Conceptualizing Autism Around the Globe — A special issue of Culture, Medicine and Psychiatry by Aaron Seaman
The current issue of Culture, Medicine and Psychiatry is a special issue, edited by M. Ariel Cascio and entitled “Conceptualizing Autism Around the Globe“. Along with six original articles, the issue is framed by an introduction by Cascio, “Cross-Cultural Autism Studies, Neurodiversity, and Conceptualizations of Autism“, and a closing commentary by Roy Richard Grinker, “Reframing the Science and Anthropology of Autism“. As Grinker writes, pointing toward the importance of a comparative approach to studying autism:
The concept of culture in autism research is…useful not just for characterizing a community’s system of meanings that influence how autism is identified, managed, experienced, etc., but for showing that those meanings are constructed and can therefore be changed. In an earlier volume on autism, published in Ethos, Nancy Bagatell (2010) describes the recent emergence of autistic communities and autistic identities as both a rejection of biomedical and deficit model, and as a new form of sociality made possible by historical conditions. In Silicon Valley, for example, autism is increasingly less stigmatized and more valued as employers begin to associate autism with the cognitive skills necessary for innovation in high technology. Bagatell (2010: 51) writes, “It is evident that as society is transformed by technology, the nature of human sociality may be scaffolded and transformed in ways that come to mirror an autistic sociality and thus reframe the disabling properties of autism itself in more positive terms.” … Cultural practices thus can shape the experience of autism, and autism can in turn shape cultural practices. …All of these authors focus on what people with autism can do, rather than what they cannot do, or what might have been; and they equally focus on what societies can do to change the lives of people with autism.
The changing face of autism in Brazil
Clarice Rios and Barbara Costa Andrada
At the end of 2012, after intensive lobbying by parent activist associations, a federal law recognized autism as a “disability for all legal purposes” in Brazil. Defining autism as a disability was more than a change of legal status to guarantee social benefits. It was also a political maneuver, orchestrated by parent associations, aimed to take the responsibility for treatment away from the public mental health network of services. This article examines the controversies that have set parent associations in direct antagonism with mental health professionals in the public health system. We draw from ethnographic data and theoretical discussions in the field of disability studies to situate these controversies within the context of a larger debate on the relationship between health, rights, and citizenship. We found similarities between the ethical and political goals of parent activists and mental health professionals in Brazil, but we argue that the main cause of dissent is the role that each of these social actors assigns to identity politics in their clinical and political projects.
Many therapies, interventions, and programs seek to improve outcomes and quality of life for people diagnosed with autism spectrum conditions. This paper addresses Italian professionals’ perspectives on a variety of such interventions, including TEACCH, ABA, Defeat Autism Now!, and Doman–Delacato. Drawing on participant-observation and interviews collected in 2012–2013 in a northern region of Italy, it highlights the theme of “rigidity” that appears in professionals’ discourses about both the characteristics of people with autism and the potential risks of adhering too strictly to any particular treatment protocol. The co-occurrence of the theme of rigidity across different domains demonstrates a way in which diagnostic characteristics become metaphors for medical practice. This paper proposes that such discursive moves may help bridge the gap between people with autism and people who work with them because a key attribute of people with autism—thinking and/or acting rigidly—is also a potential pitfall for people without autism.
The home is a critical place to learn about cultural values of childhood disability, including autism and intellectual disabilities. The current article describes how the introduction of autism into a home and the availability of intervention options change the structure and meaning of a home and reflect parental acceptance of a child’s autistic traits. Using ethnographic data from Kerala, India and Atlanta, GA USA, a description of two types of homes are developed: the custodial home, which is primarily focused on caring for basic needs, and the therapeutic home, which is focused on changing a child’s autistic traits. The type of home environment is respondent to cultural practices of child rearing in the home and influences daily activities, management, and care in the home. Further, these homes differ in parental acceptance of their autistic children’s disabilities, which is critical to understand when engaging in international work related to autism and intellectual disability. It is proposed that parental acceptance can be fostered through the use of neurodiverse notions that encourage autism acceptance.
Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program
Rachel S. Brezis, Thomas S. Weisner, Tamara C. Daley, Nidhi Singhal, Merry Barua, and Shreya P. Chollera
In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent–Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents’ narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child’s immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to ‘normality,’ and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents’ experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of ‘parents of children with autism.’
Every summer, a group of role-playing gamers gathers in an American town. Dressed up as moon goddesses, mad scientists, and other fantastical characters, they act out elaborate, improvised narratives of transformation, destruction, and redemption. For several summers, this group, who I call the Journeyfolk, ran a camp for teenagers on the autism spectrum, engaging campers in therapeutic reconfigurations of self and social role. Through this folk healing practice, the meaning of autism was itself transformed; what had been a source of isolation became a source of commonality and community. This paper takes the camp as a case study for examining the co-productive relationship between culture and neurodiversity. Cognitive tendencies often found in autism are often thought to preclude socio-cultural participation. However, such tendencies can also facilitate the co-creation of innovative cultural spaces, through processes of affinity and affiliation. Drawing on ethnographic fieldwork at the camp, I identify three sites of congruity between the culture of the camp and the cognitive and phenomenological experiences associated with autism, at which this “work of culture” (Obeysekere in The Work of Culture: Symbolic Transformation in Psychoanalysis and Anthropology, University of Chicago Press, Chicago, 1990) took place: the structure of social interactions within roleplaying games, the narratives enacted within these games, and the interpersonal relationships within which the games were embedded.
‘Being autistic’ or ‘having Autism Spectrum Disorder’ implies a limited range of ‘being social,’ but the in situ organization of interaction, what Maynard and Marlaire (Qual Soc 15(2):177–202, 1992) call the ‘interactional substrate,’ within which this delimitation enfolds is usually hidden from sight. Analysis of processes constituting different ‘interactional substrates’ provides a view of how one comes to be known by and to self and others as a certain kind of being who is available (or not) for acting and feeling in certain ways. People diagnosed with Autism Spectrum Disorder (American Psychiatric Association, Diagnostic and statistical manual of mental disorders, 2013) are often described as ‘being’ impaired in intersubjective understanding of others. But the story of ASD as an impairment of sociality and intersubjectivity becomes more complicated when animals enter into the picture. I consider two interactional substrates: a psychological interview in a mental health clinic, and an animal-assisted activity in a child’s neighborhood. I aim to elucidate the practical problems of ‘being social’ encountered by two children with ASD, both nine-year-old girls, within these two very differently organized interactional substrates. I consider ways in which ‘being with’ therapy animals provides a way of ‘being social’ through “sensory modalities of knowing” (Haraway, When species meet, 2008:371).
I am an anthropologist researching postwar revival and development in Lao PDR (Laos), the most cluster-bombed country in the world (Branfman 2013). Through fieldwork with development organizations and bomb clearance operators, I examine how ongoing violence, due to explosive remnants of war, is incorporated into peacetime development. Inspired by the theme of this series, Inhabitable Worlds, I take this opportunity to interrogate how war-contaminated areas are also sites of disability care and assistance. How are hazardous areas productive of certain kinds of bodies and disabilities? Is living in danger a disability? The ethnographic data I use in this paper is by no means characteristic of the entire disability sector in Laos, but is perhaps characteristic of the confluence of danger and rehabilitation in postwar zones. Here, I trace my thinking through this phenomena towards the beginnings of a theory of bomb ecologies.
I am studying a context in which people qualify for social services based on their status as disabled or as war victims/survivors; but, in practice, what qualified people as one or the other is very uncertain. I hesitate to offer definitions of disability, victimhood, or survivorship since definitions are not forthcoming from my ethnographic data. Definitions might mislead the reader into thinking that these are stable categories applied to groups of people in Laos—a mode of thought that is counter to my goal in this post. In Laos, there is no consensus among stakeholders about the definitions of disability, victimhood, or survivorship. The Convention on Cluster Munitions, for example, defines victims as “all persons who have been killed or suffered physical or psychological injury, economic loss, social marginalisation or substantial impairment of the realisation of their rights caused by the use of cluster munitions. They include those persons directly impacted by cluster munitions as well as their affected families and communities” (Article 2.1). Given the extreme levels of contamination in Laos, victim assistance interlocutors recognize that all Lao citizens qualify as victims under the Convention and, therefore, use this definition with caution. In practice, victim generally refers to people who have been physically injured by unexploded ordnance left over from the Vietnam-American War (note that this definition does not include people with non-physical injuries or those impacted by Agent Orange). Survivor refers to victims that survive the explosion. There is no consensus on the Lao word or definition for disability and the English phrase people with disabilities (usually shortened to PWD) predominates. Disability generally refers to people with physical, visible impairments. The definitions are in tension: survivors are almost always people with disabilities, and almost all people with disabilities have physical impairments that look like the injuries of survivors.
A half-century after the Vietnam-American War, the Lao disability sector (the official term for the mix of non-governmental and governmental programs, services, and regulations/laws for the disabled) is generally skewed towards survivors and associated lower-limb loss. For example, the state’s prosthetics factory specializes in inexpensive polypropylene legs (in the photo above), a style of leg which was originally designed for Cambodian landmine survivors. Care for invisible disabilities associated with war, such as post-traumatic stress disorder, or for congenital disabilities due to Agent Orange, are nearly nonexistent in Laos’ disability sector. It is far easier to receive care for limb loss, especially lower-limb loss, than for other kinds of disabilities. Survivors receive services as if they were all disabled, even though many do not sustain disabilities. More than this: A person with one leg may be recognized as a survivor regardless of whether they lost their leg in an explosion or not. This person may be treated at clinics that specialize in war-injuries, and may even be hired by an NGO as part of common policies to preferentially hire survivors.[i]
These inequalities in care are partially the result of translocal systems of survivorship, via important groups such as the Landmine Survivors’ Network and the International Campaign to Ban Landmines. Building upon the pioneering work of these and other organizations, standards for the care of survivors tend to assume landmines and the lower limb injuries they cause. While survivors are recognized as a subset of a larger disabled population by care providers, in practice, disability services are often a subset of translocal survivor services in war-contaminated countries. War contamination is the standard catch-all phrase for remnants of war such as minefields, unexploded ordnance, and toxic wastes like Agent Orange. The lives of landmine survivors and the dangers of landmines are foregrounded in representations of war contamination globally, with very real consequences for people’s safety and health. Caught in translocal systems of survivor assistance based on landmine contamination, Laos winds up receiving expert care for disabilities that are far more likely to occur in Cambodia, Iraq or other heavily mined countries.
Standards of care for lower-limb loss persist despite the fact that most survivors in Laos are not involved in landmine accidents and do not lose a lower limb (Boddington & Chanthavongsa 2009). The key difference across these zones of intervention is the type of contamination: unlike most other war-contaminated countries, the majority of war remnants in Laos are cluster-bombs. Cluster-bombs (or cluster-munitions) are usually dropped from aircrafts, breaking open in mid-air to disperse hundreds of submunitions over large areas. Usually, submunitions, or “bombies” as they are commonly known in Laos, are about 20 kilograms in weight, spherical, and fist-sized. Bomblets that fail to detonate are quite durable and generally do not explode if they are later disturbed or stepped on. Unlike minefields, which are often too dangerous to farm, cluster-bombed areas are commonly farmed and inhabited. Due to the particular features of this kind of ordnance (small size, stability, and geographical spread), people may live in even very contaminated areas. In postwar Laos, cluster bombs are the largest source of casualties (Boddington & Chanthavongsa 2009). Cluster bombs, unlike landmines, tend to provoke upper-body injuries (people pick them up). In the first national survey of survivors conducted in 2008, 70% of injuries were to the upper-body. Roughly one-quarter of all survivors qualified for a prosthesis—though only a tiny fraction reported receiving one (Boddington & Chanthavongsa 2009).
Survivorship and victim assistance in Laos, as I now see it, are part of translocal ecologies of war contamination (i.e. areas impacted by different types of contamination) which are also “woundscapes,” i.e. zones “marked by injuries to bodies that index particular moments in the wounding capacity of technologies” (Terry 2009:203). These woundscapes are, importantly, zones of intervention for victim assistance organizations and bomb clearance operators. People with disabilities in Laos are being pre-figured by international patterns of war contamination, and by interventions generally designed to care for landmine survivor populations. From my point of view as a researcher, the experience is like shifting a holographic image until the perspectives align: What I am studying is no longer disability, per se, but how people inhabit a contaminated ecology that produces particular disabilities.
Why an ecology? 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). Branfman argues, based on military reports from the war, that the bombing of Laos was designed to destroy Lao society, to literally obliterate the foundations of the potential communist state (2013). Thinking through ecologies is one way to comprehend this pervasive, long-term transformation. Faced with a similar kind of transformation, Masco analyzes how the bomb produces “mutant ecologies” in post-Cold War New Mexico (Masco 2006: 298). Nuclear radiation permeates New Mexican social and material systems with its potential, setting the conditions for new ways of living and dying. Outside of military domains, theories of ecology have productively been used to think through contamination, latency, and risk (e.g. Choy 2011; Fortun 2001; Nash 2006; Petryna 2003). [ii] At more intimate scales, theories of ecology help me to understand how danger and disability become part of people’s worlds—literally, via the bombs in the soil.
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. In a village in Khammuan Province of about one hundred and fifty people, an older resident told me that there were presently twenty living residents who had been injured in explosions. While this is an exceptionally high number, estimates of an average of five survivors per village are no more reasonable (Boddington & Chanthavongsa 2009). And yet, invariably, if I ask the village authorities if they have any problems with bombs, they will say “No, we have no problems.” There are several reasons why this paradoxical answer makes sense, not least being that it is illegal to deal in war scrap. Repeatedly meeting this response, I came to understand that war contamination is integrated into the local ecology—with all of the danger that implies. War waste are no longer exceptional and present as one among many risks in vulnerable communities (alongside scarce food, disease, landlessness, indebtedness, and malevolent spirits as reported by Uk 2006).
Houses, fences, and even livelihoods are built using scavenged war wastes. Empty bomb cases are used as planters, troughs, poles for stilt houses, even bells in Buddhist temples. Gunpowder and other contaminants in the soil affect crop production. Metals are melted down into household goods, or sold to scrap dealers. War wastes drive cottage industries and the international trade in scrap metal, alike. In her analysis of imperial ruins, Stoler identifies war contamination in Southeast Asia as a prototypical example of how imperial projects (long since dead) become part of local ways of life—what I am calling bomb ecologies (2013:26). Part of a larger imperial formation, the postwar boom in scrap metal trading may be understood to presage the current transformation from battlefields into markets (to paraphrase a famous quote by Thai Prime Minister Chatichai Choonhavan) (quoted in Phraxayavong 2009:163-64). The fact that scrap traders may effect this transformation at the local level by risking exposure to explosive war waste is disturbing, but unsurprising in a bomb ecology. Clearance technicians in Laos face the peculiar problem of some residents refusing to give up their bombs for demolition without due compensation for the loss!
Disability takes a particular shape in this bomb ecology. I met with a man working as a bomb clearance technician who is also a disabled survivor of a cluster bomb explosion. Having lost his leg in the explosion, he was initially able to draw on the local expertise of other survivors to make his first prosthetic leg out of bamboo. The military later provided him with a standard-issue aluminum leg in a program designed to help war martyrs. War martyrs are people that died or were significantly injured during the revolutionary struggle; they or their families may receive certain benefits from the government. This man is not legally a war martyr but received the aluminum leg as if he was. More recently, he was trained as a bomb clearance technician under a preferential hiring program to give people with disabilities access to quality jobs. The clearance operator that employs him prefers to hire survivors, but also hires people with disabilities more generally. His clearance sector job came with two new government-manufactured legs: a “village leg” and a “work leg,” the latter made out of plastic to prevent interference with metal detectors. This practice of making all-plastic legs to enable survivors to work as clearance technicians was first developed for deminers in Cambodia. Landmine clearance requires using metal detectors set at a high sensitivity that might detect the metal joints of a conventional prosthetic. In cluster bomb clearance, which is more granular and diffuse, much lower sensitivity is required and the chances of a prosthetic interfering with the detectors is quite low. In this way, even though this man isn’t a deminer, he has a deminer’s leg. In this bomb ecology, even the artificial legs may be designed for inhabiting minefields elsewhere.
Including his remaining leg, this man possesses not two, but five legs. His body indexes shifts in medical care and politics over time, from a homemade bamboo leg to a biomedical prosthetic, manufactured by the postsocialist state to facilitate wage-labor employment. Political changes in this ecology produce different iterations of his body; some more comfortable than others, some easier to take care of, some more employable. The all-plastic work leg, in particular, enables him to support his family in ways that the other legs do not. Limb loss multiplies the body via artificial limbs, adaptive technologies, medical procedures, phantom limbs, etc. Grounded in this ecology, multiplicity is part of how people become disabled or come to recognize themselves as disabled in different ways at different times. Disability is multi-scaling; a body or an individual body part is an ecology at another scale. These are not only five different legs, they are also five different ways of being legless.
Whether understood as a bomb ecology, disaster culture (Button 2012), or risk society (Beck 1986), danger has become productive of certain kinds of bodies and disabilities. Such conjunctures between individual bodies, geopolitics, and environments may point to deeper processes of power in postwar zones. The bombing of Laos was the first automated, digitized air war, and remains the most intense air war in history (High, Curran & Robinson 2013). The war’s legacy of ongoing violence is unfortunately prescient of what is beginning in other areas: Syria, for example, might be an emerging cluster bomb ecology. There is a need for further study of the expanding domain of postwar reconstruction and the codependence of military and medical practices within this domain. It is increasingly important to study the transition from battlefields to marketplaces, and the reconstruction and rehabilitation practices that attend this transformation.
[i]Due to the political sensitivity of disability and clearance practices in contemporary Laos, I have removed any subject-identifiers from my ethnographic data that are not essential to my argument in this paper (as I have in this example). Many common practices, such as war-scrap trading or village clearance ‘volunteering,’ are technically illegal. In some areas, even owning a metal detector may be prohibited. I use names or other subject-identifiers in ethnographic data only with permission or if this information is publicly available elsewhere.
[ii] Theories of ecology that I quote here are distinct from theories of political ecology. See, for example, Baird and Le Billion’s work on the political ecology of war contamination in Laos (2012).
Baird, Ian G. and Philippe Le Billon. 2012. “Landscapes of Political Memories: War legacies and land negotiations in Laos.” In Political Geography 31 (5): 290-300.
Beck, Ulrich. 1986. Risk Society: Towards a New Modernity. Los Angeles: Sage Publications.
Boddington, Michael A. B., and Bountao Chanthavongsa. 2009. National Survey of UXO Victims and Accidents: Phase 1. Vientiane: National Regulatory Authority for UXO/Mine Action Sector Lao PDR (NRA).
Branfman, Fred. 2013. Voices from the Plain of Jars: Life Under an Air War. Second Edition. Madison: U of Wisconsin Press.
Button, Gregory. 2012. Disaster Culture: Knowledge and Uncertainty in the Wake of Human and Environmental Catastrophe. Walnut Creek: Left Coast Press.
Choy, Timothy K. 2011. Ecologies of Comparison: An Ethnography of Endangerment in Hong Kong. Durham: Duke UP.
Convention on Cluster Munitions. Dublin, Ireland. May 30, 2008. United Nations Development Program. www.clusterconvention.org.
Fortun, Kim. 2001. Advocacy After Bhopal: Environmentalism, Disaster, New Global Orders. Chicago: U of Chicago.
High, Holly, James R. Curran, and Gareth Robinson. 2013. “Electronic Records of the Air War Over Southeast Asia: A Database Analysis.” Journal of Vietnamese Studies 8(4): 86-124.
Masco, Joseph. 2006. Nuclear Borderlands: The Manhattan Project in Post-Cold War New Mexico. Princeton: Princeton UP.
National Regulatory Authority for UXO/Mine Action Sector (NRA). 2010. The Unexploded Ordnance (UXO) Problem and Operational Progress in the Lao PDR: Official Figures. Vientiane: NRA.
Nash, Linda Lorraine. 2006. Inescapable Ecologies: A History of Environment, Disease, and Knowledge. Berkeley: U of California Press.
Petryna, Adriana. 2003 Life Exposed: Biological Citizens after Chernobyl. Princeton: Princeton UP.
Phraxayavong, Viliam. 2009. History of Aid to Laos: Motivations and Impacts. Chiang Mai: Mekong Press.
Stoler, Ann Laura. 2013. Introduction: “The Rot Remains”: From Ruins to Ruination. In Imperial Debris: On Ruins and Ruination. Durham: Duke UP.
Terry, Jennifer. 2009. “Significant Injury: War, Medicine, and Empire in Claudia’s Case.” WSQ: Women’s Studies Quarterly 37(1-2): 200-25.
Uk, Krisna. 2006. Local Perceptions and Responses to Risk: A Study of a Cambodian Village. Geneva: Geneva Institute for Humanitarian Demining.
Leah Zani is a PhD candidate in the Department of Anthropology at UC Irvine. She welcomes comments at lzani @ uci . edu.
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. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).
Harvard University Press, 2014, 384 pages.
Historians have not handled psychoanalysis very well. The clumsy reductionism of much of the psychohistory movement is usually Exhibit A, though historians such as Dominick LaCapra and Joan Scott have been developing more nuanced ways of using psychoanalytic ideas for History. But the historiography of psychoanalysis has also had some glaring weaknesses. One of them has been a tendency to focus too much on Freud and his early followers. In this, it mirrored the psychohistory movement, which often treated psychoanalytic and Freudian thought as identical. This identification was one Freud encouraged. He enforced orthodoxy, and in the process damaged his legacy more than he could have imagined. There have nevertheless been many creative developments in psychoanalysis since Freud, though for too long it was politically necessary to frame them as a return to Freud’s true meaning. The development of psychoanalysis since Freud’s death in 1939 is only beginning to get the attention it deserves from historians. In The Americanization of Narcissism, Elizabeth Lunbeck gives us one of the best accounts, one that shows keen mastery of subtle theoretical distinctions, and is loaded with insightful readings of major figures.
Lunbeck stresses the protean quality of the concept of narcissism. This quality may have undermined clarity on some discussions, but, Lunbeck argues, it has also been a source of creative reinvention. Much of the book is focused on the contrast between Heinz Kohut and Otto Kernberg, and the embellishment of these émigré analysts’ insights by American social critics. Where Kohut amplified a minority view within psychoanalysis that stressed the possibilities of a healthy narcissism, Kernberg was more focused on its darker side, the rage and manipulation of others that characterized pathological narcissism. Christopher Lasch’s Culture of Narcissism was among a number of works that sought to apply these theories to a wider critique of American society, though as Lunbeck shows, in most cases they missed Kohut’s concept of healthy narcissism, and took Kernberg’s focus on individual pathology to a generalized social theory he did not sanction. Lunbeck’s critical reading of Lasch is convincing. Lasch appears incompletely and very selectively educated on psychoanalytic theory. His acerbic critique of American consumer capitalism increasingly seems tied to a nostalgic political outlook that was more reactionary than radical, and one particularly threatened by feminism.
Historians most deeply hostile to psychoanalysis have had to account for its popularity, even if that has waned. Among the social explanations offered, at least for the United States, has been that it offered a hopeful vision of personal transformation, even if it is one that departed from Freud’s own tragic stoicism. This poses a riddle: why did Lasch’s work become so popular, while espousing such a sour view of therapeutic optimism, when that optimism was running very high? Possibly, it was simply his distinctively caustic prose and Zeitgeist-catching title.
Lunbeck eschews a chronological approach, and her efforts to tease out the many strands of theory on narcissism include compelling discussions of the earlier generations of analysts. Perhaps most fascinating is the exploration of the fraught triangular relationship among Freud, his most loyal of disciples Ernest Jones, and Joan Riviere, who was analysand of both men and lover to Jones. As Lunbeck points out, Riviere was a prescient figure—according to Lunbeck, narcissism’s “first phenomenologist”—and she remains under-studied. We lack a full-length biography of Riviere, who developed important concepts such as the negative therapeutic reaction, crucially influenced Judith Butler’s elaboration of gender as performance, and anticipated Kohut’s concept of a healthy narcissism.
In her exposition of Kernberg, Lunbeck mentions Kernberg’s view that the few people narcissists value are extension of themselves, who would need to be discarded if they disappointed in that role. This actually seems an apt description of Freud’s relationship to many of his followers. Of his closest colleagues, the ones who were cast out of the movement—Carl Jung, Alfred Adler, Otto Rank, and to some extent Sandor Ferenczi—were the ones who had the most original ideas. It is not an exaggeration to say that Freud wanted followers to apply his theories to new materials, but not to develop new theories of their own. As Lunbeck’s careful and lucid readings of later analysts show, Freud’s own narcissistic drive to tether psychoanalysis to his own formulations was outstripped by the potentials others discovered in the complex field he founded.
The historiography of psychoanalysis has been dominated by the classic historical trope of “rise and fall.” Like many historical metaphors, this one does capture aspects of the story, but has become so shopworn that it hides more than it illuminates. The Americanization of Narcissism offers a refreshingly different approach. By excavating the many facets of a key word in both clinical writing and social criticism, Lunbeck shows that the history of psychoanalysis is more complex, and of more lasting relevance than the “rise and fall” accounts have allowed.
Jonathan Sadowsky is Theodore Castele Professor of Medical History at Case Western Reserve University. He is a historian of psychiatry whose main interests include colonial psychiatry in Africa, the history of convulsive treatments in the United States, and the history of psychoanalysis. His book on electroconvulsive therapy in America is forthcoming from Routledge.
