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Science, Medicine, and Anthropology
Mis à jour : il y a 7 heures 31 min

In The Journals – September 2017, part II by Christine Sargent

18 Octobre 2017 - 11:15pm

Hi folks! Without further ado, the second half of September’s installment:

Medical Anthropology Quarterly

Normal, Regular, and Standard: Scaling the Body through Fecal Microbial Transplants

Matthew J. Wolf‐Meyer

In 2013, the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) held a workshop to determine the risks and benefits associated with the experimental use of fecal microbial transplants to treat Clostridium difficile and other gastroenterological disorders. By focusing on the proceedings of the NIH–FDA workshop on the treatment of the human microbiome, the question of how medicine colonizes human bodies through microbial transplants raises questions about what an individual body is, how determinative of human health the microbiome is, and what the limits of molecular biomedicine are when the microbiome is taken into consideration. In the workshop presentations and discussion of this emerging treatment, experts used ideas about the normal, regular, and standard to move between scales of bodily analysis, from the microbial to the body politic, demonstrating how the individual and society are deeply influenced by the unruly community of microbial symbiotes that humans host.

Bioseguridad in Mexico: Pursuing Security between Local and Global Biologies

Emily Mannix Wanderer

In the aftermath of the 2009 outbreak of H1N1 influenza, scientists in Mexico sought to develop bioseguridad, that is, to protect biological life in Mexico by safely conducting research on infectious disease. Drawing on ethnographic research in laboratories and with scientists in Mexico, I look at how scientists make claims about local differences in regulations, infrastructure, bodies, and culture. The scientists working with infectious microbes sought to establish how different microbial ecologies, human immune systems, and political and regulatory systems made the risks of research different in Mexico from other countries. In developing bioseguridad, the idea of globalized biology that animates many public health projects was undermined as scientists attended to the elements of place that affected human health and safety. Scientists argued for the importance of local biologies, generating tension with global public health projects and regulations premised on the universality of biology.

Mohit’s Pharmakon: Symptom, Rotational Bodies, and Pharmaceuticals in Rural Rajasthan

Andrew McDowell

This article reexamines medical anthropology theories of symptom, illness, and disease to consider unregulated medical care in India. It builds on clinical observations, an inventory of the pharmaceuticals used by men who call themselves “Bengali doctors,” and their patients to understand medical care in a context that privileges symptom not disease. It draws on Derrida’s use of pharmakon to outline the complexities of care and embodiment and helps locate local and medical anthropology theories of symptom and pharmaceuticals within theories of the experiential body. It asks two key questions: What is medical care without disease and what are its implications on a local biology in which disease-based biomedicine is modified? Searching for a tentative answer, it works to bring medical anthropology’s interest in symptom back to the body without losing symptoms’ connection to political economies, individual experience, and localized biomedicine.

Shifting Gears: Triage and Traffic in Urban India

Harris Solomon

While studies of triage in clinical medical literature tend to focus on the knowledge required to carry out sorting, this article details the spatial features of triage. It is based on participation observation of traffic-related injuries in a Mumbai hospital casualty ward. It pays close attention to movement, specifically to adjustments, which include moving bodies, changes in treatment priority, and interruptions in care. The article draws on several ethnographic cases of injury and its aftermath that gather and separate patients, kin, and bystanders, all while a triage medical authority is charged with sorting them out. I argue that attention must be paid to differences in movement, which can be overlooked if medical decision-making is taken to be a static verdict. The explanatory significance of this distinction between adjustment and adjudication is a more nuanced understanding of triage as an iterative, spatial process.

Ethical Gifts?: An Analysis of Soap‐for‐data Transactions in Malawian Survey Research Worlds

Crystal Biruk

In 2008, thousands of Malawians received soap from an American research project as a gift for survey participation. Soap was deemed an ethical, non-coercive gift by researchers and ethics boards, but took on meanings that expressed recipients’ grievances and aspirations. Research participants reframed soap and research benefits as “rights” they are entitled to, wages for “work,” and a symbol of exploitation. Enlisting the perspectives of Malawi’s ethics board, demographers, Malawian fieldworkers, and research participants, I describe how soap is spoken about and operates in research worlds. I suggest that neither a prescriptive nor a situated frame for ethics—with their investments in standardization and attention to context, respectively—provides answers about how to compensate Malawian research participants. The conclusion gestures toward a reparative framework for thinking ethics that is responsive not just to project-based parameters but also to the histories and political economy in which projects (and ethics) are situated.

Ethics in Numbers: Auditing Cleft Treatment in Mexico and Beyond

Samuel Taylor‐Alexander

Plastic surgeons around the globe are implementing projects that mix audit with medical research to ensure and improve the level of care offered to patients with cleft lip and palate. Drawing on recent literature on “audit culture” and the global growth of “performance indicators” as a form of governance, I demonstrate the conjugation of ethics and the production of numerical indicators in cleft treatment. By standardizing documentation, cleft treatment audit programs facilitate evidence-based medicine and a form of reflexive self-governance. However, the abstraction that accompanies standardization is amplified as corollary data practices travel. In emerging as the answer to improving treatment, these projects lock out the politico–economic factors that mediate medical care in resource poor settings. This danger is compounded by the tendency of numerical governance to replace political conversation with technocratic expertise.

Electronic Health Records and the Disappearing Patient

Linda M. Hunt, Hannah S. Bell, Allison M. Baker, Heather A. Howard

With rapid consolidation of American medicine into large-scale corporations, corporate strategies are coming to the forefront in health care delivery, requiring a dramatic increase in the amount and detail of documentation, implemented through use of electronic health records (EHRs). EHRs are structured to prioritize the interests of a myriad of political and corporate stakeholders, resulting in a complex, multi-layered, and cumbersome health records system, largely not directly relevant to clinical care. Drawing on observations conducted in outpatient specialty clinics, we consider how EHRs prioritize institutional needs manifested as a long list of requisites that must be documented with each consultation. We argue that the EHR enforces the centrality of market principles in clinical medicine, redefining the clinician’s role to be less of a medical expert and more of an administrative bureaucrat, and transforming the patient into a digital entity with standardized conditions, treatments, and goals, without a personal narrative.

Neocolonialism and Health Care Access among Marshall Islanders in the United States

Michael R. Duke

In the Marshall Islands, a history of extensive nuclear weapons testing and covert biomedical research, coupled with the U.S.’s ongoing military presence in the country, has severely compromised the health of the local population. Despite the U.S.’s culpability in producing ill health along with high rates of emigration from the islands to the mainland United States, the large portion of Marshallese who reside in the United States face substantial barriers to accessing health care. Drawing from ongoing field research with a Marshallese community in Arkansas, this article explores the multifaceted impediments that U.S.-based Marshall Islanders face in receiving medical treatment. Calling on an expansive and inclusive notion of neocolonialism, I argue that Marshallese structural vulnerability with regard to health and health care treatment derives from their status as neocolonial subjects and from their limited claims to health-related deservingness associated with this status. [Marshall Islanders, health care access, neocolonialism, radiation exposure, immigrant health]

Science as Culture

Folded Futurity: Epigenetic Plasticity, Temporality, and New Thresholds of Fetal Life

Becky Mansfield

The life sciences are generating a transformative view of the biological body not as fixed and innate but as permeable to its environment and, therefore, plastic: development is open and malleable. Emblematic of these new sciences is environmental epigenetics, which investigates environmental factors that come into the body to shape expression of genes across the life course; prominent are environmental exposures during fetal development, which epigeneticists propose influence not only birth outcomes but also lifelong health. How does this new emphasis on permeability and plasticity during fetal development change how the fetus and fetal vulnerability are understood in the current scientific literature? Perspectives on genomic and reproductive temporality help conceptualize environmental epigenetics as a dynamic relationship between plasticity and determinism. This epigenetic temporality links past, present, and future in way that gives the fetus a keystone role as the vulnerable space-time of environmental epigenetics. Epigenetic temporality produces a new, folded futurity that brings multiple, future generations into the present, influenced by current environmental conditions. In doing this, epigenetics shifts thresholds of fetal vulnerability and intervention to incorporate other entities, including reproductive cells (gametes and primordial germ cells) and very young children. Epigenetic temporality folds in on itself, producing new versions of vulnerable, plastic life that require protection now, in the enduring present, even as the future toward which epigenetics is oriented constantly recedes.

Science, Technology, and Human Values

Synchronicity: Time, Technicians, Instruments, and Invisible Repair

Joeri Bruyninckx

Sociological studies of work and time have argued that academic temporalities are increasingly rationalized and rendered accountable, resulting in a divergence of planned and experienced time in academic work. Shared research facilities that provide platform technologies to large user pools are no exception to this, as its administrations seek to increase the profitability of limited instrument time. Based on an ethnographic study of three facilities at an American university, this article examines how diverging rhythms are enacted in organizational schedules and instrument work and kept aligned on the laboratory floor. Drawing insights from time studies and repair sociology, I argue that although technologies of time accounting provide powerful templates for action, they become effective only through ongoing “synchronization” work. Synchronization calls attention to discrete techniques and work practices, such as the adjustment of users’ bodies, user expectations, or work processes, that technical staff draw upon to resolve slippages between organizational rhythms and the temporal realities of data collection. This analysis suggests that technicians’ local and embodied (but also invisible) practices not only affect their own professional roles but also organizational stability and productivity in time-sensitive environments.

Air Pollution in the Making: Multiplicity and Difference in Interdisciplinary Data Practices

Emma Garnett

This article traces an emergent tension in an interdisciplinary public health project called Weather Health and Air Pollution (WHAP). The tension centered on two different kinds of data of air pollution: monitored and modeled data. Starting out with monitoring and modeling practices, the different ways in which they enacted air pollution are detailed. This multiplicity was problematic for the WHAP scientists, who were intent on working across disciplines, an initiative driven primarily by the epidemiologists who imbued the project with meaning and value as the protagonists of “health.” To work collaboratively implies a stable, singular, and shared research object, however: one kind of data, one version of air pollution. In detailing two attempts by researchers to address the inadequacies of modeled and monitored data, this article explores the ways in which difference and multiplicity were negotiated and transformed. In doing so, this article suggests that it is the mobility and instability of data that are particularly fruitful for exploring the facilitation and enactment of new realities, while also making explicit the emergent problematics and partialities which inevitably result.

Social Science & Medicine

Same medicine, different reasons: Comparing women’s bodily experiences of producing eggs for pregnancy or for profit

Rene Almeling, Iris L. Willey

 Women doing in vitro fertilization (IVF) to have a child describe it as painful and emotionally draining. Egg donors undergo the same medical regimen for a different reason – to produce eggs for another woman in exchange for thousands of dollars – and describe it as quick and relatively painless. Medical researchers typically compare bodily responses by variables such as gender, age, and health status. We use the case of “egg production” to propose a new factor that may be an important source of variation in bodily experience: an individual’s reason for undergoing the medical intervention in the first place. Using cluster analysis to analyze an original survey of 50 IVF patients and 62 egg donors from the United States, we find two distinct kinds of bodily experiences – “less intense” and “more intense” – and the intensity of one’s experience is associated with one’s reason for producing eggs: either to become pregnant or to donate them for money.

Medication takeovers: Covert druggings and behavioral control in Alzheimer’s

Brandon Berry, Ester Carolina Apesoa-Varano

Older adults consume the most prescription medication in the U.S. For those who develop Alzheimer’s disease, risk of medication misuse increases with the progression of the disease. Family members commonly intervene to lessen risks by taking over the management and administering of a medication regimen. Despite the potential for grave harm around the misuse of powerful drugs, few studies provide insight into the household social context of medication use for this disease. Drawing on 60 in-depth interviews conducted in four waves over 2.5 years, this study investigates how family members administered prescription and over-the-counter medications to elders with Alzheimer’s. The findings detail how family members initially created and enacted the role of proxy-administrator to avoid self-administration errors and then expanded the role to manage disruptive behaviors. During this process, family members perceived themselves as working in partnership with doctors, especially in the effort to craft a regimen that controlled the affected individual’s mood and sleep/wake cycle. The paper concludes by discussing the implications that family members used medications to improve conformity to a preferred household social order. The study offers conceptual advances in understanding 1) the process of proxy-administration in Alzheimer’s care and 2) the role of proxy-administrators in the medicalization of deviant behavior.

Sociology of Health and Illness

Engaging conceptions of identity in a context of medical pluralism: explaining treatment choices for everyday illness in Niger

Kelley Sams

This article uses ethnographic research to reflect upon how the treatment of ‘everyday’ illnesses in Niger engages concepts of social identity. Inspired by Bourdieu’s concept of social distinction, as well as Appadurai’s edited volume on the ‘social lives’ of ‘things’, I present an analysis of how medications are understood by their users in terms of social and ideological meaning in one rural Hausa village. Decisions about medication choice were framed by three main themes: belonging to the ‘modern’ world, ‘traditional’ Hausa culture, and religious identity. This article does not argue that these notions of identity fully explain medication use, nor necessarily predict treatment choices. The purpose of this paper is to reflect on the dynamic meanings given to treatment decisions after they have been made, attributed to the medications themselves and negotiated through their circulation in a context where multiple medical systems are drawn from to manage illness. Producers and sellers of medication also engage these meaning-centred concepts, which have theoretical and practical interest for the social sciences and public health.

Keeping out and getting in: reframing emergency department gatekeeping as structural competence

Mara Buchbinder

Sociologists have tended to frame medical gatekeeping as an exclusionary social practice, delineating how practitioners and clerical staff police the moral boundaries of medicine by keeping out patients who are categorised as ‘bad’, ‘deviant’, or otherwise problematic. Yet medical gatekeeping, understood more broadly, can include not only keeping patients out of particular clinical settings, but also redirecting them to alternative sources of care. In this article, I draw on qualitative analysis of audio-recorded patient-provider interactions in a United States emergency department (ED) to illustrate medical gatekeeping as a two-step process of, first, categorising certain patient complaints as unsuitable for treatment within a particular setting, and second, diverting patients to alternative sites for care. I refer to these as the restrictive and facilitative components of medical gatekeeping to denote how each relates to patients’ access to care, recognising that both components of medical gatekeeping are part of a coordinated organisational strategy for managing resource scarcity. By illustrating how ED providers reveal intimate knowledge of structural vulnerabilities in diverting socioeconomically disadvantaged patients with chronic back pain to clinical sites that are better equipped to provide care, I suggest that we rethink the emphasis on restrictive practices in sociological accounts of medical gatekeeping.

Book forum: Emilia Sanabria’s Plastic Bodies: Sex Hormones and Menstrual Suppression in Brazil by Eugene Raikhel

18 Octobre 2017 - 9:28pm

We are very pleased to bring you a set of thoughtful engagements with Emilia Sanabria’s remarkable book, Plastic Bodies: Sex Hormones and Menstrual Suppression in Brazil (Duke University Press, 2016).  As you’ll see from the commentaries, Plastic Bodies is already well on its way to becoming a touchstone in the medical anthropology and STS literatures on gender, bodies, and pharmaceuticals.

 

Plastic Bodies, plastic lives: ambiguity, corporality and change in Brazil
Elena Calvo-González
Federal University of Bahia, Brazil

Fluid hormones
Anita Hardon
University of Amsterdam

How to deal with the politics of body plasticity?
Daniela Tonelli Manica
Federal University of Rio de Janeiro

Plastic bodies
Emily Yates-Doerr
University of Amsterdam

A response
Emilia Sanabria
Ecole Normale Supérieure de Lyon

 

Download pdf of book forum

 

Toxicity by Danny Hoffman

16 Octobre 2017 - 6:49pm

1. Toxicity names forces for which there is no remediation.

Ibrahim is a tour guide in the Senegalese capital, Dakar.  His carefully crafted tour takes you around the city.  But it builds steadily to what is clearly, for him, the grand finale.  And indeed, what Ibrahim most wants you to see is a marvel: the Monument to the African Renaissance.  160ft high, it is the tallest statue in Africa.  It sits at the highest point in the city.  Built by North Koreans, it is a Socialist Realist fantasy: a bare chested, muscle bound man lifting a baby in one hand and squeezing a half-naked, diminutive woman with the other.  Senegalese president  Abdoulaye Wade commissioned the monument, and although funded by the Senegalese state, his family takes a third of all proceeds from ticket sales.  Even members of Senegal’s parliament call the Monument a $27 million crime, and the results a monstrous waste.  

 

It is impossible to photograph the Monument to the African Renaissance.  It is colossal.  There is no place from which to capture its enormity or its absurdity.  The foreign tourists and local schoolchildren who climb the steps of the monument cannot be positioned to give it scale.  But Ibrahim is helpful here.  He points out details that give the Monument to the African Renaissance meaning.  Look at the woman, he says.  She is pointing downward, straight to Gorée Island, Senegal’s most famous slaving port.  She is, Ibrahim says, pointing to Senegal’s past. 

And look at the baby.  He is pointing upward.  He is pointing toward the future.  He is pointing directly to New York.  Ibrahim pauses for effect.  And then, with an expression that is impossible to read, he says it again.  New York.  He is pointing to New York. 

Waste is an old topic in social theory.  What the philosopher George Bataille called “the accursed share” (1991)  and anthropologist Mary Douglas “matter out of place” (1996) is integral to how we function as social beings.  Trash defines the limits of the acceptable and unacceptable, and what we define as waste defines who we are.  Labelling certain bodies and populations “trash” is the weapon of racial hierarchy and racist economic orders.  Labelling practices wasteful or polluting is the foundation of economic exclusion, the appropriation of resources, and the criminalization of populations.  Making and disposing of waste is, one might say, the foundation of both politics and capital.   

But what about the toxic?   It seems a different order of term.  A poison beyond matter-out-of-place, something more than the by-products of an existing order.  Is there need for a term that names what cannot be reclaimed?  A thing that produces nothing, that destroys without creation? 

Africa may not be unique in this regard, but there does seem across the continent an imperative to name a space beyond remediation.  Forces that do not simply reinforce the existing order, however unequal or unjust.  But a poison that cannot be processed with existing tools and strategies.  The toxicity of slavery as an undressed wound.  The toxicity of an African leadership whose cynicism is absolute.   The toxicity of a politics that pits squatters and gleaners against environmentalists.  The toxicity of an African Renaissance that can only be imagined as a monstrous finger pointing toward New York. 

 

2. Toxicity transcends material and metaphor.

Three men paddle a canoe through the slow waters of the St. Paul River in central Liberia.  It is late in the day, the farm work done.  From a stick raft, they will spend the next hours diving to the river bottom, hauling gravel, panning for diamonds and gold. 

It is a common occupation for men in this region.  In the constellation of villages that surround Bong Mine Town, there is no salaried work.  The Liberian war closed the German-owned iron ore mine that gives Bong Mine its name.  Small scale agriculture provides a subsistence living but little more.  So the men of the villages scratch the earth and dredge the rivers.  Their tools are simple: shovels, screens, bags, water, and bodies.  But the work is made easier with machines that spew petrol and diesel, poisoning the river and thundering with constant, deafening sound.  Mercury, when they can get it, makes the process even more efficient.  But it, too, sickens the miners and everyone around them. 

The iron mines also polluted and eroded the landscape, but the company town had schools and shops.  The company exploited their labor, but it paid on time and provided for their basic needs.  If they needed it, they in turn had at their disposal the tools of workers everywhere: the strike, the go-slow, work-to-rule campaigns.  As resource extraction industries have done across the continent, the iron ore mine shaped the landscape of central Liberia and sculpted the social imaginary of modernity and belonging for generations of Africans laborers.  One of the young men tells me that his strongest childhood memory is of family outings to the long-closed ice cream shop.  

Artisanal mining in the ruins of the iron ore mines is, by contrast, a toxic affair.  Under the best of circumstances it breaks the men’s bodies down fast.  Accidents are common.  Mercury pollutes the waters and lives in the crops, the fish, and the miners’ bodies.  Fuel flavors the water in which the men work, children play and bathe and everyone drinks.  The breathing apparatuses are crude and dangerous; they can burst a lung or suffocate a miner stuck under the murky waters of the St. Paul. 

Artisanal mining on the St. Paul isn’t new, but its political economy has changed since the closing of the iron mine.  The minerals that the earth yields now are unpredictable.  They don’t support the infrastructure of a company town.  The village school functions intermittently, and when it does it is crowded and poorly staffed.  The local chiefs deal with a wandering workforce of young men who drift between mine sites, chasing rumors of big yields and new discoveries.  In lieu of paychecks and predictability the miners place an all-in bet, staking bodies and lives on a gamble that – if it succeeds – will radically alter their futures. 

Because the stakes are high and the material stuff of gold and diamonds is so easily stolen, there is little trust on the mines.  The river is full of stories of miners who cut friends’ breathing tubes the moment they discover a gem or a rich gold deposit.  Landowners and claim holders sit for hours on the river bank, alert for signs of theft.  “Mining is guerilla war,” is a common refrain, and the stories of brothers stealing from brothers, lovers pilfering the days’ yield, long-time friends murdering one another over small bits of stone are as common as the stories of miners who become sick and injured and destroyed by the work.

To say that toxic matter is ontologically unfixed is to say that something may not be toxic under all circumstances, at all times or to all those who come in contact with it.  But to say that the toxic is ontologically indeterminate also means that it erases the distinction between material and metaphor.  Is a thing poisonous to the human body? To the planet?  Poisonous to the social fabric?  The redundancy of these questions may be in part what defines an African Anthropocene.  

 

3. To inhabit a toxic landscape, one must grow impossible new organs

The Door of No Return is the symbol of Senegal’s Gorée Island.  Though relatively unimportant as a site in the trans-Atlantic slaving economy, it has become the signifier of slavery’s original wound.  Senegal’s tourist economy depends to a large degree on one small opening in one small structure on the easternmost edge of the Atlantic, a tiny framed view of the open sea.

Tour guides point out the various holding cells for men, women and children.  Each has a version of the story of Nelson Mandela or Barack Obama visiting the site, gazing through the small opening in the wall and confronting the toxic legacy of the traffic in human bodies. 

Up the hill above the House of Slaves and the Door of No Return is a different collection of monuments.  They are more ambiguous.  The site was a Second World War military installation, an outpost for scanning the sea.  Today there is an artists’ colony in the ruins, selling weirdly beautiful creations made from trash claimed from the beaches.  For the benefit of foreign tourists, the artists do little to dispel the myth of an inherent African genius for artistic creation and the hill has the feel of a mad hippy compound of auto-didacts.  But many of the residents are graduates of the Dakar School of Fine Arts, and they can speak with critical precision about the artistic legacies on which they draw and to which they belong.  Here, too, there is space to contemplate the sea.  But rather than framed by a melancholic Door of No Return, it is a view framed by a ludic embrace of recycling, a mad celebration of the creative and the absurd. 

New monuments are everywhere.  The French city of Nantes, once that country’s largest slave port, has its new Memorial to the Abolition of Slavery.  It is a moving space intended to invoke the inner holds of slaving ships.   

It is, according to Nantes’ mayor, “an invitation to reflect on a dark chapter in the history of our city.”  People trickle through the space, reflecting.   

But above ground, not far away, a large and cosmopolitan group of youth assembles beneath a surreal public art project.  It is a curved soccer pitch with distorted goals, a dream field that only looks correctly proportioned when reflected in a gigantic curved mirror.  Together this group of French, West African, and North African youth figure out how to play their games on a wildly distorted field. 

Up the Loire river at the mouth of the sea is another monument to slavery.  Artist Jean-Claude Mayo’s 1989 monument mixes elements intended to invoke the ribs of a slave ship.  Three humanoid figures climb from the sea, symbolically invoking the stages of liberation from bondage.  Like Dakar’s “Monument to the African Renaissance,” Mayo’s sculpture is impossible to photograph.  Not because of its scale in this case, but because ubiquitous seagulls disrupt the monument’s silhouettes. 

Across the street, a muralist has painted the massive faces of two women, one white, the other black.  It commemorates nothing.  One cannot photograph these gigantic monuments, either, without including extraneous elements.  But unlike the monuments to the abolition of slavery, those random bits of daily life that intrude on the frame do not distract from the message of the monument.  They make their own statements, giving extra layers of meaning and capitalizing on the productive, rather than destructive, potential in the absurd. 

To inhabit a toxic landscape, one must become mutant, learn to grow new and impossible organs, as the theorist Fredrick Jameson once said of postmodern architecture (1991).  This was also the insight in the philosopher Achille Mbembe’s controversial essay on African “self-writing” (2002), in which he argued that African intellectual history lacked a way to meaningfully come to terms with the legacy of colonialism, slavery and apartheid.  The dominant frameworks for dealing with the continent’s historical trauma were meta-narratives that offered no useful proposals for responding to a fractured and violent present. 

To paraphrase Mbembe in the vocabulary of our collective project, the present for many Africans is toxic.  It is a space outside remediation, space that cannot be understood even according to the hierarchical logic of waste and productive destruction.  Its toxic effects on African bodies and African subjects, as on African landscapes, is simultaneously material and metaphoric.  And yet within this toxic landscape there are emergent, mutant forms.  Moments of aesthetic crossing and absurd conjuncture that might, in fact, hint at uncodified modes of habitation.  They are the sites not of remediation, but hopeful episodes of living differently.  They work as new growths, largely unmoored from the past and, as Sharad Chari puts it in his essay here, “a way of thinking of political futures that cannot quite yet be spelled out in words alone.”  The present is toxic.  But within it, impossible new bodies are born. 

