Here’s our November In the Journals. For the posthumanists out there, there is a special issue of Theory, Culture & Society on Transversal Posthumanities that might be of interest. Enjoy!
Anita Hardon, Ian Anthony B. Davatos, Gideon Lasco
Young people in Puerto Princesa, the Philippines, are drawn to working as salespeople for AIM Global, a purveyor of the nutritional supplement C24/7. The company relies on multilevel marketing, in which sellers recruit other sellers, offering youth not only the chance to earn money but also educational discounts, access to bank cards, and an opportunity to develop do‐it‐yourself entrepreneurial skills. Trainers encourage sellers to capitalize on their intimate relations, to tailor the supplements to assuage aging clients’ metabolic‐health anxieties, and to use C24/7 themselves so that they can testify to its benefits. Such “sociometabolic” work is omnipresent in urban settings, where workers in beauty salons and gyms likewise promise to mitigate the material, bodily disturbances caused by toxic environments and precarious living conditions.
In the movement known as Spiritualism, successful performances of “mental mediumship” are rarely smooth. At services held by the Canberra Spiritualist Association, mediums attempt to provide evidence of life after death by describing a deceased person’s character in ways recognizable to audience members. A medium’s verbal performance de‐emphasizes heteroglossia while developing vivid spirit characters. Audience members sometimes do not understand or accept what the medium says, but small “failures” in performance help build a larger sense that mediums and audiences are working to gather evidence. As they work, mediums foreground and background their agency at the same time, displaying their fluency in spirit communication while identifying spirits as ultimately responsible for being present, and offering messages to the living.
Humanitarian agencies often reach for new designs and technologies in order to meet basic human needs. In the field of emergency shelter, one of the most widely publicized new designs is the Ikea refugee shelter: a flat‐packed, mass‐produced structure that can be shipped and constructed wherever it is required. This shelter aspires to be a universal solution, but since its formal launch in 2013, it has met with criticism and many challenges in the field. Deployed in political contexts in which people have very different expectations of basic shelter, the Ikea shelter demonstrates the limitations of universal standards, the inequities of humanitarianism, and the entwinement of biopolitics and the politics of life.
Long-accepted models of causality cast diseases into the binary of either “contagious” or “non-communicable,” typically with institutional resources focused primarily on interrupting infectious disease transmission. But in southern Belize, as in much of the world today, epidemic diabetes has become a leading cause of death and a notorious contributor to organ failure and amputated limbs. This ethnographic essay follows caregivers’ and families’ work to survive in-between public health categories, and asks what responses a bifurcated model of infectious versus non-communicable disease structures or incapacitates in practice. It proposes an alternative focus on diabetes as a “para-communicable” condition—materially transmitted as bodies and ecologies intimately shape each other over time, with unequal and compounding effects for historically situated groups of people. The article closes by querying how communicability relates to community, and why it matters to reframe narratives about contributing causalities in relation to struggles for treatment access.
| “I tend to forget bad things”: Immigrant and refugee young men’s narratives of distress |
Carla T Hilario, John L Oliffe, Josephine P Wong, Annette J Browne, Joy L Johnson
Distress among young immigrant and refugee men has drawn increasing research attention in recent years. Nuanced understandings of distress are needed to inform mental health and public health programming. The purpose of this research was to examine distress from the perspectives of young immigrant and refugee men living in Greater Vancouver, British Columbia, Canada. Thirty-three young men (aged 15–22 years) from diverse immigrant and refugee backgrounds participated in interviews, which were conducted between 2014 and 2015. Data were examined using narrative analysis and theories of masculinities. Three narratives were identified—norming distress, acknowledging distress as ongoing, and situating distress. The findings reveal that the narratives offer different frames through which distress was rendered a norm, or acknowledged and situated in relation to the participants’ relationships and to masculine discourses that shaped their expressions of distress. The findings can inform initiatives aimed at providing spaces for diverse young men to acknowledge their distress and to receive support for mental health challenges.
Jana Declercq, Stéphan Tulkens, Sarah Van Leuven
This article examines the Twitter and Facebook uptake of health messages from an infotainment TV show on food, as broadcasted on Belgium’s Dutch-language public broadcaster. The interest in and amount of health-related media coverage is rising, and this media coverage is an important source of information for laypeople, and impacts their health behaviours and therapy compliance. However, the role of the audience has also changed; consumers of media content increasingly are produsers, and, in the case of health, expert consumers. To explore how current audiences react to health claims, we have conducted a quantitative and qualitative content analysis of Twitter and Facebook reactions to an infotainment show about food and nutrition. We examine (1) to which elements in the show the audience reacts, to gain insight in the traction the nutrition-related content generates and (2) whether audience members are accepting or resisting the health information in the show. Our findings show that the information on health and production elicit the most reactions, and that health information incites a lot of refutation, low acceptance and a lot of suggestions on new information or new angles to complement the show’s information.