Alimentary Uncertainties: From Contested Evidence to Policy — A special issue of BioSocieities by Aaron Seaman
The June 2015 issue of BioSocieties is a special issue guest edited by Emilia Sanabria and Emily Yates-Doerr, entitled “Alimentary uncertainties: From contested evidence to policy.” The issue comprises, in addition to the introduction, seven articles and two responding commentaries (links and titles/abstracts below). As Sanabria and Yates-Doerr write in their eponymous introduction
This special issue examines specific uncertainties raised by the feedbacks between the production of evidence and the making of policy in the domain of the alimentary sciences. We employ the term ‘aliment’ – that which nourishes the body – to reinvigorate a valuable but underutilized concept, enriching the vocabulary with which to address the recent proliferation of scientific examinations of the relation between food and health. Much of the existing literature is focused on the United States, showing how popular American discourses of nutrition have produced ‘hegemonic nutrition’ – a form of nutrition that deploys a language of science to standardize food/body relationships, disregarding the cultural contexts in which food is eaten (Hayes-Conroy and Hayes-Conroy, 2013). This collection departs from academic critique of the moral injunctions around food and health. Disease is doubtlessly produced when intimate acts of eating become the object of normative discourses, but the seven articles collected here suggest that if nutrition has hegemonic force, it is also a fractured, contingent field fraught with ambiguity and instability. If ‘modern nutrition’ has been quintessentially American in its ideals (cf. Guthman, 2014), we illustrate how scientific interest in the relation between food and health takes shape in Guatemala, South Africa, India, Hong Kong, the United Kingdom and France. We point to the paradigmatic uncertainty of the ‘sciences’ of the aliment and suggest that the aim of better nourishment shifts what science can claim to do and know.
Sensorial pedagogies, hungry fat cells and the limits of nutritional health education (open access)
This article examines the way the category of ‘the sensorial’ is mobilised across obesity research and care practices for overweight persons in France. The ‘natural’ body is understood to have developed mechanisms that motivate eaters to seek out energy-dense foods, a hardwiring that is maladaptive in today’s plethoric food environment. The article analyses the feedback models mobilised in scientific literature on the neuroendocrine processes regulating appetite. The analysis of how ‘the sensorial’ is studied and used to treat patients provides a vantage point onto the ways foods and bodies transform each other. Recent findings show that fat cells influence metabolism by secreting hormones, revealing that eaters are affected by the materiality of the foods they ingest. ‘The sensorial’ functions as a regulator in the feedback mechanisms where social norms regulating foodscapes become enfolded in the molecular processes that control appetite regulation. The article traces the work that the category of ‘the sensorial’ does as it flows through the loops and feedbacks between scientific evidence, policy and care. It examines the way pleasure and the sensations of eaters are increasingly foregrounded in French nutritional health promotion strategies in a context where informing eaters is increasingly deemed ineffective.
The article seeks to develop an account of the transformation of hunger and the structural violence of Apartheid into biopolitical concerns in South Africa from 1994 to 2010. I argue that the post-Apartheid politics of hunger and nutrition make no sense in South Africa outside of the politics of HIV, and that those histories of hunger and malnutrition have been radically transformed during this period such that it is now not possible to think about nutrition beyond or apart from biomedicalised knowledge of nutrition, immune system functioning and the gut. I show that the gastrointestinal tract has emerged as a central object of concern for the making of credible scientific advances, and at the same time for articulating the symbolic importance of the belly in the development of a biopolitical concern with food, nutrition and HIV. By focusing on one locale in KwaZulu-Natal, South Africa, in which hunger, diet, nutrition and food are conjoined with immune system functioning, treatment regimes and bodily capacity, the article parses out the matters of concern that have produced nutrition, the immune system and the gut as specific nodes of action and enquiry within the particularities of post-Apartheid, ‘epidemic’ South Africa.
This article compares the treatment of living beings (unvaccinated chickens and infected cells) considered as sentinel devices in a farm and in a lab in Hong Kong. Sentinel devices are defined as living beings posted on a boundary from which they send signals of invisible threats. The ethnography looks at how they transform differences between ordinary lives and lives exposed, between good death and bad death, through the practices of those who feed them. In farms and labs exposed to Avian Influenza viruses, the logic of biosecurity intersects with a logic of care, blurring the distinction between self and other, friend and enemy through aesthetic judgments concerning what is a ‘good death’. Metabolism and immunity are redefined when sentinels are fed to produce clear signals of the mutations of viruses.
This article is about food safety and food adulteration in urban India. Situated at the relational interface of foods and their contaminants, it considers ways of thinking and acting at the porous boundaries between bodies and environments. The article details how people attempt to detect where food and its adulteration begins and ends, through ethnographic reflection on several events of adulteration in Mumbai and a context of changing food safety policies in India. The article develops the concept of reliability as a lens onto food politics different than one delimited strictly in terms of consumerism. Reliability refracts the politics of difference at work in times of toxic food environments, in contemporary India and elsewhere, wherein tensions between poison and nourishment take on renewed charges. This framework recasts a choice-focused approach to thinking about food safety by centralizing how living with harm – rather than ridding the world of it, element by element – is what is at stake.
Materiality matters: Blurred boundaries and the domestication of functional foods (open access)
Kate Weiner and Catherine Will
Previous scholarship on novel foods, including functional foods, has suggested that they are difficult to categorise for both regulators and users. It is argued that they blur the boundary between ‘food’ and ‘drug’ and that uncertainties about the products create ‘experimental’ or ‘restless’ approaches to consumption. We investigate these uncertainties drawing on data about the use of functional foods containing phytosterols, which are licensed for sale in the EU for people wishing to reduce their cholesterol. We start from an interest in the products as material objects and their incorporation into everyday practices. We consider the scripts encoded in the physical form of the products through their regulation, production and packaging and find that these scripts shape but do not determine their use. The domestication of phytosterols involves bundling the products together with other objects (pills, supplements, foodstuffs). Considering their incorporation into different systems of objects offers new understandings of the products as foods or drugs. In their accounts of their practices, consumers appear to be relatively untroubled by uncertainties about the character of the products. We conclude that attending to materials and practices offers a productive way to open up and interrogate the idea of categorical uncertainties surrounding new food products.
Over a hundred factors are associated with obesity, and relationships among most of them were formalised in the Foresight Obesity Systems Map (FOSM) in 2007. This was a characterisation of population obesity in the United Kingdom at that time. The Foresight programme of different projects aimed to harness scientific evidence to the making of policy in a range of areas, obesity among them. An objective of this particular Foresight project was to ‘de-silo’ obesity policy by bringing together very diverse stakeholders, and to develop directives that recruited ‘joined-up’ government to the cause of obesity control. The Foresight process more generally was used to offer science-based solutions to complex problems. Obesity entered the sphere of complex problems that defied resolution that the Labour administration sought to deal with, along with inequality and climate change among others. The take-home message of the Foresight Obesities project was that the causes of obesity are embedded in an extremely complex biological system, set within an equally complex societal framework. While different forms of complexity have been argued for, the type of complexity favoured by Foresight was the one most commonly embraced, romantic, or upward-looking complexity that can be ordered at a more macro-level. This article describes the development of the FOSM and the process through which obesity policy and obesity research were reframed as complex problems.
Intervals of confidence: Uncertain accounts of global hunger
Global health policy experts tend to organize hunger through scales of ‘the individual’, ‘the community’ and ‘the global’. This organization configures hunger as a discrete, measurable object to be scaled up or down with mathematical certainty. This article offers a counter to this approach, using ethnographic cases to illustrate how the calculated referent of ‘hunger’ does not hold stable. In the highlands of Guatemala, where obesity has become a matter of concern, many people treated hunger as a sensation connected to family and history. For doctors working in the region, hunger was determined through body mass indices and global risk statistics. For global health experts it was different still, operating as an indicator derived from agricultural and population data. I draw these different, yet connected, versions of hunger together to explore dilemmas of scaling an object that is not solid but is made and unmade variously. This allows me to illustrate that global hunger is not a summation of hunger in the world, but its own version of hunger. I further suggest that ‘multi-object ethnography’, which allows for the persistence of uncertainty, can help to develop policy responses to hunger(s) that will, in some cases, be more appropriate and effective than scale-based evaluation.
Food is love: And so, what then?
Elizabeth F.S. Roberts
So what do we, as in progressive social scientists mostly based in the still relatively well-provisioned North, want? What is our sense of the good? My sense is that even as we espouse the virtues of entangled uncertainty as an analytic mode, we want uncertainty and entanglement to remain voluntary analytics not a constantly lived experience. For instance, while we are pretty certain getting the lead out of catalytic convertors was for the good, there is now uncertainty about one of the crowning public health achievements of the twentieth century, fluoridating the water supply in many industrialized nations. Now bodies might have too much. We want stable resources to be allocated to find out how much is actually too much, which will allow us to “cut complexities down to manageable size” (Sanabria and Yates-Doerr, this issue). We want the certainty and the separations that resources make possible, that allow for jurisdiction and responsibility towards specialized realms. The stability that black boxes provide can be very relaxing. They let us get things done. We would like public health officials who have the resources to do their jobs, who can call out NAFTA, and who don’t have to work for NGOs or Microsoft on the side. We want resources for clean water to be in place through recognizable, certain and stable means. We want bio-power. We want food to be made of both love and calories, not only love.
Being and eating: Losing grip on the equation
[A]s these essays show, there is the uncomfortable sense in our reflexively biopolitical times that not only has the equation between eating and being ceased to function, it itself had a role in producing contemporary ills (Collier and Lakoff, 2015). The nutritional chemistry of the nineteenth century and the commodified rationalities of the twentieth have certainly contributed to making contemporary bodies what they are, but many aspects of that contribution were unexpected and unwanted. Hunger and obesity are complex and devastating diachronic legacies of intercalating starvation and abundance: the history of nutrition and therefore nutrition science are enfolded in the very bodies that science and policy are attempting to control, as Ulijaszek and Yates-Doerr point toward in this issue. In trying to figure out what went wrong, the nice equivalencies of you are what you eat begin to sound off, as it becomes harder to reckon both sides of the equation – ‘you’ and ‘what you eat’ are difficult to define, if you contain both generations and multitudes, and what you eat turns out to not be easily equivalent at all to how hungry or sick you are or are not, and to itself contain worlds of industry and production.
This post is part of our new series, The Ethnographic Case.
One doctor, seven medical students and an anthropologist crowd into the patient’s very small hospital room. The doctor places his briefcase next to the bed, introduces himself to the patient and turns to his students. Whose turn to do a respiratory examination? Mumbling, shuffling, staring at shoes but soon a volunteer. First inspection, palpation and then the tricky techniques of percussion and auscultation; that is, tapping out body sounds one finger on another, and listening to the patient’s breathing through a stethoscope. The student isn’t sure if he is finding a dull note when he percusses one part of the patient’s back, as she hunches awkwardly forward in her cotton gown. The other students are watching and sneaking a few taps on their own chests, practicing their swing. How to tell if the note is dull? The doctor teaches the students a trick, while the patient looks on, listening in to the lesson too. The students should tap their own thighs, for that is a dull sound and a dull feel. You always have yourself as a gold standard, he tells them; use this! Excuse yourself to the toilet if you have to, tap away and remember that sensation.Anna Harris Body Topology
I observed many instances of self-percussion during my fieldwork researching how listening to sounds is learned, taught and practiced in a Melbourne medical school and it’s connected teaching hospital. The students were sounding out their own bodies; practicing the technique while also feeling “dull” or “resonant” on their own body. This knowledge was then to be applied during their examination of patients, where dullness or resonance in the “wrong” place or in uneven distribution, may indicate disease. Tom Rice (2013) also observed similar acts of self-listening in a London hospital, in the form of auto-auscultation. The first sounds a medical student listens to, Rice found, when they buy their first stethoscope, are often their own. What does it mean to use your body as a case for others? Medical students (and indeed many other practitioners of the body) do this all the time. It is a common way of learning new bodily skills and bodily knowledge.
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.
Doctors and medical students are not the only ones listening to their own bodily sounds in medical settings. Patients do too, although this is regarded as a pathological rather than pedagogical event. In the medical literature, self-listening is referred to as autophony, a word that could also be used to describe what the medical students are doing too. In the medical case however, autophony is an “abnormality”, described as a form of “hyper-perception”. For most people, sounds from inside the body are “screened out”, so as to make the outside world audible. For patients with medical conditions inducing the effect of autophony (such as a small crack in the bone protecting the delicate semicircular canals for example), the torrent of internal sounds, necessarily inaudible to most of us, can be heard and are dramatically amplified.
Patients may be able to hear their eyeballs moving from left to right, the pulsing of blood or the gurgles of digestion. I first heard of a patient suffering from autophony during my fieldwork, from one of the nurses with whom I spent time. Curiosity led me to the medical literature, where I found the condition documented largely through case studies.
Take for example, two case reports in the Journal of Neurology, Neurosurgery and Psychiatry which describe the “unusual but fascinating” symptoms of autophony (Albuquerque and Bronstein 2004). The first case is a 53 year old woman who presents with a tendency to stumble to the left side of her body. Questions about tinnitus reveal that the patient describes sounds of increasing pitch when she rolls her eyes upwards and decreasing pitch when she rolls then down. Case 1 is noted as saying she could play a tune with her eyes. Case 2 is a 32 year old man, also falling to the left, this time when he hears loud sounds such as a telephone ringing. He can hear his own heart beats, bone taps and footsteps. Case 2 is reported to complain of “a soft low pitched sound in his left ear ‘rather like moving a hard-pressed finger across a clean, wet china dinner plate’ when he moved his eyes” (Albuquerque and Bronstein, p1364).
For these cases/patients, inner movements of tendons stretching and blood pumping are constantly heard. Their descriptions of these sounds are unusual, which make them such nice case studies. In medical cases the intriguing and fascinating are plucked from the mundane. Something is learned from the unusual. In ethnographic cases, it is often the other way around and mundane acts such as tapping on your chest are made more intriguing and fascinating through description and situation within other stories.
Whether rare or mundane, the same question arises for both medical and ethnographic cases, as it does for students tapping out their own bodies: How to move from one case to others?
To move from the case study to others, interpretations need to be made. For a case to become meaningful in other sites, similarities, as well as differences, are found and compared. A medical student compares sounds from their thigh with those tapped on a patient’s back. A clinician reading the medical journals compares case studies with patients in her clinic. An anthropologist compares their ethnographic findings with other accounts in the literature: Melbourne hospitals compared to London hospitals. These cases, like their brief and suit versions, travel. As Annemarie Mol has pointed out in the previous post in this Casestudies series, cases do not always transport knowledge easily though; interpretation takes work.
What might be taken from these cases of autophony in medicine, of students and patients listening to their bodily sounds, presented here side-by-side? They might teach us that through acts of self-listening bodily borders are crossed, blurring inside/outside and in the process, not only does one’s own vitality, amazingly, at times horrifyingly, emerge, but the possibility of other’s too. Patients suffering from autophony, like tinnitus, might try to pay less attention to these sounds. The medical student is taught to be aware, to listen to their own body, a fleshy textbook they carry with them at all times, so as to listen better to the bodies of their patients. And the anthropologist? How do we listen in? And when we do, what does it do to our stories of the world when we use our own sensing, moving, living bodies as a case for others?
Anna Harris studies the sensory, bodily, material practices entailed in medical work. She has conducted ethnographic research concerning migrant doctors, genetic testing, sound in hospitals and is currently establishing a project on technologies in medical education. She blogs regularly at www.pneumaticpost.blogspot.com. This post is based on research that was conducted as part of a Dutch (NWO, Vici) funded research project entitled “Sonic Skills: Sound and Listening in the Development of Science, Technology, Medicine (1920–now)” led by Karin Bijsterveld at Maastricht University, the Netherlands.
Albuquerque, W. and A. Bronstein (2004) ‘Doctor, I can hear my eyes’: Report of two cases with different mechanisms. Journal of Neurology, Neurosurgery and Psychiatry 75: 1363 – 1364.
Rice, T. (2013) Hearing and the Hospital: Sound, Listening, Knowledge and Experience. Canon Pyon: Sean Kingston Publishing.
María and I finished our three hours together with a blood spot and a hug. It was an extra long hug, and I couldn’t be sure if it was her or me who lingered. I was three-fourths of the way through my dissertation research at one of Chicago’s oldest public hospital clinics and it had been an intense period. María was one of 28 women who shared with me a devastating narrative of childhood sexual abuse. But today, María was one of two. Even more, these interviews were back-to-back, leading to a seven-hour stretch of interviewing. To say the least, I was exhausted.
I packed up my computer after I finished my field notes (conducted immediately after each interview), and placed my measuring tape, audio-recorder, and dried blood spot—protected in a plastic zip-lock—carefully into my satchel. I picked up my portable scale that I dutifully carried across the hospital each night to tuck away in my office, and I locked the door of the private room in the general medicine clinic where I conducted many interviews. I walked to the elevator and took it down a level to the pharmacy. Each day I savored those minutes as I walked through the pharmacy, filled with people from all walks of life, and most days I ran into someone I knew and conversed with them. These ethnographic moments sometimes gave me the best insight. Yet, that day I was too exhausted for more conversation. I kept my head down and carried my satchel and scale right out the door, crossed the road, entered the hospital, and swerved through the halls until I reached my adjacent office building. I swiped my security card, entered another elevator, and pressed the button for the fourteenth floor. As the door closed, I leaned my back against the wall of the elevator and let out a deep sigh.
The door opened on the fourteenth floor and I rushed to my office where my dedicated mentor still sat at six o’clock, talking on the phone with the loved one of a patient. I set down my gear and heard the click of the phone. I poked my head into her office and she motioned for me to sit down. I collapsed into the chair. She looked at me, and said, “Tough day, huh?”
For the next half-hour we discussed the two Mexican immigrant women I met and spent seven hours interviewing. That day had been one of the most difficult, where one woman was sexually abused by a relative and another was gang raped and left to die near her village in southern Mexico. These were trying interviews and my mentor knew that these women’s narratives were difficult to receive and process. I described the stories to my mentor, a researcher and internal medicine physician in that public hospital clinic, and she said, “I never knew my patients experienced so much suffering. We need to share these stories with the clinic staff.”
Eventually, I published my mixed methods research in a book entitled Syndemic Suffering as well as peer-reviewed articles, and the women’s stories were communicated to the clinic staff at Grand Rounds of the county hospital. In doing so, we believe that the sensitive nature of our findings were communicated effectively both with health care providers and associated research bodies. However, the multiple steps that brought me to that day of interviewing were fundamental for shaping how the mixed ethnographic and survey interviews—complemented with psychiatric inventories, anthropometric measures, and dried blood spots—were designed, implemented, and analyzed. In the following essay, I will explain the multiple waves of data collection we orchestrated – from foundational exploratory focus groups and ethnographic interviews to a large-scale epidemiological survey and finally my mixed-methods dissertation research. Then, I will offer some advice about how to effectively carry out and communicate mixed-methods anthropological research with an audience of mixed company. But first let me begin with our focus groups and exploratory ethnographic research in 2006.
“Have you heard of susto?” my mentor inquired. “Susto? I think it means fright, or being frightened. [Pause] Why?” My mentor continued, “Some researchers have found that people use fright to make sense of their diabetes. Some of my Mexican patients connect susto with their diabetes. I want to include this in our study.” With this prompt I began conducting literature reviews on culture, immigration, and community medicine, and then did more specialized searches for literature on Mexican beliefs, susto, diabetes, and acculturation. Over the next several months we orchestrated seventeen focus groups in a multiethnic sample, and I conducted 26 ethnographic interviews with Mexican immigrants with type 2 diabetes under the complementary mentorship of my PhD advisor. I benefited a great deal from collaborating with a physician-researcher and medical anthropologist, receiving mentoring from both the clinical and anthropological angles of the research.
Pairing multiple levels of inquiry enabled us to see through our assumptions and unveiled a clearer frame of our interlocutors’ lives, priorities, and needs. The focus group data were published in a health education journal, but the chief utility of these data was to develop a survey administered to 800 patients with diabetes. This survey provided a robust understanding of the population-level trends around belief, healthcare access, and diabetes care. However, the rich ethnographic data revealed individual-level social and health problems that converged and indicated that, although initially we were concerned with cultural idioms of emotional distress like susto and coraje, it was the social problems and structural barriers that were at the center of our interlocutors’ lives. Rooted in syndemics theory, I coined the phenomenon the VIDDA Syndemic, as the research illustrated how social and health problems clustered together in women’s lives. VIDDA stands for structural violence, immigration, depression, diabetes, and abuse; these five factors were described in depth in women’s narratives and associated in multivariate regression analyses to demonstrate interdependence. I argue in my book Syndemic Suffering that the factors in VIDDA come together as a biofeedback loop where social problems fuel medical problems, which further complicate social and economic experiences.
In what remains, I offer three key points about the research design used for that mixed-methods study that demonstrate ideal methods for speaking to implementers in medicine and public health. First, speaking across disciplines requires that we renegotiate what is a suitable “n”. In my research I conducted analyses of a variety of data collected among 121 low-income Mexican immigrant women with diabetes in Chicago, including life history narratives, surveys, psychiatric interviews, and biomarker data. Although laborious to collect so many lengthy interviews, the “n” gave me power to speak about narrative trends and associated health outcomes. Second, consider analyzing ethnographic data in qualitative and quantitative ways. Breaking down qualitative data into measureable entities makes it easier for practitioners less familiar with qualitative research to digest and apply. Then, with a large enough “n” you can transport qualitative data into quantitative analyses, bringing narrative into dialogue with health markers. Third, accept that mixed methodological research may require that you analyze, publish, and communicate your work in two or more venues. For tenure in an anthropology department, you need to publish in high-level anthropological journals. But you also need to publish your research in journals and other venues accessible and relevant to applied researchers, clinicians, and policy-makers to ensure research uptake, such as blogs and other online forums (such as the OpED Project at Huffington Post).
Let me provide some examples of how I bring ethnographic approaches into dialogue with colleagues in medicine and public health. I conducted my dissertation research around issues of trauma, memory, mental health, and chronic illness among Mexican immigrants seeking diabetes care at a public hospital in Chicago. To meet competing demands from my PhD committee and clinicians at the county hospital, I triangulated in depth life history narrative interviews with surveys about social and economic experiences, subjective measures of stress, psychiatric inventories, and blood samples. However, instead of conducting ethnographic interviews with a smaller number of people repeated over a lengthy period of engagement, my research incorporated lengthier inquiries during a one-stop interview. Indeed, the one-stop qualitative interview is more common in public health; however, I felt that the in depth interview – which took as short as two and as long as six hours – provided a unique perspective and got to, in this case, the heart of the matter. Because the interview built upon findings from a small ethnographic project, focus group study, and survey with hundreds of participants, this final “wave” of data collection focused on tying up loose ends and further probing into queries left unanswered.
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. For instance, Rosie, a protagonist in my book, Syndemic Suffering, connected a traumatic experience from childhood with the onset of chronic illness in later life. Despite 40 years of relative success, including a master’s degree and high-level position in the education field, she prioritized the trauma of her childhood with the trauma of her adulthood as the most significant periods of her life. Rosie’s story illustrates the depth through which she remembers, organizes, and makes meaning of her life experiences. Importantly, personal narrative accounts are subjective and should be considered in light of the contemporary time and place through which an interlocutor shares her or his story (see also Mendenhall 2012). But the distinct order through which she shares her story provides insight into cultural, social, and psychological factors that may play a fundamental role in the course of one’s life.
Beyond narrative analysis, I quantify my interlocutors’ responses into an Excel spreadsheet that allows me to input them into STATA. Because the “n” was large enough (although this was debated by my PhD committee), I could communicate the qualitative data into quantitative language. This means not only publishing emergent themes in tables and demonstrating the “frequency” in which they were communicated across women’s life stories, but also inputting them into regression analyses to see if certain narratively generated subjective stressors were associated with mental and physical health outcomes. Such an approach is particularly relevant for work with Latin American immigrant populations, as demonstrated by Susan Weller, Roberta Baer and colleagues. They have made a strong argument for the association between reporting emotional idioms of distress, including susto and nervios and biomedical measures of distress such as depression and anxiety. Others such as Lesley Jo Weaver and Bonnie Kaiser, in India and Haiti respectively, have combined open-ended and structured interviewing to develop instruments to assess mental health in culturally relevant ways. Indeed, by examining ethnographically-driven markers of distress along with biomedical markers, we can make a stronger case for the need to provide mental health services for populations who are underserved or less visible to the state. Such examples exemplify how ethnographic approaches can become more visible (or brashly, “measureable” and “interpretable”) for biomedical and public health audiences.
Such approaches matter not only to make our work clearly stand out to other communities of practice but also to foster awareness among funders outside of the social sciences. With looming budget cuts to the social sciences and a difficult job market, medical anthropologists must gravitate to research funding and jobs across disciplines. Despite historical lack of funding for ethnographic work, by communicating our research in new ways, and with new “outcomes,” we can bring funders and policy-makers into conversation with the proponents of ethnographic projects. To ensure that our research becomes part of the fabric of public health, we need to flood application pools for public health projects with innovative, interdisciplinary research programs. This might be a multi-layered project, with wave one being an in depth ethnographic study, and wave two a more “measureable” or larger-scale project; it may also be the application and/or extrapolation of a previous ethnographic project. Moreover, our ethnographic work may be situated in collaborative multi-disciplinary teams. By making our research digestible by a wide audience, we ensure that our research becomes integrated into public health paradigms. (Until, of course, we change the culture of power, politics, and privilege in public health research and policy so that ethnographers are given a privileged seat at the table). This is important not only to ensure the relevance and growth of our field of medical anthropology but also to make an impact in the lives of the people with whom we work.
Weaver LJ, Kaiser B. (2014). “Developing and Testing Locally Derived Mental Health Scales Examples from North India and Haiti.” Field Methods, online Sept 25.
Weller S, Baer R, Garcia de Alba Garcia J, Salcedo Rocha A. (2008). “Susto and nervios: expressions for stress and depression.” Culture, Medicine and Psychiatry. 32(3):406-20.
Authors Relevant Publications (Referenced)
Mendenhall E. (2012). Syndemic Suffering: Social Distress, Depression, and Diabetes among Mexican Immigrant Women. Left Coast Press: Walnut Creek, CA.
