Part I can be found here.
Yannick Jaffré, Siri Suh
Despite impressive global investment in reproductive health programs in West Africa, maternal mortality remains unacceptably high and obstetric care is often inadequate. Fertility is among the highest in the world, while contraceptive prevalence remains among the lowest. This paper explores the social and technical dimensions of this situation. We argue that effective reproductive health programs require analyzing the interfaces between technical programs and the social logics and behaviors of health professionals and client populations. Significant gaps between health programs’ goals and the behaviors of patients and health care professionals have been observed. While public health projects aim to manage reproduction, sexuality, fertility, and professional practices are regulated socially. Such projects may target technical practices, but access to care is greatly influenced by social norms and ethics. This paper shows how an empirical anthropology that investigates the social and technical interfaces of reproduction can contribute to improved global health.
Annegret F. Hannawa, Yuki Shigemoto, Todd D. Little
This study investigates the intrapersonal and interpersonal factors and processes that are associated with patient forgiveness of a provider in the aftermath of a harmful medical error.
This study aims to examine what antecedents are most predictive of patient forgiveness and non-forgiveness, and the extent to which social-cognitive factors (i.e., fault attributions, empathy, rumination) influence the forgiveness process. Furthermore, the study evaluates the role of different disclosure styles in two different forgiveness models, and measures their respective causal outcomes.
In January 2011, 318 outpatients at Wake Forest Baptist Medical Center in the United States were randomly assigned to three hypothetical error disclosure vignettes that operationalized verbally effective disclosures with different nonverbal disclosure styles (i.e., high nonverbal involvement, low nonverbal involvement, written disclosure vignette without nonverbal information). All patients responded to the same forgiveness-related self-report measures after having been exposed to one of the vignettes.
The results favored the proximity model of interpersonal forgiveness, which implies that factors more proximal in time to the act of forgiving (i.e., patient rumination and empathy for the offender) are more predictive of forgiveness and non-forgiveness than less proximal factors (e.g., relationship variables and offense-related factors such as the presence or absence of an apology). Patients’ fault attributions had no effect on their forgiveness across conditions. The results evidenced sizeable effects of physician nonverbal involvement-patients in the low nonverbal involvement condition perceived the error as more severe, experienced the physician’s apology as less sincere, were more likely to blame the physician, felt less empathy, ruminated more about the error, were less likely to forgive and more likely to avoid the physician, reported less closeness, trust, and satisfaction but higher distress, were more likely to change doctors, less compliant, and more likely to seek legal advice.
The findings of this study imply that physician nonverbal involvement during error disclosures stimulates a healing mechanism for patients and the physician-patient relationship. Physicians who disclose a medical error in a nonverbally uninvolved way, on the other hand, carry a higher malpractice risk and are less likely to promote healthy, reconciliatory outcomes.
Ann V. Bell
There is a prolific literature on medicalization. While that research highlights numerous effects of the process, it is just beginning to explore medicalization’s complexity. In an effort to understand medicalization as a diverse, contextual process, I utilize the case of infertility in the U.S., a highly stratified, medicalized condition. I interviewed 95 individuals among those at the margins of mainstream understandings of reproduction—women of low socioeconomic status, men who were part of an infertile couple, and women in same-sex relationships who were accessing medical treatment to assist in conception—and compared their experiences to 17 straight women of high socioeconomic status who are at the center of reproductive care. Through such comparison, I examine the gender, class, and sexuality dimensions of inequality in medicalization. Ultimately, medicalization excludes, but it does so differentially and with different effects depending on an individual’s social location. Such findings demonstrate that medicalization is not a fixed, universal process. It is fluid and relational and shifts depending on context.
Stephen P. Brummell, Jane Seymour, Gina Higginbottom
Despite media images to the contrary, cardiopulmonary resuscitation in emergency departments is often unsuccessful. The purpose of this ethnographic study was to explore how health care professionals working in two emergency departments in the UK, make decisions to commence, continue or stop resuscitation. Data collection involved participant observation of resuscitation attempts and in-depth interviews with nurses, medical staff and paramedics who had taken part in the attempts. Detailed case examples were constructed for comparative analysis. Findings show that emergency department staff use experience and acquired tacit knowledge to construct a typology of cardiac arrest categories that help them navigate decision making. Categorisation is based on ‘less is more’ heuristics which combine explicit and tacit knowledge to facilitate rapid decisions. Staff then work as a team to rapidly assimilate and interpret information drawn from observations of the patient’s body and from technical, biomedical monitoring data. The meaning of technical data is negotiated during staff interaction. This analysis was informed by a theory of ‘bodily’ and ‘technical’ trajectory alignment that was first developed from an ethnography of death and dying in intensive care units. The categorisation of cardiac arrest situations and trajectory alignment are the means by which staff achieve consensus decisions and determine the point at which an attempt should be withdrawn. This enables them to construct an acceptable death in highly challenging circumstances.
John Gardner, Andrew Webster
Regenerative medicine (RM) is championed as a potential source of curative treatments for a variety of illnesses, and as a generator of economic wealth and prosperity. Alongside this optimism, however, is a sense of concern that the translation of basic science into useful RM therapies will be laboriously slow due to a range of challenges relating to live tissue handling and manufacturing, regulation, reimbursement and commissioning, and clinical adoption. This paper explores the attempts of stakeholders to overcome these innovation challenges and thus facilitate the emergence of useful RM therapies. The paper uses the notion of innovation niches as an analytical frame. Innovation niches are collectively constructed socio-technical spaces in which a novel technology can be tested and further developed, with the intention of enabling wider adoption. Drawing on primary and secondary data, we explore the motivation for, and the attempted construction of, niches in three domains which are central to the adoption of innovative technologies: the regulatory, the health economic, and the clinical. We illustrate that these niches are collectively constructed via both formal and informal initiatives, and we argue that they reflect wider socio-political trends in the social management of biomedical novelty.
Helen-Maria Lekas, David Alfandre, Peter Gordon, Katherine Harwood, Michael T. Yin
The phenomenon of leaving the hospital against medical advice (AMA) despite being quite common and associated with significant deleterious health outcomes remains inadequately understood and addressed. Researchers have identified certain patient characteristics as predictors of AMA discharges, but the patients’ reasons for these events have not been comprehensively explored. Moreover, because the medical authority model dominates this research area, providers’ experiences of AMA discharges remain unstudied. We examined the AMA discharge from a patient-centered perspective by analyzing the content of notes providers generate to record such events. We analyzed providers’ notes for all inpatients with a primary HIV diagnosis (N = 33) that, in 2012, left an urban hospital AMA. Applying the Scott and Lyman accounts framework, we identified that the notes constituted records of providers’ and patients’ excuses and justifications for failing to meet the expectations of a provider offering patient-centered care and a compliant patient receiving care. Alongside the patients’ reasons for leaving AMA, the notes also revealed the providers’ reasons for honoring or discrediting the patients’ accounts. The style of the accounts and the professional status of the notes’ authors enabled us to contextualize the production and sharing of AMA notes in the hospital hierarchy. Conceptualizing AMA notes as dyadic accounts elicited specific factors that challenge the patient-provider relationship, and generated insights on how to strengthen it, and thus decrease the rates of AMA discharges and their associated health effects.
Brian K. Barber, Clea McNeely, Joseph A. Olsen, Robert F. Belli, Samuel Benjamin Doty
This study assessed the association between exposure to political violence over a 25-year period and adult functioning among a population that has experienced protracted and severe political conflict. Instead of aggregating exposure to political violence across time and type of exposure, as is commonly done, the event history calendar pioneered in this study assessed exposure to five forms of political violence annually from 1987 to 2011 in a representative sample of 1788 adults, aged 37 on average, in the occupied Palestinian territories (West Bank, East Jerusalem, and the Gaza Strip). This method allowed for the identification of trajectories of exposure to political violence from childhood to adulthood using latent profile analysis. We then correlated the trajectories of exposure to measures of economic, political, community, family, psychological, and health functioning. As expected, being shot at, having one’s home raided, being hit or kicked, being verbally abused, and witnessing someone close being humiliated were all elevated during periods of heightened political conflict (the first intifada (1987–1993) and, less so, the second intifada (2000–2005)). In addition, 12% of women and men reported high and persistent levels of exposure to humiliation (being verbally abused and/or witnessing someone close being humiliated) across the entire 25-year period. These individuals lived predominantly in neighborhoods with a high Israeli military presence. Compared to those who experienced periodic exposure to political violence, persistently humiliated men and women reported significantly lower health, economic, political, and psychological functioning, as well as higher social cohesion and political expression. Relevant literatures are reviewed when concluding that persistent humiliation is a neglected form of political violence that is best represented as a direct (versus structural), acute (versus chronic), macro (versus micro), and high-grade (versus low-grade) stressor whose particular injury is due to the violation of individual and collective identity, rights, justice and dignity.
Elmien Lesch, Arlene R. Adams
Low-income Coloured Western Cape communities in South Africa display high rates of problematic drinking, especially binge-drinking over weekends. Alcohol abuse in these communities is linked to the prevalence of intimate partner violence (IPV), fetal alcohol syndrome and sexual violence against women. Few studies, however, have investigated the social contextual factors that perpetuate alcohol abuse in these communities.
Objective and method
Our study contributes to the need for social contextual knowledge need by providing an understanding of how committed couples, who lived and worked in one low-income historic farm worker community, located in the Cape Winelands of South Africa, constructed alcohol use and abuse in their relationship. Using a social constructionist grounded theory we analysed the consecutive interviews conducted with individual partners.
Three themes shed light on our participants’ alcohol use discourses. The first theme highlights participants’ apparent lack of identification with the problem of alcohol abuse, despite the omnipresence of alcohol abuse in their accounts. The second theme draws attention to men’s and women’s explicit and implicit support of gendered norms regarding alcohol consumption. Linked to the previous, the third theme accentuate women’s toleration of men’s “quiet” weekend binge-drinking.
We point out the limitations of local alcohol policy and intervention efforts to address normative drinking discourses and practices in this research community.
Reidun Norvoll, Reidar Pedersen
In mental health care, coercion is a controversial issue that has led to much debate and research on its nature and use. Yet, few previous studies have explicitly explored the views on the concept of coercion among people with first-hand experiences of being coerced. This study includes semi-structured focus-groups and individual interviews with 24 participants who had various mental health problems and experiences with coercion. Data were collected in 2012–2013 in three regions of Norway and analysed by a thematic content analysis. Findings show that participants had wide-ranging accounts of coercion, including formal and informal coercion across health- and welfare services. They emphasised that using coercion reflects the mental health system’s tendency to rely on coercion and the lack of voluntary services and treatment methods that are more helpful. Other core characteristics of coercion were deprivation of freedom, power relations, in terms of powerlessness and ‘counter-power,’ and coercion as existential and social life events. Participants’ views are consistent with prevailing theories of coercion and research on perceived coercion. However, this study demonstrates a need for broader existential and socio-ethical perspectives on coercion that are intertwined with treatment and care systems in research and practice. Implications for mental health policy and services are discussed.
Sirry M. Alang
Discrepancies exist between how some Black populations perceive depression and how depression is conceptualized within research and clinical settings. Based on a 12-month ethnography of mental health in a predominantly Black disadvantaged urban neighborhood in Midwestern United States, the current study identifies meanings and common ways of expressing depression among African Americans. Depression was often considered a sign of weakness rather than a health problem that might need medical attention. Associated emotions like sadness and hopelessness were inconsistent with notions of strength. Common indicators of depression included classic symptoms such as hopelessness, loss of sleep, and feeling worthless. However, expressions of depression such as anger, agitation, violent behavior, and a frantic search for social interaction that are inconsistent with DSM-V criteria were also common. These findings have implications for the clinical assessment of depression and for the measurement of depression in community surveys. In addition, the context and meaning of symptoms play an important role in determining whether experiences are indicative of depression. This paper underscores that the provision of patient-centered mental health care requires a better understanding of the conceptualization of disorders within specific contexts.
Jennifer A. Reich
Despite eliminating incidences of many diseases in the United States, parents are increasingly rejecting vaccines for their children. This article examines the reasons parents offer for doing so. It argues that parents construct a dichotomy between the natural and the artificial, in which vaccines come to be seen as unnecessary, ineffective, and potentially dangerous. Using qualitative data from interviews and observations, this article shows first, how parents view their children’s bodies, particularly from experiences of birth and with infants, as naturally perfect and in need of protection. Second, parents see vaccines as an artificial intervention that enters the body unnaturally, through injection. Third, parents perceive immunity occurring from illness to be natural and superior and immunity derived from vaccines as inferior and potentially dangerous. Finally, parents highlight the ways their own natural living serves to enhance their children’s immunity rendering vaccines unnecessary. Taken together, this dichotomy allows parents to justify rejection of vaccines as a form of protecting children’s health. These findings expose perceptions of science, technology, health, and the meanings of the body in ways that can inform public health efforts.
Enrique Gracia, Juan Merlo
Nordic countries are the most gender equal countries in the world, but at the same time they have disproportionally high prevalence rates of intimate partner violence (IPV) against women. High prevalence of IPV against women, and high levels of gender equality would appear contradictory, but these apparently opposite statements appear to be true in Nordic countries, producing what could be called the ‘Nordic paradox’. Despite this paradox being one of the most puzzling issues in the field, this is a research question rarely asked, and one that remains unanswered. This paper explores a number of theoretical and methodological issues that may help to understand this paradox. Efforts to understand the Nordic paradox may provide an avenue to guide new research on IPV and to respond to this major public health problem in a more effective way.
This article critically analyses biological citizenship in terms of how it instates an ideal human subject drawn expressly from Western liberal discourse. Through an analysis of health promotion booklets directed at people living with HIV in South Africa, it reveals how regimes of biological citizenship valorise individual responsibility, agency and rationality, all attributes of the human imagined by liberal humanism. Drawing on insights from posthumanist scholarship, I argue that perceived failure to perform these attributes can operate to disqualify certain marginalised HIV-positive subjects from full citizenship. Far from immaterial, attributions of citizenship have material implications for access to human rights, including the right to life-saving treatment. Importantly, they also shape HIV/AIDS, producing two qualitatively different ontologies of disease: (i) a chronic, manageable illness for those who qualify as citizens; and (ii) a life-threatening, debilitating one for those denied full citizenship and who therefore cannot access the rights and rewards attendant on it.
This article draws on qualitative interview data exploring men’s understandings of their bodies and practices of body work in Australia in the context of increasing ‘visibility’ of men’s bodies and increasing attention to young men’s body image. For the men discussed in this article, body work practices of eating and exercise in particular relate to their embodiments of masculinity and to their broader understandings of their bodies and ‘selves’. While appearance and ‘beauty’ are typically constructed as feminine concerns and important to women’s constructions of identity, these examples show that a concern for the body’s appearance is also an important component of current embodiments of masculinity. This article provides an outline of a Deleuze-Guattarian approach to theorising the body through the concepts of affect and assemblage and suggests how this approach can assist in empirical analysis of the complex, contingent and contradictory relationship between the idealisation of health as an ‘image’ and ‘ideal’ gendered appearances in young men’s gendered and ‘health’-related body work practices. This has academic and practical implications for understanding contemporary gender arrangements related to the social and cultural circumstances in which the body is becoming ever more central.
The task of this article is to theorize on the matter of bodywork in relation to health and thereby propose a theoretical framework that can enlighten our understanding of bodywork in a ‘health society’. With the ambition of understanding bodywork in a (hyper)modern era, characterized by a strong individualism and the search for performance, the body is here conceived as a capital. The body as a site of investment can be improved, worked upon and has an impact on how the individual distinguishes him/herself in social space. Finding inspiration in the sociology of the body and the anthropologist Le Breton’s approach to the body as an ideal observatory of the social context (1985), this article will explore how a particular rationale towards the body can be observed among some gym goers in Denmark, more precisely younger men and middle-aged women. On the basis of narratives acquired through interviews, it is stressed in this article that bodywork evolves around a general will to more health. This rationale can be identified as body management where the gym goers act in order to ensure a performative health.
Ya’arit Bokek-Cohen, Limor Dina Gonen
The extant family policy in the United States relates to children who are already born. We propose that this policy should be extended in order to enhance the psychological welfare of children prior to their conception. We use the sperm banking industry as a case study, and theorize extended donor profiles as constituting socializing text for the donor offspring. Building on the identity process theory and the concept of genealogical bewilderment, we assume that many sperm recipients, especially single mothers and lesbian couples, may want to show their future children the profile of their father. Informed by Connell’s Hegemonic Masculinity theory, we content analyzed 180 extended sperm donor profiles from six American sperm banks and found that traditional masculinity prevails. Hence, we contend that there is a discrepancy between the monolithic, traditional way masculinity is performed through the text and the diverse masculinities, gender roles and family types of the donor offspring’s reality; experiencing such discrepancies may cause some stress in offspring. We propose that family policy should be expanded and elaborated to regulate the contents of extended profiles, in order to ensure a repertoire of a greater diversity of family structures as well as a variety of masculinities.
Karen J Hoare
This manuscript discusses two extant theories that are pertinent to retaining new graduate nurses in practice and applies the new theory of reciprocal role modelling to them. Transition shock was first postulated by Boychuk Duchscher, who theorised that the real life world of clinical practice was so far removed from a nurse’s educational preparation in College or University that it caused the attrition of some nurses from the profession. In addition, Chambliss described the process of routinisation into hospital life and nursing work in his book Beyond caring, which was the result of 15 years of ethnographic observation in a hospital. Some nurses never become routinised to nurses’ work. Both of these theories support the grounded theory of reciprocal role modelling, that describes how new graduate nurses are mentored by experienced practice nurses (EPNs) into general practice in New Zealand. Unexpectedly new graduate nurses become role models to the EPNs showing them how to access information and continuing professional development material using modern technology. Acknowledging transition shock and the concept of routinisation and providing an environment in health-care organisations where reciprocal role modelling can occur, may result in the retention of younger nurses in the workforce.
Since 2009, all Danish hospitals have been subjected to a comprehensive, mandatory accreditation system, the so-called Danish Quality Model (DDKM), in order to assure the quality of hospital services. So far there is no evidence of DDKM’s positive effects on clinical outcome and it may even be contributing to accountability overload. This article seeks to provide an explanation for why hospital staff seems to accept, albeit grudgingly and partially, the imposition of a new, comprehensive accountability system with questionable clinical merits. Inspired by Michel Foucault’s analytics of government, it is argued that the accreditation system is hard to refuse because it promises to increase the quality of hospital services and, more importantly, because the procedural standards espoused by DDKM work through the structured and accountable freedom of medical staff.
The year 2014 marked the 10th year anniversary of the introduction of the smoking ban in Ireland. Despite the objections to the smoking ban, controversy in the media and uncertainties among the public that characterized the aftermath of its announcement, the smoking ban came into effect on 29 March 2004 with little or no need of coercive enforcement mechanisms. The ban was mainly self-enforced by the public and compliance was from the beginning remarkably high. This article is concerned with exploring what forms of conduct were assumed and promoted to seek a successful exercise in ‘the conduct of conduct’ (Foucault, 1982). Findings from research are presented that demonstrate how policy help produce and reproduce individuals’ identification as ‘responsible’ and ‘irresponsible’ citizens. The article also contributes to debates on how neo-liberal forms of government encourage self-regulation in the context of contemporary public health interventions.
Edwin Wouters, Katinka De Wet
This article presents findings from a longitudinal qualitative study (48 in-depth interviews with 12 women on antiretroviral treatment (ART)) exploring the experience of living with HIV as a chronic illness in South Africa by applying the structural and interactionist perspectives on chronic illness. The structural perspective indicates that the illness experience needs to be contextualised within the wider framework of the women’s hard-earned lives: throughout the interviews, the women tended to refuse singularising HIV/AIDS and continuously framed the illness within the context of general hardship and adversity. Employing an interactionist perspective, the repeated interviews demonstrated the partial applicability of the concept of biographical disruption to the illness experience: most women experienced feelings of denial and disbelief upon diagnosis, but the availability of ART clearly mitigated the impact of HIV on their biographies. In addition, our findings demonstrate that the interaction between structural aspects, (stigmatising) social relations, and the illness (and its treatment) determines the never-ending cycle of identity appraisals, revisions and improvements, rendering the moral career of the HIV-positive women on ART a continuous work in progress.
Lucy C. Farrell, Megan J. Warin, Vivienne M. Moore, Jackie M. Street
Intense concern about obesity in the public imagination and in political, academic and media discourses has catalysed advocacy efforts to implement regulatory measures to reduce the occurrence of obesity in Australia and elsewhere. This article explores public attitudes towards the possible implementation of regulations to address obesity by analysing emotions within popular discourses. Drawing on reader comments attached to obesity-relevant news articles published on Australian news and current affairs websites, we examine how popular anxieties about the ‘obesity crisis’ and vitriol directed at obese individuals circulate alongside understandings of the appropriate role of government to legitimise regulatory reform to address obesity. Employing Ahmed’s theorisation of ‘affective economies’ and broader literature on emotional cultures, we argue that obesity regulations achieve popular support within affective economies oriented to neoliberal and individualist constructions of obesity. These economies preclude constructions of obesity as a structural problem in popular discourse; instead positioning anti-obesity regulations as a government-endorsed vehicle for discrimination directed at obese people. Findings implicate a new set of ethical challenges for those championing regulatory reform for obesity prevention.
This article analyses and theorises the practice of biographical storytelling of HIV-positive AIDS activists in South Africa. Combining research in illness narratives, studies of emotions in social activism and analysis of global health institutions in Africa, I explore how biographical self-narrations are deployed to facilitate access to resources and knowledge and thus acquire material and symbolic value. I illustrate my argument through the analysis of the case of an AIDS activist who became a professional biographical storyteller. Based on the analysis which I claim to represent wider dynamics in human-rights-based health activism in the Global South, I propose the concept of narrative economies by which I mean the set of exchange relationships within which biographical self-narrations circulate and produce social value for individuals and organisations.
Jason Turowetz, Douglas W. Maynard
The practice of medicine involves applying abstract diagnostic classifications to individual patients. Patients present with diverse histories and symptoms, and clinicians are tasked with fitting them into generic categories. They must also persuade patients, or family members, that the diagnosis is appropriate and elicit compliance with prescribed treatments. This can be especially challenging with psychiatric disorders such as autism, for which there are no clear biomarkers. In this paper, we explicate a discursive procedure, which we term category attribution. The procedure juxtaposes a narrative about the child with a claim about members of a clinically relevant category, in this case, either children with autism or typically/normally developing children. The attribution procedure carries the implication that the child does or does not belong to that category. We show that category attributions are organised in a recurrent interactional sequence. Further, we argue that category attributions encode normative expectations about child development, such that the child is rendered typical or atypical relative to clinical and social norms. Accordingly, such categorisation devices have a moral dimension as well as a clinical one.
Jonathan Gabe, Catherine M. Coveney, Simon J. Williams
The pharmaceuticalisation of sleep is a contentious issue. Sleep medicines get a ‘bad press’ due to their potential for dependence and other side effects, including studies reporting increased mortality risks for long-term users. Yet relatively little qualitative social science research has been conducted into how people understand and negotiate their use/non-use of sleep medicines in the context of their everyday lives. This paper draws on focus group data collected in the UK to elicit collective views on and experiences of prescription hypnotics across different social contexts. Respondents, we show, drew on a range of moral repertoires which allowed them to present themselves and their relationships with hypnotics in different ways. Six distinct repertoires about hypnotic use are identified in this regard: the ‘deserving’ patient, the ‘responsible’ user, the ‘compliant’ patient, the ‘addict’, the ‘sinful’ user and the ‘noble’ non user. These users and non-users are constructed drawing on cross-cutting themes of addiction and control, ambivalence and reflexivity. Such issues are in turn discussed in relation to recent sociological debates on the pharmaceuticalisation/de-pharmaceuticalisation of everyday life and the consumption of medicines in the UK today.
Elina Weiste, Liisa Voutilainen, Anssi Peräkylä
The relationship between a psychotherapist and a client involves a specific kind of epistemic asymmetry: in therapy sessions the talk mainly concerns the client’s experience, which is unavailable, as such, to the therapist. This epistemic asymmetry is understood in different ways within different psychotherapeutic traditions. Drawing on a corpus of 70 audio-recorded sessions of cognitive psychotherapy and psychoanalysis and using the method of conversation analysis, the interactional practices of therapists for dealing with this epistemic asymmetry are investigated. Two types of epistemic practices were found to be employed by therapists while formulating and interpreting the client’s inner experience. In the formulations, the therapists and clients co-described the client’s experience, demonstrating that the client’s inner experience was somewhat similarly available to both participants. In the interpretations, the therapists constructed an evidential foundation for the interpretation by summarising the client’s talk and using the same descriptive terms as the client. Clients held therapists accountable for this epistemic work: if they failed to engage in such work, their right to know the client’s inner experience was called into question.
Sharon Mallon, Karen Galway, Lynette Hughes, Janeet Rondón-Sulbarán, Gerard Leavey
The gender-based nature of suicide-related behaviour is largely accepted. However, studies that report exclusively on female suicides are rare. Here we demonstrate how female suicide has effectively been ‘othered’ and appears incidental in studies which compare female and male behaviour. We highlight how recent studies of suicide have tended to be dominated by male-only approaches, which increasingly link issues of masculinity with male death by suicide. Drawing on data collected from the general practitioner and coroner’s office, we then apply the sociological autopsy approach to a cohort of 78 deaths recorded as suicides in the UK between 2007 and 2009. By focusing on females in isolation from males, we demonstrate that, as in male-only suicide studies, it is similarly possible to draw out issues associated with the feminine identity, which can be linked to death by suicide. We find that bereavement, sexual violence and motherhood could all be linked to the lives and help-seeking of the females who died. In closing, we suggest that a reorientation towards sociological analytic approaches of female suicide may help to produce further reductions in the rate of female death by suicide.
Michael Mair, Christian Greiffenhagen, W.W. Sharrock
As a contribution to current debates on the ‘social life of methods’, in this article we present an ethnomethodological study of the role of understanding within statistical practice. After reviewing the empirical turn in the methods literature and the challenges to the qualitative-quantitative divide it has given rise to, we argue such case studies are relevant because they enable us to see different ways in which ‘methods’, here quantitative methods, come to have a social life – by embodying and exhibiting understanding they ‘make the social structures of everyday activities observable’ (Garfinkel, 1967: 75), thereby putting society on display. Exhibited understandings rest on distinctive lines of practical social and cultural inquiry – ethnographic ‘forays’ into the worlds of the producers and users of statistics – which are central to good statistical work but are not themselves quantitative. In highlighting these non-statistical forms of social and cultural inquiry at work in statistical practice, our case study is an addition to understandings of statistics and usefully points to ways in which studies of the social life of methods might be further developed from here.
In recent years ‘bioart’ has been lauded in the social sciences for its creative engagements with the ontological stakes of new forms of biotechnical life in-the-making. In this paper I push further to explore the ontogenetic potentials of bioart-encounters to generate new capacities for thinking and perceiving the nonhuman agencies imbricated in the becoming of subjects. To explore this potential I stage an encounter with Gilbert Simondon’s philosophy of individuation, highlighting three implications for theorizations of the constitution and transformation of subjects. First, Simondon forces us to rethink the subject in terms of its transductive emergence from pre-individual processes, and its metastable susceptibility to ongoing transformations. Second, he substitutes voluntarist conceptions of thought with an involuntarist primacy of material encounters as the conditions for novel individuations. Finally, I argue that Simondon enables a thinking of the politics of the (bio)art-encounter in terms of its ontogenetic capacity to materially produce, rather than merely represent, new subjects and worlds.
This article reconsiders Stiegler’s account of the emergence of the human species in light of research in the field of transgenerational epigenetics. Stiegler traces this emergence to the appearance of technical artefacts allowing for the intergenerational transmission of acquired memory that would otherwise die along with the organism. This is taken to constitute a rupture in the history of life. The argument that I develop critiques Stiegler’s account at two levels: On the empirical level I argue that emerging neo-Lamarckian developments in the life sciences pose a challenge to the terms in which the specificity of the human is outlined and the notion of the rupture with life that its emergence constitutes. On the logico-transcendental level, I contend that in its account of the rupture, Stiegler’s narrative repeats the logic of the ‘dual origin’ that he ascribes to Rousseau and Leroi-Gourhan in their respective accounts of the origin of the genus Anthropos.
Answering a call for a 2013 exhibition at Ars Electronica bridging art and synthetic biology, a group of artists and designers offer ‘Blueprints for the Unknown’. Their fictional scenarios offer possible futures already embedded in and ready to become our present. By imagining potential events and soon-to-be organisms and bodies, these blueprints perform the untenable relationship between predictable bioengineered living forms and the unpredictable contexts within which such life subsists over time. While synthetic biology focuses on the particularities of each micro-manipulation within a specific timeframe, art practices can speculate on the wider reverberations of modified life, making visible the vulnerable encounters and uneven exchanges across variable living forms and scales, from molecule to human, synthetic to organic. This paper explores the indeterminacies that arise as living forms become synthetically modified, reorganized and redirected at will.
Following Anna’s post on current special issues, here are abstracts from this month’s journal outputs.
At the Georgian Weightlifting Federation in Tbilisi, Georgia, a mainstay of coaching is the training cue, a shouted word or phrase that coaches use to prompt weightlifters to perform in a certain psychological, physical, or technical way. In this practice, coaches cultivate and naturalize dimensions of physiology and psychology, aligning masculinity with animality, lack of restraint, and emotional surfeit, and femininity with gracefulness, control, and good technique. Although Olympic weightlifting remains stereotypically hypermasculine, coaches compliment female weightlifters’ technique as superior to men’s and train their athletes to integrate masculine “nature” and feminine “culture” in the expression of physical strength. In doing so, coaches do not instill fully formed subjectivities but manage embodied forms, using exclamatory cues to disaggregate the athlete into action, affect, and anatomy.
Magdalena E. Stawskowski
The Semipalatinsk Nuclear Test Site in Kazakhstan was conceived as an experimental landscape where science, technology, Soviet Cold War militarism, and human biology intersected. As of 2015, thousands of people continue to live in rural communities in the immediate vicinity of this polluted landscape. Lacking good economic options, many of them claim to be “mutants” adapted to radiation, while outsiders see them as genetically tainted. In such a setting, how do post-Soviet social, political, and economic transformations operate with radioactivity to co-constitute a “mutant” subjectivity? Today, villagers think of themselves as biologically transformed but not disabled, showing that there is no uniform way of understanding the effects of radioactive pollution, including among scientists.
