While conducting ethnographic fieldwork on indigenous political organizing in northwest Guatemala in the mid 2000s, I encountered, quite by accident, an apparent epidemic of Bell’s Palsy—an illness involving the paralysis of one half of the face, known locally as derrame facial (facial stroke) or parálisis facial. After conversing with sufferers, I began to wonder what their condition and the prevalence of cases might reveal about how marginalized Guatemalans experienced social life after decades of injustice and reactionary violence in the midst of a failing democratic transition.
US clinicians define Bell’s Palsy as a temporary paralysis of one side of the face caused by trauma to the seventh cranial nerve. Researchers in Minnesota found that the condition affected 20-30 in 100,000 people. Although there are few identified risk factors, pregnancy and advancing age are understood to play predisposing roles. Central to the dominant US medical model of facial paralysis is a bodily trauma that causes the cranial nerve to swell against the narrow and bony fallopian canal, affecting all functions associated with the seventh nerve: muscular movement of the neck, forehead, and face (including its expressions); secretions of the lower jaw; tear duct and salivary gland expression; taste; and outer ear sensation. Although the exact cause is often undiagnosed the types of injury commonly understood to produce Bell’s palsy include wounds, blunt force, broken bones in the face, injuries to the brain stem, tumors—specifically acoustic neuroma—and cysts, as well as infection and autoimmune disorders. The lower halves of the faces of those afflicted with Bell’s palsy are usually swollen and one side of their mouth droops down, as if they were smoking an invisible pipe. They have difficulty eating, closing their eyes and mouths, and controlling their facial expressions.
This purportedly universal biomedical description—“biomedical” in that it focuses exclusively on the bodily causes of disease, pathophysiology—belies its origins in specific studies with distinct populations, and erases a potentially heterogeneous set of “biomedical” practices and definitions. This fairly standard description has a wide circulation, and helps many clinicians—in and beyond North America—to identify cases and treatments. I interviewed a doctor in Huehuetenango who repeated this medical definition nearly verbatim. However, this authoritative description elides the experiences and meanings associated with derrame in the rural department of Huehuetenango where I worked. Most cases that I encountered corresponded with intense frustration and emotional trauma, although there were several cases that corresponded with unexpected and uncontained alegria (usually translated as joy or happiness).
I met one young indigenous man who had saved for two years in hopes of migrating to the US with his new bride. When her parents forbade her, their dreams vanished, and his face twisted out of control. His disfigurement covered with a yellow bandana, he explained how he had spent the money instead on a costly regimen of vitamin-B injections. An NGO worker told me that her aunt’s face paralyzed when she was robbed, having just withdrawn 20,000 quetzales (US$3000) from the bank. The value of a life’s work congealed in paper, gone in an instant. An activist friend recounted seeing similar cases among clandestine “communities of populations in resistance” (internally displaced) during the war, indigenous villagers who had fled violence and were living in extreme deprivation and fear, constantly moving through mountains and jungle to evade the army. Sometimes the torsion of expression lingered, and at times became permanent, which many attributed to a lack of treatment.
Facial paralysis befell my long-time friend who was defrauded by a bank. After working for three years in the US, he returned to Guatemala and placed his life savings into BANCAFE. In the early 2000s, the bank’s owners illegally deposited millions into offshore accounts, declared insolvency, and fled the country. Thousands of account holders organized rallies, demanding that the government take action, only to be told that their protests were in vain as it was too late to hold the bank accountable. To punctuate this point, the national police turned water cannons on protestors in Guatemala City. My friend was furious with the crooked bankers and their government accomplices, but couldn’t do anything. When his anger exploded into a brick wall of intransigence, derrame struck.
I began seeing cases everywhere, far more than the North American biomedical accounts might have predicted. When I dug deeper, I was referred to a pharmacy in a small town near the department capital that offered low cost home remedies for this peculiar condition: light electric shocks to the face from a metal wand wired to a hand crank magnetic generator housed in a metal box. The device was invented by a long-deceased doctor, a town founder and Rosicrucian mystic. This I was told by his aging granddaughters who treat a steady stream of cases for over a decade—7-10 each day. They charged 15 quetzales for a session that lasts about 15 minutes, far more affordable than the vitamin or steroid injections prescribed by local physicians. I watched them treat patients, who said that the shocks loosened their muscles and provided temporary relief. Some were cured after several visits. During the extreme counterinsurgency violence of the 1980s, the pharmacists remembered that cases of derrame more than tripled.
Sometimes emotional and bodily stress combined. One poor, middle- aged, disheveled single mother wrapped her head in a black shawl and avoided bright light. She explained that her derrame began when she was lying awake at night worrying about how to pay for her child’s education after his school announced they were raising tuition. Abandoned by her partner and caring for several children, she made a meager living selling tamales on buses, waking up before 5am to cook them, and carrying a heavy basket on her head all day in the hot sun, which gave her a terrible headache. Contrary to the North American understanding, where derrame strikes once and does not recur, this was her third derrame. She recounted a previous case caused by alegria, nineteen years ago, when she gave birth to her first daughter after having four sons. Another woman linked her derrame to susto (fright) and enojos (angers)—to use oversimplified translations—resulting from routine physical abuse by her husband upon whom she and her children were dependent. The pharmacists reported seeing more female than male patients due to domestic abuse and also, they believed, because of reactions to hormonal birth control injections. However, the medical cases were not always correlated to acute misfortune or unexpected happiness; several sufferers I interviewed claimed that there was no precipitating event, although they might not have wanted to reveal such personal or potentially embarrassing information to a gringo holding a camera.
Rather than see all cases as instances of a universal category: ‘Bell’s palsy’, I follow medical anthropologists who examine how meanings, categories, and emotions configure distinct illness experiences, which are further shaped by social, historical, and political contexts. I am also interested in bodily intensities and nervous systems, in the plural, as historical and social artifacts. What might these cases of derrame reveal about how Guatemalan social and political realities congeal in living bodies and affective imaginaries? How does bodily affect blur the line between individual experience and social worlds? I found one clue in that almost everyone I spoke with narrated their derrame as a result of their being forced to tragar (swallow) intense and generally negative emotions that could not find an outlet or satisfaction. This metaphor of ingestion and forcible envelopment dramatizes the interminable labor of absorbing pain and frustration into the body and speaks to the existence of some kind of habitual disposition of defensive girding associated with this process. Derrame only means stroke in the limited context of a brain hemorrhage. It also means to spill out and over: experiences of structural violence that cannot be absorbed or somaticized spills over onto the face, or perhaps in the cases precipitated by alegria, a breaching of the habits and orientations through which subjects shield themselves from the expected harshness of everyday life.
It seemed to me that these sufferers share engrained dispositions and sedimented responses to frustration with endemic poverty, violence, crime, and other forms of victimization and injustice that are systematically and disproportionately inflicted on poor, indigenous, and female bodies in Guatemala in the course of normally extant social relations. The high incidence of derrame was the tip of an iceberg of social suffering; it rendered legible the extent to which violence assaults lives and social worlds in the low hum of the ordinary.
I see in the lived situations surrounding most cases of derrame a distinctive pattern where people struggle against hardship and injustice that they ultimately have to endure and swallow. For those whose derrame was related to euphoria, derrame might be incited by an intense rush of feeling unleashed by the temporary lowering of a rigid barrier routinely held up as protection against expected misfortune and abjection—the “swallowing mechanism”. It is hard to say more without careful and extended observation. But it is hard not to draw parallels to Guatemalan history. In 1954, a CIA-sponsored coup upended a decade-long experiment with democracy driven by peasant hunger for land. Military dictatorship set the stage for the revolution, a spillover of political desire. A vicious counterinsurgency inflicted unspeakable cruelty to vanquish the guerrilla and hope itself. But desire for change persisted, and inspired the 1996 peace accords, which promised more than they delivered. Neoliberal democracy partially accommodates political challenges, even embracing human and indigenous rights, but leaves structural victimization intact and inflicts new injuries.
The experiences of individual sufferers are always in some respect irreducible, but sufferers can also be read as cases to reveal distinctive patterns of embodiment fashioned by the heterogeneous, unbounded, and imbalanced social “nervous systems” of which they form part. The ethnographic challenge is to ponder the distinctive experiences and meanings of alegria, susto, and nervios, which do not translate neatly into the Western conceptions “happiness”, “fright”, or “nerves”, and to understand them as cultural and historical products, distinctive ways of being in the world. I read the similarities between these cases of derrame to index the limits of some Guatemalan’s ability to effectively swallow injustice, exposure, and victimization. I view the epidemic of derrame as a trace of structural violence on the most visible, personal, and emotionally inscribed bodily surface, the face—a jarring sign of the acute frustration that is an ordinary affect in contemporary Guatemala and much of the postcolonial world.
Nicholas Copeland is a cultural anthropologist and assistant professor of American Indian Studies at Virginia Tech. His research in Guatemala examines transformations in Mayan political imaginaries through experiences with revolution, counterinsurgency, development, and neoliberal multicultural democracy.
 Clinicians typically distinguish facial paralysis caused by damage to the central and peripheral nervous systems, the latter being Bell’s Palsy.
 Hauser WA, Karnes WE, Annis J, Kurland LT. Incidence and prognosis of Bell’s palsy in the population of Rochester, Minnesota. Mayo Clin Proc 1971;46:258-64
 Hahn, Robert and Arthur Kleinman. 1983. Biomedical Practice and Anthropological Theory: Frameworks and Directions. Annual Review of Anthropology. 305-333
 Taussig, Michael. 1992. The Nervous System. New York: Routledge.
Here’s comes the second round of what you’ll find ‘In the Journals’ from July. For the Special Issue on HIV Criminalisation and Public Health in the latest edition of Critical Public Health, see this week’s earlier post.
To start us off, the latest issue of Medical Anthropology focuses on ‘exploring bodies in Southern and East Africa.’ In their editorial, Emilie Venables and Lenore Manderson introduce articles that ‘examine how an analytical lens of corporeality can offer new ways to examine and understand linkages and dissonances between migration, violence, and health in the lives of people across the Southern and Eastern African region’.
Elsa Oliveira & Jo Vearey
Many migrants in inner-city Johannesburg survive through unconventional and sometimes criminalized livelihood activities. In this article, we draw on data from a study that applied a participatory visual methodology to work with migrant women who sell sex, and explored the suitability of this approach as a way to engage with a presumed ‘hard to reach’ urban population. The lived experiences of migrant women sex workers were documented by combining participatory visual methods with a more traditional ethnographic approach, and this approach led us to new ways of seeing their worlds. This methodological approach raises important considerations for working with marginalized and criminalized urban groups.
Godfrey Maringira & Lorena Núñez Carrasco
Through military training, soldiers’ bodies are shaped and prepared for war and military-related duties. In the context these former Zimbabwean soldiers find themselves—that of desertion and ‘underground life’ in exile in South Africa—their military-trained bodies and military skills are their only resource. In this article, we explore the ways in which former soldiers maintain and ‘reuse’ their military-trained bodies in South Africa for survival, in a context of high unemployment and a violent, inner-city environment. We look at their social world and practices of soldiering—a term that refers to the specific forms of their social interaction in exile, through which they keep their memories of their military past alive. By attending to their subjectivities and the endurance of their masculine military identities and bodies, we aim to contribute to the discussion on demilitarization, which has largely focused on the failure of models of intervention to assist ex-combatants in postconflict contexts.
In this article, I analyze the role of bodily capital in the daily policing practices of armed response officers, a specific type of private security officers, in Durban, South Africa. Based on 20 months of ethnographic fieldwork, I argue that the masculinized bodily capital of armed response officers is a key source of their sovereign power; it plays a central role in how they acquire and exert authority. Furthermore, I argue that an analysis of bodily capital should not solely analyze the actual flesh of the body, but must include particular equipment (such as bulletproof vests and firearms) that is experienced as a part of the body.
Southern African traditional healers often generalize too broadly from discrete (‘accidental’) instances of success, partly to recruit a clientele, while biomedicine frequently reasons incorrectly from the general to the specific. Both logics are based on empirical observations, but are inversions of each other; these I characterize as ‘magical empiricism.’ ‘Magic’ functions as a metapragmatic discourse to recruit a clientele from a skeptical public that doubts the efficacy of any therapeutic interventions, and it acts in parallel with other practical (and efficacious) healing acts. I introduce the concept of ‘exposed beings’ to describe locally specific constructions of the person as patient and healer. This helps to explain the existence and enduring appeal of many different medical practices and beliefs in South Africa, but I suggest that ‘medical parallelism’ rather than ‘pluralism’ might be more accurate.
Zaheera Jinnah & Lucy Lowe
Female circumcision among Somalis is a deeply personal and subjective practice, framed within traditional norms and cultural practices, but negotiated within contemporary realities to produce a set of processes and practices that are nuanced, differentiated, and undergoing change. Based on ethnographic research among Somali women in Johannesburg and Nairobi, we argue that the context of forced migration provides women with opportunities to renegotiate and reinvent what female circumcision means to them. The complex, subjective, and diverse perceptions and experiences of circumcision as embedded processes, within the context of migration, we argue has been overlooked in the literature, which has tended to be framed within a normative discourse concerned with the medical effects of the practice, or in anthropological studies, counter to the normative discourse based on personal narratives.
In this paper, I demonstrate how autoethnography can be utilized as a methodology to conduct public health research. My argument is structured around an application of Jacques Lacan’s psychoanalytic theory which I see as supporting and extending a critical understanding of the so-called obesity epidemic and related issues. I argue that the body mass index (BMI) measure has achieved an unconscious position as a ‘Sovereign Good’ and, as such, provides the moral and ethical mechanism through which state-sanctioned science, via the wider weight-loss industry, prescribes people into a state of weight anxiety. I conclude that public health practitioners who find themselves promoting weight loss towards the ‘healthy’ range of the BMI are in an unethical position, one that should be entirely rejected. Instead I point to the ethics of desire as an alternative position that might help public health practitioners who are interested in actually improving public health.
Cameron Duff & David Moore
While much has been made of the governmentality evinced in drug policy, its effects on people who use drugs have received less attention. Scholars who have investigated these effects commonly focus on the views and experiences of individuals receiving treatment for their drug use, often reporting an explicit desire among individuals in treatment for a return to a normal, healthy life. Many authors trace this desire to the normalisation inherent in drug policy, and the governmentality involved in the delivery of drug treatment more directly. This article adds to these discussions by shifting focus from the experience of individuals in treatment to those out of treatment settings. In so doing, we aim to develop a more nuanced understanding of how heavy drug users negotiate power, governmentality and the modulations of health and illness in the course of everyday life. We ground our discussion in qualitative research conducted in Melbourne, Australia, with 31 current methamphetamine consumers. We argue that regular methamphetamine consumption involves a complex and ambivalent relationship with the ideas of health and normal life, imposing as well as reflecting a form of estrangement between its consumers and mainstream (or normal) society. This ambivalence has important implications for the delivery of health and social services among methamphetamine consumers, insofar as the restoration of normal health and the reintegration of former drug users into mainstream society are typical health service goals. We address some of these policy implications by way of conclusion.
Kay Aranda and Angie Hart
Recent public health policies have re-endorsed the key role all health and social care professionals have in tackling the social determinants of health inequalities. With inequalities firmly entrenched, and much theorising focused on reproduction rather than transformation, sustaining practitioner commitment and engagement with this work and maintaining confidence in achieving change is challenging. One increasingly popular way to intervene in practice to begin to address inequalities has been the use of resilience, even though resilience is frequently critiqued for its collusion with neoliberal imperatives in favouring individualised rather than socio-political responses. This article examines these concerns through the use of the practice turn and specifically ‘slim-line’ practice theory and ‘tinkering’ to explore the potential for reframing resilience theory and practice. Using an original data set derived from evaluations of resilience-based programmes, held with parents and practitioners between 2008 and 2012, this article re-examines participants’ understandings of resilience. We show how practice theory reveals entangled and emergent meanings, competencies and materials that constitute resilience as a social practice comprised of resilient moves. The implications of this reframing are discussed in relation to ontology, agency and change; but also for resilience theory and practice and public health practices more generally. In conclusion, we argue practice theory’s attention to context as more than mere backdrop to action helps shift inequality theorising beyond the individual and reproduction towards deeper, detailed social understandings of transformation and change.
Noémia Lopes, Telmo Clamote, Elsa Pegado, and Carla Rodrigues
This article analyses performance consumptions among young people. The theme is explored along two main axes. The first concerns the social heterogeneity in this field, considered on two levels: the different purposes for those investments – cognitive/mental and physical performance; and the different social contexts – university and work – where performance practices and dispositions may be fostered. The second axis explores the roles of pharmacological and natural consumptions, and their interrelationship, in the dissemination of these practices. The empirical data for this analysis were drawn from an ongoing research project on performance consumptions among young people (aged 18−29 years) in Portugal, including both university students and young workers without university education. The results correspond to the stage of extensive research, for which a questionnaire was organised at a national level, using non-proportional quota sampling. On the one hand, they show that (a) there is a hierarchy of acceptance of consumptions according to their purposes, with cognitive/mental performance showing higher acceptance and (b) both pharmaceuticals and natural products are consumed for every type of performance investment. On the other, the comparison between students and workers introduces a certain heterogeneity in this general backdrop, both in terms of the purposes for their consumptions and their opting for natural or pharmacological resources. These threads of heterogeneity will prompt a discussion of the dynamics of pharmaceuticalisation within the field of performance, in particular how therapeutic cultures may be changing in terms of the way individuals relate to medications, expanding their uses in social life.
Yorghos Apostolopoulos, Sevil Sönmez, Michael Kenneth Lemke, and Richard B. Rothenberg
This article illustrates how urban inner-city trucking milieux may influence STI/BBI/HIV acquisition and transmission risks for U.S. long-haul truckers, as well as their social and risk relationships. Using mixed methods, we collected ethnoepidemiological and biological data from long-haul truck drivers and their risk contacts in inner-city trucking milieux in Atlanta, Georgia, United States. Key findings indicate that within the risk-endemic environment of distressed inner-city areas, diverse trucking risk milieux can amplify STI/BBI/HIV risk for multiplex networks of truckers. Inner-city neighborhood location, short geographic distance among risk contacts, and trucker concurrency can potentially exacerbate transmission via bridging higher-risk individuals with lower-risk populations at disparate geographic and epidemiological locations.
Yanqing Xu and Fahui Wang
Based on the data from the Behavioral Risk Factor Surveillance System 2012, this study examines the association of neighborhood built environments with individual physical inactivity and obesity in the U.S. Multilevel modeling is used to control for the effects of individual socio-demographic characteristics. Neighborhood variables include built environment, poverty level and urbanicity at the county level. Among the built environment variables, a poorer street connectivity and a more prominent presence of fast-food restaurants are associated with a higher obesity risk (especially for areas of certain urbanicity levels). Analysis of data subsets divided by areas of different urbanicity levels and by gender reveals the variability of effects of independent variables, more so for the neighborhood variables than individual variables. This implies that some obesity risk factors are geographically specific and vary between men and women. The results lend support to the role of built environment in influencing people׳s health behavior and outcome, and promote public policies that need to be geographically adaptable and sensitive to the diversity of demographic groups.
Anna Toma, Mark Hamer and Aparna Shankar
This study examined whether perceived neighborhood factors were associated with positive well-being in older adults using data from the English Longitudinal Study of Ageing. Neighborhood perceptions were assessed at baseline (2006/2007) and three measures of well-being – hedonic, eudaimonic and evaluative – were assessed at baseline and follow-up (2010/2011) for 6134 participants. In cross-sectional and longitudinal analyses, negative neighborhood perceptions were associated with poorer well-being on all three measures. These associations remained significant after adjusting for a range of sociodemographic and health status variables and depressive symptoms.
Julie Brimblecombe, Christel van den Boogaard, Beverley Wood, Selma C Liberato, Jacqui Brown, Adam Barnes, Alison Rogers, John Coveney, Jan Ritchie, and Ross Bailie
Few frameworks exist to assist food system planning, especially for Indigenous Australian remote communities. We developed a Good Food Planning Tool to support stakeholders to collectively plan and take action for local food system improvement. Development occurred over a four-year period through an evolving four phase participatory process that included literature review, several meetings with representatives of various organisations and communities and application of the Tool with multi-sector groups in each of four Indigenous Australian remote communities. A diverse range of 148 stakeholders, 78 of whom were Indigenous, had input to its development. Five food system domains: (i) Leadership and partnerships; (ii) Traditional food and local food production; (iii) Food businesses; (iv) Buildings, public places and transport; (v) Community and services and 28 activity areas form the framework of the Tool. The Good Food Planning Tool provides a useful framework to facilitate collective appraisal of the food system and to identify opportunities for food system improvement in Indigenous Australian remote communities, with potential for adaptation for wider application.
Shawn Renee Hordyk, Jill Hanley and Eric Richard
In this article, we draw on a 2012 Montreal-based study that examined the embodied, every day practices of immigrant children and families in the context of urban greenspaces such as parks, fields, backyards, streetscapes, gardens, forests and rivers. Results suggest that activities in the natural environment serve as a protective factor in the health and well-being of this population, providing emotional and physical nourishment in the face of adversity. Using the Social Determinants of Health model adopted by the World Health Organization (WHO, 1998), we analyze how participants accessed urban nature to minimize the effects of inadequate housing, to strengthen social cohesion and reduce emotional stress. We conclude with a discussion supporting the inclusion of the natural environment in the Social Determinants of Health Model.
Julia McQuoid, Jennifer Welsh, Lyndall Strazdins, Amy L. Griffin, and Cathy Banwell
The upward trend of chronic illness in working age populations calls for better understanding of the difficulties chronically ill people face with workforce participation. Existing research focuses primarily on physical limitations and employer attitudes about chronic illness. Here we use a space-time approach to illuminate the importance of negotiating logistical challenges and embodied rhythms when balancing work and chronic illness. We draw from time geography and rhythmanalysis in analysing interviews from a qualitative case study of 26 individuals living with chronic kidney disease in Australia. Difficulties with paid work arise from: (1) competition for space-time resources by employers and health services; (2) arrhythmias between the body, work and health services; and (3) the absence of workplace rhythms on which to ‘hook’ health activities. Implications for workplaces and health services design are discussed.
Andrea Capstick and Katherine Ludwin
A participatory film-making study carried out in long-term social care with 10 people with Alzheimer-type dementia found that places the participants had known early in life were spontaneously foregrounded. Participants’ memories of such places were well-preserved, particularly when photo-elicitation techniques, using visual images as prompts, were employed. Consistent with previous work on the ‘reminiscence bump’ in dementia, the foregrounded memories belonged in all cases to the period of life between approximately 5 and 30 years. Frequently the remembered places were connected with major life events which continued to have a strong emotional component. The continuing significance of place in the context of long-term dementia care is considered from a psychogeographical perspective.
Marcie Snyder and Kathi Wilson
Urban Indigenous peoples face a disproportionate burden of ill health compared to non-Indigenous populations, and experience more frequent geographic mobility. However, most of what is known about Indigenous health is limited to rural, northern, or in the case of Canada, reserve-based populations. Little is known about the complexities of urban Indigenous health, and the differential impacts of residential mobility and urban migration remain poorly understood. Drawing upon interviews with Aboriginal movers and service providers in Winnipeg, Canada, we apply a critical population health lens, informed by holistic health, to examine these impacts. The results demonstrate mobility is an intergenerational phenomenon, influenced by colonial practices. While migration can contribute to positive health experiences, residential mobility, which is largely involuntary, and linked to stressors such as neighborhood safety, results in negative health effects.
Lee Thompson and Susan Bidwell
Community pharmacies have a complex relationship with the field of health care. This is especially so in countries where pharmaceuticals are dispensed from privately owned retail premises. Using qualitative data and social theoretical concepts, we argue that the time, space and emotional entanglements that take place in and through these sites are far from simple and can be more or less productive in terms of meeting customer needs and fostering professional identity for pharmacists. Unpicking this complexity has the potential to highlight lacunae that result from differential expectations.
Sara Glasgow and Ted Schrecker
The growing prevalence of NCDs in low- and middle-income countries (LMICs) is now recognized as one of the major global health policy issues of the early 21st century. Current official approaches reflect ambivalence about how health policy should approach the social determinants of health identified by the WHO Commission on the topic that released its report in 2008, and in particular the role of macro-scale economic and social processes. Authoritative framing of options for NCD prevention in advance of the September, 2011 UN high-level meeting on NCDs arguably relied on a selective reading of the scientific (including social scientific) evidence, and foregrounded a limited number of risk factors defined in terms of individual behavior: tobacco use, unhealthy diet, alcohol (ab)use and physical inactivity. The effect was to reproduce at a transnational level the individualization of responsibility for health that characterizes most health promotion initiatives in high-income countries, ignoring both the limited control that many people have over their exposure to these risk factors and the contribution of macro-scale processes like trade liberalization and the marketing activities of transnational corporations to the global burden of NCDs. An alternative perspective focuses on “the inequitable distribution of power, money, and resources” described by the WHO Commission, and the ways in which policies that address those inequities can avoid unintentional incorporation of neoliberal constructions of risk and responsibility.
Carolyn J. Dean
This essay explores assumptions that underpin discourses on atrocity photographs, including the idea that images objectify photographed subjects or traumatize viewers. The essay analyzes the unexamined ideas that construct these assumptions, in particular the affective investment in the concept of human dignity as an image of invulnerability. Arguments about atrocity photographs pit important if recent concepts of photography’s ostensibly transformative if vexed political function to “bear witness” against an aversion to the display of violated human dignity whose sources are psychic and cultural.
Jeremy Adelman, Michele Alacevich, Victoria de Grazia, Ira Katznelson and Nadia Urbinati
Albert O. Hirschman (1915–2012) is recognized as one of the most well-rounded and interdisciplinary social scientists of the postwar era. After fleeing Germany as a young opponent of the Nazi regime, he moved across countries, languages, and disciplinary boundaries. He was a pioneer of development economics and other social sciences, to which he contributed with exemplary analyses of the processes and mechanisms of political, economic, and social change. Following Hirschman’s own interdisciplinary approach, Nadia Urbinati, Ira Katznelson, Victoria De Grazia, Jeremy Adelman, and Michele Alacevich will explore the milestones of his incredibly rich intellectual journey.
These pages, excerpted from Gregory Mann’s From Empires to NGOs in the West African Sahel: the Road to Nongovernmentality, offer a succinct overview of its key points. Mann asks how it is that in the years following independence from French colonial rule, in a period when state sovereignty was highly valued, international NGOs took on some of the functions of government in the West African Sahel. He sketches the rise of ambitious and aggressive African governments, the effects of drought and famine, and the emergence of Human Rights campaigns that built on older anti-colonial and labor movements.
Records of drone flights during the Cold War include photographs, engineering documents, commercial pamphlets, and newspaper articles. This series of images photographed pieces of documentation and re-created scenes to consider the anachronism of Cold War target drones in the midst of contemporary “unmanned” warfare. The five triptychs and accompanying essay ask how drone technologies, and the humans who produce and operate them, map onto visible and invisible domestic and international spaces and with what consequences? The pieces underscore the persistence of secrecy and the interplay between soldier, enemy and target, even as the images undo current notions of drone aircraft.
Raising questions about how vulnerable “others” are represented in our mediated culture, and whether such a spectacle of suffering has the power to move us to action, the essay investigates what kinds of aesthetic, ethical, and political challenges are connected with the mediatization of humanitarian space in the neoliberal age. Focusing on the communication techniques used to generate empathy between the spectator and the suffering subject, the paper moves from Lilie Chouliaraki’s The Ironic Spectator: Solidarity in the Age of Post-Humanitarianism and Susie Linfield’s The Cruel Radiance: Photography and Political Violence to explore the complex relationship between the visual media, the needs of victims, and public attention, and unveils the many paradoxes intrinsic to the link between contemporary politics of humanitarianism and the government of human beings.
During the interwar years, 1919–1939, State Department of Health (DOH) laboratories from around the United States provided scientific leadership and dedicated bench work to support the development of standardized laboratory technique. One important focus of the work was syphilis testing. In recent years, historians have explored the heated arguments and international debates surrounding the development of standardized methods. This article adds State Departments of Health to the venues in which scientists performed valuable research aimed at standardizing and improving analytic procedures. I argue that the research conducted in DOH laboratories to provide Progressive Era public health officials with accurate and efficient tools to control syphilis and other infectious diseases required significant innovation, international cooperation, and scientific creativity from scientists deeply engaged in multiple research projects. These endeavors offer an instructive venue for historians to begin to re-envision DOH laboratories as vibrant sites for scientific research, where work on standard methods was an enterprise of discovery and innovation.
Karen D. Ross
In 1923, Thomas Barbour of Harvard announced the creation of a national lay organization, the Society of Friends of Medical Progress (FMP), to defend animal research in the United States against a resurgent antivivisection movement. After decades of successful behind-the-scenes lobbying and avoiding the public spotlight, medical scientists significantly altered their tactics and sought public engagement, at least by proxy. Although the authority of scientific medicine was rising, women’s suffrage, the advent of the ballot initiative, and a growing alliance of antivivisectionists and other groups in opposition to allopathic medicine so altered the political landscape that medical scientists reconsidered formerly rejected ideas such partnering with laymen. Medical scientists, Walter B. Cannon and Simon Flexner chief among them, hoped that the FMP would relieve the scientists of a time-consuming burden and defend against government regulation of medical institutions without the charge of material self-interest. However, financial problems and the frequent conflicts that arose between the lay leadership and Flexner eventually undermined the FMP’s value as a defender of animal experimentation and reveal the distrust of reformers like Flexner who did not believe that laymen could speak for scientific medicine.
The period 1961–76 was one of marked contestation in Britain about how organs should be obtained from recently deceased people’s bodies to transplant into ailing strangers. Most were being removed from hospital patients’ corpses without these people’s prior consent, under a law that enabled hospital authorities to so authorize the use of a body with one caveat: enquiries should first be made to learn whether the dead person had in life objected to this or whether a family member did. Transplant surgeons argued that this requirement severely hampered their enterprise. They pushed for the 1961 Human Tissue Act to be overturned, to enable them to presume that all patients in British hospitals had consented to their organs being removed when they died, with no requirement that relatives’ views be sought first. As a contemporary ethicist noted, this savored more of “conscription than of voluntary service” in the cause.1 The following essay, based on an examination of archival sources, reveals the historical complexity of arguments that continue to be made in favor of presumed consent to organ “donation,” analyzing how early attempts to change the law in that direction failed while revealing the presence of different interests and values in this contest over corpses.
The capacity of individuals to imagine another’s perspective or personal agenda, and our own ability to feel anger, despondency or frustration in response to their pain and distress, has been singled out as something to consider in multiple stories and studies found on the web this month. Is empathy a choice, or something less conscious? Is it always a good thing, or do some situations challenge our empathetic nature? This month’s roundup highlights pieces found around the web in which this question is tackled.
Empathy is normally thought of as being a positive quality to have, however a few stories this month challenge that assumption. The notion of empathy as an unfashionable political emotion is the subject of an article examining recent government policies surrounding cuts to benefits for destitute asylum seekers in the UK, which the article argues ignores the human cost in favor of perpetuating a particular ideology and fiscal responsibilities before the individual lives affected by these policies. This sentiment rings true when thinking about the rise in inequality and its threat to empathy as well, where the less interaction one has with someone unlike themselves, the less empathy one tends to have for them. This is the focus of a piece focusing on the link between empathy and trust, and the need for empathy to ensure the smooth running of a society. The article suggests that the less trust and empathy among a citizenry, the more measures such as policing, regulation and other external enforcements are relied upon. Such propositions highlight a well-researched effect of empathy, in which individuals feel more empathetic to those similar to themselves, thus exacerbating already existing social inequalities. It is this tendency, to use one oft cited example, to view one death as a tragedy and one million as a statistic, which is the focus of an article in the Atlantic highlighting recent research proposing that to be an empathic person doesn’t actually make one a better person. The New York Times conducted a review of recent studies that back up this claim that empathy is actually a choice, and is constrained when it comes to individuals of different races, nationalities or creeds. Citing several recent studies, the article concludes that empathy is in fact a limited resource that cannot be applied to everyone for indefinite periods of time and can sometimes fail when it is most needed.
Recent research from Northwestern University into why some people have more empathy than others suggests that those who have suffered are often times the least compassionate, indicating that those who have gone through difficult experiences tend to be harsher critics of those who are having a hard time themselves. They conclude that a sense of not remembering the difficulty of their own struggles, and viewing them through a lens of having overcome it on their own makes them less charitable in their outlook. The researchers suggest that walking in another’s shoes is sometimes not enough to truly understand another’s struggle.
On a more positive note, novel approaches to addressing this potential inability to truly understand another’s experience is the focus of research from two sources: A Los Angeles based news site called Ryot, and the Virtual Human Interaction lab at Stanford University which were both included in a recent story on NPR. The piece highlighted research in which film and virtual reality are used as a way to change how people feel about certain situations, suggesting that to experience an event as opposed to watching it will create more of a sense of empathy.
Several pieces addressed the need for increased empathy in a world that feels increasingly disconnected, with many looking at empathy as a skill that can be learned, as opposed to a fixed personality trait. The BBC magazine published an article suggesting you can in fact teach empathy by first examining your own empathic tendencies, and following up with making a habit of ‘radical listening’, developing an awareness of the individuals we come into contact with in the day-to-day living of our lives, and as an extension of this, developing and maintaining a curiosity about strangers. Similarly, another story also uses curiosity and listening as a necessary starting point for teaching oneself to become more empathetic.
