Naoki Higashida’s The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Whitney Laemmli
Translated by K.A. Yoshida and David Mitchell; Introduction by David Mitchell
Random House, 2013. 176 pages.
Naoki Higashida wants you to understand why he loves asking the same questions over and over: “Repeating these is great fun. It’s like a game of catch with a ball. Unlike the words we’re ordered to say, repeating questions we already know the answers to can be a pleasure—it’s playing with sound and rhythm.” He wants you to appreciate why he sometimes has trouble expressing himself: “it’s because the words coming out of my mouth are the only ones I can access at the time. These words are either available because I’m always using them or because they left a lasting impression on me at some point in the past.” And wants you to know the reason he jumps: “When I’m jumping, it’s as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I’m jumping, I can feel my body parts really well, too—my bounding legs and my clapping hands—and that makes me feel so, so good.”
Higashida is a Japanese teenager with autism, and his book, The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, has recently captivated the attention of both academic and popular audiences. Published in 2007 in Japan, it was translated into English in 2013. Since, The Reason I Jump has become A New York Times bestseller, been featured on The Daily Show, and named among the best books of the year by, among others, NPR and The Wall Street Journal. At the time of its writing, Higashida was almost entirely nonverbal; he composed the text by spelling out words with the aid of a printed table of forty basic Japanese characters.
This intensive labor alone makes the text a remarkable achievement, but The Reason I Jump is more than just an object of curiosity. The majority of the book consists of very short chapters conceived as responses to questions like “Why do people with autism talk so loudly and weirdly?,” “Do you prefer to be on your own?,” and “When you look at something, what do you see first?” In bright and unselfconscious prose, Higashida answers, explaining, for example, that some autistic people flap their fingers in front of their faces because “light that reaches us like this feels soft and gentle, like moonlight. But ‘unfiltered’ direct light sort of ‘needles’ its way into the eyeballs of people with autism in sharp straight lines, so we see too many points of light. This actually makes our eyes hurt.” In other chapters, Higashida notes that—contrary to popular belief—he does not really like to be alone, that visual schedules provoke intense anxiety, and that “whenever anyone treats me as if I’m still a toddler, it really hacks me off.” Interspersed with these explanatory chapters are short stories and illustrations, the former by Higashida, the latter by artists Kai and Sunny.
Higashida’s memoir is not the only first-person account of the life of an autistic individual. Temple Grandin, the livestock expert and professor of animal science at Colorado State University, is perhaps the condition’s most famous spokesperson and has lectured and written prolifically about her experiences. Other relatively well known texts include John Elder Robinson’s Asperger’s memoir Look Me in the Eye, and less heralded works also abound: Daniel Tammet’s Born on a Blue Day, Ido Kedar’s Ido in Autism Land, Judy and Sean Barron’s There’s a Boy in Here, and Arthur and Carly Fleischmann’s Carly’s Voice, to name just a few. The Reason I Jump, however, is unique because of its author’s age, its straightforward approach, and the unusual attention it has garnered.
Higashida has a clear and compelling voice, and the book itself is beautifully produced. Striking black-and-white images of birds, leaves, and plants run throughout the text and adorn its cover. In a brief afterword, illustrators Kai and Sunny write that they were inspired by Higashida’s discussion of his exceptionally intimate relationship with nature. The two have received numerous design awards and have collaborated with such luminaries as Alexander McQueen; the aesthetic sensibility they bring to the physical form of The Reason I Jump has likely helped attract readers from beyond the usual audiences for works about disability.
It is also undeniable that—at least in the United States and Britain—the Reason I Jump owes some of its popularity to its introduction, penned by renowned British novelist David Mitchell. Best known for his 2004 novel, Cloud Atlas, Mitchell is the author of six books in total, including Black Swan Green and, most recently, The Bone Clocks. He is also the parent of an autistic son. In his introduction, Mitchell describes his own reaction to reading Higashida’s book in Japanese, recalling that “it felt, as if for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words.” Along with his wife, KA Yoshida, Mitchell translated the text for the English-speaking market, eager to help demonstrate that “locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s.” None of this is to suggest that Higashida’s text is unworthy of the attention it has received, but rather to think through the conditions that allowed it to make inroads with an unusually broad readership. Works on disability often suffer from a lack investment from publishers, who tend to assume they have a dependable but narrow audience in the parents, families, and teachers of disabled individuals. Mitchell’s involvement brings cultural cachet, signaling that the subject might—and, in fact, does—merit broader interest.
Still, it is also important to remember that The Reason I Jump is not an academic text. Those hoping to find a thirteen year-old engaging in an explicit discussion of society’s rampant ableism or the social construction of disability will be disappointed. Scholars will also almost certainly take issue with Higashida’s occasional tendency to overgeneralize and his suggestions that autism represents a kind of atavism, that “we are a different kind of human, born with primeval senses,” redolent as it is with eugenic overtones. Still, as Mitchell reminds us in the introduction, “the author is not a guru,” he’s a kid, and Higashida’s most significant academic contribution may be the very act of writing itself.
The burgeoning field of disability studies has made one of its aims the representation of more diverse somatic, intellectual, and emotional experiences. Disabled voices of all sorts, scholars argue, have been too long absent from the critical discourse, stymieing deep discussion of disabled concerns and supporting the maintenance of misconceptions, structural barriers, and outright discrimination. As a result of both activist and scholarly efforts, however, change has begun to occur. Particularly in the past fifteen years, academic audiences have witnessed a profusion of historical and theoretical texts on disability, a substantial percentage of which have been authored by disabled individuals. Conferences within disability studies have also made concerted efforts to make themselves accessible to those with varied needs, offering ASL interpreters, rest and wellness rooms, and detailed guidelines that urge presenters to include textual and audio descriptions of all visual materials, use jargon-free language, provide large-print textual versions of spoken papers, and refrain from the use of scented products. Some conferences also feature presentations that do not hew to the standard academic format, incorporating theater, dance, documentary film, and other multi-sensory artistic products.
The Reason I Jump is yet another step in the direction of increased representation. Even though, in Mitchell’s words, writing for Higashida is “as taxing as, say, the act of carrying water in cupped palms across a bustling Times Square or Piccadilly Circus would be to you or me,” with the appropriate support, Higashida has managed to create an important, textured testament to his experience of the world. On the other hand, The Reason I Jump also suggests that we may have to go beyond conventional forms of textual representation to convey the full spectrum of human experience. Higashida’s explanatory prose is enlightening, but the The Reason I Jump would be colossally impoverished without the accompanying images and short stories—forms that, while perhaps less immediately legible to some readers, may more directly express Higashida’s world.
The book also—albeit implicitly—participates in scholarly efforts to demonstrate how the study of disability might shed light on embodied experience more broadly. Disability theorist Tobin Siebers, for example, has argued that because the material and social world is constructed around “normal” bodies, it is often difficult for non-disabled individuals to step back and examine the system. Disability, he argues, forces one to stand outside this framework, and thus disabled bodies make embodiment visible—and therefore ripe for analysis—in new ways. In essence, one of the reasons Higashida may be so successful in writing about his particular way of being in the world is that he is constantly made aware of how it differs from the majority of those who surround him.
Indeed, at its best, The Reason I Jump makes the reader consider his or her own body in new ways. When he writes about his seemingly erratic movements, Higashida explains that “both staying still and moving when we’re told to is tricky — it’s as if we’re remote-controlling a faulty robot…You can’t always tell just by looking at people with autism, but we never really feel that our bodies are our own…Stuck inside them, we’re struggling so hard to make them do what we tell them.” Elsewhere, he recalls the terrifying physical sensation of flashback memories and the comforting gravitational pull produced by a walk outside. Readers of these passages are made acutely aware of their own bodies, whether realizing the relative ease with which they have moved through the world or finding echoes of their own experience in Higashida’s.
As this small example illustrates, a move toward inclusive forms of conversation and representation will not only give disabled individuals their due, but also allow them to enhance and complicate other disciplines, theories, and realms of practice. It is already well known that Temple Grandin’s unique modes of sensory processing aided her in the design of innovative, humane equipment for the livestock industry. Even David Mitchell has spoken about the ways in which his boyhood stutter shaped the writer he became. “It’s true,” he remarked in a 2010 Paris Review interview, “that stammerers can become more adept at sentence construction. Synonyms aren’t always neatly interchangeable. Sometimes choosing word B over word A requires you to construct a different sentence to house it—and quickly, too, before your listener smells the stammering rat.” As disability scholar Susan Wendell puts it, “Like living with cerebral palsy or blindness, living with pain, fatigue, nausea, unpredictable abilities, and/or the imminent threat of death creates different ways of being that give valuable perspectives on life and the world. Thus, although most of us want to avoid suffering if possible, suffering is part of some valuable ways of being.” Through Higashida’s eyes, beauty, memory, nature, and the passage of time all look suddenly, strikingly different, a contribution he makes both despite and because of his clearly evident struggles.
Jason Taylor, the protagonist of Mitchell’s 2006 novel Black Swan Green, is also a stammerer and also—like Naoki Higashida—a thirteen-year-old boy trying to make his way through the morass of adolesence. Though mocked at school and miserable at home, Jason finds comfort and control in writing poetry, which he submits to the local parish newsletter. Always, but perhaps especially at thirteen, writing is a way of crafting the self, and The Reason I Jump reminds us that this outlet and others—art, music, even academic conference papers—should be accessible to individuals with varied abilities, needs, and gifts. These stories, though, need to be heard as much as they need to be written, and readers of The Reason I Jump will undoubtedly come away with a newly complicated sense of Higashida’s world, a fuller appreciation of the power of writing, and a more capacious understanding of the human experience.
Whitney Laemmli is a PhD candidate in the Department of History and Sociology of Science at the University of Pennsylvania. She is currently completing her dissertation, “The Choreography of Everyday Life: Rudolf Laban and the Analysis of Modern Movement,” which explores how a tool for inscribing dance on paper developed in Weimar Germany found new life in the psychiatric hospitals, anthropological practice, and corporate boardrooms of mid-century America.
Baynton, Douglas. “Disability and the Justification of Inequality in American History,” in The New Disability History: American Perspectives, ed. Paul K. Longmore and Lauri Umansky. New York: NYU Press, 2001.
Cooter, Roger. “The Disabled Body,” in Companion to Medicine in the Twentieth Century, edited by Roger Cooter and John Pickstone. London: Routledge, 2000.
Grandin, Temple. Thinking in Pictures. New York: Vintage, 2006.
Kudlick, Catherine J. “Disability History: Why We Need Another Other,” The American Historical Review 108 (June 2003): 763-93
Mitchell, David. “The Art of Fiction.” Interview in The Paris Review 193 (2010).
Mitchell, David. Black Swan Green. New York: Random House, 2007.
Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2006.
Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities,” Hypatia 16 (2001): 17-33.
Wendell, Susan. “Who is Disabled? Defining Disability,” in The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.
 Nevertheless, Higashida does express social constructionist ideas in a more casual way, noting that he sees his autism not as an inherent problem, but as a mismatch between his particular brain architecture and the world in which he lives. For an introduction to some of the key issues in disability studies, see: Susan Wendell, “Who is Disabled? Defining Disability,” in The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996); Douglas Baynton, “Disability and the Justification of Inequality in American History,” in The New Disability History: American Perspectives, ed. Paul K. Longmore and Lauri Umansky (New York: NYU Press, 2001); Catherine Kudlick, “Disability History: Why We Need Another Other,” The American Historical Review 108 (June 2003): 763-93; Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008); Roger Cooter, “The Disabled Body,” in Companion to Medicine in the Twentieth Century, ed. Roger Cooter and John Pickstone (London: Routledge, 2000).
 Wendell, “Unhealthy Disabled,” 31.
A great deal has happened since the first Web Roundup on Ebola. The epidemic has spread both in West Africa and globally, and material about Ebola has spread throughout the web. According to the CDC, as of October 22, a total of 9911 cases of Ebola have been reported, primarily in Liberia, Guinea, and Sierra Leone (map of new cases), and there have been an estimated 4546 deaths. WHO has declared an end to the outbreak in Nigeria and Senegal, but there are now cases in Europe and North America. In Spain and the United States, there have been local cases of viral transmission within healthcare facilities.
It is no surprise that anthropologists are actively involved in the discussion, including this ongoing Somatosphere Series Ebola Fieldnotes. The AAA hosted a Virtual Event highlighting anthropological information and intervention. Cultural Anthropology “Hot Spots” online now includes an extensive collection of posts on Ebola, linking political, social, and viral landscapes. This series includes some key pieces for the ongoing negotiation of how to understand the social and cultural dimensions that are relevant to the spread of Ebola without pathologizing West Africa and its local cultural practices: the rhetorics and realities of “bush meat”; funerary practices and the handing of bodies; suffering and the language of witchcraft.
Adia Benton, in addition to her contributions here and to the resources mentioned above, has written many relevant commentaries, including those on her website Ethnographic Emergency and in Dissent (“The Not-So-Secret Serum”). In the London Review of Books: “Diary”, Paul Farmer asserts that “An Ebola diagnosis need not be a death sentence.” He blames weak health systems for the current situation, and he argues that border closures not only prevent resources from reaching those in need, but that they also lead to stigma, increased fear, and violence. Farmer also touches upon the question of “‘cultural beliefs and behaviours’ said to propagate the outbreak,” suggesting that this line of inquiry is a distraction (and perhaps a legacy of anthropologists’ indefatigable “obsession with funerary rituals – the more lurid the better”?).
There are also notable selections within broader discussions about political economy, media coverage, inequality, and environmental linkages. Both the article “One Powerful Illustration Shows Exactly What’s Wrong With How the West Talks About Ebola” and the image to which it refers reference the stark disparities in media coverage of cases in the US and Europe versus West Africa. The New Yorker article “Ebolanomics” outlines the global economic underpinnings of pharmaceutical research and development. Biologist Rob Wallace (Farming Pathogens) discusses potential links between Ebola, the environment, Palm Oil agribusiness, and shifts in human-animal relationships (also “Neoliberal Ebola: The agroeconomics of a deadly spillover”). Similar parallels are drawn between the virus, politics, economics, and ecology in the PLOS NTDs editorial, “Outbreak of Ebola Virus Disease in Guinea: Where Ecology Meets Economy.”
The social dynamics of transmission have become the topic of multiple critiques. In West Africa, because family and community caregivers are disproportionately female, those infected are also disproportionately female. Slate describes this dynamic as “The Most Terrifying Thing About Ebola”: “This virus preys on care and love.” Health care workers are also frequently infected in multiple contexts, and gendered aspects of caregiving extend beyond Africa. In Spain and in the US, those locally infected have been nurses and female. Labor relations, power, and risk mark a related issue: a “whistleblower” nurse from Dallas described “chaos” and a pileup of infected waste in hallways. Earlier this month, LaGuardia Airport cabin cleaners walked off the job citing unsafe conditions and lack of training and equipment to safely clean bodily fluids.
Journalists have also found themselves in situations of risk, prompting comparisons to covering war. An infected NBC cameraman has recently been released from the hospital, and physician-correspondent Nancy Snyderman has apparently been told to “take some time off” after breaking voluntary quarantine to visit a soup restaurant in New Jersey. (Following the uproar, she was subsequently placed under mandatory quarantine, and she has now been cleared.)
Fear, Panic, Anti-Panic
Dynamics and questions of fear and mistrust permeate discussions surrounding the Ebola outbreak in West Africa. In “Ebola in a Stew of Fear” (NEJM), Gregg Mitman catalogs the “ecology of fear” surrounding the virus in Liberia, including echoes of past outbreaks, American medical research expeditions, civil war, and resource depletion at the hands of multinational corporations. In “Dispatch From Liberia: An Epidemic of Fear,” Adam C. Levine recounts his work treating patients while encased in layers of protective clothing; because Ebola so frequently infects health care workers, “the very people who calmed our fears in the past, who talked us through other epidemics and assured us that everything was going to be okay if we only kept calm and did A, B, and C, are now running scared themselves.” The remedy is the rejection of fear itself: “There is a dire need for the international community to stop treating this crisis like a horror movie, closing its eyes tightly until the scary part is over, and start treating it like a real humanitarian disaster that requires an adequate input of monetary, logistical, and yes, human resources.” Rumor and folklore are also described in epidemic terms, and Ebola perches high atop the “dread factor.”
It is therefore not a surprise that both panic and discourses of panic arrived in the United States even in advance of its first Ebola case. In August, the MIT Knight Science Journalism tracker had already noticed that “Media give mixed messages on ‘out of control’ Ebola outbreak.” The CDC has focused on the management of perceptions and panic control, with multiple reiterations, and local governments, doctors, and some media outlets have followed suit (Wired, Slate). On the “Colbert Report,” Kent Sepkowitz, head of Memorial Sloan Ketterings’s infection control program, placed Stephen Colbert’s odds of getting Ebola at “zero.” Even for the rich and famous, zero chance is a difficult level of certainty to reach; in 2008, scientists even conceded that there was some risk of the Large Hadron Collider destroying the world, though it was considered extremely unlikely.
Next, add analyses of the (dangerous) media overreaction to a mythical public overreaction (because “twice as many Americans believe in witches as are afraid of Ebola“) and more parodies of media overreaction (for example, on The Daily Show), and we have the makings of a stew of our own. More recently, the CDC has appeared to realize that too much placation can lead to under-reaction, and the big picture has been tempered: “Frieden warned Thursday that without immediate, concerted, bold action, the Ebola virus could become a global calamity on the scale of HIV.” The CDC needs resources for public health and infection control, and public sentiment (and perhaps some level of fear) is not a trivial ingredient in acquiring these resources.
The imagery that accompanies discussions of Ebola calls to mind a 1996 article by Arthur and Joan Kleinman, which addressed the complexities of photojournalism, public health, and professional appropriations of the images of suffering. Recent New York Times images include a video of a young man “Dying of Ebola at the Hospital Door” and “a 4-year-old girl lay on the floor in urine, motionless, bleeding from her mouth, her eyes open.” Referring to the latter image, a featured comment from “Hannah” reads: “To see a four year old [little] girl on the floor of a what is called a “hospital”, alone, scared, bleeding and dying in the remnants of other patient’s fluids, is so [unacceptable], inhumane and shocking, that I can hardly stand to [contemplate] it.” But then the comment goes on to call for the United States to provide resources for health care in West Africa, showing the complex ties between disturbing media imagery, global attention, political will, and resource allocation. In comparison, coverage of children who have died of Enterovirus in the United States tends to include more pictures of the children taken before they became ill than of sick children in hospital settings (For example: New York Times, CNN). Of course, there may not be any truly appropriate ways to select imagery to go along with globally distributed stories telling of local death and suffering, (and it is also with ambivalence that I have linked these images here).
- “Ebola and the Epidemics of the Past” (WSJ) and “Visualised: how Ebola compares to other infectious diseases” (The Guardian)
- “Ebola’s Chain of Infection” (Contagions)
- Ebolavirus topics on the Virology Blog by Vincent Racaniello and Ebloa topics at the Lancet
- Commentary from Peter Piot, the co-discoverer of the virus, on NPR and Spiegel online.
- Longer video documentaries and news reports: “Saving Dr. Brantly” (NBC News) and “Ebola Outbreak” (PBS Frontline)
Kleinman, Arthur, and Joan Kleinman. 1996. “The appeal of experience; the dismay of images: Cultural appropriations of suffering in our times.” Daedalus 125(1):1-23.
Globalising Mental Health or Pathologising the Global South? Mapping the Ethics, Theory and Practice of Global Mental Health — A special issue of Disability and the Global South by Aaron Seaman
The open access journal, Disability and the Global South, currently has a special issue, “Globalising Mental Health or Pathologising the Global South? Mapping the Ethics, Theory and Practice of Global Mental Health“. The issue is edited by China Mills and Suman Fernando, who offer an introduction and editorial to the issue, which is followed by nine articles and several short “Voices from the Field” pieces. (All pieces can be accessed from the link above.)
Globalising Mental Health or Pathologising the Global South? Mapping the Ethics, Theory and Practice of Global Mental Health
China Mills and Suman Fernando
How ‘evidence-based’ is the Movement for Global Mental Health?
A central claim in publicity for the Movement for Global Mental Health is that the movement is both ‘rights-based’ and ‘evidence-based’. In this article we focus on the second claim, critically examining the evidence on which the movement’s programme is based. The concepts and methodology of the movement are those of mainstream Western psychiatry, so we first review briefly the inadequacies and inconsistencies of this framework, in particular the problems of identifying, measuring, explaining and treating ‘mental illnesses’. We conclude that the scientific knowledge base of contemporary psychiatry has been gravely distorted by its dependence on financing from the pharmaceutical industry, which has led to exaggerated attention on biomedical theories and treatments with a corresponding neglect of social factors and prevention. Second, we examine the problems of transferring this framework to low and middle-income countries. Adopting a biomedical view enables the movement to evade awkward questions regarding the cultural embeddedness of the issues it deals with and their relation to social, economic and political conditions in these countries. Confident claims are made by the movement about the nature and prevalence of ‘mental illnesses’ across the world, the burden they represent, and the benefits to be expected from tackling them by ‘scaling-up’ mental health services based on Western knowledge. However, cross-cultural psychiatric epidemiology is not sufficiently developed to be able to support any of these claims and the considerable quantities of data that are produced as ‘evidence’ turn out to be largely based on guesswork. The article concludes that Western psychiatry can certainly provide low- and middle income countries with instructive examples – but they are mainly examples of what not to do.
Reciprocity in Global Mental Health Policy
Ross White and Sashi Sashidharan
In an attempt to address inequalities and inequities in mental health provision in low and middle-income countries the WHO commenced the Mental Health Gap Action Programme (mhGAP) in 2008. Four years on from the commencement of this programme of work, the WHO has recently adopted the Comprehensive Mental Health Action Plan 2013-2020. This article will critically appraise the strategic direction that the WHO has adopted to address mental health difficulties across the globe. This will include a consideration of the role that the biomedical model of mental health difficulties has had on global strategy. Concerns will be raised that an over-reliance on scaling up medical resources has led to a strengthening of psychiatric hospital-based care, and insufficient emphasis being placed on social and cultural determinants of human distress. We also argue that consensus scientific opinion garnered from consortia of psychiatric ‘experts’ drawn mainly from Europe and North America may not have universal relevance or applicability, and may have served to silence and subjugate local experience and expertise across the globe. In light of the criticisms that have been made of the research that has been conducted into understanding mental health problems in the global south, the article also explores ways in which the evidence-base can be made more relevant and more valid. An important issue that will be highlighted is the apparent lack of reciprocity that exists in the impetus for change in how mental health problems are understood and addressed in low and middle-income countries compared to high-income countries. Whereas there is much focus on the need for change in low and middle-income countries, there is comparatively little critical reflection on practices in high-income countries in the global mental health discourse. We advocate for the development of mental health services that are sensitive to the socio-cultural context in which the services are applied. Despite the appeal of global strategies to promote mental health, it may be that very local solutions are required. The article concludes with some reflections on the strategic objectives identified in the Comprehensive Mental Health Action Plan 2013-2020 and how this work can be progressed in the future.
