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.
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).
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.
Felt stigma and obesity: Introducing the generalized other
Eva Barlösius and Axel Philipps
People with a big body are tainted in western societies. Although most research on obesity occurs in the medical context, few studies investigate characteristics and effects of feelings and fears related to the fat stigma in the absence of overt discrimination. By linking Norbert Elias’s and George H. Mead’s theoretical frameworks, this paper offers a different approach to understanding and investigating felt stigma. The study is based on secondary data (25 semistructured interviews with children and adolescents). It explores internalized societal perspectives on overweight and obesity and inquires into the way in which interviewees handle the blame frame of personal responsibility during their interview. The preliminary findings suggest that specific forms of managing one’s self-presentation in interviews indicate felt stigma. Consequently, the paper argues for an analytical approach that extends the focus on the content of interviews to include its dynamics.
How family members manage risk around functional decline: The autonomy management process in households facing dementia
Brandon Berry, Ester Carolina Apesoa-Varano, and Yarin Gomez
Most dementia research investigates the social context of declining ability through studies of decision-making around medical treatment and end-of-life care. This study seeks to fill an important gap in research about how family members manage the risks of functional decline at home. Drawing on three waves of in-depth interviewing in 2012–2014, it investigates how family members in US households manage decline in an affected individual’s natural range of daily activities over time. The findings show that early on in the study period affected individuals were perceived to have awareness of their decline and routinely drew on family members for support. Support transformed when family members detected that the individual’s deficit awareness had diminished, creating a corresponding increase in risk of self-harm around everyday activities. With a loss of confidence in the individual’s ability to regulate his or her own activities to avoid these risks, family members employed unilateral practices to manage the individual’s autonomy around his or her activity involvements. These practices typically involved various deceits and ruses to discourage elders from engaging in activities perceived as potentially dangerous. The study concludes by discussing the implications that the social context of interpretive work around awareness and risk plays an important role in how families perceive an elder’s functional ability and manage his or her activity involvements.
Flexible positions, managed hopes: The promissory bioeconomy of a whole genome sequencing cancer study
Rachel Haase, Marsha Michie, and Debra Skinner
Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by both public and private sectors as having the potential to revolutionize clinical medicine. This promissory bioeconomy of genomic research and technology is generated by, and in turn generates, the hopes and expectations shared by investors, researchers and clinicians, patients, and the general public alike. Examinations of such bioeconomies have often focused on the public discourse, media representations, and capital investments that fuel these “regimes of hope,” but also crucial are the more intimate contexts of small-scale medical research, and the private hopes, dreams, and disappointments of those involved. Here we examine one local site of production in a university-based clinical research project that sought to identify novel cancer predisposition genes through whole genome sequencing in individuals at high risk for cancer. In-depth interviews with 24 adults who donated samples to the study revealed an ability to shift flexibly between positioning themselves as research participants on the one hand, and as patients or as family members of patients, on the other. Similarly, interviews with members of the research team highlighted the dual nature of their positions as researchers and as clinicians. For both parties, this dual positioning shaped their investment in the project and valuing of its possible outcomes. In their narratives, all parties shifted between these different relational positions as they managed hopes and expectations for the research project. We suggest that this flexibility facilitated study implementation and participation in the face of potential and probable disappointment on one or more fronts, and acted as a key element in the resilience of this local promissory bioeconomy. We conclude that these multiple dimensions of relationality and positionality are inherent and essential in the creation of any complex economy, “bio” or otherwise.
The paper investigates whether, how and in what circumstances boundary blurring or boundary maintenance is productive or destructive of sense in collaborative research based on a case study involving researchers from two universities and two principal organisational stakeholders in a local healthcare system in England between 2009 and 2012. Adopting a narrative method, using meeting observation, document analysis and interviews, we describe two key sets of activities in the evolution of collaboration, which allows us to tackle the question at two levels. Studying the production of documents and their use as boundary objects in project management meetings, we show how these were used to enable cooperation by establishing a truce between worldviews, giving participants a better feel for the game and a clearer perception of its stakes. Studying how the partnership expanded to take in other organisations besides the two formal partners, we show how the project accommodated pre-existing organisational interests but thereby sacrificed its experimental ethos. In showing how actors needed to subvert their experimental script to enact collaborative partnership, we argue for understanding and evaluating the latter as the co-produced outcome of disputes and co-orientations towards a practical ideal, not as an organisational format for knowledge co-production.
Civil Society Organizations and medicines policy change: A case study of registration, procurement, distribution and use of misoprostol in Uganda
Esther Cathyln Atukunda, Petra Brhlikova, Amon Ganafa Agaba, and Allyson M. Pollock
Misoprostol use for postpartum haemorrhage (PPH) has been promoted by Civil Society Organizations (CSOs) since the early 2000s. Yet, CSOs’ role in improving access to misoprostol and shaping health policy at global and national levels is not well understood. We document the introduction of misoprostol in Uganda in 2008 from its registration, addition to treatment guidelines and national Essential Medicines List (EML), to its distribution and use. We then analyse the contribution of CSOs to this health policy change and service provision. Policy documents, procurement data and 82 key informant interviews with government officials, healthcare providers, and CSOs in four Ugandan districts of Kampala, Mbarara, Apac, Bundibugyo were collected between 2010 and 2013.
Five key CSOs promoted and accelerated the rollout of misoprostol in Uganda. They supported the registration of misoprostol with the National Drug Authority, the development of clinical guidelines, and the piloting and training of health care providers. CSOs and National Medical Stores were procuring and distributing misoprostol country-wide to health centres two years before it was added to the clinical guidelines and EML of Uganda and in the absence of good evidence. The evidence suggests an increasing trend of misoprostol procurement and availability over the medicine of choice, oxytocin. This shift in national priorities has serious ramifications for maternal health care that need urgent evaluation. The absence of clinical guidelines in health centres and the lack of training preclude rational use of misoprostol. CSOs shifted their focus from the public to the private sector, where some of them continue to promote its use for off-label indications including induction of labour and abortion. There is an urgent need to build capacity to improve the robustness of the national and local institutions in assessing the safety and effectiveness of all medicines and their indications in Uganda.
In addition, there was a special issue section in the second April issue, entitled “Pharmaceuticalization: Problems and Prospects.” It was edited by Jonathan Gabe, Simon Williams, Paul Martin and Catherine Coveney, who write in the opening of their introduction:
This special issue stems from a symposium organised by the authors at the University of Warwick, UK, in December 2011. The event brought together a range of researchers in medical sociology, Science and Technology Studies (STS) and cognate fields in order to take stock and critically examine, from a variety of different perspectives, the role of pharmaceuticals in society. More specifically, the aim was to consider the empirical and theoretical questions arising from recent trends in the development, regulation, marketing and use of pharmaceutical products.
We trace the history of the phallometric test – which measures erections of men exposed to visual erotic stimuli to characterize sexualities – in order to account for its functioning as a ‘truthing technology’. On the basis of a content analysis of 410 key scientific journal article abstracts, we argue that since its invention in Czechoslovakia in the 1950s, phallometry has been employed within three distinct assemblages: as a test of predominance of sexual desire, as a test for therapeutic efficacy, and as a threshold test of sexual risk. Drawing on works of theorists of materialization and proponents of script theory, we argue that within each assemblage phallometric testing materializes male desire and renders it measurable via a ‘technosexual script’. We consider the performative effects of phallometry in establishing scientific conceptions of normal and abnormal sexualities. At the same time, through attention to debates among practitioners and broader controversies surrounding the employment of phallometry, we examine the limits of researchers’ abilities to establish the broader credibility of the test and capture the phenomenon of sexual desire. This analysis contributes to the study of truthing technologies (or ‘truth machines’) as a class, while also helping to build bridges between science and technology studies and sexuality studies.
Organizing for ontological change: The kernel of an AIDS research infrastructure (open access)
David Ribes and Jessica Beth Polk
Is it possible to prepare and plan for emergent and changing objects of research? Members of the Multicenter AIDS Cohort Study have been investigating AIDS for over 30 years, and in that time, the disease has been repeatedly transformed. Over the years and across many changes, members have continued to study HIV disease while in the process regenerating an adaptable research organization. The key to sustaining this technoscientific flexibility has been what we call the kernel of a research infrastructure: ongoing efforts to maintain the availability of resources and services that may be brought to bear in the investigation of new objects. In the case of the Multicenter AIDS Cohort Study, these resources are as follows: specimens and data, calibrated instruments, heterogeneous experts, and participating cohorts of gay and bisexual men. We track three ontological transformations, examining how members prepared for and responded to changes: the discovery of a novel retroviral agent (HIV), the ability to test for that agent, and the transition of the disease from fatal to chronic through pharmaceutical intervention. Respectively, we call the work, ‘technologies’, and techniques of adapting to these changes, ‘repurposing’, ‘elaborating’, and ‘extending the kernel’.
‘I’ve used the word cancer but it’s actually good news’: discursive performativity of cancer and the identity of urological cancer services
Karolina Agata Kazimierczak and Zoe Skea
Drawing on the ethnographic study of urological cancer services, this article explores how a set of particular discourses embedded in the everyday clinical work in a large teaching hospital in the UK helps materialise particular configurations of cancer and related professional identities. Emerging on the intersection of specific socio-material arrangements (cancer survival rates, treatment regimens, cancer staging classifications, metaphors, clinical specialities) and operating across a number of differential relations (curable/incurable, treatable/untreatable, aggressive/nonaggressive), these configurations help constitute the categories of ‘good’ and ‘bad’ cancers as separate and contrasting entities. These categories help materialise particular distributions of power and are thus implicated in the making of specific claims about the identity of urological cancer services as unique and privileged. Exploring these issues in view of feminist and material-semiotic approaches to studying science, technology and medicine, this article seeks to move away from the understanding of cancer discourses as primarily linguistic performances, proposing to see them instead as arrangements of practices and relations simultaneously material and semiotic through which particular categories, entities and phenomena acquire their determinate nature. In doing so, it seeks to contribute to sociology’s broader concern with discursive performativity of cancer.
In the face of unprecedented financial and demographic challenges, optimising acute bed utilisation by the proactive management of patient flows is a pressing policy concern in high-income countries. Despite the growing literature on this topic, bed management has received scant sociological attention. Drawing on practice-based approaches, this article deploys ethnographic data to examine bed management from the perspective of UK hospital nurses. While the nursing contribution to bed management is recognised formally in their widespread employment in patient access and discharge liaison roles, nurses at all levels in the study site were enrolled in this organisational priority. Rather than the rational, centrally controlled processes promulgated by policymakers, bed management emerges as a predominantly distributed activity, described here as match-making. An example of micro-level rationing, for the most part, match-making was not informed by explicit criteria nor did it hinge on clearly identifiable decisions to grant or deny access. Rather it was embedded in the everyday practices and situated rationalities through which nurses accomplished the accommodations necessary to balance demand with resources.
The design and implementation of an electronic medical record system pose significant epistemological and practical complexities. Despite optimistic assessments of their potential contribution to the quality of care, their implementation has been problematic, and their actual employment in various clinical settings remains controversial. Little is known about how their use actually mediates knowing. Employing a variety of qualitative research methods, this article attempts an answer by illustrating how omitting, editing and excessive reporting were employed as part of nurses’ and physicians’ political efforts to shape knowledge production and knowledge sharing in a technologically mediated healthcare setting.
Social class, anxieties and mothers’ foodwork
Jan Wright, JaneMaree Maher and Claire Tanner
In the context of concerns about childhood obesity, mothers are placed at the forefront of responsibility for shaping the eating behaviour and consequently the health of their young children. This is evident in a multitude of diverse sites such as government reports, health promotion materials, reality TV shows and the advice of childcare nurses and preschools. These sites produce a range of resources available to mothers to draw on to constitute themselves as mothers in terms of caring for their children’s health. Drawing on a qualitative study of mothers recruited through three Australian preschool centres, this article examines how the working-class and middle-class mothers of preschool-aged children engage with knowledge about motherhood, children and health and how those engagements impact on their mothering, their foodwork and their children. We argue that, unlike the working-class mothers pathologised in some literature on obesity, these working-class mothers demonstrated a no-nonsense (but still responsibilised) approach to feeding their children. The middle-class mothers, on the other hand, were more likely to engage in practices of self-surveillance and to demonstrate considerable anxieties about the appropriateness of their practices for their children’s current and future health.
Finally, the most recent issue of Transcultural Psychiatry is a special issue, entitled “Evidence-Based Practice and Cultural Competence.” Abstracts are below.
The calls for evidence-based practice (EBP) and cultural competence (CC) represent two increasingly influential mandates within the mental health professions. Advocates of EBP seek to standardize clinical practice by ensuring that only treatment techniques that have demonstrated therapeutic outcomes under scientifically controlled conditions would be adopted and promoted in mental health services. Advocates of CC seek to diversify clinical practice by ensuring that treatment approaches are designed and refined for a multicultural clientele that reflects a wide variety of psychological orientations and life experiences. As these two powerful mandates collide, the fundamental challenge becomes how to accommodate substantive cultural divergences in psychosocial experience using narrowly prescriptive clinical practices and approaches, without trivializing either professional knowledge or cultural difference. In this Introduction to a special issue of Transcultural Psychiatry, the virtue of an interdisciplinary conversation between and among anthropologists, psychologists, psychiatrists, and social work researchers in addressing these tensions is extolled.
The different pathways chosen to efficiently and effectively provide relief to those struggling with mental health challenges reflect different assumptions about the human condition and have led to disagreements over which intervention strategies are best suited to particular individuals or populations. Evidence-based practice and culturally competent services, as discussed within the United States, have been characterized as opposites. However, neither approach captures all of the elements that embody the full treatment experience. This article offers a framework that includes the personal identity of the practitioner and the organizational context as two elements that serve as active agents in the helping relationship, although they have rarely been included in the discourse about evidence-based practice or cultural competence. Suggestions for practice, education, and research are included based on this analysis.
Measurement yields perhaps the most critical evidence influencing whether culturally adapted evidence- based practice (EBP) and empirically supported treatments (EST) are deemed more effective for African Americans, Latino/a Americans, Asian/Pacific Islander Americans, Native Americans, and related immigrant groups than standard treatments, as well as for determining the validity of results of surveys of health conditions in nondominant populations internationally. However, little attention has been given to measuring the effects of race and ethnic culture, as experiential constructs rather than sociodemographic categories, on diagnosis, the treatment process, and outcomes. Three meta-analyses of culturally adapted treatments and three studies cited in them were analyzed to determine the ways in which researchers incorporated measurement of racial and ethnic cultural dynamics as explicit factors in any phase of their interventions. The analysis revealed that researchers did not report adapting standard measures to address cultural influences, nor did they define symptoms from participants’ cultural or racial experiences. The author concludes that although there are criteria for judging good research designs, which may or not be feasible for research on nondominant racial and ethnic groups, there are no paradigms for developing measures or for interpreting existing measures to incorporate ethnicity and racialized experiences. Some principles from cross-cultural assessment research (i.e., functional, conceptual, metric, and linguistic equivalence) are adapted to suggest how measures for investigating the effectiveness of culturally adapted interventions for nondominant ethnic and racialized groups might be developed and/or used more appropriately throughout the course of the intervention.
“Shattering culture”: perspectives on cultural competence and evidence-based practice in mental health services
Mary-Jo DelVecchio Good and Seth Donal Hannah
The concept of culture as an analytic concept has increasingly been questioned by social scientists, just as health care institutions and clinicians have increasingly routinized concepts and uses of culture as means for improving the quality of care for racial and ethnic minorities. This paper examines this tension, asking whether it is possible to use cultural categories to develop evidenced-based practice guidelines in mental health services when these categories are challenged by the increasing hyperdiversity of patient populations and newer theories of culture that question direct connection between group-based social identities and cultural characteristics. Anthropologists have grown concerned about essentializing societies, yet unequal treatment on the basis of cultural, racial, or ethnic group membership is present in medicine and mental health care today. We argue that discussions of culture—patients’ culture and the “culture of medicine”—should be sensitive to the risk of improper stereotypes, but should also be sensitive to the continuing significance of group-based discrimination and the myriad ways culture shapes clinical presentation, doctor–patient interactions, the illness experience, and the communication of symptoms. We recommend that mental health professionals consider the local contexts, with greater appreciation for the diversity of lived experience found among individual patients. This suggests a nuanced reliance on broad cultural categories of racial, ethnic, and national identities in evidence-based practice guidelines.
Practice to research: Integrating evidence-based practices with culture and context
Thomas S. Weisner and M. Cameron Hay
There are ways to integrate culturally competent services (CCS) and evidence-based practices (EBP) which can improve the experiences of patients and their families and communities when faced with health problems, as well as the effectiveness and positive experiences of practitioners. CCS and EBP evidence should be jointly deployed for helping patients and clinicians. Partnership research models are useful for achieving the integration of CCS and EBP, since they involve close observation of and participation by clinicians and practitioners in the research process, and often use integrated qualitative and quantitative mixed methods. We illustrate this with 3 examples of work that can help integrate CCS and EBP: ongoing collection of information from patients, clinicians and staff, or “evidence farming”; close study and continuous improvement of activities and accommodations; and use of evidence of tacit, implicit cultural scripts and norms, such as being “productive,” as well as explicit scripts. From a research practice point of view, collaborative partnerships will likely produce research with culture and context bracketed in, and will contribute stronger research models, methods, and units of analysis.
Toward a cultural adaptation of pharmacotherapy: Latino views of depression and antidepressant therapy
Sylvanna M. Vargas, Leopoldo J. Cabassa, Andel Nicasio, Ana Alicia De La Cruz, Elizabeth Jackson, Melissa Rosario, Peter J. Guarnaccia, and Roberto Lewis-Fernández
Relative to non-Latino Whites, Latinos in the United States with major depressive disorder (MDD) show low engagement in antidepressant therapy, whether engagement is defined as pharmacotherapy access, medication initiation, pill-taking, or treatment retention. One potential reason for this disparity in depression care is the low cultural congruence of pharmacotherapy for this population. To examine Latinos’ views of depression and antidepressant therapy, we conducted qualitative interviews with 30 Latino outpatients initiating antidepressants prior to their first treatment visit using the semistructured Treatment Adherence and Retention Questionnaire. These baseline interviews were randomly selected from data collected for a randomized controlled trial testing a novel intervention to enhance engagement by depressed Latino outpatients. Participant narratives were analyzed using open coding and the iterative analytical approach derived from grounded theory. Patient views about depression addressed stigmatizing views held by others in their social circle. Most participants directly refuted these views by providing alternate explanations to depression experiences. Antidepressant therapy narratives also revealed marked stigmatization, but participants tended not to refute these views. Instead, patients expressed concerns about antidepressants and showed marked ambivalence about seeking psychiatric care. Participants, however, did suggest ways in which clinicians and patients might collaborate to address their concerns about antidepressants. Some cultural views, such as concerns about addiction to or dependence on medication, may be negotiable barriers to treatment. Prescribing clinicians should address cultural views and concerns in order to improve Latino engagement in antidepressant therapy.
Now that the crisis has waned, will we continue to discuss Ebola as a persistent threat? Or will we let ourselves forget, right up until the next terrifying epidemic?
The process of rebuilding lives and social systems after Ebola is in progress (see NPR’s multimedia presentation “Life After Death“). The possibility that Ebola will become endemic – existing at a constant rate within the human population in affected areas of West Africa – portends a new normal, which some characterize as a sign of failure. Lassa fever, which is a severe and often fatal hemorrhagic illness caused by Lassa virus, is already endemic in the area. The aftermath for MSF is continued work in the face of continued sorrow. The aftermath for WHO involves reconsideration and reform.
We have had our own aftermath in my local area. Only hours after my last Web Roundup (Ebola Update) came the news that Dr. Craig Spencer had tested positive for the virus and was being treated at Bellevue Hospital. I was scheduled to attend a conference at the adjacent NYU medical center the next morning (A Symposium on World Polio Day and Dr. Salk’s Centenary). Should I be afraid of catching Ebola? I wondered. I wasn’t particularly concerned. Will the conference be cancelled? No, I thought, most of the people there are infectious disease specialists, so this is unlikely to worry them too much. (I should have worried more about the traffic, particularly since the media response caused a great deal of chaos in the area.) Dr. Spencer has written this article about his experiences, which provides valuable insight into the crisis from his unique point of view.
The next quarantine crisis involved Kaci Hickox, New Jersey Governor Chris Christie, and a Maine town. Plenty of people have had a great deal to say about that one (even me). The focus on the ethical dimensions of Ebola continues in public, academic, and official government discourse. Vaccine trials have raised questions about the ethics of using placebo controls as well as the persistent effects of mistrust.
So, what comes next? I have had the great fortune of taking courses in the past on emerging infectious disease from Dr. Stephen Morse at Columbia Mailman School of Public Health. He recently alerted me to a recent IOM conference on Ebola, and a number of the presentation slides are available here. I have long trusted his insight into viruses in general, and perhaps the accuracy of his past predictions about Ebola (made in August 2014) will convince you as well. So at least we may be reassured that Ebola will not suddenly evolve to be airborne. At a recent lecture, Dr. Morse also identified the potential importance of rehydration therapy for treating Ebola, suggesting that lessons learned from Cholera in the past may find new applications.
- And a new worry: It is possible that Ebola could be transmitted through sex.
- The number of links I have been collecting on this topic is large, so I am in the process of attempting to organize them on delicious.com @smbergst [Ebola]. This is a bit of an experiment to see if this particular organizational format proves useful for academic and academic-adjacent endeavors. I am apparently one of the very few to use it for anything Ebola-related.
- Even as one arc of suffering comes to an end, there is always another ready to take its place. Sometimes we find ourselves connected to these events through the intricacies and intimacies of long-term fieldwork relationships across global communities. This is the now the case for my friend and fellow medical anthropologist Dr. Jan Brunson at University of Hawai`i:
- Support Mothers in Nepal Quake: “I am a scholar and a professor of cultural anthropology, not someone typically involved in social work or humanitarian efforts. But because the people of this community hold a special place in my heart, I feel I must try to support them in this time of dire need. This community, Budhanilkantha, is no more deserving of your support than any other community in Nepal, but it is also no less deserving. And because of my personal and professional long-term connection to this place, I can promise that donations will directly assist pregnant women and new mothers and their families as they struggle to rebuild their lives. Thank you for considering donating – even the smallest amount will be appreciated. Namaste.”