Finally, putting empathy into practice is the topic of another article focusing on empathy as a necessity in violent environments such as Afghanistan. The piece notes that the Afghan government has made mental healthcare a priority over the last few years in order to make care more affordable and reduce stigma, and is behind an international psychosocial organization training therapists across the country. As a result, local clinics are employing community residents to act as psychosocial counselors to use empathy as a means to help others living amidst abuse, poverty and addiction, using their own position and experience as a means to help others survive psychologically. The increasing need and effectiveness of empathy is also to focus of a story on the importance of teaching empathy to children, the idea being that empathy is the building block for our conscience. The article argues that a lack of conscience is often the trait that history has shown leads to horrific acts including slavery, genocide, rape and murder. Perhaps the founders of an empathy museum (the subject of a recent article in Independent) set to open in the UK later in 2015 are on to something, as in considering how coming into contact with people you might not otherwise meet in your daily life can have a powerful effect on how you approach understanding the position of others on a deeper level.
In her superb exposition of staring, Garland-Thomson (2009) draws attention to Chris Rush’s artistic piece Swim 2 which depicts a woman with Down’s syndrome in a regal pose (figure 1).
The portrait invites us to stare, engrossed perhaps less with the “strangeness” of this woman’s disability and more with the strangeness of witnessing such dignity in a face that marks a life we have learned to imagine as unliveable and unworthy, as the kind of person we routinely detect in advance through medical technology and eliminate from our human community (2009: 83).
Garland-Thomson appears to mark two separate ‘orientations’ (Friedner 2015): one in which Down’s syndrome is afforded a positive social imaginary marked by dignity and worth, and another in which this condition is categorised as an existence without value. Likewise, I see two different and competing ways of enacting Down’s syndrome, that is, as both a negative pregnancy outcome (via prenatal technology) and as joyous and enlightening, and not the misfortune one may initially imagine on receipt of a diagnosis (via parental accounts). I explore these contentions below.
Prenatal Technology: A Troubled Relationship
Down’s syndrome is one of the most common genetic conditions in the world, affecting approximately one to two of every 1,000 live births in England and Wales alone (based on NHS statistics). People with Down’s syndrome are likely to have several symptoms such as learning difficulties, shortened limbs, reduced muscle tone, restricted growth, and a flat facial profile. However, it is by no means a simple or straightforward diagnostic category. Down’s syndrome is often identified in medical discourse as ‘compatible with life’ which translates to people being likely to survive childbirth, although symptoms and prognosis vary considerably in each case. Indeed, its main attribute is the irregularity of its manifestation. Nonetheless, owing to medical advances and an increased knowledge of treatment and care, people with Down’s syndrome can live beyond sixty years.
Down’s syndrome holds a central position in the politics of reproduction within the UK national healthcare system (among others). In my ethnographic study of prenatal screening, I explore how Down’s syndrome is constructed in everyday encounters in the clinic and how both professionals and patients make sense and meaning in their worlds.
In my research, I found, among other things, that a discussion of Down’s syndrome is avoided in prenatal screening consultations. This relative silence is upheld owing to three things: i) the UK public, as a collective group, is construed as knowing what Down’s syndrome is; ii) the everyday organisation of care dictates that a full, or even short, discussion of the condition is difficult and unviable in time-restricted encounters, and; iii) professionals commonly admit to having minimal knowledge of Down’s syndrome, thus highlighting certain healthcare training needs. This absence is supplemented by negative discourses embedded throughout prenatal care categorising the condition as a ‘risk’ or ‘problem’. This plays a crucial role in (re)producing its status as a negative pregnancy outcome. To illustrate this point further, I provide an extract from a consultation that I observed between a midwife and a patient/expectant mother:
Midwife: So the test has changed slightly since your last pregnancy.
Midwife: We check four hormones in the blood now so we use the quadruple test rather than the triple test which you had before. It has a 70% detection rate and, as you know, it tells you whether you’re a high-risk or low-risk. If you’re low-risk, we do nothing else but that doesn’t mean the baby has no chance of having Down’s syndrome.
Midwife: If you’re high-risk, we call you within five working days of the result and we offer you an appointment to discuss your options within twenty-four hours. We offer an amnio[centesis] which tests the fluid around the baby and can say for sure whether your baby has Down’s syndrome or any other problems. But it does have a miscarriage rate of 1%. So would you like to have the initial testing?
Midwife: OK. […] The cut-off is 150 or 151. If it’s anything less than that, it’s a low-risk so 1 in 151 and lower than that and we will let you know what your risk factor is. And so a high-risk would be something like 1 in 145. […] So if you consider that you come back as high-risk, you might consider having an amnio[centesis].
[Midwife walks with patient to another room for the quadruple screen].
This consultation raises several concerns: the one-way traffic of the interaction; the possible undermining of the dominant healthcare principle of non-directiveness (‘So if you consider that you come back as high-risk, you might consider having an amnio[centesis]); the classification of the patient herself as high-risk or low-risk, and; unclear language (the terms ‘screen’ and ‘test’ being used interchangeably despite their different meanings, ‘The cut-off is 150 or 151. If it’s anything less than that, it’s a low-risk so 1 in 151 and lower than that and we will let you know what your risk factor is’, etc.). What is more, the midwife says that an amniocentesis can detect ‘Down’s syndrome and any other problems’. This, in conjunction with the prominence of the risk discourse (a risk, in turn, is to be avoided and implies danger) and the relative absence of Down’s syndrome (that is, a meaningful discussion of the condition) in consultations, frames it as a harmful and damaging pregnancy outcome1. [i] What I argue throughout much of my work is that while Down’s syndrome is a complex and often inconsistent condition (i.e. in relation to prognosis and symptoms), this intricacy and diversity is masked by the universal constitution of it – at least within the medical realm – as a risk, a problem, as abnormal.
Although the consultation cited above is only one example, it is indicative of trends observed throughout my ethnography (as I have demonstrated in complimentary publications). Here, I show how the everyday and banal social practices of the clinic constitute certain (future) bodies as valued or unvalued; certain ways of being in the world are threatened, denied, or enacted as damaging and unwanted. In short, I identify how in the clinic, Down’s syndrome is imbued with negativity; it holds a metonymical status for the abnormal, that is, as something which should be detected and, if a diagnosis is established, something which constitutes a reason for termination of a pregnancy.
This categorisation is vital to prenatal screening – as a process – being continued. In order for screening to endure in its current form, Down’s syndrome must be treated as abnormal and as an inherently negative outcome. [ii] One may argue, then, that parents may not necessarily be given an opportunity to take on the role of ‘moral pioneers’ as Rapp (2000: 3) describes in her seminal ethnography on amniocentesis. That is, the notion of ‘choice’ becomes problematic, if not redundant, once Down’s syndrome is constructed in such a manner. This perhaps contradicts much recent literature on choice, neoliberalism, and liberal eugenics in the clinic. This negative constitution of Down’s syndrome possibly explains – or is at least one component of – the termination statistics for the condition in England and Wales. In 2012, of 1,259 prenatal diagnoses of Down’s syndrome, 90% (n=983) were terminated, 7% (n=76) were live births, and 3% (n=34) were natural miscarriages or stillbirths (the outcome of 166 prenatal diagnoses is unknown). From the first report in 1989 until 2012, the annual rates for termination following a prenatal diagnosis of Down’s syndrome have ranged from 88% to 94%. [iii]
A ‘Down’s Syndrome Public’
The negative configuring of Down’s syndrome in the medical realm exists in tension with the optimistic imaginary reflected in empirical studies (Flaherty and Glidden 2000; Skotko 2005; Van Roper and Choi 2011) and autobiographies of parents with a child who has Down’s syndrome. Focusing on the latter, both mothers (Clark 2008; Groneberg 2008; Lewis 2008; Soper 2009) and fathers (Austin 2014; Bérubé 1996; Daugherty 2015) have recounted their positive experiences of parenting a child with Down’s syndrome, recognising their situation as one which should not always be viewed as unwanted, pitiful, or tragic. Parents, indeed, often detail the joy of raising such a child, albeit while recognising the initial difficulties encountered when coming to terms with this reality and the significant challenges (e.g. medical, social, familial, educational, vocational, political, and economic) they have faced/will face on this journey.
I have encountered similar interpretations both in my personal life (I grew up with Brittany, an ex-neighbour and family friend around my age who has Down’s syndrome) and my research on parents’ experiences of the diagnosis and living with a child who has Down’s syndrome. In an earlier project, I capture how parents – both mothers and fathers – report limited evidence of stigmatisation, on account of their child, in everyday public interactions. Explanations for this include the medical visibility of Down’s syndrome (therefore offering a visual vindication for non-conforming conduct), the infantilisation of children with Down’s syndrome (the young appearance of people with Down’s syndrome means that their misbehaviour is infantilised, i.e. constructed as conduct ‘normal for a child’) [iv], and the public acceptance of Down’s syndrome (i.e. parental perceptions of a greater tolerance toward their children in contemporary society).
In another study, I capture how mothers frame the presence of Down’s syndrome as a source of happiness, strength, and personal growth. [v] While mothers often describe initial negative and rueful reactions after a diagnosis, interpreting Down’s syndrome as a loss of maternal expectations and the ‘death’ of an imagined child, they universally articulate a position of self-acceptance and identify how more positive emotions were experienced later in their child’s life. This move – from a lack of orientation towards their child to feelings of recognition, love, and valorisation – is achieved over time and in several forms, such as drawing on the support of family members, partners, and other parents of children with Down’s syndrome who help them to normalise, and construct a positive acceptance of, their situation. I also explain how mothers construct what I have elsewhere called a ‘courtesy identity’. This is a play on Erving Goffman’s (1963) concept of courtesy stigma to show how parenting a child with Down’s syndrome and being part of this ‘world’, rather having a stigmatising quality, becomes an integral and positive element in a mother’s reframing of self. One mother explains:
[My son] gave me a purpose in life. He brought a different perspective to how life can be and brought out qualities in me that I didn’t know I had. [ . . . ] I’m a mother, teacher, cook, cleaner, therapist, psychologist. I’m his intuition, his middleman, his speaker. I would be lost without him, with so much time to spare and no purpose in life.
Many of the mothers I spoke to describe how they rework their identity-kit and how they become advocates or political activists for their children. What is more, some mothers embrace their status of being, as one mother claims, a ‘Down’s syndrome mother’. This discourse is often supplemented with mothers becoming mother to other children with Down’s syndrome whereby they articulate an inclusive and collective sense of parental responsibility, the restitution of kinship here serving to enlarge what another mother calls the ‘Down’s syndrome family’. Not all mothers explicitly identify themselves along these lines yet they acknowledge their advocacy role, how their child has changed how they see the world, and how they have become better parents because of their child, thus enabling them to transform their lives and orient themselves towards their child and similar others. Thus, a potentially ‘discrediting’ (Goffman 1963) identity is reworked into a crediting one by seeing the child as offering mothers ‘the gift of their own self-knowledge’ (Rapp 1999: xiii).
Such strong identities and positive sentiments have gained greater traction in recent years through various forms of media, including parents’ blogs and social networking websites. As an example, the World Down Syndrome Day page on Facebook (with, at the time of writing, just under 19,000 members) provides parents with an outlet to not only voice concerns and ask questions to ‘wise’ others (Goffman 1963) but also to welcome new members into their community (or the ‘Down’s syndrome family’, if we are to use the term cited above), share amusing and heartening media (poems, photographs, videos, etc.) of and about their children, and celebrate life events such as birthdays, successful surgeries, awards and prizes, prom night, the first day of school, and so on. The World Down Syndrome Day Facebook page, among many others, is also replete with positive news stories. Looking back over the past few months, one can view tales ranging from a marriage proposal to the renaming of a school gym after a cheerleading student with Down’s syndrome, [vi] from a child starring in a TV advert to another being given a national ‘goal of the month’ award after scoring a penalty at half-time during a Scottish football game.
These outputs ignite the formation of what Ginsburg and Rapp (2015) call a ‘disability public’, a term used to ‘call attention to how people with disabilities and their allies are interpellated and materialised through a range of media, across widely distributed networks of people with shared experiences of disability’. For Ginsburg and Rapp, these constitute an emergent form of recognition and a location for alternative engagement. Adopting this concept, I suggest that media and other outputs – books, blogs, websites, social networks (Facebook, Twitter), YouTube clips, art (Judith Scott, Chris Rush, and Josie Webster pieces/exhibitions, Shifting Perspectives, etc.), and documentaries/television and film (e.g. Where Hope Grows, Lauren Potter in Glee), among others – help construct a Down’s syndrome public in which new social imaginaries of human difference are erected and people who have Down’s syndrome, together with their parents, are (re)constructed as occupying ‘inhabitable worlds’, giving them a future as well as a meaningful present.
This imaginary and formation of a Down’s syndrome public – enabling what Ginsburg and Rapp (2015) call an ‘existential repositioning’ – is in tension with the troubled relationship that the condition holds with prenatal technology. What I have shown here, to put it simply, is that there are two competing ways of enacting Down’s syndrome (at least in my own research and observations). Within the medical realm, where discourse shapes how people come to view and experience bodily difference, the condition is configured as a negative outcome. Among parents of those with Down’s syndrome, everyday life is constituted – despite a range of clear and complicated challenges – as celebratory, life-changing (for the better), and not the disaster it was initially believed to be.
While the unborn foetus with the condition is commonly constructed, especially within medical discourse, as problematic, as inherently inhibiting (for both the child and parent), and, ultimately, as disposable, the born child with Down’s syndrome is accepted and often embedded in positive configurings. The existence of two orientations to Down’s syndrome, as outlined in this article, is undoubtedly a simplification of an immensely complex issue and I certainly do not mean to suggest that these are its only two orientations. However, they are two which have appeared in my own work. Thus, by troubling and dissecting the taken-for-granted category of one of the most common yet complex genetic conditions, we can see how ‘Down’s syndrome worlds’ can be made both inhabitable and uninhabitable.
I would like to thank Michele Friedner for inviting me to contribute to the ‘Inhabitable Worlds’ series and for her vital editorial support with this article. I also extend my gratitude to the many fantastic participants who made my research possible and the Economic and Social Research Council (ESRC) for funding a project of great personal and professional interest to me.
[i] Interestingly, many health care professionals in my study were critical of prenatal screening for Down’s syndrome. In addition to being described as inaccurate (depending on which form of screening is undertaken, i.e. nuchal translucency or quadruple screening) and inciting anxiety in pregnant women, screening was defined by some as a ‘eugenic’ practice, with one midwife referring to it as ‘killing another human being because they happen to be a bit different’. This is because several of them that I interacted with viewed Down’s syndrome as compatible with life. Such criticisms, however, were often silenced owing to them, as part of their professional duties, enacting what they viewed as the principles of informed choice and non-directive care. Expanding on this point is outside the scope of this article.
[ii] I build on these ideas in several other publications and my forthcoming monograph Prenatal Testing and the Politics of Reproduction: An Ethnography of Down’s Syndrome Screening (working title) to be published by Routledge.
[iii] It will be very interesting to follow this trend over the next few years given that non-invasive prenatal testing (NIPT), a highly accurate form of screening for Down’s syndrome and other genetic conditions, is currently being trialled in the NHS.
[iv] Admittedly, parents in this study had children with Down’s syndrome who were under the age of 21. If the child was older (i.e. a fully grown adult), this infantilisation would possibly not occur.
[v] In this small-scale study, I focused exclusively on mothers. I made efforts to recruit fathers as well as mothers but this proved to be extremely difficult. The reasons for this are still unclear to me. One guess is that I recruited participants through the UK Down’s Syndrome Association mailing list and Facebook groups for parents of children with Down’s syndrome – spaces which were occupied largely by women. As such, my discussion here is one which, while important, is narrowed by its focus. However, it is clear in the autobiographical accounts of fathers who have a child with Down’s syndrome (e.g. Austin 2014; Bérubé 1996; Daugherty 2015) that a focus on the experiences of men – or fathers and mothers together – would be valuable.
[vi] This story was widely reported in the media after a cheerleader with Down’s syndrome was bullied during a basketball game and, in response, players walked off the court during a time-out to confront the perpetrators.
Austin, P. 2014. Beautiful Eyes: A Father Transformed. New York: W.W. Norton and Company.
Bérubé, M. 1996. Life As We Know It: A Father, a Family, and an Exceptional Child. New York: Pantheon Books.
Clark, B. 2008. A Mother Like Alex. London: Harper True.
Daugherty, P. 2015. An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter. New York: HarperCollins Publishers.
Flaherty, E.M. and Glidden, L.M. 2000. ‘Positive adjustment in parents rearing children with Down syndrome.’ Early Education and Development 11(4): 407-422.
Friedner, M. 2015. Valuing Deaf Worlds in Urban India. New Brunswick, NJ: Rutgers University Press.
Ginsburg, F. and Rapp, R. 2015. ‘Making disability count: demography, futurity, and the making of disability publics.’ Somatosphere. Available at:
http://somatosphere.net/2015/05/making-disability-count-demography-futurity-and-the-making-of-disability-publics.html [Accessed: 04 Jun 2015].
Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.
Groneberg, J.F. 2008. Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down’s Syndrome. New York: Penguin Group.
Lewis, S. 2008. Living with Max. London: Vermilion.
Rapp, R. 1999. Forward. In: Layne, L. (ed.). Transformative Motherhood: On Giving and Getting in a Consumer Culture. New York: University Press, pp. xi–xix.
Rapp, R. 2000. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. London: Routledge.
Skotko, B.G. 2005. ‘Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers.’ American Journal of Obstetrics and Gynaecology 192(3), pp. 670–677.
Soper, K.L. 2009. Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Bethesda, MA: Woodbine House.
Van Riper, M. and Choi, H. 2011. ‘Family-provider interactions surrounding the diagnosis of Down syndrome.’ Genetics in Medicine 13(8), pp. 714–716.
Gareth M. Thomas is a Lecturer in Sociology in the School of Social Sciences at Cardiff University. He is a sociologist who is interested in – among other things – medical encounters, disability, health and illness/wellbeing, genetics and the family, social stigma, risk, health technologies and ethics, interactionism, reproduction, STS, community, and ethnography. He is Co-Convenor of the Medicine, Science and Culture Research Group (MeSC) at Cardiff University and Co-Book Reviews Editor for Sociology of Health and Illness.
Inhabitable Worlds is a series that examines the theoretical tools and approaches that scholars bring to the study of disability in the social sciences and humanities. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).
This series aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. In this interview, Bill Dressler responds to questions posed by series organizer Jeffrey G. Snodgrass.
How and why might cultural anthropologists and social scientists interested in health benefit from integrating biological variables/biomarkers into their research and analysis?
Outcomes. What I mean is that anthropological analyses are full of intriguing theoretical and ethnographic models proposing processes that operate at many levels, ranging from the molecular to the symbolic. Very often I find myself reading such analyses, only to get to the end thinking: “and……?” I’m waiting for the other shoe to drop, in the sense of what the implications of those processes might be for health or biological outcomes. That other shoe can be a biological outcome or a biomarker. For example, medical anthropologists are interested in various sorts of social relationships. These could be between a healer and client; among family members coping with a social or economic crisis; within a voluntary association — in short, social relationships that organize persons in any number of of ways and contexts. The epidemiologic literature teaches us that integration into a network of relationships is, generally, associated with better health status, assessed in a variety of ways; the problem is that the epidemiologic literature tends to deal only with social relationships that seem plausible from a generally middle-class, North American orientation. Therefore, much of the potential for understanding in detail how social relationships shape health outcomes in diverse settings is left unrealized. Furthermore, in anthropological analyses, the demonstration of the importance of a particular configuration of social relationships for health are also left unrealized. A focus on potential health outcomes would help to clarify these associations.
How would you respond directly to one potential cultural anthropological or social scientific critique of such an integrative “biocultural” approach?
One critique of such an approach is that it requires that we pay attention to measurement issues. While case-study material is useful for examining in detail the nature of social relationships, a clear demonstration of differences in health outcomes in relation to social relationships requires a more extensive approach to data collection, and especially the ability to differentiate empirically configurations of social relationships, so that these can in turn be compared to health outcomes. A biocultural approach generally requires greater attention to issues of research design and measurement than is encountered in cultural anthropology, and those issues can be regarded skeptically within the field.
What is one potential caution you’d have for cultural anthropologists or social scientists considering a biocultural approach?
Do not become a believer in magic bullets. What I mean is that biological outcomes and biomarkers are themselves often interpreted uncritically. An example is arterial blood pressure, which is something that I’ve studied a good bit. While arterial blood pressure is extraordinarily sensitive to the quality and quantity of social relationships, it is also influenced by a variety of other factors that must also be taken into account if you are going to incorporate blood pressure as a measure into your research. Viewing this the other way around, do not be seduced into thinking that you can treat someone’s self-report of, for example, the quality of social relationships as capturing the features of social relationships in which you are interested. Consciously and verbally expressed thoughts and perceptions cannot be accepted uncritically as measuring what your are trying to measure.
What is one piece of research (ideally your own) that points to the benefits of such an integrative approach?
There has been a great deal of attention focused on the nature of social support in the African American community. Some years ago we found that a reliance on kin versus nonkin for help and assistance in times of felt need had different associations with blood pressure, depending on other contextual factors. (This is a bit of an old paper, but it does a nice job of showing how an issue of theoretical interest in cultural anthropology can be better understood from a biocultural perspective.)
Dressler, William W. and James R. Bindon. (2000) “The health consequences of cultural consonance: cultural dimensions of lifestyle, social support and arterial blood pressure in an African American community.” American Anthropologist 102: 244-260.
What is a good reference that cultural anthropologists or social scientists interested in such an approach could use to get started?
Dressler, William W. (2005) “What’s cultural about biocultural research?” Ethos 33: 20-45.
William Dressler is a medical anthropologist with interests in culture theory, community studies, research methods, and especially the relationship between culture and disease risk. In his earlier work Dressler adapted models of psychosocial stress to examine the association between social and cultural factors and the risk of chronic disease, including cardiovascular disease and dysthymic disorder. His recent work emphasizes concepts and methods for examining the health effects of individual efforts to achieve culturally-defined goals and aspirations. He has developed a new concept, ‘cultural consonance,’ to define this link of culture and the individual theoretically and operationally. This work has necessitated the theoretical integration of cultural constructivist and social structural theoretical orientations, and the development of research methods for linking the cultural, the individual, and the biological. Dressler and colleagues have examined these factors in settings as diverse as urban Great Britain, the Southeast U.S., the West Indies, Mexico, and Samoa.
“Bioculturalism” aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. It is edited by Jeffrey G. Snodgrass.
Introduction: “Bioculturalism: The Why and How of a Promising Medical Anthropological Future” by Jeffrey G. Snodgrass
I’m perplexed by cultural anthropology’s antagonism toward biology, with culture and biology more typically treated as providing alternate and competing, rather than complementary and synergistic, explanations for human functioning. This is particularly strange to me—a practicing cultural anthropologist with a background in molecular biology—when even medical anthropologists fail to account for the role biology plays in shaping human health. Wouldn’t such a consideration enrich our comprehension of the interplay between sociocultural milieus and human bodies?
“Biocultural” anthropologists do now routinely investigate human health and other topics. However, they are a small minority, both within medical anthropology and anthropology more generally. Though small, they are potentially important. To me, this group’s synthetic approach represents one promising future for anthropology, which would be capable of producing more comprehensive explanations for human function (and dysfunction), and in the process bridging divisions both within our discipline and between anthropology and other natural science disciplines.
To sketch a blueprint for such a future, I have invited a group of self-professed “biocultural anthropologists” to address the question, “How might cultural anthropology gain by taking biology more seriously?” Responses to this issue will run in a new series, Bioculturalism, which aims to get anthropologists and closely-related others to talking seriously, and thinking practically, about how this possible anthropological future might unfold, and to what positive ends.
To kick off this series, I respond to this topic myself, which, as you’ll see below, I’ve parsed into five interrelated questions. My response foreshadows themes touched upon by the other contributors. Also today, you’ll hear how Bill Dressler responds to my questions, followed by Emily Mendenhall, Chris Lynn, and Greg Downey every other Monday. This will conclude the first part of this series, with a planned second set of contributions to follow.
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How and why might cultural anthropologists and social scientists interested in health benefit from integrating biological variables/biomarkers into their research and analysis?
In a recent biocultural study of the well-being of Indigenous Sahariya “conservation refugees” in central India, I assessed these individuals’ stress and health via the salivary analytes cortisol and alpha-amylase, self-reports of psychosomatic stress and emotional experience (utilizing locally validated psychiatric scales), in-depth person-centered interviews, and ethnographic observations. These alternate sources of data told interlocking but somewhat unique stories about the state of these Sahariyas’ bodies and minds. Where the data streams parallel each other, I feel more confident in my conclusions. Where data diverge and even appear contradictory, I am forced to challenge my assumptions, acknowledge ambiguities and limits both in my own knowledge and in prevailing theories, and generally think more deeply about the nature of my findings.
More recently, related to my ongoing studies of distressful online gaming as a form of “addiction” to the Internet, I’m planning a gene-by-environment (GXE) interaction study, where I’ll assess the relative power of genetic as compared to sociocultural resilience/ vulnerability markers to predict compulsive patterns of online play. For the genetics, this will require examining individual gamers’ DNA to determine the extent to which they carry known single nucleotide polymorphisms (SNPs) associated with addiction (related to the body-brain’s stress reactivity and reward circuitry, for example). For the sociocultural variables, I envision assessing gamers’ relative degrees of social distress, e.g. by tracking self-reported early trauma, stressful life events, and also relative “consonance” or “dissonance” with culturally-sanctioned models of the good life (utilizing the “cultural consonance” approach pioneered by Bill Dressler, whom we’ll hear from next). I hypothesize that higher offline social distress—rather than the genetics, and certainly not exclusively the genetics—propel gamers into problematic patterns of online play, as they seek escape and respite from their life’s problems. It is one thing for cultural anthropologists to (rightfully) critique the now culturally and medically dominant “disease model” of addiction, where the roots of behavioral compulsions are located in neurotransmitter imbalances and “broken brains,” with often scant attention paid to how environmental and sociocultural factors might also drive such behavior. It is quite another matter to demonstrate the potentially even superior predictive power of sociocultural factors on such health outcomes (which I expect to find), in studies that statistically model genetic and sociocultural factors (as potentially distal causes) side-by-side in the same sets of equations.
Though challenging, the gains of thinking across biological and cultural levels are multiple. We enrich our theories and understanding of the phenomena at hand—the distress experienced by Indigenous refugees and online gamers in my current research—by building more complete explanations for both their causes and health consequences. Rather than posing at the outset false dichotomies, we are able to identify potential biocultural synergies, like environmentally-driven “epigenetic” patterns of gene expression, which can also be mapped through now known techniques (as I plan to do in my Internet study). Further, we will almost necessarily have to collaborate with people from other fields, expanding our knowledge and horizons in the process. All in all, our research has a better chance of leading to both more valid and also more broadly authoritative results. The latter is not trivial. Relying at least in part on methods and perspectives developed in other fields, our results and subsequent explanations and theories will be framed in ways that can be better appreciated outside of narrower cultural anthropological circles.
How would you respond directly to one potential cultural anthropological or social scientific critique of such an integrative “biocultural” approach?
Some cultural anthropologists fear that incorporating biology into their studies risks reductionism and even racism and sexism. These are fair concerns, given that our disciplinary history is intertwined complexly with colonialist, racist, and sexist agendas, where biological theorizing has been used to attribute fixed and essential identities to colonized peoples, racial minorities, wo/men, and others. However, contemporary biologists are now exquisitely attuned to the manner that biological structures and processes respond flexibly to their environments, as demonstrated in innumerable examples of human neuro- and corporal “plasticity.” As current biology research amply demonstrates, genetic makeup is often less important than how those genes are epigenetically expressed (and even programmed) in response to environmental cues. Biological systems, it seems, are just as malleable—and indeed just as complex and unpredictable—as sociocultural ones. As such, biology is no longer thought of as necessarily underlying and thus constitutive of psychological, sociocultural, or other systems. Rather, our dual biological and cultural inheritances can be understood as complexly interacting systems that mutually constitute each other. As such, a fear of reductionist thinking is no longer a valid justification for avoiding serious engagement with the biological and other natural sciences, as Maurice Bloch eloquently argues in his recent book, released in 2012, Anthropology and the Cognitive Challenge.
What is one potential caution you’d have for cultural anthropologists or social scientists considering a biocultural approach?
Don’t imagine that incorporating biomarkers into a medical anthropological health study will provide magical solutions to all your analytical and theoretical problems. In fact, the case is more nearly the opposite: you will have more to think about and consequently more problems to solve, as you struggle to make sense of potentially conflicting data. As I suggested above, a biological measure might suggest an alternate health story, but there is no reason to assume a priori that this story should take precedence over one suggested by the sociocultural data.
What is one piece of research (ideally your own) that points to the benefits of such an integrative approach?
I would suggest, first, my recent study of stress telomere shortening among central Indian conservation refugees. I do believe that psychosomatic stress, related to an intricate set of overlapping arousal systems, underlies and thus helps to explain innumerable health problems, as masterfully demonstrated by researchers like Robert Sapolsky, as well as by biocultural anthropologists such as Carol Worthman and her students. Likewise, good evidence suggests that telomeres—termini that cap and protect our chromosomes—could serve as human chronometers. Telomeres erode naturally with cell division and aging, leading some to suggest that their length might be a good proxy for overall health and even longevity. Both stress and telomeres, then, would seem to be “master” systems of explanation that could be seen as revealing and even underpinning a variety of human health processes. However, both psychosomatic stress and telomere length are deeply responsive to environmental cues, leading myself and my collaborators to wonder if the extreme stress experienced by the Indigenous Sahariya featuring in our study might manifest itself on the cellular and chromosomal level. We demonstrate this to be the case, pointing to the way that both biological and also politically-driven environmental changes in concern propel health outcomes in this non-Western context.
I’d also suggest a few of my recent online gaming papers. In one, my collaborators and I suggest—rather than empirically demonstrate—that interactions between underlying neurobiological and psychological faculties (such as dissociation) and culturally-produced “technologies of absorption” (like video games) together shape positive and negative online gaming experiences. In others, we explore links between stress, consonance with the culturally-sanctioned good life, and problematically distressful gaming.
Stress and telomere shortening in India:
Zahran, S., Snodgrass, J. G., Maranon, D. G., Upadhyay, C., Granger, D. A., & Bailey, S. M. (2015). Stress and telomere shortening among central Indian conservation refugees. Proceedings of the National Academy of Sciences, 112(9), E928–E936. http://www.pnas.org/content/112/9/E928.abstract
Online Gaming in the U.S.:
Snodgrass, J. G., Lacy, M. G., Dengah II, H. F., Fagan, J., & Most, D. E. (2011). Magical flight and monstrous stress: Technologies of absorption and mental wellness in Azeroth. Culture, Medicine, and Psychiatry, 35(1), 26–62. http://link.springer.com/article/10.1007/s11013-010-9197-4
Snodgrass, J. G., Lacy, M. G., Dengah, H. F., Eisenhauer, S., Batchelder, G., & Cookson, R. J. (2014). A vacation from your mind: Problematic online gaming is a stress response. Computers in Human Behavior, 38, 248–260. http://www.sciencedirect.com/science/article/pii/S0747563214003392
Snodgrass, J. G., Dengah, H. J. F., & Lacy, M. G. (2014). “I Swear to God, I Only Want People Here Who Are Losers!” Cultural Dissonance and the (Problematic) Allure of Azeroth. Medical Anthropology Quarterly, 28(4), 480–501. http://onlinelibrary.wiley.com/doi/10.1111/maq.12116/abstract
How might cultural anthropologists or social scientists interested in such an approach get started?
Just one more piece of advice at this point: Reach out and collaborate with outsiders to cultural anthropology. These biocultural problems are too large to tackle all by our lonesome, indeed, too large for any single discipline to solve. Plus, you’ll have much more fun having at these problems in good company.
Jeffrey G. Snodgrass, Professor of Anthropology at Colorado State University, and member of Somatosphere’s editorial collaborative, has published widely on caste, performance, and religion in India. He is currently working on two projects. First, he is interested to understand how culture-specific absorptive experiences, achievement motivations, and social interactions contribute to virtual worlds’ therapeutic and addictive dimensions. This research has begun with primarily U.S. gamers with plans to extend the project to other parts of the world. Second, in NSF-funded research, he is working to understand how loss of access to forest spaces and resources – for example, through deforestation and displacement from a newly established wildlife preserve in central India – impact indigenous peoples’ health and systems of healing. He hopes empirical results from these and other projects will help him fuse insights from cultural psychiatry and neuroscience into more synthetic “biopsychocultural” accounts of mental health resilience. Follow him on Twitter: @GodfreySnorgyrs
“Bioculturalism” aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. It is edited by Jeffrey G. Snodgrass.
The public health implications of HIV criminalization: a special issue of Critical Public Health by Michelle Pentecost
The latest issue of Critical Public Health features a Special Issue on HIV Criminalisation and Public Health. Guest editor Eric Mykhalovskiy outlines the public health implications of HIV criminalization: past, current, and future research directions:
While public health remains the primary site of authority for preventing HIV transmission, recent shifts in the biopolitics of HIV have heightened tensions in the institutional and discursive relations through which the sexual lives of people living with HIV and broader HIV epidemics are regulated. Most notably, over the past decade, criminal justice responses to HIV have gained considerable traction. The growing use of the criminal law to regulate perceived HIV transmission risks has occasioned considerable controversy among people living with HIV, community-based AIDS organizations, health-care providers, public health authorities, prosecutors, judges, and the legal community. This article introduces a special section of Critical Public Health focused on the public health implications of HIV criminalization. The article reviews past and current work on the topic, situates the contributions made by the articles published in the special section, and outlines directions for future inquiry.
Barry D. Adam, Patrice Corriveau, Richard Elliott, Jason Globerman, Ken English and Sean Rourke
Responses to the largest surveys of HIV-positive people in Ontario show that most either disclose to or do not have partners who are HIV-negative or of unknown status. Non-disclosure strategies and assumptions are reported by relatively small sets of people with some variation according to employment status, sexual orientation, gender, ethnicity, and having had a casual partner. Interviews with 122 people living with HIV show that disclosure is an undertaking fraught with emotional pitfalls complicated by personal histories of having misread cues or having felt deceived leading up to their own sero-conversion, then having to negotiate a stigmatized status with new people. In gay communities, constructions of the self as individual actors in a marketplace of risk co-exist with the sexual etiquette developed throughout the AIDS era of care of the self and other through safer sex. Among heterosexual populations, notions of responsibility show some divergence by gender. The findings of this study suggest that the heightened pressure of criminal sanction on decision-making about disclosure in personal interactions does not address difficulties in HIV transmission and is unlikely to result in enhanced prevention.