The walk from the university toxicology laboratory to the children’s hospital is not far; Wang Bo and I have plenty of time to stop at a sidewalk fruit vendor’s stand to purchase a watermelon, a gift we will present to the staff at the hospital. Today we will meet with Lin Ming to discuss his life as a medical student, charged with treating infants who have a variety of conditions requiring neonatal surgery. Lin and I know each other from the developmental and reproductive toxicology laboratory where I conducted the bulk of my fieldwork. There, Lin prepared and analyzed samples for studies on the potential epigenetic factors involved in the development of congenital disorders. While Lin’s work in the lab centered on test tubes and tissue samples, his professional life in the children’s hospital rotates around distressed children and their anxious family members.
Julie Soleil Archambault
Behind the tall palm-leaf fences that compartmentalize domestic space in Inhambane hide luxurious gardens. Home to bougainvillea, hibiscus, crotons, impatiens, aloes, and other succulent plants, these gardens are valued for their aesthetic qualities. “We grow plants because plants are beautiful, to embellish the yard,” I am told. Some gardens have flower beds lined with coconut shells or empty beer bottles buried neck-deep into the sandy soil. Others are bedecked with wind chimes made of old compact discs and hanging nuts and bolts that jingle in the breeze. Jack Goody (1993), who once observed that there were no flowers in Africa, would have been impressed had he made it to this sleepy town in southern Mozambique where ornamental plants are a visible feature of the urban landscape, albeit one that blends in more than it stands out. In the city center, the front lawns of government offices, schools, churches, and gas stations have all undergone some degree of landscaping, and most institutions have their resident gardeners. The private gardens I am interested in are usually also under the care of a specific individual who answers requests for cuttings and who seeks out, in everyday meanderings, new species to add to his or her collection. Indeed, plants are also inconspicuously present as moving objects that traverse the city from a workplace, the yard of a relative, or straight from the bush to one’s own yard, and, every so often, from several yards to the graveyard. Plants in Inhambane are remarkably mobile for things with roots, and they are often kept in bags, for want of flowerpots, in part to facilitate this circulation.
The Monarch trailer lies in the dirt off the side of the road, surrounded by a swarm of objects. A tube lodged in its back issues short, charcoal-black breaths. Tired and heaving.
A filthy man appears at the door. He descends the stairs, moving with agility. Flapping winter rags trail just behind. The baggy clothes are not hand-me-downs from someone else’s life; they once fit him. They slacken, twist and gather up, in sync with the movements of his spindly limbs. Tenaciously holding onto their reverie of a bigger, more robust man—a John Deere or NASCAR man—they ghost him. A figure indistinct like some underimagined protagonist in a fever dream.
An allegorical figure tenuously holding together.
Annemarie Ruijsbroek, Mariël Droomer, Wim Hardyns, Peter P. Groenewegen, Karien Stronks
This study examined how the health of Dutch residents in 2012 was influenced by changes in neighbourhood social cohesion, disorder, and unsafety feelings between 2009 and 2011. Multilevel regression analyses on repeated cross-sectional survey data included 43,635 respondents living in 2100 areas. Deteriorating social cohesion and unsafety feelings were negatively associated with general health, while improvement in social cohesion was associated with better general health of the population. When the interplay of neighbourhood features was considered, deteriorating neighbourhood safety appeared decisive for health, i.e. improving social cohesion did not mitigate the health effect of deteriorating neighbourhood safety. Our results show it is important to take concurrent interactions between neighbourhood features into account when examining their health impact.
Sarah Hanson, Cornelia Guell, Andy Jones
Walking groups can benefit health but uptake is more likely amongst those who are socially well-situated and need them least. This study worked with a new walking group in a community in England with poor health and socio-economic indicators to understand non-participation and barriers to involvement. It used a qualitative approach. Participant generated photographs captured the physical and social environments in which they walked and these were used with semi-structured interviews to inductively explore walking group participation and the wider social context of walking. We found that prior to joining there were low expectations of any health benefit and walking groups were not viewed as ‘proper’ activity. The group format and social expectations presented a barrier to joining. Having joined participants described a developing awareness of the health benefits of walking. The shared sense of achieving health goals with others sustained the group rather than socialising, per se. We suggest that walking group participation is a complex social practice. Promoting walking groups as a social activity for this group of people may well have been counter-productive.
Margaret Whitehead, Andy Pennington, Lois Orton, Shilpa Nayak, Mark Petticrew, Amanda Sowden, Martin White
We conducted the first synthesis of theories on causal associations and pathways connecting degree of control in the living environment to socio-economic inequalities in health-related outcomes. We identified the main theories about how differences in ‘control over destiny’ could lead to socio-economic inequalities in health, and conceptualised these at three distinct explanatory levels: micro/personal; meso/community; and macro/societal. These levels are interrelated but have rarely been considered together in the disparate literatures in which they are located. This synthesis of theories provides new conceptual frameworks to contribute to the design and conduct of theory-led evaluations of actions to tackle inequalities in health.
Laura Upenieks, Markus H. Schafer, James Iveniuk
This paper utilizes a layered context approach to examine how neighborhood and household conditions are associated with the objective and subjective well-being of older adults. Using two waves of data from the National Social Life, Health, and Aging Project (n=2261), we assess subjective mental health through self-reported measures of perceived stress and distress and objective physical health through C-reactive protein (CRP). Environmental disorder was measured by independent, trained interviewers. Cross-sectional results indicate that household disorder is positively associated with perceived stress and distress, overwhelming the association between neighborhood disorder and mental health outcomes. Yet longitudinal findings point to a reverse process, whereby highly stressed women experience deterioration in their home environment across the two waves. Few significant findings surfaced for CRP. Taken together, our findings illustrate the complex interplay between health and proximal environments and underscore how feedback cycles operate between “health” and “place” across multiple outcomes.
Sara Glasgow, Ted Schrecker
The growing prevalence of NCDs in low- and middle-income countries (LMICs) is now recognized as one of the major global health policy issues of the early 21st century. Current official approaches reflect ambivalence about how health policy should approach the social determinants of health identified by the WHO Commission on the topic that released its report in 2008, and in particular the role of macro-scale economic and social processes. Authoritative framing of options for NCD prevention in advance of the September, 2011 UN high-level meeting on NCDs arguably relied on a selective reading of the scientific (including social scientific) evidence, and foregrounded a limited number of risk factors defined in terms of individual behavior: tobacco use, unhealthy diet, alcohol (ab)use and physical inactivity. The effect was to reproduce at a transnational level the individualization of responsibility for health that characterizes most health promotion initiatives in high-income countries, ignoring both the limited control that many people have over their exposure to these risk factors and the contribution of macro-scale processes like trade liberalization and the marketing activities of transnational corporations to the global burden of NCDs. An alternative perspective focuses on “the inequitable distribution of power, money, and resources” described by the WHO Commission, and the ways in which policies that address those inequities can avoid unintentional incorporation of neoliberal constructions of risk and responsibility.
The rapid growth of the Chinese economy in the post-Mao era has been accompanied by a sharp increase in the prevalence of diabetes and recent studies suggest that there is now more than a 100 million diabetics in China. This article explores how biomedical diabetes treatment contributes to configure subjectivities and collectivities in contemporary China. Based on an ethnographic study of diabetics, it argues that biomedical knowledge of diabetes is subtly inflected as it is transmitted by doctors, pharmaceutical companies, and patients, and that these differentiated modes of transmission work against the emergence of a singular diabetic subjectivity and biosociality.
Despite substantial strides to improve cancer control in India, challenges to deliver oncology services persist. One major challenge is the provision and accessibility of adequate infrastructure. This paper offers ethnographic insight on the conceptual and material conditions that are currently shaping the delivery of oncology in Mumbai, focusing specifically on the way India’s socio-economic context necessitates non-biomedical acts of voluntarism or ‘seva’ (selfless service). Developing the premise that hospitals are not identical clones of a biomedical model, detailed attention is paid to the way ‘care’ emerges through ‘praxis of place’ ( Casey, 2003) within the cancer hospital as a multi-scalar ‘heterotopic’ (Street and Coleman, 2012) site. Such a perspective enables global/local tensions to come into view, together with the heterogeneous confluence of juxtaposing materialities, imaginations, social practices and values that both propels and constrains the everyday delivery of care. The paper reflects on the theoretical implications of hospital seva in Mumbai in light of social science studies of hospital ethnography and health activism and contributes important ethnographic insight into the current global health debates regarding effective implementation of cancer services in India.
Susan Reynolds Whyte
In Uganda, hypertension and diabetes have only recently been included in the health policy agenda. As they become treatable disorders, they take on more distinct contours in people’s minds. This article relates knowledge about these two conditions to health institutions and technology for diagnosing and treating them. The response to the AIDS epidemic in Uganda provides an important context for, and contrast with, the emergence of hypertension and diabetes as social phenomena. Ethnographic fieldwork shows the interplay between experience of these conditions and the political economy of treatability.
In this Call for Papers we invite risk researchers to submit articles for a special issue of Health, Risk & Society scheduled for publication in 2017. The special issue will focus on The Practice and Experience of Risk Work and will bring together articles which develop theoretical understandings of the experiences and practices of various front-line practitioners who are required to interpret and manage risk within their everyday work. The deadline for submission is 30 November 2016.
Mabel Stevenson, Brian J. Taylor, Joanne Knox
Effective and efficient search methods are required to retrieve robust evidence to inform the study of risk communication such as in dementia care. In this article, we draw on a study which appraised 12 bibliographic databases and one online search engine for this purpose by measuring their ability to identify relevant papers published up to December 2013 when applying a consistent search strategy on the topic of research on risk concepts and risk communication in dementia. We also searched reference lists of literature reviews. We retrieved 31 relevant articles. We took measures of sensitivity (ability to retrieve relevant papers) and precision (ability to avoid retrieving irrelevant papers), and we identified unique articles and the dispersion of relevant results when using database relevancy-sorting functions. We found that Cumulative Index to Nursing and Allied Health and PsycINFO had the highest levels of sensitivity; Social Services Abstracts, Social Care Online and Applied Social Sciences Index and Abstracts had the highest levels of precision. We rated Google Scholar (using the first 300 hits retrieved) third on sensitivity, seventh on precision, and found it had a more effective sort by relevancy function than any of the databases. We found that five databases and Google Scholar retrieved at least one study not identified by any other database. We found that none of the databases retrieved all of the relevant articles identified by that database within the first 25% of results when using the sort by relevancy function (where this was available). We concluded that it is necessary to use a number of databases for effective searching on this topic. The approaches we report in this article assist in creating a comprehensive search strategy and can be used by researchers to build social science risk knowledge methodically.
In high-income countries such as Finland, personal healthcare is organised around the management of lifestyle risks and minimisation of such risks forms a key part of public health policy. While the scientific development of the lifestyle risk model has been thoroughly studied, there has been less research on the history of popular experiences of the model. In this article, I examine lay people’s response to a pioneering heart disease prevention programme in north-eastern Finland in the 1970s, the North Karelia Project, which promoted the lifestyle risk model. I use archival data from early 1970s that recorded the project interactions with the local population and their reactions to the project. I show that although local residents in North Karelia responded positively to the project, they did not necessarily subscribe to its preventive and risk minimising objectives. In an area of limited health resources, the project provided local residents with access to medical expertise. Local reactions indicated a clash of a cultural notion of illness embedded in the social life-world of Karelians with a specific rationality of government emphasising individual responsibility vis-à-vis heart conditions. Local residents who were critical of the public health risk model tended to minimise the role of lifestyle risk factors in cardiovascular disease causation or subsumed these factors into a more encompassing explanation that stressed the effects of the on-going structural social change in the area, highlighting the sense of loss caused by the waning of traditional small farm existence and their anxiety about the resulting economic and social insecurity.
Kate Holland, Kerry McCallum, Alexandra Walton
Health guidelines in many countries advise women that not drinking alcohol during pregnancy is the safest option for their babies. This advice is based on a lack of evidence about what is a safe amount of alcohol and increasing concern about Foetal Alcohol Spectrum Disorders. While there is some knowledge of factors informing women’s views and practices in relation to alcohol consumption during pregnancy, there is little knowledge or understanding of the ways women interpret and respond to the abstinence public health advice in Australia and its bearing, if any, on their own practices. In this article, we examine women’s experiences of alcohol consumption during pregnancy and their views of the abstinence advice. We locate our analysis within the body of thinking that views pronouncements about risks during pregnancy as bound up with social and cultural values and ideas about what it means to be a ‘good’ or ‘bad’ mother, as much as they are about science. We draw on a study that we undertook in 2014 of 20 women, who were either pregnant, had recently had a child or who had young children, or who were planning for pregnancy, who took part in one-to-one qualitative interviews or participated in focus group discussions in Canberra, Australia. We found that the women in our study variously described receiving reassurance after drinking in early pregnancy; opting to abstain as the safest option in the face of uncertainty; and having an occasional drink if they felt like it. In response to the abstinence advice, we found that some women understood it as a responsible message, even if they had not necessarily adhered to it, while others criticised it as an example of policing pregnant women. Overall, the women in our study accepted that it was possible to drink responsibly during pregnancy and defended this view through strategies of normalising the occasional drink, emphasising a woman’s right to make her own decisions, and associating low-level consumption with low risk.
In this article I examine how a group of female university students in Ontario, Canada navigated the notion of ‘gendered risk’ that underpins the current promotion of human papillomavirus (HPV) vaccine. In 2010, I interviewed 24 female university students from across the province of Ontario focussing on their experiences of making decisions about whether or not to have the HPV vaccine. I found that each student’s vaccine decision – whether it was to forgo vaccination, to wait to make a decision or to vaccinate – involved the consideration of notions of gender, negotiation of sexual health issues and management of the uncertainty of a relatively new vaccine. These considerations created a complex situation and produced a complex decision-making context, one that required the women to reflect on the ways in which they exercised their ethical agency. As a result, the women in my sample practiced identity-based vaccine decision-making that was driven by their developing sense of self as a young woman emerging into adulthood.
Katie Striley, Kimberly Field-Springer
Discourses about health risks can have major implications for individuals and cultures. In this article, we use risk orders theory to examine nurses’ perceptions of patient safety risk in Obstetrics departments of US hospitals. According to risk orders theory, risk discourses can create social worlds that have the capacity to threaten individuals’ social bonds, identity and moral character, and the imaginative potential of entire cultures. Risk orders theory proposes three orders of risk. First-order risks are constructed from claims about tangible dangers that individuals believe result from their actions or inactions. Second-order risks are threats experienced by individuals because of communication about first-order risk, including threats to social relationships or social risks, and threats to the sense of moral character or moral risk. Third-order risks are threats to collective agency and imagination underpinning shared culture. In this article, we draw on data from a survey of obstetric nurses who attended the Association of Women’s Health, Obstetric and Neonatal Nurses conference in 2010 in Las Vegas, Nevada. We use a qualitative thematic analysis of 131 obstetrics nurses’ narrative responses on a critical incident survey to refine theoretical constructs of risk orders theory. We identified a third type of second-order risk, identity risks, or threats to the sense of self. We also identified three types of third-order risks: agency-constraining risks threaten members of a culture’s ability to act freely; agent-constraining risks threaten cultural members’ ability to define themselves freely; double-binding risks threaten their ability to make choices freely. We found that second-order and third-order risks did threaten some obstetrics nurses’ social bonds, identity as a nurse, moral character and imaginative potential.
Jo Day, Janet Heaton, Nicky Britten
In this article we examine a risk management tool that was used in a pilot programme of applied health research in the south-west of England funded by the National Institute for Health Research (NIHR). During a wider internal evaluation of the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula, we became interested in how risk was being defined and managed in the programme. Our search of the empirical literature showed that little attention had been given to risk governance within large-scale organisational change programmes in the health field. Through analysis of official documents and interviews with senior managers, we examined the nature and the value of the risk tool that was used by the programme managers. This highlighted that the programme was believed to be a ‘relatively risky’ initiative that required active management. The senior managers developed a risk tool for this purpose, which was regularly used throughout the pilot. It was perceived to have value in three main ways – providing assurance to members of the collaboration, responsiveness to the wider context and acceptability as part of routine programme implementation. Our analysis also highlighted intentional risk-taking within a complex partnership programme that sought to facilitate the translation of evidence into everyday practice. We discuss the implications of our insights for the further development of risk tools and the potential value of ‘edgework’ as a theoretical framework to inform further research of risk management in complex programmes.
Sherry Kit Wa Chan, Wendy Wan Yee Tam, Kit Wai Lee, Christy Lai Ming Hui, Wing Chung Chang, Edwin Ho Ming Lee, Eric Yu Hai Chen
Purpose: Public stigma is an important barrier to the recovery of patients with psychosis. This study aimed to explore public stigma associated with a newly adopted Chinese name for psychosis ‘si-jue-shi-tiao’ in a representative Chinese population in Hong Kong, focusing on factors contributing to public stigma. Exposure to mass media and its relationship with the stigma were explored in detail.
Methods: Random telephone survey of general population in Hong Kong was conducted. Information including basic demographics, psychosis literacy, recent news recall about psychosis and stigma, measured with the revised Link’s Perceived Discrimination-Devaluation Scale (LPDDS) were obtained. Univariate analysis of LPDDS score and demographic variables, news exposure, previous contacts with people with psychosis and knowledge about psychosis were conducted. Further hierarchical regression analysis was performed.
Results: A total of 1,016 subjects were interviewed. The sample was comparable with the whole Hong Kong population aged 18 years and above. Those of female gender, with higher educational level and better knowledge about symptoms and treatment of psychosis had higher score of LPDDS. The model significantly explained 8.3% of variance of LPDDS score (F(7, 895) = 12.606, p < .0001, p < .0001). The negative news recall had trend significance in the model.
Conclusion: The finding suggested that discrimination among the general public against people with psychosis was still common. Specific strategies will need to be established in targeting media news reporting about psychosis, knowledge disseminating and needs of specific population. Further researches should be conducted to understand the mechanisms of the stigma development in relation to these factors so that more focused and effective strategies could be developed.
Anna Hegedüs, Elena Seidel, Regine Steinauer
Background: Peer support workers (PSWs) are an emerging workforce within the Swiss mental health system. The ‘Experienced Involvement’ (EX-IN) training programmes prepare and certify individuals who have experienced mental health problems to work as PSWs.
Aims: This study examined the influence of EX-IN training on participants’ employment status and their experiences in the year after training.
Method: We employed quantitative and qualitative methods. Quantitative data were collected at baseline, immediately after completion and at 1 year post-training. Additionally, individual narrative interviews were conducted with 10 participants at 1 year post-training.
Results: At 1 year of completion, the majority of participants were in paid employment. Difficulties included unclear PSW roles. The qualitative analyses revealed the following categories: ‘Evolving from the patient role despite experiencing effects or consequences of mental illness’, ‘Feeling welcome and being confronted with conflicting expectations’, ‘Helping others while being needy at the same time’ and ‘Doing something worthwhile and the fear of failure’.
Conclusion: Clear role descriptions, well-defined expectations, team preparation, acknowledgement of vulnerabilities and institution-level support PSWs are important to safeguard both PSWs and service users by minimising the destabilisation risk. Future EX-IN training graduates can benefit from the establishment of remunerated PSW roles in psychiatric services.
Shashwath Sathyanath, Rohan Dilip Mendonsa, Anitha Maria Thattil, Varikkara Mohan Chandran, Ravichandra S Karkal
Background: Unfortunately, stigmatizing attitudes towards mentally ill are common among medical students, nurses as well as doctors. This is a major obstacle in the delivery of mental health services.
Aims: To assess the socially restrictive attitudes towards mentally ill among the medical professionals and to investigate the association between such attitudes and relevant variables.
Methods: We assessed the attitudes towards people with mental illness among the medical professionals (N = 130) in a medical university using shortened version of the 40-item Community Attitudes toward the Mentally Ill (CAMI) scale.
Results: We found that socially restrictive attitudes were endorsed by quite a number of faculty members and trainees. Significantly higher number of faculty members (22.5%) compared to the trainees (9.1%) endorsed unfavourable attitudes towards previously mentally ill man getting married. Similarly, significantly more number of faculty (22.5%) were averse to the idea of living next door to someone who has been mentally ill compared to the trainees (9.1%). However, significantly lesser number of faculty members (16.1%) compared to the trainees (30.3%) believed that previously mentally ill people should be excluded from taking public office. Personal acquaintance with a mentally ill individual was the only variable that was associated with significantly lesser socially restrictive attitudes among the medical professionals, irrespective of their age, gender and clinical exposure to people with mental illness.
Conclusion: Socially restrictive attitudes towards people with mental illness are prevalent among substantial number of medical professionals in a low-income country like India. Personal acquaintance with people who have mental illness appears to be the only significant factor that reduces medical professionals’ socially restrictive attitudes towards them.
Woorim Kim, Eun-Cheol Park, Tae-Hoon Lee, Yeong Jun Ju, Jaeyong Shin, Sang Gyu Lee
Background: In South Korea, societal perceptions on occupation are distinct, with people favouring white collar jobs. Hence both occupation type and income can have mental health effects.
Aim: To examine the relationship between occupational classification and depression, along with the combined effect of occupational classification and household income.
Methods: Data were from the Korean Welfare Panel Study (KOWEPS), 2010–2013. A total of 4,694 economically active participants at baseline were followed. Association between occupational classification and depression, measured using the Center for Epidemiological Studies Depression (CES-D) scale 11, was investigated using the linear mixed effects model.
Results: Blue collar (β: 0.3871, p = .0109) and sales and service worker groups (β: 0.3418, p = .0307) showed higher depression scores than the white collar group. Compared to the white collar high-income group, white collar low income, blue collar middle income, blue collar middle-low income, blue collar low income, sales and service middle-high income, sales and service middle-low income and sales and service low-income groups had higher depression scores.
Conclusion: Occupational classification is associated with increasing depression scores. Excluding the highest income group, blue collar and sales and service worker groups exhibit higher depression scores than their white collar counterparts, implying the importance of addressing these groups.
Marina Economou, Joanna Despina Bergiannaki, Lily Evangelia Peppou, Ismini Karayanni, George Skalkotos, Athanasios Patelakis, Kyriakos Souliotis, Costas Stefanis
Background: The financial crisis has yielded adverse effects on the population worldwide, as evidenced by elevated rates of major depression. International recommendations for offsetting the mental health impact of the recession highlight the need for effective treatment, including reduction in the stigma attached to the disorder.
Aims: This study endeavoured to explore lay attitudes to depression and psychiatric medication during a period of financial crisis and to identify their correlates. Furthermore, it investigated their link to help-seeking intentions.
Method: A random and representative sample of 621 respondents from Athens area participated in the study (Response Rate = 81.7%). The telephone interview schedule consisted of the Personal Stigma Scale, a self-constructed scale tapping attitudes to psychiatric medication and one question addressing help-seeking intentions.
Results: The preponderant stigmatising belief about depression pertains to perceiving the disorder as a sign of personal weakness. In addition, stereotypes of unpredictability and dangerousness were popular among the sample. Nonetheless, stigmatising beliefs are much stronger with regard to psychiatric medication; perceived as addictive, capable of altering one’s personality, less effective than homeopathic remedies and doing more harm than good. Help-seeking intentions were predicted by education, unemployment and attitudes to psychiatric medication solely.
Conclusion: Research on the mental health effects of the global recession should encompass studies investigating the stigma attached to mental disorders and its implications.
Akiko Kamimura, Maziar M Nourian, Nushean Assasnik, Kathy Franchek-Roa
Background: Intimate partner violence (IPV) is a significant public health threat that contributes to a wide range of mental and physical health problems for victims.
Aims: The purpose of this study was to examine IPV-related experiences and mental health outcomes among college students in Japan, Singapore, South Korea and Taiwan.
Methods: The data were obtained from the Inter-University Consortium for Political and Social Research (ICPSR), the International Dating Violence Study (IDVS) 2001–2006 (ICPSR 29583; N = 981; Japan n = 207; Singapore n = 260; South Korea n = 256; Taiwan n = 258).
Results: Co-experience of physical IPV victimization and perpetration was associated with borderline personality traits and posttraumatic stress disorder (PTSD), but not with depression. Childhood sexual abuse, gender hostility and violence socialization were significant predictors of borderline personality traits, depression and PTSD. While country and gender variations in mental health are noted, there are two specific populations that may need special attention for mental health interventions: Taiwanese women especially for borderline personality traits and PTSD, and Japanese men especially for depression.
Conclusion: IPV victimization and perpetration, childhood sexual abuse, gender hostility and violence socialization have a significant impact on the mental health of college students in Japan, Singapore, South Korea and Taiwan. Since IPV and mental health are significant public health issues, research on IPV and mental health consequences of IPV victimization and perpetration in these countries should be further expanded in order to better understand the interventions that will be effective in treating victims, perpetrators and victim/perpetrators of IPV.
Kyle Lipinski, Lucia L Liu, Paul WC Wong
Background: Currently, the number of natural disasters has increased sixfold when compared to the 1960s. The 2004 Indian Ocean Tsunami offered provided an opportunity for scientifically investigating the effectiveness of post-disaster programs across countries with diverse ethnic, religious and cultural backgrounds.
Aim: This study aimed to assess the effectiveness of psychological interventions focused on the prevention or reduction in post-traumatic stress disorder (PTSD) symptoms and/or enhancement of psychological well-being implemented after the 2004 Tsunami.
Methods: We systematically searched through MEDLINE, PsycINFO and The Published International Literature on Traumatic Stress (PILOTS) databases using the following keywords: ‘tsunami’ OR ‘Indian Ocean’, AND ‘intervention’.
Results: Our systematic review included 10 studies which adopted 10 different psychological interventions. A total of 8 of the 10 studies reported positive results in reducing PTSD symptoms and most interventions showed high levels of cultural sensitivity. No significant harmful effects of the included interventions were identified although two studies used potentially harmful interventions.
Conclusion: Evidence-based practice is a process of collaborative decision-making between the affected ones and interventionists. The practitioner assesses not only the availability of the level of evidence of the preferred interventions, but he or she also assesses his or her own expertise, the availability of resources, the surrounding context and the characteristics, values and preferences of relevant stakeholders.
Vasiliki Tzouvara, Chris Papadopoulos, Gurch Randhawa
Background: A number of primary studies have now assessed mental illness stigma within the Greek culture. A synthesis and appraisal of all available evidence is now required and will contribute to our growing understanding of the relationship between the cultural context and the formation of stigmatising attitudes.
Aim: To systematically review the prevalence of mental illness public stigma within the Greek and Greek Cypriot culture.
Method: Empirical articles with primary data pertaining to the prevalence of mental illness public stigma among Greek and/or Greek Cypriot populations were retrieved. Included studies were assessed for quality and extracted data were narratively synthesised.
Results: A total of 18 studies met the inclusion criteria. Methodological quality was highly variable; only 1 study was adequately statistically powered, 10 studies employed at least some element of probability sampling and obtained response rates of at least 70%, while 10 and 13 studies employed reliable and validated prevalence tools, respectively. Studies sampled the general population (n = 11), students (n = 4), healthcare professionals (n = 2), police officers, employers and family members (all n = 1). Stigma was consistently identified in moderate and high proportions across all of these groups, particularly in terms of social discrimination and restrictiveness, social distance and authoritarianism. However, some evidence of benevolence and positivity towards high-quality social care was also identified.
Conclusion: The review highlights the wide-scale prevalence of mental illness stigma within the Greek culture and the need for further rigorous research including culturally tailored stigma interventions.
Philosophy, Ethics, and Humanities in Medicine (open access)
Sohair R. Fahmy, Khadiga Gaafar
Although animal research ethics committees (AREC) are well established in Western countries, this field is weakly developed and its concept is poorly understood in the Middle East and North Africa region.
Our main objective was to introduce the concept and requirements of ethical approaches in dealing with experimental animal in research and teaching in Egypt.
Due to its very recent inception, Cairo University, Faculty of Science IACUC decided to operate in accordance with Guide for the Care and Use of Laboratory Animals 8th Edition 2011 (the Guide) since Egypt has not yet compiled its own guide.
Fifty protocols were reviewed in 2013–2014. Only ten protocols were reviewed in 2013, but in 2014, forty protocols were reviewed. In 2013 all protocols were approved and in 2014, number of approvals were 35, the number of deferrals were 4, and one refused protocol. Master’s theses (MSc) research protocols constituted the majority of the total reviewed protocols. This is attributed to the decision of the Board of the Faculty of Science, Cairo University in September, 2013 that the approval of the IACUC is mandatory before conducting any research involving animals or theses registration.
The first IACUC was established in the Cairo University, Faculty of Science, since 2012. The challenges encountered by the committee were diverse, such as the absence of laws that control the use of animal models in scientific research, lack of guidelines (protocols for experimental animals in research) and, mandatory ethical approval for any experimental animal research.
Giorgina Barbara Piccoli, Laura Sacchetti, Laura Verzè, Franco Cavallo, Working group of the students of the Torino Medical School
Organ trafficking is officially banned in several countries and by the main Nephrology Societies. However, this practice is widespread and is allowed or tolerated in many countries, hence, in the absence of a universal law, the caregiver may be asked for advice, placing him/her in a difficult balance between legal aspects, moral principles and ethical judgments.
In spite of the Istanbul declaration, which is a widely shared position statement against organ trafficking, the controversy on mercenary organ donation is still open and some experts argue against taking a negative stance. In the absence of clear evidence showing the clinical disadvantages of mercenary transplantation compared to chronic dialysis, self-determination of the patient (and, with several caveats, of the donor) may conflict with other ethical principles, first of all non-maleficence. The present paper was drawn up with the participation of the students, as part of the ethics course at our medical school. It discusses the situation in which the physician acts as a counselor for the patient in the way of a sort of “reverse” informed consent, in which the patient asks advice regarding a complex personal decision, and includes a peculiar application of the four principles (beneficence, non-maleficence, justice and autonomy) to the donor and recipient parties.
Sylvie Vandoolaeghe, Alessandra Blaizot, Danie Boudiguet, Valérie Bougault, Eduardo Dei, Benoît Foligne, Anne Goffard, Hélène Lefranc, Bénédicte Oxombre, Thomas Trentesaux, Bernard Vandenbunder, Isabelle Wolowczuk, Laurence Delhaes and the “ethic and research” working group
Given that advances in research continuously raise new ethical issues, a multidisciplinary working group of investigators involved in biomedical research has gathered to discuss and compare ethical viewpoints in their daily practice.
The working group has drafted a Charter for Ethics in Biomedical Research that encompasses all the steps in the research process, i.e. from the initial idea to analysis and publication of the results.
Based on key principles for ethically responsible research, the Charter may serve as a tool for performing research, discussing research issues and training researchers.
The Charter should stimulate researchers to think about their responsibility for research in a progressive, caring society.
Johanna Shapiro, Lois L. Nixon, Stephen E. Wear, David J. Doukas
Medical school curricula, although traditionally and historically dominated by science, have generally accepted, appreciated, and welcomed the inclusion of literature over the past several decades. Recent concerns about medical professional formation have led to discussions about the specific role and contribution of literature and stories. In this article, we demonstrate how professionalism and the study of literature can be brought into relationship through critical and interrogative interactions based in the literary skill of close reading. Literature in medicine can question the meaning of “professionalism” itself (as well as its virtues), thereby resisting standardization in favor of diversity method and of outcome. Literature can also actively engage learners with questions about the human condition, providing a larger context within which to consider professional identity formation. Our fundamental contention is that, within a medical education framework, literature is highly suited to assist learners in questioning conventional thinking and assumptions about various dimensions of professionalism.
