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Science, Medicine, and Anthropology
Mis à jour : il y a 43 min 7 sec

In the Journals — January, Part 2, and February 2015 by Aaron Seaman

28 février 2015 - 8:19pm

This month’s post is extra large, as it gathers the tail end of last month as well. Also, if you haven’t already, check out the special issues listed at the end of this post. Enjoy!

January 2015, Part 2  (You can find Part 1 here)

Medical Anthropology

Anthropologies In and Of Evidence Making In Global Health Research and Policy (Invited Editorial)
Christopher J. Colvin

Anthropologists are not generally known for being optimistic about the state and status of their discipline’s contribution to health research, policy, and practice. Contemporary debates around the forms and effects of knowledge production in health often focus—despairingly, and with good reason—on the continuing dominance of quantitative, narrowly defined biomedical ways of knowing, the rise of the clinical trial and its broader project of evidence-based medicine (EBM), and the conflicted nexus between science and ‘Big Pharma’s’ pursuit of new pharmaceutical knowledge, technologies, and profits (Goldacre 2013; Lambert, Gordon, and Bogdan-Lovis 2006; Mykhalovskiy and Weir 2004; Petryna 2009). Despite the long-standing efforts of advocates from anthropology, sociology, history, and other disciplines to promote the importance of ‘neglected’ forms of social and behavioral research in health—research often glossed as ‘qualitative research’—the picture that most often emerges of the health arena is of a terrain that consists almost entirely of lab experiments, computer modeling, and randomized controlled trials (RCTs). In the last few years, however, I have had the opportunity to be involved in two small, but potentially revealing developments in qualitative health research that might complicate this conventional narrative in useful ways. I describe these developments next and examine what they may signify for broader questions in medical anthropology about the current processes and politics of knowledge production in global health research and policymaking.

Justice at the Margins: Witches, Poisoners, and Social Accountability in Northern Uganda
Tim Allen and Kyla Reid

Recent responses to people alleged to be ‘witches’ or ‘poisoners’ among the Madi of northern Uganda are compared with those of the 1980s. The extreme violence of past incidents is set in the context of contemporary upheavals and, in effect, encouragement from Catholic and governmental attitudes and initiatives. Mob justice has subsequently become less common. From 2006, a democratic system for dealing with suspects was introduced, whereby those receiving the highest number of votes are expelled from the neighborhood or punished in other ways. These developments are assessed with reference to trends in supporting ‘traditional’ approaches to social accountability and social healing as alternatives to more conventional measures. Caution is required. Locally acceptable hybrid systems may emerge, but when things turn nasty, it is usually the weak and vulnerable that suffer.

Breaking Silences and Upholding Confidences: Responding to HIV in the Lihir Islands, Papua New Guinea
Susan R. Hemer 

Various forms of silence are understood to characterize the response to HIV/AIDS in the Lihir Islands in Papua New Guinea. While some efforts have been made to prevent HIV and educate residents, these seem not to have been in proportion to its classification as a high-risk setting for transmission, given social factors associated with the Lihir gold mine. Confidentiality is both practiced yet critiqued in Lihir as another form of silencing that detracts from efforts to emphasize the serious nature of HIV, promote its prevention, and care for those who live with it. ‘Breaking the silence’ has come to be seen as key to preventing HIV in Lihir, yet while certain silences are acknowledged, others have escaped scrutiny.

Securitarian Healing: Roma Mobility and Health Care in Rome
Lorenzo Alunni 

Over the last decade, Roma populations in Europe have been the object of strict securitarian policies. The Rome case is particularly interesting due to the continued shift from securitarian to humanitarian discourses and actions led by local institutions. The specific health care system implemented in the legal and illegal Roma camps was one of the tools used. The ethnographic fieldwork behind this article involved following the daily activities of a mobile medical unit dedicated to Roma camps in Rome and monitoring a health care project led by a nongovernmental organization. This analysis focuses on one particular dimension of precarious forms of Roma citizenship that the health care policies have developed to address Roma issues: the international mobility dynamics relating to health issues, which drive subjects into a forced integration of multiple, incomplete, and fragmentary medical approaches.

Narrating Narcolepsy—Centering a Side Effect
Britta Lundgren

The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009–2010, and covered 60% of the population. From 2010, an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for more than 200 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath—using dark humor, cognitive tricks, and making themselves and their children’s bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work, and the potential for reflective consciousness, is discussed.

Strawberry Fields as Extreme Environments: The Ecobiopolitics of Farmworker Health
Dvera I. Saxton

Based on nearly two years of ethnographic research with farmworkers in California’s Pájaro Valley, in this article I build on Olson’s idea of “extreme environments.” By merging theories of biopolitics and political ecology, or ecobiopolitics, I explore the naturalization of chemically intensive systems of agricultural production and the health consequences they produce for farmworkers. State and industry regimes of agricultural knowledge and practice are designed to control workers and the environment in strawberry fields. They also produce devastating syndemics and chronicities of disease in farmworker bodies and communities. The relationships between health disparities and farmworkers’ lifetimes of exposure to toxic pesticides remain underexplored and poorly understood, perpetuating toxic ignorance about the relationships between pesticides and farmworker health. This enables equating worker well-being with industry well-being. Synergies between ethnographic and environmental health research are needed to challenge toxic ignorance, toxic layering, and the invisible harms they produce in agricultural communities.

Science, Technology, & Human Values

The Pharmaceutical Commons: Sharing and Exclusion in Global Health Drug Development
Javier Lezaun and Catherine M. Montgomery 

In the last decade, the organization of pharmaceutical research on neglected tropical diseases has undergone transformative change. In a context of perceived “market failure,” the development of new medicines is increasingly handled by public-private partnerships. This shift toward hybrid organizational models depends on a particular form of exchange: the sharing of proprietary assets in general and of intellectual property rights in particular. This article explores the paradoxical role of private property in this new configuration of global health research and development. Rather than a tool to block potential competitors, proprietary assets function as a lever to attract others into risky collaborative ventures; instead of demarcating public and private domains, the sharing of property rights is used to increase the porosity of that boundary. This reimagination of the value of property is connected to the peculiar timescape of global health drug development, a promissory orientation to the future that takes its clearest form in the centrality of “virtual” business models and the proliferation of strategies of deferral. Drawing on the anthropological literature on inalienable possessions, we reconsider property’s traditional exclusionary role and discuss the possibility that the new pharmaceutical “commons” proclaimed by contemporary global health partnerships might be the precursor of future enclosures.

“What Is the FDA Going to Think?”: Negotiating Values through Reflective and Strategic Category Work in Microbiome Science
Katherine W. Darling, Angie M. Boyce, Mildred K. Cho, and Pamela L. Sankar 

The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with microbiome researchers, we argue that negotiations of epistemic, social, and institutional values were inextricable from the reflective and strategic category work (i.e., the work of anticipating and strategizing around divergent sets of institutional categories) that defined and organized the microbiome as an object of study and a potential future site of biomedical intervention. Negotiating the divergence or tension between emerging scientific and regulatory classifications also activated “values levers” and opened up reflective discussions of how classifications embody values and how these values might differ across domains. These data suggest that scholars at the intersections of science and technology studies, ethics, and policy could leverage such openings to identify and intervene in the ways that ethical/regulatory and scientific/technical practices are coproduced within unfolding research.

Sociology of Health & Illness

Becoming incapacitated? Long-term sickness benefit recipients and the construction of stigma and identity narratives
Kayleigh Garthwaite 

The transition to becoming ‘incapacitated’ and receiving sickness benefits represents a significant shift in an individual’s narrative. Drawing on in-depth interviews with 25 long-term sickness benefits recipients in North-East England, this article focuses upon how individuals perceived and managed becoming ‘incapacitated’, particularly in relation to stigma and identity. The findings show that participants negotiated changes to their identity in varying ways – constructing new dimensions of self, validating their illness and pursuing aspirations. Importantly, the transition onto sickness benefits does not inevitably result in a shift to a negative identity. The term incapacity can include many realities, challenging the notion of sickness benefit recipients as being passively dependent. Instead, an active, sometimes very functional sense of self can be accompanied by a positive identity for recipients, which is especially important, in a context of the rhetoric surrounding ongoing welfare reform and sickness benefits recipients in the UK.

Potential challenges facing distributed leadership in health care: evidence from the UK National Health Service
Graeme Martin, Nic Beech, Robert MacIntosh, and Stacey Bushfield 

The discourse of leaderism in health care has been a subject of much academic and practical debate. Recently, distributed leadership (DL) has been adopted as a key strand of policy in the UK National Health Service (NHS). However, there is some confusion over the meaning of DL and uncertainty over its application to clinical and non-clinical staff. This article examines the potential for DL in the NHS by drawing on qualitative data from three co-located health-care organisations that embraced DL as part of their organisational strategy. Recent theorising positions DL as a hybrid model combining focused and dispersed leadership; however, our data raise important challenges for policymakers and senior managers who are implementing such a leadership policy. We show that there are three distinct forms of disconnect and that these pose a significant problem for DL. However, we argue that instead of these disconnects posing a significant problem for the discourse of leaderism, they enable a fantasy of leadership that draws on and supports the discourse.

Soft governance, restratification and the 2004 general medical services contract: the case of UK primary care organisations and general practice teams
Suzanne Grant, Adele Ring, Mark Gabbay, Bruce Guthrie, Gary McLean, Frances S. Mair, Graham Watt, David Heaney, and Catherine O’Donnell

In the UK National Health Service, primary care organisation (PCO) managers have traditionally relied on the soft leadership of general practitioners based on professional self-regulation rather than direct managerial control. The 2004 general medical services contract (nGMS) represented a significant break from this arrangement by introducing new performance management mechanisms for PCO managers to measure and improve general practice work. This article examines the impact of nGMS on the governance of UK general practice by PCO managers through a qualitative analysis of data from an empirical study in four UK PCOs and eight general practices, drawing on Hood’s four-part governance framework. Two hybrids emerged: (i) PCO managers emphasised a hybrid of oversight, competition (comptrol) and peer-based mutuality by granting increased support, guidance and autonomy to compliant practices; and (ii) practices emphasised a broad acceptance of increased PCO oversight of clinical work that incorporated a restratified elite of general practice clinical peers at both PCO and practice levels. Given the increased international focus on the quality, safety and efficiency in primary care, a key issue for PCOs and practices will be to achieve an effective, contextually appropriate balance between the counterposing governance mechanisms of peer-led mutuality and externally led comptrol.

Understanding health through social practices: performance and materiality in everyday life
Cecily Jane Maller 

The importance of recognising structure and agency in health research to move beyond methodological individualism is well documented. To progress incorporating social theory into health, researchers have used Giddens’ and Bourdieu’s conceptualisations of social practice to understand relationships between agency, structure and health. However, social practice theories have more to offer than has currently been capitalised upon. This article delves into contemporary theories of social practice as used in consumption and sustainability research to provide an alternative, and more contextualised means, of understanding and explaining human action in relation to health and wellbeing. Two key observations are made. Firstly, the latest formulations of social practice theory distinguish moments of practice performance from practices as persistent entities across time and space, allowing empirical application to explain practice histories and future trajectories. Secondly, they emphasise the materiality of everyday life, foregrounding things, technologies and other non-humans that cannot be ignored in a technologically dependent social world. In concluding, I argue the value of using contemporary social practice theories in health research is that they reframe the way in which health outcomes can be understood and could inform more effective interventions that move beyond attitudes, behaviour and choices.

On interviewing people with pets: reflections from qualitative research on people with long-term conditions
Sara Ryan and Sue Ziebland

There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people’s narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people’s relationships with pets, and the embedded and embodied ways in which human–nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three-way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers’ responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice.

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease (open access)
Sverre Vigeland Lerum, Kari Nyheim Solbrække, Trygve Holmøy, and Jan C. Frich 

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2–5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

Male combat veterans’ narratives of PTSD, masculinity, and health
Nick Caddick, Brett Smith, and Cassandra Phoenix 

This article uniquely examines the ways a group of male combat veterans talk about masculinity and how, following post-traumatic stress disorder (PTSD), they performed masculinities in the context of a surfing group, and what effects this had upon their health and wellbeing. Participant observations and life history interviews were conducted with a group of combat veterans who belonged to a surfing charity for veterans experiencing PTSD. Data were rigorously explored via narrative analysis. Our findings revealed the ways in which veterans enacted masculinities in accordance with the values that were cultivated during military service. These masculine performances in the surfing group had important effects both on and for the veterans’ wellbeing. Significantly, the study highlights how masculine performances can be seen alternately as a danger and as a resource for health and wellbeing in relation to PTSD. The article advances knowledge on combat veterans and mental health with critical implications for the promotion of male veterans’ mental health. These include the original suggestion that health-promoting masculine performances might be recognised and supported in PTSD treatment settings. Rather than automatically viewing masculinity as problematic, this article moves the field forward by highlighting how hegemonic masculinities can be reconstructed in positive ways which might improve veterans’ health and wellbeing.

The business of care: the moral labour of care workers (open access)
Eleanor K. Johnson

Drawing on a case study conducted in a private residential care home, this article examines the emotional labour of care workers in relation to the moral construction of care and the practical experiences of work. An examination of the company’s discursive attempts to construct, manage and demarcate its employees’ emotional labour was carried out alongside an exploration of the carers’ own interpretations of, and enrolment in, the care-giving role. The potential economic and emotional consequences of these occurrences were a key focus of the inquiry. The study found that carers, encouraged by the company, naturalised their emotional labour, and that this had contradictory consequences. On the one hand it justified the economic devaluation of the carer’s work and left her vulnerable to emotional over-involvement and client aggression. On the other, it allowed the worker to defend the moral interests of those within her care and to see when those interests were in conflict with the economic motivations of her employer.

Stopped hearts, amputated toes and NASA: contemporary legends among healthy volunteers in US phase I clinical trials
Jill A. Fisher 

The first stage of testing new pharmaceuticals in humans is referred to as a phase I clinical trial. The purpose of these studies is to test the safety of the drugs and to establish appropriate doses that can later be given to patients. Most of these studies are conducted under controlled, in-patient conditions using healthy volunteers who are paid for their participation. To explore healthy volunteers’ experiences in clinical trials, an ethnographic study was conducted at six in-patient phase I clinics in the USA. In addition to the observation of clinic activities (from informed consent procedures to dosing to blood draws), 268 semi-structured interviews were conducted, 33 with clinic staff and 235 with healthy volunteers. Drawing on this dataset, this article explores healthy volunteers’ exchange of contemporary legends about phase I clinical trials. In addition to potentially scaring the listener and communicating distrust in the medical community, these incredible stories help participants cope with perceived stigma and establish a gradient of risk of trial participation, creating potential boundaries to their participation in medical research. The article argues that contemporary legends play a productive role in society, shaping how people view themselves and others and influencing their decisions about risky activities.

Patterns and causes of health inequalities in later life: a Bourdieusian approach
Pauline McGovern and James Y. Nazroo 

This study explores the relationship between social class and health change in older people in a path analysis, using data from the English Longitudinal Study of Ageing (n = 6241) in a Bourdieusian theoretical framework. Bourdieu drew a distinction between the occupational characteristics by which people are classified and the secondary properties of class that relate to lifestyle (economic, cultural and social capitals). Our path model includes both occupational and secondary characteristics of objective social class as well as a measure of subjective social class. We investigate the effects of the predictors on change in three health outcomes (self-rated health, number of symptoms of depression and number of difficulties with the activities of daily living). The analysis adds to Bourdieusian research by showing how the effects of objective social class on health are partially mediated by perceived social status. It also adds to substantive research on the relationship between class and health by suggesting that class-related health inequalities do persist for older people, even for those who are not in paid employment. It suggests that a large amount of the effect of occupation on the health of older people is not direct but indirect; through their personal wealth and lifestyle.

Technology and Culture

A Case in Pointe: Romance and Regimentation at the New York City Ballet
Whitney E. Laemmli 

This article analyzes the ballet dancer’s pointe shoe as a technology of artistic production and bodily discipline. Drawing on oral histories, memoirs, dance journals, advertisements, and other archival materials, it demonstrates that the shoe utilized by dancers at George Balanchine’s New York City Ballet was not the quintessentially Romantic entity it is so often presumed to be. Instead, it emerged from uniquely twentieth-century systems of labor and production, and it was used to alter dancers’ bodies and professional lives in particularly modern ways. The article explores not only the substance of these changes but also the ways in which Balanchine’s artistic oeuvre was inextricably intertwined with the material technologies he employed and, more broadly, how the history of technology and the history of dance can productively inform one another. Fundamentally, this article recasts Balanchine, seeing him not as a disconnected artist but as an eager participant in the twentieth-century national romance with American technology.

Theory, Culture and Society

Social Science and Neuroscience beyond Interdisciplinarity: Experimental Entanglements
Des Fitzgerald and Felicity Callard 

This article is an account of the dynamics of interaction across the social sciences and neurosciences. Against an arid rhetoric of ‘interdisciplinarity’, it calls for a more expansive imaginary of what experiment – as practice and ethos – might offer in this space. Arguing that opportunities for collaboration between social scientists and neuroscientists need to be taken seriously, the article situates itself against existing conceptualizations of these dynamics, grouping them under three rubrics: ‘critique’, ‘ebullience’ and ‘interaction’. Despite their differences, each insists on a distinction between sociocultural and neurobiological knowledge, or does not show how a more entangled field might be realized. The article links this absence to the ‘regime of the inter-’, an ethic of interdisciplinarity that guides interaction between disciplines on the understanding of their pre-existing separateness. The argument of the paper is thus twofold: (1) that, contra the ‘regime of the inter-’, it is no longer practicable to maintain a hygienic separation between sociocultural webs and neurobiological architecture; (2) that the cognitive neuroscientific experiment, as a space of epistemological and ontological excess, offers an opportunity to researchers, from all disciplines, to explore and register this realization.

Critical Neuroscience and Socially Extended Minds
Jan Slaby and Shaun Gallagher 

The concept of a socially extended mind suggests that our cognitive processes are extended not simply by the various tools and technologies we use, but by other minds in our intersubjective interactions and, more systematically, by institutions that, like tools and technologies, enable and sometimes constitute our cognitive processes. In this article we explore the potential of this concept to facilitate the development of a critical neuroscience. We explicate the concept of cognitive institution and suggest that science itself is a good example. Science, through various practices and rules, shapes our cognitive activity so as to constitute a certain type of knowledge, packaged with relevant skills and techniques. To develop this example, we focus on neuroscience, its cultural impact, and the various institutional entanglements that complicate its influence on reframing conceptions of self and subjectivity, and on defining what questions count as important and what kind of answers will be valued.

 

February 2015

American Ethnologist

Compassion technology: Life insurance and the remaking of kinship in Swaziland’s age of HIV
Casey Golomski 

An emergent life insurance market in Swaziland is prompting some families to remake kinship as the entrustment of a generation of deceased relatives’ children. Coincident with high HIV/AIDS mortality and changing economic policies for the financial services sector, Swaziland saw an influx of foreign insurance companies in the early 2000s. Those companies offered incentives like burial coverage and cash stipends, and they compelled families’ legal adoption of children as orphans through the state, an ambiguous contrast to customary child entrustment and caregiving practices. I offer ethnographic insight on financialization in the global South and conceptualize insurance as a biopolitical, moralized “compassion technology,” which enveloped persons’ financial-legal obligations within humanitarian and global health discourses of social regeneration.

Developmental diseases—an introduction to the neurological human (in motion)
Tobias Rees 

Plasticity has conceptually guided much research on the adult human brain since the late 1990s. The emergence of this idea has catapulted the neurosciences beyond the synaptic, chemical conception of the brain, its diseases, and its humans that dominated the second half of the 20th century. I explore the figure of what I call the “neurological human” to bring such mutations of the neuroscientific order of knowledge into a sharp analytical focus.

Cultural Anthropology (open access)

Wild Goose Chase: The Displacement of Influenza Research in the Fields of Poyang Lake, China
Lyle Fearnley

This article follows transnational avian influenza scientists as they move their experimental systems and research objects into what they refer to as the “epicenter” of flu pandemics, southern China. Based on the hypothesis that contact between wild and domestic bird species could produce new pandemic flu viruses, scientists set up a research program into the wild–domestic interface at China’s Poyang Lake. As influenza comes to be understood in terms of multispecies relations and ecologies in addition to the virus proper, the scientific knowledge of influenza is increasingly dependent on research conducted at particular sites, such as Poyang Lake. What does this movement of influenza research from laboratory to field mean for anthropological concepts of scientific knowledge? A widely shared premise among anthropologists is that scientific knowledge is made in experimental practice, but this practice turn in science studies draws largely from fieldwork inside laboratories. In this article, drawing on fieldwork with both influenza scientists and poultry breeders, I show how scientific research objects can be displaced by the practices of poultry breeders rather than by experimental practice itself. For these poultry breeders, refusing to respect the distinction of wild and domestic, were breeding wild birds.

The Thing in a Jar: Mushrooms and Ontological Speculations in Post-Yugoslavia
Larisa Jasarevic 

This essay thinks with things that ferment medical remedies in recycled jars and issue exuberant surpluses across kitchens in Bosnia and ex-Yugoslavia. While the jars are handled under the preferred sign of the mushroom and brewing recipes include instructions on non-commercial exchange, the nature of the things in the jar remains vague. Brewing in the kitchens and circling as gifts are buoyant life-forms that alter their hosts, inspire zones of unexpected connection and relational innovation, and direct home trials and ontological speculations around some burning, practical questions: How best to relate to the mushroom? With whom should one relate via the mushroom, and how? The texts explores the fungal materialities and pluripotencies with an ear for popular experiments, teasing out the banal as well as charmed interplay between imagination and association, knowledge and experience. I join the conversation on new materialisms and step into spaces of being and relating across formal differences, but do so in the idiom of kitchen fermentations rather than multispecies or multiethnic relations to attend to the kinds of things that act and inspire wonder outside ready-made rubrics and analytics.

From Anthropologist to Actant (and back to Anthropology): Position, Impasse, and Observation in Sociotechnical Collaboration
Anthony Stavrianakis 

Anthropologists are increasingly invited to participate in collaborations with natural scientists, among other experts, in their capacity as anthropologists. Such invitations give pause for thought about the character of the positions and practices that an anthropologist can occupy and perform. This article draws on participant observation in the Socio-Technical Integration Research (STIR) project, an endeavor based at Arizona State University, which aimed to modulate scientific practice. I observe and analyze the disquiet of participating social scientists by questioning the epistemic, ethical, and affective parameters of such modulation, in which social scientists were ultimately positioned and framed as actants—and not engaged as thinking subjects—for the reflexivity of natural scientists toward natural scientific work. I describe how such a method for increasing and extending the scope of scientific reflexivity was ultimately bound to the dominant instrumental norms and values of contemporary technoscience. The article suggests that reflection on problems of collaboration through questions of position and mode of engagement opens the scope and parameters for contemporary anthropological inquiry into anthropological collaborations within domains of science and technology.

 

Health and Place

The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study
Gemma Heath, Sheila Greenfield, and Sabi Redwood 

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld.

Re-thinking children׳s agency in extreme hardship: Zimbabwean children׳s draw-and-write about their HIV-affected peers
Catherine Campbell, Louise Andersen, Alice Mutsikiwa, Claudius Madanhire, Morten Skovdal, Constance Nyamukapa, and Simon Gregson 

We compare two analyses of the same ‘draw-and-write’ exercises in which 128 Zimbabwean children represented their HIV-affected peers. The first, informed by the ‘New Social Studies of Childhood’, easily identified examples of independent reflection and action by children. The second, informed by Sen׳s understandings of agency, drew attention to the negative consequences of many of the choices available to children, and the contextual limits on outcomes children themselves would value: the support of caring adults, adequate food, and opportunities to advance their health and safety. Conceptualisations of agency need to take greater account of children׳s own accounts of outcomes they value, rather than identifying agency in any form of independent reflection and action per se.

Conceptualizations of pluralistic medical fields: exploring the therapeutic landscapes of Nepal
Rikke Stamp Thorsen 

Using the concept of ‘therapeutic landscapes’ this study explores how people in Nepal conceptualize their health care opportunities and how health care seeking practices are interpreted and experienced differently among people in their everyday contexts. Relational therapeutic landscapes were experienced through notions related to time and place as treatments were positioned along spectrums ranging from home to city and past to present. Conceptualizations of treatments were influenced by accessibility, lack of knowledge and uncertainties related to getting diagnosis as well as structural constraints beyond the health care system.

“It is about being outside”: Canadian youth’s perspectives of good health and the environment
Roberta L. Woodgate and Olga Skarlato 

Drawing on qualitative data generated from an ethnographic study exploring Canadian youth’s understanding of health, this paper examines youth’s perspectives of the relationships between health and environment. Seventy-one youth (12 to 19 years of age) took part in individual and focus group interviews, as well as in photovoice interviews. Although initial discourse about health mainly focused on healthy eating and exercise, youth were more enthused and able to share their thoughts and feelings about the relationships between health and environment during the photovoice interviews. For these youth, good health was defined and visualized as “being outside” in a safe, clean, green, and livable space. Youth talked about conditions contributing to healthy environments and how healthy environments contributed to a strong sense of place. Overall, the conversations about the environment evoked many feelings in the youth. Results are discussed in the context of current research and in relation to youth, but also more broadly in relation to research on health and environment.

Putting the party down on paper: A novel method for mapping youth drug use in private settings
Signe Ravn and Cameron Duff 

This article proposes a novel method for generating context-rich knowledge about ‘hard-to-access’ places. We ground our discussion in a recent qualitative study of social settings of youth drug use in Denmark. The study confirmed that private house parties are common sites of youth drug use, although these parties presented limited opportunities for fieldwork. In response, a ‘map-task’ was introduced to the study to complement fieldwork and interviews. We assess the most significant methodological and epistemological features of this map-task, and explore how it may to used to conduct observations ‘from a distance’ in hard-to-access places. Further, we argue that the map-task has a number of analytical and logistical advantages for scholars interested in the health and social aspects of ‘hidden’ phenomena, such as youth drug use.

Dreaming of toilets: Using photovoice to explore knowledge, attitudes and practices around water–health linkages in rural Kenya
Elijah Bisung, Susan J. Elliott, Bernard Abudho, Corinne J. Schuster-Wallace, and Diana M. Karanja 

As part of a knowledge, attitudes, practices and empowerment (KAPE) project implemented by the United Nations University Institute for Water, Environment and Health (UNU-INWEH) in the Lake Victoria Basin, this paper reports findings from a photovoice study with women in Usoma, a lakeshore community in Western Kenya. Drawing on ecosocial and political ecology theory, findings reveal that access to water, perceptions and practices were shaped by ecological and broader structural factors. Further, collective actions to improve access were constrained by institutional and economic structures, thus (re)enforcing inequalities.

 

Philosophy, Ethics, and Humanities in Medicine (open access)

Luria revisited: cognitive research in schizophrenia, past implications and future challenges
Yuliya Zaytseva, Raymond CK Chan, Ernst Pöppel, and Andreas Heinz 

Contemporary psychiatry is becoming more biologically oriented in the attempt to elicit a biological rationale of mental diseases. Although mental disorders comprise mostly functional abnormalities, there is a substantial overlap between neurology and psychiatry in addressing cognitive disturbances. In schizophrenia, the presence of cognitive impairment prior to the onset of psychosis and early after its manifestation suggests that some neurocognitive abnormalities precede the onset of psychosis and may represent a trait marker. These cognitive alterations may arise from functional disconnectivity, as no significant brain damage has been found. In this review we aim to revise A.R. Luria’s systematic approach used in the neuropsychological evaluation of cognitive functions, which was primarily applied in patients with neurological disorders and in the cognitive evaluation in schizophrenia and other related disorders. As proposed by Luria, cognitive processes, associated with higher cortical functions, may represent functional systems that are not localized in narrow, circumscribed areas of the brain, but occur among groups of concertedly working brain structures, each of which makes its own particular contribution to the organization of the functional system. Current developments in neuroscience provide evidence of functional connectivity in the brain. Therefore, Luria’s approach may serve as a frame of reference for the analysis and interpretation of cognitive functions in general and their abnormalities in schizophrenia in particular. Having said that, modern technology, as well as experimental evidence, may help us to understand the brain better and lead us towards creating a new classification of cognitive functions. In schizophrenia research, multidisciplinary approaches must be utilized to address specific cognitive alterations. The relationships among the components of cognitive functions derived from the functional connectivity of the brain may provide an insight into cognitive machinery.

Erasing traumatic memories: when context and social interests can outweigh personal autonomy
Andrea Lavazza 

Neuroscientific research on the removal of unpleasant and traumatic memories is still at a very early stage, but is making rapid progress and has stirred a significant philosophical and neuroethical debate. Even if memory is considered to be a fundamental element of personal identity, in the context of memory-erasing the autonomy of decision-making seems prevailing. However, there seem to be situations where the overall context in which people might choose to intervene on their memories would lead to view those actions as counterproductive. In this article, I outline situations where the so-called composition effects can produce negative results for everyone involved, even if the individual decisions are not as such negative. In such situations medical treatments that usually everyone should be free to take, following the principle of autonomy, can make it so that the personal autonomy of the individuals in the group considered is damaged or even destroyed. In these specific cases, in which what is called the “conformity to context” prevails, the moral admissibility of procedures of memory-erasing is called into question and the principle of personal autonomy turns out to be subordinate to social interests benefitting every member of the group.

Social Science & Medicine

As always, Social Science & Medicine has more articles than we can cover here. However, three recent items of note are special issues or sections of issues in January and February:

Special issue section Transnational Healthcare: Cross-Border Perspectives; Edited by David Bell, Ruth Holliday, Meghann Ormond and Tomas Mainil

Special Issue: Social Networks, Health and Mental Health; Edited by Alexander C. Tsai and Andrew V. Papachristos

Special Issue: Educational Attainment and Adult Health: Contextualizing Causality; Edited by Jennifer Karas Montez and Esther M. Friedman

 

Social Studies of Science

Politicizing science: Conceptions of politics in science and technology studies
Mark B Brown

This essay examines five ideal–typical conceptions of politics in science and technology studies. Rather than evaluating these conceptions with reference to a single standard, the essay shows how different conceptions of politics serve distinct purposes: normative critique, two approaches to empirical description, and two views of democracy. I discuss each conception of politics with respect to how well it fulfills its apparent primary purpose, as well as its implications for the purpose of studying a key issue in contemporary democratic societies: the politicization of science. In this respect, the essay goes beyond classifying different conceptions of politics and also recommends the fifth conception as especially conducive to understanding and shaping the processes whereby science becomes a site or object of political activity. The essay also employs several analytical distinctions to help clarify the differences among conceptions of politics: between science as ‘political’ (adjective) and science as a site of ‘politics’ (noun), between spatial-conceptions and activity-conceptions of politics, between latent conflicts and actual conflicts, and between politics and power. The essay also makes the methodological argument that the politics of science and technology is best studied with concepts and methods that facilitate dialogue between actors and analysts. The main goal, however, is not to defend a particular view of politics, but to promote conversation on the conceptions of politics that animate research in social studies of science and technology.

