Here’s a selection of articles of interest published last month. Enjoy!
How do people who have been labeled “autistic” negotiate the meaning of this label? How, in other words, do autistic people understand and subsequently work to shape the fluid and unstable — but at the same time undeniably significant — concept of autism? To try to answer this question, I carried out a 12-month period of ethnographic fieldwork among several small communities of autistic adults from various parts of England. These groups’ activities consisted of weekly, biweekly or monthly social gatherings, as well as the occasional political demonstration, support group session or film screening, to name just a few examples. I was fortunate to have been welcomed to attend these activities as a participant-observer and to have met with most members of these groups for in-depth interviews.
In addition to their regular social meetings, many of my interlocutors were active in online spaces. They would author blogs, upload videos, design websites, post in forum discussions, engage in chat-room conversations, participate in social network sites, share art, play games and reside in virtual worlds. Online environments serve as a particularly accommodating platform for the construction of new appreciations of autism because they afford styles of communication where the typical challenges of interacting socially become less pronounced. The popularity of such activities among my interlocutors highlighted the need for a holistic approach to ethnographic fieldwork that would integrate the online and the offline, such as was suggested by Miller and Horst, for example. A combined ethnography of this sort — that is, actual as well as virtual —not only would enable a wide array of methods, but can be especially useful in demarginalizing the voices of members of socially marginalized groups.
This article draws primarily from the online portion of my project. However, making sense of this material involved shifting back and forth between notes from my online and offline field sites to foreground the “inter-indexical” relationship between the two. Here, I am especially interested in one common theme that seemed to underscore and accentuate the accounts of many of my autistic interlocutors, in both spheres. Namely, their frequent use of a rhetoric of emotions, which plays an important role in their claiming of the autism label.
November’s issue of Contemporary Drug Problems is a Special Issue: Gender and Critical Drug Studies.
Gender and Critical Drug Studies: An Introduction and an Invitation
Nancy D. Campbell, David Herzberg
This introduction to conjoined special issues of Contemporary Drug Problems and Social History of Alcohol and Drugs, the journal of the Alcohol and Drugs History Society, began with a 2015 symposium at the Baldy Center for Law and Social Policy at the University at Buffalo (SUNY), organized by co-editors Nancy D. Campbell and David Herzberg. The symposium called for incorporating gender analysis into the rapidly developing scholarship on drug use, drug trade, drug science, drug treatment, and drug policy in the United States. The special issues showcase articles that are part of a vibrant body of historical, sociological, and anthropological scholarship that explores the differential effects of drug policy, focusing on how gender—in dynamic relationship to race, class, and sexuality—is integral to virtually every aspect of drug crises including (but not limited to) the relationship between drug policy, drug treatment, and the development of mass incarceration. Gender matters at every level from the intimate and highly personalized to the broad cultural and political forces that disparately apportion vulnerability within drug commerce and the U.S. prison–industrial complex.
The WOMAN Center was a women’s drug treatment program focused on heroin that existed in Detroit’s Cass Corridor neighborhood between 1971 and 1985. During this period, successful advocacy by the Modern Alcoholism Movement was establishing the “disease model” as the norm in the expanding alcoholism treatment realm; therapeutic communities and methadone maintenance vied for similar prominence in the world of drug treatment. The WOMAN Center approached drug dependence quite differently. Its founders’ allegiance to ideas about grassroots organizing led them to see drug use and related problems as predictable responses to community chaos and blight. Their treatment program hinged on linking individual and community empowerment, achieved through drug cessation but also through consciousness-raising and leadership training. This theory was difficult to operationalize and the WOMAN Center’s tenure was short-lived. This article argues that it is nevertheless an important moment in the theorization of women’s alcohol and other drug problems: WOMAN’s intersectional analysis of gender, which drew special attention to the ways that capitalism and racism affect women’s decisions to use drugs, is a road not taken for women’s treatment. Attention to such a politicized vision of recovery is important as the U.S. grapples with the present wave of narcotics use in rural and rust-belt communities.
