Kalpana Ram’s “Fertile Disorder: Spirit Possession and its Provocation of the Modern” by Mythily Meher
by Kalpana Ram
University of Hawaii Press, 2013, 336 pages
Spirit possession is a familiar anthropological interest. But efforts to understand it through scholarly, secular thought often require some suspension of disbelief. Or, more disconcertingly, they simply avoid engaging with the phenomena on its own terms, looking to locate its source in social, cultural, political or psychological conditions — “anywhere but the body” (210). With this ethnography of spirit possession in a South Indian fishing village, Kalpana Ram makes tracks into a more empirically satisfying analysis. Ram grounds herself close to those women who have been possessed. She takes their experience as a straightforward fact, and in doing so, rattles the foundations of the thought systems that deny the logic of such an experience.
What makes this approach so effective is that possession is not the book’s sole subject (though the stories of women given over to bitter or benign spirits animate its most poignant chapters); its subject is also the modern epistemologies that beleaguer attempts to make sense of spiritual phenomena. Ram dissects the key sources of this discontent, amongst them: the Cartesian privileging of minds over bodies; the scientific modelling of bodies as biological objects; and the Christian theological assumptions that are generalised into understandings of consciousness, will and agency. She also highlights ideological biases particular to an Indian context, like the obfuscation of Hinduism’s diversity to favour those branches seen to be on par with Western rationalist thought. Amidst these deconstructions, Ram forges productive, convincing theoretical directions, drawing most notably on phenomenological philosophy, post-colonial thought and feminist scholarship. The book swells with rich ethnography and emotional insight throughout.
Helpfully, Fertile Disorder is arranged so that the reader’s journey mimics Ram’s own evolving comprehension of a puzzling phenomenon. In its first pages, as if from one layperson to another, spirit possession is introduced as an intrigue. Its inscrutability is put into check by the two chapters comprising Part I, which together describe the historical, classed, emancipatory and high-caste Hindu forces that collude upon poor rural people — particularly women — to deny the facticity of their embodied worlds and experiences. Some such forces are specific, like the family planning missions who treat poor women’s reproductive systems as tools that can (and must) be controlled by their bearer. Other, broader forces show their face in what makes some Indian traditions a rich legacy and others vestiges of backwardness. Ram makes the canny observation that elite Hindu orientations to tradition, like Ayurveda and yoga, are never suspected of backwardness. If anything, they represent a sustained dialogue with the past, imparting a sense of Indians carrying tradition’s finest features into modernity. This observation has reaching resonance. India’s most fruitful ideological exports proclaim that sheer will and discipline are, first of all, uniformly accessible, and secondly, are the bridge to health and happiness. These ideas underlie yoga and meditation and drive their steady global spread, from the spartan yoga studios in most cosmopolitan centers to more therapeutic contexts, like counseling and rehabilitation, where a peaceable Eastern emphasis on willpower can help catalyze new realities for troubled people. The upshot is that in places like the Kanyakumari region of Tamil Nadu, which is saturated with development projects, the powers of psychiatry, sociology, high-Hinduism and rationality all congeal in opposition to those everyday experiences dismissed as the superstitions of uneducated people.
To demonstrate that these experiences do matter and may have meaning beyond their peripheral status, Ram relies on the strength of her informants’ life stories. She relays these in the four chapters of Part II such that the reader may trace her footsteps to the conclusions she draws. Some of the stories are deeply moving, as women recount past losses or suffer fresh ones, including miscarriage, death of loved ones or difficulties adjusting to marriage. Chapter four opens with a lament by an infertile woman who compares herself unfavorably to clay, stone and wood — these materials have a purpose: as pots, temple doors and statues. Barren, she deems herself purposeless. This link between sadness and corporeal vulnerability is persistent. Most women are possessed in emotionally, socially vulnerable times — times that simultaneously draw attention to emotions and redefine emotions. Ram develops this observation towards a theoretically potent formulation of relational agency and emotion; she suggests that those who are susceptible to possession share the capacity to be affected by the suffering and violent ends of others. “It is this capacity, unevenly distributed within any social group, that seems to allow ghosts to find particular individuals to serve as their witness, often in pitiable and dramatic ways” (88).
The errant goddesses and ghosts who possess vulnerable women are also catalogued in these chapters. They are marked by class (there is a goddess whose name Ram remembers from family worships in her childhood — a serene figure in that middle-class context who manifests in the fishing village as a malicious, vengeful spirit). They are marked by gender too, and the ghosts can frequently be linked to past un-atoned, gendered injustices surrounding a woman’s death. Over these richly textured chapters the power of these spirits remains potent. Yet, it is de-exoticized. Like pregnancy, like driving a car, spirit mediumship is presented as the body’s acclimatisation to an object/subject one extends oneself through: “it entails developing a skilled form of comportment in relation to an initially unknown and unchosen being that seems to want to consume a great deal of one’s life” (154). Similarly, mediumship is shown to entail an agent’s conscious submission to a relative agent, much like Alfred Gell’s artist submits to the tree he or she wants to paint, in order to render it “by some mysterious muscular alchemy which is utterly opaque to introspection” (Gell 1998: 45, cited pp. 155). The objectivity of spirits may be folded into notions of traumatic memory, felt in distorted form when recollected (like Merleau Ponty’s phantom limb), and emotions may dog grieving widows like ghosts. These middle chapters of Fertile Disorder accumulate the sense of such permeable worlds. By the time I reached Part III, in which modern theory is reconsidered with fresh eyes, I felt pleasantly rearranged.
Besides this book’s obvious contribution to the literature on South Asia, subaltern studies, embodiment and spirit possession, it also has something to offer studies of resistance, memory, grief, trauma and alternative forms of justice. The unique ways that Fertile Disorder furthers theories of agency and of habitus are also significant. More generally, though, Ram’s attitude in these pages makes me think of Trinh T. Minh-Ha’s eloquent distillation of ethnography’s placement and objective: to not speak about, but to speak nearby. [i] In a way, anthropologists are not unlike the mediums described in the book: entraining intellectual, embodied selves to the concerns of other agents — be they corporeal or spiritual — in order to speak of them with integrity. And so I would even suggest this as one of those monographs worth reading simply to enjoy ethnography done well.
[i] In her film, Reassemblage (1983).
Mythily Meher is a medical anthropologist doing her PhD at the University of Melbourne in Australia. Her research concerns engagements between diverse understandings of mental illness, with a focus on people’s efforts to reorient their own or others’ beliefs.
Kulick and Rydström’s “Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement” by Narelle Warren
by Don Kulick and Jens Rydström
Duke University Press, 2015, 376 pages
Access to opportunities for the expression of sexuality occurs in a (fairly) unproblematic way for most of us. Alone or with others, sexual desires can be identified and fulfilled as the need arises, in encounters that involve only the people engaged in such expressive moments. This presumption—very rarely interrogated—is based, at least in part, on the conflation of sexuality with adulthood. The realisation of these opportunities, too, is unproblematic, taking place in private domains that (largely) exist outside of the purview of the nation state. In their innovative ethnography, Loneliness and Its Opposite, Kulick and Rydström take as their focus these mundane realities of people’s intimate and erotic lives, and the assumptions that underlie them, to focus on the experiences for whom access to sexuality is not easily, if ever, made possible: those living with significant disabilities who not only require assistance in their everyday lives but who also require help in interpreting, accessing and realising their sexuality.
The authors are concerned to move away from a consideration of sexuality as a human right, with this perspective’s implicit goal of producing a set of ‘lessons to be learned’, in order to focus on the social and relational effects of different forms of engagement in allowing people with disabilities to live lives that have both quality and dignity. To do this, they draw on the ‘capabilities approach’, developed by Amartya Sen and subsequently refined by Martha Nussbaum, to take a social justice lens in considering how layered contexts of disability in particular settings shape sexuality. It is precisely because sexuality has been largely overlooked by disability scholars, and disability overlooked by theorists interested in sexuality, that the research question is so important to address, and why the authors take such an approach. Kulick and Rydström employ a comparative approach to examine how the state, through discourse and policy, creates a set of social and political conditions that acts to either promote and support or deny and repress the fundamental entitlement to sexuality of significantly disabled adults. In focusing on two Scandinavian welfare states, Denmark and Sweden, both regarded globally as socially progressive and with similarities in social welfare and disability policies, the authors illustrate the profound impact of nuances in discourse in shaping the possibilities of erotic life for people with disabilities.
The central contention of the poetically named and beautifully written Loneliness and Its Opposite is this: even when the state—or the individuals employed by the state to act for the state—takes a stance to do nothing (as in the case of Sweden), they engage in particular, and potentially regressive or harmful, ways. In this way, such passive engagements themselves give rise to ethical dilemmas. Ethical engagement, one of the topics of interest, goes beyond ‘doing no harm’ to involve active and progressive engagement with marginalised people. Of course, the irony of the Swedish case is that these regressive effects occur in stark contrast to a raft of other progressive social reforms aimed at reducing and eliminating other forms of social injustice.
The contemporary discrepancies in policies and practices between Sweden and Denmark documented throughout the chapters of this volume have their genesis in two conferences on the sexual lives of people with disability that took place, six months apart, in 1966 and 1967 (respectively). Despite taking place nearly 50 years ago and both being concerned with the ‘normalization principle’, which advocates for the lives of disabled and nondisabled people to be as similar as possible, the specific perspectives taken at this time continue today. In Sweden, sexuality was downplayed alongside a simultaneous focus on love, trust, attachment and care; on one hand, this minimised the importance of erotic lives and, at the same time, positioned disabled people’s sexuality in terms of the potential (and even likelihood of) ‘danger’. Carers were and are therefore instructed not to independently raise questions of sexuality, but instead to respond when this is introduced by the disabled person. Given the limited expressive capabilities of many people with significant disabilities, as well as barriers introduced by power relations, this leaves sexuality avoided, ignored (through a cycle of referral), or ‘disciplined’.
Contrasting this example, sexuality for people with disabilities in Denmark was understood as an equally important aspect of ‘normalization’, and it was therefore seen as something that needed to be facilitated and supported through the development of policies and practices. Following considerable debate and consultation with human rights movements, genuine action produced both a guidelines document for supporting sexuality and an education-focused strategy whereby social workers could specialise in supporting disabled people to have an erotic life. In consequence, as the authors argue, sexuality in Denmark is “acknowledged, discussed and facilitated” (p.4). These historical accounts are detailed, but provide a necessary background against which current practices can be framed and interpreted. It is worth emphasising that that authors extend their analysis of the reasons behind the differences to consideration of broader societal regulations and norms placed on the behaviour of the citizenry, cultural ethos and the translation of ideological perspectives (such as feminism) into practice.
Loneliness and Its Opposite is provocative in its consideration of people who have been overwhelmingly voiceless (and thus powerless) in most work on disability and sexuality. Yet this provocation underlies the entirety of the ethnographic account: the reification of politically-correct language in Sweden, as Kulick and Rydström demonstrate, displaces the locus of action around sexuality. This overemphasis on the importance of particular language forms means that action is rarely translated into practical or political domains, and so the debate around sexuality for disabled people remains fixed; while this seems antithetical to the state’s socially progressive agenda, it is explained also in terms of other competing discourses which highlight the importance of managing risk and minimising danger. Language is problematic not only in that it prevents real action, but also because it reveals deeply embedded and troubling, even Orwellian, views of the personal lives of people with significant disabilities. The language around disability in Denmark, in contrast, is far less politically correct. Disabled and nondisabled Danish people use terms that sit as uncomfortably with the reader as they did for Kulick when conducting observation in group home settings. These terms are employed throughout the ethnography, providing an important illustration of the precise argument being made here about the role of language, both as a historical artefact and a contemporary practice, in producing social conditions that either support or deny sexuality for people with significant disabilities.
Ethnographic accounts were obtained through interviews with 98 people who were involved, in a range of ways, in the erotic lives of people with disabilities. Two-thirds of these people were Danish, due to the explicit interest on those instances whereby sexuality is facilitated and supported. This data was supplemented with three intensive periods of observations in group homes, as well as written literary and scholarly accounts. Drawing on this data, the authors challenge bodily and social boundaries in multiple, complex ways; through the practices of family members and care workers, the boundaries of concern are translated and reconfigured to develop a space within which erotic lives can exist and flourish. Where these boundaries remain fixed, as in the case of Sweden, these erotic lives are hindered and made close to impossible.
The separation of public and private domains is problematised through situating the ethnography in group homes: while people with significant disabilities live in these settings, and thus they represent the safe and affective spaces of home, these group homes are also the workplaces of other people. Thus, the intimate activities that occur in these settings are no longer private, but are necessarily brought into the public domain. If the state is responsible for the goings-on in the public domain, then it becomes an integral part of the constitution of these home spaces, too; part of the problem that the Swedish state, in particular, has been unable (or, as is perhaps more relevant, unwilling) to rectify is how to manage the private domain needs of some people (i.e. to sexuality) in the public work domain assurances provided by others (i.e. the right to a safe workplace). The recognition of sexuality for workers in group homes in Denmark demonstrates one form of re-interpretive practice and offers one way to address this tension, as does the specialist training as sexual advisors for some social workers.
This latter point gives rise to the second type of boundary redefinition: that between work and intimacy. Some people with significant disability, such as those described in Loneliness and Its Opposite, have limited or no movement without the assistance of other people. To support their sexual expression, the boundary between work and intimacy are necessarily blurred: the individuals themselves need to be positioned, as do others, or sex aids. Where the disabled person also experiences communicative or expressive impairments—not an uncommon occurrence for people with intellectual disabilities—assistance may be required in identifying their sexual needs. At the same time, for these and other participants, assistance is required to procure access to sex workers, pornographic material or contraception (including putting on condoms). The latter area, as the authors identify, is a vexed area, giving rise to another type of boundary blurring: that between sex and reproduction. In Denmark, sexual advisors negotiated the tension between wanting to support the erotic lives of those with whom they worked but were extremely concerned about preventing pregnancy. Most women consequently had permanent contraception, although sterilisation was not uncommon, as the authors describe. Love and sex are blurred together, too, especially for mothers who were distressed by but wanted to support their disabled sons’ burgeoning sexuality, as is detailed through several case examples. Gull-Marie’s story, for example, highlighted the tensions faced by parents who want to give their children a full and dignified life, including a sexual life, but who face moral dilemmas in trying to establish the best way to facilitate this.
The boundary between abuse and affection highlights one of the key points of difference between Sweden and Denmark; sexuality for people with disability in the former is only seen as abuse, whereas this is an area where Danish sexual advisors and policy makers have devoted considerable attention to ensure that separation remains between the two. The fact that sexuality occurs for people living in Danish group homes is therefore not because these risks are not given importance, but because they are brought into the open, allowing sexual advisors to develop trusted relationships with the people with whom they work and thus to consciously develop ways of ensuring the physical and emotional safety of all involved in every sexual encounter. In supporting their opportunities for a sexual life, Alida was also involved in educating Dorte and Ragnor about what sexually pleasurable interactions were about; in this way, she didn’t simply facilitate sex in an instrumental way, but also provided important information which enhanced the experience of sexuality. Through the presented case studies, each of the contested boundaries described compels care workers, scholars, activists and policy makers to think about engagement in different ways.
In addition to the contested boundaries identified and explicated by Kulick and Rydström, the cases presented here also challenge the idea that bodily capacity in some way shapes access to adult life experiences. While they require assistance, participants in their study are adults who have sexual desires that can be realised and supported by others. The innovation offered by the sexual advisors to facilitate sexuality, as illustrated throughout this volume, is demonstrated in multiple ways. In watching Rasmus’s actions rather than relying only on his spoken desires, for example, sexual advisors engaged with him in a way that not only supported him to achieve an erotic life, but also challenged heteronormative assumptions that often form the fall-back position of health workers, policy makers, and others involved in disabled sexualities.
As a medical anthropologist interested in chronicity and impairment, I’m more than a little in love with Loneliness and Its Opposite. It makes me attempt to take a more inclusive and daring approach, both in the topics I study as well as the work produced. The work is compelling and accessible, written in a style that captures the reader at the start and holds that interest throughout. By drawing on ethnographic accounts, historical material and cultural artefacts, Don Kulick and Jens Rydström demonstrate the complex layers of experience and reinforce the importance of anthropological considerations of context as extending to structural elements, as well as local processes. As they are concerned with the facilitation of, not impediments to, the erotic lives of people with disability, the ethnographic data collection is largely limited to Denmark. While this could be a criticism of this work, given the concern with social justice, this decision is appropriate. Indeed, any potential methodological shortcomings are addressed and explained, transforming such limitations into strengths. In framing their book in terms of the ‘ethics of engagement’, Kulick and Rydström highlight the contribution anthropologists and other social scientists can make in identifying and representing the fundamental aspects of human experience—and the importance of identifying, capturing, describing and interpreting the diversity therein.
Narelle Warren is a lecturer in Anthropology in the School of Social Sciences at Monash University. She is currently conducting research on neurological conditions in Australia and Malaysia, focusing on Parkinson’s Disease and stroke, as well as the influence of health system factors. She has also recently completed a study on people’s experiences of sexuality and non-traumatic spinal cord injury.
This month it was hard not to pay attention to what was happening in the world of Pharma, where several cases came to light illustrating just how murky and contested the role of one of the most powerful industries in the world is in shaping not just business practices, but collective social and moral consciousness as well.
A recent Gallup poll has highlighted the increasing wariness with which Americans view the pharmaceutical industry. According to the poll, Americans view the high cost of prescription drugs as the main reason for rising healthcare costs, and the pharmaceutical industry is consistently ranked in the bottom third of sectors since 2003, when Gallup expanded the list to 25 industries.
Among the many Pharma related concerns on the web this month, price hikes and profiteering have stood out with regards to the Daraprim scandal highlighting how a lack of regulation in this are can take its toll. The decision by Martin Shkreli of Turing Pharmaceuticals to raise the price of the drug, used to treat a life threatening parasitic infection often most apparent in those with compromised immune systems, from $13.50 to $750 overnight symbolized to many just how broken, and in need of regulation the system is.
The public response to the scandal from the medical community argued that boosting the price to $750 comes as a result of uninformed reasoning, noting that there is no dire public health need of new drugs to target Taxoplasmosis, but rather this is an issue of greed, plain and simple. The article presents the views of leading infectious disease doctors who set out to clear up the errors Shkreli has used to defend his decision, such as suggesting that patients only take the drug for four to six weeks, when in fact it often requires 6-12 months worth of maintenance, or another claim in which Shkreli hopes that Turing pharmaceuticals will ultimately eradicate the disease, an idea which falls flat in reality, as Toxoplasmosis is everywhere and isn’t an issue for most people. It only becomes a problem when a person’s immune system is compromised, so its not a disease that can be ‘cured’, rather one that can be controlled…with the right medication. It seems in the week since the scandal broke, pressure and public shaming have led Shkreli to change his mind, vowing now to keep the drug affordable.
A recent article by Philipp du Cros, an infectious disease expert with Medicines sans Frontieres, suggests that hiking up the price of drugs doesn’t work in the long run. Highlighting a similar case involving a drug used to treat Tuberculosis, Cycloserine, the article discusses how the medication was acquired by a pharmaceutical company who promptly raised the price from $500 for 30 capsules to $10,800, before returning it to the original owner in the face of a public backlash. The drug, known for its horrible toxic side-effects, alongside eight months of painful daily injections, is one of the only solutions for those with certain treatment resistant strains of TB, and as research and development stands now, there is no hope of new drugs replacing the less than ideal older set, or for shorter and better combinations of drugs, to reach a cure. Du Cros argues that there is no evidence to support the claim of pharmaceutical companies who say that profits are the only way to counteract expensive research costs and pay for innovation down the line. Instead he proposes that the idea that as long as we pay high prices, diseases that have until now been neglected will suddenly find the research backing they need is a false assumption. Better ways need to be found of moving forward to find cure, with du Cros favoring open, collaborative approaches to research, and incentives that reward collaboration paying for research upfront rather than relying on high prices.
The moral dilemma of healthcare investments is the perspective presented in an article noting that when dealing with serious illness, there is a fine line between profits that are essential to keep such collaborative research going, and the mere lining of pharma executives pockets. High prices have been used to justify the very real high cost of research and development for decades, however this article points out that the actual success rates of drugs released commercially which turn a profit is in fact quite low, leading to the revelations that the amount spent on marketing these new medications often goes well beyond the initial development costs. The authors write that the problem doesn’t solely lie with the US, presenting the idea that European pharmaceutical companies consider the US to be a “golden market”, wanting to market and sell their products there. The events related to drug price inflation in the recent news have pushed personal ethics need to the forefront of discussion.
This corruption related to pharmaceutical industry practices is not just an American problem, as mentioned. A recent piece in The Guardian presented the case of two former UN consultants now jailed by a UK court for rigging contracts worth £66m to supply life saving drugs to the Democratic Republic of Congo, with one joking that they were making money by selling overpriced drugs “to dying and starving Africans”. Another article focuses on a recent report revealing a deeply worrying trend in the dramatic extent to which lobbying and privileged access among pharmaceutical industry towards EU decision-makers, in an effort to mould EU policy to their own commercial benefit.
An article in Newsweek on pharmaceutical fraud and fake medications illustrates a growing problem in an increasing globalized economy in which one pill may pass through a dozen or more countries during its manufacturing process, providing no shortage of opportunities for criminals to put fake drugs into the supply chain. The piece goes on to cite studies suggesting that 90 percent of drugs purchased online come from a different country than what the website claims, and Internet pharmacies often buy drugs from countries with very loose systems of regulation.
While profiteering and corruption have been at the heart of the news this month, so too has been the uneasy position of children in these debates, and the possible mis-medication which has come to the fore, with many children being medicated for ADHD which they may not actually have, or the increasing practice of favoring profit over the science behind best use of the medication, as in the case of antipsychotics such as Risperdal for children with bipolar disorder and Autism, downplaying their tremendous, untested and unsettling side-effects.
The off-label prescription of untested pharmaceuticals to children, sometimes as young as three years old, shows that the contentious debates over the very delicate intersection between profit, essential research, development and innovation, marketing and prescribing of medications are ongoing and need to be kept alive.
Responses to the events of the last month show that the public is paying attention, as is the industry itself, and perhaps the power of a collective push towards greater responsibility will lead to increased attention to ways in which extreme, unnecessary profiteering can be reigned in to ensure continued innovation without the unnecessary cutting off of access to the most essential medications for those who would most benefit from them.
A new crop of books has arrived and they need to be reviewed! We are now asking reviewers to complete their pieces within four months of receiving a copy of the book. If you can write your review more quickly, that’s great, but if you don’t think you can manage to finish it in four months, please don’t volunteer. We have a very very long list of book reviews that were promised but never completed. (You know who you are….. it’s not too late to turn it in!) So, if you are interested in reviewing one of the books listed below, and think you can complete it on time, please contact Seth Messinger at firstname.lastname@example.org. Also, if you haven’t written for us before, please send along a brief writing sample.
John Borneman, The Ritual Rehab of Child Molesters in Germany, University of Chicago Press
Laurel Braitman, Animal Madness, Simon and Schuster
Mara Buchbinder, All in Your Head: Making Sense of Pediatric Pain, University of California Press
Joseph D. Calabrese, A Different Medicine: Postcolonial Healing in the Native American Church, Oxford University Press
Nathaniel Comfort, The Science of Human Perfection: How Genes Became the Heart of American Medicine, Yale University Press
Michele Friedner, Valuing Deaf Worlds in Urban India, Rutgers University Press
Kaja Guenther, Localization and Its Discontent: A Genealogy of Psychoanalysis and the Neuro Disciplines, University of Chicago Press
Marcia Inhorn, Cosmopolitan Conceptions: IVF Sojourns in Global Dubai, Duke University Press
Janis Jenkins, Extraordinary Condition: Culture and Experience in Mental Illness, University of California Press
David S. Jones, Broken Hearts: The Tangled History of Cardiac Care, Johns Hopkins University Press
Salmaan Keshavjee, Blind Spot: How Neoliberalism Infiltrated Global Health, University of California Press
Kelly Ray Knight, addicted.pregnant.poor, Duke University Press
Jane Maienschein, Embryos under the Microscope: The Diverging Meanings of Life, Harvard University Press
Natasha Myers, Rendering Life Molecular, Duke University Press
Alondra Nelson, Body and Soul: The Black Panther Party and the Fight against Medical Discrimination, U Minnesota Press
Sonya E. Pritzker, Living Translation: Language and the Search for Resonance in U.S. Chinese Medicine, Berghahn Books
Dana Simmons, Vital Minimum: Need, Science and Politics in Modern France:, University of Chicago Press
Sarah S. Richardson, Sex Itself: The Search for Male and Female in the Human Genome, University of Chicago Press
Sara Shostak, Exposed Science: Genes, the Environment, and the Politics of Population Health, University of California Press
Jenny Slatman, Our Strange Body: Philosophical Reflections on Identity and Medical Interventions, Amsterdam U Press
Kara W. Swanson, Banking on the Body: The Market in Blood, Milk, and Sperm in Modern America, Harvard University Press
Samuel Tayor-Alexander, On Face Transplantation: Life and Ethics in Experimental Biomedicine, Palgrave Macmillan
Carsten Timmermann, A History of Lung Cancer: The Recalcitrant Disease, Palgrave Macmillan
Susan Reynolds Whyte, Second Chances: Surviving AIDS in Uganda, Duke University Press
Everett Zhang, The Impotence Epidemic: Men’s Medicine and Sexual Desire in Contemporary China, Duke University Press
For this instalment of the Top of the Heap series, I spoke with Michael M.J. Fischer, Andrew W. Mellon Professor in the Humanities, Professor of Anthropology and Science and Technology Studies at MIT, and Lecturer in Social Medicine in the Department of Global Health and Social Medicine, Harvard Medical School.Michael M.J. Fischer
Elizabeth Wilson’s new book Gut Feminism (Duke 2015) arrives just in time and is on the top of my pile: a chapter from it is also in the new feminist STS online journal Catalyst. Wilson’s challenge for feminism to think with, rather than against, biology is refreshing. So too is a different take on depression: the opening pages on the brain and the cognitive-centric bias of psychiatry and feminism are great (and lucidly written).
Lei Sean Hsiang-Lin’s Neither Donkey nor Horse: Medicine in the Struggle over China’s Modernity (Chicago 2014) comes highly recommended by a number of friends and looks like a richly detailed integrative account. Liz Chee Pui Yee has just finished a fascinating dissertation at the National University of Singapore on pharmaceuticals and animal-based drugs between 1950 and 1990 based on archival materials and interviewing which I’ve been following, and so I am looking forward to seeing how that articulates with Lei’s work.
The edited volume Robot Ghosts and Wired Dreams: Japanese Science Fiction from Origins to Anime from editors Bolton, Christopher, Istvan Csicsery-Ronay Jr., and Takayuki Tatsumi (Minnesota 2007) is on my must-get-to list. Ever since the mid-1990s when a group of us began thinking about social theory, ethnography, life histories and technoscientific imaginaries (viz. the Late Editions volume called “Technoscientific Imaginaries” (Chicago 1994), I’ve been trying to integrate science-informed novels (e.g. Richard Powers), film, and visual materials. This collection comes highly recommended by friend and colleague Ian Condry.
Renée C. Fox has a new book, Doctors without Borders: Humanitarian Quests, Impossible Dreams of Médecins Sans Frontières (Johns Hopkins 2014). This is the third major study by anthropologists and medical sociologists of MSF (see also Didier Fassin and Peter Redfield), and I look forward to the triangulation. She has been an inspiration in the field and I expect this to be good.
Michael Marder’s Plant Thinking: A Philosophy of Vegetal Life (Columbia 2013) is also on the list: he is right that we have been so focussed in recent years on animal companion species that the rich tradition of thinking with plants (except as drug sources) needs reviving. (Natasha Myers has been doing some of this as well.) He’s a really interesting thinker and I suspect that while not ethnographic or social-institution minded, this will be stimulating.
Richard Primack’s Walden Warming: Climate Change Comes to Thoreau’s Woods (Chicago 2014). While I’m fascinated by the classics in their own contexts, it is refreshing to think about restudies that insert old exemplars into the contemporary world. Primack has been doing fascinating work on forests and conservation, and I’m looking forward to taking a walk in the woods with him, climate change in mind.
