Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine (Special Issue)
Drawing on interview and online ethnographic data from a study of suicide on the railways, this paper describes the ways in which many of the concepts, assumptions and practices of mainstream suicide prevention are challenged in the accounts of those who are planning, or have enacted, a suicide attempt. We reflect on the ethical dilemmas which can arise for researchers (and practitioners) when lived experience accounts diverge – theoretically, morally and in terms of practical implications – from present-day expert ones. In online, ‘pro-choice’ suicide discussions, people describe beliefs, attitudes, ways of thinking and acting which stand in contrast to existing professional and clinical descriptions of suicide and suicidal behaviour. Most obviously, there is often a rejection of ‘pro-life’ positions, which are framed as ideological, oppressive and naïve. For researchers engaging in online ethnography of ‘pro-choice’ spaces, dilemmas can arise in relation to the representation of perspectives which fundamentally challenge not only prevailing norms within suicide research and prevention practice but socio-cultural norms more widely. Similar issues can arise when considering how best to represent research participants when their accounts diverge from accepted ‘expert’ knowledge and beliefs. In-depth qualitative interviews with those who have thought about or attempted to take their own life indicate that existing theories and models of suicide which start from assumptions of deficit and pathology underestimate the extent to which suicide, as the end result of an often-complex series of actions, requires a person to engage in logistical processes of planning, decision-making, imagination and adaptation. The accounts described here, gathered using two different methodological approaches, highlight the ethical issues which can surface when there are competing claims to (expert) knowledge, as well as differences in beliefs, attitudes and moral stance towards life and death. We argue that researchers need to reflect on their own ethical-moral position in relation to suicide, and on the practical consequences of their privileging of some voices at the expense of other, less well represented, ones.
Despite a plethora of existing literature on the topic of suicide, very little attention has been given to research ethics in practice in research on suicide. When suicide research does pay attention to the ethical issues researchers are likely to face, the focus is on the roles institutional human ethics review committees fulfil to ensure ethical conduct in all stages of research. In response to this problem, this article focuses on the philosophical relationship between qualitative methodology and research ethics in the context of researching queer youth suicide. In so doing, I draw on my experiences of interviewing gender-and sexually diverse young people about their familiarity with suicide. These experiences are based on a qualitative pilot study I conducted on queer youth suicide, which used the unstructured interview technique to collect data. Drawing on the works of Emmanuel Levinas and Judith Butler, I examine what it means to face the alterity of the suicidal ‘Other’, and what this facing entails in terms of research ethics as relational. I argue that facing reveals not only myself as more vulnerable than I anticipated, but also the suicidal ‘Other’ as agentic instead of only vulnerable and at-risk of suicide.
Tisha X, marcela polanco
From the Latin American modernity/coloniality project, we address the inhospitality of the modern/colonial and globally designed world-system in relation to suicidality. In our vernacular Spanglish, guided by epistemological disobedience, and responding to epistemicide, we interpellate ourselves to unmask the hidden colonial structures of power of modernity’s global design on suicide knowledge. Our intent is to argue, specifically from the perspective of coloniality and our racialized, gendered, and monetized bodies, that suicide is rather an extension of modernity’s colonial genocide. From the decolonial geo and body-politics of knowledge, our discussion on modernity’s Eurocentric rhetoric on suicide departs from the materialization of suicidality in our flesh. We story experiences of our bodies with life and pleas of death, within the context of our immigrant backgrounds, and as family therapists in the United States (U.S.). We adopt autopsy as an analogy from where to advance such analysis to contest Eurocentric configurations of suicide from within, but against modernity. We emphasize the hidden racism and capitalism of suicide embedded within the persuasive Eurocentric promises of the Anglo scientific method and the U.S. American Dream. We address the concepts of epistemicide, coloniality of knowledge and of being. It is our hope to contribute to further advance decolonizing possibilities to reinscribe options that would border with the current Western knowledge on suicide. This may require other configurations of the body, knowledge, hence ways of being, doing, thinking, sensing, feeling, imagining, and dreaming to coexist among pluriversal hospitable worlds of life and death.
