As a follow-up to Anna’s post, here are additional September articles of interest.
Anthropology and Medicine
Special Issue: Mediating Medical Technologies: Flows, Frictions and New Socialities
Medical technologies: flows, frictions and new socialities
Anita Hardon & Eileen Moyer
While social scientists often highlight the way medical technologies mediate biomedical hegemony, this special issue focuses on the creative and often unexpected ways in which medical technologies are appropriated by diverse actors in homes, clinics and communities. The authors highlight key insights from twelve ethnographic case studies conducted in North and South America, Western Europe, Sub-Saharan Africa and Southeast Asia. The case studies focus on, among other issues, how sperm donors in Denmark, despite being subjugated to medical surveillance, experience the act of donating sperm as liberating; how sex workers in Indonesia turn to psychoactive painkillers to feel confident when approaching clients; why some anorexic patients in the United States resist prescribed antidepressant drugs; and how adolescent sex education workshops in Ecuador are appropriated by mothers to monitor their daughters and shame their ‘lying husbands’. Hardon and Moyer conclude that studies of medical technology need to be sensitive to the micro-dynamics of power, the specificities of local markets in which medical technologies generate value, the social and intergenerational relations in which they are embedded, and their intersections with class hierarchies.
To prevent HIV transmission through breastfeeding, African health services in 1998 implemented the World Health Organization’s approach of ‘informed choice’ when recommending infant feeding options to HIV-positive mothers. In 2010, ‘informed choice’ was withdrawn in favour of antiretroviral prophylaxis with breastfeeding. A 2010–11 ethnographic study conducted in Senegal among HIV-positive mothers revealed three broad responses to the withdrawal of choice and formula provision: ‘resistance’ from association members claiming the health system was responsible for providing formula to ensure efficient prevention; ‘compliance’ among mothers adopting ‘protected breastfeeding’ without complaints; and ‘self-reliance’ among women trying to obtain formula through other means without mentioning choice. These three responses shed light on the meanings attributed to choice and on the social impact of formula provision during the ‘informed choice era.’ The analysis shows that the top-down introduction of ‘informed choice’ as an ethical and management imperative was appropriated and re-signified locally, making space for new forms of sociality within medical and associative social spaces. These social forms could not easily be maintained after the withdrawal of formula provision; women who continue to exert choice do so silently. By focusing on the upheaval of social care arrangements after the introduction of prophylaxis by pharmaceuticals, this paper sheds light on the understudied local consequences of changes in public health policies and the social framing of ‘choice’ in low-income countries’ health systems.
When in-vitro fertilization (IVF) was introduced in the 1970s, doctors were criticized for not properly informing prospective users about its possible risks and limited success rates as well as for medicalizing fertility problems. Nowadays, many fertility clinics are seeking to improve their accountability to stakeholders through patient-centred practices. Based on an ethnographic study of a Dutch fertility clinic, outspoken in its aims to provide patient-centred medicine and to empower clients, this paper addresses how patient-centred medicine affects couples’ decision-making to use IVF and related reproductive technologies. The author contends that while patient-centred practices facilitate informed decision-making and support couples emotionally, they may also have unintended disciplining and normalizing effects. The information and support provided, the trust couples have in clinic staff, the ongoing visualization of conception mediated by medical technology – all can be seen as practices that strengthen lay people’s ‘medical gaze’ in how they come to view their bodies, fertility problems and possible solutions. These unintended effects are labelled ‘the ambiguity of patient-centeredness’ as they (may) interfere with processes of autonomous decision-making.
When families fail: shifting expectations of care among people living with HIV in Nairobi, Kenya
Eileen Moyer & Emmy Kageha Igonya
The availability of free antiretroviral treatment in public health facilities since 2004 has contributed to the increasing biomedicalization of AIDS care in Kenya. This has been accompanied by a reduction of funding for community-based care and support organizations since the 2008 global economic crisis and a consequent donor divestment from HIV projects in Africa. This paper explores the ways that HIV interventions, including support groups, home-based care and antiretroviral treatments have shaped expectations regarding relations of care in the low-income area of Kibera in Nairobi, Kenya, over the last decade. Findings are based on 20 months of ethnographic research conducted in Nairobi between January 2011 and August 2013. By focusing on three eras of HIV treatment – pre-treatment, treatment scale-up, and post-crisis – the authors illustrate how family and community-based care have changed with shifts in funding. Many support groups that previously provided HIV care in Kibera, where the state is largely absent and family networks are thin, have been forced to cut services. Large-scale HIV treatment programmes may allow the urban poor in Nairobi to survive, but they are unlikely to thrive. Many care needs continue to go unmet in the age of treatment, and many economically marginal people who had found work in care-oriented community-based organizations now find themselves jobless or engaged in work not related to HIV.
In 2006, the Kenyan state joined the international commitment to make antiretroviral treatment free in public health institutions to people infected with HIV. Less than a decade later, treatment has reached over 60% of those who need it in Kenya. This paper, which is based on an in-depth ethnographic case study of the HIV treatment programme at Kenyatta National Hospital, conducted intermittently between 2008 and 2014, examines how HIV-positive peer mentors encourage and track adherence to treatment regimens within and beyond the clinic walls using mobile phones and computer technology. This research into the everyday practices of patient monitoring demonstrates that both surveillance and adherence are collective activities. Peer mentors provide counselling services, follow up people who stray from treatment regimens, and perform a range of other tasks related to patient management and treatment adherence. Despite peer mentors’ involvement in many tasks key to encouraging optimal adherence, their role is rarely acknowledged by co-workers, hospital administrators, or public health officials. Following a biomedical paradigm, adherence at Kenyatta and in Kenya is framed by programme administrators as something individual clients must do and for which they must be held accountable. This framing simultaneously conceals the sociality of adherence and undervalues the work of peer mentors in treatment programmes.
