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Science, Medicine, and Anthropology
Mis à jour : il y a 7 heures 36 min

Diagnostics without diagnosis: RDTs for Sleeping Sickness in Uganda by Shona Lee

25 Avril 2018 - 1:02pm

Diagnosing sleeping sickness (also known as human African trypanosomiasis (HAT)) is complicated, requiring the alignment of clinical suspicion with serological, parasitological, and molecular confirmation to determine appropriate treatment. Previously, diagnosis was carried out by mobile lab teams which confirmed cases in village screenings and transported patients for treatment. Since cases have declined however, expensive active screening campaigns have been phased out and replaced with passive, symptom-based algorithms. Without early treatment sleeping sickness is fatal, yet timely diagnosis in regional referral hospitals is difficult to access for many of the remote, rural communities predominantly affected. Rapid Diagnostic Tests (RDTs) are designed to be affordable, portable and easy-to-use; desirable attributes in resource-poor settings, and favourable in disease elimination conditions where case numbers are low and dispersed across remote areas.

In 2013, an RDT-based passive surveillance strategy was implemented in Uganda to spearhead an intensified T.b. gambiense HAT elimination programme. The finger-prick test developed by FIND with academic, manufacturing and national control programme partners, detects antibodies in fresh blood samples against two trypanosome antigens. It ostensibly requires minimal training of health workers and produces a positive or negative result within 15 minutes. Tests provided by FIND were delivered through the national elimination programme to frontline health facilities as part of a new sleeping sickness diagnostic algorithm, to be conducted when symptomatic patients tested RDT negative for malaria. As the elimination programme area is also endemic for malaria, staff at all facilities were already familiar with performing malaria RDTs. This familiarity prefigured the implementation of an RDT for sleeping sickness and it was assumed the test could be absorbed seamlessly into a pre-established diagnostic routine.

Malaria and HAT RDTs have shared aesthetic features (pictured), but how similar are their social lives? Post testing, the diagnostic processes they initiate significantly diverge. Owing to the potentially toxic nature of HAT drugs, treatment cannot be administered based on clinical suspicion or RDT results alone, and patients must travel to hospital for follow-up tests (microscopy, PCR, and if still positive, lumbar puncture). This can be disappointing for patients, and confusing when negative follow-up tests contradict initial positive RDT results, the most common outcome in elimination settings. For patients contemplating the costs and benefits of completing HAT referrals in a place where sleeping sickness is rare and it is unlikely they’ll be confirmed as ‘true’ cases in need of treatment, the implications are profound. Falling short of expectations set by the malaria model it sought to assimilate into, the HAT RDT not only fails to eliminate the need for a laboratory, but introduces additional layers of diagnosis, bureaucracy, and travel for patients and health workers. In contrast to the mobile team-led system which preceded the RDT, the diagnostic algorithm for HAT is divided across different levels of the health system and geographic spaces, requiring patients to travel between institutions by their own means. It begs the question, where does diagnosis actually occur in this system?

The hope that the sleeping sickness RDT would integrate seamlessly into the existing malaria diagnostic ecosystem was premised on a presumed similarity between the two RDTs that in fact did not extend beyond the physical features of the device itself. But diagnosis cannot be reduced to the result shown in the RDT window. It is a spatially and temporally distributed process that comprises a dynamic assemblage of infrastructures, including health information systems, supply chains, clinical expertise and, crucially, patient decision-making. Diagnostic ecosystems are as fragile as they are dynamic and complex, and new technologies can have unpredictable and destabilising effects on relationships between diagnosis and care.

 

Shona Jane Lee is a PhD candidate at the University of Edinburg, and a member of the multidisciplinary Investigating Networks of Zoonosis Innovations (INZI)research group at the Centre of African Studies. She holds an ESRC AQM studentship for her project on the socio-technical systems of disease control, focussing on novel technological interventions for sleeping sickness control and elimination in Uganda.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

Andrew Lakoff’s Unprepared: Global Health in a Time of Emergency by Christos Lynteris

24 Avril 2018 - 3:12pm

Unprepared: Global Health in a Time of Emergency

Andrew Lakoff

University of California Press, 2017. 240 pages.

 

Let us be frank: it is hard to think preparedness in the medical humanities without thinking of Andrew Lakoff. Over the ten years since the publication of his first piece on the subject (2007), Lakoff has developed, expanded and refined the critical study of new public health and epidemiological frameworks of anticipating and preparing for infectious disease epidemics.[i] These works already define the field, and in dialogue with a flourishing array of studies by other medical anthropologists they have come to redefine our understanding of global health as a biopolitical terrain. The monograph Unprepared, published last year by the University of California Press, not only summarizes these works but also fosters their broader theoretical and methodological coherence and propels them through new ethnographic trajectories.

What perhaps most elicits the attention of a reader already familiar with Lakoff’s work and argument is a low-key and yet pervasive theme spanning the book: the imagination. Pandemic threat, Lakoff argues, “can be understood and managed as an unprecedented but potentially catastrophic event whose consequences can only be managed by using methods of imaginative enactment that enable planners to mitigate vulnerabilities,” (p.8). The shift from precaution to preparedness, as understood by Lakoff, requires both a different way of imagining existential risk, and a different way of enacting this imagination as a means of rendering existential risk actionable. Hence the extent to which we can be prepared for the next pandemic depends on the extent to and the ways in which we are able to imagine it as a social and biological event in the first place.

Lakoff provides a potent critique of the international response to the recent Ebola epidemic from an “imaginary” angle that complements well-established claims that (as a technology of global health security) preparedness led to a neglect of the public health infrastructure’s collapse, and the importance of this neglect in implementing contact-tracing, isolation, quarantine, etc. on the ground. He claims that the delay of international response to the outbreak was “at least in part” due to a failure of “administrative imagination: at a crucial stage, health authorities did not conceptualize Ebola as the potential source of catastrophic epidemic, but rather understood it as a disease that could be managed via localized humanitarian care combined with straightforward public heath techniques” (p.141). This failure of the imagination, Lakoff argues, is at first sight surprising, given the importance of Ebola to the rise and consolidation of emerging infectious disease frameworks, and the imaginary investment in Ebola as a “killer virus” in popular and scientific literature as well as novels and films since the early 1990s. “Indeed, the “Super-Ebola” exercise in Honolulu was among the events that helped introduce pandemic preparedness as a central problem for international health,” (p.145). Yet, Lakoff argues, it is precisely the prevailing imagination of the “next pandemic” that caused international complacency on Ebola during the first months of the outbreak. Expecting a novel super-virus, epidemiologists were so entangled in what Carlo Caduff has called the “mutant ontology” of emergence, that they could not imagine that a known virus, like the one that was spreading in West Africa, could lead to a pandemic crisis.[ii]

As Lakoff is keen is to develop a Cold War genealogy of preparedness, it is tempting here to attempt an “imaginary” comparison. Fifty years ago, in one of the first and most profound analyses on the subject, Günther Anders identified an “imagination-deficit” as lying at the core of nuclear catastrophe.[iii] The object of this deficit was not the material impact of nuclear war. This had already become quite apparent in the world-historical atrocity of Hiroshima and Nagasaki, and only required a scalar projection to be envisioned on a global scale. What, by contrast, remained outside the realm of imagination was the temporal impact of this event. This was in Anders’s terms, “over-liminal” (überschwellige); a term used to describe “phenomena that cannot be grasped and intellectually assimilated because they outgrow the size of any of the sensual/conceptual nets”.[iv] In a famous turn of phrase, recently picked up again by Déborah Danowski and Eduardo Viveiros de Castro, Anders specified that the problem with nuclear war is that it signals not simply a time when we will not be, but a time when we will have never been.[v]

Though genealogically linked and drawing on an array of images and ideas of the Cold War, pandemic preparedness markedly differs from them in a number of ways: the existential risk involved is asymmetric, it originates in nature, and it relies not on unilateral action but on human connectedness (contagion). This entails an ontological transformation of catastrophic, end-of-the-world imaginary. In the case of nuclear war, making the unimagined imaginable entailed a concrete hope: that of cancelling the end of the world by means of a universal stasis against the powers or systems that were engineering it in the first place (according to different narratives: the Pentagon/Kremlin, imperialism, militarism, etc.). By contrast, in the case of the next pandemic, making the consequences of the catastrophe imaginable claims no power to stop or delay the event – for the event is in the first place and imagined as being, by its nature, inevitable. Instead its role is to mitigate what Lakoff diagnoses as the “misalignment between the normative rationality of epidemic preparedness and the experience of managing actual disease outbreaks,” (p.166).

Imaginary enactment thus needs to be seen as the pivot between two key aspects of preparedness: as a biopolitical practice that (re)defines and responds to health emergencies, and as a mythic enactment of a new end of the world. Lakoff’s book provides an undisputed milestone in the discussion of the first, while at the same time providing key links to the second. And in so doing, it illuminates how becoming-unprepared is precisely what lies at the arcane heart of preparedness as an apparatus that mobilizes imaginaries and sensibilities of emergency in a perpetual deferral of being-prepared.

As studies in historical ontology, Lakoff’s works have taught us how to see today’s world of epidemic anticipation and control beyond that cornerstone of hygienic modernity: prevention. Unprepared fulfils the promise of his invitation to the dizzying depths of global health security by laying bare how enactments of readiness are intricately and at the same time anxiously linked to an unstable constitution of threat.

 

Christos Lynteris is Senior Lecturer in Social Anthropology at the University of St Andrews and Principal Investigator of the European Research Council funded project Visual Representations of the Third Plague Pandemic (St Andrews & Cambridge). His research examines biopolitical, epistemological and aesthetic aspects of infectious disease epidemics and epidemiology, with a focus on plague and zoonotic diseases. He is the author of The Spirit of Selflessness in Maoist China (2012) and Ethnographic Plague (2016) and has edited and co-edited a series of works, the most recent of which is Histories of Post-Mortem Contagion: Infectious Bodies and Contested Burials (with Nicholas Evans, 2018).

 

Notes

[i] Andrew Lakoff, “Preparing for the Next Emergency,” Public Culture 19 (2) (2007): 247-271.

[ii] Carlo Caduff, The Pandemic Perhaps: Dramatic Events in a Public Culture of Danger (Berkeley CA: The University of California Press, 2015).

[iii] Günther Anders, Die Antiquiertheit des Menschen, 2 Vols (Munich: C. H. Beck, 2002). For a discussion on the “lack of imagination” in Anders’s work see: Paul van Dijk, Anthropology in the Age of Technology: The Philosophical Contribution of Günther Anders (Amsterdam: Brill, 2000).

[iv] Zygmunt Bauman, “A Natural History of Evil,” S:I.M.O.N (22 March 2012) http://simon.vwi.ac.at/index.php/swl-reader/21-a-natural-history-of-evil.

[v] Déborah Danowski and Eduardo Viveiros de Castro, The Ends of the World, translated by Rodrigo Nunes (Cambridge: Polity, 2016).

Diagnosing trachoma for elimination by Emma Harding-Esch

23 Avril 2018 - 3:22pm

 

WHO simplified grading system for trachoma diagnosis. These photographs are reproduced with permission from the WHO Programme for the Prevention of Blindness and Deafness

Trachoma is the leading infectious cause of blindness worldwide, caused by ocular infection with the bacterium Chlamydia trachomatis. Trachoma is targeted for elimination as a public health problem by the year 2020. The treatment and prevention strategy to achieve elimination is known as SAFE, and includes: Surgery for in-turned eyelashes, Antibiotics, given as mass drug administration (or MDA), to treat infection, and Facial cleanliness and Environmental improvement to limit transmission of infection. Trachoma is a community disease, and as such, prevalence estimates and interventions are provided at the district level (normal administrative unit for health care management).

Trachoma is diagnosed using clinical signs, using what is known as the World Health Organization (WHO) simplified grading system. This grading system correlates with the pathogenesis of the disease, with the early signs of trachoma detected by everting the upper eyelid and examining the subtarsal conjunctiva. Ocular infection with chlamydia predominantly occurs in children, and results in a keratoconjunctivitis. Trachomatous inflammation-follicular (TF), where there are characteristic off-white follicles of ≥0.5 mm, is the characteristic sign of active trachoma. Some individuals develop intense inflammatory disease (Trachomatous inflammation-intense [TI]) and after repeated rounds of infection there can trachomatous scarring (TS), which can cause distortion of the lid margin and shortening of the upper eyelid, pulling the eye lashes inwards to scratch against the eyeball (trachomatous trichiasis [TT]), which may then result in corneal opacity and blindness.

To certify as having eliminated trachoma, countries submit a dossier to WHO, including showing that the prevalence of TT unknown to the health system is <2 cases per 1000 population aged ≥15 years, and that the prevalence of TF in 1-9 year-olds has fallen below 5%, and that this has been sustained for at least two years, in each formerly endemic district. However, the presence of clinical signs of active trachoma (TF and TI) is poorly correlated with detection of infection, especially after MDA where clinical signs tend to over-estimate prevalence relative to infection. The result is that: 1.) We may be conducting unnecessary rounds of MDA; and 2.) Countries may have eliminated ocular chlamydial infection, but not be able to certify as having eliminated trachoma.

Studies have shown that tests for infection, including lab-based nucleic acid amplification tests, can be cost-effective, especially when their use results in stopping or not initiating MDA [1]. However, these tests have not been implemented or maintained long-term outside the context of research studies, due to the cost relative to the WHO simplified grading system, and infrastructure, training and quality assurance requirements. A number of companies are developing rapid/point-of-care tests for detection of genital chlamydial infection, but these are targeted primarily for use in high-income countries, and may require optimisation for ocular samples, such as the composition of the sample preparation reagents. There therefore remains a need for a fit-for-purpose (“ASSURED”) diagnostic test that can be conducted in-country after minimal training, in order to provide community level prevalence estimates to guide elimination efforts.

 

Emma Harding-Esch is Associate Professor at the London School of Hygiene & Tropical Medicine. She is also Chief Scientist for Tropical Data, a service supporting national programmes to conduct standardised, epidemiologically robust, prevalence surveys of neglected tropical diseases, allowing interventions for disease elimination to be targeted and prioritised. She has a particular research interest in diagnostics for both trachoma and sexually transmitted infections (STIs). She has evaluated the performance and cost-effectiveness of diagnostics for trachoma in The Gambia and Senegal, and was Principal Scientist in the HIV/STI department at Public Health England, and Epidemiology Lead for the Applied Diagnostic Research & Evaluation Unit (ADREU) at St George’s, University of London, where she conducted several diagnostic evaluations to assess the performance, clinical and public health impacts of novel diagnostic technologies for STIs.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

Note

[1] A.M. Ramadhani, T. Derrick, D. Macleod, M.J. Holland, M.J. Burton, PLoS neglected tropical diseases 10(10) (2016) e0005080.

Web Roundup: Death, Life, and the Immortal Brain by Kathleen Lynch

23 Avril 2018 - 7:25am

Among the many tech-focused booths at the Consumer Electronics Show (CES) early this year, one stood out in particular: an exhibition of manufactured bodies, or “sleeves,” into which someone could theoretically download their consciousness. The exhibition was a promotion for the new Netflix series Altered Carbon, a science fiction saga set 300 years in the future where individuals can transfer their thoughts and memories from body to body, via an implanted data stack. While the booth was clearly an example of brand activation, it seemed an eerily prescient glimpse into a growing area of Silicon Valley-driven consciousness-preservation research.

While to many it may sound like pure science fiction, or even the height of hubris, “immortality” research populated science and technology headlines last month, starting with one startup’s headline-grabbing pitch to Y Combinator: that they have created a “mind uploading service that it 100 percent fatal.” Pitching a high-tech embalming process, the company, called Nectome, claims that it can “back up your mind,” preserving your brain so well—to a degree that every synapse can be seen with an electron microscope—that it can one day be “re-activated,” or scanned into a computer simulation. Essentially, they claim it is a modern version of cryogenics, a way of preserving the connectome (the web of synapses that connect neurons), until a method for re-activation is determined. However, neuroscientists have been deeply skeptical—at the beginning of April, MIT announced that it had severed its subcontract with the company. In response to criticism, Nectome has scaled back its language, particularly its claims that it will “back up” the minds of any human in the near future. Despite the uncertainty, 25 people have already paid a $10,000 deposit to have their brains preserved by Netcome—which raises a number of ethico-legal concerns as are individuals essentially paying to join a waitlist for physician-assisted suicide.

In the realm of end-of-life planning (which Nectome essentially is, until “re-activation” is solved), this month a funeral parlor in China released a virtual reality experience of death. Through an avatar self, visitors can go through “having a seizure at work, a failed paramedic rescue, your heart stopping, and a final farewell to relatives from the afterlife.” By taking a tour through the funeral home and witnessing what will happen to your body, the funeral parlor argues that experiencing death in VR will help both the individual and family members with planning for death. Influenced by specific cultural constructs surrounding mortality, it is fascinating to think about how virtual platforms attempt to essentialize experiences of death.

This month has also seen a continuation of the debate surrounding an Italian scientist’s claims that a head transplant from a living person to a donor cadaver is “imminent.” It was recently announced that the proposed surgery will be performed in China, since no American or European institute will permit the operation. Currently, there are strong biomedical concerns with such a procedure: in head transplant studies using mice, very few have survived longer than 36 hours. As one bioethicist argues, “Some say the odds of success are so low that an attempt at a head transplant would amount to murder. But even if it were feasible, even if we could put a head and a body together and have a living human being at the end, it is only the beginning of the ethical questions about the procedure and the hybrid life created.” Similar to the Nectome controversy, while head transplants may currently sound like pure futurism, it opens up fascinating and critical questions for how a society deals with death and dying if certain individuals have the ability to defer, transfer, or alter the phenomenon.

The tagline of Altered Carbon (the Netflix series mentioned above), is “No Body Lives Forever.” The stories presented this month bring up thought-provoking phenomenological questions of how an individual’s consciousness would be altered if it were transferred into a different physical body, or if consciousness could be experienced independent of a body at all. After all, how much of our experience is filtered through physical sensation; how do the circumstances and activities of our lives become embodied? Can memory ever be divorced from the physical body? How is our very notion of consciousness socially constructed?

Finally (since it is Earth Day!) there are the environmental questions and concerns that arise when contemplating extended (or infinite) lifespans, or large consciousness-storing databases. (After all, in order to prevent a Twilight Zone-esque tragi-comic plot twist, wherein an expensive, perfectly preserved, “immortal” brain is destroyed through careless storage, brain upkeep would likely be resource-intensive endeavor). One neuroscientist said quipped last month, “Burdening future generations with our brain banks is just comically arrogant. Aren’t we leaving them with enough problems?” As technology in this area continues to develop (and with backing from wealthy donors, it likely will), there will be plenty more questions for social scientists of all disciplines to explore. With anthropology’s emphasis on seeking to understand human experiences, we will be a much-needed voice in this conversation.

 

On Pi Day (March 14, 2017), Stephen Hawking passed away at the age of 76. Among his countless insights about the universe, this quip is my favorite: “It would not be much of a universe if it wasn’t home to the people you love.”

New Review Technologies: An Announcement and Invitation by Emily Yates-Doerr

19 Avril 2018 - 12:00pm

This post announces the launch of a book. It is also an invitation.

The book, The Ethnographic Case: Telling Stories, Shaping Knowledge, was conceived as a Somatosphere curated series.[1] It is now being published by Mattering Press in two iterations. The first you can access now through this link; the second will be available in print in 2019.

The book is an experiment in academic publishing.[2] As an open-access press, Mattering Press is committed to making scholarship freely available. The open-access movement out of which Mattering Press emerged has done much to critically rethink strategies for the dissemination and circulation of academic thought.[3]

In discussions about the trappings of for-profit academic publication, somewhat less attention has been paid to the unpaid labor structures of peer review upon which the production process depends. Roy Grinkler and (my colleague) Niko Besnier recently issued a call for increased peer review citizenship. There may also be reasons to more radically rework peer review as we know it. Public intellectuals such as Danya Glabau and Michael Oman Reagan have noted how peer review’s demands of hidden, unaccountable labor can take a particular toll on the tenuously employed, who are often grappling with multiple forms of precarity at once. Though blind peer-review can be a tremendously valuable tool, it also risks upholding the secretive networks of the academy that privilege certain kinds of people and, with them, certain kinds of thought.

This brings us to our experiment and our invitation. With our online book we are testing out an emergent form of public peer review. We have adapted an open review template first designed by Ada: A Journal of Gender, New Media & Technology, which not only permits but encourages readers to chime in. This, then, is our invitation: we invite you to join our conversation, commenting on the chapters in places where you find yourself inspired to do so. Instructions and guidelines are here. (Please be generous and also keep in mind that these pieces were written as short essays and that the final paperback book will also feature short essays rather than full-length academic articles.)

The experiment complements a theoretical intervention made by the book. The 29 chapters explore case-making practices of ethnography. The themes and materials of each chapter diverge considerably, but put together they make evident a critical anthropological truth: form is not separable from content. Collectively the book advances the idea that knowledge does not lie ‘out there,’ simply waiting for discovery, but materializes through what is done with it– how it is cared for, how it is made to travel.

Our hope is that commentary adds another dimension to this truth for readers and authors alike. We imagine that readers will share sources, parallel conversations, or ideas and debates with which our authors and our audiences may not be familiar. We anticipate that we will all learn from seeing the sciences of peer review and subsequent editing in action.[4] It is our hope that public peer review can be network-building– strengthening relations between scholars who might not otherwise know that they have been shaping each other’s work. Also nice is that reviewers will be able to read, reflect, and respond to one another’s comments.

As an open-ended experiment, there are aspects (many still unimaginable) that may fail. Transparency is not always a good.[5] From a reviewer’s standpoint, junior scholars may not be in a sound position to comment on the work of senior scholars. (For this, and other reasons, we have left in place the possibility of making comments anonymous). From the writer’s standpoint, making public the often hastily written peer review comments on work that has sometimes taken the author decades to craft may feel like a violation. It can be embarrassing to read critique, even when this critique is well-conceived and kind; permitting this commentary to be public entails a kind of anti-ego that is too-rarely cultivated in intellectual circles. There is also a possibility of trolling and abuse, and as editors, we will unapologetically delete posts that we think undermine respectful discussion.

Aware of these risks, we nonetheless move forward in testing out a new peer reviewing modality. The availability of novel writing technologies alongside a call to rework entrenched power structures of scholarship necessitates that we at least begin to reevaluate some of the foundational practices through which academic knowledge is done.

Editors at Mattering Press have solicited some initial commentaries. Public peer review will run over the next few months (when we close the editing tool we will leave the comments open and visible in the online version of the book). Authors will then have time to rework their contributions. The second version of the book, due early next year, will be an old-fashioned paperback, for sale at a reasonable price (or downloadable from Mattering Press’s growing online collection), that you can underline and dog-ear and put on your own bookCase.

We hope you will participate.

____

Emily Yates-Doerr is an assistant professor of anthropology at Oregon State and the University of Amsterdam. She is on the editorial team of Somatosphere. Keeping with the spirit of this project, she has compiled a list of open access resources in Anthropology, available here.

 

[1] Somatosphere extends an open call to its readership to curate a series of your own design. Please be in touch with any member of the editorial collaborative to discuss ideas.

[2] As an anthropologist who works in Guatemala, I hesitate to use the term ‘experimental’ to describe my own endeavors. As Guatemalans know too-well, experiments are often a deeply colonial instrument that aims to render some people as the holders of knowledge and others as less-than-human subjects, to be experimented upon (see Ceron Valdes 2013). Insofar as I characterize my activities here as experimental, I hope to use ‘experiment’ in the way it has been used by Rheinberger or Fortun, connoting the openness of a unfinished system whose outcomes cannot be anticipated in advance. I am not convinced, however, that it’s a good term to use and would be open to finding other ways to speak and think about undertaking uncertain events and practices.

[3] Journals such as Cultural Anthropology, Hau: Journal of Ethnographic Theory, Medicine Anthropology Theory, and Limn have led the way with innovative responses. See, for example, this piece by Chris Kelty and this piece by Corsín Jiménez, Willinsky, Boyer, da Col and Golub. Somatosphere, which celebrates its 10th anniversary this year, has also been part of the conversation.

[4] See also Rick Wilk’s comments here on the undervalued craft of editing.

[5] For a broader discussion of transparency’s limitations in the context of academic publishing, see: Kowal, Emma, Todd Meyers, Eugene Raikhel, Peter Redfield, Sharon Abramowitz, Barbara Andersen, Eileen Moyer, Emily Yates-Doerr and Jenna Grant, 2015. “The Open Question.” Medicine Anthropology Theory. 2(1): 75-94

Laboratory capacity building and the open hardware movement by Louise Bezuidenhout

18 Avril 2018 - 7:57pm

Through my work in African laboratories I am regularly made aware of the challenging equipment shortages faced by research laboratories in many low/middle-income countries (LMICs). This extends far beyond the absence of “state-of-the-art” equipment and shiny, new models regularly produced by commercial companies. These shortages include the availability of what would normally be considered ubiquitous laboratory equipment – PCR machines, centrifuges, water purifiers and the other types of “basic” equipment that have come to characterise molecular biology laboratories.

In large part, these shortages of basic laboratory equipment are due to the way research in LMICs is funded. The project-specific grants that largely fund research in LMICs rarely make provision for the purchase of basic laboratory equipment, while research institutions are often unable to offer core funding for these necessary purchases. The absence of this basic equipment, however, has large implications. The inability to work at an optimal pace considerably slows down research and has knock-on implications for the education of undergraduate and postgraduate students.

Current discussions about addressing these equipment shortages also offer little hope for large-scale change. Most response strategies rely on the second-hand equipment donations or securing large collaborative grants or centre of excellence funding. Such approaches, while fraught with practical challenges, are also morally flawed by perpetuating cycles of dependence between LMICs and their high-income colleagues.

It is evident that new models for resourcing laboratories need to be identified. In particular, models are required that do not perpetuate dependencies or make LMIC laboratories the dumping ground for the old equipment of the Global North. The picture above shows a OpenPCR machine made using the designs freely available online. This is an example of a rapidly growing community dedicated to finding ways to making laboratory equipment in situ. In so doing, the Open Hardware community is beginning to challenge the hegemony of commercial, proprietary laboratory equipment. By creating an open, online community that freely shares designs and expertise, this community is demonstrating how a wide range of laboratory equipment can be made using crowdsourced knowledge, and locally sourced hardware. Such homemade equipment tends to be far cheaper than commercial alternatives, and repairable using locally-sourced hardware.

The successes of the Open Hardware community must challenge the way we view laboratories in the Global South – both in research as well as diagnostics. It is possible that the growing Open Hardware resources could offer another means of capacity building – in particular, one that could break the cycles of resource dependency that characterise many LMIC laboratories. While there is a small, but growing, interest in Open Hardware amongst LMIC scientists, more needs to be done to support their efforts. Most importantly, Open Hardware events such as lab equipment hackathons are necessary to familiarise LMIC scientists with the possibilities inherent in the Open Hardware movement.

Nonetheless, enthusiasm must also be tempered with caution, and assuming that Open Hardware will be the panacea to solve the current resource problems is simplistic. Evidence from other fields of Open Science, particularly Free and Open Source Software, highlight the wide range of social issues that dissuade LMIC scientists from making use of free resources. In particular, we need to uncover what currently curtails the exercise of agency and control over research and diagnostic infrastructures.