In Canada, there has been a rise in criminal HIV non-disclosure cases where public health records have been subpoenaed for use in police investigations and criminal court proceedings. In particular, public health nurses’ written counseling notes, originally collected for the purposes of creating a record of treatment and a plan of care, have been used as evidence against their clients. This article engages sociologically with this issue by analyzing whether and how this criminal law development has affected public health nurses’ reasoning and documentary practices in settings of HIV post-test counseling sessions. The paper argues that variations in nurses’ inscription styles result in part from considerations about the criminal law, which indicates the influence of ‘medico-legal’ relations that connect health care and the criminal justice system. Implications for nursing practice and the broader goals of HIV prevention are discussed. Data are drawn from interviews with thirty nurses working at four public health units in Ontario.
Catherine Dodds, Matthew Weait,, Adam Bourne and Siri Egede
The present qualitative research findings about how perceptions of criminal prosecutions for the transmission of HIV interact with the provision of high-quality HIV health and social care in England and Wales. Seven focus groups were undertaken with a total of 75 diverse professionals working in clinical and community-based services for people with HIV. Participants’ understanding of the law in this area was varied, with many knowing the basic requirements for a prosecution, yet lacking confidence in the best way to communicate key details with those using their service. Prosecutions for HIV transmission have influenced, and in some instances, disrupted the provision of HIV services, creating ambivalence and concern among many providers about their new role as providers of legal information. The way that participants approached the topic with service users was influenced by their personal views on individual and shared responsibility for health, their concerns about professional liability and their degree of trust in non-coercive health promotion approaches to managing public health. These findings reveal an underlying ambivalence among many providers about how they regard the interface between criminal law, coercion and public health. It is also apparent that in most HIV service environments, meaningful exploration of practical ethical issues is relatively rare. The data presented here will additionally be of use to managers and providers of HIV services in order that they can provide consistent and confident support and advice to people with HIV.
HIV criminalisation is a term that describes the criminal prosecution of persons in instances of HIV transmission, exposure and so-called non-disclosure of their HIV serostatus. In the United States (US), there have been over 500 reported instances of HIV criminalisation. Over the past decade, several negative consequences of HIV criminalisation have been identified, including its capacity to increase stigma and social injustice. In addition, scholars have built an evidence base demonstrating that HIV criminalisation has the potential to undermine HIV prevention and that it is thus harmful to public health. This article contributes to that evidence base by (1) combining Foucaultian studies of ‘governmentality’ with the sociology of ‘anomie’ to theorise the larger implications of HIV criminalisation for the institution of public health, and (2) presenting interviews with public health service providers working in Tennessee, USA. This state is an important site for studying the public health implications of HIV criminalisation because, between 2008 and 2012, it was reported to have led all American jurisdictions in prosecutions of HIV-specific criminal offences. Concentrating on discussions of post-test counselling, this article argues that a major system-level effect of HIV criminalisation is the propagation of an anomic affective climate, which makes it difficult to establish norms of HIV prevention.
A growing body of social science research has focused on the negative public health consequences of criminalizing the sexual transmission of HIV. I examine the criminalization of contagion in West and Central Africa and address a significant research gap: How do legislative environments that enable harmful laws to be applied become created in the first place? With stated aims of promoting human rights and public health objectives, HIV/AIDS-related laws have been created transnationally though the use of an omnibus model law. A group of legislative actors have problematized this United States Agency for International Development (USAID) funded model law, known as the USAID/Action for West African Region model law, or N’Djamena model law. This ‘harmonizing’ text led to the rapid spread of HIV/AIDS laws, including the criminalization of HIV transmission, across at least 15 countries in West and Central Africa between 2005 and 2010. The HIV model law was packaged and ‘sold’ to developing countries through the strategic use of best practice discourse. Best practice replications are enabled though a set of social and technological relations of use including the availability of mobile, standardizing texts. Although best practice standardization has been a key feature of global health institutions work activities in the HIV response over the past two decades, recent replications related to the criminalization of HIV transmission illustrate the potential public health dangers of ‘don’t reinvent the wheel’ thinking. I offer a normative critique of the transnational, text-mediated process that has produced highly problematic laws.
Gwaltney, John L. 1967. The Thrice Shy: Cultural Accommodation to Blindness and Other Disasters in a Mexican Community. New York and London: Columbia University Press. 219 pp., including four appendices, references, and index.
I once had a housemate who, each year for a decade running, would set aside a week to take a break from the hyperkinetic pace of her life so she could read back through her personal journals and devote time to introspection. Unlike her, I have not made a habit of engaging in a systematic rereading of personal notes and favorite texts beyond the needs of teaching and scholarship, relying instead on memories as a means to enjoy past experiences. Revisiting The Thrice Shy: Cultural Accommodation to Blindness and Other Disasters in a Mexican Community by John Langston Gwaltney has proved an intriguing exercise in both memory work and self-reflection.
I first encountered—or, better put, discovered—The Thrice Shy in response to an assignment in a graduate course in the 1980s. Known simply as “Anthro 206,” the class was taught by Frederick Dunn as a first-year core requirement of the UC Berkeley/San Francisco joint program in medical anthropology, where I began my studies in 1983. Fred, who was a fabulous teacher, mentor, and, later, dear friend, was an MD/PhD with a passion for tropical diseases, and from the very start he sought to instill in us the importance of an integrative approach without regard for demands imposed on us elsewhere that we proclaim our allegiance to sociocultural versus biocultural studies of health, illness, and suffering. Indeed, perhaps my most memorable assignment throughout my full graduate career came from Fred in “206.” Our charge seemed straightforward enough: choose a medical problem, master all the literature you could find on your topic, and then write about it from clinical, biological, and social perspectives. I was game: Fred was passionate about parasitology and his enthusiasm was, well, infectious, and I believed in his dictum, which can best be summed up as “know your disease.” Nevertheless, I was nervous about my efforts to master the relevant clinical literature, but I liked the idea of working on something exotic, tropical, and obscure, and so I forged ahead. I choose what I considered to be among the strangest diseases I could find, onchocerciasis, whose name many people find so impossible to pronounce that they instead refer to it as River Blindness.
As I soon discovered, it is one hell of a nasty disease. Onchocerciasis is caused by the parasitic worm Onchocera volvulus, whose vector is a Simulium black fly that breeds in shady, rushing streams and rivers where humans bathe, wash clothes, retrieve drinking water, and farm. Black flies harbor immature larvae that pass to human hosts through repeated bites. Onchocerciasis has long been endemic in tropical regions of Asia, Africa, and the Americas (and today it is classified as a NTD or “neglected tropical disease” (see the World Health Organization and the Centers for Disease Control and Prevention). Associated symptoms take years to develop: among the most noticeable signs of human infection consists of encapsulated, subcutaneous nodules within which adult worms nest and reproduce.
The location of these nodules corresponds to where the body has been exposed to repeated fly bites, and, thus, symptoms can differ by gender, age, and economic activity. For instance, in the highlands of Oaxaca, Mexico where John Gwaltney worked, black flies—and, thus, onchocerciasis—proliferated in small, shady coffee groves, coffee being an important cash crop villagers grew so they could afford to buy maize, a staple upon which they depended for survival yet, because they were too land-poor to grow enough for the year, they needed ways to purchase more during periods of scarcity. As such, disease, diet, and agriculture were inextricably intertwined in Gwaltney’s field site.
As Gwaltney reported, coffee fields were worked primarily by men, who often removed their shirts when they labored and, thus, men’s longterm exposure was marked by nodules clustered on the torso; women, on the other hand, were most likely to be become infected when they visited streams to retrieve water, do laundry, and bathe, and they were most frequently bitten on the neck and face. Children, in turn, were infected in various ways according to the economic and other activities in which they engaged alongside older children and adults.
The adult female parasite is magnificently prolific, producing thousands of microfilariae daily, which make their way into the bloodstream, lymphatic system, and other tissues. As they circulate throughout the body of a human host, some lodge in ocular tissue where they cause lesions that lead to progressive and irreversible blindness. The parasite completes its lifecycle when flies bite infected human hosts and the microfilariae enter the gut and thoracic tissue of the fly, where they then grow into larvae.
Although treatments have improved since then, in the early 1980s and, indeed, in the 1960s when Gwaltney was in the field, surgical lancing of nodules was the standard yet cumbersome and painful treatment, paired with chemotherapy that was known to kill some patients. Treatments ranged from being uncomfortable to grueling, where among the most noxious effects arise when microfilariae die under the skin and caused unbearable itching. Furthermore, recovered patients often returned home only to be reinfected. In some regions of the world, such as the Volta River Delta area of Ghana, onchocerciasis factored as a cause of (in)voluntary migration, where entire communities sometimes abandoned their fields and settlements because the disease was so noxious and debilitating. As this detailed passage demonstrates, I had been “bitten” by the O. volvulus bug, and thrilled when, finally, I discovered Gwaltney’s ethnographic account.
In the 1980s there was, of course, no such thing as the web, or Google, and, thus, any online library catalogue where a keyword or two could generate a surfeit of sources. Instead, one rooted out sources by sorting through card catalogues, perusing bookshelves in the stacks, combing through published bibliographies, and by word of mouth. Pushed on by Fred, my tenacious research efforts in UC’s libraries uncovered a smattering of texts specializing in tropical disease, parasitology, and water-borne scourges, and within a month I definitely knew my parasite. No one, however, seemed to be writing on the social dimensions of onchocerciasis. Among Fred’s favorite authors was Helmut Kloos, whose work on schistosomiasis (aka bilharzia) offered invaluable insights on how to think comparatively about water-borne diseases, but I was frustrated by the lack of such material specifically on “my” disease. And then, tucked away in the Lowie Library stacks at Berkeley, snuggled amongst other ethnographies on Mexico, I accidentally discovered The Thrice Shy, a thin little hardback book whose printed ochre jacket included a drawing of a young girl leading an elderly woman down a path, the woman holding a walking stick and the little girl leading her on with yet another.
As Gwaltney explains in his Preface, this book was based on a dissertation study entitled “Role of expectation of blindness in a Oaxaca village,” funded by NIMH in support of ethnographic data collected between May 1963 and March 1964. As the book’s jacket flap explains, “Onchocerciasis is only the most bizarre of a host of catastrophies [sic.] which assail the pueblo…[including] blindness, malaria, floods, droughts, fires, poisonous snakes, and other calamities.” Gwaltney’s research focused on the lives of Chinatec speakers of Yolox Pueblo, a small peasant settlement nestled precariously in the harsh, highland terrain of Oaxaca, Mexico. As he explained, Yolox reported the region’s highest infection rates for onchocerciasis (sometimes reaching as high as 90%). Gwaltney was a PhD student of Margaret Mead’s at Columbia, which certainly accounts in large part for his decision to target a social problem. One can sense Mead’s presence throughout, his prose reading much like hers: the writing is often crisp, informative, jargon-free, and organized, chapter by chapter, in a style not unusual for village studies of this era, with such headings as “Locale,” “Village Subsistence,” “Political Organization,” and “The Life Cycle.” The tone shifts significantly, though, in the four appendices (focused on field methodology, field note excerpts, the disease epidemiology, and relevant literature), where Gwaltney’s approach shifts to being more formal, dense, and, frankly, informative. Many contemporary readers—especially if they limit their attention to the ethnographic chapters—will find The Thrice Shy outdated, the style dull and stilted, the purpose somewhat elusive. Indeed, it is an odd little book, because although blindness was Gwaltney’s stated focus of inquiry, this concern is concentrated for the most part in a sixteen page chapter near the end entitled “Blindness in Yolox” and, then, in his third appendix. As a result, one must remain alert to detect references either to blindness or onchocerciasis, save for fleeting descriptions of a blind informant, the precariousness of local terrain, the words of a child who describes assisting a blind adult, or passing comments on how blindness affects economic survival.
To judge the book on these characteristics alone, however, is to miss what makes this a forgotten gem. Gwaltney’s work is noteworthy—and unusual—because of who he was, how he was trained, and what caught his attention as an ethnographer. An African-American man who was mentored not only by Mead but by Eric Wolf and Conrad Arenberg, among others, Gwaltney was always alert to the mundane hardships that characterized social, economic, geographic, and historical “marginality,” as he called it, both at home and abroad. (Indeed, among the most moving passages are when Yoleños speak about the terrible news “from [Selma] Alabama,” p. 3). Throughout this book Gwaltney draws a careful portrait of the entwined nature of socioeconomic inequalities in contemporary life, the historic origins of daily hardships, and how gender, age, and community structure “trauma” or local “disasters” and affect daily survival in a small scale, and cohesive, peasant community plagued by regional land disputes, seasonal hunger, and endemic disease. In these aspects alone Gwaltney’s work anticipates studies that would soon follow on the people “without history,” of structural violence, and on the gendered nature of socioeconomic inequalities. It is important to note that Gwaltney was careful never to portray Yoleños as victims; instead, as the book’s title implies, this is a study of “accommodation” in a wide range of ways, where blindness plays only one part in the larger drama of daily life.
More importantly, this is a ground-breaking work because Gwaltney embedded physical disability within a larger study of socioeconomic inequality, an approach that enabled him to wrestle with his own subjectivity. Gwaltney was blind almost from birth, and in every chapter one can detect his efforts to balance his determination to write a village study, focus on a set of interrelated social, economic, and health problems, while also reflecting on his own daily challenges of navigating local terrain. Gwaltney went to the field “equipped with only a tape recorder and braille typewriter” (see book jacket and Appendix I), and he trained his field assistants to transcribe notes in braille for him. Among my favorite sections of the book are those moments when Gwaltney places himself in the text, a radical move for this time period, certainly. He opens the book with a passage from Robert Redfield, who emphasized the importance of beginning fieldwork “with things visible” (p. 1). Gwaltney, in contrast, began with things audible, and he describes how mapping the community through sound was for him a key component of participant-observation. In turn, we learn of his own need to adapt as he quickly realizes the uselessness of the walking sticks he has brought with him from the States and, in turn, of the dangers of going virtually anywhere—blind or not—in or outside a settlement where one encounters steep pathways and uneven ground at every turn. In these ways, he begins to embody the experiences of local inhabitants infected with onchocerciasis. Especially important is his discovery of how invaluable children are to assisting the blind, how much these same children enjoy such tasks, and how important they are as key informants for his research, and as assistants in daily life. Gwaltney’s descriptions of economic survival are equally important: older peasant men can not aspire to “retiring” gracefully, as do their peers, if they are plagued by blindness, and elderly blind inhabitants—both male and female—may need to go on what Gwaltney describes as “begging expeditions” (sometimes to distant cities), inevitably accompanied by young children, to acquire enough cash to buy food and stay alive. These sorts of examples inform what Gwaltney references as “economic blindness,” which he considers a key to understanding village life.
As Gwaltney’s work underscores, however, onchocerciasis and associated blindness are just one of many assaults on this community. The Thrice Shy, then, is best understood as an unusual and provocative work for its time, perhaps even as an early experimental ethnography that anticipates both disability studies and the self-reflexive turn by several decades. Indeed, his committee seems to have recognized its ground-breaking effect: the study was awarded the Ansley Dissertation Award at Columbia, and after he completed his PhD, Gwaltney went on to lead an illustrious career as an anthropologist keenly sensitive to issues of social oppression. Gwaltney, who was Professor of Anthropology at the University of Syracuse in New York, was an advocate of “Native Ethnography,” an approach best represented by his better known work Drylongso: A Self Portrait of Black American , where he pushed back against AngloAmerican theorizing about African Americans’ lives. [i] Following his death in 1998—less than a month shy of his 78th birthday—the Association of Black Anthropologists established The John Langston Gwaltney Native Anthropology Scholarship, a prize that still exists today.
The Thrice Shy was for me a remarkable find in the 1980s. Although Gwaltney never paused to explain his title’s significance, the thought that one would be “thrice” rather than merely “twice shy” of calamity was a compelling way to think of life in Yolox Pueblo. Perhaps, too, the phrase offered a poignant reminder of the risks of being “bitten” in the field (be one a local resident or visiting ethnographer). Sadly, I’ve never met anyone else who has read the book, and so I continue to grapple with this on my own. Assuming my memory is reliable, I recall how impossible it was to locate a copy from booksellers so that I could have one of my own, and so I continued to check it out of the Lowie Library long after my paper was due so I could hold onto it a bit longer. Thanks now to the web, I am pleased to say I own one that’s inscribed with the name of Ivonne DeLaCruz. This same copy apparently shifted at some point to an “Anthro” collection, catalog #745142. In closing, I thank you, Ivonne, for relinquishing your copy. And I thank Fred Dunn for encouraging me to write that paper.
[i] For details see the obituary of John Langston Gwaltney (1928-1998) by Johnnetta B. Cole in American Anthropologist, September 1999, 101:3:614-616.
Lesley A. Sharp is the Ann Whitney Olin Professor of Anthropology at Barnard College, Columbia University, as well as a Senior Research Scientist in Sociomedical Sciences in the Mailman School of Public Health, Columbia University. As a medical anthropologist by training, Professor Sharp is most concerned with critical analyses of the symbolics of the human body, where her research sites range from cosmopolitan medical centers within the United States to urban centers in sub-Saharan Africa. Her current research focuses on scientists engaged in generating new, non-human sources of transplantable organs, including mechanical heart devices and xenotransplantation (where animals, and more particularly swine, define potential sources of usable parts). This project is most concerned with how scientists imagine the promises and moral consequences of their work.
“Forgotten Gems” are scholarly works published at least forty years ago (1975 or earlier) that have been largely forgotten or overlooked, but which deserve to be read by medical anthropologists and scholars in neighboring fields today. Each “Forgotten Gems” essay is envisioned as a loving, but not necessarily uncritical, profile of a specific article or book that fits this general description. This series is curated by Janelle S. Taylor.
What sources of creative insight and inspiration might scholars today find in the history of our field — in particular, in some of the paths not taken? What hidden treasures lie buried in overlooked and neglected works from the past?
With Lesley Sharp’s original essay, “The Ethnographic Vision of John L. Gwaltney: The Thrice Shy, A Forgotten Gem,” we initiate what we hope will become a series with a provocation and an invitation. Sharp’s reflections on Gwaltney provoke thought and curiosity, and may perhaps unsettle canons. You are invited as well to propose your own neglected favorites, for our collective reconsideration.
“Forgotten Gems” are scholarly works published at least forty years ago (1975 or earlier) that have been largely forgotten or overlooked, but which deserve to be read by medical anthropologists and scholars in neighboring fields today. Each “Forgotten Gems” essay is envisioned as a loving, but not necessarily uncritical, profile of a specific article or book that fits this general description.
Entries can vary in structure and style, but should be brief (about 1500 words), written in a conversational style (no jargon, please), and ideally will include full bibliographic details of the work in question. We are curious to read a discussion of what you see as interesting, provocative, admirable, or memorable about the work; why you think it has been forgotten; a discussion of your personal history with the work, such as when you came across it and how it impressed or influenced you; any thoughts you would like to share about other directions (not) taken in the recent history of the field; and your hopes for its future.
If you are interested in contributing to this series, please write to series curator Janelle S. Taylor, at firstname.lastname@example.org.
Daniel Jordan Smith’s AIDS Doesn’t Show Its Face: Inequality, Morality, and Social Change in Nigeria by Darja Djordjevic
University of Chicago Press, 2014, 208 pages
In Daniel Jordan Smith’s AIDS Doesn’t Show Its Face: Inequality, Morality, and Social Change in Nigeria, we confront AIDS as a total social fact of Nigerian society. In this, his third book, Smith, a seasoned anthropologist of Nigeria, presents conclusions that draw on his 23 years of amassed data. As such, the facility with which he organizes his confident analyses comes as no surprise, and yields a clearly written and well organized book—a boon to any social scientist. He is adamant that the book is meant to be more about Nigerians and Nigeria than about AIDS, but it is precisely the multiple products, effects, and consequences of the illness, integrated into various facets of social life that allow for AIDS to teach us something about Nigeria. Smith organizes his monograph into six chapters treating the domains in which he has observed the most profound changes in the past 23 years—urbanization, gender relations, religion, AIDS NGOs and civil society, kinship, and reproduction. He contends that these areas of social life are ones in which “people’s beliefs about and responses to HIV and AIDS offer significant insight into broader social processes that produce and reproduce social inequalities and their consequences for people” (19).
Smith’s AIDS research has centered on three (overlapping) populations: youth, married couples, and people receiving antiretroviral therapy. The data undergirding the book is quite substantial. In addition to several projects’ worth of participant observation and in-depth interviews, in 2001-2002 the author conducted an in-depth and highly detailed survey of 800 young Igbo-speaking migrants in major cities of northern and southeastern Nigeria. Nonetheless, he is adamant that he has learned the most from participant observation. Smith also cautions us that his knowledge of AIDS in Nigeria comes with a certain bias, as he is an expert on the Igbo-speaking Southeast. He admits to various differences in social experience between the Southeast and the mostly Muslim and Hausa-speaking northern half of the country, and that his scholarship has rung true more often for colleagues working in other countries and sub-Saharan African regions than for those studying the north of Nigeria. However, he insists that this does not delegitimize or weaken his arguments:
The Igbo people…are very much integrated into Nigerian society, and they share experiences with AIDS and with the consequences of various aspects of social change that are common across the country. It is my contention that much of what I observed in the Southeast applies in other parts of the country—perhaps most especially in other parts of southern Nigeria, where Christianity is also widely prevalent and many cultural traditions are similar to the Southeast. (27)
True to his assertion, throughout the book Smith casts “Nigerians” as the social actors of his arguments and conclusions. His overall intent is to analyze their social responses to AIDS as reflective of the complex junction between inequality and morality as people interpret and react to the consequences of social change.
In the first chapter, Smith uses his study of motorcycle taxi (okada) drivers to talk about the moral hazards of urban inequality. He describes the okada men as totemic figures whose experiences captured the realities of widespread changes in Nigeria. Popular opinion states that the profession’s very existence indexes the deterioration of family structures and reciprocal relationships in favor of money, consumption, and greed in a context of rising inequality. This is one of the major preoccupations of the book—Nigerians’ apprehensions and ambivalent experiences regarding urbanization, the increasing monetization of social and economic life, and the sense that disturbing new inequalities are both caused by and aggravating the demise of collective morality. Smith connects AIDS and okada drivers because they merge in stories of university girls ready to exchange sex for cash, and concludes that both are “symbols for the things that Nigerians see going wrong in their society” (50). It is clear, however, that they form a pair in his analysis because they are imbricated with inequality, and one cannot deny that there might be many other social spheres or categorical figures in Nigerian city life through which to understand AIDS, inequality, and morality with equal depth. Indeed, the last section of the chapter presents the “demise” of the okada, explaining that in 2009 Igbo-speaking state governments banned them as a result of their suspected connection to, and implication, in crime, especially a series of kidnappings for ransom. A longer ethnographic discussion of how Nigerians responded to such a move by the state, with relation to their own anxieties and moral judgments, would have enriched the chapter, especially because Smith states that the criminalization of okada drivers was in fact a way to blame one sector of the urban poor and successfully de-culpabilize the political elites. Furthermore, the deep relevance of rumor and gossip as social phenomena that index moral orientations, and the work that rumor does could have been more thoroughly explored, particularly since Smith admits that the relationships okada men purportedly had with university girls were not ones he could get either party to discuss openly.
In the chapter on gender inequality, sexual morality, and AIDS, Smith first portrays the social scene of rural-urban migrants, young vulnerable women, and married men engaging in extramarital sexual relations. It echoes the sociopolitical and economic realities of AIDS in many other contexts, in Africa and beyond, to anyone who is well read in medical anthropology. The major contribution here is to explicate how not only inequality, but also morality, are critical to how men and women navigate the terrain of gender relations and sexuality amidst AIDS. Condoms are widely viewed as symbols of sin because the very use of them implies that the user is promiscuous and reckless, and so people avoid them. This finding figures amongst certain clear-cut results from Smith’s research that are immediately relevant for public health interventions, though, as is often the case, the steps towards an attempt to change such cultural orientations are somewhat daunting.
Perhaps the strongest chapter is the one treating Pentecostal Christianity in Nigeria, and the moral representations and discourses around AIDS that the faith perpetuates. Given the wide reach and immense power of Pentecostal movements across sub-Saharan Africa these days, Smith’s skillful summary of that church’s effects in Nigeria is an excellent contribution to our field. In sum, he contends that “Pentecostal Christianity’s appeal in Nigeria is so strong precisely because it speaks to modern desires for wealth, consumption, and freedom from the obligations of kinship even as it condemns many of the social ills that Nigerians associate with these very transitions” (101). Indeed Pentecostal pastors promise that if one becomes born again and follows the word of God, he will be rewarded with economic prosperity, but simultaneously protest (against?) selfishness, greed, and corruption. Smith notes that unfortunately, by labeling AIDS as a moral failing and the result of sinful behavior (which one can overcome by repenting and becoming born again), Pentecostal churches perpetuate the shame and stigma that lead Nigerians to conceal their HIV status and eschew condoms, putting their partners and loved ones at constant risk. He also depicts the exaggerated and ostentatious wealth of many leading Pentecostal pastors, giving us a more vivid sense of the contradictions, ironies, and complexities that abound in the movement in an age of increasing inequality and poverty.
In his later chapters, Smith continues to offer us compelling portraits of how the swift changes in Nigerian society resulting from rural-urban migration, the influence of Western media, rising aspirations for material consumption, and the monetization of social life engender plentiful tensions and dichotomies—different values can mix and coexist. In the chapter on AIDS NGOs and civil society, he highlights the pull between Nigerians’ awareness and anger about a moral economy in which practices of patronage win over rules based on bureaucratic accountability, and the yet enduring moral pressures and social rewards for acquiring “ownership” of an NGO and thus establishing one’s career as a patron. These moral orientations and social realities comprise the messy lived experience of everyday life, and Smith makes it clear that we must always seek a careful and nuanced investigation of swift change in a society. He shows this well in the chapters on kinship and reproduction—Nigerians see migration as undermining both the affective and obligatory bonds of kinship, and yet they may simultaneously rally behind, depend on, and laud the migration of their family members. HIV+ women may do everything possible to conceal their status from their partners and deceive their entourage to some extent, but they do so in the hopes of and towards the goal of social and biological reproduction, of fulfilling the steps (marriage, parenthood) that make one a full adult in Nigerian culture.
It seems natural to consider AIDS as a total social fact in this analysis because Smith repeatedly insists that it is “particularly emblematic and evocative as a symbol of people’s anxieties about the contemporary moment in Nigeria [through] its direct relationship to social reproduction” (160). On the whole the monograph certainly convinces one of this. He is convinced that for HIV prevention, the single most crucial undertaking is undoing the moral stigma around condoms. While Smith sees dismantling the moralizing discourses about AIDS as a long-term and hefty challenge, he imagines a more feasible campaign to drive home the moral and ethical benefits of the condom tool as a tool for protecting oneself, one’s partner, one’s family, and society as a whole. This potential intervention is reduced to “public health messages,” which is disappointing after the dense cast of okada drivers, university students, Pentecostal pastors, NGO workers, married men, and migrants in the story that this book tells. How might these various social actors be engaged in such campaigns, with close attention to what is morally and politically at stake for them?
AIDS Doesn’t Show Its Face: Inequality, Morality, and Social Change in Nigeria is an ambitious and compelling monograph by a seasoned scholar making a timely contribution to medical anthropology. It is an especially pertinent book for those specializing in Africanist anthropology or working in West Africa.
Darja Djordjevic is an MD-PhD (Department of Anthropology) candidate at Harvard University. She recently finished her fieldwork in Rwanda, which entailed a multidimensional study of the national cancer program, and is now completing her archival research in Belgium and France. Her scholarly interests include global oncology, the noncommunicable disease movement, the ethics of care, understandings of specialization within medicine, the history of chronic disease in Africa, and transnational public-private partnerships.
Here is the first of two postings for this month’s “In the Journals,” featuring a lively collection of summer articles. Happy reading/browsing/downloading!
This article proposes the term “safety logics” to understand attempts within the European Union (EU) to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to explore the types of “safety” produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practitioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape.
This article explores how citizen participation was methodologically devised and materially articulated in the postdisaster reconstruction of Constitución, one of the most affected cities after the earthquake and tsunami that battered south central Chile in 2010. I argue that the techniques deployed to engineer the participation were arranged as a policy experiment where a particular type of public was provoked—one characterized by its emotional detachment, political engagement, and social tolerance. The case of Constitución, however, also shows that this public ran parallel to other forms of being a public not aligned with the experiment’s assumptions. More broadly, the article argues that while disaster studies need to acknowledge the generative capacities of public participation, science and technology studies should include disasters as a particular setting for participatory experiments.
Numerous studies document that higher education is associated with a reduced likelihood of depression. The protective effects of higher education, however, are known to vary across population subgroups. This study tests competing theories for who is likely to obtain a greater protective benefit from a college degree against depression through an analysis of data from the National Longitudinal Study of Adolescent to Adult Health and recently developed methods for analyzing heterogeneous treatment effects involving the use of propensity scores. The analysis examines how the effects of two “treatments” (at least some college education and attaining at least a four-year college degree) on latent depressive symptomology vary by background disadvantage, as indicated by having a low propensity for completing some college or attaining a four-year college degree. Results indicate that people from disadvantaged backgrounds realize a greater protective effect of higher education, either completing some college or attaining a four-year degree, against depressive symptomology than people from advantaged backgrounds. This pattern is more pronounced for people who attain at least a four-year degree than for people who complete at least some college education.
Julia Temple Newhook, Deborah Gregory and Laurie Twells
Over 80% of weight loss surgery (WLS) patients are women, yet gender is overwhelmingly absent in WLS research. This article discusses the findings of 54 interviews with twenty-one women and six men waiting for WLS in Newfoundland and Labrador, Canada. We critically examine the ways that gender shapes the meaning of WLS in these narratives. We explore gendered meanings in participants’ perspectives on their embodied experiences before surgery, social support as they decided to undergo the procedure, and their expectations for their lives after WLS. We draw on feminist theory to explain how these findings counter the dominant gender-neutral medical model of obesity.
Addiction research has demonstrated how recovering individuals need narratives that make sense of past drug use and enable constructions of future, non-addict identities. However, there has not been much investigation into how these recovery narratives actually develop moment-to-moment in drug treatment. Building on the sociology of storytelling and ethnographic fieldwork conducted at two drug treatment institutions for young people in Denmark, this article argues that studying stories in the context of their telling brings forth novel insights. Through a narrative analysis of both ‘the whats’ (story content) and ‘the hows’ (storying process) the article presents four findings: (1) stories of change function locally as an institutional requirement; (2) professional drug treatment providers edit young people’s storytelling through different techniques; (3) the narrative environment of the drug treatment institution shapes how particular stories make sense of the past, present and future; and (4) storytelling in drug treatment is an interactive achievement. A fine-grained analysis illuminates in particular how some stories on gender and drug use are silenced, while others are encouraged. The demonstration of how local narrative environments shape stories contributes to the general understanding of interactive storytelling in encounters between professionals and clients in treatment settings.
John Gardner and Clare Williams
An emerging body of literature in sociology has demonstrated that diagnosis is a useful focal point for understanding the social dimensions of health and illness. This article contributes to this work by drawing attention to the relationship between diagnostic spaces and the way in which clinicians use their own bodies during the diagnostic process. As a case study, we draw upon fieldwork conducted with a multidisciplinary clinical team providing deep brain stimulation (DBS) to treat children with a movement disorder called dystonia. Interviews were conducted with team members and diagnostic examinations were observed. We illustrate that clinicians use communicative body work and verbal communication to transform a material terrain into diagnostic space, and we illustrate how this diagnostic space configures forms of embodied ‘sensing-and-acting’ within. We argue that a ‘diagnosis’ can be conceptualised as emerging from an interaction in which space, the clinician-body, and the patient-body (or body-part) mutually configure one another. By conceptualising diagnosis in this way, this article draws attention to the corporal bases of diagnostic power and counters Cartesian-like accounts of clinical work in which the patient-body is objectified by a disembodied medical discourse.
Abeer Khalid and Carlos Quiñonez
A distinguishing feature of North American society is preoccupation with self-image, as seen in the ritualistic nature of bodily practices aimed at constantly improving the body. Nowhere is this more apparent than in the prevailing fixation with straight, white teeth. While there is an ever-expanding literature on the sociology of body, very little has been written on teeth in this context. Using literature from anthropology, biology, dentistry, sociology and social psychology, this study attempts to answer: (1) Why have straight, white teeth become a beauty ideal in North American society? (2) What is the basis for this ideal? (3) How is this ideal propagated? It demonstrates that dental aesthetic tendencies are biologically, culturally and socially patterned. Concepts from the works of Pierre Bourdieu and Michel Foucault are used to illustrate how straight, white teeth contribute towards reinforcing class differences and how society exercises a disciplinary power on individuals through this ideal. It is concluded that modified teeth are linked to self and identity that are rooted in social structure. Moreover, teeth demonstrate the ways in which class differences are embodied and projected as symbols of social advantage or disadvantage. Implications on professional, public health, sociological and political levels are considered.