This paper, analyzing interviews with men that donate their semen in Denmark, explores what it means to be a sperm donor. Breaking with the assumption that men have a specific and clearly identifiable motivation to become sperm donors, this paper leaves the confinement of such an accountable actor model implied in asking for men’s motivations to donate semen. Instead, the author describes the experiences of sperm donors to show how the moral, organizational, and biomedical-technological context of sperm donation in Denmark makes for enactments of moral selves as well as specific embodiments of masculinity. Instead of looking for motivations that can be accounted for, the author engages with the question of how donating semen affords men the experience of moral and gendered selves.
This paper examines how men’s reproductive bodies are problematised in rural northern Malawi as access to biomedically defined diagnoses of the health of men’s sperm contribute to the visibility of male infertility. Ethnographic research with infertile and fertile men explored pathways into the sexual health and fertility services offered in district hospitals, men’s clinical engagements and masculine imaginaries. The research suggested that men’s willingness to be referred for semen analysis is an extension of intensive and persistent help-seeking for childlessness instigated by couples and encouraged by families. Within the laboratory, acceptable social arrangements for semen sample collection are negotiated between male clients and laboratory staff, which emphasise heterosexual and marital virility. Following diagnosis, counselling by clinical officers, without any significant therapeutic interventions, focuses on compassion in marriage. This paper considers: what is the role of semen analysis within public health facilities and why do men participate? How do men experience an infertility diagnosis and what do they and their partners do with this knowledge? In addition, how do these practices shape gendered relationships in families and communities? The analysis builds on Inhorn’s (2012) concept of ‘emergent masculinities’ to better understand the connections between male subjectivities, medical technologies and the globalisation of male reproductive health, as they relate to men’s lives in rural Malawi.
The unintended consequences of sex education: an ethnography of a development intervention in Latin America
Erica Nelson, Alexander Edmonds, Marco Ballesteros, Diana Encalada Soto & Octavio Rodriguez
This paper is an ethnography of a four-year, multi-disciplinary adolescent sexual and reproductive health intervention in Bolivia, Nicaragua and Ecuador. An important goal of the intervention – and of the larger global field of adolescent sexual and reproductive health – is to create more open parent-to-teen communication. This paper analyzes the project’s efforts to foster such communication and how social actors variously interpreted, responded to, and repurposed the intervention’s language and practices. While the intervention emphasized the goal of ‘open communication,’ its participants more often used the term ‘confianza’ (trust). This norm was defined in ways that might – or might not – include revealing information about sexual activity. Questioning public health assumptions about parent–teen communication on sex, in and of itself, is key to healthy sexual behavior, the paper explores a pragmatics of communication on sex that includes silence, implied expectations, gendered conflicts, and temporally delayed knowledge.
Medical borderlands: engineering the body with plastic surgery and hormonal therapies in Brazil
Alexander Edmonds & Emilia Sanabria
This paper explores medical borderlands where health and enhancement practices are entangled. It draws on fieldwork carried out in the context of two distinct research projects in Brazil on plastic surgery and sex hormone therapies. These two therapies have significant clinical overlap. Both are made available in private and public healthcare in ways that reveal the class dynamics underlying Brazilian medicine. They also have an important experimental dimension rooted in Brazil’s regulatory context and societal expectations placed on medicine as a means for managing women’s reproductive and sexual health. Off-label and experimental medical use of these treatments is linked to experimental social use: how women adopt them to respond to the pressures, anxieties and aspirations of work and intimate life. The paper argues that these experimental techniques are becoming morally authorized as routine management of women’s health, integrated into mainstream Ob-Gyn healthcare, and subtly blurred with practices ofcuidar-se (self-care) seen in Brazil as essential for modern femininity.
On Coba and Cocok: youth-led drug-experimentation in Eastern Indonesia
Anita Hardon & Nurul Ilmi Idrus
The everyday lives of contemporary youths are awash with drugs to boost pleasure, moods, sexual performance, vitality, appearance and health. This paper examines pervasive practices of chemical ‘self-maximization’ from the perspectives of youths themselves. The research for this paper was conducted among male, female and transgender (male to female, so-called waria) sex workers in Makassar, Indonesia. It presents the authors’ ethnographic findings on how these youths experiment with drugs to achieve their desired mental and bodily states: with the painkiller Somadril to feel happy, confident and less reluctant to engage in sex with clients, and contraceptive pills and injectable hormones to feminize their male bodies and to attract customers. Youths are extremely creative in adjusting dosages and mixing substances, with knowledge of the (mostly positive) ‘lived effects’ of drugs spreading through collective experimentation and word of mouth. The paper outlines how these experimental practices differ from those that have become the gold standard in biomedicine.
Biomedical subjectivities and reproductive assumptions in the CAMELIA clinical trial in Cambodia
Pascale Hancart Petitet
The inclusion of women in clinical trials has raised a variety of ethical and practical issues in their implementation. In the recent CAMELIA clinical trial in Cambodia, the inclusion criteria included a negative pregnancy test and signature of the consent form confirming commitment to double contraceptive use as patients were given drugs contra-indicated in case of pregnancy. But despite precautions and the requirement stated in the informed consent form, 19 out of 236 enrolled women became pregnant during the trial. The current paper describes the frictions and subjectivities that emerge as new medical technologies travel to resource-poor settings – and more specifically, how trial researchers, health workers, and research subjects involved in the CAMELIA trial negotiate the injunction to avoid pregnancy while using a teratogenic drug.
