Among the central themes of the eclectic field of mad studies is a critique of psychiatric authority. Activists and academics, from a range of positions and perspectives, have questioned psychiatry’s normalizing impulses and have privileged mad-identified knowledges over expert ones. One of the most successful assaults on psychiatric authority was launched by gay activists in the 1960s and early 1970s, resulting in the removal of homosexuality from the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. But if that event marked an inspirational victory against psychiatric power, it was also, as Robert McRuer notes, “a distancing from disability.”1Revisiting this history through analytic lenses offered by disability and mad studies defamiliarizes familiar historical narratives and unsettles the critique of psychiatric authority, especially when countered by claims to health.
Immunity, Modernity, and the Biopolitics of Vaccination Resistance
Bernice L. Hausman
Conflicts over the value, meaning, and efficacy of vaccination as a preventive practice suggest that vaccination resistance stages disagreement within modern biological citizenship. This paper explores how immunity circulates in both vaccination controversy and biopolitical philosophies. Two positions—one characterized by somatic individualism, flexible bodies, reflexive approaches to knowledge, and the idea of the immune system as “the essential relation the body has with its vulnerability,” and another characterized by the immunitary paradigm, biosecurity, trust in expert systems, and vaccination—emerge. Understanding that oppositional relation can reframe public understanding of vaccine skepticism and public health responses to it.
Greg Bird and Jon Short
In the following paper, we draw from Roberto Esposito’s and Donna Haraway’s theories of immunity to examine immigration apparatuses. The immunization perspective provides new ways of examining how immigration apparatuses function. In particular, we explore how they serve the purpose of biologically and culturally immunizing a nation from being contaminated by “dangerous” populations. We begin by briefly outlining Esposito’s and Haraway’s theories of immunity. Then for the remainder of the paper we provide a genealogical sketch of the demographics of immunization in Canadian immigration policies. In the Canadian case, there are two stages of immunization that roughly correspond to Esposito’s historical account of the development of immunization apparatuses. First, we explore what we call the “crude immunization stage” (1867–1967), where various discriminatory criteria and measures were erected to safeguard the nation from being contaminated by populations designated as “dangerous.” The second “sophisticated immunization stage” began when Canada adopted a more liberal notion of multiculturalism (1967–present). Despite making substantial changes to immigration policies in the late 1960s, which were supposed to drop all discriminatory criteria on the basis of race, ethnicity, or national origin, we demonstrate how the same categories were reasserted by streaming potential (im)migrants into two pools: valuable, high-skilled immigrant workers and disposable, low-skilled migrant laborers. In this second stage, Canada has increasingly relied upon “guest” workers over permanent immigrants to supply its labor market. This distinction between permanent immigrants and temporary migrants has become a new mechanism for discriminating on the basis of race, ethnicity, and national origin.
Mother protection, child survival: narrative perspectives on child mental health services underutilization
Melody J. Slashinski
In the United States, increased national attention has generated a wealth of public health and epidemiologic research examining disparities in African American children’s mental health services utilization. Research has not yet been extended to examining the social structural mechanisms that keep these disparities stable and in place. Drawing from a larger urban ethnographic field study exploring the ‘everyday’ of health and illness within and across African American families living in an inner city public housing community, in this article I document the narratives of four African American mothers to illustrate how social structural mechanisms shape their decisions to seek or not mental health services for their children. I frame mothers’ decisions in terms of everyday violence, drawing attention to the institutionalized injustices that are normalized and rendered invisible because of their routine pervasiveness. I conclude with a discussion of integrating structural interventions to modify or reduce disparities in African American children’s mental health services utilization.