Liz Brewster, Andrew M Cox
Interest in the connection between involvement in digital communities and well-being has increased as these communities become more commonplace. Specific models of interaction that affect well-being have emerged; here, we examine one of those models, termed ‘digital daily practice’. Digital daily practices involve a commitment to doing one thing – exercise, photography and writing – every day and sharing it online. Participants in these practices agree that they provide an unexpected benefit of improving well-being. This article makes an in-depth examination of one digital daily practice, photo-a-day, using a practice theory framework to understand the affordances it offers for well-being. We engage with the literature on well-being and self-care, critiquing its presentation of well-being as an individual trait. We present data from an ethnographic study including interviews and observations to highlight how photo-a-day as a practice functions as self-care and how communities are formed around it. Photo-a-day is not a simple and uncomplicated practice; rather it is the complex affordances and variance within the practice that relate it to well-being. We conclude that this practice has multi-faceted benefits for improving well-being.
Adam Flintoff, Ewen Speed, Susan McPherson
From the 1980s onwards, discourses of risk have continued to grow, almost in ubiquity. Ideas and practices of risk and risk aversion have extended to UK mental health care where services are expected to assess and manage risks, and high-quality clinical assessment has been revised to incorporate risk assessment. This article problematises practices of risk assessment in mental health provision, focussing on the base-rate problem. It presents an analysis of audio recordings of risk assessments completed within a primary care mental health service. The analysis is informed by a critical logics approach which, using ideas from discourse theory as well as Lacanian psychoanalysis, involves developing a set of logics to describe, analyse and explain social phenomena. We characterise the assessments as functioning according to social logics of well-oiled administration and preservation, whereby bureaucratic processes are prioritised, contingency ironed out or ignored, and a need to manage potential risks to the service are the dominant operational frames. These logics are considered in terms of their beatific and horrific fantasmatic dimensions, whereby risk assessment is enacted as infallible (beatific) until clients become threats (horrific), creating a range of potential false negatives, false positives and so forth. These processes function to obscure or background problems with risk assessment, by generating practices that favour and offer protection to assessors, at the expense of those being assessed, thus presenting a challenge to the stated aim of risk assessment practice.
The “right to health” operates as a buzzword in Indonesia to frame health policies as beneficial to citizens. Right to health is equated with access to Western biomedical services. Within the policy on partnership between biomedical and traditional midwives, only the biomedical midwife can fulfill the right to health. The “traditional” midwife is reframed as her assistant. Right to health language hides underlying tensions in relationships between these two categories of midwives by presenting the policy as mutually beneficial. Right to health language is effective in the post-Suharto era as it aligns with other incontestable values, including democracy and modernity.
The rights to health and to culturally respectful care are inextricably linked in the documents supporting Peruvian Maternal Health Policy. Strategies of Intercultural Birthing and Maternal Waiting Houses were purported to reduce maternal deaths, while extending the right to health to marginalized indigenous women. Based on 17 months of field research in Peru, I argue that the narrow focus on achieving “good numbers” creates and sustains coercive modes of strategy applications. As a result, the on-the-ground implementation of these innovative strategies made them incompatible with right to health and culturally respectful care approaches.
Lynn M. Morgan
The Costa Rican Constitutional Court banned in vitro fertilization in 2000, citing the inviolability of life. Conservatives hoped the ban would initiate a hemispheric movement to protect the unborn. But in 2012 the Inter-American Court of Human Rights ruled that reproductive rights are human rights and that women’s rights take precedence over embryo rights. The episode precipitated a national identity crisis: how could a country that supports universal health care be labeled a human rights violator as a result of its efforts to protect nascent human life? Expanding the health and human rights framework helps us appreciate how IVF became Costa Rica’s human rights crucible.
Jennifer J. Carroll
In 2014, Russian authorities in occupied Crimea shut down all medication-assisted treatment (MAT) programs for patients with opioid use disorder. These closures dramatically enacted a new political order. As the sovereign occupiers in Crimea advanced new constellations of citizenship and statehood, so the very concept of “right to health” was re-tooled. Social imaginations of drug use helped single out MAT patients as a population whose “right to health,” protected by the state, would be artificially restricted. Here, I argue that such acts of medical disenfranchisement should be understood as contemporary acts of statecraft.
