Here are some highlights from the journals in February 2019. Enjoy!
Cultural Anthropology (Open Access)
Cultural Anthropology brings us multiple articles of interest, plus a collection of essays on the topic of reproductive politics in the age of Trump and Brexit, edited by Faye Ginsburg and Sarah Franklin. The essays in the collection are available (open access) here, and below, an excerpt from the introduction.
Reproductive Politics in the Age of Trump and Brexit (open access)
Sarah Franklin and Faye Ginsburg
[excerpt] For feminists and feminist scholars who have been active in reproductive rights since the 1980s, Donald Trump’s policies concerning national autonomy, religious freedom, increased police and military spending, racial profiling, and border control rearticulate a tragically familiar grammar grounded in a distinctly American legacy of white Christian nationalism and its highly racialized reproductive politics. Above all, this grammar feels familiar from decades of American conflict over the practice of abortion, a political struggle in which, as Faye Ginsburg (1998) documented in her pathbreaking study of the abortion debate in Fargo, North Dakota in the 1980s, issues of race, class, gender, generation, religion, sexuality, and reproduction emerge as the fault lines of mainstream political division and struggle—far more than party politics. In the name of promoting and celebrating a “culture of life,” U.S. right-to-life groups have for more than three decades maintained a campaigning strategy that powerfully links traditional gender roles and family values, opposition to gay marriage, the right to gun ownership, and opposition to abortion within an overarching white settler narrative of lost American greatness. […] Drawing on the legacy of feminist anthropology to parse these new right-wing movements, to which the politics of race and reproduction are fundamental, thus makes for a crucial task. At the 2017 annual meeting of the American Anthropological Association, a panel titled “The Reproductive Politics of Trump and Brexit” that the two of us organized examined not only the prolife foundations of Trumpist populist discourse but also similar forms of populist rhetoric internationally—especially in relation to a rise in anti-immigrant sentiment in Britain and Europe. Focusing on specific case studies, we investigated the overlapping reproductive logics at work in today’s populist and nativist political movements, and we are pleased to present this work as an Openings and Retrospectives collection in Cultural Anthropology.
Author(iz)ing Death: Medical Aid-in-Dying and the Morality of Suicide (open access)
In 2017, Oregon marked the twentieth anniversary of enacting the Death with Dignity Act, allowing terminally ill, mentally competent adult patients to end their life by ingesting a lethal medication prescribed by their physician. In U.S. public discourse, medical aid-in-dying is frequently equated with the terminology and morality of suicide, much to the frustration of those who use and administer the law. This article reflects on the stakes of maintaining a distinction between a medically assisted death and the most common cultural category for self-inflicted death—suicide. It uncovers the complicated dialectic between authorship and authorization that characterizes medical assistance in dying and attendant moralities of purposive death, speaking to broader disciplinary concerns in the cultural study of death and medicine. By stressing the primacy of debilitating, life-limiting illness in an aided death and by submitting such a death to the rationale and management of institutionalized medicine, advocates carve out a form of intentional death that occupies a category of its own. The diffusion of agency onto a patient’s fatal illness, medicine, and the state—both discursively and in practice—enhances the moral and social acceptability of an assisted death, which becomes an authorized form of dying that looks very different from the socially deviant act of suicide.
Deep in the Brain: Identity and Authenticity in Pediatric Gender Transition (open access)
Based on an ethnography of clinical practices around gender-nonconforming and transgender children in the United States, this article explores the cultural and scientific notions of identity that shape this field. It examines the practice of diagnosing true gender identity in the clinic and situates the search for the foundation of identity in the inner depths of the self, and in children as harbingers of authenticity, as part of a broader cultural history. It addresses the scientific substantiation of the faith in innateness (“born this way”) and interiority (“from within”) of identity, as well as their political appeal. This article challenges the often taken-for-granted association of science with materialism—and the distribution of matter-idea along the nature–culture axis—by demonstrating the idealism that drives the siting of identity in the brain. Finally, it questions the assumption that it is the appeal of nature and biology that underlies the cultural attachment to entities such as the gene and the brain as locations for the origin of identity in the contemporary United States. Rather than the nature–culture dyad, this article argues that the internal-external dyad more accurately captures and explains this cultural attachment.