 

Louise Bezuidenhout is a research fellow at the Institute for Science, Innovation and Society at the University of Oxford.  Her research focuses on the development of stable and robust scientific research infrastructures in low/middle-income countries.  Her current work covers a range of topics, including understanding creative ways in which LMIC scientists overcome resource limitations in their reserach environments.  She is currently collaborating on a number of interdisciplinary projects in the UK, Sudan, Zimbabwe and South Africa.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

Photo credit: Robert Goodier

ReEBOV: Developing an Ebola rapid diagnostic test at research ground zero by Imogen Bevan

16 Avril 2018 - 10:31pm

Expired ReEBOV tests in a hospital laboratory in Sierra Leone. Photograph by Ann Kelly

In June 2015, as Sierra Leone and Guinea was experiencing new surges in clusters of Ebola virus cases, Nature published a news article asking why an inexpensive test that “could save lives” was not being deployed to the field. Indeed, while it seemed obvious to many policy makers and health experts that Ebola rapid diagnostic tests were urgently needed, the question of how these objects should be implemented and used ‘in the field’ remained uncertain.

The test in question – dubbed the “ReEBOV” by its developers – is an in vitro test that identifies Ebola virus by detecting the presence of VP40 antigen in a sample of patient’s blood. The device is the product of a collaboration between industry and academic scientists and promised to generate results in a third of the time required by the gold standard reverse transcription polymerase chain reaction method. The US National Institutes of Health and Bill and Melinda Gates and Paul Allen Family Foundations provided generous financial support. An expression of interest was submitted by ReEBOV’s manufacturers to the WHO in October 2014. In February 2015, the testing device was cleared through the WHO’s Emergency Use Assessment and Listing (EUAL) procedure – an accelerated assessment mechanism established to provide international guidance on the “quality, safety and performance of certain In Vitro Diagnostics (IVDs)” in the context of a Public Health Emergency of International Concern. In February 2015, ReEBOV became the first approved commercial rapid antigen test on the market.

The origins of the ReEBOV device can be located in a research laboratory in Kenema Government Hospital, Sierra Leone, at a time before the Kenema district became an epicentre of the Ebola outbreak. The Kenema lab played a pivotal role in the Ebola outbreak as a hub for processing infected patient samples and is often cited as the “ground zero for research” in Sierra Leone. The laboratory hosted an international network of people and institutions – which included Tulane University, Corgenix, and Zalgen Labs – brought together under the umbrella of the Viral Haemorrhagic Fever Consortium (VHFC). The consortium was in the process of developing a rapid diagnostic test for Lassa fever at the time of the Ebola outbreak. When the WHO announced a call to manufacturers to produce a rapid Ebola test, the network’s researchers and developers reacted quickly – drawing on their financial resources, their relationships with local authorities, their existing diagnostic templates and their access to supplies of infected patient blood to produce an Ebola rapid test.

If measured in terms of the speed of development and regulatory approval then ReEBOV provides an unparalleled example of success in emergency R&D. Speed was certainly a key concern of the international actors behind the establishment of the EUAL process, and the source of ReEBOV’s rapid development can be located in the VHFC’s “rooted collaboration” (Yozwiak et al., 2016). ReEBOV was built on the back of an existing network of technologies, funding, institutions and people. But once we look at deployment and use, the ‘success’ of this device becomes more questionable.

There is little evidence that ReEBOV was clinically deployed in West African outside of validation and field trials, nor that it played a significant role in curbing the epidemic. In fact, by the time ReEBOV and other rapid diagnostic tests had been approved and become available, the attention of public health experts was firmly focused on the opportunities that new high-speed bench-top PCR machines presented for highly accurate testing in treatment centres at a district level. The accuracy of RDTs like ReEBOV was considered too low, and the infrastructure requirements (personal protective clothing, complex algorithms, waste disposal, training) too high to make them a viable part of the outbreak response. Caught between the irreconcilable demands for high specificity and high sensitivity, the ReEBOV was classed too risky a device to mass deploy. The ReEBOV could not become a tool in political projects to certify countries as ‘Ebola-free’ because of its risk of producing false positives, while even the slightest risk of producing false negatives and returning infected patients to their communities was unthinkable from a public health perspective.

ReEBOV’s story leads us to ask what counts as success for a device in an emergency context and to wonder what the post-emergency future of such rapidly developed devices will look like.

 

Imogen Bevan is a PhD candidate in social anthropology at the University of Edinburgh, and research assistant on ‘Investigating the Design and Use of Diagnostic Devices in Global Health’. Her research interests include anthropology of global health, anthropology of food and drugs, and material culture studies. She has published research on tobacco and e-cigarette use, and currently explores the role of sugar in social relationships in urban Scotland.

Alice Street is a Senior Lecturer in Social Anthropology at the University of Edinburgh, where she currently holds a European Research Council Starting Grant for ‘Investigating the Design and Use of Diagnostic Devices in Global Health’ (DiaDev). Her research focuses on hospital ethnography, health systems research, global health interventions and medical innovation. She has carried out ethnographic research in Papua New Guinea and India and is the author of Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital.

Ann H. Kelly is a Senior Lecturer in the Department of Global Health and Social Medicine, King’s College London and the Co-Deputy Director of the King’s Global Health Institute. Her ethnographic work focuses on the socio-material practices of global health research and innovation in Sub-Saharan Africa, recent examples of which have been published in Cultural Anthropology, Social Studies of Science, Social Science and Medicine and Visual Anthropology. She is currently collaborating on a number of transdisciplinary initiatives including an NIHR Research Unit on System Strengthening in Sub-Saharan Africa (ASSET) and an ERC-funded project investigating the Design and Use of Diagnostic Devices in Global Health (DiaDev), lead by Alice Street at the University of Edinburgh.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

Reference

Yozwiak, N. L., Happi, C. T., Grant, D. S., Schieffelin, J. S., Garry, R. F., Sabeti, P. C., & Andersen, K. G. (2016). Roots, Not Parachutes: Research Collaborations Combat Outbreaks. Cell, 166(1), 5–8. https://doi.org/10.1016/j.cell.2016.06.029

 

Global Health Diagnostics: Workshop Summary by Shona Lee

11 Avril 2018 - 3:23pm

On January 17th, 2018, participants from the UK, Europe, and India gathered in Edinburgh for “Investigating Diagnostic Devices in Global Health”, a workshop that also marked the launch of the ERC funded DiaDev project. Hosted by the DiaDev team, Alice Street, Ann Kelly, Nanda Kannuri and Eva Vernooij, the multi-disciplinary workshop invited short presentations from scholars, practitioners, and students working in the field of diagnostics in global health.

For critical global health researchers, the DiaDev project signposts the centrality of diagnostics to technology-oriented global health interventions today. For others, who have worked in global health and diagnostics for decades, it marks a gear change in the role of technology in diagnosis and the commodification of care. The careers and experiences of the participants span a transformative period in global health, many beginning their fieldwork when hospital laboratories were so poorly resourced that practicing medicine was less a matter of identifying and confirming disease using tests, than of aligning symptoms with medication. Since then, landscapes of care in the Global South have changed dramatically. With the development and expansion of portable lateral flow Rapid Diagnostic Tests (RDTs), which work in a similar way to over-the-counter pregnancy tests, there has been increased interest in funding diagnostics and increasing the reach of diagnostic tools into village and community settings. In response to this, the DiaDev workshop sought to identify and address a suite of questions. Principally, it enquired into how this new generation of testing devices is transforming health systems, and how a focus on diagnostics shapes priorities in global health. The workshop aimed to identify the critical questions posed by this emerging field, and how scholars from the social sciences and humanities can and should study the emerging diagnostic paradigm in global health.

Participants were invited to present an image of choice to illustrate their key points and encouraged to raise the important questions this posed for their own research and for the field. These ranged from the implementation of sophisticated and relatively expensive multiplex platforms such as GeneXpert for largescale interventions, to stripped back, simplistic rapid diagnostics, Guthrie cards, and cheap open source PCR machines.

The development of tools in laboratory workbenches in the Global North, and their transposal into markedly different locales was a recurrent feature of many presentations. The unanticipated complexities of introducing sophisticated diagnostic multiplex platforms such as GeneXpert into remote settings, where insufficient funding or technical support to sustain their integration drew attention to the adaptability of diagnostics across spaces. Both Prof Ian Harper and Dr Emma Harding-Esch pointed out the need for specific testing panels at community-level for effective active screening, but questioned their utility outside of vertically funded programmes and research projects where they could not feasibly circumvent infrastructural gaps in the ways that more mobile, rapid diagnostic tests (RDTs) can. Dr Louise Bezuidenhout’s presentation on the openPCR machine highlighted the locality and mutability of diagnostic technologies, and the need for a comparative discussion on developing equipment for the Global South by the Global South.

The capability of RDTs for plugging these gaps were contested by participants, who noted their limited capacity to innovate around structural paucity. While affordable and nimble, these accessible features are frequently rendered inapt, as test results conflict with further follow-up tests (Shona Lee) or clinical expertise (Fred Martineau) that can have profound effects on public and professional trust in diagnostic technologies. Even so, the enthusiasm for developing rapid test kits is palpable and frequently un-checked. Rebekah Thompson described concerted efforts of international research institutes to design a rapid test for zoonotic porcine cysticercosis, and questioned the practical utility of a test with no logical implementation point along pork value chains that frequently circumvent regulatory points of contact. The nature of the infrastructures and the expertise built into diagnostics therefore became a key focus of discussion.

The practical and ethical implications and meanings of diagnoses were emphasised by Ilana Löwy in her account of how cheap obstetric echography machines in Brazil facilitate the first meeting and socialisation of the baby in a society where abortion is forbidden. Here, the results from the ultrasound device poses uncomfortable dilemmas; “If you see something wrong, what do you do next?” Steve Sturdy’s talk pressed further the social effects of knowledge produced by diagnostics. His presentation on the neonatal heel-prick ‘Guthrie test’ for Phenylketonuria (PKU), and increasing concern over large collections of biological samples necessitates critical reflection on ethical and legal considerations. Both Sturdy and Löwy’s examples presented the workshop with the often overlooked but crucial questions; What social, ethical, and legal effects do results have? And can a diagnosis do more harm than good?

The workshop was accompanied by a public keynote lecture, delivered by Dr Clare Chandler, on “social science perspectives on diagnostics and antimicrobial resistance”. Drawing from her long term research on malaria programmes in East Africa and more recent research on the anthropology of antimicrobial resistance (AMR), Chandler showed that in places where care has been stripped down to the provision of medicine, patients may experience diagnostics as reducing access to care. Like many of the workshop presentations, Dr Chandler noted that diagnostics are often regarded as replacing infrastructure. However, rather than being simple and mobile technologies circumventing infrastructural deficits, in many cases we find they require more infrastructure (resources, supply chains, community health workers, the information required to make it work). Building on her finding that diagnostic devices make the need for health infrastructure more, rather than less, visible, Chandler’s current research project shifts focus to an enquiry antimicrobials as infrastructure, and seeks to go beyond the localisation of problems and solutions for AMR in the individual.

Following Clare Chandler’s lecture, the event concluded with a final round of talks reflecting the structure of DiaDev’s three project streams, with Dr Ann Kelly, Dr Nanda Kishore Kannuri, and Dr Alice Street presenting on diagnostics in the contexts of emergency, integration, and elimination, respectively. Based on these presentations and the questions raised throughout the workshop, participants then arranged themselves into break-out groups for each stream and discussions about the key issues and research questions for future exploration. From these and prior discussions, it was possible to deduce several thematic areas for future enquiry:

  • The location and ‘spacialisation’ of diagnostics, their positionality in socio-technical systems, and how diagnostics transform spaces of care, including the relationships people build around these spaces.
  • The unpredictable and destabilising effects of introducing new diagnostics on health systems across different settings, in terms of public trust in diagnostic and referral systems, or health workers’ trust in the performance and reliability of diagnostic tests.
  • The expertise built into diagnostics, and the value of the information produced by them across settings. This included assumptions surrounding authoritative claims on biomedical knowledge, and epidemiological landscapes of evidence.
  • The ethical and regulatory implications of test results and the knowledge produced in terms of prognosis, concerning what action is to be taken from certain diagnoses.

Many of the short presentations on diagnostic devices, along with several new entries, will appear as part of this series, and will later be collected into a diagnostic catalogue.

 

Shona Jane Lee is a PhD candidate at the University of Edinburg, and a member of the multidisciplinary Investigating Networks of Zoonosis Innovations (INZI) research group at the Centre of African Studies. She holds an ESRC AQM studentship for her project on the socio-technical systems of disease control, focussing on novel technological interventions for sleeping sickness control and elimination in Uganda.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

Curious Affection by Eben Kirksey

10 Avril 2018 - 4:54pm

A gigantic balloon—pink and glistening—billows up overhead. It is like a womb, or a tumor, filling the huge atrium at the entrance to Patricia Piccinini’s biggest show to date: Curious Affection at the Gallery of Modern Art (GOMA), in Australia. I meet Patricia under this sculpture and she escorts me into a dark room where there is a field of three thousand white fleshy stalks. The floor underneath is spongy. As we walk the stalks move, in response to our footsteps. It is like a mycelial network, sensing our presence in a forest. The stalks are reminiscent of Ghost Pipe (Monotropa uniflora), a white plant without chlorophyll that is parasitic—deriving its energy from fungi that form mycorrhizal networks with trees. But, rather than having clear flowers with petals, fleshy bulbous organs are swaying on their stems. The organs look like they are ripe for harvesting. Perhaps they are kidneys or livers, ready for transplantation into humans. Or maybe eyeballs are enclosed inside the nodes of flesh.

A pair of human legs is marching nearby, with one foot planted firmly in the earth, and the other kicked up towards the sky. This pair of legs has no head, no body—but a hairy orifice in the mid-section, where there is a groin of sorts. A small humanoid creature, with big curious eyes, a tiny penis, and long brown wisps of body hair—a pollinator, Patricia says, is climbing up the side of the sculpture, reaching into the orifice. These sculptures embody fecundity. Pointing to droopy swelling below the hairy hole, she says that the marching legs appear to be pregnant—perhaps with a child or an egg inside.

Piccinini’s world involves a proliferation of life. Katydids and crickets call in the background. A thunderous noise booms from around the hall. In this emergent ecosystem, we are left to speculate about the roles of the different organisms. Why is the small humanoid creature interested in the hairy cavity of the marching legs? When we aren’t looking, is the humanoid also running around this field of ghost plants, stealing the organs to eat before the harvest? Where is the energy coming from to drive this system? Are there subterranean deposits of organic matter, or perhaps toxic waste? Donna Haraway insists “Piccinini’s objects are replete with narrative speculative fabulation…Her visual and sculptural art is about worlding—that is, ‘naturaltechnical’ worlds are at stake, worlds needy for care and response, worlds full of unsettling but oddly familiar critters who turn out to be simultaneously near-kin and alien colonists” (Haraway, 2014: 242).

Humans clearly played a role in fashioning the emergent world of Curious Affection, but there are also other unruly agents on the loose in this heterogeneous field of desires. Brian Rotman’s writing comes to mind. Human nature “is melting,” insists Rotman, “running off ­­in new directions.” We have become entangled in an “open-ended project of mediated self-construction with shifting boundaries and no identifiable telos,” an assemblage of “bio-techno-cultural hybrids.” We are becoming beside ourselves with glee and dissolution, intermittently present to ourselves, becoming multiple and parallel, in assemblages of para-selves (Rotman, 2008: 103-4). The marching legs, in this field of fleshy organs, look human—yet, don’t seem to be driven by conscious purpose. The organs growing on the plants might be part of a farm, making parts to refurbish hybrid human biotech bodies. Or they might be escaped products of transbiology, exploding with their own prolific life.

Transbiology, in a technical sense, means the splicing genes or DNA sequences from one species to another. This splicing has the potential to change the phenotype, or outward appearance, of an organism. According to Sarah Franklin, transbiology “is not just about new mixtures, playful recombinations of parts or new assemblages: it is fundamentally defined by the effort to differentiate these dirty descent lines into functional, safe and marketable human biology” (Franklin, 2006: 176). Piccinini has opened up an opportunity to encounter wild and unruly products of transbiology. She also invites us to imagine safe and functional more-than-human hybrids.

Patricia Piccinini, “Kindred,” 2018.

A fully formed adult, Kindred, is sitting among the fleshy plants—in a clearing—with two youngsters clinging to her body. She is completely naked, comfortably resting on the ground. The large head, shaggy orange hair on her arms, and prehensile thumbs on her feet make this woman clearly identifiable as an orangutan-human hybrid. Her body is maternal—with small drooping breasts, and love handles sagging on her back—but formidable. The baby crawling up the hair on her back appears to be fully human, and she also cradles an infant with a simian face to her breast. Patricia insists that these babies make the mother vulnerable. She could not run away from a predator, or a threatening human. She would need to stand her ground and fight.

Kindred illustrates the possibilities of gene editing with tools like CRISPR-Cas9 says Patricia. She asks: How do we relate to difference? Is there room for things and beings that are different from us? Can we approach them with a sense of wonder?

The calm, pensive, gaze of the orangutan-woman invites speculation about subjectivity and mental interiority. Patricia intimates that she would like to be more like an orangutan mother herself. The orangutan, for her, is a figure of an ultimate nurturer since she will keep kids close for six years. Patricia insists that this sculpture is not anthropomorphic—illustrating how animals are like us—but it instead embodies her desire to be more like another species. The human lips, and hint of an Adam’s apple, suggest that Kindred might be able to talk. Would she say words of wisdom if she opened her mouth? Can the post-human speak?

Patricia Piccinini, “Teenage Metamorphosis,” 2017.

Hyper-serious post-human realism bleeds into the surreal as one continues to stroll through the field of fleshy stalks. A fat porcine baby is lounging on a beach towel, with a copy of Kafka’s Metamorphosis and a 1980s cassette radio boom box beside him. The boy’s back has symmetrical tread marks, like the sole of a Nike running shoe. A slight woman with frizzy hair and a plain dress holds the shoe-boy, as a baby, up on a pedestal. The woman is wearing ornate cowboy boots.

As we walk up a ramp, past a boot with hair spilling out of it on the wall, Patricia says that she finds ornate boots on men attractive. These icons of Western masculinity, seem a little queer.

A beautiful male body, with sculpted abs, is growing like a tree or a succulent plant—perched on a platform near the ceiling of the gallery. Of all the things she has created, Patricia says that this one makes her the most uncomfortable. The body seems to be stretching—leaning off to one side. Strange fruit, helmeted heads, are dripping off of the shoulder—perhaps ready to be harvested. An explosion of extra elbows emerges from the other side. Each of the helmets is a slightly different form—some of the visors are oblong, while others are skinny slits. The helmeted heads seem to be growing in response to slightly different environmental conditions. Maybe some are getting more sunlight than others. The elbows suggest that a riot of feminine arms are about to burst out of the side of the torso. The body is propped up on an upholstered tripod, with three feet—clad in motorcycle boots—firmly planting it in the ground.

This outburst of fecundity, which she calls Hartwood, is a big step in her practice, Patricia says. Co-mingled life explodes, nothing stays in its place. An eagle with huge wings outstretched, is perched atop the Hartwood tree. This particular eagle species, the Wedge-Tail (Aquila audax), is the largest bird of prey in Australia. It is an icon of adaptation, since it can be seen wheeling between skyscrapers.

Patricia Piccini, The Eagle-Egg Man, 2018.

Peering down from the platform, Patricia points out a wall of mushroom-bats, hanging from banisters. The bats hang along a wall which encloses a grotto where the Eagle Egg Men sit hunched around clutches of eggs. Tibetan bells sound solemnly. The figures have strong noses, sharply defined masculine brows, defined shoulder muscles, lats, and upper arms. Their flesh is enfolded around the eggs, forming living nests. White eggs of different shapes and sizes—like a jumble of potatoes—rest inside of the flesh nests. Their ginger hair is tussled. One is looking down, brooding over a large clutch. Another, with a single egg in a involuted pucker of a nest, gazes wistfully up at the sky. The third stares pensively off into space. The bodies are masculine, but maternal. Nurturing with their very flesh. Ornate cowboy boots, outgrowths of their bodies, help stabilize them on the ground.

Are these queer trans-human figures nurturing their own kind, or are they caring for what Donna Haraway calls odd kin? If the Wedge-Tail Eagle is a figure of adaptation and survival, perhaps these fabulated female-men are caring for eggs of other species that are radically declining in an era marked by an explosion of techno-mechanical-masculine hybridity? The jumble of differently shaped eggs invokes the legacy of DDT—the pesticide that began driving many eagles towards extinction as it accumulated in the bodies of apex predators, producing fragile, thin-shelled eggs. The bodies of the Eagle Egg Men, wrapped around the eggs in fleshy and wet practices of care, illustrate a singular purpose, a clear telos—in sharp contrast to the wild products of synthetic biology marching around the field with dissolution and glee.

The multitude of brown and black bodies, hanging upside down above the egg men, suggest to me a lively assemblage of seed-bombs ready to fan out across a human dominated landscape. None of the bats have clearly defined faces, but have bulbous heads—like a mushroom cap. Some grip the banisters with a single, slightly human hand.   Patricia said that huge fruit bats fly over her house every evening at dusk in Melbourne and inspired her to make this piece. Fruit bats are convivial members of Australian cities. They bring a cosmopolitical kiss of life to urban ecosystems (Rose, 2012). In Patricia’s back yard, sometimes the fruit bats take a bite of pear, and then drop it in the garden where it explodes and rots.

Fungi give nutrients to trees, moving minerals from rocks into ecosystems through micro-filaments, Patricia notes, taking sugar back for themselves. In the speculative world of Piccinini, these Mushroom Bats might be able to digest plastic, steel, and concrete. These emergent forms of life might have evolved new biochemical pathways that enable them to adapt—to invade an occupy worlds designed with the well-being of humans in mind. If rot and decay are generative life-giving processes, the key to reciprocity in the food web (Radin, 2017), urban architectures have conventionally been built to arrest life—preventing growth, change, collapse, and rejuvenation (cf. DeSilvey, 2017: 9). On a planetary scale, industrial capitalism is producing what Deborah Bird Rose calls “double death,” an uncoupling of life and death which diminishes death’s capacity to turn dying back toward the living (Rose, 2011). I see promising futures in Piccinini’s Mushroom Bats. Like actual fruit bats, lively and unruly parts of contemporary Australian urban ecologies, these flying fungal fabulations might help bring the kiss of life to barren and desolate architectures. These creatures might help turn sterile cities into lively places. They contain the promise of reanimating dynamic relationships—with gifts of energy, life, and matter flowing across generations. Legions of Mushroom Bats could catalyze a global détournement—rerouting the planetary process of double death, back towards life.

Patricia Piccini, The Struggle, 2017.

Around the corner from the grotto, where the Eagle Egg Men are flanked by legions of Mushroom Bats, technology has come alive. A deer like Vespa motor scooter is under attack, with a predatory tiger of a motorcycle biting its neck. Technology mimicking nature, come alive. A mimetic doubling of animals and machines, where the machine no longer is bound by “a strict adherence to rational, economical rules” (Canguilhem, 1991: 56). A massive video looms overhead, depicting a breathing landscape of hairy flesh. A pucker emerges and a fleshy form sprouts like a seedling. The fleshy protuberance begins to wiggle. Four human legs sprout and the flesh begins to dance around, spinning in the hole. Gleefully, becoming beside itself, the four legged creature then pops out, standing. Two legs are standing on the ground while the other two waives about in the air like hands. Eyes and a mouth appear in the jiggling belly, as it tries out some yoga poses. It begins to crouch and extend—moving at hyper speed. Then it launches off into space.

Around the corner a sunset appears in the distance, as a backdrop to a diorama. Butthole Penguins, fleshy lumps with a single orifice and Mohawk hairdos, squat on their haunches next to a trio of Gazellements—flesh helmets trotting through the gallery on a pair of gazelle legs. Lions, with rubber tires growing around their manes as protective helmets, sit with their eyes squeezed shut—looking constipated. Lightning flashes in the distance. Asphalt is broken up by emergent native plants that are proliferating alongside surviving forms of animal flesh.

When rhinos and wombats begin to die, when their existence as species is threatened, we are compelled to intervene, Patricia says. As she talks, she brushes up against one of the most important existential questions of our era, first posed by Matthew Chrulew: “How should we love in a time of extinction?” (Chrulew, 2011) This final room illustrates a limit in the human capacity to love and care. Rather than contain a room full of endangered animals, carefully preserved, the diorama is host to emergent forms of wild life (Franklin, 2003; Collard, 2014). Trans-biology has escaped the laboratory to form ecological communities, social relationships, and romantic bonds without reference to the human.

Patricia Piccinini, “The Couple,” 2018.

The Couple, a pair of hairy monsters with long claws, are tenderly cuddling in an RV trailer, parked in the room with the Butthole Penguins, Gazellements, and Tire Lions. They are naked, under white sheets. A half-finished liquid meal is on the table, next to a biology text book illustrating hair follicles inside of a cell. Patricia says that Frankenstein was a bad parent. When his offspring found love with a blind person, the scientist forbade the relationship. The monster went crazy when he was denied a mate, killing Dr. Frankenstein in the end. The Couple illustrates a different possible future for transbiology. The male monster is asleep, gently resting his head on his lover’s chest. The female cradles his head with her clawed hand, staring pensively at the ceiling. She is protecting him, caring for him, while he gets some much needed sleep. He is strong, beautiful, but vulnerable.

Perhaps this couple is on the run, Patricia says. Maybe they are living on the outskirts of human society. Or, maybe they have found a trailer park, to live alongside marginalized people. Piccinini has captured them in an intimate moment, in a cocoon of sorts, where they have created a safe space beyond the social, historical, political, and ecological forces assailing them. Perhaps the couple has just made love. Together in bed, they embrace ideas of fertility. These monsters are fully capable of reproducing without human assistance. We cannot control their destiny.

 

Eben Kirksey studies the political dimensions of imagination as well as the interplay of natural and cultural history.  Duke University Press has published his two books—Freedom in Entangled Worlds (2012) and Emergent Ecologies (2015)—as well as one edited collection: The Multispecies Salon (2014).  Currently he is Associate Professor of Anthropology at Deakin University. 

 

References

Collard, Rosemary-Claire. “Putting Animals Back Together, Taking Commodities Apart.” Annals of the Association of American Geographers 104 (2014): 151–65.

Franklin, Sarah. “Ethical Biocapital.” In Remaking Life and Death: Toward an Anthropology of the Biosciences, edited by Sarah Franklin and Margaret Lock, 97–128. Santa Fe: School of American Research Press, 2003.

Franklin, Sarah. “Cyborg Embryo: Our Path to Transbiology.” Theory Culture & Society 23 (2006): 167–87.

Haraway, Donna. “Speculative Fabulations for Technoculture’s Generations: Taking Care of Unexpected Country.” In The Multispecies Salon, edited by Eben Kirksey, 242–61. Durham: Duke University Press, 2014.

Canguilhem, Gorges. “Machine and Organism.” In Incorporations, edited by Mark Cohen and Randall Cherry. New York: Zone Books, 1991.

Chrulew, Matthew. “Managing Love and Death at the Zoo: The Biopolitics of Endangered Species Preservation.” Australian Humanities Review 50 (May 2011): 137–57.

