Conference Report: The Humanization of Health Sciences through Innovation in Health Professions Education by Thomas Cousins
Brocher Foundation, May 2016
This three-day event took place at the Brocher Foundation Institute, Geneva, from May 17-20 2016, and was generously funded by a Brocher Foundation award. The organising team included Berna Gerber, Thomas Cousins, and Lizahn Cloete (Stellenbosch University), Megan Wainwright (University of Cape Town), Michelle Pentecost (University of Oxford), Ferdinand Mukumbang (University of the Western Cape) and Guddi Singh (Medact, UK).
Just down the road from the Villa Diodati where 200 years of Shelley’s Frankenstein was being commemorated (“a mythic expression of the anxieties of a world confronted with the growing power of science and technology”), a group of 25 scholars gathered at the Fondation Brocher. We had reason to consider anew the ways in which humanities and medicine might be reconciled, learned, and applied in ex-centric contexts between the global south and north, where distinctions between war and everyday life are constantly blurred. Our aim in bringing together a range of scholars from around the world and across many disciplinary — and transdisciplinary! — homes, was to consider new ways of bringing together humanities and social science knowledges with the training of health professionals.
The conversation emerged out of a network of practitioners and researchers interested in health professions education, starting at a workshop on “Building the Critical Health Social Sciences in Malmesbury, South Africa in 2015 organized by Chris Colvin (UCT) and Hayley MacGregor (Sussex), and taken forward at a second meeting with colleagues from around South Africa in March 2016 at the University of Stellenbosch. The Geneva conference covered three broad themes: (1) Health Sciences Curricula in Practice: Experiences of Teaching and Learning; (2) Critical theory and new pedagogies and (3) Praxis and theory: towards integration.
For an overview, links to the program, and speakers’ abstracts and biographies, see the report by our colleagues Megan Wainwright, Lizahn Cloete and Ferdinand Mukumbang.
In this conference report, we want to draw out some key reflections from the event that we consider to have application for medical anthropology, science and technology studies, cultural psychiatry, psychology and bioethics, beyond the remit of the conference focus.
‘Humanising the health sciences’: old wine in new bottles?
While this conference built on an established scholarship in health sciences education, medical humanities and critical pedagogies, it nevertheless made some important departures. The organisers’ deliberately provocative title about “humanizing” thrust the group into early debates on the notion of “humanisation” and the various social and political logics it brings with it, not to mention the wide divergence between meanings of “humanisation” across various national and local contexts, and the possible objects of “humanisation”: care, physicians, their training, or critical thinkers.
A critical humanisation?
A strong theme of many contributions concerned what we might call a critical orientation towards our own normativities. In the ‘chasm between theory and practice’, as Iona Heath put it, what is taken for granted? As Rolf Ahlzen eloquently reminded us, there is an ethic inherent to clinical practice: that the health professional must of necessity objectify the physical body, but that he must ultimately return from this ‘ontological excursion’ to situate the patient back in his or her person and societal context. As such the biomedical encounter is inherently paradoxical: the clinician must grapple with ‘biology and biography.’ Further, practitioners’ own biographies and biologies impact on their pedagogy. For example, Lizahn Cloete discussed how training occupational therapy students about disability without experiential knowledge presents a limit to teaching.
Simon Forrest, describing his experiences with teaching sociology in undergraduate medical education at Durham, suggested that in place of an evangelical passion for “humanisation”, we should be making a stronger moral and political case in our training of health professionals, by exploring the social dimensions of health through situated examples (see also the UK network of Behavioural and Social Scientists Teaching in medicine BeSST, which is creating a core curriculum in Medical Sociology). Jill Gordon‘s take, drawing on her work at the University of Newcastle (Australia) in supporting Aboriginal and Torres Strait islanders’ physician training, was founded on an appreciation of the “client and extra-therapeutic factors” that so crucially shape health outcomes (instead of an assumption about the efficacy of medical techniques or specific therapies). Berna Gerber, chair of speech therapy at Stellenbosch University, described using her education in philosophy to open up communication and clinical judgement as vital dimensions of “humanisation” in working with health professionals. “Philosophy” as a clinical practice, then, might be a way to think of medicine less as a science (its own self-image) and more as a science-using practice of caring for the sick.
Caroline Hodge, a medical student at UCSF with a background in medical anthropology, described the marginal status of social science in the medical curriculum in California, but spoke up the positive possibilities that come from such marginality, such as student-led electives which can offer potent spaces for alternative narratives in the context of institutional investments in outcomes- and evidence-based approaches. Lizahn Cloete spoke powerfully about using Paolo Freire’s ideas in occupational therapy in support of prevention-oriented approaches to more integrated interventions for Foetal Alcohol Syndrome in South Africa. Megan Wainwright’s careful thinking through of the problem of addition versus integration of humanities and social sciences into health sciences education provided strong material that brought together many of the participants’ concerns from other contexts. One succinct intervention was to ask whether students should not be taught to read more, but to read better. Jane Macnaughton questioned the rationale that health professions education should be “humanised” in terms of the content that is taught, and made a case for a more experimental approach to education that allows for non-quantifiable processes and outcomes in the “processes of becoming” that unfold between patients and healers. Rather than devising new content for curricula, she suggested, we should be thinking about new kinds of research and modeling new orientations and relations in the practice of healing.
If these conversations sound to some readers like reinventing the wheel, it might indicate the necessary (re)turning and re-thinking that the politics of ill-being presents to established modes of thinking, teaching, and writing. Some suggested we take forward alternative conceptions of care, evidence, and the specificity of “context”; how this might translate into institutional practices of training across disciplines animated our debate.
By the end, the ‘humanisation’ of health sciences appeared less obvious as an endeavour than when we had started, producing more questions and challenges than solutions or answers.
Humanising health sciences in the North and the South
Experiences and material from South Africa, Iraq, Lebanon, Australia, Brazil, the UK, USA, and Canada, were exchanged and digested, prompting a set of debates about the circulations of biomedicine and its pedagogies between the global South and North. Margaret Lock’s assertion that ‘all medical knowledge and practice is historically and culturally constructed and embedded in political economies, and further, [is] subject to continual transformation both locally and globally’ (2008: 480) offers a useful starting point. What do the various health professions look like in each of these particular social and clinical conditions? How does the education of health professionals in these regions diverge in their clinical ambition or social or political grounding? Do these particularities affect biomedicine’s epistemologies across these contexts? It’s one thing to recognise that many Northern contexts increasingly resemble the Third World (see Meyers and Rose Hunt  on “the other Global South”), or that privileged elites the world over enjoy first class health care; it’s another to think how those inversions might shape health professions training in Nigeria, Iraq, South Africa, or the USA. How does pedagogy navigate those transformations, or traverse these locales? For example, Seth Holmes spoke about American students who do not feel that learning about health issues elsewhere is relevant to those who will only practice in the US, while Michelle Pentecost and Thomas Cousins described how for South African medical students, the humanitarian crisis is often thought of as ‘out there’ in Africa. Do such political geographies matter for how we think of social sciences and humanities in relation to health professions and their pedagogies? Given that the global workforce in health care is highly mobile, how might new generations of students frame ethics of care and local responsiveness? Producing knowledge and the path to healing are not merely the preserve of labs, clinics, or classrooms in the North, but are redistributed through actually existing techniques and practices in many ex-centric locations.
Notions of humanity: conflict medicine and decolonisation
Omar Dewachi and Vinh-Kim Nguyen, in their presentations and discussions, focused attention on the need to redefine our framings of medical practice in a time when there is increasing ambiguity on what constitutes war or peace (Dewachi 2015, Dewachi et al 2014; see also Benton and Atshan 2016). While the impossibilities and devastations that war in the Middle East presents to health and wellbeing might appear radically opposed to medical practice in peaceful contexts, whether Southern or Northern, it emerged that there are many points of convergence in health professionals’ experience between, for example, informal settlements in South Africa, and war-time Iraq: violent trauma, stock-outs, and the effort to reconstitute norms and lives, bring easy notions of ‘conflict’ into question. These tensions offer new ways of thinking about the ordinary and the everyday in the context(s) of conflict medicine. Nurses, doctors, and other health professionals must bear the contradictions of the contexts in which they work. The 2016 junior doctors’ strike in the UK raised the question of conscience/conscientization: when does the practice of health care necessitate or eventuate an activist politics that exceeds the clinic? In South Africa, the question of ‘activism’ and ‘politics’ are never far from the surface in debates over health systems, resource allocation, and staff retention. Related to this is the question of how increasingly privatised models of care impact on different regions, and how this comes to bear on the way that health-care professionals ‘self-make’ in their vocations, and how this contrasts with the humanist concern that traditionally animates the subjectivities and techniques of the self called for by medical training. Similarly, the difficulty of publishing qualitative research in medical journals, and the frequent exclusion of qualitative questions and evidence in guideline development, means that patients’ voices and experience are lost to science and thus to improving clinical practice (Wainwright & Macnaughton 2013). If hierarchies of knowledge are to include patients’ experiences and other ways of knowing, is this shift to be effected through education or a broader culture change?
Pedagogically, we need to consider how concerns with inequality and social justice in health professions training articulate with students’ expectations of their responsibilities as health care workers. What might “politics” and “conscientisation” mean in engagements with “the curriculum”? How should we think, speak, and act across and between the various locales of our experience/expertise, both South and North, in the classroom or clinic or beyond it? What would it mean to “decolonise” medical curricula, amidst calls for “humanisation”? One response to these questions was the strong call to continually historicise biomedicine and medical practice, which can in turn reveal what present global circumstances mean for health, health care and healing.
Far from simply returning to an established conversation about the place of the humanities and social sciences in health science education, this conference brought old questions to bear on the contemporary moment in which we find ourselves trying to educate young health professionals. What was remarkable about the workshop was the way in which practice and experience were reflected on carefully, and how the philosophical and political implications of the concepts at stake could be explored. In addition, the combination of scholars from the South and North, emerging and more established scholars, humanities, social sciences, and clinical work, made for an energising and rewarding set of conversations.
Benton, A and Atshan, S. 2016. “Even War has Rules”: On Medical Neutrality and Legitimate Non-violence. Special Issue: The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. Culture, Medicine, and Psychiatry 40 (2): 151–158.
Dewachi, O. 2015. Blurred lines: Warfare and health care. Medicine Anthropology Theory. 8 July 2015.
Dewachi, O, Mac Skelton, Vinh-Kim Nguyen, Fouad M Fouad, Ghassan Abu Sitta, Zeina Maasri, Rita Giacaman. 2014. Changing therapeutic geographies of the Iraqi and Syrian wars. The Lancet 383 (9915): 449–457.
Meyers, T and Rose Hunt, N. 2014. The other global South. The Lancet 384 (9958): 1921–1922.
Lock, M. 2001. The tempering of medical anthropology: troubling natural categories. Medical Anthropology Quarterly, 15(4): 478-92.
Wainwright, M & Macnaughton, J. (2013). Is a qualitative perspective missing from COPD guidelines? The Lancet Respiratory Medicine, 1(6), 441-442.
When the international teams began closing the Ebola Treatment Centres (ETCs) in Sierra Leone, Liberia and Guinea this signalled the end of Ebola for many people. As researchers, NGO employees, and an array of personnel from across the globe said their good-byes to local staff, packed their bags, checked out of their hotel rooms and flew home, reflections on their experiences began filling the pages of academic journals and news outlets. Their discussion of Ebola in the past tense, as something that happened and that was, was underscored by international agencies declaring that affected countries were ‘Ebola free’, and Ebola was at an ‘end’.
There are however, exceptions in the narratives of Ebola as something that was. These are found in the accounts of those who lost loved ones and who continue to grieve, as well as those who form part of national infrastructures still struggling from disruption and massive loss of lives. These accounts, visible throughout the outbreak, are still being captured across a range of disciplines. In contrast, the accounts of local staff and volunteers who worked tirelessly at ETCs to help fight their country’s battle with Ebola are barely visible. Yet, it is precisely their stories that provide some of the most valuable insights into how the social, economic, and psychological effects of Ebola continue despite the political and humanitarian rhetoric pronouncing its end.
One of the most dominant images of the most recent Ebola outbreak has been of a figure, disguised by a white contamination suit, carrying a dead body. At the beginning of the outbreak bodies were committed to burial grounds but soon the number of deaths, coupled with the increased risk of contagion, necessitated a different approach, and the number of cremations began to rise.
The many volunteers, with no previous experience of working in health care, found themselves doing the most high-risk jobs of cleaning and disposing of the blood, vomit, and bodily waste of Ebola victims. They were also working around the clock in crematoriums in the incredibly high temperatures needed to burn the bodies of thousands of men, women and children. They worked tirelessly to cremate bodies in their own communities; knowing fully that in these communities cremation is a longstanding taboo.
Some of these local staff gave up paid employment to help in the humanitarian crisis. For the unemployed, the outbreak held the possibility of assisting in the humanitarian effort and also a proved relatively lucrative opportunity, albeit a dangerous one, to secure paid employment. In the context of high rates of unemployment and scarce opportunities to be involved in meaningful work, the opening of the ETCs with promises of compensation, training, professional recognition and certificates coupled with the possibility of securing long-term employment after the outbreak, proved a powerful motivation. For instance, in Liberia contracts were negotiated and then written promising local staff an ‘incentive package’ in the region of $250 USD per month. After the outbreak, if they survived, they would receive $2,500. If they died their families would be given $5,000. To put these figures in context, the average civil servant in Liberia earns approximately $125 per month. Others without formal employment live on less than a dollar per day.
Ultimately, very few local staff received anything close to the amount they were promised, and some have gained no compensation at all. The families of the deceased staff members, with their depleted emotional and economic resources are forced to try and dig further into their reserves as they continue to seek compensation for their loved ones who gave up their lives helping others.
For those who survived, the struggle continues to try and gain something of what they have been promised through ongoing court cases and sporadic protests. In Sierra Leone, during the outbreak, many local ETC staff went on strike for not being paid the risk compensation promised to them by the government. The presence of international staff and foreign organisations provided local staff with some leverage in gaining international media attention in their negotiations with their own government. But now, for many of these international staff, the battle with Ebola is over. They have received recognition in the form of promotions, accolades, and publications for their efforts. Moreover, many take pride in the work that they have done.
Yet what remains and continues of Ebola among the local staff is much more than a list of financial grievances. Many of the ‘cremation boys’ as they have come to be known, stigmatised and often traumatised by their work, have gone into hiding and rarely disclose their experience to others. Other local staff having witnessed scores of deaths including those of family, friends and colleagues, continue to try and make a life, gain recognition, employment, and subsistence.
This blog is part of ongoing research funded by the Wellcome Trust Society and Ethics funding stream (Grant number 108769/Z/15/). We would like to thank all those who have contributed to the account presented here.
Patricia Kingori, PhD, is a Wellcome Trust Biomedical Society and Ethics Fellow at the Ethox Centre, University of Oxford. Her disciplinary background is in Medical Sociology and her current interests research interests lie at the intersect of sociology of science and medicine and a critical examination of ethics with a particular interest in the frontline practitioners of medical research, the politics of health and what research and guidelines come to mean in practice.
Catherine McGowan is research fellow at the London School of Hygiene and Tropical Medicine, in the department of Social and Environmental Health Research.
The decade has been conceptually rich for anthropologists. From multi-species ethnography to the practice of care, the past several years have seen a flourish of analytical concepts and theoretical preoccupations. Two key developments among these emergent and often-interlinked topics are anthropology’s focus on international humanitarianism and the Anthropocene. To date these two important research streams have not been linked. This seems destined to change, since the questions that underlie the anthropological study of humanitarianism—fundamental questions about our moral and political stance towards human life—overlap considerably with the central preoccupations of the Anthropocene debate—which asks what future forms life and politics will take on this planet. This short reflection hopes to encourage the discussion.
In its most defuse form humanitarianism is an ethos: the insistence that all people are fundamentally alike and thus deserve a certain equity of consideration. The concept of humanity implies a certain biological sameness, but also moral equality (Fassin 2012:1-17). Thus humanitarian discourse simultaneously universalizes and essentializes. It insists that—in our biological needs, our ability to feel pain, to suffer and to hope—we are all alike. Because we are all subject to the same vagaries of time and trauma the very fact of being human merits dignity and respect. Since we are all united in our weaknesses, certain elementary levels of substance—freedom from starvation, or arbitrary dislocation or death—should be guaranteed to all humans. People should not be instrumentalized, made tools of others’ selfish pursuits. Humans have a basic duty of care to other humans, especially in times of extremity. These are moral prescriptions, but they have the character of fact; in the present day the humanitarian argument is so pervasive that it seems axiomatic.
Humanitarianism is a noble sentiment, but makes for a difficult practice. When put into action, humanitarian ideals become a form of operationalized compassion. In more contemporary, professionalized form, humanitarian action constitutes an industrialized response to suffering. The same tools and techniques that power global capitalism also enable humanitarian action: transnational supply chains, administration, media and communications mobilize personnel and materials to far away places. While the international aid industry is small by comparison to other large-scale industrial complexes, it is a multi-billion dollar industry nevertheless. From charitable beginnings, global humanitarian action has undergone a process of professionalization. In the face of institutionalization, the welter of need and the surge of so many bodies, the original motivation—to care for people united in their ability to suffer—is obscured; a numerical or biopolitical definition of life takes over. Much of the anthropological literature on humanitarianism highlights how the philosophy and practice are simultaneously products of, responses to, and exacerbated by the globalized, post-colonial condition.
Where the anthropology of humanitarianism shows how the concept of compassion for “humanity” is enacted in different spaces and times, the Anthropocene forces us to view humanity in relation to space and time itself. Just as our individual actions influence the lives of others and our local environment, our collective and historical human activity affects the life course of the planet as a whole. Humanity is a force of nature. In making this explicit, the Anthropocene has been characterized as a destruction of dualisms, a concept that renders long-standing theoretical divides—such as nature/culture, modern/non-modern, human/non-human—if not demonstrably false, then at least not fit for analytical purpose (Sanders & Hall 2015). The Anthropocene highlights the fallacy of society as an imagined world apart from nature, and the natural, geological world as a force outside social and cultural influence. It spells the end of Natural History, as culture itself is recognized as a geological force.
At this point, commonalities and differences become apparent. In some ways, humanitarianism and the Anthropocene are natural partners. Both place humans at the centre of the action. They are firmly anthropocentric. The two concepts also draw attention to the interconnectedness of people, to notions that care and stewardship are essential duties of individuals and humanity as a whole. In this way they are entirely deterritorialized projects: everywhere and nowhere at once; there is no part of the planet where humans are not humans, or where the effects of the Anthropocene do not reach.
In other ways, humanitarianism and the Anthropocene may seem opposed. Contemporary humanitarian action puts human welfare—a circumscribed, biological version of welfare—as its foremost goal. By contrast the Anthropocene is about planetary welfare, or (if “welfare” is too anthropocentric a concept) at least about understanding humanity as a force that impacts planetary equilibrium.
In the most brutal formulation, humanitarianism is bad for the planet. Its stubborn insistence on prolonging marginal lives produces surplus population. It achieves this through consumption of resource-intensive products of global industrial capitalism. No one has estimated the net carbon footprint of the humanitarian aid industry, but it likely rivals that of similar multi-billion dollar globalist enterprises. The aid industry accounts annually for hundreds of thousands of flights of hundreds of millions of kilometres, as managers, medics, consultants and media jet to all corners of the map. The industry’s iconic white LandCruisers—which daily ply disaster zones by the thousands—get around 12km to the litre. This is to say nothing of the diesel generators, the air-conditioned offices, transnational shipping, mounds of medical waste, and the home comforts, such as tinned food and drink, airlifted to expats in remote postings.
To phrase a critique in such blunt terms is not to argue against the humanitarian enterprise. Nor is it to argue that some lives are not worth saving. It is to call attention to the manner in which practices intended to foster welfare are themselves entwined in practices that exacerbate existing perils. It is also to illustrate how, (after a short period of unfashionablity), a certain dualistic moral calculus is resurgent: one that frames human wellbeing as subordinate to political exigency and public finance. This is a calculus that pits individual life and liberty against collective interest—when that interest is framed in terms of the nation state or, increasingly, the planet. It is a calculus highly visible today in discourses over migration and asylum. It will only become more prominent as the Anthropocene advances.
Thus anthropologists of humanitarianism have much to exchange with scholars of the Anthropocene. The humanitarian ethos calls for us to address people in crisis. It is a call that resonates deeply in our own lives, in part because, as Latour has noted (2014), to live on planet earth at the time of the Anthropocene is to live life in crisis.
Darryl Stellmach is a Postdoctoral Researcher in Medical Anthropology, Food and Nutrition Security at the University of Sydney. In 2014, for his doctoral research at the University of Oxford, he undertook an ethnography of aid agency response to the South Sudan conflict. Prior to his studies Darryl spent ten years as a humanitarian aid worker.
Dr. Sverre Molland is a lecturer in Anthropology and Development Studies at the Australian National University. His research explores the intersection of development, security and migration in Southeast Asia.
Fassin, D., 2012. Humanitarian Reason: A Moral History of the Present. University of California Press.
Latour, B., 2014. Anthropology at the time of the Anthropocene—A personal view of what is to be studied, in: Distinguished Lecture Delivered at the American Anthropological Association Annual Meeting, Washington.
Sanders, T., Hall, E.F., 2015. Anthropologies #21: Is There Hope for an Anthropocene Anthropology? [WWW Document]. Savage Minds. http://savageminds.org/2015/09/05/anthropologies-21-is-there-hope-for-an-anthropocene-anthropology/ (accessed 7.27.16).
The Limits of Rations and Cash for Food Programs: Food Related Illness in The Gihembe Refugee Camp by Emily A. Lynch
An elderly woman, whom I will call Mama Solange, walks the narrow, muddy pathway between her home and the neighbors compound in the refugee camp. She takes me for a humanitarian aid worker, or perhaps just for someone new to direct her complaints. Cupping maize in her outstretched hands, she looks at me, shakes her head silently and spits to the ground at her feet. Stretching her arms outward, away from her chest, she raises her hands high up in the air, and names God. A small crowd is gathering as she continues to cry out, and it is unclear if Mama Solange is blaming the heavens for the poor quality maize she holds in her hands and shows me, or if she is asking God to hold someone accountable for her allotted food and corresponding illnesses, or if she is pleading for urgent help. One fast fluid movement later, she freezes and stares at the audience in front of her and then re-creates the sounds of explosive, gassy diarrhea. Her gestures are punctuated as she tucks her stomach in, crouching now at her knees and swaying her hips, she spits at the earth in front of us.
Her movements intensify and she grows louder, recycling the original physical repetition: her outstretched arms to the skies and God; her hands filled with maize kernels; then into a posture emulating intestinal distress and sickness. The surrounding young children applaud and giggle, giddy from Mama Solange’s bold bodily performance to a non-camp resident and her narration of the perilous food rations. As her audience, we all watch closely, tracing the movements of her yellow eyes and aged body. Without speaking a word to us, she finishes, slowly releasing us from her intense gaze, and silently enters her house of mud and plastic. The door slams shut. The performance is over and the children scatter.
This narrative is about chronic hunger and the sickness stemming from food deficiencies for Congolese refugees in the Gihembe camp of Rwanda. While recent attention in public culture to statelessness emphasizes new crises, especially in the Syrian context, most of the world’s refugees live in camps for years on end without the ability to permanently move outside them. Gihembe camp is one among many long-term sites administered by the United Nations High Commission for Refugees (UNHCR). From its inception in 1997, refugees have expressed how inadequate food supplies really are, and that food rations are too damaged to eat. Mama Solange’s performance – featuring the sounds of digestive sickness and chronic diarrhea – communicates the bodily terrors of eating World Food Program (WFP) rations. Later I learn that she, along with many others, routinely appeals to the humanitarian apparatus – after nineteen years of living in this particular camp – for adaptations in what foods can be awarded and are needed to promote health. This article centers the absence of enough clean food and the effects of what food there is on people who are stuck living in the Gihembe camp. Camp residents are given maize and beans festering with weevils, moistened with a slow decaying rot and an accompanying stench. While this food rarely kills, it creates routinely unpleasant, ordinary sickness and bodily harm. This is the reality Mama Solange describes and most other refugees know as they, too, cup the damaged and hazardous foods in their palms and wonder how sick it might make them.
Despite this, everyone in the camp accepts the rations. Everyone, including the humanitarians, recognizes the bodily consequences and the experience of chronic hunger. Yet, the WFP ration distribution center operates physically alongside the malnutrition center. Tucked behind the gates defining a perimeter stands a small concrete building and a roofed outdoor kitchen. There is no sign or indication that this is the location where especially sick refugees are taken care of. On many days when I visit, it is empty. There is no one there, refugees nor humanitarian workers. The main room contains empty and unused beds lined up in tidy rows. The cots are sparse, not equipped with a pad or a mattress or a blanket, but a bare surface, nondescript. The adjacent doorway leads outside into the open shelter where a tin rooftop covers a large fire pit. Nothing and no one is there either, but a few spoiled cabbages lingering beside some ashes. At a site where there are so many food deficiencies and food related illnesses, how is the malnutrition center empty? Where was everyone? How does the UNHCR or the WFP justify or explain how their food supplies damage human bodies and inflict sickness? How does humanitarian intervention justify and reconcile insufficient food rations with the simultaneous need for camp centers to treat those suffering from the lack of quality food?
During my ethnographic fieldwork, humanitarian health workers claimed that only when there are multiple children who come into the center fatigued, with colds or flu-like symptoms, or with diarrhea and vomiting, do they tally the number of these cases. In the days that follow the children’s initial visit to the malnutrition center, health workers also invite the mothers to return and attend the center. Workers and refugees alike told me that sometimes if the mother is the sickest, she can bring along a small baby, who can also be supplied with an extra protein powder, or maize porridge. These allowances are beyond the regular rations, which meagerly include: maize, beans, salt and oil. Portion sizes and their allocations are determined by a WFP rubric concerning the caloric intake needed on a daily basis to maintain a human body.