Jamie Cohen-Cole’s The Open Mind: Cold War Politics and the Sciences of Human Nature by Marie Elizabeth Burks
University of Chicago Press, 2014, 368 pages.
The Closed World of the Open Mind
In Jamie Cohen-Cole’s hands, the concept of the open mind becomes an effective historiographical tool with which to trace some of the intersections of the social sciences and American political culture during the Cold War. Cohen-Cole shows how open-mindedness—“a kind of mind characterized by autonomy, creativity, and the use of reason” (2)—became a salient notion in postwar America. He argues that, for an elite community of intellectuals and scientists, policy makers, foundation officers, and university administrators, the image of the open mind was capacious enough to “unify the political and intellectual desiderata of the time” (2).
There is growing interest among historians of science in how social scientists and other experts thought about thinking during the Cold War. One group of authors contends that efforts to define rationality constituted a central project of the postwar human sciences, representing a quest to simultaneously unify disciplines and stave off nuclear war.[i] Historians have also begun to emphasize that the character of the social sciences wasn’t determined by the national security state and its demands. Social scientists’ working relationships with government and military agencies were in fact often characterized by ambivalence, negotiation, and even intellectual autonomy.[ii] Echoing these voices, Cohen-Cole points out that there is not always “a clear and direct connection between the forms of human reason analyzed in the sciences and Cold War military imperatives,” and that “significant segments of social science operated on a much broader political register than those defined by military concerns” (7). The Open Mind is a study of Cold War rationality on this broader register.
Using archival materials culled from scholars’ personal papers, foundation grant files, institutional and administrative records, course lecture notes, and interviews, Cohen-Cole maps aspects of the history of psychology and related fields in the second half of the twentieth century onto a narrative familiar to American historians—the rise and fall of the so-called “postwar liberal consensus.” He argues that the open mind helped produce this apparent political consensus. The historian of science Sarah Igo demonstrated in her pioneering study The Averaged American: Surveys, Citizens, and the Making of a Mass Public that examining an era’s social scientific tools can be a way of getting a handle on its political culture.[iii] Cohen-Cole shows that “[i]t was not Zeitgeist, nor hegemonic ideology” that produced the consensus and conformity of midcentury, “but specific psychological technologies” (7).
The story begins before the onset of the Cold War, with a look at debates over curricular reform at the secondary and college levels starting in the 1930s and culminating in the work of a committee established by Harvard president James Bryant Conant in 1945. In its published report, General Education in a Free Society (1945), the committee concluded that, in order to meet the demands of citizenship in a complex capitalist society, students ought to be equipped with a universal mental skill set for evaluating different forms of expertise. Cohen-Cole argues that the committee’s vision of American society—as “a disparate community of experts held together by the rational abilities of its citizens to communicate across the boundaries of expertise” (27)—mirrored the social and intellectual environment of Harvard itself, as in interdisciplinary settings such as the Society of Fellows.[iv] This theme—social and intellectual worlds as mirror images—recurs throughout the book.
The second chapter analyzes the efforts of social scientists and social critics who were anxious about the consequences of conformity to develop tools for probing individual character in the 1940s and 1950s. They used these tools to pathologize political views that were thought to fall to the right or left of center, and thus helped produce and police a centrist political culture. One of Cohen-Cole’s primary examples is The Authoritarian Personality (1950), a large scale study co-authored by Theodor Adorno and the psychologists Else Frenkel-Brunswik, Daniel Levinson, and R. Nevitt Sanford. These social scientists understood authoritarianism, defined along scales of ethnocentrism, authoritarianism or facism, and anti-Semitism, as a “syndrome” that could be diagnosed through the administration of a battery of surveys, interviews, and projective tests. The Authoritarian Personality explained ethnocentrism in terms of cognitive deficits, such as “rigidity” and “intolerance of ambiguity” (41). Cohen-Cole points out that built into these tools were lay understandings of the qualities the tools were supposed to measure, so that instruments that claimed the mantle of scientific objectivity in fact “aligned closely with cultural and socioeconomic divisions in American culture” (45). Researchers found that scientists were creative and nonconformist, while military officers were just the opposite; that women were more conformist than men; and that authoritarianism was inversely correlated with education level and class. Some liberal intellectuals would mobilize these categories and concepts to frame political issues in terms of individual psychology, dismissing those they disagreed with—from the “radical right” to bohemians and Beats—as psychologically impaired.
The social scientists who helped produce this discourse on self and society saw the academy as a model for American society, and they saw themselves as the ideal open-minded Americans. Cohen-Cole suggests that what looks to us like comically myopic self-regard was to his actors a distinctive kind of “reflexivity,” or the “interplay between self-knowledge and scientific psychological knowledge” (142). At Harvard and elsewhere in the decades after World War II, interdisciplinarity, which had roots in the earlier decades of the twentieth century and had demonstrated its prowess during the war, became an “epistemic virtue” (256). Social scientists, public and private patrons such as the Ford Foundation, the Carnegie Corporation, and the National Science Foundation, and university administrators alike all championed the cause of interdisciplinarity, which seemed to them the perfect representation of a pluralist society. (Disciplinary knowledge, by contrast, was characterized as undemocratic.)
For these scholars, there was no reason to distinguish between the social world of the academy and society writ large. People were worried about how to guard against mediocrity and alienation in both spheres. Prevailing intellectual trends such as game theory and the study of small groups allowed academics to generalize across levels. The small group appeared to some to be the fundamental unit of society, whether the neighborhood community or the National Security Council. The conference was an object of intense scholarly fascination, and this could get very meta: Margaret Mead, for example, conducted ethnographic studies of conferences sponsored by the United Nations that were themselves dedicated to the study of conferences as a social form. The Macy Conferences on cybernetics held in the late 1940s and early 1950s were similarly introspective, “an immediate testing ground for the idea of circular feedback” (111).
Cohen-Cole introduces the “salon” as a key site for the production of social scientific knowledge in the decades after World War II. Institutes, conferences, discussion groups, workshops, cocktail parties—these were the places and spaces outside of established institutions, disciplines and departments where academics rubbed elbows with “social critics, policy makers, educators and foundation officials” (127). The salon was a new form of life, and it thrived in the institutional cultures of places like the RAND Corporation, Stanford’s Center for Advanced Study in the Behavioral Sciences, and MIT’s Center for International Studies (CENIS), and in the elite social circles of Cambridge, New York, and Washington, D.C. It was in the context of the Cold War salon that social scientists and others not only discussed open-mindedness but also performed it for one another. This was, to be sure, an extremely exclusive world that worked to keep out not only Communists and the otherwise dogmatic and ideological, but also anybody who did not possess the “norms of selfhood as defined by liberal social thinkers” (106). But it was also a world of intimacy and conviviality, where brisk walks in the sunshine and gin fizzes made fuzzy the boundaries between academic and social life.
Three chapters of the book are given over to an examination of the relationship between the open mind and the rise of cognitive science. As they fought for legitimacy, cognitive scientists drew from popular culture and social psychology to craft their own self-images, and then used these self-images to construct their models of human nature. They employed scientific processes as metaphors for everyday cognition, so that “scientific cognition functioned as a model of all human thought in the same way that fruit flies, tobacco mosaic viruses, nematode worms, yeast, and laboratory mice have served as models of the genetics, biochemistry, and physiology in all organisms” (165). Cognitive scientists challenged the reign of behaviorism, which understood human learning in terms of stimulus and response and considered the murky depths of cognition beyond the ken of psychological investigation. One of their strategies was to attack behaviorists themselves, characterizing their thought processes as narrow, ideological, and dogmatic.
Cognitive scientists also used their new theories about human thinking to organize their own research. Harvard’s Center for Cognitive Studies, the first institutional home of the emerging field of cognitive science, is a case in point. The Center was founded in 1960 by the psychologists Jerome Bruner and George Miller, who felt constrained by the prevailing intellectual cultures of their respective departments, Social Relations for Bruner and Psychology for Miller. With funding from the Carnegie Corporation, and later the NIH, the NSF, the U.S. Office of Education, and the Defense Research Projects Agency, they set out to create an extradepartmental, interdisciplinary research center that would stand methodologically and physically apart. The psychologists, linguists, philosophers, and other scholars who came together in the heady atmosphere of the Center in the early 1960s did much to make the human mind a legitimate object of scientific inquiry. A unique research culture prevailed at the Center, characterized by interdisciplinary collaboration amid a general atmosphere of “[f]reedom and flexibility” (175).
Cohen-Cole finds that interdisciplinary work at the Center was characterized by “tool exchange”: researchers from different disciplines “made a regular practice of peering into and borrowing from their colleagues’ toolkits.” Here he contributes to a growing body of scholarship that contemplates the place of tools in the social sciences.[v] Some have attributed the so-called “cognitive revolution” to the advent of the computer and the drawing of analogies between mind and machine. Cohen-Cole argues that this is too simplistic. Cognitive scientists may have adopted the computer as a tool, but the kind of mind and features of human nature they modeled were not determined by the machine. Cohen-Cole makes the case that the culture of interdisciplinarity at the Center, and not the mere presence of a PDP-4 computer, had much to do with the ascent of cognitive science.
In the penultimate chapter, the narrative comes back around to pedagogy, taking as its subject Jerome Bruner’s efforts to further promote cognitive scientific knowledge through the development and dissemination of an elementary social studies curriculum called “Man: A Course of Study” (MACOS). With support from the National Science Foundation and the Ford Foundation, Bruner mobilized Cambridge intellectual culture for curricular reform. The idea was that elementary school children were to learn to think like social scientists—much like the Harvard conception of general education, the emphasis was on learning how to think rather than what to think. Human equality was a fundamental principle, and MACOS “was structured in a way that fostered a liberal sensibility” (214). The program achieved a wide audience, taught to 400,000 students in 1,700 schools at its peak in 1972.
As the last chapter makes clear, in the early 1970s MACOS would become a victim of its own success, serving as a lightning rod for the burgeoning conservative movement. Opposition took root in local school boards, and soon drew the attention of national conservative leaders, who objected to what they perceived as liberal values built into the curriculum. Cohen-Cole argues that resistance to MACOS “operated as a political training ground,” and “crystallized a series of conservative views and organizational techniques that became characteristic of a newly political Christian right” (242). Conservatives, however, were not the only ones to attack the coupling of open-mindedness and midcentury liberalism. This chapter also finds leftist intellectuals and students, beginning in the early 1960s, challenging centrist social thought, which they cast as ideology masquerading as apolitical, objective science. They claimed the virtues of open-mindedness for themselves, and charged that centrist social scientists were anything but free-thinking. Intersections of the social and human sciences with second-wave feminism produced critiques of entrenched sexism and racism within the academy. These assaults from left and right upon the centrism that had prevailed at midcentury led to a “fractured politics of human nature” by the mid-1970s, the endpoint of Cohen-Cole’s story.
Cohen-Cole demonstrates the value of irony as a rhetorical device for the historian. At the center of this account is a group of elite intellectuals who “often imagined America as a diverse group of experts whose differences could be overcome through intimate dinners or cocktail parties” (257). It would be all too easy to reproach them for their inability to see or think beyond themselves and their rarefied world. But Cohen-Cole has chosen an ironic interpretation instead. The observer of the past who favors such an interpretation “must be able to appreciate both elements in the incongruity that go to make up the ironic situation, both the virtue and the vice to which pretensions of virtue lead,” the historian C. Vann Woodward once wrote. “He must not be so hostile as to deny the element of virtue or strength on the one side, nor so sympathetic as to ignore the vanity and weakness to which the virtue and strength have contributed.”[vi] The Open Mind gives both the virtue and the vice their due.
[i] Paul Erickson, Judy L. Klein, Lorraine Daston, Rebecca Lemov, Thomas Sturm, and Michael D. Gordin, How Reason Almost Lost Its Mind: The Strange Career of Cold War Rationality (Chicago: The University of Chicago Press, 2013).
[ii] For accounts of the intellectual ambiguities of social scientific research sponsored by government and military agencies, see, for instance, Mark Solovey, Shaky Foundations: The Politics-Patronage-Social Science Nexus in Cold War America (New Brunswick: Rutgers University Press, 2013); Joy Rhode, Armed with Expertise: The Militarization of American Social Research during the Cold War (Ithaca: Cornell University Press, 2013); and David Engerman, Know Your Enemy: The Rise and Fall of America’s Soviet Experts (New York: Oxford University Press, 2011).
[iii] Sarah Igo, The Averaged American: Surveys, Citizens, and the Making of a Mass Public (Cambridge, Mass.: Harvard University Press, 2008).
[iv] Another recent book that links ideas and epistemology with interdisciplinarity in the mid-twentieth century is Joel Isaac’s study of the flowering of “scientific philosophy” within Harvard’s “interstitial academy,” or the institutional spaces between more established disciplines and programs. In Joel Isaac, Working Knowledge: Making the Human Sciences from Parsons to Kuhn (Cambridge, Mass.: Harvard University Press, 2012).
[v] See for example Rebecca Lemov, “‘Hypothetical Machines’: The Science Fiction Dreams of Cold War Social Science,” Isis 101 (2010): 409 and Joel Isaac, “Tool Shock: Technique and Epistemology in the Postwar Social Sciences,” History of Political Economy 42 (2010): 135.
[vi] C. Vann Woodward, The Burden of Southern History (Baton Rouge: Louisiana State University Press, 2008 ), 193-194.
Marie Burks is a PhD candidate in MIT’s Program in History, Anthropology, and Science, Technology, and Society (HASTS). She studies the history of the modern social sciences.
Abstract: The original building at the entrance to the Accra Rehab Centre dates back to the 1950s when it hosted the Gold Coast Society for the Blind. Under the watch of former and first president Kwame Nkrumah, this plot of land was appropriated and reassigned as a site for rehabilitation of people with a range of impairments. By the turn of the century, ‘The Centre’ (in local parlance) had transformed into a hub of disability-oriented activity so that on any given day a steady stream of people would be moving about the compound engaged in attending self-help meetings, organizing press conferences, conversing in sign language, distributing white canes, or preparing for a wheelchair marathon. Over the decades, numerous national organizations established headquarters in the compound – such as Ghana National Association of the Deaf, Ghana Society of the Physically Disabled, and an umbrella group called Ghana Federation of the Disabled. This essay begins by asking how happenings at and around ‘The Centre’ help to tell a located history of disability. Following Mei Zhan’s use of “worlding” as an analytic, we can see that while ‘The Centre’ is located in Accra and ostensibly exists to serve Ghanaian citizens with disabilities, its history reveals an original and ongoing dynamic of translocality and globalization. It has always been fundamentally connected to points elsewhere. ‘The Centre’ itself can therefore be treated as an archive housing knowledge-making processes and products which help us to better understand how people with disabilities in global South contexts have created inhabitable worlds originally and continuously entangled with global North entities and individuals.
This essay provides a brief history of the worlding of the Accra Rehabilitation Centre by treating it as an archive of disability happenings over the past sixty years. Located in the Adabraka section of the city directly across Barnes Road from the National Museum, and diagonally opposite the Holy Spirit Cathedral, in the early years of the twenty-first century people usually refer to it simply as ‘The Centre.’ Rectangular in shape, the grounds are lined on three sides by cement block buildings, and shaded by several sturdy trees including a prolific mango on the southern end of the compound. The oldest building dates back to the 1950s and still borders the western side along Barnes Road. With a corrugated iron roof, it is a long ground level structure with gated windows and doors – behind which we find offices, a computer lab, a Braille press, workshops and a showroom for products, plus an income-generation venture in the form of a chalk-producing factory.
Many Ghanaian “disables” (a term used by people with disabilities in Accra to refer to themselves) consider ‘The Centre’ to be a critical locale in their ongoing movement toward greater accessibility and fulfillment of their rights.[i] It can be used, therefore, almost as an archaeological site, or an archive, in our excavations of disability world history. As Achille Mbembe and Sarah Nuttall have suggested:
In the attempt to overturn predominant readings of Africa, we need to identify sites within the continent, entry and exit points not usually dwelt upon in research and public discourse, that defamiliarize commonsense readings of Africa. Such sites would throw people off their routine readings and deciphering of African spaces. Identifying such sites entails working with new archives—or even with old archives in new ways. …. Moreover, identifying many such sites at times implies drawing on new critical pedagogies—pedagogies of writing, talking, seeing, walking, telling, hearing, drawing, making—each of which pairs the subject and the object in novel ways to enliven the relationship between them and to better express life in motion.[ii]
To highlight this archive’s original and ongoing dynamic of translocality and globalization, this essay emphasizes a kind of vortical flow I imagine enlivening The Centre over many decades. That is, centripetal forces have brought people from near and far to work on disability issues, and centrifugal forces have sent Ghanaian “disables” out in a far flung manner to play wheelchair basketball in New York City, to earn masters degrees in places such as Vermont, to perform in dance concerts in Germany and Spain, and so forth. To point to The Centre’s translocality means resisting methodological nationalism and instead tracing various disability-oriented populations that have circulated trans-nationally and helped to create the dynamism of this site.[iii] In this brief piece I will provide a smattering of examples of this vortical flow in an effort to better understand how people with disabilities in global South contexts have created inhabitable worlds originally and continuously entangled with global North entities and individuals.
A prime piece of real estate by the beginning of the twenty-first century, this Accra-based site for disability assembly and organizing dates back to the early 1950s when the British Empire Society for the Blind leased the plot of land from a family. The Gold Coast was a former British colony that gained independence as the Republic of Ghana in 1957 under the leadership of socialist and pan-Africanist Kwame Nkrumah. The local chapter of the British Empire Society held their meetings at this location (Figure 2), and ran a vocational training program for blind men who boarded in an on-site dormitory. While I have not been able to confirm this with documentary evidence, several people told me that Kwame Nkrumah used to walk through the compound on his way to Parliament and stop to talk and learn about the activities blind rehabilitees were engaged in, such as the ball game displayed in Figure 3 or musical activity shown in Figure 4.
This interest may have stemmed simply from the fact that as Prime Minister and later President, Dr. Nkrumah served as patron of the Society for the Blind.[iv] Regardless of the origin of his concern for people with disabilities, in 1959 Nkrumah directed his Cabinet to the widespread problem of “disablement” throughout the country, and they immediately formed a commission to survey the problem. Sir John Wilson (Chairman of the Royal Commonwealth Society for the Blind) led the commission, and upon receipt of Wilson’s report, a “Rehabilitation Division” was established within the general structure of the Department of Social Welfare and Community Development. Historian Jeff Grischow demonstrates how Nkrumah and the Convention People’s Party saw rehabilitation as a critical step toward integrating disabled people into the workforce, which would thereby expand the supply of skilled labor and contribute directly to the nation’s economic growth.[v] The Centre, therefore, was taken over by the government and transformed from a singular focus on blindness to an industrial rehabilitation training unit engaging deaf and physically disabled individuals as well.
On the 1st of February 1963 the Daily Graphic – currently known as Ghana’s “biggest selling newspaper” – published an article headlined “Accra Disabled Centre Opens.” The piece reads in toto:
A rehabilitation training unit for physically handicapped persons opens in Accra today with 60 students. They will be given free courses in various trades such as carpentry and tailoring. According to a spokesman for the unit, the courses are designed to be of three months duration at the end of which the students will be tested and the successful ones found jobs. The failures will continue with the courses until they become perfect in their fields. The unit is one of many others being opened by the Government in the country. It is Government’s plan to rehabilitate all physically handicapped persons and to make them useful citizens.[vi]
During this same period, the state set up rehabilitation centers in all of Ghana’s regions, initiated a national campaign to count and “register the disabled,” and established a National Trust Fund to raise money for voluntary associations to provide services augmenting those of the state. “Disability” as a concept in Ghana was expanding to encompass not only blindness, deafness, and physical impairments, but leprosy, TB, mental illness, etc. The Centre was narrowly focused, in the early days, on British-derived processes of social orthopedics, but a goal of the Trust Fund was to help support a wide range of people categorized as “destitute and disabled.” The years spanning 1957-1966 were heady times for Ghana as Nkrumah and the Convention Peoples Party (CPP) were riding high on the winds of independence and working to implement their Seven-Year Plan of development. Newspapers from this period are filled with articles describing Mr. W.A.C. Essibrah traveling the country to “register the disabled.” Year after year the press dutifully reported the numbers, demonstrating the same kind of “bio-bureaucracy” or “biogovernance” Matthew Kohrman has documented for China where emphasis was placed on collecting vital statistics and making systematic calculations to improve the well-being and productivity of the population.[vii]
At the same time as this intense drive to register people with disabilities and build up the Trust Fund chest, a few disabled people themselves were beginning to reject practices of pity and charity and organize instead around principles of self-determination. Since the mid 1940s a fair number of blind people had been able to attend school (see Appendix for timeline), resulting in an educated cadre who formed Ghana’s first DPO established and managed by disabled people themselves. Ghana Association of the Blind (GAB) was inaugurated on the 15th of December 1963 by Lawrence Ansong, Paul Dotse, and Ben Quaye who believed that blind people themselves could run their own organization. “Blind persons’ progress,” Mr. Ansong said they called it back then. He had been a student in the sheltered workshop of The Centre, and when I interviewed him and asked about those early days he emphatically said that GAB was different than GSB (Ghana Society for the Blind): “We did everything for ourselves; all officers were blind … it’s an association OF, not FOR the blind. It’s blind only. We do everything.” While the Society for the Blind consistently maintained offices at The Centre, it wasn’t until the early 1990s that GAB obtained the blue shipping container (Figure 5) for an office (prior to that they met at schools, private residences, etc.). When I interviewed Eleazar Plahah – long term leader in GAB and the Federation – he exclaimed, “I hope it is still blue!” They proudly and very purposefully maintain this structure, and in 2010 it was serving as a distribution site for white canes.
