Many thought-provoking items in the journals this month, from interesting articles, to two photo essay in Medicine Anthropology Theory. Enjoy!
This article is an ethnographic study of emergent discourses, practices, and institutions focused on mental health and psychotherapy in Uganda. It compares the recent rise of a psy-dispositif in two very different settings: postwar northern Uganda, which has become a hub for international trauma interventions, and Kampala, the capital, where a small group of Ugandan psychotherapists has established a number of private practices, which mainly cater to the (upper) middle classes. The article investigates the meanings of happiness and suffering in these different contexts and asks who seeks psychotherapy and why. It shows how in the context of novel discourses on mental health, and related to changing lifestyles and images of the self, new struggles to be happy are taking place, albeit in very class- and place-specific ways. Consequently, unhappiness and psychosocial suffering are becoming reasons for seeking therapy, at least for some. Such a medicalization of unhappiness, manifested most prominently in the popular idiom of depression, reflects a global trend and has led to the soaring consumption of antidepressants and rising popularity of psychotherapy, particularly in the United States. As such, this article seeks to make a contribution to recent anthropological debates on happiness, suffering, and global mental health.
In this article, I trace the most salient features of Mexican families’ complex journeys as they coped with the “predicament” of childhood deafness. Framing support seeking through the theoretical lens of pilgrimage brings into focus family introspection and captures their tenacity while facing culture-specific obstacles. Ultimately, families realized their quests were not about “fixing” their children’s hearing, but finding more reliable communication in sign language. Pilgrimage, as a metaphor for the journeys described by participants, helps us understand families’ realizations that the biomedical options most commonly available in Mexico City were of limited efficacy, and reveals collective desire for alternatives to these options.
Puerto Rico’s politically liminal status as a US territory has dire consequences for Puerto Rico’s economy: the island does not receive the same funding as states for health insurance. In addition, Puerto Rico’s unraveling health care system, coupled with the island’s high poverty rate and the medical brain drain, interact. I weave my research on depression into this article as an example of the ways in which political and economic factors aggravate disease.
Hannah S. Bell, Funmi Odumosu, Anna C. Martinez-Hume, Heather A. Howard & Linda M. Hunt
Racial/ethnic identity is contingent and arbitrary, yet it is commonly used to evaluate disease risk and treatment response. Drawing on open-ended interviews with patients and clinicians in two US clinics, we explore how racialized risk is conceptualized and how it impacts patient care and experience. We found that racial/ethnic risk was a common but poorly defined construct for both patients and clinicians, who intermingled concepts of genetics, biology, behavior, and culture, while disregarding historical or structural context. We argue that racializing risk embodies social power in marked and unmarked bodies, reinforcing inequality along racial lines and undermining equitable health care.
Using Thompson’s conceptualization of the moral economy, I describe how NHS activists in the UK utilize moral arguments to form alliances between different occupational groups, in a political battle against health care privatization, reflecting how a consciousness is being built upon solidarity and shared interests. In this context, professional duties of health care professionals are linked to the interests of all citizens. I explore how the deployment of professional ethics elides a moral hierarchy that may hinder the movement’s egalitarian potential.
Michelle Anne Parsons
Through the life of a global health project in a maternity hospital in Kabul, Afghanistan one indicator—intrapartum mortality—was taken to represent the quality of emergency obstetric care and was at the center of a struggle over project management. The indicator was also contested by Afghan clinicians, and so was adapted, in which process the relationship between the indicator and women’s lives outside the hospital was made clear. As the indicator faltered, new possibilities for intervention emerged, although these were not fully realized. Global health governance and financing must be flexible enough to respond when indicators falter.
Asha Persson, Angela Kelly-Hanku, Stephen Bell, Agnes Mek, Heather Worth & Richard Nake Trumb
The global ambition to “end AIDS” hinges on the universal uptake of HIV treatment-as-prevention and is undergirded by the assumption that biomedical technologies have consistent, predictable effects across highly diverse settings. But as anthropologists argue, such technologies are actively transformed by their local encounters, with various constitutive effects. How priority populations, such as HIV “serodiscordant” couples, negotiate treatment-as-prevention remains relatively unknown. We consider the “vibrant entanglements” that can shape couples’ engagement with global biomedical technologies in the local context of Papua New Guinea (PNG)—a relatively uncharted biomedical landscape—and what we hope our current research in this setting will achieve.
