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Science, Medicine, and Anthropology
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Orkideh Behrouzan’s Prozak Diaries: Psychiatry and Generational Memory in Iran by Dina Omar

22 Août 2017 - 9:36pm

Prozak Diaries: Psychiatry and Generational Memory in Iran

Orkideh Behrouzan

Stanford University Press, 2016, 328 pages

 

Orkideh Behrouzan’s first ethnographic endeavor, Prozak Diaries (2016), explores a question that has provoked much interest in the Middle East in recent years: what’s with all the talk about depression nowadays? The influence of Western clinical psychiatry seems to traverse language: the Farsi word afsordegi, for example, is often substituted by ‘depreshen.’ Prozak Dairies is a multifaceted exploration of the pervasiveness of depreshen talk, or the use of psychiatric language more generally, in Iranian society. The main thrust of Prozak Diaries considers the extent to which modern clinical psychiatric language has become vernacular—gradually normalized within Iranian popular culture and public discourse and co-constitutive with trends in psychiatric treatments and scholarly debates. Behrouzan identifies depreshen, as well as other psychopathologies such as attention deficit hyperactivity disorder (ADHD) and post traumatic stress disorder (PTSD), as diagnoses that have grown in popularity over the past three decades. She then follows the many elusive manifestations of psychiatric discourses and therapeutic practices amongst Iranians. Behrouzan asks questions that are not only relevant to Iranians but which also reflect global trends pertaining to increased rates of prescribing and consuming psycho-pharmaceuticals, an adoption of American clinical language, and an acceptance of an agenda standardized by American pharmaceutical companies. How, she asks, has the normalization of the psychiatric vernacular engendered new ways “of knowing, interpreting, and perceiving oneself in the world?” How might the contemporary psychiatric vernacular open up new ways of expressing mental or emotional conditions in Iran? In what ways has this vernacular replaced older forms of expression; and how might it preclude alternative avenues of self-expression (p. 24)?

Orkideh Behrouzan is a doctor of psychiatry as well as a medical anthropologist. Her scholarship is principally interdisciplinary, an approach which Behrouzan argues is under-practiced yet “crucial” to understanding and engendering “new, culturally appropriate space for conceptual and practical innovations in mental health care” (p. 217) In this sense, Prozak Diaries is a milestone for its approach to understanding contemporary trends in mental health practices and discourses, in the Middle East and beyond. Behrouzan speaks to patients and clinicians. She examines debates among practitioner-academics of psychiatry as well as debates that take place on social media platforms. She outlines trends in the psycho-pharmaceutical industry and reads these trends alongside media and cultural analysis. She examines the role of mental illness “anti-stigmatization,” “education,” or “awareness” campaigns. She recounts personal narratives and testimonies told to her by people who self-identity as suffering from mental illnesses; she also includes stories of people who write about their own struggles with mental health in the Iranian blogosphere—what Behrouzan calls Weblogestān. In this sense, Behrouzan weaves together, “anecdotes, life stories, dreams, interviews, and past and present narratives” so as to provide better insight into individual experiences with mental health and emotional struggles. She represents individual experiences and insights in juxtaposition with larger trends in political-economy, social theory, and institutional trajectories. Clearly influenced by Veena Das’ approach to ethnographic writing, the stories and expressions that take center stage in Prozak Diaries stand in as an alternative to an authorial master narrative based on epidemiological data (p. 7). The interlocutors, characters, and stories that enliven Prozak Diaries span generations, expertise, political and economic positions. In this sense Behrouzan does a good job studying “up, down and sideways” so as to capture various generational, geo-political, economic and sociocultural positions, as well as how power and control operate across them (Nader 1972).

The book begins with a short account of the project from the perspective of the anthropologist; each subsequent chapter concludes with a similar account from the perspective of the interlocutors that give the book vitality: the Poet-Satirist, Freud, The Counselor, the Student, the Blogger, the Mother, and the Medical Intern. The first chapter is a general overview defining the contours and questions that are guiding Behrouzan’s project. Chapter two is a comprehensive historical account of Iranian institutions that chronicles major events, debates, and pedagogical shifts which occurred within Iranian hospitals and universities. These shifts and debates demonstrate the extent to which academic theories and medical therapies shape how psychiatry in Iran is understood and represented in mass. Behrouzan discusses at length the ways in which contrasting and oftentimes conflicting orthodoxies play out within Iranian institutions and among prominent public intellectuals, clergy, and mental health practitioners. The chapter begins with the seeds of modern psychiatry that were planted in Ruzbeh Psychiatric Hospital during the 1930s and 40s. There was nothing particularly special about the introduction of psychoanalytic theory and the absorption of clinical psychiatric practices and therapies in Iran. The phenomenon in Iran coincided with the emergence of new theories that were being developed and tested by European psychoanalysts such as Sigmund Freud and Carl Jung around the same time. The intellectual and practical implications of European psychoanalysis inevitably engendered vigorous debate in Iran. Scholars, physicians, and public intellectuals began to explore and contend with clinical psychiatry models emerging from Euro-American contexts in relation to Shi’ite doctrine and ritual which, according to Behrouzan, tendered to valorize sacrifice, stoicism, and martyrdom. Clinical models were also explored in relation to poetic or Sufi renderings of madness, asceticism and transcendence—mystical and alchemical traditions deeply rooted in Persian literature and the Islamic philosophical sciences.

In chapter three Behrouzan describes how seemingly incommensurable values and worldview are presented as such and how they play out in actuality. This chapter gives a rundown of how psychiatric illness has been represented over the last three decades in five domains: (1) in mass education or public awareness campaigns, (2) in the media and in particular in mental health talk shows national television, popular television shows, (3) in statistical or epidemiological research, (4) in public policy, and (5) in prescription drug patterns and marketing. The minutia of the contradictions outlined in the first three chapters of the book are clearly analyzed in chapters four and five. Chapter four explores how individuals express their own political and psychiatric subjectivities. What shines most through chapter four is how individuals use public forums to justify, legitimize or make peace with medicating—how people may be critical of privilege and take counter-hegemonic stances while also conceding that they are taking advantage of a privileged position and benefiting from a hegemonic pharmaceutical industry. Chapter five delves into an analysis of collective versus individual pathologies, dystopia and melancholia. This chapter contends with the limitations of the Diagnostic and Statistical Manual of Mental Disorders (DSM); it also shows, through examples, the extent to which Iranian mental health practitioners and the general public began to adopt methods, concepts, and terminology from the DSM since the 1979 Revolution. Again, Behrouzan does not try to iron out the paradoxes of the 1979 Revolution and how it marked, at least on a symbolic level, a qualitative shift where criticism of Western or imperialist sentiments became the new convention. Rather, Behrouzan shows that while Iranian intellectuals and public figures fashioned themselves as a counter force to Western imperialism they were simultaneous adopting discourses (in this case the medical the clinical psychiatric frameworks like the DSM) that make possible a reliance Western free market logics (in this case psychopharmacological therapies). The importation of these frameworks necessitated that categorization of psychopathologies be narrowly applied to individuals. Chapter five explores how individuals who are dependent on mental health medications internally grapple with the external contradictions of how mental health is discussed and understood in their society.

One of the most profound undercurrents in this book is the subtle suggestion that Western psychoanalytic paradigms do not hold open enough space to account for collective dysphoria. Behrouzan provides many examples of how poetry and philosophical texts written in the past call attention to modes of expression that were once capable of epitomizing collective sentiments about loss, dysphoria, or melancholia. However, Behrouzan also provides many examples of how references to these texts have been appropriated for marketing purposes, how they that been utilized to support interests that ally with neoliberal or transnational economic interests. In this economy, outwardly discussing and representing ones’ individual struggle with depression is often advertised as a brave or courageous act precisely because it is considered taboo. What is considered “taboo” becomes folded into a kind of marketing strategy that celebrates confessional narratives about suffering through mental health pathologies. The individual act of discussing ones’ depression in the public sphere is plugged into a framework that characterizes mental health issues as taboo and characterizes discussing taboos as brave – this framework prioritizes individuals and their role in destigmatizing psychopathologies like depression (pp. 21, 81,106, 107, 117). The ability to speak of a larger collective dysphoria or a longer continuum of loss and pain, however, is lost within this framework. Individuals who are taking mental health medication and telling their stories in the book do express a kind of meta-awareness of this phenomenon; for them, they realize that underneath their individual diagnosis and the medication they use to treat it “lingers the ghost of collective losses, of loved ones, of integrity, of the social fabric of life itself.” (p. 117). Ultimately, these middle chapters of the book argue convincingly that, since the late 1930s, major pedagogical shifts, ideological positions, discourses and orthodoxies about psychiatric practice and theory in Iran occurred parallel to, and as a result of, geo-political, economic and cultural changes and interests.

For example, in chapter two Behrouzan considers the years leading up to and following the 1979 Revolution, the religious codes of conduct and a Shi’ite moral order in society since the late 1970s, the Iran-Iraq War (1980–1988), and economic sanctions imposed by Western governments. While Behrouzan shows how these events were profoundly influential in steering the direction of modern Iranian psychiatry, she is careful not to make simplistic causal claims. There is no over-determined superstructure, no inescapable imperial influence, hegemonic sovereign power or all-powerful state apparatus—there are no non-agentive bio-political colonized subjects, no voiceless protagonists resisting one thing or another. It is extraordinary how Behrouzan connects dots in a messy field of shared interests, convergences, and divergences. One key point in Prozak Diaries that is repeatedly emphasized is that while modern Iranian psychiatry as a scientific discipline began to calcify in the 1930s in conjunction with Freud’s influence worldwide—the subject of psychiatry, or viewing mental and emotional health as a key aspect of biomedical health, was always already configured prominently in Persian traditions as well as in the Islamic medical and philosophical sciences. Indeed, some of the earliest work about psychiatry was written in Persian dating back to the ninth century which draw upon the Greek medical texts written seven centuries before. Prozak Diaries engages incisively in a field where what seems like paradoxical positions meet—in a messy reality which cuts through stereotypical binaries. The ways in which Freud or critiques of Freud, religious doctrine or secular critiques of religious doctrine, western influences or critiques of western influences, are leveraged or welded in personal and political justifications for one thing or another makes Prozak Diaries special.

In the spirit of Ian Hacking, Behrouzan demonstrates how understandings and recognition of mental health disorders such as PTSD, ADHD, and depression have evolved, “looped,” and shifted overtime—marking or depending on dominant generational and moral orthodoxies. The two concluding chapters circle back to debates, tensions, and contradictions outlined particularly in chapter two: tensions and distinctions that seem naturally oppositional are showed by Behrouzan to be anything but. West vs. east, religious vs. secular, scientific vs. mystical, worldly vs. ascetic, all of these essentialisms are blurred amongst two primary approaches to psychiatry in Iran. On the one hand, there is the psychodynamic approach which emphasizes psychotherapy and considers familial, social, and environmental considerations in diagnosis and treatment. On the other hand, there is the biomedical approach which emphasizes neurochemical considerations and is thus more supportive of psychopharmacological treatments (pp. 210-215). Behrouzan’s analysis does not take Iranian culture as the primary subject of inquiry per se. Instead Prozak Diaries turns the mirror upon the discipline and practice of psychiatry itself, and situates it particularly within Iran; thus Behrouzan offers a portable story that may be culturally specific but nonetheless analyzes the culturally specific context as it is informed and constructed by the assumed universality of psychiatry’s reach. In this sense, Behrouzan does not explicitly call for an “alternative,” “non-western,” or “anti-colonial” genealogy (see Navaro 2017). Rather, Behrouzan simply provides the genealogy itself without a pretense or normative call to write against or diversify. Behrouzan blends deep historical insights that are indigenous to the region with “imports” and insights that were as relevant in 9th and 10th centuries are they are today. She blends English and Persian. She blends biomedical and poetic language, cultural and political references, illustrating how physiology manifests itself in “interpersonal relationships among couples, individuals, and society at large.” By any standard, Prozak Diaries is meticulously crafted and exceptionally well-executed. Behrouzan’s medical training, deep historical perspective, cultural analysis, and careful ethnographic writing illuminate a way of thinking about the Middle East that is often lacking.

It is hard to think of anything too critical about this book, except perhaps that it is geared towards a narrow audience with specific interests and it might be inaccessible to those who are otherwise uninterested in psychiatry and Middle Eastern Studies. The only slight miscalculation that comes to mind is that Behrouzan makes specific choices as a writer, she provides examples and multiple perspectives for a reason, and the reasons underlying her choices may not be clear to the nonspecialist reader because she does not explain her choices, except perhaps, till the very end of the book in the endnotes. While some discussion is provided in the endnotes along with almost all serious engagements with critical social theory and intellectual genealogies; I would have liked to read more about, for example, why Behrouzan organized the chapters the way she did, why she steers away from using an omniscient authorial voice, or why each chapter seems to be organized around different subject positions. Indeed, readers are not able to fully appreciate the depth and scope of Behrouzan’s expertise unless they dig through the endnotes which, for many readers, are an optional augmentation to the text itself. The endnotes however, are where the most compelling and sophisticated discussions in the book take place. I can only speculate that the reason why Behrouzan reserved serious engagement with theory for the endnotes is because she wanted the text as a whole to be accessible for non-specialists. Given the rigor of the text, Prozak Diaries is not particularly accessible to the nonspecialist reader anyway. This is why it was bit of an oversight for Behrouzan to underplay her command of social theory and psychoanalytic literature within the text itself. The full extent to Behrouzan’s contribution may go unnoticed to readers; with exception those of us who enjoy the footnote/endnote trenches. So if you do read the book, which I highly recommend that you do, delve into the endnotes, you won’t regret it!

This small criticism is not intended to suggest that non-specialists should not bother to read Prozak Diaries. On the contrary, it should be considered an invaluable ethnography for all medical students, medical and psychological anthropologists, those interested psychoanalytic theory, and those studying the Middle East, Central Asia, or the Muslim World in general. It would interest mental health care practitioners who work in and study the MENA region as well as those interested in emerging literature considering deep historical accounts of societies in and around the Caspian, Black, and Mediterranean Seas. Indeed, Prozak Diaries illustrates how, despite dominant narratives that claim a natural incommensurability between Western and Eastern world-views—cross-cultural and ideational enmeshment and exchange is a matter of historical fact and continues to be up to the present day.

 

Works Cited

Nader, L. 1972. ‘Up the Anthropologist: Perspectives Gained from ‘studying up’’pp. 284–311 in D. Hymes (ed) Reinventing Anthropology. New York: Random House

Navaro, Y. 2017. “Diversifying Affect.” Cultural Anthropology 32(2).

 

Dina Omar is a doctoral candidate at Yale University in the department of Anthropology. She has joint appointments in Women’s Gender and Sexuality Studies, and Middle Eastern Studies. Her research focuses on histories and trajectories of mental health institutions and therapies in and around Israel and Palestine as well as the politics of mental health in areas or extreme surveillance.

Reproducing the Speculative: Reproductive Technology, Education, and Science Fiction by Kaitlyn Sherman

17 Août 2017 - 10:36pm

Walter, a Synthetic, quietly makes his rounds in the brightly lit, pristine interior of the Covenant, a Weyland Corporation Spaceship. Fingers pressed to the translucent, impermeable glass, he checks the status of each crew member as they rest in their cryochambers, suspended in chemically-induced comas until they reach their destined planet in seven years and four months’ time. The ship’s artificial intelligence system, Mother, chimes, “Seven bells and all is well.” Reassured of their security, Walter moves on to the next zone, where another 2,000 cryochambers contain sleeping colonists from Earth. This zone also features a panel of drawers, each housing dozens of embryos—over 1,100 second-generation colonists. They are packed individually into river-stone sized ovoids; clear, solid, egg-like. Amid the rows, an embryo has died, and its artificial uterine-sack is clouded and dark. Observing it briefly, Walter takes it from its socket with a set of tongs and places it into a biohazard bin. The Covenant is on a mission to colonize a habitable, distant planet. Their ship contains everything that could be useful in setting up a new colony: terraforming vehicles, construction materials, and human life itself. Even though these frozen embryos aren’t yet actively developing, they reflect a technology that allows for such a feat, while ensuring a population boom that is not dependent upon the limited space of mature female colonists’ wombs.

This scene is part of the opening sequence of the latest film in Ridley Scott’s Alien franchise. Alien: Covenant (2017) is the most recent science fiction film to illustrate advances in reproductive technologies, especially that of ectogenesis, or external gestation and birth. It is certainly not the first, however, and reproductive technology has long been a central theme throughout popular science fictional media forms.

Science and speculative fiction reach millions, and anthropologists who are interested in engaging with public conversations around science and medicine—and around expanding reproductive technologies in particular—must recognize the role these genres play in popular understandings of the social implications of new technologies. Science fiction offers important opportunities to engage students in particular in these conversations. Carefully chosen works of science fiction can be valuable tools within the classroom to broaden understandings of scientific advancement and technological development, and to highlight the serious social effects of these technologies, especially toward minorities and bodies that historically don’t matter (to invoke Butler, 1997).

In the remainder of this post, I offer some background on the public reach of science fiction and discuss the contributions this genre has made to the fields of reproductive ethics and feminist studies, with a particular focus on works that could be useful when teaching about these issues in undergraduate classes.

 

Science and Fiction; Reach and Influence

Science fiction is one of the most prevalent and capital-generating subgenres in popular culture media today. Among the top-grossing films of each year between 1995 and 2017, 56%—that is 13 out of 23 films—contained science fictional themes or elements (Nash Information Services 2017). In 2016, the top ten grossing movies fell exclusively into subgenres containing elements of science fiction and fantasy, bringing in an astounding $9.25 billion combined worldwide (Guerrasio 2016; Box Office Mojo 2017). To say that these themes reach a massive audience is an understatement. The broadest collection of science fiction media still takes a textual form, however. Publisher’s Weekly reported a 44% increase in print science fiction book sales between 2014 and 2015 (Milliot and Segura 2016).

The popularity of science fiction is often linked to current events. For example, The Guardian reports that sales of Margaret Atwood’s 1985 book The Handmaid’s Tale have soared after Trump’s election and as fears of authoritarian control over women’s reproductive rights has surged (2017). This is intensified by the premier of the Hulu television series of the same name. Looking toward the future makes sense when social, political, and economic tensions are high and raging fears of climate change, nuclear war, and the fate of the human species are hot topics in news segments and on social media.

But concern about these issues does not imply an understanding of them, and scientists often point to broad public unfamiliarity with science-related issues. For example, a majority of members of the American Association for the Advancement of Science believe that, while Americans value scientific research in general, significant gaps in public knowledge about science originate partly from a lack of interest in engaging with science news (Funk et al., 10-11). Indeed, a 2015 study indicated that a majority of Americans learn about current events, including science-related topics, through social media (Greenwood et al., 2). This limited understanding of scientific concepts does not prevent Americans from having strong opinions regarding science-related issues (Funk et al., 6). Science fiction is a “literature of change” and, in this context, is uniquely positioned to assist people in understanding the complexities of the world around them (Brooks Landon, as quoted by Latham, 12).

Many scientists raise concerns that science fiction can negatively affect scientific literacy. For example, education researchers have argued that “a single viewing of a science fiction film can negatively impact student ideas regarding scientific phenomena. Specifically…that the film [The Core] leveraged the scientific authority of the main character, coupled with scientifically correct explanations of some basic earth science, to create a series of plausible, albeit unscientific, ideas that made sense to students” (Barnett, et al., 179, emphasis in original). But rather than lamenting that the public will learn flawed science from science fiction, Barnett et al. argue that educators should engage with these works to explain inconsistencies and encourage critical thinking (179). Anthropologists and STS scholars, as well, can use science fiction to encourage students to think more deeply about the social implications of science and technology and to envision alternative futures. As Rob Latham argues, science fiction is, in part, “a mode of analysis, a way of thinking about alterity and difference that has become a useful critical tool for feminist, antiracist, and other political work” (10).

 

Science Fiction in Reproductive Ethics and Feminist Studies

Rapidly changing reproductive technologies—from assisted conception to surrogacy, cloning, birth control, and more—have been a central area of concern in both science fiction and STS (see, for example: Strathern 1992; Franklin 1997, 2006, 2007; Rapp 1999; and Teman 2010). Recently, a new reproductive possibility has developed, as ectogenesis becomes increasingly feasible. Earlier this year, news headlines and social media feeds buzzed with excitement—and dismay—when researchers at the Children’s Hospital of Philadelphia Research Institute announced they had successfully shown that “fetal lambs that are developmentally equivalent to the extreme premature human infant can be physiologically supported in [an] extra-uterine device for up to 4 weeks” (2017, 1).

Ectogenesis has long been a topic of discussion in bioethics. The book Ectogenesis: Artificial Womb Technology and the Future of Human Reproduction (Shook and Gelfand, 2006) discusses critical moral philosophical, legal, social, and political considerations surrounding the controversial technology. Significant concerns intersect with already heated abortion debates: would this technology be acceptable to pro-life advocates if it allowed the embryo or fetus a chance at life, even if outside the mother’s womb? Ectogenesis may mean that “a woman’s contribution to the birth of a live baby will be similar to that of a man, namely, both will only need to provide or donate gametes” (Shook and Gelfand 2006, 2). What might this mean for feminist movements—is ecotogenesis a limiting technology, eliminating what has been seen as women’s primary social worth, or is it liberating for women? Shulamith Firestone controversially insists that women will never be equal in society without the use of artificial womb technology (1970). Singer and Wells (2006) state that ectogenesis should only be available to those who want it, not imposed upon all of woman-kind as a vehicle of forced “equality” to men (19).

Alternative reproductive technologies are also a common theme within the broad genre of science fiction. The frequent repetition of certain motifs both reflects and produces a standard way of imagining the future, namely that humankind will inevitably depend upon a range of available alternative reproductive technologies—with ectogenesis a major player. Commonly, these technologies affect the perceived place of women in society. These fictional works can be especially useful for exploring minority struggles, sexual abuse, discussions of inequality, and reproductive politics. For example, the 2015 dystopian novel The Only Ones, by Carola Dibbell, though broad in its exploration of the future, asks how reproductive technologies may change as ethics are discarded in the wake of rapidly spreading disease. Parents who lost their children to devastating pandemics, mad with grief, save the skin of their dead young, hoping to clone them through parthenogenesis (conception without fertilization) and ectogenesis. Dibbell navigates the complications of identity legitimization with illegal parthenogenetic babies and the trials of motherhood given severe lack of resources and group-knowledge in child-rearing. Beyond that, The Only Ones displays the precarity of the future for females: they are valuable for the potential sale of their organs, gametes, and bodily-fluids on black markets, and can gain access to resources upon agreeing to undergo medical experimentation and exploitation, often leaving them internally marred and unable to continue gaining revenue through the sale of their gamete cells. In bringing lived experience back into the technicalities of reproductive technologies, The Only Ones challenges ethical positions, recalling Marilyn Strathern’s Reproducing the future (1992), especially as she considers legislative definitions of parenthood in the wake of biological versus social ownership to the rights of a child born through artificial means. Additional fictional works which consider the changing roles of women in society, especially through alterations of reproductive means, include Charlotte Perkins Gilman’s Herland (1915), Lois McMaster Bujold’s Vorkosigan series (1986-2016), particularly Barrayar (1991), and Sheri S. Tepper’s The Gate to Women’s Country (1993).

While the above-mentioned works have been significant in disseminating feminist concepts, it is important to decenter the white, Eurocentric, colonialist perspectives that continue to dominate the science fiction genre. Octavia Butler’s work has been foundational in giving black individuals a place not only in literature, but in the future. “Unlike traditional science fiction’s formulation of alienation, which often maintains distinctions of difference, Octavia Butler’s work seeks to blur multiple boundaries: between Self and Other, between colonized and colonizer, between human and alien” (Pasco et al. 2016, 249). Her short story “Bloodchild” (1984) is an important staple in discussions of gender roles, especially in reproduction. She places reproductive responsibility upon the shoulders of men through the introduction of an alien species that, through a risky impregnation, seeds the torso of human males with their eggs. Though this work does not address ectogenesis specifically, it nevertheless is foundational in science fiction engagements with standard reproductive practices.

Butler is also an important figure in the development of Afrofuturism, an artistic movement which seeks to build a place for black people where previously there hasn’t been one (Nelson 2002). Her focus on the experience of women of color marks many of her works as important pieces for thinking through social, racial, and sexist injustices that are essential parts of the disciplines of anthropology, gender studies, critical race studies, and STS, as well as others. Her work allows us to understand the human condition in a light that may deviate from the standard classic works of science fiction. Yaszek writes, “[b]y continuing to recover the history of women’s science fiction in all of its diversity, and by continuing to talk about it amongst ourselves and with our colleagues from other fields of inquiry, we can make important strides toward the larger feminist effort to remember those women that history doesn’t see” (Yaszek 2005, 288). Butler’s Lilith’s Brood trilogy—Dawn (1987), Adulthood Rites (1988), and Imago (1989)—and Nalo Hopkinson’s Midnight Robber (2000) are additional Afrofuturist works that explore changing reproductive technologies and roles in the lives of women of color.

As illustrated above, race is deeply intertwined with imagined possibilities of advancements in reproductive technologies. The 2017 blockbuster Guardians of the Galaxy Vol. 2 featured antagonists who genetically engineered themselves to be perfect specimens, each having been born out of “birthing pods.” Significantly, their golden skin marked them immediately as alien, though the rest of their physiology remained human. As adversaries, they were no match for the protagonists, assumedly “naturally-born” characters, and became comic parodies. This implicated concern over clashes between those born through the use of reproductive technologies versus their biological, naturally born counterparts is also evident in the 1997 science fictional drama Gattaca. Gattaca centers on a Brave New World-inspired future society in which social, economic, and political success is solely available to individuals who have been genetically engineered at conception. The integral take-away: a nearly all-white cast implicitly reveals whom these valued members of society weren’t.

The film’s emphasis on potential eugenic applications of selective-fetal development is founded on much older work as well, particularly a lecture by biologist J.D.S. Haldane entitled “Daedalus, or, Science and the Future” (1923). Haldane speculates about the future of scientists and the very nature of science itself through a fictional narrative. He traces the fictional genealogy of the implementation and advancement of ectogenesis in his (proposed) world, stating that the first ectogenetic child would be produced in 1951, after a series of trials on various animal species. Shortly thereafter, France would begin producing 60,000 children annually through the method. “[T]he news of [the] first success caused an unprecedented sensation throughout the entire world, for the birthrate was already less than the death rate in most civilised countries” (1923, paragraph 53). Haldane then adds the eugenic element to his speculation,

The small proportion of men and women who are selected as ancestors for the next generation are so undoubtedly superior to the average that the advance in each generation in any single respect, from the increased output of first-class music to the decreased convictions for theft, is very startling. Had it not been for ectogenesis there can be little doubt that civilisation would have collapsed within a measurable time owing to the greater fertility of the less desirable members of the population in almost all countries. (emphasis added, paragraph 54)

 

Conclusion: From Theater to Classroom

These examples barely scratch the surface of the multitude of ways science fiction has explored the ethics of advancing reproductive technologies. Many of the above examples raise significant topics for ethical conversations and can be paired with critical theoretical works already being discussed in anthropology classrooms. Increasingly, scholarly work in anthropology and STS is making use of science fiction. Feminist scholars such as Donna Haraway and Banu Subramaniam have used speculative fiction as a method of building theory. Beyond Haraway’s use of the metaphor of cyborg bodies (1991; 1991), her recent book Staying with the Trouble (2016) not only engages with Octavia Butler, but also makes use of Haraway’s own fiction to imagine a world in which people make kin, not babies. Subramaniam employs well-known science fictional themes in many chapters of Ghost Stories for Darwin, including “Resistance is Futile! You Will be Assimilated: Gender and the Making of Scientists” (2014, 180). She also includes her own fiction, “Singing the Morning Blues: A Fictional Science” (70) to explore interdisciplinarity, as well as encounters between the researcher and the local. She writes, “I believe we need not only science fiction, but fictional sciences—imagining other configurations of knowledge making, reconstructing alternate inter- and a-disciplinary lenses, new conceptual practices, and more engaging plots and stories that are located in the interdisciplinary fissures of the sciences and the humanities” (72). Like Haraway and Subramaniam, we should embrace the ways science fiction is already entangled in critical theoretical and practical concepts.

Still, science fiction as a genre should be taken more seriously as a legitimate mode of understanding. Science fiction allows researchers the opportunity to see how people are interacting with and understanding complicated medical, scientific, and technological changes within their societies. Millions of people encounter these speculative works each year, and portrayals of the future do not flit through their minds unabsorbed. These encounters can lead to problematic understandings of what is known to be and what is possible in the future given these knowns. They can also allow for deeper understandings of complex social ramifications in the development and use of new technologies. We see how rigid theory may miss the lived experiences of those who are historically unimportant, non-valuable, marginal. The inclusion of science fiction in social science courses can both increase student understandings about the implications and complexities of the topics covered within the curriculum, and offer instructors a view of how these topics are being conveyed to broad audiences who do not typically engage with scientific, medical, or technological discussions beyond popular media. As Haraway says, “Science fact and speculative fabulation need each other, and both need speculative feminism” (2016, 3). Today’s students are part of a body of future creators, artists, and great thinkers, disseminating knowledge out into the world. By using science fiction as a functional part of education, we open doors for better communication between academia and the wider population.

 

Bibliography

Atwood, Margaret. 1986. The Handmaid’s Tale. New York: Anchor Books.

Barnett, M., Wagner, H., Gatling, A. et al. 2006. “The impact of Science Fiction Film on Student Understanding of Science.” Journal of Science Education and Technology. 15(2): 179-191. doi:10.1007/s10956-006-9001-y

Box Office Mojo. 2017. “Rogue One: A Star Wars Story.” Accessed May 17.  http://www.boxofficemojo.com/movies/?id=starwars2016.htm

Bujold, Lois McMaster. [1991] 2012. Barrayar. Farmington, MA: NESFA Press.

Butler, Judith. 1997. “Introduction” to Bodies that Matter. In The Gender/Sexuality Reader:Culture, History, Political Economy, edited by Roger Lancaster and Michaela di Leonardo, 531–42. New York: Routledge.

Butler, Octavia. [1997] 1988. Adulthood Rites. New York: Warner Books.

Butler, Octavia. [1984] 2009. “Bloodchild.” In Science Fiction Stories and Contexts, edited by Heather Masri, 119-134. New York: Bedford/St. Martin’s.

Butler, Octavia. [1997] 1987. Dawn. New York: Warner Books.

Butler, Octavia. [1997] 1989. Imago. New York: Warner Books.

Dibbell, Carola. 2015.The Only Ones. Canada: Two Dollar Radio.

Firestone, Shulamith. [1970] 1972. The Dialectic of Sex: The Case for Feminist Revolution. New York: Bantam Books.

Franklin, Sarah, and Roberts, Celia. 2006. Born and Made: An Ethnography of Preimplantation Genetic Diagnosis. Princeton: Princeton University Press.

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Franklin, Sarah. 1997. Embodied Progress: A Cultural Account of Assisted Conception. New York: Routledge.

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Guerrasio, Jason. 2016. “The 10 Highest-Grossing Movies of 2016, Ranked.” Accessed May 17. http://www.businessinsider.com/highest-grossing-movies-of-2016-ranked-2016-12/#2-finding-dory-1027-billion-9

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Kaitlyn Sherman is a graduate student in the Medicine, Science, and Technology Studies Program, Department of Anthropology, at the University of California Irvine. She studies the intersection between science fiction and knowledge production.

The Speculative Health series is edited by Matthew Wolf-Meyer.

In the Journals – July 2017 by Danya Glabau

4 Août 2017 - 9:07pm

American Quarterly

Queer History, Mad History, and the Politics of Health

Regina Kunzel

Among the central themes of the eclectic field of mad studies is a critique of psychiatric authority. Activists and academics, from a range of positions and perspectives, have questioned psychiatry’s normalizing impulses and have privileged mad-identified knowledges over expert ones. One of the most successful assaults on psychiatric authority was launched by gay activists in the 1960s and early 1970s, resulting in the removal of homosexuality from the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. But if that event marked an inspirational victory against psychiatric power, it was also, as Robert McRuer notes, “a distancing from disability.”1Revisiting this history through analytic lenses offered by disability and mad studies defamiliarizes familiar historical narratives and unsettles the critique of psychiatric authority, especially when countered by claims to health.

 

Configurations

Immunity, Modernity, and the Biopolitics of Vaccination Resistance

Bernice L. Hausman

Conflicts over the value, meaning, and efficacy of vaccination as a preventive practice suggest that vaccination resistance stages disagreement within modern biological citizenship. This paper explores how immunity circulates in both vaccination controversy and biopolitical philosophies. Two positions—one characterized by somatic individualism, flexible bodies, reflexive approaches to knowledge, and the idea of the immune system as “the essential relation the body has with its vulnerability,” and another characterized by the immunitary paradigm, biosecurity, trust in expert systems, and vaccination—emerge. Understanding that oppositional relation can reframe public understanding of vaccine skepticism and public health responses to it.

Cultural and Biological Immunization: A Biopolitical Analysis of Immigration Apparatuses

Greg Bird and Jon Short

In the following paper, we draw from Roberto Esposito’s and Donna Haraway’s theories of immunity to examine immigration apparatuses. The immunization perspective provides new ways of examining how immigration apparatuses function. In particular, we explore how they serve the purpose of biologically and culturally immunizing a nation from being contaminated by “dangerous” populations. We begin by briefly outlining Esposito’s and Haraway’s theories of immunity. Then for the remainder of the paper we provide a genealogical sketch of the demographics of immunization in Canadian immigration policies. In the Canadian case, there are two stages of immunization that roughly correspond to Esposito’s historical account of the development of immunization apparatuses. First, we explore what we call the “crude immunization stage” (1867–1967), where various discriminatory criteria and measures were erected to safeguard the nation from being contaminated by populations designated as “dangerous.” The second “sophisticated immunization stage” began when Canada adopted a more liberal notion of multiculturalism (1967–present). Despite making substantial changes to immigration policies in the late 1960s, which were supposed to drop all discriminatory criteria on the basis of race, ethnicity, or national origin, we demonstrate how the same categories were reasserted by streaming potential (im)migrants into two pools: valuable, high-skilled immigrant workers and disposable, low-skilled migrant laborers. In this second stage, Canada has increasingly relied upon “guest” workers over permanent immigrants to supply its labor market. This distinction between permanent immigrants and temporary migrants has become a new mechanism for discriminating on the basis of race, ethnicity, and national origin.

 

Critical Public Health

Mother protection, child survival: narrative perspectives on child mental health services underutilization

Melody J. Slashinski

In the United States, increased national attention has generated a wealth of public health and epidemiologic research examining disparities in African American children’s mental health services utilization. Research has not yet been extended to examining the social structural mechanisms that keep these disparities stable and in place. Drawing from a larger urban ethnographic field study exploring the ‘everyday’ of health and illness within and across African American families living in an inner city public housing community, in this article I document the narratives of four African American mothers to illustrate how social structural mechanisms shape their decisions to seek or not mental health services for their children. I frame mothers’ decisions in terms of everyday violence, drawing attention to the institutionalized injustices that are normalized and rendered invisible because of their routine pervasiveness. I conclude with a discussion of integrating structural interventions to modify or reduce disparities in African American children’s mental health services utilization.

