Post-Script, Still Longer Shadows: Guillaume Lachenal on “In the Shadow of Ebola” by Guillaume Lachenal
This commentary on Gregg Mitman and Sarita Siegel’s In the Shadow of Ebola is intended as a post-script to the forum on the film which appeared earlier this year. Lachenal prepared this text, written in Paris, for a special session of the African Studies Association meetings in San Diego on 20 November 2015.
The first time I saw the film, I was initially struck by the visual conversation about movements and circulations, and how they were canalized by doors and fences: roadblocks; gunfire to make people move away; that boy who couldn’t move, his leg demolished; the not-so-closed, not-so-policed treatment centers and their heavy metal doors; the visas issues; the drives along the US highways; the CCTV across the Chicago airport gates; and the world-famous US wire fence along a Wisconsin walkway. It was the film’s light touch at these choreographies that touched me first, and the way they gave tempo to the film. The strength of the film is there. I wish I had the energy to think and write more about the limpid narrative arc, the brutality of stories of a state-humanitarian power that “saves and shoots at” his people, and the delicate visual rhythm that threads pieces together.
In the present situation here in Saint Denis, other images and ideas come to mind as I rewatch the film, which suddenly looks different: the declaration of the “state of emergency”; the classic psychology lesson—part of any NGO package about Ebola (and post-terror attacks)—about the “denial phase”; the radio asking you to “stay home” until “it” subsides; the experience of being locked home by the army; the reassuring domesticity and continued play of children; the empty market street (my empty market street of Saint Denis, occupied by army and police and TV crews); the experts wearing white “PPE” (there against the virus, here to protect evidence about the assault and kamikazes in this little street of my little town where 5000 bullets were shot last night); the President’s voice, that reassures and terrorizes.
“I authorize the fumigation of all public domains.” This is the sentence in President Johnson Sirleaf’s declaration that I would like to comment on. This is a strange sentence, which condenses perhaps the most important running thread of the film, beautifully presented in a network of correspondences between the images and the commentary: the discussion about past and memory; the story of a country which wants to “put the past behind,” but which inherits its ruined infrastructure, pathogenic in its very state of being only half destroyed; the traces of past conflicts and of previous global health interventions (“Cholera Centre” written on the door); and the final meditation on the “memory that will remain”, the “memory [that] is going to continue”.
“Fumigation”: this is a strange occurrence here. To my knowledge, fumigation has never been recommended for Ebola, nor used. After a brief search on PubMed, formaldehyde fumigation may have been used in certain treatment units in the West, but there is no evidence of its efficacy or usefulness at all. What is crucial in the Ebola response is the washing of everything not destroyable (bodies, soils, houses) with chlorine, “sprayed” with classic gardening sprayers but without pressure (we call it aspersion in French), which is very different from a fumigation (no smoke here, but rather large particles of chlorine solutions, wetting the surface where they are sprayed). Nowhere the WHO, MSF or CDC speak of “fumigation”.
So where does this come from? Who wrote that sentence, as part of the state of emergency declaration? Is this a response to rumors and protests against spraying interpreted as aggression (and named as “fumigation”, or in some French-speaking areas “pulvérisation”?) in many Ebola-stricken communities in Liberia and Guinea? Is this an echo of the past, of the distant time of the malaria eradication scheme, involving DDT large scale (and intra-domestic) spraying, which began as early as 1945 in Liberia?[i]
“I authorize the fumigation of all public domains” (which also means: “I authorize the intrusion into all private domains”). I wonder what is the “fumigation” in our present situation here in France? What kind of useless ritual is our Algerian-war 1955 “State of Emergency” now authorizing, coming straight from a past that we want to leave behind? And why is it that I am ambivalently, inarticulately, longing for such a fumigation (but fearing it at the same time), an operation that is, we all know it, built-for-failure, that would violate public space and simulate protection?
And in the end, the last image of the kid arriving in Chicago chewing on a chocolate bar… It’s just what I want to do here in Saint Denis: to get high on sugar.
[i] James L. A. Webb, Jr., “The First Large-Scale Use of Synthetic Insecticide for Malaria Control in Tropical Africa: Lessons from Liberia, 1945–1962,” Journal of the History of Medicine and Allied Sciences, Volume 66, Number 3, July 2011, pp. 347-376 .
Guillaume Lachenal is Lecturer in History of Science at the Université Paris Diderot. He studies the history and anthropology of biomedicine in Africa.
In recent anthropological film practice we see a shift from established visual ethnographic paradigms focused on discursive representation (Crawford 1992), towards the realm of interdisciplinary cooperation and experimentation. Working with filmmakers and artists has a long history in visual anthropology, however recent theoretical debates open up new terrains for cooperation with various fields like science and technology studies, bio-medical sciences, forensic science, and architecture. As attention is directed towards the corporeal experience that informs intellectual understanding (Suhr-Willerslev 2013; Postma 2006; MacDougall 2006) the role of visual perception and representation is re-valuated once again. In this post I am going to interweave clips from my film and text to make a case for post-representational anthropology, that is, an anthropology that does not reveal the truth, but which advocates for different and intersecting ways of engaging with the worlds we inhabit.
I spent several months in the Romanian Danube Delta conducting fieldwork about the manifold ways people engage with “wilderness.” Upon returning from the field, before setting pen to paper, I started to work with the audio-visual data and to compile a narrative in image and sound. The anthropological film Swamp Dialogues (2015, 53 min.) thus became part of the analysis and the outcome of the research. Though the text and images of this ‘filmic thesis’ are aimed at an academic audience, it might still be useful, or perhaps necessary, to emphasize that the film is not an imprint or a document of reality, and neither are the 36 hours of footage which I recorded in the Danube Delta. Also, the film is not an illustration of the written analysis, and therefore it is not subordinated to the text. As MacDougall puts it, “visual anthropology may offer different ways of understanding, but also different things to understand” (MacDougall 2006: 220). Throughout the fieldwork I used audio-visual methods, not only because of ethnographic knowledge they generated, but because they enriched the possibility of the ethnographic field itself.
Whether approached as text or as object, the visual medium of film functions through implication, visual resonance, identification, and shifting perspectives that differ from the principles of most conventional anthropological writing. Film necessarily involves the audience in a heuristic process of meaning creation. A filmed field encounter can be communicated to viewers in many places, adding to the validation and reliability of findings as well as providing a more visceral kind of knowledge than academic writing tends to deliver. Swamp Dialogues brings the sensorial aspect of being in the Danube Delta to the audience, making almost palpable the cold, the foggy mornings, and the hardship of the fishermen but also the beauty, humour, and vitality of daily life in the marshlands. A camera, if used in a reflexive way, can make apparent that the fields we work within are not out there, but assembled through the documentary process.
The themes of my analysis, which later became the building blocks of the storyline for the film, emerged from the same anthropological curiosity which shaped other fieldwork decisions. This happened sometimes accidentally even while filming. In the village C. A. Rosetti for example, I was accompanying Tanti Dumitra for the umpteenth time to walk the cattle at dawn. In this specific morning, the foggy weather and beautifully filtered light made me take the camera with me. Working with the cows alongside my hosts for already two weeks gave me confidence with the animals, which were not running away, but obeyed my voice and long stick. This morning, however, I was carrying an unknown object with a big furry microphone, and paid more attention to filming than to herding. For this reason the cows took a slightly different path, leading us into a highly polluted region of the fabled nature reserve.
I did not know about the garbage dumped in the fields and I happened upon it while I was filming Tanti Dumitra. When I noticed the backdrop of my carefully framed image, the focus of the frame shifted to the waste. “Do they dump the garbage here?” I asked a few minutes later, after we had walked on. In the editing, I placed this question immediately after the visual encounter, while the viewer is still looking at the garbage. This is a unique moment of the film when I invite the audience to participate in my wonderment. Here, the camera becomes not only a tool to provoke or catalyse field-interaction, but an exploratory tool to literally co-create the situations that then demand comprehension.
What could be a better medium to highlight the communicative aspect of ethnographic understanding than the audio-visual ‘records’ of field-situations? ‘Dialogues’ in the title reflects the dialogical setting of fieldwork, but also ‘being in dialogue’ with different scientific discourses and the multiple layers of intentions and interpretations emerging from the field site.
Pels notes that the “romance of harmonious collaboration is […] an ethical injunction that intervenes in, rather than represents, the methodology of an ethnographic research project” (Pels 2014: 230). Perhaps while doing away with the imperative to represent (a singular truth), we can still keep alive the problem of representation—that is, the problem of how we advocate for different ways of knowing.
It would be hypocritical to claim that Swamp Dialogues was produced in a harmonious collaboration. Many of the people I have met refused or were just not so keen on being filmed. This happened often when talking to fishermen who were using illegal plastic nets or fishing without permits. Although I sometimes inadvertently filmed people who were obviously not happy with what I was doing, I always turned off the camera and never used any footage without consent. But more importantly: throughout the entire process of the research I did my best to lay the cards on the table. Everyone knew there were risks for all involved since we could not always anticipate the directions we would go.
The ethnographic film produced by this research gives room for reflection upon the ways field interactions shape ethnographic knowledge, emphasizing the deeply relational character of the understanding that ensues. At the same time it offers a medium where no verdict has to be given, where the contradictions and incongruities can be present within the same filmic landscape. In this sense, it evokes the complexity of the Danube Delta Biosphere Reserve characterized by the “polytheism of the scattered practices” (Mosse 2005) elaborated in the written part of the thesis.
The evocative character of the film is also performative, bringing into being a film-object which functions as a contribution to the mainstream environmentalist discourse, while also offering a platform for ethnographic debate that makes room for confusion and misunderstandings. Due to its sensorial richness, Swamp Dialogues adds to the quality and complexity of perception and understanding representing an intervention through which new insights are materialized. But above all, it is a testimony to how nature and environment are constantly produced by different practices, including the dialogue provoked by the anthropologist-filmmaker.
 The Danube Delta—“last European sanctuary”—is a UNESCO World Heritage Site.
Crawford, P. I. 1992. Film as discourse: the invention of anthropological realities. In: Crawford, P. I. – Turton, D. (eds.) Film as ethnography. Manchester University Press, 66-84.
MacDougall, David. 2006. The Corporeal Image. Film, ethnography, and the Senses. Princeton University Press.
Mosse, David. 2005. Cultivating Development: An Ethnography of Aid Policy and Practice. Pluto Press.
Pels, Peter. 2014. After objectivity: An historical approach to the intersubjectivity in ethnography. Hau: Journal of Ethnographic Theory 4 (1): 211–236.
Postma, Metje. 2006. From description to narrative: What’s left of ethnography? In: Postma, M., Crawford P. I. eds. Reflecting Visual Anthropology: Using the camera in anthropological research. Leiden/ Højbjerg: CNWS Publications/Intervention Press, 319-357.
Suhr, Christian and Willerslev, Rane, eds. 2013. Transcultural Montage. Berghahn Books, New York–Oxford.
- Beeld voor Beeld, Amsterdam (the Netherlands)
- DEF, Ljubljana (Slovenia)
- FIFEQ, Montreal (Canada)
- PELICAM, Tulcea (Romania)
- NAFA, Warsaw (Poland)
- ASTRA, Sibiu (Romania)
- Marburg International Ethnographic Festival (Germany)
- Jean Rouch International Film Festival, Paris (France)
- EthnoFilmFest, Munchen (Germany)
- Athens Ethnographic Film Festival (Greece)
- Best documentary in the Student Section: ASTRA Film festival Sibiu (Romania)
Ildikó Zonga Plájás studied anthropology and cultural studies in Romania and Hungary, later graduating in Visual Ethnography at Leiden University, the Netherlands. After her studies she has been a guest lecturer at Leiden University, and is currently working on a new research project at the University of Amsterdam. Swamp Dialogues is her first anthropological film.
This Friday, we are rounding up a set of feature essays that were published on Somatosphere over the summer. Unlike our previous summer roundups, which have focused on posts in a particular series, these features are varied in content, tone, and form.
“It is my first day of fieldwork in a London hospital, and I am following Joan into the wards for the first time. I fail to notice her stamp her palm against the red button before swinging the ward door open. A couple of steps in she stops, and I almost run into her back. “Just clean your hands before you come in,” she says. I look around, see the box, push the button, awkwardly, twice, to get enough spray onto my hands, and smear them together. The disinfectant is thin and disappears so quickly that I wonder if it does anything at all. The next time I am better prepared. I watch how Joan pushes the button without changing pace, and rubs her palms together swiftly while leaning into the swing-door with one shoulder. I push the button once, firmly, slowing only a little. I soon have this down to an art. I push the button without looking at it, without losing my stride, and feel a little rush.” —Courtney Addison
“The multi-level analytic strategy I developed was fundamental to my ability to bring this research into dialogue with a broader audience. I made sure to analyze the narrative data not only for the “emergent themes” but also for how the narrator made sense of the events of her life. Like Cheryl Mattingly’s theory of “emplotment” of narratives in the clinical space that “do” something, my research revealed how documented and undocumented Mexican immigrant women used narratives to reconstruct a meaningful life, and especially to make meaning and in some cases link traumatic experiences together.” —Emily Mendenhall
“The category of the ‘vulnerable population’ is itself a product of modern (American) bioethics, which invented the concept in its recent vintage and gave it specific meaning in public parlance. The field of modern bioethics emerged in the 1960s and 1970s, and in the post civil-rights period, the bioethical concept of the ‘vulnerable population’ was coded with contemporary rights-based concerns: about minorities, about prisoners, and more. The specific meanings and people associated with ‘vulnerable populations’ were embedded in 1970s human-subjects regulation, as well as in popular discourse. As a consequence, a new understanding of past experiences came into being for some people (like Eddie Flowers, a post-addict prisoner) but fit awkwardly with the institutional logic that brought other people into experimental settings (like Wilmer Wedel, a Christian service worker).” —Laura Stark
“I would certainly see my interest in montage as linked to my attempts to understand and write about the between as much more than a matter of classificatory ambiguity. I see montage as a practice of the between in this expanded sense — not just a method of cinematic or literary composition but a way of engaging the world that might be equally applicable to, say, thinking about genetic mutations or geological processes. I think you’re right then to say that a lot of my work seeks a performative as much as a conceptual engagement with montage. This comes partly out of a conviction that the between should be approached as a site of experimentation rather than something to be theorized and explained. It’s also informed by my sense that perhaps anthropology’s most radical potential to intervene in the world is not so much a matter of documenting existing actualities as of performing into being new realities, enacting new ways of being human (or other than human) that result from various kinds of encounters across difference.” —Stuart McLean, interviewed by Andrés Romero
by Zoë Wool
Duke University Press, 2015, 264 pages.
In After War: The Weight of Life At Walter Reed, Zoë Wool shares her experience working with some of the most grievously wounded veterans of the wars in Iraq and Afghanistan. During a year of research from 2007-2008, Wool conducted fieldwork with amputees recovering at Walter Reed Medical Center, the military hospital complex that has become emblematic of the post-war experience of American combat wounded service members.
Before she embarks on her ethnographic portrait of life at Walter Reed Army Medical Center, Wool makes explicit some important characteristics of the people and environment she describes, which are vital to understanding the context of her project. First, she notes that the overwhelming majority of her participants are male. Current critical military scholars are careful to avoid the homogenizing of the diverse uniformed members of the military as “men.” However, Wool acknowledges that the maleness of the demographic she was working with is omnipresent and the theme of normative masculinity it produces becomes central to this narrative. Wool is also clear that the experience of a decade’s worth of combat wounded veterans is quite diverse. The ratio of troops serving in either Iraq or Afghanistan shifted throughout the war, as did the prevalence of certain types of combat injury (gunshot wounds versus blast injuries from roadside bombs). Thus, there was a similarity of experience that profoundly shaped the narrative of the people whose lives are captured in this book, the overwhelming majority of whom served in Iraq and were wounded by explosions that resulted in lower extremity amputations. Finally, Wool notes that there is decidedly little said in this book about the violence and trauma experienced by civilians in the countries occupied by American forces. She is clear that this is not intended to imply that the suffering of these people does not matter and she provides some sources that give more details about the experience of Iraqi civilians.
The picture painted by Zoë Wool about Walter Reed and the lives it contains is one that stands in contrast to the extraordinary violence that maimed the bodies of the people recovering there. After trauma, pain, and loss, the residents of Walter Reed Army Medical Center seem to wander through bland domestic landscapes. The story told is the story of people who have survived something extraordinary and are struggling to make their lives as ordinary as possible.
Chapter One introduces Walter Reed and its atmosphere. The boringness of day-to-day life, artificialness of the habitable space, invasiveness of public observation, ubiquity of normative masculinity, and numerous contradictions encountered by rehabilitating soldiers are introduced. Chapter Two gives a summarized history of Walter Reed, paying particular attention to how the violence that has been present since its creation has informed its development as an icon in North American collective consciousness. Chapter Three provides a closer look at the complexities and contradictions inherent to life as a recovering combat-wounded soldier at Walter Reed, as an icon of the patriotic ideal and a human body that was broken in the realization of that ideal. Chapter Four considers soldiers’ bodies in the context of space, paying special attention to the manner in which the medicalization and mobilization of the “PTSD” diagnosis impacts its navigation. Chapter Five is an intimate view of intimacy at Walter Reed and in the lives of soldiers. Sexuality, dependency, family, and the ideal of normative domestic life dominate.
The ubiquitous theme in this book is the quest for a sense of normalcy in the lives of recuperating veterans at Walter Reed. Yet, what is often found in its place is a sense of ordinariness, a deceptively similar word that Wool uses to emphasize the distinctly extraordinary nature of life at Walter Reed, in all of its boring and unstable splendor. The “ordinary” is sometimes encountered as a device in the anthropology of suffering, drawing critical attention to “the unspectacular violence that can adhere in day-to-day living” (22). This generally implies a moral imperative to reject these ordinaries and invokes the recognition of a universal humanity that lies under superficial cultural difference. Wool does not do this in After War and it is this fact that distinguishes her book as an important ethnography, rather than just a good and well-written one. Unlike other contemporary works in the canon of military anthropology, Wool avoids grounding the injured soldiers featured in this book within the context of militarized globalization or imperialism and she resists casting them as passive victims exploited by the ever-oppressive arm of neoliberalism. Instead she describes the visceral details, to the greatest extent possible, of the embodied experience of being a wounded soldier recovering at Walter Reed between 2007 and 2008.