Special Issue: Consuming habits: Today’s subject of addiction
This article aims to disturb the received wisdom ‘tidy house, tidy mind’ by tracing its emergence and consolidation: from psychoanalysis to clinical psychology through to philosophy and reality television. The contention here is that the commanding presence of the mirror as a clinical apparatus serves to eclipse a full consideration of the hoarding situation as one involving not only mental health professionals and clients, that is, ‘hoarders’, but also the materials of the heap – as the ‘hoard’ is read straightforwardly as a reflection of the hoarder’s mind. It is argued, further, that the conspicuous neglect of things, that is, material objects, in the modelling of the hoarding ‘problem’ – the aetiology of Hoarding Disorder is cast in entirely human terms – serves to frame ‘hoarders’ as individually culpable. By extending the forensic logic of both clinical and popular psychology, it is argued that such framing amounts to securing forced confessions, where hoarders are left to bear total responsibility for a situation, which is, ultimately, a question of distributed agency between human and non-human entities.
Kareen Ror Malone, Christopher R Bell and John L Roberts
As with any number of clinical ‘schools’ and approaches, Lacanian psychoanalysts encounter individuals whose presenting complaint is drug addiction. Psychoanalysis has often been underestimated in its effectiveness in treating addiction, data for other approaches being less stellar than often realized. Within the Lacanian orientation, addiction has been widely addressed, not as a specific syndrome but as a symptom with implications for the frame of the psychoanalytic work. In such Lacanian formulations, both clinical and cultural contexts are examined in disentangling the effects of drug use for addicted persons and within the social ideals, representations and prohibitions that undergird the value and significance of drug use in any given culture. Formal elements and functions of the process and products of speaking within psychoanalytic work inform Lacanian clinical practice. These elements can be discerned within individuals’ desires and speech and within the social contract. Lacanian concepts of subjectivity necessarily interact with the traditions and meanings inherent to Western societies. Such elements may be posited as the aftermath of the social necessity of speech, a process that fundamentally informs subjectivity. This article illustrates – using analysis of recent technological inventions – fantasies about technology, cultural representations of technology, and important parallels between technology and addiction. The authors take a psychoanalytic look at technology through current Lacanian clinical thinking on the subjective structure related to addiction.
This paper argues that the symptom, considered from a psychoanalytic perspective, has lost some of its protective function. For Freud the symptom contained an element of meaning – a symbolic element – that allowed the subject to resolve or contain a conflict. In recent times the power of this symbolic element has been eroded with the result that the subject has become more openly exposed to the cause of this conflict. This opens up a path for the subject towards a solution that is less dependent on the symbolic than it is on products that can have an effect on the mind and body. The author explores the various causes – science, capitalism and psychoanalysis – that contributed to the erosion of the power of the symbolic and he indicates how psychoanalytic treatment can have an effect on the changed status of the symptom.
Jameson M. Wetmore
This article explores the attempts in the United States in the 1970s to implement a new paradigm for automobile safety—crashworthiness, the idea that automobile passengers should be protected in the event of a crash. A large number of strategies were proposed, including air bags, seatbelt modifications, mandatory belt-use laws, and ignition interlocks. Many of these did not initially come to fruition, but they did give the automobile safety community a chance to experiment with different ways of distributing responsibilities between automobile occupants, automobile manufacturers, and, to a lesser extent, government agencies. These experiments helped pave the way for the successful implementation of a number of new strategies in the 1980s, 1990s, and 2000s.
Mark Lamont, Rebekah Lee
This article is among the first historical considerations of road safety in Africa. It argues that race and class, as colonial dualisms, analytically frame two defining moments in the development of African automobility and its infrastructure—“Africanization” in the first decade of Kenya’s political independence from Britain, 1963–75, and democratization in postapartheid South Africa. We argue that recent road safety interventions in both countries exemplify an “epidemiological turn” influenced by public health constructions of the HIV/AIDS epidemic. African states’ framing of road safety in behaviorist terms has obscured larger debates around redressing the historical legacies of racialized access to roads and the technopolitics of African automobility. Civic involvement in road safety initiatives has tended to be limited, although the specter of road carnage has entered into the public imagination, largely through the death of high profile Africans. However, some African road users continue to pursue alternative, and often culturally embedded, strategies to mitigate the dangers posed by life “on the road.”
The article explores the perspectives of Foucault’s notion of government by linking it to the debate on the ‘new materialism’. Discussing Karen Barad’s critical reading of Foucault’s work on the body and power, it points to the idea of a ‘government of things’, which Foucault only briefly outlines in his lectures on governmentality. By stressing the ‘intrication of men and things’ (Foucault), this theoretical project makes it possible to arrive at a relational account of agency and ontology, going beyond the anthropocentric limitations of Foucault’s work. This perspective also suggests an altered understanding of biopolitics. While Foucault’s earlier concept of biopolitics was limited to physical and biological existence, the idea of a ‘government of things’ takes into account the interrelatedness and entanglements of men and things, the natural and the artificial, the physical and the moral. Finally, the conceptual proposal of a ‘government of things’ helps to clarify theoretical ambiguities and unresolved tensions in new materialist scholarship and allows for a more materialist account of politics.
It is not only the physical digital media that pile waste upon waste in an era of built-in obsolescence driven by over-production attempting to balance the falling rate of profit. Energy used in the manufacture, employment and recycling of devices belongs to a system where waste is not merely accidental but integral to the operation of cognitive capitalism. Oil and gas, uranium and hydroelectricity all prey disproportionately on indigenous peoples, who are turned into economic externalities along with their lands. A parallel is drawn between the waste of power in generation and transmission, and the exploitation of human energy as excess under a cyborg capital that increasingly treats all humanity as external.
Peter O. Ebigbo, Elekwachi Chimezie Lekwas, and Nweze Felix Chukwunenyem
Brain fag was originally described as a culture-bound syndrome among West African students. The term “brain fag” literally means “brain fatigue.” Available literature indicates that brain fag symptoms usually present in formal academic settings when African students are required to transit to a reliance on written literature (as opposed to more traditional oral forms of information transmission) and to adapt to westernized, individualistic systems of education that, at times, oppose the values of relatively collectivistic African societies. Based on detailed observation of two typical and two nontypical cases of brain fag, the authors suggest that the syndrome may not be solely related to tensions in the academic sphere, but may function more generally as an expression of psychological distress that results from societal pressures that exceed the coping capacity of the individual. The brain fag symptoms, including lack of concentration, sensations of internal heat in the head and body, heaviness, and multiple somatic complaints, may constitute a defensive process which helps prevent a full-fledged decompensation.
Cha-Hsuan Liu, Ludwien Meeuwesen, Floryt van Wesel, and David Ingleby
Chinese immigrants in the Netherlands are less likely than other ethnic groups to utilize mainstream mental health care services. This study investigated the experiences of Chinese with mental health problems, to inform measures to make services more responsive to the needs of this group. Qualitative methods of analysis were applied to interview data in order to explore ways of finding help, barriers to accessing mainstream mental health care, experiences in care, factors jeopardizing the quality of care, and views on mental health services among Chinese migrants in the Netherlands. Rather than recruiting individuals with mental health problems, an indirect method was used in which ethnic Chinese participants were invited to tell us about one or more Chinese individuals in their social environment whom they regarded as having (had) mental health problems. Although most Chinese regarded mainstream Dutch care as the appropriate resource for dealing with mental health problems, many barriers to access and threats to care quality were reported. In contrast to the widely accepted view that cultural differences in health beliefs underlie the low utilization of mental health services by Chinese in the West, the main obstacles identified in this study concerned practical issues such as communication problems and lack of knowledge of the health system. Respondents also described concerns about entitlement to care and discrimination (actual or anticipated). Measures suggested by respondents for improving care included increased use of interpreters and cultural mediators, encouraging migrants to increase their language proficiency, and better dissemination of information about the health system. The article concludes with a discussion of the policy implications of these findings.
Comics and graphic narratives have grown in popularity over the past few decades, not just in the public but in academic writing and thinking as well. The recent publications of Comics & Media (Chute and Jagoda 2014), Graphic Medicine Manifesto, (Czerwiec, Williams, Squier, et al 2015) and Unflattening (Sousanis 2015) mark a new wave of critical texts that engage comics and the graphic form. The Manifesto, in particular, highlights the growing number of graphic narratives about health, illness, and medical encounters—works that anthropologists would consider illness narratives. Recognizing the increasing number of illness graphic narratives, Ian Williams (physician, cartoonist, and medical humanities scholar) launched graphicmedicine.org. Artistic, academic, and medical interest in these works is culminating in what is becoming known as the field of Graphic Medicine. Graphic Medicine is a term coined by Ian Williams and is defined as “the role that comics can play in the study and delivery of healthcare.” As an interdisciplinary focus of study, these works raise a series of questions for medical anthropology, medical humanities, science and technology studies, ethnography, and ethnographic method more generally. This new Somatosphere series, Image + Text, seeks to engage the potentiality of graphic narratives as they contribute and transform ways of seeing.
Dana Walrath (2013) noted that “graphic medicine is a way of seeing the world through others’ eyes.” As a way of knowing and communicating about the world, comics and graphic narratives combine text and image such that the interaction creates a “double orientation”…a “looking in more than one direction at the same time” (Lewis 2001, quoted in Sousanis 2015:64). It is a way of seeing structure, complexity, nuance, emergence, and multiplicity simultaneously. From assemblages and rhizomes (Deleuze and Guattari 1987), to knots (Ingold 2015) and networks (Latour 2005), anthropologists continue to wrestle with how to convey the complexities of social worlds and emergent and multiple orientations toward human life. Despite our concern for finding non-hierarchical and non-linear forms of expression and ways of knowing, ethnographies are primarily a translation of experience into written, textual form (Mead 1995; Clifford 1983). We are caught in a kind of “problem closure” (Hajer 1995), wherein our tradition of text forecloses our escape of the hierarchical and linear in the conveyance of social worlds. Comics allow us to ask how we can “orient” ourselves (to borrow a formulation from Ahmed 2006) toward the potentiality of images and away from the systematizing effects of text alone.
What are the conventions of comics such as attention to image and sequence, images and imagistic thinking as a way to see a different mode of existence, the role of gutters, and the embodiment of lines and drawing? Ethnographic drawing produces intriguing subjective and intersubjective moments wherein the drawing can be a self-reflexive moment for the artist. It can also be a moment where interlocutors readily and quite easily respond with memories and interactions upon seeing the drawing (Ramos 2004). Comics can coax an orientation toward interrogating theoretical concepts, the presence and absences of ways of knowing, and examinations of power relations in ordinary lived experience (Hamdy 2014; McMullin, in press). Comics are also particularly good at visualizing the mundane. Chronicles of daily interactions become meaningful as they are drawn and exemplified in the works of Alison Bechdel or Chris Ware. Thus this medium is well suited to address concerns that Povinelli (2010) raises regarding the “ordinary, chronic and cruddy” moments that lead to exhaustion or endurance in late liberal economies. The deployment of double orientations available to comics, the provocation of memories, connected imaginaries, communicating alternative perspectives, and an anthropology of the otherwise are precisely the concerns of anthropology, science, and medicine.
The Somatosphere series, Image + Text, will engage the landscape of graphic illness narratives. Posts will include book reviews and a series of essays that seek to create a critical dialog for a “graphic medical anthropology” (Hamdy 2014). While the conversation will be centered on the potential of comics in science, medicine, and anthropology, we want to examine the edges of that conversation by attending to ethnographic and illness narrative work that include image and text. We imagine this blog as not only analyzing images for their representational qualities, but rather considering what we can learn from the combination of text with image. We will consider questions of how we visually or imagistically (Stevenson 2014) tell other people’s stories. How we grapple with the methodological issues of what we see and record in the field, and what relations (human and non-human) need to be included to convey the “double orientation” of being immersed in the field. What can the production of comics and other graphic forms tell us about issues of embodiment, biopolitics, or biomedicalizaton? How do our relations of collaboration and translation as interlocutor, ethnographer/artist, or ethnographer and artist work to express subjective and intersubjective moments in complex social worlds that are fraught with illness and power relations embedded in a search for well-being?
Our next post will be up in a couple of weeks and will feature a review of the Graphic Medicine Manifesto, with interviews from the authors who are presenting the book at the 6th Annual Comics & Medicine Conference
We invite submissions for this series from scholars and artists working in the social sciences and humanities of medicine, health, and science as well as from researchers and practitioners in the biosciences and medicine. If you would like to submit an essay or book review, please contact us with a short (250-500 word) proposal to email@example.com. There is no strict deadline and submissions will be considered as they are received.
Ahmed, Sara (2006). Queer Phenomenology: Orientations, Objects, Others. Durham: Duke University Press.
Chute, Hillary and Patrick Jagoda (2014). Special Issue: Comics & Media, Critical Inquiry 40(3): 1-10.
Deleuze, Gilles and Félix Guattari (1987) A Thousand Plateaus: Capitalism and Schizophrenia, Trans. Brian Massumi. London and New York: Continuum.
Hajer, M.S. (1995). The Politics of Environmental Discourse: Ecological Modernization and the Policy Process. New York: Oxford Universiy Press.
Hamdy, Sherine (2014). Top of the heap. Somatosphere http://somatosphere.net/2014/03/top-of-the-heap-sherine-hamdy.html (accessed March 27, 2014).
Ingold, Tim (2015). The Life of Lines. New York: Routledge.
Latour, Bruno (2005). Reassembling the Social: An Introduction to Actor-Network-Theory. Oxford: Oxford University Press.
Lewis, David (2001). Reading Contemporary Picturebooks: Picturing Text. Londong: Routledge Falmer.
McMullin, Juliet (in press). “Cancer and the Comics: Graphic Narratives and Biolegitimate Lives.” Medical Anthropology Quarterly. doi: 10.1111/maq.12172.
Mead, Margaret (1995). Visual Anthropology in a Discipline of Words. In Principles of Visual Anthropology. Paul Hockings, ed. Pp. 3–12. Berlin: Mouton de Gruyter.
Povinelli, Elizabeth (2011). Economies of Abandonment: Social Belonging and Endurance in Late Liberalism. Durham: Duke University Press.
Ramos, Manuel João (2004). “Drawing the lines. The limitations of intercultural ekphrasis.” Working images: visual research and representation in ethnography. S. Pink, L. Kürti, and A. I. Afonso (eds). Pp 147-156. London: Routledge.
Sousanis, Nick (2015) Unflattening. MA: Harvard University Press.
Stevenson, Lisa (2014). Life Beside Itself: Imagining Care in the Canadian Arctic. Berkeley: University of California Press.
Taussig, Michael (2011). I Swear I Saw this: Drawings in Fieldwork Notebooks, Namely My Own. Chicago: University of Chicago Press.
Walrath, Dana (2013). Aliceheimer’s: Alzheimer’s Through the Looking Glass. Armenia: Harvest Publishers.
Juliet McMullin is an Associate Professor at the University of California, Riverside. Her work examines the intersections of knowledge production, political economy of health and community building. Her two ongoing projects include; an ethnography of the growing field of graphic medicine, the second is based on her earlier research and explores how to represent health inequalities in graphic narrative form. She can be reached via email at firstname.lastname@example.org
Stacy Leigh Pigg is a Professor at Simon Fraser University. Her work explores postcolonial social relations through the study of global health in Nepal. Her writing has often featured techniques of staging, voice, and juxtaposed points of view to communicate globalization and localization processes. She is currently converting canonical ethnographic works into graphic narrative. She can be reached via email at email@example.com
The presence of disability in American public culture is at once increasingly visible and yet still segregated and rendered invisible. In our multi-sited ethnographic research on Disability, Personhood, and “the New Normal” in 21st America, we are especially reliant on case studies across the spectrum of disability worlds to help us comprehend how the presence of this category is expanding our understanding of humanity. To understand this uneven process, we have been tracking the presence and absence of disability across sites like schools, labs, families, arts activists, and self-advocacy organizations, both mainstream and obscure, all in New York City. Here, we invoke “the spectrum” in two ways. First, it conveys a sense of our experience of disability in our study as “the broad range of varied but related ideas…which tend to overlap”. Second, it evokes the diagnostic language used to describe the increasing occurrence of a range of complex symptoms controversially classified together as Autism Spectrum Disorder (ASD) (DSM V). Since our research often involves projects linked to ASD, our title brings together these two sets of associations.
As our knowledge of disability words deepens, we have come to expect that each case study is revelatory of the emergence of (or resistance to) “the new normal,” standing both for itself and the larger project of redrawing the social map of disability inclusion. ndeed, we encountered the new normal emerging in that most public of spaces: Broadway. Denizens and visitors to New York are probably familiar with the TKTS booth in Times Square that offers steeply discounted theater tickets for day-of performances. It is the public face of The Theater Development Fund (TDF), a well-known non-profit founded in 1968 dedicated to assisting the theatre industry in NYC.
Probably less well-known is TDF’s recent vanguard work in making theatrical performances accessible to people with disabilities. TAP (theater accessibility program) offers well-designed accommodations for people with certified vision, hearing, and mobility impairments, including audio description headphones, open captioning, and sign interpreters at selected performances. In 2011, TDF took a step beyond these physical accommodation programs, founding the Autism Theatre Initiative (ATI). Beginning with performances of Disney’s The Lion King and Mary Poppins, and moving on to Elf matinees, ATI recently offered an autism-friendly performance for older teens and young adults and their supporters for a special matinee of The Curious Incident of the Dog in the Nighttime on November 30, 2014. In February, 2015, we joined a group of TDF volunteers in training to help out at the first autism-friendly Broadway performance of the play adaptation of Roald Dahl’s classic children’s book, Matilda, a hit about a preternaturally smart and second-sighted girl who saves herself and her beloved school teacher by unmasking and banishing the bully who runs their school, while also saving herself from a family that has no appreciation of her talents. The play, which has its harrowing moments, is nonetheless filled with talented child performers, creative stage sets, and the triumph of good over evil. In short, this is family fun that pretty much anyone can enjoy, and that underscores the value of being a person who is a bit different, and who has a finely honed sense of right and wrong. This seemed a well-chosen production for the anticipated crowd.
But children and adults with autism have often felt excluded from Broadway theaters, and TDF’s ATI set out to remedy these structural barriers. Working with actors, directors, and the large support staff of ushers, salespersons, and attendants, ATI negotiated changes in lighting, sound levels, and audience expectations: the professional staff were taught to expect a different level of noise and movement in Matilda audiences when people with autism were welcomed into the Schubert Theater. Likewise, after unfortunate experiences with local restaurants that had evicted patrons with autism who had gone out to eat after prior performances, ATI worked with nearby eateries to be sure they were autism-friendly, and received staff training on what to expect. They were listed and promoted on a laminated card – along with other items – and given out to families as they entered The Schubert.
The day of the performance was cold and crisp; we volunteers dressed in bright red TDF knit hats, with identifying t-shirts under our down coats, and carried bright red swag bags with the TDF logo, filled with the aforementioned restaurant directories, clear guides to who’s who in the cast, and an array of attractive tension-relieving “fidget toys” and earplugs to be given to those waiting to go in. The Schubert Theater is large; it seats almost 1500 people, and virtually all seats were taken for this performance which was for autistic audiences and their families, friends and allies only. As Philip Dallman, ATI coordinator, explained to the forty assembled volunteers during our training, the NYC area has enough people meeting that description to fill a Broadway theater, one of the locational advantages of creating innovative outreach to audiences with disabilities in the City.
Ticketholders had to stand outside, as lines were moved in, not an easy wait for anyone. Our job was to make audience members feel welcome as they lined up to enter the theater. These are people who are routinely made to feel out of place and marginal; our directions were to make clear that this experience was going to be different from the minute they spotted the theater. Indeed, there were so many volunteers eagerly greeting arrivals – like so many good spirited red-hatted elves – that we may have been a bit overwhelming. We were given clear instructions, spelled out on the introductory power point that people we approached may not want to make eye contact, that we may find ourselves moved to tears but under no circumstances were we to cry in front of the theatergoers. Five people in white t-shirts, with the word specialist in red letters across the back, had considerable experience working with people with autism; they were available at all times to help in situations that any volunteer could not handle, and we had their cell phone numbers on speed dial.
Inside, we helped families to find their seats, and also pointed out the quiet rooms – waiting areas outside bathrooms repurposed for this occasion — on each floor of the theater. Padded floor mats, “fidget toys”, bean bag chairs, and a quiet atmosphere made these popular locations for this crowd having to deal with the sensory overload created by a large crowded theater. In the quiet rooms, anyone overwhelmed by the adjusted sensory assault of the performance was free to take a break at any point; people with autism were encouraged to return to their seats whenever they were ready.
We spoke with dozens of volunteers, program coordinators and – of course—families in the audience. Every volunteer had a story that brought them to the performance, ranging from people with autism themselves, to neuroscientists who had autistic kin, to dancers with special ed interests, to siblings whose autistic brothers and sisters were in the audience, and parents and kids of all ages. Audience members were spellbound by and enthusiastically voluble and unruly about the magic that is Broadway. The performance was brilliantly orchestrated; the actors appeared unruffled by the noise and occasional shouts and nobody flinched when a squeeze toy was hurled upon the stage in Act 1, or a low din rumbled through much of Act 2. Specialists were clearly positioned on every level in case of difficulties. Afterwards, we were part of the brigade that helped to clear the theater efficiently and sympathetically.
One Sunday matinee, one instance of an autism-adjusted performance on Broadway. Cui buono? This event engaged many constituencies, we would argue, showing how one case can ramify out into a broad spectrum of public culture. Local restaurateurs learned how to adapt to new clients, theater staff — especially ushers — learned the meaning of “no judgment” (the informal ATI motto), and many people got to enjoy a hugely positive experience often denied to them because of the lack of tolerance for those with autism who are judged as inappropriate and disruptive in many public venues. Beyond this eye-opening, moving, and joyful day, TDF proclaims itself the greatest beneficiary: “We don’t just want everyone who participates to have a great day, we want to build new audiences for the future”, as Dallman enthusiastically put it during our training. Moreover, the ATI is part of a broader movement for changing the face of American public culture, part of the remarkable, longstanding Museums Access Consortium (MAC) of NYC, a volunteer-based association that brings together cultural practitioners, people with disabilities, and disability advocates to share experiences, learn from one another, and refine best practices with the aim of advancing accessibility and inclusion in cultural facilities of all types in the New York metro area.
Our “fieldwork on the spectrum” attends to the growing transformation of American public culture. Everyone involved, from toilet attendants to Broadway stars, from restaurant wait staff to families enjoying a relatively unstressed outing, experience what inclusion of life with a difference might be like, if the aspirations, rights, and accommodations needed to include a wide range of people with disabilities are really in place. After all, 2015 marks a quarter century since the passage of the Americans with Disabilities Act. Think about how rarely you see the audiences we are describing next time you go to theater, the museum, or the movies. Groups like ATI and MAC are in the business of changing that. We were privileged to witness one extraordinary afternoon, one case among many in slow but steady transformation. It’s about time.
Faye Ginsburg and Rayna Rapp (aka Fanya Rappburg when writing together), are both faculty members in the Department of Anthropology at New York University. Since 2007, they have been carrying out research on cognitive disability and cultural innovation, with an ethnographic focus on New York City. Based on that work, they are currently writing a book together entitled Disability, Personhood, and the “New Normal” in the 21st Century with the support of an NEH Collaborative Grant. They are both active in the NYU Council for the Study of Disability which they founded in 2006. At NYU, Faye Ginsburg is Director of the Center for Media, Culture and History and Rayna Rapp is Associate Chair and core faculty for the departmental program in Science Studies/Medical Anthropology.
“They used my ass and took advantage of me.” This was the story of Eddie Flowers, a former drug addict used in LSD experiments during the 1950s. Leaning forward, forearms on desk, Flowers spoke into the microphone on Capital Hill during the 1975 U.S. Senate hearings into secret government-sponsored research (known as the Church Committee hearings). Flowers died in 2009 and continued to regard his testimony to the Church Committee as the turning point in his self-understanding as a member of a vulnerable population who was exploited in U.S. National Institutes of Mental Health (NIMH) LSD studies in the 1950s.
“Some of those shots, some of those tests scared me to death. I mean they scared me actually.” This was the story of Wilmer Wedel, a former Voluntary Service worker for the Mennonite Church who was also used in NIMH’s LSD experiments during the 1950s. Leaning back from the dining table at his ranch house in rural Kansas, it was a story Wilmer Wedel told me in 2011 in which he insisted that he was not exploited despite his fear and powerlessness. Wilmer Wedel was part of a research project that was similar in circumstance to that of Eddie Flowers (same drug, same sponsor, same decade, shared researchers, different locations).
But compared to Eddie Flowers, Wilmer Wedel’s retrospective assessment of his experience was positive: he was not mistreated, vulnerable or exploited.
These two stories represent a broader set of accounts about people’s experiences in postwar medical experiments that diverge—but diverge in a patterned way. In a recent article in the Social History of Medicine, Nancy D. Campbell and I explain why.
I study medical experimentation (its practice, experience, and organizational structure), and am currently writing a book on the healthy people used as “normal control” subjects at the U.S. National Institutes of Health’s Clinical Center between the time it opened in 1953 and 1980, when the first “Normal” died while on study at the Clinical Center. Wilmer Wedel was one of more than 100 former “volunteers” I interviewed as part of this project. Countway Library for the History of Medicine is now making the full “vernacular archive” of interview transcripts, audio files, pictures, and ephemera I collected available online for anyone to use.
Nancy D. Campbell was a byline to me until 2010, the author of indispensable books on the history and practice of addiction research that I had long admired. One of the main sites Nancy studied was the U.S. Public Health Service’s Addiction Research Center (ARC) in the middle of the twentieth century. We met at a workshop in 2010 and have been writing and talking ever since.
Nancy and I studied parallel sites and similar cases: NIMH medical experiments on psychotropic drugs using human subjects in the mid-twentieth century. More importantly, our work shared the same premise: that there is no true, original experience that can be captured in retrospective accounts. Instead, people’s accounts of medical experiments are products of the moment in which they were created, be it 1955, 1975, or 2011. What interested us about our two cases was how participants’ understanding of themselves and their experiences in LSD experiments during the 1950s either changed or remained the same over time.
Nancy and I compared the institutional logics of the organizations that allowed addicts and Anabaptists to serve in NIMH’s LSD studies in the 1950s, as well as the various accounts the people gave over the decades regarding their experiences (accounts given for many audiences, we are aware). Eddie Flowers was one of hundreds of federal prisoners used in addiction studies at NIMH’s Addiction Research Center housed within the prison in Lexington, KY. Wilmer Wedel was one of hundreds of Anabaptist youths who moved into NIMH’s wards at the Clinical Center in Bethesda, MD to carry out Voluntary Service work as a “normal control,” one of several options the Mennonite church offered for peace workers and conscientious objectors. Nancy and I found that while the self-understandings of the post-addict prisoners shifted and came to be expressed in terms provided by modern American bioethics, the self-understandings of the Christian service workers stayed the same over time, articulated in terms of the institutional logic of their churches. Anabaptists described their experiences as religious work and drew on a shared rhetoric of Christian witness through elective, willing sacrifice for others. They enacted their religious and political self-understandings by cultivating the experience of suffering. We took the divergence between our cases not as a shortcoming of the evidence, but as an empirical puzzle that deserved to be explained.
The category of the “vulnerable population” is itself a product of modern (American) bioethics, which invented the concept in its recent vintage and gave it specific meaning in public parlance. The field of modern bioethics emerged in the 1960s and 1970s, and in the post civil-rights period, the bioethical concept of the “vulnerable population” was coded with contemporary rights-based concerns: about minorities, about prisoners, and more. The specific meanings and people associated with “vulnerable populations” were embedded in 1970s human-subjects regulation, as well as in popular discourse. As a consequence, a new understanding of past experiences came into being for some people (like Eddie Flowers, a post-addict prisoner) but fit awkwardly with the institutional logic that brought other people into experimental settings (like Wilmer Wedel, a Christian service worker). For White religious service workers, the world of their churches and religious lives defined the character of their experience in LSD research, even upon reflection decades later. They stand in contrast to Eddie Flowers, for example, who recognized himself in 1975 and again in 2004 as a modern bioethical “human subject” when he cast back to the 1950s—when he had been a recovering drug addict and a Black federal prisoner.
The concepts of modern bioethics operate at another level, too. Ian Hacking coined the term “moral kinds” to tag what he called meta-ethical issues that people—including scholars—come to embody.[i] We are working to develop Ian Hacking’s framework to show how law (especially U.S. human-subjects regulations) shapes both the memory practices of historical actors and the interpretive practices of present-day scholars. In sum, we are interested in how the concepts of bioethics, such as “vulnerable populations” codified in 1974 and later extended beyond the United States, have narrowed the range of possibilities available to scholars for interpreting empirical evidence. We like Hacking’s approach because it offers a way to investigate how the governing moral sensibilities of a specific time and place both constrain and liberate scholars themselves. The secular, North American, rights-revolution ethos of modern bioethics, we suggest, limits how questions about research practices in the human sciences are conceptualized, and can deflect questions about the historicity of the discipline of bioethics as a knowledge-making enterprise in its own right. We aim to explore medical knowledge-making alongside the ontology of modern bioethics—to ask how, when, where, and with what effects the terms and priorities of this expert domain developed. In doing so, we hope to capture a fuller repertoire of institutions, sensibilities, and activities that eventually came to constitute modern science and biomedicine.
We are in debt to the excellent recent studies that take concepts of modern bioethics as historical products to be studied together with biomedicine.[ii] Our projects have also been inspired by the mind-bending recent work in psychedelics.[iii] At this stage, more than ever, we are eager to shift and refine our own views, and to learn about other scholars working in the same direction.
It is an effort we hope to continue in conversation with readers of Somatosphere who are pressing at the edges of critically engaged moral anthropology; concerned about the limits of formal modern bioethics; interested in ongoing debates about the ontological turn; and querying the nature of evidence of experience. We hope the conversation continues.
[i] Hacking, Ian. “Two Kinds of ‘New Historicism’ for Philosophers.” New Literary History 21, no. 2 (1990): 343. doi:10.2307/469257.
[ii] Cooper, Melinda, and Catherine Waldby. Clinical Labor: Tissue Donors and Research Subjects in the Global Bioeconomy. Durham: Duke University Press Books, 2014. Reubi D (2013) . “Re-moralising medicine: The bioethical thought collective and the regulation of the body in British medical research.” Social Theory and Health vol. 11, (2) 215-235.
[iii] Langlitz, Nicolas. Neuropsychedelia: The Revival of Hallucinogen Research since the Decade of the Brain. Berkeley: University of California Press, 2013. Dyck, Erika. Psychedelic Psychiatry: LSD from Clinic to Campus. Baltimore, Md.: Johns Hopkins University Press, 2008.
Laura Stark is author of Behind Closed Doors: IRBs and the Making of Ethical Research (Chicago 2012) and other work on medicine, morality and the modern state in global context. She is on faculty at Vanderbilt University’s Center for Medicine, Health, and Society.
Pixelization in Crip Time: Disability, Online Sociality, and Self-Making in Russian Apartments by Cassandra Hartblay
Vakas is a Russian man in his 30s with a traumatic brain injury acquired during childhood. He spends most of his days in his room in his family apartment. Occasionally, he convinces his parents to let him go out. Or, he tricks them and slips away when his mother is at work or his father isn’t paying attention. Vakas is a poet and prose writer. In his recent memoir, he recalled one such stolen excursion:
One day I went in a taxi by myself to [the day center for adults with disabilities]. Mama was against it, as always, but remembering what happens if she tries to keep me at home, let me go anyway. I wanted to give my chapbook to L–a – she wasn’t at her desk, but it was still worth it that I went!
I talked with an acquaintance who was working there as a psychologist (and I left two copies of the chapbook there), then I went as far as the intersection with Komsomolskii, and on the way saw so many people. But the real culmination of the walk ended up being asking someone that I met to call the operator for the taxi service. I asked her to call me a taxi from the 777-777 number.
She asked if I didn’t want a different one, 56-06-06, I think it was. She said that she works there and would get me a discount (she said she would do it). She took me across the street and set me up there to wait for the taxi (and told the driver to help me), then she wished me well (In general, I have good luck). This is what I need in life: to talk to someone, to walk through the city, and not just to sit and sit in front of my computer screen.
[Milius 2014, translated by the author]
In this passage Vakas describes what might for someone else be a very mundane outing. In his hands, it becomes a fantastical adventure. His memoir writing, and his descriptions of his excursions out of his family apartment recorded in ethnographic interviews, often have a breathless quality of someone delighted by his own luck. As in this passage, he often describes moments of chance connection with strangers. These interactions give him a sense of satisfaction and unexpected delight.
Vakas’s speech is slow and punctuated at unorthodox intervals by his breath, an effect of his brain injury. It might take Vakas a full 30 seconds to articulate a short sentence. This means that engaging people, especially strangers, in face-to-face communication is a daunting task. Vakas uses eye contact and facial expressions to show his interlocutors that he’s about to speak, and to hold their attention. Out in public, there is always a risk that someone will mistake him for drunk, seeing his shuffling, uneven walk, or hearing his slow speech as a drunken slur. This reality turns each twist of fate, each tiny kindness into a small miracle. In part because of this reality, Vakas finds much of his social life online. But Vakas’s descriptions of chance encounters and the kindness of strangers on the street carry a quality that his descriptions of online interactions approach but never fully achieve.
This post explores how adults with disabilities in Russia are making meaning and building social worlds given circumstances in which it is difficult to leave a family apartment. Sharing excerpts from Vakas’s writing and interviews, I explore the patterns of sociality that he and other interlocutors create, especially through online social networks. I suggest that the particular pattern of social segregation that they inhabit and make livable – physically isolated in a family apartment, but digitally networked – is one that we might think of as pixelization, and consider to have implications beyond the segregation of people with disabilities.
Disability rights and social inclusion movements in the West have, since the 1970s and 1980s, focused on access to public space for people with mobility impairments. Activists argued that social barriers – the attitudes and prejudices that reproduced and normalized the social exclusion of people with disabilities – would also be addressed by removing the physical barriers that keep people with disabilities from moving freely through public space.