 

Current Anthropology

Temporality and Positive Living in the Age of HIV/AIDS: A Multisited Ethnography

Adia Benton, Thurka Sangaramoorthy, and Ippolytos Kalofonos

Drawing on comparative ethnographic fieldwork conducted in urban Mozambique, the United States, and Sierra Leone, the article is broadly concerned with the globalization of temporal logics and how specific ideologies of time and temporality accompany health interventions, such as those for human immunodeficiency virus (HIV) infection and AIDS (HIV/AIDS). More specifically, we explore how HIV-positive individuals have been increasingly encouraged to pursue healthier and more fulfilling lives through a set of moral, physical, and social practices called “positive living” since the advent of antiretroviral therapies. We describe how positive living, a feature of HIV/AIDS programs throughout the world, has taken root across varied political, social, and economic contexts and how temporal rationalities, which have largely been underexamined in the HIV/AIDS literature, shape communities’ responses and interpretations of positive living. Our approach is ethnographic and comparative, with implications for how anthropologists might think about collaboration and its analytical possibilities.

 

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

The body mechanical: Building a caring community, crafting a functioning body

 Yiling Hung 

When Hansen’s disease became treatable in Taiwan in the mid-20th century, a group of Hansen’s disease patients lost their sick role despite still having lingering symptoms that continued to evolve. While sociologists have explored in-depth situations in which the social role of the sick is ambiguous, few studies have investigated body experiences under liminality that requires sick people to find a new sick role. Living with lingering symptoms in a post–Hansen’s disease world, the Hansen’s disease patients I have studied face the conundrum of having to find an alternative sick role. Ethnographic fieldwork demonstrates how patients develop a specific set of body techniques that shape and are shaped by their membership in a patient community. Exploring the reinforcing projects of re-embodiment and sociality around Hansen’s disease, I argue that patients are able both to legitimate each other’s feelings of sickness and to use those feelings to manage their illness and, as such, to collectively acquire an alternative sick role. Adding to existing discussions of active patients, this article identifies the body mechanical as a way of practicing active patienthood organized around fixing, trials, mending and functionality.

Putting Gino’s lesson to work: Actor–network theory, enacted humanity, and rehabilitation

Thomas Abrams and Barbara E Gibson

This article argues that rehabilitation enacts a particular understanding of “the human” throughout therapeutic assessment and treatment. Following Michel Callon and Vololona Rabeharisoa’s “Gino’s Lesson on Humanity,” we suggest that this is not simply a top-down process, but is cultivated in the application and response to biomedical frameworks of human ability, competence, and responsibility. The emergence of the human is at once a materially contingent, moral, and interpersonal process. We begin the article by outlining the basics of the actor–network theory that underpins “Gino’s Lesson on Humanity.” Next, we elucidate its central thesis regarding how disabled personhood emerges through actor–network interactions. Section “Learning Gino’s lesson” draws on two autobiographical examples, examining the emergence of humanity through rehabilitation, particularly assessment measures and the responses to them. We conclude by thinking about how rehabilitation and actor–network theory might take this lesson on humanity seriously.

 

Health and Place

Running, health and the disciplining of women’s bodies: The influence of technology and nature

Jo Little

This paper explores the relationship between health, the body and exercise through an examination of women’s running practices. Drawing on a series of original interviews with women it shows how running reflects anxieties about health and the unruly body and how running practices are firmly linked to ideas about body size and shape and to the ‘ghosts’ of potential, future illness. The paper then explores the ways in which running practices are shaped by attitudes to technology and by the relationship between nature, environment and the body.

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

Roberta L. Woodgate, Melanie Zurba, Marie Edwards, Jacquie D. Ripat, and Gina Rempel

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the ‘embodied space of care’. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.

 

Health, Risk, and Society

On doing ‘risk work’ in the context of successful outcomes: exploring how medication safety is brought into action through health professionals’ everyday working practices

 Albert Farre, Karen Shaw, Gemma Heath, and Carole Cummins

Interest in risk has grown exponentially in healthcare, resulting in a plethora of policies and guidelines to manage risk at all levels across the healthcare system. However, the impact of risk on the nature and experiences of healthcare work remains a relatively neglected area of research on risk in healthcare. Building on the concept of ‘risk work’, in this article we examine how medication safety is brought into action through health professionals’ everyday working practices at the point of medication administration. Drawing on two closely related data sets, both generated in a large paediatric hospital providing secondary and tertiary care in England, we argue that medication-related risks are constructed and negotiated through situated social interactions. Frontline practitioners actively reconcile the logics of risk work and good-quality bedside patient care enabling them to get risk work done to successfully meet the formally established standards of quality and safety performance. ‘Risk work’ has the potential to make visible and explicit a range of risk-related practices that may not be acknowledged as such if they do not align with the established meanings of risk and the normative frameworks built around them. A focus on ‘risk work’ can bring in a new lens to the study of risk in healthcare with the potential to generate learning from how risk work gets done in the context of routine clinical practice and successful outcomes, rather than incidents and failures, in healthcare service provision.

Cycling injuries and the re-modernisation of mundane risks: from injury prevention to a population health and environmental problem

 Rony Blank-Gomel

Commentators drawing on the concept of the Risk Society have argued that the proliferation of large-scale risks generates critical reflection on the modernistic logic and drives current societal changes. Critics have argued that this thesis neglects the centrality of mundane risks in shaping contemporary identities. However, such critics have not considered the dynamics of mundane risks and the possibility that these dynamics follow the predictions made by Risk Society theorists. In this article, I examine this issue using the recent history of cycling risk, focussing on expert knowledge in the Global North between 1970 and 2014. I draw on Actor–Network Theory to operationalise Risk Society, conceptualising accounts of cycling risk as the products of a dynamic network. I examine this network using scientometric analyses of scientific papers, analyses of influential texts and in-depth interviews with experts and activists. I argue that the dynamics of this network follow the predictions of Risk Society: bicycle helmets emerged as a technological fix for a specific risk, but are now described as the source of new risks to health and safety, due to their potential interactions with human psychologies and social behaviours. This encourages reflexivity on the conditions producing such risks, namely, the modernistic logic. Thus, mundane risks are both re-modernised and remain central to shaping identities and concerns. More specifically, the interaction between mundane risks and holistic conceptualisations of health is shown to contribute to the shift from first to second modernity.

 

Journal of the History of Medicine and Allied Sciences

“His Native, Hot Country”: Racial Science and Environment in Antebellum American Medical Thought

Christopher D. Willoughby

Relying on a close reading of more than 4,000 medicals student theses, this essay explores the evolving medical approaches to race and environment in the early national and antebellum United States and highlights the role that medical school pedagogy played in disseminating and elaborating racial theory. Specifically, it considers the influence of racial science on medical concepts of the relationship of bodies to climates. At their core, monogenesis—belief in a single, unified human race—and polygenesis—the belief that each race was created separately—were theories about the human body’s connections to the natural world. As polygenesis became influential in Atlantic medical thought, physicians saw environmental treatments as a matter of matching bodies to their natural ecology. In the first decades of the nineteenth century, Atlantic physicians understood bodies and places as in constant states of flux. Through proper treatment, people and environments could suffer either degradation or improvement. Practitioners saw African Americans and whites as the same species with their differences being largely superficial and produced by climate. However, by the 1830s and 1840s medical students were learning that each race was inherently different and unalterable by time or temperature. In this paradigm, medical students articulated a vision of racial health rooted in organic relationships between bodies and climates.

Eating in the Panopticon: Surveillance of Food and Weight before and after Bariatric Surgery

 Sarah Trainer, Amber Wutich, and Alexandra Brewis

In this article, we explore the processes by which surveillance of eating and weight is coupled with popular and medical ideas about discipline, responsibility, and moral worth for individuals identified as fat/obese. We then follow these individuals through bariatric surgery and weight loss, paying attention to what discourses and practices shift and what remain unchanged. We argue that weight loss does not temper the intensity and constancy of surveillance, because it is at the core of ideas concerning good citizenship and personal responsibility. Accompanying judgments do shift, however, as the perceptions of failure at disciplined “healthy” eating associated with fatness give way to more diverse attitudes post surgery. This analysis also highlights the fact that public and clinical perceptions of “troubled eating” often rely not on eating practices but on the types of bodies that are doing the consuming.

“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

 Sarah Bernays, Sara Paparini, Janet Seeley, and Tim Rhodes

Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people’s perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US, and Uganda, embedded within the BREATHER international clinical trial. Drawing from Goffman’s notion of stigma, we analyze relational dynamics in HIV clinics, as rare spaces where HIV is “known,” and how young people’s relationships may be threatened by non-adherence to treatment. Young people’s reflections on and strategies for maintaining their reputation as patients raise questions about particular forms of medicalization of HIV and the moralization of treatment adherence that affect them, and how these may restrict opportunities for care across the epidemic.

Repellents and New “Spaces of Concern” in Global Health (open access)

Ann H. Kelly, Hermione N. Boko Koudakossi, and Sarah J. Moore

Today, malaria prevention hinges upon two domestic interventions: insecticide-treated bed nets and indoor residual spraying. As mosquitoes grow resistant to these tools, however, novel approaches to vector control have become a priority area of malaria research and development. Spatial repellency, a volumetric mode of action that seeks to reduce disease transmission by creating an atmosphere inimical to mosquitoes, represents one way forward. Drawing from research that sought to develop new repellent chemicals in conversation with users from sub-Saharan Africa and the United States, we consider the implications of a non-insecticidal paradigm of vector control for how we understand the political ecology of malaria.

Precarity and Preparedness: Non-Adherence as Institutional Work in Diagnosing and Treating Malaria in Uganda

René Umlauf 

Access to anti-malarial drugs is increasingly governed by novel regulation technologies like rapid diagnostic tests (RDTs). However, high rates of non-adherence particularly to negative RDT results have been reported, threatening the cost-effectiveness of the two interrelated goals of improving diagnosis and reducing the over-prescription of expensive anti-malarial drugs. Below I set out to reconstruct prior treatment forms like presumptive treatment of malaria by paying particular attention to their institutional groundings. I show how novel regulation technologies affect existing institutions of care and argue that the institutional work of presumptive treatment goes beyond the diagnosis and treatment of a currently observed fever episode. Instead, in contexts of precarity, through what I will call “practices of preparedness,” presumptive treatment includes a variety of practices, performances, temporalities, and opportunities that allow individuals to prepare for future episodes of fever.

Data Performativity, Performing Health Work: Malaria and Labor in Senegal

Marlee Tichenor

In this article, I investigate the ramifications of health data production in the health fight against malaria in and around Dakar, Senegal. Malaria health development funding at the community level is contingent on performativity; the Global Fund’s “performance-based funding,” for example, requires that local actors produce certain forms of evidence and that intermediaries synthesize this evidence into citable data. Analyzing the practices of diagnosis and approximation in health clinics and in global malaria documents, I argue that data production in Senegal is conditioned by and reifies preconceived notions of malaria as a problem addressable by the enumeration of technological fixes.

The Social Lives of Global Policies against Malaria: Conceptual Considerations, Past Experiences, and Current Issues

Julian Eckl

While a casual observer might easily get the impression that global policies against malaria have unanimous support, there are strongly divergent perspectives on malaria control. Analyzing ethnographic and historical material through a political science lens, I foreground the social negotiation of malaria both as an illness experience of affected populations and as a disease problem defined by experts. Taking the interrelationship between problems, solutions, and solution providers as a point of departure, I reconstruct recurrent tensions and social mechanisms that can account for the tendency to downplay conflicts and to produce technical–biomedical solutions that seem to be irresistible. This helps to overcome the perception that current policies have no alternatives and that aiming directly for malaria eradication is the only form of sustainability in times of resistances when “saving the established technical–biomedical solutions” has become a key concern.

 

Science, Technology, & Human Values

Epistemological Dominance and Social Inequality: Experiences of Native American Science, Engineering, and Health Students

Erin A. Cech, Anneke Metz, Jessi L. Smith, and Karen deVries

Can epistemologies anchor processes of social inequality? In this paper, we consider how epistemological dominance in science, engineering, and health (SE&H) fields perpetuates disadvantages for students who enter higher education with alternative epistemologies. Drawing on in-depth interviews with Native American students enrolled at two US research universities who adhere to or revere indigenous epistemologies, we find that epistemological dominance in SE&H degree programs disadvantages students through three processes. First, it delegitimizes Native epistemologies and marginalizes and silences students who value them. Second, in the process of imparting these dominant scientific epistemologies, SE&H courses sometimes require students to participate in pedagogical practices that challenge indigenous ways of knowing. Third, students encounter epistemological imperialism: most students in the sample are working to earn SE&H degrees in order to return to tribal communities to “give back,” yet, because the US laws regulating the practice of SE&H extend onto tribal lands, students must earn credentials in epistemologies that devalue, delegitimate, and threaten indigenous knowledge ways to practice on tribal lands. We examine how students navigate these experiences, discuss the implications of these findings for SE&H education, and describe how epistemological dominance may serve as a mechanism of inequality reproduction more broadly.

Too Much of a Good Thing? American Childbirth, Intentional Ignorance, and the Boundaries of Responsible Knowledge

Kellie Owens

In biomedicine, practitioners often treat risk of disease as an illness in itself—suitable for monitoring and intervention. In some cases, increased diagnostics improve health outcomes by detecting problems early. Recently, however, science and technology studies scholars and medical practitioners have noted that the treatment of risk can also lead to unnecessary intervention and possible harm. Despite these findings, it is often hard to see changes in practice. Childbirth serves as an illuminating case because two models of health risk operate simultaneously—in addition to the model valuing frequent intervention, there is another that seeks to mitigate risk by refusing medical surveillance. Based on interviews with birth providers and an analysis of professional documents, this article uses the case of fetal heart rate monitoring in American childbirth to demonstrate how some health providers are framing “intentional non-knowing” as a moral imperative to reduce medical risk. Studying the success and limitations of this “risk counterculture” illuminates how risk societies are changing in response to data suggesting that more information can have hurtful effects. This case integrates well-developed theories of knowledge production with less-developed theories of knowledge nonproduction, leading to a more fruitful discussion of the boundaries of responsible knowledge in risk management.

 

Social Science and Medicine

Age of despair or age of hope? Palestinian women’s perspectives on midlife health

Doaa Hammoudeh, Ernestina Coast, DavidLewis, Yokevan der Meulen, Tiziana Leone, Rita Giacaman

There is limited evidence about women’s experiences of the midlife, beyond a narrow – frequently biomedical – focus on the menopause. The broader (physical, social, cultural, political) dimensions of women’s midlife health are poorly understood, particularly in low and middle-income countries. Our study seeks to understand how women in the West Bank (occupied Palestinian territories) conceptualise, experience and manage their health in the midlife. We generated qualitative evidence using in-depth life history interviews in 2015 with women (n = 35) living in the West Bank, analysed thematically. Women’s understandings of good health draw on indigenous and biomedical knowledge and include a calm psychological state, ease of movement, as well as physical appearance and complexion. Exposure to political violence was understood as impacting mental and physical well-being. Most women articulated a positive view about midlife and ageing as a natural process. A range of terms and expressions were suggested by women experiencing this transition, internalised differently according to marital and motherhood status. For many women, the menopause was merely one – often relatively unimportant – aspect of changes associated with ageing. In dealing with midlife health issues women used multiple strategies, or health pluralism, sequentially or simultaneously; drawing on multiple sets of accrued resources. For never-married or childless women, formal healthcare services represented a site of social exclusion. Our evidence highlights the importance of considering the broader dimensions related to midlife health for understanding women’s health maintaining and care-seeking behaviours as they age.

Resisting decay: On disposal, valuation, and care in a dementia nursing home in Denmark

Iben M. Gjødsbøl, Lene Koch, and Mette N. Svendsen

This paper approaches institutionalized dementia care as a site of societal disposal, valuation, and care for human life. Drawing upon six weeks of ethnographic fieldwork and ten qualitative interviews carried out in a Danish dementia nursing home in 2014, we analyze how nursing home staff, through everyday care, uphold the value of life for residents in severe mental and physical decline. We argue that life’s worth is established when residents gain qualities of personhood and agency through substitution processes carried out by staff. Yet the persistent absence of conventional personhood and autonomous agency in residents (i.e. capacities for memory, consciousness, language, and mobility) evokes experiences of ambiguity in staff and relatives of residents. We close the article with a discussion of this ambiguity and the significance of the nursing home as care institution in the welfare state. Dementia care, we propose, is not only about preserving the lives of people with dementia. At stake in the daily care practices around severely disabled residents in the nursing home is the very continuance of the main principles of the welfare society.

Uneasy encounters: Youth, social (dis)comfort and the autistic self

Edmund Coleman-Fountain

Notions of deficit and ‘faultiness’ shape depictions of the association between autism and uneasy social relationships. That framing has been the focus of critique by autistic activists and scholars who, exploring autistic people’s sociality, reframe issues of social difficulty in terms of inequality and discomfort. Located within this set of debates, the article analyses data from a UK based study of mental health narratives derived from semi-structured interviews with 19 autistic young adults aged 23 to 24. The NIHR funded the study, and a UK National Health Service Research Ethics Committee gave ethical approval. Sociality and social difficulties, feelings of discomfort, and perceptions of the autistic self as ‘faulty’ were themes of the study. Exploring the nexus of inequality, non-autistic social power, fears about social performance and (dis)comfort that underpinned the accounts, the article explores the conclusions the young adults reached about social difficulty. Critically examining notions of improvability, the article contributes to debates about sociality, social difficulty and comfort by questioning the assumption that social dysfunction is due to autistic ‘fault’. The article concludes with a discussion of inequality in autistic and non-autistic encounters, and of the social dynamics that deny autistic people social comfort.

Re-working biographies: Women’s narratives of pregnancy whilst living with epilepsy

Annalise Weckesser, Elaine Denny, the EMPIRE Collaborative Network

This paper explores the multiple ways experiences of pregnancy and early motherhood come to ‘rework’ the biographies of women living with epilepsy. Pregnancy is explored as a temporarily concurrent status alongside the long-term condition of epilepsy. Narrative interviews were conducted with 32 women from across the UK. Analysis of these narratives suggests that biographical disruption and continuity are both useful in the conceptualisation of women’s diverse experiences of pregnancy and epilepsy. Such findings challenge the notion that the presence of a condition over a long period of time leads to the normalisation of illness. Participants’ narratives demonstrate that, for some, pregnancy and early motherhood may be disruptive and can raise concerns regarding an ever present condition that may previously have been taken for granted. Findings also indicate the need for a greater consideration of gender and care responsibilities, as well explorations of concomitant conditions, in the theorising of biographies and chronic illness.

Sociology of Health & Illness

Remains of care: opioid substitution treatment in the post-welfare state

 Anna Leppo and Riikka Perälä

This article examines how the amplified role of pharmaceutical substances in addiction treatment affects the everyday realisation of care, particularly the relationship between workers and patients, in so called austere environments. Theoretically the article draws firstly on the literature that links pharmaceuticalisation to the neoliberal undoing of central public structures and institutions of care, and secondly on Anne-Marie Mol’s concept of the logic of care. Based on an ethnographic analysis of the everyday life at a Finnish opioid substitution treatment clinic we show the mechanisms through which the realisation of pharmacotherapy can, in the current political climate, result in a very narrow understanding of drug problems and minimal human contact between patients and professionals. Our analysis manifests an important shift in the logic of addiction treatment and health-care policy more broadly; namely, a growing tendency to emphasise the need for patients to care for themselves and make good choices with limited help from formal care institutions and professionals. We call this new ethos the logic of austerity.

Theory, Culture, and Society

Probiotic Environmentalities: Rewilding with Wolves and Worms

Jamie Lorimer

A probiotic turn is underway in the management of human and environmental health. Modern approaches are being challenged by deliberate interventions that introduce formerly taboo life forms into bodies, homes, cities and the wider countryside. These are guided by concepts drawn from the life sciences, including immunity and resilience. This analysis critically evaluates this turn, drawing on examples of rewilding nature reserves and reworming the human microbiome. It identifies a common ontology of socio-ecological systems marked by anthropogenic absences and tipped across thresholds into less desirable states. It examines the operation of an environmental mode of biopower associated with deliberate efforts to engineer ecologies through the introduction of keystone species. It offers a set of criteria for critically evaluating the degree to which these interventions transform or sustain prevalent forms of late modern biopolitics. The conclusion reflects on the potentials of probiotic environmentalities for hospitable government beyond the Anthropocene.

Web Round Up: Time to Chill? Egg Freezing and Beyond by Moira Kyweluk

1 Août 2017 - 10:01pm

A focus on age-related fertility decline, and exploration of ways to expand the timeline and options for biological parenthood, have been consistent cultural and web-wide fixations. The $3 billion United States fertility industry was in the headlines once again this month including coverage of the launch of Future Family, a service offering  a “fertility age test” to women and negotiated-rate infertility medical care, alongside newly published research on ovarian tissue preservation, an alternative to oocyte cryopreservation or “egg freezing”, both procedures aimed at potentially extending a woman’s fertility window.

In the wake of findings presented in July 2017 at the European Society of Human Reproduction and Embryology conference in Geneva, Switzerland by Marcia Inhorn, Professor of Anthropology and International Affairs at Yale University, popular media headlines blared:  “Why are women freezing their eggs? Because of the lack of eligible men”  and “Women who freeze their eggs aren’t doing it for career reasons.” The study analyzed interviews from 150 women in their late 30s and early 40s who opted for egg freezing in Israel and the United States. Results “show that women were not intentionally postponing childbearing for educational or career reasons, as is often assumed in media coverage of this phenomenon, but rather preserving their remaining fertility because they did not have partners to create a family with. The researchers conclude that women see egg freezing as ‘a technological concession to the man deficit’, using it to ‘buy time’ while continuing their search for a suitable partner to father their children.”

The American Society for Reproductive Medicine, the regulatory board that governs the safe and ethical use of fertility technologies, reclassified egg-freezing technology from “experimental” to standard-of-care in 2012. This reclassification caused major structural readjustments within fertility medicine to welcome patients self-identifying as in need of egg freezing services. The rise of so-called “social freezing,” the elective decision by an otherwise healthy woman to freeze her eggs (in contrast to a woman with a preexisting medical threat to fertility), has increased public attention and scrutiny of the practice.

Major Silicon Valley tech companies, led by Apple and Facebook in 2014 and followed shortly thereafter by Google and Uber, made headlines when each began offering up to $20,000 in egg-freezing health insurance benefits to female employees and covered female spouses. New statistics indicate more than a dozen tech companies have followed these industry leaders in extending benefits to employees. Supporters claim these procedures give women greater reproductive and family planning freedom, including potentially delaying childbearing. Pundits and ethicists have alternately constructed egg freezing as a “fringe perk” of working for such companies, akin to dry cleaning services and massages, or as a cultural concern, a worrying attempt to exploit female workers by encouraging delayed pregnancies within a work environment that does not support family-oriented policies that allow for parenthood.

Social egg freezers and women using all forms of reproductive technologies in the United States tend to be overwhelmingly white and middle to upper class. Queer women, women of color, women of limited financial means, and others are typically overlooked in both research and marketing of these technologies. Reniqua Allen writes, “A lot of people are talking about egg freezing: It’s the latest perk for professional women at companies like Facebook and Apple; it’s being marketed as a welcome solution for millennial women who want more control over their reproductive lives. It’s moving more mainstream. But few of the women having these conversations are black, and few of the discussions are geared toward black women”  As egg freezing and related technologies gain traction, issues of access and affordability will likely become a focus of continued media coverage.

On a lighter note:

The New Yorker, Shouts and Murmurs: Your Frozen Egg Has a Question

Further reading on social egg freezing:

The Atlantic: How One Clinic is Cutting the Cost of Egg Freezing in Half 

Susan Crockin of Georgetown University Law Center outlines some of the legal and ethical issues that arise egg freezing in the New York Times

EggBanxx Fertility, which offers egg freezing “cocktail parties” to educate woman about egg freezing services with the tagline “Smart Women Freeze”

Emma Birchall at the Huffington Post asks, what about men and egg freezing?

 

 

 

Things Which Have Once Been Conjoined: Science Fiction, Contagion, and Magic in the Age of Social Media by Samuel Gerald Collins

28 Juillet 2017 - 4:45pm

There are many interesting formations that might be called networked phenomena. Homophily and the tendency towards triad closure. Scott Feld’s Rule (I’m more likely to make friends with someone who has more friends than me). Small world phenomena (those 6 degrees of separation). “The Strength of Weak Ties” (reportedly the most cited sociology paper in history). In all, a series of social forms that complicates typical binarisms like individual versus group.

All of these have their positive and negative sides, but few networked phenomena have been met with more ambivalence than that of contagion, the idea that things (memes, viral videos, fashion) spread from person to person in a way that is similar to an epidemic; that is, people believe certain things or participate in certain behaviors without necessarily having “decided” to do so. Instead, the chances of “contracting” an idea, a fashion, or a new technology come down to the structural position in a network—a question, for example, of k-threshold models, where the chance of contagion depends upon the topology of connections vis-à-vis other infected nodes.

Given its identification with epidemiological contagion, it is not surprising that social contagion brings with it a negative valence, conjuring up fears of loss of autonomy, of being reduced to “hosts” for the “viral” propagation of information in a network. Contagion is at the heart of the fear and fascination of the zombie. It is also part of the latest panic in politics, one that centers on a vision of an electorate easily manipulated through fake news propagated through social media.

In 2012, Facebook conducted an emotional contagion experiment involving nearly 700,000 of its user accounts. By manipulating the news feeds to include more “positive” or more “negative” content, researchers demonstrated that affect was contagious—negative content on the feed would influence users to post more negative content on their own walls (Sampson 2017). Of course, Facebook researchers defended their research, but, in their own words, the experiment demonstrates the capacity of Facebook to lead “people to experience the same emotions without their awareness” (Kramer, Guillory and Hancock 2014: 8788). And just 2 years after the publication of the Facebook research, the U.S. elections were decided through just this sort of emotional contagion—along with the exploitation of other network effects.

One of the more pernicious factors enabling (and compounding) the impact of social or affective contagion is what Lerman, Yan and Wu (2016: 9) call the “majority illusion”: “Local prevalence of some attribute among a node’s neighbor networks can be very different from its global prevalence, creating an illusion that the attribute is far more common than it actually is. In a social network, this illusion may cause people to reach the wrong conclusions about how common a behavior is, leading them to accept as a norm behavior that is globally rare.”

Combined with the contagion of fake news, “majority illusion” may results in decidedly pathological behaviors, including “Pizzagate” and white terrorism, among other things. These networked, viral acts have led to new college courses and guides to detecting “fake news” in order to disrupt the cascade of misinformation.

However, the term “contagion” suggests more than networks or even epidemiology. While the etymology of the word is grounded in touching and contact (from the Latin contagion), it also emerges out of earlier understandings of maladies attributed to connection—including connection-at-a-distance. In particular, it echoes nineteenth century anthropological theories of magic in J.G Frazer, the “contagion” that could bring misfortune down upon the victims of witchcraft through the theory that what had once been together was henceforth forever linked. For example, the hair, fingernails or (more recently) the photograph could be mobilized to influence people for evil ends.

As Frazer explained in his 1890 Golden Bough, “Thus the logical basis of Contagious Magic, like that Homeopathic Magic, is a mistaken association of ideas; its physical basis, if we may speak of such a thing, like the basis of Homeopathic Magic, is a material medium of some sort which, like the ether of modern physics, is assumed to unite distant objects and convey impressions from one to the other” (37). But with his reference to “ether” (and this comes up several times in The Golden Bough), Frazer suggests that connection itself is not enough, that there needs to be a medium of contagion for, say, the malefic influence of the mistreatment of a footprint on the person who made it. Here, he joins other late 19th century scholars who sought in such a medium a material basis for the universe, a connective tissue to unite all things (Raia 2007).

In the age of social media, our “selves” are literally spread through linked networks of online documents and media that connect to everyone through short paths. It is that dual character of online interaction—the way it involves multiple “documentary selves” spread across social media platforms, on the one hand, and the way that these are embedded in connected networks, on the other—which ushers in new fears of contagion, ones that suggest a future “loss of self” and that seem to accompany other panics over the loss of individual autonomy, including the replacement of human workers with AI and robots. In her critique of social media in Alone Together, Sherry Turkle charges that social media is inauthentic and dissociative, leading both to the dissolution of identity and to the engendering of ultimately shallow and unsatisfying relationships with people with whom we’ve networked. “As we distribute ourselves, we may abandon ourselves” (Turkle 2011: 12).

Yet it’s not clear that this “distribution” is an even process. Does posting a video on Twitter mean the same thing as posting it on Facebook? Do 500 followers on Twitter mean the same thing as 500 friends on Facebook? But what if we take the medium of the connection more seriously? In terms of contagion, what if the people connected through the contagion of ideas were less important than the structures in which they were connected? Sampson’s extension of his arguments about virality and contagion to advertising on social networks takes up the importance of the social platform: “From this perspective, marketers don’t need to infiltrate the self via the mirrors and mimicry of ideology, but instead they tap into the contagious social medium in which consumer beliefs about products and brands are readily passed on as affective contagions. As follows, marketing is not the creation of self-identity, but rather the production of sensory environments in which the contagious social medium can be encouraged. The social medium becomes the producer” (Sampson 2017: 68). That is, the idea and the “host” may themselves not be primary agents of contagion; it is the connective medium which proves conducive to magic of contagion. In other words, pace Frazer, the connection between, say, an umbilical chord and the child to which it was once attached is less important than the rituals, practices, and material culture through which that connection is observed, maintained, and manipulated (Frazer 1890: 40). Or rather, we find “contagion” swapping places with varied practices that we could deem “contagious.”

What happens when more and more of our personal and social lives are organized as networks? In a sense, our behaviors are simply networked–explicable through linked nodes,not as an ‘individual, but not an amorphous, superstructural group. These have all kinds of implications for social action, cognition, identity and feeling. As Sampson (2012: 168) writes, “Decisions are not, as such, embedded in people, or in the voluntary exchanges with others, but in the very networks to which they connect. It is, like this, the network relation that leads the way.” It is these networks themselves that have become contagious, and not just any networks. Yes, online social networks themselves have become more popular, but, more than that, highly localized social networks–SNS platforms that support networks characterized by high density and centrality. These are social networks for cliques (or complete graphs) where everyone knows everyone else, and everyone talks to everyone else. To what extent are these densely networked small worlds generative of contagion?

These questions, and the way they seem to anticipate anthropology’s “ontological turn,” are at the heart of Steve Toutonghi’s 2016 novel, Join, a near future where people “join” with each other, taking on a new, collective identity that is an amalgam of all of the individuals (the “drives”) who have been incorporated. The main characters, “Chance” and “Leap,” are further subdivided into the people who make up the join: Leap One, Leap Two, Leap Three, and so on, amalgams of people that are combined (they have all of the memories and experiences of their joins) but still individual (they are aware of themselves as individual entities separate from their joins).

Joins are different from ordinary humans (“solos” or, more pejoratively, “ferals”) in at least two respects. First joins are never alone: “His parents used metaphors—it’s like being more attuned to all of who you are, all your different desires and fears; it’s like remembering who you were ten years ago, before events changed you. They said the awareness of being more than one person included a comforting sense of companionship” (Toutonghi 2016: 9). Second, joins are theoretically immortal. With each drive possessing the memories of its joined alters, memories and identity might continue indefinitely. “If Chance Five dies, then Chance–and therefore Javier Quispe–will live on through other drives in the join. That can continue forever. In a perfect join, human beings lose both their existential sense of isolation and their mortality” (10). This constant connectivity and simultaneity makes joins formidable—literally the sum of their parts–and, ultimately, concerned more with their own intertwined lives and thoughts over that of the world around them.

And it also introduces some pathologies that are unique to joined humans, what might be called networked maladies. The first is what Toutonghi calls “meme virus.” In this “reflexive spongiform encephalopathy,” behaviors build up through positive feedback into compulsive repetition: “Infected joins would develop an absolute fixation on an idea or complex of ideas.” The second, a “flip,” concerns the disruption of the join itself, one that cascades into illness and death for the rest of the joins. As a novel, “Join” follows on the trail of both of these maladies in order to explore the implications of “joining” for conceptions of self and other.

These fictional maladies are also useful windows onto network contagion. In both, the problem seems to lie in both being connected and not being connected. “A bad flip, the truly catastrophic kind, is really fascinating, one of the most interesting conditions in all of joins science. The network connection is both established and not established, leaving the join incomplete” (76). Being connected but also not connected is the primary tension in social media. With whom do I connect? How often? And whom do I disconnect? For example, in Korea (where I do some of my fieldwork), users engage multiple social media in their daily lives, and platforms like Facebook and Instagram have proven extremely popular. These accounts are visible (to some degree) by a public, even if (with Facebook) you’ve opted for more privacy. But in Korea, there has also been a concomitant growth in proprietary platforms that support social media sharing among a close circle of intimates: KaKaoTalk is one of those–with nearly 100 percent adoption in South Korea, it is the app of choice for online discussion and media sharing. BAND is another.

Both of these suggest what Ichiyo Habuchi (2005) has called “tele-cocooning,” a term that describes a small group of friends that spend a large portion of each day in intimate, digital communication. Or, as Ito et al. define it in their Living and Learning with New Media: “The practice of maintaining frequent and sometimes constant (if passive) contact with close friends and/or romantic partners” (Ito et al 2008: 16). With KaKaoTalk and BAND, the problems of stalking and government surveillance are (at least somewhat) obviated through the creation of closed networks. However, all social networks beg the question of inclusion and exclusion. As dana boyd discovered in her fieldwork with teens, even the most “public” social media implies both a finite audience and a discrete interpretation (boyd 2007). When that “public” includes those who connect to the media or interpret it in unintended ways, there can be embarrassment, anger, trauma, and even suicide—a tragedy that has disproportionately impacted young social media users.

In any case, all of these networked distinctionsbeg the question at the heart of Toutonghi’s novel. What relationship do I have with the people with whom I share? And how do these alters impact me? With the first networked malady, we have the “viral meme”: the physiological correlate of viral media “infecting” multiple, joined hosts. And with the flip, Toutonghi asks the second question. How do the actions of my network impact me? In the novel, a “flip” cascades when one of the joins entertains doubts about the conjoining: the ultimate unfollow. But we could substitute any number of negative or even pathological behaviors that harm the subject (whether intended or unintended).

The remaining question, though, returns us to Frazer’s ideas of contagion. What, exactly, is the nature of that connection that enables the work of behavioral cascades and social contagion? For Toutonghi, the explanation revolves around a “quantum” gateway linking people together. In social media, the nature of the connections eludes easy explanation. Certainly, questions about the contagious influence of white supremacy or ISIS on social media have prompted numerous scholarly inquiries, but is it the content that makes something contagious, or the structure of the networked connections that support the content?

But for this, it might be worthwhile to return to Frazer. Not because of his insights into ethnology which were fatally flawed with the colonial frames in which he worked, but for the insights we might gain into his own magical thinking—a way of thinking about connection and causality that seems very much at the heart of popular understandings of networked contagion.

A curious application of the doctrine of contagious magic is the relation commonly believed to exist between a wounded man and the agent of the wound, so that whatever is subsequently done by or to an agent must correspondingly affect the patient either for good or evil. Thus Pliny tell us that if you have wounded a man and are sorry for it, you only have to spit on the hand that gave the wound, and the pain of the sufferer will be instantly alleviated. In Melanesia, if a man’s friends get possession of the arrow which wounded him, they keep it in a damp place or in cool leaves, for then the inflammation will be trifling and will soon subside. (Frazer 1890: 40-41)

Social media itself takes the place of the arrow: it is the connection that enables the flow of contagion, the ligature that connects “things which have once been conjoined.” And like the “quantum gateway” in Toutonghi’s novel, this connective substance works by preserving the tension between things connected within a network, and between what counts as the network’s “inside” and “outside.”

