Hi all, here’s the first part of the journal roundup for this month for the Annual Review of Anthropology, Medical Anthropology Quarterly, Social Science & Medicine, Social Studies of Science, and Sociology of Health & Illness.
Disability is a profoundly relational category, shaped by social conditions that exclude full participation in society. What counts as an impairment in different sociocultural settings is highly variable. Recently, new approaches by disability scholars and activists show that disability is not simply lodged in the body, but created by the social and material conditions that “dis-able” the full participation of those considered atypical. Historically, anthropological studies of disability were often intellectually segregated, considered the province of those in medical and applied anthropology. We show the growing incorporation of disability in the discipline on its own terms by bringing in the social, activist, reflexive, experiential, narrative, and phenomenological dimensions of living with particular impairments. We imagine a broad future for critical anthropological studies of disability and argue that as a universal aspect of human life this topic should be foundational to the field.
Indigenous circumpolar populations have experienced profound transitions in lifeways over the past half-century as a result of economic development. Although there have been positive aspects of this social transformation, most circumpolar groups today have a triple burden of disease, with a modestly elevated infectious disease level, an elevated and increasing burden of chronic conditions such as obesity and cardiovascular disease, and high rates of mental health–related challenges. The health of contemporary circumpolar populations is not easily characterized because of dramatic regional differences that stem from socioeconomic disparities among nonindigenous groups, individual population histories, lifestyle factors, environmental pollution, and underlying biological variation. Overall health and well-being range from excellent among the Sami of Sweden and Norway to extremely poor among marginalized native populations in northern Russia. Circumpolar groups today are not only threatened by continued regional economic development and pollution, but also uniquely vulnerable to global climate change.
Anthropology has been involved with the field of organ transplantation almost since its inception. As a rapidly growing subfield within biomedicine, transplantation has been analyzed as one more example of the technological imperative: the development and application of new procedures and techniques that bring, in their wake, major changes in how humans relate to their bodies. Anthropologists have been especially interested in the psychological adjustment of organ recipients as they come to terms with the sacrifices or deaths that were necessary to provide them with organs and as they respond to the presence of an outsider in their bodies. Critical medical anthropologists have focused more on donor issues, raising ethical questions about transplant tourism and the commodification of organs and challenging the universal validity of brain death as the death of a person.
This review aims to explore the relationship between anthropology and genetics, an intellectual zone that has been occupied in different ways over the past century. One way to think about it is to contrast a classical “anthropological genetics” (Roberts 1965), that is to say, a genetics that presumably informs anthropological issues or questions, with a “genomic anthropology” (Pálsson 2008), that is to say, an anthropology that complements and relativizes modern genomics (on the model of, say, medical anthropology and legal anthropology).1 This review argues that a principal contribution of anthropology to the study of human heredity lies in the ontology of genetic facts. For anthropology, genetic facts are not natural, with meanings inscribed on them, but are instead natural/cultural: The natural facts have cultural information (values, ideologies, meanings) integrated into them, not layered on them. To understand genetic facts involves confronting their production, which has classically been restricted to questions of methodology but which may be conceptualized more broadly. This review is not intended as a critique of the field of anthropological genetics, but as a reformulation of its central objects of study. I argue for reconceptualizing the ontology of scientific facts in anthropological genetics, not as (value-neutral) biological facts situated in a cultural context, but instead as inherently biocultural facts.
Over the past 20 years, there has been considerable anthropological investigation into the processes that many have come to label globalization. Although attempts within the social sciences have considered globalization processes in relation to articulations among ethnicity, gender, and sexuality, processes of racialization have only recently been taken up as central issues. In this article, we observe several new strategies of governance that emerged in the late twentieth century and onward and their implications for approaches to and understandings of race in the twenty-first century. These strategies have created new institutional spheres through which processes of racialization have proliferated, while still recalling earlier organizations of social division and classifications of human value. We reflect on significant spatial and temporal moments in an attempt to reanimate the way that economic and political processes not only have been managed through ideas about race but also have played out in relation to pre-existing social relations of inequality, poverty, and global exclusion. We are also interested in the ambiguities and challenges of racial meanings as they operate within multiple orders and different scales, especially in relation to contemporary intellectual silences.