Today in Russia, many people with disabilities live in state-funded institutions, usually situated on the outskirts of towns and cities – literally on the margins of society. This model of segregation creates a spatial pattern of social exclusion that is familiar to social and cultural anthropologists thinking about segregation, exclusion, and inequality. While there has not been a major deinstitutionalization movement in Russia to match those in the West, many families have refused to institutionalize family members – especially children with disabilities. This contingent of people with disabilities is segregated according to a different socio-spatial pattern: they are isolated in family apartments. My interlocutors are adults with disabilities who were raised in this way – as children who were neither institutionalized nor integrated into the social world of their nondisabled peers. While many in this cohort attended specialized schools, and some continue to participate in occasional publically-funded or NGO-run programming for people with disabilities, adulthood has come with a new degree of social isolation for many of those with significant mobility or speech impairments. They spend most of their time at home in family apartments.
A recent Human Rights Watch report observed that the barriers in the built environment of Russian public infrastructure create and re-inscribe social exclusion (HRW 2013). For example, apartment buildings – built between the 1950s and 1980s in this region – set the “first” floor up half a flight of stairs from the ground floor entrance, so that even those buildings which do have elevators do not have elevators that reach the ground floor. And, elevators are often too narrow to accommodate a wheelchair.
One afternoon over tea, I was visiting Alina, a woman in her mid-30s who has cerebral palsy, or DTsP in Russian, at her apartment. Alina uses a manual wheelchair, which she can push on her own on very flat surfaces, and uses with assistance over uneven ground. The afternoon in question, I was recording an interview with Alina, and her mother, Valya, chimed in from time to time. Valya recalled a time when Alina was still a child. The work of caring for Alina – who needed assistance to go to the bathroom – made Valya’s commitment to working outside of the home ethically fraught.
Valya: A lot of the parents didn’t work, but I worked. […] So I would lock her in the apartment and walk to work [as a janitor] for three hours. … After a year and a half I was going into the city to [work at] the medical clinic. I would leave keys with the neighbors, and they would feed her, change her, and sometimes they brought her over to their place — that was when we were renting an apartment in a house. But when we moved here [to a bigger apartment building], I would lock her in… they didn’t give me medical leave, even when she was in a cast after an operation… I walked to work, and locked her in…
Cassandra: [to Alina, with empathy] You must have been lonely in a cast and not able to move…
Alina: [to her mother] You didn’t say it right, I wasn’t alone, I always had a lot of people around… there were always people around me.
Valya: I would leave the keys and the neighbors would come, it was simpler then.
Alina: I would play with the kids and no one picked on me. It was only when they grew up a little that they realized that I couldn’t get around… Even now, everyone in the building can’t believe that I go places, that I do things.[i]
Alina, in this exchange, challenges her mother’s recollection that she was often home alone as a child. “I always had lots of people around me,” she counters, and goes on to assert her capabilities and array of experiences outside of the apartment. Alina rejects a description of her life that imagines her as isolated; instead she highlights her world as one of social ties. In doing so, she asserts her own social worth and the diversity of her experiences.
Even now Alina spends many days in her apartment. However, in our conversations, she emphasized that she often has visitors, and has relationships with neighborhood children, neighbors, and with peers with whom she sometimes meets at programs and events that local social work agencies organize for adults with disabilities. She expressed opinions about world events, politics, and pop culture both during in-person interviews and in online correspondence, usually using the chat function on a popular social network.
In an in-person interview, Vakas told me a story that also illustrated the timbre of life in a family apartment. The text here was transcribed by hand, and the line breaks indicate Vakas’s unusual patterns of breath and pauses in the midst of his slow speech. Originally in Russian, I have translated the text, but retained line breaks to remind the reader of Vakas’s manner of speaking.
the 14th was the concert
that was a really unusual, since i went out
yeah. but this – outing – makes me
but today i asked — it was beautiful –
let’s go outside – he [papa] didn’t want to
that’s what i live for – seeing people
getting to know someone brings me joy
it’s hard – since i almost
don’t go outside at all and my parents
keep me at home, keep an eye over the place and i don’t like it and
i tell them so
but there’s already been so much uproar
about this […]
my parents explain it like this:
so they let me out
on the street – when i started going
to the weekend activity club, it was
not in very good shape – three
or four years ago.
i met a new volunteer
this one was Olga (i forgot her last name)
it was nice talking to her
and i asked her to
take me outside in the yard
and there… the asphalt
and it got windy
-what happened, you fell down?
-So there was pavement with a
curb at the edge the
and I for some reason thought
i’ll step down
and because of the ledge
fell right over
and my face – i swallowed a tooth
on the pavement
after that, i started to stay at home
and i told them so many times
but they –
[imitating a nagging parent] you fall – your teeth! your head!
and we’ll be sitting
by your hospital bed again
like after the accident
you can only go places in cars,
if you’ve called ahead
so that’s what the 14th was –
i’m only allowed out for things like that
While he cherishes the moments when he does get to meet people face to face, on most days, Vakas finds social meaning through online communication on the Russian social network V Kontakte, which is similar to Facebook, and through the occasional excursions when he manages to convince his parents to let him go out alone or he steals away to visit acquaintances in the city.
‘Crip Time’ and Digital Sociality
It was Vakas who first led me to consider the digital as an object of study rather than a mode of communication while I was in the field. Because he speaks slowly, and with a degree of difficulty, he sometimes prefers to share information online. When I hadn’t known him for very long, one afternoon I asked him a question in a group environment, and he suggested that he would send me an explanation online, rather than try to give an answer verbally.
The digital option – messaging on VKontakte – offered a shortcut in what disability studies scholars call “crip time,” the elongated temporal frame in the performance of disability (Kuppers 2014; Hickman 2014). Crip time is an element of disability theory that is important for understanding the experience of technology in relation to disability or non-normative embodiments. Walking, talking, moving from one space to another, getting together with friends, or negotiating (in)accessible networks: all take on a particular temporality when one occupies a non-normative embodiment. To illustrate this contrast with cultural norms, as a quick way to winkingly let one another know what is at play, the anglophone disability studies community has come to call this non-normative temporality “crip time.” The ways that crip time takes on specific contours across cultural contexts, and in digital worlds, offers rich territory for current scholarship.
Interviewing Vakas was an experience of entering crip time. The text of my interviews with him are transcribed in a manner related to Vakas’s performance of these words and my transcription of them. Because he speaks so slowly, Vakas asked that I not record his interviews on tape; over the years, he has been made to feel ashamed of his voice, and he didn’t want his perspective captured in this way. So, instead, as he talked, I would jot down his words in a notebook (in Russian, which I later typed and translated to English). Because I was writing longhand, and fairly quickly, his words would shortly fill a line on my notebook page. I used the natural breaks in his speech as a way to break up lines. This had a useful effect of also capturing something of the performance of his speech: his breath comes at irregular intervals that don’t necessarily correspond with punctuation in a sentence. Where most people will breathe at a comma or between phrases or sentences, Vakas often pauses to breathe or swallow mid-sentence. Listening to his narration of his own life has the effect of requiring the listener to enter into a co-performance of crip time. The transcription of his interviews reflects this.
For instance, both the constancy of crip time, and the importance of digital sociality, are evident in the following exchange, which followed my request to Vakas that he narrate a typical day, starting from when he gets up each morning. He responded:
Vakas: i don’t set an alarm, it’s easy
because i really – it’s
no problem for me – to get up early
i just say to myself – get up
C: when do you usually get up?
V: when my brother is getting ready for school
C: you hear him and get up?
i get up, i go out to the kitchen
i have some tea – i can’t
eat cereal – my stomach
just needs to drink tea. around
seven mama gets ready
and when she leaves, i
take myself back
to my room – and turn on the computer –
[the social network] VK – and the day begins
For Vakas, the moments in his day when he feels as if he is his true self, happen when his family leaves and he can go online, uninterrupted. Online, he is someone engaged in a social world through voluntary communication; he is part of a network of human connection. Online, he shares his writing, he makes new friends, he participates in public contests and events. Offline, in his family apartment, he feels forced to interact with family members, and because he isn’t allowed outside without someone to help him walk without falling, without his computer, he has no means of escape, and little chance to encounter surprises or build new relationships.
Because digital platforms allow us to talk through walls, or communicate across space in ways that previous media did not, they have led to new configurations (boyd 2014). Digital communication, especially online social networks, played an important role in the narratives of selfhood for my interlocutors. In this way, digital platforms allowed them to access public spaces in ways that they were not able to do in the physical world.
For instance, in describing his typical day, Vakas continued:
V: [every day, I’m on [the social network] VK
or some other website]
or i ride my bike [gestures to stationary bike in bedroom]
i might get on it at any time
after 20 minutes – i strength drains more quickly and it’s harder for me
[he means than for others, but doesn’t say] i use up more energy on motion
two times as much – a bunch of times
i fell because i was
at it for too long
i get tired and rest for
like 10 minutes or so i don’t do anything
C: do you lie down?
V: yeah, and eyes closed – really
it’s to get a break from the computer —
i forget about time and sometimes
i forget about food – and
only at night – when my stomach starts to rumble – then i go to the kitchen
This mode of communication is not unique, of course, to those with mobility impairments. Many young people, especially those who are unemployed, spend hours of time each day online; they play games, talk to friends, or watch videos. What perhaps distinguishes Vakas’s crip digital social experience from gamer or computer junkie culture is that he does enjoy going out and meeting people in the real world, but practically, he rarely has the chance to do so – his desire to go out alone always causes fights with his parents, who want him to stay inside unless he is accompanied. Sometimes he goes out alone anyway, and, he tells me, he braces himself for the results when he gets home!
But because digitally formed words are both persistent – in that they stay the same and are able to be read long after they are created – and mobile – in that they can be copied and cut and pasted between frameworks – he can easily use the same poetry text or description of himself over and over again. Because the tempos of conversation and communication in digital media occur at a different pace from spoken conversation and don’t require voiced speech, online he can participate in social life in a way that his speech impairment impedes in face to face communication.
As a comparison of Vakas’s self-narration in his memoir versus his description of online interactions demonstrates, digital sociality and social engagement in the physical world are not equivalent, but both are important, because, in his words, communicating with people “gives him positive emotions.” In interviews and participant observation with adults with disabilities in Petrozavodsk, I observed that narratives of daily activities in virtual worlds came to stand in for other forms of sociality more frequently experienced by non-disabled people in their narratives of daily activities. There is a manner in which narratives of virtual sociality might be understood as crip technologies of self, performances of autonomy, competence, and mobility.
Pixelization and relational difference
I suggest that we might think about Vakas’s experience of digital sociality by extending metaphorically the idea of pixelization. That is, my interlocutors are socially segregated via a specific socio-spatial pattern. Unlike marginalization, in which a subculture is pushed to the edges of society, as for example, in former (and current) configurations in which people with disabilities were imprisoned in institutions at the edges of cities, pixelization doesn’t isolate people at the edges. Like pixels on a screen, people are isolated in the physical “cells” of their apartments, yet at the same time embedded and enlivened in networks that produce meaning-making interactions. The metaphor of pixels is especially apt given that my interlocutors are isolated in physical space at the same time that they seek out connection via digital networks. The digital world is a place where people are “typing themselves into being” (Sunden 2003, cited in boyd 2014:37); where people can leave behind their “‘material’ — or physical embodied — identities, enabling them to become a better version of themselves” (boyd 37).
Digital platforms became a way for cultural actors to extend the space and time of their real-world social interactions. Face-to-face interactions continue beyond in-person conversations, into time when actors are alone, at home, or otherwise physically removed (boyd 3). Like the telephone and television before them, mobile devices and digital networks shift the space-time relations of bodies engaged in social relations. This mode of extending social space and time by engaging in digital sociality in moments of material isolation holds true for my interlocutors, who also seek interaction and feelings of togetherness.
The configuration of crip embodiment and digitally enabled social selves that my interlocutors describe is a unique configuration of technology, architectural infrastructure, and cultural and personal expectations of self-making. The social world-making that my interlocutors, including Vakas and Alina, engage in can be thought of as both a process and a state of pixelization. That is although their bodies are physically isolated, their social selves extend in digital time and space. Social worlds, selves, and meaning are enacted, negotiated, and sustained. Their online interactions are (social) performances of interest and taste and involve making distinctions about who they are, who they are not, and what they desire.
But pixelization is also limited by access to technology and by physical mobility. For example, mobile technology creates a situation in which you might send a message inviting someone to an event after you encounter them by chance at the bus stop. This was certainly the case in Petrozavodsk in 2012-2013 (at the time of my fieldwork). Digital and material sociality are intertextual experiences, that are difficult to disentangle from one another.
Even so, face-to-face and online interactions have particular lexicons and conversations take on distinctive temporal characteristics. For example, Alina described her sense that talking online is always second best. She prefers to have visitors rather than just talk online; in her perception, communication is a way to set up in-person meetings. For her, digital interactions do not replace a conversation over tea – an experience that does require the movement of bodies through space, a shared emplacement. For Vakas, on the other hand, conversation online can be preferable, because, he explains, by copying and pasting text he has previously composed, he can communicate more ideas much more quickly than in a verbal exchange.
In this way, pixelization doesn’t resolve problems, but it creates patterns. That is, owning an internet-enabled computer hasn’t ended the problems of discrimination and social segregation for people with disabilities in Russia. It is still difficult to get a job, to move freely through public space, to overcome social attitudes and build friendships with strangers, even as online networks make accessing entertainment, typing messages to friends and acquaintances, and engaging with popular culture easier. My interlocutors come to know themselves as social beings through mediated communication in digital space.
Ginsburg and Rapp write that “disability is a profoundly relational category, always already created as a distinction from cultural ideas of normality” (2013:42). As cultural ideas of networked communication change, so too does the pattern of being socially engaged from within a spatially isolated zone: the concept of the margins is no longer sufficient to describe social exclusion. New metaphors (or metonyms) – such as pixelization – can offer conceptual innovation. If we pay attention to what anthropologists of disability call “sensory socialities” (Friedner and Helmreich 2012, cited in Ginsburg and Rapp 2013:48), we might note that pixelization creates a particular sensory experience of the social world. Seated before computers or other devices in tightly packed apartments, people may not be far from one another’s bodies in terms of strict physical proximity. Yet, visual and auditory insulating properties of walls can cultivate a sense of isolation and being alone. Through a variety of strategies, my interlocutors sought to create social experiences both on and offline in this social-material configuration. What can pixelization tell us about broader social patterns?
In the lifeworlds of Vakas and other disabled interlocutors in Petrozavodsk, there is tension between being confined and being connected. Patterns of spatial engagement and isolation interface with modes of digital sociality. While barriers in architecture and social attitudes make moving into public spaces daunting, digital modes of sociality take on charged meanings. Even so, as mobile web technology has moved digitally networked communication into public space, Vakas continues to engage in the digital on a desktop computer in his apartment. Where communication across time and space is often thought to depend purely on technology, Vakas reminds us that crip time and crip embodiments, and the mobility and verbal style of particular human bodies, are always implicated in patterns of communication and sociality. Communication and social life happens with and through human bodies, and, in turn, makes worlds inhabitable.
[i] Interviews excerpted here were conducted by the ethnographer in Russian. Interviews with Alina and Sergei were recorded digitally and transcribed by a research assistant. Interviews with Vakas were not recorded but simultaneously transcribed by hand by the ethnographer. All translations from Russian to English are the ethnographer’s own.
Works Cited & Further Reading
boyd, danah. 2014. It’s Complicated: The Social Lives of Networked Teens. New Haven: Yale University Press.
Ginsburg, Faye. 2012. “Disability in the Digital Age.” In Digital Anthropology, edited by Heather A. Horst and Daniel Miller. New York: Berg.
Ginsburg, Faye, and Rayna Rapp. 2013. “Disability Worlds.” Annual Review of Anthropology 42(1): 53–68.
Hartblay, Cassandra. 2015. Inaccessibility Accessibility: An Ethnographic Account of Disability and Globalization in Contemporary Russia. Dissertation. UNC Chapel Hill.
Hickman, Louise. 2014. Crip Time. A Video Performance. Presented at Society for Disability Studies. Minneapolis, June 2014.
Horst, Heather A., and Daniel Miller, eds. 2012. Digital Anthropology. New York: Berg.
Human Rights Watch (Organization). 2013. Barriers Everywhere: Lack of Accessibility for People with Disabilities in Russia. http://www.hrw.org/reports/2013/09/11/barriers-everywhere-0.
Kuppers, Petra. 2014. Crip Time. Tikkun Magazine. http://www.tikkun.org/nextgen/crip-time.
Milius, Vakas. 2014. Moi Mir Vzdokhnovleniia [My World of Inspiration]. Lipetsk: Grabis Press. In Russian.
Sundén, J. 2003. Material Virtualities. New York: Peter Lang.
Cassandra Hartblay is a 2015 Summer Research Fellow at the Kennan Institute of the Woodrow Wilson International Center for Scholars in Washington D.C. She received her PhD in Anthropology from the University of North Carolina at Chapel Hill in 2015. She was the 2013 recipient of the Irving K. Zola Award for Emerging Scholars in Disability Studies for her paper titled A Genealogy of (post-)Soviet Dependency: Disabling Productivity. She is currently developing a theater script for an ethnographic play based on the research related to this post.
Inhabitable Worlds is a series that examines the theoretical tools and approaches that scholars bring to the study of disability in the social sciences and humanities. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).
University of California Press, 2012, 332 pages.
Heather Paxson’s The Life of Cheese might seem like an odd book to review for Somatosphere, but a quick glance reveals chapters such as “Microbiopolitics” and “Ecologies of Production” which feel as familiar as well-worn flannel. The Life of Cheese examines the values and meanings produced in tandem with artisanal cheese: a process where cheesemakers involve themselves with landscapes, ruminants (goats, sheep, and cattle), bacteria, fungi, thermometers, and farmers markets. The Life of Cheese is a book about artisanal assemblages in America. Examining American agriculture—artisanal and conventional—through assemblages is a worthwhile endeavor and one that has potential for many future research projects. I hope that I will be one of them.
The first chapter “American Artisanal” introduces two important concepts underpinning Paxson’s analysis: the “unfinished commodity” and the “post-pastoral ethos.” An “unfinished commodity” is a saleable object that contains multiple values (economic, moral, personal, etc.) and an unveiled history of production. For example, the story of Jasper Hill Farm’s Bayley Hazen Blue is an integral part of the commodity and not a fetter hidden beneath an avalanche of advertising. When cheese is sold at market, photos of the farm, family, and animals might be placed alongside it to tell its tale. The commodity’s biography is consciously exposed and elucidated by its makers. This is a far cry from most food purchased at the grocery store where advertising and packaging aim to obscure the commodity’s life history. I have reservations about the “unfinished commodity” being distinct and separate from other commodities. I believe that capitalism’s ability to transform a commodity’s hidden history into mere marketing trumps the best intentions of artisanal entrepreneurs. However, Paxson is correct in her description of how food is marketed by new agrarians. The “post-pastoral” refers to a non-binary understanding of nature and culture. For post-pastoralists, nature is not replaced or civilized by culture, but rather they work together, they are co-workers. Cheesemaking becomes a multi-species team sport where everyone is working and playing together instead of the imposition of human order upon nature’s disorder. This is different from a traditional pastoral understanding of the world where nature and culture are separated and human activity takes place in towns and cities away from the land. For Paxson, the “unfinished commodity” and the “post-pastoral” are key concepts in understanding the material, semiotic, and multi-species assemblages embedded within the “American Artisanal.”
Chapter two, “Ecologies of Production,” examines the material and moral ecologies that produce a cheese’s flavor, texture, taste, and smell. Artisanal cheese is made by human hands, but “ruminant animals, herding and guarding dogs, and bacteria, yeasts and molds also contribute” (31). Artisanal dairying and its products are rendered moral by recognizing non-humans as laborers and their labor as a social good. Small-scale cheese entrepreneurship is understood as good and natural because “the entire assemblage of photosynthesis, rumination, lactation, and fermentation is imagined, orchestrated, funded, regulated and appreciated by humans operating within broader political economies” where labor and business is recognized as virtuous (41). Artisanship is seen as a moral and personal response to the immoral, impersonal industrial capitalism of large-scale production. Within an artisanal ecology, ruminants are not milk machines but co-workers with distinct personalities that reveal the concerns and interests of individual farmers. According to a farmer interviewed by Paxson, goats are troublesome and have distinct demeanors that attract animal lovers. Sheep are thought to be stupid, without individual personality; they are a flock, and are preferred by farmers interested in pasture maintenance. And cattle seem to attract folks who are interested in working with heavy machinery. While working on a dairy, I was told jokingly that Jerseys, a small cow with milk high in butterfat, were for farmers who were too proud to milk goats, the implication being that “real” dairy farmers milk large cows that produce a lot of milk: Holsteins.
The Life of Cheese is not a multi-species ethnography, but a further exploration of animal and farmer relations would have been greatly appreciated. If I ruminate on my eleven months working on a dairy and the life of particular ricotta cheeses and yogurts, it requires taking into consideration my daily involvement with a herd of sixty or so cows: some who I adored, some who I detested, and some who were just there. The herd was composed of various breeds (Holsteins, Jerseys, Line Backs, Brown Swiss, and mixed) and individual cows had particular physical features or ailments that made milking easy or difficult. Within various cheeses and yogurts was the milk of all these cows as well as all the work that made that milk possible. This work is ethically and emotionally messy. It is not just stringing up electric fence and making hay; cows are culled or put down with some regularity. (To put it flippantly, at other workplaces “co-workers” are not shot in the head and thrown in the back of a pick-up truck when they fall and break a leg.) Further research into the multi-species assemblages that make animal-based artisanal foods possible should consider their messiness. It is a sad day when a farmer kills a cow he has been milking for a better part of a decade. Everyone gets a little teary eyed.
Chapter three, “Economies of Sentiment,” explores artisanal cheesemaking as living the good life, the good life being a life lived on the land under one’s own direction and a life working with one’s hands and animals. For baby boomers, this is a life motivated by the counter-cultures of the sixties and seventies. For younger farmers, it is a response to more recent events: the dot-com crash, 9/11, and the financial crisis of 2008. To this list of influences, I would add right-wing libertarianism. Based on my experience dairying in New England, I can say the political and cultural influences on new agrarians are mixed and not always politically progressive. For example, young farmers may listen to Phish but that does not stop them from supporting Ron Paul. For artisan farmers the good life is marked by the demands of running a business. A central concern for cheesemakers is how to make a living without losing touch with the lifestyle that originally drew them to artisanal production. This is not a question of purity. In food politics, purity is largely the concern of consumers who understand agriculture in the abstract. Producers understand and experience agriculture as a compromise shaped by the day-to-day realities of running a business that is subject to moral scrutiny. How does one price cheese? Should it be available to all or does the scale of production necessitate that it remains a luxury item for wealthier consumers? Should one buy certified organic hay from another state or non-organic hay from a neighbor? Should one scale up and become management or remain small and always have one’s hands in the muck? These questions and their answers are a reflection of American agriculture and capitalism in the present moment.
Chapter four, “Traditions of Invention,” introduces us to the history of cheesemaking in the United States. Initially women made cheese as part of their household and farm chores. It was only in the mid and late nineteenth century that it entered the factory and became a blue-collar masculine profession. Despite the professionalization and technoscientific standardization of cheese making during the nineteenth and twentieth centuries, a handful of traditional cheese factories have continuously used artisanal methods. However, the cultural capital of newer artisans and the ubiquity of processed “American Cheese” have rendered invisible traditional cheese factories, such as the Chalet Cheese Co-Op that was founded in 1885 and is currently the only facility in the United States producing Limburger cheese. Paxson points out that American artisans do not invent tradition so much as they have a tradition of invention. Artisan cheesemakers turn Hobsbawm upside down. In France, for example, Camembert represents the peasant culture of the Ancien Régime, despite being an artifact of pasteurization and large-scale technoscientific production. In the United States, artisanal cheese is not calling upon the past but summoning a post-pastoral entrepreneurial future into the present.
Chapter five, “The Art and Science of Craft,” examines cheesemaking as a synthesis of art and science. Concocting artisanal cheese is intuitive and creative, like art. Yet it relies on empirical observation, measurement, and record keeping, like science. This allows artisanal craft to stand in contrast to industrial production, which minimizes intuition and creativity without rejecting science; a post-pastoral art sees science as a tool working with nature and nurturing production. According to Paxson, craft is “synesthetic reason”: understanding via touch, taste, smell, sight, and their various combinations (131). To grasp cheesemaking, one literally grasps curds. Negotiating risk is impossible without “synesthetic reason” and risk is central to artisanal cheese production where there is little certainty. Mass produced cheese is the offspring of certainty. Standardized, homogenized, and pasteurized milk ensures a uniform cheese. Artisanal dairying, on the other hand, involves variation and risk due to “seasonality, ambient temperature and humidity, herd health and inconsistent human practice” (134). For example, the taste of milk changes with the herd’s diet and diets change with the seasons. Negotiation of this variation involves touch, taste, smell, and sight, as well as measuring the ph and temperature of milk. Artisanal cheesemaking in the present is a post-pastoral mélange of the present and the past where technoscience mingles with tradition.
Chapter six, “Microbiopolitics,” explores the differences between the way pasteurian and post-pasteurian microbiopolitics manage risk. Microbiopolitics refers to “governmental and grassroots efforts to recognize and manage human encounters with the organic agencies of bacteria, yeasts, fungi and viruses” (160). Pasteurian microbiopolitics as practiced by the Food and Drug Administration (FDA) sees raw milk as a dangerous biohazard, while post-pasteurian microbiopolitics as practiced by producers and consumers of raw milk and raw milk cheeses see it as a natural, traditional, healthy, probiotic food. Pasteurian microbiopolitics perceives the microbial world–and nature more generally–as an unruly, dangerous, and chaotic place. For the FDA, milk is only safe after it has been pasteurized and tamed by technoscience. Post-pasteurian microbiopolitics sees human culture as part of a multispecies assemblage in which human-microbe and human-animal relationships are in constant negotiation. Post-pasteurian artisans do not see raw milk as inherently dangerous but potentially harmful due to human error, which Hazard Analysis and Critical Control Points (HACCP) and best practices can mitigate.
Microbiopolitics seems like a relevant and useful concept for medical anthropologists. On the farm and dairy I worked on, a number of employees–including myself–have gotten very sick; campylobacter and cryptosporidium seem to have been the main culprits. Both are very common on farms. Folks new to the farm often caught a “stomach bug” almost immediately. There is a research project out there for someone interested in cross-species disease and multi-species ethnography on small farms, particularly as WWOOFing (World Wide Opportunities on Organic Farms) and farm apprenticeships are growing in popularity. I would have appreciated a discussion on post-pasteurian microbiopolitics and farm worker health. On the farm, we thought our immune systems were top notch. I had a human co-worker who ate numerous lunches with his hands covered in manure. I drank coffee and ate breakfast in the milking parlor as shit was splattering here, there, and everywhere.
Chapter seven, “Place, Taste and the Promise of Terroir,” discusses the French concept of terroir and its application by artisanal cheese makers in the United States. Goȗt du terroir, flavor of the terrain, is used to describe how people, tradition, and landscape co-create the taste of a place. In the United States, terroir is given an entrepreneurial and individualist twist to designate the taste of a particular farm and its products, rather than the taste of a cultural and geographical region. Terroir has become “thoughtful action” and a moral argument “rooted in the Lockean virtue of improving society through improving the land” (190). Terroir has become a critique of the industrial food system experienced as taste. American farmers are re-engineering terroir to create a sense of place through taste, to reterritorialize a food system that has been deterritorialized by global capitalism. Artisans use terroir to “demonstrate how people create place as they go about the quotidian tasks of agrarian livelihoods that physically shape landscapes and situate people’s senses of place” (211). Terroir is used to render a place affective; taste becomes a way to stir the soul. For American artisans, terroir is not about holding on to regional identities, traditions, and tastes but about disclosing another way of living: a moral, multi-species, and business savvy being-in-the-world.
“Bellwether” is the final chapter in Paxson’s The Life of Cheese. A bellwether is a castrated ram wearing bells that leads a flock of ewes to greener pastures. Are artisanal cheesemakers agriculture’s bellwether? Or to put the question more broadly, are small scale new agrarians leading agriculture to greener pastures that have not been denuded by industrial production? By reaching behind and retrieving the past, can we save the future? Is the future of agriculture a mélange of tradition and technoscience? This is an important question as California is facing a terrible drought and we may be facing existential threats owing to climate change. However, this is where I out myself as a Marxist and suggest that agriculture’s future will more likely be the Trans-Pacific Partnership than farmers markets.
I enjoyed Paxson’s The Life of Cheese and most of my comments can be subsumed under the slogan: expand the assemblages. Future research into artisanal food production and agriculture more generally should start with multi-species assemblages and then radiate outwards, encompassing more and more human and non-human components within the multiplicity. For example, understanding artisanal cheese concoction as the re-inscribing of place and a form of rural development could be further elucidated by exploring the connections between farmers and various government agencies such as the United States Department of Agriculture’s Farm Services Agency, which provides loans and disaster assistance. The role of money and debt in capitalist societies is of particular interest to social scientists, and I imagine that for many new agrarians FSA and/or private loans may be an important part of their ecologies of production. This is just one example of how expanding the scope of assemblages outlined in The Life of Cheese could prove fruitful for future researchers. I whole-heartedly recommend The Life of Cheese for folks interested in the growth of small-scale agriculture in the late 20th and early 20th centuries, artisanal food production, and foodie culture. The Life of Cheese would not be out of place in anthropology of food or agriculture courses.
James Babbitt is beginning graduate work at Washington University in St. Louis in Sociocultural Anthropology. His research interests are animal agribusiness, science and technology studies, and critical theory. He is also pretty good at milking cows.
Cases set boundaries; cases draw you in. Often imagined as they appear in traditional museums – archipelagos of order in ordered spaces with carefully placed markers for larger narratives – cases partition, sequence, and present artifacts and information for visitor attentions. As anthropologists interested in museums and other exhibitionary spaces, we consider the parameters around what is encased and what is not encased. Where does the visitor experience of the museum actually begin, and how do you know?
Much of our work in recent years focuses on the establishment and expansion of public exhibition venues for Native American self-representations of histories and sovereignties, following the advent of Indian gaming. [i] Our research often oscillates between the realms of public stories presented in museums and at historical landmarks, and the kinds of public stories and thematics employed in casinos and spaces such as gardens, village greens, and hotel lobbies. For this project we visited casino and non-casino Native sites in Connecticut, Minnesota, and Southern California, and studied casino design in Macau and Las Vegas.
We seek to provoke certain kinds of reading spaces or experiences for the reader. One of the ways we see our writing working in this case is by evoking the kind of dense, overlaying, immersive experience that casinos offer. The images we provide are designed to be evocative; the way the text and the photos work together is part of our analysis.
Our case in point here is the Mohegan Sun, in Uncasville, Connecticut. We choose this as our case of focus because it willfully blurs distinctions between casinos and more traditional exhibit spaces. Like all casinos, the design of the Mohegan Sun encloses its patrons within the casino space. The absence of windows, clocks, and a clear exit erases the outside and encourages people to stay in the building, to amble within a set of predetermined choices for attention or directed distraction.
The automated jingles of the slot machines, punctuated by the simulated sounds of coins spilling into their waiting troughs, promises potential gains. The noise distracts patrons and keeps them focused on the opportunities available within the casino confines, absorbed by the casino’s narrative. Visitors animate the interior, moving through the space, pushing buttons and turning cards— eating, walking, observing
Like most casinos, the Mohegan Sun serves up a thematic interpretation of a particular kind of nowhere, a site for generalized and accessible longing. Unlike most casinos, the Mohegan Sun draws on and accentuates a sense of place specifically connected to local imagined identities, what one might call a sense of “Moheganness.” The Mohegan Sun turns some of the thinking about casino interior design on its head by making design elements focal points for distracted attention, rather than rendering them unobtrusive, as in traditional casino design (cf Schull).[ii] Tribal historians worked with a casino design firm to embed a large number of Mohegan signs and symbols in the casino’s interior to create a space for “ambient learning.”[iii] This selective strategy renders other elements of Mohegan identities—like colonial and post-colonial histories of displacement and marginalization—invisible.[iv]
The Mohegan Sun presents an immersive experience that absorbs visitors into saturated interiors crammed with a dense set of Mohegan signs. These signs often intersect with those indicating an imagined “natural”: howling wolves, local plants and crops, stone formations, and starry skies. Some of this participates in recent casino design trends that extend fantastic narratives outside the confirming cases of their interior spaces. In Las Vegas, for example, the skyline and roller coaster of New York New York, and the hourly pirate battles at Treasure Island expand beyond the conventional limits of casino space. However, the imagined referents of many Las Vegas attractions lie far, far away from their footprints in that city. The Mohegan Sun’s outward-extending narratives are imagined both large and general, and profoundly local and intimate. The interior design at once effaces and hyper-refers to the outside. The inside folds outside to indicate its own surround, replete with local histories and desires. The interior design at once effaces and hyper-refers to the outside.
Patrons circulate through three interlocking gaming spaces, the Casinos of the Earth, Sky, and Wind. Each of the casinos functions as a contained narrative space. Within the Casino of the Earth, visitors move through the four seasons, signaled by the designs of the carpet—blooming flowers or autumnal leaves, for example—and skins printed with traditional seasonal activities, such as planting and hunting. The Mohegan creation story provides the central motif of the Casino of the Sky; the Casino of the Wind offers representations of the winds from the four directions. Some of these design elements immediately stand out. The printed skins suspended from the ceiling and the representations of the thirteen Mohegan moons embedded in the flooring need little explanation.
Other designs require more specialized knowledge: traditional basketry designs replicated by the light fixtures, the repetitions of certain color combinations and motifs that reproduce particular Mohegan symbols. To enable its visitors to engage with these less visible markers of Mohegan history and identity, the Mohegan Sun provides The Secret Guide “intended to facilitate and enrich” visitor experience “by explaining the hidden meaning of all that surrounds you at Mohegan Sun.” The guide links design choices to specific aspects of Mohegan cosmology, history, and traditional artistry. Once available for the asking at any of the information desks scattered throughout the casino and hotel complex, the guide must now be purchased in the casino gift shop.