Sustaining cyborgs: Sensing and tuning agencies of pacemakers and implantable cardioverter defibrillators
Nelly Oudshoorn

Recently there has been a renewed interest in cyborgs, and particularly in new and emerging fusions of humans and technologies related to the development of human enhancement technologies. These studies reflect a trend to follow new and emerging technologies. In this article, I argue that it is important to study ‘older’ and more familiar cyborgs as well. Studying ‘the old’ is important because it enables us to recognize hybrids’ embodied experiences. This article addresses two of these older hybrids: pacemakers and implantable cardioverter defibrillators inserted in the bodies of people suffering from heart-rhythm disturbances. My concern with hybrid bodies is that internal devices seem to present a complex and neglected case if we wish to understand human agency. Their ‘users’ seem to be passive because they cannot exert any direct control over the working of their devices. Technologies inside bodies challenge a longstanding tradition of theorizing human–technology relations only in terms of technologies external to the body. Cyborg theory is problematic as well because most studies tend to conceptualize the cyborg merely as a discursive entity and silence the voices of people living as cyborgs. Inspired by feminist research that foregrounds the materiality of the lived and intimate relations between bodies and technologies, I argue that creating these intimate relations requires patients’ active involvement in sustaining their hybrid bodies. Based on observations of these monitoring practices in a Dutch hospital and interviews with patients and technicians, the article shows that heart cyborgs are far from passive. On the contrary, their unique experience in sensing the entangled agencies of technologies and their own heart plays a crucial role in sustaining their hybrid bodies.

Trust in standards: Transitioning clinical exome sequencing from bench to bedside
Stefan Timmermans 

Clinical exome sequencing is a genetic technology making the transition from a laboratory research tool to a routine clinical technique used to diagnose patients. Standards help make this transition by offering authoritative shortcuts for time-intensive tasks, but each shortcut means that something is lost during abstraction. In clinical exome sequencing, reliance on standards may obscure the match between a patient’s phenotype and genotype. Based on three years of observations, I show how a clinical exome sequencing team decides when to trust standards and when to develop workarounds. I argue that the match between phenotype and genotype is circumscribed by the team’s reliance on specific standards and that trusting in standards means trusting in experts’ appropriate use of standards, generating a workflow of reflexive standardization.

 

Special Issues Previously Covered on Somatosphere

Medical Anthropology: Ethics, Epistemology, and Engagement: Encountering Values in Medical Anthropology

Culture, Medicine, and Psychiatry: The Practice of Constraint in Psychiatry: Emergent Forms of Care and Control

Medicine Anthropology Theory (MAT)Inaugural Issue

Web Roundup: Transportation Technologies and Futures by Lily Shapiro

28 février 2015 - 6:35pm

This month’s Web Roundup is about transportation—technologies, politics, and histories. Much of it has to do with driverless/autonomous cars, which have been in the news a lot this month.

Time has a piece on the technical details of how driverless cars work, and what hurdles need to be overcome before they do. The Atlantic’s CityLab has an interesting article on the project of “humanizing driverless cars,” which aims to address the fact that autonomous cars may have the technical ability to drive in such a way that makes human passengers uncomfortable. For instance, they did a test with a car passing through a narrow gate, something most drivers would slow considerably to do, but the autonomous car, judging the distance and clearance, went through at around 30 M.P.H., which rather terrified the human passengers. How do you make a driverless car that still drives like a human?

Daimler unveiled a demonstration of a driverless truck in Germany, which it hopes to be able to mass-produce by 2025, with the goal of reducing carbon emissions and road accidents.

Is your connected car spying on you? From the BBC. The BBC also has a longish review article on various forms of transportation technology, with varying degrees of futuristic-ness (jet packs to trains to autonomous cars).

In, To Make Roads Safe, Make Them Feel Dangerous, The Atlantic reviews research relating to what kinds of signs, cues, and road infrastructure makes people more or less cautious drivers, along with efforts in the U.S. and Europe to make roads “feel” more dangerous—narrower lanes, fewer traffic lights—which correlate with more cautious driving.

PBS Newshour interviewed Dr. Christopher Mason, a geneticist at Weill Cornell Medical College, who, along with his team collected swabs from the New York City subway and tested them for bacteria, in an effort to create, as Dr. Mason says, “the first city-scale genetic profile ever.” You can see the PathoMap here.

India has plans to revamp its railway system, which carries 13 million passengers daily, to the tune of £88 billion (USD 135 billion, INR 8.5 trillion). This announcement came just days before Prime Minister Narendra Modi is set to release his first, highly anticipated budget; said Modi: “The Indian railways is not only for going from one place to another, but it is a powerful tool for speeding up India’s economy.”

Spain’s Directorate General of Traffic has announced plans to institute a breathalyzer test for pedestrians, among other laws governing “dangerous walking” (though it remains unclear if the laws will be successfully passed). This article from The Guardian reviews the potentials, and potential perils of such laws, and details briefly the history of the invention of jaywalking.

Slate has a piece on discrimination and segregation (both historical and contemporary) in the US transportation system and policy.

Check out the project Back of the Bus: Mass Transit, Race, and Inequality, a radio documentary about racism, discrimination, and history in US transportation policy. You can also follow them on Twitter @TransportNation.

And finally, The Washington Post has a lovely long article called The myth of the American love affair with cars in which the writer traces how, when, why, and for whom cars became so ubiquitous in American cities, and wonders about our future—as companies like Google, Ford, Uber, Sony, and (now, reportedly) Apple race each other to come out with driverless cars safe for the road, are we losing the opportunity to consider whether that is the direction we want our transportation technology to move in? What kinds of city infrastructure will need to be built for these cars, at the expense of what kinds of other transportation futures?

 

In unrelated but interesting news…

Research at a Japanese bank showed that workers were more productive in inclement weather.

Alaya Dawn Johnson wrote a piece for NPR on black science fiction writers and writings, on the history and present of discrimination in the genre, and on slow change as more and more science fiction writers of color gain recognition for their work.

The Attorney General in New York ordered that major retailers Walmart, Walgreens, Target, and GNC remove herbal supplements from their shelves after testing revealed that four out of five supplements tested “did not contain any of the herbs listed on their labels.” Building on that, The Atlantic has an article on the history of nutritional supplements in America, including an interview with Catherine Price, author of Vitamania: Our Obsessive Quest for Nutritional Perfection, out this month from Penguin Press.

Bio-Ethnography: A Collaborative, Methodological Experiment in Mexico City by Elizabeth F.S. Roberts

26 février 2015 - 7:03pm

In 1993, a team of U.S.-based environmental health researchers partnered with public health officials in Mexico to form ELEMENT (Early Life Exposure in Mexico to Environmental Toxicants). The project aimed to study the effects of chemical exposures, particularly lead, on fetal and childhood growth and neurological development in what the United Nation then designated as the most polluted city on earth. Since then, ELEMENT project staff have collected samples of blood, urine, hair, toenails, breast milk, and teeth for ongoing molecular analysis from nearly 2000 participants, mostly working-class mother and child pairs recruited through Instituto Mexicano del Seguro Social (Seguro Social) clinics in Mexico City.

While pollution in Mexico City has lessened in recent decades through banning lead in gasoline and certain kinds of catalytic converters in cars, obesity rates have risen dramatically, resulting in Mexico being named the fattest industrial nation in 2013. The rise in obesity and diabetes has put increased pressure on Seguro Social. The system is notorious for its long waits, impersonal care, and lack of services. This complex set of circumstances creates relevant project conditions and a willing and compliant subject population for ELEMENT, as participants, through the project, receive kinds of personal attention unavailable through Seguro Social. Recently the project has expanded to collect data on additional toxins (e.g., bisphenol A, mercury, and fluoride) and new health concerns (e.g., premature sexual maturation and obesity) (Afeiche, et al. 2011).

Since the fall of 2012, I have been observing ELEMENT researchers at the University of Michigan in their laboratories and staff meetings, and in March 2013, I began conducting observations of interaction between project staff and project participants in Mexico City. Currently, I am engaged in a year-long ethnographic study of six ELEMENT participant families living in two geographically distinct, working-class neighborhoods, focusing on household and neighborhood environments and histories relevant to the production of bodily states.   Following this study, I will collaborate with ELEMENT researchers to combine biological and ethnographic data to produce more complex accounts of the links between ill health and life circumstances. In both these project phases, I am also investigating the scientific process itself: how participants’ lives are shaped by their involvement in ELEMENT research and how researchers make “universal” knowledge gleaned from monitoring specific participants’ bodies located in particular sites.

ELEMENT researchers have made several key “universalizable” findings about chemical exposures. One of ELEMENT’s early findings—that lead exposure has the greatest effect on the developing fetus in the first trimester of pregnancy—has influenced environmental and public health policy around the world. Like most molecular epidemiology studies, ELEMENT’s approach tends to situate key mechanisms for health and disease inside individual bodies rather than within specific historical and economic processes. Thus, lead levels measured in the blood of people in Mexico City in a particular neighborhood are assumed to mean the same as numerically identical levels measured in rural China. My project seeks to complicate this framework, drawing on work in both the biological and the social sciences that investigates the complex looping effects that organisms and environments have on each other (Hacking 1995). This scholarship, especially Margaret Lock’s framework of “local biologies,” challenges the assumption that biological processes are universal, that is, unaffected by circumstance or history (Lock and Nguyen 2010).

Research directions at the ELEMENT project support this looping approach. ELEMENT scientists have begun to employ epigenetic analysis in their examination of the health effects of chemical interactions in specific environments in Mexico City. Anthropology and STS have much to offer epigenetic researchers however, who tend to narrowly define what they call “social determinants” and continue to situate key disease-transmission mechanisms exclusively inside individual bodies rather than within larger histories (Lock 2013).  Already, in the United States, epigenetics seems poised to create new means to blame mothers, especially poor mothers, for the development of their children.

 

A Bio-Ethnographic Approach

Through my collaboration with ELEMENT scientists, I am attempting to develop something I call a bio-ethnographic approach, which integrates biological and ethnographic data about the larger histories and life circumstances that shape health. A bio-ethnographic approach might sound similar to what American biological anthropologists have formulated in recent decades as a “bio-cultural synthesis,” which explores the role of culture in shaping human biology and behavior, but there are important differences (Beall 2006; Hadley, et al. 2010). By maintaining culture as distinct from biology, bio-cultural synthesis remains asymmetrical. It leaves unexamined the historical and economic conditions that continuously shape biological processes and scientific study itself. By proposing a bio-ethnographic account, I am not simply adding culture to biology in order to arrive at a better understanding of human biological adaptation, but instead combining two different kinds of methodologies—ethnographic observation and biological sampling—in a synthetic, symmetrical analysis that understands environment-body interactions as always relational and constructed phenomena.

Developing a bio-ethnographic approach in a Latin American site also demonstrates how current North American biological models of the entanglement of environment and organism have some similarities to the long-standing Latin American emphasis on the reciprocal malleability of bodies and environments, often characterized by North American scholars as Lamarckian (Cadena 2000; Stepan 1991). Bringing this Latin American emphasis on malleability into critical conversation with STS literatures dislodges prevalent assumptions about the originality of current constructionist STS models of bodily plasticity and enables a close examination of the ways ELEMENT participants themselves model entanglements of ill health and life conditions.

I am also positioning bio-ethnography as a means to counter the resurgence of the “culture of poverty”. The concept arose in 1960s anthropology as a means to avoid deterministic racialized, biological explanations for ongoing poverty. Ultimately, though, it produced another form of determinism, attributing lack of economic advancement to the “cultural mentalities” of the poor. A key early text used, or misused, in the popularization of this concept was Oscar Lewis’s Five Families: Mexican Case Studies in the Culture of Poverty (Lewis 1975), which described one day in the life of five Mexican families in the 1950s, four of them in Mexico City. The uptake of this ethnographic account of poverty is instructive today, as some researchers in public policy, sociology, and epigenetics are newly attracted to the “culture of poverty” concept, remaining mostly uncritical of how the culture concept is once again separated from the material conditions and forms of dominance that produce inequality (Bourgois 2001; Small, et al. 2010).

In recent decades, anthropologists and sociologists have produced nuanced structural accounts of the conditions that perpetuate inequality, without rooting inequality in either the bodies or the mentalities of “the poor” (Bourgois 1995; Edin and Lein 1997; Katz 2013; Mullings and Wali 2001). Nonetheless, in their parsing of inequality, these studies leave physiological processes unexamined. This lacuna points to the need for the combination of biological and ethnographic findings—or bio-ethnographic research—to provide symmetrical accounts of life circumstances like poverty without deploying biology or culture as their locus.

 

Complex Conditioning Entanglements

When I first began to develop this project I imagined exposure as a crucial conceptual term for bio-ethnography. In the biological sciences, the term exposure tends to have a specific, and negative meaning, referring to contact with harmful phenomena, such as exposure to lead. Some social science research on environmental health science has adopted the concept of exposure as a means to bring together the study of health and of the environment, two realms that have long been examined separately (Brown, et al. 2011; Mitman, et al. 2004; Shostak 2013). However, in this context, exposure is somewhat taken for granted as an agreed-upon technical term transparently describing events that happen to bodies in environments, without an adequate history of the term.   As I am engaged in documenting how ELEMENT scientists, study participants, and, indeed, I myself deploy exposure, I have started to rethink its usefulness for this project. My idea had been to critically expand the concept, by examining exposure as a set of processes that include historical and political-economic dimensions. Making diverse processes equivalent however runs the danger of an “ontological flattening” (Landecker and Panofsky 2013, 341), which accepts and expands the standard model of exposure science where discrete bodies are exposed to foreign external substances. And in fact, this assumption is now undergoing profound change in many of the life sciences themselves, which posit complex conditioning entanglements that co-construct organisms and environment (Barker 1990; Bateson, et al. 2004; Jirtle and Skinner 2007; Suter, et al. 2010).   I wonder then, if exposure might be replaced by a term that signifies ongoing, complex, conditioning entanglements.

Three examples from my research in Mexico City demonstrate how a bio-ethnographic approach, including dynamics like kinship, history, gender, land politics, material culture, and class, might combine with biological data collected by ELEMENT to create a fuller account of the complex, conditioning entanglements that produce bodily states.

1) ELEMENT mothers have described to me how ELEMENT staff diagnosed their children with conditions, like ADHD, that would never have been diagnosed or treated through the Seguro Social system. For participants, who are mostly poor and working-class, being involved in ELEMENT provides forms of attention they do not receive through Seguro Social, such as being referred for specialized diagnostic tests and being chauffeured to and from ELEMENT appointments in a private car. Thus, this study population has a specific biology created in part by their participation in the study itself. Emergent models of organism-environment interaction suggest that these factors might in turn shape the data collected by ELEMENT.

2) While ELEMENT have focused on the detrimental effects of lead on fetuses and young children, some families continue to use lead-glazed ceramic dishes (trastos de barro) that were handed down and sometimes made by their grandmothers before they migrated from the countryside. Family members describe how these dishes are essential, at least on religious holidays, for honoring their grandmothers and as reminders of a different kind of life from their own in urban neighborhoods. Furthermore, they assert, along with many others in Mexico, that food cooked in leaded dishes tastes different, literally sweeter.  The use of these dishes could be seen as part of a larger rejection of the North American imperialism perceived in recent public health campaigns to discourage the use of leaded dishes. An example of this wider response is the rise of restaurants that specialize in cooking and serving food on leaded ceramic dishes. Their advertisements claim that leaded dishes make the food taste better and connect customers to a healthier, rural past.

3) Since this last fall I have been living and working in an extremely dense, hilly and geographically distinct working class neighborhood, I am calling “Moctezuma”, with one of the worst reputations in Mexico City. Along with spending time with three ELEMENT participant families, my co-researcher, Vanessa Cravioto, and I are also investigating Moctezuma’s specific history and environment.   One of the most striking aspects of our work so far has been the contrast between the external designation of Moctezuma as dangerous and our lived experience there. Moctezuma is often perceived as dysfunctional, unpoliced, over-crowded, filled with violence and drug use.   We however, have experienced it as a safe and unified neighborhood where people marginalized elsewhere, like drug users and people with disabilities, are integrated into daily life through their imbrication in families who have all known each other for sixty years.

It may be that the particular history and geography of Moctezuma has produced a kind of dense social safety net that needs to be accounted for in “health” analysis. Moctezuma is primarily made up of large, extended, stable households made possible through 1970’s land-titling programs. Additionally, Moctezuma is geographically bound, by a sewage-filled dam, recycling centers, cement factories, and a freeway. Although these boundaries could be understood as “exposures” that negatively affect health (which they undoubtedly do), they also contribute to a sense of neighborhood distinction making for an intensely relational environment where “knowing” each other provides intensive solidarity. Residential stability and geographical distinctiveness might be key to the complex conditioning entanglements that shape everyday life and health in Moctezuma.

While our ethnographic methods during this phase of data collection are standard (daily observation, life history interviews, participation in neighborhood events, and archival research), it is unknown what exactly our bio-ethnographic collaboration with ELEMENT researchers in the next phase of the project will look like. What methods and frameworks will allow us to combine biological data with ethnographic materials without privileging the biological data as more “real” than the ethnographic data? What might replacing an exposure model with a complex conditioning entanglement model, which takes into account factors such as household gendered economies, geography and kinship, contribute to understanding how, for instance, how diabetes is triggered in ELEMENT participants or how lead might affect various family members differently? And, by putting biological samples in conversation with participant’s life trajectories and environments, what might we learn that would not be possible through either ethnographic or environmental health methods alone? Your thoughts are welcome.

 

Elizabeth F.S. Roberts is an ethnographer of science, medicine and technology who teaches anthropology at the University of Michigan. Her comparative research on environmental health, epigenetics, assisted reproduction, reproductive governance and nature in Latin America and the United States, traces how bio-scientific practice shapes bodies and relatedness. She is the author of God’s Laboratory: Assisted Reproduction in the Andes (University of California Press, 2012).

 


References Cited

Afeiche, Myriam, Karen E. Peterson, Brisa N. Sanchez, David Cantonwine, Hector Lamadria-Figueroa, Lourdes Schnass, Adrienne Ettinger, Maurico Hernandez-Avila, Howard Hu, and Martha M. Tellez-Rojo 2011 Prenatal Lead Exposure and Weight of 0- to 5-Year old Children in Mexico City. Environmental Health Perspectives 119(10):1436-1441.

Barker, Charles 1990 The fetal and infant origins of adult disease. British Medical Journal 301(17):1111.

Bateson, Patrick, David Barker, Timothy Clutton-Brock, Debal Deb, BrunoD’Udine, Robert A. Foley, Keith Godfrey Peter Gluckman, Tom Kirkwood, Maria Marazon Lahr, John McNamara, Neil B. Metcalfe, Patricia Monaghan, Hamish G. Spencer, and Sonia E. Sultan 2004 Developmental plasticity and human health. Nature 430:419-421.

Beall, C. M. 2006 Andean, Tibet, and Ethiopian Patterns of Adaptation to High-Altitude Hypoxia. Journal of Integrative and Comparative Biology 46(1):18-24.

Bourgois, Philippe I. 1995 In search of respect : selling crack in El Barrio. Cambridge, New York: Cambridge University Press.

Bourgois, Phillipe 2001 Culture of Poverty. In International Encyclopedia of the Social & Behavioral Sciences. Waveland Press.: Waveland Press.

Brown, Phil, Rachel Morello-Frosch, and Stephen Zavetoski 2011 Contested Illnesses: Citizens, Scientists and Health Movements: University of California Press, CA.

Cadena, Marisol de la 2000 Indigenous Mestizos : the politics of race and culture in Cuzco, Peru, 1919-1991. Durham, NC: Duke University Press.

Edin, Kathryn, and Laura Lein 1997 Making ends meet : how single mothers survive welfare and low-wage work. New York: Russell Sage Foundation.

Hacking, Ian 1995 Rewriting the Soul: Multiple Personality and the Science of Memory. Princeton, NJ: Princeton University Press.

Hadley, C., A. Brewis, and I Pike 2010 Does Less Autonomy Erode Women’s Health? Yes. No. Maybe. American Journal of Human Biology 22(1):103-110.

Jirtle, Randy L., and Michael K. Skinner 2007 Environmental epigenomics and disease susceptibilty. Nature Reviews 8:253- 262.

Katz, Michael B. 2013 The undeserving poor : America’s enduring confrontation with poverty. Oxford, UK: Oxford University Press.

Landecker, Hannah, and Aaron Panofsky 2013 From Social Structure to Gene Regulation, and Back: A Critical Introduction to Environmental Epigenetics for Sociology. Annual Review of Sociology 39:333-57.

Lewis, Oscar 1975 Five families : Mexican case studies in the culture of poverty. New York: Basic Books.

Lock, Margaret 2013 The Epigenome and Nature/Nurture Reunification: A Challenge for Anthropology Medical Anthropology 32:291-308.

Lock, Margaret, and Vinh-Kim Nguyen 2010 An Anthropology of Biomedicine. Oxford: Wiley-Blackwell.

Mitman, Gregg, Michelle Murphy, and Christopher C. Sellers 2004 Landscapes of exposure : knowledge and illness in modern environments. Chicago: University of Chicago Press.

Mullings, Leith, and Alaka Wali 2001 Stress and resilience : the social context of reproduction in Central Harlem. New York: Kluwer Academic/Plenum Publishers.

Shostak, Sara 2013 Exposed science : genes, the environment, and the politics of population health. Berkeley, CA: University of California Press.

Small, Mario Luis, David J. Harding, and Michèle Lamont 2010 Reconsidering Culture and Poverty – Special Issue. The Annals of the American Academy of Political and Social Science 629(1).

Stepan, Nancy 1991 The Hour of Eugenics: Race, Gender, and Nation in Latin America. Ithaca, NY: Cornell University Press.

Suter, Melissa, Adi Abramovici, Lori Showalter, Min Hu, Cynthia Do Shope, Micheal Varner, and Kjersti Aagaard-Tillery 2010 In utero tobacco exposure epigenetically modifies placental CYP1A1 expression. Metabolism: Clinical and Experimental 59:1481-1490.

 

Michal Shapira’s The War Inside by Andrew Lea

20 février 2015 - 9:30am

The War Inside: Psychoanalysis, Total War, and the Making of the Democratic Self in Postwar Britain

by Michal Shapira

2013, Cambridge University Press, 284 pages

 

Between September 1940 and May 1941, the Luftwaffe dropped nearly 50,000 tons of bombs over Britain. In 1940, at the height of these air raids during World War II, the celebrated British poet Edith Sitwell wrote “Still Falls the Rain.” The poem, among Sitwell’s most widely recognized, carries the sorrow of the historical moment from which it emerged:

Still falls the Rain -

Dark as the world of man, black as our loss -

Blind as the nineteen hundred and forty nails

Upon the cross. (Sitwell 1985)

Sitwell’s poem stands as a testament to nothing if not the simple fact that the London Blitz drove the creative energies of innumerable poets, artists, and thinkers, from T.S. Elliot to Benjamin Britten. As Michal Shapira compellingly demonstrates in her new book The War Inside, the specter of conflict on British soil also had profound implications for the practical application and theoretical formulation of psychoanalysis as a burgeoning medical and philosophical enterprise.

At the broadest level, The War Inside illustrates “how ideas of childhood, family, and democratic selfhood changed in reaction to the Blitz, the evacuation process, and the experience of total war in Britain” (17). Psychoanalysis, Shapira argues, at once shaped and was shaped by the war and the emergence of the welfare state in Britain. Shapira traces this coevolution of psychoanalysis and ideas about childhood, anxiety, and democratic selfhood as it unravelled in a number of different contexts. Of particular interest to Shapira is the psychoanalytic proposition that the external realities of war were also experienced internally and psychologically by British citizens—a phenomenon Shapira calls “the war inside.”

In Chapter 1, Shapira demonstrates how a new social concept of anxiety related to warfare—one that encompassed the civilian population as much as it did military personnel—arose during World War II. Focusing on the British Psycho-Analytical Society (BPAS) and the work of Anna Freud, Chapter 2 links this reconceptualization of anxiety to the work of child psychoanalysts: because the war fractured families and separated many children from their parents, analysts reasoned that the surest avenue to a functioning democratic society involved the restoration of familial relationships and the quelling of internal anxieties. Where Chapter 2 outlines the clinical work of Anna Freud, Chapter 3 examines the psychoanalytic contributions of Melanie Klein, exploring the extent to which Klein placed further emphasis on the inner psychological conflicts precipitated by total war. Chapter 4 describes how psychoanalytic expertise was disseminated at the broad level of radio broadcasting rather than the narrow level of the individual clinic. While the bulk of Shapira’s book concentrates on the everyday problems of normal families and children, Chapters 5 and 6 instead focus on the Institute for the Scientific Treatment of Delinquency (ISTD), a dynamically-inclined organization that made important contributions to the field of criminology, in order to track the rise of the “therapeutic state” (196). Finally, in Chapter 7, Shapira uses John Bowlby’s pioneering work on the mother-child relationship at the Separation Research Unit as a window into the influence of psychoanalysis on social policy and hospital regulations.

As much as The War Inside deals nominally with “psychoanalysis,” Shapira is too careful a scholar to treat psychoanalysis as a unified and monolithic enterprise. Indeed, among the book’s most significant strengths is the way in which it not only isolates the various strains of psychoanalytic thought and practice, but also identifies the various points of disjuncture and continuity among these different strains. Shapira, for instance, brings nuance to a longstanding conversation in the history of psychoanalysis surrounding Anna Freud and Melanie Klein’s competing visions for psychoanalysis. Without trivializing the critical differences between Freud and Klein, Shapira astutely sheds light on the spaces of overlap and dialogue between these two schools of psychoanalytic thought: “A historical reading of these two women’s archival and published war work,” Shapira writes, “reveals that they were more similar than they first appeared. They both emphasized anxiety, aggression, and the fragility of selfhood, and the social as well as personal need to acknowledge and work through such emotions” (89).

Beyond clarifications of this nature, the book’s most substantial contributions hang loosely together into two categories: the book offers insights into both the conceptual reformulations of psychoanalysis during and after World War II and, more interestingly, the processes by which analysts integrated these new psychoanalytic concepts within the actual policies and practices of the British state. The key conceptual insights, which extend previous historical scholarship on psychoanalysis in its domestic and civil contexts, involve the ways in which British analysts shifted their focus from the externalities of conflict—the body counts, the evacuations, the incendiaries—to its internal manifestations. The conceptual establishment of a representational “war inside” that paralleled the tangible “war outside” designated the British citizenry, alongside the British military, a key site of therapeutic intervention. It was at these new sites—the minds, the homes, and the families of British citizens—that psychoanalysis sought to promote a harmonious and, above all, democratic society. Psychoanalysis helped in braiding together the personal and domestic lives of citizens and a broader democratic ideology.

These notions, however, did not merely exist in a psychoanalytic echo chamber. While developed through psychoanalysis, ideas about democratic selfhood and a “war inside” were enacted in various facets of British society. Shapira’s book, then, also unpacks the processes by which psychoanalytic concepts were transmuted into social realities: these ideas were broadcast by Donald Winnicott and the BBC, codified into legal systems and disciplinary policies through the work of the ISTD, and introduced into nurseries and treatment centers by individual analysts like Anna Freud.

In short, imaginatively conceived and sharply written, The War Inside sits at the interface of the private and the public, showing how among the most intimate spaces of human existence—the psychological self—dynamically interacted with spaces of broad social concern. Psychoanalysis, Shapira shows us, was a central catalyst of this interaction. Those interested in the history of psychoanalytic ideas—their formation, their dissemination, and their social implementation—will find much intellectual nourishment in this highly original book.

Andrew Lea is a graduate student in the History of Science, Medicine, and Technology at the University of Oxford.

 

Works Cited

Shapira, Michal. 2013. The War Inside: Psychoanalysis, Total War, and the Making of the Democratic Self in Postwar Britain. Cambridge: Cambridge University Press.

Sitwell, Edith. 1985. “Still Falls the Rain.” In Peter Levi (ed.), The Penguin Book of English Christian Verse. Harmondsworth: Penguin Press.

Medicine Anthropology Theory (MAT) — The Inaugural Issue by Aaron Seaman

17 février 2015 - 6:55pm

In one last “belated” post, the inaugural issue of the new online journal, Medicine Anthropology Theory (or MAT), went up in December! The issue can be found here. In addition to an essay by editors Eileen Moyer and Vinh-Kim Nguyen on the journal itself and how they envision it, there are research articles, think pieces, a photo essay, and several book and film reviews, all listed below. Enjoy!

Articles

Medicine Anthropology Theory: An open-access journal in the anthropology of health, illness, and medicine
Eileen Moyer and Vinh-Kim Nguyen 

The protected lab: Securitization and spaces of exclusion in medical research in East Africa
Denielle Elliott 

This visual essay considers the links between medical research and securitization, and asks how they reconfigure local landscapes in East Africa. Humanitarian aid, including global medicine, has emerged as a ‘military therapeutic complex’, especially in African nations where the HIV/AIDS epidemic has drawn enormous contributions from states and transnational NGOs (Nguyen 2009; Fassin and Pandolfi 2010). One unintended effect of this therapeutic assemblage is a concern with security, particularly for US state institutions conducting research or providing treatment. US research facilities and laboratories are fenced, with access mediated by security guards and locked gates. State actors working overseas live in approved housing, bound by a complex set of regulations about safety and security. This essay and photographs reflect the ways in which physical structures transform local landscapes as part of the global health industrial complex and raise a number of questions about the politics of spaces, both private and public, in humanitarian projects.

An embodied belonging: Amenorrhea and anorexic subjectivities
Karin Eli 

Until the publication of the DSM-V in 2013, amenorrhea was one of the four criteria that comprised anorexia nervosa. Diagnostically, amenorrhea played a definitional role, dividing the ‘strictly’ anorexic from their ‘subthreshold’, menstruating peers; however, the implications that menstrual cessation, and menstruation itself, held for the lived realities and identities of women with anorexia remain under-explored. In this article, I examine the positioning of menstruation and amenorrhea in the narratives of Israeli women diagnosed with eating disorders during the eras of the DSM-IV and DSM-IV-TR. I find that the participants’ narrative uses of amenorrhea mirrored, and at times explicitly engaged with, the official diagnosis of anorexia nervosa. Notably, although the participants invoked amenorrhea as a defining sign of illness, they did not cast menstruation as a sign of health rather, they spoke of their menstrual periods as contradicting their anorexic-identified selves. Amenorrhea, then, emerged as central in the embodied making of anorexic subjectivities.

