Rutgers University Press, 2015, 216 pages
An Indian coffee shop franchise advertises their practice of hiring deaf baristas – “silent brewmasters” – to work their espresso machines. A Bangalore tech company boasts that it hires “physically challenged” workers only (118-121). Meanwhile, deaf adults in Bangalore complain that adult education at several non-profits is insufficient to really make a difference given disability stigma and the communication barriers that deaf adults face. What course of global events brought about a situation in which employing deaf workers constitutes a kind of value-making project for corporate entities? In the multilingual world of 21st century Bangalore, what does it mean – socially, relationally, vocationally, personally – to be a deaf adult who signs to communicate?
Recent years have brought a new surge of ethnographic attention to disability as a global category, and to the social configurations and lived experiences of disability and disability stigma across global cultural contexts (for example, recent posts on this blog, including those by Elizabeth Lewis and Seth Messinger). Medical anthropology has hung its hat on the capacity of illness, disease, and practices of health and healing to at once illuminate and describe the broader social and political context, and, to center the voices of populations whose perspectives are rarely the focus of public discourse. Meanwhile, sensory ethnography and neuroanthropology have observed that bodily ways of knowing and coming to know are not nearly as stable as previous generations of social and behavioral science may have let on. What happens when ethnography values sensory difference as a starting point for inquiry?
Medical Anthropologist (and Somatosphere contributor) Michele Friedner’s ethnographic account of the lives of lower-upper-middle-class deaf adults living in Bangalore, India finds multiplicity and confluence in several threads of theory and thought that have heretofore rarely been combined.
Friedner writes as a medical anthropologist, putting deaf studies and disability theory in conversation with a critical ethnography of the global neoliberal workplace. Valuing Deaf Worlds in India speaks to a range of disciplinary debates, from the anthropology of value (cf. special issue of HAU) to modernity to queer theory. This book, like others before it (e.g. Nakamura’s Deaf in Japan), demonstrates that attention to deaf experience has implications for understanding broader social worlds. Often in anthropology, ethnography of deaf communities is approached with a linguistic anthropology commitment to examining signed languages; while this book attends to questions of languages, signed and spoken, Friedner instead makes use of stigma and disability theory. For the Somatosphere audience this work offers a sustained scholarly attention to sensory and bodily difference through ethnographic accounts of social experience. It culturally situates category of deafness as a global development discourse at play in corporate, NGO, governmental, and kinship settings in contemporary India.
Friedner offers several key theoretical innovations. Chiefly, she offers the phrase deaf development. Drawing on the multiplicity of discursive lives of the word “development” she posits a deaf development that finds confluence between the personal vocational, emotional, social, and spiritual development of deaf people, and the global economic development rhetoric that circulates in Bangalore. Deaf people in Bangalore, she argues, look to ways to support other deaf people in becoming socially, morally, politically, and economically savvy. There is a focus on opportunities to create community and social value. She writes, “My deaf friends defined deaf development as the emergence of deaf-centered, and therefore sign-language-centered, structures and institutions that help deaf people develop language, educational, economic, social, and moral skills for living the world as both a member of deaf sociality and part of a larger normal world” (2). Throughout the text, she considers deaf development as both an ethnographically rooted local concept, and as an analytic and theoretical tool: what kinds of social opportunities make deaf development possible? How does development on a global political economic scale, find resonance through deaf experience with development as a concept in educational and rehabilitation settings? How is the project to modernity expressed through the production of a deaf identity?
Like many ethnographers with an interest in disability justice, Friedner finds that her own categories and political commitments are challenged by local paradigms. Her deaf interlocutors in Bangalore, unlike deaf colleagues in the US, describe themselves as deaf, and hearing people as normal. Friedner describes the sticky process of working with/in/through indigenous binaries, documenting how categories function, while at the same time maintaining her hold on a critique of normativity (12-14). She departs from the politics of capitalizing the word Deaf as a means of signifying a cultural group, and, following her interlocutors, uses deafs as a plural noun. In this way she centers the linguistic practices of interlocutors, while engaging the theory of deaf studies even as she avoids prescriptives for politically correct language.
Structure of the Text
In the introduction, Friedner describes her theoretical contribution, and introduces the reader to the core concerns of ethnography of deaf experience. She situates her interlocutors as mostly lower-middle to upper-middle class adults in their 20s and 30s, and describes the varied spoken languages in Bangalore and the uneven access that deaf adults have had to learning sign and participating in signing communities. She contrasts Bangalore-variety Indian Sign Language (BISL) with other Indian Sign Languages and with British Sign Language and American Sign Language (ASL). She situates signing in Bangalore vis-à-vis the competing histories of oral deaf education (in which deaf children are taught to read lips and speak but not to sign) with signed language education opportunities for children and adults in Bangalore (17; 29). Friedner describes her own positionality as a US citizen raised in an oral tradition who came to ASL later in life, and, in the field, acquire BISL as part of her research (26).
In chapter one, Friedner focuses on the relationships of deaf adults in Bangalore with their families of origin. She describes the work of doing research in a variety of languages, and the dynamics of mis-communication that transpire between family members who sign a little or don’t sign at all and their deaf adult children and siblings. It is in this context of elaborated near-communication, she argues, that deaf adults are motivated to take what she dubs a deaf turn, moving into a social identity articulated by relationships with other sign language users, and social opportunities that center signing as the primary and valued mode of communication.
In chapter two, she describes how churches in Bangalore are one of the core spaces of deaf sociality, and the historical engagement of religious institutions in deaf development in the region. In chapter three, circulation as vocation, she describes vocational training centers with programing for deaf adults as another of the key social spaces through which deaf adults circulate. However, she argues, deaf adults frequently move through these training programs without actual resulting employment, so that training becomes their vocation, with deaf adults enrolling in one training program after another, a perpetual process of deaf development that never arrives at completion. The NGO-organized trainings that Friedner describes will sound familiar to ethnographers who have investigated disability experience in a wide array of cultural settings. At best, the trainings really do lead to employment; at worst, they offer what interlocutors describe to Friedner as half half half, or incomplete and middling knowledge (contracted with the deep knowledge that Bangalore deaf young adults seek), yet offer opportunities for socializing and meeting people.
Bangalore is a key node in India’s tech and IT industry. In chapter four, Deaf Bodies, Corporate Bodies, Friedner describes the various ways that Bangalore tech companies seek out and employ deaf workers. She relates the history of Indian legislation regarding hiring disabled workers, and the production of social discourses that situate deaf works as offering “added value” to offices and companies, allegedly bringing diversity, loyalty, and specialized skills (106), and positive affective attachments or a sense of camaraderie (115-116). She relates the daily dynamics of a BISL deaf working group in one corporate IT office, and their strange status as symbolically accepted and integrated into the broader workplace, while comprising a distinct and linguistically separate working unit and social collective. Because of this dynamic, deaf workers were often treated as a uniform group by their hearing coworkers and by the corporation – even though, in reality, there was a great deal of variation in fluency and skill in BISL and in work skills amongst the group (111). Even where disability studies has observed that capitalist production has at once produced new kinds of disablement, and produced a particular stigma for disabled people as unable to work, in fact, Friedner argues, there is a particular kind of value created when a company actively seeks to employ otherwise stigmatized deaf workers (121-123). In chapter five, Friedner describes a ubiquitous element of deaf social life in Bangalore, participation or recruitment for participation in multilevel marketing businesses (pyramid schemes) that are popular throughout India. These businesses offer a mode of potential distinction for deaf people seeking to build their social networks and theoretically to gain social skills; the goals of the business model, to meet more deaf people and to facilitate their joining the business, dovetail with notions of deaf development, offering both financial gain and social distinction.
Friedner’s conclusion briefly revisits some of the individual anecdotes introduced earlier in the text, and poses questions about deaf futures. With new global recommendations in the UN Convention on the Rights of People with Disabilities, and the trend toward valuing deaf workers that she documents, Friedner situates her ethnographic account as documenting one moment in time, a phase in deaf development.
Medical anthropologists will find this text compelling for academic study, and useful for undergraduate courses either read as whole or in excerpted chapters. It would be particularly useful to introduce a critical approach to global neoliberalisms at the same time that students will encounter critical deaf/disability studies. Those looking for an account of suffering, however, should look elsewhere: the disability advocacy politics of this book come through clearly – this is not “suffering porn” but rather a careful ethnographic account of how seemingly biological category – deafness – creates particular social realities. Friedner does not investigate “the poorest of the poor” (10), but rather those who have or seek jobs in government or corporate positions.
The text could be read in conversation with a variety of existing literature, from global ethnography of disability (e.g. Kohrman; Nakamura; Phillips; Ingstad and Whyte), to ethnography of contemporary India (e.g. Chua; Cohen), to ethnographic accounts of the 21st century tech workplace (e.g. Aneesh; Irani). At the core, the work examines how contemporary Indians produce themselves as modern subjects through education, sociality, language, and labor.
In Valuing Deaf Worlds in Urban India Friedner has crafted an ethnographic monograph that is at once a compelling narrative with vivid descriptions, and a carefully researched and powerfully structured theoretical assertion of how deaf identities are multiple, global, and valuable.
Aneesh, A. 2006. Virtual Migration: The Programming of Globalization. Durham: Duke University Press.
Chua, Jocelyn Lim. 2014. In Pursuit of the Good Life: Aspiration and Suicide in Globalizing South India. Berkeley: University of California Press.
Cohen, Lawrence. 1998. No Aging in India : Alzheimer’s, the Bad Family, and Other Modern Things. Berkeley: University of California Press.
Ingstad, Benedicte, and Susan Whyte. 1995. Disability and Culture. Berkeley: University of California Press.
——. 2007. Disability in Local and Global Worlds. Berkeley: University of California Press.
Irani, Lilly. 2015. “Hackathons and the Making of Entrepreneurial Citizenship.” Science, Technology & Human Values,
Kohrman, Matthew. 2005. Bodies of Difference : Experiences of Disability and Institutional Advocacy in the Making of Modern China. Berkeley: University of California Press.
Nakamura, Karen. 2006. Deaf in Japan: Signing and the Politics of Identity. Ithaca: Cornell University Press.
Otto, Ton and Rane Willerslev, eds. 2013. Special Issue: Value as Theory. HAU: Journal of Ethnographic Theory. 3:1.
Phillips, Sarah. 2011. Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington: Indiana University Press.
Carlo Caduff’s The Pandemic Perhaps: Dramatic Events in a Public Culture of Danger (University of California Press, 2015) is a story of the influenza pandemic that never was. Caduff tells this story from an American perspective through his encounters with scientists and other actors who engage in the august work of “preparedness,” but in doing so, often draw upon and amplify an apocalyptic imaginary that doubtless shapes scientific and public priorities (and fears). With lucid and critical detail Caduff shows how forms of prophecy (new and old) push catastrophe towards further and further horizons.
We have an incredible group of commentaries on The Pandemic Perhaps. We hope you enjoy.
Reproducing the Magic: Uncertain Science and Reason+
University of Cambridge
Plotting Global Health Attention through Pandemics
King’s College London
Choice and the assigning of value in the practices and crafting of life-giving work
In healthy birthing initiatives described by, among others, the World Health Organization, emphasis has been placed on the importance of ‘the golden trio’: vaginal birth, breastfeeding and immediate skin to skin contact after birth. These three experiences are said to seed a baby’s immune system with good bacteria, preventing diseases from allergies through to diabetes and obesity, and facilitating neuroplasticity and brain development. In resource-poor countries, these are cheap and effective public health interventions. Despite these benefits, South Africa’s middle class caesarean section rate is extremely high.
My research is part of the University of Cape Town’s First 1000 days research cohort led by Fiona Ross and focuses on midwife assisted birth. While the WHO recommends that a country should not have a caesarean-section rate higher than 10-15% of all births, South Africa has extremely high rates of c-section birth, largely testament to the highly medicalized private health care system enjoyed by the rich. In some private sector hospitals, particularly in metro centers, the rates vary between 70% and 95%, despite a strong push by the state for so-called ‘natural delivery’ (vaginal birth). Given the prevalence of c-sections in the private sector, and that sector’s broad refusal of midwife attended (rather than obs/gynae attended) birth, middle class women who want a vaginal birth find it difficult to have the ‘natural birth of their dreams’. Private midwife consultation is one of the few options available to them. With a powerful rhetoric encouraging c-sections in the South African context (obstetricians have extremely high medical malpractice insurance fees with increasing legal suits, convenience for doctor and patient in choosing a birth date and the perception that c-sections are safer), women who chose vaginal birth with a midwife are making important medical choices that they understand in political terms.
I’ve spent the last twelve months working with midwives from a private midwifery practice in Cape Town, South Africa. The research has involved hundreds of hours of observations of consultations (800 ‘consults’ in total), training as a doula (birth attendant), attendance at births, interviews, participating in birth preparation classes, visiting women in their homes and attending positive birth movement groups. In the course of this work, I have learned that women seeking midwife-attended births feel pressure to ‘fight’ for their births of choice. These are framed in terms of the benefits of ‘natural’ birth – benefits about which women have educated themselves – and often include not only practical birthing preparations but hypnobirthing, visualization, birth plans, using particular positions to get baby into an optimal birthing position and exercise and yoga for facilitating easier deliveries. A number of women who seek midwife attended births do so with the intention of home-birthing or water-birthing. Among those who seek midwife attended births in hospital, there is a strong desire to be accompanied by a knowing but non-‘invasive’ other. When they succeeded in ‘naturally’ birthing their babies, the women I worked with felt an immense sense of achievement. Marian, an expat living in Cape Town who had researched her options for vaginal birth in South Africa explained:
“I just look at it as, I know what it feels like to have that endorphin kick after you’ve pushed yourself physically and I can only imagine, doing this will be so much more than that – the hormones, physically, mentally knowing I’ve accomplished this and the hormones I know that come with it, I think that’s what I’m excited about.”
Marian had imagined her birth as akin to running a marathon. She believed she would feel a sense of achievement, having pushed her body in an extreme experience. As it turned out, Marian did not get the ‘natural’ homebirth she had wanted. Her baby was breech and after her midwife had managed to turn the baby into birthing position, Marian went past her due date by 10 days and needed to be induced. At this point, hospital birth became her only option, but she still hoped for a ‘natural birth’ in a private hospital. That was not to be. Marian labored for several hours in hospital but after little progress, her midwife suggested a caesarean-section, to which Marian consented. Marian’s midwife explained to me that she had tried to make the decision to have a caesarean as consultative as possible, keeping Marian and her husband informed along the way and discussing the options as the couple’s plans quickly unravelled. The midwife also explained that Marian needed to recognize that her c-section was truly necessary, as the midwives encouraged vaginal birth as far as possible. Six weeks later, I visited her and we discussed the birth. Marian said she was loving motherhood but she had been ‘down’ in the first two weeks after the birth, feeling disappointed at not getting the ‘endorphin rush’ and all the benefits she understood to be part of vaginal birth. Marian explained how she had cried for a few days and experienced some sense of failure, having not ‘accomplished’ a vaginal birth.
For women using private sector healthcare, but wanting a vaginal birth, c-section has become commonplace. Women who chose midwife-led birth felt that their obstetricians lied to them, giving them reasons for c-sections they believed to be invalid. They described women as being ‘cheated’ of their rights as women. They described doctors as ‘robbing’ women of their natural birth and held firm to a binary between ‘natural birth’, midwife attended, and ‘hospital birth’, highly technicized and attended by obstetricians. Whether or not these perceptions were true (often they were not), women placed emphasis on ‘natural’ birth, an experience they saw themselves as ‘designed’ to do.
The separation of intervention-free birth and medicalized, technocratic birth that women set up was not as stark as women imagined. Indeed, their distinction between ‘natural’ and ‘biomedical’ and their equation of midwifery with the former is ironic. In the South African context, midwives offering labour care are biomedically trained, had all worked in large maternity hospitals and all insisted on obstetric back-up. The midwives used ‘intervention’ when necessary and adhered to medicalized notions of pregnancy and labour in time (antenatal checks, safe periods of time to labour), physiological checks and monitoring of baby. Yet women and midwives still understood natural birth as opposed to technocratic birth and because they understood themselves to be fighting against a c-section culture, when they did indeed require a caesarean section, they either imagined themselves being or were enormously disappointed. As women spoke of their feelings on birth, I was bearing witness to the production of a particular set of affects. Some of these affects were feelings, in the form of a rush of relief and elation at giving birth ‘naturally’, others were imagined physiological processes and the associated benefits: a kick of endorphins as women pushed their babies, their bodies flooded with oxytocin, the ‘love hormone’.
A combination of the South African private sector that makes c-section the norm rather than the exception, recent research on the benefits of vaginal birth and a powerful mythology that underpins women’s understandings of natural birth, merged to produce a moment in which women seeking midwives, saw natural birth as the ‘right way’ to birth. They crafted a narrative in which they would feel a sense of achievement, would give their babies a ‘head start’ (an ironic phrase if ever there was one), ‘doing as nature intended’, making them ‘good mothers’. Middle class women read extensively and understood physiology, pregnancy and birth well. Women were knowing mothers, able to talk about birth positions, hormones and the procedures of birth. The knowing mother quickly turned to the good mother, who needed to birth the ‘right’ way for her baby. As Waltz (2014) says, increasingly the good mother is equated with intensive mothering and motherhood becomes a project.
I argue that a strong myth of natural birth exists in South Africa’s private birthing sector. Midwives offered hands-on, continuity of care with a ‘conducive’ birthing environment; yet midwives and their clients did not acknowledge those practices as forms of intervention: the midwife’s support, her creation of a low-lit, quiet and gentle atmosphere for birth and her practical positioning of women, pushing on women’s hips to increase the space in the pelvis. They based their support and desire for a version of vaginal (natural) birth on scientific evidence based practice, including new information about vaginal microbiomes and the effects on infant’s immune systems both in the short and long term. In their model, midwifery was not an ‘intervention’. They argued that they supported a phenomenon that occurred ‘naturally’ with many scientifically proven benefits. They did not support the (similarly) scientifically produced, medicalized versions of birth that were understood by evidence-based studies as unbeneficial when unnecessary. The myth worked to uphold a powerful understanding of the natural. The myth set up a discourse in which choice was the axis upon which birth was approached by South African middle class women: choosing to birth vaginally or surgically. Therefore, when women were unable to have a particular version of birth, because birth was framed within a discourse of choice, women experienced feelings of failure and being a ‘bad’ mother. Fiona Ross, Miriam Waltz, Michelle Pentecost and Min’enhle Ncube’s research have shown the ways that the good mother rhetoric has grown in South Africa for pregnant women and new mothers breastfeeding and bottle feeding. As Waltz (2014) explains, the project of mothering is based in a mode of mothering intensively being equated with good mothering. How women give birth has become part of this project.
The cultural model of the good mother experienced by many South African pregnant women (working class public health users experience the good mother rhetoric too, in different ways), created a scenario where the work of independent midwives was to tailor what and how much women learned in pregnancy, as midwives encouraged women to be selective in who they listened to, and teaching women what they needed to know and what fell under the bracket of unnecessary worry. Midwives also had to tend to women’s expectations of birth, making them realistic to the unpredictability of birth, trying to offset senses of achievement and failure. Working in this context, it is important to think through the role of the midwife as a facilitator of particular versions of birth in a high c-section context, but more so, as a mediator of varying intersections and rhetoric that place women in particular roles and positions in their communities.