Over the course of the last two decades, drug treatment programming has become increasingly privatized in the U.S. correctional system. Drug treatment and related rehabilitative and reentry services are a multibillion dollar (USD) a year industry. In this article, I trace the origin of this transformation to an unlikely source: women’s prisons during the War on Drugs. Correctional facilities for women provided a useful testing ground for new models of carceral drug treatment at a time when rehabilitation was otherwise rejected by policy makers as too “soft” a response to crime and drug use. Gendered assumptions about punishment, rehabilitation, and addiction coupled with racial hierarchies governing punishment policies paved the way for private vendors to develop, market, and ultimately expand carceral drug treatment to a broad array of correctional venues and populations. To make this case, I analyze ethnographic data collected from one such private vendor and demonstrate how they utilized assumptions about gender and race to upend more traditional models of prison profiteering and pioneered the means through which rehabilitation could operate in service of profit.
The current “opioid epidemic” provides an opportunity to identify age-old social anxieties about drug use while opening up new lines of inquiry about how and why drug use epidemics become gendered. This paper reflects on the intertwined phenomena of opioid and benzodiazepine prescribing to U.S. women to examine how gender, race, and class inform social anxieties about reproduction and parenting. Multiple discourses abound about the relationship between women and the “opioid epidemic.” Epidemiological reports attribute premature death among White women to the deadly combination of opioids and antianxiety medications. The National Institute on Drug Abuse reports that “every 25 minutes a baby is born suffering from opioid withdrawal,” leading to costly hospital stays for infants and the potential for mother–child separation and other forms of family adjudication postpartum. Primary care providers are reluctant to distinguish diagnoses of chronic noncancer pain from anxiety among their female patients. Taken together, these discourses beg the question: What exactly are we worried about? I compare and contrast the narratives of two anxious women on opioids to raise larger structural questions about pregnancy, parenting, and drug use and to interrogate the public narrative that women on opioids threaten the American family and thwart the American Dream.
This article examines the symbolic work of gender as it intersects with race and class in popular media and in local community discourses surrounding the “suburban opioid epidemic,” in which national drug policies, and White futures, are thought to be at stake. The study starts with an analysis of the White, middle-class, female “new face of addiction” that has been cultivated by national press coverage of prescription opioid-cum-heroin overdoses in the U.S. and then turns to interviews with community physicians in the front line of a clinical response to the “epidemic” in Staten Island, a White suburban enclave within New York City that is experiencing 3–4 times the opioid overdose rate of any other City borough. Physicians use the language of family membership to indicate identification with their opioid addiction patients, and many go to lengths to provide holistic care and to incorporate family support for their patients despite lack of insurance reimbursement. White, educated patients describe buprenorphine as a way to maintain their professional identities, while low-income Black and Latino patients describe pharmaceutical maintenance as a socially alienating arm of the criminal justice system. Together, media and clinical responses make up strategies of White racial rescue from threatened social reproduction in an era of substance-induced White downward mobility.
In this study, we show how household health, economic instability, and food insecurity are inextricably linked and how disruptions in individual health or income create cumulative and interdependent challenges faced by multiple household members. Drawing upon semistructured focus groups with English- and Spanish-speaking clients of an urban food pantry, we demonstrate: (1) the impact of economic scarcity on health, (2) the impact of one household member’s health on the health and food security of all household members, and (3) food-sharing behaviors among family and social networks, including multigenerational families and nonkin individuals. We identify the gap in the literature between household-level assessments of food insecurity and individual-level health reports, which may obscure poor health among other household members. Understanding the social and family context of health and food insecurity may inform future interventions that address the interrelated challenges of diverse and disadvantaged households and communities.
Women’s Evolving Roles in Drug Trafficking in the United States: New Conceptualizations Needed for 21st-Century Markets
Tammy L. Anderson, Philip R. Kavanaugh
Drugs and crime research and theory in the United States originated after President Nixon declared the first War on Drugs in 1971. This research agenda promised to reveal the scope, dynamics, and impact of the drugs–crime relationship, thus promising solutions for the country’s drug problems. The initial focus was on drug trade violence and, as a result, produced scholarship mostly on men’s involvement in drug distribution, purchasing, and related crimes. It paid little attention to women’s involvement and failed to consider how gender might shape the drugs–crime relationship. By the early 1980s, however, studies began to appear on women’s experiences and addressed the role of gender in U.S. street-based illegal markets for crack cocaine and heroin. These studies revealed women’s relative powerlessness or supporting roles to domineering males in illegal, street-based drug markets. Today, drugs of concern in the U.S. originate and are sold and purchased through both legal and illegal channels that often work in tandem. This interplay requires us to rethink the drugs–crime relationship. Our article seeks to provoke new thinking and research on how 21st-century drug trends might reshape the gendered nature of drug selling across both legal and illegal markets and the gray area in between. In specific terms, we review the nature of women’s involvement in newer drug markets and consider how their involvement differs from that of men and how theory and research might move forward in addressing these changes. Our conclusions, and those reached by others in this issue, speak to the centrality of gender scholarship in research and policy on drugs and crime currently and into the future.