Walk This Way: Fitbit and Other Kinds of Walking in Palestine (open access)
This essay examines how meanings and practices of walking, particularly quantified walking, change according to place. Drawing together my own experience with a wearable computing device called a Fitbit at home and in my field site, East Jerusalem and the occupied West Bank of Palestine, I compare quantified walking and its focus on the self with other forms of walking that highlight place. I examine the relationship between self-monitoring and other-monitoring, especially in relation to walking in Palestine, and I explore how genres of mobility like nature walking or playing Pokémon GO might unfold differently in an occupied territory where the right to move is highly contested. I also explore Palestinian genres of walking, including the wander (sarha). In Palestine, walking becomes an important means not for pursuing personal health, but for cultivating a wider health of the land and knowledge of the nurturing relationship between land and the people who walk across it. Such practices of walking with or walking together can, I conclude, function as forms of kinwork.
Violence has in recent years been framed as a public health problem. The medicalization of violence has involved various public health initiatives, with the USA based violence prevention initiative Cure Violence (CV), being one of the most prominent. CV, which operates in 23 US cities and multiple countries abroad, was launched in 2000 by former WHO epidemiologist Gary Slutkin with the aim to reduce violence. Its public health approach maintains that violence is an actual disease, which can be controlled and contained via epidemiological methods and strategies applied in disease control. This study used discourse analysis to explore how CV’s medicalization of violence is tied to a neoliberal rationality of governing that disentangles violence from structural factors and explains violence solely by reference to individual pathology. In doing so, CV produces new identities based on assumptions concerning biological infection or immunity resistance, which, as its visual language shows, are grounded in race. Through a politics of exclusion, CV turns these ‘at risk’ identities into appropriate targets for health intervention, with the aim of encouraging these to act upon themselves to improve or restore their productive capacities in order to achieve the idealized form of healthy citizenship that CV propagates.
A careful biomedicine? Generalization and abstraction in RCTs
Marsha Rosengarten, Martin Savransky
This article takes up biomedical and public health concerns about the difficulty of generalizing or extrapolating measurements of efficacy produced by the method of the randomized control trial (RCT) to wider populations. While explanations for the difficulty may be deduced from social studies of science that reveal the contingent and situated nature of trial findings, new conceptual tools are required to allow for the practical value associated with the possibility of their extrapolation. We argue that Alfred North Whitehead’s concept of ‘abstraction’ can provide an alternative appreciation of some key aspects of the processes of knowledge-production of RCTs to enable a recasting of the problem of generalization. By proposing that generalization depends on relevant abstractions, we direct attention to the situated forms of care that this calls for. After showing the conceptual difference that the process of abstraction makes for understanding and extrapolating the situated nature of a research finding, we offer an interpretation of possible forms of care at work in efforts to devise Ebola adaptive trials. The example is offered as one possible basis for a reformulation of the logic of generalization.
Why we run when the doctor comes: Orang Asli responses to health systems in transition in Malaysia
Young Soon Wong, Pascale Allotey, Daniel D Reidpath
Globally, indigenous peoples live with stark disparities in health when compared with national populations. The disparities arise from a combination of factors that relate to the social and economic determinants of health, combined with disenfranchisement, and a rapid destruction of indigenous health systems, forests, natural resources and indigenous knowledge. In Malaysia, the indigenous peoples, known as the Orang Asli or ‘Original People’, are often viewed by authorities as ‘backward, ignorant and resistant to modern health services’, and therefore responsible for their poor state of health. This view situates the problem in the indigenous community, with the state as the benevolent provider of progress and improvement including health services. Orang Asli responses to this benevolence ranges from pragmatism to resignation to resistance. Drawing on a two-year ethnographic study, this paper explores, from the perspective of the Orang Asli, the dynamics of state and non-state societies, the structure and role of indigenous health systems and the effects of socio-economic transition in shaping Orang Asli responses to modern health services. Already burdened with poorer health compared with the national population, there is a growing problem of non-communicable diseases among the Orang Asli. Addressing this will require a shift from the benevolent dependency-creating approach commonly adopted by state public health services to one that is inclusive, responsive and participatory.