 

Danny Hoffman is an Associate Professor in the Department of Anthropology at the University of Washington.  His first book, The War Machines: Young Men and Violence in Sierra Leone and Liberia (Duke University Press, 2011) is an ethnography of militia movements and youth mobilization in the Mano River region of West Africa.  Hoffman’s second monograph, Monrovia Modern: Urban Form and Political Imagination in Liberia (Duke University Press, 2017) is an exploration of the limits and possibilities for urban citizenship afforded by the built environment of Liberia’s capital city.  A former photojournalist, Hoffman also works in still photography and film to explore issues of violence, labor and visual culture in contemporary West Africa.

 

References

Bataille, Georges. 1991. The Accursed Share: An Essay on General Economy, Vol. 1. New York: Zone Books. 

Douglas, Mary. 1996. Purity and Danger: An Analysis of Concepts of Pollution and Taboo. New York: Routledge. 

Jameson, Fredric. 1991. Postmodernism, or, the Cultural Logic of Late Capitalism. Durham: Duke University Press. 

Mbembe, Achille. 2002. “African Modes of Self-Writing,” Public Culture 14(1): 239-273. 

History, Ethics, and the Environmental Archive by M. X. Mitchell

12 Octobre 2017 - 10:22pm

In Marshallese culture the environment itself is sacred.[1] Yet American colonizers used ancestral environments in the Marshall Islands for devastating nuclear weapons testing and related environmental research. Once central to emerging understandings of radiobiology, geology, and ecology, archival records of environmental research in the Marshall Islands offer a wealth of data to historians of science and the environment. These data are the fruits of exploitative, extractive, and destructive scientific enterprise. What ethical obligations attach to historians’ use of such data? What are the ethics of the environmental archive?

At Yale University’s recent Critical Histories and Activist Futures conference, I reflected on these questions in the context of my work on the legal history of nuclear weapons testing in the Marshall Islands. Located in the mid-Pacific region of Oceania just north of the equator, the Marshall Islands were the site of sixty-seven American nuclear weapons tests conducted at Bikini and Enewetak atolls between 1946 and 1958. The United States tested its largest and most powerful weapons in the Marshall Islands, including the first hydrogen bomb and the largest nuclear device ever detonated by the United States. Because of these tests, atolls within the Marshall Islands have been critical sites of environmental research for the past seventy years. Scientists scrambled to document atoll environments before they were contaminated and, afterwards, used contamination as a tracing mechanism to understand biological, ecological, and geological processes.

Cold War conflicts over research in the Marshalls highlighted how the environment as a concept was both culturally contingent and ethically fraught. Where Westerners typically designated “the environment” as that which surrounds and exists apart from the human body, Islanders saw no clear separation. As I discussed in a recent article, during the 1970s, Islanders from Enewetak Atoll used American conceptions of bodily integrity and informed consent to explain this difference. They argued that cutting Islanders off from their ancestral atolls was like amputating an American’s limb without consent. Islanders elaborated that, for them, the body-environment connection is fundamental and inseverable.[2]

Marshallese beliefs about abiding connections between people and their ancestral atolls endure to the present day. Calling on these beliefs, a resident of Enewetak recently recounted to me that she learned of ongoing, privately funded American experimentation only after her young sons found an American student on the family’s ancestral lands collecting coconuts for use in radiological testing. “Can you believe it?” she asked rhetorically. “Haven’t they taken enough from us already?”[3] What happens, then, when environmental research becomes environmental data, and environmental data are collected and taken to faraway archives?

Most historical work contemplating the ethics of archival practices has focused on biological archives, which historians have recognized as ethically complicated sites.[4] As the Marshallese case illustrates, however, where environmental science was predicated on dispossession, violence, and the infliction of suffering, environmental archives may raise similar and additional ethical dilemmas.

Not least, environmental archives raise questions concerning conflicting ontologies and belief systems. As historians of science have explored, scientific archives often incorporate scientific researchers’ underlying assumptions.[5] Environmental archives of the twentieth century United States, for example, typically incorporate assumptions that there is an inherent distinction between human bodies and the environment, between data and referents, and between past and present. These assumptions do not necessarily hold in the Marshallese worldview, where even data about one’s ancestral atoll may be seen as special or sacred. An environmental archive may be much more than a simple reminder of a dark past; It can be a site of ongoing harm in the present. How, then, should historians engage with archival materials and with communities who see environmental data in a different light—as a present-day connection to a sacred person or place or a memory of a grievous injury?

Environmental archives also raise questions of access.[6] Locating archival documents is part of the historian’s craft, and traveling to collections is a central—often financially supported—part of historical employment. For members of affected communities, however, even tracking down documents may be a daunting task. Accessing documents often raises insurmountable financial difficulties, particularly when documents have been moved to far-off archives in colonial metropoles. In the context of the Marshall Islands, for example, the vast majority of environmental data drawn from nuclear testing are held in the United States. Although the Clinton administration made some documents available online, subsequent administrations removed them from government databases. Historian of science Alex Wellerstein and archivists William Burr and Trudy Huskamp Peterson have worked with the Republic of the Marshall Islands’ government to recover and make available online documents removed from the database.[7] Nevertheless, mountains of environmental data were never part of U.S. digitization initiatives and remain housed in archival collections across the United States. Islanders have their own histories to tell and their own uses to make of environmental data culled from the destruction and contamination of their ancestral atolls, but they do not have easy access to the records. If historians take seriously the notion that environmental data can carry special resonances for some communities, then we should also think seriously about facilitating community access to archival materials.

Finally, environmental archives raise questions of representation. Some historians may choose to minimize or ignore the exploitative context of environmental science, erasing suffering communities entirely. Others, in contrast, may choose to tell stories of suffering without taking into account affected community members’ own views and voices. As an astute Marshallese op-ed writer remarked, some authors who cover the nuclear legacy have been little more than “traveling tragedy writers” building careers out of Islanders’ suffering.[8] What should be included in stories of extractive environmental research? Whose voices should be included? And how might historians work with communities to acknowledge suffering without exploiting or fetishizing it?

I wish to suggest that historians have ethical responsibilities toward the archival materials with which we work and the communities touched—even injured—by an archive’s creation and ongoing use. Historians are not neutral observers of the past. We are privileged memory-makers whose status and financial resources enable us to collect, curate, and narrate the stuff of history.[9] Quite often, as in my own case, we are white citizens from a colonizing nation-state. The thin line separating past injustices from the present-day historical enterprise cannot insulate historians from the political and ethical implications of our work. If we are not careful, our histories may magnify the assumptions and problems built into environmental archives, for example by valorizing expert knowledge and Western beliefs about the environment, and/or potentially reinjuring harmed communities. Although the histories we write may ultimately be critical ones, even exceptional critical historical analysis cannot remedy the gross power imbalances woven into the fabric of the archive—especially in imperial and postcolonial contexts.[10] We should consider, then, whether and how historians can share the privilege and the power we possess.

Those of us who work in and with environmental archives should reflect further on our fields’ practices and goals.[11] Historians who work on environmental justice have, in many cases, thought deeply about these issues in relation to their own projects. Many collaborate closely with oppressed or dispossessed communities implicated in their histories. Individual historians have taken steps such as seeking permission to work on sacred or sensitive topics, sharing their writing or having it translated, volunteering in local communities, making archival resources available, and donating book profits to community organizations. Archivists specializing in health information and Indigenous history have likewise often thought carefully about such questions. These critical conversations should be deepened and expanded.

The ethical conundrums of environmental archives touch work far beyond the fields of environmental justice and Indigenous studies. Many historians use environmental archival data built on suffering or dispossession. This is particularly true in settler colonial contexts. How much North American environmental science and exploration, for example, has relied on Indigenous lands or Indigenous knowledge? How much environmental knowledge has been predicated on environmental suffering and the proliferation of environmental injustice across communities of all kinds?

Historians working on environmental knowledge produced in the context of dispossession, inequality, and suffering might also consider the ethics of their practices and the archives they use. If every historian who has written about environmental experiments conducted in the Marshall Islands, for example, took the simple step of sharing English-language copies of their work with educational institutions in the islands, it would aid in Islanders’ initiatives to remember and seek justice for nuclear testing. If those same historians had abstracts of their work translated into Marshallese or, more ambitiously, worked to enable the sharing of archival records about experiments in the islands, the effects on education and memory-making, and even on Islanders’ contemporary environmental scientific studies in the Marshalls could be significant.[12] Such steps need not be limited to Indigenous communities affected by environmental harm. They could be extended anywhere that environmental knowledge has been built upon suffering or violence.

These are only opening questions for consideration and starting points for potential collaborations. In the Marshall Islands and beyond, discussions of the ethics of environmental archives should prioritize the viewpoints and desires of affected communities, even up to the point of communities’ exercises of refusal.[13] Historians, archivists, and social scientists working on health and on biological samples—especially within Indigenous communities—have often assumed as much.[14] It is time for historians working on environment to follow the path forged by scholars of environmental injustice and Indigenous studies to deepen searches for ethically sound practices and collaborations.

Developing collaborations and engaging with affected communities may be uncomfortable or even frustrating for historians accustomed to the cloistered work of the academy. Participating in such initiatives may sometimes lead to conflicts or disagreements. It may have financial—and especially professional—costs for historians in a field that too often prioritizes authorship of specialized monographs for small scholarly audiences. In such collaborations, a historian’s subjective experiences and goals should not be a primary concern: the community’s needs should take precedence. Discomfort and cost, moreover, need not be seen as indicators of failure. They are important signs of the ethical and political stakes of historical work.

At a time when scholars of the humanities are being called upon to justify our social relevance, academic institutions and senior historians should begin valuing deeper collaborations—with affected communities, with scientists, with policymakers, and beyond. In the meantime, as panel upon panel concluded in the searching discussions at the Critical Histories and Activist Futures conference, it is up to individual historians to follow their own moral compasses and to act as catalysts for change. Historians cannot alone undo the injustices of the past, or even of environmental archives. But we can and should do more.

 

Mary X. Mitchell is an Atkinson Postdoctoral Fellow in Sustainability at Cornell University, 2016-2018. In August of 2017, she joined Purdue University as an assistant professor of history. Her work focuses on the intersections of nuclear science and technology with law and social movements. She earned her Ph.D. in history and sociology of science from the University of Pennsylvania. Prior to beginning her doctorate, she earned a J.D., practiced law in Pennsylvania, and served as a law clerk to Judge Anthony J. Scirica of the United States Court of Appeals for the Third Circuit.

Critical Histories, Activist Futures” is a series edited by Tess Lanzarotta and Sarah M. Pickman.

 

Notes

[1] I am indebted to a number of government officials, mentors, and colleagues in the Marshall Islands who have generously discussed these issues with me and helped to shape my views over the past four years. They include: Her Excellency President Hilda Heine, Minister Tony De Brum, Minister Amenta Matthew, Nuclear Claims Tribunal Public Advocate Bill Graham, Iroij Mores Abraham, Mayor James Matayoshi, Rosania A. Bennett, Desmond Narain Doulatram, Lani Waltz Kramer, Mark Stege, Tina Stege, and Brooke Takala. I thank Tess Lanzarotta, Sarah Pickman, Linda M. Richards, and Elisabeth Roehrlich for extensive written comments on earlier drafts.

[2] See M.X. Mitchell, “Offshoring American Environmental Law: Land, Culture, and Marshall Islanders’ Struggles for Self-Determination During the 1970s,” Environmental History 22 (2017): 209-234.

[3] Quoted with permission.

[4] On biological archives see, for example, Jenny Reardon, Race to the Finish: Identity and Governance in an Age of Genomics (Princeton: Princeton University Press, 2004); Kim TallBear, Native American DNA: Tribal Belonging and the False Promise of Genetic Science (Minneapolis: University of Minnesota Press, 2013); Emma Kowal and Joanna Radin, “Indigenous Biospecimen Collections and the Cryopolitics of Frozen Life,” Journal of Sociology 51 (2015): 63-80; Joanna Radin, Life on Ice: A History of New Uses for Cold Blood (Chicago: University of Chicago Press, 2017).

[5] On this point, see, for example, Lorraine Daston, “Introduction: Third Nature”, in Science in the Archives: Pasts, Presents, Futures, ed. Lorraine Daston (Chicago: University of Chicago Press, 2017).

[6] I do not mean to suggest that paper records are the only or the best way to know about the past. Many cultures prioritize oral traditions and family records. Paper records, however, offer additional resources. In the Marshall Islands, they may provide other means of connecting with and understanding contaminated ancestral atolls under increasing threat from climate change.

[7] For a description of this project and access to the database, see http://data.nuclearsecrecy.com/mindd/?action=about.

[8] Editorial, Marshall Islands Journal, n.d., Box 5, Folder: 139, Jack Adair Tobin Papers, Unprocessed Collection, University of Hawai‘i at Mānoa Pacific Collections, Honolulu, HI. Scholars have critiqued the replacement of the other with the suffering subject. See, for example, Saidiya V. Hartman, Scenes of Subjection: Terror, Slavery, and Self-Making in Nineteenth Century America (New York: Oxford University Press, 1997); Audra Simpson, “On Ethnographic Refusal: Indigeneity, ‘Voice’, and Colonial Citizenship,” Junctures 9 (2007): 67-80; Eve Tuck, “Suspending Damage: A Letter to Communities,” Harvard Educational Review 79 (2009): 409-427; Joel Robbins, “Beyond the Suffering Subject: Toward an Anthropology of the Good,” Journal of the Royal Anthropological Institute 19 (2013): 447-462.

[9] On this point, see Michel-Rolph Trouillot, Silencing the Past: Power and the Production of History (Boston: Beacon Press, 1995).

[10] For discussion of the problems of so-called “moves to innocence”—acts by privileged persons that are intended to remove culpability for past injustices without actually ceding any power or privilege—see Eve Tuck and K. Wayne Yang, “Decolonization Is Not a Metaphor,” Decolonization: Indigeneity, Education & Society 1 (2012): 1-40.

[11] Some anthropologists working in the Marshall Islands have managed similar tensions in their own work by participating in advocacy on behalf of Islanders. Holly M. Barker and Barbara Rose Johnston’s Consequential Damages of Nuclear War: The Rongelap Report (New York: Routledge, 2008), for example, arose in part out of expert research prepared for a legal damages claim. See also Kim Fortun, Advocacy After Bhopal: Environmentalism, Disaster, New Global Orders (Chicago: University of Chicago Press, 2001). I am not suggesting that historians should invariably take roles as expert advocates. As historians’ involvements in lawsuits about big tobacco have shown, historians’ participation in legal advocacy may raise other ethical conundrums and controversies. See, for example, Robert N. Proctor, “‘Everyone Knew but No One Had Proof’: Tobacco Industry Use of Medical History Expertise in US Courts, 1990-2002,” Tobacco Control 15 (2006), 117-125 (expressing one historian expert witness’s view).

[12] With luck, a translated version of this article will soon be published in Marshallese. Unfortunately, the sharing of archival materials is often hindered by archives’ own restrictions on dissemination. In the case of the Marshall Islands U.S. federal laws governing the export of technical data may create additional complications.

[13] On the importance and politics of refusal see Simpson, “On Ethnographic Refusal”; Eve Tuck and K. Wayne Yang, “R-Words: Refusing Research,” in Humanizing Research: Decolonizing Qualitative Inquiry with Youth and Communities, eds. Django Paris and Maisha T. Winn (Los Angeles: Sage, 2013), 223-248.

[14] Indigenous scholars have led the way in analyzing practices of mentorship and collaboration. For discussion of collaboration, see Kim TallBear, “Standing With and Speaking as Faith: A Feminist-Indigenous Approach to Inquiry, Journal of Research Studies 10 (2014), available at http://jrp.icaap.org/index.php/jrp/article/view/405/371. For a seminal volume about research and Indigenous communities and, especially, research conducted by Indigenous researchers, see Linda Tuhiwai Smith, Decolonizing Methodologies: Research and Indigenous Peoples (New York: Zed Books, 1999). For an analysis of white anti-racists’ attempts to help Indigenous communities in Australia, see Emma Kowal, Trapped in the Gap: Doing Good in Indigenous Australia (New York: Berghahn, 2015).

 

Toxicity, Waste, Detritus: An Introduction by Pamila Gupta

10 Octobre 2017 - 5:37pm

Planet Earth has entered the time of the Anthropocene. For natural scientists, this means that human activity, taken as a whole, has come to rival geological and biophysical forces in its effect on the planet. Disturbing material comparisons communicate the deep weirdness of this fact. For example, there’s now enough concrete on the planet to produce a 2mm thick, full-scale replica of Earth, and enough plastic to completely wrap that replica in cling film. In the time of the Anthropocene, humans are turning the planet inside out, redistributing matter, putting molecules out of place.

The responsibility and benefits of wasting the planet – and toxifying the bodies that reside on it – are wildly, but unsurprisingly, uneven. Charts and maps readily capture such inequalities. You can critique the UN’s Human Development Index on many fronts, but it comes in awfully handy for visualizing aggregate differences between ecological footprint and economic prosperity:

 

Visualizing inequality in the Anthropocene. Source: World Wildlife Fund 2006, via work by Daniel D. Moran, Norwegian University of Science and Technology.

Some creative mapmakers have found even more striking ways of presenting these inequalities:

Equivalent area map of night lights, major roads, railways, power lines, pipelines, overseas cables, airlines, shipping lanes. Source: http://www.viewsoftheworld.net/wp-content/uploads/2012/03/AnthropoceneMapping.jpg

As both of these visualizations make abundantly clear — with a lower HDI cluster of mustard dots representing Africa in one, and the lush expanse of green Africa standing out in the other — the African continent registers a lower ecological footprint than many other parts of the world, while displaying significantly higher levels of inequality. South Africa – often called the most unequal society in the world – pops out of these images for its intense industrial development. Does this contrast imply that South Africa is a particularly toxic place? Beyond the striking yet predictable pictures presented by such visualizations, how might we understand the toxification of our planet more generally if we start in Africa? How can African places offer purchase on the nexus of waste, toxicity, and violence that currently drive global change? What genealogies of toxicity, waste, and detritus emerge by tracing horizontal circuits across the Global South, or within Africa itself? How does dwelling in the cleavages and interstitial spaces that emerge in such circuits open up new toxic forms, relations, and vocabularies?

Such questions formed the starting point for the papers in this collection, which arises from a sustained collaboration between scholars at the University of the Witwatersrand and the University of Michigan. Generously funded by the Mellon Foundation, the broader collaborative project aims to explore the dynamics between theory and empiricism in the African humanities. Within this framework, a subgroup of scholars in history, anthropology, literary studies, and media studies at both institutions pursued the theme of toxicity, waste, and detritus in the Global South. Along the way, we were joined by a handful of scholars from other universities. This collection emerges from a series of workshops and conversations conducted over a two-year period.

The ontological indeterminacy of the waste/value dialectic formed a starting point for our conversations. As social theorists have long observed, materials can be waste in one context, and commodities, resources, or art in another. Changes in value are never clear, unidirectional, or fixed in time and space. We examined the political geography of this indeterminacy in African and other “Global South” contexts. We saw toxic waste not only as a mirror of social, political, and economic conditions, but also as an active agent shaping those conditions. A focus on toxicity and detritus led us to the “slow violence” of fast capitalism, exploring the perpetual state of living in ruins and amidst rubble (industrial and otherwise). Residues, topographies, and littorals offered points of entry and exit.

How, we wondered, could we better locate the global in the African local? How could we think beyond repair in and from Africa? Some authors rotate the compass, so that African things and places come to reflect or refract American and European processes. Africa offers new starting points: sites of beauty to learn from, as well as places where poop ends up, ports are left to dwindle, mercury levels rise, and lakes become ever more polluted. Other authors introduce vocabularies for thinking about global change (geological and otherwise), tracing Anthropocenic shifts in the ground beneath our feet. Patented technologies, industrial mining, and fantastical architectural designs create disturbing ways of living and being. Their discourses and geographies cannot be easily contained or demarcated.

The collection begins with a set of meditations on each of our organizing keywords: toxicity, waste, and detritus. From there, essays on “forms” and “flows” will appear weekly. We end with two closing meditations on “futures,” in the hope that readers will experience the collection as a set of invitations to further conversation.

If you accompany us on this journey, you will find yourself gazing upwards to the sky or peering down below the surface of our deep oceans. Perhaps you will share our consternation at high-rise urbanscapes, rotting fish carcasses, human-built islands, garbage patches lost at sea, at the drift, dust, and dumps that envelop us. We hope to show you how materialities of waste signal the quickened media in which they take form and travel, how everyday circuits of inclusion and exclusion are brought into question. We invite you into the toxic sensorium, addressing the sights, sounds, smells, and taste of toxicity, registering “empathies of waste” and “critical detritus.” Meditations become mediations. Forms and flows bring forth fluids and fluidity, morphing into uncertain futures, racialized bodies, and bleached beaches.

 

Pamila Gupta is Associate Professor at WISER (Wits Institute for Social and Economic Research) at the University of Witwatersrand in Johannesburg, South Africa. She holds a PhD in Socio-cultural Anthropology from Columbia University. Her research explores Lusophone (post)colonial links and legacies in India and Africa. She has published in Interventions, the South African Historical Journal, African Studies, Critical Arts, the Journal of Asian and African Studies, Ler História, Ecologie & Politique, and Public Culture, and is the co-editor of Eyes Across the Water: Navigating the Indian Ocean with Isabel Hofmeyr and Michael Pearson (UNISA, 2010). Her monograph entitled The Relic State: St. Francis Xavier and the Politics of Ritual in Portuguese India was published in 2014 by Manchester University Press. Her newest collection of essays entitled Ethnographies of Lusophone Decolonization in India and Southern Africa is forthcoming with Bloomsbury Press.

Gabrielle Hecht is Frank Stanton Foundation Professor of Nuclear Security at Stanford University, where she is affiliated with the Center for International Security and Cooperation (CISAC) and the Department of History.  Before returning to Stanford in 2017, Hecht taught at the University of Michigan for 18 years, where she helped to launch UM’s collaborative project with the Wits Institute for Social and Economic Research (South Africa) on Joining Theory and Empiricism in the remaking of the African Humanities. Hecht has written two award-winning books about nuclear things: Being Nuclear: Africans and the Global Uranium Trade (2012) and The Radiance of France: Nuclear Power and National Identity (1998 & 2009). She is currently beginning a book on technology and power in Africa (under contract with Cambridge University Press), as well as a series of essays on radioactive and other forms of waste, tentatively titled Toxic Tales from the African Anthropocene.

In The Journals – September 2017, part I by Christine Sargent

6 Octobre 2017 - 5:00am

Hi everyone! September was full of publications, so we’ll take last month in two parts.

American Anthropologist

“The Campesino Was Born for the Campo”: A Multispecies Approach to Territorial Peace in Colombia

Angela J. Lederach

I draw on ethnographic fieldwork with a social movement, the Peaceful Process of Reconciliation and Integration of the Alta Montaña, to explore practices of peacebuilding in rural Colombia. I use a multispecies lens to interrogate the discourse of territorial peace (paz territorial), revealing the ways in which both violence and peace intertwine human and nonhuman lives and relations in the Alta Montaña. Through analysis of the everyday assemblages forged between people, animals, forests, and crops, I demonstrate how the multispecies approach to peacebuilding found in the Alta Montaña sharpens our understanding of the mutually reinforcing processes of violent conflict and environmental degradation. As a result, I argue that multispecies anthropological analysis also enables a capacious conceptualization of peace, one that recognizes the full life-worlds of people as they seek, in their everyday lives, to reweave—and create anew—the social and ecological fabric of their communities. [violence, displacement, multispecies, peacebuilding, Colombia]

Acculturation and Health: The Moderating Role of Sociocultural Context

Molly Fox, Zaneta M. Thayer, Pathik D. Wadhwa

Acculturation represents an important construct for elucidating the determinants and consequences of health disparities in minority populations. However, the processes and mechanisms underlying acculturation’s effects on health are largely undetermined and warrant further study. We integrate concepts from anthropology and statistics to describe the role of sociocultural context as a putative modifier of the relationship between acculturation and health. Sociocultural context may influence the extent to which exposure to host culture leads to internalization of host cultural orientation and may influence the extent to which acculturation leads to stress and adoption of unhealthy behaviors. We focus on specific aspects of sociocultural context: (1) neighborhood ethno-cultural composition; (2) discrimination; (3) discrepancy between origin and host environments; (4) discrepancy between heritage and host cultures; (5) origin group, host group, and individual attitudes toward assimilation; (6) variation in targets of assimilation within host community; (7) public policy and resources; and (8) migration selection bias. We review and synthesize evidence for these moderation effects among first- and later-generation immigrants, refugees, and indigenous populations. Furthermore, we propose best-practices data-collection and statistical-analysis methods for this purpose, in order to improve our understanding of the complex, multilevel aspects of the relationship between acculturation and health. [acculturation, minority health, health disparities, sociocultural context, effect moderation, statistical interaction]

Natural Graffiti and Cultural Plants: Memory, Race, and Contemporary Archaeology in Yosemite and Detroit

John M. Chenoweth

This article argues that some elements of material culture can creatively cross the line between notions of “nature” and “culture” as these and related ideas are often tacitly understood by some modern people. This has implications for the biosphere, but the division of these categories is also tied up with the division of people, processes of identification, memorialization, and the way some people are defined out of the human realm altogether. Modern material culture—objects used, left, manipulated, and removed by people—seems particularly adept at telling us about these categories in the minds of some modern people. An archaeology of the contemporary examines how people interact with different kinds of “natural” things in places where nature and culture, in the modern imaginary, meet and conflict. In the starkly different contexts of the city of Detroit and Yosemite National Park, such objects have been managed and manipulated in a way that speaks to crucial issues of memory, identity, and race. [contemporary archaeology, nature and culture, memory, national parks, Detroit]

Uniquely Human: Cultural Norms and Private Acts of Mercy in the War Zone

Bilinda Straight

War-zone mercy—sparing of one’s culturally constructed enemies in the midst of organized group violence—is a political act but also a potentially empathically motivated one that has contributed to shared expressive gestures across cultural boundaries and to international laws of war. This article elucidates historical and cross-cultural norms for war-zone mercy in order to provide a theoretical framework for scholarly research examining this behavior and offers a case study with systematically collected data about war-zone mercy during Kenyan pastoralist Samburu experiences of coalitional lethal violence (low-intensity chronic warfare). As a whole, this article presents evidence from human and nonhuman animal studies that war-zone mercy is a uniquely human form of empathy-produced altruism. Humans may be trained or culturally conditioned to kill, and yet widely available historical and cross-cultural examples of war-zone mercy underscore the ways in which prosocial emotions like empathy reveal and pervade the human. [war, agency, prosocial emotion, altruism, Kenya]

BioSocieties

White opioids: Pharmaceutical race and the war on drugs that wasn’t

Julie Netherland, Helena Hansen

The US ‘War on Drugs’ has had a profound role in reinforcing racial hierarchies. Although Black Americans are no more likely than Whites to use illicit drugs, they are 6–10 times more likely to be incarcerated for drug offenses. Meanwhile, a very different system for responding to the drug use of Whites has emerged. This article uses the recent history of White opioids – the synthetic opiates such as OxyContin® that gained notoriety starting in the 1990s in connection with epidemic prescription medication abuse among White, suburban and rural Americans and Suboxone® that came on the market as an addiction treatment in the 2000s – to show how American drug policy is racialized, using the lesser known lens of decriminalized White drugs. Examining four ‘technologies of whiteness’ (neuroscience, pharmaceutical technology, legislative innovation and marketing), we trace a separate system for categorizing and disciplining drug use among Whites. This less examined ‘White drug war’ has carved out a less punitive, clinical realm for Whites where their drug use is decriminalized, treated primarily as a biomedical disease, and where their whiteness is preserved, leaving intact more punitive systems that govern the drug use of people of color.