Undocumented Mexican immigrants have had to regularly confront a prohibiting health care system despite alienation, marginalization, and the threat of deportation. In this article, I explore the impact of political exclusion and alienating discourses on the health habitus of undocumented Mexican mothers through the narrative of one mother, Marta Garza, who finds herself at the painful intersection of political and medical alienation. Marta’s narrative reflects an analytical framework that centers undocumented motherhood as a space of necessary resilience and strain, wherein she is forced to advocate for her children’s health despite prohibitive barriers and dangerous potential consequences.
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.
|Following the Fukushima Disaster on (and against) Wikipedia: A Methodological Note about STS Research and Online Platforms|
Science and technology studies is famous for questioning conceptual and material boundaries by following controversies that cut across them. However, it has recently been argued that in research involving online platforms (Wikipedia, Facebook, Twitter, etc.), there are also more practical boundaries to negotiate that are created by the variable availability, visibility, and structuring of data. In this paper, I highlight a potential tension between our inclination toward following controversies and “following the medium” and suggest that sometimes following controversies might involve going “against platforms” as well as with them. I will illustrate this dilemma through an analysis of the controversy over the coverage of the Fukushima disaster on English language Wikipedia, which concerns boundaries between expert and lay knowledge but also the social and technical functioning of Wikipedia itself. For this reason, I show that following the controversy might mean making use of less formatted and less obvious data than Wikipedia normally provides. While this is not an argument against the use of automated digital research tools such as scrapers, I suggest that both quantitative and qualitative researchers need to be more willing to tweak their approaches based on the specificities of the case.
Robert M. Geraci
An ethnographic approach to the South Indian festival Ayudha Puja reveals that the celebration plays a role in the construction of scientific communities. Ayudha Puja has the ability to absorb westerners, non-Hindus, and non-Brahmins into Indian science and engineering communities and is thus widely practiced in South Indian industry and academia. The practice of Ayudha Puja thus parallels what M. N. Srinivas labels “Sanskritization.” Within India, the process of Sanskritization refers to the adoption of high-caste habits and diet by upwardly mobile lower-caste communities. While not actually an example of Sanskritization, participation in Ayudha Puja is analogous to that process: by joining a Hindu rite within the scientific and professional workspace, outsiders become part of local laboratory, department, or office culture. Such practices reveal the need for scholars to investigate scientific community building outside the domain of how scientists reveal new facts about the world.
Marine Al Dahdah
Information and communication technologies are increasingly used for development in the Global South, and mHealth (health assisted by mobile technologies) plays key role. This paper analyzes the particular relationship to science that characterizes a global maternal mHealth program deployed in Ghana and India. Using science and technology studies (STS), this research relies on qualitative interviews conducted between 2014 and 2016 with funders, implementers, and beneficiaries of this mHealth program. This story begins with a randomized controlled trial, a biomedical experiment with a strong positioning regarding science and the production of evidence. But rapidly the scientific stance disappears to give way to the testing and marketing of a product for the digital economy. From science to market, this paper offers to revisit a classical STS topic through the lens of mHealth. It shows how the various experimental forms taken by this project fundamentally diverge from scientific methods and evidence production and at the same time how it nurtures an ongoing instrumental relationship with science. Thus, from clinical research to product marketing, this paper highlights the tenuous link between evidence-based and market-based mHealth in the Global South.
Rafaela Granja, Helena Machado
Familial searching is a technology that detects genetic relatedness. The term is generally used to refer to searches conducted in criminal DNA databases to identify criminal suspects through their connection with relatives. Beyond criminal investigation purposes, familial searching might also be used for the identification of unknown bodies and missing persons. The United Kingdom and Poland are cases that illustrate the variability of familial searching meanings, uses, and regulations. In the United Kingdom, familial searching is regulated by exceptionality and is mainly used for the identification of suspects in serious criminal cases. In Poland, familial searching is regulated within the framework of expanding the scope of its application to the search and/or identification of missing persons. Drawing on interviews with diverse key stakeholders in the United Kingdom and Poland, we address the ethical controversies of familial searching in the field of criminal investigation and in the domain of missing persons together. We argue that the views of stakeholders about the ethical controversies of familial searching lead to prescribing specific notions of social risks, public good, and the accountability of the state.
Focusing on the controversial birth control pills Yaz and Yasmin, this article explores how debates about the safety of these drugs have materialized in risk evaluations and the management of technological risk. Drawing on in-depth interviews with stakeholders and content analysis of legal, medical, and regulatory documents, I highlight how professional contraceptive risk assessment is characterized by systemic uncertainty and doubt, resulting in increased responsibility for users themselves to manage the drugs’ potentially increased risks of venous thromboembolism. The analysis centers on three key areas in the assessment process that denote disagreement: risk measurement in postmarket surveillance data, the distinctiveness of the drugs’ benefits when compared to other contraceptive technologies, and the weighing of the risks and benefits against each other. While professionals negotiate uncertainty both in epidemiological research and in clinical practice, users are constructed as agents who should manage risk individually. Such processes are underlined by a diffusion of responsibility in the systemic management of contraceptive risk. This article suggests, more broadly, that medical technologies can be conceptualized as artifacts that are instrumental in the dispersion of risks.