State of intervention: community stakeholder discourse on teen childbearing in Iowa
Andrea M. Weare, Tammy J. Walkner, Melissa Tully
The state of teen childbearing in Iowa (USA) is positioned by community leaders as a discursive battleground for intervention. In 2015 meetings with community stakeholders, participants framed ‘culture’ (which they defined as ethnicity and religion) as a barrier in decreasing the state’s teen pregnancy rate and increasing girls’ economic self-sufficiency. The childbearing teen body was, unsurprisingly, portrayed as a public health problem in need of organizational intervention. But how participants linked ‘culture’ to neoliberal ideals was surprising and specific. Utilizing McRobbie’s concept of the ‘real self’ and Foucault’s explication of governmentality, this study draws out the role of neoliberal self-sufficiency in grooming teens to perform adolescent femininity and self-govern. In doing so, it considers community stakeholders’ meaning-making processes. Findings show the interventionist discourse does more than attempt to prevent early pregnancy: it reinforces acceptable and unacceptable pregnant bodies and compels community leaders and practitioners to govern childbearing teen bodies in precise ways.
Temporalities of emergency: Migrant pregnancy and healthcare networks in Southern European borderlands
Grotti Vanessa, Malakasis Cynthia, Quagliariello Chiara, Sahraoui Nina
In Greece, Italy, and Spain, austerity policies combined with the structural density of migration flows have had concrete social and material manifestations in the delivery of public health care. Through our ethnographic case studies in Lampedusa and southeastern Sicily, Melilla, and Athens, we examine the maternity care offered to migrant patients in the midst and the aftermath of the so-called “migration crisis” in state and non-state structures. Research was conducted in Athens and southeastern Sicily from August 2016 to August 2017; in Melilla from August 2016 to October 2016 and in January 2017; and in Lampedusa from August 2016 to January 2017. Data collected consist in semi-structured interviews and long-term ethnographic observations. The article explores whether and how the understanding or the labeling of the maternity care of migrants as an emergency within a context of professed crisis generates new norms of care within health-care delivery. Our findings suggest a) the adoption of solutions or practices that in the past might have been considered urgent, ad hoc, or creative; b) their normalization, deeply connected to the wider social landscape of these European peripheries and c) the institutionalization of humanitarianism in the context of these practices. Our research points out temporalities of emergency against the background of a professed migration crisis. In the context of austerity-driven underfunding, temporary solutions become entrenched, producing a lasting emergency. Yet, we argue that “emergency” can, at some point, generate practices of resistance that undermine, subtly yet significantly, its own normalization.
Persuasive bodies: Testimonies of deep brain stimulation and Parkinson’s on YouTube
John Gardner, Narelle Warren, Courtney Addison, Gabby Samuel
Contemporary publics actively engage with diverse forms of media when seeking health-related information. The hugely popular digital media platform YouTube has become one means by which people share their experiences of healthcare. In this paper, we examine amateur YouTube videos featuring people receiving Deep Brain Stimulation (DBS) for the treatment of Parkinson’s disease. DBS has become a widely implemented treatment, and it is surrounded by high expectations that can create difficulty for clinicians, patients and their families. We examine how DBS, Parkinson’s disease, and DBS recipients themselves, are delineated within these YouTube videos. The videos, we demonstrate, contain common compositional and stylistic elements that collectively represent DBS as a technological fix, and which accentuate the autonomy of the DBS recipient. The relational, interpersonal dimensions of chronic illness, and the complex impact of DBS on family dynamics, are elided. We therefore shed light on the means by which high expectations regarding DBS are sustained and circulated, and more generally, we illustrate how potentially powerful representations of medical technologies can emerge from the intersection of social media platforms, afflicted bodies and patient narratives.