Patient-centred medicine and the broad clinical gaze: Measuring outcomes in paediatric deep brain stimulation

John Gardner

Policymakers have argued that patient-centred approaches, which emphasise ‘greater patient involvement’ and ‘comprehensive care’, can improve health-care outcomes and lead to a more efficient use of health resources. As a way of anticipating some of the implications of these approaches, this article examines a context that is heavily influenced by the ideals of patient-centred medicine. Drawing on ethnographic research conducted with a multidisciplinary team providing deep brain stimulation to children with movement disorders, this article will illustrate that patient-centred principles can become embedded within particular sociotechnical arrangements involving architectural forms, assessment tools and clinical team structures. These arrangements, it is argued, are implicated in the emergence of a broad clinical gaze: a clinical interest that extends from the shapes and structures of the body, to the subjective thoughts and emotional state of the patient, to elements of the patient’s social context and their ability to act within it. The implications of this gaze will be discussed, and this article will suggest that it constitutes a form of disciplinary power that seeks to reaffirm and perpetuate particular ways of being human.

Spliced: Boundary-work and the establishment of human gene therapy

Courtney Addison

Human gene therapy (HGT) aims to cure disease by inserting or editing the DNA of patients with genetic conditions. Since foundational genetic techniques came into use in the 1970s, the field has developed to the point that now three therapies have market approval, and over 1800 clinical trials have been initiated. In this article I present a brief history of HGT, showing how the ethical and practical viability of the field was achieved by key scientific and regulatory actors. These parties carefully articulated gene therapy’s scope, limiting it to therapeuticinterventions on somatic cells, and cultivated alliances and divisions that bolstered the field’s legitimacy. At times these measures faltered, and then practitioners and sometimes patients would invoke an ethical imperative, posing gene therapy as the best solution to life and death problems. I suggest that we consider how boundary-work stretches out from science to enlist diverse publics, social formations and the natural world in the pursuit of legitimacy.

From the pergonal project to Kadimastem: A genealogy of Israel’s reproductive-industrial complex

Sigrid Vertommen

In the Israeli ‘start-up nation’ biotechnology has emerged as one of the most thriving knowledge-intensive industries. Particularly the med-tech and repro-tech sector are widely regarded as world class in their ability to develop experimental therapies and medicines based on topnotch ‘pioneering’ biomedical research. These developments have rightly been attributed to the neoliberal turn of the late seventies when Israel started to position itself as significant player in the global health and research market. By exploring the (dis)continuities between Pergonal, a fertility drug developed in the late 1950s by the Israeli scientist Bruno Lunenfeld and the Swiss-Italian pharmaceutical company Serono, and the experimental stem cell therapies that are currently being developed by the Israeli biotech company Kadimastem, this article argues, however, that a much older, but still ongoing history of Zionist settler colonial warfare in Palestine/Israel also lies behind the emergence of Israel’s flourishing reproductive-embryonic industry. A Zionist demographic logic that aims to consolidate a Jewish majority in a Jewish state has created fertile conditions for the emergence of a reproductive-industrial complex in which the interests of a pronatalist Jewish state and a biomedical establishment – consisting of academic entrepreneurs, venture capitalists, biotech companies and pharmaceutical giants – have coalesced. The bodies of Israeli women play a pivotal role in this process, not only as reproducers of the settler nation but also as providers of the raw biological materials that are needed to produce experimental research results and to generate surplus bio-value.

Pathways and prospects in cancer research: Securing futures and negotiating boundaries

Alexandra Hillman, Jamie Lewis, Glyn Elwyn

This paper draws on literature from the sociology of expectations to explore accounts of experts in cancer research and clinical practice. The cancer specialists’ accounts presented in this article are taken from interviews undertaken as part of a project that aimed to develop a research agenda for the next ten to thirty years that will achieve early detection and prevention in the four main cancers: (i) bowel and colorectal, (ii) prostate, (iii) lung and (iv) breast. Drawing on secondary analysis of the interviews, this article provides a sociological exploration of both the experts’ versions of the future and the interactions between the interviewer and research participant to show expectation in the making: the competing stories of what is and what ought to be the focus of cancer research now and in the (near) future. The building of a cancer research agenda is shown to be a contested future, represented by a dominant and resistant view of the cancer problem, in which cancer specialists must engage in performative strategies and boundary work to frame the present problem: what cancer is and how it can be detected and, subsequently, to claim credibility for a future pathway

(Re)configuring research value: international commercial clinical trials in the Russian Federation

Olga Zvonareva, Nora Engel, Natalia Kutishenko, Klasien Horstman

Clinical trials of new drugs are generally understood in terms of contribution to the future well-being of patients and society at large, while studies of the political economy of trials reveal that global health inequalities have come to sustain the continuous and lucrative operation of this enterprise. The divide between profit generation and improvements in local well-being could be especially vivid when international commercial clinical trials are conducted in new, non-traditional locations outside of North America and Western Europe. This article focuses on how this divide is managed in the everyday work of conducting trials in a research centre in Russia. It explores how investigators and research participants engage in the work of translating trials into academic capacity-building, development of local medical expertise and provision of public health benefits. That is, research value is being multiply configured in clinical, scientific and economic domains. We view the conduct of clinical trials as a boundary process which, through enabling multiplication of value, bridges the realms of health and wealth. This reading of the process of conducting trials opens up opportunities to think about ways to maximise the value of medical experimentation and to (re)link clinical research and public good.

Narrating uncertainty: Variants of uncertain significance (VUS) in clinical exome sequencing

Stefan Timmermans, Caroline Tietbohl, Eleni Skaperdas

Exome sequencing is an innovative next-generation sequencing technology that examines the majority of disease-causing genes with a single test. Physicians and patients resort to exome sequencing to probe for a genetic cause of disease. The technology produces about 20,000 variants and many are of uncertain clinical relevance. Drawing from ethnographic field notes and audio recordings of over 1,500 patient cases discussed at genetic data board meetings over a three-year period, this article reports on how a collective of laboratory scientists and clinicians contend practically and conceptually with variants of uncertain significance (VUS). Rather than standardizing the inclusion criteria for a VUS, the collective contextualizes each VUS with its own evidentiary narrative. The VUS then becomes subject to revision based on evolving evidence, further testing, and updated interpretations. We argue that the epistemic uncertainty of VUS becomes productive; it indicates future causality and suggests that genetic causes can explain patients’ symptoms even if no known pathogenic variants could be located.

Body & Society

Special Issue: Indeterminate Bodies

Indeterminate Bodies: Introduction

Claire Waterton and Kathryn Yusoff

Indeterminate Bodies organizes a number of theoretical and empirical studies around the concept and actuality of indeterminacy, as it relates to body and society. Located within the struggle to apprehend different categories of ‘body’ in the volatile flows of late-capital, indeterminacy is considered through such multiple incarnations as economy, contingency, inheritance, question, force, uncertainty, materiality and affective resistance to determination. While indeterminacy is often positioned as the ‘trouble’ or friction in subject/object knowledge-formation (framed as ontological or empirical challenge), it also engenders affects such that some subjects are both in and out of recognition. Questions of indeterminacy overlap with work on imperceptibility, giving rise to interlocked questions about the modes of representation, categorization, inclusion, exclusion and sensibility in the production of bodies. We address the hesitancies, difficulties and necessities of working with and through indeterminacy in order open up new descriptions, visions and modes of political work.

Plastic Naturecultures: Multispecies Ethnography and the Dangers of Separating Living from Nonliving Bodies

Kim De Wolff

A jellyfish surrounds a plastic fragment, merging the synthetic material with its body; a water agency poster warns of dangerous plastic bottle ‘fish’ in the Mediterranean; marine organisms take shelter on and under synthetic materials. These are the denizens of a growing realm marine ecologists call the ‘plastisphere’, where sea life and plastics meet. Building upon multispecies ethnography, science and technology studies interrogations of nature/culture divides and the practical work of classification, this article explores the indeterminacy – the very plasticity – of the category of ‘species’ as it is engaged in seriousness and irony, with living and nonliving bodies. First, I draw on participant observation at a nonprofit marine institute laboratory in California to trace the travels of plastic-creatures through attempts to disentangle them in the pursuit of scientific knowledge. Here volunteers sort tiny plastic bits from animal ones under the microscope, enacting material boundaries as they decide what gets counted as life (not plastic) and what does not (plastic). Second, I follow movements of plastic-creatures through public education campaigns, paying particular attention to assumptions about belonging and agency enacted with assumptions about whether and when plastic-species should or should not meet. I argue that the ‘danger’ of plastic relationships lurks not in associations but in the very categories used to know and live with forms of plastic and forms of life, in the kinds of belonging that emerge with kinds of materials, and in the failure to recognize the impossibility of their separation.

Microbial Suicide: Towards a Less Anthropocentric Ontology of Life and Death

Astrid Schrader

While unicellular microbes such as phytoplankton (marine algae) have long been considered immortal unless eaten by predators, recent research suggests that under specific conditions entire populations of phytoplankton actively kill themselves; their assumed atemporality is being revised as marine ecologists recognize phytoplankton’s important role in the global carbon cycle. Drawing on empirical research into programmed cell death in marine microbes, this article explores how, in their study of microbial death, scientists change not only our understanding of microbial temporality, but also reconstruct the relationship between life and death, biological individuality and assumptions about a natural teleology associated with bounded biological systems and genetic programmes. Reading this research together with a Derridean deconstruction of the limit between human and other animals with respect to death, this article explores how the deconstruction of individuality from within biology may suggest alternatives to our anthropocentric notion of time and embodiment.

Indeterminate Subjects, Irreducible Worlds: Two Economies of Indeterminacy

Kathryn Yusoff

Lodged in an impasse between questions of environmental justice and modes of capitalisation in the green economy, indeterminacy is a vulnerable and porous relation. Pollution activates a potentiality in the organism to be otherwise, to generate certain kinds of tumours, mini-deaths or mutations. Toxicity has an intermediary status that launches a mobility of effects that is often fragmented through sense organs, affirming forms of non-identity in biopolitical relations. Organisms are receptive to such bodily reconfigurations precisely because they are open to the material communication of the world. In contrast to the “hidden labour” of indeterminacy in capitalist modes of capture, this article crafts an analytics of indeterminacy as an interjection in the politics of environments. Through dispersants in the Gulf of Mexico and military bees, two economies of indeterminacy are discussed. Drawing on Georges Bataille’s notion of political economy, I argue that what is required is an economy of radical inequivalence; an excessive engagement with the possibilities of indetermining forces to make fleeting marks.

Indeterminacy and More-than-human Bodies: Sites of Experiment for Doing Politics Differently

Claire Waterton

This article analyses research that has explored the potential of a focus on indeterminate bodies for decision making, policy and politics. Drawing on different ways of conceptualising indeterminacy in scientific and policy domains it describes the Loweswater Care Project, a participatory ‘knowledge collective’ that attempted to avoid converting the complexities of vital cyanobacterial bodies into a purely social or managerial set of questions around water quality. Through a commitment to opening out the nature of ‘things’, participants in this collective honed new questions and avenues of inquiry around cyanobacteria and its relations. The Loweswater Care Project was a kind of ‘open’ in Haraway’s sense, where questions and demands are put to bodies, and to the apparatus that allows us to sense them, in ways that do not shy away from the probabilistic character of entities and their relations. The implications of generating indeterminacies in this setting are explored for environmental decision making, policy and politics.

Adopting Neuroscience: Parenting and Affective Indeterminacy

Adrian Mackenzie, Celia Roberts

What happens when neuroscientific knowledges move from laboratories and clinics into therapeutic settings concerned with the care of children? ‘Brain-based parenting’ is a set of discourses and practices emerging at the confluence of attachment theory, neuroscience, psychotherapy and social work. The neuroscientific knowledges involved understand affective states such as fear, anger and intimacy as dynamic patterns of coordination between brain localities, as well as flows of biochemical signals via hormones such as cortisol. Drawing on our own attempts to adopt brain-based parenting, and engaging with various strands and critiques of new materialism and affect theory, we explore the ways in which the social sciences and humanities might fruitfully engage with neuroscientific concepts and affects. How does science-affected indeterminacy, with all its promises of ontological and experiential agency, help us to observe, wait, bind or hold together volatile mixtures of habit, speech and action?

Critical Public Health

An exploration of how health care professionals understand experiences of deafness

Danielle Ferndale, Bernadette Watson & Louise Munro

Findings from recent deaf education intervention programmes with health care professionals emphasise the importance of sociocultural dimensions of medicine, pointing to the need to further investigate health professionals’ current understandings of deafness. Situated within a social constructionist and critical realist framework, we investigated health professionals’ understandings of deafness and experiences of providing health services in Australia to d/Deaf people. Through an inductive thematic analysis of 18 individual interviews with medical or allied health professionals, we identified an overarching theme we labelled hearingness as privileged, whereby professionals accounted for the quality of the health services available to d/Deaf people in Australia. The professionals recognised the services as not good enough and, through relating their efforts to do the best they can, and describing how the situation could always be better, it was evident that the professionals were negotiating a larger health system that disadvantages the needs of d/Deaf people for the needs of people with hearingness. We discuss the implications of working within a system that privileges hearingness.

Culture, Medicine, and Psychiatry

Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates

Lesley Jo Weaver, Sarah Trainer

Stigma is a powerful determinant of physical and mental health around the world, a perennial public health concern that is particularly resistant to change. This article builds from sociologist Erving Goffman’s classic conception of stigma as a unitary social phenomenon to explore the stigma attached to two seemingly dissimilar conditions: food insecurity in rural Brazil, and obesity in the urban United Arab Emirates. Our analyses underscore that both conditions are stigmatized because they represent a departure from a deeply-held social norm, and in both cases, self-stigma plays an important role. Furthermore, in both cases, the stigma associated with food insecurity and obesity is likely at least as harmful to personal wellbeing as are the biological consequences of these conditions. Finally, evidence increasingly links obesity and food insecurity causally. Our analyses suggest that these forms of stigma transcend individuals and are largely structural in their origins, and therefore that they are most likely to be improved through structural change.

Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum

Mihan Lee

Infertility affects women across the socioeconomic spectrum; however, it is by no means egalitarian in its distribution, nor uniform in its lived experience. Evidence shows striking disparities by income, race, and education in infertility prevalence, access to infertility services, and success rates after receiving infertility treatments. However, few studies so far have investigated disparities in patients’ access to psychological support during the infertility journey. This paper undertakes a cyber-ethnography of the online patient forum, “Finding a Resolution for Infertility,” hosted by RESOLVE: The National Infertility Association. It also draws from interviews with 54 infertility patients recruited from the forum. Our aim was to examine how social support operates within this virtual realm, by examining how the forum’s language, norms, and values create and enforce categories of deserving and belonging among site users. We find that the forum’s discourse privileges an infertility narrative we term the “persistent patient,” in which a patient exhaustively researches treatment options, undergoes multiple cycles of treatment despite repeated failures, and ultimately achieves success (a healthy baby). Meanwhile, there is little to no discursive space for discussion of the financial and social resources necessary to act in accordance with this script. Thus, women without such resources can be alienated, silenced, and denied mental health support by this online community.

Actively Negotiating the Mind–Body Divide: How Clozapine-Treated Schizophrenia Patients Make Health for Themselves

Julia E. H. Brown, Simone Dennis

It is well recognised that antipsychotic treatments impact the whole body, not just the target area of the brain. For people with refractory schizophrenia on clozapine, the gold standard antipsychotic treatment in England and Australia, the separation of mental and physical regimes of health is particularly pronounced, resulting in multiple, compartmentalised treatment registers. Clinicians often focus on the mental health aspects of clozapine use, using physical indicators to determine whether treatment can continue. Our observations of 59 participants in England and Australia over 18 months revealed that patients did not observe this hierarchisation of mental treatments and physical outcomes. Patients often actively engaged in the management of their bodily symptoms, leading us to advance the figure of the active, rather than passive, patient. In our paper, we do not take the position that the facility for active management is a special one utilised only by these patients. We seek instead to draw attention to what is currently overlooked as an ordinary capacity to enact some sort of control over life, even under ostensibly confined and confining circumstances. We argue that clozapine-treated schizophrenia patients utilise the clinical dichotomy between mental and physical domains of health to rework what health means to them. This permits patients to actively manage their own phenomenological ‘life projects’ (Rapport, I am Dynamite: an Alternative Anthropology of Power, Routledge, London 2003), and forces us to reconsider the notion of clinical giveness of what health means. This making of one’s own meanings of health may be critical to the maintenance of a sense of self.

Mental Ill Health, Recovery and the Family Assemblage

Rhys Price-Robertson, Lenore Manderson, Cameron Duff

The recovery approach is now among the most influential paradigms shaping mental health policy and practice across the English-speaking world. While recovery is normally presented as a deeply personal process, critics have challenged the individualism underpinning this view. A growing literature on “family recovery” explores the ways in which people, especially parents with mental ill health, can find it impossible to separate their own recovery experiences from the processes of family life. While sympathetic to this literature, we argue that it remains limited by its anthropocentricity, and therefore struggles to account for the varied human and nonhuman entities and forces involved in the creation and maintenance of family life. The current analysis is based on an ethnographic study conducted in Australia, which focused on families in which the father experiences mental ill health. We employ the emerging concept of the “family assemblage” to explore how the material, social, discursive and affective components of family life enabled and impeded these fathers’ recovery trajectories. Viewing families as heterogeneous assemblages allows for novel insights into some of the most basic aspects of recovery, challenging existing conceptions of the roles and significance of emotion, identity and agency in the family recovery process.

Intersecting Cultures in Deaf Mental Health: An Ethnographic Study of NHS Professionals Diagnosing Autism in D/deaf Children

Natassia F. Brenman, Anja Hiddinga, Barry Wright

Autism assessments for children who are deaf are particularly complex for a number of reasons, including overlapping cultural and clinical factors. We capture this in an ethnographic study of National Health Service child and adolescent mental health services in the United Kingdom, drawing on theoretical perspectives from transcultural psychiatry, which help to understand these services as a cultural system. Our objective was to analyse how mental health services interact with Deaf culture, as a source of cultural-linguistic identity. We ground the study in the practices and perceptions of 16 professionals, who have conducted autism assessments for deaf children aged 0–18. We adopt a framework of intersectionality to capture the multiple, mutually enforcing factors involved in this diagnostic process. We observed that professionals working in specialist Deaf services, or with experience working with the Deaf community, had intersectional understandings of assessments: the ways in which cultural, linguistic, sensory, and social factors work together to produce diagnoses. Working with a diagnostic system that focuses heavily on ‘norms’ based on populations from a hearing culture was a key source of frustration for professionals. We conclude that recognising the intersectionality of mental health and Deaf culture helps professionals provide sensitive diagnoses that acknowledge the multiplicity of D/deaf experiences.

Contemporary Drug Problems 

Assembling the Social and Political Dimensions of Take-Home Naloxone

Adrian Farrugia, Suzanne Fraser, Robyn Dwyer

This commentary explores the complex position that take-home naloxone holds as a harm reduction strategy in contemporary public health contexts. Providing the opioid antagonist naloxone to people who consume opioids and others likely to witness opioid overdose is currently positioned as an exemplary lifesaving public health intervention. Few socially oriented studies of take-home naloxone raise questions beyond whether or not take-home naloxone “works”—lines of inquiry that we think should be raised. Until take-home naloxone efforts address harms as effects of social context and policy regimes, the focus on individual behavior change will constrain the equitable distribution of responsibility for tackling overdose and the capacity to achieve more ambitious harm reduction goals such as decriminalization and the associated destigmatization of those who consume opioids. We conclude by arguing for the analytic incorporation of issues of power and normalization that animate responses to opioid overdose, including take-home naloxone.

Becoming a Medical Marijuana UserReflections on Becker’s Trilogy—Learning Techniques, Experiencing Effects, and Perceiving Those Effects as Enjoyable

Nicholas Athey, Neil Boyd, Elysha Cohen

Howard Becker’s analysis of marijuana use has had long-standing impacts upon our collective understanding of how individuals become drug users. This paper ultimately asks whether the framework described by Becker is unique to recreational marijuana use or, rather, a process that is not fundamentally different from that employed with the consumption of any psychoactive drug, whether taken for medical and/or recreational purposes. We used detailed semistructured interviews with Canadians (n = 22) who self-identify as medical marijuana users. Respondents were asked a series of questions about their reasons for use, medical conditions and symptoms, current and past consumption habits, how they learned about medical marijuana, and the substance of that learning process. The analytic approach is informed by Becker’s conceptual framework and peer-reviewed and publicly available information sources. Although the principal reasons for self-described medical use—relief from pain, anxiety, and insomnia—are consistent across respondents, the way in which they come to define their use as medical is heterogeneous. Sources of information and the substance of such information are more complex and detailed than that described by Becker, suggesting a more intricate learning process when the motivation for use is therapeutic. Drawing upon detailed interviews with self-described medical users, we argue that the line drawn between recreational marijuana use and medically driven use is blurred: Most self-described users are seeking both relief from pain and the pursuit of recreation in their use of the drug, a finding that has implications for the logic of a clear separation in law and policy between these two motivations for consumption.

 East Asian Science, Technology and Society (open access)

Bionetworking and Strategic Linking between India and Japan: How Clinical Stem Cell Intervention Continues despite New Regulatory Guidelines

Prasanna Kumar Patra, Margaret Sleeboom-Faulkner

Based on a case study of a clinical stem cell intervention (CSCI) center in Chennai, India, this article explores distinct entrepreneurial strategies for the promotion of unrecognized clinical stem cell applications in India. It shows that the center—an Indo-Japanese joint-venture—is able to promote the CSCI due to its central position in a network relationship, its possession of specialized skills and knowledge, and its ability to maneuver other actors in the network and to identify and utilize their latent value. We examine the developmental history of the making and remaking of regulation and the shift in the way clinical stem cell application providers function—from institutional embedment to strategic linking through collaborative networks. We ask why and how unauthorized clinical applications are sustained and promoted in India. We conclude that this is possible as a result of a number of factors: jurisdictional ambiguity, institutional inability, issues concerning the legal enforceability of the relevant guidelines, the complexity of the collaborative network structure that facilitates the circumvention of the regulation, and the nonfunctioning of apex-level committees.

Forum: on Evelyn Fox Keller’s, “Globalization, Scientific Lexicons, and the Future of Biology

With contributions by:

Daiwie Fu – An Introduction to the Forum and Its Origins

Francesca Bray – Science, Language, and the Purity of Bottled Water

Ruey-Lin Chen – A Linguistic or an Ontological Problem? Some Comments

Tomoko Ishida – Gene: From Demarcation to Dynamic Meanings

Dayk Jang – What Can Cultural Psychology Give to Twenty-First-Century Biology?

