Sportswomen as ‘biocultural creatures’: understanding embodied health experiences across sporting cultures
Holly Thorpe, Marianne Clark & Julie Brice
Over the past decade, a critical mass of feminist scholars has been working to develop new ways of understanding the complex interactions between the social and biological body. Working broadly under the umbrella of ‘new materialisms,’ a subgroup of feminist scholars is proposing alternative non-dualistic models for engaging with biology, corporeality, science, and matter. In this study, we take inspiration from this body of literature, and particularly Samantha Frost’s recent concept of ‘biocultural creatures’ to explore the complex entanglements between sporting cultures and women’s biological bodies. In conceiving of biology differently, this study reveals the dynamism and plasticity of the biocultural sporting body and reveals sportswomen as active agents in these processes. Interviews with sportswomen in two different sporting cultures—endurance multi-sport events (triathlon and Ironman) and rugby sevens—offer rich insights into how different body ideals, physical requirements, support structures, and performance cultures intra-act with women’s biological bodies, and particularly their embodied experiences of the health condition known as Relative Energy Deficiency in Sport (RED-S). Ultimately, this study reveals sportswomen as biocultural creatives, “constantly composing, decomposing and recomposing” (Frost 2016, p. 149) in response to their engagement with distinctive sporting habitats.
Psychological trauma has become the main framework for understanding the impact of rape on individual victims. Trauma has traditionally been understood as a mental illness conceptualized in opposition to normality. This dichotomous model of trauma is now in competition with a scale model in which trauma is conceptualized on a scale of normality. In this article, I study these two models of trauma by analyzing victims’ narratives of rape. I investigate how trauma emerges in victims’ narratives of rape to consider the ways in which the trauma discourse contributes to shaping how victims make sense of, and respond to, experiences of rape. The analysis is based on qualitative interviews with rape victims. I argue that the interviewees primarily talk about trauma on a scale of normality in which they portray trauma as something they can develop if they do not take responsibility for their health. In this way, they can escape trauma and, accordingly, the potential stigmatizing effects of psychiatric labels. At the same time, however, escaping trauma in this manner makes trauma inescapable, as it entails their continued commitment to take responsibility for their health.
Heibaika (Mandarin for black-and-white cards) are tools that Taiwanese parents use for infants below 3 months old. These cards are claimed to stimulate vision and enhance the brain. Although the scientific efficacy of heibaika is questionable, the wide circulation of these cards illustrates the ways some try to urge laypeople to imagine and picture the infant brain. Thus, the use of heibaika constitutes a good example of neuroparenting and neuroculture, where flourishing neuroscience transforms the parenting culture. In the present study, multiple methodologies are applied, and the emergence of heibaika is identified as a twenty-first century phenomenon popularised by online forums and postpartum care centres, among many other channels. Heibaika are contextualised in the globalisation of neuroparenting through translation since the 1990s and the rising anxiety of contemporary Taiwanese parents. Through interview analysis, parents are classified into believers, sceptics, and cautious experimenters. Their anticipations and worries are further elaborated. The paper concludes by highlighting its three major contributions: the importance of studying lay neuroscience as a way to rethink and problematise the boundary between science and culture, the enrichment of the concept of neuroparenting, and the emphasis on the dimension of globalisation and knowledge transmission.
Yu-Yueh Tsai & Wan-Ju Lee
Based on the concept of an imagined future community, this article analyzes the relationship between the establishment of a national biobank (Taiwan Biobank) and nation-building. This article examines (1) the shift in state policy from pursuing a Sci-Tech Island to an Island of Biomedical Technology for the purpose of strengthening the national economy and Taiwan’s global competitiveness in biomedicine, (2) the discourses about the uniqueness of the Taiwanese genome as a niche in the competitive global biomedical market, and (3) scientists’ imaginary of the necessity of a national genetic project for the health of Taiwan’s future generations. By exploring how the discourse of the Taiwanese genome as a niche has been constructed, this article reveals that life science and scientists’ imaginary of the futurity who have played important roles in Taiwan’s nation-building. We argue that the future imaginaries contained in the scientific discourse regarding Taiwan Biobank reflect the ideas of global scientific competition, connections between genetic distinctness and nationality, and the health of future generations in Taiwan.
Obesity has been at the forefront of the public health agenda in the United States since the late 1990s. Commonly considered a simple condition of excess for most of the 20th century, I argue that in order for scientific inquiry into obesity to be considered legitimate, an important transformation was required: obesity needed to be reconstructed as a complex condition, in need of multidisciplinary collaboration and significant, sustained research investment. Drawing on document analysis, in-depth interviews with obesity researchers, and ethnographic observation, in this article I show how the frame of complexity has been instrumental for obesity researchers carving out a legitimate area of scientific inquiry. I trace how complexity has been mobilized over the past 60 years, first during infrastructure building activities that occurred beginning in the early 1970s, as well as field expansion activities that institutionalized the frame during the 1990s and 2000s. While the complexity frame has largely been successful in attracting sustained investment in biomedical and public health research on obesity, it has differentially benefited researchers and those impacted by obesity.