Framed as a choice, the binary of the natural/surgical birth is maintained. It produces particular effects, affects and dispositions. For women who do not get their desired (natural) birth, the effects can be devastating: women having caesarean sections are framed as having failed in a critical maternal role. Given the private sector’s institutional push towards c-sections women desiring vaginal birth feel the need to fight for this version of birth. Underlying the harmonious model presented by midwives and their clients is a combative mode.
Thinking about how the cultural modes that frame motherhood, enables a critical conversation that locates the maternal in the midst of institutional, political, economic, social and cultural arrangements and the affects of economies these produce. Birthing emerges as central to ideas about motherhood, and motherhood becomes an experience in which others judge and assign value in the practices and crafting of life-giving work.
Gibbons, L. Belizan, J. Lauer, J. Betran, A. Merialdi, M. Althabe, F. 2010. The global numbers and costs of additionally needed and unnecessary caesarean sections performed per year: Overuse as a barrier to universal coverage. World Health Report: Background paper (30). World Health Organisation.
Jennifer Rogerson is a PhD student at the University of Cape Town, researching the practices of midwifery in relation to care. She is interested in exploring, alongside the political economy of service distribution, the political economy of affect in South African maternal health care.
“When It’s Time to Vote, Don’t Boycott Academics – Cut the Purse-strings” raises important questions about the power of economic divestment in the struggle for Palestinian rights. In so doing, however, it presents us with not one, but two false choices. First, it tells us to pursue economic divestment instead of academic boycott. Why is this an either/or, when the two are mutually reinforcing parts of a common struggle? And why assume we are not also advocating economic divestment in other arenas in which we work? Second, it presents the AAA with a meaningless choice between an action that is within its power as an academic association (academic boycott) and one that isn’t (ending US aid to Israel).
At Columbia University, the first act of collective protest against the Israeli government was organized in 2001, a year after the second intifada had begun, and it was a call on the university to divest from U.S. companies that sold military hardware to the Israeli state. A few months ago, a student-led initiative, with faculty support, renewed and broadened that call for economic divestment. Likewise, faculty and students at other universities have taken up the divestment call (for example, faculty at Princeton in 2015). Economic divestment is a central strategy of BDS, and it has had some important successes of late, especially in Europe. In fact, lobbying and directing pressure at Congress is and always has been part of the strategy of the movement for peace and justice in Israel/Palestine.
There have been years of organizing efforts to educate Congress and move it to put economic and political pressure on Israel. To claim that we are failing to focus on the real game in town is to ignore decades of political work that has by and large failed. The academic boycott is an integral part of both educating and pressuring Congress by sparking a conversation about Israel and Palestine that has been impossible in this country. And the effects of the strategic choice of academic boycott have been remarkable: It has brought critical conversation into the U.S. public domain in a way I have never seen before. Moreover, trading the academic boycott—a direct action by the American Anthropological Association designed to continue to shake up the public conversation—for a call that the AAA merely send letters to Congress protesting U.S. economic and military aid ignores the context of who we are and the institutional context within which we are acting: As anthropologists, we are demanding that our professional organization actually does something and that it does it in our name.
This is not a matter of taking our eyes off the prize. The pushback that the Israeli government, the major American Zionist institutions, members of Congress, and private funders have brought to bear on this campaign says a lot: This is proving to be an effective strategy; it is disrupting the long hegemonic narrative about Israel and Palestine in the U.S. public domain. Perhaps, in so doing, it is forging the way for the possibility of successful economic divestment campaigns to come.
Are there anthropologists who have not signed onto the boycott who have experienced hostility, or who are afraid to speak? There may well be. But to focus on such instances is to ignore the overwhelming evidence of the systematic hostility and discrimination that those of us who have been critical of Israel in our work—and those who have supported the boycott, as students or as faculty—have faced. This is not just about our discipline. This is about the university structure as a whole, and the influence wielded against critical speech on Israel/Palestine by those within and beyond. There is no Campus Watch, or Canary Mission that tracks the speech and writings of Israel’s supporters, and whose explicit aim is to block graduate students from getting jobs and faculty from getting tenure. There is no university president who has made claims about anti-boycott anthropologists equivalent to Larry Summer’s argument that the call for divestment is anti-Semitic, “in effect if not intent.” And there is no consortium of university presidents backing our call to boycott Israeli institutions, no equivalent to the recent letter sent by UC President Janet Napolitano and all ten of the Chancellors of the University of California system to the American Anthropological Association to express their dismay at the impending vote. In other words, there is no symmetry here and perhaps, as anthropologists, that is the operation of power to which we should attend.
Are we punishing colleagues who do not support the boycott? Are we dividing the discipline, making it a more acrimonious place? I have colleagues who have and have not signed onto the boycott, and I certainly don’t consider their stance on the boycott a political litmus test. I have students who do and do not support the boycott (and many whose position I don’t know), and I certainly don’t punish or reward any of them for their particular stance. (You are free to ask around if you please). By way of contrast, I have pushed back hard against those driving the opposition to the boycott. I have done so not simply because we disagree but because of their refusal to acknowledge what it is we are actually asking for, and their misrepresentation of BDS and its goals (claiming that it is actually a violent movement, that its end game is a one state solution, that there is a whiff or even the stench of anti-Semitism in our call). Those are politically pernicious accusations, and they must be responded to. Does that create acrimony in our discipline? Perhaps. But perhaps there are issues—and moments—at which what is at stake is more important than disciplinary peace. No doubt, for signatories of the letter calling on us to “cut the purse strings” instead, there are issues over which it might be worth producing disagreement among colleagues, acrimony even. The real question is this: Is the “Question of Palestine,” to quote Edward Said, important and urgent enough? For me, it is.
 See https://www.youtube.com/watch?v=e3Ii2kY6p7Q; https://www.youtube.com/watch?v=NxaJ5FMemWY; http://www.huffingtonpost.com/richard-a-shweder/targeting-the-israeli-aca_b_9540974.html; For a critique of the anti-Semitism charge, see http://savageminds.org/2016/04/22/jaccuse-how-not-to-have-a-political-debate-about-bds/
Welcome to the first stack of ‘In the Journals’ for April! It’s a bumper crop, so find a cosy corner and some coffee to comb through it all. Happy reading!
Eileen Moyer and Vinh-Kim Nguyen
(Excerpt from editorial )
The diverse contributions that make up this issue of MAT, we gingerly suggest, could initiate a provocative conversation in response to the following question: what if biomedicine, or to be more precise ‘biomedicalization’(Clarke 2003), is to the twenty-first century as industrialization was to the nineteenth? …. The question of whether biomedicalization will be the twenty-first-century equivalent to industrialization sprang to mind in reading Catherine Waldby and Melinda Cooper’s important book, Clinical Labor, reviewed in this issue by Neil Singh (and is also raised by another important volume, Lively Capital, edited by Kaushik Sunder Rajan). Singh underlines the central argument of the book: surrogacy, participation in clinical trials, donation of body parts, and other practices enabled by a global regime of biomedicine can be theorized together as forms of clinical labour that are derived from the body’s inherent potential for regeneration. There is, in this, a parallel to the assemblage of machines in factories, which enabled the emergence of a working class united by their engagement in industrial labour. Industrialization signed the transformation of the relationship between consciousness, embodiment, and human engagement with the material world, increasingly subsumed into raw material for transformation through industrialized labour into the commodity form.
Clinical trials are a fundamental stage in a drug’s biography for they provide the standard by which a molecule’s therapeutic status is determined. Through this process of experimentation, a pharmaceutical substance acquires a new competence – that of treating or preventing disease. This article examines experimentation in drug production, and shows how this complex apparatus not only transforms the status of the molecule but also produces new understandings of and expectations for how people should act. Drawing upon observation of a trial of prophylactic prevention of mother-to-child transmission of HIV, in Ouagadougou, Burkina Faso, I show that the production of this biomedical technology – the therapeutic drug – is coupled with the production of its users. In so doing, I challenge the conception of drugs as bounded objects and instead offer the concept of ‘biomedical package’, which highlights the social relations that characterise it.
Don Seeman, Iman Roushdy-Hammady, Annie Hardison-Moody, Winnifred W. Thompson, Laura M. Gaydos, Carol J. Rowland Hogue
Within public health and medical anthropology research, the study of women’s agency in reproductive decision making often neglects the role of religion and women’s spirituality. This article is based on ethnographic research conducted at a shelter for homeless (mostly African American) mothers in the southeastern United States. We explore the inadequacy of rational choice models that emphasize intentionality and planning, which our research shows are in tension with the vernacular religious and moral ethos of pregnancy as a ‘blessing’ or unplanned gift. Our findings confirm that young and disadvantaged women may view pregnancy and motherhood as opportunities to improve their lives in ways that mediate against their acceptance of family planning models. For these women, the notion of ‘blessing’ also reflects an acceptance of contingency and indeterminacy as central to the reproductive experience. We also question the increasingly popular distinction between ‘religion’ and ‘spirituality’ in contemporary public health.
In Native North America, clinical/healing spaces are caught up in political struggles for autonomy. In Canada’s Northwest Territories, where rates of alcohol consumption are substantially higher than national averages, there are ongoing attempts to align therapeutic practice with traditional Aboriginal modes of healing and well-being. This Think Piece traces the ‘therapeutic trajectory’ of alcohol treatment in and out of this subarctic region. I show how the language of ‘evidence-based practice’ affords both gains and losses with regard to the assertion of collective identity and values vis-à-vis the state. Against the backdrop of the closure of the region’s sole residential treatment program, I contrast a conversation with a clinician responsible for implementing culture-based programs with the experiences of Destiny, a young Dene woman who, in the absence of local treatment options, spends time in clinics some one thousand kilometers away from her home community. In her movements away from the place to which she is indigenous, Destiny activates different forms of Aboriginal care than those intended by state and community actors. These divergent perspectives speak to the enmeshment of addiction with the perils and politics of liberal forms of recognition.
This Think Piece reflects on the desire to maintain an existing illness, based on the narratives of individuals diagnosed with anorexia. Informants’ descriptions of anorexia as a ‘friend’ that may ‘look after you’ problematize taken-for-granted boundaries between health and harm, illness and care. Framed as a precarious and painful solution to distress, the illness is described as a way in which to live through, and move beyond, the present moment. It emerges as an ambivalent modality of self-care that may be actively maintained. Such accounts invite consideration of what desire is and how it acts in the day-to-day lives of individuals with anorexia. By engaging with these questions, the Think Piece asks how such desire might be ethically approached, read, and attended to, and what challenges it poses to habitual ways of thinking and doing in medical anthropology.
These photo essays speak to the conditions of homelessness in several urban settings in North America in rich, imaginative ways. Through intricate mosaics of photographs and text, the four essays convey singular aspects of living on the streets, in single-room-occupancy hotels (SROs), and in makeshift camps. They are embedded with a complex array of ideas and perspectives, which might be best attended to through teasing out certain key concepts and orientations – articulating a glossary of perceptions, as it were.
Drawing on fieldwork in independent Samoa, in this article, I analyze the temporal dimensions of evangelical Christian healing of metabolic disorders. I explore how those suffering with metabolic disorders draw from multiple time-based notions of healing, drawing attention to the limits of biomedicine in contrast with the effectiveness of Divine healing. By simultaneously engaging evangelical and biomedical temporalities, I argue that evangelical Christians create wellness despite sickness and, in turn, re-signify chronic suffering as a long-term process of Christian healing. Positioning biomedical temporality and evangelical temporality as parallel yet distinctive ways of practicing healing, therefore, influences health care choices.
Healing rituals can be understood in terms of configurations of two states of consciousness—a culturally elaborated everyday waking consciousness, and an enhanced and culturally elaborated state of consciousness. Two healing rituals performed by the ethnic Kachin in Southwest China differentiate these two states of consciousness in their theories of life and death. The first ritual, animal sacrifice, employs the ordinary consciousness, including will and expectation, of participants through the enhanced state of consciousness of the ritual officiant. The second, Christian prayer, utilizes the enhanced consciousness of Christian Congregation to achieve psychic transformation. These two rituals maneuver different configurations of the two states of consciousness in achieving healing efficacy.
Following a national policy shift toward universal access to antiretroviral therapy (ART) in Malawi, hospitals and clinics around the country made major changes to enable the provision of ART. In this already resource-limited environment, the provision of ART brought new health care delivery challenges to bear on both patients and health care professionals. The substance and form of these local interventions are affected by a multilayered global context. Drawing on fieldwork in an antiretroviral clinic in rural Malawi, this article discusses the daily implications of providing and receiving care in the context of a massive global shift in health policy, and argues that in order to fully understand the process of service rollout in all its complexity, care should be explored not only from the patients’ perspective but also from that of local and international health care professionals and policymakers.
International retirement migration is often conflated with the generic emergence of a new stage in the life course, the third age. I describe how well-travelled, globally orientated retirees are drawn to and experience biomedical provision in ‘risky’ retirement destinations. Drawing on ethnographic research in Ubud, Bali, Indonesia, I consider how older Western residents shape, share, and manage their health concerns in light of an Indonesian biomedical system that is transforming in the context of modern medical provision and an emerging retirement industry. Building on Rose and Novas’s notion of biological citizenship, I illustrate the ways in which Western retirees engage with multiple biomedical realities built around localized, symbolic distinctions between ‘hospital’ and ‘doctor,’ immigration frameworks, the transregional context of medical tourism, and broader concerns relating to change and overdevelopment in Ubud and Bali.
Fiona Scorgie, Jennifer Foster, Jonathan Stadler, Thokozile Phiri, Laura Hoppenjans, Helen Rees and Nancy Muller
Little is known about how menstruation is managed in low-income settings and whether existing sanitation systems meet women’s needs. Using the ‘Photovoice’ method with 21 women in participatory workshops and in-depth interviews, we collected data on menstrual hygiene management in three sites in Durban, South Africa. All women reported using disposable sanitary pads. Although they were aware that disposable pads were nonbiodegradable, incompatible with waterborne flush systems, and fill up pit latrines, they had little experience with reusable products. Considerable energy was devoted to concealing and containing ‘menstrual waste,’ and women expressed concern about inadequate privacy during menstruation. All sites lacked discreet disposal options and reliable water access, while outdoor sanitation facilities were considered unsafe. Findings highlight the need for advocacy to improve safety and privacy of facilities for women in this setting.
“Citizenship” is a term from political theory. The term has moved from the relationship between the individual and the state toward addressing the position of ‘others’ in society. Here, I am concerned with people with long-term mental health problems. I explore the possibilities of ethnographically studying this rather more cultural understanding of citizenship with the use of the concept of relational citizenship, attending to people who leave Dutch institutions for mental health care. Relational citizenship assumes that people become citizens through interactions, whereby they create particular relations and social spaces. Rather than studying the citizen as a particular individual, citizenship becomes a matter of sociality. In this article, I consider what social spaces these relationships create and what values and mechanisms keep people together. I argue that the notion of neighborhood as a form of community, although built implicitly or explicitly into mental health care policy, is no longer the most plausible model to understand social spaces.
In the growing number of publications in medical anthropology about sub-Saharan Africa, there is a tendency to tell a single story of medicine, health, and health-seeking behavior. The heavy reliance on telling this singular story means that there is very little exposure to other stories. In this article, I draw on five books published in the past five years to illustrate the various components that make up this dominant narrative. I then provide examples of two accounts about medicine, health, and health-seeking behavior in Africa that deviate from this dominant narrative, in order to show the themes that alternative accounts have foregrounded. Ultimately, I make a plea to medical anthropologists to be mindful of the existence of this singular story and to resist the tendency to use its components as scaffolding in their accounts of medicine, health, and health-seeking behavior in Africa.
Kirsten Bell and Judith Green
(Excerpt in lieu of abstract)
Read any issue of Critical Public Health and you’re more likely than not to see the concept of ‘neoliberalism’ invoked at some point. Inputting it as a keyword in the jour- nal brings up 93 papers, and it features prominently in the title of three articles on our ‘most cited’ list: ‘Understanding health promotion in a neoliberal climate and the mak- ing of health conscious citizens’ (Ayo, 2012), ‘Neoliberalism, public health, and the moral perils of fatness’ (LeBesco, 2011) and ‘Aboriginal mothering, FAS prevention and the contestations of neoliberal citizenship’ (Salmon, 2011). The growing frequency with which the concept is invoked amongst authors publishing in CPH has led us to joke, on more than one occasion, that perhaps we should modify our name to Critical Public Health: the Negative Impacts of Neoliberalism. In light of the growing prominence accorded to the concept of neoliberalism in (and of course beyond) the journal, it therefore seems like a good time to take stock of our conceptual equipment to ensure that it does what we think it does and want it do. Reminded of Latour’s (2004) injunction to think critically about critique, in this edito- rial we simply want to do ‘what every good military officer, at regular periods, would do: retest the linkages between the new threats he or she has to face and the equipment and training he or she should have in order to meet them’ (p. 231).
L.K Allen-Scott, J.M Hatfield, L McIntyre and L McLaren
To achieve elimination of malaria, both ‘populations at risk’ strategies and ‘population health’ approaches to intervention are required. While the ‘populations at risk’ vs. ‘population health’ debate is not new to public health, here we advance the discussion by identifying how the ‘population health approach’, coupled with concepts from theories of unintended harms, could be used to identify and guide efforts to minimize unintended harm associated with ‘populations at risk’ strategies, using malaria as an example. We begin by reviewing unintended harm and present the presumptive diagnosis and treatment of malaria clinical practice guideline (PDTM-CPG) as an example of a ‘populations at risk’ strategy for malaria control. We then consider the value of the ‘population health’ approach for identifying and minimizing cultural and economic unintended harms associated with the PDTM-CPG. We outline several concepts that are helpful in terms of the identification and mitigation of unintended harm. Specifically, the ‘population health approach’ emphasizes structural determinants of health that are key to enhancing intervention impact and reducing inequities, while theories of unintended harms emphasize factors that play into the selection and impact of interventions; namely, the breadth and depth of the knowledge base, contextual considerations, basic values, and the perceived need for immediate action. Finally, based on these key concepts, we identify practical discussion questions for district, national, and international public health planners and policy-makers to reflect upon when engaging in intervention design or adaptation. These questions are intended to maximize efforts to achieve malaria elimination while minimizing unintended harms.
Nicola Bulled and Edward C. Green
Voluntary medical male circumcision (VMMC) has been rapidly accepted by global HIV policy and donor institutions as a highly valuable HIV prevention strategy given its cost-effectiveness, limited interactions with a health facility and projected long-lasting benefits. Many southern African countries have incorporated VMMC into their national HIV prevention strategies. However, intensive VMMC promotion programs have met with limited success to date and many HIV researchers have voiced concerns. This commentary discusses reasons behind the less-than-desired public demand and suggests how inclusion of the traditional sector – traditional leaders, healers, and circumcisers – with their local knowledge, cultural expertise and social capital, particularly in the realm of social meanings ascribed to male circumcision (MC), may improve the uptake of this HIV prevention strategy. We offer Lesotho and Swaziland as case studies of the integration of universal VMMC policies; these are countries with a shared HIV burden, yet contrasting contemporary sociocultural practices of MC. The similar hesitant responses expressed by these two countries towards VMMC remind us that the incorporation of any new or revised and revitalized public health strategy must be considered within unique historical, political, economic, and sociocultural contexts.
