Tobias Rees’s Plastic Reason: An Anthropology of Brain Science in Embryogenetic Terms by Nima Bassiri
by Tobias Rees
University of California Press, 2016, 352 pages
In the prefatory pages of Plastic Reason, Tobias Rees explains that his ethnographic study of the lab of French biologist Alain Prochiantz — one of the earliest proponents, technicians, and conceptual architects of neuronal plasticity — is ultimately “about the emergence of possibilities where before there were none” (xiii). If we are to appreciate the conceptual transformation in neuronal research that took place in France and specifically in Prochiantz’s lab in the late 1990s, Rees insists that we must view this development not only as the formation of a new style of neuroscientific thinking but also as the emergence of an entirely new object. Rees writes, “Within the roughly one hundred years I cover here (from the 1890s to the 1990s), what the brain is changed many times over. […] Conceptually speaking, each one of these changes mutated what the brain is, and each mutation changed, however slightly, the analytic focus of the neuronal sciences” (89). Plastic Reason, then, has a double focus: on the one hand to narrate and rationalize the emergence of Prochiantz’s specific doctrine of neuronal plasticity and, on the other hand, to take stock of the very object that emerged, “the enactment of a brain that is neither a fixed chemical machine nor an already wired computer, but instead a living organ characterized by ceaseless cellular becoming” (195).
Central for Rees is the claim that Prochiantz’s specific conception of plasticity — namely, neuro-cellular embryogenesis that continues into adulthood — was radically different from, and effectively sought to dethrone, the preceding dominant view of plasticity defined by synaptic rewiring. This is the point that remains central for Rees: the most basic material assumptions of the brain were being challenged; plasticity did not simply refer to (synaptic) variability against the backdrop of (neuronal) fixity but, as far as Prochiantz was concerned, brain matter was itself an inexhaustible transformation. “For Alain [Prochiantz] and his colleagues … neuronal growth, whether of new neurons or of the fine structure, occurred throughout life. […] [T]he brain was never actually fully developed” (215). Rees argues that for Prochiantz the brain is not merely a machine that reconfigures itself but an always-developing organ, a process of constant self-differentiation.
Plastic Reason is organized into chapters that offer a variety of entry points into Prochiantz’s lab. Together they comprise an ethnographic assemblage that collectively illuminates the combined historical, sociological, theoretical, experimental, and ethical stakes of the research. While each chapter attempts to reckon on its own with the novelty of this emerging account of the brain, they are all also focalized around a fairly specific technical inquiry: can homeoproteins in the brain continue to transfer between cells, thereby maintaining an embryogenetic function, at a neuro-cellular level, into adulthood? To ask whether cellular development continues into adulthood is effectively to wonder whether the human being is always in a state of perpetual neuronal development, never fully nor finally formed.
Yet what Rees recounts is less the technical struggle in experimentally confirming homeoprotein transfer but rather the very difficulty in proposing the possibility of continued developmental activity in adult brains, precisely because this hypothesis flew in the face of the dominant rationality of institutional brain research. Prochiantz’s plasticity “undermined the old comprehension of what the brain ‘is’ (an immutable structure) and how one has to study it (as a neurochemical machine with the synapse as the only dynamic element)” (50). So Plastic Reason is as much a study about the emergence of a new brain-object as it is an examination of French academia and the forces that arbitrate the boundaries between marginal knowledge claims and scientific authority. Prochiantz, a rising star in his early career, became an academic pariah during the 1990s when he began promulgating his unpopular theory of neuro-cellular plasticity, viewed by many of his colleagues as either experimentally baseless, scientifically peripheral, or institutionally unpractical. His lab shrank in size and funding, while his notoriety grew as an anomalous figure who drew more from his relations with French artists than with his fellow scientists. Rees charts Prochiantz’s professional development, however, in order to demonstrate the suppleness of social or “relational” networks and the ways in which these complex and morphing sociological constellations function as webs upon which certain epistemic possibilities, over others, come to be affixed. It was not until the late 1990s and early 2000s, with the experimental confirmation of adult neurogenesis in labs in the United States, that Prochiantz’s work was vindicated. Indeed, in 2006, he was elected professor at the Collège de France.
And so, in this regard, Plastic Reason is perhaps most critically a meditation on the very nature of scientific knowledge production. How can a practitioner enact and animate a scientific possibility as such where no such possibility yet exists? Should we view this reckoning with the impossible as epistemologically different from, say, the composition of a new scientific theory or the constitution of an innovative experimental object? As Rees suggests, the greatest challenge for Prochiantz did not take place in the lab but in his attempt to overcome a historico-conceptual hurdle — a century-long supposition embedded into the very fabric of neuroscientific reasoning that, in whatever way the brain might be imagined, it would always be imagined as an invariably static object, neuronally fixed and materially immutable. What recourse can scientists have when they seek to press against the very limits of what is institutionally acceptable or conceptually permissible? Experimental results alone may not, Rees suggests, contain the veridical force necessary to transform a premise roundly rejected as impossible into a premise generally accepted as true.
Prochiantz’s course of action was to grapple directly with the presumed impossibility of adult cellular neuroplasticity. This direct confrontation meant adopting a different sort of epistemic labor, a manner of thinking that Prochiantz casually described, what Rees formally labels, a “nocturnal” approach to scientific inquiry. For Rees, Prochiantz’s “nocturnal” labors, which subtended his scientifically standard bench research, comprised a willingness to engage in high speculation and to follow creative intuitions down whatever paths they might lead. In abstract terms, this meant an attempt “to open a not yet existing conceptual horizon,” to “[think] the yet unthought” (138), to consider “the possibility that things could be different from the way they were currently imagined to be” (102). Somewhat more concretely, Rees documents Prochiantz’s inclination to situate speculative endeavors at the forefront of his research, to engage in a kind of epistemic experimentation, a philosophical poeticism, that relied on intuition, contingency, and association.
The most notable instantiation of Prochiantz’s nocturnal practice involved a kind of genealogical work, a perhaps unexpected activity for a contemporary neuroscientist. Prochiantz confronted the history of biology, reading and rereading the works of embryologists, anatomists, anthropologists, evolutionary biologists — figures as diverse as Claude Bernard, Alan Turing, D’Arcy Thompson (the list is rather long, actually). Prochiantz engaged in this history precisely in order to understand how these former innovators altered the terms of biological research and how they themselves advanced scientific possibilities that were not previously imaginable. Yet Prochiantz’s historical submergences and reconstructions were intentionally unfocused, trans-disciplinary, and almost capricious. As Rees explains, Prochiantz brought “authors together and [treated] them as if they were in a steady conversation, even though they were not” (134).
Yet as Rees reconstructs Prochiantz’s reading list, what emerges is a veritable archive — not a linear or obvious development of theories of the brain’s flexibility but, rather, an unexpected genealogy of the plastic. What holds this archive together, however, is Prochiantz himself — his unruly interpretations and surprising expropriations; it is a genealogy of neuro-cellular plasticity that Prochiantz simultaneously constitutes and creatively re-reads. Over and against the historically entrenched supposition that the brain is (and must remain) neuronal fixed, the hurdle that vocally proclaimed the very thought of adult cellular neurogenesis to be impossible, Prochiantz sutured together a new condition of possibilities on which his own hypothesis and experimental results could find sure footing, historically and conceptually. Rees insists that for Prochiantz, biological matter is a process, a performance, a becoming; this is an observation that Prochiantz can make about the brain by reading from an archive of scientists that never really discuss the brain at all. For Prochiantz, nocturnal work is a productive and insight-inducing recklessness of thought that actively pushes against the limits of scientific possibilities.
Rees seems to imply that the most creative scientists are simultaneously nocturnal epistemologists of sorts. They are not simply capable of gleaning scientific ruptures of the past but, insofar as they can glean those ruptures, they are inventively inclined to institute ruptures of their own. Prochiantz was cautious not to consider the plastic brain to be a simple exchange of one stable neuroscientific paradigm with another. Rees recounts Prochiantz’s continued assertions — fervent and in some cases almost frenzied — that if the plastic brain were to truly be understood as perennially developing, then it must altogether belie the promise of fixity. The plastic brain is fundamentally transforming; it is unstable and “incoherent.” And so must be the science that studies it. This is perhaps the subtlest and most provocative of Rees’s underlying claims — a brain defined by embryogenetic incoherence can only be encapsulated by a transformational rationality, a plastic reason.
One of the most compelling chapters in Plastic Reason is the last one, organized around the question of ethics. Rees asks, “What venues for living a life, for being neurologically human, have the neuronal sciences opened up since 1891” (198). Rees presents a comparative reading of the ethical possibilities that have inhered in neuronal doctrines since the late nineteenth century in an effort to see what new modalities of ethical self-fashioning are made available in Prochiantz’s account of neuro-cellular plasticity. As Rees explains, the ethical implications of the plastic brain are brought into focus when we consider “the particular ethical space a given neuronal conception of the brain provides for being human” as well as what “unique ethical equipment for living a life it provides to all those who life their life, deliberately or not, as brains” (197). Rees suggests that plasticity offers a kind of ethical promise in its repudiation of biological fixity that no previous neuronal doctrine was able to provide. With plasticity, the human itself can now be conceptualized “from the vantage point of a brain believed to continuously change, to undergo ceaseless morphogenetic transformations” (217). The fundamental attribute of a “neurological human” defined by plasticity is precisely “openness, its openness toward the future, its capacity for ongoing adaptation” (217).
Rees’s assertions in this final chapter are both exciting and admirable, given that they are organized around the urgency to consider what ethico-political possibilities can be unearthed from neuroscientific research. And yet it is precisely this analytic unearthing that some readers might find slightly strained. Rees offers a serial examination of major neuronal paradigms through textual readings of their central physiological suppositions from which he draws out their various ethical possibilities. But in some cases, Rees’s work of unearthing underlying ethical commitments feels closer to a quick and potentially injudicious extraction of sorts. It raises, perhaps inadvertently, an important question for scholars interested in confronting the boundaries between the science and ethics: how reliably can ethical paradigms be drawn out of discursive systems that are not formalized as ethico-political utterances? How viably can scientific propositions, on their own, be translated into ethical claims?
Translational scholarship that seeks to excavate the ethical possibilities of scientific research risks overlooking the ethical and political constraints that scientific doctrines actually afford. Ethical realities inhere in science not just in terms of the possibilities that are theoretically capable of being abstracted from them but because scientific research is ultimately embedded within larger institutional frameworks, power structures, and discursive matrices. There is no doubt that ethical and political norms circulate throughout the brain sciences. These norms in part fashion what researchers, expert readers, lay audiences, experimental subjects, and “neurological humans” will count as acceptable or obligatory. These norms usually determine (regulate, but not necessarily foreclose) what will be ethically available and accessible in the first instance, and they do so through the complexity of institutional, administrative, and discursive effects they have on subjects. This process of normative fashioning is obscured if we immediately and precipitously convert a physiological utterance into an ethical proposition; whatever ethical possibilities neuroplasticity may promise, what it will actually afford once it is fully stabilized as a dominant tenet in neuroscientific research and brain medicine is far from clear.
Rees ultimately characterizes his analysis in this final chapter as a “genealogy of morals,” a way of clarifying the ethical stakes of Prochiantz’s account of neuroplasticity by marking out its historical difference with prior neuronal theories. While he is never explicit about it, Rees does play favorites. Intrinsic value is attributed to the “openness” and transformative potentials of plasticity over the immovably static and mechanical determinations of the fixed brain. Openness is valuable; fixity is not. This is neither unexpected nor reproachable, but it does raise a question of what initially justifies these valuations. In a genuinely Nietzschean fashion, can we not ask: What is the value of these values? Why would any scholar — an anthropologist, a literary theorist, a philosopher — tend to value openness over fixity today? Undoubtedly, someone who defines herself according to her brain may have at her disposal the tools necessary to conceive of herself as transformative and capable of “ongoing adaptation.” But into whom will she, or is she being asked, to transform? What imperatives of adaptation, malleability, and adjustment are being forced upon her? When does openness to the future simply become pliability and compliance — and how can one resist such an appropriation?
These are the sorts of questions that warrant a degree of caution against immediately allying privileged biological concepts with ethico-political categories — that is, in transmuting the transformative openness of biological adaptation into a theory of human liberty. Rees, for his part, resists the urge to link plasticity to freedom, subtly criticizing the facile ways in which advocates of the older model of synaptic plasticity grounded liberty on the brain’s capacity to rewire itself. Indeed, Rees’s chapter on ethics is less an argument than an inquiring: what ethical possibilities can plasticity provide for the neurological human? Here I am reminded of an almost passing footnote Emmanuel Levinas makes in Otherwise than Being (1974): “The body is neither the obstacle that opposes the soul, nor the tomb that imprisons it, but that by which the self is susceptibility itself. The extreme passivity of ‘incarnation’ is to be exposed to sickness, to suffering, to death, it is to be exposed to compassion and, as self, to the gift that costs.” Is it disagreeable to substitute “brain” for “body,” to read “neurological human” where Levinas writes “incarnate subject?” If not, then perhaps the openness at the heart of Prochiantz’s cellular neurogenesis is not an engine of overcoming, but an expression of exposure and vulnerability, an original passivity that could ultimately signal a fundamental responsibility before any kind engagement with liberty. Whether the inevitable stabilization of neuroplasticity within the institution of brain research and biomedicine will make such possibilities available for future neurological humans is perhaps the issue that remains most open of all. These final concerns are not rebukes but merely examples of the rewarding interchanges that Plastic Reason facilitates. It remains a compelling ethnographic study of a major upheaval in brain research and a provocative engagement with the nature of scientific knowledge production.
Nima Bassiri is Collegiate Assistant Professor of Humanities at the University of Chicago. His current research focuses on the role neurological discourse has played in the historical and conceptual refashioning of the self throughout the nineteenth century, particularly in terms of how it augmented and transformed earlier, classical conceptions of personal identity.
 Emmanuel Levinas, Otherwise than Being or Beyond Essence, trans. Alphonso Lingis (Duquesne University Press, 2002), 195 n. 12 (translation modified). Emmanuel Levinas, Autrement qu’être ou au-delà de l’essence (Martinus Nijhoff, 1974), 139 n. 12.
Check out the first instalment of this month’s In the Journals!
The field of Global Mental Health has very quickly engendered a new institutional and research landscape, having recently established a number of its own research centres and training programmes. Under the banner of this field, there has also been an explosion of international research programmes and interventions which have received significant financial backing from a range of international donors, development agencies, and governments.1 In sum, Global Mental Health has increasingly captured the imagination of a wide range of stakeholders and has made major strides in establishing mental health as a priority within the global health arena. Indeed, a recent Google search for ‘Global Mental Health’ on 1 November 2009 identified approximately 62,300 related sites, of which over 85% of them were registered since 2008 (Patel & Prince,2010). This increasingly powerful field has, however, also elicited a range of critical responses, with growing controversy over its conceptualisations, goals and imagined outcomes (Campbell & Burgess, 2012; Kirmayer & Pedersen, 2014; Mills & Fernando, 2014).
Valerie Webber, Janet Bartlett & Fern Brunger
HIV and hepatitis B and C are viruses that have been unduly set apart from other infectious diseases in terms of the symbolic pull they exert and the anxiety they produce. This is reflected in health care policy and protocol. Hospitals, health care regions and colleges of physicians and surgeons create guidelines and procedures that single out HIV or hepatitis B and C as requiring special attention. This paper examines such surveillance and stigma in blood-borne pathogen protocol, using the example of recently refined policies in Newfoundland, Canada. We argue that policies distinguishing HIV and hepatitis B and C as requiring special treatment are produced by a combination of four factors: (1) the ideological and political function of risk discourse, and how this overshadows actual measures of probability, (2) the historical association of HIV and hepatitis B and C as belonging to ‘deviant’ bodies, (3) the normalizing function of health surveillance mechanisms and (4) the contradictory image of the ‘sick’ doctor. It is crucial that health professionals be critical of bylaws that single out HIV and hepatitis B and C as these guidelines are unjust and may impede efforts to control the disease.
Pamela Wakewich, Brianne Wood, Crystal Davey, Ashlie Laframboise, Ingeborg Zehbe & on behalf of the ACCSS group
Regular Papanicolaou (Pap) screening has dramatically reduced cervical cancer incidence in Canada since the 1950s. However, Indigenous women’s rates of cervical cancer remain disproportionately high, a factor which is not acknowledged in national media or in educational materials reporting Canada’s new cervical cancer screening guidelines. Here, we present findings from a cervical cancer screening initiative in Northwestern Ontario. Based on participatory action research, we worked with 10 First Nations communities in the Robinson Superior Treaty area to increase awareness of cervical cancer risk, develop culturally sensitive tools for screening and education and test the efficacy of human papillomavirus (HPV) self-sampling as an alternative to Pap cytology. We conducted 16 interviews with health care professionals and 9 focus groups with 69 women from the communities. A central theme for both health care providers (HCPs) and community members was the colonial legacy and its influence on women’s experiences of cervical cancer screening. This was evidenced by a strong sense of body shyness, including shame related to sexuality and sexually transmitted infections, concerns about confidentiality in clinical encounters and distrust or caution around HCPs. Reaffirming women’s traditional caregiving and educational roles, enhancing mother and daughter communication, improving cultural sensitivity in health care and education and adoption of HPV self-sampling to increase women’s privacy and control of the cervical cancer screening experience were endorsed. We argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening.
Sara Komarnisky, Paul Hackett, Sylvia Abonyi, Courtney Heffernan & Richard Long
For First Nations tuberculosis (TB) patients in the Prairie Provinces, the past matters. In this paper, we draw on the analysis of historical statements made by 20 First Nations interviewees with infectious TB to explore the function of talking about the past in relation to a current diagnosis of TB and the implications of historicity on contemporary TB prevention, programming and care. Despite interviewees not being asked directly about past contexts of TB treatment, they talked about historical topics such as the removal of First Nations TB patients from communities for treatment in distant sanatoria, painful and invasive surgical procedures once used to treat TB, and the attitudes that persist due to the ongoing failure to eliminate TB from First Nations communities. In these narratives, past experiences of TB treatment are intimately connected to present-day experiences and context. What happened ‘years ago’ profoundly affects the health and well-being of people diagnosed with TB today. Attempts to eliminate TB among First Nations peoples in Canada must also address its historical legacy. Understanding the contemporary effects of past TB treatment and mistreatment among First Nations peoples in the Prairie Provinces can also be seen as part of a larger project of truth and reconciliation in Canada, which involves both Indigenous and non-Indigenous Canadians.
Isaac Warbrick, Andrew Dickson, Russell Prince & Ihirangi Heke
In this paper we consider what impact a biopolitics that creates a compliant self-governing weight-focused population has had on Māori health in Aotearoa/New Zealand. We frame this discussion with three vignettes that in different ways demonstrate the deleterious effects of the individualisation of health on Māori. We argue that the current biopolitics is best explained as ‘the health of Maoris’ not ‘Māori Health’. To counter this current biopolitics we put forward an alternative epistemology, the ‘Atua Matua’ framework. This epistemology pays respect to a Māori view of health that is holistic, encompassing physical, emotional, spiritual, cultural and familial well-being and does not give ground to the requirement for individualism so prevalent in neoliberalism. Finally, we consider what this new epistemology might offer to the public health agendas in Aotearoa and other countries where indigenous populations suffer ill health disproportionately. Thus, our implications have potential not only for Māori health but human health in general.
This paper contributes to the literature on the phenomenon termed mHealth through a critical examination of wearable posture-tracking technologies. The paper specifically reports on a qualitative document analysis of promotional materials for three devices, carried out with the aim of assessing their mode of operation, the logic underpinning their development and their purported benefits for users. Findings initially highlight how Lumo Lift and Lumo Back, made by the company Lumo Bodytech Inc., and Prana, made by Prana Tech LLC, are designed to enable haptic surveillance and discipline whereby the body is monitored and ‘reprimanded’ through the touch. These forms of interactive posture training are underpinned by scientific insight from fields such as biomechanics and by data science on consumer posture habits. In turn, the benefits for those engaging with commercial posture-tracking devices are said to include, unsurprisingly, better posture, but also a less tangible form of ‘optimised’ living. With these findings in mind, it is argued that the arrival of interactive posture technologies has two main implications. In one sense, whereas good posture has historically been imagined as a dividing line between ‘civilized’ humans and ‘uncivilized’ others, devices such as Lumo Lift make posture into a matter of posthuman optimisation: humans and non-humans are enfolded in the pursuit of self-betterment. In another sense, posture technologies are important in emboldening the wider mHealth phenomenon, privileging as they do the idea that commercial technologies are now allies and not foes when it comes to improving health.
Mare Knibbe, Marten de Vries & Klasien Horstman
This article offers a critical analysis of how to address social inequalities in mental health. In public mental health, inequalities are commonly construed as a problem of reach, implying that existing mental health expertise often fails to reach low-income groups. We discuss two critiques on the ‘reach-paradigm’ in mental health promotion: the impoverishment of idioms of distress and the tendency to transform complex political issues into clinical ones that are assumed to be backed by evidence. Furthermore, we present the findings of our ethnographic research of an alternative approach to mental health promotion that used media storytelling focused on local knowledge and social context. Our analysis is guided by anthropological research on idioms of distress and sociological literature on health promotion and social inequalities.
Spenta Kakalia & Hasan H. Karrar
Since 2005, Pakistan has witnessed a net increase in polio, reaching a 15-year crest in 2014 when 306 cases were reported. Pakistan, along with Afghanistan, is one the remaining two polio-endemic countries. The numbers of cases reported in Pakistan in 2014 were far in excess of Afghanistan (28) and Nigeria (6). This paper focuses on the endemic militancy plaguing the country that has recently created grave obstacles for countrywide polio eradication. We argue that the relationship between polio and militancy in Pakistan has had two facets. First, polio vaccination efforts have become a casualty of militancy: over the last decade, polio vaccination was periodically banned in militant strongholds, large cohorts of children remained unvaccinated in remote frontier regions as vaccinators were unable to reach them, and anti-vaccination discourses in many parts of the country deterred others from vaccinating their children. The second relationship between the presence of polio in Pakistan and militancy is one where state-led polio vaccination efforts became a target of militancy. This was through the deliberate killing of polio workers; since July 2012, 71 contractual government employees tasked with administering polio vaccines have been killed, posing impediments to vaccine coverage. This paper concludes that in addition to implementing policies to improve vaccination coverage, endemic militancy must be addressed before polio can be eradicated.
Jade Boyd & Thomas Kerr
In Canada and other western nations there has been an unprecedented expansion of criminal justice systems and a well documented increase in contact between people with mental illness with the police. Canadian police, especially in Vancouver, British Columbia (BC), have been increasingly at the forefront of discourse and regulation specific to mental health. Drawing on critical discourse analysis, this paper to explores this claim through a case study of four Vancouver Police Department (VPD) policy reports on ‘Vancouver’s mental health crisis’ from 2008 to 2013, which include recommendations for action. Analyzed is the VPD’s role in framing issues of mental health in one urban space. This study is the first analysis to critically examine the VPD reports on mental health in Vancouver, BC. The reports reproduce negative discourses about deinstitutionalization, mental illness and dangerousness that may contribute to further stigma and discrimination of persons with mental illness. Policing reports are widely drawn upon, thus critical analyses are particularly significant for policy-makers and public health professionals in and outside of Canada.
Maria J. Ferrera, Rebecca T. Feinstein, William J. Walker & Sarah J. Gehlert
The risk of African American women dying from breast cancer is estimated to be 41% higher than that of White women throughout the USA. Using a community-based participatory research (CBPR) perspective, this qualitative study elicited attitudes, beliefs and concerns about breast cancer and its treatment amongst African Americans living in Chicago. Five hundred and three women and men were recruited from 15 of Chicago’s predominantly African American South Side neighborhoods. Participants were interviewed in 49 focus groups, 2–3 focus groups representing each neighborhood. Grounded theory was used to analyze data. A prevalent theme in the analysis was a general sense of mistrust amongst African Americans towards breast cancer treatment and the health care system at large. This theme involved notions of being treated like a guinea pig; living in the legacy of Tuskegee and other forms of historically rooted experimentation on African Americans; and being maltreated because of race. These findings suggest that historical and contemporary incidents remain a point of debate. Findings warrant the promotion of increased cultural sensitivity amongst health professionals regarding this historically rooted mistrust and its present-day implications.
Public health advocates aim to maximise affordable access to good quality essential medicines. This goal often conflicts with the profit-seeking ambitions of the pharmaceutical industry. Since the World Trade Organisation’s Trade-Related Aspects of Intellectual Property Rights agreement, the extension and enforcement of intellectual property (IP) rights has become the dominant discourse in global medicines governance. Public health advocates operating within this framework face significant obstacles and challenges. This paper presents an historical perspective to the contemporary debate over medicines and patents by examining the evolution of international medicines governance between the 1940s and 1970s. This research indicates that debates around IP and medicines were more advanced in terms of equity and access in the 1960s and 1970s than they are today. While acknowledging the existence of obstacles and challenges for advocates, the paper argues that alternative frameworks can and should be reasserted in global debates about medicines governance.
John I MacArtney
Having a ‘balanced lifestyle’ is often promoted as one way to manage the competing demands of contemporary life. For people with cancer, those demands are often multiplied, particularly when they use self-health approaches that seek to bring together an array of biomedical and complementary and alternative medicine therapies and practices. Yet, how balance is used in this complex healthcare milieu and the affects it has on experiences of illness are less well understood. In order to follow the polyphonic narratives involved, two case studies of women with breast cancer who used cancer self-health approaches were analysed. By exploring different modes of subjectivation in the case studies, balance was found to affect experiences of health in contemporary society in multiple ways. In particular, it was one way through which participants saw themselves as being able to maintain a critical engagement not just with their healthcare, but with their self and life.
For too long, medical/psychiatric and psychological studies, with focus on emotional sensitivity, personality traits, and correlation with psychopathology, have dominated research on self-injuring acts. The phenomenon thus has been defined as a predominantly medical issue. However, a large body of community prevalence studies show self-injuring acts to be a common phenomenon in society, and most of those who self-injure are unknown in psychiatric or other clinical settings. This article describes and analyzes the medicalization of self-injuring acts and argues a need to move research on self-injuring acts out of the medical paradigm. There is a need to explicitly explore the impact of social, cultural, structural, and gendered factors surrounding and influencing self-injuring acts. A non-medical approach, beyond the limits of the medical perspective, would feed research forward and create a more nuanced view on this widespread social phenomenon.
Esmée Hanna and Brendan Gough
Relatively little research on infertility focuses exclusively or significantly on men’s experiences, particularly in relation to emotional aspects. Evidence that does exist around male infertility suggests that it is a distressing experience for men, due to stigma, threats to masculinity and the perceived need to suppress emotions, and that men and women experience infertility differently. Using thematic analysis, this article examines the online emoting of men in relation to infertility via forum posts from a men-only infertility discussion board. It was noted that men ‘talked’ to each other about the emotional burdens of infertility, personal coping strategies and relationships with others. Three major themes were identified following in-depth analysis: ‘the emotional rollercoaster’, ‘the tyranny of infertility’ and ‘infertility paranoia’. This article then offers insights into how men experience infertility emotionally, negotiate the emotional challenges involved (especially pertaining to diagnosis, treatment outcomes and their intimate relationships) and how they share (and find value in doing so) with other men the lived experience of infertility.
Janne Huovila and Sampsa Saikkonen
What constitutes healthy eating is experiencing ongoing public debate, and this debate is increasingly taking place on the Internet. In this article, using a dialectical approach to analyse rhetorical discourse, we investigated how six highly popular Finnish nutrition counselling bloggers construct dietetic credibility and understanding. Their argumentation is compared to that of two academic experts contributing to the blog of the National Institute for Health and Welfare. Theoretically, we draw on Michael Billig’s notions on how thinking and understanding are pervasively argumentative and reflect wider socio-cultural contexts, and on the dilemmatic nature of common sense. We demonstrate how the popular Finnish nutrition counselling bloggers rhetorically constructed a more particularistic and individualistic understanding of healthy eating in their argumentation in critical opposition to the universalistic and population-based understanding. In the popular Finnish nutrition counselling bloggers argumentation, practical, subjective and moral knowledge was valued, alongside abstract, scientific knowledge. In contrast, the National Institute for Health and Welfare bloggers typically utilised population-based averages and causalities in their argumentation. We argue that arguing over healthy eating in the public domain is fundamentally an epistemic struggle, in which different forms of knowledge and ways of knowing are valued, and dilemmas related to healthy eating are deliberated.
The concept of careers has an extensive history in the sociology of health and illness. Among other things, the notion of a career has been used to describe the changing identities of patients diagnosed with mental illness, to identify distinct stages in the progression of various illnesses, and to recognize the cooperative efforts of hospitalized patients. However, the career concept may be reanalyzed as part of an analytical metaphor that makes salient both the agency of people with illnesses and the social structures in which they are enmeshed. This metaphor, ILLNESS IS WORK, can valorize and aid understanding of the identity work and actions of patients with chronic illnesses, particularly illnesses with a low degree of social recognition and medical prestige such as myalgic encephalopathy and chronic fatigue syndrome.