Michael M. J. Fischer teaches at MIT in Science and Technology Studies and Anthropology and co-teaches an Introduction to Global Health course at the Harvard Medical School. He’s been championing the anthropology of science and technology as an ethnographic and social theory contribution distinctive from SSK and ANT, ethnography as experimental form, and the contemporary global or transnational circuitry of STS as opposed to what he calls the obsessive Euro-American-centric canon, e.g. “Biopolis: Asian Science in the Transnational Circuitry” (2013). With Joe Dumit, he edits the Duke University Press series, Experimental Futures: Technological Lives, Scientific Arts, Anthropological Voices; and with Byron Good, Mary Jo DelVecchio Good, and Sarah Willens, he co-edited A Reader in Medical Anthropology: Theoretical Trajectories, Emergent Realities.
Image: Book and Candle, Paul Mood
“The question for me of whether to get a stomach tube for my mother was whether or not she has lived her natural life completely. Maybe her time has come and maybe not. The tube just makes a natural life last longer. . . But it is really difficult! It just has to be case by case…”
Yasuda-san pursed his lips silently, as if to make sure his words would not change their minds and return to his mouth. Then he turned to the older man dressed in a baggy beige cardigan at the table next to him and gestured to his mid-section.
“Stomach tubes! It is really case by case, right?”
“Case by case!” the man replied, nodding, “But it is at least something that you can do. If they need a lot of hydration or something, they can put the tube in so that they don’t get oesophageal pneumonia. . .”
“If you get pneumonia it is really bad. . .” Yasuda-san agreed, “but the thing is, once you do [the surgery], you might have regrets. That’s just the human condition I guess. . . most people, once they put it in, they leave it there until the end. At my mother’s care home most, well, really everyone has a stomach tube. Every single one! In my mother’s case, [when I think about the tube] what I think about is whether this person is needed on this earth. I’m not sure.”
The two friends appraised their respective narratives, taking turns like playing a game of catch. Although I had been conducting participant observation in this men’s caregiver support group for several months, and was aware that Yasuda-san’s mother and Takeda-san’s wife were both living with advanced dementia, this was the first time I realized that the men had also made the decision to give artificial hydration and nutrition to the ones they cared for. The ethical uncertainty of the decision lingered. Yasuda-san was worried that perhaps he was not merely preserving her life, but extending it too long. These decisions about life-extending care could only be appreciated, as the two men agreed, case by case.
Yasuda-san turned back to Takeda-san, who had been listening quietly.
Yasuda: Your wife, can she still speak?
Takeda: No, she hasn’t been able to speak for over a year. But I still visit. She still knows.
Yasuda: Her eyes?
Takeda: Yes, right.
I quickly learned that conversations like these would spring up constantly once people learned that I was interested in the subject of elder care. Some caregivers, like Yasuda-san, leapt at the chance to talk about their experiences, but often ended up circling around an unresolved sense of bewilderment, uncertain futures, ambivalent feelings, thoughtful, elliptical eddies. At times it seemed like the experience of care was as simple and as heart-breaking as the flash of a mother’s glance, silently looking up at her son from a hospital bed. At other times it was so complex that each caregiver’s circumstances, their family relationships, the nature of the illnesses involved, their religious background, or insurance status—all of it could potentially shift the fragile stability of the care situation.
Along the way, decisions had to be made. For Yasuda-san, the choice of having a feeding tube inserted into his mother’s stomach was not taken lightly; in making his decision he was making a choice to become a kind of “case,” to himself, as much as to me or to his friends. Becoming a case means becoming a possibility, different from but linked to a coterie of other possibilities. As an anthropologist, it is this sense of possibility that draws me toward each new case, but I had not considered that my interlocutors were also aware of themselves as cases. Indeed, becoming a case meant deflecting bioethical judgement, since each case was its own constellation of contingencies.
Becoming a case motivates a further self-crafting of one’s first-person narrative (see Mattingly 2014). For Yasuda-san, this meant engaging with some heavy emotional and existential issues, such as weighing his mother’s destiny in this world and his responsibility for what he called her “soul” (tamashi), whose gaze he could not escape. Although a small percentage of those receiving a stomach tube are able to regain the ability to take in adequate nutrition by mouth (about 6.5.%), Yasuda-san was nearly certain that once the tube was in, it was never coming out. He could only wait until the stomach failed completely (maybe a matter of years) before his mother could die a natural death. Within this window of time, between the decision and the death, his case provided a point of conversation with other caregivers, like Takeda-san, whose story was similar, but also somewhat different, neither better, nor worse.
Another case among many, neither tragedy nor comedy, Yasuda-san’s case gives flesh to the often polarized debate around end of life care and the boundaries of the “natural” or “good” death in the oldest and longest-lived country in the world. As of September 21, 2015 (national “Respect for the Aged Day” in Japan), 26.7% of Japan’s population were 65 or older.
I had been following debates about the stomach tube already for a few months before Yasuda-san opened up to me at the support group. Nurses and care aides had at various times told me that the widespread use of stomach tubes among persons with dementia was an indication of staff shortage rather than an actual need or respect for the life and well-being of patients. “We are keeping [patients] alive to fit our own circumstances,” one nurse explained, “we would be in trouble if we let them just die, but it is just miserable.” Another care aide told me, “The family doesn’t visit but as long as the patient is alive and we are taking care of them, the family keeps on getting the pension, so of course they are going to get a tube.” He then asked if Americans were still using the tubes, since those used in Japan appeared to be American-made.
The case, in my research cannot help but be a case for the ordinary as a site of moral work (Das 2007; Mattingly 2014, 26). Michael Lambek has argued, “Ethnography supplies case material that speaks to the urgency and immediacy yet ordinariness of the ethical” (2010, 4). But this ordinariness is not to be seen in contrast with some abstract notion of the unusual or exceptional. As more and more stories surfaced, not only about tubes, but other forms of care and abuse as well, I began to hear fewer and fewer “exceptional” cases. I began to wonder, what might constitute the exceptional? Each case was different, to be sure, but at the same time, ordinary in the sense that it was grounded in the texture of everyday life.
Yasuda-san and Takeda-san practiced care in ways that afforded them chances to reflect on themselves, their care, their roles as men, as sons, as husbands. They experimented with possible selves as their circumstances changed, as potentials of life emerged as one thing and then became another. Becoming a case meant that they could share in this process of mutual reflection and recognition without being identical. Instead, they embodied two possibilities of the ordinary, each following a logic of care when taken case by case.
 I use the term “stomach tubes” as a translation of the Japanese irō 胃ろう, which in all cases mentioned refer to Percutaneous Endoscopic Gastrostomy (PEG) feeding (see Aita et al. 2007; Nakanishi and Hattori 2014 for more on the prevalence in Japan)
This publication was made possible through the support of the John Templeton Foundation, via The Enhancing Life Project. The opinions expressed in this publication are those of the author(s) and do not necessarily reflect the views of the John Templeton Foundation.
Aita, Kaoruko, Miyako Takahashi, Hiroaki Miyata, Ichiro Kai, and Thomas E. Finucane. 2007. “Physicians’ Attitudes about Artificial Feeding in Older Patients with Severe Cognitive Impairment in Japan: A Qualitative Study.” BMC Geriatrics 7 (1): 22. doi:10.1186/1471-2318-7-22.
Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press.
Lambek, Michael. 2010. Introduction. In Ordinary Ethics: Anthropology, Language, and Action, Michael Lambek, Ed. Pp.1-36. New York: Fordham University Press.
Mattingly, Cheryl. 2014. Moral Laboratories: Family Peril and the Struggle for a Good Life. Berkeley: University of California Press.
Nakanishi, M. and Hattori K. 2014. “Percutaneous Endoscopic Gastrostomy (PEG) tubes are placed in elderly adults in Japan with advanced dementia regardless of expectation of improvement of quality of life.” 2014. Journal of Nutrition, Health & Aging 18: 503-509.
Jason Danely is Senior Lecturer of Anthropology and an affiliate of the Centre for Medical Humanities at Oxford Brookes University. He has been conducting fieldwork-based ethnographic research looking at aging, caring, grief, and ritual in Japan since 2005. He is the author of Aging and Loss: Mourning and Maturity in Contemporary Japan (2014 Rutgers Univ. Press) and co-editor of Transitions and Transformations: Cultural Perspectives on Aging and the Life Course (Berghahn 2013). Since 2011, he has served as Editor-in-Chief of the journal Anthropology & Aging. He is currently writing a comparative ethnography of family caregivers of older adults in Japan and the UK.
Richard Keller’s Fatal Isolation: The Devastating Paris Heat Wave of 2003 is a careful accounting of the toll the heat wave took on those most vulnerable in the neighborhoods surrounding Paris. The book is about the shape of vulnerability and its amplification over time — in fact, Fatal Isolation requires us to pause on the ideas of risk, vulnerability, and precarity in order to consider the scale, grain, reach, and quality of disaster (natural, designed). By weaving together official history, epidemiological forecasting, and statistical reckoning — along with what Keller calls “anecdotes,” individual stories that give necessary texture to the invention and indifference of catastrophe — the book tells a story that allows the unease of the event’s chronology to come through: slow and then all of a sudden, concluded but lingering long after all is said and done, a rupture with a long preamble.
What follows is a collection of commentaries that take up Keller’s masterful study in different ways: some are deeply reflective and personal, others more directly highlight the civic, political, and global character of disaster, and underscore the associated alienation and negligence which both precedes and follows seemingly anomalous events. We hope you enjoy the comments on Richard Keller’s Fatal Isolation and his response.
Comments on Richard C. Keller’s Fatal Isolation: The Devastating Paris Heat Wave of 2003 (Chicago: University of Chicago Press, 2015):
Jens O. Zinn
The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.
Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson
Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy. In time of pandemic influenza, however, members of the general public are asked to enact non-pharmaceutical infection control measures such as hygiene and social distancing. Drawing on the concepts of manufactured risk and ontological insecurity, we use data from interviews and focus groups we undertook in 2011 and 2012 in Melbourne, Sydney and Glasgow, to examine how members of the general public understood the ‘fuzzy’ nature of the influenza virus and reconciled this with infection control measures. We found that participants in our research acknowledged: the difficulty of avoiding infection from influenza; impediments to accurate diagnosis and that infection control measures proposed by public health messages were compromised by the ‘fuzzy’ nature of the virus. However, we found that participants valued prevention measures, not necessarily because they were seen to be effective, but because they supplied security in the face of influenza’s uncertainties and the wider proliferation of daily and biographical risks.
Alexandra Farren Gibson, Christina Lee & Shona Crabb
Western understandings of breast cancer are primarily shaped both by neo-liberal, individual-oriented approaches to health and illness and by ‘consumer-led’ health movements. In this ‘healthist’ context, diagnosis of breast cancer typically marks a crisis in women’s lives, which may prompt them to account for the development of the illness and reposition themselves as self-governing individuals who have control over their health and who can manage future ‘risks’. We present a thematic discourse analysis of interviews conducted in 2012 with 27 women across Australia who have had breast cancer. Using the lenses of ‘healthism’ and ‘risk management’ in this analysis, we identified a cultural discourse of ‘individual responsibility and empowerment’. Women utilised this discourse while ‘accounting’ for their illness by engaging in ‘health talk’ and ‘risk talk’. While many women emphasised the shock of the diagnosis in light of having been ‘always healthy’, others expressed the inevitability of ‘risk’ on the basis of individual behaviours or genetic history. This discourse provided women one way to explain and make sense of their illness, potentially enabling them to cope with the fear and uncertainty of breast cancer. Drawing on this discourse, women could also position themselves in socially desirable and empowered ways as responsible health consumers, as self-governing and as taking responsibility in dealing with the illness and remaining vigilant for recurrence. We discuss how this neo-liberal approach can be empowering, but also has the effect of positioning women as primarily responsible for managing their health and their illness.
Áine Regan, Afrodita Marcu, Liran Christine Shan, Patrick Wall, Julie Barnett & Áine McConnon
Understanding how consumers react to what is happening as a crisis evolves is crucial for those charged with risk management and risk communication. Responsibility, blame and accountability are important concepts in any crisis, particularly when consumer confidence has been damaged. In this article, we examine to what extent, and to what effect, responsibility, blame and accountability figure in consumer reactions in the immediate aftermath of a food crisis. The data we draw on in this article is derived from an online engagement study that took place in ‘real time’ as the crisis unfolded. Through this study, we were able to explore how consumers responded to the adulteration of processed beef products with horsemeat in early 2013 in Ireland and the UK. We found that consumers attributed causal responsibility and allocated blame for the adulteration to three factors: the deliberately deceitful practices of the food industry, the complexity of the food supply chain and demand from (other) consumers for cheap food. We found that consumers were willing to begin the process of rebuilding their confidence in the food system and accountability was viewed as the primary means for restoring confidence.
In this article, I develop the social amplification of risk framework focusing on organisational strategies that seek to minimise or conceal certain risks rather than amplifying them. I link this analysis to theoretical work on the social production of ignorance. I draw on data from a case study of the French association of salt producers that explores the ways in which the association with limited resources sought to counteract public health messages that salt posed a risk to health. I show that the association used four main strategies in an attempt to manufacture ignorance in relation to the nutritional risks of salt: indirect communication and dissimulation, denial, diversion and undermining or intimidating opponents. I conclude that these strategies are part of a repertoire of action which is available to many industrial organisations that are trying to counteract public health claims that their products are a danger to health. I argue that it is important to integrate studies of the social amplification and attenuation of risk with analysis of the resources and strategies used to minimise or amplify risk. I suggest that the strategies used by certain powerful actors to minimise or conceal certain health or environmental risks should be analysed more closely in risk studies.
Diana Espírito Santo
This article argues that in Cuban Creole espiritismo practices, ritually generated ‘knowledge’ has ontological, rather than just epistemological, effects, independent of the role of cognition. I will show that knowledge is experienced as a fluid, moving ‘substance’ external to the body that can accumulate, weigh down, hang suspended, and dissipate; it is also responsive to mediums‘ descriptive speech, becoming an object of vision-knowledge at the same time that it is seen and spoken of collectively. I will also show that the circulation of knowledge ‘substances’ should be seen not as metaphorical but as tied to processes of making people, and ask whether knowledge can figure not just as something intersubjective or relational but as something substantive, even physiological.
Dogs in the Moscow Metro, some say, have evolved a unique sentience: they navigate a human-scaled infrastructure and interpret human motives there. Such assertions about dogs, and encounters with them on public transit, invoke Soviet-era moral projects that wove sentiment (‘compassion’) and affect (‘attention’) through technical dreams: to erase material suffering and physical violence, to traverse the globe and the cosmos, to end wars and racisms. Dogs, after all, helped defeat the Nazis and took part in the space race. In the Metro now, their wags and barks stir debate about access and exclusion, resonating across assemblages of materials and meanings, social connections and signs. MetroDogs invite us to theorize the ways people extend connections in the moment well beyond the here-and-now.
Lydia Zacher Dixon
Mexican midwives have long taken part in a broader Latin American trend to promote “humanized birth” as an alternative to medicalized interventions in hospital obstetrics. As midwives begin to regain authority in reproductive health and work within hospital units, they come to see the issue not as one of mere medicalization but of violence and violation. Based on ethnographic fieldwork with midwives from across Mexico during a time of widespread social violence, my research examines an emergent critique of hospital birth as a site of what is being called violencia obstétrica (obstetric violence). In this critique, women are discussed as victims of explicit abuse by hospital staff and by the broader health care infrastructures. By reframing obstetric practices as violent—as opposed to medicalized—these midwives seek to situate their concerns about women’s health care in Mexico within broader regional discussions about violence, gender, and inequality.
Were you born deaf?
Yes, I was born deaf.
How come? You have hearing parents, right? [Being born deaf is usually linked to having deaf parents]
(slightly confused) I don’t know … maybe because of witches.
Ama Korkor [Kwame’s younger deaf sister] told me that she was born hearing.
That is not true, we were all born deaf: me, Kofi Pare, Ama Korkor, Yaa Bomo, and Yaa Aketewa [i.e., his four younger deaf siblings]
James B. Waldram
Traditional or indigenous healing is often assumed to involve rich forms of dialogical and symbolic communication between healer and patient that serve to explain its salience and efficacy. An ethnographic study of Q’eqchi Maya healing in Belize suggests, however, that communication in some forms of indigenous healing may also be minimal and peripheral to treatment and more akin to that of biomedicine than so-called traditional medicine. While communication may still involve symbolic, intercorporeal, and other forms of subtle intersubjective connection, anthropologists often overreach in an effort to portray such healing systems in contradistinction to biomedicine. It is argued here that Q’eqchi healing might best be thought of as a form of empirically based restorative medicine in which communication is purely instrumental to the healer’s task of diagnosing and eliminating pathology and restoring the health of the patient.
Dona Lee Davis, Anita Maurstad & Sarah Dean
Pink t-shirts that proclaim “My horse is my therapist” are for sale in a wide variety of horse-sport catalogues. Literature on the healing power of human–nonhuman animal encounters and the practice of a variety of animal-assisted therapy programs, such as hippotherapy and equine-facilitated therapy, show dramatic growth over the last 30 years. Less attention is paid to the role that horse–human interactions may play in more popular accountings of well-being and impairment among a sample of everyday riders. Analysis of 50 lifecycle narratives, collected from accomplished but nonprofessional equestriennes, demonstrates the complex and ambiguous ways in which women draw from their experience of human–horse relationships as they challenge and transgress the borderlands between pleasure and impairment. Combining the perspectives of multispecies ethnography and medical anthropology that engages the complexities of well-being, analysis is informed by and contributes to recent controversies concerning the medicalization of normality and pleasure in DSM 5.
This article examines appetite loss among married women living in a Delhi slum. Research has shown that through feeding, women in South Asia gain domestic authority and become part of the families into which they marry. I use observations and interviews collected over 14 months in one poor urban community to explore the social dimensions of feeding and abstaining from eating in a context of marital and food insecurity. Results show that women report appetite loss in response to domestic violence, the stress of marital fights, and fears about the dissolution of their marriages. In other instances, women report that they forget to eat because of dedication to caregiving or refuse to eat because of their husbands’ failure to attend to their needs. In the context of this research, I show that food insecurity research would benefit from considering the kinship and gender politics involved in feeding and eating behaviors.
Lance D. Laird, Linda L. Barnes, Jo Hunter-Adams, Jennifer Cochran & Paul L. Geltman
The Arabic miswak (Somali, adayge) is a tooth-cleaning stick from the Salvadora persica plant. In this article, we trace the social life of a “thing,” examining meanings inscribed in the stick brush, drawing on interviews with 82 Somali refugees in Massachusetts and an analysis of local and transnational science and marketing. The miswak toothbrush symbolizes relationships to nature, homeland culture, global Islam, globalizing dental medicine, and the divine as it intersects with the lives of producers, marketers, distributors, and users, creating hybrid cultural forms in new contexts.
Devon E. Hinton, Ria Reis & Joop de Jong
“Thinking a lot” (TAL)—also referred to as “thinking too much”—is a key complaint in many cultural contexts, and the current article profiles this idiom of distress among Cambodian refugees. The article also proposes a general model of how TAL generates various types of distress that then cause PTSD-type psychopathology, a model we refer to as the TAL–PTSD model. As tested in this Cambodian refugee sample, the model is supported by the following: (1) the close connection of TAL to PTSD as shown by odds ratio (OR = 19.6), correlation (r = .86), and factor loading; and (2) the mediation of most of the effect of TAL on PTSD by TAL-caused somatic symptoms, catastrophic cognitions, trauma recall, insomnia, and irritability. The questionnaire used in the present study is provided and can be used to examine TAL in other cultural and global contexts to advance the study of this commonly encountered distress form.
Elisa J. Sobo
U.S. media reports suggest that vastly disproportionate numbers of un- and under-vaccinated children attend Waldorf (private alternative) schools. After confirming this statistically, I analyzed qualitative and quantitative vaccination-related data provided by parents from a well-established U.S. Waldorf school. In Europe, Waldorf-related non-vaccination is associated with anthroposophy (a worldview foundational to Waldorf education)—but that was not the case here. Nor was simple ignorance to blame: Parents were highly educated and dedicated to self-education regarding child health. They saw vaccination as variously unnecessary, toxic, developmentally inappropriate, and profit driven. Some vaccine caution likely predated matriculation, but notable post-enrollment refusal increases provided evidence of the socially cultivated nature of vaccine refusal in the Waldorf school setting. Vaccine caution was nourished and intensified by an institutionalized emphasis on alternative information and by school community norms lauding vaccine refusal and masking uptake. Implications for intervention are explored.
Ruth P. Fitzgerald, Michael Legge & Julie Park
Using a Foucauldian biopower analytic, this article combines insights from several ethnographic research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand. We show that divergent or shared public, private, state, individual, and community moral reasoning styles become highly politicized truth discourses that have the potential to, and at times do, affect one another, modifying a dominant, state-supported, principal-based bioethics framework. The styles of moral reasoning that we identify pivot on an aspirational cultural ideal of the provision of choice to citizens, which is taken as an appropriate position from which to regulate selective reproductive technologies.
Ya’arit Bokek-Cohen & Limor Dina Gonen
The article proposes sociological insights into the sperm banking industry, derived from a qualitative study of extended sperm donor profiles in six large American sperm banks. We content analyzed the extended profiles and baby photos of 120 randomly selected donors who appear in the catalogues. Inspired by Baudrillard’s and Illouz’s writings on the postmodern era, we show how sperm banks de-commodify sperm, personify donations, facilitate the romanticization of the donor–recipient bond, and add an emotional context to the economic transaction. The donors’ extended profiles constitute a simulacrum of a living male partner and fulfill recipients’ fantasies. This creates a powerful reenchantment mechanism counterbalancing the anonymity and disenchantment characterizing donor insemination technology in particular and the postmodern spirit in general.
Type 2 diabetes within UK South Asian populations has increasingly become the focus of health science discourse. Growing rates across the globe have been a public health concern for a number of decades. Diabetes discourse has focused on lifestyle and a generalized idea of “cultural” factors as contributory factors. These have become part of what I identify as a South Asian diabetes “risk-package.” This risk formulation is extended to an additional genetic discourse which generates new causal explanations for this heightened “risk.” South Asian groups are already the subject of discursive, racialized risk constructions, which positions them as active owners of “risky culture.” The mobilization of genetic arguments repositions them as additionally passive owners of “risky genes.” I argue that the use of racial categories in genetic diabetes science, despite the relative uncertainty and ambiguity of scientific knowledge claims, is problematic and requires critical re-situating.
Ben Merriman & Santiago J. Molina
In recent years, human genetic research has developed rapidly, and the cost of sequencing and computational technology continues to decline. This research has also been pushed forward by a major organizational innovation: the development of large, open-access databases of human gene sequences or biospecimens known as community resource projects. This article describes a challenge for the governance of these projects: conceptions of population vary significantly across organizational contexts. This makes it difficult to manage risk appropriately, as measures intended to address hazards to one kind of population may be inadequate for others. Unstable conceptions of population may also make it difficult to identify the stakeholders interested in the governance of these projects. This argument is developed by examining two cases, the International HapMap Project and 1000 Genomes Project, which make use of at least six distinct conceptions of population in different organizational segments.
The UK’s publically available blood stem cell infrastructure has undergone significant transformation in recent years as umbilical cord blood has joined adult donors as a viable clinical stem cell source. This paper describes the development of a collaborative governance arrangement between the UK’s two domestic providers of blood stem cells: a public body and a charity. The paper argues that the collaborators, who stand to benefit from the alignment, legitimize their work through appeals to public good. It suggests that appeals to buy British obscure an inevitable requirement to cultivate international, networked stem cell exchange; the paper also explores collaborators’ reinforcement of a supposed connection between human leukocyte antigen tissue type and ethnicity through claiming that the UK’s ethnic minorities face an “unmet need.” By way of this, the paper demonstrates the interconnection of collaborators’ institutional interests with concerns for national health equity.
In 1990, Chile transitioned to democracy after 17 years of military rule. The new democracy built the country’s first environmental institutions and began efforts to revitalize science, among them attempts to connect scientific expertise to public decision-making. Just over a decade into these efforts, conflicts over the environmental impacts of large industrial projects began to multiply. These environmental conflicts were often also credibility contests, where the authority of science to speak to public issues was contested. Two such conflicts, a gold mine called Pascua Lama and a hydroelectric project called HidroAysén, enrolled several scientific teams, yet in each case the state made its final decision on each project autonomously from science. Though some scientists became central participants in each conflict, carving out for themselves access to needed resources that they used to practice ever-narrower forms of science, their credibility was called into question by many of their scientific colleagues. Chile’s scientific community fractured over how to define credible science. Divisive and decisive issues included the source of funding, ethics, access to resources, and being local. Although some scientists and non-scientists used boundary work to try to affirm the authority of science, no stable map of scientific credibility resulted from these efforts. Chile’s new democracy is more plural than its recent military dictatorship but still lacks adequate spaces in which to negotiate what counts as credible science. These experiences highlight the need to better understand how science fares through regime transitions and what it contributes to emerging democracies.
Catharina Landström, Richard Hauxwell-Baldwin, Irene Lorenzoni & Tee Rogers-Hayden
Frequent claims that publics ‘misunderstand’ science ignore the contested definition of scientific uncertainty itself. Scientific uncertainty means different things in the natural sciences, social sciences and the humanities, while public controversies show that interpretations of scientific uncertainty have different implications for policy and decision-making. This prompts analysis of the ways that experts view scientific uncertainty and how they characterise the (mis)understandings of this uncertainty by policy-makers, media and publics. Experts from diverse academic fields define scientific uncertainty differently depending on their disciplinary background. For example, mathematics provides experts from the natural sciences with a practice language that facilitates communication with those sharing this cultural competence, but it does not suffice for engaging with wider audiences. Further, experts’ views of diverse publics come across as folk theories, in Arie Rip’s terms, which, compiled from disparate pieces of information, can be used to fill a gap in the knowledge about publics.
In the winter of 1849–1850 in Königsberg, German physiologist Hermann von Helmholtz (1821–1894) conducted pioneering measurements concerning the propagation speed of stimulations in the living nerve. While recent historians of science have paid considerable attention to Helmholtz’s uses of the graphic method, in particular his construction of an instrument called “myographion,” this paper draws attention to the inscription surfaces that he used in effective ways for capturing and transmitting his findings. Against the background of recent archival findings, I show that Helmholtz used isinglass copies of his graphical recordings in order to communicate the basic principle of previous measurements to the academic public. As the correspondence with his Berlin-based friend and colleague Emil du Bois-Reymond (1818–1896) and the subsequent development of the myographion make clear, these curves were not meant as measurements but functioned as demonstrations. In other words, Helmholtz’s curves did provide “images of precision” (Olesko and Holmes 1993) – but they were not precise images.
Glass vessels such as flasks and test tubes play an ambiguous role in the historiography of modern laboratory research. In spite of the strong focus on the role of materiality in the last decades, the scientific glass vessel – while being symbolically omnipresent – has remained curiously neglected in regard to its materiality. The popular image or topos of the transparent, neutral, and quasi-immaterial glass container obstructs the view of the physico-chemical functionality of this constitutive inner boundary in modern laboratory environments and its material historicity. In order to understand how glass vessels were able to provide a stable epistemic containment of spatially enclosed experimental phenomena in the new laboratory ecologies emerging in the nineteenth and early twentieth century, I will focus on the history of the material standardization of laboratory glassware. I will follow the rise of a new awareness for measurement errors due to the chemical agency of experimental glass vessels, then I will sketch the emergence of a whole techno-scientific infrastructure for the improvement of glass container quality in late nineteenth-century Germany. In the last part of my argument, I will return to the laboratory by looking at the implementation of this glass reform that created a new oikos for the inner experimental milieus of modern laboratory research.