Analyzing interviews with 20 Jewish-Israeli gestational surrogates who gave birth in 2014–2016, I examine the common narrative structure of their personal stories and the way that this becomes what Adichie calls a “single story”. This idealized, romanticized, utopian story includes: 1. an intimate bond between surrogate and intended parents; 2. an epic birth; 3. a happy ending, told publicly. After illustrating this structure, I present the consequences of this single story for surrogates whose experiences diverged from, yet were constantly compared to, the “perfect journey” narrative. Anthropologists of reproduction must pay careful attention to digital storytelling as a new reproductive technology.
Amy E. Snively-Martinez
Widespread use of antibiotics is of concern due to the selection for resistant bacterial strains, which render life-saving antimicrobials ineffective. Smallholders in rural Guatemala rely on human antibiotics to treat their poultry, and in this article, I aim to understand why they do so. I incorporate Ethnographic Decision Modeling (EDM) to understand treatment behaviors. Results indicate that access and affordability in opportunity costs are barriers to seeking veterinary medicines for poultry. Access to veterinary medicine and education campaigns on poultry health are necessary to support the appropriate use of antimicrobials for backyard poultry.
Medicine Anthropology Theory (Open Access)
This article examines an ethical controversy that has received relatively little attention in public debates about the legalization of medical aid-in-dying (AID): should physicians inform patients that they have the option of hastening death? Drawing on ethnographic research about the implementation of AID in Vermont, I argue that how we understand the moral stakes of this debate depends on divergent views regarding language use in social interactions. Some stakeholders in this debate view a physician’s words as powerful enough to damage the patient-physician relationship or to influence a patient to hasten her death, while others believe that merely informing patients about AID cannot move them to act against their own values and preferences. I illustrate how these divergent perspectives are tied to competing language ideologies regarding clinical disclosure, which I call ‘disclosure ideologies’. My analysis of these two disclosure ideologies surrounding AID highlights disclosure practices in medicine as a rich site for medical anthropological theorizing on linguistic performativity and the social power of clinical language.
The relationship between public health practice and the fulfilment of the right to health is often assumed to be synergistic. With the goal of understanding how exactly this relationship happens, I studied the everyday practice of epidemiology in Guatemala, seeking to understand how it shapes and is shaped by the notion of health as a human right. Here I present findings from my ethnographic investigation of the Guatemalan Centro Nacional de Epidemiología (National Epidemiology Center), created in 2004 with the explicit mission of contributing to fulfilling the right to health for the inhabitants of Guatemala. While the relationship between epidemiological practice and the right to health is influenced by the specific configuration of local and transnational flows (bureaucratic, economic, ideological, political, scientific, social, and symbolic), epidemiologists also play an important mediating role. There are four intermediate social mechanisms that shape the relevance of epidemiological practice to fulfilling the right to health in Guatemala. Given how the country’s economic and social inequalities translate into enormous health inequities, an epidemiological practice committed to the right to health should aspire to transform, rather than reproduce, the social hierarchies underlying such inequalities. The mechanisms I identified shape how epidemiological practice contributes to the reproduction or transformation of such hierarchies. These mechanisms shape what I call ‘neocolonial epidemiology’, and include: institutional chaos, disciplinary conformism, global health international relations, and social relations at the national level.
In this article, I use classical anthropological and sociological theory on exchange to explain the robustness of the cultural economy of healing in Northern Ghana. While many scholars have argued that health care in Africa should be understood through the lens of neoliberal marketization, ethnographic research among Mamprusi healers shows that practices of traditional healing are firmly embedded in a cultural system of exchange. Although confronted with an expanding monetary economy, the healers adhere to the local credo that ‘money spoils the medicine’. This alludes to an approach to healing characterized by a kind of reciprocity that reflects (post-)Maussian principles of gift exchange. Drawing on these principles, I propose to complement our understanding of exchange with the concept of ‘moral monies’. As peculiar monetary (counter)gifts, these serve as instruments to reconcile contemporary monetary needs with the sociocultural, moral, and historical institutions in which traditional health care is rooted.