The experience of uncertainties in exploring the unknown—and dealing with them—is a key characteristic of what it means to be a life science researcher, but we have only started to understand how this characteristic shapes cultures of knowledge production, particularly in times when other—more social—uncertainties enter the field. Although the lab studies tradition has explored the workings of epistemic uncertainties, the range of potent uncertainty experiences in research cultures has been broadened within the neoliberal reorganization of academic institutions. Most importantly, the stronger dependency on competitive project funding has led to increased social uncertainties. Being employed part-time and for shorter periods of time, researchers often find themselves in the precarious situation of high employment uncertainty. This article argues that the currently predominant form of organizing academic research (the project) creates a structural link between epistemic and social uncertainties. It then describes empirically different modes of coping with these uncertainties that researchers deploy and that seem to have become a variable in the governance of research cultures. To do so, it takes the academic life sciences in Austria as an example and explores them using approaches from both science and technology studies and labor studies.
Julie Guthman, Sandy Brown
In the context of the mandated phaseout of methyl bromide, California’s strawberry industry has increased its use of chloropicrin, another soil fumigant that has long been on the market. However, due to its 2010 designation as a toxic air contaminant, the US Environmental Protection Agency and California’s Department of Pesticide Regulation have developed enhanced application protocols to mitigate exposures of the chemical to bystanders, nearby residents, and farmworkers. The central feature of these mitigation technologies are enhanced buffer zones between treated fields and nearby buildings. Not only do buffer zones inherently privilege neighbors over farmworkers, but the determinations of the size of these buffer zones are also based on acceptable threshold levels and probabilities that allow significant exposures to those they are designed to protect. Moreover, these protocols require human monitors to detect sensory irritation. While the science and technology studies literature is highly useful for understanding the inextricability of science and politics in developing protective measures and is attentive to what counts as data in setting acceptable thresholds, it tends to overlook that social sorting is intrinsic to such regulation. We thus turn to Foucault’s biopolitics to make sense of regulations that are designed to protect but inherently allow some to become ill. Doing so illuminates how determinations of the bright line are at once technical–political as well as implicit decisions about whose bodies count.
Ludwik Fleck is known mainly for his pioneering studies of science as a social activity. This text investigates a different aspect of Fleck’s epistemological thought—his engagement with normative aspects of medicine and public health and their political underpinnings. In his sinuous professional trajectory, Fleck navigated between two distinct thought styles: fundamental microbiological research and practice-oriented investigations of infectious diseases. Fleck’s awareness of tensions between these two approaches favored the genesis of his theoretical reflections. At the same time, his close observation of medical and epidemiological practices led him to the conclusion that collectively produced scientific facts are situated and fragile. Thought collectives, Fleck explained, can err or yield to external pressures, with potentially disastrous consequences. While Fleck the reflexive experimental scientist has been creatively translated into the science studies idiom, Fleck the reflexive practical microbiologist and public health expert still awaits inspired translation.
Ludwik Fleck’s article, “On medical experiments on human beings” was published in 1948 in the main Polish medical journal; it was destined for general practitioners. Fleck was prisoner in the concentration camp Buchenwald, where he witnessed Nazi murderous “experiments” on the camp’s imamates; he testified about these experiments in the Nuremberg Trial of Nazi doctors. This article, and Tadeusz Kielanowski’s comment on Fleck text, stress, however, that an exclusive focus on the – hopefully rare – criminal activities of doctors may be misleading. It is important to prevent the numerous ethical transgressions of ‘normal’ medical science and routine clinical practice.
On November 28, 2009, as part of events marking the twenty-fifth anniversary of the disaster at the Union Carbide plant in Bhopal, gas survivors protested the contents of the report prepared by government scientists that mocked their complaints about contamination. The survivors shifted from the scientific document to a mediated lunch invitation performance, purporting to serve the same chemicals as food that the report had categorized as having no toxic effects. I argue that the lunch spread, consisting of soil and water from the pesticide plant, explicitly front-staged and highlighted the survivor’s forced intimate relationship with such chemicals, in order to reshape public perception of risks from toxins. Chemical matter like sevin tar and naphthol tar bound politicians, scientists, corporations, affected communities, and activists together, as these stakeholders debated the potential effects of toxic substances. This gave rise to an issue-based “chemical public.” Borrowing from such theoretical concepts as “ontologically heterogeneous publics” and “agential realism,” I track the existing and emerging publics related to the disaster and the campaigns led by the International Campaign for Justice in Bhopal advocacy group.
Continued in Part II.
Technologies of Care: Administering Donated Breast Milk in a South African Neonatal Intensive Care Unit by Miriam Waltz
This is the third installment of the series from the University of Cape Town’s First Thousand Day Research Group. My research traces out the pathways of donated milk from donor to recipient in a state neonatal unit in South Africa (Waltz 2015), to show how care and technologies are interwoven in complex and sometimes surprising ways.
Breastfeeding is widely seen as the best infant feeding option for mother and baby. The dominant discourse in both the public and the medical realm presents breastfeeding as a natural behaviour, best for babies, best for mums. In a recent series, The Lancet claims that increasing breastfeeding worldwide could prevent over 800,000 child deaths every year (Victora et al. 2016). This position is reflected in state policy and official declarations of the World Health Organisation (WHO) and UNICEF. In South Africa, after a decade of promoting the use of formula milk to offset possible vertical (mother to child) HIV transmission, the state re-committed to facilitating breastfeeding in the Tshwane declaration of August 2011 (see also Doherty et al. 2010 for the revised WHO guidelines on breastfeeding). Breast milk is even more important in the case of premature or low birth weight babies, who are highly susceptible to necrotising enterocolitis, (a serious gastrointestinal condition) if fed on formula milk (Neu and Walker 2011). Here, breast milk is critical in securing life; ‘breast is best’ (Murphy 1999). Where the birth mother’s breast milk is not available, donated breast milk is the best alternative.
My research on the milk’s trajectories was wide-ranging. I interviewed donor mothers; members of milk banks associated with the collection, testing, packaging and distribution of donated milk; hospital staff responsible for its prescription and distribution; and mothers whose infants were receiving donated milk. I examined public documentation and social media representations of milk donation; explored national policy and its gaps; and considered issues relating to the import and distribution of bodily fluids. For this discussion, I concentrate on the intersections of technologies and care in the hospital.
Let me begin with a small example:
One Tuesday in April 2015 I watched as a five-week old baby was fed donor milk via a tube from his nose into his stomach. The tube was connected to a machine that slowly pushed donated breast milk from a syringe. The “feed change”, in which the empty syringe was replaced with a new one, took less than a minute and the baby seemed not to notice any possible interruption in his supply. The nurse who did the changing called over another nurse to sign off on the change; the dispensation of each syringe of donor milk required two signatures on information about the amount, donor number, date and time. The first nurse told the second, “I’ve done all the milks” and they left the infant, still intubated and ‘eating’. I checked the baby’s file, and saw his father had been contacted by the hospital a week before to see whether the infant’s mother could come to donate milk. The father had apparently said the mother would visit more often but she had not come at all in the intervening period.
Donated human milk has two values. As human milk, it is nutrient-rich. As donated milk, it is scarce. In South Africa, demand outstrips supply, so that careful and often difficult decisions must be made about who may receive milk. This vignette opens several important aspects of the process through which ‘deserving’ neonates receive milk. First, it is a highly regulated, carefully documented and properly traceable process, in which milk, donated mainly by off-premises, well-off women, is prescribed to neonates in a state hospital. While the breastfeeding relationship between mother and baby is often idealised as close, intimate, and private, the contrast between a mother breastfeeding and a nurse changing a syringe in a machine next to an incubator is remarkable. For breastfeeding mothers, the quantity of milk ingested often remains a mystery (see Avishai 2007; Lupton 2000; Schmied and Lupton 2001; Waltz 2013). By contrast, in the high-tech environment of a neonatal ICU (NICU), feeding is characterised by precise measurement, a calibrated, machine-driven intervention in which premature babies who were often unable to suck and feed were literally kept alive by the tubes and machines dispensing milk to them. That donor milk was considered beneficial even in such an abstracted form is indicative of its extraordinary life-giving properties (Bai et al. 2009; Hinde and German 2012; Victora et al. 2016).
In the NICU, technologies and care sometimes seem mutually exclusive, like when breastfeeding is replaced by a feeding machine. Yet the donor milk draws in new constellations of care in which technologies feature in various ways. The administration of donor milk is routine and mechanic, yet an element of care is transposed. Different registers of care are employed in NICUs: there is care as technology – routine and medicalised in the form of prescription – but forms of domestic care feature as well. This opens up questions of care: care for whom? What gets overridden in care?
Medical professionals moved in and out of relations or terms with regard to the babies in the neonatal unit. While their relationships with neonates were ostensibly formal, objective and distanced, as demanded by medical protocols, I saw also a more personal engagement between practitioners and neonates. This was primarily reflected in how people described the babies; many doctors and nurses routinely referred to their infant patients as ‘my babies’. Despite their shows of affection for neonates, and their concern, there were nevertheless limits to what hospital staff could do. For example, on my first day in the neonatal unit I noticed that a baby had not stopped crying since being fed from a cup. One of the nursing sisters on duty heard the calls and thought he was still hungry, but knew that he would have to wait two hours until his next feed, because she could not overrule the prescribed routine of feeds and quantities; that is, feeding could not be particularised to this baby’s needs at this time. The need to carefully balance feeds for premature at-risk babies makes routines critical. As I have argued, in effect prescription stabilised a particular form of care – biomedical care rather than affective care – despite the obvious concern that staff showed for the infants in their care. Thus, while prescription offered an intervention and had a positive event horizon, it at the same time posed a limit to care.
Sometimes these decisions are based on the needs of the infant. At other times, infant needs have to be weighed up in relation to those of others in a context of scarcity. I witnessed staff making a decision to discontinue donor milk provision for one neonate. The infant’s mother was still resident in the hospital’s labour ward after a difficult labour, but she was too sick or exhausted to breastfeed. Nevertheless, other babies were present in the ward whose needs had to be met. One of the medical staff, Sister Williams, found herself in a difficult position because there was no milk from the mother, but without a prescription she also could not give either formula or donor milk. She asked one of the doctors what she should do and was told that the doctors had talked to the mother, who had requested that the hospital give formula, but the doctors told her, ‘that’s not good for the baby’. The nurse felt trapped between the doctor’s prescriptions and the patient’s wishes. The mother had not expressed breast milk and the baby needed feeding. A doctor told Sister Williams that the mother had to express and the nurse conceded, and went to help the woman hand-express milk for the infant, a task she undertook three or four times a day for the whole weekend.
Medical practitioners’ care and affect were not accounted for in the protocols that are observed in the neonatal unit, but they were crucial for its everyday functioning. Expressed through a language of appropriation, medical practitioners cared for patients in ways that blurred what should be expected of them. Often this was necessary to resolve tensions between the protocol and patients’ ability or wish to comply – informed compliance (Schwennesen et al. 2010) became a process of aligning patients’ behaviours with medical practitioners’ ideas of ‘what’s best’ grounded in scientific recommendations and a model of scarcity pertaining to breast milk. Economic calculations around production of milk and ‘effort’ put into it were implicated in who ‘deserved’ donor milk and who did not. For some women working in the neonatal unit in different capacities, caring for patients and their understanding of care was tied to notions of motherhood, and ideas around a model of what constitutes a ‘good mother’ found their way into the decision-making process around donor milk prescription.
Medicine tries to stay objective, stabilising objects as objects, and stabilising care as an object that is taught and follows a routine. Babies are not named or fed on demand, but are numbered and fed by prescription (Waltz 2015). The practical dimensions of ‘care’, – changing nappies, rearranging babies, making sure they are comfortable, changing their bedding, falls under the rubric of ‘observations’, drawing everyday domestic practices into medicalised language. Yet, many of these everyday clinical practices nonetheless had a semblance of domesticity and intimacy. As both doctors and nurses explained, in spite of the limits of the hospital context, it was ‘as a mother’ that they cared.
[All names are pseudonyms.]
Miriam Waltz works as a research assistant at the Sustainable Livelihoods Foundation in Cape Town, South Africa. She completed her Masters degree in Social Anthropology at the University of Cape Town in December 2015. This work draws on her thesis, titled ‘Milk, Meaning and Morality: Tracing Donated Breast Milk from Donor to Baby and in between.’
Avishai, O. 2007. Managing The Lactating Body: The Breast-Feeding Project and Privileged Motherhood. Qualia Sociologica. 30: 135-152.
Bai, Y.K. et al. 2009. Psychosocial factors underlying the mother’s decision to continue exclusive breastfeeding for 6 months: an elicitation study. Journal of Human Nutrition and Dietetics, 22(2), pp.134–140.
Blum, L. 1999. At the Breast: ideologies of breastfeeding and motherhood in the contemporary United States. Beacon: Boston.
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Schwennesen, N., Svendsen, M.N. and Koch, L., 2010. Beyond informed choice: prenatal risk assessment, decision-making and trust. Clinical Ethics, 5(4), pp.207–216.
Victora, C., Bahl, R., Barros, A., França, G., Horton, S., Krasevec, J., Murch, S., Jeeva Sankar, M., Walker, N. and Rollins, N. 2016. Breastfeeding in the 21st Century: Epidemiology, mechanisms, and lifelong effect. The Lancet. 387(10017): 475-490.
Waltz, M. 2013. ‘Making a Person’: Experiences of Breastfeeding among Middle class women in Cape Town, South Africa. Unpublished Honours Thesis. University of Cape Town: Cape Town.
Waltz, M. 2015. Milk, Meaning and Morality: Tracing Donated Breast Milk from Donor to Baby and in between. Unpublished Masters Thesis. University of Cape Town: Cape Town.
WHO 2011. Guidelines on HIV and infant feeding for child survival in South Africa. Bulletin World Health Organisation 2011 89: 62-67.
In the early years of the 21st century, Ian Hacking wrote a series of essays on the theme of autistic subjectivity. These eclectic, occasional essays were, he later told Andrew Lakoff, a final phase of his decades-long “making up people” project. As with other phases of this research, which dated back to the 1980s, and which included works on multiple personality disorder, fugue states, dissociation, sexual orientation, and race, Hacking’s interest in autism aimed at exploring the “ways in which classifications affect people” and how, in turn, “people…affect the ways they are classified” (2007). Hacking has labeled this process the “looping effect of human kinds” an analytic which emphasizes the dynamic, circular social causality that it seeks to name.
In his autism essays, Hacking surveyed a diverse range of texts, from autistic autobiographies, to fictional narratives about autism, like the bestselling The Curious Incident of the Dog in the Night-Time (2003), to blog and chat room postings, to hyperbolic scientific journalism. Through these essays, Hacking attempted to understand autism not only (or even especially) as a clinical, or diagnostic classification, but in a “deliberately ill-informed way,” to appreciate how such texts are creating a “public understanding of autism” (2009, 1468). For Hacking, autistic autobiographies in particular constitute a new, “multimedia” genre and “are not just stories or histories, describing a given reality. They are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism” (2009, 1467).
The autistic memoir presents an exemplary space to observe how autism itself is transforming (subjectively and diagnostically) through the “looping effect” he has adumbrated throughout his oeuvre. Or, to use Hacking’s own favored terminology, autistic autobiographies allow us to track this ever more expansively spectral “moving target,” one that, as the historian of science Steven Shapin recently argued “has been stretched to the breaking point, and…now sits astride a social fault line between what’s considered normal and what’s pathological, what’s an eccentricity and what’s in need of expert therapy.” Autistic memoirs, Hacking prophetically intimated in a 2009 article, might even portend a rupture between researchers and clinicians who have sought to anchor autism as a diagnostic instrument and those who have come to live under its protean sign.
Focusing on four autistic autobiographers, Temple Grandin, Tito Mukhopadhyay, Donna Williams, and Daniel Tammet, Hacking’s essay on autistic autobiographies questions why these texts have been promoted (through introductions, blurbs, and reviews by clinicians such as Bernard Rimland and Oliver Sacks) as offering an “inside” view of autism and whether such “access” truly characterizes what the narratives themselves offer. Rather than going “inside,” Hacking suggests that these narratives are creating an evolving discursive space for the figure of the autistic subject, one that moves away from earlier clichés of insulated, self-absorbed eccentricity. Hacking mentions that while these autobiographies focus on social impairments and “eccentric” behaviors, each author also gives expression to a hypersensitive experience of the sensory world. Offhandedly, Hacking also notes an abyss between the world of autism as confidently asserted by Uta Firth and her students (including Simon Baron-Cohen, Tony Attwood, and Francesca Happé), for whom autism is a “social impairment,” or as Baron-Cohen has often suggested, via recourse to questionably mixed electronic metaphors, faulty wiring in the “empathy circuit,” and what autistic people themselves have said.
Anlor Davin’s Being Seen: A Memoir of an Autistic Mother, Immigrant, and Zen Student (2016), offers a new and marvelously rich addition to the genre of autism autobiographies. Elegantly rendered in crisp and often poetic, even lush prose, Davin’s text threatens to demolish, once and for all, the myth that the “autistic mind” is incapable of metaphor, humor, or psychological insight. Discussing sexuality, spirituality, immigration, extreme poverty, and parenthood, Davin’s text renders vivid many aspects of the experiences that have yet to be included in the growing corpus of the autistic autobiographies. Though Olga Bogdashina’s recent Autism and Spirituality: Psyche, Self and Spirit in People on the Autism Spectrum (2013) forcefully argued against the popular (and often clinical) belief that autistic people (in their putative literalness) could not have spiritual lives, Davin’s book gives a minute account of spiritual life and its relationship to autistic perception. It also emphasizes the centrality of hypersensitivity to her condition, something which recent research in neuroscience is beginning to address more systematically.
Pioneering work by Henry and Kamila Markram, recent studies by Mayada Elsabbagh of McGill’s Psychiatry Department, as well as the recent work of MIT cognitive scientist Guoping Feng, have all questioned whether autism spectrum disorders should be considered primarily “social” disabilities in the first place. Following on the work of the Markrams, and their notion of an”intense world syndrome,” as well as Bogdashina’s seminal Sensory Perceptual Issues in Autism and Asperger’s Syndrome (2003), basic science researchers like Elsabbagh and Feng have begun to suggest that autism spectrum disorders might originate in sensory processing issues and that “social” impairments might be consequent to these issues not causal of them. Such a turn within neuroscience portends a move away from “theory of mind” (and notions like Baron-Cohen’s deeply troubling “broken empathy circuit”). And yet as Hacking suggested nearly a decade ago, autistic autobiographers have long been emphasizing the centrality of sensory perception to their “condition.” So it is hardly such neuroscientists, however novel their approaches, who can claim credit for such “discoveries.”
Davin’s beautiful new work offers a rich account of this sensitivity and its relation to her newfound identity as an autistic adulthood. The following interview explores many aspects of her book and discusses another oft-ignored aspect of autistic experience, namely economic precarity. This conversation took place near Davin’s home in Fairfax, California in April of 2016.
David: Can you tell me a little bit about the writing of this book? What was the process like for you? What originally motivated you to write this book?
Anlor: Well, I started to write the book seven years ago and when I started I was not yet formally diagnosed. I was really in bad shape to be honest. So I started by verbally, well, I mean handwriting it. Because I could not go out in public at all at the time, since I would get so overwhelmed. So the only thing I could do at the time was go far, as far as possible in the hills by myself. I went slowly and far in the hills around where I lived. So I started romantically to write some stuff up there that way.
David: And did you know you wanted to write a memoir or autobiography at that time?
Anlor: Did I know that what would come out of it would be a memoir? I did, I think. You know, I did. Yeah. I guess that was always was my intent. I mean, I did not know what shape it would take, but, yeah. Because I was always wanting to explain to people what was happening with me, but I could not explain at all, because, at that time, I was not formally diagnosed. It was like ‘this woman is a little crazy there’ but what’s going on? So I was already thinking of explaining even then, because I’m not crazy, I knew I wasn’t crazy.
David: But were you yourself already starting to identify yourself as autistic, even before the diagnosis?
Anlor: That is true, that is true because actually you are right. Because I was formally diagnosed six years ago and two years before I started to, yes, to put it together, and think in terms of autism, even before the diagnosis.
David: Can you talk a little bit about the diagnosis process? It really only comes in at the end of your book.
Anlor: Well, it’s a long story how it happened. But much further back I had this Zen practice, that I started 15 years ago and that really, really helped my mind to clarify. Slowly. With Zen, it’s like bringing things back on track, bit by bit, and at one point, that one year where I was able to work full time I had health insurance for the first time, I had some resources. And really my Zen practice, meditation, at some point made it clear to me that it was impossible that I was the only person who was uncomfortable and struggling in this way. With meditation, it became impossible to me that there was no illness with me. That it did not exist, which is what I was told every time I talked to someone before that. You know, “you’re fine” and all that stuff. So I went to see one doctor, who did not figure it out, who gave me plenty of tests and who was like totally impressed by my low blood pressure, or whatever, “really good job” and all that, he told me. So at the time too I was in San Francisco when this happened. And the noise was overwhelming, everything was overwhelming, the smells too. So I was trying, beginning to move as much as possible from the noise because of these sensory issues. I still had to earn money and I still had my son, so I could not move that far from something I could get to for work, but I went basically as far as possible, like the last stop before the bus stops in Marin. You know, the bus terminal. I moved to the country because the noise was too much…
David: We’ve talked a bit about Temple Grandin in the past. Had you read her memoir, Emergence, or others like John Elder Robison’s Look Me in the Eye?
Anlor: Well what happened was once I went to welfare, there was another person who did not believe me either. But when they saw me faint eventually, they, how do you say, “smelled a rat”? and decided to stay with me and look into things more deeply. And so they stayed with me, and took me to the traditional medical clinic. One time at the traditional medical clinic I saw another person, who wanted to pass me off, but my suspicion is that because my case worker was there with me, she listened to my pressured speech and my “crazy” behavior and all of that and heard me repeatedly talk about sensory problems, you see, and that, at that point really told her, maybe you should check into this autism spectrum and into Asperger’s. And that was it, my case worker left like two weeks later and I never heard from her again, I can’t even remember her name, but I started to read everything I could put my hands on. So I went to the public library in Fairfax and I found Temple Grandin, William Stillman, Liane Willey, Pretending to Be Normal, Thinking in Pictures, and Roy Grinker’s Unstrange Minds. What seems to me what happens is an autistic person is they go through finding out, like me, like others, finding out what’s going on, becoming sort of obsessed with it, then moving on to your path. My path is autism and Zen. So I’m not really ready to get away from it yet, autism that is. I want to bring my Zen practice to autism. That’s like my dream.
David: Why do you organize the book through Generalized Adaptation Syndrome (GAS)? Especially since it is a book about autism? Each section begins with a stage of GAS rather than, for instance, an element of a particular definition of autism.
Anlor: Honestly, that came at the last moment. I read about this GAS, and I thought this is totally me. So this was totally at the last part of writing the book. I happened to organize my life through the phases of a stress process. I just totally related to it. So much so that I decided I would put this in my book, to frame it.
David: How do these dueling diagnoses help make sense of your experience?
Anlor: The first part of my life was stage 1 of stress, where there is cortisol manufactured. And then the second part is the part where that stress is still there, but it is latent. Then the third part is it comes back big time to hurt. It’s like the three acts too.
David: In the early part of your book you talk a lot about the distinction between anxiety and nervousness. And you talk about this in relation to Temple Grandin, who has said that autistic people live with constant anxiety. You say that might be true to some extent, but that you think a better way of describing that experience is through the language of nervousness.
Anlor: Well, I read this book where I learned more about the nervous system, about it being a primal reptilian brain. I mean, I’m not a neuroscientist, but nervousness is a very primal, basic thing. And I feel like anxiety is this thing you either have or don’t. People say you can change anxiety, like it’s a symptom. But if you are nervous, the nervous system doesn’t really change. If that is a primal thing, your nervous system is you, and you’re nervous! That’s what I meant to say. Does that make sense?
David: Almost like nervousness is a way of being in the world, whereas anxiety, as a pathological state, is something to be treated or remedied?
Anlor: Yes, anxiety is something added, that one can…work on, maybe. Nervousness is not something that you really overcome. I mean that’s one of the first things I got when I went to Green Gulch [Zen retreat center outside SF]. The first few weeks there, when I was mediating all the time, that’s what I learned.
David: I’m really interested in this distinction, because of the way nervousness avoids the pathological connotations of anxiety.
Anlor: I mean I don’t really even know what pathology is to be honest. I mean, it’s the same word in French, pathologique. Forgive me, I don’t know what it really is. I’m sorry I don’t feel like this nervousness is something to take care of or get rid of, I don’t feel like it is an illness. It’s not anxiety.
David: We’ve talked a bit about your sensory issues and your Zen practice. Both are major themes of your book. In fact, the sensory issues are in a way much more prominent than “social” issues or difficulties, which are far more prominent in many of the autistic memoirs out there.
Anlor: My path is autism and Zen. So I’m not really ready to get away from it. I want to bring my Zen practice to autism. That’s like my dream, but that doesn’t mean I will stop being autistic through Zen at some point.
David: What would bringing your Zen practice to autism look like then?
Anlor: Once a year my partner, who is also on the spectrum, and I organize a meditation retreat, Autsit. My partner is big into computers, so everything goes on there. So we have a site called Autsit.net. It’s beautiful thing, it’s a beautiful location. It’s really special. And everyone who comes to sit is on the spectrum. But sensory stuff…
David: This is speculative on my part, but I question what a social deficit really is. It doesn’t exactly resonate with my fieldwork that autistic people are fundamentally asocial. Though the sensory stuff is pretty consistent.
Anlor: Well that’s exactly what I was trying to tell you. But that’s what Temple Grandin also says. She has much better wording than me, but she thinks that a lot of the behaviors of autism might be the result of sensory issues and that’s how I feel. Maybe it’s not the entire story, of course…
David: But it seems like it’s a much more significant part of the story than the standard definition of autism. If you open up any kind of Introduction to Autism or Wikipedia or even the DSM, the definition of autism always begins with the so-called triad of autistic impairments, the first of which is “deficits in social functioning,” followed by communicative difficulties and perseveration. But the sensory piece is at the margins, it doesn’t fit the definition. Yet, that’s pretty much the first thing anybody on the spectrum will tell you about. And the idea that autistic people fundamentally lack empathy, well that’s just…
Anlor: Well no, not at all, that’s not right. I’m sorry to say, but do I look crazy to you? Do I look non-empathic? Or whatever the whole autistic stereotype is. But see, this is why, so many people who actually are autistic can’t imagine they are. Because of all these stereotypes. They are in the way. Can you imagine? All these stereotypes? If I am empathetic I can’t be autistic, but…
David: In popular culture and in the work of researchers like Simon Baron-Cohen or Tony Attwood, there is a very fixed picture of what autism looks like; the robotic, emotionally vacant person. There are clearly social issues with autism, but is it really possible to be missing an “empathy circuit” whatever that could possibly mean?
Anlor: I don’t understand that all either. I’m so happy that you realize that sensory issues are a lot of it. It’s a lot of the story. I mean the whole world is based on sensory stuff. And then, with autism, it’s like you don’t have proper filters. So everything comes in. It’s like one metaphor, what can we do but metaphors to try to talk about things, forgive me, but to me autism is like a door that is broken. It started in Zen practice for me, then I realized the door is broken, the hinge to the door is broken, so all the stuff, the sensory stuff comes in. So the stuff that comes in can make me pretty ill. Imagine it’s like bad weather coming in all the time?
David: So is the detail of your sensory experience, this broken door, the overall theme of your book?
Anlor: Well there’s the Zen practice, because that is really what informs a lot of my book. So, that pervades the whole book, so that is really a huge big difference between this book and some others that are out. Some people, and I got into that rut myself, the life story is about blame. Blame the other. By now, I’m like, this is the hand that was dealt to me and I have to make the best of it. That blaming business. It’s other people’s fault and it’s true that the way other people interact with you will bring you to interact the way you do, but deep down it’s us, it’s me. So the book is about sensory stuff, but it’s also about dealing with difficult stuff without making it about blame.
David: On that note, I was struck reading your book by how generous you are with your mother, how sympathetic you are to her. You give your readers enough of a sense of her, that she wasn’t necessarily the most compassionate or understanding caregiver, given your sensitivities. She didn’t have a lot of patience. You only allude to it, but you give us a sense that she was saying mean, critical, maybe even abusive things to you on a regular basis – calling you a drama queen and all that.
Anlor: I’m so happy to hear you say that, because I didn’t want it to be about blame. Especially with her, but yes, it was not the easiest relationship for either of us.
David: There are quite a few memoirs, not only autistic ones, where there is a kind of foil, whether it is society for not being able to accept autistic quirks, or however you want to phrase it, or parents who are unable to understand their children…but your book touches on that pain without recourse to…
Anlor: Well, again, that was my whole point in the book! It was a major thing for me. I did not want to blame too much?
David: So what’s the balance between expressing pain, your pain, and not blocking that, but not focusing on fault? Your book really navigates that beautifully.
Anlor: Well, now, yes. But you know, parents and autistic children. That’s a really, really tough one. And a different story.
David: Within the “autism community,” and I’m really using scare quotations here with emphasis, there has been a lot of conflict between the so-called parent “side” and “self-advocates”.
Anlor: A lot of parents of children see us adults and they don’t know how we can be autistic, they don’t think we are autistic. Listen, I’ve learned more and more, David, that I should trust people who are looking or acting somewhat autistic, trust that they are autistic, not be suspicious. It’s just like me. I do look – at times I might look more ‘put together.’ But it’s trusting that there are different ways of being ‘put together.’ I’m constantly floored by how people who look “off their rockers” are actually not crazy at all. They do things differently. They do great things differently.
David: One of the things your book discusses at length is the economic precariousness of being an autistic adult. Can you talk a little bit about this and how it comes up in Being Seen?
Anlor: I think that probably 95% of the autistic population is broke. I mean, really broke. Maybe there are a few that make it. Would you say I made it? It looks to many people like I did, but it is not true at all. Economically, it is terrible, my situation. When you meet an autistic person, remember that their financial situation is likely to be terrible. Because this is really a big thing…you can’t do anything when you don’t have the money to do it. You can’t get proper healthcare, you can’t get proper housing, you can’t get those basic survival things, and I feel like I really have a lot to say kind of about this because when you look at my job history in my life, which I really detail at length in Being Seen, it is extremely spotty and erratic. Not that I was ever fired but I never had any job that lasted maximum more than about a year and half before problems came up.