Understanding and preventing situations of abuse in health care – Navigation work in a Swedish palliative care setting
Jelmer Brüggemann, Alma Persson, Barbro Wijma
In their everyday work, health professionals find themselves in situations that they perceive to be abusive to patients. Such situations can trigger feelings of shame and guilt, making efforts to address the problem among colleagues a challenge. This article analyzes how health professionals conceptualize abusive situations, and how they develop collective learning and explore preventive strategies. It is based on an interactive research collaboration with a hospice and palliative care clinic in Sweden during 2016–2017. The empirical material consists of group discussions and participant observations collected during interactive drama workshops for all clinic staff. Based on three types of challenges in the material, identified through thematic analysis, we establish the concept of navigation work to show how health professionals prevent or find ways out of challenging and potentially abusive situations. First, the navigation of care landscapes shows how staff navigate the different territories of the home and the ward, reflecting how spatial settings construct the scope of care and what professionals consider to be potentially abusive situations. Second, the negotiation of collective navigations addresses the professionals’ shared efforts to protect patients through the use of physical and relational boundaries, or mediating disrupted relationships. Third, the navigation of tensions in care highlights professionals’ strategies in the confined action space between coercing and neglecting patients who oppose necessary care procedures. Theoretically, the concept of navigation work draws upon work on care in practice, and sheds light on the particular kind of work care professionals do, and reflect on doing, in order to navigate the challenges of potentially abusive situations. By providing a perspective and shared vocabulary, the concept may also elicit ways in which this work can be verbalized, shared, and developed in clinical practice.
Exploring the meaning of pro-vaccine activism across two countries
While vaccine-critical activism has been widely documented and discussed, comparatively little has been said about the concerted response of pro-vaccine activists defending the majority view. This paper explores two case studies of pro-vaccine activism in Australia and the United States (US). It shows how pro-vaccine views and behaviours can take varying forms due to different aims and methods of engagement – oppositional counteractivities in favour of vaccination in Australia, and issue-based advocacy as part of a political alliance in the US. The focus in Australia comes from a pro-science stance and includes ‘skeptics’ against pseudoscience directly opposing vaccine-critical groups. In the US, the focus takes the form of an issue-specific campaign that has arisen from existing pro-vaccine parent blogs and discussion groups pushing for policy change rather than public confrontation. These case studies exemplify how pro-vaccine activism can take varying forms of either reinforcing the mainstream view or countering digression from it. Drawing on qualitative research, this paper aims to examine the types of practices and strategies employed by activists to voice their support of vaccination, and discusses the means, messages, and motivations of pro-vaccine activism. It ends with an argument for why a study – of public support for in addition to studying public opposition to vaccination – can help to better understand vaccination views and behaviours. These findings have wider implications for the study of counter-activism and the polarisation of civil society groups.
Routine administration of the sexual assault medical forensic exam (commonly known as the “rape kit”) is one of the most significant healthcare reforms advanced by the U.S. anti-rape movement since the 1970s. To promote reform, nurses acted as practitioner-activists in emergency medicine and created the new specialty of forensic nursing to administer the medical forensic exam independent of physicians. Their efforts suggest a new way of conceptualizing the interface of law and medicine: the proactive invocation of criminal law in clinical medicine for the purpose of institutional reform in healthcare organizations, or what I term legal mobilization in medicine. Using the framework of legal mobilization in medicine, I ask: (1) how did nurses mobilize criminal law and rights to health in emergency medicine to facilitate reform? and (2) what were the effects on clinical practice and knowledge production? To chart this history, I draw on a review of published writings by early forensic nurses, interviews with leaders in the field, and ethnographic observation at the 20th anniversary International Association of Forensic Nurses conference in 2012, commemorating the founders and origins of this new specialty. Bringing together scholarship on law and social movements in socio-legal studies and scholarship on health and social movements in science, technology, and medicine studies, I argue that nurses forged a porous boundary between the overlapping institutional spheres of medicine and law in order to align the objectives of medical care and criminal investigation and, thereby, seek rights to healthcare and rights to justice for patient-victims through the enactment of new medical routines. I demonstrate the historical emergence of a novel, hybrid form of professional jurisdiction and medical practice, and I explore its benefits as well as its unintended consequences. I conclude by discussing the ethical implications of this case for the use of medical evidence to corroborate rape.