A mainstream narrative in the academy casts hidebound authority as the enemy of evidence and, in many cases, the truth. In this review, I argue for an ethnographic and linguistic approach to evidence and authority as communicative practices that are not inherently opposed but rather inseparably intertwined. For ethnographers, authority can usefully be viewed as authorizing acts (recognizing that the act includes the receiver), and evidence can be thus treated as a kind of authorization, an act of providing evidence. Viewed in this more dynamic framework, authority and evidence become observable practices in which actors deploy cultural forms—performances, experiments, verb tenses, quotes, narratives, pronouns—to persuade, argue, confirm, and mediate social and cultural relations.
Infrastructures are material forms that allow for the possibility of exchange over space. They are the physical networks through which goods, ideas, waste, power, people, and finance are trafficked. In this article I trace the range of anthropological literature that seeks to theorize infrastructure by drawing on biopolitics, science and technology studies, and theories of technopolitics. I also examine other dimensions of infrastructures that release different meanings and structure politics in various ways: through the aesthetic and the sensorial, desire and promise.
Medical Anthropology Quarterly June 2013
In South Africa, the response to HIV and TB epidemics is complex, varied, and contextually defined. “Task-shifting” and a movement toward a decentralized model of care have led to an increased reliance on community health workers (CHWs) providing health care services to residents of impoverished, peri-urban areas. Public health policy tends to present CHWs as a homogeneous group, with little attention paid to the nuances of experience, motivation, and understanding, which distinguish these care workers from one another and from other kinds of health workers. An exploration of the layered meanings of providing community health care services under financially, politically, and socially difficult conditions reveals clear distinctions of experience across the generations. Many older CHWs say that ubuntu, a notion of shared African humanity, is being “killed off” by the younger generation, whereas younger CHWs often describe older women as being “jealous” of the opportunities that this younger generation has for education, training, and employment. The structure of the South African health system, past and present responses to disease epidemics, and the legacy of apartheid’s structural violence have amplified these generational differences among CHWs. Using ethnographic data collected from approximately 20 CHWS in a peri-urban settlement in Cape Town, South Africa, I explore how CHWs experience and understand legitimacy in the moral economy of care. A call for closer attention to the experiences of CHWs is critical when designing public health policies for the delivery of health care services in impoverished communities in South Africa.
Recently, social determinants of health frameworks are receiving some criticism in that they do not engage with questions related to individual subjectivity and agency as they relate to health decision-making behavior. This article examines the different ways in which people living in a remote Arnhem Land community in the Northern Territory of Australia, take responsibility for their own health and the extent to which they are able to prevent illness. A number of related sub-questions are explored relating to how people perceive their health and their role in health care in their community, including their engagement with the health clinic, traditional medicines, and the influence of sorcery on ill health and sickness.
This article examines the trope of reproduction in narratives of Tibetan refugees living in Dharamsala, India. As they make sense of their personal histories, Tibetan refugees invoke a collective story that mirrors human rights literature on Tibet. Women come into contact with this literature through its incorporation into a political discourse expressed by the exile government and health institutions. The article traces facets of this discourse that deal centrally with reproduction. Political discourse on reproduction articulates pronatalism as a solution to the refugee community’s concern with survival, and the discourse frames modernity as a site of violence through China’s reproductive regulations. And yet, Tibetan refugees also employ the notion of modernity when discussing their own free reproductive decision-making, positioning modern reproductive interventions in opposition to Indian society. The article demonstrates that Tibetan refugees navigate competing figurations of modernity by expressing political resistance and affiliation through the idiom of reproduction.
Making Sense of HIV in Southeastern Nigeria : Fictional Narratives, Cultural Meanings, and Methodologies in Medical Anthropology (Kate Winskell, Peter J. Brown, Amy E. Patterson, Camilla Burkot and Benjamin C. Mbakwem) OA
Fictional narratives have rarely been used in medical anthropological research. This article illustrates the value of such narratives by examining how young people in southeastern Nigeria navigate the cultural resources available to them to make sense of HIV in their creative writing. Using thematic data analysis and narrative-based methodologies, it analyzes a sample (N = 120) from 1,849 narratives submitted by Nigerian youth to the 2005 Scenarios from Africa scriptwriting contest on the theme of HIV. The narratives are characterized by five salient themes: tragedy arising from the incompatibility of sex outside marriage and kinship obligations; female vulnerability and blame; peer pressure and moral ambivalence; conservative Christian sexual morality; and the social and family consequences of HIV. We consider the strengths and limitations of this narrative approach from a theoretical perspective and by juxtaposing our findings with those generated by Daniel Jordan Smith using standard ethnographic research methods with a similar Igbo youth population.