 

 

References

boyd, dana (2014). It’s Complicated. New Haven, CN: Yale University Press.

Frazer, James George (2009[1890]). The Golden Bough. NY: Oxford University Press.

Habubuchi, Ichiyo (2005). “Accelerating Reflexivity.” In Personal, Portable, Pedestrian, ed. By Mizuko Ito, Daisuke Okabe, and Misa Matsuda. Cambridge, MA: MIT Press.

Ito, Mizuko, Heather Horst, Matteo Bittanti, dana boyd, Becky Herr-Stephenson, Patricia G. Lange, C.J. Pascoe and Laura Robinson (2008). Living and Learning With New Media. Chicago: The John D. and Catherine T. MacArthur Foundation.

Kramer, Adam, Jamie Guillory and Jeffrey Hancock (2014). “Experiential evidence of massive-scale emotional contagion through social networks.” PNAS 111(24): 8788-8790.

Raia, Courtney Grean (2007). “From ether theory to ether theology.” The Journal of the History of the Behavioral Sciences 43(1): 18-43.

Sampson, Tony D. (2012). Virality. Minneapolis, MN: University of Minnesota Press.

—— (2017). “Cosmic Topologies of Imitation.” Parallax 23(1): 61-75.

Toutonghi, Steve (2016). Join. NY: Soho Press.

Turkle, Sherry (2011). Alone Together. NY: Basic Books.

 

Samuel Gerald Collins is Director of Cultural Studies and a professor of anthropology in the Department of Sociology, Anthropology and Criminal Justice at Towson University. He researches information society and information and communication technologies in the United States and South Korea, and in particular the formation of multi-agent socialities composed of human and non-human agents.

‘A bit of a compromise’: Coming to terms with an emergency caesarean section by Terena Koster

24 Juillet 2017 - 7:35pm

During the midwife-hosted antenatal class Cath attended in a private hospital in Cape Town, South Africa, where she would eventually give birth, pregnant women were encouraged to name the kind of birth they wanted. They were presented with three options: “natural all the way with no medication”, “natural but open to medication”, or “elective caesarean”. The ‘choice’ women were expected to make featured as an important point of concern in their antenatal care and in their preparations for birth.

Hannah, a participant in the class, recalls a particularly striking moment when the midwife went around the room and pointed at each of the participants and asked, “Who is your gynae”. She went on to predict diverse birth outcomes, irrespective of participants’ stated intentions to birth vaginally. For Hannah this was an “eye opening” experience. A first time mother, she was now invited into a highly politicised birthing environment. Hannah had been uncertain about what kind of birth she wanted, but at 8 months pregnant she had decided on a ‘natural’ birth as opposed to a ‘caesarean’, with the caveat that in the event that an emergency caesarean section was a likely outcome, she would proactively opt for an elective caesarean.

At 39 weeks and near the end of her pregnancy, she found herself sitting opposite her obstetrician who told her there was “a real threat of the umbilical cord wrapping around [the baby’s] neck as she … drop[s] down,” adding that because the baby was “so big” there was “a high likelihood of [Hannah] tearing”. For the first time, the obstetrician instructed her to make a birthing decision: to continue trying for a vaginal birth or to opt for an elective caesarean section. Hannah asked about the likelihood of an emergency caesarean section. Her doctor explained that although it was difficult to tell, “because she is so big, because she hasn’t dropped yet, it’s likely”. Hannah felt overwhelmed. “I probably sat there for 10 min going, um ah um ah um ah”, she said, but eventually she had weighed up all the risks she had been presented with and decided to have the caesarean section. “I suppose it was a decision made in fear,” she concluded.

Like all of the other mothers in the research I conducted in 2016, Hannah had significant knowledge about the benefits of vaginal birth and had heard all the “negative things” about having a caesarean section. But now she was expected for the first time to gauge: “Is this right for my child?” and “am I giving my child a disadvantage by electing to have a caesar?”

Her doctor offered her an appointment at 6am the following day. Hannah was caught off guard. Despite the classification as an elective caesarean section, the circumstances made it feel like an emergency.

Hannah gave birth by ‘elective’ caesarean at 8am the next day. She described the birth as “lovely” and “sweet”, but also said she was sad that she had not birthed ‘naturally’.

 

I Bifurcated models of birth

As Jennifer Rogerson (2016a, 2016b) describes, birth in the South African private health sector is framed as a choice between a vaginal (‘natural’) or caesarean section (‘surgical’ or technocratic) birth. Caesarean birth is presented as a binary: either ‘elective’ or ‘emergency’. C-sections are highly likely in private healthcare facilities, with rates in excess of five times the WHO recommended rate of 10-15% (WHO, 2015; Chadwick and Foster, 2013; Gray & Vawda, 2016; Leone, Padamas and Matthews cited in Rogerson 2016b: 6). Despite their awareness of high c-section rates in the private sector in South Africa, all the women with whom I worked wanted to have their ‘natural’ birth in hospital, thus complicating the simplistic divide between natural and technocratic birth that appears in much international literature. Predicated on their understandings of the ‘universal feminine’ right to birth and what Cath described as a “womanly need”, the women anticipated that well-prepared birth plans and extensive “bodywork”, as a participant called it (see also Nash, 2011 on “body projects”), would ensure that, despite medical birth environments, their births would be ‘natural’. By this they meant much more than that the baby would be born vaginally and without intervention. ‘Natural’ birth also included dispositions and settings conducive to calmness in birth. However, as concerns about c-section rates in private hospitals demonstrates, vaginal births in such settings are statistically unlikely. And, as Hannah’s experience demonstrates, the distinctions between natural and technological and between emergency and elective caesarean are blurred as birth nears or labour progresses.

 

II Degrees of emergency

As Cath and Hannah’s experiences indicate, middle-class women desire a ‘natural’ birth but are likely to have a caesarean section that may be classified as either ‘elective’ or ‘emergency’. Despite the immediacy implied by the term, arriving at an (unscheduled) ‘emergency caesarean’ is the result of a process that participants in this study understood to be shaped by “degrees of emergency”. In what follows, we describe how women perceived this process. We are not examining medical indicators of danger, but tracing how ‘emergency’ materializes and is understood by women about to deliver. A variety of factors shaped their perceptions. Four are significant. One is the birth environment itself, another, interpretations of ‘medical time,’ a third, the provision of medical information and fourth, the relinquishing of control to experts (Davis-Floyd & Sargent, 1997; Beckett, 2005; Lazarus, 1994).

 

The birth environment

Many participants prepared birth plans to shape their experiences of birth in hospital. Such plans included soft music, dimmed lighting, being able to move about and so on. These were efforts to reduce the sterility of the hospital space. Nevertheless, women spoke about the ways that staff dispositions and the hospital environment shaped the decision to have a caesarean section. For example, Anna felt that staff became “very medical” in their attitudes to her birthing process, while Ingrid spoke about the shift from the labour ward to the cold and sterile operating theatre as producing a feeling of emergency. The calmness of medical procedure had the ironic effect of producing a sense of emergency. Other women reported that the techniques of surveillance used to ensure fetal and maternal well-being had the effect of making a caesarean seem “natural” under the circumstances. In other words, they experienced the information they accessed from medical technologies as indicators of well-being and jeopardy. Technologies, particularly those related to fetal heartbeat monitoring, cervical dilation and maternal blood pressure, produced a distinct set of relations to temporality, something that we frame as ‘medical time’, and these in turn shaped women’s responses to both medical information and the experts who offered it.

 

Medical Time

Bertha had been laboring for nine hours when her doctor told her that the fetus was in distress. Having requested an epidural, she and the fetus were constantly monitored. She could not feel her labour but was acutely aware of the fetal heartbeat, magnified by the beeping monitor next to the bed, that pulsed loud and soft in response to the contractions. The fetus heartbeat dropped significantly during contractions and Bertha interpreted this as dangerous evidence that the baby was struggling. As a result, when her caregiver expressed concern about the fetus’s well-being, and suggested a caesarean section, she agreed understanding it to be an emergency. The audibility of the technologies accompanying her birth undergirded her decision. Hannah, whose birth was classified as an elective caesarean, experienced it as an emergency because the medical information she had been given and the speed with which a surgery slot was made available made it feel like time was of the essence. As Simonds (2002) notes, biomedical management of procreative time produces the effect of working against time rather than with it, and with that, an ascending sense of emergency.

In the ways that women experienced biomedical models of time in birthing, the neat lines between ‘emergency’ and ‘elective’ caesareans became increasingly unstable. And, as women moved through the process of ‘natural’ birth becoming surgical, they decentred the locus of control from their own decision-making to that of experts, in the best interests of the child.

 

Medical information and the relinquishing of control

The provision of medical information was pivotal in the framing and shifting of birthing processes. While not all women received the same quantity of medical information, there appeared to be a positive relation between the provision of medical information and the likelihood of a late ‘elective’ caesarean. Women’s birth narratives suggest that the information they received (for example, about the size and well-being of their fetuses, the size of their pelvis, the presence of placental calcification, their own blood pressure etc.) had the effect of “grooming” them into preparedness for a c-section birth. The contrast with what women know to be “best for baby” in terms of birthing (e.g. the transfer of microbiota through the vaginal canal, the relative ease of breastfeeding after a vaginal birth, lower rates of maternal depression, and so forth) are here overruled by the immediate interests of the fetus as understood by expert medical knowledge. The framing of fetal well-being was instrumental in decisions to shift from “natural” to “caesarean birth”, despite women’s knowledge of what medical science currently says is best for babies. Thus, women’s understandings of expert knowledge shaped their acquiescence to changed birth procedure (see Jordan 1993; Davis-Floyd 1992; Kitzinger 1984; Wolf 2003). As one woman put it, “I had an elective caesarean, but it wasn’t my choice”, adding that she had done so because “you feel like you are putting your baby at risk”.

The shift to a caesarean section is the result of an articulation of value in which the women become containers for life, responsible for it, their own ideals secondary to what they experienced as the inevitable exigencies of medical knowledge and expertise. This shift is critical in coming to terms with what Koster (2016) calls ‘an in between birth’; a birth that is not quite what one planned.

 

III Coming to terms with an in-between birth

There is a large literature on the question of control in birth (Lazarus, 1994; Lupton & Schmied, 2013; Beckett, 2005; Macdonald, 2006). A feminist literature asserts the right of women to control their bodies and the birthing process in a context where birthing is highly medicalized (Davis-Floyd, 1994; Macdonald, 2006). Women in the research were ambivalent about their birthing experiences. Despite preparing for “natural births”, women ‘chose’ caesareans because they understood the fetus’s well-being as priority, even where their births were described as ‘elective’ and especially where the birth was described as an emergency. Animating values of time and a commitment to the baby’s well-being foregrounded the technical understandings of danger to life over birthing process.

How did this happen? Doctors appealed to women’s ‘maternal instincts’ in their description of shifts in medical situations. For example, Myra’s doctor told her that if she refused the caesarean she would be putting her baby in danger and would be responsible for whatever negative outcomes arose. She reported that her doctor said, “If you want to try a natural birth, so be it, but that will be on your head. And if anything happens to the baby its your fault”; a refrain repeated by other women. As we have seen, women saw medical technologies as offering objective and clear evidence about the well-being of their fetus and deferred to expert knowledge about medical time and its relation to ‘emergency’.

Although ambivalent about the shift from natural to caesarean birth, women accommodated surgical birth in two ways. Firstly, they framed the intervention as necessary for the well-being of the baby, as described above. This had the effect of making them “good mothers”, willing to bear the consequences of a medical intervention for their children. Secondly, they drew on their preparation for ‘natural’ birth and their birth plans to shape their experiences and perceptions of the birth and mediating their distress at unexpected and undesired caesarean sections. While the “degrees of emergency” shaped how much of their plan was materialised, their preparation reinstated elements of ‘the natural’ into the surgical experience. With hindsight, women spoke about the importance of having had a fetally-initiated labour; having been able to labour, even if only briefly; ‘the crawl’ and holding their unwashed baby immediately post-birth; waiting for the umbilical cord to stop pulsating before being cut; initiating breastfeeding immediately – all features of natural birth planning models in which they had immersed themselves. Indeed, as Catherine, a doula, exuberantly exclaimed at one of the birth preparations Koster attended, “I just assisted the most natural emergency caesarean section ever!” Her comment demonstrates the complex juxtapositions and interconnections of “emergency caesarean” and “natural birth.” Dimmed lights, soft music, quiet voices accompanied the emergency caesarean. The umbilical cord was left to finish pulsating, skin-to-skin contact was immediate and the infant crawled to the breast. These are key criteria in many women’s birthing plans and became important dimensions of how women came to terms with unanticipated caesarean sections.

 

Conclusion

As Daphne de Marneffe (2004) notes, ambivalence is a central part of human experience in relation to others, institutions and social structures. Yet that ambivalence is frequently overwritten by discourses of “the good birth”, “the good mother” and so forth. Preparation for natural birth can facilitate acceptance of caesarean sections that have been produced and experienced as medical emergencies, even if framed as ‘elective’. This does not necessarily offset the potential negative consequences of caesarean sections (e.g. higher rates of maternal depression, difficulties in breastfeeding, etc.), but it does suggest that too simple a bifurcation between natural and technocratic birth ignores the ways in which birthing – even technocratic birthing – is experienced as a process. We have argued that in settings where unduly high rates of caesarean section are produced through medical understandings of emergency, women make sense of their experience by drawing on both prevailing cultural models (the good mother) and by reframing their preparations for birth.

 

References

Beckett, K., 2005. Choosing Cesarean: Feminism and the politics of childbirth in the United States. Feminist Theory, 6(3), pp.251–275.

Chadwick, R.J. & Foster, D. 2013. Negotiating risky bodies: childbirth and constructions of risk. Health, Risk & Society, 16(1), pp.1–16.

Davis-Floyd, R. 1992. Birth as an American rite of passage. Berkeley: University of California Press.

Davis-Floyd, R. 1994 ‘The Technocratic Body: American Childbirth as Cultural Expression’, Social Science and Medicine, 38(8), pp. 1125–40.

Davis-Floyd, R & Sargent, C. 1997. Childbirth and Authoritative Knowledge: Cross-Cultural Perspectives. University of California Press: California.

De Marneffe, D. 2004. Maternal Desire: On Children, Love and the Inner Life. Back Bay Books: New York.

Gray, A. & Vawda, Y. 2016. Health Policy and Legislation. In: South African Health Review 2016. A. Padarath, J. King, E. Mackie, & J. Casciola, Eds. Durban: Health Systems Trust

Jordon, B. 1993. Birth in Four Cultures: A Cross Cultural Investigation of Childbirth in Yucatan, Holland, Sweden, and the United States. Illinois: Waveland Press, Inc.

Kitzinger, S. 1984. A Celebration of Birth. Penguin: London

Koster, T. 2016. Abled bodies: A close ethnographic account of how control settles in middle class women’s expectations to have a ‘natural’ birth and experiencing an alternate birth outcome. Unpublished Honours Thesis. University of Cape Town

Lazarus, E. 1994. What do women want? Issues of choice, control, and class in pregnancy and childbirth. Medical Anthropology Quarterly, 8(1), pp.25–46.

Lupton, D. & Schmied, V. 2013. Splitting bodies/selves: Women’s concepts of embodiment at the moment of birth. Sociology of Health & Illness. 35 (6), pp. 828-841.

Macdonald, M. 2006. Gender Expectations: Natural Bodies and Natural Births. New Midwifery in Canada, Medical Anthropology Quarterly, 20(2), pp.235–256.

Nash, M. 2011. “You don’t train for a marathon sitting on the couch”: Performances of pregnancy ‘fitness’ and ‘good’ motherhood in Melbourne, Australia. Women’s Studies International Forum, 34(2), pp. 50-65.

Rogerson, J. 2016a. Critical interventions in birth in the first 1000 days, Somatosphere. Available at: http://somatosphere.net/2016/04/critical-interventions-in-birth-in-the-first-1000-days.html

Rogerson, J. 2016b. Constructing birthing models, building care relations: motherhood and recognisability in an elite version of midwifery care in South Africa. Unpublished Ph.D. thesis. University of Cape Town.

Simonds, W. 2002. Watching the clock: Keeping time during pregnancy, birth, and postpartum experiences. Social Science & Medicine. 55(4), pp.559-570

WHO, 2015. Who Statement on Caesarean Section Rates. World Health Organisation.

Wolf, N. 2003. Misconceptions: Truth, Lies and the Unexpected on the Journey to Motherhood. New York: Double Day.

 

Terena Koster completed an Honours degree in Social Anthropology at the University of Cape Town as part of the First 1000 days research group. She is currently pursuing her Masters in Environmental Humanities at the University of Cape Town. Her research interests are in medical anthropology, environmental governance, conservation, and food.

Fiona C. Ross is Professor of Anthropology at the University of Cape Town, where she currently holds a four-year research position investigating ideas about life that are given form in contemporary research on the first thousand days.  That work examines the kinds of knowledges that inform contemporary state policy and traces their effects in the constitution of everyday practices of reproduction and child-rearing in the Western Cape province of South Africa.  Her broad area of research is concerned with formations of life in apartheid’s aftermath. She is author of Bearing Witness: Women and the Truth and Reconciliation Commission (Pluto Press 2003) and Raw Life, New Hope: Decency, housing and everyday life in a post-apartheid community (UCT Press 2010).  She is co-editor of Ethical Quandaries in Social Research (HSRC Press 2014) and has published widely in Anthropology.

Speculation, Certainty and the Diagnostic Illusory: The Tricorder and the Deathless Man by Thierry Jutel

18 Juillet 2017 - 4:55pm

In the paragraphs which follow, we will be discussing the ways in which two pieces of speculative fiction, the science fiction film Star Trek IV: The Voyage Home, and the novel The Tiger’s Wife use diagnostic and prognostic certainty as part of their creative narratives. In both cases, the confidence vested in the diagnosis and its outcome is contrasted to the “diagnostic illusory” of contemporary medicine.

Even while diagnosis is medicine’s primary classification tool, it is far less circumscribed than diagnostic taxonomies suggest, as well as the power afforded those who diagnose. Even very material conditions have porous boundaries (Jutel 2013) which muddy the waters in a system that is based on tidy categories. Sarah Nettleton and her colleagues have developed the term “diagnostic illusory” to describe how medicine invests in generalisation as a way of understanding disease. In the diagnostic illusory, for the cases that resists classification, or perturb a diagnostic category, one turns to ever-more sophisticated forms of technology, with the belief that it’s just a matter of time before the explanation will become clear, and the diagnosis justified. Nettleton and her colleagues raise the idea of “illusory” to highlight the “ambiguities and nuanced complexities associated with the biomedical imperative to name and classify” (Nettleton, Kitzinger, and Kitzinger 2014).

In this short essay, we will explore how two speculative texts represent diagnosis, highlighting through their respectively futuristic and supernatural approaches the yearnings of contemporary medicine, and the society it serves, for diagnostic certainty.

 

Star Trek IV: The Voyage Home and the Tricorder

In the science fiction epic Star Trek IV: The Voyage Home (Nimoy 1986), the Starship Enterprise and its crew have come back to planet earth in 1986 to save the humpback whale from extinction and by extension, to save planet earth from destruction in the future. This year is both the year the film was produced and three centuries earlier than the narrative starting point for the film, 2286 BCE. While they are in 1986, Chekov, one of the crew members is gravely injured, and is taken to a 1980s San Francisco hospital by emergency services. When the spaceship crew learn of Chekov’s predicament, the on-board medical doctor, McCoy, pleads with the Admiral: “Jim, you’ve got to let me go [to the hospital]. Don’t leave him in the hands of twentieth-century medicine!” Even the hyperrational Spock butts in: “Admiral, may I suggest that Dr. McCoy is correct? We must help Chekov….It is the human thing to do.”

This exchange introduces an implicit distinction made by the characters but that the viewers will clearly understand: twentieth-century medicine is old-fashioned, ineffective, and even barbaric. Admiral Kirk faces the choice of leaving one of his crew members to the backward and ultimately deadly grasp of the medicine contemporaneous to the film’s viewers. He agrees they can go to Chekov’s rescue.

In order to save Chekov, Kirk and McCoy dress as twentieth-century surgeons and enter the hospital where Chekov has been admitted. They masquerade as surgeons so as to obtain access to otherwise off-limit parts of the hospital, and to exercise power and authority over security personnel and other medical staff. Fans of the show will be able to predict what will ensue: the superior power of the twenty-third century medicine will enable the U.S.S. Enterprise doctor to save his crewmate in minutes. There is never any doubt; the scene employs a narrative strategy to observe with expected wonderment McCoy’s futuristic diagnostic skills and therapies. In other words, the narrative pay-off of the deployment of medicine as practiced by McCoy in the Star Trek series (and in the television series) is the speculative projection into a better future wherein technologies have resolved many of the limitations of medicine present for those watching the film.

Since this film is set simultaneously in the future and in the present, the filmmakers are able to stress this point even further as if in acknowledgment to the position of the audience watching the film. How better to show the superiority of future medical knowledge and technology than to contrast these explicitly with those of the present?

To underline this contrast, even before Chekov is saved, when McCoy—dressed as a surgeon and on his way to save his starship colleague—is stopped by an elderly woman who has been left waiting in an hospital corridor. “What’s wrong with you?” he asks. She replies: “kidney dialysis” as if this constituted some kind of diagnosis. McCoy is morally outraged: “Dialysis? My God. What is this, the dark ages?” He hands a pill to the woman, gently taps her face a few times and adds “Here. Now you swallow that, and, if you have any more problems, just call me.” Shortly afterwards as he overhears doctors talk about 20th century cancer treatment (“radical chemotherapy”; “image therapy”) he comments” “Unbelievable.…It sounds like the goddamn Spanish Inquisition to me!”

McCoy has access to advanced technologies and medication yet he understands twentieth-century medical practices and hierarchies even if they are to him archaic and criminal. Once at Chekov’s side in the operating theatre, he will whip out the medical “tricorder,” a hand-held device McCoy regularly uses in the television series to diagnose his patients. As McCoy deploys this tool, the twentieth-century surgeons are puzzled — in contrast to the viewers who know all about it, and even its name, which explains why when the surgeon asks what the instrument is, McCoy does not need to answer. “My God, man. Drilling holes in his head is not the answer… Put away your butcher knives and let me save this patient before it is too late” and later “We are dealing with medievalism here!” Of course, Chekov is saved through McCoy’s diagnostic technologies and superior array of treatments.

But as we have shown, this scene makes a nod towards the audience who can recognise the portrayal of their medical institutions and practitioners and can fully concur with McCoy’s perspective of an antiquated and dangerous context for practicing medicine.

 

The Tiger’s Wife and The Deathless Man

The deathless man is a fictional character in Téa Obreht’s novel The Tiger’s Wife (2011). The Tiger’s Wife is narrated by Natalia Stefanović, a doctor, and the grand-daughter of Dr. Leandro, whose story this novel sets out to relate. That these two prominent characters are doctors, of Western biomedicine and of the contemporary era, is an important point of contrast, as in Star Trek IV, to the speculative prognostic practices we will see as the story unfolds. In this case, contemporary medicine is not barbaric, but limited. It seeks, and indeed sometimes achieves certainty, but a certainty which pales in comparison to the certainties that the deathless man can deliver.

In this novel, the certainty of speculative diagnosis is predictive. It is underlined by regular encounters of a distinguished medical doctor, Leandro, and a mysterious supernatural physician, the deathless man. Their evolving relationship as the former progressively comes to accept the latter, punctuates the limits of Leandro’s medical prognostic capacity, and the omniscience of the deathless man.

The novel starts at Leandro’s death. In the Balkans, where the novel is set, people believe the soul has forty days after death to retrace its life before returning home, to settle in with the people it left behind. It is a journey which involves the home and its inhabitants, as the soul rummages through the drawers, the memories, the closets of the place in which it dwelled during life. As the grandfather died far from home, for reasons which elude his family, Natalia goes in pursuit of his body and belongings, to bring them home to the family. While she does so, she takes the narrative pathway her grandfather’s soul might have, relating the stories he had shared with her about his life. Woven through this narrative is the tale of the deathless man, who is the supernatural diagnostician upon whom we will focus in the paragraphs to come. The reader cannot help reflecting upon how the supernatural trumps conventional medicine in terms of what matters most: life and death.

The deathless man, Gavran Gailé, is also a doctor. He received this profession as a coming-of-age gift, from his uncle, Death. His diagnostic skills surpass those of Western biomedicine, because he can tell whether a person will live or die. He discerns this by the use of a magic coffee cup, also gifted by his uncle, the dregs from which will either point towards life or towards death after a person has drunk from it. Gailé is to break the cup of those whose dregs point towards life, and leave intact the cups of those who will die. But, he fails in his task by falling in love with a dying woman, whose death he rejects. He assists her to break the cup, time and again, so that she will not die. As punishment, Death ends up claiming the woman, and prevents Gailé from ever dying himself.

The deathless man then travels to people who are ill, and tells them of their diagnosis and their impending death. “If they know—if they have thought about it—sometimes the struggle is less and less” (p. 187), he explains to Dr. Leandro.

The deathless man only appears in this novel to Dr. Leandro. Leandro is himself a fine doctor, who is known for his skill in training expert diagnosticians, and also for memorably saving the life of the Marshall. He was at a wedding party for a colleague, but was the only sober doctor when the innkeeper came looking for help for a dying man. Leandro quickly diagnoses a ruptured appendix, and saves the man’s life. He will forever be known as the man who saved the Marshall. This diagnostic moment cements a hierarchy. Leandro’s diagnosis replaces that of an incompetent herbalist, who believed the Marshall was suffering from food poisoning. Leandro knew “instinctively” that this was a ruptured appendix that he would fix surgically. His exceptional diagnostic skills, however, cannot compete with those of Gailé.

When Gailé first appears in the novel it is because Leandro has been asked to come see about a “new development” in a village where people are coughing blood. He expects he will be diagnosing tuberculosis. Gailé has died, but at the time of his funeral, sits up in his coffin and asks for water to drink. Someone, fearing the devil, shoots him dead again. However, Leandro finds that Gailé is neither dead, nor ill, and has a long talk with him. Gailé explains to Leandro the circumstances: a man tried to kill him, by first drowning, then shooting him, because he was upset at the news Gailé had given him: “He was dying of tuberculosis…I only came to tell him, to help, to be here when it happened. Come now, Doctor—blood on pillows, a terrible cough. What was your diagnosis even before you came here?” (p.70)

The deathless man and Dr. Leandro will meet repeatedly over the course of the novel. To start with, Leandro is completely sceptical, and will even test Gailé’s claims of immortality by trying to drown him. However, by the end, the two talk together, complicit as almost-colleagues, about the importance of diagnosis.

At Gailé’s last appearance in the narrative, he stops diagnosing. He chooses to conceal, rather than announce the arrival of death. This plays out in a scene where Gailé and Leandro meet by chance at a restaurant in a town to which Leandro has returned nostalgically during the war. It was here he ate lobster on his wedding day. When he sees Gailé, he wonders if the latter is here to announce Leandro’s own death, accepting finally, Gailé’s supernatural skills. He is not. Gailé has come to await the deaths of those who will perish in the upcoming siege of Sarobor. The old and distinguished Muslim waiter at the restaurant in which they meet is amongst those who will meet their fate. “I am not warning that man because his life will end in suddenness. He does not need to know this, because it is through the non-knowing that he will not suffer” (p. 300) says Gailé. He resigns himself to no longer diagnosing the dying, but rather to keeping them happy in advance of their death.

In the Tiger’s Wife, the traditional purveyor of biomedical certainty, Leandro, is juxtaposed to a certainty, Death, over which he has no control, and no clear knowledge. Nothing is certain in life but death, and Gailé’s ability to pronounce its arrival is placed in stark contrast to the illusory certainty of modern medicine.

We wrote this essay to highlight examples of how speculative fiction deals with the problem of diagnostic certainty. Both Star Trek and The Tiger’s Wife count on a viewer who is certain, even if the setting leads to some confusion. This is particularly vivid in Star Trek, where Trekkies can read Dr. McCoy’s crankiness as a sign of his certainty about things not being as they should. They wait expectantly for him to swipe out the tricorder, as he does, time after time in episode after episode of the series. McCoy’s credibility as a medical practitioner is in great part measured by his at-times antiquated and hysterical appeals to humanity throughout the entire series. It’s a moment of light relief, as the viewers see this in-the-future doctor shove the 20th century doctors out of the way (literally – they get locked up in the scrub room), but it’s never a moment of doubt. The tricorder’s diagnostic powers will triumph, and the crew member will be saved.

Contrast that to the tension and anxiety of the contemporary doctors, as they labour over Chekov. While they may be certain about his diagnosis (the drill poised to release a sub-dural hematoma is the clue), the film underlines the fallibility of the diagnosis and certainly McCoy’s distrust of the other physicians, as it gets superseded by the tricorder’s readings. The speculative nature of this diagnosis is less important than the measure of the gap between the medicine of the future and today’s medicine. It doesn’t really matter what machine Dr. McCoy uses to practice medicine in 2286, it is more about the fact that in the future, our present medicine will look archaic.

Paradoxically, perhaps, it is more the humanity of the Star Trek crew, and of the characters of The Tiger’s Wife, that end up being highlighted by these speculative practices. In The Tiger’s Wife, the metaphysical certainty of death appears in the guise of a physician. We shouldn’t be surprised. From the advent of scientific medicine, doctors have been afforded a putative authority in the definition of the future. Their pronouncements in relation to diagnosis are referred to as “truths,” revealing the moral content of the clinical relationship, and instilling the doctor with a God-like authority. But the human doctor will have to shuffle aside.

Leandro is displaced by death. Not only because he dies himself—indeed the entire novel is based on seeking solace for his recently-dead soul. As a biomedical doctor, the limits of his episteme are clearly accentuated. He may try to outwit death, announce death, but Gailé has a connection to death that conventional medicine could never access. Being immortal also prevents Gailé from being human, a condition he craves, as it alone allows the expression of love he felt for the woman whose death he wished to prevent.

Both of these examples reveal medical diagnosis as a kind of “sociotechnical imaginary”  (Jasanoff and Kim 2015). Contemporary diagnosis fails in the two areas that these speculative diagnoses succeed, that is to say in production of an absolute certainty of cause (so that a remedy can be put in place), and in the absolute link to prognosis (tomorrow you will die). When we say “tell me the truth doctor” we are usually asking for answers to these questions: what does this diagnosis mean, and how long have I got? The answers are commonly inadequate in medicine but are handily managed in these speculative texts.

These are creative constructions, not didactic ones. By considering a future or a supernatural medicine which could be certain, we find a pleasant sense of reassurance. Indeed, this comfort has seeped out into medical innovation, where new forms of diagnostic technology are frequently referred to, maybe tongue in check, as “tricorders.” We don’t see this as evidence of what Ari Schick (2016) has referred to as science-fictionality, “a cognitive/perceptual mode in which the imagined future begins to exert increasing degrees of influence on the present” — we see this instead as recognition of Nettleton and the Kitzingers’ diagnostic illusory. It sheds a light on the degree to which certainty in diagnosis, and in its associated social goods — treatment and prognosis — are an always-elusive and a paradoxical ambition to which contemporary medicine aspires.

 

References

Jasanoff, Sheila, and Sang-Hyun Kim. 2015. Dreamscapes of modernity: sociotechnical imaginaries and the fabrication of power. Chicago ; London: The University of Chicago Press.

Jutel, Annemarie. 2013. “When pigs could fly: influenza and the elusive nature of diagnosis.” Perspectives in Biology and Medicine no. 56 (4):513-29. 

Nettleton, S., J. Kitzinger, and C. Kitzinger. 2014. “A diagnostic illusory? The case of distinguishing between “vegetative” and “minimally conscious” states.” Soc Sci Med no. 116:134-41.

Nimoy, Leonard. 1986. Star Trek IV:  The Voyage Home. Paramount Pictures.

Obreht, Téa. 2011. The tiger’s wife : a novel. New York: Random House Trade Paperbacks.

Schick, A. 2016. “Whereto speculative bioethics? Technological visions and future simulations in a science fictional culture.” Med Humanit no. 42 (4):225-231. 

 

Thierry Jutel is Associate Professor of Film at Victoria University.  He has recently published on the diagnostic moment in film.  He writes about contemporary film making and production culture.

 Annemarie Jutel is Professor of Health at Victoria University.  She is a critical diagnosis scholar, whose scholarship is concerned with the social and cultural framing and consequences of the diagnostic process.  She is the author of Putting a Name to It:  Diagnosis in Contemporary Society.

The Speculative Health series is edited by Matthew Wolf-Meyer.

Human Contamination: The Infectious Border Crossings of Jeff VanderMeer’s Area X by Sophia Booth Magnone

6 Juillet 2017 - 6:41pm

“What if an infection was a message, a brightness a kind of symphony? As a defense? An odd form of communication? If so, the message had not been received, would probably never be received” (Acceptance 490).

“What if containment is a joke?” (Acceptance 576).

It all begins with a thorn: the delicate, glittering prickle of an unidentified plant growing at the base of a lighthouse in a sleepy coastal town. On a peaceful sunny day, the thorn pricks a man’s thumb, an act of violence so mild, so mundane, it scarcely attracts notice. Yet the end of the world starts there, where one organism pierces the skin of another. That tiny rift swells to a full-fledged invasion; the man and his lighthouse become the first targets of an inexplicable transformative force. When the initial cataclysm subsides, the coast has been purged of all human life, its inhabitants dead or transformed beyond recognition. The rest of the world is left only with questions. What exactly happened at the lighthouse? What lies dormant in that lonely landscape? Most importantly, how can whatever remains there be contained?

This nebulous, quietly sinister premise forms the foundation of Jeff VanderMeer’s novels Annihilation, Authority, and Acceptance, collectively known as the Southern Reach trilogy. The novels take place, for the most part, thirty years after the mysterious event at the lighthouse, which has been officially categorized an “environmental disaster” and, by most people, forgotten about entirely. Only the government organization known as the Southern Reach continues to investigate the cordoned-off region now designated “Area X”: from the byzantine depths of its crumbling bureaucracy, the Southern Reach dispatches research expeditions, interprets findings, and scrabbles desperately at the possibility of defensive action. For Area X is growing, and it threatens, like a thorn stealthily penetrating a thumb, to infiltrate the very substance of the world.

One way to read the Southern Reach trilogy is thus as a story about borders: about the order and security they promise, the function of the divisions they uphold, and, most bewitchingly, about what happens when they are breached. Borders structure the world of the Southern Reach trilogy at every scale. The most prominent border is the one separating Area X from the rest of the world; it is a high-security zone patrolled by armed guards, officially passable only by approved expedition members placed under hypnosis. Because of its history of “environmental disaster,” Area X is under perpetual quarantine; the border acts to keep the human world safe, in theory, from whatever remaining hazards Area X’s weird biome might harbor. Each expedition member also carries a personal version of that border, writ small, as they venture into Area X: they are trained to protect their bodies against infection from foreign ecosystems, keeping a safe distance from contaminants and using breathing masks in risky situations. If the Southern Reach has learned one thing from decades of research, it is that skin, on its own, is a feeble border indeed.

Both forms of the border, geographic and personal, are fundamentally concerned with the division between human things—bodies, populations, communities—and nonhuman things that threaten to get in where they don’t belong—thorns, infections, monsters. Both are thus embedded in broad-based cultural norms of sickness and health, contamination versus purity. Borders enforce the principle that a healthy body (whether a human, an environment, or a nation) exists in a state of boundedness, closed off to invaders. A body that leaks and oozes, overflowing its boundaries and mixing with the outside world, is considered suspect—improper, diseased, and potentially dangerous.