Jillian Moore, Caitlin Baird, Peter Rohloff
In response to the rising rate of end-stage renal disease (ESRD) in Guatemala, the public health system established a national community-based dialysis program to enable people living in rural areas to complete treatment in their homes. Here we explore how this newly available, life-prolonging technology has altered local worlds by transforming ESRD from an acute, life-ending illness into a managed chronic condition with an uncertain trajectory. Through case studies, we describe how living with dialysis influences family relations and caregiving in rural Guatemala. We find that dialysis interacts with an insufficient health care system, one that avoids life-ending complications but does not sufficiently manage life-altering symptoms. In addition, the need to care for people with ESRD for an uncertain amount of time may disrupt and strain family-based caregiving networks. Amid this meager health and social welfare infrastructure, life on dialysis exacerbates the chronic insecurity and structural inequality of life in postwar Guatemala. As both life and illness are prolonged through dialysis, the unceasing demands of the treatment and illness strain the webs of obligation and care that Guatemalan families and communities have developed to adapt to their decentralized and fragmented public health care system.
The global burden of mortality and morbidity attributable to noncommunicable diseases (NCDs) now exceeds that of infectious disease. Yet, concern is mounting that global political prioritisation and action have stalled. The failure of NCDs to capture public and political imaginations has been ascribed to a number of reasons, with some recently contending that the very name of the disease classification is to blame. In this piece, I reflect critically on why discourse about NCDs has not compelled global action proportionate to the magnitude of the suffering these diseases cause. Failure to act on NCDs, I argue, is not a failure of terminology alone.
Jerome W. Crowder, Winston P. Crowder
[Excerpt] While studying anthropology in graduate school I never thought about how the skills I learned as an ethnographer would prepare me for understanding and processing my father Winston’s multiple chronic illnesses, advocating for him, and facilitating his eventual passing. The decades of living, observing, and working intimately with families in Bolivia and Perú helped me recognize those significant moments in life that we witness and then relive in our memories. As a professor teaching ethics and humanities courses to medical students in the United States, I became acutely aware of the acculturation of biomedicine and the priorities it places on saving lives. At seventy, when Dad’s congestive heart failure manifested to a level that he needed intervention and received his implantable cardioverter defibrillator (ICD),[note 1] I began to consider my own family’s health care as a subject to observe and document.
[Excerpt] In the 1960s George Foster, a founding figure in medical anthropology, theorized that Indigenous communities adhered to the ‘Image of the Limited Good.” Accordingly, good things in life were limited, with the effect that one person’s good came at a cost to another. This photo essay challenges the Image of the Limited Good. I suggest that the people who spread this idea are not Indigenous but upper class and White politicians who deploy the idea of limits to bolster their racist agendas. I juxtapose the deaths of Indigenous children at the US border with the kindness my children encountered in Guatemala to illustrate how experiences are structured by racism, not limits. The essay concludes by asking what we can learn from Indigenous parents about how to replace the Image of the Limited Good with an Image of Abundance.
Health literacy has become a hot topic in health research and public health promotion. Most definitions specify health literacy as an individual cognitive skill, and surveys such as the EU-HLS which ask people to self-rate their decision-making capacity in the health system, grade a majority of the population as having an inadequate health literacy. Inspired by a praxeological understanding of knowledge and based on an empirical study on welfare bricolage in superdiverse urban neighborhoods, this paper explores health literacy ethnographically and highlights people’s knowledge, creative practices and experiences concerning health and healthcare. It draws on 42 semi-structured interviews conducted with a highly diverse sample of residents in Bremen, Germany, between September 2015 and April 2017. The interviews were analyzed with the help of collaborative systematic thematic analysis. The findings question the individualistic and rationalistic bias of conventional approaches to health literacy and suggest that health literacy as a social practice is situational, multidimensional – comprised of different sources and forms of knowledge – and co-produced in social relations. This reformulation of the concept suggests that future research on health literacy should adopt a resource-oriented approach and embrace the rich variety of health knowledge practices.