Deborah Bird Rose. “Cosmopolitics: The Kiss of Life.” New Formations 76 (2012): 101–13.

Desilvey, Caitlin. Curated Decay. Durham: Duke University Press, 2017.

Radin, Joanna. “Rot.” The Multispecies Salon Website (blog), December 2, 2014. http://www.multispecies-salon.org/rot/.

Rose, Deborah Bird. “Wild Dog Dreaming: Love and Extinction.” Wild Dog Dreaming: Love and Extinction, 2011, 1–169.

Rotman, Brian. Becoming Beside Ourselves: The Alphabet, Ghosts, and Distributed Human Being. Durham: Duke University Press, 2008.

The Testing Revolution: Investigating Diagnostic Devices in Global Health by Alice Street

9 Avril 2018 - 3:32pm

Image by Alice Street in collaboration with Jennifer Littlejohn.

The origins of laboratory medicine are often traced to the establishment of a small clinical laboratory in Guy’s Hospital, London, in 1828. Here, in a small side-room, medical students used sterilisers, incubators and microscopes to identify bacteriological organisms in biological samples taken from the patients in the ward next door. In this simple removal of bodily fluid from the patient’s body and its transfer to a laboratory bench a few metres away, it is possible to see the ‘laboratory revolution’ that transformed European medicine in the mid-nineteenth century (Cunningham and Wiliams, 1992). With the rise of the laboratory, the site of production of medical knowledge and authority shifted from the hospital bed to the laboratory bench. Medical scientists and students identified diseases within disinterred organs, tissues and fluids, rather than the patient body, laboratory technology came to dominate medical practice, and the biological and experimental sciences exerted a new supremacy over clinical medicine.

Yet, in 2003 when I was a PhD student in social anthropology setting off to study the practice of biomedicine in Papua New Guinea’s public hospitals and clinics, the story of laboratory medicine told by European medical historians provided little insight to the everyday clinical work of doctors, nurses, or indeed laboratory technicians. As the Acting CEO of a provincial hospital explained to me on my first day of fieldwork there, ‘we don’t have all the resources to make diagnoses on hand… final diagnoses are only made when the patient leaves’. The hospital did have a small pathology unit but chronic failings in the supply of reagents, an unreliable electricity supply, and a lack of appropriate equipment meant doctors rarely trusted its test results, preferring to rely on their clinical experience in a pragmatic ethic of ‘doing what we can’ for patients who they often referred to as ‘generally sick’. Doctors had been trained in clinical pathology, and the medical textbooks they studied consistently referred them to laboratory tests as the gold standard of medical knowledge. Equipped with a robust training in laboratory medicine, they were nonetheless forced to practice it without a functioning laboratory, leading to widespread frustration and poor morale (Street, 2014).

In the rural clinics where I carried out additional research, the contrast with archetypal accounts of laboratory medicine by European medical historians was even more stark. Here patients were not so much diagnosed as bureaucratically processed (see also Harper, 2014). Community health workers used ‘standard treatment books’ to align patients’ symptoms with the medicines available. Most patients who presented with fever-based symptoms or a persistent cough were given antibiotics and antimalarials. Patients were rarely ‘given’ a diagnosis, instead health workers handed out drugs and recorded a tally of disease incidence on the daily record sheet.

At the time there was a lot of excitement about ARVs being made available in Papua New Guinea, and a push by international donors to improve access to tuberculosis drugs through the WHO’s approved DOTS programme. But there was little policy discussion of the country’s limited laboratory capacity. The laboratory in the hospital where I worked was the source of much disparagement among the growing number of international medical researchers carrying out clinical trials in the hospital wards. But when I suggested to one medical researcher from Australia that improvements in the hospital’s clinical pathology infrastructure could potentially assuage emerging tensions with the hospital staff, the response was disdain: ‘They will never have a working laboratory here. It is impossible because of the climate and lack of power infrastructure’.

For much of the 2000s, the practice of laboratory medicine without a laboratory was accepted by the international community in Papua New Guinea and elsewhere as simply the way care is delivered in a resource-limited hospital. The lack of rural laboratory services and the persistence of treatment-focused empirical diagnosis at a primary care level barely registered a response from national policy makers or international donors and organisations.

But by the end of the decade, when I returned to Papua New Guinea to begin new fieldwork with a provincial health management team, much had changed. The Global Fund was providing support for the establishment of sputum microscopy for tuberculosis at a district level and had awarded funding for the deployment of 6 million malaria rapid diagnostic tests to accompany a new malaria treatment protocol in the country. The consultancy arm of a local university had been given the Global Fund contract to roll out training in the use of malaria rapid diagnostic tests across the national health workforce. The same university had built a new training laboratory next door to the hospital where I had previously worked, and was offering to host its laboratory services. In 2015, when I returned again for a short follow-up trip, I was able to observe village health volunteers using malaria RDTs to diagnose and treat local patients in their homes.

Somewhere between my first trip to PNG in 2003 and my last one in 2015, normative assumptions about what constituted basic care in resource-limited settings had shifted. It was no longer deemed acceptable by international observers that patients in lower income countries be treated solely based on symptoms. In hospitals and urban centres, where it was previously an accepted inevitability that laboratories do not work, there was now international assistance for laboratory strengthening. In primary healthcare, the over-prescription of antimalarials and antibiotics that followed from presumptive diagnosis was abhorred as economically inefficient and fueling antimicrobial resistance. Access to laboratory quality testing that could provide unmediated access to the pathogens and microorganisms causing treatable diseases had become a global health priority.

This shift in ideas about what is necessary and what is possible in resource-limited settings was enabled, in part, by the emergence of a new generation of diagnostic tests and devices. These included point of care tests, like rapid bench-top PCR devices that could be deployed in hospital or district laboratories and portable, easy-to-use antigen-based rapid diagnostic tests for use in rural clinics, such as those incorporated into the new malaria treatment protocol in Papua New Guinea.

The attention that organisations like the WHO now give to diagnostic capacity and the mobilization of resources for diagnostic innovation by philanthropic foundations like the Bill and Melinda Gates Foundation has vastly improved the availability of testing technologies in countries like Papua New Guinea, from bench-top GeneXpert and CD4 machines donated to hospital laboratories, to rapid diagnostic tests for malaria and dengue deployed in rural clinics. But these are individual testing devices, not laboratories. The construction of a rural laboratory infrastructure is still widely conceived as impossible in lower income countries that lack a universal road network, communication systems or electrification infrastructure. The laboratory revolution in 19th century Europe was characterized by the establishment of laboratory spaces for training, research and clinical testing, and by the development of new laboratory techniques, protocols and assays that were made publicly available through academic publication (of course it also reproduced class inequalities, introduced disciplinary hierarchies and participated in racialized medicine). In contrast, the testing revolution in 21st century global health involves the development of closed devices that are protected by intellectual property, circulate as commodities, and feature sample-in-result-out systems that are designed to by-pass untrusted local expertise (Street, 2018).

What has changed with the arrival of a device-focused testing revolution in global health? How are a new generation of diagnostic tests transforming health systems? And what can the rise of diagnostics tell us about changing priorities, values, and relationships in global health? These are the key questions that inspired us to start DiaDev, an European Research Council funded research project investigating the design and use of diagnostic devices in global health. Drawing on novel conceptual and methodological tools from social anthropology, it investigates the social, cultural and technical processes involved in developing, deploying and using diagnostic devices in resource-limited settings. Through the telling of diagnostic stories, the mapping of diagnostic infrastructures, and collaborations with stakeholders, DiaDev seeks to identity the lessons that can be drawn from the successes and failures of diagnostic devices in the places where they are developed and deployed.

In January 2018, the DiaDev team convened an interdisciplinary workshop to explore initial ideas and conceptual frameworks for tackling these questions across the social sciences and humanities. Below I outline three ideas that emerged in part from these discussions for what the critical study of global health diagnostics might look like.

1.From diagnosis to diagnostics

At the heart of the DiaDev project are stories of individual diagnostic devices, such as those for Ebola virus disease, malaria, onchocerciasis, or antimicrobial resistance, and what they tell us about the opportunities and challenges that accompany technological innovation in resource-limited health settings. Anthropologists are frequently brought into operational research on technology-focused interventions at the point of implementation and are expected to translate the experiences of end-users for policy audiences. But device biographies neither begin nor end in the clinic. In fact, implementation is often prefigured in the market research and imaginings of end-use scenarios that developers build into device design, whether in terms of assumptions about the best way to extract a sample, what temperature a device needs to be stored at, or how it will be repaired or disposed of. What people do with diagnostic devices, including the adaptations needed to make machines work in a particular site, and what people do with the information provided by a device, also demand to be understood as forms of design work or hidden innovation.

Diagnostic devices often have aesthetic and material qualities that give them the appearance of finished, self-contained, stable objects (e.g. see the pieces by Lee and Bevan in this series). DiaDev seeks to disrupt this process of closure and reification by focusing on the device as a steadfastly unstable assemblage of material components, relationships, and practices. Diagnostic devices are not simply developed in one site and then used in another: they travel through research laboratories, manufacturing plants, investment company board rooms, regulatory bodies, clinics, and ministries of health in open-ended and unpredictable biographical trajectories of speculation, development, transformation and re-design. It is these uncertain biographies that DiaDev seeks to follow.

2.Diagnostic value

When a health worker employs a diagnostic device to test a patient for a specific disease, they are no longer (if they ever were) the only two actors with a stake in the result. The diagnostic revolution has galvanized a new collective of stakeholders: large-scale biotech firms already established in the diagnostics industry in Europe and North America; academic research groups and their spin-offs, small for-profit start-ups, product-development partnerships, regulatory bodies, development agencies, philanthropic donors, angel investors, ministries of health, and medical and public health researchers. The latent presence of these multiple actors raises the question: who and what is diagnosis for?

Drawing on perspectives and questions in social anthropology, DiaDev explores the multiple values that underpin investments in the testing revolution. What kind of humanitarian, scientific, medical and economic value does diagnosis generate and for whom? How do people know what a good diagnostic device is and what modes of measurement and evidentiary thresholds do they employ to decide this? How are different values negotiated and transformed in the course of device development, design, deployment and use? What kinds of mechanisms are international organisations introducing to manage multi-stakeholder endeavours, and whose voices do they amplify or suppress? For the DiaDev team, diagnostic devices offer an unparalleled opportunity for insight into the changing power dynamics and cultural values that shape global health interventions and partnerships.

3.Diagnostic data

What kind of information do diagnostic devices generate and to what purposes? Some of the loudest voices calling for improved access to diagnosis have emphasized the need for improved care in places without access to reliable laboratory infrastructure. Treating patients solely based on their symptoms risks both misdiagnosis and unnecessary treatment-associated harm. Many of the academic groups, small start-up companies and not-for-profits developing new diagnostic devices for use in resource-limited settings employ a humanitarian discourse to appeal for support and funding for their activities. The DiaDev team will explore how diagnostic devices are transforming clinical encounters, relationships between patients and health workers, and the nature of medical care in the places where they are deployed. But the field of global health diagnostics is emerging rapidly, and the public health, medical, and economic opportunities that accompany diagnostic development and deployment are swiftly proliferating beyond the context of care.

The value and purpose of diagnosis are changing alongside technological developments. Advances in data connectivity mean that diagnostic devices now offer opportunities for the generation of large population level data-sets, with potential applications in public health surveillance, planning, programme evaluation, and emergent disease surveillance and tracking. In the context of emerging disease outbreaks, for example, diagnostics are as significant for the data they can yield about transmission dynamics as they are for the management of individual patients. In elimination campaigns and areas of low transmission, public health experts and funders are increasingly calling for diagnostic devices that can establish whether elimination has been achieved or to monitor the effectiveness of donor-supported disease control programmes. In such situations, diagnostic devices test populations rather than individuals and diagnosis is decoupled from treatment, with potentially significant implications for the fragile social contracts that often embed health technologies in local health systems. Following these developments and the changing meanings and expectations of diagnosis means looking beyond the context of care, to the multiple ways in which diagnostic devices are deployed as data devices and how diagnostic data is reshaping the priorities and relationships of global public health.

Diagnostic Stories

Most of the entries in the “Diagnostic stories” series were originally presented at the DiaDev launch workshop in January 2018. They go some way to addressing DiaDev’s founding questions about how diagnostic devices are transforming health systems and what they reveal of changes in global health values and priorities. They also demonstrate the sheer diversity of diagnostic devices that are being developed and deployed in global settings. Some of the issues the pieces raise, such as the challenges of integration, or the redistribution of expertise, trust and authority, draw attention to commonalities between the devices. In other cases, individual stories draw attention to device-specific technical or ethical dilemmas and promise to open up new avenues for critical enquiry, such as the problems of locating diagnostic devices for zoonotic disease across human and non-human bodies (Thompson), the implementation problems generated when less-accurate rapid diagnostic tests require further confirmatory testing (Bevan; Lee), the role of diagnostics in epidemiology (Harding-Esch); issues of laboratory procurement, repair and maintenance (Bezuidenhout), and the ethics of diagnosis when a test does not lead automatically to medical intervention (Sturdy; Lowy). The range of devices explored in the catalogue demonstrates that the full range of possibilities for the critical study of diagnostic devices in global health are only just becoming apparent, and many fruitful interdisciplinary conversations that cut across history, anthropology, science and technology studies, epidemiology and geography are yet to come.

 

Alice Street is a Senior Lecturer in Social Anthropology at the University of Edinburgh, where she currently holds a European Research Council Starting Grant for ‘Investigating the Design and Use of Diagnostic Devices in Global Health’ (DiaDev). Her research focuses on hospital ethnography, health systems research, global health interventions and medical innovation. She has carried out ethnographic research in Papua New Guinea and India and is the author of Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital.

Diagnostic stories follows the emerging world of devices, instruments, protocols and machines that make up the world of global health diagnostics. Through the telling of stories about specific technological artefacts it traces the rise of diagnosis as a global health concern and offers a critical perspective on the device-focused approach of many attempts to improve diagnostic infrastructure in the Global South. The series is edited by Alice Street.

 

References

Cunningham, A., & Williams, P. (Eds.). (2002). The laboratory revolution in medicine. Cambridge University Press.

Harper, I. (2014) Development and Public Health in the Himalaya: Reflections on healing in Contemporary Nepal. Routledge.

Street, A. (2014). Biomedicine in an unstable place: Infrastructure and personhood in a Papua New Guinean hospital. Duke University Press.

Street, A. (2018). Deep Diagnostics. Limn 9 Little Development Devices/Humanitarian Goods. https://limn.it/articles/deep-diagnostics/

Conjuring Madness: Self/Non Self and Mental Illness in Post-Apartheid Namibia by Mattia Fumanti

6 Avril 2018 - 7:22pm

Il convient plutot de s’attacher à ce que signifie ȇtre un homme, avant de problématiser la folie en terms de santé et maladie, Ludwig Binswanger, Le Rȇve et l’Existence (1954)

 

On a cold winter morning I walked on Independence Avenue, Windhoek’s main thoroughfare in the heart of the capital’s central business district, with M. a young man whom I had known for some months. I felt slightly under dressed for the occasion. Partly because I wasn’t prepared for the cold, and partly because M. was as always dressed very elegantly. On that chilly and windy morning, he was wearing a stylish blue velvet jacket, a nice red shirt, a pair of matching corduroy trousers, and some fine leather shoes. Wearing his sunglasses and his long dread locks, he stood out from the crowd and made, with his combination of vibrant colours, for a very visible and distinguished figure among the Windhoek morning crowd. As we walked along the street, M. greeted several people with his warm smile and strong handshake. This was sometimes accompanied with a joke that made people laugh. Sometimes he would also add a significant hand gesture. He would touch his chest with his fist and then reach out to his interlocutor with his hand, ‘peace my brother’, before departing. I asked him if the people he greeted along the way knew about his condition, and he said ‘no, they don’t’. I found this to be strange in light of what he had told me previously, but I decided not to question him further. We turned off Independence Avenue, and made our way to his office, located in a new commercial building where we sat down for a while. M. was diagnosed with bi-polar disorder, or manic depression, in the early 2000s. M. had told me how at the onset of the illness, he was taken to Angola by his mother, an Oshiwambo speaker who lives in the north of Namibia, to see an onganga, a traditional healer.[i] He recalled in graphic detail the way the onganga had attempted to treat him by administering a potent herbal brew. The brew, aimed to drive away the demons that possessed him, but as he told me ‘just made me vomit and shit the whole day.’ Shackled to a tree for most of the time he felt increasingly powerless and exhausted. He did not feel any improvement in his condition, but felt his body wasting away. So, after four weeks he told his family and the onganga that he felt much better, ‘I lied to them. I could not take it any longer’. The onganga smiled and told him he was free to go. As soon as he returned to his mother’s village just across the border in Namibia, he jumped on a combi (a small twenty-seater bus) and travelled back to Windhoek. ‘As soon as I got to Windhoek I was running wild again, taking my clothes off’, he chuckled. He was apprehended by the police and taken to the Windhoek psychiatric ward- one of the only two psychiatric wards in the country- where he spent some time. After a few weeks he was sent back home. When he got home, he felt depressed and ashamed. He locked himself up in his room avoiding any contacts with friends and even family, ‘I wanted to avoid everyone. I was afraid of the stigma. I was too ashamed’. He would only leave the house to collect his disability pension and the prescription drugs he had been given by the state psychiatrist to manage his condition. Then after some time, ‘almost two years’ he said, M. decided to get his life back on track. With the help of his elder sister he decided to send out his CVs to several companies in Windhoek. M. is a trained accountant with a University degree and he was soon hired by a local financial institution. M. has been working for this company for over a decade now. He told me that he manages his condition by taking his ‘tablets’ regularly and also by cultivating his passion for photography and art for which he has acquired a large following in the capital as a local emerging artist. M. appears regularly at all the openings of local exhibitions as the official photographer and also has held several exhibitions of his own. Most recently he has published a book. M. is a Rastafarian and attends a church in Katutura, Windhoek’s largest and historical township. Moreover, M. has come out openly about his illness, giving interviews to local newspapers and appearing recently on television in the course of the celebration for mental health day held at Windhoek central Hospital.

In many respects, M.’s story is no different from that of many other people who live with mental illness and who go to great lengths to manage their condition. M.’s is undoubtedly a story of pain and hardship, of fear and exclusion, of living and successfully coping with the illness, of survival and resilience in the face of a life changing condition and in a context where the treatment of mental illness for the great majority of Namibians remains woefully inadequate (WHO 2005). M. has only had one therapy session with a clinical psychologist over the last fifteen years. Nearly three decades after Independence in 1990, mental health provisions in Namibia remain at the bottom of the national health budget, despite the call from local practitioners to address the soaring statistics on suicide and alcohol abuse and the legacies of the violent and traumatic colonial past that impinge on postcolonial Namibia (Fenwick 2002; Whittaker 2015).

But this story is not devoid of its own ambiguities and for this reason it cannot simply be reduced to the effective or ineffective management of M.’s condition. In a sense we cannot begin to problematize M.’s illness narratives in terms of illness and health, unless we understand first what it means for M. to be human (See Azorin 1984; Binswanger 1954). This because M.’s narrative and practices revealed also a great deal about his efforts to escape dehumanisation and alienation from kin and to establish and maintain social relations. And M. did so through an incredible effort at self-fashioning and self-making, but also, and this was one of the things that had intrigued me the most about him, at what I would call here, (un)self-(un)making. I am here borrowing from David Napier’s idea of self/non self (2003), as the ways in which the self makes and unmakes itself through a non-self. It is through this creative process of loss and recovery of the self, argues Napier, that the self is able to manage the dangers that comes with an illness (see also Stoller 2009). I will return to this point later in this paper.

From the conversations and encounters I had with M. I realised that M.’s efforts to remain human required a complex balancing act between self and non-self. It was an acrobatic exercise, between the efforts at carving out a space for distinction and visibility. M. told me repeatedly how he loved dressing up in flamboyant colours and in very fashionable attires, in order to stand out from the crowd: ‘to be seen from far. I want people to see me when I approach them’- whilst at the same time anchoring the self firmly within meaningful social relations. His balancing act aimed at reconciling and nurturing the multiple social fields, of self and others that his illness had threatened to sever and thus consign him to an almost inevitable social death (Myers and Ziv 2016).

Whilst stigma and exclusion remain central to the experience of mental illness in most social and cultural contexts, mental illness, eemwengu, is directly associated in the context of Oshiwambo sociality with the idea of social death, with exclusion and isolation, and with the term used to describe a person with mental illness, omunanamwengu, the mad one, standing metonymically for the other. In this sense mental illness is here the non-self par excellence.[ii] As Bartholomew (2017) shows in a recent study on mental illness among Oshiwambo speakers,

‘Using omunanamwengu to describe a person is “offensive because someone [tells] them, like, you are a person of a different group. You are saying [they] are not part of everyone.” Members of the focus group and other participants noted that omunanamwengu men and women are treated extremely poorly and reiterated the insulting nature of the label. The “whole life of a person is lost” as a result of being mentally ill and isolated, which stems from an ascribed state of otherness to those with eemwengu,’ (2017: 429)

In a previous conversation M. recalled a story from his childhood that had a lasting impact on him and on his subsequent management of his illness. When M. was a child he lived with his father in the family home in Katutura, Windhoek. This is the house he still lives in with his siblings. M. told me that a paternal relative, ‘I called him uncle, but he wasn’t a real uncle’, used to live with them. But unlike any other member of the family, he lived outside in a shed with the dogs. ‘He would eat and live outside… he would go off for days… one day he left and never came back’. Watching his uncle live outside with the dogs, made him very sad. He remembers as a child asking his father about the uncle, but his father did not give him a straight answer. ‘It is only now that I live with mental illness that I understand. He was also ill. This is what our people do to us. They put us outside, in shacks and huts in the courtyard to live with the dogs. I don’t want that for people with mental illness. It is very bad’.

Managing one’s illness and escaping stigma are central to the experience of mental illness (Goffman 1963; Holmes and River 1998). This requires on the parts of patients, the management of a complex process of denial, silence, isolation and self-exclusion. Certainly this was the case among most of the people I worked with in the course of my project, some of whom guarded and protected their diagnosis from as many people as possible, even their significant others. As M.’s biography illustrates, denial, silence, isolation, and self-exclusion also characterised his experience in the past, as they do in the present. M. guarded his condition from others and was very reluctant, at first, to speak to me about his illness and take part in my project. However, unlike the other people I met in Windhoek, M. had publicly acknowledged his condition; he had given interviews and spoke on national television about his illness. The fact that he had been diagnosed with mental illness was widely known among friends and acquaintances in Windhoek. M. also campaigned actively for the Namibia Mental Health Association, a voluntary organisation led by patients and mental health practitioners. So in M.’s experience was not marked by denial and silence, but by the opposite strategy. M. undertook a creative process, a difficult balancing act between self and non-self, through which his illness became confined to a mythical place.

Here I want to draw again on the work of David Napier. In the Age of Immunology (2003), Napier demonstrated how the self/non-self opposition is foundational to our understanding of the relationship between self and other. In particular, in building largely on his observation on ritual healing practices in Indonesia, Napier suggests that it is possible to create a safe self that is immune from the dangers of otherness, only if the dangerous non self, is either marginalized or destroyed. In M.’s case the dangerous non-self—his madness—is not simply contained through medication, but through a creative process of self-making that confines the non-self to the margins of a mythical world. M. does not deny the existence of his illness, but he rather confines it within what it means to be human in local Oshiwambo idioms of sociality.

Sitting in his office, I spent time with M. going through the photographs I asked him to take as part of a photo elicitation project I conducted with him and other patients. Among his pictures there were a number of photographs he had taken with friends and neighbours. I asked him who they were and if they knew about his illness.

‘No they do not know. They can’t believe it. If you tell them M. is mad they would not believe you. They see me doing so many things. I work, I take pictures, I do my art, and I also have children. For them my illness is the stuff of dreams.’

In this sense M. mediated and managed his illness through a very complex process of individuation and socialisation. Whilst stigma excludes the ill, and medicalisation pushes an individual to the personal daily management of the illness through medication, M. escaped exclusion by anchoring his illness and its negation within social relations. In the context of Oshiwambo sociality, the rupture caused by mental illness, must be avoided with an effort at preserving ones social fields turning madness into something so unique and visible, that it almost becomes mythical. One could think of this process as the reverse of delusion, one of the symptoms often associated with bi-polar disorder. M.’s words and actions are not those of a delusional subject. His visibility and efforts at standing out are not driven by grandeur, detachment from reality and the denial of one’s illness. On the contrary they are the product of a combined effort at autopoiesis, the making of the self (Toren 2012), and what I call here auto-mytho-poiesis, the making of a mythical self that helps confines the non-self in the realm of dreams. M. acknowledges his illness, he speaks about it publicly, and yet his efforts at standing out and being visible are what make his audience doubt his illness. M. is a conjurer of madness. He confounds his audience through revelation, and yet his process of self-making, leave the audience dazzled and incapable to believe that who they see is someone affected with mental illness.

I here want to argue that this process is akin to what Napier refers to in Foreign Bodies (1992) as selective dissociation. In starting from the recognition that illness is a negotiated event, ‘getting better’, especially he argues in non-Western context, ‘is itself a creative, even artistic, process, in which new categories are created’ (1992:196). This process of change, the dynamic and transformative engagement with illness, Napier argues, is possible through a creative, constructive loss of self, or what Napier calls selective dissociation. But rather than seeing selective dissociation, as another form of pathology, as the complete damnation of the self, as it is understood in much of Western psychoanalytic thought, selective dissociation is the ways in which the individual overcomes uncertainty through a deliberate letting go:

‘since illness can be defined only as an absence of a condition of well-being, this goal such dissociative states is not the self-conscious reflection of one’s disability-it is not, in other words, always to be found in the ‘support group’, in which aberration has a certain normality- but the goal is to find the strength to place one’s illnesses in the context of that condition of well-being, whatever it may be in a particular social context.’ (1992: 198).

Faced with the uncertainty that comes with the diagnosis of mental illness, M. has worked hard to locate his illness in the context of the condition of wellbeing, of what it means to be human in contemporary Namibia. And this process must require daily efforts at the process of self-making and (un)-self (un)-making, as the ultimate balancing act between self and non-self.

Since I left Windhoek in August 2017 I have remained in contact with M. We exchange daily messages on WhatsApp. He sends me regular updates and pictures of his latest achievements: the video and photographs of his latest exhibition and book launch; his public speech at the mental health day; and the pictures of M. donating copies of his book to local libraries and of his art works hanging on the walls of governmental offices. I send him congratulatory messages and he responds almost invariably, with the following line, ‘It is hard…but I must carry on’.

 

Mattia Fumanti is a social anthropologist working on mental illness narratives. He is a senior lecturer in social anthropology at the University of St. Andrews and principal investigator of the Wellcome Trust Seed Award, Narratives of Mental Illness in Contemporary Namibia. His recent publications include The Politics of Distinction: African Elites from Colonialism to Liberation in a Namibian Frontier Town (2016 Sean Kingston Publishing), and “Interdisciplinary Responses to Cultural Citizenship and Migration,” (2016, The Routledge Companion to Contemporary Anthropology edited by Simon Coleman, Susan Hyatt and Ann Kingsolver). He has edited the special issue on ‘The Politics of Homosexuality in Africa’ (2017, Critical African Studies 9, 1). Mattia is the book review editor of the Journal of Southern African Studies and a member of the editorial board of Critical African Studies.