This article explores autoethnography as one way of doing feminist research in the drugs field. By telling my story during my 40 years experience as a feminist researcher in the drugs field, I aim to help those practicing critical drug scholarship to become familiar with this methodology as a viable way of employing a gender analysis, an employment that is the focus of this special issue. This paper is divided into five related discussions. First, I explain what feminist autoethnography is. Second, I look at how doing feminist “drugs” autoethnography helps to develop empathy. Third, I describe the methods and use of data employed in this paper. Fourth, I tell my story chronologically from 1972 to the present time. Lastly, as with many autoethnographies, my analysis of my “story as data” is left to last and I discuss the political implications of my experiences, while “feeling about” empathy as resonance with the other.
Never too late for pleasure: Aging, neoliberalism, and the politics of potentiality in Denmark
Henrik Hvenegaard Mikkelsen
Health promotion in the Danish welfare state increasingly consists of helping people to identify and realize their inner potential for health and happiness. Such a “politics of potentiality” might seem to reflect the widespread neoliberal economic deregulation and austerity policies that have in recent decades marked public health sectors throughout the industrialized world. But in the encounter between the Danish state and its aging citizens, all moral demands converge on the imperative of identifying how citizens may become subjects who live up to certain definitions of what constitutes pleasure and self-realization. This represents an instantiation of neoliberal health promotion that targets the sense of loss that people associate with their unactualized potentials—their unlived lives.
Cultural Anthropology (Open Access)
Chemo-Ethnography: An Introduction (open access)
Nicholas Shapiro and Eben Kirksey
Chemicals have seeped into the ethnographic imaginary. Anthropologists have long been tracing the material, toxicological, and neurological valences of molecular dreamworlds, growing pharmaceutical markets, and landscapes haunted by industrial capitalism (e.g., Fortun 2001; Hayden 2003; Murphy 2006; Dumit 2012; Jain 2013). Sensing technologies and collaborations with allies in other disciplines are also allowing ethnographers to study chemical species in water, soil, air, human bodies, and emergent ecological assemblages. Theoretical and empirical research is focusing on technoscientific environmental constructs, civic public forms, noninnocent optimism, state abdication, and capital despoilment. Processes like sublimation and combustion are informing nascent approaches to writing culture in the Anthropocene (Shapiro 2015; Povinelli 2017). Chemicals are becoming increasingly useful linking figures as ethnographers follow complex, multisited, and multiscalar phenomena (Bond 2013; Hardon, Idrus, and Hymans 2013; Myers 2015; Romero et al. 2017; Sunder Rajan 2017; Murphy 2017).
Chemical ethnography, or chemo-ethnography, owes intellectual debts to Lochlann Jain (2013, 24), who has ushered “cancer and its identities out of the closet and into a space not of comfort, or righteous anger, but of mourning, a space where the material humanity of suffering and death informs communicative and collective action.” The stomach-wrenching experience of chemotherapy offers a suitably complex inroads to other encounters with the pharmakon—a poison that doubles as a cure (Stengers 2011). Scaling up Jain’s call for communicative and collective action, we are concerned with a broader suite of chemicals that create possibilities for life while simultaneously enfeebling bodies or multispecies worlds (cf. Roberts 2010). Chemo-ethnographers are starting to conduct research on economic, personal, political, and sentimental relationships that have emerged with modern chemistry (e.g., Chen 2012; Agard-Jones 2013; Graeter 2017; Feser, forthcoming).