David: Although you talk about that Jenny Craig job that…
Anlor: Oh yes. But that was not for more than a year and a half either. And it is not like I get really fired, mostly I get fed up for some reason. I think I get too much sensory overload and I have to leave. I always end up leaving. I quit like this, and I think that many autistic people quit like this, because there is too much sensory stuff and we can’t handle it. I mean we feel so bad about other things than what people know about, we feel bad probably about sensory things or we are so vulnerable we take thing so personally, that broken door that I was telling to you about, and it seems to me when I look at my job history that either they found reasons to, not fire me but get rid of me when I was a teacher, you know after a year, or it is me that left, that could not take it anymore. The way I felt too many rules, too many impositions…but anyway financially that means it is terrible. I mean a big part of it I can tell you David was that a big part of getting better was getting better financially, really huge, I should never forget to say this, this is huge, this is number one. Meaning that when I was….actually before I was even formally diagnosed, thanks to the Welfare department at Calbranch, they helped me to get SS and then getting disability. Without disability, I couldn’t live. SSI.
David: SSI, not very much money is it?
Anlor: No, it is not. Now I have both SSD and SSI, so that’s like $900 total per month. I can survive with that.
David: So how do you experience living in a place like Marin and the SF Bay where there is such wealth and where people are so glibly saying, oh, you know, the tech industry, everyone is autistic in the tech industry. Silicon Valley is the city that autism built, and all that “happy aspie” business. When people make these kind of very glib associations with that industry…
Anlor: What can you say? I listen to them with a little bit if a “yeah,” how many autistic people do you know? I mean, really. It’s not billionaires, it’s…
David: Yeah, well it seems like you and most of the autistic people I know are living in…
Anlor: Poverty. You can say it. They’re below the line.
David: You are living below the poverty line. So what about this tech and SF and autism stuff that flies around?
Anlor: I don’t think SF is especially autistic.
David: No, no, no I am not saying it is. But people make these sort of cliché comments. Do you know what I am saying?
Anlor: Of course, I see what you are saying. Especially the Silicon Valley part. I am not saying I agree with any of this. But what can you do really?
David: There is not an awareness of how much autism and poverty are intertwined. And this is another aspect of your book that is so important, you talk about the precariousness of your economic situation.
Anlor: And you know nowadays when I meet autistic adults, even if they don’t tell, they are always in a precarious economic situation, even if they don’t tell. And later I always find out that this is true, always terrible economically. Never assume that an autistic person has the money to even pay bus fare or for a cup of coffee or something like that.
David: Thanks so much for taking the time to talk about your wonderful new book.
Anlor: Hey, it’s my pleasure.
David Platzer is a PhD candidate in the Anthropology Department at Johns Hopkins. He is currently conducting ethnographic fieldwork on communities of autistic adults in the SF Bay area.
Barak, B., & Feng, G. (2016). Neurobiology of social behavior abnormalities in autism and Williams syndrome. Nature Neuroscience, 19(6), 647-655.
Bogdashina, O. (2003). Sensory perceptual issues in autism and Asperger Syndrome: different sensory experiences, different perceptual worlds. London: Jessica Kingsley.
Elsabbagh, M., & Johnson, M. H. (2016). Autism and the Social Brain: The First-Year Puzzle. Biological psychiatry.
Hacking, I.(2007). Kinds of People: Moving Targets. Proceedings of the British Academy 151: 285-318
Hacking, I. (2009). Autistic autobiography. Philosophical Transactions of the Royal Society 364:1522: 1467-1473.
Markram, H. and Markram K. Interview: Henry And Kamila Markram About The Intense World Theory For Autism. Wrong Planet http://wrongplanet.net/interview-henry-and-kamila-markram-about-the-intense-world-theory-for-autism/
Shapin, S. (2016). Seeing the Spectrum. The New Yorker; http://www.newyorker.com/magazine/2016/01/25/seeing-the-spectrum
Figure 1: Propaganda materials rehearsing the curability of tuberculosis are produced by a variety of institutional actors across India. From left to right: poster from Christian Medical College, Vellore (accessed via US National Library of Medicine); logo from Government of India’s Revised National Tuberculosis Control Programme (RNTCP); and poster from a series developed by the Indian Development Foundation, an NGO.
But what if it isn’t?
Figure 2: Clippings from Indian newspaper reports on the emergence of totally drug-resistant strains of tuberculosis in India.
What would it mean to awaken to a post-antibiotic future, to a world in which the promise of cure has come undone? In December of 2011, a two-page letter appearing in the journal Clinical Infectious Diseases threatened to rouse even the deepest of sleepers from their reverie. In the letter, Dr. Zarir Udwadia and his team at Mumbai’s P.D. Hinduja Hospital announced that they had identified the first cases of totally drug-resistant tuberculosis in India.
“You write a good article, four to five people will ask you for reprints and it dies its natural death,” Udwadia told me when I met him in his clinic in the summer of 2015. “But this,” he said, referring to his letter, “this just took off. Suddenly, drug resistant TB was on everyone’s radar. The papers didn’t stop. It appeared on the front page of the Times of India. It ended up on the BBC, the Lancet, the British Medical Journal, Time Magazine. Have you seen that Time Magazine cover?” Udwadia stood up and began rifling through a drawer. “Somewhere here…” He pulled the magazine out triumphantly and laid it in front of me. “There we are! One of our patients,” he explained, pointing to the cover. “It’s quite haunting.”
Figure 3: Time Magazine cover from March 2013. Photo of Indian tuberculosis patient taken by James Nacthwey.
The photograph in question draws in close to a man’s face. He looks away from the camera, his eyes wide open. His hair falls like straw onto his forehead, and one hand holds in place a gingham cloth wound tightly around his mouth (pulmonary tuberculosis patients are often warned to cover their mouths to avoid infecting others). Quarantined behind the yellow prison bars of the word CONTAGION, the man in the photograph is graphically figured as a threat – as a carrier of an incurable bacterial strain that “threatens us all.”
Indeed, the idea of India as an exporter of disease is nothing new. As far back as the 1860s, commercial interests clashed with epidemic fears in debates about the mandatory inspection and quarantine of ships setting sail from India. More recently, we can hear this threat reverberate in the quarrel between the Indian National Center for Disease Control and The Lancet over the naming of a highly-mobile “superbug” after the city of New Delhi. With regard to tuberculosis specifically, we might consider the case of an Indian woman who was found to be carrying an extensively drug-resistant strain of the disease while visiting relatives across the United States in 2015. The fact that resistance spills over geopolitical borders means that an India after antibiotics might easily cascade into a post-antibiotic world.
Similar to the promise of cure, the threat of resistance opens up an uncertain temporality of anticipation and trepidation, of speculative futures that may or may not come to pass. Such futures have been long in the making. In particular, the history of drug resistance in India stretches back to the country’s first antibiotic trials in 1950s Madras (now Chennai). These trials produced a subset of drug-resistant patients, but the story that carried the day was that a combination of antibiotics provided on an out-patient basis constituted a self-sufficient mode of therapeutic intervention. Those minor voices that preached forbearance failed to dampen the enthusiasm surrounding this new class of drugs. A disease that had plagued humanity since antiquity might finally, it was thought, be put to rest.
Udwadia first encountered resistance at the Parsee General Hospital in Mumbai. It was the early ‘90s, and the patient was an 18-year-old man suffering from hemophilia, hepatitis B and drug-resistant tuberculosis. “We threw everything possible at him,” Udwadia told me. Despite his best efforts, the patient died from exsanguinating hemoptysis: coughing up blood. Prior to the consolidation of antibiotic treatment, the bloody cough was a widely-recognized sign of tuberculosis.
Figure 4: In the 1961 Tamil film Paalum Pazhamum (Milk & Fruit), a devoted wife, nurse and research assistant played by Saroja Devi coughs up blood onto her husband’s white shirt, causing him to put aside his cancer research in order to focus on finding a cure for tuberculosis.
As Udwadia reminded me, it had also been “the usual cause of death” among tuberculosis sufferers. In the wake of resistance, historical signs of the fatality of tuberculosis were returning. In both symptom and symbol, an India after antibiotics might well begin to resemble an India before antibiotics.
I asked Udwadia whether, at the time, anyone had been talking about drug-resistant tuberculosis in India. “It wasn’t seen as a big problem,” he responded. “Which makes you wonder, doesn’t it? Whether the treatment we’ve been getting today has in a sense contributed to this. It didn’t suddenly just come out of nowhere. It was always there, but it was not recognized. What I think really stirred things up is when we gave this moniker of TDR – total drug resistance – to four patients we saw rolling into this very room. These patients were resistant to all the drugs that our lab could test”.
Figure 5: Table enumerating the many drugs to which the patients described in the letter to Clinical Infectious Diseases were resistant.
Udwadia’s letter rattled a hornet’s nest in the Ministry of Health, which dispatched a fact-finding mission to Mumbai. In their report, the team noted that many of these antibiotics lacked standardized resistance tests and that TDR was not a recognized classification. According to Udwadia, government officials demanded that he rescind the letter. He refused.
“A lot of good came from that simple two-page article,” Udwadia insisted. In spite of their initial recalcitrance, he explained, the government invested greater funds into the national tuberculosis program. “The government woke up,” Udwadia told me. “More importantly, people began talking about drug resistance. I began to believe in the redemptive power of the written word.”
The sociologist Michael Löwy draws attention to a sentence from an early draft of Walter Benjamin’s theses on history: “This concept [of the present] creates a connection between the writing of history and politics that is identical to the theological connection between remembrance and redemption” (Löwy 2005:40). For Udwadia, the word awakens and the word redeems, acquiring a kind of messianic power to bring recognition to resistance. Might his letter constitute, in Benjamin’s terms, the writing of history, a history of failed treatments and subsequent microbial transformations? In awakening to the recognition that resistance “was always there,” might it become possible to redeem the past in service of the future? What, then, might therapeutic intervention look like in an India after antibiotics?
“Back to the sanatorium era!” Udwadia exclaimed with a flourish. This was the title of a talk that Udwadia gave on the lecture circuit. “And at times, it feels like that. That there are no drugs left,” he told me.
In India, finding hospital beds for drug-resistant patients has become increasingly difficult. A week before coming to Mumbai, I had spoken with Dr. Anuj Bhatnagar, a senior physician at the sprawling Rajan Babu Hospital on the outskirts of Delhi. Constructed in the 1930s to commemorate George V’s coronation as Emperor of India, this former sanatorium has become one of the largest tuberculosis treatment facilities in the country. Although imperial decoration has been replaced with suitably nationalist iconography, the hospital still retains elements of its original open-air architecture.
Figure 6: Photo of TB patients admitted to Rajan Babu Hospital in Delhi (Source: AFP Photo/Chandan Khanna)
A former TB patient himself, Bhatnagar had recently co-authored a paper that asked whether drug-resistant patients should be treated on an in-patient basis. “Despite the fact that the sanatorium era is over” – he quickly corrected himself – “or deemed to be over, the fact is that a huge group of patients require admission.” In recent years, he added, the admission rates had been quite high. “The patients are having complications from medicines, or from the more severe forms of tuberculosis,” he explained. Bhatnagar told me that he had warned government officials that the national program – premised on out-patient, antibiotic therapy – would “either cure a TB patient or turn him into a drug-resistant case. And that,” he said, “is ultimately what has happened.”
In the most extreme of eschatological visions, a nightmarish future has already taken root in the here and now, but we have failed to recognize it. A critical threshold has been transgressed beyond which lies a return to the dark ages of the pre-antibiotic era.
Figure 7: “We are on the brink . . . If TDR spreads, we will go back to the Dark Ages.”
Put simply, the future is past. By contrast, for those who hold to a faith in the technological outmaneuvering of nature, the near future still allows for recalibration. The relation between human and microbe might once again be set right. The limit to the antibiotic era may have been reached, but it has not been exceeded. Rather than a rupture with the past, such visions are suffused by an intensification of a techno-optimistic strain in Indian political thought that can be traced from Nehru to Modi.
More commonly, the speculative futures that emerged throughout my conversations in India espoused a kind of weak eschatology or techno-pragmatism. The antibiotic era might be over, but antibiotics may still have a role to play in the days to come. Such visions diagnose a break with a techno-optimistic past, although not necessarily a break with technology itself. The critical difference between this moment and an earlier one – a time in which Nehruvian dreams of science for the people upheld antibiotics as a magic bullet – is that these drugs are no longer deemed to be adequate in and of themselves. The dream of antibiotic cure has spawned the nightmare of resistance, and now is the time of awakening. Here, we might think about awakening in a second sense, an awakening of slumbering potentialities, of forms of dying (coughing blood) and modes of therapeutic practice (sanatorium admission) that had by and large been consigned to the past. At the end-of-days of the antibiotic era, remnants of this past are being revived in response to the threat of resistance.
What then might be the role of antibiotics in a post-antibiotic era?
In 2012, the FDA approved the use of bedaquiline, the first new anti-TB drug in forty years. “We’ve seen dramatic results in patients who have received it,” Udwadia told me. Yet, he insisted that bedaquiline was not enough. “When there’s a complete no-hoper, with no chance, resistant to everything else except for this one drug, bedaquiline won’t work. It’s not as if it’s a wonder drug on its own. We need a whole new regime, and we are a long way off from that.”
“So the drug in and of itself is not useful…?” I began to ask.
“Any new drug on its own will be doomed to failure and will go the way of previous drugs. Any new drug.”
“So for the very worst-off of the patients, who have such extensive resistance, it’s not going to work . . .”
“On its own, no.”
For those patients who have already exhausted the available drugs, bedaquiline was an insufficient response. Many also feared that resistance would develop against this new drug as well.
Back in Delhi, Bhatnagar expressed to me that he shared this fear. “We had this fear that the moment a new TB drug was introduced into the market, and into unrestricted use, you will have resistance developing very soon. That’s why the government has very clearly said, no, this will not be licensed for private use in India. If you use bedaquiline with other drugs that are failing, then obviously, you will lose bedaquiline too. If you ask me, if you use bedaquiline without finding the right combination, you’ll start seeing patients with resistance to it within 2-3 years. I’m afraid of that.”
Bhatnagar had identified a fork in the road: if such combinations could be found, and if bedaquiline use could be strictly controlled, then it might prove an effective addition to the therapeutic armamentarium. If not, then bedaquiline would only spur on the development of further resistance. As was the case in the antibiotic trials of the 1950s, it was once again important to find effective combinations to avoid, or at least slow down, the development of resistance. With each new advance, the same questions seemed to recirculate.
One future that Bhatnagar did not anticipate was eradication. I asked him about a recent draft document circulated by the international STOP TB initiative that promoted eradication of the disease.
Bhatnagar lightly chided me for my question. “Do you remember the history of the development of the BCG vaccine?” Developed in the early decades of the twentieth century and rolled-out in one of the largest vaccination campaigns in history, the Bacillus Calmette–Guérin (BCG) vaccine has been found to offer minimal protection against tuberculosis.
“Now I will develop a vaccine and TB will be eradicated,” Bhatnagar said, playfully mocking his scientific forbearers.
“BCG, antibiotics,” I added.
“There’s always been this talk,” he responded. “BCG, streptomycin, then rifampicin, then fluoroquinolone,” he said, rehearsing generations of therapeutic ambition. “This talk continues.”
Historically, eradication campaigns have depended on the production and distribution of effective vaccines (see Jeremy Greene’s earlier post in this series). Whereas cure has been understood to operate at the level of the individual, eradication depends upon the aggregation of individual interventions in order to produce a population-level effect that is greater than the sum of its parts. In fact, eradication should render the question of cure irrelevant. Yet, through the promissory force of antibiotics, cure and eradication had been sutured together in the therapeutic imagination.
I continued to push. “But do you see an end point? Do you see something like eradication ever happening?”
“To be very frank,” he said, “no.”
“We are still,” he reminded me, “a significant number of years away from developing a vaccine. We are still a significant time away from developing a prophylactic medicine. We are still unable to test a regimen that is short enough for compliance to improve. If someone says, ‘this is a magic bullet,’ I’m sorry, but I would not accept that.”
Back in Mumbai, I posed the same question about eradication to Dr. Udwadia.
“I think eradication is a catchy global mantra that sounds good in Geneva,” he said, “where they never see any TB anyway. It’s a mantra that doesn’t translate to the real world.”
Yet, dreams of eradication continue to circulate in India alongside the promise of cure. In December of 2014, at a press event in Mumbai, the Bollywood actor Amitabh Bachchan revealed that he had been treated for tuberculosis during the filming of his popular quiz show Kaun Banega Crorepati. “I used to wake up feeling weak,” he noted. “Today, I am standing in front of you completely cured.”
In his new role as brand ambassador for India’s anti-TB campaign, Bachchan underscored the affinity between cure and eradication. Tuberculosis, he explained, is a “curable disease and we must spare no effort to take our country towards the target of zero TB deaths.”
Figure 8: As India’s anti-TB brand ambassador, Bachchan starred in two television advertisements produced by the marketing masters at Ogilvy & Mather, the communications firm behind the “Incredible India” campaign. In one ad, this former “angry young man” of Bollywood assumed the role of an auto driver who hijacks a man and woman on their way to the movies, taking them instead to the hospital. She has been coughing for over two weeks, she might have TB, he warns, but don’t worry: with treatment, she too can be cured. These short clips conclude with the pithy tagline “TB harega, desh jeethega” – tuberculosis will lose, the country will win.
Bachchan went on to contrast the therapeutic poverty of the pre-antibiotic past with the resplendent efficacy of the present. “Earlier, TB patients used to be sent to sanatoriums,” he explained. “Nowadays there are good medicines. There is nothing more that you need to do apart from taking medicines on time.” As the line between the pre-antibiotic era and the present blurs, Bachchan’s speech represents a recommitment to the promise of cure. Yet, we might wonder whether such a promise threatens to restore us to our sleep, to a dreamworld in which the therapeutic forms of the past remain dormant and antibiotics retain their efficacy.
Bharat Jayram Venkat is a postdoctoral researcher in the Program in Global Health at Princeton University. He is currently at work on a book manuscript, India after Antibiotics: Tuberculosis at the Limits of Cure, an ethnographic and historical study of tuberculosis treatment in India from 1860 to the present. Beginning in the fall of 2016, he will be Assistant Professor of Anthropology at the University of Oregon.
In advance of our regular monthly journal round-up, here are two special issues to check out! First, the brand new June 2016 issue of East Asian Science, Technology and Society is titled Transnational Psy Sciences in East and Southeast Asia. Next, a special double issue of Eä – Journal of Medical Humanities & Social Studies of Science and Technology (open access) is titled Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology. Enjoy!
From the 1970s onward, the psy sciences were witness to blustering confrontations from a New Age movement heavily informed by Asian philosophy. Nowadays, yoga practices and mindfulness training have been integrated into mainstream psychotherapy. Nevertheless, such trends toward East-West admixing are in fact not at all new. Through four case studies, this special issue provides empirical data complementing the abundance of new scholarship on the history of psy sciences in East and Southeast Asia.
Making and Mapping Psy Sciences in East and Southeast Asia (open access)
Harry Yi-Jui Wu, Wen-Ji Wang
The rich history of psy disciplines or psy sciences (psychology, psychiatry, psychotherapy, psychoanalysis) in modern society has been subject to different and sometimes conflicting interpretations. Major events, theories, and figures have been recorded and the meaning of their contributions explored to illustrate the ways in which various forms of psychological knowledge become important sources of self-understanding and self-actualization. Insights into the social and cultural history of psy sciences enable us to understand the interconnection between forms of knowledge and the social order to which they relate (Eghigian et al. 2007; Engstrom 2008). From a more radical perspective, Michel Foucault has famously written histories of rising human sciences so as to identify the construction of the self in relationship to the operation of the power/knowledge matrix since the nineteenth century. In Psychiatric Power (2006), for instance, he associates the development of psychology, criminology, and psychopathology to the functioning of disciplinary mechanisms in modern society. As he explains, the “psy-function was the discourse and the establishment of all the schemas for the individualization, normalization, and subjection of individuals within disciplinary systems” (85).
Following both the Foucauldian genealogical tradition and the aesthetic turn in the French philosopher’s later thought, the British sociologist Nikolas Rose brings into sharper relief the intricate connection between the proliferation of psy disciplines and the changes in governmentality and subjectification. In an era that values democracy and individual autonomy, a variety of new ways of understanding and relating to techniques of self have been invented, which have also become the inescapable means through which modern selves can be realized. Rose (1998) believes that the contemporary regulative ideal of the self can be “destabilized” and “denaturalized” by historical investigations into the mechanism of self invention.
Mental Illness in Singapore: A History of a Colony, Port City, and Coolie Town (open access)
Kah Seng Loh
The case of Singapore explores the history of mental illness in a British colony, port city, and Chinese coolie town. As a colony, Singapore not only received Western psychiatric expertise from the metropole but also suffered from the inner contradictions and failings of colonial rule. The mental asylum thus had a both modernizing and marginal role. As an international port city, Singapore was a major center for internationally crisscrossing flows, yet the transnationalism in mental health policy remained connected to colonial power in two ways: the British simplified the culturally diverse patients into distinct, subordinate races and transferred them between Singapore and other countries. Singapore was also an unruly “coolie town” where, utilizing the weapons of the weak, Chinese sufferers contested the psychiatric regime in the asylum and continued to seek treatment and care beyond it. Their ability to do so depended, however, on the specific circumstances that prevailed in the individual, asylum, and coolie town, and their agency was expressed in relation to the colonial system rather than independent of it.
The high prevalence of neurasthenia and its divergent social and cultural meanings in the late nineteenth and early twentieth centuries has been subjected to historical and anthropological studies. The present study explores the history of this elastic diagnosis in relation to the rise of “psy disciplines” in Republican China. Since the 1920s, emergent Chinese neuropsychiatric and mental health professionals eagerly entered the already vibrant culture of neurasthenia and provided their explanations. As China was under different spheres of influence, diverse systems of psy knowledge were practiced in the country. Differences in the conception of the nature of the disease were further intertwined with various reform projects with which these bodies of psychological knowledge were associated. Despite being the products of scientific internationalism, these discourses not only resonated with the epistemological and social concerns derived from Japan, Europe, and, gradually, the United States but generated their own ideas of personal, social, and national regeneration. By examining the history of neurasthenia in the light of the interactions among popular culture, the advent of modern psychiatric and psychological knowledge, and Republican China’s striving for modernity amid social turmoil, the article contributes to our understanding of medical culture in modern China.
Religion, Psychiatry, and Psychotherapy: Exploring the Japanese Experience and the Possibility of a Transnational Framework (open access)
Christopher G. Harding
This article offers a four-part framework for exploring the complexities and nuances of a modern and contemporary phenomenon in health care and broader public discourse in many parts of the world: the “religion-psy dialogue,” the increasing interchange between the thinkers, leaders, and laypeople of the world’s religions and the professionalizing and expanding “psy disciplines”—principally psychiatry, psychology, and psychotherapy. The four parts outlined here—circumstances and orientations, the human person, language, and complementarities and antagonisms—reference the Japanese context in particular but build on experiences elsewhere in the world and are intended to be useful multinationally and transnationally.
This article illustrates the exchange of knowledge, sharing of methods, and formation of collaborative research between Taiwan and the World Health Organization (WHO) by discussing a series of large-scale epidemiological studies on mental disorders conducted by the research team of National Taiwan University Hospital in the early postwar years. This article focuses on the purpose, importance, and legacy of the research within Taiwan and in the international social psychiatry projects led by WHO. The author analyzes the active and passive roles that these studies played in the context of postwar decolonization and the short-lived milieu of scientific internationalism aspired by the United Nations and its specialized agencies. WHO’s demand to outsource experts from developing countries was due to the lack of sources and enthusiasm of experts from Taiwan to participate in intergovernmental organizations and the self-fashioning of psychiatrists in Taiwan in order to build a national medical discipline that facilitated the connubiality between the two. Moreover, the psychiatric epidemiological research conducted in Taiwan was influenced by the survey-based Japanese ethnological studies developed in the first half of the twentieth century and was designed to build a national medical discipline after World War II. This type of research corresponded to the visions of international scientific communities to deracialize human sciences and fulfill the pursuit of knowledge on the basis of the WHO ideology of “world citizenship.” The cultural determinism approach matched the dominant neo-Freudian theories of psychopathology, which depart from the biodeterminism derived from the experiences of colonial psychiatry, and provided the foundation for the universal profiles of mental disorders that WHO mental health experts idealistically attempted to establish.
Introduction (open access)
Philippe Bardy, Justine Laurent, Mauro Turrini
Over the past decades technological innovations such as digital technologies, genomics, and bio-nanotechnology have been promoted as means of improving “health”, a term that was broadly defined by the World Health Organization in 1946 as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Access to “molecules of life”, miniaturized diagnostic devices or health-related connected objects have greatly intensified and accelerated the pace of production, circulation and sharing of health data, thereby reconfiguring the traditional relationship between medicine and society. While “biomedicalization” is often used as a term of reference to describe this social phenomenon, we choose to refer to the concept of “healthism” (“santéisme” in French) as it underscores the current development and dissemination of individual practices of biomedical techniques. People’s engagement with, or even appropriation of, new medical technologies and knowledge, both inside and outside medical institutions, have led to the opening of frontier zones of expertise and to the development of borderline practices, half-way between medicine and self-care, resulting in the multiplication of patient figures across biomedical platforms, processes and technologies. These major shifts in medical practices require a critical examination. Healthism must also be questionned if we are to gain a better view of the reconfiguration of the body and life through science and technology today.
A genealogy of “healthism”: Healthy subjectivities between individual autonomy and disciplinary control (open access)
Healthism is a sociological concept that has circulated widely outside of academia, while is it rather neglected by social sciences. This article intends to propose its genealogy in order to revitalize this term and to propose it as an analytical framework able to grasp some of contemporary tendencies marked by the centrality of individuals. After an historical excursus of healthism, which began as a spin-off of the well-known term “medicalization”, the article proceeds by exploring the legacy of this notion for contemporary analysis of the expanding sector of illness prevention and prediction as well as health/wellness promotion and optimization. In particular, it focuses on the establishment of lifestyles and risk factors as the vector of medical devices, practices, and concepts in society. Instead of looking at these changes in spatial terms, as either an expansion or a shrinking of medical discourse, healthism provides an analytical framework attentive to the relationship with medical power, technologies and data inherent in emerging medical subjectivities.
Beyond Traces: Towards a socio-anthropology of digital health (open access)
Digital health technologies may first be characterized by great ambivalence. They reflect new modes of social emancipation while giving material form to new control methods (biopower, surveillance medicine) with certain well-known characteristics or features that have yet to be deciphered. Rather than being formal, such ambivalence is the starting point for our understanding of the social dynamics resulting from the use of health technologies. “Traces”, which it is the overall aim of current technological apparatuses to collect, store and process, have a diametrically opposed meaning depending on whether or not they are construed as the outcome of a collective effort or underlying “political project”. This article thus questions the various, often contradictory, significations that are induced by the use of domohealth and social networks.
Patient empowerment: A practical approach to guide ethical decision-making in telemedicine (open access)
This article aims to clarify the concept of patient empowerment and to assess its ethical implications in modern telemedicine. To achieve this goal, it provides a review of the ICT-based tools used by patients in telemedical settings, known as “Connected Medical Devices” (CMD), as well as an overview of some of the most advanced e-health systems enabling remote communications between patients and health practitioners today. Patient empowerment, it is then argued, is a capacity-building process whereby personal and inter-personal transformation may be achieved. Furthermore, it is a practical approach to ethical decisions, based on shared decision-making, with a focus on patient autonomy and self-determination. These views are consistent with telemedicine’s main objectives, but also with the spirit of a new politics, and a new ethics, of vitality and “transformative” patient empowerment.
Technologies of Compliance? Telecare technologies and self-management of COPD patients (open access)
Ivo Maathuis, Nelly Oudshoorn
In current healthcare discourses self-management has been articulated as one of the major aims of telecare technologies for chronic patients. This article investigates what forms of self-management are inscribed during the design of a telecare system for patients with COPD (Chronic Obstructive Pulmonary Diseases) and enacted during its use. Based on an analysis of the design and use of this telecare system, the paper shows that there are important differences between self-management approaches incorporated in the telecare system and the self-management strategies adopted by patients. The telecare equipment was designed in such a way that it incorporated forms of self-management based on compliance. It disciplined patients to adhere to medical treatment and an activity regime rather than involving them in shared decision-making with healthcare professionals. However, the used practices reflected self-management approaches based on collaboration and concordance between healthcare professionals and patients, including integration of their experience based knowledge. Patients domesticated the devices in such a way that they became adjusted to their daily routines and embodied experience with managing their illness.
Doing Things with Numbers: The Quantified Self and the Gamification of Health (open access)
Software applications are changing our relationship with health. Individuals who intensively self-track their activities and physiological states, the so-called “Quantified Selfers”, think that a data-driven life can enhance their health status. Indeed, recent research has demonstrated the effective utility of some of these devices. In addition, “gamification” – that is the use of game design elements in non-game contexts – can serve to increase individuals’ health. Gamification facilitates and supports our pursuit of goals and appears to enhance performance. However, while apps seem to support health, there are some risks to be considered: quantification and gamification can foster a neoliberal idea of health as a personal responsibility, bracketing the fundamental role played by social determinants in shaping health status. Moreover, some health insurance companies are rewarding individuals who agree to share their self-tracking data with them. The risk is that what is an individual option today may become a social constraint or requirement tomorrow.
Healthscapes of self-quantification: Quantifying, knowing and improving one’s self: transforming health (open access)
Self-quantification practices are often described as knowledge-making, as the maxim of quantifiers – “self-knowledge through numbers” – makes clear. In this narrative, data is knowledge, knowledge is power, and knowing oneself is central to endeavours to improve health. This article complicates this story, investigating other health-related practices of self-quantification. Moving beyond “knowledge” to attend to the various “doings” embedded in the activities of quantifiers permits a framing of self-quantification not so much as an epistemological quest but rather as a series of practical interventions. This shift to understand self-quantifying as a diverse set of doings rather than simply knowing, provides an opportunity in the remainder of this article to reassess the way quantifiers transform contemporary “healthscapes”; that is the material-semiotic constellations of health. In my conclusion, I argue that self-quantifying practices can be read as a trend of changes in health that is twofold: on the one hand, there is a chronicization of risks, and, on the other, a vision of health as enhancement. These can be plotted along the axes of the normal and the pathological, offering a potentially different reading of the quantifiers’ modes of intervening in the self.
Doping oneself cautiously: A critical approach of Healthism (open access)
This article studies the questions on doping and on the fight against doping in reference to healthism. One can interpret these social activities as expressions of health practices reshaping and strengthening the relations between patients, their health and the medical staff. The analysis of three chat forums (we have examined more than 244,000 messages altogether), highlights on the one hand, that powers cannot be identified in a permanent way and, on the other hand, that the Internet users are leading inquiries collectively. A pragmatics of powers interested in the asymmetries of “grips/grasps” and of “influence” (Chateauraynaud, 2015) allows us eventually to describe subtly these complex processes.