Mendenhall E, Jacobs EA. (2012). “Interpersonal Abuse and Depression among Mexican Immigrant Women with Type 2 Diabetes.” Culture, Medicine and Psychiatry 36(1): 136-153.
Mendenhall E, Fernandez A, Adler N, Jacobs EA. (2012). “Susto, Coraje, and Abuse: Depression and Beliefs about Diabetes.” Culture, Medicine and Psychiatry 36(3) 480-492.
Mendenhall E, Seligman R, Fernandez A, Jacobs EA. (2010). “Speaking through diabetes: Rethinking the significance of lay discourses on diabetes.” Medical Anthropology Quarterly 24(2): 220-239.
Lynch E, Fernandez A, Lighthouse N, Mendenhall E, Jacobs EA. (2012). “Concepts of diabetes self-management in Mexican American and African American low-income patients with diabetes.” Health Education Research 27(5): 814-24.
Emily Mendenhall, PhD, MPH, is an Assistant Professor of Global Health in the Science, Technology, and International Affairs (STIA) Program at Georgetown University’s School of Foreign Service. Dr. Mendenhall has conducted cross-cultural research on the syndemics of poverty, depression, and diabetes in vulnerable populations residing in urban India, Kenya, South Africa, and the United States. Her first book, published in 2012, Syndemic Suffering: Social Distress, Depression, and Diabetes among Mexican Immigrant Women, was the first book-length analysis of a syndemic and provides the theoretical foundation for her cross-cultural research. Currently Dr. Mendenhall is writing a second book that brings together more than two-dozen articles on her research of syndemics in cross-cultural context.
Irina Sirotkina’s Shestoe chuvstvo avangarda: Tanets, dvizhenie, kinesteziia v zhizni poetov i khudozhnikov by Michael Gordin
By Irina Sirotkina
Izd. Evropeiskogo universiteta v Sankt-Peterburge, 2014, 280 pages
There are few topics in Russian history more appealing and perplexing than the avant-garde efflorescence of the first three decades of the twentieth century. The appeal is obvious, and the reason why so many historians (primarily of art) have been driven to explain it: the poetry, painting, music, photography are all stunning, and shockingly generative even today. The perplexity comes next: how is one supposed to account for this flourishing, which corresponds only imprecisely with both the political revolutions in Russia and related modernist trends abroad? For every master narrative someone puts forth, the exceptions swallow the rule. If we are not going to have a single dominant explanation, therefore, we need as many — and as varied — narrative through-lines, guided paths that encompass some of the heterogeneity without striving to reduce it to a simplistic single cause.
It is in this spirit that Irina Sirotkina advances her new book, Shestoe chuvstvo avangard: Tanets, dvizhenie, kinesteziia v zhizni poetov i khudozhnikov (The Avant-garde’s Sixth Sense: Dance, Movement, Kinesthesia in the Life of Poets and Artists). The book is engagingly written and often revelatory, with many of its surprises stemming from the original approach: considering the avant-garde through the lens of an alternative epistemology. The choice of framing several through-lines around questions in the philosophy of knowledge seems natural to Sirotkina, who is one of the most talented historians of science writing in Russian today. Armed with extensive training in both Russia and the West, she specializes in the history of the human and mind sciences, and is the author of numerous articles in English and Russian. She is perhaps best known outside of Russia for her fascinating monograph, Diagnosing Literary Genius: A Cultural History of Psychiatry in Russia, 1880-1930, which came out with Johns Hopkins University Press in 2002. Since then, she has persisted in thinking historically about Russian theories of the mind-body relationship, expanded to include extensive attention to the arts, especially dance. This was the subject of her 2011 book, Svobodnoe dvizhenie i plasticheskii tanets v Rossii (Free Movement and Plastic Dance in Russia), published by Novoe Literaturnoe Obozrenie in Moscow.
The most striking feature of the new monograph is Sirotkina’s presentation of the avant-garde — only a segment, to be sure, but a significant subset at that — through dance, using it as an entry point to a host of other productions ranging from aesthetic manifestoes to futurist poetry. Even just at the straightforward level of a run through a complicated set of personalities and movements, dance proves an inspired choice. Sirotkina’s account shows us transnational connections, with the prominent role of Isadora Duncan as an inspiration and also flashpoint for criticism (throughout, but especially Chapter 3); fads and oscillations between avant-garde and kitsch with the foxtrot and tango crazes (140, 147); a tremendous amount of enthusiasm for dance and movement by leading writers, including Andrei Bely (Chapter 3) and Vladimir Maiakovskii (Chapter 5), painters such as Vasilii Kandinskii (57-58), as well as important theorists such as the four-dimensionalist, P. D. Uspenskii (Chapter 4); and a creative resurrection of invented and actual traditions, as in the “Heptachor (Гептахор),” a group of graduates of the Bestuzhevskii higher education courses for women, under the inspiration of F. F. Zelinskii, who participated in the cultural enthusiasm for ancient Greece, a “Russian Hellas” (Chapter 1).
Some of the surprises of Sirotkina’s account come from understating or displacing particular landmarks of the movement. For example, Vsevolod Meyerhold’s “biomechanics” is here integrated as a subsidiary story within a broader context of a culture of movement (156-167). As another instance, rather marginal here is the emerging role of the Soviet state in these developments, a point that has been highlighted in much of the recent scholarship on the avant-garde. Sirotkina is interested in demonstrating other connections, and though we meet the Commissar of Enlightenment, Anatolii Lunacharskii (45), he is treated as one of a large cast of movers (literally) in this choreographic kaleidoscope, as is Lenin’s interest in rational biomechanics (162). Rather more attention is devoted to the scientific experiments conducted by professionals on topics of motion, such as the work of psychologist A. N. Leont’ev (Chapter 2). This is riveting material, and it gives a sense of continuity among diverse groups and diverse artistic media, while not reducing any of them to a simplistic obsession with bodily motion.
The central argument of this book, however, is not just that dance mattered, and mattered much more widely than has perhaps been sufficiently recognized. Rather, Sirotkina’s intention is to use dance as a window toward a reinterpretation of the avant-garde, as the first line of the book states clearly: “The avant-garde is not only an artistic project, but an anthropological one, a project in the re-cognition of the person, a renovation of his sensitivity” (7). “Anthropological” is meant here in the Kantian sense of the late Enlightenment, as the (philosophical) science of understanding the nature of humanity. Reflect on the title of this book and you will see Sirotkina’s strategy: dance is central because bodily movement, “muscular feeling,” was considered by some members of the avant-garde as a sixth sense (in contradistinction to other sixth senses across the centuries, such as sexual appetite or telepathy); the senses are the privileged entry points for an empiricist epistemology; therefore, we can use the explicit theorizing and actual artwork of the avant-garde to trace what kind of knowledge this additional sense brought to bear.
There are two possible interpretations of this book. On the one hand, Sirotkina might be presenting the implicit epistemology of a core set of avant-garde thinkers and artists — that is, articulating a philosophy that they would have assented to, largely in these terms. The terminology seems to work against this, however. As she notes, “kinesthesia,” an important category, seemingly only entered the dictionary of the Russian language in 1982, although it was present abroad in the twentieth century. That said, nineteenth-century physiologist I. M. Sechenov discussed the possibilities of thinking through motion long before there was an explicit term for it. (Sirotkina discusses this history and the various synonyms for kinesthesia on 18-22.) The other interpretation of Sirotkina’s project, and I believe this is what is intended, is as more of an analytic approach, one which helps us to make sense of the various epistemological gestures of the Russian art world of this era, but one that is more useful for deepening our understanding rather than reflecting what the historical figures would themselves have believed. Her reflections on Emmanuel Levinas, Maurice Merleau-Ponty, and Jacques Derrida (134-135) point more toward this reading. Sirotkina is not entirely clear on which she intends, and it is possible that she hopes for both, blending emic and etic in one thorough analysis.
What is the motivation for such an account? “In the traditional epistemological hierarchy, however,” Sirotkina writes, “the relationship between the two types of knowledge are asymmetric: knowing how or what is called practical, technological, bodily knowledge is allocated a lower status, appears subordinate to propositional, theoretical, formalized knowledge” (177). By contrast, “[e]verything written in the book is based on a deep conviction in that besides conceptual thinking there exists also thinking in movements, ‘muscular thinking’” (11), which has particular characteristics: “As we recall, the important property of muscular feeling and haptics is their direct, unmediated character.[…] Thanks to this feeling a unique relationship of closeness, of contact with another person and of worlds is created” (134).
A somewhat surprising result of this attention to the physical is the downplaying of the visual. There are plenty of visual materials in the book — over twenty pages at the end of portraits, photographs of dance scenes, caricatures, and book covers — but the placement of these at the back instead of in the context of their discussion serves to marginalize sight in this narrative that privileges motion. This might be the choice of the publisher or a deliberate strategy to force the reader away from the common overvaluation of one of the five traditional senses.
Sirotkin’s explicit epistemology, surely the point of the book, is at times very persuasive, although the emic/etic tension is such that some of the examples in the book connect much more strongly with her approach while others, while engaging narratives concerning dance and the avant-garde, have less theoretical purchase. It is clear, however, that Sirotkina does not intend this book to be the final articulation of a haptic epistemology, nor to be the definitive book on dance as a sixth sense in the Russian avant-garde, but rather the opening of a perspective and — hopefully — a conversation about the integration of philosophy into the arts at a particular historical moment, and how that could help us think through creativity in the present day.
Michael D. Gordin is the Rosengarten Professor of Modern and Contemporary History at Princeton University, where he teaches the history of modern science. He specializes in the history of the physical sciences in North America and Europe, with a particular emphasis on Russia and the Soviet Union. He is the author of five books, including most recently Scientific Babel: How Science Was Done Before and After Global English (University of Chicago Press, 2015).
I am lying in bed. It is 4 am. The TV is flickering. I am listening for it, I am waiting for it. Next to me a gentle tossing. Time for suctioning? I go over to the other side of the bed so we can have eye contact and ask my mother if it is time for suctioning. She closes her eyes for a second, indicating that yes, that’s what she wants. I help her place the suctioning tube in her mouth and I switch on the machine. Whirrrr. We maintain eye contact. Whirrrr. Five minutes later she nods with her eyes that it’s enough. I switch off the machine and we prepare to go to sleep again. (Personal diary, Autumn 2010)
My mother, Vagelio, was diagnosed with a fast progressing subtype of motor neuron disease (MND), also known as amyotrophic lateral sclerosis, in the fall of 2008. She showed the first signs of dysarthria in early 2008. Soon after, the rest of her body became weaker and her movements slower. The first function to be affected was her speech and then her arms became weaker, followed by her breathing muscles and legs. Dysphagia, caused by increasing weakness in the muscles involved in chewing and swallowing, made eating difficult. Saliva and food would pool in the mouth, necessitating regular suctioning. She could hold a pen and type on a mobile phone to communicate until a couple of months before she died in late 2010. I have saved thousands of text messages that we exchanged in the years of silence. It happened so gradually, yet so fast, that I cannot remember the last time I heard her voice. Perhaps it was in a phone call when, unable to understand what she was saying, I had asked her to repeat a word a couple of times. Or perhaps it was when she last visited me in the United Kingdom and I was translating back and forth between her and my then partner.
With my mother’s speech gone and her arms getting weaker, soon to be followed by most of her facial muscles, and then her breathing muscles and leg musculature, we (my father, brother, and I) were all at a loss. Family and friends were there to help, each in their own way, but we were all struggling with one big question, particularly my mother and the immediate family: “What now? What can be done now to make life better?” As my mother’s condition progressed, we had to constantly adjust and know how much help she needed: giving any more would take away the physical independence she still had; giving less would not be adequate. We each had our own understanding of the situation and our own ways of dealing with it and constant negotiations were necessary.
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. In Vagelio’s inhabitable word, ideas about pathology and desire interacted to form what Jackson (2012) calls a home in the world. “A home in the world is a place where one can experience intersubjective life and feel recognized as a person” (Sakellariou, 2015b:7), rather than as a representative of a category, such as illness. Vagelio’s home in the world was a place that would allow her to enact her desires about how she wanted to live her life.
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.
Examining concrete acts of care and how these can lead to the creation of an inhabitable world touches upon questions of central importance in anthropology: What kind of an experience is illness? How do people live with illness? And how can this experience be explored when there is no voice left to tell the story? The narrative presented in this article was told through gestures, notes, gazes, and text messages and was performed through swerving, tossing, coughing, breathing, looking, pointing, and blinking. It was shared during long suctioning sessions in the evening, and while trying to find the best (quicker, so as not to remain without artificial ventilation for too long; not causing too much pressure on the neck; attentive to the weakened swallowing musculature) way of eating.
Creating a Way of Eating
The weakening of the muscles involved in chewing and swallowing made eating an increasingly laborious activity for Vagelio. Dysphagia started with difficulty drinking thin liquids such as water, leading to occasional choking episodes. It soon progressed to the point that food had to be of a uniformly smooth, soft, and relatively thick (but not too thick) consistency; i.e. blended or mashed. When dysphagia affects quality of life and nutritional intake, percutaneous endoscopic gastrostomy (PEG) is often recommended. A PEG is an opening through the abdominal wall and into the stomach through which people can receive food, water, and medication. It is standard practice in MND and can lead to improved nutrition. Vagelio’s desire was to keep her body intact, which meant no PEG, although PEG was recommended soon after diagnosis. This was a desire that could lead to malnutrition and perhaps to starvation.
As my mother’s condition progressed, my father, brother, and I had to help to create a way of eating. Eating can be a way to enact care and reconfigure human interactions (see for example Appadurai, 1981, and Mol, 2014), through practices that involve the preparation and consumption of food. By eating I refer both to eating as an activity and to food as a substance.
First, it was enough to help Vagelio cut her food in bite-size pieces. Then somebody had to carry her plate to the dining room. Later on, somebody had to always be there with her because of the fear of choking (I twice had to perform the Heimlich manoeuvre). When Vagelio could no longer eat solid food, initially she drank a high-energy food supplement into which she mixed other supplements. Later on somebody else had to do the mixing. Then, as the muscles in her forearms and her hands became weaker, the help needed was about positioning the mug in her hands. When her arm and shoulder musculature were too weak to help her lift her arms so that she could reach her mouth, we would first help Vagelio flex her forearms and slightly elevate her arms and then place the mug in her hands. Weakened neck musculature later on meant that two people were needed during meal times; one to help with the mug and positioning of her arms and forearms and another to protect her head by holding one hand behind it to prevent it from suddenly falling backwards (collars and chairs with neck support were not comfortable or suitable).
Vagelio constructed hope not through the medical imaginary, but through the ritualisation of technologies of self-care which seek to locate illness and direct healing accordingly. Despite the diagnosis, Vagelio often attributed dysphagia to stress, to give just one example. MND might be incurable, but stress is not. Locating the problem not in the degeneration of neurons, which cannot after all be easily observed, but in lips and a tongue that trembled due to fasciculations, and positioning these fasciculations as a psychosomatic reaction to stress, meant that healing became a question of addressing stress. Vitamins and other supplements became important elements in her increasingly shrinking daily repertoire of activities. Using these supplements entailed selecting them, and preparing them for consumption, by, for example, mixing them in fruit juice or crushing them. The first supplement was vitamin C, to avoid catching a cold. Then, it was vitamin E when we were told it might have some positive effect. Co-enzyme Q-10, pholic acid, and B-complex were added to the mix later on, as were various oils, such as linseed oil.
The process of supplement selection entailed two separate parts. One part was rooted in Vagelio’s experience of MND, her day-to-day life with it. Vagelio directed this part of the selection. When she noticed a new symptom, a new weakness, she would try to address that through the addition of a supplement to her diet. Vagelio sought a cure by visiting health food and supplement stores, and consulting with nutritionists and practitioners of complementary and alternative medicine. The other part was rooted in her emerging knowledge about the mechanisms of the disease and was guided by the medical team who observed Vagelio, as well as by my brother and I. Pre-clinical trials of the co-enzyme Q-10, for example, show potentially positive effects in slowing down the process of neural degeneration and this clinical knowledge then translated into recommendations from the medical team.
In order to retain adequate nutritional intake, Vagelio started receiving high-energy liquid meal supplements. These came in different flavours: vanilla, chocolate, and strawberry among others, all of them sweet, resembling a milkshake both in colour and consistency. However, the supplements did not taste good, and we had to find ways to make this mixture more palatable; after all, food is supposed to taste good (Mol, 2014). We tried to do this by adding fruit juice or cheese to give it a different taste, for example. We had to mix all the different capsules, pills, oils, and nutrition supplements in a cup full of a liquid meal substitute to produce a thick drink of brown or yellow colour. The drink had a strong smell, because of the co-enzyme Q-10. The capsules had to be pierced so that the liquid contained within them would come out; the pills had to be crushed and the oils had to be measured. Vagelio performed all this piercing, crushing, and measuring while her dexterity allowed her to do so, and then the family would carry it out, each of us in our own way — by using a hand blender, by mixing everything manually, or by using a combination of spoons and forks to crush in a little bit of water first before adding more liquid.
To some extent, all these supplements addressed the need to create hope that things did not need to change, that everything would be all right in the end. Their use was not “about addressing the effects of illness on the physical body [but] about addressing its effects on the lifeworld of the people affected by that illness” (Sakellariou, 2015c:7). In other words, I do not think Vagelio chose those supplements in order to get better, but in order to take care of herself. In the face of an incurable illness, where the only known medication (Riluzole, which Vagelio was receiving) cannot stop or even considerably slow down the disease progression, how can people maintain hope? What practices do they engage in as part of this process and what effects do these practices have? Similarly, the practices guided by the emerging biomedical knowledge (the use of vitamin E for example, which according to pre-clinical trials might protect neurons from degeneration), were perhaps used in order to construct care. If, for biomedicine, the main site of intervention is a disease, then acts of care need to target that entity. Of course, this was an expensive way to create hope, costing an average of 200-300 euros a month (215-320 USD).
Questions kept surfacing: Is this what a good life is about? Is this a world one can live in? For Willems (2010:270)
the migration of advanced technology from the hospital to the home implies the migration of a (dreaded) form of dying to the home. In this form the body has lost all its capabilities and needs support for the most basic functions, but the mind lives on — synchronicity is lost.
The PEG can be seen as one of these technologies; it is a solution to the consequences of dysphagia, but also a reminder that the body is not functioning the same way it used to. The way the PEG is perceived is likely to lead to different decisions. DelVecchio Good (2007) notes that it is hard to not use procedures and processes deemed to be life enhancing once these become widely known and available. People, however, choose those technologies they can picture themselves using; they construct an imaginary future and choose those technologies that seem compatible with that anticipated and desired future. Some procedures can be associated with a dreaded rather than a desired future, especially when desire seeks more than survival. A good life can sometimes be about denying those processes that might attend to clinical symptoms of a disease.
What kind of future is PEG associated with? For my mother it was a dreaded future that had to be avoided. It represented a process that “signifies a radical change of what bodies are supposed to look like, and can make people feel subjected to medical technology” (Sakellariou, 2015c:5); an aberration of what the body should look like, and an affirmation that disease is winning over the body. Research suggests that she was not alone in deciding against having a PEG (Albert et al., 2001). Was there a way that PEG could have been introduced differently that would have made her decide to have it? Would a PEG have made a difference that she would have welcomed? If the process was carried out without complications and she survived it, having a PEG would have led to increased and more effortless nutritional intake. Would it however have led to the construction of a better life, to a future approximating more closely that desired future and a more inhabitable world, albeit perhaps one of a very different nature?
Jackson’s reflections of the “tension between life as thought and life as lived” (2014: 43) are relevant here. Vagelio’s choices seemed to be guided by an unending tug of war between trying to avoid a dreaded future and trying to construct a desired one. Most choices had a desired and a dreaded effect and it was a fine process deciding what to do, based on which effect was stronger. And here lies the paradox of this tension: in the construction of an inhabitable world people choose those practices or ways of living that seem better than others. When something like a PEG is chosen, it cannot be undone. So, the border between practices as thought and practices as lived sometimes cannot be crossed and some practices will remain forever separated. Selecting a PEG as an act of care that can lead to a certain kind of inhabitable world means that in that inhabitable world receiving adequate nutrition in a comfortable way is more desired over a body-without-gastrostomy.
The creation of an inhabitable world, one that a person can call home, is not an abstract process but one grounded in concrete acts of care. Das (2014) highlights the importance of acts that might often appear to be mundane for the creation of a way of living. What acts are important depends on the context. Vagelio and the people around her remade what eating as an activity and food as a substance were about, how they were constituted, and how they were practiced. We created an inhabitable world by experimenting with the notions of what Vagelio could and could no longer do. This inhabitable world was made and remade daily. It involved flavours (sometimes strawberry, sometimes vanilla, sometimes blue cheese) and sounds (the whirr of the suctioning machine after meals or the motor of the hand blender).
A focus on how people negotiate the creation of inhabitable worlds can enrich anthropological understandings of the enactment of subjectivity and the ways people create a place of care and belonging to build a home in the world. Such focus can also help illuminate the different worldviews that people enact. Whether having a PEG, for example, is a good or a bad decision is ultimately a decision about what one’s inhabitable world should look like. For Jackson different worldviews can be viewed “not as theories about the world but as existential means of achieving viable ways of living in and with the world” (2012:123), or as different and complementing ways of constructing a life one is satisfied with. This leads to two questions of central importance to anthropology: How can different worldviews best inform each other to construct a good life? And how can we be sensitive to what remains unspoken and what cannot physically be spoken? The creation of an inhabitable world depends on people collaborating and negotiating joint action into a future, which can be both known and unpredictable.
Albert, S., Murphy, P., Del Bene, M., Rowland, L., & and Mitsumoto, H. (2001). “Incidence and predictors of PEG placement in ALS/MND.” Journal of the Neurological Sciences 191 (1-2):115-119.
Appadurai, A. (1981). “Gastro-politics in Hindu South Asia.” American Ethnologist, 8 (3), 494-511.
Das, V. (2014). Action, expression, and everyday life; Recounting household events. In V. Das, M. Jackson, A. Kleinman, and B. Singh (eds.) The Ground Between; Anthropologists Engage Philosophy (pp. 279-306). Durham: Duke University Press.
DelVecchio Good, M. (2007). “The medical imaginary and the biotechnical embrace; Subjective experiences of clinical scientists and patients.” In J. Biehl, B. Good, and A. Kleinman (eds.) Subjectivity; Ethnographic Investigations (pp. 362-380). Berkeley: University of California Press.
Jackson, M. (2012). Between One and One Another. Berkeley, CA: University of California Press.
Jackson, M. (2014). “Ajàlá’s heads; Reflections on anthropology and philosophy in a West African setting.” In V. Das, M. Jackson, A. Kleinman, and B. Singh (eds.) The Ground Between; Anthropologists Engage Philosophy (pp. 27-49). Durham: Duke University Press.
Mol, A. (2014). “Language trails: ‘Lekker’ and its pleasures.” Theory, Culture & Society, 31 (2/3), 93-119.
Sakellariou, D. (2015a). “Towards the construction of a nicer life; Subjectivity and the logic of choice.” Anthropology in Action 22 (1), 46-53.
Sakellariou, D. (2015b). “Home modifications and ways of living well.” Medical Anthropology: Cross-Cultural Studies in Health and Illness. In press. doi: 10.1080/01459740.2015.1012614
Sakellariou, D. (2015c). “Enacting varieties of subjectivity through practices of care; A story of living with motor neuron disease.” Qualitative Health Research. In press. doi: 10.1177/1049732315584744
Willems, D. (2010). “Varieties of goodness in high-tech home care.” In A.
Mol, I. Moser, and J. Pols (eds.) Care in Practice; On Tinkering in Clinics, Homes and Farms. New Brunswick: Transaction, pp. 257-276.
Dikaios Sakellariou is a lecturer at the School of Healthcare Sciences, Cardiff University, United Kingdom. He has co-authored and co-edited A Political Practice of Occupational Therapy and Occupational Therapies without Borders (with Nick Pollard and Frank Kronenberg), and Politics of Occupation-centred Practice (with Nick Pollard), on the enactment and enablement of daily life and the experiences of disability and disablement.
The box is white, and adorned with a rectangular red button about half the size of my palm. White is clean, sterile, new. Red is alarm, is stop, is imperative. But the box sits, quite innocuously, to the side of the door. It is easily passed by, and indeed I do just that. I am chastised.
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.
I had begun my fieldwork with the expectation that the ‘participant’ in participant observation was not much of an option for me: I study gene therapy and there is little that I can contribute without physically endangering anyone. Yet the sense I got from stamping the white box was very much one of participating, of taking part in routines crucial to this world. This is because around the red box a whole network of practice, knowledge, and ethics coheres, and engaging with this particular object places me at its center.
Unpacking the box
When the red button is pressed, a pump mechanism concealed inside the white box dispenses a watery puff of alcohol onto the palm. This is to be rubbed against the other hand, up the wrists and between the fingers. It disinfects the hands, those most crucial of medics’ tools. The boxes are the outcome of a well-established medical turn, the late 19th century rise of germ theory. This was facilitated by new technologies like the microscope, biological agents such as malaria and tuberculosis, and colonial enterprises that presented new health challenges and experimental populations (Latour 1988, Lock and Nguyen, 2010). Slowly microbial logics replaced the disease paradigm of miasma, and practices of keeping clean came to be the appropriate response. The material products of this shift are diverse, and familiar to most of us in Euro-America: soap, latex gloves, hand sanitizer. The work of keeping clean is routine in the hospital, and routine in everyday life. Recent commentators argue that our environments are over-sanitised, failing to expose bodies to microbes that build resilience, but in the hospital these routines of cleanliness remain essential.