 

References

Azorin, J-M. (1984) ‘Henry Maldiney. L’Homme, L’Art et la Psychiatrie’, in Giudicelli, S. (ed.) Créativité et Folie. Marseille: Actes Écrits et Éditions Actes Sud.

Bartholomew, T. (2017) ‘Madness (Eemwengu) and Its Sources Conceptualizing Mental Illness in Namibian Ovambo Culture’, Journal of Cross Cultural Psychiatry, 48 (3): 421-37.

Binswanger, L. (1954) Le Rȇve et l’Existence. Paris: Desclée de Brouwer. (With and Introduction by Michel Foucault).

Feinstein, A. (2002) ‘Psychiatry in post-apartheid Namibia: a Troubled Legacy’, British Journal of Psychiatry Bulletin, 26 (8): 310-312.

Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice Hall.

Holmes, E. and River, P. (1998) ‘Individual strategies for coping with the stigma of severe mental illness, Cognitive and Behavioral Practice, 5 (2): 231-239.

Myers, N.A. and Ziv, T. (2016) ‘“No One Ever Even Asked Me that Before”: Autobiographical Power, Social Defeat, and Recovery among African Americans with Lived Experiences of Psychosis’, Medical Anthropology Quarterly, 30 (3): 395-413.

Napier, D. (2003) The Age of Immunology. Conceiving the Future in an Alienating World. Chicago: University of Chicago Press.

Napier, D. (1992) Foreign Bodies: Performance, Art, and Symbolic Anthropology. Los Angeles and Berkley: University of California Press.

Stoller, P. (2009) The Power of the Between. An Anthropological Odyssey. Chicago: Chicago University Press.

Toren, C. (2012) ‘Imagining the World that warrants our Imagination – the Revelation of Ontogeny’, Cambridge Anthropology, 30 (1): 64-79.

Whittaker, S. (2015) ‘Violence, Values and Parenting’, The Namibian.

World Health Organization (2005) Mental Health Atlas. Geneva, WHO. www.who.int/mental_health/evidence/mhatlas05/en/

 

Notes

Research leading to this article was funded by a Wellcome Trust Seed Award (203846/Z/16/Z) for the project “Narratives of Mental Illness in Contemporary Namibia” in the Department of Social Anthropology at the University of St Andrews.

[i] I here use the term Oshiwambo as a general ethnic identifier of various ethnic groups whose dialects can be grouped under this term. Most notably among these ethnic groups are the Ova-Kwanyama, Aa-Ndonga, Aa-Mbalanhu, Aa-Ngandjera and Aa-Kwambi.

[ii] Among Oshiwambo speakers, and most widely in Namibia, mental illness is understood as a social illness and as such it requires treatments that are aimed at restoring the social issues underlying the illness.

In the Journals, March 2018 by Julia Kowalski

1 Avril 2018 - 9:38pm

March featured a number of special issues of interest to Somatosphere readers: Anthropology & Medicine has a special issue, “Genomics and Genetic Medicine: Pathways to Global Health?” Contemporary Drug Problems has a special issue out on gender and critical drug studies. Science as Culture has a special forum on “techno-economic assumptions.” Society and Mental Health has a special issue on Race, Ethnicity, Gender, and Mental Health.

American Anthropologist

Called to “Ankle Alley”: Tactical Infrastructure, Migrant Injuries, and Emergency Medical Services on the US–Mexico Border
Ieva Jusionyte

In southern Arizona, emergency responders rescue and transport unauthorized migrants who get hurt crossing the border, either when scaling the steel fence in urban areas or taking remote and dangerous routes through the desert. Using data collected during ethnographic research between 2015 and 2017 with firefighters trained as EMTs or paramedics, the article shows how Border Patrol’s tactical infrastructure produces specific patterns of traumatic injury that are not only routine but also deliberate, allowing us to trace government’s responsibility for what it presents as the unintentional consequence of security buildup on the US–Mexico border.

BioSocieties

The ambiguities of ‘social’ egg freezing and the challenges of informed consent
Emily Jackson

Fertility clinics (and some employers) in the UK and other high-income countries have recently started to offer egg freezing to women concerned about their age-related fertility decline. Because the use of egg freezing for this purpose is new, there is no reliable evidence of its usefulness, or otherwise. There are no guarantees that egg freezing will work, and for many and perhaps most women, their frozen eggs will never be used. It is also unclear whether egg freezing is a positive development for women in general. It offers an additional choice, and it may enable some women to have genetically related children more easily in the future. At the same time, it could be argued that egg freezing individualises and medicalises the social problem of a mismatch between female fertility and when women and men feel ready to have children. This article suggests that egg freezing is an ambiguous technology, whose benefits are as yet speculative, and that women therefore need as much clear and frank information as possible in order to navigate this new and by no means straightforward choice.

Formulating citizenship: The microbiopolitics of the malfunctioning functional beverage
Christy C. W. Spackman

Human and microbial lives constantly intersect. However, accounts of microbial-human partnerings have yet to explore how producers, consumers, and regulators use their imaginings of microbiological activity to shape individual action. How do these understandings and imaginings of microbial life shape relationships with the state in an environment where citizens expect and demand that their government promote food safety via regulatory intervention? This article provides a theoretical framework for understanding producer and consumer responses to the regulatory crackdown over minimal levels of alcohol in kombucha in the U.S., as well as larger conversations about human–microbe relationships. Through interviews with kombucha producers and consumers, media analysis, and observation, I develop the concept of microbiological citizenship to analyze how producers and consumers of kombucha – a fermented tea – sought to preserve their relations with microbial life in the face of regulatory crackdown. Producer practices to re-manage and preserve microbial life in the face of structural difficulties suggest that for post-Pasteurians, encouragement of human–microbe relationships creates new ties of responsibility that promote collaboration rather than competition. Read through the lens of microbiological citizenship, the controversy over kombucha points to how acknowledging, and even welcoming, the microbial irruptions into human life opens up, complicates, and potentially addresses some of the troubling aspects of biological citizenship.

A genealogy of epidemiological reason: Saving lives, social surveys and global population
David Reubi

Metrics have become all pervasive in global health today. Instead of highlighting their advantages or shortcomings, this article builds on Hacking’s notion of historical ontology and explores their political, conceptual and material conditions of possibility. Drawing on research on the Bloomberg Initiative to Reduce Tobacco Use in Developing Countries, one of the largest international efforts to address the non-communicable disease epidemic in the global South, the article starts by introducing the notion of epidemiological reason – a thought style associated with modern epidemiology that undergirds the metrics permeating the global health field and which is made of a multiplicity of elements, from the ethical imperative to save lives to the social-scientific technique of the survey and the concept of global population. The article then goes on to explore the genealogy of this thought style, arguing that three epistemological ruptures have been critical to its development: the reconfiguration of power articulated around a biopolitics of population in the eighteenth and nineteenth centuries; the twentieth-century shift in medical thought marked by the emergence of surveillance medicine and the idea of lifestyle; and the re-organisation of world health informed by globalisation theories at the start of the twenty-first century.

Contesting normal: The DSM-5 and psychiatric subjectivation
Paige L. Sweet, Claire Laurier Decoteau

In this paper, we analyze the debates surrounding the fifth edition of the Diagnostic and Statistical Manual (DSM-5), psychiatry’s manual of mental disorders. One critical component of the recent DSM-5 debates focuses on how expanding definitions of illness reconfigure the underlying category of ‘normality.’ The literature on biomedicalization and neoliberalism suggests that we have moved past the discrete categories of abnormal/normal into an era in which we all must strive for scales of normality, only achievable via scientific optimization – a shift from normalization to normation. However, the DSM-5 debates suggest that this argument may be too totalizing. Many commentators on the DSM-5 revisions pine for an idealized era when the normal and abnormal were ontologically differentiated in dichotomous terms. We show how this desire to salvage normality from the ambiguity of the norm and the expansion of psychiatry’s domain over human conduct constitutes a critique of the neoliberalization of mental health and the biomedicalization of everyday life, which nonetheless essentializes ‘human nature.’ We excavate these figurations of the normal to highlight the ways in which psychiatry both relies upon and troubles the binary between normal and abnormality, and between optimization and essentialization.

Rethinking prevention: Shifting conceptualizations of evidence and intervention in South Africa’s AIDS epidemic
Manjari Mahajan

In recent years, statements about the ‘end of AIDS’ and an ‘AIDS-free world’ have dominated headlines about the epidemic. This contemporary moment of extraordinary optimism has been prompted in significant part by developments in the field of HIV prevention. New approaches to prevention include techniques that are markedly different from older strategies; new prevention techniques are targeted and relentlessly biomedical, and have increasingly displaced older behavior change programs and broad based social measures. HIV/AIDS, which was long called a ‘social epidemic’ marked by unprecedented human rights struggles and community action, has increasingly become dominated by a discourse and practice of discrete interventions and their calculable efficacy. This article aims to explain the shift in conceptualizations and practices of prevention, and the changed understanding of the epidemic. How did prevention become about access to drugs? How did the discourse around HIV/AIDS move from a concern with social determinants of disease and human rights to matters of efficiency, efficacy, and measurable impact? The article argues that a conjunction of new biomedical technologies, changing managerial logics of donors and governments, and emergent evidentiary practices have led to the ascent of new approaches to prevention. To support this argument, it traces prevention strategies over the last three decades in the context of South Africa’s HIV/AIDS epidemic. The South African story, while unique and historically situated, nonetheless serves as a lens through which to understand broad based transformations underway in HIV/AIDS and in global health writ large.

Toward a critical theory of corporate wellness
Gordon Hull, Frank Pasquale

In the U.S., ‘employee wellness’ programs are increasingly attached to employer-provided health insurance. These programs attempt to nudge employees, sometimes quite forcefully, into healthy behaviors such as smoking cessation and exercise routines. Despite being widely promoted as saving on healthcare costs, numerous studies undermine this rationale. After documenting the programs’ failure to deliver a positive return on investment, we analyze them as instead providing an opportunity for employers to exercise increasing control over their employees. Based on human capital theory and neoliberal models of subjectivity that emphasize personal control and responsibility, these programs treat wellness as a lifestyle that employees must be cajoled into adopting, extending the workplace not just into the home but into the bodies of workers, and entrenching the view that one belongs to one’s workplace. At the same time, their selective endorsement of health programs (many scientifically unsupported) produce a social truth of wellness framed as fitness for work. We conclude by arguing that the public health initiatives occluded by the private sector’s promotion of wellness programs would be a much better investment of resources.

Body & Society

Habit and the Politics of Social Change: A Comparison of Nudge Theory and Pragmatist Philosophy
Carolyn Pedwell

Re-thinking the political workings of habit and habituation, this article suggests, is vital to understanding the logics and possibilities of social change today. Any endeavour to explore habit’s affirmative potential, however, must confront its legacies as a colonialist, imperialist and capitalist technology. As a means to explore what it is that differentiates contemporary neoliberal modes of governing through habit from more critical approaches, this article compares contemporary ‘nudge’ theory and policy, as espoused by the behavioural economist Richard Thaler and the legal scholar Cass Sunstein, with the pragmatist philosophies of habit offered by John Dewey, William James and Shannon Sullivan. While nudge advocates focus on how policy-makers and corporate leaders can intervene in the ‘choice architectures’ that surround us to outsmart or bypass problematic human tendencies, I argue, pragmatist philosophers appreciate the necessity of collective efforts to develop new and flexible forms of habituation in order to engender more enduring and democratic forms of social transformation.

Culture, Medicine, and Psychiatry

Lawful Sinners: Reproductive Governance and Moral Agency Around Abortion in Mexico
Elyse Ona Singer

The Catholic Hierarchy unequivocally bans abortion, defining it as a mortal sin. In Mexico City, where the Catholic Church wields considerable political and popular power, abortion was recently decriminalized in a historic vote. Of the roughly 170,000 abortions that have been carried out in Mexico City’s new public sector abortion program to date, more than 60% were among self-reported Catholic women. Drawing on eighteen months of fieldwork, including interviews with 34 Catholic patients, this article examines how Catholic women in Mexico City grapple with abortion decisions that contravene Church teachings in the context of recent abortion reform. Catholic women consistently leveraged the local cultural, economic, and legal context to morally justify their abortion decisions against church condemnation. I argue that Catholic women seeking abortion resist religious injunctions on their reproductive behavior by articulating and asserting their own moral agency grounded in the contextual dimensions of their lives. My analysis informs conversations in medical anthropology on moral decision-making around reproduction and on local dynamics of resistance to reproductive governance. Moreover, my findings speak to the deficiencies of a feminist vision focused narrowly on fertility limitation, versus an expanded framework of reproductive justice that considers as well the need for conditions of income equality and structural supports to facilitate reproduction and parenting among women who desire to keep their pregnancies.

Diversity, Conflict, and Recognition in Hospital Medical Practice
Sylvie Fortin, Serge Maynard

The hospital is a place of encounter between health care providers, patients and family members, the healthy and the suffering, migrants and non-migrants, as well as social and cultural minorities, and majorities of various backgrounds. It is also a space where multiple conceptions of care, life, quality of life, and death are enacted, sometimes inhibiting mutual understanding between caregivers and the cared for, a scenario that in turn may provoke conflict. Through the lens of conflict, we explore in this article the theme of Otherness within the clinic, basing analysis on an ethnographic study conducted in recent years in three cosmopolitan Canadian cities. Daily practices and—on a larger scale—the social space of the clinic become material here for reflecting on recognition (and non-recognition) of the Other as actors in the clinical encounter. The examination of structural and situational conditions that contribute to the emergence of conflict offers an understanding of the diversity of values that pervade the clinic. By way of conclusion, we argue that recognition of diversity, at least on the part of practitioners, is a key condition for the emergence of a pluralist normativity in the social space of the clinic.

Idling in Mao’s Shadow: Heroin Addiction and the Contested Therapeutic Value of Socialist Traditions of Laboring
Nicholas Bartlett

The Chinese government has come under attack by international critics for forcing drug users to labor in the name of treatment. While joining these activists in criticizing conditions in compulsory labor centers, former detainees who congregated at a drop-in center in southern Yunnan also defended the therapeutic potential of socialist legacies of laboring. Shuttling between laboring in state compulsory centers and idling in a market economy, long-term heroin users saw their difficulties in recovering from addiction as inextricably linked to their inability to find suitable work opportunities. Certain drop-in center attendees maintained that earlier Communist laboring projects had helped wayward citizens, including drug addicts, “merge into” society as productive workers. This group evoked the stable long-term jobs and benefits once provided by local state-owned enterprises and the radical revolutionary power of “remolding through labor” they imagined to have existed in the first years of the People’s Republic as powerful alternatives to their recent crisis of idling. The nuanced ways that drop-in center regulars revisited the potential healing power of earlier traditions of socialist laboring as remedies to their contemporary struggles complicates long-standing debates about coercion in treatment and the responsibility of the postsocialist state towards marginalized workers.

Guan (Care/Control): An Ethnographic Understanding of Care for People with Severe Mental Illness from Shanghai’s Urban Communities
Jianfeng Zhu, Tianshu Pan, Hai Yu, Dong Dong

This article investigates how the political culture of Guan (care/control) in China is played out across the platforms of the state, the community and the family through the lens of caring for people with severe mental illness in urban Shanghai. Based on ethnographic data collected from six communities in a district of Shanghai, we provide a nuanced understanding of the roles of family members, street committees and other governmental organizations in their daily practices of caring for people with severe mental illness. We show the complicated and intertwined relationships between local governmental agents and the family. We argue that the political culture of Guan, which permeates the everyday life of Chinese people, tends to objectify its subjects and reflects a long history of patriarchy in Chinese society. Without further changing such political cultural arrangements, respect for the agency of mentally ill patients, the effort of bringing humanistic psychiatric reforms to China, will be in vain.

Attachment, Mothering and Mental Illness: Mother–Infant Therapy in an Institutional Context
Sonia Masciantonio, Susan R. Hemer, Anna Chur-Hansen

This paper is an ethnographic exploration of how attachment theory underpins therapeutic practices in an Australian institutional context where mothers of infants have been diagnosed and are undergoing treatment for mental illness. We argue that attachment theory in this particular context rests on a series of principles or assumptions: that attachment theory is universally applicable; that attachment is dyadic and gendered; that there is an attachment template formed which can be transferred across generations and shapes future social interactions; that there is understood to be a mental health risk to the infant when attachment is characterised as problematic; and that this risk can be mitigated through the therapeutic practices advocated by the institution. Through an in-depth case study, this paper demonstrates how these assumptions cohere in practice and are used to assess mothering as deficient, to choose therapeutic options, to shape women’s behaviour, and to formulate decisions about child placement.

Distinct and Untamed: Articulating Bulimic Identities
Karin Eli

Bulimia nervosa and anorexia nervosa are inextricably linked, with substantial clinical and epidemiological overlaps. Yet, while anorexia has been analyzed extensively in medical anthropology, bulimia remains under-theorized. This is, perhaps, because, compared to self-starvation, binge eating presents a logic of practice that is difficult to reconcile with culturally reified notions of self-control, transcendence, and hard work. Thus, although anthropologists have analyzed anorexic subjectivities as imbued with a sense of cleanliness and purity, moral superiority, and heroics, similar analyses have not been extended to bulimic subjectivities; instead, bulimia has been subsumed, as a tangential disorder, into analyses of anorexia. In this paper, I aim to move bulimic identities from the margins to the centre of anthropological analysis. Based on participant narratives, I analyze bulimic identity as articulated by six Israeli women who identified as bulimic and received treatment for bulimia. The women’s narratives show that bulimic identity is aligned with concepts of distinct selfhood. For these women, to be bulimic was to be framed as ‘abnormal’; but this ‘abnormality’, albeit a source of social stigma and shame, held meanings that went beyond pathology. Through the claiming of bulimic identity, the women positioned themselves as untamed, non-conforming subjects, who acted against gendered and classed expectations—and even against the limitations of the body. Their constructions of bulimic distinction highlight the need for anthropological work that situates bulimia not as a footnote to anorexia, but as a structurally and culturally meaningful condition in its own right.

A Sorrow Shared is a Sorrow Halved: The Search for Empathetic Understanding of Family Members of a Person with Early-Onset Dementia
Silke Hoppe

In this article, I explore how family members of a person with early-onset dementia in the Netherlands attempt to achieve empathetic understanding from significant others, and the barriers they encounter in the process. Based on qualitative interviews, I show that the type of relationship shapes the choices people have to communicate their suffering and their expectations regarding the reactions of others. This article builds on theoretical work on empathy and problematises the notion of shared experiences. It focuses on empathy between family members and significant others, arguing that empathetic understanding between these people is a field of study thus far insufficiently explored.

Ethos

Suggestions of Power: Searching for Efficacy in Indonesia’s Hypnosis Boom
Nicholas J. Long

From relative obscurity in the 1990s, hypnotherapy has become a major industry in contemporary Indonesia. This article examines its tremendous surge in popularity, and the subsequent trajectories of its vernacularization. It shows the hypnosis boom to have been underpinned by the introduction of a distinctive “30% theory, 70% practice” seminar format, structured in such a way as to allow mass‐market consumers to experience themselves as hypnotically efficacious. With such efficacy proving unsustainable outside the seminar context, Indonesians reached for and developed alternative conceptions of “hypnosis” that allowed them to continue as effective hypnotherapists. Such material demonstrates the value of incorporating a theory of interactional affordances into anthropological models of cultural transmission and globalization. [efficacy, hypnosis, globalization, Indonesia, interaction, psychotherapy]

“This Path Is Full of Thorns”: Narrative, Subjunctivity, and HIV in Indonesia
Annemarie Samuels

In this article, I focus on the active fostering of subjunctivity in processes of narrative worldmaking. Drawing extensively from the narrative of an HIV‐positive woman in Indonesia, I show that by subjunctively leaving open multiple narrative trajectories and future possibilities, individuals may navigate the ethical complexities of their lives and maintain relationships with the world and others while staying true to the things that really matter to them. I suggest that although entertaining a range of possible future trajectories may involve constructing several alternative narrative plots, most of the time there is no plot to be followed, and not determining future parallel plots may be more helpful in balancing conflicting ethical demands. By not imagining clear beginnings and endings of narratives yet actively retaining narrative possibilities, values that may seem incompatible in the present may then all be kept open for future moral striving.

“Now We Live for the Money”: Shifting Markers of Status, Stress, and Immune Function in the Peruvian Amazon
Paula Tallman

This article examines the relationship between cultural changes, socioeconomic status (SES), and psychobiological health outcomes among the Awajún, an indigenous group living in the Peruvian Amazon. Specifically, it documents how historically important markers of status for the Awajún, such as spiritual visions and war‐time success, were replaced by Western markers of status including occupation, income, education and Spanish‐language use. These changes are linked to the broader political‐economic and social agendas of Peruvian government officials and American missionaries who sought religious conversion and economic gain in the deepest reaches of the Amazon. The resulting socioeconomic hierarchies have implications for the health and well‐being of Awajún men and women in the present. Independent of other relevant factors such as age and community, men with lower SES tended to have higher Epstein‐Barr Virus (EBV) antibodies, indicating suppressed immune function, and both men and women with lower SES tended to have higher reported psychological stress levels. This critical biocultural analysis suggests that existing socioeconomic hierarchies in Awajún communities are the result of active colonial, evangelical, and capitalist efforts and shows that local histories and social spheres “get under the skin” to influence the mind and body.

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

Healthy habits are no fun: How Dutch youth negotiate discourses about food, fit, fat, and fun
Noortje van Amsterdam, Annelies Knoppers

In this article, we use the notion of “biopedagogical practices” to explore how Dutch youth respond to health messages that focus on body weight. Previous studies suggest that such health messages encourage body dissatisfaction in youth. Few studies, however, focus on the local/cultural specificity of youth’s responses to these biopedagogical practices. In this article, we address questions about the re-interpretation of and resistance to health messages that Dutch youth engage in and how these can be understood in their local context. The data were drawn from two previously conducted studies in which a total of 64 Dutch teenagers (aged 12–18 years) took part. We employed a variety of qualitative data collection methods and a feminist poststructuralist perspective to analyze how Dutch youth negotiate biopedagogical practices about health. The results show that our participants constructed health in terms of appearance and reproduced negative constructions regarding fat embodiment. Yet they also often circumvented “healthy” lifestyle behaviors prescribed by biopedagogies of health. They did so first by avoiding physical activities because they were afraid of displaying fat embodiment in the settings of sport and physical education where surveillance is omnipresent. Second, they disregarded advice about healthy eating by drawing on having fun as an alternative discursive resource. We argue that having fun is both part of youth culture and characteristic of the discourse about sociability (gezelligheid) that is a central element of Dutch culture.

Clinical encounter and the logic of relationality: Reconfiguring bodies and subjectivities in clinical relations
Karolina A Kazimierczak

This article critically examines the significance of relational approaches for sociological understandings of clinical interactions, relations and practices, by exploring the ways in which relational theories and concepts have been employed in the recent sociological accounts of clinical encounters to trouble the classical dyadic models of clinical interaction and the related atomistic conceptions of agency and accountability. Reading this work through the theoretical contributions from feminist science studies scholarship, and particularly the work of Donna Haraway and Karen Barad, the article proposes an alternative understanding of clinical interactions, relations and practices, where relations are conceived as constitutive of individuals (objects/bodies and their attributes/identities), rather than being constituted by encounters between individuals. Key for this understanding is the reconceptualisation of clinical encounter as an apparatus of bodily production through which different agents (patients, clinicians, diseases and healthcare services) are materialised and enacted.

Health and Place

Investigating connectivity in the urban food landscapes of migrant women facing food insecurity in Washington, DC
Colleen Hammelman

The survival strategies of migrant women living in urban poverty are embedded in urban food landscapes (‘foodscapes’) characterized by dynamic social relationships and mobility. Relying on interviews with 31 migrant women in Washington, DC, this paper traces the socio-spatial conditions of their urban foodscapes to show that urban environments inhabited by low-income migrants are dynamic, stretching across multiple neighborhoods as they move throughout the city with social networks to obtain affordable, quality, and culturally appropriate food. Investigating these foodscapes demonstrates the relational nature of food provisioning strategies thus providing a critique of simplistic explanations of hunger that treat food insecure residents as static, ignorant, and individual economic actors. These explanations risk producing equally simplistic and inefficient approaches to addressing food insecurity such as increasing mainstream consumption opportunities in so-called food deserts or focusing on nutrition education and individual choice without considering residents’ dynamic urban experiences. As a result, this paper argues that programmatic responses to insecure urban foodscapes should be developed that foster social and physical connectivity while better addressing structural causes of hunger.

Privacy, boundaries and smart homes for health: An ethnographic study
Alison Burrows, David Coyle, Rachael Gooberman-Hill

This article explores how people negotiate borders and boundaries within the home, in the context of health and the introduction of new technologies. We draw on an ethnographic study involving a socially diverse group of people, which included people with experience of telecare or smart home energy systems. Participants engaged in various strategies to regulate the borders of their home, even though new technologies have begun to change the nature of these borders. Participants managed health conditions but also their use of technology through boundary work that permitted devices to be more or less visible and integrated within the home. Findings highlight that if smart healthcare technologies are to be accepted in the home then there is a need for mechanisms that allow people to control the interpretation of data and flow of information generated about them and their households.

Spaces of hope? Youth perspectives on health and wellness in indigenous communities
Lydia Wood, David Kamper, Kate Swanson

This article addresses an apparent paradox between academic and policy depictions of American Indian reservations as “broken” and “unhealthy” places, and Indigenous youth perceptions of reservations as spaces of “health” and “wellness.” Public health literature often frames reservations as damaged, health-denying places, chronicling the extraordinarily high rates of suicide, substance abuse, as well as vast health disparities. Despite these dire statistics, our research with Native youth in San Diego County found that young people chose to primarily emphasize their positive experiences with, and attachments to, their reservations. In this article, we share strength- and desire-based narratives to explore how reservations can serve as spaces of wellness for Indigenous youth, despite ongoing settler colonial harm. We seek to expand the discussion on the unintended consequences of deficit-centered scholarship by arguing that health research should also engage with the narratives of hope and desire that are reflective of the way many Native youth feel about their communities. In this article, we urge scholars and practitioners to rethink how we conduct health research to include methodologies that listen to the narratives and experiences of those who, day in and day out, navigate settler colonial landscapes, while continuing to create spaces of hope and healing.

Journal of the Royal Anthropological Institute

Beyond the everyday: sustaining kinship in western Kenya
Elizabeth Cooper

This article considers the efforts people in western Kenya have been making to uphold an ideology and practice of the natal home and kin group as morally authoritative, in a context where the very survival of many homes and families has been compromised by the devastating effects of AIDS‐related deaths and impoverishment. It traces how orphaned adults, who have little experience or memory of living among natal kin at natal homes, make concerted efforts to reconnect – often in necessarily improvised ways – with what survives of their natal kin and home. For women, in particular, such efforts seem less motivated by immediate material interests and more focused on demonstrating lineal solidarity as a means to affirming their moral personhood and value. The analysis addresses how people lacking shared everyday experiences of kinship and homes sustain the possibility of their kinship futures through a combination of imagination and ideological commitment.