Culture, Politics and Global Mental Health
This paper critically examines some of the assumptions and politics which underlie the global mental health (GMH) movement; and explores the issue of cultural awareness within western psychiatric thinking and practice. The way distress is labelled has a range of consequences for the individual, their family and society, as well as those who may control or negotiate the descriptors used, the actions taken as a result of these and the resources subsequently allocated. This paper will examine if these are the most useful principles, and if so, who might be the main beneficiaries of these. The importance of context, international, national and health politics, in addition to wealth and power differentials cannot be ignored in the way that the global mental health debate is constructed. Diagnostic classification systems, such as the Diagnostic Statistical Manual (DSM) and the International Statistical Classification of Diseases and Related Health Problems (ICD), are not neutral documents as is frequently assumed but carry a range of assumptions and represent a number of interest groups. Different cultural constructions, explanatory health beliefs, idioms and local ways of dealing with distress often appear to be seen as additional layers of meaning within the current debate, rather than as the central organising concepts they are for many people. Yet the transfer of western psychiatric ideas and the uncritical generalisation of them around the world (even if made with the best of intentions) can undermine the rich traditions and cultural heritage of many low- and middle-income countries (LMICs) and could be viewed as a form of neo-colonialism. There are many angles to this debate, including the use of language and the fact that some cultures have concepts and long traditions around ‘mental health’ which are different from those used in ‘the west’. The paper will use the diagnostic category Post Traumatic Stress Disorder (PTSD) as an example to illustrate many of the points made.
Globalizing psychiatry and the case of ‘vanishing’ alternatives in a neo-colonial state
Analysing ‘modernity’ in India is a complex exercise, as the movement of the ‘modern’ is locally determined and may be non-linear at different sites and contexts. General medicine and psychiatry are illustrative of the difference in how ‘patienthood’ has been historically constructed, with each wave of ‘modernisation’ changing the subjecthood of the ‘mentally ill’. Unlike the public health sector in India, the mental health sector is driven by the ‘mental asylum’ archetype, continuing through late colonial times into contemporary science in refurbished designs. A related set of changes also concomitantly happened in the domain of indigenous healing, with each epistemic shift pushing this domain to the margins of knowledge and healing practice. The paper is set against the time period covering 1850s until recently (2014).
Faith Healing in India: The Cultural Quotient of the Critical
Sabah Siddiqui, Kimberly Lacroix, and Anup Dhar
We have had two ‘cultures of critique’. One is where critique of a culture’s own principles is generated internally. The other is when critique is mounted from the outside. This paper is an attempt to shore up the two-fold nature of both culture of critique and critique of culture through a close examination of an extant and entrenched cultural practice provisionally called ‘faith healing’ in its interlocution with western mental health models that are incumbent upon the Indian setting. This paper will explore what critical theory may need to consider in the context of India. Would it need a cultural turn, a culturalising? What is meant by culturalising? Would ‘culturalising’, in turn, be premised on a bidirectional or dual critique, that is, a critique of both the West’s hegemonic principles as well as principles that hegemonize the East, emanating from either the West or from the East? What relation would critique set up with an existing culture and cultural practice? What relation would culture set up with an existing culture of critique? In the process, this paper is also an attempt to inaugurate and locate the beginning coordinates of a critique of critique through the turn to culture in conditions called ‘faith healing’. The paper is also about the tense and troubled dialogue between the current globalization of certain frameworks in mental health, and local (faith-based) practices of health and healing that have survived in India; survived even in mutation and transformation, through colonialism, civilizing mission, welfarism and developmentalism. How would the knowledge and practice of mental health take shape in India – a landscape crisscrossed by on the one hand, aggressively modern institutions of mental health science and on the other, extant and surviving institutions of faith-based healing practices? While we remain critically mired in faith-based practices, while we cannot but be critical of some faith-based practices, we also cannot announce the silent demise of all Other imaginations of health and healing and let One global discourse take hold of all cultures. Hence, perhaps the need for what we have called the difficult ‘dual critique’. For critique also means an account of and an attention to experience and practice; an account formulated on its own terms and not on terms put in place by globalizing discourses.
Mental Health Care, Diagnosis, and the Medicalization of Social Problems in Ukraine
This paper focuses on cultural issues associated with reforms of the mental health system in Ukraine. Specifically, the paper will explore the adoption of the International Classification of Diseases (ICD-10), with its heavy focus on biomedical definitions of health and illness, and the applicability of applying this model cross-culturally. Using first hand ethnographic data with psychiatrists, social workers and advocates, as well as patients or ‘bolnoi’ (bolnoi translates literally as ‘an ill person’) of psychiatric services, I argue that ‘mental illness’ is not always, or solely, biological, but also culturally shaped, and therefore a ‘one-size-fits-all’ approach to mental health becomes problematic. I follow this argument with a discussion of how social problems more generally come to be redefined in Ukraine as medical in nature, where issues such as gender relations, alcoholism, poverty and environmental disasters are subject to medicalization. Here ‘symptoms of oppression’ or ‘distress’ are diagnosed within a psychiatric framework and become ‘symptoms of illness’, to be treated within the biomedical arena. This redefinition places the responsibility for larger societal issues on the individual and ignores the social and environmental underpinnings of suffering – a dynamic that was also operative in the Soviet system. I argue that the growing popularity of the medicalization of behavior coupled with its relationship with the pharmaceutical industry is thus a moral issue, and one with harmful results.
Passive-Aggressive: Māori Resistance and the Continuance of Colonial Psychiatry in Aotearoa New Zealand
This article offers a comparative discussion on the encroachment of psychiatric imperialism in the Global South through considering the continuance of western psychiatry in a colonized part of the Global North. Whereas the Indigenous population of Aotearoa New Zealand were considered mentally healthier prior to the 1950s, current statistics show that Māori are much more likely to experience a ‘mental illness’ and be admitted to psychiatric hospital compared to settler groups. A review of the literature highlights socio-economic variables and ‘acculturation’ issues as key to understanding the difference in prevalence rates. However, utilizing a ‘critical model’, influenced by writings on colonial psychiatry and race, it is demonstrated in this discussion that a crisis in colonial hegemony between the 1960s and 1980s led to an increased need for colonial psychiatry to pathologize a politically conscious Māori population. As the first academic article to attempt such a critical de-construction of psychiatric practice in Aotearoa New Zealand, it is recommended that future research is re-orientated towards a focus on the psychiatric institution, and the institution of psychiatry, as a site of colonial power and social control.
Neurasthenia Revisited: Psychologising precarious labor and migrant status in contemporary discourses of Asian American nervousness
Neurasthenia—a term first coined by American neurologist George M. Beard in the 1860s—was a ‘malady of civilization’ associated with cerebral overpressure from the stresses of modern industrial life (Rabinbach, 1992:154). Many scholars of neurasthenia assume this psychopathological ‘disease of the will’ was a white disease that disappeared from Western medical practice since the early twentieth century. However, in this paper, I argue that not only has neurasthenia traveled to non-Western contexts, but that its genealogy as a culture-bound syndrome continues to haunt the present in North American cross-cultural counselling. Through a textual analysis of multicultural psychology textbooks published over the last decade, I argue these ‘traits’ serve to sequester problems of oppression into the private, apolitical space of family and culture, renarrativizing experiences of racial profiling, classroom segregation, worker disablement, and poverty as culturally determined mental health problems.
Tools for the journey from North to South: A collaborative process to develop reflexive global mental health practice
Kate Suffling, Lynn Cockburn, and Kim Edwards
ICDR-Cameroon is a group working on disability and inclusion issues in Cameroon. Through their mental health work, various complex social, ethical, and relational issues have been encountered and the need arose to engage in a reflexive process that would integrate shared experiences, the broader discourse on global mental health, and other resources. The group participated in discussion, story sharing, research, and critical analysis, a process from which a document called ‘Tools for the Journey’ was created as a road map for the group’s work. The document includes a position statement outlining the group’s stance on various issues, in addition to additional resources. This paper describes the group’s reflexive process in creating Tools for the Journey, the benefits of this process in terms of group and individual understanding and development, and the challenging themes encountered in their work in Cameroon.
Voices from the Field
The Cape Town Declaration (2011)
Pan African Network of People with Psychosocial Disabilities (PANUSP)
Global Mental Health, Human Rights and Development
Mental Health in Kenya: Not yet Uhuru
Should wellbeing and distress be addressed by health policy and medical funding, or be understood outside of a medical framework? The work of USP-Kenya
A short conversation with Arthur Kleinman about his support for the global mental health movement
A few months ago, the independent Spanish online newspaper El Diario published a cartoon entitled “Ebola in Madrid”. It showed a health worker, camouflaged in a green protection suit, wearing a white head shield and goggles, leaning over a patient almost completely hidden under the sheets of the hospital bed. The huge hospital room is deserted and empty, virtually looted. It resembles an evacuated department store, but depicts a worn down, abandoned hospital floor. The health worker addresses the patient, saying: “Now the most important thing is that you get calm and relax. We should not disregard the possibility that the virus dies from boredom”.
The cartoon was published in the first week of August 2014, when a Spanish missionary, sick with Ebola, was repatriated from Liberia to his home country. It sarcastically staged two things: the helplessness of health professionals against a deadly disease in the absence of an effective treatment; and a decaying Spanish health care system, which is pictured as literally falling apart, ill prepared to care for those suffering from a highly contagious and deadly disease.
Two months later, Ebola is once again on the front page of every Spanish newspaper with spectacular information: Teresa, one of the nurses who had cared for the repatriated missionary in August, was diagnosed with Ebola herself and later admitted to the infectious disease unit of one of Madrid’s large University Hospitals, Carlos III. The news for Spain was dire indeed: this case was the first person-to-person transmission of the virus outside of Africa. Was Spain “evolving towards Africa,” to use a phrase from Jean and John Comaroff (Comaroff and Comaroff 2011)? The European Union demanded explanations from the Spanish Ministry of Health and sent an expert commission to investigate the case, which concluded that Spain was ill-prepared for a potential epidemic. On the ground, health professionals working in the Carlos III hospital gathered every day in front of the building in protest, denouncing their deteriorating working conditions. Meanwhile, the Spanish government blamed Teresa for having been negligent during the care of the missionary – an accusation that triggered a twitter firestorm in defence of the nurse: #TodosSomosTeresa (we are all Teresa)! Even more so, the blame was returned: health professionals, activist groups, and engaged citizens demanded the resignation of Ana Mato, the Spanish Minister of Health: #AnaMatoDimision. Protesters accused the government of neglect and demanded immediate political change.
As helpless as health professionals may seem against treating Ebola in an individual patient, they are far from passive figures in the political scandal surrounding the disease in Spain. On the contrary, they are vigorous participants turning the medical debate into a political one. Doctors, nurses and activist citizens are using the case of Ebola in Spain as a mouthpiece to make their voices and opinions on public health heard. Ebola itself is not on trial. It is not the virus that is accused of killing. It is not even a fear of contagion triggering “irrational” and “violent” riots by a desperate population and its doctors (as has been reported from West Africa in Spanish media). Instead, on trial is a political system of patronage, hubris and arrogance, which governs despite the contempt of its citizens.
Also on trial is the political trend to privatize and underfund an institution Spanish citizens care very much about: their public health service. A journalist wrote in the newspaper El Diario one day after Teresa was diagnosed with Ebola: “The origin of the problem is in the Government. The real virus is a policy which is destroying without pity the health services and public health.” (El Diario, 2014).
Such accusations conjure images of the late 1980’s and early 1990’s AIDS movements in the U.S., when a pharmaceutical treatment was not yet publicly available. “Die-ins,” posters showing names and faces of AIDS victims subtitled “Killed by the Government,” and other highly symbolic expressions and events surrounding AIDS activism have subsequently become part of a global protest repertoire against governmental politics of epidemic denial and ignorance. Moreover, in European countries, such public displays of discontent with governmental health policies have recently become powerful means of contesting the politics of public service privatisation and austerity measures, at least in countries with national health services, like Spain and the U.K.
The Ebola protests in Spain, which always already go beyond a single disease in their claims and problematizations, represent more than a singular outrage against the governmental response to a contagious infection. They are not simply another reaction to a global politics of fear and panic in the face of an “African fever” (Seah 1978), as Ebola was termed in the 1970s, where racialized security measures are omnipresent in the form of border controls and surveillance. Rather, Ebola protests are an extension and intensification of protests against a politics of austerity and privatization in the domain of health care, which have been continuous in Spain since the autumn of 2012. In a country where Ebola is far from having taken on epidemic proportions, the disease figures as a metaphor in the protests against governmental public health politics without being the actual reason for them. A sick state is on trial––a state whose governors reign for their own sake, a state who is sick from its economic policies.
Much anthropological work on Ebola in West Africa has argued that revolts of “the local population” against the disease, treatment measures and foreign aid must be seen in larger political contexts of post-colonial medical interventions, neoliberal global health policies and cultural and symbolic practices of death, disease and suffering. (See, for example, Cultural Anthropology’s series of posts on “Ebola in Perspective” as well as other pieces in Somatosphere’s “Ebola Fieldnotes” series). The same is true for Ebola in Spain, even in the absence of an epidemic. The political and medical responses to an epidemic need always to be seen in a larger picture of societal discourse and historical change – taking into account the disease itself, but also the larger political problematization of health, illness and medical care. As disease historian Charles Rosenberg has outlined, every culture “constructs its specific response to an epidemic” (Rosenberg 1992). Medical anthropologists working on epidemics and epidemic threat have very well shown that this is true even in the absence of an “epidemic event” (Caduff 2014), as is currently the case in Spain. Preparedness, biosecurity interventions, disaster trainings, and targeted funding are all examples of highly politicized and oftentimes culturally specific responses to the governing of disease, even if the disease has not become an actual epidemic yet, and maybe never will.
What makes Ebola protests in Spain specific in Rosenberg’s sense is thus not the usual repertoire of “ biosecurity” and fear that Andrew Lakoff has describe as one of two contemporary “regimes of global health” (Lakoff 2010). What makes Ebola protests in Spain specific is that they represent a particular form of public fear, namely the fear that structural changes in its health care system makes Spain “unprepared”. Vinh-Kim Nguyen (2014) and Guillaume Lachenal (2014) have recently shown how Ebola in West Africa was indeed a systematic preparation of unpreparedness, beginning with the infamous structural adjustment policies of the 1980s, which destroyed young post-colonial public health systems, up to recent pharmaco-philanthropic policies of disease control, which invest in very narrow scientific and epidemiological targets only instead of strengthening health systems and public health services as such. It is exactly this kind of unpreparedness that is feared in Spain, where the economic crisis of 2008 has become a “chronic crisis” (Vigh 2008), and where measures of austerity and privatization have become the norm. Ebola makes this fear of unpreparedness with all its deadly consequences highly visible. The Ebola protests are a sign of the increasing public and medical concern with austerity measures, put in place by a politically and economically sickening Spanish welfare state and a political class that is seen as highly incompetent by many citizens and protestors.
On an European time scale, Spain’s welfare state is quite young; its national health service dates back to the mid 1980s. It was only with the Spanish Constitution of 1978, after the Franco dictatorship had ended, that citizens were granted a right to health protection, a right that the state guarantees. With the democratic transition in Spain, health protection thus became not only a citizen’s right but also an obligation of the young democratic welfare state. Inscribing a right to health care in the Spanish constitution thereby paralleled nationally the global movement for primary health care and the right to health of the 1970s, famously reaffirmed in the declaration of Alma Ata in 1978. With the General Law of Public Health of 1986 (Ley General de Sanidad, LGS), public health care in Spain was universalized, transforming a former social security system into a national health system, like the United Kingdom’s NHS. Despite discussions and political struggles among economists, politicians and health professionals about the viability of such a national health service, Spanish citizens gradually came to embody this system with its principles of universality, high-quality and gratuity. Today, citizens and medical professionals alike express pride for “their” health system and their strong identification with it: “The public health system is the best thing we have” – “In international comparison, we have one of the best public health systems of the world”. In short, citizens and professionals have developed affective attachments to the state-led system of public health and take it politically for granted, deeply appreciating its values of universality and solidarity. The Ebola protests in Madrid have to be seen in this context. They are in effect a continuation and intensification of the Marea Blanca – the white tide – in which doctors, nurses and citizens have defended a welfarist healthcare system only one generation old, a system that has become “theirs” and that they fear to loose. But there are other fears and angers that become visible through the Ebola protests.
There is fear for the future of universal and high quality medical care that protects everybody, not only from epidemics as Ebola but also from other illnesses. There is fear for the future of the welfare state as such. There is fear for the social and political progress of a country that has just recently and “recalcitrantly” turned “modern” (Elena Delgado, Mendelson, and Vázquez 2007). There is anger about political “incompetence” and “corruption” of a political class, attributes which are usually attributed to “weak” or “failed states” (Kosmatopoulos 2011; Li 2005) in the South. Images as the one below, taken at a Marea Blanca demonstration a year ago show protesters who hold elements of Picasso’s Guernica as warning signs. Such images illustrate fears that history repeats itself; that Spain falls back in not so distant pasts where politics of death and mass graves were part of Spanish life (Ferrándiz 2008); that Spain – once again – becomes Europe’s Southern Other, Europe’s internal outback, Europe’s Africa. In sum, fear that Spain is becoming a terrain on which Ebola cannot be controlled.
Again, is Spain “evolving toward Africa” (Comaroff and Comaroff 2011)? Obviously the answer cannot be “yes” or “no”. There is no anthropological reason for asking such a question literally, as it risks contributing to European fears of degeneration, of becoming like the world’s most disease ridden region, of becoming the eternal “Other”. Yet there are good reasons to ask this question––as Europeanists––in the way that Africanists John and Jean Comaroff have posed it––namely as a heuristic provocation. Understood as such, the question allows us to take seriously those dark imaginaries and enraged visions that animate current protests in Spain, inspired as much by historical experience as by a “nostalgia for the future” (Piot 2010)––not at all unlike those experiences and desires that have been described for African countries after high peaks of modernization. Anthropologists have always been good at taking people seriously in their ordinary experience of historical change and future life (Das 2007), in their ways of making sense of the everyday politics of domination, violence and precarity (Allison 2013; Comaroff and Comaroff 2000; Fassin 2007; Vaughan 1991; White 2000) while paying attention to their wishes that the world could be otherwise (Povinelli 2012). It is in this sense that the Comaroffs’ provocation to theorize the North from the South is to be understood: as an invitation to read contemporary Europe through Southern anthropologies in an attempt to move beyond opposition and demarcation, clear cut boundaries and geographical plausibilities.
So what could it mean to think Ebola protests in the North from the South? On a very practical public health level, it could mean that the North should think twice before repeating the mistakes they have inflicted on the South, when international organisations governing from the North – like the World Bank or the International Monetary Fund – have promoted structural adjustment and privatization to newly independent nations, leaving their health systems in “ruins” (Geissler 2013). This is an argument which has indeed been made by political economists (Stuckler and Basu 2013). On a theoretical level, to think the Ebola protests from the South could mean that one has to take the current anxieties of Spanish doctors and nurses – anxieties of becoming increasingly unprepared for Ebola, much like the South today – seriously, instead of dismissing them as a transient outcry in the face of pandemic panic. Even if Ebola is not a medical crisis in Spain and most probably won’t be one in the future, Ebola protests attest to a profound political unease, triggered by sincere concerns with the future effects of current public health policies. These are policies which have been experimented with in Africa with deadly consequences. Yet the determination of the Spanish protestors against the policies of their sick state indicate a strong desire for another future of public health, a future in which states newly (and maybe differently) invest in old political values such as solidarity, welfare and public service. As such, the current protests are not only hopeful signs for the future, but also intriguing fields of research where different visions of conflicting biopolitics are in the making.
Janina Kehr studied Anthropology and Political Sciences at the University of Göttingen and the University of California Santa Cruz. She received her PhD in Anthropology from the Ecole des Hautes Etudes en Sciences Sociales Paris and the Humboldt University of Berlin in 2012. Since 2011, she has worked as researcher at the Institute for the History of Medicine in Zurich. Currently she is preparing a book manuscript entitled “Global Health at Home”, which looks at the governance of tuberculosis in two Western European countries, France and Germany, in the 21st century. Her new research project concerns medical belonging, health citizenship and biopolitical nostalgia in austerity Europe. She writes about ongoing research activities – more or less regularly – on her blog “Medical Modernities.”
Allison, Anne. 2013. Precarious Japan. Durham and London: Duke University Press.
Caduff, Carlo. 2014. “Pandemic Prophecy, or How to Have Faith in Reason.” Current Anthropology 55 (3): 296–315. doi:10.1086/676124.
Comaroff, Jean, and John L. Comaroff. 2000. “Millennial Capitalism: First Thoughts on a Second Coming.” Public Culture 12 (2): 291–343.
———. 2011. Theory from the South: Or, How Euro-America Is Evolving Toward Africa. Boulder, San Francisco, Oxford: Paradigm Publishers.
Das, Veena. 2007. Life and Words : Violence and the Descent into the Ordinary. Berkeley: University of California Press.
Elena Delgado, L., Jordana Mendelson, and Oscar Vázquez. 2007. “Introduction: Recalcitrant modernities—Spain, Cultural Difference and the Location of Modernism.” Journal of Iberian and Latin American Studies 13 (2-3): 105–19. doi:10.1080/14701840701776173.
Fassin, Didier. 2007. When Bodies Remember: Experiences and Politics of AIDS in South Africa. Berkeley and Los Angeles: University of California Press.
Ferrándiz, Francisco. 2008. “Cries and Whispers: Exhuming and Narrating Defeat in Spain Today.” Journal of Spanish Cultural Studies 9 (2): 177–92. doi:10.1080/14636200802283704.
Geissler, P. Wenzel. 2013. “Stuck in Ruins, or Up and Coming? The Shifting Geography of Urban Public Health Research in Kisumu, Kenya.” Africa: The Journal of the International African Institute 83 (4): 539–60. doi:10.1353/afr.2013.0054.
Kosmatopoulos, Nikolas. 2011. “Toward an Anthropology of ‘State Failure’: Lebanon’s Leviathan and Peace Expertise.” Social Analysis 55 (3): 115–42. doi:10.3167/sa.2011.550307.
Lachenal, Guillaume. 2014. “Chronique D’un Film Catastrophe Bien Préparé.” Liberation, September 18. http://www.liberation.fr/monde/2014/09/18/chronique-d-un-film-catastrophe-bien-prepare_1103419.
Lakoff, Andrew. 2010. “Two Regimes of Global Health.” Humanity: An International Journal of Human Rights, Humanitarianism, and Development 1 (1): 59–79. doi:10.1353/hum.2010.0001.
Li, Tania Murray. 2005. “Beyond ‘The State’ and Failed Schemes.” American Anthropologist 107 (3): 383–94. doi:10.2307/3567024.
Nguyen, Vinh-Kim. 2014. “Ebola: How We Became Unprepared, and What Might Come Next.” Cultural Anthropology. Accessed October 13. http://www.culanth.org/fieldsights/605-ebola-how-we-became-unprepared-and-what-might-come-next.
Piot, Charles. 2010. Nostalgia for the Future: West Africa After the Cold War. University of Chicago Press.
Povinelli, Elizabeth A. 2012. “The Will to Be Otherwise/The Effort of Endurance.” South Atlantic Quarterly 111 (3): 453–75. doi:10.1215/00382876-1596236.
Rosenberg, Charles E. 1992. Explaining Epidemics: And Other Studies in the History of Medicine. Cambridge ; New York: Cambridge University Press.
Seah, S. K. 1978. “Lassa, Marburg and Ebola: Newly Described African Fevers.” Canadian Medical Association Journal 118 (4): 347–48, 350.
Stuckler, David, and Sanjay Basu. 2013. The Body Economic: Why Austerity Kills. Basic Books.
Vaughan, M. 1991. Curing Their Ills. Colonial Power and African Illness. Stanford: Stanford University Press.
Vigh, Henrik. 2008. “Crisis and Chronicity: Anthropological Perspectives on Continuous Conflict and Decline.” Ethnos 73 (1): 5–24. doi:10.1080/00141840801927509.
White, Luise. 2000. Speaking with Vampires: Rumor and History in Colonial Africa. University of California Press.
 All translations from Spanish are mine.
 Marea Blanca, in English White Tide, is a social protest movement and monthly march of health professionals and citizens in Spain which was first realized in September 2012 in Madrid. The Marea Blanca protests against the privatization of hospitals and public health centres in Madrid, but also against sanitary exclusion of undocumented immigrants and other, recently excluded groups of people. Other Mareas protesting against politics of austerity and privatization also exist in Spain, in the domain of education for example.
