“Dirty like a Tenant”: Migration and Embodied Dispositions in Malawi

ABSTRACT

Much has been written about how structural (e.g. colonialism) and social (e.g. gender) determinants shape embodied health outcomes. However, little attention has been paid to the ways that marginalized populations become complicit in their own oppression. Ethnographic data collected over two years at a rural public hospital in Malawi show that the tobacco political economy produces significant intra-rural inequalities that result in the exclusion of migrant farm workers, called “tenants,” from HIV care. Using an analytical framework informed by Bourdieu’s concepts of social field and habitus, I illustrate how social inequalities persist unchallenged, even by the most disadvantaged people.     

"The Adopted Children of ART": expert clients and role tensions in ART provision in Uganda

The implementation of the greater involvement of people living with HIV (GIPA) principle in Ugandan AIDS care is described by focusing on the engagement of expert clients in two rural health centers during a time of antiretroviral therapy (ART) scale-up. We contrast how the expert clients help overburdened nurses to manage the well-attended ART programs in the public and in the nongovernmental organization clinic. They are unpaid, but acquire preferential status in the ART program because of their knowledge of AIDS medicines (and its adverse effects) and because of the compassionate care that they provide. Despite the assistance provided, nurses in the public facility felt threatened in their professional status by these expert clients, who were seen to overstep the boundaries of their role. We pay particular attention to the double burden for HIV-positive nurses, who fear stigma, and (unlike the expert patients) keep their HIV status secret.     

Blaming Machismo: How the Social Imaginary is Failing Men with HIV in Santa Cruz,Bolivia

Drawing from an ethnography of HIV care in Santa Cruz, Bolivia, in this article I explore how the social imaginary surrounding gender relations shapes men’s experiences of seeking care for and living with HIV. Popular understandings of gender relations, which draw heavily on the machismo concept, intersect with a global health master narrative that frames women as victims in the AIDS epidemic in a way that generates a strong sentiment of blaming machismo within local HIV/AIDS-related services. Statements such as, “it’s because of machismo” are used to explain away epidemiological trends. Participant observation in the context of HIV care, coupled with illness narrative interviews, illuminate how blaming machismo shapes men’s experiences of care and the ways that they feel excluded from various forms of support. Thus, the illness experiences of men with HIV problematize the machismo concept and how it is drawn upon in the context of care.     

Much More than a Clinic: Chicago’s Free Health Centers 1968-1972

ABSTRACT

Drawing on archival evidence, I document the emergence and florescence of three free health clinics in Chicago in the late 1960s. I trace the centers’ forceful removal by the city’s Board of Health, and their subsequent replacement by Federally Qualified Health Centers (FHQCs). I argue that the demise of the free centers is exemplary of a broader trend in US health policy of regulating and diminishing the health care options of poor Americans. By highlighting the stark contrast between Chicago’s free health centers of the 1960s and the health care services offered by contemporary FQHCs, I reveal a gradual shift from health care rights to accessing care in the US health care safety net.     

Patients and Personhood: Perceptions of HIV in Mozambican Immigrants in South Africa

ABSTRACT

Foreign-born immigrants residing in South Africa largely come from sub-Saharan countries with the highest HIV prevalence rates worldwide. These migrants may manage HIV medically, despite precarious conditions, but little is known about how they manage socially in shifting cultural and clinical landscapes. In this article, I explore the complexities of stigma by juxtaposing perceptions of illness between HIV-positive Mozambican migrants in care and members of their communities unware of their own serostatus. I argue that stigma is tied to location through social networks. Sharp perceptual contrasts between patients and community members result in equally contrasting social positionalities and othering in sprawling migrant communities, where secrecy and gossip become strategies of social survival. Due to its social lethality, stigma continues to cause distress.     

Dementia Matters: User-Building Interactions Shaping Institutional Life in the Netherlands

ABSTRACT

In this article, I examine building-user interactions on three dementia wards in the Netherlands. I coin the concept of “sociomaterial awareness” to articulate a collective situational sensitivity to the ways in which the built environment invites its users (professionals, but also people with dementia themselves) to act in specific ways, as well as to possibilities to adjust (elements of) the building. I argue that along with different enactments of dementia, different positions become available for residents when the built environment is acknowledged as actively shaping care interactions.     