Medical Anthropology Quarterly

Embedded Narratives: Metabolic Disorders and Pentecostal Conversion in Samoa
Jessica Hardin

Drawing from interviews and participant observation, this article explores the intersection of diagnosis of metabolic disorders and religious conversion among Pentecostal Christians in Samoa by analyzing what I call embedded narratives––conversion narratives embedded in illness narratives. Drawing from ethnographic data, I examine how using conversion narrative conventions enabled those living with metabolic disorders to narrate behavior change in a culturally and socially valorized way. By embedding their narratives, I suggest those living with metabolic disorders shifted the object of care from a disease process toward the creation of a religious life and in turn transformed the risks associated with metabolic disorders, including diet, exercise, and pharmaceutical use into moral risks associated with everyday religious life. In these cases, Pentecostal conversion created possible scripts for changing health practices, managing stress, and shifting resource use in the name of religious commitment, providing insights into how self‐care can be an expression of religious practice.

Efficacious Holidays: The Therapeutic Dimensions of Pleasure and Discipline in Czech Respiratory Spas
Susanna Trnka

As evidence‐based medicine has increasingly become the standard for assessing the efficacy of health care, the Czech Republic finds itself in a dilemma, with centuries of sanatorium‐style spa treatments resisting easy categorization. Despite some critics’ contentions that spas are “pointless holidays” and reductions in government funding of health spas, in 2014 Czech courts affirmed every Czech citizen’s right to spa treatments if their health status merits it. Drawing on research in two children’s respiratory spas, this article considers the experiences of patients aged 2–15 and their accompanying parents or guardians (mainly mothers) to suggest that in addition to the range of therapeutic procedures highlighted within spa cures, more amorphous aspects—such as pleasure and discipline—may be just as central to spas’ successes. Indeed, as some spa physicians contend, spas may be considered a “package deal,” to which EBM criteria is not easily applied.

Handle with Care: Rethinking the Rights versus Culture Dichotomy in Cancer Disclosure in India
Cecilia Coale Van Hollen

Medical practitioners, bioethicists, psychologists, and anthropologists have debated whether it is ethical to disclose or withhold information from patients about cancer diagnoses. This debate is framed as pitting universal individual human rights against cultural pluralism. The rights‐based argument asserts that people have a right to information about their own health to make the best decisions about their treatment. The cultural variation argument suggests that in some cultural contexts there is a perception that information about one’s cancer diagnosis may cause more harm than good due to the psychological trauma this may cause. Based on ethnographic research with cancer patients in India, I argue that both sides of this debate overemphasize the importance of the content of the information that may be disclosed or withheld and underestimate the central ways in which the act of disclosing or withholding information is evaluated as a symbol of care of paramount concern to patients.

Only Near Is Dear? Doing Elderly Care with Everyday ICTs in Indian Transnational Families
Tanja Ahlin

In Kerala, South India, young people, especially women, are encouraged to become nurses in order to migrate abroad for work and thereby improve the financial status of their family. Meanwhile, many of their parents remain in India by themselves. This is occurring in the context of a strong popular discourse of elder abandonment, related to the local norms of intergenerational co‐habitation. Based on fieldwork in Kerala and one of the nurses’ destination countries, Oman, I present evidence that complicates this discourse by showing how: (1) migration is a form of elder care practice in itself; and (2) care for the elderly continues across countries and continents with the help of information and communication technologies (ICTs). Using the theoretical approaches of science and technology studies, I analyze ICTs as key members of care collectives and argue that ICTs have a significant role in reshaping care relations at a distance.

Recognizing Dementia: Constructing Deconstruction in a Danish Memory Clinic
Iben M. Gjødsbøl and Mette N. Svendsen

This article investigates how a person with dementia is made up through intersubjective acts of recognition. Based on ethnographic fieldwork in a Danish memory clinic, we show that identification of disease requires patients to be substituted by their relatives in constructing believable medical narratives; yet during memory testing, patients are not allowed any substitution to clearly expose cognitive shortcomings. In combining works of theorists Ian Hacking and Paul Ricoeur, we argue that the clinical identification of dementia unmakes the knowing subject, a deconstruction that threatens to misrecognize and humiliate the person under examination. The article ends by proposing that dementia be the condition that forces us to rethink our ways of recognizing persons more generally. Thus, dementia diagnostics provide insights into different enactments of the person that invite us to explore practices of substitution and modes of interaction emerging when our fundamental dependency becomes unquestionable.

The Attachment Imperative: Parental Experiences of Relation‐making in a Danish Neonatal Intensive Care Unit
Laura E. Navne, Mette N. Svendsen, Tine M. Gammeltoft

In this article, we explore how parents establish relations with extremely premature infants whose lives and futures are uncertain. Drawing on ethnographic fieldwork in a Danish Neonatal Intensive Care Unit (NICU), we engage recent discussions of the limits of conventional anthropological thinking on social relations and point to the productive aspects of practices of distance and detachment. We show that while the NICU upholds an imperative of attachment independently of the infant’s chances of survival, for parents, attachment is contingent on certain hesitations in relation to their infant. We argue that there are nuances in practices of relationmaking in need of more attention (i.e., the nexus of attachment and detachment). Refraining from touching, holding, and feeding their infants during critical periods, the parents enact detachment as integral to their practices of attachment. Such “cuts” in parent–infant relations become steps on the way to securing the infant’s survival and making kin(ship). We conclude that although infants may be articulated as “maybe‐lives” by staff, in the NICU as well as in Danish society, the ideal of attachment appears to leave little room for “maybe‐parents.”

“You Can Learn Merely by Listening to the Way a Patient Walks through the Door”: The Transmission of Sensory Medical Knowledge
Gili Hammer

Examining the mechanisms of medical knowledge transfer, this article addresses the ways nonvisual senses are employed within medical training, asking about the role of sound, touch, and movement in transmitting knowledge of the body. Based on a 10‐month ethnography in a medical massage training course for blind students, the article examines the ways sensory medical knowledge is transferred in this setting. I discuss the multisensory characteristics of medical knowledge transfer, and the dual process inherent in this sensory pedagogy, in which senses such as touch and hearing undergo medicalization and scientification, while medicine enters the realm of the sensorial. Contributing to emerging research of nonvisual senses in medical training, this case study allows rethinking larger processes of medical knowing, challenging the dominancy of vision as the means of scientific knowledge transmission, and exposing the multisensorial elements of medical perception, and learning in general.

Medical Humanities

Cultural crossings of care: An appeal to the medical humanities
Julia Kristeva, Marie Rose Moro, John Ødemark, Eivind Engebretsen

Modern medicine is confronted with cultural crossings in various forms. In facing these challenges, it is not enough to simply increase our insight into the cultural dimensions of health and well-being. We must, more radically, question the conventional distinction between the ‘objectivity of science’ and the ‘subjectivity of culture’. This obligation creates an urgent call for the medical humanities but also for a fundamental rethinking of their grounding assumptions.

Julia Kristeva (JK) has problematised the biomedical concept of health through her reading of the anthropogony of Cura (Care), who according to the Roman myth created man out of a piece of clay. JK uses this fable as an allegory for the cultural distinction between health construed as a ‘definitive state’, which belongs to biological life (bios), and healing as a durative ‘process with twists and turns in time’ that characterises human living (zoe). A consequence of this demarcation is that biomedicine is in constant need of ‘repairing’ and bridging the gap between bios and zoe, nature and culture. Even in radical versions, the medical humanities are mostly reduced to such an instrument of repairment, seeing them as what we refer to as a soft, ‘subjective’ and cultural supplement to a stable body of ‘objective’, biomedical and scientific knowledge. In this article, we present a prolegomenon to a more radical programme for the medical humanities, which calls the conventional distinctions between the humanities and the natural sciences into question, acknowledges the pathological and healing powers of culture, and sees the body as a complex biocultural fact. A key element in such a project is the rethinking of the concept of ‘evidence’ in healthcare.

New Genetics & Society

Knowing something versus feeling different: the effects and non-effects of genetic ancestry on racial identity
Janet K. Shim, Sonia Rab Alam & Bradley E. Aouizerat

Since the completion of the Human Genome Project, there have been pitched debates about its implications and the research it enables. One prominent thread of concern focuses on the role of post-genomic science on technically enabling and generating interest in genetic ancestry testing (GAT). Critical analyses of GAT have pointed to multiple issues, raising the alarm on consumers’ experiences with such technologies. This paper describes the results of a pilot study in which we tracked women’s experiences receiving their genetic ancestry results, and their understandings of, reactions to, and valuing of this information over time. Overwhelmingly, our participants reported a curious combination of anticipation and satisfaction yet no discernable impact on their sense of self or racial identity. We elaborate on the effects and non-effects of GAT for the women in our study, and how we make sense of their simultaneous experiences of ‘knowing something’ but not ‘feeling different.’

Clinicians’ views and expectations of human microbiome science on asthma and its translations
Jennie Haw & Kieran C. O’Doherty

Human microbiome science examines the microbiota that live in and on the human body and their role in human health. This paper examines clinicians’ views and expectations of microbiome science in asthma care. Drawing on qualitative interviews with 10 clinicians in Canada, we explore their perspectives for insights into translation of human microbiome science. The emphasis on novelty in much microbiome scholarship, we suggest, does not account fully for the ways in which microbiome science translations may be taken up in multiple ways that are both disruptive to and continuous with contemporary biomedicine. We suggest that clinicians drew on scientific discourses of “evidence” and “facts” as a form of boundary work to re-establish a separation between western biomedicine and alternative health practitioners, and clinical expertise and lay knowledge. We conclude with a discussion of human microbiome science and the emergence of post-Pasteurian modes of health in western biomedicine.

Science, Technology, and Human Values

Mapping Superpositionality in Global Ethnography
Logan D. A. Williams

Science studies scholars often study up to high-tech elites who produce and design scientific knowledge and technology. Methodological tension begins when you pair a desire to study down to less economically developed countries, with the desire to study up to high-tech elites within them. This becomes further complicated when the ethnographer and his/her informants share professional interests and credentials. In these situations, the researcher has high status because of geopolitical privilege. However, the researcher is neither a high-tech elite nor a local cultural elite. How might the ethnographer successfully access and navigate field sites imbued with these unseen power differentials? There are currently no visual mapping tools to enhance the process of reflexivity by feminist ethnographers, as they consider their globally embedded multiple, hierarchical, and situated positionality. This reflection methodology piece provides a tool to consider this phenomenon, as it exists across the Global North/South divide of power. Such a tool would be useful to northern ethnographers to better strategize ethics and access while avoiding complicity with structures of inequality and empowering their southern interlocutors.

The Materiality of Care and Nurses’ “Attitude Problem”
Josiane Carine Tantchou

Health systems in Africa have been widely studied in the social sciences. Several aspects have been addressed in particular: the provision of and access to care, working conditions, the human resources crisis, and patient–provider relations, for example. In this respect, the idea of an “attitude problem,” with health-care providers offering different services for different patients, has been suggested. Recently, researchers have studied the impact of global health initiatives on local health systems, mainly in the fight against HIV/AIDS. Others have explored why some health issues have attracted more attention than others. Despite this wealth of studies, one point remains insufficiently addressed: the materiality of care and its impact on interactions (human and nonhuman) within hospital settings. In this article, I consider the heuristic value of the uses of a maternity ward in a resource-limited country (Cameroon) to understand health workers’ so-called attitude problem, specifically, the tension characteristic of patient–provider interactions. I suggest that this tension is related to a continuous process of translation and anticipation to adapt the maternity ward’s space to everyday activities. Drawing on Akrich’s description of technical objects, and Lussault’s pragmatics of space, I attempt to show that in this context, care is also an art of tinkering with unpredictable bodies in unstable hospitals’ spaces.

Social Science & Medicine

Media coverage of the Zika crisis in Brazil: The construction of a ‘war’ frame that masked social and gender inequalities
Barbara Ribeiroa, Sarah Hartley, Brigitte Nerlich, Rusi Jaspal

Between 2015 and 2016, Zika became an epidemic of global concern and the focus of intense media coverage. Using a hybrid model of frame and social representations theory, we examine how the Zika outbreak was reported in two major newspapers in Brazil: O Globo and Folha de São Paulo. The analysis of 186 articles published between December 2015 and May 2016 reveals a dominant ‘war’ frame supported by two sub-frames: one focused on eradicating the vector (mosquito) and another on controlling microcephaly, placing the burden of prevention on women. Scientific uncertainties about the virus and its relationship to microcephaly coupled with political uncertainties in Brazil increased the power of the war frame. This frame gave prominence and legitimacy to certain representations of disease management during the crisis, masking social and gender inequalities. We show how the cartography of the disease overlaps with that of poverty and regional inequality in Brazil to argue that addressing socio-economic aspects is essential, but normally neglected, in media communications during disease outbreaks like Zika.

Getting pain on the table in primary care physical exams
Amanda McArthur

Using conversation analysis and a dataset of 171 video recordings of US primary care encounters (2003–2005), this paper examines patients’ unsolicited pain informings – e.g. “that hurts” – during the physical examination phase of acute care visits. I argue that when patients experience pain in a physical exam but have not been asked a question like “does that hurt?”, they face an interactional dilemma. Having presented their health problem to a doctor, they have tacitly set in motion epistemic and interactional asymmetries through which the doctor investigates the problem on their behalf. In this context, volunteering unsolicited pain information could facilitate progress towards an accurate diagnosis, but it could also be heard as independently asserting the relevance of pain to what the doctor is doing, thereby departing from the previously established asymmetries. I show that patients manage this dilemma by using turn design practices to implicitly account for unsolicited pain informings as motivated by a virtual solicitation and/or a sudden pain sensation. With these practices, patients manage to share potentially relevant pain information without accountably being heard to assert its relevance to the doctor’s diagnostic inquiry. This achievement demonstrates how asymmetries in doctor-patient communication are a joint accomplishment of both doctors and patients, and are incarnate in the details of everyday clinical interactions.

“These African stories”: Life, labor, and dying in northern Zambia
Joshua Garoon

This paper analyzes the effects of antiretroviral therapy (ART) on the social worlds of people living with HIV and ART (PLHA) in rural northern Zambia. Studies have demonstrated high rates of ART adherence over a range of sites in southern Africa. Drawing on a year of ethnographic research conducted in Zambia’s Mukungule chiefdom between 2006 and 2008, this study investigates expectations of this exemplary adherence, and experiences of treatment failure. Motivated by the life and AIDS-related death of a Mukungule resident, Grace, it moves beyond asking “what made initial cohorts of African PLHA exceptionally adherent?” to raise the pressing question of “what happens next?” Previous scholarship addressing this question has analyzed how PLHA navigate the competing moral and political economies of local kinship and social networks and global HIV/AIDS initiatives. Scholars have emphasized the afterlives of access and adherence, looking beyond survival to what “the good life” means for PLHA, and placing PLHA at the center of action and analysis. This paper flips that script, by focusing on the stories that Grace’s death spurred Mukungule residents to share. It shows how attention to and analysis of stories told not just about, but by members of PLHA’s kinship and social networks, are critical to developing a more robust understanding of exemplary adherence and treatment failure. Such understanding critically depends on paying more attention to how those living with and caring for PLHA (and especially their families) facilitate PLHA’s pursuit of good and “normal” lives – not just while, but also through, pursuing their own.

The becoming of methadone in Kenya: How an intervention’s implementation constitutes recovery potential
Tim Rhodes

This analysis treats the recent introduction of methadone treatment in Kenya as a case of ‘evidence-making intervention’. Using 30 qualitative interviews with people in receipt of methadone treatment in Nairobi, Kenya, methadone’s becoming is treated as an effect of its narrative and material implementations. The interviews are shown to enact a narrative of methadone recovery potential towards normalcy beyond addiction. Such recovery potential is materialised in practice through social interactions wherein methadone’s embodied effects are seen to be believed. Here, the recovering body affects others’ recovery potential. In a context of competing claims about methadone’s effects, including the circulation of doubt about experimenting with methadone treatment, embodied methadone effect helps moderate the multiverse of methadone knowledge. The material dynamics of methadone treatment delivery also affect its recovery potential, with the methadone queue enacting a rationing of recovery hope. Here, the experience of methadone’s implementation loops back to a life with drugs. I conclude that there is a coexistence of potentiality and actuality, a ‘methadone multiple’, produced through its narrative and material implementations.

Sociology of Health & Illness

‘Love builds brains’: representations of attachment and children’s brain development in parenting education material
Glenda Wall

A focus on early brain development has come to dominate expert child rearing advice over the past two decades. Recent scholars have noted a reinvigoration of the concept of attachment in this advice and changes in the ways that attachment is framed and understood. The extent to which the concept of attachment is drawn on, the way it is framed, and the consequences for mothers, families and parent‐child relationships is examined through a discursive analysis of a current Canadian parental education campaign. Findings support the argument that attachment is receiving a great deal of attention in brain‐based parenting education programmes as children’s emotional development becomes increasingly prioritized. Attachment is presented as needing to be actively and continually built through expert‐guided empathetic and responsive parental behaviour, and is framed as crucial for the development of brain pathways that promote emotional strength and self‐regulation in children. Attachment‐building is also presented as requiring highly intensive parenting that falls overwhelmingly to mothers. The parent‐child relationship that is envisioned is one that is instrumental, lacking in affect and conducive to the creation of ideal self‐regulating neo‐liberal citizens.

Theory, Culture, & Society

Pharmaceutical Capitalism and its Logistics: Access to Hepatitis C Treatment
Mathieu Quet

New and highly effective treatments against hepatitis C have come on the market in recent years. Their high cost has sparked vociferous debate concerning drug price control, the state’s responsibility towards infected populations and the power of multinational pharmaceutical companies. One possible way to understand these debates is to take into account the particular effects of pharmaceutical capitalism upon the circulation of commodities. Recent protests related to access to treatment identify circulation of medicines as an increasing site of capital accumulation and conflicts. This article defines the notion of ‘logistic regimes’ and shows how such regimes are contested. It analyzes critical ways of engaging with contemporary pharmaceutical logistics, through variations on medical tourism, critiques of patenting and pricing practices, and organization of alternative supply routes. It further proposes to deepen the notion of diversion as a political concept describing specific forms of opposition to the management practices of logistical capitalism.

 

Welcoming our new Editorial Collaborative members! by Eugene Raikhel

28 Mars 2018 - 4:21pm

I’m very pleased to announce that we are welcoming a group of new members to Somatosphere‘s Editorial Collaborative. Below is a list of their names and affiliations, but please see the masthead for more detailed bios.

Nayantara Sheoran Appleton is a lecturer in Cultural Anthropology at Victoria University of Wellington, New Zealand.

Adia Benton is an Assistant Professor of Anthropology and African Studies at Northwestern University.

Ekaterina Borozdina is an Assistant Professor at European University at Saint-Petersburg, Russia.

Mara Buchbinder, Ph.D. is Associate Professor of Social Medicine and Adjunct Associate Professor of Anthropology at UNC – Chapel Hill.

Fanny Chabrol is a Research Fellow at Centre Population et Développement in Paris.

Helena Hansen, MD, PhD is Assistant Professor of Anthropology and Assistant Professor of Psychiatry at New York University.

Anna Harris is an Assistant Professor in the Technology and Society Studies Department at Maastricht University in the Netherlands.

Ken MacLeish is Assistant Professor of Anthropology and Medicine, Health, and Society at Vanderbilt University.

Gergely Mohácsi is an anthropologist in the School of Human Sciences at Osaka University, Japan.

Cristian Montenegro is a PhD candidate in the Department of Methodology at the London School of Economics.

Michelle Pentecost is a postdoctoral associate at the Institute for Social and Cultural Anthropology at the University of Oxford and a research affiliate of the Department of Anthropology at the University of Cape Town as part of the First Thousand Days Research Group.

Emilia Sanabria is Assistant Professor of Anthropology at the Ecole Normale Supérieure de Lyon (ENS Lyon).

Noah Tamarkin is an assistant professor in the Department of Comparative Studies at the Ohio State University and a research associate at the Wits Institute for Social and Economic Research (WiSER) at the University of the Witwatersrand in Johannesburg, South Africa.

Yu-chuan Wu is an assistant research fellow at the Institute of History and Philology at Academia Sinica, Taiwan.

I’d like to welcome you all warmly to the Editorial Collaborative!

‘Enlightenment’ now and empathy later? by Agustín Fuentes

19 Mars 2018 - 1:33pm

Steven Pinker wrote Enlightenment Now thinking he was making the case for “reason, science, humanism, and progress.” But instead produced a 556 page text filled with some interesting statistics, a few valid insights, a lot of naiveté, and a stunning lack of empathy.

Let me be clear about a few things: I both practice and love science, especially evolutionary biology. And, based on my work on human evolution, human capacities, and human histories, I am relatively optimistic about humanity. I am neither a “progressophobe” nor “dataphobic.” I agree with Pinker that many material, and some social, facets of life have gotten better for many, but not all, people across the past three centuries, and I especially agree with Pinker’s musings on terrorism and knowledge. However, because of my anthropological training, my research into human evolution and behavior, and my interest in the human condition, I cannot share in Pinker’s blithe assertions that things are truly getting better for everyone and that trusting the current dominant geo-political-economic system is going to bring us to the goals of the enlightenment (at least his version of it).

Many commentators have already tackled the historical deficiencies in “Enlightenment Now”, so I won’t overlap with those commentaries here. Suffice to say that they include a demonstration of Pinker’s broad ignorance of environmental issues by the author George Monbiot in The Guardian, and evaluations of Pinker’s misrepresentation of the enlightenment itself by the historian David A Bell in The Nation and by the historian and noted humanist Peter Harrison for the Australian Broadcasting Corporation. Rather, I want to start my review by pointing out something that has concerned me for a long time and that has grave implications for the contents and purpose of this book: Pinker’s dramatic lack of understanding of evolutionary processes and the human evolutionary record. These basic flaws undergird Pinker’s world view and infuse his assumptions about the processes of life with a level of simplistic determinism so deep that it is no wonder his take on systems of such massive complexity as human economic, political, ecological, and social histories, border on the facile.

One can find, on page 25 in Pinker’s “reality-setting” chapter, Entro, Evo, Info, the deep misunderstandings of human evolution that reflect an extremely one-dimensional take on how the world works and is. Pinker tells us that evolution guarantees lots of malevolence in the world because “natural selection consist of competition among genes to be represented in the next generation, and the organisms we see today are descendants of those that edged out their rivals in contests for mates, food and dominance.” This might be a reasonable statement for a college freshman before taking a biological anthropology or evolution course, but not a Harvard professor who often writes about human evolution. He then tells us that “evolution left us with another burden: our cognitive, emotional, moral faculties are adapted to individual survival and reproduction in an archaic environment, not to universal thriving in a modern one,” — a  statement that the last 40 years of anthropology, behavioral ecology, neurobiology, social psychology, and human evolutionary studies resoundingly refute. But as Pinker relies on the decades old works of Richard Dawkins and a cluster of Evolutionary Psychologists to inform his views on evolution, this is not too surprising. Contemporary understandings of evolution are diverse and complex, with multiple modalities, and levels, of evolutionarily processes affecting structure, function, adaptation, inheritance and change (eg. Laland et al. 2015, Jablonka and Lamb 2014). An absurdly simplistic representation of evolution underpins much in Pinker’s thinking about the world setting the stage for his “understandings” of human processes.

As an example, on that same page (25), Pinker tells us that poverty “needs no explanation. In a world governed by entropy and evolution, it is the default state of humankind.” What does this statement even mean? His working use of the term “poverty” is basically a measure of relative economic status and access to material goods, nothing about life history and development, navigating structural violence, and experiences of identity, community and history. And while he does spend a lot of time on measures of “happiness” in the book, he does so at mainly national levels and ties it to political and economic systems, ignoring a wide swath of social psychological and ethnographic data on the topic. How one could seriously think to create and use a definition of “poverty” that stretches across all of human history and have it measure something valuable (and viable) boggles the imagination.

In chapters 4-18 Pinker lays out the data and interpretations in support of his claim that we (all humanity) are healthier, wealthier and happier than ever before, and that it is due to a specific suite of philosophical, political, economic and scientific advances emerging mainly from the European-North American cultural landscape. He marshals a large number of graphs that demonstrate technological and structural improvements in many areas over the last 300 years. But he never engages with the corollary impacts, social, psychological, and structural, on humans, on other animals and on landscapes of these aspects of progress. There is, in these pages, much interesting information about GDP, changing health patterns, technological advances, and even something called “gross world product” (presented in my favorite meaningless graph on pg. 81), but much of it hangs in the air without any critical appraisal or real context. For example, after discussing inequality, via an extensive reliance on the Gini index, he concludes that “the rich have gotten richer, but their lives haven’t gotten that much better. Warren Buffet may have more air conditioners that most people, or better ones, but by historical standard the fact that a majority of poor Americans even have an air conditioner is astonishing” (pg 119, italics his). And effectively disregards the violence of inequality by letting us know that “the lives of the poor are improving more rapidly than the lives of the rich” (pg 120).

These chapters are dense with graphs and charts and references to economists and a range of other geo-political, economic, and population level social research. But there is little context, and no attempt to understand how these analyses intersect with patterns and processes of structural violence, of racism, sexism, and disempowerment, the building and collapsing of colonial empires and the enslavements, forced movements, cultural obliterations, and genocides of many populations across the past ~300 years. In an effective understanding of the human condition these things cannot be discounted. Pinker does nod in a few places, to the fact that there are bad things and times in the world, but in a very facile and limited way, always noting that if we hang in there, they too will get better.

Pinker seems in awe of the wonderful image of the right side of a chart or graph plot sweeping upward towards the sky, but never truly engages with what that two-dimensional image might actually mean for the diversity of humans involved, and how such representations manipulate reality to conform to specific, and often simplistic, parameters. Pinker’s fervent reliance on graphs and statistics is particularly interesting given that a group of colleagues and I (Oka et al. 2017) recently published an article with a wide range of data sets and mathematical analyses, in concert with graphs and charts, to demonstrate that a key assumption of Pinker’s previous book (decreasing violence measured via war deaths over time) was not supported. When a writer for Science magazine asked Pinker for comment about our article he responded “Fitting numbers to an equation in this way gives only a narrow look” and that what we did was just “a statistical gimmick.”

Why does this matter for anthropology? Because Pinker’s book is already a best seller being read by tens of thousands of people and many of the reviews laud his truly “scientific” perspective and his daring stance against the progressophobes, lefty intellectual zealots, religious fanatics, and naysayers of the world. Pinker explicitly disregards or dismisses much of the realities that anthropologists work in, against, and for. For example, in his simplistic glorification of progress, and his version of science, he even goes as far as to downplay the horrors of the Tuskegee experiment as simply a “one time error to prevent harm to a few dozen people” (pg 401). His world-view and his apologetics for colonialism, empire, racism, structural violence, etc… have direct impacts on the ways in which his readers see, experience and believe the world to be. His message is crystal clear: trust in markets, western style-governments, technology, and “science” and all will be fine. This is in direct opposition to much of what anthropological knowledge reveals about the world.

I realize this is a harsh critique. I should note that at the same time I was reading Pinker’s book I was reading James Baldwin’s Dark Days collection of essays and preparing a series of six lectures on human evolution, biology, culture and the human capacities for imagination and belief. It was precisely this context that made me so very aware of how “Enlightenment Now” reflects Pinker’s lack of knowledge about evolutionary process and complexity in human history, and his utter lack of connection, and empathy, with the experiences, histories and realities of people who are not just like him.