Susan E. Bell
US hospitals have developed a variety of strategies to meet federal requirements and provide culturally and linguistically appropriate health care for people who report limited English proficiency. A key strategy is the use of healthcare interpreters who may be physically present in the room or in the room via telephone or video conference. This paper analyzes the contingent and unstable combinations of heterogeneous human and nonhuman elements that form and disperse during visits to the hospital when healthcare interpreters are used. It draws its analysis from 9 months of fieldwork in 2012 that included following 69 adult immigrant and refugee patients in one hospital in Maine and observing encounters with interpreters and clinic staff. It introduces the concept of interpreter assemblage to make sense of the transnational mixes of people, technologies, and ideas that bring multilingual hospital care to life and give it a character of its own.
Gavin J. Andrews, Cameron Duff
In recent years much health research across the social sciences and humanities has undergone a noticeable, albeit by no means cohesive or comprehensive, ‘turn’ towards a posthumanist theoretical orientation. This paper reviews the radical ideas about health’s emergence that have accompanied this turn, noting the core processes that are understood to always be in play. In particular, while acknowledging that not all humanistic ideas have been rejected in this work, it describes how some have been reworked and extended in ‘other-than-fully conscious’ and ‘more-than-human’ terms. The paper assesses and synthesizes this diverse literature, emphasising the novel understandings of corporeality, materiality, assemblage, relationality, vitality and affect that have become distinctive features of it.
stef m. shuster
Using in-depth interviews with 23 physical and mental healthcare providers and observations at transgender-specific healthcare conferences between 2012 and 2015, I examine how medical providers negotiate informed consent processes in their clinical encounters with trans patients. While a growing body of scholarship has examined informed consent in scientific research from the patient’s perspective, a gap remains in how informed consent is understood in clinical encounters, and from providers’ perspectives. I use the case of trans medicine, an emergent field of medicine that has not yet implemented standardized procedures or policies that shape providers’ decision-making. I demonstrate how many providers of trans medicine give voice to following informed consent, but fail to actually practice it in their work with trans patients. In performing informed consent, providers revert to a paternalistic model of care, which amplifies their medical authority while veiling power differentials in their clinical encounters and decision-making in trans medicine.
Alexandra Kaley, Chris Hatton, Christine Milligan
Since Wil Gesler’s earliest articulation (Gesler, 1992; Gesler, 1996) key thinkers in the field of therapeutic landscapes have sought to emphasise the embodied, contextual and wholly relational nature of the relationship that exists between people and place. However, the extant research has tended to focus on the relational healing experience as this occurs ‘in the moment’ and with reference to a specific location or site of healing, with less attention being paid to what happens to people when they return to their ordinary or everyday places. In this paper, we reflect on findings from visual ethnographic work (including photography and film) that explored the therapeutic landscape experiences of people with intellectual disabilities engaged in care farming interventions for health and wellbeing. The study also recruited farm staff and family members or carers to take part, and comprised 20 participants in total. Having identified a gap in our understanding, consideration is given to wider impact that engaging in these sorts of activities had on the everyday lives of the participants in this study. We argue that this study has identified two types of therapeutic journey that broadly fit the experiences of study participants. The first type of journey denotes landscape experiences that are transformative. Here the therapeutic power of the care farm landscape resides in the ability of activities conducted on care farms to influence other aspects of participants’ lives in ways that promote wellbeing. By contrast, there is another type of journey where the therapeutic power of the care farm resides in its ability to ameliorate challenging or harmful life situations, thus offering people a temporary site of respite or refuge. We conclude that these findings denote an important development for this sub-field of health geography, not only because they draw attention to the transformative power of the therapeutic encounter, but also the broader socio-spatial environments in which people live and ways in which these can limit that power.