Philanthropic temporary sobriety initiatives such as Dry July, FebFast and Ocsober have become increasingly popular in Australia and have begun to spread to other locations both for their fundraising potential and as a grassroots public health measure to promote more responsible attitudes to alcohol consumption. This article presents findings from a series of in-depth, post-campaign interviews with FebFast 2014 participants and staff about how these campaigns can be understood as a form of public pedagogy or non-traditional learning that purposefully cultivates and suggests health-promoting meanings for embodied experience. It explicates the mechanisms of public pedagogies that rely on embodiment and, importantly, considers the learner’s perspective on the pedagogical process. Temporary sobriety initiatives are found to operate thanks to (1) a structure that prescribes and facilitates short-term changes and enforces compliance with a social contract of philanthropy and (2) messaging that guides participants in their evaluation and assessment of their experience of temporary sobriety as physically and psychologically beneficial, as well as socially informative and impactful.
Hannah Fairbrother, Penny Curtis, Elizabeth Goyder
Reducing childhood obesity is an international priority and children’s diets, food knowledge and practices have come under intense scrutiny in both policy and popular discourse. Notwithstanding evidence that health interventions which resonate with children’s own views are the most effective, there is still relatively little research which mobilises children’s everyday perspectives on food to inform public health policy. We report key findings from a qualitative study with 53 children aged 9–10, attending two socio-economically contrasting schools in the UK. The study explored children’s understandings of food in everyday life and their ideas about the relationship between food and health. Throughout the study, despite recent attempts to position schools as key sites for public health interventions, children consistently emphasised families as the locus for enduring food practices. The research highlights the value of listening to children and applying our understanding of their perspectives to ensure that public health initiatives work with the important influences on their diet and health that they themselves identify.
Emma Rose, Stephen Lonsdale
This study provides insights into how a participatory painting activity impacts older people’s subjective wellbeing. The study uses qualitative methods to analyze the findings, and employs qualitative data collection methods to examine how creativity conducted in an environment of relational connectivity is beneficial to wellbeing. The findings demonstrate that processes of re-imagining landscape contribute to participants’ retaining significant places in the mind when physical engagement is limited. The study reveals how the activity of re-imagining landscape provokes emotions and memories that help participants connect the past with the present, and to connect their older and younger-age selves, positively to reaffirm their older age identity. The paper reflects on the intervention as a form of encounter with landscape whose benefits are potentially therapeutic for different groups, particularly those for whom engagement with memories may assist with processes of adaptation or transition.
Daniel Grace, Matt Egan, Karen Lock
One approach to addressing the negative health and social harms of excessive drinking has been to attempt to limit alcohol availability in areas of high outlet density. The Licensing Act (2003) enables English local authorities the power to implement a Cumulative Impact Policy (CIP) in order to tackle alcohol challenges. More than 100 English local authorities have implemented a CIP in one or more designated areas. We examined local licence decision-making in the context of implementing CIPs. Specifically, we explored the activities involved in alcohol licensing in one London local authority in order to explicate how local decision-making processes regarding alcohol outlet density occur. Institutional ethnographic research revealed that CIPs were contested on multiple grounds within the statutory licensing process of a local authority with this policy in place. CIPs are an example of multi-level governance in which national and local interests, legal powers and alcohol licensing priorities interface. Public health priorities can be advanced in the delivery of CIPs, but those priorities can at times be diluted by those of other stakeholders, both public sector and commercial.
Alexandra B. Collins, Surita Parashar, Kalysha Closson, Rosalind Baltzer Turje, Carol Strike, Ryan McNeil
This study examines the influence of territorial stigma on access to HIV care and other support services. Qualitative interviews were conducted with thirty people living with HIV (PLHIV) who use drugs recruited from the Dr. Peter Centre (DPC), an HIV care facility located in Vancouver, Canada’s West End neighbourhood that operates under a harm reduction approach. Findings demonstrated that territorial stigma can undermine access to critical support services and resources in spatially stigmatized neighbourhoods among PLHIV who use drugs who have relocated elsewhere. Furthermore, PLHIV moving from spatially stigmatized neighbourhoods – in this case, Vancouver’s Downtown Eastside – to access HIV care services experienced tension with different groups at the DPC (e.g., men who have sex with me, people who use drugs), as these groups sought to define who constituted a′normative’ client. Collectively, these findings demonstrate the urgent need to consider the siting of HIV care services as the epidemic evolves.
Some vaccine supporters interpret vaccine uncertainties as a form of public ignorance caused by patients’ online research, failed physician–patient relationships, or inadequate knowledge translation. These interpretations often portray health professionals as homogeneously accepting of all scheduled vaccines for all patients. Nonetheless, health professionals may have limited knowledge about vaccines because the demands of their profession require them to have a broad understanding of a variety of health topics. In this article, I draw on data from interviews with twenty-six physicians and seven nurses in Alberta, Canada between 2013 and 2014, to examine how they used narratives to convey confidence, uncertainty, or doubts in vaccines. All interviewees supported the culturally dominant vaccine narrative that vaccines are essential to population health, yet they also spoke about uncertainties. Interviewees managed their uncertainties through tactics that confirmed accepting vaccination was the most desirable course of action. With each of these tactics, interviewees shared narratives about communicable diseases, vaccine benefits and risks to individual patients, and their reasons for trusting in medical science. When these narratives did not fully resolve medical uncertainties, health professionals often explained that either vaccination was beyond their professional responsibilities or that their uncertainties were irrelevant.
Karen Christensen & Jill Manthorpe
Many long-term care systems are seeking to address problems of growing demand, increasing expense, and higher user expectations. For many of them fostering care at home and private care arrangements are attractive options. The long-term care sector in England is typical of these systems. Over the last 2 decades, government policy in England has placed stronger emphasis on people’s choice and control when receiving care services. People with care and support needs may be eligible for public funds to employ care workers or to use them in other ways promote their well-being. These financial transactions are a major part of the policy of personalisation in adult social care, as confirmed by the Care Act 2014. Drawing on findings from life story interviews with 31 migrant care workers who had worked for disabled or older people in England, conducted 2011–2013, we note the potential for expanding the sociologically inspired concept ‘personalised risk’. This necessitates an appreciation of risks potentially faced by the multiple parties in the care relationship and a differentiated set of structural risks. Applying a multilevel analysis we highlight the potential risks of ‘informality’ of employment conditions experienced by directly employed care workers, the ‘emotional’ content of care worker-employer relationships, and ‘intimacy’ of employer/employee roles. In this article, we offer an empirical based contribution to the wider discussion of risks and risk theory derived from policy changes being adopted by many developed countries that increasingly emphasise individual responsibility for personal welfare within an uncertain and mobile social world.
Preventive medications such as statins are recommended to an increasingly large number of people. To those who make these recommendations, prevention is synonymous with risk reduction; the clinical task of helping people decide about preventive medication is therefore widely framed as one of risk communication. In this article, I explore the role of risk and uncertainty in accounts of medication decisions, drawing on qualitative data from interviews carried out between 2011 and 2013 in the east of England with people who had been offered statins. I found that very few participants mentioned risk or likelihood, or described weighing benefits against harms, the process central to the risk communication project. Instead, those who had decided to take statins described their certainty that statins were needed to treat current problems. This certainty was informed by knowledge about the present or the past; information about possible future harms was presented solely as contributing to concern about current problems. In contrast, those who had decided not to take statins explained their decisions in terms of the inherent uncertainty of information about the future, presenting this uncertainty as a reason to decline medication. This asymmetry between explanations for accepting and for declining statins is rooted in differences between the ways past, present and future information are handled. These findings challenge the assumption that decisions about statins are construed as decisions about risk by those offered them, and raise questions about the usefulness of using risk and uncertainty as key concepts for theoretical accounts of what is going on when people consider taking preventive medication.
In this article, I examine how young unemployed people deal with the risk of unemployment in the Danish welfare state, focusing on two main issues. I examine the technologies currently being used in the unemployment system to manage youth unemployment and I explore how the young unemployed people who are the subject of these technologies understand and react to them. I also consider the affective work, which underpins these technologies and the ways this shapes the framing of risks. In this article, I draw on a Danish research study (2014–2015) that examined the ways in which the Danish unemployment fund operated and I used in-depth interviews to explore the ways in which 33 young unemployed Danes interacted with the unemployment fund. Using the conceptual tools provided by the governmentality risk perspective, I analysed the relationship between institutionalised risk management and individual risk management. I found that the management of risk at the institutional level invoked the use of a screening tool that categorised young unemployed people into risk groups and this categorisation determined the intervention the young unemployed persons received. I found that in the new unemployment system, young unemployed people were treated not only as homo economicus, that is, rational actors responding to economic incentives but they were also seen as sensitive beings whose feelings and affects could be shaped by technologies empowering and motivating them in order to enable them to manage their own risk of unemployment more effectively. This psychologised the issue of unemployment.
Dossier on Africa, Human Rights, and Humanitarianism (in lieu of an abstract, overview of the issue)
Amal Hassan Fadlalla, Omolade Adunbi
Ongoing political conflicts in Africa, such as those in the Congo and the two Sudans, together with other transformations initiated by the Arab Spring in 2011, continue to generate debate about human rights and humanitarian interventions in the continent. Building on Mutua’s critique, the authors in this dossier move beyond the savior/savage narrative to re-interrogate the meaning of rights and national and transnational solidarities in the post–Cold War era. The five essays here examine the tensions between master narratives and counternarratives, the mobilization of new celebrities and humanitarian activists, the ‘‘intimate politics’’ of rights in low-income urban households, the re-Orientalization of Islam and Muslim cultures, and the continuous denial of pastoralists’ land rights.
Amal Hassan Fadlalla
Lisa Ann Richey, Alexandra Cosima Budabin
Nadine Naber, Atef Said
Marianne Melander, Kjerstin Dahlblom, Bhoomikumar Jegannathan, and Gunnar Kullgren
Background: Traumatic events experienced by parents who have survived genocide influence mental health among their offspring. This study aims at exploring how the communication of traumatic events between Khmer Rouge survivors and their offspring was perceived by both generations.
Methods: Qualitative interviews were performed with six Khmer Rouge survivors and with six young people representing the second generation and were analysed using a content analysis approach.
Discussion: Parents felt that informing their children was important to instill gratitude for living a better life and to empower them. Among children, this was met with empathy but sometimes also disbelief and at times they blamed their parents for being too submissive.
Conclusion: The study discloses the complexity, pros and cons of intergenerational sharing of trauma.
Emily Yates-Doerr* & Megan A. Carney
Attention to culinary care can enrich the framing of health within medical anthropology. We focus on care practices in six Latin American kitchens to illuminate forms of health not located within a singular human subject. In these kitchens, women cared not for individuals but for meals, targeting the health of families and landscapes. Many medical anthropologists have critiqued health for its associations with biomedicine/biocapitalism, some even taking a stance ‘against health.’ Although sympathetic to this critique, our focus on women’s practices of caring for health through food highlights dissonances between clinical and nonclinical forms of health. We call for the development of an expanded vocabulary of health that recognizes health care treatment strategies that do not target solely the human body but also social, political, and environmental afflictions.
This essay discusses the Indian government’s implementation of maternal death reviews (MDR) across the country in response to a global WHO strategy called ‘Beyond the Numbers.’ India’s MDR process attempts to better count and assess maternal deaths across the country, yet considerable challenges remain. Existing studies of the MDR process in India still reveal systemic failures including poor quality of obstetric care, as well as omissions or delays of care that are covered up or denied. An ethnographic case study suggests ways that ethnographic sensibilities or techniques could be used to harness community stakeholders or lay perspectives by privileging ambiguity, multiplicity, and conflicting views in order to reveal these systemic omissions or failures of accountability. It concludes by suggesting how ethnographic ways of knowing might elicit lay concerns or critiques that threaten the very medical privileges that the MDR process inadvertently shores up.
Kevin Louis Bardosh
Efforts to control neglected tropical diseases have increasingly focused on questions of implementation. But how should we conceptualize the implementation process? Drawing on ethnographic fieldwork between 2010 and 2012, in this article I explore efforts by a small-scale public–private partnership to use private veterinarians to sustainably control zoonotic sleeping sickness in Uganda. With a fundamental tension between business incentives and vector control, I show how divergences in knowledge, power, values, and social norms shaped project implementation and community responses. Reflecting more widely on the relationships between project plans and local realities, I argue that these encounters reveal the heuristic value in approaching global health interventions as evolving ‘social experiments.’ This metaphor reveals the uncertainty inherent to dominant narratives and models, the role of available expertise in defining the limits of action, and the need for continuous adaption to synchronize with emergent social and institutional topographies.
Mónica Berger-González, Ana Vides-Porras, Sarah Strauss, Michael Heinrich, Simeón Taquirá & Pius Krütli
Biomedicine fosters particular styles of interaction and behaviors, with the therapeutic relationship seen as occurring between a doctor and patient. In contrast, where alternative modalities of healing are practiced, relationships go beyond a dyadic interaction and include wider social networks. In this article, we propose the existence of a ‘therapeutic unit’ in Maya healing practices in Guatemala that binds healer, wellness seeker, family, and community members, along with the spiritual and natural realms, into a coherent system requiring all of these elements to achieve success. Drawing on interviews with 67 Maya healers, we describe healers’ understanding of raxnaq’il nuk’aslemal (well-being), and show how these interactions activate wider networks that play crucial roles during treatments. We highlight how holism is expressed in relationships typical of indigenous healing systems, and how an appreciation of this is important for developing culturally appropriate health care provision systems.
Philosophy, Ethics, and Humanities in Medicine (open access)
Sohair R. Fahmy and Khadiga Gaafar
Background: Although animal research ethics committees (AREC) are well established in Western countries, this field is weakly developed and its concept is poorly understood in the Middle East and North Africa region.
Objective: Our main objective was to introduce the concept and requirements of ethical approaches in dealing with experimental animal in research and teaching in Egypt.
Methods: Due to its very recent inception, Cairo University, Faculty of Science IACUC decided to operate in accordance with Guide for the Care and Use of Laboratory Animals 8th Edition 2011 (the Guide) since Egypt has not yet compiled its own guide.
Results: Fifty protocols were reviewed in 2013–2014. Only ten protocols were reviewed in 2013, but in 2014, forty protocols were reviewed. In 2013 all protocols were approved and in 2014, number of approvals were 35, the number of deferrals were 4, and one refused protocol. Master’s theses (MSc) research protocols constituted the majority of the total reviewed protocols. This is attributed to the decision of the Board of the Faculty of Science, Cairo University in September, 2013 that the approval of the IACUC is mandatory before conducting any research involving animals or theses registration.
Conclusion: The first IACUC was established in the Cairo University, Faculty of Science, since 2012. The challenges encountered by the committee were diverse, such as the absence of laws that control the use of animal models in scientific research, lack of guidelines (protocols for experimental animals in research) and, mandatory ethical approval for any experimental animal research.
Susan Reynolds Whyte, editor
Contributions by Godfrey Etyang, Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne Mogensen, Jenipher Twebaze, Michael A. Whyte
Duke University Press, 2014, 328 pages
What would happen if an entire generation of people who were expected to die experienced a ‘medical resurrection’?What would that generation do with their second chances?What would life look like for them? Susan Reynolds Whyte and her team explore these and other questions in Second Chances: Surviving AIDS in Uganda.
The medical miracle under investigation is anti-retroviral therapy (ART). When first introduced to Uganda, antiretroviral medication (ARVs) literally brought people back from the brink of death. An entire generation of Ugandans who had been expected to die of AIDS was suddenly given a second chance at life.
As Whyte and her team argue, survival created a ‘biogeneration’: a generation marked by the presence of both a medical diagnosis (HIV) and treatment (ARVs). The ‘return to life’ gives this first cohort the shared experience necessary to be a generation unto themselves. Unlike chronic illnesses like diabetes, which also require daily medication, ART in Uganda entails close treatment surveillance, clientship within particular clinical networks, and an identity assumed from the social networks informed by diagnosis, access, and adherence to ARVs. As the authors specify toward the end of the book:
‘The new social relations of the first generation were first and foremost to their health care providers and to the treatment programs they joined. Those relationships were the basis for possible membership in support groups and HIV welfare organizations. They were, in any case, the condition for continuing life in their families’ (277f).
That is, what is new in the biosociality of this first generation to survive HIV is ongoing clientship as a form of treatment, with all the repercussions that clientship has within family and professional relationships. These repercussions included some clients taking on new roles as community educators and treatment group facilitators. For almost all in that first generation, visibility – among relatives and within the community – became a key component of ‘coming back to life’.
Because this is a book about second chances, it’s important to note what the book is not: Second Chances does not focus on global political economy, structural violence, or the ethnography of clinic workers or the interaction of clinic administration with Ministries of Health or the Uganda AIDS Commission. Likewise, reflecting the mostly heterosexual transmission pattern of HIV for most of Africa, the way Ugandan politics intersects with HIV and the MSM (men who have sex with men) community is not discussed.
The ethnographies which form the backbone of Second Chances emerged from two rounds of fieldwork. From a group of 48 people referred by clinics to the researchers for interviews in the first round of fieldwork in 2005 – 2006, 24 were selected from seven treatment sites throughout the country to participate in eight follow up interviews during the second round of fieldwork in 2006 and 2007.
While the authors note the sample is not fully representative of the ‘average’ Ugandan living with HIV, the authors nevertheless included urban and rural, male and female, free and paying clients in the study. The age range of participants was slightly older (between 30 and 50 years of age) and slightly better educated than the average Ugandan. The follow up visits were conducted at homes and work, which decentered AIDS from the discussion and allowed a broader insight into the daily lives of participants: visits were spent chatting over family and other matters, in a fairly successful effort ‘to see how treatment fits in with other concerns’ (p xi).
Showing the flexibility of the concept ‘generation’, which the authors root in Mannheim’s 1923 concept of a group consciously sharing a particular, psychologically formative location within historical events, the authors themselves point out that three ‘academic generations’ of anthropologists contributed to Second Chances: Susan Reynolds Whyte and her husband Michael Whyte comprised the first generation; their two Danish students form the second; and four Ugandan anthropologists comprise the third (10, ix).
The Ugandan researchers conducted both the initial interviews and the follow-up visits. Local anthropologists therefore were able to use a self-reflexive, rather than an imperialist, gaze. Among other issues, the mix of local and foreign anthropologists served to eliminate intimations that AIDS is an ‘African problem’, resulting from a somehow ‘deviant’ ‘African sexuality’ at odds with a standard ‘Western sexuality’.
The authors call Second Chances a ‘polygraph’, in contrast to monographs by one author or edited volumes of one author per chapter. In this polygraph, multiple authors work from the same data, teasing out themes and co-authoring chapters together. With eight pairs of eyes, multiple perspectives on a common story emerge.
The end result is a clearly organised book of twelve chapters (including the introduction) which can be loosely grouped into three sets of related themes: accessing ART; family life; and normalizing ‘the resurrected body’. Each chapter is prefaced by a case study, followed by separately marked thematic analyses which draw in the lives of other participants. While a polygraphy does mean that no single theoretical approach dominates the narrative, the reader can use the opening case studies to think through her or his own favoured theoretical model.
The introduction provides background to the field site: Doctors in Uganda were the first to report AIDS cases in Africa (where it was called ‘slim’) in 1982. HIV treatment in Uganda remains dependent on foreign funding, with a resulting diversity of treatment programs. When ARVs arrived in the early 2000s, the research team had a unique opportunity to record the formation of a ‘biogeneration’.
But who gets this ‘second chance’? A particular policy implication highlighted in the first chapter, ‘Connections’, is that not everyone has equally effective, large, or varied social connections — and thus not everyone has equal chances for finding affordable, accessible care in a timely manner. That includes testing for HIV, introductions to treatment sites, and negotiating bureaucracies within treatment programs.
Second chances can also depend on who you get to know. The linguistic shift from ‘patients’ to ‘clients’ discussed in the second chapter underlines how the ‘lopsided friendship’ of a client-patron relation keeps treatment flowing smoothly, even when paperwork is the official seal of ‘belonging’ to a clinic.
Getting to treatment another focus of life on ART, and the third chapter. Because families and workplaces in Uganda often bridge urban and rural locales, while treatment facilities, which can close from lack of funds or relocate, are almost exclusively in cities, clients sought ‘a tactical congruence among livelihood opportunities or requirements, family support, and treatment connection’ (81).
The authors address the classical anthropological theme of kinship through chapters devoted to the family, partners, and children. In the 1980s and 1990s, AIDS reconfigured families and familial alliances; the authors consequently argue that ‘families can be understood as a changing network of possible relationships rather than as units of undifferentiated solidarity. Second chances are heavily dependent on these contingencies of relationship for better or for worse.’
The authors note that ‘generally, the extra challenges of HIV and ART exacerbated existing tensions and strengthened ties that were already sound.’ (107) One element in this dynamic which stood out was how food resources, often tied to clientship in an ART program, condition family ties through treatment program policies towards food sharing among clients’ families.
Meanwhile, ‘testing and ART served to problematize sexuality, to cast sexual relations in another light and make them objects of concern,’ which the authors discuss in ‘Partners’ (chapter five). In cases of partners having different HIV status, ‘Condoms took on meanings of care, responsibility, virtue, and enlightened modernity.’ (138)
The chapter on children is especially noteworthy. As the authors observe in chapter seven, ‘so much of the discourse about HIV is about relationships with sexual partners, yet in many ways relationships with children are the most intense and problematic. Children are about the future that is restored to those who did not die as they expected,’ the living symbol of a second chance (164).
The final set (Bodies, Food, Medicine, Life) treats the theme of returning to life: the impact treatment has on work-life, perceptions of the body, and reintegration into normal social expectations about ‘making a living’.
ART creates challenges in managing work schedules around eating and medication-taking, quite apart from potential workplace stigma regarding HIV. Food itself presents its own realm of adaptation to ARVs, since some medication must be taken with food, and weight lost before ARVs must be regained through changed nutrition. Intimately tied to the theme of public presentation for work is the anthropological theme of the body. The body’s appearance, its role in acquiring, advertising, or hiding one’s HIV status are all relevant to how ART has presented second chances to live in Ugandan society. Each of these themes is amply treated in its own chapter.
The final chapters return to the questions posed at the outset: How is ART medicine viewed differently from other common medications like anti-malarials and insulin? What happens once treatment is accessed and becomes regularly available? Once people ‘return to life’, how do they meet the challenges of finding wives, untangling social relations, negotiating community ties? In a sense, the final chapter opens onto the experience of the second biogeneration, a generation not expected to die of HIV/ AIDS, but to remain in the community while integrating the particularities that come with ARV clientship.
Over all, Second Chances is an excellent source of health narratives about negotiating HIV status in Uganda, Second Chances will naturally interest anthropologists of East Africa, HIV and biosociality. Chapters on embodiment, via the physical changes accompanying both treated and untreated HIV, are well described.
NGO policy makers can also read the material with an eye to potential intervention points, including how work and family inform clients’ adherence. The chapters also underline potential sources of client disillusionment, and how competition between programs plays out in client and family decision-making about where to test and continue treatment.
The work does have a few drawbacks, none of which undermines the fundamental argument. The polygraphic nature of Second Chances means no one writing style predominates. Combined with the multiplicity of interlocutors, this constant shift in style makes for an occasionally taxing read. While the authors do a decent job of including epithets (‘Saddam the Soldier’) for the ‘cast of characters’ in the body of the work, the initial onslaught of participant names was a bit overwhelming.
Despite tantalising allusions to the role of religion in many participants’ lives, the authors do not devote a chapter specifically to religious beliefs, HIV, and ARV. Religious experience and illness is therefore a theme which warrants further attention from other anthropologists, especially given the frequent references to ARVs as a miracle or gift from God, and the overall theme of resurrection.
Finally, some readers might argue that this work is dated already and no longer relevant. The 90-90-90 UNAIDS approach is being rolled out; CD4 levels no longer determine when treatment is initiated; and the global recession underlines the fragility of donor-based treatment programs.
Such characterisation, however, would miss the point: this book is about what it is like for the first generation to live with ART embedded into daily life. As the authors explain,
‘Sociality requires us to look at the everyday forms of interaction that are often beyond the purview of health-policy makers, even though they are essential strands of the web in which health rests. … Taking this broad approach means using ART as an optic for seeing lives and the context in which they are lived, just as it means using lives and context for understanding ART.’ (2)
In other words, by examining how people go from being at death’s door to becoming community leaders, relationship brokers, and network facilitators, Second Chances looks at the relationship between power and illness, social networks and recovery, and the reliance of all four on the simple but uncertain fact of living.
A worthwhile look at the first generation to survive HIV in Uganda, Second Chances captures a richly textured image of a generation which was the first to be marked by both medical diagnoses and medication adherence – and the varieties of making a living with a second chance at life.
Jason Johnson Peretz holds an M.Phil in Medical Anthropology from Linacre College, University of Oxford, and an MAOM from the New England School of Acupuncture. He currently works in the Division of Global Health, HIV and Infectious Disease at the University of California, San Francisco (UCSF), and volunteers as a sexual health and HIV test counsellor. Jason consults on projects at the intersection of global public health policy and human rights. He can be reached on Twitter @JasonOxon.
University of Chicago Press, 2013, 320 pages
In Sex Itself: The Search for Male and Female in the Human Genome (2013), Sarah Richardson takes gender criticism to a new level — the genomic one. Following the work of noted scholars such as Evelyn Fox Keller (1995), Anne Fausto-Sterling (2000) and Sarah Martin (1991), Richardson’s text explores the interplay between biological notions of sex and cultural conceptions of gender. With close historical attention, Sex Itself takes as its analytic object the sometimes bewildering practices making up the “search” for sex, from the discovery of distinct X and Y chromosomes to the attempt to enumerate the genetic differences between males and females. Richardson compellingly argues that gender is central to our understandings of chromosomal sex, and advocates for the acknowledgement of the interplay between sex and gender so that we may recognize how gender acts not only as a source of bias, but as a productive force driving genetic research.
Richardson troubles the etiological explanation of sex often assumed in both scientific and popular discourse; where genetic factors are taken as necessarily prior to other biological components and socio-cultural notions of gender are overlaid upon individual bodies and biologies (Chapter 1). Instead, she draws out themes of dynamism and exchange, noting how scientists have historically overlooked inherent ambiguities in the relationships between X and Y chromosomes in favor of promoting findings which support gendered ideas about biological sex differences. Though Richardson’s critical analysis centers on the ways in which socially contingent meanings of ‘male’ and ‘female’ have fundamentally shaped scientific practice, she does not shy away from technical and historical detail. Fortunately, her impressively clear writing, and the clever illustrations judiciously sprinkled throughout the text, help her less scientifically inclined readers quickly develop requisite familiarity with core biological and genetic concepts.
The text comprises ten chapters that trace the historical development of scientific understandings of sex, with the first and last chapters providing a conceptual overview and potential implications of her argument, respectively. Chapters 2 and 3 describe both the first discovery of X and Y chromosomes in 1890 and their condensation into the “sex hormones.” Tracking the engagement of a handful of key experimental biologists, primarily in the United States, Richardson shows how theories of sex determination changed over the first part of the 20th century. She argues that powerful social concepts of gender influenced the framing of scientific research on every level — from linguistic choices in publications to the objects taken as deserving of scientific inquiry. Her approach complicates scientific rhetoric of linear progress where older, untrue, findings are replaced by newer ones due to technological progress. Instead, Richardson is concerned — and rightly so — with the myriad ways in which prior concepts inform scientific advances even when older findings become discredited.
As Richardson writes, the goal of the text is to explore the role of gender in the practices, claims, and theories of genetic science (Chapter 1). One way she does this is by a close assessment of the conflicts undergirding scientific progress, reflecting in part Bruno Latour’s call in Science in Action (1987) to follow the controversy. In the case of the discovery of X and Y chromosomes, this includes demonstrating the key role of the research of Nettie Maria Stevens, a female biologist whose contributions are often overlooked. This is an important acknowledgment of the many levels that gender inequality works in the sciences; even the story of scientific progress is unable to escape the influence of dominant gender ideology (the overarching social understanding of male and female in the US (12)) which subsumes the roles (and biologies) of women to men. Though initially controversial, ultimately sex chromosomes become the terminology of choice, despite Stevens’ preference for the more general “heterochromosomes” (43). This linguistic shift solidified a binary relationship between male and female biologies as well as concretized the ontological foundations of gender difference (Chapter 3, “How the X and Y Became the Sex Hormones”). The enduring significance of terminology resurfaces in Richardson’s final arguments, where she maintains that acts of naming on the genomic scale reflect and contribute to social ideas of gender as well as delineate the spaces of appropriate research (206-207).