This article analyzes tensions between aesthetics and health in medicine. The blurring of distinctions between reconstructive and cosmetic procedures, and the linking of plastic surgery with other medical treatments, have added to the legitimacy of an emerging “aesthetic medicine.” As cosmetic surgeries become linked to other medical procedures with perceived greater medical necessity, health and aesthetics become entangled. One consequence is that medical needs are magnified while perceptions of the risks of surgery are minimized. Drawing on ethnographic work on plastic surgery, as well as other studies of obstetrics and cosmetic surgery, I illustrate this entanglement of health and aesthetics within the field of women’s reproductive health care in Brazil. I argue that while it would be difficult to wholly disentangle aesthetics and health, analysis of how risk–benefit calculations are made in clinical practice offers a useful critical strategy for illuminating ethical problems posed by aesthetic medicine.
Race, although an unscientific concept, remains prominent in health research and clinical guidelines, and is routinely invoked in clinical practice. In interviews with 58 primary care clinicians we explored how they understand and apply concepts of racial difference. We found wide agreement that race is important to consider in clinical care. They explained the effect of race on health, drawing on common assumptions about the biological, class, and cultural characteristics of racial minorities. They identified specific race-based clinical strategies for only a handful of conditions and were inconsistent in the details of what they said should be done for minority patients. We conclude that using race in clinical medicine promotes and maintains the illusion of inherent racial differences and may result in minority patients receiving care aimed at presumed racial group characteristics, rather than care selected as specifically appropriate for them as individuals.
This article argues for a shift from an evaluation of the efficacy of “traditional medicine” to an analysis of the influence of notions of efficacy on health seeking and health outcomes. Studies on the therapeutic value of traditional medicine tend to focus on countering or engaging with biomedical models to explain the process and efficacy of healing. Less examined is how efficacy is evaluated by traditional healers and patients themselves. Ethnographic research focused on health seeking and language use in Tonga reveals a diversity of claims of efficacy that relate to the social and epistemological positions of healers, health workers, and patients. Using the celebrated case of a man who was cured by a healer after the hospital could do no more for him facilitates greater epistemological dialogue and poses a challenge to the current efficacy consensuses in medical anthropology and Tonga
Social Studies of Science October 2013-10-23
For 18 years, from 1984 to 1998, the Vietnam crypt of the Tomb of the Unknowns in Arlington National Cemetery housed the remains of a soldier whose anonymity helped shoulder a nation’s grief and fuel its memory. They were those of First Lieutenant Michael J. Blassie, an Air Force pilot shot down over hostile territory in southern Vietnam in 1972. On 14 May 1998, Blassie’s then-unrecognized remains became the only set at the memorial to be disinterred and identified – an act that signaled an important shift in forensic practice and the state’s means of commemorating its missing and unknown members of the military. Tracing the story of the Vietnam Unknown’s (de)identification, this article examines the gradual though foundational reframing of the connection between national memory and identity expressed through care for those who ‘made the ultimate sacrifice’. Whereas memorials of the past, such as the Tomb of the Unknowns, emphasized collective or anonymous groupings of war dead in articulating national identity, the changing technology of identification, particularly brought about by advances in DNA testing, has enabled individuated memorializing. Naming each dead soldier, returning each set of remains to surviving families, no matter how partial or delayed, personalizes the ideals of sacrifice and honor embodied in the fallen soldier and invites localized, communal remembrance. The shifts in technology and memory that have rewritten the story of the Vietnam Unknown not only altered modes of national commemoration, but also lay bare the connections between how war itself is waged, death justified, and a nation defined through its care for war dead.