The attempts by the malnutrition center are at best humble humanitarian efforts to correct a mutually well-known problem: there is not enough food, and especially insufficient amounts of clean food. The logistics are fraught: food shipments have been damaged by rain from long transit routes across multiple countries, and independent farmers secretly and illegally swap out their rotting food with the clean food on the transit trucks. Distribution is a more wretched situation: to qualify for extra food rations, or sachets of SOSOMA, an enriched porridge flour, camp residents must prove how desperate their bodies are, and beg to the Gods or to a non-camp resident, like Mama Solange did that day. Under the supervision of the UNHCR and its partners, additional food programs are created for those living with HIV, or for the children whose wrists and ankles are examined for their circumferences and then assessed using another rubric for malnourishment.
In my relationships with refugees, people commonly reference kwashiorkor: a form of malnutrition related to protein deficiency. Milk, eggs, or other vitamin rich foods are so scarce they are impossibly expensive goods to regularly purchase, even if they are available. And then, if refugees are somehow able to purchase a chicken or a goat, the feed, tools and materials required to maintain these animals are still further out of reach for camp dwellers, either because they do not exist or they are in turn too expensive. The upshot is that protein deficiency is rampant. So, working within stark material means, children with severe kwashiorkor will turn red and their hair takes on an amber glow. In the worst cases, their hair will even become straight, “like the white people’s!” refugees exclaim, emphasizing how unnatural and unhealthy such a feature is on their children. Refugees know all too well the indicators of malnutrition: a child’s ankles, cheeks, and bellies will puff out, giving the illusion of health, or even of excess weight, until all the other bodily indicators of sickness are put together and the doctors notice how large a child’s head is relative to her body, and the degree of swollen body parts against her fragile skeletal frame. Unsurprisingly, many children in Gihembe are much smaller than healthier, better-fed children of the same age across the globe.
Refugees and I frequently discussed additional indications of other food-related failures and the often embarrassing signs of the constant challenges of camp life. In the residential camp quarters, older children commonly cut their smaller siblings’ hair. As they do, they try to rub off the scaly patches of fungus that grow on the surface of the scalp. It is rough and whitish, and does not just wash off with water or soap. It is nearly ubiquitous to the younger children in the camp, though a few luckier children sometimes have small amounts of cream lotion or Vaseline, which although it does not remove or kill the fungus, at least diminishes its outward appearance. Refugees and the health experts in the camp do not know what causes it, besides malnutrition and “the bad life.” The life then, is an embodied condition, but not a disease or something else which can be sharply medicalized or easily cured. Curing hunger, or malnutrition, or digestive pains cannot be separated easily from the overwhelming number of problems in camp dwelling and administration. There are no easy remedies to improving the camp, but refugees commonly relay that the “real solution,” to their current dilemmas is to return home to North Kivu in The Democratic Republic of Congo and to resume their old lives, where “we never lacked anything.”
The cure that refugees and humanitarian workers, oddly, and equally recognize is so far removed from what is actually possible – that is: to go home, or to eat better food, or to eat more food, or to in any way live prosperously. About a year ago, the UNHCR and the WFP introduced in the camp a new pilot program called mVisa. The program emphasized food-choice and autonomy for refugees, and the camp largely supported the move to replace rations with a system of cash funds with which camp residents could independently purchase food in camp markets and from mVisa dealers. Overwhelmed by the sudden possibility of choice, a break in the monotony, and the possibility of relief from sicknesses from rations, some Gihembe camp residents excitedly endorsed and supported the pilot mVisa program. They envisioned purchasing milk and preparing meals that would always include potatoes and vegetables. One woman told me she looked forward to “missing” the children’s deposits of excrement in the residential quarters when they are unable to make the trek to the pit latrines in time without supervision. Another mother discussed how the new food program might “fix” the visible reminders of malnutrition, especially demonstrated by sick children, their runny piles of diarrhea, ruddy skin and light-colored hair. The malnutrition center might even become fully operational, after all, refugees argued, since the humanitarians would not be working as much as before coordinating and moving the sacks of undesirable, unwanted food. Despite the optimism of some refugees, there were also leaders in the camp who opposed the mVisa program in consultation meetings with the WFP food economists. This dissident group argued that there would likely not be enough cash to supply families with enough food, even though the monetary figures during the consultation period were unknown. Some intuitively knew the humanitarian group would shrink the amount of cash realistically needed by refugees in order to eat. At the end of the conversation, the refugee leaders also knew they had very little power in convincing the WFP of their concerns or of blocking the decisions made on refugees’ behalf. Ultimately, similar to many other instances of administrated camp-life whose limited goals are to improve camp management, the program was piloted, and after recent standardized assessments, adopted.
In practice, the mVisa program allots about 200 Rwandan Francs – approximately 0.27 USD – per resident per day for nutritional sustenance. Gihembe camp residents, again, tell me about how little food they have to eat. “We are still hungry, sometimes more hungry than before.” While the program’s original emphasis on flexibility and food is somehow true, the failure of the solution shows a glaring discrepancy between the amount of food refugees are able to purchase and how much they need to eat per day. In addition, the mVisa program emphasizes purchases of food, and precludes other kinds of autonomous economic exchanges that the ration system enabled. For instance, refugees previously would use the partial sale of their food rations to Rwandans to generate cash to purchase other much needed items, such as clothing, toothpaste, maxi pads and soaps. Often unable to generate alternative forms of monetary income, refugees are stuck again, but in a new way now, and still struggle to meet their everyday needs and garner basic supplies for living. Now, a close friend from the camp, Felix, saliently tells me in an explanatory tone, “We are forced to maximize the time of the money [under the mVisa system] and before, we liked having larger quantities of food more than we liked having the high quality of food.” Yet, this choice was not his to make, despite the efforts made by the group of camp leaders who speculated there would be more, albeit different problems under this new system of food allocations. Felix, and others, knew their reality would worsen from the beginning of these so-called negotiations. They had little say in what has happened with food in the camp.
Since the implementation of the mVisa program, refugees overwhelmingly believe malnutrition rates are as high as they have ever been in Gihembe, that the same illnesses abound, but that there is less excrement – or watery diarrhea – visible in the residential quarters. Their rationale: when there is less food to eat, there is less food to excrete. Refugees are constantly left pondering how to improve themselves, their lives, their health and futures. The humanitarian administration that makes decisions on their behalf fails to ask critical questions about refugees as humans, not as their subjects: Is the food quantity now better? Do fewer stomachs contain worms? Are fewer GI infections diagnosed and more treated? Is the malnutrition center regularly open and still needed?
The lived reality of Gihembe refugee camp shows how the problems are constant and the solutions imposed are, at best, ineffective. The difference between perception and experience looms large for refugees and the humanitarian order: refugees are sometimes willing, at least temporarily, to believe that camp life can improve, just as humanitarian systems posit there are “better solutions” to discover in crafting, in this instance, food allocation systems. This article tacks between food rations and cash-for-food programs to illustrate how solution-oriented thinking and programming fails repeatedly to produce less sickness, more autonomy, and a more dignified human experience in exile. For now, Gihembe camp’s hunger remains constant: as Mama Solange’s performance demonstrates, the rotten maize kernels were not refused or abandoned, nor did she release her cupped hands letting the food fall to the earth and be forfeited. Rather, she clutched her hands and kept this dark gift, careful not to beg or to offend its givers, but to take it in a sardonic desperation, one usually without an audience.
Emily A. Lynch is Assistant Professor of Anthropology in the Department of Social and Cultural Sciences at Marquette University. Her research focuses on the Great Lakes region of East Africa, specifically on forced migration, violence, and the humanitarian apparatus that serves those affected by conflict—Congolese refugees in camps in Rwanda. She is currently working on a book manuscript titled, The Dark Gift: Time and Humanitarianism in a Refugee Camp. The ethnography focuses on temporality in refugee camp contexts, vulnerability and protection, and the everyday experience of life-giving regimes.
“As Americans, we grieve…”
Mass shootings in contemporary American society have emerged as events of profound political and cultural symbolism; indeed, the news media has often attributed to them the label of “crisis.” They have a singular status in the modern American collective consciousness, one not occupied by other forms of violence. Mass shootings have attained this status, I argue, precisely because their violence transcends the immediate act itself; they are threefold acts of violence, enacted on the bodies of their victims, the minds of their witnesses (both first and secondhand), and society collectively. Through the elaborate national discourse that has been constructed around them, mass shootings have emerged as attacks on society as a whole – mass violence in the most literal of senses. Individuals become witnesses and are thus implicated in the trauma of the event; simultaneously, their personal grief is transformed into collective pain. There are four key drivers that enable this threefold victimization: first, the sense that mass shootings represent a narrative rupture; second, the personalization of a collective anxiety tracing back to 9/11; third, the modern idiom of trauma, which provides a new lens through which to understand and justify the grief reaction; and fourth, the development of new normative grief rituals, performed through social media, which serve to create a shared trauma narrative and to allow individuals to affirm their group membership and community identity in a time of flux and fragility.
Mass shootings are felt as powerfully disruptive of the everyday; they are an inappropriate disruption of not only the “contingent, unremarkable and ordinary” stream of everyday life, but also the normatively coherent, telic narrative of individual and collective life. These mass shootings, by definition, take place in public areas presumed safe, in a world presumed largely untouched by senseless violence; they “somehow seem to occur in a more poignant version of reality.” Not only does violence intrude into the most quotidian spaces in mass shootings, but it is an irrational, senseless kind of violence. The victims of mass shootings are victimized by virtue of their presence, rather than any personal quality. The lack of a coherent, understandable explanation for these events renders the lives of individuals and groups “out of control,” by introducing incoherency and ambiguity into otherwise highly structured narratives. This sense of disruption is felt all the more deeply in the context of a modern moral logic that declares certain deaths unacceptable. As technology has developed over the past decades, the umbrella of “preventable” death has widened, accompanied by a growing intolerance of risk and a sense that violent death, in a “well-ordered society,” is inappropriate. The concept of “living on,” a sense of life as a continuation of an orderly, nonviolent everyday narrative rather than as a series of events involving the dramatic exercise of agency, is best interpreted through a framework of collectivity. It is our collective living on that is most shaped by this logic, and so mass shootings are quite literally an affront to modern collective life – or, as President Obama put it after Orlando, “an attack on all of us and on the fundamental values…that define us as a country.”
This sense of “it should not happen here,” however, is accompanied by the increasing understanding that it could. Mass shootings reinforce the growing anxieties of a society that has felt increasingly beleaguered by violence in the last two decades. In particular, instability and fear entered the national narrative after 9/11 in a way more real and present than before; previously unthinkable violence became a reality, and therefore a future potential. Violent and random death at work, school, or a movie theatre has become a legitimate fear, and a rising sense of helplessness encouraged individuals to conceive of themselves as potential victims of an inevitable future mass shooting and as responsible stakeholders. Each new act of violence is incorporated into the national consciousness as a symbol of our own vulnerability, both personally and collectively. A generalized grief over loss of life becomes a deeply personal fear that the next victim could be you or someone you love. The intrusive potentiality for violence resounds on every level: collectively, we are preoccupied with these attacks, exploring them in media and shaping a group identity in resistance to the normalization of violence; individually, our sense of personal safety in public spaces has been altered; and physically, our anxieties are made manifest in graphic images of the attacks.
If 9/11 was the seminal act of violence that victimized the American public, then each mass shooting since has served as a reenactment of that trauma. It was 9/11 that marked a discursive shift to focus on the trauma of bearing witness; afterwards, as Didier Fassin and Richard Rechtman note, “both survivors and witnesses, but also television viewers and residents of the United States in general were suffering from exposure to a traumatic event.” The concept of trauma—“the tragic event and its psychological traces”—thus profoundly transforms the social construction of grief and victimhood “by applying the same psychological classification to the person who suffers violence…and the person who witnesses it.” Trauma provides a language to understand shared psychological pain and a justification of the grief response. It is the mechanism through which bystanders are implicated in the narrative of these violent events. In bearing witness, personal grief is legitimated and becomes a valid assertion of shared national suffering.
New technology has transformed the ways in which we both witness and grieve these events – and in doing so fundamentally changed their discursive significance. Because of rapid information sharing technologies like Twitter, mass shootings almost instantaneously enter cultural consciousness as “historical,” and the process of narrative construction in collective memory occurs simultaneously with the unfolding of events. This deepens affective engagements by intensifying the sense of personal involvement. However, although there is a sense of direct or unmediated involvement in the tragedy (compounded by the legitimization of the victim role through the concept of the pathogenic and trauma-inducing image), this form of communication creates highly mediated collective “trauma narratives” that are constructed collaboratively and shared memetically. In part because of their temporality, these trauma narratives shape individual perceptions of the events in accordance with their “contemporary manifestation of collective trauma in the public arena.”
These “trauma narratives” do not only include the actors directly involved in the event, however; they tell the story of the event as a cultural process, or transform the initial trauma into collective memory. It is no longer only the bare facts of the event that are recorded for posterity; rather, related but tangential narratives and details are all woven together to form a public memory of the event. Because trauma has created a victim space for viewers as well as participants, their stories have a legitimate place in the “trauma narrative.” Indeed, they have an important place: “the collective event supplies the substance of the trauma which will be articulated in individual experience; in return, individual suffering bears witness to the traumatic aspect of the collective drama.” The tragedy of the mass shooting is most fully realized in its collective witnessing. We as observers are not only enabled but also compelled to recount our personal narratives (where we were, how we were affected), and in doing so deepen the sense of a mutual, collective victimhood.
As social media has shaped the development of these narratives, so too has it informed the development of modern grief rituals, which are themselves written into the social memory of these events. Because of the perceived importance (and legitimacy) of expressing empathy, distress, and grief in the aftermath of a mass shooting, those expressions have taken on a normative social force. Publishing a written expression of grief becomes a fundamentally social act and a mark of group membership. Although these elegies are almost certainly performative in the truest sense, that is not to say that the distress articulated in Facebook statuses is necessarily or solely inauthentic—it certainly may be real and felt, and asserting it may be a means of participating in a collective palliation of suffering. Expressions of personal distress enable individuals both to take part in the communal activity of meaning-making and to assert their membership in a community. Individual pain echoes a “national victimhood…[that] manifests itself via a claim to collective identity.” This appeal to a collective identity is clear in the suggestive phrasing of President Obama’s speech after Orlando, when he stated that “as Americans, we are united in grief.” In times of flux, group membership and identity can be particularly important; here they both stem from and reaffirm the collective violence of the mass shooting.
The use of culturally scripted expressions of mourning as affirmations of identity and group membership was most poignantly evident in the aftermath of the shooting in Orlando. Participation in grief rituals through social media served as an affirmation of identity and belonging for the LGBT community. The history of the LGBT community in the US is rife with individual and collective violence at a number of levels, and the shooting in Orlando was a specific attack on a safe space – the trope of the mass shooting writ small and projected onto an already beleaguered community. The LGBT community has, in some sense, claimed ownership of this grief as a part of their continuing historical narrative, and the pain and trauma of it was felt acutely by community members. Personal narratives incorporating the pain of this tragedy thus become explicit declarations of identity and community.
These tragedies do not and cannot occur in isolation; they have entered the modern cultural consciousness as reified symbols of collective distress over our own vulnerability and fragility. The normative construction of mass shootings as a culturally specific category of events that could, but should not, disrupt the everyday life of their literal and primary victims (a role into which we are encouraged to project ourselves), of their secondary victims (those exposed to trauma through media coverage), and of the society as a collective, grants them a unique social status. Some critics have argued that the particularly intense reactions to these events are the result of racism or xenophobia – a reflection of the American public’s inability to empathize with or care about “the tragedies of other places.” While these factors clearly play a role in the shaping of mass shootings as cultural phenomena, such arguments radically oversimplify the complex relationship between contemporary American society and these forms of violence. Rather than emerging strictly from a sense of American exceptionalism, the construction of mass shootings as powerful symbols is also the consequence of a particular cultural moment that engenders the tragedies, their discursive significance, and their affective resonance simultaneously. Mass shootings emerge as a collective experience enabled by a cultural shift in perspectives on violence and enacted through social media, using the modern idiom of trauma.
Elle Nurmi completed her Masters in the Humanities at the University of Chicago in 2013. Her interests include disability rights, mental illness narratives, and the role of trauma in contemporary American society.
 Obama, Barack. (2016, June 12). Remarks by the President on Mass Shooting in Orlando. White House Office of the Press Secretary. https://www.whitehouse.gov/the-press-office/2016/06/12/remarks-president-mass-shooting-orlando
 Cf. the Guardian’s headline “1,000 mass shootings in 1,260 days: this is what America’s gun crisis looks like.” http://www.theguardian.com/us-news/ng-interactive/2015/oct/02/mass-shootings-america-gun-violence
Throughout this piece, I intend to limit the scope of the category “mass shooting” to its most commonly referenced form: a contained incident of multi-victim civilian gun violence that occurs in a public space, is perpetrated by a single shooter, and victimizes strangers apparently at random. Examples include Columbine, Aurora, Sandy Hook, and Orlando.
The intensity of the focus on mass shootings as a hallmark of American violence is, if understandable (per the argument of this article), statistically disproportionate. For example, so far in 2016, 259 people have been killed in “mass shootings” (using a generic definition of gun violence incidents with 4 or more victims – a more limited definition, as I posit above, would have a lower count); in total, there were 7,238 deaths due to gun violence. Statistics from http://www.gunviolencearchive.org, 11 July 2016.
That said, from a cultural perspective, media focus is a mere echo of social sentiment; in a recent poll, 68% of Americans listed mass shootings in the US as “very or extremely important news events.” Associated Press. (2016, December 26). Poll: Mass shootings weight on Americans in 2015. MLive. http://www.mlive.com/news/us-world/index.ssf/2015/12/post_144.html
 Biressi, Anita. (2004). “Above the Below”: Body Trauma as Spectacle in Social/Media Space. Journal for Cultural Research, 8(3), 338.
 Zakaria, Rafia. (2013, April 17). The Tragedies of Other Places. Guernica. http://www.guernicamag.com/daily/rafia-zakaria-the-tragedies-of-others/
 Stearns, Peter N. (2008). Texas and Virginia: A Bloodied Window into Changes in American Public Life. Journal of Social History, 42(2), 314.
This also ties to the ongoing shift from dramatic forms of sovereignty, which focus on life in the extremes and the ability to end life, towards what Berlant describes as a biopolitical hegemony, consisting in the authority “to regularize life, the authority to force living not just to happen but to endure and appear in particular ways.” Berlant, Lauren. (2007). Slow Death (Sovereignty, Obesity, Lateral Agency). Critical Inquiry, 33, 756.
 Obama, op. cit.
 9/11 is often explicitly referenced when discussing this sense of helplessness or defeat after mass shootings. Cf. Wright, Annie. (2016, June 13). 11 small ways to feel less helpless this week from a trained therapist. Upworthy. http://www.upworthy.com/11-small-ways-to-feel-less-helpless-this-week-from-a-trained-therapist
 In 2007, 82% of Americans said that “no matter what universities do, they would not be able to prevent shootings on campuses from happening.”
Saad, Lydia. (2007, May 2). Americans Skeptical About Preventing Virginia Tech-Like Incidents. Gallup. http://www.gallup.com/poll/27430/americans-skeptical-about-preventing-virginia-techlike-incidents.aspx
This is in stark contrast to an earlier poll in 1999, when only 43% of respondents believed that “shootings like the one in [Red Lake, Minnesota/Columbine] will happen again regardless of what action if taken by government and society.”
Newport, Frank. (2012, December 17). Newtown Shootings Context: Americans’ Attitudes Towards Gun Control. Gallup: Polling Matters. http://pollingmatters.gallup.com/2012/12/newtown-shootings-context-americans.html
The sense of personal responsibility invoked by the epidemic framing and empathetic personalization of the mass shootings is also clear in comments like: “It is no longer acceptable only to grieve. We must address the specter of violence made manifest in children’s graves.” Dr24hours. (2012, December 17). Connecticut. Infactorium. http://infactorium.com/2012/12/17/connecticut/
 Fassin, Didier and Richard Rechtman. (2009). The Empire of Trauma: An Inquiry into the Condition of Victimhood. (Rachel Gomme, trans.). Princeton: Princeton University Press. 2.
 Ibid., 4, 21.
 Ibid., 284.
 Jarvis, Lee. (2011). 9/11 Digitally Remastered? Internet Archives, Vernacular Memories and WhereWereYou.org. Journal of American Studies, 45(4), 807.
This idea of “national suffering,” the sense that mass shootings represent an assault on national identity and security, is reinforced by the growing expectation that the president involve himself in the mourning process. For further discussion, see: Heim, Joe. (2013, May 22). A growing role for the president: America’s consoler in chief. The Washington Post. http://www.washingtonpost.com/lifestyle/style/a-growing-role-for-the-president-americas-consoler-in-chief/2013/05/22/5f275ca0-c226-11e2-914f-a7aba60512a7_story.html
 Hence why “the [traumatic] impact of TV images is more intense when people watched events in real time, that is, as they occurred.” Young, Allan. (2007). Posttraumatic Stress Disorder of the Virtual Kind: Trauma and Resilience in Post-9/11 America. In Trauma and Memory: Reading, Healing, and Making Law. (Sarat, Austin, Nadav Davidovitch, and Michal Alberstein, eds.). Stanford: Stanford University Press.
 Fassin & Rechtman, op. cit., 17.
I use the term “trauma narrative” as a deliberate reflection and invocation of Kleinman’s concept of an “illness narrative,” in hopes of echoing its associations with broad and secondary social symptoms of diseases and of calling to mind the critical “epidemic” metaphor used to describe mass shootings.
 Emphasis added. Fassin & Rechtman, op. cit., 73.
 Haskins, as quoted in Jarvis, op. cit., 798.
 Fassin & Rechtman, op. cit., 18.
 See Jarvis, op. cit.
 As Fassin and Rechtman explain, “empathy posits a sort of communion in trauma.” Fassin & Rechtman, op. cit., 18.
 Jarvis, op. cit., 807.
 Emphasis added. Obama, op. cit.
 In fact, a number of people publicly came out as LGBT in the days following the shooting, many explicitly referencing a desire to stand with the community in the wake of the tragedy. Cf. White, Alan and Patrick Strudwick. (2016, June 13). People Are Coming Out as LGBT in Response to the Orlando Attack. Buzzfeed. https://www.buzzfeed.com/alanwhite/people-are-coming-out-as-lgbt-in-response-to-the-orlando-att
 One blogger remarks, after the Boston bombings: “What all this has resulted in is the displacement of compassion and empathy with anger and resentment. Because when the names of slain white children are spoken, I can barely hear them anymore. My ears are plugged with the unuttered names of the Black and brown children whose lives didn’t mean enough to be spoken aloud on CNN. When I see photos of their smiling white faces, I can only imagine the smiles of fallen Black and brown children whose faces never grace the news.” McKenzie, Mia. (2013, April 22). Hey, White Liberals: A Word on the Boston Bombings, the Suffering of White Children, and the Erosion of Sympathy. Black Girl Dangerous. http://blackgirldangerous.org/new-blog/2013/4/22/hey-white-liberals
Another says: “Boston is no different, no more or less tragic than the bombings that have razed the marketplaces of Karachi, the school in Khost, the mosque in Karbala. And yet it seems so.” Zakaria, op. cit.
This web-roundup looks at the problem of polarization. Several events during the past month have brought the issue to the forefront. As a result, the web was filled with debates over this increasing political and social polarization that is indeed becoming more and more evident not only in the U.S. but in many societies around the world.
At the more basic level, polarization refers to the split of social or political groups based on opposing views. Over time, the two sides or “poles” get further and further apart. It is in this dynamic that people, be it group members, party affiliates, or the citizens of a country, find it increasingly hard to remain neutral. Indeed, it can be difficult to counter polarization once the process has been triggered because it tends to happen along economic, political and, moral lines, and because it mobilizes affect and emotions as much (or even more) than rational argumentation. If the whole description sounds oddly familiar, it is because processes of polarization have been prominently in the news this month.
In the U.S., the elections have made obvious a polarization running deep within and between political parties. Ted Cruz’s refusal to endorse Trump was framed along moral lines, as he asked voters to “follow their conscience”, reviving deep divisions in the Republican Party and drawing accusations of betrayal and broken promises. At a different level, the campaign is also exacerbating ingroup-outgroup thinking, splitting Americans along the lines of “us” vs. “them”. The America above all discourse has a strong component of nationalism that is dangerous for many different reasons. Among them, the fact that it offers itself as a justification for hurting people who are not “us”, and that it contributes to internal fragmentation and instability by defining a narrower idea of who truly belongs and who doesn’t, leaving minorities of all kinds outside this category.
Nationalism also fights internal reflection or external criticism, as these threaten the image of power and self-glorification. Fortunately, the reactions against it have been not only strong but creative and fun.
Polarization is also evident between political parties. Even though this election may seem to be particularly polarized, it is interesting and important to note that the split has indeed been building for years and seems to be here to stay. Just as an example, Democrats and Republicans have dramatically different visions about what makes their states “great”. Such polarization of what is “good” reflects just how opposed the ideas of community and goodness are between these two groups.
Exacerbated polarization is clearly not limited to America. The Brexit vote, met with disbelief by liberals, mostly Londoners, and mostly young voters, is the result of a deep fracture in the British society that has been in the make for at least thirty years. The polarization in this case can be seen between Londoners and inhabitants of the rest of the country, between social classes, between generations, and along ethnic groups. Among all the negative impacts of the vote, perhaps one useful consequence of the Brexit vote is that it finally reveals such fractures openly, forcing Brexiters and Non-Brexiters alike to confront it (see more on this here and here).