This is not to say that her ethnography is amoral by any means; it most certainly is not. Rather, it focuses almost explicitly on the local and, with the exception of her discussion of Walter Reed’s history in Chapter Two, it is temporally centered on the occasion of Wool’s fieldwork there. Ethical dilemmas are encountered through the book, requiring the reader to process the latent violence and systemic precarity that is interwoven in the soldiers’ lives. I became uncomfortable at one point in the reading, as Wool described her account of visiting one soldier in his room: “on his bed, he had offered to get me drunk, his wife was away, we talked about his penis… the potential of a sexual liaison was clearly written into the script of our interaction” (57). The discomfort that accompanies this narrative is intentionally situated there and ultimately serves a purpose in helping illustrate something arcane that is embedded in the subtle realities of life at Walter Reed: the awkward contradictory scenarios that conflate assemblages of wounded-warrior privilege and something very close to bare life (Messinger 2014) (57). It is from this same passage that Zoë Wool blesses us with the phrase, “Masculinity, meat, marriage, and death, all wrapped in an American flag blanket” (60).
The military, which actively utilizes periods of ritualized liminality to shape the minds and bodies of its agents (for instance Boot Camp, Ranger School, Jump School, or any other military training program where recruits enter as one thing, get broken down, indoctrinated, trained, and exit as something else) appears absurd at moments while trying to manage the severely disrupted lives of people contending with a series of binaries and contradictions (Webb 2014, 819). Military and civilian; qrtificial homes in a military context; families uprooted to Walter Reed to support their husbands and sons; bodies that still appear in uniform but have been transformed into something else; venerated portraits of normative masculinity that cannot walk without prosthesis or engage in sexual relations without pharmaceutical assistance; theatrical camaraderie with wounded brethren (but not really); elaborate lobster dinners from wealthy people who act inconvenienced by the special needs of wounded bodies; lives under ubiquitous assault by civilians who are belligerently determined to thank them for their service and sacrifice. Somewhere in the turbulence created by the collision of these contradictions exists the imponderabilia of these post-traumatic lives.
Readers looking for a flagrantly subversive text congeneric with Gutmann and Lutz or Joe Masco may be disappointed by After War (Gutmann and Lutz 2010; Masco 2014). Whereas the former are ethnographies of empire and the state to which human bodies are subject, Wool’s book is consistent with a contemporary movement in anthropologies of violence, which is grounded in phenomenology and embodiment. Thus, it has much more affinity with Kenneth MacLeish’s excellent Making War at Fort Hood (Macleish 2013). Zoë Wool does not directly tell us who to blame for the trauma and precarity in the lives of her informants; rather, she does her best to show us what they feel. As a military ethnographer and an anthropologist of violence and suffering, I know that many critical scholars understand this apparent lack of orientation to be an unconscionable omission in a work where the destructive manifestations of state power are so unquestionably present. Just as Zoë Wool does not tell us who to blame in her book, I will leave it up to the reader to determine how to regard this.
For anyone looking for an intimate depiction of military trauma or scholars looking for a strong example of how the rising generation of anthropologists are writing about violence, After War is a must read.
Gutmann, Matthew, and Catherine Lutz. 2010. Breaking Ranks: Iraq Veterans Speak Out Against the War. Berkeley: University of California Press.
MacLeish, Kenneth. 2013. Making War at Fort Hood: Life and Uncertainty in a Military Community. Princeton, NJ: Princeton University Press.
Masco, Joseph. 2014. The Theater of Operations: National Security Affect from the Cold War to the War on Terror. Durham and London: Duke University Press.
Messinger, Seth. 2014. “Wounded Warriors: The State, Healthcare, and Citizenship.” Paper Presented at the Annual Meeting for the American Anthropological Association, Washington DC. December 2014.
Webb, Christopher. 2014. “The Camouflaged Minority: Culture, Trauma, and Repatriation of the Student Veteran Diaspora.” University of North Carolina Asheville Journal of Undergraduate Research 2014: 808-821.
Christopher Webb is a PhD student in cultural anthropology at Duke University and researches militarism, trauma, nationalism, violence, masculinity, and social suffering. His current project concerns the process of reintegration into civilian society by combat veterans and focuses on how trauma and moral experience both guide and complicate this process. Christopher is also a veteran of the United States Army and served as an Infantryman in Afghanistan in 2006.
It was recently reported by the Guardian that there has been drop in organ donation rates in the UK.[i] It was also reported at about the same time that a woman successfully argued in the courts that her mother’s last will and testament should be over-ridden so that she might receive a bequest that her mother never wanted her to have.[ii] In different ways, in each of these stories the intentions of the living with respect to their own death come into tension with how those intentions are realised by those who are left behind.
Midcentury comedian Bobby Thompson played a character called the Little Waster, an anti-hero of working-class life in the 60s and 70s in north-east England, who captures the essence of the problem clearer than most in one of his tales. He is in his usual position, propping up a bar and wondering about how he is going to pay for his next drink and packet of cigarettes. A man comes up to the bar that he recognises as the local undertaker. The Little Waster thinks for a moment and then asks him, “How much are you going to charge our lass for my coffin?” The undertaker weighs him up and down and comes up with the figure of £10. The Little Waster, seizing his chance, replies, “Well giv’ us two pound and charge our lass twelve”.
At the time this joke was told, occupations and lifestyles determined that men typically died long before their wives. The waster knows this and also knows that his wife—referred to as ‘our lass’—is entrapped in the unavoidable obligations of kinship. She would pay £12 for his £10 coffin, and he would get £2 as a kind of proleptic mortuary payment to fritter away on his worldly pursuits. What the joke highlights is the problematic back and forth between our own wishes in death and the people who must realise these. The problem is that we will never be around to organise our own funerals or see that our wishes are carried out. As artist Marcel Duchamp so famously and succinctly captured on his gravestone: “After all, it is only others that die”. So, in the twenty-first century, what are the moral obligations of the living to the dead? This is a very important and pressing question, and one that everyone, in one way or another, will have to face.
Take, for example, the recent case of Heather Ilott of Ware, Hertfordshire. Heather was estranged from her mother following a teenage elopement that was disapproved of by her mother, who responded by disinheriting her errant daughter. Upon her mother’s death in 2004, the threat that was made decades earlier was carried through, and her ‘last will and testament’ declared that her £486,000 estate was to be left to various animal charities, leaving her daughter with nothing. Heather took the case to court and, after a slow progression through lower courts, the Court of Appeal ruled that she should receive a third of the estate.
Children being excluded from wills is, of course, nothing new. There are many tales of wayward children being ‘cut off with a shilling’, that is, given a derisory amount in a will in order to silence any other claims. In Heather’s case she didn’t even get the shilling. What is different in this case, however, is that the post-mortem adjudication in the courts signals a kind of rupture between the intentions of the living and the ability of various agents and agencies to ensure that these are carried out. The BBC reported that James Aspden, the solicitor representing the charities who were destined to receive the money, said it was a “worrying decision for anyone who values having the freedom to choose who will receive their property when they die”.[iii] A last will and testament, it would seem, is nothing of the sort.
While a person’s intentions and their realisation post-mortem are difficult where material property is concerned, these are are nothing compared with the plethora of issues that are currently opening up around the body and its fate after death. Let us begin with the National Health Service Blood and Transplant (NHSBT) Organ and Transplant Activity Report for 2014-15, which reported that deceased organ donation rates have dropped by 3%. This piece of news has alarmed the UK’s NHS Blood and Transplant community. It was suggested that the reason for the drop was not just because fewer people were dying in circumstances in which secondary use could be made of their organs and tissue, but also because, as the report states, “there has been no improvement in the consent/authorisation rate which remains stubbornly below 60%”.
Although expressed in the rather bland language of ‘consent’ and ‘authorisation’, these issues touch on mundane but complex questions of relationships, values and how these are expressed and communicated, not just in an individual death (a.k.a. ‘consent’), but also in the social setting within which every individual death is managed and given meaning (a.k.a. ‘authorisation’). Tragic circumstances can allow family harmony and solidary functioning to be heartwarmingly expressed, but they might also be occasions for disagreement, conflict and dysfunction to surface. What happens if I have given my consent to organ donation by virtue of having signed up for the Organ Donor Register, but in the event of my sudden demise my nearest and dearest can’t quite countenance my cornea, lungs, intestine, kidneys, liver lobes and much else being dispatched across the country and into cold storage, however worthy the cause? Indeed, family refusal rates are identified as a particular impediment to retrieval levels in the above NHSBT Activity Report. Or, what if I am not on the organ donor register but my family decides that it is ‘probably what he would have wanted’ (knowing full well that it wasn’t) and insist on having my organs and tissues dispatched anyway?
The issues become even more interesting when it is not only my family and friends who are puzzling over what to do in the event of my death, but when the state also enters the scene as the arbiter of what is rational, proper and benevolent. As a way of increasing organ donation rates many countries have been contemplating ‘opt-out’ schemes. Such a scheme already operates in Spain and one is coming into being in pilot form in Wales on December 1. At the moment the UK NHS operates a soft opt-in scheme, that is, I have to be on the ODR and organ retrieval will not take place if my family have any objections. There have been suggestions that a hard opt-in should come into play as a way of raising the number of donations. In such a scheme, my appearance on the ODR would operate as a legally binding contract, meaning that whatever objections my family had to the retrieval of my organs, the consent would over-ride and lack of ‘authorisation’ would count for nothing. My guess, however, would be that it would be a brave or extremely insensitive surgeon that went ahead with organ retrieval in the face of a family’s insistence otherwise. Opt-outs are a rather different matter in that a presumption is made that a person is a potential donor unless they have actively opted-out of the ODR. Implementation of such a scheme would suddenly turn the population of the UK into a vast field of publicly maintained organs and tissues which are there for the NHS to harvest on behalf of the nation unless individuals have expressly declared otherwise. As in the opt-in scheme there are soft and hard variants according to the presence or absence of the deceased’s family in the decision to proceed with retrieval. A soft opt-in would see everyone who hadn’t opted out of the ODR as a potential donor unless family raised objections. The hard version would give the family no such veto and operate with the rather contradictory notion of presumed consent. The scheme that will come into play in Wales is the soft opt-out version—even if I have not signed the register my organs will be deemed available, but my family will have the final say.
Each of these examples highlights fundamental changes in the way that I might think of my death in the context of my life. Moreover, these reflections are situated in my relationships with others and how they might think and act in the event of my death—What would he have wanted? Once upon a time, the relationship between family, property (including the body) and the will of the dead trundled along on well-defined tramlines of religion, ritual and law. In the Christian tradition, as well as the many secular ones that have been laid down upon it, in the UK the ‘last will and testament’ was just that: a set of inviolable instructions to be followed by those who are left behind. These verities also gave out onto a conventional and accepted repertoire of immortalities. Now, however, a much more complicated existential challenge is coming into view. The possibilities are expanding for how I might live on beyond my death and not just as a life-saving body part transplanted into the body of a stranger but as stem cells, tissues or as a plastinated teaching aide. A campaign strategy for the NHSBT to raise the numbers committed to donation is to encourage families to talk about what should happen in the event of a death—to ‘have the conversation’. Such conversations are believed to make the ones that will at some point take place across the great divide that separates the living from the dead that much easier for all concerned. Perhaps Bobby Thompson’s conversation with the undertaker was not quite what the NHSBT had in mind, but he had the right idea by having the conversation at all.
[i] James Meikle, “Number of people donating organs after death falls for first time in 11 years, Guardian, July 19, 2015.
[ii] Owen Bowcott, “Daughter wins £164,000 after decade-long legal battle over will with charities,” Guardian, July 27, 2015.
[iii] Clive Coleman, “Woman rejected by mother in will wins £164k inheritance,” BBC News, July 28, 2015.
Bob Simpson is a professor of anthropology at Durham University, UK. His research interests centre on the anthropology of biomedicine, bioethics and biotechnology. He was a member of the UK’s Nuffield Council on Bioethics Working Party on Donation and Human Bodies between 2009-11 and has published numerous articles on the circulation of blood, gametes and tissue in a variety of social and cultural contexts.
In June, we debuted an extensive new series on Somatosphere, The Ethnographic Case. Edited by Emily Yates-Doerr and Christine Labuski, the series is organized on an expanding, virtual bookCASE, with each individual piece expanding our understanding of case studies — what they are, what they can teach us, and what work they do shaping both our objects of study and our academic fields.
“This case is a story that a soldier told me. I call her Kelly, and she said it was ‘the craziest story I was gonna get’ from her. So for her it was an extreme, a worst case, but also a kind of telos of conditions she lived with and feelings she felt every day in occupied Iraq. It was a case of something not happening. As is fitting for those tensions of normalcy and emergency and rule and suspension that characterize state violence, it was both exceptional and part of a pattern: the pattern of soldiers’ embodied terror and vulnerability (even as they surely inspired terror in vulnerable others) and the pattern of the mechanisms that shaped their thought and action. It was a case of something that might have happened to Kelly but didn’t, that she might have done but didn’t do, and of things that were treated as if they were real even when they turned out not to be.” —Ken MacLeish
“‘You can write if you want,’ Estrella gestures to my notebook that sits on the table. I write instead on a napkin. It feels less official and thus less obtrusive. “Unless you prefer napkins… This is what you call anthropology?” She laughs and pats my hand, pen frozen on the flimsy paper. I look at my scrawl on the napkin. I have written the date, her chosen pseudonym, and the location of the café where we sit. ‘Yes,’ I tell her. This is what I call my anthropological practice of ethnography. I bring out my field notebook, already swollen with the additions of drawings and pressed plants that women have given me… ‘Do you always ask people what name they want to use?’ She wanted to know. ‘Yes.’ At the time of this initial dialogue with Estrella in 2011, this was true.” —Ruth Goldstein
“Between the nurses, social workers, police detectives, and crime lab analysts who are the most frequent expert witnesses participating in the trial, a variety of absences were explained away: the lack of injuries, lack of finger prints, imperfect DNA matches or the absence of DNA altogether, and delays in disclosure by victims of sexual assault. Whether compelling and insistent, or repetitive and tedious, the parade of witnesses who testify to the absence of evidence establishes that the lack of physical evidence is securely normal. The systematic materialization of the lack of evidence makes way for the testimony of the victim.” —Sameena Mulla
“The two friends appraised their respective narratives, taking turns like playing a game of catch. Although I had been conducting participant observation in this men’s caregiver support group for several months, and was aware that Yasuda-san’s mother and Takeda-san’s wife were both living with advanced dementia, this was the first time I realized that the men had also made the decision to give artificial hydration and nutrition to the ones they cared for. The ethical uncertainty of the decision lingered. Yasuda-san was worried that perhaps he was not merely preserving her life, but extending it too long. These decisions about life-extending care could only be appreciated, as the two men agreed, case by case.” —Jason Danely
“Was sperm an effective vehicle through which a case could be made for the regulation of pesticides and pollutants in China? It seems the DeTox Lab chose to first focus on male infertility partially because a broader discussion of post-industrial sperm decline was already occurring in many nations around the world. In China, the nuances of this conversation connected rising rates of male and female infertility to rapid social and economic transformations that had occurred since Reform and Opening began in the late 1970s. Under what the Chinese government called Socialism with Chinese Characteristics, the organization of economies, labor, and other aspects of daily life shifted. Male reproductive health specialists and media outlets listed lifestyle changes and increased stress as potential reasons for the accompanying post-Reform and Opening shifts in sperm counts: in one study, from approximately 100 million per ml in the 1970s to 40 million per ml in 2007. More recently, the degradation of Chinese sperm has been explicitly linked to a degradation of the ‘Chinese environment.'” —Janelle Lamoreaux
“I want to consider the possibility that waiting one’s turn in line, what we might call waiting democratically, brings with it the threat of disarticulation from those social relations that give value to particular lives. Reflecting on Brazilians’ invocations and subversions of egalitarian waiting opens a window into a mode of suffering that liberal institutions sometimes elicit, especially in a context of austerity. In what Javier Auyero calls the ‘patient model’ of governance, the neoliberal state imposes long waits and thus ‘manipulates poor people’s time’ to produce their docility (Auyero 2012: 157). Here I suggest that poor people who inhabit democracy face another form of suffering, one associated with the threat of being reduced to bare life as they anticipate the materialization of their rights.” —Aaron Ansell
Far away from the frontlines of the Ebola outbreaks in Sierra Leone, Guinea, and Liberia, where people and their caretakers die from the disease, new forms of humanitarian aid and global health financing are being leveraged behind closed doors. In Washington, D.C., London, and Geneva, long-standing government-to-government models of global cooperation and international development assistance, imperfect as they are, are being supplanted by new forms of finance that prioritize profits for private shareholders. Global health futures, it appears, are poised to become more deeply embedded with private instruments of high finance. Some economists argue that these new forms of finance are new models of global cooperation that will benefit millions (e.g., Collier 2013). Some venture- and philanthrocapitalists posit that these new forms are necessary to motivate nation-states and individuals to fix global health problems (e.g., Egerton-Warburton 2015). And while new forms of financing introduce new opportunities, they also introduce new vulnerabilities and risks to global publics.
Market-driven pandemic response financing is currently being promoted by the World Bank as the means for attending to funding shortfalls. In a turn away from redistributive, taxpayer-based donor health aid, financial instruments like the World Bank’s Pandemic Emergency Facility — known more colloquially as “Ebola bonds” — look increasingly likely to finance future global pandemic response. The need to study these financial instruments is urgent: instrument ‘making’ is happening now at the World Bank and mostly out of public view. Word on the street is that World Bank personnel and others expect some pushback against this instrument because of the way it uses market gains and speculation to make money for human health crises. Markets may make money, but they also lose it. How will the public verify that future pandemic funding has actually been secured? Private sector reporting standards are far less transparent than those for tax-payer public monies, which means that future financial gains and preparedness lack the usual oversights and accountability measures.
How will investors make money on Ebola? The same way they currently make money on natural disasters. Cat bonds — short for catastrophe bonds — have been around for several decades and insure events like, for example, bad weather in the Pacific islands that causes food crop and infrastructure damage. To hedge against such events, the World Bank has facilitated the development of catastrophic insurance instruments, and countries with severe weather histories have been encouraged to buy such insurance. Cat bonds are usually short-term bonds of three years, with shares purchased by investors who are willing to ‘hold’ the chance that an insurance company will pay out claims if a natural disaster like a flood or hurricane hits. Investors ‘buy’ the risk by buying premiums on existing policies; their money is pooled as a means to frontload funds in the case of a catastrophe. They make money when they hold a three-year cat bond for a natural disaster that does not happen (Lewis 2007). The logic goes that when many countries buy insurance protection and if those products are pooled and bundled, the risk that the insurance companies will have to pay out more than they have collected in premiums is spread out over more geographies. Lesser geographic concentration of possible payout is better for the insurer and reinsurance investor.