Bryan Denham, Stacy Cacciatore, Michael Caves
This study examined how the covers of three newsmagazines, Time, Newsweek, and U.S. News & World Report, portrayed drugs of abuse between 1979 and 2019. Findings showed consistency with extant research suggesting that a rigid focus on supply has resulted in a vilification of Latino traffickers from Central and South America. We also saw differences in how newsmagazines portrayed powder cocaine and crack cocaine and observed patterns of “White washing” opioid abuse. Implications and recommendations for future research are provided.
Tracy R. Nichols et al.
People who are diagnosed with a substance use disorder can experience stigmatizing interactions with health and social service providers, which may decrease both quality and continuity of care. For women with a substance-exposed pregnancy (SEP), this stigma can increase exponentially. Stigmatizing interactions can be difficult to identify due to social sanctions against expressing stigmatizing attitudes, beliefs, and behaviors and because stigma often resides in accepted cultural norms. Examining discourses around care provision can serve to identify instances of social stigma as well as illuminate the cultural norms in which they are embedded. Using data from a seven-year grounded theory study on perinatal substance use service provision, this paper reports on the perceptions and experiences of service providers working with mothers who have an SEP and illustrates complexities behind stigmatizing patient-provider interactions. Data collected included observations at meetings, workshops, and conferences addressing best practices across the continuum of care for perinatal substance use as well as interviews and focus groups with providers. The construct of “good mothering,” or hegemonic motherhood, was identified as an important cultural norm that supported social stigma and was embedded in providers’ interactions with mothers with an SEP. Discursive elements found in providers’ descriptions of perinatal substance use service work are presented and highlight the role of hegemonic motherhood as a stigmatizing agent.
C. Gelpí-Acosta et al.
People who inject drugs (PWID) who migrate from Puerto Rico (PR) to New York City (NYC) are at elevated risk for hepatitis C (HCV), HIV and drug overdose. There is an urgent need to identify a sustainable path toward improving the health outcomes of this population. Peer-driven HIV/HCV prevention interventions for PWID are effective in reducing risk behaviors. Additionally, the concept of intravention—naturally occurring disease prevention activities among PWID (Friedman, 2004)—is a suitable theoretical framework to cast and bolster PWID-indigenous risk reduction norms and practices to achieve positive health outcomes. From 2017–2019, we conducted an ethnographic study in the Bronx, NYC to identify the injection risks of migrant Puerto Rican PWID, institutional barriers to risk reduction and solutions to these barriers. Study components included a longitudinal ethnography with 40 migrant PWID (e.g., baseline and exit interviews and monthly face-to-face follow-ups for 12 months), two institutional ethnographies (IEs) with 10 migrants and six service providers, and three focus groups (FGs) with another 15 migrant PWID. Data were analyzed using a grounded theory approach. In this article, we present findings from the IEs and FGs, specifically regarding a promising intravention pathway to promote health empowerment among these migrants that leverages an existing social role within their networks: the PR-indigenous ganchero. A ganchero is a vein-finding expert who is paid with drugs or cash for providing injection services. Ethnographic evidence from this study suggests that gancheros can occupy harm reduction leadership roles among migrant Puerto Rican PWID, adapting standard overdose and HIV/HCV prevention education to the specific experiences of their community. We conclude by noting the culturally appropriate risk reduction service delivery improvements needed to mitigate the health vulnerabilities of migrants and provide a roadmap for improving service delivery and identifying future research avenues.
Benedikt Fischer, Dimitri Daldegan-Bueno, Peter Reuter
Cannabis control policies in a few countries have recently shifted from criminal prohibition-based regimes to legalization of use and supply. While cannabis’ newly emerging status of legality may suggest a coming “end” for criminology-based interest in the drug, these fundamental changes rather open a window to a new set of criminological research issues and questions, mostly focusing on cannabis use and related behaviors, and their relation to crime and justice. Based on a joint, personal record of several decades of criminological research on cannabis, we briefly review the rationale for five fundamental topics and issues of cannabis-related research associated with legalization. These include: 1) the deterrent effect of prohibition; 2) illicit production, markets and supply in a legalization regime; 3) use enforcement; 4) cannabis-impaired driving; 5) cannabis and crime. This constitutes an—albeit subjectively selective—“post-legalization” research agenda for a cannabis-focused criminology. Other possible areas of research focus or interest within fundamentally different paradigms of criminology (e.g., “critical criminology”) are identified and encouraged for development. Overall, the proposed research agenda for a post-legalization cannabis criminology should both contribute discipline-specific knowledge to improved cannabis-related public health and safety as well as allow for important debate and development in this evolving and important research field while entering a new (“post-legalization”) era.