[The Suffering Patient: Medicine questioned. A testimony.]
Ocho libros. 2013, Reprinted 2014. 171 pages.
Note: The original version of this review was written in Spanish by Sebastián Medina Gay and published in the Chilean Journal of Public Health (Rev. Chilena de Salud Pública 2014; 18(2):227-229). It has been translated into English by Jana Stojanova.
You must be somewhat of an exhibitionist, willing to show yourself, even though disguised behind characters of fiction, to write and publish a book. This becomes particularly evident in narratives that describe the personal experience of becoming ill: here the exposure is complete. While the body is penetrated in its most intimate parts by modern diagnostic techniques, subjectivity grows and takes over. Previously a silent associate in travel, love, and full moons, it now becomes a traitor, unworthy of trust. ‘Knowing oneself to be prone to illness’ appears like a pathetic prelude to ‘knowing oneself to be mortal’. It’s the tragic destiny of human existence that imposes itself forcefully; entering through the window we thought securely shut by private and supplementary health insurance plans.
The gloomy light of imminent death fills the hospital room where Miguel Kottow lies, suffering from Guillain-Barré syndrome. The probability of full recovery becomes a bad joke, when not even his anal sphincters can be controlled. This sombre scenario is punctured with loneliness. Human contact is substituted by machines and procedures subject to bureaucracy and protocols. A sick body lies in a sick-bed, alone in spite of the constant flow of family, friends, technicians and medical personnel, low-salt menus, and plasma screens. Kottow describes the loneliness of existing in a world filled with technical objects and technicians turned objects. El Pa[de]ciente is a book about a human being who (literally) falls ill and then is trapped (literally) in diagnostic and therapeutic technology.
Yet there is an additional dimension to this book: Miguel Kottow, the patient protagonist, is a physician–a practicing ophthalmologist. He analyses his own symptoms and signs, evaluating the diagnostic performance of his colleagues; he pesters the hospital staff with superfluous questions, obsessively monitoring data from every medical exam. Worst of all, he vaguely imagines that he will write and publish a book, encouraged by a colleague and friend, who loans him a ‘tape-recorder-confessor’ in order to capture his sensations as a patient, as well as his accusations against a private system obviously conceived as a lucrative business. Kottow writes that “the set of interests, institutions and protocols interposed between patient and therapy determine the type, form, mode of administration and dosage of treatments, the frequency and magnitudes of control test, the need, or not, to locate, if only by cell phone, the ‘treating’ physician or one in charge of the case. No, not the case: the affected organ or body segment.” Thus, the ophthalmologist criticizes the technician’s eye, blinded by the dance of bills.
There is more: the patient isn’t just any physician. Miguel Kottow is a well-known Chilean academic in Public Health, and has been honoured in his home country with the title “Distinguished Scholar in Bioethics”. I can imagine him, convalescing at home, transcribing the recordings of the most difficult days in the hospital. Kottow does not profess vindication resulting from his experience of the kind “I fell but could recover with the conviction of having learned a life lesson”. Nor does he wish to present a self-help text, although the book has already proved quite popular with a wide audience. El Pa[de]ciente, he says, has no lesson— neither something to be imitated nor a take-home message. Rather, it presents a sincere and existential reflection, criticizing fads and naturalizations of discourses centred on health, disease and medicine. For example, understanding disease as a symbol or as a journey, Kottow replies:
“the sufferer wants to end his distress, not signify it, knowing that empathy and accompaniment cannot pierce the private and internal character of the experience of pain and suffering. At the same time, his initial intuition about actual medical practice (a meagre remake of the original therapeutic role of the doctor, that would hardly further patients’ improvement), becomes the object of study and reflection. Thus the notion of the ‘Therapeutic Arc’ is developed, the space where ‘patients and doctors begin by not following a common path, diverging from the fleeting, clinical encounter, interfered and manipulated by the forces of administration and protocol. Face-to-face communication is episodic, limited and replaceable by health-care personnel and technical equipment’”.
We can now imagine how the bioethicist takes no rest as he listens to his recordings, surely looking back at his life, his wanderings, his theories and convictions. Perhaps he does find some lesson to be gleaned from his experience; perhaps he sees a radiant sun shining behind the fog of illness. Convinced that his narrative is compelling, he sees reason to expose himself on paper. His conviction is, I believe, that his story is similar to hundreds of narratives of helplessness, loss of autonomy, and exploitation by a sick system. In the end, it is a belief in the power of this story which moves Kottow to relearn the use of a keyboard and apply himself to listen, transcribe, reflect, notate, quote, justify, print, correct, convince an editor and, finally, to publish. Ultimately, Kottow appears to employ this platform to reach the public as extensively as possible, with the intimate hope that the transformation of reality can only be made possible by sharing, diverging, debating and reflecting. Something as simple as it is complex: the ability to dwell (construct, incorporate and be) in our similarities and differences.
Sebastián Medina Gay is a researcher and lecturer at the School of Public Health, of the University of Chile in Santiago. He works in community health in indigenous rural areas in southern Chile. He holds an MD from the University of Chile and a Master’s in Social Medicine, Universidad Autónoma Metropolitana, Mexico.
Jana Stojanova is a clinical pharmacist with a research interest in personalized medicine. She is part of the editorial team for the Chilean Journal of Public Health, published at the School of Public Health, of the University of Chile. She holds a Bpharm from the University of Sydney, and a PhD in Pharmacogenetics from the University of Limoges, in France.
The “Foreign Correspondents” series features reviews of books published in languages other than English. It is edited by Stephanie Lloyd (Laval University). If you would like to suggest a non-English language book for review or if you are interested in reviewing for “Foreign Correspondents,” please contact Stephanie directly at email@example.com.
Persistent pathogen: A conference report of anthropological research on tuberculosis by Emilio Dirlikov
The 2013 World TB Day theme was “Stop TB in my lifetime,” calling attention to both the goal of virtually eliminating tuberculosis (TB) by 2050, as well as the Stop TB Partnership, established in 2000, through which global antituberculosis activities are coordinated. Despite this valiant slogan, tuberculosis control is at an important crossroads. In 2012, there were an estimated 8.6 million incident cases of TB, of which approximately three million went undiagnosed (World Health Organization 2013a). That year, 1.3 million deaths were caused by TB (World Health Organization 2013b). Beyond health, TB continues to stymie productivity and negatively impact economic development (Jamison et al. 2013). Challenges such as increasingly drug-resistant strains, co-infection with HIV, and unsustainable funding structures threaten the gains made towards the Millennium Development Goals (MDGs) targets set for 2015 (Dye et al. 2013).
Despite its epidemiological and economic significance, TB has garnered scant anthropological attention, although a few notable exceptions bear mention. Erin Koch has examined the implementation of the DOTS strategy in post-socialist Georgia (Koch 2006, 2011, 2013a, b). The physician-anthropologists of Partners in Health (PIH), such as Paul Farmer and Salmaan Keshavjee, have used anthropological insights from their work in places like Haiti, Peru, Tajikistan, and Russia to create and advocate for better treatment programs (Farmer 1997, 2001, Keshavjee et al. 2008, Keshavjee et al. 2011). Ian Harper’s work on control efforts in Nepal has come through long-term support of program implementation (Harper 2006, 2010). Recently, anthropological interest on TB in a diversity of contexts around the world has notably increased. This trend has been buoyed by several doctoral projects, as well as Master-level research.
In order to bring together this burgeoning group of anthropologists, Ian Harper (University of Edinburgh) and Helen MacDonald (University of Capetown) formed a panel entitled “Infectious disease and wealth: exploring the links between tuberculosis and the political economy,” for the 2014 United Kingdom Association for Social Anthropology (UK ASA) conference, held from June 19-22. Panelists were asked to move beyond a simple linkage between social inequality, poverty, and TB in order to address:
“To what extent do or can attempts to control tuberculosis address the issues of underlying poverty around which the disease flourishes? How has the focus on drug treatments overshadowed other ways of addressing the control of the disease and what are the implications of this? What role does anthropology have in thinking about the relations between culture and economy with regards to tuberculosis, and how might these insights be important for policy and practice in the control of the disease?”
Here, I reflect on the full day of presentations in order to synthesize insights and distill the major themes that emerged from the conference papers. I focus on four themes:
1) Emphasis on History;
2) Importance of the Local;
3) Impact of the Global; and
4) Opportunities for Collaborations.
These themes were cross-cutting, and many of the panelists touched upon elements of all four in their presentation.
Theme I: Emphasis on History
Tuberculosis lends itself to taking a longue durée perspective in order to understand the impact of this ancient scourge on the contemporary. As opposed to historians of science and medicine, who have produced histories of TB in various contexts (e.g., Condrau and Michael 2010, Johnston 1995, Bryder 1988), anthropologists require a different relationship with historical antecedents, conditioned by encounters made possible through fieldwork.
For example, Bharat Venkat (University of California Berkeley) moved between past and present, recounting the history of the pivotal 1950s Madras Study, which shifted the treatment paradigm away from the sanatorium to out-patient care, through an interview with Dr. Radhakrishna, one of the study’s key statisticians (Tuberculosis Chemotherapy Centre 1959, Ramakrishnan et al. 1961). Venkat argued that the logic of the study was an attempt to move from “the unknowable temporality of the cure to the predictable future of the cure rate.” Yet the enduring promise of the cure, like all promises, can be broken, as seen in uncomfortable and often dangerous situations, such as irrational treatment and patient non-compliance.
In my presentation, I examined what I term the “price of free” in China—that is, the price of TB diagnosis and treatment despite current government programs that provide these services free of charge. Though the high costs patients reported could be interpreted as a major failure of the national program, I contextualized present control practices into a history of TB as the social disease. I argued that Chinese government policies instituted since 2000, such as the TB double free program and welfare reforms more generally, signal the emergence of a truly nationalized problem of tuberculosis in China, in terms of both scale and conceptual underpinnings.
Theme II: Importance of the Local
Tuberculosis continues to be a disease associated with poverty, as borne out by statistics. At the global level, TB is disproportionately found in low– and middle-income countries (LMICs). At the national level, TB proliferates along the fault lines of society, appearing primarily in disenfranchised communities, such as the poor, homeless, prisoners, minorities, immigrants, and indigenous groups (Lönnroth et al. 2010). In line with anthropology’s commitment to document social suffering and the experiences of the subaltern, panelists provided insightful accounts of at risk groups and patient perspectives that might be missed by other disciplines.
Drawing from research conducted in Mumbai, Ramila Bisht (Jawaharlal Nehru University) examined the risk of TB faced by healthcare workers. While media reports highlight doctors’ risk, she reveals that lower level healthcare workers, such as nurses, maintenance staff, and NGO outreach workers, are often more at risk, chancing exposure to TB out of fear of losing their jobs. Bisht advocates accounting for the health system as a whole in addressing the vulnerable situations all health workers who interact with TB patient find themselves confronting.
Working from Bilaspur district of Chhattisgarh state in central India, Helen MacDonald (University of Capetown) investigated the revealing and concealing power of numbers. She juxtaposed the deluge of statistics used in public health reports and media reports to more experiential understandings held by doctors at Jan Swasthya Sahyog, a non-profit organisation that treats TB patients. These doctors produced new metrics, which included body weight among other socioeconomic measures, in order to increase patient adherence and lower default rate. Such expanded metrics fit within a unique form of “care” and “empathy” not captured by state statistics.
Carina Truyts (University of Capetown) broadened the scope to consider the lived experience of TB patients in the suburbs of Cape Flats, South Africa. Her focus on the everyday was accompanied by a theoretical and methodological attention to the violence suffered by patients. This included the use of photographs and drawings made by patients in order to capture the unspoken or unsayable and avoid the potential violence of submitting patients to straight-forward interviews. Truyts concludes that the daily hardships experience by TB patients were compounded by structural inequalities that perpetuated cycles of violence.
Panelists faced the challenge of addressing macro processes that impact the TB epidemic while also attending to individual practices that facilitate transmission and activation of disease. In attempting to overcome this divide, Oriana Bras (Universidade de Lisboa) explored the social dimensions of TB in Rio de Janeiro at three distinct levels: structural, collective, and individual. Drawing on ethnographic examples, she illustrated that attention at each of these levels renders different problems and solutions. Combined, they offer a more robust, holistic approach to breaking the pathways through which the bacteria promulgates.
Theme III: Impact of the Global
In 1993, WHO Director-General Hiroshi Nakajima declared a “Global TB Emergency,” reviving attention to a disease that had largely fallen off the global agenda (Nakajima 1993). Since then, new antituberculosis organizations have proliferated, many of which work on a global scale. Several panelists positioned their research to investigate such organizations and accompanying global processes.
Presenting via Skype, Nora Engel (Maastricht University) outlined the difficulties of introducing newly developed TB diagnostics at points-of-care, with particular reference to India. She argued that although developers focus on the simplicity of diagnostic tests in order to maximize their applicability, paradoxically, this simplicity mutes the complexity of the situation at the primary health level. Engel proposes a greater inclusion of local expertise in the development and implementation of new technologies.
Ian Harper (University of Edinburgh) examined the modalities of financing mechanisms introduced by the Global Fund to fight AIDS, TB, and Malaria (Global Fund), focused on programs conducted in Nepal since 2002. He explained how under the Global Fund, new metrics have shifted the focus from program impact to program targets. While such metrics are designed to promote program efficiency and transparency, on the ground, the new modality for gathering data is not always productive and may create conflict within established local bureaucracies.
Justin Dixon (Durham University) presented the case of a long-term clinical trial of a new TB vaccine being carried out in South Africa. While the new vaccine has recently been shown to confer no added protection over the current vaccine, BCG, through the trial close to 3,000 underserved children were provided healthcare services. Dixon highlighted the relational and ethical predicaments of conducting clinical trials, especially in considering the legacy of inequality and structure of power that gives rise to TB.
Curiously, the geographic focus of presented papers may further reflect a destabilization of the old centers of “the global” by drawing attention to the growing significance of the BRICS countries (i.e., Brazil, Russia, India, China, and South Africa). BRICS are important for TB global control for at least three reasons. First, all five countries are part of the 22 designated high-burden countries (HBCs), and combined account for 46% of incident cases of TB, and 40% of global mortality (Creswell et al. 2014). Controlling TB in these countries thus impacts global progress. Second, individually, BRICS countries have historically championed innovative health programs, at times going against established norms and global paradigms. While challenges to health remain (Marten et al. 2014, Rao et al. 2014, McKee et al. 2014), novel strategies and technologies developed in these countries could be used elsewhere. Finally, since July 2011, BRICS’ Health Ministers have produced five joint communiques and one declaration on shared health challenges, and propose areas of collaboration. The January 11th 2013 meeting of the Ministers galvanized a commitment to combat TB, with a focus on multidrug-resistant (MDR) forms, demonstrating high-level political commitment (BRICS Health Ministers 2013). Anthropological research conducted in BRICS countries, such as the panelists’ working in Brazil, India, China, and South Africa, sheds light on the shifting importance of these countries for global TB control.
Theme IV: Opportunities for Collaborations
“How can anthropology be useful to overcoming inequalities [that give rise to TB] and to identify new intervention strategies to eradicate TB?,” asked Elisa Vasconi (L’Università di Siena). She posited: “the role of anthropology should go beyond the study of local knowledge and practice to stand to be a tool of political critique and transformative action.” Using long-term ethnographic fieldwork conducted in Ghana’s rural Western Region, Vasconi explored an innovative TB control program that made use of traditional medical practitioners for service delivery. Yet, which practitioners were employed, how they were trained, and issues that emerged in diagnosis and treatment present challenges to the success of control efforts. Ethnographic research, such as Vasconi’s, reveals these difficulties, providing insights that could be addressed through policy reform.
Vasconi was not alone in her search for the broader applicability of anthropological research. Indeed, most of the panelists conducted research through affiliations with antituberculosis health organizations, ranging from the global scale (i.e., Harper with the Global Fund, Engel with the Gates Foundation, Dixon with an international pharmaceutical company, and I worked with WHO and Family Health International 360), local hospitals (i.e., Bisht in Mumbai and Bras in Rio de Janeiro), and local NGOs (i.e., MacDonald in Bilaspur district, Bisht in Mumbai, and Truyst in Cape Flats). In effect, panelists shared a commitment to going beyond isolated anthropological investigations in order to collaborate with public health experts and policy makers towards improved programs and patient outcomes.
Harper’s work highlights the value of productive collaboration beyond the academy. Previously, he managed a TB control project in Nepal for three and a half years, and has also worked with NGOs in India for two years supporting community health programmes. More recently, in 2008, he worked in the Nepal National Tuberculosis Programme assisting with the implementation of the Global Fund program. Harper’s dedication to both anthropological research and programmatic support exemplifies the importance of establishing productive collaborations across multiple disciplines and sectors.
Conclusion: Towards the Anthropologies of Tuberculosis
What lessons can we, as anthropologists, take away from research and discussions about TB?
As seen, TB provides fertile ground for anthropological exploration. Here, I have highlighted themes that emerged from the presented papers, such as: the importance of history in anthropological research; a focus on local diversity and the experience of those affected by the disease; attention to global processes; and areas where anthropologists can work collaboratively with health organizations and beyond.
Emilio Dirlikov is a PhD Candidate in McGill University’s Department of Anthropology and Social Studies of Medicine. He is currently finalizing his dissertation, for which he spent two years conducting field research on tuberculosis control in China.
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Condrau, Flurin, and Worboys Michael. 2010. Tuberculosis then and now: perspectives on the history of an infectious disease. Montreal: McGill-Queen’s University Press.
Creswell, J, S Sahu, K. S. Sachdeva, L. Ditiu, D. Barreira, A. Mariandyshev, C. Mingting, and Y. Pillay. 2014. “Tuberculosis in BRICS: challenges and opportunities for leadership within the post-2015 agenda.” Bulletin of the World Health Organization no. 92 (6):459-60.
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Jamison, Dean T., Lawrence H. Summers, George Alleyne, Kenneth J. Arrow, Seth Berkley, Agnes Binagwaho, Flavia Bustreo, David Evans, Richard G. A. Feachem, Julio Frenk, Gargee Ghosh, Sue J. Goldie, Yan Guo, Sanjeev Gupta, Richard Horton, Margaret E. Kruk, Adel Mahmoud, Linah K. Mohohlo, Mthuli Ncube, Ariel Pablos-Mendez, Reddy K. Srinath, Helen Saxenian, Agnes Soucat, Karene H. Ulltveit-Moe, and Gavin. Yamey. 2013. “Global health 2035: a world converging within a generation.” Lancet no. 382 (9908):1898-1955.
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Keshavjee, Salmaan, Irina Y. Gelmanova, Paul Farmer, Sergey P.. Mishustin, Aivar K. Strelis, Yevgeny G. Andreev, Alexander D. Pasechnikov, Sidney Atwood, Joia S. Mukherjee, Michael L. Rich, Jennifer J. Furin, Edward A. Nardell, Jim Y. Kim, and Sonya S. Shin. 2008. “Treatment of extensively drug-resistant tuberculosis in Tomsk, Russia: a retrospective cohort study.” Lancet no. 372 (9647):1403-9.
Keshavjee, Salmaan, Mark Harrington, Gregg Gonsalves, Lucy Chesire, and Paul Farmer. 2011. “Time for zero deaths from tuberculosis.” Lancet no. 378 (9801):1449-50.
Koch, Erin. 2006. “Valuing Life, Weighing Death – Beyond suspicion: Evidence, (un)certainty, and tuberculosis in Georgian prisons.” American ethnologist. no. 33 (1):50.
Koch, Erin. 2011. “Local Microbiologies of Tuberculosis: Insights from the Republic of Georgia.” Medical Anthropology no. 30 (1):81-101.
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Here’s the first half of this month’s roundup. Enjoy.
The evidence that demonstrates the negative effects of maternal psychological stress during pregnancy on a wide variety of offspring outcomes is growing. Animal studies suggest that negative influences of maternal stress during pregnancy persist across multiple generations, but the direct evidence to confirm that the effect is present among human populations is scarce. This study draws evidence on the intergenerational influences of maternal stress from the Kwangju uprising (May 18–27, 1980), arguably the bloodiest incident that occurred in South Korea since the end of the Korean War in 1953. The results of difference-in-difference estimations suggest that in utero exposure to the Kwangju uprising significantly diminished the offspring birth weight and length of gestation, and increased the risks of low birth weight and preterm birth. Exposure to stress during the second trimester of pregnancy exerted the strongest negative effect on grandchildren’s birth outcomes.
Perceived quality of an alternative to acute hospitalization: An analytical study at a community hospital in Hallingdal, Norway
Øystein Lappegard, Per Hjortdahl
There is growing international interest in the geography of health care provision, with health care providers searching for alternatives to acute hospitalization. In Norway, the government has recently legislated for municipal authorities to develop local health services for a selected group of patients, with a quality equal to or better than that provided by hospitals for emergency admissions. General practitioners in Hallingdal, a rural district in southern Norway, have for several years referred acutely somatically ill patients to a community hospital, Hallingdal sjukestugu (HSS). This article analyzes patients’ perceived quality of HSS to demonstrate factors applicable nationally and internationally to aid in the development of local alternatives to general hospitals. We used a mixed-methods approach with questionnaires, individual interviews and a focus group interview. Sixty patients who were taking part in a randomized, controlled study of acute admissions at HSS answered the questionnaire. Selected patients were interviewed about their experiences and a focus group interview was conducted with representatives of local authorities, administrative personnel and health professionals. Patients admitted to HSS reported statistically significant greater satisfaction with several care aspects than those admitted to the general hospital. Factors highlighted by the patients were the quiet and homelike atmosphere; a small facility which allowed them a good overall view of the unit; close ties to the local community and continuity in the patient–staff relationship. The focus group members identified some overarching factors: an interdisciplinary and holistic approach, local ownership, proximity to local general practices and close cooperation with the specialist health services at the hospital. Most of these factors can be viewed as general elements relevant to the development of local alternatives to acute hospitalization both nationally and internationally. This study indicates that perceived quality should be one of the main motivations for developing alternatives to general hospital admissions.
Dispensing emotions: Norwegian community nurses’ handling of diversity in a changing organizational context
Jonas Debesay, Ivan Harsløf, Bernd Rechel, Halvard Vike
Since the mid-1990s, public sector health care services in Norway have been restructured, in line with New Public Management ideas. This restructuring has coincided with demographic changes that have led to a more culturally diverse patient population. Both developments have created new challenges for community nurses in managing their work. This qualitative study applies the concept of “emotional labor” to examine nurses’ experiences in working with ethnic minority patients in the context of pressures arising from organizational reforms. The analysis sheds light on the nurses’ attempts to comply with system-induced efficiency considerations, while catering to the special situation of patients with language barriers and unfamiliar cultural traditions. The article demonstrates how efficiency requirements and time constraints either aggravate the nurses’ insecurity in dealing with minority patients or, in some cases, compel them to assume more work responsibilities so as to mitigate the effects of such constraints.
What must I do to succeed?: Narratives from the US premedical experience
Katherine Y. Lin, Renee R. Anspach, Brett Crawford, Sonali Parnami, Andrea Fuhrel-Forbis, Raymond G. De Vries
How does a lay person become a doctor? How is a physician made? These questions have been central to work of medical sociologists for well over a half-century. Despite this abiding focus on socialization, nearly all of the literature on this process in the US is informed by studies of the medical school and residency years, with almost no empirical attention paid to the premedical years. Our study addresses this gap in knowledge. To better understand the premedical years we conducted 49 in-depth interviews with premedical students at a selective, public Midwestern university. We found that students understand and explain decisions made during the premedical years with narratives that emphasize the qualities of achievement-orientation, perseverance, and individualism. We also find that these qualities are also emphasized in narratives employed to account for the choice to collaborate with, or compete against, premedical peers. Examination of premedical narratives, and the qualities they emphasize, enriches our understanding of how premedical education shapes a physician’s moral development, and underscores the need to include the premedical years in our accounts of “becoming a doctor.”