The price of Ghana’s main export – cocoa – dropped dramatically in the 1960s, which eroded the basic stability of the nation’s economy, and this downward spiral persisted into the 1970s and 80s. People faced food shortages, extensive unemployment, deterioration of transportation infrastructure and communication networks, environmental degradation, and declining health and social welfare systems. What effect did this have on The Centre, on DPOs, and on the lives of PWD? Eleazar Plahar (who was leading GAB at that time) told me, “In 1983-84, that’s when we had our rule of the PNDC. So life was very difficult and most of the members who were coming [to meetings, to The Centre], they were coming because of items that you could secure. Our government was distributing items through organized societies.” The Centre became progressively dilapidated; no government agency took responsibility for its upkeep. What little attention it received came from the original renters – Ghana Society for the Blind – and this was through charitable giving on the part of a proliferating array of internationally sponsored NGOs.
The United Nations declared 1981 the International Year of Disabled Persons, and 1983-1993 was set as the International Decade of Disabled Persons. This backdrop sets the stage for certain dimensions of “worlding” of The Centre during this period. Up until this point people with physical disabilities looked to the “Crippled’s Aide Society” for support and representation. But with a global push toward rights-oriented programming for people with disabilities, a group formed the Ghana Society of the Physically Disabled (GSPD) in the early 1980s. In relating an origin story to me, one of the founders, Attakora Asamoa, explained, “The blind had their own organization, and the deaf had their own organization, but nothing existed for physically disabled people.” In the context of food rationing, this kind of self-help/support group was crucial for survival.[viii] He also cited a Ghanaian proverb to emphasize the significance of this development for people with physical disabilities: “He who wears the shoe knows where it pinches.”
The UN Decade on Disability also mandated that as many countries as possible create legislation for PWD. To spearhead the efforts the UN required that a “federation” of disabled organizations be established. Dr. Essel Ben Hagan (one of the early leaders of GSPD) explained that leaders and representatives from all the DPOs were coming together during that time and eventually formed a steering committee to work on drafting a disability policy. In the 1980s, there was a concerted effort at networking internationally and attracting donors and the formation of “Ghana Federation of the Disabled” came about with a fair amount of funding and technical support from NORAD – a Norwegian Development organization, and its associated group Handicap Foribund Society of Norway. They initially provided over 1 million dollars to set up Jachi Training Center, a site for rehabilitation as well as workshops on capacity building and awareness campaigns (located in the city of Kumasi). Ghana disability organizers then received another installment from Norwegian groups in 1988 and used it to set up the Federation of Disabled Associations (FODA), which was later re-named Ghana Federation of the Disabled (GFD) and re-located to an office at The Centre in Accra.
In 1992 Ghana adopted a new constitution. It contained some minimal language about disabilities in that Article 29 noted the “need for PWD to be protected … [and] made to feel an integral part of society.”[ix] Disability organization leaders considered these few words, which focused on protection rather than rights, to be woefully inadequate. So, in the words of Lawrence Ofori Addo, they “started a process of developing the National Disability Policy and the Act in the draft form … [We began] moving up and down until finally, we were able to get those things together.” The Centre was a major staging ground as PWD spent the 1990s working on strengthening DPOs (capacity building), on creating Community Based Rehabilitation initiatives (decentralization), and on lobbying the government to pass the Disability Act (legislation). In my interview with Lawrence Ofori Addo, he discussed the role of CBR during the years 1992-96: “I coordinated the introduction of the Community-Based Rehabilitation Program, which was a joint project between UNDP and two Scandinavian NGOs – the Norwegian Association of the Disabled and the Swedish Handicap International Aid Foundation – SHIAF. Deliverables from that project were the development of the National Disability Policy and then the Disability Act.” Here we see the “fundamental connection to an elsewhere”[x] that made and continue to make up the world of Ghana’s disability rights movement and The Centre. Lawrence Ofori Addo explained that “we had support from the disability movement in Scandinavia” to “allocate some of the funds” for “development of [disabled peoples] organizations.” Ghanaian DPOs have been globally entangled from their inception, and so creation of The Centre’s inhabitable worlds simultaneously created NGO-scapes where numerous actors from global North contexts have made and continue to make a living.
During the first decade of the 21st century, The Centre was a hub of activist energy aimed at political and social changes that would create better worlds for people with disabilities. Like a vortex, it spawned and preserved emergent forces. Several income generation ventures were launched from The Centre, most notably a chalk-making factory, which produced jobs for a small number of individuals allowing them to enter the formal economy for the first time in their lives (see figures 8, 9, and 10). It was difficult for the business to compete with cut-rate prices of chalk imported from China, however, and the factory has recently gone into demise.
Several new DPOs formed and joined Ghana Federation of the Disabled: Parents Association of Children with Intellectual Disabilities (in 2001); Society of Albinos Ghana (in 2003); and Sharecare Ghana for people with rare neuro-immunological diseases (in 2006). In addition to this centripetal motion that spontaneously formed new disability groups, The Centre had its centrifugal motion as well with the Federation attracting an 80,000 pound grant in 2005 from Rights and Voice Initiative (RAVI). Funds were earmarked for two years of advocacy and lobbying, and on the 23rd of June, 2006, Parliament finally passed Ghana’s Disability Act (Act 715). One of the first actions required by the Act was to form a National Council on Persons with Disability (based, in part, on the National Council on Disability of the United States). A year later, however, no council was even in sight, and at the launching of a National Disability Day (on the anniversary of passage of the Act), numerous people lamented the snail’s pace in getting the council set up. It was not until 2009, in fact, that members of the National Council on Persons with Disability (NCPD) were presented to the public.
In conclusion, this brief historical account of the worlding of Accra’s Rehab Centre shows that it has always been connected to points elsewhere. While Ghanaians themselves did not suggest The Centre as a vortex of their disability movement, the metaphor helps us imagine the role this site has played in over sixty years of consciousness raising, organizing, and advocacy. Treating The Centre as an archive housing knowledge-making processes and products, we can further trace its translocality in an effort to flesh out a situated example of how people with disabilities in global South contexts have created inhabitable worlds originally and continuously entangled with global North individuals and entities.[xi]
Short Timeline of Disability-Oriented Events in Ghana
1945 Establishment of the Akropong School for the Blind in the Gold Coast.
1951 Opening of a branch of the British Empire Society for the Blind in the Gold Coast.
1957 Gold Coast achieved independence from British rule on the 6th of March.
1958 First School for the Deaf established in Osu (Christianborg) by Rev. Dr. Andrew Foster. The school was later relocated to Mampong Akwapem in the Eastern Region.
1963 On 1st February, 1963, the Industrial Rehabilitation Centre in Accra was opened. Ghana Association of the Blind was formed on 25th December.
1968 Ghana National Association of the Deaf (GNAD) established.
1980 Formation of GNASOC: Ghana National Society of the Crippled (which was later changed to GSPD: Ghana Society of the Physically Disabled.
1987 Formation of FODA: Federation of Disabled Associations (later renamed GFD: Ghana Federation of the Disabled).
2001 Formation of PACID: Parents Association of Children with Intellectual Disabilities.
2003 Formation of SOAG: Society of Albinos Ghana.
2006 Disability Act (Act 715) was passed by Parliament on the 23rd of June. Sharecare Ghana: an association for people with rare neuro-immunological diseases was also formed this year.
2009 Members of the National Council on Persons with Disability (NCPD) were presented to the public on the 7th of April .
My essay title was inspired by Simone AbdouMaliq’s 2001 piece “On the Worlding of African Cities” in African Studies Review 44(2):15-41.
[i] The term “disables” most likely came into existence as a Ghanaian English rendering of “disabled.” It is used quite unselfconsciously by most, but when I have asked individuals about how it came about, some suggest it is a result of “illiteracy” and a kind of “broken English” spoken by people without much formal education while others argue it is used by members of the movement in an identity claiming capacity to mean “People with Disability.” One way or another, rather than being a pejorative term, it is either fairly neutral or quite positive in this context.
[ii] Achille Mbembe and Sarah Nuttall, “Writing the World from an African Metropolis,” Public Culture 16, issue 3 (2004): 347-372.
[iii] Translocality stems from Arjun Appadurai’s globalization theory. See especially chapter 9 of Modernity at Large: Cultural Dimensions of Globalization published in 1996 by the University of Minnesota Press.
[iv] For additional ideas about Nkrumah’s interest in disability, see Jeff D. Grischow, “Kwame Nkrumah, Disability, and Rehabilitation in Ghana, 1957-1966,” The Journal of African History, 52, issue 2 (2011): 179-199. Grischow suggests that Nkrumah was acquainted with Sir John Wilson who was not only blind himself but also a founding member of the Royal Commonwealth Society for the Blind. This personal connection may have influenced Nkrumah’s interpretations of a finding that a majority of “beggars and destitute citizens” had various disabilities (p. 187).
[v] Grischow, ‘Kwame Nkrumah, Disability, and Rehabilitation in Ghana’, 198.
[vi] “Accra Disabled Centre Opens” Daily Graphic, page 5, February 1, 1963.
[vii] Matthew Kohrman, “Why Am I Not Disabled? Making State Subjects, Making Statistics in Pose-Mao China,” Medical Anthropology Quarterly 17, issue 1 (2003):5-24.
[viii] See paper delivered at Society for Disability Studies conference, June 20-23, 2012: “Creating a Political Community” to Marshall Change: Origin Stories told by Disability Rights Activists in Ghana, by Kathryn Geurts.
[ix] From a publication titled Public Agenda: Decentralisation Agenda (3 July, 2008).
[x] Mbembe and Nuttall, ‘Writing the World from an African Metropolis’, 351.
[xi] This piece is a necessarily brief exploration of issues that are taken up in a book I am currently working on tentatively titled Disability Sensibilities in Metropolitan Accra 1950-2010.
Professor Kathryn Linn Geurts has been teaching at Hamline University in Saint Paul, Minnesota, since 2002. Her anthropological research focuses on investigating bodily experience – not through a Western lens but through a West African perspective. Her monograph Culture and the Senses: Bodily Ways of Knowing in an African Community concerns the cultural construction of sensory orientations among Ewe-speaking people in Ghana. At Hamline University she teaches a range of courses that engage the burgeoning scholarship about bodily and sensory experience and the socio-political effects of a physicalist bias in global culture.
This series will interrogate the theoretical tools and approaches that scholars bring to the study of disability in the social sciences. Scholars have recently turned a focused attention on different states of bodily and sensorial experience; we aim to connect these concerns with questions about how people experiencing such differences create inhabitable worlds. In doing so, we draw inspiration from Martin Heidegger’s provocative neologism “worlding.” Building on Heidegger, Mei Zhan states that worlds are “emergent socialities entangled in dynamic imaginaries of pasts, futures, and presents” and that they are constantly being made and remade (Zhan 2009, 6). We see “inhabitable worlds” as both analytic and material worlds, worlds that have existed, that do exist, and that will exist. And perhaps most importantly, we see inhabitable worlds as worlds that people themselves inhabit and aspire towards.
In approaching bodies and senses through the lens of inhabitable worlds, we aim to further inquire into age-old scholarly investigations about embodiment to think through a current fascination with the senses and to trouble social categories such as “disability,” “debility,” and “ability.” Grappling with narratives about bodily function and the senses, we propose a series where scholars go beyond the binaries of ability and disability, and capacity and incapacity, to understand the body and senses as being volatile, unstable, and in flux. This series focuses on inhabitable worlds both as an alternative to and a mode to think through medical concepts of rehabilitation and habilitation. Medical discourses shape the ways people come to experience bodily difference; people also transform these discourses through political advocacy and personal tactics they develop to navigate the material realities of bodily differences and built environments .
While rehabilitation suggests some sort of return to a prior state and habilitation suggests a lack to be remedied by gain, the concept of “inhabitable worlds” moves us away from such teleologies. In contrast, we are most interested in understanding people’s everyday practices and the tactics that they use to make sense and meaning in and of their worlds. Rather than a possession model of having legs, having hearing, having abilities or not, we are asking contributors to think through action – theories of habit, intention, movement, and stasis through space and time. Contributors to this series range from anthropologists to disability studies scholars to communication scholars to performing artists. Our goal is to explore the diversity of thinking about bodily and sensory differences and to examine how people create and dwell in inhabitable worlds.
At the same time, contributors to this series are also mindful of broader context. How do disability worlds (Rapp and Ginsburg 2013) exist in relation to other kinds of social, political, and economic worlds? How do disability worlds articulate with and remake these other worlds? On the one hand, we want to be mindful of how disabled peoples’ lives are being rendered increasingly marginal and precarious by neoliberal political economic practices and policies. On the other hand, we also want to think about the ways that disability as a category is a privileged site for development interventions and corporate initiatives. As such, contributors attend to the ways that the marginal is also central and how both disability experiences and the category of disability have become norms in and of themselves.
The political and economic dimensions of inhabitable worlds are intersected with gender, race, class, ethnicity, and nationality. Disability as a relational and intersectional category is generative – it helps produce identity politics, advocacy, and (alternative) public spheres. Disability has also been mobilized in ways that reproduce social hierarchies – masculine narratives of overcoming difficulty (or possessing super abilities) through sports or elite forms of representation that deny other axes of difference. Through various ways, contributors help dismantle disparities through a (re)imagining of disability within “inhabitable worlds” – one that is relational, recognizes bodily limits, and acknowledges interdepencies between people. In other words, inhabitable worlds are undeniably social and grounded in everyday life.
Editor’s note: New entries in this series will be published each Monday.
Book Forum—Lisa Stevenson’s “Life Beside Itself: Imagining Care in the Canadian Arctic” by Eugene Raikhel
For our latest installment in the book forum series, we bring you a series of commentaries on Lisa Stevenson’s Life Beside Itself: Imagining Care in the Canadian Arctic (University of California Press, 2014). As it takes us across the conceptual grounds of governance, (post)colonialism, biopolitics, violence, and suicide, this book illuminates care as an object of study in a way that points to the remarkable care of Lisa Stevenson’s ethnography and writing. We hope that you enjoy these engagements with the book, as well as Lisa Stevenson’s reply.
Comments on Lisa Stevenson’s Life Beside Itself: Imagining Care in the Canadian Arctic (University of California Press, 2014):
“The terror of being on the wrong side of the (bio)politics of life”
Response to comments:
Here is the first installment of our coverage of April journal articles. Enjoy!
Changes to the global food supply have been characterized by greater availability of edible oils, sweeteners, and meats – a profound ‘nutrition transition’ associated with rising obesity, type 2 diabetes, and cardiovascular disease. Through an analysis of three longitudinal databases of food supply, sales, and economics across the period 1961–2010, we observed that the change in global food supply has been characterized by a dramatic rise in pig meat consumption in China and poultry consumption in North America. These changes have not been experienced by all rapidly developing countries, and are not well explained by changes in income. The changes in food supply include divergence among otherwise similar neighboring countries, suggesting that the changes in food supply are not an inevitable result of economic development. Furthermore, we observed that the nutrition transition does not merely involve an adoption of ‘Western’ diets universally, but can also include an increase in the supply of edible oils that are uncommon in Western countries. Much of the increase in sales of sugar-sweetened beverages and packaged foods is attributable to a handful of multinational corporations, but typically from products distributed through domestic production systems rather than foreign importation. While North America and Latin America continued to have high sugar-sweetened beverage and packaged food sales in recent years, Eastern Europe and the Middle East have become emerging markets for these products. These findings suggest further study of natural experiments to identify which policies may mitigate nutritional risk factors for chronic disease in the context of economic development.
Path-breaking scholarship has described how corporate control of food production and distribution is implicated in the global emergence of diets heavy in fats, meats and sugars. The ‘multinational food and beverage companies with huge and concentrated market power’ can be thought of as Big Food. Big Food’s presence in Kenya has expanded, and organizations have expressed concerns about the number of Kenyans who are obese. Despite these concerns, Kenya’s dietary profile does not show a clear picture of high fats, meats and sugars. This suggests that the structural factors that shape the organization of Kenya’s food supply need to be examined. By looking to the food regime approach, it is possible to understand how dietary patterns are a ‘reconstitution of material culture’, as trade arrangements shape diets in ways that make some foods seem traditional, while others appear to be new or exotic. By using the food regime approach, it is possible to understand how Kenya’s position in international trade influences food production and consumption, as well as how the Kenyan state has played a role in mitigating the Big Food diet. In this respect, the policies and practices that organize Kenyan diets are reflective of global-historical arrangements, but are also particular to Kenya. I base my argument on ethnographic research conducted in 2010 and 2014 in urban and rural areas, interviews, FAOSTAT statistics, scholarship, government documents, agency reports, newspapers and relevant food websites.
Big Soda’s Long Shadow: News Coverage of Local Proposals to Tax Sugar-Sweetened Beverages in Richmond, El Monte and Telluride
Laura Nixon, Pamela Mejia, Andrew Cheyne, and Lori Dorfman
In 2012 and 2013, Richmond and El Monte, CA, and Telluride, CO, became the first communities in the country to vote on citywide sugary drink taxes. In the face of massive spending from the soda industry, all three proposals failed at the ballot box, but the vigorous public debates they inspired provide valuable insights for future policy efforts. We analyzed local and national news coverage of the three proposals and found that pro-tax arguments appeared most frequently in the news. Advocates for the taxes focused primarily on the potential community health benefits the taxes could produce and the health harms caused by sodas. Tax opponents capitalized on the existing political tensions in each community, including racial and ethnic divisions in Richmond, anti-government attitudes in El Monte, and a culture of individualism in Telluride. Pro-tax arguments came mainly from city officials and public health advocates, while anti-tax forces recruited a wide range of people to speak against the tax. The soda industry itself was conspicuously absent from news coverage. Instead, in each community, the industry funded anti-tax coalition groups, whose affiliation with industry was often not acknowledged in the news. Our analysis of this coverage exposes how soda tax opponents used strategies established by the tobacco industry to fight regulation. Despite these defeats, tax advocates can take inspiration from more mature public health campaigns, which indicate that such policies may take many years to gain traction.
The promise of ‘fun’ is an increasingly common strategy used by Big Food in the promotion of packaged products. Gamification, or ‘making it fun’, has been identified as a top consumer packaged goods trend for 2014, and is finding its way into the spectrum of packaged goods and target markets. Once solely the preserve of children’s fare, fun is now applied to ‘junk’ food, ‘healthy’ food, snack food, ‘adult’ food, and ‘kids’ food. The rise and implications of such marketing has yet to be explored, and this article draws from the critical literature in food studies, current food marketing campaigns, and primary research from the trade press to map and critique ‘fun’ in association with food promotion. I argue that the promise of fun – while positioned as a playful, edible ‘pause’ in a hectic world – works to occlude some significant health, attitudinal and policy considerations related to the industrial diet. The seemingly lightweight focus on fun as a driver in food promotion promises a more embodied level of engagement than does a focus on nutritionism. However, ‘fun’ can simultaneously work to reconfigure relationships with food, increase consumption, and distance processed foodstuffs from issues of nutrients, as well as the non-communicable diseases associated with excessive consumption of highly processed fare.
This commentary sketches out the politics of the expansion of affordable, fast-moving nutraceutical products into rural India, with a focus on fortified foods and beverages. It examines the relationships between industry, government and humanitarian organisations that are being forged alongside the development of markets for nutraceuticals; the production of evidence and the harnessing of science to support nutraceutical companies’ claims; the ways in which nutraceuticals are being marketed and distributed in rural areas; and the concepts of health and well-being that are being promulgated through those marketing campaigns. Lastly, it asks what kinds of impact fast-moving nutraceuticals are likely to have on the lives of India’s rural poor. It concludes by questioning how smooth a transition to nutraceutical consumption Big Food marketing strategies can really facilitate and how readily low-income families seeking to feed their families and safeguard health will actually adopt concepts of wellness and internalise micro-nutrient associated risks.
Are Natural Resources Bad for Health?
Amany A. El Anshasy and Marina-Selini Katsaiti
The purpose of this paper is to empirically examine whether economic dependence on various natural resources is associated with lower investment in health, after controlling for countries׳ geographical and historical fixed effects, corruption, autocratic regimes, income levels, and initial health status. Employing panel data for 118 countries for the period 1990–2008, we find no compelling evidence in support of a negative effect of resources on healthcare spending and outcomes. On the contrary, higher dependence on agricultural exports is associated with higher healthcare spending, higher life expectancy, and lower diabetes rates. Similarly, healthcare spending increases with higher mineral intensity. Finally, more hydrocarbon resource rents are associated with less diabetes and obesity rates. There is however evidence that public health provision relative to the size of the economy declines with greater hydrocarbon resource-intensity; the magnitude of this effect is less severe in non-democratic countries.
Regeneration, Relocation and Health Behaviours in Deprived Communities
Ade Kearns and Phil Mason
In the UK, recent regeneration programmes have aimed to improve the health of those who remain in their neighbourhood (Remainers) and those who are relocated (Outmovers); thus, as part of the 10-year GoWell study (2006–2015) of the effects of demolition, rebuilding and housing improvements on residents and communities, we examined associations of health behaviours with residential conditions and location status in deprived neighbourhoods of Glasgow. Better internal dwelling conditions were associated with several better health behaviours; in relation to neighbourhood conditions, the results were more mixed. Outmovers often exhibited worse health behaviours than Remainers, perhaps because environmental and social conditions were little altered by relocation, and because personal support mechanisms were missing. Health behaviours were relatively good among Remainers, indicating that in situ changes might stimulate life-changing improvements, but relocation less so.
This research uses the National Longitudinal Study of Adult Health׳s Obesity and Neighborhood Environment (ONE) to examine the relationship between residential instability and change in obesity in the United States. Mobility is thought to be related to obesity because it conditions what kinds of amenities are present in the areas where people live and what level of motivation individuals have to take advantage of these amenities. Thus, this research uses spatial measures as potential confounders for the mobility–health relationship. Results suggest that mobility is a protective factor against weight gain over time. However, the effect of mobility is completely explained by the environmental characteristics. After adjusting for changes in physical activity resources and the crime rate, adolescents who move and adolescents who do not move have precisely the same risk of being obese. Mobility is thus a function of the change in environmental characteristics. Implications for developing the built environment are discussed.