Ryan J. Lofaro, Hugh T. Miller
Safe injection sites are spaces where people who inject drugs can do so under the supervision of staff at the sites who attempt to revive them if they overdose. Public officials in Philadelphia, Pennsylvania, have proposed the sites as a means to reduce opioid overdose deaths in the city, a policy proposal that has been politically and legally contested. This article uses the Narrative Politics model to elucidate the concerns, values, and aspirations of the competing narratives in the public discourse over safe injection sites in Philadelphia. Despite the aspirations expressed within the Harm Reduction narrative to open such a site, opposition from the Nimby (not in my backyard) narrative has, at the time of this research, successfully precluded such a step. Other narratives in the discourse include the Abstinence narrative opposing safe injection sites and the Social Justice narrative opposed to incarceration but also hesitant to wholeheartedly endorse the Harm Reduction narrative for its delayed advocacy of compassionate treatment of people who use drugs now that the face of the person who uses opioids is a white one. In addition to juxtaposing competing narratives against one another and considering their alignments, disagreements, and interactions, the authors consider absences and shared presuppositions. The social construction of the purported drug addict varies in some ways between and among the prevailing narratives; in other ways, all the narratives problematize “addiction” as an affliction that justifies techniques of discipline aimed at caring for and controlling the population.
Elisabeth Assing Hvidt et al.
The aim of this article is to show how Jürgen Habermas’ communicative action theory serves as a useful tool in analysing and interpreting empirical data on how Danish general practitioners experience defensive medicine in their everyday working life. Through six qualitative focus group interviews with a total of 28 general practitioners (14 men and 14 women), the general practitioners’ understandings of and experiences with defensive medicine were unfolded and discussed. Traditionally, defensive medicine is understood as physicians’ deviation from sound medical practice due to fears of liability claims or lawsuits. In this study, however, a broader understanding of defensive medicine emerged as unnecessary medical actions that are more substantiated by feelings of demands and pressures than meaningful clinical behaviour. As a first analytical step, the data are contextualized drawing on the medical sociological literature that has theorized recent changes within primary health care such as regulation, audit, standardization and consumerism. Using Habermas’ theorization to further interpret the general practitioners’ experiences, we argue that central areas of the general practitioners’ clinical everyday work life can be seen as having become subject to the habermasian social and political processes of ‘strategic action’ and ‘colonization’. It is furthermore shown that the general practitioners share an impulse to resist these colonizing processes, hereby pointing to a need for challenging the increasingly defensive medical culture that seems to pervade the organization of general practice today.
This article examines institutional resistance to veganism, with a focus on the medical system. Based on a qualitative analysis of vegans’ accounts of medical encounters in Estonia, collected via an online questionnaire, I argue that the vegan body is socially constructed as a deviant entity by medical professionals. I suggest that the medical professionals’ perceptions of vegans are based less on the actual conditions of their bodies but more on ideas about what are socially and politically acceptable identities and (bodily) practices. Deviance is produced through association with the uneasy category of ‘vegan’. The experiences of vegans in the medical system illuminate the role of powerful social institutions in resisting transition towards more ethical and ecologically sustainable food practices and in endorsing human exploitation of other animals.
Elizabeth McDermott et al.
Conflict with the family about sexual orientation and gender diversity is a key risk factor associated with poor mental health in youth populations. Findings presented here derive from a UK study that employed an interdisciplinary critical mental health approach that de-pathologised emotional distress and conceptualised families as social and affective units that are created through everyday practices. Our aim was to explore how family relationships foster, maintain or harm the mental health and well-being of LGBTQ+ youth. Data were generated through exploratory visual, creative and digital qualitative methods in two phases. Phase 1 involved digital/paper emotion maps and interviews with LGBTQ+ youth aged 16 to 25 (n = 12) and family member/mentor interviews (n = 7). Phase 2 employed diary methods and follow-up interviews (n = 9). The data analytic strategy involved three stages: individual case analysis, cross-sectional thematic analysis and meta-interpretation. We found that family relationships impacted queer youth mental health in complex ways that were related to the establishment of their autonomous queer selves, the desire to remain belonging to their family and the need to maintain a secure environment. The emotion work involved in navigating identity, belonging and security was made difficult because of family heteronormativity, youth autonomy and family expectations, and had a stark impact on queer youth mental health and well-being. Improving the mental health of LGBTQ+ youth requires a much deeper understanding of the emotionality of family relationships and the difficulties negotiating these as a young person.
Nik Brown et al.
Antimicrobial resistance and the adaptation of microbial life to antibiotics are recognised as a major healthcare challenge. Whereas most social science engagement with antimicrobial resistance has focused on aspects of ‘behaviour’ (prescribing, antibiotic usage, patient ‘compliance’, etc.), this article instead explores antimicrobial resistance in the context of building design and healthcare architecture, focusing on the layout, design and ritual practices of three cystic fibrosis outpatient clinics. Cystic fibrosis is a life-threatening multi-system genetic condition, often characterised by frequent respiratory infections and antibiotic treatment. Preventing antimicrobial resistance and cross-infection in cystic fibrosis increasingly depends on the spatiotemporal isolation of both people and pathogens. Our research aims to bring to the fore the role of the built environment exploring how containment and segregation are varyingly performed in interaction with material design, focusing on three core themes. These include, first, aspects of flow, movement and the spatiotemporal choreography of cystic fibrosis care. Second, the management of waiting and the materiality of the waiting room is a recurrent concern in our fieldwork. Finally, we take up the question of air, the intangibility of airborne risks and their material mitigation in the cystic fibrosis clinic.