Reading the whole book one is left asking for who is this “scientific and humanistic progress” working such that things are really ok and increasingly getting better? Not the Oglala Lakota, the Tsitsistas/Suhtai (Cheyenne), or countless other indigenous societies across the planet who have been stripped of their land, history and rights. Not for those minority groups in the USA, in Myanmar, and across many of the world’s nations, who are discriminated against, incarcerated, and disenfranchised at levels massively above those of their co-citizens. Not for countless women across the planet, including those in the west, who are routinely discriminated against, denied equal value and attacked and abused with astonishing frequency.

No, Pinker is writing this book for himself and those who share his world and world view. Case in point: when one of the richest people in the world (Bill Gates) and one of the most prominent public academics in the world (Steven Pinker), both of whom are white men, chatted about “humanity” for the New York Times they stated, without irony, that today more than ever “we’re living longer, with greater wealth, peace and equality, and less racism and sexism.” This says a lot about who wants reassurance that the “bad stuff” is not so bad. The point of Enlightenment Now is to convince us that if we just keep to that which made the world great for Pinker and Gates then everything, and everyone, will be just fine. Just fine.

 

Agustín Fuentes is the Edmund P. Joyce C.S.C. Professor of Anthropology at the University of Notre Dame. His current research includes processes and patterns in human evolution, ethnoprimatology and multispecies anthropology, evolutionary theory, and interdisciplinary approaches to human nature(s). Recent books include Race, Monogamy, and other lies they told you: busting myths about human nature (U of California), Conversations on Human Nature (with Aku Visala, Routledge), and The Creative Spark: how imagination made humans exceptional (Dutton).

Mapping new voices: Towards a Latin American perspective on Global Mental Health by PLASMA

16 Mars 2018 - 5:17pm

This article describes the creation of a collaborative initiative started by PhD students interested in mental health issues in Latin America. It reports on its first workshop “Mapping new voices. Towards a Latin American perspective in Global Mental Health” held at the Maison de Sciences de l’Homme in Paris on the 26-27 of June 2017. The article is collaboratively authored by the members of the Platform for Social Research on Mental Health in Latin America (PLASMA). They are (in alphabetical order):  

Gabriel Abarca (King’s College London, UK)

Sofía Bowen (King’s College London, UK)

Elaine Flores (London School of Hygiene and Tropical Medicine, UK)

Álvaro Jiménez (Université Paris Descartes, France)

Claudio Maino (Université Paris Descartes, France)

Cristian R. Montenegro (London School of Economics, UK)

Felipe Szabzon (École des Hautes Études en Sciences Sociales, France)

Norha Vera (King’s College London, UK)

 

The call for scaling up mental health services in Low and Middle-income countries, initiated by Euro-American psychiatrists and institutions during the early 2000s, has received “mixed reviews”. A significant amount of literature has emerged to interrogate the underlying motives and affinities of the Movement for Global Mental Health (Campbell & Burgess, 2012; Summerfield, 2012). Alongside important gains in mobilising attention and resources to scale up mental health services in the global south, the imposition of western modes of thinking and acting upon human suffering across cultures have been especially contested (Mills, 2014; Mills & Fernando, 2014).

Beyond these controversies – or probably because of them – the notion of global mental health has gained ground, becoming an irreversible descriptor of contemporary policy practices and aspirations and producing an on-going discussion that involves different voices and disciplines. In June 2016, one such conversation started. A small group of PhD students in the social sciences gathered to discuss and debate their projects on mental health in Latin America. Several things became clear: 1) although the Movement for Global Mental Health had become ubiquitous in academia, somehow Latin America did not seem to be part of its focus; 2) the social sciences have only had a minor role within this field of study; and 3) epistemological and political questions were hardly considered in the main calls for action and research (Lancet 2007, 2013).

 

Platform for Social Research on Mental Health in Latin America (PLASMA)

These questions laid the ground for further reflexion and networking. The group started to get in touch with different doctoral students and early career researchers working in the social sciences and sharing an interest in Latin America’s mental health issues and policies. Eventually a team of eight doctoral students from Latin America was formed. We come from diverse training backgrounds in anthropology, sociology, epidemiology and psychology and are based in different universities in London and Paris. We are currently conducting research in or about Chile, Brazil, Peru, Colombia and Argentina. The outcome of this process was the creation of the Platform for Social Research on Mental Health in Latin America (PLASMA).

An initial concern for us was the need to highlight the specificities and diversity of Latin America vis-à-vis the universalistic ambitions of global mental health, adopting a critical and comparative perspective of the region. That is, highlighting how political, cultural and social processes find expression in the mental health issues affecting the area, and in their description and intervention. Some questions emerged: How can the singularities of Latin America (i.e. particular modernisation processes, forms of inequality, social conflicts and political violence) be included in the study of the globalisation of psychiatry and mental health? Does “globalisation” influence the expert and lay descriptions and approaches to human suffering in Latin America? The persistent outcome of these deliberations was the recognition of the complexity of Latin America, and the desire to extend and enrich the conversation.

PLASMA wants to be a space for students and early career researchers to exchange ideas and collaborate. It aims to explore how the historical and socio-political characteristics of the region play a part in the way mental health problems are framed, acted upon and experienced. Based on this, the aim is to engage in a critical discussion about global mental health’s epistemic and political characteristics.

 

Workshop: “Mapping new voices. Towards a Latin American perspective in Global Mental Health”.

A call for papers was drafted, and several funding opportunities were approached. The call had a positive response, and 27 abstracts were received. Abstracts were evaluated by a scientific committee which included prominent scholars in the field. Ten papers were selected and distributed across four thematic sessions: 1) “Historical mental health issues in Latin American countries”; 2) Challenges for mental health policy in the region” 3) “From diagnosis to experience: Different voices, different approaches” 4) “Global tendencies, local realities: Global Mental Health and Latin American perspectives”.

The two-day workshop was titled “Mapping new voices: Towards a Latin American perspective in Global Mental Health”, and it was held at the Maison de Sciences de l’Homme in Paris. It included the presence and support of a group of scholars that had both participated and critically engaged with global mental health. Anne Lovell gave a talk on metrics in this field; Catherine Campbell on community mobilisation, agency and social change in the mental health field; and Clara Han on subjective and social experiences on death and violence in Chile. China Mills, Livia Velpry and Ursula Read gave commentaries and prompted the debate further. The workshop ended up with a collective discussion led by the PLASMA group called “Towards a Latin American perspective on Global Mental Health”.

 

Key questions and themes that emerged in the workshop

During the different sessions of the workshop and throughout the varied topics and cases discussed, PLASMA’s original key questions remained present: How do the particular epistemologies, knowledge, practices and experiences on mental health taking place in Latin America enter in dialogue with the debate about global mental health?

Anne Lovell provided a framework to understand the kinds of transformations leading to the emergence of the Movement for Global Mental Health. According to her presentation, a set of metrics such as the Global Burden of Disease (GBD) and the Disability-Adjusted Life Year (DALY) had laid conditions and rules for conceiving mental illness on a global scale. This framework provides local and regional actors of low and middle-income countries (LMIC) access to resources but introduces at once new forms of governance. Through a global mental health framework, dominant agents create the standards for “forensic profiles”, evaluating countries’ capacities to generate reliable numbers on mental health. She also showed how, in this process, “disability” became the standard measure of all diseases, bringing new visibility to mental disorder. This, however, mostly focusing on their negative effects on individual productivity rather than in others aspects of an individual’s life.

China Mills’ comments to Anne Lovell’s presentation focused on the impacts of the Movement for Global Mental Health on local policies and politics in LMIC, prompting the participants to contemplate the dangers of standardisation, objectification and neglect of local epistemologies and experiences.

The presentations in both days of the workshop addressed to a greater or lesser extent these kinds of concerns, and the potential impacts of the global mental health agenda in the Latin American region. These papers presented cases from Brazil, Chile, Colombia, Cuba, and Ecuador, which all highlighted the value of local experiences and epistemologies on mental health, according to their different historical, political, cultural and economic backgrounds.

Although Latin America is not a homogenous region, the presentations revealed the existence of common elements at the level of policy and practice. These differences and similarities are vital for recognising the region’s complexity and its particular input in the international debates on global psychiatry and mental health.

In the following section, these contrasts and commonalities are summarised in four transversal themes: (1) psychiatric epistemologies and public policies on mental health; (2) socioeconomic dimensions and mental health; (3) subjectivities and local experiences on mental illness; and (4) agency and community mobilisation.

 

1. Latin American psychiatric epistemologies and public policies on mental health

Maria Castro and Steve Melluish’s presentation showed to what extent the societal function and ethical scope of psychology and mental health policies in Cuba differed from other countries in the region. Papers by Sebastian Fonseca, Marcelo Valenzuela, Nicolas Morales, Karla Ramirez and Khalil Rujana, on the other hand, demonstrated the existence of similar mental health policy processes across the region, rooted in epistemological tendencies coming from Europe and elsewhere.

All these presentations highlighted the need to reclaim the value of local intellectual traditions in mental health, including social medicine and politically oriented psychoanalysis; as well as the social science disciplines’ and mental health professionals’ historical commitment to the vulnerable, the poor and the victims of violence.

 

2. Socioeconomic contexts and mental health

Many of the papers emphasised how policy and practice were intertwined with social, economic, political and cultural contexts. These contexts are crucial to understanding how policies work (or fail to do so), and how specific groups experience “illness”. But beyond this sheer diversity, the presentations and discussions allowed for the identification of a series of common factors and challenges such as the political, cultural and economic aftermath of dictatorships; political and structural violence; issues of urbanisation, inequality and segregation; and the marginalization of indigenous knowledges and practices regarding mental well-being and suffering.

Manuel Capella and Sushrut Jadhav’s presentation illustrated how the presence of mental health issues challenges mental health policies in Ecuador amidst a context where structural and cultural violence looms, and where many multiple notions of “wellbeing” coexist. Likewise, Karla Ramirez and Khalil Rujana highlighted the intricate relationship between political violence, mental health and problems of policy implementation in Colombia. Overall, there was consensus to comparatively assess the impact of those processes upon policies through social research.

 

3. Subjectivities and local experiences on mental illness

A third transversal theme concerned subjectivities and local experiences of mental illness. Clara Han, in her keynote presentation, carefully analysed how mourning, distress and care are expressed in the ordinary lives of people living in contexts of structural violence, poverty, and inequality. Drawing on her current ethnographic work with families in a low-income neighbourhood under police occupation in Santiago of Chile, she detailed the ways that children come to learn kinship in a setting of pervasive death. She described how the process of re-making their world and kinship is woven by a complex interplay of death and life, absence and presence.

Livia Velpry made an insightful comment on the originality of Clara Han’s anthropological work as she approaches mental health from the texture of ordinary life, rather than framing it through a care institution. According to Velpry, Han highlights how loss and care are woven into family relationships and everyday tensions, while at the same time, revealing the moral dilemmas of the Chilean neoliberal society.

Other papers were also focused on the encounters of experts’ practices and knowledge with survivors of political violence (Gina Donoso), refugees (Gesa Duden), and of people diagnosed with mental illnesses (Alejandro Castro). These presentations demonstrated growing attention towards how mental health embodies critical moral dilemmas, how subjects act and think in particular ways in different places, and how psychiatric knowledge, practices and performativity enable the formation of new subjectivities.

 

4. Agency and community mobilisation

In her keynote presentation, Catherine Campbell drew on her extensive work on community mobilisation on health and mental health. She focused on how researchers and professionals can work alongside affected communities to create health-enabling contexts, considering available examples of both success and failure. Community mobilisation and processes of collective empowerment are a recognisable feature of Latin America’s intellectual and practical approaches to social problems. For this reason, her words, and the comments given by Ursula Read, profoundly resonated with the audience.

The discussion expressed a keen awareness of the need to inform mental health practices with participatory and democratic principles. This was illustrated in some papers by the positive outcomes of users’ struggles against institutional powers, in a context of a predominantly top-down policy implementation. At the same time it was pointed out that the existence of participatory mechanisms doesn’t prevent the emergence of standardized procedures ensuing from the negotiations between patients’ associations, insurances, pharmaceutical companies, medical institutions, and other relevant actors.

In the last roundtable, in which all participants were invited to speak up and provide ideas for PLASMA’s next steps, the need for participatory spaces that include the perspective of service users and indigenous people was highlighted. To acknowledge these aspects means to problematize how and when different kinds of evidence are produced, for whom and for what purposes.

 

Conclusions

This meeting established a common working route and some challenges around the role of the social sciences in the mental health field. The presentations and conversations shared a concern about the problematic simplification of subjective problems operated by international standardised frameworks. In light of this, the social sciences can restore the complexity of individual suffering while at the same time, providing a better understanding on how local epistemologies and political commitments are intimately connected with mental health conceptualisations and practices.

However, it is also relevant to recognize that the globalisation of mental health discourses and interventions provides an opportunity to enable a different relationship between global and the local scales. Such relationships could allow regions that are usually taken as recipients of knowledge and interventions to re-emerge as sources of knowledge, conceptualisations and interventions around human suffering and social adversity.

The challenge is to create a body of research that translates the abovementioned tensions in their theoretical, methodological and empirical aspects. If done correctly, Latin America could become a crucial region for studying the globalisation of psychiatry and mental health and the role of local systems of values and collective representations shaping mental health and ordinary life. This first workshop was a small step in that direction.

As for the broader challenges ahead, PLASMA’s goal is to become a collaborative and synergic space from which researchers and institutions from diverse countries can expand the possibilities of social scientific research into mental health issues in the region.

Reaching Out, Looking In: On Research, Refusal, and Responsibility by Tess Lanzarotta

7 Mars 2018 - 10:53pm

The papers in this series, “Critical Histories, Activist Futures,” have captured some of the exciting conversations that took place during a conference titled “Critical Histories, Activist Futures: Science, Medicine, and Racial Violence,” which was held at Yale University in February 2017. As my colleague Sarah M. Pickman has explained, the conference was intended to create a space for discussions surrounding “historical cases of past injustices,” but also to generate “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.”[1] I want to use this opportunity to explain how my involvement in the conference – as one of the organizers and subsequently as a co-editor of this series – has shaped my understanding of my responsibilities as a historian.

I’m using the term “responsibility” here consciously, because I want to suggest a consideration of culpability (what am I responsible for?) and obligation (who am I responsible to?), as well as trustworthiness (am I viewed as responsible by those I am obligated to?). For me, as a white settler woman from Canada who studies at an elite American university and whose research involves Indigenous peoples, this has meant examining my own research practices and thinking through what it means to engage ethically with Indigenous communities. My own experiences have brought into focus how hard this task can be, but also how necessary it is.

In the first half of this piece, I discuss one of my failed attempts engage a community outside of the academy. This experience helped me to understand that research outreach, by which I mean traveling to potentially interested communities to share one’s findings, was a limited model for ethical engagement. It also allowed me to see that institutional forces, like the “engagement” or “broader impacts” sections of grant applications, had shaped my sense of my own ethical obligations. The desire to engage is a laudable one, but it risks reproducing historical injustices and lingering power imbalances that still shape research encounters. In the second half of this piece, I elaborate on how the conversations generated during “Critical Histories,” both the conference and this series for Somatosphere, have helped me reconstitute the imperative to “reach out” by “looking in” and considering what responsibilities I have as a historian of biomedicine towards addressing these structural issues.

 

1. Reaching Out

In June 2017, I flew to a village on Alaska’s Arctic coast to give a research outreach presentation. I was planning to speak about my dissertation, which focuses on the history of biomedical research in Cold War Alaska, to elicit feedback and share some archival findings that I thought might be relevant and interesting for members of the community. However, when the time for my presentation arrived, I found myself sitting in an empty library conference room. No one had come. Feeling frustrated and embarrassed, I left the library and went for a drive along the water to clear my head.

For several reasons, I’d suspected that the presentation might not go well. My work isn’t “community-based” in the strictest sense. It addresses events that involve many scattered and diverse Alaska Native communities, and primarily analyzes the actions of networks of health professionals, researchers, activists, and politicians. I’ve worked with and learned from a number of Alaska Native researchers and activists as my project has taken shape, and I’ve benefitted enormously from their insight and encouragement. I certainly feel that I’m accountable to them and that I should be respectful in how I relay (or don’t) the stories that they’ve told me. But my Indigenous interlocutors don’t constitute or even represent a single community that I could visit and report to.

The village I visited is important to the story that my dissertation tells, but it’s not the sole subject of the project and I hadn’t done any archival research or ethnographic fieldwork there. It’s also a place that has historically had a rocky relationship with outside researchers. Like many Indigenous communities in Alaska, particularly in the Alaskan Arctic, it was seen by Cold War scientists as a “natural laboratory” for the study of human physiology and adaptation.[2] I’ve studied this history, and tracked the relationships, sets of expectations, and forms of expertise that were generated during these research encounters. I’ve thought a lot, then, about the impact that exploitive, unethical research has had on Alaska Native communities. I have also become acutely aware of the fact that my work could reproduce the very same problematic research dynamics that I examine and critique.

Still, even knowing all of this, I didn’t have much of a plan for what I would do if my presentation wasn’t well received or if it wasn’t received at all. Initially, I oscillated between a catastrophic response (“My research is problematic and I should probably quit!”) and a dismissive one (“No one wanted to come to the library because the weather was perfect! This isn’t about me!”). Neither of these ways of thinking proved to be particularly helpful.

Perfect weather on the coast of the Arctic Ocean

Arriving back home in New Haven, I confided in colleagues and friends about what had happened. I was surprised to find that they mostly regarded my experience as unremarkable. Many of them had their own stories about times when they’d reached out to communities, either to request participation or to share research results, and received silence in response.[3] After reflecting on these conversations, I’ve come to realize that such incidents aren’t catastrophic, but that they also shouldn’t be dismissed as insignificant stumbling blocks in the research process.

Moments when research subjects place limitations on their engagement with researchers, Mohawk anthropologist Audra Simpson has argued, aren’t “stops, or impediments to knowing,” but instead can be “expansive in what they do not tell us.” These “refusals,” the moments when we’re compelled by our research subjects or by our own ethical sensibilities to limit our inquiries, aren’t obstacles to be overcome.[4] When viewed this way, a lack of response can actually be very informative. But what had I been informed of? What could I learn from the particular refusal that I’d been met with? As I struggled with these questions, I began to question why I’d attempted to do research outreach in the first place, and whether my responsibilities ended with the attempt.

To be clear, my aim here is not to imply that research outreach is a bad practice or to suggest that historians and other researchers should abandon it. Indigenous peoples have issued critiques of researchers who’ve built knowledge, and their careers, by studying Indigenous communities, but who’ve failed to include those same communities as partners in the research process.[5] Institutionalizing research outreach has been part of the response to this set of grievances and demands. One need only look to Ian Mosby’s remarkable work on the history of medical experimentation in Canadian residential schools, and his involvement in the recent Truth and Reconciliation process (often as a vocal critic), to see that sharing research findings can be incredibly important both for historians and for Indigenous communities.[6] Nonetheless, I think it’s dangerous to uncritically accept the usefulness of research outreach without considering what kinds of personal and institutional commitments should accompany it.

On one hand, it’s perfectly reasonable for funding organizations, like the one that paid for my trip to the Arctic, to insist that researchers share their results with (potentially) concerned communities. But, on the other hand, it’s troubling to think of research outreach as merely a box to tick on a funding application – “yes, I went to the village, so I did my part” – because that transforms outreach into a narrowly-conceived requirement, instead of an indication of a deeper commitment. I felt obligated to do research outreach not because it seemed to be indicated by my research or desired by any specific community, but because it was required by my funders. It also seemed to me that I wouldn’t be considered “authentic” by the community of researchers who study the Far North unless I went to an Indigenous village. I’d been asked again and again (by other white people) “when” I was going to go. I think that this questioning was well-intentioned and was meant to encourage me to adhere to the ethical practices that have become standard in the field.[7] However, non-Indigenous researchers had rarely asked me, for instance, how often I cited Indigenous scholars or whether I’d been involved in critiquing my own institution’s relative lack of Indigenous faculty.

Despite the good intentions undergirding the enterprise, I’ve come to believe that research outreach often does little more than give an ethical gloss to what Morgan Moffitt, Courtney Chetwynd, and Zoe Todd have called “The Northern Research Industry.” Todd, a Métis anthropologist reflecting on her own refusal to engage in further research in the Far North, has noted that “collaboration in some cases is really just a buzzword rather than a guiding ethos or principle rooted in… ‘ethical relationality.’”[8] When she mentions “ethical relationality,” Todd is referencing the work of Cree scholar Dwayne T. Donald, who has described ethical relationality as a mode of engagement that “seeks to more deeply understand how our different histories and experiences position us in relation to each other.”[9] This way of thinking about research encounters, whether they be interviews, ethnographic observations, or outreach presentations, calls upon researchers to think reflexively about their own position relative to those they are studying. My lack of attention to positionality had allowed me to think of a settler-designed strategy of research outreach as my sole ethical responsibility, even though outreach wasn’t something that the community wanted from me.

 

2. Looking In

In her introduction to this series, Sarah pointed out “that ultimately, one of the biggest logistical hurdles to making… [“Critical Histories”] as inclusive as possible was its location at Yale University.”[10] As we planned the conference, we quickly realized that Yale was seen by many, both inside academia and outside, as too hostile a space to appropriately stage any kind of radical conversation about racial violence in science and medicine. Yale had not always had positive relationships with the communities that surround it.[11] A group of panelists representing the Yale School of Medicine and various New Haven community organizations spoke about their joint effort to redress this issue by developing Community-Based Participatory Research (CPBR) projects that would could mutually benefit Yale researchers and New Haven residents. However, they made it clear that this kind of work necessitated long-term commitment and a willingness to engage in conversations that were sometimes difficult.[12]

During the CPBR presentation, I was particularly struck when the panelists mentioned that some Yale researchers found it frustrating that the residents of nearby communities didn’t trust them. These researchers had sometimes expressed that they wished that these communities, which are largely African American, would “get over” Tuskegee.[13] It’s not enough to recognize that such thinking is problematic. Sociologist Ruha Benjamin has recently argued in favor of shifting focus from analyzing the “distrust” of racialized communities towards institutionalized medicine to examining “the relative trustworthiness of biomedical initiatives and institutions.”[14] Benjamin suggests that we think of the reluctance of racialized communities to engage with researchers as “informed refusal,” which is “a necessary corollary to informed consent.”[15] Reflecting on the CBPR panel through my reading of Benjamin’s work, I began to realize that I’d spent, as I’ve mentioned, plenty of time thinking about why Alaska Native peoples didn’t trust researchers, but hadn’t given much thought to whether the institutions and communities that I represented were worthy of trust and whether I could do anything about that.

Increasingly, I’ve realized that one of my primary responsibilities is to use the privilege I have in an effort to make academic institutions and the field of the history of science and medicine less hostile to Indigenous peoples and other people of color. This is hardly a straightforward task; however, I’ve been fortunate to learn from the many participants in Critical Histories, and from the work of Indigenous feminist scholars, that it’s also a task that can be taken on in many different ways. I want to echo Sarah in quoting our colleague Amanda Joyce Hall, who pointed out during the conference’s lunchtime roundtable that “activism should be understood not as a discrete activity but a daily and continuous set of practices.”[16] My aim, then, must be to think about how I can exist in academic spaces in ways that consistently reflect my sense of responsibility. My obligation to the communities that I study is not something that I perform merely by flying to the Arctic for one short trip to disseminate knowledge, it’s something that I have to do every day in the ways that I write, teach, and advocate within the university.

For me, this has meant citing the work of Indigenous scholars as the primary theoretical basis for my work and assigning the work of Indigenous scholars, writers, and artists on the syllabi that I design. As Zoe Todd explains in her critique of the so-called “ontological turn,” non-Indigenous scholars in Science and Technology Studies have often erased or coopted Indigenous ontologies and epistemologies and the work of Indigenous scholars.[17] The work of making this point should not fall solely on Indigenous scholars, nor should Indigenous critiques of science and medicine and of the disciplines that study them be treated as afterthought addendum to the “real” canon. Kim TallBear, an Indigenous Science and Technology Studies scholar, has written about her choice to maintain a blog and be discerning about where she speaks and publishes with the goal of reaching scientific audiences and encouraging them to adopt “a more democratic vision of what the bio-scientific disciplines can be,” while also establishing herself as a “useful resource for indigenous scientists.”[18] My own career is just beginning, but I am trying to learn from TallBear’s example. So far, this has meant ensuring that some of my research findings are published in digital, open-access form, so that they’re readily available to communities that might have an interest in my work. I am also exploring the possibility of sending copies of my dissertation to libraries in Alaska Native villages.

During her presentation at “Critical Histories,” Mary X. Mitchell remarked that the things we might want to do, as graduate students and junior scholars, to be responsible to the communities we study are not necessarily the things that bring professional rewards. This can be a difficult sacrifice to make and sometimes puts us in the position of waiting to form collaborative relationships with communities outside of academia until we can afford it professionally and financially, and until we can be sure that we’re in a position to offer any kind of long-term commitment.[19] It’s therefore crucial to call upon institutions and senior scholars in our field to reconsider what’s rewarded by hiring and tenure committees. As Mary puts it, “academic institutions and senior historians should begin valuing deeper collaborations—with affected communities, with scientists, with policymakers, and beyond.”[20] When I came back from the Artic, it was Mary who reminded me that the timescale of outreach is not the same as the arc of an academic career. Just because I’d been refused, she told me, didn’t mean that I always would be. And, it was up to me to figure out what I needed to do in the meantime.

My own approach to these issues is still evolving, but my future aspirations have changed considerably as I’ve begun to think more broadly about my responsibilities. Unangax scholar Eve Tuck, who’s doing important work to educate university instructors across Canada on how to mentor Indigenous students, recently pointed out that “University administrators say “Indigenization’ and what they mean is, simply bringing more Indigenous people into the same structures, into the same buildings without much thought about what universities can learn from Indigenous communities.”[21] At “Critical Histories,” Kerri J. Malloy and Amy Sprowles’ presentation on the Klamath Connections project, which brings STEM students into nearby Indigenous communities to learn how they collect and use scientific data to protect their lands and manage their resources, seems to provide one such model. These same students are enrolled in Indigenous Studies classes and so are asked to confront the stereotypes they might hold about Indigenous peoples. In doing so, the program frames justice-oriented scientific practice as something that students can learn from Indigenous communities.[22] This work has helped me to imagine different ways of “reaching out.”