Yet another case of polarization was made obvious with the failed coup attempt in Turkey, which has deepened pre-existent divisions, and has moved the government to act in ways that seem to conflate dissent with treachery, all in the name of rooting out the “parallel state”. The threat to democracy, and freedom is evident, as is the intolerance to anyone who thinks different.
Social scientists in general and anthropologists in particular have long been interested in the communalities as well as in the differences and divisions along cultural, social, and moral lines. We know that borders are indeed much more fluid and rich than the black and white world painted by divisive processes. Yet, the strong force of polarization makes it harder to see the other as an ally, and to see the world from the other’s point of view. Indeed, it can make it hard to see the other as a fellow human being. The anthropological discipline provides powerful tools to counter these forces. It may be a good moment to consider how these can be used in the current social and political landscape.
The account that follows depicts a visit with my neurologist. The visit was one of many within a five-month period of navigating various medical spaces to get to the bottom of the illness that was ailing me. It speaks to the systemic and cultural dimensions of illness that threaten to undermine medical understandings, diagnosis and treatment, alongside personal narratives of suffering.
I need a body to live and my current one is harbouring a ghost. To medical professionals, its idiopathic guise makes it seemingly innocuous. But it’s not. How do I know? Because it’s already stripped me of valuable time with my children. Because I’m the one embodying these curious ailments. My muscles twitch. My hands ache. There’s an old guy sitting to my right in the waiting room, plaid shirt and jeans, who’s called in for his appointment. He has more bounce in his step than I do. I feel like I’m living an 80’s body swap comedy. But my body hasn’t been swapped. It’s the same white body I’ve always had. It just feels different. I’m envious of his seventy-five-year-old vitality.
Finally, Professor Mead – let’s call him that for purposes of anonymity – calls my name. The office atmosphere feels stiff and lifeless. He tells me to lie down on the bed. My shorts and t-shirt provide unencumbered access to my body’s flesh. A needle electrode is inserted into my muscles to record the electrical activity at rest. The monitor declares the electrodes findings through a series of wavy and spiky lines.
Small fasciculations are recorded in my left foot. They’re nothing like the twitching that distracts me in the evening, but he assures me that they’re benign. And then, with a mingled look of confidence and haughty nonchalance he asks, “Anything stressful going on at the moment?” I know stress can trigger fasciculations, but I’ve been asked this question too many times over the past months and, frankly, I find it irritatingly misguided in light of my embodied suffering.
I tell him that I have been experiencing weakness in my left arm. He begins pulling and pushing on my arms, asking me to apply resistance. My feelings of weakness are subjective, he asserts, a distortion of what’s happening. They are incongruent with his objective measures – his sophisticated pulling and pushing – which reveal no loss of strength. I could easily argue that the knowledge I have of my body after thirty-five years is more objective than his pushing and pulling, which seems to me to be a more subjective measure: Based on whose standard of strength? And certainly interpretively vulnerable to personal bias.
I stare at the EMG monitor and the waveforms that represent the ‘benign’ complaints that deprive me of sleep and time spent with my family. Given my age, Prof. Mead defaults to a diagnosis of ‘Post Viral Chronic Fatigue Syndrome’ (CFS). He quickly rattles off a list of other aliases the condition is known by, including Myalgic Encephalomyelitis and Post Viral Fatigue. He tells me that it usually arises after a bout of Glandular Fever. The problem is, I haven’t had glandular fever.
It’s a “wastebasket diagnosis.” Not because CFS isn’t real – it couldn’t be more real for those debilitated by the condition. It’s a wastebasket diagnosis because it offers an explanation, in the absence of one. I get off the bed and slip my shoes back on. I leave feeling disoriented and farther from understanding my body and personal narrative of suffering. Dr. Richard Horowitz (2013) identifies time restrictions and missing out on important symptoms as potential candidates that interfere with making a diagnosis. I suspect the medical literature is also at fault, making listening on the part of the physician more imperative.
CFS is often used interchangeably with [Benign] Myalgic Encephalomyelitis (ME). The relationship (if any) between CFS and ME is a contested one. There are a vast number of proponents from within the medical community advocating for the abandonment of CFS as a diagnostic label and a return to the name Myalgic encephalomyelitis, which is believed to speak more directly to the condition’s underlying pathophsyiology (see, 2011 International Consensus Criteria). The term CFS does no more than describe a primary feature of the disease, overlooking the many complex dysfunctions of the condition. Jodi Bassett, the founder of The Hummingbird’s Foundation for Myalgic Encephalomyelitis contends that CFS isn’t a distinct diagnosis, it defines a “mixed population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue” (2011:20). Persons displaying what are perceived to be vague and ubiquitous symptoms are often lumped under the umbrella term CFS, for which there is no known aetiology or treatment. They are dismissed and urged to seek treatment on their own. The ways these conditions are institutionally recognised and framed within the World Health Organization’s International Classification of Diseases (ICD) reveals a primary source for much of this ongoing confusion.
The ICD provides international classifications and standards for diagnosis, health management and epidemiology. ME has been recognised and classified by the ICD since 1969 (Hooper 2006). CFS, on the other hand, didn’t gain institutional recognition until its listing in the alphabetic index of the ICD in 1992, and coding in 1998 (CDC 2001). Bassett (2011) argues that the creation of CFS as a diagnostic label was politically motivated. She goes on to describe that with an increase incidence of ME in the late eighties, insurance companies were involved in creating CFS as a means of expediently denying long term disability claims based on “tiredness” (p. 19). Bassett (2009) outlines the industry that has sprouted up around CFS, and the vested political and financial interests key players have in perpetuating it as a legitimate unexplained medical condition: governments, medical insurance companies, doctors, psychiatrists, chemical and vaccine industries, health industry.
The shifting coding and arranging of these conditions in various versions of the ICD compounds the turbid confusion present in medical and public realms. For example, in the tenth edition of the ICD, Postviral Fatigue Syndrome (PVS) shares the same code with ME (G93.3) under diseases of the nervous system (ICD-10 2015). CFS is also indexed to (G93.3), alongside ME and PVS. This has no doubt facilitated the conflation of these diseases within the medical community under one rubric: Chronic Fatigue Syndrome. In recent editions, however, it appears chronic fatigue syndromes indexed associations with the G93.3 code have been removed due to its similarities with PVS, leaving only a nondescript chronic fatigue under the subcategory ‘Not Otherwise Specified’, under ill-defined conditions (R53.82) (Schweitzer 2015; ICD-10-CM 2016). This may be seen as progress for those who supported the separation of CFS/ME. For those with a CFS diagnosis, however, it could work to further alienate their experiences of suffering. Online blogger Mary Schweitzer (2015) describes this as a slap in the face to those suffering from a disease as debilitating as MS or end-stage renal disease.
The way that Professor Mead used each of these terms interchangeably to describe my condition illustrates the reach of misunderstanding within the medical community. I found myself wondering about the impact these diagnoses have had on medical guidelines and practice. How many others had Professor Mead dismissed prematurely in favour of a CFS (mis)diagnosis? How many other medical professionals are complicit in this negligence? Despite their best intentions, the medical strategies employed by physicians are undermined by the medical literature.
An article in the guardian dating back to 2002 suggests that more than 60% of patients diagnosed with CFS/ME in the UK are unhappy about the way the medical profession has treated them (Burne 2002). The various criteria and definitional usages of CFS (e.g. Fukuda, Oxford, Australian, etc.) add to this quagmire. These criteria overlap in some areas and depart in others, further obfuscating understandings of what CFS is. If CFS comprises a mixed-bag of definitions and is applied indiscriminately, how can reliable research be conducted among CFS populations to find the causative nature of these conditions? Carruthers et al. (2011) suggest a more clearly defined phenotype would aid in the selection of homogeneous groups of patients, leading toward improving diagnosis and treatment.
The premature and indiscriminate application of CFS amounts to increased rates of misdiagnosis and systemic neglect. The internet is replete with varied testimonies depicting the profound disturbances and debilitating effects of CFS/ME that go untreated. In a time when medical information is more accessible online, many individuals are forced to research their own conditions, if they are to have any hope of finding treatment.
Much of this points to the historical, cultural and institutional contingency of diagnostic labels. Annemarie Goldstein Jutel (2011) has documented in detail the intersecting social, political, commercial, institutional and technological factors that sustain diagnostic labels or lead to their collapse. It is important to recognise that these categories do not have a natural and independent existence but are social categories that “organise, direct, explain, and sometimes control our experience of health and illness” (145).
Moreover, medical labels confer identities upon persons, which can be problematic if the label is incongruent with one’s own experiences of suffering. In these cases, persons are prevented from constructing a coherent narrative around the suffering that has interrupted their experiences, enhancing their distress. The historical baggage attached to labels and the cultural settings in which they are applied may also work to reinforce clinical assumptions and observations around one’s symptoms, preventing appropriate diagnosis and treatment.
Reflecting upon my consultations with Professor Mead, I can see how our cultural setting and the social meanings different bodies are saturated with may have mediated his interpretations of my illness. Contemporary western life has been marked by the growth of the commercial fitness industry. Jutel notes that fitness centres are part of a fifteen billion dollar per annum industry in the United Sates (2011:100). Various forms of body work (dieting, exercising, cosmetics, etc.) reflect our consumerist practices. As Mansfield (2011) explains, bodies are perceived as projects to be worked on in the pursuit of happiness and pleasure and a more marketable self. Indeed, these are the kinds of messages touted by the media and the fitness industrial-complex, that permeate our most private spaces. The body beautiful is linked to themes of youth, energy, health, romance and freedom (Mansfield 2011). The omnipresent depiction of body ideals in our image-saturated culture enhances our awareness of other bodies, the ways bodies conform and the ways they don’t. Bodies become saturated with social meanings: revered, wanted, desired, pitied or stigmatized.
I wondered, what kinds of meanings did Professor Mead assign to my flesh? What kinds of stories did my white body, hardened from years of running and Thai boxing, call forth? Various comments were made during our consultations regarding my body’s appearance. At one time I was asked if I used performance enhancing drugs. Another time he asked if I had experienced atrophy. Before I could I answer he followed cynically with “It doesn’t look like you’ve experienced any.” And he brazenly quipped that I was a worrier after the EMG found no motor or nerve abnormalities.
Did my physical embodiment and presumed health somehow cohere with medicine’s institutional attitude towards CFS/ME? I think back to Mead’s goodbye: “I hope I don’t see you again”. In Pulse magazine, Dr Mary Church, a member of the British Medical Association’s Medical Ethics Committee, is reported writing:
“Never let patients know you think ME doesn’t exist and is a disease of malingerers. Frustrating though it is…certain members of the profession are true believers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir. Always refer ME patients to a local expert. It’s a wonderful way of passing the buck” (Marshall and Williams 2005).
On Prof. Mead’s table, I felt devoid of any experiential knowledge. In the absence of clinical evidence my experiences and symptoms were subordinate to the presumed cause of my condition (my anxieties), reinforced by my young and healthy-appearing body.
The value of listening to a person’s illness experiences, or “empathetic witnessing” as Arthur Kleinman (1988) calls it, has been well documented in the social sciences over the last three decades. Kleinman defines this as an existential commitment to the ill person that helps them make sense of their embodied suffering and gives value to their experiences (ibid:54). Arthur Frank (1995:66) writes, “the ideological work of medicine is to get the patient to accept this diagnostic identity as appropriate and moral”. Our encounter failed to produce this effect.
This failing, however, is not identical to any one of these things: Prof. Mead, my body, our culture of consumption, the institution of medicine, the clinical gaze, or the social framing of diagnosis. Rather, it’s a failing that emerges from a fleeting intermingling of all of them. The outcome of this clinical encounter emerged through a mixing together of medical and cultural practices, disciplinary knowledges, intimate thoughts and relations that are bought to the encounter from beyond the physical boundaries of the room, an austere consulting room with fluorescent lighting, bodies, EMG machines, waveforms, twitchings, and last-minute appointments. They are these arrangements that give birth to a range of propositions – “He’s anxious and he’s wasting my time,” or, “He’s in good health, this can’t be serious.”
After several more weeks of insomnia, fatigue, arthritic pain, seizures, and twitching I finally got to the bottom of my embodied debilitating curiosities and decided to send a letter to Professor Mead to voice my concerns:
Listening is a moral act, essential to appropriate treatment and care. In my mind, clinical assessments should be a joint venture: A combining of distinct pieces of knowledge (experiential and clinical) in a collaborative effort to find the underlying cause of one’s ailments. Had I not pushed for further testing with my GP, I would have remained ailed by Lyme Disease for an indeterminate amount of time. I write this to you as one patient hoping to appeal to your sense of judgement, with the hope of improving ethical medical practice. I believe better treatment and care could have been provided by adhering to age-old medical principles: obtaining a thorough medical history, conducting a thorough clinical examination and following up with appropriate investigation. I would also add listening to the list.
Aaron J. Jackson is a doctoral candidate in anthropology at the University of Melbourne. His primary interest is in families and disability, with a focus on fatherhood and community.
Bassettt, J. (2009). “Who benefits from ‘CFS’ and ‘ME/CFS’?” The Hummingbirds’ Foundation for M.E. http://www.hfme.org/whobenefitsfromcfs.htm
Bassett, J. (2011). Caring for the M.E. Patient. Lulu.com Publishing
Burne, J. (2002, March 30). Battle Fatigue. The Guardian. http://www.theguardian.com/society/2002/mar/30/health.lifeandhealth
Centers for disease control and prevention. (2001). A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases. http://www.institutferran.org/documentos/ICD_code.pdf
Frank, A. (1995). The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press.
Hooper, M. (2006). The Terminology of ME and CFS. National Alliance for Myalgic Encephalomyelitis. http://www.nameus.org/defintionspages/DefHooper.htm
Horowitz, R. (2013). Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press.
ICD10Data.com. Accessed January 1, (2016). http://www.icd10data.com/Search.aspx?search=chronic+fatigue
Jutel, A.G. (2014). Putting a name to it: Diagnosis in Contemporary Society. Baltimore, Maryland: Johns Hopkins University Press.
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
Mansfield, L. (2011). “Fit, Fat and Feminine? The Stigmatization of Fat Women in Fitness Gyms”. In Women and Exercise: The Body, Health and Consumerism, edited by Eileen Kennedy and Pirkko Markula, 81-101, New York: Routledge.
Marshall, E., Williams, M. (2005). M.E. – who is attacking whom? m.e. support-norfolk: http://www.sayer.abel.co.uk/MESNORFOLK/Attacking.html
Schweitzer, M. (2015). Welcome to ICD-10-CM (blog post). http://slightlyalive.blogspot.com.au/2015/10/welcome-to-icd-10-cm.html
World Health Organisation. (1992). International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). Geneva: WHO. http://apps.who.int/classifications/icd10/browse/2015/en#/G93.3
For this installment of the Top of the Heap series, I spoke with Zoë H. Wool, who is a medical anthropologist and assistant professor at Rice University in Texas.
The invitation to contribute to the Top of the Heap felt like such a treat…and then sent me into a tailspin of professional anxiety (Alexander I. Stingl laid out the dilemma of the decision in his recent contribution). I was tempted to take the most literal approach, since I am, despite my love of orderly library shelves, a heaper of books.
Should I simply snatch the tops off a few of my many heaps, growing like stalagmites on the flat surfaces of my home and office and give you David Mitchell’s The Biopolitics of Disability, Roy Scranton’s War Porn, and the Linen Source summer blowout catalogue? But what about all the rich material exposed by such gross heaptop removal? Hellooooo, down there! I promise to return to you, Queer Disability Anthology! And I’m sorry that you are smothered by a still shrink-wrapped copy of Habeas Viscus, my moldy copy of The Elementary Structures of Kinship, and that feathery pile of conference receipts overdue for reimbursement filing!
No. Better to begin by thinking about thinking. So here are some books that I’m reading, rereading, or about to read, as I think about bodies, and their problems, kinds, and attendant obligations, both in relation to courses I’m teaching on disability, illness, and enhancement and in relation to a new project I’ve been incubating for a few years. The project is about those things, and also about non-institutional, informal, domestic ‘care’ and ‘caregiving’ in two worlds between which there is almost no traffic: injured veterans and disability communities, particularly queer ones.
Drawing on decades of work with African American families raising severely ill or disabled children, Cheryl Mattingly’s Moral Laboratories (UC Press 2014) is an intervention into the vital conversations happening in the anthropology of ethics. Instead of engaging directly with disability theory, Mattingly traces people’s attempts to cultivate flourishing in a context of suffering where much seems overdetermined by race and class more than disability but where people ‘experiment’ in the spaces of the possible. These spaces are fleeting ‘moral laboratories’ that continually open, even in the face of seemingly relentless personal (and structural) tragedy. Mattingly understands these experiments through a framework of first person (as opposed to third person) virtue ethics, reflecting carefully along the way about the pluralistic and sometimes contradictory meanings and practices of the good life.
The last year or so has been terrific for feminist engagements with the stuff and science of the body, perhaps the biggest corner of the new feminist materialism tent. Most notable to me are two books on my summer reading list, Victoria Pitts-Taylor’s The Brain’s Body (Duke 2016) and Elizabeth Wilson’s Gut Feminism (Duke 2015). One or both of these will probably also end up on my syllabus for a Bodies, Technologies, Enhancements seminar this fall.
Gut Feminism (Duke 2015) is Wilson’s follow up to her dense, brief, and glorious Psychosomatic (Duke 2004) and shares a title with her 2004 article in Differences that is a kind of coda to that book and prelude to this one. Gut Feminism the article brings Freud contemporary Sandor Ferenczi’s concept of the biological unconscious into the gut—specifically, the unique, biosocially conditioned bulimic gut—where it meets 90% of the body’s serotonin and the question of why SSRIs have been successful in treating bulimia. Gut Feminism the book elaborates this space, with a special interest in how feminism and pharmaceutical data might productively metabolize each other. With Psychosomatic, it is part of Wilson’s broader project to rethink the relationship of feminism and biology, psychiatry, and neuroscience, which she does across the history of modern neurology with deep and careful aplomb. I am always thrilled to go along for the ride, and am looking forward to another ‘look ma, no hands!’ experience of thinking with her this summer.
In conversation with Wilson’s work, Victoria Pitts-Taylor’s The Brain’s Body (Duke 2016) is an effort to hold contemporary neuroscience and its particular figuring of brain and body to critical account, taking neuroscience seriously but also calling out the dangerous modes of reductionist thinking that dissolve structural inequality into biological difference. I was excited about earlier iterations of this project, like her 2013 Hypatia piece on mirror neurons, affect theory, and intersubjctivity, which addressed questions of relationality and embodiment. I’m looking forward to seeing more in the book, especially as she takes on kinship which I’m also attempting to rethink at the moment.
Feminist, Queer, Crip (Indiana 2013) is Alison Kafer’s collection of interrelated essays that have been making their way deep into the collective anthropological unconscious over the past couple of years. The book is essential reading for anyone thinking with disability theory (which, I imagine I need not specify to Somatosphere readers includes people not working specifically on disability). As with other important work in the space of crip theory, Kafer leverages the resonances and overlaps between the social, cultural, and political positions of queers and disabled people into new modes of critical thought and political engagement across categories of identity or axis of oppression. One of the things I like best about Kafer’s work is her refusal to cut the Gordian knots that animate it—she generates new trajectories as she makes ambivalence into a seriously thoughtful craft. Of particularly broad value in Feminist, Queer, Crip is Kafer’s work on temporality, in which she pushes Judith Halberstam’s thinking about queer time beyond itself by exploring temporalities of illness and disability that in some ways are precisely queer in Halberstam’s sense, but that also require a certain shift in celebratory queer politics in order to address the forms of structural violence and eugenic desire that shape them.
Part of my new project involves an experiment to unseat the family, anchored in the conjugal couple, as the basic unit of human sociality. To help me think about this I’ve been revisiting some foundational texts and I have recently found myself drawn to Shulamith Firestone’s 1970 radical feminist classic The Dialectic of Sex, an imaginative indictment of heteronormative arrangements of both capital and care. I want to devote some time this summer to seeing how it might help me think not specifically, or not only, beyond the patriarchal situation of women in the home, but to think about a politics of intimacy beyond the family more generally.
Given the heights to which some elevate the designation, I’m not sure I’m worthy of claiming to be a serious Start Trek: The Next Generation fan. But let me put it this way: I’ve seen most episodes multiple times and used to have the Enterprise on my personal cheques. Despite (or perhaps because of?) all its considerable essentializing and smug liberalism, there is virtually no key dilemma or animating question in anthropology that TNG hasn’t dealt with directly or played out in workable allegorical form. When presented with the opportunity, I like to point this out to my students. This must be at least a little effective, since, I am proud to say, a former student recently sent me Star Trek Archives: Best of The Borg as a token of her appreciation. It currently tops my nightstand.
There are also lots of exciting things on the horizon. Elizabeth Povinelli’s Geontologies (Duke 2016) will be out this fall, and I’m keen to see the full articulation of her effort to move away from biopolitical distinctions between life and death and toward a geontological distinction between life and non-life, while taking on plasticity, new materialism, and antinormativity in the offing. Think big! Eli Clair’s new book on the politics of cure will be out from Duke in the next year or so, and I imagine I will devour it quickly and spend the next moth seeing the political dynamics of cure everywhere. I was also very excited to learn that Sunara Taylor’s first book Beasts of Burden: Animal and Disability Liberation will be out in Feb 2017 from The New Press. It promises to push our thinking about the human, the non-human, and the inhuman in new ways, and generate some productive political friction in the offing.
Now, once more into the heaps!
Zoë H. Wool is Assistant Professor of Anthropology at Rice University, where she teaches about bodies, care, disability, intimacy, and the uneven valuing of fleshy life in the contemporary United States. Her first book, After War: The Weight of Life at Walter Reed was published by Duke University Press in 2015.
Photo: Girl Reading Inside a Book.
Hello everyone! Please check out our roundup for the second half of the month. Also, the current issue of Hau has a symposium on Webb Keane’s Ethical Life: Its Natural and Social Histories (2016) that may be of interest, with contributions by Cheryl Mattingly, Rita Astuti, James Laidlaw, Nicholas Harkness, C. Jason Throop, Richard Schweder, and Webb Keane himself.
Seen as contributing to human enhancement, implanted technologies have recently been receiving a lot of attention. However, reflections on these technologies have taken the shape of rather speculative ethical judgments on “hyped” technological devices. On the other hand, while science and technology studies and philosophy of technology have a long tradition of analyzing how technological artifacts and tools transform and (re-)configure our lives, they tend to focus on use configurations rather than the intimate relations brought about by implanted technologies. Even the cyborg has lost some of its hermeneutic power as it has been detached from its material grounds, becoming a discursive entity. In this article, I reclaim the importance of materiality and explore how people live (and learn to live) with spinal cord stimulation (SCS), which is a type of neuromodulation technology. Implanted in bodies and seemingly out of sight, this technology does not cease to matter. Embodiment and incorporation are crucial for people to live well with SCS. Embodying the neuromodulation technology entails groping processes in which gestures are central and an increased intimacy with one’s bodily materiality. Incorporating it is highly relational and entangled with the bodies of loved and distant ones, humans and nonhumans.
This article empirically analyzes how victims’ remains were recovered, identified, repatriated, and retained after the World Trade Center (WTC) terrorist attacks of September 11, 2001. It does so by asking the question whose body is it. This question brings to the fore issues related to personhood and ownership: how are anonymous and unrecognizable bodily remains given back an identity; and who has ownership of or custody over identified and unidentified human remains? It is in this respect that the article engages with technoscientific and legal, or “technolegal,” trajectories of human remains in the wake of the WTC tragedy. By using the metaphor of “materialization,” it becomes possible to trace how remains are forensically identified and implicated in legal regimes. “Technolegal materialization” as a concept and methodological sensitivity contributes to the current “actor-network theory” (ANT)-inspired legal scholarship, which tends to focus on legal practices in courtrooms but not those beyond them. In this article, 9/11 victims’ remains are followed from “Ground Zero” to the forensic laboratory and beyond and articulates five instances of technolegal materialization of bodily remains and their past and contemporary existences.
Lee F. Monaghan, Jonathan Gabe
The embodiment of health identities is a growing area of interest. Questions posed in this literature include: how important is the body in our understandings/experiences of health, how are everyday definitions of health and self embodied despite chronic illness, and how do social relations influence these interpretations? Mindful of such questions, this paper draws on a qualitative study of mild to moderate asthma among young people in Ireland. In-depth interviews were undertaken with 31 respondents aged between 5 and 17, including boys (n = 15) and girls (n = 16) from different class and ethnic backgrounds. Core themes included: the importance of play, physical activity and sport; diet/nutrition; and physical appearance. Asthma sometimes presented challenges in relation to specific domains, notably strenuous physical activity, though in many other respects its potential impact was discursively minimised. Attentive to various modalities of the lived body, we illustrate how health identities are negotiated among young people diagnosed with a chronic illness. Connections are also made with the sociology of childhood and (ill) health, which views young people as active agents.
Juveria Zaheer, Wes Shera, A. Ka Tat Tsang, Samuel Law, Wai Lun Alan Fung, Rahel Eynan, June Lam, Xiaoqian Zheng, Liu Pozi, Paul S. Links
Rationale: Recent studies have highlighted higher rates of suicidal ideation and behaviour and associated themes of gender role stress in Chinese women residing in North America. However, qualitative studies, which privilege their voices in the discourse of suicide prevention and provide insight into their experiences, are lacking.
Objective: To gain an understanding of the life histories, patterns of distress and constructions of suicide of Chinese-Canadian women with a history of suicidal behaviour.
Methods: Ten women were recruited from four mental health programs in Toronto, Canada and participated in qualitative interviewing and analysis informed by constructivist grounded theory.