Karine Chemla – What Can Be Derived from Evelyn Fox Keller’s Article about Scientific Cultures? Some Thoughts about Language and Scientific Activity

Evelyn Fox Keller – Response to Comments on “Globalization, Scientific Lexicons, and the Future of Biology”

Ethos

Care and Relatedness among Rural Mapuche Women: Issues of Cariño and Empathy

Marjorie Murray, Sofía Bowen, Marisol Verdugo, Jona Holtmannspötter

Based on ethnographic fieldwork in the Araucanía region of Chile, this article analyzes the caring practices of rural Mapuche women through relatedness, investigating how the study of mutual care illuminates the acknowledgment of sociality and personhood. Recounting concrete daily practices of mutual care—ayuda (help), estar atenta(being aware), and estar ahí (being there)—we examine the enactment and narratives of what these women label cariño, or affection. We argue that these women’s caring practices and sense of cariño are coherent with the acknowledged volitional and autonomic features of Mapuche personhood. We also claim that paying specific attention to cariño provides novel insight for an understanding of rural Mapuche women’s personhood. Cariño stands for what is considered empathy in different societies, in which feelings and actions related to empathy and empathy-like phenomena are indistinguishable. We hope to contribute to the study of mutual care in everyday life. [care, women, Mapuche, autonomy, empathy]

Specters of Social Antagonism: The Cultural Psychodynamics of Dream Aggression among the Tzotzil Maya of San Juan Chamula (Chiapas, Mexico)

Kevin P. Groark

In this article, I present an analysis of “persecution dreams” among the Tzotzil Maya of San Juan Chamula, discussing the complex connections among sickness, interpersonal aggression, ideologies of social antagonism, and the spectral phantasies that shadow these social phenomena. Building on this ethnographic foundation, I present a “cultural psychodynamic” account framed in terms of projective-introjective dynamics (functioning at both the individual and social levels), arguing that the aggression dream serves as an experience structure in which inner and outer realities become deeply interwoven—often resulting in an increased sense of insecurity and existential threat. At its broadest level, this article is concerned with the affective dimensions of dream life, the processing of real affects and social relations within the register of phantasy, and the transposition of these phantasy-laden feelings back into waking life, where they influence not only the individual’s sense of well-being, but the tenor of actual interpersonal relations.

“At Such a Good School, Everybody Needs It”: Contested Meanings of Prescription Stimulant Use in College Academics

Amy Cooper, Lisa McGee

Approximately 15% of US college students have used Adderall or other stimulant medications without a prescription or not as prescribed. The development of college academics into a field of practice amenable to unauthorized pharmaceutical intervention suggests a growing acceptance of pharmaceutical self-fashioning among young people in the United States. However, analyzing illicit stimulant use from college students’ perspectives, we documented significant contestation over the practice’s acceptability. For some, unauthorized stimulant use violated the rules of fair play, but for others it was an understandable strategy to gain an edge and maximize one’s “return on investment.” Viewing college academics in market-oriented terms encouraged students to understand illicit stimulant use as an expectable (if not always morally acceptable) strategy for managing the competition of college life and a postrecession job market. This analysis shows how the moral valence of unauthorized stimulant use is strongly shaped by the sociocultural context that shapes people’s realities.

Health and Place

Smelling therapeutic landscapes: Embodied encounters within spaces of care farming

Richard Gorman

The conceptual framework of ‘therapeutic landscapes’ has been used as a means of considering the significance of specific environments, spaces, and places for aspects of health. Building on a growing attention to the sensory elements of spaces of health and wellbeing, this article mobilises empirical research on ‘care farming’ practices to discuss how smellscapes come to be crucial in fulfilling anticipations, imaginations, and expectations of a ‘therapeutic space’. This article highlights how embodied relationships with specific scents can constitute a therapeutic encounter with place, actively influencing practices and engagement with(in) place, and the ways by which place can have a meaningful affect on health.

(Em)placing recovery: Sites of health and wellness for individuals with serious mental illness in supported housing

Myra Piat, Kimberly Seida, Judith Sabetti, Deborah Padgett

This study used photo-elicitation methodology to explore how the move from supervised to supported housing affects recovery and community connections for individuals living with serious mental illness (SMI) in four Canadian cities. Qualitative interviews conducted in 2015 revealed five themes: (1) the characteristics distinguishing home from housing; (2) the importance of amenities offered by supported housing; (3) the connections between accessibility, mobility, and wellbeing; (4) the role of certain places in facilitating aspects of recovery such as offering hope or facilitating social connectedness; and (5) the concrete and metaphorical impact of changing vantage points on identity (re)construction. Utilizing therapeutic landscapes as an analytical framework, and combining insights from the health geography, and mental health (MH) housing and recovery literatures, this study deepens current understanding of how everyday places—conceptualized as therapeutic landscapes—directly and indirectly support MH recovery for individuals with SMI. Implications for research on housing, and on the spatial aspects of recovery processes are discussed.

Pills in paradise: Exploring international lifestyle and retirement migrants’ perceptions of the pharmaceutical sector on Cozumel Island, Mexico

Leon Hoffman, Valorie A. Crooks, Jeremy Snyder

International lifestyle and retirement migration is a growing phenomenon, yet little is known about migrants’ experiences of health care in destination countries. This includes use of and access to pharmaceutical selling establishments. This article explores international lifestyle and retirement migrants’ experiences and perceptions of the local pharmaceutical sector on Cozumel Island, Mexico. Qualitative data, collected through semi-structured interviews (n = 26), finds that participants are concerned with accessibility, quality and communication within the island’s pharmaceutical sector. Subsequent analysis suggests that these concerns arise through comparison with previous health care environments and that migrants attempt to remedy them by spatially reorganising their pharmacy engagements through practices which may contribute to adverse health outcomes.

Journal of the Royal Anthropological Institute

Zoonotic diagrams: mastering and unsettling human-animal relations (open access)

Christos Lynteris

This article approaches interspecies relations through an examination of the prevalent visual device employed in the representation of animal-human infection in the life sciences: the zoonotic cycles diagram. After charting its emergence and development in the context of bubonic plague, I explore how this diagrammatic regime has been applied in two distinct practical contexts: a plague warning sign on the Grand Canyon National Park hiking trail; and the on-line public information campaign launched by the US Centers for Disease Control and Prevention (CDC) in the wake of the Ebola outbreak of 2014-16. The article demonstrates the principal ontological and biopolitical operations of these diagrams, arguing that, far from simply summarizing epidemiological narratives of animal-human infection, they function both as pilots of human mastery over human-animal relations and as crucial sites of unsettlement for the latter.

Settler indigeneity and the eradication of the non-native: self-determination and biosecurity in the Falkland Islands (Malvinas)

James J.A. Blair

This article analyses how settlers of the Falkland Islands (Malvinas) construct themselves as ‘natives’ through environmental management. Taking a multispecies ethnographic and historical approach to studying the Falkland Islanders’ self-determination claim, I explore a series of ecological practices that demonstrate how some nonhumans become institutionalized into systems of racial and colonial classification whereas others appear natural. I show how agroindustrial and technoscientific value systems categorize human and nonhuman cohabitants according to degrees of political, economic, and ecological status through particular periods in the Falklands: from the eradication of ‘native pests’ (1833-1982) to defence against ‘alien invaders’ (1982-present). Towards a conclusion, I analyse how Islanders have begun to uproot their own ecological imperial past through removal of British-introduced ‘invasive’ species and native habitat restoration. The article argues that attention to how settlers colonize with natives contributes significantly to a critical multispecies anthropology with broader implications for debates on ethnogenesis and indigeneity.

Top of the heap: Noelle Sullivan by Hannah Gibson

2 Octobre 2017 - 3:44pm

For this installment of Top of the Heap, I was delighted to work with Noelle Sullivan who is an Assistant Professor of Instruction in Global Health Studies and Anthropology at Northwestern University.

When first asked to contribute to Top of the Heap, I grabbed my favorite recent ethnographies and sat them in a pile. Then I realized that Warwick Anderson compiled a stunningly similar list two years ago. To his list, I would add Alex Nading’s Mosquito Trails: Ecology, Health and the Politics of Entanglement, as I find his analytic lens of “entanglement” particularly insightful. Anderson’s list, with the addition of Alex Nading’s outstanding work, comprise my go-to ethnographies in medical anthropology: work that combines brilliant writing with the messiness of place, while grappling in some way with what Didier Fassin called “that obscure object of global health”. They have been instrumental in expanding my thinking on my own research in Tanzania, and I have used these books extensively in teaching students to critically analyze the politics of global health, and their own good intentions.

Which brings me to the parts of my heap that I’m just starting to work through, or am planning to revisit. Over the last several years I’ve been able to observe and explore how health facilities in Tanzania attempt to innovate around the gaps in donor and government attention, or how they engage with or attempt to stretch targeted and highly-funded donor programs in novel ways. As I’ve observed the semi-privatization of Tanzanian public hospitals, and hospitals’ various attempts to make their institutions marketable to various foreigners (short-term foreign clinical volunteers being the subject of my current work), I find myself increasingly exploring questions at the intersections of market logics, governance, and moral economies within and beyond global health.

In this light, on my list to re-read are Salmaan Keshavjee’s Blind Spot: How Neoliberalism Infiltrated Global Health and Hannah Brown’s 2015 article “Global health partnerships, governance, and sovereign responsibility in western Kenya”, published in American Ethnologist. Keshavjee’s book is outstanding it is ability to trace how neoliberal logics became the presumed means to wider social and moral goods within and beyond global health. Brown’s article tackles the prominent principle of “partnership” in global health. What happens to a public hospital when it is infiltrated by a variety of “external partners”? Brown’s article, along with Alice Street’s Biomedicine in an Unstable Place, and Johanna Crane’s Scrambling for Africa, are in my view excellent examples of the productive possibilities of analytical convergence of medical anthropology, economic anthropology, science and technology studies, and anthropologies of the state.

Some of the books on my “to read” list grapple with issues increasingly important to me in terms of making sense of the market logics that I’m increasingly observing infiltrate the hospital worlds where I do my research. These include:

  • Andrea Muehlebach’s The Moral Neoliberal: Welfare and Citizenship in Italy. I’m highly curious about the role of voluntarism in the absence of state social safety nets, and how morality plays into sentiments of voluntarism in such contexts. I expect reading this alongside a re-reading of Vincanne Adams’ Markets of Sorrow, Labors of Faith will yield considerable insights.
  • Sharon Kaufman’s Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. Kaufman examines how industry and insurance inform the American healthcare system, and to what ambiguous or even detrimental ends for patients and the health professionals that serve them.
  • Karen Ho’s Liquidated: An Ethnography of Wall Street is also on my list. If we’re to understand market logics, we must be attentive to the ways that these may differ based on place and subjectivity. I expect this book will add substantially to my understanding of market logics, which Susan Erikson tackles in relationship to global health in her chapter in Metrics: What Counts in Global Health.
  • Finally, Anna L. Tsing’s The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins is on my list in part because within the healthcare system in low income countries, as well as those characteristic of post-disasters (where humanitarian economies are most prominently visible), “ruins” generate considerable moral and material economies that, in my view, are critical to understanding how global health operates in practice in countries with under-resourced health systems. In this sense, exploring the multiple manifestations of capitalist ruins becomes exceedingly relevant to both global health and humanitarianism. Plus, I have long admired her other work and look forward to delving into her most recently published insights.

Noelle Sullivan is an Assistant Professor of Instruction in Global Health Studies and Anthropology at Northwestern University. Her research spans two projects, one a longitudinal hospital ethnography in Tanzania tracing the effects of health sector reform and global health governance and funding practices on biomedical institutions; the other an ethnographic study of foreign short-term clinical volunteering in Tanzania, and the wider moral and market logics that inform voluntarism in health care settings in low income countries. Her work has appeared in the edited volume Volunteer Economies: The Politics and Ethics of Voluntary Labour in Africa, Medical Anthropology, Space and Culture, and African Diaspora. Her research on foreign clinical volunteering has been featured in media outlets such as Al Jazeera’s The Stream, The Daily Beast, and the Orlando Sentinel.  

 

Photo credit: Book Fantasy. Retrieved from http://www.peabodylibrary.org/freeforall/?p=2584

Working for the Race: Black Scholars, Invisible Labor, and the Baggage of Creating Space by Ayah Nuriddin

27 Septembre 2017 - 5:44pm

Photograph taken by Dr. Chanda Prescod-Weinstein, February 25, 2017

“Critical Histories, Activist Futures: Science, Medicine and Racial Violence,” a conference hosted by Yale University in February 2017, was a welcome departure from the Anglo-centrism dominating the fields of the History of Science and Medicine (HS&M). Focusing on the history of knowledge production, dissemination, and professionalization using objects, practices, and ideas, these historical subfields too often ignore the politics of race and marginalization.

Part of this predicament is historical—who became practitioners of science and medicine throughout history and why? These fields, at least as we understand and define them, required access to resources including financial support, laboratory equipment and spaces, education perhaps through universities, and access to books, to name a few. Given the history of social inequality, certain groups of people lay at the center, others at the periphery, of the historian’s gaze. Though African Americans, in particular, traditionally lie at the periphery of HS&M, they are not altogether absent.  They are often on the table, but not at the table. Their accomplishments and contributions have been largely overlooked, leaving an untapped trove for scholarly inquiry. As our panel argued, these silences are inherently violent. As Ezelle defined it, violence (broadly speaking) is any expression or deployment of unbalanced power.

Those scholars who research these underexplored subjects are often caught in a liminal space, exerting unrecognized energy while translating the value of their work to the broader field. These personal reflections from each panelist illustrate the hidden dilemmas in bringing African American scholarship to the forefront of HS&M. This dilemma is multifaceted: academic spaces relegate African American scholars to the margin, general familiarity with canonical African American texts, traditions, and experiences is lacking and not encouraged by the field, the scholarly labor to advance critical race scholarship is disproportionately performed by scholars of color, and finally, HS&M are not diverse fields.  Black scholars in HS&M, therefore, are doubly burdened. Though their work necessitates critical racial inquiry, along with the added labor of moving racial scholarship from the margins to the center, it is done to a far lesser degree by scholars working with dominant (white) racial groups.  Essentially, the normalization of dominant identities in contemporary society is reflected in the divisions of labor among, and the scholarly products of, historians.

While organizing this panel, we discovered that racial violence in HS&M is a multi-layered phenomenon, from the historical subjects we study, to our very presence as young scholars in the field. It is a difficult project, therefore, to focus on African Americans in HS&M.  It is doubly difficult to be African American historians working on such history.

 

Making the “Race Panel”

When Ayah first received Yale’s call for papers, she knew the conference was for her.  Her adviser agreed. She saw this conference as an opportunity to amplify voices usually marginalized in the field. While attending the 2016 Joint Atlantic Seminar for the History of Medicine (JASMED), Ayah recruited Ezelle, who she met the previous year. At JASMED we were both placed on what was essentially the “race panel,” the singular panel or conversation at many academic conferences serving as a catch-all for critical race scholarship. This was a familiar experience. As Black scholars, our work is often relegated to the singular “race panel” in the conference though our work differs in scope and perspective. We were among the few African American scholars attending.  At another conference, Ayah and Shelby bonded over the similarities of their topics. Recognizing that the network of graduate students working on the intersections of race and medicine was extremely small, we worked to align our topics more closely for future panels. With Shelby’s unique perspective, Ezelle’s critical eye, and Ayah’s ability to connect historical themes, as well as young historians themselves, we decided to form a panel focused on black experiences and medical violence in hospitals.

Unlike other conferences, where critical race scholarship is often collected into a heterogenous “race panel,” this conference placed race and racial violence at the center of the conversation. As such, panelists and conference participants benefitted from a sustained focus on the subject. The resulting panel, “Danger on the Ward: African Americans and Violence in Hospitals” opened this very successful conference. Dr. Corey Williams, an apt addition, provided opening remarks, reflecting on his experiences as a physician to help frame the panel discussion.

“Critical Histories” gave us an opportunity to present our work and make space for ourselves. Shelby’s paper was birthed from what she recognized as a lack of understanding of an all-too-familiar African American narrative of discrimination and determination: Malcolm Little’s coming-of-age tale in Lansing – and later, Detroit – Michigan. The infamous murder of his radical father and confinement of his activist mother played a major role in Malcolm’s radicalization and piqued the interest of every college student who perused The Autobiography.  Pulling together other primary materials that could substantiate Malcolm’s largely incomplete memories, her project quickly came into conflict with previously underexplored questions of race, gender and insanity.

For Ezelle, the panel offered an opportunity to critique oversimplified conclusions of “racism” as the only means to explain African Americans’ inferior treatment in medical institutions.  Using Homer G. Phillips Hospital, an all-black hospital in St. Louis, as a case study, Ezelle noted how “racism” has become a black box itself occluding more complex forms of violence within and across racial groups.  Ayah’s paper united her two current research projects on the history of African American engagement with eugenics and the desegregation of the Crownsville State Hospital in Maryland. She examined the ways in which African Americans experienced physical, structural, and symbolic violence in American medical institutions and the ways that they responded, resisted, and in some cases participated in medical violence. African Americans were not passive victims, rather they used science and medicine to challenge racial assumptions of inferiority and strategized to improve access to health care for the collective improvement of the race. Though black eugenics and the desegregation of Crownsville State Hospital illuminate different historical moments, together they tell us how African Americans actively worked to challenge violence, in all forms, to medically uplift the race.

 

Invisible Labor in the Field

As scholars of color, participating in critical race scholarship is often seen as both our burden and privilege, one that some scholars have abandoned for fear of seeming “too” focused on race. A privilege in that, we are integral parts of reworking historical narratives that have for too long been skewed and incomplete, but a burden in that we carry the weight of advancing unheard voices and creating more spaces for other scholars of color. We have taken on these roles at our home institutions, scholarly networks, and at prestigious universities, like Yale, to bring attention to historical silences too important to be left dormant.

The networking required to create this panel is just one example of “invisible labor” required of Black scholars. It is the labor that is done behind the scenes, often out of a sense of personal responsibility to the race, to help create space for other African Americans, and to catalyze critical racial discourses. Much of this labor is not valued or recognized by traditional academic metrics. Moreover, our research and our very being as young scholars, requires such labor to become visible to the broader field. When opportunities arise to examine the impact of race, African American scholars feel an additional responsibility to attend and participate for “the cause,” that is, to underscore the centrality of race in HS&M, to highlight the ongoing need to examine how racial biases create inequality, and to create more space for black scholars.  This burden and privilege is nothing new in African American intellectual history, though it is certainly time that our colleagues are cognizant of the dilemma.

Corey, for example, recalls the very common practice of spending hours on the telephone reaching out to minority medical school applicants, to encourage them to consider Yale for medical training. Shelby has always found her work in the margins as a dual doctoral candidate in African American and African Studies (AAAS) and History. Very seldom has she had the opportunity to collaborate with scholars interested in unpacking race and inequality in HS&M.

Race has yet to become an essential category for historical analysis. Race scholars, particularly those studying African Americans, face difficulties communicating the importance and relevance of their work, especially when a general familiarity with canonical African American literatures, and a particular knowledge of under-studied African Americans as historical actors is rare in the field. Additionally, some scholars within the field hesitate to critically engage with such work because of these large gaps in knowledge. This is not to say, however, that “race” as a useful category of historical analysis only applies to racial minorities–historians of science and medicine could, for example, creatively use new sociological scholarship in “whiteness studies” to yield new insights into how racial categories, and the ensuing power and privileges granted by them, influenced the development of science and medicine, especially in the modern era. Historians of science and medicine, after all, have done significant work demonstrating that science and medicine are not immune to socio-political forces and often reflect these broader forces.

We hope that the “Critical Histories” model will diffuse throughout the discipline.  Academic societies are beginning to respond to contemporary activism by highlighting racial minorities, the American Historical Association’s upcoming meeting is one such example.  If the contemporary political moment has taught us anything, it is that the burden is on all of us, not just Black scholars or any scholar with marginal identities, to witness the injustices (and successes) of the past and present. We must communicate them to our audiences.  More importantly, it is our duty to add these to our bodies of knowledge.  We are the #blackpanel.

 

Ayah Nuriddin is a Ph.D. student in the Department of the History of Medicine at Johns Hopkins University. She is interested in the ways in which African Americans use medicine and science to do the work of racial activism in the 20th century. Her dissertation project will examine how African Americans developed and mobilized eugenic discourse within the context of racial uplift ideology.

Shelby Pumphrey is a dual doctoral student in the African American and African Studies Program and the Department of History at Michigan State University. Her dissertation project explores Central State Asylum for the Colored Insane, the first mental hospital for African Americans in the United States.

Ezelle Sanford III is a doctoral candidate at Princeton University’s Program in the History of Science. His dissertation project, “A Source of Pride, A Vision of Progress” proposes to uncover the complex inter- and intra-racial social relationships within and surrounding the Homer G. Phillips hospital of St. Louis, MO, while providing new insights for writing institutional history.

Dr. J. Corey Williams completed his medical training at Johns Hopkins School of Medicine. Dr. Williams is currently a resident physician at Yale University Department of Psychiatry. His interests, research, and writing are focused on racial and gender identity development, disruptive behaviors in children, and academic curriculum design.

Critical Histories, Activist Futures” is a series edited by Tess Lanzarotta and Sarah M. Pickman.

Mothers Matter: Developing the ‘Waiting Mother’ by Kylie Marais

18 Septembre 2017 - 8:18pm

“Waiting indicates that we are engaged in, and have expectations from, life; that we are on the lookout for what life is going to throw our way” (Hage, 2009: 1).

Waiting is an inevitable part of human existence. Whether we are waiting for the bus, waiting to heal, waiting to give birth, or waiting for the day to begin or end, waiting manifests for a variety of reasons, durations, and may be accompanied by a wide range of emotions. Waiting can be regarded as subjective or objective (Fujita, 1985); modal, relational or active (Auyero, 2011); or as political, social or cultural (Hage, 2009). Waiting can also be perceived as a fruitful process, providing one with time to think; “waiting can be a rewarding experience, eliciting reflection on time and human existence (Schweizer, 2008: 126). On the contrary, for Javier Auyero (2011), waiting implies ideas of powerlessness and helplessness, which does not affect everyone in the same way. Waiting, according to Auyero, can be interpreted as stripping the waiting person from his or her agency. However, while it is common to assume that “waiting is a passive modality of being where people lack agency” (Hage, 2009: 2), waiting can also be agentive in nature. Waiting, can thus entail “passive activity” (Crapanzano, 1985) or “active passivity” (Hage, 2009). Both versions imply waiting as a form of activity, action, or something we do. Ultimately, waiting offers many lenses through which to understand and make sense of the complexities of everyday life.

In my research, which sought to evaluate the feasibility, efficiency, and sustainability of a video card intervention that was aimed at educating waiting pregnant women and mothers in a local state antenatal clinic about early childhood development (ECD) and maternal and child health (MCH), waiting emerged as the activity that took the most time in the clinic. As an analytical tool, the concept of waiting proved useful in understanding my research process, as well as how time affected pregnant women and mothers in the clinic. Since waiting affected all pregnant women and mothers in the Community Health Clinic (CHC), where my research was conducted, this paper shows how the time that women spent waiting in clinic was normalised for the sake of development. More specifically, I will argue that (waiting) mothers were made to matter within the clinic space via development interventions supplied by the state and external development agencies. This was done by reframing the waiting time of women as ‘wasted time’ and as an ‘opportunity’ during which to educate specifically pregnant women and mothers about ECD and MCH developmental issues. 

Waiting as Wasted Time

“When we wait in the doctor’s clinic, for example, we surrender our time to another. This is willingly done, except when it takes too long, when we start to feel out of synchronicity with the time that we think it should take. Waiting, then, becomes a waste of time…” (Tan, 2009: 73; italics in original). When waiting is perceived as wasted time, it can evoke subjectively negative emotions within the person who is expected to wait; as Crapanzano states, “waiting produces in us feelings of powerlessness, helplessness, and vulnerability — infantile feelings — and all the rage that these feelings evoke” (1985: 45). The lengthy periods of waiting experienced in South African public spaces – especially in the waiting areas of public services institutions, such as “home affairs for birth registration, SASSA offices for grant applications and collections, primary healthcare clinics for antenatal visits and immunisations” (NGO Pulse, 2014) – were normalised and perceived by those with power, such as the state and development agency, as time that was ‘wasted’ and as time that patients should make available in order to access state resources. In other words, they viewed waiting as time that must be ‘endured’ and simultaneously as time that must be used ‘productively’. When this occurs, waiting can be seen as an ‘opportunity’ during which to achieve certain goals.

This was the case for my research project which was aligned with and supported by the “Waiting Room Project”, launched by The Innovation Edge in November 2014 (NGO Pulse, 2014), that called for creative and innovative ideas to transform various ‘waiting places’ into ‘engaging spaces’. As I will show, however, the assumption that ‘waiting places’ are not necessarily ‘engaging places’ is somewhat erroneous since a great deal of activity happens in waiting spaces. The video card intervention was supported by The Innovation Edge because it was imagined and anticipated that the intervention would be able to ‘transform’ the CHC antenatal clinic and MOU waiting places into engaging spaces. In particular, it was expected that the video card would enable (working class) pregnant women and parents to learn about foetal and infant care behaviours via the video as they sat in waiting areas of the public CHC. Three assumptions consequently rendered this project possible: (1) waiting in public healthcare facilities was inevitable and normal; (2) waiting places were not necessarily engaging spaces; and (3) waiting time and waiting spaces were wasted opportunities. It was therefore as a result of these assumptions about waiting that the ‘waiting mother’ was produced, developed and made to matter within the CHC waiting rooms.