Stigma and rejection: living with AIDS in villages in southern Thailand

The problems that face HIV/AIDS patients are now fairly well documented. These include experiences of guilt, anger, grief, fear of abandonment, and potential economic hardship and marginalization due to others' fear of infection and associated stigma. However, limited attention has been paid to the effects of AIDS-related stigma on access to, and the provision of, health services. Understanding how the stigma of AIDS affects the processes and experiences of diagnosis, treatment, prevention, and care is critical to effective public health policy and the delivery of health care programs and medical services. In this article, we examine stigma as experienced by people with HIV and AIDS, and by their families, in village Thailand. We also identify areas for improvement pertaining to people with HIV/AIDS and other stigmatizing diseases.     

Diabetic Retinopathy and the Cascade into Vision Loss

ABSTRACT

Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a “high stakes” diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of “cascades” to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases.     

The “Last Child”: Lone Family Caregivers in St. Croix,US Virgin Islands

ABSTRACT

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the “lone family caregiver.” Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice “care across distance,” as it offers an alternative example of how families manage care in the context of migration.     

Future medical education: Preparing,priorities, possibilities

Abstract

Introduction: As educators who are guiding the preparation of future health professionals, we must do what we can to recognize and meet the needs of those our graduates will serve. Fulfilling that goal depends on our responding to relevant changes in society and to evolving understanding of learning processes.

Preparing: To have educational programs that evolve appropriately when preparing learners for the future, we too must evolve. We need to prepare by recognizing shifts in population health and other societal trends that bring implications for the kinds of clinicians needed. External trends can require changes in our thinking and practices so that we reform any outdated educational traditions.

Priorities: Societal changes relevant to medical education and health care are happening so rapidly that we need to select from existing trends those that are most pressing and impactful. As we set our priorities, we need to understand the process of facilitating lasting changes in people and institutions.

Possibilities: In addition to responding to the changes that are arriving, we need to be initiating additional changes. Here, I suggest some reforms needed in health professions education, if our students are to become the clinicians that their future patients deserve.     

Sensing Sleeping Sickness: Local Symptom-Making in South Sudan

ABSTRACT

Programs for neglected tropical diseases (NTDs) such as sleeping sickness increasingly involve patients and community workers in syndromic case detection with little exploration of patient understandings of symptoms. Drawing on concepts from sensorial anthropology, I investigate peoples’ experiences of sleeping sickness in South Sudan. People here sense the disease through discourses about four symptoms (pain, sleepiness, confusion and hunger) using biomedical and ethnophysiological concepts and sensations of risk in the post-conflict environment. When identified together, the symptoms interlock as a complete disease, prompting people to seek hospital-based care. Such local forms of sense-making enable diagnosis and help control programs function.     

Searching for Love and Test-Tube Babies: Iraqi Refugee Men in Reproductive Exile on the Margins of Detroit

ABSTRACT

In this article, I explore the reproductive health problems faced by Iraqi refugees, one of America’s most rapidly growing immigrant populations. Based on anthropological research in “Arab Detroit,” the “capital” of Arab America, I explore the experiences of Iraqi refugee men seeking medical help for their infertility. Most required intracytoplasmic sperm injection (ICSI), a variant of in vitro fertilization (IVF). However, in America’s privatized medical system—where a single cycle can cost more than $12,000—few could possibly afford this assisted reproductive technology (ART). Although Iraqi refugees had diasporic dreams of making a test-tube baby, they were stuck in a situation of “reproductive exile”—forced out of their home country by war, but unable to access costly ARTs in the country that led to their displacement. I elaborate on the concept of reproductive exile, attempting to translate Iraqi refugee men’s reproductive agency and desires, but also their profound disappointments.     

Political Therapeutics: Dialogues and Frictions Around Care and Cure

ABSTRACT

In 1978, Italy passed a law establishing the abolition of the mental hospital. Up to that time, the traditional asylums were still governed by the 1904 law that positioned psychiatry within the criminal justice system by assigning it the function of custodia (control, custody) rather than of cura (care). In the 1960s and 1970s, Italian psychiatrist Franco Basaglia initiated a movement of de-institutionalization of the mentally ill that revolutionized psychiatric care in Italy. It also had a deep impact on restructuring the psychiatric system in other European and Latin American countries. In this article, I discuss the different psychiatric practices and imaginaries that resulted from the movement of democratic psychiatry and Basaglia’s visions for a community-based and diagnosis-free care of the mentally ill. I ethnographically trace what I call the “Basaglia effect” in today’s psychiatric practices, and focus on ethnopsychiatry as a counter clinic that emerged from Basaglia’s legacy. I reflect on the frictions between care and cure that ethnopsychiatry re-articulates and works with in the context of contemporary migrations to Europe.     