Results: Chinese-Canadian women describe experiencing “stress” or “pressure” leading to the exacerbation of depressive symptoms. Stress and pressure are managed through a coping strategy of endurance, informed by the cultural conception of “ren”. Cultural influences contribute to the manifestation of stress and pressure as somatic symptoms and sleeplessness. Finally, the women describe feeling unable to endure through worsening distress, reaching a “breaking point”; suicidal behaviour is constructed as a strategy to disrupt this cycle.
Conclusion: This study challenges the binary notion that suicidal behaviour is either a consequence of mental illness or a reaction to interpersonal stress. Rather, the women describe an ingrained pattern of enduring through psychosocial problems without acknowledging worsening anxiety, depressive and physical symptoms. The pattern of endurance also prevents early treatment of these difficulties, resulting in the intensification of symptoms until a breaking point is reached. Knowledge of these patterns and coping strategies can allow for earlier identification and intervention for women at risk to prevent the worsening of distress leading to suicidal thoughts and behaviour.
Erin J. Henshaw, Kristine M. Durkin, Rita J. Snell
Rationale: Maternal postpartum depression (PD) is a common, debilitating mental health problem. Yet despite effective treatments and widespread screening, treatment rates remain low. Previous studies suggest fathers are frequently consulted about maternal PD symptoms, but little is known about the process, content, or outcomes of these consultations.
Objective: The aim of this work was to explore how couples communicate about PD symptoms. Methods: A single purposive sample of first-time parents stratified by maternal depression screening scores (Edinburgh Postnatal Depression Scale; EPDS) and partner status was drawn from a prospective survey of 300 parents in the U.S. Midwest. Partnered mothers with an elevated (EPDS≥10) depression screening score at one of four time points in the postpartum year comprised the majority of the sample. Smaller samples of participants with low EPDS scores and single participants were included to provide contrast in the consultation and decision making process. A total of 39 participants (22 married/EPDS-high, 10 married/EPDS-low, 5 single/ EPDS-high, 2 single/EPDS-low) were interviewed at one year postpartum. Mothers and fathers were interviewed separately to promote candid responses and allow comparison of illness conceptualizations. Interviews were transcribed, analyzed, and coded through an iterative process.
Results: Couples’ conversations about mood changes centered on two overarching questions: How bad is it? and What should we do about it? Answering How bad is it? involved parents comparing maternal mood changes to uncertain depression criteria, and mothers asking partners and female relatives whether changes were normal. Answering What should we do about it? had three themes: Fathers feeling unprepared to respond to depression, mothers and fathers expressing reluctance to seek treatment, and couples working collaboratively to accommodate treatment or self-care.
Conclusion: Themes suggest partners significantly contribute to women’s conceptualization of mood changes and should be actively engaged in education, screening, and referral practices.
Bolanle A. Ola, Scott J. Yates, Simon M. Dyson
Sickle cell disorders (SCD) and depression are both chronic illnesses of global significance. Past research on SCD and depression struggles to make sense of statistical associations, essentializes depression within the person with SCD, and treats stigma as an automatic correlate of chronic illness. A mixed methods study (March 2012–April 2014) was undertaken with people living with SCD and depression in Lagos, Nigeria, examining depression-as disease (questionnaires); depression-as-illness-experience (individual depth interviews), and depression-as-societal-sickness (focus groups). 103 people with SCD attending an outpatients clinic were administered the Patient Health Questionnaire-9, and 82 self-identified with some level of depression. Fifteen were subsequently interviewed about their illness experience. Their lives were characterized by being extensively subjected to vicious discriminatory remarks, including from significant others, negative experiences they felt contributed to their depression and even to suicidal thoughts and actions. Contrary to misconceptions of the relational nature of stigma, respondents recognized that stigma resulted not from their SCD but from assumed broken social norms and expectations, norms to do with educability, employability and parenthood. They recounted either that they successfully met such expectations in their own lives, or that they could conceivably do so with reasonable societal adjustments. Ten respondents with SCD and depression further took part in two series of three focus groups with five people in each series of groups. In groups people living with SCD were able to challenge negative assumptions about themselves; to begin to recognize collective social interests as a group, and to rehearse backstage, in discussions between themselves, social actions that they might engage in frontstage, out in wider society, to challenge discriminatory societal arrangements they held to contribute to their depression. To the extent that depression in SCD has social origins, then social interventions, such as anti-discrimination laws and policies, are key resources in improving mental health.
Dawn Goodwin, Laura Machin, Adam Taylor
Dissection has held a privileged position in medical education although the professional values it inculcates have been subject to intense debate. Claims vary from it generating a dehumanising level of emotional detachment, to promotion of rational and dispassionate decision-making, even to being a positive vehicle for ethical education. Social scientists have positioned dissection as a critical experience in the emotional socialisation of medical students.
However, curricular revision has provoked debate about the style and quantity of anatomy teaching thus threatening this ‘rite of passage’ of medical students. Consequently, some UK medical schools do not employ dissection at all. In its place, observation of post-mortem examinations – a long established, if underutilised, practice – has re-emerged in an attempt to recoup aspects of anatomical knowledge that are arguably lost when dissection is omitted.
Bodies for post-mortem examinations and bodies for dissection, however, have striking differences, meaning that post-mortem examinations and dissection cannot be considered comparable opportunities to learn anatomy. In this article, we explore the distinctions between dissection and post-mortem examinations. In particular, we focus on the absence of a discourse of consent, concerns about bodily integrity, how the body’s shifting ontology, between object and person, disrupts students’ attempts to distance themselves, and how the observation of post-mortem examinations features in the emotional socialisation of medical students.
Sophie Day, R Charles Coombes, Louise McGrath-Lone, Claudia Schoenborn and Helen Ward
We conducted ethnographic research in collaboration with a large, research-intensive London breast cancer service in 2013–2014 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.
Kari Nyheim Solbrække and Geir Lorem
This article’s point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the women’s experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed.
John Gardner and Alan Cribb
This article explores power relations between clinicians, patients and families as clinicians engage in patient-centred ethical work. Specifically, we draw on actor-network theory to interrogate the role of non-human elements in distributing power relations in clinical settings, as clinicians attempt to manage the expectations of patients and families. Using the activities of a multidisciplinary team providing deep brain stimulation to children with severe movement disorders as an example, we illustrate how a patient-centred tool is implicated in establishing relations that constitute four modes of power: ‘power over’, ‘power to’, “power storage” and “power/discretion”. We argue that understanding the role of non-human elements in structuring power relations can guide and inform bioethical discussions on the suitability of patient-centred approaches in clinical settings.
Mothers who use drugs face much discriminatory action as society in general finds female drug users’ modes of caring for their children unacceptable. In this article, I explore the ways in which Thai women’s injecting practices revolve around the role of mother ‘maae’ and the ways they employ tactics to challenge the motherhood discourse. This article draws on in-depth interviews with 30 Thai mothers injecting drugs. Thai mothers injecting drugs struggled with stigma and self-blame. They internalise the values of the mother ‘maae’, that is, what the mother is supposed to be; attempting to combine their drug use with their parental responsibilities. Having a child is treated as a means for many women to manage the hostile social impacts of being an addict mother as well as anxieties about the future of their children. To maintain identity as a mother, as gender norms dictates, the mothers employ several tactics to defend that identity from the threats. In conclusion, the findings have implications for harm reduction and reproductive services for women using drugs in Thailand; health care providers need to appreciate the ramifications of the lived experiences of the women who take drugs.
Moss E. Norman, Geneviève Rail
Using the cultural phenomenology of Sara Ahmed, we expand upon biopolitical analyses of obesity discourse by interrogating how the contours of normative feminine embodiment are formed through entangled relations between dominant obesity discourse and everyday sensuous encounters. We examine qualitative interviews with young women and suggest that fat encounters are situated within a “cultural politics of emotion”, where “feelings about” and “feelings for” fat others reflect emotional orientations that imbue the boundaries demarcating the normatively thin feminine subject with a sensuous materiality. We conclude by suggesting that Ahmed’s cultural phenomenological approach offers novel and nuanced insights into the materialization of embodied feminine subjectivities by centring the sensuous, felt and emotional encounters between sameness and difference.
Eva Giraud and Gregory Hollin
A caring approach to knowledge production has been portrayed as epistemologically radical, ethically vital and as fostering continuous responsibility between researchers and research-subjects. This article examines these arguments through focusing on the ambivalent role of care within the first large-scale experimental beagle colony, a self-professed ‘beagle utopia’ at the University of California, Davis (1951–86). We argue that care was at the core of the beagle colony; the lived environment was re-shaped in response to animals ‘speaking back’ to researchers, and ‘love’ and ‘kindness’ were important considerations during staff recruitment. Ultimately, however, we show that care relations were used to manufacture compliancy, preventing the predetermined ends of the experiment from being troubled. Rather than suggesting Davis would have been less ethically troubling, or more epistemologically radical, with ‘better’ care, however, we suggest the case troubles existing care theory and argue that greater attention needs to be paid to histories, contexts, and exclusions.
Recent studies in psychiatry reveal an acceptance of trauma through the media. Traditionally restricted to immediate experience, Post-traumatic Stress Disorder (PTSD) is now expanding to include mediated experience. How did this development come about? How does mediated trauma manifest itself? What are its consequences? This essay addresses these questions through three cases: (1) ‘trauma film paradigm’, an early 1960s research program that employed films to simulate traumatic effects; (2) the psychiatric study into the clinical effects of watching catastrophic events on television, culminating with the September 11 attacks; (3) reports on drone operators who exhibit PTSD symptoms after flying combat missions away from the war zone. The recognition of mediated trauma marks a qualitative change in the understanding of media effects, rendering the impact literal and the consequences clinical. What informs recent speculations about the possibility of trauma through media is a conceptual link between visual media and contemporary conceptions of trauma.
This work aims to rethink the relationship between anthropology and cultural psychiatry from a historical perspective, through reflections on the dynamics of forgetting and remembering in the context of migration. While migrants’ symptoms often bear cultural hallmarks of suffering, they also reveal images of a traumatic history, which resurface in moments of danger, uncertainty, and crisis. I claim these symptoms are allegories of a dispossessed past, and can be interpreted as counter-memories, as “palimpsests” of an eclipsed script. Trauma symptoms keep returning to a collective past, and thus can be considered a particular form of historical consciousness. Psychiatric diagnoses may obscure these counter-memories. In particular, the diagnostic category of posttraumatic stress disorder that is commonly attached to traumatic experiences in current clinical practice recognizes the truth of individual traumatic events, but at the same time contributes to concealing the political, racial, and historical roots of suffering.
Thandi Davies, Marguerite Schneider, Memory Nyatsanza, and Crick Lund
This study examined experiences and explanations of depression amongst Xhosa-speaking pregnant women, mothers, and health workers in an urban township in Cape Town, South Africa. The study was conducted as part of formative research for a randomised controlled trial to develop and evaluate a task-sharing counselling intervention for maternal depression in this setting. We conducted qualitative semi-structured interviews with 12 depressed and 9 nondepressed pregnant women and mothers of young babies, and 13 health care providers. We employed an in-depth framework analysis approach to explore the idioms, descriptions, and perceived causes of depression particular to these women, and compared these with the ICD-10 and DSM-5 criteria for major depression. We found that symptoms of major depression are similar in this township to those described in international criteria (withdrawal, sadness, and poor concentration), but that local descriptions of these symptoms vary. In addition, all the symptoms described by participants were directly related to stressors occurring in the women’s lives. These stressors included poverty, unemployment, lack of support from partners, abuse, and death of loved ones, and were exacerbated by unwanted or unplanned pregnancies and the discovery of HIV positive status at antenatal appointments. The study calls attention to the need for specifically designed counselling interventions for perinatal depression that are responsive to the lived experiences of these women and grounded in the broader context of poor socioeconomic conditions and living environments in South Africa, all of which have a direct impact on mental health.
Daniel E. Jimenez, Kimberly Burrows, Kelly Aschbrenner, Laura K. Barre, Sarah I. Pratt, Margarita Alegría, and Stephen J. Bartels
The objective of this study was to explore the perceived benefits of engaging in health behavior change from the viewpoint of overweight and obese Latinos with severe mental illness (SMI) enrolled in the U.S. Qualitative, semistructured interviews were conducted with 20 obese Latinos with SMI who were enrolled in a randomized trial evaluating the effectiveness of a motivational health promotion intervention adapted for persons with SMI. Overweight and obese Latino participants believed that engaging in health behavior change would have both physical and mental health benefits, including chronic disease management, changes in weight and body composition, and increased self-esteem. Interventions that explicitly link physical activity and healthy eating to improvements in mental health and well-being may motivate Latinos with SMI to adopt health behavior change.
Caroline Marquer, Rebecca F. Grais, and Marie Rose Moro
Mental health care for infants and young children is often greatly limited in low-resource settings. The purpose of this study was to describe maternal perception of emotional difficulties of preschool children in a rural area of Niger (Maradi). In this context, both mental health awareness and services were scarce. This research was part of a larger cross-cultural validation study of a screening tool for psychological difficulties in children aged 3 to 6 years old. Data collection included group discussion and individual interviews. A total of 10 group interviews and 83 individual interviews were conducted. The results highlight mothers’ perceptions concerning their children’s psychological difficulties. Sleep difficulties were considered significant by the mothers and were used often as an entry point for further discussion of concerns. Peer and sibling relationships, separation anxiety, and reactions to difficult events were also described. Identification of mothers’ perceptions of children’s main difficulties through a mixed-method approach shows promise as a way to inform interventions to provide culturally appropriate care for children in need.
Lucy S. McGregor, Glenn A. Melvin, and Louise K. Newman
Refugee adolescents endure high rates of traumatic exposure, as well as subsequent resettlement and adaptational stressors. Research on the effects of trauma in refugee populations has focussed on psychopathological outcomes, in particular posttraumatic stress disorder. However this approach does not address the psychosocial and adaptive dimensions of refugee experience. The ADAPT model proposes an alternate conceptualization of the refugee experience, theorizing that refugee trauma challenges five core psychosocial adaptive systems, and that the impact on these systems leads to psychological difficulties. This study investigated the application of the ADAPT model to adolescents’ accounts of their refugee and resettlement experiences. Deductive thematic analysis was used to analyse responses of 43 adolescent refugees to a semistructured interview. The ADAPT model was found to be a useful paradigm to conceptualize the impact of adolescents’ refugee and resettlement journeys in terms of individual variation in the salience of particular adaptive systems to individuals’ experiences. Findings are discussed in light of current understandings of the psychological impact of the refugee experience on adolescents.
of focus and intense care in order to ‘secure’ infants’ future health,
of exclusive breastfeeding.
These brackets of time demarcate periods of intense focus and intervention that aim at mitigating loss and securing potential. As Michelle Pentecost writes in the introduction to this series, this impetus draws on new research in epigenetics, neuroscience and DOHaD (Developmental Origins of Health and Disease), and operates on notions of best practice that sketch the contours of ‘good mothering’. I track this discourse in relation to everyday lived experience in a small Cape Winelands town that is characterised by stark inequality and seasonal precariousness. My research (as part of the First Thousand Days Research group at the University of Cape Town) commenced at a soup kitchen during ‘the hungry season’. There I met Jenna Arendse, one member of a constellation of networks considered in relation to the imaginary of the mother-child dyad in the first thousand days. I asked how nourishment was constituted, enabled and hindered.
A working definition of nourishment is grounded in everyday lived experience and registers care that is affective, and not exclusively evidenced in material forms. Nourishment as practice augments life, is context-specific. It arises within social networks of care, embodying systemic configurations of power and circulating societal norms. Nourishment is nurture that may not be stable, but seeks to produce and reproduce local ideas of good. While nourishment is not fixed solely on food, attention to ingestion (ubiquitous and centred on taste and body) highlights its forms. Thus, my research considered ingestion in the everyday, foregrounding the socio-materiality of food. The everyday experience of nourishment comes up against discursive prescriptions of best practice as illustrated in in this vignette, drawn from fieldnotes written a few hours after birth:
Jenna Arendse sits in a large armchair in Stellenbosch public hospital. A red and black chequered blanket is tucked around her waist. Her new-born son lies sleeping on his back in a mobile crib beside her. She is exhausted. Jenna gave birth at home at about 2am. The bleeding did not stop after labour, and emergency services were called to drive her the 20 minutes to hospital.
Jenna explains that the nurse admonished her earlier: “This morning the nurse came, and she said to me: do you know how dangerous it is to birth at home? Then I said to her: ‘I know what happened the first time’. You see. She won’t tell me what to do.” I ask her why she wanted to give birth at home. She says “I wanted to have him at home, Carina. It’s family-less here, people-less here. It’s not for me.”
Jenna wants to go home desperately. So desperately that she smeared icing from a cake her mother brought onto her new-born’s lips, hoping it would raise his blood sugar: the magic spell that would grant her exit rights.
The nurse takes the baby away for the blood glucose test. We sit, we hear infant screams. Jenna reacts quickly, she sits up, hastens to the door. “Is that my child crying like that?” she asks a passing nurse. The nurse ignores her. Jenna hovers in the doorway until a nurse brings him back. He had been crying. “As soon as they release me and my child I won’t walk out of here. I will run.”
Jenna’s smearing of icing onto the lips of her new-born directly contravened the prescription that infants breastfeed exclusively for six months. This gesture suggested a practice of nourishment wherein rapid exit from hospital was prioritised over adherence to prescription. What underlying assumptions dictate good mothering in this complex picture, giving credence to a calendar of deeds in one instance and homecoming in another?
In their work on temporal politics Adams, Murphy and Clarke (2009) write that anticipation is the “palpable sense that things will be (all) right if we leverage new spaces of opportunity, reconfiguring ‘the possible’’ (2009:246). In the demarcation of the first thousand days of life as an anticipated terrain of potential, both hope and dread are at play: a dread that lack, hunger, violence, pain, can be inherited – looped through the body and propelled into a future time and landscape. There also exists a hope that embodied lack can be guarded against, and new life furnished with an optimal start. The politics of temporality presently at play accept a version of truth as that which will shape the future in certain terms. However, this version of ‘truth’ is constantly evolving and subject to revision (Adams et al. 2009:247). This cycling of recommendations that refer to futures and demand action in the present stems from both a political and affective state. The threading of affect and politics through policy and into the homes and bodies of people thus requires careful attention to the insidious ways in which such claims designate responsibility and create moral burdens. Discourses of anticipation premised on scientific advance manifest in governance and healthcare prescriptions, and are shot through with affect. Yet affect is cast as deviant if it leads to enactments of nourishment at odds with prescription.
The first thousand days imaginary prescribes a sensibility of matter in place and time: breast milk for six months is one example that confers a sense of urgency to this period. This is not necessarily at odds with parents’ own hopes for their children, which were often aligned with biomedical ‘best practice’. However, this sensibility exerted expectations or practices outside what I learned was deemed to be ‘good parenting’. This was shaped by context that disavowed stable parameters of time, place and relationships.
Anticipation is a virtue (Adams et al. 2009:247), directing moral prescriptions of right and wrong. As a result the impetus to care (and concomitant blame if they do not adhere) falls on mothers. This in spite of work that highlights the importance of caregivers beyond the mother (Tomlinson (2013). The moral impetus to intensify care during certain time-brackets is particularly challenging in precarious contexts. Work was insecure for many I met at the soup kitchen, and access to food (one modality in which nourishment can be provided) thus also in flux. Seasons of intense care differed. Women interlocutors described pregnancy as a limited season of intensified support. After they gave birth, food and support were withdrawn and focus transferred to infants, often leaving mothers bereft, psychologically vulnerable, and further hindered in their ability to foresee nourishment. As Mandy said during a focus group: “Now I get nothing in the house – he [her husband] says Alia must get everything – he says my time is over!” Jenna agreed: “When you are pregnant, everyone knows you are hungry all the time, everyone says “here: eat.”
Women sought to nourish their infants by methods not recognised in the public health imaginary. One method of nourishing was by satisfying taste and accommodating desire. The centrality of food (much of it unhealthy by nutritional standards – icing sugar on cake being one example) to this modality of nourishment requires consideration of the socio-materiality of food which, in absence of sustained nutritional sustenance, served to ‘sweeten’ precarious times.
Taste and desire were socially shaped. Jenna described the hospital as having a poverty of people: “It’s family-less here, people –less here. It’s not for me.” Methods of nourishment were often learned through recipes passed down generationally, and distributed in a network of nourishment. Thus alienation from family was not conducive to nourishment. Passing on recipes in families and communities was shown to be a powerful kind of inheritance – binding people to place, garnering belonging (as contested as this was), forming and augmenting relationships. Jenna told me that her son was conceived in hope of winning a blessing from her and her partners’ families. Both families contested the match on grounds of race, Jenna said – the politics of belonging were shaped by skin, gender, parentage. A child was conceived in the hope of securing belonging, thickening the constellation of networks, and so in turn, nourishing. The social nature of nourishment thus exceeds the mother and child.
Many of the prescriptions encountered by Jenna and other mothers with whom I spent time arose from a biomedical preoccupation with brackets of time premised on anticipation. In response to evidence of loaded disparities between prescription and experience, attention to everyday ingestion looks beyond brackets of time in an approach to care that foregrounds the body, place, seasonality and inheritance. The myriad valences of time and forms of nourishment revealed were often at odds with biomedical prescriptions of ‘the right time’. This highlights the power of normative values of ‘good’ care. Value-laden systems of governance and prescription beg attention to inheritance and the logics that weave affect with capital, power, and the production and application of knowledge. The anticipatory logic that foregrounds the future brackets the present, already made precarious due to skewed inheritance and inequality. Ethnographic attention to the everyday pulls the background to the fore and allows the discourse that designates good to be considered in terms of embodiment in the everyday.
As Jenna rubbed her finger along the rim of her baby’s ear, the imaginary of the ‘first thousand days’ was second to a mother’s own anticipation, hope and dread (not all of which I was privy to). This window opened a brief moment where the number of days since conception was central to governance but not the mother. Within that room the nurse, the hospital, (and perhaps the researcher) foregrounded prescription based on an imaginary of a universal time bracket. Jenna’s everyday experiences and modes of seeking and foreseeing nourishment spilled, as desire, taste, belonging, and affect are wont to do, from the brackets that draw boundaries that good mothers, supposedly, do not transgress.
*pseudonyms used as discussed with interlocutors
Carina Truyts lectures and is developing the Social Anthropology programme at the newly established Sol Plaatje University in Kimberley, South Africa. She is a member of Professor Fiona Ross’ research group on the anthropology of the ‘first thousand days’, and conducted her Master’s thesis research on nourishment in the Cape Winelands. At present her interests lie in food, care, the body, time, precariousness, and pedagogy. She can be contacted at firstname.lastname@example.org
Adams, V. Murphy, M. and Clarke, A. 2009. Anticipation: Technoscience, life, affect, temporality. Subjectivity. 28:246-265.
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Harbers, H. Mol, A. and Stollmeyer, A. 2002. Food matters: arguments for an Ethnography of Daily Care. Theory Culture Society. Vol. 19 (5/6):2017- 226.
Klein, M. 1985. Love, Guilt and Reparation and other works. London: The Hogarth Press.
Kruger, L-M. Schoombee, C. 2010. The other side of caring: abuse in a South African maternity ward. Journal of Reproductive and Infant Psychology. Vol 28 (1) 84 – 101.
Landecker, H. 2011. Food as exposure: Nutritional Epigenetics and the Molecular Politics of Eating. CSW Update Letter. UCLA Center for the Study of Women, UC Los Angeles. Online: http://escholarship.org/uc/item/6j50v781 [3/5/2014].
McLachlan, M. 2011. We can’t keep eating like this: food system change for sustainable health. Inaugural address delivered 25 October 2011. ISBN: 978-0-7972-1343-2.
Morgan, B. 2013. Biological embedding of early childhood adversity : Toxic stress and the vicious cycle of poverty in South Africa, Ilifa Abantwana. Research and Policy Brief Series November 2013.
Richards, A.I. 1932. Hunger and work in a savage tribe: a functional study of nutrition among the southern Bantu. Glencoe, Illinois: Free Press.
Roseboom, T. J., van der Meulen, J. H., Ravelli, a C., Osmond, C., Barker, D. J., & Bleker, O. P. 2001. Effects of prenatal exposure to the Dutch famine on adult disease in later life: an overview. Twin Research : The Official Journal of the International Society for Twin Studies, 4(5), 293–8.
Thayer, Z.M. and Non, A.L. 2015. Anthropology meets epigenetics: Current and Future Directions. American Anthropologist. Vol. 117 (4):722-735.
Tomlinson, M. 2013. Caring for the caregiver: A framework of support. In Berry, L., Biersteker, L., Dawes, A., Lake, L., Smith, C. (eds). South African child gauge: 2013. Cape Town: Children’s Institute, University of Cape Town.
Van der Waal, K. 2014. (ed). Winelands, Wealth and Work: Transformations in the Dwars River Valley, Stellenbosch. Pietermaritzburg: University of Kwa-Zulu Natal Press.
 See van der Waal
 This approach towards nourishment takes from McLachlans’ (2011) call toward integrative approaches to food systems
 See Harbers Moll and Stollmeyer (2002) argumetns that foregrounds the socio-materiality of food in an ethics-of-daily-care approach.
 See Thayer and Non (2015).
 A spectacular example of the effects of implementing policy based on dictums of truth was the reversal of policy for breastfeeding for HIV positive mothers which had devastating long-term effects, as discussed by
 See Kruger and Schoombee (2009) for an account of abuse in a South African maternity ward.
 See Harbers Moll and Stollmeyer (2002)
 and its centrality in the formation of relationships beyond the nutritive substance foregrounded by Audrey Richards (1932); and the ‘good breast and bad breast’ – a view of relational formation discussed by Klein (1985).