Waiting for Something

“Waiting is always waiting for something. It is an anticipation of something to come — something that is not on hand but will, perhaps, be on hand in the future” (Crapanzano, 1985: 45). I entered the clinic with a narrow idea of what, and how long, pregnant women waited for: to give birth (spanning over several months) and to be assisted by nurses (ranging from minutes to hours); however, my observations revealed that the “object of waiting” (Crapanzano, 1985: 45) for the pregnant women in the CHC extended far beyond these two simplified forms of waiting. Furthermore, the waiting time and appointment lengths varied for each woman, ranged from twenty minutes to three hours. During these minutes to hours that pregnant women spent waiting in the CHC antenatal clinic, it can be argued that the women were “always waiting for something” (Crapanzano, 1985: 45). Whether pregnant women waited for the clinic to open, for their clinic cards to be checked, for their names to be called, for their appointment dates to be issued and to arrive, for their appointments to begin or end, or for their test results, the process of waiting for and in between these standardised procedures, was always presented as ‘inevitable’ and ‘normal’ in the public healthcare facility. The notion that waiting is ‘inevitable’ and also ‘beyond our control’ is explored by Ghassan Hage (2009). Within its (albeit ambivalent) capacity to be agentive, waiting can also be political, as there is a politics around who has to wait, what waiting entails, how to wait, and also how waiting is organised into a social system (Hage, 2009: 2). In this regard, waiting is linked to power, an idea supported by Pierre Bourdieu who states, “the all-powerful is he who does not wait but who makes others wait” (2000: 228). Waiting is thus not only shaped by the person who is waiting, but is also determined and shaped by those providing whatever it is that people are waiting for (Hage, 2009: 3). This is the case for public healthcare facilities, where the lack of efficiency, poor services and the scarcity of specialised medical professionals is measured by the duration of waiting time. Nursing staff at the CHC therefore experienced waiting differently to pregnant women.

Analysing waiting in a welfare office in Bueno Aires, Javier Auyero’s (2011) research represents the subjective mode of waiting (see Fujita, 1985) and demonstrates how the waiting experiences of poor people in the welfare office were grounded in (subjective) feelings of confusion, uncertainty and arbitrariness. Auyero argues that “these waiting experiences persuade the destitute of the need to be patient, thus conveying the implicit state request to be compliant clients” (Auyero, 2011: 6). As found by Auyero, the welfare clients often compared their waiting time at the welfare office to the waiting time in public hospitals: “in both places they have to (silently) endure; they have to act not as citizens with rightful claims but as patients of the state” (Auyero, 2011: 23). Auyero (2011) further categorises waiting as modal, relational, and active. First, waiting is a modal experience; patients “have to wait for almost everything (e.g. housing, health services, employment)” (2011: 9). Second, waiting is a relational experience; “they create or mobilize a set of relations or networks that allow them to spend long hours there. While there, they often meet with friends and relatives who help them tolerate and make sense of those boring and tiring hours” (Auyero, 2011: 14). Third, Auyero’s ethnographic observations revealed that welfare clients kept themselves active while they waited, by playing with their children, feeding and changing their infants, walking around, leaving the building to buy snacks, playing games on their cellular phones, or occasionally reading the newspaper (Auyero, 2011: 15).

Based on my observations, the waiting periods for the pregnant women in the CHC antenatal clinic can also be categorised as modal, relational and active. While most of the women sat alone and in silence, waiting for their names to be called by the nurses and for their antenatal appointments to begin (i.e. their waiting time was modal); some were accompanied by their partners or fathers of their babies, family members, friends, and younger children (i.e. their waiting time was relational). Moreover, some women browsed through the Mother, Child Health and Nutrition booklets and breastfeeding pamphlets that were provided to them by the nurses; some listened to the peer counsellors’ educational talks; some were busy on their cell phones, either playing games, texting, making phone calls, or browsing the Internet; and some waited by eating food or not eating at all (i.e. their waiting time was active). Nevertheless, while many of the women managed to occupy themselves while they waited in the antenatal clinic waiting areas, and thus had ‘some’ control over their waiting time, this was not always an enjoyable experience for all.

For Zara, a twenty-three year old woman from Rwanda, who was six months pregnant with her second child at the time of the interview, the process of waiting in the CHC antenatal clinic was “very boring”, adding:

Because, like you sit here like, I’ve been here from half past six till now [13:00] and I’m sorry, there’s like people that didn’t bring food, my husband brought me food, but then, I mean imagine like for a pregnant person from six o’clock until now and you did not have something to eat then that’s not really good.

Zara’s period of waiting was the longest I had encountered during my fieldwork. Even though her appointment was for 07:00, she arrived thirty minutes beforehand to ensure that she would be assisted “on time”. In total, Zara spent seven hours at the antenatal clinic, of which more than six hours were spent ‘waiting’. In another example, Robyn, a twenty-five year old woman, who was nine months pregnant with her first child at the time, found waiting at the antenatal clinic to be tiresome. However, since her medical aid scheme had ended after her work contract recently expired, Robyn was prepared to wait because she valued the free healthcare services offered by the state clinic, even though the duration at the public clinic far exceeded the waiting time at the private clinic she previously attended. Her stance is revealed as follows:

Kylie: How long have you been waiting?

Robyn: Yoh, ok, no I can’t lie [laugh], what time is it now?

Kylie: It’s half past one (13:30).

Robyn: Yoh, I came here… Say, an hour, say an hour.


Kylie: So half past twelve? How long do you usually wait at the private clinic?

Robyn: No, they do appointments, when I get here they see me, when they’re busy, it’s like 10 minutes max.

Kylie: Ok, so this is long?

Robyn: [laugh] No, this is long! But rather be patient and get good service than get help quick quick and next patient. No, I trust government.

The feelings of boredom, exhaustion, and frustration that accompanied long durations of waiting at the CHC were also revealed to me in other unexpected situations. Shortly after interviewing Robyn, I went outside for a short break, where I was approached by a young man. Making small talk, he said to me: “Yoh! Hie’ wag ‘n mens tot jy dood is” (“Gosh! Here, one waits until one dies”). All I could do was sympathise. As I stood outside, Robyn passed by me on her way back from buying a snack from the informal trader; she, too, suddenly commented:

Yoh! I must still wait long… Probably until tonight!”. Robyn was eventually done with her antenatal appointment and left the clinic at 14:40. Having arrived around 12:30, she had spent over two hours at the clinic. While some working class pregnant women found waiting to be “boring”, others were content with waiting, provided they received free and adequate antenatal services from the clinic, and that they had something with which to occupy their waiting time.

The way that ‘time’ is rationalised, counted, and materialised in our contemporary world, and especially as it is materialised within public healthcare facilities, means that some people (patients) are constituted as having enough or even a surplus of time and others (staff) as not having enough time. Pregnant women, in particular, spent many minutes to hours waiting in the CHC antenatal clinic. The power to make pregnant women (and other patients) wait rested not in the hands of the state who was in control of public healthcare resources. As such, (working class) pregnant women who wanted or needed to access free antenatal services and other state resources were not only expected to ‘make time’ to attend their scheduled antenatal appointments, but once they were in the clinic, the women were also constituted as having ‘time to waste’. Instead of reducing the time that pregnant women spent waiting or improving the speed and quality of antenatal services offered by public clinics, the state capitalised on their waiting time. The state, together with the development agency supporting the video card intervention, consequently sought to normalise ‘waiting’ by implementing interventions within the clinic waiting spaces. As a result, the ‘waiting mother’ was produced, developed, and made to matter within the clinic as a way to distract from the long durations of waiting time that had become normalised in the waiting areas. In particular, she was made to matter in a way that would reframe her waiting time as an ‘opportunity’ to learn. By choosing to view waiting time as ‘wasted time’ and as an ‘opportunity’ through which to transform ‘waiting places’ into ‘engaging spaces’, the implementation of the video card intervention in the CHC waiting areas not only contributed towards the normalisation of waiting, but also resulted in the devaluing of all patients’ time, but particularly women’s time. This was primarily because the creation and implementation of the video card rested on the assumptions that firstly, women had sufficient time to spend/waste waiting in the clinic during their antenatal clinic visits, and that secondly, they had nothing to do while they waited, and that the waiting areas were not engaging spaces. My research, however, found the opposite to be true. For instance, none of the pregnant women explicitly referred to their waiting time in the CHC antenatal clinic as ‘wasted time’ because they knew they were “waiting for something” that would benefit their own health, and the health of the babies. Pregnant women thus attended their antenatal appointments at the public clinic for specific reasons, and willingly surrendered their time for the sake of their unborn babies. Moreover, while some women spent far more hours waiting in the antenatal clinic than others, all women were relatively busy during their ‘waiting’ times on antenatal visits, either moving between nurses’ examination rooms, or occupying their time as they pleased. While many women valued the video card intervention, the video card was introduced into the CHC waiting areas under numerous false assumptions.

 

References

Auyero, J. 2011. Patients of the State: An Ethnographic Account of Poor People’s Waiting. Latin American Research Review, 46(1): 5-29.

Crapanzano, V. 1985. Waiting: The Whites of South Africa. London: Granada Publishing.

Fujita, M. 1985. Modes of waiting. Phenomenology + Pedagogy, 3(2): 107-115.

Hage, G. 2009. Waiting. Australia: Melbourne University Press.

NGO Pulse. 2016. Call for Ideas: Innovation Edge Launched in South Africa. [online] SANGONet. Available at: http://www.ngopulse.org/opportunity/call-ideas-innovation- challenge-launched-south-africa [Accessed: 27 June 2016].

Schweizer, H. 2008. On Waiting. London and New York: Routledge.

 

Kylie Marais is a PhD student in Anthropology at the University of Cape Town (UCT), and is the recipient of the 2017 Wadsworth African Fellowship from the Wenner Gren Foundation. She holds an Honour’s degree in Social Anthropology and a Master’s degree in Practical Anthropology, both from UCT. Her research interests include early childhood development, motherhood, gender and (African) sexualities.  She is a member of the ‘Anthropology of the First Thousand Days of Life’ group, chaired by Prof. Fiona Ross (UCT). The research presented here is based on Kylie’s larger Master’s project, titled ‘Mothers Matter: a critical exploration of motherhood and development through a video card intervention in a local clinic’.

Special Issue! “Diverse Bodies” by Anna Zogas

18 Septembre 2017 - 4:50am

In case you missed it, here’s a special issue that may be of interest: In Anthropology & Medicine, Diverse Bodies: The Challenge of New Theoretical Approaches to Medical Anthropology. Below, you’ll find the abstracts. Enjoy!

Diverse bodies: the challenge of new theoretical approaches to medical anthropology (excerpt) (open access)
Simon Cohn & Rebecca Lynch

In recent years, medical anthropology has benefitted a great deal from debates in science studies, and in particular, the focus on knowledge practices (Pickering 1995) and epistemic cultures (Knorr Cetina 1999). At the same time, within anthropology, work exploring post-human orientations – for example, the focus on materiality and the role of objects, human–animal relations and environmental approaches – have invigorated debate not only about how central people should be in our ethnographic accounts, but also from what, or who’s, perspective (Viveiros de Castro 1998). Core to all these areas of study has been an increasingly commonplace reference to the word ‘ontology’. Although important differences exist in the use of the term, as a starting point let us say the word concerns not only the status of what is known, but also the status of that which knowledge is based on. This so-called ‘ontological turn’ in anthropology over the last decade is consequently both a theoretical and methodological set of arguments that seeks to provide new insights to old problems (Holbraad and Pedersen 2017).

But surprisingly, these debates have only tentatively been drawn on directly in medical anthropology to explore the relationships between culture, biology, health and medicine. We say surprisingly because the subfield has always had to confront such things as the viability of universal illness categories, how to evaluate the efficacy of local treatments, or the problem of representing the experience of others, especially when they are suffering or in distress. So, by engaging with some of the work from STS and mainstream social anthropology, this Special Issue presents a range of contrasting papers that explore the extent to which such work not only might offer genuinely new analytic approaches to think through established concerns we, as medical anthropologists, have to confront, but also potentially generate new areas for enquiry. But given the imperative of medical anthropology – to engage with illness and suffering with a view to helping alleviate them – this issue of Anthropology and Medicine also extends the arguments to also ask what pragmatic and ethical contributions they might make. Finally, a key matter that the overall collection raises is the extent to which the stale opposition between applied and more theoretical anthropology might be discarded once and for all through arguments that emphasise the cultural basis of even the most fundamental concepts we draw on, including any distinction between knowledge and practice.

Counting bodies? On future engagements with science studies in medical anthropology (open access)
Emily Yates-Doerr

Thirty years ago, Nancy Scheper-Hughes and Margaret Lock outlined a strategy for ‘future work in medical anthropology’ that focused on three bodies. Their article – a zeitgeist for the field – sought to intervene into the Cartesian dualisms characterizing ethnomedical anthropology at the time. Taking a descriptive and diagnostic approach, they defined ‘the mindful body’ as a domain of future anthropological inquiry and mapped three analytic concepts that could be used to study it: the individual/phenomenological body, the social body, and the body politic. Three decades later, this paper returns to the ‘three bodies’. It analyses ethnographic fieldwork on chronic illness, using a rescriptive, practice-oriented approach to bodies developed by science studies scholars that was not part of the initial three bodies framework. It illustrates how embodiment was a technical achievement in some practices, while in others bodies did not figure as relevant. This leads to the suggestion that an anthropology of health need not be organized around numerable bodies. The paper concludes by suggesting that future work in medical anthropology might embrace translational competency, which does not have the goal of better definitions (better health, better bodies, etc.) but the goal of better engaging with exchanges between medical and non-medical practices. That health professionals are themselves moving away from bodies to embrace ‘planetary health’ makes a practice-focused orientation especially crucial for medical anthropology today.

Hungers that Need Feeding: On the Normativity of Mindful Nourishment (open access)
Else Vogel

Drawing on participant observation in a ‘mindful weight loss’ course offered in the Netherlands, this paper explores the normative register through which mindfulness techniques cast people in relation to concerns with overeating and body weight. The women seeking out mindfulness use eating to cope with troubles in their lives and are hindered by a preoccupation with the size of their bodies. Mindfulness coaches aim to help them let go of this ‘struggle with eating’ by posing as the central question: ‘what do I really hunger after?’ The self’s hungers include ‘belly hunger’ but also stem from mouths, hearts, heads, noses and eyes. They cannot all be fed by food. The techniques detailed in this paper focus on recognizing and disentangling one’s hungers; developing self-knowledge of and a sensitivity to what ‘feeds’ one’s life; and the way one positions oneself in relation to oneself and the world. While introducing new norms, the course configures ‘goods’ and ‘bads’ in different ways altogether, shaping the worlds people come to inhabit through engaging in self-care. In particular, the hungering body is foregrounded as the medium through which life is lived. Taking a material semiotic approach, this paper makes an intervention by articulating the normative register of nourishment in contrast to normalization. Thus, it highlights anthropologists’ potential strengthening of different ways of doing normativity.

Entangled local biologies: genetic risk, bodies and inequities in Brazilian cancer genetics (open access)
Sahra Gibbon

Engaging recent social science work examining the truth making claims of science and biomedicine, this paper explores how biology is being localised in Brazilian cancer genetics. It draws from ethnographic fieldwork in urban regions of southern Brazil working with and alongside patients, families and practitioners in cancer genetic clinics. It examines how different sorts of ‘local biologies’ are articulated in the context of research, clinical practice and among implicated patient communities and the way these can ‘recursively’ move across different spheres and scales of social action to extend and transform the meaning of the biological. It shows how the mattering of the biological in Brazilian cancer genetics is fundamentally informed by questions of inequity and care, even while multiple local biologies may obscure rather than reveal the biopolitics of cancer. In an era of epigenetics this raises new opportunities and challenges for anthropological analysis as intervention.

Birds, meat, and babies: the multiple realities of fetuses in Qatar (open access)
Susie Kilshaw

This paper explores miscarriage in a variety of Qatari contexts to reveal the multiple realities of the unborn. During 18 months of ethnographic research, a range of settings in which fetuses emerged were explored. The unborn are represented and imagined differently, particularly in relation to the ways they are located, with multiple beings emerging according to the context and position of the stakeholder. This paper considers fetuses produced within these contexts and considers how they can be different beings simultaneously. The paper reveals how categories meant to define these beings are in flux and are constantly negotiated; it reflects moments of ambiguity. The paper serves as an illustration of the way in which value-afforded pregnancy materials affects the contexts in which they emerge; this then loops back as context dictates the significance of the material, hence multiple realities of these beings.

The ontological turn meets the certainty of death
Maryon McDonald

The ‘ontological turn’ involves some anthropological points of long standing but the approaches recently coordinated into this turn have been presented as a ‘call to arms’, as shaking up ‘mono-realist singularities’ and as inherently political. This fighting talk has no doubt made important contributions to anthropology and insights from the ontological turn can help in anthropological understandings of medical practices. However, this paper contends that this helpfulness is also limited and that a call to arms may be inappropriate. This point is made through an ethnographic understanding of medical concern about the diagnosis of death.

 

Working with a fractional object: enactments of appetite in interdisciplinary work in anthropology and biomedicine
Bodil Just Christensen, Line Hillersdal & Lotte Holm

This paper explores the productive tensions occurring in an interdisciplinary research project on weight loss after obesity surgery. The study was a bio-medical/anthropological collaboration investigating to what extent eating patterns, the subjective experience of hunger and physiological mechanisms are involved in appetite regulation that might determine good or poor response to the surgery. Linking biomedical and anthropological categories and definitions of central concepts about the body turned out to be a major challenge in the collaborative analysis. Notably, the conception of what constitutes ‘appetite’ was a key concern, as each discipline has its particular definition and operationalization of the term. In response, a material-semiotic approach was chosen which allowed for a reconceptualization of appetite as a ‘fractional object’, engaged in multiple relations and enacted differently in each instance. This perspective produced creative contrasts and offered alternative explorations of both scientific knowledge production and anthropological practices. The paper thereby explores the interfaces between anthropology and medical science by attending to the challenges and opportunities that result from destabilising an assumed fixed and well-defined concept associated with the body.

More than Local Arrangements: How Conference Logistics Can Speak to Values by Sarah Pickman

12 Septembre 2017 - 3:27pm

In the fall of 2016, my colleagues Tess Lanzarotta, Marco Ramos, and I met as the core organizers for the “Critical Histories, Activist Futures” conference to hammer out our individual roles. We decided that I would take on the role of head of local arrangements, managing all of the practical logistics for the conference: food, room reservations, registration, etc. “Local arrangements” is, at first glance, a series of crucial but unsexy grunt work tasks. Perhaps, at this very moment, images from your own past of stacking folding chairs and wrestling with projector cords are beginning to swirl in your head at the mention of this phrase. Before you roll your eyes and click away, let me try to convince you that local arrangements can be a productive space to think about what an academic conference looks like and who it is for, as well as to grapple with the limits of the conference as a model for academic discourse.

I embraced the role initially because I do feel strongly that in order for an event to achieve its objectives, the mundane aspects must be taken care of and must run as seamlessly as possible. Prior experience organizing events has taught me that no matter how interesting and well-presented a symposium or lecture’s content is, if there is not enough food served afterwards or the room is very cold that’s all anyone will talk about. This is to say nothing of my own personal experience as a graduate student, scooping up free sandwiches at events and watching my professors race each other to the coffee dispenser during break times.

But over the seven months spent working on local arrangements for the conference, I also came to feel that it could be an avenue to express one of the primary concerns of “Critical Histories, Activist Futures”: to think broadly about what activism as scholarship might look like. How could even the seemingly minute details of conference planning speak to the values we, as conference organizers, were trying to express? We took inspiration from our colleagues on Yale’s campus. When we started to plan the conference in the summer of 2016 we were energized by the bold actions of NextYale and other activist organizations (especially those spearheaded by undergraduates) that could be seen and felt all over campus. As with activists on other university campuses across the United States, these Yale students were constantly derided by cable news pundits, newspaper journalists, and university administrators, and often some of their classmates too, as “snowflakes.” Supposedly, these students’ refusal to be subjected to a hostile learning environment, and their articulations of why Yale made them feel unsafe or unwelcome, was simply a lack of “grit” or an overabundance of sensitivity. We reacted to the “snowflake rhetoric” by making a conscious decision to foreground accessibility and inclusivity in organizing “Critical Histories.” This forced us to ask ourselves, on a practical level, how could our logistics help carve out the more inclusive environment we wanted for our event, even within the often hostile space of the university?

Some of the answers to these questions materialized in the following ways: Our registration form queried participants on their dietary restrictions and allergies and we shaped our catering plan to accommodate their answers. We reserved a nearby fridge for any attendees who needed to bring their own food. Student organizers checked the event space for the conference to make sure it was wheelchair accessible, and our registration form also queried participants on individual accessibility needs (one individual with low vision told us that we were the first conference organizers to offer them printed materials in a large font). We chose a room for the panels with a gender-neutral bathroom attached, and with a private room nearby that could be used easily by lactating mothers. We included a tribal acknowledgement in our opening remarks. We asked speakers in advance to inform us of their preferred pronouns. A few days before the conference we made nametags for all of the registered attendees and included a blue sticker on the nametags of Yale HSHM graduate students. We then informed all of the conference attendees that they could ask anyone with a blue sticker if they needed directions around campus or New Haven, or help with any similar issue. This list of practical steps is not intended as a way for my colleagues and me to pat ourselves on the back for organizing such an inclusive and accessible conference. Indeed, as some of the future pieces in this series will discuss, “best practices” and other frameworks meant to uphold concepts like diversity, inclusivity, and ethics often reify power imbalances or only serve to absolve those in power of any lingering guilt. Instead, this list is meant to point out that many of these steps are not regularly integrated into academic conference planning, when they easily could be, and when they go a long way towards setting the tone of an event and broadening the scope of who may feel comfortable attending.

However, we did recognize that ultimately, one of the biggest logistical hurdles to making our event as inclusive as possible was its location at Yale University. My fellow organizers and I set out with the goal of creating a dialogue around race, science, medicine and social justice that would include participants from outside of academia. However, we found that given the often fraught, if not downright hostile, histories of universities in their surrounding communities (especially in Yale’s case), the very act of holding an event within university walls dissuaded many potential attendees from coming. Similarly, as students secluded within those university walls, we found ourselves ill equipped to reach out beyond them. Yale University has numerous officially sanctioned “community partnerships” and other initiatives that run through approved university channels at top levels of administration. But it doesn’t provide similar support to students who want to create ongoing relationships with non-Yale sanctioned community organizations and institutions in New Haven.

This realization of being ill equipped of course does not absolve us of our responsibility to forge these relationships on our own. We realized, for example, that while we circulated our call for papers outside of Yale through familiar and comfortable academic channels, we did not do enough legwork to distribute it through non-Yale channels around New Haven. Nor did we create a document legible to anyone not already steeped in the language of the discipline of history of science and medicine. What the realization of being ill-equipped did do, however, was to remind us that while the institution within which we operate gives us the privilege to host a conference (and pats us on the back for doing so) it also serves as barrier between us and the people we have claimed as part of our conversation.

We also recognized that even within the elite sphere of academia, not every university has the rich resources that we were able to muster to make “Critical Histories, Activist Futures” possible. Our History of Science and Medicine program has several knowledgeable and generous administrative professionals who helped us navigate room reservations and locate caterers. Our supportive faculty partners helped us access substantial sources of funding from across the university. Yale has a well-staffed Office on Disabilities that advised us on how to make our event as accessible as possible. Not every group of graduate students will be able to draw on such extensive resources when they want to organize a conference. While our funding did not stretch far enough to offer travel reimbursements to our participants (a feature that would have made our event more widely accessible), we were able to offer attendees free lodging with Yale graduate students, which, again, may not be possible in every academic community. We also did not think to have our conference materials translated into languages other than English, though we were reminded during the conference that the assumption that all academic events will be conducted in English excludes potential participants, and with them differing viewpoints and experiences.

During our conference lunchtime roundtable, “Deploying Scholarship as Activism,” our colleague Amanda Joyce Hall noted that activism should be understood not as a discrete activity but a daily and continuous set of practices. Seen through this lens, local arrangements for a conference moves from being a list of boring grunt work to a potential site of scholarly activism, in that it has the potential to help carve out a more inclusive, more accessible, more comfortable space even within an environment that has often been unwelcoming and aggressive to many. At the same time, it is important to realize that thoughtful local arrangements alone can go only so far towards this goal. Throughout the conference we heard from student attendees – medical students especially – who felt that the “diversity training sessions” they attended at the beginning of each academic year were an example of university administrators only ticking a box; attempting to solve a pervasive structural problem by following a short list of concrete steps rather than attentively studying and addressing underlying issues. Similarly, hosting a truly inclusive and welcoming conference will require radically re-thinking why and where conferences are held, and whom they are intended to benefit. The simple process of retrospectively reviewing our local arrangements planning and its shortcomings makes the need for this re-thinking wildly obvious.