Each of the sign sets—the different motifs, the different objects, the different embedded narratives in the casino—whisper (or not) secret (or not) stories about imagined Mohegan spaces and places, groundings and elements. In a space made thick by noise and scent, sight, and the dense tactility of everywhere, jostling for over-layering attention, secret or silent stories weave through everything on display.
The Hall of the Lost Tribes, located in the Casino of the Earth, exemplifies the constant play between visible and invisible, real and imagined, Mohegan and not. The Hall pays homage to thirteen tribes that once occupied territories adjacent to the Mohegans with many of the tribal identifying symbols either taken from historical documents or created by the casino design firm. The Hall is fully enclosed, included in, but still separated from the Mohegan narrative.
The immersive and multiply distracting interiors recall Walter Benjamin’s distraction theory, in particular its relationship to architecture. In contrast to the “contemplative immersion” demanded by traditional aesthetics, Benjamin posits that architecture offers “the prototype of an artwork that is received in a state of distraction and through the collective” (1968: 239).[v] While the concentration of the connoisseur allows for the artwork to absorb her, the distraction of “the masses” allows for their absorption of the artwork into themselves, a productive surrender to vernacular immersion.
The Mohegan Sun presents a grand distractive theater for such absorption. If the site blurs the distinctions between museum and casino it succeeds, in part, by oscillating between offering sites for contemplation and sites for traversing distraction—the kind of distraction achieved by walking through a space crammed full of Mohegan signs intermixed with the deep distractive strategies of a contemporary casino. The buzzing, ringing, flashing overloads approach a fully tactile atmosphere through which the patron swims, both enchanted and in a perpetual state of being decentered.
Building from Benjamin, Michael Taussig recognizes the “dialectical image” inherent in the mimetic faculty, “historicizing nature and naturalizing history.” Mimesis is “the nature that culture uses to create second nature…drawing on the character and power of the original” (1993: 251). While the interior case contains a complicated mix of explained and unexplained Mohegan referents and designs, the case’s exterior gestures outward, including and embracing the site as part of its sign. The mirrored, reflective glass exterior of much of the complex serves as a skin that replicates its surroundings, referring to a close elsewhere, covering itself with a mimetic landscape.
We present the Mohegan Sun as a case that troubles distinctions between representational and immersive environments. Writing a case study such as this encourages us to rethink the boundaries between public casino spaces and more traditional exhibition spaces, to recognize them as a continuum. This kind of writing permits a kind of “sense engagement” with the text, at once immersive and representational, drawing you into a story intended to feel expansive, but which remains carefully bounded. The surrounds of Uncasville and local histories bump against each other, the expectations of non-Native visitors looking for Native markers against a backdrop of the imagined Native mundane, and local uses of Mohegan stories and place- and way-finding practices. While the building holds the mimetic experiences of its interior—the dry-stone walls and trees and bark panels, for example, or its never-changing seasons—it acts as reflective container and embodied story at once.
Dr. John Bodinger de Uriarte is an associate professor of anthropology and serves as the Chair of the Sociology & Anthropology Department at Susquehanna University. He also directs the Museum Studies and Diversity Studies Programs. His research interests include questions of identity, representation, and Native American sovereignty, and how such issues are engaged in contemporary museum, casino, and photographic practice. He is the author of Casino and Museum: Mashantucket Pequot Representation. E-mail: firstname.lastname@example.org
Dr. Melissa Biggs is a social anthropologist specializing in issues of representation and cultural heritage. Her current research interests include Native self-representation, indigenous food sovereignty, and intellectual property rights and trademark as they apply to indigenous food products. She serves as Program Coordinator for the Humanities Institute at the University of Texas at Austin, and has taught at Colorado College, the Culinary Institute of America in San Antonio, Southwestern University, and Texas State University. E-mail: email@example.com
[i] Bodinger de Uriarte, J. and Biggs, M. (2013). Wag(er)ing Histories, Staking Territories: Exhibiting Sovereignty in Native America. Museum and Society, 11 (2), 122-57.
[ii] Natasha Schüll’s ethnographic study, Addiction by Design, considers more traditional forms of casino design and their links to addictive behavior, specifically machine-based gambling.
[iii] The primary design firm for The Mohegan Sun is Rockwell Group, based in New York City. From the beginning, the Group worked with tribal historians to identify Mohegan objects and themes to incorporate into the interior design. The firm is particularly known for its dense, thematic interior designs. Please see: http://www.rockwellgroup.com/ for examples. Their client base includes a number of casinos and other venues in Las Vegas.
ii Nearby tribally reclaimed sites, such as Shantok, recognized by the Mohegan as their first settlement, and the Royal Mohegan Burial Ground in the neighboring town of Norwich, acknowledge these more complicated histories.
[v] Benjamin, Walter. 1968. “The Work of Art in the Age of Mechanical Reproduction,” in Illuminations, Hannah Arendt, ed., pp. 217–251. New York : Shocken Books.
All images are by the authors, with the exception of Image 4 and Image 13, which were made available through the freely distributed press materials of the Mohegan Sun.
Starting off the second half of June’s journal roundup, we have some special issues. Two have been highlighted on Somatosphere: BioSocieties, “Alimentary Uncertainties: From Contested Evidence to Policy“; and Culture, Medicine and Psychiatry, “Conceptualizing Autism Around the Globe“. A third, from Medical Humanities on critical medical humanities, also will be posted in the coming days.
Anthropology and Aging Quarterly (Open Access)
This paper explores the traumatic memories of ageing Shoah survivors who attend a Jewish social and therapeutic support facility in London (UK). The study investigates the perceived differences in trauma within a diverse group of members who partake in the day centre. The difference in Shoah experience contextualises how survivors of ghettos and concentration camps possess a salient relationship with food, notably bread which acts as an enduring symbol of catastrophe for participants. The meanings that underlie death amongst camp survivors are evaluated, where decisions regarding the end of life stage can be interpreted as a shared experience with those who perished during the Shoah. Results exemplify how religious and cultural elements of Judaism mediate the trauma that has become thoroughly embodied for participants. survival is steeped in intersubjective acts of remembrance, offering a novel contribution to the anthropological study of genocide.
This ethnography reflects on a non-profit hospice care organization in the Midwestern US where caregivers “slow down” medical care by acknowledging the plurality of forces that constitute the illness experience, philosophically departing from their biomedical, non-hospice counterparts. It demonstrates the ontological effect of “slowing down” and attending to a set of patient problems that extends beyond the biological, or any distinct, domain. The result is a medical world that privileges the embodied, lived expression of disease—rather than the statistical, clinical expression—resulting in medical care that is enmeshed in the variables of everyday life. I therefore situate hospice care in a historical moment witnessing the emergence of a sophisticated and “non-modern” (Latour 1991) form of medical care.
This article examines how the category of the elderly in Japan is constructed through diverse forms of care, understood as moral practices intrinsic to peoples’ senses of self. It offers an analysis of a range of informal as well as institutional configurations of care in the Japanese urban context, highlighting the complexity as well as the overlapping nature of these diverse arrangements. It also explores ethnographically how older people experience these arrangements as they move through different sites of care, and how they negotiate the conflicting demands on their sense of self. The various types of care at work in these settings all contribute to different understandings of older persons, and different constructions of the category of the elderly: as clients; as visitors or guests; as fragile ‘struggling persons’; as ‘grannies’ in familial relations; as (caring) neighbours. More than a handful of labels, these variable configurations of personal identity affect care practices and social relationships in direct and tangible ways.
With biomedicine at the forefront of our culture’s understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer’s disease in nursing homes or long-term care facilities that do not always regard the sufferers’ well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer’s sufferer. Furthermore, through the modeling of professional caregiving strategies, I show how one might form meaningful relationships in long-term care facilities, and likewise provide the aging and afflicted person with forms of healing.
Trends in the Turn to Affect: A Social Psychological Critique
This article explores the psychological logics underpinning key perspectives in the ‘turn to affect’. Research on affect raises questions about the categorization of affective states, affective meaning-making, and the processes involved in the transmission of affect. I argue that current approaches risk depopulating affecting scenes, mystifying affective contagion, and authorizing questionable psychobiological arguments. I engage with the work of Sedgwick and Frank, Thrift, and Ahmed to explore these points and suggest that the concept of affective practice offers a more promising social psychological grounding. Notions of affective practice are more commensurate with trends in contemporary psychobiology, explain the limits on affective contagion, and emphasize relationality and negotiation, attentive to the flow of affecting episodes. A practice approach positions affect as a dynamic process, emergent from a polyphony of intersections and feedbacks, working across body states, registrations and categorizations, entangled with cultural meaning-making, and integrated with material and natural processes, social situations and social relationships.
In most common law jurisdictions worldwide, an offender’s remorse is a mitigating factor in sentencing. It matters whether or not a person who has committed a crime is truly sorry for what they have done. And yet how judges evaluate such expressions is unclear. Drawing on 18 interviews with judges in the New South Wales criminal justice system in Australia, this article examines the status of offenders’ live, sworn evidence in the judiciary’s assessment of offenders’ remorse. These interviews with the judiciary reveal that remorse assessment often operates beyond semiotic, representational paradigms (such as ‘demeanour assessment’) and instead works, in experiential terms, as a feeling. When it comes to offenders getting into the witness box and speaking of their remorse, it seems that sometimes something gets felt by judges at the level of embodied affect that then enables them to declare: ‘This person is remorseful.’
Disability and Deleuze: An Exploration of Becoming and Embodiment in Children’s Everyday Environments
Lindsay Stephens, Susan Ruddick, and Patricia McKeever
Building on Deleuze’s theories of the becoming of bodies, and notions of the geographic maturity of the disabled body we formulate an emplaced model of disability wherein bodies, social expectations and built form intersect in embodied experiences in specific environments to increase or decrease the capacity of disabled children to act in those environments. We join a growing effort to generate a more comprehensive model of disability, which moves beyond a binary between the individual and the social. Drawing on in-depth case studies conducted with 13 physically disabled children, we consider the intersections between their primary environments (homes, schools and neighbourhoods) and the multiple subjectivities they embody. Ultimately we make a case about the importance of responsive, situated models of subjectivity for the development of adaptations, and that physical and social adaptations must respond to these children’s complex and varied needs and desires.
Body Image, Prostheses, Phantom Limbs
Cassandra S. Crawford
The body image with respect to physical disability has long been a woefully under-theorized area of scholarship. The literature that does attend to the body image in cases of physical abnormality or functional impairment regularly offer poorly articulated or problematic definitions of the concept, effectively undermining its historic analytic scope and depth. Here, I revisit the epistemic roots of the body image while also engaging the rich contemporary literature from a body studies perspective in order to situate the narratives of amputees about the relationship between dismemberment, prosthetization, phantom limb syndrome, and body image. Stories about living with artificial, fleshy, phantomed, and residual limbs unquestionably reveal a number of peculiarities unique to amputees. However, they also offer a distinctively productive ingress into the analytic utility of a ‘re-visioned’ conceptualization of the body image more broadly speaking. Indeed, the body image can function as a robust investigative tool for exploring the intersubjective, processual, and relational features of embodiment and corporeality.
Intense Embodiment: Senses of Heat in Women’s Running and Boxing
Jacquelyn Allen-Collinson and Helen Owton
In recent years, calls have been made to address the relative dearth of qualitative sociological investigation into the sensory dimensions of embodiment, including within physical cultures. This article contributes to a small, innovative and developing literature utilizing sociological phenomenology to examine sensuous embodiment. Drawing upon data from three research projects, here we explore some of the ‘sensuousities’ of ‘intense embodiment’ experiences as a distance-running-woman and a boxing-woman, respectively. Our analysis addresses the relatively unexplored haptic senses, particularly the ‘touch’ of heat. Heat has been argued to constitute a specific sensory mode, a trans-boundary sense. Our findings suggest that ‘lived’ heat, in our own physical-cultural experiences, has highly proprioceptive elements and is experienced as both a form of touch and as a distinct perceptual mode, dependent upon context. Our analysis coheres around two key themes that emerged as salient: (1) warming up, and (2) thermoregulation, which in lived experience were encountered as strongly interwoven.
This article discusses approaches to forming a bioeconomy in Korea and Taiwan and presents examples of vaccine industrialization in the context of a dual-structured global vaccine market. The dual structure comprises high-priced vaccines manufactured by large companies that use advanced technology and traditional low-cost vaccines. During the mid-1980s, both Taiwan and Korea engaged in industrializing hepatitis B vaccines, which were among the first high-priced vaccines in the world. However, the countries developed into different market structures during the past quarter century. This study involved analyzing approaches to developing a bio-economy in Korea and Taiwan by using a symmetrical approach that explained both the success and failure of technology in a society. We used networks as constructive elements of the bioeconomy to argue that two heterogeneous networks, production and adoption, were critical for constructing the local vaccine market and industry. Korea and Taiwan are characterized according to two network configurations: regeneration and translation, respectively. In Korea, the production network was formed before the adoption network. The production network regenerates vaccines to influence the adoption network. By contrast, the adoption network translates and defines the production network in Taiwan. It implies that, for vaccine technology learners such as Taiwan and Korea to develop the bioeconomy, a local society of translational or regenerative network configuration is as essential as the developmental state.
The article examines how people in post-Soviet Russia learn to interpret Soviet political genealogies as implicated in their own family histories. Based on long-term fieldwork in a large provincial city in Russia, it focuses on a particular form of amateur genealogy called Rodologia (rodstvo = kinship). Informed by a burgeoning self-help culture, Rodologia’s followers argue that psychological “self-realization” can be achieved by identifying the effects of state violence on family histories. Using a Lamarckian-like idea of heredity, Rodologia argues that social and political upheavals, such as gulags, collectivization, and wars, “scar” people’s genes and shape the behavior, self, and history of their descendants. The article demonstrates how popular attempts to attribute meanings to Soviet state violence are mediated by a surprising alliance of two cultural logics for articulating the self emerging in post-Soviet Russia—a thriving therapeutic “self-help” culture and a form of recollection inspired by genealogical imagination. A flourishing therapeutic culture and amateur genealogy, I show, emerge as a means to both organize one’s relation to the Soviet past and to make sense of fundamental changes occurring in meanings of political order in post-Soviet Russia.
‘Fuzzy’ virus: indeterminate influenza biology, diagnosis and surveillance in the risk ontologies of the general public in time of pandemics
Davina Lohm, Mark Davis, Paul Flowers, and Niamh Stephenson
Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy. In time of pandemic influenza, however, members of the general public are asked to enact non-pharmaceutical infection control measures such as hygiene and social distancing. Drawing on the concepts of manufactured risk and ontological insecurity, we use data from interviews and focus groups we undertook in 2011 and 2012 in Melbourne, Sydney and Glasgow, to examine how members of the general public understood the ‘fuzzy’ nature of the influenza virus and reconciled this with infection control measures. We found that participants in our research acknowledged: the difficulty of avoiding infection from influenza; impediments to accurate diagnosis and that infection control measures proposed by public health messages were compromised by the ‘fuzzy’ nature of the virus. However, we found that participants valued prevention measures, not necessarily because they were seen to be effective, but because they supplied security in the face of influenza’s uncertainties and the wider proliferation of daily and biographical risks.
Hau (Open Access)
Anthropology and STS: Generative interfaces, multiple locations
Marisol de la Cadena, Marianne E. Lien, Mario Blaser, Casper Bruun Jensen, Tess Lea, Atsuro Morita, Heather Anne Swanson, Gro B. Ween, Paige West, and Margaret J. Wiener
In this multi-authored essay, nine anthropologists working in different parts of the world take part in a conversation about the interfaces between anthropology and STS (science and technology studies). Through this conversation, multiple interfaces emerge that are heterogeneously composed according to the languages, places, and arguments from where they emerge. The authors explore these multiple interfaces as sites where encounters are also sites of difference—where complex groupings, practices, topics, and analytical grammars overlap, and also exceed each other, composing irregular links in a conversation that produces connections without producing closure.
The June issue of Medical Humanities includes a special feature section entitled “Critical Medical Humanities.” This collection opens with a piece by William Viney, Felicity Callard, and Angela Woods, “Critical Medical Humanities: Embracing Entanglement, Taking Risks.” As described in their abstract:
What can the medical humanities achieve? This paper does not seek to define what is meant by the medical humanities, nor to adjudicate the exact disciplinary or interdisciplinary knowledges it should offer, but rather to consider what it might be capable of doing. Exploring the many valences of the word ‘critical’, we argue here for a critical medical humanities characterised by: (i) a widening of the sites and scales of ‘the medical’ beyond the primal scene of the clinical encounter; (ii) greater attention not simply to the context and experience of health and illness, but to their constitution at multiple levels; (iii) closer engagement with critical theory, queer and disability studies, activist politics and other allied fields; (iv) recognition that the arts, humanities and social sciences are best viewed not as in service or in opposition to the clinical and life sciences, but as productively entangled with a ‘biomedical culture’; and, following on from this, (v) robust commitment to new forms of interdisciplinary and cross-sector collaboration. We go on to introduce the five other articles published in this special issue of the journal, reflecting on the ways in which collaboration and critique are articulated in their analyses of immunology, critical neuroscience, toxicity, global clinical labour, and psychological coercion and workfare. As these articles demonstrate, embracing the complex role of critical collaborator—one based on notions of entanglement, rather than servility or antagonism—will, we suggest, develop the imaginative and creative heterodox qualities and practices which have long been recognised as core strengths of the medical humanities.
This special section then moves onto five original articles and corresponding response pieces.
Homo Immunological: On the Limits of Critique
Through a discussion of a range of research drawn from the humanities and social sciences, and with a particular emphasis on work that tackles questions about the discourse of the life sciences, this paper considers some of the difficulties with research that aims to offer a critical analysis of immunology and its relationship to culture. It considers in particular arguments made on behalf of a biopolitical reading of the life sciences and, by examining the uncertain shift between discursive analysis and philosophical claim, it seeks to address some of the underlying assumptions made about the relations between different kinds of knowledge practice in the interplay between life science, philosophy and culture. Drawing on the work of Belgian philosopher of science Isabelle Stengers to consider the ways in which critical and philosophical appraisals of immunology adopt a characteristically modern stance in the way that they address the life sciences, it further seeks to characterise some of the limits that such forms of critique display.
This programmatic theory paper sketches a conceptual framework that might inspire work in critical Medical Humanities. For this purpose, Kaushik Sunder Rajan’s account of biocapital is revisited and discussed in relation to the perspective of a critical neuroscience. Critical neuroscience is an encompassing positioning towards the recent public prominence of the brain and brain-related practices, tools and discourses. The proposed analytical scheme has five focal nodes: capital, life, technoscience, (neoliberal) politics and subjectivity. A special emphasis will be placed on contemporary framings of subjectivity, as it is here where deep-reaching entanglements of personhood with scientific practice and discourse, medical and informational technologies, and economic formations are most evident. Notably, the emerging subject position of the ‘prospective health consumer’ will be discussed as it figures prominently in the terrain between neuroscience and other medico-scientific disciplines.
Moving Beyond Discourse: A Response to Jan Slaby
This article examines concepts whose strictly medical applications have only partly informed their widespread use and suggests that demonstrably shared logics motivate our thinking across domains in the interest of a politically just engagement. It considers exchanges between the culturally complex concepts of ‘toxicity’ and ‘intoxication’, assessing the racialised conditions of their animation in several geopolitically—and quite radically—distinct scenarios. First, the article sets the framework through considering the racial implications of impairment and disability language of ‘non-toxic’ finance capital in the contemporary US financial crisis. Shifting material foci from ‘illiquid financial bodies’ to opiates while insisting that neither is ‘more’ metaphorically toxic than the other, the article turns to address the role of opium and temporality in the interanimations of race and disability in two sites of 19th-century British empire: Langdon Down’s clinic for idiocy, and China’s retort on opium to Queen Victoria. The article concludes with a provocation that suggests yet another crossing of borders, that between researcher and researched: ‘intoxicated method’ is a hypothetical mode of approach that refuses idealised research positions by ‘critically disabling’ the idealised cognitive and conceptual lens of analysis.
Narratives of Neoliberalism: ‘Clinical Labor’ in Context
Cross-border reproductive care has been thrust under the international spotlight by a series of recent scandals. These have prompted calls to develop more robust means of assessing the exploitative potential of such practices and the need for overarching and normative forms of national and international regulation. Allied theorisations of the emergence of forms of clinical labour have cast the outsourcing of reproductive services such as gamete donation and gestational surrogacy as artefacts of a wider neoliberalisation of service provision. These accounts share with many other narratives of neoliberalism a number of key assertions that relate to the presumed organisation of labour relations within this paradigm. This article critically engages with four assumptions implicit in these accounts: that clinical labourers constitute a largely homogeneous underclass of workers; that reproductive labour has been contractualised in ways that disembed it from wider social and communal relations; that contractualisation can provide protection for clinical labour lessening the need for formal regulatory oversight; and that the transnationalisation of reproductive service labour is largely unidirectional and characterised by a dynamic of provision in which ‘the rest’ services ‘the West’. Drawing on the first findings of a large-scale ethnographic research project into assisted reproduction in India I provide evidence to refute these assertions. In so doing the article demonstrates that while the outsourcing and contractualisation of reproductive labour may be embedded in a wider neoliberal paradigm these practices cannot be understood nor their impacts be fully assessed in isolation from their social and cultural contexts.
Positive Affect as Coercive Strategy: Conditionality, Activation and the Role of Psychology in UK Government Workfare Programmes
Lynne Friedli and Robert Stearn
Eligibility for social security benefits in many advanced economies is dependent on unemployed and underemployed people carrying out an expanding range of job search, training and work preparation activities, as well as mandatory unpaid labour (workfare). Increasingly, these activities include interventions intended to modify attitudes, beliefs and personality, notably through the imposition of positive affect. Labour on the self in order to achieve characteristics said to increase employability is now widely promoted. This work and the discourse on it are central to the experience of many claimants and contribute to the view that unemployment is evidence of both personal failure and psychological deficit. The use of psychology in the delivery of workfare functions to erase the experience and effects of social and economic inequalities, to construct a psychological ideal that links unemployment to psychological deficit, and so to authorise the extension of state—and state-contracted—surveillance to psychological characteristics. This paper describes the coercive and punitive nature of many psycho-policy interventions and considers the implications of psycho-policy for the disadvantaged and excluded populations who are its primary targets. We draw on personal testimonies of people experiencing workfare, policy analysis and social media records of campaigns opposed to workfare in order to explore the extent of psycho-compulsion in workfare. This is an area that has received little attention in the academic literature but that raises issues of ethics and professional accountability and challenges the field of medical humanities to reflect more critically on its relationship to psychology.
This article ethnographically analyses how groups (and not just individuals) are produced in business process outsourcing (BPO) workplaces. In order to mitigate an unstable labour pool, corporations hire deaf workers to perform identical BPO work regardless of their qualifications and backgrounds. These hiring practices serve to cement existing relationships and produce deaf workers as a group marked only by deafness. This article explores how engaging in the same work articulates with deaf young adults’ ‘sameness work’ to produce ambivalent deaf groups. It also analyses the everyday practices of deaf employees, their relationships with their normal co-workers who ‘love’ them, and the ways that value is reconfigured in the workplace through the existence of disabled workers. This article argues that in contrast to dominant representations of disabled people as unemployable, the (re)inscription of deafness as a source of multiple forms of value begs for a broader analysis of the role of disability in late capitalism.
Bodily Rights and Collective Claims: The Work of Legal Activists in Interpreting Reproductive and Maternal Rights in India
Carolyn Heitmeyer and Maya Unnithan
This article engages with anthropological approaches to the study of global human rights discourses around reproductive and maternal health in India. Whether couched in the language of human rights or of other social justice frameworks, different forms of claims-making in India exist in tandem and correspond to particular traditions of activism and struggle. Universal reproductive rights language remains a discourse aimed at the state in India, where the primary purpose is to demand greater accountability in the domain of policy and governance. Outside of these spheres, other languages are strategically chosen by activists for their greater resonance in addressing individual cases of women claiming reproductive violence within the context of the family as well as localized histories of feminist struggle and social justice. In focusing on the work of legal activists and the discourses which inform their interventions, this article seeks to understand how the language of reproductive rights is used in the context of India, not as a `Western import’ which is adapted to local contexts, but rather as one of multiple frameworks of claims-making drawn upon by legal activists emerging from distinct histories of struggle for gender equality and social justice.
Waldorf education, an independent alternative to public schooling, aims to produce holistically healthy graduates in a formulation that rejects the conventional distinction between education and health. Also striving to bridge that divide, this article characterizes the pedagogically salutogenic techniques Waldorf teachers use in pre-kindergarten (pre-K) and lower grade classes and explicates the ethnomedical understandings underlying them. Waldorf teachers position children as budding participants in a unified field of spiritual and other forces, prioritizing whole-child activities that keep these forces healthfully motile. Their work entails a critique not only of mainstream public schooling’s ostensibly pathogenic “head-to-head” focus, but also of the biomedical approach to pediatric health. My analysis of this conjoined critique takes into account the cultural, structural, and existential realities within which Waldorf education’s salutary pedagogy is daily framed and fabricated. Further, it explores the implications for anthropology of attending to movement as a key feature of healthful human experience.
Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD
Emery R. Eaves, Mark Nichter, Cheryl Ritenbaugh, Elizabeth Sutherland, and Samuel F. Dworkin
Temporomandibular Disorders (TMD) represent a particular form of chronic pain that, while not outwardly debilitating, profoundly impacts interactions as fundamental to human existence as smiling, laughing, speaking, eating, and intimacy. Our analysis, informed by an expanded “works of illness” assessment, draws attention to work surrounding social and physical risk. We refer to these as the work of stoicism and the work of vigilance and identify double binds created in contexts that call for both. Conflicting authorial stances in informants’ narratives are shown to be essential in maintaining a positive identity in the face of illness. While earlier ethnographic studies report TMD sufferers’ experience of stigma and search for diagnosis and legitimacy, we present a group of individuals who have accepted diagnosis at face value and soldier through pain as a fundamental aspect of their identity.
This article employs a multi-species perspective in investigating how life’s worth is negotiated in the field of neonatology in Denmark. It does so by comparing decision-making processes about human infants in the Danish neonatal intensive care unit with those associated with piglets who serve as models for the premature infants in research experiments within neonatology. While the comparison is unusual, the article argues that there are parallels across the decision-making processes that shape the lives and deaths of infants and pigs alike. Collectivities or the lack thereof as well as expectations within linear or predictive time frames are key markers in both sites. Exploring selective reproductive processes across human infants and research piglets can help us uncover aspects of the cultural production of viability that we would not otherwise see or acknowledge.
In this article, I examine the various meanings of Mexican and Central American migrant women’s utilization of private food assistance programs. I present findings from 20 months of ethnographic fieldwork conducted between 2008 and 2011 with migrant women, public health workers, and staff and volunteers of food assistance programs in Santa Barbara County, California. I discuss the barriers undocumented women face in accessing formal health care and the social and moral obligations that underpin these women’s role in feeding others. I also document the ways in which private food assistance programs are orienting toward a focus on health in service delivery, and how women depend on provisions from these programs to support feeding practices at home. I argue that these findings are significant for current engagement by critical medical anthropologists in studying framings of “the clinic” and cultural beliefs about “deservingness.”
Communicating ‘Evidence’: Lifestyle, Cancer, and the Promise of a Disease-Free Future
Kirsten Bell and Svetlana Ristovski-Slijepcevic
In the era of evidence-based health care, conferences aimed at disseminating scientific knowledge perform an essential role in shaping policy and research agendas and transforming physician practice. Drawing on observations at two U.S. cancer prevention conferences aimed at knowledge translation, we examine the ways that evidence regarding the relationship between cancer and lifestyle is articulated and enacted. We show that characterizations of the evidence base at the conferences far outstripped what is presently known about the relationship between cancer and lifestyle. The messages presented to conference participants were also personalized and overtly moralistic, with attendees engaged not merely as practitioners but as members of the public at risk for cancer. We conclude that conferences seeking to bring together knowledge “makers” and knowledge “users” play a potentially important role in the production of scientific facts and are worthy of further study as distinct sites of knowledge production.
Global Health Care-seeking Discourses Facing Local Clinical Realities: Exploring the Case of Cancer
Rikke Sand Andersen, Marie Louise Tørring, and Peter Bedsted
Using cancer as an example and drawing on Pierre Bourdieu’s concepts of field and on prolonged fieldwork in Danish general medical practice settings, we examine how discourses about what counts as legitimate help-seeking practices are negotiated in local clinical encounters. Overall, we identify competition between two discourses on help-seeking practices. This competition is present most when people seek help with unspecific, vague, or diffuse illness complaints, voicing uncertainty as to what counts as signs of illness, characteristic of proactive discourses emanating from global, scientific biomedicine. Such indistinct help-seeking conflicts with the dominant discourse in the local clinical setting and is characterized by an overt focus on identification of the chief complaint. The analysis illustrates how competing discourses may result in conflicting expectations to the clinical encounter and prove counterproductive to ensuring early diagnosis of cancer.
A Chilling Example? Uruguay, Philip Morris International, and WHO’s Framework Convention on Tobacco Control
Andrew Russell, Megan Wainwright, and Hadii Mamudu
The World Health Organization’s Framework Convention on Tobacco Control (FCTC) is the first international public health treaty to address the global spread of tobacco products. Ethnographic research at the fourth meeting of the FCTC’s Conference of the Parties in Uruguay highlights the role of the FCTC in recalibrating the relationship between international trade and investment agreements and those of global public health. Specifically, we chart the origins and development of the Punta del Este Declaration, tabled by Uruguay at the conference, to counter a legal request by Philip Morris International, the world’s largest tobacco transnational, for arbitration by the International Centre for the Settlement of Investment Disputes over Uruguay’s alleged violations of several international trade and investment treaties. We argue that medical anthropologists should give greater consideration to global health governance and diplomacy as a potential counterweight to the ‘politics of resignation’ associated with corporate capitalism.
Drawing on multiple literatures from history, geography, anthropology, sociology and literature, this essay asks questions about what we mean by region and why narratives of region should matter to the medical humanities. The essay surveys how region can be used as a lens of analysis, exploring the various academic approaches to region and their limitations. It argues that regions are dynamic but also unstable as a category of analysis and are often used uncritically by scholars. In encouraging scholars working in the medical humanities to be aware that regions are not simple objective or analytical boxes, the essay shows how an awareness of region helps challenge metropolitan whiggism and ideas of core and periphery to give a more prominent place to hinterlands, market towns and rural environments. Furthermore, the essay considers how incorporating region into our understanding of illness can offer new insights. It demonstrates the need for scholars to be attuned to the narratives constructed around regions, suggesting that regions can be viewed as discursive formations that provide a frame for understanding both collective and personal ideas of, and responses to, health and illness, disease and healing, to create what Megan Davies calls a more nuanced ‘intellectual cartography’.
Henry’s Voices: The Representation of Auditory Verbal Hallucinations in an Autobiographical Narrative
Zsófia Demjén and Elena Semino
The book Henry’s Demons (2011) recounts the events surrounding Henry Cockburn’s diagnosis of schizophrenia from the alternating perspectives of Henry himself and his father Patrick. In this paper, we present a detailed linguistic analysis of Henry’s first-person accounts of experiences that could be described as auditory verbal hallucinations. We first provide a typology of Henry’s voices, taking into account who or what is presented as speaking, what kinds of utterances they produce and any salient stylistic features of these utterances. We then discuss the linguistically distinctive ways in which Henry represents these voices in his narrative. We focus on the use of Direct Speech as opposed to other forms of speech presentation, the use of the sensory verbs hear and feel and the use of ‘non-factive’ expressions such as I thought and as if. We show how different linguistic representations may suggest phenomenological differences between the experience of hallucinatory voices and the perception of voices that other people can also hear. We, therefore, propose that linguistic analysis is ideally placed to provide in-depth accounts of the phenomenology of voice hearing and point out the implications of this approach for clinical practice and mental healthcare.
Choreographing Lived Experience: Dance, Feelings and the Storytelling Body
Karin Eli and Rosie Kay
Although narrative-based research has been central to studies of illness experience, the inarticulate, sensory experiences of illness often remain obscured by exclusively verbal or textual inquiry. To foreground the body in our investigation of subjective and intersubjective aspects of eating disorders, we—a medical anthropologist and a contemporary dance choreographer—designed a collaborative project, in which we studied the experiences of women who had eating disorders, through eight weeks of integrating dance practice-based, discussion-based and interview-based research. Grounded in the participants’ own reflections on choreographing, dancing and watching others perform solos about their eating disordered experiences, our analysis examines the types of knowledge the participants used in choreographing their dance works, and the knowledge that they felt the dance enabled them to convey. We find that the participants consistently spoke of feeling as guiding their choreographic processes; they also said the experiences they conveyed through their dance works were centred in feelings, rather than in practices or events. Through dance, the participants said they could communicate experiences that would have remained unspoken otherwise. Yet, notably, dance practice also enabled participants to begin defining and describing their experiences verbally. We suggest, therefore, that through engaging participants in contemporary dance practice, we can begin to identify and address embodied experiences of illness and recovery that may be silenced in speech or writing alone.
The Impact of an Arts-Based Programme on the Affective and Cognitive Components of Empathic Development
Joyce Zazulak, Camilla Halgren, Megan Tan, and Lawrence E.M. Grierson
Medical education research demonstrates that empathic behaviour is amenable to positive change when targeted through educational programmes. This study evaluates the impact of an arts-based intervention designed to nurture learner empathy through the provision of facilitated visual literacy activities. Health Sciences students (N=19) were assigned to two learning groups: a group that participated in a visual literacy programme at the McMaster Museum of Art and a control group that participated in the normal Health Sciences curriculum. All participants completed an inter-reactivity index, which measures empathy on affective and cognitive levels, prior to and following the programme. Those individuals assigned to the visual literacy programme also completed open-ended questions concerning the programme’s impact on their empathic development. The index scores were subjected to independent within-group, between-test analyses. There was no significant impact of the programme on the participants’ overall empathic response. However, sub-component analyses revealed that the programme had a significant positive effect on cognitive aspects of empathy. This finding was substantiated by the narrative reports. The study concludes that the affective focus of humanities-based education needs to be enhanced and recommends that learners are educated on the different components that comprise the overall empathic response.