Julie Høgsgaard Andersen et al.
The international literature shows that primary care is well placed to address mental health problems in young people, but that primary care professionals experience a range of challenges in this regard. In Denmark, young adults who have complex psychosocial problems, and who are not in education or work, cause political and academic concern. They are also in regular contact with their general practitioners, the Danish municipalities and psychiatric services. However, little is known about general practitioners’ perspectives on caring for this vulnerable group of patients. In this article, we investigate how general practitioners’ care work is shaped by the bureaucratic management of care in a complex infrastructure network comprising the general practitioners, psychiatry, the municipalities and the young adults. The analysis is based on interviews and focus groups with general practitioners, psychiatric nurses and social workers. We employ Tronto’s concept of care and the concept of boundary work as a theoretical framework. We argue that general practitioners strive to provide care, but they are challenged by the following: contested diagnostic interpretations and the bureaucratic significance of diagnoses for the provision of care from psychiatry and the municipalities, systemic issues with handling intertwined social and mental health problems, and the young adults’ difficulties with accessing and receiving available care.
Rebecca Randell et al.
Safe and successful surgery depends on effective teamwork between professional groups, each playing their part in a complex division of labour. This article reports the first empirical examination of how introduction of robot-assisted surgery changes the division of labour within surgical teams and impacts teamwork and patient safety. Data collection and analysis was informed by realist principles. Interviews were conducted with surgical teams across nine UK hospitals and, in a multi-site case study across four hospitals, data were collected using a range of methods, including ethnographic observation, video recording and semi-structured interviews. Our findings reveal that as the robot enables the surgeon to do more, the surgical assistant’s role becomes less clearly defined. Robot-assisted surgery also introduces new tasks for the surgical assistant and scrub practitioner, in terms of communicating information to the surgeon. However, the use of robot-assisted surgery does not redistribute work in a uniform way; contextual factors of individual experience and team relationships shape changes to the division of labour. For instance, in some situations, scrub practitioners take on the role of supporting inexperienced surgical assistants. These changes in the division of labour do not persist when team members return to operations that are not robot-assisted. This study contributes to wider literature on divisions of labour in healthcare and how this is impacted by the introduction of new technologies. In particular, we emphasise the need to pay attention to often neglected micro-level contextual factors. This can highlight behaviours that can be promoted to benefit patient care.
Hannah Brown Almudena Marí Sáez
The Ebola outbreak in West Africa involved the introduction of new forms of social and physical separation that aimed to curtail the spread of the disease. People changed the ways they lived to avoid contact with those who might be sick. A suite of governmental instruments was introduced, ranging from by‐laws and public health campaigns to the use of specialist treatment centres and military force. These events transformed social connections and affected possibilities for trust in intimate, governmental, and therapeutic relations. Drawing upon fieldwork in Sierra Leone, Liberia, and Guinea, this article explores these forms of separation and social distance ethnographically, with a focus on material objects, touch, and spaces of separation. In doing so, we contribute to discussions on the constitution of trust and distance within social relations, and the ways in which separation can enable certain kinds of closeness. Our analysis offers insights for those seeking to understand the impact of the ongoing COVID‐19 pandemic on the ways that people relate to, and care for, others.
Nicolás Acosta García
What is life like after drift‐cocaine arrives in a village on Colombia’s Northern Pacific coast? Drift‐cocaine is a side‐effect of the interdiction of drug transport boats heading towards Central and North America as part of the US‐Colombian War on Drugs. Villagers refer to drift‐cocaine as the White Fish. Through ethnographic engagement with Afro‐descendant peoples in Chocó, this article explores the effects and relations that emerge from an ocean turned into an amphitheatre of fishing livelihoods, drug traffickers, and military operations. By taking seriously the White Fish as the way people refer to cocaine, I focus on gossip and rumour as the strategies they employ to discuss the pervasive effects of the drug trade. I trace three interrelated discussions – concerning violence, cocaine, and the White Fish – in order to argue for the usefulness of gossip and rumour in investigative ethnographies of violence.
Nonprofit efforts to develop MDMA—better known as the street drug Ecstasy—as a prescription pharmaceutical provide the opportunity to examine recent theorizations of pharmaceuticals as fluid objects transformed in new informational and material environments. Drawing from ethnographic research, this article interrogates MDMA researchers’ own distinction between MDMA and the street drug Ecstasy. While researchers maintain that pure MDMA is distinct from Ecstasy, this article argues that the difference between the two hangs not on a distinction in substance, but on a distinction in safety that must be produced through the trial. This article tracks the production of safety through the inter‐connected work of clinical documents, which manage both which bodies are allowed to absorb the drug and which bodily events count as effects. MDMA’s safety emerges from the careful management of relations through these documentary practices.
J. Neil Henderson, Linda D. Carson, Alisa Tomette, Amanda Hass, Kama King
Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child’s glucose as a stress‐path to the virtual embodiment of their child’s condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.