Individuals with eating disorders often exhibit profound ambivalence towards taking prescribed medications. They may actively restrict their intake of medications, take them and then purge them, or hoard them and ‘binge’ on them. Such behaviors are often labeled clinically as ‘treatment resistance,’ and power struggles over medication adherence between clinicians and clients often ensue. This paper advances an alternative perspective. Based on extensive ethnographic and clinical engagements with women with eating disorders who restrict their medication intake, the analytical focus is pivoted to consider medication refusal not only as communicative in the interpersonal realm, but also as a powerful means of self-communication within the context of a larger ethical and moral project. This larger project makes visible the underside of what Lakoff (2008) calls the logic of pharmaceutical reason, which presumes that people naturally strive for optimal health. For these clients, by contrast, the optimal state is not health, but deprivation, which is experienced as a moral imperative extending well beyond issues related to body weight and shape. Within a broader cultural context where medication use is increasingly viewed as a legitimate and even superior means of self-management, medication restriction among people with eating disorders signals layers of meaning far beyond ‘treatment resistance.’ Refusing needed or useful medication can become a private and personally meaningful practice, largely independent of the material or interpersonal effects of the drugs. This suggests that the symbolic significance of medications must in some cases be discerned by their selective absence.
Caring on the margins of the healthcare system
Aline Sarradon-Eck, Cyril Farnarier & Takeo David Hymans
This paper addresses the working practices of a mobile mental health outreach team in a large French city, one that ‘targets’ homeless people with severe psychiatric disorders who are considered ‘hard to reach’ by the public health authorities and medical services. Analysis of the team’s work – where acts of curing and caring are closely tied – reveals the importance of moving beyond a polarized vision of cure and care. The paper departs from much of the literature on the medicalization of social problems by arguing that medicalization is not only a means of social control, but has ethical value as well. In examining the practices of frontline health workers, it aims to show that integrating the methods and theoretical approaches of social work in medical practice is necessary to address the specific problems of homeless people, to enable health professionals to pursue medical cures, and to challenge the shortcomings of public policy.
Measuring risk, managing values: health technology and subjectivity in Denmark
Julie Høgsgaard Andersen & Susan Reynolds Whyte
Based on fieldwork among Danes with a diagnosed risk of type 2 diabetes or cardiovascular disease, this paper investigates how the technological possibilities of diagnosing and monitoring invisible risks shape understandings of health and form subjectivity. It focuses on the experiences of being diagnosed with a risk condition in the form of high blood pressure or elevated blood glucose and the ensuing use of measuring devices. It argues that measurements of these conditions can be seen as ‘formative processes’ that produce and maintain a view of health as something that can best be known through the use of medical technology. The numerical values such measurements yield are seen as true indicators of health, and doing something about risk conditions is felt to be a personal imperative. The formative processes illustrated in this paper are motivational and thought provoking. The informants do not experience new symptoms after being diagnosed; rather they reflect upon their health in a new way and numbers become associated with personal responsibility and morality. However, because numbers influence subjective experiences, they can come to take up too much space in everyday life. Therefore, people have reservations about how often they should measure their values at home. The formative processes of being diagnosed with a risk condition are thus about subjectivity both in the sense of being subject to the demands of living with an illness and of being a subject who acts to keep life from being colonized by concerns about health.
Based on an ethnographic analysis of religious healing rituals in Israel, this paper addresses the question of how healer–client relations are structured on these rituals. An examination of what takes place at the rallies held by Rabbi Amnon Yitzhak indicates that, apart from the regular blessings, which can be referred to as ordinary healing, there are some ritual events that can be referred to as ‘deep healing’. The current paper demonstrates how deep healing rituals are generally conducted in severe cases through give-and-take between the rabbi and the person upon whom the blessing is bestowed, and that they are linked to relationships between people and the ethic of mutual support.
Based on ethnographic fieldwork in a coastal village in south-eastern Tanzania, this paper examines how social inequalities and social suffering become embodied in the lived experiences of hunger. The paper explores local meanings of food, fertility and hunger and how these concepts interconnect and materialize on a landscape impacted by two large-scale conservation and development projects, the Mtwara Development Corridor and the Mnazi Bay Ruvuma Estuary Marine Park. Fourteen in-depth interviews Sinde villagers were conducted to elicit narratives about their food experiences in addition to 24 hour food recall and pile sort to explore local taxonomies of food. One focus group discussion with six women was also conducted. The study finds displacement from resources by the conservation and development projects has exacerbated existing food security issues of irregular rains, increasing food prices and malnourished bodies. The downward cycle of food insecurity has local villagers worried about the viability of their community’s future, embodied in the health of local children and their performance in school. Increasing food insecurity is internalized within the community as infertility where the health of the landscape is connected to the health of society.
This paper describes the appearance and subsequent disappearance of ‘Barrow Man’ and uses anthropological and social psychological theory to examine the socio-cultural, psychological and economic conditions for the existence of the phenomenon. It argues that these conditions were the result of both specific local labour market circumstances and of the effects of global political changes, and argues that to talk about ‘Barrow Man’ as if it was a psychiatric diagnosis was to identify a moral construct as a mental disorder. It also argues that at the same time the phenomenon was expressive of certain core values that were not readily acknowledged in everyday clinical practice and that it might therefore best be understood as an institutional category.