In VanderMeer’s story, the health of individual human bodies and the body of planet Earth itself are equally at stake, and deeply entangled. Yet as the Southern Reach’s human operatives cling to the comforting myth of prophylaxis, the unfolding story makes clear that borders are human ideas: partial, temporary, and, faced with the messy interconnectedness of ecological growth, ultimately irrelevant. Infection, contamination, and mixture are Area X’s biological imperatives; the place infiltrates the bodies of expedition members as it infiltrates the whole world beyond the border. The result is the loss of what the Southern Reach is trying to safeguard: the purity and coherence of the human species. Whether Area X’s infection of the human world constitutes a move toward sickness or wellness is the series’ unanswerable central question.

***

The text of Annihilation, the first novel in the series, is presented as the expedition journal of a woman identified only as “the biologist.” Names are discouraged on Southern Reach missions, and while most recruits find it difficult to detach from their personal identities, the biologist gives hers up without a twinge of nostalgia. This nonchalance toward social norms is characteristic of a woman whose defining trait is a profound affinity for the nonhuman world. By her own admission, navigating the company of humans has always been difficult for her; in snatches of sparse prose scattered across her journal, she sketches the contours of an unhappy childhood, a solitary adulthood, a tumultuous marriage troubled by an unbridgeable gulf. Yet from the biologist’s perspective, her inherent distance from humankind is not a tragic flaw: it is simply the nature of this organism to orient toward other forms of life. To the chagrin of her gregarious husband, who wistfully nicknames her “Ghost Bird” for her spectral presence in his life, the biologist’s primary relationship is with the natural world. “Fun for me was sneaking off to peer into a tidal pool, to grasp the intricacies of the creatures that lived there,” she explains. “Sustenance for me was tied to ecosystem and habitat, orgasm the sudden realization of the interconnectivity of all things. Observation had always meant more to me than interaction” (Annihilation 72; all quotes are from Annihilation unless otherwise specified).

Ill at ease in human society and driven always to observe, the biologist’s personality and line of work combine to attune her to the fascinating possibilities of nonhuman life on a macro and micro scale. It is fitting that, several days into the expedition, her biophiliac curiosity brings her too close to the dangerous lifeforms of Area X. On an exploratory mission with two fellow recruits, the biologist descends the spiral staircase of an underground tower. The team is startled to discover along the tower’s left-hand wall a seemingly endless line of cursive script, written in the curling filaments of an unknown fungus and peppered with tiny hand-shaped creatures. Entranced by the mysterious ecosystem of the words, the biologist momentarily lets down her guard:

I leaned in closer, like a fool, like someone who had not had months of survival training or ever studied biology. Someone tricked into thinking that words should be read.

I was unlucky—or was I lucky? Triggered by a disturbance in the flow of air, a nodule in the W chose that moment to burst open and a tiny spray of golden spores spewed out. I pulled back, but I thought I had felt something enter my nose, experienced a pinprick of escalation in the smell of rotting honey. (17)

Just as the Southern Reach guards the border separating Area X from the human-occupied world, expedition members are instructed to zealously maintain personal borders between their bodies and Area X’s biota. Here, that personal border is breached—not violently, but subtly, through the spores’ delicate invasion of the biologist’s nose. Though she keeps her inhalation a secret from the group, the biologist knows instantly that what has happened is a “contamination” (17). Area X has entered her body, has infected her, and she is not the same as before.

Throughout the remainder of Annihilation, the biologist records the gradual sculpting of her body by the spores’ mysterious program as the infection takes hold. Her senses intensify; her reflexes heighten; her capacity for healing quickens. Her skin develops a phosphorescent glow. She feels an irresistible, growing affinity—what she can only describe as a “brightness” (55)—toward Area X and its inhabitants. By Annihilation’s final pages, the biologist is only partly human. By the time the reader approaches the end of the trilogy’s final volume Acceptance, she has become something else altogether. Something entirely different. “In all her glory and monstrosity” (Acceptance 492).

***

According to Jeff VanderMeer’s account of writing the Southern Reach trilogy, the idea for Area X came out of two overlapping conditions: “dental surgery along with anger and grief over the BP Gulf Oil Spill.” Suffering from serious illness following an extraction and root canal, VanderMeer finds his anxieties about the environmental devastation wreaked by the 2010 spill transformed into a “dark dream”—a sunken tower, words made of fungus, the scrawling of an unknown entity far below—whose elements eventually spin out into a three-volume story. The trilogy is born at the crossroads of environmental devastation and personal illness: oil infiltrates the gulf as Streptococcus infiltrates his own immune system. Two forms of contamination converge in a feverish bout of writerly inspiration.

It is easy to identify echoes of Vandermeer’s experience in the emphasis on borders, both geographic and personal, that structures the story of Area X. Yet the implications of contamination become far more equivocal when transferred from reality to fiction. The oil spill and its massive poisoning of local ecosystems is an unquestionable tragedy for human, animal, and plant life; the disaster epitomizes a situation where the border between human things (drilling rigs, extracted oil) and nonhuman things (bodies of water, marine life) should, ideally, have been impenetrable. But Area X is not an oil spill. Indeed, it is the opposite: a rare site of pristine wilderness in a heavily polluted world. Life thrives in its rich biosphere, where ecosystems of the forest, swamp, salt marsh, and marine coast overlap. Area X is home to otters and wild boars, velvet ants and damselflies, purple thistles and tall pines, cormorants and owls, among many other known and unknown species.

In contrast, the human world, protected behind the border maintained by the Southern Reach, lacks such vibrancy. Development, industrialization, and pollution have all taken their familiar toll. From the biologist’s perspective, “the world back beyond the border was what it had always been during the modern era: dirty, tired, imperfect, winding down, at war with itself” (20). Area X offers a land cleansed of human contamination and enthusiastically flourishing. Even the air is noticeably different: “so fresh it buffeted the lungs” (8), its cleanliness renders it almost unbreathable to expedition members inured to smoggy skies.

So while the function of the heavily-guarded border is to quarantine, to protect from contamination, the strange circumstances of Area X yield confusing uncertainty about which side is being protected from the other. “I understood why no one lived in Area X now, that it was pristine because of that reason,” writes the biologist, “but I kept un-remembering it. I had decided instead to make believe that it was simply a protected wildlife refuge, and we were hikers who happened to be scientists” (9). Area X is at once a nature preserve under protection from the ravages of development, and a disaster area quivering with biohazards that threaten to leak across the world: both impossibly healthy and dreadfully diseased. Several scholars, including Matthew Masucci and Brian Onishi, note the trilogy’s self-conscious repetition of “pristine wilderness” to describe Area X, and the paradoxical horror imbued in that normally pleasant phrase. While “pristine” implies an original, unspoiled condition, Area X is “pristine” only in the sense that no humans currently live there: the former settlement and all of its impacts have been absorbed and overwritten by nonhuman nature, but no one who enters it can forget that the land is in its post-human, not pre-human, stage of growth.

The creeping horror of VanderMeer’s trilogy emerges from the threat that this “pristine wilderness” presents to the human world. Yet the nature of that threat is far less clear than the threat of 780,000 cubic meters of oil to a marine ecosystem. Area X cultivates a testing ground for a permeable border between human and nonhuman things. The Southern Reach organization is officially dedicated to controlling and reversing that permeability. But the biologist’s unorthodox point of view permits a recurring question: Is Area X really a threat at all? Might it offer, rather, a possibility to be embraced?

The answer depends on one’s investment in the status quo of the Anthropocene, the modern geological epoch defined by the drastic shaping of the planet’s terrains, climates, and ecosystems by human activity. It depends on the value one places on preserving the human species in its current form, with its current capacity for planetary domination, and how liberally one is willing to define the notion of a “healthy” planet. Area X’s infiltration of the borders erected against it inaugurates a massive change for planet Earth, the beginnings of what David Tompkins calls “a comprehensive reversal of the Anthropocene Age.” Is it important, the trilogy asks, that the human species, the instigator of so much damage, survive such a cataclysm? What counts as survival, anyway—is it only the unaltered reproduction of a current form, or does it involve metamorphosis, evolution, adaptation? What might be gained by perforating the border between the human and nonhuman world, by letting the latter, for a change, infect the former?

***

VanderMeer’s biologist is uniquely positioned to process her mysterious infection with an open mind. Her interest, after all, is the study of life in all its variety, the constant exchanges and encounters between organisms. From her perspective, the infection of one organism by another is not a crisis, but a novel phenomenon to scrutinize—even in her own body. This cavalier approach to sickness, the reader learns, was a point of contention between the biologist and her husband, a medical professional. As she documents the infection’s early stages—mild fever, coughing, light-headedness, and other symptoms of a low-grade cold—she imagines his reaction: “My husband would have been proactive about the brightness. He would have found a thousand ways to try and cure it—and to take away the scars, too—and not let me deal with it on my own terms, which is why during our time together I sometimes didn’t tell him when I was sick” (100). Her husband’s approach to disease is not only to pursue an immediate cure, but to erase any traces of sickness, as if the state of health had never been interrupted. But for the biologist, sickness has its own value, scars their own form of interest. Letting herself be sick, “deal[ing] with it in her own terms,” becomes a stealthy act of independence from her husband and his urge to fix.

Getting sick is far graver in Area X, however, than in the world beyond the border. The biologist’s expedition has no doctors, few medical supplies, and uncertain means of exit. Furthermore, the unknown nature of the ecosystem and the unspecified disaster that has occurred there bestows high stakes on any infection. Previous expedition members have suffered a range of mental and physical maladies. In one expedition, members commit group suicide; in the next, they go to war against one another. Members return from the most recent expedition as blank, disaffected shadows of their former selves, dying of systemic cancer six months later; among the afflicted was the biologist’s husband, the expedition’s medic. The biologist wonders, too, about what might have become of those who didn’t return from Area X. Strange animals roam the landscape: a charging boar with an anguished expression; a reed-dwelling creature emitting plaintive moans at dusk; a freshwater dolphin with a “painfully human” eye (64). This uncanny menagerie of apparent human-nonhuman hybrids suggests one possible outcome of an Area X-borne infection: contamination may be the first step in the breakdown and eventual transformation of human being.

But being human is just not that important to the biologist, who seems to identify more as an organism than as a person. She has come to Area X fully aware of the journey’s potentially toxic effects: after all, she watches firsthand as her husband wastes away from cancer and from the mysterious blankness that makes him a stranger to her. But she suspects that whatever happened to him, and to every hapless voyager before him, might happen differently to her. In her, Area X’s infection might run a different course: not a sickening, but a becoming. As she remembers looking into her dying husband’s eyes, she recalls seeing “a deep and unending solitude, as if he had been granted a gift that he didn’t know what to do with. A gift that was poison to him and eventually killed him. But would it have killed me?” (55). Only the prickly, antisocial biologist, oriented from childhood toward the nonhuman world, can appreciate Area X’s influence as a gift, rather than a deadly poison. If its effect is to contaminate human beings with a profound “solitude,” to rip them from human society and assimilate them into its strange wilderness, the biologist’s allegiance toward nature over culture suggests she may be ready to meet Area X halfway.

Her account of the infection and its progress is thus marked by extreme ambivalence. “I was unlucky—or was I lucky?” (17), she writes of the (un)timely spray of golden spores into her nose. The expected position to take toward this life-changing event would, of course, be “unlucky”: based on what she knows of previous expeditions, contamination threatens her health, mental stability, even her very humanity. The biologist does not disavow the expected judgment “unlucky,” but she does add an alternative, holding “lucky” and “unlucky” in tandem. Contained in the possibility that her infection could be “lucky” is a radical departure from standard human-centered systems of value. It takes the biologist’s indiscriminate fascination with life in all its forms, with the changes and disruptions inherent to biotic processes, to consider contamination by Area X a positive occurrence in the development of a human organism.

Indeed, the spores’ effects seem, in many ways, to confirm and enhance the biologist’s natural state, rather than drastically change it. After a lifetime spent intensely observing the natural world, she experiences her newly heightened attunement to her surroundings with obvious joy. “The wind picked up, and it began to rain,” she recounts shortly after her infection. “I saw each drop fall as a perfect, faceted liquid diamond, refracting light even in the gloom, and I could smell the sea and picture the roiling waves. The wind was like something alive; it entered every pore of me and it, too, had a smell, carrying with it the earthiness of the marsh reeds” (50). As her sensorium is reshaped, she perceives her environment with increasing intimacy, feeling herself a part of it and it a part of her.

To someone else, someone more invested in the human part of their identity, such ecological attunement might feel alarmingly new. To the biologist, it is deeply familiar. “My sole gift or talent, I believe now,” she writes of her life pre-expedition, “was that places could impress themselves upon me, and I could become a part of them with ease” (72-73). This willingness to receive—to let the substance of her own identity be imprinted by her environment, like pliant clay—is what makes her a good biologist, and a bad human. For to become fully part of an ecosystem, one must stop being a human, must give up the species-specific behavior of observing, interpreting, and dominating the natural world, and instead start being simply an organism among other organisms. Area X enforces that protocol on everyone who enters it: within its borders, unlike in the outside world, there are no special privileges associated with being human. It takes an unconventional kind of human to accept that condition, but the biologist is a rare bird indeed. “‘You prefer this place, you really do, don’t you?’” accuses a fellow expeditioner, her voice infused with “a kind of pity or disgust” (47) for what she perceives as the biologist’s lack of survivalist gumption. But the biologist intends to survive in Area X. It just doesn’t matter to her, ultimately, as what.

***

At the same time, some hesitation prevents the biologist from succumbing totally to the seduction of Area X. There are elements of humanity that she wants to preserve in herself, securing her personal borders against complete rupture. For although the biologist is more interested in ecosystems than in humans, she is by no means a misanthrope, and the evidence she uncovers of Area X’s violent disregard for human life sickens her. As the expedition crumbles and the biologist explores the territory on her own, she finds evidence of terrible suffering. An abandoned village houses human-shaped eruptions of vegetative matter—apparent casualties of the cataclysmic event thirty years prior. At the lighthouse, the destination of several earlier expeditions, bloodstained walls and overturned tables riddled with bullet holes bear witness to “unspeakable and sudden violence” (67). The biologist, not overly given to emotion, is yet haunted by these scenes, which sour her characteristic attachment to the landscape. “Nothing beautiful here fooled me anymore,” she writes. “Human lives had poured into this place over time, volunteered to become party to exile and worse. Under everything lay the ghastly presence of countless desperate struggles. Why did they keep sending us? Why did we keep going?” (78).

Even the antisocial biologist mourns the loss of human life and human connection within the inexorable logic of Area X; she also mourns, in her own quiet way, the loss of her husband. Her moments of dis-ease with the changes Area X brings about in her body and her world prevent VanderMeer’s trilogy from falling into thoughtless anti-humanism. The novels constantly remind the reader that there is much to value in the human world, much to lament in its passing. Notably, they also take for granted the diversity of the human species with regard to gender, race, sexuality, class, background, and other less categorical forms of difference. “Humanity” is not being glossed here as only the white heterosexual American world, as evinced by the range of VanderMeer’s cast of characters: an antisocial female scientist, a gay male lighthouse keeper, a multiracial Latino government agent, a black lesbian bureaucrat. The onslaught of Area X infects all their lives, and countless others’, with pain, confusion, and terror. VanderMeer’s trilogy, with its shifting points of view and emotionally nuanced characters, maintains a fundamental compassion toward all those who suffer from Area X. There is no gleeful celebration of the apocalypse here, no sense of justice at the violent overthrow of the reign of humankind.

What the series offers is, instead, acceptance, the apt title of the final volume: acceptance, if not exactly approval, of Area X and its transformative contamination of humankind. The borders have been breached; change is underway; the notion of a pristine anything (whether a pristine human species or a pristine wilderness) has become, more than ever, an impossible fantasy. The task facing human beings in this new world is not to quarantine the infecting force, as the Southern Reach tries to do, nor to seek a cure to reverse its effects, as the biologist’s husband might urge. It is instead to become part of the place, to let infections run their course, to reconcile themselves to the new kind of organisms Area X has made of them, with whatever dignity they can muster. It is, needless to say, a difficult, even impossible task; most of the series’ characters cannot face it. Only the biologist—she who has made a habit of secreting away sickness and evaporating into ecosystems—can conceive of acceptance as a viable strategy rather than a hopeless defeat. She is, as Mac Rogers writes, “the only hero equal to this story, VanderMeer’s one example of a way forward for humanity.”

It takes her—even her—a long time to reach acceptance. The trilogy’s third volume contains, as a kind of epilogue to Annihilation, the final journal pages of the biologist, recounting thirty years of fighting to stay human inside Area X. She can counter the spread of her infection, she learns, with pain; she writes circumspectly of the self-inflicted wounds she applies regularly as a kind of medicine, temporarily shoring up the borders of her waning humanity. Eventually, she ceases treatment; she lets the “brightness” take hold. What she becomes is something profoundly, magnificently other-than-human: a vast, amphibious creature who moves like the flow of lava and communicates in eerie moans, her body covered with hundreds of barnacle-encrusted craters and glowing, thick-lashed eyes “like flowers or sea anemones spread open” (Acceptance 493).

From an anthropocentric perspective, the biologist’s fate is a tragedy. The transformation of a woman into a lumbering leviathan represents the loss of all those qualities that make humanity special: bipedalism, manual dexterity, cognitive intelligence, rational thought, speech and language, technology, community. Yet VanderMeer’s text opens up space for a monster to be just another form of life: not necessarily worse or better than a human being, but simply different, with different capacities and functions. The biologist, in her human form, maintains an indiscriminate affinity for life in all its diversity. From that biophiliac perspective, what happens to her is not a perversion or debasement, but a metamorphosis; it allows her to inhabit Area X in novel ways, to make her home at land and sea, to perceive her environment more expansively than ever before. The place has impressed itself upon her; she has become part of it with an ease far greater than what she found in the human-dominated world.

The biologist’s final form confirms her as a creature of borderlessness. She becomes, in the eyes of one observer, “an animal, an organism that had never existed before or that might belong to an alien ecology. That could transition not just from land to water but from one remote place to another, with no need for a door in a border” (Acceptance 494). Her massive, mobile body overflows the boundaries proper to a human, a woman, a mammal, an individual. She is an organism who has ceased to maintain any border that might inhibit her biological development, even the parts of it that appear, from a normative human point of view, deeply unnatural. This, the story suggests, is what might come of letting borders be breached, letting infections take hold: not pollution but evolution, not sickness but glorious vitality. What the biologist helps bring about is not, after all, the end of the world, but the end of the Anthropocene; the border that finally crumbles is not merely the line between Area X and civilization, but the ideological border holding humans apart from and above the rest of the living world. Area X re-situates humans as organisms in an ecosystem—not masters, not users, but simply fellow beings engaged in the everyday work of being alive. VanderMeer’s trilogy does not shy away from the horrors of this speculative future. Yet the biologist serves as a figure of its exhilarating possibilities. Through her, the text considers how contamination is a necessary part of coexistence, exchange and adaptation the basis of survival. The threat to humanity cannot be contained, only accepted with more or less grace. If we were to allow what we think of as “our” world to be permeated by all those others we keep out, VanderMeer’s novels ask, what surprising transformations might result?

Works Cited

Masucci, Matthew. “Angry Eden: Hyperobjects, Plant Entelechy, and the Horror of Eco-Colonization in Jeff VanderMeer’s Southern Reach Trilogy.” Dark Nature: Anti-Pastoral Essays in American Literature in Culture. Ed. Richard J. Schneider. Lanham: Lexington Books, 2016. 171-184.

Onishi, Brian. “Terror and Terroir: Porous Bodies and Environmental Dangers.” Trespassing 6 (Winter 2017): 60-73.

Rogers, Mac. “The Illusion of Control.” Slate, 8 September 2014, http://www.slate.com/articles/arts/books/2014/09/jeff_vandermeer_s_southern_reach_trilogy_acceptance_annihilation_and_authority.html. Accessed 16 May 2017.

“Southern Reach Training: Fungus Safety (Protocol 3984SRT).” YouTube, uploaded by Mortimer Huckman, 19 February 2014, https://www.youtube.com/watch?v=K0sz2OnW5S4.

Tompkins, David. “Weird Ecology: On the Southern Reach Trilogy.” Los Angeles Review of Books, 30 September 2014, https://lareviewofbooks.org/article/weird-ecology-southern-reach-trilogy. Accessed 16 May 2017.

VanderMeer, Jeff. Area X: The Southern Reach Trilogy: Annihilation; Authority; Acceptance. New York: Farrar, Straus and Giroux, 2014.

VanderMeer, Jeff. “From Annihilation to Acceptance: A Writer’s Surreal Journey.” The Atlantic, 28 January 2015, https://www.theatlantic.com/entertainment/archive/2015/01/from-annihilation-to-acceptance-a-writers-surreal-journey/384884/. Accessed 16 May 2017.

Sophia Booth Magnone holds a PhD in Literature from the University of California, Santa Cruz. Her work investigates the possibilities of agency and community for nonhuman beings in speculative fiction, exploring intersections between systems of exclusion based on species difference and those based on gender, race, class, sexuality, and ability.

The Speculative Health series is edited by Matthew Wolf-Meyer.

Do Americans suddenly like Obamacare?  Contextualizing opinion polls and media narratives by Jessica Mulligan

4 Juillet 2017 - 6:01pm

“Repeal and replace” has been the rallying cry for opponents of the Affordable Care Act (ACA or Obamacare), the signature domestic policy of the Obama administration that expanded insurance coverage to 20 million people. Opposition to the ACA inspired populist social movements and helped elect Republicans to state and national office. Donald Trump tweeted hundreds of times that Obamacare was a “disaster” and promised to repeal and replace the health law. And yet, since he took office in 2017, public opinion polling shows that more Americans hold favorable views than unfavorable views of the law, reversing previous trends. Constituents have confronted members of Congress at rowdy town hall meetings and demanded that their health coverage be protected. Bewildered Republicans and health policy wonks are scratching their heads, trying to make sense of the sudden surge in support for what has been an unpopular law. Finally ready to make good on their campaign promises to repeal and replace, Republicans are met by desperate Americans, many with preexisting conditions, who fear their coverage will soon disappear.

Here, we explore this pendulum shift in public opinion poll results about the popularity of the ACA. We argue that, in fact, many pollsters and policy wonks never really understood the complicated assessments that people held of the ACA in the first place. A question about favorable or unfavorable views fails to capture the stakes of the ACA for those with and without health insurance. Poll data show that major reasons for disliking the health reform included increased costs, that it created too big a role for government, that it took the country in the “wrong direction” under President Obama, and that it did not go far enough in expanding coverage. Of course, in such polls respondents must choose among preselected options rather than being able to express their opinions in their own words. In addition, the way the results are aggregated and displayed erases the fact that many people hold multiple, overlapping, and often contradictory views simultaneously.

Based on ethnographic research with the newly and still uninsured in our forthcoming book Unequal Coverage: The Experience of Health Reform in the United Status, we found that when people criticized Obamacare, they did it for many different reasons that rarely issued from a cohesive ideological position. In addition to affordability and anti-Obama sentiments, our ethnographic research has also shown that people were dissatisfied because they felt left out of the law or felt that “others” (besides themselves) were benefiting more from the law. We also heard that deductibles were too high; that people experienced bureaucratic hurdles to enrollment; that not all doctors would accept the coverage; disagreement with the tax implications of the law; and that the website was too difficult to navigate. While some of these reasons are ideological, many of them are related to bureaucracy, price, the design of the law, and the issues with implementation. Furthermore, only a small minority of people in the United States (6%) ever actually got their health coverage through the ACA (20 million in 2016 out of a population of roughly 325 million).

As the contributors to this anthropological volume argue, the law became a flashpoint for battles over inequality, fairness, and the role of government. It also became a vehicle for generating and fanning resentment. Because the law was so overwhelmingly complex and access to health care is such a life and death issue; it evoked strong emotional reactions. Skillful politicians tapped into these emotions by bashing unpopular aspects of the law while still holding out the possibility that something better was possible (though that something was never well defined). Rather than dismissing Trump supporters as ignorant or self-destructive, as many liberal news outlets have done, we hold that critics of the ACA are just as rational, complex, and flawed as people anywhere and that if we want to know what motivates them and how they think about the world, we should probably talk to them.

We agree with anthropologist Jessica Smith that the media coverage of Trump voters was a “spectacle—one that entertained liberals by constructing an impossibly idiotic, illiberal rural electorate.” In the aftermath of the election, Trump voters have been cast as monolithic and blindly accepting of his entire project. Anthropologists would not tolerate this kind of caricaturing and lack of nuance in representations of most other peoples, but our discipline has often lagged behind in understanding interior others, like poor whites and rural residents in the United States. It is critical to understand that many white and working class rural voters are both exploited, insecure, and passed over by a changing economy and eager to latch on to narratives of racial resentment that exploited others in order to feel more secure. Furthermore, many people of color, especially in the south, were also left out of the law, some by design and others by the law’s uneven implementation. They too, have important critiques of health reform that defy simple ideological classification.

To illustrate some of the complexity in how individuals made sense of the ACA, take the case of Trina. She lives in a rural county in Florida, has a high school education, and has worked in service jobs for most of her adult life, only rarely having employer-sponsored coverage. At age 55, Trina earns $26,000 a year from her food service job at a long-term care facility. She also supports her husband, who is not currently working. Trina hadn’t had a full physical in about ten years. She mostly goes to the doctor when she has a cold that won’t go away and develops into something like bronchitis. Working with elderly patients, she doesn’t want to get anyone else sick or risk catching something from them.

Trina’s employer offers health coverage, but it is too expensive. So, when Trina heard about Obamacare plans from some of her co-workers, she got more information from a Blue Cross Blue Shield insurance broker and signed up. In 2016, she and her husband qualified for significant tax credits—their premium was $42 a month with no deductible. Despite this relatively affordable price, the family was living paycheck-to-paycheck, so that the smallest setback made insurance unaffordable. They ran into some financial problems in May of 2016 and stopped paying their premiums, so their coverage lapsed. “I could kick myself,” Trina said recounting how good her coverage was.

Trina and her husband were uninsured at the beginning of 2017 and didn’t anticipate gaining coverage again anytime soon. When she tried to sign up again in 2017, the premium for the same plan was $200 a month and her deductible was $6000. She was still getting help directly from a BCBS representative, so she might have qualified for more affordable coverage from other carriers and just not known it.

Her main concern, though, was not paying the tax penalty: “You know, now it’s up to $600 this year and that’s per person,” she said. “I don’t even think I’ll make that in income tax. So, that means that I’m going to be owing for something that I can’t afford to begin with, it’s like Catch-22.”

But then she went on to say that she was not mad that the government wanted her to have insurance: “I don’t mind the government telling me I have to have it, but you know all these prices have gone up and now you are saying you have to have it and if you don’t we’re going to fine you. You are between a rock and a hard place.”

Trina was critical of the individual mandate, not because it was an example of government overreach, but because there was no way that she could stay covered, receive a full income tax return, and continue to keep a roof over her head. It asked too much of her already strained finances to also buy health insurance when she was not accustomed to regularly using medical care and thought of herself as healthy. “Yes, I know someday I’m going to get sick and I’m not going to be able to gargle with salt water and make it go away, but you know that’s a risk—you know right now in order to keep a roof over my head. Electricity on, and stuff. I got to eat too.” Paying for insurance or eating, this was the choice that Trina faced.

So, when asked if she was optimistic or pessimistic after the election, she said she was optimistic. “I’m hoping it gets better. I’m feeling positive, so I know we are going for the better.” She was a Trump supporter and though she didn’t think she would gain access to affordable insurance coverage anytime soon, she did think that he would be able to get rid of the individual mandate and then at least she would have a little bit of extra money in her pocket.

At the end of the interview, Trina said she would like to see the U.S adopt a health care system like they have in Canada: “Healthcare available to all. I realize that’s going to raise the prices of other things, but your health is protected.”

*****

What would a poll would have told us about Trina’s assessment of the Affordable Care Act? Ethnographic interviewing shows that she has a complex, multifaceted, and rational position. She is against the ACA to the extent that the coverage was not affordable and she was penalized for being uninsured when she felt she couldn’t really afford the coverage. She is a Trump supporter, but not wildly against Obamacare. Her views were strongly shaped by her economic location and the real trade-offs she must make to cover her basic needs. She saw health insurance as a luxury just out of her reach. Nonetheless, she desired greater access to care for everyone and was willing to pay more for other things to have it. Trina, a Trump supporter, was actually in favor of a single-payer system similar to Canada’s. The static and binary representation of opinion that political poling relies upon wouldn’t tell us much about how Trina understands health care.

*****

Of course, Trina doesn’t represent everyone’s views. In the book we draw on hundreds of interviews to tease out the complicated assessments of the ACA held by those the law was supposed to help. This includes people who were excited to be covered for the first time and attended outreach events or utilized the website, only to find out they did not fit the criteria for Marketplace assistance and fell within the coverage gap.

Carlos is a 45-year old married father of two, who lives in a South Texas border county where almost one in three persons remain without health insurance, even after the ACA. On a Saturday morning, he and his family attended a health insurance outreach event at a local community health center, complete with games for the kids and a raffle to attract people from the surrounding community. After waiting in line to speak with an enrollment specialist, he discovered that he earns too little to qualify for insurance subsidies. He was confused by this, since he assumed the subsidy was designed for those who need a little assistance. What remained unstated was that Republicans in Texas had just blocked Medicaid for poor and working adults in their state.  In another state, he and his wife would have obtained coverage that Saturday morning.

Despite a strong desire for health care coverage – and a willingness to pay for the opportunity – Carlos is one of the many who have been excluded by design. They have been effectively shut out, due solely to the state in which they live. Texas is one of 19 states that has remained in opposition to the ACA, with state lawmakers rejecting the Medicaid expansion and leaving millions of low-income working adults without a coverage option. These individuals became caught in the “coverage gap,” in which their incomes exceeded their states’ Medicaid eligibility criteria but were too low to qualify them for subsidies to assist in purchasing insurance through the exchanges. As a result, a large portion of the population in some states has remained unaffected by the progress made through the ACA, because they were among the working poor making less than 100% of the federal poverty level. For people like Carlos, the ACA both reinforced existing and produced new forms of regional, economic, and ethnic inequality.

*****

The examples of Trina and Carlos show how necessary a grounded approach to understanding policy is, and why anthropologists should be at the table. Assessing simply a favorable or unfavorable view of the law prevents us from learning from the experiences of those the ACA was supposed to help. These are the very people who can provide nuanced evaluations of where the law worked and where it went wrong, if only we were willing to listen. People may not have been happy with every aspect of the ACA (like paying a fine, cumbersome enrollment processes, and coverage that is still too expensive), but they did want health coverage and most people do seem to think that the government needs to play a role in making that possible (despite what ideologues on the Right say and despite the far more limited role for government in the AHCA).

Had we been listening all along to how the ACA was impacting people’s lives, we might have been less surprised when attacking the law bolstered Trump’s appeal. In our ethnographic work we’ve learned at least three things about how people make sense of and evaluate the ACA. First, favorable or unfavorable isn’t nearly nuanced enough of a frame for understanding the Affordable Care Act’s achievements and failures. The people we spoke to had complex assessments and pointed to things they liked about the law as well as the areas in which it fell short. Second, we need to set aside simplistic narratives about critics of the ACA, such as that it is simply a racist reaction to President Obama or that rural people are too ignorant to understand that the law actually helps them. The ACA was a complex law that impacted people’s lives in contradictory ways. Third and finally, the law elicited feelings of inclusion and exclusion as many longed for the security of health insurance, yet still found themselves uninsured. As repeal looks more imminent, it makes sense that people’s complex assessments and strong feelings about inclusion and exclusion are bubbling to the surface.

 

Jessica Mulligan is Associate Professor of Health Policy and Management at Providence College. Her current research explores insurance, financial security, and health reform from the perspective of the newly insured and those who continue to lack coverage. She is co-editor of Unequal Coverage: The Experience of Health Care Reform in the United States (NYU Press, fall 2017). Her first book, Unmanageable Care: An Ethnography of Health Care Privatization in Puerto Rico was published by NYU Press in 2014.

Heide Castañeda is Associate Professor in the Department of Anthropology at the University of South Florida. She received a PhD in Anthropology from the University of Arizona (2007), MPH from the University of Texas (2002), and MA in Anthropology from the University of Texas at San Antonio (2000). Her primary research areas include migrant health, health policy, undocumented/unauthorized migration, and constructs of citizenship.

Identity politics, partisanship and healthcare by Maria Cecilia Dedios

2 Juillet 2017 - 5:18pm

The problem of intense polarization in politics -and in society more generally- has been on the spotlight for several months now. In the past couple of weeks, we’ve been bombarded by headlines, arguments, and op-eds that show the extent to which this polarization is impacting something that should not –at least in principle- be a matter of partisanship: The provision of healthcare for the American people. How did we get here? This month the web round-up focuses on some attempts at answering this question in various online outlets.

 

To begin with, there seems to be very different understandings of health along party lines, either as a right or as a commodity. One side understands health care similar to a right, arguing for equity in access to health care based on the idea of a societal obligation towards those who can’t afford access to health care, arguing that health care access represents a way to provide equal opportunities to everyone. The other side sees health care as a commodity, something that each person can freely decide whether to acquire or not. Also, this argument goes, the government should and could not pick up the bill when it comes to cover health care for all. That, the right argues, would be a government overstep with no constitutional basis.

 

Things are further complicated by identity politics, which is one of the most complex issues to deal with in relation to political polarization. Because the discussion becomes about who you are, and things are framed in an “us vs. them” type of mentality, little room is left for much need sensible debates on actual policies and bills on healthcare. No one denies that the healthcare system needs improvement, debates on how to best tackle its deficiencies are not only important but necessary. But trying to repeal the health law and replace it later does not seem to be the answer; such an idea exemplifies the extent to which this has become a matter of political win or lose.

 

Importantly, identity politics and polarization also mean that politicians can -in practice- mobilize supporters without being forced to discuss or account for their actions. It seems counterintuitive that Republicans would push for a new healthcare bill even though twenty two fewer million Americans would lose insurance in ten years’ time, compared with the current health bill. Further, it is precisely the president’s  supporters who suffer the most by this change. Therefore, the GOP seems to be counting on the tremendous power of identity politics to gain and maintain support, with the goal of reducing the fiscal cost of the health bill to be able to cut taxes. This goal, which has been made explicit, also merits discussion and debate.

 

Social scientists are in the best position to understand and inform what is happening with the healthcare bill. Economists tend to assume that people will make rational decisions that maximize their well-being. From this position they also emphasize the trade-offs involved in any health system decision; some examples of such trade-offs include the cost of innovation – creating live saving health technology vs. the access barriers this very same innovation tends to create (because it is very costly), or thinking in terms of limited resources, the tradeoff that exists between coverage and quality for any health system. Social psychologists emphasize the central motivational force of social identity and its power to shape human behavior. The last election cycle showed that identity can matter more than other wellbeing considerations, including economic wealth, but little has been said about how this motivational force should be used or channeled. Furthermore, it is far from established that ethnicity is necessarily the “natural” or even the most powerful source of identity. Medical anthropology can provide insights to inform the current healthcare system debate. Among those, conceptual tools and a large body of evidence that informs how and what value is assigned to health in different local worlds, and the power struggles that define who is deserving of health and healthcare coverage. It seems more important than ever to engage people within and outside the discipline in these debates.