What Gets Inside: Violent Entanglements and Toxic Boundaries in Mexico City (open access)
Elizabeth F. S. Roberts
Entanglement is a key concept in contemporary anthropology and science and technology studies. By tracing the contingent and uncertain relations that endow objects with seemingly stable boundaries, entanglement allows us to see how such boundaries restrict our ability to know the world better. This article examines the concept of entanglement in the context of contemporary life in a working-class Mexico City neighborhood, Colonia Periférico, and a longitudinal environmental health project that studies the neighborhood’s residents. While entanglement has its uses, the entanglement of working-class bodies with globalizing processes like NAFTA and the ongoing War on Drugs shows that the concept has its limits. For working-class residents, life is already deeply entangled with chronic economic and political instability shaped through the violent ravages of transnational capital. Instead, I trace how residents in Colonia Periférico secure stability through toxic boundaries that protectively keep out the disruptive effects of police and public health surveillance. Colonia Periférico’s boundaries, which include a sewage-filled dam, cement dust, and freeway exhaust, are clearly entangled with residents’ bodies. They get inside. These entanglements are the price paid for a remarkable stability, in which children can play on the streets and attentive care for drug-addicted and disabled residents is part of everyday life. With the goal of knowing the world better, then, we might complicate celebratory calls for the uncertainty of entanglement by taking into account both the practices that make boundaries and what boundaries have to offer.
Care farms as a space of wellbeing for people with a learning disability in the United Kingdom (open access)
Suzanne Rotheram, Sarah McGarrol, Francine Watkins
People with a learning disability in the UK are increasingly choosing to spend their time on ‘care farms’ but there is limited research examining these spaces from their perspective. A qualitative research design was used to ask eighteen of these clients how care farms contributed to their health and wellbeing. For these participants care farms can be understood, using Fleuret and Atkinson’s (2007) framework, as a ‘space of wellbeing’ and as a positive and life-enhancing space. Positive language was used by participants to describe the farms contrasting with ne gative language describing other spaces and activities. Farms were identified as contributing positively to mental and social wellbeing.
Breaking Binaries? Biomedicine and Serostatus Borderlands among Couples with Mixed HIV Status
Asha Persson, Christy E. Newman & Jeanne Ellard
With recent breakthroughs in HIV treatment and prevention, the meanings of HIV-positivity and HIV-negativity are changing at biomedical and community levels. We explore how binary constructions of HIV serostatus identities are giving way to something more complex that brings both welcome possibilities and potential concerns. We draw on research with couples with mixed HIV status to argue that, in the context of lived experiences, serostatus identities have always been more ambiguous than allowed for in HIV discourse. However, their supposed dichotomous quality seems even more dubious now in view of contemporary biomedical technologies. Invoking the anthropological concept of “borderlands,” we consider how biomedicine is generating more diverse serostatus identities, widening the options for how to live with HIV, and eroding the stigmatizing serostatus binary that has haunted the epidemic. But we also ask whether this emerging borderland, and its “normalizing” tendencies, is concomitantly giving rise to new and troubling binaries.
In the United States, HIV is rendered a chronic condition, and viral transmission is minimized through strict adherence to pharmaceutical treatment. Treatment reduces viral loads to untraceable levels in the blood, a status known as “undetectable,” as determined by laboratory testing. For Haitians living with HIV in South Florida, “undetectable” has become more than a viral status; it is a means to know and govern themselves as moral actors and to survey and stigmatize others who remain “detectable.” The ethnographic evidence I present here suggests that Haitians adopt novel forms of subjectivity based on undetectability, producing identities entangled in biotechnical categorizations and dominant narratives of responsibility, morality, and health. Haitians’ experiences with these processes reveal the persistence of HIV stigmatization and the centrality of biomedical morality in mediating perceptions of inclusion, value, and worth of people living with HIV.
Funding in South Africa privileges HIV prevention campaigns underpinned by individual behavior change goals, despite over two decades of intervention but little reduction in national HIV prevalence. In response, civil society has begun calling for innovative interventions and ways of speaking about the epidemic. Employing framing theory, I analyze differences in how HIV/AIDS is characterized in public media and interrogate the knowledge politics underpinning a group of artists’ emerging attention to the nexus of affect, intersubjectivity, and epidemics within performance. I suggest this focus challenges but also complements dominant HIV intervention models by destabilizing common content, relations of power, and hierarchies of knowledge that shape normative health discourse and practice. Simultaneously, such performances reveal deep disparities between the neoliberal principles undergirding most global public health ideology, South Africa’s current political economy of HIV intervention, and the dynamic concerns of its HIV-affected constituents.