Agnes Meershoek and Klasien Horstman
The last 20 years have seen the rise of ‘a market’ aiming to promote the vitality and health of employees. In this article, we use insights from Science and Technology Studies to analyze how this market developed, what side effects it has given rise to, and to what extent the market identifies and addresses these side effects. Drawing on an analysis of documents and interviews with stakeholders, we will show that knowledge institutes have played a major role in turning employee health into a commodity. Referring to the health sciences for legitimation, they have developed ‘market devices’ that turn employee health into a commodity. In this commodification process, employees are transformed into an object of care and do not constitute a market party themselves. Privatization of occupational health is accounted for by arguing that market mechanisms will adequately address the health of employees as a public goal. However, subtle mechanisms serve to discipline employees who already display a more or less rationalized lifestyle into vital and fit workers, while threatening to exclude unhealthy employees. These unintended side effects of the market of workplace health promotion are neither identified nor addressed in the market, which – for the time being at least – is thus failing to safeguard the public interest of employee health.
Non-representational approaches hold promise for critical theory in public health. At the same time, they also hold promise for practitioners looking to develop practical dimensions for interventions. This article examines physical activity in Sofia, Bulgaria, a country with low levels of physical activity participation, to draw attention to the potential of non-representational theory for public health. In doing so, this article explores recreational running clubs and runners in Sofia. The role of affect, objects and movement in running routines is used to think through the techniques and technologies of participation. The article concludes by outlining how embracing on openness to bodily movement in public health theory could be beneficial in attempts to improve participation rates in physical exercise.
Suzanne Fraser, Jake Rance and Carla Treloar
Rates of hepatitis C virus transmission among people who inject drugs in Australia remain high despite decades of prevention education. A key site of transmission is the sharing of injecting equipment within sexual partnerships. Responsibility for avoiding transmission has long been understood individually, as have the measures designed to help individuals fulfil this responsibility, such as the distribution of sterile injecting equipment. This individualising tendency has been criticised for placing an unfair level of responsibility on poorly resourced, marginalised people and ignoring the social nature of injecting drug use and related health care. Likewise, although research has demonstrated that injecting drug use is gendered, gender and sexual partnerships remain marginal to health promotion efforts. In this article, we address these weaknesses, drawing on a qualitative, interview-based project that explored equipment sharing within (hetero)sexual partnerships. In conducting our analysis, we explore a key theme that emerged in discussions about accessing and sharing injecting equipment, that of convenience, using critical marketing theory to understand this theme. In particular, we investigate the issues of convenience that affect the use of sterile injecting equipment, the many factors that shape convenience itself, and the aspects of equipment use that go beyond convenience and into the realm of intimacy and meaning. We conclude that injecting equipment needs to be both meaningful and convenient if sharing within partnerships is to be reduced further.
Olagoke Akintola, Netsai Bianca Gwelo, Ronald Labonte and Talitha Appadu
The global financial crisis that began in 2008 with the collapse of the US real estate bubble is considered the worst economic turmoil since the Great Depression in the 1930s. While the crisis has negatively impacted the global economy and the flow of aid to Sub-Saharan African countries, little is known about the implications of the crisis for community-based organizations (CBOs) providing health-related services in marginalized communities. We conducted qualitative interviews with managers of 14 CBOs providing health and social services to marginalized communities in South Africa about their experiences of the crisis. CBOs reported experiencing a marked decrease in funding received from both international and local donors as a result of the global financial crisis. At the same time, they experienced difficulties in securing new funding. Organizations addressed the funding problems by conducting organizational restructuring and implementing austerity measures that led to the retrenchment of staff, reduction in benefits and incentives for staff and volunteers, reduction in the number of communities served and rationing of services provided to these communities. These measures had negative psychological impacts on paid staff and volunteers and contributed to absenteeism and attrition among volunteers, and some of the organizations eventually closed down. Our findings show that the global financial crisis has far-reaching implications for health, social and developmental services delivery and ravaging impacts on the economy of marginalized communities. Policy-makers should explore mechanisms for protecting CBOs from the effects of economic shocks to guarantee the provision of critical services to marginalized communities.
Claire Thompson, Steve Cummins, Tim Brown and Rosemary Kyle
Family meals, as acts of domestic food provisioning, are shaped by the competing influences of household resources, food preferences and broader cultural norms around dietary practices. The place of children’s food tastes in family meal practices is particularly complex. Food tastes stand in a reciprocal relationship with family food practices: being both an influence on and a product of them. This paper explores how parents think about and respond to their children’s food preferences in relation to family meal practices. A qualitative study was conducted with residents of Sandwell, UK. The results presented here are based on the responses of nine key participants and their families. Photo elicitation methods generated participant food photo diaries that were used to inform subsequent interviews. A thematic analysis revealed two contrasting ways of incorporating children’s tastes into family meal routines: (1) ‘what we fancy’ and (2) ‘regulated’. The former entails repeatedly consulting and negotiating with children over what to cook for each meal. It is supported by the practical strategies of multiple and individually modified meals. The latter relies upon parents developing a repertoire of meals that ‘work’ for the family. This repertoire is performed as a series of ‘set meals’ in which any requests for variation are strongly resisted. Our findings add to the small body of literature on household food provisioning and suggest that achieving the idealised ritual of the family meal is underpinned by a range of values and strategies, some of which may run counter to health messages about nutrition.
Stein Egli Kolderup Hervik and Miranda Thurston
The individualization of health has been extensively discussed in the last few decades. Empirical work, however, has mainly had its origins within neoliberal societies. Norway, as a social democratic welfare state based on universal social rights and egalitarianism is thus of interest in understanding how people’s talk reflects national policies. Through a series of 18 in-depth interviews with a heterogeneous group of middle-aged and elderly men in rural Norway, this paper explores lay men’s understandings of individuals’ responsibility for health vis-à-vis the state’s. The men in this study expressed complex but shared notions of the state’s and the individual’s responsibility for health. The individual’s main responsibility was to act in specific ways in order to maintain good health. However, little blame was placed on those who did not act in the expected way. The state’s main responsibilities were to facilitate the healthy lifestyle of individuals and act as a safety net for those in need. The state was also viewed as being responsible for providing universal health care free of charge, regardless of the reason for the need. We argue that the political and societal values of Norway are reflected in the men’s talk about responsibility for health, alongside neoliberal ideas found in other Western societies. Importantly, however, we conclude that a social democratic welfare state system supports and facilitates agency with regard to health, lifestyle and one’s life more broadly.
Shiva Nourpanah and Fiona S. Martin
This paper presents the results of a study exploring official public health discourse surrounding obesity in Iran. Data were obtained from the Iranian Government agency website responsible for public health. Our study contributes to the knowledge about the social construction of public health issues in general, and obesity in particular, in a developing country that subscribes to sociocultural norms and a political economy regime proclaimed to be very different from those in secular liberal democracies. Our analysis reveals noteworthy differences and parallels between obesity discourses emanating from public health officials in the neoliberal West and those currently taking shape in the Iranian context. While a notable lack of emphasis on consumption as a tool of lifestyle change as well as distinctive anxieties regarding modernization and technology characterize obesity discourse in Iran was noted, so was the promotion of individual behaviour change. We discuss the implications of these findings and make recommendations for further research on the public health strategies currently being undertaken to address obesity in Iran and other non-Western contexts.
Understanding disability requires understanding its social construction, and social construction can be read in cultural products. In this essay, I look to one major locus for images of persons with disabilities—horror. Horror films and fiction use disability imagery to create and augment horror. I first situate my understanding of disability imagery in the horror genre using a case study read through the work of Julia Kristeva. But, I go on to argue that trademark moves in the horror genre, which typically support ableist assumptions, can be used to subvert ableism and open space for alternative social and political thinking about disability. I point to the work of Tim Burton and Stephen King to demonstrate these possibilities in horror.
In this paper, I read The Normal and the Pathological by French philosopher Georges Canguilhem for what it can offer disability theory. I examine how the field has already taken up the text but further, I argue for The Normal and the Pathological as a keystone of disability theory (currently taken up with curiously reserved energy). I start with a précis on the text before offering a condensed citation analysis of the book. In the latter part of the paper, I suggest how the monograph might inform current conversations and I offer possibilities for it to deepen and complicate core notions about disability, including the social model, norms, normalcy, and the normate. I conclude by suggesting that Canguilhem’s philosophical intervention can be understood as “propulsive atavism” – an excavation of medical epistemology in order to map and reconfigure its legacies – and I propose this as one methodological template for disability scholarship.
Elizabeth B. Purcell
The present essay aims to respond to recent arguments which maintain that persons with severe cognitive impairments should not enjoy the full moral status or equal dignity as other “cognitively-able” humans. In the debate concerning moral standing and worth, philosophers Singer and McMahan have argued that individuals with certain impairments should not be granted full moral status and therefore, by extension, should not be awarded the same inviolability as humans without cognitive impairments. In response, I argue that an overlooked social ability – the capacity to narrate – provides grounds for the full moral status of individuals with severe cognitive impairments, and thus provides a defense and support for individuals with such “disabilities” to play a robust role in moral action and contribution to human living.
This article critically analyzes the U.S. military’s contradictory use of violent video gaming technologies for recruiting young gamers to the military, training soldiers for combat, and clinically treating soldiers for posttraumatic stress disorder (PTSD) caused by military service. Using a Disability Studies lens, I discuss the commercial video game Full Spectrum Leader/Warrior, the U.S. Army’s free video game America’s Army, and the virtual reality exposure therapy application Virtual Iraq. I also discuss missions and omissions from the literature on these gaming technologies, which bolsters the underlying ableism of military culture that inhibits soldiers from recovering from PTSD.
Tara A. Fannon
With its emphasis on physical form, the diffusion of the feminine ideal relies heavily on the use of visual imagery but there is a common knowledge about the feminine ideal that penetrates language and discourse. The relationship between mainstream representations of the feminine ideal and non-disabled female body/self dissatisfaction has been well-documented over the years but less attention has been given to understanding how such visual representations affect women with disabilities, specifically women with visual disabilities. Drawing on qualitative data taken from the personal diaries and in-depth interviews with seven blind and visually impaired Irish women, and using a feminist disability model reinforced by sociology of the body, gender theory and visual studies, I examine what it means to be a young woman with a visual disability living in a visually-reliant, appearance-oriented culture. I explore interpretations and expressions of femininity and beauty, the complicated, often fraught, relationship with female body and self and the rituals and practices used to manage appearance while having a disability.
Rachel D. Davidson, Lara C. Stache
This essay analyzes a controversy involving Amelia (Mia) Rivera, a three-year old girl who was denied a life-saving kidney transplant in January 2012. As reported by Mia’s mother, Chrissy, on her blog post, Mia was denied the kidney transplant because of her mental disability. Throughout the public discussion that took place over a few short weeks, we argue Mia’s ineligibility was rearticulated through rhetorics of motherhood, unjust body language, and questions about medical authority. we suggest this indicates that descriptions of the body and its able-ness carry more weight in the public’s understanding of health issues than does medical authority.
Of feminism and disability theory’s many overlapping concerns, few have received as much attention as prenatal genetic diagnosis and selective abortion. While the attention to how genetic selection reinforces disability stigma is important, much of this writing has failed to present the feminist case for the right to unrestricted abortion. This oversight has led to an articulation of the disability critique of selective abortion that threatens the very claims to reproductive freedom and bodily self-determination that undergird disability politics as well. This article rearticulates the feminist case for unrestricted reproductive rights in order to challenge the current framing of prenatal genetic diagnosis as an ethical failure and to present the opportunity to refigure reproductive rights as disability rights.
Annemarie Rujisbroek, Mariel Droomers, Wim Hardyns, Peter P Groenewegen and Karien Stronks
This study examined how the health of Dutch residents in 2012 was influenced by changes in neighbourhood social cohesion, disorder, and unsafety feelings between 2009 and 2011. Multilevel regression analyses on repeated cross-sectional survey data included 43,635 respondents living in 2100 areas. Deteriorating social cohesion and unsafety feelings were negatively associated with general health, while improvement in social cohesion was associated with better general health of the population. When the interplay of neighbourhood features was considered, deteriorating neighbourhood safety appeared decisive for health, i.e. improving social cohesion did not mitigate the health effect of deteriorating neighbourhood safety. Our results show it is important to take concurrent interactions between neighbourhood features into account when examining their health impact.
Margaret Whitehead, Andy Pennington, Lois Orton, Shilpa Nayak, Mark Petticrew, Amanda Sowden and Martin White
We conducted the first synthesis of theories on causal associations and pathways connecting degree of control in the living environment to socio-economic inequalities in health-related outcomes. We identified the main theories about how differences in ‘control over destiny’ could lead to socio-economic inequalities in health, and conceptualised these at three distinct explanatory levels: micro/personal; meso/community; and macro/societal. These levels are interrelated but have rarely been considered together in the disparate literatures in which they are located. This synthesis of theories provides new conceptual frameworks to contribute to the design and conduct of theory-led evaluations of actions to tackle inequalities in health.
The paper examines the history of constitutional therapy in Weimar and Nazi Germany. Focusing on Walther Jaensch’s “Institute for Constitutional Research” at the Charité in Berlin, it shows how an entrepreneurial scientist successfully negotiated the changing social and political landscape of two very different political regimes and mobilized considerable public and private resources for his projects. During the Weimar period, his work received funding from various state agencies as well as the Rockefeller foundation, because it fit well with contemporary approaches in public hygiene and social medicine that emphasized the need to restore the physical and mental health of children and youths. Jaensch successfully positioned himself as a researcher on the verge of developing new therapies for feeble-minded people, who threatened to become an intolerable burden on the Weimar welfare state. During the Nazi period, he successfully reinvented himself as a racial hygienist by convincing influential medical leaders that his ideas were a valuable complement to the negative eugenics of Nazi bio-politics. “Constitutional therapy,” he claimed, could turn genetically healthy people with “inhibited mental development” (geistigen Entwicklungshemmungen) into fully productive citizens and therefore made a valuable contribution to Nazi performance medicine (Leistungsmedizin) with its emphasis on productivity.
The sonic diagnostic techniques of percussion and mediate auscultation advocated by Leopold von Auenbrugger and R. T. H. Laennec developed within larger musical contexts of practice, notation, and epistemology. Earlier, François-Nicolas Marquet proposed a musical notation of pulse that connected felt pulsation with heard music. Though contemporary vitalists rejected Marquet’s work, mechanists such as Albrecht von Haller included it into the larger discourse about the physiological manifestations of bodily fluids and fibers. Educated in that mechanistic physiology, Auenbrugger used musical vocabulary to present his work on thoracic percussion; Laennec’s musical experience shaped his exploration of the new timbres involved in mediate auscultation.
A well-established interpretation associates the nineteenth-century psychiatrist Pliny Earle’s deflation of high cure rates for insanity with the onset of a persistent malaise in patient treatment and public health policy during the Gilded Age. This essay comes not to praise Earle but to correct and clarify interpretations, however well intentioned, that are incomplete and inaccurate. Several points are made: the overwhelming influence of antebellum enthusiasm on astonishing therapeutic claims; the interrogation of high “recovery” rates begun decades before Earle’s ultimate provocation; and, however disruptive, the heuristically essential contribution of Earle’s challenge to furthering a meaningful model of mental disorder. In spite of the impression created by existing historiography, Earle, a principled Quaker, remained committed to “moral treatment.”
April brings many special issues! We’ve already highlighted themed issues on insurance and digitized health, and here are two more themed issues to know about: this month’s História, Ciências, Saúde-Manguinhos is on The Biomedicalization of Brazilian Bodies: Anthropological Perspectives, and the current South Atlantic Quarterly is about Life After Biopolitics. Enjoy!
The Biomedicalization of Brazilian Bodies: Anthropological Perspectives (open access)
Ilana Löwy, Emilia Sanabria
This special issue brings together work on the “biomedicalization” of Brazilian bodies, examining the way biomedical techniques are taken up across the divergent structural constraints afforded by private and public health in Brazil. Biomedicalization – or “technoscientific interventions in biomedical diagnostics, treatments, practices, and health to exert more and faster transformations of bodies, selves, and lives” – forms an assemblage that is both global and highly local. Our aim is to interrogate this phenomenon from Brazil.
The authors, writing from Brazil, Europe, and North America, share a long-standing commitment to analyzing the specific local biologies – and local politics – of Brazilian approaches to health and the body. They probe the incursion of biomedical technologies within richly depicted social worlds, revealing quotidian violence (particularly where women’s bodies are concerned), exceptional forms of care within conditions of precarity, and the intersections of kinship, class, work, and the symbolic capital afforded by biomedical consumption in Brazil. They share a commitment to critically engaging with biomedical conceptions of disease and illness, destabilizing the body as a stable referent (implicitly grounded in a biomedical ontology), analyzing health as a deeply relational, situated, and political process.
The articles draw on critical theory and science and technology studies, departing from a practice of medical anthropology subservient to biomedical concerns. They reveal the vitality of Brazilian anthropology of medicine and anthropological studies of medicine in Brazil. We believe that the main obstacle to the wider circulation of Brazilian studies in medical anthropology seems less the product of an epistemic and methodological incommensurability and more the result of an uneven circulation of our Brazilian colleagues’ work beyond Brazil, due to the paucity of structures that facilitate collaborations and the hegemony of the English language in international publications. One of the goals of this special issue is to showcase the prolific circulations that constitute the field and provide a forum for productive exchange between anthropologists, sociologists, historians, epidemiologists, and public health experts interested in the biomedicalization of Brazilian bodies.
The texts in this special issue examine the elusive and fluid careers of abortive drugs as they travel through legal regimes; the contingencies of psycho-pharmaceuticalization, beyond the resistance or bioreductionist polarization; the stratification of obstetrical ultrasound use; the rich social worlds within which genetic technologies are taken up and made sense of; and the blurring of enhancement and health and the redefinition of what caring is.
The biomedicalisation of illegal abortion: the double life of misoprostol in Brazil (open access)
Silvia De Zordo
This paper examines the double life of misoprostol in Brazil, where it is illegally used by women as an abortifacient and legally used in obstetric hospital wards. Based on my doctoral and post-doctoral anthropological research on contraception and abortion in Salvador, Bahia, this paper initially traces the “conversion” of misoprostol from a drug to treat ulcers to a self-administered abortifacient in Latin America, and its later conversion to aneclectic global obstetric tool. It then shows how, while reducing maternal mortality, its use as an illegal abortifacient has reinforced the double reproductive citizenship regime existing in countries with restrictive abortion laws and poor post-abortion care services, where poor women using it illegally are stigmatised, discriminated against and exposed to potentially severe health risks.
The dilemma of a practice: experiences of abortion in a public maternity hospital in the city of Salvador, Bahia (open acess)
Cecilia McCallum, Greice Menezes, Ana Paula dos Reis
The article discusses abortion and miscarriage from the perspective of women admitted to a public maternity hospital in Salvador (BA), Brazil. Based on qualitative and quantitative research, it draws on participant observation of everyday hospital life. Taking an ethnographic approach, it addresses the hospital experiences of women who had miscarriages or induced abortions, also presenting the views of health professionals. It argues that the way the institution structures care for abortion and miscarriage involves symbolic processes that profoundly affect women’s experiences. The discrimination against women who have had abortions/miscarriages is an integral part of the structure, organization and culture of these institutions, and does not derive solely from the individual actions of healthcare personnel.