Recently, I’ve been starkly reminded of the responsibilities that come with working at the intersection of Indigenous Studies and the history of science and medicine. In February 2018, after Gerald Stanley, a white man, was acquitted for the murder of Colten Boushie, a young member of the Red Pheasant Cree Nation, Indigenous faculty and non-Indigenous allies from universities across Canada signed an open letter calling upon their colleagues, particularly their non-Indigenous colleagues, to address the pain and suffering caused by this gross miscarriage of justice.[23] The subsequent acquittal of Raymond Cormier, another white man, for the murder of Tina Fontaine, a teenage First Nations girl, has led to further protests, as well as to calls for Canadian universities to address their role in perpetuating structural violence and racism against Indigenous peoples.[24] The “Justice for Colten Open Letter,” for instance, calls for curriculum reform that would institutionalize “required critical anti-racist and anti-colonial graduate and undergraduate courses” and support for teaching that “recognizes and validates Indigenous knowledge systems and pedagogies.”[25] Transforming academic institutions into non-violent, decolonial spaces will take an enormous commitment and effort – from everyone, not just from those who study or who are members of racialized communities – but historians of science and medicine are well-positioned to take a leading role in this process. [26]

The Stanley and Cormier verdicts have made it undeniably clearly that Canadians (and other white settlers) are ready and willing to excuse themselves from taking responsibility for ongoing colonial violence. I’m therefore grateful for my failures and for having been refused, insofar as those experiences have forced me to more fully confront the violence implicit in the institutions I occupy and the historical legacies I’ve inherited. As my sense of my responsibilities takes shape, I continue to rely on my community of likeminded friends and colleagues who challenge me on what my responsibilities are and offer me suggestions on how I might more fully meet them. Reflecting on failures, refusals, and mistakes is an uncomfortable and difficult task, but it’s a crucial a part of this process. As Mary has pointed out, “discomfort and cost” are “important signs of the ethical and political stakes of historical work.”[27] At the end of “Critical Histories, Activist Futures,” my colleague Ashanti Shih and I delivered closing remarks. We wanted to offer a brief summary of the generative conversations that had taken place during the conference, but also acknowledge where we’d fallen short. Ashanti concluded with an important reminder, one which had been raised several times over the course of the day: “There is no doubt that we will fail and be humbled,” she said, “but that doesn’t mean we shouldn’t continue to do the work.”[28] In short, if we want to imagine more just futures, we have to commit to “staying with the trouble.”[29]

 

Tess Lanzarotta is a PhD Candidate in the Program in the History of Science and Medicine at Yale University. Her work focuses broadly on the history of circumpolar health during the Cold War. Her dissertation, titled “Unsettling Biomedicine: Research, Care, and Indigenous Rights in Cold War Alaska,” explores how biomedicine came to serve as both a source of colonial power and as a site from which Alaska Native peoples could exercise self-determination. Her work has been supported by the National Science Foundation, Social Science Research Council, and the Social Sciences and Humanities Research Council of Canada. You can find her on twitter @TessLanzarotta

 

Notes

[1] Sarah Pickman, “Critical Histories, Activist Futures: Science, Medicine, and Racial Violence,” Somatosphere, 11 September 2017. http://somatosphere.net/2017/09/critical-histories-activist-futures-science-medicine-and-racial-violence.html

[2] On this pattern see Matthew Farish, “The Lab and the Land: Overcoming the Arctic in Cold War Alaska,” Isis vol.104, no. 1 (2013): 1-29; Joanna Radin, Life on Ice: A History of New Uses for Cold Blood (Chicago: University of Chicago Press, 2017).

[3] For example, see Joanna Radin, “Digital Natives: How Medical and Indigenous Histories Matter for Big Data,” Osiris vol. 32, no. 1 (2017): 43-64.

[4] Audra Simpson, “On Ethnographic Refusal: Indigeneity, ‘Voice’ and Colonial Citizenship,” Junctures 9 (December 2007): 78. See also Audra Simpson, Mohawk Interruptus: Political Life Across the Borders of Settler States (Durham: Duke University Press, 2014).

[5] Such critiques have been ubiquitous. For a discussion of the Alaskan context specifically, see Vanessa Hiratsuka, Jennifer Brown, and Denise Dillard, “Views of Biobanking Research Among Alaska Native People: The Role of Community Context,” Progress in Community Health Partnerships: Research, Education, and Action vol. 6, iss. 2 (Summer 2012): 131-139.

[6] Ian Mosby, “Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952,” Histoire sociale/Social History XLVI no. 91 (2013): 615-642; Ian Mosby, “Of History and Headlines: Reflections of an Accidental Public Historian,” Activehistory.ca, 29 April 2014. http://activehistory.ca/2014/04/of-history-and-headlines-reflections-of-an-accidental-public-historian/

[7] For an example of these norms, see Andrew Stuhl’s discussion of his methods in Unfreezing the Arctic: Science, Colonialism, and the Transformation of Inuit Lands (Chicago: University of Chicago Press, 2016). On the development of ethical standards for research in the Far North, see Fae L. Korsmo and Amanda Graham, “Research in North American North: Action and Reaction,” Arctic vol. 55, no. 4 (2002): 319-328.

[8] Morgan Moffitt, Courtney Chetwynd, and Zoe Todd, “Interrupting the Northern Research Industry: Why Northern Research Should be in Northern Hands,” Northern Public Affairs, 3 December 2015.

[9] Dwayne Trevor Donald, “Forts, Curriculum, and Indigenous Métissage: Imagining Decolonization of Aboriginal-Canadian Relations in Educational Context,” First Nations Perspectives vol. 2, no. 1 (2009): 6.

[10] Sarah Pickman, “More than Local Arrangements: How Conference Logistics Can Speak to Values,” Somatosphere, 12 September 2017. http://somatosphere.net/2017/09/more-than-local-arrangements-how-conference-logistics-can-speak-to-values.html

[11] Ibid.

[12] Alicia Agnoli, Courtney McMickens, Natasha Ray, Barbara Tinney, Elizabeth Samuels, “Community Based Participatory Research: The Good, the Bad, and the Ugly” (presentation, Critical Histories, Activist Futures: Science, Medicine, and Racial Violence, New Haven, CT, February 24-25, 2017). See also 10 Years of Making a Difference: 2005-2015, A Journey in CPBR with the Yale RWJF Clinical Scholars Program and the New Have Community (published by the Yale School of Medicine). https://historysciencejustice.files.wordpress.com/2017/01/rwjf_csp_cbpr_report_2015.pdf

[13] Ibid.

[14] Ruha Benjamin, “Informed Refusal: Toward a Justice-based Bioethics,” Science, Technology & Human Values vol. 41, iss. 6 (2016): 970.

[15] Ibid., 982.

[16]Sarah Pickman, “More than Local Arrangements: How Conference Logistics Can Speak to Values,” Somatosphere, 12 September 2017. http://somatosphere.net/2017/09/more-than-local-arrangements-how-conference-logistics-can-speak-to-values.html

[17] Zoe Todd, “An Indigenous Feminists Take on the Ontological Turn: ‘Ontology’ is Just Another Word for Colonialism,” Journal of Historical Sociology vol. 29 (2016): 4-22.

[18] Kim TallBear, “Standing with and Speaking as Faith: A Feminist-Indigenous Approach to Inquiry,” Journal of Research Practice vol. 10, iss. 2 (2014).

[19] Mary X. Mitchell, “Bodies Unbound: Decolonizing Archives and Practices in Histories of Science and Environment” (presentation, Critical Histories, Activist Futures: Science, Medicine, and Racial Violence, New Haven, CT, February 24-25, 2017).

[20] Mary X. Mitchell, “History, Ethics, and the Environmental Archive,” Somatosphere, 12 October 2017. http://somatosphere.net/2017/10/history-ethics-and-the-environmental-archive.html

[21] “Universities don’t become different just by wishing for it: Eve Tuck on the challenge of changing academic,” CBC Radio, 26 February 2018. http://www.cbc.ca/radio/unreserved/decolonizing-the-classroom-is-there-space-for-indigenous-knowledge-in-academia-1.4544984/universities-don-t-become-different-just-by-wishing-for-it-eve-tuck-on-the-challenge-of-changing-academia-1.4547278?cmp=rss; On Tuck’s mentorship work, see Kaitlyn Balkovec, “Developing expertise in mentoring Indigenous students,” 9 February 2018. http://www.oise.utoronto.ca/oise/News/2018/Developing_expertise_in_mentoring_Indigenous_graduate_students.html

[22] Amy Sprowles and Kerri J. Malloy, “Klamath Connection and Critical Histories/Activist Futures: The Role of Interdisciplinary Discourse in Addressing Racism and Inequity in STEM Education,” Somatosphere, 26 October 2017. http://somatosphere.net/2017/10/klamath-connection.html

[23] “Justice for Celten Open letter from Indigenous Faculty and Allies.” http://www.idlenomore.ca/justice_for_colten_open_letter_from_indigenous_faculty_and_allies

[24] Jason Franson, “Deaths of Colten Boushie, Tina Fontaine spark difficult classroom conversations, professors say,” The Globe and Mail, 3 March 2018

[25] “Justice for Celten Open letter from Indigenous Faculty and Allies.” http://www.idlenomore.ca/justice_for_colten_open_letter_from_indigenous_faculty_and_allies

[26] “Critical Histories” took shape partially in response to the statements of a Yale University administrator who felt that race and ethnicity studies would not be useful for scientists See Viet N. Trinh, “On Science and Racial Violence: A Letter to Lynn Cooley,” Conversation X, 1 December 2015. http://www.conversationx.com/2015/12/01/on-science-and-racial-violence/ . The conference was intended to provide a space to consider the institutional roles that the history of science and medicine might play in larger activist projects.

[27] Mary X. Mitchell, “History, Ethics, and the Environmental Archive,” Somatosphere, 12 October 2017. http://somatosphere.net/2017/10/history-ethics-and-the-environmental-archive.html

[28] Ashanti Shih and Tess Lanzarotta “Closing Remarks” (presentation, Critical Histories, Activist Futures: Science, Medicine, and Racial Violence, New Haven, CT, February 24-25, 2017).

[29] Donna J. Haraway, Staying with the Trouble: Making Kin in the Chthulucene. Durham: Duke University Press, 2016.

Laura L. Heinemann’s Transplanting Care by Ellen Rubinstein

1 Mars 2018 - 5:24pm

Transplanting Care: Shifting Commitments in Health and Care in the U.S. 

Laura L. Heinemann

Rutgers University Press, 186 pp.

 

Heinemann’s work eschews the dramatic moment of transplant surgery in favor of detailing the transplant process as it occurs across space and time, always intertwined within the rhythms and realities of everyday life. Based on 24 nonconsecutive months of fieldwork and 100 interviews with patients, caregivers, and health practitioners in the Midwestern U.S. city of “Metrotown,” Heinemann shows how a “need” for organ transplantation emerges from a complex interplay of biological pathologies, social biographies, and structural inequalities. Building on Tim Ingold’s (2011) concept of “wayfaring,” Heinemann follows the movement of care and caring practices as people move toward, away, and through the transplant process. She situates her work within the scholarship on the feminist ethics of care, following Cheryl Brandsen’s (2006) call for a “public ethics of care” and the need for care to be treated as a shared public responsibility rather than relegating it to the private domain.

The first chapter begins with a clinical encounter as an entry point into describing how biomedicine constructs the pre-transplant body, replete with physical, emotional, and cognitive criteria that patients and caregivers must meet to become “good” transplant candidates. In chapters 2 and 3, Heinemann traces the social and material conditions that contribute to organ failure, mapping the “moral etiologies” that locate causes of disease not simply in failing organs but in failing systems of care, both personal and political.

Chapters 4 and 5 examine the overlapping roles of patient and caregiver and “reciprocal webs of care,” taking inspiration from feminist philosophers who argue against strict distinctions between people who give and receive care. It is because of their role as caregivers that some patients decide to undergo organ transplants; rather than its life-sustaining potential, transplant appeals because of its ability to help individuals maintain care for others. Conversely, sometimes it is kin’s failing health and patient status that leads to their “conscription” into full-time caring for others.

Chapter 6 describes the movement of care from home to hospital and back to home. Where medical care once fell under the purview of women working in the domestic realm, with the twentieth century rise of medical professionalization and specialization, physicians and hospitals (or clinics) took center stage as places that provided increasingly technically advanced care. More recent political and economic shifts are once again relegating care to the private realm, and Heinemann details the encroachment of biological apparatus into private domestic space. What emerges in this ambivalent blend of lay and clinical practices is a hybrid space where domestic life must be reworked to adapt to the intrusion of biomedical supplies and clinical routines.

Those who have the means to adapt are lucky, however. Chapter 7 relates the stories of a few individuals who find themselves without a supportive kin or community network. In these instances the existing gaps in the health care system become yawning chasms, with individuals denied access to transplant services because they cannot cobble together a post-transplant informal care team. Heinemann highlights the creative strategies that some employ to create kin-like bonds of obligation and responsibility where caring relations are otherwise absent. These strategies include a rethinking of gender roles, where men take on caregiving duties and find new forms of masculinity by doing so.

In her conclusion, Heinemann revisits how the increasing gaps in the health care system contribute to increasing health care disparities and makes suggestions for how social scientists and the “caring” professions (notably, not physicians) can work together to restore a failing health care system. Heinemann emphasizes how little the technical advances in medicine mean without sufficient resources to support the people who are ostensibly the focus of such life-saving technologies. As such, Heinemann’s book is a quiet but powerful indictment of the U.S. health care system, both the lack of preventive care and the neoliberalization of care, where patients and close kin become responsible for managing complex medical regimens—from transporting patients to and from appointments, to administering daily doses of immunosuppressants and other medications, to managing the medical machinery that turns home into hospital—in the absence of public assistance. With its clear and compassionate prose, Transplanting Care makes an important contribution to ethnographic insights into understandings of care, kinship, chronic illness, and the moral influences they exert upon everyday life.

 

Ellen Rubinstein is a medical anthropologist and Postdoctoral Fellow in the Department of Family Medicine at the University of Michigan. Her current research is on mental health care across clinical and community settings.

Web Roundup: In the clouds by Lily Shapiro

1 Mars 2018 - 8:30am

As I’m sure many of you saw, this month started with the successful launch of SpaceX’s Falcon Heavy, giving a boost (sorry) to privatized space travel, and providing us all with a few days of very strange photos. On that note, here is a Web Roundup about flight, flying objects, and clouds of all kinds.

Staying with the space-travel theme for a minute, this is a best guess of what life on Saturn’s moon, Enceladus, might look (if it existed).

Moving to flying animals, here is a nice review of a new book called First in Fly: Drosophila Research and Biological Discovery, about fruit flies, their use in genomic research, and the work that goes into caring for them, and attempting to translate research about them into human bodies. Very interesting from an interspecies-affinity sort of angle. In fact, just a few days later an article was published in Developmental Cell about how fruit fly fat cells respond to an injury site, here’s a synopsis in the New York Times.

A Washington Post write-up of a new research article about woodpeckers is worth taking a look at. These birds hit their heads into trees at 15 mph, up to 20 times per second, for hours each day. A rollercoaster ride will give you an acceleration of about 6 G (six times the force of gravity), at most. “Concussions occur at 90 to 100 G. A woodpecker’s head, when it connects with a tree trunk, decelerates by as much as 1,200 G.” Yet, these birds have been around for 25 million years and (although there are important differences between human and bird heads), the biomechanics of woodpecker heads and skulls have long been inspiration for the development of helmets.

“ ‘There have been all kinds of safety and technological advances in sports equipment based on the anatomic adaptations and biophysics of the woodpecker assuming they don’t get brain injury from pecking,” said Professor Peter Cumming, a neurobiologist at the Boston University School of Medicine [and one of the study’s authors]. ‘The weird thing is, nobody’s ever looked at a woodpecker brain to see if there is any damage.’ ” This new study in PLoS ONE aimed to do just that, and found a build-up of tau in the brains of woodpeckers as well. Tau is a protein associated in humans with chronic traumatic encephalopathy (CTE) and Alzheimer’s. The build-up in the birds is not necessarily indicative of damage—at some levels, the researchers say, tau can be protective, but, the results are provocative.

Shifting gears to flying machines—do delivery drones reduce emissions, and if so, how much? The New York Times proudly proclaims flying cars are coming! The Verge says, Don’t call them flying cars! They are more like quiet helicopters, and they’re probably not coming, and even if they do they probably won’t be very useful. But a bunch of tech and transport companies seem willing to spend millions on ventures into them.

Smithsonian has an interesting article on how our fears about UFOs—what exactly they are, and what they look like—change both political movements and technological changes, and Chernobyl is being transformed into a solar farm. Last, for anyone whose deepest ambition, like Arthur Weasley’s, may be to understand how airplanes stay up: this video and short article.

In light of big changes coming to data privacy regulations in Europe, here are a few timely pieces that raise questions about online privacy (and how the US is trailing Europe in terms of updating regulations). First off, Google is being taken to court in London over the “right to be forgotten.”

Marcelo Gleiser wrote an op-ed about Yuval Noah Harari’s speech at the World Economic Forum in Davos last month. Harari posits a third revolution (the first two being agricultural and industrial) that is data-driven, and in which everything a person does—all of their biodata (pulse, eyelid movement, heartrate, etc.)—can be collected (and presumably transmitted back to a government or corporations for purposes nefarious or beneficent, but, let’s be honest, probably nefarious). Gleiser, who is a professor of natural philosophy, physics and astronomy at Dartmouth College, says that, although Harari’s view probably overstates the impending gloominess, it asks important questions about who has access to and control over this data.

Speaking of which, The New York Times has a piece on how your technology use is being mined for information about your health—with or without your consent. And, the Supreme Court today began hearing arguments in United States v Microsoft, a case which is trying to sort out the logistics of where data lives and who has jurisdictional access to it. This piece in Wired details the implications of this case for data storage and data science in general. Although, to be fair, the Supreme Court case will probably be mooted by the fact that the US Congress is likely to pass the Cloud Act, which would basically serve to update laws on jurisdiction of warrants for the internet age (the law that the Supreme Court will be basing their decision on was written before the internet existed).

Palantir, the data-mining firm co-founded by Peter Thiel, apparently partnered with the New Orleans’s police department to test its predictive policing system without the knowledge of city council members, residents, or public attorneys.

 

*****

And, of course, we lost Ursula Le Guin about a month ago. Anand Pandian has a nice tribute to her in anthro{dendum}, as does The Verge. And here’s a nice long biography/interview with her in The New Yorker from 2016.

“We live in capitalism, its power seems inescapable – but then, so did the divine right of kings. Any human power can be resisted and changed by human beings.”
– Ursula K. Le Guin (1929-2018)

In the Journals, February 2018 by Anna Zogas

1 Mars 2018 - 3:07am

Here are some of the articles published in February 2018. Among them are two Special Issues I’d like to highlight: first, Social Science & Medicine brings us a Special Issue on The Role of Racism in Health Inequalities. Second, Sociology of Health and Illness is a Special Issue on Conceptualising ‘materialities of care.’ The abstracts for articles in these Special Issues are below, along with other articles of interest from the journals. Enjoy!

Cultural Anthropology (Open Access)

Unruly Affects: Attempts at Control and All That Escapes from an American Mental Health Court (open access)
Jessica Cooper

Based on two years of ethnographic fieldwork in mental health courts in the San Francisco Bay Area, this article juxtaposes the fixity that defines the legal concept of jurisdiction with the itineracy of homeless individuals judged by criminal courts. I assert that jurisdiction is an attempt at control: by invoking jurisdiction, courts attempt to fix people and objects within time and space so as to yield a narrative of liberal accountability for which defendants can be held responsible. Rather than assume the vantage point of the law, I stick with Harriet, a person who was homeless and subject to a mental health court’s attempt at control. Moving away from the law exposes when state attempts at control fail. Claims to jurisdiction reflect the state’s reliance on control through a particular chronotope of linear time and divisible space. In differently configuring time and space as cyclical and unbounded, Harriet confounds the law’s attempt at control. Further, the state’s invocation of jurisdiction as a concept that fixes time and space produces unruly affects, or coordinates of relation that escape a rule of law presenting itself as rational. Harriet’s relationships with others reflect and enable her escape from state control: they inhabit an affective atmosphere that is produced by the law’s own chronotopic terms, but that reject the individual accountability that the law understands as a product of claims to jurisdiction. In paying attention to missed encounters between Harriet and the court, this article reveals and theorizes moments in which power escapes its own terms and enters a social, deindividuated, affective sphere.

American Ethnologist 

A life worth living: Temporality, care, and personhood in the Danish welfare state
Mette N. Svendsen, Laura E. Navne, Iben M. Gjødsbøl, Mie S. Dam

Caregiving can be conceptualized as involving practices of substitution, in which doctors, nurses, and health assistants step into the subject positions of their charges in order to sustain their personhood and compensate for their reduced capacities. Fieldwork in Denmark at three sites—a neonatal intensive care unit, a research laboratory using piglets as animal models, and a dementia nursing home—shows that temporality is a key component in substitution, as caregivers imagine their charges’ temporal horizons when stimulating their personhood in the ambiguous zone between life and death. Substitution practices redirect our attention from the question of what it means to be human to what it takes to, for example, turn premature infants, research piglets, and people with dementia into beings with worthy lives.

Critical Public Health 

The pharmaceutical regulation of chronic disease among the U.S. urban poor: an ethnographic study of accountability
Susan J. Shaw

The Massachusetts experience of health care reform before the Affordable Care Act of 2010 reveals a moral economy of care in which expanded access was met by neoliberal demands for accountability and cost control. Publicly subsidized health insurance programs in the U.S. are deeply concerned with managing and regulating low-income residents’ access to and coverage for medications. By focusing our attention on the new forms of social relations invoked by specific techniques of governing, analyses of accountability can help us understand the ways in which subjectivities are shaped through their encounters with overarching social and economic structures. This paper presents qualitative findings from a four-year, prospective study that combined two waves of survey and chart-based data collection with four qualitative methods. Medicaid patients are made accountable to their medication regimens as they must track their supply and obtain refills promptly; regular blood tests carried out by health care providers verify their adherence. Both patients and their physicians are subject to cost savings measures such as changing lists of covered medications. Finally, patients struggle to pay ever-increasing out-of-pocket costs for their medications, expenses which may keep patients from taking their medications as prescribed. The fraught relationship between trust, accountability, and verification finds emphatic expression in the moral economy of health care, where the vulnerability of the sick and their hope for a cure confront policies designed to hold down costs.

‘It would have control over me instead of me having control’: intrauterine devices and the meaning of reproductive freedom 
Anu Manchikanti Gomez, Emily S. Mann & Vanessa Torres

In the past decade, enthusiasm for intrauterine devices (IUDs) has rapidly grown in the United States. Messages from health care providers, pharmaceutical advertisements, and public health campaigns extol the freedom that women can experience using a long-term, internal, highly effective contraceptive method. Little research has investigated how young women conceptualize IUDs in terms of freedom and control. We conducted a thematic analysis of in-depth, individual interviews with 37 young Black and Latina women and explored their perspectives on IUDs as promoting and constraining freedom. Participants with favorable views of the IUD (n = 13) appreciated that it would allow them to live their day-to-day lives ‘normally’ without thinking about contraception and with minimal side effects. Four current IUD users found the method empowering because they could pursue their goals without fear of unintended pregnancy. In contrast, nearly two-thirds of participants (n = 24) had predominantly negative views and focused on temporal and physical features of IUD use. They expressed concern that IUDs would impinge on their personal agency by restricting their bodily autonomy since they would not be able to discontinue use without a health care provider; found the idea of a contraceptive method inside their body for years unsettling; and/or desired flexibility over their pregnancy plans. These results highlight a contradiction between IUD promotion discourses and some women’s views about the method and their approaches to pregnancy. Discursive and clinical practices that encourage the use of long-acting contraceptive methods like IUDs over other methods may unintentionally infringe upon reproductive autonomy.

Boundary work: understanding enactments of ‘community’ in an area-based, empowerment initiative 
Joanna Reynolds

Engaging the community in initiatives to improve health and inequalities is a prominent feature of contemporary public health approaches. Yet, how ‘community’ might be differently interpreted and experienced through mechanisms of engagement is little understood, with potential implications for how the pathways of effect of such initiatives, and their impacts on health inequalities, might be evaluated. This study sought to explore how community was enacted through the delivery of an area-based, empowerment initiative underway in disadvantaged areas of England. An ethnographic approach was used to identify enactments of community arising around the core activities and decision-making processes of the resident-led initiative in two sites. Enactments comprised ‘boundary work’: the ongoing assertion and negotiation of boundaries around who or what was, and was not, eligible to contribute to decision-making, and / or benefit from the initiative. Boundary work arose around practices of connecting with and consulting residents, protecting locally defined interests and autonomy, negotiating different sets of interests, and navigating representation. The multiple, shifting enactments of community and its boundaries highlight implications for understanding processes of inclusion and exclusion inherent to community engagement, and for interpreting pathways between collective empowerment and improved health. The study also raises questions for evaluating similar complex, community initiatives, where community cannot be taken as a fixed analytical unit, but something continually in process through the interplay between the initiative and the wider context. This must inform interpretations of how, and for whom, community engagement might – or might not – improve health.

Beyond patient culture: filtering cultural presentations of depression through structural terms
Bianca Brijnath & Josefine Antoniades

There is growing global consensus for researchers to look beyond patient culture to gain a more nuanced understanding of the ways in which wider socio-structural forces influence health outcomes. In line with these critiques, this paper examines culturally diverse patients’ views about the symptoms, aetiology, and experiences of their depression, and considers how socio-structural forces are implicated in the illness experience. Analysing the transcripts of interviews with 28 Indian-Australians and 30 Anglo-Australians with depression, our results reveal cultural differences between Indian- and Anglo-Australians regarding the chronicity, perceived severity, and aetiology of their depression. Our results also show how these cultural differences are related to socio-structural forces such as time, money, and migration. We conclude by arguing that the current medicalised approach to treating depression needs to shift to a more empathetic problem-solving one; such a change would prompt greater critical consideration of the socio-structural forces that impact people’s mental health and not just focus on individuals’ culture and pathologies.

International Journal of Social Psychiatry

Reactions to symptoms of mental disorder and help seeking in Sabah, Malaysia 
Wendy Diana Shoesmith, Awang Faisal Bin Awang Borhanuddin, Pauline Yong Pau Lin, Ahmad Faris Abdullah, Norhayati Nordin, Beena Giridharan, Dawn Forman, Sue Fyfe

Background: A better understanding is needed about how people make decisions about help seeking.

Materials: Focus group and individual interviews with patients, carers, healthcare staff, religious authorities, traditional healers and community members.

Discussion: Four stages of help seeking were identified: (1) noticing symptoms and initial labelling, (2) collective decision-making, (3) spiritual diagnoses and treatment and (4) psychiatric diagnosis and treatment.

Conclusion: Spiritual diagnoses have the advantage of being less stigmatising, giving meaning to symptoms, and were seen to offer hope of cure rather than just symptom control. Patients and carers need help to integrate different explanatory models into a meaningful whole.

The role of community pharmacists in the identification and ongoing management of women at risk for perinatal depression: A qualitative study
Sabrine Elkhodr, Maya Saba, Claire O’Reilly, Bandana Saini

Background: While pharmacists are among the most accessible primary health professionals within a mother’s healthcare team to identify potential cases of perinatal depression (PND), very little in the literature suggests that this role has been explored.

Aim: The aim of this study was to explore community pharmacists’ perspectives on their potential roles in perinatal mental health promotion (recognition and health education) and the factors affecting these roles.

Methods: In total, 20 semi-structured, in-depth interviews were conducted with community pharmacists.

Results: Most pharmacists highlighted their significant roles in recognising PND symptoms and providing medication-related support to perinatal mothers. Barriers to service provision included inter-professional role boundaries, the lack of established referral systems and service remuneration and the lack of adequate training in mental health.

Conclusion: Pharmacists could potentially reinforce their involvement in mental health promotion activities.

A review of mental health policies from Commonwealth countries
Dinesh Bhugra, Soumitra Pathare, Rajlaxmi Joshi, Gurvinder Kalra, Julio Torales, Antonio Ventriglio

Aims: One way of reducing this inequality is to ensure that mental health policies reflect this. We were interested in looking at the policies of members of Commonwealth.