In this article, I investigate how particular discourses surrounding class specific understandings of sexual behavior and female morality shape awareness and views of the disease and personal vulnerability. Although both groups belong to the working class, those employed by the transportation board consider themselves government servants and, therefore, “respectable gentlemen.” Construction workers identify easily with their class position, recognizing and sometimes trying to live up to the stereotypes of free sexuality. These different perceptions directly affect their concern and awareness of risk factors for sexually transmissible infections and safe-sex practices. While the “respectable gentlemen” consider themselves invulnerable, the “street-savvy men” learned about risks and took precautions to prevent STIs.
Careful Words: Nursing, Language, and Emotion in Papua New Guinea
Papua New Guinean nurses work in a sociomedical system in which cultural and linguistic diversity are matters of pressing concern. Using data drawn from ethnographic research with PNG nursing students, I show how nursing education socializes nurses to take stances toward language and communication that impact their care practices. I argue that nurses’ use of language is shaped by their ethical commitments as educated Christians and indigenous concerns about the links between language, emotion, and health. In a resource-poor setting where health workers risk blame for structural inequalities, this “ethical metapragmatics” is an important but neglected facet of care work.
The Limits of Autonomy: Ideals in Care for People with Learning Disabilities (open access)
Jeannette Pols, Brigitte Althoff & Els Bransen
In the Netherlands, autonomy is a key ideal in visions of care for people with learning disability. This ideal can lead to tension when clients, in the opinion of their caregivers, overuse alcohol or drugs. In this article, we analyze how professional caregivers understand the ideal of autonomy in care for people with learning disability, and articulate the tacit attempts of caregivers to provide “good care,” which can be understood as care for relationships. This relational view includes caregivers, care recipients, and their networks and infrastructures in the vision of care.
A critical realist analysis is offered of a particular unresolved contention in modern psychiatric knowledge about the diagnosis of personality disorder (PD). With the publication of the most recent edition of the Diagnostic and Statistical Manual from the American Psychiatric Association in 2013, this diagnosis stood out as a point of reticence in a document, noted by its critics, for its diagnostic expansionism. Resources from critical realism are used to examine the weakness of the diagnosis and the real enough conduct that the medical codification subsumes. It is concluded that the psychiatric jurisdiction over those with a PD diagnosis now lacks credibility. However, the socio-ethical challenges that lay beneath the diagnosis and beyond its associated medical jurisdiction are not only real but are thrown into sharp relief by the critique offered, raising socio-ethical questions for all citizens.
Beyond ubiquity: Unravelling medicalisation within the frame of health insurance and health-policy making
Sarah Van den Bogaert, Ricardo A. Ayala, Piet Bracke
Besides being extensively studied by health sociologists, medicalisation has also become a term that frequently appears in mainstream discourses on health and illness. Recently, scholars started to acknowledge a greater complexity within medicalisation. This article is situated within this research tradition and draws on three recurring critiques on the validity of medicalisation; critique on the construct validity, internal validity and external validity. By examining the interests and network of health-policy stakeholders, this article attempts to unravel different mechanisms of medicalisation and demedicalisation within a social health insurance system. The empirical data for this article derive from 30 elite interviews with key informants from 18 organisations in Belgium. Key representatives of these organisations provided us with in-depth information about their political intentions and interests. This study provides empirical evidence that both medicalisation and demedicalisation are different processes that can occur simultaneously. Furthermore, in order to facilitate studies on medicalisation in an institutional context, this article proposes some indicators for medicalisation and demedicalisation.
Policy Challenges and Ethical Issues with the Breakthrough Technology: The Case of Synthetic Biology
Samuel Pang, Sam Youl Lee, Ji Yung Seul
Synthetic biology is an exciting field which has enormous potentials for solving various problems human beings are facing up such as genetic disease, food shortage and global warming. Many countries such as the United States, the United Kingdom and China have invested heavily in this field but the negative aspect of such scientific breakthrough draws little attention. Since the harms synthetic biology can cause is not certain, it is neither safe nor proper to leave it to the hands of only experts. Currently researches on synthetic biology are being conducted without proper public discourse and consideration. One of the reasons for the lack of public discussion on synthetic biology is the speed of the development in the field. The field is innovating so fast that people have little chance to digest the consequence of such advances. Also the confusion on the definition of synthetic biology contributes to the lack of proper public discussion on the issue. This article provides a new typology for definition of synthetic biology conceptualised by the authors and analyses the current state of synthetic biology in major countries. In addition, ethical issues associated with synthetic biology are discussed. Scientific transparency and participatory process are suggested as policy options to deal with them.