Applied to Ebola, the same model aims to similarly pool and frontload money from investors willing to buy Ebola bonds. The World Bank wants to create and sell these new insurance products so that private investors, rather than nation-states, are fronting response money. Poor countries would be encouraged to buy or be assisted in buying pandemic insurance. The thinking goes that the need for public multilateral funding of disease response will diminish if Ebola bonds catch on.
Commodifying infectious disease, natural disasters, and, yes, even extreme mortality is an attempt to build future financial preparedness with the incentive of financial return. The idea is to use the market to spread out the financial risk to investors and insurers. There are multiple compositions of insurance and reinsurance; some involve arbitrage, hedge funds, and derivatives, never mind that these financial instruments come with the greatest degrees of risk and the highest chance that money will be lost. This is not an exaggeration. Recent evidence shows that the bundling of insurance policies increases fiscal precarity. During the 2008 global economic crisis, one of the deepest, most detrimental fault lines in the economy was the way the mortgage insurance giant AIG (American International Group) bundled mortgage guaranty insurance polices and sold and resold them. This co-mingling of financial stakes with stakes of life and death — the loss of money versus loss of life — takes the global health community into a precarious new financial order.
World Bank advocates of the facility argue that the world needs a Pandemic Emergency Facility because there is no existing fast-disbursing finance mechanism. The Facility, they say, would remedy this. In this view of the outbreak, Ebola got out of hand because there wasn’t enough money. While it is undeniably true that money is essential to any pandemic response, medical anthropologists have documented bottlenecks of many other sorts — communicative, affective, and bureaucratic — that delayed the fast and appropriate care of sick people, their familial caretakers, and health personnel. Regardless, the World Bank theorizes that with this facility money would be dispensed quickly and the pandemic managed prudently. The Ebola bond is a parametric insurance instrument (rather than an indemnity) that ‘holds’ the money until funds are ‘triggered’ and payouts are made to pre-approved countries and organizations, including the World Health Organization. Anthropologists have already documented at some length how pre-agreed triggers and pre-approved recipient processes are particular kinds of political bottlenecks that can slow and stall eligibility for the most vulnerable people with the greatest need, regardless of the amount of money at the ready. Money is not the only problem in an Ebola outbreak.
Banking praxes have been documented by anthropologists as structurally detrimental to the health of populations, not least in Dying for Growth: Global Inequality and the Health of the Poor (Common Courage Press 2000), a book co-edited by Jim Yong Kim. (Kim, a medical anthropologist, is currently president of the World Bank.) Structural Adjustment Programs (SAPs) — a World Bank and International Monetary Fund instrument championed since the 1970s — have been shown to intensify immiseration (Pfeiffer and Chapman 2010) and, because of required cuts to public health response systems, shape the health of millions (Kentikelenis et al. 2015). The same institutions that endorsed SAPs is now recommending Ebola bonds. There is no denying that, as a matter of doing business, instruments of global profiteering strategically move into less regulated, less sovereign global spaces, like those in West Africa. In nation-states like Sierra Leone — where government drawdown has been mandated since the 1980s as a condition of receiving foreign loans and aid — social welfare sectors like health are highly vulnerable to not only unregulated profiteering, but also to going along with financial programming recommended by global institutions.
Ebola bonds are only one aspect of the financialization of the disease. Patent buy-up in the life sciences is also well under way. Global philanthropic organizations are quietly joining with private patent acquisition companies — sometimes called patent trolls — to “take on some of humanity’s toughest problems through the power of invention by drawing on resources normally reserved for commercial pursuits in the developed world” (Intellectual Ventures 2015). Intellectual property is among the world’s most valuable financial assets in our global health knowledge economy, and patent monopolization has consequences that reach far beyond financing. The legal right to control the use, application of, and procedural techniques for genes, pathogens, and cell lines, for example, levies powerful influence over global health science, discovery, and innovation. Patent acquisition companies say they are providing a service, buying up and bundling together for scientists the intellectual capital they require to create new products and knowledge. Critics beg to differ after observing that some of these companies are buying up patents to intentionally establish monopolies over particular health technologies and commercial life sciences sectors, as well as intending to drive up the price for the use or purchase of patents. Another group of patent acquisition companies are simply buying up patents and then suing any group of users they can find for patent infringement without making anything more than the lawsuit itself as their primary economic labor.
As the world moves more deeply into a world where clinical and global public health efforts are comingled with investment logics and financial knowledge practices, global health futures are becoming more intrinsically shaped by private instruments of high finance. As with the Pandemic Emergency Facility, we need to pay close attention to the originating policy architectures (Erikson 2008). The global leaders and institutions in place to manage Ebola and future pandemics are promoting and engaging in a kind of financial experimentality (i.e., Nguyen 2009, Petryna 2005). With some stealth, global philanthropic foundations are quietly leading the way in the global transition of global public health funding models to private financial models featuring shareholder return on investment, resulting in a further de-coupling of public finance from public health goods. Anthropological research cautions that new technologies and administrative praxes do not always link up with improved outcomes for people. Using ethnographic method to examine what new financial innovations benefits whom opens up analytical tracks to assess differential stakes in well-being — corporeal, financial, environmental — and provides analytical traction to assess financial instruments capable of both advantage and injury. The moment is now to assess what is working to reduce human suffering and what financial structures may also need to be upended because they, in the final assessment and however unintentionally, hurt people.
We are in an historical moment when nation-states, businesses, and thought leaders throughout the world are working with tensions between state and market forces. The tensions are revolutionizing global health financing, introducing legal rights to monetary return within the global health sector, and allowing for higher degrees of shareholder self-interest than ever before. Many of the new financial instruments for health I’ve touched on here bypass democratic nation-state processes, foreign policy directives, tax, and regulatory regimes. As a global community, we do not know what these new arrangements may mean for human health. A global health driven by investors’ expectations of return is a public health risk of yet unknown magnitude and scope.
Collier, Paul. 2013. Aid as a Catalyst for Pioneer Investment. WIDER Working Paper No. 2013/004. Oxford: UNU-WIDER. http://www10.iadb.org/intal/intalcdi/PE/2013/10883.pdf, accessed Oct 2, 2015.
Egerton-Warburton, Christopher. 2015. Creating a New Source of Capital for Global Health. Reimagining Global Health. http://ic2030.org/2015/07/source-capital/, accessed Oct 24, 2015.
Erikson, Susan. 2008. Getting Political: Fighting Smarter for Global Health. The Lancet 371:1129-30.
Intellectual Ventures. 2015. http://www.intellectualventures.com/globalgood/, accessed Oct 21, 2015.
Kentikenlenis, Alexander, Lawrence King, Martin McKee, and David Stuckler. 2015. The International Monetary Fund and the Ebola Outbreak. The Lancet 3(2): e69–e70.
Nguyen, Vinh-Kim. 2009. Government-by-exception: Enrolment and Experimentality in Mass HIV Treatment Programmes in Africa. Social Theory & Health 7:196–217
Petryna, Adriana. 2007. Experimentality: On the Global Mobility and Regulation of Human Subjects Research. PoLAR 30(2):288-304.
Pfeiffer, James and Rachel Chapman. 2010. Anthropological Perspectives on Structural Adjustment and Public Health. Annual Review of Anthropology 39:149-65.
Susan L. Erikson is an anthropologists and an Associate Professor of Global Health in the Faculty of Health Sciences at Simon Fraser University, Vancouver, British Columbia. She can be reached at email@example.com.
Image Credit: The original image was downloaded on November 3, 2015 from the Center for Disease Control and Prevention’s Public Health Image Library. Created by CDC microbiologist Frederick A. Murphy, this colorized transmission electron micrograph (TEM) revealed some of the ultrastructural morphology displayed by an Ebola virus virion. The original was modified on November 3, 2015 by Lukas Henne.
Last month HAU and Cultural Anthropology published a proposal for an open access anthropology publishing cooperative written by Alberto Corsín Jiménez, John Willinsky, Dominic Boyer, Giovanni da Col and Alex Golub. The American Anthropological Association’s (AAA) current contract with Wiley-Blackwell expires at the end of 2017 and the organization announced recently that it would be inviting publishers to bid for the business of publishing its 22 titles. Addressed to the AAA, and conceptualized as an OA alternative to its current model, the proposal for a publishing cooperative has stirred up a considerable amount of conversation on social media and on anthropology blogs. To find out more about the proposal, I got in touch with and posed a few questions to two of its authors, Giovanni da Col, the founder and editor of HAU, and Alberto Corsín Jiménez, Associate Professor in Social Anthropology in the Department of the History of Science at the Spanish National Research Council in Madrid.
ER: Tell me a little about the background for this proposal. How did it come together?
CDG & ACJ: The idea of a cooperative is the natural development of the model launched by HAU through its Network of Ethnographic Theory in 2011 and adopted more recently by other open access initiatives such as Cultural Anthropology and The Open Library of Humanities. We are proposing a no-brainer model for reinventing academic publishing. Rather than having thousands of institutions forced to buy expensive bundles from corporate publishers with revenues over 40%, we can have a limited numbers of institutions paying a smaller amount to guarantee the rest of the world free access to top-notch disciplinary research. The idea for LIBRARIA harks back to a Wenner-Gren workshop held in Madrid in October 2014. At the workshop the two of us talked with John Willinsky (Public Knowledge Project) about alternative OA cooperative scenarios to the current ecology of scholarly publishing. Enthused by the productivity of our exchanges, over the following weeks we began drafting a proposal for one such cooperative project. We made quite some progress very quickly and in just under four months managed to spark the interest of a number of learned societies and journals, including the Wenner-Gren itself, the European Association of Social Anthropologists, the Society for Social Studies of Science and Technology (4S), the Society for Cultural Anthropology and HAU, among others. We also managed to entice SPARC to join the project. (The Scholarly Publishing and Academic Resources Coalition is the world’s largest alliance of research and academic libraries and a leading advocate for open access.)
The relevance of such a project could not pass unnoticed: last May the MacArthur Foundation invited the Public Knowledge Project to pitch a project on open access futures that used LIBRARIA as one of its case studies. We are now embarked in a two-year project that aims to bring a variety of stakeholders together to model a robust, large-scale cooperative alternative to commercial publishing. (More on the PKP MacArthur study here: http://oa-cooperative.org/)
ER: The proposal does a great job of laying out your cooperative model in detail. Now let’s hear the elevator speech.
CDG & ACJ: There are more than enough resources in the system to pay for Open Access. What is needed is a new system of payment streams. What we propose is an imaginative yet robust redesign of the ecology of partnerships between libraries, funders, authors, learned societies and journals, such that they all become stakeholders in a sustainable publishing cooperative. We would (cooperatively) own the journals.
ER: The proposal briefly describes a partnership of learned societies and journals called Libraria. What projects is Libraria undertaking?
CDG & ACJ: LIBRARIA is an agreement between journals, learned societies, SPARC and PKP to explore and test a variety of models that will enable members to flip their subscription journals to open access publications, whilst simultaneously offering long-term economic sustainability to those journals that are already OA.
This requires our pooling and analysing complex databases, which do not always speak to each other. Thankfully SPARC is helping us make sense of all this information.
For example, we need to know production costs for each journal, including the costs of editorial or managing offices, or simply the amount of money that learned societies are earning from journals and using to cross-subsidize other operations; libraries’ subscription lists and access fees; APCs for each journal; offsetting arrangements between libraries and publishers; etc.
In a nutshell we need to understand, for each library, journal and learned society, what their needs are, how much they spend on meeting such needs, and what scope there is for rewiring their needs and monies into a new cooperative system.
ER: The funding for your cooperative model seems to come largely from library partnership subsidies. Do you see other potential sources of funding? For example, the model developed by HAU involves a cooperative which includes departments of anthropology and other units.
CDG & ACJ: We are proposing a cooperative model that aims to be self-sustainable in the long term. In essence, we are simply asking libraries to redirect their acquisition funds to a cooperative structure of which they would become themselves stakeholders.
We do of course contemplate applying for additional sources of funding. For example, a seed grant to help us design and develop a specific leg of our project, say, to work on developing its underlying IT infrastructure.
However, the whole point of the cooperative is that its members are its stakeholders. So although we will of course look for – and welcome! –additional sources of funding from research councils, foundations, etc., our main objective is to enlist organisations with a commitment to becoming partners and stakeholders.
Note also that some members (libraries, infrastructure providers such as PKP) will likely be in a position to provide also in-kind services to the cooperative, for example, journal hosting services, indexing, archiving, etc.
ER: Concretely, what would the AAA have to do in order to consider a cooperative model as a serious alternative to another contract with Wiley/Blackwell (or another publisher)?
CDG & ACJ: First, we think it is important for everyone to know that this CAN be done. We have the time, the expertise, and the resources. We are also pinning down the numbers. As explained in our proposal, PKP and SPARC have both offered to dedicate resources to this project *at no expense* to AAA.
In practical terms, this is what it would take for the AAA to consider a cooperative model:
1. To announce its willingness to join the PKP-MacArthur and LIBRARIA’s data-gathering and modelling exercises.
2. Inevitably, AAA would have to modify the RFP process in order to make time for the cooperative to come up with its financial and governance model.
3. We would use this time to prepare a robust business plan with the help of PKP and SPARC , which at this stage would include a list of library partners, infrastructure providers, publishing contractors, etc.
Why is it a no brainer? Because LIBRARIA will not be the publisher but only the mediator between the partners and the infrastructure provided by university presses (which are non-profit; we should clearly differentiate between Wiley-Blackwell and University of Chicago Press, for example). The recent foundation of HAU Books in collaboration with University of Chicago Press also shows that a collaboration between learned societies furthering open access (such as the Society of Ethnographic Theory, which publishes HAU Journal and HAU Books) and university presses is possible and effective.
The key thing here is to understand that a cooperative proposal would not be just one of many contenders for the AAA publishing program. If the AAA decides to “go cooperative” it wouldn’t be just signing a new publisher, it would be moving into an entirely new ecology of scholarly communications.
ER: Finally, what can rank and file AAA members do to support this effort?
CDG & ACJ: Everything! They can express interest in the cooperative project by bringing it to the attention of their section leaders and/or journal editors; they can share their enthusiasm for, or endorsement of the cooperative by writing to the members of the Executive Board, members of the Anthropological Communication Committee or the Committee on the Future of Print and Electronic Publishing. The AAA has also named an Advisory Group to guide the association in the RFP process. The group is comprised of incoming AAA President Alisse Waterston, who will serve as its chair; incoming AAA President Elect Alec Barker; AAA Treasurer Ted Hamann; Section Assembly Convenor Miguel Diaz Barriga; ACC Chair Mark Aldenderfer; incoming CFPEP Chair Sally Merry; incoming Executive Board Student Seat Saira Mehmood; and CFPEP Chair Deborah Nichols will serve ex-officio. These advisors will be responsible for considering all the information relevant to the RFP process, reviewing bids from publishers, interviewing semi-finalists, and recommending a publishing partner to the AAA Executive Board. We are sure members of the Advisory Board would love to hear about the cooperative proposal directly from the membership!
A black plastic garbage bag, held in place by masking tape, covered the drinking fountain jutting out from the brick wall. It was an incongruous sight in the otherwise clean, carpeted church hallway on the outskirts of Charleston, West Virginia. The thick covering separated observer from object, simultaneously hiding and calling attention to what it ostensibly sought to obfuscate. “[Facilities and Maintenance] still haven’t replaced the filters,” I was told, as I sopped up the syrup under my pancake and drank bottled water with the congregation members. “The bag is to keep anyone from accidentally drinking contaminated water.”
Five months earlier (on January 9th, 2014), the county’s municipal water supply was abruptly declared off limits for all use due to contamination with crude MCHM (4-methylchycloheanemethanol), a chemical used in the cleaning of coal. No brushing teeth with the water. No showers. No clothes washing. One could still flush the toilet, but even then it was advised to avoid standing over the toilet. Underlying these restrictions was an uncomfortable reality: no one knew whether the chemical threatened human health, and if so, at what levels.
Remembering to follow the blanket restriction on use did not come easily. “I would forget and brush my teeth with it,” one coal-worker who lived at the end of the water distribution line told me, noting that he’d gotten the chemical all over himself at work before. A retired nurse living at the top of a hill reported that her neighbors had complained of the smell, but she never noticed it. Yet for many, the smell helped them remember. In fact, the chemical leak that caused the contamination was first identified due to crude MCHM’s intense, sharp, sweet, licorice-like smell. The odor permeated downtown Charleston, lingering for days as the chemical plume passed. “I could smell it,” a local baker told me. “Outside. All the time. I joked after everything had happened about having to go home to Sissenville (a suburb of Charleston) to get water, ‘home sweet smell.’” A middle school teacher noted that she could still smell the MCHM in bathrooms and her classroom despite the coverings.
In the days and weeks that followed, citizens faced a paradox: although experts quickly declared the water free of crude MCHM, and thus safe to use, the bodies of many throughout the Charleston area said otherwise. The authorities and scientists tasked with monitoring the presence of crude MCHM based their safety determination on levels of the chemical dropping below methodological and instrumental detection limits. As the concentration dropped, crude MCHM proved ghostlike: detected by many human bodies, but invisible to the officially recognized scientific, instrumental methods of detection. The water is safe, official discourse said. Yet bodies throughout Kanawha County disagreed, appearing in the emergency rooms with rashes and headaches in the early days of flushing. Noses continued to identify the “licorice” smell for weeks after the crisis was declared over. “It was maybe two months before [we] stopped detecting it coming out of the spigot,” one interlocutor told me.
Before January 9th, the exact smell of crude MCHM did not matter. However, as the odor continued to persist despite its apparent absence as measured by instrumentation, it became apparent that the methodologies put in place for detecting and responding to sense-able chemical contamination were inadequate. Instrumental insensibility undermined and negated experiences of bodily sensibility, and in the process pitted individuals against the authoritative agencies ostensibly there to protect them.
These moments where instrumental insensibility collide with bodily sensing call for methodological approaches that can capture the rich detail of individual experiences, while also acknowledging the unevenness of the sensory world. Although the sciences dedicated to mapping the sensory world seek subjects that fit within a sensory norm by screening for ability to taste or smell, by its very nature sensing is difficult to quantify: even the ideal sensing body changes, gets sick, is injured, or carries genes that make cilantro taste like soap or inhibit the detection of bitterness. As such, the uneven nature of sensing complicates large-scale efforts to make sensory knowledge universally available, even as sensory scientists and researchers attempt to quantify and standardize sensory knowledge. Translation devices for bridging between individual and group sensory experience abound—from printed tasting guides to professional tasting classes—all united by the goal of allowing the specifics of an individual’s sensory experience to be broadened through creation of a shared sensory vocabulary. Authorities in West Virginia turned to sensory science to try to grasp the exact sensory nature of crude MCHM and determine whether continuing reports of licorice-like odors had merit.