We call it a virus but I want to say it’s the devil inside’: Redemption, moral reform and relationships with God among people living with HIV in Papua New Guinea
Angela Kelly-Hanku, Peter Aggleton, Patti Shih
There is growing recognition of the importance of religion and religious beliefs as they relate to the experience of HIV, globally and in Papua New Guinea in particular. Based on 36 in-depth qualitative interviews conducted with people living with HIV receiving HIV antiretroviral therapy in 2008, this paper examines the cultural aetiology of HIV of in Papua New Guinea, the country with the highest reported burden of HIV in the Pacific. Narratives provided drew upon a largely moral framework, which viewed HIV acquisition as a consequence of moral failing and living an un-Christian life. This explanation for suffering viewed the individual as responsible for their condition in much the same way that neo-liberal biomedical discourses do. Moral reform and re-establishing a relationship with God were seen as key actions necessary to effect healing on the material body infected with HIV. Religious understandings of HIV drew upon a pre-existing cultural aetiology of dis-ease and misfortune widespread in Papua New Guinea. Understanding the centrality of Christianity to explanations of disease, and subsequently the actions necessary to bring about health, is essential in order to understand how people with HIV in receipt of antiretroviral therapies internalise biomedical perspectives and reconcile these with Christian beliefs.
The effect of social support on the health of Indigenous Australians in a metropolitan community
Pippa Waterworth, Michael Rosenberg, Rebecca Braham, Melanie Pescud, James Dimmock
The factors driving the disparity in health outcomes between Indigenous and non-Indigenous Australians continue to be poorly understood. Despite this, studies confirm that social connections are a very important part of Indigenous life, and it is likely these connections play an important role in influencing health outcomes among this population. Examining the support provided by social connections in relation to health behaviour may assist our understanding of health outcomes among Indigenous Australians. The current study is focused on exploring Indigenous participants’ impressions of their social network and social support using Participatory Action Research methodology and qualitative methods. The objective was to identify the influence of social support on the health outcomes of Indigenous people within a Western Australian metropolitan community. Seventeen members of the community were interviewed during the study. The participants had extensive social networks that mainly comprised members of their kinship group. The consequences of this social network included: (1) the positive effects of social support from bonded relationships; (2) the negative effects of social support produced by over-obligation and unidirectional support involving bonded relationships; (3) limited or inadequate social support caused by withdrawal from bonded relationships; (4) lack of social support from bridging relationships; and (5) a strong desire for connection and a sense of belonging.
Social capital, collective action and access to water in rural Kenya
Elijah Bisung, Susan J. Elliott, Corinne J. Schuster-Wallace, Diana M. Karanja, Abudho Bernard
Globally, an estimated 748 million people remain without access to improved sources of drinking water and close to 1 billion people practice open defecation (WHO/UNICEF, 2014). The lack of access to safe water and adequate sanitation presents significant health and development challenges to individuals and communities, especially in low and middle income countries. Recent research indicates that aside from financial challenges, the lack of social capital is a barrier to collective action for community based water and sanitation initiatives (Levison et al., 2011; Bisung and Elliott, 2014). This paper reports results of a case study on the relationships between elements of social capital and participation in collective action in the context of addressing water and sanitation issues in the lakeshore village of Usoma, Western Kenya. The paper uses household data (N = 485, 91% response rate) collected using a modified version of the social capital assessment tool (Krishna and Shrader, 2000). Findings suggest that investment in building social capital may have some contextual benefits for collective action to address common environmental challenges. These findings can inform policy interventions and practice in water and sanitation delivery in low and middle income countries, environmental health promotion and community development.
The psychological toll of slum living in Mumbai, India: A mixed methods study
Ramnath Subbaraman, Laura Nolan, Tejal Shitole, Kiran Sawant, Shrutika Shitole, Kunal Sood, Mahesh Nanarkar, Jess Ghannam, Theresa S. Betancourt, David E. Bloom, Anita Patil-Deshmukh
In India, “non-notified” slums are not officially recognized by city governments; they suffer from insecure tenure and poorer access to basic services than “notified” (government-recognized) slums. We conducted a study in a non-notified slum of about 12,000 people in Mumbai to determine the prevalence of individuals at high risk for having a common mental disorder (i.e., depression and anxiety), to ascertain the impact of mental health on the burden of functional impairment, and to assess the influence of the slum environment on mental health. We gathered qualitative data (six focus group discussions and 40 individual interviews in July–November 2011), with purposively sampled participants, and quantitative data (521 structured surveys in February 2012), with respondents selected using community-level random sampling. For the surveys, we administered the General Health Questionnaire-12 (GHQ) to screen for common mental disorders (CMDs), the WHO Disability Assessment Schedule 2.0 (WHO DAS) to screen for functional impairment, and a slum adversity questionnaire, which we used to create a composite Slum Adversity Index (SAI) score. Twenty-three percent of individuals have a GHQ score ≥5, suggesting they are at high risk for having a CMD. Psychological distress is a major contributor to the slum’s overall burden of functional impairment. In a multivariable logistic regression model, household income, poverty-related factors, and the SAI score all have strong independent associations with CMD risk. The qualitative findings suggest that non-notified status plays a central role in creating psychological distress—by creating and exacerbating deprivations that serve as sources of stress, by placing slum residents in an inherently antagonistic relationship with the government through the criminalization of basic needs, and by shaping a community identity built on a feeling of social exclusion from the rest of the city.
Enacting the ‘neuro’ in practice: Translational research, adhesion and the promise of porosity
Caragh Brosnan, Mike Michael
This article attends to the processes through which neuroscience and the neuro are enacted in a specific context: a translational neuroscience research group that was the setting of an ethnographic study. The article therefore provides a close-up perspective on the intersection of neuroscience and translational research. In the scientific setting we studied, the neuro was multiple and irreducible to any particular entity or set of practices across a laboratory and clinical divide. Despite this multiplicity, the group’s work was held together through the ‘promise of porosity’ – that one day there would be translation of lab findings into clinically effective intervention. This promise was embodied in the figure of the Group Leader whose expertise spanned clinical and basic neurosciences. This is theorized in terms of a contrast between cohesion and adhesion in interdisciplinary groupings. We end by speculating on the role of ‘vivification’ – in our case mediated by the Group Leader – in rendering ‘alive’ the expectations of interdisciplinary collaboration.
Ambivalence, equivocation and the politics of experimental knowledge: A transdisciplinary neuroscience encounter
Des Fitzgerald, Melissa M Littlefield, Kasper J Knudsen, James Tonks, Martin J Dietz
This article is about a transdisciplinary project between the social, human and life sciences, and the felt experiences of the researchers involved. ‘Transdisciplinary’ and ‘interdisciplinary’ research-modes have been the subject of much attention lately – especially as they cross boundaries between the social/humanistic and natural sciences. However, there has been less attention, from within science and technology studies, to what it is actually like to participate in such a research-space. This article contributes to that literature through an empirical reflection on the progress of one collaborative and transdisciplinary project: a novel experiment in neuroscientific lie detection, entangling science and technology studies, literary studies, sociology, anthropology, clinical psychology and cognitive neuroscience. Its central argument is twofold: (1) that, in addition to ideal-type tropes of transdisciplinary conciliation or integration, such projects may also be organized around some more subterranean logics of ambivalence, reserve and critique; (2) that an account of the mundane ressentiment of collaboration allows for a more careful attention to the awkward forms of ‘experimental politics’ that may flow through, and indeed propel, collaborative work more broadly. Building on these claims, the article concludes with a suggestion that such subterranean logics may be indissociable from some forms of collaboration, and it proposes an ethic of ‘equivocal speech’ as a way to live with and through these kinds of transdisciplinary experiences.
Rejecting knowledge claims inside and outside science
Citizens, policy-makers and scientists all face the problem of assessing maverick scientific claims. Via a case study, I show the different resources available to experts and non-experts when they make these judgements and reflect upon what this means for technological decision-making in the public domain.
This article draws on empirical material concerning the communication and use of knowledge in experimental physics and its relations to the culture of theoretical physics. The role that trust plays in these interactions is used to create a model of social distance between interacting theoretical and experimental cultures. This article thus seeks to reintroduce trust as a fundamental element in answering the problem of disunity in the sociology of knowledge.
Catelijne Coopmans, Graham Button
‘Tacit’ and ‘explicit’ knowledge, and their relation to expertise, have a long-standing importance within social studies of science and technology. At the centre of the development of thinking about these topics has been the work of Harry Collins and Robert Evans. In this article, we bring to bear observations of the work of people involved in grading eye disease, and their seeming display of expertise, tacit and explicit knowledge, on three thrusts identified in the work of Collins, and Collins and Evans. These thrusts are the following: (1) a concern with the appearance of tacit knowledge in the activities of experts, (2) a commitment to studying expertise as ‘real’ and substantive rather than attributed, and (3) a commitment to promoting the recognition and fostering the management of expertise by providing analytical distinctions regarding expertise and its reliance on tacit knowledge. By considering what is involved in the work of grading eyes, we relocate the interest in tacit and explicit knowledge, and their bearing on expertise, in how expert knowledge is displayed and made recognizable in and through courses of action and interaction.
Actor and analyst: A response to Coopmans and Button
Harry Collins, Robert Evans
We question the logic of Coopmans and Button’s critique of our analysis of expertise on three grounds. First, their critique depends on a clear distinction between actor and analysts that we show cannot be maintained. Second, we question their reticence to allow the use of taxonomies in the analysis of expertise, suggesting that it is contradicted by their own descriptions of expert work, and we accuse them of making a mistake in the way they relate commonsense to specialist skills. Finally, we express our puzzlement at the antiseptic-like precautions that some ethnomethodologists apply to analysts’ categories, especially given that – as we show – analysts’ categories sometimes provide a superior resource for understanding and can change the actors’ world as well as describing it.
This paper offers a counterpoint to the prevailing account of waste in the human sciences. This account identifies waste, firstly, as the anomalous product of arbitrary social categorizations, or ‘matter out of place’, and, secondly, as a distinctly human way of leaving behind and interpreting traces, or a mirror of culture. Together, these positions reflect a more or less constructivist and anthropocentric approach. Most commonly, waste is placed within a framework that privileges considerations of meaning over materiality and the threat of death over the perpetuity of life processes. For an alternative I turn to bio-semiotics and cross-species scholarship around the question of the animal. Specifically, the paper asks what theories of waste would look like if instead of taking ‘dirt’ as their starting point, they began with trans-species encounters with animal scat. Following bio-semiotics and efforts to deconstruct the animal/human binary, it is suggested that the objectual forms commonly referred to as ‘waste’ are not arbitrarily classified but purposefully expended, and thus symptomatic of life’s spatio-temporal continuation. Waste matter, therefore, is best construed not as anthropocentric but as semi-biotic: a sign of the form of life to which it once belonged. This alternative perspective has implications for how approaches to industrial forms of mass waste can be reconceived.
Race, Time and Folded Objects: The HeLa Error
Given their commitment to practices, science studies have bestowed considerable attention upon objects. We have the boundary object, the standardized package, the network object, the immutable mobile, the fluid object, even a fire object has entered the scene. However, these objects do not provide us with a way of understanding their historicity. They are timeless, motionless pictures rather than things that change over time, and while enacting ‘historical moments’ they do not make visible the histories they contain within them. What kind of object could embody history and make that history visible? Inspired by Michel Serres, I suggest the folded object is a way to attend to the temporality and spatiality of objects. In this article I explore this new object by unravelling the history of a DNA reference sequence. I show how, ever since it was produced in the early 1980s, attempts have been made to filter race out of the sequence. That effort has failed due to what one could call ‘political noise’. Making and remaking the sequence have left traces that cannot be erased.
Conference Synopsis: The End of biodetermism? New Directions for Medical Anthropology by Samuel Taylor-Alexander
What is biodeterminism? Has it ended and did it ever exist? Earlier this month at Aarhus University, these seemingly straightforward questions resulted in three days of fascinating conversation during a conference titled “The End of biodetermism? New Directions for Medical Anthropology.” The event, co-organized by the Centre for Cultural Epidemics (EPICENTER), the Interacting Minds Centre for the Study of Cognition, and the Department of Culture and Society, entailed a rethinking of the ends of not only genetic determinism but also the human body itself. In a series of three thematic sessions that covered topics ranging from a new meditation/MRI nexus to epigenetics, and PTSD/Ugandan ghosts, the invited speakers engaged the indeterminacy of contemporary technomedicine to raise new conceptual and methodological problems for anthropology. From the opening paper by Margaret Lock who spoke of the “miniaturisation” of the “environment” in molecular epigenetics through to Mette N. Svendsen’s multispecies ethnography where research piglets are configured as sacrificial subjects, numerous questions where opened up about the plural ends of multivariate determinisms. Further, the likes of Allan Young’s intriguing anthropology of bacteria asked us to once again question the human self and its endpoints. As Young described to the audience how bacteria have become social, he also altered us to their significance in the constitution of our biological selves.
A refiguring of the biological and social nexus provided a key a conceptual tool for presenters. As they opened and closed the space between the two domains and brought in material and environmental factors, they showed how anthropology could contribute to emerging trends in science. David Napier suggested that a possible avenue to do this was by “redefining sociobiology as the impact of social practices on biological mechanisms” as a way to elucidate the “syndemic and symbiotic nature of human practices” and their historical transformations. Daniel Lende provided a neuroanthropology of addiction that recast the “addiction is a brain disease” paradigm. Drawing on his informants’ embodied experiences of a “high” and situating drug use in the lifeworld of the user to inform the sciences of addiction, Lende proposed a more grounded and local approach to combating drug abuse. Des Fitzgerald spoke about stress in the neurological city post-determinism by telling us how “recent epigenetic and neurodevelopmental attention to the nexus of metropolitan and mental life has significantly re-animated, and torqued” the connection between stress and urban life. Again, produced within this research are oft hidden notions of responsibility that require social scientists to engage with the fluid rights of urban citizens as they are molded to and with urban space itself.
Emerging early was a debate about the ability of anthropology and the social sciences to intervene, to produce experimental modes of collaboration that will themselves act as critique. Should we design new forms of interdisciplinary collaboration in order to inform and influence scientific practice? What would be the benefits and limitations of such projects? In his presentation on “co-laborative ontography,” Jörg Niewöhner suggested that social scientists should abandon criticism from afar in favor of an integrative form of investigation that introduces anthropological insights into molecular biology research. Discussion reminded us that in order for a middle ground to be forged it is necessary first to map out the landscape that is obscured and obfuscated by scientific reductionism. In both his closing remarks and his paper on Mindfulness Based Stress Reduction and their MRI measurements, conference organizer Andreas Roepstorff reminded us that the language and methods of science remain central to institutional modes of understanding the world; the quantification of emerging treatments that may otherwise contravene established biomedical approaches to illness allows them, and the measurement of nature, to remain within the domain of science.
Above and beyond the topic of “biodetermism” a number of talks examined the epistemic and practical suffocation resulting from deterministic projections in science and public policy. Offering the notion of horizons, Adriana Petryna discussed how scientists are “quantifying points of no return for ecosystems under threat” and how these points are perpetually refigured as new understandings of environmental complexity are introduced into scientific models. In the realm of global public health as Susan L. Erikson explained, social determinants of health “distract attention away from the new ways commodifying health makes money and alters health services-scapes.” Using ethnographic insights from India to forge an analysis that moved between how “bacteria get ill,” drug resistant tuberculosis, and WHO-promoted treatment models, Jens Seeberg showed how a TB treatment strategy can be a double-edged sword. While the Directly Observed Treatment – Short-course (DOTS) has improved treatment, it has stumbled when it comes to preventing drug resistance in both public and private healthcare systems.
The final themed panel on “Epidemics – communicability and non-communicability” turned the notion of contagion on its head. Non-communicable diseases like diabetes (Steve Ferzacca), obesity (Simon Cohn), and PTSD/Ghosts in Uganda (Lotte Meinert and Susan R. Whyte) and were examined as infectious and transmittable, challenging again the value of deterministic labeling and pondering new ways to understand illness and the body in the global health-scape. Moreover, the conference speakers emphasized that deterministic thinking reifies dominant logics and closes down the ability to imagine modes of intervention for potentially solvable problems.
A number of times throughout the meeting, organizers and presenters noted how indeterminacy had shaped both the logistical and topical elements of the meeting. Everyone involved in presenting and organizing was taken aback by the interest that the conference attracted; talks were transformed at the last minute into presentations. Similarly, there was sometimes uncertainty surrounding the connection between topics and conference themes, but this indeterminacy was perhaps what was most productive. It allowed for a time of collaboration and conceptual experimentation that demonstrated the import of the topic and the ability of the social sciences to influence the determinisms – social, biological, environmental – emerging within contemporary scientific and policy practice.
The list of abstracts for all of the fifteen presentations is available online at http://epicenter.au.dk/biodeterminism/abstracts/
Samuel Taylor-Alexander is currently a Visiting Scholar in the Department of Anthropology, University of Copenhagen. He wrote his PhD at the ANU and was a doctoral fellow in the STS program at Harvard University. Samuel is the author of On Face Transplantation: Life and Ethics in Experimental Biomedicine (Palgrave Macmillan 2014). His research seeks to understand how national imaginaries shape everyday and experimental medical practice.
Anthropology Goes Public in the VA — A special issue of the Annals of Anthropological Practice by Aaron Seaman
The current issue of the Annals of Anthropological Practice is a special issue, entitled, “Anthropology Goes Public in the VA.” Guest-edited by Karen Besterman-Dahan and Alison Hamilton, the issue contains seven articles organized thematically around discussions of what it means to be an anthropologist in the VA, the kinds of interventions anthropologists are making, and the often marginalized groups with whom they work. In addition, the issue has an introduction by Elisa J. Sobo and an afterword by Sarah S. Ono and Samantha L. Solimeo. Articles and abstracts are below. Enjoy!
Anthropologists in the VA: A Generative Force
Elisa J. Sobo
Practicing anthropology within the Veterans Health Administration of the Department of Veterans Affairs (VA) has, until recently, received little serious consideration as a respectable career option for anthropology postgraduates. But times are changing. Anthropologists employed by the VA are responsible for some of the most important and actionable anthropologically informed health research today. Far from being a marginal pursuit, VA anthropology is in fact a generative force for medical anthropology and, indeed, the discipline as a whole.
Practicing Anthropology in the VA
Observers Observed: Exploring the Practice of Anthropology in the VA
Megan B. McCullough, Bridget Hahm, and Sarah Ono
From our position as publicly funded anthropologists in the Veterans Affairs, we discuss how anthropological research on Veterans health care offers an opportunity to critically engage with ideas about what constitutes public anthropology. As public sector anthropologists, we are conducting theoretically and ethnographically innovative work. In this chapter, we discuss the implications of this work in regard to anthropological theory and practice.
The U.S. government is the largest employer of anthropologists, with an increasing presence in the Department of Veteran Affairs (VA). However, there has been limited discussion of the path from graduate school to an applied career. This article describes the motivations and trajectories of anthropologists employed by VA. Interviewees described their VA work as embodying the principles of anthropology and the ability to see the results of their work as deeply gratifying.
The Role of Social Networks for Veterans with Spinal Cord Injury in Obtaining Employment
Bridget A. Cotner, Jennie Keleher, Danielle R. O’Connor, John K. Trainor, and Lisa Ottomanelli
The purpose of this article is to demonstrate the use of ethnographic methods to explore the types of social support provided to Veterans with spinal cord injuries (SCIs) who are participating in an employment program. Interview data with Veterans and their social support members along with employment narratives written after a job was secured are used to document the types of support provided to Veterans with SCI to facilitate obtaining and maintaining employment. The impact of social support on mental and physical health is well documented in the literature; however, there is a need for research on the influence of social support on employment. As applied in VA spinal cord care, the “individual placement and support (IPS)” model of supported employment for vocational rehabilitation integrates vocational services into clinical treatment, and includes social support members in the pursuit of employment goals. Guided by theories of social capital, the types of social support provided to Veterans were classified into three types: instrumental, informational, and emotional. Analysis of data showed that for all Veterans with SCI, some form of social support was needed to aid in finding and maintaining employment, demonstrating the need for evidence-based supported employment (EBSE) services in the VA spinal cord system of care.
Evaluating Secure Messaging from the Veteran Perspective: Informing the Adoption and Sustained Use of a Patient-Driven Communication Platform
Jolie N. Haun, Jason D. Lind, Stephanie L. Shimada, and Steven R. Simon
Secure messaging (SM) is a secured asynchronous electronic e-mail system within the Veterans Health Administration web-based patient portal, My Health eVet. This electronic tool is part of a national transformation initiative to create new models of care to support patient-provider communication and promote self-care management. SM is designed to empower patients to communicate with their providers, but to date little research has evaluated Veterans’ perspectives on using SM as a communication tool. This article provides an overview of a qualitative mixed-methods study with 33 Veterans who opted-in to use SM. We used a combination of in-depth interviews, user-testing, three-month review of secondary SM data, and three-month follow-up phone interviews to understand Veterans’ experiences using SM. Synthesizing these data, we identified high- and low-volume users and characterized their reasons for using or not using SM. These profiles illustrate the Veteran perspective, enabling clinicians, administrators, and other stakeholders to understand how to adapt marketing and educational strategies and make system changes to promote and facilitate Veteran adoption and sustained use of SM as a communication tool.
As highly effective treatments for posttraumatic stress disorder (PTSD) become increasingly available, how will the VA (Department of Veterans Affairs) and other public institutions navigate complex questions around appropriate services for Veterans with PTSD? This and related questions will be examined in this article in light of epidemiological, clinical, and ethnographic data on combat PTSD in the 21st century.
Working with Veterans at the Margins
Gendered Social Roots of Homelessness among Women Veterans
Alison B. Hamilton, Donna L. Washington, and Jessica L. Zuchowski
Homelessness is one of the most challenging issues facing U.S. Veterans and those who serve Veterans. While the overall number of homeless Veterans is declining, the number of homeless women Veterans is increasing, with little clarity as to why. In previous work, we have examined pathways to homelessness among women Veterans, with a focus on proximal pathways, that is, how women perceived themselves to have become homeless at the time of the study. In this paper, we dig deeper into the roots of homelessness, specifically into the social institutional roots of homelessness. We examine women’s focus group conversations about entering and experiencing the military, particularly with regard to the common occurrence of sexual violence and trauma before and during military service. Drawing on anthropological concepts, we conceptualize trauma at both an individual level as embodied in women’s lived experiences, as well as at a collective, gendered level. Gendered traumatic experiences can accumulate over time, creating or reinforcing vulnerable pathways. For women Veterans, gender and the military are both social institutions that may act in combination to create gendered social roots of homelessness that are particular to women, and that may be relevant to the gender difference in prevalence of homelessness among Veterans.
“You Never Heard Jesus Say To Make Sure You Take Time Out for Yourself”: Military Chaplains and the Stigma of Mental Illness
Karen Besterman-Dahan, Jason D. Lind, and Theresa Crocker
The wars in Iraq and Afghanistan have taken a toll on military chaplains (MCs) who often return from deployment with high levels of stress, yet are expected to counsel on a daily basis without decompression of their own, potentially exacerbating any personal trauma. MC with posttraumatic stress disorder (PTSD) who have had deployments abridged due to their positive PTSD screen have reported shame due to leaving service members in their unit in danger while they went to safety. Many MCs report compassion fatigue, PTSD, reintegration issues, and adverse effects to their personal energy, motivation, and mental and spiritual well-being postdeployment, related to stressors from deployment and combat exposure. Only 23–40 percent of Operation Enduring Freedom/Operation Iraqi Freedom/Operation New Dawn (OEF/OIF/OND) service members with a psychiatric disorder seek mental health care, citing stigma as a primary barrier. For MCs, stigma is compounded by a culture in which military health care providers, including MCs, are encouraged to deny their own needs to provide the necessary support to beneficiaries. This paper reviews a pilot study, which explored the impact of operational stress on the psychosocial health and reintegration of MCs, focusing on findings related to mental health and stigma within the military chaplaincy.
