Conference Report: Ludwik Fleck’s theory of thought styles and thought collectives – translations and receptions by Sandra Lang
Ludwik Fleck’s theory of thought styles and thought collectives – translations and receptions
March 10th – 11th 2016
Organizing committee: Paweł Jarnicki (Project Science Foundation and Ludwik Fleck Centre at Collegium Helveticum); Martina Schlünder (Ludwik Fleck Circle and Max Planck Institute for the History of Science); Ohad Parnes (Max Planck Institute for the History of Science); Rainer Egloff (Ludwik Fleck Centre at Collegium Helveticum) and Sandra Lang (Ludwik Fleck Centre at Collegium Helveticum and TU Munich Graduate School).
Introduction: Aims of the conference
When Ludwik Fleck published his book Entstehung und Entwicklung einer wissenschaftlichen Tatsache. Einführung in die Lehre vom Denkstil und Denkkollektiv in 1935, the initial reception did not extend beyond a handful of reviews. After Thomas Kuhn “re-discovered” Fleck and initiated the English translation (Genesis and Development of a Scientific Fact) with an international collective around Robert K. Merton in 1979, a broader reception slowly emerged in the English-speaking world. A German re-edition appeared in 1980. Further translations into Italian (1983), Polish (1986), Spanish (1986), Swedish (1997), Russian (1999), French (2005) and Portuguese (2010) followed. Fleck has grown popular, a fact the conference reported on here paid tribute to by historicizing and reflecting on various aspects and forms of his ideas, and their development in different languages and in distinct (inter-)national scholarly contexts. A central aim of the conference was to investigate the paths which the reception and translation of Ludwik Fleck’s works have taken and to elaborate issues to be aware of in future translations. The organizing committee was proud to welcome a large number of the translators and editors of Fleck’s work such as Nathalie Jas (French), Stefano Poggi (Italian), Mariana Camilo de Oliveira (Brasilian-Portuguese) and Mauro Condé, all of whom who offered first-hand insights to the circumstances and challenges connected to the processes of translation. In addition to the translations and reprints of Fleck’s works, scholars have developed empirical, theoretical, philosophical and historical applications for his ideas and a rich discourse has emerged around them. Today the largest collectives of Fleck scholarship are located in Brazil, the US and Europe (especially Poland, Germany, France and Switzerland); talks and commentaries by David Östlund, Paweł Jarnicki, Martina Schlünder, Mauro Condé, Sandra Lang and Rainer Egloff represented this range of discourses surrounding the reception of Fleck’s work. One aim of the discussion involved strategies for extending the reach of Fleck’s ideas into other countries and into disciplines beyond science studies and the history of medicine. Any translator of Fleck faces the difficulty of dealing with theoretical terms and of embedding the author in a broader philosophical context. These issues and the new theoretical questions that have emerged from recent translations were introduced by Katarzyna Gurczyńska-Sady, Hartmut von Sass, Ilana Löwy, Jadwiga Kamola and Nicholas Binney. Thanks to Sofiya Grachova, Artur Koterski and Avi Ohry, new insights into Fleck’s biography and historical context are available. Monika Milosavljević, and Wojciech Sady presented contributions on the contextual origins of Fleck’s ideas and on the benefits of applying them. Pit Arens showed how Fleck can be adopted by the arts.
Translating Fleck: challenges and new questions
The panel on translation issues was opened by David Östlund, who analyzed Bengt Lillequist’s 1997 Swedish translation of Entstehung. Östlund referred to the complex implications the translation of denken as a verb or respectively as a gerund. The Swedish translation struggled a lot with the distinction between att tänke (verb) and tanke (noun). Uppkomsten och utvecklingen av ett vetenskapligt faktum: Inledning till läran om tankestil och tankekollektiv was the final title, but Östlund found more analytical evidence for the verb form represented in tänkekollektiv, as Fleck also preferred the verb form in his English writings. He compared Fleck’s thoughts to some representatives of Anglophone intellectual history such as Quentin Skinner.
Nathalie Jas offered some interesting insights into the process of translating Fleck from German into French. In 2005 she finished the translation after three years, starting as a “non Fleck specialist and non professional translator”. The example of Jas may be seen as an inspiration for upcoming translations of Ludwik Fleck’s work in other languages. While many others had given up the project of translating Fleck into French, Jas spent years gathering background information by studying dictionaries, literature on Fleck, the interwar period and the history of medicine, all which resulted in a very successful translation.
Stefano Poggi, who translated Fleck’s work into Italian along with Maria Leonardi in 1983, spoke about Paolo Rossi, the initiator and publisher of Genesi e sviluppo di un fatto scientifico: per una teoría dello stile e del collettivo di pensiero. Poggi discussed the intentions motivating Rossi’s publication of Fleck’s work. During the 1960s and 1970s Italian philosophy of science experienced a paradigm shift connected to the influential works of Kuhn, Hanson, Lakatos, and Feyerabend. According to Poggi, Rossi was more critical of this “revolution” in epistemology and tried to strengthen the theoretical connection between Fleck and the Austro-German environment (especially the Vienna Circle) in which his thoughts had emerged.
The conference also provided a platform to discuss the translation of Entstehung from German into Brazilian Portuguese, which was realized in 2010 under the direction of Mauro Condé. Mariana Camilo de Oliveira, who translated Fleck’s text along with Georg Otte, remembered how they dealt with the challenges Fleck’s theoretical terms presented. Fleck’s neologisms, archaisms, terms from microbiology and self-references were very difficult to translate and the translators were aware that such subtleties would shape the perception of future readers. Camilo de Oliveira illustrated this with a variety of terms that represent those ambiguities very well, such as Lustseuche, Brustkorb, Lehre and of course the Denkstil.
As other contributors pointed out, such issues of translation have not always been treated so sensitively. Pawel Jarnicki, Rainer Egloff and Martina Schlünder presented linguistic, contextual and historical analyses of the English translation of Fleck’s works. Fleck’s bilingual legacy – he was bilingual in Polish and German, and he published in both languages – was not taken into account when Robert Merton and colleagues translated, edited and introduced the English version of Fleck’s monograph (published in 1979). The translation process proved stressful and took several years, as shown by Martina Schlünder, who analyzed the process of the English translation based on archival material from Robert Merton’s papers. Those papers document the complicated communication between the translators, editors (Merton, Trenn) and the author of the foreword, Thomas Kuhn. They complained of Fleck’s “difficult” (Kuhn) and “idiosyncratic” (Trenn, Merton) German and struggled with Fleck’s theoretical (e.g. active/passive Kopplung, Beharrungstendenz, Widerstandsaviso, Denkstil, Denkkollektiv) and medical terms just as Camilo de Oliveira’s team did. Schlünder concluded that the English translation decontextualized Fleck’s original in several ways. The translators and editors didn’t understand the hermeneutical strategies and the radical politics of the book (radical in terms of questioning the foundations of western philosophy by marginalizing and multiplying epistemology). These strategies were mainly embedded in the neologisms and the language (“funny German”) the editors misunderstood. Moreover, they didn’t understand or did not want to understand the book as an intervention against antisemitism and racism in Poland. Instead they de-historicized it and “improved” it to make connections to Kuhn and social constructivism.
Fleck himself did not self-translate but wrote his theory simultaneously in both German and Polish, as Jarnicki argued. There are therefore terms for which an equivalent in both languages can be found, and others (like Beharrungstendenz) that were only used in one. A comparative glossary of German and Polish terms can thus be used as a base for further translations into other languages. In the discussion, the dangers of misunderstanding terms and subsequently shaping receptions were raised. Is there a need for a new English translation? Is it important to “modernize” Fleck’s language? How can Fleck’s ideas be popularized – and should they be? In this context, Jan Surman emphasized the importance of reflecting on the mechanisms of book markets and which realities they construct by “domesticating” and “foreignizing” a text.
Applying Fleck: New discourses enriched by Fleckian theory
With a remarkable contribution from a Serbian perspective, Monika Milosavljević offered insights into the discourses of contemporary and historical Serbian archeology. A young research group founded the Centre for Theoretical Archeology in an attempt to connect different institutions and to overcome nationalist “proto-ideas” that hinder progress in archeological research. Recognizing a lack of theoretical concepts and an overemphasis on attributing “national” status to archeological findings, this group of scholars introduced the theory of Ludwik Fleck into their interpretations. Combined with other sociological and philosophical approaches, such as those of Karl Mannheim and actor network theory, these scholars are attempting to establish a less ideological and more epistemologically reflective style of archeology based on dialogue with discourses outside Serbian borders.
The debate between Tadeusz Bilikiewicz and Ludwik Fleck has often been widely investigated and discussed in the reception of Ludwik Fleck’s works. While Bilikiewicz’s philosophical contributions have been much-discussed, not much attention has been paid to his work on embryology during the baroque and rococo periods (Die Embryologie im Zeitalter des Barock und des Rokoko). Artur Koterski, a historian of philosophy of science, reconstructed and analyzed Bilikiewicz’s early research in history of medicine. He discussed different historical concepts of eggs, sperms and conception (e.g. Albrecht von Haller, Pierre Maupertuis, John Needham) and embedded them in the broader philosophical context of the corresponding epochs. In doing this, he argued that Bilikiewicz’s thought style can be characterized as a metaphysical, ontological, causal and epistemological realism.
Drawing on his research on the history of quantum physics in the 1920s, Wojciech Sady argued that Fleck’s epistemology does not go far enough to explain scientific revolutions. Sady’s case study dealt with the controversy between Max Planck and his followers. Planck, who already during his lifetime was celebrated as the father of quanta, did not himself believe in his scientific discoveries and the revolution he provoked. Indeed, at a 1912 congress organized in his honor Planck still attempted to convince the participants not to believe in quanta. This case study highlights an unexplored question in Fleckian theory and application: How do concepts held by individuals relate to those which appear in publications? Sady’s statement – “What cannot appear in an individual human mind – as mind is socially conditioned – can appear on paper” – provoked an enriching discussion that may lead to further epistemological reflections on Fleck’s theory and application in the history of science.
Pit Arens’s talk gave inspiring insights on his contribution as an artist to an exhibition on Ludwik Fleck. Conceptualized by the Ludwik Fleck Kreis and on display at Max Planck Institute for the History of Science in Berlin 2002 and at Collegium Helveticum in Zurich 2004, the exhibition-installation summed up the state of research on Fleck’s life and work at that time. Since the Zurich exhibition the Ludwik Fleck Center has been established at Collegium Helveticum.
Reception of Ludwik Fleck in different countries
The conference talks and discussions showed that the reception of Ludwik Fleck’s work has differed significantly between distinct cultural and linguistic settings. In Poland and other countries of central Europe Fleck is perhaps receiving the strongest theoretical and philosophical reception. Elsewhere, the history and philosophy of science and medicine have managed to find more empirical applications. As Paweł Jarnicki and Sandra Lang showed, Ludwik Fleck’s works are a very common topic of master’s theses and dissertations in Poland and Germany, especially in the humanities and social sciences connected to science, technology and medicine. In Brazil, as Mauro Condé pointed out, Fleck discourse is much more focused on developing applications and improving scientific practice by including epistemological reflections. Fleck’s ideas are often used in the fields of science education, history of science and medicine, sociology and philosophy. According to Mauro Condé Fleck fits very well into the Brazilian scientific landscape, which is just as diverse as Brazilian society in general. As Ilana Löwy put it in the following discussion, the connection between sciences, politics and social questions is very strong in contemporary Brazil, so that theoretical questions are much more related to future applications than they are in Central Europe and elsewhere, where theoretical reflections predominate. Fleck’s popularity in Brazil, linked to the applicability of his ideas and their encouragement of transdisciplinary connectivity, is yet more proof of his significance 80 years after his first book was published.
Among German speaking researchers a strong tendency for Fleck-based applications can also be observed, as Sandra Lang showed. Many marginalized thought collectives, especially in medicine, care and education studies, have found Fleck’s concept of the plurality of realities and social constitution of scientific facts highly emancipatory.
Historicizing and Fleck: unknown aspects of Fleck’s life
Sofiya Grachova investigated the Circle of Jewish Physicians in Lwów and which role Ludwik Fleck played during his time as its head (1937-1938). She shed light on the project of researching Fleck’s own biological and biochemical works, a project which remains largely unrealized. Based on newly gathered archival data from Lwów, Grachova was able to offer interesting insights into Fleck’s activities. In the frame of a campaign put on by the Society for the Protection of the Health of Jewish Population (TOZ), Fleck offered popular lectures to inform people about health risks and disease prevention. Such lectures were e.g. on “Love and Hate among Humans and Animals”, but also on immunology and serology such as the lecture series “The Mysteries of Blood”. According to Grachova this last lecture can be seen as a (critical) answer to the eugenics movement as well as to contemporary Polish ethno-national propaganda.
Besides Fleck’s activities in pre-war Lwów, the participants learned much about Fleck’s life in Israel and work at Nes Ziona during 1950s and 1960s. This was thanks to Avi Ohry, who had personally met with Fleck’s son, Ryszard (Arie) Fleck. According to Ohry, Ryszard Fleck and his wife had turned their apartment in Petach Tikva into a “shrine” to the memory of Ludwik Fleck. Ohry also reported on encounters with colleagues of Fleck at the Israel Institute for Biological Research such as Moshe Aharonson and Marek Klingberg. Moreover, Ohry gave a broad historical overview of Fleck’s own thought collective in Poland before, during and after the war.
Theories of translations and translating: inspired by Fleck
In discussing the various challenges of translating Fleck’s work it became apparent that not only scientific work but also the work of translators is highly collective. In addition to the translators themselves, the process involves an entire group of other actors, many from a more exoteric circle (e.g. publishers and editors), which raises problems of power. Referring to this, Ilana Löwy emphasized that communication—translation processes included—never occurs without transformation and remodeling. Löwy illustrated this argument with Fleck’s own style of working and thinking. Fleck himself can be seen as very mobile between diverse thought collectives. His “nomadic state” made it possible for him to think beyond the established borders of style. Fleck’s open, democratic, reflective and critical way of thinking about complex medical problems offers fruitful perspectives for public health.
Hartmut von Sass offered his reflections on transcendentalist and realist aspects of Fleck’s way of thinking. He claimed that Fleck can be seen a transcendentalist, even though not in the Kantian style, as the collective in Fleck can’t be understood as a transcendental ego. It exceeds the individual but is still not universal. Von Sass stated that Fleck’s notion of social and educational elements of science are evident in his term “learning to see,” which is close to Wittgenstein’s hermeneutic contextualism (“abrichten”). Such a philosophy of science is represented by Philip Gardner, as he assumes the construction of knowledge, but does not imply a demand for universalism. Another Kantian and Wittgensteinian approach to Fleck was represented by Katarzyna Gurczyńska-Sady, who reflected on the problem of anticipation in Fleckian theory.
Jadwiga Kamola analyzed the impact that Gestalt psychology had on the development of Fleck’s thought. By discussing the Fleckian term “Widerstandsaviso” and the processes of “learning to see”, she shed new light on Fleck’s philosophical and psychological thought on cognition in general, which was highly shaped by the Gestalt psychology of his times. The active and passive elements of knowledge in the development of scientific facts were discussed by Nicholas Binney. Based on a case study analyzing the medical and legal discussions on diagnostics of rickets and abusive head trauma in infants, he showed how important it is to put more empirical and philosophical emphasis on such Fleckian terms.
Some 80 years after Fleck published his Entstehung und Entwicklung einer wissenschaftlichen Tatsache he seems to be more popular than ever. By now his terms and theories have gained the status of a classic work in the history, sociology, and philosophy of science. A special role in the popularization of his works has been played by translations and the translators who produce them. Reflecting on the challenges of translating Fleck and remaining aware of the significance of Fleckian terminology may prepare the ground for further translations into other languages.
Sandra Lang graduated form University of Freiburg, Germany with a Master of Arts in sociology in 2014. She is currently completing her PhD project at the Collegium Helveticum located at the ETH Zürich and the Munich Center for Technology in Society (TU München). Her main research interests are sociology of science and medicine, science and technology studies, gender studies, theory and reception of Ludwik Fleck, bibliometrics and methodology of the qualitative social research program.
 The conference was organized by Project Science Foundation (as a part of the project Philological analysis of Ludwik Fleck’s Philosophical works and its translations into Polish, English and German funded by the Polish National Science Centre awarded on the basis of the decision number DEC-2012/06/M/HS2/00313; for a documentation of the project see: http://ludwikfleck.pl). It was also sponsored by the Ludwik Fleck Centre at Collegium Helveticum, MPIWG Max Planck Institute for the History of Science, and Ludwik Fleck Kreis.
 An online version can be found here http://www.ludwik-fleck-kreis.org/index.php?pageid=32.
Here are some articles published in June that may be of interest. Enjoy!
Cancer graphic narratives, I argue, are part of a medical imaginary that includes representations of difference and biomedical technology that engage Fassin’s (2009) concept of biolegitimacy. Framed in three parts, the argument first draws on discourses about cancer graphic narratives from graphic medicine scholars and authors to demonstrate a construction of universal suffering. Second, I examine tropes of hope and difference as a biotechnical embrace. Finally, I consider biosociality within the context of this imaginary and the construction of a meaningful life. Autobiographical graphic narrative as a creative genre that seeks to give voice to individual illness experiences in the context of biomedicine raises anthropological questions about the interplay between the ordinary and biolegitmate. Cancer graphic narratives deconstruct the big events to demonstrate the ordinary ways that a life constructed as different becomes valued through access to medical technologies.
Some North American hospitals now offer parents the opportunity to see, hold, and photograph fetal remains after pregnancy loss. I explore the social, material, and interpretive strategies mobilized to create this fetal visibility after second trimester–induced abortion for fetal anomaly. My analysis examines both the discursive framing of fetal remains in practice guidelines on pregnancy loss and the responses of a group of Canadian women to being offered “time with babe.” I show that while guidelines tend to frame contact with fetal remains as a response to women’s desires to see their baby and to feel like mothers, women’s experiences of this contact were shaped by more diverse wishes and concerns as well as by specific abortion practices and practitioner comments and actions.
This article examines how amplified fetal heartbeats may be used to make claims about fetuses’ social presence. These claims are supported by the Mexican Public Health system’s selection of the maternal–child relationship as a key site of clinical intervention, intertwining medical and moral discourses. Drawing on the robust literature on cross-cultural propositions of “fetal personhood,” this analysis uses ethnographic material from public health institutions in Oaxaca, Mexico, to explore how doctors use diagnostic technology to materialize fetuses for their patients. I argue that Spanish’s epistemological distinction between saber (to have knowledge about) and conocer (to be acquainted with) is key to how diagnostic technologies may be deployed to make social claims. I use one doctor’s attempts to use technology to shift her patient from saber to conocer as illustrative of underlying cultural logics about fetal embodiment and its proof. Focused on the under-theorized socio–medical deployment of audio fetal heartbeat technology, this article suggests that sound—in addition to sight—is a potent tool for constructing fetal personhood.
Incertitude, Hepatitis B, and Infant Vaccination in West and Central Africa
Tamara Giles-Vernick, Abdoulaye Traoré, Louis Bainilago
This comparative study explores incertitude about hepatitis B (HBV) and its implications for childhood vaccination in Bangui, Central African Republic, and the Cascades region, Burkina Faso. Anthropological approaches to vaccination, which counter stereotypes of “ignorant” publics needing education to accept vaccination, excavate alternative ways of knowing about illness and vaccination. We build on these approaches, evaluating different kinds of incertitude (ambiguity, uncertainty, ignorance) about infancy, HBV, health protection, and vaccination. Using interviews and participant observation, we find that Bangui and Cascades publics framed their incertitude differently through stories of infancy, illness, and protection. We locate different forms of incertitude within their historical contexts to illuminate why vaccination practices differ in the Cascades region and Bangui. A more nuanced approach to incomplete knowledge, situated in political, economic, and social histories of the state and vaccination, can contribute to more appropriate global health strategies to improve HBV prevention.
Hymenoplasty is a controversial surgery in Iran, where a woman’s failure to present herself as virginal for marriage may result in severe social repercussions. Critical literature surrounding this clandestine surgery is sparse. During ethnographic fieldwork in Tehran, I interviewed women who have and have not undergone hymenoplasty and physicians who perform it. Using a Foucauldian framework, I argue that the medicalization of virginity is a form of female social control in Iran. The resulting narratives and discourses suggest that hymenoplasty is a covert form of resistance against socioculturally prescribed sexual inegalitarianism that restricts women to the social sphere of premarital chastity. By manipulating the medicalization of virginity, women inadvertently resist dichotomous gendered classifications that constrain them as either the deviant woman who has premarital sex or the normal woman who remains virginal until marriage. These women deviate from a fixed notion of gender embodiment, eroding socioculturally constituted categorical boundary markers regarding femininity.
This article is based on an ethnographic study of prenatal screening for Down syndrome in two British health care institutions. Drawing on observations of everyday hospital life and interviews with health care professionals, I identify how a discussion of Down syndrome is avoided during prenatal screening consultations. This relative silence is created and upheld because of three things: (1) the British public is considered as knowing what Down syndrome is; (2) the organization of care dictates that the condition is not classified as important enough to justify an explanation within consultations; and (3) professionals frequently admit to having minimal knowledge of Down syndrome. This absence, together with the condition being categorized as a risk or problem, helps produce and uphold its status as a negative pregnancy outcome. I conclude by highlighting the contributions that this article has for anthropologically exploring how ideas around disability intersect with the proliferation of reproductive technologies.