Chua Hui Ching Emily
Through a consideration of the Singapore government’s moves to encourage citizens to create innovative, high-technology enterprises—or to become ‘technopreneurs’—this essay looks at how government efforts to promote innovation, can articulate with prevailing national and social imaginaries, in ways that reshape notions of citizenship and nationhood and that have potential ramifications for the kinds of risks and burdens that citizens can be asked to bear. I show, specifically, how the new value of innovation is being incorporated into Singapore’s older narrative of national survival in a way that changes this narrative’s mode of emplotment from one of comedy to one of satire. Through this shift, promises of collective prosperity and progress, which are integral to the nation’s founding era of industrial manufacturing-based development, are withdrawn, while new notions of individual and financial risk and reward are introduced. I argue that attending to modes of emplotment may be a useful way to identify the broader entailments of different governments’ innovation policies and programmes.
The Ebola virus is unparalleled in its charismatic ability to ignite fear, anxiety and disgust at a scale grossly disproportionate to the number of lives it claims. As an archetypal ‘Emerging Infectious Disease’ (EID), this designation and the politics that have encircled it have provided Ebola with a conceptual space in which epidemiology and geography to splice together in the genesis and maintenance of its charismatic valence. Even before the West African outbreak of 2013–2016, Ebola was an ‘exceptional’ and ‘master status’ disease around which media attention mobilised to an unparalleled degree and effect. This paper argues that even if never directly conceptualised as such, Ebola is uniquely charismatic among EIDs and, more, this charisma can be understood geographically. To do so, the paper proceeds in three parts to explore how Ebola’s geographic charisma emerges from: (i) it being fixed ‘in place’ as something innately African; (ii) fears about the virus moving ‘out of place’ and (iii) its ‘potential energy’ or the persistent unease generated by the uncertainty of when and where the virus’s potential geographies will become actual.
Anne‐Marie Martindale, Pamela Fisher
Questions about the relationship between faces, ‘disfigurement’ and identity intensified following the first facial transplant (2005). Over a decade later, empirical research exploring the influence of acquired facial ‘disfigurement’ on embodied identity disruption and re‐formation remains limited. A common strand of thinking assumes identities are contained within faces. Commentators have suggested that identities can be diminished through ‘disfigurement’ and restored or replaced through reconstruction or transplantation. The authors question this claim and provide a conceptually informed, empirical alternative drawing on the results of a phenomenologically located, narrative study exploring identity shift in British adults following acquired ‘disfigurement’. Findings suggest that faces are important to humans and that identities can be disrupted in the aftermath of facial ‘disfigurement’. Though, the relationship is not simple and cannot be predicted by the degree of corporeal change. Disrupted, liminal and contradictory strands of identity emerged; pre‐existing identities were strengthened, new ones emerged, and other non‐related experiences were also influential. Nuanced relationality was at the heart of participant sense‐making. Consequently, the authors reject the idea that identities are contained within faces and call for the development of a wider social and relational facial phenomenology to more comprehensively explore this fascinating, multifaceted relationship.
Stefan Timmermans, Ashelee Yang, Melissa Gardner, Catherine E. Keegan, Beverly M. Yashar, Patricia Y. Fechner, Margarett Shnorhavorian, Eric Vilain, Laura A. Siminoff, David E. Sandberg
Based on audio recordings of consultations in three U.S. paediatric multidisciplinary Disorders of Sex Development‐Intersex clinics, we examine the process of gender assignment of children with “atypical” genitalia. Rather than fully determined by the presence of biological sex traits, the gender assignment discussion hinges on how clinician and parent collaboratively imagine different aspects of what constitutes being a gendered person. They orient towards the potential for sexual intimacy, fertility, gender dysphoria, stigma, and gonadal cancer risk. While these futures remain inherently uncertain, clinicians and parents plan to mobilise gender socialisation and medical interventions to render their choice of gender a self‐fulfilling prophecy. Gender destinies capture that the child always had a specific, innate gender awaiting discovery, and presumes a project for medical and social monitoring, intervention, correction, and optimisation.