Temporality and Positive Living in the Age of HIV/AIDS: A Multisited Ethnography
Adia Benton, Thurka Sangaramoorthy, and Ippolytos Kalofonos
Drawing on comparative ethnographic fieldwork conducted in urban Mozambique, the United States, and Sierra Leone, the article is broadly concerned with the globalization of temporal logics and how specific ideologies of time and temporality accompany health interventions, such as those for human immunodeficiency virus (HIV) infection and AIDS (HIV/AIDS). More specifically, we explore how HIV-positive individuals have been increasingly encouraged to pursue healthier and more fulfilling lives through a set of moral, physical, and social practices called “positive living” since the advent of antiretroviral therapies. We describe how positive living, a feature of HIV/AIDS programs throughout the world, has taken root across varied political, social, and economic contexts and how temporal rationalities, which have largely been underexamined in the HIV/AIDS literature, shape communities’ responses and interpretations of positive living. Our approach is ethnographic and comparative, with implications for how anthropologists might think about collaboration and its analytical possibilities.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
When Hansen’s disease became treatable in Taiwan in the mid-20th century, a group of Hansen’s disease patients lost their sick role despite still having lingering symptoms that continued to evolve. While sociologists have explored in-depth situations in which the social role of the sick is ambiguous, few studies have investigated body experiences under liminality that requires sick people to find a new sick role. Living with lingering symptoms in a post–Hansen’s disease world, the Hansen’s disease patients I have studied face the conundrum of having to find an alternative sick role. Ethnographic fieldwork demonstrates how patients develop a specific set of body techniques that shape and are shaped by their membership in a patient community. Exploring the reinforcing projects of re-embodiment and sociality around Hansen’s disease, I argue that patients are able both to legitimate each other’s feelings of sickness and to use those feelings to manage their illness and, as such, to collectively acquire an alternative sick role. Adding to existing discussions of active patients, this article identifies the body mechanical as a way of practicing active patienthood organized around fixing, trials, mending and functionality.
This article argues that rehabilitation enacts a particular understanding of “the human” throughout therapeutic assessment and treatment. Following Michel Callon and Vololona Rabeharisoa’s “Gino’s Lesson on Humanity,” we suggest that this is not simply a top-down process, but is cultivated in the application and response to biomedical frameworks of human ability, competence, and responsibility. The emergence of the human is at once a materially contingent, moral, and interpersonal process. We begin the article by outlining the basics of the actor–network theory that underpins “Gino’s Lesson on Humanity.” Next, we elucidate its central thesis regarding how disabled personhood emerges through actor–network interactions. Section “Learning Gino’s lesson” draws on two autobiographical examples, examining the emergence of humanity through rehabilitation, particularly assessment measures and the responses to them. We conclude by thinking about how rehabilitation and actor–network theory might take this lesson on humanity seriously.
This paper explores the relationship between health, the body and exercise through an examination of women’s running practices. Drawing on a series of original interviews with women it shows how running reflects anxieties about health and the unruly body and how running practices are firmly linked to ideas about body size and shape and to the ‘ghosts’ of potential, future illness. The paper then explores the ways in which running practices are shaped by attitudes to technology and by the relationship between nature, environment and the body.
The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families
Roberta L. Woodgate, Melanie Zurba, Marie Edwards, Jacquie D. Ripat, and Gina Rempel
This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the ‘embodied space of care’. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.
On doing ‘risk work’ in the context of successful outcomes: exploring how medication safety is brought into action through health professionals’ everyday working practices
Interest in risk has grown exponentially in healthcare, resulting in a plethora of policies and guidelines to manage risk at all levels across the healthcare system. However, the impact of risk on the nature and experiences of healthcare work remains a relatively neglected area of research on risk in healthcare. Building on the concept of ‘risk work’, in this article we examine how medication safety is brought into action through health professionals’ everyday working practices at the point of medication administration. Drawing on two closely related data sets, both generated in a large paediatric hospital providing secondary and tertiary care in England, we argue that medication-related risks are constructed and negotiated through situated social interactions. Frontline practitioners actively reconcile the logics of risk work and good-quality bedside patient care enabling them to get risk work done to successfully meet the formally established standards of quality and safety performance. ‘Risk work’ has the potential to make visible and explicit a range of risk-related practices that may not be acknowledged as such if they do not align with the established meanings of risk and the normative frameworks built around them. A focus on ‘risk work’ can bring in a new lens to the study of risk in healthcare with the potential to generate learning from how risk work gets done in the context of routine clinical practice and successful outcomes, rather than incidents and failures, in healthcare service provision.