This article draws attention to communication across professions as an important aspect of forensic evidence. Based on ethnographic fieldwork in the Swedish legal system, it shows how forensic scientists use a particular quantitative approach to evaluating forensic laboratory results, the Bayesian approach, as a means of quantifying uncertainty and communicating it accurately to judges, prosecutors, and defense lawyers, as well as a means of distributing responsibility between the laboratory and the court. This article argues that using the Bayesian approach also brings about a particular type of intersubjectivity; in order to make different types of forensic evidence commensurable and combinable, quantifications must be consistent across forensic specializations, which brings about a transparency based on shared understandings and practices. Forensic scientists strive to keep the black box of forensic evidence – at least partly – open in order to achieve this transparency.
Since the emergence of the Evidence-Based Medicine (EBM) movement, the nature and role of evidence in medicine has been much debated. The formal classification of evidence that is unique to Evidence-Based Medicine, referred to as the Evidence hierarchy, has been fiercely criticized. Yet studies that examine how Evidence is classified in EBM practice are rare. This article presents an observational study of the nature of Evidence and Evidence-Based Medicine as understood and performed in practice. It does this by examining how an absence of Evidence is defined and managed in Evidence-Based Guideline development. The EBM label does not denote the quantity or quality of evidence found, but the specific management of the absence of evidence, requiring a transparently reported process of evidence searching, selection and presentation. I propose the term ‘Evidence Searched Guidelines’ to better capture this specific way of ‘being’ EBM. Moreover, what counts as Evidence depends not just on the Evidence hierarchy, but requires agreement between the members of each guideline development group who mobilize a range of ‘other’ knowledges, such as biological principles and knowledge of the clinic. In addition, I distinguish four non-Evidentiary justifications that are relied upon in the formulation of recommendations (literature, qualified opinions, ethical principles, and practice standards). These are not always secondary to Evidence but may be positioned outside the hierarchy, allowing them to trump Evidence. The legitimacy of Evidence-Based Medicine relies neither on experts nor numbers, but on distinct procedures for handling (non-)Evidence, reflecting its ‘regulatory objectivity’. Finally, the notion of transparency is central for understanding how Evidence-Based Medicine regulates, and is regulated within, contemporary biomedicine.
Illness narratives have mainly focused on individual patients’ accounts, and particularly those of people experiencing the onset of chronic illness in mid-life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75–85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co-presentation of identity were identified. The ‘united couple’ described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as ‘positive’, involving self-reliant couples who took pride in how they managed and ‘frustrated’ in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity.
Drawing on qualitative interview accounts with people who have injected drugs, we deploy ideas of biological and therapeutic citizenship to explore how the negotiation of access to hepatitis C treatment enacts patient citizenship potential. We find that the patient citizenship made through hepatitis C treatment divides those who are deserving from those who are not, largely in relation to their presentations of self-control, responsibility and recovery regarding drug use. Accessing treatment requires that patients negotiate their entitlement by reflexively producing the patient citizen role expected of them. In this context of rationed treatment expectation, access to treatment is constructed in relation to gratitude rather than entitlement. Rationed treatment expectation also interplays with a utilitarian approach to hepatitis C expertise. Accounts of the bio-effects of hepatitis C and its treatment as uncertain further weaken the potential for shared illness identity and biosocial membership as well as contributing to treatment delay. We conclude that the construction of hepatitis C treatment as a negotiation of ‘recovery towards normality’ positions people who continue to use or inject drugs as beyond patient citizenship. Our findings underscore the situated limits of therapeutic and biological citizenship, emphasising that these processes are unavoidably forces of governance.
In the contemporary HIV epidemic, antiretroviral treatments are increasingly considered so effective at viral suppression that they render people with HIV sexually non-infectious. With its radical implications for global HIV prevention, this emerging paradigm is invested with the potential to turn the epidemic around and to ‘normalise’ one of the most feared infectious diseases in history, thus echoing wider trends of ‘biomedicalisation’. What remains unexamined is whether this paradigm shift will bring about a parallel shift in the embodied experiences of being HIV-positive. This article explores the nascent trajectory from infectious to non-infectious corporeality against the backdrop of the discursive history of HIV, with particular focus on the landmark Swiss Consensus Statement, and in the context of research with heterosexuals with HIV in Australia. In-depth interviews revealed that HIV corporeality was not a stable, homogenised experience across participants and time, nor did it simply follow medical discourses. Instead, HIV corporeality emerged as a contingent set of tensions between conflicting discourses of infectiousness that were negotiated and made sense of within situated and embodied life histories. These findings pose challenges to the imperative of HIV normalisation and the related tendency in HIV prevention to universalise the notion of ‘infectiousness’.