Power, change, and ‘the culture of psychiatry’
It is not uncommon to encounter ‘the culture of psychiatry’ used as a descriptive or even explanatory concept in discussions of psychiatric practices and services, specifically in research addressing cultural aspects of psychiatry. Drawing on data from research on the role of culture in psychiatric services in the Boston area, this paper critically examines the attribution of a ‘culture’ to psychiatry, which is prevalent not simply in mainstream psychiatric literature, but also in certain lines of cultural psychiatry, specifically those dedicated to political and anti-racist activism. It is argued that the use of such terminology could be misleading as it implicitly attributes a sense of coherence and agency to what may best be described as a set of related discourses and sociopolitical practices. It is further suggested that, given the implications of using such terminology as ‘culture’ in our discussions of psychiatry as a social institution, a scientific discourse, or a clinical practice, it would be more fruitful to address the analytic concepts of power, meaning, and the sociopolitical functions of psychiatry instead.
What is the role of the voice in Indian explanatory models of madness and psychiatric nosology? Anthropological and psychiatric challenges, it is argued, are crystallised in the voice, a medium that signifies the intersection of models of occult madness and schizophrenia. The psychiatry and religious healing practised at a Sufi shrine in Gujarat differed in terms of the status accorded to the voice: psychiatry interpreted the voice as a symptom of mental disorder, whereas religious healing used the medium in ambiguous practices of possession trance, combining performances of madness and healing. Although ‘doing trance’ is considered an essential part in the process of healing, patients diagnosed with schizophrenia do not experience trance. Their patiency is displaced onto a caretaker. Psychiatric theories resting on the somatised mind partly converge with theories of madness based on sorcery and possession in so far as both posit a direct link between the brain and behaviour. Against the background of the contested religious healing sites that are currently debated in Indian public mental health, attention to multiple dimensions of the voice reveals its significance as an alternative to the psychiatric institutionalisation of people coping with mental disorder. The voice reconciles the dichotomy between scientific psychiatry and traditional ritual healing, partly by making sense of madness by engaging with the sense of hearing.
The importance of contextualization. Anthropological reflections on descriptive analysis, its limitations and implications
Rikke Sand Andersen & Mette Bech Risør
This paper regards a concern for the quality of analyses made on the basis of qualitative interviews in some parts of qualitative health research. Starting with discussions departing in discussions on studies exploring ‘patient delay’ in healthcare seeking, it is argued that an implicit and simplified notion of causality impedes reflexivity on social context, on the nature of verbal statements and on the situatedness of the interview encounter. Further, the authors suggest that in order to improve the quality of descriptive analyses, it is pertinent to discuss the relationship between notions of causality and the need for contextualization in particular. This argument targets several disciplines taking a qualitative approach, including medical anthropology. In particular, researchers working in interdisciplinary fields face the demands of producing knowledge ready to implement, and such demands challenge basic notions of causality and explanatory power. In order to meet these, the authors suggest an analytic focus on process.
Special issue on New Directions in the Anthropology of Morality
Edited by: Julia L Cassaniti and Jacob R Hickman
Moralizing emotion: A breakdown in Thailand
Julia L Cassaniti
Emotional practices serve as privileged sites for moral action in a Buddhist community in Northern Thailand. In this article I draw out some of the theoretical implications of this emphasis for the study of morality, combining an anthropological focus on moments of moral breakdown with a psychological claim about the importance of emotion in moral practice. I do this through a case of emotions experienced surrounding a Northern Thai man afflicted with a severe alcohol-related illness. I trace the emotions experienced by the man, his friends, and his family during this difficult time, and analyze the ways in which their emotions are moralized within their community. Contrasting these emotions with quite different reactions raised by the same situation by members of a nearby Christian Karen community, I show how such emotions are broadly connected to locally constructed religious ideas about the value of calmness and the letting go of affective attachments. Through this study I argue that emotions provide new evidence for culturally variable expressions of morality, less as the underpinning of moral judgments and more as objects of moral assessments, and in doing so suggest a new theoretical and methodological domain for the anthropological study of morality.
Both written under pseudonym, Constance Newland’s My Self and I (1962) and Jane Dunlap’s Exploring Inner Space (1961) are firsthand accounts of psychedelic drug use taken in therapeutic research settings that demonstrate how women’s access to discursive legitimacy was negotiated in mid-twentieth-century life-writing. Newland and Dunlap use realism to connect readers to their psychedelic subjects, while estranging readers’ familiar worldviews through metaphor. Through reader recognition and estrangement, Newland and Dunlap develop readers’ empathy as a reformist tool to challenge standard narratives of literature and science and carve out new representational space for alternative states of consciousness.
This essay argues that breast cancer prognosis potentially produces a dialectic in which the subject is compelled to perceive the body as vulnerable and separate (alien) to the self and that the treatments required make the body more vulnerable and more alien, and that this is held in tension with the fact that the very alienation and heightened vulnerability of the body in breast cancer treatment are productive. Such alienation and vulnerability collapse the boundaries through which the body and self are understood, often demand a conscious intimacy of/with the body, and point to critical enactments and understandings of embodied subjectivity.