Yet contemporary practices of sensory analysis remove individuals from the very environments that stimulate the senses in the first place (c.f. Howes 2015; Lahne Forthcoming). Sensory science seeks test subjects who fit an objective, laboratory-based model of ideal tasters. Participants are screened for ability to smell or taste, and those who cannot are excluded. It is notable that the standardized sensory science approach eventually justified citizen claims that crude MCHM was still present despite instrumental measurements that said otherwise (McGuire, Suffet and Rosen 2014). In accordance with the scientific demands of contemporary sensory science, the consumers selected to characterize the sensory experience of smelling crude MCHM diluted in water had no knowledge of the contexts in which sensing crude MCHM had—or might—occur. While these practices are useful for the deconstruction and reconstruction of flavors at the heart of industrial taste-making, and also provide critical information about how the human body can or cannot detect odors or tastes, they fail to account for the ways that sensory information is embedded in lived context. In the case of the West Virginia crisis, inhabitants did not encounter the smell of crude MCHM in the anonymous confines of a lab. They encountered it in their homes, churches, and workplaces, and they further developed and solidified how they sensorially understood the chemical through conversations with each other and media attention.
To restate this in more familiar terms, if we were together in the same room instead of separated by time and distance, I could hand you my favorite black licorice or hold out a sample of Viktor & Rolfe’s Flowerbomb perfume for you to sniff. We could taste and smell these things and imagine ourselves in the valley surrounding Charleston on a cold, early January day waiting in line to receive water from the National Guard. We could even suspend our smelly substitutes for crude MCHM into hot water and spray the mixture into the air in the bathroom, envisioning ourselves sensing an unwanted chemical intruder in our home as we follow the steps for flushing provided by the water supplier. Despite these efforts, neither of us could comprehend the experience of those in Charleston during the days and weeks and even months following the spill. Our outsider bodies do not carry the greenhouse manager’s memory of watching massive fish die-offs in the Elk River as a child, or of the woman learning to watch the flames at the chemical plants to determine whether one should feel safe or worried. Our bodies do not know the fear or discomfort of a mother smelling crude MCHM in the water as she weighs the government’s claims to safety against her nose’s warning of danger as she debates giving the water to her daughter. Our bodies have not become attuned to the chemical’s presence. As West Virginia Public Broadcasting’s Scott Finn noted in late February 2014, “After state officials finally stopped the MCHM from entering the water supply, after they told us to flush our pipes, you could still smell it in the water for weeks. I would engage in a nervous ritual: run the tap, lean in a little and sniff three times—and there it would be.” As such, the resulting knowledge of crude MCHM’s sensory characteristics generated by the scientific studies failed to capture the cultural or environmental aspects so critical to the experience of West Virginians.
Sensory science’s inability to capture the cultural and environmental aspects of sensing also threatens the ethnographer of sensory experience. As Nicholas Shapiro recently noted of his own sensorial experience interviewing people exposed to formaldehyde in their homes, the ethnographer’s sensory exposure may “intimate the costs of apprehending chemical others” while nonetheless remaining ephemeral due to the researcher’s ability to enter and exit the field (2015, 371). Examining the sensory offers a continual conundrum: how can the ethnographer effectively participate, observe, and make meaning of their interlocutors’ sensory experiences given the limits imposed by each individual’s accumulated sensory knowledge and the ethnographers own sensory naiveté?
It is precisely thinking in cases that opens a path through the thick forest of accumulated sensory knowledge. Thinking in cases prioritizes the unevenness of sensory experience, allowing the voices of those who sense and those who do not the possibility of participation. Thinking in cases resists the flattening of sensory knowledge for commercial purposes by bringing excluded voices back into the conversation. And perhaps most importantly, thinking in cases pushes the ethnographer to acknowledge the limits of participation and observation when it comes to embodied experience, opening the doors for new types and forms of interlocution.
 One of the crude MCHM-naïve panelists recruited to participate in the consumer panel assembled to estimate the odor threshold of the chemical described the odor as that of her favorite perfume, Flowerbomb.
Howes, David. 2015. The science of sensory evaluation: An ethnographic critique. In Social Life of Materials: Studies in Materials and Society, edited by Adam Drazin and Susanne Küchler. London, GBR: Bloomsbury.
Lahne, Jacob. Forthcoming. Sensory Science, the Food Industry and the Objectification of Taste. Anthropology of Food.
McGuire, Michael, I.H. Suffet, Jeffrey Rosen. 2014. Consumer panel estimates of odor threshold for crude 4-methylcyclohexanemethanol. Journal AWWA October 106, 10: E445-E458.
Shapiro, Nicholas. 2015. Attuning to the Chemosphere: Domestic Formaldehyde, Bodily Reasoning, and the Chemical Sublime. Cultural Anthropology 30, 3: 368-393.
Christy Spackman is the Hixon-Riggs Early Career Fellow in Science and Technology Studies at Harvey Mudd College, and a graduate of New York University’s Department of Nutrition, Food Studies and Public Health. Her research examines how the sensory experiences of making, consuming, and disposing of food influence and are influenced by “technologies of taste,” her term for the oft-overlooked technologies and practices used to manage the sensory aspects of foods during production.
In June, we debuted an extensive new series on Somatosphere, The Ethnographic Case. Edited by Emily Yates-Doerr and Christine Labuski, the series is organized on an expanding, virtual bookCASE, with each individual piece expanding our understanding of case studies — what they are, what they can teach us, and what work they do shaping both our objects of study and our academic fields.
“The expository medical case, attentive to the unusual and particular, has long been used as a tool for both diagnosis and instruction. The psychoanalytic case is built from fragments of remembered details with therapeutic objectives. The legal case establishes a precedent, while the criminal case comes to the detective as a mystery to be solved. The ethnographic case may be all of these things at once: instructing, dis/proving, establishing, evoking. It may achieve different ends altogether.
“We make a case for our field and our fieldsites through the use of ethnographic cases. Often told in the form of a story, the case can be an illustrative representation. It can also be an exception that draws attention to a rule. It can bring into exquisite detail a micro that is situated, like the tiniest of matryoshka dolls, within a macro. At other times it destabilizes these nested hierarchies, showing that what is big is (also) small, or that significant power resides in that which may be very hard to see. The ethnographic case can interrupt the networked connections of any cybernetic system by attending not to a whole (and not even to its capillary endpoints) but to the details of a situation that is at once expansive and immediate. Though explicitly incidental, cases distinguish themselves from other short forms of narrative by way of the expertise they invoke. Solving, learning from, or interpreting the case requires a level of engagement that presumes both knowledge and curiosity, the proficient habitus that makes improvisation possible. Interpretive expertise, in other words, transforms the extemporaneous into the routine, the anecdote into the lesson. Case closed. Or is it?” —Emily Yates-Doerr and Christine Labuski
“A case carries knowledge, not in the form of firm rules or statistically salient regularities, but in the form of a story about an occurrence that, even though it may have happened just once, is still telling, indicative, suggestive. It condenses expertise that is not general, but inspirational. As cases are idiosyncratic, those who seek inspiration from them still have to think for themselves. They have to adapt the lessons learned to the situation in which they find themselves.
“Cases, then, do not transport knowledge smoothly. It requires work to draw on them. The implications here of a case that occurred elsewhere have to be carefully thought through and tinkered with.” —Annemarie Mol
Anna Harris Body Topology
“When students take their own body as a case they are learning not from a pickled body part or cadaver, nor from written descriptions of symptoms and signs, but from their living, breathing body that creaks and pulses and moves. There is a sense of delight and discovery as students learn to listen to their heartbeats through stethoscopes, when they discover hollow and dull spaces in their abdomen and chests. Through this self-listening students are experimenting with their bodies, learning through the sensations they experience and bring about with their own bodily practices.” —Anna Harris
“We present the Mohegan Sun as a case that troubles distinctions between representational and immersive environments. Writing a case study such as this encourages us to rethink the boundaries between public casino spaces and more traditional exhibition spaces, to recognize them as a continuum. This kind of writing permits a kind of ‘sense engagement’ with the text, at once immersive and representational, drawing you into a story intended to feel expansive, but which remains carefully bounded. The surrounds of Uncasville and local histories bump against each other, the expectations of non-Native visitors looking for Native markers against a backdrop of the imagined Native mundane, and local uses of Mohegan stories and place- and way-finding practices. While the building holds the mimetic experiences of its interior—the dry-stone walls and trees and bark panels, for example, or its never-changing seasons—it acts as reflective container and embodied story at once.” —Melissa Biggs and John Bodinger de Uriarte
“In February, 2015, we joined a group of TDF volunteers in training to help out at the first autism-friendly Broadway performance of the play adaptation of Roald Dahl’s classic children’s book, Matilda, a hit about a preternaturally smart and second-sighted girl who saves herself and her beloved school teacher by unmasking and banishing the bully who runs their school, while also saving herself from a family that has no appreciation of her talents…Children and adults with autism have often felt excluded from Broadway theaters, and TDF’s ATI set out to remedy these structural barriers. Working with actors, directors, and the large support staff of ushers, salespersons, and attendants, ATI negotiated changes in lighting, sound levels, and audience expectations: the professional staff were taught to expect a different level of noise and movement in Matilda audiences when people with autism were welcomed into the Schubert Theater.” —Faye Ginsburg and Rayna Rapp
“This purportedly universal biomedical description — ‘biomedical’ in that it focuses exclusively on the bodily causes of disease, pathophysiology — belies its origins in specific studies with distinct populations, and erases a potentially heterogeneous set of “biomedical” practices and definitions. This fairly standard description has a wide circulation, and helps many clinicians — in and beyond North America — to identify cases and treatments. I interviewed a doctor in Huehuetenango who repeated this medical definition nearly verbatim. However, this authoritative description elides the experiences and meanings associated with derrame in the rural department of Huehuetenango where I worked. Most cases that I encountered corresponded with intense frustration and emotional trauma, although there were several cases that corresponded with unexpected and uncontained alegria (usually translated as joy or happiness).” —Nicholas Copeland
Are you a regular reader of Somatosphere who would you like to help us make the site even better? Are there certain topics or issues that you’d like to see more coverage of — or certain types of posts that you’d like to see more of (or less of) on the site? Do you have ideas about how the site should be developing and growing? If so, that’s great, because over the next two weeks we will be conducting a survey of our readers, which will give you an opportunity to air your opinions about Somatosphere, and provide us with important information about our readership. Please follow this link to take the survey or just use the embedded version below.
As an added inducement, you’ll have the opportunity to enter a drawing to win one of two prizes: a $75 Powell’s bookshop gift certificate or a copy of “the Canguilhem bundle” (The Normal and the Pathological; Writings on Medicine; Knowledge of Life)! Who wouldn’t want that?
Take the Somatosphere Readership Survey here:
When Research Bleeds into Real Life: Studying Reproductive Ageing while Ageing Reproductively by Carrie Friese
In a book chapter addressing feminist research methods and women’s health and healing, Rayna Rapp (1999) wrote about the complicated ways in which everyday life is embroiled in feminist research methods. She was speaking about how her own experience with amniocentesis was situated in her now canonical, multi-sited ethnography of this technology, and the corresponding challenges that arise when doing research ‘at home.’ But in recently re-reading this chapter, I have been wondering what happens when feminist research bleeds into everyday life? In this entry for Somatosphere, I want to discuss the complicated ways in which personal experience, combined with time and corresponding social changes, can extend, reshape, and further nuance findings from a research project long considered complete. This extends questions about doing research regarding biomedicine at home, when ‘everything is data’ in a feminist research project that turns out to be everywhere.
While doing my PhD at UCSF, I was a research assistant from 2001-2005 on an NIH funded project that explored couple’s experiences using donor egg and donor sperm. The research was focused on heterosexual couple’s thoughts about and experiences with disclosing this information to their resulting child(ren). Using ethnographic interviews, this disclosure decision was situated in people’s experiences with infertility more generally. Most of the couples I interviewed had used donor egg to conceive their child(ren) in the context of age-related infertility. I went on to write two articles about women’s experiences with reproductive ageing (Friese, Becker, & Nachtigall, 2006, 2008).
What struck me about women’s narratives at that time was the way in which ‘lack of knowledge’ and ‘lack of culpability’ were intertwined in women’s discussions of their infertility, and their subsequent use of donor egg. Specifically, almost all of the women I spoke with had believed that menopause marked the end of their fertile years. The idea that eggs age was surprising to the women in this study, and indeed was experienced as alarming given that ‘old eggs’ shortened their reproductive capacity. In addition, many women I spoke with perceived blame from others for their infertility. The women I interviewed would often use their lack of knowledge as a means to justify their decision to postpone having children, and thereby ward off the idea that they were somehow culpable and thereby less deserving (Friese, et al., 2006).
In this context, I have not been surprised to watch the ways in which reproductive scientists have responded to women’s experiences with reproductive ageing. First, the focus has been to educate women about the ‘fact’ of ‘diminished ovarian reserve’ in the hope that this would change women’s behavior. While working on this research project, the American Society for Reproductive Medicine was rolling out its first campaign educating women about age-related infertility. When I moved to the UK, I was invited to respond to a talk given by two clinicians, who were similarly focused on educating young women about the biological problems that arise in the context of delayed parenthood. Here I have sought to emphasize that the women I interviewed did not only point to lack of knowledge as a problem. Many would intertwine this narrative with another, one that also emphasized the personal, social, and structural factors that caused them to delay childbearing in the first place, including not meeting a partner until they were older and not wanting to be a single parent, not being financially secure, being focused on other things such as their career, being in a career that made having a child difficult, and/or not feeling ready to parent until reaching an older age (Friese, et al., 2008).
In contrast to the women I interviewed in the early 2000s, today many people are well aware that eggs age, and that female reproductive capacity in general declines after 35. In stark contrast to the narratives I heard from women who had used donor egg in the 1990s, Sarah Franklin (2013: 223-224) writes that for “the post-IVF generation of young women born in the 1980s, and now entering their thirties, both ART and fertility anxiety are now facts of life — as familiar as YouTube or Facebook. It is as if their biological clock is not so much ticking toward offspring as toward a newly-routinized technological encounter.” Indeed, because knowledge does not change the social and structural reasons for delayed parenthood, egg freezing has become a much-discussed technological solution. And while I would personally prefer to see adequate parental leave as well as high-quality, low-cost child care as social solutions, I appreciate that some women with sufficient financial resources would like the opportunity to freeze their eggs so that they can increase the chance of reproducing at a later age.
But while I have continued to give occasional talks or interviews on the topic of diminished ovarian reserve and donor egg, and have looked on with interest to the current discussions surrounding egg freezing, I have nonetheless viewed my research on age-related infertility as complete, a topic that I had started and finished exploring in my twenties. I have moved on to other topics, including the use of reproductive technologies in zoos (Friese, 2013a) and more recently to the reproductive work involved in providing care to animals in laboratory science (Friese, 2013b). However, the idea that I was ‘finished’ with reproductive ageing began to change as I was labelled with diminished ovarian reserve myself. However, I have not entirely experienced this label as either my study informants had or as Sarah Franklin describes the post-IVF generation of young women. And as my research has bled into real life, I have found my real life bleeding back into research.
In my mid-thirties, my partner and I decided to start the process of having a child as a lesbian couple. My previous research became a resource for us in this context, something that we could draw on as consumers of biomedicine. My partner and I were well aware of our relatively privileged position within the processes of biomedicalization (Clarke, Mamo, Fosket, Fishman, & Shim, 2007; Clarke, Shim, Mamo, Fosket, & Fishman, 2003), in that we were well-educated, relatively financially secure and able to navigate the privatization of the NHS. On the other hand, we also encountered homophobia in the NHS, in that we had to privately pay for assisted conception through a NHS clinic because the council within which we lived did not pay for lesbians to use reproductive technologies (Priddle, 2015 early online). We did question if we should go through biomedicine in order to have a child at all in this context. We knew full well that we were engaging in our own medicalization (Mamo, 2007), and this meant having our bodies treated in ways that we absolutely did not want in certain instances. [i] But living in the UK as US citizens, we ultimately decided that it was pragmatic (Lock & Kaufert, 1998) to have the law built into our conception story (Nordqvist, 2011). Social science scholarship provided a way to make informed decisions; the literature provided footnotes to the broader social, political, economic, and structural processes that were shaping our lives. But our experience did not make me rethink my research on assisted conception; I remained a knowledge consumer.
After my partner and I had, between the two of us, gone through six failed cycles of intrauterine inseminations (IUIs), our doctor told us that there was a clinical trial of in vitro fertilization (IVF) and, if we wanted, they could enroll me. The study was comparing how women aged 35-38 respond to two different drug protocols. I said yes, and was frankly thrilled to have a free round of IVF. We started on the next round of tests, according to the needs of the clinical trial. My follicle stimulating hormone (FSH) had to be tested again, and this time was very high — so high that I ultimately could not be enrolled in the clinical trial. More tests followed, and I was finally diagnosed with diminished ovarian reserve.
I have to admit that it was strange to be diagnosed with diminished ovarian reserve after having spent my twenties studying this label. At first my research continued to be a resource for me. I felt a sense of comradery with the women I had interviewed a decade ago, as some people blamed me for having diminished ovarian reserve and questioned my ‘true’ desire to parent. But there were also moments when I felt my own experience with age-related infertility was leading me to think in new ways about the topic itself, extending rather than consuming my previous research. For example, despite knowing everything that I knew about diminished ovarian reserve, I still could say that I honestly would not have done anything differently. My partner and I started to try to have a child when we felt ready in our lives to do so, and when we felt financially secure. Like some of the people I had interviewed, you could say that we are ‘late bloomers’ and so were just ready to parent a bit later than others. I did not need ‘lack of knowledge’ to ward off the comments of those who might blame me for delaying parenthood. There are a number of very good reasons for deciding to wait to have a child. All the knowledge in the world regarding diminished ovarian reserve did not change my behavior.
What also became clear to me, in being both a student and user of IVF, is the extent to which IVF has become a model of female reproductive ageing. It is not only that menopause has been displaced by eggs as an indicator of female reproductive ageing (Friese, et al., 2006). In the process, likely and actual ‘response’ to IVF is itself a key indicator of female reproductive ageing. FSH and now anti-müllerian hormone (AMH) are used to not only assess ovarian reserve, but possibly more importantly to estimate how likely a person is to respond well to the IVF process (e.g., are they likely produce a large number of eggs that can be collected).