Coda: My fellow organizers and I discussed the potential for “Critical Histories, Activist Futures” to become a model for graduate student-organized conferences on the theme of justice in history of science and medicine, a model that could be replicated at different universities year after year (in the spirit of the Joint Atlantic Seminars for the History of Medicine and for the History of Biology). With this vision in mind my colleague Chelsea Blink compiled and edited a practical guide for anyone who would like to organize a similar conference, based on reflections from students who helped to organize “Critical Histories, Activist Futures.” If you would be interested in accessing this document, please reach out to me via e-mail.

Sarah M. Pickman is a Ph.D. student in the Program in History of Science and Medicine at Yale University. Her research examines the material culture of exploration and scientific expeditions and the construction of the “extreme environment,” particularly in the Arctic and Antarctica.

Critical Histories, Activist Futures” is a series edited by Tess Lanzarotta and Sarah M. Pickman.

Critical Histories, Activist Futures: Science, Medicine and Racial Violence by Sarah Pickman

11 Septembre 2017 - 8:23pm

A Reframed (and Reflexive) Conference Report

Organized and Edited by Tess Lanzarotta and Sarah M. Pickman

 

After a conference ends – after the last paper coffee cup has been tossed into the trash, after the adaptor cable has been disconnected from the podium laptop, after the speakers have rushed out to catch trains and flights homeward – what then? What tangible reminders survive from the days of presentations? An individual participant may have e-mails from new professional contacts and several notebook pages filled with notes hastily jotted during the talks. Fortunate conference organizers may find some funding and support to produce an edited volume of the papers. These texts will go some way to preserving the content of the conference talks. But they will not capture all of the ideas and responses generated over the course of those few days. What about the insights that arose from conversations around the coffee table, over lunch, or the bar afterwards? Or the experiences gained planning the conference or reviewing it weeks later? Where will they all go?

This series is our attempt to capture some of the insights, suggestions, critiques and experiences from a conference entitled “Critical Histories, Activist Futures: Science, Medicine and Racial Violence,” which was held at Yale University on February 24 and 25, 2017. The conference was conceived of by the History, Science, and Justice Collective (HSJC), a group of graduate students in Yale’s Program in History of Science and Medicine working towards a more just history of science. With the CFP these students asked for submissions that not only discussed historical cases of past injustices, but would also create starting points for historically informed debates about current forms of injustice and violence, including the inequities we see in the academic field of history of science and medicine. Part of the aim of the conference was to be reflexive about our own position as graduate students, especially graduate students at an elite private university in a majority-white field, in taking on this kind of work. The panels that ultimately comprised the final program reflected a variety of engagements with these themes, presented by graduate students, faculty, health practitioners and community organizers. Topics ranged from the labor politics of the academy, to community research partnerships, to science pedagogy, to conceptual issues such as which audiences scholarship reaches and what counts as violence in historical inquiry. A lunchtime session on “Deploying Scholarship as Activism” drew the speakers and the audience – which included a wide swath of undergraduate, graduate and professional students from inside and outside of Yale – together to discuss concrete ideas for what activist-minded scholarship could look like.

After the conference ended, my colleague Tess Lanzarotta and I, as two of the core organizers of “Critical Histories, Activist Futures,” invited some of the scholars who participated to contribute to this “reframed conference report” for Somatosphere. We wanted to give them a chance to put down in writing the conversations we had with them and the ideas they expressed during those in-between times at the conference outside of the formal paper presentations. Specifically, we asked them to write about the issues from their presentations that they find to be most pressing, as well as to reflect on the personal stakes they have in their work and how they see their own research and role in the academy in relation to the conference’s themes of the history of science and medicine, race, violence, equity and justice. In short, we imagined this series for Somatosphere as a way to record the self-reflexive thoughts raised during the conference that could not be captured by the typical academic paper presentation – or by most other forms of academic writing. We hope that these contributions from the “Critical Histories” participants, as well as several of the organizers, can be things for you to think with during your own in-between times.

Sarah M. Pickman is a Ph.D. student in the Program in History of Science and Medicine at Yale University. Her research examines the material culture of exploration and scientific expeditions and the construction of the “extreme environment,” particularly in the Arctic and Antarctica.

Critical Histories, Activist Futures” is a series edited by Tess Lanzarotta and Sarah M. Pickman.

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

8 Septembre 2017 - 10:57pm

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier. While Hawthorne’s story is somewhat overdetermined by the stark play with both sin and death of the Christian allegories that provided his model, it offers a striking allegorical figuration of human biological plasticity, and its relation to both mores and environments, which anticipates and perhaps even reshapes our current thinking on the ethics of experimentation.

 

Artificial Beings and Human Potential

This story’s allegorical features and its themes of scientific knowledge, experimentation, and ethical responsibility grant it a generic and topical affinity with science fiction. The Wesleyan Anthology of Science Fiction (Evans et al. 2010) includes “Rappaccini’s Daughter” as its earliest story, categorizing it with other stories about “Artificial/Posthuman Lifeforms.” Meanwhile, it was first published in 1844, the same year as Edgar Allen Poe’s “The Balloon-Hoax,” another key forerunner of science fiction (as Matthew Wolf-Meyer points out in his introduction to this series). By contrast with “The Balloon-Hoax,” however, which treats as-yet impossible technological heroics as-if they were tangible, present actualities, Hawthorne’s story can be seen as a forerunner of another path for speculative fiction: he builds a self-contained textual world, not an illusionistically referential one, an artificial atmosphere of romance in which to test the murky moral and political parameters of a newly-powerful regime of knowledge, and in which to try to define some real, present political limits to the authority of science with its capacity both to heal and to harm (on Hawthorne’s adoption of romantic literary modes as a means of commentary upon and engagement with the American “reality of [his] present,” see Bell 2005: 17; on his relation to the scientific innovations of his day, see Anastasaki 2011).

At the outset, it is important to note that “Rappaccini’s Daughter” is only one—though perhaps the best, as it was in the judgment of Henry James (1879)—of a suite of Hawthorn’s “tales” that all feature experiments and cold, disinterested observers (the collection The Celestial Railroad includes all the stories discussed here, and I cite throughout from this volume). Together, these stories can easily be read to point at the moral dangers of meddling with natural processes, whether the basic animal course of life and growth or the natural laws that govern human intercourse. For example, in “Dr. Heidegger’s Experiment” (first published in 1837), a magi invites his friends to sip an elixir that he claims is water from the true Fountain of Youth of explorer’s legends, and yet he does not partake himself and instead sits by observing their increasing folly (as they become youthful and amorous again) and their disillusion as the effects wear off. In “The Birthmark” (1843), a devoted husband exerts all the powers of his science to remove a birthmark from his wife’s cheek, in order to consummate the perfection that her face almost achieves but for the blemish (which, of course, in other estimations heightens rather than mars her beauty). Although his treatments are successful in their narrow objective of removing the birthmark, his wife dies in her submission to them, leaving her a perfect, lifeless object. On the way to this denouement, the wife accepts her husband’s revulsion, staring at herself in mirrors and coming, ultimately, to prefer death at his hands to living on with her own natural imperfection.

This last story also includes one of Hawthorne’s most explicit descriptions of the moral to be drawn from such tales of arrogant scientists. He writes that medical science’s dealings with nature, “our great creative Mother,” are limited by nature’s own rights over life: “She permits us, indeed, to mar, but seldom to mend, and, like a jealous patentee, on no account to make” (224). In a later story, “Ethan Brand” (1851) Hawthorne expands this natural limitation as a moral principle, and has the protagonist declaim against the “sin of an intellect that has triumphed over the sense of brotherhood with man and reverence to god, and sacrificed everything to its own mighty claims!” (302).

From the beginning of the tale, “Rappaccini’s Daughter” seems to be setting up a similar moral, somewhere between the narrowly legalistic notions of ownership and propriety rights of the former and the transcendent ethical obligation of the latter. Before getting into how it subverts these expectations, let me summarize the story, and highlight its overt moral intentions.

 

In The Scientist’s Garden

The story of “Rappaccini’s Daughter” begins with all the right trappings of romance: it takes place in Italy, in an indeterminate past, and features a young adventurer. Giovanni, a young man of great personal beauty, arrives in Padua to begin medical studies, and finds himself in lodgings overlooking a garden that belongs to the great scientist Rappaccini. From his window, Giovanni observes the scientist—an old man, whose face “could never have expressed much warmth of heart”—and his beautiful daughter, Beatrice, tending their strange and fascinating plants with, respectively, caution and ardor. Rappaccini inspects the plants with “intentness” and “distrust,” masking his face from the fragrance of the flowers, while Beatrice plucks the blooms and holds them close, appearing to Giovanni almost like a sister to the most splendid of the plants in the garden, which grows in a shattered, but still working, classical fountain (242-46).

Over the next few days, Giovanni watches Beatrice from his window and observes that the plants she tends and even her very presence seem to have a fatal effect on the insects and small creatures in the garden. In search of more knowledge about this strangely attractive woman and her relations both paternal and botanical, Giovanni visits his tutor Professor Baglioni, who tells him that Rappaccini is indeed a great scientist, but that there are “certain grave objections to his professional character [. . .]–that he cares infinitely more for science than for mankind.” Rappaccini is notorious for dangerous experiments with poisonous plants, Baglioni warns, and his daughter, too, has been taught great knowledge of deadly poisons (247). We readers learn, at this point, that Baglioni and Rappaccini are long-time rivals, and disagree over fundamentals of theory, but Giovanni remains ignorant of this relationship between them. Concerned by Giovanni’s growing fascination with his rival, Baglioni vows to use all the “arcana of [his] medical science” to preserve his young charge from danger.

Upon his return to his rooms, Giovanni is once again drawn to his window. Beatrice sees him and is, in turn, enraptured by his beauty. Giovanni throws a fresh bouquet of flowers that is on his desk to Beatrice as a tribute. As she quickly turns away and retreats inside he thinks he sees his gift withering in her very hands. Giovanni is left in doubt, and pursues a long and fevered internal debate about what he has seen, and what this makes him feel: “It was not love, although her rich beauty was a madness to him; nor horror, even while he fancied her spirit to be imbued with the same baneful essence that seemed to pervade her physical frame; but a wild offspring of both love and horror.” Hawthorne’s narrator editorializes here: “Blessed are all simple emotions, be they dark or bright! It is the lurid intermixture of the two that produces the illuminating blaze of the infernal regions” (253).

Tortured by his doubt and desire, Giovanni accepts an invitation from his landlady to be shown—for a price—a hidden entrance to Rappaccini’s garden. Upon gaining entry to the garden, Giovanni cannot but “critically” inspect the plants there. They are all “fierce, passionate, and even unnatural,” and appear to be the product of an artificial “commixture and, as it were, adultery of various vegetable species” such that they are no longer “God’s making, but the dreadful offspring of man’s depraved fancy, glowing only with an evil mockery of beauty” (257-58). The text says it plainly: “They were probably the result of an experiment.”

But Giovanni is interrupted in his speculations, once again, by Beatrice and her beauty, and an idyll follows of strangely bounded love. Giovanni and Beatrice now meet daily in the garden, but never touch and never kiss, and she warns him away from the great purple plant in the fountain at the center of the garden. Yet her concern for him only cements their bond. Hawthorne describes Giovanni’s thoughts, reflecting on their encounters, as simply this: “She was human,” after all (261).

Of course, like all idylls, this one cannot last. Giovanni feels himself transformed by his love of Beatrice, emboldened to be close to her. But then the awful truth is finally revealed by a visit from Baglioni, who says he has been reading “classic authors” and stumbled upon the story of a “Indian princess” who was turned by her father into a poisonous virago and given as a gift to the conqueror Alexander the Great, in order to destroy her father’s enemy by seducing, infecting, and thus killing him (264). Giovanni is forced to rethink all that has transpired: Beatrice has endeavored to protect him from her father’s poisonous plants, to be sure, but has also kept herself apart from him, chastely. What if the daughter was herself a subject of her father’s science and carried his synthetic poisons within her?

Baglioni, happily, says he has devised an antidote that may yet save Beatrice from her father’s cold and scientific experimentation upon his own daughter. He sends Giovanni to the garden to administer the antidote, and reflects to himself as he gazes down from the young man’s room “We will thwart Rappaccini yet . . . a vile empiric . . . not to be tolerated by those who respect the good old rules of the medical profession” (267).

Giovanni is as yet unconvinced, and resolves to “institute some decisive test” before coming to a final judgment about Beatrice, whether she is as she appears—pure and virtuous—or rather the source of terrible and fatal contagion, and perhaps even enmeshed in some plot with her father against him. He pauses to satisfy himself, by inspecting his own beautiful face in a mirror, that at least he himself has not yet been infected by the poison she may contain. His beauty, he is happy to see, is still intact. To make a further, final test he breathes upon a spider, and to his horror it promptly dies.

Giovanni rushes into the garden and violently accuses Beatrice of evil intentions and schemes to infect him with her vileness, pressing her to explain his own now fatal breath. Beatrice reveals to him that the hopes and fears he has struggled with are all true, but not as he expected: Beatrice is human, indeed, and loves Giovanni, and yet is also the product of her father’s craft and innately poisonous, like the plants in his garden. She says to Giovanni, “at the hour when I first drew breath, this plant sprang from the soil, the offspring of his science, his intellect, while I was but his earthly child. . . . I grew up and blossomed with the plant and was nourished with its breath. It was my sister, and I loved it with a human affection” (270-71). But, she continues, “Alas! . . . There was an awful doom, . . . the effect of my father’s fatal love of science, which estranged me from all society.”

Giovanni is thunderstruck, and rages against her for causing his infection with this terrible stuff: “Accursed one! . . . Poisonous thing! . . . Thou hast blasted me!” Beatrice protests that it is her father’s science that is to blame, and he repents and presses Baglioni’s antidote upon her, hoping thus to lead them both back to “ordinary nature.” But the balance between them has shifted. For her part, Beatrice knows how deeply the poison runs in her, and that Baglioni’s antidote will likely kill her; while Hawthorne’s narrator tells us that Giovanni’s hopes are now in vain, though he “did not know it,” “after such deep love had been so bitterly wronged as was Beatrice’s love by Giovanni’s blighting words!” (273).

Stung by Giovanni’s accusations and doubt, Beatrice makes to drink the antidote down, but her father appears and admonishes them not to spurn the gift he has given them both. He explains that Giovanni is now impervious to the poison, and that she and he can pursue their lives together. “My precious daughter,” he says, “thou art no longer lonely in the world.” Moreover, both now stand apart from common men and women. “Pass on, then, through the world, most dear to one another and dreadful to all besides!” Beatrice rejects this option of joining society only to be feared, not loved, as in fact the substance of her “doom” and drinks the antidote, dying at the feet of both her lover, Giovanni, who has so misunderstood her and her fate, and her father, who has wrought it all. In an ambiguous twist, as she dies Beatrice accuses Giovanni of the greatest culpability for her death. “Farewell, Giovanni! Thy words of hatred are like lead within my heart; but they, too, will fall away as I ascend. Oh, was there not, from the first, more poison in thy nature than in mine?” (274).

There is one further, final note to be struck: the source of the truly poisonous experimental product that finally takes Beatrice from the world is not there in the garden with them—it is Baglioni with his “antidote,” who exults over the scene of her death from Giovanni’s window above, calling out “Rappaccini! Rappaccini! and this is the upshot of your experiment!” (275). And on this cry, the story ends.

In many respects, “Rappaccini’s Daughter” neatly conforms to the somewhat “stiff and mechanical” (James’s phrase) allegorical template of Hawthorne’s other stories: Rappaccini is typecast from the first as the “cold observer” who cares more for knowledge than for his own daughter; Giovanni’s hope of a cure for Beatrice and his naïve conviction in his own invulnerability conspire to cause the ruin of his patient/beloved; Baglioni’s professional jealousy and (perhaps) limited skill combine in his unlicensed admixture of poisons in his so-called antidote. Overall, it is the “rules of the medical profession” that seem ultimately to be upheld by the narrative. And yet in the dense last few pages, the allegory doubles back on itself and the apparent exemplars of disinterested, albeit differently skilled, science (Rappaccini, Baglioni) or overemotional care (Giovanni) are shown to share in the others’ apparent motivations, and to be equally compromised in their intermingling of love, knowledge, and self-interest (recall, perhaps, what Hawthorne says about the simple emotions and the terrible power of their more complex admixtures).

In his final speech to his daughter Rappaccini asks her if it would have been preferable to be only a “weak woman, exposed to all evil and capable of none” (274). His experimentation upon her is, at last, motived not by a disinterested love of science but rather by an all-too interested love of power, a desire to make his offspring “as terrible as . . . beautiful.” Subsequently, to deal with the consequences of this, he expands his experiment to include her lover, Giovanni. Throughout, paternal love—not soulless unconcern for humanity—motivates his experimentation. There are echoes, here, perhaps of debates over the extremities to which experimental therapies and even simple life support may be taken, in pursuit of more life for our loved ones.

Baglioni is also, in addition to being a professor of medical science, a “bad” father and a transgressor of ethical limits: a surrogate father to Giovanni (he protests throughout that he is a dear old friend of Giovanni’s father), he too engages in unlicensed experimentation on human subjects (as it were), and ultimately his actions are just as “poisonous” as Rappaccini’s, if not more so. Whether he acts in full knowledge that his antidote will kill Beatrice or not, he justifies his own moral breaches by reference to Rappaccini’s own lack of respect for the rules of their shared profession. Thus, while Rappaccini’s “greatness” allows him to carve out his own private moral terrain for experimentation, Baglioni’s envious (and mediocre) invocation of the “rules” ends up licensing his own morally-debased experimentation; he masks his deep and unacknowledged self-interest with high claims on behalf an abstracted humanity and appeals to professional rules.

 

The Broken Fountain

Rappaccini and Baglioni both offer instructively compromised moral figures, particularly in relation to contemporary anthropological work in bioethics. A significant body of anthropological work has shown how certain bodies are made “available” to experimentation not in breach of, but rather through the negotiation of ethical boundaries, which latter are themselves shaped by policy techniques that allow them to be redrawn in the name of pressing need, or in pragmatic recognition of disparate regimes of value and fundamental laws in different places. I am thinking, here, of Lawrence Cohen’s theorization of “bioavailability” in relation to Indian kidney donation, Sheila Jasanoff’s examination of “narrative frames” that shape bioethical regimes, and the kind of “ethical variability” that Adriana Petryna has tracked across the global medical trials industry.

But such direct, ethical relevance may conceal another aspect of the allegory here, one which refers us to a more fundamental inquiry into human ontology and its biological and social plasticity. This is best approached by returning briefly to the beginning, and appreciating the textual play which Hawthorne is engaging in, especially in relation to his other moral fables.

The story, in fact, comes with a short preface that is often not reproduced when it is anthologized as a pedagogical text (it is left out in the Wesleyan Anthology, for instance). Subtitling his story “From the Works of Aubépine,” Hawthorne offers it as a mere translation of a typical tale by a minor French moralist. This prolific author, Aubépine, is said to have attracted less attention than is perhaps his due because of his “inveterate love of allegory,” which “is apt to . . . steal away the human warmth out of his conceptions” (239). However, after a “somewhat wearisome perusal” of his “startling catalogue of volumes,” Hawthorne deigns to present one story as worthy of attention, especially because of its previous publication in a French journal that has been foremost in the defense of “liberal principles” (241).

This is, of course, a literary frame and not meant to be taken sincerely: Aubépine’s putative works are just French renderings of the titles of Hawthorne’s own previous publications, and “aubépine” is the French name for the hawthorn bush. Hawthorne’s mention of the French journal is an elaborate compliment to his own publisher. Yet the preface, with its critical opposition of allegory and realism, fable and moral utility, also serves to signal Hawthorne’s own serious allegorical purposes: both to sequester the imaginative world which follows (as itself a kind of experimental garden) and to unleash contemporary speculation beyond its rather narrow bounds.

The literary critic Paul de Man argued some years ago that in Romantic literature allegorical modes were pervasively dismissed as outmoded (as they are by Hawthorne’s preface) and yet routinely, even anxiously cited and deployed—reappearing, for instance, in the gardens of Rousseau’s Nouvelle Heloïse, which de Man shows were conscious echoes of the allegorical garden of the Roman de la Rose. This remaking of allegory by Romantic authors served a wider project of revealing the “authentically temporal” predicament of the human being. On this account of literary history, if allegory seems to present—like science fiction— “an ideal time that is never here and now but always a past or an endless future” (de Man 1983: 226), it also serves as a means to gauge and measure ongoing and present predicaments of the subject beset by forces he or she does not control. These are, in the Romantic period at least, historical forces that allegory can help figure (and, literarily, control) as ethical maturation or “social” progress. The important point to be drawn from this is that a self-consciously deployed allegory does not simply stage moralized oppositions between natural and artificial, pure and corrupted, rightfully owned and wrongfully appropriated, self-same and differentiated. It constructs a textual world that provides a vantage point from which to judge the temporal reworking of such oppositions, and their complex combination in the course of ongoing historical being.

Indeed, unlike Hawthorne’s other moral fables, “Rappaccini’s Daughter” fails to point us toward clear and internally-articulated lessons about the human dangers of a narrowly intellectual search for perfect knowledge, or the risky quest to possess perfect beauty. By contrast, from preface to conclusion, it works to posit a more complex relation between knowledge and perfection, one in which a loss of moral perfection and of ontological closure (of “the” human, or the individual) is the cost of true knowledge.

The raising of the allegorical stakes, as it were, and the complexity of the resolution, are indicated, first, by the fact that both Beatrice and Giovanni are consistently described as surpassingly, inhumanly beautiful. Neither searches for perfect beauty (nor does either lose it), but both already possess it. This sets them off from their fictive world—like classical allegorical figures, distinguished by their exemplary function not by their narrative relations. Giovanni is explicitly said to have a “remarkable beauty of person,” to possess “Grecian, rather than Italian” features, and he is allowed to look upon his own image in a mirror and appraise his own beauty with a certain amount of “vanity” (which will be his downfall) but no discernable irony (that is, we are not invited to doubt the beauty he sees). Beatrice’s beauty serves, naturally, to motivate the narrative, but it is equally unquestioned, if more often evoked through metonymy than straight description. Her “silken garments,” her voice “like a gush of music,” and her fine manner all attest to her beauty; meanwhile, “all the young men in Padua are wild about [her]” Baglioni says at one point, “though not half a dozen have ever had the good hap to see her face” (248-49).

Second, in their physical distinction and sequestration from ordinary social worlds, both of these characters are in many ways like the cold observers of Hawthorne’s other stories of disinterested experimentation. But there is a key difference: they are not impervious observers. Both are experimented upon, infected from outside, and transformed unwittingly, breaking the bounds of ordinary human artifice (as the fountain in the center of the garden is broken, or ruined), in order to become something new, beyond the common order of things. Importantly, neither changes in any natural or social ways in the course of the story (they do not age, lose their charms, or gain knowledge) but they are transformed. Beatrice and Giovanni are both opposed to “ordinary nature” and its processes in ways that make them into allegorical figures of human malleability, plasticity, and indeed vulnerability. In the last scene, both are emotionally labile as well as being biologically plastic, and importantly this vulnerability also has ethical implications: it demands exigent decisions about what counts as love or care, and the form of life one can sustain.

As with the first, bioethical, reading, there is another twist here, one which brings the problematic interrelation of knowledge with the pursuit of perfection most clearly into view. More interesting than speculation about whether Beatrice is a virago or a martyr, is the fact that she is acutely self-aware and alert to her environment. She explicitly speaks of her vulnerability to the smells and strange appearance of the flowers she tends, and disavows (perhaps cannily) any scientific knowledge of their properties. Beatrice stands for a form of self-knowledge with its own moral beauty, since it is more intensely human, but that is also what makes her uniquely vulnerable to death (there is no implication I think, at the end, that Giovanni will follow her in this act). That is, when she fully realizes the artificial and unnatural source of her own terrible perfection, and the as-it-were asocial causes and consequences of it, she chooses death in preference to maintaining an elevated and separated status here below. The wife in “The Birthmark” provides a partial forerunner to this resolution: by accepting death, these women achieve the perfection and plenitude of self which is denied to them as mere mortals, and yet this is the final sign of their true humanity, as opposed to the real artificiality of those who care for nothing natural (including death) and exult in human capability alone.

The beautiful and morally flawed artificial being, potentially perfectible and hence potentially all-powerful, is finally redeemed not by her natural imperfection but by her knowledgeable act of self-limitation, one which in fact depends upon her biological plasticity and vulnerability—it is an antidote to the poison that she has become that poisons her, after all. What Beatrice is able to do when she seizes this antidote and uses to act upon her own artificially-made substance is something that is finally beyond the most perfect being imaginable, whose cruel beauty could not encompass self-knowledge (recognition of its own destructiveness) or self-limitation, as any number of android belle dames sans merci in science fiction might attest. This reading also makes sense of Giovanni’s last, lingering gaze at himself in his mirror before he discovers—through an external test—that he, too, is infused by poison: his vain self-love and conviction of immunity provides the antitype to the vulnerable, redemptive figure of Beatrice. Far from thinking herself complete and self-sufficient (the image in the mirror), Beatrice understands her entanglement with the (limited) environment that is both herself and her other (recall her all-important explanation to Giovanni, that the plant in the garden has grown with her, and is her sister, and that she loved it with a “human love”).