Culture and the Immune System: Cultural Consonance in Social Support and C-reactive Protein in Urban Brazil
William W. Dressler, Mauro C. Balieiro, Rosane P. Ribeiro, José Ernesto dos Santos
In this article, we examine the distribution of a marker of immune system stimulation—C-reactive protein—in urban Brazil. Social relationships are associated with immunostimulation, and we argue that cultural dimensions of social support, assessed by cultural consonance, are important in this process. Cultural consonance is the degree to which individuals, in their own beliefs and behaviors, approximate shared cultural models. A measure of cultural consonance in social support, based on a cultural consensus analysis regarding sources and patterns of social support in Brazil, was developed. In a survey of 258 persons, the association of cultural consonance in social support and C-reactive protein was examined, controlling for age, sex, body mass index, low-density lipoprotein cholesterol, depressive symptoms, and a social network index. Lower cultural consonance in social support was associated with higher C-reactive protein. Implications of these results for future research are discussed.
In this review essay, I explore the implications of renewed anthropological interest in materiality and the cultures that emerge from interaction among humans, nonhuman agents, and the material environment. Drawing upon sociocultural anthropology published primarily in 2015, I focus on five themes: cultures as emergent; bureaucracies in contemporary life; science, measurement, and state policy; affect and emotion in daily life; and multispecies and interspecies studies. Overall, the works I review illustrate the strength of anthropology in rendering visible the contradictions, trade-offs, and unlikely connections of lived experience in a material world. The works also show how cultures become real through people’s actions and interactions with others. Nevertheless, sociocultural anthropology continues to face two enduring contradictions: first, attention to inequalities and disadvantages caused by existing structures versus an emphasis on the emergence and consequent unpredictability of social forms, and second, a view of humans as significant causal agents who can harm the natural world versus a perspective that sees humans as influenced by complex environments that include nature, nonhuman living beings, and inanimate objects.
[excerpt] Many of medical anthropology’s leading lights are currently lamenting the undervalued place of ethnographic work in public health and medicine. Vincanne Adams argues that in the field of global health, demands for randomized, controlled studies have become an “empirical tyranny” (Adams 2010:48). João Biehl and Adriana Petryna assert that “ethnographic evidence consistently dies within the dominant conceptual paradigms of global health” (Biehl and Petryna 2013:16). This argument seems incomplete to us. Based on our experience publishing and collaborating with health professionals in two very different arenas—global polio eradication and veteran-oriented health services research—we have come to believe that anthropologists now have an unprecedented opportunity to contribute to the creation of clinical and public health structures more deeply informed by core anthropological concerns. Anthropological theory has a powerful grasp of the connection between broad-scale social structures and intimate lived realities, and its methods are perhaps unequaled in capturing the nuances of context. But making the most of anthropology’s particular strengths will require overcoming a series of challenges,particularly in how we as anthropologists communicate with other health professionals. In this commentary, we first discuss our observations on anthropology’s unique value in con-temporary health research and practice and then offer a few suggestions for how to make the most of our contributions.Ultimately, we contend that making sure that anthropology has a place at the table with public health and medicine will require a new reflexivity, a careful examination of the biases and conventions of our discipline.
The normalisation of body gifting in Taiwan
The Tzu Chi Foundation has made body gifting, such as body donation, bone marrow donation and cord blood donation, successful in Taiwan. Using Foucault’s theoretical framework of governmentality and normalisation, this article discusses how a Buddhist charity, the Tzu Chi Foundation, normalises body gifting in Taiwan through their campaigns, system and philosophy. It argues that Buddhist discourses of karma create a ‘benefit-all altruism’ in body gifting. Furthermore, the emergence of the Tzu Chi Foundation in the last five decades has been a process of discipline and norm construction. The Tzu Chi Foundation, with its comprehensive missions, builds up an extensive network to spread their philosophy in different fields, from environmental protection and humanity education to medical care. The practice-oriented and community-based volunteer system helps the ‘giving’ ideology take root in the communities in Taiwan. Finally, through the media and the Internet, the effect goes beyond the institutional boundaries and reaches the public.
Vaccine resistances reconsidered: Vaccine skeptics and the Jenny McCarthy effect
Samantha D Gottlieb
Recent data and increased vaccine-preventable disease outbreaks suggest that a growing number of US parents choose not to vaccinate their children. Popular media have responded to this phenomenon by emphasizing refusers’ moral failings and irrational fears. This article explores vaccine skeptics’ objections and argues that their critics miss fundamental reasons for resistances. Drawing on ethnographic research with a community of vaccine skeptics in southern California, a consideration of a leading vaccine researcher’s responses to vaccine critics and an analysis of Jenny McCarthy’s condemnation of current vaccine practices, this research considers why even parents who have accepted some vaccines, but not all, distrust vaccines and their proponents. Parents’ skepticism merits new forms of engagement by physicians and other vaccine advocates. As with any health intervention, vaccines can present some risks to a small number of recipients; when public health and clinical messages minimize parents’ fears, they may increase parental doubt. The voices of parents who choose to opt out of or to alter the normal vaccine schedule reveal important expressions of biomedical resistance.
The Research Domain Criteria (RDoC) project is an ambitious new initiative by the National Institute of Mental Health that aims to comprehensively redefine mental illnesses as problems of neurogenetic ‘circuitry’. This essay explores potential implications of this nascent approach. Drawing on data from two studies that examine the diagnosis of autism spectrum disorder, itself recently reconceptualized along lines similar to this new diagnostic paradigm, I argue that such ‘circuit disorders’ differ from their predecessors in two significant ways. First, while psychiatric disease entities under the previous paradigm were understood as fundamentally separable from the affected person, circuit disorders are bound up in intimate neuropsychological processes such as memory, perception and desire; they are thus often experienced as constitutive of identity by those living under their description. Second, rather than being limited to matters of ‘clinically significant impairment’, circuit disorders are multivalent, encompassing valued as well as devalued traits. Given that one major aim of the RDoC is to allow for pre-emptive biomedical intervention upon pre-symptomatic states, these emergent qualities of circuit disorders raise complex ethical concerns. I conclude by illustrating the way these concerns become obscured in the transition to an ostensibly value-neutral biophysiological paradigm.
“You’re not just a paid monkey reading slides”: How key opinion leaders explain and justify their work
Sergio Sismondo, Zdenka Chloubova
Key opinion leaders (KOLs) are physicians and researchers engaged by pharmaceutical companies, most often to speak to audiences of other physicians. This article provides some background information on the structures of pharmaceutical company influence on and control over KOLs. The primary focus of this article, though, is on KOLs’ explanations and justifications of their paid work for the companies, on the basis of, among other sources, 13 interviews with high-earning KOLs. Among KOLs’ important justifications are ones in terms of the educational value of the talks they give and the benefits gained by patients; these are buttressed by claims about the integrity of the speakers. However, those justifications rarely address pharmaceutical companies’ use of KOLs, or larger issues to do with the general influence that pharmaceutical companies have on medical knowledge.
Local biologicals and the politics of standardization: Making ethical pluripotent stem cells in the United Kingdom and Japan (open access)
Koichi Mikami, Neil Stephens
In 2003, the United Kingdom and Japan had adopted relatively similar approaches to human embryonic stem cells science. The decade since has witnessed significant divergence in their national policies as differing responses to ethical questions about research use of human embryos emerged. The United Kingdom pursued a vision of ‘institutionally accredited stem cells’ by reconfiguring the role of the Human Fertilisation and Embryology Authority and establishing the UK Stem Cell Bank. In contrast, Japan followed a vision of ‘technically advanced stem cells’ by developing induced pluripotent stem cells and supporting its research programs enthusiastically. Our research – drawing upon extensive fieldwork in both countries – demonstrates the socio-technical arrangements developed to instantiate these visions and articulates their divergence while at the same time revealing their connectedness. This relationship becomes progressively evident as the two visions face each other in the politics of standardization in global stem cell science. Drawing on Franklin’s concept of local/global biological, we discuss the connectedness of the two local arrangements. In so doing, we explicate the future challenges for both countries as they need to demonstrate the significance of their visions in this global enterprise, while the success of one would likely undermine the significance of the other.
Mental health courts (MHCs) are a response to the structural violence experienced by people with severe mental illness (SMI) involved in the criminal justice system. My ethnographic research of an MHC in urban Canada serves as the foundation for a discussion of court processes that are an example of biopower. The purpose of this article is to demonstrate how strategies for intervention in the name of life and health, truth discourses and forms of self-governance operate among criminal justice-involved individuals with SMI. This study reveals the tensions between the intense forensic gaze and invisibility and between treatment strategies that are beneficial for some people with SMI yet ultimately coercive and oppressive. The governance of this population is discussed, as well as what happens to people who fail or refuse to self-govern as the court compels them.
This issue of BioSocieties also has a Book Forum about recent literature on the so-called obesity epidemic. The forum is introduced by Nicolas Langlitz here: Biosociological weight watching: From European famines to Guatemalan love handles (open access).
Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control
Elly Teman, Tsipy Ivry, Heela Goren
Studies on reproductive technologies often examine women’s reproductive lives in terms of choice and control. Drawing on 48 accounts of procreative experiences of religiously devout Jewish women in Israel and the US, we examine their attitudes, understandings and experiences of pregnancy, reproductive technologies and prenatal testing. We suggest that the concept of hishtadlut—”obligatory effort”—works as an explanatory model that organizes Haredi women’s reproductive careers and their negotiations of reproductive technologies. As an elastic category with negotiable and dynamic boundaries, hishtadlut gives ultra-orthodox Jewish women room for effort without the assumption of control; it allows them to exercise discretion in relation to medical issues without framing their efforts in terms of individual choice. Haredi women hold themselves responsible for making their obligatory effort and not for pregnancy outcomes. We suggest that an alternative paradigm to autonomous choice and control emerges from cosmological orders where reproductive duties constitute “obligatory choices.”
Disability Studies Quarterly (Open Access)
Being Disoriented: Uncertain Encounters with Disability (open access)
Ryan C. Parrey
Disorienting encounter with disability are those in which the meaning of disability is an open question, and in which our relation to it is questionable. This essay explores the relationship between disability and disorientation on conceptual but also concrete levels. First, I examine the connection between disability and disorientation within disability studies. Second, I provide a preliminary sketch of disorientation through what I call ontic disruption and ontological disorientation. Third, I take up Leder’s (1990) articulation of bodily disappearance and embodied dysappearance to address ableist violence. Finally, I develop the notion of dysorientation — a prolonged, persistent or recurrent sense of disorientation — as a useful concept for understanding experiences of ableism but also as a significant meeting point between impairment and disability.
Beyond the Feeble Mind: Foregrounding the Personhood of Inmates with Significant Intellectual Disabilities in the Era of Institutionalization (open access)
Holly Allen, Erin Fuller
This essay explores the experiences of persons with significant intellectual disabilities at the Vermont State School for Feebleminded Children (later Brandon Training School) in the period 1915-1960. We discuss the limits of existing histories of intellectual disability in accounting for the distinct experiences of significantly intellectually disabled people. This essay works to correct the tendency to define the nominal intellectual disability of “morons” and “borderline” cases—both in the past and in disability historiography of the past—against the abject, embodied difference of the “low-grade idiot” or “imbecile.” The history we offer has implications for the present-day disability rights movement.
Implementing universal design in a Norwegian context: Balancing core values and practical priorities (open access)
Inger Marie Lid
How can urban planning processes include perspectives from people with disabilities? This paper discusses the implementation of universal design (UD) and accessibility in a local urban context. Universal design consists of both core values, such as inclusion and equal status, and specific design initiatives, such as design of pavement surfaces and benches. The aim of implementing universal designing strategies is to achieve equal access for all citizens. The paper interprets the urbanist Henri Lefebvre’s notion of the right to the city as a right to participate in urban life and thus a dimension of equal citizenship on a very concrete level. The right to participate in urban life is closely linked to access to the built environment. Based on an empirical study of an urban redesign project, I argue that equal access must imply both access to public places and to political processes.
Explanation not Excuse: Attention Deficit Disorder, Collegiality and Coalition (open access)
David P. Terry
This ethnopoetic essay performs some of the professional, interpersonal and political challenges presented by ADHD and some of the ways in which non-visible disabilities intersect with other axes of privilege and accessibility.
“I’m stronger than I thought”: Native women reconnecting to body, health, and place
Katie Schultz, Karina L. Walters, Ramona Beltran, Sandy Stroud, Michelle Johnson-Jennings
This community-based research applied principles of wilderness experience programming and Indigenous knowledges in an exploratory intervention designed to address health disparities in a tribal community. Drawing on historical trauma frameworks, tribal members rewalked the Trail of Tears to consider its effect on contemporary tribal health. Qualitative data from tribal members suggest that engagement with place and experiential learning, particularly the physical and emotional challenge of the Trail, facilitated changes in health beliefs, attitudes, and behaviors. Deep engagement outside of traditional health service settings should be considered in interventions and may be particularly effective in promoting positive health behaviors in Native communities.
Both scientific and popular discourses assume that the environment can exert an influence on human health. Drawing on anthropological research conducted alongside mental health activists in the United Kingdom, I discuss how people affected by mental health problems sought to recover by visiting outdoor places in the London Borough of Richmond. Their intentional movement and stillness in the world involved tuning and narrative orientation, which, over time, became skilled. Recovery from mental ill-health was not an outcome of merely being in a particular place, but rather emerged as an ongoing process of relearning how to live in and as part of the environment.
Drawing on fieldwork in Chiang Mai during 2010 and 2012, I examine poor Thais’ and Shan migrants’ experiences of receiving healthcare from a public hospital, and, in parallel, care from the state. While universal health coverage has become a way in which the state finds legitimacy in people’s lives through giving care, being a recipient of state aid is implicated in the emotive domain of waiting. By focusing on how people feel and think of a gift and debt of care, I suggest that flows of affects that loom large in social interactions within the public hospital denote not only poor people’s subordinate position but also their effort to achieve a sense of mutuality and moral autonomy. This study contributes to a broader understanding of experiences of paternalism, inequality, and dependence by illuminating people’s agentive submission into relations of care.
Gastroenvironmental distress: metaphorical antecedents of the gut microbiome
Nitin K Ahuja, Amisha Ahuja
The human gut has been viewed for centuries as a potential mediator of systemic disease. The theory of autointoxication, which found its clearest articulation in the late nineteenth and early twentieth centuries, focused on altered bowel habits as the cause of widespread physical decay and advocated for the pursuit of health through regular defecation. More recently, under the banner of the microbiome, research on commensal bacteria makes a similar case for associations between alimentary dynamics and illness manifestations far outside the gastrointestinal tract. Surface distinctions between these two conceptual frameworks are apparently antipodal, the former championing emptiness and sterility, the latter abundance and restoration. Within both models, however, persists a common anxiety about the detrimental effects of civilisation on the body in relation to the natural world. As scientific understanding of the microbiome continues to mature, acknowledging the historical and moral parameters of its borrowed ecological idiom may facilitate critical distinctions between what is true and what feels like it should be.
Empathy and affect: what can empathied bodies do?
George Robert Ellison Marshall, Claire Hooker
While there has been much interest in the apparent benefits of empathy in improving outcomes of medical care, there is continuing concern over the philosophical nature of empathy. We suggest that part of the difficulty in coming to terms with empathy is due to the modernist dichotomies that have structured Western medical discourse, such that doctor and patient, knower and known, cognitive and emotional, subject and object are situated in oppositional terms, with the result that such accounts cannot coherently encompass an emotional doctor, or a patient as knower, or empathy as other than a possession or a trait. This paper explores what, by contrast, a radical critique of the Cartesian world view, in the form of a Deleuzean theoretical framework, would open up in new perspectives on empathy. We extend the framework of emotional geography to ask what happens when people are affected by empathy. We suggest that doctors and patients might be more productively understood as embodied subjects that are configured in their capacities by how they are affected by singular ‘events’ of empathy. We sketch out how the Deleuzean framework would make sense of these contentions and identify some possible implications for medical education and practice.
The anonymity paradox in patient engagement: reputation, risk and web-based public feedback
Ewen Speed, Charlie Davison, Caroline Gunnell
The UK National Health Service (NHS) has long espoused patient and public engagement. Recent years have seen increasing use of internet-based methods of collecting feedback about patient experience and public and staff views about NHS services and priorities. Often hailed as a means of facilitating participative democratic patient engagement, these processes raise a number of complex issues. A key aspect of it is the opportunity for comment to be made anonymously. Our research reveals an anonymity paradox whereby patients clearly demonstrate a perception that anonymity is a prerequisite for effective use of these feedback processes, whereas professionals demonstrate a perception that patient anonymity is a barrier to effective use. The risks of anonymity are constructed very differently by patients and professionals. Patient concerns around anonymity were not motivated by a general concern about a loss of privacy, but more that a positive identification might compromise future care. For professionals, concerns were voiced more around risks of reputational damage for specific practitioners or practices (in that anyone could say anything) and also that this anonymous feedback was available publicly and that it might go against the medical opinion of the professional. These concerns pointed to important differences in perceptions of patient and professional vulnerability. In the qualitative analysis that follows the key finding was that while anonymity makes service users feel less vulnerable, it can have the opposite effect on managers and clinical staff. This raises important implications for the use and utility of internet-based methods of collecting patient feedback.
Smallpox inoculation was introduced in Europe in the early eighteenth century and has been considered the first mass treatment of disease based on practical use of probability calculations and mathematical tools of computation. The article argues that these new approaches were deeply entangled with other rationalities, most emphatically that of exemplarity. Changes in inoculation methods around mid-century gradually changed the conceptualization of disease, seeing all cases as fundamentally equal, and thus making it more relevant to count them. Arithmetic changed the ways of thinking about smallpox epidemics, but new ways of conceptualizing disease were vital to making it a matter of arithmetic at all. The article investigates what happened when numbers and figures were introduced into medical matters: Who did the figures really concern, and what types of argument were they fitted into? How were numbers transformed into metaphors, and how did quantitative argument work together with arguments from exemplarity?
Patient education as a status passage in life – An ethnographic study exploring participation in a Danish group based patient education programme
Tine Mechlenborg Kristiansen, Rasmus Antoft
In this paper, we apply the theory of status passage to the empirical field of group-based patient education. On the basis of ethnographic fieldwork carried out in the context of a local Danish patient education programme aimed at people diagnosed with rheumatoid arthritis, we illustrate how participation in the programme for the recently diagnosed is a regularised status passage symbolising a transition in life from a novice to a more experienced person with chronic illness. We demonstrate how central properties of status passage are at play and how they are shaped by interactions among the different agents: participants, lay experts and health professionals. We highlight how the unique biographical situation of the individual and the individual timing of participation is an important factor affecting whether the patient education programme succeeds in regularising the status passage. We highlight the ambiguity of the role of the health professionals in directing the status passage of the recently diagnosed. On one hand, health professionals empowered the participants by giving them access to professional knowledge and guidance and thereby supporting the status passage. On the other hand, the effort to direct responsibility back to the participants did not consider individual biographical situations, and thereby risked leaving the participants frustrated and unable to pass. Further, we point to the special significance of the socialising process between the participants, with the recently diagnosed being the novices asking questions and seeking guidance and the lay experts and the experienced participants taking the role of coaches, guiding the recently diagnosed managing the status passage into chronic illness.
In countries throughout sub-Saharan Africa, antiretroviral therapy is seen as the solution to not only treat existing patients, but also to prevent the future spread of HIV. New policies for the prevention of mother-to-child transmission place women on lifelong treatment as soon as they are tested HIV positive. This article looks at how women understand this prescription for lifelong treatment. Drawing on interviews with HIV-positive women in Lilongwe, Malawi (N = 65) during July–September 2014, I examine the process of making treatment decisions, and why – despite increased access – women refuse or stop treatment. Using treatment for preventative purposes transforms the experience of HIV from an acute to a chronic condition where both the symptoms of disease and the efficacy of treatment are unclear. Women look for evidence of the cost and benefit of treatment through their personal experiences with illness and drug-taking. For some women, the benefits were clearer: they interpreted past illnesses as signs of HIV infection, and felt healthier and more economically productive afterwards. For others, taking treatment sometimes led to marital problems, and side effects made them feel worse and disrupted their ability to work. While women understand the health benefits of antiretroviral therapy, taking treatment does not always make sense in their present circumstances when there are costly physical and economic repercussions. This study builds on existing sociological research on medical decision-making by situating decisions in a broader political economy of changing HIV policies, economic conditions, and everyday uncertainty.
Fostering reflective trust between mothers and community health nurses to improve the effectiveness of health and nutrition efforts: An ethnographic study in Ghana, West Africa
Nana M. Ackatia-Armah, Nii Antiaye Addy, Shibani Ghosh, Laurette Dubé
As the global health agenda shifts from the Millennium Development Goals (MDGs) to Sustainable Development Goals (SDGs), the need for effective preventive health efforts has gained prominence, particularly in low-income regions with poor health and nutrition outcomes. To address needs in communities with limited access to health services and personnel, it is important to develop strategies that can improve the effectiveness of nurses as they interact with the populations they serve. We contribute to informing such strategies by explaining how mothers’ “reflective trust” in community health nurses develops as a key influencer in their health-related decision-making and behavior. Between December 2012 and June 2013, our ethnographic study gathered data in three adjacent rural and semi-rural communities in Ghana’s Eastern Region, using interviews with 39 nursing mothers, three focus groups – with mothers, health-workers, and community leaders – as well as 941 h of participant observation. We focused on interactions between mothers and nurses, highlighting tensions between communities’ traditions and messages that nurses bring, which are often based on modern science. We also investigated how mothers come to exhibit reflective trust in the nurses to make sense of traditional and scientific knowledge on infant feeding, and integrate them into their own feeding decisions. Our findings have global implications for effectively sustaining and scaling health and nutrition efforts through community approaches.