Changing cartographies of health in a globalizing world
Ted Schrecker 

Anthropologists have described, often in eloquent detail, local destruction of opportunities to lead a healthy life (the social determinants of health) attendant on the macroscale economic processes conveniently described as ‘globalization’. Recent reorganizations of production and finance redraw maps both literal and metaphorical of the inequalities that affect health. I argue that it is essential to focus attention on the common origins of such local destructions in new modalities and power structures of global capitalism, and in doing so to focus on what William Robinson has described as a shift from ‘territorial’ to ‘social cartographies’. These include a number of cross-border ‘emerging markets’ or bidding wars that are relevant to health and its social determinants. The article sets out three propositions about how the social science of health disparities should respond to globalization, emphasizing possibilities for research on globalization and health that draw on the complementary perspectives of anthropology and political economy.

‘Making known’ or ‘counting our children’?: Constructing and caring for children in epidemic South Africa
Lindsey Reynolds 

The article explores how regimes of documentation, quantification, evidence, and accountability have come to shape encounters between program implementers, researchers, young people, and caregivers in one locality in northeastern KwaZulu-Natal, South Africa. Rather than simply critiquing the overemphasis on counting and accounting in global health, I examine the effects of these processes on the provision of services to young people and families. For those whose lives had been systematically excluded from view, processes of form filling could in fact be construed as services in themselves. Further, encounters structured around form filling could work to facilitate other modes of engagement, centered on the construction of forms of recognition, reciprocity, and obligation, and mediated by complex networks of patronage and dependence. Drawing on these findings, the article describes how local histories and contemporary life experiences can shape the ways in which technologies of global health are taken up, and their effects on everyday life.

Think Pieces

Medical stratification in Vietnam
Martha Lincoln

Market transition in Vietnam is known to have fueled health disparities, but racialized and nationality-linked aspects of the country’s medical stratification have received less attention, despite the growing presence of foreigners using the health system. Field experiences reveal the country’s increasing health and medical inequity – legible in the social, linguistic, economic, and physical distinctions between public health stations staffed by government employees and the private clinics serving mostly expatriates. Ethnographic interviews and experiences of receiving care in both public and private facilities inform my argument that the privatization of Vietnam’s health sector produces racialized, classed, and citizenship-linked forms of medical profit, privilege, segregation, and risk – trends visible both in recent debates over US health policy and recent episodes of pandemic disease outbreak.

How did we get here? ‘It does not require a big brain to understand.’: The ‘Greek Crisis’, care, and health care
Giorgos Kostakiotis and Deanna J. Trakas

The economic crisis in Greece, which officially showed itself in 2008, is blamed for a wide variety of negative changes in the country’s social, political, and moral fabric. Health care – and the deficits of a medical system already under stress even before the crisis – are particularly central in public complaint and political debate. Issues of community and family care have emerged with a strength that challenges the conventions of earlier generations. This essay shifts the gaze away from the well-documented indictments of the deficiencies of the Greek health care system to look at the ways in which families and communities are working to provide care within the changing landscape.

Heaviness, intensity, and intimacy: Dutch elder care in the context of retrenchment of the welfare state
Barbara Da Roit and Josien de Klerk

In the Netherlands the recent shift to a ‘participation society’ has led to a reconfiguration of health care arrangements for long-term care. The new long-term care act, scheduled to commence January 2015, forms the political realization of the participation society: people are expected to decrease their dependency on state provisions and instead become self-sufficient or dependent on family and community solidarity. In this Think Piece we argue that the implicit references of policy makers to pre-welfare state community solidarity and self-sufficiency do not adequately consider the historical and social embeddedness of care. Referring to Rose’s concept of ‘politics of conduct’ we argue that in framing care as a moral obligation, the current politics of conduct may obscure the physical and psychological heaviness of intimate care between family members, the diversity of care relations, and their sociohistorical embeddedness.

No smoking within nine metres of discipline limits
Simone Dennis

I seek to open the social practice of smoking to anthropological enquiry that has been largely caught up in the agenda of cessation – to the point that it is difficult to examine it outside this frame without being accused of advancing the interests of Big Tobacco. Analysis has also been foreclosed by adherence to frames that privilege rationality. Smoking behaviour becomes understandable and translatable via explanations of addiction or ignorance: it is rational for the addict to source her drug, and rational for the smoker ignorant of its harms to continue smoking. Equally, using a rational frame anthropologists might explain smoking practice in relation to pleasure – if they are not wedded to a cessation agenda – as maximising pleasure might also be rational, as might any practice if only one can understand the agent’s motivations. I argue for an anthropological analysis of smoking that permits more than translation.

When comparison comes first: Reflections on theory in medical anthropology
Alice Street

This think piece draws on experiences of fieldwork in a Papua New Guinean hospital to reflect on tensions between political engagement and ‘deep’ comparison in medical anthropology theory. The paper argues that, contrary to the assumptions implicit in recent critiques of ‘suffering slot’ anthropology, paying attention to the workings of power does not preclude ontological comparison. Through a comparison of the different kinds of visibility sought by patients and doctors in the public hospital, I argue that the question of power re-surfaces in relation to the mutually entangled infrastructures required to realise those different projects.

Photo Essay

Mapping senses of place in an urban drug scene
Danya Fast

This photo essay is a collaboration between myself and one of the young people with whom I conduct research in Vancouver, Canada. Jordan (a pseudonym) was eighteen years old when he hitchhiked from Toronto to Vancouver in 2002. Once there, he told me, his addiction to heroin ‘completely took over’, and he became entrenched in the cycles of drug use, crime, and destitution that ‘trapped’ him in Vancouver’s Downtown Eastside. He and I met in 2008, when he was twenty-four years old. He took these photographs approximately four years later.

Book and Film Reviews

Powerless science? Science and politics in a toxic world (Soraya Boudia and Nathalie Jas, 2014)
Reviewed by Janelle Lamoreaux

Abortion in Asia: Local dilemmas, global politics (Andrea Whittaker (ed.), 2013)
Reviewed by Erica van der Sijpt

Migranten in tijd en ruimte: Culturen van ouder worden [Migrants in time and space: Cultures of ageing] (Antoine Gailly, Redouane Ben Driss, Stefaan Plysier, and Lili Valcke, 2011)
Reviewed by Sjaak van der Geest

Child care in a globalizing world: Perspectives from Ghana (Christine Oppong, Delali M. Badasu, and Kari Waerness (eds.), 2012)
Reviewed by Cati Coe

Nieuw Leven: Geboorte in Fictie [New Life: Birth in Fiction] (Arko Oderwald, Koos Neuvel, Willem van Tilburg, and Ruth Bergmans (eds.), 2012)
Reviewed by Lianne Holten

Ik Gebaar, Ik Leef / I Sign, I Live (A film by Anja Hiddinga and Jascha Blume, 2012)
Reviewed by Annelies Kusters

Life in Crisis: The Ethical Journey of Doctors Without Borders (Peter Redfield, 2013)
Reviewed by Pride Linda

The Alzheimer Conundrum: Entanglements of Dementia and Aging (Margaret Lock, 2013)
Reviewed by Jolanda Lindenberg

Mestizo Genomics: Race Mixture, Nation, and Science in Latin America (Peter Wade, Carlos López Beltrán, Eduardo Restrepo, and Ricardo Ventura Santos, (eds.), 2014)
Reviewed by Abigail Nieves Delgado

The New Arab Man: Emergent Masculinities, Technologies, and Islam in the Middle East (Marcia C. Inhorn, 2012)
Reviewed by Fiona R. Parrott

Patients and Agents: Mental Illness, Modernity and Islam in Sylhet, Bangladesh (Alyson Callan, 2012)
Reviewed by Nasima Selim

“Body Leads”: Medicalizing Cultural Difference, or, what are we doing when we Say Putin Has Asperger’s Syndrome? by Cassandra Hartblay

17 février 2015 - 6:31pm

A recent USA Today article described a report from a Department of Defense think tank study that suggested that President of the Russian Federation Vladimir Putin has “neurological abnormalities” and, perhaps, an Autism Spectrum Disorder. The report, part of a project entitled “Body Leads,” which claims to use analysis of bodily behavior to suggest underlying neurological states, was originally written in 2008, and made public through a reporter’s Freedom of Information Act request. The report became the subject of the USA Today article, which, published at a moment when US-Russia diplomatic relations are at a low point over ongoing violence in Ukrainian territory, seemed pitched to create a sensationalist media frenzy.

Indeed, the original report, which became available through various blogs, is itself sensationalist, and, sensationally poorly crafted. The argument presented in the document is of such low quality it is somewhat befuddling that it has received any attention at all. Although the report was allegedly created under the auspices of a federal government funded think tank its authority is marred by rampant grammatical errors, sloppy organization, poor application of theoretical concepts, unprofessional combination of methods and research sources, and general confusion about key psychology concepts. Indeed, it would have hardly passed an upper level undergraduate course in psychology or global studies, let alone be accepted by any peer reviewed professional journal.

The poor quality of the report itself seems to be the original reason for the FOIA request: the DOD think tank that produced the report came under media scrutiny in 2014. An article in Politico and other commentaries have suggested that the small organization was an ineffectual ideological holdover from a previous era, citing the “Body Leads” report as evidence.

Yet, this original intention behind the media’s move to publicize the report has taken a backseat to popular response to the seemingly face value claim presented in the USA Today article title: that a US government agency said that Putin has Asperger’s. The response, in the days following the article’s publication came from two major constituencies: the Russian media, and the neurodiversity and autism advocacy communities. These constituencies insert this article into broader debates about, respectively, the trend in US media and defense discourse of demonizing Putin as a person and a leader, and the stigmatizing implication of using ASD diagnoses to characterize individuals as suspect, untrustworthy, and other, stigmatizing an already disadvantaged community.

To be clear, I don’t think the report itself does merit much attention; however, I am interested in the broader response to the document in the few days following the USA Today article. I find this convergence interesting, not only because I happen to be someone who studies disability and Russia, and disability in Russia, but because my attention to those subjects has led me to be curious about the ways in which disability stigma gets reproduced on a global scale.

Particularly, I’m interested in whether or if the two lines of reasoning entangled here – the stigmatization of a particular diagnostic category, and the racialization of a foreign leader – and the ways these ideas circulate in public debate, may have more in common than is immediately obvious. This critique of the popular response to the Body Leads report is related to an underlying anthropological objection to the content of the report itself: the medicalization of behavior that is better described as cultural difference. I argue that this episode offers a very specific type of pathologization, and propose that it may serve us well to have a specific name for this mode of applying stigma to both an individual and medicalized population.

The Russian media response

The Russian media have broadly, and I would say, quite correctly, described the report as “an attempt to demonize Putin” (gazeta.ru). US foreign policy and Area Studies communities of various political persuasions have overwhelmingly agreed. When Dmitry Peskov, Putin’s press secretary, was asked to comment by American media, he said, “This is stupidity, not deserving of commentary.”

And yet, naturally, the Russian media was quick to call on pundits and Russian autism experts to weigh in on and spin the story. The state-run online news source gazeta.ru cited Russian political pundit Aleksei Makarin’s assertion that “this line of garbage translates to the American public the idea that ‘the Russian president has such a problem that it is impossible or very difficult to come to an agreement with him, and this is not the result of geopolitics, but of psychology.'” In fact, I agree with this assessment.

If there was any doubt about the perception of autism in Russian society, the response to the accusation that Putin carries such a diagnosis has definitively and profoundly described a society that considers autism and ASD people not only deviant but downright dangerous. The gazeta.ru article cited a Russian psychologist’s characterization of ASD:

People with this syndrome are different in that they have a very low emotional intellect, that is, in the most obvious expression, low emotionality and sociality. Regular and totally ordinary things the rest of us don’t even pay attention to— rituals, cooperation with others, tenderness, and emotional expression—all of these work very poorly for them.

This explanation is given as a way of stating that obviously no individual with such characteristics could possibly have achieved a high level position in the Russian government, be charged with leading a country, or in general function as a social actor. That is, in the Russian media response, while Putin is defended, he is done so at the expense of the social personhood of anyone with an ASD diagnosis.

 

The ASD and Neurodiversity Response

As the Russian media response makes clear, the Body Leads report seems aimed only to insult and dehumanize Putin. Yet the unintentional discursive effect of the media coverage served— in both Russia and the US—to further stigmatize and pathologize people with ASD.

Russianist and ASD parent-advocate Eliot Borenstein put it,

It’s one thing to pathologize a world leader, and quite another to find one’s own medical, psychological, or social status invoked as a pathology. The implication is not only that Putin is difficult and deviant because of an alleged diagnosis, but that the diagnosis itself not only is, but must be seen as a stigma.

Elsewhere around the internet, neurodiversity and ASD advocates were dismayed and disturbed by the outright hateful and discriminatory attitudes toward people with ASD diagnoses that the story prompted in comment threads, Twitter feeds, and Facebook posts. Disability advocacy organizations were quick to post links and follow the story. In particular, the neurodiversity movement seeks to de-stigmatize ASD by reframing neurological difference not as pathological, but as a natural component of human diversity—variation, which, in given situations may offer a strength rather than a weakness. This high profile example of how psychological notions of abnormality and difference can be invoked to pathologize individuals and groups of people offered an example of precisely the types of discursive discussion that neurodiversity advocates argue can be demeaning to ASD diagnosed people. Akin to the ways in which the intellectual disability community, in recent years, has organized campaigns to urge fellow citizens to refrain from using the “R-Word” (retarded) as an insult, the Body Leads fiasco was a powerful reminder that to call someone autistic, remains, for many, a slur.

 

Pathologizing Discourse, Pathologizing Culture

For anthropologists, perhaps one of the most jarring elements of reading the Body Leads is the repeated use of cross-cultural misunderstandings and miscommunication as evidence of Putin’s alleged neurological abnormality.

In one glaring case, the Body Leads report draws on an interview published in a Time Magazine, which was billed as an introduction to Putin for the American readership. Taking the descriptions from the article as evidence, the Body Leads report states that

Putin’s neurological perception is challenged and autism experts say this can manifest in hypersensitvity, social shyness and behavioral withdrawal from stimulation. […] Here’s another description of the Russian President’s affect during the interaction [from a Time Magazine article]:

‘He is impatient to the point of rudeness with small talk’

‘Charm is not part of his presentation of self—he makes no effort to be ingratiating. One senses that he pays constant obeisance to a determined inner discipline.’

‘… he misread several of our attempts at playfulness.’

‘Putin himself is sardonic but humorless. In our hours together, he didn’t attempt a joke…’

Theoretically Putin’s brain behavior abnormalities affect his social engagement and defensive behaviors, including, sensing whether the environment is safe or, others trustworthy.

Before we can get to the deeper importance of the logic in this passage, I must first state that the passage muddles ASD diagnostic criteria with the theory of the polyvagal nervous system, mischaracterizes autistic or people with ASD as unable to trust others, and draws on descriptions of Putin in a popular journalism article in order to make a neurological diagnosis.

This last issue begins to get at the heart of the matter that I’d like to highlight. The journalist’s description of Putin that is excerpted here was intended to present Putin to American readers as a quintessentially Russian leader. It therefore intentionally presented several tropes of Russian-American cultural mismatch: that humor may be lost in translation, that Russian conversational style is often taken to be abrupt by Americans, and that Russians prefer silence to small talk or talking for the sake of talking, perceiving it to be an indication that someone is not taking a situation seriously, while Americans perceive small talk as an important social lubricant.

We could imagine the absurdity of a report from the Kremlin that stated, based on a journalistic description of the differences between American and Russian cultural behaviors, e.g. that Obama’s penchant for smiling broadly when greeting people at the commencement of serious proceedings is a sign of poor mental faculties, a failure to grasp the gravity of a situation, or that he is possibly drunk (as Russian cultural logics would read these behaviors). Of course, this is not “science” but it would be a reasonable interpretation for a Russian to make were someone to act like an American in a social setting.

The Body Leads report claims to interpret bodily movements and facial expressions as indicative of underlying neurological traits. Nowhere does the report recognize that bodily movements, embodied modes of communication, and habits like facial expressions and posture are shaped by culture and upbringing as well as by biology.

Anthropologists have long observed that how close people stand to one another when they talk, how they modulate the volume of their voice to convey importance, and what settings they consider appropriate for particular types of social interactions are culturally mediated. That is, they depend on one’s social class, one’s upbringing, the learned modes of social interactions and norms and expectations of one’s peers. What all world leaders must grapple with is the problem of establishing communication with their peers who have come from a background with wholly different of social norms of communication.

Taken at face value the Body Leads report suggests that it is permissible to ignore variable cultural norms when interpreting behavior, a proposition which most psychologists and certainly anthropologists, would reject. Moreover, the report suggests that cultural habits such as conversational style and bodily comportment can be used as evidence of inferiority.

In a section of the report, the author misrepresents an explanation of a neuroscience finding about brain function – called the polyvagal theory – to suggest that Putin operates with a “more primitive” section of his brain than other, or, normally developed humans. The report quotes research psychiatrist Dr. Stephen Porges, suggesting that “Putin is primarily perceiving and expressing himself from the earlier adaptive fight/flight or flee stages of behavior” (2008:5). It is probably the case that Dr. Porges was taken out of context [I was not successful in reaching him to comment]. His reference to “earlier adaptive stages” is a rhetorical shorthand for referencing particular neurological structures, or elements of the brain. He is attempting to make clear for other scientists which particular part of the brain he is referencing; a neuroscientist or psychologist, when they say ‘the reptilian brain,’ do not necessarily mean to imply that the functions of that neurological component are pathological, but rather that they are shared between a great many species, including reptiles, as well as mammals. But suggesting a fight or flight behavioral pattern does seem to suggest a lesser-evolved functional capacity than those who might make other, more socially adept, choices. And, this is precisely how the Body Leads report interprets this comment: that Putin’s autistic, reptilian, primitive, developmentally abnormal brain leads to pathological behavior.

 

Pathologizing Enemies

As many others have already pointed out, the report seems nearly solely intended to pathologize Putin’s behavior as a way of undermining his credibility as a leader. Strangely, when Body Leads does offer policy advice, it comes oddly close to recommending cultural sensitivity:

Those that work with him in Russia or, from abroad like US officials will likely benefit by offering him recommendations that proffer a set of tested data that result in one outcome and alternatively, another recommendation with facts that may produce a different outcome — in order to get his attention. Otherwise, unsubstantiated recommendations may be lost in his perceptual system that simply has trouble taking in information differently.[sic] (14)

In this iteration, difference and adaptability can only be conceptualized as an individual pathology. Body Leads ascribes that difference not to social class, or cultural norms, or expectations for diplomatic interaction, but to neurobiological elements of Putin the physical body, which is posited as outside of culture, or, which amounts to the same, as existing in an single cultural system of Euroamerican normative imagination.

As Borenstein observed,

This is far from the first time that Western elites have entertained themselves with long-distance diagnosis of Russian leaders.  If some scholars and pundits are to be believed, we can understand both Peter the Great and Lenin as victims of syphilis, and Ivan the Terrible as suffering from either encephalitis or mercury poisoning (somebody alert Jenny McCarthy!)  And don’t even get me started on Stalin.

Setting aside the neo-Cold War implications of a revived discourse of Putin-as-Enemy, which has emerged in full-force in recent years and especially since the Russian Annexation of Crimea in the spring of 2014, there is a particular tradition of Euroamerican enemy-making that seeks to vilify a foreigner or foreign leader by depicting him as subhuman. This tactic is at the core of how enemies are created aesthetically and discursively. Such a tack has been used historically against newly arrived immigrant classes in the United States, by the US hyper-conservatives against Barack Obama, and against foreign leaders in wartime. A recent Reddit thread responding to the Putin-ASD topic argues as much, noting that “psychology from a distance” becomes a means of casting a political-ideological slur.

To vilify a person or group by implying subhuman or “lesser-evolved” characteristics can be understood as a component of what critical race theorists call racialization. Racialization describes a tactic of characterizing that a group of people in terms of biological traits and ethnic identity, in such a way so as to assert that this group does not belong to some other social whole. A primary tactic of racialization is asserting the biological absurdity or inferiority of this now-defined group, serving to legitimize political dominance over it. The move to diagnosis Putin as psychologically abnormal in the Body Leads report seems to fit into this schema.

Medical anthropologists have long recognized a related process, medicalization. Medicalization occurs when experts redefine social or cultural characteristics into individual pathologies in need of medical control or management. From a critical perspective, medicalization describes instances in which that medicine and science become systems of social control or the implementation of power. Those whose bodies are the subject of medicalization are described as unruly or undisciplined, and in need of therapeutic intervention in order to assimilate them with — or keep them from disrupting — the normative social order.

What I think Putin’s alleged ASD suggests is that we need a new term, one that sits somewhere between racialization and medicalization. This term should describe a specific form of pathologization that has to do with the use of stigmatized disabilities to dehumanize the both the accused and those bearers of the stigmatized diagnosis. Like racialization, this posits an evolutionary telos or progress in which the accused is behind or deficient, and like medicalization, it uses medical authority to assert the right to speak about others’ bodies and behaviors. I want to suggest that we might call this mode of pathologization disorderization.

Like racialization, disorderization posits an evolutionary telos with respect to which the accused is behind or deficient. But while racialization is a process that applies to groups of people, like medicalization, disorderization locates deficiency in an individual body. Cultural behavior is at once biologized and treated as deviant. Disorderization is a mode of thinking that misconstrues social and cultural dynamics as rooted in individual, rather than racially shared, biological difference. This is a brand of pathologization that takes its cues from a sort of biological determinism in which the cultural disappears and all behaviors and habits are rooted in medically-defined bodily systems. By biological determinism, I mean a misapplication of what psychology as a discipline calls behaviorism; psychology’s focus on observable behaviors exhibited by an individual goes uncontextualized in terms of broader cultural norms and biology is always the underlying cause of all social behaviors. Where racialization pathologizes social groups or individuals within those groups by applying medical diagnostics to the group as a whole, and medicalization pathologizes individuals by ignoring social forces, disorderization pathologizes both the group – ASD individuals – and the implicated individual – Vladimir Putin.

A disorder implies both a medical condition of abnormality that is less-than or out-of-synch-with or fails-to-achieve some medically established normative baseline. As many in disability studies and anthropology have demonstrated, the medically normative body is a construct based on the abstractions of statistics and does not exist in reality. Disorder also implies chaos, or a failure to align with expectations and norms. Expectations and norms are always embedded in cultural systems. People whose behavior consciously or unconsciously defies cultural norms of order—whether because they have a different cultural background, because their bodies refuse to conform to biological standards, or because they have consciously chosen to defy norms—are often branded disorderly. In this sense, a mode of pathologizing called disorderization would describe all of these elements.

Some might argue that medicalization encompasses both disorderization and racialization; others will suggest that medicalization is always a component of racialization, and that there is nothing special about the Putin ASD scenario as an instance of racialization (except, perhaps, that Americans often don’t notice that they are racializing Russians, who are considered to be Caucasian). My point is that there is a certain pattern to pairing medicalized traits and racialized inferiority that has implications for both bearers of the medicalized trait, and for bearers of the group identity in question. It is this intersection that I am highlighting; we might consider disorderization, then, a specific form of both racialization and medicalization. A schoolyard bully calls another kid a queer or a retard; a plastic surgeon advertises eyelid surgery for Asian Americans; a college student remarks to her friend that she is “so ADHD right now.” The oppressive weight of these utterances is intentionally directed at one subject, and, as a side effect, contributes to the medical stigmatization of another. I find this pattern to be worthy of analysis in its own right; I would call it disorderization.

And that, I argue, is precisely what we are doing when we say that Vladimir Putin has Asperger’s Syndrome.

 

Cassandra Hartblay is a PhD candidate in Anthropology at the University of North Carolina at Chapel Hill. She will defend her dissertation, Inaccessible Accessibility: An Ethnography of Disability and Globalization in Contemporary Russia, in March 2015. Her work has received recognition and support from the National Science Foundation, the US Department of State Title XIII Program, the UNC-CH Program in Sexuality Studies, and the Society for Disability Studies. Her writing on disability studies and the former Soviet Union is published in Disability Studies Quarterly, The Journal of Social Policy Studies, and in the 2013 edited volume Learning to See Invisible Children: Inclusion of Children with Disabilities in Central Asia.

 

Sources:

“Kremlin Spokesman Says Putin Does Not Have Asperger’s.” 2015. Accessed February 9. http://www.usatoday.com/story/news/world/2015/02/06/kremlin-denies-putin-aspergers/22971029/.

“No, Putin Does Not Have Autism | The XX Committee.” 2015. Accessed February 13. http://20committee.com/2015/02/06/no-putin-does-not-have-autism/.

“Pentagon 2008 Study Claims Putin Has Asperger’s Syndrome.” 2015. Accessed February 9. http://www.usatoday.com/story/news/politics/2015/02/04/putin-aspergers-syndrome-study-pentagon/22855927/.

“The Pentagon’s Secret Putin Diagnosis – Elizabeth F. Ralph – POLITICO Magazine.” 2015. Accessed February 13. http://www.politico.com/magazine/story/2015/02/putin-autism-pentagon-114937.html#.VN1mWsZx_KB. “Secretive Pentagon Think Tank Knows No Bounds – Philip Ewing – POLITICO.com.” 2015. Accessed February 13. http://www.politico.com/story/2014/03/office-of-net-assessment-pentagon-104591.html.

“The Curious Incident of Putin’s ‘Asperger’s Syndrome’” Eliot Borenstein.” 2015. Accessed February 9. http://www.huffingtonpost.com/eliot-borenstein/the-curious-incident-of-putins-aspergers-syndrome_b_6625634.html.

“The Pentagon Released an Expert Report on Putin’s Health to USA Today.” In Russian.  2015. Accessed February 9. http://tvrain.ru/articles/pentagon_raskryl_dlja_usa_today_zakljuchenie_ekspertov_o_zdorove_putina-381605/.

“Peskov Called the American Media’s Claim About Putin’s Asperger’s Stupid” In Russian. 2015. Accessed February 9. http://www.gazeta.ru/politics/2015/02/05_a_6402005.shtml.

 

The Practice of Constraint in Psychiatry: Emergent Forms of Care and Control — A special issue of Culture, Medicine, and Psychiatry by Aaron Seaman

15 février 2015 - 4:48pm

I must apologize for the belated notice, but I want to draw attention to the December issue of Culture, Medicine, and Psychiatry, which is a special issue entitled “The Practice of Constraint in Psychiatry: Emergent Forms of Care and Control.” Of the issue and its five articles, the guest editors, Paul Brodwin and Livia Velpry, write of the issue in their introduction:

The work of psychiatry has always revolved around the twin imperatives of care and custody. In an older model of psychiatric power, confinement and coercion were accomplished through isolation from society. The asylum became the ultimate symbol of such power. It arose in the long historical process Foucault termed “the great confinement,” and it reached its ultimate expression in the “total institution” exposed by Goffman in the mid-20th Century. As the landscape of mental health shifted, anthropological attention turned away from the asylum to focus on other topics: psychiatry’s contribution to social control in the neo-liberal state, as practices of governmentality (Foucault 2012), new technologies of the self (Rose 1996) and pharmaceuticalization and the global health movement (Biehl and João 2011).

Constraint nevertheless remains a common practice even in our post-asylum era. This special section of Culture, Medicine, and Psychiatry examines contemporary tactics of psychiatric constraint through studies of mental health settings in the USA and France. The four papers connect abstract arguments about disorder, ethics, and subjectivity to the rough edge of practice, where the interests of clinicians and patients most sharply diverge. The mandate not only to treat people but also to control them has produced diverse practices of constraint and on-going struggles about their legitimacy. The authors here take up constraint as a therapeutic value, social logic, work routine, and a challenge to the moral self-regard of front-line clinicians.

The Ethics of Ambivalence and the Practice of Constraint in US Psychiatry
Paul Brodwin 

This article investigates the ambivalence of front-line mental health clinicians toward their power to impose treatment against people’s will. Ambivalence denotes both inward uncertainty and a collective process that emerges in the midst of everyday work. In their commentaries about ambivalence, providers struggle with the distance separating their preferred professional self-image as caring from the routine practices of constraint. A detailed case study, drawn from 2 years of qualitative research in a U.S. community psychiatry agency, traces providers’ response to the major tools of constraint common in such settings: outpatient commitment and collusion between the mental health and criminal justice systems. The case features a near-breakdown of clinical work caused by sharp disagreements over the ethical legitimacy of constraint. The ethnography depicts clinicians’ experience of ambivalence as the complex product of their professional socialization, their relationships with clients, and on-going workplace debates about allowable and forbidden uses of power. As people articulate their ethical sensibility toward constraint, they stumble over the enduring fault lines of community psychiatry, and they also develop an ethos of care tailored to the immediate circumstances, the implicit ideologies, and the broad social contexts of their work.

Confinement and Psychiatric Care: A Comparison Between High-Security Units for Prisoners and for Difficult Patients in France
Livia Velpry and Benoît Eyraud

This paper examines the uncertain meaning of confinement in psychiatric care practices. Investigating the recent expansion of high-security units in French public psychiatry, for patients with dangerous behavior (units for difficult patients) and for suffering prisoners (specially equipped hospital units), we aim to understand psychiatry’s use of confinement as part of its evolving mandate over suffering individuals with violent behavior. Although historically the epicenter of secure psychiatric care for dangerous individuals shifted from the asylum to the prison, a review of public reports and psychiatric literature demonstrates that psychiatrists’ attempt to reclaim confinement as part of therapeutic practice underpinned the recent development of new units. Institutional-level analysis emphasizes psychiatry’s enduring concern to subordinate social defense motives to a therapeutic rationale. Analyzing local professionals’ justifications for these units in two emblematic hospitals, the paradoxical effects of a security-driven policy arise: they allowed the units’ existence, yet prevented psychiatrists from defending a genuine therapeutic justification for confinement. Instead, professionals differentiate each unit’s respective mission, underlining the concern for access to care and human dignity or defending the need for protection and safety from potentially dangerous patients. This process reveals the difficulty of defining confinement practices as care when autonomy is a core social value.

Practicing and Resisting Constraint: Ethnography of “Counter Response” in American Adolescent Psychiatric Custody
Katherine Hejtmanek 

Based on extensive ethnographic research in psychiatric custody for adolescents, this article uses the creation of, implementation of, and resistance to a treatment model to reveal issues of constraint in American psychiatric treatment. The treatment model is called Counter Response. As a model Counter Response shifts the treatment focus in a total institution for mentally ill youth from the youth themselves to the staff response to the youth. This article uses Counter Response as a case study to illustrate the close ties between constraint and autonomy in psychiatry. It also shows how models like Counter Response reflect the power of unregulated treatment paradigms in American adolescent institutional psychiatric intervention. Finally, the article demonstrates that resistance to Counter Response reveals a tension American practitioners have with psychiatry’s constraining power.