Chapters 5 and 6 emphasize the myriad ways in which the X and Y chromosomes become “sexed.” Tracking the influence of culture, in particular gender ideology, the mosaicism of the double x became symbolically reflective of feminine “instability,” “mystery”, or “complexity” (110). Genetically speaking, mosaicism refers to the fact that female cells contain a mixture, or “mosaic” of X-chromosomes from both parents. In some cells, the paternally inherited X-chromosome is expressed, while in others, the maternally inherited X is expressed. On the other hand, males can only express the sole maternal X-chromosome they have. Additionally, research on criminality and the hypothesized XYY “supermale”, though short lived and rife with methodological and interpretive flaws (87), contributed heavily to the interpretation of the Y as the source of masculine aggression (Chapter 5, “A Chromosome for Maleness”). Richardson compellingly shows how the 1960’s and 1970’s view of sex and gender differences sustained the super-male hypothesis despite the strong evidence against interpreting an additional Y chromosome as indicating a higher likelihood of exhibiting violence, or aggression. While intersex advocates and sex researchers have changed some aspects of genomic sex research, Richardson argues that interpreting X and Y chromosomes as the essence of sex categories persists in research to this day.
What makes Richardson’s argument so compelling is, in part, her ability to avoid striking too hard a dichotomy between biological and cultural determinations of sex. By taking the development of scientific knowledge seriously, she is able to show the ways in which complexity and nuance becomes flattened in the race to create biologically causal models explaining some of our most human categories, without negating the existence of biological entities or foreclosing the relationship some of those entities may have to cultural forms. As Richardson rightly points out, feminist critiques of science have a long history of pointing out the existence of bias in science, in particularly showing how finding the socially expected (sex differences rather than sex similarities, aggression in the x, passivity in the y) has neglected other kinds of biological evidence, sometimes with disastrous consequences. Sex Itself, however, reaches beyond assessment of bias to argue for a more textured reading of the possibilities of integrating critical attention to gender into biological research on sex.
“Modeling gender in science,” as Richardson calls her approach, includes not only “gender criticality” or the practice of unveiling how gender operates in scientific pursuits, but also “gender valence” (Chapter 1, “Sex Itself”). She coins the concept of gender valence in order to distinguish her argument from feminist critiques which have primarily emphasized the production of bias, and to provide a way forward for scientists working on biological sex differences. To be gender valent, research must openly discuss and describe gender conceptions and often gender politics (17). To embrace a partiality of perspective, drawing on Donna Haraway’s notion of situated knowledge (1988), is not to limit the capacity of making scientific arguments but rather to articulate already existing constraints, assumptions, and biases. For Richardson, “visibility” and “flexibility” characterize gender valence (17), identifying the importance of both individual practices for those engaged in experimentation, publication, and research as well as social practices which normalize treating gender and sex as salient research categories. In particular, Richardson shows how often scholars who directly engage with gender politics are thought to be too explicitly feminist to also be sufficiently objective (Chapter 8, “Save the Males!”). However, Richardson notes that contrary to popular opinion, choosing not to discuss the impact of gender does not itself protect research from the impact of gender ideology. Rather, only transparency and explicit discussion can create more responsive and ethical research, as well as identify and remove bias.
What really matters in genomic sex research, Richardson tells us, is not denying differences in genes or the relationship between cultural concepts of gender and biological categories of sex, but rather critically and reflexively including the categories in genomic research. Her largest theoretical contribution is the reformulation of sex as a “dynamic dyadic kind,” in Chapter 9 (197-198). Treating sex as a new “kind,” or a new category altogether distinct from other individual biological characteristics foregrounds the incommensurability of sex and species as well as the mutually constituted nature of male and female in humans. Richardson is careful to write that she refers only to gametic sex, arguing that viewing sex as a “dynamic dyadic kind” is different from viewing sex as a strict binary, or two separate genomes, as it emphasizes a genetic perspective which takes both sexes as essential to the unit. I understand Richardson as attempting to hold fast to the biological necessity of researching sex differences while also considerate of the many interlocking factors, the “dynamicism” that makes up sex. However, despite her consideration of intersex conditions and anomalous chromosomal makeup in much of the rest of the text, it seems that the notion of a “dynamic dyadic kind” still shies away from fully incorporating a consideration of individuals whose biologies diverge from the expected genetic makeup. The potential for incorporating intersex conditions into the theoretical framework remains in potential, or perhaps assumed, rather than fully described.
While Sex Itself may not seem to present a fundamental overhaul of genomic sex research on its first read, Richardson’s detailed analysis of the interplay between gender and sex in the age of genomic research provides numerous suggestions both large and small for those engaged in biological sex research and those who study the interplay between gender, sex, and science. Many of these suggestions, if taken seriously, will lead to tectonic shifts in the ways that research on sex and gender is done. The risk of reverting to an overly rigid binary view of sex as well as the potential of genetic research to codify differences in sex is acknowledged (216), with the hopes that confronting not only biases but constructive influences from the outset will lead to better scientific practices and more robust genetic knowledge. Overall, this is an excellent addition to the feminist science studies literature, which should enjoy a wide readership across disciplines.
Fausto-Sterling, Anne. Sexing the body: Gender politics and the construction of sexuality. Basic Books, 2000.
Haraway, Donna. “Situated knowledges: The science question in feminism and the privilege of partial perspective.” Feminist studies 14, no. 3 (1988): 575-599.
Keller, Evelyn Fox. Reflections on gender and science. Yale University Press, 1995.
Latour, Bruno. Science in action: How to follow scientists and engineers through society. Harvard University Press, 1987.
Martin, Emily. “The egg and the sperm: How science has constructed a romance based on stereotypical male-female roles.” Signs 16, no. 3 (1991): 485-501.
Richardson, Sarah S. Sex itself: The search for male and female in the human genome. University of Chicago Press, 2013.
University of California Press, 2015, 256 pages
Pain has a famously intangible quality. To paraphrase Elaine Scarry, for the person in pain, “having pain” can be wholly consuming and experienced as concrete reality. But for all its “there-ness,” pain is difficult to pin down, measure and describe. This can be an isolating and lonely experience, made worse by the pervasive stigma that plagues those who have invisible disorders. All of which produces challenges for doctors asked to provide explanations for pain. Patients desperately need these explanations—they provide some order to what otherwise might be inchoate or disparate symptoms. Explanations suggest cause, dictate treatment, and attempt to prognosticate the future. And they are also infused with meaning, imbuing patients with judgments about their moral character. How responsible are patients for their symptoms? How deserving are they of their treatment?
The social production and cultural meaning of explanation takes center stage in Buchbinder’s beautifully written and provocative ethnography of an adolescent pain center. Buchbinder starts with premise that pain is not a wholly individual experience, but one produced in social contexts. Likewise, she argues, explanations for pain are never transparent descriptions of the body, but social creations—performances that provide legitimation for patients and practitioners, or rhetorical devices that serve to produce trust in doctor-patient interactions.
Buchbinder’s ethnography follows a variety of adolescent patients who are experiencing devastating, disabling pain as they receive treatment at “West Clinic,” an adolescent pain clinic. These patients live at home with their parents, and most have dropped out of school. West Clinic is described as their last, best hope to find relief. West Clinic, Buchbinder explains, has some distinctive features: it exists in a diverse location, but its diffuse structure, cash-only policies, and time-consuming treatment regimens effectively exclude all but the most privileged patients. The clinic also uses explanatory models that diverge from those in use elsewhere in pediatric pain medicine, which is important to keep in mind when considering potential generalizability. But the strength of Buchbinder’s book isn’t in the particulars of the specific explanations that she observes—it’s in her overarching reinterpretation of how we understand the deployment and uptake of explanations in clinical medicine.
Take, for example, the case of Michael Harris, who developed severe gastrointestinal pain and depression after an emotionally difficult year of school. Unlike many pain patients, Michael and his family entered West Clinic already thinking of his symptoms as psychological. However, the clinic’s primary physician, Dr. Novak worked diligently to change their explanation for the pain to a neurobiological paradigm. After diagnosing Michael with irritable bowel syndrome (IBS), which she described as “real,” she explained that this often happened with “really smart kids” whose brains and nervous systems make “faster connections.” But, she explained, this “neural glitch” could work in Michael’s favor, as the fact that he was a good, intelligent student would make it easier for him to reteach his body how to work.
Buchbinder describes Novak’s technique as part of a “personhood diagnostics” employed by West Clinic, in which a neurobiological framework is extended to include moral characteristics such as creativity, intelligence, and sensitivity. She explains that this approach serves to engage patients in a variety of obligations, including attending school, coping with pain, and adhering to an onerous treatment protocol, but it mostly manages to do so in a way that doesn’t automatically devolve into a mind/body dualism that blames patients for their symptoms.
Explanations shift, however, when clinicians talk amongst themselves (although sometimes these thoughts were shared with patients). Certain patients, especially those not progressing well in the program, get labeled as having features of “pervasive development disorder” (PDD)—a diagnosis no longer included in the Diagnostic and Statistical Manual—including concrete thinking, an interest in details and hyper-attentiveness. These patients were spoken about as having “sticky neurons” that resisted West Clinic’s treatments. Although his family was never told, Michael was described as “PDD-ish.”
Clinicians seemed to label patients (and even family members) of PDD quite liberally and, though Buchbinder didn’t say it as explicitly as I would have liked, often problematically. As an ethnographer who studies migraine, I was often deeply troubled by clinicians’ suggestive use of PDD. I am still angry about a young woman with migraine who was labeled with PDD simply because she requested for the lights to be turned down in an examination room. Light sensitivity is a signature symptom of migraine! The clinic should have its lights turned down in anticipation of these symptoms.
At other times and in other contexts, clinicians drew on psychodynamic arguments, laying blame on family dynamics, and pointing their finger towards poor parenting, which could take the form of everything from inadequate care to too much care or “enmeshment.” In interviews, health care providers would provide more sociological explanations, arguing that adolescents’ bodies were simply screaming out in resistance to the stress of overscheduled modern-day lives and expectations.
The explanations, themselves, are old bogeymen, some dating back centuries. Physicians have long attributed pain to sensitive nervous systems, intelligence, modern societies, and dysfunctional families. What Buchbinder does well is demonstrate how these explanations coexist, overlap, sometimes contradict each other but often work together, a feat she accomplishes by observing all the workings of the clinic, from doctor-patient interactions to backroom “team” meetings to patients’ lives at home. Some of the explanations work well and are taken up easily by patients. Some don’t. But their multiplicity casts a long shadow on studies that only capture actors’ explanations using one data point (for example, interviews). Explanations are used performatively and what is said in one setting may not be the same as what is said in another.
Buchbinder’s fascinating discussion of clinicians’ “neurofication” of subjectivity will interest a wide set of readers. Embedding personal and moral characteristics like intelligence, hard-work, and sensitivity in the brain can go a long way towards legitimating the symptoms of a person in pain. However, embedding moral characteristics in the brain can also reify these tendencies in problematic ways.
“All in Your Head” is an excellent addition to scholarship on health and illness and, particularly, on pain. It’s a must-read intervention in the anthropology and sociology of diagnosis. This is also the kind of careful and provocative text that I love to assign in classes. Buchbinder’s ethnography not only contributes substantially to our understanding of the social uses of explanations, it also exposes how the cultural meaning of these explanations depends on the language that is used and the social and cultural context in which it is delivered.
Joanna Kempner is an associate professor in the Department of Sociology at Rutgers University. She works at the intersections of medicine, science, politics, gender and the body. Her award-winning book, Not Tonight: Migraine and the Politics of Gender and Health, examines the gendered social values embedded in the way we talk about, understand, and make policies for people in pain.
Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press, 1985.
It was one of those typical late spring afternoons in Beijing, when the desert sand blowing from the North begins to give way to an electric atmosphere more pregnant with thunder than rain. Seated on a covered leather-armchair, I tried to concentrate my attention away from the rasp of the polyethene sheet under me and repeat the question: So what was it, in the end, that put a stop to the spread of SARS five years ago? The epidemiologist seated opposite me held one of those lucrative double posts one often comes across in China as in the US; professor at a medical faculty and officer in a key disease control apparatus of the republic. We do not really know, he replied, why it went or where it’s gone. But what will you do if SARS returns one day? I retorted. In a tone perched between a lament and a scoff, the epidemiologist replied: Exactly what we did last time.
This short ethnographic vignette encapsulates what in epidemiological literature has come to be spoken of again and again as “the lesson of SARS”. Following the end of the 2003 coronavirus epidemic, the WHO, the US CDC and the newly founded China CDC hailed the success of the measures against the outbreak. Yet, at the same time, they tacitly acknowledged that whilst there was evidence to support that the former halted the pathogen’s rapid spread across the globe, no demonstrable relation could be established between this and the sudden disappearance of the pathogen amongst human populations.
In other words, whereas anti-SARS measures, consisting largely in the deployment of quarantine and isolation (technologies developed in and little changed since early modernity), were seen as effective in protecting specific locations from the disease, the end of the pandemic in itself could not be shown to be related to these, but appeared instead to be “spontaneous” or at least generated by unseen factors, independent of human intervention.
This narrative makes SARS the latest example of an epidemiological, epistemological and at the same biopolitical pattern that can be best described as the problem of untimely ends. The phenomenon, I would like to argue, refers to such instances when an ongoing, devastating, and to all appearances unstoppable epidemic suddenly comes to an end. More, however, than simply pointing at the unanticipated secession of an epidemic, the notion relates to the principal effects of the suddenness of this end: the disallowance both of a clear cause-effect attribution of epidemic secession, and of an epistemological closure regarding the disease’s status as an existential risk for humanity.
We thus need to place the empirical problem of an untimely epidemic termination (and, more generally, of epidemic termination as such, in terms of what defines or ascertains the end of an outbreak) within the wider context of an altogether different kind of “end”. For in the imagination of the “next pandemic”, the end of outbreaks like SARS comprises the (always already dramatised) closing scene of a really-existing epidemic. Yet, at the same time, it is an event that defers the coming of the final end – the end of humanity both as a biological species and as an ontological condition, i.e. (following Walter Benjamin) as a project of human mastery over human relations with the non-human.
As has been discussed by Elana Gomel and more recently by Carlo Caduff, in the discursive and performative context of biosecurity, the “next pandemic” is not an apocalyptic or eschatological event. For whereas the apocalypse (in its many religious or secular forms) entails a temporality punctuated by the mutual, anti-dialectical immanence of an absolute end and an absolute (that is to say, counter-temporal) beginning, the “next pandemic” is instead underscored by what Gomel (2000: 409-10) has described as “an accumulation of repetitive episodes, deferring any kind of meaningful closure”.
If humanity’s apocalyptic being-in-the-world is always already a being for an eschaton, by contrast, human existence in expectation of the “next pandemic” unfolds in accordance to “a cyclical plot” (Gomel 2000: 413) of meaningless endlessness, which strips human annihilation of any redemptive quality, whilst abandoning being-human to the realm of a monotonous repetition of extinction deferrals.
What I want to propose here is an examination of the relation between epidemic ends and the pandemic End in terms of what I would like to coin as the “pandemic imaginary”. This does not refer to an imaginary pandemic, to the impact of really existing epidemics on civic or political imagination, or to historical ideas about pathogenic traits of the imagination. Nor however should the proposed notion of the pandemic imaginary be read within the enduring analytical indistinction between the imagined and the imaginary, or the imaginary and imagination (prevalent to anthropology and STS). Instead, the term here is intended to relate to the imaginary in an anthropological-materialist sense, in dialogue with the work of Cornelius Castoriadis.
The Dialectic Imaginary
In his Imaginary Institution of Society, Castoriadis famously distanced himself from psychoanalytic notions of the imaginary. Castoriadis proposed instead an analytic which saw the imaginary not as a reflective surface but as a productive principle of reality. This rejection of Lacanian metaphysics led to an understanding of the imaginary as something that, while on the one hand needs to “pass through the symbolic in order to be expressed” (Moore 2007: 60), on the other hand is not subsumed into it, but exceeds it, insofar as the symbolic “cannot […] without the capacity to ‘see in a thing what it is not, to see it other than it is’”.
This understanding of the imaginary is central to Castoriadis’ opposition to an ontology of determinacy – which, in simple terms, postulates that “to be is to be determined” (Gaonkar 2002: 6). In this sense, his notion of the imaginary seems to share with Jean Paul Sartre’s take on the imagination the crucial aspect that, as a capacity for seeing and acting on the world “as different from what [is]” (Gammeltoft 2014: 157), it forms not simply a “power of consciousness” but rather is “the whole of consciousness as it realizes its freedom” (Sartre 2001 : 216). However, by crucial difference to Sartre, Castoriadis’s approach conceptualised the imaginary both as what allows for the inter-institution of social and individual autonomy and as what lies at the heart of individual and social heteronomy. Indeed, as what allows the transformation of one form of political being into the other.
What I want to argue here, as a result, is that the pandemic imaginary plays an irrevocably dialectical role. On the one hand it enables us to think or conceptualise a future where human mastery over human/non-human relations has ceased to be humanity’s condition or destiny. It is, in other words, an imaginary that is institutive of post-human futures and, at the same time, of a present awakening insofar as, to use Adorno’s well-known phrase, “the absurd is presented as self-evident in order to strip the self-evident of its power”. Yet at the same time, the pandemic imaginary is also a set of instituted ideas insofar as it forms part of the state and capital sanctioned apparatus of preparedness, studied to great detail by Andrew Lakoff and Frédéric Keck. As such, it has an ideological function: that of disallowing the conceptualization of this post-human future in terms of a radically new potentiality; in other words, in terms of (at one and the same time) an alternate anthropogenesis and a new reality principle.
What renders the next pandemic a “preparable” catastrophe is precisely the fact that it is projected as something which is not (at) all-new. From preparedness exercises to pandemic movies and novels, the social impact of the “next pandemic” is depicted as a meltdown of private property and law-and-order. We can then say that the instituted or organic pandemic imaginary, identifying human suffering with the demise of bourgeois values, paints a dystopian picture where humanity is led “back” to an animalistic state of mutual predation. For this regime there can only be two imaginable futures for humanity: the capitalist present or a return to “the stone age”.
Hence whilst pandemic-borne human extinction forms an imaginary that holds the potential of indeterminacy, allowing us to see the human condition as other than is (a future without human mastery), it, at the same time, generates a vision of no imaginable alternative, the future either as what already is or as nothing. A vision of humanity having finally arrived at its proper plane of existence, which can either be maintained or lost, but in no way overcome – an anthropogenic telos; humanity as Being-in-itself.
What is then the role of “untimely ends” in the imaginary of human extinction?
The Work of the Untimely
It is important to consider that, in what following Priscilla Wald we may call Western outbreak narratives, epidemics operate on two interlinked temporal registers; first, a linear temporality structured around the beginning and end of an outbreak; second, a circular temporality structured around ideas such as dissipation, dormancy, recrudescence, and epidemic waves. Whereas the first temporal register emerged within historical narratives related to specific epidemic events, such as Thucydides’s plague of Athens, the second register has been the historical product of medical narratives, which primarily related epidemics with seasonal phenomena, as exemplified in the Hippocratic corpus.
Adapting these temporal frameworks and entangling them in various, often aporetic ways, over the past century the notion of infection initially unfolded in accordance to a compartmentalisation between, on the one hand, a cyclical temporality of epidemics, as a time proper to the non-human animal realm, and, on the other hand, a linear temporality, which by contrast applies to the impact of a disease in the human realm. In other words, animals and insects were conceived as “natural” reservoirs of infectious diseases; the proper realm of pathogens where they are reproduced through enzootic and epizootic cyclical chains of infection. By contrast, humans were seen as separate from this natural cycle of disease, and infected in a “linear” way. This was a schema that fostered ideas and affects crucial to the disciplinary apparatus of what Ruth Rogaski has called hygienic modernity insofar as it permitted utopian visions of a disease-free humanity qua a humanity separated efficiently enough from “nature”.
Zoonotic diagrams proliferating since the 1940s became emblematic of this schema of infection. Depicting the “reproduction” of disease amongst non-human animals through cyclical feedback loops and human infection in the form of linear arrows (a long-standing convention of pestiliential affliction), they brought together the two temporalities of infection, visualising their pathogenic intersection as a locus of biopolitical actionability (rat-proofing, DDT, extermination, etc). In the context of this temporal metaphysics of infection, the sudden end of an epidemic could be attributed to it having (or having been) returned to its “enzootic” phase of slow, low-mortality reproduction in some remote corner of the natural realm; sufficiently distanced from humanity to avert serious concern.
In recent years, however, the temporal metaphysics of infection have shifted under the gravitational force of a new doxa: emergence. No longer sufficient are the cycles and arrows of pestilence. No more the safe boundaries between animal and human, guarded by cybernetic thresholds of some epizootic transformation of quantity (mass animal kill-off) into quality (human infection). In the flux of infectious disease emergence, a new “entangled” topology of infection arises, best visualised perhaps by the increasingly ubiquitous spidergram: more an astrological chart of infectious influence and conjunction than an aetiological diagram. In this context the spontaneous, sudden end of an outbreak takes new proportions. For in the topology of infection defined by emergence, the secession of an epidemic is no longer seen as a retreat “back to nature”; an ontological return of disease to its proper place, providing a sense of security. Instead, it is something that generates anxiety insofar as it is suspected as part of a process which has nothing to do with the old idea that a disease simply runs its course; that it withers away, losses its power or dissipates. Seen instead as a stratagem, inherent to the being of the disease, this is now seen as a process that allows the latter to return not to “nature”, but instead to a state of being-unseen; in other words, to the imperceptible complexity of the folds and connections between “influences”, “drivers” and “factors” – visualised so aptly, in the case of spidergrams, the form of a cobweb of significance where the weaver, to use the Geertzean idiom, is forever suspended. This retreat of disease into the very “fabric” of infection, disallows human intervention on the basis of an opportune time (kairos). It is in this sense that these epidemic endings are configured and experienced not merely as premature but as untimely, precipitating not only an in situ epidemiological crisis, but, most importantly, a crisis as regards the survival of humanity as such.
“Untimely ends” can then be best approached as transformative topoi between the symbolic order of really existing epidemics and the pandemic imaginary, as a vision of the (biological and ontological) end of humanity. Rather than just bridging experience and anticipation, they create the conditions of possibility of transference between the thinkable and the unthinkable. Not mere “facts of consciousness”, chez Adorno, but repositories and at the same time catalysts of the dialectic between a post-human vision and the phantasmagoria of humanity’s Being-in-itself, “untimely ends” can come to be understood as organising consciousness vis-à-vis the enduring spectre of human extinction.
Christos Lynteris is a social anthropologist working on biopolitical and visual aspects of infectious disease epidemics. He is Senior Research Associate at CRASSH, University of Cambridge, and Principal Investigator of the ERC funded research project Visual Representations of the Third Plague Pandemic. His recent publications include The Spirit of Selflessness in Maoist China: Socialist Medicine and the New Man (Palgrave Macmillan 2012) and Ethnographic Plague: Configuring Disease on the Chinese-Russian Frontier (Palgrave Macmillan 2016). He has edited Cambridge Anthropology’s special section Epidemic Events and Processes (2014) and co-edited Visual Anthropology’s special issue Medicine, Photography and Anthropology.
During her pregnancy, Puthea went to a private maternity clinic for regular ultrasound exams. This clinic was one of the larger and more popular in Phnom Penh at the time (2010) and one that provided echo poar, color ultrasound services.[i] Puthea preferred color to black and white scans because she could see more detail. Following the doctor’s narration, she could recognize feet, legs, and face. Of course, she told me, every ultrasound, even color, has limits to its clarity. “You have to wait until delivery to see what the baby looks like.” Nonetheless, Puthea got one of her later exams at a public hospital, which offered only black and white scans. She did this so that she would be “in the system” there. Puthea could afford a private clinic—she worked in an upscale hotel and her salary, together with her husband’s, placed them in Cambodia’s growing middle class. Yet she chose the public hospital because it offered the best delivery services in Phnom Penh, and was able to handle emergency or complicated cases.
Puthea’s black and white ultrasound scans. The cat-like appearance can be seen in the top image.
As many women do, Puthea took a copy of her ultrasound report home with her, and showed the report and accompanying image to her auntie, Ming (see Figure 1). Ming was the matriarch of the family; she helped to raise Puthea and her brother, and owned a popular guesthouse near the riverfront. Puthea was telling me about her most recent experience with ultrasound imaging over dinner at my house, and at this point, she paused. “Ming looked at the scan, and said, ‘It [the fetus] looks like a cat!’” The cat comment was distasteful to Puthea, even though she couldn’t exactly disagree with her auntie. The fetus never looked this way in previous color scans. The black and white image was strange.
I was hooked by this story, which came to me in the midst of fieldwork on imaging practices. Puthea’s strategies for scanning and delivery were by then familiar—taking into account cost, medical expertise, facility, stage of pregnancy, kind of ultrasound image, among other things. She wanted information that others also wanted from ultrasound exams: information about the sex of the child and when is it due; whether it has its arms and legs, mean dai mean choeng, as people commonly put it; whether its head is up or down; the location of the placenta. However, her story of the cat-like appearance in the image was unusual, and it beckoned; it suggested a porousness of life among others—humans, images, animals, and machines. I wanted to talk to Ming about it. Puthea laughed at my curiousity, but agreed to join me.
Ming discusses the ultrasound image.
When we met in the open lobby of Ming’s guesthouse, calm and quiet in the afternoon heat, Ming stood by her original assessment: “Moel tov?” she asked me. “Perhaps you can you see it, too?” She showed the picture to me, and then to a relative who was visiting from Canada (see Figure 2). Puthea rolled her eyes impatiently. “Or, perhaps the doctor was not so good,” she said. “Or the machine was old and unable to produce good pictures.” Ming had other ideas: perhaps it was because Puthea loved her small black cat too much; she always had it on her lap, petting it, talking to it. And maybe, too, it was because Puthea did not put up enough pretty pictures on the wall to influence the qualities of the fetus in a different direction. Surrounding oneself with nice images could help bring out vitality, health, and beauty.
Puthea was caught between irritation with her auntie’s “superstitious” line of thinking and feeling somewhat under the sway of cultural logics that connect practices of pregnant women with the physicality of the fetus. Here, visual and affective practices—petting the cat and perhaps loving it too much, not looking at pretty pictures—have material effects. In everyday Buddhist philosophy, conception involves the merger of a new physical form with a consciousness or spirit that has lived previous lives; the fetus is both developing and already developed. Pregnancy is a liminal time where a pregnant woman’s actions can influence the fetus—its form, its nature.[ii] But one need not be committed to Buddhist notions of rebirth and impermanence (or to process ontology) to grasp the plasticity of prenatal life.
This story is not only about the fetus. It is also about the ultrasound image. Ming suggested that Puthea’s actions and affect caused the fetus to look like a cat in the black and white image. Previous color images had not brought out these qualities. Ming’s reading made me wonder: how can an image intervene onto the object, making it come out better or worse, fixing its fate? People look to ultrasound imaging for clues about how the fetus is developing and what its nature might be. Perhaps they also hope that imaging can shift the process of fetal development, just a little?
Exceptional stories have an openness and unruliness to them. They require that we think across, diagonal, in staccato leaps. As I have wondered about transforming Puthea’s story into a case, I have looked to quite different conversations for help. Work on “maternal impressions” could help me think about how thoughts, feelings, and actions of pregnant women affect the physiognomy of fetuses.[iii] Work on color can unravel a bit more about color as substance, and as part of postcolonial flows of ornament and vibrancy.[iv] But then, what about black and white? Some consider black and white to be linked to a period of Cambodia’s past, to death, to a notorious set of images, even.[v] Work on portrait photography could help me think about aesthetic practices of relating to images.[vi] For example, concerning photo retouching in Ho Chi Minh City, Nina Hien writes: “Many people considered the photograph as not only as an index of the subject, but also as a live connection to it. Following a popular Vietnamese saying, ‘fixing the image, [could] fix the fate’” (2014: 68). This suggests that images can affect their referents and their beholders; is this partly what was at stake for Puthea and Ming?
Khmer has a good expression for stories like these: kuor aoy chngual (គួរអោយឆ្ងល់) a story one should wonder about, a story that is surprising, curious, hinting at a different reality than one is used to. Perhaps wonder is what motivates ethnographic case-work, akin to intrigue in medical work.[vii] Exceptional cases do require unusual and unruly accomplices. The work of transforming a story into a case is akin to ‘fixing’ the story, making it come out better or worse. Assembling accomplices shapes what the story is and can be. As I see it, one of the lessons of Puthea’s ultrasound scan is about life as process. Ultrasound is a technique for grasping hold of life to get a sense of what it is and what it may be. Another lesson has to do with the work of images. Cases, like the ultrasound image in this story, may intervene in myriad ways. They intervene on the objects they depict—bringing them out better, fixing certain qualities. They intervene on the readers—how readers sense, think, attune.