After geneticization (open access)
The concept of geneticization belongs to a style of thinking within the social sciences that refers to wide-ranging processes and consequences of genetic knowledge. Lippman’s original use of the term was political, anticipating the onerous consequences of genetic reductionism and determinism, while more recent engagements emphasise the productivity and heterogeneity of genetic concepts, practices and technologies. This paper reconstructs the geneticization concept, tracing it back to early political critiques of medicine. The argument is made that geneticization belongs to a style of constructionist thinking that obscures and exaggerates the essentializing effects of genetic knowledge. Following Hacking’s advice, we need a more literal sense of construction in terms of ‘assembly’ to give a clearer account of the relationship between processes and products. Using the ‘assemblage’ concept to explore the social ontology of genetics, the paper reviews three areas of the empirical literature on geneticization – disease classification, clinical practice and biosociality – to show that a new style of thinking has appeared within the social sciences. In the final assessment, the conditions that gave rise to geneticization are now obsolete. While it may serve as a useful ritual of debate, conceptually geneticization offers a limited account of the heterogeneity of socio-technical change.
Understanding global health and development partnerships: Perspectives from African and global health system professionals
Amy Barnes, Garrett W. Brown, Sophie Harman
Partnership is a key idea in current debates about global health and development assistance, yet little is known about what partnership means to those who are responsible for operationalising it or how it is experienced in practice. This is particularly the case in the context of African health systems. This paper explores how health professionals working in global health hubs and the health systems of South Africa, Tanzania and Zambia understand and experience partnership. Drawing on semi-structured interviews with 101 professionals based in each country, Washington DC and Geneva between October 2012 and June 2013, the paper makes four key arguments. First, partnership has a legitimating function in global health policy processes for international development institutions, government agencies and civil society organisations alike. Second, the practice of partnership generates idiosyncratic and complicated relationships that health professionals have to manage and navigate, often informally. Third, partnership is shaped by historical legacies, critical events, and independent consultants. Fourth, despite being an accepted part of global health policy, there is little shared understanding of what good partnership is meant to include or resemble in practice. Knowing more about the specific socio-cultural and political dynamics of partnership in different health system contexts is critical to equip health professionals with the skills to build the informal relations that are essential to effective partnership engagement.
In this article I discuss the definition of “the Antivaccine Movement” using the case of the French controversy over the safety of the 2009 pandemic flu vaccine. I show that the group of main actors who criticized the vaccine’s safety is heterogeneous. This heterogeneity can be found in the type of arguments mobilized to question the vaccine’s safety and in these actors’ likelihood of being involved in any vaccine-related controversies. I show that only a minority of these actors rejected vaccination in general and mobilized against all vaccination campaigns. Most of these actors only occasionally mobilized against a given vaccine or vaccination campaign and they did so to promote a political or cultural agenda that went beyond the vaccine itself. Using these results, I argue that in order to better understand how vaccine-related controversies emerge and why some activists devote time and resources to spread vaccine-critical arguments, social scientists should use three distinct concepts to refer to vaccine criticism: The Antivaccine Movement, the Marginally Antivaccine Movements and the Occasionally Vaccine Critical Movements. To do so would enable social scientists and public health experts to better understand the different ways in which vaccination can become politicized and the evolution of this politicization.
The doctor-patient relationship as a toolkit for uncertain clinical decisions
Medical uncertainty is a well-recognized problem in healthcare, yet how doctors make decisions in the face of uncertainty remains to be understood. This article draws on interdisciplinary literature on uncertainty and physician decision-making to examine a specific physician response to uncertainty: using the doctor-patient relationship as a toolkit. Additionally, I ask what happens to this process when the doctor-patient relationship becomes fragmented. I answer these questions by examining obstetrician-gynecologists’ narratives regarding how they make decisions when faced with uncertainty in childbirth. Between 2013 and 2014, I performed 21 semi-structured interviews with obstetricians in the United States. Obstetricians were selected to maximize variation in relevant physician, hospital, and practice characteristics. I began with grounded theory and moved to analytical coding of themes in relation to relevant literature. My analysis renders it evident that some physicians use the doctor-patient relationship as a toolkit for dealing with uncertainty. I analyze how this process varies for physicians in different models of care by comparing doctors’ experiences in models with continuous versus fragmented doctor-patient relationships. My key findings are that obstetricians in both models appealed to the ideal of patient-centered decision-making to cope with uncertain decisions, but in practice physicians in fragmented care faced a number of challenges to using the doctor-patient relationship as a toolkit for decision-making. These challenges led to additional uncertainties and in some cases to poor outcomes for doctors and/or patients; they also raised concerns about the reproduction of inequality. Thus organization of care delivery mitigates the efficacy of doctors’ use of the doctor-patient relationship toolkit for uncertain decisions. These findings have implications for theorizing about decision-making under conditions of medical uncertainty, for understanding how the doctor-patient relationship and model of care affect physician decision-making, and for forming policy on the optimal structure of medical work.
Attending to the material discursive constructions of the patient body within cone beam computed tomography (CBCT) imaging in radiotherapy treatments, in this paper I describe how bodies and machines co-create images. Using an analytical framework inspired by Science and Technology Studies and Feminist Technoscience, I describe the interplay between machines and bodies and the implications of materialities and agency. I argue that patients’ bodies play a part in producing scans within acceptable limits of machines as set out through organisational arrangements. In doing so I argue that bodies are fabricated into the order of work prescribed and embedded within and around the CBCT system, becoming, not only the subject of resulting images, but part of that image. The scan is not therefore a representation of a passive subject (a body) but co-produced by the work of practitioners and patients who actively control (and contort) and discipline their body according to protocols and instructions and the CBCT system. In this way I suggest they are ‘con-forming’ the CBCT image. A Virtual Abstract of this paper can be found at: https://youtu.be/qysCcBGuNSM.
Between disruption and continuity: challenges in maintaining the ‘biographical we’ when caring for a partner with a severe, chronic illness
Gunvor Aasbø, Kari Nyheim Solbrække, Ellen Kristvik, Anne Werner
Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose ‘biographical we’ as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.
Social inclusion and the Fatosphere: the role of an online weblogging community in fostering social inclusion
Marissa Dickins, Colette Browning, Susan Feldman, Samantha Thomas
Overweight and obesity are one of the most salient issues within society today, and the stigmatisation of overweight individuals is prevalent and widespread. Utilising interviews with 44 individuals who blog within an online fat acceptance community known as the Fatosphere, participants’ perceptions of inclusion and exclusion were examined within their offline and online environments. Additionally, the effect this had on their offline lives was examined. Participants described a profound sense of exclusion within their offline lives through three agencies: the medicalisation of ‘fatness’, the weight loss industry and the media, which echoed descriptions of moral judgement. Furthermore, a sense of inclusion was described within the Fatosphere through the protection and support that they found within this ‘safe space’. The effects of the Fatosphere influenced their lives in both negative and positive ways, allowing them to better deal with stigma and discrimination, but sometimes effecting their offline relationships in a negative manner. The Fatosphere provides a unique opportunity for corpulent individuals to engage in a community that is removed from the prominent weight-related discourse within modern society.
‘Coz football is what we all have’: masculinities, practice, performance and effervescence in a gender-sensitised weight-loss and healthy living programme for men (open access)
Christopher Bunn, Sally Wyke, Cindy M. Gray, Alice Maclean, Kate Hunt
In this paper we use a social practice approach to explore men’s experience of Football Fans in Training (FFIT), a group-based weight management programme for men that harnesses men’s symbolic attachment to professional football clubs to engage them in lifestyle change. FFIT is delivered by community coaches in clubs’ stadia and is gender-sensitised in relation to context, content and style of delivery. Using a ‘toolkit’ of concepts from the work of Bourdieu, Goffman and Durkheim we analysed data from 13 focus group discussions with participants, and fieldwork notes from programme observations to investigate the appeal and success of FFIT, and how it worked to support change. Our analysis builds on our work on the importance of shared symbolic commitment to the football club and being with ‘men like me’ to understand how the interaction context facilitated ‘effervescent’ experiences. These experiences encouraged men to make changes to their diet and physical activity, talk about them, practice performing them and implement them in their lives. Thus a social practice approach illuminated the social processes through which lifestyle change was achieved, and we argue that it can deepen and enrich both intervention design and evaluation.
Early Elegy: Smallpox
by Claudia Emerson
- The world has certified itself rid of
- all but the argument: to eradicate or not
- the small stock of variola frozen,
- quarantined—a dormancy it has
- refused, just once, for a woman behind a sterile
- lens, her glass slide a clearest, most
- becoming pane. How could it resist slipping
- away with her, that discrete first pock?
In 1979, public health officials announced the eradication of smallpox. This achievement was more than just an impressive demonstration of mass vaccination. It represented the ability of nations locked in a frigid Cold War to unite against a common enemy. From this point on smallpox became a prisoner of war, held hostage in the laboratory freezer or, to be more specific: two laboratory freezers. In 1984 the World Health Organization decided that only two entities could provide sufficient security to maintain freezers filled with scabs and cells that harbored smallpox: a Siberian lab called Vector in Novosibirsk and the other at the CDC in Atlanta.
The decision to allow two superpowers, the USSR and the US, to stockpile microbes as well as missiles provided cold comfort to experts concerned about germ warfare. Not only was there concern that one nation might choose to deploy smallpox as a weapon of mass destruction, there was also fear that the very idea that smallpox had been contained in two freezers was itself a fiction.
In 1987, virologist Frank Fenner asked members of the World Health Assembly to entertain the various ways in which smallpox could still reemerge to wreak havoc on humankind. This included the possibility that it might still be spread by itinerant Chinese variolators (China had only joined the WHO in 1972), that it could be harbored by an animal reservoir, that it might be released through a laboratory accident, or that a rogue scientist could sell it on the black market. Fenner’s recommendation to mitigate these hypothetical risks by destroying the remaining samples preserved in Soviet and American freezers was denied.
Since then, the eradication of smallpox has often been championed as a potent example of the ability of humans to gain control over nature. It has also become the source of speculative narratives about the hubris of such a vision. These narratives are unique examples of what I call biomedicine futures: speculative visions about what will be that blur the line between the possible and the actual, the rational and the irrational in ways that produce potential truths that exert a tangible impact on the present.
If practices of cryopreservation enabled the creation of repositories of the end of particular infectious epidemics, the co-production of fictional and scientific narratives have contributed to maintaining them. These narratives can be found in flow charts and planning documents as well as the reports of science writers, from Richard Preston’s 2002 best-selling account of bioweapons development Demon In the Freezer, to novels like Nelson DeMille’s 1997 Plum Island, which used the eponymous high-security government biorepository as the setting for a thriller.
Priscilla Wald, in her work on the “outbreak narrative” has argued that popular and fictional accounts of epidemics have served as a way to educate the public about the threat and science of deadly infections. Citing Michael Crichton’s Andromeda Strain, she also points out that fictional accounts of outbreaks do more than reflect and convey the lessons of science; they also supply some of the most common points of reference, which influence social transformation and disease emergence in their own right. This includes her documentation of the fact that Nobel Laureate and anti-germ warfare crusader Joshua Lederberg leaked the Ebola story to Preston. Decades earlier, Lederberg communicated about germ warfare with Michael Crichton upon the publication of the Andromeda Strain. When Crichton died in 2008, it was Preston who was asked to complete his novel Micro, a fictional critique of a corrupt bioprospecting enterprise.
In the case of smallpox, such narratives or hidden dialogues have informed the perpetual deferral of the destruction of the final “official” or symbolic specimens of the Cold War standoff. Even after Cold War tensions thawed, these two collections of smallpox remained in a state of suspended animation, renewing the logic of Cold War while generating still new apocalyptic anxieties. Take a recent example. In the summer of 2014 NIH scientists discovered six vials in a freezer in Bethesda that were subsequently confirmed as containing smallpox DNA. Soon after, the BBC examined fears that climate change could lead to the release of smallpox that had been inadvertently preserved in nature’s freezer, the arctic permafrost.
The specters of these twin threats of smallpox infection—one emerging from an improperly managed artificial frozen environment and the other from a natural environment transformed through human activity—were tamed by recourse to science fiction. Michael Lane of the CDC, who previously worked on smallpox eradication programs from 1970 to 1981, was not worried. He told one news outlet, “No one feels there’s a serious chance that global warming will melt the permafrost and unleash an epidemic.” While “no one” in Lane’s orbit at CDC may have be willing to go on record to admit climate change as a legitimate risk, the article in which he was quoted paired his succinct assertion with a cascade of speculation.
BUT: what an amazing plot possibility for a future biomedical thriller, as thawing corpses in the global north unleash waves of weird infectious terror on the people of the present day. Perhaps an oil exploration crew or a small group of archaeologists—or a few urban explorers, best friends taking a quick summer vacation to some ruined villages in the forest—find rotten body parts emerging from the mud and, unbeknownst to them, bring this virus back home to the city. It could be the plot of 28 Years Later.
Like something out of Jeff Long’s airport thriller Year Zero—in which an ancient virus is accidentally released from a vial of Jesus Christ’s own holy blood, leading to a global catastrophe—viruses once thought conquered emerge from the ice once again, virulent, unstoppable, and coming soon to a film screen near you.
Such narratives of both scientific speculation and science fiction colonize the present in ways that prepare their readers for the radical uncertainty of the future. The laboratory freezer gives officials only the illusion of control over the ultimate fate of smallpox. The best efforts at “planned hindsight,” the ability to view the present as a future past, will always involve the simultaneous conjuring and containment of fiction and fantasy.
The interplay of these speculative visions scramble the ability to distinguish fact from fiction, producing new kinds of risks from old, cold substrates. As a result, these freezers—both artificial and naturally-occurring—are made to incubate an end that is not yet over.
Joanna Radin is Assistant Professor of History of Science and Medicine at Yale, where she is also a member of the Section for the History of Medicine and Departments of History and Anthropology. Her research and writing focus on biomedical futures and the human life sciences since World War II. She is currently completing a monograph, forthcoming with University of Chicago Press, on the uses of cryopreservation in Cold War-era biomedical research.
[For this installment of the Top of the Heap series, I spoke with Anna Waldstein, who is an ecological anthropologist and lecturer in medical anthropology and ethnobotany at Kent University, UK.]
In response to discussions with my colleagues about ways to encourage our students to read more ethnographies, I designed a new assignment for “Anthropology of Health, Illness and Medicine,” the last time I taught it. Students were asked to read an ethnographic study with a medical anthropology theme (i.e. a “medical ethnography”) and to present a synopsis to their seminar group. My ulterior motive was to encourage students to read some of the medical ethnographies at the top of my heap, so that I could at least learn more about them, if I could not get around to reading them myself. In this respect, the assignment was only partially successful. The books at the top of my list were either not selected by any of the students, or were read by students in the seminar groups led by my colleague. However, several books that were (originally) much closer to the bottom of the heap (and some not even on the list of recommended ethnographies) generated memorable class discussions and have piqued my interest.
As I am getting ready to send my publisher the final version of my own forthcoming book on the “Hispanic health paradox” and “health sovereignty” in the United States, Gálvez’s (2011) Patient Citizens, Immigrant Mothers: Mexican Women, Public Prenatal Care, and the Birth-weight Paradox is at the top of the heap of books that I need to finish reading. The book explores reasons why Mexicans migrants living in the United States might have better maternal health outcomes than do American women, using ethnographic data on experiences of prenatal care in rural Mexico and New York City.
I actually wasn’t too surprised that no one selected Annemarie Mol’s (2003) The Body Multiple: Ontology in Medical Practice for the assignment. Although I have read various sections, I am intimidated enough by the two-texts-in-one format to have put off reading the book in its entirety. Nevertheless it is relevant to some of the recent thinking I have been doing about embodiment and I know that I will need to give it a proper read soon. MacPhee’s 2003 paper Medicine for the Heart: The Embodiment of Faith in Morocco, introduces a concept of the spiritual body that has been particularly relevant to my own recent work on the embodiment of Rastafari spirituality. I am especially looking forward to reading her 2012 book Vulnerability and the Art of Protection: Embodiment and Health Care in Moroccan Households.
While I didn’t see any presentations of MacPhee’s book, one of the students in my postgraduate seminar did present Sylvia Wing Önder’s 2007 We Have No Microbes Here: Healing Practices in a Turkish Black Sea Village, another medical ethnography on Islamic women. Many of the things the women of this patient-centered ethnography do for their families (provide home remedies and first-aid, pursue health care from outside the family when needed) sound similar to the things I have seen women do in my own work with Mexican migrants in the United States (and are no doubt similar to such things done by women all over the world). Since the student gifted me his copy of the book I really have no excuse not to read it.
For some reason fasting came up as a recurring theme in several meetings of the postgraduate seminar. So when one of the students presented Warin’s (2009) Abject Relations: Everyday Worlds of Anorexia the discussion that followed was set within this context. This book sounds like a refreshing new approach to understanding anorexia as a disorder of embodiment and social relations, more than an obsession with beauty, self-control and autonomy. Using an ethnographic approach it explores the “pro-ana” phenomenon, among other issues. One aspect of the book that particularly interests me is the use of bodily experience as a research method; apparently Warin’s pregnancy during the fieldwork enabled her to gain some sort of empathetic understanding of the embodied experience of anorectics.
One book that I will have to add to the list of recommended ethnographies (and my own personal heap) next year is João Biehl’s (2005) Vita: Life in a Zone of Social Abandonment, which was presented by another postgraduate student. I am as intrigued to learn more about the book’s apparently innovative methodological approach and ethnographic presentation as I am anxious to know more about its subject matter of what happens to the homeless and mentally ill in Brazil. Finally, although it’s not exactly a medical ethnography and therefore not on the list of recommendations I give my students, there is one more book that I would really like to read: Pedersen’s (2011) Not Quite Shamans: Spirit Worlds and Political Lives in Northern Mongolia. This book is about what happens to uncontrolled shamanic powers when state forces attempt to eradicate shamanism, and appeals to my interests in both spirituality and the effects of political forces on well-being.
Anna Waldstein is an ecological anthropologist with research and teaching interests in medical anthropology and ethnobotany. She is a lecturer and deputy Director for Taught Programmes, Anthropology; Programme Convenor for MA, MSc Environmental Anthropology; Programme Convenor for MA Social Anthropology at Kent University, UK. Her doctoral research focused on women’s popular medical knowledge and self-care practices in both indigenous and mestizo communities in Mexico and among Mexican migrants in the Southeastern United States. Recently, she has begun looking more closely at political dimensions of medicinal plant use and the historical relationship between medicine and social control. Her interest in popular medicine, herbal remedies, diaspora and biological citizenship have led her to the study of Rastafari livity (a Rasta word that refers to lifestyle and spirituality) and healing.
Image: Book Pile
Adia Benton and Sa’ed Atshan have edited a special issue of Culture, Medicine, and Psychiatry called The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. Here are the abstracts of the articles in this timely collection.
“Even War has Rules”: On Medical Neutrality and Legitimate Non-violence (open access)
Adia Benton, Sa’ed Atshan
[excerpt] This special issue is the result of a two-day symposium held at Brown University, which was co-sponsored by the Watson Institute, the Humanities Initiative and the Department of Anthropology at Brown University and the Science, Religion and Culture Program at Harvard Divinity School in May 2014. It broadly addresses the challenges that political conflicts pose to the practice of medical neutrality and impartiality by mostly local clinicians under conditions of state-sponsored and intrastate violence. The speakers at the symposium worked in places as diverse as the US, Sierra Leone, Mozambique, Pakistan, Egypt, Somalia, Israel/Palestine and Turkey. Although they represent a small sample of what was presented during the symposium, the papers in this issue contain ethnographic case studies that address the everyday negotiations of medical neutrality in times of crisis and kin concepts: global health diplomacy and humanitarian medicine. Together these papers highlight the conflicts, tensions and solidarities that politicize clinical spaces and clinical practice.
In this introduction, we will outline three themes that emerge in this set of papers, rather than providing a case-by-case summary of their contents. Together, the papers demonstrate that, as integral members of the communities in which they live and practice, doctors and other health workers are always positioned socially and politically. Medical ethics and international norms hold that medicine should be practiced impartially in situations of conflict, and that health care workers and patients be immune from attack. Medical neutrality—in these two senses of the term—is understood to be a universal moral norm, upheld in international law. Yet insights from medical anthropologists working in conflict-affected settings suggest that addressing social, political and institutional conditions shaping the possibilities of neutrality are a necessary first step, without which appeals to moral or even legal norms are not only insufficient, but may also be counterproductive.
Using data collected over nearly three years of ethnographic fieldwork in the Gilgit-Baltistan region of northern Pakistan, my paper explores hospital spaces, clinical services and treatment encounters as conduits for the expression and propagation of conflictive Shia-Sunni sectarianism. Where my prior research has investigated the political etiologies (Hamdy in Am Ethnol 35(4):553–569, 2008) associated with Gilgiti women’s experiences of childbirth during ‘tensions’, as Shia-Sunni hostilities are locally known, this paper focuses on healthcare providers’ professional and personal navigations of an episode of conflict whose epicentre was at the District Headquarter Hospital, Gilgit-Baltistan’s foremost government hospital. Through critical evaluation of the impacts of Shia-Sunni tensions on the social, administrative and clinical practices and consequences of medicine, my paper analyses the complex ways that clinics in crisis serve as zones of contact (Pratt in Profession 91:33–40, 1991) and abandonment (Biehl in Soc Text 68(19):131–149, 2001; Subjectivity: ethnographic investigations, 2007), in which neglect and harm are directed along lines of sectarian affiliation to produce vulnerability, spectacular violence and death for healthcare providers and patients.
Drawing on ethnographic research with Somalis, within aid organizations, and within health care facilities in the Somali Region of Ethiopia, this article argues that what is called “global health diplomacy,” despite its origins and articulations in interstate politics, is fundamentally local and interpersonal. As evidence, I outline two very different health programs in the Somali Region of Ethiopia, and how, in each, existing animosities and political grievances were either reinforced or undermined. I argue that the provision of health care in politically insecure and post-conflict settings like the Somali Region of Ethiopia is precarious but pivotal: medical encounters have the potential to either worsen the conditions in which conflicts and crises recur, or build new interpersonal and governmental relations of trust. Effective global health diplomacy, therefore, cannot be limited to building clinics and donating medicine, but must also explicitly include building positive relationships of trust between oppositional groups within clinical spaces.