Anthropology and emotion
The centrality of emotion in thought and action is increasingly recognized in the human sciences, though basic questions of definition and scope remain unresolved. Where do emotions begin and end? How should we identify and analyse them? How should we write about them? Ethnographic fieldwork, as pioneered by Malinowski, offers powerful insights into the place of emotion in social life; but emotions are peculiarly difficult to capture in the generalizing format of case study and ethnographic summary. In this article I argue that semantic, structural, and discourse-based approaches tend to miss what is most important – what counts for the persons concerned and therefore what makes the emotion. I review the conceptual and methodological issues and conclude that only a narrative approach can capture both the particularity and the temporal dimension of emotion, restoring verisimilitude and fidelity to experience.
Encounters in Cancer Treatment: Intersubjective Configurations of a Need for Rehabilitation
Mette Terp Høybye & Tine Tjørnhøj-Thomsen
Based on extensive ethnographic material from in-depth interviews with Danish cancer patients after treatment, this study analyzes their stories to explore how interactions with the physician configures and situates a need for rehabilitation. We identify three themes in the illness stories: (1) attentiveness and care; (2) fragmentation and objectification; and (3) mistrust and dehumanization. These are all closely tied to the concept of recognition, showing how the themes are configured by the social interaction between the patient and the physician and how the need for rehabilitation is shaped by this encounter. The significance of the social encounters in cancer treatment is elucidated through this analysis, and we demonstrate how the need for recognition of the complex effects of cancer on one’s life is central to counter experiences of objectification and dehumanization.
It is often argued that biomedicine alienates patients from doctors, from ailments and from understanding treatment processes, while indigenous and alternative healing systems are portrayed as respectful of patients and their experience. Specifically, South Indian siddha medicine has been seen as diverging from biomedicine in empowering its patients. This approach not only assumes biomedicine to be a homogeneous practice, but also lumps together diverse therapeutic techniques under the labels of “traditional” or “alternative.” Analysis of a manual subdiscipline of siddha medicine cautions against such analytic imprecision and active/passive binaries in physician–patient encounters. Practitioners of vital spot medicine claim to “heal the hidden.” They rarely communicate diagnostic insights verbally and object to auxiliary devices. However, their physical engagement with patients’ ailing bodies highlights the corporeal nature of manual medicine in particular and processual, situational, and reciprocal characteristics of curing in general.
In October 2007, a series of cholera epidemics broke out in Hanoi, interrupting a moment of economic triumphalism in post-transition Vietnam. In seeking the source of a refractory disease associated with poverty and underdevelopment, officials, media, and citizens not only identified scapegoats and proposed solutions, they also endorsed particular visions of moral conduct, social order, and public health. Controversy over cholera, a potent politico–moral symbol, expressed an imaginary of “tainted commons” (i.e., an emergent space of civil society and small-scale entrepreneurship from which the state has partially withdrawn, while still exercising some measure of scrutiny and control). The ambiguities of this situation permitted the state to assume moral postures, evade responsibility, and deflect criticism to convenient targets. Prevalent outbreak narratives thus played on anxieties regarding specifically classed and gendered social groups, whose behavior was imagined to contravene ideals of public health and order.
“Here Nobody Holds Your Heart”: Metaphoric and Embodied Emotions of Birth and Displacement among Karen Women in Australia
Sara Niner, Renata Kokanovic, Denise Cuthbert & Violet Cho
Our objective was to explore the ways in which displaced Karen mothers expressed emotions in narrative accounts of motherhood and displacement. We contextualized and analyzed interview data from an ethnographic study of birth and emotions among 15 displaced Karen mothers in Australia. We found that women shared a common symbolic language to describe emotions centered on the heart, which was also associated with heart “problems.” This, along with hypertension, collapsing, or a feeling of surrender were associated responses to extremely adverse events experienced as displaced peoples. A metaphoric schema of emotional terms centered on the heart was connected to embodied expressions of emotion related to illness of the heart. This and other embodied responses were reactions to overwhelming difficulties and fear women endured due to their exposure to political conflict and global inequity.
How Women in Bangladesh Confront the Stigma of Childlessness: Agency, Resilience, and Resistance
Papreen Nahar & Sjaak van der Geest
In a context where motherhood is an integral part of a woman’s stereotype, being childless is a devastating experience. We explore how these so-called deviant women manage this situation. The objective of this article is to contribute to the debate regarding infertile women’s agency, resilience, and resistance. This article is based on anthropological fieldwork among urban middle-class and rural poor women. Their life histories reveal that childless women in Bangladesh, a pro-natalist, patriarchal society, are not passive victims, but rather actively fight their stigmatization and manage to survive. The childless women follow overt and covert strategies to overcome their stigmatized identity and create space for themselves in various innovative ways. The women do not resist in a coordinated way as a group, but do so individually. Given the collective nature of a society like rural Bangladesh, we believe that the women’s individual acts will eventually have collective effects.
Women’s pursuit of medical interventions in childbirth has been a challenging issue in feminist and medical anthropological research on the medicalization of reproduction. This article addresses the gender politics surrounding maternal requests for cesarean sections in Taiwan. Since the 1990s, Taiwanese cesarean rates have been reported as among the highest in the world. That is not the case now, yet they are still perceived as such, and the current rate of 37% is indeed high by any standards. The government and public discourses attribute the high cesarean rate to women’s demand for this intervention. However, my ethnographic research indicates that the Taiwanese hospital birthing system leads to the prevalence of cesareans, and that women’s requests for them constitute strategic responses to the system and its existing high cesarean rates. Using women’s attempt to avoid “suffering twice” as an example, I argue that maternal requests for cesareans often lie at the intersection between their restricted control over childbirth and their agency within the medical system.