Alexander von Schwerin
This paper brings together the history of risk and the history of DNA repair, a biological phenomenon that emerged as a research field in between molecular biology, genetics, and radiation research in the 1960s. The case of xeroderma pigmentosum (XP), an inherited hypersensitivity to UV light and, hence, a disposition to skin cancer will be the starting point to argue that, in the 1970s and 1980s, DNA repair became entangled in the creation of new models of the human body at risk – what is here conceptually referred to as the vulnerability aspect of body history – and new attempts at cancer prevention and enhancement of the body associated with the new flourishing research areas of antimutagenesis and anticarcinogenesis. The aim will be to demonstrate that DNA repair created special attempts at disease prevention: molecular enhancement, seeking to identify means to increase the self-repair abilities of the body at the molecular level. Prevention in this sense meant enhancing the body’s ability to cope with the environmental hazards of an already toxic world. This strategy has recently been adopted by the beauty industry, which introduced DNA care as a new target for skin care research and anti-aging formulas.
The sect of ancient Greek physicians who believed that medical knowledge came from personal experience also read the Hippocratic Corpus intensively. While previous scholarship has concentrated on the contributions of individual physicians to ancient scholarship on Hippocrates, this article seeks to identify those characteristics of Empiricist reading methodology that drove an entire medical community to credit Hippocrates with medical authority. To explain why these physicians appealed to Hippocrates’ authority, I deploy surviving testimonia and fragments to describe the skills, practices, and ideologies of the reading community of ancient Empiricist physicians over the one-hundred year period 175 to 75 BCE. The Empiricist conception of testimony taken on trust operative within that reading community elided the modern distinction between personal and institutional targets of trust by treating Hippocratic writings as revelatory of the moral character of Hippocrates as an author. Hippocrates’ moral character as an honest witness who accurately observed empirical phenomena aligned with the epistemic virtues of an empirical medical community who believed that medical knowledge came from personal experience. So I argue that Empiricist reading culture constructed a moral authority of honesty and accuracy from Hippocratic writings, enlarged the personal authority of Hippocrates among medical readers, and contributed to the development of Hippocratism.
This paper examines the intertwined relations between eugenics and medical genetics from a Swedish perspective in the 1940s and 1950s. The Swedish case shows that a rudimentary form of genetic counseling emerged within eugenic practices in the applications of the Swedish Sterilization Act of 1941, here analyzed from the phenomenon of “heredophobia” (ärftlighetsskräck). At the same time genetic counseling also existed outside eugenic practices, within the discipline of medical genetics. The paper argues that a demand for genetic counseling increased in the 1940s and 1950s in response to a sense of reproductive responsibility engendered by earlier eugenic discourse. The paper also questions the claim made by theoreticians of biopolitics that biological citizens have emerged only during the last decades, especially in neoliberal societies. From the Swedish case it is possible to argue that this had already happened earlier in relation to the proliferation of various aspects of eugenics to the public.
Cliodhna O’Connor & Helene Joffe
In the burgeoning debate about neuroscience’s role in contemporary society, the issue of brain optimization, or the application of neuroscientific knowledge and technologies to augment neurocognitive function, has taken center stage. Previous research has characterized media discourse on brain optimization as individualistic in ethos, pressuring individuals to expend calculated effort in cultivating culturally desirable forms of selves and bodies. However, little research has investigated whether the themes that characterize media dialogue are shared by lay populations. This article considers the relationship between the representations of brain optimization that surfaced in (i) a study of British press coverage between 2000 and 2012 and (ii) interviews with forty-eight London residents. Both data sets represented the brain as a resource that could be manipulated by the individual, with optimal brain function contingent on applying self-control in one’s lifestyle choices. However, these ideas emerged more sharply in the media than in the interviews: while most interviewees were aware of brain optimization practices, few were committed to carrying them out. The two data sets diverged in several ways: the media’s intense preoccupation with optimizing children’s brains was not apparent in lay dialogue, while interviewees elaborated beliefs about the underuse of brain tissue that showed no presence in the media. This article considers these continuities and discontinuities in light of their wider cultural significance and their implications for the media–mind relationship in public engagement with neuroscience.
Sara Tocchetti & Sara Angeli Aguiton
Biotechnology’s promises has been widely recognized as a major enterprise accelerating the commodification of the biological. After the 9/11 events and the subsequent anthrax letters, biotechnologies have additionally been described as contributing to the construction of biosecurity risks. This paper proposes to investigate the collaboration between the FBI and the DIYbio (Do-It-Yourself biology) network as a case study illustrating the productive entanglement of biological risks and promises. To do so, the paper explores the social construction of risks and promises associated with the vision of distributed biotechnologies as enacted in this collaboration. We argue that the FBI needs to police the DIYbio network in order to disseminate a specific notion of bioterrorist risk, while, in a counter-intuitive manner, the DIYbio network benefits from being policed by the FBI as it helps them disseminate their socio-technological vision. If the entanglement of technoscientific risks and promises is a well established finding of the STS literature, our case study suggests that such entanglement now additionally comprises the sphere of biosecurity and the promises of a distributed biotechnology available to everyone.
Helena Machado & Susana Silva
The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile to be included in the Portuguese forensic DNA database. The analysis is undertaken from the perspective of biological citizenship and the simultaneous empowering and disempowering effects of surveillance. The results indicate a pragmatic ethical framework that is linked to the cultural and emotional elements of altruism, resistance, stigma, and social representations of what is beneficial or harmful to the individual and to society. These subjectivities are anchored in commonplace images and metaphors for genetics, DNA, and forensic science that circulate in the messages transmitted by the media which pervade everyday life; hierarchies of trust in science and the justice system; and moral categories associated with the individual self-judgment in relation to crime, surveillance, and social order.
This paper challenges conventional narratives on the role of international non-governmental organisations (INGOs) in the delivery of health services in Tanzania. Adopting an historical gaze which focuses on the 1960s to mid-1980s the paper argues that the ‘franchise state’ in the Tanzanian health system was not created by collusion between international donors and INGOs, underpinned by a set of health sector reforms that advocated the use of non-state actors; but was rather the legacy of the colonial health system bequeathed to the post-independence state. It was a system in which voluntary non-state actors (but, importantly, not INGOs) were already entrenched as key providers; and in which many of the features of the franchise state – fragmentation, structural weaknesses, lack of accountability to users – were already long established. But if INGOs did not create these features, as their critics attest, they did contribute to the maintenance and extension of these features. The short-term perspectives of NGOs, their small-scale piecemeal engagement, and the extra demands they placed upon their voluntary actor partners, left little scope for the development of sustainable, national and accountable solutions to the health needs of the country. In exploring these ideas, the paper contributes to a more nuanced understanding of the path dependency that created Tanzania’s health system. The analysis also contributes to a deepening of the understanding of the make-up of the voluntary sector beyond a narrow gaze on the institution of the INGO.
Chimaraoke O. Izugbara, Carolyne Egesa & Rispah Okelo
Public health discourses on safe abortion assume the term to be unambiguous. However, qualitative evidence elicited from Kenyan women treated for complications of unsafe abortion contrasted sharply with public health views of abortion safety. For these women, safe abortion implied pregnancy termination procedures and services that concealed their abortions, shielded them from the law, were cheap and identified through dependable social networks. Participants contested the notion that poor quality abortion procedures and providers are inherently dangerous, asserting them as key to women’s preservation of a good self, management of stigma, and protection of their reputation, respect, social relationships, and livelihoods. Greater public health attention to the social dimensions of abortion safety is urgent.
Isabelle Ville & Véronique Mirlesse
Prenatal diagnosis (PND) has gradually established itself as part of the pregnancy monitoring process, with a view to reducing the number of births of children exposed to disability by combining the use of biomedical tools with laws that authorise abortion in cases of foetal pathology. This article looks at how laws which vary from one country to another modulate the way in which PND practices are organised on a daily basis, determine the discourse of practitioners and lead them to adopt specific stances during prenatal consultations with couples coping with a foetal anomaly. We present a comparative ethnographic study, which took place between 2009 and 2011 in France and Brazil, in reference units, based on observation of consultations, professional meetings, and interviews with health practitioners. The fact that access to abortion due to foetal pathology is possible in France, and criminalised in Brazil, conditions how doctors analyse the framework of their medical practice and approach the issue of disability with couples during consultations. In France, practitioners would appear to be satisfied with a professional framework that they themselves created. Faced with prognostic uncertainty, the legal obligation to inform encourages them to discuss all of the potential complications of the diagnosed anomalies and leads them to provide probabilistic information about the life of the child to be, supported by evidence-based medicine. In Brazil, in the public service, the lack of access to abortion has created a malaise among practitioners who criticise this impediment to the objective nature of their practice and to the quality of the information that they provide. Some use prognostic uncertainty to direct the thoughts of women and couples towards the dynamics proper to each individual human trajectory within a given family and a specific social environment.
Paul H. Thibodeau, Victoria L. Perko & Stephen J. Flusberg
In 2013, the American Medical Association made the controversial decision to classify obesity as a “disease” in the hopes of encouraging research, reducing stigma, and ultimately lowering the prevalence of the condition. Critics argued that the disease label would reduce feelings of personal responsibility among the obese and therefore discourage healthy self-regulation, a possibility that has received some recent support in the psychological literature. However, public health issues such as obesity are complex and depend not only on personal action, but also on wider societal trends such as social policy interventions. In the present study, we systematically investigated the relationship between four narrative classifications of obesity (“sin”, “addiction”, “disorder” and “environment”) and support for a variety of policy interventions designed to address the issue. An initial norming study revealed that the obesity narratives differed reliably in how much they attributed blame for the condition to the individual versus the environment. A correlational study showed that participants who agreed with narratives that blamed the individual were more likely to support policy interventions that penalized people for being overweight while participants who agreed with narratives that blamed the environment were more likely to support policy interventions designed to protect people suffering from obesity. A follow-up experiment revealed that these narratives had causal power as well: participants exposed to just one of the narratives were more likely to support policy interventions consistent with the blame attribution of the narrative for both obesity as well as anorexia. Individual differences in political ideology and personal experience with weight issues also influenced agreement with the narratives and support for particular policy interventions across these studies. These findings suggest that public messaging campaigns that utilize extended narratives may be a useful tool for increasing support for effective policy interventions.
Sudhanshu Handa, Amber Peterman, Carolyn Huang, Carolyn Halpern, Audrey Pettifor & Harsha Thirumurthy
There is promising evidence that poverty-targeted cash transfer programs can have positive impacts on adolescent transitions to adulthood in resource poor settings, however existing research is typically from small scale programs in diverse geographic and cultural settings. We provide estimates of the impact of a national unconditional cash transfer program, the Kenya Cash Transfer for Orphans and Vulnerable Children, on pregnancy and early marriage among females aged 12 to 24, four years after program initiation. The evaluation was designed as a clustered randomized controlled trial and ran from 2007 to 2011, capitalizing on the existence of a control group, which was delayed entry to the program due to budget constraints. Findings indicate that, among 1549 females included in the study, while the program reduced the likelihood of pregnancy by five percentage points, there was no significant impact on likelihood of early marriage. Program impacts on pregnancy appear to work through increasing the enrollment of young women in school, financial stability of the household and delayed age at first sex. The Kenyan program is similar in design to most other major national cash transfer programs in Eastern and Southern Africa, suggesting a degree of generalizability of the results reported here. Although the objective of the program is primarily poverty alleviation, it appears to have an important impact on facilitating the successful transition of adolescent girls into adulthood.
Maria Paola Bertone & Sophie Witter
The need for evidence-based practice calls for research focussing not only on the effectiveness of interventions and their translation into policies, but also on implementation processes and the factors influencing them, in particular for complex health system policies. In this paper, we use the lens of one of the health system’s ‘building blocks’, human resources for health (HRH), to examine the implementation of official policies on HRH incentives and the emergence of informal practices in three districts of Sierra Leone. Our mixed-methods research draws mostly from 18 key informant interviews at district level. Data are organised using a political economy framework which focuses on the dynamic interactions between structure (context, historical legacies, institutions) and agency (actors, agendas, power relations) to show how these elements affect the HRH incentive practices in each district. It appears that the official policies are re-shaped both by implementation challenges and by informal practices emerging at local level as the result of the district-level dynamics and negotiations between District Health Management Teams (DHMTs) and nongovernmental organisations (NGOs). Emerging informal practices take the form of selective supervision, salary supplementations and per diems paid to health workers, and aim to ensure a better fit between the actors’ agendas and the incentive package. Importantly, the negotiations which shape such practices are characterised by a substantial asymmetry of power between DHMTs and NGOs. In conclusion, our findings reveal the influence of NGOs on the HRH incentive package and highlight the need to empower DHMTs to limit the discrepancy between policies defined at central level and practices in the districts, and to reduce inequalities in health worker remuneration across districts. For Sierra Leone, these findings are now more relevant than ever as new players enter the stage at district level, as part of the Ebola response and post-Ebola reconstruction.
Jane Farmer, Margaret Currie, Amanda Kenny & Sarah-Anne Munoz
This article explores what happened, over the longer term, after a community participation exercise to design future rural service delivery models, and considers perceptions of why more follow-up actions did or did not happen. The study, which took place in 2014, revisits three Scottish communities that engaged in a community participation research method (2008–2010) intended to design rural health services. Interviews were conducted with 22 citizens, healthcare practitioners, managers and policymakers all of whom were involved in, or knew about, the original project. Only one direct sustained service change was found – introduction of a volunteer first responder scheme in one community. Sustained changes in knowledge were found. The Health Authority that part-funded development of the community participation method, through the original project, had not adopted the new method. Community members tended to attribute lack of further impact to low participation and methods insufficiently attuned to the social nuances of very small rural communities. Managers tended to blame insufficient embedding in the healthcare system and issues around power over service change and budgets. In the absence of convincing formal community governance mechanisms for health issues, rural health practitioners tended to act as conduits between citizens and the Health Authority. The study provides new knowledge about what happens after community participation and highlights a need for more exploration.
Kate Sweeny, Sara E. Andrews, S. Katherine Nelson & Megan L. Robbins
Guided by the uncertainty navigation model, this study examined experiences of uncertainty associated with trying to conceive and identified predictors of this experience using a multi-method approach.
429 American adults from Amazon’s Mechanical Turk who had a child under age three completed online questionnaires regarding their experiences trying to conceive, including recollections of psychological adjustment, use of coping strategies, and individual and situational variability. Then they provided open-ended reflections of their experience trying to conceive. Participants’ descriptions were analyzed for word use using LIWC, a text-analysis software program, to obtain an unobtrusive and pseudo-observational measure of coping resources.
Consistent with the uncertainty navigation model, recollections of distress as individuals tried to conceive were associated with lower levels of dispositional optimism; intolerance of uncertainty; fewer social, emotional, and cognitive resources (reflected in word use); placing greater importance on conception; lower risk for infertility; and less searching for meaning in life.
This study revealed many novel insights regarding the experience of trying to conceive, including protective factors and vulnerabilities that may buffer or heighten the distress associated with this experience.
Joanna Petrasek MacDonald, Ashlee Cunsolo Willox, James D. Ford, Inez Shiwak, Michele Wood, IMHACC Team & Rigolet Inuit Community Government
The Canadian Arctic is experiencing rapid changes in climatic conditions, with implications for Inuit communities widely documented. Youth have been identified as an at-risk population, with likely impacts on mental health and well-being. This study identifies and characterizes youth-specific protective factors that enhance well-being in light of a rapidly changing climate, and examines how climatic and environmental change challenges these. In-depth conversational interviews were conducted with youth aged 15–25 from the five communities of the Nunatsiavut region of Labrador, Canada: Nain, Hopedale, Postville, Makkovik, and Rigolet. Five key protective factors were identified as enhancing their mental health and well-being: being on the land; connecting to Inuit culture; strong communities; relationships with family and friends; and staying busy. Changing sea ice and weather conditions were widely reported to be compromising these protective factors by reducing access to the land, and increasing the danger of land-based activities. This study contributes to existing work on Northern climate change adaptation by identifying factors that enhance youth resilience and, if incorporated into adaptation strategies, may contribute to creating successful and effective adaptation responses.
Graham P. Martin, Lorna McKee & Mary Dixon-Woods
Formal metrics for monitoring the quality and safety of healthcare have a valuable role, but may not, by themselves, yield full insight into the range of fallibilities in organizations. ‘Soft intelligence’ is usefully understood as the processes and behaviours associated with seeking and interpreting soft data—of the kind that evade easy capture, straightforward classification and simple quantification—to produce forms of knowledge that can provide the basis for intervention. With the aim of examining current and potential practice in relation to soft intelligence, we conducted and analysed 107 in-depth qualitative interviews with senior leaders, including managers and clinicians, involved in healthcare quality and safety in the English National Health Service. We found that participants were in little doubt about the value of softer forms of data, especially for their role in revealing troubling issues that might be obscured by conventional metrics. Their struggles lay in how to access softer data and turn them into a useful form of knowing. Some of the dominant approaches they used risked replicating the limitations of hard, quantitative data. They relied on processes of aggregation and triangulation that prioritised reliability, or on instrumental use of soft data to animate the metrics. The unpredictable, untameable, spontaneous quality of soft data could be lost in efforts to systematize their collection and interpretation to render them more tractable. A more challenging but potentially rewarding approach involved processes and behaviours aimed at disrupting taken-for-granted assumptions about quality, safety, and organizational performance. This approach, which explicitly values the seeking out and the hearing of multiple voices, is consistent with conceptual frameworks of organizational sensemaking and dialogical understandings of knowledge. Using soft intelligence this way can be challenging and discomfiting, but may offer a critical defence against the complacency that can precede crisis.
Mengzhu Fu, Daniel J. Exeter & Anneka Anderson
Census-based deprivation indices have been widely used in Aotearoa/New Zealand, Canada and UK to measure area-based socio-economic inequalities. This paper examines the indicators used in census-based area deprivation indices using a political ecology approach. We question whether the current indicators of deprivation derived from census data are meaningful for the all age groups and minority groups in the population, with a particular focus on deprivation indicators used in New Zealand, Canada and the United Kingdom. We comparatively reviewed methodological papers and reports that describe the indicators of deprivation in Aotearoa/New Zealand, Canada and the UK from 1975 to 2014. We consider the relationship between the notion of standards of living and measurements of deprivation and explore how hegemonic cultural constructs are implicit in measures of deprivation that privilege a Eurocentric, ageist and gender normative construction of statistics.
We argue for more political ecological analyses to studying the relationship between social inequalities, geographies, health inequities and political economy to transform structures of oppression and inequality. This requires turning the analytical gaze on the wealthy and privileged instead of defaulting into deficit models to account for inequality. Studies of deprivation and inequality would benefit from understanding the processes and operations of power in the (re)production of socio-economic and health inequities to inform holistic strategies for social justice.
Gerardo Otero, Gabriela Pechlaner, Giselle Liberman & Efe Gürcan
This paper discusses increasing differentiation of U.S. dietary components by socioeconomic strata and its health implications. While upper-income groups have had increasing access to higher-quality foods, lower-to-middle-income class diets are heavily focused on “energy-dense” fares. This neoliberal diet is clearly associated with the proliferation of obesity that disproportionately affects the poor. We provide a critical review of the debate about obesity from within the critical camp in food studies, between individual-focused and structural perspectives. Using official data, we show how the US diet has evolved since the 1960s to a much greater emphasis on refined carbohydrates and vegetable oils. Inequality is demonstrated by dividing the population into households-income quintiles and how they spend on food. We then introduce our Neoliberal Diet Risk Index (NDR), comprised of measures of food-import dependency, the Gini coefficient, rates of urbanization, female labor-force participation, and economic globalization. Our index serves to measure the risk of exposure to the neoliberal diet comparatively, across time and between nations. We conclude that only a societal actor like the state can redirect the food-production system by modifying its agricultural subsidy policies. Inequality-reducing policies will make the healthier food involved in such change widely available for all.
Sarah L. Bell, Cassandra Phoenix, Rebecca Lovell & Benedict W. Wheeler
Recent research suggests coastal environments may promote human health and wellbeing. This article explores the diverse coastal experiences sought out by residents of two towns in south west England to promote and preserve their personal wellbeing in the context of their everyday lives. It draws on the findings of an in-depth interpretive study conducted from May to November 2013 that examined the relative contribution of varied green and blue space experiences to individual wellbeing through the life course. Personalised activity maps produced using accelerometer and Global Positioning System (GPS) data were used to guide in-depth geo-narrative interviews with a purposive sample of 33 participants. This was combined with a subset of nine case study go-along interviews in places deemed therapeutic by the participants themselves, offering deeper insight into the lived experiences and relationships playing out within such places. Situated in a novel adaptation of the therapeutic landscapes framework, this article explores how symbolic, achievement-oriented, immersive and social experiences contributed to participants’ sense of wellbeing in their local coastal areas. Participants expressed particularly strong and often enduring connections to the local coastline, with different coastal stretches perceived to cater for varied therapeutic needs and interests, at multiple scales and intensities. The findings suggest the need for greater acknowledgement of people’s emotional, deeply embodied and often shared connections to the coast within coastal management policy and practice, both nationally and internationally. Importantly, such efforts should recognise the fluid, dynamic nature of this land-sea boundary, and the valued therapeutic experiences linked to this fluidity.
Sandra H. Sulzer
A diagnosis of Borderline Personality Disorder (BPD) often signals the quintessential “difficult patient” status to clinicians, with at least one scholar arguing the condition itself was created to name and group difficult patients. While patients who are deemed difficult are often dispreferred for care, does this have an impact on their overall status as medicalized patients who have successfully achieved a sick role? This study relies on (n = 22) in-depth interviews with mental health clinicians in the United States from 2012 to evaluate how they describe patients with BPD, how the diagnosis of BPD affects the treatment clinicians are willing to provide, and the implications for patients. My findings suggest patients with BPD are routinely labeled “difficult,” and subsequently routed out of care through a variety of direct and indirect means. This process creates a functional form of demedicalization where the actual diagnosis of BPD remains de jure medicalized, but the de facto or treatment component of medicalization is harder to secure for patients.
Kate Hampshire, Gina Porter, Samuel Asiedu Owusu, Simon Mariwah, Albert Abane, Elsbeth Robson, Alister Munthali, Ariane DeLannoy, Andisiwe Bango, Nwabisa Gunguluza & James Milner
The African communications ‘revolution’ has generated optimism that mobile phones might help overcome infrastructural barriers to healthcare provision in resource-poor contexts. However, while formal m-health programmes remain limited in coverage and scope, young people are using mobile phones creatively and strategically in an attempt to secure effective healthcare. Drawing on qualitative and quantitative data collected in 2012–2014 from over 4500 young people (aged 8–25 y) in Ghana, Malawi and South Africa, this paper documents these practices and the new therapeutic opportunities they create, alongside the constraints, contingencies and risks. We argue that young people are endeavouring to lay claim to a digitally-mediated form of therapeutic citizenship, but that a lack of appropriate resources, social networks and skills (‘digital capital’), combined with ongoing shortcomings in healthcare delivery, can compromise their ability to do this effectively. The paper concludes by offering tentative suggestions for remedying this situation.
Kirsten Bell, Simone Dennis, Jude Robinson & Roland Moore
Throughout the twentieth century, packaging was a carefully cultivated element of the appeal of the cigarette. However, the tobacco industry’s control over cigarette packaging has been steadily eroded through legislation that aims to rebrand the packet from a desirable to a dangerous commodity—epitomized in Australia’s introduction of plain packaging in 2012. Evident in both the enactment of cigarette packaging legislation and industry efforts to overturn it is the assumption that packets do things—i.e. that they have a critical role to play in either promoting or discouraging the habit. Drawing on 175 ethnographic interviews conducted with people smoking in public spaces in Vancouver, Canada; Canberra, Australia; Liverpool, England; and San Francisco, USA, we produce a ‘thick description’ of smokers’ engagements with cigarette packets. We illustrate that despite the very different types of cigarette packaging legislation in place in the four countries, there are marked similarities in the ways smokers engage with their packets. In particular, they are not treated as a purely visual sign; instead, a primary means through which one’s own cigarette packet is apprehended is by touch rather than by sight. Smokers perceive cigarette packets largely through the operations of their hands—through their ‘handiness’. Thus, our study findings problematize the assumption that how smokers engage with packets when asked to do so on a purely intellectual or aesthetic level reflects how they engage with packets as they are enfolded into their everyday lives.
Nicole Ackermann, Melody S. Goodman, Keon Gilbert, Cassandra Arroyo-Johnson & Marcello Pagano
Previous analyses of Stand Your Ground (SYG) cases have been primarily descriptive. We examine the relationship between race of the victim and conviction of the defendant in SYG cases in Florida from 2005 to 2013. Using a regression analytic approach, we allow for simultaneous examination of multiple factors to better understand existing interrelationships. Data was obtained from the Tampa Bay Times SYG database (237 cases) which was supplemented with available online court documents and/or news reports. After excluding cases which were, still pending as of January 2015; had multiple outcomes (because of multiple suspects); and missing information on race of victim and weapon of victim, our final analytic sample has 204 cases. We chose whether the case resulted in a conviction as the outcome. We develop logistic regression models using significant bivariate predictors as candidates. These include race of the victim (White, non-White), whether the defendant could have retreated from the situation, whether the defendant pursued the victim, if the victim was unarmed, and who was the initiator of the confrontation. We find race of the victim to be a significant predictor of case outcome in this data set. After controlling for other variables, the defendant is two times (OR = 2.1, 95% CI [1.07, 4.10]) more likely to be convicted in a case that involves White victims compared to those involving non-White victims. Our results depict a disturbing message: SYG legislation in Florida has a quantifiable racial bias that reveals a leniency in convictions if the victim is non-White, which provides evidence towards unequal treatment under the law. Rather than attempting to hide the outcomes of these laws, as was done in Florida, other states with SYG laws should carry out similar analyses to see if their manifestations are the same as those in Florida, and all should remediate any injustices found.
Differential access to healthy foods has been hypothesized to contribute to disparities in eating behaviors and health outcomes. While food deserts have been researched extensively in developed Anglophone countries, evidence from low- and middle-income countries is still scarce. In Mexico, prevalence of obesity is among the highest worldwide. As obesity has increased nationally and become a widespread public health issue, it is becoming concentrated in the low-income population. This mixed-methods study uses a multidimensional approach to analyze food environments in a low-, middle-, and high-income community in a Mexican city. The study advances understanding of the role that food environments may play in shaping eating patterns by analyzing the density and proximity of food outlet types as well as the variety, quantity, quality, pricing, and promotion of different foods. These measures are combined with in-depth qualitative research with families in the communities, including photo elicitation, to assess perceptions of food access. The central aims of the research were to evaluate physical and economic access and exposure to healthy and unhealthy foods in communities of differing socioeconomic status as well as participants’ subjective perceptions of such access and exposure. The findings suggest a need to reach beyond a narrow focus on food store types and the distance from residence to grocery stores when analyzing food access. Results show that excessive access and exposure to unhealthy foods and drinks, or “food swamps,” may be a greater concern than food deserts for obesity-prevention policy in Mexico.
In this paper, I examine how clinicians at a clinic for developmental disabilities in the United States determine whether children being evaluated for autism spectrum disorder (ASD) showed symptoms of that condition. Drawing on a convenience sample of 61 audio and video recorded case conferences from two time periods (1985 and 2011–15), and combining Conversation Analysis with insights from Actor Network Theory, I find that clinicians describe (via a representational practice called “citation”) children’s conduct in ways that advance diagnostic claims. More specifically, they portray key actants in the assessment process in patterned ways: the test instrument is represented as a neutral tool of measurement, the clinician as administrator and instructor; and the child as the focal figure whose conduct is made to appear independent of the other participants and suggestive of diagnostic symptoms. These tacit representational conventions conform to and reproduce the assumptions of standardized testing, according to which clinicians and tests are to be neutral arbiters of the child’s abilities, and thereby provide for objective, warrantable findings. At the same time, however, by designing representations around the child’s symptomatic conduct in this way, clinicians may minimize or elide their own contributions, and those of the test instrument, to the child’s performance, and thereby make the child alone appear responsible for what are, in fact, interactionally-occasioned behaviors.