During the 2013 Gezi protests in Turkey, volunteering health professionals provided on-site medical assistance to protesters faced with police violence characterized by the extensive use of riot control agents. This led to a government crackdown on the medical community and the criminalization of “unauthorized” first aid amidst international criticisms over violations of medical neutrality. Drawing from ethnographic observations, in-depth interviews with health care professionals, and archival research, this article ethnographically analyzes the polarized encounter between the Turkish government and medical professionals aligned with social protest. I demonstrate how the context of “atmospheric violence”—the extensive use of riot control agents like tear gas—brings about new politico-ethical spaces and dilemmas for healthcare professionals. I then analyze how Turkish health professionals framed their provision of health services to protestors in the language of medical humanitarianism, and how the state dismissed their claims to humanitarian neutrality by criminalizing emergency care. Exploring the vexed role that health workers and medical organizations played in the Gezi protests and the consequent political contestations over doctors’ ethical, professional, and political responsibilities, this article examines challenges to medical humanitarianism and neutrality at times of social protest in and beyond the Middle East.
Egypt’s Popular Uprising and the Stakes of Medical Neutrality
Sherine F. Hamdy, Soha Bayoumi
Amidst the recent political uprisings in the Arab region, physicians and other healthcare workers have found themselves in the crossfire. This paper focuses on Egypt’s doctors, paying special attention to how many have both appealed to and practiced medical neutrality as its own potent and contested political stance, particularly since the period of military rule following Mubarak’s removal from power. Our paper draws on interviews with physicians who served as volunteers in the field hospitals in the days of unrest and violence, and with others who played a major role in documenting protesters’ injuries, police brutality, and other forms of state violence against unarmed citizens. Based on interviews with doctors who belong to organizations such as “Tahrir Doctors” and “Doctors Without Rights,” our paper reveals how these doctors’ commitment to professional ethics put them at odds with the orders of military personnel, rendering their appeal to “medical neutrality” a weighty political act in and of itself.
This paper follows the testimony of Izzeldin Abuelaish, a Palestinian physician who bears witness to his experiences working, living, and suffering under Israeli rule. He presents his story as a doctor’s story, drawing on his identity as a medical professional to gain credibility and visibility and to challenge the limited legitimacy of Palestinian grievances. In this paper, I explore his testimony as a medical voice that at once recounts the suffering and loss endured by the Palestinian people and also struggles to negotiate the values associated with being a “reliable” witness. Consequently, I ethnographically examine the social life and reception of his story in Jewish-Israeli publics. In comparison with most Palestinian narratives, Abuelaish’s testimony achieved an extremely rare degree of visibility and sympathy, a phenomenon that calls out for analysis. I identify the boundaries that typically render Palestinian grievances invisible to Israeli publics and suggest how medicine’s self-proclaimed ethos of neutrality served as a channel for crossing them. Finally, I reflect on the political possibilities and limitations of medical witnessing to render suffering visible and arouse compassion toward those construed as a dangerous/enemy Other.
Clinic in Crisis Response: Imagined Immunities (open access)
Columbia University Press, 2014. 208 pages.
Flight Ways begins with a question: at what moment should a species be categorized as extinct? The extinction of Passenger Pigeons, for instance, could – in the most technical terms – be marked with the passing of the final bird, Martha. Little connection seems to exist, however, between the pigeons as they moved ‘through the sky in flocks of hundreds of millions of birds that blocked out the sun’ (11) and Martha’s isolated death in 1914. This prolonged period, between endangerment and the death of the last member of a species, is described by van Dooren as the ‘dull edge of extinction’: a period of time that sees, even as individual life forms exist, a break-down in the distinct form of life that characterises what it meant to be a particular species (11). Flight Ways engages in an ‘ethics of storytelling’ (9) which seeks to make the lives of five species of bird who currently live on this ‘dull edge’ visible: Albatrosses in the North Pacific, Vultures in India, a pocket of Little Penguins inhabiting Sydney harbour, Whooping Cranes in a U.S. breeding programme and, finally, Hawaiian Crows.
What needs to be emphasised is that this book has resonance far beyond its subject matter and – though it will clearly be of interest to those working within the Environmental Humanities or Animal Studies – Flight Ways is an important book that deserves a far wider audience. At the same time as presenting the stories of its birds in an evocative and politically urgent way, van Dooren manages to strike a delicate balance between theoretical innovation and accessibility. The book makes an incisive conceptual intervention into prominent cultural theories (vital materialist approaches, cosmopolitics, companion species) in a way that has broader resonance; it also engages with these theories in a lively way that would make them accessible to new audiences. Though perhaps not as explicitly ambitious as other contemporary texts that share the aim of crafting an entirely new ethics for the Anthropocene (e.g. Lorimer, 2015; Tsing, 2015), where Flight Ways stands out is in presenting its arguments in a way that enacts the ethics that it does put forward. The level of detail in van Dooren’s stories, moreover, give weight to his attempts to advance this body of theoretical work by asking how – once the entanglement between human and non-human is acknowledged – a meaningful politics can emerge. While we felt certain claims made in the book could use further interrogation, our overwhelming response is positive; here, therefore, we focus on Flight Ways’ strengths in terms of how it elaborates upon and extends existing work.
Theoretical elaborations: Entangled flight ways
Building on recent scholarship that has drawn vital materialism together with a focus on temporality (e.g. Bastian, 2013), Flight Ways foregrounds the need to develop a richer account of extinction, which takes into account the longer histories and future potentials of species, as well as their co-constitutive entanglement with their environment. The concept of the flight way itself helps to advance this body of theory through articulating the complex relationship between a species’ unique form of life, and the life forms who are members of that species. Through his detailed account of the precarious lives of albatrosses, for instance, van Dooren makes explicit how individual birds embody the immense amount of ‘intergenerational work: the skill, commitment, cooperation and hard work, alongside serendipity, that are required in each generation to carry the species through’ (27). The flight way, by extension, conveys what is lost when human activity – in this instance the plastics that converge in the ‘North Pacific Garbage Patch’ and ‘find their ways into albatross bellies’ (30) – disrupts both the lives of specific creatures and millennia of inter-generational learning.
Narratives about the entanglement of birds, humans, ecological contexts and temporalities are made still more explicit in van Dooren’s focus on vultures. The notion of entanglement derived from Barad (2007) has been engaged with by a large and ever-expanding number of texts across the environmental humanities and beyond; van Dooren’s story of vultures, however, does not just apply entanglement as a conceptual framework but gives this framework material weight. The story of Gyps Vultures in India makes explicit how the cultural and biological co-produce one another to forge complex lived ecologies. ‘Puller’ varieties of vulture, for instance, have historically thrived in India due to cattle from particular communities being left rather than consumed, and their bodies processed in ways that lent themselves to the birds’ particular needs (50). The use of the agricultural drug diclofenac, however, has led to an almost total extinction of the vultures. Given to cattle to overcome a number of issues like ‘lameness, mastitis, difficult birthing’ (53), the widespread use of the drug is tightly bound with high levels of poverty and the need to ‘keep animals working even when they are old and sick’ (53). The widespread loss of vultures due to diclofenac poisoning has, in turn, had stark implications for the flourishing of the human communities whose everyday life was entangled with vulture flight ways (although other communities, such as wild dogs, rats, and potentially even anthrax microbes, have been able to thrive in this new environment).
It is in this chapter in particular that Flight Ways displays its distinct capacity to both further conceptual debates, whilst acting as an accessible introduction to contemporary cultural theory. The chapter would be highly valuable to anyone seeking to grasp how Baradian notions of intra-action work in practice, or what it really means to claim that epistemologies, ontologies and ethics are irreducibly entangled. More than this, the chapter moves beyond the – now almost mundane – assertion that ‘everything is entangled’ to look at the specific, local forms of knotting and unknotting that are bound up with a species’ flight way.
Theoretical interventions: Theorising the violence of care
Perhaps the most decisive conceptual intervention is made, however, in van Dooren’s work on Whooping Cranes: a striking ethnographic case in itself, but one that also has implications for contemporary work about the politics of care in more-than-human worlds (e.g. Despret, 2004, 2013; Haraway, 2008; Puig de la Bellacasa, 2011). The cover of Flight Ways depicts a scene from this chapter, a biplane flying through the air teaching juvenile whooping cranes their traditional migration routes. The lengths that those engaged with this conservation project go to in order to save these endangered birds are extraordinary and frequently moving. What van Dooren also foregrounds, however, is the violence that is intrinsic to the care-work of conservation; indeed perhaps the most radical part of the book is the hyphen with which he links violence and care, in making clear that these processes – like the vultures and humans in chapter 2 – are irrevocably entangled.
At the core of this chapter is the assertion that: ‘Intimate care for some feathered bodies, some species, sits alongside the domination, coercion, and abandonment of others…’ (92). Care for the endurance of the species is clearly at the forefront of conservation work, with certain birds receiving incredibly patient care and attention to ensure they can not only survive but inherit the intergenerational flight ways of their predecessors. To facilitate this care, however, other species face more violent consequences: other – less endangered – crane species are used to incubate Whooping Crane eggs; quails serve as tasters to ensure the safety of crane food; geese and swans are used to see whether aircraft led migration is safe or feasible (114-5). Even particular whooping cranes adopt a ‘sacrificial’ role for the sake of their species and effectively become sperm banks for artificial insemination programmes, with these birds often being made to imprint on human handlers to make them less distressed about their physical manipulation for this end (111).
This conceptualisation of violent-care unsettles some of the pre-existing theoretical claims that have been made about the value of affective encounters in generating care and ethical responsibility towards individual animals (for an overview and related argument see Giraud and Hollin, 2016). Van Dooren elucidates how relationships between carers and birds – which have been praised in influential theoretical work (e.g. Despret, 2004) – is often the result of imprinting, ‘in which one partner knowingly manipulated the delicate developmental stages of the other to produce a lifelong attachment: a captive form of life’ (103, emphasis in original). This rich ethnographic material offers insights that go beyond being striking to verge on shocking; understanding imprinting as being part of a ‘regime of violent care’ offers a radical challenge, in particular, to Despret’s reading of Konrad Lorenz’s relationships with his animals as being co-shaping and convivial. This chapter is thus at the forefront of an emerging body of work that seeks to explore the ‘darker’ (Martin, Myers and Viseu, 2015) and more instrumental (Giraud and Hollin, 2016) side of care.
A final story
If it hasn’t already been made explicit, we felt this was a very valuable book that makes an important (and affective) intervention in existing conceptual debates. It is also, however, one that has potential to act in the way that van Dooren hopes, through enriching understandings of extinction and loss. This is perhaps reflected by a story we were told when reading van Dooren’s text. A work colleague spotted Flight Ways and took particular interest in the second chapter, describing how vultures were very much part of his own childhood in India as he played cricket under the watchful eye of the birds as they perched on the roof of his friend’s house. Whilst the children sometimes felt daunted by these large creatures, as they grew up and these striking companion species gradually vanished from sight, the vultures’ loss was felt and its cultural ramifications understood. Flight Ways’ strength is in its capacity to draw out the conceptual and environmental significance of moments such as this, in ways that hold the lives and temporalities of both individual birds and the intergenerational work of the species in view.
Barad K (2007) Meeting the Universe Halfway. Durham and New York: Duke.
Bastian M (2013) Political apologies and the question of a ‘shared time’ in the Australian context. Theory, Culture & Society. 30(5): 94-121.
Despret V (2004) The body we care for: Figures of anthropo-zoo-genesis. Body & Society, 10: 111–134.
Despret V (2013) Responding bodies and partial affinities in human-animal worlds. Theory, Culture & Society 30(7-8): 51–76.
Giraud E & Hollin GJ (2016) Care, laboratory beagles and affective utopia. Theory, Culture & Society. Epub ahead of print, 13 January 2016. DOI: 10.1177/0263276415619685
Haraway D (2008) When Species Meet. Minneapolis: University of Minnesota Press.
Martin A, Myers N, Viseu A (2015) The politics of care in technoscience. Social Studies of Science. 45(5): 625-641.
Puig de la Bellacasa M (2011) Matters of care in technoscience: Assembling neglected things. Social Studies of Science 41(1): 85–106.
Tsing AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins. Princeton & Oxford: Princeton University Press.
Storage and stockpiling as techniques of preparedness: Managing the bottlenecks of flu pandemics by Frédéric Keck
In the last twenty years, influenza has been considered by global health experts as a model for the emergence of new pathogens from animal reservoirs. In the logic of zoonoses, human disease is the tip of the iceberg constituted by a wide circulation of viruses – often asymptomatic – in animals; it is often described as an “evolutionary dead-end”. As the influenza virus is composed of a single-stranded segmented RNA, it mutates and reassorts between birds and pigs before spreading to humans and causing pandemics. The regularity of flu pandemics – 1918, 1957, 1968, 2009 – is explained by that the fact that the seasonal flu is replaced regularly by new flu viruses to which humans have no immunity. Consequently, to prepare for the emergence of new flu viruses, events whose probability cannot be calculated but whose consequences are catastrophic, samples have been stored and vaccines have been stockpiled, as if the iceberg of the animal reservoir could be visualized and controlled in the fridges where humans conserve live and attenuated viruses. Storage allows public health authorities to identify a new virus as it emerges by comparison with circulating viruses, and then to raise alarm from this early warning signal. Stockpiling provides a quick immunization of the population considered as having priority in the exposure to the new virus.
I am interested in storage and stockpiling as techniques to plan and visualize the mutations of flu viruses in the ordinary work of global health, in contrast with the extraordinary management of health crises. While stamping out the animal reservoir and vaccinating the human population are techniques used during the emergence of new flu viruses, storing samples and stockpiling vaccines is practiced before and after the emergence, as part of ordinary surveillance work. I want to describe these techniques of preparedness as modalities of accumulation of life – or biovalue – but also as modes of relations between humans and animals. To do this, I argue, we must be attentive to the representation of scarcity as bottlenecks: the emergence of a new virus is a rare event that presents new threats but also creates new possibilities for action. How do storage and stockpiling help global health experts to visualize and manage bottlenecks in the mutations of flu viruses? And what kinds of relations does it produce between humans and animals besides the model of eradication?
This question, unexpectedly, comes from the world of museums, in which I have worked for the last two years after several years observing avian influenza experts. I want to suggest that in the case of influenza, epidemics play the same role for global health institutions as exhibitions for museums: they are periods of time during which relations between humans and non-humans are exposed to the public before returning to the ordinary work through which they are stored. Before and after the outbreaks, microbiologists continue sampling and storing influenza strains, in the same way as curators in a museum continue acquiring and storing artefacts when there is no exhibition.
In 1948, the World Health Organization created a centre for the storage of influenza strains collected by national laboratories. It declared: “The desiccated viruses received by the Centre, will, as far as possible, be tested to determine their activity and, where appropriate, passaged to form a larger stock of desiccated material. It will thus constitute a sort of “museum” of desiccated strains of influenza. All laboratories that conduct research on the antigenic relations between strains may request the Centre to be kept informed of available strains and obtain the sending of a particular strain. We will periodically submit the museum strains – or at least those of them which seem to be important and representative – to passages in eggs or others to maintain stocks and avoid losses”. The goal of the WHO in 1948 was to centralize and standardize viral information independently from the occurrence of epidemics, and to produce the most adequate vaccine for the next seasonal and pandemic influenza viruses. Just as a museum does with exhibitions, the WHO would anticipate the next epidemic as an opportunity to display the knowledge it acquired on its collection of viruses.
One of the questions in the history of influenza research is what has changed since this dream of a total archive of flu strains was expressed by WHO. I argue that the shift from storage to stockpiling in labs and museums is one of the ways to capture this change. It is not only a shift in the numbers of actors of surveillance – as pharmaceutical industries entered the field of influenza research in the 1980’s due to a shortcut in the WHU budget – but also in the modes of visibility of pathogens circulating between animals and humans.
Two main events produced this shift, one concerning storage and the second stockpiling. At the end of the 1960’s, Graeme Laver and Robert Webster were walking along a beach in Canberra, where they were doing their PhD on influenza antibodies, when they saw dead seabirds on the shore. After joking that they had died from flu, they launched a massive program of trapping and sampling seabirds in the Great Barrier Reef to survey the patterns of Influenza A in birds. Martin Kaplan, a veterinarian who was the head of the WHO zoonoses program in Geneva, gave them funding for this research, which opposed the skepticism of Australian authorities. Webster and Laver imposed this bizarre idea that aquatic birds, despite their beautiful appearance, could be the reservoir of influenza, meaning that they carry the virus without being sick and shed it massively via fecal drops. Webster spent the rest of his career building a massive virus bank in the private hospital of St Jude in Memphis (Tennessee), where he could follow the mutations of flu strains in a large spectrum of species. Webster’s innovation was not only in the use of private and international funding to bypass national boundaries, but also in the modes of visualization of flu strains, from hemaglutination in eggs – the technique designed by his mentor Franck Macfarlane Burnet – to mutations in wild bird reservoirs.
Webster thus turned a black hole of surveillance into an abundance of information. In the 1970’s, China didn’t collaborate with the WHO in sending flu strains, despite the fact that it was considered as a starting point for the pandemics of 1957 and 1968. The founder of the department of microbiology at Hong Kong University, Kennedy Shortridge, in partnership with Robert Webster, showed that birds and pigs in south China were positive to influenza. He raised a global alert in 1997 when a new flu virus called H5N1 was found in chickens and humans in Hong Kong and later in mainland China. Microbiologists trained by Shortridge and Webster used this proximity between Hong Kong and mainland China to build a virus bank as a sentinel device where emerging viruses could immediately be traced to phylogenic ancestors.
A team of virologists I worked with had thus shown that the Fujian strain of H5N1 circulating in birds and humans could be traced to the massive vaccination of chickens by the Chinese government in 2005. According to them, this vaccination had created an evolutionary bottleneck in which new strains could develop and spread to humans. They were consequently refused by the Chinese government the access to Shantou on the Fujian coast, where they used to go to collect samples, but they argued that they could still produce new knowledge with the information in the sequences they had purified from collected samples. “All the information that we’ve had in the past ten years is because of this massive surveillance that’s been going on in this region. And when the H5N1 virus spreads, we could say: this is the genotype that is spreading, WHO could be preparing, we could send vaccines to these countries where the virus is endemic. But since 2006 when Shantou was closed we don’t know much about this region, so you suppose these nucleotides are spreading outside. Hong Kong is the perfect example of how transparent it can be. Surveillance in poultry, swine, wild birds, as soon as it’s done, it’s made public. And that doesn’t mean Hong Kong is a bad place, it means that everything that is done is reported. We’re sitting on a bunch of information. Viruses are there, still unknown. Even if we don’t do surveillance, we have enough information to work for five years.”
Here we see that preparedness as a technique of anticipation is also a technique of collection. Raising alarm on a new virus is possible from an accumulation of material and virtual information, samples collected in poultry farms or wild bird reserves and sequences stored on data banks. The phylogenic classification of flu strains doesn’t inquire about the end of the disease but about its beginning, and traces it back to points in evolution described as evolutionary bottlenecks. In the logic of storage, there is never too much information to trace a zoonotic event back to its animal reservoir. In a sense, the epidemic never stops beginning, as a phylogenic ancestor can always be found in a collection of samples that was previously unknown or not analysed.
By contrast, with stockpiling, bottlenecks appear at the end of the disease, in the populations targeted by vaccination. The term was probably introduced in the management of infectious diseases from the world of nuclear weapons by Edwin Kilbourne, who was the head of the US Strategic National Stockpile. He was the advisor to President Gerald Ford to whom he recommended in 1976 the administration of 200 million doses of vaccine against flu after a soldier died from a swine flu virus close to the 1918 pandemic virus. Among the first 43 million who received the vaccine, 535 came down with the Guillé-Barrain Syndrome, and the program was interrupted. Kilbourne maintained, however, that the production and stockpiling of vaccines targeting several flu strains (what he called a “barricade vaccine”) was necessary to mitigate the first cases before an adequate vaccine (or rampart vaccine) was produced.
One of the key issues for stockpiling is to identify bottlenecks in the distribution of medical equipment. The unequal access to vaccination is a vulnerability of the infrastructure for which public health agents must be prepared. Stockpiling is equipped with a list of professions that have priority access to vaccination (such as physicians or nurses) and with exercises of triage to detect patients who need emergency care. In the logic of stockpiling, epidemics never end, as there is always a population that has been left out of vaccination, and for which doses of vaccine should me made available. While storage traces bottlenecks in the past, as sites where intervention would have been possible to eradicate the epidemic before it started, stockpiling projects it in the future, as a space for mitigation of the epidemic.
Stockpiling is difficult to investigate ethnographically, as it follows a logic of military secret. The only interview I obtained on stockpiling was at the Animal Health Research Institute of Taiwan. The same institute stored viruses from birds at -80°C and stockpiled vaccines for chickens at +4°C, because the adjuvants in vaccines needed to be preserved. Taiwan started stockpiling vaccines against avian influenza after the SARS crisis in 2003, which had confirmed the scenario of a zoonotic virus coming from China, and the Institute preserved 10 million doses for H5 and 5 million for H7. There had never been H5N1 in Taiwan but a human case of H7N9 was declared in 2013 – a man traveling from Shanghai to Taipei – and a similar H7N9 was found in the viruses stored from wild birds. While China and Vietnam had been criticized for vaccinating their domestic poultry massively with vaccines produced locally, creating evolutionary bottlenecks in the selection of new strains, Taiwan chose to stockpile vaccines and only use them in case of an outbreak. But this created bottlenecks at the level of vaccine management.