There are ways that exceptional stories fix ethnographers, too. I did not hear about another cat-like scan, yet after talking to Puthea and Ming, I listened more closely for image stories. I asked different questions. I worked to make this story into an exemplary ethnographic case. Can it bear this weight? Perhaps. If representations fix—whether with words, images, or as cases—that fixing is a process, impermanent yet consequential. Fixing the image fixes the fate. Fixing the case shifts what is possible.
Jenna Grant is Assistant Professor of Anthropology at the University of Washington, where she teaches anthropology of medicine, technology, visuality, and Southeast Asia. She is currently working on a book manuscript titled Seeing clearly: Medical imaging and its uncertainties in Phnom Penh. The book explores histories and contemporary practices of medical imaging in Cambodia’s capital. Jenna also works on projects with Medicine Anthropology Theory (MAT), and Visual & New Media Review, a blog of Cultural Anthropologyonline.
[i] “Color” ultrasound services can refer to Doppler imaging, 3D imaging, or a background tint or platform on 2D images. Puthea was talking about color 2D images. French and Khmer in the expression echo poar indicate the mixtures that make up Cambodian medicine: echo is from the French echographie for ultrasound and poar is the Khmer term for color. A great history of this medicine is Sokhieng Au (2011) Mixed Medicines: Health and Culture in French Colonial Cambodia. University of Chicago Press.
[ii] See Ang, C (1982) Grossesse et Accouchement au Cambodge: Aspects Rituels. ASEMI 13(1-4): 87-109.
[iii] On maternal impressions see, for example: Morgan, L (2003) Embryo Tales. In Franklin, S and Lock, M (Eds.) Remaking Life and Death: Toward and Anthropology of the Biosciences. Pp. 261-229. School of American Research Press; Stafford, B (1991) Body Criticism: Imaging the Unseen in Enlightenment Art and Medicine. MIT Press; or Taylor, J (2008) The Public Life of the Fetal Sonogram: Technology, Consumption, and the Politics of Reproduction. Rutgers University Press.
[iv] See Galt, R (2011) Pretty: Film and the Decorative Image. Columbia University Press; or Taussig, M (2009) What Color Is the Sacred? University of Chicago Press.
[v] On the Tuol Sleng photographs, see French, L (2002) Exhibiting Terror. In Bradley, MP and Petro, P (Eds.) Truth Claims: Representation and Human Rights. Pp. 131-55. Rutgers University Press.
[vi] I look to Hien, N (2014) Photo Retoucher. In Barker, J, Harms, E, and Lindquist, J (Eds.) Figures of Southeast Asian Modernity. Pp. 67-69. University of Hawai’i Press; Pinney, C (2003) Notes from the Surface of the Image: Photography, Postcolonialism, and Vernacular Modernism. In Pinney, C and Peterson, N (Eds.) Photography’s Other Histories. Pp. 202-220. Duke University Press; and Strassler, K (2010) Refracted Visions: Popular Photography and National Modernity in Java. Duke University Press.
[vii] On intrigue as a motivation for diagnostic work in medicine, see Saunders, B (2008) CT Suite: The Work of Diagnosis in the Age of Invasive Cutting. Duke University Press.
Sabine Arnaud’s On Hysteria: The Invention of a Medical Category Between 1670 and 1820 focuses on the socio-medical category before its better-known (and more heavily studied) late nineteenth century instantiations, not to trace the prehistory of hysteria from the seventeenth to early nineteenth centuries, but in order to demonstrate how hysteria takes unexpected form during these earlier epochs. The following commentaries draw out the historical and literary qualities of Arnaud’s study beautifully, and demonstrate how far Arnaud’s insight that this malady was as dependent upon writing and narrative strategies as it was the status of medicine extends. The commentaries are followed by a reply from the author. We hope you enjoy.
What Does Novelty Really Mean? Thinking About Centuries and Disciplines
University of Oxford
Medicine, The Age of Sensibility, and Sociable Knowledge
University of Turin
Researchers at MIT have launched Moral Machine, a web project to help gauge human perspectives on “moral decisions made by machine intelligence.” The project comes in the wake of a new Science study regarding the complicated tangle of ethics and driverless cars, where the classic ‘trolley problem’ has been scaled up for new technology. Scientific American, weighing in, writes that real autonomy for new vehicles hinges not on manufacturer issues but on the moral and ethical dilemmas inherent in the new technology. Consumer demand is high and climbing. Mainstream discussions, however, continue to black box the ethical and moral within larger questions about safety systems. The Atlantic traces the driverless car back to the 1920s, where desire was driven by “the promise of improved safety.” Similarly, Volvo’s ongoing Future of Driving survey, while heavy on questions of safety and trust, makes no mention of whether or not driverless vehicles have ethics or ought to be moral. Today’s news, that BMW has secured partnerships with Mobileyes and Intel, ensures that the debates around autonomous vehicles are sure to intensify.
MIT Technology Review has written about Kevin Esvelt’s campaign to regulate gene drives in order to avoid “doomsday” outcomes. Esvelt’s vision for a safe gene drive is distinctly caught up in moral projects. A safe gene drive–one built around transparency and community input–is “a way to rectify what [Esvelt] considers a larger failing of the universe, which is that evolution itself “has no moral compass.”…Gene drives, by giving humankind the ability to fine-tune the battle for survival, could make the world a more just place.” Esvelt’s gene drive concerns are echoed in many of the related debates over CRISPR, which is touted by many as something of a magic bullet for everything from food scarcity to cancer treatments. Where one might assume that tighter control of gene editing technology is the answer to fostering ethical distribution of its benefits, other geneticists, like Esvelt, say “public engagement is the most important factor in determining how genetic science will and should be practiced in America.”
Over at Motherboard, the medicalization of love is on the table in the form of real-life love (and anti-love) potions. Now that pharmaceutical interventions like MDMA or intranasal oxytocin may prove useful in fostering or enhancing feelings of love, the question becomes whether such practices are ethical. Issues such as consent and overtreatment are valid, and yet the author concludes “sometimes, it’s better to just break up.” Modafinil, the performance-enhancing nootropic drug, also conjures related bioethical quandaries. If the drug becomes widely commonplace in the workplace, for example, how might one discuss issues of coercion, competition and consent? So-called “smart drugs” also trouble notions of equity, a well-worn criticism of biomedical enhancement measures. Tech Insider argues, “if wealthy people can easily afford cognitive enhancement but no one else can, that’s likely to create an even more unequal society.”
Finally, technologist Maciej Cegłowski, in a talk on moral economies given at the recent SASE conference in Berkeley, had some important and timely things to say: “When we talk about the moral economy of tech, we must confront the fact that we have created a powerful tool of social control. Those who run the surveillance apparatus understand its capabilities in a way the average citizen does not. My greatest fear is seeing the full might of the surveillance apparatus unleashed against a despised minority, in a democratic country. What we’ve done as technologists is leave a loaded gun lying around, in the hopes that no one will ever pick it up and use it.”
More links of interest:
“In the Eye of the Coder” – Real Life
“My Four Months as a Private Prison Guard” – Mother Jones
“Introducing the Public Anthropology Institute” – Savage Minds
“Bad Intelligence” – The Nation
We have three special issues to conclude our highlighting of new articles in June! Here they are:
- Surveillance and Embodiment: Dispositifs of Capture, in Body & Society
- Perspectives on patienthood, practitioners and pedagogy, in Medical Humanities
- Childbirth and Reproduction, in Sociology of Health & Illness
And, if you’re looking for more to read, the first part of this month’s roundup is here.
Surveillance and Embodiment: Dispositifs of Capture
Martin French, Gavin JD Smith
This article provides an introduction to a special issue of Body & Society that explores the surveillance-embodiment nexus. It accentuates both the prevalence and consequence of bodies being increasingly converted into ‘objects of information’ by surveillance technologies and systems. We begin by regarding the normalcy of body monitoring in contemporary life, illustrating how a plurality of biometric scanners operate to intermediate the physical surfaces and subjective depths of bodies in accordance with various concerns. We focus on everyday experiences of bodily intermediation by surveillant dispositifs, and consider the broader political, epistemological, and ontological significance of these processes. We then point to the substantive intersections and divergences existing between body and surveillance studies. We conclude with an overview of the five articles appearing in this special issue. We describe how each contribution creates a template for imagining what a body is, and what a body might become, in a culture defined by proliferating data sharing behaviours, systems of codification, and practices of intermediation.
In this article I consider how our experiences of bodily privacy are changing in the contemporary surveillance society. I use biometric technologies as a lens for tracking the changing relationships between the body and privacy. Adopting a broader genealogical perspective, I retrace the role of the body in the constitution of the modern liberal political subject. I consider two different understandings of the subject, the Foucauldian political subject, and the Lacanian psychoanalytic subject. The psychoanalytic perspective serves to appraise the importance of hiding for the subject effects of excessive exposure to the Other’s gaze. I conclude to the importance of the subject’s being able to hide, even when it has nothing to hide. By considering these two facets of subjectivity, political and psychic, I hope to make sense of our enduring and deeply political passionate attachment to privacy.
Big Data Surveillance and the Body-subject
Kirstie Ball, MariaLaura Di Domenico, Daniel Nunan
This paper considers the implications of big data practices for theories about the surveilled subject who, analysed from afar, is still gazed upon, although not directly watched as with previous surveillance systems. We propose this surveilled subject be viewed through a lens of proximity rather than interactivity, to highlight the normative issues arising within digitally mediated relationships. We interpret the ontological proximity between subjects, data flows and big data surveillance through Merleau-Ponty’s ideas combined with Levinas’ approach to ethical proximity and Coeckelberg’s work on proximity in the digital age. This leads us to highlight how competing normativities, and normative dilemmas in these proximal spaces, manipulate the surveilled subject’s embodied practices to lead the embodied individual towards experiencing them in a local sense. We explore when and how the subject notices these big data practices and then interprets them through translating their experiences into courses of action, inaction or acquiescence.
HIV, Viral Suppression and New Technologies of Surveillance and Control
Adrian Guta, Stuart J Murray, Marilou Gagnon
The global response to managing the spread of HIV has recently undergone a significant shift with the advent of ‘treatment as prevention’, a strategy which presumes that scaling-up testing and treatment for people living with HIV will produce a broader preventative benefit. Treatment as prevention includes an array of diagnostic, technological and policy developments that are creating new understandings of how HIV circulates in bodies and spaces. Drawing on the work of Michel Foucault, we contextualize these developments by linking them to systems of governance and discursive subjectivation. The goal of this article is to problematize the growing importance of viral suppression in the management of HIV and the use of related surveillance technologies. For people living with HIV, we demonstrate how treatment-as-prevention’s emphasis on individual and collective viral load is transforming the performative dimensions of embodied risk, affect, subjectivity and sex.
Today’s bodies are akin to ‘walking sensor platforms’. Bodies either host, or are the subjects of, an array of sensing devices that act to convert bodily movements, actions and dynamics into circulative data. This article proposes the notions of ‘disembodied exhaust’ and ‘embodied exhaustion’ to conceptualise processes of bodily sensorisation and datafication. As the material body interfaces with networked sensor technologies and sensing infrastructures, it emits disembodied exhaust: gaseous flows of personal information that establish a representational data-proxy. It is this networked actant that progressively structures how embodied subjects experience their daily lives. The significance of this symbiont medium in determining the outcome of interplays between networked individuals and audiences necessitates that it is carefully contrived. The article explores the nature and function of the data-proxy, and its impact on social relations. Drawing on examples that depict individuals engaging with their data-proxies, the article suggests that managing a virtual presence is analogous to a work relation, demanding diligence and investment. But it also shows how the data-proxy operates as a mode of affect that challenges conventional distinctions made between organic and inorganic bodies, agency and actancy, mortality and immortality, presence and absence.
Reading the Human Brain: How the Mind Became Legible
The human body was made legible long ago. But what of the human mind? Is it possible to ‘read’ the mind, for one human being to know what another is thinking or feeling, their beliefs and intentions. And if I can read your mind, how about others – could our authorities, in the criminal justice system or the security services? Some developments in contemporary neuroscience suggest the answer to this question is ‘yes’. While philosophers continue to debate the mind-brain problem, a range of novel technologies of brain imaging have been used to argue that specific mental states, and even specific thoughts, can be identified by characteristic patterns of brain activation; this has led some to propose their use in practices ranging from lie detection and security screening to the assessment of brain activity in persons in persistent vegetative states. This article reviews the history of these developments, sketches their scientific and technical bases, considers some of the epistemological and ontological mutations involved, explores the ecological niches where they have found a hospitable environment, and considers some implications of this materialization of the readable, knowable, transparent mind.
Editorial: Perspectives on patienthood, practitioners and pedagogy
Ciara Breathnach, Brendan D Kelly
This issue brings together scholars of philosophy, medicine, history, art history and psychiatry to consider the theme of ‘patienthood’, to ponder what being a patient means in historic and modern terms, to discuss the practitioner/patient relationship, to contribute to pedagogy and ongoing debates in the medical humanities. By focusing on two main themes, narratives and pedagogy, this issue builds on the advances and responds to the ‘clarion calls’ of the previous special edition, which asked what critical medical humanities might represent.
Patienthood in medieval Tuscany: beliefs and cures
This paper focuses on intersections of holy and sick bodies in the Tuscan Middle Ages to examine how the faithful accessed miraculous cures from contact with, or belief in, the relics of the saints. Rather than examine the relationship between the long dead martyrs (whose relics were abundant), however, it will look at the relationship between relatively recent saints and their devotees. The miracles discussed are traditional—that is, they are found in the lives of many saints and are not exceptional. It is hoped, however, that by concentrating on Tuscany, some insights can be secured on the relationship between Tuscan individuals of the late middle ages and those of their community who were recognised, either officially or through vox populi, as saints.
Ireland’s only published witchcraft pamphlet, written by Daniel Higgs, The Wonderful and True Relation of the Bewitching of a Young Girle in Ireland, What Ways she was Tormented, and a Receipt of the Ointment that she was Cured with (1699), works within the confines of late seventeenth-century demonology, while upholding the patriarchy of the fledgling Protestant Ascendancy. More importantly, it provides rare insight into early modern Protestant witchcraft beliefs, highlights the limits of contemporary medical care and provision and details the pathways of self-medication people resorted to. Higgs’ method of promoting self-medication as a cure to bewitchment and demonic possession was based on a remedy described in an obscure Renaissance magical text. To promote his ‘cure’ the pamphlet included a particularly vitriolic critique of the established Irish medical profession, as self-regarding and incompetent witchcraft deniers. This article uses Higgs’ pamphlet to explore the limits to/of medical knowledge in early modern Ireland and Europe.
Searching for the patient’s voice in the Irish asylums
Brendan D Kelly
The history of mental healthcare in Ireland ends to focus on the histories of institutions and development of mental health legislation. Attention has also been devoted to clinical records, with all of their interpretative and narrative complexities. In both the historiography and archives, however, patients themselves remain remarkably elusive, their voices astonishingly distant. In countries other than Ireland, there have been more extensive analyses of patients’ letters, journals and first-person accounts of hospitalisation and treatment. In Ireland, there is real difficulty accessing such accounts, if they exist, especially from the 1800s. Asylum and hospital records offer some assistance in understanding patients’ concerns and, arguably, the symptoms recorded in asylum records (eg, delusions) provide further windows into patients’ minds. Methodological challenges abound, but while patients’ voices may remain largely unknown at present, they are certainly not unknowable. This paper posits that we just need to listen harder and, perhaps, listen better.
Unwieldy by nature, unsolicited diaries and their study, this article contends, have the potential to offer deeper insights into the experience of illness but only if they receive due consideration from scholars. This article uses a series of historic diaries to examine the concept of ‘professional patienthood’ or being a full-time patient, and, while it found the narrative medicine approach to be very useful, it also found it limiting. The recent methodological trends in biomedicine and social sciences towards structured mechanisms like questionnaires—surveying and evaluating performance, satisfaction and experience—can only go so far. This article makes a case for the unsolicited, the unorthodox and the unstructured.
There is, I think, a resonance between being a patient and having a greater sense of wonder at things in the world around us: a sense of wonder at things that become, briefly and intermittently, intensely and newly present. As with experiences of art, or of humour, or of love, or of strong ethical motivation, in experiences of wonder it seems to me that we live more intensely. And if it is a good thing to live, then perhaps living intensely may, while it lasts, be an intensely good thing. In this paper, I will try to reflect on this resonance within my personal experience, within the context of a number of related undertakings. These are as follows:
- to argue that there is something enduringly and inescapably wonderful about the challenge facing the clinical medical practitioner;
- to disclose something personal about myself as a patient within primary care;
- to recognise the wonder of our embodied state;
- to review the importance of a sense of wonder for doctor and patient alike;
- to argue for a reassessment—and a reassignment—of the moral centre of gravity of clinical medicine;
- to consider whether an ethics grounded upon wonder is compatible with virtue ethics
- to explore aspects of wonder and suggest future research;
- to sketch out how a sense of wonder at our mortality—our ‘finitude’—helps us all in acknowledging and responding to ‘the lives of others’.
These undertakings cumulatively constitute the ‘invitation to wonder’ that I would like to issue.
In defence of utility: the medical humanities and medical education (open access)
The idea that a study of the humanities helps to humanise doctors has become a leitmotif within the field. It is argued that the humanities (especially, literature) help to foster insights beyond those provided by biomedical training. Healthy young medics, it is claimed, can thereby gain significant insights into patienthood, and obtain important skills that may be valuable for their professional life. But the instrumentality of the humanities is not the only justification proffered for its inclusion in medical curricula. In this paper I critically examine the two overarching justifications recurrently cited in the mainstream literature—namely, (1) the instrumental worth and (2) the intrinsic value of the medical humanities in educating doctors. Examining these theses (and focusing on the views of a leading medical humanities scholar) I show that the bifurcation into instrumental versus non-instrumental justifications is not supported by the argumentation. Instead, I find that the particulars of the supposedly intrinsic justifications amount to an unambiguously instrumental defence of the humanities. Contextualizing the present investigation to probe further, I describe a long history of debate about the role of the humanities in British education and find that it rests on unsupported dichotomies (utility vs non-utility, theoretical vs applied, educated vs trained). I conclude that the medical humanities’ manifesto would be more intellectually honest and coherent, and provide a more robust defence of its value in medical education, if it chose to embrace a wholly instrumental rationale for its role.
Rethinking the medical in the medical humanities
Desmond O’Neill, Elinor Jenkins, Rebecca Mawhinney, Ellen Cosgrave, Sarah O’Mahony, Clare Guest, Hilary Moss
To clinicians there are a number of striking features of the ever-evolving field of the medical humanities. The first is a perception of a predominantly unidirectional relationship between medicine and the humanities, generally in terms of what the arts and humanities have to offer medicine. The second is the portrayal of medical practice in terms of problems and negativities for which the medical humanities are seen to pose the solution rather than viewing medicine as an active and positive contributor to an interdisciplinary project. Paradigms that fail to recognise the contributions of medicine and its practitioners (including students) to the medical humanities, this paper argues, will continue to struggle with definition and acceptance. This paper explores the possibilities for advancing the medical humanities through recognition of the contribution of medicine to the humanities and the importance of engaging with the arts, culture and leisure pursuits of doctors and medical students. Our research shows the richness of cultural engagement of medical students, their broad range of cultural interests and their ability to contribute to research and scholarship in the medical humanities. Mutual recognition of strengths, weaknesses and differences of scholarly approach is critical to successful development of the enterprise. Recognising and building on the interests, sympathies and contributions of medicine and its practitioners to the medical humanities is a fundamental component of this task. Future directions might include introductory courses for humanities scholars in aspects of healthcare and medicine.
Medical humanities: a closer look at learning
A Patterson, D Sharek, M Hennessy, M Phillips, S Schofield
The inclusion of medical humanities with medical curricula is a question that has been the focus of attention for many within the evolving field. This study addressed the question from a medical education perspective and aimed to investigate what students at Trinity College Dublin learned from participating in a short medical humanities student-selected module in their first year of an undergraduate medical programme. A total of 156 students provided a written reflection on a memorable event that occurred during their student-selected module. The reflections were analysed using the Reflection Evaluation for Learners’ Enhanced Competencies Tool (REFLECT) and through qualitative thematic analysis of the written reflections. Evidence of learning from the REFLECT quantitative analysis showed that 50% of students displayed higher levels of reflection when describing their experience. The reflection content analysis supported the heterogeneous nature of learning outcome for students, with evidence to support the idea that the module provided opportunities for students to explore their beliefs, ideas and feelings regarding a range of areas outside their current experience or world view, to consider the views of others that they may have not previously been aware of, to reflect on their current views, and to consider their future professional practice.
Editorial: Childbirth and Reproduction
Gareth Williams and Ian Rees Jones
The sociology of childbirth emerged in the 1970s largely as a result of influences from outside sociology. These included feminism, maternity care activism, the increasing medicalisation of childbirth, and evidence-based health care. This paper uses the author’s own sociological ‘career’ to map a journey through four decades of childbirth research. It demonstrates the importance of social networks and interdisciplinary work, particularly across the medical-social science divide and including cross-cultural perspectives, argues that the study of reproduction has facilitated methodological development within the social sciences, and suggests that childbirth remains on the periphery of mainstream sociological concerns.
Researchers have deemed medicalisation a ‘gendered’ theory, yet the incorporation of men and masculinity in medicalisation literature is sparse. Recently, however, medicalisation scholarship has begun studying men. This burgeoning literature heavily emphasises sexuality and is beginning to focus on medicalised masculinities in which traits associated with masculinity are deemed a health risk. Such research has demonstrated how masculinities shape men’s lived experiences of health, but how does health itself shape masculinity? I explore this question using the case of infertility. Through thirty in-depth interviews, I find that men use medicine as a way to achieve rather than diminish their sense of masculinity in the feminised context of reproduction. By perpetuating the stereotype that infertility is a woman’s problem, the medical establishment has caused men to not necessarily see themselves as infertile. Additionally, even if men do claim the infertility status, they do not perceive it as negative. The legitimating effects of medicalisation objectify the ailment and separate its connection with sexuality. In centring men’s voices, the study not only reveals men as active players in the reproductive process, but also incorporates them into understandings of medicalisation.
‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis
Nicky Hudson, Lorraine Culley, Caroline Law, Helene Mitchell, Elaine Denny, Nick Raine-Fenning
The concept of biographical disruption has been widely applied in sociological explorations of chronic illness and has been subject to much theoretical scrutiny, reflection and development. However, little attention has been given to the impact of biographical disruption beyond the individual level. This article explores the concept from a dyadic perspective, utilising data from an exploratory, qualitative study (ENDOPART) that investigated the impact of endometriosis on women and their male partners. In total, 22 couples participated in in-depth, semi-structured, face-to-face interviews. The women and their partners were interviewed separately and, in most cases, simultaneously, by different interviewers. Data analysis was informed by an interpretivist relational approach, foregrounding the meanings participants applied to their experiences, treating interviews as accounts, and exploring partners’ accounts in relation to one another. Two analytic approaches generated several themes for exploration in the context of the concept of biographical disruption: sex and intimacy; planning for and having children; working lives and social lives. The article argues that biographical disruptions are social and inter-relational processes and discusses how couples living with endometriosis negotiated these disruptions, how they were appraised and how lives and expectations were revised as a result.
‘You’re looking for different parts in a jigsaw’: foetal MRI (magnetic resonance imaging) as an emerging technology in professional practice (open access)
Kate Reed, Inna Kochetkova, Susan Molyneux-Hodgson
Magnetic resonance imaging (MRI) was first introduced into clinical practice during the 1980s. Originally used as a diagnostic tool to take pictures of the brain, spine, and joints, it is now used to visualise a range of organs and soft tissue around the body. Developments in clinical applications of the technology are rapid and it is often viewed as the ‘gold standard’ in many areas of medicine. However, most existing sociological work on MRI tends to focus on the profession of radiology, little is known about the impact of MRI on a broader range of clinical practice. This article focuses on MRI use in pregnancy, a relatively new application of the technology. Drawing on empirical research with a range of health professionals (from radiologists to pathologists) in the North of England, this article asks: how do different types of health professionals engage with the technology and to what end? It will argue that MRI use in pregnancy offers an increasingly important piece of the diagnostic jigsaw, often acting as a bridging technology between medical specialties. The implications of this will be explored in the context of broader sociological debates on the ‘visualisation’ of medicine and its impact on professionals.
Families dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1
Daniele Carrieri, Hannah Farrimond, Susan Kelly, Peter Turnpenny
Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family – bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a ‘condition without parameters’. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.
University of Chicago Press, 2014, 232 pages
In her thoroughly engaging new book, Not Tonight: Migraine and the Politics of Gender and Health, Joanna Kempner argues that, despite a new clinical paradigm through which migraine has been transformed from a psychogenic to a neurobiological disorder, the condition remains “an opportunity to make jokes about moral character” (2). Grounding this assertion in the concept of a “legitimacy deficit,” (9) i.e., a gap between what sufferers experience and what biomedicine and broader society formally recognize as illness, Not Tonight demonstrates the synergistic roles that gender and perceptions of moral character can play in the lived experience of a disease condition, including its clinical management and representation. At its core, the book reveals how the virtual incompatibility between high moral character and a feminine gender impedes the social and clinical apprehension of migraine as a “real” disease condition.
Not Tonight is a fairly wide-ranging text. Across five chapters (each of which stand alone on their own merits), Kempner presents a set of interlocking variables through which the condition of migraine has thus far been understood: its social and clinical history; recent pharmaceutical advertising campaigns; online advocacy and activism; and the recent neurobiological turn in migraine care. In addition to online forums and blogs, much of Kempner’s fieldwork took place at clinical conferences where (mostly female) patients—as proxies for the specialty of headache medicine—were routinely maligned by clinicians, and where the neurobiological paradigm at the heart of her analysis has become institutionalized. In each of these spaces, Kempner highlights the gendered dimensions of migraine’s legitimacy deficit, voiced by clinicians as a “conceptual slippage between the categories of ‘psychosomatic patients’ and ‘women’” (55). Not Tonight illustrates how, in this context, both patients and providers have been seduced by the brains that are now “everywhere” (51) in migraine research and management: patients enthusiastically embrace the “migraine brain” as a “tangible object through which symptoms can be understood and … manipulated” (98-9) while clinicians enjoy the heightened (and more masculinized) status of treating an “organic disease” that is distinct from the “neurotic symptoms of women” (54).
Analyses of health conditions that, like migraine, are disproportionately experienced by women, often follow one of two trajectories: delineating how the condition itself is imbued with gendered characteristics, or how gender as a system contours the prevalence or lived experience of a disease or diagnosis. Not Tonight keeps its focus on the former dynamic, unpacking “just how feminized our understanding of migraine is” (155). In her analyses of pharmaceutical ads (Chapter 3) and cluster headache (Chapter 5), a condition related to migraine but with which more men are diagnosed, Kempner is an astute cultural diagnostician, and provides readers with a wealth of textual evidence of the gendered lenses through which migraine is largely perceived. A print advertisement, for example, in which a drug’s efficacy is measured by a woman’s ability to return to nurturing work, alongside descriptions of cluster headache as violent enough to bring “‘even the strongest of men to their knees’” (135) evince the ways that both variations of migraine are marked—indeed, almost constituted—by gender transgression.
More accurately, what Kempner expertly homes in on is how migraine patients both exceed and conform to gendered expectations: women whose headaches render them unavailable for maternal care and heteronormative sexual work still “retreat” (138) to quiet spaces where they can malinger, while men whose cluster headaches hamper their ability to work cope with the pain by violently banging their heads against a wall or floor. What these descriptions reveal is that because migraine does not map neatly onto the gendered bodies of patients, sociomedical narratives about sexed biology are recruited to do so in its place. From the high-maintenance “diva” brain (71) of a “Migraineur” (94) to the “leonine facial features” (146) of a cluster patient, descriptions of migraine adhere firmly to conventional stories about sexual difference; empirical evidence must then be contorted around these narratives in order to make clinical sense. What we see here is not only how flawed and even misogynist assumptions about sexual difference [https://genderedinnovations.stanford.edu/] can contribute to substandard care, but also how the specialty of headache medicine helps to produce the “biofictional” (Preciado 2013) categories of “men” and “women.”
Not Tonight grapples with a second puzzle—how illegitimacy clings to migraine, despite new neurobiological causal narratives—by investigating several spaces where legitimacy and moral character are actively negotiated. In online forums and other biosocial spaces, advocates promote a neurobiological understanding of migraine by “talking about their brains as entities that exist separately from themselves” (100). For many of these experts (all of whom are also patients and almost all of whom are women), the matter of migraine’s moral rehabilitation is simply one of time and education, of “pick[ing] up the slack” (88) in their medical care while providers improve their clinical skills. But the stickiness of migraine’s illegitimacy is made palpable via its consistent ability to disrupt the lives of family, friends, and coworkers who are more easily soothed by extant narratives about “perfectionist” or “stressed out” personalities than they are by biological disease. Kempner’s self-identification as a migraine sufferer is especially effective here, as she reflexively punctuates her analysis with personal and often poignant anecdotes regarding the steady streams of advice afforded migraine sufferers to, in essence, “chill out.” Clinicians’ low investments in managing the disorder’s non-neurological dimensions complement these tendencies, leading many sufferers to over-identify with narratives that prioritize the parts of their disease for which they bear little to no responsibility.