Cycling injuries and the re-modernisation of mundane risks: from injury prevention to a population health and environmental problem
Commentators drawing on the concept of the Risk Society have argued that the proliferation of large-scale risks generates critical reflection on the modernistic logic and drives current societal changes. Critics have argued that this thesis neglects the centrality of mundane risks in shaping contemporary identities. However, such critics have not considered the dynamics of mundane risks and the possibility that these dynamics follow the predictions made by Risk Society theorists. In this article, I examine this issue using the recent history of cycling risk, focussing on expert knowledge in the Global North between 1970 and 2014. I draw on Actor–Network Theory to operationalise Risk Society, conceptualising accounts of cycling risk as the products of a dynamic network. I examine this network using scientometric analyses of scientific papers, analyses of influential texts and in-depth interviews with experts and activists. I argue that the dynamics of this network follow the predictions of Risk Society: bicycle helmets emerged as a technological fix for a specific risk, but are now described as the source of new risks to health and safety, due to their potential interactions with human psychologies and social behaviours. This encourages reflexivity on the conditions producing such risks, namely, the modernistic logic. Thus, mundane risks are both re-modernised and remain central to shaping identities and concerns. More specifically, the interaction between mundane risks and holistic conceptualisations of health is shown to contribute to the shift from first to second modernity.
Journal of the History of Medicine and Allied Sciences
“His Native, Hot Country”: Racial Science and Environment in Antebellum American Medical Thought
Relying on a close reading of more than 4,000 medicals student theses, this essay explores the evolving medical approaches to race and environment in the early national and antebellum United States and highlights the role that medical school pedagogy played in disseminating and elaborating racial theory. Specifically, it considers the influence of racial science on medical concepts of the relationship of bodies to climates. At their core, monogenesis—belief in a single, unified human race—and polygenesis—the belief that each race was created separately—were theories about the human body’s connections to the natural world. As polygenesis became influential in Atlantic medical thought, physicians saw environmental treatments as a matter of matching bodies to their natural ecology. In the first decades of the nineteenth century, Atlantic physicians understood bodies and places as in constant states of flux. Through proper treatment, people and environments could suffer either degradation or improvement. Practitioners saw African Americans and whites as the same species with their differences being largely superficial and produced by climate. However, by the 1830s and 1840s medical students were learning that each race was inherently different and unalterable by time or temperature. In this paradigm, medical students articulated a vision of racial health rooted in organic relationships between bodies and climates.
Eating in the Panopticon: Surveillance of Food and Weight before and after Bariatric Surgery
In this article, we explore the processes by which surveillance of eating and weight is coupled with popular and medical ideas about discipline, responsibility, and moral worth for individuals identified as fat/obese. We then follow these individuals through bariatric surgery and weight loss, paying attention to what discourses and practices shift and what remain unchanged. We argue that weight loss does not temper the intensity and constancy of surveillance, because it is at the core of ideas concerning good citizenship and personal responsibility. Accompanying judgments do shift, however, as the perceptions of failure at disciplined “healthy” eating associated with fatness give way to more diverse attitudes post surgery. This analysis also highlights the fact that public and clinical perceptions of “troubled eating” often rely not on eating practices but on the types of bodies that are doing the consuming.
“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy
Sarah Bernays, Sara Paparini, Janet Seeley, and Tim Rhodes
Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people’s perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US, and Uganda, embedded within the BREATHER international clinical trial. Drawing from Goffman’s notion of stigma, we analyze relational dynamics in HIV clinics, as rare spaces where HIV is “known,” and how young people’s relationships may be threatened by non-adherence to treatment. Young people’s reflections on and strategies for maintaining their reputation as patients raise questions about particular forms of medicalization of HIV and the moralization of treatment adherence that affect them, and how these may restrict opportunities for care across the epidemic.