‘Where They (Live, Work and) Spray': Pesticide Exposure, Childhood Asthma and Environmental Justice Among Mexican-American Farmworkers
Norah Anita Schwartz, Christine Alysse von Glascoe, Victor Torres, Lorena Ramos, Claudia Soria-Delgado
Asthma prevalence is reportedly low for children of Mexican descent compared with other ethnic groups and Latino subgroups. The results of our exploratory ethnographic research among children of farmworkers in California dramatically suggest otherwise. Unstructured and semi-structured open-ended interviews and photovoice methods were combined to explore the lived experiences of members of a marginalized farmworker community. This research gives voice to a population of families living in the highly toxic, yet agriculturally wealthy environment of the San Joaquin Valley. Little work has been reported employing photovoice, a community-based participatory research method, to study childhood exposure to pesticides. A rich narrative about perceptions of pesticide exposure emerged from the ethnographic interviews. Thematic analysis yielded beliefs about the relationship between air quality and childhood asthma. The findings suggest that childhood asthma should be reviewed within the context of local levels of environmental exposure and the principles of environmental justice.
Change in Neighborhood Environments and Depressive Symptoms in New York City: The Multi-Ethnic Study of Atherosclerosis
C. Mair, A.V. Diez Roux, S.H. Golden, S. Rapp, T. Seeman, S. Shea
Physical and social features of neighborhoods, such as esthetic environments and social cohesion, change over time. The extent to which changes in neighborhood conditions are associated with changes in mental health outcomes has not been well-established. Using data from the MultiEthnic Study of Atherosclerosis, this study investigated the degree to which neighborhood social cohesion, stress, violence, safety and/or the esthetic environment changed between 2002 and 2007 in 103 New York City Census tracts and the associations of these changes with changes in depressive symptoms. Neighborhoods became less stressful, more socially cohesive, safer, and less violent. White, wealthy, highly educated individuals tended to live in neighborhoods with greater decreasing violence and stress and increasing social cohesion. Individuals living in neighborhoods with adverse changes were more likely to have increased CES-D scores, although due to limited sample size associations were imprecisely estimated (P>0.05). Changes in specific features of the neighborhood environment may be associated with changes in level of depressive symptoms among residents.
Risk and the Black American Child: Representations of Children’s Mental Health Issues in Three Popular African American Magazines
Juanne N. Clarke and Donya Mosley
Risks abound with the increasing diseasing of childhood in North America. However, the incidence and meanings and therefore the risk of children’s mental health issues differ in distinctly racialised groups. In this article, we examine the portrayal of the risk of children’s mental health issues in articles published in the three highest circulating African American magazines (Jet, Ebony and Essence) from 1990 to 2012. Based on a qualitative content analysis, we document how the representations of risks of children’s mental health issues are inextricably bound up with racism, inequity and oppression. It is these social conditions that are represented as constituting the chief risk factors for a range of behavioural and emotional difficulties in the lives of Black children. This representation contrasts sharply with that of children’s mental health issues in mainstream magazines during the same time period. It does not reflect their dominant neoliberal or individualising understanding of risk nor the possibilities of raising ‘successful children’ through actively parenting within discourses of medicalisation. We discuss the theoretical explanations and pragmatic consequences of the contrasting risk representation in the select magazines.
Growing Better Brains? Pregnancy and Neuroscience Discourses in English Social and Welfare Policies
Pam Lowe, Ellie Lee, and Jan Macvarish
In recent years, English welfare and health policy has started to include pregnancy within the foundation stage of child development. The foetus is also increasingly designated as ‘at risk’ from pregnant women. In this article, we draw on an analysis of a purposive sample of English social and welfare policies and closely related advocacy documents to trace the emergence of neuroscientific claims-making in relation to the family. In this article, we show that a specific deterministic understanding of the developing brain that only has a loose relationship with current scientific evidence is an important component in these changes. We examine the ways in which pregnancy is situated in these debates. In these debates, maternal stress is identified as a risk to the foetus; however, the selective concern with women living in disadvantage undermines biological claims. The policy claim of neurological ‘critical windows’ also seems to be influenced by social concerns. Hence, these emerging concerns over the foetus’ developing brain seem to be situated within the gendered history of policing women’s pregnant bodies rather than acting on new insights from scientific discoveries. By situating these developments within the broader framework of risk consciousness, we can link these changes to wider understandings of the ‘at risk’ child and intensified surveillance over family life.
Liquid Gold or Russian Roulette? Risk and Human Milk Sharing in the U.S. News Media
Shannon K. Carter, Beatriz Reyes-Foster, and Tiffany L. Rogers
The exchange of human breast milk, a common and well-established practice, has become a site of public controversy in the US. There is controversy over the use of the internet to facilitate milk exchange and public interest in the practice has been stimulated by a research article published in the journal Pediatrics that identified high levels of potentially harmful bacteria in breast milk sold online. In this article we use feminist critical discourse analysis to critically examine how breast milk sharing is represented in a sample of 30 articles from US print newspapers published in 2010–2013. We found complex and contradictory images of human milk, with medically supervised milk banks represented as a life-saving entity, nature’s ‘liquid gold’, whereas peer sharing of breast milk was represented as dangerous, and in this context breast milk was represented as a potentially life-threatening substance. Women who donated milk to milk banks were represented as altruistic and those who obtained their babies’ milk from the milk bank were represented as responsible and acting in the best interests of their babies. In contrast women who participated in peer milk sharing were represented at best as ill-informed about the risks to babies and at worst, morally reprehensible for disregarding the risks. Mothers who fed their babies this milk were represented as irresponsible and playing ‘Russian roulette’ with their babies. We argue that such contradictory representations are grounded in concerns in high income countries such as the USA with the control and surveillance of the female body through discourses of risk and are based on cultural constructions of individualism and intensive mothering.
Risk: ‘I Know It When I See It': How Health and Social Practitioners Defined and Evaluated Living at Risk Among Community-Dwelling Older Adults
Heather MacLeod and Robin L. Stadnyk
Older adults are increasingly choosing to stay and age in their home or other place where they normally live, even when a change in their health reduces their ability to live independently creating concerns about their safety. In this context, community practitioners need to be aware of risk assessment and management strategies as they support their clients’ choices when safety is a concern. This requires an understanding of living at risk and an ability to evaluate the client’s risk status. This article is based on a qualitative research study in which we interviewed 12 Canadian community practitioners in 2012 and explored how they defined, perceived, assessed and managed risk and how they balanced their client’s safety and autonomy. We used a grounded theory methodology to collect and analyse the data. We found that participants tended to define living at risk as a judgement about a client’s impairment within an environment that can cause an event that has an increased potential for a negative consequence. We also found practitioners evaluated the client’s risk by considering seven factors: the client’s capacity and their support, the occurrence, imminency and frequency of the event, the severity of the consequences, and the number of other events co-occurring. In this article, we show that practitioners are comprehensive in their evaluation of the client’s risk. Although practitioners saw risk and living at risk from a negative perspective, they were able to acknowledge that it could coexist along a continuum from safe to unsafe.
Enmeshed in Controversy: Claims About the Risks of Vaginal Mesh Devices
Valerie Leiter and Shelley K. White
Urinary incontinence is a hidden, private issue that affects over 40% of women. Its experience has been medicalised, mainly through urogynaecological surgery, more recently using implanted synthetic vaginal mesh. In this article, we analyse the power dynamics at play in the US Food and Drug Administration’s public hearings on the regulation of mesh. We use grounded theory to analyse verbatim transcripts of two days’ hearings in 2011 of a Food and Drug Administration medical devices advisory panel regarding the risks and benefits of the mesh. Applying the concept of language games to the transcripts, we found that mesh manufacturers and physicians expanded perceptions of the locations of risk, thereby diffusing responsibility for mesh-associated claims of adverse effects. This resulted in ‘organised irresponsibility’ where accountability for the risks reported by patients was deflected away from the mesh to other issues such as inadequacies of surgeons’ training. Patients in turn questioned the Food and Drug Administration’s regulation of mesh safety. In this article, we reflect on the ways in which medical device regulation may become more pressing and contested in the future.
Framing and Reframing Critical Incidents in Hospitals
Lonneke Behr, Kor Grit, Roland Bal, and Paul Robben
In healthcare systems in high-income countries, critical incidents are increasingly seen as an important indicator of the quality of care. Based on the rationale that there are important lessons to be learnt from mistakes and that insights into critical incidents will help to prevent them from happening again, there is a widespread assumption that conducting inquiries will contribute to improvements in patient safety. In this article, we draw on data from a qualitative comparative case study of three critical incidents in Dutch hospitals in the last decade to examine the ways in which critical incidents are investigated. Through a detailed analysis of the inquiry documentation, we identified four key elements in the inquiry process: how risks were framed and perceived, the type of methods the inquiries used to examine critical incidents, the ways in which inquiries allocated blame and the ways in which they sought to maintain transparency. Drawing on Schön and Rein’s work on framing theory, in this article we examined how the key participants in the inquiries framed issues so that they could undertake their work. We found that inquiries are complex processes in which inquiry teams can and do use different frames for deciding who should be involved in the inquiry, what should be discussed, how this should be done and to whom findings of the inquiry should be disclosed. We found that inquiries used professional, managerial or governance frames and sometimes elements of two or more frames coexisted. Within these frames, risk was framed in different ways, leading to different types of actions, involving different groups of actors.
Diabetes and ‘Defective’ Genes in the Twentieth-Century United States
Arlene Marcia Tuchman
In the decades following the discovery of insulin, eugenicists grew concerned that more diabetics would survive into their reproductive years and contribute “defective” genes to the gene pool. Insulin thus came to be seen as both a blessing for the individual and a problem for the future of humankind. Nevertheless, diabetics in the United States were neither prevented nor discouraged from reproducing. I argue that this stemmed from the widespread belief that diabetes was a disease primarily of middle-class whites, who possessed positive traits that outweighed their particular genetic defect. Historians of eugenics have demonstrated convincingly that race and class stereotypes made some populations more vulnerable to coercive eugenic practices. The case of diabetes demonstrates that race and class stereotypes could also confer protection. In the end, possession of a defective gene mattered less than the perception of one’s contribution to society.
Justice at the Margins: Witches, Prisoners, and Social Accountability in Norther Uganda
Tim Allen and Kyla Reid
Recent responses to people alleged to be ‘witches’ or ‘poisoners’ among the Madi of northern Uganda are compared with those of the 1980s. The extreme violence of past incidents is set in the context of contemporary upheavals and, in effect, encouragement from Catholic and governmental attitudes and initiatives. Mob justice has subsequently become less common. From 2006, a democratic system for dealing with suspects was introduced, whereby those receiving the highest number of votes are expelled from the neighborhood or punished in other ways. These developments are assessed with reference to trends in supporting ‘traditional’ approaches to social accountability and social healing as alternatives to more conventional measures. Caution is required. Locally acceptable hybrid systems may emerge, but when things turn nasty, it is usually the weak and vulnerable that suffer.
Various forms of silence are understood to characterize the response to HIV/AIDS in the Lihir Islands in Papua New Guinea. While some efforts have been made to prevent HIV and educate residents, these seem not to have been in proportion to its classification as a high-risk setting for transmission, given social factors associated with the Lihir gold mine. Confidentiality is both practiced yet critiqued in Lihir as another form of silencing that detracts from efforts to emphasize the serious nature of HIV, promote its prevention, and care for those who live with it. ‘Breaking the silence’ has come to be seen as key to preventing HIV in Lihir, yet while certain silences are acknowledged, others have escaped scrutiny.
Securitarian Healing: Roma Mobility and Health Care in Rome
Over the last decade, Roma populations in Europe have been the object of strict securitarian policies. The Rome case is particularly interesting due to the continued shift from securitarian to humanitarian discourses and actions led by local institutions. The specific health care system implemented in the legal and illegal Roma camps was one of the tools used. The ethnographic fieldwork behind this article involved following the daily activities of a mobile medical unit dedicated to Roma camps in Rome and monitoring a health care project led by a nongovernmental organization. This analysis focuses on one particular dimension of precarious forms of Roma citizenship that the health care policies have developed to address Roma issues: the international mobility dynamics relating to health issues, which drive subjects into a forced integration of multiple, incomplete, and fragmentary medical approaches.
Narrating Narcolepsy – Centering a Side Effect
The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009–2010, and covered 60% of the population. From 2010, an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for more than 200 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath—using dark humor, cognitive tricks, and making themselves and their children’s bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work, and the potential for reflective consciousness, is discussed.
Based on nearly two years of ethnographic research with farmworkers in California’s Pájaro Valley, in this article I build on Olson’s idea of “extreme environments.” By merging theories of biopolitics and political ecology, or ecobiopolitics, I explore the naturalization of chemically intensive systems of agricultural production and the health consequences they produce for farmworkers. State and industry regimes of agricultural knowledge and practice are designed to control workers and the environment in strawberry fields. They also produce devastating syndemics and chronicities of disease in farmworker bodies and communities. The relationships between health disparities and farmworkers’ lifetimes of exposure to toxic pesticides remain underexplored and poorly understood, perpetuating toxic ignorance about the relationships between pesticides and farmworker health. This enables equating worker well-being with industry well-being. Synergies between ethnographic and environmental health research are needed to challenge toxic ignorance, toxic layering, and the invisible harms they produce in agricultural communities.
Rethinking the Relationship Between Stress and Resilience
Qualitative Cancer Research: Taking Stock, Stepping Further
Susanne Brandner, Yvonne Adam, Sarah Blakeslee, Denny Chakkalalal, Christine Holmberg, Jennifer Kennedy, Martin Schultze, and Weibke Stritter
This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer. Methods Research took several forms beginning with a review of books and articles written by ethicists and observers of Bön, Buddhism, Christianity, Hinduism, Indigenous Traditions, Islam, Judaism, Shinto and Taoism. It then examined sources to which these authors referred in footnotes and bibliographies. In addition, material was gathered through searches of data bases in religious studies, general humanities, social sciences and medicine along with web-based key word searches for current policies in various traditions. Results Religious traditions provide their adherents with explanations for the meaning and purpose of life and include ethical analysis for the situations in which their followers find themselves. This paper aims to increase cultural competency in practitioners by demonstrating the reasoning process religions use to determine what they believe to be the correct decision in the face of death. Conclusion Patterns emerge in the comparative study of religious perspectives on death. Western traditions show their rootedness in Judaism in their understanding of the human individual as a finite, singular creation. Although the many branches of Western religions do not agree on precisely how to determine death, they are all able to locate a moment of death in the body. In Eastern traditions personhood is not defined in physical terms. From prescribing the location of death, to resisting medical intervention and definitions of death, Eastern religions, in their many forms, incorporate the beliefs and practices that preceded them. Adding to the complexity for these traditions is the idea that death is a process that continues after the body has met most empirical criteria for determining death. For Hinduism and Buddhism, the cessation of heart, brain and lung function is the beginning of the process of dying—not the end.
Explaining and Responding to the Ebola Epidemic
The Ebola epidemic in West Africa is not merely a biomedical problem that can be seen in isolation and dealt with only through emergency medical rescue processes. The ethical dilemmas surfaced by this epidemic are also not confined to the usual micro-ethical problems associated with medical care and medical research. The pandemic, as one of many manifestations of failed human and social development that has brought the world to dangerous ‘tipping points’, requires deep introspection and action to address upstream causal processes.
Neuroscientific research on the removal of unpleasant and traumatic memories is still at a very early stage, but is making rapid progress and has stirred a significant philosophical and neuroethical debate. Even if memory is considered to be a fundamental element of personal identity, in the context of memory-erasing the autonomy of decision-making seems prevailing. However, there seem to be situations where the overall context in which people might choose to intervene on their memories would lead to view those actions as counterproductive. In this article, I outline situations where the so-called composition effects can produce negative results for everyone involved, even if the individual decisions are not as such negative. In such situations medical treatments that usually everyone should be free to take, following the principle of autonomy, can make it so that the personal autonomy of the individuals in the group considered is damaged or even destroyed. In these specific cases, in which what is called the “conformity to context” prevails, the moral admissibility of procedures of memory-erasing is called into question and the principle of personal autonomy turns out to be subordinate to social interests benefitting every member of the group.
A Four-Part Working Bibliography of Neurotics: Part 2 – Neuroscientific Studies of Morality and Ethics
Martina Darragh, Liana Buniak, and James Giordano
Moral philosophy and psychology have sought to define the nature of right and wrong, and good and evil. The industrial turn of the twentieth century fostered increasingly technological approaches that conjoined philosophy to psychology, and psychology to the natural sciences. Thus, moral philosophy and psychology became ever more vested to investigations of the anatomic structures and physiologic processes involved in cognition, emotion and behavior – ultimately falling under the rubric of the neurosciences. Since 2002, neuroscientific studies of moral thought, emotions and behaviors have become known as – and a part of – the relatively new discipline of neuroethics. Herein we present Part 2 of a bibliography of neuroethics from 2002–2013 addressing the “neuroscience of ethics” – studies of putative neural substrates and mechanisms involved in cognitive, emotional and behavioral processes of morality and ethics.
The Right to Health, Health Systems Development, and Public Health Policy Challenges in Chad
Jacquineau Azétsop and Michael Ochieng
There is increasing consensus that the right to health can provide ethical, policy and practical groundings for health systems development. The goals of the right to health are congruent with those of health systems development, which are about strengthening health promotion organizations and actions so as to improve public health. The poor shape and performance of health systems in Chad question the extent of realization of the right to health. Due to its comprehensiveness and inclusiveness, the right to health has the potential of being an organizational and a normative backbone for public health policy and practice. It can then be understood and studied as an integral component of health systems development.
The Ethics of Animal Research: A Survey of Pediatric Health Care Workers
Ari R. Joffe, Meredith Bara, Natalie Anton, and Nathan Nobis
Pediatric health care workers (HCW) often perform, promote, and advocate use of public funds for animal research (AR). We aim to determine whether HCW consider common arguments (and counterarguments) in support (or not) of AR convincing.
Nicolas Langlitz’s Neuropsychedelia: The Revival of Hallucinogen Research Since the Decade of the Brain by Meg Stalcup
University of California Press, 2012, 336 pages.
Humphry Osmond wrote to Aldous Huxley in 1956 proposing the term “psychedelic,” coined from two Greek words to mean “mind manifesting.” The scholars, one a psychiatrist and the other a celebrated novelist and philosopher, were exuberant about the potential of drugs for accessing the mind. Huxley favored a phrase from William Blake:
If the doors of perception were cleansed everything would appear to man as it is, infinite.
He postulated that psychedelics disturbed the “cerebral reducing valve” (1954), and that this was in fact the shared mechanism for regular drug trips, as well as schizophrenic and mystical experiences. If it were the case, the drugs could offer a chemical shortcut to the divine, and a reasonable way to scientifically study mental illness.
With such ideas in vogue, the 1950s were heady years, at least for research on psychedelic drugs. More than 750 articles were published on LSD alone. Some studies made use of the drug experience to model schizophrenia, others to develop treatments for alcoholism. And as Nicolas Langlitz explains in Neuropsychedelia: The Revival of Hallucinogen Research Since the Decade of the Brain, the brain as filter – the idea of gates or doors (which, yes, also gave name to the band) – would go on to serve as a significant shared conceptual matrix for psychopharmacologic research, from experimental psychosis to experimental mysticism (10).
Yet, despite great interest in the potential of psychedelics for treating mental disorders, and even hopes for their application to social ills, research in the United States on these drugs broke down in the 1960s as they became associated with the hippie counterculture. One point that Langlitz makes is that this was not a simple matter of government prohibition. Technically, scientists can request highly restricted substances for research, but when it came to psychedelics, they refrained. Inquiry, as Langlitz describes it, was repressed more by the micro politics of ethics committees, government funding, and peer censure than by law. He suggests that the same attention to human actors is required for understanding hallucinogens’ return to grace – for there are all the signs that they have returned, including a crowd-funding campaign for brain-imaging studies with LSD, proclamations from the Chronicle of Higher Education, and a full-length feature on the therapeutic use of psilocybin in The New Yorker.
Neuropsychedelia operates on several levels. The book is a historical account of research on psychedelics, and on that score contributes with original material from interviews with those who played central roles. Equally, it is an ethnographic account of laboratories where this work is being done: the practices of neuroscience, and what science as a vocation, fulfilled or frustrated, looks like today. Finally, it embodies an undertaking of fieldwork in philosophy, and, as the result of this exploration of the long tradition of philosophia perennis, a proposal for an anthropology of the perennial.
Chapters 1 and 2 cover the rise, fall, and revival of academic research on hallucinogenic drugs in the United States and Switzerland, respectively. Two strategies dominated these trajectories: a depoliticization of drug research through a rigorous focus on its scientific merits (which was, as Langlitz notes, itself a political maneuver), and explicitly political efforts to medicalize hallucinogens for psychotherapeutic uses (45). Both chapters draw from invaluable oral histories that Langlitz collected, so that even though the bulk of basic facts about the U.S. counterculture and drugs is readily available in popular media accounts and other books, the material represents a unique resource. Focusing on the pivotal role of Switzerland in the revival, Chapter 2 offers a firsthand anthropology of policy through the adroit interweaving of social history, international and domestic politics and economics, and the words of a bureaucrat and a scientist who enacted research on hallucinogens when experimentation was almost entirely underground in the United States.
Chapters 3 and 4 present Langlitz’s fieldwork in Zurich, describing the lives and motivations of the psychedelic test subjects and researchers from a neuroscience lab where he too participated. The experiments were designed to address the existential questions that drive the researchers: questions about mind and brain, subjective reality, and inner truth. They also raise questions about scientific objectivity and subjectivity, which Langlitz takes up in relation to the work of Lorraine Daston and Peter Galison, among others. He elegantly delves into what he labels the non-representational “enactive model” of psychosis, which aims not at a “naturalistic depiction of schizophrenia but at a comparative investigation of drug intoxication and mental disorder as two distinct states situated on the same ontological level” (22).