Christian King, Xi Huang, Nahim A. Dewan
We used data from the Fragile Families and Child Wellbeing Study which includes a sample of adolescents of age 15 at the most recent wave (between 2014 and 2017) from mainly low-income urban families in the United States, to examine the association between neighborhood poverty entries and exits and adolescent depression and anxiety. In addition, we examined whether these associations differed by gender. Adolescents who consistently lived in disadvantaged neighborhoods had the highest level of depression and anxiety. Those who entered poor neighborhoods were more depressed than those who never lived in poor neighborhoods. Those who exited poor neighborhoods showed no significant difference in depression and anxiety compared to those never lived in poor neighborhoods. Furthermore, these associations applied to adolescent girls only and were not statistically significant for boys. The results suggest that neighborhood poverty has cumulative negative impacts on adolescent mental health and disproportionally affects adolescent girls. Reducing neighborhood poverty would substantially improve the health of adolescents, especially girls, which would reduce health disparities.
Mary Rita Holland
Most home care for people living with chronic illness or disability is provided by informal, or unpaid, family members. Family caregivers in rural New Brunswick engage in essential work to maintain the home as a site of care. Renovations, property maintenance, and the administrative work involved in accessing medical equipment and managing staff are examples of the types of invisible labour involved in interacting with a complex care environment. Conversations with 13 family caregivers across a small rural Canadian province suggest that even when resources are ‘available’, place-based factors involved in caring at home in a rural setting make it difficult for carers to use these resources and accessing them becomes another form of work itself. Similar to Wiles et al.’s (2018) findings in their study of end-of-life family care in Aotearoa, New Zealand, carers in rural New Brunswick spoke of their activities as part of an ongoing process of interaction with the care recipient and care environment. Carers with fewer financial and material resources experienced higher burdens of invisible work. The paper sheds light on the types of labour involved in ‘knowing, doing, and negotiating’ care at home and re-categorizes these activities as ‘health work’ as a means of informing home care policy. The paper finds that family caregivers are aware of their invisible work, characterize it as essential health work, and seek recognition for their complex contribution to the formal health system.
Daniely Sciarotta, Mark Hunter
While much research now demonstrates how social inequalities can drive HIV transmission, relatively little attention is given to the spatialized ‘intersections’ of race, class, and gender. Using this approach, this article considers an understudied phenomenon in Brazilian HIV discussions, the importance of the drug economy in shaping intimacy in favelas. Drawing on interviews with young women in Rio de Janeiro, it documents the intimate relations between young women and male drug workers to situate HIV vulnerability at the juncture of three social-spatial changes: (1) the rise of a drug economy that provides some racialized men, marginalized from mainstream society, with opportunities for work; (2) the precarious economic position of racialized women; and (3) the gendered dynamics including violence that can shape intimate relations. The paper shows how these relationships are contested by women who can cast their partners as living a ‘wrong life.’
Janet McGaw, Alasdair Vance, Selena White, Sharon Mongta
Whose values matter when considering which environment is healthier for a child whose guardianship is contested? The biological mother from a remote Australian Aboriginal community, who voluntarily relinquished her but has now requested her return? The foster mother who has cared for her in a metropolitan centre in another State of Australia, thousands of kilometres away? The welfare professionals who also live in that city? Or the child herself, who left her birth home and community five years earlier at the age of two? Drawing on a case study of a seven-year old Aboriginal girl, the authors argue that non-Indigenous values trumped Indigenous values without the realisation of key players who were empowered to make such determinations. The article uses Manuel DeLanda’s neo-assemblage theory to consider the range of processes that exert themselves to shape place-values and social identity in colonised nations. It will also draw on Erik Erikson’s and Lev Vygotsky’s theories of psychosocial development to consider competing sets of values that raised feelings of dissonance within the child. Beliefs about what makes a place health-giving are revealed to be complex in colonised nations. Despite policy and legislative changes to better support Aboriginal people and their right to difference, non-Indigenous professionals can continue to be driven by an unrecognised systemic racism. While place-values are not, of course, the only (or perhaps even the most significant) consideration in guardianship determinations, this article will argue they can play a significant and covert role.