In this article, I examine how a subfield of researchers studying the impact of poverty and adversity on the developing brain, cognitive abilities and mental health respond to criticism that their research is racist and eugenicist, and implies that affected children are broken on a biological level. My interviewees use a number of strategies to respond to these resurfacing criticisms. They maintain that the controversy rests upon a fundamental misunderstanding of their work. In addition, they use what I term ‘plasticity talk’, a form of anti-determinist discourse, to put forth what they believe is a hopeful conception of body and brain as fundamentally malleable. They draw attention to their explicit intentions to use scientific inquiry to mitigate inequality and further social justice – in fact, they believe their studies are powerful evidence that add to the literature on the social determinants of health. Though they may be interested in improving lives, they argue that their aims and means have little in common with programs trying to ‘improve’ the genetic stock of the population. I argue that theirs is a fraught research terrain, where any claims-making is potentially treacherous. Just as their studies of development refuse dualistic models, so too do their responses defy dichotomous categorization
Alexandra Hillman, Joanna Latimer
This article examines the strategies by which the different and variable signs of failing mental powers become known sufficiently for ‘dementia’ to be made into a stable bio-clinical entity, that can be tested, diagnosed and perhaps one day even treated. Drawing on data from ethnographic observations in memory clinics, together with interviews with associated scientists and clinicians, we document the challenges that clinicians face across the clinical and research domain in making dementia a stable object of their investigation. We illustrate how the pressure for early diagnoses of dementia creates tensions between the scientific representations of early dementia and its diagnosis in the clinic. Our aim is to highlight the extent to which the work of diagnosing dementia involves an intricate process of smoothing out seemingly insurmountable problems, such as the notoriously elusive connections between brain/mind and body/person. Furthermore, we show that a part of this process involves enrolling patients as minded, agentic subjects, the very subjects who are excluded from dementia science research in pursuit of biomarkers for the pre-clinical detection of dementia.
Julia Swallow, Alexandra Hillman
This paper contributes to the growing recognition in Science and Technology Studies and medical sociology of the significant role of affect in scientific and clinical work. We show how feelings of fear and anxiety associated with dementia not only shape people’s experiences and responses to a diagnosis, but also shape the practices and processes through which assessments and diagnoses are accomplished. What emerges from our research, and provides a distinct contribution to this growing field of study, is the relationship between the uncertainties that pervade the diagnosis of memory problems and the various strategies and practices employed to care for, divert, restrict or manage affective relations. Furthermore, our ethnographic material illustrates the implications of this relationship: on the one hand, it provides opportunities for care work through ‘tinkering’ with diagnostic technologies and extending and opening out diagnostic categories, while on the other, it can form part of healthcare practitioners’ disposal work, restricting opportunities for alternative meanings of dementia to endure.
Andrea M Bertotti, Skye A Miner
Using critical discourse analysis, we examine how seven popular gynecology textbooks use sociolinguistic devices to describe the health effects of pharma-contraception (intrauterine and hormonal methods). Though previous studies have noted that textbooks generally use neutral language, we find that gynecology textbooks differentially deployed linguistic devices, framing pharma-contraceptive benefits as certain and risks as doubtful. These discursive strategies transform pharma-contraceptive safety into fact. We expand on Latour and Woolgar’s concept of noncontentious facts by showing how some facts that are taken for granted by the medical community still require discursive fortification to counter potential negative accusations from outside the profession. We call these contentious facts. Our findings suggest that a pro-pharma orientation exists in gynecology textbooks, which may influence physicians’ understanding of pharmaceutical safety. As such, these texts may affect medical practice by normalizing pharma-contraceptives without full considerations of their risks.
Juveria Zaheer, Wes Shera, Wai Lun Alan Fung, Samuel Law, Paul S. Links
This qualitative study explored the experiences and patterns of recovery of Chinese-born women living in Canada with a history of suicidal behaviour. It explores a number of dimensions of recovery including clinical, existential, functional, physical, and social. The women described engaging in “survival” recovery in the short term and “thriving” recovery in the long term, with survival strategies extending into the thriving phase of recovery during their complex path to it. The survival recovery phase included accessing culturally sensitive mental health care and obtaining social and instrumental support to help ensure safety, manage stress, and treat psychiatric symptoms. The thriving phase of recovery was described as involving six components: developing an explanatory model with their health care provider; undertaking a process of narrative reflection and prioritizing self-care; engaging in interdisciplinary care team support; engaging the support of family and friends; exploring spiritual and existential supports; and creating goals for the future and a sense of mastery. Through these six avenues, the women began to experience a sense of self-efficacy and agency that improved their ability to cope with stress and pressure, leading to building a life with meaning. The interviews provided insights into how clinical care can be improved and how practitioners can implement a more recovery-oriented approach to practice.