Chapter 5 shifts to a San Diego neuroscience lab, multi-species ethnography and the ethics of human-animal relations, as hallucinogens are given to lab mice in order to modulate their startle reflex. From the thick of his engagement with researchers and their work with lab animals, Langlitz analyzes how animal models have come to challenge ontological dualism. While the startle reflex is about as basic a physiological behavior as can be tested, the scientists acknowledge that it is hard to be sure that the behavior being measured is the same across species boundaries. But the differences are those of dose and physiology, rather than incommensurable human and animal minds. Drawing on Philippe Descola’s discussion of a dualist naturalism, Langlitz writes that the lab work is premised on a distinctive conception of shared biological nature, a molecularized, animal-human life in which “immanent transcendence has taken the place of the sacred” (202). Thus from a seeming limit case of the disenchantment of psychedelic drugs and inner realms comes a curious form of spirituality, a monist ontology which he names “mystic materialism.”
Langlitz pursues this emergent biomysticism in Chapter 6 as well as the Conclusion. In writing about the forms of life the researchers aspire to, reflect on, and create, particularly in these last two chapters Langlitz includes himself. This goes beyond the autoethnography of his participation in psilocybin experiments: part of the significance of Chapter 3’s analysis of the epistemic virtues and norms of objectivity is that in this Bildungsroman there can be no external position, nor is there a state of illusion that the social scientist reveals. From an early experience of drug-induced loss of self and subsequent euphoric reintegration grew a frustration with precisely such impasses between science and spirituality. In the neuropsychedelic researchers, he seeks and finds a tribe of those who, like himself, do not oppose science to spirituality but instead ask existential questions through science, be it neuroscience or anthropology.
They are “‘live questions,’ as William James would have called them—regarding the truth-value of subjective experience and the reconcilability of spirituality and materialism in a disenchanted world” (243-244). At the heart of the book is Langlitz’s yearning to give proper due to this human search for meaning. He documents the responses of his interlocutors in order to find his own. It’s not clear that he accepts mystic materialism as an answer (nor do all or even most of them), but that does not lessen the significance of its appearance and implications.
In ways that vary from researcher to researcher, “religious conceptions meet cutting-edge neuropsychopharmacology to generate a moral economy of hope” (17). That this is not wholly new is exactly the point. “The interesting anthropological question,” Langlitz writes, “is how archaic and more or less universal elements enter into new polytemporal ensembles” (251):
the extraordinary universality of the genetic code—or, to a lesser but still significant degree, of neurochemicals such as serotonin, or arguably of religious beliefs—is neither trivial nor so ill-founded as to be automatically shrugged off.
Part of what Langlitz prods at is anthropology’s tendency to shy away from philosophical questions as timeless and universal. He is well aware of the sociohistorical specificity of neurochemical selves and their existential quandaries; he identifies it as his own. The distinctiveness of a contemporary form, however, does not therefore mean that it is entirely singular.
Paul Rabinow adapted the phrase “fieldwork in philosophy” (from Pierre Bourdieu, who had acquired it from John Austin) to name an anthropology that intends to see and say something true about the process of emergence of forms (2003: 85). Inquiry in this mode entails “[a] sensibility of constant change, and a certain pleasure and obligation to grasp it and participate in the transformation” (1999: 181). An example is Rabinow’s own fieldwork on the development of the knowledge-thing that is DNA.
To a sensibility to constant change, Langlitz adds “a perennialist sensibility of the eternal return of the same.” In his fieldwork he found certain “eternal verities,” constants in the sense of constant variables, of a universality which cannot be presupposed but has to be freshly achieved time after time (251).
Langlitz’s proposal for an anthropology of the perennial draws, like mystic materialism itself, on perennial philosophy as eclectically recalibrated by Huxley (from Leibniz’s philosophia perennis, who drew on the Catholic theologian Agostino Steuco, and he from others). This is not a “perennial anthropology” of transhistorical truths or the epochal new monism that haunts the ontological turn. Rather, the attention to material and social context that Langlitz insists is necessary to understanding the rise, fall and renaissance of psychedelic research is also crucial to his anthropology of the perennial, lest we “gnaw on seemingly eternal problems without understanding where they have come from” (253).
Beyond its pleasures for those who care for original history or about psychedelics themselves, or whose intellectual interests intersect with any of the book’s explorations (which range far beyond those highlighted here), Neuropsychedelia is an elegant exemplar of both science studies and anthropology of the contemporary. I taught the book in a graduate seminar on research methods, for its lucid depiction of what it can look like to identify questions meaningful to oneself, and set about studying them anthropologically. Methodological terms which can seem like mere buzzwords are in it richly realized: multi-sited ethnography is conducted through participant-observation and semi-structured interviews about a global, yet locally differentiated assemblage, shaped by historical factors, clarified through concept work and, finally, reflexivity about the process at hand.
This last bit is worth emphasizing, as in Neuropsychedelia, reflexivity is not directed toward identifying the limits or power of ethnographic authority. Langlitz affirms an anthropology that affects the process of emergence of those objects under study, and also the anthropologist, while proposing a set of distinct interventions into that process. In short, the book’s empirical inquiry is coupled with an effort to develop tools adequate to the problems encountered, including care of the self, and the cultivation of a form of life in which one might undertake fieldwork in perennial philosophy.
Meg Stalcup is assistant professor of anthropology at the University of Ottawa.
Huxley, Aldous. 1954. The Doors of Perception and Heaven and Hell. New York: HarperCollins.
Rabinow, Paul. 1999. French DNA: Trouble in Purgatory. Chicago: University of Chicago Press.
———. 2003. Anthropos Today: Reflections on Modern Equipment. Princeton (NJ): Princeton University Press.
Kristin Peterson’s Speculative Markets: Drug Circuits and Derivative Life in Nigeria by Javier Lezaun
Duke University Press, 2014, 256 pages.
We tend to think of pharmaceuticals as chemical matter caught up in complicated legal and economic relationships, but it is probably more useful to think of them as legal artifacts oriented towards a potential (but by no means guaranteed) biochemical fulfillment. Up until they enter our bodies, when they are being discovered and developed, patented, registered, packaged, sold and bought, pharmaceuticals trade in promises of therapeutic and financial value that are sustained, first and foremost, by legal means. “Legal” doesn’t mean here clearly and conclusively defined, but rather the opposite: a form of ambiguity that sustains a practice of continuous speculation. While they circulate in networks of exchange, pharmaceuticals are best understood as legal fictions. As Lon Fuller put it: lies that are not meant to deceive (Fuller 1930).
In her book Speculative Markets (previously reviewed by Emilie Cloatre), an ethnographic investigation of pharmaceutical trading in Nigeria, Kristin Peterson introduces us into a world where lies proliferate but deception seems to be in short supply. This is a world where vast quantities of drugs of dubious provenance and questionable efficacy change hands in places that are ostensibly not markets, at prices that shift quickly and wildly and for no obvious reason. Yet this is also a world where everybody seems alert to the mismatch between appearance and reality, and stands ready to capitalize on this discrepancy to eke out a meager living. Everybody, that is, except the final user of the drug, the patient in need of medical treatment who, arriving at the end of a long chain of transactions, must consume a product that is for all intents and purposes indecipherable and likely to be inefficacious at best.
The most obvious lie featured in Peterson’s story is that of the counterfeit, the fake drug disguising its true identity and claiming to be something that it is not. In Peterson’s account, however, “fake” is a suitably elastic concept. Next to the product intentionally advertising a false corporate identity (an improperly branded drug), one encounters deliberately or accidentally adulterated generics, truthfully branded products manufactured under substandard conditions (or marketed for the wrong indication), and multiple combinations of all of the above.
It is easy to get lost and give up any hope of certainty in this world of pharmaceutical make-believe – elsewhere Peterson has described the unknowability that besets both the participant and the observer of these shadowy market exchanges as a “phantom epistemology” (Peterson 2009) – but Speculative Markets usefully shifts our attention from the elusive identity of products to a more relevant set of questions: what are the mechanisms that sustain this seemingly uncontainable process of speculation on the quality of pharmaceuticals, who benefits from it, and how does it impact those in need of medical care? For the ultimate legal fiction at stake here is not the fraudulent commodity, deceitful as it might be, but the medium through which that commodity circulates: the idea of the market as an abstract space of exchange where supply and demand meet through the mechanism of price to produce public welfare.
Peterson begins her book by reminding us that in the 1970s and early 1980s Nigeria was a promised land for multinational drug companies. The oil boom of the 1970s created a new middle class that was attracted by the symbolic value of brand-name pharmaceuticals and had the financial means to afford them. Virtually all the large North American and European companies established operations in the country, opening manufacturing and packaging plants and nurturing a professional class of pharmacists, managerial cadres and marketing representatives ready to supervise the flourishing West African market on behalf of Big Pharma.
It is striking how much the Nigeria of this period approximates current Big Pharma expectations of new profit-generating “emerging” markets. These days one can easily find references to Nigeria in consultancy brochures and investor conferences extolling the prospects of “frontier,” “second-tier,” or (in a typically ingenious neologism) “Pharmerging” markets (e.g. IMS Consulting Group 2013). What seems to have been forgotten in these anticipations of corporate opportunity is the fact that such a market did exist in Nigeria not very long ago, that a version of this pharmaceutical future is already behind us. And there seems to be even less recollection of the causes that brought about its demise. As Peterson notes, this Big Pharma utopia was destroyed by a combination of structural adjustment policies and military dictatorships that disenfranchised, impoverished and ultimately decimated the (relatively) affluent consumer class that could have sustained the expansionist plans of multinational companies.
Peterson spends considerable time detailing the destructive impact of the IMF-enforced adjustment program on the institutions and social fabric of the pharmaceutical trade in the late 1980s and early 1990s. Currency devaluations quickly wiped out the margins of multinational companies, since they imported drugs and raw materials from abroad, but set their turnover targets in US dollars. In the meantime, and more importantly, the precipitous decline in the standards of living shrank the pool of potential consumers and thereby eliminated the rationale for further rounds of corporate investment. One after the other, Big Pharma companies divested themselves of their Nigerian operations, repatriated most of their foreign personnel, and sought more profitable investment opportunities elsewhere.
The rest of Speculative Markets is dedicated to describing the intricate and fascinating trade system that replaced the multinational brand-name drug market so thoroughly dismantled by the “liberalization” policies of the 1980s. This is, first of all, a market awash with drugs, but drugs that are rarely produced in Nigeria, or even Africa. Instead, pharmaceuticals arrive from all over the world through circuitous routes that often involve plenty of lateral exchanges and “round-tripping.” Generics (a category that has here little, if any, regulatory meaning) dominate, and are sourced primarily from Indian companies or their subsidiaries. The little indigenous manufacturing there is relies on the importation of raw materials, primarily from China or through Chinese suppliers, since, despite being a huge oil producer, Nigeria lacks the refining capacity to produce its own chemicals at competitive prices (this is, incidentally, one of the few books that begins to disentangle the profound connections between the oil and pharmaceutical economies).
One of the locations where these global flows materialize is Idumota, the largest open drug market in Lagos and a key off-loading point for drugs entering the country. Some of the book’s best pages are dedicated to visiting and revisiting this bewildering place and the people who make a living in it. Created by Igbo traders displaced in the aftermath of the Biafran War, and surrounded by a thriving popular economy of petty trade and informal credit, Idumota is today the epicenter of pharmaceutical wholesaling in Lagos and a key node in the West African drug distribution network.
Yet Idumota is hardly the only place where drugs change hands in Lagos. As Peterson shows, impromptu markets spring up all around the city – on sidewalks and under bridges, on long-distance buses or in the narrow passages that form between lanes of congested traffic. These are unsupervised, often ephemeral markets, but they provide an indispensable service to an impoverished population unable to afford the products available on government-sanctioned pharmaceutical premises
Peterson’s attention to the location of pharmaceutical exchange in the interstices of urban life brings to mind Jean-Christophe Agnew’s famous account of the creation of early modern markets (Agnew 1986). According to Agnew, the physical and symbolic segregation of markets to extraterritorial spaces – liminal settings that markets often shared with spaces for theatrical performance (another domain where the ratio of lies to deception is unusually high) – was instrumental in making the sphere of economic exchange (like that of dramatic representation) a “world apart,” a separate domain unable to contaminate the rest of the body politic. Eventually, the market would cease to describe a specific physical location and came to designate a “placeless process” traversing social life – a process whose depiction (and domestication) became the hidden subject matter of much of English Renaissance theatre.
Peterson constantly relates the movement of pharmaceutical commodities to specific points of exchange, and in so doing puts the market back in its place. This place is not the geographically or symbolically segregated spaces of which Agnew spoke, but the always-shifting cleavages between official and unofficial domains that characterize life in the contemporary African city. Struggles to define and captures these intervals thus become central to the distribution of power over pharmaceuticals and their circulation. In a section that is almost comical, Peterson recounts the efforts of Nigerian authorities to suppress the “open” drug trade in Lagos, efforts that were thwarted by the courts’ designation of Idumota as a residential area. In other words, the largest site of pharmaceutical exchange in the city is legally not a market, and is effectively beyond the jurisdiction of official authorities.
Peterson’s attention to the topography of exchange is complemented by an equally persistent interest in the livelihood strategies of local drug traders and pharmacists. We get many small glimpses of the hardship involved in making a living out of the constant fluctuations in price and quality. This is a life completely attuned and beholden to microscopic boom-and- bust cycles, a mode of existence predicated on the anticipation of constant market volatility that Peterson defines as “derivative life.”
Underneath the entrepreneurial exuberance of the Nigerian drug trade, however, lie deep-seated inequities. There is, at the heart of the system, a structural discrepancy between medical needs and available treatments. This discrepancy is not the result of immoral behavior – evil counterfeiters flooding the market with substandard drugs, greedy multinationals withholding essential therapies, corrupt officials turning a blind eye to adulterated products, etc. – although there is plenty of that to be sure. The mismatch is rather the consequence of a market organized around a single and consistent imperative: the capitalization on continuous and seemingly capricious price movements through multiple strategies of “chemical arbitrage.” In the absence of effective market supervision, or of any mechanism linking pharmaceutical marketing to public health criteria, the volatility of prices is reflected almost immediately in a parallel volatility of drug chemistry and dosages. The result is a proliferation of drugs that deviate from standard ranges, or are quickly renamed and rebranded to capture short-term price differentials in parallel markets. This is a speculative logic that unfolds and expands without bounds, and without regard to medical needs or changes in the local biologies of disease.
In conclusion, Speculative Markets tells a remarkable story of market creation, destruction, and rebuilding. It is a clear-sighted, hard-hitting book, but not a despairing one (it ends, in fact, on a distinctively optimistic note). It is also a book that demonstrates the contribution that ethnographic research can make to our understanding of the lives of pharmaceuticals, in particular by addressing an intriguing but often neglected question: what happens to drugs after they leave the manufacturing plant, but before they are consumed and metabolized by human bodies – when they are nothing more (and nothing less) than circulating commodities. Peterson’s book takes us on a journey that reveals all the complexity that hides behind the term “circulation.” It is not an easy ride, though, and at times the reader (at least this one) gets lost trying to navigate the labyrinthine trade routes and complex calculative strategies that structure the Nigerian drug trade. But maybe this sense of disorientation is appropriate. We experience, in a vicarious way, the epistemological mayhem that confronts anyone who enters this world of pharmaceutical speculation and tries to make profitable sense of it.
Javier Lezaun is James Martin Lecturer in Science and Technology Governance in the School of Anthropology and Museum Ethnography, University of Oxford.
Agnew, J-C. (1986) Worlds Apart: The Market and the Theatre in Anglo-American Thought, 1550-1750 (Cambridge: Cambridge University Press).
Fuller, L. (1930) “Legal fictions” 25 Ill. L. Rev. 363-399.
IMS Consulting Group (2013) Pharmerging markets: picking a pathway to success.
Peters, K. (2009) “Phantom Epistemology,” in James D. Faubion and George E. Marcus (eds.) Fieldwork is Not what it Used to Be: Learning Anthropology’s Method in a Time of Transition (Ithaca: Cornell University Press).
Varieties of Tulpa Experiences: Sentient Imaginary Friends, Embodied Joint Attention, and Hypnotic Sociality in a Wired World by Samuel Veissière
This article presents a summary and discussion of key findings from ten months of experimental cyberethnography among tulpamancers.[i] Tulpas, a term reportedly borrowed from Tibetan Buddhism, are imaginary companions who are said to have achieved full sentience after being conjured through ‘thought-form’ meditative practice. Human ‘hosts’, or tulpamancers, mediate their practice through open-ended how-to guides and discussion forums on the Internet and experience their Tulpas as semi-permanent auditory and somatic hallucinations.
Studying Tulpas and their hosts is fascinating on many counts, not least because it provides an opportunity to observe an emerging culture and the mediation of new kinds of persons – in this case, that of multiple humanoid and non-human persons ‘hosted’ in single bodies and a large-scale sociocultural matrix of ‘healing’ generated without physical interaction between members. As an anthropologist who underwent retraining in cognitive science, however, I am less concerned with the seemingly ‘strange’ and ‘exotic’ aspects of Tulpamancy and am most interested in what the practice can reveal about fundamentally human mechanisms and processes. Thus, I seek to investigate (but in no pre-determined order) how neurocognitive, attentional, and narrative processes invariably shape all forms of sociality and experiences of personhood on the one hand, but also how social, political, and technological processes invariably shape mechanisms of attention, cognition, and perception. I gravitate toward sociocognitive, enactive models of hypnosis as ways of mediating sociality and personhood.
My investigation is grounded in the study of interactions between environment, cognition, and culture. In this model, mind is understood as embedded, embodied (Kirmayer, 1992a; Csordas & Masquelier, 1997), enactive (Varela, Thompson & Rosch, 1991), and extended (Clark & Chalmers, 1998) to an organism’s whole interactive environment. Just like, as Evan Thompson elegantly puts it, the flight of a bird isn’t an intrinsic property of its wings but exists as a relation between the organism and its whole environment, thinking isn’t ‘inside’ the brain, but distributed in a broader ecology of interacting sense modalities and environmental matrices (Thompson, 2015; Bateson, 1972; 1980). Here, I opt for a working definition of ‘culture’ borrowed from the natural sciences: when clusters of individuals within a similar species engage in cumulative social learning and develop relatively stable ways of doing things that differ from the ways of other groups, we can speak of culture (see Tomasello, 2009). Here, I add sensory experiences, modes of affect, joint attention, and hypnosis to the set of cumulative, iterative, differentiated phenomena that arise through social learning and give us forms of life we call ‘culture’.
Before presenting aspects of Tulpamancy practice in greater detail, I begin with an old question: how can highly similar sets of embodied mental representations, experiences, and behaviours come to be shared by large groups of individuals who never interact physically with one another? Are socialities mediated online paradigmatically different from ‘physical’ ones, or is a fundamentally similar process at stake?
1. The language of invisibility and the invisibility of language
“Sometimes people get logically conscience-stricken […] and like to have some criteria of ‘real’ things, e.g. entities occupying space, and will then say things like ‘boundaries are imaginary lines’. They seem to think that countries occupying territory are real but the lines separating them are somehow imaginary.”
Ernest Gellner, Language and Solitude, 1998, p54
“No one, wise Kubla, knows better than you that the city must never be confused with the words that describe it.”
Marco Polo, addressing the Great Kubla Khan
“Memory’s images, once they are fixed in words, are erased,” Polo said, “Perhaps I am afraid of losing Venice all at once, if I speak of it. Or perhaps, speaking of other cities, I have already lost it, little by little.”
Italo Calvino, Invisible Cities, Harvest books, 1974
“I wonder if the Internet is like a city”, Ian Gold told me one morning over our third round of double-espressos. Ian is a philosopher of psychiatry who is investigating why certain migrant and minority groups living in cities experience higher rates of psychosis than they do in their home communities (Gold & Gold, 2014). Discrimination, adversity, stigmatization, and living in fragmented polities are increasingly understood as important causal variables in the mediation of mental illness (Heinz, Deserno, & Reinighaus, 2013), but the question of how such differentiated trends become distributed and experienced with such violent stability and precision remains open. Large cities and their polities, after all, like ‘societies’, are difficult entities to handle physically and cognitively. “What kind of imagined community is a city”, Ian went on, “when most people’s daily routines are limited to bounded spheres like home and work, or impersonal interaction with strangers and a few shop owners?”
This is an old question: how can societies be understood, ‘internalized’, or embodied – how can societies hold – when the vast majority of the people, ideas, and infrastructure that make up these totalities are invisible to individual members? One might as well propose that, given the non-physicality of interaction between members, it is cities and societies that are like the Internet. Invisibility and physical in-interaction, thus, are important pieces in this puzzle.
For Erving Goffman, who championed studies of face-to-face interaction in modern societies, the “anonymized”, “surface character” of life in cities is routinized through what he called “civic inattention” (Goffman, 1971, p385) – that is, through the many ways in which strangers avert their gazes, avoid conversations or physical contact, and reinforce private boundaries in the public sphere. Loneliness and invisibility, as Goffman saw it, are logical outcomes of civic inattention as a “mode of personal territoriality” (ibid, p359). As a theoretician of sociality, I am particularly interested in how different regimes of joint-attention mediate lived experiences of personhood with distinct sensory, somatic, ‘embodied’ qualities. Civil inattention for example, is a specific regime of attention, but it is certainly not an absence of attention. In Goffman’s Invisible City, attentional resources are being mobilized to not pay attention to certain features of the world – particularly people caught in a symbolically-marked game of allegiances. Those that come to feel most generally inattended-to, thus, will come to embody their invisibility in physically unbearable ways. This is a terrible problem, but the general question remains: given the infinitesimally narrow possibilities of horizontal interaction between members of any given polity, how can it come to hold at all with such violently predictable experiential quality? What is the minimal physical requirement for any scheme of sociality – for any imagined community – to be embodied? What is the maximal spatial and cognitive capacity for joint-attention – usually understood as being limited to dyadic, or spatially-bounded, interaction between two or a few more actors? Could it be that Calvino got the City wrong in his anti-representationalist fable? Isn’t it, rather, that language does not so much fail to capture the city, but instead brings it into being?