Amidst intensifying policy concerns with children’s wellbeing and development, healthcare professionals are required not only to assess risk of abuse and neglect, but to manage risk of ‘poor parenting’ more broadly. Drawing on 15 in-depth interviews and non-participant observations of 61 professional-family interactions, across four preventative public health services for children in the Netherlands, we explored how professionals accomplished such risk work amid intractable uncertainties. Building inferences from brief encounters with families, professionals gauged the extent to which they trusted parents to care ‘appropriately’. This trust developed most readily with parents experienced as ‘familiar’ by the largely middle-class female professionals. Harnessing Schutzian phenomenology, we analyse the related manifestations of social structure within the interactional-dynamics and lifeworlds of risk assessment. We argue that social structures of gender, class and ethnicity can be seen as influential both through the differing potential for ‘we-relationships’ to be formed and via the generalising and stereotyped knowledge applied in their absence.
Sociological research on medical discussions of lifestyle suggests that smoking patients may be seen as knowingly causing their medical problems. Therefore, it may be interactionally problematic for doctors to raise the issue of smoking cessation in relation to patients’ serious health problems. While a serious illness can be expected to bring to the fore the relevance of smoking cessation advice, it may also give rise to questions about patients’ right to treatment. This study uses conversation analysis to explicate how patients and doctors manage issues of responsibility in smoking cessation discussions in the face of a serious medical problem that strongly correlates with smoking. The findings show that whilst ill health can be referred to in a confrontational manner, it can also give smoking cessation a ‘now or never’ status that downplays patients’ responsibility for not having quit before. Based on these findings, the paper concludes that for warranting further smoking cessation advice, how doctors and patients verbalise the link between smoking and a serious medical problem matters more than whether they do so.
Contingent maternities? Maternal claims-making in third party reproduction
Katherine M. Johnson
The new reproductive technologies have significantly impacted definitions of motherhood. Historically, mothers were defined through the act of giving birth, but egg donation, embryo donation, and surrogacy disrupt this. Now multiple women can potentially claim maternity through gestational, genetic, legal, and social ties. Although there is some legal precedent for designating parentage, there is no simple solution to identify the ‘true’ mother. I address maternal claims-making in third party reproduction via a content analysis of US patient literature for infertile women. Major tensions arise over which link to privilege, especially regarding genetic versus gestational ties in egg donation versus surrogacy; however, adding embryo donation to the analysis illuminates another crucial dimension previously overlooked – that heterosexual women’s maternal claims are supported by their partner’s paternity claims. Ultimately, I argue that although reproductive organisational discourse carefully constructs credible options for maternal claims-making, contemporary reproductive medicine does not define maternity through assisted reproduction as a truly autonomous connection. Rather, maternity is highly contingent and thus potentially discreditable.
Dynamics between doctors and managers in the Italian National Health Care System
Giovanna M. Vicarelli, Emmanuele Pavolini
This article focuses on the changes in the Italian NHS by concentrating on patterns in the managerialisation of doctors. It addresses a series of shortcomings in studies on the response by doctors to managerialisation. The first is a shortcoming of theoretical and analytical nature. It is necessary to adopt a broader perspective whereby analysis considers not only the interaction between doctors and managers, but also the public control and regulation agencies that operate in that field. The second shortcoming is a methodological one. The literature on managerialisation is more theoretical than applied. It is necessary to adopt a strategy based on a plurality of methodologies and sources in order to focus attention on a national case (Italy in the present study), discussing the changes over time (from the beginning of managerialisation until today) and considering different groups within the medical profession. The outcome is a complex picture of the dynamics between doctors and managers which foregrounds the managerial co-optation processes of a small group of national health service doctors, the transition from strategic adaptation to forms of resistance against managerialisation by the majority of Italian NHS doctors, and the emergence of restratification processes among self-employed doctors working with the NHS.