Those who undergo health screening often experience physical and emotional effects as a result of the screening process. However, the effects of health screening go beyond these physical and mental complications, often having profound social effects for those who are screened. This study explores the social implications of health screening for people who undergo it and are designated as being at risk for potential disease. Through a qualitative analysis of the experiences of individuals with elevated cholesterol levels and men with elevated prostate-specific antigen (PSA) levels, this research offers a description of the experience of being at risk, identifying three primary components: increased medical contact, a restructuring of everyday routines and altered social relationships. Whereas the at-risk health status engendered by current clinical approaches to screening and surveillance has been characterised as proto-disease, this study develops a companion definition of proto-illness to characterise the social experience of life with an identified health risk. Those who are at risk act in ways that are similar to those who are ill. The concept of proto-illness implies that the experience of risk is parallel to the experience of illness and contributes to the sociology of medical screening by establishing a much needed bridge between the two experiences.
Paul R Ward, Cushla Coffey & Samantha Meyer
Colorectal cancer (CRC) has the second highest cancer prevalence and mortality rates in Australia. The Australian National Bowel Cancer Screening Program (NBCSP) aims to increase early detection of CRC by offering free faecal occult blood testing. The NBCSP aims to offer choice to consumers about whether or not to participate in screening. This article presents data on trust, choice and perceived obligation to participate in the NBCSP by population groups with low uptake. A qualitative study was undertaken in South Australia. We interviewed 94 people from four culturally distinct groups: Greek, Iranian, Anglo-Australian and Indigenous peoples. This article demonstrates the complexity of factors shaping the choice, or lack thereof, to participate in the NBCSP. Informed choice is based on adequate knowledge, although this varied among our participants, highlighting the need for more health education in appropriate languages. An obligation to participate was found in the Iranian and Anglo-Australian groups and resulted from an established personal relationship with the doctor, a sense of duty, the acknowledgement of government investment and appreciation. Overall, this article makes a link between trust, choice and obligation, adding to literature on the sociology of trust and medical screening and highlighting important issues in the need of a policy and practice to improve CRC screening rates.
Daryl Martin, Sarah Nettleton, Christina Buse, Lindsay Prior & Julia Twigg
Sociologists of health and illness have tended to overlook the architecture and buildings used in health care. This contrasts with medical geographers who have yielded a body of work on the significance of places and spaces in the experience of health and illness. A review of sociological studies of the role of the built environment in the performance of medical practice uncovers an important vein of work, worthy of further study. Through the historically situated example of hospital architecture, this article seeks to tease out substantive and methodological issues that can inform a distinctive sociology of healthcare architecture. Contemporary healthcare buildings manifest design models developed for hotels, shopping malls and homes. These design features are congruent with neoliberal forms of subjectivity in which patients are constituted as consumers and responsibilised citizens. We conclude that an adequate sociology of healthcare architecture necessitates an appreciation of both the construction and experience of buildings, exploring the briefs and plans of their designers, and observing their everyday uses. Combining approaches and methods from the sociology of health and illness and science and technology studies offers potential for a novel research agenda that takes healthcare buildings as its substantive focus.
Nicolas Henckes & Michael Nurok
This article examines the way that intense emotions, both positive and negative, are collectively regulated at work by pre-hospital emergency teams. We analyse the collective strategies and solutions that are developed in daily medical work by teams and individuals with a view to furthering the action. After a review of the literature on emotion work in work collectives, we discuss the nature of pre-hospital emergency work and the role of emotions in this work. We then examine the collective management of both disruptive and desired emotions by teams during interventions. The last section reflects on the long-term management of emotions at work using Randall Collins’ concepts of interaction ritual and emotional energy. This study relies on fieldwork performed in emergency medical services in New York and Paris.
Simon J. Williams, Catherine Coveney & Robert Meadows
This article critically explores recent trends and transformations in the monitoring and management of sleep in the digital age, taking as its focus the advent of new digital technologies to trace and track the ‘sleep of ourselves’ far away from the conventional sleep laboratory or clinic. Our argument is situated dually in the history of sleep science and medicine on the one hand, and the rise of new digital forms of so-called self-tracking and mobile health (m-Health) on the other hand. While the recent history of sleep science and medicine may rightly we suggest, in Kroker’s terms, be characterised as a concern with the ‘sleep of others’, a new chapter in this story may well be dawning through the advent of these smart new mobile tools and technologies for mapping, or ‘m-apping’ as we term it, the ‘sleep of ourselves’ in the digital age. The problems and prospects this holds are then critically considered – through the interrelated themes of selfhood, sociality and governance – and some preliminary conclusions ventured in this new digital domain.
Catherine Kohler Riessman
First-person accounts of the illnesses experienced by sociologists have taken hybrid experimental forms. I add my voice to this growing tradition with a story about the discovery and treatment of a soft tissue sarcoma in my thigh, chronicled in a journal I kept over many months. The fragments scribbled in the journal became the basis of an extended illness narrative. I interrogate features of the narrative itself, including the handling of time and imagined audiences – those I was writing for. The illness narrative traces how cancer transformed the many identities I enact on a daily basis and how the invisible labour of particular health workers enabled the restoration of several prized identities. These workers – radiation, occupational and physical therapists – are typically subordinated in the medical hierarchy and the interactional work that they do with patients to restore and reconfigure ruptured identities after serious illness needs attention in medical sociology.
The article explores the telling of co-narrated atrocity stories in accomplishing professional identity. Building on previous work, it is argued that group membership is a prerequisite for such stories to be told. Extracts from empirical data from interviews with social work approved mental health professionals are analysed using an ethnomethodological approach. The findings show how atrocity stories can be co-narrated, not only by longstanding colleagues, but also by two unacquainted persons who share the same professional identity. The article concludes that the ethnomethodological concepts of vulgar competency, unique adequacy, indexicality and the documentary method of interpretation are key to understanding the accomplishment of co-narrated atrocity stories.
Pranee Liamputtong & Dusanee Suwankhong
In this article we draw on Bury’s theory of biographical disruption to discuss the meanings of, and emotional experiences related to, being diagnosed with breast cancer among southern Thai women. Qualitative methods, including in-depth interviewing and drawing methods, were used to collect data from 20 women with breast cancer. The women perceived breast cancer to be a rhok raai; an evil or dread disease. They believed that breast cancer would lead to death. The disruption in their biography occurred when they detected abnormalities indicating breast cancer. The women’s narratives revealed their chaotic lives upon this diagnosis and the news precipitated in them shock, fear, anxiety and loss of hope. Although they experienced chaos and disruption, the women cultivated strategies that helped them cope with their experiences by accepting their fate and adhering to Buddhist beliefs and practices. Through their narratives of biographical disruption, the women in our study offer healthcare providers knowledge that could lead to an appreciation of their needs and concerns. This knowledge is crucial for health professionals who wish to provide emotional support to women who have been diagnosed with breast cancer in Thailand and elsewhere.
Since the emergence of type 2 diabetes as a public health threat around the middle of the 20th century, accounts of disease causation have focused predominately on lifestyle or genetics, or both, while the role of broader structural issues such as psychosocial distress has been downplayed. Yet in the years prior to this emergence, when diabetes remained the preserve of the upper classes, medical experts drew upon multiple narratives when considering the condition, the most popular of which being the role of social organisation and the interplay between mind, body and environment. This article is based on a discourse analysis of the writings of the most prominent diabetes experts between 1800 and 1950 about both the causes and management of the illness. It highlights how, although the connection between lifestyle and diabetes was well established among physicians, individual-level explanations only fully supplanted the emphasis on social organisation as diabetes began to make the transition from being a disease of the rich to one of the poor. It argues that this discursive shift was shaped by the dynamics of class relations rather than any new forms of scientific evidence developed at the time.
What happens to our academic writing when we are invited by our interactants to realize that what is serious for a situated set of practices might not be as serious for another set of practices? In this article I explore such situations by considering the relations among eaters, ecologies and the circulation of different types of food in the context of ontological pluralism in Southern Chile. Inspired by debates on eating and subjectivities coming from empirical philosophy, as well as by theorizations on how to take others’ worlds seriously offered by ‘the ontological turn’ in anthropology, I explore how ethnographic situations related to eating and to foods transform epistemological distances between subjects and objects. More specifically, I show how taking our interactants seriously may lead us to eat our academic wor(l)ds, making room for unexpected ethnographic transactions emerging beyond ethnographic theorization.
In this article, I ask what a Heideggerian analysis of subjectivity can do for disability politics, and to the investigation of subject formation more generally. I begin by outlining the historically dominant ‘social model of disability’, which frames disability as a form of oppression. In the section ‘Michael Oliver and the politics of disablement’, I suggest that a re-reading of Heidegger on subjectivity allows us to chart aspects of disabled personhood missed by the social model. Heidegger argues human existence (Dasein) defies subjectivity; I argue it is more primordial, but that the two can co-exist, particularly when disabled persons shape their own subjectivity. I provide a threefold ontological structure, Dasein-Mitdasein-Subjectivity, sensitive to the politics of subject formation. Finally, I turn to two cases of ontological disability politics, those of the French Muscular Dystrophy Association and global thalidomider politics, to show how my reading of subjectivity is preferable to the social model’s.
Since the 1990s, the concept of ‘recovery in/from serious mental health problems’ has been iterated internationally as the new paradigm in mental health policy and practice. A constitutive element of recovery discourse is a struggle over what defines a ‘good’ life-in-time; yet temporalities of recovery remain under-investigated. This article offers an empirical exploration of recovery enacted in an NHS ‘arts for mental health’ service called Create. I present an analysis of several intersecting temporalities at play within Create through the lens of one service-user’s story. The temporal orderings of the situated aesthetic care practices at Create encapsulate competing articulations of recovery, hope and aspiration. These different temporalities enact different subjectivities, revealing recovery to be a set of socio-political struggles over what lives are deemed liveable in the context of global neo-liberal capitalism.
C Fred Alford
Studies have shown that many children of Holocaust survivors suffer from the experiences of their traumatized parents. Indeed, many of these children call themselves second-generation survivors. Drawing on over 250 interviews with Holocaust survivors from the Fortunoff Video Archive at Yale University, as well as interviews with the children of survivors, this manuscript argues that the transmission of historical trauma from one generation to another is best explained in terms of how trauma disrupts the attachment system. Children want and need to experience their parents’ trauma. However, they need to do so in an age-appropriate way, and in a way that is adequately symbolized. To be excluded from their parents’ subjectivity is as damaging as being overwhelmed by unintegrated parental experience. Attachment theory turns out to be an especially good medium for making sense of this delicate balance.
The aim of this research is to transmit and comment on the authentic voices of socially withdrawn subjects and to contribute toward refining subjective inquiry in contemporary Japan. Here, I detail the cases of four individuals visiting Japanese Non Profit Organizations between August 2011 and August 2012. In accordance with my findings, I define socially withdrawn individuals as post-modern social renouncers. Hikikomori should not be reduced to a mental disorder but should be seen as an idiom of distress and a modality where one can recognize him/herself as a subject, or a mode of enjoyment. I suggest ways of improving qualitative methodology and directions for future research at the intersection of cultural history, anthropology, and subjectivity theory.
James Burton & Daisy Tam
The parasite is widely conceived as a negative figure that takes without giving; perceived as an agent of corruption and destruction, it is subjected to programmes of eradication and expulsion across cultural, economic, political and ethical contexts. This paper offers an alternative approach to the status of parasitic relations in light of Michel Serres’s The Parasite, elaborated through ethnographic research into the after-hours culture and hidden economy of London’s Borough Market. We highlight the mutual dependence of agents in host-parasite networks according to what we term ‘general parasitism’, while inquiring into its ethical potential. Ultimately, we argue that while taking into account the near ubiquity of parasitic relations cannot form the basis for any concrete axiomatic ethical paradigm, it should at least encourage an ethics of hesitation before judgement when faced with any apparent instance of parasitism: to presume that parasitism is undesirable and unethical is itself undesirable and unethical.
Yulia E. Chentsova-Dutton, Eunsoo Choi, Andrew G. Ryder & Jenny Reyes
The meanings of “anhedonia” and “depressed mood,” the cardinal emotional symptoms of major depression, may be shaped by cultural norms regarding pleasure and sadness. Thirty-two European Americans, 26 Hispanic Americans, 33 Asian Americans, and 20 Russian Americans provided reports of (a) depressive symptoms, (b) momentary emotions and pleasure, and (c) global subjective well-being. Momentary reports were collected over 10 days using handheld personal digital assistants. Reports of anhedonia were associated with heightened levels of momentary low arousal negative emotions (e.g., sadness), whereas reports of depressed mood were associated with dampened levels of momentary positive emotions (e.g., happiness). Symptoms of anhedonia and depressed mood interacted in their associations with momentary pleasure. In addition, the associations of anhedonia and depressed mood with positive emotions and life satisfaction differed across cultural groups. Specifically, these symptoms were associated with dampened positive emotions in the Asian American group only. Additionally, anhedonia was associated with dampened global life satisfaction in the European American group only. These results suggest that reports of anhedonia and depressed mood cannot be interpreted at face value as specific and culture-free indicators of emotional deficits. Instead, they appear to signal changes in the balance of positive and negative emotions, with the exact nature of these signals shaped at least in part by cultural context. This conclusion has important consequences for the clinical interpretation of depressive symptoms in multicultural societies.
Mpoe Johannah Keikelame & Leslie Swartz
The experience of epilepsy is profoundly culturally mediated and the meanings attributed to the condition can have a great impact on its social course. This qualitative study used Kleinman’s Explanatory Model framework to explore traditional healers’ perspectives on epilepsy in an urban township in Cape Town, South Africa. The healers who participated in the study were Xhosa-speaking, had experience caring for patients with epilepsy, and had not received any training on epilepsy. Six individual in-depth interviews and one focus group with nine traditional healers were conducted using a semi-structured interview guide. Traditional healers identified several different names referring to epilepsy. They explained epilepsy as a thing inside the body which is recognized by the way it presents itself during an epileptic seizure. According to these healers, epilepsy is difficult to understand because it is not easily detectable. Their biomedical explanations of the cause of epilepsy included, among others, lack of immunizations, child asphyxia, heredity, traumatic birth injuries and dehydration. These healers believed that epilepsy could be caused by amafufunyana (evil spirits) and that biomedical doctors could not treat the supernatural causes of epilepsy. However, the healers believed that western medicines, as well as traditional medicines, could be effective in treating the epileptic seizures. Traditional healers were supportive of collaboration with western-trained practitioners and highlighted that the strategy must have formal agreements in view of protection of intellectual property, accountability and respect of their indigenous knowledge. The findings suggest a need for interventions that promote cultural literacy among mental health practitioners. Research is urgently needed to assess the impact of such collaborations between biomedical services and traditional healers on epilepsy treatment and care.
The following essay is the first ever in the new first-person perspectives column recently initiated by Transcultural Psychiatry. This column is intended to give voice to people of diverse ethnic, cultural, and national backgrounds with current or previous emotional distress or mental illness. This first article is written by Katrina Bartellas, a courageous young Newfoundlander who struggled with an eating disorder early in life, since making a full recovery and now herself working in the mental health field. Katrina writes poignantly about growing up in the fog-soaked intimacy of St. John’s, Newfoundland in an ambitious family of first-generation immigrant medical professionals.
Andrew R. Hatala & James B. Waldram
Theory and research on the healing practices of Indigenous communities around the globe have often been influenced by models of “symbolic healing” that privilege the way patients consciously interpret or derive meaning from a healing encounter. In our work with a group of Q’eqchi’ Maya healers in southern Belize, these aspects of “symbolic healing” are not always present. Such empirical observations force us to reach beyond models of symbolic healing to understand how healing might prove effective. Through the extended analysis of a single case study of rahil ch’ool or “depression,” we propose to advance understanding of forms of healing which are not dependent on a shared “mythic” or “assumptive world” between patient and healer or where therapeutic efficacy does not rely on the patient’s ability to “believe” in or consciously “know” what is occurring during treatment. In this we demonstrate how the body, as a site of experience, transformation, and communication, becomes the therapeutic locus in healing encounters of this kind and argue that embodied mediums of sensorial experience be considered central in attempts to understand healing efficacy.
Manjula O’Connor & Erminia Colucci
In many parts of the world, young adult women have higher levels of common mental disorders than men. The exacerbation of domestic violence (DV) by migration is a salient social determinant of poor mental health. Ecological models describe factors contributing to DV as operating at individual, family, cultural, and societal levels. We explored the interplay among these factors in an Indian community living in Melbourne, Australia, in a qualitative participatory action research study using a modified Forum Theater approach. We here present findings on connections between migration, societal factors, and social/family/cultural factors in DV. The study captured the voices of women living in the community as they describe how DV contributes to their emotional difficulties. Improved understanding of the sociocultural dynamics of DV and the associated social distress in this migrant Indian community can be used to guide the development of culturally sensitive prevention and response programs to assist migrant women from the Indian subcontinent who present with psychopathology and suicidal behaviors associated with DV.
In this Book Forum, our commentators respond to Theresa MacPhail’s provocative ethnography of influenza research and public health response, The Viral Network: A Pathography of the H1N1 Influenza Epidemic. Lyle Fearnley, Katherine A. Mason, Natalie Porter, Adia Benton, and Carlo Caduff reflect on — among other issues — the place and privileging of the laboratory, the simultaneously limiting and lubricating effects of network connections, the problems with foregrounding expertise over power as an explanatory framework, and the way that experts wield speculation and temporality as tools in the global health arsenal. Theresa MacPhail concludes with a response and meditation on her notion of pathography and the continued mutations of a viral anthropology.
Comments on The Viral Network: A Pathography of the H1N1 Influenza Pandemic by Theresa MacPhail (Ithaca, NY: Cornell University Press, 2015)
“Estranged Bodies: Shifting Paradigms and the Biomedical Imaginary” – Special Issue of Body & Society by Anna Zogas
In addition to what’s “In the Journals” so far, and the inaugural issue of Catalyst: Feminism, Theory, Technoscience, September brings us a special issue of Body & Society edited by Margrit Shildrick and Deborah Lynn Steinberg. “Estranged Bodies: Shifting Paradigms and the Biomedical Imaginary” includes articles on human organ transplantation, psychiatry, amputation and war, and a media ecology of cancer, which together explore biomedical governance, estrangement, dissolution, assemblage, and feminist politics. Enjoy!
Estranged Bodies: Shifting Paradigms and the Biomedical Imaginary
Margrit Shildrick and Deborah Lynn Steinberg
This introductory article provides a contextual and theoretical overview to this special issue of Body & Society. The special issue presents five selected case studies – focusing on the contexts of transplantation, psychiatry, amputation and war, and a transvalued media ecology of cancer – to offer meditations on a number of interlinked questions. The first of these is the entanglement of biomedical governance – political/economic as well as self-disciplinary – with the nexus of estrangement, which can denote both the distancing of otherness and self-division. Second is the realm of feeling, of phantasmatic projection and of the ways in which the biopolitical becomes reciprocally, discursively, enmeshed in a wider cultural imaginary. Third is the shifting terrain of gender and feminist politics, a key dimension of which is the necessary reworking of feminist thought in the wake of a radically altered biomedical and biotechnological landscape. Under the rubric of Estranged Bodies, the collection considers themes of dissolution and the fragility of the body/subject read through bodily catastrophe, radical body modification and extreme medical intervention. Also considered is the notion of assemblage – the provisional coming together of disparate parts – which encourages a rethinking of questions of reconstituted, displaced and re-placed bodies.
Staying Alive: Affect, Identity and Anxiety in Organ Transplantation
The field of human organ transplantation, and most particularly that of heart transplantation where the donor is always deceased, is one in which the rhetoric of hope leaves little room for any exploration or understanding of the more negative emotions and affects that recipients may experience. Where a donated heart is commonly referred to as the ‘gift of life’, both in lay discourse and by those engaged in transplantation procedures, how does this imbricate with the alternative clinical term of a ‘graft’? For recipients of donor organs, the experience of living on in the face of otherwise certain death is fraught with complex emotions, not only about the self and the now dead other, but the persistence of the other within the self. In contrast to our expectations of the feel-good narrative of the gift of life, recipients are often significantly troubled by the aftermath of the procedure, which may fundamentally challenge notions of personal identity, as well as having deep implications for our understanding of the relation between death and ‘staying alive’. Drawing on recent research into heart transplantation, I shall theorise the field through a reflection – drawing on both Mauss and Derrida – on the meaning of the gift, before moving on to consider whether a Deleuzian approach to both the assemblage and the ‘event’ of death might offer a more productive framework.
Organ transplantation has been central to debates on medical technologies and their complex biopolitical consequences, new forms of medical governance and new opportunities for capital. Attending to transplantation has also opened up new ways of thinking about, acting on and living ‘in’ the body, raising important questions about what it means to be embodied under particular cultural conditions. The specific ways in which a technology like transplantation puts the body parts of some at the disposal of the bodies of others has served to (re)write bodily boundaries, commoditise body parts and reorganise the social relations of exchange, care and responsibility. The controversies that this family of technologies has given rise to are both readable and read as embedded in and expressive of wider forms of conflict and contestation. Putting these controversies and their entanglements centre-stage, this article focuses on the manner in which transplant technologies construct their publics in gendered and socially stratified terms, as they reconstruct the transplanted organ as a new site for the extraction of surplus value. Drawing on data from fieldwork in Mexico, I will examine the catastrophic consequences of transplant medicine for Mexico’s poor, particularly women who bear the burden of care for the country’s predominantly living transplant programme. In carrying the costs (moral, social and economic) their accounts of these processes offer us an important critical vantage point from which to assess the interplay between state, market and the ‘worn’ body in the context of transplantation.
Illness as Assemblage: The Case of Hystero-epilepsy
This article explores illness as an assemblage of bodies, discourses, and practices by tracing a genealogy of the condition hystero-epilepsy in order to show the precarity of dominant bio-psychiatric ideology in the present. I read Siri Hustvedt’s case study of her own nervous condition with and against other histories of nerves, including Charcot’s treatment of hystero-epilepsy in the 1870s, Foucault’s treatment of hysteria, simulation, and the ‘neurological body’ presented in his lectures in 1974, and Elizabeth Wilson’s recent treatment of the Freudian concept of ‘somatic compliance.’ I assemble this eclectic hystero-epileptic archive not in order to present a definitive history of hystero-epilepsy, but rather to think about how illness is made, unmade, and remade in the clinic and narrative.
Colombia, a country at civil war for over 50 years, has one of the highest rates of landmine injury in the world. This article is based on ethnographic research conducted at the Amputation and Rehabilitation Unit of Bogota’s Central Military Hospital. Through an ethnographic description of surgical amputation and rehabilitation, I examine medical understandings of vitality and masculinity in respect to the senses – primarily that of pain in the act of amputation.
The Bad Patient: Estranged Subjects of the Cancer Culture
Deborah Lynn Steinberg
Cancer has long been a cultural touchstone: a metaphor of devastation and a spectre of social as well as bodily anomie and loss. Yet recent years have witnessed significant transformations in perceptions of cancer, particularly in perceptions of the cancer patient. This paper is concerned with the ‘struggles of subjectivity’ emergent in this transvalued cancer culture. Explored from the standpoint of the ‘bad patient’, and drawing on media and cultural methodologies, the paper will consider the convergence of medicine, morality and popular iconography as they are embedded in the imageries, imaginaries and representational economies of the cancer culture industry. Of particular concern in this context are the (re)composures of the patient, as liminal figure, caught between clinical imperative and cultural fantasy.
Here is the first round of “In the Journals” for September. Happy autumn reading!
The rise of debt as a mechanism of development troubles many scholars and aid practitioners. Contrary to these concerns, however, ethnographic research at a Japanese NGO in Myanmar showed that Japanese and Burmese aid workers found value in moral and monetary debt relations. In this article, I argue that these aid workers viewed indebtedness as a precondition for the making of voluntary actors, willing and committed to aid work. What they problematized was not indebtedness but, rather, competing understandings of the appropriate temporality of a debt’s repayment. The fault lines did not appear along cultural or moral-monetary boundaries; they existed in the ways that people conceptualized voluntary actors as emerging from either long-term forms of indebted gratitude or sequences of short-term contractual agreements. While the entrapment of the poor in cycles of debt remains an increasing concern in the world, I here ask how we might understand local aid workers’ professional commitments when they do not question indebtedness as a moral framework.
Linking socioeconomic and personal transformations, recent scholarship on neoliberalism in East and Southeast Asia has examined the role of various emotional experiences in reconfiguring selfhood toward values of personal responsibility and self-care. However, studies rarely focus on how such experiences come to be understood as specifically emotional themselves. In this article, I examine the growing use of emotion (cảm xúc) as a conceptual category to define the self and everyday life in a psychologistic idiom among middle-class residents of Ho Chi Minh City, Vietnam. While more established discourses of sentiment (tình cảm) define selfhood in relation to notions of obligation and care, the emerging model of emotion emphasizes individuated self-knowledge. However, instead of replacing sentiment, newer understandings of emotion have developed alongside and in relation to sentiment. In categorizing various feelings as explicitly “emotional” in nature, people participate in a self-fashioning project that cultivates an emotionally aware and expressive self that is informed by neoliberal sensibilities yet does not supplant socialist or Confucian models of selfhood. I argue that emotions are not only central to the subjective experience of the transition to a market-oriented economy but also that emotion as a category itself is a medium through which economic transformations reorganize selfhood more generally.
Pheromones, feminism and the many lives of menstrual synchrony
Michael Pettit and Jana Vigor
Since first proposed in 1971, the theory of menstrual synchrony has been haunted by doubt while gaining greater public visibility. Based on a study of women living in a dormitory, biopsychologist Martha McClintock found that there was a greater synchronization in the date for the onset of menstruation among close friends and roommates. An analysis of newspapers, magazines and textbooks alongside the scientific literature suggests that the tenacity of menstrual synchrony is because of its circulation within many heterogeneous communities where the ambiguous phenomenon acquired multiple meanings. It was simultaneously heralded as offering the first evidence of human pheromones and demonstrating how behavior regulates biological processes. This history offers an untapped lens to explore the fraught relationship between sociobiology and feminism. This relationship has primarily been understood in terms of opposition, but menstrual synchrony’s reception reveals a more complicated and intertwined story about the simultaneous growth of evolutionary and feminist psychology. The history of menstrual synchrony illustrates late twentieth-century debates over ‘the social,’ when it could entail both the influence of affect-laden friendships and the biochemicals secreted from the body.
In recent decades a model of healthy citizenship has emerged, which construes citizens as autonomous, responsible and active participants in the management of their health. While proponents view this as an empowering discourse, critics claim that it creates new forms of discipline and social control. This article argues that there is a need for a shift in the conceptual framework surrounding this discussion – beyond autonomy versus discipline understood as heteronomy – because it obscures the many ways in which individuals engage with healthy citizenship discourse that are not governed by principles of autonomous choice and that do not corroborate fears of normalization and discipline. Michel de Certeau’s theory of the creative tactics of everyday life is offered as a useful alternative framework, insofar as it is concerned less with individual autonomy than with the rendering ‘habitable’ of a given space. Drawing on existing empirical research on people’s engagements with genetic risk information, four tactics are identified that escape both healthy citizenship discourse and its critique: translation; selective mobilization; non-disclosure; and a refusal to engage. Thinking in terms of tactics and habitability, it is argued, provides a vocabulary with which to articulate other modes of reasoning, action and moral conduct that are at work.
The decision: Relations to oneself, authority and vulnerability in the field of selective abortion (open access)
Sølvi Marie Risøy, Thorvald Sirnes
This article is about selective abortion. It concentrates on the existential, moral and social conditions that arise when pregnant women, using prenatal diagnosis (PND), are told that there is something seriously wrong with the foetuses that they are carrying. This is characterised as a micro state of emergency, where both normal cognitive categories and normative orders are dissolved. The analyses are anchored in the womens’ own presentations and understandings of the processes and dilemmas related to the abortion decisions, and our most important empirical materials are interviews with women who have experienced them. Our main ambition is to show the relation between some important dimensions of the situation in which the abortion decision has to be made, and the special kind of authority on behalf of the women that presents itself. Of equal importance is the vulnerability of the pregnant women, resulting in a co-production of the women as both Sovereigns and Homo Sacer in the decision situation. We also analyse some of the experienced relations between the women and the foetuses, and how the women constitute themselves as moral subjects, with a particular emphasis on the motifs of sacrifice and self-sacrifice. It is a central argument in the article that we have to understand the specificity of the decision situation, without reducing it either to other phases (before or after) of the total processes of PND and selective abortion, or to general discourses of disability or normality. The specificity of the situation in which the abortion decision is made is a pivotal point in society’s regulation (in a broad sense) of the field and in the constitution of the regime of selective abortion.