Kempner convincingly demonstrates that migraine’s legitimacy problems are significantly inflected by gender and the book alludes to how this gendered legitimacy deficit relates to discussions of sex-linked neurobiological difference; how, in other words, the migration of migraine from women’s “heads” to their “brains” might reify rather than neutralize presumptions about hierarchical sexual difference. Indeed, and as feminist critiques of neuroscience have consistently shown (Fine 2011, Jordan-Young 2011), the evidence supporting sex-specific brains is often specious and tautological: assumptions about the categorical stability of male and female distort research design, results, and claims that then systematically impose a binarized and essential reality to sex and gender (Springer, Stellman, and Jordan-Young 2012). In the final pages of the book, Kempner argues that “in a patriarchal society … the idea that society ought to safeguard and maintain women’s breasts may be more easily embraced than the parallel notion that women’s brains require the same sort of protection” (167). True as this assertion might be, it stops short of recognizing that as long as female and male are understood as biologically distinct entities, a class of “protected” women’s brains will likely incur the cost of a subordinated neurobiological status.
Focusing on the feminization of migraine, Not Tonight does not contextualize the disorder’s distribution within other forms of gender asymmetry (in the US or elsewhere), and Kempner refrains from speculating on what might make women more likely to be diagnosed (hormones; unequal distributions of pay and domestic labor; high rates of sexual and domestic violence). Indeed, Kempner appears to take gender asymmetry as a given and does not describe how it works for afflicted women beyond their medical encounters, how its structural tenacity frames the condition, or how alternative social arrangements might lead to different distributions of migraine’s symptoms. Though she acknowledges that “gender is [a] persistent” (157) cultural dynamic, and that one researcher has established a connection between child abuse and the neurobiological plasticity through which migraine might be acquired (104), these aspects of the condition remain largely unexplored. And though she repeatedly refers to a demonstrated relationship between poverty, race, and migraine, there is little analysis about the role these factors may play in the risk for or development of the disorder.
These concerns aside, Not Tonight makes a number of important contributions, including an excellent update on migraine’s character (the whole body is affected; it doesn’t always involve a headache) and current treatment approaches, and a thoughtful discussion of migraine’s “emergent politicized collective identity” (101). Though Kempner argues that a full embrace of the (compartmentalized) “migraine brain” denies advocates “the ability to politicize the[ir] disease” (104), she also demonstrates that their routine deployment of the term “disease” communicates both a biological reality and a lived experience, including how they are rendered suspect by providers, family, and broader society. And though less is discussed regarding sex and sexuality than the title might suggest, Kempner’s early discussion of sexual activity as an effective pain reduction mechanism (20), rather than a gendered avoidance of heterosexual expectations, serves to remind us that “cultural stereotypes may be more resilient than … biological knowledge” (157): “That … studies [about sexual activity] are done at all,” she argues, “is testament to the power of […] clichés about women, sex, and migraine …” (20). With assertions like this, Not Tonight allows us to see how gender and illegitimacy intersect, and how the character of people with migraine, most of whom are women, is questioned in ways that render their diagnosis and treatment less important. Migraine may well be an opportunity to make jokes about moral character. So, as it turns out, is being a woman.
Christine Labuski is an anthropologist and assistant professor of Women’s and Gender Studies at Virginia Tech, where she also directs the Gender, Bodies & Technology initiative. Her book It Hurts Down There: The Bodily Imaginaries of Female Genital Pain, tracks the emergence and physiological realization of vulvar pain conditions in the contemporary United States.
Fine, Cordelia. 2011. Delusions of gender: How our minds, society, and neurosexism create difference. New York: W.W. Norton.
Jordan-Young, Rebecca. 2011. Brain storm: The flaws in the science of sex differences. Cambridge: Harvard University Press.
Preciado, Paul B. 2013. Testo junkie: Sex, drugs, and biopolitics in the pharmacopornographic era. New York: The Feminist Press.
Springer, Kristen W., Jeanne Mager Stellman, and Rebecca Jordan-Young. 2012. Beyond a catalogue of differences: a theoretical frame and good practice guidelines for researching sex/gender in human health. Social Science & Medicine, 74(11): 1817-1824.
“I was willing to die,” Terri told me, “I just didn’t want to have another caesarian.” She referred to her vaginal birth after three c-sections (a VBA3C), which took place at home, since no Cape Town hospital would allow her what is termed a trial of labour – an attempt at vaginal birth – for fear of uterine rupture. It is widely agreed that the risks for planned VBACs are far less than that of planned repeat c-sections (RCOG 2015; Curtin et al 2013). Yet, all the obstetricians that Terri consulted in this pregnancy and the last two (in both the public and private healthcare sectors) preferred planned c-section risks to the risk of uterine rupture. One doctor told her that waiting for spontaneous onset labour was like running blindfolded across a busy freeway. Terri came to disagree profoundly with the doctor’s risk assessment. Now, most medical caregivers agree that the risks are far higher for VBACs taking place at home, not because there is a greater risk of uterine rupture at home, but because in that extremely rare case it may take too long to reach an operating theater. However, Terri could not find a hospital that was willing to support her attempt at a VBA3C. In addition, at a previous attempt at a VBAC in a private hospital, Terri was only allowed to labour for seven hours before being told she must have a repeat c-section. This time, with her husband’s wholehearted support, she prepared carefully for home birth, where she would have more control. She would go to a nearby public hospital if she needed emergency surgery. She gave birth at home vaginally to a healthy infant after forty hours of peaceful labour, during which regular hand-held Doppler heart rate measurements indicated that her baby was never in distress. Terri says that once labour got going she could feel there was no weakness in her caesarian scar, and so was never scared of rupture.
Though “I was willing to die” was a shocking statement, in my ongoing ethnographic investigation since 2014 of how perinatal risk is defined in Cape Town, I have found Terri’s conviction was far from singular. In my observation of independent midwifery consultations in Cape Town, antenatal classes, births, social media interactions, in my own doula training, and in conversations with pregnant women and their partners, public hospital authorities, doctors and midwives, it was clear that for everyone the stakes were high in what counted as an indication for a c-section. I want to unpack here some of the terms of reference for assessing Terri’s risk – this is to juxtapose some very different ways in which her or her child’s death could signify in post-apartheid South Africa.
“I was willing to die” sounds careless of risk, but Terri made a very careful risk assessment. It was the conclusion of many years of evaluating multiple modes of defining personal and generic perinatal risk. So, “I was willing to die” also meant: “I judged uterine rupture was less likely than in-operative and post-operative c-section complications.” It also meant: “I thought running the small risk of uterine rupture was worth it because I knew for certain I would not be allowed another pregnancy after a fourth c-section.” More broadly, it meant: “I trust my body and God.” Terri read medical research on VBAC risks, consulted with experienced midwives, drew on the experiences of her three other pregnancies and on the experiences of acquaintances on social media for women considering VBACs. In addition to all this research, Terri also had a deep faith in a God-given ability to birth vaginally.
Terri, and many others like her, often find themselves occupying a position somewhere outside of both the private and public South African healthcare systems. In South Africa notions of working and middle class status, and along with that emergent redefinitions of race, are often mapped onto the almost free public healthcare system and the exorbitantly priced private sector. Terri would have been classified as “Coloured” during apartheid, and so would not look out of place among almost exclusively black patients in the public maternity sector. However, VBAC-seekers like Terri are not easy to place in terms of class, exposing the extent to which this category has become increasingly shifty in post-apartheid, millennial South Africa. In a millennial economy, as Jean and John Comaroff describe it, people are less likely to identify themselves in terms of class, though “frequent flyers and frequent fryers” become more and more separate from each other, and the middle classes lose exactly the income security that established them as middle class (300-303). In a biopolitics of public health risk management, Terri is not easy to place, either. In some ways she represents a risk to the biopolitical endeavor of securing the first 1000 days of life: her VBAC is too risky for a public hospital in a country judged by the UN to be failing at reducing maternal and infant mortality. However, as someone who could consider using a private hospital (with personal savings or credit rather than medical aid), her VBAC could also been in a very different category of risk assessment: that of malpractice insurance.
As cultural analyst Mary Douglas wrote in 1992, “risk is always political” (44). While not denying the reality of danger – “always horribly real” – she argues that the notion of risk is a euphemism for danger. Risk, with a nod to probability mathematics, simply sounds more scientific (24-9). In a post-millennium context of highly influential global NPOs, the value of risk discourse lies not only in its connection to science, but in its connection to national population, judged globally. So, in 2013, the WHO could find South Africa as failing to reduce perinatal infant and maternal mortality rates. In the countdown to “the first 1000 days of life,” now believed to be a crucial window for intervention for optimum life-long cognitive ability and well-being, the perinatal period is considered an important time for public health interventions. While there were no explicit references to “the first 1000 days of life” in my field work, it was very clear that perinatal deaths were highly significant of postcolonial South Africa’s health as a nation-state. So, for instance, the Mail & Guardian, a must-read paper for South Africa-based policy-makers, researchers and intelligentsia, wrote that “Giving birth in SA gets riskier,” and “Birth [is] a measure of progress”.
It is tempting to see death’s proximity at birth in terms of national developmental pathology, physical risk or as the pathology of birth itself. However, birthing spirituality suggests an alternative view, one that was important as part of Terri’s risk assessment toolkit. Stellenbosch midwife Sr. Robyn Sheldon writes that “[n]ew life entering this world feels fragile, not because newborns die easily – they are remarkably resilient; but because the baby is still hovering on the brink between fully entering life and leaving behind a more cosmic consciousness” (75). This view would seem counterfactual to many more mainstream South African medical caregivers invested emotionally and epistemologically for many years in a narrative of saving babies and mothers through medical risk assessment. Yet many birth workers I spoke to believe that medical risk is linked directly to what might be termed soul work. They believe, for instance, that it is essential to mourn for lost children in order to avoid prolonged labour (and so avoid c-sections), since it is their experience that in labour unsurfaced fears cause the release of adrenaline, negating the oxytocin that prompts the cervix to stretch open. Sr. Marianne Littlejohn, drawing on thirty years of midwifery experience in South Africa’s public and private hospitals, explained to me that “birth involves grief and death. You have to be able to let go, of your body, of how you look, of your plans, your dreams. A woman who can’t grieve is a woman who will have a hard time in labour.”
I present here different kinds of death apparent in Terri’s risk assessment of her VBA3C. The first is the statistical danger of death. Then, Terri’s or her child’s death would have signified also in terms of population – of women seeking VBACs, of women registered in a public sector facility. Such deaths would be significant of national development (or lack thereof). Terri also considered death in terms of her religious beliefs, and in terms of what I would term “soul-aware life-giving”, a mode of birthing preparation that makes reference both to medical concepts and to spirituality. If, as Sr. Littlejohn suggests, a woman who can’t grieve is a woman who will struggle with labour, a woman who cannot face down the threat of her own death (in multiple modalities) cannot attempt a VBA3C, as things stand now, in the Cape Town birthing sector.
Kathleen Lorne McDougall is a postdoctoral fellow in Anthropology at the University of Cape Town, affiliated with the First 1000 Days of Life research group since 2014. She is conducting an ethnographic study of how perinatal risk is defined and managed in the Cape Town birthing sector. In 2013, she graduated in Anthropology from the University of Chicago, where her doctoral work focused on family trees. She gave birth in Cape Town three years ago, and lives there with her husband and toddler.
My research on perinatal risk has been funded by the South African National Research Foundation, the Department of Trade and Industry, and the by the Mellon Foundation.
Cluett, E R et al. 2004. Randomised controlled trial of labouring in water compared with standard of augmentation for management of dystocia in first stage of labour. BMJ 328: 314.
Comaroff, Jean and Comaroff, John L. 2000. Millennial Capitalism: First Thoughts on a Second Coming. Public Culture 12(2) 291-343.
Curtin, Sally, Gregory, Kimberley, D., Korst, Lisa M., and Sayeedha, F.G. Suddin. 2015. Maternal morbidity for Vaginal and Cesarean Deliveries, According to Previous Cesarean History: New Data from the Birth Certificate, 2013. National Vital Statistics Reports 64(4).
Douglas, Mary. 1992. Risk and Blame: Essays in Cultural Theory. London: Routledge.
Gammeltoft, Tine. 2014. Haunting Images: A Cultural Account of Selective Reproduction in Vietnam. Berkeley: University of California Press.
Gibbons, L. Belizan, J. Lauer, J. Betran, A. Merialdi, & M. Althabe, F. 2010. The global numbers and costs of additionally needed and unnecessary caesarean sections performed per year: Overuse as a barrier to universal coverage. World Health Report: Background paper (30). World Health Organisation.
Gray, A. & Vawda, Y. 2015. Health Policy and Legislation In South African Health Review 2014/15, Durban: Health Systems Trust, pp.243-247 Available at: http://www.hst.org.za/publications/south-african-health-review-2014/15
Spong, CY et al. 2012. Preventing the first cesarean delivery: summary of a joint Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine and American College of Obstetricians and Gynecologists Workshop. Obstetric Gynecology 120(5), 1181-93.
Sheldon, Robyn. 2008. The Mama Bamba Way. Cape Town: Sharp Sharp Media.
Conference Report: Ludwik Fleck’s theory of thought styles and thought collectives – translations and receptions by Sandra Lang
Ludwik Fleck’s theory of thought styles and thought collectives – translations and receptions
March 10th – 11th 2016
Organizing committee: Paweł Jarnicki (Project Science Foundation and Ludwik Fleck Centre at Collegium Helveticum); Martina Schlünder (Ludwik Fleck Circle and Max Planck Institute for the History of Science); Ohad Parnes (Max Planck Institute for the History of Science); Rainer Egloff (Ludwik Fleck Centre at Collegium Helveticum) and Sandra Lang (Ludwik Fleck Centre at Collegium Helveticum and TU Munich Graduate School).
Introduction: Aims of the conference
When Ludwik Fleck published his book Entstehung und Entwicklung einer wissenschaftlichen Tatsache. Einführung in die Lehre vom Denkstil und Denkkollektiv in 1935, the initial reception did not extend beyond a handful of reviews. After Thomas Kuhn “re-discovered” Fleck and initiated the English translation (Genesis and Development of a Scientific Fact) with an international collective around Robert K. Merton in 1979, a broader reception slowly emerged in the English-speaking world. A German re-edition appeared in 1980. Further translations into Italian (1983), Polish (1986), Spanish (1986), Swedish (1997), Russian (1999), French (2005) and Portuguese (2010) followed. Fleck has grown popular, a fact the conference reported on here paid tribute to by historicizing and reflecting on various aspects and forms of his ideas, and their development in different languages and in distinct (inter-)national scholarly contexts. A central aim of the conference was to investigate the paths which the reception and translation of Ludwik Fleck’s works have taken and to elaborate issues to be aware of in future translations. The organizing committee was proud to welcome a large number of the translators and editors of Fleck’s work such as Nathalie Jas (French), Stefano Poggi (Italian), Mariana Camilo de Oliveira (Brasilian-Portuguese) and Mauro Condé, all of whom who offered first-hand insights to the circumstances and challenges connected to the processes of translation. In addition to the translations and reprints of Fleck’s works, scholars have developed empirical, theoretical, philosophical and historical applications for his ideas and a rich discourse has emerged around them. Today the largest collectives of Fleck scholarship are located in Brazil, the US and Europe (especially Poland, Germany, France and Switzerland); talks and commentaries by David Östlund, Paweł Jarnicki, Martina Schlünder, Mauro Condé, Sandra Lang and Rainer Egloff represented this range of discourses surrounding the reception of Fleck’s work. One aim of the discussion involved strategies for extending the reach of Fleck’s ideas into other countries and into disciplines beyond science studies and the history of medicine. Any translator of Fleck faces the difficulty of dealing with theoretical terms and of embedding the author in a broader philosophical context. These issues and the new theoretical questions that have emerged from recent translations were introduced by Katarzyna Gurczyńska-Sady, Hartmut von Sass, Ilana Löwy, Jadwiga Kamola and Nicholas Binney. Thanks to Sofiya Grachova, Artur Koterski and Avi Ohry, new insights into Fleck’s biography and historical context are available. Monika Milosavljević, and Wojciech Sady presented contributions on the contextual origins of Fleck’s ideas and on the benefits of applying them. Pit Arens showed how Fleck can be adopted by the arts.
Translating Fleck: challenges and new questions
The panel on translation issues was opened by David Östlund, who analyzed Bengt Lillequist’s 1997 Swedish translation of Entstehung. Östlund referred to the complex implications the translation of denken as a verb or respectively as a gerund. The Swedish translation struggled a lot with the distinction between att tänke (verb) and tanke (noun). Uppkomsten och utvecklingen av ett vetenskapligt faktum: Inledning till läran om tankestil och tankekollektiv was the final title, but Östlund found more analytical evidence for the verb form represented in tänkekollektiv, as Fleck also preferred the verb form in his English writings. He compared Fleck’s thoughts to some representatives of Anglophone intellectual history such as Quentin Skinner.
Nathalie Jas offered some interesting insights into the process of translating Fleck from German into French. In 2005 she finished the translation after three years, starting as a “non Fleck specialist and non professional translator”. The example of Jas may be seen as an inspiration for upcoming translations of Ludwik Fleck’s work in other languages. While many others had given up the project of translating Fleck into French, Jas spent years gathering background information by studying dictionaries, literature on Fleck, the interwar period and the history of medicine, all which resulted in a very successful translation.
Stefano Poggi, who translated Fleck’s work into Italian along with Maria Leonardi in 1983, spoke about Paolo Rossi, the initiator and publisher of Genesi e sviluppo di un fatto scientifico: per una teoría dello stile e del collettivo di pensiero. Poggi discussed the intentions motivating Rossi’s publication of Fleck’s work. During the 1960s and 1970s Italian philosophy of science experienced a paradigm shift connected to the influential works of Kuhn, Hanson, Lakatos, and Feyerabend. According to Poggi, Rossi was more critical of this “revolution” in epistemology and tried to strengthen the theoretical connection between Fleck and the Austro-German environment (especially the Vienna Circle) in which his thoughts had emerged.
The conference also provided a platform to discuss the translation of Entstehung from German into Brazilian Portuguese, which was realized in 2010 under the direction of Mauro Condé. Mariana Camilo de Oliveira, who translated Fleck’s text along with Georg Otte, remembered how they dealt with the challenges Fleck’s theoretical terms presented. Fleck’s neologisms, archaisms, terms from microbiology and self-references were very difficult to translate and the translators were aware that such subtleties would shape the perception of future readers. Camilo de Oliveira illustrated this with a variety of terms that represent those ambiguities very well, such as Lustseuche, Brustkorb, Lehre and of course the Denkstil.
As other contributors pointed out, such issues of translation have not always been treated so sensitively. Pawel Jarnicki, Rainer Egloff and Martina Schlünder presented linguistic, contextual and historical analyses of the English translation of Fleck’s works. Fleck’s bilingual legacy – he was bilingual in Polish and German, and he published in both languages – was not taken into account when Robert Merton and colleagues translated, edited and introduced the English version of Fleck’s monograph (published in 1979). The translation process proved stressful and took several years, as shown by Martina Schlünder, who analyzed the process of the English translation based on archival material from Robert Merton’s papers. Those papers document the complicated communication between the translators, editors (Merton, Trenn) and the author of the foreword, Thomas Kuhn. They complained of Fleck’s “difficult” (Kuhn) and “idiosyncratic” (Trenn, Merton) German and struggled with Fleck’s theoretical (e.g. active/passive Kopplung, Beharrungstendenz, Widerstandsaviso, Denkstil, Denkkollektiv) and medical terms just as Camilo de Oliveira’s team did. Schlünder concluded that the English translation decontextualized Fleck’s original in several ways. The translators and editors didn’t understand the hermeneutical strategies and the radical politics of the book (radical in terms of questioning the foundations of western philosophy by marginalizing and multiplying epistemology). These strategies were mainly embedded in the neologisms and the language (“funny German”) the editors misunderstood. Moreover, they didn’t understand or did not want to understand the book as an intervention against antisemitism and racism in Poland. Instead they de-historicized it and “improved” it to make connections to Kuhn and social constructivism.
Fleck himself did not self-translate but wrote his theory simultaneously in both German and Polish, as Jarnicki argued. There are therefore terms for which an equivalent in both languages can be found, and others (like Beharrungstendenz) that were only used in one. A comparative glossary of German and Polish terms can thus be used as a base for further translations into other languages. In the discussion, the dangers of misunderstanding terms and subsequently shaping receptions were raised. Is there a need for a new English translation? Is it important to “modernize” Fleck’s language? How can Fleck’s ideas be popularized – and should they be? In this context, Jan Surman emphasized the importance of reflecting on the mechanisms of book markets and which realities they construct by “domesticating” and “foreignizing” a text.
Applying Fleck: New discourses enriched by Fleckian theory
With a remarkable contribution from a Serbian perspective, Monika Milosavljević offered insights into the discourses of contemporary and historical Serbian archeology. A young research group founded the Centre for Theoretical Archeology in an attempt to connect different institutions and to overcome nationalist “proto-ideas” that hinder progress in archeological research. Recognizing a lack of theoretical concepts and an overemphasis on attributing “national” status to archeological findings, this group of scholars introduced the theory of Ludwik Fleck into their interpretations. Combined with other sociological and philosophical approaches, such as those of Karl Mannheim and actor network theory, these scholars are attempting to establish a less ideological and more epistemologically reflective style of archeology based on dialogue with discourses outside Serbian borders.
The debate between Tadeusz Bilikiewicz and Ludwik Fleck has often been widely investigated and discussed in the reception of Ludwik Fleck’s works. While Bilikiewicz’s philosophical contributions have been much-discussed, not much attention has been paid to his work on embryology during the baroque and rococo periods (Die Embryologie im Zeitalter des Barock und des Rokoko). Artur Koterski, a historian of philosophy of science, reconstructed and analyzed Bilikiewicz’s early research in history of medicine. He discussed different historical concepts of eggs, sperms and conception (e.g. Albrecht von Haller, Pierre Maupertuis, John Needham) and embedded them in the broader philosophical context of the corresponding epochs. In doing this, he argued that Bilikiewicz’s thought style can be characterized as a metaphysical, ontological, causal and epistemological realism.
Drawing on his research on the history of quantum physics in the 1920s, Wojciech Sady argued that Fleck’s epistemology does not go far enough to explain scientific revolutions. Sady’s case study dealt with the controversy between Max Planck and his followers. Planck, who already during his lifetime was celebrated as the father of quanta, did not himself believe in his scientific discoveries and the revolution he provoked. Indeed, at a 1912 congress organized in his honor Planck still attempted to convince the participants not to believe in quanta. This case study highlights an unexplored question in Fleckian theory and application: How do concepts held by individuals relate to those which appear in publications? Sady’s statement – “What cannot appear in an individual human mind – as mind is socially conditioned – can appear on paper” – provoked an enriching discussion that may lead to further epistemological reflections on Fleck’s theory and application in the history of science.
Pit Arens’s talk gave inspiring insights on his contribution as an artist to an exhibition on Ludwik Fleck. Conceptualized by the Ludwik Fleck Kreis and on display at Max Planck Institute for the History of Science in Berlin 2002 and at Collegium Helveticum in Zurich 2004, the exhibition-installation summed up the state of research on Fleck’s life and work at that time. Since the Zurich exhibition the Ludwik Fleck Center has been established at Collegium Helveticum.
Reception of Ludwik Fleck in different countries
The conference talks and discussions showed that the reception of Ludwik Fleck’s work has differed significantly between distinct cultural and linguistic settings. In Poland and other countries of central Europe Fleck is perhaps receiving the strongest theoretical and philosophical reception. Elsewhere, the history and philosophy of science and medicine have managed to find more empirical applications. As Paweł Jarnicki and Sandra Lang showed, Ludwik Fleck’s works are a very common topic of master’s theses and dissertations in Poland and Germany, especially in the humanities and social sciences connected to science, technology and medicine. In Brazil, as Mauro Condé pointed out, Fleck discourse is much more focused on developing applications and improving scientific practice by including epistemological reflections. Fleck’s ideas are often used in the fields of science education, history of science and medicine, sociology and philosophy. According to Mauro Condé Fleck fits very well into the Brazilian scientific landscape, which is just as diverse as Brazilian society in general. As Ilana Löwy put it in the following discussion, the connection between sciences, politics and social questions is very strong in contemporary Brazil, so that theoretical questions are much more related to future applications than they are in Central Europe and elsewhere, where theoretical reflections predominate. Fleck’s popularity in Brazil, linked to the applicability of his ideas and their encouragement of transdisciplinary connectivity, is yet more proof of his significance 80 years after his first book was published.
Among German speaking researchers a strong tendency for Fleck-based applications can also be observed, as Sandra Lang showed. Many marginalized thought collectives, especially in medicine, care and education studies, have found Fleck’s concept of the plurality of realities and social constitution of scientific facts highly emancipatory.
Historicizing and Fleck: unknown aspects of Fleck’s life
Sofiya Grachova investigated the Circle of Jewish Physicians in Lwów and which role Ludwik Fleck played during his time as its head (1937-1938). She shed light on the project of researching Fleck’s own biological and biochemical works, a project which remains largely unrealized. Based on newly gathered archival data from Lwów, Grachova was able to offer interesting insights into Fleck’s activities. In the frame of a campaign put on by the Society for the Protection of the Health of Jewish Population (TOZ), Fleck offered popular lectures to inform people about health risks and disease prevention. Such lectures were e.g. on “Love and Hate among Humans and Animals”, but also on immunology and serology such as the lecture series “The Mysteries of Blood”. According to Grachova this last lecture can be seen as a (critical) answer to the eugenics movement as well as to contemporary Polish ethno-national propaganda.
Besides Fleck’s activities in pre-war Lwów, the participants learned much about Fleck’s life in Israel and work at Nes Ziona during 1950s and 1960s. This was thanks to Avi Ohry, who had personally met with Fleck’s son, Ryszard (Arie) Fleck. According to Ohry, Ryszard Fleck and his wife had turned their apartment in Petach Tikva into a “shrine” to the memory of Ludwik Fleck. Ohry also reported on encounters with colleagues of Fleck at the Israel Institute for Biological Research such as Moshe Aharonson and Marek Klingberg. Moreover, Ohry gave a broad historical overview of Fleck’s own thought collective in Poland before, during and after the war.
Theories of translations and translating: inspired by Fleck
In discussing the various challenges of translating Fleck’s work it became apparent that not only scientific work but also the work of translators is highly collective. In addition to the translators themselves, the process involves an entire group of other actors, many from a more exoteric circle (e.g. publishers and editors), which raises problems of power. Referring to this, Ilana Löwy emphasized that communication—translation processes included—never occurs without transformation and remodeling. Löwy illustrated this argument with Fleck’s own style of working and thinking. Fleck himself can be seen as very mobile between diverse thought collectives. His “nomadic state” made it possible for him to think beyond the established borders of style. Fleck’s open, democratic, reflective and critical way of thinking about complex medical problems offers fruitful perspectives for public health.
Hartmut von Sass offered his reflections on transcendentalist and realist aspects of Fleck’s way of thinking. He claimed that Fleck can be seen a transcendentalist, even though not in the Kantian style, as the collective in Fleck can’t be understood as a transcendental ego. It exceeds the individual but is still not universal. Von Sass stated that Fleck’s notion of social and educational elements of science are evident in his term “learning to see,” which is close to Wittgenstein’s hermeneutic contextualism (“abrichten”). Such a philosophy of science is represented by Philip Gardner, as he assumes the construction of knowledge, but does not imply a demand for universalism. Another Kantian and Wittgensteinian approach to Fleck was represented by Katarzyna Gurczyńska-Sady, who reflected on the problem of anticipation in Fleckian theory.
Jadwiga Kamola analyzed the impact that Gestalt psychology had on the development of Fleck’s thought. By discussing the Fleckian term “Widerstandsaviso” and the processes of “learning to see”, she shed new light on Fleck’s philosophical and psychological thought on cognition in general, which was highly shaped by the Gestalt psychology of his times. The active and passive elements of knowledge in the development of scientific facts were discussed by Nicholas Binney. Based on a case study analyzing the medical and legal discussions on diagnostics of rickets and abusive head trauma in infants, he showed how important it is to put more empirical and philosophical emphasis on such Fleckian terms.
Some 80 years after Fleck published his Entstehung und Entwicklung einer wissenschaftlichen Tatsache he seems to be more popular than ever. By now his terms and theories have gained the status of a classic work in the history, sociology, and philosophy of science. A special role in the popularization of his works has been played by translations and the translators who produce them. Reflecting on the challenges of translating Fleck and remaining aware of the significance of Fleckian terminology may prepare the ground for further translations into other languages.