In his literary preface, his framing device, Hawthorne is right to say of Aubépine’s story that there is little human in it. These characters are not so much human as they are sublime creations who serve an allegorical function in an all-too mechanical plot. But Beatrice becomes, surprisingly, a tragic heroine and intensely human in the end, since she comes to her end through self-knowledge, and most importantly knowledge of her own transformations and transformability. None of the other characters do.

Read in full, from framing preface to tragic conclusion, neither nature nor moral rules remain unchallenged or unchanged in this story. Nature as the “jealous patentee” whom no human can approach is nowhere in evidence. Untinctured nature does not appear (save perhaps in the insects and cut flowers that Beatrice’s mere touch destroys). The only substantial sign of such a natural nature, unspoiled and pristine, lies in the Edenic immediacy and self-involvement of the two central figures’ initial ways of living. But if this is destroyed in the end it is not because of cold, disinterested knowledge but because of the necessary action of the most compromised, most poisoned figure of all. This is the “upshot” of the experiments at play here: it is not the experimenter who will “stop at nothing” (as Baglioni says of Rappaccini, with some dramatic irony) who must be brought within ethical limits, nor nature “herself” who will rebel against knowledge, but rather the process of experimentation itself that must be limited from within, by the experimental subject reckoning with her own, ongoing, and artificial creation.

Ultimately, this allegory, with all its literary tricks and framing devices, allows us a richer sense of the kinds of moral sense, and the self-knowledge, that we may need to govern regimes of experimentation in the ongoing present. Moreover, with all its ambiguous orchestration of moral tropes and allegorical figures, “Rappaccini’s Daughter” encourages one to approach these questions not by accepting static oppositions between the (poisonous) fruits of knowledge and (ethical) obligations to protect nature or society, but more rigorously through interrogation of the aesthetic and formal qualities of the practices—including practices of reading and storytelling—through which we think (and live) through such oppositions in time.

 

Works cited

Anastasaki, Elena. 2011. “Leaps and bounds: Hawthorne’s strategies of poetic economy.” Connotations 21 (2-3): 177-197. Online: http://www.connotations.uni-tuebingen.de/anastasaki02123.htm

Bell, Millicent, ed. 2005. Hawthorne and the Real: Bicentennial Essays. Columbus, OH: Ohio State University Press.

De Man, Paul. 1983. “The Rhetoric of Temporality.” In Blindness and Insight

Evans, Arthur B., Istvan Csicsery-Ronay Jr., Joan Gordon, Veronica Hollinger, Rob Latham, and Carol McGuirk, eds. 2010. The Wesleyan Anthology of Science Fiction. Middletown, Conn.: Wesleyan University Press.

Hawthorne, Nathaniel. 2006. The Celestial Railroad and other stories. New York: Signet Classics.

James, Henry. 1879. Hawthorne. London: Macmillan. Online document: http://xroads.virginia.edu/~drbr/james_1.html

 

Leo Coleman is Associate Professor of Anthropology at Hunter College, City University of New York. His book A Moral Technology: Electrification as Political Ritual in New Delhi is out now, from Cornell University Press. leo.coleman@hunter.cuny.edu

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

Web Roundup: Opioids as a National Emergency by Katherine Warren

6 Septembre 2017 - 4:27pm

After several years in the headlines, the U.S. opioid crisis has been in the news this summer as the federal government debates its status as a national emergency. On July 31st, the President’s Commission on Combating Drug Addiction and the Opioid Crisis, led by New Jersey Governor Chris Christie, released its interim report on the state of the U.S. opioid crisis. As their “first and most urgent recommendation” for President Trump, the members of the Commission urged him to “[d]eclare a national emergency under either the Public Health Service Act or the Stafford Act.”

The report emerged just as federal officials published a widely cited study showing that 91.8 million (37.8%) U.S. adults had used prescription opioids in 2015, 11.5 million (4.7%) had misused them, and 1.9 million (0.8%) had an opioid use disorder. Nearly half (40.8%) of the individuals who had misused opioids had obtained them for free from family or friends. News reports on the study also declared that “[o]pioid abuse started as a rural epidemic” of “hillbilly heroin” but has now become a “national one.”

President Trump did not initially declare a national opioid emergency, vowing instead in a briefing on August 8th to focus on prevention, increased law enforcement and drug-related prosecutions, and more aggressive policing of U.S. borders. By August 10th, after significant criticism, Trump told reporters, “We’re going to draw it up and we’re going to make it a national emergency.” As of September 1st, the Trump administration had yet to take the legal steps to formally declare a national emergency around the opioid crisis.

While the federal administration has debated the appropriate response, there have been more alarming statistics and headlines related to the opioid crisis this August. The National Center for Health Statistics found overdose deaths rose sharply in the first three-quarters of 2016 compared to the same nine months in 2015. Hospitals saw a 64% increase in opioid-related inpatient stays and a doubling of emergency room visits between 2005 and 2014, while other research suggests hospitals’ interventions after non-fatal overdoses were inadequate and increasingly expensive. One study found a seven-fold increase in the number of fatally injured drivers who tested positive for prescription opioids since 1995, while another found that more than two-thirds of surgery patients end up with unused prescription opioids.

These stories of the “opioid epidemic” make headlines daily. Addiction—and opioids in particular—even played an unusually public role in the 2016 presidential election when Politico described the U.S. Republican presidential candidates as “hooked on addiction stories.” Governor Chris Christie spoke tearfully of a nicotine-addicted mother and a classmate’s prescription drug overdose. Jeb Bush was candid about daughter Noelle’s addiction and drug-related arrest during his time as Florida’s governor. Senator Ted Cruz lost a half-sister to “the demons of addiction and anger,” while Carly Fiorina lost her step-daughter to overdose in 2009. Donald Trump’s brother, Freddy Trump, died of alcohol-related causes at age 43.

Epidemics have played a potent symbolic function in U.S. history. From opium to crack cocaine, the moral panics that ensue in drug-related epidemics suggest that a certain social threat could infringe upon a society’s fundamental values. While the term, “epidemic,” commands great authority, it is a state often born more of sentiment than of science. The declaration of a national emergency, however, can move U.S. resources in greater numbers and with greater expediency. A national emergency could allow for special regulatory powers, including the removal of restrictions on methadone and buprenorphine prescribing as well as the widespread dispensing of the overdose reversal drug, naloxone, without a prescription.

These conversations beg the question of what and when a crisis becomes both “national” and “emergent.” In the public imagination, the current opioid crisis began as a “rural epidemic,” one often implicitly or explicitly coded as white. Reminiscent of the differential approaches to cocaine and its crack cocaine equivalent, the current panic over opioids has patterned our public health and policing responses in ways that substantiate or naturalize addiction across racial and geographic lines. This has not gone unnoticed. Dahleen Glanton wrote about the lack of compassion in the crack cocaine crisis of the 1980s and its impact on the “opioid epidemic” today. Last year, Professor Ekow Yankah penned a New York Times op-ed on the about-face of American drug policy “when addiction has a white face.” As Yankah writes, “White heroin addicts get overdose treatment, rehabilitation and reincorporation, a system that will be there for them again and again and again. Black drug users got jail cells and ‘Just Say No.’”

Compassion and awareness are critical pieces of addressing the growing opioid crisis in the U.S. today. This race-based double standard, however, allows for public compassion for white opioid users while Attorney General Jeff Sessions continues to escalate the war on drugs in many communities of color. As the national response to curb opioid addiction and overdose mounts, it is worth considering how race and class shape our epidemic declarations and emergency responses and which drugs and drug users are deemed eligible for such compassion and intervention.

 

More links of interest:

In the Journals – August 2017 by Livia Garofalo

2 Septembre 2017 - 1:16pm

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

 

International Journal of Social Psychiatry

‘I have potential’: Experiences of recovery in the individual placement and support intervention

Iben Gammelgaard, Thomas N Christensen, Lene F Eplov, Sofie B Jensen, Elsebeth Stenager, Kirsten S Petersen

Background: The individual placement and support (IPS) intervention supports persons with severe mental illness in achieving competitive employment. Although the IPS intervention is labelled a recovery-oriented intervention, little is known about how participants experience IPS to influence recovery. The aim was to investigate how IPS and employment influence recovery in persons with severe mental illness. Material: A qualitative phenomenological hermeneutic study of experiences of 12 participants in IPS. Discussion and conclusion: IPS and competitive work have an impact on personal recovery, may influence work functioning and decrease depressive symptoms, but do not seem to have an impact on psychotic symptoms.

Rights of people with mental disorders: Realities in healthcare facilities in Tunisia

Mayssa Rekhis, Abir Ben Hamouda, Sami Ouanes, Rym Rafrafi

Background: Mental disorders have been associated worldwide with human rights’ violations. Controversially, many occur in mental health facilities. Aim: This work aimed to assess the rights of people with mental disorders in healthcare facilities in Tunisia. Methods: A cross-sectional study, using the World Health Organization (WHO) quality-rights toolkit, assessed the human rights levels of achievement in Elrazi Hospital, the only psychiatric hospital in Tunisia, in comparison with the National Institute of Nutrition (NIN). The framework was the Convention on the Rights of Persons with Disabilities (CRPD). The assessment was carried through observation, documentation review, and interviews with service users, staff, and family members. The sample was composed of 113 interviewees. Results: In Elrazi Hospital, three out of the five evaluated rights were assessed as only initiated: the right to an adequate standard of living, to exercise legal capacity and to be free from inhuman treatment. By comparison, these rights were partially achieved in the NIN. The right to enjoyment of the highest attainable standard of health was partially achieved and the right to live independently and to be included in the community was not even initiated. These last two rights were at the same level of achievement in the NIN. Conclusion: Significant improvements are needed to adapt the practice in Elrazi Hospital to comply with human rights, especially since the achievement level of these rights is lower than in a non-psychiatric hospital. Our study emphasizes the importance of spreading the CRPD as a standardized framework.

Social class and mental distress in Greek urban communities during the period of economic recession

Anastasia Zissi and George Stalidis

Background: This study draws on old and well-established evidence that economic change, and especially recession, affects people’s lives, behavior and mental health. Even though the literature is rich on the relationship between unemployment and mental distress, there is a renewed research interest on the link between socio-economic inequalities and psychological health. Aims: The study investigates the relationship of social class with mental distress during the hard times of persistent and severe economic crisis in Greece by conducting a comparative, community study in the country’s second largest city, Thessaloniki. Method: A face-to-face structured interview covering living conditions, life events, chronic stressors and coping strategies was employed to 300 residents of socio-economically contrasting neighborhood areas. Social class was operationalized by Erik Olin Wright’s social class position typology, based on ownership and control over productive assets. The method of multiple correspondence analysis (MCA) was also applied to analyze the collected data. Results: The results indicated that mental distress was significantly differentiated across social classes and in each residential area. Unemployed and unskilled workers were the most vulnerable groups in terms of psychological health. Chronic stress arose in this study as a risk factor for poor mental health outcomes and it was associated to low marital quality, intense economic burden and impoverished housing conditions. Conclusion: Those who face income loss, job loss and disability are at high risk for poverty and marginalization, suffering from greater psychological distress.

 

Social Science & Medicine

SPECIAL ISSUE SECTION: Austerity, Health and Wellbeing: Transnational Perspectives

Austerity and the embodiment of neoliberalism as ill-health: Towards a theory of biological sub-citizenship

Matthew Sparke

This article charts the diverse pathways through which austerity and other policy shifts associated with neoliberalism have come to be embodied globally in ill-health. It combines a review of research on these processes of embodiment with the development of a theory of the resulting forms of biological sub-citizenship. This theory builds on other studies that have already sought to complement and complicate the concept of biological citizenship with attention to the globally uneven experience and embodiment of bioinequalities. Focused on the unevenly embodied sequelae of austerity, the proceeding theorization of biological sub-citizenship is developed in three stages of review and conceptualization: 1) Biological sub-citizenship through exclusion and conditionalization; 2) Biological sub-citizenship through extraction and exploitation; and 3) Biological sub-citizenship through financialized experimentation. In conclusion the paper argues that the analysis of biological sub-citizenship needs to remain open-ended and relational in order to contribute to socially-searching work on the social determinants of health.

“Sharing One’s Destiny”: Effects of austerity on migrant health provisioning in the Mediterranean borderlands

Megan A.Carney

Italy has been on the frontlines of the European Union’s “migration crisis,” intercepting hundreds of thousands of migrants and asylum-seekers at sea and on its shores. Yet it has lacked adequate resources to ensure humane reception, as other forms of welfare state provisioning have also been rolled back through recent and ongoing austerity measures enforced by the EU and the IMF. While Italians face fewer employment opportunities, lower pensions, and higher taxes, migrants of precarious legal status and asylum-seekers struggle to navigate the weakened bureaucratic apparatus of the Italian state, including the health system. Drawing on ethnographic fieldwork conducted in the Italian provinces of Lazio and Sicily in early 2014 and 2016, this article documents the imbricated economic and health struggles of Italian citizens and noncitizens, and alludes to lived experiences of and community responses to economic austerity characterizing much of the Mediterranean borderlands. I argue that marginalization by the state of both citizens and noncitizens in this setting undergirds some of the local and community responses to economic austerity. Moreover, I suggest that contemporary struggles in this geopolitical context intersect in important ways with the repercussions of austerity legacies that have contributed to widespread displacement in neighboring regions and subsequent migration into the EU.

Producing a worthy illness: Personal crowdfunding amidst financial crisis

Lauren S. Berlinera and Nora J. Kenworthy

For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity–along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)–are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March–September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.

Narrating health and scarcity: Guyanese healthcare workers, development reformers, and sacrifice as solution from socialist to neoliberal governance

Alexis Walker

In oral history interviews, Guyanese healthcare workers emphasize continuity in public health governance throughout the late twentieth century, despite major shifts in broader systems of governance during this period. I argue that these healthcare workers’ recollections reflect long-term scarcities and the discourses through which both socialist politicians and neoliberal reformers have narrated them. I highlight the striking similarities in discourses of responsibility and efficiency advanced by socialist politicians in 1970s Guyana and by World Bank representatives designing the country’s market transition in the late 1980s, and the ways these discourses have played out in Guyana’s health system. Across diverging ideologies, politicians and administrators have promoted severe cost-control as the means to a more prosperous future, presenting short-term pains as necessary to creating new, better, leaner ways of life. In the health sector this has been enacted through a focus on self-help, and on nutrition as a tool available without funds dedicated for pharmaceuticals, advanced medical technologies, or a fully staffed public health system. I argue that across these periods Guyanese citizens have been offered a very similar recipe of ongoing sacrifice. I base my analysis on oral histories with forty-six healthcare workers conducted between 2013 and 2015 in Guyana in Regions 3, 4, 5, 9, and 10, as well as written records from World Bank and Guyanese national archives; I analyze official discourses as well as recollections and experiences of public health governance by those working in Guyana’s health system.

“How the other half live”: Lay perspectives on health inequalities in an age of austerity

Kayleigh Garthwaite and Clare Bambra

This paper examines how people living in two socially contrasting areas of Stockton on Tees, North East England experience, explain, and understand the stark health inequalities in their town. Participants displayed opinions that fluctuated between a variety of converging and contrasting explanations. Three years of ethnographic observation in both areas (2014–2017) generated explanations which initially focused closely on behavioural and individualised factors, whilst 118 qualitative interviews subsequently revealed more nuanced justifications, which prioritised more structural, material and psychosocial influences. Findings indicate that inequalities in healthcare, including access, the importance of judgemental attitudes, and perceived place stigma, would then be offered as explanations for the stark gap in spatial inequalities in the area. Notions of fatalism, linked to (a lack of) choice, control, and fear of the future, were common reasons given for inequalities across all participants. We conclude by arguing for a prioritisation of listening to, and working to understand, the experiences of communities experiencing the brunt of health inequalities; especially important at a time of austerity.

Austerity and its implications for immigrant health in France

Carolyn Sargent and Laurence Kotobi

The ongoing economic crisis in France increasingly has affected immigrant rights, including access to health care. Consistent with a 2014 League Against Cancer survey, we identify the ways in which sickness produces a “double penalty” for immigrants with serious illness. Immigrants with chronic illnesses such as cancer, diabetes, and other debilitating conditions divert vital funds from daily needs to deal with sickness and loss of work while at the same time national austerity measures shred the state’s traditional safety net of social services and support. We examine how immigrants strategize to manage financial exigencies, therapeutic itineraries and social relations in the face of these converging pressures. We base our findings on two studies related by this theme: an investigation of health inequalities in the Médoc region, in which 88 women, 44 of North African and Eastern European origin, were interviewed over a three-year period (2010–2013); and a three-year study (2014–2017) of West African immigrant women with breast cancer seeking treatment in the greater Paris region, 70 members of immigrant associations, and clinical personnel in three hospitals.

 

Social Studies of Science

Scientists as citizens and knowers in the detection of deforestation in the Amazon

Marko Monteiro, Raoni Rajão

This paper examines how scientists deal with tensions emerging from their role as providers of objective knowledge and as citizens concerned with how their research influences policy and politics in Brazil. This is accomplished through an ethnographic account of scientists using remote sensing technology, of their knowledge-making activities and of the broader socio-political controversies that permeate the detection of deforestation in the Amazon rainforest. Strategies for mitigating uncertainty are central aspects of the knowledge practices analyzed, bringing controversies ‘external’ to the laboratory ‘into’ the lab, making these boundaries conceptually problematic. In particular, the anticipation of alternative interpretations of rainforest cover is a crucial way that scientists bring the world into the lab, helping to shed light on how scientists, usually seen and analyzed as isolated, are in fact often in constant dialogue with the broader political controversies related to their work. These insights help question the idea that the monitoring of deforestation through remote sensing is a form of secluded research, drawing a more complex picture of the dual role of scientists as knowledge producers and concerned citizens.

Modernizing the flow of blood: Biomedical technicians, working knowledge and the transformation of Swedish blood centre practices

Boel Berner, Maria Björkman

The early 1980s saw a ‘paradigm change’ in how donated blood was handled and used by blood centres, hospitals and pharmaceutical companies. In Sweden, a five-year state-financed R&D programme initiated a swift modernization process, an alleged ‘revolution’ of existing blood centre practices. In this article, we use interviews and archival material to analyse the role of female biomedical technicians in this rapid technical and organizational change. In focus is their working knowledge, or savoir-faire, of blood, instruments and techniques. We give a detailed analysis of technicians’ embrained and embodied skills to create safety in blood and its representations, handle contingencies and invent new procedures and techniques. These transformations are analysed as sociomaterial entanglements, where the doing and undoing of gender, sociomaterial practices, hierarchies of authority and expertise, and emotions are intertwined.

 

Social Theory and Health

A tale of two diseases: Discourses on TB, HIV/AIDS and im/migrants and ethnic minorities in the United Kingdom

Penelope Scott, Hella von Unger, Dennis Odukoya

Ethnicity and migrant-related categories in health reporting constitute a discursive practice in knowledge production on infectious diseases such as TB and HIV/AIDS. These categories are bound up with the ascription of identities and are a product of unique socio-historical factors. We use a sociology of knowledge approach to discourse analysis (SKAD), to examine the categories used in TB and HIV/AIDS health reporting in the UK and the discourses on im/migrants, ethnic minorities and infectious disease in which they are embedded. The interpretative analysis shows that the ‘order of knowledge’ instituted by these discourses is historically contingent and that common interpretative patterns in the discourses are of im/migrants and ethnic minority groups as being ‘a risk’ and ‘at risk’ of infectious diseases. However, the dominance of these patterns varies according to the disease. While TB has consistently been constructed since the 1960s as a disease of immigration, with im/migrants and ethnic minorities being more of ‘a risk’ to the nation’s health, HIV/AIDS has been more explicitly linked to the new public health and notions of these groups’ vulnerability. We consider the implications of these discourses in relation to the current TB control strategy and the constitution of knowledge on TB/HIV co-infection.

 

Transcultural Psychiatry

Culture in la clínica: Evaluating the utility of the Cultural Formulation Interview (CFI) in a Mexican outpatient setting

Alyssa M. Ramírez Stege, Kristin Elizabeth Yarris

While the classification of psychiatric disorders has been critiqued for failing to adequately account for culture, the inclusion of the Cultural Formulation Interview (CFI) in the DSM-5 has been viewed as a promising development for the inclusion of cultural factors in diagnosis and treatment of mental illness. In this study, we assess the appropriateness, acceptability, and clinical utility of the CFI among outpatients in a Mexican psychiatric hospital. Our assessment included observations of psychiatric residents’ application of the CFI with 19 patients during routine outpatient visits, along with pre- and post-CFI interviews to determine providers’ and patients’ views of the CFI. The CFI was generally well received by providers and patients, viewed as a way of building trust and increasing providers’ understanding of contextual factors influencing mental illness, such as social support. However, the CFI questions specifically related to “culture” were of limited effect and both patients and providers did not view them as useful. We discuss implications for the clinical assessment of cultural factors influencing mental health and illness and for the incorporation of the CFI in Mexican clinical settings.

The bird dancer and the warrior king: Divergent lived experiences of Tourette syndrome in Bali 

Robert Lemelson, Annie Tucker

In the past two decades, ethnographic, epidemiological and interdisciplinary research has robustly established that culture is significant in determining the long-term outcomes of people with neurodevelopmental, neuropsychiatric and mood disorders. Yet these cultural factors are certainly not uniform across discrete individual experiences. Thus, in addition to illustrating meaningful differences for people with neuropsychiatric disorder between different cultures, ethnography should also help detail the variations within a culture. Different subjective experiences or outcomes are not solely due to biographical idiosyncrasies—rather, influential factors arising from the same culture can have different impacts on different people. When taking a holistic and intersectional perspective on lived experience, it is crucial to understand the interaction of these factors for people with neuropsychiatric disorders. This paper teases apart such interactions, utilizing comparative case studies of the disparate subjective experiences and illness trajectories of two Balinese people with Tourette syndrome who exhibit similar symptoms. Based on longitudinal person-centered ethnography integrating clinical, psychological, and visual anthropology, this intersectional approach goes beyond symptom interpretation and treatment modalities to identify gendered embodiment and marital practices as influenced by caste to be significant determinants in subjective experience and long-term outcome.

 

Signs

Other Mothers,” Migration, and a Transnational Nurturing Nexus

Alexia Bloch

Based on thirteen months of nonconsecutive ethnographic fieldwork (2001–11) among women labor migrants in Istanbul and their families in southern Moldova, this essay is framed by a critique of the forms of nurturing that are often portrayed as normative in discussions of transnational mobility. Patricia Hill Collins’s foundational work on othermothering and her call for feminist scholarship to “shift the center” informs the analysis of three women’s accounts of their experience of nurturing from a distance as they engage in transnational labor migration. Turning attention to local histories and practices, such as the “other mother” in southern Moldova, points to the distinctive ways nurturing can take shape in communities of outmigration. Moreover, the essay examines how historical experience of both local and Soviet state structures of caregiving, as well as the current virtual communication era, have brought about a distinctive transnational nurturing nexus, where caregiving for children is provided in multiple forms, including through remittances from women labor migrants, state-run day-care sites, and migrants’ relatives. Ultimately, I argue that southern Moldovan nurturing practices, including mothering from a distance, or “other mothering,” provide an important case for thinking about classic feminist questions about the diverse forms that motherhood and nurturing may take, as well as about the ways transnational mobility shapes local practices of nurturing.

On Plastic Reason by Tobias Rees by Setrag Manoukian

28 Août 2017 - 9:21pm

Plastic Reason: An Anthropology of Brain Science in Embryogenetic Terms

by Tobias Rees

University of California Press, 2016, 352 pages

 

Plastic Reason is an excellent occasion to reflect on the relationship between poetry and science.

One might feel the proverbial contrastive tension in naming together poetry and science, a tension one finds in certain intellectual habits that foreground a distinction between human and non-human sciences, or in postures that romantically juxtapose the supposed freedom and creativity of poetry with the hard realities of science (social sciences included). However, at closer scrutiny, this tension reveals itself as an exciting site of possible conversations, to the extent that one might even end up arguing that there cannot be poetry without science, nor science without poetry. After all, the Italian philosopher Giambattista Vico (1668-1744) made a forceful case for the necessity of poetry in the “history of human nature,” conceptualizing poetic knowledge as the fundamental articulation of humans’ changing relationship with the world. Vico distinguished poetic knowledge from the sciences of nature, however this distinction was for him historical and relational, not absolute, with the understanding that, whatever humans might be, they could not be thought without both poetry and science.

Rees’s book is foremost an engagement with plastic conceptions of the brain, but as the author wrote me in a recent email exchange, it is also “concerned with a form of poetry.” So I began to read Plastic Reason asking myself what was this form of poetry, and whether the book could provide useful leads to think poetry and science together.

One can start by considering the sound/sense associations that the book brings to mind, for example Plastique/Poetique, a disjunctive pairing of sound and sense that foregrounds the malleability of language, and maybe therefore of reason, as implied in the title of the book, a title always present and never discussed. Reason, and thus Logos as malleable form, in vivo, and not, but it’s disjunctively implied, just in vitro, and definitely not logos as polymer, plastic, logos as fake. Therefore Plastic Reason, and not Plastic People, the 1967 song by Frank Zappa and the Mothers of Invention, itself a disjunctive associational segue to Louie Louie. And one could continue along this associational vein. But beyond the play of sound and sense, I found five more ways to approach Plastic Reason in relation to poetry.