In “The Time that Is Left”, Giorgio Agamben sketches the problem of messianic time. He writes that the messianic is “not the end of time, but the time of the end. (…) the time that is left between time and its ending” (Agamben 2002, 2). In the following article, I want to take his reflection on messianic time as a starting point to think about the treatment of epidemics in such time that is left. I will take tuberculosis in Western Europe, on which I have done ethnographic research since 2006, as an example. For tuberculosis, there have been numerous announcements in medicine of the near end of disease with a promise of societies’ salvation, most famously by Salman Waksman in his Nobel Lecture of 1952. And yet, the end of this disease has never occurred, neither in the Global North, and even less so in the Global South. I will conceive of the time between the announcement of men’s medical salvation from disease and its accomplishment, the actual conquest of disease, as medicine’s messianic time. During this time that is left, tuberculosis has come to exist as a “disease without a future” (Kehr 2012), a disease that should not endure, that should no longer exist. I argue that tuberculosis can therefore only be conceived of in the form of a revenant, even if it has never been actually gone. Yet how is such a revenant treated in Western Europe today? How do patients live with this revenant disease they should not have after all? In sum, how does medicine’s messianic time shape the life with and reaction to a disease whose end was announced but has failed to arrive?
Agamben’s reflection on Messianic Time
In anthropology, there has been much work on issues of time in science and medicine. Especially the future has come to play a critical role in thinking about medicine today. Anthropologists have shown that future thinking operates at the heart of such diverse fields as medical prognosis, especially in cancer treatments (Jain 2013) or end of life care (Kaufman 2005), but also in the realm of public health, where future epidemic threats are tied up in rituals of scientific prophecy, where the known and the unknown are productively put to play, as Carlo Caduff has argued (Caduff 2014). And yet, the figure of the prophet or the prophetic – the future time and the unknown – is not the only mode at stake in medicine and public health. As important is a different temporal mode: messianic time. In his essay, Agamben explicitly distinguishes the messianic from the prophetic or apocalyptic. Messianic time, Agamben writes,
“is not the end of time, but the time of the end, (…) the time that contracts itself and begins to finish” (2). (…) “It is the time that it takes for time to come to an end, to accomplish itself. Or, more exactly, the time we need in order to accomplish, to bring to an end our representation of time. (…)– in this sense: the time which is left to us” (5).
For Agamben, the messianic is operational time, that is time in which we are, in which we act. It is real time, the time that is left to us after the messianic event. In messianic time, other than in prophetic time for example, the messianic event has already occurred, it has already happened, and salvation is already accomplished. And yet, as Agamben shows, to be really achieved, salvation needs supplementary time, so that it can be brought to an end.
In Agamben’s conception, the time of the end is always extended time as much as contracted time. Logics of continuous progress and linear development do not work out in messianic time. Rather, the time of the end allows to account for inversions of past and present as much as for salvation’s temporal thickness and extension, that goes beyond one particular event. Messianic time thereby stretches and is in need of active instantiation, of active perfection, for salvation to be accomplished.
Conceiving of time beyond the structure of event, beyond beginnings and endings, seems particular important in the field of medicine and public health, in which attempts to end diseases are – of course – paramount, but so are recurring failures to do so. Tuberculosis control is no exception here. This is why I want to use Agamben’s conception of messianic time to think about TB control as an extended time of the end of disease, as a process over time, not a point in time, as the time it takes to end the TB epidemic. It is the time that is needed to accomplish the end of disease after a messianic event, a cure, and thus realize men’s definite salvation from this disease.
In TB control, messianic time is the time which is left in order to treat, cure and finally end tuberculosis. Messianic time then, is the present and future ending of this disease. It is the time that is left to end TB. It is one of medicine’s temporal modes. This time, if we follow Agamben, is active time, operational time. Medicine’s messianic time starts with a messianic event, a cure, and extends its operations in the future through continuous action. Since for the end of disease to be truly accomplished, messianic time needs supplementary time and thus deferment. Salvation needs constant perfection, medicine needs more time to develop better, more effective agents, different compounds, more combinations.
Ending and Embodying Tuberculosis Today
A renewed aspiration to end TB on a global scale has been simmering since the early 2000s, after decades of neglect of international TB control, with creations like the Global Fund or the TB Alliance. This renewed ambition becomes nowhere clearer than in the brand new “Global Plan to End TB 2016-2020”, whose motto is to “shift the paradigm from barely controlling the epidemic to ending it altogether.” In the executive summary of the Plan, a call for the perfection of existing treatment and control strategies coexists with a call for more novelty, more innovation, and more knowledge. “The Global Plan demonstrates that huge gains can be made by improving the quality and reach of existing medical interventions. But, these will only get us so far. Without the development and deployment of new tools, we cannot end TB”, so it says.
In the Global Plan, messianic time, that is the time that is left to end disease, has already started, but is in need of perfection, in need of action. What is needed is more investment in the time that is left, to bring the time of disease to an end.
In contrast to this renewed interest and investment in TB, in routine TB control in the rich countries of the North, where I have done my ethnographic fieldwork, messianic medicine meanwhile has contracted the time of the end, as if the end of disease had already arrived. This anticipation of the end of disease, this constantly making present of its end, makes it unconceivable for some patients to acknowledge tuberculosis as an event in their lives, to embody it. This was the case for Rebecca, a white, middle class French woman, who had TB and talked in the following words about it:
She (the radiologist) told me that it was tuberculosis. Voilà. I didn’t quite believe her. Because for me, this is a disease which is disappearing … For me, TB, is something you have if you are not vaccinated, and if you are vaccinated, you don’t have it … So for me, what is it, this disease? It’s an old disease. For me, it’s really something that has disappeared, because one talks less and less about it. … Tuberculosis, it’s a strange disease (une maladie étrangère), a disease that I didn’t suspect at all. For me, it’s a vaccine that you get when you are a kid, and that’s it. That’s all. Finished. (…) It’s really, (…) a disease of the middle ages. Dirt, I don’t know, tramps, bad hygiene, and all the rest of it. Famines, you know, all these little things, but not today, not in the environment we live in. We eat well – how to tell you – we don’t live in poverty, we are not, you see, all these things, which make this disease happen … If we were, I don’t know, in Africa, then – ok (là, je veux bien). Because over there, you get TB with all these other diseases … But not here, not in France (Rebecca, white secretary, married with two children, lives in Paris, interview transcript, October 13, 2006).
Rebecca beautifully expressed what she felt like when she was diagnosed with TB: a paradoxical experience of disease, a kind of counter-intuitive embodiment of the past, where TB can only exist as a revenant, because it should have already been ended, dead, gone – at least in the global North.
So why should we think through such abstract temporal and quasi-religious ideas about science, diseases and epidemics? To understand the differing temporal and promissory logics of medicine and public health as well as their powerfulness not as accessories, but as constitutive of these fields: the stubborn insistence on, and search for the near ends of diseases and epidemics – which is indeed medicines raison d’être – despite history’s many examples of failures; to understand the messy medical practices in the time that is left, that can lead to calls for more economic and scientific investments in a desire of synthetic salvation, but also to medical futilities and counter-intuitive embodiment, as the example of Rebecca has shown. If one wants to be able to grasp the meanings of such epistemological contradictions and everyday practices as well as their consequences for the experience of disease, one should supplement the exploration of medicine’s economies and technologies of disease control with an interrogation of their inherent faiths, hopes and desires, in which time plays a central role. Messianic time is one of medicine’s temporal modes, that holds together the unstable worlds of science and public health, and that links their counter-intuitive, counter-factual and paradoxical histories, presents and futures, beyond clear temporal divisions. In messianic time, there is no such thing as linear time. Messianic time is full of contradictions, deferments and realisations, which are a productive means to think about medicine as a messianic enterprise with conflicting practices, discourses and temporalities.
Janina Kehr is a lecturer and post-doctoral researcher at the Centre for Medical Humanities, University of Zurich, with an interest in public health, the state, and politics of time in medicine. She received her Ph.D. in anthropology with a dissertation from the Ecole des hautes études en sciences sociales Paris and the Humboldt University of Berlin, entitled « A Disease without a future. An Anthropology of tuberculosis in France and Germany ». Her new research project concerns austerity medicine in contemporary Spain. She therein investigates public health infrastructures at the intersection of debt economies, state bureaucracies and peoples’ experiences.
Agamben, Giorgio. 2002. « The Time That is Left ». Epoché 7 (1): 1‑14.
Caduff, Carlo. 2014. « Pandemic Prophecy, or How to Have Faith in Reason ». Current Anthropology 55 (3): 296‑315. doi:10.1086/676124.
Jain, Sarah S. Lochlann. 2013. Malignant How Cancer Becomes Us. Berkeley: University of California Press. http://public.eblib.com/choice/publicfullrecord.aspx?p=1323166.
Kaufman, Sharon R. 2005. And a Time to Die: How American Hospitals Shape the End of Life. 1re éd. Chicago and London: University Of Chicago Press.
Kehr, Janina. 2012. « Une maladie sans avenir. Anthropologie de la tuberculose en France et en Allemagne ». Paris: Ecole des hautes études en sciences sociales.
Tobias Rees’s Plastic Reason: An Anthropology of Brain Science in Embryogenetic Terms by Nima Bassiri
by Tobias Rees
University of California Press, 2016, 352 pages
In the prefatory pages of Plastic Reason, Tobias Rees explains that his ethnographic study of the lab of French biologist Alain Prochiantz — one of the earliest proponents, technicians, and conceptual architects of neuronal plasticity — is ultimately “about the emergence of possibilities where before there were none” (xiii). If we are to appreciate the conceptual transformation in neuronal research that took place in France and specifically in Prochiantz’s lab in the late 1990s, Rees insists that we must view this development not only as the formation of a new style of neuroscientific thinking but also as the emergence of an entirely new object. Rees writes, “Within the roughly one hundred years I cover here (from the 1890s to the 1990s), what the brain is changed many times over. […] Conceptually speaking, each one of these changes mutated what the brain is, and each mutation changed, however slightly, the analytic focus of the neuronal sciences” (89). Plastic Reason, then, has a double focus: on the one hand to narrate and rationalize the emergence of Prochiantz’s specific doctrine of neuronal plasticity and, on the other hand, to take stock of the very object that emerged, “the enactment of a brain that is neither a fixed chemical machine nor an already wired computer, but instead a living organ characterized by ceaseless cellular becoming” (195).
Central for Rees is the claim that Prochiantz’s specific conception of plasticity — namely, neuro-cellular embryogenesis that continues into adulthood — was radically different from, and effectively sought to dethrone, the preceding dominant view of plasticity defined by synaptic rewiring. This is the point that remains central for Rees: the most basic material assumptions of the brain were being challenged; plasticity did not simply refer to (synaptic) variability against the backdrop of (neuronal) fixity but, as far as Prochiantz was concerned, brain matter was itself an inexhaustible transformation. “For Alain [Prochiantz] and his colleagues … neuronal growth, whether of new neurons or of the fine structure, occurred throughout life. […] [T]he brain was never actually fully developed” (215). Rees argues that for Prochiantz the brain is not merely a machine that reconfigures itself but an always-developing organ, a process of constant self-differentiation.
Plastic Reason is organized into chapters that offer a variety of entry points into Prochiantz’s lab. Together they comprise an ethnographic assemblage that collectively illuminates the combined historical, sociological, theoretical, experimental, and ethical stakes of the research. While each chapter attempts to reckon on its own with the novelty of this emerging account of the brain, they are all also focalized around a fairly specific technical inquiry: can homeoproteins in the brain continue to transfer between cells, thereby maintaining an embryogenetic function, at a neuro-cellular level, into adulthood? To ask whether cellular development continues into adulthood is effectively to wonder whether the human being is always in a state of perpetual neuronal development, never fully nor finally formed.
Yet what Rees recounts is less the technical struggle in experimentally confirming homeoprotein transfer but rather the very difficulty in proposing the possibility of continued developmental activity in adult brains, precisely because this hypothesis flew in the face of the dominant rationality of institutional brain research. Prochiantz’s plasticity “undermined the old comprehension of what the brain ‘is’ (an immutable structure) and how one has to study it (as a neurochemical machine with the synapse as the only dynamic element)” (50). So Plastic Reason is as much a study about the emergence of a new brain-object as it is an examination of French academia and the forces that arbitrate the boundaries between marginal knowledge claims and scientific authority. Prochiantz, a rising star in his early career, became an academic pariah during the 1990s when he began promulgating his unpopular theory of neuro-cellular plasticity, viewed by many of his colleagues as either experimentally baseless, scientifically peripheral, or institutionally unpractical. His lab shrank in size and funding, while his notoriety grew as an anomalous figure who drew more from his relations with French artists than with his fellow scientists. Rees charts Prochiantz’s professional development, however, in order to demonstrate the suppleness of social or “relational” networks and the ways in which these complex and morphing sociological constellations function as webs upon which certain epistemic possibilities, over others, come to be affixed. It was not until the late 1990s and early 2000s, with the experimental confirmation of adult neurogenesis in labs in the United States, that Prochiantz’s work was vindicated. Indeed, in 2006, he was elected professor at the Collège de France.
And so, in this regard, Plastic Reason is perhaps most critically a meditation on the very nature of scientific knowledge production. How can a practitioner enact and animate a scientific possibility as such where no such possibility yet exists? Should we view this reckoning with the impossible as epistemologically different from, say, the composition of a new scientific theory or the constitution of an innovative experimental object? As Rees suggests, the greatest challenge for Prochiantz did not take place in the lab but in his attempt to overcome a historico-conceptual hurdle — a century-long supposition embedded into the very fabric of neuroscientific reasoning that, in whatever way the brain might be imagined, it would always be imagined as an invariably static object, neuronally fixed and materially immutable. What recourse can scientists have when they seek to press against the very limits of what is institutionally acceptable or conceptually permissible? Experimental results alone may not, Rees suggests, contain the veridical force necessary to transform a premise roundly rejected as impossible into a premise generally accepted as true.
Prochiantz’s course of action was to grapple directly with the presumed impossibility of adult cellular neuroplasticity. This direct confrontation meant adopting a different sort of epistemic labor, a manner of thinking that Prochiantz casually described, what Rees formally labels, a “nocturnal” approach to scientific inquiry. For Rees, Prochiantz’s “nocturnal” labors, which subtended his scientifically standard bench research, comprised a willingness to engage in high speculation and to follow creative intuitions down whatever paths they might lead. In abstract terms, this meant an attempt “to open a not yet existing conceptual horizon,” to “[think] the yet unthought” (138), to consider “the possibility that things could be different from the way they were currently imagined to be” (102). Somewhat more concretely, Rees documents Prochiantz’s inclination to situate speculative endeavors at the forefront of his research, to engage in a kind of epistemic experimentation, a philosophical poeticism, that relied on intuition, contingency, and association.
The most notable instantiation of Prochiantz’s nocturnal practice involved a kind of genealogical work, a perhaps unexpected activity for a contemporary neuroscientist. Prochiantz confronted the history of biology, reading and rereading the works of embryologists, anatomists, anthropologists, evolutionary biologists — figures as diverse as Claude Bernard, Alan Turing, D’Arcy Thompson (the list is rather long, actually). Prochiantz engaged in this history precisely in order to understand how these former innovators altered the terms of biological research and how they themselves advanced scientific possibilities that were not previously imaginable. Yet Prochiantz’s historical submergences and reconstructions were intentionally unfocused, trans-disciplinary, and almost capricious. As Rees explains, Prochiantz brought “authors together and [treated] them as if they were in a steady conversation, even though they were not” (134).
Yet as Rees reconstructs Prochiantz’s reading list, what emerges is a veritable archive — not a linear or obvious development of theories of the brain’s flexibility but, rather, an unexpected genealogy of the plastic. What holds this archive together, however, is Prochiantz himself — his unruly interpretations and surprising expropriations; it is a genealogy of neuro-cellular plasticity that Prochiantz simultaneously constitutes and creatively re-reads. Over and against the historically entrenched supposition that the brain is (and must remain) neuronal fixed, the hurdle that vocally proclaimed the very thought of adult cellular neurogenesis to be impossible, Prochiantz sutured together a new condition of possibilities on which his own hypothesis and experimental results could find sure footing, historically and conceptually. Rees insists that for Prochiantz, biological matter is a process, a performance, a becoming; this is an observation that Prochiantz can make about the brain by reading from an archive of scientists that never really discuss the brain at all. For Prochiantz, nocturnal work is a productive and insight-inducing recklessness of thought that actively pushes against the limits of scientific possibilities.
Rees seems to imply that the most creative scientists are simultaneously nocturnal epistemologists of sorts. They are not simply capable of gleaning scientific ruptures of the past but, insofar as they can glean those ruptures, they are inventively inclined to institute ruptures of their own. Prochiantz was cautious not to consider the plastic brain to be a simple exchange of one stable neuroscientific paradigm with another. Rees recounts Prochiantz’s continued assertions — fervent and in some cases almost frenzied — that if the plastic brain were to truly be understood as perennially developing, then it must altogether belie the promise of fixity. The plastic brain is fundamentally transforming; it is unstable and “incoherent.” And so must be the science that studies it. This is perhaps the subtlest and most provocative of Rees’s underlying claims — a brain defined by embryogenetic incoherence can only be encapsulated by a transformational rationality, a plastic reason.
One of the most compelling chapters in Plastic Reason is the last one, organized around the question of ethics. Rees asks, “What venues for living a life, for being neurologically human, have the neuronal sciences opened up since 1891” (198). Rees presents a comparative reading of the ethical possibilities that have inhered in neuronal doctrines since the late nineteenth century in an effort to see what new modalities of ethical self-fashioning are made available in Prochiantz’s account of neuro-cellular plasticity. As Rees explains, the ethical implications of the plastic brain are brought into focus when we consider “the particular ethical space a given neuronal conception of the brain provides for being human” as well as what “unique ethical equipment for living a life it provides to all those who life their life, deliberately or not, as brains” (197). Rees suggests that plasticity offers a kind of ethical promise in its repudiation of biological fixity that no previous neuronal doctrine was able to provide. With plasticity, the human itself can now be conceptualized “from the vantage point of a brain believed to continuously change, to undergo ceaseless morphogenetic transformations” (217). The fundamental attribute of a “neurological human” defined by plasticity is precisely “openness, its openness toward the future, its capacity for ongoing adaptation” (217).
Rees’s assertions in this final chapter are both exciting and admirable, given that they are organized around the urgency to consider what ethico-political possibilities can be unearthed from neuroscientific research. And yet it is precisely this analytic unearthing that some readers might find slightly strained. Rees offers a serial examination of major neuronal paradigms through textual readings of their central physiological suppositions from which he draws out their various ethical possibilities. But in some cases, Rees’s work of unearthing underlying ethical commitments feels closer to a quick and potentially injudicious extraction of sorts. It raises, perhaps inadvertently, an important question for scholars interested in confronting the boundaries between the science and ethics: how reliably can ethical paradigms be drawn out of discursive systems that are not formalized as ethico-political utterances? How viably can scientific propositions, on their own, be translated into ethical claims?
Translational scholarship that seeks to excavate the ethical possibilities of scientific research risks overlooking the ethical and political constraints that scientific doctrines actually afford. Ethical realities inhere in science not just in terms of the possibilities that are theoretically capable of being abstracted from them but because scientific research is ultimately embedded within larger institutional frameworks, power structures, and discursive matrices. There is no doubt that ethical and political norms circulate throughout the brain sciences. These norms in part fashion what researchers, expert readers, lay audiences, experimental subjects, and “neurological humans” will count as acceptable or obligatory. These norms usually determine (regulate, but not necessarily foreclose) what will be ethically available and accessible in the first instance, and they do so through the complexity of institutional, administrative, and discursive effects they have on subjects. This process of normative fashioning is obscured if we immediately and precipitously convert a physiological utterance into an ethical proposition; whatever ethical possibilities neuroplasticity may promise, what it will actually afford once it is fully stabilized as a dominant tenet in neuroscientific research and brain medicine is far from clear.
Rees ultimately characterizes his analysis in this final chapter as a “genealogy of morals,” a way of clarifying the ethical stakes of Prochiantz’s account of neuroplasticity by marking out its historical difference with prior neuronal theories. While he is never explicit about it, Rees does play favorites. Intrinsic value is attributed to the “openness” and transformative potentials of plasticity over the immovably static and mechanical determinations of the fixed brain. Openness is valuable; fixity is not. This is neither unexpected nor reproachable, but it does raise a question of what initially justifies these valuations. In a genuinely Nietzschean fashion, can we not ask: What is the value of these values? Why would any scholar — an anthropologist, a literary theorist, a philosopher — tend to value openness over fixity today? Undoubtedly, someone who defines herself according to her brain may have at her disposal the tools necessary to conceive of herself as transformative and capable of “ongoing adaptation.” But into whom will she, or is she being asked, to transform? What imperatives of adaptation, malleability, and adjustment are being forced upon her? When does openness to the future simply become pliability and compliance — and how can one resist such an appropriation?
These are the sorts of questions that warrant a degree of caution against immediately allying privileged biological concepts with ethico-political categories — that is, in transmuting the transformative openness of biological adaptation into a theory of human liberty. Rees, for his part, resists the urge to link plasticity to freedom, subtly criticizing the facile ways in which advocates of the older model of synaptic plasticity grounded liberty on the brain’s capacity to rewire itself. Indeed, Rees’s chapter on ethics is less an argument than an inquiring: what ethical possibilities can plasticity provide for the neurological human? Here I am reminded of an almost passing footnote Emmanuel Levinas makes in Otherwise than Being (1974): “The body is neither the obstacle that opposes the soul, nor the tomb that imprisons it, but that by which the self is susceptibility itself. The extreme passivity of ‘incarnation’ is to be exposed to sickness, to suffering, to death, it is to be exposed to compassion and, as self, to the gift that costs.” Is it disagreeable to substitute “brain” for “body,” to read “neurological human” where Levinas writes “incarnate subject?” If not, then perhaps the openness at the heart of Prochiantz’s cellular neurogenesis is not an engine of overcoming, but an expression of exposure and vulnerability, an original passivity that could ultimately signal a fundamental responsibility before any kind engagement with liberty. Whether the inevitable stabilization of neuroplasticity within the institution of brain research and biomedicine will make such possibilities available for future neurological humans is perhaps the issue that remains most open of all. These final concerns are not rebukes but merely examples of the rewarding interchanges that Plastic Reason facilitates. It remains a compelling ethnographic study of a major upheaval in brain research and a provocative engagement with the nature of scientific knowledge production.
Nima Bassiri is Collegiate Assistant Professor of Humanities at the University of Chicago. His current research focuses on the role neurological discourse has played in the historical and conceptual refashioning of the self throughout the nineteenth century, particularly in terms of how it augmented and transformed earlier, classical conceptions of personal identity.
 Emmanuel Levinas, Otherwise than Being or Beyond Essence, trans. Alphonso Lingis (Duquesne University Press, 2002), 195 n. 12 (translation modified). Emmanuel Levinas, Autrement qu’être ou au-delà de l’essence (Martinus Nijhoff, 1974), 139 n. 12.
Check out the first instalment of this month’s In the Journals!
The field of Global Mental Health has very quickly engendered a new institutional and research landscape, having recently established a number of its own research centres and training programmes. Under the banner of this field, there has also been an explosion of international research programmes and interventions which have received significant financial backing from a range of international donors, development agencies, and governments.1 In sum, Global Mental Health has increasingly captured the imagination of a wide range of stakeholders and has made major strides in establishing mental health as a priority within the global health arena. Indeed, a recent Google search for ‘Global Mental Health’ on 1 November 2009 identified approximately 62,300 related sites, of which over 85% of them were registered since 2008 (Patel & Prince,2010). This increasingly powerful field has, however, also elicited a range of critical responses, with growing controversy over its conceptualisations, goals and imagined outcomes (Campbell & Burgess, 2012; Kirmayer & Pedersen, 2014; Mills & Fernando, 2014).
Valerie Webber, Janet Bartlett & Fern Brunger
HIV and hepatitis B and C are viruses that have been unduly set apart from other infectious diseases in terms of the symbolic pull they exert and the anxiety they produce. This is reflected in health care policy and protocol. Hospitals, health care regions and colleges of physicians and surgeons create guidelines and procedures that single out HIV or hepatitis B and C as requiring special attention. This paper examines such surveillance and stigma in blood-borne pathogen protocol, using the example of recently refined policies in Newfoundland, Canada. We argue that policies distinguishing HIV and hepatitis B and C as requiring special treatment are produced by a combination of four factors: (1) the ideological and political function of risk discourse, and how this overshadows actual measures of probability, (2) the historical association of HIV and hepatitis B and C as belonging to ‘deviant’ bodies, (3) the normalizing function of health surveillance mechanisms and (4) the contradictory image of the ‘sick’ doctor. It is crucial that health professionals be critical of bylaws that single out HIV and hepatitis B and C as these guidelines are unjust and may impede efforts to control the disease.
Pamela Wakewich, Brianne Wood, Crystal Davey, Ashlie Laframboise, Ingeborg Zehbe & on behalf of the ACCSS group
Regular Papanicolaou (Pap) screening has dramatically reduced cervical cancer incidence in Canada since the 1950s. However, Indigenous women’s rates of cervical cancer remain disproportionately high, a factor which is not acknowledged in national media or in educational materials reporting Canada’s new cervical cancer screening guidelines. Here, we present findings from a cervical cancer screening initiative in Northwestern Ontario. Based on participatory action research, we worked with 10 First Nations communities in the Robinson Superior Treaty area to increase awareness of cervical cancer risk, develop culturally sensitive tools for screening and education and test the efficacy of human papillomavirus (HPV) self-sampling as an alternative to Pap cytology. We conducted 16 interviews with health care professionals and 9 focus groups with 69 women from the communities. A central theme for both health care providers (HCPs) and community members was the colonial legacy and its influence on women’s experiences of cervical cancer screening. This was evidenced by a strong sense of body shyness, including shame related to sexuality and sexually transmitted infections, concerns about confidentiality in clinical encounters and distrust or caution around HCPs. Reaffirming women’s traditional caregiving and educational roles, enhancing mother and daughter communication, improving cultural sensitivity in health care and education and adoption of HPV self-sampling to increase women’s privacy and control of the cervical cancer screening experience were endorsed. We argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening.