Negotiating Domains of Patient Dignity in VA Spinal Cord Injury Units: Perspectives from Interdisciplinary Care Teams and Veterans
Jason D. Lind, Gail Powell-Cope, Margeaux A. Chavez, Marsha Fraser, and Jeffrey Harrow
Patient dignity is a significant concern among inpatient Veterans with spinal cord injuries (SCIs) because they may lack physical control over their bodies and thus rely on others for a variety of specialized needs, including mobility, personal care, wound care, bowel and bladder care, and rehabilitation, among others. This study examines the complexities of providing and negotiating dignified care in the context of interdisciplinary care teams in SCI, and the challenges Veterans with SCI face maintaining dignity in the context of limited independence. Based on a mixed methods approach that included in-depth interviews, observations, and pile sorting at six Veterans Health Administration (VA) SCI units, the goal of this study was to explore ways in which dignity was defined, negotiated, and conferred during patient and provider interactions. Study results have immediate value to VA leadership, VA providers, and Veterans by calling attention to the ways in which the concept of patient dignity can be integrated into clinical practice on SCI units. This study provides a methodological framework to capture complex interactions among interdisciplinary care teams and patients, and offers a significant contribution to our understanding of how patient and provider interactions are conferred and negotiated.
The Intersections of Gender and Power in Women Veterans’ Experiences of Substance Use and VA Care
Ann M. Cheney, Audrey Dunn, Brenda M. Booth, Libby Frith, and Geoffrey M. Curran
In this article, we show that the Veterans Health Administration (VA), similar to military organizations, is a gendered organization where women Veterans’ experiences are embedded in and shaped by gender inequalities and structures of power. Based on an in-depth analysis of women Veterans’ substance use histories and VA treatment seeking experiences, we illustrate how gender power dynamics are (re)produced and maintained through everyday social interactions and organizational practices and processes that render women Veterans both visible and invisible: visible as sexual objects and invisible as suffering subjects. By retelling the illness and treatment experiences of women Veterans with trauma histories and co-occurring substance use and mental health disorders—a highly stigmatized population of Veterans—we highlight the importance of giving voice to their concerns when developing policies and programs to address the unique health care needs of women Veterans.
Afterword: Public Sector Anthropologists and New Directions for a Public Anthropology
Sarah S. Ono and Samantha L. Solimeo
In this final contribution in the edited volume on anthropologists working in the Veterans Health Administration within the Department of Veterans Affairs (VA), the authors reflect on how developments in recent years have brought us to this moment in time from the “insider” perspective of VA anthropologists. These collected papers provide ethnographic evidence for the innovative ways in which anthropologists employed in the public sector constitute a public anthropology that is theoretically informed, actionable, and cognizant of its role in the production of authoritative knowledge. The “afterword” makes connections between the chapters, with their varied topics, and addresses how this volume points to new destinations for engaged and ethical research in the growing field of public sector anthropology.
Princeton University Press, 2011. 368 pp.
What is the role of cultural analysis in confronting genetic phenomena? Over the past few decades, cultural anthropologists have striven to contest or hold at bay genetic explanations for race, gender, and sexuality. Their analytical approach was to demonstrate the social construction of genetic facts. Often, these contests rehearsed battles that marked the emergence of social analysis, as when Emile Durkheim made the case for the autonomy of social facts by delineating them from biological or psychological dynamics. This stance was strongly reasserted by Marshall Sahlins when, in response to the rise of sociobiology in the 1970s, he maintained the irreducibility of “a social construction of meaning” to “biological determinism,” (1976: 4) To insist otherwise, he concluded, would result in having “to abandon all understanding of the human world as meaningfully constituted, and so the one best hope of knowing ourselves” (1976: 107). When discussing race, “ideology” was deployed as a counter attack; the insistence on race’s social construction entailed assailing the objectivity of genetic facts, rendering them as largely the products of racial ideologies that informed the work of scientists. But all this eventually became more complicated, first as “biosociality,” via Paul Rabinow (1996), inverted “sociobiology” in calling attention to how cultural identities are formulated in response to medical conditions, and then as claims linked to the Human Genome Project (e.g., “the concept of race has no genetic or scientific basis,” Craig Venter, 2000) generated an array of challenges from certain geneticists.
Duana Fullwiley’s The Enculturated Gene offers several formulations of how cultural analysis frames genetic matters. Some of these will be familiar to readers trained in anthropology over the past two decades, but at least one of these formulations heralds a potentially dramatic challenge to the delineation of distinct domains that first allowed the social fact to be established. The work’s strength lies in its framing the cultural alongside the genetic without reducing the latter to merely a construct. But it is a struggle to maintain this view, which requires Fullwiley to make a variety of efforts to formulate the analytical ground and objects. The genotypic form in question is the sickle cell allele, “a misspelling in the genetic sequence that codes for the beta chain of hemoglobin” (280). Ethnographically, she presents us with doctors, patients, and researchers in Senegal from 1998, when she commenced her fieldwork, to a final research trip in 2010. During that time, sickle cell shifts from being largely ignored by the government, construed as a genetically distinct “mild form,” to becoming characterized as “severe” and made the focus of more concentrated state public health concern. During that trajectory, the responses of sufferers and their caregivers develop: “In other words, actors affected by the disease (as well as scientists who study it) have both built and lived an ontological reality of mild sickle cell, as a well as the possibility of its double” (266). This can be a matter of contesting norms for healthy conditions or even affecting the expression of the disease through ingesting leaves from the medicinal plant, Fagara xanthoxyloïdes, which may play a role in making “sickle cell mild in the first place” (78). The variable responses to a disease have long been a comfortable domain for framing and asserting the relevance of culture to genetics and biology. The bolder set of claims about the role of culture—suggested in the book’s title—seemingly has to vie against these formulations in order to come fully into view.
Predominantly, Fullwiley analyzes the work of culture in two broad, familiar registers: as shaping researchers’ views of the disease, particularly in relation to race, and in peoples’ capacities to live with sickle cell. These two are in ongoing dialogue, and both may be construed as constructs: “Senegalese sickle cell anemia” (7) was produced by French doctors retracing colonial imaginaries via an enduring commitment to finding race naturally inscribed in bodies and territories; as such, “its discursive effects helped to shape people’s intersubjective modes of self-care and self-governance,” thus constituting a culturally “lived experience with the disease” (7-8). This book is primarily an ethnography of the latter: “Almost daily I witnessed people go back and forth between frustration and hope in managing their disease, and more specifically in garnering the necessary resources to live relatively normal lives” (11). Fullwiley documents how “people with the disease…deploy multiple representational strategies that both blended and held separate ideas” (27), something that culture has long worked well to frame and explain.
But what of the disease “itself” or life “itself”? These both gesture toward the genetic and biological aspects of “the construct of mildness,” “born both of geneticists’ ideas about Senegalese biological capacities…and of patients’ informal economies,” “improvisational yet effective” (xx). Initially, this domain is merely refractive for culture: an “ethnographic engagement with sickle cell in Senegal provides an aperture on the social forces that condition disease embodiment, but that also highlight the possibilities for how power shapes people’s subjectivities across the North-South divide” (xxii). The social is glimpsed through the genetic. But her framing of “ideas of difference that cohere through people’s imaginaries about belonging”—stock concerns of cultural anthropology—is quickly followed by an acknowledgement “that biogenetic differences exist” (xviii). The latter, Fullwiley knows, must factor into this account. But when the focus falls on such form of difference, it’s easy to lose sight of culture altogether: “in conceding that health outcomes may be linked to some aspect of genetic variation exhibited between people classed within ethnic and national lines, we must also ask what is lost when we focus on small, highlighted gene differences that are in no way generalizable to the majority of sicklers in these nationally named cohorts” (17).
In response to this loss of focus, sometimes Fullwiley argues for a modest role for culture, imagining how claims-making would shift “if an analysis of sickle cell biological difference in West Africa took seriously the concerted efforts and cultural practices the sickle cell patients themselves have put into surviving in the face of economic scarcity” (xviii). Yet in this moderate stance she contends with the tendency of genetics to block culture from view entirely: “genetic framings often mask the historical and cultural experiences that may lead to a given health outcome (19).” At times, this feels like a zero-sum game: seeing the cultural depends upon bracketing off the genetic, because of the capacity of the genetic, conversely, to block culture out entirely. Patterning at one level precludes an attention to patterning at another level. In writing to “guarantee that affective underpinnings of health outcomes, constellations of poverty, and material inequality are not blotted out for good in our thinking about biological causation” (20), Fullwiley expresses the desire “to get us beyond these modes of query,” which entails “moving past an emphasis on filling quantitative gaps in genetic knowledge” in order “to begin to ask how human biological differences get parsed in the first place,” (18). In such moments, culture displaces an attention to genetics rather than analytically holding both in the frame simultaneously.
Momentarily, she settles on this formulation: “Although the Senegal haplotype (like the ‘Arab-Indian’ haplotype) is ‘strongly associated’ with a high expression of persistent gamma globin (a constituent element of fetal hemoglobin) into adulthood, the causal link between the two remains an open area of research” (15). Here culture becomes a catchall, hinting at additional factors (political, economic, environmental) that make this link irreducible to genetics alone. Then Fullwiley makes another gambit, one that will be familiar to medical anthropologists, positing a perspective in which a genetic condition is neither universal nor uniform: “The larger point to be made here, of course, is that there is no singular disease called sickle cell anemia in the world today” (13). Yes, certainly, but in this case as in most, diseases do cluster; they involve patterns, at the genetic and cultural/social level.
So Fullwiley specifies further: “At most there are near universal terms of disease entities that are nonetheless made and enacted differently in different places through people’s diverse historical engagements with pathology, concepts of human distinction, global standing, economic well- being, and social structures as basic as kin ties that allow one to get by” (13). Here, culture is just a compilation of differences in a non-biological register; some are more consequential (historical, political) than others, but none have much direct impact on the genetic. Framed as a construct, we get the following: “a putatively ‘simple,’ ‘single gene disorder’ becomes infinitesimally layered when analyzed as a lived cultural construct,” and then all disease is “more than their genes” (20). Is this what cultural anthropologists have to say to geneticists and to our respective audiences? That it’s all a matter of infinitesimal layers of unique differences? What does culture amount to, and what does cultural analysis add besides a string of modifiers to remind researchers of the complexity and contingency of their subjects? Here it seems to serve principally as a reminder to practitioners who perhaps don’t know or forget or are literally unable to see these social dimensions. After all, this has been the challenge of social analysis since its inception—to get people to see forces that are as “invisible” as the air we depend upon and breathe.
But the book’s title suggests something more: “enculturation” as a fused set of frames, whereby culture shapes the genetic—perhaps just its expression, but maybe more profoundly, as well. This asserts a greater role for the work of culture than is typically evident in constructionist arguments. “It is in this mix of life and lived experiences that the Senegalese population variant of sickle cell has been made to correspond to a social context where people find ways to live better than expected. In this process the gene itself has become enculturated” (20). Fullwiley pulls back a bit at this moment and offers instead: “enculturation, as the vital adaptation techniques that social groups fashion for themselves, involves making sense of and living with specific referent objects,” (20). Rather than transforming the genetic, it seems we’re back to Sahlins and meaning. But another elaboration follows:
“The referent in this case is the sickle hemoglobin genetic sequence, which becomes enculturated as both patients and biomedical practitioners engage its supposed dictate of fate and subsequent constraints on (or chances for) living a normal life” (20).
Fullwiley’s formulation here attends to the constraints and potential of human plasticity, with the genetic as marking a limit point to what can be fully plastic and the cultural as the domain that acts in focused ways on that plasticity. How these relations are transformed over the long term is the subject of topics such as domestication, on one hand, and evolution on the other. The line between is hardly absolute: culture shapes genomes, but (channeling and paraphrasing Marx) not entirely as we please, always “under circumstances existing already, given and transmitted from the past,” and with a reminder that “the tradition of all dead generations weighs like a nightmare on the brains of the living” (1852). This is not yet the domestication of genes in everyday life, but we can glimpse it from here.
Consider the following passage, as an opening emerges here for agency of the gene:
“When the sickle cell gene in Senegal mediates social relations that range from postcolonial engagements about science equity to public health funding set by North- South donor priorities, when patients conjure healing strategies that range from silencing pain to an emphasis on normalcy at all costs, when the bounty of biomedicine merely consists of folic acid, painkillers, simple surveillance, and the doctor’s touch, and when Senegalese traditional plants are believed to curb sickle cell crises, and perhaps incite the biological production of fetal hemoglobin, people absorb these points of social fact, in body, society, and mind, and express an illness result in the process. This is sociosomatic genetics, and it is made possible when people enculturate sickle cell’s effects through soma and psyche in a societal context, in this case, of material scarcity,” (21).
In this fascinating rendition, Fullwiley draws the gene into view and frames certain biological processes but then returns us principally to its “effects” or expression. She construes this as a “dissolution of the nature/culture split” (21), which matters for constructivist arguments more than addressing geneticists. But more fundamentally, it is a challenge to the division between “artificial” and “natural” versions of selection by which we understand evolution. We know culture shapes genomes (Laland et al., 2010). But generally this is a matter of deep-time; can this knowledge be borne out or embellished via ethnography? Would it be at the risk of reintroducing evolution into cultural accounts?
Evolution is an anxious matter for social analysis, which, since its inception, has largely aimed to bracket off evolutionary explanations as inherently biologically reductivist and inevitably simply reiterating Social Darwinism. Nicholas Wade’s recent book, A Troublesome Inheritance, which has generated heated commentary regarding its claims about race, is as much animated by a critical assertion that social scientists, in regarding modern humans, believe evolution stopped a long time and no longer pertains. Whether this assertion is mostly a caricature or fairly accurate, I’m not sure. But it does help frame the challenge of Fullwiley’s enculturation argument—in opening up the genetic this way we no longer can keep evolutionary frames at bay, construing them simply as ideological representations or relevant only to nonhumans. We are going to need new ways to think about plasticity and fixity—“culture and nature” just won’t do. Perhaps the greatest value of Fullwiley’s ethnography is articulating this: “At stake is our willingness and, in some sense, disciplinary ability, to see that cultural practices and genetic effects are attached before birth” (19).
John Hartigan is Professor of Anthropology and Director of the Américo Paredes Center for Cultural Studies at the University of Texas, Austin. His recent books include Anthropology of Race: Biology, Genes, and Culture, (School of Advanced Research Press, 2013), What Can You Say? America’s National Conversation on Race (Stanford University Press 2010) and Race in the 21st Century: Ethnographic Approaches, (Oxford University Press 2010). His current project is Aesop’s Anthropology: A Multispecies Approach, at https://twitter.com/aesopsanthro and http://www.aesopsanthropology.com/blog/
Emile Durkheim, 1982  Rules of Sociological Method, The Free Press,
Kevin N. Laland, John Odling-Smee, and Sean Myles. 2010. “How Culture Shaped the Human Genome: Bringing Genetics and the Human Sciences Together.” Nature Reviews Genetics 11 (2): 137–48.
Karl Marx, 1852 The Eighteenth Brumaire of Louis Bonaparte.
Paul Rabinow. 1996. Artificiality and enlightenment: from sociobiology to biosociality. In Essays on the Anthropology of Reason. Princeton University Press. (pp. 91–111).
Marshall Sahlins, The Use and Abuse of Biology, University of Michigan Press, 1976.
As someone who thinks and works on the edges of the social sciences I am always curious about—and fascinated by—the ways in which ideas, feelings, propositions, demands, and attachments of various kinds have dynamically contributed and continue to contribute to articulating both the knowledge-practices of social scientific disciplines and the habits or ethical sensibilities that inform those forms of inquiry as well as their dreams, hopes, and fears. This is not to rehearse again the old dictum that it is merely ideas that make the world go round. Oftentimes, if not always, ideas emerge from unexpected, material encounters that force one to think something (a)new. But it seems nevertheless true, at least to me, that while the world is not made solely of ideas, it does partake in what, after philosopher Alfred North Whitehead (1967), we might refer to as its own adventure of ideas.
The idea of ‘relevance’ has recently become almost ubiquitous in the ways in which the knowledge-practices of the social sciences are articulated, justified, funded, judged, criticised, and experienced. That the practices of such sciences must ‘be’ or ‘become’ relevant seems to have become a demand that is extremely hard to resist. And who would want to resist it? Who would want to suggest that the activity to which one dedicates one’s best efforts is irrelevant or that its relevance should not be a matter of concern? Yet, at the same time, there is often a sceptical tone that lies at the center of the various demands for relevance. One that, by posing the very question ‘how is this relevant?’, suspects that in fact the practices of the social sciences might, and likely do, fall short of convincing responses. Indeed, demands for relevance have materialised in a myriad of forms: in rather ‘apocalyptic’ texts about ‘the end’ of the social sciences and of universities more generally; in calls for ‘public engagement’, ‘impact’, ‘interdisciplinarity’, ‘self-auditing’, and ‘scientific accountability’; in public and policy debates around how funding should be allocated; in purportedly ‘emancipatory’ calls emerging within the social sciences that demand that ‘wider public issues’ be addressed; and many more.
Fuelling the recent sense that, yet again, the future of the social sciences is far from guaranteed, such a series of demands has become so widely disseminated and pressing, so much a part of daily scientific activities, that it has failed to give rise to more profound reflections as to what ‘relevance’ might mean. As soon as the question ‘what does it mean for something to be relevant?’ is posed, however, all those multiple demands begin to appear under a different light. On the one hand, demands for relevance emerge in the context of a proposed reformation of the institutional and intellectual organisation of scientific activity that might foster more interdisciplinarity and greater accountability for scientific and technological innovation by becoming ‘embedded’ throughout research and development programmes, thereby better contributing to and informing policy and innovation (e.g. Felt 2014, Levidow & Neubauer 2014, Gibbons et al. 1994, Mayer et al. 2013, Nowotny et al. 2001, Rappert 1999). Thus, the 2013 Vinilus Declaration on the 2020 Horizons of the Social Sciences and Humanities in Europe states:
Making use of the wide range of knowledge, capabilities, skills and experiences readily available in SSH [Social Sciences and Humanities] will enable innovation to become embedded in society and is necessary to realise the policy aims predefined in the ‘Societal Challenges’. (Vinilus Declaration 2013)
On the other hand, calls for a more relevant social science emerge from a number of heterogeneous positions that see the latter as already complicit in forms of neoliberal governance and hence detached from wider moral and political public concerns (e.g. Burawoy, 2005, Evans 2005). In any case, questions about the extent to which the contemporary social sciences are ‘relevant’ are pervasive in the field.
Despite the aforementioned demands, it is somewhat puzzling that almost none of them emerges from any in-depth exploration of what ‘relevance’ entails, what place it occupies in the worlds that the social sciences encounter, which modes of inquiry it might require, and what kinds of habits of thought and feeling its understanding might help cultivate. ‘Relevance’ has become so ubiquitous and multifarious a demand, it has become such a ‘tyranny’—as political scientist Matthew Flinders (2013) has recently put it—that it has failed to raise any substantial, theoretical reflection on what it itself might involve. Enforced by some and dismissed by others, the notion of ‘relevance’ has become something of an empty placeholder that heralds an ideal solution to general, anonymous, and pre-existing problems. A solution whose conditions of success are said to be definable in advance, thus turning ‘relevance’ into an abstract criterion of demarcation (Fraser 2009).
That this be the case, however, is no reason to dismiss the concept. Quite to the contrary, in my view, it is an opportunity to wonder about what ‘relevance’ might come to entail while, at the same time, attempting to produce a response that may allow us to resist the tyranny that often becomes associated with its demands and to speculate about what a social science that would take the question of relevance seriously could look like. The task, then, is to take relevance seriously while not immediately complying with what the demands that are posed in its name seem to assume about it.
Indeed, the idea that ‘relevance’ constitutes a solution to a pre-existing problem (whatever the problem might be) is common to most if not all of these demands as well as to some theories that use the concept in the information sciences. Relevance appears as a value that is added to the knowledges produced by the social sciences and whose conditions of success depend upon a process of recognition performed by a public. Interestingly, such a characterisation finds some support in one of the very few theories of relevance produced within the social sciences—namely, Alfred Schutz’s (1970) phenomenological theory, which proposes that relevance be conceived as the process whereby an individual consciousness encounters an unfamiliar object within an otherwise familiar surrounding and deploys efforts to interpret it. According to Schutz, this act of interpretation, combined with the subject’s own motivations, will transform the subject’s phenomenal field and future behaviour. Now, while there might be some psychological value in such an account, to reduce the question of relevance to a theory of subjective responses is, to my mind, deeply problematic.
Such an assumption forgets something crucial—namely, that the very emergence of a ‘response’ depends upon a situation posing a perplexing question. In other words, we cannot solve the perplexity induced by the problem of how things become relevant by saying that there is a subject recognising them as such. For the very experience of worth that allows something to be characterised as relevant involves a sense that there is value beyond ourselves, that something that is not ourselves matters. Thus, to include in our interrogation of the concept of relevance the perplexing questions that may elicit responses of diverse kinds is to cease thinking of relevance as a subjective appreciation of an otherwise irrelevant problem, and to restore to it its character as an event that belongs to the world. In other words, I want to entertain the proposition that relevance is not a value that the social sciences, or their publics, ‘add’ to the knowledges the former produce, but that it already inheres, as an event and as a problem to be developed, in the situations into which they inquire. In order to entertain this second understanding of relevance I propose we begin from a simpler and more self-evident expression, one that may allow us to turn the ‘tyranny’ that is often associated with the concept of relevance into a productive constraint upon social inquiry. This is the expression that things matter.
This is at once an obvious and potentially powerful proposition. However, it is also one that our habits of thought, which have taught us to distrust our direct experiences, make surprisingly difficult to grasp. We should therefore tread carefully. In this sense, the riddling character of the verb ‘to matter’ might prove instructive. To say that things matter contains a double proposition, just like the verb ‘to matter’ conveys two senses. The key is to conjoin the two senses and propositions into one. On one pole, things matters as they materialise—they come into and remain temporarily in existence, they acquire a certain stubbornness. On the other, and at the same time and by the very same process, they matter as they become relevant to some degree and in some manner. The point is that there is not one sense of mattering without the other. Indeed, to the extent that something comes into existence, its coming in(to) matter is always specific and situated, and it is that situated specificity which makes the thing what it is—even if only momentarily—and which makes it matter. Minimally, then, everything that has a determinate existence (this human, this table, this keyboard, this idea, this feeling) has some relevance by virtue of being what it is—it matters that this thing is what it is, and that it is not something else. Indeed, as philosopher Tristan Garcia (2014) has recently argued, only a generic, indeterminate ‘anything’ is what does not matter—anything is ‘no-matter-what’. Namely, it does not matter what it is.
In other words, facts exist to the extent that they come (in)to matter in specific situations, and they matter insofar as they come into existence. In this way, relevance might be said to belong to what Whitehead (1968) described as the primary experience—it should be noted, not necessarily a ‘psychological’, ‘subjective’ or even ‘human’ experience—of the actual world. Namely, a value experience whose expression is none other than ‘Have a care, here is something that matters’ (1968: 116). As he argues (1968: 111):
Existence, in its own nature, is the upholding of value intensity. Also no unit can separate itself from the others, and from the whole. And yet each unit exists in its own right. It upholds a value intensity for itself, and this involves sharing value intensity with the universe. Everything that exists has two sides, namely, its individual self and its signification in the universe.