Repellents and New “Spaces of Concern” in Global Health (open access)
Ann H. Kelly, Hermione N. Boko Koudakossi, and Sarah J. Moore
Today, malaria prevention hinges upon two domestic interventions: insecticide-treated bed nets and indoor residual spraying. As mosquitoes grow resistant to these tools, however, novel approaches to vector control have become a priority area of malaria research and development. Spatial repellency, a volumetric mode of action that seeks to reduce disease transmission by creating an atmosphere inimical to mosquitoes, represents one way forward. Drawing from research that sought to develop new repellent chemicals in conversation with users from sub-Saharan Africa and the United States, we consider the implications of a non-insecticidal paradigm of vector control for how we understand the political ecology of malaria.
Precarity and Preparedness: Non-Adherence as Institutional Work in Diagnosing and Treating Malaria in Uganda
Access to anti-malarial drugs is increasingly governed by novel regulation technologies like rapid diagnostic tests (RDTs). However, high rates of non-adherence particularly to negative RDT results have been reported, threatening the cost-effectiveness of the two interrelated goals of improving diagnosis and reducing the over-prescription of expensive anti-malarial drugs. Below I set out to reconstruct prior treatment forms like presumptive treatment of malaria by paying particular attention to their institutional groundings. I show how novel regulation technologies affect existing institutions of care and argue that the institutional work of presumptive treatment goes beyond the diagnosis and treatment of a currently observed fever episode. Instead, in contexts of precarity, through what I will call “practices of preparedness,” presumptive treatment includes a variety of practices, performances, temporalities, and opportunities that allow individuals to prepare for future episodes of fever.
Data Performativity, Performing Health Work: Malaria and Labor in Senegal
In this article, I investigate the ramifications of health data production in the health fight against malaria in and around Dakar, Senegal. Malaria health development funding at the community level is contingent on performativity; the Global Fund’s “performance-based funding,” for example, requires that local actors produce certain forms of evidence and that intermediaries synthesize this evidence into citable data. Analyzing the practices of diagnosis and approximation in health clinics and in global malaria documents, I argue that data production in Senegal is conditioned by and reifies preconceived notions of malaria as a problem addressable by the enumeration of technological fixes.
The Social Lives of Global Policies against Malaria: Conceptual Considerations, Past Experiences, and Current Issues
While a casual observer might easily get the impression that global policies against malaria have unanimous support, there are strongly divergent perspectives on malaria control. Analyzing ethnographic and historical material through a political science lens, I foreground the social negotiation of malaria both as an illness experience of affected populations and as a disease problem defined by experts. Taking the interrelationship between problems, solutions, and solution providers as a point of departure, I reconstruct recurrent tensions and social mechanisms that can account for the tendency to downplay conflicts and to produce technical–biomedical solutions that seem to be irresistible. This helps to overcome the perception that current policies have no alternatives and that aiming directly for malaria eradication is the only form of sustainability in times of resistances when “saving the established technical–biomedical solutions” has become a key concern.
Science, Technology, & Human Values
Erin A. Cech, Anneke Metz, Jessi L. Smith, and Karen deVries
Can epistemologies anchor processes of social inequality? In this paper, we consider how epistemological dominance in science, engineering, and health (SE&H) fields perpetuates disadvantages for students who enter higher education with alternative epistemologies. Drawing on in-depth interviews with Native American students enrolled at two US research universities who adhere to or revere indigenous epistemologies, we find that epistemological dominance in SE&H degree programs disadvantages students through three processes. First, it delegitimizes Native epistemologies and marginalizes and silences students who value them. Second, in the process of imparting these dominant scientific epistemologies, SE&H courses sometimes require students to participate in pedagogical practices that challenge indigenous ways of knowing. Third, students encounter epistemological imperialism: most students in the sample are working to earn SE&H degrees in order to return to tribal communities to “give back,” yet, because the US laws regulating the practice of SE&H extend onto tribal lands, students must earn credentials in epistemologies that devalue, delegitimate, and threaten indigenous knowledge ways to practice on tribal lands. We examine how students navigate these experiences, discuss the implications of these findings for SE&H education, and describe how epistemological dominance may serve as a mechanism of inequality reproduction more broadly.