In the Journals – June 2017, part two by Aaron Seaman

1 Juillet 2017 - 7:26pm

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

The presentation of mental disturbance in modern Scottish literature (open access)

Allan Beveridge

The subject of madness features throughout world literature, but the literature of modern Scotland appears to be especially preoccupied with it. This paper gives a brief overview of the ways in which madness is represented in modern Scottish literature and the different artistic functions it performs. It will consider the subject on a thematic basis. First, there are accounts by writers who have experienced mental turmoil themselves. Second, there is the theme of the ‘Narrative of personal crisis’ which depicts in fictional form an individual’s journey through madness. Third, there is the theme of the ‘Gothic or divided selves’. The fourth theme is that of the ‘Female voice’ and the last is that of ‘Outsiders and holy fools’, whose existence is to unsettle the beliefs of a wider society.

‘Trapped in the labyrinth’: exploring mental illness through devised theatrical performance

Paul Patterson and Persephone Sextou

Mental health difficulties remain a major source of burden and distress for individuals, families, health and social care providers with stigma a key target for educational campaigns attempting to improve care pathways and access to support. Stigma is a multifaceted concept having a range of drivers including shame and is thought to act as a barrier to successful help seeking and engagement with support services. The current paper explores some of the salient themes that emerged from a British university drama project on the impact of symptoms and behaviours associated with a severe mental health condition on a young couple’s relationship and reflects on the opportunities for connection with an audience provided by the medium and experience. It is suggested that enabling the impact of mental ill health to be explored in a protected environment such as theatre can allow for reflection and empathy to develop, with potential for positive impact on awareness understanding and stigma. Elements of the drama setting and narrative are explored, and analogies are made with the emerging literature on post-traumatic growth.

Heritage and Stigma. Co-producing and communicating the histories of mental health and learning disability (open access)

Rob Ellis

University engagement with mental health services has traditionally been informed by the vocational and pedagogical links between the two sectors. However, a growth in the interest in public history and in the history of mental healthcare has offered new opportunities for those in the humanities to engage new audiences and to challenge perceptions about care in the past. The introduction of the ‘impact agenda’ and related funding streams has further encouraged academics to contribute to historical debates, and to those concerning current services. One such example of this is the Arts and Humanities Research Council funded Heritage and Stigma project at the University of Huddersfield, which was conceived to support mental health and learning disability charities in the exploration and dissemination of their own histories. Using this project as a case study, this paper will draw on primary source material to reflect on the opportunities and challenges of working in partnership with such groups. In particular, it will consider the need to address issues of stigma and exclusion in tandem with a critical understanding of the moves to ‘community care’ instigated by landmark legislation in the form of the 1959 Mental Health Act. Overall, it provides evidence of an inclusive, coproductive model of design and highlights the positive contribution to communicating mental health made by those based in the humanities.

‘She sits all day in the attitude depicted in the photo’: photography and the psychiatric patient in the late nineteenth century

Katherine D.B. Rawling

The links between mental state and art in all its various forms and media have long been of interest to historians, critics, artists, patients and doctors. Photographs of patients constitute an extensive but largely unexplored archive that can be used to recover patient experience in the late nineteenth and early twentieth century. The camera and the photograph became tools to communicate information about mental ill health between doctors, their patients and their colleagues. They were published in textbooks and journals, exhibited, exchanged and pasted into medical case books alongside case notes. But they were also used by patients to communicate their own experiences, identity and sense of self. This article uses published and case book photographs from c. 1885–1910 to examine the networks of communication between different stakeholders and discourses.

A crisis of meaning: can ‘schizophrenia’ survive in the 21st century?

Jerry Tew

Both within clinical and wider societal discourses, the term ‘schizophrenia’ has achieved considerable potency as a signifier, privileging particular conceptual frames for understanding and responding to mental distress. However, its status has been subject to instability, as it has lacked indisputable biological correlates that would anchor its place within the canon of medical diagnosis. Informed by a semiotic perspective, this paper focuses on its recent history: how ‘schizophrenia’ has been claimed, appropriated and contested—and how this connects with its earlier history of signification. It also explores how the dominance of this signifier has influenced the ways in which people with the diagnosis may find themselves constructed in their interactions with professionals, family and wider society, and hence how they may come to see themselves. It is argued that, from a point in the 1990s when ‘schizophrenia’ had achieved an almost iconic status, the term is now subject to greater instability, with concerns and challenges being raised from both within and outside psychiatry. On the one hand, this uncertainty has triggered a ‘calls to arms’ from those within the psychiatric establishment who see diagnoses such as ‘schizophrenia’ as crucial to their professional identity and status. On the other hand, this has created spaces for new conversations and alliances between elements within neurology, psychiatry, social work and other professions, and between these and service users. Some of these conversations are casting doubt on the validity and utility of ‘schizophrenia’ as a construct, and are beginning to posit alternative regimes of signification.

If psychosis were cancer: a speculative comparison (open access)

Michael Larkin, Zoë Boden, and Elizabeth Newton

Recently, health policy in the UK has begun to engage with the concept of ‘parity of esteem’ between physical and mental healthcare. This has led one recent initiative to improve service provision for first episode psychosis, which aims to bring it into line with some of the principles underpinning good practice in cancer care. In this paper, we consider some of the metaphorical consequences of likening psychosis to cancer. While we find the comparison unhelpful for clinical purposes, we argue that it can be a helpful lens through which to examine service provision for psychosis in young people. Through this lens, specialist community-based services would appear to compare reasonably well. Inpatient care for young people with psychosis, on the other hand, suffers very badly by comparison with inpatient facilities for teenage cancer care. We note some of the many positive features of inpatient cancer care for young adults, and—drawing upon previous research on inpatient psychiatric care—observe that many of these are usually absent from mental health facilities. We conclude that this metaphor may be a helpful rhetorical device for communicating the lack of ‘parity of esteem’ between mental and physical healthcare. This inequity must be made visible in health policy, in commissioning, and in service provision.

Listen and learn: engaging young people, their families and schools in early intervention research (open access)

Charlotte Connor on behalf of Collaboration for Leadership in Applied Health Research and Care West Midlands (CLAHRC-WM) Youth Mental Health

Recent policy guidelines highlight the importance of increasing the identification of young people at risk of developing mental health problems in order to prevent their transition to long-term problems, avoid crisis and remove the need for care through specialist mental health services or hospitalisation. Early awareness of the often insidious behavioural and cognitive changes associated with deteriorating mental well-being, however, is difficult, but it is vital if young people, their families and those who work with them are to be fully equipped with the skills to aid early help-seeking. Our early intervention research continues to highlight the necessity of engaging with and listening to the voices of young people, families and those who work with children and young people, in developing greater understanding of why some young people may be more at risk in terms of their mental health, and to provide children and young people with the best mental health support we can. Collaborative working with young people, their families and those who work with them has been an essential dimension of our youth mental health research in Birmingham, UK, enabling us to listen to the personal narratives of those with lived experience and to work alongside them. This paper highlights some of our key studies and how we have endeavoured to make intra-agency working successful at each stage of the research process through increasing use of digital and youth-informed resources to engage young people: a methodology which continues to inform, guide and develop our early intervention research and implementation.

Identity, law, policy and Communicating Mental Health

Peter Bartlett

This paper reflects on the special edition, Communicating Mental Health, from the perspective of a legal academic with an interest in the service user rights and in United Nations Convention on the Rights of Persons with Disabilities. It is argued that the special edition demonstrates the breadth of the medical model but also that the medical model remains firmly in place in academic understanding of mental disability. The paper questions what this means for identity formation of people with lived experience of mental disability and how we should conceptualise mental disability in the future.

 

New Genetics and Society

The politics of biomedical platforms: controversy around the molecularization of cytogenetics in prenatal diagnosis

Mauro Turrini

The introduction of a new technique based on molecular cytogenetics (the comparative genomic hybridization microarray, Chromosomal Micro-Array) in prenatal diagnosis is here used as an occasion to politically elaborate Cambrosio’s and Keating’s framework of “biomedical platform.” The uncertainty generated by molecularization leaves the field open for two different modalities of implementation: using targeted microarrays to completely replace traditional karyotyping versus using genome-wide analysis of chromosomal anomalies only in at-risk pregnancies. Retracing the global scientific controversy on this issue and, particularly, the heated debate that has taken place in Italy, the paper intends to analyze the rise of a biomedical platform in prenatal diagnosis as a multi-layered phenomenon. Diverging epistemological strategies to deal with uncertainty, professional interests, relationship between medical practice, innovation and research, and patient subjectivities interact with each other, by shedding light on the inherent political dimension in the epistemological and material of an emerging biomedical platform.

“Participating means accepting”: debating and contesting synthetic biology

Morgan Meyer

This article analyses opposition to public debates. In doing so, the article builds upon the tradition of analyzing controversies by symmetrically describing the advocates and the opponents of public debates. First, the public debates on synthetic biology will be placed in their wider political and institutional context. The call for a “serene” debate by the French public authorities will be retraced and its genealogy vis-à-vis previous controversies (i.e. on genetically modified organisms (GMOs) and nanotechnology) will be elucidated. The article then describes how the group Pièces et main d’œuvre (PMO) obstructed a public debate on synthetic biology, an obstruction that will be analyzed by mobilizing and extending the notion of divisible versus indivisible conflicts. But the article will also move beyond the symmetrical analysis of a controversy by discussing one of the criticisms raised by PMO, that some researchers are “sociologists of acceptability.” The notions of divisibility, indivisibility and what I call “inversibility” will be used to reflect upon the positionality of social scientists and to offer a constructive view for a sociology of acceptability.

Pride and concern: differences between sperm and egg donors with respect to responsibility for their donor-conceived offspring

Margaret K. Nelson and Rosanna Hertz

Comparative research on sperm donors and egg donors in the United States suggests that while men view themselves as fathers of their offspring, women do not view themselves as mothers. Comparative research suggests as well that men and women are equally interested in contact with offspring, equally curious about them, and equally likely to hold themselves responsible for those offspring. This paper re-examines these differences and similarities using data from a survey of donors who registered on a third-party website with hopes of having some contact with their genetic offspring. Our findings suggest that women and men offer similar reasons for donating and similar assessments of the experience. Yet, the two groups have developed quite different patterns of interest in their offspring. The men create a sense of “prideful lineage” rather than fatherhood. The women create a pattern of feeling that involves “concerned responsibility” rather than motherhood.

Spitting images: remaking saliva as a promissory substance

Mette Kragh-Furbo and Richard Tutton

Of the bodily substances in which STS scholars, anthropologists, sociologists, and medical historians have been interested, saliva has arguably been overlooked. Yet, in the past 20 years, saliva has become important to the development of consumer genetic tests. Historically, expectoration has been associated with the spread of disease and social indecency, but when the personal genomics company 23andMe began hosting spit parties in 2007, the act of spitting was transformed into an act of self-empowerment through which the individual gained new health information and saliva turned into a new biological source for measuring health and illness. Attending to saliva’s social meanings over time, and by analyzing 23andMe “unboxing” YouTube videos, we argue that saliva has become a promissory substance whose place is no longer reserved only for the inner spaces of the body, but circulates outside the body, forming an important part of the contemporary bioeconomy.

 

Science as Culture

Problematisations of Complexity: On the Notion and Production of Diverse Complexities in Healthcare Interventions and Evaluations (open access)

Tineke Broer, Roland Bal, and Martyn Pickersgill

Within the literature on the evaluation of health (policy) interventions, complexity is a much-debated issue. In particular, many claim that so-called ‘complex interventions’ pose different challenges to evaluation studies than apparently ‘simple interventions’ do. Distinct ways of doing evaluation entail particular ontologies and epistemologies of complexity. They differ in terms of whether they define complexity as a quantitative trait of interventions, whether they see evaluation as part of or outside the intervention, and whether complexity can be regarded as an emergent property of the intervention and its evaluation. In practice, evaluators and commissioners of large health care improvement programmes rely on different, sometimes contradictory, repertoires about what it means to conduct a ‘good’ evaluation. This is an ongoing matter negotiated between and among commissioners, researchers, and—sometimes—programme managers. In particular, notions of evaluability, usefulness and distance/independence are problematised in different ways and with diverse consequences, which, in turn, produce other notions and layers of complexity such as temporal, institutional and affective complexities. When (social science) researchers claim that one method or another is better able to grasp complexity, they elide the issue that any methodological choice emphasises some complexities and lets others fade into the background. Analysing the practicalities and emotions involved in evaluation studies opens up the notion of complexity to analytical scrutiny, and suggests a basis for co-theorising between biomedical, public health and social scientists (including Science and Technology Studies scholars).

Contesting a Pandemic: The WHO and the Council of Europe

Sudeepa Abeysinghe

Contemporary risks are often understood as fundamentally uncertain. This uncertain status can be mobilized within political debates surrounding risks. Such a challenge serves to destabilize scientific claims. The World Health Organization’s (WHO) management of the 2009/10 spread of the H1N1 virus became a site of one such contestation. Debate within the Council of Europe particularly served to criticize the action of the WHO. This resulted in a definitional and policy contestation between the two institutions. The WHO accounted for its actions through allusions to (seemingly stable) scientific facts, using epidemiological evidence of influenza and its management based on normal science. In contrast, in criticizing public expenditure and panic, the Council of Europe critics problematized the stability of the science employed by the WHO. This included fundamental aspects of scientific knowledge such as the measurability of morbidity and mortality caused by H1N1 and the effect of vaccination against influenza viruses. This criticism relied upon the ability to destabilize the WHO’s scientific knowledge, a process made possible through understandings of the uncertain nature of the science of risk (post-normal science). The case study illustrates that potential for previous-established and seemingly stable scientific facts to become destabilized and problematized during contestations of risk management.

The Genealogy of “Empirical Post-structuralist” STS, Retold in Two Conjunctures: The Legacy of Hegel and Althusser

Johan Söderberg

Recent discussions in science and technology studies (STS) about the risks of science and technology have led to political economy occupying centre stage. Closely related to political economy as a field of investigation are a number of overarching concepts, such as class, capitalism and interest. However, reliance on such concepts is rejected in post-Actor Network Theory STS. This stand-off over overarching categories can be traced back to two conjuntures in the genealogy of STS. First, the influence of Hegel and his concept of “totality”; and second, the influence from anti-hegelian French epistemology with its celebration of the opposite concept, that of “multiplicity”.

Autistic Heterogeneity: Linking Uncertainties and Indeterminacies (open access)

Gregory Hollin

Autism is a highly uncertain entity and little is said about it with any degree of certainty. Scientists must, and do, work through these uncertainties in the course of their work. Scientists explain uncertainty in autism research through discussion of epistemological uncertainties which suggest that diverse methods and techniques make results hard to reconcile, ontological uncertainties which suggest doubt over taxonomic coherence, but also through reference to autism’s indeterminacy which suggests that the condition is inherently heterogeneous. Indeed, indeterminacy takes two forms—an inter-personal form which suggests that there are fundamental differences between individuals with autism and an intra-personal form which suggests that no one factor is able to explain all features of autism within a given individual. What is apparent in the case of autism is that scientists put uncertainty and indeterminacy into discussion with one another and, rather than a well-policed epistemic-ontic boundary, there is a movement between, and an entwinement of, the two. Understanding scientists’ dialogue concerning uncertainty and indeterminacy is of importance for understanding autism and autistic heterogeneity but also for understanding uncertainty and ‘uncertainty work’ within science more generally.

From Standardization to Adaptation: Clinical Trials and the Moral Economy of Anticipation

Catherine M. Montgomery

Hailed as the gold standard, the randomized controlled trial (RCT) occupies a hegemonic position at the top of evidence-based medicine’s hierarchy of knowledge. It is testament to the methodology’s capacity for standardization that it can so readily be spoken of in the singular: the RCT. Under what conditions, then, is it possible to speak of change in the gold standard? Since the 1950s, alternative versions of the RCT have been advocated for under the banner of ‘adaptive design’. Adaptive designs allow investigators to make pre-planned changes to a trial on the basis of accruing information while the experiment is ongoing. Initially a niche topic of methodological debate among biostatisticians, the approach is becoming widespread in mainstream drug development. A genealogical analysis exposes the discursive moves used to justify and popularize adaptation, from a focus on patient well-being and the greater good in the 1960s and 1970s, to efficiency and virtualism in the 1990s and 2000s. Changing discourses of time and patienthood have facilitated a move away from standardization as the singular logic of trials towards an appreciation of flexibility, undergirded by probabilistic methodologies. Adams et al.’s [(2009). Anticipation: Technoscience, life, affect, temporality, Subjectivity, 28, pp. 246–265] conceptual framework of anticipation illuminates this evolving moral economy of medical research, in which modes of knowledge production which claim to know the future are supplanting the traditional certainties of fixed and standardized experimental designs. Predictable uncertainty is the currency of this emerging economy, which capitalizes on computer simulation and ever more sophisticated tools of prediction to leverage credibility.

 

Social Science and Medicine

“I started working because I was hungry”: The consequences of food insecurity for children’s well-being in rural Ethiopia

Virginia Morrow, Yisak Tafere, Nardos Chuta, and Ina Zharkevich

Food insecurity, the state of being without reliable access to a sufficient quantity of safe, nutritious food, is a persistent problem in rural Ethiopia. However, little qualitative research has explored how food insecurity affects children over time, from their point of view. What are the effects of economic ‘shocks’ such as illness, death, loss of livestock, drought and inflation on availability of food, and children’s well-being? To what extent do social protection schemes (in this case, the Productive Safety Net Programme) mitigate the long-term effects of food insecurity for children? The paper uses a life-course approach, drawing on analysis of four rounds of qualitative longitudinal research conducted in 2007, 2008, 2011 and 2014, with eight case study children, as part of Young Lives, an ongoing cohort study. Children’s descriptions of the importance of food and a varied diet (dietary diversity) in everyday life were expressed in a range of qualitative methods, including interviews, group discussions and creative methods. The paper suggests that while the overall picture of food security in Ethiopia has improved in the past decade, for the poorest rural families, food insecurity remains a major factor influencing decisions about a range of matters – children’s time allocation, whether to continue in school, whether to migrate for work, and whether they marry. The paper argues that experiences of food insecurity need to be understood holistically, in relation to other aspects of children’s lives, at differing stages of the life-course during childhood. The paper concludes that nutritional support beyond early childhood needs to be a focus of policy and programming.

Performing boundary work: The emergence of a new practice in a hybrid operating room

Kajsa Lindberg, Lars Walter, and Elena Raviola

This paper addresses the processes of boundary work, in relation to the introduction of new technology, unfolding during the emergence of new medical practices. Inspired by Gieryn’s fluid and practical view of boundaries and boundary work, and by Actor-Network Theory’s description of scripting processes, we study the processes of negotiating and (re-)constructing boundaries in order to reveal both the interactions between different kinds of boundary work and their situatedness in the context of the emerging practice. We conducted a longitudinal and qualitative study of a generic Hybrid Operating Room at a Swedish university hospital, where sophisticated imaging devices are combined with open surgery procedures in a single room; consequently, medical requirements regarding radiology, surgery and anesthesia, as well as the specificities of the new technology, all need to be met at the same time. The study shows how the visibility of boundaries is a result of as well as a condition for boundary work, how boundary work is a dynamic and iterative process, and how it unfolds in a recursive relationship between practice and boundaries.

Health policy in the concertación era (1990–2010): Reforms the chilean way

María Soledad Martinez-Gutierrez, and Cristóbal Cuadrado

The Chilean health system has experienced important transformations in the last decades with a neoliberal turn to privatization of the health insurance and healthcare market since the Pinochet reforms of the 1980s. During 20 years of center-left political coalition governments several reforms were attempted to regulate and reform such markets. This paper analyzes regulatory policies for the private health insurance and health care delivery market, adopted during the 1990–2010 period. A framework of variation in market types developed by Gingrich is adopted as analytical perspective. The set of policies advanced in this period could be expected to shift the responsibility of access to care from individuals to the collective and give control to the State or the consumers vis a vis producers. Nevertheless, the effect of the implemented reforms has been mixed. Regulations on private health insurers were ineffective in terms of shifting power to the consumer or the state. In contrast, the healthcare delivery market showed a trend of increasing payers’ and consumers’ control and the set of implemented reforms partially steered the market toward collective responsibility of access by creating a submarket of guaranteed services (AUGE) with lower copayments and fully funded services. Emerging unintended consequences of the adopted policies and potential explanations are discussed. In sum, attempts to use regulation to improve the collective dimension of the Chilean health system has enabled some progress, but several challenges had persisted.

Culture and depression in global mental health: An ecosocial approach to the phenomenology of psychiatric disorders

Laurence J. Kirmayer, Ana Gomez-Carrillo, and Samuel Veissière

Depression is a major focus of concern in global mental health, with epidemiological surveys indicating high prevalence rates worldwide (Ferrari et al., 2013a). Estimates of the global burden of depression in terms of disability, quality of life, and economic impact have been used to argue for scaling up the detection and treatment of depression as a public health and development priority in low and middle-income countries (Chisholm et al., 2016; Patel, 2017). These projections, however, are based on limited data and make many assumptions about the generalizability of findings across populations. While epidemiological research suggests there is substantial cross-cultural variation in the prevalence and symptomatology of depression (Ferrari et al., 2013b; Kessler and Bromet, 2013), there is evidence that a syndrome similar to major depressive disorder can be identified across diverse cultural contexts (Kleinman and Good, 1985; Kirmayer and Jarvis, 2006; Steel et al., 2014).

In a useful contribution, Haroz and colleagues (Haroz et al., 2017) reviewed the qualitative literature on cultural variations in depression to gauge the extent to which current diagnostic criteria fit the experience of people in diverse contexts. They found significant cultural variation and call for an expanded research program to explore the meaning and significance of these cultural differences for our understanding of mental health. This is crucial for current efforts to address global inequities in mental health and to make sense of claims of a global “epidemic” of depression (Baxter et al., 2014).

In this commentary, we examine the methods and findings of Haroz and colleagues’ study and discuss implications for future research on depression and the development of interventions in global mental health.

Patient engagement at the margins: Health care providers’ assessments of engagement and the structural determinants of health in the safety-net

Mark D. Fleming, Janet K. Shim, Irene H. Yen, Ariana Thompson-Lastad, Sara Rubin, Meredith Van Natta, and Nancy J. Burke

Increasing “patient engagement” has become a priority for health care organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across health care settings, little is known about how health care providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how health care providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how health care providers describe engagement for high cost patients—the “super-utilizers” of the health care system—who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The health care providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.

Sadness or depression: Making sense of low mood and the medicalization of everyday life

Christian Bröer and Broos Besseling

This research focusses on low mood as a generic category in everyday social interactions, outside the clinical realm and among non-patients. We examine if and how a clinical depression label and treatment are employed when low mood occurs in everyday life, which enables us to analyze the extent and content of medicalization and brings to the fore the interactional mechanisms and cultural concerns that potentially drive medicalization. The analysis is based on 316 observations of everyday life in the Netherlands. We observed and recorded interactions in which low mood was spontaneously expressed.

Our paper shows that the clinical depression label resonates widely even if low mood is not fully medicalized. People de-medicalize low mood, and low mood can be un-medicalized. Our analysis thus suggests that dominance is not achieved, which nuances Horwitz and Wakefield’s claim that the clinical category of depression has come to encompass all forms of low mood. Moreover, uncertainties about the meaning of low mood and about the depression label remain pragmatic concerns of everyday life.

The cultural norm of happiness and active citizenship are very prominent in everyday life across medicalized and un-medicalized interactions. These norms thus seem to be a necessary but insufficient condition for medicalization. While pragmatic concerns do not seem to trigger medicalization either, one specific type of concern is consistently related to medicalization: relational conflicts.

In sum, the cultural construction of low mood is not dominated by a single medical approach; however, it mirrors the diversity and uncertainties within and around the medical field.

Controversies about cervical cancer screening: A qualitative study of Roma women’s (non)participation in cervical cancer screening in Romania (open access)

Trude Andreassen, Elisabete Weiderpass, Florian Nicula, Ofelia Suteu, Andreea Itu, Minodora Bumbu, Aida Tincu, Giske Ursin, and Kåre Moen

Romania has Europe’s highest incidence and mortality of cervical cancer. While a free national cervical cancer-screening programme has been in operation since 2012, participation in the programme is low, particularly in minority populations. The aim of this study was to explore Roma women’s (non)participation in the programme from women’s own perspectives and those of healthcare providers and policy makers. We carried out fieldwork for a period of 125 days in 2015/16 involving 144 study participants in Cluj and Bucharest counties. Fieldwork entailed participant observation, qualitative interviewing and focus group discussions. A striking finding was that screening providers and Roma women had highly different takes on the national screening programme. We identified four fundamental questions about which there was considerable disagreement between them: whether a free national screening programme existed in the first place, whether Roma women were meant to be included in the programme if it did, whether Roma women wanted to take part in screening, and to what degree screening participation would really benefit women’s health. On the background of insights from actor-network theory, the article discusses to what degree the programme could be said to speak to the interest of its intended Roma public, and considers the controversies in light of the literature on patient centred care and user involvement in health care. The paper contributes to the understanding of the health and health-related circumstances of the largest minority in Europe. It also problematizes the use of the concept of “barriers” in research into participation in cancer screening, and exemplifies how user involvement can potentially help transform and improve screening programmes.

“How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable

Kath Maguire and Nicky Britten

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of ‘representation’ and the ways the concept is used by people serving as ‘patient’ or ‘lay’ representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows’ acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.

Finding joy in poor health: The leisure-scapes of chronic illness

Julia McQuoid

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness.

 

Social Studies of Science

SPECIAL ISSUE: Breaking Scientific Networks

A long history of breakdowns: A historiographical review

Dániel Margócsy

The introduction to this special issue argues that network breakdowns play an important and unacknowledged role in the shaping and emergence of scientific knowledge. It focuses on transnational scientific networks from the early modern Republic of Letters to 21st-century globalized science. It attempts to unite the disparate historiography of the early modern Republic of Letters, the literature on 20th-century globalization, and the scholarship on Actor-Network Theory. We can perceive two, seemingly contradictory, changes to scientific networks over the past four hundred years. At the level of individuals, networks have become increasing fragile, as developments in communication and transportation technologies, and the emergence of regimes of standardization and instrumentation, have made it easier both to create new constellations of people and materials, and to replace and rearrange them. But at the level of institutions, collaborations have become much more extensive and long-lived, with single projects routinely outlasting even the arc of a full scientific career. In the modern world, the strength of institutions and macro-networks often relies on ideological regimes of standardization and instrumentation that can flexibly replace elements and individuals at will.

A fragile assemblage: Mutant bird flu and the limits of risk assessment

Andrew Lakoff

This paper examines the recent public controversy sparked by the laboratory creation of a strain of highly pathogenic avian influenza transmissible among mammals. The contours of the controversy can be understood by tracking the assemblage of actors, institutions and devices gathered together in response to the governmental problem of how to manage emerging diseases. The grouping is tenuously held together by a shared commitment to the project of ‘pandemic preparedness’. However, as the controversy unfolds, it becomes clear that the main actors involved do not share a common understanding of the problem to be addressed by pandemic preparedness, and the assemblage threatens to decompose. At the center of the dispute is the question of how to assess the risks and benefits of research in a field characterized by urgency and uncertainty.

The missing, the martyred and the disappeared: Global networks, technical intensification and the end of human rights genetics

Lindsay A. Smith

In 1984, a group of Argentine students, trained by US academics, formed the Argentine Forensic Anthropology Team to apply the latest scientific techniques to the excavation of mass graves and identification of the dead, and to work toward transitional justice. This inaugurated a new era in global forensic science, as groups of scientists in the Global South worked outside of and often against local governments to document war crimes in post-conflict settings. After 2001, however, with the inauguration of the war on terror following the September 11th attacks on the World Trade Center in New York, global forensic science was again remade through US and European investment to increase preparedness in the face of potential terrorist attacks. In this paper, I trace this shift from human rights to humanitarian forensics through a focus on three moments in the history of post-conflict identification science. Through a close attention to the material semiotic networks of forensic science in post-conflict settings, I examine the shifting ground between non-governmental human rights forensics and an emerging security- and disaster-focused identification grounded in global law enforcement. I argue that these transformations are aligned with a scientific shift towards mechanized, routinized, and corporate-owned DNA identification and a legal privileging of the right to truth circumscribed by narrow articulations of kinship and the body.

 

Sociology of Health and Illness

A day in the life of a Ménière’s patient: understanding the lived experiences and mental health impacts of Ménière’s disease

Sarah L. Bell, Jessica Tyrrell, and Cassandra Phoenix

Concepts of social practice are increasingly being used to understand experiences of everyday life, particularly in relation to consumption and healthy lifestyles. This article builds on this in the context of lives disrupted and reshaped by chronic illness. It uses social practice theory to examine the lived experiences of individuals with Ménière’s disease; a long-term progressive vestibular disorder, defined by episodes of severe and debilitating vertigo, aural fullness, tinnitus and sensorineural hearing loss. Drawing on the findings of 20 in-depth narrative interviews with Ménière’s patients, and eight spousal/partner interviews, we explore the impacts of the condition on sensory, temporal, spatial and social dimensions of the body. In doing so, we highlight the intensely embodied sensory and emotional work required to maintain connections between the ‘competences’, ‘materials’ and ‘meanings’ that constitute and sustain the performance of both mundane and meaningful social practices over time. As connections between these elements of social practice are disrupted during more active phases of the condition, affected individuals may be defected from old practices and recruited to new ones, often requiring both time and social support to find meaning or pleasure in these alternative ways of being in the world.

Might constraint be compatible with care? Home care as a situational ethics

Antoine Hennion and Pierre A. Vidal-Naquet

Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people’s needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally-based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people’s homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing ‘constraint in practice’: a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear-cut distinction between technical gestures and moral values. Having outlined the characters of such a ‘situational ethics’, the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to ‘maintaining the trouble’ in care practices.

The concept of medicalisation reassessed

Joan Busfield

Medicalisation has been an important concept in sociological discussions of medicine since its adoption by medical sociologists in the early 1970s. Yet it has been criticised by some sociologists, in part because it seems too negative about medicine, and modified or replaced by others with concepts deemed more relevant like biomedicalisation and pharmaceuticalisation. My aim in this paper is to reassess the concept and consider whether it still has value in exploring significant aspects of the role of medicine in present-day society. I start with an archaeology of the concept’s development and the different ways it has been used. This covers some familiar ground but is essential to the main task: examining criticisms of the concept and assessing its value. I conclude that the concept continues to have a crucial and productive place in sociological analyses of medicine and that the process of medicalisation is still a key feature of late-modern social life and culture.

The concept of medicalisation reassessed: a response to Joan Busfield

Simon J. Williams, Catherine Coveney and Jonathan Gabe

The concept of medicalisation reassessed: a rejoinder

Joan Busfield

 

Transcultural Psychiatry

“In our community, a friend is a psychologist”: An ethnographic study of informal care in two Bhutanese refugee communities

Liana Chase and Ram P. Sapkota

The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community; n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.

In the Journals – June 2017, part one by Aaron Seaman

29 Juin 2017 - 9:14pm

Anthropology and Aging (open access)

The Social Context of Collective Physical Training among Chinese Elderly: An Anthropological Case Study in a Park in Beijing

Yeori Park

This study analyzes the social context in China where the elderly participate in collective physical training, a cultural activity specific to the country. For this study, senior citizens aged 60 or above who participated in collective physical training in a park in Beijing were observed for five months. Research results found that collective physical training enables formation of social networks providing mutual caring and support. On the other hand, the participants conform to the self-disciplined modern discourse to survive in the post-Mao society. They do collective physical training due to their social conditions, such as the poorly established welfare system for the aged, severance pay that is too low to cover medical expenses. Although the participants seem to autonomously choose collective physical training based on their own preferences, the context of Chinese society, including hidden government intentions, leads the elderly to participate in training activities.

Social Contract on Elderly Caregiving in Contemporary Chile

Carola Salazar

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

 

Anthropological Quarterly

SPECIAL COLLECTION: Producing Ebola: Creating Knowledge In and About an Epidemic

INTRODUCTION:

Producing Ebola: Creating Knowledge In and About an Epidemic

Catherine Bolten and Susan Shepler

ARTICLES:

Emerging Disease or Emerging Diagnosis? Lassa Fever and Ebola in Sierra Leone

Annie Wilkinson

It has become routine to attribute the tragedy of the West African Ebola epidemic to inexperience and lack of knowledge. Guinea, Liberia and Sierra Leone were portrayed as entirely unfamiliar with Ebola and therefore without relevant knowledge. The simplicity of this narrative is disturbed by the experience of Lassa fever, an infectious and deadly viral hemorrhagic fever (VHF), which is endemic in the three countries most affected by Ebola. This paper looks beyond Ebola in 2014 to the history of efforts to control VHFs in the Mano River and challenges the idea there was a vacuum of knowledge. Highlighted instead are politics of knowledge which have run through global health and which have prioritized particular forms of knowledge and ways of dealing with disease. Ethnographic research on the emergence of Lassa and the subsequent emergence of Ebola in West Africa is presented, focusing on the development of technologies and institutions to detect and manage both viruses. This provides a lens for exploring what was known and not known, how and by whom; and what was counted and what was not, and why. The anthropological literature on emerging diseases has so far focused on the social, economic, and cultural dynamics which produce disease burdens but less on the socio-technical processes which calibrate these burdens. The paper contributes to the anthropology of emerging infectious disease by more fully accounting for the intricacies, uncertainties and implications of diagnostic and surveillance practices for new diseases. The paper will add to post-Ebola debates around preparedness by connecting intricate sociotechnical perspectives on disease emergence with the politics of science and global health and questioning the way priorities, risks, and problems have been conceptualized within this.

Missing Bodies and Secret Funerals: The Production of “Safe and Dignified Burials” in the Liberian Ebola Crisis

Mary H. Moran

During the height of the Ebola crisis in West Africa, public health responders and the international media focused on dead bodies as sites of disease transmission when early contact tracing discovered the relationship between attendance at funerals and emerging clusters of new cases. Anthropologists were central to the emergence of new protocols for “safe and dignified” disposal of the dead, emphasizing alternative rituals and the flexibility of local practice. In the process, I suggest that the emotional impact of loss and bereavement was subordinated to the focus on ritual. The new knowledge produced about safe and dignified burials in West Africa reveals the absence of knowledge about the handling of dead bodies and the emotional impact of bereavement among journalists, anthropologists, and biomedical professionals alike.

Ebola Through a Glass, Darkly: Ways of Knowing the State and Each Other

Adam Goguen and Catherine Bolten

The Ebola epidemic unfolded in radically divergent manners in two neighboring villages in Sierra Leone, with one recording 40 cases and 20 deaths and the other recording zero cases, though they are located only 100 meters apart. Presented with identical information about Ebola’s cause and modes of transmission, one chief reacted by attempting to shield his village from outside knowledge and influence, encouraging his people to continue their normal practices of care and communion, and the other by instituting self-isolation, rapidly enforcing Ebola-specific practices among his residents. We argue that these opposing courses of action were the result of the chiefs interpreting health communications with respect to their social, historical, and political relationships with each other and with the state, and not as a result of one embracing medical knowledge and the other rejecting it. “Through a glass, darkly” refers to historical practices of knowledge interpretation in which knowledge is never treated as neutral information, but as implicated in relationships of power, rendering its political implications more important than the information conveyed. We distinguish between orthodoxy and orthopraxy—right belief versus right practice—to argue that the epidemic ended locally not through the circulation of knowledge, but through the circulation of Ebola-specific practice. We caution against treating knowledge only in terms of its production, circulation, and consumption, and urge a new focus on knowledge non-production, obfuscation, and rejection.