Charles Antaki, Joseph Webb
We report on how support workers sometimes over‐ride the wishes of people living with cognitive impairments. This can happen when they are both involved in some project (such as an institutionally‐managed game, a physical journey, an educational activity and so on). The support worker might use their deontic authority (to propose, decide or announce future actions) to do things that advance the over‐arching project, in spite of proposals for what are cast as diversions from the person with impairments. They might also use their epistemic authority (their greater knowledge or cognitive capacity) to trump their clients’ choices and preferences in subordinate projects. Not orienting to suggested courses of actions is generally interactionally dispreferred and troublesome, but, although the providers do sometimes orient to their actions as balking their clients’ wishes, they usually do not, and encounter little resistance. We discuss how people with disabilities may resist or palliate such loss of control, and the dilemmas that support staff face in carrying out their duties.
Pascale Bourret, Alberto Cambrosio
The recent development of cancer precision medicine is associated with the emergence of ‘molecular tumour boards’ (MTBs). Attended by a heterogenous set of practitioners, MTBs link genomic platforms to clinical practices by establishing ‘actionable’ connections between drugs and molecular alterations. Their activities rely on a number of evidential resources – for example databases, clinical trial results, basic knowledge about mutations and pathways – that need to be associated with the clinical trajectory of individual patients. Experts from various domains are required to master and align diverse kinds of information. However, rather than examining MTBs as an institution interfacing different kinds of expertise embedded in individual experts, we argue that expertise is the emergent outcome of MTBs, which can be conceptualised as networks or ‘agencements’ of humans and devices. Based on the ethnographic analysis of the activities of four clinical trial MTBs (three in France and an international one) and of two French routine‐care MTBs, the paper analyses how MTBs produce therapeutic decisions, centring on the new kind of expertise they engender. The development and activities of MTBs signal a profound transformation of the evidentiary basis and processes upon which biomedical expertise and decision‐making in oncology are predicated and, in particular, the emergence of a clinic of variants.
Tim Rhodes, Lyuba Azbel, Kari Lancaster, Jaimie Meyer
In this paper, we reflect on health intervention translations as matters of their implementation practices. Our case is methadone treatment, an intervention promoted globally for treating opioid dependence and preventing HIV among people who inject drugs. Tracing methadone’s translations in high‐security prisons in the Kyrgyz Republic, we notice the multiple methadones made possible, what these afford, and the onto‐political effects they make. We work with the idea of the ‘becoming‐methadone‐body’ to trace the making‐up of methadone treatment and its effects as an intra‐action of human and nonhuman substances and bodies. Methadone’s embodied effects flow beyond the mere psycho‐activity of substances incorporating individual bodies, to material highs and lows incorporating the governing practices of prisoner society. The methadone‐in‐practice of prisoner society is altogether different to that imagined as being in translation as an intervention of HIV prevention and opioid treatment, and has material agency as a practice of societal governance. Heroin also emerges as an actor in these relations. Our analysis troubles practices of ‘evidence‐based’ intervention and ‘implementation science’ in the health field, by arguing for a move towards ‘evidence‐making’ intervention approaches. Noticing the onto‐politics of health intervention translations invites speculation on how intervening might be done differently.
Sarah Maslen, Deborah Lupton
This article presents findings from a qualitative study concerning Australian women’s use of Facebook for health and medical information and support and the implications for understanding modes of lay knowledge and expertise. Thinking with feminist new materialism theory, we identify the relational connections, affective forces and agential capacities described by participants as technological affordances came together with human bodily affordances. Affective forces were a dominant feature in users’ accounts. Women were able to make relational connections with peers based on how valid or relevant they found other group members’ expertise and experiences, how supportive other members were, how strong they wanted their personal connection to be and how much privacy they wanted to preserve. We identified three modes of engagement: 1) expertise claims based on appropriation and distribution of biomedical knowledge and experience; 2) sharing experiential knowledge without claiming expertise and 3) evaluation and use of knowledge presented by others principally through observing. We conclude that an ‘expert patient’ is someone who is familiar with the rules of engagement on sites such as Facebook and is able to negotiate and understand the affects and levels of disclosure and intimacy that such engagement demands.
This article builds on recent scholarship in medicine, science and technology illuminating the role of place and materiality in medical work. Drawing on ethnographic observations and qualitative interviews with US psychiatrists, psychologists and clinical social workers, I examine how the therapy office shapes psychoanalytic psychotherapists’ efforts to understand their patients’ unconscious conflicts. The concepts of ‘laboratory’ and ‘field’ frame my discussion of the material set up of the clinical room and the relational practices it fosters. I show that psychoanalytic practitioners try to approximate ‘laboratory conditions’ that insulate patients’ problems from their everyday contexts and ensure a sense of stability. I also demonstrate that these clinicians’ work depends on revealing personal preferences in the therapy room and fostering therapeutic relationships that resemble those in patients’ everyday lives, making the office akin to the ‘field’. The office thus becomes epistemically productive through therapists’ management of the paradoxical relationship between laboratory and field.