The problem raised by stockpiling is: what to do with the excess vaccines produced for strains that are not circulating any more? After 18 months, any non-used vaccines are incinerated, and updated vaccines are bought. Members of the Taiwanese Parliament complained about the quantity of vaccines destroyed, which led the Taiwanese government to decrease the number of vaccines stockpiled and to contract with private companies capable of producing 3 million doses of vaccine within a week. A Taiwanese private pharmaceutical company, Adimmune, announced that it could produce between 5 and 10 million doses of vaccines for H7N9 in six to eight weeks, and was consequently awarded the right to develop the vaccine. While Taiwan cannot sell its vaccines to mainland China, it can give its supplementary vaccines to countries who recognize its legitimacy as part of a global health diplomacy. A similar logic was applied in France in 2009 with the 90 million doses of vaccines that had been ordered by the State and not used by the citizens: many of these doses were proposed to former French colonies such as Cambodia or Algeria.
Managing the stockpile of vaccines thus oscillates between two types of bottlenecks: the scarcity of vaccines for populations considered as priority, and the waste of vaccines that populations don’t need or refuse to take. In the first case, the epidemic never ends, while in the second case it ends too quickly. This is why public health authorities have to prepare for the epidemic without calculation of its duration, as if it was already there. Hence the connection between stockpiling and storage. Because the same viral strains coming from animal reservoirs are conserved in storage and stockpiling, with a few natural or artificial mutations, the epidemic for which stockpiling prepares is latently inscribed in the collections that are stored. The intentionality of the expression “after the end of disease” takes place in a wider set of relations between structure – the classification of viral strains – and events – the emergence of an epidemic. The pastoral logic of curing a population against a pathogen is anchored in a logic of collecting viruses common to animals and humans. There is no end to collecting: the list of entities that compose the world is indefinite.
Frédéric Keck is a researcher at the Laboratoire d’anthropologie sociale (Paris) and the head of the research department of the musée du quai Branly. Besides his own publications on the history of social anthropology and the biopolitics of zoonoses, he has co-edited several collective volumes : (with N . Vialles ) Des hommes malades des animaux, L’ Herne, 2012 ; (with A. Lakoff) Sentinel devices, Limn, 2013 ; (with F. Bretelle-Establet) Penser les épidémies depuis la Chine, le Japon et la Corée, Extrême-Orient Extrême-Occident, 37, 2014 ; (with N. Auray) Virus, Terrain, 64, 2015.
When I began my graphic memoir series, Aliceheimers, it focused just on life with my mother Alice before and during dementia. But the revelatory insight that she has retained, even during the late stages of this sickness, has led me to sometimes let the character “Alice” metamorphose into an odd sort of sage. Here, she and I explore the relationship between Medical Anthropology and Graphic Medicine. Alice’s deeply held beliefs from life before dementia combine with her mind opened by dementia, allowing me to imagine a quasi-academic conversation that we never could have had in real life.
(Visual enhancement text for each page located at the bottom of the post. All page images are linked to larger versions.)
A writer, artist and anthropologist, Dana Walrath likes to cross borders and disciplines with her work. After years of using stories to teach medical students at University of Vermont’s College of Medicine, she turned to writing her own. Her award winning verse novel, Like Water on Stone, was completed during the year she spent as a Fulbright Scholar in Armenia. Her recently released graphic memoir Aliceheimer’s has brought her throughout North America and Eurasia to speak about the role of comics in healing including talks at TEDx Battenkill and TEDx Yerevan. Her recent essays have appeared in Slate and Foreign Policy. You can visit her at danawalrath.com.
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- Panel 1 of 3.
- Title: “Graphic Medicine and Medical Anthropology: An exogamous marriage or paraphyletic groups?”
- Image: Two kinds of family trees: comics (Mickey Mouse ears) and medicine (medical text) combine to form graphic medicine; biological and cultural anthropology (represented by book spines with names of some anthropological sages like Boas, Kroeber, Mead Leakey, Levi-Strauss) combine to form “Medical Anthropology”. These two form “an exogamous marriage”, or break out into “paraphyletic groups?” Two independent family trees each with their own history.
- Byline: Dana Walrath, Univesity of Vermont.
- Panel 2 of 3.
- Alice, a woman with round face and curly hair. Her clothes throughout the text are made up of cut-up pages from Alice in Wonderland.
- Alice points up to the panel above, says “What sort of crazy family trees are those?”
- Panel 3 of 3.
- Dana, a young woman with long hair, replies: “I’m exploring the relationship between the things I do.”
- Alice: “It would be easier if you spoke English.”
- Dana: “You were a biologist. You can get it.”
- Panel 1 of 3.
- Alice imagines an exoskeleton and endoskeleton, and eggs and sperm (thinking the word “gamete”).
- Alice says: “Exogamous: Like how I married Dave.”
- Panel 2 of 3.
- Alice imagines Greek root “para”, meaning “beside”, and relationships among vertebrates.
- Dana replies: “Yes… my father, an odar, a non-Armenian.”
- Alice says: “That makes for hybrid vigour you know.” and “Birds and Reptiles are paraphyletic.”
- Panel 3 of 3.
- Alice imagines a crocodile eating a bird.
- Panel 1 of 2.
- Narration text: “For Alice, Biology was the central dogma…”
- Alice says: “Just because you share a common ancestor doesn’t mean you have to get along. Take reptiles and birds, or my sister…”
- Panel 2 of 2.
- Alice stands in reverie before an array of white-coated doctors flanked by two staffs of the god Hermes, the Caduceus, instead of the correct Rods of Aesclepius, as though they were a pantheon of false gods.
- Narration text: “…and her reverence for its designated gods absolute.”
- Panel 1 of 4.
- Narration: “A reverence rooted in shame…”
- Alice, with eyes closed: “I was in a big ward in New York hospital with lots of kids to get my tonsils out. One nurse checked under my gown and called out to the others, “Hey, get a load of this!” It was my home-made underwear.”
- Panel 2 of 4.
- Narration: “…outrage at false prophets…”
- Alice, hands in the air: “They took my mother to a series of quacks! One of them said pulling her teeth would heal her joints so then she had no teeth. When that didn’t work they took her to a faith healer in Niagara Falls.”
- Panel 3 of 4.
- Narration: “…and passed on through the generations.”
- Alice: “You wouldn’t be alive if it weren’t for doctors. You’ve got hybrid vigour you know, you should be a doctor.”
- Panel 4 of 4.
- A fractured red cross.
- Narration: “It looked like more than basic biology to me. I saw…”
- Panel 1 of 4.
- Drama: A medical soap opera on a TV. Young woman says: “Oh, Doctor! How can I ever repay you!” Doctor replies: “Impossible, I know, now let me check your heart beat.”
- Panel 2 of 4.
- Subjugation: A pelvic exam of a very pregnant Dana. Doctor says “You know who you remind me of, Dana? Annie Hall.”
- Narration: That was a prenatal visit with the student health obstetrician. I chose midwives after that.
- Panel 3 of 4.
- Humiliation: Dana wears an open-backed hospital gown and stands on a scale.
- Panel 4 of 4.
- And super hero mumbo jumbo: Surgeon says “With my retractor and laser scalpel I excised the aneurysm detected on the angiogram impacting the vessels of the circle of Willis located precisely at A. cerebri media thus mitigating the subarachnoid…”
- Panel 1 of 2.
- Narration: “My cortisol levels ran high until I discovered medical anthropology.” An outline of Dana in a hospital gown opening a door with medical anthropology texts and insights found behind the door. Dana thinks “Liberation with an academic spit shine.”
- Panel 2 of 2.
- A rocket ship taking off. Launchpad scaffolding made of words that are part of the scientific approach of biomedicine: technology, scientists, data, power, experiments, research, fight, engineering, thruster, booster, conquer, go where no man has gone before, cure, fight, conquer, booster, experiment, engineering, biomechanics, microbes, invaders, viruses, conquer, fight, research.
- Narration: “A society’s medical system reflects its core beliefs. Our technological system is rooted in the deep scientific tradition of overcoming nature.”
- Panel 1 of 2.
- Alice very annoyed, shaking a finger and frowning. Alice says “What are you doing, Dana?!? This is very disrespectful. The idea that medicine is just a bunch of beliefs and practices and not pure science is absurd. I told you this anthropology business was a bad idea, that you’d never get a job. You should have gone to medical school and become a doctor then you’d know what’s what!”
- Narration: “No one likes their beliefs challenged.”
- Panels 2 through 9 of 9. Argument back and forth between Alice and Dana.
- Dana: “Medical schools like to hire anthropologists.”
- Alice: “What on earth for!”
- Dana: “Accreditation now requires training students to care for diverse patients.”
- Alice: “Bodies are all alike! It’s only minds that differ.”
- Dana: “You sound just like an old school doctor.”
- Alice: “Thank you. That’s very kind of you to say.”
- Dana: “But mind body dualism is just a social construct.”
- Alice: “You’re out of your mind! I dare you to show me.”
- Panel 1 of 2.
- Alice and Dana’s conversation continues.
- Above Dana, a diagram from Descartes showing the pineal gland, another image of sunlight and a bird. Dana says: “To overcome church prohibitions against cadaver dissection and legitimize scientific study of the human body, French philosopher René Descartes (1596-1650) separated the mind and the body, locating the soul in the pineal gland.”
- Above Alice, an image of a lightbulb and a bird, contrasting with the sunlight/bird image above Dana.
- Alice says: “Pineal. A pine cone-shaped, light-sensitive gland that lets birds synchronize their egg-laying with daylength.”
- Alice says: “Just where would any of us be without Descartes? Dead! How on earth would a surgeon have found your ruptured appendix?”
- Panel 2 of 2.
- Alice conversing with Ludwig Bemelmans’ children’s book character, Madeline.
- Madeline says: “I would have died, too.”
- Alice says: “You are just a character from a book, Madeline. You don’t really have an appendix and you can’t die!”
- Madeline replies: “True. I just turned 75 while Ludwig Bemelmans, my creator, died in 1962. Our first book has taught generations the core values of our medical system.”
- Panel 1 of 4.
- Alice sneering at Dana.
- Alice says: “Ok, miss smartypants, Dr. Dana, what truths did the generations glean from this charming book?”
- Panel 2 of 4.
- Dana hanging upside-down from a tree branch.
- Dana says: “That there are right and wrong ways to behave around sickness, that the ideal sick role is temporary, that when sick you will be cared for but you can’t want to be sick, that experts decide if and with what you are sick, that the body is like a care that experts can mechanically fix.”
- Panel 3 of 4.
- Alice yells: “Get down from there right now!!!”
- Panel 4 of 4.
- Alice and Dana have calmed down.
- Alice says: “All right. That’s better and that’s all true. The body breaks and doctors fix it.”
- Dana: “Socially true. Medical anthropologists locate sickness in three interconnected bodies: the physical, the social, and the political. That’s why medical schools hire us.”
- Alice: “Waste of money if you ask me.”
- Panel 1 of 1.
- Narration: “Medical anthropology avoids reducing the complexity of sickness and health into biological universals by incorporating biocultural interaction.”
- Image: Three nested figures: the political body as a looming monster, arms outstretched, decorated with dollar signs; inside, a human body (the physical body) with guts visible, surrounded by other stick figures that say “yes” or “no” representing the social body.
- Text surrounds the monster: “The political body determines who gets sick and well and how the social body gives meaning to physical states. The social body even defines the ideal physical body and then legitimizes practices such as plastic surgery, body piercing, or ritual scarring to attain that ideal. Medicine is a form of social control. Wealth means health.”
- Footnote: “For more see Scheper-Hughes and Lock (1987) MAQI: 6-41.”
- Panel 1 of 2.
- Dana and Alice conversing. Levi-Strauss’s magic field diagram embedded in Dana’s speech balloon.
- Alice: “What a pile of mumbo jumbo.”
- Dana: “Exactly! Mumbo jumbo lies at the heart of most healing systems. Experts have access to a world of secret knowledge that could consist of anything from spirits to science, patients and communities believe in those who can access the secrets.”
- Panel 2 of 2.
- A shaman with spirals, hands and other iconography in his speech balloon overlapping with that of an MD who has an EEG read-out in his speech balloon.
- Panel 1 of 4.
- Alice and Dana conversing.
- Alice: “Enough already! The content is bad enough but to mix comics with medicine is positively insulting. I want no part of it.”
- Dana: “But you were the whole reason I got into this.”
- Panel 2 of 4.
- Alice: “Me? How’s that?”
- Panel 3 of 4.
- Dana: “You have Alzheimer’s Disease.”
- Panel 4 of 4.
- Alice: “I forgot. What a lousy thing to have.”
- Panel 1 of 2.
- Conversation continues.
- Alice: “Why comics?”
- Dana: “Because when you lived with us you ate up every graphic narrative that came into the house. The pictures helped the story stick.”
- Alice: “I did?”
- Dana: “Also, we got along better during this sickness than we ever had. I admire and respect how you have handled it.”
- Alice: “You did?”
- Dana: “I wanted to tell that story. I wanted to help rewrite the dominant biomedical narrative.”
- Alice: “Why comics?”
- Dana: “Because the rule-breaking tradition of comics makes it the perfect medium for shifting the biomedical conceptualization of Alzheimer’s Disease.”
- Narration: “Biomedicine gives us a zombie story.”
- Panel 2 of 2.
- Alice falling down a zombie spiral.
- Panel 1 of 4.
- Alice with Zombie eyes and posture holds a distorted Alice in Wonderland
- Narration: “Without minds, who are we?”
- Panel 2 of 4.
- Alice up in a tower, yells “Save me, doctor!”
- A white-coated doctor runs past, says “Quick! To the lab!”.
- Narration: “And a cure, elusive.”
- Panel 3 of 4.
- Image: A spiral with squares marking biological birth and death.
- Narration: “But if we turn the zombie spirals into the lifecycle and add squares for biological birth and death – emergence from the womb or that last beat of the heart or that final breath – then these lines can show social birth and social death, when society confers personhood or takes it away.”
- Panel 4 of 4.
- Narration: “Stigma, silence, and social death surround states a society might fear or reject.”
- Alice with one zombie eye and the other eye open, says “Why comics?”
- Panel 1 of 1.
- Image: Alice travels around the sun.
- Narration: “Because comics undo social death. We see you. You are real. You make us smile. Comics let us get inside different ways of being, to understand experiences that we fear right down to the core of our medical system. Graphic medicine tackles everything from cancer to epilepsy to HIV to the entire spectrum of conditions of the “mind”. It takes the stigmatized and makes it safe. Graphic medicine gives us ways to see the world through the eyes of others, those who are hurting, to feel their stories and remember our own, and to heal. Healing is not the same as curing disease. It does not involve surgery or taking a pill. This social process depends on sharing stories and letting our collective memories meet. By meeting through story, we make peace and move on even if we are sick or hurt or dying.”
- Panel 1 of 3.
- Alice and Dana embrace.
- Alice says: “Thank you.”
- Dana says: “And thank you. … … So, what do you think: exogamous marriage or paraphyletic groups?”
- Alice: “Both. graphic medicine and medical anthropology arose from the same primordial swamp.”
- Panel 2 of 3.
- Swamp with steam rising from it. Swamp contains words bubbling to the surface: “By any means”, “Pain”, “Anger”, “Discontent”, “Frustration”, “Injustice”, “Feminism”, “This is broken.”
- Panel 3 of 3. Alice and Dana hold hands and smile.
- Alice says: “And the marriage is exogamous. Comics and medicine, like cultural and biological anthropology, have their own languages and traditions. This makes both graphic medicine and medical anthropology exogamous before they even hooked up.”
- Dana: “In anthropology the answer is always both, or malaria.”
- Alice: “That makes for hybrid vigour, you know.
- Dana: “Sure does.”
Sadeq Rahimi’s Meaning, Madness and Political Subjectivity: A Study of Schizophrenia in Turkey by Ayşecan Terzioğlu
By Sadeq Rahimi
Routledge, 2015, 248 pages
This book is issued by “The International Society for Psychological and Social Approaches to Psychosis” series, which aims at enhancing the dialogues between social scientists and practitioners, especially in the fields of trauma, attachment relationships in the family, in social settings, and with professionals. Rahimi manages to cover all these issues in detail, analyzing the cases of three schizophrenia patients in Turkey and relating these to historical and social dynamics, ideological debates, and clashes within the country. This rather ambitious project is based on interviews with the patients, their family members and their clinicians in three hospitals in Istanbul. The author is mainly interested in how the patients interpret their own illness experiences. In addition, Rahimi conducted ethnographic research in order to produce “thick cultural analyses” (2), which provides the necessary background information for the analysis of each patient’s case.
Rahimi defines schizophrenia as “one of the most idiosyncratic modalities of subjective experience” and contends that it consists of a “highly private experience” that can nevertheless be associated with the larger political, cultural and historical dynamics (1). Rahimi’s understanding of political subjectivity through the interaction of meaning and power is the key in his analysis of the patients’ narratives, especially in terms of their main themes’ connections to common political and cultural discourses. In his evaluations of “systems of meaning”, Rahimi justifies “certain associations of signifiers” or “certain patterns of associations of concepts” as “more accurate or more truth bearing, and thus more legitimate or more desirable than the others”, rather than firmly establishing and singling out particular associations. This relativistic approach brings out a unique sophistication in Rahimi’s analysis. Thus, he aims to establish the configurations or maps of meaning, which are shaped by the “collective memories, narratives, and fantasies, such as histories, myths, folk beliefs and other collective products” (9). Subscribing to contemporary theories (such as Lacan’s theory) of subjectivity, Rahimi suggests a semiotic approach in which subjectivity is based on the interactions among power, meaning, desire and memory. He borrows Voloshinov/Bakhtin’s dialogic views of selfhood and subjectivity, as well as heteroglossia, which includes a “fundamentally liberating understanding of discourse as multilayered, multitemporal and multidimensional” (17). The author argues that schizophrenia is the most appropriate psychosis for such an investigation of subjectivity, since it includes moments of “crisis when the individual is struggling to use the most elemental tools available to him or her to organize, or reorganize a sense of meaningfulness and selfhood” (23).
Before analyzing the three patients’ cases, Rahimi provides a sweeping historical account on the Turkish nation and identity. He particularly focuses on the 20th century during which the political transformation from Ottoman Empire to Turkish Republic took place, along with the efforts to erase the Ottoman “political, religious and cultural traditions from the collective memory” and inculcate a modernist and Europeanized identity from the top-down (25). In this framework, he provides a list of the wide-ranging changes in the 1920s and ‘30s, such as the laws on appropriate clothing, religious practices, adoption of European laws and legal systems, Christian calendar and workdays, and the Roman alphabet, along with the accounts of public resistance to these changes. Relatedly, Rahimi talks about the resistance movements to the Kemalist project of nationalism and modernization, including the Kurdish revolt in 1925, led by the Naqshbandi Sufi order’s leader Sheykh Said, which was brutally crushed. In his reading of the later decades of the Turkish Republic, the author emphasizes the crucial role of the military in politics, especially in terms of initiating coups, and AKP’s conservative, Neo-Ottomanist and neoliberal agenda which prevailed in Turkey since the early 2000s.
The way Rahimi narrates Turkish history informs the patients’ identity issues and sense of belonging. However, in this historical account, a crucial term between 1983-1991, in which Turkey was run by the Turgut Özal’s central-right party ANAP, and which laid the foundations of the AKP’s political and cultural agenda, was largely omitted. This problem causes a rather dualistic reading of history of Turkey between the Kemalist elites and religious groups oppressed by them. This dualism also affects the analyses in the following chapters, since they are often related to the dualisms between religious/secular ways of thinking and living, being powerful/powerless and feeling/not feeling a sense of belonging to the family/community/nation, rather than having a more nuanced reading on the hybridization of these seemingly contrasting concepts. For instance, Rahimi often quotes Islamic texts, rather than taking into account those texts’ popular/folk interpretations, i.e. how those texts were read, internalized and interpreted by the religious or non-religious people in different periods of Turkish history.
In his analysis of the three patients, Rahimi successfully ties the personal issues, such as love and loss, to the political and social dynamics in Turkey. In the first patient, whom he names Emel, the readers see a case of “semiotic juxtaposition” of Emel’s brother, who is separated from the family in order to do his military service and “the boyfriend”, who did the same thing for the same purpose, in Emel’s account (52). Rahimi connects this juxtaposition to the interlinked themes of love, loss and sorrow, and argues that the association that Emel, her family, and her doctor made between the departure of her brother, whom she often mentions as her lover, and her psychotic illness is “culturally appropriate,” since feeling sorry as a result of a major loss is a central theme in Sufi interpretation of Islam. (55) Accordingly, Rahimi gives examples from Sufi poet Rumi, explaining the sorrow as being torn away from the origin and longing for the times of unity, embodied by the ney, a key instrument in the Sufi music, which was made of/cut away from the reed in order to become the breath of sorrow for the people, as well as other Sufi sources. However, it is not clear for the reader whether Emel, her family members or her doctor are informed by these Sufi sources and their popular interpretations. The fact that there are no quotes from, or allusions to, these sources may lead the readers to think that there are certain crucial gaps in the map of meanings, especially since the cultural and religious sources, beliefs and practices are highly fragmented and mutually exclusive in today’s Turkish society. Rahimi displays the connections between Emel’s troubles and notions of personal and collective identity, blood, purity and pollution much more successfully. Through Emel’s quotes, the readers can easily follow her struggles to define her identity, despite the dualism between “East and West”, which prevails in the historical and current political and cultural debates in Turkey, as well as between the Turkish/Islamic side and Western/non-Islamic sides in her family. She partly overcomes these dualisms through her belief that she has the “Turkish blood type” and the “universal spirit of Ataturk”, the founder of the Turkish Republic, running through her body (62). At the end of the chapter on Emel, Rahimi confesses that he could point to only “partial networks of ideas, of signs, and of belief structures, without synthesizing them into a more comprehensive system of anchored subjectivity”. However, I believe that this is the strength, rather than the weakness of the chapter, as well as of his other chapters, since it refers to the ever-fragmented, intangible and elusive nature of how the realities are represented, especially in psychotic patients’ illness narratives.