“Holy scan” or “picture of the baby?” Biomedicalization and stratification in the use of obstetric ultrasound in Rio de Janeiro (open access)
Lilian Krakowski Chazan and Livi F.T. Faro
Based on ethnographic studies conducted at public and private healthcare facilities in Rio de Janeiro, we argue that the dissemination of (bio)medicalization varies in accordance with the social stratum of the expectant mothers, thereby producing thoroughly distinct fetal and pregnant bodies, as well as different gestational processes. Starting from the basic premise that biomedicalization represents a transformation in the process of medicalization, characterized by the growing incorporation of technoscience into biomedicine, the observed universes displayed different stages in this transformation, consonant with the social stratification of the women who underwent the scans.
Low-complexity biotechnology and everyday aspects of “care:” neonatal testing and sickle cell diagnosis in Brazil (open access)
The article discusses the link between the use of low-complexity biotechnologies and the diverse notions of “care” involved in the process of diagnosing sickle cell disease. It analyses the stories of four different patients and their families, all collected during ethnographic fieldwork, that illustrate several aspects of the experience of living with the condition. These stories demonstrate the presence of what Mol called the “logic of care,” showing how the everyday use of diagnostic technology is set within life flows that relate to other realms of experience with biomedicine, kinship groups and community networks.
This article examines how cancer genetics has emerged as a focus for research and healthcare in Cuba and Brazil. Drawing on ethnographic research undertaken in community genetics clinics and cancer genetics services, the article examines how the knowledge and technologies associated with this novel area of healthcare are translated and put to work by researchers, health professionals, patients and their families in these two contexts. It illuminates the comparative similarities and differences in how cancer genetics is emerging in relation to transnational research priorities, the history and contemporary politics of public health and embodied vulnerability to cancer that reconfigures the scope and meaning of genomics as “personalised” medicine.
Madness and crime: Zefinha, the longest confined woman in Brazil (open access)
Debora Diniz and Luciana Brito
Living in a forensic hospital for the last 38 years, Josefa da Silva is the longest female inhabitant surviving the penal and psychiatric regime in Brazil. This paper analyses dossier, judicial proceedings, interviews and photographs about her. The psychiatric report is the key component of the medical and penal doubling of criminal insanity. Twelve psychiatric reports illustrate three time frames of the court files: abnormality, danger, and abandonment. The psychiatric authority over confinement has moved from discipline to security, and from disciplinary security to social assistance. In the arrangement between the penal and psychiatric powers, the judge recognizes the medical authority over the truth of insanity. It is the medicine of the reasons for Zefinha’s internment that altered over the decades.
Psychiatry, bio-epistemes and the making of adolescence in southern Brazil (open access)
Dominique Pareja Béhague
Drawing on an ethnographic study in southern Brazil, this paper explores how therapists’ attempts to “resist bioreductionist” pharmaceutical use both succeed and crumble. Using a comparative framing, I show that pharmaceuticalization can become an anesthetizing “lid” that interacts with young people’s polarizing micro-politics and is an outgrowth of multi-generational medico-political family histories. This lid, however, is not air-tight and exceptionalities are born out of these very same histories. I argue that both pharmaceuticalization and exceptions to it emerge not through “resistance” to biopsychiatric logics but from the transformative possibilities that the patterned co-production of social, political, and psychiatric life affords.
Cesarean sections, perfecting the technique and standardizing the practice: an analysis of the book Obstetrícia, by Jorge de Rezende (open access)
Andreza Rodrigues Nakano, Claudia Bonan, Luiz Antonio Teixeira
This article discusses the development of techniques for cesarean sections by doctors in Brazil, during the 20th century, by analyzing the title “Operação Cesárea” (Cesarean Section), of three editions of the textbook Obstetrícia, by Jorge de Rezende. His prominence as an author in obstetrics and his particular style of working, created the groundwork for the normalization of the practice of cesarean sections. The networks of meaning practiced within this scientific community included a “provision for feeling and for action” (Fleck) which established the C-section as a “normal” delivery: showing standards that exclude unpredictability, chaos, and dangers associated with the physiology of childbirth, meeting the demand for control, discipline and safety, qualities associated with practices, techniques and technologies of biomedicine.
Legal remedies: therapeutic markets and the judicialization of the right to health (open access, in Portuguese)
João Biehl and Adriana Petryna
This study draw on the struggle of parents of children with mucopolysacchar idosis to access expensive drugs in the name of universal right to health. The work explores how, in Brazil, right-to-health litigation became an alternative pathway to access health care and shows that several public and private stakeholders dispute the judicialization of health. Biotechnology is, therefore, understood to remake human and social worlds as it opens up new spaces of ethical problematization, desire, and political belonging.
Medical borderlands: engineering the body with plastic surgery and hormonal therapies in Brazil (open access, in Portuguese)
Alexander Edmonds and Emilia Sanabria
This paper explores medical borderlands where health and enhancement practices are entangled. It draws on fieldwork carried out in the context of two distinct research projects in Brazil on plastic surgery and sex hormone therapies. These two therapies have significant clinical overlap. Both are made available in private and public healthcare in ways that reveal the class dynamics underlying Brazilian medicine. They also have an important experimental dimension rooted in Brazil’s regulatory context and societal expectations placed on medicine as a means for managing women’s reproductive and sexual health. Off-label and experimental medical use of these treatments is linked to experimental social use: how women adopt them to respond to the pressures, anxieties and aspirations of work and intimate life. The paper argues that these experimental techniques are becoming morally authorized as routine management of women’s health, integrated into mainstream Ob-Gyn healthcare, and subtly blurred with practices of cuidar-se (self-care) seen in Brazil as essential for modern femininity.
On the history of medicine in the United States, theory, health insurance, and psychiatry: an interview with Charles Rosenberg (open access)
Charles Rosenberg and Rafael Mantovani
An interview with Charles Rosenberg conducted by Rafael Mantovani in November 2013 that addressed four topics. It first focused on the way in which Rosenberg perceived trends and directions in historical research on medicine in the United States during the second half of the twentieth century. The second focus was on his experience with other important historians who wrote about public health. Thirdly, he discussed his impressions about the current debate on health policy in his country. Finally, the last part explores some themes related to psychiatry and behavior control that have appeared in a number of his articles.
Life after Biopolitics (open access)
Sara Guyer and Richard C. Keller
[excerpt] We are convinced that biopolitics has not outlived its usefulness. Hailing from the fields of literary criticism and history, we find a number of ways in which the biopolitical is an important frame with an enduring influence. Yet the study of life in the humanities and the qualitative social sciences has developed such that biopolitics alone is no longer sufficient. As the essays in this issue demonstrate, we live and think in an era that is after biopolitics: one in which the idea of biopolitics will remain a part of meditations about life, but which will call for other frames for conceptualizing life. To capture this understanding, we want to suggest that biopolitics not only survives these shifts but also that survival inheres in biopolitics, that there is no concept of life in biopolitics that is not, at the same time, a notion of survival. For this reason, among others, the “after” of this volume’s title can be heard to resonate with the sur of survival and the history of thinking about living as living on among those who have and have not reflected on biopolitics by name.
Scholars of biopolitics widely assume that the life addressed by power = human life, with a reassuring unconsciousness of having left anything at all out of the equation. Recent research contends that animals are at least as much as human beings subject to varied techniques for managing life. Such “zoopolitical” arguments are, however, likely to be effectively defused, given that theories of biopolitics and politics alike assume that human beings are the real subjects of politics and nonhumans are excluded from the possibility of justice. This essay argues that such an assumption overestimates our ability to answer the question, who are the real political animals? Through a reading of Hannah Arendt’s critique of human rights, the essay argues that the traditional assumption that political status is available only to human beings relies on the totalizing power of metaphor to confuse human life and politics. It offers an account of the challenge posed to this metaphor in a brief scene from the 2011 film Rise of the Planet of the Apes. Rather than a recognition of political status based on the nature of animals, what such a challenge amounts to is the apprehension by the viewer of his own stupidity.
Catastrophes now are part of our daily lives, as though the apocalypse could hit us each morning. Yet this crazy relation to the world is a sane response to postmodern society. A new form of governance that I call the biopolitics of catastrophe has come into being in the attempt to metabolize this new relation to the world, this new sensitivity to potential disasters. Biopolitics of catastrophe has two modes: (1) an averting mode, whose goal is to avert events in advance, and (2) a regulating mode, whose function is to erase events after the fact. Grounded on this perverted temporality, this new form of governance blocks the advent of an ecopolitics that could act on the causes rather than the effects of the environmental damages that we are already suffering.
Reconsidering Mimesis: Freedom and Acquiescence in the Anthropocene
Elizabeth R. Johnson
In 1993 Michael Taussig’s Mimesis and Alterity revitalized the power of the mimetic faculty to craft a vision of nature that was neither the alienated subject of modern science nor the passively malleable medium of late twentieth-century social constructivism. Taussig drew explicitly on a tradition of earlier twentieth-century scholarship—Walter Benjamin, Roger Caillois, and Max Horkheimer and Theodor W. Adorno—that located in the mimetic faculty a way out of a techno-fetishized social milieu. This essay explores how mimesis has once again been endowed with revolutionary potential in the contemporary moment through the growing field of biomimicry. I show how mimesis promises a way toward a future free from human hubris and ecological catastrophe—and a way out of the conditions that have created the Anthropocene. I explore how this works in biomimetics, with a detailed look at one of the most celebrated examples of the biomimetic paradigm: the gecko’s foot. But, I ultimately suggest that what has been so seductive about mimesis throughout history is that it offers a “way out” of political confrontation. In doing so, I argue mimesis too easily serves as a double mirror—rather than transform production, nonhuman life at the level of biology becomes a force for production.
Gender Abolition and Ecotone War
Joshua Clover and Juliana Spahr
This essay begins with two examples where certain precapitalist material entanglements were taken up and transformed by capital. One is the Hawaiian creation chant, the Kumulipo, and the complicated ecotones that define that poem. The other is gender. Neither ecotones nor the gender distinction arise with capitalism, but capitalism has been spectacularly successful in using both toward its own ends. From there the essay argues that the ecological crisis is a single crisis of capitalist accumulation that develops over time and appears differently in different moments, and any opposition to crisis capitalism (which is to say, capitalism tout court) must turn to synthesize the problematics of ecology and feminism at the level of the whole. The particular transformation in which we are interested concerns the remaking of an aggregate arrangement, various and elaborated and tending toward a whole, into a systematic differential purpose-built to accumulate capital. We argue that the tracing of this history will lead us not merely toward a useful sense of how we date the Anthropocene but toward a politics adequate to the present and an idea of where to intervene.
The Biopolitics of Dignity
My essay traces the genealogy of the notion of human dignity in modern French law. My goal is to explain how and why dignity has come to be associated with national belonging and public order, as evidenced by the 2010 law banning “face coverings” in public spaces or by the recent pleas to revive “national indignity” after the attacks on the offices of Charlie Hebdo. I argue that the definition of dignity circulating in French law since the 1990s is a corporatist one. Rather than promote abstract individual freedom, human rights, and democratic inclusion, this understanding of dignity (theoretically much closer to that of political Catholicism and personalism than to the Kantian or liberal understanding of dignity seen in American law) insists on the obligations that the individual has toward the community, toward the social, and, in its most recent formulations, toward France. I propose that human dignity in the French context be considered less as a value intrinsic to a person than as a project of biopolitical rule.
During France’s Third Republic, a wide-ranging discourse about animal societies offered a particularly powerful way to redefine the ideological underpinnings of human association in the republican national state. Drawing on precedents in comparative anatomy and physiology, Alfred Espinas drafted his pioneering work Animal Societies (1877) in the wake of a period of pronounced national failure. In what was widely recognized as the “first chapter” in French sociology, Espinas’s work signaled a growing struggle in the French university that echoed a larger struggle in the early Third Republic between different elements of the national bourgeoisie. Biology was critical to this struggle because it offered conceptual resources that the largely liberal terms of French academic philosophy did not possess for conceptualizing the differentiation and interdependence of social elements. Organicism thus provided a strong set of ideological tools for regulating hierarchical social relations between classes in a period of working-class agitation and organization. At the same time, the prestige of biology allowed a newly emergent element of the lower middle classes to pursue its social ambitions in the university field at the expense of an established academic elite.
The Poisonous Ingenuity of Time
Drawing on ethnographic work with one family in Baltimore that began over a decade ago, I consider how time, symptom, and forms of vulnerability and precarity come to shape polypathia (comorbidity). First, I attempt to demonstrate how life with concurrent and recurring illness has a character more dense than interwoven disease etiologies or a general pattern of symptomatology. Chronic illness in its plural form offers terms of life and living that are contingent, disruptive, and dissolving—not so much situated in time as out of step with its familiar cadence. Second, I consider time through the lenses of return, loss, and repair. Ethnography, like illness, has a rhythm, and it is this shared, distorted meter that the essay follows. Life—filling up and emptying out between past and present—is precisely the object here. Chronic illness acts as a temporal threshold through which life finds new ground or is set adrift.
Biopolitics and Population Aesthetics
This essay employs the concept of population to articulate the logic of a dominant style of contemporary thought, practice, and affect. This style, which underwrites cultural productions as diverse as reality TV, para-scholarly endeavors such as Wikipedia, and biomedical initiatives such as personalized medicine, hinges upon locating individual idiosyncrasies within large populations. The essay’s first two sections draw on Michel Foucault’s account of the historical emergence of biopolitics to illuminate the metaphysical assumptions that underwrite the modern concept of population. The third section proposes that these assumptions allow us to see the concept of population as an implicit media theory (i.e., populations are media that capture individual variations) and provides as an early twentieth-century example Leland Stanford’s interest in applying horse trotter breeding techniques to human populations. Sections four and five sketch the expansion of population logic in the post-WWII period in areas such as the US higher educational system, personalized health, and the neoliberal concept of “the market.” The sixth section proposes that these developments eventuate in “population aesthetics,” as the logic of population becomes the enabling frame for judgments concerning what is beautiful and ugly, as well as for our intuitive sense of the relationships between individuals and collectives.
Editor’s note: We received this letter, signed by the authors listed above and by nine anonymous authors, as a reply to our earlier Debate Forum.
After far too long a moratorium on reasoned debate, a terrible dam first cracked, then crumbled. Certainly the current sturm und drang about American academics’ relationship to the ever more disastrous situation in Israel/Palestine is urgent, and long overdue. But just what kind of conversation is taking place – and where will it lead? Where should it lead?
These are urgent questions for us anthropologists. Beginning last Friday, April 15, and until May 31, members of the American Anthropological Association (AAA) face a momentous decision: to vote either for or against an academic boycott of Israel, a state whose policies, actions, and inaction have wrought untold harm on Palestinians’ health, well-being, and dignity. As committed anthropologists – most of us junior and untenured – we approach this vote with trepidation, and rage.
We are enraged by the occupation of Palestinian people and lands, an occupation that is immoral, illegal, and unjust. We know that the devastating impact of decades of Israeli policy, especially on the physical and mental health of Palestinian children, will persist long into the future, whatever the political tides may bring. And we agree that now is the time for strong statements.
Yet strong statements are not enough. It is also time for targeted, collective action.
Some of our colleagues have appealed for “dialogue” in lieu of boycott, but “dialogue,” too, is insufficient. Dialogue is far too little, and far too late.
At the same time, we know full well that academic boycott is the wrong tool for the job, and we trust that the majority of our colleagues will agree. As Noam Chomsky and others have insisted, we need better tools than this – tools that are more powerful, more precise, and better suited to the task at hand.
For reasons we cannot quite comprehend, the strongest tool in the toolkit has hardly figured in recent anthropological debates about Israel/Palestine. What American anthropologists should be doing is actually quite clear and straightforward. Those who oppose Israel’s violations of Palestinians’ dignity and human rights should begin leveraging our field’s methods and insights to advance a new movement: a movement to educate our elected representatives about the devastating effects of the occupation we are underwriting, and to exert pressure on our government to stop footing the bill. After all, it is we – those of us who are American citizens, and American taxpayers – who are bankrolling Israel’s violent regime of domination and control. Indeed, we have continued to do so even as Israel’s elected leaders have spurned the office of our president, and even as Israeli public discourse has spiraled further and further downward into the kind of ethnocentrism, racism, and xenophobia that now find parallel among our most vulgar compatriots here in the U.S.
At this pivotal moment, we appeal to all who are eager to employ peaceful protest tactics – perhaps, under certain circumstances, even tactics like boycott, divestment, or sanctions – but recognize that an academic boycott is not the right way to go. We appeal to all who are outraged and infuriated by Israel’s policies toward Palestinian people and lands, the Palestinian economy, Palestinian civil society – and who are sickened by the fact that we, as citizens and taxpayers, are partially complicit.
We call upon our fellow anthropologists to join us on a two-fold path: first, to oppose the misdirected notion of academic boycott, and second, to act immediately, purposefully, and in solidarity with Palestinians to pressure the U.S. government to stop allowing Israel to occupy, humiliate, and traumatize in our name. Below, we offer five reasons to pursue this path.
- U.S. taxpayers hold a good measure of direct responsibility for Israel’s occupation of Palestinian people and lands. The most direct and expedient way for American anthropologists to help end the occupation is straightforward: we must press our government to cut the purse-strings. We must insist that our elected leaders stop pandering to groups like AIPAC, which revealed at its last conference (keynote speaker: Donald Trump) that the group represents neither Israel’s best interests, nor those of the United States. (Nor, for that matter, does it speak for the vast majority of American Jews.) American anthropologists must work concertedly toward these goals, and we must do so in solidarity and collaboration with likeminded Palestinians and Israelis, among others. In working toward these goals, we must take pains to avoid being tainted by the scourges of racism or anti-Semitism.
- American academics are just as complicit in the crimes of our own government as Israeli academics are in crimes of theirs. Most top-tier universities in the United States benefit from Department of Defense funding – American tax dollars at work. Many universities permit military recruitment on their campuses. And as taxpayers, American academics are just as complicit in the actions of the U.S. government and U.S. military – including the invasion and occupation of Iraq and Afghanistan, torture at Guantanamo, drone strikes that kill civilians in Pakistan, and possibly recent war crimes in Yemen – as Israeli academics are in theirs. If this measure of complicity warrants academic boycott, shouldn’t a global boycott of American academic institutions be a top priority as well?
- The proposal for academic boycott indicates no clear endpoint, and that’s a huge problem. For some of us, this is the deepest and most serious flaw of the boycott proposal. The boycott resolution offers no clarity, and no specifics, regarding when – if ever – an academic boycott of Israeli institutions would end. Meaningful boycotts have clear targets, and clear endpoints. Those considering boycott should step back and ask: Am I really ready to join a campaign so open-ended it may never achieve its goals – and so vaguely defined it can serve as a fig leaf for unspecified political agendas I may find objectionable?
- Advocates of academic boycott claim that only institutions are targeted, not individuals – but that’s not what’s happening in practice. Whatever the outcome of the AAA vote, a powerful chilling effect is already palpable. In anthropology, as in other fields, advocates of boycott have already begun refusing to review manuscripts and grant proposals, host (or attend) talks, write letters of recommendation, or advise students. Scholars, junior and senior, have found themselves admonished for publicly taking a stand. This holds true even for scholars with no ties to the region. For instance, one of us with no regional ties was told they could not conduct a research project on infectious disease in the West Bank without violating the terms of the boycott. Another, who happens to be Jewish but has no ties to the region, lamented that in their academic home, any effort to reflect critically on the proposal for an academic boycott was immediately – and wrongly – interpreted as blanket support for occupation and the systematic violation of Palestinians’ human rights. In short, to claim that an academic boycott would solely target institutions, not individuals, is disingenuous at best. (See why the junior anthropologists among us are advancing this statement anonymously?)