In biomedicine, practitioners often treat risk of disease as an illness in itself—suitable for monitoring and intervention. In some cases, increased diagnostics improve health outcomes by detecting problems early. Recently, however, science and technology studies scholars and medical practitioners have noted that the treatment of risk can also lead to unnecessary intervention and possible harm. Despite these findings, it is often hard to see changes in practice. Childbirth serves as an illuminating case because two models of health risk operate simultaneously—in addition to the model valuing frequent intervention, there is another that seeks to mitigate risk by refusing medical surveillance. Based on interviews with birth providers and an analysis of professional documents, this article uses the case of fetal heart rate monitoring in American childbirth to demonstrate how some health providers are framing “intentional non-knowing” as a moral imperative to reduce medical risk. Studying the success and limitations of this “risk counterculture” illuminates how risk societies are changing in response to data suggesting that more information can have hurtful effects. This case integrates well-developed theories of knowledge production with less-developed theories of knowledge nonproduction, leading to a more fruitful discussion of the boundaries of responsible knowledge in risk management.
Age of despair or age of hope? Palestinian women’s perspectives on midlife health
Doaa Hammoudeh, Ernestina Coast, DavidLewis, Yokevan der Meulen, Tiziana Leone, Rita Giacaman
There is limited evidence about women’s experiences of the midlife, beyond a narrow – frequently biomedical – focus on the menopause. The broader (physical, social, cultural, political) dimensions of women’s midlife health are poorly understood, particularly in low and middle-income countries. Our study seeks to understand how women in the West Bank (occupied Palestinian territories) conceptualise, experience and manage their health in the midlife. We generated qualitative evidence using in-depth life history interviews in 2015 with women (n = 35) living in the West Bank, analysed thematically. Women’s understandings of good health draw on indigenous and biomedical knowledge and include a calm psychological state, ease of movement, as well as physical appearance and complexion. Exposure to political violence was understood as impacting mental and physical well-being. Most women articulated a positive view about midlife and ageing as a natural process. A range of terms and expressions were suggested by women experiencing this transition, internalised differently according to marital and motherhood status. For many women, the menopause was merely one – often relatively unimportant – aspect of changes associated with ageing. In dealing with midlife health issues women used multiple strategies, or health pluralism, sequentially or simultaneously; drawing on multiple sets of accrued resources. For never-married or childless women, formal healthcare services represented a site of social exclusion. Our evidence highlights the importance of considering the broader dimensions related to midlife health for understanding women’s health maintaining and care-seeking behaviours as they age.
Resisting decay: On disposal, valuation, and care in a dementia nursing home in Denmark
Iben M. Gjødsbøl, Lene Koch, and Mette N. Svendsen
This paper approaches institutionalized dementia care as a site of societal disposal, valuation, and care for human life. Drawing upon six weeks of ethnographic fieldwork and ten qualitative interviews carried out in a Danish dementia nursing home in 2014, we analyze how nursing home staff, through everyday care, uphold the value of life for residents in severe mental and physical decline. We argue that life’s worth is established when residents gain qualities of personhood and agency through substitution processes carried out by staff. Yet the persistent absence of conventional personhood and autonomous agency in residents (i.e. capacities for memory, consciousness, language, and mobility) evokes experiences of ambiguity in staff and relatives of residents. We close the article with a discussion of this ambiguity and the significance of the nursing home as care institution in the welfare state. Dementia care, we propose, is not only about preserving the lives of people with dementia. At stake in the daily care practices around severely disabled residents in the nursing home is the very continuance of the main principles of the welfare society.