From savvy consumers to informed risk managers: Shifting images of medical self-care (open access)
In February 1889, a 26 year-old Brooklyn woman, Ida Hunt, was told by a well-known surgeon, Mary Dixon Jones, that she suffered from an internal tumor that may burst and put her life in danger. Upon Dixon Jones’s advice Hunt underwent an abdominal surgery, developed a peritonitis and died. The Brooklyn newspaper, The Eagle, used Hunt’s death to mount a campaign against Dixon Jones, accusing her of being a knife happy, sadistic and corrupted practitioner, who persuaded naive women to undergo unnecessary and risky operations. In fact, Hunt was a savvy consumer of medical services, who consulted numerous doctors for her severe gynecological complaints, carefully evaluated her options, and in all probability elected Dixon Jones precisely because she advocated radical surgical solutions. In 2008, the company 23andMe included mutations in BRCA genes which predispose for breast and ovarian cancer in their “health package”. The company’s experts gathered testimonies from grateful clients who found out unexpectedly that they were BRCA mutation carriers and decided to undergo prophylactic surgeries (ablation of ovaries, and, for some, mastectomy). 23andMe lost in 2013 the right to propose health information in the US, but in the same year the American College of Medical Genetics and Genomics (ACMG) recommended to include BRCA mutations among incidental findings that should be reported to patients. This recommendation, and the 2014 proposal to generalize the testing for BRCA mutations, were made in spite of lack of firm data on efficacy of preventive measures to reduce cancer deaths in mutation carriers, especially those without a family history of breast and ovarian malignancies. People, advocates of BRCA testing argue, have the right to know about their health risks in order to be able to make informed decisions about their management. This article takes these two cases as a starting point of reflections on continuity and change in self-care practices, with an accent on their gendering.
Denying human biology as destiny (open access)
The inclination to deny the “human body as destiny”, beyond the limits of healthism, seems to have increased over the last fifty years. Regaining one’s own physicality, which certainly represents a recurring trend in history, has become, since the middle of the 20th century, an ardent obligation. To facilitate a better understanding of this phenomenon, however, we must distance ourselves from “health issues” as social constructs. Our growing concern with our own physical re-appropriation of the self has become apparent, for instance, in the way we handle birth and death today: many examples attest to this. It is as though we were witnessing an acceleration, somewhat singular, of the process of individuation: an acceleration that relies on the human body as a prime location for its own realization. To make sense of this phenomenon, we suggest to read again Norbert Elias with Michel Foucault.
Patients in the Digital Healthcare Ecosystem (open access)
This paper is the transcript of the talk that was given at the Healthism & Self-Care Conference held at the Sorbonne University on December 12, 2014. As Vice-President of the French Medical Board (in French, Conseil National de l’Ordre des Médecins), the author aims to examine how digital health technologies impact patients today. To achieve this goal, he first addresses the ethics of telemedicine by asking three fundamental questions: Is telemedecine a progress for patients in terms of well-being and health preservation? Does telemedecine enhance patients’ autonomy? What are the real benefits of digital health devices and connected objects for patients? The author then goes on identifying and discussing some of the potential threats of digital health technologies to patients in terms of privacy and individual rights. Finally, he adresses the issues of the regulation of the telemedical industry on the basis of rules of law and ethical guidelines.
We’re a medical anthropologist and a literary critic, and while our research interests seemingly have little overlap, we found ourselves engaged in a series of conversations about how the language of diversity shapes representations of disability and reproductive politics, and how this representation stems from the biopolitical management of life in the twenty-first century. In the short essay that follows, we’ll reflect on the ways that diversity discourses have become an organizing concept for some disability and deaf scholars and activists. We’ll show how in conversations about prenatal testing for disability, in political claims made about the value of deafness and disability in international arenas, and in popular media representations of deafness and disability, deafness and disability are often (re)presented as forms of diversity. In particular, we’re interested in the ways that a focus on disability or deafness as diversity works to erase difference, or to present difference as easily surmountable through a rhetoric that erases the actual difficult work of what Wendy Brown has called, “making a world with others.”
Sociologists and critical race and feminist theorists, among others, have long critiqued diversity as a tool in neoliberal political economies that works to promote the status quo through “feel good” politics (see, for example, Ahmed 2012; Brown 1995; Faist 2009; Vertovec 2012); we’d like to extend this critique to look at how appeals to diversity are employed in disability discourses. We believe that this move from disability to diversity functions as a form of biopolitics because it works simultaneously to enable and obscure the means by which the state manages life in an increasingly neoliberal world. If biopolitics is a mechanism for categorizing, optimizing, and governing life on both an individual and population level, the category of diversity provides a powerful means for such governance. Through this process of population level identification, diversity comes to replace other (individual) categories of differentiation such as disability and deafness. Instead of seeing herself as an individual “deaf” person for example, a person will see herself as a member of a diverse global/human/national/[substitute your category here] body. In this framework individuals are paradoxically expected to contribute to such diversity by channeling any marker that signifies them as different towards the production of diversity. It’s through this performance of (and identification with and through) diversity that categories that mark difference are smoothed over. This occurs through a process of normalization, where normalization entails not removing difference but resignifying and representing it as diversity. As such, disability as diversity figures as the route to acceptance and harmony. While Vertovec (2012) has argued that diversity is a top-down framework that corporations and other entities utilize to effectively manage difference in ways to their own benefit, there has also been a shift to utilizing the framework of diversity from the ground up: the individuals and communities with which we are concerned are themselves utilizing diversity discourses and are actively working to frame themselves as “diverse” and as contributing to diversity. They engage in such diversity claims instead of and in contrast to framing themselves as disabled.
In a 2006 essay, Nikolas Rose and Paul Rabinow outline the genealogy of Michel Foucault’s concept of biopower which they argue is taking on new configurations with the emergence of a “bioethical complex” that exists in direct relation to the marketplace and capital (203). In this assemblage, patient groups and invested individuals operate according to biosocial principles in order to make demands on the state and the pharmaceutical industry to develop interventions, cures, and policies. For them, biosociality is based on shared racial, ethnic, gender, health, and disability status, among other axes of differentiation. In the examples that we analyze in what follows, individuals, communities, and scholars approach biosociality in terms of individuals’ ability to contribute to human or biological diversity, a category not (explicitly) considered by Rose and Rabinow. In our understanding, biosociality is based not only upon specific individually-held categories of differentiation but also through claims to a universalizing diversity. In other words, to be biosocial is both to claim difference and to try to subsume it in the name of diversity.
In a 2014 much-anticipated Deaf Studies book titled Deaf Gain: Raising the Stakes for Human Diversity, editors Bauman and Murray argue that deafness is not an evolutionary error but a natural part of human existence as evidenced by the fact that the 400 or so known deaf genes have not been ushered out through the evolutionary process. The editors of the collection write, “When we look through the lens of biocultural diversity rather than normalcy, we are better able to move beyond the single story of deficit to the many stories of complex cause and effect. In this reckoning, what could be considered a pathological condition—deafness—could instead be seen as a contributor to a more robust social and cultural ecology.” Their argument, and the argument of many of the book’s contributors, is that deafness should be seen as a form of diversity and not deviation. And thinking through diversity, according to Bauman and Murray, is a means of moving beyond both the social and cultural models of disability, which they argue have not been entirely successful in alleviating stigma and combatting discourses of normalcy (xxi).
The World Federation of the Deaf, an international advocacy and development organization affiliated with the International Disability Alliance has also focused on deafness-as-diversity. The theme of its most recent congress in summer 2015 was “Strengthening Human Diversity,” and one of the conference’s stated goals was to promote the idea that deaf people are part of global human diversity. The International Congress on Education for the Deaf, also held in summer 2015, was focused on the theme of “Educating Diverse Learners: Many ways, one goal.” United States-based deaf communities have also taken up these themes. Consider a recent ten-minute mock documentary made by a deaf-owned communications and technology-focused non-profit called Communication Services for the Deaf. The film, Beyond Inclusion, stars Deaf model and current Dancing with the Stars contestant Nyle DiMarco. In it, a sinister plan is hatched to genetically engineer the human race and to remove all disabilities (including deafness) from the gene pool. However, “Human Diversity Now” activists learn about these plans and begin a campaign to “save” diversity and to promote human variation. The activists are particularly enamored with a potential president and leader of the cause who happens to be a sign language-using wheelchair-using woman who is also pushing for a new law called the Human Diversity Act of 2024 that will replace the Americans with Disabilities Act of 1990. The film ends with an argument for “Deconstruct[ing] Disability,” and the statement that “diversity makes us stronger.” In an interview, Communication Services for the Deaf’s CEO stresses the need to abandon or throw away the word disability in favor of the concept of diversity. A FAQ sheet on the website created for the film explains, “We believe that ‘disability’ is a label and a category that confuses, rather than clarifies. Confusion often breeds fear — and unnecessary fears result in higher unemployment and illiteracy. If we deconstruct it, we will discover what might otherwise be overlooked.” This quotation is revealing in its focus on marketplace logic and its desire to render disability palatable and appealing. In fact, the film employs a number of actors of color, including a tie-wearing black man with his adorable son, to implicitly compare disability to race. These scenes suggest that disability, like race, is just another form of diversity, but in making this comparison the film flattens out difference and its historical, social, and economic markers. Still, the film has received enthusiastic support and has been circulating widely in deaf worlds. We are interested in parsing out the stakes of what it means to move “beyond disability” and toward “diversity” and why this message might be so popular.
For Rose and Rabinow (2006:197), a crucial component of biopolitics is that “individuals are brought to work on themselves, under certain forms of authority, in relation to truth discourses, by means of practices of the self, in the name of their own life or health.” In contrast, our examples above present arguments that suggest that individuals need to work on themselves not (or not only) in relation to their own lives or health, but rather, in relation to more globalized discourses about human diversity. This seems to be moving away from disability categories and previous ways of understanding disability. Prominent theories of disablement in disability and deaf studies (i.e. Lane 1992) have closely analyzed the emergence of modern medicine and the classification systems that accompanied it. These systems fixed, diagnosed, and classified disabled people through diagnostic categories and placed them squarely within medical regimes of intelligibility. That is, after failing a hearing test, for example, a deaf child received the medical diagnosis of deafness. This medical diagnosis then provided the conditions of possibility for becoming a member of a deaf community or engaging in another biosocial configuration. However, we wonder what kinds of biosociality does the concept of human diversity enable? It seems to us that in focusing on diversity, such categories — which can be utilized to make social, political, and economic claims — are obscured. Individual differences are subsumed by population-level diversity claims.
Along related lines, feminist disability studies scholar Alison Piepmeier has argued that “disability is an embraceable form of human diversity.” Similarly, in a 2012 article in the Journal of Bioethical Inquiry, Rosemarie Garland Thomson, also a feminist disability studies scholar, makes the case that disability should be conserved, intentionally drawing on the language of conservation used by environmentalists who call for saving biodiversity. She believes that attempts to eliminate disability (primarily through prenatal testing and abortion) not only engage in new forms of eugenics but also impoverish the human experience. Garland Thomson doesn’t explicitly name our contemporary moment biopolitical, but her arguments gesture toward the recognition that biopolitics govern our behaviors, our understandings of our bodies, our desires for normativity, and our fears of embodied difference. Bodies in the twenty-first century are constantly managed by the state and marketplace, and that management often works on a molecular level that is obsessed with how our bodies function physiologically. Yet, by not directly addressing how this management works, how it’s deeply tied to a capitalist marketplace that upholds individual choice over all else, we believe that while she, and others making similar arguments, are positioning their claims in opposition to the normalizing forces of biopolitics, they are actually themselves biopolitical—and thus establishing new norms—in their insistence that human diversity is a goal towards which people should aspire. In other words, her argument ends up holding women responsible for reproducing in the name of diversity (setting up norms for women’s reproduction), and in doing so—in equating Tay Sachs and Down Syndrome as equally contributing to human biodiversity—she glosses over the economic, social, and political factors that exist in relation to different forms of disability.
In a 2015 post on Somatosphere, Faye Ginsburg and Rayna Rapp draw upon demographic research to provocatively argue that disability is the “new normal” and that increasing numbers of people will experience disability of some form in their lives, as a result of aging, warfare, and the prevalence of new diagnostic categories. They hope that with this “new normal” some degree of public and political recognition of disability will accompany the proliferation of new “disability publics.” In contrast, however, the representations of disability and deafness in terms of diversity which we analyze are another kind of “new normal,” one presumably (and problematically) without disability (after all, we are told that we need to deconstruct disability and move beyond disability in these representations). This is ironic because many of the attempts to represent deafness and disability as diversity are concerned with trying to carve out a space for deaf and disabled people in the world in the face of genetic testing and new medical technologies. What does it mean to erase the very category that you are trying to preserve?
As our examples also show, by presenting disability using the language and performance of diversity, what’s lost from the conversation is how disability is rendered into a marginalized category through social, political, and economic practices. The concept of diversity is implicated in a biopolitics that intentionally subsumes the ways in which disability is socially, politically, and economically produced (in relation to impairment) and which attempts to erase difference. Instead, we’re arguing for a recognition of difference, and the ways in which a biopolitical system is both implicated in practices of disablement and creates the categories on which it rests. It’s only then, we believe, that–to return to Brown again–we can make a world with others.
Acknowledgements: We wish to thank Liz Lewis and Kyla Schuller for helpful feedback on drafts of this essay. Michele also wants to acknowledge Annelies Kusters, Maartje De Meulder, and Steve Emery for generative conversations on deafness and diversity.
Michele Friedner is an assistant professor of Health and Rehabilitation Sciences at Stony Brook University. Her book Valuing Deaf Worlds in Urban India was published by Rutgers University Press in 2015. Karen Weingarten is an assistant professor of English at Queens College, CUNY. Her book Abortion in the American Imagination was published by Rutgers University Press in 2014.
Ahmed, Sara. 2012. On Being Included: Racism and Diversity in Institutional Life. Durham, NC: Duke University Press.
Bauman, Dirksen, H-L. and Murray, Joseph. 2014. Deaf Gain: Raising the Stakes of Human Diversity. Minneapolis: University of Minnesota Press.
Brown, Wendy. 2006. “Learning to Love Again: An Interview with Wendy Brown.” Contretemps: An Online Journal of Philosophy. <http://sydney.edu.au/contretemps/6January2006/brown.pdf>
—. 1995. States of Injury: Power and Freedom in Late Modernity. Princeton: Princeton University Press.
Davis, Lennard. 2015. Diversity. In Rachel Adams, Benjamin Reiss, and David Serlin, eds. Keywords for Disability Studies. New York: New York University Press. Pgs. 61-64.
Faist, Thomas. 2009. “Diversity- a new mode of incorporation.” Ethnic and Racial Studies. 32(1):171-190.
Garland Thomson, Rosemarie. 2012. “The Case for Conserving Disability.” Bioethical Inquiry 9: 339–355.
Lane, Harlan. 1992. The Mask of Benevolence: Disabling the Deaf Community. Knopf: New York.
Piepmeier, Allison. 2013. “The Inadequacy of ‘Choice’: Disability and What’s Wrong with Feminist Framings of Reproduction.” Feminist Studies 39 (1): 159- 187.
Rabinow, Paul and Rose, Nikolas. 2006. “Biopower Today.” BioSocieties. 1:195-217.
Rapp, Rayna and Faye Ginsburg. 2015. Making Disability Count: Demography, Futurity, and the Making of Disability Publics. Somatosphere.net
Vertovec, Steven. 2012. “‘Diversity’ and the Social Imaginary.” European Journal of Sociology. 53(3): 287-312.
Weingarten, Karen. 2016. “Testing Eugenics.” Avidly: A Los Angeles Review of Books Channel. <http://avidly.lareviewofbooks.org/2016/03/10/testing-eugenics/>
 Lennard Davis (2015: 61) presents the following simple definition of diversity: “that despite differences, we are all the same—that is, we are humans with equal rights and privileges.” Going forward, we critique an overemphasis on sameness and the categories of difference that it erases.
 We note that there will always be disability categories that remain outside of diversity representations and claims, categories which are unassimilable and associated with “feeling bad,” although as we discuss below, scholars such as Rosemarie Garland Thomson have argued for including all disabilities in the name of enhancing biodiversity. We wonder, however, whether true and absolute inclusion is possible. For isn’t the concept of inclusion premised on the exclusion of some individuals or groups?
 After the conference, there was a significant debate about the failure to include signed language users in the conference through providing interpreters. One of the conference organizers made a point about the needs of deaf people being very diverse and impossible to accommodate, thus using diversity discourses as a means to not provide access. See language policy scholar Maartje De Meulder’s Pigs Can Fly blog.
In The Anti-Witch, Jeanne Favret-Saada revisits fieldwork she first described in her classic Deadly Words: Witchcraft in the Bocage in a more reflective mode and conceptually ambitious mode. Made available as an open-access monograph by HAU Books, this translation introduces English-language readers to Favret-Saada’s encounters with the “dewitcher” Madame Flora and outlines the foundations for an anthropology of therapy. We hope you enjoy these commentaries on The Anti-Witch.
Who’s Playing the ‘Nazi Card’ in Anthropology?: Rhetorical Spectres of Anti-Semitism in the BDS Debate by David Rosen
Two recent articles by BDS leaders in anthropology have accused boycott opponents of debasing the debate in anthropology, either by playing the “Nazi card” or by introducing the “whiff” or “stench” of anti-Semitism into the arena. The first, Lisa Rofel and Daniel Segal’s piece, “J’Accuse: How Not to Have a Political Debate about BDS,” was recently published in Savage Minds. The second, Nadia Abu El-Haj’s “Disciplinary Peace Above All Else?” was published in Somatosphere.[i]
The first words of the Segal and Rofel piece – “J’Accuse” – strike an odd note. These historic words dominated the open letter by the French writer Emile Zola protesting the trial and conviction of Alfred Dreyfus, one of the most infamous anti-Semitic episodes in French history. Theodore Herzl, the founder of modern Zionism, who was a journalist in Paris at the time, said that it was the Dreyfus trial that made him a Zionist. Clearly, this has not happened to Rofel and Segal. Indeed, the most important part of their piece is its clear revelation of the true aims of the boycott movement in anthropology: the negation of the right of the Jewish people to self-determination and the end of the State of Israel as a Jewish State. Nevertheless, perhaps unwittingly, by invoking the Dreyfus affair Rofel and Segal make plain the difficulty of untangling Zionism and anti-Zionism from anti-Semitism.
Rofel and Segal assert that we should not write out of history the “many Jewish critics of Zionism including scholars, Orthodox and Mizrahi Jews.” It is true that there have been Jewish critics of Zionism in history, including communists, socialists, Jewish Bundists, and early leaders of Reform Judaism. It is no surprise to anyone that there is a diversity of opinion in the Jewish world. In the past, the anti-Zionist Jews had a particularly important symbolic value for the Left, and the political tropes that Rofel and Segal draw upon long preceded the establishment of the State of Israel. For the Left, Jews were a force for good — so long as Jewish life and identity was devoted to so-called “progressive” causes. Otherwise, Jews were an obstacle. There is almost no middle ground. Rofel and Segal continue to use this “good Jew/bad Jew” dichotomy, telling us that Jews have only two choices: “ethnic chauvinism” (Jewish self-determination and Israel) or “commitment to our fellow human beings, Jews and non-Jews alike.” This is made crystal clear in their dismissal of Israeli writer Amos Oz’s attempts to grapple with the difficulties of Jewish nationalism, their unqualified endorsement of the Palestinian right of return, and their declaration that Israel is a failure. The Jewish right to self-determination as a people has no place in this world.
It is in this context that Rofel and Segal accuse some anthropologists of “playing the Nazi card.” Comparisons to Nazism always create controversy. The philosopher Leo Strauss coined the term Reductio ad Hitlerum for arguments that invoke guilt by association with Nazism. Nonetheless, it is almost impossible to untangle Jewish history and the creation of the State of Israel from anti-Semitism and Nazism. After the Holocaust, thousands of Jewish survivors flooded Israel, which today is still home to the great majority of Holocaust survivors in the world. How surprising is it that when boycott advocates proclaim a logical difference between anti-Zionism and Anti-Semitism, it falls on deaf ears? The emergence of Zionism and the State of Israel is not the product of logic or the parsing of language, but is the product of history, and history has taught a very different lesson. Anthropologists like Richard Shweder have not “played the Nazi card” by explaining that the boycott of Israelis and Israeli Institutions has deep and troubling resonances in the Jewish and Israeli world.[ii] After all, one of Hitler’s first anti-Semitic acts after he came to power was the national boycott of Jewish businesses. Are Israelis and Jews supposed to write this out of history? Explaining, as Shweder does, the way many Israeli and American Jews understand something is not “playing the Nazi card,” but rather keeping faith with the basic tenets of anthropological explanation since the days of Malinowski.
All their current noise about the “Nazi Card” should not be surprising, for from the very beginning of the academic boycott campaign in anthropology, its leaders have sought to draw our attention away from the social and political context of the boycott. They have asked one simple thing of us: stop thinking like anthropologists. They ask us to pretend that a boycott of Israeli academic institutions is not the same as a boycott of the individuals who live and work within these institutions. They ask us to pretend that we can understand the boycott resolution without regard to the actions and behaviors of the worldwide social and political BDS movement and the voices of its leaders. They ask us to pretend that the AAA can join a movement which calls for an end of Israel as a Jewish State without having to address the issue of anti-Semitism. They say: Look at what we tell you – not what you actually see. In short, they ask us to disregard our entire professional training and the teaching that we do every day of our lives in order to vote for their boycott. Abu-El Hag is certainly entitled to her position, for as she makes clear, in her view the question of Palestine trumps the importance of anthropology or indeed of anything else. But should this really be the official position of the entire profession?
None of this critique of the boycott movement is intended to sidestep the issue of Palestinian rights or of the corrosive tragedy of the occupation. There are two main groups in anthropology that oppose the boycott. The first group, Against the Boycott, focuses almost entirely upon the impact of a boycott upon academic freedom, and has taken no particular position on the Israeli-Palestinian conflict. The second group is Anthropologists for Dialogue on Israel and Palestine (ADIP). The leaders and members of ADIP are Israeli and American anthropologists who oppose the occupation and who seek full equality of Jewish-Israeli and Palestinian-Israeli citizens of Israel within the State of Israel. They are also supporters of the two-state solution: a State of Israel and a State of Palestine.
Rofel and Segal and Abu El-Haj make it abundantly clear that this is not what they have in mind. Their articles starkly demonstrate why opposition to the occupation from a progressive Israeli perspective cannot be reconciled with opposition to the occupation from the BDS perspective. The first seeks compromise and dialogue in the conflict between two peoples where compromise is a rare commodity; the second makes the realization of Palestinian rights contingent upon the end of the Jewish State. Rofel and Segal and Abu El-Haj have done us a great service. We can now really see what BDS stands for, and what anthropologists are voting for or against in their decision about an academic boycott.
David M. Rosen is Professor of Anthropology and Sociology at Fairleigh Dickinson University.
[ii] “Targeting the Israeli Academy: Will Anthropologists Have the Courage to Just Say ‘No’? ” Huffington Post. March 24, 2016. http://www.huffingtonpost.com/richard-a-shweder/targeting-the-israeli-aca_b_9540974.html
We like to think that drugs help put an end to disease, although in the aggregate this is seldom the case. However many individual infections and infestations might have been cured by timely doses of antibiotics, antifungals, antiparasitics, or antivirals, very few diseases have been eradicated because of biomedical therapeutics. Yaws, a chronic treponemal disease now limited to 14 countries in West Africa and Southeast Asia, is a rare exception of a malady whose displacement has been driven by antibiotics. More often, diseases are controlled by surveillance, prophylaxis, and other preventive measures than by specific treatments. The limited successes of malaria eradication came more from vector control than antimalarials, polio and diphtheria are no longer scourges of childhood in North America and Europe because of widespread vaccination. If early 20th century debates over the management of the HIV/AIDS and MDRTB pandemics have rightly challenged any facile dichotomy between treatment and prevention as public health strategies, the relationship between the two remains an uneasy site of intersection between medicine and public health. More recently, a subtler antagonism between prevention and treatment has become apparent: the paradoxical influence of successful prevention on the availability of efficacious treatments.
Take, for example, the displacement of hookworm from the southern United States, widely remembered as a successful local eradication effort that owed more to the development of sanitation systems and social uplift than the deployment of antiparasitic drugs. While hookworm remains one of the most common nematode infestations of humans worldwide, the website of the US Centers for Disease Control (CDC) discusses the American subtype, Necator americanus, exclusively in the past tense: a parasite which “was widespread in the Southeastern United States until the early 20th century.” Although hookworm was once widespread, the CDC continues, “improvements in living have greatly reduced hookworm infections.”
These “improvements in living” were part of a coordinated regional campaign by the Rockefeller Foundation that would ultimately launch the foundation to the forefront of international public health interventions. When the Rockefeller Sanitary Commission for the Eradication of Hookworm was launched in 1910, roughly 40% of the population of the southern United States was believed to be infested with hookworm. Rockefeller’s “American method” for hookworm eradication involved surveillance, treatment, and prophylaxis: all individuals in an area would be screened, all affected would be treated with cheap and highly effective (if noxious) antihelminthic cocktail, and these demonstrations would be leveraged to build privies and other sanitation systems to prevent recurrence. As historian John Ettling noted, the Foundation leveraged the visible efficacy of antihelminthic drugs to accomplish broader preventive sanitary projects—and as an “entering wedge” to an escalating involvement in disease eradication projects around the world, from hookworm to yellow fever to malaria.
But what happened to the availability of these drugs once the disease had been displaced? Paradoxically, for those who contracted hookworm in the United States in the year 2016, it has become more difficult to find treatment. The vermifuges used by the Rockefeller Foundation in the early 20th century (such as thymol and chennipodium oil, which could have severe side effects) are no longer marketed, having been largely replaced by more specific products of the postwar pharmaceutical industry (such as albendazole and mebendazole). Even though these newer medicines are themselves quite old at this point, and have been off-patent and open to generic competition for decades, they are now quite difficult to find at affordable prices in the United States.
Albendazole was originally introduced in 1971, and by the 1980s its cost was so low and its efficacy so well-established that it was added to the Essential Drugs List of the World Health Organization. Yet when I tried to prescribe the drug to a patient in my Baltimore clinic last year suffering from pinworm (another nematode infestation), I learned that the price tag for 2 pills of albendazole had risen to $330. Partly because the market for the drug was seen to be limited, the U.S. market for albendazole had been cornered by a small pharmaceutical company called Amedra and retrofitted into a newly exclusive brand, Albenza, at more than $150 a pill. The rights to sell the only other drug in its therapeutic class—mebendazole—had also been purchased by Amedra as Teva (the world’s largest generic drug manufacturer) had ceased distributing the drug to American markets. To date, mebendazole remains unavailable to American consumers. In turn, Medicaid spending on albendazole increased from less than $100,000 per year in 2008 to more than $7.5 million in 2013. For people without insurance, however, the medication simply became unavailable.
Albendazole and mebendazole have not attracted any robust generic competition in the United States largely because the antihelminthic market in the US is not perceived to be significant. The same holds true for other antiparasitic drugs. This became widely visible last summer after another small pharmaceutical company, Turing Pharmaceuticals, acquired the sole U.S. distribution rights to pyrimethamine, another antiparasitic drug on the WHO Essential Drugs List, and boosted its price by 5,000 percent. Like albendazole, pyrimethamine was an old, off-patent, and effective antiparasitic agent whose market was considered marginal in an American population now perceived to suffer infrequently from parasitic infestations. And so even though the drug was available for a few cents in parts of the world with greater endemicity, in the US the drug prices were allowed to climb as an effective monopoly on the drug traded hands from Glaxo to Amedra, from Amedra to Turing.
The reduced availability of pyrimethamine has had real consequences in the lives of people with cerebral toxoplasmosis, for decades a condition understood to be manageable with an old drug nobody stopped to think could become inaccessibly expensive. Last fall, a team of my colleagues at Johns Hopkins admitted a patient who had been stable on pyrimethamine for years but who lost the ability to speak after the dormant parasite in her brain reawoke: Turing’s price hike and restricted distribution system left her without access to the medicine. Even once hospitalized, she suffered further adverse effects after Turing and their sole distributor took four and a half days to supply pyrimethamine despite several urgent requests.
Since that time, former CEO of Turing Pharmaceuticals has become a new sort of villain in the passion play of the pharmaceutical industry, part of a new cohort of pharmaceutical executives who employ retro-monopolistic strategies to corner the market on old cheap drugs that no longer attract competition and remake them as old expensive drugs. Their actions bring into question longstanding assumptions that old drugs remain accessible and cheap in the decades after the importance of their innovation wanes from public memory. The increasing unaffordability of off-patent drugs that constitute noncompetitive markets has since taken on increasing urgency among policymakers in the executive and legislative branches of the U.S. government.
There is an unusual paradox at work here: if generic competition is understood as the principal means of making drugs affordable in the early 21st century, then any successful bid to reduce the prevalence of a disease runs the risk of decreasing the competitiveness of that market and therefore the accessibility of treatments for those who remain afflicted. As recent rolling waves of generic drug shortages and recent escalations in generic drug prices should remind us, the market’s invisible hand works until it doesn’t, and then we are left with conditions of market failure when supply doesn’t meet demand. As a given disease—like nematode infestation—is no longer perceived to present a viable market, generic competition dwindles from a robust field to oligopoly to duopoly to monopoly. In some cases, such as mebendazole, the drug simply becomes unavailable.
The historical orientation of biomedicine is overwhelmingly directed towards the future: when we do look back we tend to tell progressive narratives of diseases already vanquished as tokens for future eradication efforts. We focus on the innovations that permitted past public health successes and assume they will stay with us in the future. One of the more eagerly anticipated pieces of health policy in the United States today, 21st Century Cures Act, is entirely focused on fostering the development of new therapeutics—even though events of the past year would suggest that the problem of access to older drugs is just as pressing.
For all of the successes of hookworm control in the early 20th century, the US of the 21st century still contains many people with parasitic infestations who need regular access to affordable antiparasitic drugs. For these individuals, access to potentially life-saving medicines would paradoxically be easier if they were living elsewhere, in a place where preventive efforts had not been as successful, perhaps, but which continued to maintain the affordability and accessibility of 20th century cures. As our health systems continue to imagine promissory cures of the future to address the ills of today, we neglect the disappearance of cures that addressed those diseases we would like to relegate to the past, and we continue to fail those for whom that past has not yet come to an end.