Chucaque and Social Stress among Peruvian Highlanders
Benjamin Blakely Brooks
Highland agriculturalists complain of the cultural syndrome chucaque in the Peruvian Andes. The first aim of this research was to ethnographically document cases of a cultural syndrome utilizing theoretical elements borrowed from cognitive anthropology. Another aim was to use case-control sampling to determine if there was a relationship between higher social stress levels and the development of a cultural syndrome. The research reported here integrated qualitative and quantitative methods. The social stress gauge developed by Rubel et al. (1984) was adapted to the Andean cultural environment and utilized to assess highland social stressors. Chucaque was found to be locally defined as a specific type of head pain commonly associated with the episode of a traumatic event. Chucaque and household social stress levels were found to be significantly related, especially when the ratio of males to females, which often was imbalanced, was included in the analysis.
This article examines the influence of emotional and instrumental support on women’s immune function, a biomarker of stress, in the city of El Alto, Bolivia. It tests the prediction that instrumental support is protective of immune function for women living in this marginal environment. Qualitative and quantitative ethnographic methods were employed to assess perceived emotional and instrumental support and common sources of support; multiple linear regression analysis was used to model the relationship between social support and antibodies to the Epstein-Barr virus. These analyses provided no evidence that instrumental social support is related to women’s health, but there is some evidence that emotional support from compadres helps protect immune function.
Reassessing the approach to informed consent: the case of unrelated hematopoietic stem cell transplantation in adult thalassemia patients
Salvatore Pisu, Giovanni Caocci, Ernesto d’Aloja, Fabio Efficace, Adriana Vacca,Eugenia Piras, Maria Grazia Orofino, Carmen Addari, Michela Pintor, Roberto Demontis, Federica Demuru, Maria Rita Pittau, Gary S Collins & Giorgio La Nasa
The informed consent process is the legal embodiment of the fundamental right of the individual to make decisions affecting his or her health., and the patient’s permission is a crucial form of respect of freedom and dignity, it becomes extremely important to enhance the patient’s understanding and recall of the information given by the physician. This statement acquires additional weight when the medical treatment proposed can potentially be detrimental or even fatal. This is the case of thalassemia patients pertaining to class 3 of the Pesaro classification where Allogenic hematopoietic stem cell transplantation (HSCT) remains the only potentially curative treatment. Unfortunately, this kind of intervention is burdened by an elevated transplantation-related mortality risk (TRM: all deaths considered related to transplantation), equal to 30% according to published reports. In thalassemia, the role of the patient in the informed consent process leading up to HSCT has not been fully investigated. This study investigated the hypothesis that information provided by physicians in the medical scenario of HSCT is not fully understood by patients and that misunderstanding and communication biases may affect the clinical decision-making process.
A questionnaire was either mailed or given personally to 25 patients. A second questionnaire was administered to the 12 physicians attending the patients enrolled in this study. Descriptive statistics were used to evaluate the communication factors.
The results pointed out the difference between the risks communicated by physicians and the risks perceived by patients. Besides the study highlighted the mortality risk considered to be acceptable by patients and that considered to be acceptable by physicians.
Several solutions have been suggested to reduce the gap between communicated and perceived data. A multi-disciplinary approach may possibly help to attenuate some aspects of communication bias. Several tools have also been proposed to fill or to attenuate the gap between communicated and perceived data. But the most important tool is the ability of the physician to comprehend the right place of conscious consent in the relationship with the patient.
Stem cell research is considered one of the most promising branches of contemporary biomedicine. The capacity to develop into almost any cell type of the mature organism—pluripotency—is associated with human embryonic stem cells (hESCs) and is regarded as having great therapeutic potential. Harvesting stem cells destroys the human embryo, however; so research on embryonic stem cells has provoked controversies. In some countries such as Italy, the use of human embryos for research and therapeutic purposes is strictly forbidden. The Italian restrictive regulation has been explained by structural–cultural factors such as religion, but a better explanation lies in the policy dramaturgies deployed in the Italian debate. It was a struggle between two research trajectories—research on hESCs and on adult stem cells—for monopoly over the most credible therapeutic promise. Each was linked to different views of the Italian social order; each was epistemically legitimized by discourses on pluripotency and on the therapeutic potential of different stem cell types. Catholic actors articulated epistemic discourses on the therapeutic promises of different stem cell sources. The battle to define the social order—between a secular and a confessional view—became a struggle between two research trajectories for monopoly over the most credible therapeutic promise. The restrictive regulatory framework resulted from successfully transforming a policy dramaturgy into a new regulatory order. Thus structural–cultural variables such as religiosity matter only through the agency of institutional actors in local political cultures.
Fighting Fat: The Role of ‘Field Experts’ in Mediating Science and Biological Citizenship
Vienna Setälä & Esa VäLiverronen
Diet, fitness, and healthy living have become popular topics of media coverage and public health campaigns. Stories about the health hazards of fat draw heavily on scientific knowledge, the expertise of scientists and medical doctors, and increasingly on new field experts such as nutrition consultants and personal health trainers. A case study of an anti-fat campaign—the Fat Rebellion—run by Finland’s biggest daily newspaper Helsingin Sanomat, shows that field experts have become important mediators of scientific expertise. Nutrition therapists, personal fitness trainers, lifestyle coaches, and other field experts were the most cited actors in the campaign. The field experts promoted dietary foods, guidance, measurement technologies, and health training. The field experts in the Fat Rebellion also acted as mediators of biological citizenship: participants of the campaign were encouraged to take a greater responsibility for their health and vitality. Compared to scientific experts, field experts did not appear so much as sources of scientific information, but instead as authorised users of that information and specialists of employing commercial health technologies. They give advice and encourage citizens to record their weight and offer detailed prescriptions of healthy lifestyles. This combination of theoretical and practical knowledge as well as their daily or weekly face-to-face relationship with people in quest of healthy lifestyles makes them powerful mediators of biological citizenship.