Reproductive ageing is thus an instance in what Sarah Franklin has theorized as ‘biological relatives,’ a theoretical platform that denotes the normalization of IVF, the kinds of biological relatives IVF makes, and the ways in which biology becomes relative in the process. Being after IVF is about a state of being that is modelled upon artifice according to Franklin, wherein there are ‘evolving’ biological and technological relativities as the two become increasingly isomorphic. Female reproductive ageing exemplifies these biological relativities, as the biology of reproductive ageing is modelled upon the procedures of IVF. It is only within this context that I, for example, could be diagnosed as having diminished ovarian reserve after having only ‘tried to conceive’ for two months (e.g. having had two IUIs).
I foresee this expanding, such that hormonal counts could ultimately displace age as an indicator of female reproductive capacity. There are problems with using age as a proxy for female reproductive ageing because of that fact that a) this correlation has largely been produced with IVF patients who are a select sub-group and b) reproductive ageing as a process differs significantly across women. These problems are resulting in a backlash against all the information that is now available about age-related infertility. Just today, for example, I read a newspaper article in which a woman, recounting her road to parenthood, stated that she felt pressured to start trying to have a child as she neared 35. However, she goes on to state that all the information about women’s reproductive ageing is simply ‘not true.’
My own experience exemplifies these dilemmas. On the one hand, I demonstrate the truth of the idea of diminished ovarian reserve, as my FSH went up significantly during my 36th year. However, my partner — who is older than me — had a lower FSH and so, in the end, we used her eggs to create embryos with donor sperm using IVF. The embryos were then transferred to me, and I gave birth to our daughter in 2014. In general, it seems that ovarian reserve declines after 35, but this differs significantly across women. As Sarah Franklin (2013:224) notes “fertility has always been biologically relative.”
But while I have worries about the conflation of age and infertility, I also have worries about its complete rejection, as seen in the newspaper article mentioned above. While I was interviewing women about their experiences with donor egg, some discussed their disclosure decision as in part motivated by their own lack of knowledge regarding age-related infertility. Specifically, they felt the need to disclose their use of donor egg not only to their child(ren) but also to other women. They did not want to reinforce the idea that one could to wait until their 40s and expect to have a child easily.
Possibly because of my research background, and possibly because I have recently had a child, I find many younger women in academia asking me when is the best time to have a child. It is an impossible question to answer because there is never a ‘right time.’ So I tell these women that I had my child at a great time in my life and my career, but entirely by luck. My book came out and I was promoted from lecturer to associate professor during my third trimester. The article based on the pilot study for my subsequent research project was published at about the same time, and I found out that I had received the research bid to continue this research four weeks after my daughter was born. I was extremely lucky to be able to enjoy a generous maternity leave, and return to work with funding for my next research project. But while this timing couldn’t have been more ideal, it was also to some degree dumb luck. My partner and I had been ‘trying’ for over two years before I had gotten pregnant. I had been diagnosed with diminished ovarian reserve, and so I was lucky that — being a lesbian — my partner could, technically speaking, also be my ‘egg donor.’ And because of my and my partner’s age, it is very likely that we will not be able to have a second child. Like the women I had interviewed, I have had to narrate my identity as an academic mother as a “technological achievement” (Franklin, 2013: 229).
Rayna Rapp noted that as she began to engage in a multi-sited ethnography of amniocentesis, she had to move beyond what she had identified as her experience with it. In my case, personal experience with age-related infertility has made me revisit and rethink the topic of diminished ovarian reserve, a topic that I thought I had finished studying years ago. In this context, it is worth pointing out that Rapp’s chapter appeared in a book edited by Adele Clarke and Virginia Olesen (1999), which sought to ‘revision’ women, health and healing in the context of biomedicalization.
Fourteen years later, Sarah Franklin’s book Biological Relatives (2013) addressed many of the challenges that Clarke and Olesen articulated, particularly the richness of feminist theory and the problems of viewing nature and culture in a bifurcated manner in the context of biomedicine. But where Clarke and Olesen emphasized vision, Franklin emphasizes practice specifically through the trope of ‘tool cultures.’ It seems to me critical to start looking at how IVF is retooling reproductive ageing. I would like to see social studies of reproduction explore this retooling across clinics, women’s lives, families, popular media representations, and workplaces, but also back into the laboratory, where animal reproductive lives are also very likely being retooled as well.
[i] It is true that the women’s health movement has improved some women’s experiences within medicine. But it is also true that ‘inappropriate objectifications’ (Thompson [Cussins], 1996) of women in the ontological choreographies of biomedicine persist. The trauma of these objectifications is currently being articulated with American Childbirth: Exposing the Silence.
Clarke, A. E., Mamo, L., Fosket, J. R., Fishman, J., & Shim, J. (Eds.). (2007). Biomedicalization: Technoscience, Health and Illness in the U.S. Durham, NC: Duke University Press.
Clarke, A. E., & Olesen, V. L. (Eds.). (1999). Revisioning Women, Health, and Healing: Feminist, Cultural, and Technoscience Perspectives. New York: Routledge.
Clarke, A. E., Shim, J. K., Mamo, L., Fosket, J. R., & Fishman, J. R. (2003). Biomedicalization: Technoscientific transformations of health, illness, and U.S. biomedicine. American Sociological Review, 68, 161-194.
Franklin, S. (2013). Biological Relatives: IVF, Stem Cells, and the Future of Kinship. Durham, NC: Duke.
Friese, C. (2013a). Cloning Wild Life: Zoos, Captivity and the Future of Endangered Animals. New York: New York University Press.
Friese, C. (2013b). Realizing potential in translational medicine: The uncanny emergence of care as science. Current Anthropology, 54(S7), S129-138.
Friese, C., Becker, G., & Nachtigall, R. (2006). Rethinking the biological clock: eleventh hour moms, miracle moms, and meanings of age-related infertility. Social Science & Medicine, 63(6), 1550-1560.
Friese, C., Becker, G., & Nachtigall, R. (2008). Older motherhood and the changing life course in the era of assisted reproductive technologies. Journal of Aging Studies, 22(1), 65-73.
Lock, M., & Kaufert, P. A. (Eds.). (1998). Pragmatic women and body politics. Cambridge: Cambridge University.
Mamo, L. ( 2007). Queering Reproduction: Achieving Pregnancy in the Age of Technoscience. Durham, NC: Duke University Press.
Nordqvist, P. (2011). ‘Dealing with sperm': Comparing lesbians’ clinical and non-clinical donor concpetion processes. Sociology of Health & Illness, 33(1), 114-129.
Priddle, H. (2015 early online). How well are lesbians treated in UK fertility clinics. Human Fertility.
Rapp, R. (1999). One new reproductive technology, multiple sites: How feminist methodology bleeds into everyday life. In A. E. Clarke & V. L. Olesen (Eds.), Revisioning Women, Health, and Healing: Feminist, Cultural, and Technoscience Perspectives (pp. 119-135). New York: Routledge.
Thompson [Cussins], C. (1996). Ontological Choreography: Agency through Objectification in Infertility Clinics. Social Studies of Science, 26(3), 575-610.
Carrie Friese is an Associate Professor in Sociology at the London School of Economics and Political Science. She works in medical sociology and science and technology studies, with a focus on reproduction across humans and animals. Her initial research in this area focused on the use of assisted reproductive technologies for human reproduction in the context of infertility, with a particular focus on ageing and motherhood. She then shifted the analytic gaze to explore the development of interspecies nuclear transfer (a.k.a. cloning) for endangered species preservation in zoos. Her book Cloning Wild Life (2013) asked how notions of nature are being innovated in and through this biotechnological development. She recently received a Wellcome Trust New Investigator Award for a new research project, entitled Care as Science: The Role of Animal Husbandry in Translational Medicine. This five-year project (2015-2019) uses quantitative and qualitative research methods in a field analysis of in vivo science and translational medicine within the UK. It asks why an increasing number of scientists understand quality animal care as a scientific priority in the current socio-historical moment. She has also written and taught workshops on situational analysis and grounded theory, and has a general interest in relational research methods.
This month’s “In the Journals…” brings us a body of articles discussing pregnancy, childbirth, nursing, female anatomy, substance abuse, and addiction, with a focus on risk, secrecy, stigma, and strategies of coping and self-preservation.
Critical Public Health
Matilda Hellman & Robin Room
The study inquires into popular myths on addiction in two countries: Finland and the USA. It provides evidence of the manners in which the typical media narratives incorporate basic value traits from their context of origin. We distinguish some main features in the narrative set-ups that support different solution repertoires for dealing with addiction. Belief and hope are crucial story elements associated with the US emphasis on group formation and local empowerment. The individual is assigned obligations and can be morally condemned. In the Finnish journalistic prose, there seems to be an inherent belief that the agenda-setting in itself will propel the question into the institutionalised welfare state solution machinery. The occurrence of a story resolution was customary in the US stories, whereas the Finnish stories were typically left pending. The evidence produced has implications for the ongoing debate regarding the mainstreaming of both definitions of and solutions to addiction problems.
Leia M. Minaker, Susan J. Elliott & Ann Clarke
The aim of this study was to explore experiences and coping strategies of low-income families affected by food allergies. Of particular interest were experiences of allergy-related stigma within the context of poverty stigma. A secondary objective was to offer suggestions for refining a conceptual model of disease stigma. In-depth interviews with 23 individuals (10 key informants and 13 low-income adults affected by food allergies in southwestern Ontario, Canada) were conducted in 2012–2013. Participants reported feeling forced to adopt income-related stigmatized behaviors to obtain food and perceived difficulty in obtaining medication. Participants adopted cognitive distancing strategies to separate themselves from other low-income families affected by food allergies. Key informants frequently perceived low-income allergic individuals to be less vigilant than higher income individuals and attributed higher rates of allergy among higher income individuals to fewer unhygienic exposures and infections in early childhood. Both low-income participants and key informants perceived that inadequate education was a barrier to allergy management: key informants perceived a lack of education as an individual-level failure, while low-income participants perceived the lack of education as a system-level failure. Our findings revealed intersections between allergy stigma and poverty stigma. Results can be used to suggest additions to a conceptual model of disease stigma. Differing perspectives between key informants and low-income individuals have implications for strategies to improve access to education, safe food, and medication for low-income families affected by food allergies.
Health, Risk & Society
Emily Jane Ross
Withholding news of a pregnancy from wider family and friends for the first 12 weeks of gestation is a familiar aspect of the contemporary experience of pregnancy in Britain. In this article, I explore this convention, drawing on interviews conducted in Scotland between 2012 and 2013, with 15 women experiencing a full-term pregnancy for the first time. For the participants in this research, the maintenance of secrecy was a response to their understanding that the risk of a pregnancy loss was at its highest during this stage of gestation. Respondents often articulated their interpretation of this risk in terms of statistics, derived from medical sources. These were substantiated by knowledge of pregnancy losses amongst family and friends, but also by their own ambiguous embodied experiences at this time. Accounts of early gestation resonated with Rothman’s notion of the ‘tentative pregnancy’, a concept rarely invoked outside discussions of prenatal testing. In line with efforts not to get ‘too excited’, demonstrating emotion work, women delayed the announcement of their pregnancy until they perceived the risk of a pregnancy loss to have decreased. During the first 12 weeks of gestation, participants’ accounts demonstrated multiple influences on their understanding of their pregnancy as at risk. Further, their experiences more often resonated with the management of uncertainty than risk per se, and thus offer new perspectives to the study of pregnancy within the social sciences.
Western medical approaches to childbirth typically locate risk in women’s bodies, making it axiomatic that ‘good’ maternity care is associated with medically trained attendants. This logic has been extrapolated to developing societies, like Vanuatu, an Island state in the Pacific, struggling to provide good maternity care in line with the World Health Organization’s Millennium Development Goals. These goals include the reduction of maternal mortality by two-thirds by 2015, but Vanuatu must overcome challenging hurdles – medical, social and environmental – to achieve this goal. Vanuatu is a hybridised society: one where the pre-modern and modern coincide in parallel institutions, processes and practices. In 2010, I undertook an inductive study of 30 respondents from four main subcultures – women living in outer rural communities with limited access to Western-trained health workers; women from inner urban communities with ease of access to medical clinics; traditional birth attendants who are formally untrained but highly specialised and practised mainly in remote communities; and Western-trained medical clinicians (obstetricians and midwives). I invited all the participants to comment on what constituted a ‘good birth’. In this article, I show that participants interpreted this variously according to how they believed the uncertainties of childbirth could be managed. Objectivist approaches that define risk as an objective reality amenable to quantifiable measurement are thus rendered inadequate. Interpretivist approaches better explain the reality that social actors not only find risk in different sites but gravitate towards different practices, discourses and individuals they can trust especially those with whom they feel a strong sense of community. Strategies are, therefore, formed less through scientific rationality but according to feelings and emotions and the lived experience. The concept of risk cultures conveys this complexity; they are formed around values rather than calculable rationalities. Risk cultures form self-reflexively to manage contingent circumstances.
Health & Place
Crystal Gibson, Lauren Perley, Jonathan Bailey, Russell Barbour & Trace Kershaw
Social network and area level characteristics have been linked to substance use. We used snowball sampling to recruit 90 predominantly African American emerging adult men who provided typical locations visited (n=510). We used generalized estimating equations to examine social network and area level predictors of substance use. Lower social network quality was associated with days of marijuana use (B=−0.0037, p<0.0001) and problem alcohol use (B=−0.0050, p=0.0181). The influence of area characteristics on substance use differed between risky and non-risky spaces. Peer and area influences are important for substance use among men, and may differ for high and low risk places.
Ryan McNeil, Hannah Cooper, Will Small & Thomas Kerr
Area restrictions prohibiting people from entering drug scenes or areas where they were arrested are a common socio-legal mechanism employed to regulate the spatial practices of people who use drugs (PWUD). To explore how socio-spatial patterns stemming from area restrictions shape risk, harm, and health care access, qualitative interviews and mapping exercises were conducted with 24 PWUD with area restrictions in Vancouver, Canada. Area restrictions disrupted access to health and social resources (e.g., HIV care) concentrated in drug scenes, while territorial stigma prevented PWUD from accessing supports in other neighborhoods. Rather than preventing involvement in drug-related activities, area restrictions displaced these activities to other locations and increased vulnerability to diverse risks and harms (e.g., unsafe drug use practices, violence). Given the harms stemming from area restrictions there is an urgent need to reconsider this socio-legal strategy.
Journal of the History of Medicine and Allied Sciences
Susan P. Mattern
Starting perhaps in the second century BCE, and with Hippocratic precedent, ancient medical writers described a condition they called hysterike pnix or “uterine suffocation.” This paper argues that uterine suffocation was, in modern terms, a functional somatic syndrome characterized by chronic anxiety and panic attacks. Transcultural psychiatrists have identified and described a number of similar panic-type syndromes in modern populations, and a plausible theory of how they work has been advanced. These insights, applied to the ancient disease of hysterike pnix, demystify the condition and illuminate the experience of the women who suffered from it.
This article uses data drawn from the overseers’ accounts and supporting documentation in thirty-six parishes spread over four English counties, to answer three basic questions. First, what was the character, extent, structure, range of activities, and remuneration of the nursing labor force under the Old Poor Law between the late eighteenth century and the implementation of the New Poor Law in the 1830s? Second, were there regional and intra-regional differences in the scale and nature of spending on nursing care for the sick poor? Third, how might one explain such differences? The article suggests that nursing became an increasingly important category of spending for the poor law from the later eighteenth century, but that there were significant variations within and (particularly) between English counties in parochial attitudes toward the provision of nursing for the sick poor. These variations can be explained by applying a matrix of explanatory variables ranging from the minor (differences in how parishes defined “nursing”) through to the major (long-standing cultural attitudes toward the responsibility of parishioners to their sick compatriots and the ingrained expectations of the sick poor). The article also throws new light on the hidden aspects of female labor force participation, pointing to the development of professional nursing networks long before the later nineteenth century.
César E. Abadía-Barrero
Workers at the oldest maternity hospital in Colombia experienced the privatization of health care and the flexibilization of their labor. Drawing on their experience, I illustrate how neoliberalism transforms the value of life. This transformation occurs first in terms of its moral worth: the worth of life changes over time, as people and public hospitals are stigmatized as the ‘living memory’ of the old. Second, the hospital buildings, the land on which they sit, and the roles of workers within the hospital are all transformed. Both similarities and differences emerge between a type of systemic or chronic violence that is inherent to the capitalist system and modern practices of torture. Examining how capitalist forces transform the value of life opens up new fields of inquiry to study links between critical political economy and subjectivity.
Anatomy and cadavers trigger fear and produce contradictory responses. In these circumstances, allegedly Western models of learning and the exposure to death have to be appropriated to become viable. Furthermore, references to the religious and cultural backgrounds of students shape their responses. According to students, death is an event when the deceased acquires supernatural powers; thus, they take shield in religion to ward off potential dangers caused by spirits. The exposure to the interior of the body also produces heightened feelings of religiosity and perceiving the body as a miracle. Befriending skulls and body parts and giving them names are strategies to humanize dead bodies and render them familiar. However, in order to legitimize working with cadavers and the dissection of bodies, students tend to dehumanize cadavers and observe them as mechanical objects.
American feminist health activists in the 1970s created representations of genital anatomy intended to replace the abstracted images of biomedicine’s ‘modest witness,’ with what Michelle Murphy has called the ‘immodest witness,’ authority explicitly derived from personal and embodied experience. Decades later, a feminist publication in the tradition of the immodest witness called Femalia was adopted into the practice of an American surgeon specializing in trans- genital sex reassignment surgery (GSRS). Based on ethnographic and textual research, I show how oppositional claims to represent the ‘natural’ female body—one valued for its medical objectivity and the other for its feminist subjectivity—effectively foreclosed these as modes of authority through which the trans- patient might contribute to her surgical care. I argue that trans- patients’ double epistemological exclusion contributes to a broader asymmetry in the use of patients’ subjective reports in the everyday practice of GSRS and the clinical research by which it is evaluated.
Amanda Pavey, Narelle Warren, and Jacquelyn Allen-Collinson
People living with motor neuron disease (MND) experience profound and rapidly progressing impairment. In order to maintain their physical and social functioning, people so affected employ a range of technologies and technological aids (body auxiliaries) to enhance their life and maintain well-being. Using a phenomenological study design, we explored the experiences of 42 men and women who had been diagnosed with MND. Although many participants initially resisted the adoption of aids (often-electronic devices that enabled continued participation in daily life) or tools (the instruments that allowed achievement of specific tasks), such technologies offered a way for people with MND to overcome, to some extent, the limitations posed by their physical degeneration. Through generating a sense of ‘normality,’ these kinds of ‘enabling’ technologies promoted social engagement and the maintenance of valued relationships or activities. Technologies can provide people with MND with some positive experiences within a way of being-in-the-world that has become so difficult and challenging.