Social Science and Medicine
Recent reports by the Centers for Disease Control and Prevention have decried the high rate of fetal mortality in the contemporary United States. Much of the data about fetal and infant deaths, as well as other poor pregnancy outcomes, are tabulated and tracked through vital statistics. In this article, I demonstrate how notions of fetal death became increasingly tied to the surveillance of maternal bodies through the tabulating and tracking of vital statistics in the middle part of the twentieth century. Using a historical analysis of the revisions to the United States Standard Certificate of Live Birth, and the United States Standard Report of Fetal Death, I examine how the categories of analysis utilized in these documents becomes integrally linked to contemporary ideas about fetal and perinatal death, gestational age, and prematurity. While it is evident that there are relationships between maternal behavior and birth outcomes, in this article I interrogate the ways in which the surveillance of maternal bodies through vital statistics has naturalized these relationships.
Both increasing women’s autonomy and increasing husbands’ involvement in maternal health care are promising strategies to enhance maternal health care utilization. However, these two may be at odds with each other insofar as autonomous women may not seek their husband’s involvement, and involved husbands may limit women’s autonomy. This study assessed the relationship between women’s autonomy and husbands’ involvement in maternal health care. Field work for this study was carried out during September–November 2011 in the Kailali district of Nepal. In-depth interviews and focus group discussions were used to investigate the extent of husbands’ involvement in maternal health care. A survey was carried out among 341 randomly selected women who delivered a live baby within one year prior to the survey. The results show that husbands were involved in giving advice, supporting to reduce the household work burden, and making financial and transportation arrangements for the delivery. After adjustment for other covariates, economic autonomy was associated with lower likelihood of discussion with husband during pregnancy, while domestic decision-making autonomy was associated with both lower likelihood of discussion with husband during pregnancy and the husband’s presence at antenatal care (ANC) visits. Movement autonomy was associated with lower likelihood of the husband’s presence at ANC visits. Intra-spousal communication was associated with higher likelihood of discussing health with the husband during pregnancy, birth preparedness, and the husbands’ presence at the health facility delivery. The magnitude and direction of association varied per autonomy dimension. These findings suggest that programs to improve the women’s autonomy and at the same time increase the husband’s involvement should be carefully planned. Despite the traditional cultural beliefs that go against the involvement of husbands, Nepalese husbands are increasingly entering into the area of maternal health which was traditionally considered ‘women’s business’.
Social Science and Medicine has a Special issue for September: Complexity in Health and Health Care Systems (Guest Editors: Tim Tenbensel, University of Auckland, NZ; Stephen Birch, McMaster University, Canada; Sarah Curtis, Durham University, UK)
‘Wandering’ and ‘elopement’ have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of ‘wandering’ and ‘elopement’ reveals a complex intersection of larger issues encountered by families of children with autism. To consider these issues, this article examines ‘wandering’ and ‘elopement’ from the perspectives of African American mothers of children with autism, an underrepresented group in autism research. We consider how the mothers experience these behaviors and the response to these behaviors by professionals, such as service coordinators and law enforcement personnel working within various jurisdictions that become involved with the problem. We analyze the mothers’ narratives about ‘wandering’ and ‘elopement’ drawn from ethnographic interviews that were collected between October 1, 2009 and August 31, 2012. These interviews were part of a larger project on disparities in autism diagnosis and services that followed a cohort of 25 four to ten-year old children. Drawing on narrative, phenomenological and interpretive traditions, we trace the mothers’ developing understandings of ‘wandering’ and ‘elopement’ over time, and show how these understandings become elaborated and transformed. This article provides a nuanced, moment-to-moment and longitudinal picture of the mothers’ experiences of ‘wandering’ and ‘elopement’ that enriches the cross-sectional view of large-scale surveys about the problem and contributes unique insights at the family and community levels. Implications for professional awareness, clinical practice and service provision are also suggested.