This article discusses birth defect intervention and genetic services as measures of intervention in China. Based on the practical application of a three-level intervention model, it analyses the important roles played by genetic services in the areas of premarital, pregestational and prenatal genetic screening, genetic counselling, and testing in the prevention of birth defects in China. It demonstrates that since there is imbalanced development in different areas of China, genetic services are underutilised. In practice, the intervention model has problems and is facing difficulties and challenges. And, given the national desire to reduce birth defects, nondirectiveness is not getting the attention deserved in genetic counselling. An insufficiency of psychological support and humanistic care in genetic services, and lack of social and financial support for the children with birth defects and their families still exists widely in China.
The resilient child, human development and the “postdemocracy”
Jennifer Henderson, Keith Denny
Resilience is the popular term for a capacity to ‘bounce back’ from adversity. It is also a scientific concept informing an influential bio-psychological approach to contemporary inequality. This article recalls the origins of the term in developmental psychopathology and suggests that the project of cultivating resilient selves is an aspect of the broader depoliticization characterizing “post-democracies” today. The scientific object of resilience is produced through the study of the interplay of risky and protective variables in the individual life course. Resilience is present when developmental resources in and around the self help to combat threats to ‘adaptation’. The project of resilience is to know how to cultivate individual robustness in the face of immutable threats – including poverty, grasped as a developmental risk factor. In this way of knowing the world, structured inequality is seen to be relatively unchangeable compared to the powers of resilience. Resilience has been taken up by neoliberal governments as the model of evidence-based ‘actionable knowledge’ for population interventions. But its influence extends further, to institutions of global governance, where resilience’s central object of enquiry and intervention – the child – has been projected onto humanity as a whole. The appeal of resilience as a practical and optimistic science is undeniable but we suggest that it is time to take account of its implications for political contestation. Resilience provides positive psychology’s contribution to the narrowing of justice- and equity-seeking projects in the current moment, reducing their horizons to the care for ‘human capital’ under conditions of socioeconomic precarity.
Culture, Medicine and Psychiatry
Ritual healing has been one of the core topics in anthropology and, to a lesser extent, in psychology as well. Much of the research on ritual healing has focused on how healing works, and what factors constitute the efficacy of healing. In answering this question, scholars have focused primarily on two main factors—the symbolic significance of rituals, and the relationship between the healer and the patient. This paper explores understandings about efficacy in a context where elaborate rituals do not occur, the role of the healer is minimal, and the sufferers do not have expectations of complete wellness. In the Mahanubhav temples in India, healing is not understood as the removal of symptoms. The healing process involves amplifying unpleasant and painful symptoms, thereby ‘drawing out’ the illness from the body. Moreover, the temple narratives emphasize the transient nature of temple healing, where people rarely become completely well. They therefore frequently return to stay in the temple as and when their symptoms recur, thus forging long-term bond with the temple community and sect. These findings suggest that temple healing is powerful not so much for the practice of specific exorcist rituals, but for providing a refuge and a community for suffering individuals.
Ulysses contracts are a particular type of advance directive that has been advocated for use in mental health settings and addictions treatment. Taking their name from the legend of Ulysses, such contracts are distinctive insofar as they are designed to thwart certain anticipated future wishes rather than realize them. In this paper, I consider what Ulysses contracts reveal about contemporary conceptions of addiction and the self. Drawing on discussions of Ulysses contracts in the psychiatric and addictions literature, as well as historical and contemporary examples of such, I show that Ulysses contracts are premised on a split between the present ‘rational’ self and the future ‘irrational’ self, thereby reproducing a very particular notion of addiction—one that serves to naturalize certain ways of thinking about freedom, choice, coercion, and the self.
I explore the historical and cultural shifts that underlie the normalization of the term dépréshen and the emergence of public psychiatric discourses in 1990s Iran. I do this by investigating the cultural sensibilities of a particular generation, the self-identified 1980s generation, and the ways they situate what is perceived as dépréshen in social anomie and the memories of the Iran–Iraq war. I argue that psychiatrization of psychological distress in Iran was not simply a de-politicizing hegemonic biomedical discourse, but that the contemporary Iranian discourses of psychological pathology and social loss evolved in public, hand-in-hand, through the medicalization of post-war loss. Psychiatric subjectivity describes conditions where individuals internalize psychiatry as a mode of thinking, and performatively articulate not only their desires, hopes, and anxieties, but also historical losses as embodied in individual and collective brains. I underscore my interlocutors’ simultaneous historicization and medicalization of their dépréshen, arguing that psychiatrically medicalized individuals are performative actors in the discursive formation of both biomedical and social truth. Dépréshen, in the larger sense of the word, has become one way to navigate ruptured pasts, slippery presents, and uncertain futures.
Through the use of concepts such as traumatization and posttraumatic stress disorder (PTSD), the distressing experiences of survivors are understood in psychology and psychiatry primarily as the behavioural symptoms resulting supposedly from an incomplete emotional and cognitive processing of traumatic events. Due to such an exclusive focus on the intra-psychic processes, besides the survivors’ healing facilitated by cultural beliefs and symbols, their trauma-related distress associated with the cultural interpretation of loss is also generally ignored. This paper illustrates the utility of the social constructionist paradigm in understanding the survivors’ experiences of suffering and healing within the cultural and socio-political context of violence through an ethnographic study among the poor farmers of Nandigram, India, inflicted by violence from the state government as it tried to forcibly acquire their land to build a chemical factory. How the traumatized selves experience intense distress resulting from disruptions to a sense of wholeness and how this wholeness may be reformulated through culturally valued beliefs are highlighted in the themes of suffering (‘experience of PTSD symptoms’, ‘betrayed self’, ‘overwhelmed by loss’, and ‘biographical disruption’) and healing (‘moral re-affirmation’, ‘sense of togetherness’, ‘sense of security due to change in political environment’) presented in the vignettes.
Narrative Structures of Maya Mental Disorders
Andrew R. Hatala, James B. Waldram, Tomas Caal
Several Indigenous communities around the globe maintain unique conceptions of mental illness and disorder. The Q’eqchi’ Maya of southern Belize represent one Indigenous community that has maintained, due to highly “traditional” ways of life and the strong presence of many active localized healers or bush doctors, distinct conceptions of mental disorders as compared to Western psychiatric nosology. The purpose of this ethnographic study was to understand and interpret Q’eqchi’ nosological systems of mental disorders involving the factors—spiritual, cultural, social, historical, cosmological, or otherwise—implicated in their articulation and construction. Over a period of 9 months, and with the help of cultural advisors from several Q’eqchi’ communities, 94 interviews with five different traditional Q’eqchi’ healers were conducted. This paper demonstrates that the mental illnesses recognized by the Q’eqchi’ healers involved narrative structures with recognizable variations unfolding over time. What we present in this paper are 17 recognizable illnesses of the mind grouped within one of four broad “narrative genres.” Each genre involves a discernible plot structure, casts of characters, themes, motifs, and a recognizable teleology or “directedness.” In narrative terms, the healer’s diagnostic and therapeutic work can be understood as an ability to discern plot, to understand and interpret a specific case within the board, empirically based structure of Q’eqchi’ medical epistemology.
Open Mind, Open Heart: An Anthropological Study of the Therapeutics of Meditation Practice in the US
Neely Myers, Sara Lewis, Mary Ann Dutton
Based on ethnographic fieldwork and interviews collected with meditation teachers and students in the United States, this article will argue that active training in meditation-based practices occasions the opportunity for people with traumatic stress to develop a stronger mind–body connection through heightened somatic awareness and a focus on the present moment that they find to be therapeutic. Three important themes related to healing through meditation for trauma emerged from the data and centered around the ways our interlocutors attempted to realign their sense of self, mind and body, after a traumatic experience. The themes helped explain why US women perceive meditation as therapeutic for trauma, namely that the practice of meditation enables one to focus on the lived present rather than traumatic memories, to accept pain and “open” one’s heart, and to make use of silence instead of speech as a healing modality. As meditation practices increasingly enter global popular culture, promoted for postulated health benefits, the driving question of this research—how meditation may perpetuate human resilience for women who have experienced trauma based on their own perspectives of meditation practices—is a critical addition to the literature.
Based on 11 months of ethnographic fieldwork at a residential treatment center in the United States, this article explores the varied meanings that female youth attribute to behavior and the strategic (mis)use of knowledge about psychiatric diagnosis and medication at a time when the scope of behaviors pathologized in young people continues to expand. Drawing upon psychological and critically applied medical anthropology, as well as contributions from philosophy on how classifications of people come into being and circulate, attention is paid to the multiple contradictions at work in diagnosing young people with mental disorders. A detailed examination of an exchange that occurred during one particular group therapy session is presented to demonstrate how psychiatric selves emerge in this environment when conventional labeling practices no longer suffice as an explanation of behavior. This turn to psychiatry reveals both the salience of and confusion around mental health treatment and diagnosis among adolescents, opens up the distinctions young people make between “real selves” and “medicated selves,” and invokes the possibility of psychiatric disorder as a means to both forgive and discredit.
Music as Illness; Music as Healing
Throughout the Soviet Union, the arts became tied to ethnicity through the project of Socialist Realism. When, in 1991, the Kyrgyz Republic became independent from the Soviet Union, its national narrative continued to be built upon tropes of Kyrgyz ethnicity. Through their engagement with images of the ethno-national self, the arts provide a great source of beauty. Defining beauty as a representation of the self that is pure whole, and stable, Julia Kristeva asserts that beauty and suffering are part of the same phenomena. Arthur Kleinman argues that suffering is best understood as existing within the triangulated relationship of cultural representation, collective experience, and subjectivity. Music too is part of this triangulated relationship, and therefore, a part of suffering. Drawing upon ten months of ethnographic fieldwork in Kyrgyzstan, this article explores the illness experience of a single Kyrgyz musician. In doing so, it illustrates music’s role in self-formation and the development of social, economic, and political ties and the shifts that occur in these during illness. In drawing forth the role of music in the construction of racialized ethnicities, this article demonstrates how the experience of transformative beauty can coexist with turmoil, marginalization, and violence.
Suicide in Three East African Pastoralist Communities and the Role of Researcher Outsiders for Positive Transformation: A Case Study
Bilinda Straight, Ivy Pike, Charles Hilton, Matthias Oesterle
We examine cultural understandings and practices surrounding suicide in Pokot, Samburu, and Turkana pastoralists in north-central Kenya—three geographically overlapping and mutually interacting pastoralist communities. We collected our data in the context of a study of poverty, violence, and distress. In all three communities, stigma associated with suicide circumscribed individual responses to the World Health Organization’s Self-Report Questionnaire, which led to an ethnographic sub-study of suicide building upon our long-standing research in East Africa on distress, violence, and death. As is true for most of sub-Saharan Africa, reliable statistical data are non-existent for these communities. Thus, we deliberately avoid making assertions about generalizable statistical trends. Rather, we take the position that ethnographically nuanced studies like the one we offer here provide a necessary basis for the respectful collection of accurate quantitative data on this important and troubling practice. Moreover, our central point in this paper is that positive transformational work relating to suicide is most likely when researcher outsiders practice ‘deep engagement’ while respectfully restricting their role to (1) iterative, community-driven approaches that contextualize suicide; and (2) sharing contextualized analyses with other practitioners. We contend that situating suicide within a broader cultural framework that includes attitudes and practices surrounding other forms of death is essential to both aspects of anthropological-outsiders’ role.
Disability Studies Quarterly (open access)
Beyond A Beautiful Mind: Schizophrenia and Bioethics in the Classroom (open access)
Elizabeth J. Donaldson
This essay focuses on specific teaching assignments, strategies, and resources designed to help undergraduate students think critically about key concepts in bioethics—such as autonomy, paternalism, informed consent, and competency—using examples and case studies involving people diagnosed with schizophrenia. The assignments described below are disability-rights inspired interventions into the students’ career-focused mindsets and training; one of my main strategies is social decentering, or having students examine a situation from a variety of theoretical and subjective perspectives. Exposing students to online talks by people diagnosed with schizophrenia and similar primary sources helps those students without first-hand experience to better understand these different points of view. While these assignments are primarily geared toward bioethics classes, they include resources and ideas for class activities that might be useful in other courses within disability studies, mad studies, psychiatry, literature, or film.
Teaching with Trauma: Disability Pedagogy, Feminism, and the Trigger Warnings Debate (open access)
Angela M. Carter
Recently, a heated debate has risen in Academia following numerous student initiatives petitions for the formal incorporation of rigger warnings in course syllabi. When contextualized within the intersecting politics of disability and feminist pedagogies, a number of fundamental contentions within this debate become apparent. First, grave misunderstandings remain regarding about practices of accommodation and the possibility of establishing the classroom as a “safe space.” Second, resistance within the academy to understand trauma as a pedagogical issue illustrate a failure to consider experiences of and responses to trauma as issues of disability (in)justice. Through an exploration of these issues, it becomes evident that the conflicting approaches to trauma in the classroom demand the more integrated, collaborative praxis of a “Feminist Disability Studies Pedagogy” (FDSP). When approached through this hybrid pedagogy, the conversation shifts from whether we should use trigger warnings, to why trauma itself is an imperative social justice issue within our classrooms.
East Asian Science, Technology, & Society
In this article, the authors review collaborations in the emerging biomedical sciences in South Korea. At the global level, several studies have made substantial contributions to the understanding of the underlying structure of collaboration networks across countries. Despite the increase in international collaborations, researchers have rarely paid attention to the structural pattern of internal collaboration among individual actors that reflects culturally embedded characteristics in East Asia. To fill this gap, this study explores research collaboration in South Korea. In this study, the “collaborative culture” is interpreted and assessed through collaborative patterns in the network of important scientific actors and their conduct subject to reproduction. By applying a social network analysis approach, the authors visualize such attributes of network relations and discuss how to deal with ethical issues that are vital to sustainable scientific collaboration.
This article synthesizes anthropological research on morality and performance, drawing from ethnographic fieldwork with a Zulu choir that was an HIV support group and AIDS activist organization. The article responds to an increasing level of anthropological interest in the topic of morality and contributes to an emerging body of literature on language and experience. The concept of moral assemblages is used to examine the embodied communicative dispositions of choir members amid two overlapping and sometimes conflicting public discourses about HIV disclosure. Building on previous research on how performance makes it possible to address topics otherwise outside cultural boundaries of acceptable speech, the article explores how framing HIV disclosure as performance allowed some South Africans living with HIV to embody the conflicting prescriptions of two distinct public discourses about disclosure.
Anthropological accounts of healing tend to draw, either explicitly or implicitly, on the notion of “symbolic” healing initially developed in Lévi-Strauss’s seminal article, “The Effectiveness of Symbols.” Within this framework, therapeutic efficacy is understood as the result of a transformation of meaning or the manipulation of symbols. This article seeks to challenge and refine this approach by suggesting that the transformative potential of the healing ritual may be located prior to the establishment of symbolic meaning and manipulation in the course of the healing ritual. Through an experientially specific analysis of soul retrieval, a neo-shamanic healing ritual practiced by contemporary Euro-Americans in the United States, I demonstrate that the healing process begins with, and hinges on, a successful encounter with alterity or otherness, which is established in the course of the ritual but extends beyond it. Serving as a counterweight to accounts of ritual healing that emphasize processes of meaning making as anchored in the creation of coherence, the article argues that a fuller understanding of therapeutic or healing processes must also include an appreciation for the transformative effects that discontinuities or disruptions to one’s implicitly coherent sense of self can have.
A ‘new normal’: Exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs
Claire Balmer, Frances Griffiths, Janet Dunn
Cancer survival is increasing, and many people are living years after cancer treatment. For example, it is predicted that 46 per cent of men and 56 per cent of women diagnosed in 2007 in England and Wales will survive their cancer for 5 years or more. However, ‘survivors’ may be living with significant physical, psychological and social disruption caused by their illness. Furthermore, huge disparities exist in the outcomes for different cancer ‘types’, and there has been little investigation of those living with ‘poor prognostic’ cancers. Our aim was to explore the experience of living after the diagnosis of a poor prognostic cancer. Data were gathered from 30 people via interviews and participants’ own photographs. Our findings suggest that a full ‘recovery’ may be impossible after a cancer diagnosis. Such diagnoses will continue to threaten biographical trajectory and self-identity forever. ‘Returning to normal’ was considered highly important for participants, but a changed normality had to be accepted in which lives were managed carefully and a constant fear of recurrence created liminality and made ‘survivorship’ ambiguous. Experience was often complicated by the social response associated with cancer that hindered communication and increased isolation. Participant-produced photographs, used here for the first time specifically by a sample of people with poor prognosis cancer, proved to be an acceptable data collection method and have added a poignancy and ‘completeness’ to the data that have arguably led to a more comprehensive understanding.
Resolute efforts to cure hepatitis C: Understanding patients’ reasons for completing antiviral treatment
Jack A Clark, Allen L Gifford
Antiviral treatment for hepatitis C is usually difficult, demanding, and debilitating and has long offered modest prospects of successful cure. Most people who may need treatment have faced stigma of an illness associated with drug and alcohol misuse and thus may be deemed poor candidates for treatment, while completing a course of treatment typically calls for resolve and responsibility. Patients’ efforts and their reasons for completing treatment have received scant attention in hepatitis C clinical policy discourse that instead focuses on problems of adherence and patients’ expected failures. Thus, we conducted qualitative interviews with patients who had recently undertaken treatment to explore their reasons for completing antiviral treatment. Analysis of their narrative accounts identified four principal reasons: cure the infection, avoid a bad end, demonstrate the virtue of perseverance through a personal trial, and achieve personal rehabilitation. Their reasons reflect moral rationales that mark the social discredit ascribed to the infection and may represent efforts to restore creditable social membership. Their reasons may also reflect the selection processes that render some of the infected as good candidates for treatment, while excluding others. Explication of the moral context of treatment may identify opportunities to support patients’ efforts in completing treatment, as well as illuminate the choices people with hepatitis C make about engaging in care.
Tainted blood: Probing safety practices in the Danish blood system
Ida Deleuran, Zainab Afshan Sheikh, Klaus Hoeyer
The existing literature on donor screening in transfusion medicine tends to distinguish between social concerns about discrimination and medical concerns about safety. In this article, we argue that the bifurcation into social and medical concerns is problematic. We build our case on a qualitative study of the historical rise and current workings of safety practices in the Danish blood system. Here, we identify a strong focus on contamination in order to avoid ‘tainted blood’, at the expense of working with risks that could be avoided through enhanced blood monitoring practices. Of further significance to this focus are the social dynamics found at the heart of safety practices aimed at avoiding contamination. We argue that such dynamics need more attention, in order to achieve good health outcomes in transfusion medicine. Thus, we conclude that, to ensure continuously safe blood systems, we need to move beyond the bifurcation of the social and medical aspects of blood supply as two separate issues and approach social dynamics as key medical safety questions.
The concept of addiction as a disease is becoming firmly established in medical knowledge and practice at the same time as the logics of the harm reduction approach are gaining broader acceptance. How health care practitioners understand and intervene upon drug use among their patients is complicated by these two models. While harm reduction can be understood as a form of governmentality wherein drug-taking individuals express their regulated autonomy through self-governance, the notion of addiction as a disease removes the option of self-governance through negating the will of the individual. Through analysis of qualitative interviews conducted with 13 health care practitioners who provide care for economically marginalized people who use drugs in New York City, it was found that the absence of will articulated in constructions of addiction as disease offered a gateway through which health care practitioners could bring in ideological commitments associated with harm reduction, such as the de-stigmatization of drug use. Despite differences in the attribution of agency, sewing together these two approaches allowed health care practitioners to work with drug-using patients in practical and compassionate ways. This resembles the strategic deployment of diverse subjectivities found in feminist, post-structural liberatory projects wherein differential subjectification proves tactical and productive. Although drug-using patients may enjoy the benefits of practical and compassionate health care, the conjoint facilitation and denouncement of their will occasioned by the use of both harm reduction and the disease model of addiction imply their management by both pastoral and disciplinary technologies of power.
Global mental health research is increasingly highlighting the high levels of untreated mental illness in Africa and calling for the scaling-up of services in order to redress this situation. A particular model of care is being strongly advocated for such scale-up, and a recent explosion of research is providing guidelines for its implementation. This article seeks to open up the ‘black box’ of international research on scaling up the provision of mental health care in Africa, unearthing the hidden assumptions and power dynamics underpinning the knowledge produced. It insists that gaining a better understanding of care provision demands that we not only fill the gaps in knowledge but also problematize the assumptions upon which existing knowledge is based. This article demonstrates how two interrelated paradigms are strongly mediating research in this area – those of ‘scientific evidence’ and ‘human rights’. Drawing on recent research within the sociology of scientific knowledge, and strands of postcolonial thought, it demonstrates how these paradigms are both underpinned by several contentious epistemological assumptions, assumptions which are deeply inserted within the epistemological order of Western modernity. The main argument is that through their shared ideological undertones of ‘objectivity’, ‘universalism’ and ‘rationalism’, these paradigms are potentially marginalizing other possibly important ways of thinking about care in Africa, ways which might not originate from modernist forms of consciousness. This article makes a plea for a more inclusive and plural archive of knowledge on scaling up mental health care in Africa, one which is more hospitable to diverse epistemological politics and moral landscapes.
Adolescents’ sense-making of alcohol-related risks: The role of drinking situations and social settings
Anu Katainen, Anna-Sofia Lehto, Antti Maunu
The article explores how young people understand the risks of alcohol use and how these understandings are associated with differing drinking situations and social settings. By taking account of situational factors, the aim is to demonstrate how young people have highly nuanced notions of drinking styles that suit different drinking situations and of associated risks. The data for the research were gathered in 18 group interviews with Finnish ninth graders aged 14–15 years. Short film clips portraying young people in different drinking situations were used as stimulus material for the interviews. Data analysis focussed on the risk factors related to the social situations illustrated in the film clips. The results show that young people’s risk assessments are not based on alcohol itself, but the magnitude of risk is estimated in relation to the social setting of the drinking situation. What is relevant for young people is whether the social situation allows them to make choices with which they feel comfortable. At the opposite pole of problem drinking was social drinking for the purpose of having fun together with other people in such a way that one remains in control of the drinking situation. From a prevention point of view, a key implication is that awareness of the risks is closely associated with situational and social factors. However, the awareness of those risks does not necessarily prevent young people from drinking because they may be accepted as part of the drinking experience.
Health and Place
Making unhealthy places: The built environment and non-communicable diseases in Khayelitsha, Cape Town
Warren Smit, Ariane de Lannoy, Robert V.H. Dover, Estelle V. Lambert, Naomi Levitt, Vanessa Watson
In this paper, we examine how economic, social and political forces impact on NCDs in Khayelitsha (a predominantly low income area in Cape Town, South Africa) through their shaping of the built environment. The paper draws on literature reviews and ethnographic fieldwork undertaken in Khayelitsha. The three main pathways through which the built environment of the area impacts on NCDs are through a complex food environment in which it is difficult to achieve food security, an environment that is not conducive to safe physical activity, and high levels of depression and stress (linked to, amongst other factors, poverty, crime and fear of crime). All of these factors are at least partially linked to the isolated, segregated and monofunctional nature of Khayelitsha. The paper highlights that in order to effectively address urban health challenges, we need to understand how economic, social and political forces impact on NCDs through the way they shape built environments.
Divided and disconnected — An examination of youths’ experiences with emotional distress within the context of their everyday lives
Emily K. Jenkins, Joy L. Johnson, Vicky Bungay, Anita Kothari, Elizabeth M. Saewyc
This paper is based on a qualitative study conducted in a rural community in British Columbia, Canada. Ethnographic methods were used to: (1) to bring youth voice to the literature on emotional distress; and (2) to capture the ways in which context shapes young peoples’ experiences of emotional distress within their everyday lives. Our findings demonstrate how socio-structural contextual factors such as the local economy, geographical segregation, racism, ageism, and cutbacks in health and social service programming operate to create various forms of disconnection, and intersect in young peoples’ lives to shape their experiences of emotional distress.
Ethics of care in medical tourism: Informal caregivers’ narratives of responsibility, vulnerability and mutuality
Rebecca Whitmore, Valorie A. Crooks, Jeremy Snyder
This study examines the experiences of informal caregivers in medical tourism through an ethics of care lens. We conducted semi-structured interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery, asking questions that dealt with their experiences prior to, during and after travel. Thematic analysis revealed three themes central to an ethics of care: responsibility, vulnerability and mutuality. Ethics of care theorists have highlighted how care has been historically devalued. We posit that medical tourism reproduces dominant narratives about care in a novel care landscape. Informal care goes unaccounted for by the industry, as it occurs in largely private spaces at a geographic distance from the home countries of medical tourists.
International Journal of Social Psychiatry
Transatlantic variation in the attributed etiology of psychosis
G Eric Jarvis, Venkat Bhat, Tomas Jurcik, Vincenzo Spigonardo, Rob Whitley
Background: Differences in transatlantic perception of psychosis have been reported in the historical psychiatric literature.
Aims: This study aims to determine if articles in the American Journal of Psychiatry (AJP) are more likely to attribute biological factors to the etiology of psychosis than those of the British Journal of Psychiatry (BJP).
Methods: A systematic MEDLINE search for articles in the AJP and BJP from 2005 to 2007 identified 360 abstracts with psychosis and etiology-related words. Chi-square analyses were used to test differences in the proportion of attributed biological or psychosocial etiology of psychosis in each journal.
Results: A greater proportion of abstracts (83/87) in the AJP attributed biological etiology of psychosis (χ2 = 12.33, df = 1, p < 0.001), while a greater proportion in the BJP (16/44 abstracts) attributed psychosocial etiology (χ2 = 19.76, df = 1, p < 0.001).
Conclusions: The AJP tends to publish biomedical explanations of psychosis, while the BJP shows a relative preference for psychosocial theories.
Role of traditional healers in the pathway to care of patients with bipolar disorder in Egypt
Tarek Assad, Tarek Okasha, Hisham Ramy, Tamer Goueli, et al.
Background: A large number of mentally ill patients prefer to visit non-medical practitioners such as traditional healers because of the confidence in the system, affordability and accessibility of the service. This may lead to delay in seeking psychiatric services and has prognostic impact.
Aim: To assess the rate of bipolar affective disorder (BAD) patients seeking traditional healers, the sociodemographic and clinical correlates of those patients.
Methods: We assessed 350 patients with BAD after confirmation of diagnosis with Structured Clinical Interview for DSM-IV Axis I Disorder (SCID-I) research version and assessment of functioning with Global Assessment of Functioning scale. They were assessed for percent, rate and timing of seeking traditional healers.
Results: In all, 40.8% sought traditional healers, with 34.9% more than four times. Of those, 62.2% were before seeking psychiatric services and 37.8% after. Lower educational level, less impairment of functioning and presence of hallucinations were significant correlates.
Conclusion: This study shows that most of the patients suffering from mental illness prefer to approach faith healers first, which may delay entry to psychiatric care and thereby negatively impact the prognosis of BAD. This highlights the importance of mental health education and developing a positive collaborative relationship with traditional healers.
It was only a year ago that the Ebola epidemic in West Africa was highly visible. Images of health workers dressed in hot and heavy hazmat gear, body bags being tossed into shallow graves, and press conferences with top international health officials routinely peppered the nightly news cycle.
Perhaps you, like me, promptly added a week on the Ebola crisis to your introductory course on global health, the politics of humanitarianism, African history, media studies, race and social justice, or science and technology studies. Or maybe you featured the epidemic prominently in your course on postcolonial futures or war and its afterlives. Or maybe you put together an entire syllabus on the Ebola crisis of 2014 and 2015.