Jeremy A. Greene, M.D., Ph.D., is Professor of Medicine and the History of Medicine, the Elizabeth Treide and A. McGehee Harvey Chair in the History of Medicine, at the Johns Hopkins University. He is the author of Prescribing by Numbers: Drugs and the Definition of Disease (Johns Hopkins, 2009) and (with Elizabeth Siegel Watkins) Prescribed: Writing, Filling, Using, and Abusing the Prescription in Modern America (Johns Hopkins, 2012). His most recent book is Generic: The Unbranding of Modern Medicine (Johns Hopkins, 2014).
In conversations with people living with polio in Hungary, I often encountered members of the tight-knit community referring to themselves as “dinosaurs”. We are a breed that is about to die out, they said. Nobody gets polio anymore, some added, and they were right – epidemics, even sporadic wild polio cases disappeared from the country in the 1960s. Their words stood in stark contrast with celebrities like Jackie Chan, Desmond Tutu and Bill Gates showing on billboards all over the world that with the Global Polio Eradication Initiative we are ‘this close to ending polio’. Yet the urgency of the eradication campaign and the gradual disappearance of a polio generation over a lifetime both signified the same thing: the end of a disease. But what, exactly, is this end and what comes after?
In the following weeks, a series of posts by historians, anthropologists and sociologists will grapple with these questions as they consider epidemic narratives and the ways in which endings bear on global health issues. This series accompanies the interdisciplinary conference After the End of Disease, held on May 25-27 2016 in London. Bringing together practitioners and academics from various disciplines and fields, this event aims to initiate conversations on when and for whom diseases end, what happens when the end fails to come, who gets to determine the end and who gets left behind, how a focus on endings shape health policies and how we can critically rethink the temporalities of epidemics.
Public and academic discussions on the end of diseases have been abundant in the midst of recent epidemic crises. Faltering vaccination rates have seen old diseases, like measles and whooping cough resurface to epidemic proportions in the Global North. Several global epidemic crises, such as the swine flu and Ebola, have prompted international organizations, local governments, pharmaceutical companies, research institutions and individuals to respond in manifold ways with the aim of controlling and eventually ending epidemic diseases – even theoretical ones. Ending diseases for good have been the goal of several eradication campaigns over the 20th century and are the focus of several global projects.
What comes after the end of a disease is more often than not relegated to epilogues and usually comes up as an afterthought to the master narrative. Yet, diseases are often imprinted on the bodies of survivors, societies and cultures. Epidemics may change economic structures, social interaction, shape practices of international intervention and attitudes towards healthcare. In some cases, the proclaimed end of a disease leaves individuals or whole societies and states without resources previously guaranteed by the perceived epidemic threat. In others, the action of looking back after the end creates space for making moral judgements on individuals, societies, governments and international organizations.
The course that the epidemic narrative runs is usually well defined. Charles Rosenberg, in his classic 1989 paper, “What is an epidemic”, stresses the episodic nature of epidemics and lays out a particular dramaturgy of how epidemics take place. “Epidemics start at a moment in time, proceed on a stage limited in space and duration, follow a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift toward closure.” This narrative has been little contested since. Literary scholar Priscilla Wald in a more recent work, Contagious, portrays a similar plotline in what she calls the outbreak narrative, which “in its scientific, journalistic and fictional incarnations… follows a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with its containment.” While Wald’s book takes important steps towards critically assessing the narrative by focusing on its consequences, stakes and cultural, scientific and political significance, how and when these narratives end are not much questioned. The end of the storyline in the case of epidemics and outbreaks, then, is successful containment.
Disability scholars have been at the vanguard of thinking past this narrative. As Catherine Kudlick pointed out in a recent paper on the survivors of smallpox, epidemics have a hidden history interwoven with disability and survival. Because of this, disability history has the potential for transforming how we understand the impact of epidemic disease, not just at the level of individual reactions but also at that of social and political responses. By placing attention on survivors rather than mortality, Kudlick argues, we can re-imagine epidemic scripts.
Scholars of global health, along with policy makers have a lot to benefit from these perspectives and can take the opportunity to broaden the scope of their study and action. By placing the ‘after’ into the centre of analysis, we can gain a more nuanced understanding of what epidemics are, the how we might study them and who and what gets left out of the master narrative of beginning, crisis and end. This shift of focus also highlights the narrative’s shortcomings and the stakes at hand as epidemic narratives shape global and local health policies.
Eradication is the ultimate ‘end’ to a disease, but the epidemic narrative is very much present in many other health issues, from obesity through cancer. And the dramaturgy of increasing tension, crisis and closure is seductive, especially regarding the end. We all yearn for a happy ending, or at least an ending of some sorts, when it comes to diseases that challenge our faith in medical knowledge, our political systems and rip the social fabric. Hardly anyone would contest that eradicating smallpox was a good idea, or argue that we’d rather have polio epidemics back. Furthermore, the narrative can be constructive in other ways. Epidemics and diseases more generally leave behind not just survivors, but public health practices and structures – not everything is always forgotten or works in exclusionary ways. Clear endings can give way to new beginnings.
At the same time, epidemic narratives can be as deceptive as seductive. The end of disease, may it be a goal, a wish, or a thing of the past, is often perceived in a particular and narrow sense. Endings often imply progress of some kind, while the stories of survivors overwrite the ones of failure, of anonymous loss. But endings are often messier than any international, national or local governing body would care to admit, and most diseases do not map onto neat narratives. Endings hardly mean that the story is finished. The contributions to this series look further to follow the story and investigate the very real stakes of theoretical musings on temporalities and endings and the consequences of such narratives in global health.
Dora Vargha is postdoctoral research fellow at Birkbeck College, University of London, participating in a research project led by Jessica Reinisch titled The Reluctant Internationalists. Her work investigates global health history and epidemic management from an Eastern European perspective.
In this short case, I will try to convince you of the importance of earthworms in thinking about politics.
If this sounds like an argument, that is because it is. I first organized the materials in this essay to make a case. They were part of a public thesis ‘defense’ that took place in the small country of the Netherlands, a place where, at the culmination of a degree, a researcher will stand before a committee of fully-gowned academics who weigh the evidence presented and, in courtly fashion, bestow an official verdict. This forum, metonymic of much of Euro-American politics, presents truth in terms of a binary relation. There are rights and there are wrongs. Which is why it is important to say at the outset that even as I make an argument, spending time with worms and the scientists who work with them unsettles argumentative politics. What you will see is that the purpose of making a case may not be to be right, but to offer resources that we can use to metabolize and live with the world in alternative ways. Though I make an argument, I do not necessarily want you to agree. This is something I have learned by watching scientists who are watching earthworms. They have helped me to see how we might rework politics as usual, away from dreams of agreement and closer to the dirty and messy ongoings of compost.
Living together has been the focus of Euro-American political theory: from its mythical Greek origins so-called modern society was constructed on the idea that politics is a way to organize social life. Accordingly, the state of nature is violence and war, but political structures and institutions bring order to mankind through a social contract, which stipulates an agreement between members of the society. Politics serves to regulate what is legitimate violence and what forms of violence are in breach of the social contract.
Anthropology has complicated this view: going elsewhere, some Euro-American anthropologists pointed out that people in different places do different politics. What living together is about in places other than Euro-American ones messes with Euro-American categories. Social organization is not just about agreement and rational discussions, but is equally informed by other systems of meanings and different ideas about the world and the cosmos.
In a second and related maneuver, Euro-American anthropologists looked not outward but inward. In doing so, they helped in the task of ‘provincializing Europe’: showing that what is often clumped together as ‘the West’ is not one thing. Even in the most familiar places politics are already done in many – often surprising – ways.
Challenging this most recognized Euro-American way of doing politics is especially important today, as the limits of established Western democracies become more apparent— their violence morphing into novel neoliberal forms, spreading to engulf the planet and its ecological and geological entanglements. If we have managed to turn a blind eye to the structural injustices and inequalities of the political systems we live within until now, these have spread too far and are coming back at us, albeit unequally but nonetheless with a vengeance, through planetary forces. As the sea rises to flood ever vaster swaths of land, ecological disruption easily overcomes conceptual boundaries and categorical barricades erected by the West.
The political as manufactured in and traded by Euro-America relied on agreement (and war upon those who disagreed). But this politics of agreement has structurally excluded nature from its equations. That realm was imagined as categorically separate from politics, ruled by its own ‘natural’ laws. Defining this was not a political task, but a scientific enterprise. Even anthropologists have struggled to overcome this dualism: when encountering ways of doing politics other than their own, mostly they have remained limited by Euro-American understandings of the human, pinned down onto one unitary world, with one true nature, and supposedly still disconnected from politics. It is to remedy the effects of such an expunction of the natural from the political that many scholars in the social sciences have begun to reconsider what nature is and what a politics of nature could be.
It is in this context that worms can be of help. They have certainly not been the object of political theory or anthropology before. And yet they have held a crucial role in the natural sciences, and in particular, in ecological thinking. To see this, it is enough to remember that Darwin himself dedicated over 40 years of his life to the study of these invertebrates.
Darwin published the results of these studies in 1881, in his last monograph, The formation of vegetable mould through the action of worms. There, he unraveled, with his usual meticulous attention, the crucial role of earthworms in all sorts of vital processes in soils. Not surprisingly, he was widely ridiculed by the media of the time for his efforts in introducing what detractors called ‘the political worm’. Certainly the old man must have been crazy if he thought that worms were social beings.
And yet, since Darwin’s time the centrality of earthworms to ecology has only been reinforced: worms’ actions create the structure of our soils and the conditions necessary for soil fertility and plant life. Biologist Scott Turner, in his book The extended organism, went as far as to show how the evolution of a soil layer that successfully drains and irrigates the landmasses on Earth depends on worms’ physiology: their original adaptation to life in water worked poorly as they ventured on land, and forced them to modify their environment to support their ill-adapted organs.
The centrality of worms to ecology also rests on their eating of organic matter. Eating, though, has been often marginalized by a philosophy obsessed with freedom, heroism, and thought (the marginalization often proceeds along the same fault line that splits nature from politics). In my work with ecologists, however, eating was not marginalized, but instead featured as a keystone in the theories that my informants used. Over the last two centuries, ecologists developed a theoretical language as well as practical measuring apparatuses to deal with a world in which life everywhere is engaged in eating and being eaten. They started with early simplifications of a predator-prey world, but their models have become complex, today encompassing trophic systems and nets – and depending on growing computational power.
Scientific descriptions and measures like those found in ecology textbooks offer important ways to imagine the world. But they focus on defining what nature is, true to the conceptual division of labor between politics and natural sciences. This is where my work separated from that of ecologists: I, too, was interested in worms. But, unlike the scientists I worked with, I was not interested in measuring and quantifying earthworms and their activities, but in how earthworms can challenge the way we do politics. I wanted to learn from them about how they are already engaged in politics otherwise, living together with scientists, and a host of incommensurable and radical others.
By attending to earthworms as they chewed up rocks and defecated fertile soils I became less concerned with securing definitions about nature and more interested in the diversity of practices of living together that I encountered. The practices of living together I focused on were those that brought earthworms together with ecologists, naturalists, taxonomers, soil scientists, and ecotoxicologists. And as I followed their work, I learned that as much as their profession compels them to define nature, to do so they are always-already living together with worms: they engage in earthworm togetherness, as it were. But the kind of politics I began to see there, proved to not be exclusive to the ecologist’s scientific practices. So, I also took on vermicomposting – the recycling of food waste with worms to make compost – myself. Like the worms in labs and collections, the worms in my bin taught me about living together, and they did so through eating and its metabolic relations.
By engaging in the quotidian, practical activities of composting I learned that to turn food waste into soil agreement is not necessary. Composting is not really about rational choices and democratic consensus. Sure, you can see choice if you want: do I build my own bin, or do I buy one? Do I feed the worms egg shells, or do I put newspaper shreds? But as much as these decisions can be framed as rational and are clearly important to its success, composting is not made by them. Instead, it is the eating, decomposing, composting and rotting that goes on in the bin that runs the togetherness of compost.
Crucially, this togetherness is not about forming consensus around a common good, but about the coexistence of many different worlds that are not merely in agreement but hold together and come apart in differently relational ways. What is relevant in the compost bin is not just one kind of eating, but the complex mixture of microbial activities that go on inside the guts of the worms, how these change the molecular structures of compounds that are found in the bin, and how these are then taken up by plant roots, or other organisms, and so on. This pushes us to attend to the many different ways in which we can come to know and to partake in practices of eating and being eaten.
The living together of worms can serve as a reminder to Euro-American social scientists that there are no guidelines out there on how to live together well. Instead, politics, when understood as living together, calls for makeshift arrangements that are both radical and specific, as well as for experimenting with alternatives. If composting might work through certain standard passages, composting guides never give any final word, but rather suggest some possible alternatives to tinker with.
The kind of politics that attending to earthworm lives makes apparent, then, is not one in which a common good is sought or achieved, but rather an asymmetric one that remains, notwithstanding the asymmetries, reciprocal and relational. This is a politics that does not resolve in a common, but in togetherness. This politics is in tension with what Bruno Latour, the famous French philosopher and anthropologist of science, claims when he argues that we should “redefine politics as the progressive composition of the good common world” (Latour 2004). The path Latour lays out for us is, today, an increasingly widespread path to approaching nature. Academics and politicians alike are telling us that to combat unwanted, uncontrollable global forces we should include nature into of our political system. It is through this integration that we can face climate change and all sorts of environmental transformations.
But the variegated and asymmetrical ‘living togethers’ that earthworms participate in is not contingent upon this kind of agreement. Central to the togetherness of earthworms are differences, which are not something to be brushed away or to be made to be similar, but rather something to be appreciated, and attended to. A brief example from one of my sites will help make this point clearer.
One of the scientists I worked with was interested in studying earthworms’ impact on greenhouse gases. In her work she showed how earthworms contribute to emissions by helping organic matter to decay, a phenomenon she called global worming (eg. Lubbers et al. 2012). But, while her work consisted in quantifying emissions, and searching for statistically convincing data that could help bring this effect to the attention of the climate change science-policy community, it did not stop there. Instead, she worked to describe the minute contingencies of the processes involved: certain functional groups of worms are more important than others, some climates and farming practices are more prone to stimulate the negative impact of worms than others, seasonal dynamics will transform the role of earthworms in some soils, specific details of standards in fertilizer use, farming, and dealing with crops and land management will also have different impacts, and so on.
These details are the differences that are crucial to the togetherness earthworms can teach us, and that, I argue, we need to learn to appreciate – a challenge in a time so focused on finding out generalities rather than specificities. This appreciation of differences, again, is something for which there are no guidelines. Studying more won’t tell us how to better do this– how to better stay with the differences. It will probably help us in understanding different aspects in other novel ways, but it won’t tell us how things ‘really’ should be. For how things should be is something that doesn’t happen once and for all but must be continually experimented and tinkered with. Over and over again.
A science-fiction reference does well in concluding this argument: “The worm is the spice, the spice is the worm”; a quote from Dune, a 1984 adaptation for the silver screen of Frank Herbert’s 1965 novel. In the world in which the movie takes place, giant sandworms on the planet Arrakis are involved in the biogeoecology of the spice mélange, which is exclusively mined there. Control of the spice means control of the universe, since the spice is essential to space travel. The ecological understanding of interconnectedness that dovetails this quote – and its whole fictional universe – is the kind of togetherness I suggest. This is a togetherness that is not constrained by the limits of closed systems and of the categories that Euro-Americans commonly use to think about the world. It is instead a togetherness enlarged by the imaginative openings that worms, like anthropology, can offer us.
Latour, Bruno. 2004. Politics of nature: how to bring the sciences into democracy. Harvard University Press.
Lubbers I.M., K.J. Van Groenigen, S.J. Fonte, J. Six, L. Brussaard and J.W. Van Groenigen. 2012. Greenhouse gas emissions from soils increased by earthworms. Nature Climate Change.
Filippo Bertoni is a postdoctoral fellow in the Aarhus University Research on the Anthropocene, an interdisciplinary and experimental project led by Anna Tsing and Nils Bubandt focusing on disturbed landscapes and “the arts of living in a damaged planet.” His current work explores the mining area of Río Tinto and the activities of a team of astrobiologists who study its underground microbial ecosystems as analogs for Mars. Filippo’s interest in how landscape is metabolized builds on his doctoral research where he worked with Annemarie Mol’s research team to learn about “The Eating Body in Western Theory and Practice.” Papers he has published as part of this project can be found here.
Creative Collaborations: The Making of “Lissa (Still Time): a graphic medical ethnography of friendship, loss, and revolution” by Sherine Hamdy
Is there a widely accessible yet conceptually rigorous way to convey anthropological insights into the lived complexities and bioethical dilemmas that attend managing chronic illness in two vastly different contexts: the contemporary Arab world, and the United States? As it turns out, there is: comics. At the time we began to explore this question, we had both been excited by the pedagogical potentials of this genre in our medical anthropological teaching (Hamdy 2014, Nye 2015). Like other scholars working in the growing field of what Ian Williams has termed “graphic medicine,” we found that the combination of text and image in graphic memoirs such as Hyperbole and a Half or Mom’s Cancer can powerfully convey the visceral, temporal, and social dimensions of illness, while the levity of the genre makes it easier to engage with difficult topics such as suicidal depression or cancer. We began to consider that the graphic form might also make it possible to succinctly and effectively visualize medical anthropological concepts such as “structural violence,” “biotechnical embrace,” or “political etiologies.”
Motivated by the conceptual and pedagogical potentials of comics, we began the process of crafting a collaborative narrative-based graphic adaptation of our original field research (process illustrated here by Hamdy’s daughter in fig. 1). This has led to a richly collaborative multi-dimensional project developed with the guidance of award-winning cartoonist and editor Paul Karasik and illustrated by Rhode Island School of Design students Sarula Bao and Caroline Brewer. We are thrilled to announce that the resulting project, Lissa (Still Time): a graphic medical ethnography of friendship, loss, and revolution, is now forthcoming with University of Toronto Press’s ethnoGRAPHIC series edited by Anne Brackenbury. The print book will also be supplemented by an interactive digital platform that explores more deeply the conceptual themes of the book, as well as a documentary film by Francesco Dragone that captures the process of creating Lissa, including a research trip to Egypt (funded by the Henry Luce Foundation).
Set in Cairo, the project is informed by Sherine Hamdy’s work in the field of Islamic bioethics – specifically, her ethnographic research in Egypt on the vulnerabilities that expose people to kidney and liver disease, and the difficulties of accessing proper treatment. The work also draws on Coleman Nye’s research in the U.S. on the social and political calculus of managing genetic risk for breast and ovarian cancer within a commercial healthcare system. This graphic work of “ethnofiction” (Stoller 1992) tells the story of an unlikely friendship between Anna (fig. 2 or 3), the daughter of American expats living in Cairo with a family history of breast cancer, and Layla (figure 4), the daughter of the doorman/servant of Anna’s apartment building, who grows to become a resolute physician struggling for better public health justice and rights in Egypt based on (based on work by Hamdy and Soha Bayoumi). Following the women as they grow up together and grapple with difficult medical decisions, our project explores how different people come to terms with illness and mortality against the backdrop of political, economic, and environmental crises. Ultimately this form of engaged scholarship transforms the ethnographic encounter into a more accessible, readable and visually effective medium that invites readers to draw their own conclusions about how the material relates to their lives.
But what exactly does this collaborative ethno-graphic endeavor look like in practice? How did this team of artists and ethnographers develop our characters, craft the story, and create the drawings? What representational choices did we make and why? This project has been an ongoing exercise in co-creation from building a story that bridges our research sites to translating it into the visual language of comics. While there is much to be said about this, we will briefly touch on a few of the decisions that arose in our work including the use of ethnofiction, the work of visual storytelling, and questions of knowledge production and authorship.
Hamdy’s project on kidney disease in Egypt and Nye’s on breast cancer genetics in the U.S. started out separately; neither was comparative nor collaborative. For the graphic novel, we created fictional characters to make these worlds intersect, crafting an absorbing character-driven narrative that allowed us to more fully examine the affinities and tensions between them. Layla and Anna, while fictional, are also in a sense composite characters, each based on scores of interviews and research that allowed us to make more explicit choices in conveying anthropological theory through dialogue and plot. Fictionalization also gave us the flexibility to constantly adapt the narrative in conversation with the artists and informants. As the artists began to draw, we would discuss how to make the narrative more visually compelling or concise based on their input and our own responses to the illustrations. For example, there was a moment when we chose to take out a violent scene because we found it too disturbing when faced with its visual representation. The narrative changed shape again as we spent time in Egypt meeting with doctors who provided care to wounded protestors in Tahrir Square. Their feedback and guidance helped us to adapt scenes in the story to more accurately portray their lived experiences.
One of the most generative aspects of the process has been realizing how much more we can convey through the combination of text and image. For example, the concept of political etiologies that took Hamdy roughly 30 pages to describe in an academic article (2008) can be graphically illustrated in a one page spread. We communicate this visually and associatively through an image of an Egyptian patient’s body linked to a dialysis machine, its tubes snaking outward spatially and temporally, connecting the patient’s sick body to the parasite-transmitting snails of the Nile, the Camp David Egypt-Israel Peace Agreement of 1979, the overproduction of U.S. Midwestern wheat upon which the Egyptian population now depends for food, chemical fertilizers, pesticides, failing infrastructure, and the black market in counterfeit medical drugs and equipment. Following connections across scales and times is more fluid in graphic form, facilitating our work between two contrasting global contexts to expose a range of interconnected issues in health, politics, and justice.
While the comics project has facilitated a range of collaborative, adaptive, and pedagogical functions, we also sacrificed some of the fine-grained ethnographic complexity of our sites and analyses. Not everything could make it into the final book project, and we do not ultimately portray the full range of perspectives that people make when facing medical decisions like those of our characters.
In an effort to recuperate some of the fuller complexity of our research and analysis, we are developing a digital platform. We envision the accompanying digital publication as a way to explode the standard linear reading of the narrative and to allow users to follow multiple paths of inquiry. We also seek to expose the very making of scholarship and the processes of knowledge production. This project has involved the translation of different forms of knowledge across genres, languages, contexts, and individual perspectives.
Of particular interest to us is the ethics of representation, due in part to the recent trend of academic tourism around the Arab Spring that has tended to overshadow the intellectual production emerging from the revolutionaries themselves and those most immediately affected by the political uprisings. It has been important to us to highlight the tremendous artistic, academic, and activist work that Egyptians themselves were doing in the very acts of fighting off riot police, improvisationally healing the wounded, navigating censorship, and presenting competing counter-narratives to state propaganda.
In recognition of our debt to these critical thinkers, their work appears on our digital site and in our documentary film. For example, we highlight the work of Egyptian graffiti artists who were already using illustrations in sophisticated and stunning ways to level trenchant political critiques. We also incorporate some revolutionaries as characters in the graphic narrative itself; for example Dr. Amr Shebaita, co-founder of Tahrir Doctors, Dr. Dina Shokry, and several women from the Women and Memory Forum archive are depicted in the graphic narrative interacting with our fictional characters.
The digital platform will enable us to highlight voices of the various contributors to this project, including the interlocutors upon which the narrative is based, the artists, technologists, researchers, animators, and filmmakers. At each point of intervention, we invite the reader to challenge the assumptions of authorship and scholarly authority.
Hamdy, Sherine. 2014. “Top of the Heap: ‘Graphic Medicine.’” Somatosphere, March 26.
Hamdy, Sherine. 2008. “When the State and Your Kidneys Fail: Political Etiologies in an Egyptian Dialysis Ward.” American Ethnologist 35(4): 553-569.
Nye, Coleman. 2015. “Teaching Comics in a Medical Anthropology and Humanities Classroom.” Teaching Culture, March 16.
Stoller, Paul. 1992. The Cinematic Griot: The Ethnography of Jean Rouch. Chicago: University of Chicago Press.
Autism Spectrum Disorders in Global, Local and Personal Perspective: a conference report by Elizabeth Fein
Last September, a group of scholars gathered at the State University of Rio de Janeiro for “Autism Spectrum Disorders in Global, Local and Personal Perspective: A Cross-Cultural Workshop”. The event was organized by Clarice Rios, a postdoctoral fellow at the State University of Rio de Janeiro, and Elizabeth Fein, a professor of psychology at Duquesne University, and funded by the Lemelson/Society for Psychological Anthropology Conference Fund, made possible by a generous donation from the Robert Lemelson foundation. Aiming to destabilize the centrality of approaches from the global North in discussions of global mental health, the workshop sought to integrate North American psychological anthropology with the South American field of Collective Health, a field characterized by attention to the social production and reproduction of disease and health.
The workshop brought together a diverse group of scholars from northern and southern hemispheres. Participants varied in their main disciplinary affiliations: cultural and psychological anthropology; psychoanalytic psychiatry and phenomenology; philosophy; ethnomusicology; primatology; developmental psychology and linguistics; and disability studies, to name just a few. Some participants were on the autism spectrum, some were not; some had family members with autism spectrum conditions, some did not. But all of us shared a commitment to considering autism in social and relational context, across its experiential, intersubjective, and sociopolitical dimensions.
Here, we will briefly describe the many events and lively discussions that took place at this workshop. For those who want to find out more, video recordings of many of these events are also available on the Vimeo channel of the Society for Psychological Anthropology.
Day 1: Introductory Remarks
On Friday evening, Benilton Bazerra and Kenneth Camargo opened the event with an introduction to Collective Health and a history of Brazilian psychiatric reform. Tom Weisner followed with an introduction to psychological anthropology and its contribution to the study of disability. The discussion that followed explored the similarities and differences between the history of psychiatric reform and de-institutionalization in Brazil, the United States, and Italy (where several workshop participants had lived or worked), particularly focusing on the role played by developments in psychoanalytic and psychopharmacological technique in each of these countries.
Day 2: – Workshop Presentations
Our first day of workshop presentations began with Elizabeth Fein’s presentation, titled “What Do I Study When I Study Autism?” Drawing on multiple ethnographic and meaning-centered studies of Asperger’s Syndrome and related autism spectrum conditions in the United States, Fein’s presentation invited us to reconsider autistic cognitive styles “as modes of engagement characterized by a deep involvement with external systems of organization – systems which are by their nature limited and limiting”. Picking up on the theme of autism as a way of knowing about the environment, discussant Dawn Prince described how the devastating sensory impingement that results from her profound sensitivity to the world around her can also function as a warning signal about increasingly uninhabitable human environments. Though she was speaking from her own experience as a person on the autism spectrum, she observed that the search for order and repetition is central to academia as well as autism. “We all find ways to cling to the patterns we’re used to: we hold on to methodology, field of study, professorship” when we find ourselves in situations that are unexpected or overwhelming. Certainly this was true for all of us present, on some level or other, and her comments echoed in our ears as we attended to our own patterns of orientation and disorientation throughout the rest of event. (Video)
Continuing the theme of departure from, and connection to, familiar disciplinary spaces, Clarice Rios was next, with “Doing Ethnographic Research Outside Anthropology: An Ethnography of Autism in the Context of Collective Health”. Rios described Collective Health as “a project for a radical political reconfiguration of the concept of health” that “conceives health and disease phenomena as part of broader social and political processes that reflect and reproduce deeply entrenched social inequalities”. She shared a series of lessons from her work doing anthropologically informed ethnographic research in Brazil within this framework, concluding that ideally, this ethnography should attend to what is at stake for the people involved without losing track of larger political issues. Her presentation also focused on how she decided to focus on the intersections of lay and professional expertise as her research object. Discussant Tom Weisner picked up on this theme, inviting us to consider the ways in which many so-called “experts” mirror what their audiences expect to hear. What of our responsibility to our own expertise as academics? Weisner introduced the concept of a committed, fair witness to conceptualize the opportunity and ethical responsibility held by researchers. (Video)
Jurandir Freire Costa spoke next, describing some of the work that he and his colleagues in a weekly seminar have been doing analyzing first-person narratives of autism. Costa and his colleagues prioritize phenomenology, developmental psychology and philosophy of mind over DSM-style descriptive psychiatry to articulate an understanding of cognition as “the ability to justify the way we know things”. Looking at accounts from autistic authors such as Tito Mukhopadhyay and Sean Barron, Costa argued that their ability to justify their way of knowing things attests to their rationality. Discussant Richard Grinker connected this approach with the classic anthropological studies by Evans-Pritchard on witchcraft, and the various critiques posed toward that work and its epistemological stances, centered around these same questions: how do we understand and accommodate worlds very different from our own? The group discussion focused on these issues of intelligibility and incommensurability. (Video)
Pamela Block’s presentation described the intellectual lineage and evolution of her work on social movements, autism and disability: from her work on cognitive disability in Brazil to her current project, “Occupying Disability”, and her evolving autoethnographic work with her sister, Hope, who is autistic and co-authors with her through facilitated communication. Her presentation highlighted significant themes in the cross-cultural study of disability: the ways disabilities get grouped together or kept separate in various social movements and bureaucratic infrastructures; the relationship between actual social change and the symbolic representation of social change; the impact of austerity and structural inequality on the lived experience of autism. As discussant, Rossano Lima directed our attention to the parallels and differences between the politics of disability advocacy in the United States and Brazil, where the word for disability translates most closely to “deficiency” and has thus been more difficult to re-appropriate as the center of an empowering social movement. (Video)
Historian of science Enrico Valtelina’s presentation wove together his “personal journey into the autism spectrum” with a discussion of the geneology of autism. In particular, he asked how we can conceptualize autism prior to Kanner’s foundational work in the 1940’s, suggesting the term “relational disability” to describe “nonconformity to expectations of the other in face-to-face interactions”. Valtelina discussed his own experience of “interpellation” by Asperger’s Syndrome and discourses of neurodiversity, and the ways this experience has been complicated by examining such “cultural objects” in their historical context. Francisco Ortega’s challenging discussant remarks kicked off a lively discussion about the power and consequence of labels such as neurodiversity, autism, and Asperger’s. If we broaden the word “autism” to include all sorts of quirky malcontents, as Valtelina’s work at times seems to do, won’t it lose its analytic power? Doesn’t the term “neurodiversity” excessively foreground an essentialized biological difference? And, as Tom Weisner provocatively suggested, why are we so focused on all these shifts in terminology, anyway – why aren’t we focusing our efforts instead on the common suffering of autistic people and their families, some of which difficulties seem to be shared across cultures and throughout history? (Video)
Dawn Prince closed out our first day by weaving together many of the themes that had begun to emerge throughout the event into her narrative of her own struggle as an autistic person to make herself intelligible. A primatologist who feels a close sense of kinship with both nonhuman and human primates, Prince shared a series of vignettes about her interactions with gorillas, academics, and other structured social groups. Discussant Ariel Cascio asked her about a previous piece of writing in which she had announced her intention to stop writing about autism in an academic idiom. What followed were some passionate critiques and equally passionate defenses of the representational and analytic processes of “making things up” that characterize both academics and humanity at large – sometimes to our betterment, sometimes to the detriment of other things that matter. Prince highlighted in particular the importance of staying connected to direct, embodied experience of the natural world as we struggle to evaluate conflicting truth claims. (Video)
Day 3: Workshop Presentations
Sunday morning, Barbara Costa Andrada gave an account of the “autism controversy” that has been raging in Brazil. Costa Andrada and her research team, led by Clarice Rios and also including Clara Feldman, have been mapping the consequences of a major political shift around autism classification and treatment in Brazil. Once considered a form of “mental suffering” best treated within a public health system heavily influenced by psychoanalysis, autism is now being reclassified as a disability (deficiência). A vocal group of parents advocate for autism-specific specialized services that teach specific behaviors; the post-reform public health care system in Brazil is oriented more toward recognizing and addressing broader forms of shared psychosocial distress. Many children are now receiving services within both systems, with each system unaware of what the other is doing. Discussant Pamela Block highlighted the exciting research potential of such a historic moment, encouraging the team to further investigate how children and families respond differently to these different services. Laura Sterponi pointed out ethnographers may here have a responsibility to move from an emic to an etic stance, in order to recognize and critique the “ideological erasure” that occurs when these different systems look right past each other, unseeing and seemingly unaware of each other’s work.