Steven Levinson at the Max Planck Institute for Psycholinguistics has taken this hypothesis seriously, and has led a series of elegant experiments to revise our current understanding of linguistic relativity, first proposed by Benjamin Whorf in the early 20th century and subsequently dismissed by most social and cognitive scientists. In an experimental study of the Senses in Language and Culture, Levinson and colleagues attempted to correlate the richness and diversity of sensory experiences across cultures with the grammatical categories and specific terms attributed to the sensorium in different languages. They found that speakers of languages (like American English) that lack gradient olfactory terms, for example, performed very poorly at identifying common scents from their environment (like cinnamon) when presented with scratch-and-sniff cards. The Jahai of the Malay Peninsula, conversely, possess a very rich olfactory vocabulary and could identify an equal amount of smells and shapes.
Could it be, then, that immersion in new narrative practices with terms like ‘tulpa-forcing’, ‘possession’, or ‘wonderland’ spreading through internet technology is a sufficient condition for the mediation of new ways of experiencing touch, voice, pleasure, and synaesthesia, to name but a few of the ‘senses’ mobilized by Tulpamancy?
2. Varieties of Tulpa Experiences Origins
The term Tulpa began circulating in the West in 1929 following the publication of Magic and Mystery in Tibet [Mystiques et magiciens du Tibet] by the Belgian-French explorer Alexandra David-Néel. The author, who reported observing the practice in Tibet, claimed to have created a Tulpa of her own in the image of Friar Tuck. Often fully transcribed as sprul pa’i sku from the Tibetan སྤྲུལ་པ, the term can be translated as ‘emanation’ or ‘incarnation’, and is associated with the physical body (Nirmanakaya). A Tulpa, as presently understood in the tulpamancer community, is a sentient being who becomes incarnate, or embodied through thought-form.
Tulpas and the senses
Drawn from primarily urban, middle class, Euro-American adolescent and young adult demographics, most Tulpamancers cite loneliness and social anxiety as an incentive to pick up the practice and report overwhelmingly positive changes in their individual and offline social lives, in addition to an array of new, ‘unusual’, but largely positive sensory experiences. These include (in order of frequency) auditory, tactile, visual, and olfactory sensations. “Raw thought”, “intuitive thinking”, “speaking with no words” and “communicating with images, feelings and music” are also reported along with other non-verbal, non-narrative forms of interaction. One informant, for example, a Caucasian-American young woman majoring in Cognitive Science at Midwestern University, reports being underdressed and cold as she was walking to class one morning. She explains that upon sensing that her host was cold, the Tulpa took off his [Tulpa] coat to place it on her [the host’s] shoulders, producing a feeling of warmth and the distinct sensation that she was wearing another layer of clothing. Such reports of spontaneous help from Tulpas in social, environmental, and professional situations abound and, indeed, seem to characterize the practice.
Sexual and romantic interactions are controversial topics in the community, with a growing consensus tending to converge toward a taboo on the latter. Because Tulpas are imagined, experienced, interacted with, and collectively validated as sentient persons with mental states, propositional attitudes, feelings, bodily sensations, biases, and preferences of their own, the issue of mutual consent is deemed crucial. Creating a Tulpa for one’s selfish enjoyment, as such, is understood to be just as unethical as seeking a one-sided, power-imbalanced relationship of any kind. General possibilities of tactile and multi-sensory experiences inherent in the practice, however, indicate that the ‘taboo’ was put in place to establish norms around a common, or, at the very least, possible practice.
In addition to imagined agents, tulpamancers’ mental constructs include spaces for Tulpa-host interaction usually termed “mindscape” or “wonderland”. Tulpas often assume human form, but many are imagined within a continuum of humanoid variations with gender-fluid, gender-neutral, or pan-ethnic traits. Fandom culture drawn from fantasy-oriented genres also frequently prompts the forcing of non-human Tulpas such as elves, dragons, or ‘imaginary creatures’. A sizeable, but non-majoritarian section of the community seems to have emerged from Internet forums dedicated to Bronies – the so-called ‘highly unexpected adult male fans of [children’s cartoon series] My Little Pony’. Many tulpamancers, thus, report creating one or more pony Tulpa.
Tulpa folk theory
The community is primarily divided between so-called psychological and metaphysical explanatory principles. In the psychological community, neuroscience (or folk neuroscience) is the explanation of choice. Tulpas are understood as mental constructs that have achieved sentience. The metaphysical explanation holds that Tulpas are agents of supernatural origins that exist outside the hosts’ minds, and who come to communicate with them. Of 118 respondents queried on the question, 76.5% identified with the psychological explanation, 8.5% with the metaphysical, and 14% with a variety of “other” explanations, such as a mixture of psychological and metaphysical.
Several Tulpamancers (from both psychological and metaphysical communities) report having had sentient imaginary friends for up to several years before finding out about Tulpamancy. For one informant, the practice had been established in her family for several generations. Many Tulpas from the psychological tradition, when interviewed separately from their hosts, also claim to have ‘been around’ in their hosts’ consciousness before their hosts became aware of them through Tulpamancy.
Of 73 Tulpamancers tested on this question, 37% reported that their Tulpas felt “as real as a physical person”, while 50.6 % described their mental companions as “somewhat real – distinct from physical persons, but distinct from [their] own thoughts”. 4.6% claimed “extremely real” phenomena, where Tulpas were “indistinguisable from any other agent or person”. Only those 4.6% claimed to hear and see their Tulpas “outside” their heads. The median length of Tulpamancy experience for these respondents was one year. Tulpamancers with 2+ years of experience reported higher degrees of somatic experience.
Demographic, social, and psychological profiles
The age range of interviewed Tulpamancers in another survey (n=141) was 14 to 34 years, with most falling in the 19 to 23 range. The male to female ratio is approximately 75/25 (male/female), though up to 10% identify as gender-fluid, and explore further ‘creative’ gender and ethnic variations through their humanoid Tulpas.
Tulpamancers are predominantly white, middle to upper-middle class urban youth. Of 141 respondents surveyed in September 2014, only two described themselves as “African American”, with two more reporting being “half black”. Four respondents described themselves as Asian, 4 more as “half Asian”, and one as “one quarter Asian”. All others described themselves as “white”, or by a variety of euro-American ethnic labels (Irish, German, Russian, etc.). One identified as “Siberian”. Most are undergraduate university students, but up to a third are fully employed. The IT field is the most commonly reported sector of employment.
The majority of Tulpamancers are located in urban areas in the US, Canada, the UK, Australia, Western Europe, and Russia. The breakdown from a survey taken by 141 tulpamancers in September 2014 was as follows:
The only known groups of tulpamancers to meet in person at the time (Sept, 2014) were located in Moscow and Omsk, where weekly gatherings were held with Skype-conferencing capacities for other Russian-speaking tulpamancers located outside these locations. Other group meetings have since emerged in St Petersburg, Volgograd, and other parts of Siberia. English and Russian seem to be the two dominant languages for the diffusion of Tulpa culture. As of February 2015, the Reddit forum through which most tulpamancy conversations in English converge had 7740 members, but less than 200 active posters. The Russian social networking site Vkontakte also listed 6000+ members, with a smaller ratio of active posters.
From coding of qualitative interviews collected in large surveys, the most common tulpamancer profile to emerge is one of a highly cerebral, imaginative, highly articulate, upper-middle class, formally educated person with many consistently pursued interests, talents, and hobbies, but limited channels of physical social interaction.
Typical tulpamancers are confident about their talents, but are quite modest and socially shy. They possess – or have cultivated – a high propensity for concentration, absorption, hypnotisability, and non-psychotic sensory hallucinations. Their limited social life and social anxieties, however, are not correlated with impaired levels of empathy and interest in other people. They score average or above average on empathy and Theory of Mind tests, indicating that their ability to relate to other humans is either optimal or enhanced (NB: I used my own revised version of Baron-Cohen’s empathy and ASD quotients tests. As these primarily rely on explicit mindreading that can be passed logically, more testing of implicit cognition is required.)
Loneliness is overwhelmingly reported as a common factor for creating Tulpas, who are described as “most loyal” and “perfect” kinds of companions. Of 74 tulpamancers tested, the majority scored higher than average on shyness scales and lower than average on sociability scales for comparable population sets (note: I used my own scales, revised from Asendorpf et al.). Most respondents reported some degrees of social anxiety. Their ‘happiness’ levels were assessed through a variety of qualitative interview tools and correlated with the Positive and Negative Affect Schedule Scale (Watson et al., 1988), on which all scored very highly (n=74, m=35.5, sd=7.5, r14-49)
High scores (n=74, m=21.35, sd=6.7, r1-33) on the Tellegen Absorption Scale (to measure capacity for hypnotisability, synaesthesia, and ‘trance’ states) seem to reflect practice as much as proclivity. In other words, respondents reported improvements on their ability to concentrate, visualize, and experience sensory ‘hallucinations’ since taking up Tulpamancy. Among the most interesting results is the negative correlation between low sociability and high empathy. Further ethnographic findings from forum discussions and interview data also indicate a moderate-to-high prevalence of tulpamancers who identify with, or have been diagnosed with, Asperger’s syndrome. No significant findings of impairment were found for either of the two respondents who took the Theory of Mind test in the first survey.
Relationship with mental illness
A subsequent survey was designed to target tulpamancers who had been diagnosed with or identified with mental illnesses or DSM-type psychopathologies. The most common ‘conditions’ reported by respondents (n=24), excluding social anxiety, were, in order of frequency, Asperger’s Syndrome (25%), Attention Deficit Disorders (21.4%), general anxiety (17.8%), depression (14.4%), and Obsessive Compulsive Disorder (10.7%).
The survey revealed a similar trend of overall reported improvement. 93.7% of respondents (n=33) expressed that taking up Tulpamancy had “made their condition better”.
54.5% of the respondents who identified with Asperger’s or Autistic Spectrum Disorder (n=11) claimed that their ability to read physical humans had improved with Tulpamancy, while 45.5% reported being unsure about changes in mindreading, despite overall positive changes in their social lives.
“I would say that it [my ability to read other humans] has improved quite a lot since I have been with my tulpa”, claimed one informant. “Although, at this point, its [sic] difficult to say if it’s my ability that is improving, or if I am relying on my tulpa to recognize things that I miss.”
This prompted further research on how Tulpas perceive and transcend their hosts’ limitations. When queried individually via email or specific questionnaire entries, Tulpas reported overall cognitive and affective difference from their hosts’ ‘baseline’ and often claimed relative or total independence from the hosts’ conditions. Mixed Tulpa responses on ASD-type conditions, however, indicated that most, but not all, Tulpas shared some aspects of their hosts’ autism, but were generally able to benefit from their position of ‘observer’ free of ‘participant’ obligation (see the Tulpas’ full responses here).
Inner voices: language, narrativity and episodicity
The role of narrative in the mediation of tulpa experiences – and by extension, to any experience of what it is like to be conscious – demands careful examination. Tulpamancy, as we have seen, entails explicit efforts (but only in the forcing stage, which typically lasts up to four months) at narrating the Self, in addition to initially conscious cognitive costs in the harnessing of absorption and the training of hypnotizable proclivity. The ‘self’ in this case is initially narrated as ‘different’ kinds of multiple selves within single bodies, and subsequently operates automatically once the practice is successfully enskilled.
This raises specific and general question about the role of language and inner narration in the mediation of conscious experiences. In Against Narrativity, an important essay in the philosophy of mind and language, Galen Strawson (2004) challenged what he took to be the naïve celebration of narrative as a linchpin of conscious experience. How literally, he asked, should we take the trope that we become the autobiographical stories we tell ourselves (Bruner, 1987) or perceive our lives as an explicitly unfolding narrative through which our sense of Self is constructed (Taylor, 1989)? Some people, he argued, are not particularly drawn to inner narration, and do not perceive their ‘Self’ as a continuous unit that persists over time and change. These types of Selves, which he termed ‘episodics’, tend to think of themselves as different persons in different moments and stages of their lives. He contrasted epidodics with ‘diachronic’ Selves, who tend to actively narrate the authorship of their life as a unified, continuous project. Strawson identified diachronicity and episodicity as personality types, and hypothesized that while both modes can co-exist and fluctuate within a single person, diachronicity seemed to be dominant in most contemporary experiences of selfhood. Anthropologist Maurice Bloch (2014a), in turn, recently proposed that while core neuro-phenomenal elements of sentience are universally shared by humans and other animals, cultural and historical differences were likely to be found at the level of narrative aspects of consciousness. He concluded, building on Strawson, that diachronicity might have become dominant in the West, and may be the locus of superficial difference that is too often extrapolated to the clichéd anthropological notion that the Self is an exclusively Western, post-reformation construct.
Tulpamancy offers an interesting case study to verify Strawson and Bloch’s claims, particularly in light of the central role of narrative in the practice. If a strong emphasis on inner-monologue is thought to lead to continuity and diachronicity, what to make of multiple selves enacted through narrative? Could different modes of narrativity be conducive to episodicity? Could episodic proclivities remain dominant in spite of the narratively intensive modes of alphabetic literacy that shape our subjectivities (see Collins, 1995, for a review of debates on literacy and cognition)? How much do we know about these differences within and across populations?
The distribution of diachronicity and episodicity, as it turns out, has yet to be empirically examined on any large scale. Expanding on the rare experimental tools devised to assess this question (Chandler et al., 2003; Hertler et al., 2015), I designed a questionnaire that weights people’s experience and intensity of inner-narration with their perceived continuity of conscious experience (you can take the test and see your results here) Respondents were matched with one of four points on a diachronic-to-episodic scale, and were later grouped as belonging to either one of two spectrums.
The same questionnaire was given to tulpamancers (n=113) and a group of non-tulpamancers (n=93). While 59% of non-tulpamancers fell in the diachronic spectrum, 70.8% of tulpamancers tended toward episodocity. In debriefing sessions with both control groups (a tulpamancer forum, and two groups of undergraduate and graduate students), many informants reported feeling a strong sense of multiplicity and discontinuity in their lives against the otherwise strong presence of an inner-narrative voice. We concluded that episodic proclivities may be more prevalent than previously assumed, and that more comparative data from non-academic, less hyper-verbal population sets were required to make better arguments. Overall questions remained on the place of narration in ‘thinking’ (see Bloch, 2014b, for arguments on how thinking is not ‘language-like’). As a trilingual, triliterate person with strong episodic tendencies, for example, I am rarely aware of the language (if any) I am thinking in, unless I am working on an explicitly narrative task like rehearsing arguments for a lecture, talk, imaginary conversation, or paper. Neurolinguists and clinicians, however, have found that psychotic manifestations in multilingual patients can occur in any of the patients’ languages (Paradis, 2010). When queried on the question, several multilingual tulpamancers explained that different tulpas within a single host could display distinct linguistic identities (e.g. one Spanish-speaking tulpa, and one English-speaking tulpa), while others reported code-switching with their tulpas (e.g. English, or Spanish, or Spanglish between tulpa and host). Others described having tulpas with foreign accents from languages in which the hosts were not proficient (e.g. Anglophone host with a tulpa who speaks English with a Japanese accent).
While inner-voice and phenomenal aspects of consciousness are likely to remain hard problems to study with any populations, my current claims about tulpamancy’s therapeutic effects will need to be supplemented with further face-to-face ethnographic, behavioural, and neuroscientific findings.
I now turn to a discussion of the interactive mechanisms that make tulpamancy – and, I argue, any experience of human personhood – possible.
3. Theorizing Tulpas: Personhood in Shared, Embodied, and Hypnotic Perspectives
The kinds of neurological, sociocognitive, political, linguistic, and technological mechanisms that enable tulpamancers (and, as we will see, members of any formal-enough ‘culture’) to experience such a stable embodied sense of personhood (in this case that of multiple and ‘healing’ forms of personhoods) warrants careful discussion. This requires detours through such disciplines as cognitive psychology, ethnology, ethnobiology, linguistic anthropology, the neuroscience of attention, and social approaches to hypnosis.
Tulpamancy is a new cultural phenomenon that has yet to be studied ethnographically and scientifically. Psychological anthropologist Tanya Luhrmann mentioned the community in a 2013 New York Times op-ed and offered preliminary comments about links with the Cognitive Science of Religion (CSR), in which the perceived presence of supernatural agents in most human cultures is understood as an evolutionary ‘by-product’, or maladaptive properties of mind. Luhrmann, as I explain below, draws on her own studies of ‘hallucinations’ and ‘unusual sensory experiences’ among Pentecostal Christians to depart from these evolutionary models and emphasizes the learning-dependent, absorption-and-practice-intensive, ‘healing’ quality of interaction with imaginarily conjured agents.
Here, a brief review of the cognitive literature on ‘religion’ (or human belief in and interaction with ‘supernatural’ agents) and ‘animism’ will give us further clues to theorize Tulpa and Tulpa-like experiences.
In the first wave of CSR theorizing, the inference of supernatural agents from the world around us is explained as more or less inevitable features of cognition; namely a tendency to attribute anthropomorphic animacy and agency to living things and inanimate objects alike. This is why, in Steward Guthrie’s famous formula, we see “faces in the clouds” (Guthrie, 1993). A second current of CSR theory, championed by scholars like Pascal Boyer, Justin Barrett, Harvey Whitehouse, and Scott Atran, draws on evolutionary, cognitive, and experimental psychology, ethnography, and ethnobiology to expand on the insight that humans across cultures tend to project fundamentally human mental characteristics on supernatural agents. In this model, humans are said to reason about supernatural agents by expecting them to reason like humans, particularly in terms of goal-directedness, shared intentionality, intuitive physics, naïve psychology, and semantic and episodic memory. We expect a spirit who would return each night at midnight to torment us in our bedroom, for example, to know and remember that we will be in our bedroom at the same time each day, to understand and expect that and how we will be afraid of it, and to know just how to torment us in universally human and culturally specific ways. At the same time that we intuitively accept that the spirit can go through walls but not fall through the floor, we assume that we can read its mind as much as it can read ours. This propensity to attribute human-like intentionality (that is to say, ‘aboutness’, or the property of minds to be about, or represent things, events, and states of affairs) to non-human entities is posited to have evolved in predator-prey environments, when the need to detect the presence and predict the behaviour of dangerous agents would have been a crucial survival mechanism. Evolutionary psychologists working from a domain-specific, or ‘modularist’, hypothesis explain the emergence of specific cognitive modules to handle such specific problems in our environment. This ‘agent-detection’ cognitive module – or device – thus, is understood as going on overdrive, or agent-hyperdetection when we incorrectly infer the presence of agents. A major finding of second-wave CSR, however, is that agent-hyperdetection resulting in formal systems of ‘religious’ belief may also be universally counter-intuitive. The presence of roughly similar folk taxonomies of animals, plants, and kinds of objects across cultures, and most particularly of grammatical categories to account for animate vs. inanimate objects and agents seems to indicate a universal sense of intuitive physics in humans. The kinds of objects and entities to which human infants seem inclined to attribute animacy, however, are still the subject of debates among developmental psychologists. Baillargeon and Luoy (2005), for example, have argued from experimental evidence in a looking time study that 5-month-old infants are likely to attribute goals to any entity, living or not, that they identify as an agent. According to the authors, any moving thing (such as a toy car or self-propelled box) that may appear to be self-directed can be interpreted as an intentional agent. A similar study by Mahajan and Woodward (2007), however, offered that 7-month-old infants respond visually to the movement of both animate and inanimate objects, but only reproduce the goals of the former.
‘Animism’ applied to other animals and living species, in any case, appears to be much more intuitive, and is found in the cosmologies and practices of many cultures, from Amazonia and Melanesia to Siberia and the Canadian Arctic (see Descola, 2005). As biological anthropologist Agustín Fuentes explains, the similar sense modalities, central nervous systems, and cognitive architecture shared by all mammals are most noticeable in similar physiological responses to fear, pain, and suffering found across species. If humans can read highly stable indexical cues signifying fear, pain, or suffering (like squeaking, wailing, twitching, fleeing, or others signifying anger or threat) in members of other species, then it follows that we can recognize members of these species as sentient beings, or as persons.
A capacity for shared empathy and intersubjective recognition that extends beyond the boundaries of our own species, thus, may hint at a good recipe for the bounds and possibilities of agent ‘hyper-projection’. We may not know precisely what it is like to be Thomas Nagel’s bat, but we need no conscious cognitive effort or internalized cultural script to recognize that a bat is in pain. This is a good start. Revising Nagel’s famous thought experiment will shed more light on the ‘naturalness’ of the kinds of ideas which, when elaborated upon and frequently shared and practiced in a formal set of cosmological narratives, may lead to animist ontologies in which animals are recognized as full persons – or indeed, where Tulpas think on their own as full persons. Ask yourself whether, and to what extent you may be able to recognize that each of the following ‘animal’ is in pain: a bear, a dog, a dolphin, a raven, a salmon, a spider, and an earthworm. We may infer from a bird’s broken wing that it is in pain, or we may form semi-reflective beliefs about a twitching fish ‘gasping for water’ as we would gasp for air. We can most definitely recognize suffering in any mammal. But what about an ant or a clam?
The Cree, a historically hunting and gathering ‘animist’ people living in the Northern Boreal forest region of sub-arctic Canada, speak an Algonquian language that marks nouns as being animate or inanimate. Unlike gendered nouns in Romance languages, there are no ‘obvious’ rules for distinguishing the animacy of a noun. To complicate things further, word order is also very flexible, and subjects and objects are usually expressed by means of agglutinative inflection with a verb: this typically produces long words in which objects or agents are described in the context of an action. To speak of a particular kind of bird, for example, one may say yuuskahiiu, which literally translates as “it (marks the animated noun ‘partridge’) perches on a tree and does not fly away as the hunter goes near to shoot it”. Such complex, ‘covert’ grammatical categories were first described and labelled ‘cryptotypes’ by Benjamin Whorf, who pioneered the study of linguistic anthropology in the early 20th century. Since the rules of cryptotypes are unknown to native speakers, Whorf showed that they can only be identified when they are broken.