Sandra Lang graduated form University of Freiburg, Germany with a Master of Arts in sociology in 2014. She is currently completing her PhD project at the Collegium Helveticum located at the ETH Zürich and the Munich Center for Technology in Society (TU München). Her main research interests are sociology of science and medicine, science and technology studies, gender studies, theory and reception of Ludwik Fleck, bibliometrics and methodology of the qualitative social research program.
 The conference was organized by Project Science Foundation (as a part of the project Philological analysis of Ludwik Fleck’s Philosophical works and its translations into Polish, English and German funded by the Polish National Science Centre awarded on the basis of the decision number DEC-2012/06/M/HS2/00313; for a documentation of the project see: http://ludwikfleck.pl). It was also sponsored by the Ludwik Fleck Centre at Collegium Helveticum, MPIWG Max Planck Institute for the History of Science, and Ludwik Fleck Kreis.
 An online version can be found here http://www.ludwik-fleck-kreis.org/index.php?pageid=32.
Here are some articles published in June that may be of interest. Enjoy!
Cancer graphic narratives, I argue, are part of a medical imaginary that includes representations of difference and biomedical technology that engage Fassin’s (2009) concept of biolegitimacy. Framed in three parts, the argument first draws on discourses about cancer graphic narratives from graphic medicine scholars and authors to demonstrate a construction of universal suffering. Second, I examine tropes of hope and difference as a biotechnical embrace. Finally, I consider biosociality within the context of this imaginary and the construction of a meaningful life. Autobiographical graphic narrative as a creative genre that seeks to give voice to individual illness experiences in the context of biomedicine raises anthropological questions about the interplay between the ordinary and biolegitmate. Cancer graphic narratives deconstruct the big events to demonstrate the ordinary ways that a life constructed as different becomes valued through access to medical technologies.
Some North American hospitals now offer parents the opportunity to see, hold, and photograph fetal remains after pregnancy loss. I explore the social, material, and interpretive strategies mobilized to create this fetal visibility after second trimester–induced abortion for fetal anomaly. My analysis examines both the discursive framing of fetal remains in practice guidelines on pregnancy loss and the responses of a group of Canadian women to being offered “time with babe.” I show that while guidelines tend to frame contact with fetal remains as a response to women’s desires to see their baby and to feel like mothers, women’s experiences of this contact were shaped by more diverse wishes and concerns as well as by specific abortion practices and practitioner comments and actions.
This article examines how amplified fetal heartbeats may be used to make claims about fetuses’ social presence. These claims are supported by the Mexican Public Health system’s selection of the maternal–child relationship as a key site of clinical intervention, intertwining medical and moral discourses. Drawing on the robust literature on cross-cultural propositions of “fetal personhood,” this analysis uses ethnographic material from public health institutions in Oaxaca, Mexico, to explore how doctors use diagnostic technology to materialize fetuses for their patients. I argue that Spanish’s epistemological distinction between saber (to have knowledge about) and conocer (to be acquainted with) is key to how diagnostic technologies may be deployed to make social claims. I use one doctor’s attempts to use technology to shift her patient from saber to conocer as illustrative of underlying cultural logics about fetal embodiment and its proof. Focused on the under-theorized socio–medical deployment of audio fetal heartbeat technology, this article suggests that sound—in addition to sight—is a potent tool for constructing fetal personhood.
Incertitude, Hepatitis B, and Infant Vaccination in West and Central Africa
Tamara Giles-Vernick, Abdoulaye Traoré, Louis Bainilago
This comparative study explores incertitude about hepatitis B (HBV) and its implications for childhood vaccination in Bangui, Central African Republic, and the Cascades region, Burkina Faso. Anthropological approaches to vaccination, which counter stereotypes of “ignorant” publics needing education to accept vaccination, excavate alternative ways of knowing about illness and vaccination. We build on these approaches, evaluating different kinds of incertitude (ambiguity, uncertainty, ignorance) about infancy, HBV, health protection, and vaccination. Using interviews and participant observation, we find that Bangui and Cascades publics framed their incertitude differently through stories of infancy, illness, and protection. We locate different forms of incertitude within their historical contexts to illuminate why vaccination practices differ in the Cascades region and Bangui. A more nuanced approach to incomplete knowledge, situated in political, economic, and social histories of the state and vaccination, can contribute to more appropriate global health strategies to improve HBV prevention.
Hymenoplasty is a controversial surgery in Iran, where a woman’s failure to present herself as virginal for marriage may result in severe social repercussions. Critical literature surrounding this clandestine surgery is sparse. During ethnographic fieldwork in Tehran, I interviewed women who have and have not undergone hymenoplasty and physicians who perform it. Using a Foucauldian framework, I argue that the medicalization of virginity is a form of female social control in Iran. The resulting narratives and discourses suggest that hymenoplasty is a covert form of resistance against socioculturally prescribed sexual inegalitarianism that restricts women to the social sphere of premarital chastity. By manipulating the medicalization of virginity, women inadvertently resist dichotomous gendered classifications that constrain them as either the deviant woman who has premarital sex or the normal woman who remains virginal until marriage. These women deviate from a fixed notion of gender embodiment, eroding socioculturally constituted categorical boundary markers regarding femininity.
This article is based on an ethnographic study of prenatal screening for Down syndrome in two British health care institutions. Drawing on observations of everyday hospital life and interviews with health care professionals, I identify how a discussion of Down syndrome is avoided during prenatal screening consultations. This relative silence is created and upheld because of three things: (1) the British public is considered as knowing what Down syndrome is; (2) the organization of care dictates that the condition is not classified as important enough to justify an explanation within consultations; and (3) professionals frequently admit to having minimal knowledge of Down syndrome. This absence, together with the condition being categorized as a risk or problem, helps produce and uphold its status as a negative pregnancy outcome. I conclude by highlighting the contributions that this article has for anthropologically exploring how ideas around disability intersect with the proliferation of reproductive technologies.
Culture and the Immune System: Cultural Consonance in Social Support and C-reactive Protein in Urban Brazil
William W. Dressler, Mauro C. Balieiro, Rosane P. Ribeiro, José Ernesto dos Santos
In this article, we examine the distribution of a marker of immune system stimulation—C-reactive protein—in urban Brazil. Social relationships are associated with immunostimulation, and we argue that cultural dimensions of social support, assessed by cultural consonance, are important in this process. Cultural consonance is the degree to which individuals, in their own beliefs and behaviors, approximate shared cultural models. A measure of cultural consonance in social support, based on a cultural consensus analysis regarding sources and patterns of social support in Brazil, was developed. In a survey of 258 persons, the association of cultural consonance in social support and C-reactive protein was examined, controlling for age, sex, body mass index, low-density lipoprotein cholesterol, depressive symptoms, and a social network index. Lower cultural consonance in social support was associated with higher C-reactive protein. Implications of these results for future research are discussed.
In this review essay, I explore the implications of renewed anthropological interest in materiality and the cultures that emerge from interaction among humans, nonhuman agents, and the material environment. Drawing upon sociocultural anthropology published primarily in 2015, I focus on five themes: cultures as emergent; bureaucracies in contemporary life; science, measurement, and state policy; affect and emotion in daily life; and multispecies and interspecies studies. Overall, the works I review illustrate the strength of anthropology in rendering visible the contradictions, trade-offs, and unlikely connections of lived experience in a material world. The works also show how cultures become real through people’s actions and interactions with others. Nevertheless, sociocultural anthropology continues to face two enduring contradictions: first, attention to inequalities and disadvantages caused by existing structures versus an emphasis on the emergence and consequent unpredictability of social forms, and second, a view of humans as significant causal agents who can harm the natural world versus a perspective that sees humans as influenced by complex environments that include nature, nonhuman living beings, and inanimate objects.
[excerpt] Many of medical anthropology’s leading lights are currently lamenting the undervalued place of ethnographic work in public health and medicine. Vincanne Adams argues that in the field of global health, demands for randomized, controlled studies have become an “empirical tyranny” (Adams 2010:48). João Biehl and Adriana Petryna assert that “ethnographic evidence consistently dies within the dominant conceptual paradigms of global health” (Biehl and Petryna 2013:16). This argument seems incomplete to us. Based on our experience publishing and collaborating with health professionals in two very different arenas—global polio eradication and veteran-oriented health services research—we have come to believe that anthropologists now have an unprecedented opportunity to contribute to the creation of clinical and public health structures more deeply informed by core anthropological concerns. Anthropological theory has a powerful grasp of the connection between broad-scale social structures and intimate lived realities, and its methods are perhaps unequaled in capturing the nuances of context. But making the most of anthropology’s particular strengths will require overcoming a series of challenges,particularly in how we as anthropologists communicate with other health professionals. In this commentary, we first discuss our observations on anthropology’s unique value in con-temporary health research and practice and then offer a few suggestions for how to make the most of our contributions.Ultimately, we contend that making sure that anthropology has a place at the table with public health and medicine will require a new reflexivity, a careful examination of the biases and conventions of our discipline.
The normalisation of body gifting in Taiwan
The Tzu Chi Foundation has made body gifting, such as body donation, bone marrow donation and cord blood donation, successful in Taiwan. Using Foucault’s theoretical framework of governmentality and normalisation, this article discusses how a Buddhist charity, the Tzu Chi Foundation, normalises body gifting in Taiwan through their campaigns, system and philosophy. It argues that Buddhist discourses of karma create a ‘benefit-all altruism’ in body gifting. Furthermore, the emergence of the Tzu Chi Foundation in the last five decades has been a process of discipline and norm construction. The Tzu Chi Foundation, with its comprehensive missions, builds up an extensive network to spread their philosophy in different fields, from environmental protection and humanity education to medical care. The practice-oriented and community-based volunteer system helps the ‘giving’ ideology take root in the communities in Taiwan. Finally, through the media and the Internet, the effect goes beyond the institutional boundaries and reaches the public.
Vaccine resistances reconsidered: Vaccine skeptics and the Jenny McCarthy effect
Samantha D Gottlieb
Recent data and increased vaccine-preventable disease outbreaks suggest that a growing number of US parents choose not to vaccinate their children. Popular media have responded to this phenomenon by emphasizing refusers’ moral failings and irrational fears. This article explores vaccine skeptics’ objections and argues that their critics miss fundamental reasons for resistances. Drawing on ethnographic research with a community of vaccine skeptics in southern California, a consideration of a leading vaccine researcher’s responses to vaccine critics and an analysis of Jenny McCarthy’s condemnation of current vaccine practices, this research considers why even parents who have accepted some vaccines, but not all, distrust vaccines and their proponents. Parents’ skepticism merits new forms of engagement by physicians and other vaccine advocates. As with any health intervention, vaccines can present some risks to a small number of recipients; when public health and clinical messages minimize parents’ fears, they may increase parental doubt. The voices of parents who choose to opt out of or to alter the normal vaccine schedule reveal important expressions of biomedical resistance.
The Research Domain Criteria (RDoC) project is an ambitious new initiative by the National Institute of Mental Health that aims to comprehensively redefine mental illnesses as problems of neurogenetic ‘circuitry’. This essay explores potential implications of this nascent approach. Drawing on data from two studies that examine the diagnosis of autism spectrum disorder, itself recently reconceptualized along lines similar to this new diagnostic paradigm, I argue that such ‘circuit disorders’ differ from their predecessors in two significant ways. First, while psychiatric disease entities under the previous paradigm were understood as fundamentally separable from the affected person, circuit disorders are bound up in intimate neuropsychological processes such as memory, perception and desire; they are thus often experienced as constitutive of identity by those living under their description. Second, rather than being limited to matters of ‘clinically significant impairment’, circuit disorders are multivalent, encompassing valued as well as devalued traits. Given that one major aim of the RDoC is to allow for pre-emptive biomedical intervention upon pre-symptomatic states, these emergent qualities of circuit disorders raise complex ethical concerns. I conclude by illustrating the way these concerns become obscured in the transition to an ostensibly value-neutral biophysiological paradigm.
“You’re not just a paid monkey reading slides”: How key opinion leaders explain and justify their work
Sergio Sismondo, Zdenka Chloubova
Key opinion leaders (KOLs) are physicians and researchers engaged by pharmaceutical companies, most often to speak to audiences of other physicians. This article provides some background information on the structures of pharmaceutical company influence on and control over KOLs. The primary focus of this article, though, is on KOLs’ explanations and justifications of their paid work for the companies, on the basis of, among other sources, 13 interviews with high-earning KOLs. Among KOLs’ important justifications are ones in terms of the educational value of the talks they give and the benefits gained by patients; these are buttressed by claims about the integrity of the speakers. However, those justifications rarely address pharmaceutical companies’ use of KOLs, or larger issues to do with the general influence that pharmaceutical companies have on medical knowledge.
Local biologicals and the politics of standardization: Making ethical pluripotent stem cells in the United Kingdom and Japan (open access)
Koichi Mikami, Neil Stephens
In 2003, the United Kingdom and Japan had adopted relatively similar approaches to human embryonic stem cells science. The decade since has witnessed significant divergence in their national policies as differing responses to ethical questions about research use of human embryos emerged. The United Kingdom pursued a vision of ‘institutionally accredited stem cells’ by reconfiguring the role of the Human Fertilisation and Embryology Authority and establishing the UK Stem Cell Bank. In contrast, Japan followed a vision of ‘technically advanced stem cells’ by developing induced pluripotent stem cells and supporting its research programs enthusiastically. Our research – drawing upon extensive fieldwork in both countries – demonstrates the socio-technical arrangements developed to instantiate these visions and articulates their divergence while at the same time revealing their connectedness. This relationship becomes progressively evident as the two visions face each other in the politics of standardization in global stem cell science. Drawing on Franklin’s concept of local/global biological, we discuss the connectedness of the two local arrangements. In so doing, we explicate the future challenges for both countries as they need to demonstrate the significance of their visions in this global enterprise, while the success of one would likely undermine the significance of the other.
Mental health courts (MHCs) are a response to the structural violence experienced by people with severe mental illness (SMI) involved in the criminal justice system. My ethnographic research of an MHC in urban Canada serves as the foundation for a discussion of court processes that are an example of biopower. The purpose of this article is to demonstrate how strategies for intervention in the name of life and health, truth discourses and forms of self-governance operate among criminal justice-involved individuals with SMI. This study reveals the tensions between the intense forensic gaze and invisibility and between treatment strategies that are beneficial for some people with SMI yet ultimately coercive and oppressive. The governance of this population is discussed, as well as what happens to people who fail or refuse to self-govern as the court compels them.
This issue of BioSocieties also has a Book Forum about recent literature on the so-called obesity epidemic. The forum is introduced by Nicolas Langlitz here: Biosociological weight watching: From European famines to Guatemalan love handles (open access).
Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control
Elly Teman, Tsipy Ivry, Heela Goren
Studies on reproductive technologies often examine women’s reproductive lives in terms of choice and control. Drawing on 48 accounts of procreative experiences of religiously devout Jewish women in Israel and the US, we examine their attitudes, understandings and experiences of pregnancy, reproductive technologies and prenatal testing. We suggest that the concept of hishtadlut—”obligatory effort”—works as an explanatory model that organizes Haredi women’s reproductive careers and their negotiations of reproductive technologies. As an elastic category with negotiable and dynamic boundaries, hishtadlut gives ultra-orthodox Jewish women room for effort without the assumption of control; it allows them to exercise discretion in relation to medical issues without framing their efforts in terms of individual choice. Haredi women hold themselves responsible for making their obligatory effort and not for pregnancy outcomes. We suggest that an alternative paradigm to autonomous choice and control emerges from cosmological orders where reproductive duties constitute “obligatory choices.”
Disability Studies Quarterly (Open Access)
Being Disoriented: Uncertain Encounters with Disability (open access)
Ryan C. Parrey
Disorienting encounter with disability are those in which the meaning of disability is an open question, and in which our relation to it is questionable. This essay explores the relationship between disability and disorientation on conceptual but also concrete levels. First, I examine the connection between disability and disorientation within disability studies. Second, I provide a preliminary sketch of disorientation through what I call ontic disruption and ontological disorientation. Third, I take up Leder’s (1990) articulation of bodily disappearance and embodied dysappearance to address ableist violence. Finally, I develop the notion of dysorientation — a prolonged, persistent or recurrent sense of disorientation — as a useful concept for understanding experiences of ableism but also as a significant meeting point between impairment and disability.
Beyond the Feeble Mind: Foregrounding the Personhood of Inmates with Significant Intellectual Disabilities in the Era of Institutionalization (open access)
Holly Allen, Erin Fuller
This essay explores the experiences of persons with significant intellectual disabilities at the Vermont State School for Feebleminded Children (later Brandon Training School) in the period 1915-1960. We discuss the limits of existing histories of intellectual disability in accounting for the distinct experiences of significantly intellectually disabled people. This essay works to correct the tendency to define the nominal intellectual disability of “morons” and “borderline” cases—both in the past and in disability historiography of the past—against the abject, embodied difference of the “low-grade idiot” or “imbecile.” The history we offer has implications for the present-day disability rights movement.
Implementing universal design in a Norwegian context: Balancing core values and practical priorities (open access)
Inger Marie Lid
How can urban planning processes include perspectives from people with disabilities? This paper discusses the implementation of universal design (UD) and accessibility in a local urban context. Universal design consists of both core values, such as inclusion and equal status, and specific design initiatives, such as design of pavement surfaces and benches. The aim of implementing universal designing strategies is to achieve equal access for all citizens. The paper interprets the urbanist Henri Lefebvre’s notion of the right to the city as a right to participate in urban life and thus a dimension of equal citizenship on a very concrete level. The right to participate in urban life is closely linked to access to the built environment. Based on an empirical study of an urban redesign project, I argue that equal access must imply both access to public places and to political processes.
Explanation not Excuse: Attention Deficit Disorder, Collegiality and Coalition (open access)
David P. Terry
This ethnopoetic essay performs some of the professional, interpersonal and political challenges presented by ADHD and some of the ways in which non-visible disabilities intersect with other axes of privilege and accessibility.
“I’m stronger than I thought”: Native women reconnecting to body, health, and place
Katie Schultz, Karina L. Walters, Ramona Beltran, Sandy Stroud, Michelle Johnson-Jennings
This community-based research applied principles of wilderness experience programming and Indigenous knowledges in an exploratory intervention designed to address health disparities in a tribal community. Drawing on historical trauma frameworks, tribal members rewalked the Trail of Tears to consider its effect on contemporary tribal health. Qualitative data from tribal members suggest that engagement with place and experiential learning, particularly the physical and emotional challenge of the Trail, facilitated changes in health beliefs, attitudes, and behaviors. Deep engagement outside of traditional health service settings should be considered in interventions and may be particularly effective in promoting positive health behaviors in Native communities.
Both scientific and popular discourses assume that the environment can exert an influence on human health. Drawing on anthropological research conducted alongside mental health activists in the United Kingdom, I discuss how people affected by mental health problems sought to recover by visiting outdoor places in the London Borough of Richmond. Their intentional movement and stillness in the world involved tuning and narrative orientation, which, over time, became skilled. Recovery from mental ill-health was not an outcome of merely being in a particular place, but rather emerged as an ongoing process of relearning how to live in and as part of the environment.
Drawing on fieldwork in Chiang Mai during 2010 and 2012, I examine poor Thais’ and Shan migrants’ experiences of receiving healthcare from a public hospital, and, in parallel, care from the state. While universal health coverage has become a way in which the state finds legitimacy in people’s lives through giving care, being a recipient of state aid is implicated in the emotive domain of waiting. By focusing on how people feel and think of a gift and debt of care, I suggest that flows of affects that loom large in social interactions within the public hospital denote not only poor people’s subordinate position but also their effort to achieve a sense of mutuality and moral autonomy. This study contributes to a broader understanding of experiences of paternalism, inequality, and dependence by illuminating people’s agentive submission into relations of care.
Gastroenvironmental distress: metaphorical antecedents of the gut microbiome
Nitin K Ahuja, Amisha Ahuja
The human gut has been viewed for centuries as a potential mediator of systemic disease. The theory of autointoxication, which found its clearest articulation in the late nineteenth and early twentieth centuries, focused on altered bowel habits as the cause of widespread physical decay and advocated for the pursuit of health through regular defecation. More recently, under the banner of the microbiome, research on commensal bacteria makes a similar case for associations between alimentary dynamics and illness manifestations far outside the gastrointestinal tract. Surface distinctions between these two conceptual frameworks are apparently antipodal, the former championing emptiness and sterility, the latter abundance and restoration. Within both models, however, persists a common anxiety about the detrimental effects of civilisation on the body in relation to the natural world. As scientific understanding of the microbiome continues to mature, acknowledging the historical and moral parameters of its borrowed ecological idiom may facilitate critical distinctions between what is true and what feels like it should be.
Empathy and affect: what can empathied bodies do?
George Robert Ellison Marshall, Claire Hooker
While there has been much interest in the apparent benefits of empathy in improving outcomes of medical care, there is continuing concern over the philosophical nature of empathy. We suggest that part of the difficulty in coming to terms with empathy is due to the modernist dichotomies that have structured Western medical discourse, such that doctor and patient, knower and known, cognitive and emotional, subject and object are situated in oppositional terms, with the result that such accounts cannot coherently encompass an emotional doctor, or a patient as knower, or empathy as other than a possession or a trait. This paper explores what, by contrast, a radical critique of the Cartesian world view, in the form of a Deleuzean theoretical framework, would open up in new perspectives on empathy. We extend the framework of emotional geography to ask what happens when people are affected by empathy. We suggest that doctors and patients might be more productively understood as embodied subjects that are configured in their capacities by how they are affected by singular ‘events’ of empathy. We sketch out how the Deleuzean framework would make sense of these contentions and identify some possible implications for medical education and practice.
The anonymity paradox in patient engagement: reputation, risk and web-based public feedback
Ewen Speed, Charlie Davison, Caroline Gunnell
The UK National Health Service (NHS) has long espoused patient and public engagement. Recent years have seen increasing use of internet-based methods of collecting feedback about patient experience and public and staff views about NHS services and priorities. Often hailed as a means of facilitating participative democratic patient engagement, these processes raise a number of complex issues. A key aspect of it is the opportunity for comment to be made anonymously. Our research reveals an anonymity paradox whereby patients clearly demonstrate a perception that anonymity is a prerequisite for effective use of these feedback processes, whereas professionals demonstrate a perception that patient anonymity is a barrier to effective use. The risks of anonymity are constructed very differently by patients and professionals. Patient concerns around anonymity were not motivated by a general concern about a loss of privacy, but more that a positive identification might compromise future care. For professionals, concerns were voiced more around risks of reputational damage for specific practitioners or practices (in that anyone could say anything) and also that this anonymous feedback was available publicly and that it might go against the medical opinion of the professional. These concerns pointed to important differences in perceptions of patient and professional vulnerability. In the qualitative analysis that follows the key finding was that while anonymity makes service users feel less vulnerable, it can have the opposite effect on managers and clinical staff. This raises important implications for the use and utility of internet-based methods of collecting patient feedback.
Smallpox inoculation was introduced in Europe in the early eighteenth century and has been considered the first mass treatment of disease based on practical use of probability calculations and mathematical tools of computation. The article argues that these new approaches were deeply entangled with other rationalities, most emphatically that of exemplarity. Changes in inoculation methods around mid-century gradually changed the conceptualization of disease, seeing all cases as fundamentally equal, and thus making it more relevant to count them. Arithmetic changed the ways of thinking about smallpox epidemics, but new ways of conceptualizing disease were vital to making it a matter of arithmetic at all. The article investigates what happened when numbers and figures were introduced into medical matters: Who did the figures really concern, and what types of argument were they fitted into? How were numbers transformed into metaphors, and how did quantitative argument work together with arguments from exemplarity?
Patient education as a status passage in life – An ethnographic study exploring participation in a Danish group based patient education programme
Tine Mechlenborg Kristiansen, Rasmus Antoft
In this paper, we apply the theory of status passage to the empirical field of group-based patient education. On the basis of ethnographic fieldwork carried out in the context of a local Danish patient education programme aimed at people diagnosed with rheumatoid arthritis, we illustrate how participation in the programme for the recently diagnosed is a regularised status passage symbolising a transition in life from a novice to a more experienced person with chronic illness. We demonstrate how central properties of status passage are at play and how they are shaped by interactions among the different agents: participants, lay experts and health professionals. We highlight how the unique biographical situation of the individual and the individual timing of participation is an important factor affecting whether the patient education programme succeeds in regularising the status passage. We highlight the ambiguity of the role of the health professionals in directing the status passage of the recently diagnosed. On one hand, health professionals empowered the participants by giving them access to professional knowledge and guidance and thereby supporting the status passage. On the other hand, the effort to direct responsibility back to the participants did not consider individual biographical situations, and thereby risked leaving the participants frustrated and unable to pass. Further, we point to the special significance of the socialising process between the participants, with the recently diagnosed being the novices asking questions and seeking guidance and the lay experts and the experienced participants taking the role of coaches, guiding the recently diagnosed managing the status passage into chronic illness.
In countries throughout sub-Saharan Africa, antiretroviral therapy is seen as the solution to not only treat existing patients, but also to prevent the future spread of HIV. New policies for the prevention of mother-to-child transmission place women on lifelong treatment as soon as they are tested HIV positive. This article looks at how women understand this prescription for lifelong treatment. Drawing on interviews with HIV-positive women in Lilongwe, Malawi (N = 65) during July–September 2014, I examine the process of making treatment decisions, and why – despite increased access – women refuse or stop treatment. Using treatment for preventative purposes transforms the experience of HIV from an acute to a chronic condition where both the symptoms of disease and the efficacy of treatment are unclear. Women look for evidence of the cost and benefit of treatment through their personal experiences with illness and drug-taking. For some women, the benefits were clearer: they interpreted past illnesses as signs of HIV infection, and felt healthier and more economically productive afterwards. For others, taking treatment sometimes led to marital problems, and side effects made them feel worse and disrupted their ability to work. While women understand the health benefits of antiretroviral therapy, taking treatment does not always make sense in their present circumstances when there are costly physical and economic repercussions. This study builds on existing sociological research on medical decision-making by situating decisions in a broader political economy of changing HIV policies, economic conditions, and everyday uncertainty.
Fostering reflective trust between mothers and community health nurses to improve the effectiveness of health and nutrition efforts: An ethnographic study in Ghana, West Africa
Nana M. Ackatia-Armah, Nii Antiaye Addy, Shibani Ghosh, Laurette Dubé
As the global health agenda shifts from the Millennium Development Goals (MDGs) to Sustainable Development Goals (SDGs), the need for effective preventive health efforts has gained prominence, particularly in low-income regions with poor health and nutrition outcomes. To address needs in communities with limited access to health services and personnel, it is important to develop strategies that can improve the effectiveness of nurses as they interact with the populations they serve. We contribute to informing such strategies by explaining how mothers’ “reflective trust” in community health nurses develops as a key influencer in their health-related decision-making and behavior. Between December 2012 and June 2013, our ethnographic study gathered data in three adjacent rural and semi-rural communities in Ghana’s Eastern Region, using interviews with 39 nursing mothers, three focus groups – with mothers, health-workers, and community leaders – as well as 941 h of participant observation. We focused on interactions between mothers and nurses, highlighting tensions between communities’ traditions and messages that nurses bring, which are often based on modern science. We also investigated how mothers come to exhibit reflective trust in the nurses to make sense of traditional and scientific knowledge on infant feeding, and integrate them into their own feeding decisions. Our findings have global implications for effectively sustaining and scaling health and nutrition efforts through community approaches.
After geneticization (open access)
The concept of geneticization belongs to a style of thinking within the social sciences that refers to wide-ranging processes and consequences of genetic knowledge. Lippman’s original use of the term was political, anticipating the onerous consequences of genetic reductionism and determinism, while more recent engagements emphasise the productivity and heterogeneity of genetic concepts, practices and technologies. This paper reconstructs the geneticization concept, tracing it back to early political critiques of medicine. The argument is made that geneticization belongs to a style of constructionist thinking that obscures and exaggerates the essentializing effects of genetic knowledge. Following Hacking’s advice, we need a more literal sense of construction in terms of ‘assembly’ to give a clearer account of the relationship between processes and products. Using the ‘assemblage’ concept to explore the social ontology of genetics, the paper reviews three areas of the empirical literature on geneticization – disease classification, clinical practice and biosociality – to show that a new style of thinking has appeared within the social sciences. In the final assessment, the conditions that gave rise to geneticization are now obsolete. While it may serve as a useful ritual of debate, conceptually geneticization offers a limited account of the heterogeneity of socio-technical change.