The second case – Senem’s story – that Rahimi covers has more direct allusions to the political tensions and conflicts in Turkey and obsessions with number 12, and red as a color of both patriotism (based on Turkish flag) and impurity (associated with bloody hygiene pads). Rahimi has a feminist reading of the story of “Senem”, where he discusses that, through the “social, political, and religious context” in which she lives she acquires a “symbolically legitimized position of power” through her “victim” position and the discourse, which is based on that victim position. This seemingly contradictory subjectivity stems from the fact that she is “deprived of any culturally endorsed claim to power or a voice in which to live her resistance” and victimhood (93). Among her life events, the researcher highlights the traumatic events, such as her first child dying shortly after birth, which caused her to have “paranoid delusions that the child is actually alive”.
Senem’s narrative is also told as a series of unfair and discriminatory attitudes towards her, despite her love for Turkey, and that she is smart, well-educated and well-read. The narrative includes a fictive “twin”, Celal Bey, who has the same name as one of the founders and third president of the Turkish Republic whose term abruptly ended with a military coup and imprisonment. Similar to “Celal Bey”, Senem believes that her love of the country and its flag and her efforts to do “something smart” for her country, leaves a stain on her and allows her to be punished by others, according to her narrative. Senem differentiates herself from less intelligent and educated neighbors, who are “religious-traditionalist” unlike Senem who reads and understands the Turkish translation of the Quran. Senem also suspects that her husband cheats on her during his business trips in Romania, and as a result she lights a fire on the balcony, which Rahimi calls a “red-burning session”, since she throws everything red in the fire, including the blood-stained “dirty” sheets from her home, which made her suspect her husband’s affair (116). Senem’s story ends with her association of her self with Mary and her first baby (who died shortly after birth) with Jesus, which the author ties to the fact that Senem was possibly raped by her husband before marriage in order to force her to get married. He justifies his suspicions with the facts that Senem’s “strong character and sense of liberty and coming from a family with liberal tradition” do not fit her husband’s being “ultraconservative, rigid and unsophisticated as described by Senem and her mother (127) and that she saw her husband as a pig in one of her visions.
The last case the author analyzes is a young man who lives in Switzerland and who was brought to Istanbul for his treatment. Ahmet’s diagnosis is clinically more contested than the previous two cases, since the clinicians first thought that he was depressed because of his childhood difficulties and failure to adapt to Switzerland. Based on his life-story, the author argues that his difficulties of adjustments started when he was in primary school, where he was forced to read and write Turkish, instead of Kurdish, which is Ahmet’s native language. Since he went to work abroad before having his family in Switzerland, Ahmet’s father was largely absent in his life and after coming there, Ahmet moved from one place to another with his family while working in jobs only on a temporary basis, which added to his lack of sense of belonging. He encounters a Swiss woman, towards whom he feels an unrequited love, and he becomes obsessed with an emanet (the term can be translated as trust, deposit or escrow) which he left with her the last time he saw her, and which he wants to take back when he sees her again in order to “straighten everything out” (168). Along with depression, Rahimi describes Ahmet as melancholic and relates his linguistic deficiency in talking about that unclear emanet to Kristeva’s notion of Chose (Thing) that belongs to a pre-symbolic realm and is unspeakable since it “eludes signification” (172). Rahimi studies the link between madness and love with respect to its “uniquely central signifier in Turkey”: Mecnun, which means both “crazy” and “madly in love” and which has a pivotal place in Islamic oral and written literature (180). The term also connotes being affected by the jinn, which is often associated with sexual activities.
To conclude, Rahimi gives examples from each case in order to underline three basic modes of continuity: “The mutual continuity of private experience and collective meaning, the continuity of symbolic systems (and thence of culture and of subjectivity) in time, and the continuity of psychotic and nonpsychotic modes of subjectivity” (200). Although this is a thorough analysis, which applies the theoretical framework to the main themes of illness narratives successfully, the readers may like to read more of Rahimi’s comparisons among the three cases, particularly with respect to their gender and socio-economic differences. Moreover, since each case is chosen from three people who are treated in three different hospitals, namely the state university hospital of Çapa, Bakırköy, which is one of the oldest and best known state research and education hospital, and Balıklı Rum Hospital privately owned by a Greek Foundation in Istanbul, one would like to have more information on different therapeutic discourses and practices, as well as of clinical interactions in those three hospitals on a comparative basis. However, this may stem from the author’s choice to put the patients’ narratives in focus, at the expense of the treatments that they go through, although the treatments themselves (such as individual or group counseling) may also affect the illness narratives. This more macro and mezzo scale study could be covered by Rahimi’s upcoming studies. Therefore, despite its minor problems, this book is a fine example and guide on how a medical anthropologist can grapple with crucial issues of mental illness, subjectivity, culture and power. I recommend this book to medical anthropologists, psychiatrists, psychologists, as well as scholars of the Middle East and religious studies.
Ayşecan Terzioğlu is an Assistant Professor at Koc University, School of Nursing and Health Sciences in Istanbul, Turkey. She is interested in biopolitics, globalization, immigration and health. Her co-edited book The Making of Neoliberal Turkey was issued by Ashgate in January, 2016.
The emergence of Severe Acute Respiratory Syndrome (SARS) in China’s Guangdong Province in the winter of 2002 was an exemplary spillover event: it marked the passage of a lethal pathogen from nonhuman to human animals and was widely heralded as the first “plague” of the twenty-first century. The SARS coronavirus seemed to burst out of nowhere and demonstrated pandemic potential from February 2003 when it diffused globally via Hong Kong. After SARS was officially declared contained by the World Health Organization (WHO) on 5 July 2003, there were a few isolated cases but none since 2004.
SARS in the SAR
Hong Kong was at the epicenter of the 2003 SARS outbreak and the identity of the newly recognized pathogen became fortuitously linked to Hong Kong’s evolving status as a postcolonial Chinese city under Deng Xiaoping’s “One Country, Two Systems” policy. Since its “handover” from Britain in 1997, the territory had been a “Special Administrative Region” (or SAR) of the People’s Republic of China (PRC) – a quasi-autonomous region within the sovereignty of China.
In a WHO press release on 15 March 2003, the new “syndrome,” which had made its first appearance in Hong Kong in February of that year, was named “SARS.” The acronym was easily confused with the abbreviation SAR by which Hong Kong was known. SARS and SAR acquired a disturbing indexicality. Referred to sardonically by some commentators as the “Special Administrative Region Syndrome,” Hong Kong officials were wary of using the term SARS to describe the new disease. Instead, they continued calling it “atypical pneumonia.”
Colonial Hong Kong had from its beginning lived under the shadow of its looming end. The New Territories, which make up the majority of Hong Kong’s territory, were acquired by the British from the Qing on a 99 year lease in 1898. In 1997, the year that the lease expired and Hong Kong was handed back to China, H5N1 broke out. Discourses of ends and beginnings converged. The end of a colonial regime and the beginning of Hong Kong’s new chapter as a SAR coincided with a novel emergent threat.
When SARS broke out it did so within the context of another projected end, since questions remain about what Hong Kong’s status will be 50 years from 1997 when the agreement with China recognizing Hong Kong’s “basic law” will expire. In Hong Kong, then, the “end” of disease became enmeshed in a state politics of ends and beginnings.
Disappeared but not Gone
Since 2004, SARS research has fallen-off dramatically, as evidenced by a search on PubMed. However, the question that is periodically asked is: Where has SARS gone? The short answer is that public health measures were effective. Although SARS caused a reported 774 deaths worldwide between November 2002 and July 2003, case detection, isolation, quarantine, along with contact tracing, broke the chain of transmission.
From another perspective, of course, SARS hasn’t gone since specimens still exist in research facilities. Potential security lapses keep alive the specter of the pathogen’s reemergence. After the WHO’s announcement that SARS had been contained, a number of outbreaks were linked to biosecurity breaches at research institutions in Asia. In September 2003, a researcher at the National University of Singapore contracted SARS through contaminated specimens. In December 2003, a researcher in Taiwan got infected through contaminated waste material. Poor security at the National Institute of Virology in Beijing led to a cluster of SARS infections in China in 2004. In a much publicized breach in 2014, the Institut Pasteur in Paris announced the disappearance of more than 2,000 vials containing fragments of the SARS virus.
SARS also exists as a potentiality in the wild. SARS-like viruses have been reported in a colony of bats in China’s Yunnan Province. From analyses of whole-genome sequences of these novel bat coronaviruses, it has been suggested that they are closely related to the SARS coronavirus. A 2013 paper in Nature reported “the strongest evidence to date that Chinese horseshoe bats are natural reservoirs of SARS coronaviruses, and that intermediate hosts may not be necessary for direct human infection.” The study also suggested a potential for future spillovers and stressed “the importance of pathogen-discovery programs targeting high-risk wildlife groups in emerging disease hotspots as a strategy for pandemic preparedness.” In other words, the complex events that triggered the disease outbreak in 2003 could reoccur. In this sense, SARS may have receded from view, but it hasn’t gone.
Double Take: The False Ending
This equivocal ending – the anticlimactic finale that turns out to be no more than a provisional closure – raises broader issues about how we demarcate epidemics as events. Relatedly, it underscores the way we conceptualize a virus’s de-emergence; that is, the disappearance of a recognized highly pathogenic virus like SARS that nonetheless continues to exist in a relative virus with the potential to spillover. While the emphasis in the scientific and popular literature tends to be on the process of “emergence” – on a virus’s sudden visibility – much less attention is paid to the reverse process of de-emergence (or “disappearance”). In one sense there an obvious reason for this. Novelty ensures visibility. A disease ends as soon as another newly recognized illness arrives to eclipse it.
In a study of fictive endings, the literary scholar Frank Kermode noted how human beings impose a coherent pattern on the world to explain the apparent arbitrariness of life. We make sense of an experience by parenthesizing it in a story. In Kermode’s words, we fabricate “an intelligible end” that is consonant with a beginning and a middle. Endings are both imminent (impending, about to happen) and immanent – in other words, they are contained within the story and given meaning in relation to the beginning and middle that precede them.
There may be excitement, panic, and urgency in descriptions of the spillover that precipitates the epidemic crisis, but there is much less accentuation on the end. Despite the relief of containment, epidemic dramas often peter out with an ellipsis. We are left wondering whether the story is not, in fact, about to begin again. As David Quammen concludes in his account of the SARS outbreak in his 2012 book Spillover: “Apart from the aftershock of cases in early 2004, SARS hasn’t recurred … so far.” Here, we are given the classic faux ending of the epidemic. The qualified ending that may in fact intimate the prospect of recurrence.
False endings are a particularly striking feature of the popular outbreak narrative, of course. Take Steven Soderbergh’s movie Contagion (2011). After the fictional MEV-1 pandemic is finally over, an epilogue to the main narrative shows diggers tearing up a subtropical forest. Fruit-bats flit ominously through the trees and roost in a piggery. In effect, the movie ends where it begins with the prospect of a new and potentially endless contagious cycle.
Multiple endings were filmed for Wolfgang Petersen’s 1995 movie Outbreak – with the final ‘happy ending’ version winning out as a result of approval ratings in test screenings. In the movie, a lethal, Ebola-like virus is introduced to the United States from Africa, when an imported monkey breaks out of its cage and infects the Californian town of Cedar Creek. Just in time, the protagonists find an antiserum and save the town from bombing. In the ending that was preferred by Petersen, the movie cuts back to Africa, where trees are being felled to the sound of screaming monkeys.
The final sequences in these plot lines recuperates their beginnings. The virus’s hosts live on the very edge of visibility, somewhere between an incomplete ending and an incipient beginning. This indeterminacy invariably gives the narrative a spectral quality: the end is haunted by the prospect of another outbreak with the pathogen perhaps more efficiently transmissible the next time around. The animal host lurks on the perimeter of the clearing, waiting for what Richard M. Krause has called “undercurrents of opportunity.”
We are dealing, in other words, with a false-ending – with an end that turns out not to be an end at all, but rather a spurious foreclosure and at best a pause for breath. Such narratives invite us to rethink what an “end” means. Rather than asking “where has the SARS virus gone?” we might reformulate the question to enquire: What was the virus before it was SARS? What will it become when it is no longer SARS? In questioning the end, we call into question the beginning. We enter into the realm of incalculable risk and perpetual anticipation.
Temporal Convolutions: Preventing the Beginning Before the End
The question “where has SARS gone” turns out, in effect, to be another way of asking where the virus has come from. The title of this blog series, “After the End of Disease,” could be plausibly recast as “Before the Beginning of Disease.” The problem of the future turns out to be rooted in the past. One strand of preparedness lies precisely in going back; in tracking the virus to its natural host reservoir – to the place of its pre-emergence. Pandemics may be anticipated by monitoring viral activity in animal populations where the potential exists for spillover. Samples of blood from bush meat and markets may be analyzed in the laboratory to reveal “viral chatter.” As Nathan Wolfe has remarked: “We have found brand new retroviruses, the class HIV belongs to, and new pox viruses, cousins of smallpox. A number of things we have identified haven’t spread, or have spread but not substantially. The potential is there, though…”
While the interface between human and animal populations requires perpetual surveillance, the border-territory must also be crossed in order to detect emergences in the wild before they have become visible as epidemic diseases in humans. Here, the beginning becomes as equivocal as the ending.
Endings in the Borderless World
Defining a disease in terms of its beginning and ending involves the imposition of borders. We might think of an “end” (or, for that matter, a beginning) as a line drawn around an object. For something to become an “event” it requires epidemiological demarcation – it needs to be fixed in time and mapped across space.
Disease emergence presumes a bordered world. We could push this notion of the border across domains: from the structured viewpoint of the microscope in biology to epidemiology, public health, and the politics of targeted drone vision. Globalization, too, may be thought of as a process of intensifying global connectivity that erodes borders to produce a “borderless” world. This breakdown of borders, barriers, and boundaries – and a concomitant drive to reinstate new frontlines – has certainly been a central concern in the literature on disease emergence from the late 1980s and early 1990s.
Conceptualizing disease in terms of a beginning and an end implies an angular view of the world – a “framing.” Disease emerges as a discrete object within a spatial and temporal perimeter that’s defined by the beginning and end. Yet this frame cuts off continuities and interrelationships, inevitably foreclosing complexity – the complexity of genetic constellations, for example, that make identification of a beginning problematic.
Over the last 6 years in Hong Kong, I have taught a cross-faculty course on global histories of infectious disease. With each intake it is clear that the memory of SARS is fading. And yet in Hong Kong, SARS remains a powerful presence. The traces of SARS are evident, not only in memorials to those who perished during the epidemic, but in the ubiquitous hand sanitizers, in the face masks and notices informing the public that elevator buttons, door handles, and escalator rails are regularly disinfected – and in responses to other emergent fears. Above all, SARS remains embedded in the SAR as the marker of a new beginning and of a particular state of exemption.
Is ethnographic research analogous to a gold mine project, an extractive industry that makes a social and material landscape knowable, and hence governable? Is knowledge construction a veil for narrative extraction, where knowledge is a commodity to be reassembled for productive gain? I ask these questions as a way to tease out the tensions experienced between me and my collaborators that occurred during field research.
In July 2013, I returned to the Southern Ecuadorian Andes to conduct research return: the sharing of findings with participants to seek their critical feedback. Having conducted fieldwork between 2008 and 2010 among anti-mining activists, my impressions were messy: scientific studies of water pollution sparked a local movement against a proposed Canadian-backed gold mine, but gender and racial/ethnic differences divided the movement in antagonistic ways.
After having agreed to participate in my earlier fieldwork, Rosita—one of my closest collaborators—refused to participate in the research return workshop. In this essay, I take the case of Rosita’s refusal as a multi-layered feminist practice. In focusing on an act of refusal, I show how my failure to conduct research return among a group of women anti-mining activists is a story of the political conditions that entangle ethnographic research with processes of extraction, i.e. extractivism.
In 2013, I visited some of my closest informants—Doña Patricia, her two daughters and their neighbor Rosita—all of whom form a women’s anti-mining group, to seek their participation in a research return workshop. Doña Patricia’s home is a modest two-room house nestled in a flat valley surrounded by rolling hills. The zigzag fences created a patchwork of green and brown grassy pastures, demarcating those farms that had irrigation and those that did not. This was an area dominated by dairy farmers—some rich, some poor—who supplied milk to regional and national producers. The women in the group had come together against a proposed gold mine project located upland in their watershed.
They shared the same political goal, but were a socially heterogeneous group that varied in ethnic ancestry, access to markets, education, and age. Although not all women were mothers, the organization used the language of “motherhood,” cast in biological and environmental terms, to oppose the proposed gold mine: they defended “Mother Earth” and sometimes represented themselves as “madres” who worried about the mine’s impacts on children. Doña Patricia and the others quickly and enthusiastically agreed to participate in a research return workshop, which I referred to as devolución. The root word of devolución is “devolver,” an adjective that means to give back or return something to its original place. It comprises a little-written about aspect of activist research methods that values collaborative knowledge production (see Hale 2001).
Several days after our initial agreement was reached, Doña Patricia’s daughter Ceci phoned to tell me that Rosita, relying on her authority as president of the women’s organization, had called off the meeting. According to Ceci, Rosita believed that the women in the group would have to stand up and provide some sort of testimony that I would document and take away with me to the USA. I called Rosita to talk through and clarify what I was hoping to achieve. After all, I had done extensive interviews with Rosita and thought that if I could just explain devolución in local terms of accountability (rendir cuentas) she would understand and, ultimately, want to know how I had incorporated their interviews into my study. My goal with devolución was to seek the women’s validation of my research results with the hopes that it could be used in ways to support their political agenda. But Rosita refused.
I was struck by the image that Rosita conjured of the devolución. She had evoked a public performance in which the information would circulate beyond her control. While most anthropologists would consider presenting one’s research to the community in their native language an ethical act, I suspect that for Rosita the opposite was true. I wondered if Rosita feared the circulation of information within her community. Did she worry that certain information considered private would be made public, or perhaps that she would lose control over the political narrative about the women’s group?
Rosita knew that I had been a doctoral student whose writing would be read by a largely English-speaking audience. During my initial fieldwork, she invited me to her home and maize patch many times and granted me two formal interviews. Her refusal to participate in return research belied the collaborative relationship I thought we had developed. Rosita never fully explained her refusal to hold a women’s devolución workshop. Instead, she translated her concerns with the workshop into an idiom of extractivism—a term with negative implications that we both understood.
Rosita’s evocation of extractivism reveals the awkward relationship between collaborators and anthropologists. While some scholars suggest that ethnographic research and the political agendas of activism may be mutually constructive, in my experiences such mutuality was complicated by the political conditions under which both set of actors labor.
For instance, my initial research plan in 2008 did not exclusively focus on anti-mining activists, but then everyone wanted to know which side I was on. Some people silently eyed me with suspicion; others were more vocal and demanded to know my intentions. In an effort to earn trust, I let my political views guide my research. I aligned my research with the defense of watersheds from mineral extraction hoping to use my research to support the rights of farmers who could be displaced by an industrial gold mine upstream.
As I learned in practice, the decision to politically support farmers did not take into account that anti-mining groups were internally fragmented and had competing political agendas. The movement’s heterogeneity enabled connections with research that, in their partiality, maintained differences among our agendas. At times, my enactment of ethnographic knowledge enabled a connection with the women’s group and other times, their activist embodiment of refusal underscored the differences between the women’s political agenda and my practice of anthropological research.
At the start of my fieldwork in 2008, the women’s group allowed me to volunteer with them. I co-organized an international women’s anti-mining conference and several popular education workshops on a variety of topics related to environment, health, and human rights. Through these events, I documented the process through which, as one woman put it, the diverse group of women learned “how to speak.” Learning how to speak enabled them to craft their own narratives against mining, grounded in their unique position as agrarian women who defended human and non-human life. They spoke on radio shows, marched in streets, staged protests at government offices, and travelled throughout rural areas to share their knowledge about the effects of mineral extraction.
In learning “how to speak” their activism challenged the pervasive sexism within an anti-mining movement that was organized by male-dominated communal water-boards. While the water-boards were democratically run, Rosita and Doña Patricia told me that they would never be elected to the leadership because of their lack of formal education. In the rural Andes, women are not explicitly barred from participating in water board meetings or holding office, but they become excluded through a common perception that men “know what to say and how to say it” (Bastidas 2005: 160).
Formal education and the ability to “speak” becomes a rationale that reinforces gender asymmetries in community politics. The women’s group challenged exclusionary political practices by rejecting the masculine standards of speech that can stir up a crowd. A former president of the women’s group prided herself on “speaking” at a rally. She told me that it did not matter if the words come out “good or bad” as long as she spoke.
When mining conflicts erupted, tensions over the gendered organization of politics came to the fore. In an interview, Rosita recounted that in 2007 the anti-mining movement blockaded the Pan-American Highway and, in the face of mounting police repression, became split over the decision to continue to protest or to participate in a government dialogue. She criticized Luis, then president of the communal water board for deciding to participate in a government dialogue. She and other women in the group believed that such dialogues were efforts to manipulate and pacify the movement. In a verbal confrontation with two men from the water-board, Rosita challenged Luis’ decision. In response, the men involved defended Luis’ actions and called her “stupid.” Rosita believed that Luis often acted in self-interest, “to become big, like Herod [from the bible].”
Rosita and a group of women maintained their membership with the community water-board, but politically aligned themselves with the National Coordinating Committee for the Defense of Life and Sovereignty (CNDVS, by its Spanish acronym)—a radical, pro-peasant anti-mining group with Marxist-feminist leanings that favored street protests over state dialogue.