Katherine A. Mason
Drawing on 18 months of participation on an epidemiological research team and close analysis of in‐depth interviews the team conducted with 30 Chinese immigrants to New York City, this article traces a process I call epidemiologizing culture. In producing qualitative interview data from Chinese immigrants at risk for HIV, team members smoothed over individual variation to extract elements thought to be relevant to population‐level experiences of “Chinese culture.” Relevance was determined based on how closely the experiences of participants mirrored the behavior of a Chinese ideal type. Interviewer and interviewee collaborated in articulating and reproducing homophobic and HIV‐phobic discourses associated with Chinese culture while erasing details of lived experience, and conflating race and culture. I conclude that differing epistemic virtues make an epidemiological embrace of contemporary anthropological understandings of culture difficult. A model of “parallel play” may be an alternative approach to interdisciplinary synthesis.
Kyrstin Mallon Andrews
This article explores the connections between bodily health and environmental health among diver fishermen in the Dominican Republic, and how these relationships are excluded from broader conversations about marine conservation at the national and global levels. As changing ocean environments refigure marine ecosystems, making fish scarce in the shallows, diver fishermen must dive deeper and stay longer in risky conditions, using a compressor to pump an unlimited supply of air to the diver below. As a result, decompression sickness (the bends) has become a pervasive injury and a way that coastal communities experience changing ocean health. The article analyzes injury narratives from divers who “caught air,” the local term for the bends, arguing that decompression sickness is a symptom of failing ecologies and strained human relations with the sea, where environments at risk become embodied through parallel risky practices at sea.
Lisa Allette Brooks
This article offers vascularity as a multi‐dimensional imaginary for the interspecies entanglements constituting Ayurvedic leech therapy. Whether, when, where, and how a leech decides to bite, suck, and release comprise pivotal junctures in leech therapy as practiced in southern Kerala, India. In the course of leech–human intra‐actions, leeches translate matter, providing sensory mediation, relief, and amusement. Enmeshed in social and ecological relations inflected by gender, religion, class, and caste, this analysis of Ayurvedic leech therapy reframes questions of agencies starting with and from the viewpoint of the vascular capacities of leeches in their interactions with humans. This image of vascularity provides an analytic for the emergent agencies of humans and leeches constituted by sensory intra‐actions at branching points in this multispecies clinical practice.
Based on ethnographic research in a public hospital trauma intensive care unit in Mumbai, India, this article formulates the concept of “social breathing” to analyze how breath is central to values of life at the edges of death. Case studies of emergency resuscitation, intubation, and ventilation each illustrate breathing’s sociality, as people and machines move air both materially and immaterially. Amid the hospital’s rationing of life support technologies, forms of life that seem to be self‐regulated are better understood as relational movements of breath. Social breathing stands to reshape our understanding of the biopolitics of intensive care by drawing attention to uncertain techniques of the body. These techniques move at the hinge between person and environment, self and other, public and private health care systems, and medicine and machine. Life’s valuation at this hinge takes shape through breath moving against its limits. Ultimately, the article argues that it is crucial to understand how ventilators mediate the edges of life and death by tracing the circulations of life support as the movements of life itself. As patients, families, and hospital workers struggle to make and manage breath, we might better grapple with the social relations that emerge as life support shapes life.
Lauren Sealy Krishnamurti
As a therapeutic practice of care, “watchfulness” (Garcia 2010) implies a vigilant responsibility and constant mindfulness of others; in Hawaii, this is captured in the concept of aloha. This article explains how watchful care with aloha is discussed and mobilized in community suicide prevention in Hawaii. Rates of suicidality and suicide attempts in the state are high, among young people in particular. My ethnographic research follows a network of workers and volunteers as they incorporate local understandings of aloha into suicide prevention outreach. Following a history of aloha’s meanings and (mis)uses in and beyond Hawaii, I draw on ethnographic examples to reveal how care with aloha prioritizes personal connection and individuality, rather than being rhetorically detached or “anonymous” (Stevenson 2014). But as my central vignettes reveal, there are difficulties in the implementation of this kind of watchful care, which ultimately question its utility in suicide prevention.
Rachel Hammer et al.
Death Cafés are non-profit social franchises that arise spontaneously in communities to serve as informal forums for discussing death. There is a great need within the medical community for the kind of conversation that Death Cafés foster: open, unstructured, spontaneous, genuine and interdisciplinary dialogue. Burnout in healthcare, with symptoms of exhaustion, depersonalisation and decreased efficacy, is a global crisis, with alarming estimates suggesting one in three practicing physicians experience burnout. While open-forum community-based Death Cafés exist widely, there appears to be no evidence in the literature to suggest that healthcare settings have adapted this model for fostering debriefings among hospital employees. We have started hospital-based Death Cafés in a large, public, urban-centre, Level I Trauma centre in the Gulf South in an effort to study healthcare worker burnout. In this brief commentary, we introduce the concept of hospital-based Death Cafés as distinct from community-based Death Cafés. From our experience, hospital-based Death Cafés are easy to implement, inexpensive, require little planning and yet offer tremendous reward to participants. Should the phenomenon of Death Cafés take off in hospitals as it has in communities internationally, we propose that this intervention be studied for its effect on healthcare worker burnout.