Understanding global health and development partnerships: Perspectives from African and global health system professionals
Amy Barnes, Garrett W. Brown, Sophie Harman
Partnership is a key idea in current debates about global health and development assistance, yet little is known about what partnership means to those who are responsible for operationalising it or how it is experienced in practice. This is particularly the case in the context of African health systems. This paper explores how health professionals working in global health hubs and the health systems of South Africa, Tanzania and Zambia understand and experience partnership. Drawing on semi-structured interviews with 101 professionals based in each country, Washington DC and Geneva between October 2012 and June 2013, the paper makes four key arguments. First, partnership has a legitimating function in global health policy processes for international development institutions, government agencies and civil society organisations alike. Second, the practice of partnership generates idiosyncratic and complicated relationships that health professionals have to manage and navigate, often informally. Third, partnership is shaped by historical legacies, critical events, and independent consultants. Fourth, despite being an accepted part of global health policy, there is little shared understanding of what good partnership is meant to include or resemble in practice. Knowing more about the specific socio-cultural and political dynamics of partnership in different health system contexts is critical to equip health professionals with the skills to build the informal relations that are essential to effective partnership engagement.
In this article I discuss the definition of “the Antivaccine Movement” using the case of the French controversy over the safety of the 2009 pandemic flu vaccine. I show that the group of main actors who criticized the vaccine’s safety is heterogeneous. This heterogeneity can be found in the type of arguments mobilized to question the vaccine’s safety and in these actors’ likelihood of being involved in any vaccine-related controversies. I show that only a minority of these actors rejected vaccination in general and mobilized against all vaccination campaigns. Most of these actors only occasionally mobilized against a given vaccine or vaccination campaign and they did so to promote a political or cultural agenda that went beyond the vaccine itself. Using these results, I argue that in order to better understand how vaccine-related controversies emerge and why some activists devote time and resources to spread vaccine-critical arguments, social scientists should use three distinct concepts to refer to vaccine criticism: The Antivaccine Movement, the Marginally Antivaccine Movements and the Occasionally Vaccine Critical Movements. To do so would enable social scientists and public health experts to better understand the different ways in which vaccination can become politicized and the evolution of this politicization.
The doctor-patient relationship as a toolkit for uncertain clinical decisions
Medical uncertainty is a well-recognized problem in healthcare, yet how doctors make decisions in the face of uncertainty remains to be understood. This article draws on interdisciplinary literature on uncertainty and physician decision-making to examine a specific physician response to uncertainty: using the doctor-patient relationship as a toolkit. Additionally, I ask what happens to this process when the doctor-patient relationship becomes fragmented. I answer these questions by examining obstetrician-gynecologists’ narratives regarding how they make decisions when faced with uncertainty in childbirth. Between 2013 and 2014, I performed 21 semi-structured interviews with obstetricians in the United States. Obstetricians were selected to maximize variation in relevant physician, hospital, and practice characteristics. I began with grounded theory and moved to analytical coding of themes in relation to relevant literature. My analysis renders it evident that some physicians use the doctor-patient relationship as a toolkit for dealing with uncertainty. I analyze how this process varies for physicians in different models of care by comparing doctors’ experiences in models with continuous versus fragmented doctor-patient relationships. My key findings are that obstetricians in both models appealed to the ideal of patient-centered decision-making to cope with uncertain decisions, but in practice physicians in fragmented care faced a number of challenges to using the doctor-patient relationship as a toolkit for decision-making. These challenges led to additional uncertainties and in some cases to poor outcomes for doctors and/or patients; they also raised concerns about the reproduction of inequality. Thus organization of care delivery mitigates the efficacy of doctors’ use of the doctor-patient relationship toolkit for uncertain decisions. These findings have implications for theorizing about decision-making under conditions of medical uncertainty, for understanding how the doctor-patient relationship and model of care affect physician decision-making, and for forming policy on the optimal structure of medical work.
Attending to the material discursive constructions of the patient body within cone beam computed tomography (CBCT) imaging in radiotherapy treatments, in this paper I describe how bodies and machines co-create images. Using an analytical framework inspired by Science and Technology Studies and Feminist Technoscience, I describe the interplay between machines and bodies and the implications of materialities and agency. I argue that patients’ bodies play a part in producing scans within acceptable limits of machines as set out through organisational arrangements. In doing so I argue that bodies are fabricated into the order of work prescribed and embedded within and around the CBCT system, becoming, not only the subject of resulting images, but part of that image. The scan is not therefore a representation of a passive subject (a body) but co-produced by the work of practitioners and patients who actively control (and contort) and discipline their body according to protocols and instructions and the CBCT system. In this way I suggest they are ‘con-forming’ the CBCT image. A Virtual Abstract of this paper can be found at: https://youtu.be/qysCcBGuNSM.
Between disruption and continuity: challenges in maintaining the ‘biographical we’ when caring for a partner with a severe, chronic illness
Gunvor Aasbø, Kari Nyheim Solbrække, Ellen Kristvik, Anne Werner
Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose ‘biographical we’ as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.
Social inclusion and the Fatosphere: the role of an online weblogging community in fostering social inclusion
Marissa Dickins, Colette Browning, Susan Feldman, Samantha Thomas
Overweight and obesity are one of the most salient issues within society today, and the stigmatisation of overweight individuals is prevalent and widespread. Utilising interviews with 44 individuals who blog within an online fat acceptance community known as the Fatosphere, participants’ perceptions of inclusion and exclusion were examined within their offline and online environments. Additionally, the effect this had on their offline lives was examined. Participants described a profound sense of exclusion within their offline lives through three agencies: the medicalisation of ‘fatness’, the weight loss industry and the media, which echoed descriptions of moral judgement. Furthermore, a sense of inclusion was described within the Fatosphere through the protection and support that they found within this ‘safe space’. The effects of the Fatosphere influenced their lives in both negative and positive ways, allowing them to better deal with stigma and discrimination, but sometimes effecting their offline relationships in a negative manner. The Fatosphere provides a unique opportunity for corpulent individuals to engage in a community that is removed from the prominent weight-related discourse within modern society.
‘Coz football is what we all have’: masculinities, practice, performance and effervescence in a gender-sensitised weight-loss and healthy living programme for men (open access)
Christopher Bunn, Sally Wyke, Cindy M. Gray, Alice Maclean, Kate Hunt
In this paper we use a social practice approach to explore men’s experience of Football Fans in Training (FFIT), a group-based weight management programme for men that harnesses men’s symbolic attachment to professional football clubs to engage them in lifestyle change. FFIT is delivered by community coaches in clubs’ stadia and is gender-sensitised in relation to context, content and style of delivery. Using a ‘toolkit’ of concepts from the work of Bourdieu, Goffman and Durkheim we analysed data from 13 focus group discussions with participants, and fieldwork notes from programme observations to investigate the appeal and success of FFIT, and how it worked to support change. Our analysis builds on our work on the importance of shared symbolic commitment to the football club and being with ‘men like me’ to understand how the interaction context facilitated ‘effervescent’ experiences. These experiences encouraged men to make changes to their diet and physical activity, talk about them, practice performing them and implement them in their lives. Thus a social practice approach illuminated the social processes through which lifestyle change was achieved, and we argue that it can deepen and enrich both intervention design and evaluation.
Early Elegy: Smallpox
by Claudia Emerson
- The world has certified itself rid of
- all but the argument: to eradicate or not
- the small stock of variola frozen,
- quarantined—a dormancy it has
- refused, just once, for a woman behind a sterile
- lens, her glass slide a clearest, most
- becoming pane. How could it resist slipping
- away with her, that discrete first pock?
In 1979, public health officials announced the eradication of smallpox. This achievement was more than just an impressive demonstration of mass vaccination. It represented the ability of nations locked in a frigid Cold War to unite against a common enemy. From this point on smallpox became a prisoner of war, held hostage in the laboratory freezer or, to be more specific: two laboratory freezers. In 1984 the World Health Organization decided that only two entities could provide sufficient security to maintain freezers filled with scabs and cells that harbored smallpox: a Siberian lab called Vector in Novosibirsk and the other at the CDC in Atlanta.
The decision to allow two superpowers, the USSR and the US, to stockpile microbes as well as missiles provided cold comfort to experts concerned about germ warfare. Not only was there concern that one nation might choose to deploy smallpox as a weapon of mass destruction, there was also fear that the very idea that smallpox had been contained in two freezers was itself a fiction.
In 1987, virologist Frank Fenner asked members of the World Health Assembly to entertain the various ways in which smallpox could still reemerge to wreak havoc on humankind. This included the possibility that it might still be spread by itinerant Chinese variolators (China had only joined the WHO in 1972), that it could be harbored by an animal reservoir, that it might be released through a laboratory accident, or that a rogue scientist could sell it on the black market. Fenner’s recommendation to mitigate these hypothetical risks by destroying the remaining samples preserved in Soviet and American freezers was denied.
Since then, the eradication of smallpox has often been championed as a potent example of the ability of humans to gain control over nature. It has also become the source of speculative narratives about the hubris of such a vision. These narratives are unique examples of what I call biomedicine futures: speculative visions about what will be that blur the line between the possible and the actual, the rational and the irrational in ways that produce potential truths that exert a tangible impact on the present.
If practices of cryopreservation enabled the creation of repositories of the end of particular infectious epidemics, the co-production of fictional and scientific narratives have contributed to maintaining them. These narratives can be found in flow charts and planning documents as well as the reports of science writers, from Richard Preston’s 2002 best-selling account of bioweapons development Demon In the Freezer, to novels like Nelson DeMille’s 1997 Plum Island, which used the eponymous high-security government biorepository as the setting for a thriller.
Priscilla Wald, in her work on the “outbreak narrative” has argued that popular and fictional accounts of epidemics have served as a way to educate the public about the threat and science of deadly infections. Citing Michael Crichton’s Andromeda Strain, she also points out that fictional accounts of outbreaks do more than reflect and convey the lessons of science; they also supply some of the most common points of reference, which influence social transformation and disease emergence in their own right. This includes her documentation of the fact that Nobel Laureate and anti-germ warfare crusader Joshua Lederberg leaked the Ebola story to Preston. Decades earlier, Lederberg communicated about germ warfare with Michael Crichton upon the publication of the Andromeda Strain. When Crichton died in 2008, it was Preston who was asked to complete his novel Micro, a fictional critique of a corrupt bioprospecting enterprise.
In the case of smallpox, such narratives or hidden dialogues have informed the perpetual deferral of the destruction of the final “official” or symbolic specimens of the Cold War standoff. Even after Cold War tensions thawed, these two collections of smallpox remained in a state of suspended animation, renewing the logic of Cold War while generating still new apocalyptic anxieties. Take a recent example. In the summer of 2014 NIH scientists discovered six vials in a freezer in Bethesda that were subsequently confirmed as containing smallpox DNA. Soon after, the BBC examined fears that climate change could lead to the release of smallpox that had been inadvertently preserved in nature’s freezer, the arctic permafrost.
The specters of these twin threats of smallpox infection—one emerging from an improperly managed artificial frozen environment and the other from a natural environment transformed through human activity—were tamed by recourse to science fiction. Michael Lane of the CDC, who previously worked on smallpox eradication programs from 1970 to 1981, was not worried. He told one news outlet, “No one feels there’s a serious chance that global warming will melt the permafrost and unleash an epidemic.” While “no one” in Lane’s orbit at CDC may have be willing to go on record to admit climate change as a legitimate risk, the article in which he was quoted paired his succinct assertion with a cascade of speculation.
BUT: what an amazing plot possibility for a future biomedical thriller, as thawing corpses in the global north unleash waves of weird infectious terror on the people of the present day. Perhaps an oil exploration crew or a small group of archaeologists—or a few urban explorers, best friends taking a quick summer vacation to some ruined villages in the forest—find rotten body parts emerging from the mud and, unbeknownst to them, bring this virus back home to the city. It could be the plot of 28 Years Later.
Like something out of Jeff Long’s airport thriller Year Zero—in which an ancient virus is accidentally released from a vial of Jesus Christ’s own holy blood, leading to a global catastrophe—viruses once thought conquered emerge from the ice once again, virulent, unstoppable, and coming soon to a film screen near you.
Such narratives of both scientific speculation and science fiction colonize the present in ways that prepare their readers for the radical uncertainty of the future. The laboratory freezer gives officials only the illusion of control over the ultimate fate of smallpox. The best efforts at “planned hindsight,” the ability to view the present as a future past, will always involve the simultaneous conjuring and containment of fiction and fantasy.
The interplay of these speculative visions scramble the ability to distinguish fact from fiction, producing new kinds of risks from old, cold substrates. As a result, these freezers—both artificial and naturally-occurring—are made to incubate an end that is not yet over.
Joanna Radin is Assistant Professor of History of Science and Medicine at Yale, where she is also a member of the Section for the History of Medicine and Departments of History and Anthropology. Her research and writing focus on biomedical futures and the human life sciences since World War II. She is currently completing a monograph, forthcoming with University of Chicago Press, on the uses of cryopreservation in Cold War-era biomedical research.
[For this installment of the Top of the Heap series, I spoke with Anna Waldstein, who is an ecological anthropologist and lecturer in medical anthropology and ethnobotany at Kent University, UK.]
In response to discussions with my colleagues about ways to encourage our students to read more ethnographies, I designed a new assignment for “Anthropology of Health, Illness and Medicine,” the last time I taught it. Students were asked to read an ethnographic study with a medical anthropology theme (i.e. a “medical ethnography”) and to present a synopsis to their seminar group. My ulterior motive was to encourage students to read some of the medical ethnographies at the top of my heap, so that I could at least learn more about them, if I could not get around to reading them myself. In this respect, the assignment was only partially successful. The books at the top of my list were either not selected by any of the students, or were read by students in the seminar groups led by my colleague. However, several books that were (originally) much closer to the bottom of the heap (and some not even on the list of recommended ethnographies) generated memorable class discussions and have piqued my interest.
As I am getting ready to send my publisher the final version of my own forthcoming book on the “Hispanic health paradox” and “health sovereignty” in the United States, Gálvez’s (2011) Patient Citizens, Immigrant Mothers: Mexican Women, Public Prenatal Care, and the Birth-weight Paradox is at the top of the heap of books that I need to finish reading. The book explores reasons why Mexicans migrants living in the United States might have better maternal health outcomes than do American women, using ethnographic data on experiences of prenatal care in rural Mexico and New York City.
I actually wasn’t too surprised that no one selected Annemarie Mol’s (2003) The Body Multiple: Ontology in Medical Practice for the assignment. Although I have read various sections, I am intimidated enough by the two-texts-in-one format to have put off reading the book in its entirety. Nevertheless it is relevant to some of the recent thinking I have been doing about embodiment and I know that I will need to give it a proper read soon. MacPhee’s 2003 paper Medicine for the Heart: The Embodiment of Faith in Morocco, introduces a concept of the spiritual body that has been particularly relevant to my own recent work on the embodiment of Rastafari spirituality. I am especially looking forward to reading her 2012 book Vulnerability and the Art of Protection: Embodiment and Health Care in Moroccan Households.
While I didn’t see any presentations of MacPhee’s book, one of the students in my postgraduate seminar did present Sylvia Wing Önder’s 2007 We Have No Microbes Here: Healing Practices in a Turkish Black Sea Village, another medical ethnography on Islamic women. Many of the things the women of this patient-centered ethnography do for their families (provide home remedies and first-aid, pursue health care from outside the family when needed) sound similar to the things I have seen women do in my own work with Mexican migrants in the United States (and are no doubt similar to such things done by women all over the world). Since the student gifted me his copy of the book I really have no excuse not to read it.
For some reason fasting came up as a recurring theme in several meetings of the postgraduate seminar. So when one of the students presented Warin’s (2009) Abject Relations: Everyday Worlds of Anorexia the discussion that followed was set within this context. This book sounds like a refreshing new approach to understanding anorexia as a disorder of embodiment and social relations, more than an obsession with beauty, self-control and autonomy. Using an ethnographic approach it explores the “pro-ana” phenomenon, among other issues. One aspect of the book that particularly interests me is the use of bodily experience as a research method; apparently Warin’s pregnancy during the fieldwork enabled her to gain some sort of empathetic understanding of the embodied experience of anorectics.
One book that I will have to add to the list of recommended ethnographies (and my own personal heap) next year is João Biehl’s (2005) Vita: Life in a Zone of Social Abandonment, which was presented by another postgraduate student. I am as intrigued to learn more about the book’s apparently innovative methodological approach and ethnographic presentation as I am anxious to know more about its subject matter of what happens to the homeless and mentally ill in Brazil. Finally, although it’s not exactly a medical ethnography and therefore not on the list of recommendations I give my students, there is one more book that I would really like to read: Pedersen’s (2011) Not Quite Shamans: Spirit Worlds and Political Lives in Northern Mongolia. This book is about what happens to uncontrolled shamanic powers when state forces attempt to eradicate shamanism, and appeals to my interests in both spirituality and the effects of political forces on well-being.
Anna Waldstein is an ecological anthropologist with research and teaching interests in medical anthropology and ethnobotany. She is a lecturer and deputy Director for Taught Programmes, Anthropology; Programme Convenor for MA, MSc Environmental Anthropology; Programme Convenor for MA Social Anthropology at Kent University, UK. Her doctoral research focused on women’s popular medical knowledge and self-care practices in both indigenous and mestizo communities in Mexico and among Mexican migrants in the Southeastern United States. Recently, she has begun looking more closely at political dimensions of medicinal plant use and the historical relationship between medicine and social control. Her interest in popular medicine, herbal remedies, diaspora and biological citizenship have led her to the study of Rastafari livity (a Rasta word that refers to lifestyle and spirituality) and healing.
Image: Book Pile
Adia Benton and Sa’ed Atshan have edited a special issue of Culture, Medicine, and Psychiatry called The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. Here are the abstracts of the articles in this timely collection.
“Even War has Rules”: On Medical Neutrality and Legitimate Non-violence (open access)
Adia Benton, Sa’ed Atshan
[excerpt] This special issue is the result of a two-day symposium held at Brown University, which was co-sponsored by the Watson Institute, the Humanities Initiative and the Department of Anthropology at Brown University and the Science, Religion and Culture Program at Harvard Divinity School in May 2014. It broadly addresses the challenges that political conflicts pose to the practice of medical neutrality and impartiality by mostly local clinicians under conditions of state-sponsored and intrastate violence. The speakers at the symposium worked in places as diverse as the US, Sierra Leone, Mozambique, Pakistan, Egypt, Somalia, Israel/Palestine and Turkey. Although they represent a small sample of what was presented during the symposium, the papers in this issue contain ethnographic case studies that address the everyday negotiations of medical neutrality in times of crisis and kin concepts: global health diplomacy and humanitarian medicine. Together these papers highlight the conflicts, tensions and solidarities that politicize clinical spaces and clinical practice.
In this introduction, we will outline three themes that emerge in this set of papers, rather than providing a case-by-case summary of their contents. Together, the papers demonstrate that, as integral members of the communities in which they live and practice, doctors and other health workers are always positioned socially and politically. Medical ethics and international norms hold that medicine should be practiced impartially in situations of conflict, and that health care workers and patients be immune from attack. Medical neutrality—in these two senses of the term—is understood to be a universal moral norm, upheld in international law. Yet insights from medical anthropologists working in conflict-affected settings suggest that addressing social, political and institutional conditions shaping the possibilities of neutrality are a necessary first step, without which appeals to moral or even legal norms are not only insufficient, but may also be counterproductive.
Using data collected over nearly three years of ethnographic fieldwork in the Gilgit-Baltistan region of northern Pakistan, my paper explores hospital spaces, clinical services and treatment encounters as conduits for the expression and propagation of conflictive Shia-Sunni sectarianism. Where my prior research has investigated the political etiologies (Hamdy in Am Ethnol 35(4):553–569, 2008) associated with Gilgiti women’s experiences of childbirth during ‘tensions’, as Shia-Sunni hostilities are locally known, this paper focuses on healthcare providers’ professional and personal navigations of an episode of conflict whose epicentre was at the District Headquarter Hospital, Gilgit-Baltistan’s foremost government hospital. Through critical evaluation of the impacts of Shia-Sunni tensions on the social, administrative and clinical practices and consequences of medicine, my paper analyses the complex ways that clinics in crisis serve as zones of contact (Pratt in Profession 91:33–40, 1991) and abandonment (Biehl in Soc Text 68(19):131–149, 2001; Subjectivity: ethnographic investigations, 2007), in which neglect and harm are directed along lines of sectarian affiliation to produce vulnerability, spectacular violence and death for healthcare providers and patients.
Drawing on ethnographic research with Somalis, within aid organizations, and within health care facilities in the Somali Region of Ethiopia, this article argues that what is called “global health diplomacy,” despite its origins and articulations in interstate politics, is fundamentally local and interpersonal. As evidence, I outline two very different health programs in the Somali Region of Ethiopia, and how, in each, existing animosities and political grievances were either reinforced or undermined. I argue that the provision of health care in politically insecure and post-conflict settings like the Somali Region of Ethiopia is precarious but pivotal: medical encounters have the potential to either worsen the conditions in which conflicts and crises recur, or build new interpersonal and governmental relations of trust. Effective global health diplomacy, therefore, cannot be limited to building clinics and donating medicine, but must also explicitly include building positive relationships of trust between oppositional groups within clinical spaces.
During the 2013 Gezi protests in Turkey, volunteering health professionals provided on-site medical assistance to protesters faced with police violence characterized by the extensive use of riot control agents. This led to a government crackdown on the medical community and the criminalization of “unauthorized” first aid amidst international criticisms over violations of medical neutrality. Drawing from ethnographic observations, in-depth interviews with health care professionals, and archival research, this article ethnographically analyzes the polarized encounter between the Turkish government and medical professionals aligned with social protest. I demonstrate how the context of “atmospheric violence”—the extensive use of riot control agents like tear gas—brings about new politico-ethical spaces and dilemmas for healthcare professionals. I then analyze how Turkish health professionals framed their provision of health services to protestors in the language of medical humanitarianism, and how the state dismissed their claims to humanitarian neutrality by criminalizing emergency care. Exploring the vexed role that health workers and medical organizations played in the Gezi protests and the consequent political contestations over doctors’ ethical, professional, and political responsibilities, this article examines challenges to medical humanitarianism and neutrality at times of social protest in and beyond the Middle East.
Egypt’s Popular Uprising and the Stakes of Medical Neutrality
Sherine F. Hamdy, Soha Bayoumi
Amidst the recent political uprisings in the Arab region, physicians and other healthcare workers have found themselves in the crossfire. This paper focuses on Egypt’s doctors, paying special attention to how many have both appealed to and practiced medical neutrality as its own potent and contested political stance, particularly since the period of military rule following Mubarak’s removal from power. Our paper draws on interviews with physicians who served as volunteers in the field hospitals in the days of unrest and violence, and with others who played a major role in documenting protesters’ injuries, police brutality, and other forms of state violence against unarmed citizens. Based on interviews with doctors who belong to organizations such as “Tahrir Doctors” and “Doctors Without Rights,” our paper reveals how these doctors’ commitment to professional ethics put them at odds with the orders of military personnel, rendering their appeal to “medical neutrality” a weighty political act in and of itself.
This paper follows the testimony of Izzeldin Abuelaish, a Palestinian physician who bears witness to his experiences working, living, and suffering under Israeli rule. He presents his story as a doctor’s story, drawing on his identity as a medical professional to gain credibility and visibility and to challenge the limited legitimacy of Palestinian grievances. In this paper, I explore his testimony as a medical voice that at once recounts the suffering and loss endured by the Palestinian people and also struggles to negotiate the values associated with being a “reliable” witness. Consequently, I ethnographically examine the social life and reception of his story in Jewish-Israeli publics. In comparison with most Palestinian narratives, Abuelaish’s testimony achieved an extremely rare degree of visibility and sympathy, a phenomenon that calls out for analysis. I identify the boundaries that typically render Palestinian grievances invisible to Israeli publics and suggest how medicine’s self-proclaimed ethos of neutrality served as a channel for crossing them. Finally, I reflect on the political possibilities and limitations of medical witnessing to render suffering visible and arouse compassion toward those construed as a dangerous/enemy Other.
Clinic in Crisis Response: Imagined Immunities (open access)
Columbia University Press, 2014. 208 pages.
Flight Ways begins with a question: at what moment should a species be categorized as extinct? The extinction of Passenger Pigeons, for instance, could – in the most technical terms – be marked with the passing of the final bird, Martha. Little connection seems to exist, however, between the pigeons as they moved ‘through the sky in flocks of hundreds of millions of birds that blocked out the sun’ (11) and Martha’s isolated death in 1914. This prolonged period, between endangerment and the death of the last member of a species, is described by van Dooren as the ‘dull edge of extinction’: a period of time that sees, even as individual life forms exist, a break-down in the distinct form of life that characterises what it meant to be a particular species (11). Flight Ways engages in an ‘ethics of storytelling’ (9) which seeks to make the lives of five species of bird who currently live on this ‘dull edge’ visible: Albatrosses in the North Pacific, Vultures in India, a pocket of Little Penguins inhabiting Sydney harbour, Whooping Cranes in a U.S. breeding programme and, finally, Hawaiian Crows.
What needs to be emphasised is that this book has resonance far beyond its subject matter and – though it will clearly be of interest to those working within the Environmental Humanities or Animal Studies – Flight Ways is an important book that deserves a far wider audience. At the same time as presenting the stories of its birds in an evocative and politically urgent way, van Dooren manages to strike a delicate balance between theoretical innovation and accessibility. The book makes an incisive conceptual intervention into prominent cultural theories (vital materialist approaches, cosmopolitics, companion species) in a way that has broader resonance; it also engages with these theories in a lively way that would make them accessible to new audiences. Though perhaps not as explicitly ambitious as other contemporary texts that share the aim of crafting an entirely new ethics for the Anthropocene (e.g. Lorimer, 2015; Tsing, 2015), where Flight Ways stands out is in presenting its arguments in a way that enacts the ethics that it does put forward. The level of detail in van Dooren’s stories, moreover, give weight to his attempts to advance this body of theoretical work by asking how – once the entanglement between human and non-human is acknowledged – a meaningful politics can emerge. While we felt certain claims made in the book could use further interrogation, our overwhelming response is positive; here, therefore, we focus on Flight Ways’ strengths in terms of how it elaborates upon and extends existing work.
Theoretical elaborations: Entangled flight ways
Building on recent scholarship that has drawn vital materialism together with a focus on temporality (e.g. Bastian, 2013), Flight Ways foregrounds the need to develop a richer account of extinction, which takes into account the longer histories and future potentials of species, as well as their co-constitutive entanglement with their environment. The concept of the flight way itself helps to advance this body of theory through articulating the complex relationship between a species’ unique form of life, and the life forms who are members of that species. Through his detailed account of the precarious lives of albatrosses, for instance, van Dooren makes explicit how individual birds embody the immense amount of ‘intergenerational work: the skill, commitment, cooperation and hard work, alongside serendipity, that are required in each generation to carry the species through’ (27). The flight way, by extension, conveys what is lost when human activity – in this instance the plastics that converge in the ‘North Pacific Garbage Patch’ and ‘find their ways into albatross bellies’ (30) – disrupts both the lives of specific creatures and millennia of inter-generational learning.
Narratives about the entanglement of birds, humans, ecological contexts and temporalities are made still more explicit in van Dooren’s focus on vultures. The notion of entanglement derived from Barad (2007) has been engaged with by a large and ever-expanding number of texts across the environmental humanities and beyond; van Dooren’s story of vultures, however, does not just apply entanglement as a conceptual framework but gives this framework material weight. The story of Gyps Vultures in India makes explicit how the cultural and biological co-produce one another to forge complex lived ecologies. ‘Puller’ varieties of vulture, for instance, have historically thrived in India due to cattle from particular communities being left rather than consumed, and their bodies processed in ways that lent themselves to the birds’ particular needs (50). The use of the agricultural drug diclofenac, however, has led to an almost total extinction of the vultures. Given to cattle to overcome a number of issues like ‘lameness, mastitis, difficult birthing’ (53), the widespread use of the drug is tightly bound with high levels of poverty and the need to ‘keep animals working even when they are old and sick’ (53). The widespread loss of vultures due to diclofenac poisoning has, in turn, had stark implications for the flourishing of the human communities whose everyday life was entangled with vulture flight ways (although other communities, such as wild dogs, rats, and potentially even anthrax microbes, have been able to thrive in this new environment).
It is in this chapter in particular that Flight Ways displays its distinct capacity to both further conceptual debates, whilst acting as an accessible introduction to contemporary cultural theory. The chapter would be highly valuable to anyone seeking to grasp how Baradian notions of intra-action work in practice, or what it really means to claim that epistemologies, ontologies and ethics are irreducibly entangled. More than this, the chapter moves beyond the – now almost mundane – assertion that ‘everything is entangled’ to look at the specific, local forms of knotting and unknotting that are bound up with a species’ flight way.
Theoretical interventions: Theorising the violence of care
Perhaps the most decisive conceptual intervention is made, however, in van Dooren’s work on Whooping Cranes: a striking ethnographic case in itself, but one that also has implications for contemporary work about the politics of care in more-than-human worlds (e.g. Despret, 2004, 2013; Haraway, 2008; Puig de la Bellacasa, 2011). The cover of Flight Ways depicts a scene from this chapter, a biplane flying through the air teaching juvenile whooping cranes their traditional migration routes. The lengths that those engaged with this conservation project go to in order to save these endangered birds are extraordinary and frequently moving. What van Dooren also foregrounds, however, is the violence that is intrinsic to the care-work of conservation; indeed perhaps the most radical part of the book is the hyphen with which he links violence and care, in making clear that these processes – like the vultures and humans in chapter 2 – are irrevocably entangled.