- The very idea of academic boycott is tearing our field apart. Revolutionary movements typically aim to build solidarity for a liberatory agenda by recruiting from the broadest potential base of supporters. In some respects, the BDS movement has done just this. It has broken the silence and catalyzed a crucial conversation about catastrophe and complicity. Yet the call for academic boycott has injected poison into the field and engendered cacophony, acrimony, and deep, often paralyzing anxiety. Many a friendship has been strained, or lost, or sacrificed these past few years. Once cordial professional relationships have soured or been severed. Many anthropologists have chosen, or felt pressured, to sign one petition, or another. As the call for academic boycott has reverberated through our community, possibilities for the kind of targeted political action that could actually make a difference have been sidelined by boycott proponents’ single-minded focus on one blunt, and ultimately ineffectual, tool.
This, then, is the second reason we are enraged. We are committed to advancing this extraordinarily important conversation, but we are enraged by the impact this narrow-minded proposal is having on our discipline and our intellectual community. The proposal has flattened history and complexity into a false binary: support an academic boycott and stand on what some are speciously calling “the right side of history,” or oppose boycott and reveal yourself to be morally bankrupt. What kind of reasoning is this? What kind of anthropology is this?
In the spirit of solidarity with Palestinians, in the spirit of robust citizenship in our own countries, and in the spirit of anthropology, we invite you to join us on the two-fold path outlined here. Don’t just boycott colleagues for show, or as a band-aid for your conscience, especially when the very colleagues we would boycott are eager to join us and stand together in common cause. Instead, let’s get up and do something we can all agree on: Let’s join together in demanding that the U.S. government cut the purse-strings. Rather than attacking the sacred value of academic freedom, let’s exert the sort of political and financial pressure that will leave Israel’s increasingly paranoid, obstinate, and short-sighted leaders no choice but to take the step we all agree is vital: end the occupation.
- Anonymous, Assistant Professor, public university
- Anonymous, Assistant Professor, public university
- Anonymous, Assistant Professor, public university
- Anonymous, Assistant Professor, public university
- Anonymous, Doctoral Student, public university
- Anonymous, Assistant Professor, private university
- Anonymous, Assistant Professor, private university
- Anonymous, Assistant Professor, private university
- Anonymous, Associate Professor, private liberal arts college
- Jennifer S. Hirsch, Professor and Deputy Chair for Doctoral Studies, Department of Sociomedical Sciences, Columbia University
- Erin Finley
- Sue E. Estroff, Professor, Department of Social Medicine, University of North Carolina, Chapel Hill
- Peter J. Brown, Professor of Anthropology and Global Health, Emory University
- Gillian Feeley-Harnik, Professor Emerita of Anthropology, University of Michigan
- Mark Nichter, Regents Professor, School of Anthropology, University of Arizona
If you would like to add your name to a public list of signatories, send an email to 2016AAAvote@gmail.com.
John Foot’s The Man Who Closed the Asylums: Franco Basaglia and the Revolution in Mental Health Care by Nirmala Jayaraman
by John Foot
Verso Press, 2015, 404 pages
Embracing change is the best way to keep up with John Foot’s pace in his book, The Man Who Closed The Asylums: Franco Basaglia and the Revolution in Mental Health Care (2015). Foot’s holistic approach will appeal to anthropologists and general readers alike as he gathers insight on those who were recovering from both physical and psychological maltreatment in a post-war world (169). This balanced and fair-minded account of mental healthcare reform in 1960’s Italy shows that a hospital’s culture reflects how society at large is structured (175). The book explores how the psychiatrist Franco Basaglia persuaded members of the healthcare community to shut down asylums where abusive practices were being used on patients (133). These meetings lead to legislation where the delivery of mental healthcare would be incorporated into hospitals that covered the general patient population as more people discontinued the use of psychiatric asylums (374). Foot writes that, “As director in Gorizia, Basaglia quickly became convinced that the entire asylum system was morally bankrupt. He saw no medical benefits in the way that patients were treated inside these institutions. On the contrary, he became convinced that some of the eccentric or disturbing behavior of the patients was created or exacerbated by the institution itself” (22).
Basaglia sought to make asylums more humane, but as part of a larger strategy to close down asylums altogether, since reform could not redeem an outdated model of healthcare that survived a period of fascism and the Second World War (157). Along the way, Basaglia did positively impact his patients’ lives. In his research, Foot finds that, “Patients were taking back some control over their lives and over those of their fellow inmates. They were becoming people again, even citizens, with responsibilities and rights” (148). More often than not, “the disappeared people of the asylums, those who had been shut away from real life, without rights and without identities, emerged from the darkness. They showed that they could think for themselves and organize their own lives” (148-149). Basaglia and his team members never fully settled on how to improve the hospital system, however it was understood by all that “it was the institution itself that was the problem” (149).
A highlight of the book occurs where Foot expresses the disagreements, contradictions and discomfort of those wrestling with Basaglia’s ideas about psychiatry. The confusion behind, “who was really in charge?” actually anchors the point of the book (112). This question mutates and resurfaces in his writing, as Foot describes different leaders taking new positions during the 1968 movement. The expectations of both doctors and patients were constantly in flux with the existence of the asylum as an institution, “[W]here the roles of doctor, patient and nurse had also, to some extent, been put on hold. Everyone inside the institution was well aware of their objective status but most were trying to free themselves of their prejudices and of their past” (174). Foot writes, “Gorizia was not just about psychiatry or anti-psychiatry. It was also about medicine in general and role of authority in society as a whole” (89). In order to convey the feeling of how authority and power transferred constantly, Foot does just that as he privileges different sources of information. For example, he writes, “Only by shifting the focus away a little from Basaglia himself can we understand the central role he played in the movement” (49).
Just before readers are completely immersed in the belief that Basaglia had so much influence, Foot gently, yet directly shares how there were limits to this one doctor’s plan as well. For example, he notices how, “The history of Italy’s radical psychiatric movement in the 1960’s and 1970’s cannot be written without strong and central reference to events and policies in Perugia. For this reason, the labeling of this movement as Basaglian is a misnomer” (234). Many of the lessons about belonging to a hospital’s administration were learned by staff from other neighboring places, like Perugia, not just from leaders in Gorizia. Foot further delves into this same point by saying, “The Basaglia-centric story is a linear one. It is easier just to ignore everything else that was going on” (252). Basaglia’s dissatisfaction was with the rituals of the older systems because “Nobody is meant to stay for long in these places. There is a conscious attempt here to avoid any sense of reinstitutionalization” (363). Foot does justice to the movement by developing a report that is devoid of heavy repetition and thematically progresses in the telling of a history that’s bigger than the individual behind it.
Basaglia, and the team he belonged to, saw that “society itself… needed to be transformed” (180). The whole group was very aware that “the meetings were also understood as material to be studied and analyzed, almost as though they were a kind of ongoing research project. The patients were willing participants in an anthropological and political study of institutions undergoing change” (150). Foot’s aim to bring context carefully to these events comes from a continual fear among cultural historians and anthropologists of how often peoples’ stories are taken out of context and disregarded, saying, “patients were seen here, starkly, as victims of institutional violence. The movement everywhere, like that in Gorizia, needed to move forward, or it would simply create new forms of these institutions, or help them to survive” (176).
The author’s greatest strength is how he represents the life behind the eyes’ of this movement. He seizes the moments most pertinent to this part of history as he writes, “Power should only be exercised in order to negate that power” (180). He exercises his own power as a historian and negates it in the form of weighing the dissension that evolved in the details of collected memoirs and notes. He also critiques both the strengths and weaknesses of their effort in a way that respects the whole picture in the frame. He writes that “They radicalized people, their writing and activity were extremely far reaching and the movement also gave them strength and power. But they were also victims of the worst excesses of the movement: the over-powering rhetoric, a tendency towards simplification and sloganeering, the excessive verbosity” (188). The true problem with having too much rhetoric was that, in the midst of clinging to their earliest ideas about reform, some of the leaders failed to imagine the harmful consequences that could happen after closing any asylum.
Power is balanced by effectively giving each voice, including that of the patients’ and their families, a chance to speak in this book. The emotional toll these adjustments took on patients offsets the perfected plan, as Foot writes, “Along the way, great risks were taken. Some people were brutally murdered, others committed suicide. Families had to deal with sons, daughters, mothers and fathers who had serious problems, and who had been shut away behind closed door for years… The outside world was a difficult place in so many ways, it was easy for ex-patients to fall through the cracks in society. Once the asylum system had been done away with, the real work began” (393). One could argue, as Foot moderately suggests, that multiple decisions enabled Basaglia’s idea to come to fruition. As the psychiatrists pushed for reform they also networked to build an outpatient setting for their patients. However, Foot does remind his readers that the main healthcare team responsible for these actions did not anticipate how the patient population needed more room and support than the amount they were provided. Those temporary changes were not enough and Foot does not delve further to offer alternative solutions that might have made a world of a difference. His own goal, in recording these consequences, emerges as he writes, “The movement, as this book has tried to show, was polycentric, complicated, multifaceted and always influenced by local factors — historically, politically, culturally and institutionally” (234). By closing the asylums, psychiatrists were motivated to look outward and observe how social institutions such as schools and the family unit impacted the support systems of patients struggling with mental illness (243). Overall, Foot asserts that a transition this important “had multiple sources of power and inspiration” (254). Foot’s process as a historian runs parallel to that of the people in his book as he writes, “the idea was — always — to put mental illness into context. They were attempting to understand what they saw as the multiple and complicated causes of mental illness” (296).
Foot knows that as a cultural historian he has a lot of control as he investigates different narratives. By checking his own authority as a writer he even undermines his own critical voice, but in a way that makes his authorship more compelling. Foot is motivated by the act of negation not nihilism. He does not terminate the existence of opposing ideas to serve his own ego-involvement as a documentarian witnessing the effects history has on today. He drives the reader to strengthen their intuition and construct a bigger image that includes the revelations and the irreparable messes from psychiatry’s past. Foot takes the time to test his own ideas to foster debate not destruction. In fact, it is Basaglia’s method of making sure “things were pushed to the limit, to expose the contradictions in the system” that inspires Foot, as he writes a mutli-vocal book about the discrepancies overlooked by previous historians (353). Foot continues to illustrate that, “Nobody had the right answer. Everyone made mistakes. Each area adopted its own road to reform, and success was measured in different ways. None of these roads were right or wrong. They were different, and they were all moving in the right direction” (284).
Yet Foot’s own disappointment is in how cultural studies have fallen short of making room for the future, and the diverse viewpoints that come with it, arguing, “there is no point at all in simply repeating this standard story. It is already out there, in numerous versions – text, film, journalistic. For a historian, the only possible route is to take a critical approach to both the sources available and to the past itself” (343). Foot continues to explain the purpose of his methodology of negation by saying, “It is not easy to write about this movement, with its myths, splits, silences and possessive memories” (369). In other words, Foot sees that an honest historian, or clinician, will not treat any single perspective as an absolute. No one person can ever represent the whole puzzle, or cure for a social pathology, when all they have is a piece of it.
Nirmala Jayaraman received a B.A. in Anthropology from Union College, Schenectady, NY. Her research interests include migration, family and kinship, aging, medical anthropology, cross-cultural psychology and public health. She has written book reviews for Allegra Lab: Anthropology, Law, Art & World, British Psychological Society’s The Psychologist, Anthropology & Aging, and Anthropology Book Forum. She is applying for future graduate study this year.
The first time I encountered Judy I was with Dr. Erlich, gathering fact sheets about vulvar pain conditions. Dr. Robichaud, the other physician at the Vulvar Health Clinic (VHC)[i], and a new resident entered the pod in a white-coated blur—animatedly conferring, hastily scribbling on forms that they were pulling from file cabinets, and getting on the phone to arrange an obviously urgent surgery for the woman whose story they had just heard. Amidst the chaos, Dr. Robichaud told us that their patient—Judy—had one of the severest cases of lichen planus (LP) that she’d ever seen: her labia were so fused together that she was urinating through a three-millimeter vulvar opening. The procedure that Dr. Robichaud was scheduling would both surgically correct the problem and evaluate how much of Judy’s vaginal patency it was possible to restore.
Judy was not the first woman I’d met whose genitalia were a source of distress. Prior to the fieldwork that I conducted in the VHC, I had been a nurse practitioner, and for almost fifteen years I managed the gynecological needs of uninsured and low-income women in several US cities. During those years, I observed that the majority of my patients knew little about their genital anatomy and I frequently attended to the repercussions of this: removing tampons or condoms believed by patients to be “lost” in their vaginas; excising vulvar warts for patients who struggled to understand their mode of transmission; and describing, often after the fact, the important differences between hormonal and barrier contraceptive methods regarding pregnancy and infection. I chose the VHC as an anthropological fieldsite because I wanted to know if and how the awkward relationships between my patients and their genitals were changed by the presence of life-altering symptoms. I wanted to know, in other words, if a pressing need for clinical attention, as opposed to a less immediate one for bodily awareness, made it easier to ask “Can we talk about my genitals?”
Genitalia pose multiple dilemmas for critical gender scholars. Aside from the ongoing project of destabilizing the sex/gender binary along which genital anatomy is frequently interpreted, feminist and queer sexuality scholars wrestle with definitional, behavioral, and classificatory questions in our analyses of genitalia, and we work both with and against efforts to medicalize and sexualize these overdetermined body parts. We also recognize that advancing greater bodily and sexual self-determination (when that is a goal) may incite a “sexuality” whose construction Foucault cautioned us to interrogate. In investigating vulvar disease conditions like Judy’s, then, I think about the stakes involved in saying more about her labia rather than less: that my work will reify essentialist notions of “female” genitalia, or that Judy’s pain becomes a vehicle for ideas about her body that don’t resonate with her own experience. I also think about how Judy’s knowledge of her vulvar anatomy is cultivated by a broader cultural dis-ease with women’s non-reproductive genitalia, and how this can lead to material loss, by disease and/or excision. And when I assemble all of these thoughts, I settle on the side of saying more. A whole lot more.
Though perhaps more familiar to anthropologists via its role in female genital cutting debates,[ii] the vulva has been an erratic site of investigation for feminists, sexologists, and other gender scholars, including its relative role in sex assignation,[iii] sexual deviance,[iv] and bodily aesthetics.[v] Composed of two sets of labia (outer and inner), a clitoris and its hood, urinary and vaginal openings, and several sets of secretory glands, vulvas have been both ignored and reclaimed by feminists, often in concert with broader political projects. In my own work, I posit that vulvas in the contemporary United States are best understood as disavowed. The concept of disavowal, in which objects are simultaneously brought to and erased from our attention, helps me to explain the ways that hyper-sexualized vulvas, stripped by cosmetic reduction procedures, contain increasingly less anatomical flesh. It can also explain how even physicians who specialize in vulvar disease conditions contour their definitions of “getting better” around the ability to engage in penetrative sex, i.e., transforming their object of care from vulvar sensation to heteronormative—and vaginal—behavior. As genitalia that are irreducible to procreative or heteronormative bodily capacities, as flesh that can be involved in but that ultimately exceeds vaginal penetration, vulvas are anatomy that compel us to “ask more”[vi] about whether and how “our genitals make us who we are.”[vii]
Though there are a host of issues specific to vulvar disease conditions, there were also commonalities between the patients I met as a nurse practitioner and the women I met at the VHC. In both sites, women were paralyzed by the embodied knowledge that while good patients compliantly reported their symptoms, nice women refrained from speaking about their genitals. That is, and despite the ubiquity of some forms of genital “talk” (e.g., pornography; waxed and manicured “va-jay-jays”) the disavowing nature of a word like cunt structures the ways that vulvas are lived. This dis-ease can extend to non-expert clinicians who encounter—and often fail—women like Judy. In this case, I argue that Judy’s labia suffer from impoverished definitions of genitalia, definitions that exclude body parts that exceed penetrative sexual activities. I outline how Judy’s fused labia tell a story about which bodies are sexual and which are not, and show how a three-millimeter opening in Judy’s vulva indexed the myopic perspectives of providers who were charged with her care.
Lichen planus is an autoimmune disease marked by an overproduction of inflammatory discharge that, if not interrupted, can contribute to permanent scarring, compromised patency, and decreased elasticity of the vagina. Due to anatomical proximity (and gravitational pull), LP can also lead to vulvar problems, including a loss of suppleness and contour erosion of the labia, and decreased flexibility and mobility around the clitoris and its hood. Narrowed vaginal patency thwarts the efforts of women and their partners to engage in penetrative sexual activity and, for many, this behavioral dimension of their condition – rather than ongoing discomfort or evident contour change – is the reason they ultimately seek care.
Judy told Dr. Robichaud that it was “taking [her] ten minutes to pee,” not knowing that medical professionals see vaginal discharge as the likely cause of her problem. Tellingly, Judy’s understanding of her disease condition was organized around urinary problems rather than an inflamed vagina in need of treatment. Like other patients at the VHC, she had lived with (and normalized) difficult symptoms for quite some time before trouble emptying her bladder convinced her that something was wrong. What she learned at her first visit was that a “healthy” genital opening enables a variety of bodily functions, including but not limited to penile penetration; a constricted one, on the other hand, can make vaginal entry difficult as well as trap genital discharge.
The irreversible skin changes sustained by Judy’s genitals made me incredibly sad and when I came home from the clinic that day, I told my housemate—a computer programmer who always listened to my stories with genuine curiosity—all about it. After I’d recounted the details, he asked me why and, more precisely, how this could happen to a woman with health insurance in the contemporary United States.
In my frustration, I replied “Because nobody gives a shit about a sixty-two-year-old woman’s genitals,” a sentiment that I believed wholeheartedly at the time.
And though my assertion was woefully hyperbolic—many people care tremendously about and for the genitals of women of all ages, including women themselves—I nevertheless want to argue that in the case of vulvar neglect, Judy’s age compounds rather than causes the disavowal through which her genitalia were clinically apprehended. The compromised access that Judy and the VHC clinicians had to her (sexual) body on the day she came to the clinic resonates with the inadequate capacity of non-expert providers to properly attend to her disease condition.
Many autoimmune diseases are notoriously enigmatic, but LP is fairly easy to recognize and manage by knowledgeable gynecologists and dermatologists. To better understand the ways that Judy’s vulva was both seen and not seen, however, it is helpful to know more about the drugs involved in her treatment regimen and, even more importantly, how they were deployed by the providers she saw before seeking treatment at the VHC.
Almost a year before Judy came to the vulvar clinic, she had secured a diagnosis for her condition from a dermatologist that I will call Doctor A. Doctor A was a friend of Judy’s from her years of working in research hospitals. At the time that her symptoms began, she had just moved. Since she had not yet secured a local health care provider, she called Dr. A for what she hoped would be an easy consult about her genital irritation. Based on what Judy told him, Dr. A presumptively diagnosed lichen planus and prescribed a topical steroid, which Judy immediately procured and began using. Cautioning her about some of the more serious side effects of steroids, including immune system compromise, Dr. A encouraged Judy to use the medication sparingly, backing off when her symptoms were under control.