In this way, something comes (in)to matter for itself, for other things with which it composes a situation, and for the world of things to which it becomes added. It is to this event of a coming (in)to matter, and to the problem it poses to those with whom it is concerned, that I want to associate the question of relevance.
Important implications follow from the seemingly obvious suggestion that things matter. The first implication is that the relevance of things is not something that is added to them by reason of a subjective process of recognition of worth. In contrast, relevance belongs to the world—it inheres in the nature of things. Second, if everything that exists matters in some degree and in some manner, then, conversely, everything that matters has some mode and degree of existence, even if this mode is not entirely ‘material’ or physical. This means that we should not confuse this proposition with what in recent years we have come to refer to as the ‘new materialisms‘. Not because they’re ‘wrong’, but because, in this context, such a name might be misleading—matter matters, most certainly, but so does everything that exists, somewhere, in some way or another; ideas matter, ghosts matter, words matter, feelings matter.
Third, because the coming (in)to matter of things is always situated and specific, ‘there is no such thing a bare value’ (Whitehead 1926: 90); that is, there are no pure, general, universal, values. Values too are only specific, arising within the many situations in and for which things matter in different degrees and manners. In this way, the idea of relevance cannot become a general criterion that could demarcate what matters from what doesn’t, but needs to be approached as a question for wondering about how, to what degree, and in what manner, things come (in)to matter within specific situations.
To suggest that things matter is, then, to resist the longstanding bifurcation between fact and value, a side of a many-headed monster that Whitehead (2004) famously named ‘the bifurcation of nature‘. As is well known, the bifurcation of nature consists in separating the world into two realms of reality. As Whitehead (2004: 30) phrases it, one side of this bifurcation would be ‘the nature apprehended in awareness’. The other, ‘the nature which is the cause of awareness’:
The nature which is the fact apprehended in awareness holds within it the greenness of the trees, the song of the birds, the warmth of the sun, the hardness of the chairs, and the feel of the velvet. The nature which is the cause of awareness is the conjectured system of molecules and electrons which so affects the mind as to produce the awareness of apparent nature.
We can see such a bifurcation at work in many demands for relevance: on the one hand there are the “true” and “objective”, bare facts that science discovers; on the other, there is the relevance of those facts from the public’s point of view. That contemporary demands for relevance place truth and objectivity on the first side of reality is, to be sure, no surprise. Since the inauguration of modern science, the bifurcation of nature has been key to define the ‘value-neutrality’, ‘objectivity’, and ‘truth’ of scientific knowledge.
To suggest that facts matter, then, is a way of resisting this bifurcation. It is however certainly neither the first nor the only form of resistance; it is probably not the last one either. Another prominent attempt at resisting the distinction between fact and value is, for example, Bruno Latour’s call to move from the anonymous and supposedly pure ‘matters of fact‘ of modern epistemology, to always controversial and hybrid ‘matters of concern’ or ‘things’, as he calls them after Heidegger. Latour’s (2004a: 246. emphasis in original) call was an attempt to simultaneously draw social scientists’ attention to the liveliness of objects and to draw scientists’ attention to their sociality, thereby simultaneously multiplying and distributing the many heterogeneous agencies that labour towards the making of things:
what is presented here is […] a multifarious inquiry launched with the tools of anthropology, philosophy, metaphysics, history, sociology to detect how many participants are gathered in a thing to make it exist and to maintain its existence.
While I am appreciative of Latour’s project and of his notion of “matters of concern” as a way of anchoring a different kind of social study of science, his project differs considerably from mine and, consequently, so does his way of resisting the modern distinction between facts and values.
Indeed, by inquiring into the question of relevance in contemporary social science, I am not calling anthropologists, philosophers, metaphysicians, historians, sociologists, political scientists, or psychologists to delve in to the making of ‘things’. Things matter not just because many other things converge in their making, but quite simply because their coming into existence makes a difference to the worlds they help compose—they come into matter, and they matter to them. Thus, what concerns me is the exploration of what might be required—intellectually, ethically, and politically—for social scientific practices to take up ‘relevance’ as a question of the situated patterns that organise and relate humans, other-than-humans, ideas, feelings, and so on in ways that matter for those with which a problematic situation might be concerned. What I am interested in is not so much a different job description for social inquiry, but the possibility of a different ethos of social inquiry that would seek to negotiate the question ‘how is it, here, that things matter?’, without imposing on the ‘thing’ either a specific nature or a number in advance, and without singlehandedly delimiting the horizon that defines where ‘here’ ends.
As a taster of what is a much longer project, I will just say that the key to this question is that any possible answer be negotiated in practice. Whenever a social scientist encounters a problematic situation as an object of inquiry, it is not simply her practice that makes that situation ‘matter’. Rather, the situation is already constituted by an ecology of dynamic and fragile patterns of relevance, heterogeneous objects and relations, to which her questions, her assumptions, theories, and methods, in sum, her mode of knowledge-production become added. Such an addition, to be sure, is never innocent, that is, it has effects—it affects the ecology of such patterns in different ways. Thus, the point is that ‘negotiation‘ means neither that it is her questions or methods themselves that, as it were, produce that ecology out of thin air, nor that her goal is that of discovering the relevant way of defining the problem that characterises the situation as if such a way could be said to fully preexist the questions themselves. By contrasts, problems are always a matter of ‘invention’—a notion that, in my reading, conjoins discovery and creativity. Isabelle Stengers (1997: 6) expresses the nature of a negotiation of relevance with notable clarity in the case of experimental sciences when she argues:
What is noteworthy about ‘relevance’ is that it designates a relational problem. One speaks of a relevant question when it stops thought from turning in circles and concentrates the attention on the singularity of an object or situation. Although relevance is central to the effective practices of the experimental sciences, in their public version it often boils down to objective truth or arbitrary decision: to objective truth when the question is justified by the object in itself, and to arbitrary decision when it refers to the use of an instrument or experimental apparatus whose choice is not otherwise commented on. In the first case, the response appears to be “dictated” by reality. In the second, it appears to be imposed by the all-powerful categories of which the investigative instrument is bearer. Relevance designates, on the contrary, a subject that is neither absent nor all-powerful.
Thus, the question of relevance is one which affects the modes by which social scientific practices interrogate and negotiate how things come (in)to matter—it is a question that makes social scientific inquiry into a risky process. In this way, relevance should be understood as a problem that affects the very situated exchanges that make every answer dependent upon the question that calls for it, and every solution to a problem dependent on, or deserving of, the manner in which the problem is defined (Deleuze 1994). For every definition of a problem guiding inquiry and every question that may point to an unknown that a scientific practice of knowledge-making may seek to address also produces a pattern of contrasts that productively constrains the range of possible answers that might matter to it.
Nothing guarantees, however, that the pattern of contrasts will address the object in a manner that matters to it, her, or him. If relevance is to become capable of affecting the manner of directing practical inquiries in the social sciences, of feathering the arrow of questions in a way that matters for those to whom the questions are posed, then the term cannot designate, ex post, or worse, ex ante, the effect that a knowledge-product has in relation to the public to which it may be communicated. Relevance needs to be thought as an active constraint upon practice—a constraint that forces social scientists to put the pattern of contrast that a question generates, that is, the assumptions that underpin it, at risk.
Martin Savransky is currently Teaching Fellow in Sociology of Science and Technology at the Department of Science and Technology Studies, University College London, and Researcher at the Department of Sociology, Goldsmiths, University of London. Prior to this he was Whitehead Scholar at the Centre for the Study of Invention and Social Process (Goldsmiths). He works at the interdisciplinary intersection of process philosophy, STS, and the philosophy of social science, with a focus on the ethics and politics of inquiry of the contemporary social sciences and the humanities. He is currently preparing a monograph, based on his doctoral research, on relevance and a speculative ethics of inquiry for the social sciences.
This is a slightly revised version of a talk delivered in Barcelona in July 2014, organised by the STS-b group at the Open University of Catalonia (I especially want to thank Daniel López, Israel Rodríguez-Giralt, Tomás Sánchez Criado and Manuel Tironi for their responses to the paper). The text has been mostly left as originally presented, and therefore reflects an oral style of presentation, with no ambition of peer-reviewed accuracy. As such, it constitutes no more than a snippet of a book-length research on the development of a new ethics of inquiry for the contemporary social sciences oriented by the question of relevance.
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For this installment of the Top of the heap we spoke to Warwick Anderson, Professor at the Department of History and Centre for Values, Ethics and the Law in Medicine at the University of Sydney, and an Australian Research Council Laureate Fellow.
Having written provocatively—and somewhat irritatingly, it seems—on the impossible history of global health already this year, perhaps I should wait till the dust settles before broaching the topic again. But in a time of Ebola, that obscure object called global health demands further critical attention. We need to know what to expect from global health in the current emergency. Accordingly, over the past few weeks I’ve set about reading, and reading again, some recent books that might come under the rubric of global health history. In general, I’ve found that the most compelling accounts of global health manage to localize medical interventions: they examine the messy and often confusing, even conflicted, interactions of foreign doctors and aid-workers, domestic and traditional health practitioners, and their patients. No surprise, then, that historically sensitive anthropologists, rather than medical historians, have written many of the more plausible of these situated narratives. An ethnographic sensibility appears to be a requirement for understanding global health—for explaining its past as well as contemporary forms. I’m also struck by the prevalence of “crisis” in the discourse of global health, whether in reference to humanitarian crises or biosecurity crises. Thus the acute timescale of global health (which often proves more rhetorical than practical) seems distinct from the chronicity of late-colonial medicine, and other programs of development and modernization—indeed, from normal public health. Perhaps those who are anthropologically minded can deal better with “crisis talk” than most historians.
If recent case studies are a reliable guide, then Africa has emerged as a sort of laboratory for global health. In the late-nineteenth century, Henry M. Stanley (1878) described his journeys through the “dark continent”; but in the 1980s, Africa became known as the “sick continent”—Gwyn Prins in 1989 must have been among the first scholars to use the term. The obvious prompt was the HIV/AIDS epidemic ravaging African societies. All the books I’ve read over the past few weeks imply that global AIDS became the major incitement to global health—and Africa was regarded as the seedbed and prime grounding for AIDS. Of course, a few telling supplements to the African global health story are now emerging to complicate it, especially studies like Elizabeth F.S. Roberts’ God’s Laboratory (2012), located in Ecuador, and Alice Street’s forthcoming Biomedicine in an Unstable Place (2014), set in Papua New Guinea. One might even re-interpret Paul Farmer’s early work on Haiti as providing an alternative Caribbean story for global health. But Africa evidently is global health’s hot zone.
In just a few years, Julie Livingston’s Improvising Medicine (2012) has become a classic among studies of global health. As most readers of Somatosphere are aware, Livingston, trained as a historian, describes movingly the conditions of life and death on Botswana’s sole dedicated cancer ward—the chapter on the moral intimacies of nursing care is stunning. Writing in the aftermath of AIDS, she uses ethnography to complicate facile diffusionist or triumphalist accounts of global health: this is not, she tells us, one of those “tales of redemption via biomedicine that make up the fantasies of global health” (p. x). And yet, she concludes, the cancer ward is nonetheless “an instantiation of global health” (p. 181), perhaps in the very failure of its sovereign claims. For me, however, Livingston’s interruptions to address North American and European readers, to appeal to their sensitivities, mar this excellent evocation of global health’s decomposition in Africa. Despite this redolence of Margaret Mead, Improvising Medicine brilliantly shows us how ethnography can contribute to the postcolonial critique of the ambitions –and hubris- of global health. It therefore sits on my bookshelf next to Clare Wendland’s A Heart for the Work (2010), that revealing ethnography of a Malawian medical school.
Stacey A. Langwick in Bodies, Politics, and African Healing (2011) engages with the “postcolonial ontological politics” of medical experts and their patients in Tanzania. Her study of the interaction of traditional and modern medicine makes visible a range of new entities, from “enchanted parasites” to “biomedical devils” (p. 7). Drawing artfully on postcolonial science studies, Langwick demonstrates the continuing colonial shaping of hybrid healing practices in East Africa, thereby complicating and challenging notions of global health. The word “colonial” appears in this book far more frequently than “global.” In Scrambling for Africa (2013), Johanna Tayloe Crane takes even further the postcolonial critique of the supposedly laminar flows of global health. In this extraordinary transnational ethnography of Ugandan AIDS clinics and medical laboratories in San Francisco and Seattle, Crane shows how global health programs extract value from neocolonial structural inequalities. Disease-centered global health projects can displace and thus cripple local public health systems. North American universities divide up Africa as they scramble for “clinical material” for their global health programs. While not discounting the good that comes from many interventions, Crane reveals the dark side of North American and European humanitarianism.
Many of the anthropologists who contributed to Ruth J. Prince’s and Rebecca Marsland’s edited collection, The Making and Unmaking of Public Health in Africa (2013), also argue that public health must be studied on the ground, not through the sovereign telescope of global health. Too often, Prince explains in her introduction, from that distant viewpoint estimates of health are “reduced to survival needs, and public health care provision is reduced to a technologically driven humanitarian intervention” (p. 31). Prince explicitly criticizes what is sometimes a “pharmaceutical paradigm of health” (p. 33). In contrast, these critical studies of the terrain of public health in Africa trace the legacies of colonialism, developmentalism, and modernization theory. Another collection of essays, Global Health in Africa (2013), edited by Tamara Giles-Vernick and James L.A. Webb, Jr., also addresses the colonial antecedents of global health and emphasizes the impact of the AIDS epidemic—but I expect its functional tone will prove far more appealing to global health faculty and students in U.S. medical schools.
In Life in Crisis (2013), anthropologist Peter Redfield recounts sympathetically the history of Médecins sans Frontières since its foundation in 1971, post-Biafra. His book is an ethnographic Bildungsroman: it is the story of the self-formation of a global humanitarian organization, the growth and institutional condensation of a worldwide emergency sensibility. Redfield uses this story to examine globalization on the ground in Africa. He tries to subvert the view from the Land Cruiser as much as the view from Paris. At one point he asks if MSF’s prized mobility had fostered disconnection from the devastated communities it serves: “Had MSF simply devolved into a neocolonial enterprise?” (p. 133). Redfield charts the painful steps that its staff took toward “decolonization” early in this century, the hard-won benefits of interrogating and deconstructing colonial legacies.
And now I’m about to turn to Renée Fox’s Doctors Without Borders (2014)….
As you no doubt can tell, my reading over the past two weeks has been as depressing as it is illuminating—particularly in the light of the Ebola epidemic, which is both human tragedy and, increasingly, global health debacle.
Warwick Anderson is an Australian Research Council Laureate Fellow and Professor at the University of Sydney. His most pertinent contribution to what might loosely be called global health history is The Collectors of Lost Souls: Turning Kuru Scientists into Whitemen (Baltimore: Johns Hopkins University Press, 2008). For a recent attempt to use postcolonial studies to reframe global health see “Making Global Health History: The Postcolonial Worldliness of Biomedicine,” Social History of Medicine 27 (2014): 372-84.
Image: White Library, Wilfredo Prieto. MONA, Museum of Old and New Art, Hobart, Tasmania, Australia.
The Cascadia Seminar: Ethnographic Adventures in Medical Anthropology
April 24-26, 2015
at Seattle University and the University of Washington
Plans are underway for the 3rd Cascadia Seminar! The Cascadia Seminar is a small, intimate, high-interest, low-cost weekend conference organized collaboratively by medical anthropologists on faculty at a number of different universities and colleges in the US Pacific Northwest and British Columbia (the Cascadia region), rotating among our various institutions. Previous Cascadia Seminars (at the University of Washington in 2011, and at Simon Fraser University in Vancouver BC in 2013) have proven this model to be successful in creating a new kind of intellectual space for medical anthropology.
Harriet Phinney of Seattle University is hosting the 3rd Cascadia Seminar, with assistance from Janelle Taylor of the University of Washington. Medical anthropologists (from everywhere) are invited to submit abstracts. Please send your abstract (350 words maximum) by November 7th, as an electronic attachment to firstname.lastname@example.org. Abstracts will be reviewed by a committee of medical anthropologists on faculty at our various institutions, all of whom also plan to attend. The committee will select seven abstracts, seeking papers that promise to be ethnographically rich and intellectually exciting. Decisions will be announced by December 19th.
The Cascadia Seminar will begin the evening of Friday April 24th with a keynote address at the University of Washington by Mette Nordahl Svendsen (University of Copenhagen). The rest of the weekend conference will be held at Seattle University. Four papers will be presented on Saturday April 25th, and three on Sunday April 26th, with no concurrent sessions. Each paper presenter will have forty-five minutes to present a substantial, well worked-out paper, with ample time for lively discussion. All participants will attend all papers, and optional no-host meals together will offer additional opportunities for conversation. The Simpson Humanities Center at the University of Washington will sponsor a reception following the keynote address, and Seattle University will sponsor coffee and snacks during the weekend sessions. The organizers gratefully acknowledge additional support from UW Seattle’s Department of Anthropology, the Program in Comparative History of Ideas, the Program on Values of the Department of Philosophy, and the UW Bothell’s School of Interdisciplinary Arts and Sciences.
The conference will be free of charge, though preregistration will be required in order to keep numbers manageable. Some people may want to stay with family or friends in the Seattle area; a block of rooms will also be available at a reduced rate at a nearby hotel.
We look forward to a stimulating & fun weekend!
Kirsten Bell (U of British Columbia)
Leslie Butt (U Victoria)
Johanna Crane (UW-Bothell)
James Pfeiffer (UW-Seattle)
Stacy Pigg (Simon Fraser U)
Host / Organizer:
Harriet Phinney (Seattle University), with assistance from Janelle S. Taylor (University of Washington)
(See the website for live links to preregistration and more information)
by Aslihan Sanal
Duke University Press, 2011. 244 pp.
Sensitively written and deeply insightful, Aslihan Sanal’s ethnography of kidney transplantation in Turkey in the 1990s and 2000s is an intimate stitching of life histories, national and institutional narratives, and shifting meanings of life, death, and the body. Sanal takes the book’s beautifully multivalent title from a Goethe quotation about the psychic imbrication of external and inner worlds, foreshadowing her deep engagement with the psychological and her attention to realms of uncanny, unsettling experience. These “new organs within us” stand at once for bodily organs that are donated and transplanted, the creation of organ transplantation as an ethical and viable medical technology, and the psychic and bodily transformations of her informants in their personal and social lives. Sanal terms this complex topography a biopolis, a “universe” of technologies made local and personal (11). New Organs Within Us makes a unique contribution to a rich literature on how organ transplantation is made commensurable with cultural and religious cosmologies through the book’s unique attention to the ways these processes of commensuration leave residues of uncertainty and excess in individual and shared psychic worlds.
The book is divided into two parts titled “The Desirable” and “The Impossible.” Topically, Part One approaches the life histories of six Turkish transplant patients as well as an institutional history of transplant technologies and biomedical ethics in Turkey told by medical professionals. Part Two follows what Sanal calls “a geneaology of life-less objects all stemming from efforts to utilize the human body for medical ends: the suicide, the insane, the cadaver, and the sacrifice” (109). Together, these careful explorations address the book’s most explicit question: How did the transplant of cadaveric organs, once considered impossible in light of Muslim notions of a body on loan from God (emanet), become something to be desired? The concept of the biopolis allows her to speak at once of the ethical and epistemological landscapes forged through technology as well as the personal and social psychic spaces that make these shifts possible. Object relations theory from psychology and a subtle reworking of van Gennep’s rites of passage allow her to present organ transplantation as a ritual at multiple social scales: A young woman whose organs are harvested after she commits suicide becomes a posthumous hero for her sacrifice to the social body. Years later, seeking eternal solitude, another woman’s suicide note asks that her organs be left unharvested, to be allowed to “rot” along with her buried corpse.
Just as important to the unfolding of the “impossible” and the “desirable” is the uneasy relationship between the “known” and the “unknown”. Sanal uses these words in italics to track throughout the book the persistence of a deep entanglement between transplant organs and shadowy spaces “full of invisible beings and forces – ghosts, jinn, terror, oppression” (94). The unknown endures even as living and cadaveric organ transplants become logistical and ethical possibilities. As emerging technologies do boundary work on the realms of the known and the unknown, patients often find themselves deeply destabilized by their engagement with the biotechnological biopolis; a man cannot explain why he became violent towards the wife who donated him her kidney, a young woman question her religious beliefs and biological relationship with her family. Even surgeons and anatomists whose entire careers focused on making transplantation a locally acceptable and viable practice are not immune from experiencing the uncanny shadows of the unknown. A particularly innovative and compelling way Sanal represents this only partly exposed world of the unknown is by populating her biopolis with narratives and other discursive forms such as Islamic law, linguistic idiom, and writing and performance forms such as poetry and theatre. Most memorable is her discussion of artist Nazif Topcuoglu, whose work incorporates animal blood, organs, and bodies into social commentary. Here, Sanal subtly brings together the threads woven throughout the text by finding them in Topcuoglu’s artwork: the arresting uncanniness of the cadaver, the double entendre of sacrifice for God and the social body, and the rich social life of organs.
Narratives of the Turkish nation and its medical institutions are also woven through this story of transitions to possibility. It is here that her literary style is most in tension with the complexities of these histories; a historian or anthropologist of Turkey may desire a more fine-grained accounting of the events and trajectories that emerge through the text. At times it seems that the biopolis may be doing work for the unnamed concept of culture. Yet it seems to me that Sanal presents these national and institutional histories as something more like a life history than as empirical claims for certain kinds of Ottoman and Turkish pasts. Instead, she seems to present these histories as they may emerge in the field, that is, as parts of the dominant narratives comprising the topography she wishes to sketch. In this way, her literary style leaves open the possibility of complexity even as it may at times seem to obscure it.
In Sanal’s biopolis, bodies – living or dead, or somewhere in between – always exceed the scientific and religious spaces that work to contain them. Each current of life is handled with care, presented to the reader as deeply contextual as it is followed through transforming social and technological landscapes. New Organs Within Us therefore lays a powerful foundation for future contributions at the intersection of psychological anthropology, the anthropology of religion and ethics, and the anthropology of medicine and technology. The text almost threatens to burst at the careful seams that bring together these entanglements, yet the book thrives in this very tension. This bulging at the stitches helps convey complex imbrications of life, death, body and medicine while allowing for the uncertainty that runs throughout. True to her dedication to explore the excess in these processes of cutting and transforming, to attend to the ways in which technologies are incorporated through processes of social and personal internalization, this book cannot be simply dissected. It must also be felt.
Elizabeth DeLuca is a PhD student in Anthropology at the University of California, Irvine. Her main research involves aging and affective caretaking labor in Istanbul, Turkey in the context of health care privatization and biomedical treatment for Alzheimer’s Disease.
On the 5th of September, 2014, the blog Konakry Express recounted a report from Mme Fatou Baldé Yansané that there are severe shortages of gloves in health facilities in Guinea. Mme Baldé Yansané writes that midwives have only one or two pair of gloves each week. As a consequence, they have to reuse gloves or merely rub their hands with chlorine after consultations. This message was written over five months after the WHO’s confirmation of an Ebola outbreak in Guinea on their webpage. When I read the blog piece, I was completely stunned: how could it be that five months after the outbreak had entered the world stage, the simplest and cheapest personal protective equipment was still missing in health facilities in the subregion?
Sadly, this is not an isolated incidence. Drew Hinshaw from the Wall Street Journal reports this heartbreaking scenario from Sergeant Kollie Town, Liberia in August:
“Rubber gloves were nearly as scarce as doctors in this part of rural Liberia, so Melvin Korkor would swaddle his hands in plastic grocery bags to deliver babies. His staff didn’t bother even with those when a woman in her 30s stopped by complaining of a headache. Five nurses, a lab technician—then a local woman who was helping out—cared for her with their bare hands. Within weeks, all of them died. The woman with a headache, they learned too late, had Ebola.”