At the core of this chapter is the assertion that: ‘Intimate care for some feathered bodies, some species, sits alongside the domination, coercion, and abandonment of others…’ (92). Care for the endurance of the species is clearly at the forefront of conservation work, with certain birds receiving incredibly patient care and attention to ensure they can not only survive but inherit the intergenerational flight ways of their predecessors. To facilitate this care, however, other species face more violent consequences: other – less endangered – crane species are used to incubate Whooping Crane eggs; quails serve as tasters to ensure the safety of crane food; geese and swans are used to see whether aircraft led migration is safe or feasible (114-5). Even particular whooping cranes adopt a ‘sacrificial’ role for the sake of their species and effectively become sperm banks for artificial insemination programmes, with these birds often being made to imprint on human handlers to make them less distressed about their physical manipulation for this end (111).
This conceptualisation of violent-care unsettles some of the pre-existing theoretical claims that have been made about the value of affective encounters in generating care and ethical responsibility towards individual animals (for an overview and related argument see Giraud and Hollin, 2016). Van Dooren elucidates how relationships between carers and birds – which have been praised in influential theoretical work (e.g. Despret, 2004) – is often the result of imprinting, ‘in which one partner knowingly manipulated the delicate developmental stages of the other to produce a lifelong attachment: a captive form of life’ (103, emphasis in original). This rich ethnographic material offers insights that go beyond being striking to verge on shocking; understanding imprinting as being part of a ‘regime of violent care’ offers a radical challenge, in particular, to Despret’s reading of Konrad Lorenz’s relationships with his animals as being co-shaping and convivial. This chapter is thus at the forefront of an emerging body of work that seeks to explore the ‘darker’ (Martin, Myers and Viseu, 2015) and more instrumental (Giraud and Hollin, 2016) side of care.
A final story
If it hasn’t already been made explicit, we felt this was a very valuable book that makes an important (and affective) intervention in existing conceptual debates. It is also, however, one that has potential to act in the way that van Dooren hopes, through enriching understandings of extinction and loss. This is perhaps reflected by a story we were told when reading van Dooren’s text. A work colleague spotted Flight Ways and took particular interest in the second chapter, describing how vultures were very much part of his own childhood in India as he played cricket under the watchful eye of the birds as they perched on the roof of his friend’s house. Whilst the children sometimes felt daunted by these large creatures, as they grew up and these striking companion species gradually vanished from sight, the vultures’ loss was felt and its cultural ramifications understood. Flight Ways’ strength is in its capacity to draw out the conceptual and environmental significance of moments such as this, in ways that hold the lives and temporalities of both individual birds and the intergenerational work of the species in view.
Barad K (2007) Meeting the Universe Halfway. Durham and New York: Duke.
Bastian M (2013) Political apologies and the question of a ‘shared time’ in the Australian context. Theory, Culture & Society. 30(5): 94-121.
Despret V (2004) The body we care for: Figures of anthropo-zoo-genesis. Body & Society, 10: 111–134.
Despret V (2013) Responding bodies and partial affinities in human-animal worlds. Theory, Culture & Society 30(7-8): 51–76.
Giraud E & Hollin GJ (2016) Care, laboratory beagles and affective utopia. Theory, Culture & Society. Epub ahead of print, 13 January 2016. DOI: 10.1177/0263276415619685
Haraway D (2008) When Species Meet. Minneapolis: University of Minnesota Press.
Martin A, Myers N, Viseu A (2015) The politics of care in technoscience. Social Studies of Science. 45(5): 625-641.
Puig de la Bellacasa M (2011) Matters of care in technoscience: Assembling neglected things. Social Studies of Science 41(1): 85–106.
Tsing AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins. Princeton & Oxford: Princeton University Press.
Storage and stockpiling as techniques of preparedness: Managing the bottlenecks of flu pandemics by Frédéric Keck
In the last twenty years, influenza has been considered by global health experts as a model for the emergence of new pathogens from animal reservoirs. In the logic of zoonoses, human disease is the tip of the iceberg constituted by a wide circulation of viruses – often asymptomatic – in animals; it is often described as an “evolutionary dead-end”. As the influenza virus is composed of a single-stranded segmented RNA, it mutates and reassorts between birds and pigs before spreading to humans and causing pandemics. The regularity of flu pandemics – 1918, 1957, 1968, 2009 – is explained by that the fact that the seasonal flu is replaced regularly by new flu viruses to which humans have no immunity. Consequently, to prepare for the emergence of new flu viruses, events whose probability cannot be calculated but whose consequences are catastrophic, samples have been stored and vaccines have been stockpiled, as if the iceberg of the animal reservoir could be visualized and controlled in the fridges where humans conserve live and attenuated viruses. Storage allows public health authorities to identify a new virus as it emerges by comparison with circulating viruses, and then to raise alarm from this early warning signal. Stockpiling provides a quick immunization of the population considered as having priority in the exposure to the new virus.
I am interested in storage and stockpiling as techniques to plan and visualize the mutations of flu viruses in the ordinary work of global health, in contrast with the extraordinary management of health crises. While stamping out the animal reservoir and vaccinating the human population are techniques used during the emergence of new flu viruses, storing samples and stockpiling vaccines is practiced before and after the emergence, as part of ordinary surveillance work. I want to describe these techniques of preparedness as modalities of accumulation of life – or biovalue – but also as modes of relations between humans and animals. To do this, I argue, we must be attentive to the representation of scarcity as bottlenecks: the emergence of a new virus is a rare event that presents new threats but also creates new possibilities for action. How do storage and stockpiling help global health experts to visualize and manage bottlenecks in the mutations of flu viruses? And what kinds of relations does it produce between humans and animals besides the model of eradication?
This question, unexpectedly, comes from the world of museums, in which I have worked for the last two years after several years observing avian influenza experts. I want to suggest that in the case of influenza, epidemics play the same role for global health institutions as exhibitions for museums: they are periods of time during which relations between humans and non-humans are exposed to the public before returning to the ordinary work through which they are stored. Before and after the outbreaks, microbiologists continue sampling and storing influenza strains, in the same way as curators in a museum continue acquiring and storing artefacts when there is no exhibition.
In 1948, the World Health Organization created a centre for the storage of influenza strains collected by national laboratories. It declared: “The desiccated viruses received by the Centre, will, as far as possible, be tested to determine their activity and, where appropriate, passaged to form a larger stock of desiccated material. It will thus constitute a sort of “museum” of desiccated strains of influenza. All laboratories that conduct research on the antigenic relations between strains may request the Centre to be kept informed of available strains and obtain the sending of a particular strain. We will periodically submit the museum strains – or at least those of them which seem to be important and representative – to passages in eggs or others to maintain stocks and avoid losses”. The goal of the WHO in 1948 was to centralize and standardize viral information independently from the occurrence of epidemics, and to produce the most adequate vaccine for the next seasonal and pandemic influenza viruses. Just as a museum does with exhibitions, the WHO would anticipate the next epidemic as an opportunity to display the knowledge it acquired on its collection of viruses.
One of the questions in the history of influenza research is what has changed since this dream of a total archive of flu strains was expressed by WHO. I argue that the shift from storage to stockpiling in labs and museums is one of the ways to capture this change. It is not only a shift in the numbers of actors of surveillance – as pharmaceutical industries entered the field of influenza research in the 1980’s due to a shortcut in the WHU budget – but also in the modes of visibility of pathogens circulating between animals and humans.
Two main events produced this shift, one concerning storage and the second stockpiling. At the end of the 1960’s, Graeme Laver and Robert Webster were walking along a beach in Canberra, where they were doing their PhD on influenza antibodies, when they saw dead seabirds on the shore. After joking that they had died from flu, they launched a massive program of trapping and sampling seabirds in the Great Barrier Reef to survey the patterns of Influenza A in birds. Martin Kaplan, a veterinarian who was the head of the WHO zoonoses program in Geneva, gave them funding for this research, which opposed the skepticism of Australian authorities. Webster and Laver imposed this bizarre idea that aquatic birds, despite their beautiful appearance, could be the reservoir of influenza, meaning that they carry the virus without being sick and shed it massively via fecal drops. Webster spent the rest of his career building a massive virus bank in the private hospital of St Jude in Memphis (Tennessee), where he could follow the mutations of flu strains in a large spectrum of species. Webster’s innovation was not only in the use of private and international funding to bypass national boundaries, but also in the modes of visualization of flu strains, from hemaglutination in eggs – the technique designed by his mentor Franck Macfarlane Burnet – to mutations in wild bird reservoirs.
Webster thus turned a black hole of surveillance into an abundance of information. In the 1970’s, China didn’t collaborate with the WHO in sending flu strains, despite the fact that it was considered as a starting point for the pandemics of 1957 and 1968. The founder of the department of microbiology at Hong Kong University, Kennedy Shortridge, in partnership with Robert Webster, showed that birds and pigs in south China were positive to influenza. He raised a global alert in 1997 when a new flu virus called H5N1 was found in chickens and humans in Hong Kong and later in mainland China. Microbiologists trained by Shortridge and Webster used this proximity between Hong Kong and mainland China to build a virus bank as a sentinel device where emerging viruses could immediately be traced to phylogenic ancestors.
A team of virologists I worked with had thus shown that the Fujian strain of H5N1 circulating in birds and humans could be traced to the massive vaccination of chickens by the Chinese government in 2005. According to them, this vaccination had created an evolutionary bottleneck in which new strains could develop and spread to humans. They were consequently refused by the Chinese government the access to Shantou on the Fujian coast, where they used to go to collect samples, but they argued that they could still produce new knowledge with the information in the sequences they had purified from collected samples. “All the information that we’ve had in the past ten years is because of this massive surveillance that’s been going on in this region. And when the H5N1 virus spreads, we could say: this is the genotype that is spreading, WHO could be preparing, we could send vaccines to these countries where the virus is endemic. But since 2006 when Shantou was closed we don’t know much about this region, so you suppose these nucleotides are spreading outside. Hong Kong is the perfect example of how transparent it can be. Surveillance in poultry, swine, wild birds, as soon as it’s done, it’s made public. And that doesn’t mean Hong Kong is a bad place, it means that everything that is done is reported. We’re sitting on a bunch of information. Viruses are there, still unknown. Even if we don’t do surveillance, we have enough information to work for five years.”
Here we see that preparedness as a technique of anticipation is also a technique of collection. Raising alarm on a new virus is possible from an accumulation of material and virtual information, samples collected in poultry farms or wild bird reserves and sequences stored on data banks. The phylogenic classification of flu strains doesn’t inquire about the end of the disease but about its beginning, and traces it back to points in evolution described as evolutionary bottlenecks. In the logic of storage, there is never too much information to trace a zoonotic event back to its animal reservoir. In a sense, the epidemic never stops beginning, as a phylogenic ancestor can always be found in a collection of samples that was previously unknown or not analysed.
By contrast, with stockpiling, bottlenecks appear at the end of the disease, in the populations targeted by vaccination. The term was probably introduced in the management of infectious diseases from the world of nuclear weapons by Edwin Kilbourne, who was the head of the US Strategic National Stockpile. He was the advisor to President Gerald Ford to whom he recommended in 1976 the administration of 200 million doses of vaccine against flu after a soldier died from a swine flu virus close to the 1918 pandemic virus. Among the first 43 million who received the vaccine, 535 came down with the Guillé-Barrain Syndrome, and the program was interrupted. Kilbourne maintained, however, that the production and stockpiling of vaccines targeting several flu strains (what he called a “barricade vaccine”) was necessary to mitigate the first cases before an adequate vaccine (or rampart vaccine) was produced.
One of the key issues for stockpiling is to identify bottlenecks in the distribution of medical equipment. The unequal access to vaccination is a vulnerability of the infrastructure for which public health agents must be prepared. Stockpiling is equipped with a list of professions that have priority access to vaccination (such as physicians or nurses) and with exercises of triage to detect patients who need emergency care. In the logic of stockpiling, epidemics never end, as there is always a population that has been left out of vaccination, and for which doses of vaccine should me made available. While storage traces bottlenecks in the past, as sites where intervention would have been possible to eradicate the epidemic before it started, stockpiling projects it in the future, as a space for mitigation of the epidemic.
Stockpiling is difficult to investigate ethnographically, as it follows a logic of military secret. The only interview I obtained on stockpiling was at the Animal Health Research Institute of Taiwan. The same institute stored viruses from birds at -80°C and stockpiled vaccines for chickens at +4°C, because the adjuvants in vaccines needed to be preserved. Taiwan started stockpiling vaccines against avian influenza after the SARS crisis in 2003, which had confirmed the scenario of a zoonotic virus coming from China, and the Institute preserved 10 million doses for H5 and 5 million for H7. There had never been H5N1 in Taiwan but a human case of H7N9 was declared in 2013 – a man traveling from Shanghai to Taipei – and a similar H7N9 was found in the viruses stored from wild birds. While China and Vietnam had been criticized for vaccinating their domestic poultry massively with vaccines produced locally, creating evolutionary bottlenecks in the selection of new strains, Taiwan chose to stockpile vaccines and only use them in case of an outbreak. But this created bottlenecks at the level of vaccine management.
The problem raised by stockpiling is: what to do with the excess vaccines produced for strains that are not circulating any more? After 18 months, any non-used vaccines are incinerated, and updated vaccines are bought. Members of the Taiwanese Parliament complained about the quantity of vaccines destroyed, which led the Taiwanese government to decrease the number of vaccines stockpiled and to contract with private companies capable of producing 3 million doses of vaccine within a week. A Taiwanese private pharmaceutical company, Adimmune, announced that it could produce between 5 and 10 million doses of vaccines for H7N9 in six to eight weeks, and was consequently awarded the right to develop the vaccine. While Taiwan cannot sell its vaccines to mainland China, it can give its supplementary vaccines to countries who recognize its legitimacy as part of a global health diplomacy. A similar logic was applied in France in 2009 with the 90 million doses of vaccines that had been ordered by the State and not used by the citizens: many of these doses were proposed to former French colonies such as Cambodia or Algeria.
Managing the stockpile of vaccines thus oscillates between two types of bottlenecks: the scarcity of vaccines for populations considered as priority, and the waste of vaccines that populations don’t need or refuse to take. In the first case, the epidemic never ends, while in the second case it ends too quickly. This is why public health authorities have to prepare for the epidemic without calculation of its duration, as if it was already there. Hence the connection between stockpiling and storage. Because the same viral strains coming from animal reservoirs are conserved in storage and stockpiling, with a few natural or artificial mutations, the epidemic for which stockpiling prepares is latently inscribed in the collections that are stored. The intentionality of the expression “after the end of disease” takes place in a wider set of relations between structure – the classification of viral strains – and events – the emergence of an epidemic. The pastoral logic of curing a population against a pathogen is anchored in a logic of collecting viruses common to animals and humans. There is no end to collecting: the list of entities that compose the world is indefinite.
Frédéric Keck is a researcher at the Laboratoire d’anthropologie sociale (Paris) and the head of the research department of the musée du quai Branly. Besides his own publications on the history of social anthropology and the biopolitics of zoonoses, he has co-edited several collective volumes : (with N . Vialles ) Des hommes malades des animaux, L’ Herne, 2012 ; (with A. Lakoff) Sentinel devices, Limn, 2013 ; (with F. Bretelle-Establet) Penser les épidémies depuis la Chine, le Japon et la Corée, Extrême-Orient Extrême-Occident, 37, 2014 ; (with N. Auray) Virus, Terrain, 64, 2015.
When I began my graphic memoir series, Aliceheimers, it focused just on life with my mother Alice before and during dementia. But the revelatory insight that she has retained, even during the late stages of this sickness, has led me to sometimes let the character “Alice” metamorphose into an odd sort of sage. Here, she and I explore the relationship between Medical Anthropology and Graphic Medicine. Alice’s deeply held beliefs from life before dementia combine with her mind opened by dementia, allowing me to imagine a quasi-academic conversation that we never could have had in real life.
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A writer, artist and anthropologist, Dana Walrath likes to cross borders and disciplines with her work. After years of using stories to teach medical students at University of Vermont’s College of Medicine, she turned to writing her own. Her award winning verse novel, Like Water on Stone, was completed during the year she spent as a Fulbright Scholar in Armenia. Her recently released graphic memoir Aliceheimer’s has brought her throughout North America and Eurasia to speak about the role of comics in healing including talks at TEDx Battenkill and TEDx Yerevan. Her recent essays have appeared in Slate and Foreign Policy. You can visit her at danawalrath.com.
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- Panel 1 of 3.
- Title: “Graphic Medicine and Medical Anthropology: An exogamous marriage or paraphyletic groups?”
- Image: Two kinds of family trees: comics (Mickey Mouse ears) and medicine (medical text) combine to form graphic medicine; biological and cultural anthropology (represented by book spines with names of some anthropological sages like Boas, Kroeber, Mead Leakey, Levi-Strauss) combine to form “Medical Anthropology”. These two form “an exogamous marriage”, or break out into “paraphyletic groups?” Two independent family trees each with their own history.
- Byline: Dana Walrath, Univesity of Vermont.
- Panel 2 of 3.
- Alice, a woman with round face and curly hair. Her clothes throughout the text are made up of cut-up pages from Alice in Wonderland.
- Alice points up to the panel above, says “What sort of crazy family trees are those?”
- Panel 3 of 3.
- Dana, a young woman with long hair, replies: “I’m exploring the relationship between the things I do.”
- Alice: “It would be easier if you spoke English.”
- Dana: “You were a biologist. You can get it.”
- Panel 1 of 3.
- Alice imagines an exoskeleton and endoskeleton, and eggs and sperm (thinking the word “gamete”).
- Alice says: “Exogamous: Like how I married Dave.”
- Panel 2 of 3.
- Alice imagines Greek root “para”, meaning “beside”, and relationships among vertebrates.
- Dana replies: “Yes… my father, an odar, a non-Armenian.”
- Alice says: “That makes for hybrid vigour you know.” and “Birds and Reptiles are paraphyletic.”
- Panel 3 of 3.
- Alice imagines a crocodile eating a bird.
- Panel 1 of 2.
- Narration text: “For Alice, Biology was the central dogma…”
- Alice says: “Just because you share a common ancestor doesn’t mean you have to get along. Take reptiles and birds, or my sister…”
- Panel 2 of 2.
- Alice stands in reverie before an array of white-coated doctors flanked by two staffs of the god Hermes, the Caduceus, instead of the correct Rods of Aesclepius, as though they were a pantheon of false gods.
- Narration text: “…and her reverence for its designated gods absolute.”
- Panel 1 of 4.
- Narration: “A reverence rooted in shame…”
- Alice, with eyes closed: “I was in a big ward in New York hospital with lots of kids to get my tonsils out. One nurse checked under my gown and called out to the others, “Hey, get a load of this!” It was my home-made underwear.”
- Panel 2 of 4.
- Narration: “…outrage at false prophets…”
- Alice, hands in the air: “They took my mother to a series of quacks! One of them said pulling her teeth would heal her joints so then she had no teeth. When that didn’t work they took her to a faith healer in Niagara Falls.”
- Panel 3 of 4.
- Narration: “…and passed on through the generations.”
- Alice: “You wouldn’t be alive if it weren’t for doctors. You’ve got hybrid vigour you know, you should be a doctor.”
- Panel 4 of 4.
- A fractured red cross.
- Narration: “It looked like more than basic biology to me. I saw…”
- Panel 1 of 4.
- Drama: A medical soap opera on a TV. Young woman says: “Oh, Doctor! How can I ever repay you!” Doctor replies: “Impossible, I know, now let me check your heart beat.”
- Panel 2 of 4.
- Subjugation: A pelvic exam of a very pregnant Dana. Doctor says “You know who you remind me of, Dana? Annie Hall.”
- Narration: That was a prenatal visit with the student health obstetrician. I chose midwives after that.
- Panel 3 of 4.
- Humiliation: Dana wears an open-backed hospital gown and stands on a scale.
- Panel 4 of 4.
- And super hero mumbo jumbo: Surgeon says “With my retractor and laser scalpel I excised the aneurysm detected on the angiogram impacting the vessels of the circle of Willis located precisely at A. cerebri media thus mitigating the subarachnoid…”
- Panel 1 of 2.
- Narration: “My cortisol levels ran high until I discovered medical anthropology.” An outline of Dana in a hospital gown opening a door with medical anthropology texts and insights found behind the door. Dana thinks “Liberation with an academic spit shine.”
- Panel 2 of 2.
- A rocket ship taking off. Launchpad scaffolding made of words that are part of the scientific approach of biomedicine: technology, scientists, data, power, experiments, research, fight, engineering, thruster, booster, conquer, go where no man has gone before, cure, fight, conquer, booster, experiment, engineering, biomechanics, microbes, invaders, viruses, conquer, fight, research.
- Narration: “A society’s medical system reflects its core beliefs. Our technological system is rooted in the deep scientific tradition of overcoming nature.”
- Panel 1 of 2.
- Alice very annoyed, shaking a finger and frowning. Alice says “What are you doing, Dana?!? This is very disrespectful. The idea that medicine is just a bunch of beliefs and practices and not pure science is absurd. I told you this anthropology business was a bad idea, that you’d never get a job. You should have gone to medical school and become a doctor then you’d know what’s what!”
- Narration: “No one likes their beliefs challenged.”
- Panels 2 through 9 of 9. Argument back and forth between Alice and Dana.
- Dana: “Medical schools like to hire anthropologists.”
- Alice: “What on earth for!”
- Dana: “Accreditation now requires training students to care for diverse patients.”
- Alice: “Bodies are all alike! It’s only minds that differ.”
- Dana: “You sound just like an old school doctor.”
- Alice: “Thank you. That’s very kind of you to say.”
- Dana: “But mind body dualism is just a social construct.”
- Alice: “You’re out of your mind! I dare you to show me.”
- Panel 1 of 2.
- Alice and Dana’s conversation continues.
- Above Dana, a diagram from Descartes showing the pineal gland, another image of sunlight and a bird. Dana says: “To overcome church prohibitions against cadaver dissection and legitimize scientific study of the human body, French philosopher René Descartes (1596-1650) separated the mind and the body, locating the soul in the pineal gland.”
- Above Alice, an image of a lightbulb and a bird, contrasting with the sunlight/bird image above Dana.
- Alice says: “Pineal. A pine cone-shaped, light-sensitive gland that lets birds synchronize their egg-laying with daylength.”
- Alice says: “Just where would any of us be without Descartes? Dead! How on earth would a surgeon have found your ruptured appendix?”
- Panel 2 of 2.
- Alice conversing with Ludwig Bemelmans’ children’s book character, Madeline.
- Madeline says: “I would have died, too.”
- Alice says: “You are just a character from a book, Madeline. You don’t really have an appendix and you can’t die!”
- Madeline replies: “True. I just turned 75 while Ludwig Bemelmans, my creator, died in 1962. Our first book has taught generations the core values of our medical system.”
- Panel 1 of 4.
- Alice sneering at Dana.
- Alice says: “Ok, miss smartypants, Dr. Dana, what truths did the generations glean from this charming book?”
- Panel 2 of 4.
- Dana hanging upside-down from a tree branch.
- Dana says: “That there are right and wrong ways to behave around sickness, that the ideal sick role is temporary, that when sick you will be cared for but you can’t want to be sick, that experts decide if and with what you are sick, that the body is like a care that experts can mechanically fix.”
- Panel 3 of 4.
- Alice yells: “Get down from there right now!!!”
- Panel 4 of 4.
- Alice and Dana have calmed down.
- Alice says: “All right. That’s better and that’s all true. The body breaks and doctors fix it.”
- Dana: “Socially true. Medical anthropologists locate sickness in three interconnected bodies: the physical, the social, and the political. That’s why medical schools hire us.”
- Alice: “Waste of money if you ask me.”
- Panel 1 of 1.
- Narration: “Medical anthropology avoids reducing the complexity of sickness and health into biological universals by incorporating biocultural interaction.”
- Image: Three nested figures: the political body as a looming monster, arms outstretched, decorated with dollar signs; inside, a human body (the physical body) with guts visible, surrounded by other stick figures that say “yes” or “no” representing the social body.
- Text surrounds the monster: “The political body determines who gets sick and well and how the social body gives meaning to physical states. The social body even defines the ideal physical body and then legitimizes practices such as plastic surgery, body piercing, or ritual scarring to attain that ideal. Medicine is a form of social control. Wealth means health.”
- Footnote: “For more see Scheper-Hughes and Lock (1987) MAQI: 6-41.”
- Panel 1 of 2.
- Dana and Alice conversing. Levi-Strauss’s magic field diagram embedded in Dana’s speech balloon.
- Alice: “What a pile of mumbo jumbo.”
- Dana: “Exactly! Mumbo jumbo lies at the heart of most healing systems. Experts have access to a world of secret knowledge that could consist of anything from spirits to science, patients and communities believe in those who can access the secrets.”
- Panel 2 of 2.
- A shaman with spirals, hands and other iconography in his speech balloon overlapping with that of an MD who has an EEG read-out in his speech balloon.
- Panel 1 of 4.
- Alice and Dana conversing.
- Alice: “Enough already! The content is bad enough but to mix comics with medicine is positively insulting. I want no part of it.”
- Dana: “But you were the whole reason I got into this.”
- Panel 2 of 4.
- Alice: “Me? How’s that?”
- Panel 3 of 4.
- Dana: “You have Alzheimer’s Disease.”
- Panel 4 of 4.
- Alice: “I forgot. What a lousy thing to have.”
- Panel 1 of 2.
- Conversation continues.
- Alice: “Why comics?”
- Dana: “Because when you lived with us you ate up every graphic narrative that came into the house. The pictures helped the story stick.”
- Alice: “I did?”
- Dana: “Also, we got along better during this sickness than we ever had. I admire and respect how you have handled it.”
- Alice: “You did?”
- Dana: “I wanted to tell that story. I wanted to help rewrite the dominant biomedical narrative.”
- Alice: “Why comics?”
- Dana: “Because the rule-breaking tradition of comics makes it the perfect medium for shifting the biomedical conceptualization of Alzheimer’s Disease.”
- Narration: “Biomedicine gives us a zombie story.”
- Panel 2 of 2.
- Alice falling down a zombie spiral.
- Panel 1 of 4.
- Alice with Zombie eyes and posture holds a distorted Alice in Wonderland
- Narration: “Without minds, who are we?”
- Panel 2 of 4.
- Alice up in a tower, yells “Save me, doctor!”
- A white-coated doctor runs past, says “Quick! To the lab!”.
- Narration: “And a cure, elusive.”
- Panel 3 of 4.
- Image: A spiral with squares marking biological birth and death.
- Narration: “But if we turn the zombie spirals into the lifecycle and add squares for biological birth and death – emergence from the womb or that last beat of the heart or that final breath – then these lines can show social birth and social death, when society confers personhood or takes it away.”
- Panel 4 of 4.
- Narration: “Stigma, silence, and social death surround states a society might fear or reject.”
- Alice with one zombie eye and the other eye open, says “Why comics?”
- Panel 1 of 1.
- Image: Alice travels around the sun.
- Narration: “Because comics undo social death. We see you. You are real. You make us smile. Comics let us get inside different ways of being, to understand experiences that we fear right down to the core of our medical system. Graphic medicine tackles everything from cancer to epilepsy to HIV to the entire spectrum of conditions of the “mind”. It takes the stigmatized and makes it safe. Graphic medicine gives us ways to see the world through the eyes of others, those who are hurting, to feel their stories and remember our own, and to heal. Healing is not the same as curing disease. It does not involve surgery or taking a pill. This social process depends on sharing stories and letting our collective memories meet. By meeting through story, we make peace and move on even if we are sick or hurt or dying.”
- Panel 1 of 3.
- Alice and Dana embrace.
- Alice says: “Thank you.”
- Dana says: “And thank you. … … So, what do you think: exogamous marriage or paraphyletic groups?”
- Alice: “Both. graphic medicine and medical anthropology arose from the same primordial swamp.”
- Panel 2 of 3.
- Swamp with steam rising from it. Swamp contains words bubbling to the surface: “By any means”, “Pain”, “Anger”, “Discontent”, “Frustration”, “Injustice”, “Feminism”, “This is broken.”
- Panel 3 of 3. Alice and Dana hold hands and smile.
- Alice says: “And the marriage is exogamous. Comics and medicine, like cultural and biological anthropology, have their own languages and traditions. This makes both graphic medicine and medical anthropology exogamous before they even hooked up.”
- Dana: “In anthropology the answer is always both, or malaria.”
- Alice: “That makes for hybrid vigour, you know.
- Dana: “Sure does.”