In spring 2015, teaching about the Ebola epidemic in West Africa as part of a general unit on postcolonial science, medicine, and technology, I found myself cobbling together a lot of different media sources in a quest to close the distance between our comfortable classroom in California and the streets of Monrovia or Freetown. I opted to stitch together the CBS news magazine 60 Minutes piece on treatment camps in Liberia, which focused almost exclusively on the plight of white emergency physicians, some short documentary footage from Sierra Leone via Okayafrica, and Donka: X-Ray of an African Hospital, a deeply affecting documentary on a day in the life of Guinea’s major public hospital in Conakry in the wake of structural adjustment.
In 2015, as many of us prepare our syllabuses and return to the classroom, I highly recommend putting In the Shadow of Ebola at the top of your list for teaching about a crisis that is still quietly unfolding in West Africa, despite the forgetfulness of Western media. All of the issues that I would incorporate into a unit unpacking the Ebola epidemic are in this film — histories and legacies of civil war, the politics of infrastructure, the centrality of family, mutual aid, militarization, complications of humanitarian aid. The focus on the story of a family caught between two worlds makes it all the more powerful.
In the short essays that follow, Johanna Crane, Julie Livingston, Michelle Murphy, and Peter Redfield all offer their highly perceptive reflections on the film. Crane and Livingston both provide accounts of how they used In the Shadow of Ebola as a teaching tool in the classroom. Murphy situates the film within longer histories of infrastructural atrophy and American colonialism. And Redfield meditates on the film’s visual and narrative portrayal of the epidemic itself. Filmmakers Gregg Mitman and Sarita Siegel engage with the essays and offer some broader reflections on how they came to make this film.
In the Shadow of Ebola is an intimate story of a family and a nation struggling against the Ebola outbreak in Liberia. We follow a Liberian student and his family living divided between the United States and Liberia. As the crisis unfolds, loved ones are isolated in Monrovia where the government is shut down, schools and markets are closed, and food prices are rising.
Liberians find themselves fighting an invisible war that is painfully reminiscent of the chaos and confusion of the fourteen-year Liberian civil war, which ended a mere decade ago. When the Liberian government responds to the crisis initially with military-enforced quarantines and curfews, mistrust and anger among Monrovia’s residents grow.
As the death toll from Ebola climbs, and a quarantine results in the shooting and death of a 15-year-old boy, mistrust and disbelief are replaced by compassion and inner resolve to combat the spread of the virus. With international aid slow to arrive, Liberians turn to each other for help, as healthcare workers, musicians, and artists join forces on the front lines in public health education campaigns. The steps toward community empowerment and action help to build trust and stabilize the number of new Ebola cases. But the ripple effects — food insecurity, overwhelmed medical infrastructure, and economic isolation — endure.
A slightly truncated version of In the Shadow of Ebola can be viewed for free online via PBS/Independent Lens. The full version of the film is available through Films Media Group for rental or purchase.
Comments on In the Shadow of Ebola, directed by Gregg Mitman and Sarita Siegel, produced by Alchemy Films and Gregg Mitman, 2015.
Normalizing Sexually Violated Bodies: Sexual Assault Adjudication, Medical Evidence, and the Legal Case by Sameena Mulla
What constitutes evidence of sexual assault?
I am seated in a courtroom as a sexual assault forensic nurse is asked to explain, by a prosecutor, the basic tenets of genital anatomy. During the sexual assault trials I observed in Milwaukee, WI, testimony is highly orchestrated. Sequestration orders bar the presence of witnesses from the courtroom unless they are testifying. The first witness, almost always the complainant, is not present when the forensic nurse testifies. Early in the forensic nurse’s testimony, the prosecution provides a body map, and the map is introduced as an evidentiary exhibit so that the jury can consider this anatomy lesson in its search for truth. The map depicts two views of a vulva, referred to as a “vagina” in the shorthand of the court, more or less from the perspective of someone standing or sitting between a patient’s legs as they are held in stirrups. One of the views on the map includes a detailed view of the cervix, which can be visualized with the assistance of a speculum. The images are neat and simple, with black line drawings that belie the fleshiness of human bodies. The absence of the victim-witness during the forensic nurse’s testimony further alienates the corporeality of the body from its sanitized renderings. The sequestration order reproduces the work of the drape in gynecological examinations, separating persons and pelvises (Kapsalis 1997; Mulla 2014). As adjuncts to the testimony of the victim-witness, these maps serve as the basis for the jury to move forward in their deliberations over whether or not there is evidence beyond a reasonable doubt that a crime, in this case sexual assault, has been committed.
During the trial, the nurse responds to the prosecutor’s questions, explaining how and what we are seeing, and how these body parts function. When they describe the tissue of the “vagina”, the forensic nurses testify that vaginas are “made to have sexual intercourse often”; “lubricated”; “very stretchy”; similar to the membrane of the mouth — a mucus membrane”; “like a scrunchy” in reference to a tool for holding back the hair; “able to accommodate something the size of a watermelon”; and “a self-cleaning vessel.” These descriptions, of a lubricated, stretchy, self-cleaning membrane that is likened to the mouth (“Think how quickly your mouth heals when you bite it or have a sore?” a nurse might ask) assist the jury’s understanding of the minimal or absent injury in the sexual assault case being adjudicated. One nurse told us that once when she had testified, she removed her scrunchy from her ponytail, demonstrated its elasticity, and replaced it as a demonstration from the stand. Even as the testimony supports the jury’s ability to render a verdict, it also normalizes the vagina as distinctly gendered by invoking the qualities of a “vagina” through the feminized person of a nurse who uses gendered language to speak to the jury (Martin 1991). The nurse herself belongs to a profession which is over 90% female in the U.S., with deep roots in female religious orders, while the form of labor associated with nursing practice is itself intensely feminized. This normalization of gendered bodies participates in the normalization of sexual violence as heterosexual and heteronormative (Gavey 2005).
Returning to the testimony of the forensic nurses, one can ask about the purpose of the nurses’ demonstratives. Why use a scrunchy to illustrate the tensile nature of vascular tissues? Why not a timing belt, or a rubber band, or some object with a less (or differently) gendered provenance? The nurses’ testimony largely explains why there is “nothing to see.” The injured vagina, in these cases, is cast as inscrutable (and objectified, universal, capacious, yielding, heteronormative, resilient, reproductive, and a slew of other, mostly troubling, things). Pratiksha Baxi has productively described the relationship of medical expertise to the law in her in-depth ethnography of the sexual assault trial in India, Public Secrets of Law. Critiquing the longstanding reliance on the medical category of the sexual habitue in India’s law courts, she argues that there is no medical knowledge outside the law. It is the law that determines the status of disciplinary expertise, exemplified, for Baxi, in the enduring use of the two-finger test, in the Indian court of law.
This holds true in the context of law courts in the U.S., where accounting for the lack of injuries on a sexual assault victim, the nurse’s descriptions give context to a body that does not give up its secrets through the revelation of physical evidence. The experts — forensic nurses in these cases — can sometimes locate the microinjuries that laypeople will not see. These will be described by the forensic nurse as she testifies to what she saw when she conducted her examination. During the proceedings, the prosecutor often asks the forensic nurse to render the injuries onto a body map. This body map is then proffered as yet another evidentiary exhibit (Figure 2). This visual representation of the wound is, like the unwounded body map pictured above, still devoid of its fleshiness. Photographs of the genital examination, which are often a part of the medical trial, do not make their way into the law courts as prosecutors find that body maps, helpfully narrated by forensic nurses, are more effective conveyances of information. The body maps, unlike photographs, do not invite the same visceral response of disgust from the jury, a phenomenon that many prosecutors seek to avoid (Mulla 2014).
While microinjuries are sometimes present, more often, formulating the pathology of sexual assault as Canguilhem might in The Normal and the Pathological, the symptoms of sexual assault cannot be localized. It may be a productive slippage to substitute “injury” for “pathology” and wonder how to teach the jury to see when there are no visible wounds to mark the assaulted body. In the course of the sexual assault trial, the truth of sexual assault must be established through the painstaking and deliberate introduction of testimony. Between the nurses, social workers, police detectives, and crime lab analysts who are the most frequent expert witnesses participating in the trial, a variety of absences were explained away: the lack of injuries, lack of finger prints, imperfect DNA matches or the absence of DNA altogether, and delays in disclosure by victims of sexual assault. Whether compelling and insistent, or repetitive and tedious, the parade of witnesses who testify to the absence of evidence establishes that the lack of physical evidence is securely normal. The systematic materialization of the lack of evidence makes way for the testimony of the victim herself (or on occasion, himself). In A Theory of the Trial, Robert Burns writes,
“evidence is logically relevant if [the link between evidence and the proposition being offered] is supported by ‘experience or science,’ or, somewhat more technically, if that link, which constitutes the ‘probative value’ of the evidence presented, is secured by a ‘major premise’ that exists in our common sense (the ‘web of belief’) and which a reasonable jury could conclude was applicable to the evidence submitted” (1999: 22).
In the case of the sexual assault trial, the notion of what we can call vaginal durability is evidenced by supplementing jurors’ common sense: their mouths or a stretchy scrunchy or a reflection on the notion that women who bear children most often recover from laboring and birthing.
Here, courtroom ethnography illuminates the day-to-day practices of the trial court, ordinary events which are rarely captured in other forms of legal scholarship that focus on case law, or law at the level of precedent. This is how law is lived. Seated in a trial court for many months, I took note of the ceremony of repetition, the formulas that are proffered when adjudicants are on the record, and the care and thought that attorneys placed on selecting their witnesses, sequencing their witnesses, eliciting testimony on direct and cross-examination, and emphasizing unmarked body maps. My fieldwork frequently circled back to the ways in which forms of knowledge making during the sexual assault trial normalized the absence of injury by deploying a scaffolding for interpreting the findings of a pelvic examination, reinscribing a gendered understanding of the “vagina.” The conventions of the examination, such as draping, were conveyed through the court’s practice of witness sequestration, and its use of expert testimony that follows the complainant’s testimony, speaking to the victim-witness’ experience. It was the prosecution’s goal that the jury, compelled by the argument that a lack of physical evidence is normal, would then rely on the victim-witness’ testimony to make their findings. In the circumscribed space of a criminal trial, the justice system became one more space in which the singular experiences of particular victim-witnesses are shaped into familiar and normative narratives of gendered violence, while, regardless of the outcome of a legal case, nursing expertise serves to impart and normalize the “vagina” itself through a universalized rendering that can only be understood through the nurse’s expert intervention.
Pratiksha Baxi. The Public Secrets of Law: Rape Trials in India. Delhi and London: Oxford University Press.
Robert P. Burns. 1999. A Theory of the Trial. Princeton and Oxford: Princeton University Press.
Georges Canguilhem. 1989. The Normal and the Pathological. New York: Zone Books.
Nicola Gavey. 2005. Just Sex? The Cultural Scaffolding of Rape. New York: Routledge.
Terri Kapsalis. 1997. Public Privates: Performing Gynecology from Both Ends of the Speculum. Raleigh and Durham: Duke University Press.
Emily Martin. 1991. “The Egg and the Sperm: How Science Has Constructed a Romance Based on Stereotypical Male-Female Roles,” Signs. 16(3): 485-501.
Sameena Mulla. 2014. The Violence of Care: Rape Victims, Forensic Nurses, and Sexual Assault Victims. New York: New York University Press.
Sameena Mulla is Assistant Professor of Anthropology in the Department of Social and Cultural Sciences at Marquette University. Her book, The Violence of Care: Rape Victims, Forensic Nurses, and Sexual Assault Victims, details all of the labor that forensic nurses put into examining sexual assault victims, and how victims experience the exam preceding the trials she observed with her collaborator, Heather Hlavka. She is currently working on her next project, co-authored with Hlavka, based on the courtroom ethnography of sexual assault adjudication in Milwaukee, Wisconsin. Together, they observed over 630 court appearances in felony court, including 32 full sexual assault trials.
In this article, I argue that the Zora Neale Hurston’s early twentieth-century anthropological work and the Combahee River Collective’s 1977 Black Feminist Statement can be read as part of a genealogy of Black feminist empiricism: a minor empiricism that rejects positivist empiricism, strategically mobilizing dominant scientific practices while also developing an onto-espistemology specific to Black English and what Combahee terms “black women’s style.” Their works make tactical use of positivist empirics to critique and counter legal and medico-scientific circumscription of Black women’s lives, while simultaneously participating in this counter-practice of Black feminist empiricism. As both Combahee’s statement and Hurston’s first ethnography, Mules and Men (1935), reveal, Black feminist empiricism is grounded not in traditional scientific virtues such as transparency and objectivity, but instead in opacity and subjectivity, which make it unavailable for use for purposes of legal subjection, while simultaneously revealing the raced and gendered implications of a legal system dependent on positivist values.
Surrogate Humanity: Posthuman Networks and the (Racialized) Obsolescence of Labor
Neda Atanasoski, Kalindi Vora
Historical forms of domination and power, encompassed but not limited to social categories and hierarchies of difference, get built into seemingly non-human objects and the infrastructures that link them, thus sanitizing digital media technologies as human-free. Rather than questioning the epistemological and ontological underpinnings of the human, fantasies about the revolutionary nature of new media and technology developments as posthuman carry forward and re-universalize the historical specificity of the category “human” whose bounds they claim to surpass. To begin to theorize some of the ways in which the notion of a revolutionary network of humans and things is both racial and racializing, the first part of this article develops a reading of Sylvia Wynter’s theorization of modern “man” as fundamentally constructed through racial-scientific notions of the biological and economic. We then think Wynter’s notion of homo-oeconomicus alongside Rifkin’s postulation that in fact the infrastructure revolution marks a paradigm shift away from capitalism. Through an analysis of several contemporary platforms (including Alfred and Amazon Mechanical Turk), we address the global-racial erasures and disappearances undergirding techno-utopic fantasies of a post-labor society. At the same time, as we argue, it is insufficient to merely point out the way in which human racialized and gendered labor underwrites techno-utopic fantasies. Instead, we move to a consideration of the epistemological and material shifts as well as legacies tied to prior post-Enlightenment revolutionary thought, such as that of Franz Fanon, to reconceptualize who or what can count as human. In conversation with feminist science studies scholarship on the posthuman, we grapple with what it means to think the subject of labor, and the human as subject, outside of the biological-economic imperatives of prior imaginaries.
This article traces the earliest identified recorded descriptor for viral infection: the racialized Spanish expression “el tabaco se ha mulato” (“the tobacco has become mulatto”). The phrase appears in the late nineteenth-century travel writing of French colonial scientist Jules Crevaux, written as he journeyed through post-Spanish Independence Colombia and observed the demise of the once-thriving tobacco industry. I theorize the literary translations and visualizations, or what I call “visual translations,” of the phrase across scientific and historical texts that cite Crevaux to track the refraction of racial, gender, and sexual discourses in virology. I argue that the phrase refers to the historically dispossessed Indigenous and Black subjects of the nascent Colombian republic and their resistance to subjection when forced to work the tobacco fields. The article historicizes virus discovery at the juncture between science, nation-building, global industrialization, and the disciplining of race and sex under the long shadow of Euro-American empire. Drawing upon Ed Cohen’s concept of “viral paradox,” Nayan Shah’s notion of “strangerhood,” and Mel Y. Chen’s framework for thinking about “queer animacies,” I deconstruct the visual, conceptual, and etymological roots of the phrase “el tabaco se ha mulato” to argue that the expression renders the virus as both “queer” and “strange” to the nation. The virus signifies the mulato subject as a stubborn challenge to racial hierarchies and to the host-guest-parasite relation, both of which are foundational to the social organization of the nation and polis. This signification insistently refuses the human/non-human binary that undergirds racial regimes and biological conceptions of life. In turn, I expand historical thinking about race, submit that pandemics result from global industrial resource extraction rather than merely poor hygiene, and offer a framework for “queer decolonizing.”
This article considers wide-ranging heart-centered approaches to understanding bodies, objects, and personhood. It puts these into in tension with other ways of approaching questions of life and embodiment, especially ones inspired by neuroscience, to argue that thinking with the heart has value for feminist theory. The heart that is my object traverses scale, and the paper’s analysis moves from the inside out – from heart cells, to hearts and circulatory systems, to women interpellated into heart health, to public debates on personhood that mobilize fetal heartbeats and contested cases of women on life support. I draw on biological and lay ways of understanding the heart, and on mundane intimacy of knowledge of the heartbeat as a sign of life and personhood. Articulating the body through the heart provides opportunities to theorize the body and the object in new ways, pushing back against rhizomic and egalitarian aspirations and toward nuanced accounts of power. The engagement with the heart is speculative and wide-ranging, a provocation for feminist theorists to think with the heart.
An excerpt from Elizabeth A. Wilson’s book, Gut Feminism, which was published in August, 2015.
Remembering the late 19th century deployment of spiritualist technologies (divining rods, witching sticks) to locate oil deposits in the Americas, this visual essay situates U.S. petroleum culture in an occult genealogy of capitalist sorcery and supernatural materialism. The essay re-imagines the branded “BP” oil spill as an enchanted disaster unfolding across implicate orders of colonial phantasm, new subsea infrastructures of petro-capitalism, and the mundane inferno of deep time. How to envision the BP disaster—and its expansive subsea digital archive—as a ‘magic site,’ where natural and supernatural blend? What can magical subrealism offer as both an analytics of contemporary power and a style of performative feminist conjuring? How really to think, with oil, the thought that thought may be unhuman?
The Vanishing Object of Technology
This video essay offers a poetic meditation on the changing ecology of our everyday technical setups. It focuses on the gradual disappearance of cables, leads, and wires from behind of our computers, music systems, TV sets, kitchen equipment, and other domestic devices that rely on the continuous supply of electricity for their functioning, to explore the aesthetics of such workaday entanglements. Interweaving shots from underneath the artist’s desk taken over a period of one month into a haunting installation of lines, grids and traces, it proposes an intertwined textual and visual engagement with a unique moment in the history of technology.
On Writing About Illness: A Dialogue with S. Lochlann Jain and Jackie Stacey on Cancer, STS, and Cultural Studies
S. Lochlann Jain, Jackie Stacey
In this dialogue, S. Lochlann Jain and Jackie Stacey put into conversation their respective monographs, Malignant and Teratologies. Drawing on perspectives in feminist science studies and cultural studies, the discussion dovetails their first-person accounts and the critical analyses in their books.
Difference Work: A Conversation with Lilly Irani
Lilly Irani, Monika Sengul-Jones
In this interview, Lilly Irani draws on her decade of ethnographic research into globally distributed micro-labor and her experiences with Turkopticon to sharply articulate for us what’s at stake in these processes—and how and why “virtual work” and “digital labor” matter conceptually for the politics of feminist science and technology studies.
Science & Justice: The Trouble and the Promise
Jenny Reardon, Jacob Metcalf, Martha Kenney, Karen Barad
Over the course of the last five years, a worldwide financial crisis combined with plummeting trust in institutions has led to significant changes in the organization and funding of research and education. These changes have troubled the very foundations of universities, but they also have created new opportunities to re-imagine and re-form practices of knowledge production, a key concern of Science and Technology Studies (S&TS) and feminist science studies (FSS). Here we reflect on how these changing institutional landscapes as well as increased demands for substantive ethics training create openings for novel institutional practices that embody core insights of S&TS and FSS. Specifically, we describe the creation of the Science & Justice Graduate Training Program at University of California, Santa Cruz. Taking its inspiration from recent feminist science studies re-workings of responsibility as response-ability, the SJTP created novel pedagogical and research practices that enabled collaboration across all divisions of the University. A focus on justice proved critical to our efforts. In its call to attend to the first principles that shape collective life, justice allowed us to open up the space of research ethics in novel ways, and helped us to create the basis for working across disciplines on shared problems and objects. As S&TS and FSS increasingly move toward generating new modes of gathering and practices of care, we suggest that justice might open up models of collectivity that fit better with the current zeitgeist and produce the kind of responsive knowledge and institutions long imagined.
A Discussion on Experiments and Experimentation: NIH to Balance Sex in Cell and Animal Studies
Daphna Joel, Anelis Kaiser, Sarah S. Richardson, Stacey A. Ritz, Deboleena Roy, Banu Subramaniam
In 2014, the National Institutes of Health (NIH) proposed a new policy to promote “sex parity” in research. As an extension to the 1993 NIH Revitalization Act which mandated the inclusion of women and minorities in clinical trials, the new NIH policy will require scientists to include “sex” as a variable in both animal model and in vitro cell line-based research. The end goal is to ensure that NIH funded scientists “balance male and female cells and animals in preclinical studies in all future applications” (Clayton and Collins 2014, 283). The curators of this section asked four interdisciplinary scholars to discuss this proposed policy.
Ebola and its Discontents
Elke Mühlberger, Deboleena Roy, Pamela Scully, Banu Subramaniam, Jennifer Terry
In the wake of the Ebola outbreak, the editorial board curators of this special section ask three interdisciplinary scholars to reflect on the global pandemic.
This series aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. In this interview, Greg Downey responds to questions posed by series organizer Jeffrey G. Snodgrass.
How and why might cultural anthropologists and social scientists interested in health benefit from integrating biological variables/biomarkers into their research and analysis?
I’m not particularly interested in health, to tell the truth. My research is about skill acquisition and enculturation, especially the biological consequences of these processes, such as specialised neural functioning, sensory plasticity, and embodied adaptation to behavioural patterns. The first reason biomarkers of a variety of sorts are useful is just to demonstrate that these sorts of physiological adaptations are happening in response to cultural-developmental regimens. The artificial separation of cultural and biological approaches, or of cognitive and brain research, can suggest that the brain or body are biologically determined or universal or innate, but the things we do with them are not. Sometimes the argument is that the brain is hardware and ‘the mind’ or ‘culture’ is software, or some such metaphor. Everything we know about neurological functioning suggests that the division is impossible to uphold, that skill-related refinement and patterns of use lead to architectural, functional, and connection changes in the brain, in non-conscious behaviour, and even in gross anatomy, such as skeletal remodelling or muscular hypertrophy. This is a long way of saying that biomarkers are important for my research to show that culture has biological consequences on basic human functioning.
How would you respond directly to one potential cultural anthropological or social scientific critique of such an integrative “biocultural” approach?
When I have presented work to cultural anthropology audiences unfamiliar with my research, I will often have someone imply that talking about the biological consequences of skill acquisition or sensory learning is inherently “reductionist,” as if any mention of a body part or brain system necessarily is a rush to throw out all other considerations. I’ve never really understood this critique, except as a knee-jerk response of defensiveness. To me, “reductionism” is the assumption that complex emergent processes can be explained by reference to smaller processes at lower levels of system analysis. On some level, every explanation that is not simply description is going to be “reductionist.” Marxist analysis is notoriously “reductionist” in that sense. Post-structuralism is reliably “reductionist.” Structuralism was fantastically “reductionist.” If anything, when I see the complex neural-functional explanations of skilled performance, they look even more byzantine and complicated than even a fairly thorough descriptive account of what is happening in terms of overt behaviour and observable phenomena. And the whole thrust of considering the biological, neurological, and perceptual consequences of training and enculturation is to demonstrate how “top down” influences can restructure what are sometimes considered the substrates of that behaviour, such as brain anatomy.
Sometimes, I worry that anti-biocultural stances are just sort of well-rehearsed ritualised rhetorical moves, a kind of theory ‘kata’ that some people engage in, not recognising that the rehearsed situations are artificial. They are not so much a response to what we present as they are a comfortable, familiar way of rallying the like-minded. Of course, the reason that these ritualised rejections exist is because we have been preceded by generations of theorists who DID try to do the sort of pay-no-attention-to-emergent-properties reductionism that some of our critics think we are attempting. The brain sciences, like genetics, are susceptible to the sort of facile explanatory tricks that people who are really unfamiliar with either science find compelling (‘genes cause behaviour’ or ‘a part of the brain is “designed” to serve one function’).
What is one potential caution you’d have for cultural anthropologists or social scientists considering a biocultural approach?
If I have one caution, it’s: don’t think it’s going to be quick or easy. The closer you get to biological processes, at least the ones I’ve looked at, the more difficult it can be to speak authoritatively or definitively about their relationship to culture. I often wish I could just resort to the “wiggle words” I used to use before I got seriously involved in this area, like saying this or that cultural process was “embodied” and thinking that this meant something or was the resting point for my analysis. Even really simple facts about neurophysiological enculturation can be a veritable rabbit hole of complexity, and cause and effect sometimes become less clear the more you know. For example, signalling processes in the brain include a lot of chemicals that, if you don’t know much, might be easy to explain. We read these sorts of glib analyses in the popular press: oxytocin is the ‘tending and befriending’ molecule, or dopamine is the ‘pleasure’ signal. Anyone closer to this research knows that these sorts of processes are much more complex, and we cannot let the use of biomarkers reinforce a too-quick-to-be-satisfied rush to explanation. In my own research, which often can be seen as anti-innatist or anti-essentialist biology, I have to keep reminding myself and others that the possibility of plasticity in some systems in no way suggests that starting points are equivalent: innate “talent” is still a possibility. In fact, it’s likely given what we know about the diversity of neurological endowment and development.
What is one piece of research (ideally your own) that points to the benefits of such an integrative approach?
I don’t actually use a lot of biomarkers in my own work, although it’s an area I’m exploring right now. Because I work on sensory processes and skilled behaviour, I’m much more likely to use traditional ethnographic methods and simple psychological research techniques. But I’m also drawing heavily on lab-based research to try to see where in sensory processing and motor control there might be the sort of plasticity that is observable in human behaviour. In that sense, I’m an empirically-informed theorist of brain function in observable behaviour and performance, but I don’t have the money, facilities, or inclination to try to get these things into an imaging laboratory. I’ve been approached about doing that work, but the requirements of the research design to do a rugby-based project in a visual simulator (for example) so that you can brain scan a participant are so artificial that I’m deeply suspicious about the ecological validity of any of this testing. Instead, I’ve been experimenting with a range of other techniques, like head-mounted video in real games, biometric data on fatigue and heart-rate, and other observation techniques.
What is a good reference that cultural anthropologists or social scientists interested in such an approach could use to get started?
I’m so impressed with the work of my colleagues, especially people like Jeffrey Snodgrass, Rebecca Seligman, Carol Worthman, Chris Lynn and many others. I suspect that there are many more, especially in medical anthropology, that I would love to learn about, but just haven’t come across because it’s been a while since I’ve done any sort of broad survey of this area. (You have to remember, my focus is really sensory processes and motor training, so a lot of cool developments happen in medical and psychological anthropology that it usually takes me a couple of years to catch up on — thank god I have Daniel Lende to point some of the more interesting ones out to me!)
I think we’re entering a period where this type of research is only going to expand and get stronger. A lot of the venom in the biology-culture wars in anthropology seems to have drained out. Every once in a while we get a little spasm of it, like with the ‘science’ deletion skirmish in the AAA, but I’m reassured that most of the people who want to jump right in on one side or the other are either members of older generations of anthropologists or very retro-sounding young anthropologists who, in my opinion, can be persuaded that the war is over. As I’ve written about elsewhere, I think that the field is ripe for a range of integrative projects, and progress in other fields — including methodological breakthroughs in the way we can get data on biomarkers — make this an area where anthropology can really expand in theoretical and applied fields. Specifically in the brain sciences, my opinion is that the growing refinement of neural imaging has actually caused a real excitement about neurological diversity, cross-cultural imaging, and other themes that are amenable to cultural anthropologists. The more people we image, the less we’re persuaded by innatist arguments or accounts of brain function that map a one-to-one relationship between a brain region and psychological function (the kind that evolutionary psychologists once argued for around “mental modularity,” for example). If anything, the increased interest in brain diversity should expand the audience for what we do. Of course, we’ll have to make sure that we’re actually communicating in ways that they can make sense of.
Greg Downey is Associate Professor and Head of the Department of Anthropology at Macquarie University in Sydney. Greg conducts research on skill acquisition, sensory change and phenomenology, especially in the Afro-Brazilian martial art and dance, capoeira, and sport more broadly. He is author of Learning Capoeira: Lessons in Cunning from an Afro-Brazilian Art (Oxford 2005), and co-editor with Daniel Lende of The Encultured Brain: An Introduction to Neuroanthropology (MIT 2012). Greg writes extensively on the weblog Neuroanthropology, as well, which he founded with Lende. His current research explores the rise of explicit training in echolocation among the blind and the sensory activism of World Access for the Blind.