Michelle Botha, Brian Watermeyer
This paper presents an exploration of my experiences and unique positioning as a blind, White South African woman. It explores the complex intersections of multiple axes of identity in my own experience to do with disability, race, class and language and, in so doing, presents some ideas about the ways in which disability complicates and disturbs simplistic identity categories. It draws, in particular, on the experience of my first year of formal schooling which took place in 1994 as South Africa held its first democratic election, bringing a politico-legal, if not actual, end to decades of racial segregation. Using this experience, I explore the ways in which, against the sociopolitical backdrop of apartheid’s racial segregation, ideas about race and disability, that is, Blackness and blindness, became entangled and how this entanglement impacted my ability to claim a place as either blind or sighted. Through this critical engagement I hope to be able to offer a perspective, not only on how the apartheid system operated, forcing the projection of negative characteristics onto Black people, but also on how this legacy continues to impact those of us who occupy unstable positions, at the intersection of privilege and marginality. Central to the argument is the position that the wholesale binding up of social disadvantage with race in the South African context prohibits and manages the status that persons with disabilities are able, or not able, to claim.
Infectious disease epidemics are widely recognised as a serious global threat. The need to educate the public regarding health and safety during an epidemic is particularly apparent when considering that behavioural changes can have a profound impact on disease spread. While there is a large body of literature focused on the opportunities and pitfalls of engaging mass news media during an epidemic, given the pervasiveness of popular film in modern society there is a relative lack of research regarding the potential role of fictional media in educating the public about epidemics. There is a growing collection of viral outbreak films that might serve as a source of information about epidemics for popular culture consumers that warrants critical examination. As such, this paper considers the motivating factors behind engaging preventive behaviours during a disease outbreak, and the role news and popular media may have in influencing these behaviours.
Plato’s Charmides, I argue, is a remarkably productive text for confronting and questioning some common presuppositions about the body and illness, particularly when we take seriously Socrates’ claim that healing Charmides’ headaches requires first examining—and perhaps healing—his soul. I begin by turning to the work of the psychiatrist and medical anthropologist Arthur Kleinman to argue that even if the pain Charmides experiences is more ‘physical’than ‘mental’, a physical exam and physical intervention alone will not necessarily be effective in treating his headaches. Next, I turn to the work of the phenomenologist Maurice Merleau-Ponty and his discussion of the phenomenon of the ‘phantom limb’ to argue that the body, rather than simply being a physical object is, instead, primarily an experiencing subject; the body is fundamentally our way of having a world. Furthermore, illness, rather than being conceived of as either a physical or mental disorder, should instead be understood in terms of a person’s being-in-the-world with others. Finally, I return to Plato’s Charmides and argue that, just as the phantom limb reflects the destruction of a specific way of being-in-the-world with others, Charmides’ headaches reflect the construction of a specific way of being-in-the-world with others.
Tracy Moniz et al.
Patients and family caregivers tell different stories about their illness and care experiences than their physicians do. Better understanding of the relationships among these narratives could offer insight into intersections and disconnections in patient, caregiver and physician perceptions of illness and care. Such understanding could support enhanced patient-centred care in medical education and practice. Narrative writing is increasingly common among physicians, patients and caregivers and uniquely positioned to reveal matters of concern to these groups. We conducted a scoping review to identify literature in which first-person narratives from more than one group (physicians, patients and/or caregivers) were considered as ‘data’. A search strategy involving nine databases located 6337 citations. Two reviewers independently screened titles and abstracts. Full-text screening followed (n=82), along with handsearching of grey literature and bibliographies. Of these, 22 met inclusion criteria. Most pieces analysed narratives by patients and caregivers (n=13), followed by patients, caregivers and physicians (n=7) and patients and physicians (n=2). Only nine pieces compared perspectives among any of these groups. The rest combined narratives for analysis, largely patient and caregiver stories (n=12). Most of the 22 papers used descriptive content analysis to derive themes. Themes of humanity, identity, agency and communication intersect between groups but often manifest in unique ways. What is absent, however, is a more interpretive narrative analysis of structure, orientation and characterisation within these narratives, which may reveal even more than their content. This scoping review offers a cautionary tale of lost potential. Many narratives are gathered and analysed but usually only thematically and rarely comparatively. We call for researchers to explore the potential of comparative analysis and the power of narrative inquiry in the field. Comparative narrative analysis may enrich understanding of how differences between perspectives come to be and what they mean for the experience of illness and care.
Chrystal Jaye et al.
In New Zealand, aiding and abetting a person to commit suicide or euthanasia even with consent is unlawful. The introduction of a third Bill on assisted dying to the House of Representatives following a high-profile court case afforded an opportunity for examining how assisted dying was discussed in the public sphere. In this article, we report on a discourse analysis of a selection of social media to illustrate the ways in which citizens participate in the voluntary euthanasia debate. The volume of social media posts that made up our data set suggests that the legalisation of assisted dying is a highly topical and deeply salient societal issue. Social media postings represent the voices of ordinary citizens who may not participate in formal public consultation processes. Based on our analysis, the assignment of binary conclusions about public opinion is simplistic and fails to adequately represent the intricacies of public debate. Contributors’ posts reveal deeply held sociocultural values, as well as tensions about the relationship between citizens and the apparatus of government.