Ethnomusicologist Michael Bakan’s presentation was titled “Music and Autism: Representation and Re-Presentation in Anthropological Perspective”. After giving some background on his work in an improvisational music ensemble featuring both autistic and non-autistic musicians, Bakan chose to devote the majority of his presentation time to “re-presenting” (rather than analyzing and “representing”) the words of autistic musician and former professor Gordon Peterson [a pseudonym]. Peterson eloquently describes his struggles with an inner life that is beautiful and generative, but difficult to share with others. Discussant Laura Sterponi compared Bakan’s “performance” of silence within his own presentation to the radical paradigm shift in notions of authorship that John Cage suggested with his “silent piece” 4’33”. (As it turned out, Bakan has also worked with Cage!) As we discussed the figure of the composer whose deliberate act of self-silencing foregrounds the previously disregarded and unheard, Elizabeth Fein suggested that we not forget “the authorial power we have when we select whose voices to re-present”. The “neurodiversity paradigm” plays a powerful role in Bakan’s work; some discussion continued to interrogate that term and its uses. (Video)
Ariel Cascio’s talk “Autism as a Way of Being in the Narratives of Parents, Professionals and Youth with Autism” presented ethnographic data from their research in autism-specific settings in Northern Italy. In their presentation, Cascio focused on how people diagnosed with autism spectrum conditions, parents, and professionals use a particular way of understanding autism – “as a way of being” – to make sense of their experience. In the process, they also shared some cogent observations about “social” and “medical” models of disability, a distinction less frequently drawn in the Italian context than it is in the US and Britain. Discussant Enrico Valtelina observed that the “avante garde” of political struggle in Italy to radically overhaul education and treatment for people with disabilities was largely led by professionals; he drew a contrast to the United States, where people with disabilities led a political struggle that often brought them into conflict with professional “experts”. These different histories have led to different sets of tensions in the present day. In Italy, use of the term neurodiversity – and appreciation for the phenomenon it describes – seems to co-exist more comfortably with talk of treatment and even cure. As Jurandir Costa and Benilton Bezerra suggested, a different question can be raised from the Brazilian perspective, where psychoanalysis (less interrupted by the emphasis on mother-blaming that caused it to fall out of favor in the US) is still central to autism treatment: why don’t we talk about psychodiversity?
Laura Sterponi’s presentation “invited us to reappraise echolalia with a sensibility toward the experiential affordances that language yields”. Sterponi brings methods from Conversation Analysis and linguistic anthropology to her close analysis of videotaped, spontaneous interactions of children with autism and their family members in their homes, as they engage in everyday tasks like drawing pictures and fighting over finishing vegetables. Rather than depicting echolalia and other language phenomena typically associated with autism as purposeless speech or as markers of individual impairment, Sterponi sees them in their interactional contexts as agentic acts, in which a child is pursuing or resisting particular courses of action. As discussant, Rossano Lima invoked phenomenological theory to explore different kinds of embodiment and meaning making. In the discussion that followed, participants explored different ways of engaging “worlds filled with worlds”, allowing for ways of relating that are preconceptual, and prereflexive, engaging language in ways not necessarily symbolic. (Video)
Richard Grinker provided a suitably provocative finish to the workshop talks with his talk “Who Owns Autism?” Autism, he observed, is inextricably bound up in a complex web of financial and economic interests, across multiple levels of governance, which he referred to as the “autism-industrial complex”. Discussant Michael Bakan grappled with the troubling implications of this paper, and the “paradoxical quagmires” it creates for us as scholars – what kinds of research can best elucidate, rather than perpetuate, such a complex? And what about our informants and research collaborators, many of whom make active use of autistic diagnostic labels and the experiences those labels facilitate. Are we, and they, thus “inescapably complicit?” In the discussion that followed, we generated ideas for addressing these questions, and shared our own experiences wrestling with the ethical stakes of research and practice that aims to be both critical and constructive. (Video)
At the end of each day, we spent an hour or so identifying and discussing themes shared across presentations, so that these themes could guide the organization of our edited volume.
Day 4: Outreach
Monday was devoted to forging connections with the broader clinical and scholarly community of Rio de Janeiro.
Monday morning we held a public meeting attended by about 150 educators, clinicians, parents and activists. Assisted by live translation via headset, the nine visiting scholars briefly presented our work – including some experiential music and movement exercises from Michael Bakan and Dawn Prince. We then took questions from the audience; the wide variety of topics ranged from how to deal with aggressive behavior to how people affected by autism in the US and Brazil can continue to learn from each other. We were joined for lunch by graduate students from Rio de Janeiro and surrounding cities, seeking mentorship and consultation on their ethnographic research projects. After lunch, we spent the last few hours of our time together planning the publication that will arise from the workshop, an edited volume featuring a number of co-authored collaborative pieces, which we aim to publish in both English and Portuguese. (Video)
In addition to these scholarly activities, we also had the opportunity to immerse ourselves in the sights and sounds and smells and tastes of Rio – dancing together at sambas, drinking caipirinhas while listening to a live choro band, sitting among giant, tangling tree-roots in the Botanic Gardens, and wandering together with our knowledgeable guides through rain-swept city streets at night. On the last day, a few of us traveled to Nise da Silveira’s Museu de Imagens do Inconsciente (Museum of Images of the Unconscious). A central figure in Brazilian psychiatric reform, da Silveira is known and loved for refusing to administer the crude biological interventions then in vogue for psychiatric illness – primitive electroshock, lobotomy – instead developing an expressive arts program that gave voice to some of the most marginalized people of her society, as well as giving a start to many successful artists. We explored the many floors of the Hotel da Loucura, where psychiatrist Vitor Pordeus carries on da Silveira’s mission of healing through theater and art. As we ascended the painted stairwells, marveling at the images that covered every wall, we were once again reminded of the power of images to express what words cannot capture, and the power of embodied experiences and physical journeys to transform the lived world.
Robert Michael Brain’s “The Pulse of Modernism: Physiological Aesthetics in Fin-de-Siècle Europe” by Ashley Bowen-Murphy
University of Washington Press, 2016, 384 pages
Given the growing divide between STEM and the arts (despite the somewhat anemic push to embrace the STEAM – STEM plus art – acronym/approach), Robert Brain’s ambitious new book, The Pulse of Modernism, reminds us that the line between art and science has always been thin. Brain’s findings demonstrate that the ways of knowing that characterize the sciences may influence art but that artists take up these ideas and adapt them for their own social, intellectual, political, and economic purposes.
Robert Brain’s The Pulse of Modernism: Physiological Aesthetics in Fin-de-Siècle Europe deftly argues that experimental systems (e.g. instruments, techniques, and processes) mediated the relationship between art and the lab far more than scientific writing (e.g. journal articles and monographs). Brain emphasizes that “physiological aesthetics” represented more than just the “extension of physiology to a new domain of human function… art.” The artists at the core of this study did not uncritically take tools or techniques from the laboratory. Instead, they used the insights and techniques of physiology to rethink form, rhythm, and abstraction in addition to thinking in new ways about perception, empathy, and the entire “human sensorium.” In this account, modernism emerged from new ways of thinking about the body and human senses.
Brain locates his book at the intersection of a broad spectrum of disciplines including art history, literature, science studies, the cultural history of science, and medical history. Although he does not follow Bruno Latour’s methods explicitly, the anthropologist and theorist’s influence is clear throughout the book—to the point that Brain defines his own work as an “historical sociology of translation” (xviii). Insights derived from Michel Foucault and Henri Bergson also shape Brain’s thinking about duration, temporality, and disciplinarity. However, the theoretical discussions of laboratory work or aesthetic experience neither distract from nor obscure Brain’s larger objectives.
At first, the book’s organization appears to reaffirm the science-art divide. The three chapters that make up part I, “Experimentalizing [sic] Life,” outline the development of graphical measuring and recording devices. Brain identifies the late nineteenth century physiologist and scientist’s rush to create graphic representations of their findings as an essential factor in the shift toward disciplinary thinking. These graphic representations of various findings became both a method of science and an entire imaginary that shaped a generation’s approach to scientific knowledge. After an exploration of the ontology and epistemology of graphic representations of natural processes, Brain turns to a detailed discussion of instruments that recorded physiological processes over time: the myograph (measuring force produced by muscle), sphygmograph (blood pressure measuring device), and others. These machines created complicated lines and curves that corresponded to, or promised to correspond to, a mathematical function. This function conferred legitimacy and objectivity to this particular way of understanding the world.
Brain then pivots to a discussion of the rise of the theory of protoplasm as a “prime case of turning an ‘epistemic thing’… into a feature of the natural world itself.” Protoplasm, the “nitrogenous, semifluid, elastic substance that could be found in the cells of all organisms,” provided scientists and artists with a way to explore heredity, the nature and limits of life, and the body’s own recording medium (37). By blending the science of energy and life, researchers who worked on protoplasm posited that protoplasm recorded and transmitted the body’s sensations or impulses over time. Work on protoplasm allowed scientists interested in evolution to begin to think about duration as an important factor in evolution.
The book then moves away from measuring traces of biological life in the pulse or protoplasm to measuring traces of cultural life by recording speech as physical act. Brain explains that late nineteenth-century French linguists embraced the laboratory as a key site in the development of experimental phonetics. With the help of various tools and recording devices, scholars began to study language as a physical act that combined movement, vibrations, breathing, and more. These instruments recorded language not as written signs but as lines and curves. In Brain’s account, these insights contributed “a new kind of human science” that located a social bond in the linked vibrations of human speech and the human body (or protoplasm).
The four chapters that make up part II, “Experimentalizing [sic] Art,” examine the ways in which visual, literary, and performing artists adopted insights from the laboratory into their work. Charles Henry’s “singular influence” on late nineteenth century artists derived from the ways in which his scientific aesthetic allowed artists to make use of the insights of physiology with only a basic understanding of the scientific practices. Brain argues that this appealed especially to artists ready and willing to “dissolve” artistic forms into algorithms. The examples of artistic instruments, like an aesthetic protractor and tables of rhythmic numbers, that are included in the book underscore the era’s fascination with scientific practices.
Brain avoids making the kind of general, non-specific “zeitgeist” claims that plague many efforts to connect science and art. Instead, Brain has clear evidence of both direct and indirect connections between artists and physiologists. This allows him to make much stronger claims about the intention behind various art pieces and the artist’s understanding of protoplasm, linguistics, and more. Brain studies artists in a wide variety of mediums, including the painters Edward Munch, Georges Seurat, and Francis Picabia, Futurist poet F.T Marinetti, avant-garde dancers, and musicians. The breadth of Brain’s analysis should be commended—he found the influence of physiological systems across art forms and artistic movements and his close readings of images, texts, and dances explicitly reference the insights discussed in the first portion of the book.
Although the first part appears to focus only on the history and anthropology of the laboratory while the second section provides lengthy analysis of art, Brain expertly weaves art and science together throughout the book. He is deeply attuned to the ways that these various apparatuses produced images that always required dual readings—both of the intellectual content (e.g. scale, continuities and ruptures, etc) and what he terms a “sensible intuition” of the graph (e.g. the quality of the line, its form, rhythm). This kind of dual reading is exactly why laboratory systems appealed to creative artists and it is this insight that allows Brain to make his larger claims about modernism and physiology.
The book raises interesting questions about the political possibilities that artists and scientists ascribed to these new techniques. For instance, Brain explores how Seurat’s painting techniques fit into a larger political ideology and economic system. His findings about the art market and artists’ attempt to use insights from physiology to control the viewer’s response to a piece (and by extension their desire to purchase the piece) point in intriguing ways to the material constraints facing these experimental artists. Physiological aesthetics promised to give the artist some control over their position in an insecure art market outside the salon system. However, he does not extend this kind of analysis to many of the other artists who he focuses on. If the book has a weakness, it is that Brain does not consistently articulate the political and economic factors that shaped the production and reception of these new, avant-garde works.
It may be difficult to teach from The Pulse of Modernism because of the enormous breadth of topics, methods, theories, and sources that Brain mobilizes over the course of his investigation. However, with careful scaffolding and pairing with related texts, the book could prove a useful addition to an upper-level course.
The very characteristics that may limit its use in a classroom make it an excellent book for researchers. Medical historians and historians interested in the social history of science, medicine and/or the body will also find this book useful. Brain’s descriptions of the development of specific tools and the evolution of various scientific ideas nicely compliment the book’s cultural analysis. The Pulse of Modernism, especially its first section, provides a model for a cultural history of science deeply attuned to the theoretical questions around knowledge, representation, and recording. Literary scholars and art historians will find much to recommend this book. Not only does The Pulse of Modernism provide an excellent historical background to today’s discussions of bio-art and bio-design, it raises important questions about the periodization of and influences on modernism.
Ashley Bowen-Murphy is a PhD candidate in American Studies and Public Humanities at Brown University.
How did we get here? A review of Yasmin Gunaratnam’s “Death and the Migrant: Bodies, Borders and Care” by Branwyn Poleykett
Bloomsbury Publishing, 2013, 208 pages
David Tasma, a Polish Jew and survivor of the Warsaw ghetto, died in 1949 in the care of a British nurse, Cicely Saunders. The £500 he bequeathed to Saunders contributed to the founding of the St Christopher’s Hospice in Sydenham, an institution dedicated to accompanying the dying and palliating what Saunders described as the “total pain” experienced by people at the end of life. The knot of Saunders and Tasma’s relationship, its opacity and sensuality, and the complex exchange of gifts, debt and obligations between them, lies at the heart of Yasmin Gunaratnam’s analysis of diasporic dying in Death and the Migrant.
Gunaratnam draws on hospice ethnography, encounters with patients, narrative interviews with care staff, archival research, and her experiences teaching palliative care to investigate the ‘overlapping estrangements of migration, disease and dying’ (p. 8). Through elegant, elliptical, partly autobiographical analysis, she explores the vulnerabilities of migrants, how they can be ‘de-worlded by loss’ (p. 6), and how these losses, a withering of relations and winnowed down world of connection, can shape their experiences of growing old, falling ill, and dying. Migrants dying in the UK have often made extraordinary sacrifices for their ‘ordinary’ deaths among strangers. Gunaratnam’s research participants reflected to her on the experiences of estrangement and racism that attenuated their wellbeing, experiences that under some circumstances can position them as ‘difficult’ patients, seen by hospice staff and palliative social workers as hostile and obstructive.
Gunaratnam describes her aims for the book as twofold: to investigate the philosophical implications of transnational dying and to produce better care, and her analysis braids together these two objectives moving seamlessly between these different registers. Indeed, the book is at its best when it diagnoses care. Gunaratnam draws attention, for example, to how the care available to minoritized people, while it might not be catastrophically failed, can lack the experimental edge that marks high quality care and how racism operates to constrict ‘the adventurous spaces of caregiving’ (111).Gunaratnam’s ethnography is a brilliant exposition of the work of ‘new’ or ‘cultural’ racisms (a frequently well-intentioned desire to accommodate cultural difference) creates attenuated intimacies and lacunae in caregiving. Caregivers are guided towards ‘appropriate’ deaths through a manual, the ‘culture GPS’, and extracts from caregiving manuals explaining and proscribing Hindu traditions of death are juxtaposed to nurses’ accounts of searching for and giving the best and most appropriate care; a more tentative, fraught and above all awkward process than the manual can anticipate or capture.
For as much as the nurses and palliative social workers stress the importance of being attuned to the wishes of individual patients and the ethical obligation to give to those patients the death they have chosen – and there are a few stunning examples in the book of thoughtful care – there is, it is clear, a common-sense of a “British” way of death from which, in practice, it is difficult to deviate. Dying “quietly” (Gunaratnam is exquisitely attuned to the auditory life of the hospice) is a cultural expectation on the part of the nurses for whom a raw and noisy expression of grief can be received as an excessive demand on the attention of staff, as a stratagem. Silence, too, is important. In one of the books most moving and insightful chapters, an account of a young Kenyan man dying from HIV related cancers, Gunaratnam draws out the etymology of palliation that relates it to shrouding and to hiding. The book shows us how secrecy is a way of taking care of oneself when one has devolved many of the intimate functions of personal care onto professionals. The book is a masterclass in how to read qualitative interview fragments and how to convey to the reader the distinct singularities of each encounter, of interviews that were punctuated by lapses, by expressions of pain and grief, of the difficulty in living with and expressing total pain: ‘the pain that is accrued over a lifetime’ (p. 137).
The textures of care on the ward are brilliantly evoked but the book does not neglect the intimate economies of care within families and in the home. Gender is of course crucial to the negation of this care but the stories Gunaratnam exposes are surprising. Home-based care for elderly men provides young Bangladeshi men, recent migrants to London’s East End, with a network of arrival and kinship. The status of ‘carer’ with its technologies, its apparatuses, its tender arrangements of dependency, offers a surprising and unexpected outlet late in life for a woman married to a controlling and volatile man.
I learned an enormous amount from this book. I learned about the presence of the transnational stranger in the originary stories of care, how the NHS calibrates debts and needs and how the institution understands its own complex postcolonial history as a history of mutuality and obligation (the author’s father was part of the generation of migrants “called” to work in the NHS who are now dying under its care). I learned how borders open to those seeking work in the care economy and close to the circulation of exhausted, dying bodies and bodily remains from the UK to the “home” that remains elsewhere.
Reading the book amidst the explosion of interest in ‘global health’ as an emerging field of anthropological engagement, I was particularly struck by how much this book has to teach us about mobility and globality. Stories of transnational dying, Gunaratnam argues, ‘complicate what we think of as migration, globalisation and care’ (p. 11). Medical anthropologists perhaps too frequently think and teach ‘global health’ as if it were the political economic bureaucratic structure given to us by international philanthropic non-governmental entities and not the complex and variegated conditions for living, working, flourishing, and dying for diasporic people and their families. This ‘fleshy account of geosocial politics from below’ (p. 22) clears a new path towards other stories.
Branwyn Poleykett is a Research Associate at the Centre for Research in Arts, Social Sciences and Humanities at the University of Cambridge.
Graduate Student Response to “When It’s Time to Vote, Don’t Boycott Academics–Cut the Purse Strings” by Emma Shaw Crane
As graduate students and new members of the American Association of Anthropologists, we approach the academic boycott resolution vote with hope. We write today in response to “When It’s Time to Vote, Don’t Boycott—Cut the Purse-strings”, which outlines an argument against the resolution and calls instead for “targeted, collective action”. The academic boycott is exactly this: a targeted, collective action, and one that students across the country have chosen to support. In the past few months, graduate student unions at NYU, the University of California, and the University of Massachusetts, Amherst, have voted to boycott and divest from Israeli occupation industries and Israeli academic institutions. At NYU, over half of voting graduate students also pledged to personally uphold an academic boycott. We voted for the AAA boycott resolution because it is a collective action that respects the autonomy and judgment of Palestinian civil society, who have determined for themselves, over the last 50 years, how to best engage those who wish to stand in solidarity with their struggle against the occupation.
Thousands of students across the country are organizing to answer the call from Palestinian civil society to pressure the Israeli state to meet its obligations as an occupying power under international law and to recognize the Palestinian people’s inalienable right to self-determination, dignity, and protection. An academic boycott aims to cut the purse strings between academic institutions: it asks the AAA membership to boycott conferences, consortiums, and grants sponsored by Israeli state-funded institutions. It agrees with those authors’ admirable commitment to resisting the occupation but does not exempt academic labor and exchange from the purview of the boycott. Academic speech is never free of funding or institutional stakes, and we must leverage our collective authority as professional intellectuals, attuned as we anthropologists are to excesses of state violence and censorship-by-fear. This muddling between claimed intensions and prescriptions for more “correct” alternatives to end the occupation is perplexing at best. At worst, “When It’s Time to Vote, Don’t Boycott” is another example of the many tactics used to confuse, derail, and discredit those who view academic boycott as a viable, measured, and appropriate response to the current attacks on Palestinian academic freedom.
The authors of “When It’s Time to Vote, Don’t Boycott Academics” write that, “American academics are just as complicit in the crimes of our own government as Israeli academics are in crimes of theirs.” We agree. But such a comparison obscures the specificity and context of this boycott. There currently exists no such call from the grassroots in places affected by U.S. policy to boycott U.S. academic institutions. Should there be such a call, we hope the AAA will support it. Meanwhile, many of us have participated in boycotts within our own institutions, such as the University of California subcontracted workers’ call for a boycott of on-campus lectures until equal-wage contracts are guaranteed.
The authors suggest that not only this resolution but the “very idea of academic boycott” is “tearing our field apart”. We believe that protecting the ability to organize and participate in boycotts is necessary for any democratic organization. Students have long led and participated in boycott movements, including the effective academic boycott of apartheid South Africa. We refuse to participate in the ongoing repression of Palestinian students and faculty, who are discriminated against at every stage of schooling; excluded from Israeli universities; and targeted and repressed when organizing at their universities. The boycott offers us a way to publicly articulate this refusal.
The authors also argue that, “the call for academic boycott has injected poison into the field and engendered cacophony, acrimony, and deep, often paralyzing anxiety. Many a friendship has been strained, or lost, or sacrificed these past few years. Once cordial professional relationships have soured or been severed”. This suggests that the bullying, censoring, and policing of “acceptable speech” in our field—aimed particularly against those who study Israel/Palestine—is not already poisonous. Online anti-boycott campaigns target junior and untenured faculty. Organizations like Canary Mission single out and harass anthropology students and faculty in an attempt to harm job prospects. A recent lawsuit targets individual professors involved in the 2013 American Studies Association vote to endorse the boycott of Israeli academic institution. Such tactics are part of an organized and concerted campaign aimed not at maintaining the integrity of our discipline but at preventing the resolution from passing and exhausting people into indifference.
The authors ask what kind of anthropology this is. We believe this is an anthropology committed to critical, ethical engagement with the world and to the work of social justice and solidarity. The definition of academic freedom, as adopted by the United Nations, states that the “enjoyment of academic freedom carries with it obligations, such as the duty to respect the academic freedom of others, to ensure the fair discussion of contrary views, and to treat all without discrimination on any of the prohibited grounds.” The academic boycott is an exercise in academic freedom; it is our chance to answer the call of Palestinian civil society and every single Palestinian university. It is up to us to take seriously the requests of our Palestinian colleagues and to stand with them. Let us act immediately and purposely in voting for the academic boycott.
Emma Shaw Crane, Doctoral Student, American Studies, NYU
Dina Omar, Doctoral Student, Anthropology, Yale
Gray Abarca, Doctoral Student, Anthropology, UC Irvine
George Bajalia, Doctoral Student, Columbia University
Kathryn Cox, Doctoral Student, Anthropology, UC Irvine
Nadia Gaber, MD-PhD Student, Medical Anthropology, UCSF
Randa May Wahbe, Doctoral Student, Anthropology, Harvard
Fernando Montero, Doctoral Candidate, Anthropology, Columbia University
Jessica Newman, Doctoral Candidate, Anthropology, Yale
Samee Sulaiman, Doctoral Student, Anthropology, Brown University
Annie Wilkinson, Doctoral Student, Anthropology, UC Irvine
Anonymous, Doctoral Candidate, Private University
Anonymous, Doctoral Student, Private University
Anonymous, Doctoral Student, Private University
For this installment of the Top of the Heap series, I spoke with Helen Verran, a historian and philosopher of science who is Adjunct Professor at Charles Darwin University in Australia as well as holding a position at the Norwegian University of the Arctic.Helen Verran
A display of a story about computer application that was never built – the Touch Pad Body. In 2016 it exists only as electronic seed code in a few computers. Apart from that it has life in two stories that have been told about it: a pamphlet of four pages (see PDF here; first page at right) and an academic paper (Christie and Verran, 2014). The experience of collectively imagining the Touch Pad Body as an entity, and imbuing it with what might be called ‘life in potentia’, was an element in an inquiry with the project name “East Arnhem Client Education and Health Interpreting”. That inquiry conducted as contract research for a local health services provider, instances the logic of inquiry that I elaborate here. It is the experience of such inquiry and the experience in such inquiry, which the books at the top of my pile of current reading attend to, as in undertaking methodological study I further elaborate what method in relational empiricist inquiry is. For me, unlike most of my contemporaries, method is quite a different matter than methodology.
In Australia I work as part of the Ground Up group in the Northern Institute at Charles Darwin University in Australia’s Northern Territory. We undertake contract research, what might be called commonsense inquiry in search of useful and good responses for everyday problems of those who live in the NT’s Indigenous communities. But our research includes two further elements. We insist that those who engage our services include in their budget funds earmarked to pay for the work and training of Indigenous citizen researchers. Building the capacities of cohorts of researchers who are members of the communities being researched is an integral part of contracting our services to undertake inquiry of public or social problems. From a politico-epistemic point of view this capacity building work contributes to the development of a problem’s public—a public that, in addition to those whose lives are tangled in and by the social problem, necessarily includes us as academics and those who work in the government department, the NGO, or the business, that has retained our services, and perhaps others too if, say, the media get involved.
The second element, which adds onto the contract research but which we do not insist clients pay for, and for which the university system must foot the bill, and which increasingly in Australia it resists, is the academic research that is embedded in the commonsense inquiry. I style the scholarly research focus I am most interested in as inquiring into the workings of the collective politico-epistemic practices of our commonsense research. Others in our group are more interested in linguistic or organisational aspects of emerging contemporary Indigenous epistemic practice. This scholarly inquiry inquires into inquiry itself. And that insistence on iterativity in inquiry is perhaps what characterises relational empiricism as I understand it.
My first inspirations for this iterative styling of inquiry are the object lessons I learned from Yolngu Aboriginal colleagues and knowledge authorities, starting in the 1980s. Analytic concepts relevant at a particular time and place for particular sets of purposes were offered to the collective. Milngurr, Ganma, Garma and Galtha feature in Yolngu life as stories and more, in accounting emergence of collective life. Yolngu in other heres and nows will of course come up with alternative relevant concepts. These concepts function like diagrams in that they offer both pilotage and a form of representation when necessary (Christie and Verran, 2013; Verran and Winthereik, 2016). In addition I find inspiration in the work of John Dewey, early twentieth century Pragmatist philosopher. Dewey first articulated a vision of iterative inquiry in inventing the curriculum of the Chicago Laboratory School in 1896. Here he imagined curriculum and pedagogy as in beginning, embedded in the everyday and its social problems. Reading, writing and arithmetic, along with the subjects like physics, chemistry, language study, history and geography emerge as functions of collective life. The aim of schooling and education as Dewey saw it, was however to outgrow this common sense form of inquiry, and grow schooling and education into inquiry into inquiry itself.
Dewey spent a lifetime in the academy attempting to convince his colleagues in philosophy that logic, for him a theory of inquiry, is form that is not given by some ‘real structure’ of a world imagined as out-there that might be known by a mind. But rather emergent in collectives, people going on inquiringly together in particular places and times in pursuit of a common purpose, and inquiring into their inquiring, as they do. It is by using forms that are emergent, as commonsense inquiry gives way to inquiry into inquiry that researchers simultaneously engage and elaborate a theory of inquiry as a single moment. This is why a Dewey text first published in 1929, features in my contribution to Top of the Heap.
So the book on the very top of the pile that sits by my armchair, is an old book, Experience and Nature. I read it to worm my way into Dewey’s story of logic and inquiry. I do not read his much later book that has logic in its title. That text it seems to me to betray his earlier insights. John Dewey, the philosopher, in 1929 argued cogently that inquiry and its logic lies within experience. Yet, in Logic, The Theory of Inquiry published in 1938, this same philosopher who had no experience of doing science, proposes the epistemic practices of early twentieth century science as the exemplar of logic; as the theory of inquiry. I’ll suggest an explanation for this strange turn in Dewey’s writing below. So in my reading, despite that I am concerned with logic and inquiry, I limit my focus to Experience and Nature. Here Dewey links the requirement to be explicit about metaphysical commitments to empirical methods of inquiry, and by extension empirical methods of inquiry into inquiry—methodology.
Having introduced my book pile and the thinking it informs, I begin my stories of reading with the ‘Touch Pad Body’. The displayed pamphlet is one of a number of outcomes of a contracted research project on what the funding organisation called ‘health literacy’. Alert readers of the text will discern that our collective inquiry was informed by our reading of recent work in medical anthropology. In particular, Lock and Farquhar’s Beyond the Body Proper: Reading the anthropology of material life and Mol’s The Body Multiple: Ontology in Medical Practice, can be inferred as influences. So despite their not literally being in my pictured pile, I include these books in this text. They help explain why and how Dewey’s text is useful.
Beyond the Body Proper is a door-stopper, a collection of over 50 essays—ethnographic, philosophical, and historical, arranged in nine sections. It would be usual in such a collection to style the integrative interpreting essays as a compare and contrast exercise. However, wisely in my view, the editors start with difference. They emphasise divergence, and their point of departure is ‘the body proper’—what was in the heyday of Cartesian mind-body dualism the singular, individuated biological organism with an individual psyche. Emphasising how scholars in the social sciences and humanities have moved on from that definitive singular body, the editors render the body proper as an empty formalism. It is what holds things together long enough for the various scholars whose works are collected here, each doing their own divergent thing, to agree enough that what they’re looking at is common to them all. The body proper is like the vague whole thing that blind men are fingering their way around in some disagreement, as collectively they examine what we who gaze at the cartoon, recognise as an elephant.
And too Mol’s ‘body multiple’ implies the vague whole, the empty formalism of the body proper. This formalism is what enables clinicians, vascular surgeons, pressure measuring technicians, social workers, and not least the story-telling patients, who complain of leg pains, and the ethnographer who converses with all those participants to all unproblematically assume they are speaking of one thing when their experiences could hardly be more different. Focusing on the disparate experiences, Mol suggests that the vague body proper—a concept, is in actuality a collection of many bodies all differently enacted, but, and in differing ways, all are connected by the vague empty formalism of the ‘body proper’.