The box I’m talking about is in no way special. Its siblings populate the hallways of this, and other, hospitals. There is one by the elevators at reception, one at each of the doors in the outpatient clinic, and others dotted seemingly at random on corridor walls and doorways. They are ubiquitous, silent, and central to the smooth operations of the hospital and its inhabitants. Having stamped the box, nurses, doctors, and visitors can lay hands on patients without fear of transmitting anything dangerous to them. The free movement of people in and out of the hospital, through its halls and wards, depends upon restricting the movement of microbes. To stamp the white box is to sacrifice these minute but lively beings en masse, and allow life to go on at the human scale. Thinking of how “spaces are made with objects” (Law 2002) here we see clinical space materialize through these patterns of human and microbial movement. With its starkly medical red and white dress, the pump compels particular forms of order, both epistemic and behavioral.
The white box sitting innocuously at the ward door has another job: it is an ethical sentry. It is a physical checkpoint where good practice can be performed in a matter of seconds. It is a question mark that each person who hits the button answers: yes, I am doing the good thing. And the consistency with which passers-by touch it testifies to how routine these ethics become. If I think ‘everyday ethics’ into dialogue with the goings on of the hospital while looking at the spray pump, I come to think of how ethics can be anchored by objects that collude with medical training and the movement of bodies to produce an embodied clinical ethic. The biomedical worldview of doctors and nurses dictates how microbes behave and how they can be stopped, just as it dictates that they must be stopped. What we see in this act of stamping the spray box is a convergence of logic, ethics and practicality. The pump enfolds a particular rationality and a particular ethic into its plastic confines, packaging these nebulous things into an easy-use collaborator.
Objects as allies
Though my time on the wards is minimal, I quickly come to embody this ethic. I sacrifice the who-knows-what on my hands to the white box, and I do it on-the-go. The box, with its various epistemic entanglements, provides a performative possibility that cannot be escaped: either you press or ignore it. My mastery over the red box is a modest assertion of belonging on the wards. It is a bodily statement, in which I acquiesce to the logic of this community, and affirm that I too share their ethic of prevention.
The question of ‘participant observation’ in esoteric medical settings is not quite resolved. While I can subscribe to their underlying logic, I still cannot learn the medical techniques that my participants have mastered through years of practice and education, those techniques that grant them their professional status and experimental capacity. But finding small, everyday opportunities to share in certain actions has consequences for access, for being perceived as the kind of person who can occupy otherwise-restricted spaces. Here, the white box collaborates with my hospital ID card and my notebook to get me into spaces of sickness and experiment, to encourage people to talk to me freely. Functionally simple, everyday objects become allies to the anthropologist, and they also provoke new insights into the rationalities and priorities of those who produce and use them. Unpacking the history, assumptions, and values that adhere to mundane material items is another route to understanding and belonging when working ethnographically.
Latour, Bruno (1988) The pasteurisation of France. Cambridge: Harvard University Press.
Law, John (2002) “Objects and spaces.” Theory, Culture and Society 19(5/6): 91-105.
Lock, Margaret and Nguyen, Vin-Khim (2010) The anthropology of biomedicine. Oxford: Wiley-Blackwell.
Courtney Addison is a doctoral candidate at the University of Copenhagen’s Department for Food and Resource Economics, and resident anthropologist on the Consortium for Designer Organisms. Her PhD investigates human gene therapy in the labs and clinical trials of two European sites. She is interested in using ethnographic approaches and work around ‘ordinary ethics’ to problematise bioethical reasoning; in questions of routine and experiment as they relate to knowledge-making; and in the problems and possibilities that arise between actors in different positions of power and expertise.
Workshop Report: King’s College London, 11 December 2014
Different forms of exchange between neuroscientists, social scientists, and humanities scholars have been emerging, and these have led to experimentation with concepts of nature and culture, biology and society, and affect and cognition, amongst others. There are, however, few accounts of how such collaborations can or have been done, or of what it is like to experience them. [i] The Neuroscience and Society Network symposium, organized by the Department of Social Science, Health and Medicine at King’s College London on 11 December 2014, invited researchers invested and engaged in these interdisciplinary exchanges to explore the ‘politics and pragmatics’ of collaboration between the social sciences, humanities and neurosciences.
This is a summary of the workshop. It outlines three related lines of discussion that came through in the presentations and conversations. The first is the importance of thinking through what neurosocial science could be, and its conceptual and experimental potential. The second is the need to negotiate the challenges of collaboration between neuroscientists, social scientists and humanities scholars – particularly the sometimes awkward and difficult emotional work that guides them. The third is a reflection on the social context and implications of the neurosciences. In what follows, we highlight only some of the more prominent points and areas of debate explored in the workshop.
What is a neurosocial science?
Different models of neurosocial science were discussed in the workshop. As Andreas Roepstorff put it in the final debate: “We do not need a normative approach outlining what neurosocial science should look like. What we really need is to start with coming up with different models of what neurosocial science could be.”
In the workshop’s keynote, titled ‘A Microbial Unconscious’, Allan Young presented one such possibility – a view of neurosocial science in which we envisage the microbial world in social, political, and economic terms. This serves as a critical response to the growing brain-centered literature, with the argument that “once we extend our conception of the brain to include the brain-gut axis, we have an additional reason to call the social brain ‘social’, since its functional elements now include an interactive microbial society.” Using the lexicon of microbiologists and other scientists studying the immune system and infectious diseases, Young’s talk described the complex interactions and communication between bacteria using words like ‘communities’, with some bacteria ‘cheating’ by benefiting from the ‘social life’ but not contributing, some conducting ‘exploitation’, and some bacteria acting as ‘suicide bombers’ if sacrificing themselves means saving more bacteria. This begs the question, as Young asks, “Do bacteria have a ‘rich social life’, as microbiologists claim, or does this claim anthropomorphize a truly asocial nature?”
First, one must re-interpret what it means to be social – does something have to be cognizant to be social, defined by Young as capable of decision-making? While many would argue that a brain is necessary to perform any kind of decision-making, microbiologists would argue that the complex communication system exhibited by microbial networks is a form of decision-making. Young finishes his talk with the argument that the human microbiome is part of what Yale cognitive psychologist John Bargh has termed the ‘new unconscious’, placing “the gut-brain axis at the centre of a political economy, where colonies provide raw materials and essential services for the central nervous system and, ultimately, the brain and consciousness.” Young’s talk pushed us to think of the neuro beyond the brain, and to question what we mean when we talk about sociality.
What neurosocial science means was also explored by Mattia Gallotti in his paper, “Collective intentionality – theory and practice.” Gallotti presents a picture of neurosocial science as one that seeks to ‘bring theory and practice together’. Gallotti explored this by looking at what cognitive neuroscience and the philosophy of intentionality together have to tell us about ‘the social being of human beings’, to ‘naturalize intentionality’, as Gallotti put it. He argues that the ‘we-mode’ hypothesis, that social understanding is made possible by collective modes of thought, has become a vital tool for studying social relations. What emerges from this is a conception of how neurosocial collaboration can work; the neuroscientist providing the practice, and the philosopher the theory.
Indeed, what the future of neurosocial science might mean for how we think about and explore the relationship between ‘theory and practice’ was a prominent theme. In his talk, “What’s in a neurological concept?” Sam McLean provides a contrasting perspective to Gallotti on the relation of ‘theory and practice’. McLean outlined the emergence and affects of Drug Memory, a neurological concept he argued is in the process of changing drug addiction into a memory disorder rooted in ‘dysfunctional’ neurobiological systems. Based on fieldwork with neuroscientists at the University of Cambridge who are working on what he calls ‘drug memory neuroscience’, McLean proposes that neurological concepts are sites of ontological disclosure which forces us to question the distinction between theory and practice as two separate types of human activity.
Philipp Haueis reflected on his experience working as a philosopher of science at an institute for cognitive neuroscience. First, he distinguished between ‘neurophilosophy’, as using neuroscientific findings to re-explore fundamental issues in philosophy such as free will and morality, and ‘philosophy of neuroscience’, as questioning the explanation, method, and ontology used in neuroscience research. For Philipp, the philosophy of neuroscience is more fundamental since it questions what experimental methods are used, what kind of inferences can be drawn from the data, and how the inferences justify explanations. Philipp describes what he is doing as an ‘embedded philosophy of neuroscience’ – embedded because of its focus on the practice of neuroscience and on ongoing neuroscientific research, rather than neuroscientific textbook knowledge, and because as a philosopher he participates in the everyday work life of a neuroscientific laboratory. Philipp aims to devise adequate concepts to describe the human brain in his work, specifically ‘how can resting state functional connectivity studies proceed in an exploratory fashion?’
Negotiating the affective and political aspects of neurosocial collaborations
The contributions returned to the practical challenges of neurosocial collaborations. The theme of disciplinarity, and the place of intellectual disciplines in the future of neurosocial science, was explored. Ilina Singh asked how inclusive or exclusive they are likely to be. She asked “what disciplines are deemed acceptable or not”, given that the “social sciences are generally suspicious of industry for example”. Singh questioned how we might view the relationship between disciplines in the interdisciplinary space of neurosocial science. As she put it, “might we think of them in terms of critical kinship to recognize its shared, reciprocal nature?”
Other contributions, including that of Nikolas Rose, highlighted the importance of recognizing the value of disciplines ‘with their different histories, concepts, practices’, and the challenge of negotiating these. As Chris Frith put it, “there is something radical about bringing disciplines together” rather than overcoming their differences. A point made strongly by several other contributions, including Des Fitzgerald, Philipp Haueis and Jan Slaby, is that a neurosocial science must recognize disciplinary differences, and mobilize and foster the conceptual and experimental potential they can produce. This is related to the affective dynamics often at work in neurosocial collaborations.
Des Fitzgerald’s talk reflected on attempts that seek to ‘reconcile’ disciplinary differences – what can be reconciled in interactions between neuroscience and social science, and what can’t be? Drawing on Marilyn Strathern’s advocacy for an interdisciplinarity modelled on Fijian gift exchange, Des argues “that there is a kind of potent transaction embedded in division – and that this gets entirely lost in the will to reconciliation.” Pushing us to problematize the title of the workshop, “Towards Neuro-social Science”, Des is asking what it means to be together and what it means to be apart. Drawing on his experience in the European Neuroscience and Society Network (ENSN), as part of an event that drew together neuroscientists and social scientists to collaborate on specific projects, Des talked about how the group he worked with “never actually discussed – or acknowledged – the range of ambivalences that surrounded our collaboration. Instead, we quelled our anxieties; we never confronted one another; we kept things vague”. Their collaboration was not one of ‘reconciliation’, but in remaining different within the ‘unsettling’ collaboration. For Des, discomfort is what it means to be together and apart, and an acceptance of this discomfort, rather than an attempt to quell it, is what should be sought after in these kinds of interdisciplinary exchanges.
Felicity Callard, a geographer, and Daniel Margulies, a neuroscientist, reflected on their collaborative experience of critically re-examining the concept of the ‘resting state’ in cognitive neuroscience. Once they had navigated the temporal and spatial challenges as two researchers working in different countries with different sleeping and work schedules, one ‘rediscovered play’ in scholarly endeavor and the other found a ‘new way of doing neuroscience’ influenced by the history of scientific concepts. Callard and Marguiles outlined the 3 different ‘collaborative modes’ that they engaged in; reflective, disruptive, and entangled, and showed how their first collaboration in 2008 led to joint publications, eventually leading up to an interdisciplinary collaborative project between scientists, humanists, artists, clinicians, public health experts, broadcasters and public engagement professionals funded by the Wellcome Trust’s grant to “Hubbub, the first interdisciplinary residency of The Hub at Wellcome Collection”.
In some papers and interventions, the affective dynamic of neurosocial collaboration is entwined with the unequal power relations between disciplines, as highlighted by Jan Slaby. These are sometimes played out in the collaborations themselves. Nikolas Rose and Andreas Roepstorff both spoke of how the exchanges between neuroscientists, social scientists and scholars working in the humanities are one-sided in terms of effort to make neurosocial collaborations work. As Andreas Roepstorff said: “There are increasing numbers of social scientists working hard to understand the neurosciences. But there are very few neuroscientists reading anthropology, sociology, philosophy”.
Neuroscience and/in Society
The workshop finished where it began, with the relation of ‘the neuro and the social’ – in particular the social implications of the neurosciences, as well as what future engagements between the two could bring.
In his paper on the history of the social uses of neuroscience in France since the 1960s, Sebastien Lemerle reflected on ‘The Biologisation of the Social: Discourses and Practices’ programme in Paris, which aims to foster interdisciplinary exchange between the social and biological sciences. These collaborations are sometimes undermined by ‘fierce ideological differences’ marked by ‘mutual suspicion’, preventing the study of the social implications of the neurosciences, which may prove valuable in responding to matters of public policy. Lemerle argues that the relation of the neuro and the social, since the beginning, has been on abstract, theoretical matters. There is greater collaboration between neuroscientists and philosophers, rather than social scientists, Lemerle says – an example of this is the 2002 book by Jean-Pierre Changeux, a neuroscientist, and Paul Ricoeur, a philosopher, titled What Makes Us Think? A Neuroscientist and a Philosopher Argue about Ethics, Human Nature, and the Brain. For Lemerle, neurosocial collaborations need to be, or would benefit from, being situated in empirical concerns.
In his intervention at the end of the workshop, Nikolas Rose imagined the future of neurosocial science to be a ‘vitalist human science’ that places humans among the animals, sees humans as specific kinds of animals, but gives due respect to their differences, and recognizes that we are ‘living, breathing creatures who will grow, will sicken, and will die’. This ‘vital human science’ could, argued Rose, do worse than focus on new developments in psychiatry, from the efforts of neuroscientists to identify ‘biomarkers’ in the brain to explain mental distress, to the ‘urban brain’ and the relationship between what Simmel called the ‘metropolis and the mental life’.
Jan Slaby provided another perspective on the future of neurosocial science. In his final intervention, Slaby, like McLean, spoke of the importance of rescuing the ‘experiment’ from the confines of the laboratory. Slaby questioned the emphasis sometimes placed on the neuroscientific experiment as the ‘legitimate site’ of neurosocial science collaborations, and what neurosocial science should aspire to if it is to prove its value. For Slaby, this both reinforces the unequal power relations operating in neurosocial collaborations, and under-estimates the power of concepts to disclose important insights into the human animal. Slaby finished as Young began, by insisting that “just as we are biological beings all the way up, we are also social and historical beings all the way down”.
So what is a neurosocial science? It is a questioning of the neuro and of the social, a collaboration between the neuro and the social, the placing of the neuro within the social, or arguing for the social of the neuro. If there is any conclusion to be drawn from the different approaches outlined at the Neuroscience and Society Network’s workshop, it is that collaborations between the social sciences, neurosciences, and humanities take many different forms, and are more likely to thrive if they can negotiate and foster productive differences rather than seeking to overcome them.
This workshop is part of a wider programme of activity by the Neuroscience and Society Network (NSN) to develop and support collaborative exchanges between the neurosciences and the humanities and social sciences. The Network is building on the successes of its predecessor, the European Neuroscience and Society Network, which was launched at the London School of Economics and Political Science in 2007. The next NSN workshop takes place in December 2015, at the Mind and Brain Institute in Berlin, and will explore the making and use of brain models in neuroscience and psychiatry.
[i] There are reflections on collaboration in synthetic biology, such as Paul Rabinow and Gaymond Bennett’s 2012 book Designing Human Practices: An Experiment with Synthetic Biology and Balmer et. al.’s Towards a Manifesto for Experimental Collaborations Between Social and Natural Scientists. In this workshop, we wanted to focus on collaborations with the neurosciences.
Sam McLean is a PhD candidate at the Department of Social Science, Health and Medicine, King’s College London. He is currently completing the first ontological history of memory in addiction neuroscience. His first book, Damn the Cows: An Essay on Memory as Sickness, is also nearing completion.
Tara Mahfoud is a PhD candidate at the Department of Social Science, Health and Medicine, King’s College London. She is currently conducting fieldwork in Geneva, Switzerland as part of a study that explores the rhetoric and practices of data integration, modeling, and simulation in the European Union’s Human Brain Project.
This post is part of our new series, The Ethnographic Case.
In 1976, when I was eighteen and he was eighty-four, my grandfather told me the case of the young farmer and the turpentine. By then this case was more than fifty years old. It stemmed from the time that my grandfather, Chris Mol, worked as a general practitioner in what was then a poor, sandy region of the Netherlands. When he settled there, the people and the land still looked pretty much as they had when, forty years earlier, Vincent van Gogh had been drawing and painting the local farmers. At the time, being a family practitioner meant receiving people who came to see ‘the doctor’ in his house throughout the day. His was a big house, painted a warm yellow, in the style of Vienna (where after graduating in Amsterdam my grandfather had extended his studies). Farmers regularly came for a consultation after Sunday mass, when they had already made the walk to the village centre. And, when a young boy running, or a neighbour with a bicycle, were sent to fetch him, my grandfather would go and pay house visits to the spread out farms, traveling by the motorbike that he had bought as soon as he could afford it.
The case of the young farmer began with such a house visit. The doctor found the young man in bed with a fever and a nasty, infected wound in his left leg. He made a cut in the skin of the abscess, to allow for the escape of the pus bonum et laudabile: the good and praiseworthy pus. A body liberated of pus would heal faster. But the young farmer didn’t heal. When the next day the doctor was called in once again, he feared an imminent sepsis, from which the patient was likely to die. What to do? There were as of yet no antibiotics. There were no other treatments either. Or were there? My grandfather remembered a case history that he had heard from an older colleague. In that case, too, the problem had been an infection in a leg that had become compartmentalised, festering and putrefying, while the rest of the body had not got itself involved in the defence.
This is where the turpentine comes in. Chris Mol asked the young farmer permission to engage in an experiment. The patient readily agreed. “Yes doctor,” he said, “if you do nothing I will die, I feel I will.” So my grandfather steered his motorbike to the workshop of the local painter and asked for dirty turpentine. Back in the farm he injected a small amount of this into the dying man’s right leg, the other leg. The experiment worked out well. The nasty stuff injected aroused a fierce, overall reaction of the immune system. This vehement immune response also reached the wound in the left leg and the bacteria infecting it. For a while the patient was critically ill, but he healed. That is the case of the young farmer and the turpentine. My grandfather told it to me as a lesson about both the human body and medical practice, a layered pedagogy that is typical of medical case histories. This is the lesson about the human body: it is complex and not quite predictable. And this is the lesson about medical practice: don’t just depend on your textbooks, they may fail you. If they do, be inventive, daring. Case histories may help here as they relate what, often surprisingly, worked out well in other sites and situations.
As I reiterate this story here I seek to add another lesson, a lesson about sharing knowledge. To my mind ‘the case of the young farmer and the turpentine’ is an exemplary case of a case. 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. Such tinkering may serve highly varied goals. Medical cases may inspire doctors who, under slightly different circumstances, with other specificities kicking in, have to solve a similarly intractable problem. Judges may seek guidance from cases as they consider how to judge the next particular intractability. For ethicists, discussing past cases or imaginary vignettes is a way of sharpening their skills of appraisal. For historians a case begs questions about its conditions of possibility: what all had to be in place for this particular event to occur?
Cases are also good for those of us who craft theory as we work with empirical materials. For even if cases index situated events, it is still possible to make them pertinent elsewhere. Not everywhere, mind you. It remains to be seen where a lesson travels and where it doesn’t hold. The genre of theory that cases inspire does not aim to be empirically encompassing or universally valid. Instead it carries a set of sensitivities that emerge from the case at hand. And then begs the question what might be different elsewhere. For example. The case of anaemia may exemplify relations between clinical and laboratory ways of separating out the normal from the pathological. (But in cancer the clinic relates differently to the lab.) The case of diabetes may be used to argue that ‘choice’ is not a particularly helpful term in the context of living with a chronic disease, where other terms, like ‘care’, make better sense. (But within caring practices there are moments when choices impose themselves.) The case of meat may illustrate the multiplicity of natures within the so-called West – for however much this ‘West’ is mono-naturalist in theory, in many of its practices, meat-practices included, reality multiplies. (A complicated message for there are also instances where mono-naturalist visions impose themselves upon practices).
And the case of the young farmer and the turpentine? Since 1976 I have tenaciously kept it in the back of my head as I worked on other cases. And as finally I now write it down, I am curious if beyond my specific situation, that of a granddaughter to whom it was passed on as a heritage, it may hold up as both a compelling story and a convincing case of a case.
 For the separation between work and private space and time of general practitioners in the course of the twentieth century (in Britain, but the Dutch case is strikingly similar) see: David Armstrong, (1988). Space and time in British general practice. In Lock, M., & Gordon, D. (Eds.) Biomedicine examined, Springer (pp. 207-225).
 For the immunology that was rising at the time, see: Cohen, E. (2009). A body worth defending: Immunity, biopolitics, and the apotheosis of the modern body. Duke University Press.
 A great example of an history quest for conditions of possibility is Michel Foucault (1973/1963), The birth of the clinic, trans. A. Sheridan, London: Tavistock.
 Mol, A., & Berg, M. (1994). Principles and practices of medicine. Culture, medicine and psychiatry, 18(2), 247-265; Mol, A. (1998). Lived reality and the multiplicity of norms: a critical tribute to George Canguilhem. Economy and Society, 27(2-3), 274-284.
 Jain, S. L. (2013). Malignant: How cancer becomes us. University of California Press.
 Mol, A. (2008). The logic of care: Health and the problem of patient choice. Routledge.
 Callon, M., & Rabeharisoa, V. (2004). Gino’s lesson on humanity: genetics, mutual entanglements and the sociologist’s role. Economy & Society, 33(1), 1-27.
 Yates-Doerr, E., & Mol, A. (2012). Cuts of meat: Disentangling western natures-cultures. Cambridge Anthropology, 30(2), 48-64.
 Bonelli, C. (2012) ‘Ontological Disorders: Nightmares, Psychotropic Drugs and Evil Spirits in Southern Chile’, Anthropological Theory 12(4): 407-26.
3rd Cascadia Seminar, “Ethnographic Adventures in Medical Anthropology”: Conference Brief by Nadine Levin
On Friday, April 24, more than 50 attendees gathered to hear the keynote—and kick off a weekend of stimulating talks and discussion—for the 3rd Cascadia Seminar, “Ethnographic Adventures in Medical Anthropology.” Taking place every two years, the Cascadia Seminar brings together a diverse group of medical anthropologists: scholars at all stages of their careers, from graduate students to postdocs to full professors, and from a variety of institutions within (and beyond) the United States.
As a scholar who has been based in the UK for the last six years, and who has recently moved to UCLA, I relished the opportunity to meet new colleagues on the West Coast. But it was the particular format of the Cascadia Seminar—which made for lively discussions after each presentation, allowed for continued discussion throughout coffee breaks and meals, and facilitated new friendships and collaborations—that made this event so worthwhile, particularly as the traditional conference format is under increasing debate. Unlike larger conferences such as the AAA, where the volume of people and papers makes engaging with scholarship in a deep and meaningful way impossible, the seminar is intimate and single track. There are no concurrent sessions, and all participants attend all papers. Presenters are given 40 minutes to speak, and thirty minutes for discussion, giving the speakers ample time to flesh out ethnographically-rich and theoretically-shaped arguments, and allowing the listeners to provide meaningful commentary.
According to Janelle Taylor, one of the founding members of the event, the Cascadia Seminar emerged out of informal conversations among medical anthropologist colleagues at several universities in the region. It was an experiment in creating a model for a different kind of intellectual space for medical anthropology: a small, intimate, high interest, low-cost weekend conference organized collaboratively by medical anthropologists on faculty at a number of different universities and colleges in the US Pacific Northwest and British Columbia, known as the Cascadia region.
The Cascadia Seminar kicked off with a Friday evening keynote by Mette Svendsen (University of Copenhagen) on “A life worth living: negotiating life worthiness in humans and animals.” Exploring how fetal pigs are used as research models for babies in intensive care units, Mette raised questions about how the value of life is negotiated in multi-species, translational settings. This ethnographically sensitive talk set the stage for the rest of the seminar beautifully, by raising questions about what it means to configure animals and humans as persons versus resources, what it means to provide care in ethically-fraught contexts, and how it is possible to link ethnographic data to the broader contexts of contemporary biomedical science.
The rest of the seminar showcased how scholars are pushing the boundaries of the topics and contexts that are considered relevant to medical anthropology. Several scholars described projects in “classic” settings like India, Sierra Leone, and Native American reservations, while other scholars honed in on the biomedical discourses surrounding abortion counseling, transgender clinics, and data-intensive research on metabolism. Many of the papers engaged with and troubled the notion of “care” in relation to changing economic relationships, neoliberal market regimes, and information-driven societies.
During the first half of Saturday, Nadine Levin (UCLA) presented “What is metabolism after ‘big data’? Unearthing the norms, values, and politics of bodies and populations” which explored how metabolism is being reconfigured in normative ways with data-intensive practices, while Faruk Shah (University of Rajshahi/Auckland) presented “Biomedicine, Healing and Modernity: An Ethnographic Study of Village Doctors in Bangladesh,” which explored how village doctors occupy the in-between space of traditional and neoliberal medicine. During the second half of the day, Rima Praspaliauskiene (University of California, Davis) presented “Enveloped Care in Lithuania,” which used the figure of the “envelope” to explore how local forms of care intersect with monetary transactions, while Marieke van Eijk (University of Washington) presented “The Price of Care: An Analysis of the Merger of Money and Medicine in US Transgender Care,” which discussed the links between money and caring in contexts where insurance discussions dominate.
On Sunday, Sean Bruna (Western Washington University) began the morning by presenting “A Call for Emergent Practices: Reconsidering Translational Theory as Applied in Diabetes Prevention Programs,” which discussed how community-level, locally-embedded intervention into diabetes can provide a counter-narrative to biomedicine, while Mara Buchbinder (University of North Carolina) presented “Scripting Dissent: Abortion Laws, Medicine, and the Politics of Scripted Speech,” which used the figure of the “script” to highlight the ways in which healthcare providers navigate the challenging legal and political environment of abortion. To round things off, Alexandra Collins (Simon Fraser University) presented “Global Fund-ization: Funding mechanisms and HIV/AIDS program survival in Sierra Leone,” which discussed the tradeoffs between epidemiological facts and medical care that occurs in contexts dominated by neoliberal aid structures, where reporting “facts” in databases determines funding but constrains local action.