There is a particular irony to the story of missing gloves in Liberia, as the country is also home to the “largest single natural rubber operation in the world”, Firestone Natural Rubber Company. Although Liberian rubber is mainly used in Bridgestone car tires, the company says it also supplies rubber to companies manufacturing “vital medical components”, such as the latex gloves desperately needed in health facilities in the region. However, latex products are not manufactured in Liberia, the natural rubber is only harvested in Liberia and then shipped elsewhere for production—an all too familiar story of natural resource extraction on the African continent. A timely reminder too that not only are troubling racial immuno-logics at play, but that the epidemic is also deeply rooted in colonial histories of expansion and extraction (for a wonderful piece on the history of the Firestone Plantation and the crucial role science and medicine played in its establishment see Mitman and Erickson, 2010).
The lack of gloves is another reiteration of these violences and inequities, but this time refracted through the contemporary configurations of ‘global health’. How can it be that after decades of unprecedented financial investments in healthcare in developing nations, and in particular on the African continent, health facilities are still missing the most basic supplies?
Medical anthropologist James Pfeiffer has, in a recent podcast of Humanosphere, brilliantly analyzed the problems that Structural Adjustment Programmes and the logics of the aid industry more generally have created for health systems in economically poor countries. I do not want to rehash those important points here again; please check out the podcast directly for that. Instead, I want to focus on the temporal and spatial logics of global health that underlie many of the processes James describes.
Over the last decades and not least through the UN’s Millennium Development Goals, health initiatives have received unprecedented attention and funding, and many advances have been made. However, together with the MDGs came a particular framing of health and health interventions. The MDGs name HIV and malaria (‘and other diseases’), as well as malnutrition, child mortality and maternal health as priorities, and this has real-life consequences for policy and funding decisions. HIV, malaria and tuberculosis still receive the biggest share of the funding. Additionally, all MDGs have clear numerical aims: e.g. “reduce child mortality by two-thirds, between 1990 and 2015”. This clear-cut numerical focus has performative effects, as it renders health and progress measureable and accountable, and so – it is assumed – keeps momentum going and funders on board. However, it has also meant that we have in recent years overwhelmingly focused on vertical, single–disease interventions. The rationale behind this is exemplified by a statement from Melinda Gates in 2007, when she introduced the Gates Foundation’s focus on malaria eradication: “And because we can’t fix the whole health care system in all of Africa, (…) the only way to end death from malaria is to end malaria”. For many, the focus on vertical interventions and technological fixes was, and continues to be, pragmatic: the promise is that with the appropriate tools and benchmarks, progress can be measured and the messy realities of international politics and local infrastructures circumvented for more effective results. This has led to a proliferation of vertical disease projects, many of them hybrids involving international donors, NGOs, public-private ventures, research and data collection enterprises. Social studies of global health have shown that this has led to a fragmentation of health care provision, which in turn has resulted in massive uncertainties for patients. In many places it is difficult for patients to determine where medications and care are currently available. Spatially, the logic is one of parachuting specific interventions into selected places. It not only leaves out many places, but also many diseases and illnesses. It is a logic of patchworks, adjuncts and circumvention, or an ‘archipelago of care’ (Geissler, 2013; Rottenburg, 2009).
The temporal imaginary of global health contributes to this dynamic. Interventions are not only patchy, but they are also time-limited. Today most come in the form of projects, a process that has been discussed as ‘projectification’ (Whyte et al., 2013). Under the label of evidence-based medicine, new intervention strategies and technologies are trialed, scaled-up and then all too often handed-over to Ministries of Health that lack the financial and operational means to sustain the interventions (note, most Ministries of Health do not lack the expertise!).
West Africa’s Ebola epidemic all too painfully shows that this spatio-temporal logic of patchy, vertical and time-bound projects has significant shortcomings. Health care infrastructures cannot be circumvented when one aims to improve health care sustainably. Well-functioning infrastructures are flexible and adaptive, able to change gear and respond to shifting disease landscapes. Just like the harvesting of rubber and the production of gloves, they are rooted in history and configured in specific political economies. The predominant logic in global health is based on and has led to an impoverished understanding of health and wellbeing. We assume we know which diseases and ailments are relevant and crucial to address. Ebola teaches us that we are well advised not work from this bold assumption. A humble version of Socrates’ classic “I know that I know nothing” seems to be a better guide to navigating complex and rapidly shifting disease landscapes. The lack of gloves, personal protective equipment and skilled personnel in West Africa’s health facilities is not only a result of war or weak states, but also of the spatio-temporal logic of global health, and it presents us with an urgent call for change in global health approaches and logics.
Uli Beisel is Assistant Professor of Culture and Technology at Bayreuth University. She has worked on human-mosquito-parasite intertwinings in malaria and its control in Ghana and Sierra Leone, where she was particularly interested in how we live together with organisms that are harmful to human health. Her current work focuses on translations of new health technologies in global health initiatives, and their relation to uneven geographies of access to health care in Uganda and Rwanda.
Thanks to Ann H. Kelly for feedback on the draft and encouragement.
Geissler, P. W. (2013). The Archipelago of public health. Comments on the landscape of medical research in 21st century Africa., In Ruth Jane Prince & Rebecca Marsland (ed.), Making and Unmaking Public Health in Africa: Ethnographic and Historical Perspectives. Ohio University Press. pp.231 – 256
Mitman, G. and Erickson, P. (2010). Latex and Blood: Science, Markets, and American Empire. Radical History Review 107 (2010): 45-73
Rottenburg, R. (2009). Social and public experiments and new figurations of science and politics in postcolonial Africa. Postcolonial Studies 12 (4): 423-440.
Whyte, S. R., Whyte, M.A., Meinert, L. and Twebaze, J. (2013) Therapeutic Clientship: Belonging in Uganda’s Mosaic of AIDS Projects. In J. Biehl and A. Petryna (eds.) When People Come First: Anthropology and Social Innovation in Global Health. Princeton: Princeton University Press. pp.140-165
 The global health community started to learn this lesson and health systems strengthening has started to receive more support and funding. However, most HSS initiatives still happen within the logic and institutional frameworks of vertical, numerical interventions, and are thus limited in their scope and reach.
Hoses spraying disinfectant, white spacesuits, and police roadblocks: these are the tangible technologies of expertise in West Africa. Amid images of ongoing efforts to contain Ebola, I find myself asking: What is the role of the medical anthropologist in a global health emergency? What expertise can we contribute? As of 1 October 2014, the World Health Organization (WHO) counts 7178 reported cases of Ebola, and 3338 deaths. On 8 August 2014, the WHO authoritatively declared the Ebola epidemic an “extraordinary event” and indicated that conditions for a public health emergency of international concern (PHEIC) had been met. The New York Times suggests that Ebola cases could top one million within four months. Meanwhile, Sierra Leoneans have been quarantined or put under lockdown and curfew to curtail the spread of the virus. The rhetoric of emergency, that familiar anchor of compassion, is not new, but nonetheless urgently calls upon us to do, to act, to document, and to intervene in this present crisis (Fassin and Pandolfi 2010:16).
By nature (or culture), however, anthropology is slow, tedious, and careful; these descriptors gain currency in their juxtaposition with the fast-paced and urgent nature of global health. Yet, our species of cultural expertise is in demand. The rise of a global health industry has furthered the institutionalization of medical anthropology in the past decade. The relatively large number of medical anthropology faculty jobs available in recent years and the demand for seats in our classes suggest that the sub-field is a “hot” one. We have carved a (small) niche as expert global health commentators and practitioners: our classes “enhance” and “complement” medical school or pre-med curricula by instilling in future scientists, doctors, and public health workers an anthropological approach to health, the body, and intervention. Anthropologists of global health have come to occupy a clear compartment in a wider discursive field: recalling Trouillot’s “savage slot” (1991), we might term it the “global health slot.” As anthropology emerged as a discipline, it established a monopoly over speaking about “primitive” people. Returning to Trouillot’s work, Joel Robbins (2013) argues that anthropological production today is driven by “suffering slot” ethnography, which centers the subject living in pain, in poverty, or under conditions of oppression. Celina Callahan-Kapoor reminds us that as medical anthropologists, our ethnographic accounts emerge from and reinforce a kind of medicalized savage slot. Here, I use the phrase “global health slot” to draw attention to two things. First, the work produced by anthropologists of global health—even as it speaks to authors’ moral and epistemological commitments—attains value in a wider discursive and economic field, here, “global health.” Second, although the kinds of subjects (people) that appear in our work reflect our discipline’s investments, we might also consider how these subjects are always already illuminated against the objects they move through, negotiate, come up against, and are narrated by (here, global health and its anthropologists).
How might the turn to global health work to separate scholarly analysis from the specificities of local history and politics? What implications does our own embeddedness in the very offices and economies we critique have for the knowledge we generate? The unfolding Ebola epidemic sparks these questions for me, although I think they point to issues that anthropologists of global health face even in “non-emergency” times (if any remain).
The “global health slot”
The emergency of Ebola in West Africa, and the global health slot I have been describing, compels medical anthropologists, if not to “do” something, to “say” something. Rightly so, I think, anthropologists have long blurred the lines between these verbs, resisting the overwhelming pressures to “align, to be useful, to be active in regimes of intervention” (Marcus 2010:373). Yet, Ebola is a tragedy that cuts across almost all of the commitments shared by anthropologists of global health, science, and medicine: it exposes the political economy of health and illness; it illustrates flows and stoppages that direct the mobility of science and technology; it brings to light the shortcomings of “quick fix” or magic bullet solutions to structural problems; it draws attention to the health consequences of reconfigured social relations produced by health and development regimes of governance; and it tragically accentuates the racialized logics that have long determined which lives “count.” Some anthropologists are right now on the front lines of the epidemic, and Sharon Abramowitz recently compiled a concise list of ten real things anthropologists can do to fight Ebola in West Africa. Action-oriented approaches are crucial in times of emergency, and I concur that ethnographic expertise would likely improve the response in West Africa. However, my interests in this essay center on more humble and mundane kinds of “doing”: writing, thinking, and teaching about an unfolding epidemic to various audiences, including ourselves.
As a bystander in Ohio to an epidemic taking place in West Africa, I’ve been jotting down notes, collating articles documenting the unfolding events, following Twitter, and discussing Ebola with students and colleagues. In August, I sat down and spent a day trying to get some thoughts on paper; like many of you, I was horrified by both the epidemic’s toll and media coverage of Ebola. I wanted to place accounts of riots, mistrust, and violence amid Ebola in historical context. I wanted to question the turn to “informed consent” as the bottom line of global research ethics through close analysis of the tragic decision not to give a Sierra Leonean doctor the Zmapp serum. I found myself balancing the compulsion I felt—as a medical anthropologist and a “Malawianist”—to say something, and my hesitance to graft theoretical frameworks I’ve been socialized into on to places I have never been to. I felt unsettled by: 1) My impulse to rely on comparative ethnographic data and theoretical packaging in my analysis; 2) My willingness to speak from a general position—as an anthropologist of global health—about particular places. The latter, especially, felt too “global health-ish.” In other words, I feared that my reading might overlook the significance of small-scale organization and phenomena, in its emphasis of large-scale social patterns common to “Africa.”
To probe my own discomfort, I thought it might be interesting to excerpt from the essay I wrote back in August in order to subject it to a critical re-reading. Maybe you can help. I imagined a general audience (of non-anthropologists), but it was precisely in re-reading what I wrote that I felt that sharing it publicly might generate more questions than answers, and might do injustice to what I see as the potential of an rigorous anthropology of global health. In staging a reading of my own words, I hope to encourage medical anthropologists to occupy the global health slot more ambivalently and to push forward readings that seem to apply everywhere and anywhere to more effectively capture the particularities of place. I hope my essay can serve as a platform for pondering what might be the goals of anthropology in an emergency, and for serious consideration of the promises and pitfalls of the global health boom for anthropology.
“Angry mobs” and “Ebola is not real!”
Let’s look at an anthropological reading of violence leveled against doctors, clinicians, and those trying to manage and contain the epidemic in West Africa. This reading is symptomatic of my own occupation of the “global health slot;” you might imagine yourself or a colleague making similar points for a general audience (and certainly, many anthropologists have):
If you have been following the epidemic, you will recall that on 17 August 2014, BBC reported that an “angry mob” attacked a health center in Monrovia’s densely populated West Point township, with some suggesting the protesters were unhappy that patients were being brought in from other parts of the capital, others shouting “There’s no Ebola!,” and still others believing that Ebola is a “hoax.” “Ignorance is high and many people are reluctant to cooperate with medical staff,” suggested health experts. In his depiction of the situation on the ground, Sierra Leonean journalist Umaru Fofana describes how his colleague watched relatives of Ebola patients “pelt the hospital with stones;” he goes on to bemoan conspiracy theories and denialism, and explains how locals are blaming medical workers for the disease. On 20 August 2014, journalist Norimitsu Onishi, writing for the New York Times, documented “clashes” in the same neighborhood where the patients escaped on 18 August, “hurling rocks” and “storming barricades.”
These outbursts of anger and outrage, and the physical violence they engender, have largely been read in the mainstream press as spontaneous violent reactions to those “who are only trying to help” (cf. accounts of the protests and “clashes” in Ferguson, Missouri). Claims that “There is no Ebola!” or beliefs that medical workers are bringing rather than managing Ebola are read as tragic expressions of African ignorance and irrationality. Such accounts prompt even a critical reader to bemoan the persistence of irrational beliefs in conspiracy theories, witchcraft, and superstition; these beliefs are taken to be a major obstacle to the rational and scientifically proven interventions and efforts to contain and manage Ebola. “Culture” explains these beliefs, just as it takes up much space in WHO guidelines that emphasize “funerals and burials” and “misperceptions” and misinformation as issues to be dealt with in the ongoing fight against Ebola. (We should note that a recent Harvard poll shed light on “misperceptions’ of the virus within the US: More than 25 percent of a sample of Americans said they were concerned than they or someone in their immediate family might contract Ebola in the next year, and 39 percent were concerned there would be a large Ebola outbreak in the US in the next year). While there are real transmission risks associated with funerary practices in West Africa, and with circulating “misinformation” about Ebola, I draw your attention to how, in all of the above statements, “culture” in the time of crisis is always already pathological, irrational, non-innovative, and bad.
As we consume representations of angry Africans hurling stones at intrepid health workers, we must consider such events not as out-of-the-blue clashes between irrationality and rationality, but as symptoms of underlying tensions between insiders and outsiders, the researched and the researchers, the poor and the rich, and the immobile and the mobile. These interactions are not new, even if they are made more visible to us by the spectacular and horrifying real time documentation of Ebola’s travels: blood soaked mattresses, angry mobs, and feces covered floors.
Anthropologists and historians have long taken conspiracy theories and rumors across sub-Saharan Africa (and elsewhere) not as mere silly “stories” but as reservoirs of information about the particular kinds of unequal and often exploitative relations between outsider-led projects and local people and places. In her book Speaking with Vampires: Rumor and History in Central Africa, for example, historian Luise White (2000) documents and analyzes colonial-era rumors and conspiracy theories in East and Central Africa, viewing them as viable sources of historical insight about the fraught relations between ruler and ruled. These stories are not so different from those circulating right now in West Africa that accuse health workers of bringing Ebola; the ‘rumors’ White documents accused game rangers of capturing Africans, mine managers of keeping them in pits, or firemen of subduing Africans with injections. In 2007-08, I documented similar kinds of stories in rural Malawi that accused foreign researchers collecting survey data of being “bloodsuckers” (opopa magazi) who steal blood and information from them. Archival sources from 1930s Malawi (then Nyasaland) indicate that health campaigns, surveys, and vaccination efforts were often stymied by similar rumors, dismissed by colonial officials as “African superstition”. The accounts of Liberians hurling stones at health offices also find corollaries in stories I heard about rural health posts and survey research vehicles in 2007-08 Malawi being vandalized by stone-throwing crowds of villagers.
Taken in bulk, the widely circulating conspiracy theories, violence, and rumors in times of health crisis (notably not unique to Africa) that so effectively capture headlines bolster our imaginary of Africans as superstitious, in need of help and education, and ignorant of the wonders of science. These stereotypes are reinforced by imagery that feeds into pre-existing caricatures of Africans as hemmed in by their culture. They are closed off, not only to science, but to the western world; a recent Times headline described a village (“a mud brick community of rice and cassava farmers deep in the forest”) “frozen” by fear and death. In its report on the Ebola situation in Nigeria and Guinea, the WHO described 26 villages as “highly resistant to outside help,” until they were penetrated (saved?) by health workers and “opened” to the outside.
It behooves us to remember that the “opening” of Africa to medicine and the arrival of western or western trained “health workers” was often concurrent with the violent opening of Africa to racialized capitalism. In south central Africa, for example, one of colonial medicine’s main objectives was to ensure that black bodies remained fit enough to labor under poor conditions in mines in Southern Rhodesia or South Africa. Across Empire(s), health workers became “police” who toured villages to forcibly oversee vaccination; in early 20th century Uganda, Africans were forcibly moved from tsetse fly habitats (also important sites of fishing and hunting livelihoods) to prevent sleeping sickness (Vaughan 1991, Headrick 2014). In mid-nineteenth century Senegal, French colonial health authorities used yellow fever policy to justify forced removals that targeted the ‘unsanitary’ and ‘uncivilized’ indigenes, but left merchant families alone (Ngalamulume 2004). Of course, such instances of militarized and racialized medicine augment suspicions stoked by scandals such as the Trovan clinical trial in Nigeria and the perinatal AZT trials in South Africa, just two memorable examples from among many others that dot the landscape of an Africa that has long been the world’s “living laboratory”(Tilley 2011).
We recognize this account as anthropological because it asks readers to destabilize dominant representations of “African culture,” to consider the historical circumstances and particularities that have produced these events, and to place them squarely in the long and still unfolding contexts and politics of intervention across Africa. These agendas are those we instill in our students and give to our universities (or other institutions) through our intellectual and other labor. They are valuable precisely because they contend with or complicate dominant narratives of well-intentioned global health or science encountering “stubborn culture.” Anthropology establishes its legitimacy by drawing its objects into the global health slot, reframing them, and generating knowledge for interested parties (ourselves and others).
Now, I ask you: What do we really learn about Ebola in a particular time and place after reading the above? We learn, perhaps, that we should “historicize” so as to better understand the present. Rumors and irrational responses to health workers are not inexplicable or random: they are products of a long history of fraught encounters between insiders and outsiders. Yet, while my effort above to draw connections between a constellation of historical examples (from Malawi, Uganda, Senegal) of similar phenomena is useful, a close examination of the relations and conflicts between various kinds of insiders and outsiders in the specific West African locales affected by Ebola would help us better understand the “clashes” between medicine and culture we witness there. To draw connections and comparisons is useful, but can also evacuate events of their particularity. Re-reading my own reading, I have so many questions, and maybe I just haven’t looked in the right places for the answers: What sorts of projects (medical and otherwise, recent and in the distant past) have been working in the areas where these violent responses have occurred? How have they variously engendered trust, hope, frustration, suspicion, and fear? How might a particular history of these affects in these places help us to really understand this present moment of crisis? How, specifically, has “culture” been packaged and instrumentalized in state, development, and other projects, and how might this local politics of culture play into efforts to alter risky practices amid a health emergency? Though anthropologists these days focus on “NGOization”, I wonder about the historical relations of trust and distrust between a citizenry (and all the different kinds of people who make up the citizenry) and its government. (I have found Ashoka Mukpo’s reflections on the history of cynicism toward government in Liberia very useful in beginning to consider this question). Inevitably, we draw connections between what we know and what we wish to know: I work in Malawi, so I wonder whether Sierra Leone, Guinea, or Liberia are also over-researched or cross-cut by dense networks of NGOs and projects. (An aside: Of course, my reading is imprecise and broad strokes, you might say, because I don’t work in West Africa. To assume, however, that a medical anthropologist not working in one of the countries most affected by Ebola has nothing of value to say about an ongoing epidemic is dangerous. My critique is less about the lack of “local color” than it is about how particularity might disrupt the narratives we—anthropologists—tell ourselves about global health or, in this case, a global health emergency).
Like any discipline, anthropology has its buzzwords, its pet theories, and its investments. We read accounts about other places in the pages of our journals and books and often what we remember most are the inventive interpretive concepts generated by their authors: therapeutic citizenship, scientific sovereignty, states of exception, pharmaceuticalization, humanitarian logics, and so on.[i] (Though I did not deploy any buzzwords above, my account is symptomatic of its machinery of production: the global health slot). I worry that anthropologists of global health, situated as they are in the global health slot, may fall prey to the very logics we are so fond of critiquing. Even as we identify the portability of workshops, emergency responses, and health education programming –just a few of the trappings of ‘global health’–as universalizing, imprecise, and ineffective, might we be guilty of overusing popular theoretical concepts that “travel well?”
Medical anthropologists are committed to excavating the structures and political logics that enable and fail to mitigate suffering amid Ebola. They have shed light on the question: Why is Ebola so out of control? Paul Farmer gets at the heart of the matter in pointing out that surviving Ebola is a matter of “care” rather than drugs. Others have drawn attention to massive brain drain and crumbling health infrastructure in the region. Yet, these explanations immediately raise more questions for me: Why have Liberian or Sierra Leonean doctors and nurses left for greener pastures (and how does this differ from the push and pull forces driving emigration of Kenyan or Malawian doctors)? How do the particular movements of people inevitable during conflict and post-conflict periods in Liberia play into the lack of healthcare personnel? Who are the people on the front lines of the epidemic? What are their dreams, hopes, and struggles, and how do their everyday lives influence the work they do (which has, finally, thrust them into a spotlight usually claimed by renowned researchers or foreigners)? We may agree that global health and epidemic containment efforts, in rhetoric and form, emerge from imperial (or militarized) humanitarian logics. Yet, how does this look in one place versus another? How do our readings across places reify—perhaps unhelpfully—a global health that looks different in all of its locales?
Ebola exposes the fault lines of global society, and brings to light the calculus that underlies questions of who can leave, who can access treatment, and who should be saved. This calculus maps onto ‘pre-sorted’ social divisions, but ones that far exceed “local” and “global” or black and white. In analyzing the hierarchies of value that propagate the uneven distribution of suffering and death, a nuanced consideration of how local bodies are marked by their position in matrices of power, class, gender, able-bodiedness in a particular place would be very helpful. How does a medical anthropologist navigate between the impulse to say something, and the glaring gaps she sees in her accounts? How can we convincingly connect structures to lives and theory to ethnography even, or especially, in times of emergency and for various audiences (and here I include fellow anthropologists)?
I am continually struck by the familiarity of stories I read about AIDS programming, knowledge production, NGOization, and so on in anthropological journals. I strain to see something I didn’t see before, and hesitantly note the seeming commensurability between very different places (this is not to discount a wonderful body of work; I am being somewhat polemical and sloppy). I have begun to wonder if the “sameness” I see all around me is difference dressed up in articles of clothing all anthropologists have in their closets: biopolitics, regimes of value, politics of ontology, traveling technologies, the politics of becoming, boundary objects, and multispecies ethnography (see Footnote xii). Anthropologists of global health take significant interest in how global standards and formalizing practices serve to fix, stabilize, and make “other” realities workable for scientists, policy makers, and development workers; so, too, do they operate in our own discipline.