People living with a disability or illness and health care professionals often have different perspectives on what needs to be done, and why, in order to create a life they can recognize as good. Focusing on home modifications, I explore the enactment of diverging perspectives on the desired good. I show how one couple living with the effects of motor neuron disease in Wales tried to create a way of living. Drawing from a narrative-based study, I explore what happens when there is an interaction of different perspectives of what is considered to be a desirable outcome. I argue that the construction of some expectations as needs, and others as desires, serves to subjugate people to certain technologies. These technologies are those deemed necessary, following a neo-liberal language of cost-effectiveness where desires can be seen as liabilities.
Danish sperm donors face a particular kind of kinship trouble: they find themselves in a cultural and organizational context that offers different and contrary ways of how to make connections to donor-conceived individuals meaningful. Whereas Danish sperm banks and Danish law want sperm donors to regard these connections as contractual issues, the dominant kinship narrative in Denmark asks sperm donors to also consider them as family and kinship relations. Based on interviews with Danish sperm donors and participant observation at Danish sperm banks, I argue that Danish sperm donors make sense of connections to donor-conceived individuals as a particular kind of relatedness that cannot be reduced to either contractual or kinship relations. Making sense of these connections, sperm donors negotiate their social significance and thereby participate in opening a space which offers avenues for new kinds of sociality.
Medicine Anthropology Theory
In this article I seek to develop a conceptual framework for anthropological work on ‘the gut’ by bringing together reflections on ethnographic fieldwork on nutrition and well-being in KwaZulu-Natal, South Africa, with recent advances in the sciences of the gastroenterological and enteric nervous systems. While new evidence suggests that diet, immune system functioning, memory, and behaviour are shaped by the characteristics and processes of the enteric nervous system, it has also come into the public sphere as an object of intense disputation. Despite an ethnographic archive elaborating the diverse ways in which the gut contributes to well-being, it is still seen as a collection of folk systems incommensurable with scientific knowledge. I suggest that the mutual absorption of the natural and the social in the mediating membrane of the gut requires a more robust concept than either illness narrative or biosociality, and I ask: what would an anthropology of the gut look like?
Theoretical work in critical medical anthropology and biomedicine on substance use in pregnancy has yet to develop a cohesive framework of the maternal-fetal unit (MFU) as a dynamic object. As a result, patient history, risk, and agency continue to be driven by an Enlightenment-era, monolithic conception of individual will. I use the example of Carla, a young woman actively using heroin in her pregnancy, to illustrate the limits of the MFU as it is currently conceived. By using critiques of subjective utilitarianism, as discussed by Byron Good, and the concept of becoming, as elucidated by Gilles Deleuze and Félix Guattari, this article seeks to articulate an ethics of accompaniment, focused on both individual patient care and wider sociopolitical advocacy. These ethics help to redefine the MFU, and support new and unique ways of providing services to this often marginalized and vulnerable population.
Jens Seeberg and Lotte Meinert
This article argues that the concept of communicability that is central to the distinction between communicable diseases (CDs) and noncommunicable diseases (NCDs) is poorly conceptualized. The epidemic spread of NCDs such as diabetes, depression, and eating disorders demonstrates that they are communicable, even if they are not infectious. We need to more critically explore how they might be communicable in specific environments. All diseases with epidemic potential, we argue, should be assumed to be communicable in a broader sense, and that the underlying medical distinction between infectious and noninfectious diseases confuses our understanding of NCD epidemics when these categories are treated as synonymous with ‘communicable’ and ‘noncommunicable’ diseases, respectively. The dominant role accorded to the concept of ‘lifestyle’, with its focus on individual responsibility, is part of the problem, rather than the solution, and the labelling of some NCDs as ‘lifestyle diseases’ is misleading. Founded on a critical understanding of global health and globalized medicine, we propose to explore the dynamics of the phenomena of contamination and biosocial contagion in networks. An analytics of biosocial epidemics needs to be developed by a medical anthropology that is engaged in a critical dialogue with both medicine and biology.
Philosophy, Ethics and Humanities in Medicine
- Naguleswaran, T. Tribedi, J. Fenn, S.B. Patel & Peninsula College of Medicine and Dentistry
The inaugural southwest medical debate, between Exeter and Plymouth medical schools and respective health services, was held on the 3rd December 2014. Plymouth proposed the motion “This house believes the NHS should be privatised?” In an increasingly political climate, the National Health Service (NHS) has become a constant topic for discussion in the media. On this occasion, all those debating were involved in the medical profession with roles encompassing clinical medicine, education, ethics, economics and policy. By allowing those with knowledge of the NHS to speak, we hoped to spark novel discussions based on evidence and experience.
Conference review: MAGic 2015 Anthropology and Global Health: Interrogating Theory, Policy and Practice by Josien de Klerk
“Global Health is like a containership. The multiple actors —international and local NGOs, humanitarian organisations, scientists, activists, politicians — operate the tugboats, attempting to nudge, tug and pull the ship into its dock, where it will be offloaded and transported, i.e. implemented, by those who were able to demonstrate the greatest technical skill and advantage. […]As anthropologists, we must continue to engage in the Sisyphean task of trying to steer the Global Health container ship, but we should also not forget that we are on the ship, nor that it is often easier to shape both the trade routes and shipping manifesto before the ship gets under way.” –Eileen Moyer
This metaphor, brought forward by Eileen Moyer in a panel on containment organized by Alex Nading and Rebecca Marsland, is just one of the many creative proposals about the relationship between global health and medical anthropology that circulated at MAGic2015. The conference, jointly organized by the EASA Medical Anthropology Network and the RAI Medical Anthropology Committee, was held at Sussex University September 9-11. The MAGic conference aimed to interrogate the paradigms and practices of Global Health.
From Wednesday to Friday, opening keynote lectures were followed by six parallel panel sessions for a total of 52 panels and lunchtime events, including the Sussex Glocal Health Hive, the annual meeting of the EASA Medical Anthropology Network and a Wellcome trust presentation on funding opportunities. The conference drew 350 participants, of whom almost a third were young scholars working in Global Health. The third meeting of its kind — in 2011 the EASA medical anthropology network held a conference on the theme of medical pluralism in Rome and in 2013 EASA and SMA joined to discuss “Engagements and Encounters” in Tarragona — the conference again offered a rich platform for formal and informal debate, the start of new collaborations and initiatives, and the space for interdisciplinary engagements.
The sheer volume of panels, covering several consecutive timeslots, led to some excellent, intimate discussions, but the overlap also created difficult choices. I spent much of the conference wishing I could be in two places at once. Panel topics covered the wide array of anthropology’s involvement in Global Health, encompassing the ‘hot’ topics of 2014-2015: Ebola and migrants’ right to health, health inequalities, the role of ethnography in HIV randomized control trials and genetic medicine. Another conference theme included the politics of Global Health concerns like obesity, mental health, maternal health and reproduction, global aging, chronicity and disability. Global Health ‘culture’ was itself unpacked: panels focused on its networks, workers, qualitative methods, health indicators, politics and stakeholders, language and discourse, unintended consequences and study of objects, commodities and technologies. More creative and reflective panels used Global Health ‘memory,’ ‘post-Humanism,’ and ‘containment and materiality’ to move us beyond conventional anthropological thinking in and about Global Health.
So, what was the buzz? First of all, in a land of plenty and limited time there is always Twitter! MAGic’s hashtag (#MAGic2015conference) was used abundantly. Some tweets included:
— Elizabeth Mills (@EMills_IDS) September 10, 2015
— j m de lopez (@jennachiapas) September 10, 2015
— Anna Ruddock (@annalouruddock) September 9, 2015
Lesson2 #Magic2015conference. See health as between people not (just)within bodies.
— Bregje de Kok (@BregjedeKok) September 14, 2015
The Ebola response needs to go beyond the idea of the community to the community as lived locally #MAGic2015conference
— IDS Nutrition (@IDS_KSNutrition) September 9, 2015
— Alex Nading (@AlexNading) September 9, 2015
— Bregje de Kok (@BregjedeKok) September 14, 2015
— Rebecca Lynch (@r_j_lynch) September 11, 2015
— IrishMedAnthroNet (@IrishMedAnthro) September 10, 2015
Critique of RCTs Vinanne Adams asking: Are we operating under a new kind of sovereignty? #magic2015conference
— j m de lopez (@jennachiapas) September 11, 2015
My highlights included the panel on containers and the material life of Global Health, which focused on objects that interfere with the spread of disease or with diagnosis. To give you some examples: Alex Nading talked about improvised containers for the collection of shit in Nicaragua as part of a “crafted bureaucracy”, Mirko Pasquini discussed the glass barrier in Italy’s emergency rooms, and Eileen Moyer talked about the containers as black boxes transporting interventions, in this case “male involvement initiatives”, in HIV eradication.
Another personal highlight was the panel “Anthropology on trial? The role of ethnography in HIV experimental science”. Eva Vernooij described her alternating roles as coordinator and observer of a large Treatment as Prevention programme in Swaziland, Shelley Lees followed with a presentation on the challenges and possibilities for anthropological involvement in HIV and Ebola Virus Disease prevention risks, and Denielle Elliott presented a creative paper in which she publicly conversed with an epidemiologist who was the director of a HIV research project in a large state-run clinical research center in Kenya. It was fascinating to see the different roles medical anthropologists can assume when collaborating with global health workers. Whereas Eva Vernooij sought pathways to study the trial as a social and political intervention, she also changed the trial’s course through her engagement. Shelley Lees defined her position as an ally of the community, guarding ethics and thinking about how to improve the set-up of clinical trials. Denielle Elliott, on the other hand, took an overtly politically-engaged stance, critically analysing clinical trials as fundamentally exploitative but also highlighting the immense difficulties in communication between anthropologists and (willing) epidemiologists coming from divergent epistemological backgrounds.
The divergent engagements of anthropology with Global Health were also central in the plenaries and keynote lectures. In the first plenary, “Anthropology in the time of Ebola: anthropological insights in a Global Health emergence”, Sylvain Faye discussed the way “community participation” was framed by health authorities as resistance to government, rather than as a critique of government denial and its lack of recognition of local perspectives. Melissa Leach subsequently used anthropology’s engagement in the Ebola response as a way to discuss and overcome “tired distinctions” and reach new models for future responses to Global Health threats. The theme of anthropological engagements with/in/about Global Health was taken up in the keynote by Brigit Obrist on the “lures” and “perils” of engaged medical anthropology, where she urged anthropologists to continue to provide grounded community work questioning ‘best practice’ models. A wonderful keynote by Vincanne Adams focused on public-private-for-profit partnerships within the broader context of Global Health’s growing reliance on evidence-based metrics and its concerns for cost-effectiveness. She juxtaposed the global health community’s use of anecdote to legitimize their measures against the deep engagement of ethnographic storytelling.
The general buzz about anthropology’s engagement with Global Health seemed far away in my own panel, “Global Ageing: Towards a Shift From Cure to Care”, organised by Piet van Eeuwijk. The panel opened with a presentation by Jason Danely on caretakers for older people in Japan. He sketched the world of eldercare in Japan through vivid phrases: the “kidnappers” coming to round up older people early in the morning; the intimacy of care work, which in Japan is framed in similar categories as “hostess” work; and the constant manoeuvring of caretakers between the boundaries set by policy and feelings of responsibility for older clients. In doing so, the paper made an excellent case for closely examining caretaker vulnerability. Through rich case studies, Renske Visser, the next presenter, analysed implicit policy assumptions of what a “good death” entails in the United Kingdom and how elderly people’s wishes are not a stable entity but change in conversation with their physical ability. This formed a nice link to the paper I presented on how relations between grandparents and grandchildren in Tanzania change over time in the AIDS era. In my work “strength” and physical ability are central in the care work of raising grandchildren, but this plays out differently when children are infants, adolescents, or young adults. Also focusing on Tanzania, Piet van Eeuwijk continued the theme of strength when discussing the rise of diabetes among middle-class elderly people in Dar es Salaam and their difficulties in managing much-needed chronic care.
Thinking about the limited interest in aging at the conference — with only eight people present (including panel participants) our session was rather intimate — I could not help but wonder whether current trends in Global Health, including the focus on technology and measurable evidence that we anthropologists so like to critique, are not also a lure for medical anthropologists themselves. Aging, care, disability: totally unsexy. Technologies: sexy! Surely it is not just funding mechanisms or urgency that shape medical anthropology’s engagement with Global Health. Perhaps our own disciplinary interests are more influenced by what is in fashion than we would like to imagine. By the close of the conference I found myself asking: Isn’t it time to not just tug at and nudge around the edges of the Global Health field, but to embrace, unpack, and, particularly, transport the richness and broad scope with which we view our subjects and apply those lenses to our own practices in Global Health, as well?
Josien de Klerk is a lecturer in the Global Public Health major at Leiden University College, The Hague. She has worked extensively on aging in the era of AIDS in Kenya and Tanzania, studying informal care, including self-care of both affected and infected older people in rural and urban settings. Her fieldwork is the basis of critical analysis of the politics around aging and care in the treatment-dominated AIDS landscape in East-Africa. Her current research interests center around the consequences of social welfare policies, looking at the introduction of social pensions in East-Africa and the (im)mobility of Dutch pensioners in Spain in the context of increasing austerity measures.
It is Halloween again! This month’s web-roundup looks at fear and creepiness, why we feel them and, even more interesting, why we enjoy them.
Our brains are hardwired to feel fear, but it is nice to remember that we are hardly alone in this. We know that crows are very intelligent (and creepy!) animals, but thanks to a new study we now know that they feel fear and that they can learn from the death of other crows. Whenever one of their own dies, crows try to find out if there is a threat where the death occurred. If there is one, they will not only remember it for a long period of time (even if it is a human face!) but will also avoid it, and cry out to other crows to alert them about the danger.
As humans, we not only get scared but some things “creep us out”. But what is creepiness? Well, whenever we identify a dangerous situation, we get scared. But it seems that when we can’t tell for sure if we are in danger or not, we feel creeped out instead. In everyday life, people find it creepy when they are not able to predict how someone else will behave. This may explain why people who display unusual non-verbal behaviors or emotional reactions (think someone laughing at unpredictable times) make us uncomfortable.
Fear, creepiness, and death have fueled human imagining since ancient times. And this month, the web provided a great reminder of just how diverse we are when it comes to dealing with these in society. The New Yorker published an interesting article about vampires, literature, and fears in Victorian times, and Slate has a story on how fear is experienced and designed in Japan. Also, the Economist tells us about the meaning of Halloween and how it got transformed into the hugely popular celebration it is in the U.S. today.
Interestingly, despite the role that fear plays in allowing our survival, it turns out that we actually enjoy experiencing (some) fear. Many, many people seek out experiences of horror and creepiness. We enjoy scary movies, haunted houses, and bizarre stories like this one from 1923! More current examples are the new Norwegian fascination for ghost hunting, and the latest Airbnb’s rental offer in Paris allowing guests to stay at the city’s catacombs… which means spending the night with six million dead bodies. In case you were wondering, the rental includes a private concert and horror stories by a storyteller (!)
Also, did anyone know Halloween genes exist? They are the spook, spookier, phantom, and disembodied genes.
More links of interest:
Pregnant women’s bodies resist giving birth in Halloween – Sociological images
Trump’s Halloween mask in Mexico – Time magazine
The zombie grad student – PhD comics
Continuing our summer roundups, today we are highlighting a second set of essays from our Inhabitable Worlds series, brought to us by editors Michele Friedner and Emily Cohen. Inhabitable Worlds is a series that examines the theoretical tools and approaches that scholars bring to the study of disability in the social sciences and humanities.
“The above-mentioned strategic use of the certificates implies that governmental regulations as to whom is entitled to travel in the compartments often do not suffice and are sometimes overruled as the space is governed by the passengers themselves. In these train compartments assigned to disabled people, informal rules for use of space are created, reproduced and challenged. The diversity of the passenger body leads to the production of hierarchies when negotiating (and arguing about) who can enter the compartments and who can not, who can sit and who should stand, and where they should sit or stand (in the compartment or near the doors). These hierarchies are general but not overpowering directives with regard to entitlement to space in the compartments, produced by diverse commuters. There is a tension between formal and informal rules as the produced hierarchies are mediated, but not dominated by the power of medical and disability certificates.” —Annelies Kusters
“Living with an illness often conjures discourses of a losing battle and suffering. What is less evident in the literature is how people can live with an illness, rather than despite it. In this article I discuss certain practices that my mother and people around her mobilised in order to lead to what I have previously referred to as the good, or better, life (Sakellariou, 2015a). Practices of care involve the enabling of processes through which the person survives, both physically and metaphysically; in other words, they enable the creation of an inhabitable world… Here I tell a story about trying to create a way of eating by remaking what the meaning of eating and food are in acts of caretaking. I see this remaking as a form of creating an inhabitable world. By focusing on concrete practices of care, and describing, however incompletely, what an inhabitable world can look like, especially in relation to food, I aim to raise the importance of practices of care of the self and care of the other for medical anthropologists. I also aim to draw attention to the notions of function and ability, and discuss what it means to can or to cannot eat.” —Dikaios Sakellariou
“By choosing to use ecological theories to think about war contamination, I am making a claim about how war waste transforms social and material systems. Ecologies describe the complex relationships between entities and an environment over time. Ecological theories excel at describing the material conditions that enable relations and the multi-scale, long-term transformations of these systems. War contamination is already represented in ecological terms by clearance operators (i.e. hazardous areas, waste, contamination, latency, residual risk)…In Laos, what does this ecology look like? Though exact numbers are up for debate, the Lao government estimates that 25% of all villages are heavily impacted by explosive war wastes (National Regulatory Authority 2010). Villages in the most contaminated parts of Laos are often called bomb villages. I submit that they are not only bomb villages, but also bomb ecologies, or more specifically, cluster bomb ecologies. “ —Leah Zani
“It was Vakas who first led me to consider the digital as an object of study rather than a mode of communication while I was in the field. Because he speaks slowly, and with a degree of difficulty, he sometimes prefers to share information online. When I hadn’t known him for very long, one afternoon I asked him a question in a group environment, and he suggested that he would send me an explanation online, rather than try to give an answer verbally.