We are in an era where academics (and non-academics) are increasingly questioning the use of the conference format—with its short, scripted papers, and seeming complete lack of creativity—as the best way to communicate and disseminate findings. Moreover, with the increased precariousness of permanent jobs, and rising inequalities in education, people are more and more questioning whether large, expensive conferences, which levy fees and require participants travel long distances, provide the best value for money. In light of these questions, innovative and low-cost events like the Cascadia Seminar provide an exciting alternative for the future of medical anthropology, as well as other fields of social science and humanities research. I would strongly encourage readers of Somatosophere to create and participate in these types of local events.
We launch this series with a question: What is an ethnographic case? As ethnography is a process and practice of authorship, this question produces another: What can it be made to be?
This series explores what cases can generate, and our reasons for resisting or embracing them as modes of analysis. There is a rich and variable history to “thinking in cases” (Forrester 1996). 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?
Over the next year we will bring you a series of “ethnographic cases.” This project has been inspired by Tomas Matza and Harris Solomon’s Commonplaces. As with that series, we will feature entries by scholars whose cases illuminate, even as they unsettle, how we work with cases. To pay homage to the traditional ethnographic monograph, the pieces will be collected in an expanding bookCASE. The virtual format of this bookCASE makes evident that changes are underway in the practice of ethnography. Clicking the cases may link to straight-forward text, but you may also find yourself amidst audio or video files, photographs, artwork, and more. Above, we referred to ethnography as a technique of authorship in order to highlight relations of power (author-ity) that accompany the assembly of cases. But the method of this authorship – writing, drawing, filming, illustrating – is not given, any more than an author’s singularity.
In medical, law, and business schools, exemplar cases have long been used as pedagogical tools. Similarly, we hope this collection can serve as a resource for teaching. You might use them to encourage your students to consider how to narrate an occurrence or event from the material of the everyday. (If your students write compelling cases, please have them submit these for publication as part of our student bookcase by sending their case to email@example.com and firstname.lastname@example.org.) Along the way, we might find that ethnographic cases produce a very different form of expertise than those produced in medicine, law, or business.
This bookCASE might be taken as a response to a recent challenge that the term ethnography is too vague and too overused to be useful (Ingold 2014). Rather than displace the term, the bookCASE seeks to shore it up— to invigorate it with the insights and interferences offered by attentive fieldwork. In many ways, “the case” and ethnography may seem antithetical: the former a short reflection, the latter based on a commitment over time. However, we suspect that a case becomes ethnographic in the way that it situates the narration of any given event within other narratives. The particulars of ethnographic cases may not aspire to generality, but may instead change the practice of and possibility for generality. The questions we began with are not ones we seek to answer definitively, but to open up and turn around— ones that we hope will lead to other questions and help us to narrate other conditions of possibility.
The pieces in this series focus on the worlds that materialize through research. Taken together, they offer reflection on our craft of description. We hope they make you want to author cases.
Emily Yates-Doerr is assistant professor of Anthropology at the University of Amsterdam. She is carrying out a study of the UN’s efforts to improve human capital through maternal nutrition. She is author of The Weight of Obesity: Hunger and Global Health in Postwar Guatemala.
Christine Labuski is an anthropologist and assistant professor of Women’s and Gender Studies at Virginia Tech, where she also directs the Gender, Bodies & Technology initiative. Her book It Hurts Down There: The Bodily Imaginaries of Female Genital Pain, tracks the emergence and physiological realization vulvar pain conditions in the contemporary United States.
The heated public debate about poverty, inequality, and discrimination that filled the news and social networks after the protests in Baltimore paints a full picture of just how many possible explanations we have for these problems, yet how little we know about how to change them. This month’s Web Roundup provides a very brief look at the discourses and narratives of poverty and upward mobility in America.
In a much contested column, D. Brooks claimed that it is the values and social interactions -of the poor- that explain why they are poor by arguing that “the actual barriers to upward mobility are the quality of relationships at a home and a neighborhood that either encourage or discourage responsibility, future-oriented thinking and practical ambition”. The responses were not long in coming, you can find a few examples here and here. These claim that arguments such as the one put forward by Brooks not only moralize the discussion by using values as the core explanation for the lack of upward mobility, but focus on blaming the victims and blatantly omit the structural factors at play in keeping people in poverty.
In the meantime, another column stated that the discussion on whether material conditions can explain values or if it is the other way around only demonstrates disengagement and laziness in thinking through the problem. The article makes an argument for the importance of taking the specific context and history into account. Baltimore is not Ferguson, or any other place for that matter. Yet, thinkers on both sides of the old discussion on poverty – those arguing for the role of values and agency and those focusing on structure- seem to forget these particularities. Readers are left with no tools to grasp them.
This month also brought about several interesting studies focusing on poverty and upward mobility in other parts of the world. One study demonstrated that the neighborhood where you grow up really does matter for income mobility. You can even see a map of the best and worst places to grow up in America, if you haven’t seen it already. NPR covered a study published by Science, carried out in several low and middle income countries to see if aid can help people create sustainable self-employment activities. It turns out that giving families the right kind of aid can create a persistent impact on income earning and stable improvements on wellbeing. This made me think of a TED Talk from a few years ago by E. Duflo where she does a good job reminding viewers that people who are poor are just like non-poor people in almost every way, they are no less rational. Yet, they struggle with things that most people take for granted, like access to bank accounts or running water. She makes a case for the need for rigorous approaches to answer small -yet far reaching- questions to improve the lives of people living below the poverty line.
Interestingly, what seemed missing from the debate was a discussion of the prevailing notions of poverty. We know that the stories we tell about poverty and the categories we draw matter. The public discourses on poverty and upward mobility -and the policies resulting from such discourses- are themselves cultural products, as argued by Small and colleagues in this paper. In many ways, the discourses on poverty reflect the beliefs, attitudes, prejudices, and orientations in the society, and shape how we relate to “the other”, in this case, the poor. Further, a close look at the assumptions about responsibility, agency, and deservingness provides a powerful opportunity to advance our understanding of the problem. Maybe asking about the entanglements between meaning making and poverty can result in something other than a “culture of poverty” thesis. Whether, when, and how cultural aspects matter to think through poverty and upward mobility is indeed an empirical question; one in great need of research.
Regulations versus hierarchies: Commuters creating inhabitable worlds in the Mumbai suburban trains by Annelies Kusters
During a group discussion at the India Deaf Society about the suburban trains in Mumbai, Bhaskar, a young deaf man suggested that a new rule could be introduced in the trains’ “handicapped compartments” (as they are called by Mumbaikars). He thought that the number of conflicts over the occupation of seats would be abated if a reserved-seat area was installed within the compartment. The reserved-seat area would be for blind people and for people who have disabilities in their legs or back which cause difficulties in standing, and not for deaf people and people with minor disabilities. As such, he suggested the idea of formalizing a binary hierarchy of bodies, in contrast with the complex hierarchies that are in play on an everyday basis in these compartments. His suggestion implies that he thought an increase in formal rules (imposed by the state or the railroad governing body) about how to inhabit and use the space of the compartments would be desirable.
Every day about 7 million people ride the Mumbai suburban trains, which constitute the most intensively used and overcrowded rail network in the world. In contrast to public transport in most other countries, in Mumbai, the trains are compartmentalised in a complex manner based on gender, class, luggage type, and “handicap”: the first and second class general compartments, ladies first class and second class, luggage (for vendors with loads) and the above mentioned “handicapped compartments”. Compartmentalising ideally makes travel without sexual harassment possible for women and provides people with disabilities and people with luggage with relatively more space to enter, alight and navigate the compartments.
Along with changes in train design and in the number and allocation of compartments, as well as an increase in the length of trains, compartments for disabled people have increased in size over the years. Subsequently, the number of travelers in the handicapped compartments has increased and become more diverse, such as the much-contested addition of pregnant women and an increase in the number of able-bodied unauthorized travelers. This leads to conflict: the question of who can claim the space of these reserved compartments is negotiated in everyday interactions in the compartments. Governmental regulations as to whom is entitled to travel in the compartments do not suffice here and are sometimes overruled as the space is governed by the passengers themselves. The passengers do not just decide who can travel in the compartments, but also who has the right to sit. Whilst Bhaskar suggests greater government regulation by installing a separated reserved-seat area, such a suggestion does not recognise the complex dynamics that are at play in the compartments. This article documents how the passengers travelling in the handicapped compartments try to create an inhabitable world, making the space liveable for the duration of their trip.
I am a Belgian deaf woman and an anthropologist. My husband and his family are deaf Mumbaikars who communicate in Indian Sign Language. This article is based on research between 2007 and 2014 (including 3 years of living in the city), consisting of participant observation, 2 case studies, 12 interviews and 4 discussions in deaf clubs. Whilst my research mostly focuses on deaf perspectives, I also draw on conversations with other disabled travellers, the president of the Mumbai-based Disability Advocacy Group (a disabled train commuters group), and ticket officers.
The handicapped compartments
Having separate compartments (rather than seats or areas) for people with disabilities seems to be quite unique. It is in contrast to the organising alternative, entirely segregated transport for disabled people such as dial-a-ride, paratransit, or handicabs. It also contrasts with (theoretical) Universal Design directives aimed at making spaces such as public transport widely accessible for all (such as by providing ramps to enter trains and buses and by providing polyvalent spaces that can be occupied by wheelchairs, strollers, luggage and bicycles. Importantly, in Mumbai the handicapped compartments are not necessarily “accessible” by universal access standards. There are many barriers for people with disabilities to get to the compartments: there are no lifts and few ramps in train stations, and to enter or alight the train, people have to negotiate a high step, for example. There are some infrastructural differences between the handicapped compartments and the general and ladies’ compartments: there is no pole in the middle of the doorway that would hamper entrance, and benches can hold only two instead of three people. However, it is not so much the infrastructural difference that makes this compartment more accessible (in contrast with the trend of Universal Design), but the lower density of commuters. Consequently, the Disability Advocacy Group (DAG) (see below) mainly focuses on keeping these compartments free from non-disabled encroachers, rather than lobbying for a higher accessibility of trains and train station infrastructure.
The compartments contain 6 benches for 2 people (occupied by 3 when it is crowded), one long bench in the back where 7 people can sit comfortably, and ample standing space (with handholds on the ceiling). The doors can be closed but generally remain open in order to let air pass through the compartment and to make the alighting/boarding process which starts when the train is still running easier.
The traveller body in the handicapped compartments during rush hour mainly consists of people who commute to and from their work and wear neat office outfits. Outside rush hours the traveller body is more diverse, consisting of people who travel for a more varied number of purposes: workers with irregular hours, housewives, and senior citizens. Most commuters are male, though an increasing number of women ride in the handicapped compartments since the arrival of new white-purple trains in 2002. These trains are better lit and more spacious than the older maroon trains with smaller handicapped compartments. The majority of passengers are people who have disabilities that do not prevent them from negotiating the infrastructural limits of the trains and train stations and/or from commuting to and from school or a course or (office) job in the city. These people for example have a deformed hand, a missing arm, leg or toe, have a disability in their back or leg(s), are blind or deaf. People with intellectual disabilities typically travel accompanied by a member of their family. Whilst a number of people use one or two walking sticks or crutches, people in wheelchairs or with severe mobility disabilities are typically not seen in the compartments, though a minority of legless travelers use small handmade boards on wheels on which they sit to navigate and hop in the compartment using their arms.
When it is very crowded, up to 30 people sit in the sitting spaces designed for 19 people and many more people stand. Encroachers stand in the portal of the compartment (though they also stand in the compartment itself when it is really crowded). On the floor near to the doors, a number of people often can be found sitting or squatting: these include often unauthorized travellers such as beggars; hijras (people who are born as men but emasculated, and usually dress as women, and who are part of hijra communities); poor non-disabled people; old people; and people with leprosy (who, despite having a disability, are not authorized to occupy the compartments). In addition, there are also authorized disabled travellers who might prefer to squat or sit on the floor rather than sit on a bench, and/or who enjoy the breeze in that area. The space near the doors is thus an ambiguous space: it is an in-between space for people who do not fully belong while it is also a desired place where people can stand or sit in the breeze and then quickly alight from the compartment.
Governmental regulations for travel in the compartments
Disabled people already in the compartments scrutinize people who enter them for visible signs of disability. My husband and I were often addressed (most of the time in a friendly way) by being asked: “handicapped?” (usually in English) as deaf people typically do not look disabled at first sight. Carrying a disability certificate at all times is a means to avoid or alleviate conflict when people suspect that someone is not a bona fide disabled person. The certificates are, in addition to a valid ticket, the documents that entitle people to travel in the “handicapped compartments”. Travelling in reserved compartments without the right documents (occasionally checked by ticket officers on the train and platforms) is a breach of the law (section 155 in the Railways Act), and punishable with a fine (500 rs, about ten US dollars) and jail sentence (3 to 6 months).
The certificate can be obtained at Sir Jamshedjee Jeejeebhoy hospital, a government hospital in the city centre, a tedious process consisting of medical evaluations and complex bureaucracy. During this process, people are allocated a percentage of disability. For example, profoundly deaf people who don’t speak get 100% allocations. There is not a clear document available on who is allowed in the HC, only some general guidelines: a senior ticket officer told me that a disability of a minimum of 40% is necessary, and that people who can see from one eye or have a missing digit are not allowed in, however such people carry a certificate (with their low percentage) and could often be seen in the compartment. People with cancer and pregnant women in advanced pregnancy are also allowed. Similar to the disability certificate, cancer patients carry a “cancer card” and pregnant women have to carry a doctor’s certificate with their due date.
In negotiating or granting access to the compartments, people make use of these certificates in a strategic way. As described above, the lack of a certificate is used as argument to keep people out. However, some people without certificates are allowed by conductors and fellow travellers because they are disadvantaged in crowds due to young age (schoolchildren) or old age (elderly people), sexual harassment (hijras), or weakness (illness/injuries). (However, not all of these travellers are regarded as having the right to occupy a seat). In yet other cases, the certificate or other documentation does not convince fellow travellers of someone’s right to enter (such as in the case of pregnancy) or occupy seats (such as in the case of deaf people).
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.
It is very hard to outline an overview of hierarchies that are produced, and such hierarchies are necessarily vague and subjective. I am basing the following enumeration on emic classifications derived from deaf people who were my main interlocutors. In general, people with severe leg and back problems (with certificate), very old people (without certificate), very sick people (without certificate, but cancer patients have a certificate) and blind people (with certificate) often come higher in the hierarchies. They are followed by moderately sick people (without certificate), people with minor disabilities (with certificate) and deaf people (with certificate): these latter groups’ presence in the compartments is not so much contested, but their getting seats is ambivalent. Next are some ambivalent categories without certificate: (authorized) escorts of people with disabilities, schoolchildren, and pregnant women (who often stand near the doors). Yet lower on the hierarchy, there are the people who sit on the floor near the door: hijras [i], very poor people without disability, and people with leprosy.
I had the impression that most of the time it is not entirely clear what kind of disability or illness someone has. Decisions on what categories such as “very sick”, “moderately sick” or “very poor” mean are based on what people see and how much suffering people demonstrate or argue that they are experiencing. There is both collective and individual variation in opinions, so hierarchies are competing, leading to conflicts. Whether someone will get a seat depends on a number of other factors: having friends or acquaintances in the compartment or not, passengers’ mood and energy levels, how clean someone looks, how miserable someone looks, and the presence of sexism, classism and audism (oppression of deaf people because of their deafness). In producing hierarchies, there are inter-individual differences. Hierarchies are fluid too: who is accepted in the compartment and who will get a seat is contextual, decided on the spot, and not a fixed given reality.
The occupation of seats
In contrast to the presence of (vague) rules about who can enter the handicapped compartment, there are no rules about the occupation of seats, thus people manage the allocation of seats themselves. There are certain codes of conduct on the Mumbai trains (in general, and not just in the handicapped compartments) as to how to manage the occupation of seats: people circulate and swap seats, based on mutual agreement: someone stands for a while (perhaps until a particular train station) and then swaps with another person who then stands, or claims a seat from someone who will alight at a certain stop. In the handicapped compartments, seat-swapping happens particularly between people who know each other, such as friendly groups of disabled people, and deaf people make use of the wide deaf network in Mumbai. When people have to alight the train, passengers in the handicapped compartment often take it upon themselves to allocate their seats rather than just step off and leave it to the rest to sort out, as such strengthening their connections and friendships, or expressing their views on the hierarchies.
Deaf people narrated that when it gets crowded or when it is time to alight, it is sometimes hard to assess to whom to offer their seat: a deaf friend, a disabled person, a weak-looking person, a very old person, or a pregnant woman, for example. It was said that an important criterium in such decisions were existing friendships and when people convincingly demonstrate or argue suffering, such as explaining that they are really in pain or very tired after having stood at their work all day. There is a tipping-point in this practice of empathy/morality which is mediated by poverty though, exemplified by a low tolerance towards ticketless non-disabled people who wear untidy clothes and/or smell. If the disability or misery is present despite having means to care for oneself, then people are more sympathetic.
Conflicts and grudges emerge when deaf people do not want to give up seats for disabled people. Indeed, in addition to seat-swapping, it is expected that people promptly pass on seats to people whose bodily conditions put them higher in the hierarchies that exist in the compartments, such as people with a disability in their leg(s). However, deaf people complained that they were often regarded as an easy target by people who were looking for seats, and that hearing people with minor disabilities (such as a missing digit) are usually not the first to be approached. Switching seats after a number of stops was presented by some as a golden middle way to react to a request: not immediately offering the seat to a disabled person but promising or offering it to them after a number of stops (for example, by gesturing “later” or “5 minutes”); as such trying to negotiate a higher position on the hierarchy of seat-deserving people than they are initially ascribed by the other person, but also showing respect for the other person.
Keeping out encroachers
The regular disabled passengers in the compartment generally agree on who are definitely unaccepted (as opposed to ambivalent) unauthorized travellers and attempt to defend the space of the compartment against them: off-duty policemen who misuse their power; people who fake disabilities, injuries or pregnancy, or carry fake disability certificates; and extremely poor people without disabilities who smell. Problems particularly occur when a mass of encroachers is present during rush hour. Disabled people have difficulties entering or leaving the compartments, and even fall due to pushing.
Commuters monitor the use of the space in the compartment and implement problem-solving mechanisms and sanctions such as sending people to the space near the door, sending them out verbally or physically, pulling the emergency chain to stop the train, or reporting people to the railway police. Sending out encroachers is most effective when the compartment is not ‘attacked’ at once by a mass of encroachers. When there is a mass of encroachers, the latter have the benefit of their number.
During the past few years, actions by the Railway Protection Force (RPF) in the handicapped compartments have led to fines, arrests and imprisonments. The RPF’s interventions, actions and fines have not proved a sufficient deterrent, leading to huge dissatisfaction and regular protest actions organised by the above-mentioned Disability Advocacy Group (DAG). The DAG for example put up posters in the compartments and on the platforms declaring the compartment as a third-class compartment or a dustbin which everyone is allowed to enter; organised peaceful protests outside train stations; and members forcibly checked disability certificates (they acted as ticket officers and their actions were endorsed and supported by fellow disabled travellers so that pressure was exerted upon people in the compartments to show their certificates).
In the handicapped compartments there is an absence of clear government regulations and effective enforcements about who can enter the compartments, and there is a total absence of rules about who can sit. Thus commuters in the handicapped compartments create (informal) rules for themselves and enforce these rules upon others. These rules take the shape of informal hierarchies based upon perceived and actual bodily abilities and characteristics. As I have noted, these hierarchies are produced in the moment, through temporary and enduring relationships between people. I contend that even if Bhaskar’s suggestion of a reserved-seat area in the compartment was implemented, people in the compartment would probably continue producing hierarchies in addition to, or instead of, governmental regulations. They do so in order to create inhabitable worlds for the duration of their daily commute.
[i] They do not travel in the reserved compartment systematically — they also travel in the ladies compartments and in first class compartments — but sometimes they come in when it is crowded in other compartments. Most of the times they sit on the floor near the door (unless they are disabled), as such not entering the main body of the compartment and avoiding conflict.
Annelies Kusters works as a postdoctoral researcher at the Max Planck Institute for the Study of Religious and Ethnic Diversity in Göttingen. She has research experience in Ghana, India and Surinam. She is particularly interested in deaf space and deaf geographies, deaf ontologies and epistemologies, mobilities, transnationalism, language practices and language ideologies. She may be reached by email at annelieskusters @ gmail.com
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. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).
Epigenetics and Society: Potential, Expectations and Criticisms – A Special Issue of New Genetics and Society by Francis Mckay
Hi all, Part 1 of this month’s In the Journals Roundup has already been posted here. Part 2 will be coming soon. In addition, you can find below a special issue of New Genetics and Society on the topic of “Epigenetics and Society: Potential, Expectations and Criticisms”.
In this paper, I firstly situate the current rise of interest in epigenetics in the broader history of attempts to go “beyond the gene” in twentieth-century biology. In the second part, after a summary of the main differences between epigenetic and genetic mutations, I consider what kind of implications the sui generis features of epigenetic mutations may have for the social sciences. I focus in particular on two sites of investigation: (a) the blurring of the boundaries between natural and social inequalities in theories of justice and their possible implications for public policy and public health and (b) a deepening of the notion that the constitution of the body is deeply dependent on its material and socially shaped surroundings (“embodied constructivism”). In conclusion, I advance some cautionary reflections on some of the (known and unprecedented) problems that the circulation of epigenetics in wider society may present.
How the genome got a life span
Martine Lappé & Hannah Landecker
In the space of little more than a decade, ideas of the human genome have shifted significantly, with the emergence of the notion that the genome of an individual changes with development, age, disease, environmental inputs, and time. This paper examines the emergence of the genome with a life span, one that experiences drift, instability, and mutability, and a host of other temporal changes. We argue that developments in chromatin biology have provided the basis for this genomic embodiment of experience and exposure. We analyze how time has come to matter for the genome through chromatin, providing analysis of examples in which the human life course is being explored as a set of material changes to chromatin. A genome with a life span aligns the molecular and the experiential in new ways, shifting ideas of life stages, their interrelation, and the temporality of health and disease.
Epigenetic determinism in science and society
Miranda R. Waggoner & Tobias Uller
The epigenetic “revolution” in science cuts across many disciplines, and it is now one of the fastest-growing research areas in biology. Increasingly, claims are made that epigenetics research represents a move away from the genetic determinism that has been prominent both in biological research and in understandings of the impact of biology on society. We discuss to what extent an epigenetic framework actually supports these claims. We show that, in contrast to the received view, epigenetics research is often couched in language as deterministic as genetics research in both science and the popular press. We engage the rapidly emerging conversation about the impact of epigenetics on public discourse and scientific practice, and we contend that the notion of epigenetic determinism – or the belief that epigenetic mechanisms determine the expression of human traits and behaviors – matters for understandings of the influence of biology and society on population health.
Metaphors in search of a target: the curious case of epigenetics
Aleksandra Stelmach & Brigitte Nerlich
Carrying out research in genetics and genomics and communicating about them would not be possible without metaphors such as “information,” “code,” “letter” or “book.” Genetic and genomic metaphors have remained relatively stable for a long time but are now beginning to shift in the context of synthetic biology and epigenetics. This article charts the emergence of metaphors in the context of epigenetics, first through collecting some examples of metaphors in scientific and popular writing and second through a systematic analysis of metaphors used in two UK broadsheets. Findings show that while source domains for metaphors can be identified, such as our knowledge of electrical switches or of bookmarks, it is difficult to pinpoint target domains for such metaphors. This may be indicative both of struggles over what epigenetics means for scientists (natural and social) and of difficulties associated with talking about this, as yet, young field in the popular press.
Epigenetics: localizing biology through co-laboration
This paper reports on a co-laborative laboratory ethnography in a molecular biology laboratory conducting research on environmental epigenetics. It focuses on a single study concerned with the material implications of social differentiation. The analysis briefly raises biopolitical concerns. Its main concern lies with an understanding of the human body as local in its working infrastructure or “inner laboratory”, an understanding that emerges from the co-laborative inquiry between biologists and anthropologist. This co-laborative mode of inquiry raises productive tensions within biology as to the universal or local nature of human nature and within anthropology as to the status of human biology within social theory. The paper cannot resolve this tension. Rather it explores it as an epistemic object in the context of interdisciplinarity, ontography and co-laboration. In concluding, it specifies co-laboration as temporary, non-teleological joint epistemic work aimed at producing new kinds of reflexivity.
On an evening in the summer of 2009, I was picked up by Norberto, a friend I had met during ethnographic fieldwork in Cuenca, Ecuador. Since it was my first time in his truck, Norberto showed me how he drove solely with his hands by braking and accelerating with his thumbs through the steering wheel. “Mira (Look), I don’t need my legs at all,” he laughed. When we arrived at the Coliseo Jefferson Perez, the main indoor arena in Cuenca, for his basketball practice, Norberto greeted several men who joked around as they lifted themselves out of their vehicles and into their wheelchairs that were stored in back seats or truck beds. A taxi pulled up to the front entrance and out came Enrique, a well-known panhandler in downtown Cuenca who was born without feet. He maneuvered his way into his chair and rolled alongside his teammates. Norberto ushered me toward the front entrance of the building. “Achachay,” he said, noting the damp chill. Achachay is a Kichwa term Cuencanos reflexively utter when the sun dips below the mountains.