Merrill Singer, Nicola Bulled, Thomas Leatherman
In this article, we address the nature of syndemics and whether, as some have asserted, these epidemiological phenomena are global configurations. Our argument that syndemics are not global rests on recognition that they are composed of social/environment contexts, disease clusters, demographics, and biologies that vary across locations. These points are illustrated with the cases of syndemics involving COVID-19, diabetes mellitus, and HIV/AIDS. We draw on theoretical discourse from epidemiology, biology, and anthropology to present what we believe is a more accurate framework for thinking about syndemics with shared elements.
Doors are infamous in psychiatry for being used as instruments of constraint. Yet, while taking a close look at the doors of an open psychiatric center for teenagers in Brussels, I discover that doors play much more ambivalent roles beyond the issue of access and that their normativity shifts in the ongoing practice of care. While examining the moral life of these doors, I describe four modes of reflexivity that unfold with them. These reflexive modes are central to care work, since they put fraught issues on the table and enable a more livable everyday togetherness in institutional care.
In US states that have foregone Medicaid expansion, a disinvestment in general assistance programs has meant that disability benefits remain one of the few sources of cash assistance ostensibly available to uninsured working poor Americans. Yet among impoverished South Carolinians, economic hardship and ill-health often compound during the long, uncertain waits for a disability determination. Here I explore the peculiar vulnerabilities of working poor disability seekers living in an insurance gap of a state that has foregone Medicaid expansion; individuals that risk the protracted, injurious waiting for a chance at meaningful healthcare.
Since the 2000s, European open data policies have given a strong boost to commercial meteorology by giving free access to weather observations and models produced by public organizations. This article examines the efforts and challenges met by a French company that developed an offer of weather services based on the commodification of both open weather data and local observations produced by low-cost stations used by farmers. However, the paper shows that such commercialization of stations’ data is hampered both by their material friction with the weather infrastructure and by an economic friction related to data’s heterogeneous valuations. As solving the economic friction generated by data’s valuation is the priority of commercial meteorologists, they finally differentiate their offer using simulated weather data produced by computing models. Finally, the paper claims that the commercial process inherent to the use of this other type of data subordinates weather science to a logic of services: when designing a service for agriculture, the company considered that simulated data were more suited to digital farm advising services. In the end, it is the capacity of weather data to be integrated into private services and tools that valuate them as suited to guide farming practices.
The newest innovation in assisted reproduction is oocyte cryopreservation, more commonly known as egg freezing, which has been developed as a method of fertility preservation. Studies emerging from around the world show that highly educated professional women are turning to egg freezing in their late thirties to early forties, because they are still searching for a male partner with whom to have children. For these women, egg freezing may be a new “hope technology” for future romance; but it may also be a “technology of despair,” as women navigate the ends of a failing relationship. Based on the largest ethnographic study to date, undertaken with 150 women who froze their eggs for nonmedical reasons in the United States and Israel, we examine egg freezing at the end of romance. Relationship dissolution—involving divorce, separation, broken engagements, and relationship breakups from men who are unfaithful, controlling, rejecting, uncommitted, or unready for fatherhood—is one of the major pathways to egg freezing. When such relationship dissolution ruptures a woman’s reproductive life course, egg freezing may become a “technology of repair,” allowing women to find new strengths and opportunities as well as new visions for the future.
In recent years, policymakers have begun to problematize how legislation stands in the way of the digitalization of the public sector. We are witnessing the emergence of a new phenomenon, digital-ready legislation, which implies that, whenever possible, new legislation should build on simple rules and unambiguous terminology to reduce the need for professional (human) discretion and allow for the extended use of automated case processing in public-sector organizations. Digital-ready legislation has potentially wide-ranging consequences because it creates the conditions for how public organizations are digitalized. The processes, practices, choices, and responsibilities for drafting digital-ready legislation, however, are not well-described or debated. Digital-ready legislation is a dormant issue. This paper develops the notion of the “double darkness” of digitalization to account for this. Based on a qualitative study, the paper investigates how digital-ready legislation as a sociotechnical arrangement is shaped by policy tools and by a complex, collaborative process where responsibility for legislation is fragmented. It argues that although the policy tools are aimed at making actors responsible for digitalization and creating clarity about the process, actors seem to be reluctant to take on the responsibility for making political decisions related to digitalization.