Method: We decided to survey 52 member countries of the Commonwealth to explore whether mental health policies existed and whether there was equity between physical and mental health services funding. Using World Health Organization (WHO) data sets and other sources when indicated, we looked at the existence and contents of mental health policies.

Results: We found that less than half of the countries had a mental health policy. Deinstitutionalization was not seen as a priority in many countries and there was no equity between physical and mental health funding. Although integration between physical and mental health care was recommended in many countries, there was a clear gap.

Conclusion: It is apparent that there is still a long way to go in terms of equity between physical and mental health in terms of funding in member states of the Commonwealth. These findings confirm earlier observations of discrimination against people with mental illness. We suggest that there must be mechanisms in place to facilitate and support change wherever required.

Social Studies of Science

Sticky technologies: Plumpy’nut®, emergency feeding and the viscosity of humanitarian design
Tom Scott-Smith

Inspired by de Laet and Mol’s classic article on the Zimbabwean Bush Pump and Peter Redfield’s revival of fluidity as a central characteristic of humanitarian design, this paper argues that many humanitarian technologies are characterized not so much by fluidity as by stickiness. Sticky technologies lie somewhere between fluid technologies and Latourian immutable mobiles: They work precisely because they are mobile and not overly adaptable, yet they retain some flexibility by reaching out to shape and be shaped by their users. The concept is introduced through a detailed study of Plumpy’nut®, a peanut paste for therapeutic feeding that is materially sticky – much firmer than a fluid, yet still mutable – as well as conceptually sticky. ‘Stickiness’ can have wide utility for thinking through technology and humanitarianism.

‘We’ve been here for 2,000 years’: White settlers, Native American DNA and the phenomenon of indigenization (open access) 
Darryl Leroux

Relying on a populace well-educated in family history based in ancestral genealogy, a robust national genomics sector has developed in Québec over the past decade-and-a-half. The same period roughly coincides with a fourfold increase in the number of individuals and organizations in the region self-identifying with a mixed-race form of indigeneity that is counter to existing Indigenous understandings of kinship and citizenship. This paper examines how recent efforts by genetic scientists, working on a multi-year research project on the ‘diversity’ of the Québec gene pool, intervene in complex settler-Indigenous relations by redefining indigeneity according to the logics of ‘Native American DNA’. Specifically, I demonstrate how genetic scientists mobilize genes associated with Indigenous peoples in ways that support regional efforts to govern settler-Indigenous relations in favour of otherwise white settler claims to Indigenous lands.

Cultures of caring: Healthcare ‘scandals’, inquiries, and the remaking of accountabilities
Dawn Goodwin

In the UK, a series of high-profile healthcare ‘scandals’ and subsequent inquiries repeatedly point to the pivotal role culture plays in producing and sustaining healthcare failures. Inquiries are a sociotechnology of accountability that signal a shift in how personal accountabilities of healthcare professionals are being configured. In focusing on problematic organizational cultures, these inquiries acknowledge, make visible, and seek to distribute a collective responsibility for healthcare failures. In this article, I examine how the output of one particular inquiry – The Report of the Morecambe Bay Investigation – seeks to make culture visible and accountable. I question what it means to make culture accountable and show how the inquiry report enacts new and old forms of accountability: conventional forms that position actors as individuals, where actions or decisions have distinct boundaries that can be isolated from the ongoing flow of care, and transformative forms that bring into play a remote geographical location, the role of professional ideology, as well as a collective cultural responsibility.

Shifting syndromes: Sex chromosome variations and intersex classifications 
David Andrew Griffiths

The 2006 ‘Consensus statement on management of intersex disorders’ recommended moving to a new classification of intersex variations, framed in terms of ‘disorders of sex development’ or DSD. Part of the rationale for this change was to move away from associations with gender, and to increase clarity by grounding the classification system in genetics. While the medical community has largely accepted the move, some individuals from intersex activist communities have condemned it. In addition, people both inside and outside the medical community have disagreed about what should be covered by the classification system, in particular whether sex chromosome variations and the related diagnoses of Turner and Klinefelter’s syndromes should be included. This article explores initial descriptions of Turner and Klinefelter’s syndromes and their subsequent inclusion in intersex classifications, which were increasingly grounded in scientific understandings of sex chromosomes that emerged in the 1950s. The article questions the current drive to stabilize and ‘sort out’ intersex classifications through a grounding in genetics. Alternative social and historical definitions of intersex – such as those proposed by the intersex activists – have the potential to do more justice to the lived experience of those affected by such classifications and their consequences.

Social Theory and Health

Perpetuating the utopia of health behaviourism: A case study of the Canadian Men’s Health Foundation’s Don’t Change Much initiative
Rachel Kirkland, Dennis Raphael

The Canadian Men’s Health Foundation (CMHF) receives significant funding and media attention for its Don’t Change Much initiative, which claims freely chosen small behavioural changes will improve men’s health across Canada. The enthusiastic support for the CMHF’s individual lifestyle interventions that take no account of the structural drivers of men’s health and health inequalities is considered through an application of Ruth Levitas’ utopian analysis exercise. We consider the utopian visions that permeate the CMHF’s initiative and examine its culture through the lens of discursive institutionalism to identify the hegemonic values that imbue CMHF’s and other Canadian health promotion activities. We then suggest more useful directions for improving men’s health and reducing the health inequalities that pervade the Canadian scene.

A future for disability: perceptions of disabled youth and nonprofit organizations 
Christine Kelly

Drawing on the turn in feminist disability studies toward notions of time and futurity, this article presents themes from a study of disability and health-related organizations and youth engagement in Ottawa, Canada. This article asks: what types of futures are imagined by youth with disabilities? How do they resemble or differ from the future visions of disability and health-related nonprofit organizations? And further, do these futures align with disability scholarship on crip futurity? Using a grounded theory approach and qualitative methods, the study included a website analysis of 84 organizations, key informant interviews with 25 employees, and five focus groups with 46 youth with disabilities. The youth with disabilities in this study have a depoliticized sense of being ‘out of time’ with normative temporalities. The organizations largely present ‘detached futures’ that imagine positive visions of the future that they are unable to enact in light of the structural constraints on their operations. Taken together, this article emphasizes the importance of encouraging disability organizations and disabled youth to generate images of crip futures beyond accommodation in order to transform experiences of disability in the present.

Sociology of Health and Illness

Conceptualising ‘materialities of care’: making visible mundane material culture in health and social care contexts
Christina Buse, Daryl Martin, Sarah Nettleton

‘Materialities of care’ is outlined as a heuristic device for making visible the mundane and often unnoticed aspects of material culture within health and social care contexts, and exploring interrelations between materials and care in practice. Three analytic strands inherent to the concept are delineated: spatialities of care, temporalities of care and practices of care. These interconnecting themes span the articles in this special issue. The articles explore material practice across a range of clinical and non-clinical spaces, including hospitals, hospices, care homes, museums, domestic spaces, and community spaces such as shops and tenement stairwells. The collection addresses fleeting moments of care, as well as choreographed routines that order bodies and materials. Throughout there is a focus on practice, and relations between materials and care as ongoing, emergent and processual. We conclude by reflecting on methodological approaches for examining ‘materialities of care’, and offer some thoughts as to how this analytic approach might be applied to future research within the sociology of health and illness.

Materialities of mundane care and the art of holding one’s own
Julie Brownlie, Helen Spandler

The focus of this special issue is on how everyday or mundane materialities actively mediate health and care practices. This article extends this concern with the mundane to care itself and explores how specific materialities, such as shared spaces and everyday objects, not only mediate mundane care but enable it to happen. Our focus is on mundane help in the context of ill health, between people who are not immediate family, such as neighbours, acquaintances and others with whom we interact in our daily lives. Drawing on recent empirical studies of low-level support in two different parts of the UK, we show how the materialities of care can mediate the affective risks associated with receiving such help. Specifically, we investigate how materialities help people to balance the expression of their vulnerability with a need to retain their dignity, a practice referred to as ‘holding one’s own’. In doing so, we argue that materialities are not just the conduits for care – what care passes through – or things that mediate care. We suggest instead that materialities are part of how relationships of mundane care are constituted and maintained.

Thinking with care infrastructures: people, devices and the home in home blood pressure monitoring (open access)
Kate Weiner and Catherine Will

The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self-monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio-material arrangements involved in self-monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections.

The art and nature of health: a study of therapeutic practice in museums
Gemma Mangione

Drawing on ethnographic fieldwork and interviews at a major metropolitan art museum and botanic garden, this article considers the practical accomplishment of American museums’ ‘health turn’ by tracing how museum staff develop therapeutic programmes for visitors with disabilities. In doing so, it considers one of medical sociology’s fundamental theoretical questions – how ideologies of health order social life – in an unconventional empirical setting. Acknowledging contemporary arguments for both the relative merits and unintended consequences of this policy trend, I focus instead on the particular institutional arrangements, professional norms, and material cultures of art and nature that shape museums’ therapeutic work, so as to reveal its effects. Data reveals ideological similarities, but practical differences, between museological and medical understandings of wellness. Extending a ‘medical sociology of practice’ to new contexts ultimately foregrounds the contingencies, and diversity, of therapeutic mechanisms and meanings, thereby broadening sociological research on healing and healthism.

Exchanging implements: the micro-materialities of multidisciplinary work in the operating theatre 
Christian Heath, Paul Luff, Marcus Sanchez-Svensson and Maxim Nicholls

Surgical procedures rely upon an array of commonplace tools, implements and materials that mediate practice and disciplinary collaboration within the operating theatre. Substantial time is dedicated to the issue and provision of these artefacts and their timely exchange is critical to the successful accomplishment of surgical procedures. In this article, we consider the practice, knowledge and agency that informs how particular implements and materials are passed by the scrub nurse to the surgeon that in turn enables their deployment with regard to the particular procedure and the contingencies ‘at hand’. We address the technicalities of these ‘non-technical skills’ and examine how they rely upon a disciplinary vision and interactional organisation that informs both the scrutiny of action and the ways in which implements and materials are handled and exchanged. We explore the implications of our analysis for our understanding of agency in action and the growing interest in developing robots or autonomous agents to support work and collaboration in health care.

Placing care: embodying architecture in hospital clinics for immigrant and refugee patients
Susan E. Bell

This article is part of a hospital ethnography that investigates healthcare architecture as an aspect of an increasingly large, complex, and urgent global health issue: caring for refugees and other immigrants. It argues that hospitals are nodes in transnational social networks of immigrant and refugee patients that form assemblages of human and non-human objects. These assemblages co-produce place-specific hospital care in different hospital spaces. Place-specific tensions and power dynamics arise when refugees and immigrants come into contact with these biomedical spaces. The argument is developed by analysing waiting rooms and exam rooms in two outpatient clinics in one US hospital. The article draws its analysis from 9 months of fieldwork in 2012 that included following 69 adult immigrant and refugee patients and observing their encounters with interpreters and clinic staff. Its inclusion of a transnational dimension for understanding place-specific hospital care adds conceptual and empirical depth to the study of how place matters in 21st century hospitals.

Private finance initiative hospital architecture: towards a political economy of the Royal Liverpool University Hospital
Paul Jones

Sociological analysis has done much to illuminate the architectural contexts in which social life takes place. Research on care environments suggests that the built environment should not be understood as a passive backdrop to healthcare, but rather that care is conditioned by the architecture in which it happens. This article argues for the importance of going beyond the hospital walls to include the politics that underwrite the design and construction of hospital buildings. The article assesses the case of the yet-to-be-realised Liverpool Royal University Hospital, and the private finance initiative (PFI) funding that underpins the scheme, which is suggested as a salient ‘external’ context for understanding architecture’s role in the provision of healthcare of many kinds for many years to come. PFI has major implications for democratic accountability and local economy, as well as for the architecture of the hospital as a site of care. Critical studies can illuminate these paradoxically visible-but-opaque hospital spaces by going beyond that which is immediately empirically evident, so as to reveal the ways in which hospital architecture is conditioned by political and economic forces.

Dressing disrupted: negotiating care through the materiality of dress in the context of dementia 
Christina Buse and Julia Twigg

This paper explores how the materiality of dress mediates and shapes practices of care in the context of dementia. Earlier research called for an approach to conceptualising care that recognised the role played by everyday artefacts. We extend this to a consideration of dress and dressing the body in relation to people with dementia that involves the direct manipulation of material objects, as well as the materiality of bodies. The paper draws on an ESRC funded study Dementia and Dress, which examined experiences of dress for people with dementia, families and care-workers using ethnographic and qualitative methods. Our analysis explores the process of dressing the body, the physicality of guiding and manipulating bodies into clothing, dealing with fabrics and bodies which ‘act back’ and are resistant to the process of dressing. We consider how the materiality of clothing can constrain or enable practices of care, exploring tensions between garments that support ease of dressing and those that sustain identity. Examining negotiations around dress also reveals tensions between competing ‘logics’ of care (Mol 2008).

Family food practices: relationships, materiality and the everyday at the end of life 
Julie Ellis

This article draws on data from a research project that combined participant observation with in-depth interviews to explore family relationships and experiences of everyday life during life-threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the study’s broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The article also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience.

Becoming at home in residential care for older people: a material culture perspective
Melanie Lovatt

Residential homes encourage new residents to bring belongings with them, so that they can personalise their room and ‘feel at home’. Existing literature on material culture in residential homes views objects as symbols and repositories of home and identity, which can facilitate a sense of belonging in residents through their display in residents’ rooms. I suggest that this both misunderstands the processual and fluid nature of home and identity, and conceptualises objects as essentially passive. This article uses ethnographic data and theories of practice and relationality to argue that rather than the meaning of home being inherent in objects, or felt subjectively by residents, meaning is generated through ongoing, everyday interactions between the two. I show that residents became at home by acquiring new things –as well as displaying existing possessions – and also through interacting with mundane objects in everyday social and relational practices such as cleaning and hosting. I conclude that being at home in older people’s residential homes need not be so different from being at home at other stages of the life course and in other settings. This challenges conceptualisations of older people’s homes – and older age itself – as somehow unknowable and unfamiliar.

Afterword: materialities, care, ‘ordinary affects’, power and politics
Joanna Latimer

In this paper I explore how the papers in this volume offer ways of thinking about materialities of care in terms of political ecologies, including hierarchies of value as well as assemblages, in which strategic agendas are made present in everyday practices, with profound and ordinary affects, as well as effects. I show how power can work through the association of multiple and heterogeneous materials and social processes to create ‘thresholds’, as spaces through which people must pass in order to be included as patients, and which circulate specific imaginaries over what counts as an appropriate need. I go on to suggest how some material practices are made mundane and immaterial, that is inconsequential, so that by drawing attention to their importance in how care is done (or not done) the papers help disrupt the commonplace production and reproduction of the ‘neglected things’ (Puig de la Bellacasa 2012) of healthcare environments, and by so doing help reimagine what is important for occasions to actually be caring. I then shift to thinking about a sensibility, one that is highly valued in this collection of articles, that helps illuminate different imaginaries of care to those that dominate healthcare environments, an approach that I have called elsewhere ‘relational extension’, and in the example I offer here show how shifts in extension as a form of motility disrupts stabilities and their reproduction, to accomplish different forms of world-making.

Transcultural Psychiatry

“Our lifestyle is a mix-match”: Traditional healers talk about suicide and suicide prevention in South Africa
Jason Bantjes, Leslie Swartz, Sithembile Cembi

Practitioners of traditional African medicine (traditional healers) are an important part of the health care system in South Africa, yet their voices are often absent from discussions about public health. In this context, we set out to investigate how a group of traditional healers in South Africa understand suicide and suicide prevention. In-depth, semistructured interviews were conducted with 6 traditional healers and analysed using thematic content analysis. The traditional healers report they are frequently consulted by suicidal individuals and they are confident about their ability to help people in a suicidal crisis. Findings suggest that traditional healers understand suicidal behaviour as a symptom of social disconnection and cultural discontinuity. Traditional healers report that suicidal individuals can be helped by reestablishing interpersonal connections, reconnecting to family and ancestors, and renewing their cultural identities through rituals. These findings suggest that there is some congruence between the way traditional healers understand suicide and the Western scientific and biomedical literature. Our findings raise important questions about cultural approaches to suicide research which are commonly premised on dualistic thinking that constructs culture as something distinct from Western biomedicine.

Social Science & Medicine 

Racial inequalities in health: Framing future research
Margaret T. Hicken, Nicole Kravitz-Wirtz, Myles Durkee, James S. Jackson

[excerpt] This Special Issue on Racism and Health Inequalities provides a sample of innovative work and empirical evidence from Australia, Brazil, New Zealand, and the United States. The 23 papers in this collection encompass qualitative and quantitative methods and multiple scientific disciplines. Furthermore, they collectively underscore the potential for innovative public health research on cultural and structural racism, but also highlight a number of challenges to confront as we continue to advance scientific knowledge within this area. […] We will begin with a discussion on cultural and structural racism, including our working definitions and the processes through which they are related. We will then discuss our two recommendations for future research on racial health inequalities, using arguments from papers in this collection to support them. We will conclude with a call to action for the future of racial health inequalities research that challenges scholars to move toward a “reconstruction of knowledge” (Desmond and Emirbayer, 2010) about the root causes of these inequalities to then work toward their elimination.

Racialized legal status as a social determinant of health 
Asad L. Asad, Matthew Clair

This article advances the concept of racialized legal status (RLS) as an overlooked dimension of social stratification with implications for racial/ethnic health disparities. We define RLS as a social position based on an ostensibly race-neutral legal classification that disproportionately impacts racial/ethnic minorities. To illustrate the implications of RLS for health and health disparities in the United States, we spotlight existing research on two cases: criminal status and immigration status. We offer a conceptual framework that outlines how RLS shapes disparities through (1) primary effects on those who hold a legal status and (2) spillover effects on racial/ethnic in-group members, regardless of these individuals’ own legal status. Primary effects of RLS operate by marking an individual for material and symbolic exclusion. Spillover effects result from the vicarious experiences of those with social proximity to marked individuals, as well as the discredited meanings that RLS constructs around racial/ethnic group members. We conclude by suggesting multiple avenues for future research that considers RLS as a mechanism of social inequality with fundamental effects on health.

A safe haven for the injured? Urban trauma care at the intersection of healthcare, law enforcement, and race 
Sara F. Jacoby, Therese S. Richmond, Daniel N. Holena, Elinore J. Kaufman

Patients with traumatic injuries often interact with police before and during hospitalization, particularly when their injuries are due to violence. People of color are at highest risk for violent injuries and have the poorest outcomes after injury. The purpose of this study was to describe how injured, Black patients perceived their interactions with police and what these perceptions reveal about police involvement within trauma care systems. We combined data from two qualitative studies to achieve this aim. The first was ethnographic fieldwork that followed Black trauma patients in the hospital through the physical and emotional aftermath of their injuries. The second was a qualitative, descriptive study of how patients experienced trauma resuscitation in the emergency department (ED). Both studies were conducted between 2012 and 2015 at the Trauma Center at Penn, an academic medical center in Philadelphia, Pennsylvania, United States. The present study includes data from 24 adult, Black participants undergoing treatment for injury. We reanalyzed all interview data related to law enforcement encounters from the scene of injury through inpatient hospitalization and coded data using a constant comparative technique from grounded theory. Participants described law enforcement encounters at the scene of injury and during transport to the hospital, in the ED, and over the course of inpatient care. Injured participants valued police officers’ involvement when they perceived that officers provided safety at the scene, speed of transport to the hospital, or support and information after injury. Injured participants also found police questioning to be stressful and, at times, disrespectful or conflicting with clinical care. Communities, trauma centers, and professional societies have the opportunity to enact policies that standardize law enforcement access in trauma centers and balance patients’ health, privacy, and legal rights with public safety needs.

Biocultural citizenship and embodying exceptionalism: Biopolitics for sickle cell disease in Brazil 
Melissa S. Creary

In 2006, the committee that developed the National Health Policy for the Black Population (NHPBP) chose sickle cell disease as their “flag to demand health rights.” The drafting of this policy was official recognition from the Ministry of Health for racial differences of its citizens in order to address certain inequalities in the form of racial health reparations. Through an ethnographic study which consisted of participant observation, life-story and semi-structured interviews, and surveys in the urban centers of Rio de Janeiro, São Paulo, Salvador, Belo Horizonte, and Brasília between November 2013 and November 2014, I introduce a new conceptual approach called biocultural citizenship. It is a flexible mode of enacting belonging that varies depending on disease status, skin color, social class, recognition of African lineage, and other identifiers. Using empirical evidence, this article explores how people living with sickle cell disease (SCD), civil society, and the Brazilian government—at state and federal levels—have contributed to the discourse on SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, I demonstrate that the SCD movement strategically uses Blackness to make claims for health rights. Biocultural citizenship is dependent on the idea of biological and cultural difference that is coproduced by the State and Afro-Brazilian citizens. The use of biology to help legitimate cultural claims, especially in the Black Atlantic, contributes a new and distinct way to think about how race and skin color are used as tools of agency for diasporic communities.

Exploring how prison-based drug rehabilitation programming shapes racial disparities in substance use disorder recovery
Erin M. Kerrison

Prison-based therapeutic community (TC) programming is derived from the perspective that drug addiction is primarily symptomatic of cognitive dysfunction, poor emotional management, and underdeveloped self-reliance skills, and can be addressed in a collaborative space where a strong ideological commitment to moral reform and personal responsibility is required of its members. In this space, evidence of rehabilitation is largely centered on the client’s relationship to language and the public adoption of a “broken self” narrative. Failure to master these linguistic performances can result in the denial of material and symbolic resources, thus participants learn how to use TC language to present themselves in ways that support existing institutionalized hierarchies, even if that surrender spells their self-denigration. This research examines the interview narratives of 300 former prisoners who participated in a minimum of 12 months of prison-based TC programming, and described how programming rhetoric impacted their substance abuse treatment experiences. While many of the respondents described distressing experiences as TC participants, White respondents were more likely to eventually embrace the “addict” label and speak of privileges and reintegrative support subsequently received. Black respondents were more likely to defy the treatment rhetoric, and either fail to complete the program or simulate a deficit-based self-narrative without investing in the content of those stories. The following explores the significance of language and identity construction in these carceral spaces, and how treatment providers as well as agency agendas are implicated in the reproduction of racial disparities in substance abuse recovery.

The effects of whiteness on the health of whites in the USA
Jennifer Malat, Sarah Mayorga-Gallo, David R. Williams

Whites in the USA are the dominant racial group, with greater than average access to most material and social rewards. Yet, while whites have better outcomes than other racial groups on some health indicators, whites paradoxically compare poorly on other measures. Further, whites in the USA also rank poorly in international health comparisons. In this paper, we present a framework that combines the concept of whiteness—a system that socially, economically, and ideologically benefits European descendants and disadvantages people in other groups—with research from a variety of fields in order to comprehensively model the social factors that influence whites’ health. The framework we present describes how whiteness and capitalism in the USA shape societal conditions, individual social characteristics and experiences, and psychosocial responses to circumstances to influence health outcomes. We detail specific examples of how social policies supported by whiteness, the narratives of whiteness, and the privileges of whiteness may positively and negatively affect whites’ health. In doing so, we suggest several areas for future research that can expand our understanding of how social factors affect health and can contribute to the patterns and paradoxes of whites’ health. By expanding research to include theoretically-grounded analyses of the dominant group’s health, we can achieve a more complete picture of how systems of racial inequity affect health.

Using a structural competency framework to teach structural racism in pre-health education (open access)
Jonathan M. Metzl, JuLeigh Petty, Oluwatunmise V. Olowojoba

The inclusion of structural competency training in pre-health undergraduate programs may offer significant benefits to future healthcare professionals. This paper presents the results of a comparative study of an interdisciplinary pre-health curriculum based in structural competency with a traditional premedical curriculum. The authors describe the interdisciplinary pre-health curriculum, titled Medicine, Health, and Society (MHS) at Vanderbilt University. The authors then use a new survey tool, the Structural Foundations of Health Survey, to evaluate structural skills and sensibilities. The analysis compares MHS majors (n = 185) with premed science majors (n = 63) and first-semester freshmen (n = 91), with particular attention to understanding how structural factors shape health. Research was conducted from August 2015 to December 2016. Results suggest that MHS majors identified and analyzed relationships between structural factors and health outcomes at higher rates and in deeper ways than did premed science majors and freshmen, and also demonstrated higher understanding of structural and implicit racism and health disparities. The skills that MHS students exhibited represent proficiencies increasingly stressed by the MCAT, the AAMC, and other educational bodies that emphasize how contextual factors shape expressions of health and illness.

Imagined futures in living with multiple conditions: Positivity, relationality and hopelessness 
Lindsay-Ann Coyle, Sarah Atkinson

Hope serves as an overarching concept for a range of engagements that demonstrate the benefits of a positive outlook for coping with chronic conditions of ill-health and disability. A dominant engagement through medicine has positioned hope as a desirable attribute and its opposite, hopelessness, as pathological. In this engagement hope is individual, internally located and largely cognitive and able to be learned. Attaining hope reflects a process of coming to terms with the losses associated with long-term conditions and of imagining new meanings and purposes for the future ahead. This process is characterised by a set of linear temporal stages, from loss and denial to acceptance and reappraising the life-course, by an emphasis on the morally desirable exercise of self-care and by a desired outcome that, in the absence of cure, is hope. Through interviews, we aim to unsettle the privileged status given to a positive outlook through examining the expressions, contexts and negotiations of hopelessness of people living with multiple conditions of ill-health and/or disability. These narratives of hopelessness disclose the ways in which realistic imagined possibilities for the future are constrained by external structures of time and function that demand complex negotiations with places, bodies and other people. As a situated and relational narrative, hopelessness draws our attention to the need to rebalance the exclusive attention to individual, internal resources with a renewed attention to contexts and settings. Moreover, hopelessness can be generative for those living with multiple conditions in shaping alternatively framed priorities with respect to their temporal and interpersonal relations.

Book Forum––Fernando Vidal and Francisco Ortega’s Being Brains: Making the Cerebral Subject by Todd Meyers

21 février 2018 - 6:10pm

 

Fernando Vidal and Francisco Ortega’s Being Brains: Making the Cerebral Subject is a fine-grained account of the “neuro-” in a range of disciplines, and, importantly––crucially––, takes stock of the history and scope of this prefix.  But more than this the book is an exploration, a critical engagement with the surge of brain-centered approaches to behavior, to physiology, to mind, to subjectivity, to art and creative enterprises and products––Being Brains is an invaluable appraisal of where those waves (many waves, different waves) crash and what they at times wash away.   Vidal and Ortega ask (simply, provocatively), “How did the idea that humans are essentially their brains become thinkable?” (1)

The commentaries that follow offer broad and diverse readings of the book.  We hope you enjoy.

Genealogy of the Cerebral Subject
Elizabeth Lunbeck
Harvard University

All of the Other Brains
Chloe Silverman
Drexel University

Historicizing the Brain
Martyn Pickersgill
University of Edinburgh

Knowledge about the Brain and Societal Interests
Frank W. Stahnisch
University of Calgary

A Reply:
The Neuro: Modernity, Community, and Critique
Fernando Vidal and Francisco Ortega

 

 

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