Notions of deficit and ‘faultiness’ shape depictions of the association between autism and uneasy social relationships. That framing has been the focus of critique by autistic activists and scholars who, exploring autistic people’s sociality, reframe issues of social difficulty in terms of inequality and discomfort. Located within this set of debates, the article analyses data from a UK based study of mental health narratives derived from semi-structured interviews with 19 autistic young adults aged 23 to 24. The NIHR funded the study, and a UK National Health Service Research Ethics Committee gave ethical approval. Sociality and social difficulties, feelings of discomfort, and perceptions of the autistic self as ‘faulty’ were themes of the study. Exploring the nexus of inequality, non-autistic social power, fears about social performance and (dis)comfort that underpinned the accounts, the article explores the conclusions the young adults reached about social difficulty. Critically examining notions of improvability, the article contributes to debates about sociality, social difficulty and comfort by questioning the assumption that social dysfunction is due to autistic ‘fault’. The article concludes with a discussion of inequality in autistic and non-autistic encounters, and of the social dynamics that deny autistic people social comfort.
Re-working biographies: Women’s narratives of pregnancy whilst living with epilepsy
Annalise Weckesser, Elaine Denny, the EMPIRE Collaborative Network
This paper explores the multiple ways experiences of pregnancy and early motherhood come to ‘rework’ the biographies of women living with epilepsy. Pregnancy is explored as a temporarily concurrent status alongside the long-term condition of epilepsy. Narrative interviews were conducted with 32 women from across the UK. Analysis of these narratives suggests that biographical disruption and continuity are both useful in the conceptualisation of women’s diverse experiences of pregnancy and epilepsy. Such findings challenge the notion that the presence of a condition over a long period of time leads to the normalisation of illness. Participants’ narratives demonstrate that, for some, pregnancy and early motherhood may be disruptive and can raise concerns regarding an ever present condition that may previously have been taken for granted. Findings also indicate the need for a greater consideration of gender and care responsibilities, as well explorations of concomitant conditions, in the theorising of biographies and chronic illness.
Remains of care: opioid substitution treatment in the post-welfare state
This article examines how the amplified role of pharmaceutical substances in addiction treatment affects the everyday realisation of care, particularly the relationship between workers and patients, in so called austere environments. Theoretically the article draws firstly on the literature that links pharmaceuticalisation to the neoliberal undoing of central public structures and institutions of care, and secondly on Anne-Marie Mol’s concept of the logic of care. Based on an ethnographic analysis of the everyday life at a Finnish opioid substitution treatment clinic we show the mechanisms through which the realisation of pharmacotherapy can, in the current political climate, result in a very narrow understanding of drug problems and minimal human contact between patients and professionals. Our analysis manifests an important shift in the logic of addiction treatment and health-care policy more broadly; namely, a growing tendency to emphasise the need for patients to care for themselves and make good choices with limited help from formal care institutions and professionals. We call this new ethos the logic of austerity.
Probiotic Environmentalities: Rewilding with Wolves and Worms
A probiotic turn is underway in the management of human and environmental health. Modern approaches are being challenged by deliberate interventions that introduce formerly taboo life forms into bodies, homes, cities and the wider countryside. These are guided by concepts drawn from the life sciences, including immunity and resilience. This analysis critically evaluates this turn, drawing on examples of rewilding nature reserves and reworming the human microbiome. It identifies a common ontology of socio-ecological systems marked by anthropogenic absences and tipped across thresholds into less desirable states. It examines the operation of an environmental mode of biopower associated with deliberate efforts to engineer ecologies through the introduction of keystone species. It offers a set of criteria for critically evaluating the degree to which these interventions transform or sustain prevalent forms of late modern biopolitics. The conclusion reflects on the potentials of probiotic environmentalities for hospitable government beyond the Anthropocene.