I met Rosita through my work with the women’s group. In April 2008, she and other members of the CNDVS staged a road-blockade on the Pan-American Highway. She was violently arrested—hit, dragged, and stepped on by police before being shoved into a paddy wagon. My writing and research skills became useful to the organization. I wrote a popular news article on the protest and arrests, and documented her story for a human rights legal petition.
Our agendas were not, however, always so closely aligned. Shortly after the protest, the Ministry of Mines and Petroleum organized a consultation meeting with civil society organizations to discuss a draft mining law. While the activist groups rejected the invitation, I opted to attend because at the time I believed it was an important opportunity to understand state discourses around mining and get a better sense of what kind of “civil society” groups participated in such events.
The event was held in the city of Cuenca on the side of town where rural peasants came to sell their products and in a building that formerly housed an important state agrarian modernization program. At the start of the meeting, a group of protestors outside could be heard yelling “You don’t sell the Motherland (la Patria), you defend it.” I stood up to look out the window and I saw the women’s group alongside some of their male allies from the CNDVS. From down below Rosita saw me in the window. At a meeting the following day, she and others were upset with me. They said that I was wearing a tie.
Indeed, I had worn a cowl-necked double breasted knit jacket to the government consultation forum, which, in their view, stood in for a man’s tie. My body was that of a minero, a masculine term that can be applied to women. The term is a gendered critique of mining supporters who align themselves with a masculine, imperialist endeavor. The women’s group made hard distinctions between themselves as radical anti-mining activists and male/imperialist pro-mining groups. They used this distinction to question my affinity to their cause. I was in drag. I was suspected for betraying the organization. Yet, without having attended the government dialogue I would have not learned that multinational mining company employees positioned themselves as “ciudadanos” (national citizens) who called on the government to control “radical environmental groups” obstructing mineral projects. A couple of months later, rumors broke out that I was a mining company informant and in September 2009, I was asked to “cool off” my collaboration.
The following year, I was able to continue my research in the area with the support of many but not all of my previous collaborators. I regained relationships with Rosita and her neighbors, and expanded my collaborators to include the communal water boards that brought together men and women against the mine project.
My relationship with Rosita evinces the ways that the endeavors of ethnographic research and activism diverged, and underscores the different ways in which we were positioned. Our relation reveals the potential for “awkward dissonance between feminist practice and the practice of the discipline” of anthropology (Strathern 1987:277). Rosita’s criticism of my attendance in the mining dialogue exposed the ways in which activists and ethnographers are differently positioned in the field. Judith (Jack) Halberstam points to a “shadow” feminism in which “subjects refuse to cohere; subjects who refuse “being” where being has already been defined in terms of a self-activating, self-knowing liberal subject” (2011: 126). By rejecting the government’s proposal in mining policy, Rosita and the activists with whom she was protesting refused to embody a subject position based on neoliberal citizenship and participation. She drew upon the same feminist practice to negate participation and authorization of the research return workshop.At once collaborating and refusing to collaborate, Rosita’s actions can be interpreted in the words of Donna Haraway (cited in De la Cadena 2015): “we do not need a totality in order to work well. The feminist dream of a common language…is a totalizing and imperial one,” (33-34). Rosita and the women’s group enact different kinds of feminist practice: speaking at crowds, blocking streets with their bodies, and refusing to be ‘appropriate’ subjects. Feminist practices have implications for politically-aligned research, enabling both convergences and divergences between activism and research. If failure can be interpreted as a modality of resistance to neoliberal discourse of heroic success (Halberstam 2011), then what might the failure to fuse activism and ethnographic research into a seamless “whole” mean?
In this essay, such failures signaled a partial connection that emerged under conditions of political division and heterogeneous activist practices. A commitment to work within circuits of partial connections embraces the awkward and messy relationships that energize and confound politically-aligned ethnographic research.
Teresa A. Velásquez is Assistant Professor of Anthropology at the California State University in San Bernardino. Her research on the intersection of mining activism and state resource policy in the Southern Ecuadorian Andes examines the reconfiguration of farmers’ relationship to their watershed. She is especially interested in the ways in which scientific and Andean knowledge practices are mobilized in anti-mining activism and the dynamics of race/ethnicity, class, and gender in the protest movement.
Bastidas, Elena P. 2005. “Women and Water in the Northern Ecuadorean Andes.” In Opposing Currents: The Politics of Water and Gender in Latin America, edited by Vivienne Bennett, Sonia Dávila-Poblete, María Nieves Rico, 154-169. Pittsburgh: University of Pennsylvania Press.
De la Cadena, Marisol. 2015. Earth beings: Ecologies of practice across Andean worlds. Durham:Duke University Press.
Halberstam, Judith. 2011. The Queer Art of Failure. Durham: Duke University Press.
Hale, Charles R. 2001. “What is activist research?” Items and Issues: Social Science Research Council 2(1-2): 13-15.
Strathern, Marilyn. 1987. “An Awkward Relationship: The Case of Feminism and Anthropology.” Signs. 12(2): 276-292.
Note about bookCase cover image: “Two women walk through the Quimsacocha wetland slated for gold mining. In Quechua, Quimsacocha means three lakes.” Photo by Kléver Calle.
A Critical Moment: Sex/Gender Research at the Intersections of Culture, Brain, and Behavior
FPR-UCLA 2016 Conference Summary
The sex/gender conference succeeded in bringing together people “with different ideas and skills, different ways of thinking, that are actually transforming the field,” observed Carol Worthman, chair of Part 3 (“What’s at Stake?”). The earlier sessions (see Parts 1 and 2) provided us with a better sense of the complexities of sex/gender; we also learned some ways to usefully deconstruct – and form new ideas about – old questions. But there’s a lot at stake, Worthman continued. In the following session, speakers addressed the theme (“What counts as adequate function?”) from a variety of perspectives and from individual to macro levels of analysis. The question regarding adequate function is critical, Worthman reminded the audience, “because a lot of what is lurking in the background is frequently this question of ‘not good enough’ or ‘not a real person,’ both exogenously, in terms of how people are viewed, and endogenously, in terms of how they view themselves” by internalizing cultural norms. This suggests the importance of recognizing culture-mind-brain “intra-actions” (Barad, 1998, p. 96, noting “the inseparability of ‘objects’ and ‘agencies of observation’”) that can perpetuate shame, fear, and other forms of suffering.
On Day 1 and 2 of the conference, FPR founder and president, Robert Lemelson, a documentary filmmaker and psychological anthropologist on the UCLA faculty, screened Bitter Honey. Shot over a seven-year period, the film explores polygamous marriages through the lens of three Balinese families headed by Sadra (2 wives), Darma (5 wives) – both working class – and the elderly Tuaji “of royal blood” (10 wives). The film addresses seven themes: love and marriage, power, violence, children, lust and infidelity, divorce, and endurance and freedom.
In Bali, 10 percent of registered marriages are polygamous, although the percent of unofficial unions is likely higher. As the film illustrates, many of these unions are formed and maintained through deep-seated power dynamics that justify men’s infidelity and restrict women’s abilities to leave. For instance, when Sadra’s second wife, Murni, finally discovered his marital status, she was already pregnant and had decided to “[accept] it . . . [because she] took the risk and . . . had to take the responsibility.” This simple statement masks a grimmer reality. Tricking women into polygamous marriages appears to be all too common. To varying degrees Sadra and Darma’s wives have learned to adapt to their surroundings, maintain jobs to support the men’s lifestyles, and raise their children (Tuaji’s wives appear to lead more comfortable lives). But the film wordlessly and beautifully unveils the pain, isolation, and sense of confinement in the wives’ situation in ways that written ethnography cannot (Lemelson & Tucker, 2015).
Hints of infidelity and domestic violence permeate the three men’s marriages. Both Sadra and Darma frequent the red light district. Brothels catering to tourists have sprouted across rural areas of Bali and are also frequented by local men. Although an estimated 25 percent of Balinese sex workers are infected with HIV/AIDS, use of condoms appears infrequent, and the risk of transmission to the men’s wives is high. Regarding domestic violence, at one point in the film the documentary team – along with Dedung, Sadra’s boss, and Anggreni, a women’s rights attorney in Bali – are compelled to stage an intervention to attempt to stop Sadra from beating his wife.
Karma is an excuse many men use to escape from their responsibilities, as Degung Santikarma – Balinese anthropologist – explains in the course of the film. In Bali, it is commonly believed that men gain more power from having more wives; this draws from the Hindu concept of Bhairawa in which lust should not be restrained, but rather allowed full expression. However, men’s power is not the only force that constrains women’s abilities to leave these marriages. While in many regions of Indonesia the divorce rate is approximately 50 percent, it is less than 10 percent in Bali. In Balinese culture, the soul of the wife is thought to belong to that of the husband’s family, into whose lineage she will reincarnate; upon divorce, women lose not only their inheritance and custody of their children, but also their soul. (An exception is a nyentana marriage in which the man marries into his wife’s family and takes on the role of the eldest son, in which case the woman retains her inheritance and custody of the children after divorce.)
Bitter Honey poignantly documents the ways in which polygamous marriages in Bali are deeply embedded in cultural dynamics that are disadvantageous to women and trap them in an iterative cycle of vulnerability. In doing so, the film challenges universalistic paradigms that depict women as “coy choosy females” looking for well-resourced mates (Brown, Laland, & Borgerhoff Mulder, 2009) and resonates with Herdt’s documentation of change among the Sambia and Borgerhoff Mulder’s work among the Pimbwe in demanding cultural and historical specificity. While a scholarly accomplishment, Lemelson’s film work is also notable for the additional sensory experiences and, in particular, the sense of emotional intimacy with others that only a filmic medium can convey. Lemelson, who also trained as a clinical psychologist, feels that the use of more cinematic elements in the construction of his films – in combination with the deep, mutually respectful relationships he enters into with his subjects, who frequently participate and provide feedback during the editing process – have allowed him “to tell richer stories about fully fleshed out individuals” in “the multiple cultural and environmental contexts that suffuse any experience” (Lemelson & Tucker, 2015, p. 17, 29). His films push us to confront human suffering and re-consider the more engaged form of anthropology of many long-term practitioners (another example of which is Afflictions, Lemelson’s series on mental illness in Indonesia). Refusing to look away, Lemelson and his team have also begun working with local organizations to set up the first gender-based violence program in Indonesia.
Tales of the Waria
The conference program also included Kathy Huang’s documentary Tales of the Waria, which focuses on four “biological men” in Makassar, Indonesia – Tiara, Mami Ria, Suharni, and Firman – who self-identify as women. The men are known locally as waria – “ a combination of the terms wanita (woman) and pria (man), which can be roughly translated as ‘male transvestite’” (Boellstorff, 2004, p. 160). Waria live openly as women, mainly engaged as performers (Tiara), in some form of salon work (Mami Ria, Suharni, and Firman), especially bridal makeup and hair styling, or as sex workers; thus, they are far more visible (and, as a “recognizable continuity” dating back to the early 1800s, far older in origin) than Indonesians who identify as gay or lesbi (Boellstorff, 2004).
Being a waria is not a matter of sexual orientation; according to Tiara, “waria exist to make this life more beautiful.” Further, “waria almost never describe themselves as a “third gender” but see themselves as men with women’s souls who therefore dress like women and are attracted to men” (Boellstorff, 2005, p. 57). Although they may take estrogen in the form of birth control pills and use injectable fillers, Tiara explains that “most warias don’t want a sex-change operation because of the teachings of Islam. We believe that we were born as men and must return to God as men.”
The film offers a humanizing portrait of the warias’ pursuit of love with a man (“every waria’s dream”), and in doing so, movingly depicts the dual sense “of belonging to (and exclusion from) national society and popular culture” (Boellstorff, 2004, p. 161) given their visible positions in society, including in the political sphere. At first glance, the love lives of the four warias “flow simply into the mold of [male] power,” to paraphrase Catherine Malabou (2015). Tiara is a performer who likens herself to Madonna or Beyoncé. Despite the general tolerance for warias in Indonesia, Tiara’s family does not openly welcome their son’s adoption of a waria identity; a former boyfriend refused to marry her because Tiara wasn’t a “real” woman and couldn’t give him children (“I was just a place to stop until he found a woman”).
Younger warias, like Suharni, juggle achieving financial security and maintaining a relationship with their boyfriends. In Suharni’s case, her boyfriend Madi remains committed even after learning of her HIV-positive status (according to Suharni, “HIV/AIDS is the most feared disease in Indonesia”), but neither is able to make enough money living in Makassar, and Suharni decides during the course of the film to relocate to Bali. The oldest of the four, Mami Ria faces a different challenge in maintaining the interest of her partner Pak Ansar, who is married with children. Pak Ansar thinks warias are “creative” and “really have a passion for life,” and his wife, Ety, appears complacent with the arrangement. But as Mami Ria has gotten older and feels less inclined to wear make-up and maintain long, feminine hair, she believes Pak Ansar’s love has waned. By the end of Huang’s film, Mami and Pak Ansar had not spoken in more than three months.
“I walk two paths”
Some warias, like Firman, opt to marry heterosexually. In an opening scene, Firman prays to God to “change [him] into a real man” because it was “impossible to go back into being a waria,” which was “a terrible [past] mistake.” Firman said his family was ashamed of him as a child (“They always got angry at me and beat me”). His father hit him hard with a rattan switch and told him “to be a man, but I wasn’t able to.” Firman is now “respected” by his family and in-laws for being a good father and husband. Though his wife Mimi has heard stories of his past, she said she accepts him because she believes “he’s left his old ways behind” and is now committed to “making a future together . . . [and] wants to change.” Through tears, she adds, that Firman continues to go on late outings with his waria friends; though he brushes it aside as work, she cries and worries, not sleeping until he returns. Although Firman reaffirms his commitment to his family, he tells Huang that he nonetheless misses the warmth of a male body and contrasts the “ecstatic” feeling of “soaring into the sky” with the reality of waking up next to his wife and children.
Together, the four narratives illustrate the multiple ways in which warias pursue love in Indonesian society – not as a “third gender,” but occupying “a gendered subject position haunting maleness” (Boellstorff, 2004, p. 183) – and, like the wives in Bitter Honey, have learned to deftly negotiate the marginalizing social and cultural dynamics that continue to bound their experiences.
Our “volatile” anatomy
Most warias recount “atypical play” as children (“I hung out with the girls and played jump rope, played with dolls”; Boellstorff, 2004, p 166), either because their parents didn’t prohibit it or, as many attest, they were simply born “with the soul of a woman.” Their various reflections – in some cases, biologically oriented; in others, social – for the basis of their childhood toy preferences resonated with neuroscientist Melissa Hines’s talk (“Early Androgen Exposure and Human Gender Development: Outcomes and Mechanisms”). Hines focuses primarily on the role of testosterone in influencing human gender development; part of her research program explores gender typical play.
According to Hines, the brain is not hardwired to be male or female. But neither is gender identity wholly a function of “self-socialization or socialization by others” postnatally. Both viewpoints are partial and thus “flawed” because neither takes the other into account. Our anatomy, as Elizabeth Wilson (2015) argues in Gut Feminism, is “volatile enough” to produce many “multifaceted . . . destinies.”
Four factors influence human gender development: genetic factors, gonadal steroids (particularly testosterone during early development), social reinforcement, and self-socialization, Hines continued. Her remarks focused on the influence of testosterone on brain and behavior, whose “enduring masculinizing and defeminizing effects during early sensitive periods of rapid brain development” have been well-studied in non-human animals (Hines et al., 2016a).
Prior to puberty, testosterone is higher in males than in females during two periods of rapid brain development: prenatally (from about 8–24 weeks) and postnatally (also referred to as “mini-puberty,” from about 1–6 months; Hines et al., 2016b). In humans, evidence suggests the first (prenatal) elevation influences three main behaviors that differ by sex (1) gender identity, (2) sexual orientation, and (3) gender-typical play. The second elevation contributes to later gender-typical play in particular.
How can we study the influence of hormones in human development?
The strongest evidence comes from studies of individuals with genetic conditions. Hines’s research focuses mainly on congenital adrenal hyperplasia (CAH), a genetic disorder. CAH disrupts the adrenal glands’ ability to make cortisol. The resulting dysregulation in cortisol-mediated adrenocorticotropic (ACTH) secretion by the pituitary gland causes the overproduction of adrenal androgens, beginning prenatally. Despite some gender ambiguity in external genitalia at birth due to prenatal exposure to high levels of testosterone, girls with CAH, who are treated postnatally with glucocorticoids, are usually raised as girls. But girls and women with CAH show differences in all three gendered behaviors.
Hines discussed toy preferences, which her research has related to both prenatal androgen exposure and gender-related models (persons of the same or opposite sex choosing gender-neutral objects) and labels (being told certain objects were “for girls’ and others were “for boys”; see Hines et al., 2016a). Girls with CAH spent more time with the boys’ toys and less time playing with girls’ toys than their unaffected relatives. To determine whether the effects were due to socialization (e.g., parent support of children’s toy preferences), Hines and colleagues also studied toy preferences among vervet monkeys and found similar sex differences (Alexander & Hines, 2002; see also Hassett, Siebert, & Wallen, 2008). Further, girls with CAH appeared to be less susceptible than other children to same-sex modeling and to gender labels. To Hines and colleagues, this suggests an interaction between prenatal androgen exposure and cognitive processes related to gender identity. Her group also measured urinary testosterone in infants during “mini-puberty,” which predicted male-typical play behavior at ages 3–4 (Hines et al., 2016b). Hines concluded that testosterone contributes to the development of human gender-related behavior, but “there are many dimensions of gendered behavior and different dimensions are influenced by different combinations of factors,” including self-socialization in response to same-gender models or gender labels as wells the influence of parents and peers.
Next, the focus widened as anthropologist Hillard Kaplan (“Embodied Capital and the Sexual Division of Labor: Evolution of Multiple Time Scales”) presented data on societies that practice hunting and gathering or a mix of foraging and horticulture. These societies offer “one particular lens on the evolved biology of our species,” according to Kaplan. “Comparisons with modern societies can shed light on the interactions of genes, environments, and lifestyles on behavior, health, and longevity and, in particular, . . . modern health conditions.”
Kaplan briefly reviewed fertility, mortality, and net caloric production (“how much food you produce less how much you consume”). Marriages in hunter-gather societies are mostly monogamous, reflective of “some strong complementarities in the life history of the two sexes,” which is relatively rare among other mammals. Women are primarily committed to maternal caregiving and men to learning- / skill-intensive hunting (the peak in male muscular strength well precedes the peak in men’s hunting ability). Men provide most of the surplus calories in the form of hunted meat, a new and valuable resource from an evolutionary standpoint, but one that is “very expensive in terms of care.” Kaplan’s talk helped us understand how men’s and women’s pursuits are delicately balanced (“the value of what women do for their families depends upon what the men do, and vice versa, and their life histories become linked”). The sex difference results because childbearing women have less time (between births) to acquire the necessary skills to be successful at hunting.
The remainder of the talk focused on the Tsimané of Bolivia, a foraging-horticulturalist population that still follows a “traditional subsistence pattern.” In particular Kaplan discussed various adaptations as men and women age. Beyond the mid-thirties, men tend to hunt less and farm more. As women age, they also engage more in agricultural activities, becoming major contributors to total caloric production. Overall, resources flow downward from grandparents to their children and grandchildren – or, with fewer dependents, to closely related, frequently younger households (Hooper, Gurven, Winking, & Kaplan, 2015). Kaplan uses a unified model (time-path of production and inclusive fitness theory) to account for these “exquisitely patterned” flows. Elsewhere he has likened them to a form of “indirect” reproduction, “which has allowed selection to favour the evolution of significant post-reproductive lifespan” (Hopper et al., 2015). He particularly emphasized the role of grandfathers (as well as grandmothers) in the downward flows to grandchildren; these men tend not to seek out new reproductive relationships. Like Monique Borgerhoff Mulder, he stressed the importance of marriage (and the relative rarity of polygamy), especially the importance of choosing a good partner, and of cooperation between the sexes and in terms of intergenerational investment. The final segment of his talk focused on the adaptability of the division of labor to changing social and economic contexts and gendered effects on health and mortality. Today, women tend to live longer than men but report worse health, reflecting the interaction of ontogeny and selection for certain “physiological and psychological pre-commitments.”
Cultural and medical anthropologist Marcia Inhorn’s talk (“Male Infertility, Assisted Reproductive Technologies [ART], and Emergent Masculinities in the Arab World”) focused on the globalization of technologies addressing male infertility, which Inhorn argues has been accompanied by the “emergence” of new forms of manhood in the Arab Muslim Middle East.
Inhorn’s work challenges stereotypes of Middle Eastern men as “fanatically religious” and “brutal oppressors of women.” Her long-term ethnographic research illuminates transformed attitudes about love, marriage, and fatherhood. Inhorn’s large amount of data, which is pooled from more than 330 Arab men from 14 Arab countries over 15 years, demonstrate a reality that bears no resemblance to caricatures of Arab Muslim men in the media. For the most part, the men are family-oriented, seek love/partnership in marriage, and highly value fatherhood.
Regarding the reproductive piece, in vitro fertilization (IVF), a “platform technology,” has been joined by an “unbelievable array” of ARTs, including third party reproductive assistance, gestational surrogacy, cryopreservation (freezing or vitrification), preimplantation genetic diagnosis (PGD), human embryonic stem cell (hESC) research, and even the possibility of human reproductive cloning. Inhorn’s talk focused on intracytoplasmic sperm injection (ICSI), a variant of IVF designed specifically to address male infertility, which she described as an “underappreciated global reproductive health problem.” Across the world about 9–10 percent of couples are infertile, and about half of those cases are due to male infertility. In the Middle East, however, male infertility rates are much higher, primarily for genetic reasons due to high rates of marriages among kin (sub-Saharan Africa has even higher rates due to reproductive tract infections and various other complications, according to the World Health Organization). Before ICSI, male infertility was highly stigmatizing, due to the conflation of infertility and sexuality, as well as incurable. ICSI addresses low sperm count by directly injecting a single spermatozoon into the oocyte.