An Uncertain Risk: The World Health Organization’s Account of H1N1
Scientific uncertainty is fundamental to the management of contemporary global risks. In 2009, the World Health Organization (WHO) declared the start of the H1N1 Influenza Pandemic. This declaration signified the risk posed by the spread of the H1N1 virus, and in turn precipitated a range of actions by global public health actors. This article analyzes the WHO’s public representation of risk and examines the centrality of scientific uncertainty in the case of H1N1. It argues that the WHO’s risk narrative reflected the context of scientific uncertainty in which it was working. The WHO argued that it was attempting to remain faithful to the scientific evidence, and the uncertain nature of the threat. However, as a result, the WHO’s public risk narrative was neither consistent nor socially robust, leading to the eventual contestation of the WHO’s position by other global public health actors, most notably the Council of Europe. This illustrates both the significance of scientific uncertainty in the investigation of risk, and the difficulty for risk managing institutions in effectively acting in the face of this uncertainty.
This article presents a case study of a recent controversy over the use of computed tomography (CT) as a diagnostic technology in South Korean hospitals. The controversy occurred in the wake of a series of conflicts in the late twentieth century over the legitimate placement of healing practices, medicinal substances, and medical technologies within Korea’s separate “Western Medicine” (WM) and “Korean Medicine” (KM) systems of health care and pharmaceutical distribution. The controversy concerned an attempt to use hi-tech imaging technology—the epitome of modern medicine—in a clinic that maintains a strong ideological attachment to Korean healing traditions. A close study of this dispute, based on interviews, participant observation, and documentary analysis, showed that discursive positions taken about the translatability of medical technologies changed with the context of dispute, and did not reflect a stable epistemic boundary between rival medical paradigms.
This article examines the political controversy in the United States surrounding a new process for the disposition of human remains, alkaline hydrolysis (AH). AH technologies use a heated (sometimes pressurized) solution of water and strong alkali to dissolve tissues, yielding an effluent that can be disposed through municipal sewer systems, and brittle bone matter that can be dried, crushed, and returned to the decedent’s family. Though AH is legal in eight US states, opposition to the technology remains strong. Opponents express concerns about public health and safety and about the dignity of our mortal remains. Proponents focus on AH’s environmental benefits over cremation and earth burial, aligning the technology with the “green burial” movement. Drawing from historical sources, Science, Technology, and Society literature, interviews with funeral professionals, industry literature, and various media sources, this article examines four prominent conceptions of the dead human body as they are deployed (and inflected) by various funeral stakeholders seeking to exercise authority over the dead human body, to influence the trajectory of AH technology in the United States, and to chart a course for US deathcare culture in the twenty-first century.
Special Issue: Indigenous Youth Resilience in the Arctic
Mapping resilience pathways of Indigenous youth in five circumpolar communities
James Allen, Kim Hopper, Lisa Wexler, Michael Kral, Stacy Rasmus & Kristine Nystad
This introduction to the Special Issue Indigenous Youth Resilience in the Arctic reviews relevant resilience theory and research, with particular attention to Arctic Indigenous youth. Current perspectives on resilience, as well as the role of social determinants, and community resilience processes in understanding resilience in Indigenous circumpolar settings are reviewed. The distinctive role for qualitative inquiry in understanding these frameworks is emphasized, as is the uniquely informative lens youth narratives can offer in understanding Indigenous, cultural, and community resilience processes during times of social transition. We then describe key shared cross-site methodological elements of the Circumpolar Indigenous Pathways to Adulthood study, including sampling, research design, procedures, and analytic strategies. The site-specific papers further elaborate on methods, focusing on those elements unique to each site, and describe in considerable detail locally salient stressors and culturally patterned resilience strategies operating in each community. The concluding paper considers these across sites, exploring continuities and discontinuities, and the influence of cross-national social policies.
This article examines challenges, coping strategies, and resilience among Eveny adolescents in northeastern Siberia. It explores situations which the study participants associate with challenge and hardship, namely their experiences of transition from life in the family reindeer herding camp to schooling at the age of 7, bullying, boredom, and violence. By situating the data within the Eveny framework of resilience (khinem), the study provides the ethnographic context for coping strategies and efforts (e.g., sharing, inter- and intragenerational support, availability of safe homes) undertaken by the community in order to mitigate the situations of risk and hardship and to facilitate adolescents’ resilience. The account emphasizes that instead of identifying adolescents as either resilient or vulnerable, it is necessary to explore culturally specific processes and practices which potentially contribute to their acquisition of resilience.