“We Know Who is Eating the Ebola Money!”: Corruption, the State, and the Ebola Response

Susan Shepler

Sierra Leonean production of knowledge about Ebola was, in large part, production of knowledge about “who ate the Ebola money.” This paper traces people’s responses to the Ebola crisis through a number of different moments, at each point reflecting on how their concerns about how Ebola money was being spent illuminate their expectations of their state. It argues that the Ebola crisis reveals people’s contradictory relationships to their own states, wherein they simultaneously mistrust their politicians and look to their politicians in a moment of crisis. The paper also investigates Sierra Leone’s relationship to the international community, concluding that the state’s weakness is produced, in part, by its place in the international system. The research is based on three field visits to Sierra Leone and Liberia in April 2014, July 2014, and January 2015 and draws on interviews and focus groups in urban and rural settings.

SOCIAL THOUGHT & COMMENTARY:

Epistemologies of Ebola: Reflections on the Experience of the Ebola Response Anthropology Platform

Fred Martineau, Annie Wilkinson, and Melissa Parker

By September 2014, it was clear that conventional approaches to containing the spread of Ebola in West Africa were failing. Public health teams were often met with fear, and efforts to treat patients and curtail population movement frequently backfired. Both governments and international agencies recognized that anthropological expertise was essential if locally acceptable, community-based interventions were to be designed and to successfully interrupt transmission. The Ebola Response Anthropology Platform was established against this background. Drawing together local and internationally based anthropologists, the Platform provided a coordinated and rapid response to the outbreak in real time. This article explores how the Platform developed and interacted with other epistemic communities to produce knowledge and policy over the course of the outbreak. Reflecting on the experiences of working with the UK Department for International Development, the World Health Organization and other agencies, we ask: what do these experiences reveal about the politics of (expert) knowledge and its influence on the design and implementation of policy? Did differing conceptions of the place of anthropology in humanitarian crises by policymakers and practitioners shape the contributions made by the Ebola Response Anthropology Platform? What are the implications of these experiences for future anthropological engagement with, and research on, humanitarian responses to health crises?

Ebola at a Distance: A Pathographic Account of Anthropology’s Relevance

Adia Benton

Drawing on a year of researching and writing about the West African Ebola epidemic from afar, I use the heuristic of virality to critically examine the collective US anthropology response to Ebola, a viral disease, and the anthropological knowledge networks formed to address the 2013 – 2015 outbreak. Specifically, I describe how digital media facilitated an entry point to build connections and knowledge around the epidemic in American anthropologists’ quest to prove the discipline’s relevance, the viral circulations of and replications of anthropological ideas in the Ebola response, and the attempts to shed pathogenic racial legacies of Africanist anthropology shaping US anthropology’s official response.

 

Body & Society

Staging Embryos: Pregnancy, Temporality and the History of the Carnegie Stages of Embryo Development (open access)

Sara DiCaglio

The founding of the Carnegie Institute’s Department of Embryology in 1913, alongside its systematization of embryo staging, contributed to the mechanization of developmental stages of embryo growth in the early 20th century. For a brief period in the middle of the century, attention to the detailed interrelation between embryo development and time made pre-existing ideas about pregnancy ends less determinative of ideas about that developmental course. However, the turn to the genetic scale led to the disappearance of this attention, replaced by a sense of biological life as seamlessly scripted. This study examines the history of what I refer to as temporal attention: attention to the live, unfolding potentialities within vital matter. The reintroduction of temporal attention to discussions of development allows us to more fully consider non-human vitality and the experiences of beings that house or otherwise intimately intersect with that vital tissue, regardless of outcomes.

Body Image and Prosthetic Aesthetics: Disability, Technology and Paralympic Culture (open access)

Tomoko Tamari

The success of the London 2012 Paralympic Games not only revealed new public possibilities for the disabled, but also thrust the debates on the relationship between elite Paralympians and advanced prosthetic technology into the spotlight. One of the Paralympic stars, Oscar Pistorius, in particular became celebrated as ‘the Paralympian cyborg’. Also prominent has been Aimee Mullins, a former Paralympian, who became a globally successful fashion model by seeking to establish a new bodily aesthetic utilizing non-organic body parts. This article examines how the modern discourse of prostheses has shifted from the made-up and camouflaged body to the empowered and exhibited body to create a new cultural sensitivity in terms of body image – prosthetic aesthetics. Prosthetic aesthetics oscillates between two polarized sensitivities: attractiveness/‘coolness’, which derive from the image of a perfect human-machine synthetic body, and from abjection/the uncanny, which is evoked by the actual materiality of the lived body incorporating a lifeless human-made body part.

On the Materialization of Hormone Treatment Risks: A Trans/Feminist Approach (open access)

Sari Irni

With a focus on hormone treatments, this article contributes to recent problematizations of the ontology of bodies, illnesses and medication. Hormone treatment is conventionally understood to comprise preparations like pills, patches or injections, and following from this understanding, the materiality of risk is perceived as potential adverse effects of pharmaceuticals within individual bodies. By discussing Finnish trans persons’ experiences of hormone treatments, and drawing from material feminisms and trans/feminist studies, this article rethinks what ‘hormone treatments’ and their risks materially entail. Stressing the importance of accounting for the relationality of risks, the article suggests that hormone treatment risks can be seen as Baradian ‘phenomena’ that materialize contextually within specific ‘treatment apparatuses’ and the power relations that saturate them. This process of materialization includes the gendering of risks and how the gender binary itself may at times constitute a risk.

 

Critical Public Health

Mother protection, child survival: narrative perspectives on child mental health services underutilization

Melody J. Slashinski

In the United States, increased national attention has generated a wealth of public health and epidemiologic research examining disparities in African American children’s mental health services utilization. Research has not yet been extended to examining the social structural mechanisms that keep these disparities stable and in place. Drawing from a larger urban ethnographic field study exploring the ‘everyday’ of health and illness within and across African American families living in an inner city public housing community, in this article I document the narratives of four African American mothers to illustrate how social structural mechanisms shape their decisions to seek or not mental health services for their children. I frame mothers’ decisions in terms of everyday violence, drawing attention to the institutionalized injustices that are normalized and rendered invisible because of their routine pervasiveness. I conclude with a discussion of integrating structural interventions to modify or reduce disparities in African American children’s mental health services utilization.

Visceral politics: obesity and children’s embodied experiences of food and hunger

S. Gunson, M. Warin, and V. Moore

Children have been made a priority in Australian government obesity interventions, with programmes tending to focus on promoting behaviour change in food and exercise practices. This paper reports findings from ethnographic research with a group of Australian children aged 10–14 years living in a low socio-economic suburban setting. We propose that central to these children’s experiences of food and eating is the negotiation and management of hunger. Historically, disadvantage has been embodied and inscribed on children’s bodies in very visible ways, and the coexistence of hunger and obesity is part of this continuum. Despite considerable evidence of food insecurity in our research site, issues of hunger were absent in an obesity intervention underway at the time. We examine how hunger was felt in children’s lives, how it was managed and the ways in which messages about eating less, while eating more ‘healthy foods’, were at odds with the children’s experiences of hunger. Moreover, we argue that hunger and obesity in this context were doubly stigmatised, as children were very aware of how their hunger and their bodies marked them as different and disadvantaged. Attention to both the embodied and social impacts of hunger on children and their everyday relationships is key in formulating more sensitive, contextualised public health interventions.

 

Culture, Medicine, and Psychiatry

SPECIAL ISSUE: Moral (and Other) Laboratories

Introduction to “Moral (and Other) Laboratories”

Teresa Kuan and Lone Grøn

“Moral (and other) laboratories” is a special issue that draws on Cheryl Mattingly’s notion of the “moral laboratory” to explore the uncanny interface between laboratory ethnography and moral anthropology, and to examine the relationship between experience and experiment. We ask whether laboratory work may provoke new insights about experimental practices in other social spaces such as homes, clinics, and neighborhoods, and conversely, whether the study of morality may provoke new insights about laboratory practices as they unfold in the day-to-day interactions between test tubes, animals, apparatuses, scientists, and technicians. The papers in this collection examine issues unique to authors’ individual projects, but as a whole, they share a common theme: moral experimentation—the work of finding different ways of relating—occurs in relation to the suffering of something or someone, or in response to some kind of moral predicament that tests cultural and historically shaped “human values.” The collection as a whole intends to push for the theoretical status of not merely experience itself, but also of possibility, in exploring uncertain border zones of various kinds—between the human and the animal, between codified ethical rules and ordinary ethics, and between “real” and metaphorical laboratories.

Humanity at the Edge: The Moral Laboratory of Feeding Precarious Lives

Mette N. Svendsen, Iben M. Gjødsbøl, Mie S. Dam, and Laura E. Navne

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of ‘the human’ that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that ‘the human’ at stake in the moral laboratory of feeding precarious lives puts ‘the human’ in anthropology at disposal for moral experimentation.

The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care

Lesley A. Sharp

Why do lab monkeys watch TV? This essay examines the preponderance of televisions in primate housing units based in academic research laboratories. Within such labs, television and related visual media are glossed as part-and-parcel of welfare or species-specific enrichment practices intended for research monkeys, a logic that is simultaneously historically- and ontologically-based. In many research centers, television figures prominently in the two inseparable domains of a lab monkey’s life: as a research tool employed during experiments, and in housing units where captive monkeys are said to enjoy watching TV during “down time.” My purpose is not to determine whether monkeys do indeed enjoy, or need, television; rather, I employ visual media as a means to uncover, and decipher, the moral logic of an ethics of care directed specifically at highly sentient creatures who serve as human proxies in a range of experimental contexts. I suggest that this specialized ethics of animal care materializes Mattingly’s notion of “moral laboratories” (Mattingly in Moral laboratories: family peril and the struggle for a good life, University of California Press, Berkeley, 2014), where television mediates the troublesome boundary of species difference among the simian and human subjects who cohabit laboratory worlds.

At the Edge of Safety: Moral Experimentation in the Case of Family Therapy

Teresa Kuan

“At the Edge of Safety” argues for thinking of structural family therapy as a “moral laboratory.” Borrowing a trope from Cheryl Mattingly’s recent book Moral Laboratories, the article reconsiders a therapeutic style that was once controversial by analyzing personal stories of supervision—i.e. professional training—in light of Mattingly’s suggestion that a social space in which people conduct experiments on themselves and their lives may be considered a moral laboratory. Family therapy is especially good to think with, because it is simultaneously a real and a metaphorical laboratory, physically lab-like in its use of visual technologies, yet moral in the way it puts the possibility for situational change in the hands of human actors. The technological apparatus stages evidence for sub-visible, interpersonal dynamics, while the provocative quality of not only therapeutic actions, but also of supervision, points to an ethos of experimentation. Stories of supervision reveal how personal of an experience being supervised can be. Trainees are pushed to become something otherwise, in learning to “expand” their styles. Sometimes the push is just right. Sometimes it goes too far. Whatever the case may be, the stories analyzed speak to anthropological questions concerning the uncertainty of human action and the many ways people can unknowingly injure one another with small hurts.

The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time

Lone Grøn

Why is “everything I know is the right thing to do a million miles removed from what I do in reality?” This question posed by Rita, my main interlocutor and friend in a fieldwork that started in 2001–2003 and was taken up again in 2014–2015, opens up an exploration of moral work and moral selves in the context of the obesity epidemic and weight loss processes. I address these questions through the notion of “moral laboratories” taking up Mattingly’s argument that moral cultivation over time cannot be disconnected from a notion of self. Mattingly has consistently argued for a biographical and narrative self, which is processual and created in community. Along these lines, and by recourse to the German philosopher Bernhard Waldenfels’ phenomenology, I will propose the notion of a responsive self. The responsive self highlights the eventness of ongoing experimentation against the odds and captures equally pathic and agentive dimensions of a self that both persists and is transformed over time.

Engaging with Dementia: Moral Experiments in Art and Friendship

Janelle S. Taylor

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.

Comments on Moral (and Other) Laboratories

Michael Lambek

Moral (and Other) Laboratories and the Semantic Impertinence of Metaphor: An Afterward

Cheryl Mattingly

 

East Asian Science, Technology and Society

The Politics of Preservation and Loss: Tibetan Medical Knowledge in Exile

Stephan Kloos

This article analyzes the history and development of Tibetan medicine in exile from the perspective of the pervasive Tibetan exile narrative of preservation and loss. Through combined ethnographic and historical data, it shows how the preservation of traditional Tibetan medical knowledge in exile entails a process of a fundamental reinvention of its nature, not only rendering it modern but also (re)investing it with considerable hegemonic power. As Tibetan medicine in exile has come to stand for the nation as envisioned by the Tibetan government-in-exile, its preservation is imbued with a significance that far exceeds the medical realm. Indeed, despite a well-established discourse of preservation and loss that implies a precarious state of weakness, Tibetan medical knowledge functions (along with Tibetan Buddhism) as an important means to preserve a weakened but still existing and real Tibetan cultural hegemony in exile. Thus, while common rhetoric assumes a triumph of modern science and a gradual loss of traditional knowledge, the case of Tibetan medicine shows that we need to take the latter seriously as an important apparatus of power even today.

The Case of the Suzhou Hospital of National Medicine (1939–41): War, Medicine, and Eastern Civilization (open access)

Keiko Daidoji and Eric I. Karchmer

This article explores the founding of the Suzhou Hospital of National Medicine in 1939 during the Japanese occupation of Suzhou. We argue that the hospital was the culmination of a period of rich intellectual exchange between traditional Chinese and Japanese physicians in the early twentieth century and provides important insights into the modern development of medicine in both countries. The founding of this hospital was followed closely by leading Japanese Kampo physicians. As the Japanese empire expanded into East Asia, they hoped that they could revitalize their profession at home by disseminating their unique interpretations of the famous Treatise on Cold Damage 傷寒論 abroad. The Chinese doctors that founded the Suzhou Hospital of National Medicine were close readers of Japanese scholarship on the Treatise and were inspired to experiment with a Japanese approach to diagnosis, based on new interpretations of the concept of “presentation” (shō / zheng 證). Unfortunately, the Sino-Japanese War cut short this fascinating dialogue on reforming medicine and set the traditional medicine professions in both countries on new nationalist trajectories.

Song Ci (1186–1249), “Father of World Legal Medicine”: History, Science, and Forensic Culture in Contemporary China

Daniel Asen

Song Ci (1186–1249) was an official of the Southern Song Dynasty best known for authoring the Collected Writings on the Washing Away of Wrongs (Xiyuan jilu), a work often hailed as the world’s first systematic treatise on forensic medicine. While biographical details about his life were known in local history writings during the late imperial period, Song had garnered relatively little attention among those who handled forensic examinations, despite the fact that his work had impacted Chinese forensic practices for centuries. In modern times, by contrast, Song has been praised by historians and forensic professionals and viewed as a founding figure of the modern forensic sciences in China and, in the boldest claims, across the globe. Song has also become the subject of historical novels, television shows, and other popular media. This article examines the ways in which the historical image and meanings of Song Ci have been negotiated in China over the Republican period (1912–49) and after the founding of the People’s Republic of China in 1949. It argues that a confluence of modern developments—new concepts of national and world history, the successful implementation of legal medicine in China, and the global popularity of forensicsthemed popular culture—has given new meaning and importance to this thirteenth-century figure under the new conditions of the twentieth and early twenty-first centuries.

FORUM: Provincializing STS

Body-Head Separation, or a Multihanded/Multiheaded Guanyin: Note on the Birth of the “Provincializing STS” Forum

Wu Chia-Ling

Provincializing STS: Postcoloniality, Symmetry, and Method

John Law and Lin Wen-yuan

Postcolonial Specters of STS

Warwick Anderson

STS, TCM, and Other Shi 勢 (Situated Dispositions of Power/Knowledge)

Judith Farquhar

Encounters, Trajectories, and the Ethnographic Moment: Why “Asia as Method” Still Matters

Atsuro Morita

This Way Does Not Come to the Point: Comments on “Provincializing STS: Postcoloniality, Symmetry, and Method”

Ruey-Lin Chen

The Stickiness of Knowing: Translation, Postcoloniality, and STS

John Law and Wen-yuan Lin

 

Ethos

SPECIAL ISSUE: Social Contagion and Cultural Epidemics

Social Contagion and Cultural Epidemics: Phenomenological and “Experience‐Near” Explorations

Lone Grøn and Lotte Meinert

We open the special issue by asking: how are groups of people affected by similar conditions, even when these are not biologically contagious? This is linked to broader theoretical and empirical questions of how we are influenced by others and by the specific times and places in which we live. We describe the history and etymology of the concepts of epidemics and contagion and argue that we need to reclaim some of the pre-Hippocratic meanings of these concepts. Importantly, we suggest a postponement, or epoche, of the negative moral judgment of these terms with a view to exploring what actually happens when noncommunicable diseases and conditions spread. We introduce a variety of existing approaches and argue that they have taken us only part of the way in trying to understand social contagion and cultural epidemics. The articles in this issue explore a variety of noncommunicable conditions that have gained global prominence as epidemic problems—diabetes, obesity, trauma, and autism—through perspectives and concepts from phenomenological and experience-near traditions. This includes emic ideas of social contagion and contamination, intersubjective units of analysis, causal indeterminacy, as well as diversity and transformation in social contagion.

The Weight of the Family: Communicability as Alien Affection in Danish Family Histories and Experiences of Obesity

Lone Grøn

Can we think of something like communicability or contagion in relation to diseases and conditions that have hitherto been categorized as noncommunicable? In this article, I take my ethnographic point of departure in the lifelong—and transgenerational—experiences of obesity, weight gain, and weight loss of four Danish families in order to show how kinship, relatedness, and dwellings emerge as simultaneously homey and alien contagious connections, when exploring communicability in the context of what is often referred to as “the obesity epidemic.” Analytically, I am inspired by the German philosopher Bernhard Waldenfels’ (2007, 2011a) phenomenology of the alien, and through an analysis of the tracing of the spread of obesity to kinship ties, Danish hygge and the places and times in which we live, I propose the notion of affection as a phenomenologically grounded theory of social contagion.

Despairing Moods: Worldly Attunements and Permeable Personhood in Yap

C. Jason Throop

Building upon ongoing efforts to further a phenomenological anthropological engagement with affective and mooded dimensions of moral experience, the article examines the ways in which everyday moods may disclose forms of attunement to worldly conditions. The article focuses specifically upon the mood-inflected concerns of a Yapese woman suffering from type II diabetes named “Thiil” who despairs of the possibility that her children will eventually become afflicted with the disease as well. A central goal of the article is to explore the ways in which Thiil’s mood-inflected responses to her illness disclose an attunement to the “communicable” pathways of an otherwise “noncommunicable” disease.

Dreamscapes of Intimacy and Isolation: Shadows of Contagion and Immunity

Douglas Hollan

In this article, I use the study of selfscape dreams to discuss contagion-like processes not as unique or extraordinary phenomena per se, but rather as a particular kind of social influence more broadly conceived. In particular, I argue that dream consciousness gives us clues about how social influence (and contagion) actually works: partially, incrementally, in a “condensed” way, through a variety of sensory and perceptual modalities, contingent on and delimited by the emotional memories of those involved, but with the potential of exceeding those contingencies and limitations by the ability of all of the participants to imaginatively elaborate upon what is experienced and communicated. I compare and contrast how and why two men from two very different parts of the world dream of their deceased parents. I use the dreams to illustrate how people come to inhabit, experience, and become influenced by their social and cultural worlds in the particular way they do and also to demonstrate how dream experience may be implicated in everyday behavior.

A Phenomenological Approach to the Cultivation of Expertise: Emergent Understandings of Autism

Mary C. Lawlor and Olga Solomon

In this article, we draw on narrative phenomenological (Mattingly 2010) and ethnographic projects to investigate how phenomenology may contribute to understanding how practical, experientially gained, expertise is cultivated in extraordinary circumstances. The lived world of autism provides a compelling context for such an exploration. Drawing on ethnographic data, we present arguments related to how a phenomenological approach to understanding autism can be productive by examining the cultivation of expertise and the contagion of knowledge and understanding. Family expertise that is grounded in lived experience often reveals the limitations of both public knowledge and scientific evidence and is generative of a kind of practical knowledge that warrants diffusion. Consideration is given to the specific contributions of a phenomenological approach to understanding autism and learning in collective engagements. Contagion as both a facilitative and positive phenomenon and a potentially stressful or harmful development is discussed.

Autism and The Ethics of Care: A Phenomenological Investigation Into the Contagion of Nothing

Cheryl Mattingly

This article investigates the social contagion of autism from a phenomenological perspective. It asks: Can a phenomenological approach, rather than merely illustrating the typologies revealed by constructionist and political economic approaches, generate new categories because it insists on a different unit of analysis rooted in a first-person perspective? To answer this, the article contrasts a third-person account of autism as an epidemic of representation and a phenomenological account. Drawing upon philosophical phenomenology (Gadamer in particular), it broadly outlines what is at stake in the phenomenological insistence on the primacy of the first-person perspective. Turning to an ethnographic case, it examines how the category of autism spectrum disorder (ASD), as it is lived by one family, poses a threat far more pernicious than a third-person exploration of ASD might suggest. As a lived experience, it becomes linked to other epidemics and life conditions, emerging as the ominous category “becoming nothing.”

“These Things Continue”: Violence as Contamination in Everyday Life After War in Northern Uganda

Lotte Meinert and Susan Reynolds Whyte

After decades of violent war, families are rebuilding their lives in the Acholi subregion of Northern Uganda. The return to normal order is marked by problems people see as consequences of the years of insecurity: mental illness, alcoholism, domestic violence, marital instability, and land conflicts that sometimes turn vicious. The ravages of war and years of constraint have left a legacy of troubles that is contagious and contaminating. The war is over, but people say that “these things continue.” In this article, we follow the case of one family and explore the social contagion and contamination of “these things.” We relate Acholi ideas of cen, the spirits of the vengeful dead, to Post-Traumatic Stress Disorder (PTSD) and phenomenological conceptions of violence and “the alien” in human experience.

 

Journal of the Royal Anthropological Institute

A flavour of Alzheimer’s

Laurence Anne Tessier

This article describes how today in the United States neurologists diagnose forms of dementia, such as Alzheimer’s disease and frontotemporal dementia. Taking as a starting-point the pervasive context of uncertainty in the diagnosis of neurodegenerative diseases, it examines how uncertainty is not merely an epistemological obstacle to the making of knowledge. On the contrary, the article analyses how uncertainty positively incites the use of clinicians’ ‘feelings’ in diagnostic work. Drawing on observations of clinical consultations and team meetings, it studies how, alongside contemporary instruments of objectification, clinicians use, share, and discuss their ‘feelings’ to ultimately renew knowledge about brain diseases. In documenting the manner in which medical expertise is bound to a concrete experience of the world, this article further explores how experts’ ‘intuition’ can be grasped as a conscious and effortful process, rather than as something ineffable, resisting analysis, and confined to an unconscious background.

Caring claims and the relational self across time: grandmothers overcoming reproductive crises in rural China

Charlotte Bruckermann

Revisiting the notion of relational personhood from a Chinese perspective, this article explores the premises of exchange underlying discourses of care, reproduction, and kinship in anthropology. Grandmothers contribute much of the care needed for reproduction of the next generation of children in the Chinese countryside. Their motivation to contribute care to secure offspring stems from the frustration of their past familial desires, and their hopes for transcendence through reproduction in the future. Grandmothers secure claims to offspring through their care between the interstices of the state bureaucracy and patrilineal norms. This care is not simply nurturing but can also become coercive and competitive. As Chinese grandmothers overcome past reproductive hardships by claiming future offspring through care, their selfhood not only becomes distributed through exchange with others, but also is dispersed across time in relation to past experiences and future aspirations of the self.

 

Medical Anthropology Quarterly

The Irrelevance Narrative: Queer (In)Visibility in Medical Education and Practice

William J. Robertson

How might heteronormativity be reproduced and become internalized through biomedical practices? Based on in-depth, person-centered interviews, this article explores the ways heteronormativity works into medical education through the hidden curriculum. As experienced by my informants, case studies often reinforce unconscious heteronormative orientations and heterosexist/homophobic stereotypes about queer patients among straight and queer medical students alike. I introduce the concept of the irrelevance narrative to make sense of how queer medical students take up a heteronormative medical gaze. Despite recognizing that being queer affects how they interact with patients, my informants describe being queer as irrelevant to their delivery of care. I conclude with a discussion of how these preliminary findings can inform research on knowledge production in biomedical education and practice with an eye toward the tensions between personal and professional identity among biomedical practitioners.

Afghan Refugee Explanatory Models of Depression: Exploring Core Cultural Beliefs and Gender Variations

Qais Alemi, Susan C. Weller, Susanne Montgomery, and Sigrid James

Relatively little empirical attention has been paid to understanding how refugees conceptualize depression and how this concept varies between genders. The purpose of this study was to explore beliefs about depression among Afghans residing in San Diego County, California, using cultural consensus analysis. Using the prescribed mixed-method approach, we employed results from in-depth interviews to develop a culturally meaningful questionnaire about depression. Consensus analysis of responses to questionnaire items from 93 Afghans (50 men, 43 women) indicates shared beliefs that associates depression causality with mild traumatic experiences and post-resettlement stressors, symptomatology to include culturally salient idioms of distress, and treatment selections ranging from lay techniques to professional care. Divergence between genders occurred most in the symptoms subdomain, with women associating depression with more somatic items. This study contributes to understanding the etiology of and cultural responses to depression among this population, which is critical to improving culturally sensitive intervention for Afghan refugees.

Neurasthenia, Generalized Anxiety Disorder, and the Medicalization of Worry in a Vietnamese Psychiatric Hospital

Allen L. Tran

This article examines two forms of the medicalization of worry in an outpatient psychiatric clinic in Ho Chi Minh City, Vietnam. Biomedical psychiatrists understand patients’ symptoms as manifestations of the excessive worry associated with generalized anxiety disorder (GAD). Drawing on an ethnopsychology of emotion that reflects increasingly popular models of neoliberal selfhood, these psychiatrists encourage patients to frame psychic distress in terms of private feelings to address the conditions in their lives that lead to chronic anxiety. However, most patients attribute their symptoms to neurasthenia instead of GAD. Differences between doctors’ and patients’ explanatory models are not just rooted in their understandings of illness but also in their respective conceptualizations of worry in terms of emotion and sentiment. Patients with neurasthenia reject doctors’ attempts to psychologize distress and maintain a model of worry that supports a sense of moral selfhood based on notions of obligation and sacrifice.

Resisting “Reason”: A Comparative Anthropological Study of Social Differences and Resistance toward Health Promotion and Illness Prevention in Denmark

Camilla Hoffmann Merrild, Rikke Sand Andersen, Mette Bech Risør, and Peter Vedsted

Social differences in health and illness are well documented in Denmark. However, little is known about how health practices are manifested in the everyday lives of different social classes. We propose acts of resistance and formation of health subjectivities as helpful concepts to develop our understanding of how dominant health discourses are appropriated by different social classes and transformed into different practices promoting health and preventing illness. Based on fieldwork in two different social classes, we discuss how these practices both overtly and subtly challenge the normative power of the health promotion discourse. These diverse and ambiguous forms of everyday resistance illustrate how and when situated concerns move social actors to subjectively appropriate health promotion messages. Overall, the different forms of resistance elucidate how the standardized awareness and education campaigns may perpetuate the very inequalities they try to diminish.

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

Margaret S. Winchester, Janet W. McGrath, David Kaawa‐Mafigiri, Florence Namutiibwa, George Ssendegye, Amina Nalwoga, Emily Kyarikunda, Judith Birungi, Sheila Kisakye, Nicholas Ayebazibwe, Eddy J. Walakira, and Charles Rwabukwali

Antiretroviral treatment programs, despite biomedical emphases, require social understanding and transformations to be successful. In this article, we draw from a qualitative study of HIV treatment seeking to examine the drug-taking routines and health-related subjectivities of men and women on antiretroviral treatment (ART) at two sites in Uganda. We show that while not all participants in ART programs understand clinical protocols in biomedical terms, they adopt treatment-taking strategies to integrate medication into daily practices and social spaces. In turn, these embedded practices and understandings shape long-term hopes and fears for living with HIV, including the possibility of a cure. More significant than new forms of citizenship or sociality, we suggest that quotidian dimensions of treatment normalization shape the long-term experience of medication and outlook for the future.

Publically Misfitting: Extreme Weight and the Everyday Production and Reinforcement of Felt Stigma (open access)

Alexandra Brewis, Sarah Trainer, SeungYong Han, and Amber Wutich

Living with extreme weight in the United States is associated with discrimination and self-stigma, creating structural exclusions, embodied stress, and undermining health and wellbeing. Here we combine ethnographic interviews and surveys from those with experiences of living with extreme weight to better explain how this vulnerability is created and reinforced by public cues, both physical (e.g., seatbelts) and social (the reactions of strangers). “Misfitting” is a major theme in interviews, as is the need to plan and scan constantly while navigating too-small public spaces. The most distressing events combine physical misfitting with unsympathetic reactions from strangers. Sensitivity to stigmatizing public cues reduces with weight loss, but does not disappear. This study explains one basic mechanism that underlies the creation of felt stigma related to weight even after weight loss: the lack of accommodation for size and the lack of empathy from others that characterize modern urban spaces.

Embodying Transition in Later Life: “Having a Fall” as an Uncertain Status Passage for Elderly Women in Southeast London

Miriam Boyles

In their 2014 report, the charity AgeUK states that one-third of older people (over 3 million) fall each year. This article takes a focused look at falling by describing four women’s accounts of “having a fall” in Walworth, southeast London, which sheds light on the experience of personal and corporeal change in later life. While some experiential studies of falling have made reference to a loss of embodied control and changes in identity, these aspects have not been explored in sufficient depth. Attending closely to the embodied experience of falling for older women in the context of everyday activity reveals the uncertainty surrounding what it actually signifies and the powerful effect this uncertainty has on their everyday lives and sense of self. This in-depth phenomenological account speaks to important gaps in the literature on falls, given the current research emphasis on the management of falls risk.

What’s At Stake in Speculation? by Matthew Wolf-Meyer

26 Juin 2017 - 6:20pm

We’ve long been thinking about health, well-being, illness, sickness, and disease, in relation to risk. That things might not be maintained at their present levels, either individually, among our cared-for, or socially, is not something new, even if we’ve entered a period of intensification, with calls to ‘repeal and replace’ the Affordable Care Act, and the slow, often subtle chipping away at social safety net policies in the United States and throughout the North Atlantic in the spirit of austerity and for the sake of freedom. What might have been primarily personal and interpersonal concerns about health and disease have also expanded to include the environment and the species, as we continue to think through the Anthropocene and its consequences for exposures to environmental dangers – toxins and radiation foremost among them – and the spread of once localized diseases to the global stage, as the recent zika outbreak raised, and Ebola recurrently threatens. The intensification and generalization of risk may very well entail the intensification and generalization of speculation; what are our individual and collective possible futures? And what better way to confront our possible futures than through media that explicitly engages with the future, speculative and science fiction?

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance. In this sense, science fiction and speculative fiction help us exercise our speculative capacities, they allow us to think through a set of possibilities and a set of potential solutions. In doing so, they make life’s continuance possible, for individuals, communities, and the species – or, at least, they lay the foundation for enacting a variety of solutions in the face of looming disaster. Whether or not speculative futures are taken seriously – and whether or not a set of responses to their reality seem possible – is potentially an outcome of their presentation in media, and the popularity of those representations.

Across the pieces collected in this series on speculative health, contributors point to the need for scholars to engage critically and appreciatively with a variety of media and popular genres of fiction. From the recent popularity of ‘weird fiction’ to the ongoing presence of the Star Trek franchise, from the post-WWII generation of science fiction writers – like Octavia Butler and Ursula Le Guin – to more contemporary writers engaged with the implications of social media and internet connectivity, contributors point to a long-standing interest in representations of the human body, health and disease, and concerns about communicability and contagion in speculative literature. Engaging with these media may lead scholars to think critically about how their own media consumption shapes their views about viable research projects, empirical observation, and the futures we participate in making. Engaging with genres like speculative and science fiction may also inspire experiments in the presentation of social scientific research data, encouraging writers and readers to conceptualize new modes of ethnographic mediatization in an effort to engage the speculative capacities of readers.

In this respect, it’s worth thinking through Charles Briggs’ concept of biocommunicability, the process through which media comes to infect individuals and communities with ideas and categories. Speculative fictions have the potential to be contagious, to create ways of seeing the world that infect a broad swath of media consumers, both directly through the consumption of a given media, but also more broadly, as those readers shape their practices based on speculative futures. Science fiction scholars enjoy pointing to these very quirks of history, like Robert Heinlein’s speculative ‘waldo’ technology, which would come to be realized in ubiquitous smart phones and tablets, Aldous Huxley’s ‘soma’ seems to have been realized in widespread antidepressant pharmaceuticals, and Hugo Gernsback’s televised communication has become realized in video chat technologies (to name just three). Ideas spread through fiction, literature and lies, and inspire people to act in ways that might realize those ideas or forestall them. That speculative and science fiction have become wildly popular genres in recent decades might lead us to consider just how infectious these ideas are as well as the paths that they help carve through the world.

I’ve long been taken with Thomas Disch’s The Stuff Our Dreams are Made of, his survey of the history of science fiction and its popularity. Like so many science fiction scholars, Disch has an argument to make about what was the first science fiction story – his unconventional choice is Edgar Allan Poe’s ‘The Balloon-Hoax.’ It wasn’t called ‘The Balloon-Hoax’ at the time: Poe published a short piece in New York’s The Sun in 1844, claiming that a man had traversed the Atlantic Ocean in three days under the power of a gas balloon. Readers were apparently so taken with the idea that they believed it could be real and swarmed the offices of The Sun in an effort to get copies of the historic newspaper. But it was all a lie, and the newspaper was forced to issue a retraction, explaining that the story had been a work of fiction. It’s this line between reality and fiction that speculation so often treads – at its most deceptive, it convinces us of its truth, it makes us want to believe in its veracity, and appeals to our speculative reason to make sense of a lie, lies which are sometimes massive deceptions.

Because of this increasing popularity – and even mainstreaming – of speculative and science fiction, it’s also worth thinking about the relationship these genres have to capitalism and financialization, processes which rely on their own forms of speculation – to create profit and avoid crisis. Or maybe, to create crises and therein produce profit. In making emergent technologies desirable, if not entirely plausible, speculation compels investments, social and capital. Now a lesson in speculation gone awry, Theranos convinced investors that its emergent technologies could perform futuristic-seeming feats: with small amounts of blood, a wide variety of medical testing could be efficiently conducted. What seemed too good to be true turned out to be just that. But what is important here is how a speculative promise inspired investment – and a host of lies, fraudulent reporting, and shady practices, all to maintain the speculation. As playful and fun as speculation can be, it can also be corrupting and horrific – especially when it comes to the species-threat that the Anthropocene is increasingly taken to be.

Thinking through speculation and health asks us to think through scale – from individuals, to communities, to species, to planet – maybe even to the cosmos. In considering our individual and collective futures and their potential outcomes, speculation encourages scalar imaginations that might inspire action. The challenge in the present is thinking through the ethical implications of these actions and their possible future repercussions. Many futures are possible, but how do we adjudicate which are the right futures to bring into being? If we forego utilitarian attempts at creating the best health for the most humans and non-humans, what are we left with? Can we even hold onto a concept like ‘health’ in the long term? Let’s see.