In the Sunni-majority Muslim countries, which prohibit the use of donor sperm (or any third party insemination), the advent of ICSI in the early 1990s was “a watershed event.” After years of struggle, men in the Middle East view ICSI as a “hope technology” (although Inhorn pointed out that it also shifts the genetic burden onto their male offspring). The “double” emergence – ICSI and “emerging changes in gender relations and, ultimately, masculinity” – arises by making long-term love-marriages and reproduction viable for more men.
Overall, the collection of talks and films presented human life on multiple time scales. The film Bitter Honey suggested a disintegrating past (the children in the polygamous families seem averse to the practice), while Tales of the Waria and Marcia Inhorn’s talk provided glimpses of a more generous future that for some – like Mami Ria and Sadra and Darma’s wives, with few social anchors –remains out of reach. Hillard Kaplan and Melissa Hines grounded us in evolutionary and biological histories that deftly wove the social and biological together. While all the elements may not fit together perfectly, the composite picture addressing what counts as “adequate function” drawn from many disciplines and interdisciplinary programs, is far richer and more dynamic than we anticipated. Our final blog post addresses what’s at stake.
Constance Cummings, PhD, is project director of the Foundation for Psychocultural Research and a co-editor of Formative Experiences: The Interaction of Caregiving, Culture, and Developmental Neurobiology (CUP, 2010), and Re-Visioning Psychiatry: Cultural Phenomenology, Critical Neuroscience, and Global Mental Health (CUP, 2015).
Kathy Trang (@kathytrang1) is a doctoral student in biocultural anthropology at Emory University and co-editor for the Society for Psychological Anthropology column on Anthropology-News. Her current research focuses on the pathways through which health disparities are produced among socially marginalized groups in Hanoi, Vietnam. Prior to graduate school, she worked at the Foundation for Psychocultural Research and completed her undergraduate studies in psychology and biology through the Early Entrance Program at CSULA.
Libby Udelson is a recent graduate of the University of California, Berkeley, where she received a BS in Environmental Economics & Policy and a BA in Development Studies.
Alexander, G. M., & Hines, M. (2002). Sex differences in response to children’s toys in non-human primates (cercopithecus aethiops sabaeus). Evolution and Human Behavior, 23, 467479. http://www.ehbonline.org/article/S1090-5138(02)00107-1/abstract
Barad, K. (1998). Getting real: Technoscientific practices and the materialization of reality. differences: A Journal of Feminist Cultural Studies, 10(2), 87–128.
Boellstorff, T. (2004). Playing back the nation: Waria, Indonesian transvestites. Current Anthropology, 19(2), 159–195. http://dx.doi.org/10.1525/can.2004.19.2.15
Boellstorff, T. (2005). The gay archipelago: Sexuality and nation in Indonesia. Princeton, NJ: Princeton University Press. http://press.princeton.edu/titles/8103.html
Brown, G. R., Laland, K. N. & Borgerhoff Mulder, M. (2009). Bateman’s principles and human sex roles. Trends in Ecology & Evolution, 24(6), 297–304. http://dx.doi.org/10.1016/j.tree.2009.02.005
Hassett, J. M., Siebert, E R., & Wallen, K. (2008). Sex differences in rhesus monkey toy preferences parallel those of children. Hormones and Behavior, 54(3), 359–64. http://dx.doi.org/10.1016/j.yhbeh.2008.03.008
Hines, M., Pasterski, V., Spencer, D. Neufeld, S. Patalay, P., Hindmarsh, P. C. . . . Acerini, C. L. (2016a). Prenatal androgen exposure alters girls’ responses to information indicating gender-appropriate behavior. Philosophical Transactions B, 371, 20150125. http://dx.doi.org/10.1098/rstb.2015.0125.
Hines, M., Spencer, D., Kung, K. T.-F., Browne, W. V., Constantinescu, M., & Noorderhaven, R. M. (2016b). The early postnatal period, mini-puberty, provides a window on the role of testosterone in human neurobehavioural development. Current Opinion in Neurobiology, 38, 69–73. http://dx.doi.org/10.1016/j.conb.2016.02.008
Hooper, P. L., Gurven, M., Winking, J., & Kaplan, H. S. (2015). Inclusive fitness and differential productivity across the life course determine intergenerational transfers in a small-scale human society. Proceeding of the Royal Society of London B: Biological Sciences, 282(1803), 20142808. http://rspb.royalsocietypublishing.org/content/282/1803/20142808
Lemelson, R., & Tucker, A. (2015a). Lemelson, R., & Tucker, A. (2015). Steps toward an integration of psychological and visual anthropology: Issues raised in the production of the film series Afflictions: Culture and Mental Illness in Indonesia. Ethos, 43(1), 6–39. http://dx.doi.org/10.1111/etho.12070
Malabou, C. (2015). One life only: Biological resistance, political resistance. Critical Inquiry. This essay was originally published in French as Catherine Malabou, “Une Seule Vie: résistance biologique, résistance politique,” Esprit (January 2015), 30–40. http://criticalinquiry.uchicago.edu/one_life_only/
Wilson, E. A. (2015). Gut feminism. Durham, NC: Duke University Press. https://www.dukeupress.edu/Gut-Feminism
The World Health Organization recently released its long-awaited final report on the organization’s response to the 2014 Ebola epidemic. The report opens by explaining that, however tragic the epidemic was, it also provides us with a chance to learn. “The sole consolation of the Ebola disaster is that it has galvanised the world into analyzing the failures and ensuring that it is better prepared for the next global health threat,” it states. “Crisis is hardship but also opportunity.”
The release of the report reminds us that alongside the epidemiological end of an epidemic, there is also an administrative end. In the case of the 2014 Ebola epidemic, we can mark the date of the latter much more sharply than the former. On March 29th of this year, the Director-General of the World Health Organization, Margaret Chan, officially terminated the epidemic’s status as a “public health emergency of international concern.” This was a classificatory shift meant to signify a change in how the disease is to be governed. Even as cases of Ebola in West Africa continued to appear, the end of the emergency signaled a return to normalcy, the entry into a period of reflection on the meaning of the event—the “epilogue” of the epidemic narrative (Rosenberg 1989), in which retrospective moral judgment can be made: who is to blame? What should we have done differently?
A surprisingly simple answer to this question was offered last year by the Swedish statistician Hans Rosling, who said: “If you want to blame somebody for this epidemic,” he said, “blame me. It was my mistake.” Rosling had been among those experts who, in the summer of 2014, advised the World Health Organization against declaring the epidemic to be a global health emergency—a decision that has since been blamed for the slow response of international authorities to the outbreak, and for its explosion into a global health catastrophe by the early Fall.
At the time, Rosling argued that such a declaration would divert scarce health resources in the region away from more epidemiologically significant problems such as malaria, diarrheal diseases and bacterial infections. He shared the view of many experts that Ebola was a “small problem” in comparison to these less sensational but much more widespread afflictions. There was a solid epidemiological rationale to this position: Ebola had never before caused more than a few hundred deaths. It was understood to be a highly dangerous, but ultimately manageable disease.
There are, of course, a number of reasons why the outbreak proved much worse than international health authorities initially anticipated: the breakdown of basic health infrastructure in afflicted areas, public distrust of officials in a context of recent civil conflict, poor communication among disparate response organizations, and so on. And Rosling’s mea culpa, in the wake of the epidemic, was part of a larger process of retrospectively apportioning blame. Some of this blame was diffusely targeted at the “global community” for its slow and tepid response to the outbreak. But gradually an effort has built up to find more specific sites of responsibility. Much of this process has taken the form of committee investigations. In addition to the WHO Internal Review Committee, at least five other panels of experts have issued official reports that diagnose sources of failure in the international response to the outbreak and recommend reforms to prevent the occurrence of another such catastrophe.
The effort to officially allocate blame in the wake of a catastrophic outbreak is not new. We can date the genre of the “Commission of Inquiry” report at least back to mid-nineteenth century investigations of cholera outbreaks in Europe. In 1854, for example, the Cholera Inquiry Commission appointed by the British Parliament found that authorities in the town of Newcastle had ignored the advice of medical experts as the disease approached:
“That ‘the continued vigilance on the part of the authorities,’ which according to the report of that medical committee, had been ‘proved to be necessary in order to guard against a further and more destructive outbreak’—such as actually occurred last autumn—does not appear to have been exercised by those authorities.’”
The practice of the Commission of Inquiry comes into play when a collective misfortune is understood to be at least in part the result of a governmental failure—a wrong decision made or an improper action taken. The epidemic, or at least its surprisingly devastating consequences, is seen in retrospect as “a preventable tragedy.” The post-hoc investigation assumes the temporal-causal framework of risk (Luhmann 1993): what might have seemed to be an external source of danger—the onset and course of an epidemic—is treated instead as the product of an internal decision. The task of the Commission is to pinpoint the locus of failed action in order to target future reform measures.
But alongside its similarity to this historical schema, the post-hoc assessment of the response to Ebola in 2014 also has some distinctive features. One of these features is the sheer multiplicity of commissions of inquiry that have been established. The World Health Organization has issued two reports, and other groups that have weighed in include the United Nations, the World Bank, the World Economic Forum, the US National Academy of Medicine, and a consortium from Harvard and the London School of Tropical Medicine and Hygiene. This proliferation of reports indicates—in contrast to nineteenth century Britain—that in the case of the 2014 Ebola epidemic, it is not clear what governmental agency or body of experts has jurisdiction over the management of epidemic response at a global scale. Who exactly comprises “the global community” that, as one critique put it, “was sluggish in reacting to the crisis, with inadequate coordination and confused decision making”?
Another distinctive feature of the post-Ebola report is the type of diagnosis it seeks to make. The reports all center on a failure of preparedness. The global community was exposed by the epidemic as “altogether unprepared,” concluded the independent panel of experts convened by Harvard and the London School of Tropical Medicine and Hygiene. The outbreak revealed “gaping holes in preparedness,” stated the National Academy of Medicine in its report, the Global Health Risk Framework. Multiple failures “demonstrated that the world remains ill-prepared to address the threat posed by epidemics,” said the report from the UN High Panel on the Global Response to Health Crises. And according to the WHO’s Internal Review Committee, “Ebola starkly revealed the fact that we still remain ill-prepared in the face of a major public health emergency.”
The application of the concept of preparedness to infectious disease outbreaks is relatively recent. The theme of “emergency preparedness” as a governmental problem initially arose in the context of economic mobilization for total war in the mid-twentieth century United States (Collier and Lakoff 2015). Mobilization preparedness asked: what kinds of anticipatory measures—the stockpiling of scarce materials, tools to manage the allocation of resources, plans for civil defense—must be put in place before the onset of war? Famously, scenario-based planning was invented during the Cold War as a technique of preparing for the unprecedented catastrophe of nuclear conflict. The broader field of emergency management grew out of such planning methods, and included medical supply stockpiling (see figure 1).
Figure 1: the 1950s packaged emergency hospital with its stockpiled medical supplies
Many of the techniques associated with the field of emergency management were assimilated into the field of “global health security” over the course of the 1990s and early 2000s. A key moment for this was the 2005 adoption by the World Health Assembly of the revised International Health Regulations (IHR), which were officially released in 2007 under the rubric of “global public health security” (Lakoff 2010). The IHR institutionalized a view of the future of infectious disease as characterized by the ongoing but unpredictable emergence of novel pathogens. And the problem for health authorities was to detect and contain such outbreaks before they became international catastrophes. It was at this point that the retrospective assessment of a failed response began to pose the question: are we prepared?
To ask the question was to answer it. As summary of the IHR Review Committee on the WHO’s response to the 2009 H1N1 (swine flu) pandemic—in which the organization had been accused of over-reacting to the outbreak by declaring a global health emergency—put it: “We were lucky this time, but as the report concludes, the world is ill-prepared for a severe pandemic or for any similarly global, sustained and threatening public health emergency.”
This is the diagnostic framework of the post-hoc report, in the era of emerging pathogens. In the assessment process, the outbreak of a given disease—whether H1N1 or Ebola—loses its specificity and is brought into a shared space of anticipation, inhabited by a range of diseases, some already known and some as-yet to appear. The generic category is the “public health emergency of international concern” (PHEIC), one of the innovations of the revised International Health Regulations (see figure 2).
Figure 2: The IHR decision tool.
The PHEIC is a decision tool for use by national and international health authorities in assessing whether a given health event should be considered a potential global health emergency. While it may seem like an obscure technocratic instrument, this guide for decisions about how to classify reported health-events has come to the fore in discussions of accountability for the catastrophic scale of the 2014 Ebola epidemic. As the WHO’s Ebola Interim Assessment Panel put it in May 2015, “It is still unclear to the Panel why early warnings, approximately from May through to July 2014, did not result in an effective and adequate response.”
In this panel and in other recent commissions of inquiry, the question has repeatedly been posed: why didn’t WHO declare an official emergency early enough that the outbreak could have been contained, in the late spring or early summer 2014? Given the structure of the post-hoc assessment, which seeks to locate the mistaken decision that led to a preventable disaster, this is a tempting moment to focus on. One potential answer is simply that, epidemiologically speaking, as of the spring 2014, Ebola was “known” not to pose the specter of global catastrophe: as noted above, it was thought to be a relatively easily managed and small scale disease. This assumption was the source of Hans Rosling’s confession of culpability mentioned above, and it was echoed in comments made by WHO officials at the time. As one said in April 2014, “We know very well how this virus is transmitted, we know the kinds of steps that can be taken to stop the transmission of the virus.” We might then consider the WHO’s decision against emergency classification a failure of epidemiological imagination. The broader point, though, is that the practice of accounting for failure works retrospectively to assimilate Ebola into a more general category of event, the “global health emergency.”
While the post-hoc assessment is a means of allocating blame, in retrospect, for a preventable disaster, it is not only that. Let us return, in closing, to the WHO final report that was unveiled last week in Geneva. It is actually a report not on the response to Ebola in general, but specifically on the “role of the International Health Regulations” in the organization’s response. When giving the internal review committee its charge in August 2015, Director-General Chan instructed the committee to focus not so much on the past as on the future: “Our challenge now is to look for improvements that leave the world better prepared for the next inevitable outbreak.” In fact, she continued, Ebola was “not a worst-case scenario,” despite the daunting scale of the disaster it had wrought. Rather, officials needed to be ready for the onset of something even more potentially catastrophic. “Preparedness for the future,” she said, “means preparedness for a very severe disease that spreads via the airborne route or can be transmitted during the incubation period, before an infected person shows tell-tale signs of illness.” The image was that of an uncontainable variant of SARS or a humanly transmissible strain of H5N1 (avian influenza)—the specters that initially galvanized international health officials to implement a system of global health security (Caduff 2015; Keck 2010; MacPhail 2014).
In looking at the various assessments that have been produced in the wake of the Ebola epidemic, it becomes clear that they serve not only as administrative “epilogues”—that is, as ways of achieving closure on an epidemic narrative. They also seek to map out a future of organizational transformation. As the Interim Assessment Panel put it in making its post-Ebola recommendations for reform, “The world cannot afford another period of inaction until the next health crisis.”
Once Ebola is assimilated to the more general category of “global health emergency,” the retrospective critique of failure serves as a means of honing a better diagram of detection and response to a future emerging pathogen. The WHO final report addresses questions such as: who will be the key organizational actors? Where will the necessary funds for emergency response come from? How will poor countries be incentivized to develop “core capacities” for managing outbreaks? The diagnosis of a failure of past preparedness, then, can only point toward a hoped-for future of better preparedness. However, since one does not yet know what the next pathogen will be, one can only anticipate the possibility that we may once again find ourselves to have been unprepared.
Andrew Lakoff is Associate Professor of Sociology, Anthropology and Communication at the University of Southern California. He is the author of Pharmaceutical Reason: Knowledge and Value in Global Psychiatry and co-editor of Biosecurity Interventions: Global Health and Security in Question.
Caduff, Carlo. 2015. The Pandemic Perhaps: Dramatic Events in a Public Culture of Danger. Berkeley: University of California Press.
Collier, Stephen J. and Andrew Lakoff. 2015. Vital Systems Security: Reflexive Biopolitics and the Government of Emergency. Theory, Culture and Society 32:2, 19 – 51.
Keck, Frédéric. 2010. Un Monde Grippé. Paris: Flammarion.
Lakoff, Andrew. 2010. Two Regimes of Global Health. Humanity: An International Journal of Human Rights, Humanitarianism, and Development, 1:1, pp. 59-79.
Luhmann, Niklas. 1993. Risk: A Sociological Theory. New York: Aldine de Gruyter.
MacPhail, Theresa. 2014. The Viral Network: A Pathography of the H1N1 Influenza Pandemic. Ithaca: Cornell University Press.
Rosenberg, Charles E. 1989. What is an epidemic? AIDS in historical perspective. Daedalus 118:2 (Spring), 1 – 17.
Many people probably saw the news that Facebook allegedly privileges left-leaning stories in its trending news section, a story broken by Gizmodo at the beginning of this month. The BBC builds on this report to explore how what we see online (and the various ways in which this get tailored more and more specifically to us) affects our behavior. “[I]t is worth remembering that the designers of the technology we use have different goals to our own – and that, whether our intercessor is an algorithm or an editor, navigating it successfully means losing the pretense that there’s any escape from human bias.”
In a long article in The Verge, authors Catherine Buni and Soraya Chemaly detail the hidden world of content moderation on the Internet. They outline a history of moderation, and the levels of seriousness with which which various content hosts approach moderation (Pinterest versus Reddit versus Facebook, etc), raising questions along the way about the role of moderation in politics (when does the newsworthiness of a video depicting violence outweigh general guidelines prohibiting violence, what role do moderators play, wittingly or no, in social and political movements), free speech and the legal implications and histories of moderation, the unpaid and unrecognized labor that users themselves do to moderate content, and the undervaluing and off-shoring of the very grueling and mentally taxing work of moderation. The Secret Rules of The Internet
The Guardian has an article about the secrecy of research about online harassment and bullying, in which the author argues that Victorian social movements for food safety can teach us something about how to make the Internet a safer place for everyone, while acknowledging the that, “The underlying causes of online harassment can’t be solved by detecting and banning a few toxic commenters.”
In fact, a great number of recent articles have worked to illuminate the fact that data itself is, of course, not unbiased, and that decisions made based upon big data frequently end up further entrenching historical and systemic inequalities. For instance, Amazon says it decides where to offer Same-Day Delivery based upon the number of Amazon Prime users in a particular area; Bloomberg finds that these maps fall along socioeconomic and racial fault lines within and among cities. ProPublica has an article about the algorithms that are used to do “risk assessment” – a score that is supposed to predict how likely someone convicted of a crime is to recommit; these algorithms, they find, are racist and wildly inaccurate. Quartz, following up on ProPublica’s report, has a few other examples of how “the big data revolution is magnifying how racist we are.”
Death by GPS is an article in Ars Technica about how GPS is changing our brains, the way we process space, and make decisions. It also touches on the phenomenon of people relying so much on their GPS that they do not recognize that it might be leading them into danger. In this essay in Aeon, the author considers how and why we continue to insist on the metaphor likening our brains to computers (to which they bear no real resemblance) and explores a brief history of what our brains used to be likened to—clay, machines, etc.—and why.
Shifting gears slightly to more health-related news, The Atlantic has a short but interesting article on the World Community Grid, which anyone can sign up for and donate their “spare” computational power to solve very large computing problems—in this case “checking a library of 100 million chemical compounds to see how each individually reacts to a model of Zika proteins.”
Quartz has a long article on allergies, a history of the theories to explain them, as well as an in-depth look at a few immunologists who are proposing a new theory—allergies as alarm system rather than overreaction. And, The Guardian has an article on planetary health and its relation to epidemic prevention and treatment; “With planetary health, we have an opportunity to redefine prevention to include upstream solutions that safeguard the environment.”
Unrelated but noteworthy:
In a nod to Geertz’s the difference between a wink and a twitch (and tangentially related to last month’s Web Roundup), Moira Weigel in The New Republic argues that the ability to flirt well and appropriately is the challenge to determine whether machines can learn, and concludes that the efforts being made to teach robots to flirt will eventually mean they can be employed for jobs requiring emotional, not just physical, labor. In another interesting articles, in the New York Times, Weigel argues that there is a relationship between the shift in our economic and romantic lives; “If you want to understand why “Netflix and chill” has replaced dinner and a movie, you need to look at how people work.”
538 – Who Will Debunk the Debunkers? A quirky and interesting article about myths and super-myths.
The Guardian – The foul reign of the biological clock
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.
Doherty, T., Sanders, D., Goga, A. and Jackson, D. 2011. Implications of the new WHO guidelines on HIV and infant feeding for child survival in South Africa. Bulletin World Health Organisation 2011. 89: 62-67.
Hinde, K. and German, J.B., 2012. Food in an evolutionary context: insights from mother’s milk. Journal of the Science of Food and Agriculture, 92(11), pp.2219–2223.
Lupton, D. 2000. ‘A love/hate relationship’: the ideals and experiences of first-time mothers. Journal of Sociology. 36(1): 50-63.
Murphy, E. 1999. ‘Breast is Best’: Infant feeding decisions and maternal deviance. Sociology of Health and Illness. 21(2): 187-208.
Neu, J. and Walker, W. 2011. Necrotising Enterocolitis. The New England Journal of Medicine. 364(3): 255-264.
Schmied, V. and Lupton, D. 2001. Blurring the Boundaries: Breastfeeding and Maternal Subjectivity. Sociology of Health and Illness. 23(2): 234-250.
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.