Naomi Richards, Marian Krawczyk
Assisted dying is now a lawful and integral component of many societies ‘death system’, orienting individual and collective encounters with death and dying. While only a very small number of people living with terminal illness in these societies will opt for an assisted death, the choice, nevertheless, exists for those who satisfy the legal criteria. Theoretically, in these jurisdictions, this turns dying into an optional part of the human life cycle; a final phase of life that, until now, seemed a universal feature of life except in instances of sudden death. As anthropologists specialising in death and dying, we pose the question of how the various cultural scripts that have sought to give meaning to dying in post-industrial Western societies since the mid-20th century might be affected by the advent of assisted dying. We begin by building on both medical and social science literature to construct a working definition of ‘dying’. We then identify four dominant cultural scripts: psychological growth, preparation for death, the suffering experience and the caring experience. After outlining each script, we discuss how it may (or may not) be affected by the increase in assisted dying legislation. We propose that it is the ‘caring’ script; the notion of affective, intergenerational bonds created through the experience of caring for people specifically in the last few months or weeks of their life, which are likely to be most affected. However, we find that access to these cultural scripts is already limited because of the widespread reluctance to recognise and name ‘dying’, and the challenges of doing so. Consequently, the various cultural scripts we identify are negated not by the increase in assisted dying, but rather by a combination of medical advances and institutional orthodoxies which limit opportunity for people to experience themselves, or others, as ‘dying’.
Lay people are now encouraged to be active in seeking health and medical information and acting on it to engage in self-care and preventive health practices. Over the past three decades, digital media offering ready access to health information resources have rapidly expanded. In this article, I discuss findings from my study that sought to investigate health information practices by bringing together the social research method of story completion with more-than-human theory and postqualitative inquiry. Narratives of health, illness and embodiment are powerful ways to portray people’s experiences and identify the shared cultural norms and discourses that give meaning and context to these experiences. The research method of story completion is a novel approach to eliciting narratives that involve participants’ responses to hypothetical situations. Participants were asked to use an online questionnaire format to complete three stories involving characters faced with a different health problem. This approach sought to identify the human and non-human enabling resources with which the characters engaged as they tried to address and resolve their problem, with a particular interest in how both digital technologies and non-digital resources were used. This analysis highlighted the affective and relational dimensions of humans’ enactments of health, illness and embodiment. The stories surfaced the relations of sense-making, embodiment and care and how they are distributed between humans and non-humans. Agential capacities were closed off by elements such as too much information online creating confusion or anxiety, self-consciousness about the appearance of one’s body, feelings of embarrassment and shame, or not wanting to appear to be too weak or vulnerable. Capacities for change, wellness and recovery were opened by finding helpful information, making connections with others and finding therapeutic spaces and places.
Andrea LaMarre, Carla Rice
Interdisciplinary healthcare providers (HCPs) receive only minimal training in identifying, referring for and treating eating disorders and may feel ill-prepared to manage them. There is a need for brief interventions that prepare HCPs for work with people with eating disorders, particularly when they do not fit stereotypes about who might experience an eating disorder. One method for enacting brief interventions that make change in this realm is using digital stories (short videos) to generate awareness and knowledge. In this article, we discuss the results of a pilot study exploring the impact of viewing digital stories created by people in eating disorder recovery and their supporters on an interdisciplinary group of HCPs. We showed five stories to 22 HCPs who filled out qualitative prequestionnaires and postquestionnaires about their experiences of viewing the films and how they conceptualised recovery. Providers found the stories evocative; the stories appear to have complexified their perspectives on recovery. HCPs desired more diverse, detailed and lengthy stories, indicating that pursuing digital storytelling for HCP education and awareness may hold promise. Through centring the voices of people with eating disorders and in recovery, digital stories may also provide new ways of talking about recovery that open up possibilities for embracing difference.
In 1913, eccentric French composer Erik Satie wrote a fragmentary, diary-like essay where he depicted a strikingly rigid diet consisting solely of white foods: eggs, sugar, coconuts, rice, cream cheese, fuchsia juice and so on. Satie’s brief essay has later been used as one of many puzzle pieces in attempts to retrospectively diagnose him with autism spectrum disorder. With Satie’s white meal as a starting point, this paper explores colour-based food preferences and selective eating in clinical and non-clinical populations, with a special focus on autism spectrum disorder and avoidant/restrictive food intake disorder (ARFID). General colour preferences and their causes as well as the impact of colour on taste and food identification are also explored. Selective eating during childhood is immensely common and does not generally lead to disordered eating in the long run, although subgroups may experience rigidity around food of a more enduring nature. Problems related to eating were repeatedly described in Kanner’s original 1943 autism case series and continue to be common in autism. Most studies on eating and sensory sensitivity in autism show that the texture and consistency of the food are the most common factors behind selective eating. In contrast, colour-based food preferences appear to be relatively rare, although numerous anecdotal reports exist. Foods that are white or colourless may be particularly appealing or tolerable for individuals with sensory hypersensitivity, which can occur in autism or ARFID. Ultimately, in the case of Erik Satie, this paper concludes that his description of a strictly white diet should not be read as an autobiographical account but rather as an ironic take on contemporary symbolist literature, with the famously decadent all-black dinner party in French novelist Joris-Karl Huysmans’ À Rebours (1884; also known as Against Nature) as an obvious source of inspiration.