Learning Constraint. Exploring Nurses’ Narratives of Psychiatric Work in the Early Years of French Community Psychiatry
Nicolas Henckes 

This article uses narrative analysis to understand how mental health professionals working in a pilot experiment in community psychiatry in France between 1960 and 1980 made sense of their work experiences. Based on a collection of essays written by these professionals as part of their training as well as on other archival materials, the article explores writing practices in post-war French psychiatry as ways of constructing and negotiating moral commitments to work. The first three sections of the article give some background on mental health nursing in France in the immediate post-war period. The subsequent three sections examine how the professionals elaborated on their experiences in their writings, focusing on three different levels: first, the narrative voice used in the essays; second, the learning processes described by trainees; and finally, the ways in which they negotiated discursively the requirement to do emotionally well at work.

Psychiatry with Teeth: Notes on Coercion and Control in France and the United States
Anne M. Lovell and Lorna A. Rhodes 

“Psychiatry with teeth”: with just three words, a head psychiatrist in Lyon, France, captures the confined spaces and internal discipline of a new type of intensive treatment center for “difficult patients” (Velpry and Eyraud 2014). His pithy phrase provides a vivid yet disconcerting image for the ‘rough edge’ of psychiatry where, as the editors of this issue of Culture, Medicine, and Psychiatry devoted to emergent forms of care and control remind us, constraint and coercion signal a fundamental division between patients and clinicians1 (Velpry and Brodwin 2014). …As the editors announce in their introduction, the twin imperatives of care and confinement, cure and custody, have always defined psychiatry. Why then focus particularly on France and the United States? And what, precisely, is emergent today?

Ethics, Epistemology, and Engagement: Encountering Values in Medical Anthropology — A special issue of Medical Anthropology by Aaron Seaman

13 février 2015 - 6:07pm

The first issue of Medical Anthropology in 2015 is a special issue, entitled “Ethics, Epistemology, and Engagement: Encountering Values in Medical Anthropology.” In their eponymous introduction to the issue, Hansjörg Dilger, Susann Huschke, and Dominik Mattes write:

The contributions of this special issue discuss moments of uncertainty and friction that researchers experience regarding the ethicality of their research. They render transparent how, as anthropologists, we sometimes feel overwhelmed, inadequate, and challenged to decide how to behave in moral and ethical ways, and may even doubt the value of conducting fieldwork on certain topics at all. Asking these questions—and not silencing them in scholarly discussions and texts in our desire ‘to make it all right’—is crucial for the discipline, though knowing that any possible answer will always be partial, subjective, and in need of continuous modification.

Information about the issue’s six articles follows below.

Anthropology, Ethical Dissonance, and the Construction of the Object
Sylvie Fainzang

In this article, I discuss certain questions relating to the ethical difficulties faced by anthropologists when dealing with two different social groups and when one group holds a position of dominance over the other. In the first example, I draw on my work on doctor-patient relationships in France; in the second, on a study on reproduction in immigrant African families from Mali and Senegal, living in polygynous households in France. I use these examples to explore questions of positionality, beneficence, and potential harm. I show the choices I made in order to construct an epistemologically ethical object.

Voice, Boundary Work, and Visibility in Research on Sex Work in Morocco
Anne Montgomery 

How might the ethnographer conduct research on health and suffering among populations who would rather remain hidden? Drawing on my research with female sex workers in southern Morocco, I suggest and demonstrate an approach that allows interlocutors’ discretionary practices to guide ethnographic inquiry. I show how boundary work—as a politics of visibility founded on practices of discretion, concealment, and distancing—emerged as central to my interlocutors’ livelihood strategies and their efforts to enact moral personhood, integrate themselves into networks of solidarity, and articulate social critiques. A methodological focus on discourses and practices of boundary drawing, I argue, was essential for conceptualizing and representing the suffering of the women with whom I worked. Using boundary work as a guide, the ethnographer does not give voice to suffering, but learns how suffering is already voiced as part of attempts to survive, aspire, and become.

Troubling Objectivity: The Promises and Pitfalls of Training Haitian Clinicians in Qualitative Research Methods
Pierre Minn

Building research capacity is a central component of many contemporary global health programs and partnerships. While medical anthropologists have been conducting qualitative research in resource-poor settings for decades, they are increasingly called on to train “local” clinicians, researchers, and students in qualitative research methods. In this article, I describe the process of teaching introductory courses in qualitative research methods to Haitian clinicians, hospital staff, and medical students, who rarely encounter qualitative research in their training or practice. These trainings allow participants to identify and begin to address challenges related to health services delivery, quality of care, and provider-patient relations. However, they also run the risk of perpetuating colonial legacies of objectification and reinforcing hierarchies of knowledge and knowledge production. As these trainings increase in number and scope, they offer the opportunity to reflect critically on new forms of transnational interventions that aim to reduce health disparities.

Giving Back: Activist Research with Undocumented Migrants in Berlin
Susann Huschke 

In this article, I draw on my doctoral field work in Berlin (2008–2010), on the illness experiences of undocumented Latin American labor migrants, and on my work as an activist for the Berlin-based nongovernmental organization Medibüro, an anti-racist migrant health organization. I highlight how my attempts to ‘give back,’ and the various forms of engagements and commitments that resulted from it, shaped my relationships with actors in the field, the data I gathered, and the analytical framework I employed. I offer solutions on how to address these (unintended) effects of activism, and highlight the unique potential of activist research in regard to the forms of data available to the researcher and in gaining and retaining field access. By probing into some of its concrete methodological and analytical implications, I explore how to do activist research.

The Emotional, Political, and Analytical Labor of Engaged Anthropology Amidst Violent Political Conflict
Rosa Cordillera Castillo 

Given the harsh realities that people live through in southern Philippines, where there is rife human rights violations and violent political conflict, it becomes difficult and arguably unethical for anthropologists to assume a position of neutrality. Following calls for engaged anthropology, I contend that engagement entails simultaneously an emotional, political, and analytical labor and troubles the separation of the self and other. I suggest that a way to labor through these challenges of researching suffering, and the reciprocal obligations this implicates, is to utilize feminist reflexivity and epistemic reflexivity. These necessitate an objectification of the self and one’s intellectual field to achieve an epistemological break that would lead to an understanding of the other and their realities.

Emotion Work, Ethnography, and Survival Strategies on the Streets of Yogyakarta
Thomas Stodulka

Anthropological research with street-related children, adolescents, and young adults raises epistemological, methodical, and ethical predicaments. In this article, I illustrate the advantages of an anthropology that acknowledges the ethnographer’s emotions as valuable data when conducting research with marginalized communities. By drawing on my own experiences when conducting long-term fieldwork, I argue that systematic self-reflexivity and an emotionally aware epistemology enhance both the anthropologist’s emotional literacy and his or her understanding of informants and interlocutors. The integration of the ethnographer’s emotions in the analysis and interpretation of ethnographic data can assist in formulating anthropological theory, challenging the limits of traditional empiricism, and raising emotions to a category of epistemic value.

Listening with Veena Das to Ordinary Ethics by Michael M. J. Fischer

12 février 2015 - 7:31pm

Affliction: Health, Disease, Poverty

by Veena Das

Fordham University Press, 2014. 255 pages

 

In Affliction: Health, Disease, Poverty  (Fordham 2014) we listen with Veena Das to ordinary ethics in challenged lives of poverty, illness, and family relations; and in three often conflicting registers of (a) advocacy, (b) moral engagement, and (c) acknowledgement of inherent uncertainties (in the very fabric of living these lives, including hers and ours). [1]

(1) Advocacy. Somewhere – in the vast practical and dramatic spaces – between the disconnects of global health models constructed with poor/flawed statistics and piecemeal moralistic nudging of behavioral economists relying on naïve individualistic psychological models rather than intimate knowledge of how lives are lived — somewhere in this vast multi-dimensional space of living lies the ethnographic task that for the last fourteen years Veena Das’ band of researchers has pursued in the hopes of producing anthropological evidence of another kind, “of the kind that could be used for serious advocacy on sanitation, health care, or everyday violence.”

Advocacy is troubled and troubling terrain. In cases of cancer clusters, citizens often were told that they were incompetent to distinguish coincidence and statistical significance, meaning, in environments of sequestered information, as are so many of our corporatized and legally defended environments from Bhopal to Woburn, Love Canal to Fukushima, in such environments citizen science had to learn to gather epidemiological knowledge that would stand up in court and survive cross-examination. In the case of U.S. Superfund legislation passed in 1980, citizen action panels were given money to hire independent experts. In the aftermath of Bhopal, Right to Know legislation was passed in the U.S., and later in India. In terrains of proprietary knowledge, government statistics not made public, and other forms of sequestering knowledge, especially in worlds of metrics and audits that stand in for, and constitute, legally defensible knowledge, experiential knowledge of the sort anthropological tools reveal often have a hard time.

There are at least two critical and effective tools however that anthropology wields: (a) exposing to the light the ways in which bureaucratized statistics and models lie, hide reality, are made up, or are tissues of unrealistic extrapolations. Veena treads carefully in this terrain, referring occasionally to celebrity projects like MIT’s Poverty Action Lab, proposing her own Standardized Patient methodology (to which I will return) as a way, a metric even: visits to 305 practitioners (926 visits), for three common diseases, presented by 22 simulated standardized patients; a weekly morbidity survey of 300 households (with 1,620 individuals participating. and a refusal rate of less than 1%), done weekly for 17-18 weeks, then monthly; detailed interviews with at least one and ideally all members of each household; a full day spent in each of 291 practitioners’ clinics. This was done not just to expose poor quality medicine, but also positively as a pedagogy (teaching how to articulate disease diagnostic symptoms in vernacularly recognized ways). (b) The second anthropological tool is powerfully staging the living realities of life. Anthropology often operates like the theater: putting characters and plots on stage that illustrate competing interests, affects, emotions, idioms, strategic ploys, conflicts, and temporary tragedies and resolutions.   Veena does this skillfully, and, as she warns, not for its sentimental persuasive value, not just cultivating unmediated sympathy or empathy – she repeats this several times – but in pursuit of calling the community, politicians, policy-makers, experts alike from everyday trance-like forgetfulness into awareness. The challenge she notes a number of times following Emmanuel Levinas, (or Stanley Cavell’s reading of Levinas), that the problem is rarely just attending to the face of the other, but in a world of competing obligations to the living, the dead and the dying, learning how to suffer separation from the other, limiting the desire for infinite responsibility, allowing a person, an attachment to life, space to breathe.   At times, as in the case of Bilu who blames himself for not being able to gather the resources for his brother’s kidney transplant in time, a possibility that would have suffocated his own life and that of his new son with debts and on-going demands for immuno-suppressants and other life supports, this is a story of individuation, but at other times it is a cycling through one’s contesting (almost Kantian) faculties of (i) the courtroom (the accusatory voices of obligations one is unable to fulfill); (ii) the artisanal workshop (the cultivation and care of the self in traditionally given virtues); and (iii) the laboratory (the experimental innovation of new plotlines for one’s own life and one’s consociates).   Here is Ordinary Ethics, but of the most profound sort, scenes of instruction that should make the distanced policy-maker see anew, differently, come out of the trance of rules, excuses, and impossibilites for helping those in need.

(2) Ethics. Among the virtues of India amidst the poverty, conflicts, and crowding is its vitality as a land of philosophy, not just in its ancient civilizational roots in conversation with the Greeks and Chinese, but in contemporary life, affording a diversity of “scenes” of profound “ordinary ethics” in engagements with illness, access, quality of care, the technological, and the psycho-spiritual webs of relational socialities. Das’ text is structured roughly like Wittgenstein’s Philosophical Investigations, moving through “scenes of instruction” are arranged in pairs and triads of increasing complexity, not unlike Laura Bohanan’s classic and ingeniously structured Return to Laughter.

The theaters of ordinary ethics are modern, contemporary productions, staged within the folds and social stressors of urban renewal-removal after communal riots, structural violence of rural-urban migrants living with low-income and education, unattended-to illnesses and family tensions, dispensaries that give out Tetracycline no matter what your illness because that’s all they have been supplied with this month. The theaters of ordinary ethics are both performative (acting out, fusing together visceral-emotional and cognitive-moral poles of understanding) and enchanted with modernity’s extravagant promises, for instance of commodities for which one only can manage the down-payment but then must sell or have repossessed; and of capacities for which one struggles, only to get beginners’ incomplete schooling. Sometimes these promises are fulfilled enough to keep hopes and fantasies alive. Sometimes they are fulfilled only enough to generate dreams, visions, ghosts, jinn, bhot and pretu, generated — as the double-binds of Bilu’s life dramatize — by what Veena calls “the pressure on thought.” These pressures on thought are “something other than rational argumentation, not simply emotion or empathy, but wakefulness,” a state Bilu reaches in terms of his duty to his son.

It is a beautiful case or scene of instruction, a case of choices between circles of obligation expanding infinitely in Bilu’s quest to make a kidney transplantation for his brother possible versus circles of obligation narrowed instead by saturating his immediate surroundings with care and love that make it livable. He is able to achieve this narrowed focus, only with great pain and continuing “post traumatic stress,” through the woman in white who comes in dreams or visions to call him first to his responsibility to care for his village (widening his circles of obligation), but then later (narrowing them) only to his new born son. She has granted his devotional prayers for a new son after the loss of an earlier one, but on condition of his absolute devotion to that gift. The pressures of interpreting visions, dread, panic, full of dilemmas of error, misinterpretations, false leads, satanic confusions, visions expressing dark drives – these all are part of the dramatic tension of the enchanted theaters of ordinary life, of the pressures of thought, the social stressors of impossible double-binds and obligations.

(3) Contradictions and Ambi-valences. Amidst the desire for “a theology of suffering,” with terms such as “soul”, and a troubling anti-consequentialist Bhagvad Gita maxim (“you have authority only over your action, never over the consequences”, which Veena reads in a comforting Levinasian mode of limiting infinite responsibilities, but which sounds uncomfortably close to the warrior Krishna’s self-justification in war or the urgency used in self-justification of humanitarian aid industries for pushing aside local capacity building), Veena’s text registers “emotional and intellectual frictions,” cycling through internal voices of the accusatory other, invocations of traditional virtues, and demands for innovation attuned to present needs. Irresolvabilities structure these scenes of ordinary ethics: (i) limiting the desire for infinite responsibility; (ii) finding quality care, not just access to care; (iii) acknowledging voices this side of mental illness (“My problem is not that I am ill”; “But Aunty, I was not the one who was ill.”) ‘Hard to tell what is Shaytanic confusion’ in worlds where things are not always as they seem (dunya nadeedani).

Indeed it is a truth of parables in many traditions (Fischer 1990:110; Jain parables; and Musa-Khizr stories in Islam) that things are not always as they seem. This is a truth, as well, of psychoanalysis and counseling, of medical practitioners who attend to the corporeal demands of hope and spiritual distress (Hyun 2013), of the unseen world in its many dimensions.

Veena deals with these in a series of “scenes of instruction” built around nine main figures. The opening two scenes are of failures of quality of care, each complicated by a structural aporia of imposed not knowing. The next three are further complicated by family dynamics. This is intensified in the sixth and seventh of classic family systems dynamics in which a child is designated to be the problematic figure of failure or distress, but of course without knowing if there is also a genetic or physiological cause. The last and most elaborate is of the play of forces – psychic, social, political, economic, seen and unseen causes and influences – that make interpretation dangerous, and like the philosophical pharmakon, potentially poisonous rather than healing.

The first scene of instruction is a story of a four year old child who died from a fall and head injury but was misdiagnosed in hospital with an X-ray, and only correctly diagnosed with a CT scan too late to do anything. A technician had told the parents a CT scan was needed, but the doctor in the first hospital responded to them, “are you the doctor or am I?” It is a story used first to draw attention to how the poor are treated in hospitals, but also then to raise the question about the different idioms in which husbands and wives express emotion after “cumulative adverse reproductive events (miscarriages, abortions, still births, child deaths).”

In the second story, Ballo, who complains of stomach ache, weakness, lack of appetite and a heart condition or perhaps tuberculosis (dil ke bimari, ya shayad TB), gets medicines intermittently whenever her son would go to the chemist and present old prescriptions for viral hepatitis, liver function, or TB. Bad enough the old prescriptions, the lack of contact with a doctor, the intermittency of taking courses of drugs; but underlying all, says Veena, was the demand of the sixty year old woman for more attention from her son and his wife. She would periodically return from town to visit her daughter’s village to display displeasure at her son.

The third scene of instruction becomes more complicated. Prakash is a periodically hallucination-suffering, shivering old man who refuses to wear even a newly purchased sweater because he can smell a Muslim in it. His hallucinations, for which he was hospitalized already once forty years ago, obsessively repeat an abduction by Allah, during the grip of which Prakash speaks in a high feminized voice, claiming love of Allah and fatal attraction for Islam, from which he is saved by Shiva. Like Shiva, he can become violent. Released from the hospital he lives with the widow of his younger brother and her now adult son. This arrangement is imposed upon the widow by her biradari (kin group) who insist she have a male guardian in the house, never mind mentally impaired. She manages him with lithium and sleeping pills. Life in this scene is complicated by family and hallucinations.

In a fourth scene of instruction, Meena dies of TB after having successfully completed several courses of TB-DOTS treatment, each time being declared cured. A relative gets her admitted to a hospital as a dependent, and another helps her get into a treatment center under a false name to avoid regulations against going to treatment clinics beyond one’s local zone. A physician told Veena, there was no point testing for multi-drug resistant TB since they could not treat that. Meena died after much seeking of care, leaving her family saddled with debts, and having negotiated much anxiety that her husband would leave her for a woman he was having an affair with. There was no way to know if she was repeatedly re-infected because of compromised immunity, environmental factors, concomitant HIV infection, or whether she was infected by an acquired or transmitted drug resistant strain. Meanwhile the records of each DOTS center classified her as cured case, and all together she counts in the official statistics as multiple cured cases.

The fifth scene of instruction involves children covering up for their patents. Meena’s son Mukesh, an 8-12 year old during the fieldwork, covers for the dysfunctional relation of his parents, his mother’s descent into illness, her fear of being sent away, and her refusal of her medications when angry with her husband. His story is paired with that of a young girl who tells the police that her mother’s death by kerosene was an accident, and is praised in the neighborhood for the “correct response”. Meena before her death tried to support Mukesh’s education, with the help also of Veena, but after Meena’s death the new stepmother, whom the father gives the first wife’s name, is not so supportive.   Still, when Veena meets Mukesh again a few years later, his smattering of English has gained him a job, a watch, and a practice of attending church, where he finds a sense of peace unlike, he says, the jostling in a Hindu temple).

A sixth scene of instruction is that a brother and sister with different life outcomes. Swapan [“Dream”], a twenty-year old migrant from Multan, a Dalit (or untouchable), who suffers an unsupportive family environment, in which his sister succeeds at education, while he fails. He is undermined by his mother and becomes designated as the problem child. He says to Veena, “My problem is not that I am mad. My problem is that no one takes interest in me.”   But while he has moments of lucidity like this, he also, less strong than his sister Vayda, really is driven to the verge of madness, having bouts of rage, acting out, defecating on the floor, beating his mother, and eventually after a stay in a psychiatric hospital, trying to master the world by memorizing the English dictionary, a key he thinks to power. Experiencing “illusory qualities of modernity” always out of reach, He stumbles through life “as if made into a ghost.” This scene of instruction, of a splitting of the mother into good and bad mothers sounds Kleinian or Bion(ian) or Kali-like, and offers a possible opening to building upon the psychoanalytic accounts of mental illness in South Asia pioneered by Gananath Obeysekere, Alex Roland, and others. Abandonment in these stories is not so much an act of the will resulting from choice, but rather an exhaustion of the will and the capacity to marshal yet more energy. Swapan’s mother says her son has remade his own mother into a demonic being who could wish death upon the son she had borne. Here actors are not transparent to themselves, and the pursuit of the moral within such scenes of trancelike everyday ordinary ethics is analogous to being called to awaken from forgetfulness.

Vidya [“Knowledge”], by contrast, is quite aware of her family systems role as the overly bright girl under such close supervision that, were she less strong, would make her ill like her brother Swapan. Subbornly insisting on studying against internal family pressures, she becomes withdrawn and is taken for psychiatric treatment. Vidya says to Veena, “But Aunty, I was not the one who was ill – it is my Father who needs treatment . . . my Father has created such a situation that every one was watching me all the.” And she succeeded, if not all the way to college, still to a clerical job and steady income.

The most elaborate scene of instruction is that of the Muslim healer, Hafiz Mian, with whom Veena shares her own dream of dread, of being on a train helping protect an Indian nationalist terrorist disguised as a Sikh who is being tracked down by British soldiers on the train. The psychological “I” of the dream is a young woman, who Veena says doesn’t really physically look like her, whose job it is to distract the soldiers. The dread would seem to be easily explained, to this observer, as a reflection of Veena’s work with Sikh and other victims of the riots after Indira Gandhi’s assassination, and her continued work in low-income neighborhoods suffering further structural violence. In her story, however, Veena claims to be “bewildered” by the dream. Hafiz Mian cautions her that she should not tell dreams to just anyone because they could have dangerous effects, transforming what is latent and hidden into manifest realit, and he significantly asks if in the dream she had seen the revolutionary or the British soldiers, and she realizes she had not. Dreams, he says, are only partly about images, what you see, but primarily about what you sense, dread in this case, and dream interpretation is always subject to misrecognition, and to be mislead by shaitan. The term shaitan, of course, has different registers. It too often is translated by what in Christian imagery is called Satan, a fallen angel and figure of intentional evil, like the Zoroastrian Ahriman. But shaitan is also used of mischievous little boys, a jokstering misdirection, not necessarily evil. In dream interpretation, therefore, it can be various forms of error, of misrecognition, of false cues or leads. And so, Veena’s anxiety about misrepresenting the vujud, the essence, the real truth, of the people she only comes to know partially through ethnographic fieldwork, is a burden that Hafiz Mian also lays out as the burden of a healer who is always dealing with the hidden, that shadows the manifest: the unspoken desires and motivations unknown even to the afflicted themselves.”

Conclusions. The anthropological advice/advocacy in theaters of ordinary ethics under conditions of contradiction and ambivalence are perhaps like risk scenarios used to prepare community workers and outside aid workers for many and often changing situations. But more powerfully, they also call for real investment in education and local economies, maybe even in local shrines where hope and spiritual distress are mediated, perhaps a Dalit Peace Corps with Fab Labs and entrepreneurial incubators, putting tools in community hands, for self-repair rather than for fantasies of being saved by knowing outsiders. It is a prescription for a “necessary theater” (I take the name from an important local theater group in Singapore) that no doubt will come with much pushback and conflict of interests invested in reserve labor pools, cheap wages, unorganized and sequestered knowledge. Veena Das’ book, Affliction: Health, Disease, Poverty provides an important, ethnographically powerful, laddering of scenes of instruction for us all.

 

Michael M.J. Fischer is Andrew W. Mellon Professor in the Humanities and Professor of Anthropology and Science and Technology Studies at MIT, and Lecturer in the Department of Global Health and Social Medicine at the Harvard Medical School.  He is a co-editor with Byron Good, Sarah Willen, and Mary-Jo DelVecchio Good of A Reader in Medical Anthropology: Theoretical Trajectories, Emergent Realities (2010); and author of Anthropological Futures (2009), Emergent Forms of Life and the Anthropological Voice (2003); (with George Marcus) Anthropological as Cultural Critique (1986, 2nd ed 1999); Mute Dreams, Blind Owls, and Dispersed Knowledges: Persian Poesis in the Transnational Circuitry (2004); (with Mehdi Abedi) Debating Muslims: Cultural Dialogues between Tradition and Modernity (1990); and Iran: From Religious Dispute to Revolution (1980).  He is currently in Singapore doing fieldwork on Biopolis and the life sciences, the aging society, global university reform, and the arts.

References cited

Das, Veena. 2014. Affliction.   New York: Fordham University Press.

Das, Veena. 2013. “Ordinary Ethics.” in Didier Fassin, ed., A Companion to Moral Anthropology.   New York: Wiley-Blackwell.

Fischer, Michael M.J. 1990. Debating Muslims: Cultural Dialogues in Postmodernity and Tradition.   Madison: Univeristy of Wisconsin Press.

Hyun, Insoo. 2013. “Therapeutic Hope, Spiritual Distress, and the Problem of Stem Cell Tourism. Cell Stem Cell, 12 (May 2): 506-507.

[1] Orally presented at the American Anthropological Association meetings in Washington D.C., 4 December, 2014, as part of a panel, “Affliction: a discussion with Veena Das,” organized by Clara Han with Veena Das as respondant.

In the Journals January 2015 – Part I by Melanie Boeckmann

12 février 2015 - 7:05pm

Welcome to 2015 in reading! Below are interesting abstracts from current issues of medical anthropology journals.

Critical Public Health

The pedagogy of disgust: the ethical, moral and political implications of using disgust in public health campaigns

Deborah Lupton

The developers of public health campaigns have often attempted to elicit disgust to persuade members of their target audiences to change their behaviour in the interests of their health. In this critical essay, I seek to problematise this taken-for-granted and unquestioned tactic. I assert that the pedagogy of disgust in public health campaigns has significant ethical, moral and political implications. In outlining my argument, the literature on the social, cultural and political elements of disgust is drawn upon. I also draw more specifically on scholarship demonstrating the ways in which disgust has operated in relation to health and medical issues to reinforce stigmatisation and discrimination against individuals and groups who are positioned as disgusting. It is concluded that advocates of using such tactics should be aware of the challenge they pose to human dignity and their perpetuation of the Self and Other binary opposition that reinforces negative attitudes towards already disadvantaged and marginalised individuals and social groups.

 

You can’t walk or bike yourself out of the health effects of poverty: active school transport, child obesity, and blind spots in the public health literature

Claudia Chaufan, Jarmin Yeh, Leslie Ross and Patrick Fox

Mainstream public health theories of obesity attribute current, unprecedented numbers of obese youth to changes in eating practices and levels of physical activity, in turn leading to greater energy consumption and lesser energy expenditure. While substantial research has examined energy consumption among school-age children, key modes of energy expenditure such as active school transport (AST) remain underexplored. Using AST data obtained from the California Safe Routes to Schools program and child health data from the California Physical Fitness Test, we examined the association between AST and child obesity among school-age children and disambiguated this relationship introducing the variable poverty. We found that greater AST correlated with higher rates of child obesity and higher rates of child poverty, which in turn correlated with worse child health and obesity rates. Our findings suggest that child poverty explains the positive relationship between AST and child obesity that has puzzled investigators. Our analysis also reveals recurring blind spots in the public health literature, which often acknowledges that poverty begets poor health yet calls for environmental changes while rarely calling for eliminating poverty, one critical social determinant of health, even as these determinants have become legitimate objects of scientific inquiry. We propose that while environmental changes may improve the health of the poor, the only effective way to improve child health and reduce child obesity is to eliminate or dramatically reduce child poverty, a sociopolitical issue. This study is part of a larger project evaluating socio-political determinants of child health.

 

‘It puts life in us and we feel big’: shifts in the local health care system during the introduction of rapid diagnostic tests for malaria into drug shops in Uganda

Eleanor Hutchinson, Clare Chandler, Siân Clarke, Sham Lal, Pascal Magnussen, Miriam Kayendeke, Christine Nabirye, James Kizito and Anthony Mbonye

This paper is an analysis of the social interaction between drug sellers, their clients and local health care workers within a medical trial that introduced rapid diagnostic tests for malaria into private sector drug shops in Mukono District, Uganda. It locates the introduction of a new technology to test blood and a system of referral within the context of local concerns about the choice and evaluation of treatment; and the socially legitimated statuses, roles and hierarchies within the local health care system. Based on the multi-layered interpretation of 21 focus group discussions, we describe three key aspects of the trial central to local interpretation: openly testing blood, supervisory visits to drug shops and a new referral form. Each had the potential to shift drug shop vendors from outsider to insider of the formal health service. The responses of the different groups of participants reflect their situation within the health care system. The clients and patients welcomed the local availability of new diagnostic technology and the apparent involvement of the government in securing good quality health services for them from providers with often uncertain credentials. The drug shop vendors welcomed the authorization to openly test blood, enabling the demonstration of a new skill and newfound legitimacy as a health worker rather than simple drug seller. Formal sector health workers were less enthusiastic about the trial, raising concerns about professional hierarchies and the maintenance of a boundary around the formal health service to ensure the exclusion of those they considered untrained, unprofessional and untrustworthy personnel.

 

Biopedagogy digitalized: ‘educational’ relations among participants on an online weight loss surgery forum

Matthew D. Ferrya and Centáe Richards

Foucault uses the term ‘biopower’ to describe the totalizing effects of regulation of life through the manipulation of political messages, such as those in the obesity debate. This paper attempts to uncover ways in which these flows are made manifest among members of a public online weight loss surgery (WLS) discussion forum. Drawing from Foucauldian scholarship, we spent two-and-a-half years conducting a critical discourse analysis of over 2000 conversational threads on one US-based public discussion forum devoted to providing a support community to those who were considering WLS. Our intent is to analyze how ‘truths’ about the surgery are constructed among and between the community participants at different stages of the surgery to identify how they engage with ideologies associated with contemporary obesity and healthism.

 

‘Sex’ – it’s not only women’s work: a case for refocusing on the functional role that sex plays in work for both women and men

Elanah Uretsky

Mention of the term sex work often invokes images of marginalized women at risk for HIV infection. Such images, however, are counterintuitive to the functional role intended by the movement that spawned use of the terms ‘sex work’ and ‘sex worker.’ This article looks at the sexual practices of men in urban China to argue for a return to a functional definition of ‘sex work’, which was originally meant to legitimize the role sex plays in work. The progenitors of this movement intended to use ‘sex work’ as a means to legitimize sex as an income-generating activity for women involved in prostitution. I show that sex can also serve a functional role in the work-related duties of men seeking economic and political success in contemporary urban China. Men in China utilize sex as one way for demonstrating the loyalty necessary to access state-owned and controlled resources in a market economy governed under a Leninist system. Overall, the article demonstrates that reclaiming perception of sex work as a functional rather than behavioral category can expand its use for preventing HIV among the broad subset of people who engage in sex as part of their work.