 

Matthew Wolf-Meyer is Associate Professor of Anthropology at Binghamptom University. His work focuses on medicine, science and media in the United States to make sense of major modern-era shifts in the expert practices of science and medicine and popular representations of health. His book The Slumbering Masses: Sleep, Medicine and Modern American Life was the first book-length social scientific study of sleep in the United States. It offers insights into the complex lived realities of disorderly sleepers, the long history of sleep science, and the global impacts of the exportation of American sleep. He is currently finishing a book manuscript on the alternative histories of American neuroscience, seen through the lens of neurological disorders, tentatively titled The Other Century of the Brain: Disability, Neuroscience and the Politics of American Care. He is in the beginning stages of a project entitled The Colony Within on the history and contemporary medicalization of digestion and excretion in the U.S.

The Impossibility of the Inert: Placebo and the Essence of Healing by Thomas J. Csordas

23 Juin 2017 - 7:24pm

The concept of placebo is predicated on the opposition between active and inert, deploying this opposition to assert that an action or substance with no inherent active principle can have a paradoxical effect “as if” it were active.1 My thesis is that there is no such thing as the inert in human affairs, relationships, or experience. Think of the apparently simple retort of the bullied child that “sticks and stone may break my bones but names can never hurt me.” Contrary to this retort, names can indeed hurt. They are not inert, but carry an actual force identifiable as hate or disdain. And what of the retort itself? Is it a vain, desperate, and ultimately inert act of self-protection, effective only insofar as it taps into the “as if” logic of the placebo? I think not, though like any remedy it must be applied under the right conditions and with the understanding that it may not be uniformly effective in the degree to which it buffers the noxious influence of name-calling with an equivalent, self-confident force of self-esteem. There is also, however, an easily overlooked element of materiality in the retort. That is its rhythm: the fact that it is phrased in trochaic meter. It is not only that meter adds the force of incantation or song, but that it directly engages the embodied existential immediacy of the situation, contributing an element of jauntiness encompassing not only tone of voice but posture and gesture.

The notion of materiality as I have just used it is of value in reflecting on the impossibility of the inert. Consider water – presumably a substance more inert even than the classic sugar pill of placebo research – from the standpoint of a Navajo indigenous healer, a Road Man of the Native American Church who was also a college instructor of Navajo culture: “Water is the most powerful medicine.” He elaborated that when a person is ill the most basic thing they need is water, and it is what one thinks of first to give an afflicted person. All of life is based on water, which it needs to survive and thrive. The insistence on water being a powerful medicine is all the more compelling given that it is expressed by a Road Man who administers peyote, the sacred cactus whose mescaline and related alkaloids render the idea of inertness massively irrelevant. So in what sense can we understand water as a medicine and not inert? First, this is a matter of adequate hydration. Second, however, the act of giving in itself is not inert insofar as it conveys a sense of care along with the material substance being given. Here the process of recognizing the power of water as medicine is identical with investing water with the power of care. It is consecrated in the sense used by anthropologist R.R. Marrett, who defined sacrament as investing a natural function with supernatural authority.2 Ritual in general and sacraments in particular are purposive and not passive, not a matter of routine and repetition, but of vigilance and a summons to exertion. They are not inert.

The uses of rhinoceros horn offers an example that taps a more complex series of relations between care/commercialization, specific/non-specific, and active/inert. Currently, of the thirty once-living rhinoceros species, all five that remain are near extinction because of poaching. Over the centuries rhinoceros horn has been used in Traditional Chinese Medicine to treat a broad range of conditions including fever, rheumatism, gout, snakebites, hallucinations, nightmares, typhoid, and headaches.3-8 Though studies indicate the horn is not entirely inert, in the last decade an explosion of horn use has taken place in Vietnam, where new uses have been introduced including as a palliative treatment, and possibly a cure for cancer. This popular usage corresponds to rapid increase in the proportion of wealthy people who can access the substance, combined with the quickly rising cancer rate in a country with still-inadequate health care. Rhinoceros horn has also become commonly used to support an extravagant lifestyle, reputedly allowing people to drink more and curing hangovers due to its traditional attribution of enhancing liver function. Indeed, rhino horn powder mixed with rice wine is described as the drink of millionaires. The false notion that rhinoceros horn is used as an aphrodisiac in Asia appears to be the fabrication of mid-20th century Western writers, but ironically under the influence of such writers there now does appear to be a trend for such usage in Vietnam,4,5,7 one that is “more effective than Viagra in allow men to have sex for two to four hours.”9 A generous conclusion would be that the traditional medical system is evolving, and a critical one would be that traditional medicine is being distorted and exploited. One is hard pressed not to conclude that this phenomenon bears some similarity to off-label prescribing in our own society. How could a placebo effect for one condition not be enhanced by the proven effectiveness of the same substance for another condition? Finally, there is the ironic trend in which the Vietnamese market has been infused with fake rhinoceros horn – the placebo form of the placebo.

Discussion of the placebo is intertwined with how ritual healing works, fundamental to which is the “psychotherapy analogy”: the idea that ritual healing works in an indigenous setting as psychotherapy works in a Euro-American setting, and can be understood as that culture’s equivalent of psychotherapy.10-11 One practice of ritual healing to which the psychotherapy analogy applies is exorcism in the Roman Catholic Church, a liturgical rite intended to relieve affliction due to possession by evil spirits, performed by a priest under permission from a bishop. In the past decade Catholic exorcism has acquired a more prominent profile in the public sphere than at any time since the beginning of the Enlightenment. The Church accepts psychiatry insofar as, officially, mental illness must be professionally ruled out prior to recognizing a problem as due to demonic affliction.

This relation between psychiatry and religion is relevant to an understanding of placebo. The 2006 theology dissertation of an American priest who serves as his diocesan exorcist addresses the relation between the exorcist and psychiatrist by categorizing mental health professionals into three categories: those who completely reject the use of exorcism in any circumstance and dismiss it as medieval “hocus pocus;” a “placebo” group who regard exorcism as potentially to be a simple solution or a “quick fix;” and a category, “well-regarded by exorcists, [is] that of medical practitioners, including psychologists and psychiatrists, who are willing to work alongside exorcists and theologians in caring for the possessed and other people otherwise affected by demonical forces.”12 The palpable distress experienced by those who seek the help of exorcists is not only assessed in terms of the presence or absence of demonic activity but also in terms of the presence or absence of mental illness.

Psychiatrists and psychologists who are both practicing Catholics and convinced in the ontological reality of evil spirits consult and assist exorcists. One such Catholic psychiatrist, who holds a medical school faculty position in psychiatry as well as a clinical position in the affiliated mental hospital, responded to an article in a Catholic magazine written by the dean of his medical school. The dean, himself a Catholic, argued that what in biblical times was defined as demonic possession corresponds to what today is understood to be mental illness. My interlocutor agreed with everything except the obsolescence of evil spirits, and argued that evil spirits are, in his phrase “ontological entities.” When I asked if his position was not a challenge to rationality, he invoked Aquinas on the synthesis of faith and reason.

This leads to a series of peculiar questions. If possession is understood to be mental illness in actuality, would that mean exorcism must by definition be understood as placebo? Would that conclusion be reversed if exorcism was redefined as a form of psychotherapy? If demons were ontological entities, would that allow exorcism to be defined as active rather than inert? If a mentally ill person was possessed and then healed by exorcism, would its effect on the possession be understood as active while its effect on the psychiatric disorder be understood as placebo? Are we justified in describing the demonic spirit as a nocebo – an inert, immaterial entity capable of causing harm to humans? Are we justified in describing the rite of exorcism as a placebo – an inert, symbolic performance? It is out of the question to say that the afflicted are not really suffering and therefore exorcism as an inert treatment is only alleviating a non-effect. Exorcists and their assisting mental health professionals seriously endeavor to distinguish cases of psychiatric disorder and demonic possession, and moreover to consider whether an individual can be said to be both mentally ill and possessed. One exorcist has written that the criterion of demonization is that there is a kind of “surplus” in the sense that the affliction “goes beyond” what is typical of psychiatric disorder.13 This suggests that there may be a phenomenological surplus distinctive to the Roman Catholic cultural milieu which is expressed, enacted, and experienced in specifically Catholic terms. In other words, following the premise that each culture engenders the problems for which it then creates solutions, the possession/exorcism complex may be such a phenomenon.

Finally, contrary to what one might expect, exorcism is not understood as a one-shot magic bullet, or a miracle technique. It is typically an ongoing process requiring multiple sessions, and it is said that a complete liberation from demonic influence can require 5-7 years if a person if truly possessed. It is not so much that this “incremental efficacy”10 makes exorcism analogous to extended psychotherapy as that the impossibility of the inert does not require healing to be dramatic and miraculous. What guarantees the impossibility of the inert is not only meaning but care. Meaning and care are invested in the medicine or treatment. From the side of the patient, care makes an impression, and I choose this word precisely because it bears both a material and mental sense. The degree of this impression is in turn contingent on the nature and extent of the afflicted person’s engagement in the process of becoming well, an element that can never be completely controlled for in a clinical trial. Care, investment, impression, and engagement are the human phenomena that need to be isolated and elaborated, because they are the active ingredients of the placebo effect, the agents that guarantee the impossibility of the inert.

 

Notes

  1. A longer version of this essay was presented to the Robert Wood Johnson Seminar on Healing and Placebo: Medicine, Religion and Ritual, Harvard Medical School in 2014. Research on Navajo healing was funded by the National Institute of Mental Health and approved by the IRB at Case Western Reserve University. Research on Roman Catholic exorcism was funded by the Social Science Research Council and approved by the IRB at the University of California, San Diego.
  2. Marrett, R. Sacraments of Simple Folk. Oxford: Clarendon Press, 1933.
  3. Rhino Horn Use: Fact vs. Fiction. 2010 http://www.pbs.org/wnet/nature/episodes/rhinoceros/rhino-horn-use-fact-vs-fiction/1178/
  4. Ellis, R. Poaching for Traditional Chinese Medicine. EAZA Rhino Campaign 2005-6. http://www.savetherhino.org/rhino_info/threats_to_rhino/poaching_for_traditional_chinese_medicine
  5. Milliken, T., Shaw, J. The South Africa – Viet Nam Rhino Horn Trade Nexus: A deadly combination of institutional lapses, corrupt wildlife industry professionals and Asian crime syndicates. TRAFFIC, Johannesburg, South Africa, 2012.
  6. Do, H. B., Dang, Q. C., Bui X. D., Do, T. D., Pham, V. H., Vu, N. L., Pham, D. M., Phan, K. M., Doan, T. N., Nguyen, T., Tran, T. Medicinal plants and animals in Vietnam, Volume II (first edition). National Institute of Medicinal Materials, House for Science and Technology of Hanoi, Viet Nam, 2006.
  7. But, P., Tam, Y-K, Lung, L-C. Ethnopharmacology of Rhinoceros Horn 1: Antipyretic Effects of Rhinoceros Horn and Other Animal Horns. J. Ethnopharmacology, 30: 1990, 157—168.
  8. But, P., Lung, L-C, Tam, Y-K. Ethnopharmacology of rhinoceros horn. II: antipyretic effects of prescriptions containing rhinoceros horn or water buffalo horn. Journal of Ethnopharmacology, 33:1991, 45—50.
  9. Guilford, G. Why Does a Rhino Horn Cost $300,000? Because Vietnam Thinks It Cures Cancer and Hangovers, 2013. http://www.theatlantic.com/business/archive/2013/05/why-does-a-rhino-horn-cost-300-000-because-vietnam-thinks-it-cures-cancer-and-hangovers/275881/
  10. Csordas, T.J. The Sacred Self: A Cultural Phenomenology of Charismatic Healing. Berkeley: University of California Press 1994.
  11. Csordas, T.J. Body/Meaning/Healing. New York: Palgrave 2002.
  12. Grob, J. A Major Revision of the Discipline on Exorcism: A Comparative Study of the Liturgical Laws in the 1614 and 1998 Rites of Exorcism. Dissertation submitted to the Faculty of Canon Law, Saint Paul University in partial fulfillment of the requirements for the degree of Doctor of Canon Law. 2006: 115—16.
  13. Dermine, F-M. Carismatici, sensitivi e medium. I confini della mentalità magica. Bologna: ESD-Edizioni Studio Domenicano, 2010.

 

Thomas J. Csordas is the Dr. James Y. Chan Presidential Chair in Global Health, Distinguished Professor in the Department of Anthropology, Director of the Global Health Program, and Co- Director of the Global Health Institute at the University of California, San Diego. He has conducted ethnographic research among Charismatic Catholics, Navajo Indians, adolescent psychiatric patients in New Mexico, and Catholic exorcists in the United States and Italy. Among his publications are The Sacred Self: A Cultural Phenomenology of Charismatic Healing (1994); Embodiment and Experience: The Existential Ground of Culture and Self (1994); Language, Charisma, and Creativity: Ritual Life in the Catholic Charismatic Renewal (1997); Body/Meaning/Healing (2002); and Transnational Transcendence: Essays on Religion and Globalization (2009).

Book review: Traces of the Future: An Archaeology of Medical Science in Africa by Damien Droney

21 Juin 2017 - 5:12pm

Traces of the Future: An Archaeology of Medical Science in Africa

Paul Wenzel Geissler, Guillaume Lachenal, John Manton, and Noémi Tousignant, editors

Intellect Ltd./University of Chicago Press, 2016, 256 pages, 500 color plates

 

The first reaction to an encounter with Traces of the Future: An Archaeology of Medical Science in Africa is likely to be a set of questions. Firstly, “what is it?” This 7×9” hardcover book, brimming with pleasingly displayed full-color photographic contributions by 18 authors, resembles a museum exhibit as much as it does a conventional academic volume. The contributing authors themselves describe it as a “sutured assemblage” (12) and a “fragmentary and idiosyncratic” (27) result of collaborative research presented in “a book-like package” (12).

Traces of the Future is the remarkable product of a long-term collaborative research project by a group of anthropologists, historians, and photographers. It examines the legacies of twentieth century biosciences in Africa in five historical sites of transnational medical science. Each of these sites manifested dreams of medical modernity and social progress characteristic of the twentieth century, dreams which are unevenly remembered in these sites today. The book is driven by the diverse research objects that it assembles. Beyond some rewarding orienting essays, the bulk of the book appears as a profusion of material. Each chapter includes an array of images, including fieldwork snapshots, archival documents, blueprints, manuscripts of musical scores, and unearthed beakers. These images are interspersed with timelines, interview transcripts, fieldnote excerpts, quotes from academic literature, and essays.

It also features haunting professional art photographs of Amani Hill Research Station by Evgenia Arbugaeva and Mariele Neudecker. Arbugaeva’s photos, which were previously presented in National Geographic, provocatively reenact mid-twentieth century scenes of science, now staged by retired Tanzanian men of science in dusty laboratories and overgrown gardens. Neudecker pictures Amani in the style of Dutch and Flemish Vanitas paintings that feature prominent symbols of death. These photographs evoke intensities of nostalgia and loss complicated by lasting legacies of exploitation.

One might wonder what a reader is meant to do with such a diverse array of materials. Working through this book produces the same feelings of pleasure and disorientation as pursuing archival research. Is this to be taken as a kit for do-it-yourself analysis, beautifully designed but with some assembly required? Indeed, the introductory essay is presented as a set of instructions for readers-cum-archaeologists who would work through the book’s complicated stratigraphy to excavate futures past. However, the bewilderment is intentional and digging through the collection reveals a volume with powerful and cohesive theories of materiality, affect, and time.

The book approaches the material remains of the past not as clues for reading history or recreating past events, but as the already lively presence of the past in the present. This is thoroughly a study of science in early twenty-first century Africa, often characterized as the period of global health, but it is conducted with a sensitivity toward the traces of twentieth-century scientific activity. These archival documents, items of laboratory equipment, demolished buildings, and re-performances of prior modes of work manifest past orientations toward the future, thereby destabilizing and disarranging (16) present organizations of time, history, and possibility.

As anthropologists rekindle their interest in temporalities outside of the homogenizing time of modernization and progress, this volume dives into the rhythms of life in the late-colonial and early-independence periods of high modernism in Africa. It finds a plethora of timelines, a multiplication of the temporalities of the development era. Indeed, unilineal timelines of development appear as rare accomplishments of synchronization, or temporary harmonizations of temporal experience. The diverse materials presented evoke the entanglements of different periods, but they are presented in such overabundance that they resist letting any single periodization sit undisturbed for too long. Presentist views of medical science are abetted by active processes of forgetting the past, accomplished through the neglect and destruction of materiality. If past temporalities are manifested by their material presence in things, then the destruction of archives represents the death of temporality and the loss of contemporary diversity in ways of doing science. In five multidimensional chapters, the authors excavate surviving relations to time, history, and progress across sites of transnational scientific work.

At Uzuakoli Leprosy Centre in Nigeria, John Manton introduces readers to a site of medical research that once set the international treatment standard for leprosy. However, this medical history is subject to active processes of forgetting as the site’s archives become food for termites. While histories of once globally significant medical science are literally eaten away, surprising cultural legacies live on. The music of Ikoli Harcourt Whyte, a patient-activist instrumental in the founding of the center, continues to be remembered in Nigeria. Excerpts from a radio documentary on Whyte are recorded in the chapter, but despite Manton’s efforts to seek “attunement” with the rhythms of life at Uzuakoli, the liveliness of Whyte’s music is only partially captured by the musical notations left behind.

In the Cameroonian site Ayos, Guillaume Lachenal, John Manton, and Joseph Owona Ntsama find themselves steered onto well-worn paths of commemoration that seek to heroize Eugène Jamot, the French doctor who led the site in the 1920s and 1930s. The authors profile the “monument men” who guide visitors through the memorialized histories of Ayos, focusing on Jamot and the “Jamotains” whom he trained. Such practices of memorialization, they find, mystify the history of the place. In contrast, Ntsama works through documents seeking lively traces of his Jamotain father that depart from the memorialization practices endemic in Ayos. The authors also unearth pasts forgotten by heroic narratives of histories. They trace the site’s founding as a sleeping sickness camp in German Kamerun, headed by a doctor who would become a prominent Nazi racial theorist. In pursuit of these undermemorialized pasts, the authors find oral histories of German-era mass graves that maintain their German place-name. Instead of telling Ayos as a story of Jamot, the savior of Cameroon, the authors reinterpret it as a far more ambivalent site of sacrifice, of death and disposal in the name of progress.

At Amani in Tanzania, Geissler, Ann Kelly, Peter Mangesho, Manton, and René Gerrets excavate the scientific practices and social habits of a colonial hill station. Currently operated by a skeleton crew, Amani has gone through periods of being central to imperial and postcolonial science as well as stretches of near abandonment. In investigating the remains of its mid-twentieth century manifestations, the authors find long histories of transnational entanglement, bringing together British and Soviet scientists with East African colleagues and employees. Alongside unrealized blueprints and cherished photographs, they find spaces marking demolished buildings and the distinctive aesthetics complex of lawns, cars, and gardens that continue to grow, rust, and offer harvest in the twenty-first century. The most striking episode of this chapter deals with the uncomfortable reenactments of mid-twentieth century science involving a retired British entomologist and his Tanzanian former assistants. These reenactments end up performing the complicated intertwining of racial segregation, intimacy, and paternalism of the late colonial period in the present moment, clarifying the resonance of those dynamics today while unsettling stable depictions of temporality.

Noémi Tousignant introduces readers to Niakhar. This Senegalese site has been the object of demographic observation since the 1960s, initiated by the Senegalese government and administered by the French Institute for Development Research. Tousignant interprets this demographic work as a form of memory-making, producing documentation through repeated observation. The memories of these past encounters break into the present in the form of material traces of scientists, but also in popular forms of recollection. Indeed, Senegalese researchers recall diverse forms of engagement and interaction with communities of study, while children born in the area bear the names of past researchers. This chapter explores the continued life of research archives, as well as their planned-for obsolescence. It describes the interplay between private and institutional possession of archival materials, as well as the reemergence of archival data and the disposal of demographic material that has lapsed into presumed irrelevance.

Finally, Geissler and Ruth Prince examine three institutions in Kisumu, a city in Kenya that has long been an important site of transnational research. They delicately trace memories of past science alongside current incarnations of research. Presented in the chapter are ethnographic descriptions and historical newspaper accounts of “Russia,” a hospital funded by the Soviet Union. This hospital became the place of state violence at its opening ceremony in 1969, when first head of state Jomo Kenyatta’s presidential guard opened fire on Soviet-aligned opposition supporters. “Russia” is (strikingly) now home to research funded by the US National Institutes of Health. The authors also visit the Kenya Ministry of Health’s Division of Vector-Borne Diseases, where Geissler himself conducted parasitology research in the 1990s. The government division reinvented itself following the structural adjustment of the 1980s to embrace transnational projects, moving from contract to contract to fund research activities. Today, the division operates at minimal capacity, waiting for a new project to restart research. Finally, the parastatal Kenya Medical Research Institute has become the new partner of these international research projects, reordering their research priorities to accommodate the NIH. This chapter senses the traces of older patterns of science in Kisumu that were consonant with promises of full employment, populist understandings of citizenship, and utopian visions of the future, but also with authoritarian government and state violence. These forms of science are remembered by many, but they are also subject to active processes of forgetting promoted by current global health initiatives with narrower visions of development.

The hermeneutic strategy of this book is to multiply objects of analysis, to place them in relation to each other in ways that facilitates interpretation but discourages pat conclusions. The volume makes effective use of juxtaposition. The authors point out that new American NIH funded research is housed in buildings that signal earlier Soviet and Panafrican research orientations. Quotes from Beckett’s Waiting for Godot stand alongside the activity schedule of a practically deactivated government research division. Alongside past manifestations of science, global health appears antagonistic towards memory, invested in forgetting prior modes of science as it embraces relatively narrow visions of development with different fault lines of inequality and exclusion.

Just as striking, however, are those remnants of past science that seem indifferent to existing narratives of history altogether. It is hard to put together a narrative of scientific progress, colonial trauma, or postcolonial promise based on the materials presented. Embraceable visions of progress remain elusive in this book, as do smoking-gun depictions of colonial violence. From the rumored excavation of mass graves at Ayos to the “man-baiting” of biting insects at Amani, one wonders how scientific practices reenact and amplify other colonial traumas. Likewise, the book does not pin down familiar topics of analysis such as race, class, or gender in ways that offer concrete takeaways, but an active reader would find more than enough on those topics.

In an epilogue, Iruka Okeke asks about the histories left out of this archaeology of medical science, wondering how a consideration of the legacies of African-led research in African universities could provide often-overlooked grounds for excavating futures of African science. Indeed, this excavation of the affective life of science in sites that hosted transnational research projects in the mid-twentieth century should inspire an attunement to the intensities and possibilities of science outside of its presumed epicenters. As the authors write about the unrealized promises of Amani Hill Research station, “it never quite becomes home, it never really changes itself or the world, and eventually one must leave it” (111).

This book makes original, invigorating contributions to scholarship on the colonial heritage of science, the history of transnational research collaborations, and African medical sciences. It is also recommended for those interested in mid-twentieth century narratives of progress. It shows the multiplicity of these timeliness, presenting material as an accumulation of traces heaped up in the contemporary moment, fertilizing contemporary discourse about the future. Perhaps its most distinctive contribution is to the practice and presentation of qualitative research. Those interested in experimental ethnography, ethnographic archaeology, collaborative research, and novel modes of representation should find much to grapple with. Those interested in affect, nostalgia, or ruins will find a fresh and rewarding treatment of these nodes of analysis. Indeed, each chapter works to resist trope, following the productive discomfort of not hearing familiar stories or, just as discomfiting, hearing too many stories to summarize. This book gives the reader too much provocative material to construct a stable narrative about the past, but perhaps just enough to tell some new stories about the future.

Damien Droney is a lecturer in the Department of Anthropology at Stanford University where he works in medical anthropology, science & technology studies, and African studies.

Stakes of Life: Science, states, policies, publics and ‘the first thousand days’ by Fiona C. Ross

19 Juin 2017 - 7:16pm

Welcome back to the “First Thousand Days of LifeSomatosphere series. Here we continue to explore the ways that a global health initiative driven by new findings in epigenetics and neuroscience and by a reframing of theories about health and disease in terms of developmental origins shape ideas about (global) health and population futures, invigorate campaigns, and take form and settle in localized contexts. Understanding the links between science, biomedicine, policy, population, well-being and relationship as simultaneously both meshed and contingent, our series posits questions about what affordances and limitations lie in new modalities of understanding human illness and well-being. It examines how policy is made and with what effects for its recipients, how states are implicated in health and its others, what forms of the everyday materialize under the lens of new findings in epigenetics and epidemiology, what modalities of knowing emerge and how they settle with older forms, and how ethnography might contribute.

Describing the research programme driven by the Thousand Days research group at the University of Cape Town, I noted that,

The emergent field both synergises a range of disciplines in the bio- and social sciences and develops new sites of humanitarian intervention, reframing current debates about population, well-being and ‘the best interests of the child’ in newly biological ways. As these findings are taken up in policy and practice, we are witnessing the making of a social object with material effects’ (www.thousanddays.uct.ac.za).

Our project has explored that making, its prior conditions and its effects.  As Michelle Pentecost noted in her opening to the Somatosphere series, the framing ‘offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well-being but also how life is conceptualized by different disciplines.’  We have traced both the ways that medical and scientific knowledge about life come to be interpolated in everyday worlds and the ways that people engage with, respond to – or indeed, ignore and subvert – it as they grapple with the possibilities that reproductive worlds afford. Our stance is deliberately invested in how everyday lives are made, and how scientific knowledge and the policies it enjoins are folded into those lives. We have traced how new knowledges, particularly in epigenetics, are rendered into policy and state practice, and come to shape imaginaries not only of individual lives but of population futures. In the process, they materialize certain kinds of relations (embodied, physiological, maternal) as more significant than others, and these in turn have the effect of producing a powerful and sometimes punishing discourse of, among others, the good mother, the responsible citizen and the expert.

Earlier contributions to the series trace questions of birthing, medicalization, nutrition and care. They offer grounded accounts from Southern Africa of the ways that different forms of knowing take root in everyday practices associated with reproduction. Contributors explored the formation of the field (Pentecost); worlds of birthing (McDougall, Rogerson, Ferreira); nutrition, nourishment and care (Truyts, Waltz, Ncube). These projects demonstrated the interwoven nature of imperative; the ways that the state understands and frames the imperative to act, to care, to intervene. They spell out the ways that ordinary practices of child-bearing and rearing are shaped by knowledge practices and histories that produce certain populations as sites for medical and pastoral intervention and run the risk of replicating older colonial practices even as they institute new forms of power.

In this second part of the series, we deepen these themes.  The framing of the first thousand days of life is, above all else, a way of imagining individual and population futures. Intervention during pregnancy and early childhood is anticipated to have lasting impacts on individual well-being and to carry those through to the next generation. Laudable in their intention, the interventions we have traced in South Africa have not fully grasped the uneven terrain on which sociality is built; the historical shaping of individual lives and collective futures. The effect is that policy imagines an ahistorical individual who will receive and implement the ministrations of experts in particular kinds of knowledge. By contrast, we have been concerned to show the ways that understandings about life are multivectoral, drawing on a range of repertoires that include but are not limited to biological notions. Our work suggests that it is important to understand the ways that ‘the biological’, its pasts and futures, is constituted as a social fact through a range of agencies; states, educational institutions, scientific imaginaries, technologies, policies and the everyday encounters that shape both how we come to inhabit a shared form of life and how we understand it.  It suggests also that it is critical to understand the stakes of life for different players.

As the global campaign around the First Thousand Days deepens and is taken up in a variety of sites and states, we continue to explore the meanings that are generated in specific locales, always understanding these to be globally inflected (and sometimes to be global nodes themselves – cf. Pentecost 2017).  We are committed to developing modes of analysis that are reflexive and reflective of Southern African contexts.

This series extends work on reproductive and birthing worlds. It also takes up the theme of the state, asking how and in what ways the state is implicated in reproduction and population futures. In so doing, it asks us to consider how the state materializes (for) families, women of childbearing age, those responsible for reproduction and care, and so forth. It also asks us to consider the ways that state and population are imbricated in contemporary African postcolonies.  Drawing inspiration from Poole and Das’s (2004) interrogation of ‘the margins of the state’, we ask how life is constituted in domains in which the state imagines itself – or is imagined – to have considerable sway and responsibility even as its reach is limited or fractured. Our commitment remains to fine-grained ethnographic accounts that draw from and may put pressure on theories ‘from the north’ by offering accounts from and of Southern Africa.

The First Thousand Days: A South African Example

South Africa has not yet met its MDGs or SDGs in relation to maternal, infant and under-five morbidity and mortality (StatsSA 2015), which remain very high despite the (uneven) medicalization of reproduction. Critical of a formulation that focuses on child survival as ‘a health issue’, while ‘ignoring the wider social and economic determinants of health’ (2015:17), the StatsSA report on the MDGs notes, ‘There has … been insufficient recognition and operationalisation of a multi-sectoral response designed to address the social and economic, and not only medical, determinants of child survival’ (2015: 18).

As of 2013, nutrition policy in South Africa explicitly focuses on ‘the first thousand days of life’.  Derived from the SANHANES report (2013), a nationwide health and nutrition survey which found that while decreasing, rates of infant malnutrition and stunting remain unacceptably high, with devastating consequences for individual well-being, ‘national development’ and population developmental outcomes, the policy aims to put in place mechanisms to intervene in population malnourishment.   In the Western Cape, the province in which I work, this policy has been augmented by a campaign aimed simultaneously at medical practitioners in public health facilities and at their clients.  The First 1000 Days campaign, launched on 17 February 2016, by the Western Cape Department of Health, in partnership with the Department of Social Development (see Figure 1), is an attempt to develop the kind of a multi-sectoral approach envisaged by the critique of the MDGs.  It seeks to ameliorate maternal and infant well-being and to augment existing policies on health care provision for these categories with a wider campaign that will, among other things, teach beneficiaries proper nutrition, offer support for early childhood development, provide parenting skills, and address apartheid’s legacies that continue to manifest in poor infant and maternal outcomes.

Figure 1: Campaign Logo. Source: https://www.westerncape.gov.za/general-publication/first-1-000-days-campaign

The campaign extends the 2013 nutrition policy, adding two further elements: ‘love and attention’ and ‘play and stimulation’. The campaign website states: ‘We believe that the first 1000 days in a child’s development, starting from conception, moving through pregnancy, birth, and after the first 2 years of life, are crucial for securing a child’s bright future.’  The slogan, replicated here, is a directive and injunction. Its dense imagery, resonant with some of the SDG symbols symbolizes nutrition, love and learning within a directed period. It has moral force and offers a clear set of temporal framings.  The poster on which it appears foregrounds the mother-child dyad as the site of intervention while also drawing on wider networks, such as fathers and ‘communities’.  It includes the logos of both Departments of Health and Social Development, along with hotlines for substance abuse, violence and abuse, early childhood development, and health-related queries. In other words, this intervention clearly stages the state, particularly in its manifestation as those sectors responsible for health and social well-being, as a key agent in what is often imagined as the private work of social reproduction, and it simultaneously positions the state as arbiter of expert knowledge and source of advice.

I suggest that, like other campaigns elsewhere in the world (Thurow 2016), this project seeks to instantiate a new form of life; a new set of agreements about what it is to be properly human. It has two key objectives, temporally-oriented; the goal of improved population health beyond the individual, or indeed, this generation – thus, an orientation to the future – and a recognition of the pasts that continue to shape access to health care and to produce inequitable health outcomes. An implicit assumption is that people need to be educated, and that the people who need to be educated are mothers.  While the campaign has worked to include ‘fathers, families, and the community’ in its remit, and has initiated an advertising campaign (for example, offering signage in commuter taxis), the maternal-child dyad is nevertheless the core target and most interventions are targeted at women. There are several reasons for this. This focus on the maternal body and the mother-child dyad has diverse origins: a highly medicalized birthing sector (see Rogerson, Ferreira, McDougall in earlier contributions to this series); the impact of HIV/AIDS and, vertical transmission in particular, on health care policy; and, more broadly, the ways that here, as elsewhere (see Richardson 2015), the maternal body is envisaged as an ‘environment’.  It is influenced too by the gender normative framing of family that pervades South African policy implementation, despite the 2012 White Paper on Family’s commitment to recognizing the diversity of families in South Africa. Another, in the fact that the maternal body is the state’s closest point of contact with ‘family’, both through health policy and in the de facto distribution of the state’s Child Support Grants.

The 1000 Days Campaign makes human ends (such as love, play, social interaction) the means through which population well-being is secured. In other words, social worlds and human relations are instrumentalised to population ends.  The campaign is a classical illustration of neoliberal risk discourse: it identifies a population, duratives, a set of tools and an effect. However, despite economic policies that are broadly neoliberal, South Africa is not a neoliberal state and its health policies are not fully biopolitical.  (National government holds a welfarist stance, as evidenced, for example, in the allocation of state grants to more than 16 million people.) Nevertheless, there are aspects of surveillance and intervention that social scientists have come to identify as having biopolitical roots, in particular, a re-responsibilising of women as bearers of life and as mothers.  I say ‘re’-responsibilising here because there is a far longer history of holding women, particularly African women, responsible for reproductive well-being (see Pentecost and Ross, n.d.; Pentecost 2017); a history that traces its origins to concerns about kwashiorkor in urbanizing areas in the 1950s, and more recently to the problem of mother-to-child (vertical) HIV transmission. Meloni and Testa (2014: 445) have noted that, as a field, epigenetics gives rise to ‘an expansion of the concept of responsibility’, ‘fostering the materialization of new bonds among generations’ (italics in original).  Given the disruption to generational relations caused by HIV and the state’s dilatory response to it until 2004, the nature, form, capacity and power of responsibilisation to re-generate kinship remains to be seen.

Our work shows that ‘new’ epigenetic findings continue to rest on understandings of the maternal body that have longer histories, and that embed normative Eurocentric ideas of both the body and the maternal role, and that increasingly instrumentalise human relations, including affects, desires and play, to population ends. This suggests to us that ‘the maternal’ as it appears in policy is ‘a knowledge effect’; a product of a specific way of thinking about an issue or problem. Here, the problem is the future well-being of the population and the means to accomplish it. It seems to us that it is materializing in what Andrew Hartnack (2016) has identified as a form of biopolitics characterized by maternalism; a form of power that has a long (although relatively under-acknowledged) colonial genealogy. Such modes of governance are unevenly distributed and mesh with intense forms of patriarchal control in different contexts. These produce uneven effects across provinces and national boundaries.

In the introduction to their recent book, Living and Dying in the Contemporary World, Clara Han and Veena Das (2015: 2) make the critical point that questions of life, once the domain of philosophy, humanities and related fields, have become reductionist in their material focus. They argue that narrowing down the notion of life to biological life alone has drawn a boundary between more classical questions about life… and the so-called new questions that assume that unless the prefix bio- can be added to a concept, that concept becomes irrelevant to our contemporary conditions.

Their examination seeks to undo the privileging of biology in understanding ‘newness’. They suggest that the new is ‘embedded in and transforms ‘older forms’ and, offer, through an exploration of singularity, a way to arrive at the question of how to pay attention to the fragility of life – including the forms of agreement we make in and of it. We hope that the next contributions to the series does justice to their call.

 

References

Han, Clara and Veena Das. 2015.  Living and Dying in the Contemporary World: A Compendium.  University of California Press. Berkeley.

Hartnack, Andrew. 2016.  Ordered Estates. Weaver Press. Zimbabwe.

Meloni, Maurizio and Giuseppe Testa. 2014.  ‘Scrutinizing the epigenetics revolution’. BioSocieties, 9:431-56)

Pentecost, Michelle and Fiona C. Ross.  The first thousand days: temporalities of motherhood in South Africa. (under review).

Pentecost, Michelle. 2017. The First Thousand Days: Global Health and the Politics of Potential in Khayelitsha, South Africa. Unpublished PhD dissertation, University of Oxford.