How to be a very safe maternity unit: An ethnographic study
Elisa G.Liberati, Carolyn Tarrant, Janet Willars, Tim Draycott, Cathy Winter, Sarah Chew, Mary Dixon-Woods
Maternity care continues to be associated with avoidable harm that can result in serious disability and profound anguish for women, their children, and their families, and in high costs for healthcare systems. As in other areas of healthcare, improvement efforts have typically focused either on implementing and evaluating specific interventions, or on identifying the contextual features that may be generative of safety (e.g. structures, processes, behaviour, practices, and values), but the dialogue between these two approaches has remained limited. In this article, we report a positive deviance case study of a high-performing UK maternity unit to examine how it achieved and sustained excellent safety outcomes. Based on 143h of ethnographic observations in the maternity unit, 12 semi-structured interviews, and two focus groups with staff, we identified six mechanisms that appeared to be important for safety: collective competence; insistence on technical proficiency; monitoring, coordination, and distributed cognition; clearly articulated and constantly reinforced standards of practice, behaviour, and ethics; monitoring multiple sources of intelligence about the unit’s state of safety; and a highly intentional approach to safety and improvement. These mechanisms were nurtured and sustained through both a specific intervention (known as the PROMPT programme) and, importantly, the unit’s contextual features: intervention and context shaped each other in both direct and indirect ways. The mechanisms were also influenced by the unit’s structural conditions, such as staffing levels and physical environment. This study enhances understanding of what makes a maternity unit safe, paving the way for better design of improvement approaches. It also advances the debate on quality and safety improvement by offering a theoretically and empirically grounded analysis of the interplay between interventions and context of implementation.
Equality, efficiency and effectiveness: going beyond RCTs in A. L. Cochrane’s vision of health care
Susanna Trnka & Tereza Stöckelová
A. L. Cochrane’s Effectiveness and Efficiency frequently appears as a key reference in debates over, and a justification for, contemporary evidence-based medicine. Cochrane’s concern in this text with the equality of care as the ultimate rationale for why effectiveness and efficiency of cure are needed has, however, largely disappeared from debate. In this article, we reconsider Cochrane’s approach through the use of case studies of plural forms of medicine in the Czech Republic, namely traditional Chinese medicine, homeopathy and spa care. In addition to bringing equality back into the picture, we also identify four expansions to Cochrane’s original vision arising from the difficulties of separating cure from care; the overlap between prevention and cure; the complex actions of some multi-faceted therapies; and recent reconceptualisations of the placebo effect. In conclusion, we suggest that instead of the widely used strictly vertical “evidence pyramid”, a descriptor of the horizontal and additive ordering of evidence might be more appropriate. We also argue that in healthcare systems characterised by a multiplicity of approaches, if we want to truly benefit from this heterogeneity, we must take seriously each medical tradition’s approaches to prevention, cure, care, as well as efficiency, efficacy and equality.
Medicalisation, pharmaceuticalisation, or both? Exploring the medical management of sleeplessness as insomnia
Catherine Coveney, Simon J. Williams, Jonathan Gabe
In this paper we examine the medical management of sleeplessness as ‘insomnia’, through the eyes of general practitioners (GPs) and sleep experts in Britain. Three key themes were evident in the data. These related to (i) institutional issues around advocacy and training in sleep medicine (ii) conceptual issues in the diagnosis of insomnia (iii) and how these played out in terms of treatment issues. As a result, the bulk of medical management occurred at the primary rather than secondary care level. These issues are then reflected on in terms of the light they shed on relations between the medicalisation and the pharmaceuticalisation of sleeplessness as insomnia. Sleeplessness, we suggest, is only partially and problematically medicalised as insomnia to date at the conceptual, institutional and interactional levels owing to the foregoing factors. Much of this moreover, on closer inspection, is arguably better captured through recourse to pharmaceuticalisation, including countervailing moves and downward regulatory pressures which suggest a possible degree of depharmaceuticalisation in future, at least as far prescription hypnotics are concerned. Pharmaceuticalisation therefore, we conclude, has distinct analytical value in directing our attention, in this particular case, to important dynamics occurring within if not beyond the medicalisation of sleeplessness as insomnia.