 

Leaving the stethoscope behind: public health doctors and identity work

Lee Thompson

Public health medicine is distinct in two ways from most other forms of medical specialisation; firstly, it is predominantly non-clinical and secondly, its concern is with populations, rather than the more common individual physician–patient encounter. In spite of recent attempts to ‘mainstream’ public health approaches into medical training and practice, it remains a relatively low prestige medical specialty. In the face of the centrality of all things clinical in medical training, the identity work needed to think beyond this and into population health approaches is significant. In the face of public health physicians’ subaltern position within medicine, this research investigates the identity work doctors did as they made the transition into public health medicine and how they understood their positioning once they were within the specialty. The inductive thematic analysis conducted on the qualitative interview data generated for this research elicited three key themes of relevance for the 19 public health physicians in New Zealand who were interviewed. The calling into question of biomedical identities was evident and concomitant with this was a sense of loss of the satisfactions of clinical medicine including contact with patients and the ability to solve discrete clinical problems. The final theme revolved around how public health physician identities were felt by the participants to be discredited. Lack of attention to the identity work required to think beyond the individual in health terms may contribute to a slow pace of change.

 

‘You don’t ditch your girls’: young Māori and Pacific women and the culture of intoxication

Fiona Hutton and Sarah Wright

Māori and Pacific Peoples experience a disproportionate burden of alcohol-related harm relative to other ethnic groups, yet little is known about the context in which this drinking occurs. Few studies have explored how and why young Māori and Pacific women drink. Therefore, this article aims to develop a more nuanced and detailed account of Māori and Pacific young women’s drinking practices. The following article reports on an ethnographic study of young Māori and Pacific women aged 18–30. Five Māori participants and six Pacific participants were selected and asked to become researchers within their social groups. Nine female researchers also became participants in the study, accompanying recruited participants to drinking occasions and events. Participants were each given a ‘drinking diary’ to document drinking occasions, which formed the data-set for the project. Three levels of thematic analysis were undertaken. The first noted broad themes with the second and third levels exploring more nuanced themes and identifying intersections across themes. The study demonstrated that Māori and Pacific young women’s engagement with New Zealand’s culture of intoxication is complex: Māori and Pacific women drink for pleasure or to achieve a ‘buzz’ and to be social. Drinking practices are deeply affected by ethnic and peer group collectives (‘the girls’), traditions and expectations. Harm reduction initiatives need to take account of the many pathways specific to how Māori and Pacific young women engage with alcohol use. Additionally, the wider context in which alcohol-related harm occurs needs to be considered in policy and harm reduction debates.

 

Health

The development of the specialism of emergency medicine: Media and cultural influences

Stephen Timmons and Stuart Nairn

In this article we analyse, via a critical review of the literature, the development of a relatively new medical specialism in the United Kingdom, that of emergency medicine. Despite the high media profile of emergency care, it is a low-status specialism within UK medicine. The creation of a specialist College in 2008 means that, symbolically, recognition as a full specialism has now been achieved. In this article, we will show, using a sociology of professions approach, how emergency medicine defined itself as a specialism, and sought to carve out a distinctive jurisdiction. While, in the context of the UK National Health Service, the state was clearly an important factor in the development of this profession, we wish to develop the analysis further than is usual in the sociology of professions. We will analyse the wider cultural context for the development of this specialism, which has benefited from its high profile in the media, through both fictional and documentary sources.

 

The social negotiation of fitness for work: Tensions in doctor–patient relationships over medical certification of chronic pain

Elaine Wainwright, David Wainwright, Edmund Keogh and Christopher Eccleston

The UK government is promoting the health benefits of work, in order to change doctors’ and patients’ behaviour and reduce sickness absence. The rationale is that many people ‘off sick’ would have better outcomes by staying at work; but reducing the costs of health care and benefits is also an imperative. Replacement of the ‘sick note’ with the ‘fit note’ and a national educational programme are intended to reduce sickness-certification rates, but how will these initiatives impact on doctor–patient relationships and the existing tension between the doctor as patient advocate and gate-keeper to services and benefits? This tension is particularly acute for problems like chronic pain where diagnosis, prognosis and work capacity can be unclear. We interviewed 13 doctors and 30 chronic pain patients about their experiences of negotiating medical certification for work absence and their views of the new policies. Our findings highlight the limitations of naïve rationalist approaches to judgements of work absence and fitness for work for people with chronic pain. Moral, socio-cultural and practical factors are invoked by doctors and patients to contest decisions, and although both groups support the fit note’s focus on capacity, they doubt it will overcome tensions in the consultation. Doctors value tacit skills of persuasion and negotiation that can change how patients conceptualise their illness and respond to it. Policy-makers increasingly recognise the role of this tacit knowledge and we conclude that sick-listing can be improved by further developing these skills and acknowledging the structural context within which protagonists negotiate sick-listing.

 

Performing ‘pragmatic holism’: Professionalisation and the holistic discourse of non-medically qualified acupuncturists and homeopaths in the United Kingdom

Assaf Givati

Complementary and alternative medicine practitioners have often utilised ‘holism’ as a key identification mark of their practice, distancing themselves from ‘the reductionist biomedicine’. However, the past couple of decades have witnessed increased engagement of several complementary and alternative medicines in professionalisation, which includes a degree of biomedical alignment while ‘reducing’ holistic claims in order to provide practice with a ‘credible outlook’ and move closer to the mainstream, a development which challenges the role of holism in complementary and alternative medicine practices. This article explores the strategies by which two groups of complementary and alternative medicine practitioners, namely, non-medically qualified acupuncturists and homeopaths in the United Kingdom, pragmatically accommodateholistic notions as a professional resource, a process of negotiation between maintaining their holistic premise, on the one hand, and the drive to professionalise and enhance their societal status, on the other. Based on in-depth interviews with non-medically qualified acupuncture and homeopathy practitioners and school principals, textual analysis of practitioners’ web sites and observation of practice, the findings demonstrate the dynamic approach to ‘holism’ in complementary and alternative medicine practice. This discourse, through which practitioners use a range of strategies in order to ‘narrow’ or ‘expand’ their holistic expression, can be described as ‘pragmatic holism’, by which they try to make gains from the formalisation/standardisation processes, without losing the therapies’ holistic outlook and appeal.

 

Counterpublic health and the design of drug services for methamphetamine consumers in Melbourne

Cameron Duff and David Moore

This article is interested in how notions of the ‘public’ are conceived, marshalled and enacted in drug-treatment responses to methamphetamine use in Melbourne, Australia. After reviewing qualitative data collected among health-care providers and methamphetamine consumers, we draw on the work of Michael Warner to argue that services for methamphetamine consumers in Melbourne betray ongoing tensions between ‘public’ and ‘counterpublic’ constituencies. Our analysis indicates that these tensions manifest in two ways: in the management of ‘street business’ in the delivery of services and in negotiating the meaning of health and the terms of its restoration or promotion. Reflecting these tensions, while the design of services for methamphetamine consumers is largely modelled on public health principles, the everyday experience of these services may be more accurately characterised in terms of what Kane Race has called ‘counterpublic health’. Extending Race’s analysis, we conclude that more explicit focus on the idea of counterpublic health may help local services engage with methamphetamine consumers in new ways, providing grounds for novel outreach, harm-reduction and treatment strategies.

 

Impact of age at onset for children with renal failure on education and employment transitions

Helen Lewis and Sara Arber

Previous medical research has shown that children with end-stage renal failure experience delay or underachievement of key markers of transition to adulthood. This article analyses 35 qualitative interviews with end-stage renal failure patients, aged 20–30 years, first diagnosed at 0–19 years of age, to explore how far delayed or underachievement in education and employment is related to their age at onset of end-stage renal failure. This study shows how unpredictable failures of renal replacement therapies, comorbidities and/or side effects of treatment in the early life course often coincided with critical moments for education and employment. Entering school, college, work-related training or employment, and disclosing health status or educational underachievement to an employer, were particularly critical, and those who were ill before puberty became progressively more disadvantaged in terms of successful transition into full-time employment, compared with those first diagnosed after puberty.

 

The effect of strategies of personal resilience on depression recovery in an Australian cohort: A mixed methods study

Frances E Griffiths, Felicity K Boardman, Patty Chondros, Christopher F Dowrick, Konstancja Densley, Kelsey L Hegarty and Jane Gunn

Strategies of personal resilience enable successful adaptation in adversity. Among patients experiencing depression symptoms, we explored which personal resilience strategies they find most helpful and tested the hypothesis that use of these strategies improves depression recovery. We used interview and survey data from the Diagnosis, Management and Outcomes of Depression in Primary Care 2005 cohort of patients experiencing depression symptoms in Victoria, Australia. A total of 564 participants answered a computer-assisted telephone interview question at 12 months follow-up, about what they found most helpful for their depression, stress or worries. Depressive disorder and severity were measured at annual follow-up using the Composite International Diagnostic Interview and the Patient Health Questionnaire self-rating questionnaire. Using interview responses, we categorised participants as users or not of strategies of personal resilience, specifically, drawing primarily on expanding their own inner resources or pre-existing relationships: 316 (56%) were categorised as primarily users of personal resilience strategies. Of these, 193 (61%) reported expanding inner resources, 79 (25%) drawing on relationships and 44 (14%) reported both. There was no association between drawing on relationships and depression outcome. There was evidence supporting an association between expanding inner resources and depression outcome: 25 per cent of users having major depressive disorder 1 year later compared to 38 per cent of non-users (adjusted odds ratio: 0.59, confidence interval: 0.36–0.97). This is the first study to show improved outcome for depression for those who identify as most helpful the use of personal resilience strategies. The difference in outcome is important as expanding inner resources includes a range of low intensity, yet commonly available strategies.

 

Health and Place

Community influences on contraceptive use in Mozambique

Boaventura Manuel Cau

Fertility in sub-Saharan Africa remains the highest in the world. Yet, the average contraceptive prevalence in Africa is the lowest in major world regions and there is limited understanding of the mechanisms through which community context shapes contraceptive use in the region. Using data from the 2011 Mozambique Demographic and Health Survey, we examine the mechanisms through which community context influences women’s use of modern methods of contraception in Mozambique. We find that community context influences the use of modern methods of contraception by shaping the environment in which women live.

 

Alcohol outlet density and related use in an urban Black population in Philadelphia public housing communities

Julie A. Cederbaum, Robin Petering, M. Katherine Hutchinson, Amy S. He, John P. Wilson, John B. Jemmott III and Loretta Sweet Jemmott

Adolescent alcohol use behaviors are influenced by familial patterns and neighborhood factors. This work explored the influence of individual, family, and environment on alcohol use. Baseline data from a randomized controlled trial with Black mothers son dyads (n=382) were paired with census tract and alcohol control board data. Among mothers, younger age, along with neighborhood factors of alcohol outlet density, race, and education were significantly associated with use. Among sons, older age and alcohol outlet density in the neighborhood predicted use. Findings highlight neighborhood influence, beyond family qualities, as a significant determinant of disadvantaged Black mothers’ alcohol use. Implications for public health policy are discussed.

 

The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study

Gemma Heath, Sheila Greenfield and Sabi Redwood

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld.

 

Re-thinking children׳s agency in extreme hardship: Zimbabwean children׳s draw-and-write about their HIV-affected peers

Catherine Campbell, Louise Andersen, Alice Mutsikiwa, Claudius Madanhire, Morten Skovdal, Constance Nyamukapa and Simon Gregson

We compare two analyses of the same ‘draw-and-write’ exercises in which 128 Zimbabwean children represented their HIV-affected peers. The first, informed by the ‘New Social Studies of Childhood’, easily identified examples of independent reflection and action by children. The second, informed by Sen׳s understandings of agency, drew attention to the negative consequences of many of the choices available to children, and the contextual limits on outcomes children themselves would value: the support of caring adults, adequate food, and opportunities to advance their health and safety. Conceptualisations of agency need to take greater account of children׳s own accounts of outcomes they value, rather than identifying agency in any form of independent reflection and action per se.

 

Conceptualizations of pluralistic medical fields: exploring the therapeutic landscapes of Nepal

Rikke Stamp Thorsen

Using the concept of ‘therapeutic landscapes’ this study explores how people in Nepal conceptualize their health care opportunities and how health care seeking practices are interpreted and experienced differently among people in their everyday contexts. Relational therapeutic landscapes were experienced through notions related to time and place as treatments were positioned along spectrums ranging from home to city and past to present. Conceptualizations of treatments were influenced by accessibility, lack of knowledge and uncertainties related to getting diagnosis as well as structural constraints beyond the health care system.

 

Putting the party down on paper: A novel method for mapping youth drug use in private settings

Signe Ravna and Cameron Duff

This article proposes a novel method for generating context-rich knowledge about ‘hard-to-access’ places. We ground our discussion in a recent qualitative study of social settings of youth drug use in Denmark. The study confirmed that private house parties are common sites of youth drug use, although these parties presented limited opportunities for fieldwork. In response, a ‘map-task’ was introduced to the study to complement fieldwork and interviews. We assess the most significant methodological and epistemological features of this map-task, and explore how it may to used to conduct observations ‘from a distance’ in hard-to-access places. Further, we argue that the map-task has a number of analytical and logistical advantages for scholars interested in the health and social aspects of ‘hidden’ phenomena, such as youth drug use.

 

Dreaming of toilets: Using photovoice to explore knowledge, attitudes and practices around water–health linkages in rural Kenya

Elijah Bisung, Susan J. Elliott, Bernard Abudho, Corinne J. Schuster-Wallace  and Diana M. Karanja

As part of a knowledge, attitudes, practices and empowerment (KAPE) project implemented by the United Nations University Institute for Water, Environment and Health (UNU-INWEH) in the Lake Victoria Basin, this paper reports findings from a photovoice study with women in Usoma, a lakeshore community in Western Kenya. Drawing on ecosocial and political ecology theory, findings reveal that access to water, perceptions and practices were shaped by ecological and broader structural factors. Further, collective actions to improve access were constrained by institutional and economic structures, thus (re)enforcing inequalities.

 

International Journal of Social Psychiatry

Hearing their voices: The lived experience of recovery from first-episode psychosis in schizophrenia in South Africa

Anneliese de Wet, Leslie Swartz and Bonginkosi Chiliza

Background: Recovery was previously regarded as a somewhat unattainable goal, and the subjective experience was de-emphasised. Lately, the person and his or her experiences are emphasised.

Material: Seven participants were interviewed regarding their experience of recovery from first-episode psychosis in schizophrenia. Data were analysed using interpretative phenomenological analysis (IPA).

Discussion: Support and having to care for another are possibly the greatest contributors to their recovery. Spirituality plays an important role. Stigma, found to be ingrained and pervasive, could be a barrier to recovery. The rediscovery by the participants of their abilities (re)introduced a sense of agency.

Conclusion: The narrative in the process of recovery is crucial.

 

War traumas in the Mediterranean area

Mauro Giovanni Carta, Maria Francesca Moro and Judith Bass

Introduction: The purpose is to explore the consequences of war and its impact on mental health with attention to the Mediterranean area.

Methods: Narrative review of consequences of war on mental health and on the mental health of the communities in the current crises in the Mediterranean region.

Results: A series of outbreaks of war are still raging in the Mediterranean region and producing horrible effects with a considerable number of refugees with unsatisfied needs. Studies relating to conflicts of the past suggest that the mental health consequences of these wars may affect future generations for many years. While violations of human rights are not new, what is new are attacks on medical institutions perceived to be traditionally Western.

Conclusion: The scientific community has to fight violence through mediation of conflicts. The idea that science can improve lives is a concept that is found in the history of all Mediterranean cultures. The Greek and Roman medical tradition was saved thanks to doctors of the Arab courts when Christian fundamentalism fought science in the Middle Ages. Health institutions are the product of the great Islamic medical tradition as well as Western culture.

 

Identification of the hikikomori syndrome of social withdrawal: Psychosocial features and treatment preferences in four countries

Alan R Teo, Michael D Fetters, Kyle Stufflebam, Masaru Tateno, Yatan Balhara, Tae Young Choi, Shigenobu Kanba, Carol A Mathews and Takahiro A Kato

Background: Hikikomori, a form of social withdrawal first reported in Japan, may exist globally but cross-national studies of cases of hikikomori are lacking.

Aims: To identify individuals with hikikomori in multiple countries and describe features of the condition.

Method: Participants were recruited from sites in India, Japan, Korea and the United States. Hikikomori was defined as a 6-month or longer period of spending almost all time at home and avoiding social situations and social relationships, associated with significant distress/impairment. Additional measures included the University of California, Los Angeles (UCLA) Loneliness Scale, Lubben Social Network Scale (LSNS-6), Sheehan Disability Scale (SDS) and modified Cornell Treatment Preferences Index.

Results: A total of 36 participants with hikikomori were identified, with cases detected in all four countries. These individuals had high levels of loneliness (UCLA Loneliness Scale M = 55.4, SD = 10.5), limited social networks (LSNS-6 M = 9.7, SD = 5.5) and moderate functional impairment (SDS M = 16.5, SD = 7.9). Of them 28 (78%) desired treatment for their social withdrawal, with a significantly higher preference for psychotherapy over pharmacotherapy, in-person over telepsychiatry treatment and mental health specialists over primary care providers. Across countries, participants with hikikomori had similar generally treatment preferences and psychosocial features.

Conclusion: Hikikomori exists cross-nationally and can be assessed with a standardized assessment tool. Individuals with hikikomori have substantial psychosocial impairment and disability, and some may desire treatment.

 

Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central–Southern Andes

Alejandra Caqueo-Urízar, Joshua Breslau and Stephen E Gilman

Aim: The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical–religious.

Methods: The sample comprised 253 patients (n = 117 Aymara, and n = 136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient’s primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and non-Aymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia.

Results: Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI) = 0.05, 0.62) than non-Aymara caregivers.

Conclusions: Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical–religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment.

 

Journal of the History of Medicine and Allied Sciences

Diabetes and “Defective” Genes in the Twentieth-Century United States

Arleen Marcia Tuchman

In the decades following the discovery of insulin, eugenicists grew concerned that more diabetics would survive into their reproductive years and contribute “defective” genes to the gene pool. Insulin thus came to be seen as both a blessing for the individual and a problem for the future of humankind. Nevertheless, diabetics in the United States were neither prevented nor discouraged from reproducing. I argue that this stemmed from the widespread belief that diabetes was a disease primarily of middle-class whites, who possessed positive traits that outweighed their particular genetic defect. Historians of eugenics have demonstrated convincingly that race and class stereotypes made some populations more vulnerable to coercive eugenic practices. The case of diabetes demonstrates that race and class stereotypes could also confer protection. In the end, possession of a defective gene mattered less than the perception of one’s contribution to society.

 

One «Both» Sex«es»: Observations, Suppositions, and Airy Speculations on Fetal Sex Anatomy in British Scientific Literature, 1794–1871

Ross Brooks

The hegemony of the two-sex paradigm in the European scientific imagination and wider culture did not automatically equate to the hegemony of two discrete genders. In fact, two sexes facilitated a variety of gender choices: two singular and a number of double or otherwise intersexed (most commonly referred to as “hermaphrodite” or “bisexual” in its anatomical sense). This article explores some key British medical and allied scientific texts, with reference to associated Continental literature, as a means of illustrating the complexity of the two-sex paradigm and the unexpected transformation of gender possibilities that it helped produce through the early and middle decades of the nineteenth century. Discourses surrounding the first direct observations of the earliest development of fetal urinogenital anatomy were pivotal. The prevailing view that the incipient embryo was sexually undifferentiated (a paragon of the one-sex paradigm) was challenged by the Edinburgh anatomist Robert Knox, initially as he sought to bolster his professional reputation at the height of the Burke and Hare “body-snatching” scandal. Knox suggested that every embryo began life in an essentially dual-sexed state, an individual’s sex anatomy depending on the greater or lesser development of component female and male structures. Greater clarification on the contested status of the homology—hermaphrodite distinction was achieved with the discovery of the early co-existence of the excretory duct of the Wolffian body (mesonephric duct) and the Müllerian duct (paramesonephric duct), an observation that made anatomical bisexuality difficult to ignore. The nineteenth-century’s greatest champion of primordial hermaphroditism was Charles Darwin who was pivotal in phylogenizing the principle and establishing the premise that (in his own words) “Every man & woman is hermaphrodite,” a foundation stone of late-nineteenth-century sexology.

 

Alfred Russel Wallace’s Medical Libertarianism: State Medicine, Human Progress, and Evolutionary Purpose

Michael A. Flannery

Alfred Russel Wallace (1823–1913), naturalist and explorer of South America and the Malay Archipelago, secured his place in history by independently discovering the theory of natural selection. His letter outlining the theory was sent from Ternate in eastern Indonesia and received at Down House, according to Charles Darwin (1809–82), on June 18, 1858, prompting the now-famed evolutionist to rush his languishing manuscript to press. Wallace’s contributions to evolutionary biology, biogeography, and anthropology are well known, but his medical views have received far less attention. Within the context of a strident populist antivaccination movement and an ominous elitist eugenics campaign, Wallace took his stand, which revealed itself in a libertarianism that defended traditional socialist constituencies (the working poor, the lumpenproletariat, and feminist reformers) against state-mandated medical interventions. Rather than viewing Wallace as a heterodox contrarian, this article argues that his positions were logical outgrowths of his medical libertarianism and evolutionary and social theories.

 

Investigating “Mass Hysteria” in Early Postcolonial Uganda: Benjamin H. Kagwa, East African Psychiatry, and the Gisu

 Yolana Pringle

In the early 1960s, medical officers and administrators began to receive reports of what was being described as “mass madness” and “mass hysteria” in Tanganyika (now Tanzania) and Uganda. Each epidemic reportedly affected between three hundred and six hundred people and, coming in the wake of independence from colonial rule, caused considerable concern. One of the practitioners sent to investigate was Benjamin H. Kagwa, a Ugandan-born psychiatrist whose report represents the first investigation by an African psychiatrist in East Africa. This article uses Kagwa’s investigation to explore some of the difficulties facing East Africa’s first generation of psychiatrists as they took over responsibility for psychiatry. During this period, psychiatrists worked in an intellectual climate that was both attempting to deal with the legacy of colonial racism, and which placed faith in African psychiatrists to reveal more culturally sensitive insights into African psychopathology. The epidemics were the first major challenge for psychiatrists such as Kagwa precisely because they appeared to confirm what colonial psychiatrists had been warning for years—that westernization would eventually result in mass mental instability. As this article argues, however, Kagwa was never fully able to free himself from the practices and assumptions that had pervaded his discipline under colonial rule. His analysis of the epidemics as a “mental conflict” fit into a much longer tradition of psychiatry in East Africa, and stood starkly against the explanations of the local community.

Open access, open data, open science…what does “openness” mean in the first place? by Nadine Levin

11 février 2015 - 4:17pm

Recently, the research community has been flooded with encouragement to make things “open,” meaning: freely and easily accessible, in a variety of ways, and to a great variety of audiences.  This impetus to be open has taken the form of debates over “Open Source” software licensing, “Open Access” to the published results of research[i], “Open Innovation” across organizations, and “Open Data” in research and government contexts.  We are in the era of the “New Scientific Revolution”, where the fruits of research will (supposedly…) flow out of the academic ivory tower to transform health, society, and beyond.  (Most academics will probably be familiar with these terms by now, even fleetingly, through publicity from the AAA or The White House.)

Such encouragement, commitment, and raw faith in the power of “open” is—as Sabina Leonelli and I have been exploring for the past year and a half—an articulation of what is broadly known as the “Open Science” movement.  This movement aims to make not only publications and data, but also research materials and methods open, in an effort to foster equality, widen participation, and increase innovation and productivity.  Indeed, Open Science has been promoted globally as a key component of modern society by organizations such as The Wellcome Trust, Royal Society, National Institutes of Health, Center for Open Science, Open Knowledge Foundation, and many others.  It has become increasingly central to science policy in both the United Kingdom and the United States.

But, as Sabina and I have been documenting, there remains a remarkable lack of clarity as to how the implementation, practice, and enforcement of Open Science—or to rephrase it, “openness” in science—should occur.  Policies have different terms and requirements, educational institutions have different infrastructures, scholarly communities have different commitments, and individual researchers have different priorities and circumstances[ii]. Consequently, the project has been exploring what exactly “openness” means in modern society: how, for whom, when, and where does openness occur, and what forms of scientific labor and value does the norm of openness highlight or obscure?

In everyday research, Open Science takes many forms.  It can be researchers putting their data into online databases such as GenBank, figshare, or into journal repositories.  Or, it can be researchers developing standards for data format and quality, led by institutions like the European Bioinformatics Institute (EBI) and the National Center for Biotechnology Information (NCBI).  More commonly, it might involve researchers publishing in open access journals like the Public Library of Science (PLOS), or publishing open access articles in highly-regarded journals like Nature, Science, and Proceedings of the National Academy of Sciences.  The range of these activities is staggering—involving multiple things, groups of people, and geographies—and to describe it would be beyond the scope of this blog post.

Open Science, or “openness” in science, brings unquestionable benefits.  The biomedical researchers we have interviewed, for example, emphasize that it avoids the duplication of work, and ensures the transparency of peer review.  Likewise, anthropologists emphasize that it enables the public—and research subjects/informants—to access and learn from the academic research that purports to be about and for the public.

But it also raises critical—and significantly less discussed—questions about how such openness is being done, and is playing out, in practice.  In other words, how—in terms of making things not only available, but also usable and useful—should openness be done?  By whom—early career researchers or established professors—should openness be practiced, and to whom—people in Universities, companies, or developing nations—should the presumed benefits of openness be directed?  When in research—at the very beginning, before publication—should openness occur?  These questions, which are lurking beneath the surface of the various “open” movements, pose serious challenges, as researchers attempt to negotiating the uneven, non-uniform terrain of the Open Science wilderness.

To explore some of these questions and challenges, as a starting point, it helps to remember that such encouragement to be “open” is not new, and dates back to the mid-20th century (a la Robert Merton) and even earlier[iii].  Its contours are not even or uniform, as it primarily relates to societies that have the digital infrastructures to share and generate information (for example, in Africa and South America).  Understanding “openness” in contemporary society is all about context, something that anthropologists and social scientists are well attuned to notice and study.

Through interviews with a variety of UK-based advocates of “Open Science,” this is exactly what we have learned.  Despite the overwhelming emphasis and value placed on being “open,” there are a plethora of cases in which researchers struggle to be open because of contextual, situational considerations.  These considerations are about a range of things: credit and career structures, the pressures of competition and industry collaboration, modes of intellectual property, and compliance with University and Government policies.  These might be classified as the social, economic, and political contexts that, as many scholars in anthropology and science and technology studies have observed, govern scientific norms and practices.  But the challenge of investigating how researchers go about being “open” lies in understanding how—and if—the institutions or communities that set particular agendas for openness reinforce particular norms and values, which at times conflict with researchers practices and experiences.

To anchor this discussion a real-life example, let me turn to a moment to a case study that emerged in our interviews with one of the 22 researchers we interviewed in the United Kingdom as part of this project.  This particular principal investigator (PI) was involved in systems biology research to develop models of plant biology, which used complex equations to describe cellular processes.  These models used large volumes of molecular data, and therefore relied on the existence of databases containing the data from various research groups and labs.

The PI his experienced developing such a database, emphasizing that in the data-intensive world of systems biology, the data contained in databases not only needed to be available, but also useful.  In other words, just having access to raw data would not help build models: instead, researchers needed access to curated data, which had been carefully cleaned up, edited, and annotated with metadata describing the conditions under which the data had been collected.

The PI acknowledged that transforming data for a “raw” into a “useful” state required the effort and time of the systems biology community, often in the form of “data donation,” where people might not be recognized according to traditional publication-based metrics for their time and effort[iv].  And yet, he believed that such data donation would not only benefit his own research, but would ultimately benefit the systems biology community as a whole, by allowing researchers to do novel experiments or validate existing models.

So, to give people an “incentive” to donate high-quality data to the database, the PI gave people who donated data access to a suite of online data analysis tools, which let them run experiments on the large collection of data within the database.  This, he said, provided an “immediate return” to people for their efforts, and was a sort of reciprocal “gift” to the data donors.

But then, the PI explained that this presented him with a “dilemma of openness,” a challenge which he did not know how to solve.  He acknowledged that he relied on the complete openness of the database users, but then he acknowledged that, in return, he was not able to be completely open with the data analysis tools he gave users access to.  Although he gave the data donors the ability to use these software tools online, he did not give them the source code: in other words, he did not enable the data donors to use the software on their own computers, nor did he give them access to the internal “logic” of the data analysis tools.  His reasons for doing so were, he claimed, to ensure that people did not install the data analysis tools on their own computers, and subsequently stop contributing to the database.  He felt that if he did not incentivize people to carry out data donation and sharing, they would cease to do it.

The point we are trying to make with this case study is that there are a variety of different types of openness, all of which hinge on making some things open, and some things closed.  Openness is not a binary, but rather indicates a particular strategy for engaging in a type of openness, in order to achieve a specific end result.  In the end, this PI’s struggle typified what many researchers expressed as an attempt to strike a balance between providing benefits to the individual researcher and to the community. The PI’s engagement with a particular type of openness indicated an attempt to encourage people to contribute to the overall systems biology community through data donation, but also to give people the opportunity to derive personal benefit by using data analysis tools on a large pool of data.

However, this case study also raises broader questions about the types of norms and values that are embedded within Open Science initiatives, and how these affect practicing researchers.  As Javier Lezaun and Catherine Montgomery have written in their excellent paper on Open Innovation in pharmaceutical research, notions of “sharing” and “openness” are predicated on the labor of researchers and institutions, who feel the imperative to put research materials into circulation.  Within Open Science, researchers are encouraged to make labor-intensive and value-laden outputs open.  And yet, it is precisely these outputs that often remain unacknowledged or under-valued, and which researchers resist making, or do not want to make, open.

Overall, it helps to remember that the materials and objects of research do not have value in and of themselves, and instead require work—through policies, norms, economies, and infrastructures—to have or be denied value.  Sabina and I, in a paper we are currently developing, argue that Open Science generates notions of value (which some argue is part of the neoliberal economy of higher education), which become embedded in the objects that researchers are encouraged to share and circulate.  While the more “traditional” outputs of scientific research—data, papers, intellectual property—are valued by the Open Science movement, they also contain less tangible aspects of value to researchers—skill, labor, knowhow, attribution, credit.  This presents a very real tension for researchers, like the PI whose story I recounted above, as they try to negotiate openness in practice.

 

Nadine Levin is a Postdoctoral Fellow at UCLA in the Institute for Society and Genetics, where she working on an NSF-funded project on “What is metabolism after big data?” and what consequences this has for biomedicine.  Previously, she has done work at the University of Exeter on how Open Access and Open Data policies affect the practice of post-genomic research, and also on how intellectual property regimes in the arts and humanities are affected by “the digital”.  She completed her DPhil in 2013 in Anthropology at Oxford University, with a dissertation that explored how researchers in the field of metabolomics create, analyze, and use data to make claims about metabolism and health.  