Sjaak van der Geest, Shahaduz Zaman
This essay focuses on sensory aspects of care in situations surrounding defecation in hospitals and other care institutions. Sensory activity does not merely encompass pleasant experiences that enhance healing and well-being. Anthropologists—and other disciplines as well—have paid little attention to unpleasant and disgusting experiences that our senses meet and that may rather increase pain and suffering in the context of care. Our essay therefore reflects on a common but highly uncomfortable aspect of being a—sometimes bedridden—patient: defecation. The sensory effects of human defecation are well known. They affect at least four of the five traditional senses. But equally repulsive are the social and emotional effects that defecation in a hospital context has on both patients and professional and other care providers. The essay is based on anthropological observations and the authors’ personal experiences in Bangladesh, Ghana and the Netherlands and covers a wide variety of cultural and politicoeconomic conditions. It further draws on (scarce) scientific publications as well as on fictional sources. Extensive quotations from these various sources are presented to convey the lived sensorial experience of disgust and overcoming disgust more directly to the reader.
Lauraine Margaret Helen Vivian et al.
This medical humanities paper describes our qualitative research into pathways to care and informed consent for 10 children who had cardiac surgery in the Red Cross War Memorial Children’s Hospital, Cape Town, South Africa. Our multidisciplinary team consists of cardiologists, anthropologists, a social scientist and a general practitioner in two sites, South Africa and Australia. This paper builds on our first publication in a specialist cardiology journal on a ‘qualitative snapshot’ of these children’s life stories from 2011 to 2016 but turns to the medical humanities to explore a concept of ‘uncertainty’. Data analysis revealed that for the children’s parents and doctors, ‘uncertainty’ underscored procedures. Indeed, the literature review showed that ‘uncertainty’ is intrinsic to heart surgery and was integral to Barnard’s first heart transplant in Cape Town in 1967. We demonstrate that in meeting the challenges inherent in the ‘uncertainty dimension’, doctors established greater ‘medical certainty’about each operation. This happened as they encountered the difficult clinical and biopsychosocial factors that were fundamental to the diagnosis of children’s cardiac defects. It was doctors’ translation of these decision-making processes that informed parental decisions and described why, despite feelings of uncertainty, parents signed consent. To visually describe heart surgery in this locality we asked the South African photographer, Guy Neveling to record some children undergoing echocardiograms and surgery. These photographs qualitatively demonstrate what medical certainty entails, and parents’ trust in doctors and surgeons, whom they knew had ‘reasonable certainty’ that their child’s ‘heart is worth saving’.
In the 2010s, a small number of science fiction films and television series exploring the theme of the robot carer and how humans respond to them were released. This paper explores three works in this regard: the films Robot & Frank (dir. Jake Schreier, USA 2012), Big Hero 6 (dir. Don Hall/Chris Williams, USA 2014) and the television series Humans (UK/USA, Channel 4/AMC, 2015–2018). Examining these works with some of the ethical issues currently being discussed in the use of robot technology in care work, this paper demonstrates how they align themselves with, but also challenge some of these ideas, and ultimately direct viewers to consider their own expectations of personalised healthcare. The essay begins by examining the fears of the care industry deploying robots to replace the work of human carers, followed by a discussion of the effectiveness of robots as carers as depicted in these fictional representations, and the final section considers the social environment that these robot carers are situated in, and how the robots become a reflection of human lives and a repository of memories of affective relations. These texts suggest alternate ways of thinking about human–robot interactions and care work, advocating for a more mutually dependent and reciprocal working relationship that might lead to a better quality of care.
Increasing calls from medical professionals and scholars suggest an urgent need for better and more widespread understandings of the ecological dimensions of health. Such calls have included: two recent Lancet special commissions on impacts of climate change on health; and recognition by senior figures from the WHO and United Nations of relationships between human impacts on the natural world and disease pandemics, with some suggesting prevention of future pandemics may require a radical reassessment of modernity’s relationship with the natural world.
Among the medical humanities as a whole, however, calls for better and more widespread understandings of the ecological dimensions of health have not always been as prominent, or urgently expressed, as they might be.
This paper, which presumes there is an urgent need for better and more widespread understandings of the ecological dimensions of human health, draws on ecological public health and other models to propose an ecological re-visioning of our conceptions of health and medical humanities; and in ways that challenge some contemporary assumptions about health, well-being and the ‘good society’. Indeed, once we begin to heed what ecocritic Tim Morton terms ‘the ecological thought’, we may discover few areas of healthcare and the humanities remain untouched by its implications.
With growing recognition that the fate of global human health and the fate of the biosphere are inextricably entwined, the project of a more ecologically dimensioned medical humanities appears both timely and urgent. Such a project may represent a significant opportunity for the medical humanities, and a significant responsibility.