This study examines how gender attitudes moderate the relationship between employment and depressive symptoms using data from the 1987 to 2006 waves of the National Longitudinal Survey of Youth 1979 Cohort. Results indicate that at age 40, the association of employment with reduced symptoms of depression is greatest for mothers who had previously expressed support for traditional gender roles. This finding was robust to controls for prior depressive symptoms. In contrast, the association of employment and depressive symptoms at age 40 does not vary by earlier gender attitudes among childless women. Results suggest that in light of women’s disproportionate share of domestic responsibilities and limited employer supports for parents, skepticism over mothers’ ability to “do it all” may mitigate the stress of work-family role strain and allow mothers with more traditional gender attitudes to receive greater protection against depressive symptoms from employment.
Stephanie M. Koning
Chronic conflict and displacement carry consequences for personal and social violence. How is violence embedded in displacement-related histories and ongoing circumstances? How might it underlie social and health inequities in host countries? For addressing these questions, I offer a new approach to conceptualizing and measuring displacement contexts and the structural violence embedded therein. I present the empirical case of the Thai-Myanmar border. Myanmar’s civil conflict has fueled one of the largest and most chronically displaced populations globally. Thailand’s border population has consequently grown with people displaced from the varied conflict-related circumstances within Myanmar. I administered a novel survey in two sub-districts along Thailand’s northern border with Myanmar in 2016–17. With data from 520 respondents, I used clustering of life events and circumstances to uncover displacement-related contexts and violence. I uncovered livelihood- and security-based threat contexts, which disproportionately affected ethnic minority women. Among women from Myanmar, past military occupation and acute violence co-occurred with unexpectedly low perceived past oppression—indicative of covert everyday violence. In contrast, women who fled home destruction or deprivation, but often less overt military violence, were more likely to perceive oppression. Women born in Myanmar also experienced acute potential violence at the border, including severe livelihood and security threats. These threats were most prevalent among women that experienced the most forceful and abrupt displacement. This study uses a person-centered perspective to characterize and measure violence embedded in displacement, including the structural violence against women that is perpetuated across displacement contexts and embodied over time.
Stephanie Law, Amrita Daftary, Carole D. Mitnick, Keertan Dheda, Dick Menzies
Despite the importance of patient-provider trust identified in earlier research on tuberculosis (TB) care, there has been no in-depth exploration of its determinants and how it affects TB patient experiences. We conducted a constructivist grounded theory study to explore the process of patient-provider trust in the context of TB care. This study took place in Cape Town, South Africa, an urban setting with a high prevalence of TB, and where treatment for TB is provided free-of-charge. We used theoretical sampling to select participants (TB patients and providers) from four public primary care clinics and one public TB hospital between Dec. 2015 to May 2017. We conducted in-depth, semi-structured interviews with 33 adult TB patients and 26 TB providers (including doctors, nurses, counsellors and community health workers). Interviews were transcribed and analyzed using a constant comparative approach. Our resultant theory, entitled “Disrupting a cycle of mistrust”, describes a cycle of mistrust between TB patients and their providers that is grounded in health system norms and guidelines, and in subsequent provider and patient actions. This cycle is disrupted when providers develop and demonstrate trust towards their patients, which in turn builds patient trust in them and promotes positive treatment experiences. This theoretical model demonstrates the connection between structure (health system, local norms) and agency (individual practices and behaviours), and shows how the rigidity of current global TB treatment practices undermines opportunities to establish patient-provider trust. The model should guide future research on measuring and building patient-provider trust in TB care, and motivate for a new TB treatment paradigm that focuses more on patient-provider trust, and less on patient supervision and mistrust.
Michael J. Deml, Julia Notter, Paulina Kliem, Andrea Buhl, … Philip E. Tarr
Complementary and alternative medicine (CAM) providers’ roles in parents’ decision-making about vaccinations for their children have only recently begun receiving research attention, despite studies showing CAM to be used by 25–50% of the population in Western countries. This article examines how CAM practitioners discuss vaccinations with parents in Switzerland, with a focus on childhood vaccinations and human papillomavirus (HPV) vaccinations. We describe how the CAM providers we interviewed (N = 17) and observed during vaccination consultations (N = 18 observations with 5 providers) employed individualized approaches to vaccination. Triangulation of qualitative evidence from interviews and observations allowed us to analyze their discourses and descriptions of experiences (i.e. what they said) and their practices in situ (i.e. what they did). Evidence gathered shows that practitioners framed vaccination decisions as choices at individual and family levels rather than focusing on public health benefits and consequences. They articulated their perspectives in terms of personal clinical experiences and parents’ wishes, concerns, and contexts. Such findings challenge recurring narratives depicting CAM providers as categorically anti-vaccination and suggest that approaches to address vaccine hesitancy in clinical practice could benefit from communication and relational approaches similar to those demonstrated by participants in this study. Such approaches include taking time to understand parents’ wishes, involving them in vaccination decisions, and taking their concerns seriously.