Milena Pereira Pondé, Francesca Maria Niccoletta Bassi Arcand, Litza Andrade Cunha, Cécile Rousseau
This article describes how autism spectrum disorder is experienced in the context of immigrant families and how the meaning of this condition, proposed by professionals in the host country, is negotiated between families and healthcare providers. The study sample consists of 44 parents of different nationalities and their 35 children with autism spectrum disorder (ASD) living in a socioeconomically deprived neighborhood of Montreal, Canada. Individual parent interviews were audiotaped and transcribed for subsequent analysis. Results suggest that – although they may sometimes be a source of anxiety – the uncertainties regarding the etiology of ASD, as well as the gap between the explanatory models (EMs) proposed by host country professionals and the impressions of parents, seem to increase the capacity of families to resist the imposition of what they perceive as external categories. Parents perceived the day-to-day difficulties associated with their child’s condition as a form of social exclusion that compromised their child’s future and independence. These day-to-day difficulties were also described as directly affecting the parents’ social life, constituting an important emotional and physical burden. When talking about their children, parents described the painfulness of their experiences, but also discussed how their autistic child had transformed and shaped their lives. Overall, these results show how the disease is “enacted” in the day-to-day life of parents; and suggest that such an embodied understanding of ASD may sometimes represent a form of re-appropriation of power by families faced with adversity.
Although children across the world experience autism spectrum disorder (ASD), most research on ASD has been conducted using Western cultural perspectives and has focused primarily on mothers, leaving significant gaps in the literature. This study aimed to address these gaps by exploring the experiences of fathers raising children with ASD in a Bedouin community. To this end, a sample of 19 fathers of children (aged 6–15 years) with ASD living in recognized and unrecognized Bedouin settlements in the Negev participated in ethnographic, semi-structured interviews designed to investigate their experiences with raising a child with ASD in their community. Two major themes emerged: the challenges that Bedouin fathers of children with ASD face, and the influence of socio-demographic and cultural characteristics on their experience. Findings reflect the complex experiences of fathers raising children with ASD in the Bedouin community, stemming from their socio-cultural context and the limited knowledge and support services that are available in the community for these children. This article concludes with recommendations on how to enhance professional sensitivity and provide more culturally tailored services for parents of children with ASD.
Opponents of abortion in the United States have long made strategic comparisons between abortion and slavery to advance their movement. Within the past two decades, a White‐led branch of the American “pro‐life” movement began invoking racial categories and movements for racial justice to advocate for the socio‐legal recognition of frozen embryos as persons. Extending from ethnographic research with proponents of “embryo personhood,” this article examines three examples of personhood advocacy—a lawsuit, promotional video, and legislative bill—that instrumentalize race through strategic comparisons between embryos and Black Americans, and personhood advocates and racial justice leaders. More than misleading comparisons, invoking race in personhood advocacy underscores this radical movement’s threat to reproductive and racial justice. Antiabortion politics of recognition present another durable link between racial and reproductive politics in the United States.
Jada Benn Torres
Understanding of human genetic variation has grown significantly in the twenty‐first century but has not been adequately incorporated into anti‐racist anthropological perspectives. Research into the underlying structure of human disease suggests that common diseases may be caused by rare genetic variants. These variants tend to be specific to populations that are oftentimes racially defined. Consequently, genetic studies that seek to identify disease‐causing rare variants rely upon racialized frameworks. Despite social scientific perspectives that endorse a nonbiological basis to race, within biomedicine, biological uses of race remain entrenched due to their utility for identifying the causes of the disease. Anthropologists must be responsive to these utilizations of race or risk irrelevance in shaping how researchers understand and use human variation. Through critique and careful incorporation of new knowledge about the nature of human genetic variation into anthropological perspectives, anthropologists can continue to make meaningful contributions to understanding the relationship between biology and race.