Community resilience factors among indigenous Sámi adolescents: A qualitative study in Northern Norway
Kristine Nystad, Anna Rita Spein & Benedicte Ingstad
This qualitative study explores community resilience factors within an indigenous Sámi community in Northern Norway. Semistructured interviews were conducted with 22 informants, 12 females and 10 males, ranging in age from 13 to 19 years old, 12 of whom had reindeer husbandry affiliation. Data analysis used a modified grounded theory approach and narrative analysis. Interpretation of the data was based on ecological perspectives theory and the identification of possible community resilience factors including Sámi language competence, use of recreational and natural resources, and traditional ecological knowledge, such as reindeer husbandry related activities. These cultural factors appear to strengthen adolescents’ ethnic identity and pride, which in turn act as potential resilience mechanisms. Land was a significant arena for traditional practices and recreation. The majority of the youth reported support from relationships with extended godparents (fáddarat) and extended family (sohka) networks. The fáttar network was particularly strong among adolescents with reindeer husbandry affiliations. Native language competence and reindeer husbandry were key components in adolescent social networks. Interconnectedness among the community members and with the environment seemed to promote resilience and well-being. Two factors that excluded adolescents from full community membership and participation were being a nonnative Sámi language speaker and the absence of extended Sámi family networks.
Tunngajuq: Stress and resilience among Inuit youth in Nunavut, Canada
Michael J. Kral, Ida Salusky, Pakkak Inuksuk, Leah Angutimarik & Nathan Tulugardjuk
As part of a cross-national collaborative study of resilience among circumpolar youth, we examined the life experiences, stressors, and coping or resilience strategies of Inuit youth in the community of Igloolik, Nunavut, Canada. An Inuit steering committee was formed with youth, adults, and one elder. The steering committee led this project in the community, informing community members of progress and helping direct all aspects of the study from research questions to methods to data collection to dissemination. A structured interview used across sites allowed youth to describe what matters to them, that is, what is at stake for them in terms of challenges and successes. Developing stable and secure relationships with one’s friends and family members enabled Inuit youth to become more resilient in the face of stresses related to social change in the Canadian Arctic.
Arctic indigenous youth resilience and vulnerability: Comparative analysis of adolescent experiences across five circumpolar communities
Olga Ulturgasheva, Stacy Rasmus, Lisa Wexler, Kristine Nystad & Michael Kral
Arctic peoples today find themselves on the front line of rapid environmental change brought about by globalizing forces, shifting climates, and destabilizing physical conditions. The weather is not the only thing undergoing rapid change here. Social climates are intrinsically connected to physical climates, and changes within each have profound effects on the daily life, health, and well-being of circumpolar indigenous peoples. This paper describes a collaborative effort between university researchers and community members from five indigenous communities in the circumpolar north aimed at comparing the experiences of indigenous Arctic youth in order to come up with a shared model of indigenous youth resilience. The discussion introduces a sliding scale model that emerged from the comparative data analysis. It illustrates how a “sliding scale” of resilience captures the inherent dynamism of youth strategies for “doing well” and what forces represent positive and negative influences that slide towards either personal and communal resilience or vulnerability. The model of the sliding scale is designed to reflect the contingency and interdependence of resilience and vulnerability and their fluctuations between lowest and highest points based on timing, local situation, larger context, and meaning.
“Being responsible, respectful, trying to keep the tradition alive:” Cultural resilience and growing up in an Alaska Native community
Lisa Wexler, Linda Joule, Joe Garoutte, Janet Mazziotti & Kim Hopper
Indigenous circumpolar youth are experiencing challenges of growing up in a context much different from that of their parents and their grandparents due to rapid and imposed social change. Our study is interested in community resilience: the meaning systems, resources, and relationships that structure how youth go about overcoming difficulties. The research reflects an understanding that social and cultural ecologies influence people’s available and meaningful options. The in-depth, qualitative study of 20 youth from the same Arctic community shows Inupiat (Alaska Native) youth are navigating challenges. Findings from this research suggest that Inupiat youth reflect more flexible patterns of resilience when they are culturally grounded. This cultural foundation involves kinship networks that mediate young people’s access to cultural and material assets. Our participants emphasized the importance of taking care of others and “giving back to the community.” Being “in the country” linked youth to traditional ontology that profoundly shifted how youth felt in relation to themselves, to others, and the world. The vast majority of participants’ “fulfillment narratives” centered on doing subsistence and/or cultural activities. In relation to this, young people were more likely to demonstrate versatility in their resilience strategies when deploying coherent self-narratives that reflected novel yet culturally resonant styles. Young women were more likely to demonstrate this by reconfiguring notions of culture and gender identity in ways that helped them meet challenges in their lives. Lastly, generational differences in understandings signal particular ways that young people’s historical and political positioning influences their access to cultural resources.
“Where I have to learn the ways how to live:” Youth resilience in a Yup’ik village in Alaska
Stacy M. Rasmus, James Allen & Tara Ford
What is it like to grow up Yup’ik and come of age today in a traditional hunting-gathering community setting located in a remote region of Alaska? Current research describes a contemporary experience often laden with trauma and crisis. Youth in Yup’ik communities today face threats to their very survival as they encounter, early on, things that their ancestors never faced—including alcohol-related deaths, violence in many forms, and high rates of suicide among their young peers. Yet all is not despair for the youth growing up in these remote indigenous communities. Many youth grow-up to become skilled hunters, strong leaders, and able parents. This paper reports findings from the Alaskan Yup’ik site of the Circumpolar Indigenous Pathways to Adulthood (CIPA) study. The goal of this study is to identify strengths and resilience in youth living in a Yup’ik community in southwest Alaska. Interviews were conducted with 25 youth age 11–18, currently residing in a southwest Alaska community. Qualitative analysis revealed important connections between local stressors, community-level protective resources, and youth-driven, solution-focused strategies for overcoming hardship and learning the “ways how to live.” Findings from this study contribute critical information on indigenous youth protection and resilience, including community and cultural resilience processes beyond the individual level, and enhance our understanding of the types of resources that can lead to improved outcomes for Alaska Native youth.