Sara Komarnisky, Paul Hackett, Sylvia Abonyi, Courtney Heffernan & Richard Long
For First Nations tuberculosis (TB) patients in the Prairie Provinces, the past matters. In this paper, we draw on the analysis of historical statements made by 20 First Nations interviewees with infectious TB to explore the function of talking about the past in relation to a current diagnosis of TB and the implications of historicity on contemporary TB prevention, programming and care. Despite interviewees not being asked directly about past contexts of TB treatment, they talked about historical topics such as the removal of First Nations TB patients from communities for treatment in distant sanatoria, painful and invasive surgical procedures once used to treat TB, and the attitudes that persist due to the ongoing failure to eliminate TB from First Nations communities. In these narratives, past experiences of TB treatment are intimately connected to present-day experiences and context. What happened ‘years ago’ profoundly affects the health and well-being of people diagnosed with TB today. Attempts to eliminate TB among First Nations peoples in Canada must also address its historical legacy. Understanding the contemporary effects of past TB treatment and mistreatment among First Nations peoples in the Prairie Provinces can also be seen as part of a larger project of truth and reconciliation in Canada, which involves both Indigenous and non-Indigenous Canadians.
Isaac Warbrick, Andrew Dickson, Russell Prince & Ihirangi Heke
In this paper we consider what impact a biopolitics that creates a compliant self-governing weight-focused population has had on Māori health in Aotearoa/New Zealand. We frame this discussion with three vignettes that in different ways demonstrate the deleterious effects of the individualisation of health on Māori. We argue that the current biopolitics is best explained as ‘the health of Maoris’ not ‘Māori Health’. To counter this current biopolitics we put forward an alternative epistemology, the ‘Atua Matua’ framework. This epistemology pays respect to a Māori view of health that is holistic, encompassing physical, emotional, spiritual, cultural and familial well-being and does not give ground to the requirement for individualism so prevalent in neoliberalism. Finally, we consider what this new epistemology might offer to the public health agendas in Aotearoa and other countries where indigenous populations suffer ill health disproportionately. Thus, our implications have potential not only for Māori health but human health in general.
This paper contributes to the literature on the phenomenon termed mHealth through a critical examination of wearable posture-tracking technologies. The paper specifically reports on a qualitative document analysis of promotional materials for three devices, carried out with the aim of assessing their mode of operation, the logic underpinning their development and their purported benefits for users. Findings initially highlight how Lumo Lift and Lumo Back, made by the company Lumo Bodytech Inc., and Prana, made by Prana Tech LLC, are designed to enable haptic surveillance and discipline whereby the body is monitored and ‘reprimanded’ through the touch. These forms of interactive posture training are underpinned by scientific insight from fields such as biomechanics and by data science on consumer posture habits. In turn, the benefits for those engaging with commercial posture-tracking devices are said to include, unsurprisingly, better posture, but also a less tangible form of ‘optimised’ living. With these findings in mind, it is argued that the arrival of interactive posture technologies has two main implications. In one sense, whereas good posture has historically been imagined as a dividing line between ‘civilized’ humans and ‘uncivilized’ others, devices such as Lumo Lift make posture into a matter of posthuman optimisation: humans and non-humans are enfolded in the pursuit of self-betterment. In another sense, posture technologies are important in emboldening the wider mHealth phenomenon, privileging as they do the idea that commercial technologies are now allies and not foes when it comes to improving health.
Mare Knibbe, Marten de Vries & Klasien Horstman
This article offers a critical analysis of how to address social inequalities in mental health. In public mental health, inequalities are commonly construed as a problem of reach, implying that existing mental health expertise often fails to reach low-income groups. We discuss two critiques on the ‘reach-paradigm’ in mental health promotion: the impoverishment of idioms of distress and the tendency to transform complex political issues into clinical ones that are assumed to be backed by evidence. Furthermore, we present the findings of our ethnographic research of an alternative approach to mental health promotion that used media storytelling focused on local knowledge and social context. Our analysis is guided by anthropological research on idioms of distress and sociological literature on health promotion and social inequalities.
Spenta Kakalia & Hasan H. Karrar
Since 2005, Pakistan has witnessed a net increase in polio, reaching a 15-year crest in 2014 when 306 cases were reported. Pakistan, along with Afghanistan, is one the remaining two polio-endemic countries. The numbers of cases reported in Pakistan in 2014 were far in excess of Afghanistan (28) and Nigeria (6). This paper focuses on the endemic militancy plaguing the country that has recently created grave obstacles for countrywide polio eradication. We argue that the relationship between polio and militancy in Pakistan has had two facets. First, polio vaccination efforts have become a casualty of militancy: over the last decade, polio vaccination was periodically banned in militant strongholds, large cohorts of children remained unvaccinated in remote frontier regions as vaccinators were unable to reach them, and anti-vaccination discourses in many parts of the country deterred others from vaccinating their children. The second relationship between the presence of polio in Pakistan and militancy is one where state-led polio vaccination efforts became a target of militancy. This was through the deliberate killing of polio workers; since July 2012, 71 contractual government employees tasked with administering polio vaccines have been killed, posing impediments to vaccine coverage. This paper concludes that in addition to implementing policies to improve vaccination coverage, endemic militancy must be addressed before polio can be eradicated.
Jade Boyd & Thomas Kerr
In Canada and other western nations there has been an unprecedented expansion of criminal justice systems and a well documented increase in contact between people with mental illness with the police. Canadian police, especially in Vancouver, British Columbia (BC), have been increasingly at the forefront of discourse and regulation specific to mental health. Drawing on critical discourse analysis, this paper to explores this claim through a case study of four Vancouver Police Department (VPD) policy reports on ‘Vancouver’s mental health crisis’ from 2008 to 2013, which include recommendations for action. Analyzed is the VPD’s role in framing issues of mental health in one urban space. This study is the first analysis to critically examine the VPD reports on mental health in Vancouver, BC. The reports reproduce negative discourses about deinstitutionalization, mental illness and dangerousness that may contribute to further stigma and discrimination of persons with mental illness. Policing reports are widely drawn upon, thus critical analyses are particularly significant for policy-makers and public health professionals in and outside of Canada.
Maria J. Ferrera, Rebecca T. Feinstein, William J. Walker & Sarah J. Gehlert
The risk of African American women dying from breast cancer is estimated to be 41% higher than that of White women throughout the USA. Using a community-based participatory research (CBPR) perspective, this qualitative study elicited attitudes, beliefs and concerns about breast cancer and its treatment amongst African Americans living in Chicago. Five hundred and three women and men were recruited from 15 of Chicago’s predominantly African American South Side neighborhoods. Participants were interviewed in 49 focus groups, 2–3 focus groups representing each neighborhood. Grounded theory was used to analyze data. A prevalent theme in the analysis was a general sense of mistrust amongst African Americans towards breast cancer treatment and the health care system at large. This theme involved notions of being treated like a guinea pig; living in the legacy of Tuskegee and other forms of historically rooted experimentation on African Americans; and being maltreated because of race. These findings suggest that historical and contemporary incidents remain a point of debate. Findings warrant the promotion of increased cultural sensitivity amongst health professionals regarding this historically rooted mistrust and its present-day implications.
Public health advocates aim to maximise affordable access to good quality essential medicines. This goal often conflicts with the profit-seeking ambitions of the pharmaceutical industry. Since the World Trade Organisation’s Trade-Related Aspects of Intellectual Property Rights agreement, the extension and enforcement of intellectual property (IP) rights has become the dominant discourse in global medicines governance. Public health advocates operating within this framework face significant obstacles and challenges. This paper presents an historical perspective to the contemporary debate over medicines and patents by examining the evolution of international medicines governance between the 1940s and 1970s. This research indicates that debates around IP and medicines were more advanced in terms of equity and access in the 1960s and 1970s than they are today. While acknowledging the existence of obstacles and challenges for advocates, the paper argues that alternative frameworks can and should be reasserted in global debates about medicines governance.
John I MacArtney
Having a ‘balanced lifestyle’ is often promoted as one way to manage the competing demands of contemporary life. For people with cancer, those demands are often multiplied, particularly when they use self-health approaches that seek to bring together an array of biomedical and complementary and alternative medicine therapies and practices. Yet, how balance is used in this complex healthcare milieu and the affects it has on experiences of illness are less well understood. In order to follow the polyphonic narratives involved, two case studies of women with breast cancer who used cancer self-health approaches were analysed. By exploring different modes of subjectivation in the case studies, balance was found to affect experiences of health in contemporary society in multiple ways. In particular, it was one way through which participants saw themselves as being able to maintain a critical engagement not just with their healthcare, but with their self and life.
For too long, medical/psychiatric and psychological studies, with focus on emotional sensitivity, personality traits, and correlation with psychopathology, have dominated research on self-injuring acts. The phenomenon thus has been defined as a predominantly medical issue. However, a large body of community prevalence studies show self-injuring acts to be a common phenomenon in society, and most of those who self-injure are unknown in psychiatric or other clinical settings. This article describes and analyzes the medicalization of self-injuring acts and argues a need to move research on self-injuring acts out of the medical paradigm. There is a need to explicitly explore the impact of social, cultural, structural, and gendered factors surrounding and influencing self-injuring acts. A non-medical approach, beyond the limits of the medical perspective, would feed research forward and create a more nuanced view on this widespread social phenomenon.
Esmée Hanna and Brendan Gough
Relatively little research on infertility focuses exclusively or significantly on men’s experiences, particularly in relation to emotional aspects. Evidence that does exist around male infertility suggests that it is a distressing experience for men, due to stigma, threats to masculinity and the perceived need to suppress emotions, and that men and women experience infertility differently. Using thematic analysis, this article examines the online emoting of men in relation to infertility via forum posts from a men-only infertility discussion board. It was noted that men ‘talked’ to each other about the emotional burdens of infertility, personal coping strategies and relationships with others. Three major themes were identified following in-depth analysis: ‘the emotional rollercoaster’, ‘the tyranny of infertility’ and ‘infertility paranoia’. This article then offers insights into how men experience infertility emotionally, negotiate the emotional challenges involved (especially pertaining to diagnosis, treatment outcomes and their intimate relationships) and how they share (and find value in doing so) with other men the lived experience of infertility.
Janne Huovila and Sampsa Saikkonen
What constitutes healthy eating is experiencing ongoing public debate, and this debate is increasingly taking place on the Internet. In this article, using a dialectical approach to analyse rhetorical discourse, we investigated how six highly popular Finnish nutrition counselling bloggers construct dietetic credibility and understanding. Their argumentation is compared to that of two academic experts contributing to the blog of the National Institute for Health and Welfare. Theoretically, we draw on Michael Billig’s notions on how thinking and understanding are pervasively argumentative and reflect wider socio-cultural contexts, and on the dilemmatic nature of common sense. We demonstrate how the popular Finnish nutrition counselling bloggers rhetorically constructed a more particularistic and individualistic understanding of healthy eating in their argumentation in critical opposition to the universalistic and population-based understanding. In the popular Finnish nutrition counselling bloggers argumentation, practical, subjective and moral knowledge was valued, alongside abstract, scientific knowledge. In contrast, the National Institute for Health and Welfare bloggers typically utilised population-based averages and causalities in their argumentation. We argue that arguing over healthy eating in the public domain is fundamentally an epistemic struggle, in which different forms of knowledge and ways of knowing are valued, and dilemmas related to healthy eating are deliberated.
The concept of careers has an extensive history in the sociology of health and illness. Among other things, the notion of a career has been used to describe the changing identities of patients diagnosed with mental illness, to identify distinct stages in the progression of various illnesses, and to recognize the cooperative efforts of hospitalized patients. However, the career concept may be reanalyzed as part of an analytical metaphor that makes salient both the agency of people with illnesses and the social structures in which they are enmeshed. This metaphor, ILLNESS IS WORK, can valorize and aid understanding of the identity work and actions of patients with chronic illnesses, particularly illnesses with a low degree of social recognition and medical prestige such as myalgic encephalopathy and chronic fatigue syndrome.
Philanthropic temporary sobriety initiatives such as Dry July, FebFast and Ocsober have become increasingly popular in Australia and have begun to spread to other locations both for their fundraising potential and as a grassroots public health measure to promote more responsible attitudes to alcohol consumption. This article presents findings from a series of in-depth, post-campaign interviews with FebFast 2014 participants and staff about how these campaigns can be understood as a form of public pedagogy or non-traditional learning that purposefully cultivates and suggests health-promoting meanings for embodied experience. It explicates the mechanisms of public pedagogies that rely on embodiment and, importantly, considers the learner’s perspective on the pedagogical process. Temporary sobriety initiatives are found to operate thanks to (1) a structure that prescribes and facilitates short-term changes and enforces compliance with a social contract of philanthropy and (2) messaging that guides participants in their evaluation and assessment of their experience of temporary sobriety as physically and psychologically beneficial, as well as socially informative and impactful.
Hannah Fairbrother, Penny Curtis, Elizabeth Goyder
Reducing childhood obesity is an international priority and children’s diets, food knowledge and practices have come under intense scrutiny in both policy and popular discourse. Notwithstanding evidence that health interventions which resonate with children’s own views are the most effective, there is still relatively little research which mobilises children’s everyday perspectives on food to inform public health policy. We report key findings from a qualitative study with 53 children aged 9–10, attending two socio-economically contrasting schools in the UK. The study explored children’s understandings of food in everyday life and their ideas about the relationship between food and health. Throughout the study, despite recent attempts to position schools as key sites for public health interventions, children consistently emphasised families as the locus for enduring food practices. The research highlights the value of listening to children and applying our understanding of their perspectives to ensure that public health initiatives work with the important influences on their diet and health that they themselves identify.
Emma Rose, Stephen Lonsdale
This study provides insights into how a participatory painting activity impacts older people’s subjective wellbeing. The study uses qualitative methods to analyze the findings, and employs qualitative data collection methods to examine how creativity conducted in an environment of relational connectivity is beneficial to wellbeing. The findings demonstrate that processes of re-imagining landscape contribute to participants’ retaining significant places in the mind when physical engagement is limited. The study reveals how the activity of re-imagining landscape provokes emotions and memories that help participants connect the past with the present, and to connect their older and younger-age selves, positively to reaffirm their older age identity. The paper reflects on the intervention as a form of encounter with landscape whose benefits are potentially therapeutic for different groups, particularly those for whom engagement with memories may assist with processes of adaptation or transition.
Daniel Grace, Matt Egan, Karen Lock
One approach to addressing the negative health and social harms of excessive drinking has been to attempt to limit alcohol availability in areas of high outlet density. The Licensing Act (2003) enables English local authorities the power to implement a Cumulative Impact Policy (CIP) in order to tackle alcohol challenges. More than 100 English local authorities have implemented a CIP in one or more designated areas. We examined local licence decision-making in the context of implementing CIPs. Specifically, we explored the activities involved in alcohol licensing in one London local authority in order to explicate how local decision-making processes regarding alcohol outlet density occur. Institutional ethnographic research revealed that CIPs were contested on multiple grounds within the statutory licensing process of a local authority with this policy in place. CIPs are an example of multi-level governance in which national and local interests, legal powers and alcohol licensing priorities interface. Public health priorities can be advanced in the delivery of CIPs, but those priorities can at times be diluted by those of other stakeholders, both public sector and commercial.
Alexandra B. Collins, Surita Parashar, Kalysha Closson, Rosalind Baltzer Turje, Carol Strike, Ryan McNeil
This study examines the influence of territorial stigma on access to HIV care and other support services. Qualitative interviews were conducted with thirty people living with HIV (PLHIV) who use drugs recruited from the Dr. Peter Centre (DPC), an HIV care facility located in Vancouver, Canada’s West End neighbourhood that operates under a harm reduction approach. Findings demonstrated that territorial stigma can undermine access to critical support services and resources in spatially stigmatized neighbourhoods among PLHIV who use drugs who have relocated elsewhere. Furthermore, PLHIV moving from spatially stigmatized neighbourhoods – in this case, Vancouver’s Downtown Eastside – to access HIV care services experienced tension with different groups at the DPC (e.g., men who have sex with me, people who use drugs), as these groups sought to define who constituted a′normative’ client. Collectively, these findings demonstrate the urgent need to consider the siting of HIV care services as the epidemic evolves.
Some vaccine supporters interpret vaccine uncertainties as a form of public ignorance caused by patients’ online research, failed physician–patient relationships, or inadequate knowledge translation. These interpretations often portray health professionals as homogeneously accepting of all scheduled vaccines for all patients. Nonetheless, health professionals may have limited knowledge about vaccines because the demands of their profession require them to have a broad understanding of a variety of health topics. In this article, I draw on data from interviews with twenty-six physicians and seven nurses in Alberta, Canada between 2013 and 2014, to examine how they used narratives to convey confidence, uncertainty, or doubts in vaccines. All interviewees supported the culturally dominant vaccine narrative that vaccines are essential to population health, yet they also spoke about uncertainties. Interviewees managed their uncertainties through tactics that confirmed accepting vaccination was the most desirable course of action. With each of these tactics, interviewees shared narratives about communicable diseases, vaccine benefits and risks to individual patients, and their reasons for trusting in medical science. When these narratives did not fully resolve medical uncertainties, health professionals often explained that either vaccination was beyond their professional responsibilities or that their uncertainties were irrelevant.
Karen Christensen & Jill Manthorpe
Many long-term care systems are seeking to address problems of growing demand, increasing expense, and higher user expectations. For many of them fostering care at home and private care arrangements are attractive options. The long-term care sector in England is typical of these systems. Over the last 2 decades, government policy in England has placed stronger emphasis on people’s choice and control when receiving care services. People with care and support needs may be eligible for public funds to employ care workers or to use them in other ways promote their well-being. These financial transactions are a major part of the policy of personalisation in adult social care, as confirmed by the Care Act 2014. Drawing on findings from life story interviews with 31 migrant care workers who had worked for disabled or older people in England, conducted 2011–2013, we note the potential for expanding the sociologically inspired concept ‘personalised risk’. This necessitates an appreciation of risks potentially faced by the multiple parties in the care relationship and a differentiated set of structural risks. Applying a multilevel analysis we highlight the potential risks of ‘informality’ of employment conditions experienced by directly employed care workers, the ‘emotional’ content of care worker-employer relationships, and ‘intimacy’ of employer/employee roles. In this article, we offer an empirical based contribution to the wider discussion of risks and risk theory derived from policy changes being adopted by many developed countries that increasingly emphasise individual responsibility for personal welfare within an uncertain and mobile social world.
Preventive medications such as statins are recommended to an increasingly large number of people. To those who make these recommendations, prevention is synonymous with risk reduction; the clinical task of helping people decide about preventive medication is therefore widely framed as one of risk communication. In this article, I explore the role of risk and uncertainty in accounts of medication decisions, drawing on qualitative data from interviews carried out between 2011 and 2013 in the east of England with people who had been offered statins. I found that very few participants mentioned risk or likelihood, or described weighing benefits against harms, the process central to the risk communication project. Instead, those who had decided to take statins described their certainty that statins were needed to treat current problems. This certainty was informed by knowledge about the present or the past; information about possible future harms was presented solely as contributing to concern about current problems. In contrast, those who had decided not to take statins explained their decisions in terms of the inherent uncertainty of information about the future, presenting this uncertainty as a reason to decline medication. This asymmetry between explanations for accepting and for declining statins is rooted in differences between the ways past, present and future information are handled. These findings challenge the assumption that decisions about statins are construed as decisions about risk by those offered them, and raise questions about the usefulness of using risk and uncertainty as key concepts for theoretical accounts of what is going on when people consider taking preventive medication.
In this article, I examine how young unemployed people deal with the risk of unemployment in the Danish welfare state, focusing on two main issues. I examine the technologies currently being used in the unemployment system to manage youth unemployment and I explore how the young unemployed people who are the subject of these technologies understand and react to them. I also consider the affective work, which underpins these technologies and the ways this shapes the framing of risks. In this article, I draw on a Danish research study (2014–2015) that examined the ways in which the Danish unemployment fund operated and I used in-depth interviews to explore the ways in which 33 young unemployed Danes interacted with the unemployment fund. Using the conceptual tools provided by the governmentality risk perspective, I analysed the relationship between institutionalised risk management and individual risk management. I found that the management of risk at the institutional level invoked the use of a screening tool that categorised young unemployed people into risk groups and this categorisation determined the intervention the young unemployed persons received. I found that in the new unemployment system, young unemployed people were treated not only as homo economicus, that is, rational actors responding to economic incentives but they were also seen as sensitive beings whose feelings and affects could be shaped by technologies empowering and motivating them in order to enable them to manage their own risk of unemployment more effectively. This psychologised the issue of unemployment.
Dossier on Africa, Human Rights, and Humanitarianism (in lieu of an abstract, overview of the issue)
Amal Hassan Fadlalla, Omolade Adunbi
Ongoing political conflicts in Africa, such as those in the Congo and the two Sudans, together with other transformations initiated by the Arab Spring in 2011, continue to generate debate about human rights and humanitarian interventions in the continent. Building on Mutua’s critique, the authors in this dossier move beyond the savior/savage narrative to re-interrogate the meaning of rights and national and transnational solidarities in the post–Cold War era. The five essays here examine the tensions between master narratives and counternarratives, the mobilization of new celebrities and humanitarian activists, the ‘‘intimate politics’’ of rights in low-income urban households, the re-Orientalization of Islam and Muslim cultures, and the continuous denial of pastoralists’ land rights.
Amal Hassan Fadlalla
Lisa Ann Richey, Alexandra Cosima Budabin
Nadine Naber, Atef Said
Marianne Melander, Kjerstin Dahlblom, Bhoomikumar Jegannathan, and Gunnar Kullgren
Background: Traumatic events experienced by parents who have survived genocide influence mental health among their offspring. This study aims at exploring how the communication of traumatic events between Khmer Rouge survivors and their offspring was perceived by both generations.
Methods: Qualitative interviews were performed with six Khmer Rouge survivors and with six young people representing the second generation and were analysed using a content analysis approach.
Discussion: Parents felt that informing their children was important to instill gratitude for living a better life and to empower them. Among children, this was met with empathy but sometimes also disbelief and at times they blamed their parents for being too submissive.
Conclusion: The study discloses the complexity, pros and cons of intergenerational sharing of trauma.
Emily Yates-Doerr* & Megan A. Carney
Attention to culinary care can enrich the framing of health within medical anthropology. We focus on care practices in six Latin American kitchens to illuminate forms of health not located within a singular human subject. In these kitchens, women cared not for individuals but for meals, targeting the health of families and landscapes. Many medical anthropologists have critiqued health for its associations with biomedicine/biocapitalism, some even taking a stance ‘against health.’ Although sympathetic to this critique, our focus on women’s practices of caring for health through food highlights dissonances between clinical and nonclinical forms of health. We call for the development of an expanded vocabulary of health that recognizes health care treatment strategies that do not target solely the human body but also social, political, and environmental afflictions.
This essay discusses the Indian government’s implementation of maternal death reviews (MDR) across the country in response to a global WHO strategy called ‘Beyond the Numbers.’ India’s MDR process attempts to better count and assess maternal deaths across the country, yet considerable challenges remain. Existing studies of the MDR process in India still reveal systemic failures including poor quality of obstetric care, as well as omissions or delays of care that are covered up or denied. An ethnographic case study suggests ways that ethnographic sensibilities or techniques could be used to harness community stakeholders or lay perspectives by privileging ambiguity, multiplicity, and conflicting views in order to reveal these systemic omissions or failures of accountability. It concludes by suggesting how ethnographic ways of knowing might elicit lay concerns or critiques that threaten the very medical privileges that the MDR process inadvertently shores up.
Kevin Louis Bardosh
Efforts to control neglected tropical diseases have increasingly focused on questions of implementation. But how should we conceptualize the implementation process? Drawing on ethnographic fieldwork between 2010 and 2012, in this article I explore efforts by a small-scale public–private partnership to use private veterinarians to sustainably control zoonotic sleeping sickness in Uganda. With a fundamental tension between business incentives and vector control, I show how divergences in knowledge, power, values, and social norms shaped project implementation and community responses. Reflecting more widely on the relationships between project plans and local realities, I argue that these encounters reveal the heuristic value in approaching global health interventions as evolving ‘social experiments.’ This metaphor reveals the uncertainty inherent to dominant narratives and models, the role of available expertise in defining the limits of action, and the need for continuous adaption to synchronize with emergent social and institutional topographies.
Mónica Berger-González, Ana Vides-Porras, Sarah Strauss, Michael Heinrich, Simeón Taquirá & Pius Krütli
Biomedicine fosters particular styles of interaction and behaviors, with the therapeutic relationship seen as occurring between a doctor and patient. In contrast, where alternative modalities of healing are practiced, relationships go beyond a dyadic interaction and include wider social networks. In this article, we propose the existence of a ‘therapeutic unit’ in Maya healing practices in Guatemala that binds healer, wellness seeker, family, and community members, along with the spiritual and natural realms, into a coherent system requiring all of these elements to achieve success. Drawing on interviews with 67 Maya healers, we describe healers’ understanding of raxnaq’il nuk’aslemal (well-being), and show how these interactions activate wider networks that play crucial roles during treatments. We highlight how holism is expressed in relationships typical of indigenous healing systems, and how an appreciation of this is important for developing culturally appropriate health care provision systems.