The digital option – messaging on VKontakte – offered a shortcut in what disability studies scholars call “crip time,” the elongated temporal frame in the performance of disability (Kuppers 2014; Hickman 2014). Crip time is an element of disability theory that is important for understanding the experience of technology in relation to disability or non-normative embodiments. Walking, talking, moving from one space to another, getting together with friends, or negotiating (in)accessible networks: all take on a particular temporality when one occupies a non-normative embodiment. To illustrate this contrast with cultural norms, as a quick way to winkingly let one another know what is at play, the anglophone disability studies community has come to call this non-normative temporality ‘crip time.’…The configuration of crip embodiment and digitally enabled social selves that my interlocutors describe is a unique configuration of technology, architectural infrastructure, and cultural and personal expectations of self-making. The social world-making that my interlocutors, including Vakas and Alina, engage in can be thought of as both a process and a state of pixelization.” —Cassandra Hartblay
“Media and other outputs…help construct a Down’s syndrome public in which new social imaginaries of human difference are erected and people who have Down’s syndrome, together with their parents, are (re)constructed as occupying ‘inhabitable worlds’, giving them a future as well as a meaningful present…This imaginary and formation of a Down’s syndrome public – enabling what Ginsburg and Rapp (2015) call an ‘existential repositioning’ – is in tension with the troubled relationship that the condition holds with prenatal technology. What I have shown here, to put it simply, is that there are two competing ways of enacting Down’s syndrome (at least in my own research and observations). Within the medical realm, where discourse shapes how people come to view and experience bodily difference, the condition is configured as a negative outcome. Among parents of those with Down’s syndrome, everyday life is constituted – despite a range of clear and complicated challenges – as celebratory, life-changing (for the better), and not the disaster it was initially believed to be…The existence of two orientations to Down’s syndrome, as outlined in this article, is undoubtedly a simplification of an immensely complex issue and I certainly do not mean to suggest that these are its only two orientations. However, they are two which have appeared in my own work. Thus, by troubling and dissecting the taken-for-granted category of one of the most common yet complex genetic conditions, we can see how ‘Down’s syndrome worlds’ can be made both inhabitable and uninhabitable.” —Gareth Thomas
In organizing the 6th Annual Conference of Comics and Medicine, I frequently heard the refrain “Comics and medicine? What’s that? How do those two things go together?” Indeed, I even heard that comment from the comic book store manager whom I had asked to sell selected books at the conference. The Graphic Medicine Manifesto (2015) is a brilliant response to this question. This collection of essays introduces us to the history, interdisciplinary frameworks and intersections, and vision for the growing fields of Graphic Medicine. In the introductory chapter we are treated to a comic with each of the authors’ avatars who introduce us to Graphic Medicine and the work of the contributors, MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith. As key figures in the Graphic Medicine community, these health practitioners, humanities scholars, and comics artists represent some of the diversity of thought engaging this field. In an innovative effort to include more voices from the greater Graphic Medicine community, the conclusion features avatars drawn by artists and scholars who also contribute to the conversation.
The Graphic Medicine Manifesto is an innovative collection of essays that chart the importance of comics as a field of research, guide us in how to read comics and their iconography, and ask how comics can be used in patient care and in medical education. Primarily situated in the Narrative Medicine conversation (Charon 2008), the essays argue that comics about illness, “pathographies,” generate multiple paths for achieving self-reflexivity and inclusivity. The practices of making and reading pathographies allow readers and creators to shift perspective, to see health, illness, and medical encounters from someone else’s perspective, and to know that there are people out there who share similar experiences of suffering. What is particularly important about the structure of the book and the individual essays is their inclusion of the individual author’s stories, their origin stories about how they came to read and enjoy comics, and then how they took them up as part of their scholarship. Each chapter ends with an interlude where the author shares portions of a comic that impacted their thinking. One could say that it is a moment of reflexive writing, but the goal is more than achieving reflexivity; it is based in a strong commitment for inclusion. Taking the disability studies motto as its lead — “nothing about us, without us” (p20) — inclusivity frames the purpose of their work.
Williams and Czerweic, in particular, consider how the combination of image + text in pathographies is creating a sense of serious play (for me this evoked Donna Haraway’s  notion of serious play) wherein individuals narrate and illustrate their knowledge and subjective experiences with an image that is not beholden to biomedical imagery. In an interview with the authors at the Comics and Medicine Conference, Squier and Williams discussed the term Graphic Medicine and the recent debate in Literature and Medicine over the term “medicine” as colonizing and a narrowing of how people experience health. Williams importantly noted that “Graphic Medicine is also a pun, …it’s not just about medicine as in medicine pertaining to doctors, but also medicine given on a spoon, a kind of curative for medicine.” The Graphic Medicine Manifesto, then, is an effort to transform the practice of medicine.
Kimberley Meyers’ chapter is particularly adept at examining the interplay between image + text through a discussion of how she incorporates comics into her teaching art and humanities classes for fourth-year medical students. In her course, “Reading and Writing the Patient,” she uses poetry, photography, and comics to engage medical students in ethical practices. Meyers notes that comics, more than the other artistic mediums, provide a productive intersection such that her students feel like they can understand and discuss the material offering both alternative perspectives and interpretive practices for the various images and text in the comic. The ability for medical students to engage multiple perspectives is critical for empathy, good communication, and creativity. Likewise, Green and Czerwiec note that when students themselves draw, the act forces them to slow down, to consider, reflect, and put details together — all skills needed in good patient care, diagnoses, and treatment.
A strength of the Manifesto is its descriptions of how authors have used comics in their teaching. Squier, Green, Myers, and Czerwiec all have detailed discussions of how they use pathographies in their teaching and how they engaged those students in drawing their own comics. With the exception of Squier’s chapter, the courses are designed for medical students. The descriptions of the courses and reasoning for why the authors engage the students in specific readings and drawing activities are thoroughly detailed and thus easily adaptable to any student level. The courses all include time for drawing, sharing, and discussion of student work. Green’s chapter provides examples of how students’ creation of comics facilitated more reflection and potential for reflective thinking. Czerwiec’s chapter is an invitation to draw; “The Crayon Revolution” allows us to return to that moment when we stopped drawing in fourth grade and were still using crayons. Drawing for Czerwiec is an antidote for what she calls “narrative constipation,” a condition that healthcare professionals experience wherein they are repeatedly witness to and hear difficult stories with no time for processing the emotions that come with that knowledge. Time and a method are needed to give voice to those stories. For those of us who don’t consider ourselves to be artistic, Squier’s chapter shows us how we can become learners and enhance the work of students when we draw with them. Ultimately teacher and student are transformed.
Intersections between Graphic Medicine and key issues in the current comics scholarship literature, as well as other interdisciplinary fields, are addressed in the chapters by Czerwiec, Williams, Smith, and Squier. Smith’s chapter is a review of comics scholarship and provides a grounding for researchers who want to research comics, showing how Graphic Medicine fits into that conversation. Williams’ chapter deals with the representational and iconographic details of making comics. It is a nuanced chapter that provides keen insight into the lives of comics artists and what it means to draw a story of your illness. Williams discusses comics as an embodied practice that, for comics artists drawing detailed, mundane, and intense moments of the illness narrative, access not just the descriptive language of the moment, but also pushes us to consider concerns about the artists’ embodiment. Czerwiec’s chapter provides citations for some of the research being done around comics, including studies that demonstrate the impact of comics on patient lives and on health systems. As comics play a greater role in understanding illness and medical encounters, this chapter sets the groundwork for future work in the area. I particularly appreciated Squier’s chapter for her thinking about the interdisciplinary conversations Graphic Medicine could have with fields outside of medicine such as disability studies, gender and sexuality studies, and science and technology studies. Overall this is an excellent interdisciplinary text that provides an engaging introduction into Graphic Medicine along with some points of departure, such as moving beyond focusing only on the doctor/patient relationship and into broad discussions of embodiment, representation, care and caregivers, and showing how drawing can enhance critical thinking and transform biomedical thinking.
As an anthropologist I am always asking myself how our discipline can contribute to this conversation. Anthropology has a long history of attending to narratives in general and illness narratives in particular (Kleinman 1989). Illness narratives allow for the inclusion of subjective experience of medical encounters and the context in which the encounters occur. So what is added by considering comics and comic-making not just as a medium to be analyzed for its representations? In what ways are the instantiated images of suffering more than an analytical object? The authors of the Manifesto argue that in slowing down to consider and draw the details of an encounter, emotion, or experience, comics enhance our visual language, enhance reflection, shift perspective, connect people through their stories during some of the most anguishing moments of life, and transform the practice of medicine. For anthropologists these ideas could take the form of embodiment, biosociality, or a host of theoretical concepts.
Moving beyond the linking of theory across conversations, we can return to the authors recurring point about inclusion. Notably, Smith mentions that the majority of collections written about comics — books that lay the groundwork for the historical and theoretical work in comics scholarship — were written by comics artists and enthusiasts. The critical conversations did not come from academics who viewed comics as analytical objects, but rather from the people who created and actively engaged the medium. Where does this critique come from in the humanities or social sciences? Can we use comics, the combination of text and image, to create opportunities for inclusion of other perspectives? The previous post in this blog series on the Image as Method Symposium offers some important insights on how to orient our thinking toward putting different things together. The Graphic Medicine Manifesto could be used to consider methodologies and collaborations that actually allow us to put in conversation diverse ways of seeing, speaking about, and experiencing bodily suffering. One of the contributions that anthropology could make to this conversation is by adding to the diversity of comics discourse. To return to Haraway’s thinking about serious play, these comics are both imagination and material reality and as such hold the possibility of transformation. Anthropology’s expertise in the study of power and the potential of the Otherwise (Povinelli 2011) could be marshaled into decentering by drawing the details of ethnographic observations, details of relations between people and objects, and narratives that are not offered in comic form. Anthropologists’ collaborations across the globe and in conditions where biomedicine is not the dominant method for care would greatly enhance the inclusivity that the Graphic Medicine community seeks to engage.
Charon, Rita. 2008. Narrative Medicine; Honoring the Stories of Illness. Oxford: Oxford University Press.
Haraway, Donna. 1991. A Cyborg Manifesto: Science, Technology and Socialist-Feminism In the Late Twentieth Century. In Simians, Cyborgs and Women: The Reinvention of Nature. New York: Routledge.
Kleinman, Arthur. 1989. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
Povinelli, Elizabeth. 2011. Economies of Abandonment: Social Belonging and Endurance in Late Liberalism. Durham: Duke University Press.
Juliet McMullin is an Associate Professor at the University of California, Riverside. Her work examines the intersections of knowledge production, political economy of health and community building. Her two ongoing projects include; an ethnography of the growing field of graphic medicine, the second is based on her earlier research and explores how to represent health inequalities in graphic narrative form. She can be reached via email at firstname.lastname@example.org
Advocates of a more robust democratic citizenship in Brazil often point bitterly to the frequent practice of cutting ahead of others in line. Such line-cutting, they lament, indicates a popular attachment to hierarchy and a disregard of one’s fellow citizens. Democratic citizenship, so this line of thought goes, inheres in one’s respect for the stranger’s time, body and life-world, a far cry from the degradation of poor people’s personhood within Brazil’s anonymous, metropolitan spaces (Caldeira 2000: 367-377). Waiting for services is thus “a privileged site for studying performances of citizenship” because it reveals popular dispositions toward the generic citizen’s rights and vulnerabilities (Holston 2008: 15).
I want to consider the possibility that waiting one’s turn in line, what we might call waiting democratically, brings with it the threat of disarticulation from those social relations that give value to particular lives. Reflecting on Brazilians’ invocations and subversions of egalitarian waiting opens a window into a mode of suffering that liberal institutions sometimes elicit, especially in a context of austerity. In what Javier Auyero calls the “patient model” of governance, the neoliberal state imposes long waits and thus “manipulates poor people’s time” to produce their docility (Auyero 2012: 157). Here I suggest that poor people who inhabit democracy face another form of suffering, one associated with the threat of being reduced to bare life as they anticipate the materialization of their rights.
The incident I take for my ethnographic case occurred in March of 2015 in the northeastern state of Piauí. There I witnessed an argument between two people waiting in line for curative consultation with a local spirit medium.
One party to the argument was “Dora,” a retired janitor in her late fifties, who had been suffering from knee pain for months. Dora frequently complained that she lacked the money for private doctors. She had debated accessing free services through Brazil’s “Unified Health System” (Sistema Única da Saúde, or SUS), but was wary. SUS healthcare is hampered by insufficient state investment throughout Brazil, especially in the rural Northeast. The one public hospital in Dora’s town was chronically understaffed by medical personnel, many of whom routinely ditched their posts to attend to wealthier patients in their private clinics. I had overheard Dora and her friends complaining about waiting in line for multiple days in the hot sun outside the public hospital. When she did go to that hospital, she returned complaining that the wait was insufferably long, that the visit “Didn’t do anything [for me],” and that “the doctor just looked at me quick and said to take [a non-prescription pain killer].”
I was glad to drive Dora to the remote home of a spiritual medium, “Medium João,” that March day. When we got there, we had to wait for two hours on the front porch behind a young man in his twenties, but the waiting area itself was quite congenial. It was a sort of garden with comfortable benches, palm trees for shade, and a pitcher of ice-water. Alongside these comforts was an ornate shrine to St. Sebastian, who is often syncretized with the African deity, Oxôssi, guardian of herbalists and physicians against evil spirits. The waiting area was also bedecked with peppers, cow horns, and other protections against the malignant power of envy (the evil eye). As she approached the house, Dora briefly greeted the young man who had been waiting there, and he smiled back. Then he grew agitated when she walked right by him, knocked on the door, and told the lady of the house that she was there to consult with Medium João while passing her four liters of fresh milk to give to him. After João’s wife disappeared into the house, the young man protested to Dora that he had been waiting for some time. She responded,
I just went to give some stuff. Don’t worry, kid. You could be here ten years in front of me, if he wants, he’ll see me (first); if he wants, he’ll see you (first). I just gave him some stuff. Medium João is [like] my brother. There’s none of that stuff.
Still upset, the young man stopped talking and João’s wife soon called him in for his consult. Though he attended to the young man first, the medium gave him only a fraction of the time that he would later spend with Dora.
But let me dwell on Dora’s words. Her concluding phrase, “There’s none of that stuff,” begs the question, What stuff? The phrase refers to the norm of egalitarianism that the young man invokes when he implicitly accuses Dora of trying to cut ahead of him in line. Consider that the earlier statements of Dora’s response sketch several, partially overlapping arguments that defend her choice to bypass the young man on her approach to the door. The first phrase suggests that she was there to carry out a personal exchange relationship with the healer, rather than wait for his services. The second is a normative claim that charismatic healers (most of whom are men) enjoy the prerogative to see people in whatever order suits him. The third is a descriptive claim that she has a personal relationship to the healer (troped as siblinghood) that both legitimates her gift of milk and preemptively justifies to the man why he might find himself passed over.
Sociable exchange, the healer’s prerogative, and personal affinity — Dora was mobilizing the forms of agency and value proper to patron-client relationships in order to frame the social space. And to me it seemed that Medium João’s waiting area itself corroborated Dora’s framing — with its material comforts, warm hostess, and its invitations to spiritual humility (supplication before the saint and caution with one’s own evil).
The logic of Dora’s “active waiting” (see Han 2012: 31) contrasts sharply with that of the public hospital waiting room, and this contrast illuminates the mode of suffering that Dora and others experience when accessing public healthcare. It’s not just the long hours and uncomfortable conditions of hospital waiting rooms that bother Brazilians like Dora who seek pubic healthcare; it’s also the feeling (uttered by another consultant) that waiting for SUS “is like being dead.” I read this feeling in light of the centrality of the reciprocal networks of care and favor that produce each person’s social particularity and value (not unlike Strathern’s “dividual”). Patients waiting for SUS services sometimes try to mobilize these networks to gain faster service: they ask local politicians to place phone calls to the hospital on their behalf, and they approach the staff with personal, sympathy-inducing stories that support their appeals for a jeitinho (the colloquial term for a suspension of the rules, literally “a little way”). But through the optics of liberal bureaucracy, these practices appear as selfish and atavistic. Several front desk workers at the local public hospital told me that they routinely rejected such efforts. Perhaps it is they, more than the doctors or administrators, who enforce an ethic of formal equality in the waiting room.
Left to wait just like the stranger next to them, Dora and others experience the wait for public healthcare as a threat to the social articulations that organize their lives. I interpret this deracinated form of waiting as a variant of bare life à propos of Giorgio Agamben (1998). Agamben claims that “modern democracy presents itself from the beginning as a vindication and liberation of zoe” (bare life) (1995: 9). It’s strange then that he develops his discussion of modernity in relation to spaces of abject exception (“the camp”) that indict bare life. The hospital waiting room serves as a better locus to witness bare life’s vindication because its dominant logic treats the human body as the thing to which rights become attached. As a liberal space, the hospital waiting room’s logic strips people of their particular form of life (bios), transforming them into equally-dimensioned, empty vessels into which can be poured an equal amount of rights. While those waiting may continually reassert new social articulations in the face of this deracinating power (see Biehl 2005: 318; Han 2012: 88-89), they nonetheless experience it as a threatening potentiality.
Dora’s quarrel at Medium João’s private home makes sense in light of her refusal to be interpellated as a deracinated (if equal) subject by a state that would keep her waiting far too long for poor medical care.
Aaron Ansell is a cultural anthropologist who specializes in Brazilian state formation, patron-client politics, social policy, and rural community life. His ethnographic writings employ methods from linguistic anthropology to analyze emerging expressions of democratic subjectivity and counter-democratic reactivity. He is currently Assistant Professor of Religion and Culture at Virginia Tech.
The rise of developmental science: Debates on health and humanity – A Special Issue of Social Science and Medicine by Francis Mckay
Shaping the modern child: Genealogies and ethnographies of developmental science
Dominique P. Béhague, Samuel Lézé
Introductory article. No abstract.
This article presents a critique of neuroscientific claims regarding the adolescent brain and the suggestion that adolescent motherhood disrupts the healthy development of the mother and her child. It does so by presenting a genealogical investigation of the conceptualisation of ‘adolescence’ in Western psychology and the emergence of the problematization of ‘adolescent motherhood’. This examination reveals that antecedents to neuroscientific claims regarding adolescent immaturity, impulsivity and instability were articulated by psychologists throughout the first half of the 20th century. However, up until the 1960s there was no problematization of ‘adolescent motherhood’ per se and adolescent mothers were only discussed as part of the concern with ‘unwed mothers’. Exploring the continuities and shifts in assertions regarding adolescence, this article highlights the complex history of some of the notions currently found in neuroscience. In doing so it aims to contribute to a growing body of critical literature questioning the universality of neuroscientific findings.
Developing gender: The medical treatment of transgender young people
Situating the contemporary medical treatment of transgender young people – children and adolescents – in the longer history of engagement between transgender activists and the medical community, this article analyzes the World Professional Association for Transgender Health’s (WPATH) Standards of Care (SOC) concerning the medical treatment of transgender young people. It traces how the SOC both achieves medical treatment for children and adolescents and reinforces a normative gender system by cleaving to a developmental approach. Without rejecting the value of developmentally-based medical treatment for now, it offers some preliminary thoughts on queer theory’s valuation of developmental failure as a potential future alternative to an emergent medico-technological transgender normativity.