Through my observations and participation in this weekly wheelchair basketball practice, I gained insight into how technology becomes deeply intertwined with everyday embodied experience among people with physical disabilities in highland Ecuador. While these athletes came from different socioeconomic and professional backgrounds—they were an appliance factory technician, a photo store owner, a fast food worker, a street entrepreneur, for example—the camaraderie they shared as competitive athletes following recovery from a serious injury cut across ethnic and class boundaries. Most striking was how their athletic performance signaled a particular type of masculinity through engagement with new technologies and bodily practices. Wheelchair sports provided an outlet for these athletes to demonstrate their masculinity by aggressively competing against and cooperating with other men. For me, the basketball court offered an intriguing site to explore how wheelchair athletes reconfigured the capabilities of their bodies.
To make sense of the complex journey that these disabled wheelchair athletes experience, I draw on Lenore Manderson’s (2011) concept of “rehabituation.” In place of a medically-oriented framework of rehabilitation, Manderson argues that people forge new types of embodiment that involve the “recreation of habitus” following the bodily disruptions of disease, injury, or loss of limbs (2011:96). Habitus, which refers to skills, habits, and practices anchored in the body (Bourdieu 1977), is particularly useful in understanding how people who have experienced bodily disruptions craft new embodiments. Habitus is acquired through learning, exists beneath the level of discourse, and varies by social location (Wacquant 2011).
In contrast to the way that conventional forms of rehabilitation tend to privilege repair of body parts or emphasize psychological recovery, turning toward habitus and habituation encourages us to think about the tactics and practices people draw on to inhabit their everyday worlds. In my research, I show how newly formed embodiments are shaped by subjective experiences, locally available knowledge about impairment, and broadly shared interactions with the built environment. In this post, I consider how processes of rehabituation reflect new enactment of gender roles as well as shifting relationships with technology. These athletes challenge the popular beliefs that disability is inherently emasculating in part by reformulating their identity against normative meanings of manhood in Ecuador. Thus, the concept of rehabituation helps account not just for individual responses to injury, but also for how people internalize existing social beliefs about the body. People I spoke with said that interactions with medical institutions played a minimal role in their processes of recovery. Many had no formal diagnosis and received little or nothing in terms of financial compensation or support. Rather, the new skills they learned to deal with their bodily disruptions (e.g. using a cane, prostheses, or assistive technology) were acquired informally at disability organizations or through friends with similar experiences. Collectively, these athletes help us understand how communities of people with disabilities in highland Ecuador strive not only to imagine new social formations, but also to draw on technological resources to transform their bodies and the materiality of the world they inhabit.
Adaptive Athletics as Rehabituation: “The Wheelchair is Our Life Now”
On the same evening in Cuenca, I chatted with athletes as they prepared to practice. After entering the arena by wheeling across a makeshift ramp comprised of a heavy board laid across steps leading down to the court, a few men wrapped their hands with athletic tape. Others heaved themselves out of their “everyday” wheelchairs and into their “athletic” chairs. Before entering the court, each player strapped a thick band across their lap designed to prevent them from being thrown from their chair—which worked most of the time. (I later learned that these specially adapted athletic wheelchairs had been donated gradually over a period of five years from various organizations in Colombia and the United States.) They began to stretch, pivot in their chairs, pass, and cajole each other to take shots at the hoop. The athletes ranged in age from those in their early 20s to their 50s with varying levels of ability to push and dribble. I learned that while most had recovered from some type of spinal cord injury, others had congenital impairments. People with no physical impairments also participated at times, such as the players’ sons or friends—I got a chance to borrow a wheelchair and play a few times when an extra player was needed. As I learned about the lives of these athletes, people often discussed the aftermath of serious injuries or impairment and the ways they reinvent and internalize new ways of acting, feeling, and moving. The new orientations ranged from adjusting to using a wheelchair or walking aid in the streets to profound shifts in being interdependent with their wives or children.
As I engaged in wheelchair basketball, as an observer and as a player, I witnessed traces of bodily training and reorientation both on and off the court. Playing a sport like wheelchair basketball requires a complex coordination of bodily practices that cannot be easily emulated. In addition to the difficulties of shooting, passing, and dribbling while simultaneously pushing a wheelchair, rules and strategies particular to the sport make it difficult for novices to master. For instance, legal forms of “dribbling” entail either bouncing the basketball next to one’s chair, or taking no more than two pushes with the ball in the lap. Although a few athletes occasionally received formal instruction from their involvement in Ecuador’s national wheelchair basketball team (la selección), for the most part the players from Cuenca learned through sheer effort on the court.
How do these Ecuadorians relate to their bodies after becoming involved in disabled sports? While wheelchairs are sometimes conceived as a bulky form of adapted technology, the phenomenology of wheelchair sports helps illustrates how deeply people with mobility impairments can become intertwined with their wheelchairs. The notion that wheelchairs can be conceptualized as something more than simply tools became clear when I spoke with Francisco, a laid back younger member of the basketball team. While his natal family played a key role in his initial recovery, the basketball team became his most important social network. Over beer and plantain chips, Francisco described how he worked as a miner in a rural province of coastal Ecuador when his accident occurred. His team was drilling for a vein of gold with a massive drill when a two ton slab of rock fell from the roof and crushed his legs.
Francisco’s story touches on the social dimensions of his experiences of rehabituation. After a lengthy (and costly) period of recovery in Cuenca, Francisco eventually joined the wheelchair basketball team. He called it the “best form of therapy,” and credited it with helping him recover physically and psychologically from his injury. “The wheelchair is our life now,” he explained, “and the chair is our feet.” Francisco suggested that his experience of being in the world was mediated almost entirely through his wheelchair. He did not feel that he “transcended” his impairment, but rather revalued his own body in different ways. Physically, he had developed the strength and dexterity in his arms to lift his body weight into his car. The way that wheelchair technology becomes embedded into the way that these athletes train their body speaks to what some disability theorists have posited as the “corporealization of the cyborg” by way of a non-traditional embodiment (Kuppers 2000). In these narratives, athletes appropriate wheelchair technologies as their habitus is continuously altered.
As wheelchairs become integral parts of their lives, many of the people I met conceive of personal success in terms of recovery, not in terms of rehabilitation. The sentiment among the athletes I met was that while rehabilitation requires some relationship with health professionals, their goals focused more on social participation through new ways of being in the world. Recovery meant the ability to participate in certain spheres of life—going to church, holding paid employment—but with a new orientation in terms of how they relate to their body. Speaking in general terms about recovery, my interlocutors suggested that successful adjustment occurs when people discard their prior modes of bodily practices as people capable of walking.
For wheelchair basketball players, their ability to use adaptive technologies is linked to their performance of masculinity. Like his peers, Francisco relished opportunities to show how disabled Ecuadorians were capable of fulfilling social expectations of masculinity. He joked about how he measured up to other disabled men based on his athletic prowess as well as his ability to maintain paid employment in a factory (that makes industrial kitchen equipment). Francisco explained that describing his ability to play competitive sports dispelled commonly-held beliefs of non-disabled people about the limitations of having a disability. “I met one person who was sure we were going to kill ourselves,” he said me with a measured grin, “and others who are scared to death that we’ll hurt ourselves, but we fall and we get up.” Francisco felt that the confidence gained through the physicality of playing basketball had encouraged athletes to venture out into clubs, restaurants, and parties in Cuenca. Like disabled athletes I’ve met in other parts of Ecuador and the United States, these athletes challenge the idea that they are fundamentally different from other athletes.
Garland-Thomson (2007) suggests that stories of disabled athletes offer counter-narratives to “personal tragedy” or “pity” themes in popular discourse. In analyzing how male athletes make meaning of their roles on the US Wheelchair Rugby team portrayed in the film Murderball (Shapiro & Rubin 2005), Garland-Thomson calls our attention to the “ultra-masculinity” performed by men with ideal bodies for the sport, with a storyline that “disability can provide a meaningful life in which ones thrives rather than languishes” (Garland-Thomson 2007: 115). While such storylines can be misleading in that they offer simplistic explanations for what constitutes a meaningful life, most of the basketball players I met subscribed to the idea that playing sports enabled them to challenge the expectations of people around them. Yet is it also important to consider the ramifications of naively celebrating recovery of masculinity among wheelchair athletes. As other scholars have pointed out, we risk leaving the heteronormative masculinity of these spaces unexamined (Barounis 2009). While these are open research questions, it was clear how wheelchair technology played a key role in defining what it meant to be a disabled man.
Inhabitable Inclusionary Spaces
A few months after my first encounter with wheelchair basketball, Norberto shed light on a different domain of adaptations to his spinal cord injury: the architecture and daily practices in his household. Medical models of rehabilitation often neglect the role played by environmental factors in producing disability. Approaching disability from the perspective of rehabituation orients us toward how people create habitable spaces at home. Another member of the basketball team, Norberto, gave me a tour of his family’s farm and the new house he was in the process of constructing. It represented the culmination of his vision for living on his own terms: accessible design, family-oriented, and mostly self-sufficient. Norberto pointed out the fruit trees and creek running through the back yard, mentioning that unlike the house he inhabited as a child, this house would have electricity.
What Norberto really wished to highlight were the modifications he had planned and implemented. He pointed out the accessible features of the house: zero-grade entrances, wide bathroom doors, and a generally open architecture that would make using a wheelchair much easier. Remittances from an older brother working in the United States had also helped him pay for his truck, and being able to drive enables Norberto to deliver wooden figurines that he sells in the tourist market in downtown Cuenca. He had improved his quality of life considerably by designing a more inclusive home environment that was easier on his body. Rather than emphasizing conventional notions of rehabilitation, Norberto’s narrative demonstrates how a new sense of self emerged through creatively using assistive technologies and reorienting his life toward physical health.
Norberto characterized his family as campesinos, indicating that their household income mainly came from farming (in addition to remittances). In relation to the fairly rigid social hierarchies of race, class and patronage that have been documented by anthropologists working in Cuenca (Miles 1991), Norberto had minimal palancas, or social ties that would enable upward mobility. Limited income led to a gradual, piecemeal construction of his new house unaided by architects and carried out by family members. His socioeconomic status placed in the middle among the wheelchair basketball players, which ranged from one player whose family owned several businesses in Cuenca to Enrique, the panhandler who lived in a remote, modest dwelling.
Beyond changing ideas about masculinity, there are larger social dimensions at play that extend this discussion about habitus into social constructions of disability in Cuenca. Playing sports in public has gradually improved the image of people with disabilities, according to Norberto, who explained that team members have been seen in the local newspapers and occasionally are recognized on the street by strangers. Norberto links increased public awareness to the change in attitudes that he has seen in the last fifteen years. Whereas fifteen years ago people would offer him unsolicited money on the street, in recent years they tended to treat him with more respect. The new world he envisioned depended both on learning new habits but also a new orientation toward living in the city. Whereas at first he railed against taxi drivers that would not pick him up or security guards that prevented his entry into bars or restaurants, over time Norberto and those in similar circumstances agitated against what they perceived as unjust exclusionary practices, a theme I have explored in more detail elsewhere (Rattray 2013). Disabled athletes and a handful of other disability activists have taken it upon themselves to directly challenge what they perceive as a system of able-bodied privilege in Cuenca.
The Disruptive Potential of Rehabituation
Considering how people in Cuenca proactively shape their environments in ways that accord with new forms of habitus offers an intriguing example for medical anthropologists studying disability and embodied differences. I argue that disabled people have been highly proactive in using technical adaptations and deliberate strategies to impact the social construction of space in Cuenca. By sharing tactics of recovery and strategies for disrupting the dominant conventions of able-bodied spaces, wheelchair athletes have attempted to alter perceptions of disability and gender. Ethnographic observation can help illuminate some of these dynamics in ways that interviews or medical approaches to rehabilitation may not. I’m hopeful that the analytical flexibility of Manderson’s notion of rehabituation points medical anthropologists in novel directions, such as linking bodily difference to studies of urban infrastructure and new social movements. Rehabituation offers a powerful means to track the rippling effects of individual bodily disruptions in local worlds.
Acknowledgements: I appreciate the wheelchair athletes in Cuenca who shared their stories and the basketball court with me. I’m also grateful for the insightful editorial work from Emily Cohen and Michele Friedner, as well as comments from Wendy Vogt.
Barounis, Cynthia. 2009. “Cripping Heterosexuality, Queering Able-Bodiedness: Murderball, Brokeback Mountain and the Contested Masculine Body.” Journal of Visual Culture 8(1):54-75.
Bourdieu, Pierre. 1977. Outline of a Theory of Practice. Cambridge: Cambridge University Press.
Kuppers, Petra. 2000. “Addenda? Contemporary Cyborgs and the Mediation of Embodiment.” Body, Space and Technology 1(1): (refeered e-journal).
Manderson, Lenore. 2011. Surface tensions: surgery, bodily boundaries, and the social self. Walnut Creek, CA: Left Coast Press.
Miles, Ann. 2004. From Cuenca to Queens : an anthropological story of transnational migration. Austin: University of Texas Press.
Rattray, Nicholas A. 2013. “Contesting Urban Space and Disability in Highland Ecuador.” City & Society 25(1): 25-46.
Shapiro, Dana Adam and Henry-Alex Rubin (directors). 2005. Murderball. New York: Think Film, Co.
Wacquant, Loïc. 2011. “Habitus as Topic and Tool: Reflections on Becoming a Prizefighter.” Qualitative Research in Psychology 8(1): 81-92.
Nicholas Rattray is a postdoctoral fellow in the Center for Health Communication and Information at the Richard L. Roudebush Veterans Affairs Medical Center. Trained as a medical anthropologist, his research examines the cultural dimensions of disability, space and embodiment in highland Ecuador. He is currently investigating processes of reintegration among U.S. military veterans with traumatic brain injuries and the provision of acute stroke care within VA clinical microsystems.
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. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).
Hi all, here’s part one of this month’s roundup. Enjoy.
Social theory generated in and about Singapore lies in psychic depths and archive fevers of an immigrant society subjected to accelerated social changes that devalue the lives of those marked by aging. Drawing on ethnographic fieldwork in Singapore, weaving together four kinds of data sets—gerontology psychiatric research and intervention; changing ritual forms; analytically phenomenological, paraethnographic theater and stories; and student video and drama projects—I argue that new literacies, pedagogies, and practices can foster enriched community life in posttraumatic, aging societies. Focusing on meaning and affect, and referencing Derrida on hauntology, archive fever, sur-vie, and grammatology (as syntax of social configurations within which aging occurs, or, sociocultural texts, narratives, and symbols), I build on the ethnographic literatures on aging and explore strong metaphors of monstrous history (taowu), ghosts (hantu), obliviousness brought by prosperity (fat years), and intercultural repetition compulsions of unfilial children (Lear).
The delivery of resources to citizens in the global South is increasingly managed through international partnerships. As systems of plural governance, such arrangements are characterized by alignments, accommodations, and conflicts between partners’ respective interests. This article focuses on partnerships between the Kenyan Ministries of Health and organizations funded by PEPFAR (the President’s Fund for AIDS Relief), drawing on fieldwork with Kenyan government health managers. These partnerships were based on a separation between the ability to provide resources and the right to administer them. For Kenyans, partnerships animated a politics of sovereign responsibility in which they often felt a deep sense of managerial disenfranchisement. For their foreign collaborators, partnership relations legitimized the interventions they organized. This politics of sovereign responsibility reconfigured the importance of the state on the basis of its role in delivering resources within global relations of inequality.
A laboratory-engineered, “chimeric” dengue fever vaccine entered late-stage clinical trials in the late 2000s. One possible way of interpreting the arrival of a technology like this is to see it as the end point of a unified global project. Alternatively, it can be understood as a “cosmopolitical event.” Instead of reflecting unity, cosmopolitical events magnify social and technical differences, and they afford space to contemplate alternative forms of life. Drawing on fieldwork with dengue researchers in Puerto Rico, Nicaragua, and Cuba, I argue that the chimera appeared at a liminal moment in dengue science. It prompted researchers to contemplate how the divergent logics of pharmaceutical capital, humanitarianism, and biosecurity shaped their work as well as to imagine how that work might otherwise proceed. I conclude by suggesting that attention to cosmopolitical events puts the anthropology of global health into closer conversation with analyses of other global phenomena.
Published as the companion piece to Observations upon Experimental Philosophy (1666), Margaret Cavendish’s fantastical travelogue Blazing World (1666) dramatizes and interrogates many of the ideas that the author put forth in her philosophical writing. Cavendish might have chosen the travel genre as the companion piece to her treatise on natural philosophy for a variety of reasons. One primary motivation, this essay argues, is that travel has intriguing thematic and epistemological links to her organic-materialist theory of the universe. Indeed, travel is built into Cavendish’s ontology: motion is a precondition for being and knowing. With this in mind, Blazing World’s engagement with the voyage genre becomes particularly important. At the same time, Blazing World is more resolutely experimental than Observations in that it investigates the possible loopholes and ambiguities of her materialist theory of nature. Cavendish is fascinated by how material bodies compose ideas, and how ideas take material form, and it is some of her recurring questions about the materiality and mobility of thought that she explores in Blazing World.
Following a recent scholarly trend that conceives of science fiction (SF) as a complement to science and technology studies, this essay builds on Gilles Deleuze and Félix Guattari’s concept of minor literature to analyze SF as a mode of biophysical, not just social, experimentation. Minor SF experiments with scientific elements and potentials to embed culture and the human body in unstable biophysical micro-and macro-environments. This approach will be illustrated by analyzing Greg Bear’s novels Blood Music (1985) and Darwin’s Radio (1999) in which humanity undergoes radical transmutations as a result of viral genetic infections.
Present Signs, Dead Things: Indexical Authenticity and Taxidermy’s Nonabsent Animal
Helen Gregory, Anthony Purdy
Contemporary art’s recent turn to taxidermy as a sculptural medium aims both to unsettle earlier traditions of realist taxidermy and to allow new explorations of the troubling authenticity derived from the recycling of animal bodies. Developing an analogy between the preserved and mounted animal skin and Roland Barthes’s realist account of the photograph as an emanation of the referent, this essay turns from art to literature to introduce a third, mediating term, dermography, in response to the insistent presence of skin in the questions raised by the new taxidermy. The authors propose the ontological category of the nonabsent animal as an aid to understanding a temporally defined punctum associated with an authenticity grounded in the index.
New Zealand leads the world in rates of home dialysis use, yet little is known about the experience of home dialysis from the patient’s perspective. This article contributes to the literature on the self-care of dialysis patients by examining the relevance of the concept of the machine–body and cyborg embodiment for the lived experience of people with end-stage renal failure. The article, which presents a discussion of 24 in-depth interviews undertaken between 2009 and 2012, shows that although dialysis therapy is disruptive of being and time, study participants experience home dialysis in terms of flexibility, control and independence. While they do not use the term machine–body as a descriptor, the concept resonates with felt experience. Data also indicate that positive experience of home dialysis is relative to socio-economic positioning and the lived relation of patients to others, necessitating further research to examine these factors.
Over the past decades, there has been a significant increase in prescriptions of psychotropic drugs for mental disorders. So far, most of the explanations of the phenomenon have focused on the process of medicalization, but little attention has been cast towards physicians’ day-to-day clinical reasoning, and the way it affects therapeutic decision-making. This article addresses the complex relationship between aetiology, diagnosis and drug treatment by examining the style of reasoning underlying prescribing practices through an historical lens. A genealogy of contemporary prescribing practices is proposed, that draws significant comparisons between 19th-century medicine and modern psychiatry. Tensions between specific, standardized cures and specific, idiosyncratic patients have been historically at play in clinical reasoning – and still are today. This inquiry into the epistemological foundations of contemporary drug prescription reveals an underlying search for scientific legitimacy.
On resilience and acceptance in the transition to palliative care at the end of life
John I MacArtney, Alex Broom, Emma Kirby, Phillip Good, Julia Wootton, Patsy M Yates, and Jon Adams
Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine’s general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients’ lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants’ experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.
The harm reduction policy of Taiwan has been considered a success. However, the HIV incidence among injection drug users declined before the nationwide needle and syringe program and drug substitution treatments were implemented. Thus, other factors in the policy might have contributed to its success. Some authors have suggested that education may have played a pivotal part. In this research, the purported significance of education in the success of the policy is conceptualized by reviewing the studies on harm reduction in Taiwan and reflecting upon my own fieldwork. Moreover, relevant literature is used as reference to reformulate this notion of education. This article shows that harm reduction education may be conducted in numerous forms, most of which are non-formal, improvisational, and contingent. Non-governmental organizations may play a role, but more actors, strategies, infrastructures, and interactions should be considered. This article draws from actor-network theory and refines the current thesis that attributes the policy success to education by utilizing three reflections, namely, appreciating materiality and spatiality, recognizing covert actors in the networking, and treating education as an outcome rather than a means. In conclusion, looking at education as a form of networking offers theoretical insight that increases understanding of its participants, mechanisms, processes, and permutations.
The role of assessment packages for diagnostic consultations: A conversation analytic perspective
Camilla B Rossen, Niels Buus, Egon Stenager, and Elsebeth Stenager
This article reports a conversation analysis of assessment package consultations. Healthcare delivery packages belong to a highly structured mode of healthcare delivery, in which specific courses of healthcare interventions related to assessment and treatment are predefined, both as to timing and content. Assessment packages are widely used in an increasing number of medical specialities; however, there is a lack of knowledge about how packaged assessment influences the interaction between doctor and patient. In this study, we investigate the final consultation in assessment packages, which is when the final clarification of the patient’s symptoms takes place. The primary data of the study were eight audio recordings of consultations, and the secondary data were ethnographic field descriptions. In most consultations, packaged assessment was a resource as it provided fast and efficient clarification. In most cases, clarification was treated as good news since it either confirmed the absence of a serious disease or resulted in a diagnosis leading to relevant treatment offers. However, in some cases, clarification was not perceived as good news. This was the case in consultations with patients whose goal was to leave the consultation with clarification in the form of a definite diagnosis, but who were not offered such clarification. These patients negotiated the outcome of the consultation by applying implicit and explicit pressure, which induced the doctors to disregard the boundaries of the package and offer the patient more tests. The study highlights some of the problems related to introducing narrow, specialized package assessment.
Postpartum depression in refugee and asylum-seeking women in Canada: A critical health psychology perspective
Amy Brown-Bowers, Kelly McShane, Karline Wilson-Mitchell, and Maria Gurevich
Canada has one of the world’s largest refugee resettlement programs in the world. Just over 48 percent of Canadian refugees are women, with many of them of childbearing age and pregnant. Refugee and asylum-seeking women in Canada face a five times greater risk of developing postpartum depression than Canadian-born women. Mainstream psychological approaches to postpartum depression emphasize individual-level risk factors (e.g. hormones, thoughts, emotions) and individualized treatments (e.g. psychotherapy, medication). This conceptualization is problematic when applied to refugee and asylum-seeking women because it fails to acknowledge the migrant experience and the unique set of circumstances from which these women have come. The present theoretical article explores some of the consequences of applying this psychiatric label to the distress experienced by refugee and asylum-seeking women and presents an alternative way of conceptualizing and alleviating this distress.
Neighborhood socioeconomic context and change in allostatic load among older Puerto Ricans: The Boston Puerto Rican health study
Marcia P. Jiménez, Theresa L. Osypuk, Sandra Arevalo, Katherine L. Tucker, Luis M. Falcon
Neighborhood context may influence health and health disparities. However, most studies have been constrained by cross-sectional designs that limit causal inference due to failing to establish temporal order of exposure and disease. We tested the impact of baseline neighborhood context (neighborhood socioeconomic status factor at the block-group level, and relative income of individuals compared to their neighbors) on allostatic load two years later. We leveraged data from the Boston Puerto Rican Health Study, a prospective cohort of aging Puerto Rican adults (aged 45–75 at baseline), with change in AL modeled between baseline and the 2nd wave of follow-up using two-level hierarchical linear regression models. Puerto Rican adults with higher income, relative to their neighbors, exhibited lower AL after two years, after adjusting for NSES, age, gender, individual-level SES, length of residence, and city. After additional control for baseline AL, this association was attenuated to marginal significance. We found no significant association of NSES with AL. Longitudinal designs are an important tool to understand how neighborhood contexts influence health and health disparities.
Association of food environment and food retailers with obesity in US adults
Renfei Yan, Nathaniel D. Bastian, Paul M. Griffin
The food environment has been shown to be a factor affecting the obesity rate. We studied the association of density of food retailer type with obesity rate in U.S. adults in local regions controlling for socioeconomic factors. Parametric nonlinear regression was used on publically available data (year=2009) at the county level. We used the results of this association to estimate the impact of the addition of a new food retailer type in a geographic region. Obesity rate increased in supercenters (0.25–0.28%) and convenience stores (0.05%) and decreased in grocery stores (0.08%) and specialized food stores (0.27–0.36%). The marginal measures estimated in this work could be useful in identifying regions where interventions based on food retailer type would be most effective.
How community physical, structural, and social stressors relate to mental health in the urban slums of Accra, Ghana
Meredith J. Greif, F. Nii-Amoo Dodoo
Urban health in developing counties is a major public health challenge. It has become increasingly evident that the dialog must expand to include mental health outcomes, and to shift focus to the facets of the urban environment that shape them. Population-based research is necessary, as empirical findings linking the urban environment and mental health have primarily derived from developed countries, and may not be generalizable to developing countries. Thus, the current study assesses the prevalence of mental health problems (i.e., depression, perceived powerlessness), as well as their community-based predictors (i.e., crime, disorder, poverty, poor sanitation, local social capital and cohesion), among a sample of 690 residents in three poor urban communities in Accra, Ghana. It uncovers that residents in poor urban communities in developing countries suffer from mental health problems as a result of local stressors, which include not only physical and structural factors but social ones. Social capital and social cohesion show complex, often unhealthy, relationships with mental health, suggesting considerable drawbacks in making social capital a key focus among policymakers.
Buenos Aires׳ informal recyclers (cartoneros) confront multiple health hazards in their work. Based in a survey with (n=397) informal recyclers, this study establishes that these workers experience uneven health landscapes as evidenced through their health outcomes, the social determinants of their health, and their living and working environments. I argue that the analytical framework of urban political ecology can provide insights to the ways that the urban environments where cartoneros live and work are socially-constructed phenomena, drawing on concepts of crisis, metabolism, and multi-scalar analyses.