Judy complied with this regimen, but it was not long before the steroid could not control her symptoms. When she called Dr. A to report this, he referred her to a local colleague—Dr. B—who biopsied Judy’s vulva and gave her a definitive diagnosis of LP. Dr. B switched Judy to a higher-potency steroid and an immune system modulator called tacrolimus. But despite the decreased risks associated with this second drug, Judy was encouraged to use the medications only when her symptoms were acute or troublesome.
The problem with this regimen, as the physicians from the VHC well knew, is that LP is an unpredictable and idiosyncratic condition, equally likely to flare in stressful and stress-free situations. For this reason, the vulvar experts at the VHC encouraged patients to use their medications liberally and regularly at first, in order to establish good symptom control; subsequent backing off would then be done under physician guidance and in order to establish whether particular stressors could be identified, predicted, and avoided. This seemingly small material difference—the amount of medication prescribed by a physician—is in part a reflection of a provider’s clinical orientation, with conservative clinicians wanting to use fewer clinical interventions, including pharmaceutical ones. But in Judy’s case, the amount of medication prescribed by Dr. Robichaud reflected an acknowledgment that her vulva was relevant and worth preserving—materially and vitally. Here, a less “conservative” approach toward disease management is simultaneously a queerer stance toward non-reproductive genitalia.
Under Dr .B’s care, Judy’s LP became so severe that her labia fused together. Although not as clinically urgent as the day she presented in the clinic—she could urinate normally and her vaginal opening was technically patent—Judy’s labia were markedly flattened in contour and she could not accommodate any vaginal penetration. Significantly, and according to Judy, she and her husband were having “difficulties” at the time, and their sexual activity had more or less ceased. Judy shared this with Dr. B, who subsequently recommended that Judy just “leave it closed” (referring to her vulva and vagina) unless and until she “needed it” again. Unaware of alternatives, and in a relationship with her genitals that was penetratively circumscribed, Judy agreed to the plan. It was just over a year later, at the start of the more dramatic urinary problems described above, that Dr. B referred Judy to the VHC, aware that she now likely needed corrective surgery.
The now of Dr. B’s decision indexes the differences in kind (rather than degree) between the VHC physicians—Drs. Robichaud and Erlich—and more generalist providers through which women without access to specialty care might come to understand their condition. At the VHC, new LP patients were not only encouraged to use liberal amounts of steroids and immune system modulators (like tacrolimus) in order to achieve good symptom control, they were also taught to understand the nature of their affliction. Importantly, this included the knowledge that neither medication would halt the (over)production of LP’s vaginal discharge. In fact, patients were taught to expect regular exacerbations, even with good pharmaceutical control, and that all people diagnosed with genital LP[viii] were at risk for labial contour change, erosion, and vaginal scarring. VHC patients and clinicians also knew that in cases like Judy’s, where the vagina fuses into a “classic” apple-core shape, surgically cutting through the fused area was the only way to restore so-called normal vaginal patency.
Drs. Robichaud and Erlich, in the role of vulvar experts, consistently and actively worked against disease progression. And though I attribute this practice to their distinct orientation toward vulvar well-being, it is also good preventive medicine. Managing a patient’s chronic condition as if it could worsen at any time is standard clinical practice in any specialty area, and most providers routinely do this with a wide variety of diseases (e.g., diabetes, hypertension). In this larger context, managing LP without planning for this kind of complication signals indifference towards the preservation of a symptomatic woman’s external genitalia.
Since LP typically afflicts women in their fifties and sixties, decades often reported as a woman’s “post-reproductive” years, an inflammatory obstruction of the vagina can become conflated with the allegedly unnecessary maintenance of robust labia and women like Judy can get to a point where doctors present “leaving [their vulvas] closed” as a reasonable option. In contrast, the physicians at the VHC encouraged patients to be proactive in maintaining their vaginal patency, or what they called “capacity.” This could be done either through regular vaginal intercourse with a partner or, preferably, with the regular (daily) use of a therapeutic dilator; Dr. Robichaud, for example, typically recommended that her patients keep a dilator inserted in their vaginas for two fifteen-minute sessions per day. While consensual and desired intercourse was also encouraged, dilators were preferred because they could be used more predictably, with greater patient control, and with far fewer problems during the sometimes acutely uncomfortable flares of LP.
This treatment plan, in contrast to the one initially presented to Judy, was derived from an investment in the anatomical and physiological well-being of the vulva and vagina, without regard to the “need” for vaginal penetration or sexual activity. Liberal prescriptions and applications of medications, close monitoring for undesirable side effects, careful instruction about the nature of LP, and treatment strategies geared toward maintaining as much vulvar and vaginal anatomy as possible were the material contours through which a patient at the vulva clinic came to experience her disease condition. These material strategies were obliged to a female genital imaginary in which optimal vaginal patency and vulvar contour were more than simply options to be considered: they were anatomical ground to be preserved.
Although their tools, in the form of immune system modulators, were virtually identical to one another, the physicians described here wielded them with distinct agendas regarding the use-value of female genitalia. Non-expert physicians’ lack of information about the condition and treatment of lichen planus evinces how the lines between ill-informed and substandard care often blur. In Judy’s case, these unstable boundaries—between conservative clinical management, medical misogyny, and casual disregard—evince a pernicious breed of vulvar inconsequence. The vulva with which Judy struggled to come to terms was a bodily instantiation of overlapping discourses regarding female sexuality, excess, reproduction, heterosexuality, “health” (Metzl and Kirkland 2010), and genital normativity. Ethnographic attention to these dynamic boundaries can reveal the disavowing and active nature of discourses that rob many women of a genital “capacity.” Without explicitly proclaiming that they “don’t give a shit” about the genitals of these women, institutionally located actors convey this sentiment in their everyday acts of evasion, erasure, and disparagement.
The last time I saw Judy was when she came to the clinic for a post-operative visit. She was bearing a mountainous basket of blueberry muffins, and thanking Dr. Robichaud for the genitals she’d “given back” to her. Of her (sexual) relationship with her husband, she told us, “We’re in a great spot; the best in thirty years.” But what I hope to have made clear is that Judy acquired far more than surgical correction from the vulva clinic physicians. She also acquired a vulva in which she was now invested. Through this novel imaginary, she could manage her symptoms as well as generate an expanding number of genital behaviors in which her vulva might engage. Her previous casual disregard for her genitalia, cultivated by at least two physicians and through an actively disinvested cultural milieu, had been replaced—at least for the time being—with the practice of getting up “pretty flippin’ early” for the dilator sessions that she knew would help to preserve her genital vitality.
Neurologist Wilder Penfield began mapping the somatosensory cortex in 1932, but it took almost twenty years before genitalia were included on his homunculus, the term he used to describe the brain’s proportional representation of various body parts. And though female epileptics were among the patients whose brains he studied, vulvas and vaginas were not depicted in the maps that eventually contained genitalia. I wonder about the genealogy of this absence—how it can be tracked from dermatologists who recommend “leaving [a vulva] closed” to cosmetic surgeons whose business models depend on widespread vulvar dis-ease. Taking care of women like Judy requires rendering vulvas thinkable irrespective of the penetrative terms of medical and heteronormative discourses. It also requires that we include disregard and disavowal in our list of symptoms to be resolved.
Christine Labuski is an anthropologist and assistant professor of Women’s and Gender Studies at Virginia Tech, where she also directs the Gender, Bodies & Technology initiative. Her book It Hurts Down There: The Bodily Imaginaries of Female Genital Pain, tracks the emergence and physiological realization of vulvar pain conditions in the contemporary United States.
[i] The names of people and places in this essay are pseudonyms.
[ii] Shell-Duncan, Bettina. 2008. From Health to Human Rights: Female Genital Cutting and the Politics of Intervention. American Anthropologist, 110 (2): 225-236.
[iii] Karkazis, Katrina. 2008. Fixing Sex: Intersex, Medical Authority, and Lived Experience. Durham: Duke University Press.
[iv] Terry, Jennifer. 1995. “Anxious Slippages between ‘Us’ and ‘Them’: A Brief History of the Scientific Search for Homosexual Bodies.” In Deviant Bodies: Critical Perspectives on Difference
in Science and Popular Culture, edited by Jennifer Terry and Jacqueline Urla, 129–69. Bloomington: Indiana University Press.
[v] Frueh, Joanna. 2003. Vaginal Aesthetics. Hypatia 18 (4): 137–58.
[vi] Fields, Jessica. Risky Lessons: Sex Education and Social Inequality. New Brunswick: Rutgers University Press, p. 168
[vii] Karkazis, p. 13.
[viii] Lichen planus can also affect oral mucosa.
A Critical Moment: Sex/Gender Research at the Intersections of Culture, Brain, and Behavior
FPR-UCLA 2016 Conference Summary
Part 2 of the FPR-UCLA conference on sex/gender, which was chaired by cultural anthropologist Gilbert Herdt, explored aspects of brain and behavior that are “fixed” by evolution and biology and other aspects that create, reflect, and respond to human social and cultural environments. Speakers in the first session addressed, in Darwin’s phrase, the “entangled bank” of biological, evolutionary, and cultural contexts of sex/gender differences in brain and behavior, while the second session offered a closer examination of “intimacies”– partnerships, marriage, sexual orientations, desires, and practices. A common theme throughout was the instability of the sex/gender binary or, as Carol Worthman observed, the “loss of easy dichotomies” more generally. Perspectives varied widely depending on level of analysis, but there was a general willingness to “work with and speak across difference” (Worthman).
For neurobiologist Donald Pfaff, who presented experimental research focusing on autism, sex is a biological category/variable. Other speakers were more willing to extrapolate from biology, and in so doing, challenge what Sarah Richardson referred as our “essentialist” understandings. For social neuroendocrinologist Sari van Anders, even a “quintessential” male hormone like testosterone can be deconstructed (van Anders, 2013). Another common theme was gender-role and sexual fluidity, addressed from evolutionary (Fessler), hormonal (Rilling, van Anders), and situational/contextual (Diamond) perspectives. Finally, field research by anthropologists (Borgerhoff Mulder and Boellstorff) in non-Western and virtual settings underscored human flexibility and adaptiveness.
The talks revealed significant advances in our understanding of the underlying mechanisms and dynamic aspects of sex/gender-related behavior and their exquisite attunement to historically and culturally specific environments. As conference keynote speaker Anne Fauto-Sterling reminds us, “neither the body nor experience is prior, but each acts continuously upon the other as individual patterns of behavior and of neuronal connections appear” (Fausto-Sterling, 2014, p. 315).
Prenatal and perinatal factors, including maternal stress, profoundly influence brain and behavioral development. Neurobiologist Donald Pfaff (“Neuroendocrine Mechanisms Underlying Prenatal Stress in Effects and Sex Differences in Autism”) focused on one way in which iterative development can go awry. Autism Spectrum Disorders (ASD) involve motor, language, and social deficits, with the latter considered “the core concept” of the diagnosis. ASD is both highly heritable and sex-related (4:1 male-to-female ratio, increasing to 11:1 “with the highest levels of intellectual capacity”; Gillberg et al., 2006, as cited in Schaafsma & Pfaff, 2014). Pfaff and colleagues study the sex-differentiating factors underlying male bias in ASD.
Pfaff briefly outlined several non-mutually exclusive pathways to sex-differentiation in brain function that may have possible implications for sex-specific susceptibilities in or protection from ASD: (1) via Y-linked genes, such as Sry, which, as Art Arnold explained, has both direct and indirect (via gonadal hormones) effects – i.e., some are directly expressed in the brain and play a role in catecholaminergic functions; (2) X-inactivation “in the service of dosage compensation,” which can be balanced or skewed; (3) genetic imprinting – the epigenetic silencing of one of the two working copies of a gene inherited from parents; and (4) other epigenetic-related factors (see Schaafsma & Pfaff, 2014, for more detail).
Male sex and the “3-hit” theory of autism”
Pfaff described the “3-hit” theory of autism as an interaction between: (1) androgenic hormones; (2) early stress; and (3) one of the genetic mutations associated with autism in males, such as the CNTNAP2 mutation. Regarding Steps 1–2, testosterone affects arousal neurons in the forebrain; which results in greater activity in their ascending pathways, especially increased deposition of norepinephrine, dopamine, and serotonin in the amygdala. The amygdala becomes “supersensitive” and responds more acutely to social stressors, pre- and postnatally. Chronic overactivation in response to stress leads to social anxiety and ultimately the social avoidance characteristic of ASD.
Pfaff and colleagues use a mouse model to test exposures to prenatal stress/no stress on a 0–3 event scale in Cntnap2 knockout and wild-type mice. (NB: They used maternal immune activation for prenatal stress because infection in pregnancy predisposes to autism.) The researchers found differences between the 0-hit and 3-hit mice based on three tests: ultrasonic vocalizations, social recognition (a series of home-cage exposures to an intruder mouse, followed by an exposure to a novel mouse), and social approach in a three-chambered cage. Interestingly, there was a slight increase in social approach for the 3-hit mice, and no differences in anxiety between wild-type no-stress females and the male mice in an open field test with various numbers of hits. The researchers sacrificed the animals and found significantly lower expression of mRNA receptors for stress-related corticotropin releasing hormone (CRH-R1) in the left hippocampus in the 3-hit mice. In the final piece of the story, the researchers harvested mRNA and found developmental sex differences in mRNA levels of connexin-36, which is important for mediating electrical synapses and promoting neuronal synchrony. Males express more connexin-36 in the amygdala than females, which has possible implications regarding the sex-related (male) amygdala hypersensitivity of the 3-hit model.
This emerging body of research focuses on the underlying neuroendocrine and epigenetic causes of the sex-related differences in ASD and also links the social behavior consequences (e.g., anxiety) to the number of “hits” over time, underscoring the iterative nature of sex-differentiation, a major theme of this conference.
Biocultural anthropologist James Rilling (“Neural, Hormonal, and Genetic Correlates of Human Paternal Behavior”) shifted the morning’s focus from mother–infant dyads to fatherhood. As Ruth Feldman (2015) observed in a recent review, parenting may be the most delicately poised among all social phenomena between evolutionarily conserved components on the one hand and “the greatest plasticity” on the other. Fathers are less well studied, but Rilling’s research suggests significant plasticity in adult male as well as female brains in response to caring for offspring.
“Mothers and others”
Some biologists refer to humans as “cooperative breeders,” that is, the source of care and feeding of offspring comes from both “mothers and others” (Hrdy, 2009), albeit with significant cultural and interfamilial variation. According to Rilling, in modern Western societies that often consist of isolated nuclear families, fathers are often the greatest source of help to mothers. Emerging evidence indicates that paternal involvement is associated with “multiple positive developmental outcomes in children” in Western settings, he said.
Rilling’s talk addressed two questions: “Why is it that some men are more involved as fathers than others? Can we identify variables that are correlated with or influence paternal involvement?” His biocultural approach is based on an evolutionary and life-history perspective, more specifically for the purposes of his talk, on variation in and tradeoffs between investing energy in mating and in parenting.
Rilling’s research focuses on the hormonal (testosterone, vasopressin, oxytocin, and prolactin) and neural (mesolimbic dopaminergic pathway) mechanisms regulating behavior in fathers of young children (ages 1–3). In rats, the medial preoptic area (MPOA) of the hypothalamus, which is subject to the influence of steroid hormones, regulates parallel systems for pup approach/avoidance. Bathing the area in hormones activates the mesolimbic dopamine system (including the ventral tegmental area in the midbrain, the nucleus accumbens [part of the ventral striatum], and the medial orbitofrontal cortex), “a classic reward system pathway,” enhancing maternal motivation to nurture.
Rilling and colleagues recruited three groups of men: nonfathers, more involved fathers, and less involved fathers of children (ages 1–3) to study both hormone levels and brain function in response to visual child-related and sexual stimuli in order to explore tradeoffs between mating and parenting. Fathers had lower levels of plasma testosterone than nonfathers. They were also about 20 pounds heavier than nonfathers, putatively reflecting a significant negative correlation between testosterone and body fat. Fathers also had significantly higher levels of plasma oxytocin than nonfathers. In fathers baseline plasma oxytocin appears to enhance certain aspects of caregiving, such as stimulatory parent-infant contact (Feldman, 2012; as cited in Young & Rilling, 2014).
Rilling and colleagues also compared the more and less involved fathers (using the Parental Responsibility Scale). They noted weak negative correlations between testosterone and instrumental caregiving and testes size and caregiving, although the relationship between testosterone and testes size was not statistically significant.
In terms of brain function, fathers viewed images of their own children (with happy, sad, and neutral facial expressions), unknown children, unknown adults, and sexually provocative stimuli. The investigators also primed an empathic response from the fathers by asking them to “try to share the emotions of the person in the picture.” Across the board, fathers had stronger responses than nonfathers to the images of unknown children in such areas as the medial orbitofrontal cortex (part of the “reward” system) and the temporoparietal junction, which plays a putative role in theory of mind, or the ability to make inferences about the mental states of others. Across the board, the nonfathers had stronger responses to the sexually provocative visual stimuli, particularly in brain regions related to goal-related motivation and reward (e.g., the nucleus accumbens).
More involved fathers had higher activation of the ventral tegmental area (VTA), part of the network motivating approach to offspring in the rat studies, when viewing own children. There was also a more robust relationship – a negative correlation – between testes size and VTA response to viewing images of own children. Finally, fathers listened to infant cry stimuli, which among fathers notably activated the anterior insula (AI) bilaterally. Among other functions, the AI tracks sympathetic autonomic arousal. “Less involved” fathers had a lower or higher AI response, respectively, than fathers who were “most involved in instrumental caregiving” suggesting empathic under or over-arousal in the less involved group (Young & Rilling, 2014).
The final speaker of the afternoon, anthropologist Monique Borgerhoff Mulder (“Gender Roles in Mpimbwe: Re-evaluating Bateman’s Gradient”), explored the effects of environment on intra- and extra-marital relations among the Pimbwe of the Rukwa Valley in western Tanzania. Her data challenge universalist gender roles drawn from standard sexual selection theory.
Due to conservation strategies, Pimbwe men can no longer legally hunt or fish in what is now Katavi National Park, and job scarcity makes education an unsatisfactory strategy for making a living in the Rukwa Valley. As a result, Pimbwe women are relatively powerful players within the marriage market. Not only do women control much of the gardening, environmental factors – such as unreliable rainfall, agricultural pests, depredating wildlife, and theft from other villagers – have compelled them to engage in other economic activities that can help offset intermittent food shortages. “Under these tough economic, ecological, and environmental conditions marriage is problematic,” Borgerhoff Mulder continued, and finding a good provider is critical. Marital decisions are particularly important because Pimbwe are increasingly unable to rely on cooperation from neighbors and kin (Kasper & Borgerhoff Mulder, 2015); cooperation with a marital partner becomes key, placing a lot of pressure on this relationship. Against this background Borgerhoff Mulder analyzes the considerable variability in gender roles and a strong prevalence for marital systems that are “very flexible.” Monogamy, serial polygyny, and serial polyandry are common arrangements; extramarital affairs also abound (if a pregnancy results, it typically leads to marriage), and there is increasing polygyny.
“Why do Pimbwe men suffer from multiple spouses?”