Redeeming Lost Mothers: Adolescent Antiretroviral Treatment and the Making of Home in South Africa

In this article, we explore how adolescent antiretroviral treatment (ART) might be signified to repair sociality in Eastern Cape homes that have been ruptured by HIV/AIDS and maternal loss. The post-apartheid period has exposed these families to new forms of social fragmentation, propelled by the disintegration of wage labor, declining marriage rates, and a rampant HIV/AIDS epidemic. Drawing on eight months of ethnographic fieldwork (August 2013–April 2014), we show that in the homes of some adolescents born with HIV, these present-day domestic ruptures were discursively connected to the past shortcomings of their dead and absent mothers. In some familial narratives lost mothers were accused of disobeying their elders, neglecting their children, and flouting custom; their social transgressions were made manifest in their child’s inherited HIV. By signifying adolescent ART-taking as an enactment of the discipline and care purportedly absent in their mothers, these families might also attempt to imbue ART, beyond its biomedical function, as a means of social repair.     

Neurodegeneration and the Intersubjectivities of Care

ABSTRACT

Caring for a family member or friend with a serious health condition is a common feature of social life. Often, such care is framed as a burden, an unwelcome rupture in the fabric of everyday life. We draw on research conducted in Australia and the UK to examine care in the everyday lives of people living with and caring for neurodegenerative diseases and to trouble care as a burden. Participants in our studies mobilized practices of care to collaboratively produce a “good life”. We argue that above all, care is a relational, enacted practice requiring examination in its local context.     

Chronic Living in a Communicable World

ABSTRACT

By April 2020, COVID-19 lockdowns had restricted the movements of over half the world’s population. As health authorities advise people living with chronic conditions to self-isolate because they are at particular risk of serious complications and death, the epidemiological split between communicable and noncommunicable disease is tenuous. We argue that much more is at stake for people living with (multiple) medical conditions than being “at risk” of infection of coronavirus. We emphasize the need to attend to the long-term effects of COVID-19, but also the importance of the continued care of people living with other lifelong medical conditions.     

Crowdfunding FOR MEDICAL CARE: Ethical Issues in an Emerging Health Care Funding Practice

Crowdfunding websites allow users to post a public appeal for funding for a range of activities, including adoption, travel, research, participation in sports, and many others. One common form of crowdfunding is for expenses related to medical care. Medical crowdfunding appeals serve as a means of addressing gaps in medical and employment insurance, both in countries without universal health insurance, like the United States, and countries with universal coverage limited to essential medical needs, like Canada. For example, as of 2012, the website Gofundme had been used to raise a total of 8.8 million dollars (U.S.) for seventy‐six hundred campaigns, the majority of which were health related. This money can make an important difference in the lives of crowdfunding users, as the costs of unexpected or uninsured medical needs can be staggering. In this article, I offer an overview of the benefits of medical crowdfunding websites and the ethical concerns they raise. I argue that medical crowdfunding is a symptom and cause of, rather than a solution to, health system injustices and that policy‐makers should work to address the injustices motivating the use of crowdfunding sites for essential medical services. Despite the sites’ ethical problems, individual users and donors need not refrain from using them, but they bear a political responsibility to address the inequities encouraged by these sites. I conclude by suggesting some responses to these concerns and future directions for research.     

Race-ing Time: Clinical Temporalities and Inequality in Public Prenatal Care

ABSTRACT

Analysis of clinical temporalities, or the social organization of time in the clinic, offers insights into how racism coheres in pregnant bodies and institutions, with implications for health care experiences for patients and providers. Based on research at a public prenatal clinic, I argue that long patient wait-times and pressure on providers to speed up are temporal instantiations of the same racist structures that shape public health care in the US. Through these temporal experiences, racialized patient populations and staff who work in racialized systems of public health care encounter the lesser value assigned to their time, bodies, and labor.     

The Care of “Small Things”: Aging and Dignity in Rwanda

ABSTRACT

In Rwanda, disruptions to family and social life as a result of the 1994 genocide, and the economic transformations in its aftermath, have complicated the fabric of elder care across the country. In this article, I focus on how elderly Rwandans are reconfiguring their care networks – many of which were destroyed during the genocide – by acting as caregivers and care receivers for each other on a daily basis. Although emotionally and physically taxing, elderly Rwandans emphasize that the “small things” embedded in the giving and receiving of care are intricately connected to how personal and collective dignity is cultivated.