‘Therapeutic landscapes’ and the importance of nostalgia, solastalgia, salvage and abandonment for psychiatric hospital design
Victoria J. Wood, Wil Gesler, Sarah E. Curtis, Ian H. Spencer, Helen J. Close, James Mason, Joe G. Reilly
We examine emotional reactions to changes to medical spaces of care, linked with past experiences. In this paper we draw on findings from a qualitative study of the transfer of psychiatric inpatient care from an old to a newly built facility. We show how the meanings attributed to ‘therapeutic landscapes’ from one׳s past can evoke emotions and memories, manifesting in ideas about nostalgia, solastalgia, salvage and abandonment, which can impinge on one׳s present therapeutic experience. We reflect on how consideration of these ideas might contribute to better future design of psychiatric inpatient facilities and the wellbeing of those using them.
“This place has given me a reason to care”: Understanding ‘managed alcohol programs’ as enabling places in Canada
Joshua Evans, Dyanne Semogas, Joshua G. Smalley, Lynne Lohfeld
For several decades, the emphasis on abstinence within homeless support systems has presented significant barriers to care for those who continue to use alcohol or drugs further marginalizing them in terms of housing and health/social services. In response, health care specialists and policymakers have recommended the integration of harm reduction philosophies and interventions into system-level responses to end homelessness. Managed alcohol programs (MAPs) have been developed to this end and have demonstrated positive results. While recent studies of MAPs have focused attention on reductions in alcohol related harms few have examined their meaning from the perspective of clients or considered the role of place. In this paper, we utilize the ‘enabling places’ frameworks to identify the place-bound properties that make a difference in the recovery journeys of clients. Drawing on in-depth interviews with clients from one program we develop a description of MAPs as enabling places that afford the elemental resources for personal recovery.
The impact of regional economic reliance on the tobacco industry on current smoking in China
Tingzhong Yang, Ross Barnett, Ian R.H. Rockett, Xiaozhao Y. Yang, Dan Wu, Weijun Zheng, Lu Li
The purpose of this study was to conduct a preliminary assessment of province of residence and other contextual factors on the likelihood of being a current smoker in China. A cross-sectional, multistage sampling process was used to recruit participants, and their smoking status and sociodemographic characteristics were obtained through face-to-face interviews. The contextual variables were retrieved from a national database. Multilevel logistic regression analysis was performed to assess the impact of provincial economic reliance on the tobacco industry, as well as individual-level characteristics, on the likelihood of being a current smoker. Participants totaled 20,601 from 27 cities located in 26 of the 31 municipalities/provinces in China. Overall smoking prevalence was 31.3% (95% CI: 19.3–33.2%), with rates being highest in Yinchuan City in Ningxia Province (49.8%) and lowest in Shanghai (21.6%). The multilevel analysis showed an excess likelihood of being a current smoker for individuals living in provinces with the highest rate of cigarette production relative to those with the smallest (p<0.001). Findings underscore the importance of restricting cigarette production and regulating the marketing of tobacco products in China.
The advent of 3D printing technologies has generated new ways of representing and conceptualising health and illness, medical practice and the body. There are many social, cultural and political implications of 3D printing, but a critical sociology of 3D printing is only beginning to emerge. In this article I seek to contribute to this nascent literature by addressing some of the ways in which 3D printing technologies are being used to convert digital data collected on human bodies and fabricate them into tangible forms that can be touched and held. I focus in particular on the use of 3D printing to manufacture non-organic replicas of individuals’ bodies, body parts or bodily functions and activities. The article is also a reflection on a specific set of digital data practices and the meaning of such data to individuals. In analysing these new forms of human bodies, I draw on sociomaterialist perspectives as well as the recent work of scholars who have sought to theorise selfhood, embodiment, place and space in digital society and the nature of people’s interactions with digital data. I argue that these objects incite intriguing ways of thinking about the ways in digital data on embodiment, health and illnesses are interpreted and used across a range of contexts. The article ends with some speculations about where these technologies may be headed and outlining future research directions.
Public access to NHS financial information: From a freedom of information regime to full open-book governance?
Sean Tunney and Jane Thomas
This article investigates the access that health professionals, researchers, journalists and, ultimately, the public have to review spending in the English National Health Service (NHS). The ability of news organisations to inform debate and decision-making, particularly when hospitals face financial constraints, relies on accessible data. Theorists such as Patrick Dunleavy have suggested that developments in information communications technology induce a dialectical movement, involving changing governance and increasing transparency. Drawing on this premise, the article reviews the extent to which the NHS has moved from a ‘freedom of information regime’ to one of ‘full open-book governance’. Its methodology includes a combination of documentary and freedom of information data analysis, as well as in-depth interviews with directors of commissioning and provider services and national agencies. It argues that, while increased dissemination of information might be consistent with the government’s digital agenda, the NHS’s quasi-market operation and its relationship to the Freedom of Information Act mean that significant data remain inaccessible or costly to obtain.
In the wake of the publication of DSM-5, the debate around the validity, usefulness and meaning of psychiatric categories has revived to an extent that is reminiscent of the battles over psychiatry’s legitimacy waged in the 1960s and 1970s. However, what is distinctive about the current crisis of legitimacy are the multiple and varied critical positions that are deployed against a psychiatry that is uncertain about its own central paradigm. In this article, I outline five critical positions that respond to the contemporary crisis in psychiatry and that point towards different directions for the future of psychiatry. Finally, I draw some conclusions about the possibilities of a paradigm shift within psychiatry and the prospects for the survival of a different discipline in the twenty-first century.
Diagnosis at work – On sick leave in Sweden
The article explores how understandings of patients with symptom diagnoses, notably fibromyalgia, are shaped by the introduction of a new medical decision-making support tool used to assess patients’ ’work capacity’, together with a revision of the Swedish social insurance. Findings from two recently concluded empirical studies are used to demonstrate how notions of ’the social’ are mobilised to undercut patients’ claims to medical legitimacy and right to sick benefits. Interviews with medical professionals, civil servants and social insurance case officers indicate that fibromyalgia patients’ clinical narratives should demonstrate ordered social circumstances if their symptoms are to be categorised as belonging to a ’medical’ sphere and thus fall within the remit of the social insurance. The main determinant in this categorisation was if patients were thought to be capable of functioning in a workplace. The workplace as constituted through the interviews was a site that removed patients from the perilous domain of ’social circumstances’ and placed them in an arena in which their symptoms, while still unsignified, could be understood as affecting ’work capacity’.
Role theory and the practice of interprofessional education: A critical appraisal and a call to sociologists
Barret Michalec and Frederic W Hafferty
The stated goals – and therefore manifest functions – of Interprofessional Education (IPE) are to bring students of various health professions together to cultivate mutual understanding and respect for each occupation’s role(s) and foster a culture of collaboration and teamwork to promote more effective and efficient care. Yet, there are telling gaps within IPE literature regarding the application of role theory to IPE pedagogy and research. In this work, we apply a sociological lens and the tenets of role theory to identify and analyze: (a) the apparent tensions nested within IPE aims with respect to issues of role specificity and role blurring; (b) the lack of attention paid to possible role adjustment strategies utilized by IPE students; (c) ambiguities within the IPE (and IPC) literature regarding the role(s) of the patient, including a failure to adequately acknowledge the status hierarchy of health-care delivery; and (d) how IPE may serve as a catalyst to reframe understandings of the physicians as ‘team leader’. In addressing these issues, we suggest discipline-specific qualities that sociologists bring to IPE research, and future directions and applications for sociologists interested in exploring elements of IPE.
The gap of masculinity in the research on HIV among men who have sex with men: A review of quantitative literature and theoretical contributions on gender and masculinity approaches
Àngel Gasch Gallén and Concepción Tomás
HIV transmission among men who have sex with men (MSM) is still expanding globally. A wide myriad of factors that determine sexual risk practices assumption have been identified. Traditional masculine gender norms have been indicated as a possible determinant of risk practices performance among MSM. To identify how quantitative and mixed research values masculinities and their role in HIV transmission practices, a literature review was conducted. Results found that quantitative and mixed research highlighted situations related to HIV transmission in three areas: factors influencing perception and motivations for risk practices engagement; environmental influences facilitating risk taking and the description of new ways to take risks. Quantitative and mixed research took into account masculinity only related to hegemonic traits, both in the risk situations explanations described in the studies and in the measurement instruments used. Although interest on masculinity as a determinant of risk practices in research is increasing, appropriate tools to measure and analyze how masculinity is playing in these arenas are limited and tend to homogenize traits related to masculinity. New approaches, regarding the diversity of masculinities, identity constructions and different sexual interaction ways, as unequal and power relations among men, are needed to better understand and frame HIV transmission among MSM.
Italian Operaismo and the Information Machine
The political economy of the information machine is discussed within the Marxist tradition of Italian operaismo by posing the hypothesis of an informational turn already at work in the age of the industrial revolution. The idea of valorizing information introduced by Alquati (1963) in a pioneering Marxist approach to cybernetics is used to examine the paradigms of mass intellectuality, immaterial labour and cognitive capitalism developed by Lazzarato, Marazzi, Negri, Vercellone and Virno since the 1990s. The concept of machinic by Deleuze and Guattari (1972, 1980) is then adopted to extend Marx’s analysis of the industrial machine to the algorithms of digital machines. If the industrial machine can be described as a bifurcation of the domains of energy and information, this essay proposes to conceive the information machine itself as a further bifurcation between information and metadata. In conclusion, the hypothesis of the society of metadata is outlined as the current evolution of that society of control pictured by Deleuze (1990) in relation to the power embodied in databases.
Making Disability Count: Demography, Futurity, and the Making of Disability Publics by Faye Ginsburg
If one considers people who now have disabilities, people who are likely to develop disabilities in the future, and people who are or who will be affected by the disabilities of those close to them, then disability affects today or will affect tomorrow the lives of most Americans. The future of disability in America is not a minority issue. (Institute of Medicine 2007, p. 16)
Disability is an ambiguous demographic, but one that is unambiguously increasing. (Fujiura 2001, p. 1)
Disabled people have more than a dream of accessible futures: we continue to define and demand our place in political discourses, political visions, and political practice, even as we challenge those very questions and demands. More accessible futures depend on it. (Kafer 2013, p. 169)
How are we as a society to successfully incorporate and support the increasing numbers of Americans with disabilities, a future that ultimately includes all of us? What kinds of cultural innovations are expanding our frameworks of inclusion to create “inhabitable worlds”? This question has been fundamental to our research project entitled Disability, Personhood and the “New Normal” in 21st Century America. As the quotations above indicate, the number of people with disabilities has been growing dramatically over the last decades. As disability scholar/activist Alison Kafer persuasively argues, the political and existential stakes for the recognition of disability are high, especially in imagining and creating what she calls “accessible futures”. Is it possible to bring the knowledge being produced both by demography and disability studies into conversation, to better understand the relationship between “counting disability” and “making disability count”?
A scant three years after the publication of The Future of Disability (2007), the 2010 Census increased its estimate of people with disabilities in the civilian non-institutionalized population to 57 million, almost 20 percent of the population (Brault 2012). Despite dramatic predictions around specific conditions such as Alzheimers or Autism Spectrum Disorder (ASD), suggesting that people with these disabilities will constitute a rapidly expanding proportion of the U.S. population for the foreseeable future, there is only occasional discussion of the policy implications of these social facts when taken together. Given the mounting demographic projections across the life course — with significant differences across race, class, ethnic, and gender categories — we argue that few will remain untouched by these emerging changes in the body politic.
Yet, as Alison Kafer points out, disability is continually rendered invisible and undesirable, “a perspective colored by histories of ableism and disability oppression” (2013 p. 3). While legislation mandates inclusion of people with disabilities in civic culture, there is still a lack of recognition for people with disabilities not only in the present but also as part of an anticipated future. Our research addresses this concern, and also attends to emerging sites of possibility, which often combine the physical, cultural and political. For example, we regard the work of the Museum Access Consortium in the New York metropolitan area as enacting a politics of possibility through attention to their material and curatorial practices. The commitment of this network to sharing and implementing expertise makes their institutions — sites of shared cultural heritage — widely accessible across a range of disabilities that require specific accommodations. Curators are increasingly engaged in designing shows that feature both the work of artists with disabilities, and exhibits highlighting the historical experience of disability in a way that also invites viewers to imagine more accessible futures, whatever background they bring to the show. Other sites of possibility we focus on in our research include visionary educational experiments; inclusive music, dance and theater projects; and disability film festivals we discuss below. All these cultural locations are “making disability count” to the publics that encounter them.[i]
Who and What Counts?: The Epistemology of Numbers
Most researchers who “count disability” — demographers, statisticians, economists — are rarely in dialogue with scholars in disability studies, whose concern has been to show how “disability counts” across a range of qualitative fields. We have interviewed a handful of demographers whose work engages this situation. In our discussions, we have learned that demonstrating the significance of the dramatic increase in numbers can be difficult. Consider the comments of one of our interlocutors who is one of the exceptions to that generalization, the economist Sophie Mitra. She has done extensive work on parameters for measuring disability cross-nationally. As she told us in an interview:
My take is that there’s still the misconception that disability is extremely rare, and there are bigger problems to deal with. To me this misconception is everywhere, [even] here in the U.S. …So there’s a complexity with the very label and perhaps there’s the imaginary, you know, what people have in their minds. It’s someone in a wheelchair and they don’t see people in wheelchairs every day and therefore perhaps it’s not that relevant an issue. (Interview, 10/8/14)
Glenn Fujiura, like Mitra, is another exception. In a trenchant article on the lack of interchange between these two discursive arenas and the consequences of that for “the epistemology of numbers”, Fujiura, a disabilities studies and rehabilitation researcher, offers insights into the dynamics of the application of statistical knowledge to issues of governance, what classically has been called “political arithmetic”:
Perhaps the better perspective on counting disability is to interpret measurement operations as imperfect proxies that capture only a fraction of the complex reality that is disablement. …In [sociologist and disability studies scholar Irving] Zola’s analysis, the “fixity” of numbers is undermined by the inherent dynamism of disability status — changing because of temporality of health status, the importance of context in manifesting a limitation, and the vagaries of conflicting classification systems. …In short, the issue is recast from one of measurement methodology to one of the epistemology of the numbers. (Fujiura & Rutkowski-Kmitta 2001, p. 40-41)
In other words, Fujiura and his co-author argue that forecasting built on projected numbers is an imperfect but necessary exercise. Certain categories of vulnerable people are “hard to count” and are therefore routinely undercounted. These categories include undocumented immigrants, those with no fixed address, and, of course, people with disabilities. Furthermore, diverse instruments are used for measuring disability, even among U.S. government agencies. For example, the U.S. Census, the Department of Labor, the Social Security Administration, the Center for Disease Control, and the American Community Survey each use distinctive parameters, according to Congressional mandates appropriate to their respective missions. These differences can make an overall counting of particular disability categories difficult to reconcile across agencies as they estimate current numbers of those with their specific categories of concern, and the consequences for their areas of governmental responsibility, including education, health care, labor force participation, and social security. [ii] As a 2012 report on “Americans with Disabilities: 2010” explained:
While there is little doubt about the large economic impact of people with disabilities, estimates of the size and characteristics of this population depend much on the definitions used to classify what it means to be disabled… The agencies and organizations that provide benefits to advocate for, or study these populations, each refer to their targeted group as people with disabilities; but because of the differences in definitions, an individual may be considered to have a disability under one set of criteria but not by another…
Rather than a dichotomous concept, disability is a gradient on which every person functions at different levels due to personal and environmental factors. (Brault 2012: 1)
In short, despite barriers to comparability, by following trends over the last decade in “counting disability”, we can identify an escalation in the overall numbers of Americans living with disabilities. Many complex factors are fueling the expansion in both numbers and visibility, which may include different strategies for identifying people with disabilities. Increased numbers may be the result of changing social attitudes, especially the decrease in stigma that once surrounded many conditions that are now labeled as disabilities.
Other historical trends have played a role. These include deinstitutionalization, improvements in medical care, and the ongoing impact of the Americans with Disabilities Act (ADA). Before the 1970s efforts to provide alternatives to the dehumanizing world of institutions, many people lived, languished and died behind locked doors, segregated from their families and communities. Additionally, medical advances have saved and often improved the quality of life of those diagnosed with life threatening conditions across the life span. These incorporate (among others) low birth weight infants who are NICU beneficiaries but who statistically are at higher risk for cognitive disabilities; military veterans returning from the longest war in American history, often with Post Traumatic Stress Disorder, Traumatic Brain Injury, amputations and a range of other issues; survivors of catastrophic accidents and chronic illness; people living into extreme old age with all the frailties that entails; and those with chronic mental health diagnoses. In short, many people are surviving and living with disabilities who might not have in the past. They are living independently, sometimes with assistants, with families or friends, or in supported environments integrated into community life, or at times in less than desirable circumstances. In tallying this broad and expanding range, we depend on the kind of quantitative work that enables us to “count disability” in ways discussed above. As researchers, we join forces with others in disability studies to examine not only the expanding numbers of people with disabilities, but also emerging cultural projects that help “make disability count” in many domains of public culture. We argue that these are creating “disability publics,” a term we use to call attention to how people with disabilities and their allies are interpellated and materialized through a range of media, across widely distributed networks of people with shared experiences of disability. These constitute an emergent form of recognition, locations for alternative engagements on the part of both producers and audiences.
Making Disability Count
In our research, “making disability count” requires attention to sites of cultural production that reflect a growing desire to communicate about the reality of living with disability in arenas of representation, while also transforming infrastructures to include audiences with disabilities. In our prior writing, we have attributed the emergence of such projects to what we call “narrative urgency” (Rapp & Ginsburg 2001), a creative response to the experiential pressures that give shape to an understanding of everyday life lived against the grain of “normalcy”. We think of these creative works as inscribing “unnatural histories” (2001) (Rapp & Ginsburg 2011) that reflect the diversity of disability that is still too rarely part of public discourse. These innovative ventures push back against a hegemonic representational economy in which children are easily launched, adults are continuously in the work force, soldiers return seamlessly to viable lives, elders decline gracefully, and unruly sexual desires are invisible outside normate categories, to mention only a few of the vast cascade of tropes in which daily life is typically rendered. The disjuncture between such dominant narratives and the quotidian experiences of those increasing numbers of people living in disability worlds fuels a growing field of counter-public cultural production.
The “disability publics” we are studying are building new social imaginaries in which people with disabilities have horizons of possibility that point toward Kafer’s utopian call for accessible futures. This provides a refiguring of notions of typicality that we think of as “a new normal”, in which the inclusion of disability is no longer considered exceptional, but is simply taken for granted, particularly given the fact that those who “count disability” estimate that this category currently encompasses close to a fifth of the population. For example, curb cuts are now accepted as necessary, a recognized “new normal” for civic space that benefits those using not only wheelchairs and walkers, but also strollers, shopping carts, and skateboards. Other routine forms of accommodation are only beginning to be routinized: closed captioning for film and television shows to accommodate deaf or hard of hearing audiences are increasingly recognized, while audio description for those with low vision or who are blind has not yet achieved that status. Less visible but equally important are the structures of computer software; the Department of Justice’s forthcoming formal regulations are expected to apply ADA accessibility requirements to the web, providing “the digital equivalent of a wheelchair ramp” (Bookman 2015, Effinger 2014). These examples demonstrate that one cannot separate the materiality of the infrastructure of everyday life from the visionary activism that has created the conditions for this reframing.
The Formation of Disability Publics
The rising numbers of people with disabilities encompass a broad and extremely heterogeneous array of circumstances that have profoundly different implications for accommodations that might be required at different points in the life cycle. Clearly, the support systems are different for a dyslexic child entering school, a post-polio adult navigating family life, or a wheelchair user negotiating the workforce. In this section, we explore one particular condition that has grown enormously in numbers and public recognition in the 21st century: Autism Spectrum Disorder (ASD). We focus on this because it raises important questions about escalating needs for accommodations and caretaking that reverberate through the experiences of so many Americans, changing the landscape of normalcy that characterizes contemporary life. In other words, ASD is a case in which counting disability and making disability count intersect in powerful ways. While it brings with it an exquisitely particular set of empirical realities, it raises particularly compelling questions that have spurred widespread discussion across many fields from medicine to the arts, in the process constituting a “disability public”.
The ever-growing category of ASD has catalyzed considerable cultural activism, creating its own distinctive disability publics, where lively debates and disagreements reveal complex responses to the widespread occurrence of autism, giving experiential shape to its demographic expansion. Media of all sorts play a large role in this process, including books, websites, blogs, YouTube videos, TED talks, documentaries, feature films, and television shows, to name a few “ASD genres”.
First-person accounts of people with autism have had a huge impact, initially emerging with the notable autobiographical works of autistic activist and professor of animal science Temple Grandin, whose 1996 book Thinking in Pictures offered a groundbreaking account of her experience of neurodiversity (Grandin 2010). Similarly, Australian writer, artist and singer-songwriter Donna Williams’ 1992 memoir Nobody Nowhere, helped change the conversation on autism and build an emerging disability public around this form of difference (Williams 1998). Both have gone on to author many more books, have had their writings adapted as television dramas, and most importantly, have inspired countless others who identify as having ASD to tell their own stories. More recently, in 2010, for example, Jesse Saperstein, an Asperger’s self-advocate, wrote Atypical: A Life in 20 and 1/3 Chapters, a memoir from childhood through his early 20s in which he chronicles his outsider status, overcoming bullying and rejection, and finding a path toward self-acceptance and the making of a young adult life (Saperstein 2010). Two years later, David Finch published his account of his late discovery of his own Asperger’s from a different point in the life cycle, well described in his title: The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband (Finch 2012). In 2014, Been There, Done that, Try This! An Aspie’s Guide to Life on Earth appeared, a collection in which “Aspie mentors” provide advice on coping with the daily stressors that they themselves have identified as being the most significant (Attwood 2014). These articulate self-advocates are doing more than illuminating their lives as part of the arc of human difference. Beyond reaching and building a disability public, they have designs on the future, throwing a lifeline to others who share their experiences and are struggling to find their place.
One of the most notable locations is found in the work of the Autistic Self Advocacy Network (ASAN). Among their many outreach projects, they have a growing catalog of publications meant to benefit their community, especially via The Autistic Press, which they describe as “a micropress serving the cross-disability community.”[iii] The most powerful of these works is Loud Hands: autistic people, speaking, “a collection of essays written by and for Autistic people… from the dawn of the Neurodiversity movement” to contemporary blog posts of today, “preserving the community’s foundational documents” (Bascom 2012).
The title Loud Hands is profoundly instructive. As the editor Julia Bascom explains in the foreword:
Abuse and silencing is a constant, pervasive theme in the lives of autistic people, and for many people it is best expressed by that old familiar phrase from special education: Quiet hands! Loud Hands means resisting. Loud Hands means speaking however we do, anyway – and doing so in a way that can be very obviously Autistic. It means finding ways to talk and think about ourselves on our own terms… The diversity of voices here is truly incredible. People of all ages, genders, backgrounds, and abilities, responded with grace, passion, and clarity, articulating brutally honest accounts of the world as it is and shining visions of what we can make it into. It starts with the basic foundational idea that there is nothing wrong with us… To say that flapping can be communication, that autistic people have voices regardless of whether or not we speak orally, and that our obviously autistic communication and thoughts have intrinsic worth is an inherently revolutionary thing…Bit by bit, piece by piece we’re rewriting the world into one where our voices are heard. (Bascom 2012: 8, 10)
Autistic voices are literally audible on The Autism Channel (TAC), launched in 2012 in West Palm Beach, Florida as a streaming cable station. With hosts on the spectrum, and the goal of covering “the whole autism world”, The Autism Channel is alone in the media world in its commitment to not only reaching people with and interested in autism, but also in putting people with ASD in front of the camera, a powerful instantiation of an expanding ASD “disability public”. Daniel Heinlein, for example, diagnosed with Asperger’s, hosts a show called “I Am Autistic” in which he interviews people in the autistic world, both on and off the spectrum (Neary 2013). Like many of the projects we are studying, The Autism Channel is clearly propelled by a sense of social justice and “narrative urgency” to construct a more radically inclusive future; as the demographers remind us, numbers are on their side. As is the case with all media, a dedicated and expanding audience is fundamental to survival and success. With an every-growing number of people and their allies identified as ASD and seeking like-minded others, The Autism Channel points towards a mediated future that we identify as a cultural activity that contributes to the eventual construction of “the new normal”.
One of our longstanding fieldsites, NY City’s Reelabilities Film Festival, is also part of this process. Now in its seventh year, this event offers an international showcase for outstanding films by, for and about people with disabilities. Cinema occupies one of the more influential roles in contemporary American culture; to virtually encounter the lives of those with specific impairments as they engage the world is a particularly compelling way to build disability publics. We have been following the Festival’s remarkable growth since its inaugural year. Screenings are followed by discussions with filmmakers as well as representatives of the disability worlds portrayed in the film itself. Intensive planning and preparation for festival success requires off-screen recognition of the needs of diverse audiences. The requisite accommodations of the viewing space include audio description for those with visual impairments, closed captioning and signing for deaf audience members, seating that allowed for as many power chairs as necessary in the theater, with room for a few guide dogs, a large percentage of people on the autism spectrum using assistive communication devices, and a high tolerance for audience unruliness. As regular attendees, we found that experiencing this infrastructural welcome made us acutely aware of the unaccommodating and ableist arrangements of typical commercial cinema spaces.