“Bioculturalism” aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. It is edited by Jeffrey G. Snodgrass.
Christian McMillen’s Discovering Tuberculosis is many things, but mostly it is an account of failure. The book is a story of disease control in the twentieth century that is anything but controlled. McMillen gives needed attention to problems of the past that find themselves – unexpectedly, dangerously – occupying our present moment (though it should be made clear from the outset that McMillen’s is not an account built on sweeping claims, easy prescriptions, or vitriol of a predictable political character). McMillen tells a story that is pointed and detailed, unrelenting and often exasperating, and yet surprisingly measured, not diffident but aware of the stakes of telling: “As we historians get closer and closer to the present we get nervous, because we inch closer and closer to no longer being historians” (224). McMillen pulls tuberculosis from the twentieth century into the present without sacrificing the fullness of its history.
We hope you enjoy the comments on Christian McMillen’s Discovering Tuberculosis and his response.
Comments on Christian McMillen’s Discovering Tuberculosis: A Global History, 1900 to the Present (New Haven: Yale University Press, 2015):
Tuberculosis and the Danger of Forgetting Past Failures
Global Tuberculosis — Lessons Learned, Lessons Lost
University of Oslo
A Remembrance of People Lost: Epidemiology and History
Response to comments:
In addition to special issues highlighted earlier this month on Somatosphere — Limn (on “Ebola’s Ecologies“), the Annals of Anthropological Practice (on “Community Health Workers and Social Change: Global and Local Perspectives“), and Social Theory & Health (entitled “Theorising Health Inequalities” — the month provided, as always, a bevy of good reading, including a special section of Social Studies of Science on the ontological turn (see below). Enjoy!
The racialization of individuals in the contemporary United States is increasingly accomplished through institutional actors, including scientists and physicians. As genetic health risks, chronic disease treatments, and pharmaceuticals come to define Americans’ understanding of themselves, a fundamental shift is occurring in the way medicine is practiced and its role in the production of subjectivity. Underlying these changes is an expectation of orderly bodies—of “white” bodies that exemplify social and cultural norms of biology and behavior. Fundamental to U.S. medical ideas of normativity is that the white heteronormative subject is the standard against which disorderly and nonwhite subjects are to be judged. I explore these ideas through the history and contemporary world of sleep: the clinical production and interpretation of related scientific data, advertising use of images of sleep-disordered patients who have been “cured,” and experiences of nonwhite Americans within mainstream sleep medicine.
Patients of Venezuelan state clinics ascribe meanings to doctor–patient interactions that reverberate beyond the immediacy of the clinical encounter to shape political subjectivities. They seek not just medical goods and services from clinical interactions but also expressions of recognition, respect, care, and solidarity from doctors. I argue that patients who had long resented what they saw as the Venezuelan state’s broken promises to use national oil wealth to provide for its citizens now read its efforts to address sociopolitical inequalities in the bodily dispositions of its medical workers. Combining anthropological approaches to doctor–patient interactions and to medical embodiment, I show how doctors’ embodied practices can render biomedical encounters politically significant for patients, activating or foreclosing a sense of sociopolitical belonging. In doing so, I demonstrate how sociopolitical orders are constructed and challenged through the intimacies of biomedical practice.
Cultural Anthropology (Open Access)
Chronic domestic chemical exposures unfold over protracted timelines and with low velocity. In this article I argue that such microscopic encounters between bodies and toxicants are most readily sensed by less nameable and more diffuse sensory practices. The apprehension of conventionally insensible toxic exposures is informed by sustained attention to barely perceptible alterations of somatic function and atmosphere. Slight biochemical impressions, which at first appear simply meaningless or puzzling, accumulate in the bodies of the exposed and reorient them to the molecular constituents of the air and the domestic infrastructure from which such chemicals emanate. Through the articulation of these small corrosive happenings, residents of contaminated homes can accumulate minute changes to body and atmosphere across time and space in a process I call the “chemical sublime,” which elevates minor enfeebling encounters into events that stir ethical consideration and potential intervention. The chemical sublime is a late industrial experience that inverts an Enlightenment-era, yet still dominant, conception of the sublime. Across authoritative and questioned bodies, companion species and humans, this essay asks: in what ways do diffuse sensory practices generate knowledge of, attention to, and engagements with the chemical world?
Philosophy, Ethics, and Humanities in Medicine (Open Access)
Medical professionalism: what the study of literature can contribute to the conversation
Johanna Shapiro, Lois L. Nixon, Stephen E. Wear, and David J. Doukas
Medical school curricula, although traditionally and historically dominated by science, have generally accepted, appreciated, and welcomed the inclusion of literature over the past several decades. Recent concerns about medical professional formation have led to discussions about the specific role and contribution of literature and stories. In this article, we demonstrate how professionalism and the study of literature can be brought into relationship through critical and interrogative interactions based in the literary skill of close reading. Literature in medicine can question the meaning of “professionalism” itself (as well as its virtues), thereby resisting standardization in favor of diversity method and of outcome. Literature can also actively engage learners with questions about the human condition, providing a larger context within which to consider professional identity formation. Our fundamental contention is that, within a medical education framework, literature is highly suited to assist learners in questioning conventional thinking and assumptions about various dimensions of professionalism.
The aim of this article is to analyse the popular perception of the nightmare in medieval Europe. The first section will explore the ways in which the base experience of the nightmare (as documented in neuropsychological research) was interpreted according to Church doctrine, classical dream theories and Galenic medicine. Then, with reference to the remedies used to protect the body against the mara found in Anglo-Saxon medical manuals and the tales of demonic/ghostly assault from twelfth-century Anglo-Norman literature, it will be seen how the authoritative interpretations of the nocturnal assault were replicated, rejected or interpolated in the rhythms of daily life. Ultimately, this article will argue that the nightmare experience can be read as an independent ‘text’; a universal function of the human body that is given substance and coherence depending on the habits, experiences and fears of the percipient.
Using the correspondence of Catalina Micaela (1567–97), Duchess of Savoy, with her husband, Carlo Emanuele I as evidence, this article examines an early modern aristocratic woman’s experience of and attitudes about pregnancy, childbirth, lactation and menstruation. Her letters reveal that some early modern women closely monitored their bodies and from their observations were able to detect pregnancy early—earlier than many scholars have thought—and to calculate their delivery dates with some precision. Her example also shows that their husbands and fathers could be closely involved in the world of pregnancy and childbirth and that, while other scholars have argued that the lying-in period empowered and liberated women, Catalina remained tied to her political responsibilities and was expected to return to her duties immediately after giving birth. Catalina’s well-documented experience thus both enlarges and in some cases challenges the scholarly understanding of early modern pregnancy, childbirth and the confinement period.
‘Nature Concocts & Expels’: The Agents and Processes of Recovery from Disease in Early Modern England (open access)
The ‘golden saying’ in early modern medicine was ‘Nature is the healer of disease’. This article uncovers the meaning and significance of this forgotten axiom by investigating perceptions of the agents and physiological processes of recovery from illness in England, c.1580–1720. Drawing on sources such as medical texts and diaries, it shows that doctors and laypeople attributed recovery to three agents—God, Nature and the practitioner. While scholars are familiar with the roles of providence and medicine, the vital agency of Nature has been overlooked. In theory, the agents operated in a hierarchy: Nature was ‘God’s instrument’, and the physician, ‘Nature’s servant’; but in practice the power balance was more ambivalent. Nature was depicted both as a housewife who cooked and cleaned the humours, and as a warrior who defeated the disease. Through exploring these complex dynamics, the article sheds fresh light on concepts of gender, disease and bodies.
Ignored Disease or Diagnostic Dustbin? Sudden Infant Death Syndrome in the British Context (open access)
Angus H. Ferguson
Sudden Infant Death Syndrome (SIDS) was defined in 1969 and incorporated into the International Classification of Diseases a decade later. To advocates of SIDS as a diagnosis, medical interest in sudden infant death was long overdue. However, the definition of SIDS lacked positive diagnostic criteria, provoking some to view it as a ‘diagnostic dustbin’ for the disposal of problematic cases where cause of death was unclear. This paper examines the development of medical interest in sudden infant death in Britain during the middle decades of the twentieth century. It highlights the importance of recognising the historicity of SIDS as a diagnosis facilitated by changes in law and medicine over the course of the nineteenth and twentieth centuries. It suggests that SIDS provides a definitive case study of the medicalisation of life and death, and a unique example of an officially recognised disease that had no symptoms, signs, pathology or patients.
Inhaling Democracy: Cigarette Advertising and Health Education in Post-war West Germany, 1950s–1975 (open access)
In the late 1960s and early 1970s, the West German government was faced with the challenge of addressing a damaging health behaviour, smoking, in the context of an emerging late modern democracy, when the precedent for addressing that behaviour was set in the Nazi past. This paper details the two-pronged approach which the government took: seeking restrictions on cigarette advertising, whilst educating young people to adopt positive health behaviours in the face of pressure to smoke. This approach can be understood in the social and economic context of the time: an economic commitment to the social market economy worked against restrictions on the sale of cigarettes; whilst concerns about past authoritarian structures prompted the health authorities to seek novel ways of addressing smoking, emphasising choice. In a nuanced way, post-war anti-smoking strategies were a response to West Germany’s National Socialist past, but more importantly, a signal of an increasingly international outlook.
Robert Saunders was a surgeon on the British Turner expedition to Tibet in 1783–85. In 1789, Saunders published a description of a mercury processing method for treating ‘the venereal disease’ that he witnessed at Tashilhunpo. Since Saunders himself used mercury for his patients, the question arises whether he described a Tibetan method of processing mercury or projected his own experiences on what he saw. This paper traces parallels of his description and analyses venereal diseases in Tibetan medical texts. The symptoms described in these texts cannot be easily equated with modern syphilis. This article explores the following questions: How were venereal diseases classified in Tibetan medical texts? Were mercurials mentioned to treat them? Were they intended to cause salivation? In answering these questions, the heterogeneity and exchange of medical practices in Tibet from the seventeenth to the early twentieth century, involving the use of mercury for venereal treatments, becomes apparent.
Historically, venereal disease (VD) has represented a significant manpower problem for the armed forces and the Korean War (1950–53) was no exception. Amongst British, Australian, Canadian and New Zealand troops deployed to the Far East, rates of VD peaked at 387 cases per 1,000. Levels of infection far exceeded those recorded during the Second World War. Over the past several decades, historians have explored the intimate lives of fighting men throughout the twentieth century in great detail. Be that as it may, the Korean War has received little attention. This article represents the first analysis of the Commonwealth experience of VD. It examines how widespread the problem became, as well as the efforts to which officials went to reduce levels of infection. It also explores the reasons why venereal disease was so prevalent at this time and place, and why the Commonwealth Division, and the Canadians in particular, were so affected by it.
The study of the history of private practice in the NHS has generally been focused on either the introduction or the abolition of pay-beds. This article looks at the period characterised as the ‘Quiet Time’ when a political consensus seemingly emerged to retain some form of private provision within the service. This piece argues that rather than ‘a quiet time’ it was a period of intense activity and controversy as to the place and contribution of pay-beds when there were multiple attempts to rationalise and to make them cost effective. This article is an original study of a much-neglected subject in public policy history.
With the migration of the written record from paper to digital format, archivists and historians must urgently consider how web content should be conserved, retrieved and analysed. The British Library has recently acquired a large number of UK domain websites, captured 1996–2010, which is colloquially termed the Dark Domain Archive while technical issues surrounding user access are resolved. This article reports the results of an invited pilot project that explores methodological issues surrounding use of this archive. It asks how the relationship between UK public health and local government was represented on the web, drawing on the ‘declinist’ historiography to frame its questions. It points up some difficulties in developing an aggregate picture of web content due to duplication of sites. It also highlights their potential for thematic and discourse analysis, using both text and image, illustrated through an argument about the contradictory rationale for public health policy under New Labour.
This paper provides a guide to finding historical records of the National Institutes of Health (NIH), the US biomedical research agency funded by the federal government, and one of the world’s largest research funding bodies. Such records are important to an understanding of the development of medicine and biomedicine after the Second World War, yet they can be difficult to find in the organizational maze that is the NIH. This article provides information on where records might be found, the ways in which such records might be obtained, and how the NIH manages the vast quantity of records it produces.
Based on a realist conceptualization of interests, this paper explores how commercial and scientific priorities appear to have converged and diverged during the development of the antidepressant Zelmid. The drug represents the first of the selective serotonin reuptake inhibitors (SSRIs) to reach the market. Zelmid was synthesized in 1971 and launched by the Swedish firm Astra in 1982, but subsequently withdrawn the next year because of adverse neurological effects. This paper draws on in-depth interviews with scientists representing both industry and academia who had high-level involvement in various phases of the project (experimental, pre-clinical and clinical), as well as on textual sources such as scientific articles and memoirs. Zelmid was a product of mechanism-based or “rational” drug discovery from the early 1960s and the associated intermingling of science and commerce. It is argued that both scientists and the pharmaceutical company shared an interest in embracing mechanism-based drug discovery because it simultaneously promised medico-scientific advances and profits. However, the intermingling of science and commerce also strained the relationship between scientific and commercial priorities further along the trajectory of the drug; for example, concerning issues such as dosage strategy and drug use in primary care, where corporate management allegedly took decisions contrary to the recommendations of both academic and company scientists. On such occasions the asymmetry in power became apparent in scientists’ narratives: commercial considerations trumped those of science since, ultimately, decisions rest with management, not with scientists. In addition, temporality appears to be associated with the divergence of commercial and scientific priorities. While rare during experimental and pre-clinical phases, divergence was concentrated downstream to the clinical testing and post-marketing phases. It is hypothesized that a similar pattern of convergence and divergence of commercial and scientific priorities may exist in the trajectory of other drugs.
Ready to give up on life: The lived experience of elderly people who feel life is completed and no longer worth living
Els van Wijngaarden, Carlo Leget, and Anne Goossensen
In the Netherlands, there has been much debate on the question whether elderly people over 70 who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying. So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld. The aim of this paper is to describe the phenomenon ‘life is completed and no longer worth living’ from a lifeworld perspective, as it is lived and experienced by elderly people. Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis. The essential meaning of the phenomenon is understood as ‘a tangle of inability and unwillingness to connect to one’s actual life’, characterized by a permanently lived tension: daily experiences seem incompatible with people’s expectations of life and their idea of whom they are. While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents: 1) a sense of aching loneliness; 2) the pain of not mattering; 3) the inability to express oneself; 4) multidimensional tiredness; and 5) a sense of aversion towards feared dependence. This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample.
‘Healthy anorexia’: The complexity of care in disordered eating
Connie Musolino, Megan Warin, Tracey Wade, and Peter Gilchrist
This paper examines how contemporary understandings of ‘health’ and ‘care’ are engaged with and practiced by women with disordered eating. Based on findings from an Australian study investigating why people with disordered eating are reluctant to engage with treatment services (March 2012 to March 2015), we demonstrate how young women use elements of a ‘health habitus’ and ‘care’ to rationalise and justify their practices. Moving beyond Foucauldian theories of self-discipline and individual responsibility we argue that Bourdieu’s concept of habitus and ethnographic concepts of care provide a deeper understanding of the ways in which people with disordered eating embody health practices as a form of care and distinction. We demonstrate how eating and bodily practices that entail ‘natural’, medical and ethical concerns (in particular, the new food regime known as orthorexia) are successfully incorporated into participants’ eating disorder repertoires and embodied as a logic of care. Understanding how categories of health and care are tinkered with and practiced by people with disordered eating has important implications for health professionals, family members and peers engaging with and identifying people at all stages of help-seeking.
Approaches to the organization and conduct of cancer research changed dramatically throughout the 20th century. Despite marked differences between the epidemiological approaches of the first half of the century and molecular techniques that gained dominance in the 1980s, prominent 20th-century researchers investigating the link between sexual activity and anogenital cancers continuously invoked the same 1842 treatise by Italian surgeon Domenico Rigoni-Stern, who is said to originate the problem of establishing a causal link between sex and cancer. In this article, I investigate 20th-century references to Rigoni-Stern as a case of a broader phenomenon: scientists situating their work through narratives of venerated ancestors, or originators. By explaining shifting versions of originator narratives in light of their authors’ cultural context and research practices, we can reimagine as meaningful cultural symbols the references that previous scholars have treated as specious rhetorical maneuvers. In this case, references to Rigoni-Stern provide an interpretive anchor for American scientists to construct continuity between their work and a diverse historical legacy of cancer research.
The ontological turn: Responses and reply
Ontological turns, turnoffs and roundabouts
There has been much talk of an ‘ontological turn’ in Science and Technology Studies. This commentary explores some recent work on multiple and historical ontologies, especially articles published in this journal, against a background of constructivism. It can be tempting to read an ontological turn as based and promoting a version of perspectivism, but that is inadequate to the scholarly work and opens multiple ontologies to serious criticisms. Instead, we should read our ontological turn or turns as being about multiplicities of practices and the ways in which these practices shape the material world. Ontologies arise out of practices through which people engage with things; the practices are fundamental and the ontologies derivative. The purchase in this move comes from the elucidating power of the verbs that scholars use to analyze relations of practices and objects – which turn out to be specific cases of constructivist verbs. The difference between this ontological turn and constructivist work in Science and Technology Studies appears to be a matter of emphases found useful for different purposes.
Ontology, and in particular, the so-called ontological turn, is the topic of a recent themed issue of Social Studies of Science (Volume 43, Issue 3, 2013). Ontology, or metaphysics, is in philosophy concerned with what there is, how it is, and forms of being. But to what is the science and technology studies researcher turning when he or she talks of ontology? It is argued that it is unclear what is gained by arguing that ontology also refers to constructed elements. The ‘ontological turn’ comes with the risk of creating a pseudo-debate or pseudo-activity, in which energy is used for no end, at the expense of empirical studies. This text rebuts the idea of an ontological turn as foreshadowed in the texts of the themed issue. It argues that there is no fundamental qualitative difference between the ontological turn and what we know as constructivism.
This contribution encourages loosening the cast-iron mould of the ‘turn’ metaphor that the practices of general and ontology-related turn-talking/making in Science and Technology Studies forge and fortify. Could framing novel themes and thinking in terms of ‘turn’ be as good as fettering? Not specific to the ‘ontological turn’ or ‘turn to ontology’, but haunting Science and Technology Studies across the board to signify supposed tidal change, the metaphor warrants dissection. Thus, this commentary expounds four distinct yet not unrelated versions of ‘turn’ – rotation, change of course/direction, change in general and occasion/opportunity to act – together with the worlds they beget. Then, the operation of these ‘turns’ in the debates on the ‘ontological turn’ is pursued. Enactments of the first three modes/moulds of ‘turn’, all entailing and tainted by the inexorable directedness of change the coupled ‘turn to’ framing imparts, either debunk or qualify the extent of the professed ‘turn’, with the effect of betraying its conceptual and methodological offerings. The fourth version, less substitutable with ‘turn to’ and thus less infected by intransigent directedness, escapes the rigidity that diminishes the value of ontology-minded studies. Clear of either a resolution to the debate or an alternative trope to cure the maladies of ‘turn’, the conclusion wishes to open space for pondering how to metaphorize more consciously and judiciously evolution and innovation in Science and Technology Studies.
Missing the (question) mark? What is a turn to ontology?
Steve Woolgar and Javier Lezaun
Our introductory essay in this journal’s 2013 Special Issue on the ‘turn to ontology’ examined the shift from epistemology to ontology in science and technology studies and explored the implications of the notion of enactment. Three responses to that Special Issue argue that (1) there is no fundamental qualitative difference between the ontological turn and social constructivism, (2) we need to be wary of overly generic use of the term ‘ontology’ and (3) the language of ‘turns’ imposes constraints on the richness and diversity of science and technology studies. In this brief reply, we show how each of those critiques varies in its commitment to circumspection about making objective determinations of reality and to resisting reification. We illustrate our point by considering overlapping discussions in anthropology. This brings out the crucial difference between the science and technology studies slogan ‘it could be otherwise’ and the multinaturalist motto ‘it actually is otherwise’.
Disorder and disconnection: parent experiences of liminality when caring for their dying child
Joanne Jordan, Jayne Price, and Lindsay Prior
Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents’ experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents’ effective transition.
Constructing the meaning of ultrasound viewing in abortion care
Katrina Kimport and Tracy A. Weitz
As ultrasound scanning becomes increasingly routine in abortion care, scholars and activists have forwarded claims about how viewing the ultrasound image will affect pregnant women seeking abortion, speculating that it will dissuade them from abortion. These accounts, however, fail to appreciate how viewing is a social process. Little research has investigated how ultrasound workers navigate viewing in abortion care. We draw on interviews with twenty-six ultrasound workers in abortion care for their impressions and practices around ultrasound viewing. Respondents reported few experiences of viewing dissuading women from abortion, but did report that it had an emotional effect on patients that they believed was associated with gestational age. These impressions informed their practices, leading many to manage patient viewing based on the patient’s gestational age. Other aspects of their accounts, however, undercut the assertion that the meaning of ultrasound images is associated with gestation and show the pervasiveness of cultural ideas associating developing foetal personhood with increasing gestational age. Findings demonstrate the social construction of ultrasound viewing, with implications in the ongoing contestation over abortion rights in the US.
Explanations and expectations: drug narratives among young cannabis users in treatment (open access)
Margaretha Järvinen and Signe Ravn
This article analyses how young people enrolled in drug addiction treatment in Copenhagen, Denmark, explain their cannabis careers and how they view their possibilities for quitting drug use again. Inspired by Mead and narrative studies of health and illness, the article identifies four different drug use ‘aetiologies’ drawn upon by the interviewees. These cover childhood experiences, self-medication, the influence of friends and cannabis use as a specific lifestyle. A central argument of the article is that these explanations not only concern the past but also point towards the future by assigning the interviewee a more or less agential position in relation to drugs. Further, the drug narratives are viewed as interactional achievements, related to the social context in which they were produced, namely, the institutional setting of the treatment centres. The article is based on 30 qualitative interviews with young people in drug addiction treatment.
Risk and self-managing chronic joint pain: looking beyond individual lifestyles and behaviour
Andrew Morden, Clare Jinks, and Bie Nio Ong
Self-managing chronic musculoskeletal pain is predominantly framed within a discourse of modifying behaviour, or lifestyle risk factors such as diet, weight loss and exercise by policymakers, researcher and clinicians. Little research has been conducted which explores how ‘risk’ is understood or encountered by those with joint pain and how it may relate to self-management. Drawing from serial interviews and a diary study with 22 participants, the findings demonstrate that people with chronic pain engage in a process of assessing and adapting to hazardous or pain conferring situations in relation to daily activities. ‘Risks’ are embedded within a dialectic between corporeal experience and the design features of everyday social environments. Self-management, in this context, is not necessarily solely related to following clinical advice, rather it includes dealing with ‘risks’ of pain, hazards relating to bodily limitations and the environment, and ensuring the ability to continue with valued activities. Findings contribute to sociological understandings of self-management and risk while demonstrating the limits of viewing self-management as an individualised endeavour of changing behaviour.
‘The problem here is that they want to solve everything with pills’: medication use and identity among Mainland Puerto Ricans
Wallis E. Adams, Irina L. G. Todorova, Mariana T. Guzzardo, and Luis M. Falcón
Taking medications are complex symbolic acts, infused with diverse meanings regarding body and identity. This article focuses on the meanings of medications for older Puerto Ricans living on the United States mainland, a population experiencing stark health disparities. We aim to gain an understanding of the way multiple cultural and personal meanings of medications are related to and integrated in identity, and to understand how they are situated within Puerto Rican culture, history and circumstance on the US mainland. Data is drawn from thirty qualitative interviews, transcribed and translated, with older Puerto Ricans living on mainland United States. Thematic Analysis indicated four prevalent themes: embodiment of medication use; medications redefining self through the fabric of daily life; healthcare experience defined through medication; and medicine dividing the island and the mainland. While identity is impacted by experience of chronic illness, the experience of medication prescription and consumption is further related to the construction of the sense of self in distinct ways. For these individuals, medication use captures the dilemma of immigration. While cultural belonging and well-being remains on the island of Puerto Rico, the mainland hosts both easier access to and excess reliance on medication.
Medical constructions of long-term exhaustion, past and present (open access)
Olaug S. Lian and Hilde Bondevik
Culture and history affect the ways in which medical knowledge is shaped, sustained and changed. The less knowledge we have, the larger the space for the cultural imprint becomes. Based on these assumptions, we ask: how have medical constructions of long-term exhaustion changed over time, and how are changing constructions related to societal change? To discuss these questions we conducted a comparative study of medical texts from two historical periods: 1860–1930 and 1970–2013. Our data are limited to two diagnoses: neurasthenia and encephalomyelitis. After comparing the two periods by identifying diverging and converging aspects, we interpreted observed continuities and interruptions in relation to historical developments. We found that in the medical literature, long-term exhaustion became transformed from a somatic ailment bred by modern civilisation to a self-inflicted psychiatric ailment. At the same time, it changed from being a male-connoted high-status condition to a female-connoted low-status condition. We interpret these changes as contingent upon culturally available modes of interpretations. Medical knowledge thereby becomes infused with cultural norms and values which give them a distinct cultural bias. The historical controversies surrounding this medically contested condition neatly display the socially contingent factors that govern the social construction of medical knowledge.
Pathways to suicide attempts among male offenders: the role of agency
Richard Byng, Amanda Howerton, Christabel V. Owens, and John Campbell
Suicide is common among offenders, who are at increased risk of homelessness, unemployment and mental illness and are prone to impulsivity. Release from prison is a particularly vulnerable time. This qualitative study investigated the views of 35 offenders in South-West England prior to and after release from prison, enquiring into their previous suicide attempts and how they saw their future. Semi-structured interviews were analysed thematically, comparing individuals who had made one, more than one, and no suicide attempts. Multiple attempters were often in despair and enmeshed in substance misuse, with little control over their lives. Most of those with one-off or no previous attempts portrayed themselves as having more mastery. One-off attempters described using particularly violent means. The role of different types of agency in pathways to and from suicide is discussed. Iterational agency, the selective reactivation of past patterns of behaviour, appeared to dominate in individuals who were choosing between further suicide attempts and substance use. Projective agency, having a more future orientation, appeared more prominent in some single attempters and in those individuals with plans to escape crime and social exclusion.
Expanding the conceptual toolkit of organ gifting
Rhonda M. Shaw
In jurisdictions where the sale of body tissue and organs is illegal, organ transplantation is often spoken of as a gift of life. In the social sciences and bioethics this concept has been subject to critique over the course of the last two decades for failing to reflect the complexities of organ and tissue exchange. I suggest that a new ethical model of organ donation and transplantation is needed to capture the range of experiences in this domain. The proposed model is both analytical and empirically oriented, and draws on research findings linking a series of qualitative sociological studies undertaken in New Zealand between 2007 and 2013. The studies were based on document analysis, field notes and 127 semi-structured in-depth interviews with people from different cultural and constituent groups directly involved in organ transfer processes. The aim of the article is to contribute to sociological knowledge about organ exchange and to expand the conceptual toolkit of organ donation to include the unconditional gift, the gift relation, gift exchange, body project, and body work. The rationale for the proposed model is to provide an explanatory framework for organ donors and transplant recipients and to assist the development of ethical guidelines and health policy discourse.
The current issue of Social Theory & Health is a special double issue on theorizing health inequalities. Comprising eleven articles, the issue developed out developed out of a 2012 symposium held at the University of Edinburgh, entitled “Where Next for Health Inequalities?” As guest editors Katherine E. Smith and Ted Schrecker write in their introduction (the full text of which is freely available):
Lewin (1951, p. 169) famously reflected that there is ‘nothing more practical than a good theory’. Yet in health inequalities research, and public health more broadly, the number of theoretical contributions pales in comparison to the ever-growing number of empirical studies. It is certainly true that most of these empirical studies are informed by social theory in that many employ indicators of social categories that reflect theoretical ideas sketched out by Marx, Engels and Weber (see Kapilashrami et al and Scambler and Scambler, this issue) but these theoretical underpinnings are rarely acknowledged, interrogated or considered in any detail. Where theoretical frameworks have been applied to the study of health inequalities, this has often been with the purpose of trying to understand, or help analyse, pre-existing data sets or findings, rather than to inform decisions about how we study, and try to tackle, such inequalities or to develop theoretical approaches that are specifically intended to help us better understand health inequalities as a phenomenon. The collection of articles in this special issue is an attempt to begin redressing the empirical bias described here; to demonstrate some of the practical implications that social theories have to offer those seeking to better understand, and tackle, a social problem as complex and persistent as health inequalities; and to illustrate the indispensability of theory in generating new hypotheses for empirical research, both qualitative and quantitative.