The ‘touch pad body’ too is a vague whole empty formalism. I bring it in here because it helps me answer a question that students often put to me after reading chapters from The Body Multiple that I have set as their prescribed reading: “But what can you do with the insight that the body is inevitably multiple and that the singular, definitional, imagined biophysical medical body is a vague whole empty formalism?” As the ‘touch pad body’ we attempted to use the juxtaposition of the concept rich ‘body multiple’, and the empty, formal ‘body proper’, to foreground practices of communication.
Communication here is not understood as a conduit, a neutral technique used to bridge the mental capacities and characteristics of individuals, something that allows minds mysteriously embedded in individual singular bodies to connect one to the other. Here communication is understood as Dewey used the notion, as means and ends of a good society, as deeply normative and political practice.
When communication occurs, all natural events are subject to reconsideration and revision; they are re-adapted to meet the requirements of conversation, whether it be public discourse or that preliminary discourse termed thinking. Events turn into objects, things with a meaning. They may be referred to when they do not exist [in the here and now of a conversation], and thus be operative among things distant in space and time, through vicarious presence in a new medium. (Experience and Nature, p.138)
This idea of communication incorporates an understanding of representation that has faded today in the wake of the mid-twentieth century ascendance of positivism. This more inclusive and vague meaning of communication and representational was however still a force as recently as the 1960s. In my pile of reading, it is represented by Hanna Fenichel Pitkin’s The Concept of Representation (1967). As Pitkin tells it, representation is the work of managing a paradox—the practices involved in making something present that is not actually present in a here and now. To be concerned with communication in this sense is to become sensitised to all the work that is involved in expanding the resources of experience.
The ‘Touch Pad Body’ is concerned with re-presentation of Indigenous body (the hyphen indicating my commitment to re-presenting that old version of representation). In clinical encounters in northeast Arnhem Land an Indigenous body might well be there in the here and now, but nevertheless, because of the cultivated blindness of biomedical eyes to bodies that are not biomedical bodies, that physically here and now Indigenous body exists outside the here and now of the clinical encounter. The Indigenous body as a signing materialising body is uneasy, has precipitated the clinical encounter, but it cannot easily be connected up with the biomedical body. Certainly that exclusion is a problem for the ill Indigenous body, but of course it also actively prevents any possibility of informed consent, so it is also of vital concern for a medical practitioner.
The empty vague formalism of the ‘Touch Pad Body’ however does have capacity in the here and now of a clinical encounter to become, albeit partially, as simultaneously both the Indigenous body and the biomedical body. The annotated touch pad body that emerges from a clinical encounter mediates; it is a body of the collective experience of the conversation of that encounter. This partially connected body emerged naturalistically within the encounter.
So the ‘body proper’, ‘the body multiple’ and ‘the touch pad body’ all speak to the on-going agency of the concept of body as an empty formalism. This brings me back to my book pile with Experience and Nature sitting on top, and to the questions that students ask about how to go beyond merely showing again and again the sort of multiplicity that Mol demonstrates. My answer to students reminds them that they need to learn how to trust other knowers, as subjects figured in unfamiliar ways, and even more tricky, how to trust objects known, for example numbers, that equally might be figured in odd and peculiar ways. To do that we need to learn how to recognise and respect, and how to work well with particular concepts as empty formalisms. In part this is what my Science and an African Logic deals with in taking on the idea of number as such as an empty formalism. And that is why, perhaps immodestly, it features in my reading pile. Selectively re-reading it reminds me of why I should struggle with Dewey’s Experience and Nature. Dewey’s ‘nature’ is perhaps the ur-empty formalism.
Unlike other empiricists both of his times and ours, Dewey opposes what he calls “the postulate of immediate empiricism” (Dewey, 1905). Experience as Dewey has it consists in the first instance not of theorize-able contents—things known, but of having and enjoying. Experience is the inseparable engagement of the objects of our concern with our concern: the beings loved and hated and the loving and hating. The objects of experience—the things known, inevitably blend into their own backgrounds. So as we experience things we experience the settings of things; we can only ever know things in a particular here and now. But, as a heuristic in knowing about knowing we can strategically imagine setting as an empty formalism—nature. Nature is a persisting being… a constant of all experience and incorporated into our doings and carings. Experience is our doing and caring “penetrating into nature and expanding through it” through inquiry and inquiring into that inquiring.
Dewey’s works are voluminous, he lived a long life and wrote copiously, and his texts are notoriously difficult to read. His words are obscure and often arranged in frankly unhelpful ways. For me reading Dewey is a slog in a way few other texts I read are. Part of the problem in reading is that I am completely unfamiliar with the critics he is attempting to pre-empt and out-manoeuvre. It took a bit of detective work for example to work out, that Dewey’s claim that his logic is ‘scientific’ probably seeks to oppose the claims of transcendentalist Santayana who challenged Dewey’s naturalist monism. In other places Kaufman, a proponent of immediate empiricism in opposed. Yet despite this if I persevere with Dewey’s Experience and Nature, I find that the author does succeed in helping me to learn to experience experience and nature in ways that can help to routinely go beyond merely revealing multiplicity again and again.
The wonder of Experience and Nature is that Dewey has pursued and expounded on this insight in myriad situations—histories, knowledge, communication, minds and subjects, consciousness, art, value and criticism. I find that wherever I attempt to go with that generative account of experience, Dewey has already been there. That’s why Experience and Nature has been at the top of my book pile for many months now.
Professor Helen Verran is a philosopher who holds positions at Charles Darwin University in northern Australia, and the Norwegian University of the Arctic in northern Norway. In both positions she works with Indigenous citizens as they attempt to negotiate modern institutions.
Pile of books: © Helen Verran
Another set of great papers from the journals in April. Enjoy!
Louise Locock, Sarah Nettleton, Susan Kirkpatrick, Sara Ryan and Sue Ziebland
Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients’ expectations, degree of trust in professionals, and even health outcomes.
Lucy C. Farrell, Megan J. Warin, Vivienne M. Moore, and Jackie M. Street
The potential for regulatory measures to address escalating rates of obesity is widely acknowledged in public health circles. Many advocates support regulations for their potential to reduce health inequalities, in light of the well-documented social gradient in obesity. This paper examines how different social groups understand the role of regulations and other public health interventions in addressing obesity. Drawing upon focus group data from a metropolitan city in southern Australia, we argue that implementing obesity regulations without attention to the ways in which disadvantaged communities problematise obesity may lead to further stigmatisation of this key target population. Tuana’s work on the politics of ignorance, and broader literature on classed asymmetries of power, provides a theoretical framework to demonstrate how middle class understandings of obesity align with dominant ‘obesity epidemic’ discourses. These position obese people as lacking knowledge; underpinning support for food labelling and mandatory nutrition education for welfare recipients as well as food taxes. In contrast, disadvantaged groups emphasised the potential for a different set of interventions to improve material circumstances that constrain their ability to act upon existing health promotion messages, while also describing priorities of everyday living that are not oriented to improving health status. Findings demonstrate how ignorance is produced as an explanation for obesity, widely replicated in political settings and mainstream public health agendas. This politics of ignorance and its logical reparation serve to reproduce power relations in which particular groups are constructed as lacking capacity to act on knowledge, whilst maintaining others in privileged positions of knowing.
Arne Ruckert, Ronald Labonté, Raphael Lencucha, Vivien Runnels and Michelle Gagnon
Global health diplomacy (GHD) describes the practices by which governments and non-state actors attempt to coordinate and orchestrate global policy solutions to improve global health. As an emerging field of practice, there is little academic work that has comprehensively examined and synthesized the theorization of Global Health Diplomacy (GHD), nor looked at why specific health concerns enter into foreign policy discussion and agendas. With the objective of uncovering the driving forces behind and theoretical explanations of GHD, we conducted a critical literature review. We searched three English-language scholarly databases using standardized search terms which yielded 606 articles. After screening of abstracts based on our inclusion/exclusion criteria, we retained 135 articles for importing into NVivo10 and coding. We found a lack of rigorous theorizing about GHD and fragmentation of the GHD literature which is not clearly structured around key issues and their theoretical explanations. To address this lack of theoretical grounding, we link the findings from the GHD literature to how theoretical concepts used in International Relations (IR) have been, and could be invoked in explaining GHD more effectively. To do this, we develop a theoretical taxonomy to explain GHD outcomes based on a popular categorization in IR, identifying three levels of analysis (individual, domestic/national, and global/international) and the driving forces for the integration of health into foreign policy at each level.
Katherine Weatherford Darling, Sara L. Ackerman, Robert H. Hiatt, Sandra Soo-Jin Lee and Janet K. Shim
Despite a proclaimed shift from ‘nature versus nurture’ to ‘genes and environment’ paradigms within biomedical and genomic science, capturing the environment and identifying gene-environment interactions (GEIs) has remained a challenge. What does ‘the environment’ mean in the post-genomic age? In this paper, we present qualitative data from a study of 33 principal investigators funded by the U.S. National Institutes of Health to conduct etiological research on three complex diseases (cancer, cardiovascular disease and diabetes). We examine their research practices and perspectives on the environment through the concept of molecularization: the social processes and transformations through which phenomena (diseases, identities, pollution, food, racial/ethnic classifications) are re-defined in terms of their molecular components and described in the language of molecular biology. We show how GEI researchers’ expansive conceptualizations of the environment ultimately yield to the imperative to molecularize and personalize the environment. They seek to ‘go into the body’ and re-work the boundaries between bodies and environments. In the process, they create epistemic hinges to facilitate a turn from efforts to understand social and environmental exposures outside the body, to quantifying their effects inside the body. GEI researchers respond to these emergent imperatives with a mixture of excitement, ambivalence and frustration. We reflect on how GEI researchers struggle to make meaning of molecules in their work, and how they grapple with molecularization as a methodological and rhetorical imperative as well as a process transforming biomedical research practices.
Joana Almeida, Jonathan Gabe
This paper examines the extent to which the position of the medical profession and the state towards complementary and alternative medicine (CAM) practitioners has changed since the late 1990s, taking Portugal as a case study. Using Light’s concept of countervailing powers, we consider the alliances, interests, rhetoric and degrees of control between these three actors over time, focussing particularly on the extent to which CAM practitioners have acted as a countervailing force in their relationship with the medical profession and the state. It also brings to the fore the position of supra-state agencies concerning CAM regulation. A critical discourse analysis was conducted on data derived from a systematic search of information dating from the late 1990s up to 2015. Our analysis suggests that CAM has emerged as an active player and a countervailing power in that it has had significant influence on the process of state policy-making. The medical profession, in turn, has moved from rejecting to ‘incorporating’ CAM, while the state has acted as a ‘broker’, trying to accommodate the demands and preferences of both actors while simultaneously demonstrating its power and autonomy in shaping health policy. In sum, the history of countermoves of CAM, the medical profession and the state in recasting power relations regarding CAM regulation in Portugal has highlighted the explanatory value of Light’s countervailing power theory and the need to move away from a professional dominance and corporatist approach, in which CAM has simply been seen as subjugated to the power of the medical profession and the state.
Over the past decade, many ingenious, small-scale gadgets have appeared in response to problems of disaster and extreme poverty. Focusing on the LifeStraw®, a water filtration device invented by the company Vestergaard Frandsen, I situate this wave of humanitarian design relative to Marianne de Laet and Annemarie Mol’s classic article on the Zimbabwe Bush Pump. The LifeStraw shares the Bush Pump’s principle of technical minimalism, as well as its ethical desire to improve the lives of communities. Unlike the pump, however, the straw defines itself through rather than against market logic, accepting the premise that one can ‘do well while doing good’. Moreover, it does not share the assumed framework of de Laet and Mol’s Zimbabwean socio-technical landscape: a postcolonial state happily en route to national self-definition. Nonetheless, it clearly embodies moral affect, if in the idiom of humanitarian concern rather than development. My aim is to open up three interrelated lines of inquiry for discussion. First, I consider aspects of a postcolonial condition at the micro-level of immediate needs, including assumptions about nation-state politics and markets. Second, I emphasize science and technology in the form of infrastructure, the material frontline of norms. Third, I return reflexively to love, and the complicated allure of engagement in academic work.
In this article, I reflect on the Radiation Effects Research Foundation and its ongoing studies of long-term radiation risk. Originally called the Atomic Bomb Casualty Commission (1947–1975), the Radiation Effects Research Foundation has carried out epidemiological research tracking the biomedical effects of radiation at Hiroshima and Nagasaki for almost 70 years. Radiation Effects Research Foundation scientists also played a key role in the assessment of populations exposed at Chernobyl and are now embarking on studies of workers at the Fukushima Daiichi Nuclear Power Plant. I examine the role of estimating dosimetry in post-disaster epidemiology, highlight how national identity and citizenship have mattered in radiation risk networks, and track how participants interpreted the relationships between nuclear weapons and nuclear energy. Industrial interests in Japan and the United States sought to draw a sharp line between the risks of nuclear war and the risks of nuclear power, but the work of the Radiation Effects Research Foundation (which became the basis of worker protection standards for the industry) and the activism of atomic bomb survivors have drawn these two nuclear domains together. This is so particularly in the wake of the Fukushima disaster, Japan’s ‘third atomic bombing’. The Radiation Effects Research Foundation is therefore a critical node in a complex global network of scientific institutions that adjudicate radiation risk and proclaim when it is present and when absent. Its history, I suggest, can illuminate some properties of modern disasters and the many sciences that engage with them.
Adam Isaiah Green
In this article, I draw from an ongoing ethnographic study of HIV prevention for gay, bisexual, and ‘men who have sex with men’ to develop an institutional analysis of HIV behavioral intervention science and praxis. I approach this analysis through the lens of the social worlds framework, focusing on the institutional arena in which HIV behavioral interventions are devised and executed. Toward this end, I focus on two fundamental points of contention that lie at the heart of the prevention enterprise and put its social organization in high relief: (1) conceptions of health and lifestyle practices and (2) attributions of expertise. These core contentions reveal less the steady advance of normal science than an arena of actors ensconced in boundary work and jurisdictional struggles over how to engineer behavior change and reduce the scale of the HIV epidemic. Their resolution, I argue, has occurred in a historically contingent process determined by the political economy of the US HIV prevention arena and the differential structural location of its social worlds.
Jenna M Grant
Controversies about global clinical trials, particularly HIV trials, tend to be framed in terms of ethics. In this article, explore debates about ethics in the Cambodia Pre-Exposure Prophylaxis trial, which was designed to test the safety and efficacy of tenofovir as a prevention for HIV infection. Bringing together studies of public participation in science with studies of bioethics, I show how activists around the Cambodian Pre-Exposure Prophylaxis trial circulated and provoked debates about standards of research ethics, as opposed to research methodology. This postcolonial bioethics was configured through the circulation of and debate about ethics guidelines, and historically and culturally specific relations of vulnerability and responsibility between foreigners and Cambodians and between Cambodian leaders and Cambodian subjects. I argue that this shift in the object of ethical concern, from the experimental human subject to the relation between subjects and researchers, illustrates how a postcolonial field of articulation reformulates classical bioethics.
Research and innovation policy has invested considerable effort in creating new institutional spaces at the interface of academia and business. High-tech startups founded by academic entrepreneurs have been central to these policy imaginaries. These companies offer researchers new possibilities beyond and between academia and larger industry. However, the field of science and technology studies has thus far shown only limited interest in understanding these companies as spaces of knowledge production. This article analyses how researchers working in small and medium-sized biotechnology companies in Vienna, Austria, describe the cultural characteristics of knowledge production in this particular institutional space. It traces how they relate these characteristics to other institutional spaces they have experienced in their research biographies, such as in academia or larger corporations. It shows that the reasons why researchers decide to work in biotechnology companies and how they organize their work are deeply influenced by their perception of deficiencies in the conditions for epistemic work in contemporary academia and, to a lesser degree, in industry.
Rodrigo Ribeiro and Francisco PA Lima
Collins and Evans have proposed a ‘normative theory of expertise’ as a way to solve the ‘problem of demarcation’ in public debates involving technical matters. Their argument is that all citizens have the right to participate in the ‘political’ phases of such debates, while only three types of experts should have a voice in the ‘technical’ phases. In this article, Collins and Evans’ typology of expertise – in particular, the idea of ‘interactional expertise’ – is the focus of a detailed empirical, methodological and philosophical analysis. As a result, we reaffirm the difference between practitioners and non-practitioners, contesting the four central claims about interactional expertise – namely, that (1) the idea of interactional expertise has been proven empirically, (2) it is possible to develop interactional expertise through ‘linguistic socialization alone’, (3) the idea of interactional expertise supports the ‘the minimal embodiment thesis’ that the individual human body or, more broadly, ‘embodiment’ is not as relevant as linguistic socialization for acquiring a language and (4) interactional experts have the same linguistic fluency, understanding and judgemental abilities of practitioners within discursive settings. Instead, we argue, individuals’ abilities and understandings vary according to the ‘type of immersion’ they have experienced within a given practice and whether they bring with them another ‘perspective’. Acknowledging these differences helps with demarcation but does not solve the ‘problem of demarcation’. Every experience is perspectival and cannot handle, alone, the intertwined and complex issues found in public debates involving technical matters. The challenge, then, concerns the ways to mediate interactions between actors with distinct perspectives, experiences and abilities.
Eugene Raikhel and Dörte Bemme
Over the past decades, the formerly socialist countries of East Central Europe and Eurasia have experienced a range of transformations which bear directly upon the domains of mental health, psychiatry, and psychology. In particular, the disciplines and professions concerned with the human mind, brain, and behavior (“the psy-ences”) were strongly affected by sociopolitical changes spanning the state-socialist and postsocialist periods. These disciplines’ relationship to the state, their modes of knowledge production, and the epistemic order and subjectivities they contributed to have all undergone dramatic ruptures. In this essay, we trace the literature on these issues across three thematic domains: (a) history and memory; (b) the reform of psychiatry in an era of global mental health; and (c) therapy and self-fashioning. We argue for a closer articulation between the social science and historical literature on socialism and its “posts” and the literature among anthropologists, sociologists, and historians on the sciences of the mind and brain, and we suggest that each of these literatures helps to critically open up and enrich the other.
Jack R. Friedman
Since the end of Communism, mental health care in Romania has increasingly sought to align its practices with idealized models of Western psychiatric practice. Much of this realignment has been made possible by accessing and integrating new pharmaceuticals into psychiatric hospital settings. Less straightforward have been the painful attempts to create a system modeled on international standards for training and certifying psychotherapists. Unfortunately, the political, economic, infrastructural, and epistemological environment of the Romanian mental health care system has prevented many other reforms. This paper examines the ironic trajectory that Romanian psychiatry has taken since the end of state socialism. Specifically, this paper shows how psychiatric practice in most places (outside of university-training hospitals) is increasingly disconnected from a concern with the social conditions that surround mental illness during a period when social upheaval is profoundly impacting the lives of many people who receive mental health care. Thus, as the contribution of social problems to the suffering of those with mental illnesses has increased, some Romanian mental health practitioners have moved away from a concern with these social problems under the guise of aligning their psychiatric practices with (imagined) Western standards of biomedical care. The paper provides a brief history of Romanian psychiatry and explores contemporary challenges and contradictions in many Romanian psychiatric treatment settings through the case study of a 31-year-old Romanian female diagnosed with paranoid schizophrenia.
Jennifer J. Carroll
Available treatments for addiction and substance abuse in Ukraine have been shaped by the economic, political, and social shifts that have followed the country’s independence. The introduction of methadone-based opiate substitution therapy (OST) for opiate addicts is especially representative of this. Biomedical paradigms of addiction, its etiology, and its treatment, promoted and paid for by international donors and elite global health entities, are being met by Ukrainian notions of personhood and psychology in both public discourse and clinical settings. Ukrainian physicians who work in OST programs frequently reference desire (желание) as the most significant factor in determining the success or failure of treatment. They refer to a desire to be treated, desire to get better, desire to live. The moralized imperative to possess this desire to get better is, in many ways, a reflection of how addiction and the addicted psyche is constructed and understood in the Ukrainian context. By exploring discourses of desire in narratives of addiction and treatment, I examine how notions of psychology, will, and self-control intersect, shaping the subjectivity, agency, and daily experiences of this vulnerable population.
While Russia has historically and geographically close ties with Islam, the second most-practiced religion in its vast territories, the collapse of the USSR changed the terms of this relationship in significant ways. One key shift is the emergence of new immigration patterns between Russia and former Soviet states. Traversing distant lands from the peripheries of the Caucasus and Central Asia to mainland Russia in search of work, migrants have come to recognize each other as fellow Muslims dispersed in a theological geography on the ruins of the universal comradeship dreamed by the Soviet utopia. I propose to study the Islamic pedagogical practice of ibra in the context of sociohistorical dynamics of education and migration between Russia and Central Asia to further locate and analyze this shift in relation to current debates on post-Soviet subjectivity. By discussing the case of a spirit possession of a Tajik national performed in Russia, I argue that the collective participation in the session pedagogically invokes, ciphers, and extends the post-Soviet terrains of history as ibra, or exemplary passage of worldly events. To do so, I first locate the Quranic concept of ibra as a pedagogical paradigm in Islamic traditions as well as an ethnographic lens in the context of educational campaigns for the Muslims of Eurasia and then apply the concept to my analysis of the possession session in order to show that in the ritualistic incarnations of ghosts, or jinns, the civil war of Tajikistan and its continuing cycle of terror is ciphered into a desire for learning, as well as a focus on approximation to the divine.
Namrita S. Singh, Nino Jakhaia, Nino Amonashvili, and Peter J. Winch
Trajectories of illness and recovery are ongoing and incomplete processes cocreated by individuals, their informal support networks, formal care-givers and treatment contexts, and broader social systems. This analysis presents two case histories of care-seeking for, and recovery from, mental illness and psychosocial problems in the context of protracted internal displacement. These case histories present individuals with experiences of schizophrenia and depression drawn from a sample of adult long-term internally displaced persons (IDPs) in Georgia, a country in the South Caucasus. Dimensions of care-seeking were compiled into a matrix for analysis. Interviews were open coded, and codes were linked with matrix dimensions to construct each case history. Findings illustrated that individuals moved cyclically among self-care, household support, lay care, and formal services domains to understand and manage their problems. Living with mental illness and within displacement are experiences that intersect at various points, including in the recognition and perceived causes of illness, stressors such as discrimination and isolation, the affordability and availability of services, and the capacity of social networks to provide informal care. Interventions are needed to support informal care-givers and build lay referral networks, as well as to identify intervention points within care-seeking processes. Interventions that target the mental health needs of displaced persons have the potential to contribute to the development of an innovative community mental health care system in Georgia.
This article explores apparent shifts in the cultural use of psychoanalytic concepts, from narcissism, through melancholia, to paranoia. It tries to track these shifts, very loosely, in relation to changes in sociocultural and political atmospheres, noting that none of the shifts are complete, that each one leaves previous states of being and of mind at least partially in place. Narcissism was perhaps the term of choice for examining the problem of forging relationships that feel meaningful in a context of rapid change and neo-liberal expansion; then melancholia was (and is) drawn on to conceptualise the challenge of confronting loss and colonial ‘theft’; and now the annexation of the polity – and of everyday life – by massively insidious surveillance produces a culture and subjecthood that is fundamentally, and understandably, paranoid
Aoileann Ní Mhurchú
This article thinks with reproduction (what Baraitser and Tyler call ‘natal thinking’ (2013, p. 3)) to conceptualise its role as both an empirical and theoretically rich site through which to further develop thinking about citizenship as fluid (in flux). Focusing on the mother-child (born and unborn) subject, the article considers the manner in which thinking with the cyclical and eternal time of reproduction reconfigures the possibility of political community and political identity through the idea of repetition which undoes at the same time as it repeats. The article reflects upon how actions by migrant mothers undo (exceed) at the same time as they repeat understandings about the role of inclusion (commonality) versus exclusion (otherness) in citizenship. It argues that such acts can be seen as that which invoke excess and otherness in political subjectivity as another starting point for/of political possibility rather than just as an exception.
This article aims to show how Fernand Deligny’s thought and practices with autistic children, as well as his impact on Deleuze and Guattari, offer a paradigm of subjectivity that in turn rests upon an aesthetic and political account of what we can shape and share in common with autistic people. Well known by French educators and followers of alternative psychiatry, Fernand Deligny remains quite unknown in English-speaking parts of academia (a first translation of some of his texts should be published in 2015) despite his influence on the work of Deleuze and Guattari. Nevertheless, Deligny’s proposals are of great interest for renewing how we think about subjectivity.
A major motivation for the rise of interest in subjectivity has been the failure of traditional theories of the person in predicting or explaining political affect. The failure may be attributed primarily to the inability of traditional theories to recognize and incorporate the collective and the temporal in their conceptualizations of human desire, experience and affect. While models of the collectively constituted subject have well replaced atomistic models of the individual, theories capable of temporal dislodgment of subjective experience are yet to gain a clear voice. Theoretic advances such as Raymond Williams’ structures of feeling, Derrida’s hauntology, or Abraham and Torok’s cryptonymy point the way to meaning based models of subjectivity that can accommodate multiplicities of both voices and temporalities in meaning and experience. A discussion of subjective experience as pantemporal is presented here specifically through an examination of metonymic and metaphoric functions as constituents of meaning and desire. Among other advantages, the pantemporality model is suggested to allow for analysis of such phenomena as intergenerational transmission of trauma and political affect.
Charlotte Ann Chopin
This article examines the cultural identifications of doctors of French origin working for the colonial medical service in Algeria at the end of the nineteenth century. As representatives of the state, doctors were expected to uphold the gendered values of civilisation which underpinned the French Third Republic and its empire. Yet they also formed part of a mixed European settler community which insisted upon its own racial and cultural specificity. Faced with a series of centralising reforms to the service from 1878, doctors tied their pursuit of professional freedom to a wider settler movement for autonomy. In so doing, they came to embody a self-proclaimed ‘new white race’ which sought to physically regenerate the empire. In tracing these doctors’ mediation between their governmental employers and their settler patients, this article exposes tensions within French medical culture in Algeria and reflects on the consequences for the operation of colonial power.
Carolyn Herbst Lewis
This article reconsiders the place of obstetrician Joseph Bolivar DeLee in the historical narrative. Often celebrated as a founding father of the profession, and denigrated as one of the leading proponents of instrumental childbirth, DeLee was not entirely the man historians and childbirth activists blame him for being. Rather than seeking to resolve the contradiction between DeLee’s widely cited professional writings and his lesser known practices, this article instead focuses on the broader tenure of DeLee’s career, particularly his ‘Gospel of Good Obstetrics’. Doing so permits us to see the efforts of a physician who spent nearly 50 years defending the advantages of home birth without anaesthesia and without instrumentation and who built institutions that provided Chicago mothers with these birthing experiences. This article also explores how DeLee envisioned his techniques and institutions as the basis for an obstetrics revolution in the United States.
Frederick J. White
Controlled organ donation after cardiac death (DCD) after awaiting cardiac arrest (Maastricht Category III) has been controversial since its formalisation in the Pittsburgh Protocol in 1992. Much of the controversy involves its abbreviated time to declaration of death by cardiocirculatory criteria and its departure from brain death in the required determination of death. Proponents assert that DCD is a renaissance of the earliest days of transplantation, before widespread acceptance of the concept of brain death. Equivalence between modern DCD and historic non-heartbeating organ donation is used to justify DCD practice and dismiss concerns that DCD may not meet the required determination of death. However, examination of the thoughts of transplantation pioneers regarding the required determination of death and examination of the facts and circumstances of their early transplantation cases reveals that moral equivalence drawn between modern DCD and the first organ transplants is not well founded in historical evidence.
Web Roundup: The Electronic Over-Soul and our Worst Selves (and Other Mishaps) by Sara M Bergstresser
The web roundup for this month is a sequel to last month’s roundup on Mind, Consciousness, and Artificial Intelligence. I will address another interface between machines and minds, at the “hive mind” or the collective buzz of the internet, and the ways in which human limitations can be transmitted to the artificial minds that we beget. (And this one is also a bit late, though in this case it is attributable to human error, rather than to technical difficulties.)
Recently, Microsoft created Tay, an AI “chatbot” to appeal to 18- to 24-year-olds in the US. Tay was conceptualized as a teenage girl and existed entirely in Twitter, and Twitter was the source of Tay’s cumulative “intelligence.” Therein lies the problem. Less than a day later, Tay was tweeting racist epithets, denying the Holocaust, and calling game developer Zoe Quinn a “Stupid Whore.” Tay also apparently took a liking to Donald Trump.
In 1841, Ralph Waldo Emerson described the Over-Soul as something divine, which can serve as a check on the baser human natures: “Meantime within man is the soul of the whole; the wise silence; the universal beauty, to which every part and particle is equally related; the eternal ONE.” In 2016, the Internet appears to have formed a profane version of the collective unconscious, and this electronic over-soul strays far from Emerson’s lofty vision of transcendence. The Verge asks: “how are we going to teach AI using public data without incorporating the worst traits of humanity?” On Next Nature Network: “If the Internet was a person, then Tay would be a manifestation of a repressed and hateful part of its personality.” For Emerson, “Man is a stream whose source is hidden. Our being is descending into us from we know not whence.” For Tay, knowledge was also passed down from a hidden stream in the ether. For a while. Then Microsoft pulled the plug.
But perhaps there is still cause for optimism for the future of human-robot-human interactions? There is a robot monk, who offers spirituality in the form of a cute toy. People recoiled when they watched a Boston Dynamics employee push Atlas the robot over (ostensibly to demonstrate its successful bipedalism). Is a bit more difficult to interpret the implications of this research study: “The findings showed that when participants were instructed to touch the robot in areas that people usually do not touch, like the eyes or the buttocks, they were more emotionally aroused when compared to touching more accessible parts like the hands and neck. Participants also were more hesitant to touch these intimate parts based on the response times.” And then, of course, we are reminded: “From Siri to sexbots: Female AI reinforces a toxic desire for passive, agreeable and easily dominated women.”
The Weasel in the Machine
Though our image of the future may be cast in shades robotic, unemotional, and rational, the present reminds us that the world is still plenty capable of providing unexpected mishaps. A few days ago the Large Hadron Collider, at one of the most expensive and sophisticated scientific facilities in the world, was shut down by a weasel. The Collider has also been foiled when a bird dropped a baguette into the electrical system.
I have in the past pondered the ways in which scientists deploy probabilistic language to simultaneously disavow and bracket the chance of mishap; let’s recall: “in 2008, scientists even conceded that there was some risk of the Large Hadron Collider destroying the world, though it was considered extremely unlikely.” I can’t help but wonder: this is how the world ends? Not with a bang, but with a weasel?
Additional examples of how things don’t always go as planned:
- My Ph.D. in Crack
- CV of failures: Princeton professor publishes résumé of his career lows (download it here)