This article explores the unintended consequences of the ways scholars and activists take up the science of child development to critique the Japanese child welfare system. Since World War II, Japan has depended on a system of child welfare institutions (baby homes and children’s homes) to care for state wards. Opponents of institutional care advocate instead for family foster care and adoption, and cite international research on the developmental harms of institutionalizing newborns and young children during the “critical period” of the first few years. The “critical period” is understood as the time during which the caregiving a child receives shapes neurological development and later capacity to build interpersonal relationships. These discourses appear to press compellingly for system reform, the proof resting on seemingly objective knowledge about child development. However, scientific evidence of harm is often mobilized in tandem with arguments that the welfare system is rooted in Japanese culture, suggesting durability and resistance to change. Further, reform efforts that use universalizing child science as “proof” of the need for change are prone to slip into deterministic language that pathologizes the experiences of people who grew up in the system. This article explores the reasons why deterministic models of child development, rather than more open-ended models like neuroplasticity, dominate activist rhetorics. It proposes a concept, “ethics of engagement,” to advocate for attention to multiple scales and domains through which interpersonal ties are experienced and embodied over time. Finally, it suggests the possibility of child welfare reform movements that take seriously the need for caring and transformative relationships throughout life, beyond the first “critical years,” that do not require deterministic logics of permanent delay or damage.
Infancy, autism, and the emergence of a socially disordered body
Gregory J.S. Hollina, Alison Pilnick
Twenty academic psychologists and neuroscientists, with an interest in autism and based within the United Kingdom, were interviewed between 2012 and 2013 on a variety of topics related to the condition. Within these qualitative interviews researchers often argued that there had been a ‘turn to infancy’ since the beginning of the 21st century with focus moving away from the high functioning adolescent and towards the pre-diagnostic infant deemed to be ‘at risk’ of autism. The archetypal research of this type is the ‘infant sibs’ study whereby infants with an elder sibling already diagnosed with autism are subjected to a range of tests, the results of which are examined only once it becomes apparent whether that infant has autism. It is claimed in this paper that the turn to infancy has been facilitated by two phenomena; the autism epidemic of the 1990s and the emergence of various methodological techniques, largely although not exclusively based within neuroscience, which seek to examine social disorder in the absence of comprehension or engagement on the part of the participant: these are experiments done to participants rather than with them. Interviewees claimed that these novel methods allowed researchers to see a ‘real’ autism that lay ‘behind’ methodology. That claim is disputed here and instead it is argued that these emerging methodologies other various phenomena, reorienting the social abnormality believed typical of autism away from language and meaning and towards the body. The paper concludes by suggesting that an attempt to draw comparisons between the symptoms of autism in infant populations and adults with the condition inevitably leads to a somaticisation of autism.
Risky, early, controversial. Puberty in medical discourses
Donatella Cozzia, Virginie Vinel
This article comes within the compass of a research program (entitled CorAge. Bodily Experiences and AgePassages among 9–13 year-olds (ANR-09-ENFT-017) conducted between 2009 and 2013 about the emergence of a “new” age in life -“preadolescence”- as instanced in France (Alsace, Lorraine) and Italy (Venetia). The impressive amount of references to “early puberty” and “precocious puberty”, in a context of feeling of a premature end of childhood, led us to make an in-depth study of this issue: first, through an analysis of international and French and Italian medical journals; second, through interviews with health professionals. Following the thesis of Foucault, we assume that the discourses on puberty timing participate of classifications of the child body drenched with moral representations of childhood, especially on gender and age issue. Our results: the question of whether a secular trend in puberty timing even exists continues to be debated between American and European scientists. Second, the terms “puberty”, “precocious puberty”, “early puberty” have been used to indicate a variety of puberty markers, increasing confusion. A controversy has focused on early breast development in girls, because this attribute is questioning the order of ages and gender. Moreover, psychosocial factors presented as accelerating early puberty, do not demonstrate the relation between earliness and risk behavior. The literature, as it is moved by the female precocity, creates a medical category to objectify the complex and flexible process of puberty and invent female child precocity. These differences between American and European scholars and the interviews with French and Italian health professional show a gap between the international literature and practitioners, clinicians and nurses who regularly work with children: they neither find pubertal advancement, nor increase of “true precocious puberty”, although they share concerns about premature feminization of girls (France) or environmental toxicity (Italy) on children.
Much recent scholarship in the field of sociology of childhood has analyzed the disciplinary and regulatory strategies for governing children’s bodies in the name of “health” and “life” in North/Western Europe, North America, and Australia. These analyses problematize how formal and informal pedagogies are shaped by biomedical knowledge, popular media images, and neoliberal agendas in ways not always for the benefit of the children in question. Little research, however, has explored the body pedagogies developed within grass-roots movements concerned with children’s health and well-being; furthermore, little research has explored these topics outside the North American or European space. Following a comparative ethnographic approach, I explore the differences in how and why children eat fruit and vegetables in a) public kindergartens and b) allotment gardens in Berlin, Germany, as well as in c) Landless Workers’ settlements in Espírito Santo, Brazil. The qualitative analysis reveals that biopedagogical concerns often intermingle with ecological as well as broader societal issues, depending on the concrete context in question. This, in turn, poses new questions concerning our understandings of “biopower” and “biopolitics.”
The social work of brain images has taken center stage in recent theorizing of the intersections between neuroscience and society. However, neuroimaging is only one of the discursive modes through which public representations of neurobiology travel. This article adopts an expanded view toward the social implications of neuroscientific thinking to examine how neural imaginaries are constructed in the absence of visual evidence. Drawing on ethnographic fieldwork conducted over 18 months (2008–2009) in a United States multidisciplinary pediatric pain clinic, I examine the pragmatic clinical work undertaken to represent ambiguous symptoms in neurobiological form. Focusing on one physician, I illustrate how, by rhetorically mapping the brain as a therapeutic tool, she engaged in a distinctive form of representation that I call neural imagining. In shifting my focus away from the purely material dimensions of brain images, I juxtapose the cultural work of brain scanning technologies with clinical neural imaginaries in which the teenage brain becomes a space of possibility, not to map things as they are, but rather, things as we hope they might be. These neural imaginaries rely upon a distinctive clinical epistemology that privileges the creative work of the imagination over visualization technologies in revealing the truths of the body. By creating a therapeutic space for adolescents to exercise their imaginative faculties and a discursive template for doing so, neural imagining relocates adolescents’ agency with respect to epistemologies of bodily knowledge and the role of visualization practices therein. In doing so, it provides a more hopeful alternative to the dominant popular and scientific representations of the teenage brain that view it primarily through the lens of pathology.
“Learning how to deal with feelings differently”: Psychotropic medications as vehicles of socialization in adolescence
Suparna Choudhury, Kelly A. McKinney, Laurence J. Kirmayer
Drawing from ethnographic research among clinicians working with adolescents at a hospital psychiatric emergency department and outpatient clinic, and with interviews with adolescent psychiatric patients and their parents, we examine how psychiatric medicines function as socializing agents. Although psychiatric medications are thought to exert their main effects through direct biological action on neural circuitry, in fact, their use mobilizes specific kinds of moral discourse and social positioning that may have profound effects on sense of self, personhood, and psychological development. Specifically, our data reveal how clinical discourse around medications aims to enlist adolescents in becoming responsible, emotionally intelligent selves through learning to manage their medications. Among doctors, adolescents and their families, talk about psychiatric medications intertwines narratives of ‘growing up’ and ‘getting well’. Our analysis of case studies from the clinic thus demonstrates that while psychiatric medications are explicitly designed to influence behavior by acting directly on the brain, they also act to structure adolescents’ selves and social worlds through indirect, rather than direct causal pathways to the brain.
In the late 1990s researchers in Pelotas Southern Brazil began documenting what they considered to be unacceptably high rates of licensed psychotropic use among individuals of all ages, including youth. This came as a surprise, since the vast majority of psychiatrists in Pelotas draw on psychoanalytic theory and approach pharmaceutical use, especially for children and adolescents, in a consciously tempered way. Drawing from a longitudinal ethnographic sub-study, part of a larger 1982 birth cohort study, this paper follows the circuitous trajectories of emergent pharma-patterns among “shantytown” youth over a ten-year period, exploring the thickly layered and often moralized contingencies in which psychodynamic psychiatrists’ intention to resist excessive pharmaceuticalization both succeed and crumble. I juxtapose these trajectories with the growing salience of an “anti-biologizing” explanatory framework that psychiatrists and researchers are using to pre-empt the kind of diagnostics-driven “biopsychiatrization” so prevalent in North America. My analysis suggests that psychiatrists’ use of this framework ironically contributes to their failed attempts to “resist” pharmaceuticalization.
The phrase “Contraindre est thérapeutique”—constraining is therapeutic—underpins the principle of numerous interventions within the field of mental health in France, ranging from traditional psychiatric units to the courthouse to violence management and prevention of dangerousness. The treatment of violence in “difficult and violent adolescents” provides a paradigmatic and revealing example of this tendency. The aim of this article is to understand how the clinical category—contenir, or “to contain”—was formed and is used. The perspective taken is that of the political anthropology of mental health and the article combines a genealogical approach of the notion with a multisite ethnographical study (conducted between September 2008 and June 2012 in three facilities for adolescent care). This study will show how “psychological holding” is used to justify “physical constraint” in the treatment of adolescent crisis and violence. Furthermore, we will see how this “dirty work”, delegated to front-line professionals (educators, social workers, nurses), is used within a moral economy of suffering that promotes care and control measures in a population largely from immigrant backgrounds, judged to be both potentially vulnerable and dangerous.
The mental health of Indian school children could be expected to be a major topic of research. More people below 15 years are living in India than in any other country in the world, and India has undergone rapid social, economic, and demographic changes that have greatly increased the pressures on children to do well in school. Yet there is a striking dearth of research in this field. In this article we present the first-ever study focused on child psychiatrists in India. Based on long-term fieldwork and interviews with psychiatrists in the Kolkata metropolitan area, we present a habitography of how psychiatrists experience young people’s problems. Child psychiatrists are greatly concerned about the nexus between heightened expectations of educational success and a rise of mental problems among young people. At the same time, they wonder why not many more children are coming to them with school-related complaints. To date, there is not enough research that could either confirm or disconfirm the psychiatrists’ analysis of social changes, but some conclusions on the plausibility of their views can be drawn.
The Americans with Disabilities Act After 25 Years – A Special Issue of Disability Studies Quarterly by Francis Mckay
Twenty-Five Years After the ADA: Situating Disability in America’s System of Stratification
Michelle Maroto, David Pettinicchio
Americans with disabilities represent a significant proportion of the population. Despite their numbers and the economic hardships they face, disability is often excluded from general sociological studies of stratification and inequality. To address some of these omissions, this paper focuses on employment and earnings inequality by disability status in the United States since the enactment of the 1990 Americans with Disabilities Act (ADA), a policy that affects many Americans. After using Current Population Survey data from 1988-2014 to describe these continuing disparities, we review research that incorporates multiple theories to explain continuing gaps in employment and earnings by disability status. In addition to theories pointing to the so-called failures of the ADA, explanations also include general criticisms of the capitalist system and economic downturns, dependence on social welfare and disability benefits, the nature of work, and employer attitudes. We conclude with a call for additional research on disability and discrimination that helps to better situate disability within the American stratification system.
Disability, Poverty, and Material Hardship since the Passage of the ADA
Julia A. Rivera Drew
The past 25 years have seen an unprecedented expansion in formal civil rights for people with disabilities that, among other things, was predicted to improve their economic well-being. Studies of economic well-being among people with disabilities have traditionally focused on employment and earnings, despite the fact that a minority of people with disabilities are employed. More recent literature has expanded to include measures of income poverty and material hardship, but has not examined trends in these dimensions of economic well-being over time or across different groups of people with disabilities. The current study uses nationally representative data covering the 1993-2010 period to examine trends over time in cross-sectional and dynamic measures of income poverty, and multiple dimensions of material hardship. It also describes differences in time trends by education, sex, race/ethnicity, and employment status among people with disabilities in income poverty and any material hardship. Levels of both material hardship and income poverty are high across the entire period for all groups, but while material hardship remains at the same level between 1993 and 2010, income poverty declines. These findings show that there has been little improvement over the past two decades in the economic well-being of people with disabilities, and additional research is needed to understand the mechanisms that keep even groups that are relatively privileged — college graduates and full-time, full-year workers — at very low levels of economic well-being.
This study identified patterns and trends of litigation in all reported U.S. Appellate Court ADA cases charged under the theory of disparate impact (unintentional discrimination) from 1992 through 2012. The results produced four themes: accommodation(s); workplace culture, norms, and policies; judicial process; and policy space; and three relationships: gap-filling, weighing and balancing, and maintaining status quo versus effecting social change. The results may provide information about the types of workplace policies and procedures that are most frequently litigated. Disability scholars, advocates, and practitioners may be able to use the information to develop education and outreach strategies for employers on best practices for hiring, accommodating, and promoting employees with disabilities. The results may also be used to educate and inform advocates about the process of litigation. A greater understanding of how judges make decisions in a subset of ADA cases may increase employees with disabilities’ ability to self-advocate in the workplace.
This article draws on theories of gendered organizations to examine discrimination against people with disabilities in the workplace. A sample of 200 cases that document disability discrimination lawsuits was drawn from the Westlaw legal database. Each case was coded for gender, job, disability and discrimination type and analyzed using multinomial logistic models. Of those 200 cases, 34 were selected for in depth qualitative analysis. This study finds that disability type, job type, and gender do have an influence on the type of discrimination someone is likely to experience. In addition, the qualitative analysis finds that the social processes of discrimination differ based on job type and gender pointing to intersections of disability and class as well as gender and disability.
Beyond the Law: A Review of Knowledge, Attitudes and Perceptions in ADA Employment Research
Robert Gould, Sarah Parker Harris, Kate Caldwell, Glenn Fujiura, Robin Jones, Patrick Ojok, Katherine Perez Enriquez
The Americans with Disabilities Act (ADA, 1990) is the cornerstone of civil rights policy for people with disabilities. Although enforced through the justice system, the legacy of the ADA transcends well beyond its legal ramifications. The policy’s framework and the rhetoric of Disability Rights suggest both an embrace of the spirit and the letter of the law, or promulgating both legislative and cultural change to ensure that the rights of people with disabilities are met. In attempting to understand how and if such change has happened, researchers have gathered extensive evidence since 1990. Much of this research evidence, however, remains fragmented, under-utilized, and at times inconclusive. This article presents the results of a rapid evidence review of a sample of such research that is crucial to understand the ADA’s progress. The study examines evidence about the ADA’s influence on knowledge, attitudes and perceptions about employment of people with disabilities. The research illustrates the importance of moving beyond the law to incorporate changes in knowledge about the law, perceptions of employability, and workplace culture.
According to the ADA, people with disabilities have the right to participate in public park and recreation services. Important gains in their access to activities of their choosing since the ADA was written into law, in part due to individuals being able to request reasonable accommodations. The purpose of this study was to understand the perspectives of people with disabilities who participate in public park and recreation services on whether their accommodation needs are met and if they are effective in facilitating meaningful recreation experiences. Participants reported requesting reasonable accommodations was a way to exercise civil rights and gain access to meaningful recreation activities. They also reported a duality in requesting accommodations in that they were met with confusion, lack of understanding, and reluctance. It is recommended that the park and recreation profession undergo a paradigm shift and embrace making reasonable accommodations as an important professional skill.
Since the enactment of the Americans with Disabilities Act (ADA, 1990), many impaired Americans are no longer disabled by socially condoned conditions in the built environment. However, many people with cognitive and neurological impairments continue to face significant barriers to access, due to disabling environmental hyper-sensitivity and sensory processing disorders. These people are equally protected under the ADA, therefore mitigation is required. Neuroarchitecture, where consideration of the impact of the built environment on the central nervous system informs design paradigms, must complement current ADA compliance guidelines. This paper serves to open the topic to discussion, and is a call for attention, and action, for the removal of these generally unrecognized barriers to access and the equal use and enjoyment of public facilities.
“Most of Them Are Amateurs”: Women with Spinal Cord Injury Experience the Lack of Education and Training among Medical Providers While Seeking Gynecological Care
Heather Elise Dillaway, Catherine L. Lysack
Although the American Disabilities Act (ADA, 1990) became federal law more than two decades ago, individuals with disabilities continue to experience substandard healthcare. We use this article to hone in on disabled women’s experiences of seeking gynecological care and the access disparities they still face. The data for this qualitative study were gathered using in-depth interviews with 20 women living with spinal cord injuries in or around Detroit, Michigan. Each interviewee was questioned about overall health and physical functioning, accessibility of doctor offices, interactions with health care providers, and gynecological health-seeking behaviors. In this paper we report on women’s gynecological healthcare experiences and related attitudes and practices, and what women see as the primary structural and social barriers to comprehensive care. Findings echo past literature about the inaccessibility of doctor’s offices, including the lack of suitable exam tables. However, our findings also suggest that the lack of education and training among medical providers could be a key social barrier and determinant of whether individual women actually secure gynecological care.
Civil rights laws including the Civil Rights Act of 1964, Title IX of 1972, Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 worked to protect classes and individuals for whom discrimination had been documented. In an effort to further remedy educational inequality, colleges and universities increasingly used identity categories to enable access and participation in postsecondary life. In addition to anti-discrimination statutes, attention to marginalized groups evolved to include larger networks of academic and co-curricular support such as formations of identity centers, cultural events, fields of study and scholarships yet disability is largely absent from this work as much of higher education maintains a singular focus on legal compliance. This study investigates how disability law is conceived and enacted on five divergent campuses and how participants understood both the function of disability law and other cultural, social and political aspects of disability-related identities.
The Civil Rights Movement spurred social changes that impacted many, including people with disabilities; while the ADA ideally provides the groundwork for greater accessibility, accessibility is an ideal that is not yet fully realized. The professionals in Disability Studies and those in Disability Services are working in often parallel contexts with little overlap and still very limited intentional interaction. This article suggests possible goals that deliberate coalition forming between the fields could set that would facilitate greater accessibility to educational environments, coalitions being informed in part by the specialized knowledge that each field contributes. As happened during the Civil Rights Movement, ideas and processes which begin on campus then have an opportunity to be carried out into broader social contexts, increasing equitable access beyond campus settings and more fully realizing the goals of the ADA.
Disability Culture and the ADA
Steven E. Brown
This article begins with a personal, pre-Americans with Disabilities Act (ADA) story of employment discrimination and how from it I became involved with the Disability Rights Movement. The narrative then moves into my finding, exploring and discussing the importance of Disability Culture. Finally, thoughts are shared about the intersection of Disability Culture with the ADA.