It is well established that the drivers of medicalisation have shifted alongside changes in the institution of medicine. The process of medicalisation is no longer incited by macro processes of institutional prestige or control; rather, individual patients/consumers are pushing the process forward. The present study complicates this neat transition and examines the relationship between structure and agency using the case of assisted reproductive technology (ART), specifically the medicalisation of lesbian reproduction in the US. I explore individuals’ influence on and motivations towards medicalisation through 24 in-depth interviews with women in same-sex relationships who had ever attempted to become pregnant. In centring on their experiences, I find that while individual consumers may now propel medicalisation forward, oftentimes consumers’ motivations for doing so reside in the prestige and control of medicine. In other words, consumers now seek medicalisation precisely because of the process’s previous institutional drivers. In exploring what fuels the engine of medicalisation, the findings reveal its nuance and complexity.
Navigating the new, transplanted self: how recipients manage the cognitive risks of organ transplantation
Nicholas R. Cormier, Selina R. Gallo-Cruz, Renee L. Beard
The physiological risks of organ transplantation are well documented, but more poorly understood are the sociological ways in which organ recipients redefine themselves in reaction to physiological risks and social changes accompanying transplantation. This article analyses transplantation as a procedure that is not only physiologically risky but also poses risk to the social identity of the recipient, and explores how transplant recipients cognitively navigate transplantation surgery from waiting for to recovering after a transplant. It builds on previous sociological exploration of risk as a socially constructed process mediating experiences of health and illness with a focused contribution on explaining how individuals navigate risks posed to their social identities by major biophysical transformations. This article pointedly analyses narratives of fourteen organ recipients and the four dominant phases of identity management that emerged to create what we have coined as the new ‘transplanted self’, indicating the varied ways the individual social self emerges in response to the social risks of transplantation. We conclude that a better understanding of the recipient experience will contribute to improved care in the transplantation field.
The Actionability of Exome sequencing testing results
Tanya Stivers, Stefan Timmermans
Genomic tests such as exome sequencing have recently become an option for diagnosing patients. The tests allow clinical geneticists to sequence the majority of patients’ disease causing genetic variants. As a new technology, exome sequencing confronts the question of what the benefit is of this increased genetic information. Against a narrow perspective of clinical utility that emphasises tangible improvements in a patient’s disease management, professional organisations have argued that genomic sequencing should be considered beneficial if it helps families and society. Based on video-recorded observations of the return of exome sequencing results to parents of a child with disabilities in the clinic and in-depth interviews with these parents, we examine how genomic test results become actionable in the clinical encounter. We find that parents and clinicians marshal exome results beyond biomedical diagnostic and management goals to address questions about guilt for causing the disabilities and to secure access to disability-related services. We argue that genomic actionability rests on the interaction between the biological characteristics of genetic results and the predicaments facing parents of children with disabilities.
What is not, but might be: The disnarrated in parents’ stories of their child’s cancer treatment
Cecilia Vindrola-Padros, Eugenia Brage
The study of illness narratives is based on the premise that stories are told for a reason and storytellers make narrative decisions on what to include and leave out of a story, the style of narration, the place where the story is told and the audience. Through this narrative work, they situate themselves in particular ways and make sense of the illness and the world around them. In this article, we explore the disnarrated, a style of narration that features events that do not happen, but are nonetheless referred to in the story. The aim of the article is to illustrate the additional layers of meaning that can be uncovered from illness stories when attention is paid to what did not happen, but, yet, is still part of the story. We draw from a qualitative study carried out with 17 parents whose children were diagnosed with cancer and were receiving medical care in Argentina. We carried out narrative interviews with the parents and participant-observation in hospital areas and the hotels where they resided during treatment. The analysis of the interview transcripts was carried out using a holistic understanding of the narratives and focusing on the identification of themes that appeared disnarrated. The fieldnotes from the observations were used to contextualize the narrative analysis. The disnarrated, in its many manifestations, produced a layer of analysis of parents’ stories of treatment patterned by parents’ desires, hopes and fears. The disnarrated was used by parents to discuss alternative care trajectories and express fears regarding what the future would bring for the child and family. The disnarrated is a useful analytical tool for examining illness stories as it points to storytellers’ views of what is acceptable or desirable in their world and their hopes and preferences for alternative realities.