First. Poetry as poiesis, as the coming into existence of form. All creation or passage of non-being into being is poiesisstates Diotima in Plato’s Symposium, debating with Socrates the question of Eros. In Plastic Reason the passage from non-being into being pertains to at least three parallel accounts. First, the account of the plastic brain, a brain constantly growing through embryogenesis, moving from nothing to form. Second, the account of how this idea of the plastic brain emerged in Paris between 1989 and the early years of the 21st century, how it grew out of an opposite conception of the brain that had dominated 20th century neuroscience, the idea of the brain as a fixed and stable structure, a machine. Third, the poetic account of Rees’ own research which, as he writes, parallels the growth of plasticity: “It was as if my fieldwork and plasticity literally coevolved” (p. 16) in the sense that fieldwork was “an aesthetic practice that allowed contingency to give rise to a form where before there was none” (p.10). This is being coming into existence, being in motion, Heraclitus, you never swim in the same river twice.

Second, Plastic Reason is concerned with poetry as epic, as epos. It is a story of heroic characters and deeds, the story of Alain Prochiantz, the French scientist who played a crucial role in developing the idea of the plastic brain, the scientist in whose laboratory Rees conducted his fieldwork, his main interlocutor. While this is not a book about Alain Prochiantz nor about Tobias Rees, it’s a book about Alain’s epos, and thus about the epic of the plastic brain, of how an idea deemed impossible, ridiculed by the neuroscientific community in the early nineties, took nevertheless form and became a reality. How, through trials and tribulations, Alain’s group managed to succeed, and how Alain, from being a marginal figure went on to be elected to a chair at the Collège de France, and, more recently, I discovered, to become administrator and president of the assembly of professors of the Collège. In this sense, it is an epic of relations, a modality Rees considers specific to French academia, but it is foremost an epic of how a French scientist transcends these relations to plasm new forms, and, in so doing, transcends the very form of the heroic epic itself: Alain Prochiantz, Rees argues in Chapter 11 titled “Ethical,” goes beyond the 19th century idea that humans as scientists have to heroically face the fact that the brain is a fixed machine. Poetry as epos also means that Plastic Reason is concerned with narrating the longer history of the idea of the plasticity of the brain across different disciplines and their attendant and often conflicting epistemologies. History of science in France, or history of French science, or history of French conceptual work on the sciences of the living (Bachelard, Canguilhem). Poetry as epos is also therefore a form of history or myth making, or more precisely a form of the history of the myth of science, or of the myth of the history of science.

Third, Plastic Reason is concerned with the difference between prose and poetry, that is to say the difference between on the one hand, what Rees describes as the daylight, diurnal operations, the habitual actions that delimit the contour of what is possible to think –logos as a simple instrument for getting through the day as a scientist– and on the other hand the “nocturnal,” those moments when these habitual contours are transcended and poetry – a way to name the unnamable—takes shape. This is what Alain Prochiantz, and Rees, in conversations with him, call the “work of ideas”: writing and reading, creating out of the impossible the possibility to be possessed by ideas and generate new, unexpected openings –Bergson’s intuition Alain says. The ideas come from his ancestors, but also from elsewhere, the arts in particular, and they all contribute to the embryogenesis of other ideas, ideas that will define the plasticity of life. Through the juxtaposition of diurnal and nocturnal forms of knowing, Rees navigates one of the most perilous disjunctive pairings of the book, that between ideas and practices, intelligence and stupidity, repetition and difference, science as institution and science as growth. Prose and poetry.

Fourth Plastic Reason is concerned with poetry as craft, the patient, artisanal work of constituting the real at the bench, in the laboratory. This is a poetry of devotion to tools and procedures, a question of measures, precision and patience but a poetry that should not fetishize the lab, as science studies tend sometimes to do nowadays. Though Rees describes explicitly this experimental activity as “poetic” in conversations with Maria Luz Montesinos at the bench, and although he articulates its necessity, the experimental remains in the domain of the diurnal or the “largely already known,” and does not become real poetry unless it is supplemented by the work of ideas, conceived as a work of “actualization”: only ideas can establish the conditions of possibility for the technical to actualize them. Yes, after all there are some disjunctive echoes of Plato in some passages of the book. This distinction between the poetic and the technical, this notion that to make poetry you need something that goes beyond a finely executed exercise, also reminded me of the distinction in Persian literary traditions between a “verse- writer” (she‘rgu) and poet (shâ‘er), between those who know the rules of composition and can write verses, but whose verses are not poetic, and those instead who actually achieve the disjunctive pairing of sound and sense, the real poets. Poetry as supplement.

Fifth Plastic Reason is concerned with the relationship between poetry and life. Morphogenesis, the birth of forms of life—Eros, hence desire, described in the book in reference to the film Le dernier Métro that Prochiantz once brings up in conversation, but also life as the human. Plasticity brings logos under the sign of life, and works towards a convergence of the two terms: a plastic way of being, a poetic life, hence a scientific life (that of Alain) –hence a human life– this is what certain passages of Plastic Reason, especially those about “vital concepts” made me think of.

However, a form entirely subsumed into a vital brain, an entirely plastic/poetic logos, absolute motion, would resolutely resolve and thus dissolve the ambiguity between the possible and the impossible, between the known and the unknowable, immanence and transcendence. It would make logos, language, the site of being, the site of what it is, turning the instability and motion of the living into its opposite, sealing the destiny of the human. This is the work of theology, and its secularized forms, possibly science included. And it requires an act of conversion, or at least a call to conversion: leave everything behind, everything you held on to, let go and live the real poetic life, be different from what you are, and follow plasticity wherever it might take you. Eros again.

Such poetic calls however need not be absolute and one can think differently of poetry, and of the relationship between poetry and science (as Plastic Reason does in many passages). One can think that either as association, or creation, epos, lyric, technology or even life, poetry is on the contrary the site of a disjuncture, an encounter between knowledge and non-knowledge, where the greyness of the everyday daylight is as necessary as the creative sparks of the nocturnal, and one cannot be thought without the other: poetry as also prose. Seen in this light, the venerable Persian distinction between verse-writers and poets is not one between mere technicians and inspired visionaries, but rather one of the many ways to highlight the necessary distinction and conjunction of two dimensions of experience. On the one hand, the repeated and sedimented practice of constructing poetic lines relying on previous verses, while experimenting with novel combinations of known materials, on the other hand, sudden moments of heightened perception that capture at a glance something of what seemed beyond grasp. What matters is the unstable but necessary combination of these two modalities, since each taken by itself, would not be sufficient to produce poetry.

In this view, desire, rather than eternal bliss or unbound epiphany, is the site of an intermittence: the will to know, the power of poetry, rests in the instability that it generates, in the play of frustrated and warranted expectations that defer closure, as linguist Roman Jakobson famously stated. It is on this terrain that the relationship between poetry and science can be conceptualized: not just poets writing about science, or scientists writing poems, rather an idea of knowledge as the site of a shifting, fragmented, set of passages from truth to beauty and viceversa: a pleasurable knowledge (see G. Agamben, Taste, Seagull Books, 2017).

As Rees shows in his exiting book, the pleasurable combination of poetry and science seems to be perfectly amenable to current visions of a plastic reason, and its attendant anthropological accounts, but chances are that when the idea of plastic reason will have been superseded by other ideas, the passages between poetry and science will still be able to provoke pleasures, this time for different reasons.

 

Setrag Manoukian is an Italian anthropologist teaching at McGill University in Montreal. He is the author of City of Knowledge in Twentieth Century Iran: Shiraz, History, Poetry (Routledge 2012). He blogs at https://thepoetryofanthropology.blogspot.ca/

Teaching Disability Studies in the Era of Trump by Pamela Block

23 Août 2017 - 11:49pm

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

In our first course session of January 27, 2017, we focused on the history of eugenics and subsequent critiques in the United States and internationally, which might seem to be an odd beginning to a course on foundations in disability studies, but we consider eugenics as a disability-relevant social, moral, political, and scientific movement. For this class, we asked students to consider the intersectional focus of the eugenics agenda with a specific focus on managing or eliminating disabled people. Our course meeting happened to be on International Holocaust Remembrance day, and the Trump White House released a statement about the Holocaust that did not mention Jews. It was also less than 24 hours before Trump’s (first) immigrant ban was put in place via executive order.

We assigned a variety of period and reflective readings, including: “The Kallikak Family: A Study in the Heredity of Feeble-Mindedness” by Henry H. Goddard; (1913); “White Trash: Eugenics as Social Ideology” by Nicole Rafter (1988); The Legal Status of Eugenical Sterilization by Henry H. Laughlin (1930); “‘Puffy, Ugly, Slothful and Inert’ Degeneration in Brazilian Social Thought, 1880-1940” by Dain Borges (1993); The Nazi Doctors: Medical Killing and the Psychology of Genocide by Robert J. Lifton (1986), and three articles by Franz Boas: “Changes in the Bodily Form of Descendants of Immigrants,” (1912), “Eugenics (1916), and “New Evidence in Regard to the Instability of Human Types,” (1916). We also viewed portions of David Mitchell and Sharon Snyder’s film “World without Bodies” (2001), and Petra Kuppers and Neil Marcus’ “Journey to the Holocaust Memorial” (2011); these latter pieces are available on YouTube (Kuppers and Marcus 2011) and represent a slice of disability studies scholars and activists attempts make sense of and claim a role in the history of the holocaust.

Indeed, degeneracy theories (Borges 1993) and eugenics, defined as the “well-born science” (Bayton 2016, Kevles 1998) are good places to start any foundations course in disability studies. Looked at from a certain angle these theories present a shadow image of disability studies – or perhaps a forms of disability studies all their own – scholarly and policy movements with policy agendas to address intersectional identities of people whose lives encompassed realities of race, gender, sexuality, ethnicity, economic status, addiction, illness and disability in the late 19th and early 20th centuries. Racialized degeneracy theory was characterized the loss of superior qualities through inter-breeding with inferior types (Gobineau 1853) but there might also be “cumulative hereditary psychiatric decline” even in white families (Moreau 1976). The stages of degeneration were as follows:

  1. A nervous or alcoholic individual
  2. Passed down the hereditary tendency for illness to the following generation who was “weak” and “epileptic,”
  3. Third generation showed signs of insanity
  4. The fourth and final generation exhibited imbecility and sterility (Borges 1993)

These perceptions of a family’s physical and mental decline often combined, and perhaps provided an explanation for, economic decline.

A distinction has often been made between positive and negative eugenics. In the early 20th century United States, for example, promoting the effort to increase the number of children born to families considered of high quality was considered to be positive eugenics. Negative eugenics, on the other hand, was said to be focused on reducing or eliminating the number of children born to families who were framed as social problems – because of poverty, behavior (or potential behavior) considered socially and sexually transgressive, because they may be immigrants or indigenous people, or of mixed race or ethnicity or because they lived somewhere inconvenient and needed to be moved so that dams could be built or parks established (Rafter 1988). Part of managing these varied inconvenient populations involved the determination that their bodies and minds were inferior. Immigrants were the easiest to manage by drastically reducing the numbers allowed entrance with the immigrant restriction acts of 1921 and 1924 (Pew Research Center 2015). As is happening today, the nativist discourse of the era intersected with eugenics to keep certain populations from entering the United States or targeted them for removal. Early intelligence tests were administered and it was determined that most immigrants were mentally deficient, being unable to adequately answer questions framed outside of their cultural experiences in a language that was largely (or wholly) unfamiliar (Bayton 2016, Kevles 1998). This foreshadows the Trump administration’s attempts to portray undocumented people as dangerous criminals that must be removed.

Goddard (1912) was involved in advocating for the wide-scale institutionalization of feebleminded people. In later years he also became deeply involved in the assessment of immigrants’ intelligence, but first he was part of a scholarly trend of writing family studies (Rafter, 1988) where lay researchers were sent to people’s houses to get family histories and to assess the intelligence and moral character of the story tellers. He told the story of the “Kallikaks” a family who, according to Goddard and his research assistants, descended from the illegitimate children of a man considered of high quality and a “tavern wench” who was assessed to be feebleminded. Though Deborah Kallikak looked appealing (especially in the clean and controlled circumstances of the institution), she could easily have looked like the demonic looking people in the doctored photographs that Goddard provided, of Kallikaks living unfettered in the community. While Deborah Kallikak seemingly passed as normal, there was something ominously wrong with her and she needed to be locked up to keep both her and the general population safe. Deborah’s story was used to justify the widespread and large-scale institutionalization of people considered feebleminded across the United States.

When institutionalization became too expensive, people like Henry Laughlin of the Cold Spring Harbor Eugenics Record Office advocated for sterilization. Laughlin’s model sterilization law was used as the basis for the sterilization laws passed in two dozen US states and in Nazi Germany. Laughlin’s list of 10 types that should be sterilized was broad enough that almost anyone could be conveniently characterized:

  1. feeble-minded;
  2. insane (including psychopathic);
  3. criminalistic (including the delinquent and wayward);
  4. epileptic;
  5. inebriate (including drug habituees);
  6. diseased (including the tuberculous, the syphilitic, the leprous, and others with chronic, infectious, and legally segregable diseases);
  7. blind (including those with seriously impaired vision);
  8. deaf (including those with seriously impaired hearing);
  9. deformed (including the crippled) and;
  10. dependent (including orphans, ne’er-do-wells, the homeless, tramps and paupers), (Laughlin 1930:65).

There was never a consensus in favor of eugenics in the United States, but it was very popular across the political spectrum, embraced not just by conservatives but also by reformers, socialists and other groups on the left. Franz Boas, a US founder of anthropology and an immigrant himself, was an ardent opponent of eugenics (1912, 1916a, 1916b). He and his students provided an evidence base that dismantled the theories of inherent biological superiority (or inferiority) of certain types of people.

As noted earlier Germany was influenced by the US eugenics movement to the extent that it used Laughlin’s (1930) model sterilization law as the basis for the German Law. However Germany moved much further along in their eugenics agenda to consider not just sterilization but the actual elimination of living populations, starting with disabled people. As detailed in Lifton’s (1986) book doctors and other medical professionals developed mechanisms for implementing this policy goal. Disabled children and adults were killed first via starvation and the implementation of drugs that killed slowly but these methods were too slow and unsavory so technology-based solutions were developed for more efficient killing. As detailed in the Mitchell and Snyder film “World Without Bodies” (2001) the people were brought to the killing centers in busses with blacked out windows, the people were lined up, stripped, photographed, examined and then marched to the killing chambers. Witnesses looking through a peephole described the writhing bodies and faces gasping for air and the tangled piles of corpses found when the doors were opened. In previous years of teaching, Pam noted that students are openly crying at this point, and to bring the class back into emotional balance we then watch the beautiful video produced by Kuppers and Marcus (2011) where the process of assessing, selecting and directing of disabled bodies is lovingly reimagined as a consensual and communal process involving touch and breath.

How is this relevant to our current times? We have seen people point to genetics research and its potential to shape social policy and individual choices. For example, should people who give birth knowing their child might be disabled have the right to benefits? Should doctors who wrongly tell pregnant mothers that their children are free of the risk of Down syndrome be liable if the child is indeed born with Down? Should men and women choose not to have children or sometimes not even to marry if there is a high risk of an inheritable diagnosis? However we often do not consider such questions and decisions to be eugenics, and scholars have debated what to call them. Perhaps these processes are influenced by a legacy from the eugenics era but what we prefer to label as eugenics is linked to particular historical period times and places in the early to mid-20th century.

As we indicated, we find disability studies and eugenics to be similar in some ways. There is an intertwining of intellectual and activist elements and a desire to document and provide evidence with the goal of influencing policy for perceived positive social change. Of course what was considered positive or progressive for eugenicists was diametrically opposed to the sorts of reforms that disability studies and disabled activists seek. Yet both are distinct from the anti-intellectual components of Trump era politics. Whereas eugenics-era scientists at least attempted to compile a systematic evidence base, in the Trump era a call-line asking people to report supposed crimes enacted by undocumented people is meant to serve as sufficient evidence. Proposed health care reform during the Trump era requires neither an economic nor a scientific evidence base as justification to be passed by the House of Representatives. Representatives rushed to pass their bill, not waiting for an economic analysis and falsely stated that pre-existing conditions would continue to be covered under the proposed legislation. Also similar to the moral arguments raised during the eugenics era, one congressperson misrepresented the nature of disability and chronic conditions as something that people could control if they “lead good lives they’re healthy, they’ve done the things to keep their bodies healthy,” (Chait 2017). Under this rationale if you get sick or become disabled you apparently deserve it because you are at fault. Whereas eugenics worked well in conjunction with nativism, patriarchy and racism in ways that feel resonant to what is happening today, it was also strongly opposed by many religious forces that currently work in tandem with Trump’s project. Although eugenicists believed firmly in their scientific method and in the transformative power of their research, it has since been revealed to be flawed and conveniently framed to support elite and capitalist priorities (Bayton 2016).

Countless hundreds of thousands in the US – and millions worldwide suffered and died at the hands of eugenics ideologies and practices (Kevles 1998, Lifton 1986). There is potential for suffering in the current practices of making inconvenient populations disappear, in incarcerating and ejecting on a grand scale, in determining who is and is not entitled to what kinds of health, education and social supports, and in the gutting of the already-thin social safety net. We know that already vulnerable people will die. We know many disabled people are vulnerable. We are already seeing it unfold. Although disabled people are not specifically targeted (at this point anyway) – disability is used as a justification to contain other populations, immigrant populations who are represented as criminals, unstable, and violent. Both targeted immigrant groups, Muslims and those from Central and Latin America, have a history of being pathologized and dehumanized in ways that incorporate disability (Block, Balcazar and Keys 2001, Patel 2014). We can also see a familiar way that gender, sexuality, addiction, mental illness and criminality are brought into play to identify urban black populations as threatening (Ben Moshe et al. 2014). A consistent similarity between eugenics and the Trump era is this deployment of intersectional characteristics and the mobilization of disability as a means of making broader claims to discredit other kinds of differences. Disability functions as what Snyder and Mitchell (2013) call narrative prosthesis – in other words as a prop with no real engagement with material conditions or experiences of disability and disablement. While we saw forms of able-nationalism (Snyder and Mitchell 2010) before, there is something distinct happening under Trump whereby it does not even seem that there is a mask of benevolence: disability has been discredited starting from Trump’s actions mocking a disabled reporter on the campaign trail to Jeff Sessions’ and Betsy DeVos’ comments about disabled children in schools. However, it is possible that the lack of benevolence will provide an opportunity for politics to emerge. Indeed, we have seen the mobilization of disabled voters with #cripthevote #Iamapreexistingcondition and the January 2017 Women’s March, which planners argued was the largest gathering of disabled people in the United States, an interesting claim to consider.

There appears to be a great deal of grass roots activism as well, in school district meetings, in local disability groups forming to lobby local representatives, and on college campuses. We know that we are in for some hard times; we know that people will die and indeed are already dying from the ever-growing holes in the US health system. The largest provider of mental health services in the country is the US prison system and the already active school-to-prison pipeline and for-profit incarceration centers for prisoners of all sorts have ample opportunity for growth in this era (Ben Moshe et al. 2014). We grew up in the age of deinstitutionalization but we are living in a time now in which there are both vocal calls and quiet structural changes that entrap disabled people in institutions of various sorts. Thus it is our (sad) responsibility as anthropologists and disability studies scholars to direct our students to study these trends and as activists to prepare to resist them.

 

References

Bayton, D.C. 2016. Defectives in the Land: Disability and Immigration in the Age of Eugenics. Chicago, IL: U. Chicago Press.

Ben Moshe, L. Carey, A. and Chapman C. 2014. Disability Incarcerated. New York: Palgrave.

Block, P., Balcazar, B., & Keys, C. 2001. From Pathology to Power: Rethinking Race, Poverty and Disability. Journal of Disability Policy Studies. 12(1):18-27.

Boas, F. 1912. Changes in the Bodily Form of Descendents of Immigrants. American Anthropologist. 14(3).

Boas, F. 1916. Eugenics. Scientific Monthly. 3:471-478.

Boas. F. 1916. New Evidence in Regard to the Instability of Human Types. Proceedings of the National Academy of Sciences, Volume 2.

Borges, Dain 1993. ‘Puffy, Ugly, Slothful and Inert’ Degeneration in Brazilian Social Thought, 1880-1940. Journal of Latin American Studies 25:235-56.

Chait, J. 2017. Republican Blurts Out That Sick People Don’t Deserve Affordable Care. New York Magazine, May 1, 2017 retrieved on May 12, 2017 http://nymag.com/daily/intelligencer/2017/05/republican-sick-people-dont-deserve-affordable-care.html

Gobineau, A. 1853. Inequality of Races, G. P. Putnam’s Sons, New York.

Goddard, H.H. 1913. The Kallikak Family: A Study in the Heredity of Feeble-Mindedness. New York: The MacMillan Company. http://digitalarchive.gsu.edu/cgi/viewcontent.cgi?article=1006&context=col_facpub

Kevles, D. J. 1998. In the Name of Eugenics. Boston, MA: Harvard University Press.

Kuppers, P., and Marcus N. 2011. Journey to the Holocaust Memorial https://www.youtube.com/watch?v=no-ZohJxWZE

Lifton, R.J. 1986. The Nazi Doctors: Medical Killing and the Psychology of Genocide. New York: Basic Books Inc.

Mitchell, D and Snyder S. 2001. World Without Bodies: https://www.youtube.com/watch?v=vry33t9BWL8

Mitchell, D and Snyder, S.. 2013. Narrative Prosthesis. 223-335. ed. Lennard Davis. The Disability Studies Reader, Fourth Edition. New York: Routledge.

Moreau, B. A. 1976. Traité des dégénrescences physiques, intellectuelles et morales de l’espèce humaine, Arno Press, New York.

Patel, S. 2015. Racing Madness: The Terrorizing Madness of the Post-9/11 Terrorist Body. In Disability Incarcerated (eds. Liat Ben Moshe, Allison Carey and Chris Chapman). New York: Palgrave.

Pew Research Center, 2015. “Modern Immigration Wave Brings 59 Million to U.S., Driving Population Growth and Change Through 2065: Views of Immigration’s Impact on U.S. Society Mixed.” Washington, D.C.: September.

Puar, J. 2007. Terrorist Assemblages: homonationalism in queer times. Durham and London: Duke University Press.

Rafter, N.H.1988 White Trash: Eugenics as Social Ideology. Transaction/Society. 26(1):43-49.

Snyder, S. and Mitchell, D. 2010. Ablenationalism and the Geo-Politics of Disability. The Journal of Literary & Cultural Disability Studies. 4(2):113-125.

 

Pamela Block is a Professor of Disability Studies at Stony Brook University.  Michele Friedner is a former faculty member in the Stony Brook University School of Health Technology and Management, where she taught with Pamela Block. She is currently an Assistant Professor in the University of Chicago’s Department of Comparative Human Development.

Aftermath is a series examining the consequences of recent nationalist political turns throughout the world. We are particularly interested in pieces which reflect on how these events intersect with the thematic concerns of the site – health, medicine and science, broadly construed. Please send your suggestions for pieces, completed pieces, or inquiries to admin@somatosphere.net

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

22 Août 2017 - 9:36pm

Prozak Diaries: Psychiatry and Generational Memory in Iran

Orkideh Behrouzan

Stanford University Press, 2016, 328 pages

 

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

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

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

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

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

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

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

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

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

 

Works Cited

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

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

 

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

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

17 Août 2017 - 10:36pm

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

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

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

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

 

Science and Fiction; Reach and Influence

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

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

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

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

 

Science Fiction in Reproductive Ethics and Feminist Studies

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

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

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

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

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

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

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

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

 

Conclusion: From Theater to Classroom

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

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

 

Bibliography

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

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

Franklin, Sarah. 2007. Dolly Mixtures: The Remaking of Genealogy. Durham: Duke University Press.

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

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

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

In the Journals – July 2017 by Danya Glabau

4 Août 2017 - 9:07pm

American Quarterly

Queer History, Mad History, and the Politics of Health

Regina Kunzel

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

 

Configurations

Immunity, Modernity, and the Biopolitics of Vaccination Resistance

Bernice L. Hausman

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

Cultural and Biological Immunization: A Biopolitical Analysis of Immigration Apparatuses

Greg Bird and Jon Short

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

 

Critical Public Health

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

Melody J. Slashinski

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

 

Current Anthropology

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

Adia Benton, Thurka Sangaramoorthy, and Ippolytos Kalofonos

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

 

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

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

 Yiling Hung 

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

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

Thomas Abrams and Barbara E Gibson

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

 

Health and Place

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

Jo Little

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

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

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

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

 

Health, Risk, and Society

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

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

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

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

 Rony Blank-Gomel

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

 

Journal of the History of Medicine and Allied Sciences

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

Christopher D. Willoughby

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

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

 Sarah Trainer, Amber Wutich, and Alexandra Brewis

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

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

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

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

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

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

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

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

René Umlauf 

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

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

Marlee Tichenor

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

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

Julian Eckl

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

 

Science, Technology, & Human Values

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

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

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

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

Kellie Owens

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

 

Social Science and Medicine

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

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

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

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

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

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

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

Edmund Coleman-Fountain

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

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

Annalise Weckesser, Elaine Denny, the EMPIRE Collaborative Network

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

Sociology of Health & Illness

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

 Anna Leppo and Riikka Perälä

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

Theory, Culture, and Society

Probiotic Environmentalities: Rewilding with Wolves and Worms

Jamie Lorimer

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

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