In my work with the James Bay Cree, I have asked Cree speakers if the word awesiis, which is usually translated as ‘wild animal’, corresponds exactly to the English word ‘animal’. My informants usually answer that it does, until I proceed by elimination to ask whether, say, a bear, a wolf, a moose, a human, a raven, or a spider can be an awesiis. While younger Cree hunters almost always contend that a human cannot be an awesiis, all agree that spiders, ants, bugs, insects, earthworms and mollusks do not belong to the class of ‘wild animals’. I take the finding that the Cree, a people with a well-documented sense of deep empathy, friendship, and intersubjectivity with many animal forms (see Scott, 2006) do not attribute personhood or readability to insects and mollusks to be added evidence that full-fledged empathetic animism becomes more counter-intuitive with phylogenetic distance between species.
For Boyer and others, the minimally counter-intuitive attribution of full-fledged intentionality and anthropomorphized personhood to non-human and inanimate entities is precisely what makes ‘religious’ narratives catchy, easy to recall, and efficient to transmit culturally. Add to this what Harvey Whitehouse calls a ‘doctrinal’ mode of religiosity with a hierarchy of ‘experts’, formal narratives, and frequently repeated rituals, and you have the recipe for the efficient, rapid spread of religious ‘beliefs’ and practices.
When my 7-year-old son tells me that his penguin friend at the Montreal Biodome “misses him”, or that the lump in his throat “doesn’t want to let [him] eat”, he is making a minimally counter-intuitive anthropomorphic inference about the agency of animals and living things. I, as his father and ‘expert’ purveyor or relevant doctrinal knowledge in a secular polity, would normally proceed to ‘correct’ him, thereby continuing to ensure that he is becoming more proficient at playing our particular language game. Were I to reward his inferences with rich narratives about Penguin-and-Lump-Personhoods within a broader social context in which everyone believes in and interacts with penguin-friends and lump-agents, my son would soon start having full conversations with his ‘imaginary’ friends.
Could it be, then, that ‘entirely imaginary’ agents are, in a sense, more intuitively imaginable, and so precisely because we can conjure them in the absence of the marks of illegibility found in what we readily recognize as inanimate or inpersonal entities – or in other words that our agent detection and projection abilities enable us to recreate personhood attributes with more intuitive precision in the absence of physical designata?
What, then, of the somatic quality of ‘belief’?
In contrast with the evolutionary literature, Tanya Luhrmann’s work with evangelical Christians has shown that somatically experienced religious practices (like hearing the voice of God) take ‘hard work’ and require a proclivity for and training in absorption, in addition to a broader socio-cultural context that is permissive of and conducive to such experiences. She also showed that, in such a context, these experiences could be highly rewarding and conducive to healing.
My work with Tulpamancers, which owes a lot to Luhrmann’s theorizing of absorption and learning, invited me to revise central questions in the problem of physicality and invisibility in the study of sociality, and pointed to more cumulative feedback loops between proclivity and practice. The social and cumulative nature of learning, the doctrinality of enculturation, and the sensory grounding of narrative practice have added further clues to this puzzle and pointed me in the direction of regimes of attention as a possible linchpin of socially mediated experiences and ways of being a person.
A good account of attention-mediated sociality will entail a revision of current sociocognitive models of joint-attention – usually understood as occurring between agents in direct interactional spheres of gaze-following, finger-pointing, or other verbal or non-verbal cues. In addition to demonstrating how non-indexical, narrative forms of doctrinality can allow shared intentionality and ‘joint’ attention to rise far beyond dyadic and spatially-bounded spheres in the process of forming joint goals and achieving jointly-mediated focus, more connections will need to be established with theories of active imagination. Just like attention in the Invisible City can be jointly focused away from individuals, so too can attention be jointly focused inward within individuals, thereby giving life and sensory grounding to individually imagined but collectively scripted agents. The bounded, invisible selves of modern cities, but also the healing, God-hearing selves of Pentecostal polities, or the multiple humanoid selves of Tulpamancy, thus, are best explained as produced hypnotically.
For neuroscientist Amir Raz, whose work on neural correlates of attention departs from reductionist models that present dissociation and trance as distinct (or ‘altered’) states of consciousness, hypnosis is simply any intense, or ‘atypical’ form of attention (Raz, 2004). Attention, in more anthropological terms, is socially shaped as much as it shapes sociality; or as the cultural psychiatrist Laurence Kirmayer puts it, “social discourse and narratives shape hypnotic experience, but they are themselves influenced by mechanisms of attention” (Kirmayer, 1992, p276; see also Spanos, 1996 for a more socioconstructivist view; Kirmayer, 1998 for comments on Spanos).
As an anthropologist, I am inclined to think of the ‘typical’ as any dominant normative scheme governing the expected order of states of affairs in any given context. But ‘typical’ regimes of attention, seen from other perspectives, will appear just as strange as any variation easily recognized as ‘hypnosis’ from the perspective of the dominant. If we strip all social schemes and ways of being a person of perspectival exoticism, they become equally strange, or equally banal.
Whitehouse’s mode of religiosity theory will offer further clue to explain the social grounding of these mechanisms. Whitehouse has hypothesized that the emergence of doctrinal modes of religiosity characterized by frequently repeated rituals and expert-led, formal exegetic, behavioural, and cosmological prescriptions played an important role in the rise of large-scale polities after the Neolithic, particularly because they tend to elicit widely-spread and conformist forms of semantic memory. He contrasts this mode with the historically older ‘imagistic’ mode found in many small-scale societies, in which rarely performed, intense, often dangerous rites and rituals tend to elicit high emotional arousal, which in turn facilitate episodic recall and strengthen social bonds between participants. While the doctrinal mode affords efficient and large-scale spread of similar mental representations and practices, imagistic modes can only be sustained in small groups and lead to highly personal exegetic reflection that rarely amount to a collective consensus on the ‘meaning’ and content of visions and experiences that arise in ritual. Whitehouse’s theory is most useful to my own theorizing of sociality outside and beyond religious contexts. The doctrinal and imagistic modes, here, are best described as modes of social learning and joint attention.
Tulpamancy provides a fascinating case of sequentially unusual co-existence between both modes. The hard-work of initial visualization, thought-form and forcing invariably affords a high-frequency, low-arousal, relatively formal set of prescriptions that structurally resembles the modes of doctrinality of our contemporary social, educational, economic, religious and emotional lives – but with more conscious degrees of discipline. The counter-normative, ‘atypical’ nature of the focus, however, and the gradual success in conjuring ‘unusual’ sensory experiences eventually leads to a highly arousing set of deeply personal interior imageries and sensations that triggers imagistic modalities. That these highly arousing, hard-to-reach experiences are mediated socially by a growing number of individuals working toward common goals consequently leads to a deep sense of reward validated in a common Tulpamancer ‘identity’, but one which affords a broader degree of improvisation from what is culturally and ecologically available to the hosts. Thus, a relatively formal script and a doctrinal modality (“visualize, concentrate, build shape and personality traits and wait until you experience voices and touch from sentient Tulpas”), when successfully endoctrinated, leads to human hosts who interact with such automatic processes as elvish, pony, dragon, or other bodiless minds and voices. The very hard work reported by Tulpamancers who attempt to undo their Tulpas points to the high degrees of automaticity achieved by mature practitioners. Getting rid of a Tulpa for a seasoned -mancer, thus, could be analogically situated somewhere between unlearning the piano or correcting one’s posture. Should the practice survive, gain public acceptance, and formalize itself for another decade, it will be as hard as willing onesself to forget how to read or completely unlearn a language in which one is fully fluent. But such examples, once more, pertain to scales of degrees, but not kind.
Classical anthropological insights from Mauss and Whorf to Bourdieu have shown us that ‘culture’ and ‘automaticity’ are in many ways synonymous. Turning to the absorptive, somatic quality of ‘belief’, Tanya Luhrmann demonstrated that religious experiences were Tulpa-like. I hope to show, in turn, that ways of being social and of being a person are also hypnotic and Tulpa-like. Tulpa and Human, indeed, as terms used to describe persons embodied and enacted through narration and joint attention, may well turn out to be synonymous.
[i]REB approval for this project was granted through McGill University. Please contact Lynda McNeil, Research Ethics Officer, with any questions or concerns. Note that the REB was concerned with the anonymity and protection of Tulpa persons as well as that of their hosts. This is a rather hopeful development in legal definitions of personhood.
Samuel Veissière is Assistant Professor of Anthropology at the University College of the North, and currently holds a Visiting Professorship in the Culture, Mind, and Brain program at McGill University where he is affiliated with the Division of Social and Transcultural Psychiatry and the Department of Anthropology. He has conducted fieldwork on emergent modes of sociality and cooperation in the context of street children livelihoods and transnational sex work in Brazil, ‘clandestine’ migration in the Pan-Amazon, indigenous revivalism, and various new forms of Internet cultures. His current work investigates the phylogeny and ontogeny of social cognition and cooperation with an emphasis on how children across cultures learn to reason about ‘kinds’ of humans and persons.
I am deeply grateful for all the support provided by Laurence Kirmayer and Ian Gold at McGill University. Tanya Lurhrmann’s work on absorption, voices, and unusual sensory experiences provided the initial inspiration for this study, and I am very thankful for all her pointers and comments on earlier drafts of this paper. I’d also like to thank Eugene Raikhel and Elle Nurmi for the generous editorial work, and Ahmed Soliman for his help with statistics. I am indebted to my undergraduate students in the Theories of Culture and Society class at McGill for their insightful comments and questions on the links between narration and consciousness. I’d also like to acknowledge the great work of Deanna Day, managing editor at Somatosphere, for pulling it all together.
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La Découverte, 2014, 250 pages.
Guillaume Lachenal’s Le médicament qui devait sauver l’Afrique – the English-language title provided by the publishing house is The hidden history of the medicine meant to save Africa – is devoted to a pharmaceutical scandal in colonial Africa that remains absent from the official history. The drug in question is Lomidine, which promised to eradicate sleeping sickness, a disease that threatened both the health of local populations and the colonial project. Yet the medication became problematic because of its toxicity when used carelessly (treatment campaigns caused dozens of deaths in Central Africa in the 1950s). It is through the lens of Lomidine use and misuse in Central Africa that Lachenal reimagines the relationships between medicine and colonialism. His fascinating book explores not only the limits of rationality and beliefs surrounding the design and use of this drug, but also the production of knowledge, memory, and oblivion by colonial doctors and administration.
Lachenal’s 238-page book is based on ten years of research in Africa (Cameroon, DRC, Senegal) and Europe (France, Belgium, Great Britain). In it, he addresses the ambivalent relationship between medicine and colonialism by showing how this apparent wonder drug – experimented with during the Second World War, injected intramuscularly and quite painfully – was a vector of colonial power. Indeed, the term “lomidinisation,” coined during this period, represented the frenzied campaigns (at times more than 80 people injected per hour) of the colonial hygienist project and its links to modernization. Millions of so-called preventive injections were administered in the 1950s in French, Belgian, and Portuguese colonies. By tracing this history, Le médicament qui devait sauver l’Afrique shows how the colonial social experience influenced the biomedical revolution of the second half of the twentieth century.
Lachenal uses the story of Lomidine to explore what he calls an “anthropology of colonial foolishness,” or bêtise – a difficult term to translate. Absurdity would come close, but does not exactly fit in the philosophical tenor of his study. Other potential translations, including stupidity, nonsense, and idiocy, would not accurately represent Lachenal’s argument as it addresses the “unreason present within the principles of rationality, authority and scientificity” (9) of colonial modernization policies. Bêtise reflects what Lachenal describes as the result of the stubbornness or the pigheadedness of particular social and scientific policies.
Lachenal demonstrates how the story of Lomidine, which does not fit with the grand narratives of colonial medicine in Africa (whether hagiographic or critical), reveals a new field of investigation around the “impotence, hubris and irrationality of the colonial government[i]” (19). One of the main and original arguments of the book is precisely to show how the colonial desire to know and to intervene was based in a culture of ignorance and impotence. Thus this historic and ethnographic investigation is not about the quest for order and knowledge, but rather about identifying ways of not knowing, which led colonial administrators to use Lomidine despite the mounting evidence of its negative side effects. For Lachenal, it is the trust of physicians and others in this medication and its administration, within a context of great uncertainty, which falls into the realm of foolishness. In other words, bêtise is not located outside of reason, but rather in the excessive practice of reason in a confident, bull-headed, and arrogant mode.
If the theoretical challenge is ambitious, the practical way to account for this bêtise is equally important. Indeed how does one account for this stupidity without taking an outside view? As a result, Lachenal writes from an insider’s perspective, so as to understand the inner rationale for absurd behavior. Combining present tense writing, newspaper and scientific vignettes, photos and attention to detail, this historical and ethnographic investigation binds together diverse sites such as the African villages that experienced the treatment, Rhodia archives in Besançon, and professional and friendship networks between colonial doctors moving between the Department of Hygiene and Mobile Prevention, and the French Ministry of Overseas and Specia, a Rhône Poulenc subsidiary that manufactured Lomidine. Lachenal’s direct writing style is a good match for exploring the “poetics of the time” (75), where the need for numbers fed and justified an eradication project based on coercion, racialization (white people often received different treatments), and faith in hazardous and extreme treatments targeting individuals as a measure of population care.
In 1954, a lomidinisation accident in Gribi (East Cameroon), resulting from the use of unsterilized water in the preparation of the medication, killed more than 30 people and resulted in more than 300 gangrenous wounds. In chapters 7 through 9, Lachenal’s depiction of the colonial administration’s reactions to the accident allows us to understand the depth of his project, which applies ethnographic methods not only to interviews with health workers of the time (which the author conducted in Cameroon in the early 2000s), but also to archives, a move inspired by Ann Stoler. Following this approach, the author not only analyzes what the archives “reveal” – the accident, the uncertainty of the administration, the fear of being lynched by local populations – but also what they “do.” Specifically, their performativity, including documentation of political action to demonstrate how officials were proactive or how financial compensation was a demonstration of affection at the end of the colonial period. This ethnographic method allows Lachenal to consider the archives not only as a source of information, but also as a subject “whose rationale for production, classification, conservation and destruction is involved in the definition and the resolution of the case” (167). Lachenal convincingly demonstrates how the official documents in the archives served to silence the scandal that followed the 1954 accident, as they made conclusions of investigations unclear. The repetition of such accidents, impacting dozens of victims in Batouri, Nkoltang, and Fort Lamy, suggests that the colonial bureaucracy worked not only as a “filing machine,” but also as a “forgetting machine.”
In the final chapter, Lachenal addresses the technical and material enigma of the medication and its unintended effects, at once too troublesome for the official histories and too technical for social scientists. Central to this enigma is the fact that Lomidine was shown to be effective: the prevalence of trypanosomiasis declined sharply in the 1950s, but not because of individual prevention – the reason presumed at the time.[ii] By presenting scientific studies conducted in the 1970s in Kinshasa, Lachenal reveals the last piece of the puzzle in this final chapter. The medication was effective as a form of early treatment for those people infected, who had not been identified as such because of the poor sensitivity of tests, rather than because of the preventive role of Lomidine.
Overall, Le médicament qui devait sauver l’Afrique is a significant contribution to the fields of history and medical anthropology. First, as a social history of science and biomedicine in Africa, Lachenal’s research opens new avenues of inquiry for the analysis of the mechanisms of power as not only rationalizing but also comprised of failures, scandals, and sometimes stupidity. This enables the problematization of the biomedical encounter as a moment defined by both domination and critical opportunities. Second, Lachenal’s research enlightens the present time. Indeed, the book offers a new angle for the critical anthropology of global health crises such as Ebola in West Africa and new strategies in the fight against AIDS, notably by underscoring the need to remain vigilant vis-à-vis purely technical fixes to African health problems and the adverse effects of eradication dreams.
Finally, by presenting and describing the limits of reason, insofar as it becomes nonsense, Lachenal provides a new perspective on what has been called pharmaceutical reason[iii], sometimes presented as the ventriloquized voice of the pharmaceutical industry, other times as a window onto the neutral sociality of evidence, or even as a simple strategic logic. Conversely, Le medicament qui devait sauver l’Afrique addresses the complexity and mediocrity of this reason when attached to drug-related symbolic and material power. Setting this reason within an historical context allows one to question and investigate the power to create, beyond reason itself, therapeutic and technical cultures through dreams of eradication, and increasingly through “preparedness scenarios.”
[i] All quotes are original translations. Any mistakes in the translation or lapses of jugement are my reponsibility.
[ii] It is worth noting the massive “lomidinisation” campaigns aimed at using individual treatment as collective prevention; a rationale which upholds the new strategies in the fight against AIDS such as Treatment as Prevention (TasP). See Lachenal, G. (2013). A genealogy of treatment as prevention (TasP) in Giles-Vernick, T., & Jr, J. L. A. W. (2013). Global Health in Africa: Historical Perspectives on Disease Control. Ohio University Press.
[iii] Lakoff, A. The pharmaceutical reason, Cambridge, 2005.
Pierre-Marie David is a sociologist and pharmacist, and is currently a lecturer at the Faculty of Pharmacy, University of Montreal, in the Department of Medications and Population Health. He is also the scientific coordinator of the research group Méos (Medications as social objects). He received his PhD from the University of Lyon and University of Montreal. His doctoral dissertation is entitled The oblivion treatment: the ordeal of antiretroviral drug embodiment and AIDS treatment temporalities in the Central African Republic.
Here is a selection of journal articles published toward the end of March. Also check out this month’s first In the Journals post, and Science in Context’s special issue on mind and brain science in the twentieth century.
Disability Studies Quarterly (Open Access)
Cochlear implants and auditory-verbal therapy are the latest techniques and technologies used to make deaf people learn to listen and speak. This paper provides a genealogical analysis of the Cochlear Implant Program at SickKids Hospital in Toronto, Ontario, Canada and shows how this program exemplifies the medicalization of deafness while denying deaf children the opportunity to learn sign language. Using Foucault’s concept of governmentality, the relations between power, knowledge, truth and their influences on the program’s practices are revealed in order to provide insight into Canadian society’s conceptions of deafness. This analysis reveals the Cochlear Implant Program as a capitalist establishment that is supported by unquestioned reverence of modern medicine and technology, oriented by a quest for normalcy. The paper concludes by encouraging members of the Deaf community and their supporters to challenge the hegemony of normalcy by utilizing alternate research-based knowledge-truths of cochlear implants and sign language.
This article presents three critical case studies that explore the relationship between income and parental involvement in the education of children with developmental disabilities. Interviewed as part of a larger study on mothering children with developmental disabilities, Joy, Jackie, and Maya are low income mothers of children with severe developmental disabilities living in New Hampshire. These women describe carefully planned parenting practices designed to foster child development, which yield both engagement with and strategic disengagement from formal bureaucracies. This is a decided departure from previous theorization on low income mothers’ approaches to child development. Grounded analysis of these interview cases suggests that emotion management may be a critical factor in both structuring parental involvement with educational systems as well as enacting class differences within the special education system.
Biologising parenting: neuroscience discourse, English social and public health policy and understandings of the child
Pam Lowe, Ellie Lee, and Jan Macvaris
In recent years, claims about children’s developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However, what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this article illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children’s brains, with its accompanying deterministic perspective on parenting, overlooks children’s embodied lives and this has implications for the design of children’s health and welfare services.
What am I ‘living’ with? Growing up with HIV in Uganda and Zimbabwe
Sarah Bernays, Janet Seeley, Tim Rhodes and Zivai Mupambireyi
As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However, we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children’s experiences of living with HIV on treatment. We consider how the HIV experience is made in a symbiotic relationship between children, carers and healthcare workers and shaped by broader discourses. Despite the radical development in prognosis for children, their experience of HIV is largely constructed in relation to a language of ‘sickness’ through the promotion of medicalised talk and the recounting of past illness stories. This narrow narrative framework both reflects and reproduces core dimensions of the lived experience of growing up with HIV, which emphasises an absence of resilient healthiness in the face of ongoing vulnerability and risk. The challenges that children encounter in articulating alternative narratives that prioritise the relative buoyancy of their health is indicative of the broader uncertainty that exists around the future for these children at this point in the epidemic.
Vital Systems Security: Reflexive Biopolitics and the Government of Emergency
Stephen J Collier and Andrew Lakoff
This article describes the historical emergence of vital systems security, analyzing it as a significant mutation in biopolitical modernity. The story begins in the early 20th century, when planners and policy-makers recognized the increasing dependence of collective life on interlinked systems such as transportation, electricity, and water. Over the following decades, new security mechanisms were invented to mitigate the vulnerability of these vital systems. While these techniques were initially developed as part of Cold War preparedness for nuclear war, they eventually migrated to domains beyond national security to address a range of anticipated emergencies, such as large-scale natural disasters, pandemic disease outbreaks, and disruptions of critical infrastructure. In these various contexts, vital systems security operates as a form of reflexive biopolitics, managing risks that have arisen as the result of modernization processes. This analysis sheds new light on current discussions of the government of emergency and ‘states of exception’. Vital systems security does not require recourse to extraordinary executive powers. Rather, as an anticipatory technology for mitigating vulnerabilities and closing gaps in preparedness, it provides a ready-to-hand toolkit for administering emergencies as a normal part of constitutional government.
Biologies of betrayal: Judas goats and sacrificial mice on the margins of Mexico (open access)
Emily Mannix Wanderer
Invasive species are the subject of much debate and attention. Social scientific analyses of alien species have focused on rhetoric about invaders, arguing that the discourse about invasive species reflects how people think about nature, culture and agency. In this article, I argue for a focus not only on discourse, but also on what happens in practice in the encounter between field scientists and invasive animals. Through ethnographic fieldwork on Guadalupe Island in Mexico, I analyze both the place of islands in the Mexican nation and invasive species eradication programs as examples of ‘care of the pest’, that is, projects in which scientists carefully tend to invasive organisms in order to produce knowledge about them. This knowledge is then used against the animals to exterminate them in a ‘biology of betrayal’, and occasionally, animals are enlisted into these projects to aid scientists in eradicating fellow members of their species. This article shows how changing perceptions of the value of island ecologies affected the use of the land and the fates of the animals on Guadalupe Island as the island was variously configured as laboratory, field site and slaughterhouse.