Networks of various marriages (which the Pimbwe effectively define as pairs who cohabit), divorces, and extramarital mating patterns produce outcomes that provide an exception to Angus J. Bateman’s (Arnold 1994) foundational claim that number of mates will have stronger effects on the fitness of males than females. This famous “Bateman’s Third Principle” follows from his first two principles – that males will have higher variance in fitness (measured as number of surviving offspring) than females, and that males will have higher variance in the number of their mates than females. All of these differences are predicated on the fact that, by definition, males have smaller gametes than females.
Using longitudinal, cross-sectional, demographic, and economic data for all households in one village in the Rukwa Valley, Borgerhoff Mulder examined variation in reproductive success (Bateman’s first principle) and mate number (his second principle), before modeling the effects on reproductive success of the number of an individual’s mates (the third principle). Regarding reproductive success below age 40, the variance for men and women was “pretty similar.” In accordance with Bateman’s theory, as they aged beyond 40, men had a higher variance than women. Similarly mate number was equally variable between the sexes. But regarding Bateman’s third principle, Borgerhoff Mulder found that having multiple spouses had a positive effect on mating success in women (i.e., production of surviving offspring) and a negative effect in men.
The Pimbwe challenge the “conventional view of promiscuous, undiscriminating males and coy, choosey females” (Brown, Laland, & Borgerhoff Mulder, 2009). Some Pimbwe women can “discard” – and benefit from discarding – husbands who are not good providers, in poor health, or just considered “lazy.” According to Borgerhoff Mulder, these women tend to be hard workers who can afford “to cycle through multiple marriages.” Despite the fact that some Pimbwe maintain successful polygynous marriages over a number of years, many Pimbwe men face the opposite fate. Reproductive success falters as they cycle through marriages, unable to keep their spouses from leaving them; they seem to make poor fathers. Borgerhoff Mulder theorized that the constant shift between multiple spouses by females, and the higher variance in mate quality that accompanies it, reflects the value system around pair bonding. That is, rather than aligning with conventional accounts, which suggest that in societies where divorce occurs, “pair bonds” must not be “very important,” Borgerhoff Mulder proposed the opposite: “Divorce may actually be an indicator of the importance of pair bonds” rather than their non-importance. That is, in societies where pair bonding is valued highly, stakes are higher, and therefore there is higher pressure to cycle through multiple spouses until the best one is found.
Evolutionary anthropologist Dan Fessler (“An Evolutionary Perspective on Sexual Orientation, Same-Sex Attraction, and Affiliation”) opened the second day of the conference with an evolutionary puzzle. Given the role of reproductive success in natural selection, “if there is any heritable contribution to sexual orientation, how have alleles for exclusive same-sex attraction persisted over evolutionary time?”
Human and animal studies find substantial heritability in sexual orientation, including same-sex attraction, which is most likely the effect of a number of genes and/or epigenetics, both of which are subject to natural selection. Existing (partial) explanations, such as pleiotropy or kin selection, focus on male homosexuality and “leave lots of variance unexplained.” Fessler focused on “overdominance,” or the “heterozygote advantage” of having different alleles of the same gene, theorizing that human sexuality is multifunctional. Here, Fessler was careful to distinguish between sexual orientation – “[culturally] patterned sexual desire that may lead to sexual behavior with members of one or the other sex” (Fleischman, Fessler, & Cholakians, 2015), which is closely related to gender, and same-sex attraction, his primary interest, which may or may not align with sexual orientation.
It is difficult to get precise numbers on same-sex sexual behavior; there are “huge” cross-cultural differences. For example, in some cultures same-sex sexuality is unknown, in others it is widespread, and in still others – as in the case of the Sambia – it is “required ritually.” He suggested that, “in the absence of norms prohibiting same-sex behavior, it apparently arises spontaneously,” often during sexual development.
Same-sex sexual behavior occurs across species, although regularity and context vary, and may have two primary nonreproductive functions: one signifying affiliation (e.g., the alliance-enhancing same-sex bonds among the bonobos) and the other dominance (e.g., dogs mounting). Further, Fessler argued that “plasticity and flexibility” in sexual behaviors and corresponding attraction can be subject to natural selection. Returning to the concept of overdominance and particularly “multifunctional sexuality,” he cited work suggesting that same-sex sexual behavior supports the kind of alliance formation Herdt described in his talk. And note, he continued, that “this is compatible with existing evidence suggesting that sexual orientation and sexual psychology are separate things” in that the “target has shifted” to the same sex but the sexual psychology remains the same. Fessler also discussed the fitness-enhancing aspects of affiliative bonds. In nonhuman primates, “social bonds enhance survival and reproductive success.” Alliances were also vital in small-scale human societies for a number of reasons (for enhanced success in violent coalitional conflict, as a buffer against food shortfalls, to facilitate alloparenting, and as insurance against illness and injury), Fessler said.
“Where are all the bisexuals?”
Using Darwin’s finches as an example, Fessler showed how three allele pairs yield seven genotypes and a continuously distributed trait, or bell-shaped curve. He also noted the extent to which environment affects the expression of genes: “when the effect of each locus is small, environmental variation will blur genetic differences.” Given the multiple genetic contributions to same-sex arousal, the normal distribution of phenotypes would assume a bell-shaped curve, ranging from a committed same-sex phenotype with no reproduction “but lots of allies” to a committed opposite-sex phenotype with reproduction, but “fewer allies.” According to Fessler, most people would be “flexible” between the two. The “flexible” phenotype “accrues benefits of both same-sex contact and reproduction, depending on context.” Cultural pressures tend to shift normal distribution toward the right. His take-home message was that, aside from “obligate” same-sex and opposite-sex individuals on the far left and right of the bell curve, “for most people, the cultural context and the socialization experiences probably do profoundly influence their self-concept and their experiences of sexuality.”
The next speaker, social neuroendocrinologist Sari van Anders (“Social Neuroendocrinology, Gender/Sex, and Sexual Desire: Testosterone as Socially Constructed and Evolved”) emphasized the iterative or bidirectional relationship between hormones and behavior and, above all, the importance of context. Their dynamic interactions occur within “a space that is both social . . . and responsive to evolution.” Van Anders’s approach to “gender/sex” focuses on the interaction of the two constructs. “We can think of sex as relating to femaleness, maleness, and sexual diversity,” she said. “[S]ex falls into the part of the equation that is evolution. And we can think of gender as falling into the part that is social context and that has to do with gender diversity, femininity, and masculinity. . . . [B]y gender/sex, I mean I’m studying whole men or whole women or whole gender/sex diverse people.”
Van Anders stressed the importance of studying “human specificities,” which often get overlooked, particularly the integration of social constructions (“shared cultural understandings that vary by place and time”) and biological constructions (including contextually sensitive steroid hormones like testosterone), which modify one another. The remainder of her talk focused on testosterone and sexual desire. She described “testosterone” as both a biological material and a social construction. Her point is that “the stories we tell ourselves” about testosterone pretheoretically influence how scientific research is conducted. For example, one of the tacit assumptions of testosterone is that it promotes masculinity and is negatively related to femininity. Van Anders proposed a different model for understanding variability in testosterone based on a broader definition of sexuality that extends beyond reproduction. Her model (the Steroid-Peptide Theory of Social Bonds) suggests “an overarching social role [that is] similar in women and men,” one in which low testosterone is linked to nurturance (“loving, warm contact”) and high testosterone to competition (“acquiring and keeping resources”; see van Anders et al., 2011; van Anders, 2013; Goldey & van Anders, 2015), which brought to mind James Rilling’s earlier talk on life history tradeoffs.
“There are many constructions of desire”
Van Anders discussed the concept of “sexual desire,” taking apart some of its socially constructed assumptions (e.g., sexual desire is prototypically male, dyadic, orgasm-focused, and testosterone-fueled) and drawing out its extraordinary sensitivity to context and particular functions. A straightforward link between testosterone and sexual desire in men or women is tenuous at best. Instead, “there are many constructions of desire,” which have both positive and negative correlations with testosterone. In her nurturance–competition model, nurturance/low testosterone is linked to closeness, pair bonding, and self-comfort, whereas competition/high testosterone is linked to erotic pleasure, power, orgasm, and jealousy. The idea is that “the expectations of erotic pleasure and orgasm actually can differ based on social location and sexual experience and other factors.” For example, in heterosexual women, researchers found a negative correlation between dyadic sexual desire and testosterone, suggesting the women’s “desire” is more closely related to nurturance than expectation of orgasm. The researchers found no correlation between sexual desire and testosterone in men, which also ran counter to our pretheoretical assumptions.
Next, developmental psychologist Lisa Diamond’s talk (“Where Does Sexual Orientation Reside?”) challenged the once-entrenched belief in a binary, innate, and stable distinction between same and other-sex “orientation” (“the general predisposition to experience sexual attraction”), beginning with the observation that individuals who are sexually oriented to the opposite sex are capable of having same-sex desires, and vice versa. Longitudinal studies have uncovered considerable “plasticity” or “fluidity” in same-sex and other-sex attractions and behavior (Diamond, 2012), particularly among women. Diamond defined sexual fluidity as “situational and contextual variability in the experience and expression of same-sex and other-sex sexuality over the life course.” To address this greater complexity, Diamond conceptualized same-sex sexuality in terms of “constitutional same-sex sexuality” and “facultative same-sex sexuality.” The former is rooted in “same-sex desires stemming from one’s orientation.” The latter refers to “same-sex desires facilitated by situational or environmental factors, which can vary significantly in women over time.” Elsewhere, Diamond has argued that this variability “may constitute a fundamental feature of female sexual orientation” and may be particularly amenable to a dynamic systems theoretic approach (Diamond, 2012).
Diamond pointed out the difficulty of differentiating between constitutional same-sex sexuality (a “gold star lesbian”) and a situational lesbian or “lesbian until graduation” on the basis of behavior. Even physiologically, “most women possess ‘nonspecific’ patterns of genital arousal” to same-sex and other-sex stimuli, “regardless of their own self-reported sexual orientation” (Diamond, 2012, p. 76; citing Chivers & Bailey, 2005; Chivers et al., 2004; Suschinsky, Lalumiere, & Chivers, 2009). (It’s important to note that “women are more likely than men to show discrepancies between their physiological and subjective arousal [for review, see Chivers et al., 2007],” and these discrepancies are not well understood.)
Diamond’s recent study looked at a different measure of desire: shifts in the responses of women of various self-identified orientations to sexual stimuli during ovulation, when estrogen levels peak. The diversity of responses by women of various sexual orientations suggests the need for a “biopsychosocial understanding” of how genetically influenced constitutions “interact with facultative environments, which range from microlevel processes – individual and dyadic relationships – to broad cultural environments, to produce different phenomenologies of desire, arousal, and behavior and then the pleasure that is taken from behavior.” She characterized “each individual desire” as “its own phenotype because it represents a very specific and dynamic interaction between genetically influence processes, biologically mediated processes, and, obviously, socioculturally facilitated and embedded processes. . . . [S]exual orientation is neither the genetic part of same-sex sexuality nor the socially categorized part,” she continued, “If [we] want to make a distinction between constitutive and facultative desires, we have to understand the constellation of these different inputs and outputs over time.”
Cultural anthropologist Tom Boellstorff (“Technology and Globalization: Emergent Intersections of Culture, Brain, and Behavior”) discussed two long-term research projects focusing on globalization and technology: one on gay, lesbi, and waria Indonesians and the other on culture in virtual worlds (in particular, in the virtual world Second Life). Boellstorff began by remarking on the “inability to fuse or separate sexuality and gender,” which reflects the broader issue of the nature/culture or biology/culture dichotomy that “still dogs us.” For Boellstorff, “long-term engagement with a field site” in Indonesia “allows you to track forms of change . . . how forms of movement and mobility are shaping culture and shaping sexuality and gender.” Both people and ideas are “moving.” The language is incorporating new words (gay, lesbi) that suggest homogenization but also “new forms of difference.” However, like sex/gender being “gay and Indonesian” or in most cases “gay and Muslim” “never fuse but they never become separate; “[i]t’s about the juxtaposition that nonetheless becomes part of everyday experience.” For example, gay and lesbi Indonesians are often married heterosexually – the two worlds needn’t resolve into one, though forms of oppression shape these dynamics. The fragmented globalization of sexual identities is exemplified by the fact that the “coming out” metaphor is quite rare in Indonesia: the more common term, “opening” to the gay, lesbi, or heterosexual “worlds,” has different implications for selfhood and community.
What is changing? Space and place
For Boellstorff, technology, and engagement with digital media in particular, serves as a means to challenge binary thinking, not only sex/gender, gay/straight, real/virtual, but also – as van Anders reminded us – biology/social constructions. His second research project is an ongoing ethnography of Second Life, a 3D virtual world whose members – via avatars – can fashion a less socially or physically encumbered identity, interact with one another in real time, immerse themselves in a range of social activities, and grow socially meaningful communities. In his 2015 preface to Coming of Age in Second Life (Princeton University Press, 2008), Boellstorff writes about an 85-year-old friend with Parkinson’s who is also a Second Life resident. For Fran, both bodies are real – her physical body (with Parkinson’s) and her virtual body, which “made it possible to wear a ball gown,” whirl around a dance floor with Tom, and run a support group in a wooden cabin on Namaste Island for other Second Lifers living with Parkinson’s. Although Boellstorff urged the audience to look beyond the binarism of real/virtual worlds, neither do they resolve into one. Instead, he stressed their coexistence and equal importance to ethnography.
Overall, the transdisciplinary and interdisciplinary sex/gender perspectives in Part 2 challenged many of our theoretical presuppositions about what is fixed by nature and shed light on what is changeable and changing, including how we study sex and gender. As one of the speakers observed, bringing biology and culture together “makes for transformative science.”
Constance Cummings, PhD, is project director of the Foundation for Psychocultural Research and a co-editor of Formative Experiences: The Interaction of Caregiving, Culture, and Developmental Neurobiology (CUP, 2010), and Re-Visioning Psychiatry: Cultural Phenomenology, Critical Neuroscience, and Global Mental Health (CUP, 2015).
Libby Udelson is a recent graduate of the University of California, Berkeley, where she received a BS in Environmental Economics & Policy and an AB in Development Studies.
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(On behalf of the First Thousand Days Research Group (University of Cape Town))
“Good nutrition in the first 1000 days between a woman’s pregnancy and her child’s second birthday sets the foundation for all the days that follow.”
“The First 1,000 Days of being a parent are now accepted to be the most significant in a child’s development.”
“Researchers have identified the first 1,000 days of a child’s life—from pregnancy through a child’s 2nd birthday—as a critical window of time that sets the stage for a person’s intellectual development and lifelong health.”
– Lucy Sullivan, National Healthy Mothers, Healthy Babies Coalition
The focus of this series is the “the first thousand days”, a new field of enquiry that is radically reshaping understandings of health and heredity, with material consequences for policy, publics and concepts of life. The thousand days between conception and a child’s second birthday is presented in contemporary epidemiology and public media, shaped by new knowledge in neuroscience, epigenetics and Developmental Origins of Health and Disease (DoHaD) research, as a critical period that determines future health and potential. This imaginary – as captured by the excerpts from non-governmental organizations above – has been the object of study for The First Thousand Days Research Group at the University of Cape Town, chaired by Professor Fiona Ross, since mid-2013. Under the rubric of “the first thousand days”, we have conducted ethnographic research across a set of inter-related themes to interrogate the logics and implications of this imaginary. The sites of our research include antenatal clinics, soup kitchens, laboratories of reproductive technologies, places of worship, neonatal units, breast milk banks, middle class settings and informal settlements. The work currently spans research across Southern Africa, and draws on historical and contemporary accounts of parenting, reproduction and social relations particular to this context.
Our work has benefitted from thinking with a range of analytic frames including STS and postcolonial approaches as well as conventional ethnographic and historical research methods. Thus far we have found that “the first thousand days” offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well being but also how life is conceptualized by different disciplines. This Somastosphere series will speak to the complex questions that new attention to the early life period within epigenetic framings provokes, particularly in contexts of the global South.
This first installment offers a brief introduction of the First Thousand Days as a contemporary global health project. Later articles will highlight findings from our ethnographic and other explorations and suggest areas for future research.
Global health and visions of the future: the first 1000 days of life
The 1000 days campaign is a transnational project orchestrated by a diverse set of actors within the “global health” framework. The focus on “the first thousand days” originates in the 2008 Lancet Series on Maternal and Child Undernutrition, which presented the rationale for the thousand-day period in a review of cohort studies from India, the Philippines, South Africa, Brazil and Guatemala. This data, based on World Health Organization (WHO) indices for child growth standards, suggested that future human capital – captured in “height, school achievement, economic productivity and birth weight of offspring” – is best predicted by height for age at two years, hence the focus on the period from conception until age 2, or (more catchy) the first thousand days (Victora et al. 2008). The Lancet’s 2013 follow up series adds that in addition, “the first thousand days” impacts potential future burdens of overnutrition and chronic disease. These recommendations formed the basis for the United Nations’ (UN) Scaling Up Nutrition (SUN) program and the 1000 Days: Change a Life, Change the Future campaign. The one thousand day span has become the critical window for intervention for both improved nutritional outcomes as well as cognitive development. Today, this is an explicit focus for the post-2015 development agenda, directing policy in fifty countries and supported by a network of public and private partners, the largest of which is the Bill and Melinda Gates Foundation. Corporations like Nestle and Nutricia have also readily taken up the project.
The first one thousand days concept is based on life course epidemiological models that incorporate epigenetics, DoHaD, and nutrition transition theory. Developmental programming theory has its origins in a series of studies that recognized the role of poor socio-economic status in early life in predicting for adult disease. Most famously, Barker and Osmond linked poor childhood nutrition in poor English counties to an increased risk of heart disease in adulthood (1986). This work produced the ‘thrifty phenotype hypothesis’ (also known as the fetal origins hypothesis), which contends that intrauterine nutritional constraints cause fetal adaptations that constrict growth and prepare the fetus for a restricted food environment. This confers a fitness advantage if the external environment is as predicted, but confers increased disease risk if the environment turns out to be abundant (Hales and Barker 1992: 599). Hales and Barker defined ‘programming’ as a long-term effect on morphology or function that results from conditions during critical windows of development (ibid: 596). Animal models and epidemiological studies in many settings have since supported developmental programming theory (Delisle 2002). This phenomenon has also been described as “fetal impression” (Paneth 1994), “genomic imprinting” (Signorello and Trichopoulos 1998), “metabolic imprinting” (Waterland and Garza 1999), and “induction” (Bateson 2001). This growing field is now referred to as “Developmental Origins of Health and Disease” (DOHaD) research.
Barry Popkin developed nutrition transition theory (1993) as an extension of demographic (Thompson 1929, Caldwell 1976) and epidemiological (Omran 1971) transition theories to illustrate how diet and energy expenditure, and their correlating disease states, have shifted in concert with population and economic changes. Many developing countries display a “nutrition transition paradox” (Doak et al. 2005) that is characterised by a dual burden of obesity and undernutrition at the national, community and even household level (Popkin et al. 2011: 10). Developmental biologists posit that nutrition transition sets up the conditions that program for adult chronic disease. Under-nourished mothers give birth to infants programmed for an environment of restricted nutrition, but as the nutrition transition unfolds, this generation develops obesity and chronic disease as a result of environmental mismatch (Gluckman and Hanson 2006). Maternal diabetes and obesity in the second generation predict for the same conditions in their offspring via overnutrition pathways (Gluckman 2010: 14).