 

Notes

[i] You can read more about how this affects Arts & Humanities researchers in another blog post I’ve written

[ii] See the recent Nuffield Council on Bioethics report on “Biological and health data

[iii] See Chris Kelty’s work on model organism newsletters

[iv] See Sabina Leonelli and Rachel Ankeny’s forthcoming paper on data donation and credit attribution in the edited volume “Postgenomics”

Brigitte Chamak and Baptiste Moutaud’s Neurosciences et Société by Fernando Vidal

10 février 2015 - 9:30am

Neurosciences et société: Enjeux des savoirs et des pratiques sur le cerveau

Brigitte Chamak and Baptiste Moutaud, eds.

2014, Armand Colin, 322 pages

 

Neurosciences et société is a valuable addition to the diversified universe of studies concerning neurosciences in society. Indeed, the last few years have seen the publication of a number of important articles, single-authored books, and edited volumes on different dimensions of how the neurosciences have become prominent in the public eye, the extent to which neuroscientific discourses have penetrated a variety of contemporary contexts, a minority but nonetheless highly visible “neuroscientific turn” in the humanities, and the inflation and hype of the neuro as well as on the limits of the hopes and promises that sustained them. From laboratory ethnography to the philosophy of mind, no area of intellectual endeavor has remained unconcerned, and nor has business. Where does that leave society and subjectivities?

Sociologists have demonstrated that most people use neuroscientific information and idioms pragmatically and that, contrary to what was apparently expected, the neurosciences have neither dramatically altered people’s relations to their selves, nor radically challenged our notions about the self and the world. As the sociologist Alain Ehrenberg remarks in his contribution to Neurosciences et société, neuroscientific research is by definition mechanistic and focuses on causes; but in real life, people are rarely “reductionistic,” and even those who are curious about brain-based explanations also look for the “reasons” (e.g. biographical and existential) that contribute to explanations of their psychological distress or mental illness. This, however, does not mean that the societal leverage of the neuroscientific outlook depends on individual preferences. When (just to take one example) the director of the US National Institute of Mental Health asserts that “mental” or “behavioral” illnesses are in fact brain disorders and that psychiatry must fully become a neuroscience discipline, he formulates views that exert a major influence on public health policy and the allocation of resources – and thereby impact people’s lives regardless of individual or group conceptions and practices of the self.

Such are some of the “stakes of knowledge and practices of the brain” that Neurosciences et société explores from several points of view and by way of a variety of materials. The volume is composed of five sections including a total of eleven chapters. Part I comprises two chapters tracing the development of contemporary neurosciences; in Part II, two further chapters deal with the presence of the neurosciences in the French printed media of the 2000s and the “distortions” that neuroscientific discourses undergo not only through “journalistic” adjustments in the media (magazines and television), but also in scientific publications themselves. Part III devotes two chapters to exploring therapeutic interventions and the notions of care they embody through the cases of deep brain stimulation and cognitive remediation therapy in schizophrenia; these two chapters consist in varying degrees of materials from ethnographic work carried out in psychiatric institutions. The three chapters in Part IV examine the dynamics of associations of patients diagnosed with autism and obsessive-compulsive disorder, as well as the genesis and French forms of the “neurodiversity” movement. Finally, Part V comprises two reflections around the tensions between mind and brain, one on the brain as the object of philosophy and self-reflection, another on the locus of psychiatric illness: the mind or the brain, the self or an organ of the body.

Neurosciences et société contributes to a scholarly field dominated by the English language and by analyses generated in and dealing with Anglo-American settings. On its topic, even if its readership will be necessarily limited, a book in French and making room for other contexts is to be welcomed. Inevitably, however, its publication does not by itself change the basic situation: almost on the contrary, since the chapter bibliographies are themselves witnesses to an obvious Anglo-American ascendancy. At the same time, this “hegemony,” if it is to be so called and whether or not we judge it inevitable, is very much like what happens in many other domains. What the editors depict as the “social life” of the neurosciences – the circulation and transformation of neuro discourses, information and practices, as well as their appropriation by individuals and groups – is indeed a global phenomenon. There are, of course, some local differences. For example, Brigitte Chamak in several articles and in her chapter (with Béatrice Bonniau) describes the “French singularity” as far as “neurodiversity” is concerned. The members of French autistic persons’ associations are much more inclined than their North-American counterparts to accept the definition of autism as a neurodevelopmental disorder, rather than as a way of being that results from a peculiar but not fundamentally pathological wiring of the brain. Still, it is fair to say that, from Brazil to China and from Canada to Australia, the commonalities in the forms taken by the “social life” of the neuro are – where such a “life” exists – far more salient than the significant differences. Beyond the insights and information offered by the individual chapters (and even in the regrettable absence of an index), the mere fact that Neurosciences et société attests to such globalization is significant in itself.

 

Fernando Vidal is Research Professor of ICREA (Catalan Institute for Research and Advanced Studies) at the Center for the History of Science, Universitat Autonoma of Barcelona. He has published widely on the history of the human sciences, from early modern psychology to contemporary neurocultures. He is author among others of The Sciences of the Soul: The Early Modern Origins of Psychology; his most recent edited book (forthcoming, with Nélia Dias) is entitled Endangerment, Biodiversity and Culture. 

The “Foreign Correspondents” series features reviews of books published in languages other than English.  It is edited by Stephanie Lloyd (Laval University). If you would like to suggest a non-English language book for review or if you are interested in reviewing for “Foreign Correspondents,” please contact Stephanie directly at stephanie.lloyd@ant.ulaval.ca.

Erin Koch’s Free Market Tuberculosis by Andrew Mcdowell

5 février 2015 - 9:30am

Free Market Tuberculosis: Managing Epidemics in Post-Soviet Georgia

by Erin Koch

2013, Vanderbilt University Press, 240 pages

 

Erin Koch’s Free Market Tuberculosis: Managing Epidemics in Post-Soviet Georgia (2013) provides an engaging and conceptually stimulating portrayal of the transition, in the late 20th and early 21st century, from Georgia’s Soviet style of tuberculosis (TB) care to globalized and neoliberalized Directly Observed Treatment, Short-Course (DOTS). Extending existing literatures concerning the effects of neoclassical economics on subjectivity and healthcare, Free Market Tuberculosis is an important contribution to critical medical anthropology’s emerging discussion of globalization, infectious disease, biosocial perspectives on disease, and political economy.

Koch examines Georgian TB services as a window on global processes of standardization and—inspired by Georgia’s geographical position as a crossroads—investigates DOTS as form of standardization mediated by local practices and history. The text integrates ethnographic accounts of field engagements in zones of knowledge—pediatric wards, sputum smear microscopy laboratories, and prisons—that contest DOTS’s processes of commensurability to “…highlight contingencies and contradictions that emerge amid standardization at the intersection of different political economies of care” (p. 88).

After an informative introduction to TB treatment and science, Koch argues that her ethnographic work in early 2000s Georgia is illustrative of the twinned global health strategies of standardization and neoliberalization. She locates these practices in Georgia’s transition to a de-centralized economy or the “free market.” Though she leaves the question of “the market” open, Koch takes up the first half of the term and focuses on freedom as a critical lens. She leverages the concept of neoliberal freedom to trace the effects of DOTS as a “technology of subjectivity” for patients, doctors, prisoners and everyday Georgians. She examines the double binds of standardization and freedom by attending to two primary transitions: 1) the change from a planned economy to a free market, and 2) the shift from Soviet health care and active case finding to global health and passive case findings. In each case her text examines the tumults of transition, to examine political ideologies of health care lain bare by TB treatment, soviet and capitalist. Early chapters convincingly argue that state care and global geopolitics are best understood as integral parts of each other.

In each case, Koch focuses on a contradiction that reveals how the intersection of an unplanned economy and DOTS’s medical standardization does not necessarily produce increased freedom. With DOTS standardization, Koch argues, come new technologies of knowing the body and a “shifting status of expertise” (p. 109). To support these claims, Koch shares the experience of doctors working to care for patients. Her examples show that DOTS has eroded the role of physician expertise and reduced each physician’s ability to individualize care as each TB patient becomes a commensurable biomedical subject. She explains: “Many physicians who were trained under the Soviet model point out that the surveillance of the DOTS protocol is, ironically, more stereotypically Stalinist in its implementation than the former system” (90). Koch follows a similar tack on patients. She suggests that logics of passive case finding and fee-for-service care work to discipline rather than free subjects. The free market for health care is, in Koch’s analysis, a market-based mechanism to promote what she calls neoliberal forms of self care and risk reduction. In both cases Koch sees DOTS as a “technology of subjectivity.” She describes the interactions between existing forms of subjectivity and DOTS to understand how contradictions like the ones around “freedom” permeate not just forms of being and doing around TB, but ways of experiencing and knowing the disease as well.

In chapter four, Koch moves medical anthropology into new territory. She extends her focus on “technologies of subjectivity” to the national resource laboratory for TB. She concerns herself with the primacy of bacteriological knowledge and the production of that knowledge in the lab by charting what she calls a “local microbiology.” Riffing on Margaret Lock’s (1993) concept of “local biology” and Science Studies, Koch locates the laboratory as a field site that lays bare the tangled knot of bacteriological physiology, the technologies used to make bacteria visible, the bodies and bodily substances from which they are extracted, changing labor practices, and values that create a local microbiology of TB. By looking to the lab, she shows, along multiple axes, the failure to expunge these connections from a bacteriological test for TB and a standardized answer to the diagnostic question of “TB or not TB?”

Koch focuses on two particularly illuminating aspects of this irreducibility. The first relates to the types of containers that carry sputum samples to the lab, and the second concerns the temporality of bodies and bacteria. Koch recounts a fascinating ethnographic moment in which samples from the general population arrive in used jelly jars and plastic tubes from institutionalized prison populations. She analyzes this as one example of the ways external social forms enter the lab. In the second example, she shares moments in which bacteria and technology come together to undermine attempts to routinize time and better manage labor; she references the bacteria’s slow growth rate and the ocular fatigue of the women looking in the microscope to present a picture in which local knowledge suggests that the amount of bacteria in a sample can at times become an index of disease severity. These processes and contingencies suggest to Koch that, “clearly microbes do not simply shape social aspects of infection and treatment; local cultural politics of science (and biomedical) expertise also shape the status and meanings of microbes, and how they relate with laboratory cultures, bodies, and protocols” (p. 149).

In the final body chapter Koch engages with an additional problematic space for standardized DOTS therapy: the prison. Following on the preceding chapter’s problematization of sputum, Koch outlines a fascinating economy of TB-positive sputum in Georgia’s prisons in which sputum becomes a commodity traded among prisoners to access a TB facility with considerably better carceral conditions. She traces an English loanword, “cheated,” from lab to prison. Along the way Koch tries to understand the multiple discourses at work as prisoners, TB workers, and prison workers participate in an economy of care and sickness. Throughout the chapter, she continues to trace the values and anxieties that a carceral/TB care economy raises for international aid workers, Georgian bureaucrats, and public health workers.

Koch concludes with a short discussion aimed primarily at global health practitioners. She re-states her thesis about standardization but unpredictably ends the text with a discussion of one of TB’s binary propositions, namely, a difference in priorities between latent and active forms of TB in the body. She suggests that the global health world take a critical look at this binary, and builds a foundation for contemporary work on TB that troubles the temporal relations embedded with TB care.

The text is, at times, a conceptually dizzying array of possibilities. Koch raises more ideas and concepts than she has time to fully examine. Instead, the book is a kind of bricolage of small sections bound, at times tightly and at others loosely, to one another. In the same vein, her strongest arguments must be read into the text. She engages technologies of subjectivity but gives her reader little guidance about what subjectivity may mean for her, her Georgian colleagues, or Georgian TB patients. Similarly, Koch’s use of the word market in the text’s title goes unexamined. This omission is particularly striking, as the text traces TB’s transitions along with market transition. In Koch’s post-Soviet context a discussion that helps the reader think past his or her own conceptions of the market could be fruitful, especially as Koch views market forces as important parts of the local microbiological dynamics and standardizations. Indeed, her book sits in a middle space, traversing conversations in global health and medical anthropology, though I think too often she remains in global health.

Nonetheless, her work informs my own TB care in contemporary India. In India, early 1990s liberalization and revision of the National TB Control Program have built a strikingly similar context in which state provision of care takes place within a set of complex free market forces. Indeed, Koch’s focus on DOTS as a global strategy points to common problems faced outside of Georgia, including the programmatic preference of sputum smears over chest x-rays, the shifting value of expertise, and the free availability of pharmaceuticals. Her text also helps chart a dynamic relationship between private and public provision of TB care, and she presents a well-grounded and multi-axial consideration of how standardization affects all actors involved in TB care, not just patients. Free Market Tuberculosis has influenced my own work, inspiring me to think more about the effects of biocapital and pharmaceutical markets on knowledge and care provision in the private sector, as well as the effects of markets for health and healthcare products on the creation of diagnostic knowledge—particularly in an Indian context where empirical diagnosis is common.

Free Market Tuberculosis is geared toward a specialist audience, but has much to say for those interested in post-socialist transition, neoliberalism, and global health. It is situated deeply within a critical medical anthropology canon and was one of the first in-depth ethnographic studies of global health to emerge in the field. Though her analysis can stray from ethnographic richness, these diversions spark a flurry of ideas in the mind of any interested reader. Koch’s work might be productively read in conversation with Keshavjee’s consideration of neoliberal transformation in Tajikistan in The Blind Spot: How Neoliberalism Infiltrated Global Health (2014) and Ian Harper’s Development and Public Health in the Himalaya: Reflections on healing in Contemporary Nepal (2014).

 

Andrew McDowell is a postdoctoral fellow in Social Studies of Medicine, and Epidemiology and Biostatistics at McGill University. An anthropologist, his research explores the practice of medical care in India with a focus on tuberculosis, unlabeled pharmaceuticals, and the margins of biomedicine. Building on previous research that examines local biologies of global TB among rural low-caste Rajasthani TB sufferers and their caregivers, his current work—in Mumbai’s informal settlements and the clinics of physicians who practice there—strives to outline knowledge practices around diagnosis and ethical practice.

 

Works cited

Harper, I. 2014 Development and Public Health in the Himalaya: Reflections on Healing in Contemporary Nepal: Taylor & Francis.

Keshavjee, S., and P. Farmer. 2014 Blind Spot: How Neoliberalism Infiltrated Global Health: University of California Press.

Koch, Erin. 2013 Free Market Tuberculosis: Managing Epidemics in Post-Soviet Georgia. New York: Vanderbilt University Press.

Lock, Margaret. 1993 Encounters with Aging: Mythologies of Menopause in Japan and North America: Berkeley: University of California Press.

Ian Harper’s Development and Public Health in the Himalaya by Alice Street

4 février 2015 - 9:30am

Ian Harper, Professor of Anthropology, Health, and Development at the University of Edinburgh, talks to Alice Street about his book Development and Public Health in the Himalaya: Reflections on Healing in Contemporary Nepal.

 

AS: Ian, maybe you can tell us a little bit about your history as a medical practitioner, and how you came to work in Nepal.

IH: Well, I had been practising as a physician for about five or six years in the UK, both in hospitals and as a GP. I’d known about the job of working in Nepal with an International Non-Governmental Organisation (INGO), the Britain-Nepal Medical Trust (BNMT), with the grand title of Hill Doctor for a number of years, and I applied and got the post. That started in 1990. The job involved living in rural parts of east Nepal and running TB clinics—two of them, one in Dhankuta District, one in Sankhuwasabha District. I was working with the government and public health workers to think about how to control tuberculosis. I did that for nearly four years. Two years as a Hill Doctor and then a year and a half in a more managerial role, running, or being responsible for running, services and HR stuff for the INGO I was working for in the eastern parts. The area had a population of about two and a half million.

AS: And what made you give that up to become an anthropologist?

IH: Did I give it up? I suppose I did. I developed a number of questions around the practice of medicine in a highly pluralistic healing environment on the one hand. And on the other hand, [it] was a more self-reflective attempt to understand the political and economic conditions that allowed me to be there in the first place—so the conditions under which myself as a foreigner, practising medicine within the context of development, was able to work in this particular environment. I thought that when I finished that I’d either do a masters in public health, or anthropology would be a way of understanding these issues in more detail. Of course, I hadn’t fully appreciated that anthropology was even more reflexively anxious than public health. Public health didn’t have any anxieties or qualms about what it was doing, whereas anthropologists were nervous about all sort of things—the right to speak and so on and so forth.

AS: Can you think of any experience that you had in Nepal that made you feel that there were problems to be addressed, and that you weren’t able to address through your position as a hill doctor?

IH: One issue can be reflected in cultural differences, reflected for example with groups like the Gurung (Tamu), who are a tribal group, to use an old parlance. And I remember an elderly man who was diagnosed with TB, and it was treatable, it was drugs-susceptible. But he, after a conversation with his family, refused to live in, to stay in the kind of restroom that we had, in order to have his streptomycin injections. And it was more important for him and his family to control the manner of his dying, such that the local healers, the shamanic practitioners, could lead his soul to the land with the dead, so he wouldn’t become a hungry ghost. So in that sense, wellbeing involved a good death as well. So there were questions that arose about what does health mean, and what does being instructed by medicine mean, in a context where there are other forms of practices, which define healthy wellbeing in a totally different way. So that’s one example.

AS: The introduction of biomedicine into a pluralistic medical environment is very much what your book is about. Maybe you can tell us a little bit more IH: Well, one of the things that struck me was the ubiquitous and ever expanding availability of pharmaceuticals. So on the one hand you’re introducing alien diagnostic principles, if you like, into an environment where those forms are unstable and aren’t necessarily accepted by people. On the other hand you have increasing material availability of drugs, which are taken in increasing numbers. So that’s one kind of facet that interested me. And that led not only to this book, but also to further research looking at the expansion of pharmaceuticals and their production and distribution, So that’s one issue. Another issue was the relationship between development funding, resources, and medicine. And the resource availability, I suppose, and the availability of practitioners. So you have a situation where you have a whole new tier of health workers, whose understanding of health has changed radically within a generation. So from understanding health to be related to witchcraft and human imbalance and so on, to an understanding that it’s more biomedical. So these transformations had happened rapidly, and it was trying to grapple with that and gain a sense of this and that drove me to write this book.

AS: Medical pluralism is something that has fallen off the medical anthropology agenda a little bit in recent years, perhaps alongside an increase in the focus on global health. Do you think that your book puts it back on the agenda, or that it needs to be put back on the agenda in some way?

IH: Well, I think so. Because the practices do fall into an extraordinary range of other practices. And so, on a very pragmatic level, that’s what you’re dealing with—people’s different understandings of health, different access to different healers, and so on. And the relationships that they develop between themselves, and how their own practices themselves change in relationship to the introduction of biomedicine, and how biomedical practices move in relationship to the understanding that they have with these other practitioners. So that’s the environment within which you’re working. So it is a shame that it’s fallen off the agenda really, and I think it should come back.

AS: One of the things I found really refreshing about your book was exactly this focus on the practicalities involved. The kind of theoretical framework you provide us with is one in which biomedicine as a particular kind of discursive formation of knowledge is able to travel and be stabilised in these complex and difficult environments, through certain kinds of technologies and programmes and strategies. But what came across to me ultimately was how fragile biomedicine was—not biomedicine as a domineering form of power and knowledge in this space, but actually people were desperately trying to find a place for it and embed it and entrench it in these other complex arenas. And often weren’t making that much headway.

IH: Yes, to some extent, that’s true. As people from the social studies of science have pointed out, the introduction of protocols has been central to the attempted stabilisation of biomedical forms. So diagnostic algorithms, particular ways of diagnosing things in these particular circumstances, all lead towards a form of stabilisation. But yes, it is fragile.

AS: It seemed to me that the hospital appears in this story as a particularly powerful means of stabilising biomedical knowledge. Would you say that’s true?

IH: Yes, I think that is true. It had been there for a very long time. I mean the history of the mission hospital in Palpa District is interesting. It certainly had a very fragile political history and tenuous support. It was a form that introduced antibiotics and introduced diagnostic capabilities that had never been seen before. So people got better, for example, from infections. And its reputation increased, and the reputation of foreign doctors, as a particular kind of force, a magical force, if you like, became very powerful, which drew people from far and wide to come and seek out its services. One of the interesting things about the mission hospital was that within the mission hospital…this was an area where there was a lot of witchcraft, you know, lots of people who don’t necessarily know each other coming into contact and so on. So there was also a lot of alternative and other healers hanging around outside the wards, and sneaking in and chanting, and doing other things. And it makes it a particularly interesting site, I think, for attempts to understand these particular stabilisations.

But the very structure of the hospital itself, the very architecture, leans towards the generation of particular knowledge forms. So, as an ill person you come in with a mass of symptoms, you get characterised in a particular way, you end up in an outpatient, say for psychiatry or mental health, and you get diagnosed, and there you go. So the stabilisation, the diagnostic stabilisation, is solid there, and there are the antibiotics and other drugs that are available that can be taken. But it’s a very fragile form of stability, in that, you know, the moment you’re outside of the walls again, there are all these other multiple interpretations for understanding how you’re ill, so it can shift again. And the stories that the shamans and the herbalists and others hand out, the powers and the failures of medicine, that was a particularly interesting part of the fieldwork…talking to people about what worked and what didn’t, and what it was good for and what it wasn’t good for. And that’s when you came across this distinction between diseases of the body that hospitals were particularly good for dealing with, and other diseases that fall on you from the outside, more spiritual forces, for which [the shamans and herbalists] were better arrayed to deal with.

AS: That’s interesting, because in Papua New Guinea, traditional healers make very similar kinds of distinctions, but they’re actually encouraged to do so by medical practitioners, who say, ‘okay everything that we can deal with we will classify as biomedical problems that should be referred to us. And anything else that we actually can’t deal with, and is all airy fairy and intangible anyway, we’ll let the traditional practitioners continue to deal with those problems, because they don’t concern us and they don’t impinge on us.’

IH: That’s true to some extent, and indeed the mission hospitals set up trainings for traditional healers to deal with just that. They wanted them to become sites for referral, basically. Of course, the healers themselves had other ideas; they wanted to increase their power and influence by being able to tap into biomedical forms of knowledge. So you have use, for example, of stethoscopes by healers, who will use it to sweep out spiritual forces, or the use of a certificate, showing the power of the state, that legitimates their practices. And it’s put them in a very ambiguous space with state functionaries and the doctors, who saw all this stuff as superstitious nonsense, really, and forms of impoverishment. So that dynamic was interesting.

I witnessed a practitioner using the stethoscope for sweeping out the forces. It was due to soul loss, so he was sweeping out various forces and chanting and calling back the soul of this little kid. And at the same time, he was giving electrolyte replacement therapy because the child had diarrhoea. So they were not necessarily incompatible in the minds of the practitioners or the people themselves. It’s the doctors who can’t cope with it; they see it as this form of impoverishment and so on, and superstition.

AS: You elaborate more on the opposition between local culture and biomedicine in a case study of Vitamin A programmes. And there, you talk about the kinds of assumptions that are made about culture being the obstacle to eliminating Vitamin A deficiency. You draw on Paul Farmer’s work, and others’, to talk about the structural obstacles to people being able to eat the kinds of diets that would prevent that problem. But I was confused sometimes as to where the place of culture in your account was…

IH: Well, I suppose it depends where… let’s think about culture in various ways. One is, it’s the realm that needs to be purified, so culture is a barrier—you know, the barrier logic we find in so many medical journals. Culture is a barrier to the implementation of proper medical forms. So in that sense, you get this distinction between what is superstition and what is good practice and what isn’t. And the health workers will purify that, through thinking, using ideas of science, what is good practice and what isn’t.

AS: This is the view from the clinic.

That’s the view from the clinic, so that’s one area. But then of course, the clinic itself, or culture… at least this is the way I started to think about it, you can challenge me on this if you like. But when you become ill, it’s precisely culture that breaks down. So when you’re really ill, say you’ve got TB, that’s the point that people will do anything in order to get better. So you see the kind of dissolution of culture. And so that creates a moment of vulnerability. And it’s that vulnerability that can be exploited, that’s what missionaries exploit. And they exploit it by… well, they exploit [it], I think, rather crassly by trying to introduce the idea of the Lord, and God, and redemption.

I’ve drawn on Homi Bhabha and others here… I think he phrased it as ‘it brings a moment of doubt in the native space of enunciation.’ By which he means that it’s precisely that point where local understandings break down that you can introduce new ideas. And that’s how power works and functions. And I think that’s very true. And of course, I was as complicit in that as anyone else. So take my neighbour, whose daughter was constantly ill, constantly hot, constantly being told she’s being overheated, and on antibiotics. I teased away at the possibility of another way of thinking about it, and that allowed a space to do something about it. And that’s also what some of the health workers I worked with said they wanted to achieve… let’s introduce doubt into the way that people think about things, and then you create a fertile land for new ideas.

AS: So the view from the clinic, in that sense, isn’t always wrong.

IH: No, I don’t think so. And I don’t think my book sets up a dichotomy between right and wrong. The idea of being sceptical towards the proposed impacts and aims of particular programmes, to show that actually, often it’s other things that are happening. And we might think we know what we are doing, but what we don’t know is what we do actually does.

AS: I was really interested in the Vitamin A programme case study of… on the one hand you’ve got civil war, you’ve got out migration, and you’ve got potential famine in some areas, and extreme poverty. Which are obviously all going to impinge on the kinds of foods that you can grow and eat, and how much food they can grow and eat. On the other hand, you do also have ideas about hot and cold, which actually mean that women don’t think that you should eat green, leafy vegetables after pregnancy.

IH: With the political and economic issues around access to eating, what you can eat, what poor people can eat and can’t eat—[it] is an issue. So it’s all very well and fine, you can say, ‘well you’ve got to eat liver and eggs and stuff,’ but if you can’t afford it, you’re not gonna be able to eat it. And the other thing that struck me was that the health workers themselves often were telling people to do certain things that they themselves would never have dreamed of doing. So there was almost an internal cognitive dissonance between what they were telling others to do and what they would have done themselves. And having a child in the field was very interesting because Tara, our daughter, was a constant focus of moral discourses around how to keep children well. So how can you possibly eat green, leafy vegetables if you’re breastfeeding? And this would come from the same people who were giving out instructions to other women to eat green, leafy vegetables. So there’s this disjuncture there between science’s understanding and cultural understandings around heat and cold and so on.

AS: You also have this wonderful phrase in your account of Vitamin A, about the capsule of promise.

IH: My interviews with people on the Vitamin A programme allowed people to reflect on the past and the future in interesting ways. So they’d say, ‘oh well in the past we were a lot healthier, and there were no insecticides in the food, and so therefore we need these capsules in order to be well, even though we live longer.’ So there’s this sort of ambiguity articulated around the capsule form itself.

AS: What was really interesting in that narrative was the fact that these capsules are also associated with an outside…

IH: Indeed, with this idea of science.

AS: So our lives have changed, and they’ve changed in all these ways, which means there’s uncertainty—uncertainty about the safety of the food, about the qualities of the food, about what it’s going to do to our bodies. But in order to deal with that, we have to go even further toward this outside…

IH: One of the reasons why the mission hospital was so popular was because they had access to the drugs that people had greater faith in. Now, Nepali drugs and other drugs, we don’t trust them… but the missionary drugs, they come from foreign places, and we know them and we trust them. So there is this paradox, if you like, it’s the outside forces that cause the problem, but can also solve them.

AS: The last chapter in your book is about the TB dots programme. And this is really the aspect of that early work that you’ve taken forward, and you now have a Wellcome Trust grant specifically to study the TB dots programme. What is it do you think about TB and what you saw in the 1990s and early 2000s, about the way the TB dots programme was being implemented, that has kept you interested for so long?

IH: Well one of the reasons is that it’s the biggest public health problems in adults in Nepal, so there’s a very practical desire to remain engaged in public health work. So there’s that. And I’ve developed close ties with the TB programme and other NGOs working there. So there’s been this constant desire to try to improve the availability and access to TB services, so that’s one reason. The second reason is that the way that the TB programme was introduced through the dots programme is extremely hierarchal and not very patient centred and patient friendly. So there was a need, I thought, and had long felt, to ease up on that and to trust people and their understanding of the disease more. So it’s a very hierarchical, very disciplinary form of public health intervention.

AS: And do you think that’s changed at all since you first started working there?

IH: A little… the WHO have eased up a bit on the idea that there’s a magic bullet approach that has to be observed, so there has been some change there. Also, and sensibly, a lot of the health workers just ignore it and have other ways of supporting patients, so that’s always encouraging, it’s nice to gain a better understanding of that. Although attempts to explain that to those in positions of power in the NDP is often met with degrees of frustration that they’re not doing their jobs properly.

AS: One of the things I really liked about that last chapter was this idea that, in a way, one of the key ways in which biomedical knowledge is stabilised, is actually through it’s destabilisation, that it’s actually all the little ways in which these health workers work around the protocols and systems and categories, that they’re being asked to use that actually they make it work, and increase people’s trust and willingness to be enrolled in that programme.

IH: Yes, I think that’s right, it’s the very flexibilities that they’re able to introduce, rather than the rigid ideas, that allow those programmes to travel.

AS: What would you see as the key contribution of your book?

IH: In my PhD I purified myself of all the medicine in it, and later I thought, well that’s not playing to the strengths I had, being a dual practitioner. So I reintroduced it. I wrote it for three audiences, which is why it’s not overly theoretical and why I hope the language is accessible. I wrote it for medics working in these situations, for development workers, and for anthropologists. And so there’s a narrative arc in it, which is very much, this is what I did, this is what I thought was happening, but actually, you know, here as anthropologist I can reflect on it in a different way. That’s where the idea of scepticism came in, to be sceptical towards the intended impact of what we thought we were doing.

AS: One of your key criticisms of the ways in which, for example, shamanistic practices are represented in medical discourse in Nepal is that they present the extreme, and the extraordinary, as the norm.

IH: Yes, that’s absolutely right. And that’s modern medical power at work as well. So when you talk to doctors about these practices, they’ll always give you the one example of something horrendous that had happened. All the hundreds of thousands of contacts between traditional practitioners and people… and that strikes me as illogical and slightly daft, to not appreciate that as a form of power. It would be like me… and I saw several cases of thiacetazone, reactions to thiacetazone, where people died. But you’ve got tens of thousands of these tablets being given out… if I was to represent that as being representative of normal, that’s just wrong, it’s wrong headed, it just doesn’t make sense.