The lively ethics of global health GMOs: The case of the Oxitec mosquito (open access)
Alex M Nading
Social scientists have recently brought renewed attention to the relationship between epidemics and environmental change. Vector-borne and zoonotic diseases (for example, dengue, malaria, avian influenza) are exacerbated by disturbances to the environment, yet historically most solutions to these problems tend to involve further disturbances to environments, notably the mass destruction of non-human life (for example, pigs, sheep, cattle and insects). This article analyzes ethical debates that arose in 2010, when the British biotechnology firm Oxitec Ltd. announced a field test of a technology that would change this story: a genetically modified (GM) version of the Aedes aegypti mosquito that transmits dengue. Designed to control mosquito populations through interbreeding, Oxitec’s mosquitoes are an example of what I call ‘global health Genetically Modified Organisms (GMOs)’. As both environmental interventions, like GM crops, and biomedical technologies, like pharmaceuticals, such organisms challenge not only the moral position of social scientists vis–à–vis vector-borne or zoonotic disease but also the relationship of environmental ethics to bioethics. Addressing these challenges alongside the abiding question of for-profit biotechnology’s role in global health, I suggest that global health GMOs might be assessed through a ‘lively ethics’ that emerges not in discrete regulatory spaces (‘body’, ‘nation-state’, ‘global environment’) but in more fluid ‘moral spaces’.
Pharmacogenomics, human genetic diversity and the incorporation and rejection of color/race in Brazil (open access)
Ricardo Ventura Santos, Gláucia Oliveira da Silva and Sahra Gibbon
Public funding for research on the action of drugs in countries like the United States requires that racial classification of research subjects should be considered when defining the composition of the samples as well as in data analysis, sometimes resulting in interpretations that Whites and Blacks differ in their pharmacogenetic profiles. In Brazil, pharmacogenomic results have led to very different interpretations when compared with those obtained in the United States. This is explained as deriving from the genomic heterogeneity of the Brazilian population. This article argues that in the evolving field of pharmacogenomics research in Brazil there is simultaneously both an incorporation and rejection of the US informed race-genes paradigm. We suggest that this must be understood in relation to continuities with national and transnational history of genetic research in Brazil, a differently situated politics of Brazilian public health and the ongoing valorization of miscegenation or race mixture by Brazilian geneticists as a resource for transnational genetic research. Our data derive from anthropological investigation conducted in INCA (Brazilian National Cancer Institute), in Rio de Janeiro, with a focus on the drug warfarin. The criticism of Brazilian scientists regarding the uses of racial categorization includes a revision of mathematical algorithms for drug dosage widely used in clinical procedures around the world. Our analysis reveals how the incorporation of ideas of racial purity and admixture, as it relates to the efficacy of drugs, touches on issues related to the possibility of application of pharmaceutical technologies on a global scale.
Shaping the future and living in the present: Living a ‘good’ life with a familial heart disease (open access)
Els Geelen, Ine Van Hoyweghen and Klasien Horstman
In genetic counselling practices, individuals are explicitly encouraged to take an active stance towards their future. The premise is that, by considering their genetic risks and taking preventive measures, they have some control over their future life and health. However, it is unclear how families engaged in genetic testing actually deal with the promises of genetic test results, and how they perceive their future. This qualitative study aims to provide insight into the way in which families shape and live their lives with genetic risks. How do they navigate life with a familial heart disease? We followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 4 years. The present analysis of four of these families reveals how they make sense of the future in various ways and perceive the opportunities for control. Whereas some families strongly believe the future can be shaped in some way, others are reluctant, do not believe in or even protest against the notion that genetic testing will help them to shape their future lives. We conclude that in the pursuit of Nussbaum’s notion of the ‘good’ life, ‘shaping the future’ and ‘living in the present’ are not opposing or mutually exclusive repertoires; instead, traces of both are apparent in all four case studies.
Educating ‘cerebral subjects’: The emergence of brain talk in the Argentinean society (open access)
María Jimena Mantilla
This article focuses on both the dissemination of neuroscientific knowledge and its social implications through the analysis of a television program entitled The Enigmas of the Brain hosted by an Argentinean neuroscientist. My main concern in this article is to analyze some of the discursive uses of brain talk, that is, the many ways in which brain terminology is engaged in accounts about what the brain does and how some terms are linked together in order to create a sense of brain causality in a number of heterogeneous processes. The research that led to this article follows a qualitative design. The content of the television show was transcribed and analyzed following a content analysis strategy. This data is part of a sociological research project about the cognitive neuroscience field in Argentina. I suggest that brain talk is more about creating new words to explain and make sense of life than about communicating scientific information to a lay audience. As it is explained in the program, the purpose is to educate the public, but I argue that not in the sense of giving new information, but in the sense of producing linguistic resources that encourage the emergence of new self-narratives.
Clinician Reasoning in the Use of Cultural Formulation to Resolve Uncertainty in the Diagnosis of Psychosis
Ademola B. Adeponle, Danielle Groleau, Laurence J. Kirmayer
We examined how the process of cultural formulation contributes to diagnostic assessment of patients with psychotic disorders at a specialized Cultural Consultation Service (CCS). Specifically, we investigated the reasoning process used to resolve uncertainty of psychotic disorder diagnosis in African immigrant patients referred to the CCS for assessment of possible psychotic disorder. Qualitative thematic analysis of 23 clinical case conference transcripts was used to identify clinicians’ reasoning styles. Use of the CF appears to facilitate the emergence of a rule-governed reasoning process that involved three steps: (i) problematize the diagnosis of the intake ‘psychosis’ symptoms or behavior; (ii) elaborate explanations as to why the symptoms or behavior may or may not be psychosis; and (iii) confirm the diagnosis of psychosis or re-interpret as non-psychosis. Prototypes and exemplars drawn from previous experience in intercultural work featured prominently in clinicians’ reasoning. Prototypes were crucial in diagnostic decision-making and appear to be important sources of both clinician expertise and bias, and may need to be targeted specifically in cultural competence training.
Blood Libel Rebooted: Traditional Scapegoats, Online Media, and the H1N1 Epidemic
L. Atlani-Duault, A. Mercier, C. Rousseau, P. Guyot, J. P. Moatti
This study of comments posted on major French print and TV media websites during the H1N1 epidemic illustrates the relationship between the traditional media and social media in responding to an emerging disease. A disturbing “geography of blame” was observed suggesting the metamorphosis of the folk-devil phenomenon to the Internet. We discovered a subterranean discourse about the putative origins and “objectives” of the H1N1 virus, which was absent from the discussions in mainstream television channels and large-circulation print media. These online rumours attributed hidden motives to governments, pharmaceutical companies, and figures of Otherness that were scapegoated in the social history of previous European epidemics, notably Freemasons and Jews.
Explanatory models (EMs) are the way people explain the presence and meaning of an illness or disability and are reliant on and reflective of culturally specific values of normalcy, disability, health, and illness. EMs about autism spectrum disorder (ASD) are particularly revealing because there is no known cause, and so people can explain this disability in ways more appropriate for and useful to them. This article presents caretaker EMs about children with autistic characteristics in Kerala, India. I argue that the reliance on biological, but not genetic, causal models is reflective of the state’s high access to biomedical heath care. These EMs are used to deflect the stigma of ‘bad blood’ and reflect a nuanced relationship between stigma and biological EMs. Understanding how caretakers talk about ASD and related conditions is critical for anyone interested in engaging in crosscultural or international autism-related work.
Heroin: From Drug to Ambivalent Medicine
Birgitte Schepelern Johansen and Katrine Schepelern Johansen
This article provides an anthropological analysis of the introduction of medically prescribed heroin as part of official substance abuse treatment. While anthropological inquiries of substance abuse treatment have mainly focused on providing the users perspectives on the (ab)use or unraveling the conflicts and negotiations between users and staff, the present article argues for the merits of paying attention to the spatial dimensions of substance abuse treatment. Focusing on the spatial and material ramification of the treatment can shed a nuanced light on the still vulnerable process of altering the heroin from drug to medicine, and thereby on the attempts to settle heroin in a new practical and semantic landscape. The heroin is anchored in some powerful discourses of crime, death, and pleasure, and the analysis shows how these discourses (re-)appear in the spatial textures of the clinic, contesting the attempts to medicalize the heroin. Further, the article argues that even though the treatment aims at a marginalization of the heroin in the life of the clients, the spatial arrangements and the practices within them simultaneously enforces a centralization of the heroin, making the space for treatment highly ambivalent.
A Model for Translating Ethnography and Theory into Culturally Constructed Clinical Practices
Bonnie Kaul Nastasi, Jean J. Schensul, Stephen L. Schensul, Abelwahed Mekki-Berrada, Pertti J. Pelto, Shubhada Maitra, Ravi Verma, Niranjan Saggurti
This article describes the development of a dynamic culturally constructed clinical practice model for HIV/STI prevention, the Narrative Intervention Model (NIM), and illustrates its application in practice, within the context of a 6-year transdisciplinary research program in Mumbai, India. Theory and research from anthropology, psychology, and public health, and mixed-method ethnographic research with practitioners, patients, and community members, contributed to the articulation of the NIM for HIV/STI risk reduction and prevention among married men living in low-income communities. The NIM involves a process of negotiation of patient narratives regarding their sexual health problems and related risk factors to facilitate risk reduction. The goal of the NIM is to facilitate cognitive-behavioral change through a three-stage process of co-construction (eliciting patient narrative), deconstruction (articulating discrepancies between current and desired narrative), and reconstruction (proposing alternative narratives that facilitate risk reduction). The NIM process extends the traditional clinical approach through the integration of biological, psychological, interpersonal, and cultural factors as depicted in the patient narrative. Our work demonstrates the use of a recursive integration of research and practice to address limitations of current evidence-based intervention approaches that fail to address the diversity of cultural constructions across populations and contexts.
Coming Back to Oneself: A Case of Anoxic Brain Damage from a Phenomenological Perspective
Elisabeth L’orange Fürst
Struck by a cardiac arrest that lasted 3/4 of an hour, a 53-year-old man suddenly collapsed one day at work. The result was a serious anoxic brain damage that developed into dementia. This essay presents the process of ‘coming back to himself’ while it questions what this concept might imply. The descriptions and analyses rest upon an ethnographic study of his life, at hospitals and then at home, assisted by his wife, who is also the author of this article. Theoretically, the analysis depends on Merleau-Ponty’s phenomenology of perception and is also based on the therapeutic use of music in treating people with dementia championed by Oliver Sachs. It is argued that the field of medicine has much to learn from the anthropological method of long-term observation, as well as theories of embodiment that see the body as simultaneously being an object and a subject.
Sipping Science: The Interpretative Flexibility of Science Cafés in Denmark and Japan
Kristian H. Nielsen, Gert Balling, Tom Hope and Masaki Nakamura
Science cafés were originally conceived as an informal, dialogue-based venue for public participation in science. The first science cafés took place in the United Kingdom and France in 1997–98. Two formats—one featuring a single speaker (United Kingdom) and one with a panel of speakers and a moderator (France)—resulted from these first initiatives. Since then, science cafés have been adapted to other sociocultural contexts, and today, science cafés are being conducted in many different countries and for many different purposes. We examine the emergence and development of science cafés in Denmark and Japan with particular focus on the role of science and technology studies (STS), national contexts of science communication policy, and cultures of public participation. We find that in both countries, despite different expectations of public deliberation about science and technology, science cafés have been easily embedded in the “new” scientific governance programs (Irwin 2006). This is mainly due to institutional support in the national research systems and the involvement of STS scholars who, in their support of public participation in science and dialogue-based science communication, have advocated science cafés as a meaningful way to intervene in science-society relationships. “Sipping science” in a science café, enabling public participation in science deliberations, has interpretative flexibility, appealing to a wide variety of people and stakeholders engaged in public communication of science and technology.
In 1988, the first human baby conceived through in vitro fertilization (IVF) technology in mainland China was born at the Peking Medical College Third Hospital in Beijing. The Chinese media soon celebrated the IVF achievement for its scientific modernity, as well as for its indigenous design, which was deemed suitable for Chinese infertile women. By tracing the project director Zhang Lizhu’s professional, social, and technological experiences as the IVF project proceeded at the Third Hospital, I examine the sociopolitical justifications of the project and the technological strategies of the final IVF design. Sociopolitically, state funding for IVF in the mid-1980s, a time of governmental promulgation of the one-child policy, was predicated upon melding eugenic motives into the IVF program as a rationalization for fertility treatment. Technologically, what was claimed to be “indigenous” IVF design was actually a technical shortcut to quick success contrived to bypass challenging protocols established in developed countries. The case reveals that the IVF project and its representations in the reform era, though predominantly characterized by a sociotechnical pragmatism, still carried a hint of Maoist romanticism that celebrated worker innovation and indigenous self-reliance. Zhang’s IVF program thus offered a pivotal transitional process through which the sociotechnical imaginaries of biomedical reproductive modernity began to form in 1980s China.
This article explores the emergence of a ‘regime of hope’ in the context of oncology care, practice and research. More specifically, my focus is the emergence, since the 1970s or so, of hope scales and indexes used to metricise the emotional states of cancer patients. These usually take the form of psychometric tests designed and deployed in order to subject affective life to calculative and rational scrutiny. This article locates this within the tensions of a ‘turn’ towards the emotions in critical social science literature. Scholarship has, for instance, been anxious not to deny the embodied reality of affectivity and the emotions. But it has been equally important to recognise the extent to which emotions are discursively ordered and structured as objects and effects of power. This article charts the emergence of hope scales historically alongside wider historical forces in the metrification of life and health and more specifically the emotions. It locates hope scales in a post-war climate of individual resilience and perseverant enterprise and the significance of hope as a naturalised vitalistic attribute of biopolitical life.
Stem cell therapy in non-Western countries such as India has received a lot of attention. Apart from media reports, there are a number of social science analyses of stem cell policy, therapy, and research, their ethical implications, and impact of advertising on patients. Nevertheless, in the media reports as well as in academic studies, experiences of patients, who undertake overseas journeys for stem cell therapy, have largely been either ignored or presented reductively, often as a “false hope.” In this article, I analyze the experiences of patients and their “journeys of hope” to NuTech Mediworld, an embryonic stem cell therapy clinic in New Delhi, India. My analysis, which draws on my observations in the clinic and patients’ experiences, instead of seeking to adjudicate whether embryonic stem cell therapy in clinics such as NuTech is right or wrong, true or false, focuses on how patients navigate and contest these concerns. I utilize Gilles Deleuze and Felix Guattari’s “concepts,” lines of flight and deterritorialization, to highlight how embryonic stem cell therapy’s “political economy of hope” embodies deterritorialization of several “regimes of truth” and how these deterritorializations impact patients’ experiences.
Between hope and evidence: How community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments
Alan Petersen, Claire Tanner, and Megan Munsie
Stem cell science provides an exemplary study of the ‘management of hope’. On the one hand, raising ‘hopes’ and expectations is a seen as a necessary aspect of securing investment in promising innovative research. On the other, such hyperbole risks raising hopes to a level that may lead people to undertake undue risks, which may ultimately undermine confidence in medical research. In this context, the ‘management of hope’ thus involves the negotiation of competing claims of truth about the value and safety of particular treatments and about the trustworthiness of providers. Using Gieryn’s concept of boundary-work, this article examines the means by which this work of ‘managing hope’ is undertaken. Drawing on data collected as part of our study that investigated the perspectives of those who are consulted by patients and their carers about stem cell treatments, we explore how these community advisors – both scientists and clinicians with a stake in stem cell research and representatives from patient advocacy groups – demarcate the boundary between legitimate and illegitimate treatments. In particular, we examine how these actors rhetorically use ‘evidence’ to achieve this demarcation. We argue that analysing accounts of how advisors respond to patient enquiries about stem cell treatments offers a window for examining the workings of the politics of hope within contemporary bioscience and biomedicine. In conclusion, we emphasize the need to re-conceptualize the boundary between science and non-science so as to allow a better appreciation of the realities of health care in the age of medical travel.
Inspired by yet another prediction of snowfall tonight in Brooklyn, this month’s web roundup will briefly outline some recent looks at climate change. Over at Jacobin, Andreas Malm critiques the Anthropocene narrative’s place in discourse around climate change. Malm writes, “Species-thinking on climate change only induces paralysis. If everyone is to blame, then no one is.” At Aeon, Jedediah Purdy worries that the “Anthropocene [is set up] as a Rorschach blot for discerning what commentators think is the epochal change in the human/nature relationship.” But when the news, like this recent post on ThinkProgress, argues that “global warming creates more global warning,” what else is there to do beyond looking to the Anthropocene for answers?
Nautilus looks at archaelogy’s role in nuclear-waste management, where “archaeological analogs can inspire us to reflect more imaginatively on possible similarities and differences between distant past, far-future, and present-day worlds.” Here too the Anthropocene is central, the guide to thinking through efficacy and futurity in nuclear-waste repositories.
Shrinking natural resources worldwide also inspired quite a few publications this month. Wired recently published an edifying piece on struggles over sand, “The Deadly Global War for Sand,” that details the high-stakes culture of illegal sand mining. The infographics alone are worth the trip to FEELguide, where “R.I.P. California (1850-2016)” reviews the “world’s first major water collapse.” Is there anything we can do to fight this seemingly inevitable march toward climate collapse? Well, Upstream suggests we continue to explore recycling.
Given the unseasonable snow headed my way, it might seem like the earth isn’t getting any warmer, but MAHB’s Holly Moehler has a hot take on why snowstorms fit firmly into climate change science.
Grab a sweater and enjoy a few more links of interest:
“Anglo Saxon Remedy Kills Hospital Superbug MRSA” – NewScientist
“The Science of Near-Death Experiences” – The Atlantic
“Aliens Among Us: Extraterrestrial Anthropology” – The Geek Anthropologist
“Sex, Lives and Disability” – Mosaic
University of Michigan Press, 2014, 240 pages.
Jenell Johnson’s 2014 book American Lobotomy: A Rhetorical History provides an accessible and thoroughly enjoyable look at how an infamous medical procedure – the lobotomy – developed, was administered, initially applauded, ultimately loathed, and has had an enduring and profound impact upon medicalization of the mind and public perceptions of medical authority. Johnson expertly intertwines history and detailed biographical information from and about medical professionals and their patients, and contextualizes it all with media and cultural artifacts to synthesize a project that is both entertaining and understandable by readers with little to no prior knowledge of psychiatry, psychosurgery, or public perceptions of the two.
American Lobotomy: A Rhetorical History is aware that the cultural discourse of the lobotomy is largely grounded within “conspiracy theories, political propaganda, radio and television documentaries, autobiographies, biographies, paintings, t-shirts, jokes, and congressional hearings” (1). All of these threaten, in fact, to obscure its initial medical justifications and applications. Yet Johnson’s book and larger project of highlighting significant socio-cultural discourses surrounding medicine provide a case study and argument for why the clouds of mystery that often obscure medical practices ought to be methodically deconstructed. Therefore, while largely historical, American Lobotomy is also forward-looking in that it presents a marvelous argument for why further scholarship exploring the cultural significance of medicine is necessary, perhaps more in the contemporary information age than ever before.
American Lobotomy’s introduction situates the lobotomy as not only a medical procedure, but a mythical one as well, in that its influence upon the American medical-cultural landscape endures despite its disappearance from legitimated medical practice. Chapters one and two delve into detailed explanations of its technical development and initial applications, how it was positively received and framed by media, and even won a Nobel Prize for one of its main proponents. Chapter three complicates the traditional explanation for lobotomy’s decline, which is typically the emergence of psychopharmacology as a “non-intrusive” method for altering undesirable mental states. To this Johnson juxtaposes a persuasive counter-narrative contending that the cultural effects of the Cold War included fears of brainwashing and psychological control; as a result, a large-scale distrust of psychiatry (and the lobotomy in particular) emerged. Chapter four articulates the “return” of lobotomy to the medical forefront when new psychosurgeries emerged during the mid-twentieth century, and here Johnson describes how the activists opposing them rhetorically collapsed psychosurgery with lobotomy, and their practitioner doctors to lobotomists, a strategy that clearly worked to their benefit.
The fifth chapter delves into an explanation of contemporary deep brain stimulation procedures and how they have become rhetorically positioned as different than lobotomies, while chapter six describes the infamous Trans-Allegheny Lunatic Asylum, a contemporary tourist attraction that Johnson herself visits. Here we read about the performative nature of the lobotomy within the present cultural arena, as it has become anthologized within film and horror stories as a warning about medicine, monsters, and medical malpractice. Like chapter six, American Lobotomy’s conclusion is one in which Johnson plays a key role: it contains personal reflections on the work, archival and personal, that was involved in this project, and Johnson’s own haunting realization that perhaps not as much has changed in the world of psychiatry and medicine as we may try to believe.
Methodologically Johnson’s use of rhetorical history neither detracts nor distracts from her project itself. Rhetorical history is a mode of criticism that advocates historicizing the object of critique, in this case the lobotomy, in order to better understand its cultural significance. While the content of the book itself could, I believe, still be informative and enjoyable without any sort of methodological rigor, the inclusion of the rhetorical perspective adds a theoretical dimension that is comprehensible across disciplines and adds increased interdisciplinary appeal to the project.
A potential critique of American Lobotomy is that it attempts to do too much: provide an all-encompassing history of a medical procedure and contextualize these findings from a socio-cultural perspective. Indeed, it is quite a large task to accomplish in fewer than two hundred pages. Yet to this I would respond that medicine and science cannot be divested from the social and cultural milieu in which they emerge and evolve, and to argue that such a thing is even within the realm of possibility is to blind oneself to the importance of social constructions of medicine, and medicine’s constructions of the social, particularly social order, which the lobotomy itself was initially designed to maintain and practiced upon those who threatened its delicate fabric.
All in all American Lobotomy manages to be at once convincing and entertaining, an easy read despite the sometimes dark nature of its subject matter, and highly recommended for anyone interested in the relationship between medicine and culture.
Emma Bedor is a PhD student in the department of Communication Studies at the University of Minnesota. Her research examines intersections of media, medicine, bioethics, and social justice.