In our willingness to graft theory or concepts onto places, do we mirror global health’s own penchant for traveling toolkits and standards? It seems I have come round to calling for a more “particular” anthropology of global health. This surprises me, a bit. I think I am pushing myself—and all of us—to be open to the particular, to invite it in to the “global health slot” so as to mess up or slow down its machineries of production. Maybe, on the heels of Vincanne Adams and colleagues’ (2014) recent call for “slow research” in global health, I am simply calling for “slow(er) theory.” Even as we unpack rhetoric that casts culture as static, stubborn, and a stumbling block to health and science, might there be value in considering that, for the purposes of thinking, culture does have a certain stubborn—and productive–particularity? How do we not lose sight of this particularity, even in times or places where our usual toolkit of slow methods fails us because of urgency? The Ebola epidemic is a particularly good site for pondering these questions, precisely because plagues—long a favored topic of some of history’s greatest novelists and writers—seem to look so similar across time and space: “The truth is that nothing is less sensational than plague, and by reason of their very duration great misfortunes are monotonous” (Camus 1991: 179). But, even as we recognize the suffering, the social fissures, and the narrative arc of Ebola as timeless and familiar, is it not anthropology’s responsibility to illuminate something more, to carefully narrate a story that is nonetheless local in its universality? How do we move beyond “It’s complicated,” to unravel the particular strands that make it so?
I close by asking more questions, for which I have no solid answers, but which I look forward to discussing further (and maybe the role of anthropology in an emergency is to generate questions): What should anthropologists say about Ebola? How might what we say, and even our impulse to speak in the first place, be symptomatic of a certain culture of standardization across a sub-field that is currently riding a wave of popularity? I suggest that it might be helpful to think about ways to struggle against a “global health slot” that seduces us to: 1) Reify the global, and “global health” to achieve our own critical impulse or fit into ongoing conversations in our discipline; 2) Obscure our own complicity with the rise of global health as a powerful governance structure on a global scale; and 3) Become swept up in a global health market—including our own discipline—that privileges those things it can most easily digest, commodify, and translate across difference. Moments of health crisis abroad urgently invite us into the global health slot. What is the nature of the knowledge we want to produce? What questions should we be asking? Who can speak? Isn’t it time we theorize not only global health, but the “global health” anthropology has created for itself?
Crystal Biruk is Assistant Professor of Anthropology at Oberlin College. She is writing a book titled Cooking Data: Culture and Politics in an African Research World.
Acknowledgements: Thanks to Julie Kleinman for helpful conversations.
Adams, Vincanne, Nancy J. Burke, and Ian Whitmarsh. (2014). “Slow research: Thoughts for a movement in global health.” Medical Anthropology 33(3):179-197.
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Robbins, Joel. (2013). “Beyond the suffering subject: toward an anthropology of the good.” JRAI 19:447-462.
Tilley, Helen. (2011). Africa as a Living Laboratory: Empire, Development, and the Problem of Knowledge, 1870-1950. University of Chicago Press.
Trouillot, Michel-Rolph. 1991. “Anthropology and the savage slot: The poetics and politics of Otherness.” In Recapturing Anthropology: Working in the Present. Santa Fe, NM: School of American Research.
Vaughan, Megan. (1991). Curing their Ills: Colonial Power and African Illness. Stanford University Press, pp. 43-44.
White, Luise. (2000). Speaking with Vampires: Rumor and History in Central Africa. University of California Press.
[i] These concepts are critically useful in my own thinking and writing. My point is not to single them out as colonizing forces of in the larger wordscape of anthropology. This essay is not adverse to “theory” but points, as others have, to how theory itself is a traveling technology that we learn to love, not unlike the good old Zimbabwe bush pump (deLaet and Mol 2000).
This undergraduate course introduces ways anthropologists theorise and research mental disorder, treatment and recovery. It reflects a growing interest in anthropology’s encounter with the key ‘psych’ disciplines and the human and social sciences, evident in the well-spring of new university courses in psychological and psychiatric anthropology in the U.S, Canada and Australia, and the transnational migration of this interest to Europe, Asia, and the global South. Taking as given the shifting meanings of ‘abnormality’, the title reflects the priority given to the term disorder over disease. Disorder, as Good (2012) argues, can encompass historical, political, psychoanalytic, postcolonial studies and other comparative approaches—linking the madness of the state and individuals, and forcing attention to the often violent ways political moral and epistemic ‘orders’ are established (518).
The challenge lies in synthesising diffuse classic, and burgeoning contemporary, literatures in a concise engaging and accessible way for students. In designing this course for primarily psychology students, I found older readers in psychological anthropology engaging heavily with psychological theory and applications across diverse topics not necessarily related to mental health—hence the focus ‘too general’. In engaging mental health and illness, others tended to prioritise the lens of culture, or else single disorders—hence the focus, although rich, ‘too narrow’. So one way I’ve tried to bridge the lacuna is by compiling lists of key and additional readings—and of ethnographic films and websites like Somatosphere which are valuable tools for cutting through the complexity of the literature.
This course addresses ten diverse topics, linked via some key paradigmatic and theoretical frames. These broadly encompass anthropological representations of ‘culture’, and their relation to (the equally unwieldy terms) ‘biology’ and ‘structure’. One objective is to consider anthropological thinking about psychiatric illness in order to identify how anthropologists can assist thinking through classificatory problems of cultural and conceptual translation. A second concerns the goals of treatment, rehabilitation or therapy. What underpins expectations of a ‘return to normality’? Does medicine’s goal to ‘cure the symptom’ mean suppressing rather than exploring their problems? Third, can, how, or even should an anthropology of mental disorder bring its expertise and methods to improve the suffering of patients? These questions about positioning are presented as driven partly by funding priorities, governments, universities and research councils; but also by anthropology’s struggles to overcome its own identity problems rooted in esotericism, elitism and the legacy of colonialism.
One broad aim is to overview the epistemic shift from explanations dominated by cultural and structural ecologies to those from studies in biomedicine, biological and global psychiatry, neuroscience and global mental health. These shifts have been shaped by a confluence between local intervention and specificity—through ‘local biologies’ (Lock 1993)— alongside the mass reconceptualization of mental illness as neuro-psychiatric or brain disorders. In U.S. psychiatry the ‘brain disease’ model of mental health is dominant. Whilst anthropologists typically emphasize social, contextual and cultural influences on mental illness, challenges to assumptions about context and the environment are increasingly coming from biocultural anthropologists, and from critiques that draw on emerging techniques in clinical science and brain studies.
The re-turn to biology via brain studies and neuroscience is of course not the whole story. It has met with strong critiques from cultural psychiatry, psychoanalysts, activists (including psychiatrists) and political movements. This short course cannot solve the irresolvable question of theory’s relation to practice. Rather, it seeks commensurability in relation to some interpretations crafted by anthropologists of mental illness, abnormality and disorder. It does this by tracing these debates through time, across varied social and cultural settings, through their geographical distribution across the globe, and by subjecting single ‘disorders’ to political, cultural, social and biomedical scrutiny.
Mental disorder can provide an innovative, challenging way to think about the ongoing transformation of anthropological knowledge at a time of increasing fragmentation of inquiry, while also connecting it to traditional forms of anthropological scholarship and debate. This is a work in progress for both teachers and students. Please do share suggestions for readings, films, links to wider topics etc.
If you are unable to view or download the pdf embedded through Scribd, you can also access it here.
Nichola Khan is a Senior Lecturer in the School of Applied Social Sciences at the University of Brighton, UK. Her research interests in social and psychological anthropology have developed around violence, transnational migration, mental disorder and theories of suffering—via a regional focus on Pakistan, Afghanistan and Afghan diasporas.
Good, B. 2012. Theorizing the ‘subject’ of medical and psychiatric anthropology. Journal of the Royal Anthropological Institute, 18:515–535.
Lock, M. 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley, CA: University of California Press.
When my parents came to visit a few weeks ago, they brought with them legal documents for my siblings and me to sign relating to their wills and end of life care. Happily, they did not do this because such an event is considered imminent; rather, they recently retired and are simply putting their affairs in order. The ensuing conversations revealed a tiny glimpse into how complicated and surprisingly bureaucratic death in America is. I therefore chose death and technology as the subject for this week’s Web Roundup.
The Atlantic interviewed Caitlin Doughty (of Ask a Mortician) about death practices in America, the work of a mortician, and how she would like to die. They have another piece on how deaths are covered by the media, that is to say, whose deaths are covered, and in what way, to what end. Researchers looked at the American news media’s coverage of deaths outside America and determined that the depth of coverage an event received was directly related to the country’s proximity to the US, and to the number of American tourists who visit the country in question per year. By depth of coverage, they mean the degree to which an article or series focused on individuals killed, rather than reporting deaths as a statistic with little humanizing information.
NPR did a story about how and where Americans die. The focus is on New York City, though there is some data on the rest of the country. Due to a combination of medical culture and structural constraints, although most Americans say they would prefer to die at home, a great number spend many, if not all, of their last days in a hospital.
The Hollywood Reporter did an interesting in-depth piece on the anti-vaccine movement in affluent LA neighborhoods, including an interactive map, based on state vaccination records, of the risk of potential infection in over 3500 preschool, daycare, and kindergarten institutions.
Ezekiel Emanuel wrote an article about how he hopes to die at 75. It’s an interesting read, though I wouldn’t recommend forwarding it to your parents, as they tend to take it the wrong way.
Changing gears slightly, in You Should Be Terrified of Superintelligent Machines, a writer for Slate argues that we have something to fear from the development of technology that is purportedly “more intelligent” than humans, though not, perhaps, for the reasons you might expect.
Vice interviews Martin Rees (professor of cosmology and astrophysics at the University of Cambridge) about the ways in which humans will have to change to live in space or on other planets, and a post-human future in which beings are capable of manufacturing such changes in themselves.
The magazine, The Baffler, hosted a debate between Peter Thiel (the co-founder of PayPal) and David Graeber about the failed promises of and potential futures of technology. You can read a write-up of it on Inc.com or in the New York Times. Both Graeber and Thiel agree, though for very different reasons, that technology has largely failed to live up to its expectations over the last half-century. Slate has an article arguing that urban designers and policy makers should read more science fiction. This article is part of the lead-up to an event in New York City on October 2nd on science fiction and public policy, which takes as its starting point the assumption that technology has largely failed to deliver on its promises. Info on the event, which you can stream as a live webcast, is here.
In the wake of GoPro going public (now valued at about USD 3 billion), the New Yorker did a long piece on the pros and cons of constantly recording everything. It’s a story we’ve all heard, but no less thought provoking for having been told before. “GoPro, like Google Glass, has the insidious effect of making the pervasiveness of cameras seem playful and benign when it may one day be anything but. The Economist called the film-everything culture “the people’s panopticon”—the suggestion being that with all these nifty devices we might be unwittingly erecting a vast prison of self-administered surveillance.” They also discuss the idea that having cameras like this pushes athletes to attempt more and more daring feats and that, in the event of an accident or death, the GoPro can become a kind of black box.
To balance all this talk of death with one thing about birth: The New Yorker has an interesting video on how and why C-sections became so common in the US.
Welcome to our inaugural “Book Forum.” Our aim is simple: to promote lively exchange between a group of scholars and an author, allowing for experimental and inventive engagements that are not so much about evaluation but rather draw on concepts and shared commitments. It’s probably worth noting that Somatosphere will continue to feature book reviews, which have been a mainstay from the beginning. Our hope is that the forums will follow along a well-trod path made by the reviews, into new clearings.
Our first book is Jeremy Greene’s Generic: The Unbranding of Modern Medicine (Johns Hopkins University Press, 2014). Greene’s book is a dizzying historical-political-social-cultural account of the forms generic drugs have taken over past several decades. The book is a story about the development and circulation of these drugs––their makers and consumers, advocates and detractors, within and between the domains of ethics and markets––as “generics” stir debate and catalyze change (seen and unseen, felt and unperceived) in the healthcare marketplace.
We hope you enjoy the forum. We have more planned in the coming months, which will include books by Warwick Anderson, Sameena Mulla, Lisa Stevenson, and Christian McMillen.
Below are links to four brief comments on Generic written by Anne Pollock, Nancy Campbell, Joseph Dumit, and Stefan Ecks, as well as Jeremy Greene’s response to his interlocutors. The entire forum is also available as a single pdf here and is embedded below.
Comments on: Greene, Jeremy. Generic: The Unbranding of Modern Medicine. Baltimore: Johns Hopkins University Press, 2014.
Generic virtue and vice
Nostalgia is always about the present
The Generic that is Right for You
Generics and their Doppelgängers
Response to comments:
the specificity of Generic
Ten Things that Anthropologists Can Do to Fight the West African Ebola Epidemic by Sharon Abramowitz
Like other anthropologists who have woken up mid-career and found the countries where they’ve lived and worked awash in mass deaths (and let’s be real… that’s quite a lot of us), my initial response to the Ebola outbreak in West Africa was to hope that the experts had the situation under control, and bury my head in the sand.
Soon, the epidemic outpaced the global health response, and the calls for help grew more urgent, but anthropologists’ phones have stayed startlingly quiet. While leaders at the Centers for Disease Control (CDC), Médecins Sans Frontières (MSF), and the World Health Organization explained how factors like culture, weak governance systems, human behavior, and social organization made the outbreak unintelligible to the global health community, academics who work in the region like Danny Hoffman, Rosalind Shaw, Mats Utas, Chris Coulter, Mary Moran, Susan Shepler, Adia Benton, Mike McGovern, Sasha Newell, Gwen Heaner, and Marianne Ferme, not to mention anthropologist from the global south like Sylvain Landry Faye, have remained untapped as resources for understanding and creating innovative new approaches to attacking the Ebola outbreak at its source.
Let me share one example from a recent phone call that I made to the New York City office of Doctors Without Borders:
SA: Hi. I’m a medical anthropologist with 14 years of experience studying healthcare, health systems, and humanitarian aid in Guinea, Liberia, and Cote d’Ivoire. I heard your director put out a call for help on Ebola on NPR today, and I really think I can help you.
MSF: I’m sorry, but we don’t work with medical anthropologists in general, except for under very rare circumstances. If you really want to help out Doctors Without Borders, you are going to have to go to our website to register as a volunteer. The process takes nine to twelve months, and even if we decide that we need your skills, we still won’t guarantee that you will go to the county where you have done research. But please understand that it’s extremely rare that we ever have a need for a medical anthropologist.
A more concerted engagement between anthropology and global health is needed to address the unique challenges of the Ebola outbreak. Anthropologist-physicians like Jim Kim, the current President of the World Bank, and Paul Farmer, who is opening four new hospitals in Liberia as I write, are both closely involved with the Ebola response in their capacities with the World Bank and Partners in Health. Other African and Western anthropologists have been hired singly, or on a consultancy basis, to bring an anthropological perspective to World Health Organization local assessments and MSF activities in Liberia. Many more anthropologists of West Africa are being invited to write commentaries on the current outbreak. But this does not go far enough.
In this article, I share a 10-point list of actions that anthropologists could take, right now, to improve the global response to the West African Ebola outbreak. Take notice, global health and national and international biosecurity communities. There exists an entire discipline of anthropology that is dedicated to connecting the global and the local, to understanding and mapping populations in crisis, and serve as interlocutors between international institutions and local populations in this region.
1. Anthropologists can teach epidemiologists how to count the dead in West Africa. It is common knowledge that there is an enormous gap between counted Ebola deaths and actual deaths. In the space between, critical intelligence is lost concerning the patterning, movement, and expansion of the epidemic. Cultural anthropologists routinely work with local institutions to track morbidity and mortality in contexts that lack formal birth and death registration systems, public health infrastructures, or modern industrial burial industries. Two examples come to mind:
- In her ethnographic work on infant starvation in Bom Jesus, Brazil, Nancy Sheper-Hughes counted child-sized coffins to gather data on seasonal infant mortality related to malnutrition, starvation, opportunistic infections, and diarrheal diseases.
- In a forthcoming publication, Alex de Waal triangulated data on lethal mortality in the Darfur region of Sudan (tribal reports, UN mission reports, and UN incident reports) to generate improved analyses of lethal mortality patterns (see also de Waal 2014).
Novel ways of tracking the toll of Ebola can be generated quickly using ethnographic methods to collect data. But new partnerships between anthropology and epidemiology – and a greater tolerance for multi-disciplinary collaboration – are required to proceed.
2. Anthropologists can systematically observe, report on, interpret, and explain local perspectives on the Ebola epidemic response. This is the most expected function of anthropologists, and it is, indeed, the function for which we are most often employed. In order to get past distorting reports of unreasonable local populations, disinterested local medical professionals, and “blaming the system,” anthropologists are able to make sense of local ideas, beliefs, and behaviors in ways that are actionable. Three examples suggest themselves:
- When residents of West Point, the Monrovia, Liberia ghetto, are told not to touch the bodies or corpses of individuals who have shown symptoms of Ebola, is it acceptable for them to use cheap plastic market bags instead of latex gloves?
- How can a neighborhood-based quarantine systems work in a way that doesn’t increase local contagious risk?
- What are the financial costs to poor populations who are asked to call in to Ebola hotlines, and are those costs bearable under current conditions of food shortages and economic crises? If the costs are not bearable, what communication systems can be put into place to facilitate “ground-up” communication with regional, national, and international systems
3. Anthropologists can detect emerging health risks in the “noise” around Ebola. Consider the following: On September 12th, the WHO reported that a black market had emerged for Ebola survivor’s serum. Anthropologists have developed sophisticated ethnographic approaches to track black market flows, and are skilled at making visible invisible connections between donors and dealers, buyers and healers. We can also work in partnership with local institutions to seek out emerging public health threats that are arising in concert with Ebola, and craft swift and effective responses.
4. Anthropologists can identify local health capabilities and latent social structural capacities for emergent Ebola responses. As #3 suggests, the people who live in Ebola affected regions of West Africa are tremendously innovative and inventive. In fact, one of the most extraordinary outcomes of this current epidemic has been the resilience of local populations under extreme systemic stress and perceived mortal threat. Rather than focusing on “culturalist” issues like Ebola-denialism, funerary practices, news of violence against aid workers, and labor strikes, anthropologists are sensitive to the fact that the populations in Ebola-affected regions are, in fact, human, and that they are inventive, adaptive, able to respond to impending threats in their environments, and deeply clannish – they love, they provide care, and they are, above all, concerned with the well-being of their families and communities.
For example, ethnographer, religion scholar, and development consultant Gwen Heaner noted in a recent personal communication that Pentecostal and Seventh-Day Adventist networks of pastors in Liberia remain untapped as potent allies in the fight against Ebola, while the CDC has already reached out to mainstream churches. At the same time, Pentecostal and Seventh-Day Adventist pastors are implementing strict protections against Ebola by banning touching during church activities. They support their actions with the New Testament verse 1 Timothy 5:22: “Do not lay hands upon anyone too hastily and thereby share responsibility for the sins of others; keep yourself free from sin.”
5. Anthropologists can convene university-based multi-disciplinary study groups that include undergraduate students, graduate students, and faculty to track the epidemic in real time, focusing on the sociological, economic, political, and cultural aspects of the outbreak. These groups can serve as sites for education and advocacy, fundraising, original research, and coordination in local communities across Europe and the United States. Using very few resources, they can serve as clearinghouses that link scholars with prior experiences of Ebola (e.g., Uganda, Democratic Republic of the Congo) or other epidemic containment efforts with academics and practitioners who are involved in the current effort.
6. Anthropologists can share their networks of local contacts with global health experts who are trying to coordinate a response. Anthropologists who work in coordination with local communities often have close, long-term personal and professional relationships with research assistants, community members, and private and public sector leaders. Increasingly, it appears as though a coordinated local response will be required to slow the pace of the epidemic. In sharing our networks informants, friends, and colleagues with local health professionals and international aid organizations, we can facilitate the development of bi-directional communication across local, national, and international institutions.
7. Anthropologists can provide training, coordination, and qualitative data analysis to support to local Liberian, Sierra Leonean, and Guinean teams who try to use local information to design effective interventions. Much of the social and cultural analysis that has emerged from the Ebola epidemic has been fragmented, anecdotal, and sensationalized. This need not be the case. Working remotely from academic centers in the West, anthropologists can work in collaboration with local research teams based in NGOs, at Ministries of Health, and with the WHO to systematically gather, analyze, and report upon real-time data regarding the social and cultural conditions that are impacting the Ebola outbreak. This information can then be factored into real-time decisions about public health strategies like mass communication campaigns, treatment center access, infrastructure development priorities, staffing allocations, and material and human resource investments.
8. Anthropologists can take the lead in generating innovative solutions to the global health community’s mass health communication challenges. As a community, we can come together to publicly “brainstorm” strategies and interventions. We can offer counter-interpretations of current events, alternative readings of histories, and refined analyses of systems challenges in order to more precisely isolate actionable areas for improving the Ebola response. Under the rubric of the AAA, we can organize a National Task Force on Ebola, create opportunities for scholarly exchange, debate, and reports through the coming AAA conference, and use the AAA national platform to maximally engage national anthropological resources.
9. Anthropologists, especially through the leadership of the American Anthropological Association, the European Association of Social Anthropologists, or the World Council of Anthropological Associations, can advocate more strenuously for a “seat at the table” for the social sciences to contribute to the Ebola effort. As individuals and as an Association, anthropologists can reach out to our colleagues in government, public policy, public health, and medicine to remind them of the unique social and cultural challenges that Ebola poses, and identify missed opportunities that have resulted from failing to integrate the social sciences into a truly robust, multi-disciplinary response. A far more sophisticated understanding and operationalization of culture and human subjectivity needs to be integrated at every level into the global response to this epidemic, or – as current projections suggest – the possible human toll will rival those of genocides. Present approaches are failing, and the current devastation of the economic and medical systems in these countries, and the existential threat confronting their national food security, emerging economies, and post-conflict democratic political systems, needs to be monitored and responded to as carefully as the growing case counts reported daily in the international media.
10. Anthropologists in the U.S. can increase pressure on Congress to provide funding for NSF RAPID Research Grants for Ebola research, and for all other basic social science research that seeks to engage with real-time emergencies. Presently, in the United States, there are few robust mechanisms for funding emergency anthropological research, or partnerships between anthropologists and other disciplines, in order to address critical human health issues. NSF RAPID Research Grants are an exception. These grants are designed to bypass a lengthy process of external review in order to facilitate the accelerated development of research projects in emergency situations. Within NSF’s cultural anthropology section, however, NSF RAPID Research Grants are funded in the same pool as conventional NSF senior, NSF CAREER, and graduate student dissertation (DDIG) proposals. A dedicated funding line should be established that commits national resources to rapidly drawing upon anthropological knowledge and research in global emergencies at the NSF, at the CDC, and in the Department of Homeland Security. Moreover, anthropologists should be encouraged to draw upon all of the resources that can facilitate their research in affected regions.Sharon Abramowitz is an assistant professor of anthropology and African Studies at the University of Florida. She is the author of Searching for Normal in the Wake of the Liberian War (University of Pennsylvania Press 2014) and co-editor, with Catherine Panter-Brick, of Medical Humanitarianism: Ethnographies of Practice (University of Pennsylvania Press 2015). She served as a Peace Corps volunteer in Cote d’Ivoire from 2000-2002, and has been working on mental illness, gender-based violence, post-conflict reconstruction, humanitarian intervention, and post-war health system transitions in Guinea and Liberia since 2003.
This piece was reviewed, and greatly improved, by Lauren Carruth, Gwen Heaner, Michael Herzfeld, Arthur Kleinman, Emily Mendenhall, Sarah McKune, Mary Moran, and Noelle Sullivan. Thanks, as always, for your generous comments and keen insights.
de Waal, Alex, Chad Hazlett, Christian Davenport, and Joshua Kennedy. “The epidemiology of lethal violence in Darfur: using micro-data to explore complex patterns of ongoing armed conflict.” Social Science & Medicine (2014).
Scheper-Hughes, Nancy. Death without weeping: The violence of everyday life in Brazil. Univ of California Press, 1993.
 In forthcoming edited volume Abramowitz. S. and C. Panter-Brick, Eds. (2015) Medical Humanitarianism: Ethnographies of Practice. University of Pennsylvania Press.