Pastoral power in HIV prevention: Converging rationalities of care in Christian and medical practices in Papua New Guinea
P. Shih, H. Worth, J. Travaglia, A. Kelly-Hanku
In his conceptualisation of pastoral power, Michel Foucault argues that modern healthcare practices derive a specific power technique from pastors of the early Christian church. As experts in a position of authority, pastors practise the care of others through implicitly guiding them towards thoughts and actions that effect self-care, and towards a predefined realm of acceptable conduct, thus having a regulatory effect. This qualitative study of healthcare workers from two Christian faith-based organisations in Papua New Guinea examines the pastoral rationalities of HIV prevention practices which draw together globally circulated modern medical knowledge and Christian teachings in sexual morality for implicit social regulation. Community-based HIV awareness education, voluntary counselling and testing services, mobile outreach, and economic empowerment programs are standardised by promoting behavioural choice and individual responsibility for health. Through pastoral rationalities of care, healthcare practices become part of the social production of negative differences, and condemn those who become ill due to perceived immorality. This emphasis assumes that all individuals are equal in their ability to make behavioural choices, and downplays social inequality and structural drivers of HIV risk that are outside individual control. Given healthcare workers’ recognition of the structural drivers of HIV, yet the lack of language and practical strategies to address these issues, political commitment is needed to enhance structural competency among HIV prevention programs and healthcare workers.
“What’s the right thing to do?” Correctional healthcare providers’ knowledge, attitudes and experiences caring for transgender inmates
Kirsty A. Clark, Jaclyn M. White Hughto, John E. Pachankis
Incarcerated transgender individuals may need to access physical and mental health services to meet their general and gender-affirming (e.g., hormones, surgery) medical needs while incarcerated.
This study sought to examine correctional healthcare providers’ knowledge of, attitudes toward, and experiences providing care to transgender inmates.
In 2016, 20 correctional healthcare providers (e.g., physicians, social workers, psychologists, mental health counselors) from New England participated in in-depth, semi-structured interviews examining their experiences caring for transgender inmates. The interview guide drew on healthcare-related interviews with recently incarcerated transgender women and key informant interviews with correctional healthcare providers and administrators. Data were analyzed using a modified grounded theory framework and thematic analysis.
Findings revealed that transgender inmates do not consistently receive adequate or gender-affirming care while incarcerated. Factors at the structural level (i.e., lack of training, restrictive healthcare policies, limited budget, and an unsupportive prison culture); interpersonal level (i.e., custody staff bias); and individual level (i.e., lack of transgender cultural and clinical competence) impede correctional healthcare providers’ ability to provide gender-affirming care to transgender patients. These factors result in negative health consequences for incarcerated transgender patients.
Results call for transgender-specific healthcare policy changes and the implementation of transgender competency trainings for both correctional healthcare providers and custody staff (e.g., officers, lieutenants, wardens).
Building addiction recovery capital through online participation in a recovery community
Ana-Maria Bliuc, David Best, Muhammad Iqbal, Katie Upton
This study examines how online participation in a community of recovery contributes to personal journeys of recovery. It investigates whether recovery capital building – as indicated by increased levels and quality of online social interactions – and markers of positive identity development predict retention in a recovery program designed around fostering community involvement for early stage recovery addicts.
It was predicted that online participation on the group’s Facebook page and positive identity development are associated to retention in the program.
To map how participants interact online, social network analysis (SNA) based on naturally occurring online data (N = 609) on the Facebook page of a recovery community was conducted. Computerised linguistic analyses evaluated sentiment of the textual data (capturing social identity markers). Linear regression analyses evaluated whether indicators of recovery capital predict program retention. To illustrate the findings in the context of the specific recovery community, presented are two case studies of key participants who moved from the periphery to the centre of the social network. By conducting in-depth interviews with these participants, personal experiences of engagement in the online community of group members who have undergone the most significant changes since joining the community are explored.
Retention in the program was determined by a) the number of comment ‘likes’ and all ‘likes’ received on the Facebook page; b) position in the social network (degree of centrality); and c) linguistic content around group identity and achievement.
Positive online interactions between members of recovery communities support the recovery process through helping participants to develop recovery capital that binds them to groups supportive of positive change.