In this paper, I firstly situate the current rise of interest in epigenetics in the broader history of attempts to go “beyond the gene” in twentieth-century biology. In the second part, after a summary of the main differences between epigenetic and genetic mutations, I consider what kind of implications the sui generis features of epigenetic mutations may have for the social sciences. I focus in particular on two sites of investigation: (a) the blurring of the boundaries between natural and social inequalities in theories of justice and their possible implications for public policy and public health and (b) a deepening of the notion that the constitution of the body is deeply dependent on its material and socially shaped surroundings (“embodied constructivism”). In conclusion, I advance some cautionary reflections on some of the (known and unprecedented) problems that the circulation of epigenetics in wider society may present.
How the Genome Got a Life Span
Martine Lappé and Hannah Landecker
In the space of little more than a decade, ideas of the human genome have shifted significantly, with the emergence of the notion that the genome of an individual changes with development, age, disease, environmental inputs, and time. This paper examines the emergence of the genome with a life span, one that experiences drift, instability, and mutability, and a host of other temporal changes. We argue that developments in chromatin biology have provided the basis for this genomic embodiment of experience and exposure. We analyze how time has come to matter for the genome through chromatin, providing analysis of examples in which the human life course is being explored as a set of material changes to chromatin. A genome with a life span aligns the molecular and the experiential in new ways, shifting ideas of life stages, their interrelation, and the temporality of health and disease.
Epigenetic Determinism in Science and Society
Miranda R. Waggoner and Tobias Uller
The epigenetic “revolution” in science cuts across many disciplines, and it is now one of the fastest-growing research areas in biology. Increasingly, claims are made that epigenetics research represents a move away from the genetic determinism that has been prominent both in biological research and in understandings of the impact of biology on society. We discuss to what extent an epigenetic framework actually supports these claims. We show that, in contrast to the received view, epigenetics research is often couched in language as deterministic as genetics research in both science and the popular press. We engage the rapidly emerging conversation about the impact of epigenetics on public discourse and scientific practice, and we contend that the notion of epigenetic determinism – or the belief that epigenetic mechanisms determine the expression of human traits and behaviors – matters for understandings of the influence of biology and society on population health.
Metaphors in Search of a Target: The Curious Case of Epigenetics
Aleksandra Stelmach and Brigitte Nerlich
Carrying out research in genetics and genomics and communicating about them would not be possible without metaphors such as “information,” “code,” “letter” or “book.” Genetic and genomic metaphors have remained relatively stable for a long time but are now beginning to shift in the context of synthetic biology and epigenetics. This article charts the emergence of metaphors in the context of epigenetics, first through collecting some examples of metaphors in scientific and popular writing and second through a systematic analysis of metaphors used in two UK broadsheets. Findings show that while source domains for metaphors can be identified, such as our knowledge of electrical switches or of bookmarks, it is difficult to pinpoint target domains for such metaphors. This may be indicative both of struggles over what epigenetics means for scientists (natural and social) and of difficulties associated with talking about this, as yet, young field in the popular press.
Epigenetics: Localizing Biology Through Co-Laboration
This paper reports on a co-laborative laboratory ethnography in a molecular biology laboratory conducting research on environmental epigenetics. It focuses on a single study concerned with the material implications of social differentiation. The analysis briefly raises biopolitical concerns. Its main concern lies with an understanding of the human body as local in its working infrastructure or “inner laboratory”, an understanding that emerges from the co-laborative inquiry between biologists and anthropologist. This co-laborative mode of inquiry raises productive tensions within biology as to the universal or local nature of human nature and within anthropology as to the status of human biology within social theory. The paper cannot resolve this tension. Rather it explores it as an epistemic object in the context of interdisciplinarity, ontography and co-laboration. In concluding, it specifies co-laboration as temporary, non-teleological joint epistemic work aimed at producing new kinds of reflexivity.
Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.
Regenerative medicine (RM) in Japan lays strong emphasis on a specific trajectory of its development, which deploys human induced pluripotent stem (iPS) cells as the primary sources for the technology. The technique to create these stem cells was developed in 2006 by a Japanese stem cell scientist, Shinya Yamanaka, and since its applicability to human cells was established about a year later, this new type of cells has become to be considered as a potential substitute for human embryonic stem cells. While the clinical value of these cells are yet to be confirmed, the Japanese Ministry of Education, Culture, Sports, Science and Technology decided to concentrate its support on iPS cells research and turned it into a national project. This decision reflected the state’s vision of initiating the transition to a knowledge-based society, which was adopted in the 1990s to tackle the prolonged deflation in the country. As the research became intertwined with this policy vision, however, the Ministry came to see bringing its success as more important than ever, while other trajectories of RM were left underrated and largely unsupported. Industrial actors counteracted this situation and developed an initiative to recognize existing technical capability in the country, but its impact has been so far negligible. This indicates that the nation is locked in the particular trajectory of RM. Hence, this Japanese RM research enterprise presents an interesting case to understand how states’ commitment may not only shape the course of scientific research but also reduce flexibility in technological development.
Across different kinds of modern influences on human sleep—from communication and media technologies, to medical interventions and chemicals used to modify sleep and wakefulness, to the organization of social life—some are seen as interfering with human nature. Others, like many institutions, are accepted as natural. This is apparent in the example of school start times, which are widely assumed to be based on an agrarian past. Unlike modern media technologies, school start times are often implicitly accepted as based in nature, and help constitute a sense of a historical primordial natural state in which humans lived in harmony with nature. The presumed naturalness of institutional times stands in opposition to modern media technologies and laboratory-derived chemicals, which are often criticized for being disruptive to our human natures and as having negative impacts on our sleep patterns. In some cases, technology may be serving as a distraction, interfering with a child’s sleep, but technology also provides an easy object of criticism, for physicians, scientists, and parents. In doing so, normative social expectations and the institutions that frame them escape criticism in the face of blaming the disorderly behavior of individuals.
Real-world experiments that test new technologies can affect policy and practice by introducing new objects of intervention through tinkering; the ad hoc work of realigning relations in the face of frictions, surprises, and disturbances that occur when introducing a technology. In a pilot study on aggression detection, tinkering moved aggression in and out of the human body. In the end, the pilot defined aggression as a set of acoustic-physical variables representing the aroused human body, alongside other signals of aggression. How aggression as an object intervention was shaped by tinkering is relevant because it involved inclusions and exclusions by the authorities who identified aggression, the methods they applied, and mandate for intervention. A focus on relations that are tinkered within a real-world experiment permits critical engagement with this format. Although the real-world experimental format is credited with producing knowledge about a technology’s ‘actual’ performance, actors and events at the pilot study location were made only selectively relevant. Analyses of real-world experiments should therefore explain how experiments selectively make the world relevant, giving only particular objects of intervention a truth status.
Racial health disparities in the United States are produced and perpetuated through public policies that differentially allocate risks and resources for health. Elected officials have the ability modify the structural determinants of racial health disparities through policy decisions and, through voting, the electorate can influence the extent to which these policy decisions promote health equity. In this commentary, I synthesize research on the voting behavior of electorates and policy decisions and present strategies to foster sociopolitical environments that are conducive to the implementation and enforcement of racial health disparity reduction initiatives. There is a need for research that contributes to a more comprehensive understanding of the role of voting in health policy making processes and further development of empirically-based policy advocacy strategies.
Birth-Cohort Trends in Older-Age Functional Disability and their Relationship with Socio-Economic Status: Evidence From a Pooling of Repeated Cross-Sectional Population-Based Studies for the U.K.
Marcello Morciano, Ruth M. Hancock, and Stephen E. Pudney
We examine birth-cohort trends behind recent changes in the prevalence of functional disability in the older population living in private households in the United Kingdom (UK). By using three different socio-economic indicators available in the nationally representative cross-sectional data on older individuals interviewed between 2002 and 2012 in the Family Resource Survey (FRS) (96,733 respondents), we investigate the extent to which the overall trends have been more favourable among more advantaged than disadvantaged socioeconomic groups. Compared to the cohort of people born in 1924, successive cohorts of older men have lower odds of having at least one functional difficulty (FD), whereas no significant trend was found for women. Among people with at least one FD, however, the number of disabilities increases for each successive cohort of older women (incidence rate ratio 1.027, 95% confidence interval 1.023 to 1.031, P < 0.001) and men (incidence rate ratio 1.028, 95% confidence interval 1.024 to 1.033, P < 0.001). By allowing interactions between birth cohort and SES indicators, a significant increasing cohort trend in the number of reported FDs was found among older men and women at lower SES, whereas an almost stable pattern was observed at high SES. Our results suggest that the overall slightly increasing birth-cohort trend in functional difficulties observed among current cohorts of older people in the UK hides underlying increases among low SES individuals and a relative small reduction among high SES individuals. Further studies are needed to understand the causes of such trends and to propose appropriate interventions. However, if the SES differentials in trends in FDs observed in the past continue, this could have important implications for the future costs of the public system of care and support for people with care needs.
Neighborhood Effects in Depressive Symptoms, Social Support, and Mistrust: Longitudinal Analysis with Repeated Measurements
Jaako Airaksinen, Christian Hakulinen, Marko Elovainio, Terho Lehtimäki, Olli Raitakari, Liisa Keltikangas-Järvinen, and Markus Jokela
While many associations between neighborhood characteristics and individual well-being have been reported, there is a lack of longitudinal studies that could provide evidence for or against causal interpretations of neighborhood effects. This study examined whether neighborhood urbanicity and socioeconomic status were associated with within-individual variation in depression, mistrust and social support when individuals were living in different neighborhoods with different levels of urbanicity and socioeconomic status. Participants were from the Young Finns prospective cohort study (N = 3074) with five repeated measurement times in 1992, 1997, 2001, 2007, and 2011. Neighborhood urbanicity and socioeconomic status were measured at the level of municipalities and zip-code areas. Within-individual variation over time was examined with multilevel regression, which adjusted the models for all stable individual differences that might confound associations between neighborhood characteristics and individual well-being. Social support from friends was higher in urban areas and in areas with higher socioeconomic status, whereas social support from the family was higher in rural areas. These associations were observed also in the within-individual analyses, and they were partly accounted for by employment and socioeconomic status of the participants. There were no associations between neighborhood characteristics and depression or mistrust. These findings suggest that people receive less support from their families and more support from their friends when living in urban compared to rural regions of Finland. These differences are partly explained by people’s changing socioeconomic and employment statuses.
Climate Change Influences on Environment as a Determinant of Indigenous Health: Relationships to Place, Sea Ice, and Health in an Inuit Community
Agata Durkalec, Chris Furgal, Mark W. Skinner, and Tom Sheldon
This paper contributes to the literature on Indigenous health, human dimensions of climate change, and place-based dimensions of health by examining the role of environment for Inuit health in the context of a changing climate. We investigated the relationship between one key element of the environment – sea ice – and diverse aspects of health in an Inuit community in northern Canada, drawing on population health and health geography approaches. We used a case study design and participatory and collaborative approach with the community of Nain in northern Labrador, Canada. Focus groups (n = 2), interviews (n = 22), and participant observation were conducted in 2010–11. We found that an appreciation of place was critical for understanding the full range of health influences of sea ice use for Inuit. Negative physical health impacts were reported on less frequently than positive health benefits of sea ice use, which were predominantly related to mental/emotional, spiritual, social, and cultural health. We found that sea ice means freedom for sea ice users, which we suggest influences individual and collective health through relationships between sea ice use, culture, knowledge, and autonomy. While sea ice users reported increases in negative physical health impacts such as injuries and stress related to changing environmental conditions, we suggest that less tangible climate change impacts related to losses of health benefits and disruptions to place meanings and place attachment may be even more significant. Our findings indicate that climate change is resulting in and compounding existing environmental dispossession for Inuit. They also demonstrate the necessity of considering place meanings, culture, and socio-historical context to assess the complexity of climate change impacts on Indigenous environmental health.
Internal Migration, Area Effects and Health: Does Where You Move to Impact Upon Your Health?
Mark A. Green, S.V. Subramanian, Daniel Vickers, and Danny Dorling
Evidence surrounding the importance of neighbourhood on health has been mostly restricted to observational data analyses. However, observational data are often the only source of information available to test this association and can fail to accurately draw out casual effects. This study employs a pseudo-experimental design to provide a novel test for the evidence of neighbourhood effects on health, using migration as a mechanism for assessing the role of neighbourhood. Coarsened exact matching was employed on the British Household Panel Survey (2006–2008) to analyse the association between migration (by area type, measured using a classification of mortality patterns) and health. Although an overall significant positive association between migration and health was observed, once the effect was disaggregated by location and destination it disappeared. Rather, evidence of health selective migration was found whereby individuals of poorer health migrated to areas that displayed poorer health and social characteristics (and vice versa). Migration is an important process that through the social sorting of individuals in terms of their health, contributes to the growing polarisation and inequality in health patterns. The study helps to build upon previous research through providing a new and stronger form of analysis that reduces the influence of bias on results. Incorporating this under-utilised methodology and research design in future studies could help develop public health and geographical research.
A Systematic Approach to Implementing and Evaluating Clinical Guidelines: The Results of Fifteen Years of Preventive Child Health Care Guidelines in the Netherlands
Margot A.H. Fleuren, Paula van Dommelen, and Trudy Dunnink
Preventive Child Health Care (PCHC) services are delivered to all children in the Netherlands by approximately 5500 doctors, nurses and doctor’s assistants. In 1996, The Dutch Ministry of Health, Welfare and Sports asked for the development of evidence-based PCHC guidelines. Since 1998, twenty-five guidelines have been published. Levels of implementation affect outcomes and so implementation and evaluation of the actual use of guidelines are essential. At the outset, there was a national implementation plan with six main activities: a) determinant analysis before the implementation of a guideline, b) innovation strategies tailored to the determinants, c) dissemination to all professionals, d) ongoing evaluation of the awareness and use of the guidelines, e) trained implementation coordinator(s) in each PCHC organization and f) a national help desk.
The awareness and use of the guidelines in random samples of doctors, nurses and doctor’s assistants were surveyed using questionnaires. The respondents stated (on a 7-point scale) the proportion of all children they had exposed to given core elements in a guideline. The aim is for at least 90% of the professionals to be aware of the guideline and for 80% to perform the core elements for all (or nearly all) children. The six main activities, with the exception of ongoing evaluation, were gradually put into place, albeit only gradually, between 1998 and 2015 for all guidelines. In 2012, the use of individual core elements in all guidelines, dating from before 2012, varied from 28% to 100%. One guideline met both criteria of 90% awareness and 80% use, and three guidelines nearly met these criteria.
Looking back on fifteen years of PCHC guidelines, we may conclude that the guidelines produced recently are implemented in accordance with the national implementation plan. Unfortunately, the evaluation of guideline use continues to be a difficulty.
The Effect of a Severe Health Shock on Work Behavior: Evidence from Different Health Care Regimes
Nabanita Datta Gupta, Kristin J. Kleinjans, and Mona Larsen
In this paper, we use the policy variation of two different types of health insurance in the US and in Denmark – employer-provided and universal insurance combined with substantial differences in expected and actual medical out-of-pocket expenditures – to explore the effect of new severe health shocks on the labor force participation of older workers. Our results not only provide insight into how relative disease risk affects labor force participation at older ages, but also into how different types of health care and health insurance systems affect individual decisions of labor force participation. Although employer-tied health insurance and greater out-of-pocket medical expenditures give US Americans greater incentives to continue to work, we find only small differences in the work response between the two countries. We provide compelling evidence that our somewhat counterintuitive finding is the result of differential mortality and baseline health differences coupled with distinct treatment regimes under the respective health care systems.
Globalization, Democracy, and Child Health in Developing Countries
Anna Welander, Carl Hampus Lyttkens, and Therese Nilsson
Good health is crucial for human and economic development. In particular poor health in childhood is of utmost concern since it causes irreversible damage and has implications later in life. Recent research suggests globalization is a strong force affecting adult and child health outcomes. Yet, there is much unexplained variation with respect to the globalization effect on child health, in particular in low- and middle-income countries. One factor that could explain such variation across countries is the quality of democracy. Using panel data for 70 developing countries between 1970 and 2009 this paper disentangles the relationship between globalization, democracy, and child health. Specifically the paper examines how globalization and a country’s democratic status and historical experience with democracy, respectively, affect infant mortality. In line with previous research, results suggest that globalization reduces infant mortality and that the level of democracy in a country generally improves child health outcomes. Additionally, democracy matters for the size of the globalization effect on child health. If for example Côte d’Ivoire had been a democracy in the 2000–2009 period, this effect would translate into 1200 fewer infant deaths in an average year compared to the situation without democracy. We also find that nutrition is the most important mediator in the relationship. To conclude, globalization and democracy together associate with better child health in developing countries.
In hospital care, management of the risk of infection represents a crucial issue. Nevertheless, this question remains a neglected area in anthropological research, especially in African countries. To shed new light on this question, we conducted an anthropological investigation in the infectious disease department of a hospital in Niger. Daily observation of the work of the hospital staff for a total period of 6 months was spread out over 2008 and 2009. During our prolonged stay, we also collected 64 in-depth interviews of health care workers and attendants in the department. This study method made it possible to describe many of the practices and discourses related to the issues of medical and personal care and hospital hygiene and to compare the practices observed to standard principles for preventing hospital-acquired infections. Our ethnographic attention to the behavior of the actors showed the absence of formal spatial segmentations between different activities. The care provided by the untrained relatives serving as personal attendants introduced territorial enclaves governed by home hygiene standards into the interior of technical spaces. At the same time, privatizing equipment and space for their diverse activities, the medical staff disrupted technical chains and generated the recurrent crossing of microbial geographies. These results allow us to offer two principal guidelines for improving the quality of care and the management of risks of infection in hospitals in West Africa: (1) the essential role of the attendants in the care provided to hospital inpatients must be officially taken into account, especially by including them in the organization of medical hygiene procedures; (2) the different overlapping technical activities and social activities in the work space must be limited by their geographic and architectural segmentation.
Epidemics in Ming and Qing China: Impacts of Changes of Climate and Economic Well-Being
Qing Pei, David D. Zhang, Guodong Li, Bruce Winterhalder, and Harry F. Lee
We investigated the mechanism of epidemics with the impacts of climate change and socio-economic fluctuations in the Ming and Qing Dynasties in China (AD 1368–1901). Using long-term and high-quality datasets, this study is the first quantitative research that verifies the ‘climate change → economy → epidemics’ mechanism in historical China by statistical methods that include correlation analysis, Granger causality analysis, ARX, and Poisson-ARX modeling. The analysis provides the evidences that climate change could only fundamentally lead to the epidemics spread and occurrence, but the depressed economic well-being is the direct trigger of epidemics spread and occurrence at the national and long term scale in historical China. Moreover, statistical modeling shows that economic well-being is more important than population pressure in the mechanism of epidemics. However, population pressure remains a key element in determining the social vulnerability of the epidemics occurrence under climate change. Notably, the findings not only support adaptation theories but also enhance our confidence to address climatic shocks if economic buffering capacity can be promoted steadily. The findings can be a basis for scientists and policymakers in addressing global and regional environmental changes.
Occupational Closure in Nursing Work Reconsidered: UK Health Care Support Workers and Assistant Practitioners: A Focus Group Study
Michael Traynor, Nina Nissen, Carol Lincoln, and Niels Buus
In healthcare, occupational groups have adopted tactics to maintain autonomy and control over their areas of work. Witz described a credentialist approach to occupational closure adopted by nursing in the United Kingdom during the 19th and early 20th centuries. However, the recent advancement of assistant, ‘non-qualified’ workers by governments and managers forms part of a reconfiguration of traditional professional work. This research used focus groups with three cohorts of healthcare support workers undertaking assistant practitioner training at a London university from 2011 to 13 (6 groups, n = 59). The aim was to examine how these workers positioned themselves as professionals and accounted for professional boundaries. A thematic analysis revealed a complex situation in which participants were divided between articulating an acceptance of a subordinate role within traditional occupational boundaries and a usurpatory stance towards these boundaries. Participants had usually been handpicked by managers and some were ambitious and confident in their abilities. Many aspired to train to be nurses claiming that they will gain recognition that they do not currently get but which they deserve. Their scope of practice is based upon their managers’ or supervisors’ perception of their individual aptitude rather than on a credentialist claim. They ‘usurp’ nurses claim to be the healthcare worker with privileged access to patients, saying they have taken over what nursing has considered its core work, while nurses abandon it for largely administrative roles. We conclude that the participants are the not unwilling agents of a managerially led project to reshape the workforce that cuts across existing occupational boundaries.
From Substance Use to Homelessness or Vice Versa?
Duncan McVicar, Julie Moschion, Jan C. van Ours
Homelessness is associated with substance use, but whether substance use precedes or follows homelessness is unclear. We investigate the nature of the relationship between homelessness and substance use using data from the unique Australian panel dataset Journeys Home collected in 4 surveys over the period from October 2011 to May 2013. Our data refer to 1325 individuals who were homeless or at risk of becoming homeless. We investigate dynamics in homelessness and substance use over the survey period. We find that the two are closely related: homeless individuals are more likely to be substance users and substance users are more likely to be homeless. These relationships, however, are predominantly driven by observed and unobserved individual characteristics which cause individuals to be both more likely to be homeless and to be substance users. Once we take these personal characteristics into account it seems that homelessness does not affect substance use, although we cannot rule out that alcohol use increases the probability that an individual becomes homeless. These overall relationships also hide some interesting heterogeneity by ‘type’ of homelessness.
Choice and Compassion at the End of Life: A Critical Analysis of Recent English Policy Discourse
Erica Borgstrom and Tony Walter
End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done. Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity. Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries.
How do Living Arrangements and Intergenerational Support Matter for Psychological Health of Elderly Parents? Evidence from Myanmar, Vietnam, and Thailand
Bussarawan Teerawichitchainan, Wiraporn Pothisiri, and Giang Thanh Long
Living arrangements and family support for older persons have become an increasingly important policy concern in developing and rapidly aging Asia. Formulating a sound elderly care policy for the region will benefit from empirically examining how living arrangements, particularly coresidence, and intergenerational exchanges of financial, instrumental, and emotional support are associated with old-age psychological health. This study analyzes data from nationally representative aging surveys in Myanmar, Vietnam, and Thailand for 2011–2012 to offer a comparative perspective from Southeast Asia where various kinship systems coexist. Results suggest that coresidence with a child of culturally preferred gender significantly improves the emotional health of Vietnamese and Thai elders but with different implications. In Vietnam, living with a married son is more beneficial to parents’ psychological wellbeing than living with other children. In Thailand, coresidence regardless of the child’s gender improves old-age psychological wellbeing but living with a daughter brings greater benefits than living only with son. Evidence points to the importance of understanding the dominant kinship system that may shape normative filial expectations and gender role expectations within the family. In Vietnam and Thailand, the positive association holds even after intergenerational support is controlled, suggesting that the value of culturally preferred coresidence goes beyond practical functions. In Myanmar, there are almost no significant differences in psychological wellbeing among elderly across various living arrangements, except between coresidence and network living arrangements. For all settings, we do not find evidence in support of network family arrangements as a complete substitute for coresidence in terms of promoting old-age psychological wellbeing after filial support is controlled. Our study highlights important cultural nuances for theorizing the nature of the relationship between living arrangements and old-age psychological health, and presents the important need for more rigorous investigation of the causal links between these two phenomena in future research.
Does the socioeconomic status (SES) that one’s (ego’s) network members (alters) occupy indicate social resources or social comparison standards in the dynamics of health across culture? Using nationally representative data simultaneously collected from the United States and urban China, this study examines two competing theories—social capital and comparative reference group—in the two societies and compares their different application across the two societies using two cultural explanations, relational dependence and self-evaluation motive. Social capital theory expects absolute accessed SES and the size of higher accessed socioeconomic positions to protect health, and the size of lower accessed socioeconomic positions to harm health. But comparative reference group theory predicts the opposite. Additionally, the relational dependence explanation anticipates social capital theory to be more applicable to urban China and comparative reference group theory to be more applicable to the United States. The self-evaluation motive explanation expects the same pattern across the two societies in the examination of the size of lower accessed socioeconomic positions but the opposite pattern in the analysis of absolute accessed SES and the size of higher accessed socioeconomic positions. This study focuses on depressive symptoms and measures accessed occupational status. Results are consistent with the self-evaluation motive explanation. They support both social capital theory and comparative reference group theory in the United States but only the latter theory in urban China.
In this article, the concept of medical dominance is “unfolded” into four different components: 1) professional autonomy; 2) superiority over other healthcare professions; 3) influence on policy makers; 4) authority with respect to patients. These four components will serve to bring to surface the transformations which the medical profession in Italy is currently undergoing. Special emphasis is placed on the challenges that Italian physicians are facing and the strategies they are adopting to try to maintain their dominant position. Coming to conclusions, Italian physicians seem to retain their supremacy over other healthcare professions, and are particularly adept at controlling the legislative process on healthcare issues. Conversely, Italian physicians are losing their influence on patients (as evidenced by the growing number of allegations of malpractice) and complain that their professional autonomy is diminishing and their work has become far too bureaucratized.
Self-Reported Health and Socio-Economic Inequalities in England, 1996-2009: Repeated National Cross-Sectional Study
Hendramoorthy Maheswaran, Emil Kopek, and Stavros Petrou
Tackling social inequalities in health has been a priority for recent UK governments. We used repeated national cross-sectional data for 155,311 participants (aged ≥16 years) in the Health Survey of England to examine trends in socio-economic inequalities in self-reported health over a recent period of sustained policy focus by successive UK governments aimed at tackling social inequalities in health. Socio-economic related inequalities in self-reported health were estimated using the Registrar General’s occupational classification (1996–2009), and for sensitivity analyses, the National Statistics Socio-Economic Classification (NS-SEC; 2001–2011). Multi-level regression was used to evaluate time trends in General Health Questionnaire (GHQ-12) scores and bad or very bad self-assessed health (SAH), as well as EQ-5D utility scores.
The study found that the probability of reporting GHQ-12 scores ≥4 and ≥ 1 was higher in those from lower social classes, and decreased for all social classes between 1997 and 2009. For SAH, the probability of reporting bad or very bad health remained relatively constant for social class I (professional) [0.028 (95%CI: 0.026, 0.029) in 1996 compared to 0.028 (95%CI: 0.024, 0.032) in 2009], but increased in lower social classes, with the greatest increase observed amongst those in social class V (unskilled manual) [0.089 (95%CI: 0.085, 0.093) in 1996 compared to 0.155 (95%CI: 0.141, 0.168) in 2009]. EQ-5D utility scores were lower for those in lower social classes, but remained comparable across survey years. In sensitivity analyses using the NS-SEC, health outcomes improved from 2001 to 2011, with no evidence of widening socio-economic inequalities. Our findings suggest that socio-economic inequalities have persisted, with evidence of widening for some adverse self-reported health outcomes.
The SPIRIT Action Framework: A Structured Approach to Selecting and Testing Strategies to Increase the Use of Research in Policy
Sally Redman, Tari Turner, Huw Davies, Anna Williamson, Abby Haynes, Sue Brennan, Andrew Milat, Denise O’Connor, Fiona Blyth, Louisa Jorm, and Sally Green
The recent proliferation of strategies designed to increase the use of research in health policy (knowledge exchange) demands better application of contemporary conceptual understandings of how research shapes policy. Predictive models, or action frameworks, are needed to organise existing knowledge and enable a more systematic approach to the selection and testing of intervention strategies. Useful action frameworks need to meet four criteria: have a clearly articulated purpose; be informed by existing knowledge; provide an organising structure to build new knowledge; and be capable of guiding the development and testing of interventions. This paper describes the development of the SPIRIT Action Framework. A literature search and interviews with policy makers identified modifiable factors likely to influence the use of research in policy. An iterative process was used to combine these factors into a pragmatic tool which meets the four criteria. The SPIRIT Action Framework can guide conceptually-informed practical decisions in the selection and testing of interventions to increase the use of research in policy.
The SPIRIT Action Framework hypothesises that a catalyst is required for the use of research, the response to which is determined by the capacity of the organisation to engage with research. Where there is sufficient capacity, a series of research engagement actions might occur that facilitate research use. These hypotheses are being tested in ongoing empirical work.
‘It’s Safer To…’ Parent Consulting and Clinician Antibiotic Prescribing Decisions for Children with Respiratory Tract Infections: An Analysis Across Four Qualitative Studies
Christie Cabral, Patricia J. Lucas, Jenny Ingram, Alastair D. Hay, and Jeremy Horwood
This paper reports a cross-study analysis of four studies, aiming to understand the drivers of parental consulting and clinician prescribing behaviour when children under 12 years consult primary care with acute respiratory tract infections (RTI). Qualitative data were obtained from three primary studies and one systematic review. Purposeful samples were obtained for (i) a focus group study of parents’ information needs and help seeking; (ii) an interview study of parents’ experiences of primary health care (60 parents in total); and (iii) an interview study of clinicians’ experiences of RTI consultations for children (28 clinicians). The systematic review synthesised parent and clinician views of prescribing for children with acute illness. Reoccurring themes and common patterns across the whole data set were noted. Through an iterative approach involving re-examination of the primary data, translation of common themes across all the studies and re-organisation of these themes into conceptual groups, four overarching themes were identified. These were: the perceived vulnerability of children; seeking safety in the face of uncertainty; seeking safety from social disapproval; and experience and perception of safety. The social construction of children as vulnerable and normative beliefs about the roles of parents and clinicians were reflected in parents’ and clinicians’ beliefs and decision making when a child had an RTI. Consulting and prescribing antibiotics were both perceived as the safer course of action. Therefore perception of a threat or uncertainty about that threat tended to lead to parental consulting and clinician antibiotic prescribing. Clinician and parent experience could influence the perception of safety in either direction, depending on whether previous action had resulted in perceived increases or decreases in safety. Future interventions aimed at reducing unnecessary consulting or antibiotic prescribing need to consider how to make the desired action fit with social norms and feel safer for parents and clinicians.
Associated with overweight, obesity and chronic diseases, the nutrition transition process reveals important socioeconomic issues in Mexico. Using panel data from the Mexican Family Life Survey, the purpose of the study is to estimate the causal effect of household socioeconomic status (SES) on nutritional outcomes among urban adults. We divide the analysis into two steps. First, using a mixed clustering procedure, we distinguish four socioeconomic classes based on income, educational and occupational dimensions: (i) a poor class; (ii) a lower–middle class; (iii) an upper–middle class; (iv) a rich class. Second, using an econometric framework adapted to our study (the Hausman-Taylor estimator), we measure the impact of belonging to these socioeconomic groups on individual anthropometric indicators, based on the body-mass index (BMI) and the waist-to-height ratio (WHtR). Our results make several contributions: (i) we show that a new middle class, rising out of poverty, is the most exposed to the risks of adiposity; (ii) as individuals from the upper class seem to be fatter than individuals from the upper–middle class, we can reject the assumption of an inverted U-shaped relationship between socioeconomic and anthropometric status as commonly suggested in emerging economies; (iii) the influence of SES on central adiposity appears to be particularly strong for men.
Simulated patient encounters, in which a trained layperson role-plays a patient, have become increasingly important in medical education. One such type is the gynecological teaching associate (GTA), who teaches medical students how to perform the pelvic examination using her own body. This paper considers the role that simulation like the GTA session plays in medical students’ professional socialization. Drawn from interviews and archival sources gathered from medical students, medical faculty, and GTAs, this paper explores the tensions between artificiality and authenticity in order to understand how, through pedagogical practice, medical students come to embody medical culture through simulation. This paper uses the theoretical framework of the medical habitus to understand the role of emotion in medical student socialization. It argues that simulation is an example of affective practice: any rehearsal of techniques or styles of expressing, experiencing, or managing emotion that reshape the body’s capacity to feel.
Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004
Javier M. Rodriguez, Arline T. Geronimus, John Bound, and Danny Dorling
Excess mortality in marginalized populations could be both a cause and an effect of political processes. We estimate the impact of mortality differentials between blacks and whites from 1970 to 2004 on the racial composition of the electorate in the US general election of 2004 and in close statewide elections during the study period. We analyze 73 million US deaths from the Multiple Cause of Death files to calculate: (1) Total excess deaths among blacks between 1970 and 2004, (2) total hypothetical survivors to 2004, (3) the probability that survivors would have turned out to vote in 2004, (4) total black votes lost in 2004, and (5) total black votes lost by each presidential candidate. We estimate 2.7 million excess black deaths between 1970 and 2004. Of those, 1.9 million would have survived until 2004, of which over 1.7 million would have been of voting-age. We estimate that 1 million black votes were lost in 2004; of these, 900,000 votes were lost by the defeated Democratic presidential nominee. We find that many close state-level elections over the study period would likely have had different outcomes if voting age blacks had the mortality profiles of whites. US black voting rights are also eroded through felony disenfranchisement laws and other measures that dampen the voice of the US black electorate. Systematic disenfranchisement by population group yields an electorate that is unrepresentative of the full interests of the citizenry and affects the chance that elected officials have mandates to eliminate health inequality.