Poole, Deborah and Veena Das. 2004. Anthropology in the Margins of the State. School of American Research Press. Santa Fe.

StatsSA. 2015. Millenium Development Goals Report. Statistics South Africa. Pretoria.

Thurow, Roger. 2016.  The First 1,000 Days: A crucial time for mothers and children – and the world. Public Affairs. New York.

 

Professor Fiona C. Ross holds the AW Mellon Chair in the Anthropology of the First Thousand Days of Life and is the Head of Section in Social Anthropology at the University of Cape Town. Her research explores the making of children as social beings; the crafting of childhoods; and the constitution of the child’s social world in Southern Africa. Her previous publications explore the effects of violence and redress in South Africa and include Bearing Witness: Women and the Truth and Reconciliation Commission in South Africa (2002. Pluto Press: London) and Raw Life, New Hope: Decency, housing and everyday life in a post-apartheid community (2010. UCT Press: Cape Town). For more information click here – See more at: http://www.thousanddays.uct.ac.za/1000days/people#sthash.UzaHrQ0q.dpuf

Making the theoretical practical: Engaging undergraduate students in research methods by Hannah Mohammad

14 Juin 2017 - 7:09pm

I am currently an undergraduate student in the Department of Global Health & Social Medicine at King’s College London. The Department’s UG program offers students the opportunity to study social aspects of health and medicine in a multi-disciplinary context with close collaboration between the social sciences, life sciences and biomedicine. In addition, a great emphasis is put on methods training to equip students to carry out their own empirical research projects.

Already in first year, the Research Practice and Design Studio course taught us theories and practices required for qualitative and quantitative research. However, in our undergraduate bubble, these late Tuesday afternoon sessions seemed somewhat distant from conducting actual research. In order to address this perceived disconnect, our course instructor, Dr Laurie Corna decided to adopt a problem-based learning approach that allowed us students to be positioned as emerging researchers whilst learning theoretically about a range of issues central to quantitative and qualitative research designs.

A new research methods course was designed around a series of case-based learning activities that culminated in students conducting their own mixed-methods research. Students’ assignments for the course involved working in teams of two on applying and executing various aspects of the research process in relation to the predefined topic “Physical activity in the city of London”.[1] That is, we learned how to articulate research questions, identify ethical problems, write a research proposal and develop related interview topic guides as well as survey questionnaires. Once we had conducted our research, we were tasked to present our findings in the form of a poster during a “Research Showcase” and create a final report on the research project. Through such an interactive approach to teaching and learning, we were provided with practical exposure to conducting research, dissemination and presenting skills relevant within and beyond the classroom. Moreover, since the Research Showcase was student led and responded to feedback from previous first-year students, it fostered greater engagement between students and their teachers.

As undergraduate students, we found that conducting our own research project early on in our education was a unique experience, providing an opportunity for us to practically apply theoretical knowledge. Also, we considered it really important to not only learn to gather data, but also to disseminate them since we were aware that this is a core skill needed in academia and beyond (i.e. when working in NGO or government sectors). In particular, the Research Showcase taught us to present, explain and discuss our research findings. Yet, what was missing was a “real” conference feel and, thus, we decided with Dr. Corna to apply for funding from the College Teaching Fund to organize, together with the new first-year cohort, a professional and public Research Showcase.

 

Planning the Research Showcase

As second-year students, we were in a unique position to assist in the development of such a professional and public Research Showcase as we had first-hand experience of organizing a similar event on a smaller scale. Dr Corna and her colleagues placed us at the center and allowed us to assist with the planning and execution of the event. For example, I was involved from the initial project development stage, which provided the opportunity to understand the mechanics of writing a successful grant proposal. Later in the year, I was joined by another second-year student along with volunteers from the new first-year cohort in order to shape and organize a Showcase that reflected our and our fellow students’ interests.

The heart of this project formed the collaboration between the student organizers, lecturers and students on the research course. Through regular meetings, students from different year groups were able to interact and share ideas with input from academics, providing a reminder of the budgetary constraints to our often over-the-top plans. Meeting regularly allowed for discussions on the intricate planning details from inviting prominent keynote speakers to organizing logistics and coming up with interactive activities for the day. Moreover, to create an interactive learning environment between first-year students and Showcase organizers, a Facebook group was set up and updated with information about the Showcase and advice on conducting research. This was in addition to second-year students providing examples related to our research projects from the previous year and co-teaching a session on poster preparation and presentation.

 

The Research Showcase

Our Showcase took place on 18th March 2016, bringing together students and academics from across the faculty for an afternoon of interdisciplinary presentations, discussions and exchanges. The Showcase began with a panel event on “Urban Health” featuring prominent academics including Professor Anthea Tinker, discussing her work on how London must adapt to meet the needs of an ageing city; Dr Stephani Hatch from the Institute of Psychiatry, Psychology and Neuroscience presenting her research on urban mental health in South London and Dr Jenny Mindell from University College London’s Transport Institute speaking about the relationship of travel modes, health and community severance. These presentations allowed students to see how research is presented professionally in academia and what its impacts on the real world can be.

Following the panel and lively discussion, the poster presentation began with students presenting their posters to a college-wide audience. On the one hand, this gave students the opportunity to discuss their experiences of conducting research and forge connections with academics from across departments. At the same time, their posters and presentations were marked by department staff based on criteria such as content, key poster elements, clarity of presentation, and structure as well as ability to answer questions and presentation style which added to the buzz and excitement. Once all posters were discussed and marked, presenters and the audience shared a meal together, systematically evaluated the event and finally participated in an interactive Global Health quiz that had been developed by the Showcase organizers using the online platform ‘kahoot’ with prizes for the winners.

 

The student evaluations showed that students particularly appreciated the opportunity to engage with academics and researchers; someone wrote that it was exciting to be ” able to engage with researchers and see how the research we did was similar and relevant to the research they’re doing in the real world. Also the involvement of other members of the staff from the faculty was interesting in terms of them providing different views on the issues we looked at”. Others highlighted the positive experience of learning about methods not only in a theoretical way, but rather through actual practice or, in the words of one of the students: “being able to put the skills we learnt into practice and then being able to discuss our work with researchers who gave their own opinions and perspectives”. Importantly, it was also highlighted how the event fostered a sense of achievement and community through a pleasant and buzzing atmosphere. A student noted: “great atmosphere, really social and relaxed and it ensured you actually put your skills to use and not to waste”. However, others would have liked even more involvement of teaching and research faculty in the event stating that it would be great had there been more people involved from other departments “to share different perspectives on the topic”. All in all, the Showcase felt like a great achievement that combined, theory and practical skills with community building and enjoyment.

 

Hannah Mohammad is a final year BSc Global Health & Social Medicine Student at the Department of Global Health & Social Medicine, King’s College London. Her research interest focuses on the social determinants of health and the ways in which these impact on refugee health, infectious diseases and health technologies. Her final year thesis is on the politics of primary healthcare for refugees and asylum seekers. She is Co-President of the King’s College London Global Health Society.

The “Experiments with pedagogy” series is edited by Hanna Kienzler.

 

Acknowledgements

I would like to thank all the first-year Global Health & Social Medicine undergraduate students for being active participants throughout the process of planning and delivering the research Showcase. Particularly so to the four student volunteers who helped in organising the Showcase; Deborah Fabiyi, Robert Smith, Emily Allchin and Diane Tuan. I would also like to thank my fellow second-year research assistant Saida Sheriff and a special thank you to Laurie Corna and Hanna Kienzler for supporting us throughout the project, and Laurie for delivering the research module and creating the Showcase. Funding for carrying out the event was received from the College Teaching Fund (King’s College London).

 

[1] The decision to delimit the research field was due to the fact that it enabled Dr Corna to get group-based ‘ethics approval’.

Book Forum–Elizabeth A. Wilson’s Gut Feminism by Alexandra Sarkozy

12 Juin 2017 - 7:08pm

Elizabeth Wilson’s Gut Feminism revisits feminism’s traditionally antagonistic engagement with biology with a call to reposition the body in feminist thought. As Wilson critically explores relationships between guts and melancholia, pharmacokinetics and bile, psyche and soma, she generates tools and insights for a new feminist reading of biology, and articulates the role of aggression as a necessary condition for feminist politics. These commentaries tease apart and extend aspects of Wilson’s arguments, each one metabolizing the pill to produce transformed understandings. We hope you enjoy!

 

Comment on Gut Feminism
Des Fitzgerald
Cardiff University

Incisive Gutting – and Tolerating a Capacity for Harm
Megan Warin
University of Adelaide

A Strange Kind of Sad
Harris Solomon
Duke University

Stomachaches
Amber Benezra
New York University

A reply
Elizabeth A. Wilson
Emory University

 

Download pdf of book forum

In the Journals – May 2017 by Livia Garofalo

1 Juin 2017 - 8:02pm

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards. Critics also point out that vulnerability frameworks elude measure, strip people of agency, and reify stereotypes of the Global South. In light of both the historical importance and the sustained critiques of the concept, this chapter looks to anthropological and related literature to explore several questions: is it possible that vulnerability has outlived its usefulness? Is it still analytically meaningful for anthropologists currently working in the area of risk, hazards, and disasters? And what are the potential consequences or benefits that could come with conveying the concept of vulnerability to policy and decision makers?

 

Resilience: A commentary from the vantage point of anthropology

Roberto Barrios 

In recent years, the concept of resilience has gained popularity as a means to describe the qualities and capacities that enable a community to recovery from a catastrophic event. Definitions of resilience make a number of assumptions about the nature of communities and the practices that enable their ability to cope or weather a disaster’s impact. In this article, I provide a brief history of the ways disaster researchers have defined resilience and provide an analysis of the fundamental assumptions upon which such definitions are based. Furthermore, I provide a critical analysis of such assumptions in light of anthropological knowledge about the relationships and processes that put communities on the map, shape the ways they are exposed to hazards, and their possibilities for recovery. In conclude by providing four recommendations for practice which stress 1) the recognition of disaster has a historically shaped process involving development practice and human-environment relations, 2) the recognition of the broader political ecological relationships that shape resilience, 3) an emphasis on systemic transformation rather than locality specific interventions as a means of resilience-building, and 4) a prioritization of subaltern voices in operationalizations of “rebuilding better” as a mechanism for addressing the practices of environmental injustice that routinely give form to disaster vulnerability and those conditions that are branded “low resilience.”

 

Cultural Anthropology  (open access)

Special issue on Affect

A Clinical Economy of Speculation: Financial Trading and Gambling Disorder in Spain

Jorge Núñez

This article concerns itself with financial traders in Spain who have been diagnosed with gambling disorder. It analyzes what I call the clinical economy of speculation, in which the category of problem gambler is repurposed to draw new lines around proper financial trading. In exploring the expansion of post–financial crisis regulatory mechanisms for credit and debt, as well as widening inequalities across the field of investment, I depict how both traders and clinicians become invested in medicalizing trading as gambling disorder. My theorizing interrogates whether and why common speculative practices are seen as sick and unsafe when everyday people, instead of banks and other financial institutions, perform them. I argue that the pathologized trader is an attempt to regulate, at the individual level, the increasing use of borrowed capital to make financial profits. The commodification of debt, however, is not a gender-neutral development. Female traders pay a greater price for venturing into the heights of finance. This focus on gender brings into view the redefinition of credit and debt within the domain of trading, and shows the role of debt-fueled financial speculation in the expansion of financial markets. These ethnographic findings are particularly relevant in a country like Spain, where the Great Recession has bred more new millionaires than ever before, even as the smaller fish of the economy are being medicalized and sometimes even incarcerated.

 

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

‘Am I really gonna go sixty years without getting cancer again?’ Uncertainty and liminality in young women’s accounts of living with a history of breast cancer

Sophie Rees

Although much research has examined the experience of breast cancer, the distinctive perspectives and lives of young women have been relatively neglected. Women diagnosed with breast cancer under the age of 45, and who had completed their initial treatment, were interviewed, and social constructionist grounded theory methods were used to analyse the data. The end of initial treatment was accompanied by a sense of unease and uncertainty in relation to recurrence and survival, and also fertility and menopausal status. The young women’s perceptions about the future were altered, and their fears about recurrence were magnified by the possibility of many decades ahead during which breast cancer could recur. The implications for the young women’s life course, in terms of whether they would be able to have children, would not become clear for several years after initial treatment. This resulted in a liminal state, in which young women found themselves neither cancer-free nor cancer patients, neither pre- nor post-menopausal, neither definitively fertile nor infertile. This liminal state had a profound impact on young women’s identities and sense of agency. This extends previous understanding of life after cancer, exploring the age-related dimensions of liminality.

 

‘Why worry about something you can’t control?’ Negotiated risk, longevity and health behaviours

Rebecca Llewellyn, Wayne Cunningham, Chrystal Jaye, Jessica Young, Richard Egan, Peter Radue

While we know about lay attitudes towards death and dying, we understand little about the ways people estimate their overall personal risk of life-limiting disease and/or death. This study contributes to the limited literature on lay longevity reckonings, with a particular focus on how these reckonings may influence health behaviours. Semi-structured interviews were held with 21 young older adults (54–65 years), addressing the core questions of ‘What do you think you will die from, and how long do you expect to live?’ Participants indicated their longevity estimation was guided by three key frameworks: family history, environment and lifestyle factors and lived experience. The reckoning process was also moderated by assumptions about loci of control and self-efficacy and the information available to participants. A tripartite model of death risk assessment is proposed, extending the idea of ‘negotiated risk’ beyond the scope of family history where it has received most attention. We argue that by drawing on the three risk-assessment frameworks, determining patients’ predisposition for external/internal attributions of control and perceptions of self-efficacy, clinicians will be better equipped to understand – and thus guide – patients’ reckonings of longevity and health behaviours that are influenced by it.

 

‘Naloxone works’: The politics of knowledge in ‘evidence-based’ drug policy

Kari Lancaster, Carla Treloar, Alison Ritter

For over 20 years, drug policy experts have been calling for the wider availability of naloxone, to enable lay overdose witnesses to respond to opioid overdose events. However, the ‘evidence base’ for peer-administered naloxone has become a key point of contention. This contention opens up critical questions about how knowledge (‘evidence’) is constituted and validated in drug policy processes, which voices may be heard, and how knowledge producers secure privileged positions of influence. Taking the debate surrounding peer-administered naloxone as a case study, and drawing on qualitative interviews with individuals (n = 19) involved in the development of naloxone policy in Australia, we examine how particular kinds of knowledge are rendered ‘useful’ in drug policy debates. Applying Bacchi’s poststructuralist approach to policy analysis, we argue that taken-for-granted ‘truths’ implicit within evidence-based policy discourse privilege particular kinds of ‘objective’ and ‘rational’ knowledge and, in so doing, legitimate the voices of researchers and clinicians to the exclusion of others. What appears to be a simple requirement for methodological rigour in the evidence-based policy paradigm actually rests on deeper assumptions which place limits around not only what can be said (in terms of what kind of knowledge is relevant for policy debate) but also who may legitimately speak. However, the accounts offered by participants reveal the ways in which a larger number of ways of knowing are already co-habiting within drug policy. Despite these opportunities for re-problematisation and resistance, the continued mobilisation of ‘evidence-based’ discourse obscures these contesting positions and continues to privilege particular speakers.

 

‘You feel like your whole world is caving in’: A qualitative study of primary care patients’ conceptualisations of emotional distress

Adam WA Geraghty, Miriam Santer, Samantha Williams, Jennifer Mc Sharry, Paul Little, Ricardo F Muñoz, Tony Kendrick, Michael Moore.

General practitioners are tasked with determining the nature of patients’ emotional distress and providing appropriate care. For patients whose symptoms appear to fall near the ‘boundaries’ of psychiatric disorder, this can be difficult with important implications for treatment. There is a lack of qualitative research among patients with symptoms severe enough to warrant consultation, but where general practitioners have refrained from diagnosis. We aimed to explore how patients in this potentially large group conceptualise their symptoms and consequently investigate lay understandings of complex distinctions between emotional distress and psychiatric disorder. Interviews were conducted with 20 primary care patients whom general practitioners had identified as experiencing emotional distress, but had not diagnosed with major depressive disorder. Participants described severe emotional experiences with substantial impact on their lives. The term ‘depression’ was used in many different ways; however, despite severity, they often considered their emotional experience to be different to their perceived notions of ‘actual’ depression or mental illness. Where anxiety was mentioned, use appeared to refer to an underlying generalised state. Participants drew on complex, sometimes fluid and often theoretically coherent conceptualisations of their emotional distress, as related to, but distinct from, mental disorder. These conceptualisations differ from those frequently drawn on in research and treatment guidelines, compounding the difficulty for general practitioners. Developing models of psychological symptoms that draw on patient experience and integrate psychological/psychiatric theory may help patients understand the nature of their experience and, critically, provide the basis for a broader range of primary care interventions.

 

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

Julia Frost, Jane Grose, Nicky Britten

This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of ‘normality’ and existent social roles for as long as possible, but this ethos can negate both one’s ability to self-manage and the management of self.

 

An exploratory study of the experience of fibromyalgia diagnosis in South Africa

Silvie Cooper and Leah Gilbert

Within the conceptual framework of ‘medically-ill-defined’ conditions, this article focuses on the experiences of ‘diagnosis’ through a narrative analysis of fibromyalgia (a chronic musculoskeletal pain disorder) in South Africa. In-depth interviews were used to collect narratives from 15 participants. The findings show how the contested and confusing experience of fibromyalgia diagnosis can be understood, by viewing the interactions that patients have with their practitioners, families, peers and colleagues. The currency of fibromyalgia as a diagnosis and the inequalities present in the South African health care system characterise the experiences of symptom recognition, diagnosis and treatment. The analysis reveals how those living with fibromyalgia search for diagnosis, and struggle to maintain legitimacy for their experience in the complex constellation of porous symptoms that appear infrequently. The findings of this study confirm the existing evidence that shows fibromyalgia to be a challenging illness experience, which is attributed to the lack of clarity and legitimacy, and high contestation that surrounds the condition. Additionally, this study presents the ways that limited access to diagnosis and treatment for fibromyalgia in the South African context shapes this specific illness experience, and the value of using narrative approaches to gain insight into how people live with hidden and poorly understood conditions in this environment.

 

Health and Place

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

Roberta L. Woodgate, Melanie Zurba , Marie Edwards , Jacquie D. Ripat and Gina Rempel

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the ‘embodied space of care’. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.

 

The ward as emotional ecology: Adolescent experiences of managing mental health and distress in psychiatric inpatient settings

Paula Reavey, Jason Poole, Richard Corrigall, Tony Zundel, Daniel Byford, Sarah Sarhane, Mandy Taylor, Eric Taylor, John Ivens, Dennis Ougrin

Previous research on young people’s satisfaction of inpatient services has often relied on the responses of carers and relevant practitioners. It is difficult to ascertain to what extent such reporting accurately represents the satisfaction levels of young people, with emerging research suggesting wide discrepancies. As part of a wider study evaluating the effectiveness of a Supported Discharge Service (SDS) operating within South London & Maudsley NHS Foundation Trust, this paper examines how young people experience inpatient services, on a social and emotional level. Twenty young people, (10 SDS and 10 TAU) participated in a semi-structured visual-interview study to examine their experiences of admission, ward-life and treatment. A thematic decomposition analysis was conducted on the data and specific themes relevant to satisfaction and engagement with inpatient services was examined in-depth. These include a) Behavioural surveillance as care surrogate and b) Managing the delicate emotional ecology of the ward: openness, triggering, sterility and relational engagements. Finally, we explore some of the implications of these inpatient experiences for supported discharge services.

 

“They treat us like we’re not there”: Queer bodies and the social production of healthcare spaces

Talia Meer and Alex Müller

There is significant literature demonstrating the interpenetrability of identity and space, yet there is almost no work that explores the co-production of queer identities and healthcare spaces. We use Lefebvre’s triad of (social) space to explore how the social spaces of South African healthcare facilities shape and are shaped by queer service-users, drawing on data from interviews and focus group discussions with 29 queer service-users and 14 representatives of organisations. Findings reveal that healthcare spaces are produced by the spatial ordering of health policy inattentive to queer health needs; the enduring symbolic representations of queerness as pathological or ‘un-African’; and various identity assertions and practices of individuals, including queer service-users and healthcare providers. As a result, healthcare spaces are overwhelmingly heteronormative, although queer service-users’ subversive practices suggest alternative spatial configurations. However, such resistance relies on individual empowered action and risks disciplining responses. Wider efforts are needed to transform the material and ideological space of healthcare facilities through law and policy reform and continuing professional training for healthcare providers.

 

A place for the heart: A journey in the post-asylum landscape. Metaphors and materiality

Inger Beate Larsen and Alain Topor

The downsizing of psychiatric hospitals has created a new institutional landscape in the local community to support people with severe mental problems in their daily living. This study explores meeting places in Norway from the users’ perspectives. The users used four metaphors to describe these meeting places: “like a home”, “like a family”, “like a landing ground” and “like a trampoline”. The users have decorated the interiors of the meeting places with hearts made from various materials, and these could be considered as symbols of the places. The metaphors used: the hearts and the rooms and interiors, reflect old ideas about calmness and dignity rather than new ideas based on New Public Management.

 

The strategic geographies of global health partnerships

Clare Harrick

Global health partnerships have been hailed as a means of addressing the global health worker shortage, bringing forth health systems strengthening and, therefore, the universal health coverage aspirations of the Sustainable Development Goals. In contrast to other critical engagements with partnerships which have tended to focus on experiences and effects of these partnerships in situ; this paper draws on the example of the UK to explore how partnership working and development agendas have become entwined. Moreover, this entwinement has ensured that GHPs are far from the “global” endeavour that might be expected of global health and instead exhibit geographies that are far more representative of the geopolitics of overseas development assistance than biomedical need.

 

Navigating ‘riskscapes’: The experiences of international health care workers responding to the Ebola outbreak in West Africa

Stephanie Gee and Morten Skovdal

This paper draws on interview data to examine how international health care workers navigated risk during the unprecedented Ebola outbreak in West Africa. It identifies the importance of place in risk perception, including how different spatial localities give rise to different feelings of threat or safety, some from the construction of physical boundaries, and others mediated through aspects of social relations, such as trust, communication and team dynamics. Referring to these spatial localities as ‘riskscapes’, the paper calls for greater recognition of the role of place in understanding risk perception, and how people navigate risk.

 

Science, Technology, and Human Values

Shi (勢), STS, and Theory: Or What Can We Learn from Chinese Medicine?

Wen-Yuan Lin

How might science and technology studies and science, technology and society studies (STS) learn from its studies of other knowledge traditions? This article explores this question by looking at Chinese medicine (CM). The latter has been under pressure from modernization and “scientization” for a century, and the dynamics of these pressures have been explored “symmetrically” within STS and related disciplines. But in this work, CM has been the “the case” and STS theory has held stable. This article uses a CM term, reasoning-as-propensity (shi, 勢), to look at contemporary practices of cancer care in a hospital in Taiwan. It describes how shi (勢) informed the design of a new decoction, Kuan Sin Yin, while also relating to the production of scientific knowledge, biomedical interventions, Buddhist practices, and the patients living with cancer themselves. Does CM’s use of shi (勢) simply confirm the essential and incompatible otherness of CM? Looked at from outside the answer seems to be yes. However, this article explores how STS might change itself—and the theory–practice division in STS—by thinking through shi (勢) in dialogue with its othered object. This opens the possibility of an STS for CM.

 

Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing
Flows, Nonflows, and Overflows

 Klaus Hoeyer, Aaro Tupasela, Malene Bøgehus Rasmussen

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing.

 

Social Science & Medicine

The social logic of naloxone: Peer administration, harm reduction, and the transformation of social policy

Rachel Faulkner-Gurstein

This paper examines overdose prevention programs based on peer administration of the opioid antagonist naloxone. The data for this study consist of 40 interviews and participant observation of 10 overdose prevention training sessions at harm reduction agencies in the Bronx, New York, conducted between 2010 and 2012. This paper contends that the social logic of peer administration is as central to the success of overdose prevention as is naloxone’s pharmacological potency. Whereas prohibitionist drug policies seek to isolate drug users from the spaces and cultures of drug use, harm reduction strategies like peer-administered naloxone treat the social contexts of drug use as crucial resources for intervention. Such programs utilize the expertise, experience, and social connections gained by users in their careers as users. In revaluing the experience of drug users, naloxone facilitates a number of harm reduction goals. But it also raises complex questions about responsibility and risk. This paper concludes with a discussion of how naloxone’s social logic illustrates the contradictions within broader neoliberal trends in social policy.

 

The intimate relationship as a site of social protection: Partnerships between people who inject drugs

Tim Rhodes, Jake Rance, Suzanne Fraser, Carla Treloar

Public health research treats intimate partnerships as sites of risk management, including in the management of HIV and hepatitis C transmission. This risk-infused biomedical approach tends to undermine appreciation of the emotional and socially situated meanings of care in intimate partnerships. In this article we explore qualitative interview accounts of the care enacted in partnerships between people who inject drugs, drawing on a 2014 study of 34 couples and 12 individuals living in two locations of Australia. A thematic analysis highlights ‘best friend relationships’, ‘doing everything together’, ‘co-dependency’, and ‘doing normalcy’ as core to narratives of care. As we will argue, the accounts position the care undertaken by couples as at once shaped by day-to-day practices of drug use and by social situation, with the partnership enacting care as a form of social protection, including protection from stigma and other environmental hostilities. The intimacy of doing everything together offers insulation against stigma, yet also reproduces its isolating effects. While the care produced in drug-using partnerships is presented as double-edged, we note how interview accounts are used to deflect the charge that these relationships represent harmful co-dependency. Taken together, the interview accounts negotiate a ‘counter-care’ in relation to normalcy, presenting the intimate partnership between people who use drugs as a legitimate embodiment of care.

 

The problem of choice: From the voluntary way to Affordable Care Act health insurance exchanges

Jessica Mulligan

This article takes a genealogical and ethnographic approach to the problem of choice, arguing that what choice means has been reworked several times since health insurance first figured prominently in national debates about health reform. Whereas voluntary choice of doctor and hospital used to be framed as an American right, contemporary choice rhetoric includes consumer choice of insurance plan. Understanding who has deployed choice rhetoric and to what ends helps explain how offering choices has become the common sense justification for defending and preserving the exclusionary health care system in the United States. Four case studies derived from 180 enrollment observations at the Rhode Island health insurance exchange conducted from March 2014–January 2017 and interviews with enrollees show how choice is experienced in this latest iteration of health reform. The Affordable Care Act (ACA) of 2010 created new pathways to insurance coverage in the United States. Insurance exchanges were supposed to unleash the power of consumer decision-making through marketplaces where health plans compete on quality, coverage, and price. Consumers, however, contended with confusing insurance terminology and difficult to navigate websites. The ethnography shows that consumers experienced choice as confusing and overwhelming and did not feel “in charge” of their decisions. Instead, unstable employment, changes in income, existing health needs, and bureaucratic barriers shaped their “choices.”

 

“Even my sister says I’m acting like a crazy to get a check”: Race, gender, and moral boundary-work in women’s claims of disabling chronic pain

Jane Pryma

Recent research examines how women claim chronic pain in response to gendered moral discourses. However, extant research does not explore how race shapes the moral boundary-work performed by women suffering from disabling chronic pain. Through the qualitative analysis of twenty-four semi-structured interviews with women fibromyalgia sufferers conducted between October 2014 and August 2016 in the U.S.A., I demonstrate how women with fibromyalgia claim chronic pain by doing moral boundary-work, referencing gendered and racialized moral discourses that structure how claims of chronic pain as disability are and are not read as legitimate by doctors, disability bureaucrats and personal networks. Extending Hansen et al.’s work on stigma and the “pathologization of poverty,” I suggest that, per my sample, the different moral discourses deployed in white and Black women’s claims of chronic pain can be explained by the racialized and gendered boundaries of citizenship that structure U.S. welfare and disability politics. Finally, I argue for intersectionality’s relevance to research on moral boundary-work and the medicalization of poverty.

 

Accomplishing professional jurisdiction in intensive care: An ethnographic study of three units

Andreas Xyrichis, Karen Lowton, Anne Marie Rafferty

This paper reports an ethnographic study examining health professional jurisdictions within three intensive care units (ICUs) in order to draw out the social processes through which ICU clinicians organised and delivered life-saving care to critically ill patients. Data collection consisted of 240 h observation of actual practice and 27 interviews with health professionals. The research was conducted against a backdrop of international political and public pressure for national healthcare systems to deliver safe, quality and efficient healthcare. As in many Western health systems, for the English Department of Health the key to containing these challenges was a reconfiguration of responsibilities for clinicians in order to break down professional boundaries and encourage greater interprofessional working under the guise of workforce modernisation. In this paper, through the analysis of health professional interaction, we examine the properties and conditions under which professional jurisdiction was negotiated and accomplished in day-to-day ICU practice. We discuss how staff seniority influenced the nature of professional interaction and how jurisdictional boundaries were reproduced and reconfigured under conditions of routine and urgent work. Consequently, we question theorisation that treats individual professions as homogenous groups and overlooks fluctuation in the flow and intensity of work; and conclude that in ICU, urgency and seniority have a part to play in shaping jurisdictional boundaries at the level of day-to-day practice.

 

Sociology of Health and Illness

Ageing, masculinity and Parkinson’s disease: embodied perspectives

Grant Gibson, Ciara Kierans

Parkinson’s disease (PD) presents as an illness which predominantly affects older men. However older men’s lived experiences of PD, including how they are influenced by age and gender relations has seen little empirical study. Drawing on Watson’s male body schema, this paper explores how men engage with masculinities and ageing in order to make sense and meaning from PD. Data is presented from 30 narrative and semi structured interviews with 15 men of various ages who were living with PD. Findings suggest that PD threatens a visceral embodiment located in the body’s basic movements and intimate functions; a pragmatic embodiment expressed through men’s everyday occupations and an experiential embodiment concerned with emotions and sensations felt within and through the body. In addition, each dimension of men’s embodiment also intersected with the ageing process, a process also shaped in turn by broader social and cultural concerns regarding the positions and possibilities of men’s lives as they move through the life course. This paper concludes by discussing the implications of gender and ageing in understanding men’s experiences of PD.

 

At the margins of biomedicine: the ambiguous position of ‘Registered Medical Practitioners’ in rural Indian healthcare

Papreen Nahar, Nanda Kishore Kannuri, Sitamma Mikkilineni, G.V.S. Murthy and Peter Phillimore

This analysis challenges a tendency in public health and the social sciences to associate India’s medical pluralism with a distinction between biomedicine, as a homogeneous entity, and its non-biomedical ‘others’. We argue that this overdrawn dichotomy obscures the important part played by ‘informal’ biomedical practice, an issue with salience well beyond India. Based on a qualitative study in rural Andhra Pradesh, South India, we focus on a figure little discussed in the academic literature – the Registered Medical Practitioner (RMP) – who occupies a niche in the medical market-place as an informal exponent of biomedical treatment. We explore the significance of these practitioners by tracking diagnosis and treatment of one increasingly prominent medical ‘condition’, namely diabetes. The RMP, who despite the title is rarely registered, sheds light on the supposed formal-informal sector divide in India’s healthcare system, and its permeability in practice. We develop our analysis by contrasting two distinctive conceptualisations of ‘informality’ in relation to the state in India – one Sarah Pinto’s, the other Ananya Roy’s.

 

Theory, Culture, and Society 

Special Issue: Geosocial Formations in the Anthropocene

An Interview with Elizabeth Povinelli: Geontopower, Biopolitics and the Anthropocene

Elizabeth A. Povinelli, Mathew Coleman, Kathryn Yusoff

This article is an interview with Elizabeth Povinelli, by Mathew Coleman and Kathryn Yusoff. It addresses Povinelli’s approaches to ‘geontologies’ and ‘geontopower’, and the discussion encompasses an exploration of her ideas on biopolitics, her retheorization of power in the current conditions of late liberalism, and the situation of the inhuman within philosophical and anthropological economies. Povinelli describes a mode of power that she calls geontopower, which operates through the governance of Life and Nonlife. The interview is accompanied by a brief contextualizing introduction.

 

Configurations

Gut Ecology: Meat Science, Modernity, and Carrion Aversion in Gandhi’s India

Lucinda Cole

This essay examines debates about carrion eating in late nineteenth- and early twentieth-century India. Although proscriptions against carrion eating among the noncaste Hindus were entangled in Indian anticolonial, nationalist, and cow-protection movements, “Gut Ecology” places the subject in the material contexts of bacteriology, the study of zoonotic disease, and the emergence of meat science. The essay focuses on an exchange of letters (1933) between M. K. Gandhi and Dr. G. V. Deshmukh, the first president of the Indian Medical Association, in order to explore historical and theoretical relationships among affective, political, and scientific culture.

 

 

 

Web Roundup: A Hack By Any Other Name by Emily Goldsher-Diamond

31 Mai 2017 - 5:00pm

Hacking has been on our minds for months now, namely due to the American (and now French) presidential election. But hacking has been of interest to scholars for decades, and in many iterations. Hacking has been analyzed as a craft, an aesthetic, a historical practice, a subculture, a form of activism, a mode of resistance, and more. Scholars such as Gabriella Coleman have made it their life’s work to study hacking. Hacking has inspired powerful works of fiction and art. But here we are: hacking in public discourse is largely distilled down into its relationship to the 2016 presidential election (perhaps aside from the large-scale Wannacry hack this month). But there is so much more to hacking, broadly and at this moment in time. Hacking is polysemic, as evidenced by what follows here this month.

What do you think of when you think of a hacker? Probably not one Liverpool billboard that was changed by hackers this week to say, “we suggest you improve your security.” Hackers, in some regard, are a helping profession. Over at The Conversation, you can read about how ethical hacking may help point out otherwise unknown system vulnerabilities. Maybe, as Motherboard suggests, young women who hack will shape the worldHacking can also by legitimized by those in power. Noted in a piece about piracy and the pirate at The American Interest, hackers can have both criminal and political motives. This isn’t new: hackers have been political for as long as there’s been hacking. But it continues to be worth asking: Are they still hackers if they are supported and deployed by the state? Or, maybe, when does a hacker simply become a bug chaser?

Living with the Internet of Things also means that (most) things may also get hacked. What is the Internet of Things? It is partially self explanatory: things now joined with the internet are animated and made lively by their connectivity to the web and to us. It is also, say, a kind of material culture enabled, perpetuated, and created by computing.  At Forbes, Stuart Madnick argues that the Internet of Things has made us vulnerable from nearly every which way, and so what is required is a broad cultural adjustment. Similarly, Keith Waddell argues at The Atlantic that the Internet of Things requires its own code of ethics. This month, we saw hacks on robots (remotely), a soup can, Chipotle, a teddy bear, pacemakers, and even a toy doll (to rob you, of course).

Marketers want to hack our unconscious. What’s next? We can hack our brains. We can hack our biology. We can hack the Anthropocene. What does it mean, today, to hack? What does it mean to be a hack? To do a hack? These are all questions worthy of examination. In an age of increased (in)security and surveillance, both the meaning and reach of hacking continues to expand. These breaches of literal and figurative boundaries stretch the bounds of the imagination and our understanding of the world around us. What will be hacked next? Perhaps it must be our tools for inquiry.

More links of interest:

The history of the quantified self – Cyborgology

“An Interview with Patricia Leavy about Research Design in Contemporary Times” – The Sociological Imagination

“Twitter and Tear Gas: How Social Media Changed Protest Forever” [Excerpt] – Wired

“Designers on Acid: The tripping Californians who paved the way to our touchscreen world” – The Guardian

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