One of the featured screenings for the 2014 festival was exemplary of the sense of inclusion the festival embodies and creates. The New York premiere of Invitation to Dance, the bio-doc about the life of disability activist Simi Linton that she made with Christian Von Tippelskirch, was sitting and standing room only. The film tells the story of Linton’s post-accident transformation into a wheelchair-riding activist and her life as part of the avant-garde of disabled artists and radical thinkers, all unstoppable in their quest for “equality, justice, and a place on the dance floor”.[iv] As we joined the crowd walking, rolling, and limping into the theater for the film’s debut, the sense of celebration was electric. The responsiveness of this disability public to the film was palpable, creating a kind of jouissance produced by the audience’s recursive recognition of disability accomplishments reflected in the story line. Everyone in the packed house stayed on for lively post-screening conversation, followed by a reception and dance party with wheelchair dancers featured in the film taking the lead.
We focus on Reelabilities as a representative field site, demonstrating the productive intersection of demography and the creation of disability publics. The dramatic expansion of interest in the festival is indicative of both growing numbers of people with disabilities and their allies as participants, and the increasing cultural consciousness they represent that together make disability count. Since its inception in 2008, the festival – which began in a single location in Manhattan – has now proliferated, with 37 venues in the NY metropolitan area and festival partnership in 15 American cities.[v]
In all these locations, the presence of diverse audiences, from the unmarked category of the temporarily able-bodied, to people with a remarkable range of differences, enable a kind of existential repositioning, laying the groundwork that is essential to “the new normal”. This, we argue is essential to the making of disability publics and accessible futures. As Alison Kafer reminds us,
…disabled people are continually being written out of the future, rendered as the sign of the future no one wants….It is my loss, our loss, not to take care of, embrace, and desire all of us. We must begin to anticipate presents and to imagine futures that include all of us. (Kafer 2014, p. 46)
Resignifying a hegemonic frame takes time, even when those who count disability demonstrate that numbers increasingly are on “our side”. Yet expanding numbers are not enough. Kafer’s powerful and inclusive vision of futurity in which disabled subjects are fully recognized and participatory as part of projects of social justice is essential to making disability count. As anthropologists, our job is to show how these processes, whether by counting disability or making it count, are creating more inhabitable worlds.
Thanks to Emily Cohen and Michele Friedner for inviting us to write for “Inhabitable Worlds” and for their thoughtful editorial guidance. We are grateful to the many people who have opened up their disability worlds to us as we pursue this research. We also thank our generous funders. Initial support for our work was provided by the Spencer Foundation and NYU’s Center for Human Development and Social Change. Current support comes from an NEH Collaborative Grant, NYU’s Humanities Initiative, and the Guggenheim Foundation.
[i] Our research includes a much broader universe: intensive longitudinal interviews with families affected by disability, long-term research in biomedical research labs studying “atypical brains”, and emerging transition programs for young adults with disabilities who are leaving the public education system. Of course, in focusing on sites of innovation, we do not lose track of the overwhelming lack of everyday support and ongoing discrimination faced by so many who identify with the disability label.
[ii] We are grateful to Martin Vega for his insights into the complexities of census data.
[iii] For further information, please see http://autisticadvocacy.org/home/resource-library/#books, Accessed May 9, 2015.
Attwood, T., 2014. Been There. Done That. Try This!: An Aspie’s Guide to Life on Earth 1 edition. C. R. Evans & A. Lesko, eds., London ; Philadelphia: Jessica Kingsley.
Bascom, J., 2012. Loud Hands: Autistic People, Speaking, Washington, DC: Autistic Self Advocacy Network.
Bookman, T., 2015. U.S. Aims To Speed Up The Internet For The Disabled. NPR.org. Available at: http://www.npr.org/2015/03/07/391435879/u-s-aims-to-speed-up-the-internet-for-the-disabled, Accessed March 18, 2015.
Brault, M., 2012. Americans with Disabilities: 2010. Available at: http://www.census.gov/prod/2012pubs/p70-131.pdf, Accessed March 18, 2015.
Effinger, C., 2014. The Americans with Disabilities Act (ADA) & Web Accessibility. The National Law Review. Available at: http://www.natlawreview.com/article/americans-disabilities-act-ada-web-accessibility, Accessed March 18, 2015.
Finch, D., 2012. The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband Reprint edition., New York: Scribner.
Fujiura, G.T., 2001. Emerging trends in disability. Population Today, 29(6), pp.9–10.
Fujiura, G.T. & Rutkowski-Kmitta, V., 2001. Counting Disability. In Handbook of disability studies. Sage Publications, pp. 69–96.
Faye Ginsburg and Rayna Rapp (aka Fanya Rappburg when writing together), are both faculty members in the Department of Anthropology at New York University. Since 2007, they have been carrying out research on cognitive disability and cultural innovation, with an ethnographic focus on New York City. Based on that work, they are currently writing a book together entitled Disability, Personhood, and the “New Normal” in the 21st Century with the support of an NEH Collaborative Grant. They are both active in the NYU Council for the Study of Disability which they founded in 2006. At NYU, Faye Ginsburg is Director of the Center for Media, Culture and History and Rayna Rapp is Associate Chair and core faculty for the departmental program in Science Studies/Medical Anthropology.
Policing at the Synapse: Ferguson, Race, and the Disability Politics of the Teen Brain by Julie Passanante Elman
In February 2014, University of Missouri (“Mizzou”) students made national news when they formed a human wall to protest the Westboro Baptist Church’s presence on their campus. Westboro arrived to denounce Michael Sam, a gay “Mizzou Tiger” who would become the first openly gay NFL player. Mizzou students eagerly donned “Stand with Sam” rainbow buttons and “WE ARE ALL COMOSEXUAL” t-shirts (an homage to “COMO,” or how locals refer to Columbia, MO). The nation turned its collective eye to “The Middle,” a North American region that has been associated (at times, stereotypically, by those on the coasts) with religious conservatism, provincialism, and intolerant attitudes toward cultural difference or sexual non-normativity. Rather than asking “what’s the matter with Kansas?” in frustration, onlookers celebrated Missouri’s anti-homophobic moment of conviction, its investment in creating an “inhabitable world” for queers living outside metronormativity’s coastal enclaves.[i]
While one “Missouri Mike” made his NFL bid, another would never arrive on his campus or attend his first college class. On August 9, 2014 in Ferguson, MO, Michael Brown, an unarmed African-American teenager, was fatally shot by Darren Wilson, a white police officer. His body lay in the street for four hours, as his blood pooled on the asphalt, warmed by the same unyielding Missouri sun that shone on MU’s Francis Quadrangle as students returned in late August. Mizzou students returned to a very different campus. Many of my students were returning from their childhood homes in St. Louis and its neighboring suburbs. Many were from Ferguson. Others were the sons and daughters of St. Louis-area police officers.
In late November, Governor Jay Nixon declared a state of emergency in Ferguson nearly a week before the grand jury decided not to indict Wilson. Politically committed MU students quickly mobilized to support the Ferguson protests. Using the social media handle “MU4Mike,” students organized die-ins in the student center and City Hall and were supported by a variety of faculty, including a Vice Chancellor.
Mizzou’s Facebook page posted photos of the event (including the one above), which incited a variety of hateful responses:
- “White lives matter too!”
- “…[B]lack lives appear to matter to everyone but black people…the black community is the one offing themselves in record numbers, not white cops defending themselves from charging aggressors.”
- “Raise your kids not your hands.”
- “I have been a staunch Mizzou fan for years and…I think it is offensive to support a criminal in protest on state property on a states [sic] sponsored site…Don’t tell me you are all naïve enough not to know what he wanted the cigars for.”
- “How stupid. All lives matter. Stop wallowing in self pity [sic]. This was and is not a race issue. Get real.”
- “Jus [sic] saying if their [sic] was a big group of whites that said that we’d get attacked for bein rascist [sic]! Fuckin stupid.”
Meanwhile, campus police monitored the MU Gaines/Oldham Black Culture Center after an anonymous threat to the center (“Let’s burn down the black culture center & give them a taste of their own medicine.”) appeared on YikYak, a mobile, anonymous social media application.
Perhaps no image better encapsulates the abruptness with which Mizzou’s political landscape shifted than this screenshot of Mizzou’s Facebook page:
Enveloped in hopeful sunlight, an African-American student stands with his hands raised in peaceful protest. He stands in stark contradistinction to racist comments (“Your [sic] a thug bro!!”) as well as a meme of a white father and son pointing, as if to the man in photo, to proclaim, “Look son, a faggot!” Less than ten months after the campus had “Stood with Sam,” entangled racism and homophobia seemed more virulent than ever.
As an MU faculty member, I wanted to contribute my perspective to this special series—first off—to spotlight our students’ courageous (and ongoing) activism to make Mizzou a more inhabitable world for all of its students. As a critical queer/disability studies scholar contemplating Ferguson, I am thinking of the challenging questions posed by queer/disability activist Eli Clare, who invites us to map the sedimentary layers of injustice:
…How do we make the space to talk honestly and wrenchingly about all the multi-layered systems of injustice that target some of us and privilege others for who we are? The layers are so tangled: gender folds onto disability, disability wraps around class, class strains against race, race snarls into sexuality, sexuality hangs onto gender, all of it finally piling onto our bodies…How do we dig down to find, not uncrackable, unmovable rhetoric, but the concrete daily material, emotional, and spiritual realities of privilege and oppression on this planet rife with injustice? (Eli Clare, 2003)
Feminist, critical race and disability scholars have traced some of these layers. They excavate the shared racial and disability roots/routes of eugenics as well as their persistent afterlife in racial profiling, state violence, and entwined histories of incarceration and (de)institutionalization (see especially Disability Incarcerated: Imprisonment and Disability in the United States and Canada).[ii] Likewise, the hashtag #disabilitysolidarity emerged to augment #blacklivesmatter with a digital archive of various incidences of state violence affecting people with psychiatric, cognitive, and physical disabilities. One such incident was the death of Kajieme Powell.
Less than four miles from Ferguson, and a mere 10 days after Darren Wilson shot and killed Michael Brown, officers with the Metropolitan Police Department of St. Louis shot and killed 25-year old Kajieme Powell, an African-American man with a psychiatric disability.
His final moments of life were captured on a bystander’s disturbing cell phone video. Powell had shoplifted from a convenience store, and local business owners called 911 to report a man who was behaving erratically and wielding a steak knife. Abandoning his stolen canned energy drinks and pastries, the video shows an agitated Powell pacing and talking to himself before the police arrive. The police exit their SUV with guns drawn, and with his hands held out next to his hips, Powell advances, yelling, “Shoot me! Shoot me now!” The police fire 12 shots in less than 20 seconds, continuing to fire as his motionless body hit the ground. The officers flip Powell’s corpse to place his dead wrists in handcuffs. Although Missouri State Senator Jamilah Nasheed called for a federal investigation into the case, Powell’s death has not received the sustained media or activist exposure that Brown’s has.[iii]
As a black man with a psychiatric disability in an economically depressed neighborhood in one of the nation’s most segregated cities, Powell’s police encounter and his death are deeply structured by intersections of race, class, disability, and region. He was the fourth person with a psychiatric disability in the U.S. to be killed by the police in a two-week period, and although I am discussing Powell, I could also discuss Tanisha Anderson, Eleanor Bumpurs, Ezell Ford, Jason Harrison, Anthony Hill, Darren Rainey, Tony Terrell Robinson, or countless others.
In 2014, the U.S. Department of Justice revealed that people with disabilities became victims of violent crimes at nearly three times the rate of their nondisabled American peers.[iv] At this very moment, the Supreme Court is deliberating, in San Francisco v. Sheehan, whether or not the Americans with Disabilities Act (ADA) requires law enforcement to take special precautions to protect people with psychiatric disabilities from excessive force during arrests. Increased police violence often occurs when law enforcement officials misrecognize a person’s disability during an encounter.[v] For instance, officers beat and arrested Ernest Griglen after mistaking his insulin shock for intoxication. Police treat deaf people as non-compliant when they fail to heed a verbal command, which leads to unnecessary use of tasers or pepper spray, or worse, severe beatings. When police read Jonathan Meister’s attempt to communicate with American Sign Language as “threatening,” they beat and tasered him, and he was charged with assaulting an officer. Finally, the highly publicized death of Eric Garner, whose death, like Powell’s, was captured on video, occurred at the intersection of race and disability. Historian David M. Perry argues, “Because Garner was obese, diabetic, asthmatic, suffered from sleep apnea and had a heart condition, goes the argument, he was somehow to blame for his death.”[vi] Chilling jokes about Garner—that “his family should sue Papa John’s, Dominos, Pizza Hut, Burger King, and McDonald’s” rather than NYPD officers who heard him say “I can’t breathe” 11 times before he was choked to death—reveal how ableism and fat-phobia bolster colorblind racism.
Although the entanglement of race and disability may seem more explicit in Powell’s case, it is important to analyze how shared contours of racism and ableism also shaped Brown’s encounter with law enforcement as well as his subsequent media representation as a “troubled” teenager (i.e. John Eligon callously described Brown as “no angel” in his New York Times obituary while Wilson described him as a “demon” in his testimony), even though Brown has never been identified as disabled. In thinking through events in Ferguson, it is important to account for the cultural impacts of a broader history of the racial and disability politics of adolescence, specifically cultural ideas about the volatile “teen brain,” which I discuss in greater depth in the final chapter of my recently published book, Chronic Youth: Disability, Sexuality, and U.S. Media Cultures of Rehabilitation. A city that boasts more arrest warrants than people, Ferguson may be an epicenter of a national conversation about race and exploitative state power, but how do we map an ecosystem of oppression and privilege that is at once local and planetary?
The Racial and Disability Politics of the Teen Brain
Michael Brown’s death refracts a longer cultural history of American adolescence and the metaphors of disability that have been used to describe it. By the 1990s, disability was becoming increasingly visible as a cultural identity and politicized as an issue of citizenship within activism for the 1990 passage of the Americans with Disabilities Act, which was preceded by disability activism in the 1970s and bolstered by other post-1968 movements like Civil Rights, women’s and sexual liberation, and anti-war movements. Rather than being characterized solely as a medical pathology, “disability” increasingly signified a culturally valued minority identity that was part of the multicultural tapestry of American society, and as such, it acquired new discursive mobility. One site of disability’s discursive mobility, I argue in Chronic Youth, could be found in the proliferation of disability metaphors used to describe and address teenagers from the 1970s onward. On television screens and within the pages of young adult literature, cultural producers likened the process of overcoming disabilities or illnesses, such as stutters, arthritis, or cancer, to the process of “growing up.” As cultural producers depicted the intangible instability of adolescence using the “material metaphor” of disability, the language used by parenting experts and policymakers to describe adolescence shifted from the criminalizing rhetoric of juvenile delinquency to the medicalizing rhetoric of disability (i.e. adolescence as “temporary insanity” or “brain damage.”).[vii]
Beginning in the 1990s, the “Decade of the Brain,” truth claims about the brain permeated popular culture in a variety of ways. A variety of parenting books emerged in the early 21st century and popularized “neuroparenting,” my term for a neuroscience-inflected parenting philosophy that blames the brain (specifically, an “underdeveloped” pre-frontal cortex) for negative traits that have been culturally associated with adolescence (i.e. poor judgment, hair-trigger anger, or moodiness). Neuroparenting entered popular media in a variety of ways. Take this popular advertisement for Allstate Insurance, for example:
This ad invokes popular contemporary neuroscientific knowledge about the “incomplete” teen brain to explain poor driving: “[e]ven bright, mature teenagers sometimes do things that are ‘stupid.’ But it’s not really their fault. It’s because their brain hasn’t finished developing.” Meanwhile, parenting literature increasingly drew on new neuroscientific discoveries to reimagine adolescence as a temporary disability rather than a willful rebellion or worse, a form of criminalized juvenile delinquency. Although the use of disability rhetoric may seem to pave the road for more compassionate parenting, neuroparenting generally only essentializes culturally undesirable characteristics as brain-based. Moreover, this universalizing (and seemingly race-neutral) perception of teens as “neurologically-impaired” or of adolescence as “self-induced learning disability” (see the image below) drew upon post-ADA aspirations for understanding and inclusion of difference but retained ableist ideas of disability as an undesirable obstacle to be overcome or eliminated.
Cultural ideas about the teen brain also took shape in relation to highly publicized school shootings of the 1990s, most notably the Columbine massacre, and it became painfully clear that neuroparenting was far from race-neutral. Racial and class politics of school shootings formed an unacknowledged center strand of their media coverage. As cultural theorist Todd Ramlow argues, journalistic coverage of white school shooters actively ignored the suffering of “[u]nderclass and inner-city teens [who] ha[d] faced quotidian school violence for decades…” when they accentuated the “surprising” horrors of white suburban school violence.[viii] Neuroscientific truth claims about the underdeveloped teen brain quickly entered the conversation about teen school shooters. Newspapers repeatedly noted that Columbine shooter Eric Harris was being treated with Luvox, an antidepressant, and Columbine ignited cultural debates about pharmaceutical treatments for youths diagnosed with psychiatric disabilities. Following the Charles “Andy” Williams school shooting in 2001, Daniel R. Weinberger, director of the Clinical Brain Disorders Laboratory at the National Institute of Health (NIH), wrote a New York Times op-ed piece to state that, although knowledge about the brain should not “absolve” criminals, “[t]o understand what goes wrong in teenagers who fire guns, you have to understand something about the biology of the teenage brain.”
While neuroscientific discoveries circulated in neuroparenting and in relation to the culpability of (and even, at times, sympathy for) white school shooters, the image of the teen brain functioned very differently in relation to African-American or Latino teenagers. In 1992, Dr. Frederick K. Goodwin, Director of the National Institutes of Mental Health (NIMH), began publicizing the “Violence Initiative” as the federal government’s “top priority” for psychiatric research.[ix] Presented as a public health project, the Violence Initiative sought to screen “inner city” children as young as five to identify those who “might be more likely to go on to becoming labeled eventually as delinquent or criminal” and to design psychiatric interventions that would prevent their becoming violent or criminal. Goodwin compared these “inner-city youths” with “violent, oversexed monkeys who live in the wild” while presenting his research.[x] In 1994, Richard Herrnstein and Charles Murray argued, in their infamous book The Bell Curve, that genetics, moreso than structural inequalities, largely determined racial disparities in IQ, and the authors racialized the relationship of IQ to crime, unemployment, premarital pregnancy and poverty. One year later, legal scholars at the University of Maryland organized a meeting to discuss the relationship of genetics and criminal behavior, which was vociferously protested by African-American activists and some psychiatrists, because research on the genetics of criminal behavior would likely disproportionately target people of color.
Three years later, Princeton University sociologist John Dilulio, Jr. made headlines with his controversial “superpredator” treatise.[xi] Fueled by the infamous “Central Park Jogger” case of 1989, this neologism described a new generation of “radically-impulsive, brutally remorseless youngsters, including ever more preteenage boys, who murder, assault, rape, rob, burglarize, deal deadly drugs, join gun-toting gangs and create serious communal disorders.” [xii] Dilulio commented, on two separate occasions, that superpredators were overwhelmingly black, and neglecting well-documented histories of racial profiling and the prison-industrial complex, Dilulio argued that if “blacks” were “overrepresented in the ranks of the imprisoned,” it was because they were “overrepresented in…the violent criminal ranks…”.[xiii] No white school shooter to date has ever been called a superpredator, and journalists never medicalized the superpredator’s “incomplete brain” in the same way that they had Andy Williams’s. Rather, building from The Bell Curve, proponents of the superpredator myth correlated low IQ with a propensity toward violent behavior. Despite research about impulsivity and the underdeveloped teen brain, nearly every state passed draconian legislation between 1992 and 1999 that trended toward sentencing juveniles as adults. By the twentieth century’s close, the increasing medicalization of white adolescence paralleled (and, in some ways, facilitated) the increasing criminalization of black and Latino/a youth in an age of “school-to-prison pipelines,” in which nonwhite students are disproportionately diagnosed with ADHD, placed in special education programs, suspended, and criminalized.
Neuroparenting attempts to humanize teenagers by explaining their emotionality or waywardness through “politically-neutral” neuroscientific truths and metaphors of disability. Yet this not only essentializes adolescence as negative but also reinforces associations of psychiatric disability (“brain damage” or “temporary insanity”) with impulsivity and threat, which endanger youth and disabled people in encounters with police. Robin Bernstein persuasively argues that the exclusion of black youth from childhood innocence has been central to its formation since the nineteenth century.[xiv] “Diagnostic regimes,” such as IQ tests, were devised in the early 20th century as a eugenic tactic to identify and segregate “unfit” (read: nonwhite, disabled, or poor) students, and neuroparenting forms another chapter in this story, as white innocence continues to be bolstered by ableist biological essentialism (i.e. the incapacity of “disabling” adolescence) as well as racist accounts of the congenital criminal predisposition of nonwhite youth.[xv]
Overlapping layers of ableism, ageism and racism deeply shaped Darren Wilson’s description of Brown as a “demon” with superhuman strength, but I have yet to find an account of Brown’s death that notes (borrowing from Weinberger) that we “need to understand something about the biology of the teen brain” in order to understand Brown’s encounter with Wilson.
MU students and faculty continue to grapple with the legacies of Ferguson in our classrooms, and an account of the intersectionality of oppression is vital. However, in offering this crip genealogy of adolescence, I am decidedly not invoking the world-erasing, colorblind racism of “#alllivesmatter” (Here, I am reminded of Arthur Chu’s sardonic tweet: “Do people who change #blacklivesmatter to #alllivesmatter run through a cancer fundraiser going “THERE ARE OTHER DISEASES TOO?”). Racialized and ableist visions of criminality overlap and reinforce one another. Ageism adds another layer. Homophobic epithets wrap around gender and race. Biological evidence, when made to seem irrefutable rather than culturally constructed, forms the connective tissue of ecosystems of injustice—“all of it finally piling onto our bodies.” How might #disabilitysolidarity with #blacklivesmatter begin to offer what Audre Lorde once named “a litany for survival:” the work “seeking a now that can breed futures” in a society in which some “were never meant to survive?”[xvi]
[i] The term “metronormativity” names the privileging, in queer studies, of urban histories and narratives of queerness that occludes rural spaces and disavows the classist attitudes that attend the idealizing of cosmopolitanism. See Scott Herring, Another Country: Queer Anti-Urbanism (New York: New York UP, 2010); Mary L. Gray, Out in the Country: Youth, Media, and Queer Visibility in Rural America (New York: New York UP, 2009); Judith Halberstam, In a Queer Time and Place: Transgender Bodies, Subcultural Lives (Durham: Duke UP, 2005). See also “Queering the Middle: Race, Region, and a Queer Midwest,” GLQ: A Journal of Lesbian and Gay Studies 20.1-2, eds. Martin Manalansan, Chantal Nadeau, Richard T. Rodriguez, and Siobhan B. Somerville (Durham: Duke UP, 2014).
[ii] Many scholars have been working at the intersection of race and disability, including but not limited to Ben-Moshe, Disability Incarcerated; Ellen Samuels, Fantasies of Identification: Disability, Gender, Race (New York: New York UP, 2014); Alondra Nelson, Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination (Minneapolis: University of Minnesota Press, 2013); Chris Bell, Blackness and Disability: Critical Examinations and Cultural Interventions (Ann Arbor: Michigan State University Press, 2012); Nirmala Erevelles, “Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality,” Journal of Literary and Cultural Disability Studies 4.2 (2010): 127-145; and David T. Mitchell & Sharon L. Snyder, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006).
[iii] David M. Perry, “How police can avoid shooting the mentally ill,” CNN.com, August 26, 2014, http://www.cnn.com/2014/08/26/opinion/perry-police-shooting/, Accessed 17 March 2015.
[iv] David M. Perry and Lawrence Carter-Long, “How Misunderstanding Disability Leads to Police Violence,” The Atlantic, May 6, 2014, http://www.theatlantic.com/health/archive/2014/05/misunderstanding-disability-leads-to-police-violence/361786/, Accessed 17 March 2015.
[v] Scott Kaufman, “California police use taser on deaf man trying to communicate with them via sign language,” Rawstory, February 16, 2014, http://www.rawstory.com/rs/2014/02/california-police-use-taser-on-deaf-man-trying-to-communicate-with-them-via-sign-language/.
[vi] David M. Perry, “When disability and race intersect,” CNN.com, December 4, 2014, http://www.cnn.com/2014/12/04/opinion/perry-garner-disability-race-intersection/, Accessed 19 March 2015.
[vii] The phrase “materiality of metaphor” is David T. Mitchell’s and Sharon Snyder’s. See Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2001).
[viii] Todd Ramlow, “Bad Boys: Abstractions of Difference and the Politics of Youth ‘Deviance,’” GLQ: A Journal of Lesbian and Gay Studies 9.1-2 (2003): 117. See also Elman, Chronic Youth.
[ix] Natalie Angier, “Disputed Meeting To Ask if Crime Has Genetic Roots,” The New York Times, September 19, 1995, C1.
[x] Douglas P. Shuit, “Angry Blacks Say Conference Links Genetics, Crime,” Los Angeles Times, October 14, 1993, http://articles.latimes.com/1993-10-14/local/me-45748_1_genetic-links, Accessed 21 March 2015.
[xi] These findings were later published in book form. See William J. Bennett, John J. Dilulio, Jr., and John P. Walters, Body Count: Moral Poverty…And How to Win America’s War Against Crime (New York: Simon & Schuster, 1996).
[xiii] Dilulio in Elaine Brown, Condemnation of Little B (New York: Beacon Press, 2004), 109.
[xiv] Robin Bernstein, Racial Innocence: Performing American Childhood from Slavery to Civil Rights (New York: New York University Press, 2011).
[xv] “Diagnostic regime” is David T. Mitchell and Sharon L. Snyder’s term. See Mitchell and Snyder, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006).
[xvi] Audre Lorde, “A litany for survival.”
Julie Passanante Elman is Assistant Professor of Women’s and Gender Studies at the University of Missouri. She is author of Chronic Youth: Disability, Sexuality, and U.S. Media Cultures of Rehabilitation (New York: New York University Press, 2014). Her research interests include disability studies, queer theory, media studies and feminist science studies. Her articles have appeared in Television and New Media, Journal of Bioethical Inquiry, and Journal of Literary and Cultural Disability Studies.