Exploring the Use of Social Network Analysis to Measure Communication Between Disease Programme and District Managers at Sub-National Level in South Africa
Mary Kawonga, Duane Blaauw, and Sharon Fonn
With increasing interest in maximising synergies between disease control programmes (DCP) and general health services (GHS), methods are needed to measure interactions between DCP and GHS actors. In South Africa, administrative integration reforms make GHS managers at decentralised level (district managers) responsible for the oversight of DCP operations within districts, with DCP managers (programme managers) providing specialist support. The reforms necessitate interdependence, but these actors work together ineffectively. Communication is crucial for joint working, but no research to assess communication between these actors has been done. This study explores the use of social network analysis (SNA) to measure the extent to which programme and district managers in South Africa communicate, using HIV monitoring and evaluation (M&E) as an exemplar. Data were collected from fifty one managers in two provinces during 2010–2011, to measure: a) one-on-one task-related communication – talking about the collation (verification, reporting) and use of HIV data for monitoring HIV interventions; and b) group communication through co-participating in management committees where HIV data are used for monitoring HIV interventions in districts. SNA measures were computed to describe actor centrality, network density (cohesion), and communication within and between respective manager groups. Block modelling was applied to identify management committees that connect respective manager groups. Results show HIV programme managers located at higher level communicated largely amongst themselves as a group (homophily), seldom talked to the district managers to whom they are supposed to provide specialist HIV M&E support, and rarely participated with them in management committees. This research demonstrates the utility of SNA as a tool for measuring the extent of communication between DCP and GHS actors at sub-national level. Actions are needed to bridge observed communication gaps in order to promote collaborative monitoring of HIV programme interventions within districts.
Doubt, Defiance, and Identity: Understanding Resistance to Male Circumcision for HIV Prevention in Malawi
Justin O. Parkhurst, David Chilongozi, and Eleanor Hutchinson
Global policy recommendations to scale up of male circumcision (MC) for HIV prevention tend to frame the procedure as a simple and efficacious public health intervention. However, there has been variable uptake of MC in countries with significant HIV epidemics. Kenya, for example, has embraced MC and has been dubbed a ‘leader’ by the global health community, while Malawi has been branded a ‘laggard’ in its slow adoption of a national programme, with a strong political discourse of resistance forming around MC. Regardless of any epidemiological or technical evidence, the uptake of international recommendations will be shaped by how a policy, and the specific artefacts that constitute that policy, intersect with local concerns. MC holds particular significance within many ethnic and religious groups, serving as an important rite of passage, but also designating otherness or enabling the identification of the social and political self. Understanding how the artefact of MC intersects with local social, economic, and political contexts, is therefore essential to understand the acceptance or resistance of global policy recommendations. In this paper we present an in-depth analysis of Malawi’s political resistance to MC, finding that ethnic and religious divisions dominating recent political movements aligned well with differing circumcision practices. Political resistance was further found to manifest through two key narratives: a ‘narrative of defiance’ around the need to resist donor manipulation, and a ‘narrative of doubt’ which seized on a piece of epidemiological evidence to refute global claims of efficacy. Further, we found that discussions over MC served as an additional arena through which ethnic identities and claims to power could themselves be negotiated, and therefore used to support claims of political legitimacy.
Neighbourhood Vitality and Physical Activity Among the Elderly: The Role of Walkable Environments on Active Ageing in Barcelona, Spain
Orion Marquet and Carme Miralles-Guasch
This study investigated whether neighbourhood vitality and walkability were associated with active ageing of the elderly. Immobility, activity engagement and physical activity were explored in relation with age, gender and walkability of the built environment. Number of trips per day and minutes spent on walking by the elderly were extracted from a broad travel survey with more than 12,000 CATI interviews and were compared across vital and non-vital urban environments. Results highlight the importance of vital environments for elderly active mobility as subpopulations residing in highly walkable neighbourhoods undertook more trips and spent more minutes walking than their counterparts. The results also suggest that the built environment has different effects in terms of gender, as elderly men were more susceptible to urban vitality than elderly women.
Migrants and ethnic minorities are under-represented in spaces created to give citizens voice in healthcare governance. Excluding minority groups from the health participatory sphere may weaken the transformative potential of public participation, (re)producing health inequities. Yet few studies have focused on what enables involvement of marginalised groups in participatory spaces. This paper addresses this issue, using the Participation Chain Model (PCM) as a conceptual framework, and drawing on a case study of user participation in a Dutch mental health advocacy project involving Cape Verdean migrants. Data collection entailed observation, documentary evidence and interviews with Cape Verdeans affected by psychosocial problems (n = 20) and institutional stakeholders (n = 30). We offer practice, policy and theoretical contributions. Practically, we highlight the importance of a proactive approach providing minorities and other marginalised groups with opportunities and incentives that attract, retain and enable them to build and release capacity through involvement. In policy terms, we suggest that both health authorities and civil society organisations have a role in creating ‘hybrid’ spaces that promote the substantive inclusion of marginalised groups in healthcare decision-making. Theoretically, we highlight shortcomings of PCM and its conceptualisation of users’ resources, suggesting adaptations to improve its conceptual and practical utility.
Increased Incidence of Coronary Heart Disease Associated with ‘Double Burden’ in a Cohort of Italian Women
Fabrizio D’Ovidio, Angelo d’Errico, Cecilia Scarinzi, and Guiseppe Costa
Objective of this study was to assess the risk of coronary heart disease (CHD) associated with the combination of employment status and child care among women of working age, also examining the sex of the offspring. Only two previous studies investigated the effect of double burden on CHD, observing an increased risk among employed women with high domestic burden or providing child care, although the relative risks were marginally or not significant. The study population was composed of all women 25–50 years old at 2001 census, living in Turin in families composed only by individuals or couples, with or without children (N = 109,358). Subjects were followed up during 2002–2010 for CHD incidence and mortality through record-linkage of the cohort with the local archives of mortality and hospital admissions. CHD risk was estimated by multivariate Poisson regression models. Among employed women, CHD risk increased significantly by 29% for each child in the household (IRR = 1.29) and by 39% for each son (IRR = 1.39), whereas no association with the presence of children was found among non-employed women or among employed women with daughters. When categorized, the presence of two or more sons significantly increased CHD risk among employed women (IRR = 2.23), compared to those without children. The study found a significant increase in CHD risk associated with the presence of two or more sons in the household, but not daughters, among employed women. This is a new finding, which should be confirmed in other studies, conducted also in countries where the division of domestic duties between males and females is more balanced, such as the European Nordic countries.
Gender, Coping Strategies, Homelessness Stressors, and Income Generation Among Homeless Young Adults in Three Cities
Kristin M. Ferguson, Kimberly Bender, Sanna J. Thompson
This study examined gender differences among homeless young adults’ coping strategies and homelessness stressors as they relate to legal (e.g., full-time employment, selling personal possessions, selling blood/plasma) and illegal economic activity (e.g., selling drugs, theft, prostitution). A sample of 601 homeless young adults was recruited from 3 cities (Los Angeles, CA [n = 200], Austin, TX [n = 200], and Denver, CO [n = 201]) to participate in semi-structured interviews from March 2010 to July 2011. Risk and resilience correlates of legal and illegal economic activity were analyzed using six Ordinary Least Squares regression models with the full sample and with the female and male sub-samples. In the full sample, three variables (i.e., avoidant coping, problem-focused coping, and mania) were associated with legal income generation whereas eight variables (i.e., social coping, age, arrest history, transience, peer substance use, antisocial personality disorder [ASPD], substance use disorder [SUD], and major depressive episode [MDE]) were associated with illegal economic activity. In the female sub-sample, three variables (i.e., problem-focused coping, race/ethnicity, and transience) were correlated with legal income generation whereas six variables (i.e., problem-focused coping, social coping, age, arrest history, peer substance use, and ASPD) were correlated with illegal economic activity. Among males, the model depicting legal income generation was not significant yet seven variables (i.e., social coping, age, transience, peer substance use, ASPD, SUD, and MDE) were associated with illegal economic activity. Understanding gender differences in coping strategies and economic activity might help customize interventions aimed at safe and legal income generation for this population.
The “rightness” of a technology for completing a particular task is negotiated by medical professionals, patients, state institutions, manufacturing companies, and non-governmental organizations. This paper shows how certain technologies may challenge the meaning of the “job” they are designed to accomplish. Manual vacuum aspiration (MVA) is a syringe device for uterine evacuation that can be used to treat complications of incomplete abortion, known as post-abortion care (PAC), or to terminate pregnancy. I explore how negotiations over the rightness of MVA as well as PAC unfold at the intersection of national and global reproductive politics during the daily treatment of abortion complications at three hospitals in Senegal, where PAC is permitted but induced abortion is legally prohibited. Although state health authorities have championed MVA as the “preferred” PAC technology, the primary donor for PAC, the United States Agency for International Development, does not support the purchase of abortifacient technologies. I conducted an ethnography of Senegal’s PAC program between 2010 and 2011. Data collection methods included interviews with 49 health professionals, observation of PAC treatment and review of abortion records at three hospitals, and a review of transnational literature on MVA and PAC. While MVA was the most frequently employed form of uterine evacuation in hospitals, concerns about off-label MVA practices contributed to the persistence of less effective methods such as dilation and curettage (D&C) and digital curettage. Anxieties about MVA’s capacity to induce abortion have constrained its integration into routine obstetric care. This capacity also raises questions about what the “job,” PAC, represents in Senegalese hospitals. The prioritization of MVA’s security over women’s access to the preferred technology reinforces gendered inequalities in health care.
Educational Trajectories After Childhood Cancer: When Illness Experience Matters
A. Duman, I. Cailbault, C. Perrey, O. Oberlin, F. De Vathaire, and P. Amiel
With the increase in survival from childhood cancer, research has increasingly focused on the educational and professional achievements of childhood cancer survivors. Yet, if large-scale studies provide an acute description of the current situation of childhood cancer survivors, little is known about their trajectories and the social processes shaping these trajectories. Using a qualitative methodology, drawing from a life course perspective, this study sought to describe the role of childhood cancer and its side effects in educational trajectories, as perceived by the participants. We investigated related processes of social adjustment to cancer, that is to say, choices or decisions that survivors related to the illness in the making of their career plans. Eighty long-term French childhood cancer survivors participating in the Euro2K longitudinal study were interviewed through in-depth, face-to-face interviews undertaken in 2011–2012. There were various types of impact described by respondents of the diagnosis of cancer on their trajectories. These varied according to gender. In women, childhood cancer tended to result in poor educational achievement, or in steering the individual towards a health care or child care occupation. This was justified by a desire to return the support that had been offered to them as patients. In men, however, childhood cancer led to a shift in career plans, because of physical sequelae, or because of concerns about their future health. Paradoxically, this limitation had a positive impact in their occupational achievement, as most of these men disregarded blue-collar jobs and chose more qualified white-collar occupations. Overall, findings suggest that childhood cancer influenced educational trajectories and, thus, socioeconomic status in adulthood, through mechanisms embedded in gender norms. These mechanisms could explain gender inequalities in educational achievement after childhood cancer reported in large-scale cohort studies.
Access to Critical Medicines: When are Compulsory Licenses Effective in Price Negotiations?
Shyama V. Ramani and Eduardo Urias
Governments of developing countries can be in a vulnerable position with respect to patent protected drugs supplied by foreign firms, if the technology cannot be licensed or independently developed by local firms. In such instances, one possible solution is to negotiate for a price-drop with the patent holder in lieu of issuing a compulsory license. The present paper develops a game theoretic model of such bargaining and shows that while compulsory licenses do not occur under complete information, they can be issued under incomplete information. The model is tested against real episodes of compulsory licenses to derive policy insight.
Power Relations and Contrasting Conceptions of Evidence in Patient-Involvement Processes Used to Inform Health Funding Decisions in Australia
Edilene Lopes, Drew Carter, and Jackie Street
We collected and analysed views of key stakeholders on the processes used to involve patient organisations in health care funding decision making in Australia. We conducted 12 semi-structured interviews with patient organisation representatives and members of Advisory Committees that provide advice to the Australian Department of Health and employ Health Technology Assessment (HTA) as an evaluation framework. Using two theoretical frameworks, we analysed structural and contextual elements pertaining to the involvement processes. The findings reported in this article relate to interviewees’ perspectives on contextual elements, analysed using a Foucauldian lens. These elements include: the perspectives of marginalised voices; the diversity of views on what ought to be considered valid evidence in a HTA setting; and the relationships between stakeholders, along with how these relationships impact on involvement processes and the outcomes of those processes. The findings demonstrate that the involvement processes currently used are deemed inadequate by both patient organisation representatives and Advisory Committee members, but for different reasons connected to how different stakeholders conceptualise evidence. Advisory Committee members viewed evidence as encompassing clinical outcomes and patient preferences, whereas patient organisation representatives tended to view evidence as encompassing aspects not directly related to a disease entity, such as the social and emotional aspects of patients’ experiences in living with illness. Patient organisation representatives reported interacting with other stakeholders (especially industry) to increase the influence of their conception of evidence on decision making. The use of this strategy by interviewees illustrates how power struggles occur in government decision-making processes which involve both medical expertise and patients’ accounts. Such struggles, and the power differentials they reflect, need to be considered by those responsible for designing and implementing meaningful public- and patient-involvement processes.
Coping with Breast Cancer and Relapse: Stability of Coping and Long-Term Outcomes in an Observational Study Over 10 Years
Siegfried Geyer, Heike Koch-Giesselmann, and Dorothee Noeres
Many studies dealing with relationships between coping and breast cancer were based on a single measurement of coping behaviour. Assessments were taking place soon after surgery of primary breast cancer, and effects on long-term outcomes were considered. In our study it was examined whether coping behaviours are stable over time and whether they were associated with breast cancer recurrence.
The analyses were based on a long-term study with initially 254 patients with three interviews and an outcome assessment within a total study period of 10 years. Data were collected by means of qualitative interviews and standardized questionnaires. Ways of coping in terms of helplessness, denial, mastery, and hope/optimism were classified by interviewer-based ratings within the framework of a standardized rating procedure. The reliability of rating standards was assured by continuous training and by estimating inter-rater agreements. Outcome measures were drawn from registries and patients’ files. Coping behaviours over three interviews within six years after surgery turned out to be highly variable, and the respective correlations were low. For none of the four ways of coping associations with recurrence emerged. Coping in response to breast cancer was not stable over time, so we may conclude that the results of one measurement assessed early in the disease course should not be considered as constant over longer time periods. Coping behaviours were unrelated with recurrence, a finding that might be relieving from a patient perspective.
Longitudinal Association of Neighborhood Variables with Body Mass Index in Dutch School-Age Children: The KOALA Birth Cohort Study
Swantje C. Schmidt, Ester F.C. Sleddens, Sanne I. de Vries, Jessica Gubbels, and Carel Thijs
Changes in the neighborhood environment may explain part of the rapid increase in childhood overweight and obesity during the last decades. To date few theory-driven rather than data-driven studies have explored longitudinal associations between multiple neighborhood characteristics and child body weight development. We aimed to assess the relationship between physical, social and perceived safety related characteristics of the neighborhood and Body Mass Index (BMI) development in children during early school age, using a longitudinal design. We included an examination of moderating and confounding factors based on a conceptual model adapted from the EnRG framework (Environmental Research framework for weight Gain prevention) and empirical research. Analyses included 1887 children from the KOALA Birth Cohort Study followed from baseline age 4–5 years until 8–9 years. For children age 4–5 years, parents completed a questionnaire measuring characteristics of the neighborhood. Reliability and factor analyses were used to identify constructs for neighborhood characteristics. Linear regression analysis was performed to assess the relationship between neighborhood constructs and BMI z-scores cross-sectionally at age 4–5 years and longitudinally using Generalized Estimating Equations with BMI z-scores over 5 repeated measurements until age 8–9 years. Fourteen constructs were identified and grouped in three domains including perceived physical, social, or safety related characteristics of the neighborhood. Cross-sectionally, a lower BMI z-score was associated with higher perceived physical attractiveness of the neighborhood environment (standardized regression coefficient (β) −0.078, 95% CI −0.123 to −0.034) and a higher level of social capital (β −0.142, −0.264 to −0.019). Longitudinally, similar associations were observed with potentially even stronger regression coefficients. This study suggests that BMI in children is mainly related to the modifiable physical and social environment of the conceptual model and not related to safety as perceived by parents.
Rationalising Prescribing: Evidence, Marketing and Practice-Relevant Knowledge
Sarah Wadmann and Lia E. Bang
Initiatives in the name of ‘rational pharmacotherapy’ have been launched to alter what is seen as ‘inappropriate’ prescribing practices of physicians. Based on observations and interviews with 20 general practitioners (GPs) in 2009–2011, we explored how attempts to rationalise prescribing interact with chronic care management in Denmark. We demonstrate how attempts to rationalise prescribing by informing GPs about drug effects, adverse effects and price do not satisfy GPs’ knowledge needs. We argue that, for GPs, ‘rational’ prescribing cannot be understood in separation from the processes that enable patients to use medication. Therefore, GPs do much more to obtain knowledge about medications than seek advice on ‘rational pharmacotherapy’. For instance, GPs also seek opportunities to acquaint themselves with the material objects of medication and medical devices. We conceptualise the knowledge needs of GPs as a need for practice-relevant knowledge and argue that industry sales representatives are granted opportunity to access general practice because they understand this need of GPs.
Who Benefits from Removing User Fees for Facility-Based Delivery Services? Evidence on Socioeconomic Differences from Ghana, Senegal and Sierra Leone
Britt McKinnon, Sam Harper, and Jay S. Kaufman
Coverage of skilled delivery care has been increasing across most low-income countries; however, it remains far from universal and is very unequally distributed according to socioeconomic position. In an effort to increase coverage of skilled delivery care and reduce socioeconomic inequalities, governments of several countries in sub-Saharan Africa have recently adopted policies that remove user fees for facility-based delivery services. There is little rigorous evidence of the impact of these policies and few studies have examined effects on socioeconomic inequalities. This study investigates the impact of recent delivery fee exemption policies in Ghana, Senegal, and Sierra Leone on socioeconomic differences in the use of facility-based delivery services. Using Demographic and Health Survey data from nine sub-Saharan African countries, we evaluated the user fee policy changes using a difference-in-differences approach that accounts for underlying common secular trends and time invariant differences among countries, and allows for differential effects of the policy by socioeconomic position. Removing user fees was consistent with meaningful increases in facility deliveries across all categories of household wealth and maternal education. We found little evidence of differential effects of removing user fees across quartiles of household wealth, with increases of 5.4 facility deliveries per hundred live births (95% CI: 2.1, 8.8) among women in the poorest quartile and 6.8 per hundred live births (95% CI: 4.0, 9.7) for women in the richest quartile. However, our results suggest that educated women benefited more from removing user fees compared to women with no education. For women with at least some secondary education, the estimated effect was 8.6 facility deliveries per hundred live births (95% CI: 5.4, 11.9), but only 4.6 per hundred live births (95% CI: 2.2, 7.0) for women with no education (heterogeneity p-value = 0.04). Thus, while removing fees at the point of service increased facility deliveries across the socioeconomic gradient, it did not reduce inequalities defined by household wealth and may have contributed to a widening of educational inequalities. These findings emphasize the need for concerted efforts to address financial and other barriers that contribute to large and persistent socioeconomic inequalities in delivery care.
Water Systems, Sanitation, and Public Health Risks in Remote Communities: Inuit Resident Perspectives from the Canadian Arctic
Kiley Daley, Heather Castleden, Rob Jamieson, Chris Furgal, and Lorna Ell
Safe drinking water and wastewater sanitation are universally recognized as critical components of public health. It is well documented that a lack of access to these basic services results in millions of preventable deaths each year among vulnerable populations. Water and wastewater technologies and management practices are frequently tailored to local environmental conditions. Also important, but often overlooked in water management planning, are the social, cultural and economic contexts in which services are provided. The purpose of this qualitative case study was to identify and understand residents’ perceptions of the functionality of current water and wastewater sanitation systems in one vulnerable context, that of a remote Arctic Aboriginal community (Coral Harbour, Nunavut), and to identify potential future water related health risks. Semi-structured interviews were conducted with 28 Inuit residents and 9 key informants in 2011 and 2012. Findings indicate that the population’s rapid transition from a semi-nomadic hunting and gathering lifestyle to permanent settlements with municipally provided utilities is influencing present-day water usage patterns, public health perceptions, and the level of priority decision-makers place on water and wastewater management issues. Simultaneously environmental, social and cultural conditions conducive to increased human exposure to waterborne health risks were also found to exist and may be increasing in the settlements. While water and wastewater system design decisions are often based on best practices proven suitable in similar environmental conditions, this study reinforces the argument for inclusion of social, cultural, and economic variables in such decisions, particularly in remote and economically challenged contexts in Canada or elsewhere around the world. The results also indicate that the addition of qualitative data about water and wastewater systems users’ behaviours to technical knowledge of systems and operations can enhance the understanding of human–water interactions and be valuable in risk assessments and intervention development.
Moderators, Mediators, and Bidirectional Relationships in the International Classification of Functioning, Disability and Health (ICF) Framework: An Empirical Investigation Using a Longitudinal Design and Structural Equation Modeling (SEM)
Alexandra Rouquette, Elizabeth M. Badley, Bruno Falissard, Timothée Dub, Alain Leplege, and Joël Coste
The International Classification of Functioning, Disability and Health (ICF) published in 2001 describes the consequences of health conditions with three components of impairments in body structures or functions, activity limitations and participation restrictions. Two of the new features of the conceptual model were the possibility of feedback effects between each ICF component and the introduction of contextual factors conceptualized as moderators of the relationship between the components. The aim of this longitudinal study is to provide empirical evidence of these two kinds of effect. Structural equation modeling was used to analyze data from a French population–based cohort of 548 patients with knee osteoarthritis recruited between April 2007 and March 2009 and followed for three years. Indicators of the body structure and function, activity and participation components of the ICF were derived from self-administered standardized instruments. The measurement model revealed four separate factors for body structures impairments, body functions impairments, activity limitations and participation restrictions. The classic sequence from body impairments to participation restrictions through activity limitations was found at each assessment time. Longitudinal study of the ICF component relationships showed a feedback pathway indicating that the level of participation restrictions at baseline was predictive of activity limitations three years later. Finally, the moderating role of personal (age, sex, mental health, etc.) and environmental factors (family relationships, mobility device use, etc.) was investigated. Three contextual factors (sex, family relationships and walking stick use) were found to be moderators for the relationship between the body impairments and the activity limitations components. Mental health was found to be a mediating factor of the effect of activity limitations on participation restrictions.
Tracing Shadows: How Gendered Power Relations Shape the Impacts of Maternal Death on Living Children in Sub Saharan Africa
Alicia Ely Yamin, Junior Bazile, Lucia Knight, Mitike Molla, Emily Maistrellis, and Jennifer Leaning
Driven by the need to better understand the full and intergenerational toll of maternal mortality (MM), a mixed-methods study was conducted in four countries in sub-Saharan Africa to investigate the impacts of maternal death on families and children. The present analysis identifies gender as a fundamental driver not only of maternal, but also child health, through manifestations of gender inequity in household decision making, labor and caregiving, and social norms dictating the status of women. Focus group discussions were conducted with community members, and in depth qualitative interviews with key-informants and stakeholders, in Tanzania, Ethiopia, Malawi, and South Africa between April 2012 and October 2013. Findings highlight that socially constructed gender roles, which define mothers as caregivers and fathers as wage earners, and which limit women’s agency regarding childcare decisions, among other things, create considerable gaps when it comes to meeting child nutrition, education, and health care needs following a maternal death. Additionally, our findings show that maternal deaths have differential effects on boy and girl children, and exacerbate specific risks for girl children, including early marriage, early pregnancy, and school drop-out. To combat both MM, and to mitigate impacts on children, investment in health services interventions should be complemented by broader interventions regarding social protection, as well as aimed at shifting social norms and opportunity structures regarding gendered divisions of labor and power at household, community, and society levels.
Approaches to the organization and conduct of cancer research changed dramatically throughout the 20th century. Despite marked differences between the epidemiological approaches of the first half of the century and molecular techniques that gained dominance in the 1980s, prominent 20th-century researchers investigating the link between sexual activity and anogenital cancers continuously invoked the same 1842 treatise by Italian surgeon Domenico Rigoni-Stern, who is said to originate the problem of establishing a causal link between sex and cancer. In this article, I investigate 20th-century references to Rigoni-Stern as a case of a broader phenomenon: scientists situating their work through narratives of venerated ancestors, or originators. By explaining shifting versions of originator narratives in light of their authors’ cultural context and research practices, we can reimagine as meaningful cultural symbols the references that previous scholars have treated as specious rhetorical maneuvers. In this case, references to Rigoni-Stern provide an interpretive anchor for American scientists to construct continuity between their work and a diverse historical legacy of cancer research.
Working for the Public Health: Politics, Localism, and Epistemologies of Practice
Gemma Phillips and Judith Green
The recent move of public health back to English local government has reignited debates about the role of a medicalised public health profession. The explicit policy rationale for the move was that local government is the arena in which the social determinants of health can be addressed, and that public health specialists could provide neutral evidence to support action on these. However, if a discourse of ‘evidence-based’ policy is in principle (if not practice) relatively unproblematic within the health arena, within the more overtly politicised local government space, rather different policy imperatives come to the fore. Responding to calls for research on evidence in practice, this article draws on ethnographic data of local authorities in the first year of the reorganised public health function. Focusing on alcohol policy, we explore how decisions that affect public health are rationalised and enacted through discourses of localism, empiricism and holism. These frame policy outcomes as inevitably plural and contingent: a framing which sits uneasily with normative discourses of evidence-based policy. We argue that locating public health in local government necessitates a refocusing of how evidence for public health is conceptualised, to incorporate multiple, and political, understandings of health and wellbeing.
Re/creating Entrepreneurs of the Self: Discourses of Worker and Employee ‘Value’ and Current Vocational Rehabilitation Practices
Joanna Fadyl, Kathryn McPherson, and David Nicholls
Vocational rehabilitation for people experiencing work disability is a social practice often situated within health services, but the social and political drivers and effects of this practice are rarely critically analysed in health research or policy. In this study we used a Foucauldian theoretical perspective to analyse the ways in which current vocational rehabilitation practices in New Zealand re/produce notions of worker and employee ‘value’, and how different approaches to vocational rehabilitation deploy current discourses about value. We also consider the subject positions produced through these different approaches and the identities and actions they make possible for people experiencing work disability. The analysis showed that notions about the importance of worker and employee value in a job market are pervasive in vocational rehabilitation, and reflect wider societal discourses. However, the deployment of those discourses in different approaches to vocational rehabilitation practice are diverse, producing different opportunities and constraints for people experiencing disability. We argue that an examination of these various opportunities and constraints at the level of practice approaches is important, as considerable time and resources are allocated to developing solutions to help those who do not thrive in the current systems, yet we rarely critique the premises on which the systems are based.
This study is an attempt to describe an interactional strategy that psychiatrists use in making decisions for treatment in ongoing outpatient psychiatric consultations in Japan. Using conversation analysis (CA), we compare sequential environments where psychiatrists use two turn designs for proposing a treatment: the inclusive ‘we’ form (for example ‘let’s’ and ‘how about’) and the declarative evaluation (for example, ‘it might be better’). The inclusive ‘we’ form is used to create the moment for decision when the sequential environment is ready for decision-making. The declarative evaluation is used to propose a treatment cautiously when the sequential environment is not yet ready for decision-making. Taken together, psychiatrists fit the turn design of a proposal to its sequential environment in such a way as to display their attention to the patients’ perspectives. In conclusion, we argue that our finding provides further evidence for the claim made by a growing body of CA research that, unlike the traditional sociological understanding of doctor–patient interaction, doctors do not simply impose their perspectives upon the patients but steer medical encounters to their preferred direction by orienting to the patients’ perspectives.
Pastoral Power and Gynaecological Examinations: A Foucauldian Critique of Clinician Accounts of Patient-Centred Consent
Catherine Cook and Margaret Brunton
Invasive non-sedated clinical procedures such as gynaecological examinations are normalised; however, there is limited research highlighting the relational and technical skills required for clinicians to ensure patients’ continued consent. A considerable body of research emphasises that women dislike examinations, leading to their non-compliance or a delayed follow up for gynaecological and sexual health problems. However, medical research focuses on ‘problem’ women; the role of clinicians receives limited appraisal. This article draws on interviews with sexual health clinicians in New Zealand, from metropolitan and provincial locations. The gynaecological care of women in New Zealand attained international notoriety with the 1988 publication of Judge Cartwright’s inquiry into ethical shortcomings in cervical cancer research at the National Women’s Hospital. Judge Cartwright’s recommendations included patient-centred care in order to ensure informed consent had been received for clinical procedures and research participation. This article’s critical analysis is that, although clinicians’ language draws on humanistic notions of patient-centredness, Foucault’s notion of secularised pastoral power enables a more nuanced appreciation of the ethical work undertaken by clinicians when carrying out speculum examinations. The analysis highlights both the web of power relations present during examination practices and the strategies clinicians use to negotiate women’s continued consent; which is significant because consent is usually conceptualised as an event, rather than an unfolding, unstable process.
Engineering Behaviour Change in an Epidemic: The Epistemology of NIH-Funded HIV Prevention Science
Adam Green and Kat Kolar
Social scientific and public health literature on National Institutes of Health-funded HIV behavioural prevention science often assumes that this body of work has a strong biomedical epistemological orientation. We explore this assumption by conducting a systematic content analysis of all NIH-funded HIV behavioural prevention grants for men who have sex with men between 1989 and 2012. We find that while intervention research strongly favours a biomedical orientation, research into the antecedents of HIV risk practices favours a sociological, interpretive and structural orientation. Thus, with respect to NIH-funded HIV prevention science, there exists a major disjunct in the guiding epistemological orientations of how scientists understand HIV risk, on the one hand, and how they engineer behaviour change in behavioural interventions, on the other. Building on the extant literature, we suggest that the cause of this disjunct is probably attributable not to an NIH-wide positivist orientation, but to the specific standards of evidence used to adjudicate HIV intervention grant awards, including randomised controlled trials and other quantitative measures of intervention efficacy.
Transplantation as an Abstract Good: Practising Deliberate Ignorance in Deceased Organ Donation in Denmark
Klaus Hoeyer, Anja M.B. Jensen, and Maria Olejaz
This article investigates valuations of organ transfers that are currently seen as legitimising increasingly aggressive procurement methods in Denmark. Based on interviews with registered donors and the intensive care unit staff responsible for managing organ donor patients we identify three types of valuation: the needs of recipients, respect for donors’ autonomy and support of donors’ relatives in their grieving process. Sometimes these modes of valuation conflict with each other, and we show how our informants then respond with a form of deliberate ignorance. We suggest that deliberate ignorance has a more general salience in the organ transplant field by way of facilitating a perception of organ transplantation as an abstract moral good rather than a specific good for specific people. Furthermore, we suggest that multiple forms of ignorance sustain each other: a desire for ignorance with respect to the prioritisation of recipients sustains pressure for more organs; this pressure necessitates more aggressive measures in organ procurement and these measures increase the need for ignorance in relation to the actual procedures as well as the actual recipients. These attempts to avoid knowledge are in remarkable contrast to the otherwise widespread policy emphasis on education and information in this medical domain.
Why do Women Seek Ultrasound Scans from Commercial Providers During Pregnancy?
Julie Roberts, Frances E. Griffiths, Alice Verran, and Catherine Ayre
The commercial availability of ultrasound scans for pregnant women has been controversial yet little is known about why women make use of such services. This article reports on semi-structured interviews with women in the UK who have booked a commercial scan, focusing on the reasons women gave for booking commercially provided ultrasound during a low-risk pregnancy. Participants’ reasons for booking a scan are presented in five categories: finding out the sex of the foetus; reassurance; seeing the baby; acquiring keepsakes and facilitating bonding. Our analysis demonstrates that women’s reasons for booking commercial scans are often multiple and are shaped by experiences of antenatal care as well as powerful cultural discourses related to ‘good’ parenting and the use of technology in pregnancy. Sociological and public debate about the availability of commercial ultrasound and its social and personal impacts should consider the wider sociocultural context that structures women’s choices to make use of such services.
Taboo and the Different Death? Perceptions of Those Bereaved by Suicide or Other Traumatic Death
Alison Chapple, Sue Ziebland, and Keith Hawton
Views differ on how far the subject of death has ever been taboo in Western Society. Walter (1991) criticised the way the ‘taboo thesis’ has been presented, arguing that it has often been ‘grossly overdrawn and lacking in subtlety’. Research suggests that suicide and other traumatic death may be particularly difficult for people to talk about or even acknowledge. We interviewed 80 people bereaved due to suicide, or other traumatic death and used interpretative thematic analysis to consider whether the ‘death taboo’ is evident in these bereavement narratives. People referred to suicide as a different, even stigmatised, death but we also found that those bereaved through other traumatic death felt that their reactions had to be contained and relatively silent. The exception was those bereaved through terrorism or train crash, who were encouraged to grieve openly and angrily: reactions to deaths which are seen as ‘private troubles’ differ from reactions to deaths which are seen as ‘public issues’. Using a symbolic interactionist approach we conclude that the shock and suddenness of the death is tied up both with the circumstances of the death (suicide, murder, accident, terrorism) and the attendant consequences for the social acceptance of public displays of mourning.
Taking Care of Themselves: How Long-Term Injection Drug Users Remain HIV and Hepatitis C Free
Peter Meylakhs, Samuel R. Friedman, Pedro Mateu-Gelabert, Milagros Sandoval, and Nastia Meylakhs
Though prevalence of HIV and especially Hepatitis C is high among people who inject drugs (PWID) in New York, about a third of those who have injected for 8–15 years have avoided infection by either virus despite their long-term drug use. Based on life history interviews with 35 long-term PWID in New York, this article seeks to show how successful integration and performance of various drug using and non-drug using roles may have contributed to some of these PWID’s staying uninfected with either virus. We argue that analysis of non-risk related aspects of the lives of the risk-takers (PWID) is very important in understanding their risk-taking behaviour and its outcomes (infection statuses). Drawing on work-related, social and institutional resources, our double-negative informants underwent both periods of stability and turmoil without getting infected.