Daryl Martin, Sarah Nettleton, Christina Buse
This article presents research on the architecture of Maggie’s Centres, a series of buildings for those with cancer, their families and friends. In particular, we explore the way in which their architectural atmospheres are spoken of by architects who have designed individual Maggie’s Centres, in interviews with staff members and volunteers in the buildings and in focus groups with visitors to their sites. We bring together qualitative research from two separate projects, and present findings from interviews, across the UK and internationally, with 66 visitors, 22 staff members and 7 architects of Maggie’s Centres. How our research participants discussed the atmospheres of their Maggie’s Centres is broken down into an analysis of, respectively, how building materials are used in these buildings; how colour and light are experienced in the buildings, and how the shape of the buildings in themselves affect the ways in which people use the spaces. These separate aspects of the buildings combine to become what can be described as the generators of architectural atmospheres. We discuss how architects, staff members, volunteers and visitors translated their intuition of intangible atmospheres into a recognition of architectural qualities, and linked these to questions of care. Maggie’s Centres, we argue, are emotionally charged buildings that shape the ways in which care is staged, practiced and experienced in everyday ways, through the orchestration of architectural atmospheres. We use the example of Maggie’s Centres as a comparison with how social scientists have characterised the design of mainstream hospital settings, in order to draw out the implications for questions of healing and recovery from illness, and how buildings may hold the potential to affect care.
Mariavittoria Cicellin, Adriana Scuotto, Paolo Canonico, Stefano Consiglio, Lorenzo Mercurio
The cost of medical treatments may undermine timely and effective access to healthcare. We believe it is useful to examine innovative business models recently introduced in European countries, borrowing from less developed economies. This paper aims to analyze new business models of healthcare service provision that have recently been introduced in Italy, and its social component. In particular, we analyze the low cost business model in Italian healthcare. We carried out a comparative case study of three Italian low-cost organizations. The cases were selected using four social criteria: start-up capital; social value proposition; social value equation; and social profit equation. From the comparative case study, six main themes emerged: 1. Social relationships; 2. recruiting and engagement of medical and nursing personnel; 3. economies of scale; 4. cross subsidization; 5. management of financial surpluses; 6. patient involvement and participation. The cases reveal new ways of healthcare service provision and unravel innovative organizational dimensions falling into the low cost business model. The organizations both maximize profit and respond to the social need for healthcare at relatively low costs. The low cost business model is therefore able to respond to the demand for affordable healthcare, while providing social innovation.
Jan Saarela, Maria Stanfors, Mikael Rostila
Studies on partners’ mutual receipt of benefits constitute a growing research field in the way individual health and health-related decisions depend on social relations. This paper provides the first study on the mutual receipt of sickness allowance. We analysed married and cohabiting couples’ receipt of sickness allowance and disability pension by estimating discrete-time hazard models for individuals aged 40–65 years, using longitudinal register data from Finland. The data cover the period 1987–2011, and allowed us to explore socioeconomic and demographic variables at both the individual and couple level. We found strong and long-term interrelations in receipt behaviour and dependencies across benefit types. The risk of receiving sickness allowance increases by 50 per cent during the first years after the partner’s first receipt of the same benefit, while the risk of receiving disability pension is twice as high even five years after the partner’s receipt of the same. Women appear to be more instrumental than men in the production of health within the couple, even in a context of high level of state support, gender equality and female labour force participation. Their receipt of disability pension is more related to the male partner’s receipt than vice versa. For sickness allowance receipt, the gender asymmetry is small. Mutual benefit receipt of benefits may relate not only to collateral health effects but also to shared preferences and partner selection. We cannot distinguish between the mechanisms. However, couples with more economic and social resources seem to be more efficient in joint decision making. Correlations are particularly strong in the immediate term, and for couples who are highly educated, for those with high income, and for those with children in the household. More effective policies may be needed to equalise information regarding benefits, and monitor the use, and potential misuse, of these health benefits.