AS: I thought, ironically, that one of the messages that I, after reading this book, I would give to development workers, or medical workers, is to be a bit more pragmatic. You as the anthropologist seem more pragmatic than the practitioners. They seem so focused on a utopian ideal of development, of national development, that it often actually precludes the acceptance of and working with the conditions in which they find themselves.

IH: Yes, I think that’s right. And I have noticed that working in other contexts as well. The ideological drive does tend to drive out certain pragmatic interventions. There is the big policy stuff, and then there are the simple little pragmatic interventions. So yes, be more pragmatic, think about what little things can be achieved within the complex context within which you find yourself. Rather than thinking about sweeping changes. So I would definitely agree with you.

AS: And what would be the key message that you would want medical anthropologists to take home from reading your book?

IH: Don’t overdo the Foucault, and let’s…

AS: What do you mean—it’s full of Foucault!

IH: It is actually! No, do as much Foucault as you like! No, well, first of all, I think often the materiality of things like pharmaceuticals get overlooked in understanding pluralistic practices. I’m an empiricist really so if you get back to the empirical grounding, the areas where we work, there’s lots of practices going on, it’s trying to understand them and their relationships more. Let’s not over determine theory, apart from Foucault [laughs].

AS: I suppose one of the things I took from the book was to take seriously the real problems of public health. There’s a lot of real good that biomedicine can do, but it’s complicated because people are trying to make it travel to spaces where it has no pre-established home.

IH: Well if you think of the medical anthropological canon, it’s very anti-medicine. And probably anti-humanistic. Prior to this there were very few books actually that would reflect on medicine in a positive light. Which is ironic because Foucault, of course, quite rightly pointed out that modern forms of power work because things work. Medicine works as a modern form of power because medical interventions help people.

Medics and public health workers who I talk to have no problem with Foucault at all. They say ‘Absolutely. He’s spot on, it’s exactly what we’re trying to do.’ Whereas, peculiarly, from a medical anthropological perspective, it’s often seen as a very negative force. And I think that’s a bit of a shame. Indeed, medics and public health workers who study medical anthropology notice very quickly this very strong negative trend towards health and medical intervention. So it causes constant distress to students who come from a health background into medical anthropology. So I hope this is a counterpoint to that, with the Foucault still in it.

 

Ian Harper is Professor of Anthropology, Health and Development at the University of Edinburgh. He has published widely on medical anthropology in relation to public health programmes in Nepal. Between August and December 2008, at the invitation of the Director, he worked in the Nepal National Tuberculosis Programme (NTP) assisting with the implementation of Global Fund funded programmes. From 2012 he is the recipient of a Wellcome Trust Senior Investigator Grant for the project: Understanding TB Control: Technologies, Ethics and Programmes and he is PI on a grant from Phase 3 of the ESRC / DfID Joint Programme for the project “New Norms and Forms of Development: Brokerage in Maternal and Child Health Service Development and Delivery in Nepal and Malawi.” His book, Development and Public Health in the Himalaya: Reflections on healing in contemporary Nepal, is published with Routledge.


Alice Street is a Chancellors Fellow in Social Anthropology and Director of the MSc Programme in Medical Anthropology at the University of Edinburgh. Her book, Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital, is published with Duke University Press.

Concussion’s Memory Problem by Emily A. Harrison

30 Janvier 2015 - 10:31pm

In the lead-up to this year’s Superbowl, a surge of scientists, celebrities, athletes and everyday citizens all weighed in, many with tongues-in-cheek, to a so-called scandal about the deflation of game balls prepared by one of the competing teams. While popular media bubbled with the latest news for nearly two weeks, a simultaneous commentary was launched by some who were appalled at the intensive attention to so small a matter while major issues with the NFL itself were left silent. The frenzy, they argued, was not merely surreal or even harmless, but rather an intentional distractor from the serious, fundamental and unresolved problems in the game and the league today.

This counter-discourse has been slowly but steadily building a critique that, in a number of instances, NFL politicking is masking these problems. Questions accumulated this past year, for example, about the settlements proposed in suits raised against the NFL and NCAA. But one of the most crucial considerations in the present crisis and response has not received nearly enough press: Namely, that people knew over a century ago that head injuries in American college sports were dangerous. This present distraction and these proffered settlements are not the first time that the serious issue of head injury has been brushed under the rug.

It’s a common misconception today that the concussion crisis now simmering in American sports comes on the dawn of new knowledge that concussive and sub-concussive head injuries are dangerous. In a New York Times article that ran in May of 2014, for example, the former city commissioner of Marshall, TX claimed that we have only recently learned of football head injuries’ long term health impact. The article quotes him explaining that “once a society gets to know something is unsafe, we forget there was a time that we didn’t.” The comment, though well-intended, fumbled the real story about what has been forgotten. Historical evidence shows that even in the late 19th and early 20th century, in the earliest days of college football, players, doctors, coaches, administrators, and fans all knew that concussions were unsafe.

This is a crucial thing to be aware of in the current crisis and proposed reforms, because what was once forgotten can be forgotten again. American society today has the benefit of a massive media industry keeping track of the concussion crisis; but the popular and scientific media published widely on the concussion crisis in the early 1900s. There is a culture sensitive to risk and safety today; but these characteristics defined the Progressive Era during which football’s popularity surged. And there are scientists right now studying the pathophysiology and long-term behavioral health associations of concussion and sub-concussive hits; but ample evidence existed at the turn of the 19th century to make a convincing case of concussion’s dangers at that time.

Society forgot what it knew because significant work was done by football’s supporters to hush up evidence in the media and other popular discussions, to discourage scientific research, and to legitimize football by allying it with morally-reputable institutions and with cultural ideals of manliness that carried great weight at that time. What was known was unlearned, forgotten, pushed away into a corner. Over time, the first surge of the concussion crisis settled away into the storage bins of history.

There are, of course, differences between the first emergence of the concussion crisis and the resurgence of concern today. What was a medical problem among elite college men in football’s early days is now a public health problem whose impact has spread across the population and raised particular alarm for its effects on children. And today’s concussion crisis is bolstered by advocacy groups that have developed substantial infrastructure that did not exist in the past.

These advocacy groups, individual writers, and citizens in everyday conversations, are working within an implicit imperative to keep clear eyes on their goals of honest and multi-faceted risk reduction, not to be placated by band-aid solutions, reforms that only delay the problem, claims that more skilled play will adequately solve it, large financial payoffs and the blinding effects of corporate partnerships with science. Settlements and distractions with smaller matters all threaten to damp down motivation for more trenchant action. In the long history of the concussion crisis there is a story, that once a society comes to know something is unsafe, those with a stake in its perpetuation prefer that people forget.

 

Emily A. Harrison, SM is a PhD candidate in the History of Science at Harvard and recently published on the history of concussion in football in the May 2014 issue of the American Journal of Public Health. See: The First Concussion Crisis: Head Injury and Evidence in Early American Football. AJPH. 104(5), May: 822-833.

Web Roundup: Accessing Assistive Technology by Emily Goldsher-Diamond

29 Janvier 2015 - 8:50pm

This month, a brief look at some new initiatives meant to erode many different barriers to access when it comes to assistive technology for people with disabilities. There exists a tendency for popular media to approach innovation in assistive technology with the kind of techno-optimism pervasive in writing about consumer technology, where the stakes are arguably lower and motivations are clearer. It is one thing to make an iPhone, for example, more responsive or with a longer battery life, in order to sell more phones; it is an entirely different endeavor when advancements in assistive technology are introduced, as they engage not only market concerns, but also health, policy and economy in complex ways.

Reuters released a video about a new prosthetic arm in Argentina that is available for a much lower price (approximately 50% less) than most nerve responsive arm prostheses. This is especially significant, as this type of prosthesis is not covered by insurance in Argentina, and developers hope its low price point might encourage a shift in policy. Animal New York reports on young inventor Easton LaChapelle’s use of 3D-printing to produce a “brain-powered prosthetic arm” for only $250. The accompanying video by Uproxx goes into LaChapelle’s mission and design process.

Just as 3D-printing appears to be changing the organ transfer landscape, so too does it seem to be gaining ground in the prosthetic sector. Companies and innovators like Open Bionics, Pink Perfect, TeVido BioDevices and William Root are all using 3D-printing techniques to produce more affordable prostheses. By making the technology more affordable, they are making their work–much of it not just dynamic and technically sound, but artful–more accessible to users previously restricted to the prostheses covered by insurance companies or what they can afford out of pocket. On top of price concerns, 3D-printing requires less time and labor, meaning that more can be produced for more users. Much remains in the way of these designs gaining ground over more common models, generally in the way of funding and distribution, but perhaps these lower-cost options can help erode the current high-cost/high barrier to entry environment.

Another democratizing move in the area of assistive technology comes from the adaption of open source principles in universal technology design. Mitsubishi recently awarded the United Cerebral Palsy (UCP) Life Labs initiative significant funding to increase and develop universal and open source design. Life Labs has partnered with iTunes U, a collaboration meant to introduce the principles of universal design in education, including K-12 and university settings. Hackaday blogs about a design team offering plans for an open source haptic robotic arm, a promising technology for people with mobility impairments. With the open source model, individual users and makers can build and modify the arm to their particular specifications. This is certainly a shift from the tightly controlled copyright model, where designs are both protected by patent law and subsequently slow and difficult to evolve.

Finally, it is worth asking whether the crowdfunding model (of sites like Kickstarter and Indiegogo) can be considered crucial to lowering barriers to access when it comes to assistive technologies. A quick search through Kickstarter reveals that many projects are made by and for people with disabilities. When funding is relocated to the maker, to the imagination and will of the designers, dreamers and innovators, agency is also shifted to spaces that are considerably more plastic, if not more democratic and accessible.

More Links of Interest:

“Science for the People” – Mosaic

“Militarizing Life” – AnthropologyNews

“Global Health Doesn’t Exist” – Limn

“Why The Theory of Everything is a Disappointing Depiction of Disability” – Slate

“Netflix’s Secret Special Algorithm is a Human” – the New Yorker

“Humans & Nature Can Co-Exist in “Cyborg” Ecosystems” – Nautilus

Annemarie Jutel’s Putting a Name to It: Diagnosis in Contemporary Society by Owen Whooley

28 Janvier 2015 - 7:10am

Putting a Name to It: Diagnosis in Contemporary Society

by Annemarie Jutel

Johns Hopkins University Press, 2011. 175 pages.

 

When we treat diagnosis as simply a medical issue, we mask the tremendous social power involved in putting a name to human suffering. When we transform phenomenological experiences into discrete labels and then treat those labels as reality, we cram those experiences into neat boxes that may not adequately fit or hold them. When we view clinical assessment and diagnostic decision-making as a sober, objective assessment of evidence, we obscure the interpretive dimensions inherent in clinical reasoning. And yet when we receive a diagnosis, it can unlock access to understanding, resources, and empathy in the face of the uncertainty of illness and even death.

Rather than balk at these issues, Annemarie Jutel, in her book Putting a Name to It, confronts the protean character of diagnosis head on. The book’s central conceit is that diagnosis is a complex phenomenon, with effects that ripple far beyond the doctor’s office. As such, Jutel eloquently issues the clarion call for social scientists to take on diagnosis as an object of analysis in its own right. In doing so, she reveals the insight and intrigue available to those willing to scratch the surface of this often taken for granted practice.

Diagnosis encompasses two related, but distinct aspects. First, we can think of diagnosis as a label, by which we classify, categorize and identify symptoms, ailments, and distresses. The label itself has power to organize experiences, determine future courses of action, open access to needed resources, and provide identities around which to mobilize politically. But we can also address diagnosis as an act, an interpretive process that unfolds in the particular interaction of the doctor/patient. Here patient testimony is focused and narrowed by the imperative to “think” through personal accounts of distress in a particular way. Meaning is imposed on disparate information in an interaction characterized by power inequality. A patient enters the interaction with a diffuse set of concerns – physical, psychological, and social – and if all goes smoothly, leaves with a tidy diagnosis. Rather than artificially parse the two sides of diagnosis – recognized categories of pathological conditions and the deliberate judgment by which these categories are affixed – Jutel discusses them in tandem. This decision trades some clarity for a nuanced, albeit messier, description of what diagnosis is and does.

To the topic, Jutel brings an unrelenting sociological imagination in order to counteract commonsense notions of diagnosis. “Diagnoses are presented as facts of nature, yet they hide a deeply grounded, socially negotiated genesis,” she writes (p. 2). Her orientation is that of a moderate social constructionist. She does not deny that people get sick, but does insist that are interpretations of these experiences are shaped by our social position, cultural milieu, and the distribution of power. For her, “diagnoses do not exist ontologically. They are concepts that bind the biological, technological, the social, the political, and the lived,” (p. 13).

Each chapter takes on a different aspect of diagnosis. The first chapter examines the social process of categorizing and classifying diseases, using an array of examples like the Diagnostic and Statistical Manual of Mental Disorders (DSM) to expose this process as interpretive and contingent. Nature doesn’t break things into discrete categories, people do, and how they do so has important social implications. Chapter 2 counters the commonsense notion of diagnoses as objective readings of facts, by showing how our construction of diagnoses are shaped by moral and cultural evaluations. Chapter 3 hones in on the practice of diagnosis, exploring the patient/doctor interaction and demonstrating how power dynamics shape the meaning making on the level of interaction. The next chapter turns to the larger politics of diagnosis, by examining the mobilization behind problematic, or contested diagnoses. Here we see how patient and lay groups assert claims to diagnoses, developing diagnostic identities and mobilizing for their recognition in the face of physician resistance. Chapter 5 turns to the selling of diagnoses by various social actors, or “engines”. This is where pharmaceutical companies rear their ugly heads as profiteers of “disease mongering”. Finally chapter 6 returns to the process of making a diagnosis by examining the crucial role of technology in constructing diagnoses.

Jutel’s analysis is sprawling, as she uses a “bouquet of examples” (p. 101) to build her arguments. She takes insights where she can find them, drawing not only from social science research, but also collecting examples from literature, memoirs, historical monographs, memoirs, her own personal experience, etc. This breadth of source material gives the book richness, but often at the expense of depth. Throughout there are moments in which she seems to skirt by potential paths of exploration. Too often the reader encounters something interesting, only to find it quickly discarded as Jutel breezes to the next topic. Indeed, the book’s strongest portions are when Jutel dives into particular cases (see her examination of the cultural and moral valences of overweight and infant death in chapter 3 or her discussion of the politics and economics driving female hypoactive sexual desire disorder (FHSDD) in chapter 5). And Jutel can be a bit vague in promoting her “diagnostic perspective”, failing to define it in an explicit way.

Putting a Name to It is hard book to pigeonhole. Part meditation, part programmatic statement, part intimate reflection, part analytical call to arms, and part sprawling literature review, this accessible book can be read differently by different audiences – anthropologists, sociologists, medical researchers, doctors, patients, the curious, etc. – with each picking up invaluable insights resonant to their particular interests. I read it as a stimulating meditation on the multiple dimensions of diagnosis. Still Jutel’s agenda is clear: to convince the reader that diagnosis warrants further investigation. Bursting with insights, the book’s true orientation is toward the future. Jutel is not interested in getting in the final word but rather raising provocative questions and suggesting opportunities for subsequent research. In this the book is an unqualified success.

 

Owen Whooley is assistant professor of sociology at the University of New Mexico.  His research focuses on medical professionals, specifically the politics of knowledge involved in the establishment of medical expertise. His book, Knowledge in the Time of Cholera (University of Chicago Press, 2013) explores how the modern American medical profession emerged out of an intellectual crisis produced by recurrent cholera epidemics in the 19th century and the struggles over medical knowledge between medical sects that followed in their wake. 

Daniel P. Todes’ Ivan Pavlov: A Russian Life in Science by Roger Smith

23 Janvier 2015 - 7:46am

Ivan Pavlov: A Russian Life in Science

by Daniel P. Todes

Oxford University Press, 2014. 880 pages.

 

It is going to be difficult for reviewers to avoid clichés about this wonderful biography – and wonderful it is, as both a work of scholarship and as a highly readable story of a truly ‘Russian life in science’. Some basic things can be clearly stated: it is the first comprehensive and thoroughly researched biography of Pavlov in any language; and it is definitive, by which I mean that anyone who remarks on Pavlov in the future without assimilating this study simply has not done her or his homework. Of course, there may be alternative views of both Pavlov as a personality and of his science, but if so, they will have had to address what Todes has to say. The biography is massively detailed, the result of more than twenty years of archival research and wider reading; there is a considerable amount of new information, along with the most thoughtful and balanced re-interpretation of his science and person. The book replaces a mass of ill-informed comment and presumption. This is needed, not only because of Pavlov’s significance within Soviet ideology and scientific culture, but also because of his public image around the world as the very model of an experimental scientist. To my mind, a biography such as this exemplifies what humanistic research has to contribute to public discussion of the place of science in the modern world. Todes has made himself fully at home in the theoretical and experimental technicalities of Pavlov’s work throughout the sixty years in which he was a formidably active and forceful scientist. Biologists and historians alike can read this volume and feel their own special interests addressed. I read it from cover to cover with unalloyed pleasure.

Just why is this so good a biography? First of all, Daniel Todes, Professor of the History of Medicine at The Johns Hopkins University, is master of his subject. Perhaps in an ideal world we would take this for granted, but with the rush to publish and with the hyping of claims to originality and significance, we cannot. There is no surface display here, rather the constant interplay of detailed knowledge and generalization, the disciplined search for a fully-rounded picture, the work of someone who is quietly confident that this is the best that can be done. No archival page remains unturned (though many Russian archives remain closed – the security services, after all, now govern the country – and they may yet, one day, yield surprises). The facts are prized but also woven into a rich narrative. Todes, I should note, is also the author of an earlier study of Pavlov’s organization of digestive research, Pavlov’s Physiology Factory (2001), and of a life, Ivan Pavlov (2000), for young adults.

The second reason for Todes’s success, as I see it, is that he intends his book to be read, and this shows in the way he has organized materials and in the uncluttered style, which involves putting the discipline underpinning his claims into the endnotes. This clarity is no minor achievement, given the labyrinthine complexities and duration of the research programs on digestive organ function and on higher brain function via conditional reflex experiments. Moreover, the authorial voice is calm, warm but clear-eyed, very necessary since the subject, Pavlov, was such a contradictory, difficult and often-enough offensive man, and since the times in which he worked were full of violence, suffering and upheaval, all of which still fosters strong feelings. If I may enter one word of complaint: there is no map of St Petersburg, though we are often told about where Pavlov was and about his heroic walking to get somewhere else. Enjoyment of the spatial dynamics is here compromised.

Then, thirdly, the book really is about Pavlov the man, about his science and about Russia, all three. It is an extraordinarily complex matter to do justice to each of these dimensions. The book is so attractive because Todes succeeds, and he does so, it seems to me, by having a large number of relatively short chapters, each developing its theme (‘The Pavlovs of Leningrad’ about the family, ‘Laboratory Revival’ about the organization of the research, ‘The Commissar and the Dialectician’ about the political context, and so on). In this way, Todes continually builds up a unified picture – it is organizationally brilliant. Perhaps some readers will baulk at the length (as, reportedly, some publishers did); they needn’t. While, certainly, the whole picture demands the whole book, the organization of chapters makes possible a quick read of a particular topic, and a number of specific elements of repetition in the book aid this, while, at least for me, reminding the thorough reader of the long-term threads, of which there are many. I think Oxford University Press should be congratulated for seeing that this is a book that justifies its length.

Pavlov has large, enduring significance as a figurehead name for the scientific worldview, for his unwavering commitment to a biological psychology for which he fiercely and ambitiously claimed he had the objective methodology: conditional reflex research. In general tenor, the contemporary neurosciences have recreated this project, both the belief that mental processes can and should be understood as brain functions and the wider faith that natural science is humankind’s only guarantee of progress towards a better life. The methodologies of the neurosciences, however, are not Pavlov’s: while research on conditional reflexes (not ‘conditioned’, a translation that long perpetuated an acknowledged mistake) had consequences in certain specific areas, already well before Pavlov’s death (in 1936), Pavlov’s claim that this was the route to knowledge of mind and brain was collapsing under the weight of its own complexities, contradictions, and ad hoc hypotheses (becoming a research program for ‘saving the appearances’, as was said about the epicycles of Ptolemaic astronomy). His research program had few followers outside Russia (the most significant exception was perhaps the work of Jerzy Konorski in Poland), even in his lifetime. The American behaviorists, with whom Pavlov shared the biological orientation and to whom he initially looked for support, found conditioning a useful technique but did not take up what was essential for Pavlov, its use to demonstrate ‘higher nervous functions’, the organization of the higher brain and, by implication, the mind. Neurophysiolgists of his generation approached knowledge of nervous functions in quite other ways; and when he was applauded at international congresses, as he repeatedly was, it was as a myth, a grand old man, astonishingly dynamic into his eighties, and not for his contemporary contribution to research. When ‘Pavlovism’ was consolidated as brain science, with large claims on psychiatry and psychology, it was under the Stalinist political system and not on the world stage. Even during his lifetime, Pavlov had penetrating Soviet critics, such as N. K. Bernshtein, the theorist of motor action, who had to put a book opposed to Pavlov into the drawer after Pavlov’s death, or I. S. Beritashvili, who maintained an alternative brain science in Tbilisi over many years. (Discussion of this, along with comment on what was happening in psychology in Russia, developments which Pavlov seemingly ignored, are things that the book does not touch on.) Certainly, Pavlov had his western admirers – W. Horsley Gantt and the Russian emigrant G. V. Anrep (both translators of Pavlov’s work), and later people like Hans Eysenck, Joseph Wortis and Jeffrey Gray. But it was under central Stalinist direction that ‘Pavlovian’ research took over in Russian and Eastern Europe; this legacy needs another book and separate assessment (a book much to be desired but not anywhere, to my knowledge, in progress).

Todes’s assessment of Pavlov’s scientific contributions emerges continuously through the biography. He thus avoids directly addressing the judgment of David Joravsky, who, in Russian Psychology (1989), declared the whole approach misdirected. As is well known, Pavlov’s research began with the studies of organ function in digestion, studies that presupposed a model of nervous control (and perpetuated the style of physiology for which Claude Bernard was famed). Pavlov was awarded the Nobel Prize for this work in 1904, just as it was rapidly being overtaken by more integrated conceptions of bodily regulation. Then, from 1903, already in his fifties, Pavlov ‘re-tooled’ (in Todes’s apt expression) for the analysis of the psychic elements in secretions, which he earlier tended to view as awkward or arbitrary disturbances, and developed the methodology of measuring salivary drops as the sign or index of higher brain processes, in terms of which, Pavlov assumed, explanation of mental functions would be forthcoming. Throughout, Pavlov viewed success in science as ‘the ability to encompass, contain, and so explain his experimental data by a limited number of basic principles’ (p. 300). His work was experiment driven, and he never clearly focused on the concepts that he brought along with his interpretive framework. Todes is very alive to that interpretive process. Though the conditional reflex research proceeded on an ever-grander scale, with more and more researchers employed, the results continued to escape Pavlov’s ability to encompass them in a clear synthesis. This remained his public goal, and optimism his public rhetoric, but private doubt there was, doubt that, with reason, put the whole enterprise at risk. We, in retrospect, can see the research program collapsing under the weight of its own complexity and ad hoc hypotheses (once again, like the Ptolemaic system, and in this respect comparable to the behaviorist program of Clark Hull at Yale).

Pavlov’s aggressive authority, and later Stalinist policy for science, held the program together, not conceptual insight. With his multiple institutional positions in St Petersburg, and by displaying his worldwide prestige, Pavlov was in a position, under the tsars and then on a much enhanced scale under the Bolsheviks, to establish conditional reflex research as a very large-scale enterprise (‘big science’). As Pavlov understood, ‘with a good method, even a rather untalented person can accomplish much’ (quoted p. 121), and he carried over a method from digestive to conditioning research which found a constructive place for, and gave training and qualifications to, many workers. It was not psychology as people who called themselves psychologists understood it, but Pavlov certainly intended his research, in due course, to constitute scientific, objective psychology. With a fierce struggle for centrally controlled resources, Pavlov emerged as the clear front-runner in the late 1920s. Party ideologues, and especially deeply-committed and able Communist scientists in his program, then conceived of the dialectical reconstruction of his theory. This Marxist possibility, his worldwide reputation and established institutional interests made him a figure of outstanding national importance in the highly centralized Bolshevik system of governance. This culminated at the 1935, elaborately prepared and lavishly dined, XVth International Physiological Congress, presided over by Pavlov, then 86, as the living face and voice of Soviet achievement. In his own mind, he stood for science, for truth and for patriotism. Perhaps fortunately, Pavlov was dead half a year later–– fortunately because there is evidence that Stalin was at long last preparing to revenge himself on this outspoken man to whom the state had allowed an utterly exceptional long leash because it suited its political interests. The Terror followed, and Todes ends soberly with a list of people, connected to Pavlov, who were eliminated.

Pavlov’s many links to medical interests were a further reason for his institutional success. His experimental style, which used precise analysis but worked with whole animals, exemplified and promoted the new scientific medicine, and indeed it came to dominate the Institute of Experimental Medicine where Pavlov had his largest laboratory (and where visitors can still see his study, not to mention the memorial statue to the hero of his work, the dog). Then, beginning before World War One with studies of induced neurosis in dogs, and very much expanding in the 1920s, he used conditioning to study individual temperament and the types of mental illness. Continuously adapting but not fundamentally changing his general excitation-inhibition model of the nervous system, he was able to suggest why conditioning work had variable, even contradictory results with different animals, and then to use his theory and results to tackle the diagnostic categories of clinical psychiatry and point out courses of treatment (restoring balance). Todes describes ‘the great appeal of Pavlov’s grand synthesis of the two basic moments at the heart of his scientific vision: his effort both to identify precise, quantitative, determined physiological laws and to encompass the intact, functioning animal. The joining to these two moments … embodied thematically in the characteristic secretory curves and the powerful idiosyncratic psyche, presented physiologist and physician alike with an impressive example of the union between experimental science and the daily complexities of medical practice’. (p. 207) We might go further and say that his scientific work was especially apt for translating into scientific terms common sense, and ancient, belief in the balance thought so central to daily moral life and health. Pavlov worked with animals, to be sure, but, like Darwin, he had boundless imagination for argument in a circle – for an evolutionist, a constructive circle, from humans to animals and from animals to humans. Pavlov, to be sure, was naïve in his anthropomorphism, just as he was naïve about philosophy, about social science, about politics, and about human relations, but this very naivety permitted ambition for science on the grand scale.

Any assessment of Pavlov’s science is inseparable from assessment of his scientific style, and this style was inseparable from the man. Pavlov was an extraordinary character, a deep individualist, by any standards. Todes’s rich enjoyment of this, his unmoralizing but not uncritical engagement with the character, is absolutely central to the pleasure of the book. Pavlov, till the end of his life, was fantastically physically and emotionally dynamic, swimming, walking (at high speed), playing his beloved gorodki (a game throwing heavy sticks), utterly self-centered, demanding that everyone around fit to his plans – of research or recreation, ferociously and rudely competitive, exploding in uncontrolled (or uncontrollable) outbursts of temper at contradiction, disagreement or even just losing a game, emphatically confident in public speech and in the process grossly rude about other people or other approaches to science. Some readers will warm to the grand old man, often charming, organizing everything about him to suit his admirable purposes; others will see a dictator, hardly conducive to good science, company to be avoided. Todes keeps the kind of balance Pavlov himself lacked. Pavlov, who had a staggering memory for experimental facts, continuously sought to interpret and to integrate research data, the endless records of salivary drops formed under endlessly varied conditions, to achieve a synthesis. But he also speculated wildly about brain functions, strongly interpreted data to suit his current view, and lambasted those who had the temerity to argue otherwise. He was the undisputed boss. A balanced picture is possible, however, because Pavlov could and did change his mind on particular interpretations of experimental results (his acceptance of ‘mutual induction’ of excitation and inhibition is particular instructive), and he did modify reactions to people after initial outbursts. He never wavered, though, about science as the path to the human future or about his central place in bringing that future about.

The book cover reproduces the very late portrait of Pavlov by his friend, the artist M. V. Nesterov, which movingly shows the old man with his fists firmly clenched on a table, with the world of the biological research station, Koltushi (which he created with large government support) emerging behind him. He hoped at this research station to realise vastly ambitious plans to study the interaction of heredity and environment, with a view to giving humanity the power to control its future. But his scientific plan was inoperable and the research station, though large, not completed. Throughout his life, he saw both individual character and events flowing from the interaction of order and correctness (pravil’nost’) and randomness (sluchainost’) – and, as Todes wryly remarks, he attributed to things that went wrong, like the Revolution, to randomness, and things that went right to his own orderly capacities. His research sought a law-like mechanistic form of behavior; but he exercised his own will as if it could and should know no bounds. In connection with this, we may note that the biography gives a notably sensitive portrait of Pavlov’s wife, Serafima Vasil’evna, who, from being a young woman with hopes of her own, became devoted to Pavlov. She retained a deeply religious sensibility in the face of his atheism and dignity in the face of his aggression. She maintained domestic support, but she and Pavlov separated emotionally when he started an intimate and intellectual relationship, which lasted through the last twenty years of his life, with Maria Kapitonovna Petrova, who became his closest colleague in his science.

There are biographies about well-known lives that have little new to say, though they may have a new slant or address a new audience. This biography has a great deal new to say: it makes clear a host of things connecting Pavlov’s life and science that were previously unknown or obscure. The quality and detail of the historical research is of paramount importance, as it is the means to overcome both simple ignorance of the archival sources and more complex mythology and ideological appropriation. The research is apparent, for instance, in the subtle account of Pavlov’s transition from the work on digestive organs to work on the brain, adapting the surgical and experimental techniques and management skills developed for the former in order to focus on the psychic factors themselves. Pavlov always described himself as a physiologist, yet he did not doubt that the final goal of human self-interest was the psyche, the subjective world. Thus he did have large ambitions for psychology, though for psychology as he understood it and not as almost anyone else did, and he seems to have had strikingly little contact with people who called themselves psychologists (though, in the 1920s, these people were effectively competing with the government for the funding appropriate for recreating psychology as a Marxist science). Pavlov’s naivety about and antagonism to philosophy, very much part of his personality, made his science appear crudely materialist, whatever his highly developed personal morality (his moral dignity, or dostoinstvo) and interest in the arts. But he was no materialist and saw knowledge of the conditions of subjectivity as the ultimate intellectual goal. In the 1920s, he had psychological interests in character typology and psychiatric diagnosis, and he paid attention to American behaviorists and, later, to Gestalt psychology (to which Pavlov responded because it seemed to challenge his whole approach to the brain).