An institutional theory of welfare state effects on the distribution of population health
Jason Beckfield, Clare Bambra, Terje A Eikemo, Tim Huijts, Courtney McNamara, and Claus Wendt
Social inequalities in health endure, but also vary, through space and time. Building on research that documents the durability and variability of health inequality, recent research has turned towards the welfare state as a major explanatory factor in the search for causes of health inequality. With the aims of (i) creating an organizing framework for this new scholarship, (ii) developing the fundamental-cause approach to social epidemiology and (iii) integrating insights from social stratification and health inequalities research, we propose an institutional theory of health inequalities. Our institutional theory conceptualizes the welfare state as an institutional arrangement – a set of ‘rules of the game’ – that distributes health. Drawing on the institutional turn in stratification scholarship, we identify four mechanisms that connect the welfare state to health inequalities by producing and modifying the effects of the social determinants of health. These mechanisms are: redistribution, compression, mediation and imbrication (or overlap). We describe how our framework organizes comparative research on the social determinants of health, and we identify new hypotheses our framework implies.
The insights provided by Gøsta Esping-Andersen’s Three Worlds of Welfare Capitalism on the origins and characteristics of social democratic, conservative and liberal welfare states make explicit many of the political and economic structures and processes that can impact on health and create health inequalities. Broad stroke analysis of welfare state differences indicates social democratic welfare states may fare better at promoting health and limiting health inequalities in specific instances. This article builds on Esping-Andersen’s insights to theorize how differences in sectoral power across and within forms of welfare states can shape the resources and supports available to those occupying various social locations during important periods of the life-course. It also specifies the specific health outcomes of special relevance to those situated in vulnerable social locations across the life-course.
Two decades of Neo-Marxist class analysis and health inequalities: A critical reconstruction (open access)
Carles Muntaner, Edwin Ng, Haejoo Chung, and Seth J. Prins
Most population health researchers conceptualize social class as a set of attributes and material conditions of life of individuals. The empiricist tradition of ‘class as an individual attribute’ equates class to an ‘observation’, precluding the investigation of unobservable social mechanisms. Another consequence of this view of social class is that it cannot be conceptualized, measured, or intervened upon at the meso- or macro levels, being reduced to a personal attribute. Thus, population health disciplines marginalize rich traditions in Marxist theory whereby ‘class’ is understood as a ‘hidden’ social mechanism such as exploitation. Yet Neo-Marxist social class has been used over the last two decades in population health research as a way of understanding how health inequalities are produced. The Neo-Marxist approach views social class in terms of class relations that give persons control over productive assets and the labour power of others (property and managerial relations). We critically appraise the contribution of the Neo-Marxist approach during the last two decades and suggest realist amendments to understand class effects on the social determinants of health and health outcomes. We argue that when social class is viewed as a social causal mechanism it can inform social change to reduce health inequalities.
What can health inequalities researchers learn from an intersectionality perspective? Understanding social dynamics with an inter-categorical approach?
Anuj Kapilashrami, Sarah Hill, and Nasar Meer
The concept of intersectionality was developed by social scientists seeking to analyse the multiple interacting influences of social location, identity and historical oppression. Despite broad take-up elsewhere, its application in public health remains underdeveloped. We consider how health inequalities research in the United Kingdom has predominantly taken class and later socioeconomic position as its key axis in a manner that tends to overlook other crucial dimensions. We especially focus on international research on ethnicity, gender and caste to argue that an intersectional perspective is relevant for health inequalities research because it compels researchers to move beyond (but not ignore) class and socioeconomic position in analysing the structural determinants of health. Drawing on these theoretical developments, we argue for an inter-categorical conceptualisation of social location that recognises differentiation without reifying social groupings – thus encouraging researchers to focus on social dynamics rather than social categories, recognising that experiences of advantage and disadvantage reflect the exercise of power across social institutions. Such an understanding may help address the historic tendency of health inequalities research to privilege methodological issues and consider different axes of inequality in isolation from one another, encouraging researchers to move beyond micro-level behaviours to consider the structural drivers of inequalities.
This article will explore the utility of Swidler’s concepts of cultured capacities and strategies of action in mapping the pathways through which area-based, multiple deprivation and inequality impact upon resources for health, health outcomes and health inequalities. It will be argued that these concepts have the potential to bring the collective and aggregated impacts of resource distribution to the fore in unpicking the processes through which area-based inequalities become manifest in health outcomes. This has the potential to illuminate the some of the economic, social and political processes though which neoliberalism has generated widening health inequalities in the United Kingdom. To that end, these concepts will be employed in a case study of the post-industrial town of Clydebank. It will consider the implications for population health of changes in: the amount and quality of employment on offer; the quality and affordability housing; and the accessibility of social and political resources for those who live in more deprived areas. Swidler’s concepts will be used to theoretically map the relationships between the growing wealth inequalities, widening place-based inequalities and increasing health inequalities observed over the past few decades in the United Kingdom.
Theorizing health inequalities: The untapped potential of dialectical critical realism
Graham Scambler and Sasha Scambler
We here extend our previous contributions to a neo-Marxist sociology of health inequalities via an engagement with Roy Bhaskar’s dialectical critical realism (DCR). We argue that Bhaskar’s re-grounding of the philosophies of Marx and Engels has the potential to re-invigorate sociology’s input into: (a) explanations of health inequalities and (b) interventions to reduce health inequalities. We also show that DCR provides rationale and opportunity for an action sociology beyond current professional, policy, critical and public sociologies. We briefly summarize current sociological models of health inequalities before protesting their lack of theoretical ambition. We then proffer a professional-cum-critical theory that emphasizes the continuing causal efficacy of social class in general, and of Britain’s ‘governing oligarchy’ in particular, for any credible sociological account of health inequalities. Bhaskar’s basic and dialectical critical realism are then introduced and the frame supplied by the latter commended for a deepening of the neo-Marxist theories of health inequalities being developed by us among others. The article concludes by drawing on this same frame to insist on a logical and moral commitment to an action sociology beyond any institutional constraints faced by practitioners of the discipline.
It is now widely accepted that health inequalities are directly linked to inequalities in power and material resources. Reflecting this, persuasive accounts of both the production of health inequalities and the failure of high-income countries to reduce these inequalities have been underpinned by references to structural (particularly neo-Marxist) theories of power. Such accounts highlight the importance of macro-level political and economic policies for health outcomes and, in particular, the unequally damaging impacts of policy reforms collectively referred to as ‘neo-liberal’. This article draws on interviews with researchers, civil servants, politicians, documentary makers and journalists (all of whom have undertaken work concerning health inequalities) to examine what these conversations reveal about these actors’ perceptions of, and responses to, the political context of health inequalities in the United Kingdom. In so doing, it illustrates the fluid and networked nature of political ‘power’ and ‘context’, findings that point to the potential utility of post-structural theories of power. This article argues that, if conceived of in ways that do not deny power differentials, post-structural theories can help: (i) call attention to ‘neo-liberal’ inconsistencies and (ii) explain how and why individuals who are critical of dominant policy approaches nonetheless appear to participate in their ongoing production.
Social theory and health inequalities: Critical realism and a transformative activist stance?
Chik Collins, Marjorie McCrory, Mhairi Mackenzie, and Gerry McCartney
The failure successfully to project evidence on health inequalities into the policy imagination is likely related to the fact that the research community is yet to provide an appropriate critical theory of health determination – integrating different social phenomena through identifiable mechanisms and pathways across different levels and scales, and opening up a realistic perspective on how unjust outcomes might be subject to change. On what social-theoretical basis might this task most usefully be addressed? This article critically explores the utility of the work of Archer which has been applied to health inequalities by Scambler, and argues that it is quite problematic in relation to the task of theorising health inequalities. It then proceeds to explore the relevance of a longer-standing tradition of work deriving from the early twentieth century Soviet school of ‘psychology’ led by Lev Vygotsky and coalescing today under the heading of Cultural-Historical Activity Theory. Within this tradition, we highlight the particular contribution of Anna Stetsenko. We argue that this tradition, and the contribution of Stetsenko in particular, merits our close attention in developing a basis for a more expansive critical theory of health.
Theorising participatory practice and alienation in health research: A materialist approach
Claire Blencowe, Julian Brigstocke, and Tehseen Noorani
Health inequalities research has shown a growing interest in participatory ways of working. However, the theoretical ideas underpinning mainstream approaches to participation remain underexplored. This article contributes to theorising participatory practice for the kind of egalitarian politics to which many of those focused on reducing health inequalities are committed. First, we argue that the ambitions of participatory practice should be concentrated on ‘overcoming alienation’, rather than ‘attaining freedom from power’. An over-emphasis on negative freedom may help to explain a worrying confluence between participatory democracy and neo-liberal marketization agendas – we look instead to traditions of participatory practice that emphasize positive freedom and capacities for collaboration. Second, we discuss some such perspectives though consideration of critical pedagogy, but highlighting the role of materialised relations of authority, spaces, objects and encounters. Third, we explore the relationship between objectivity and alienation, arguing that participatory politics, against alienation, can look to reclaim objectivity for participatory, lively, practice. We then seek to show that participatory practice can play a role in creating common knowledge and culture, and in fostering a sense of public ownership over objective knowledge and institutions concerned with health. We conclude by asking what this looks like in practice, drawing some ‘rules of thumb’ for participatory practice in health inequalities research from existing inspiring examples.
Fantasy paradigms of health inequalities: Utopian thinking?
Alex Scott-Samuel and Katherine Elizabeth Smith
This article argues that, while it can be politically expedient for governments to engage with health inequalities, they cannot, within the confines of neo-liberalism, realistically propose actions that evidence suggests will effectively reduce them – such as tackling power inequalities, social status and connections or class inequality. Indeed, a dominant ‘policy paradigm’ prioritising economic growth restricts the ability of policy actors to imagine alternative, more equitable scenarios. In this context, some policy actors and researchers have devised a parallel fantasy world in which proximal, downstream, easily tackled exposures are posited as potential solutions to health inequalities. The consequence of this is a widespread public sector culture in which well-meaning policymakers, practitioners, researchers and members of the public collude in sustaining a ‘cargo cult’ of health behaviourism. In examining this situation, we draw on accounts and critiques of utopian thinking to help explain: (i) the remarkable persistence of policy proposals to tackle health inequalities via downstream interventions, in spite of the strength of evidence challenging such approaches; and (ii) the limited extent to which more upstream proposals inform policy debates. We argue Ruth Levitas’ notion of ‘utopia as method’ offers an imaginative and potentially useful avenue for future health inequalities research.
Health justice after the social determinants of health revolution
Daniel M. Weinstock
Social Determinants of Health (SDH) theorists claim that the distribution of social goods such as income, housing and education, has as great or greater an impact on health outcome than does health care, narrowly construed. This article attempts to integrate this claim into a plausible theory of justice. I argue that such a theory must be both political, in that it focuses on goods that states can distribute or regulate effectively and appropriately, and holistic, in that it must integrate the various values that are relevant to distribution into a plausible overall theory. While SDH-based theories are appropriately political, many of their exponents tend to undertake the task of integration in an implausibly monistic manner. I argue that monists about health are caught between the horns of an unattractive dilemma: either they employ a narrow conception of health, in which case their prescriptions are grounded in an implausible conception of the human good, and give rise to an extreme form of paternalism; or they use a broader conception of health, which leads them to address the challenge of holism in a purely rhetorical manner. I argue for a pluralistic mode of integration, one that accepts that social goods are regulated by both consequentialist and non-consequentialist considerations, and that the range of consequences that are relevant do not relate merely to health.
These days, it is fun to “hack” almost everything. You can hack your life, you can hack your home, and you can even hack your period. So, as the web continues to grow more material on synthetic biology, let us turn once again to the world of biohacking.
A particularly interesting piece considers the possibility of Open Source Insulin. Insulin, like any bio-commercial product, can be simultaneously life-saving and expensive. For those people who can’t make their own (with an embedded pancreas), why not homebrew? You could also inject your eyeballs with a kind of chlorophyll analog called Chlorin e6 in order to improve your night vision, hack your ears to hear Wi-Fi, or extract DNA from some strawberries. (Just don’t forget to kill your adorable little abominations before you pour them down the drain.)
The application of the Open Source movement to biology is another way in which technologies and bodies can intertwine, touching on the tensions between private property (both patents and selves) and science as an aspirational public good. For the moment, we can find an open source language for programming cells, the BioBricks Foundation, Open Wetware, and physical spaces for workshops and experiments, like Genspace.
But, you may ask, is biohacking really a thing? It’s not like you can get a home CRISPR machine – at least, not quite yet. (For a fun if slightly noisy overview of CRISPR, listen to science reporter Carl Zimmer on Radiolab: “Of CRISPR and dragons”). But even without a kitchen-counter gene-editing appliance to slide in next to your bread machine, CRISPR technology leaves us with plenty to discuss. For example, scientists in China have successfully modified human embryos, which has spawned many discussions about the ethics of human germline modification, and what this all means for the future.
Editing humanity is a topic full of fear and promise. Gene editing holds the potential for innovation in treatment of many diseases, particularly cancer. (And there are also some odd proposals, even accounting for good intentions.) The invocation of dragons may be a subtle reference to the location of this research in China. But at the same time, like the dinosaur parade of the “Jurassic” franchise, Dragons serve as a broader metaphor for the dangers of meddling with nature. The Radiolab piece expresses it like this (excerpted from minutes 21-23):
Voice 1: “I don’t know if it’s a religious thought or just the thought of a conservative person, but … I don’t know where the sacred begins and ends anymore, on that particular turf… As the human beings get more and more power to create and design and essentially create a future, that future will include the imaginations both light and dark of humans… [I don’t think we should outlaw it], I think we should cringe a little as opposed to having a big party.”…
Voice 2: “OK, let’s all cringe… ready…”
Voice 1: “You cringed with attitude!”
Voice 2: “But you’re afraid of, like, dragons!” [laughter]
Of course, this dragon metaphor is not new. Medieval manuscripts were known to “make explicit the connection between the dragon and the devil, aligning the fantastical creature with evil, deception, ‘vainglory and human pleasures.’” The dragon is also very much like the Beast of the Apocalypse, often depicted with an array of multiple and and often multi-species heads, like this one described at the British Library, or this one. There can be overlap between the whimsical and the satanic.
Putting the “Play” back into “Playing God”?
The shifting divisions between nature, the sacred, and the abomination have often been explored through art. As an emergent art form, BioArt explores this interstitial space, reaching into Biodesign and Molecular Cuisine. There is even a Federation of American Societies for Experimental Biology BioArt contest.
Intersections of science and religion tend to appear here as well. For yet another perspective, see “Why I Became a Christian Transhumanist.” There is the saying that the road to hell is paved with good intentions. Or is it actually a mouth with a flaming cauldron (complete with goat-men and a bird-headed creature with an additional posterior face stoking the fire with bellows)? Maybe there is more than one way to get to hell.
- What is biohacking and why should we care?
- Where will synthetic biology lead us? (first mentioned in Somatosphere way back when)
- Read about A Million Core Silicon Brain at MindHacks.
- Every Virus a Person Has Had Can Be Seen in a Drop of Blood
- Are you interested in ancient DNA? Sure you are.
- I’m still trying out collecting links at delicious.com @smbergst #Biohack
“Is writing seemly? Does the writer cut a respectable figure? Is it proper to write? Is it done?”
- Jacques Derrida, “Plato’s Pharmacy” in Disseminations
~ ~ ~
“I choose… Estrella. Yes, you can call me Estrella when you write.”
“Are you sure?” I asked.
Estrella nodded her head, a wisp of dyed honey-blonde hair coming loose from behind her ear. Her long earrings, the gold paint flaking around a plastic ruby, swayed back and forth as she nodded in affirmation. Yes, she was sure.
“You can write if you want,” Estrella gestures to my notebook that sits on the table. I write instead on a napkin. It feels less official and thus less obtrusive. “Unless you prefer napkins… This is what you call anthropology?” She laughs and pats my hand, pen frozen on the flimsy paper.
I look at my scrawl on the napkin. I have written the date, her chosen pseudonym, and the location of the café where we sit. “Yes,” I tell her. This is what I call my anthropological practice of ethnography. I bring out my field notebook, already swollen with the additions of drawings and pressed plants that women have given me. The drawings are the result of trying to keep sex workers’ children occupied while I talk with their mothers, which at times becomes a baby-sitting arrangement if a client interrupts our conversation. Estrella leafs through these. She has several children of her own, but they live with her mother in another part of Peru. That childhood home is far from her adopted one, which is a place of work in the prostíbars (brothels) of the Peruvian Amazon’s region of Madre de Dios (Mother of God).
“Do you always ask people what name they want to use?” She wanted to know.
At the time of this initial dialogue with Estrella in 2011, this was true. But ideas and ethnographic practices change with the dynamism of everyday life. I offer this participatory process of “choosing names” as an ethnographic case, one way that ethnographers can serve to further the trust of people whose lives and stories we analyze. My fieldwork, which had begun in 2010, examined three modes of “traffic”: in women destined for the sex-trade, plants studied by pharmaceutical companies for reproductive health, and gold, made solid via liquid mercury along Latin America’s Interoceanic Road. I traveled the 3500-mile road from the Brazilian Atlantic to the Peruvian Pacific coast, traversing the Brazilian, Peruvian, and Bolivian Amazon. From rainforest to laboratory, from brothel to bank, “traffic” functioned as my analytic to examine physical encounters and collisions as well as entwined questions of the dynamic value of people and things traveling across borders and through global commodity-chains.
The gold mining, which fueled interdependent economies, had its greatest concentration in Madre de Dios where I first met Estrella. Situated near the borders of Brazil and Bolivia, Madre de Dios had earned the nickname “El Wild Wild West” for the implosion of lawlessness and prostitution reminiscent of the North American gold rush. The fall of the U.S. dollar and the rise of the price of gold had coincided with the construction of the Interoceanic Road, which was the first paved thoroughfare in the region (marked in black on the above map). Where artisanal mining had previously meant backbreaking work for little return, the price was now right for a livable wage. Male miners from Brazil, Bolivia, and Peru streamed into the rainforest mines. Female sex-workers hailed from these countries, in addition to Colombia and Ecuador. During my two years conducting research along the Interoceanic Road (2010-2012), I would ask miners and sex-workers, along with environmental engineers, biologists, indigenous leaders, and government officials, what name they would like me to use when I wrote.
Government officials almost entirely chose their own names for accounts written about them. Sex-workers already operated under a host of fake names to protect themselves and their families from embarrassment and, in some cases, violence from clients and police (who were often one-and-the-same). Miners similarly conducted their operations illicitly. They did not employ their legal names (if they had a national identity card from Peru or a neighboring country) – not among one another in the mines, not with the environmental engineers who tried in vain to regulate the proliferating artisanal application of liquid mercury in the mines, and certainly not with me. I asked people how they would like to be “named” because people’s words have a different quality when their narratives become legible as a creative process and practice of co-authorship.
Despite my desire to make my ethnographic fieldwork as interactive as possible, I soon realized that I could not always uphold a practice of inviting people to choose without any intervention on my part. As I became more ensconced in fieldwork, I realized the high stakes in employing people’s legal names, even if they wanted me to do so. When it came to writing about indigenous activists, I did not always feel comfortable honoring a person’s request to employ their full and legal names. Gaining one’s identity card and displaying nametags has become a proud gesture for people – indigenous or not (and that category of the person also goes up for debate) – so often ignored by the State. This process echoes Marcel Mauss’s notion that having a name forms a critical step in taking on an identity as a person (Mauss 1985). Yet while indigenous activists may have felt confident in their personhood and in asking me to use their full names, environmental activists, particularly indigenous ones, represent easy assassination targets for disgruntled loggers, oil speculators, miners, and drug traffickers. Naming people in full might not only undermine their efforts, it might also put their lives in danger.
Sex-workers, unlike indigenous activists, did not tell me their real names and I did not ask for them, knowing that they protected their own identities from their customers as well. I may never have learned Estrella’s real name had a competing exotic dancer not stolen it. “Véronica” became the first person that selected a pseudonym that I refused to employ on ethical grounds. Véronica knew Estrella’s full legal name and had taken it to represent her exotic dancing persona. This meant that she exposed Estrella to social harassment at best and to police violence at worst. Most worrisome for Estrella, however, was that in the event of a police raid, the news media – armed with video cameras – would take footage and reveal her identity. Family members did not know about her line of work, and Estrella feared that they would find out. She hid under the beams of police searchlights and news cameras as best she could. It was she who pointed out to me some of the similarities and differences between sex-workers and indigenous activists. “We are both trying to stay alive. The government needs us but also hates us. They will stand and show face, but we do not.” Estrella’s comment that the government both needed and hated sex-workers and indigenous activists came from her observation that both were necessary for a strong tourist industry. But both were too often found floating dead downriver.
In November 2014, just as Peru prepared to hold climate talks in Lima, four indigenous activists died when illegal loggers attacked them. Death threats had become a common way of life for activists and leaders at the indigenous federation of Madre de Dios (Federación Nativa del Rio Madre de Dios y sus Afluents – FENAMAD). Hunt Oil, the powerful petroleum conglomerate, began its drilling in 2006. It’s not clear whether the Peruvian army, police officers, company cronies, or all of them together physically attacked protesting indigenous groups. The Peruvian government renewed the nine-year contract with Hunt Oil for another three years, without consultation with the indigenous communities living on the land under extraction (FENAMAD). With oil and gold ever more extractable, and with growing infrastructure, people and information traveled faster than they had along rivers when I first arrived in 2010. I now constantly question how quickly – or slowly – my own words and naming practices might also travel.
This might not have been a necessary concern had my fieldwork not come to an abrupt and undesired end in March of 2012 when a gold mining strike in Madre de Dios turned bloody. The Peruvian government sent its army to pacify protesting miners, joined by the indigenous federation of Madre de Dios. An estimated 15,000 gold miners went on strike to continue working, demanding an alleviation of environmental regulations. Several thousand sex-workers joined them. The indigenous federation, misjudging the political climate, walked with the gold miners in hopes of entering negotiations with the State over land claims. The plan backfired. The Peruvian media painted the indigenous federation as betraying the earth by making an alliance with the gold miners. Already targets if they did not cooperate with marauding loggers and miners, Amazonian activists once again became the focus of the Peruvian government’s “extraction” efforts (large-scale protests in 2009 along the InterAmazonian Highway had also turned bloody). The choice of the word “extraction,” as Peruvian secret servicemen explained to me while asking me to provide names and information to help them, was a euphemism for “extermination.”
Forced to leave and worried that I would endanger people who had trusted me with their words, I set about destroying identifying data. Without a strong Internet connection to digitally save interviews, everything went onto a small external hard-drive. This ended up pressed between my skin and the elastic of my clothing. I jammed the RAM on my computer so that it would not turn on anymore. I explained to the government agents going through my bags that the rainforest humidity, former ethnographic foe-turned-friend, had destroyed my digitized data.
Making ethical decisions about how to protect the people that anthropologists work with during ethnographic fieldwork is, as Paul Stoller notes, “a very messy business.” The debates surrounding Alice Goffman’s book, On the Run, have helped to crystalize a difference between journalists and ethnographers: whereas journalists must check their facts, the very concept of a fact and what constitutes truth have becomes part of a critical inquiry for social scientists. Ethnography is not about “fact-checking,” Stoller notes, but rather a weaving of personal and professional interactions into fruitful, if not fruitfully frustrating, entanglements. Acknowledging the precariousness of other people’s lives, a precariousness that the writer often does not share, may mean blending the “facts” to protect people’s identities.
The theoretical ground as well as the lived terrain surrounding Goffman’s use of anonymity has incited continuing debates that dance around the issue of race. While I find the critiques from journalists on this question of fact-checking easily addressable, the dynamics and ethics of race, and of what it means for a white social scientist to do an ethnography in/of an African-American community, merit further thought. Whether one agrees or not with Goffman’s fieldwork location and subsequent analysis, I do advocate for the care that she took to blur details, places, and events. She gave pseudonyms to protect – which I gather was also done out of respect – for the people who shared their lives with her.
These swirling debates around Goffman have given me pause to reflect on Derrida’s questions that I pose at the beginning of this piece. “Is writing seemly? Does the writer cut a respectable figure? Is it proper to write? Is it done?” I brought these questions with me into (and out of) the field because they not only urge me to consider my whiteness and privilege when I write, but also how I write. The attempt to collaborate in the choosing of pseudonyms is one way that I attempt to answer the questions of what it means for the writer to cut a respectable figure when analyzing the lives of others. Paulo Freire, Brazil’s revolutionary thinker and writer, espoused a pedagogy that was a “naming” of the world, engaging in a dialogue with others. “If it is in speaking their word that people, by naming the world, transform it, dialogue imposes itself as the way by which they achieve significance as human beings” (Freire 1970: 88). This resonates with Mauss’s assertion that to become a person, one must first have a name. Freire’s formulation, however, goes one step further in highlighting (as he does throughout Pedagogy of the Oppressed) human relationality, how we bring one another into existence through naming practices. For Franz Fanon, being called a name other than one’s own creates a severe sense of trauma and alienation from one’s self (Fanon 1967).
This is why inviting people to participate in their pseudo-naming, and telling them why I may not be able to honor their requests, meant something more important than “fact-checking.” It meant explaining to Véronica, who had stolen Estrella’s true name for her nightly activities, why I would not do as she wished. This did not provoke a positive response from Véronica, but it did mean that trust with Estrella and her network of sex-workers deepened. This in turn enriched my connections with them. Mauss’s concluding words, after considering whether the stable category of the person and naming might someday fade away, brings my own ethnographic case to a close: “Let us labor to demonstrate how we must become aware of ourselves, in order to perfect our thought and to express it better” (Mauss 1985: 23). That strikes me as a seemly and respectable answer to my own questions of how writing might be done.
This piece is dedicated to Jorge Payaba and his sister, Juana Payaba, indigenous activists in Madre de Dios.
Ruth Goldstein, PhD is a medical anthropologist in the Anthropology Department at the University of California, Berkeley. Her research stems from over ten years of examining human rights and environmental issues, with a particular focus on gender-based violence and women’s reproductive health. She can be reached at email@example.com.
FENEMAD. Gobierno amplía por tres años contrato de licencia a Hunt Oil para explorar Lote 76, Noticias Fenamad, August 5, 2015. http://www.fenamad.org.pe/noticias/gobierno-amplia-por-tres-anos-contrato-de-licencia-a-hunt-oil-para-explorar-lote-76/
Derrida, Jacques. Disseminations. Barbara Johnson, trans. New York: Athlone Press, 1981, p. 74.
Fanon, Franz. Black Skin, White Masks. New York: Grove Press, 1967 .
Freire, Paulo. Pedagogy of the Oppressed. Myra Bergman Ramos, trans. New York and London: Bloomsbury Academic, 2000 .
Mauss, Marcel. “A category of the human mind: the notion of person; the notion of self.” Translated by W.D. Halls. In The Category of the Person: Anthropology, Philosophy, History. Edited by M. Carrithers, S. Collins, and S. Lukes, pp: 1-23. Cambridge; New York: Cambridge University Press, 1985.
Stoller, Paul. “Alice Goffman and the Future of Ethnography.” Huffington Post, June 15, 2015.
Stoller, Paul. “In Defense of Ethnography.” Huffington Post, August 24, 2015.
Watts, Jonathan. “Spotlight on murders of activists as Peru prepares for Lima climate talks.” The Guardian, November 17, 2014.
Soros, Alex. “Local activists are paying with their life to protect their forests in Peru.” The Guardian, November 17, 2014.