Philosophy, Ethics, and Humanities in Medicine (open access)
Sohair R. Fahmy and Khadiga Gaafar
Background: Although animal research ethics committees (AREC) are well established in Western countries, this field is weakly developed and its concept is poorly understood in the Middle East and North Africa region.
Objective: Our main objective was to introduce the concept and requirements of ethical approaches in dealing with experimental animal in research and teaching in Egypt.
Methods: Due to its very recent inception, Cairo University, Faculty of Science IACUC decided to operate in accordance with Guide for the Care and Use of Laboratory Animals 8th Edition 2011 (the Guide) since Egypt has not yet compiled its own guide.
Results: Fifty protocols were reviewed in 2013–2014. Only ten protocols were reviewed in 2013, but in 2014, forty protocols were reviewed. In 2013 all protocols were approved and in 2014, number of approvals were 35, the number of deferrals were 4, and one refused protocol. Master’s theses (MSc) research protocols constituted the majority of the total reviewed protocols. This is attributed to the decision of the Board of the Faculty of Science, Cairo University in September, 2013 that the approval of the IACUC is mandatory before conducting any research involving animals or theses registration.
Conclusion: The first IACUC was established in the Cairo University, Faculty of Science, since 2012. The challenges encountered by the committee were diverse, such as the absence of laws that control the use of animal models in scientific research, lack of guidelines (protocols for experimental animals in research) and, mandatory ethical approval for any experimental animal research.
Susan Reynolds Whyte, editor
Contributions by Godfrey Etyang, Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne Mogensen, Jenipher Twebaze, Michael A. Whyte
Duke University Press, 2014, 328 pages
What would happen if an entire generation of people who were expected to die experienced a ‘medical resurrection’?What would that generation do with their second chances? What would life look like for them? Susan Reynolds Whyte and her team explore these and other questions in Second Chances: Surviving AIDS in Uganda.
The medical miracle under investigation is anti-retroviral therapy (ART). When first introduced to Uganda, antiretroviral medication (ARVs) literally brought people back from the brink of death. An entire generation of Ugandans who had been expected to die of AIDS was suddenly given a second chance at life.
As Whyte and her team argue, survival created a ‘biogeneration’: a generation marked by the presence of both a medical diagnosis (HIV) and treatment (ARVs). The ‘return to life’ gives this first cohort the shared experience necessary to be a generation unto themselves. Unlike chronic illnesses like diabetes, which also require daily medication, ART in Uganda entails close treatment surveillance, clientship within particular clinical networks, and an identity assumed from the social networks informed by diagnosis, access, and adherence to ARVs. As the authors specify toward the end of the book:
‘The new social relations of the first generation were first and foremost to their health care providers and to the treatment programs they joined. Those relationships were the basis for possible membership in support groups and HIV welfare organizations. They were, in any case, the condition for continuing life in their families’ (277f).
That is, what is new in the biosociality of this first generation to survive HIV is ongoing clientship as a form of treatment, with all the repercussions that clientship has within family and professional relationships. These repercussions included some clients taking on new roles as community educators and treatment group facilitators. For almost all in that first generation, visibility – among relatives and within the community – became a key component of ‘coming back to life’.
Because this is a book about second chances, it’s important to note what the book is not: Second Chances does not focus on global political economy, structural violence, or the ethnography of clinic workers or the interaction of clinic administration with Ministries of Health or the Uganda AIDS Commission. Likewise, reflecting the mostly heterosexual transmission pattern of HIV for most of Africa, the way Ugandan politics intersects with HIV and the MSM (men who have sex with men) community is not discussed.
The ethnographies which form the backbone of Second Chances emerged from two rounds of fieldwork. From a group of 48 people referred by clinics to the researchers for interviews in the first round of fieldwork in 2005 – 2006, 24 were selected from seven treatment sites throughout the country to participate in eight follow up interviews during the second round of fieldwork in 2006 and 2007.
While the authors note the sample is not fully representative of the ‘average’ Ugandan living with HIV, the authors nevertheless included urban and rural, male and female, free and paying clients in the study. The age range of participants was slightly older (between 30 and 50 years of age) and slightly better educated than the average Ugandan. The follow up visits were conducted at homes and work, which decentered AIDS from the discussion and allowed a broader insight into the daily lives of participants: visits were spent chatting over family and other matters, in a fairly successful effort ‘to see how treatment fits in with other concerns’ (p xi).
Showing the flexibility of the concept ‘generation’, which the authors root in Mannheim’s 1923 concept of a group consciously sharing a particular, psychologically formative location within historical events, the authors themselves point out that three ‘academic generations’ of anthropologists contributed to Second Chances: Susan Reynolds Whyte and her husband Michael Whyte comprised the first generation; their two Danish students form the second; and four Ugandan anthropologists comprise the third (10, ix).
The Ugandan researchers conducted both the initial interviews and the follow-up visits. Local anthropologists therefore were able to use a self-reflexive, rather than an imperialist, gaze. Among other issues, the mix of local and foreign anthropologists served to eliminate intimations that AIDS is an ‘African problem’, resulting from a somehow ‘deviant’ ‘African sexuality’ at odds with a standard ‘Western sexuality’.
The authors call Second Chances a ‘polygraph’, in contrast to monographs by one author or edited volumes of one author per chapter. In this polygraph, multiple authors work from the same data, teasing out themes and co-authoring chapters together. With eight pairs of eyes, multiple perspectives on a common story emerge.
The end result is a clearly organised book of twelve chapters (including the introduction) which can be loosely grouped into three sets of related themes: accessing ART; family life; and normalizing ‘the resurrected body’. Each chapter is prefaced by a case study, followed by separately marked thematic analyses which draw in the lives of other participants. While a polygraphy does mean that no single theoretical approach dominates the narrative, the reader can use the opening case studies to think through her or his own favoured theoretical model.
The introduction provides background to the field site: Doctors in Uganda were the first to report AIDS cases in Africa (where it was called ‘slim’) in 1982. HIV treatment in Uganda remains dependent on foreign funding, with a resulting diversity of treatment programs. When ARVs arrived in the early 2000s, the research team had a unique opportunity to record the formation of a ‘biogeneration’.
But who gets this ‘second chance’? A particular policy implication highlighted in the first chapter, ‘Connections’, is that not everyone has equally effective, large, or varied social connections — and thus not everyone has equal chances for finding affordable, accessible care in a timely manner. That includes testing for HIV, introductions to treatment sites, and negotiating bureaucracies within treatment programs.
Second chances can also depend on who you get to know. The linguistic shift from ‘patients’ to ‘clients’ discussed in the second chapter underlines how the ‘lopsided friendship’ of a client-patron relation keeps treatment flowing smoothly, even when paperwork is the official seal of ‘belonging’ to a clinic.
Getting to treatment another focus of life on ART, and the third chapter. Because families and workplaces in Uganda often bridge urban and rural locales, while treatment facilities, which can close from lack of funds or relocate, are almost exclusively in cities, clients sought ‘a tactical congruence among livelihood opportunities or requirements, family support, and treatment connection’ (81).
The authors address the classical anthropological theme of kinship through chapters devoted to the family, partners, and children. In the 1980s and 1990s, AIDS reconfigured families and familial alliances; the authors consequently argue that ‘families can be understood as a changing network of possible relationships rather than as units of undifferentiated solidarity. Second chances are heavily dependent on these contingencies of relationship for better or for worse.’
The authors note that ‘generally, the extra challenges of HIV and ART exacerbated existing tensions and strengthened ties that were already sound.’ (107) One element in this dynamic which stood out was how food resources, often tied to clientship in an ART program, condition family ties through treatment program policies towards food sharing among clients’ families.
Meanwhile, ‘testing and ART served to problematize sexuality, to cast sexual relations in another light and make them objects of concern,’ which the authors discuss in ‘Partners’ (chapter five). In cases of partners having different HIV status, ‘Condoms took on meanings of care, responsibility, virtue, and enlightened modernity.’ (138)
The chapter on children is especially noteworthy. As the authors observe in chapter seven, ‘so much of the discourse about HIV is about relationships with sexual partners, yet in many ways relationships with children are the most intense and problematic. Children are about the future that is restored to those who did not die as they expected,’ the living symbol of a second chance (164).
The final set (Bodies, Food, Medicine, Life) treats the theme of returning to life: the impact treatment has on work-life, perceptions of the body, and reintegration into normal social expectations about ‘making a living’.
ART creates challenges in managing work schedules around eating and medication-taking, quite apart from potential workplace stigma regarding HIV. Food itself presents its own realm of adaptation to ARVs, since some medication must be taken with food, and weight lost before ARVs must be regained through changed nutrition. Intimately tied to the theme of public presentation for work is the anthropological theme of the body. The body’s appearance, its role in acquiring, advertising, or hiding one’s HIV status are all relevant to how ART has presented second chances to live in Ugandan society. Each of these themes is amply treated in its own chapter.
The final chapters return to the questions posed at the outset: How is ART medicine viewed differently from other common medications like anti-malarials and insulin? What happens once treatment is accessed and becomes regularly available? Once people ‘return to life’, how do they meet the challenges of finding wives, untangling social relations, negotiating community ties? In a sense, the final chapter opens onto the experience of the second biogeneration, a generation not expected to die of HIV/ AIDS, but to remain in the community while integrating the particularities that come with ARV clientship.
Over all, Second Chances is an excellent source of health narratives about negotiating HIV status in Uganda, Second Chances will naturally interest anthropologists of East Africa, HIV and biosociality. Chapters on embodiment, via the physical changes accompanying both treated and untreated HIV, are well described.
NGO policy makers can also read the material with an eye to potential intervention points, including how work and family inform clients’ adherence. The chapters also underline potential sources of client disillusionment, and how competition between programs plays out in client and family decision-making about where to test and continue treatment.
The work does have a few drawbacks, none of which undermines the fundamental argument. The polygraphic nature of Second Chances means no one writing style predominates. Combined with the multiplicity of interlocutors, this constant shift in style makes for an occasionally taxing read. While the authors do a decent job of including epithets (‘Saddam the Soldier’) for the ‘cast of characters’ in the body of the work, the initial onslaught of participant names was a bit overwhelming.
Despite tantalising allusions to the role of religion in many participants’ lives, the authors do not devote a chapter specifically to religious beliefs, HIV, and ARV. Religious experience and illness is therefore a theme which warrants further attention from other anthropologists, especially given the frequent references to ARVs as a miracle or gift from God, and the overall theme of resurrection.
Finally, some readers might argue that this work is dated already and no longer relevant. The 90-90-90 UNAIDS approach is being rolled out; CD4 levels no longer determine when treatment is initiated; and the global recession underlines the fragility of donor-based treatment programs.
Such characterisation, however, would miss the point: this book is about what it is like for the first generation to live with ART embedded into daily life. As the authors explain,
‘Sociality requires us to look at the everyday forms of interaction that are often beyond the purview of health-policy makers, even though they are essential strands of the web in which health rests. … Taking this broad approach means using ART as an optic for seeing lives and the context in which they are lived, just as it means using lives and context for understanding ART.’ (2)
In other words, by examining how people go from being at death’s door to becoming community leaders, relationship brokers, and network facilitators, Second Chances looks at the relationship between power and illness, social networks and recovery, and the reliance of all four on the simple but uncertain fact of living.
A worthwhile look at the first generation to survive HIV in Uganda, Second Chances captures a richly textured image of a generation which was the first to be marked by both medical diagnoses and medication adherence – and the varieties of making a living with a second chance at life.
Jason Johnson Peretz holds an M.Phil in Medical Anthropology from Linacre College, University of Oxford, and an MAOM from the New England School of Acupuncture. He currently works in the Division of Global Health, HIV and Infectious Disease at the University of California, San Francisco (UCSF), and volunteers as a sexual health and HIV test counsellor. Jason consults on projects at the intersection of global public health policy and human rights. He can be reached on Twitter @JasonOxon.
University of Chicago Press, 2013, 320 pages
In Sex Itself: The Search for Male and Female in the Human Genome (2013), Sarah Richardson takes gender criticism to a new level — the genomic one. Following the work of noted scholars such as Evelyn Fox Keller (1995), Anne Fausto-Sterling (2000) and Emily Martin (1991), Richardson’s text explores the interplay between biological notions of sex and cultural conceptions of gender. With close historical attention, Sex Itself takes as its analytic object the sometimes bewildering practices making up the “search” for sex, from the discovery of distinct X and Y chromosomes to the attempt to enumerate the genetic differences between males and females. Richardson compellingly argues that gender is central to our understandings of chromosomal sex, and advocates for the acknowledgement of the interplay between sex and gender so that we may recognize how gender acts not only as a source of bias, but as a productive force driving genetic research.
Richardson troubles the etiological explanation of sex often assumed in both scientific and popular discourse; where genetic factors are taken as necessarily prior to other biological components and socio-cultural notions of gender are overlaid upon individual bodies and biologies (Chapter 1). Instead, she draws out themes of dynamism and exchange, noting how scientists have historically overlooked inherent ambiguities in the relationships between X and Y chromosomes in favor of promoting findings which support gendered ideas about biological sex differences. Though Richardson’s critical analysis centers on the ways in which socially contingent meanings of ‘male’ and ‘female’ have fundamentally shaped scientific practice, she does not shy away from technical and historical detail. Fortunately, her impressively clear writing, and the clever illustrations judiciously sprinkled throughout the text, help her less scientifically inclined readers quickly develop requisite familiarity with core biological and genetic concepts.
The text comprises ten chapters that trace the historical development of scientific understandings of sex, with the first and last chapters providing a conceptual overview and potential implications of her argument, respectively. Chapters 2 and 3 describe both the first discovery of X and Y chromosomes in 1890 and their condensation into the “sex hormones.” Tracking the engagement of a handful of key experimental biologists, primarily in the United States, Richardson shows how theories of sex determination changed over the first part of the 20th century. She argues that powerful social concepts of gender influenced the framing of scientific research on every level — from linguistic choices in publications to the objects taken as deserving of scientific inquiry. Her approach complicates scientific rhetoric of linear progress where older, untrue, findings are replaced by newer ones due to technological progress. Instead, Richardson is concerned — and rightly so — with the myriad ways in which prior concepts inform scientific advances even when older findings become discredited.
As Richardson writes, the goal of the text is to explore the role of gender in the practices, claims, and theories of genetic science (Chapter 1). One way she does this is by a close assessment of the conflicts undergirding scientific progress, reflecting in part Bruno Latour’s call in Science in Action (1987) to follow the controversy. In the case of the discovery of X and Y chromosomes, this includes demonstrating the key role of the research of Nettie Maria Stevens, a female biologist whose contributions are often overlooked. This is an important acknowledgment of the many levels that gender inequality works in the sciences; even the story of scientific progress is unable to escape the influence of dominant gender ideology (the overarching social understanding of male and female in the US (12)) which subsumes the roles (and biologies) of women to men. Though initially controversial, ultimately sex chromosomes become the terminology of choice, despite Stevens’ preference for the more general “heterochromosomes” (43). This linguistic shift solidified a binary relationship between male and female biologies as well as concretized the ontological foundations of gender difference (Chapter 3, “How the X and Y Became the Sex Hormones”). The enduring significance of terminology resurfaces in Richardson’s final arguments, where she maintains that acts of naming on the genomic scale reflect and contribute to social ideas of gender as well as delineate the spaces of appropriate research (206-207).
Chapters 5 and 6 emphasize the myriad ways in which the X and Y chromosomes become “sexed.” Tracking the influence of culture, in particular gender ideology, the mosaicism of the double x became symbolically reflective of feminine “instability,” “mystery”, or “complexity” (110). Genetically speaking, mosaicism refers to the fact that female cells contain a mixture, or “mosaic” of X-chromosomes from both parents. In some cells, the paternally inherited X-chromosome is expressed, while in others, the maternally inherited X is expressed. On the other hand, males can only express the sole maternal X-chromosome they have. Additionally, research on criminality and the hypothesized XYY “supermale”, though short lived and rife with methodological and interpretive flaws (87), contributed heavily to the interpretation of the Y as the source of masculine aggression (Chapter 5, “A Chromosome for Maleness”). Richardson compellingly shows how the 1960’s and 1970’s view of sex and gender differences sustained the super-male hypothesis despite the strong evidence against interpreting an additional Y chromosome as indicating a higher likelihood of exhibiting violence, or aggression. While intersex advocates and sex researchers have changed some aspects of genomic sex research, Richardson argues that interpreting X and Y chromosomes as the essence of sex categories persists in research to this day.
What makes Richardson’s argument so compelling is, in part, her ability to avoid striking too hard a dichotomy between biological and cultural determinations of sex. By taking the development of scientific knowledge seriously, she is able to show the ways in which complexity and nuance becomes flattened in the race to create biologically causal models explaining some of our most human categories, without negating the existence of biological entities or foreclosing the relationship some of those entities may have to cultural forms. As Richardson rightly points out, feminist critiques of science have a long history of pointing out the existence of bias in science, in particularly showing how finding the socially expected (sex differences rather than sex similarities, aggression in the x, passivity in the y) has neglected other kinds of biological evidence, sometimes with disastrous consequences. Sex Itself, however, reaches beyond assessment of bias to argue for a more textured reading of the possibilities of integrating critical attention to gender into biological research on sex.
“Modeling gender in science,” as Richardson calls her approach, includes not only “gender criticality” or the practice of unveiling how gender operates in scientific pursuits, but also “gender valence” (Chapter 1, “Sex Itself”). She coins the concept of gender valence in order to distinguish her argument from feminist critiques which have primarily emphasized the production of bias, and to provide a way forward for scientists working on biological sex differences. To be gender valent, research must openly discuss and describe gender conceptions and often gender politics (17). To embrace a partiality of perspective, drawing on Donna Haraway’s notion of situated knowledge (1988), is not to limit the capacity of making scientific arguments but rather to articulate already existing constraints, assumptions, and biases. For Richardson, “visibility” and “flexibility” characterize gender valence (17), identifying the importance of both individual practices for those engaged in experimentation, publication, and research as well as social practices which normalize treating gender and sex as salient research categories. In particular, Richardson shows how often scholars who directly engage with gender politics are thought to be too explicitly feminist to also be sufficiently objective (Chapter 8, “Save the Males!”). However, Richardson notes that contrary to popular opinion, choosing not to discuss the impact of gender does not itself protect research from the impact of gender ideology. Rather, only transparency and explicit discussion can create more responsive and ethical research, as well as identify and remove bias.
What really matters in genomic sex research, Richardson tells us, is not denying differences in genes or the relationship between cultural concepts of gender and biological categories of sex, but rather critically and reflexively including the categories in genomic research. Her largest theoretical contribution is the reformulation of sex as a “dynamic dyadic kind,” in Chapter 9 (197-198). Treating sex as a new “kind,” or a new category altogether distinct from other individual biological characteristics foregrounds the incommensurability of sex and species as well as the mutually constituted nature of male and female in humans. Richardson is careful to write that she refers only to gametic sex, arguing that viewing sex as a “dynamic dyadic kind” is different from viewing sex as a strict binary, or two separate genomes, as it emphasizes a genetic perspective which takes both sexes as essential to the unit. I understand Richardson as attempting to hold fast to the biological necessity of researching sex differences while also considerate of the many interlocking factors, the “dynamicism” that makes up sex. However, despite her consideration of intersex conditions and anomalous chromosomal makeup in much of the rest of the text, it seems that the notion of a “dynamic dyadic kind” still shies away from fully incorporating a consideration of individuals whose biologies diverge from the expected genetic makeup. The potential for incorporating intersex conditions into the theoretical framework remains in potential, or perhaps assumed, rather than fully described.
While Sex Itself may not seem to present a fundamental overhaul of genomic sex research on its first read, Richardson’s detailed analysis of the interplay between gender and sex in the age of genomic research provides numerous suggestions both large and small for those engaged in biological sex research and those who study the interplay between gender, sex, and science. Many of these suggestions, if taken seriously, will lead to tectonic shifts in the ways that research on sex and gender is done. The risk of reverting to an overly rigid binary view of sex as well as the potential of genetic research to codify differences in sex is acknowledged (216), with the hopes that confronting not only biases but constructive influences from the outset will lead to better scientific practices and more robust genetic knowledge. Overall, this is an excellent addition to the feminist science studies literature, which should enjoy a wide readership across disciplines.
Paula Martin is a graduate student in the Department of Comparative Human Development at the University of Chicago. Her research focuses on the experiences of puberty and puberty suppression for transgender and gender nonconforming youth.
Fausto-Sterling, Anne. Sexing the body: Gender politics and the construction of sexuality. Basic Books, 2000.
Haraway, Donna. “Situated knowledges: The science question in feminism and the privilege of partial perspective.” Feminist studies 14, no. 3 (1988): 575-599.
Keller, Evelyn Fox. Reflections on gender and science. Yale University Press, 1995.
Latour, Bruno. Science in action: How to follow scientists and engineers through society. Harvard University Press, 1987.
Martin, Emily. “The egg and the sperm: How science has constructed a romance based on stereotypical male-female roles.” Signs 16, no. 3 (1991): 485-501.
Richardson, Sarah S. Sex itself: The search for male and female in the human genome. University of Chicago Press, 2013.
Paula Martin is a graduate student in the Department of Comparative Human Development at the University of Chicago. Her research focuses on the experiences of puberty and puberty suppression for transgender and gender nonconforming youth.
University of California Press, 2015, 256 pages
Pain has a famously intangible quality. To paraphrase Elaine Scarry, for the person in pain, “having pain” can be wholly consuming and experienced as concrete reality. But for all its “there-ness,” pain is difficult to pin down, measure and describe. This can be an isolating and lonely experience, made worse by the pervasive stigma that plagues those who have invisible disorders. All of which produces challenges for doctors asked to provide explanations for pain. Patients desperately need these explanations—they provide some order to what otherwise might be inchoate or disparate symptoms. Explanations suggest cause, dictate treatment, and attempt to prognosticate the future. And they are also infused with meaning, imbuing patients with judgments about their moral character. How responsible are patients for their symptoms? How deserving are they of their treatment?
The social production and cultural meaning of explanation takes center stage in Buchbinder’s beautifully written and provocative ethnography of an adolescent pain center. Buchbinder starts with premise that pain is not a wholly individual experience, but one produced in social contexts. Likewise, she argues, explanations for pain are never transparent descriptions of the body, but social creations—performances that provide legitimation for patients and practitioners, or rhetorical devices that serve to produce trust in doctor-patient interactions.
Buchbinder’s ethnography follows a variety of adolescent patients who are experiencing devastating, disabling pain as they receive treatment at “West Clinic,” an adolescent pain clinic. These patients live at home with their parents, and most have dropped out of school. West Clinic is described as their last, best hope to find relief. West Clinic, Buchbinder explains, has some distinctive features: it exists in a diverse location, but its diffuse structure, cash-only policies, and time-consuming treatment regimens effectively exclude all but the most privileged patients. The clinic also uses explanatory models that diverge from those in use elsewhere in pediatric pain medicine, which is important to keep in mind when considering potential generalizability. But the strength of Buchbinder’s book isn’t in the particulars of the specific explanations that she observes—it’s in her overarching reinterpretation of how we understand the deployment and uptake of explanations in clinical medicine.
Take, for example, the case of Michael Harris, who developed severe gastrointestinal pain and depression after an emotionally difficult year of school. Unlike many pain patients, Michael and his family entered West Clinic already thinking of his symptoms as psychological. However, the clinic’s primary physician, Dr. Novak worked diligently to change their explanation for the pain to a neurobiological paradigm. After diagnosing Michael with irritable bowel syndrome (IBS), which she described as “real,” she explained that this often happened with “really smart kids” whose brains and nervous systems make “faster connections.” But, she explained, this “neural glitch” could work in Michael’s favor, as the fact that he was a good, intelligent student would make it easier for him to reteach his body how to work.
Buchbinder describes Novak’s technique as part of a “personhood diagnostics” employed by West Clinic, in which a neurobiological framework is extended to include moral characteristics such as creativity, intelligence, and sensitivity. She explains that this approach serves to engage patients in a variety of obligations, including attending school, coping with pain, and adhering to an onerous treatment protocol, but it mostly manages to do so in a way that doesn’t automatically devolve into a mind/body dualism that blames patients for their symptoms.
Explanations shift, however, when clinicians talk amongst themselves (although sometimes these thoughts were shared with patients). Certain patients, especially those not progressing well in the program, get labeled as having features of “pervasive development disorder” (PDD)—a diagnosis no longer included in the Diagnostic and Statistical Manual—including concrete thinking, an interest in details and hyper-attentiveness. These patients were spoken about as having “sticky neurons” that resisted West Clinic’s treatments. Although his family was never told, Michael was described as “PDD-ish.”
Clinicians seemed to label patients (and even family members) of PDD quite liberally and, though Buchbinder didn’t say it as explicitly as I would have liked, often problematically. As an ethnographer who studies migraine, I was often deeply troubled by clinicians’ suggestive use of PDD. I am still angry about a young woman with migraine who was labeled with PDD simply because she requested for the lights to be turned down in an examination room. Light sensitivity is a signature symptom of migraine! The clinic should have its lights turned down in anticipation of these symptoms.
At other times and in other contexts, clinicians drew on psychodynamic arguments, laying blame on family dynamics, and pointing their finger towards poor parenting, which could take the form of everything from inadequate care to too much care or “enmeshment.” In interviews, health care providers would provide more sociological explanations, arguing that adolescents’ bodies were simply screaming out in resistance to the stress of overscheduled modern-day lives and expectations.