Luke Parry, Claudia Radel, Susana B. Adamo, Nigel Clark, … Jason Vargo
This paper scrutinizes the assertion that knowledge gaps concerning health risks from climate change are unjust, and must be addressed, because they hinder evidence-led interventions to protect vulnerable populations. First, we construct a taxonomy of six inter-related forms of invisibility (social marginalization, forced invisibility by migrants, spatial marginalization, neglected diseases, mental health, uneven climatic monitoring and forecasting) which underlie systematic biases in current understanding of these risks in Latin America, and advocate an approach to climate-health research that draws on intersectionality theory to address these inter-relations. We propose that these invisibilities should be understood as outcomes of structural imbalances in power and resources rather than as haphazard blindspots in scientific and state knowledge. Our thesis, drawing on theories of governmentality, is that context-dependent tensions condition whether or not benefits of making vulnerable populations legible to the state outweigh costs. To be seen is to be politically counted and eligible for rights, yet evidence demonstrates the perils of visibility to disempowered people. For example, flood-relief efforts in remote Amazonia expose marginalized urban river-dwellers to the traumatic prospect of forced relocation and social and economic upheaval. Finally, drawing on research on citizenship in post-colonial settings, we conceptualize climate change as an ‘open moment’ of political rupture, and propose strategies of social accountability, empowerment and trans-disciplinary research which encourage the marginalized to reach out for greater power. These achievements could reduce drawbacks of state legibility and facilitate socially-just governmental action on climate change adaptation that promotes health for all.
Special Issue: Transversal Posthumanities
Rosi Braidotti, Matthew Fuller
What are the parameters that define a posthuman knowing subject, her scientific credibility and ethical accountability? Taking the posthumanities as an emergent field of enquiry based on the convergence of posthumanism and post-anthropocentrism, I argue that posthuman knowledge claims go beyond the critiques of the universalist image of ‘Man’ and of human exceptionalism. The conceptual foundation I envisage for the critical posthumanities is a neo-Spinozist monistic ontology that assumes radical immanence, i.e. the primacy of intelligent and self-organizing matter. This implies that the posthuman knowing subject has to be understood as a relational embodied and embedded, affective and accountable entity and not only as a transcendental consciousness. Two related notions emerge from this claim: firstly, the mind-body continuum – i.e. the embrainment of the body and embodiment of the mind – and secondly, the nature-culture continuum – i.e. ‘naturecultural’ and ‘humanimal’ transversal bonding. The article explores these key conceptual and methodological perspectives and discusses the implications of the critical posthumanities for practices in the contemporary ‘research’ university.
The Digital Subject: People as Data as Persons
This essay explores the return of the subject in the computational context, which I address as a digital subject. This digital subject encompasses a digital identifier, correlations in data or a data profile, moving between biological characteristics and symbolic expression. I focus on the processes through which digital subjects are constructed by matching, correlating, modelling, as well as how they become enactive. The ways of pulling data together into a digital subject is often presented as a logic of fact, where data is equated with documentary evidence. Instead, I propose the notion of the distance in which digital subjects are produced. Indexicality comes from outside of data, whereas the regard for the thick distance becomes a mark of the form of knowledge. I conclude by arguing for a posthumanities approach that establishes the distance while allowing for different subjects to be called upon.
In a 1955 lecture the physicist Richard Feynman reflected on the place of doubt within scientific practice. ‘Permit us to question, to doubt, to not be sure’, proposed Feynman, ‘it is possible to live and not to know’. In our contemporary world, the science of machine learning algorithms appears to transform the relations between science, knowledge and doubt, to make even the most doubtful event amenable to action. What might it mean to ‘leave room for doubt’ or ‘to live and not to know’ in our contemporary culture, where the algorithm plays a major role in the calculability of doubts? I propose a posthuman mode of doubt that decentres the liberal humanist subject. In the science of machine learning algorithms the doubts of human and technological beings nonetheless dwell together, opening onto a future that is never fully reduced to the single output signal, to the optimised target.
The timeline of the Anthropocene – a geological epoch that Paul Crutzen and Eugene Stoermer say began in the late 18th century with the invention of the steam engine – seems like a brief and inconsequential blip, against the time scales embodied by the microbial communities. Wolbachia bacteria predate Anthropos by some 150 million years, and will likely outlast us. Wolbachia bacteria are worthy of their own geological epoch because they offer a fresh vantage point on one of the most pressing ethical questions of our time: ‘How should we love in a time of extinction?’ Narratives about the Wolbachiacene have the potential to disrupt the overwhelming stories of tragedy orbiting around Anthropos, with disquieting and generative accounts of interspecies romance. Wolbachia often perform queer tricks inside their invertebrate hosts. In some host species these bacteria induce parthenogenesis – completely eliminating males from the population. Wolbachia can also transform genetic males into reproductively viable females.