Pavlov’s relationship with the Bolsheviks has been a vexed issue – emotively, politically, and ethically. I think it is put to rest here. Todes tells a clear, and clearly validated, story, in which the key is Pavlov’s unwavering scientism, in general as a worldview and in particular as the legitimating force of his life’s work. Pavlov was a typical liberal and bourgeois of his time, willing to support constitutional government but utterly opposed to ‘the barbarians’ who he saw take power late in 1917. His faith was science itself, and politics he did not comprehend unless it was governance based on science and dostoinstvo, moral dignity. His research program had no less an ambition than to give to humanity the biological knowledge he believed would underpin rational policies, including the regulation of breeding. So, then, when the Bolsheviks, following Lenin’s instructions, began to fund his research, which they eventually did on a scale unlike any other comparable research area, he was forced to concede that the government recognized the value of science and, hence, called for his support. In addition, Pavlov was deeply and unquestioningly patriotic, and he thought this required him not to criticize the government, when, as he understood it, the country had need of support. Todes sensitively characterizes Pavlov’s acute self-consciousness of personal moral dignity. Where this was not too compromised, he found ways to work with Bolshevism. It was a balancing act that caused Pavlov much wavering and doubt. He did openly criticize the leadership in ways impossible for others, sought to defend family and colleagues from attack, and he did offer public support for the regime. When a number of scientists who were Communists tried to push his research in directions, which they thought (not unreasonably, it seems to me) conducive to dialectical understanding, Pavlov, as ever, judged this according to the capacity of his co-workers to produce factual results. In every way, he found analysis easier than synthesis (very evident in the English translations of his works). As the public figurehead for the government’s support of science and a well-known critic of Soviet politics, a man who was likely to use a public platform for criticism if not insult, Pavlov was closely monitored. Misfiled informers’ reports (which would otherwise still be in closed archives), discovered by chance, give a glimpse of the kind of daily information in the hands of the NKVD (security services).

Todes also puts to rest the question of Pavlov’s religious convictions. His activity in defending believers led to the story that he was himself a closet believer. Not at all – his atheism was firmly formed in the 1860s and he was impatient, when not rude, about any claim to knowledge, which was not scientific in form. Yet the freedom to express belief became something of a touchstone for him, inseparable from his belief in individual moral dignity. He also accepted elements of religious ceremony as part of traditional Russian life. On the basis of his archival work, Todes concludes that Pavlov’s commitment to trying to secure freedom from persecution and death for those who asked for help, as people did, was larger than has been appreciated.

No review is going to give adequate notice of the wealth of information, which weaves the science, the person, and the staggering historical events into a whole cloth. But the cloth is whole. Concern for such wholeness, for justice to science, to the man, and to the times alike, is a labor of intellectual love. Wonderful.

 

Roger Smith, PhD, is Emeritus Reader in History of Science, Lancaster University UK, and associate of the Institute of Philosophy and the Institute of Psychology in Moscow, Russia, where he now lives. Most recently, he is the author of Between Mind and Nature: A History of Psychology (London: Reaktion Books, 2013), and Free Will and the Human Sciences in Britain, 1870-1910 (London: Pickering & Chatto, 2013). His current research is on the history of touch and movement senses; his Mary Whitton Calkins Lecture to the APA, Washington, 2014 can be viewed here.

Cynthia Willett’s Interspecies Ethics by Eva Giraud

21 Janvier 2015 - 5:59pm

Interspecies Ethics

by Cynthia Willett

2014, Columbia University Press, 220 pages

 

In Interspecies Ethics Willett confronts a thorny issue head-on: what would a non-anthropocentric ethics look like in practice? This question has been grappled with by thinkers from a range of conceptual perspectives, from posthumanism (e.g. Cary Wolfe, Rosi Braidotti) and feminist science studies (Donna Haraway, Isabelle Stengers, Vinciane Despret), to neo-vitalism (Jane Bennett) and more-than-human geographies (Sarah Whatmore, Emma Roe, Jamie Lorimer). Whilst these non-anthropocentric perspectives have productively de-centred the human as the locus for ethics, there have been concerns about what could provide a replacement ethical grounding. Posthumanism in particular has faced criticism for contesting humanism without offering an alternative ethico-political framework for combatting exploitation (at least not one that seems practicable). It is this task of developing a work-able alternative, which is at the core of Interspecies Ethics.

Broad Themes

Before going into depth about the specific ethical arguments Willett makes, it is helpful to first explain how her overarching approach navigates two key difficulties that have faced authors attempting to reconcile non-anthopocentric theories with animal ethics.

The first difficulty relates to the way these theories have explicitly attempted to distance themselves from a social justice agenda, often characterized as being both anthropocentric (due to liberal-humanist notions of subjective autonomy still functioning as the base-unit for ethics) and anthropomorphic (by inferring that non-humans are only worthy of ethical consideration if they are treated as ‘humans in fur suits’ (Haraway, 2008: 67)). In their totalizing desire to condemn certain relations between humans and non-humans as ‘exploitative’, moreover, animal ethics perspectives are seen as undercutting their own aims, by appealing to human exceptionalism and establishing humans as ‘protectors’ of untouched nature, whilst ignoring the vibrant forms of sociality that exist between species.

Willett attempts to circumvent such criticisms by drawing on already-existing examples of ethical negotiation that occur within mixed species communities (from, often destructive, human-elephant social networks to symbiotic micro-ecologies between squirrels, trees and fungi). These examples of how inter-species living is negotiated in practice are then used to generate insights to inform future ethical negotiations; like Haraway, therefore, Willett begins from a bottom-up perspective, learning from practice, rather than formulating a set of abstract ethical rules from a bird’s-eye view. In Willett’s own words, her approach derives its ethical values from an exploration of ‘the affect laden communicative exchange that forms the motivating and intelligent ground for mutual response and responsibility’, and is decisively not an attempt to craft a ‘systematic moral theory’ (140). Where she departs from Haraway (perhaps due to differences that Willett herself does not acknowledge, about their contrasting perspectives on what constitutes ‘exploitation’), is in using these examples to inform a series of guidelines to actively challenge what she describes as ‘the sharply vertical biosocial gradients’ – or hierarchical social relations that occur between species – in contexts such as ‘factory farms and animal research labs’ (141). Not all inter-species relations, in other words, are to be celebrated and some form of ethics is still needed to interrogate relations that are potentially oppressive.

The second, related, difficulty facing animal ethicists pertains to the epistemological ‘flattening’ that occurs within certain non-anthropocentric theories (particularly neo-vitalist and speculative realist approaches), which erode qualitative distinctions between actors; the political concerns of inanimate objects, plants, animals and humans, for instance, are placed on a level playing field. Whilst this ‘flattening’ undermines human exceptionalism, and the notion that other actors are resources for the benefit of humans, it also threatens to take the heart out of ethics by claiming parity between – to give an infamous example – ‘the udon noodle and the nuclear warhead’ (Bogost, 2012: 30). Willett makes the decision to avoid this problem by focusing on: ‘a political ethics centred on communicative sociality’ (66), and pragmatically bracketing to one side debates about ethical engagement with non-animal actors.

Chapters: Willett’s Ethical Layers

Varied forms of ‘communicative sociality’ are explored throughout the text, in order to provide insight into a practical ethics. Willett’s analysis culminates in the penultimate, reflective, chapter of the book, which offers a series of ‘layers’ that, she argues, can ground a non-anthropocentric ethics:

Layer 1: Subjectless Sociality

Layer 2: Intersubjective Attunement

Layer 3: The Biosocial Network as a Liveable Place or Home

Layer 4: Animal Spirituality and Compassion

(2014: 135)

Each chapter provides a series of specific insights about how to develop an ethics that traverses species, taking inspiration from existing forms of inter-species sociality.

The first ethical ‘layer’ is outlined in chapter 1, ‘Can the Animal Subaltern Laugh?’, which calls for less of a focus on animal ‘suffering’ and ‘vulnerability’ and more of an emphasis on ‘community life and biosocial networks that exceed individual agency’ (37). In making this argument, Willett joins the large chorus of voices who have claimed that the possessive individual is the wrong unit for grounding an ethics, both politically speaking (due to the problematic humanist lineage of this form of subject) and ontologically speaking (because the individual is never truly autonomous but constituted by broader social networks). To illustrate this subjective, and – more to the point – trans-species inter-dependency, Willett draws on historical examples of mixed human-animal communities whose participants are co-dependent on one another, as well as contemporary ethological examples of co-evolution. This argument opens up space for non-humans to enter the ethical community as co-workers; work, however, is not main the vector that Willett uses to explore how trans-species solidarity could occur, and instead she focuses on instances of play.

The shared affinities between species, which Willett delineates through discussing how different species play together, are consolidated in her second chapter (or layer), ‘Palaeolithic Ethics’, where she draws analogies between anarchist movements (with a focus on Occupy) and ecological communities. This comparison is a little underdeveloped (Willett’s understanding of ‘autre-mondialisation’ would benefit from unpacking, for instance) and analogies between animals and anarchists occasionally verge on an essentialism that simplifies autonomist praxis. The exploration of how non-hierarchical, collaborative, forms of political organisation can occur outside of a liberal-humanist framework, however, does open up some valuable questions. To develop insight into this process Willett focuses on ecologies that are co-constituted by multiple species, which she argues provide a concrete instance of the ethics of flourishing that has been hinted at in a range of animal studies texts (from early ecofeminist work to Haraway’s When Species Meet (2008)). Flourishing has been a notoriously difficult concept to pin down; as Cary Wolfe notes in Before the Law (2013), debates about flourishing often result in an epistemological rabbit-hole because some forms of flourishing undermine others (what about predators? Or parasites? Or deadly viruses?). Willett, however, argues that these debates often resolve themselves in practice: ‘not in abstract laws constructed by intellectuals or political elites but in the social intelligence of animal societies’ (69). It is through these practices, she argues, that we can derive a practical sense of ethics, and learn how to flourish within our wider ecological communities.

The third chapter, ‘Affect Attunement’ extends this argument, by contributing to the – rapidly expanding – body of work that explores the potential for tacit, embodied interactions to support trans-species communication at a non-linguistic level. Many of these arguments share parallels with work within feminist science studies, notably Vinciane Despret (2013), though Willett, unfortunately, does not substantively explore this literature, drawing on key concepts without fully situating them in their disciplinary context (more on this below). Her distinct contribution, however, is to focus on ‘affect waves’ that spread through communities, rather than affective relations that occur at the micro-sociological level. This chapter, therefore, contains perhaps the most concerted attempt to understand how affective relations between species can extend the concept of agency beyond the liberal individual and – in doing so – create space for animals to be part of the ethical community.

Thus far, Willett’s three ethical ‘levels’ are focused on what she terms ‘horizontal’ levels of engagement between species, by they through work, play, co-evolution, ecological co-dependency or affective relations. In the final chapter, though, she focuses on a ‘vertical’ axis of communication, exploring relations that occur when species strive for some sort of ‘higher purpose’ that goes beyond satisfying their immediate needs. Instances of empathy and compassion between species are used to illustrate this dimension of ethics, although Willett also hints that some form of striving towards the sacred could form a further point of affinity.

Potentials for an Interspecies Ethics   

Although Willett’s ethical layers do contain some interesting insights, they simultaneously crystallise her text’s ambition and its weakness. On the one hand it is refreshing to see a text that makes a concerted attempt to craft a complex and – more importantly – concrete framework for translating non-anthropocentric theories into ethical action (especially in light of concerns that this body of work makes concrete action difficult). On the other hand this ambition has led to Willett drawing on an incredibly wide range of disciplines to bolster her arguments, which include neuroscience, child-development studies, epigenetics, evolutionary theory, phenomenology, psychoanalysis and posthumanism. The problem is that there is little acknowledgment of the paradigmatic differences between these perspectives, differences that urgently need to be worked through if this ethics is to be conceptually coherent.

Early on in the text, for instance, Willett is critical of research with bonobos that was designed to delineate differences between human and animal learning; resonating with Haraway and Despret’s, respective, analyses of early primatology, she argues that ‘many of the actual experiments in the film in fact suggest surprising parallels between humans and other primates, not metaphysical differences’ (46). This pertinent point is then slightly undermined on the next page, where she argues: ‘experiment after experiment establishes that other animals are more like us than we ever imagined’ (47). Her treatment of experimental science, therefore, gives the unfortunate impression that the text criticises research that reinforces human exceptionalism, whilst embracing work that is sympathetic to its political project. This issue also affects the way Willett engages with insights from different disciplinary contexts; potentially irreconcilable differences between neuroscience and psychoanalysis, for instance, are not addressed, because the text focuses purely on elements from both disciplines that erode human exceptionalism. To strengthen the book’s arguments, it would have been helpful to see some further acknowledgement – if not some form of working through – of these epistemological differences.

What is also lacking from the book, which could have strengthened both Willett’s analysis of experimental science and engagement with contemporary non-anthropocentric theories, is a more sustained engagement with science studies itself. A more in-depth engagement with science studies would have helped maintain greater critical parity between the varied scientific examples drawn on throughout the text. A more rigorous engagement with the science studies literature that is drawn on would also be welcome, because – at present – thinkers such as Karen Barad and Isabelle Stengers, as well as Haraway herself, are not situated in their context, which means their arguments are sometimes misrepresented.

Willett’s use of Haraway, for instance, focuses on her playful use of ‘indigestion’ as a metaphor for the moral quandary posed by meat consumption, but in doing so Willett misinterprets Haraway’s – often critical – stance towards animal ethics agendas. In drawing on Haraway to bolster her own criticisms of the agricultural-industrial complex, Willett suggests that a ‘visceral register might serve well to prompt carnivores to question whether their dietary habits can ever be unambiguously right and morally “clean”’ (114). This quote, however, is divorced from a context in which Haraway argues that no form of eating is morally ‘clean’ or devoid of killing of some form. For Haraway indigestion does not signify the immoral nature of meat consumption, but evokes the necessity of ‘staying with the trouble’ and navigating complex ethical issues on a case-by-case basis rather than casting totalizing moral judgements. This quote is actually part of a broader argument against veganism, which argues that criticisms of meat consumption shut down forms of relating (indeed, this argument is one reason why Haraway has been so criticized by thinkers from critical animal studies; see Pedersen, 2011).

The decontextualized use of certain theories is sometimes compounded by the text’s playful use of language, which occasionally undermines its theoretical precision and clarity. Stengers’ cosmopolitics is frequently used, for instance, to describe the trans-species cosmopolitanism or ‘polite encounters’ between species that occur in Willett’s examples (73). Stengers makes clear, however, that interpreting her cosmopolitical proposal as ‘inferring that politics should aim at allowing a “cosmos” a “good common world” to exist’ is a ‘misunderstanding’ (2005: 995). Cosmopolitics is instead about making difficult, context-specific, decisions ‘in the presence’ of those who might be the most affected by them (Stengers’s own example being researcher-laboratory animal relations), and trying to create space for these actors to shape the production of knowledge. The difficulty is in actually creating these conditions and much of the productive work in animal studies has been in exploring ways of doing this, including a burgeoning body of work about animal affect that could be brought into productive dialogue with Willett’s arguments (for an excellent overview see Latimer and Miele, 2013).

Despite these issues Interspecies Ethics is an interesting and often insightful text. Regardless of where one stands politically in relation to animal ethics (and, for the purpose of openness, I should state that I am sympathetic with Willetts’ politics), it is refreshing to see an animal studies text that maintains such a firm – and explicit – ethical commitment. This commitment is especially welcome in a field that is often cautious about adopting a firm political stance, due to fear of appearing dogmatic, totalizing or essentialist. The text’s ambition, however, is also its weakness, and the book would be enhanced by a more in-depth engagement with both the epistemologies and the theoretical insights of feminist science studies scholars in particular. Such an engagement would enable the text to more fully meet its aims of realising a work-able non-anthropocentric ethics, whilst doing justice to the range of materials it draws upon.

 

Eva Giraud is a lecturer in Media, Communication and Culture at Keele University. Her research explores the dynamic between on- and offline activism, with a focus on the work of environmental, anti-capitalist and animal rights activists. This feeds into a broader interest in cultural theory that contests existing relationships between humans, animals and the environment.

 

References

Bogost, I. (2012) Alien Phenomenology. Minneapolis: University of Minnesota Press.

Despret, V. (2013) ‘Responding bodies and partial affinities in human-animal worlds’. Theory, Culture & Society. 30(7-8): 51–76.

Haraway, D. (2008) When Species Meet. Minneapolis: University of Minnesota Press.

Latimer, J. and M. Miele (2013) ‘Naturecultures? Science, affect and the non-human’. Theory, Culture & Society. 30(7-8): 5–31.

Pedersen, H. (2011) ‘Release the moths: Critical animal studies and the posthumanist impulse’. Culture, Theory and Critique. 52(1): 65–81.

Stengers, I. (2005) ‘The cosmopolitical proposal’. In Latour B & Weibel P (eds) Making Things Public: Atmospheres of democracy. Cambridge, Mass: MIT Press. 994-1003.

Wolfe, C. (2013) Before the Law. Chicago: University of Chicago Press.

Ebola and Localizing the “Global Other” in the United States by Mark Grey

16 Janvier 2015 - 7:36am

The outbreak of Ebola in Western Africa has spurred a great deal of anxiety among state and local public health officials in the United States. The initial arrival of the disease in the United States with a Liberian immigrant in Texas exposed the shortcomings of a response system that relied heavily on guidance and protocols from medical organizations emphasizing protective gear, isolation protocols, standardized questions, and other operational and technical details, but doing little to understand the patient as a cultural being. It also showed how even hospitals designated as “Ebola-ready” might have been able to treat the disease, but not the patient. The result was the nation’s first death from Ebola—a West African man who was first turned away from a thorough examination due in part, we suspect, to limited skills in providing culturally responsive services.

While the media focused on the handful of Ebola cases that have surfaced in the United States and provided a platform on which to debate the wisdom of mandatory quarantines for those potentially exposed to the virus, the crisis hit our nation in the few weeks prior to important mid-term elections. Ebola was no longer just a public health issue. It became highly politicized, driving much of the discussion towards partisan rhetoric that fed medically unfounded and alarmist ideas about preventing non-citizens (that is, Black Africans) from bringing a plague to our shores. In previous elections, candidates were often accused of being “soft on crime.” In the 2014 mid-term elections, candidates were accused of being “soft on Ebola” and “putting our nation at risk.”

Despite the political and media-driven discourse about Ebola, cross-cultural health specialists and medical anthropologists viewed the disease from an intensely human perspective in real terms at the state and local level. Which immigrant populations and tribal groups were more vulnerable than others to Ebola? How was the disease linked to migration patterns of immigrants between West Africa and diaspora countries like the United States? What cultural patterns contributed to the spread of Ebola, and which could also help control it in an outbreak in the U.S.? What could we learn from the Texas experience from a cross-cultural health perspective to better prepare for the arrival of the virus in other hospitals and immigrant communities throughout the United States?

After Ebola arrived in the United States, we believed—naively—that the above questions were being widely discussed among state and local public safety and health officials around the nation. Instead, over the course of the past few months, we found reluctance and even resistance to discussing the Texas Ebola case from a cross-cultural health or medical anthropology perspective. To us, the case in Texas provided a classic example of how epidemiological models and protocols can sometimes remain aloof to, or neglectful of, the cultural aspects of disease transmission. We have heard many epidemiologists and physicians confidently state that culture and ethnicity do not matter in this case, and that everyone is equally at risk from the disease. Perhaps even more alarming around the country is that the very sub-populations that are most vulnerable to the virus—and a potential “gateway” population to contract the disease in the States—were not recognized or acknowledged. West African immigrant populations, as well as the health workers that care for Ebola patients, remain the two groups of people at greatest risk for contracting Ebola in the United States. However, the numerous small and large ethnic communities of West Africans in the United States remain largely unknown to many medical providers, health departments, and emergency planners. To make matters worse, few of these professionals realize that many of these West African immigrant populations themselves have been requesting assistance from public health professionals to educate their communities about Ebola and keep their own populations safe from potential spread of the disease through visitors arriving in the United States from back home.

We work with immigrant, refugee, and minority populations every day, and we respect that many of our colleagues in other fields may not be familiar with all the cultural sub-populations in their communities. But in the initial response to Ebola, many of our colleagues around the country were shocked to learn that some 500,000 West African immigrants live in the United States, including significant populations in “unlikely” states such as Iowa or Rhode Island. Most importantly, from a cultural standpoint, these individuals maintain very close ties with family and friends in the Ebola “hot zone.” Many continue to have relatives and extended family members visiting them in the United States on a frequent basis.

From our perspective, this scenario exposed the over-reliance on medical protocols that screen for diseases in individuals, but often overlook the bigger picture of diseases in families and cultural communities. Patients are too often viewed as nameless “vectors,” not members of human cultures. In our subsequent efforts to inform this process, we have emphasized the basic anthropological concepts of “low” and “high-context” cultures (Hall 1976) . Clearly, the perspective, experience, and expectations of many of our colleagues in epidemiology around the country emerged from a “low-context” perspective that focuses on individuality. Disease screening too often looks just at the individual patient, and ignores broader family and community issues that are important to understand from a “high-context” group-oriented cultural standpoint. This assumption played itself out perfectly when the Centers for Disease Control announced to the world that the Liberian immigrant first diagnosed with Ebola in Dallas had only been in the company of, and therefore only potentially exposed, a handful of people living in his fiancé’s apartment. Within days, however, the high-context nature of Mr. Duncan’s culture revealed itself, and ultimately public health workers had to track up to 100 individuals for potential exposure from a single patient. (The public health implications for disease surveillance and control within group-oriented, high-context West African communities were also seen recently in Nigeria, where disease trackers had to investigate up to 1,000 potential contacts for every one patient with Ebola.) Likewise, the initial Ebola screening protocol in the United States focused almost exclusively on whether an individual patient had traveled personally to West Africa and did not take into account the fact that many West Africans in the U.S. live in closely knit neighborhoods and dense households, as is common with most “high-context” cultures around the world. The screening protocol did not account for the fact that a person might never have traveled to West Africa, but could have been exposed to an illness that was brought recently from an international visitor who had arrived in the household.

We believe part of the disconnect between these cultural experiences is exacerbated by the nagging insistence to frame Ebola as a disease of the “Global Other” and to assume that even if some of these people live in our communities, they didn’t bring their “otherness” with them. In many respects, Ebola provides Western health officials with a scenario that accentuates racial and ethnic logic about disease and death. In the view of many Western providers, there are clear germ theory reasons why West Africans are victims of Ebola. These include, for instance, that the disease is most likely transmitted by infected bats that bite animals. This bush meat is then hunted and eaten by rural West Africans, who then migrate to rapidly growing mega-cities with significant overcrowding in their peri-urban shantytowns, where Ebola spread like wildfire from these infected humans. Many West Africans also routinely practice cultural rituals that can help spread the disease as well through body fluids, particularly when cleaning dead bodies of relatives before burial. Numerous West Africans, on the other hand, view the disease through a very different cultural lens. They are much more likely to believe the disease was deliberately introduced to certain African communities as a form of population control by the Western governments or companies as a way to ultimately gain their land, cocoa plantations, and mines. Others may attribute it to curses, evil eye, or negative energy being put upon them by enemy tribes or families, particularly if they are from ethnic populations with whom they fought during recent civil wars. Even West African health workers have been attacked and run out of some villagers, because they are sometimes viewed with suspicion that they are there to steal the patients and harvest their bodies for use in organ trafficking criminal networks.   In light of historical, colonial, and current affairs in West Africa, it is not hard to understand the cultural context from where these health beliefs have come.

Our colleagues shake their heads at these perspectives and behaviors. But the good news, they argue, is that these behaviors are confined to Africa and couldn’t show up here. Without saying so directly, some of medical providers we have spoken with suggest that the West Africans who come to the US are the lucky ones who have escaped the backwardness of Africa and can start anew. They have stopped being “African” and are now simply “Black.” Surely, these lucky few have seized upon their new opportunity to leave behind the less desirable aspects of their cultures once they arrived in our country. Of course, the acculturation process is as strong one, but immigrants and refugees don’t entirely stop being their cultural selves when they cross any border.

We recognize in this discourse a contrast between the well-intentioned efforts of public health colleagues as they encounter the “stubborn culture” of cultural newcomers. Crystal Biruk summed up critical aspects of stubborn culture this way: “Taken in bulk, the widely circulating conspiracy theories, violence, and rumors in times of health crises (notably not unique to Africa) that so effectively capture headlines bolster our imaginary of Africans as superstitious, in need of help and education, and ignorant of the wonders of science.”

It could be argued that many Western medical professionals are also members of a “stubborn culture.” It is a culture that is based too often on clinical science over the social science of anthropology, and proceeds from its own set of cultural assumptions. As anthropologists, our job in the past few months has been helping members of both stubborn cultures come together, to reframe the experience and expectations of both sides, to make the knowledge that emerged from the process useful to one another. We had no doubts that many West Africans in the United States wanted to work with public health officials, and we definitely knew that public health and emergency response professionals have a vested interest in protecting everyone living in their communities, but both sides need help getting past their previous experience, suspicions and expectations.

Indeed, well before Ebola drew the attention of most Americans, the disease was ravaging West African communities. Many West Africans in the United States have already lost loved-ones to the virus. In response, many are forming organizations in immigrant communities here to raise awareness about the disease, generate funds, and mobilize resources. In Iowa, for instance, members of multiple West African countries and tribes got together to form a group called Africans in Iowa Fighting Ebola (AIFE). However, around the country, members of the media and politicians have largely ignored these organizations and requests for assistance, that is, until Ebola came to America. This just confirms the cynicism of many in West African immigrant communities that the West never really cares about anything in Africa until it affects them directly; this is perceived as tied to a need to provide the best care to white people. (This view has been further reinforced among many West Africans, given that the only two Ebola deaths in the U.S. were among black men, while the white healthcare workers here have all survived.)

Diseases like Ebola expose the cultural and economic fault lines that already exist in a global society. It feeds into the thinking of many health and emergency planners that as long as we can contain the disease in Africa, Americans can be sparred a major outbreak. This can be seen in the discourse about the cultural and political logic of quarantine and travel bans, despite the science to the contrary and the real need for health care providers to be able to get easily to the “hot zone.” For both West African immigrants in the United States and the public health and emergency management power structure, Ebola simply exposed “pre-sorted” social divisions. But these social divisions far exceeded ‘local’ versus ‘global,’ black versus white, or immigrant versus citizen. In cultural terms, the thousands of miles between the U.S. and West Africa may comfort Americans, but for the Liberians, Sierra Leoneans, and Guineans, the geographic distance is simply an inconvenience that is easily overcome. Interestingly, many West Africans in the U.S. are finding themselves in the culturally awkward position of requesting assistance from local public health officials to quarantine or isolate their own relatives who have recently come from the homeland to here. However, they simultaneously request support against bias or discrimination against West Africans because of Ebola.

From our work connecting West Africans with public health, emergency management, public safety, and other professionals around the United States in the past few months, we have been emphasizing the need to “partner” to present a common message to the public, curtail negative stereotyping about Africans, share resources, and, most importantly, emphasize and engage the West Africans as the “front line” against Ebola in this country. Instead of ignoring the West African community, we are encouraging agencies to embrace them and engage their energy, concern, and intimate knowledge of Ebola in an effort to prevent its spread in the United States.

We have now seen this model of culturally responsive community engagement in emergency planning take effect in our own state of Iowa. As cross-cultural public health specialists and applied anthropologists, we have been actively providing training to state agencies and local organizations on West African immigrant populations, demographics, and cultural patterns. We have also helped identify the numerous Liberian, Sierra Leonean, and Guinean communities in our state and their association leaders, so that state organizations can connect with these folks themselves. Ultimately, we were able to bring together key players such as the Iowa Department of Public Safety, the Iowa Department of Public Health, local public health agencies, and the heads of multiple West African immigrant associations and Ebola organizations in a collaborative effort. Some of the activities that are being undertaken now by these state and county agencies include Ebola education for immigrants; outreach and partnership from the state agencies at the highest levels with the immigrant heads; meetings between state physicians, epidemiologists, and the West Africans; immigrant association surveillance and support of their community against the spread of Ebola; and ongoing identification of West African needs and concerns about Ebola in the state. Best of all, these activities are being undertaken before, rather than after, any sporadic Ebola case turns up in Iowa.

We suspect that one concern in replicating these kinds of community partnerships in other states will be how diplomatically African immigrants can point out the cultural shortcomings of the Western disease control and response protocols preferred by their epidemiological colleagues. The Africans have their own narrative that empowers and scares them. Their narrative makes a mockery of current and proposed efforts to slow the spread of Ebola of “closed borders” in the hot zone and current and proposed travel bans and quarantines in the United States. Numerous West Africans that we have met in the United States have spoken openly about their concern over what can only be described as “Ebola refugees” – people fleeing West Africa not because of war or famine, but because of a deadly disease. They report many cases of families bribing their way past border guards in the hot zone, acquiring passports from other West African countries, flying out of airports in Europe or other African countries in order to get to the United States, and even taking Tylenol to keep low-grade temperatures under control long enough to get past airport screenings.

The competing narratives of control and response, versus how easily some West Africans can bypass Western protocols, will no doubt lead public health and safety professionals to blame the Africans’ cultural practices for the failure of Western medicine to curtail the disease around the world. They will note how placing family and tribe over everything else can ultimately put the greater society at risk. What we have seen, however, is that instead of welcoming cultural knowledge about how people get around our surveillance systems, or understanding how Western medical protocols need to be enhanced in order to take into account cultural patterns of the target populations they are meant to protect, often threatens or scares some in the emergency response field. These professionals are often more comfortable being operators of safety equipment, wearers of personal protective gear, or readers of closed ended questions, because that is far easier and less complicated than understanding humans as cultural beings. Ebola in America has helped expose the critical need to engage medical anthropologists and cross-cultural health specialists as partners, along with physicians, epidemiologists, and the immigrants themselves, in the urgent need to prevent the further spread of Ebola. These kinds of partnerships will become increasingly important not just to win the battle against Ebola in West Africa and beyond, but to address future pandemic threats in an age of unprecedented globalization.

 

Mark Grey is Professor of Anthropology at the University of Northern Iowa. He is also founding director of the UNI New Iowans Center. Michele Devlin is Professor of Global Health at the University of Northern Iowa. She is also Founding Director of the Iowa Center on Health Disparities.

 

Works Cited

Crystal Biruk. (2014). Ebola and emergency anthropology: The view from the “global health slot.” Somatosphere. http://somatosphere.net/2014/10/ebola-and-emergency-anthropology-the-view-from-the-global-health-slot.html

Hall, Edward T. (1976). Beyond Culture. Anchor Books.

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