The explanations, themselves, are old bogeymen, some dating back centuries. Physicians have long attributed pain to sensitive nervous systems, intelligence, modern societies, and dysfunctional families. What Buchbinder does well is demonstrate how these explanations coexist, overlap, sometimes contradict each other but often work together, a feat she accomplishes by observing all the workings of the clinic, from doctor-patient interactions to backroom “team” meetings to patients’ lives at home. Some of the explanations work well and are taken up easily by patients. Some don’t. But their multiplicity casts a long shadow on studies that only capture actors’ explanations using one data point (for example, interviews). Explanations are used performatively and what is said in one setting may not be the same as what is said in another.
Buchbinder’s fascinating discussion of clinicians’ “neurofication” of subjectivity will interest a wide set of readers. Embedding personal and moral characteristics like intelligence, hard-work, and sensitivity in the brain can go a long way towards legitimating the symptoms of a person in pain. However, embedding moral characteristics in the brain can also reify these tendencies in problematic ways.
“All in Your Head” is an excellent addition to scholarship on health and illness and, particularly, on pain. It’s a must-read intervention in the anthropology and sociology of diagnosis. This is also the kind of careful and provocative text that I love to assign in classes. Buchbinder’s ethnography not only contributes substantially to our understanding of the social uses of explanations, it also exposes how the cultural meaning of these explanations depends on the language that is used and the social and cultural context in which it is delivered.
Joanna Kempner is an associate professor in the Department of Sociology at Rutgers University. She works at the intersections of medicine, science, politics, gender and the body. Her award-winning book, Not Tonight: Migraine and the Politics of Gender and Health, examines the gendered social values embedded in the way we talk about, understand, and make policies for people in pain.
Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press, 1985.
It was one of those typical late spring afternoons in Beijing, when the desert sand blowing from the North begins to give way to an electric atmosphere more pregnant with thunder than rain. Seated on a covered leather-armchair, I tried to concentrate my attention away from the rasp of the polyethene sheet under me and repeat the question: So what was it, in the end, that put a stop to the spread of SARS five years ago? The epidemiologist seated opposite me held one of those lucrative double posts one often comes across in China as in the US; professor at a medical faculty and officer in a key disease control apparatus of the republic. We do not really know, he replied, why it went or where it’s gone. But what will you do if SARS returns one day? I retorted. In a tone perched between a lament and a scoff, the epidemiologist replied: Exactly what we did last time.
This short ethnographic vignette encapsulates what in epidemiological literature has come to be spoken of again and again as “the lesson of SARS”. Following the end of the 2003 coronavirus epidemic, the WHO, the US CDC and the newly founded China CDC hailed the success of the measures against the outbreak. Yet, at the same time, they tacitly acknowledged that whilst there was evidence to support that the former halted the pathogen’s rapid spread across the globe, no demonstrable relation could be established between this and the sudden disappearance of the pathogen amongst human populations.
In other words, whereas anti-SARS measures, consisting largely in the deployment of quarantine and isolation (technologies developed in and little changed since early modernity), were seen as effective in protecting specific locations from the disease, the end of the pandemic in itself could not be shown to be related to these, but appeared instead to be “spontaneous” or at least generated by unseen factors, independent of human intervention.
This narrative makes SARS the latest example of an epidemiological, epistemological and at the same biopolitical pattern that can be best described as the problem of untimely ends. The phenomenon, I would like to argue, refers to such instances when an ongoing, devastating, and to all appearances unstoppable epidemic suddenly comes to an end. More, however, than simply pointing at the unanticipated secession of an epidemic, the notion relates to the principal effects of the suddenness of this end: the disallowance both of a clear cause-effect attribution of epidemic secession, and of an epistemological closure regarding the disease’s status as an existential risk for humanity.
We thus need to place the empirical problem of an untimely epidemic termination (and, more generally, of epidemic termination as such, in terms of what defines or ascertains the end of an outbreak) within the wider context of an altogether different kind of “end”. For in the imagination of the “next pandemic”, the end of outbreaks like SARS comprises the (always already dramatised) closing scene of a really-existing epidemic. Yet, at the same time, it is an event that defers the coming of the final end – the end of humanity both as a biological species and as an ontological condition, i.e. (following Walter Benjamin) as a project of human mastery over human relations with the non-human.
As has been discussed by Elana Gomel and more recently by Carlo Caduff, in the discursive and performative context of biosecurity, the “next pandemic” is not an apocalyptic or eschatological event. For whereas the apocalypse (in its many religious or secular forms) entails a temporality punctuated by the mutual, anti-dialectical immanence of an absolute end and an absolute (that is to say, counter-temporal) beginning, the “next pandemic” is instead underscored by what Gomel (2000: 409-10) has described as “an accumulation of repetitive episodes, deferring any kind of meaningful closure”.
If humanity’s apocalyptic being-in-the-world is always already a being for an eschaton, by contrast, human existence in expectation of the “next pandemic” unfolds in accordance to “a cyclical plot” (Gomel 2000: 413) of meaningless endlessness, which strips human annihilation of any redemptive quality, whilst abandoning being-human to the realm of a monotonous repetition of extinction deferrals.
What I want to propose here is an examination of the relation between epidemic ends and the pandemic End in terms of what I would like to coin as the “pandemic imaginary”. This does not refer to an imaginary pandemic, to the impact of really existing epidemics on civic or political imagination, or to historical ideas about pathogenic traits of the imagination. Nor however should the proposed notion of the pandemic imaginary be read within the enduring analytical indistinction between the imagined and the imaginary, or the imaginary and imagination (prevalent to anthropology and STS). Instead, the term here is intended to relate to the imaginary in an anthropological-materialist sense, in dialogue with the work of Cornelius Castoriadis.
The Dialectic Imaginary
In his Imaginary Institution of Society, Castoriadis famously distanced himself from psychoanalytic notions of the imaginary. Castoriadis proposed instead an analytic which saw the imaginary not as a reflective surface but as a productive principle of reality. This rejection of Lacanian metaphysics led to an understanding of the imaginary as something that, while on the one hand needs to “pass through the symbolic in order to be expressed” (Moore 2007: 60), on the other hand is not subsumed into it, but exceeds it, insofar as the symbolic “cannot […] without the capacity to ‘see in a thing what it is not, to see it other than it is’”.
This understanding of the imaginary is central to Castoriadis’ opposition to an ontology of determinacy – which, in simple terms, postulates that “to be is to be determined” (Gaonkar 2002: 6). In this sense, his notion of the imaginary seems to share with Jean Paul Sartre’s take on the imagination the crucial aspect that, as a capacity for seeing and acting on the world “as different from what [is]” (Gammeltoft 2014: 157), it forms not simply a “power of consciousness” but rather is “the whole of consciousness as it realizes its freedom” (Sartre 2001 : 216). However, by crucial difference to Sartre, Castoriadis’s approach conceptualised the imaginary both as what allows for the inter-institution of social and individual autonomy and as what lies at the heart of individual and social heteronomy. Indeed, as what allows the transformation of one form of political being into the other.
What I want to argue here, as a result, is that the pandemic imaginary plays an irrevocably dialectical role. On the one hand it enables us to think or conceptualise a future where human mastery over human/non-human relations has ceased to be humanity’s condition or destiny. It is, in other words, an imaginary that is institutive of post-human futures and, at the same time, of a present awakening insofar as, to use Adorno’s well-known phrase, “the absurd is presented as self-evident in order to strip the self-evident of its power”. Yet at the same time, the pandemic imaginary is also a set of instituted ideas insofar as it forms part of the state and capital sanctioned apparatus of preparedness, studied to great detail by Andrew Lakoff and Frédéric Keck. As such, it has an ideological function: that of disallowing the conceptualization of this post-human future in terms of a radically new potentiality; in other words, in terms of (at one and the same time) an alternate anthropogenesis and a new reality principle.
What renders the next pandemic a “preparable” catastrophe is precisely the fact that it is projected as something which is not (at) all-new. From preparedness exercises to pandemic movies and novels, the social impact of the “next pandemic” is depicted as a meltdown of private property and law-and-order. We can then say that the instituted or organic pandemic imaginary, identifying human suffering with the demise of bourgeois values, paints a dystopian picture where humanity is led “back” to an animalistic state of mutual predation. For this regime there can only be two imaginable futures for humanity: the capitalist present or a return to “the stone age”.
Hence whilst pandemic-borne human extinction forms an imaginary that holds the potential of indeterminacy, allowing us to see the human condition as other than is (a future without human mastery), it, at the same time, generates a vision of no imaginable alternative, the future either as what already is or as nothing. A vision of humanity having finally arrived at its proper plane of existence, which can either be maintained or lost, but in no way overcome – an anthropogenic telos; humanity as Being-in-itself.
What is then the role of “untimely ends” in the imaginary of human extinction?
The Work of the Untimely
It is important to consider that, in what following Priscilla Wald we may call Western outbreak narratives, epidemics operate on two interlinked temporal registers; first, a linear temporality structured around the beginning and end of an outbreak; second, a circular temporality structured around ideas such as dissipation, dormancy, recrudescence, and epidemic waves. Whereas the first temporal register emerged within historical narratives related to specific epidemic events, such as Thucydides’s plague of Athens, the second register has been the historical product of medical narratives, which primarily related epidemics with seasonal phenomena, as exemplified in the Hippocratic corpus.
Adapting these temporal frameworks and entangling them in various, often aporetic ways, over the past century the notion of infection initially unfolded in accordance to a compartmentalisation between, on the one hand, a cyclical temporality of epidemics, as a time proper to the non-human animal realm, and, on the other hand, a linear temporality, which by contrast applies to the impact of a disease in the human realm. In other words, animals and insects were conceived as “natural” reservoirs of infectious diseases; the proper realm of pathogens where they are reproduced through enzootic and epizootic cyclical chains of infection. By contrast, humans were seen as separate from this natural cycle of disease, and infected in a “linear” way. This was a schema that fostered ideas and affects crucial to the disciplinary apparatus of what Ruth Rogaski has called hygienic modernity insofar as it permitted utopian visions of a disease-free humanity qua a humanity separated efficiently enough from “nature”.
Zoonotic diagrams proliferating since the 1940s became emblematic of this schema of infection. Depicting the “reproduction” of disease amongst non-human animals through cyclical feedback loops and human infection in the form of linear arrows (a long-standing convention of pestiliential affliction), they brought together the two temporalities of infection, visualising their pathogenic intersection as a locus of biopolitical actionability (rat-proofing, DDT, extermination, etc). In the context of this temporal metaphysics of infection, the sudden end of an epidemic could be attributed to it having (or having been) returned to its “enzootic” phase of slow, low-mortality reproduction in some remote corner of the natural realm; sufficiently distanced from humanity to avert serious concern.
In recent years, however, the temporal metaphysics of infection have shifted under the gravitational force of a new doxa: emergence. No longer sufficient are the cycles and arrows of pestilence. No more the safe boundaries between animal and human, guarded by cybernetic thresholds of some epizootic transformation of quantity (mass animal kill-off) into quality (human infection). In the flux of infectious disease emergence, a new “entangled” topology of infection arises, best visualised perhaps by the increasingly ubiquitous spidergram: more an astrological chart of infectious influence and conjunction than an aetiological diagram. In this context the spontaneous, sudden end of an outbreak takes new proportions. For in the topology of infection defined by emergence, the secession of an epidemic is no longer seen as a retreat “back to nature”; an ontological return of disease to its proper place, providing a sense of security. Instead, it is something that generates anxiety insofar as it is suspected as part of a process which has nothing to do with the old idea that a disease simply runs its course; that it withers away, losses its power or dissipates. Seen instead as a stratagem, inherent to the being of the disease, this is now seen as a process that allows the latter to return not to “nature”, but instead to a state of being-unseen; in other words, to the imperceptible complexity of the folds and connections between “influences”, “drivers” and “factors” – visualised so aptly, in the case of spidergrams, the form of a cobweb of significance where the weaver, to use the Geertzean idiom, is forever suspended. This retreat of disease into the very “fabric” of infection, disallows human intervention on the basis of an opportune time (kairos). It is in this sense that these epidemic endings are configured and experienced not merely as premature but as untimely, precipitating not only an in situ epidemiological crisis, but, most importantly, a crisis as regards the survival of humanity as such.
“Untimely ends” can then be best approached as transformative topoi between the symbolic order of really existing epidemics and the pandemic imaginary, as a vision of the (biological and ontological) end of humanity. Rather than just bridging experience and anticipation, they create the conditions of possibility of transference between the thinkable and the unthinkable. Not mere “facts of consciousness”, chez Adorno, but repositories and at the same time catalysts of the dialectic between a post-human vision and the phantasmagoria of humanity’s Being-in-itself, “untimely ends” can come to be understood as organising consciousness vis-à-vis the enduring spectre of human extinction.
Christos Lynteris is a social anthropologist working on biopolitical and visual aspects of infectious disease epidemics. He is Senior Research Associate at CRASSH, University of Cambridge, and Principal Investigator of the ERC funded research project Visual Representations of the Third Plague Pandemic. His recent publications include The Spirit of Selflessness in Maoist China: Socialist Medicine and the New Man (Palgrave Macmillan 2012) and Ethnographic Plague: Configuring Disease on the Chinese-Russian Frontier (Palgrave Macmillan 2016). He has edited Cambridge Anthropology’s special section Epidemic Events and Processes (2014) and co-edited Visual Anthropology’s special issue Medicine, Photography and Anthropology.
During her pregnancy, Puthea went to a private maternity clinic for regular ultrasound exams. This clinic was one of the larger and more popular in Phnom Penh at the time (2010) and one that provided echo poar, color ultrasound services.[i] Puthea preferred color to black and white scans because she could see more detail. Following the doctor’s narration, she could recognize feet, legs, and face. Of course, she told me, every ultrasound, even color, has limits to its clarity. “You have to wait until delivery to see what the baby looks like.” Nonetheless, Puthea got one of her later exams at a public hospital, which offered only black and white scans. She did this so that she would be “in the system” there. Puthea could afford a private clinic—she worked in an upscale hotel and her salary, together with her husband’s, placed them in Cambodia’s growing middle class. Yet she chose the public hospital because it offered the best delivery services in Phnom Penh, and was able to handle emergency or complicated cases.
Puthea’s black and white ultrasound scans. The cat-like appearance can be seen in the top image.
As many women do, Puthea took a copy of her ultrasound report home with her, and showed the report and accompanying image to her auntie, Ming (see Figure 1). Ming was the matriarch of the family; she helped to raise Puthea and her brother, and owned a popular guesthouse near the riverfront. Puthea was telling me about her most recent experience with ultrasound imaging over dinner at my house, and at this point, she paused. “Ming looked at the scan, and said, ‘It [the fetus] looks like a cat!’” The cat comment was distasteful to Puthea, even though she couldn’t exactly disagree with her auntie. The fetus never looked this way in previous color scans. The black and white image was strange.
I was hooked by this story, which came to me in the midst of fieldwork on imaging practices. Puthea’s strategies for scanning and delivery were by then familiar—taking into account cost, medical expertise, facility, stage of pregnancy, kind of ultrasound image, among other things. She wanted information that others also wanted from ultrasound exams: information about the sex of the child and when is it due; whether it has its arms and legs, mean dai mean choeng, as people commonly put it; whether its head is up or down; the location of the placenta. However, her story of the cat-like appearance in the image was unusual, and it beckoned; it suggested a porousness of life among others—humans, images, animals, and machines. I wanted to talk to Ming about it. Puthea laughed at my curiousity, but agreed to join me.
Ming discusses the ultrasound image.
When we met in the open lobby of Ming’s guesthouse, calm and quiet in the afternoon heat, Ming stood by her original assessment: “Moel tov?” she asked me. “Perhaps you can you see it, too?” She showed the picture to me, and then to a relative who was visiting from Canada (see Figure 2). Puthea rolled her eyes impatiently. “Or, perhaps the doctor was not so good,” she said. “Or the machine was old and unable to produce good pictures.” Ming had other ideas: perhaps it was because Puthea loved her small black cat too much; she always had it on her lap, petting it, talking to it. And maybe, too, it was because Puthea did not put up enough pretty pictures on the wall to influence the qualities of the fetus in a different direction. Surrounding oneself with nice images could help bring out vitality, health, and beauty.
Puthea was caught between irritation with her auntie’s “superstitious” line of thinking and feeling somewhat under the sway of cultural logics that connect practices of pregnant women with the physicality of the fetus. Here, visual and affective practices—petting the cat and perhaps loving it too much, not looking at pretty pictures—have material effects. In everyday Buddhist philosophy, conception involves the merger of a new physical form with a consciousness or spirit that has lived previous lives; the fetus is both developing and already developed. Pregnancy is a liminal time where a pregnant woman’s actions can influence the fetus—its form, its nature.[ii] But one need not be committed to Buddhist notions of rebirth and impermanence (or to process ontology) to grasp the plasticity of prenatal life.
This story is not only about the fetus. It is also about the ultrasound image. Ming suggested that Puthea’s actions and affect caused the fetus to look like a cat in the black and white image. Previous color images had not brought out these qualities. Ming’s reading made me wonder: how can an image intervene onto the object, making it come out better or worse, fixing its fate? People look to ultrasound imaging for clues about how the fetus is developing and what its nature might be. Perhaps they also hope that imaging can shift the process of fetal development, just a little?
Exceptional stories have an openness and unruliness to them. They require that we think across, diagonal, in staccato leaps. As I have wondered about transforming Puthea’s story into a case, I have looked to quite different conversations for help. Work on “maternal impressions” could help me think about how thoughts, feelings, and actions of pregnant women affect the physiognomy of fetuses.[iii] Work on color can unravel a bit more about color as substance, and as part of postcolonial flows of ornament and vibrancy.[iv] But then, what about black and white? Some consider black and white to be linked to a period of Cambodia’s past, to death, to a notorious set of images, even.[v] Work on portrait photography could help me think about aesthetic practices of relating to images.[vi] For example, concerning photo retouching in Ho Chi Minh City, Nina Hien writes: “Many people considered the photograph as not only as an index of the subject, but also as a live connection to it. Following a popular Vietnamese saying, ‘fixing the image, [could] fix the fate’” (2014: 68). This suggests that images can affect their referents and their beholders; is this partly what was at stake for Puthea and Ming?
Khmer has a good expression for stories like these: kuor aoy chngual (គួរអោយឆ្ងល់) a story one should wonder about, a story that is surprising, curious, hinting at a different reality than one is used to. Perhaps wonder is what motivates ethnographic case-work, akin to intrigue in medical work.[vii] Exceptional cases do require unusual and unruly accomplices. The work of transforming a story into a case is akin to ‘fixing’ the story, making it come out better or worse. Assembling accomplices shapes what the story is and can be. As I see it, one of the lessons of Puthea’s ultrasound scan is about life as process. Ultrasound is a technique for grasping hold of life to get a sense of what it is and what it may be. Another lesson has to do with the work of images. Cases, like the ultrasound image in this story, may intervene in myriad ways. They intervene on the objects they depict—bringing them out better, fixing certain qualities. They intervene on the readers—how readers sense, think, attune.
There are ways that exceptional stories fix ethnographers, too. I did not hear about another cat-like scan, yet after talking to Puthea and Ming, I listened more closely for image stories. I asked different questions. I worked to make this story into an exemplary ethnographic case. Can it bear this weight? Perhaps. If representations fix—whether with words, images, or as cases—that fixing is a process, impermanent yet consequential. Fixing the image fixes the fate. Fixing the case shifts what is possible.
Jenna Grant is Assistant Professor of Anthropology at the University of Washington, where she teaches anthropology of medicine, technology, visuality, and Southeast Asia. She is currently working on a book manuscript titled Seeing clearly: Medical imaging and its uncertainties in Phnom Penh. The book explores histories and contemporary practices of medical imaging in Cambodia’s capital. Jenna also works on projects with Medicine Anthropology Theory (MAT), and Visual & New Media Review, a blog of Cultural Anthropologyonline.
[i] “Color” ultrasound services can refer to Doppler imaging, 3D imaging, or a background tint or platform on 2D images. Puthea was talking about color 2D images. French and Khmer in the expression echo poar indicate the mixtures that make up Cambodian medicine: echo is from the French echographie for ultrasound and poar is the Khmer term for color. A great history of this medicine is Sokhieng Au (2011) Mixed Medicines: Health and Culture in French Colonial Cambodia. University of Chicago Press.
[ii] See Ang, C (1982) Grossesse et Accouchement au Cambodge: Aspects Rituels. ASEMI 13(1-4): 87-109.
[iii] On maternal impressions see, for example: Morgan, L (2003) Embryo Tales. In Franklin, S and Lock, M (Eds.) Remaking Life and Death: Toward and Anthropology of the Biosciences. Pp. 261-229. School of American Research Press; Stafford, B (1991) Body Criticism: Imaging the Unseen in Enlightenment Art and Medicine. MIT Press; or Taylor, J (2008) The Public Life of the Fetal Sonogram: Technology, Consumption, and the Politics of Reproduction. Rutgers University Press.
[iv] See Galt, R (2011) Pretty: Film and the Decorative Image. Columbia University Press; or Taussig, M (2009) What Color Is the Sacred? University of Chicago Press.
[v] On the Tuol Sleng photographs, see French, L (2002) Exhibiting Terror. In Bradley, MP and Petro, P (Eds.) Truth Claims: Representation and Human Rights. Pp. 131-55. Rutgers University Press.
[vi] I look to Hien, N (2014) Photo Retoucher. In Barker, J, Harms, E, and Lindquist, J (Eds.) Figures of Southeast Asian Modernity. Pp. 67-69. University of Hawai’i Press; Pinney, C (2003) Notes from the Surface of the Image: Photography, Postcolonialism, and Vernacular Modernism. In Pinney, C and Peterson, N (Eds.) Photography’s Other Histories. Pp. 202-220. Duke University Press; and Strassler, K (2010) Refracted Visions: Popular Photography and National Modernity in Java. Duke University Press.
[vii] On intrigue as a motivation for diagnostic work in medicine, see Saunders, B (2008) CT Suite: The Work of Diagnosis in the Age of Invasive Cutting. Duke University Press.
Sabine Arnaud’s On Hysteria: The Invention of a Medical Category Between 1670 and 1820 focuses on the socio-medical category before its better-known (and more heavily studied) late nineteenth century instantiations, not to trace the prehistory of hysteria from the seventeenth to early nineteenth centuries, but in order to demonstrate how hysteria takes unexpected form during these earlier epochs. The following commentaries draw out the historical and literary qualities of Arnaud’s study beautifully, and demonstrate how far Arnaud’s insight that this malady was as dependent upon writing and narrative strategies as it was the status of medicine extends. The commentaries are followed by a reply from the author. We hope you enjoy.
What Does Novelty Really Mean? Thinking About Centuries and Disciplines
University of Oxford
Medicine, The Age of Sensibility, and Sociable Knowledge
University of Turin
Researchers at MIT have launched Moral Machine, a web project to help gauge human perspectives on “moral decisions made by machine intelligence.” The project comes in the wake of a new Science study regarding the complicated tangle of ethics and driverless cars, where the classic ‘trolley problem’ has been scaled up for new technology. Scientific American, weighing in, writes that real autonomy for new vehicles hinges not on manufacturer issues but on the moral and ethical dilemmas inherent in the new technology. Consumer demand is high and climbing. Mainstream discussions, however, continue to black box the ethical and moral within larger questions about safety systems. The Atlantic traces the driverless car back to the 1920s, where desire was driven by “the promise of improved safety.” Similarly, Volvo’s ongoing Future of Driving survey, while heavy on questions of safety and trust, makes no mention of whether or not driverless vehicles have ethics or ought to be moral. Today’s news, that BMW has secured partnerships with Mobileyes and Intel, ensures that the debates around autonomous vehicles are sure to intensify.
MIT Technology Review has written about Kevin Esvelt’s campaign to regulate gene drives in order to avoid “doomsday” outcomes. Esvelt’s vision for a safe gene drive is distinctly caught up in moral projects. A safe gene drive–one built around transparency and community input–is “a way to rectify what [Esvelt] considers a larger failing of the universe, which is that evolution itself “has no moral compass.”…Gene drives, by giving humankind the ability to fine-tune the battle for survival, could make the world a more just place.” Esvelt’s gene drive concerns are echoed in many of the related debates over CRISPR, which is touted by many as something of a magic bullet for everything from food scarcity to cancer treatments. Where one might assume that tighter control of gene editing technology is the answer to fostering ethical distribution of its benefits, other geneticists, like Esvelt, say “public engagement is the most important factor in determining how genetic science will and should be practiced in America.”
Over at Motherboard, the medicalization of love is on the table in the form of real-life love (and anti-love) potions. Now that pharmaceutical interventions like MDMA or intranasal oxytocin may prove useful in fostering or enhancing feelings of love, the question becomes whether such practices are ethical. Issues such as consent and overtreatment are valid, and yet the author concludes “sometimes, it’s better to just break up.” Modafinil, the performance-enhancing nootropic drug, also conjures related bioethical quandaries. If the drug becomes widely commonplace in the workplace, for example, how might one discuss issues of coercion, competition and consent? So-called “smart drugs” also trouble notions of equity, a well-worn criticism of biomedical enhancement measures. Tech Insider argues, “if wealthy people can easily afford cognitive enhancement but no one else can, that’s likely to create an even more unequal society.”
Finally, technologist Maciej Cegłowski, in a talk on moral economies given at the recent SASE conference in Berkeley, had some important and timely things to say: “When we talk about the moral economy of tech, we must confront the fact that we have created a powerful tool of social control. Those who run the surveillance apparatus understand its capabilities in a way the average citizen does not. My greatest fear is seeing the full might of the surveillance apparatus unleashed against a despised minority, in a democratic country. What we’ve done as technologists is leave a loaded gun lying around, in the hopes that no one will ever pick it up and use it.”
More links of interest:
“In the Eye of the Coder” – Real Life
“My Four Months as a Private Prison Guard” – Mother Jones
“Introducing the Public Anthropology Institute” – Savage Minds
“Bad Intelligence” – The Nation