DOHaD researchers have readily taken up epigenetic theory as a means for explaining these observations. Conceived by Waddington (1942), the term epigenetics is a synthesis of genetics and the Aristotelian concept of epigenesis, which emphasized the qualitative and continuous nature of development. Waddington’s understanding of the developmental trajectory is best illustrated by his “epigenetic landscape” (1957). This consists of a network of valleys and hills on an inclined plane that must be negotiated by a marble that rolls through the landscape via a series of binary options. The marble represents the developmental outcome; the final path taken is a function of gene-network interactions modulated by environmental factors (Slack 2002: 891). Waterland likens nutrition to the “wind” that blows over the epigenetic landscape to influence the final developmental pathway (2006). The merging of DOHaD research and epigenetics has thus given rise to an “epigenetic epidemiology” (Waterland and Michel 2007) that is increasingly framed within life course perspectives (Godfrey et al. 2010). Contemporary epidemiological life course theory thus employs theories of nutrition transition and developmental programming to understand the aetiology of noncommunicable disease in developing settings. Intervening in early life promises gains in both early childhood – lower rates of undernutrition, stunting and infection – and long term gains via developmental programming mechanisms – lower risks of obesity, cardiovascular disease, diabetes (non-communicable diseases or NCDs).
The appeal of the “first thousand days” thus lies in its perceived dual impact on a present and future disease burden, and its measurable outputs in economic indices. As one epidemiologist described it to me, intervening in the first thousand days offers “bang for your buck.” The one thousand days focus on human capital formation is captured in indices including adult height, educational achievement, income, and offspring’s birth weight. One can consider this choice of indicators, following Didier Fassin, as “qualitative data offering political insights as to how societies produce and reproduce themselves” (2012: 109; Canguilhem 1978). The perceived cost-effectiveness of interventions aimed at the early life period expresses an economic logic that appeals, in Siddiq Osmani and Amartya Sen’s assessment, to “hard-nosed economic calculus” (2003), a worthy rationale in a political and scientific milieu which privileges measurable economic outcomes and the creation of capital. As such, the “1000 days” global health project might be viewed as an instantiation of how the epistemology of market logics comes to bear on the life sciences and the public health interventions they inform – what Kaushik Sunder Rajan terms “the capitalization of life” (2012: 1). In addition, “the first thousand days” represents a present-day articulation of a longstanding focus on mothers and infants in public health frameworks – a group which carries significant currency in the humanitarian imagination.
Close ethnographic enquiry is warranted to examine how changing notions of life and value come to bear on the ordinary, and “the first thousand days” offers one prism through which this might be viewed. An emerging literature across philosophy, STS and anthropology engages new forms of life and its governance (Merry 2011, Sunder Rajan 2012), and the implications of DoHaD and epigenetic science for politics and policy, and concepts of life, health, nature and nurture (for excellent overviews, see Pickersgill et al. 2013, Meloni and Testa 2014; for a comprehensive edited volume see Richardson and Stevens 2015). Less attention has been paid so far to the intersection of these in what we might label “epigenetics and the everyday”. What do DoHaD and epigenetic discourses – captured within the rubric of “the first thousand days” – mean for reproductive technologies, for nutrition interventions, for the law, for understandings of time and inheritance, for the making of families, for the meaning of food security, for understandings of health and life in all its imbrications?
More specifically – what is revealed when such questions are localized? How do understandings of, and interventions in early life, reflect a local milieu, and how might we attend to this? Our research group approaches this question from multiple perspectives across southern African contexts. In these settings, the logics and implications of the 1000 days’ imaginary must be read in conjunction with colonial histories and postcolonial concerns, regional political economies, and the economy of images of mother and child so central to humanitarian reason in Africa (Vaughan 1991, Fassin 2012). The first thousand days construct offers one window onto the ways in which new understandings of the neuroscience of cognition and the developmental origins of health and disease – now commonly framed as epigenetic – come to bear on, and interact with, existing framings of health, to reconfigure policy and healthcare across global and local networks, and to remake temporalities, citizenship and relationships. Across the work of our research group, the first thousand days is a fruitful object of study for considering the everyday ways in which new science and technology comes to bear on life and life-giving in the postcolony. We hope that our reflection and contributions make for an enjoyable and thought-provoking series.
Michelle Pentecost is a DPhil candidate in Anthropology at the University of Oxford (Green Templeton College) under the supervision of Professor Stanley Ulijaszek, and an affiliate of ‘The First Thousand Days’ research group at the University of Cape Town. She is currently completing her doctoral thesis, titled “The First Thousand Days: Global Health and the Politics of Potential in Khayelitsha, South Africa.” Michelle is a practicing clinician with special interests in perinatology and internal medicine. On completion of her doctorate, she aims to practice at the intersections of medicine, public health, anthropology, and medical education.
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Starting April 15, members of the American Anthropological Association will be able to vote on a resolution which proposes a boycott of Israeli academic institutions. In this “debate forum,” we present two pieces, one arguing for the boycott, one against, both written by and addressed to medical anthropologists. We encourage readers to join the debate or air their views in the comments sections of either piece, or this introduction.
Sherine Hamdy, Shirley Lindenbaum, Julie Livingston, Margaret Lock, Eileen Moyer, Vinh-Kim Nguyen, Elizabeth Roberts, Michael Montoya, Kristin Peterson, Miriam Ticktin
On Immunity: An Inoculation
By Eula Biss
Graywolf Press, 2014, 205 pp.
The End of Normal: Identity in a Biocultural Era
By Lennard J. Davis
University of Michigan Press, 2013, 155 pp.
Autism and Gender: From Refrigerator Mothers to Computer Geeks
By Jordynn Jack
University of Illinois Press, 2014, 306 pp.
Disability themes have become an increasingly central figure in the media, popular culture, and everyday life. Rates of disability diagnosis have risen sharply among children in the U.S. in the past decade. Disability has exploded in the popular press in such acclaimed recent books as Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity, Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, Akhil Sharma’s Family Life, and Lisa Genova’s Still Alice. Similarly, scholarship on disability has gained new momentum. Somatosphere’s Inhabitable Worlds series, edited by Michele Friedner and Emily Cohen, featured cutting-edge writings on the study of disability within the social sciences, and the program for the 2015 American Anthropological Association’s annual meeting included over 50 papers, panels, and posters on disability themes. Without question, disability has emerged from the margins of scholarship and public interest.
Three recent books – Eula Biss’ On Immunity: An Inoculation, Lennard Davis’ The End of Normal: Identity in a Biocultural Era, and Jordynn Jack’s Autism and Gender: From Refrigerator Mothers to Computer Geeks – make important insights regarding the contours and textures of disability in the contemporary U.S. Biss, an essayist and social critic, offers a fascinating analysis of the persistent anxiety surrounding childhood vaccinations, particularly among a vocal minority of parents who oppose vaccines entirely. Davis, a scholar of Disability Studies, makes a compelling and provocative argument that the concept of normal has given way to a seemingly more inclusive umbrella of diversity, yet disability remains excluded. Jack, a rhetorician, has written the first book-length examination of the role of gender in autism. Together, these writers make important contributions that are long overdue and will prove useful to both academic and applied audiences. Themes of race, class, and gender are addressed to varying degrees, a critical shift from the tendency to flatten disability intersectionality. Ultimately, all three authors speak to questions of authority, risk, intimacy, and fear, enriching contemporary understandings of disability in different, yet overlapping, ways.
In On Immunity: An Inoculation, selected as a New York Times Book Review top 10 books of 2014, Biss uses the controversy surrounding childhood vaccinations as a jumping off point to explore broader notions of risk and the deeply social nature of individual health. Her writings contain a sweeping collection of musings on the embodied, historical, political, and social dimensions of vaccination in the U.S. Why, she asks, do deeply rooted and contentious fears about vaccine safety persist despite an overwhelming lack of scientific evidence to support such claims? (This piece by Sharon Kaufman offers an anthropological perspective on similar questions.) To answer this, she turns to history, philosophy, medicine, ethics, mythology, anthropology, popular media, and her own experiences as a mother.
Biss frames inoculation as a gamble. We know that vaccines can provoke serious reactions in a tiny portion of the population; we know, too, that the introduction of standard vaccines dramatically improved child mortality rates over the course of the last century. The question, of course, is whether this gamble is worth it. Despite the successes of modern public health, the fact remains that we cannot inoculate ourselves from doubt, particularly in a climate of widespread and persistent medical folklore of the dangers of vaccines. The vaccine is not simply an event – an isolated shot or jab – but rather a continuous process protecting the health of the patient and also the social body. In Biss’ framing, vaccinations become an ethnographic object, around which multiple fears, associations, anxieties, and beliefs converge.
“Immunity,” she writes, “is a shared space – a garden we tend together” (163). Vaccines are intrinsically social. By maintaining herd immunity levels, we protect the broader public good – including people who cannot be vaccinated for one reason or another. Per this logic, vaccinations are an embodied social contract that both emerges from and obscures the permeability of our own bodies. As she explains: “we are protected not so much by our own skin, but what is beyond it. The boundaries between our bodies begin to dissolve here” (20).
Biss deftly navigates the role of socioeconomic class in terms of the vaccine debate. Indeed, as she points out, unvaccinated children tend to have mothers who are white and have higher levels of education, and the families have higher incomes and tend to be geographically clustered (see, too, this piece by anthropologist Emily Brunson). In contrast, Biss cites CDC data showing that undervaccinated children are more like to have mothers who are younger, single, Black, and lower income. These demographic trends illustrate a critical distinction between vaccination trends as a product of choice versus access. This raises critical questions regarding who can claim the privilege of rejecting vaccines. Who is able to opt out of standard public health measures, by what means, and under what authority? (For a case study of vaccine refusal in a particular school population, refer to Elisa Sobo’s recent article in Medical Anthropology Quarterly.)
While Biss states clearly that she supports vaccination, she is less interested in the moral or ethical implications of vaccine fears than in how to make sense of their persistence. As she asks, is risk perception about actual quantifiable risk or is it really about immeasurable fear (37)? Our deepest fears are, for Biss, informed by complex webs of history, power, stigma, economics, myths, and shared nightmares (37). They are fundamentally intimate and unavoidable, yet they shift according to the particularities of the moment. And, for Biss, they include disability.
Biss gives readers an overview of the history of the current vaccine fears (discussed also by Jack, below, and examined at length in Seth Mnookin’s The Panic Virus). Her analysis of purity and goodness (or healthfulness) is particularly compelling. Biss is interested in our “profound alienation from the natural world” and how it shapes risk perception (40). Anything considered unnatural is now coded as bad, whereas the natural is benign. For Biss, this indicates a broader social anxiety that we are polluted by modernity; the products of our own creations – vaccines, medication, food, technology – are poisoning us from the inside out. But purity is a myth and, as she reminds readers, it has been used historically to justify everything from eugenics and sodomy laws to genocide. The purity/pollution binary is a fallacy. “We are all already polluted,” she writes starkly (76).
Biss argues that social anxieties have shifted from fears of bodily pollution by filth to pollution by toxins, the nebulous dangers that animate opposition to vaccines. For a vocal minority, vaccines embody the proliferation of modern toxins and are a metaphor for the excesses of contemporary life (110). They are also fundamentally inseparable from the forces of capitalism through big pharma. Such arguments garner appeal because of what Biss calls “preindustrial nostalgia,” a concept that warrants further unpacking (115). Practices and products seen as traditional, natural, and seemingly untainted by big industry are, it follows, deemed good. They are safe and authentic – reflecting the way things should be – triggering nostalgia for an imagined past untainted by vaccines and their toxic needles, yet curiously unmarked by outbreaks of preventable disease.
On Immunity’s essays are united by the recurring theme of intimacy. The intimacy of parenthood, risk, and biomedical encounters; of kinship, care, and opting in (or out) of vaccinations; of fears and nightmares, however “irrational” or scientifically unsound; and of the ‘I’ versus the ‘we’ of public health. What emerges in the spaces in between knowledge and action, history and hope? For Biss, the answer is a gamble.
Similarly, Jordynn Jack’s Autism and Gender: From Refrigerator Mothers to Computer Geeks uses gaps in current knowledge about autism as a starting point to examine how gendered characters are and have been used historically to shape understandings of and experiences with autism. Here, autism becomes the ethnographic object to which persistent tropes and archetypes stick and gain meaning. The metaphors of autism are well known: breaking down the walls, penetrating the fortress, rescuing the child trapped inside. Jack is particularly interested in analyzing the role of stock characters that, as she explains, make autism narratives translatable, packaged, and socially resonant. She gives a targeted and historically rich analysis of how different characters inform and shape autism discourse, offering a fruitful and contribution to understandings of gender and autism spectrum disorders.
Jack devotes a separate chapter to each primary character: the refrigerator mothers of mid-twentieth century maternal deprivation narratives; anti-vaccination Mother Warriors of the 2000s, popularized by Jenny McCarthy; the computer geeks of today’s Silicon Valley and big tech; distant and supposedly divorce-prone autism dads; and neurodiverse self-advocates. She traces these characters’ roots from the 1940s until the present, arguing that they help shape understandings of autism itself, as well as possibilities for intervention, care work, success stories, and authority claims. One of her central arguments is that efforts to understand autism often – if unwittingly – draw conclusions based on an uncritical acceptance of these characters. As she writes, “…where knowledge or authority is lacking, gendered characters often fill in” (6).
Jack’s examination of the legacy of Bruno Bettelheim and the so-called refrigerator mothers of the post-World War II area is a fascinating addition to other works on the history of autism (see Silberman’s Neurotribes). Bettelheim’s theory was closely informed by psychoanalysis and centered on mothers’ roles in child development. He argued that the mothers of children with autism shared certain basic characteristics: they were anxious and unstable, had a history of emotional problems predating their children, and were unhappy in their marriages (36). These misleading claims supported existing views in psychiatry that parents of children with autism were cold and distant.
In the post-War climate marked by psychoanalysis plus general anxieties about women’s roles in the home, the theory of maternal deprivation caught on. As Jack explains: “Once mother blaming is imposed as a framework, it can recolor all sorts of perceptions and events as potential causes of autism” (47). Jack cites the twentieth century shift from conceptualizing motherhood as the product of innate knowledge to a formal, scientific approach governed by experts. Paradoxically, the increasing public attention to motherhood diminished maternal authority itself, which shifted from the domain of women to the world of research and, in the case of autism, psychiatry.
Bettelheim was later found to have fabricated his credentials and the research findings, and thus a generation of people with autism and their families suffered irreparable harm with no justification. However, Jack cautions readers not to use him as a scapegoat. His ideas only caught on at all because the archetype of the bad, unloving, distant, emotionally fragile mother loomed large at that cultural moment. They resonated, and thus it became codified in the history of autism.
Jack contrasts the refrigerator mother character with twenty-first century “Mother Warriors,” using Jenny McCarthy’s anti-vaccination campaigns as her primary illustration. Emboldened by moving stories, unprecedented access to digital information, and social networking platforms, these mothers believe that autism is a product largely of environmental triggers and toxins, which might include vaccines, gluten, mercury, and processed foods. The women are united by a shared politics of suspicion, coupled with the insistence that they have the authority as mothers to interpret scientific evidence. These are the relatively privileged populations discussed by Biss – the anti-vaccination pockets that tend to appear on the nightly news with each measles outbreak or whooping cough scare. Within this group, surveillance of one’s child combines moral and medical judgments with a distinctly libertarian ethos, and is a uniquely maternal responsibility. The emotionally charged Warrior Mother performs motherhood through her vigilance. As we have seen through the persistence of the anti-vaccine movement, this character has proven perhaps surprisingly resilient.
Jack contrasts these maternal figures with what she argues are the dominant stock characters for men in the autism world: the computer geek; paternalistic physician; and emotionally distant father who wants to “fix” his child. As a whole, these portraits suggest a persistent separation between affect and reason, or care and science, in our understandings of gender and autism. This impacts not only the parents and professionals working within the autism field, but undoubtedly the increasing numbers of people with autism diagnoses. While autism is closely associated with young white males, CDC figures show that both gender and race are key aspects of who receives a diagnosis and of what type. While this topic is outside of the scope of Jack’s book, she leaves it open as a promising area for future scholars.
While Jack and Biss’ writings hinge on textual analyses and the social and historical shaping of disability, Lennard Davis’ The End of Normal: Identity in a Biocultural Era seeks explicitly to bring bodies to the center to the center of the conversation. As he writes: “Bodies can be the sum of their biology; the signifying systems in the culture; the historical, social, and political surround; the scientific defining points; the symptom pool; the technological add-ons all combined and yet differentiated” (7). That is, bodies are fundamentally bicultural. From this starting point, he examines how historical notions of the “normal” bodies have given way to a broader umbrella of diversity frameworks. While largely positive about this shift, Davis is concerned that disability continues to fall outside of the scope of diverse bodies. What if diversity’s appeal and universalism depend in part on the exclusion of the truly abject and marginalized? As he argues, we are all the diverse and equal because we are “not that kind of different” (14).
The crux of the matter, for Davis, is that disability is still perceived as a medical designation and diversity omits medicalized bodies. Diversity, he argues, does not apply to the disabled, ill, or dying. Those are of a different conceptual ilk, namely the pathological. As he writes: “Disabled bodies are, in the current imaginary, constructed as fixed identities. Outside of the hothouse of disability studies and science studies, impairments are commonly seen as abnormal, medically determined, and certainly not socially constructed” (7). Here, the old distinctions of normal versus pathological continue to reign. As a de-historicized bodily condition perceived of as needing a cure, disability cannot be welcomed by a diversity paradigm.
Davis also offers useful a critique of diagnostic certainty, add a more nuanced disability studies perspective to the texts by Biss and Jack. He has long been interested in the dynamic, shifting manifestations of disability identity, and in The End of Normal he turns this lens toward the ontological status of diagnosis and diagnostic certainty. As he writes: “What I am wondering about is the aura of faith that accompanies the process of diagnosis” (82). Tellingly, both Davis and Jack include lengthy discussions of the role of the Diagnostic and Statistical Manual (DSM) in shaping contemporary understandings of disability categories.
Instead of autism spectrum disorder, Davis uses obsessive-compulsive disorder (OCD) as his case study. He argues that diagnosis constitutes a particular form of difference as a thing – an object – and is also loaded with symbolic value. As he writes: “Having created this category that makes ‘sense’ of random or seemingly linked behaviors, we can then assign people and their behaviors to those categories” (83-4). The DSM provides the authority to categorize diagnostically, grouping people with seemingly aberrant behaviors or symptoms under particular – and changing – umbrellas. For Davis, the contingency of diagnosis is illustrated by the fact that the DSM is revised with each new edition. One cannot help but wonder what he would have to say about the recent removal of Asperger’s Syndrome from the DSM.
Davis concludes The End of Normal with a Biocultures Manifesto, co-written with David Morris, followed by asserting that biocultural knowledge is necessary for theorizing and truly making sense of contemporary experiences of race, gender, disability, bodies, and identity (134). He calls on scholars to reframe culture and history in terms of their relationship to biology, and vice versa. We are to probe the boundaries of humanism and science, forming a robust and multi-faceted intellectual movement that spans medical anthropology, public health, science and technology studies, bioethics, disability studies, the medical humanities, and beyond. The language of disability today includes a more diverse and diagnostically delineated population than ever before. We need robust theories and methods to approach these questions of bodies, minds, and moments, following Rapp and Ginsburg’s call to acknowledge disability as a universal facet of the human experience. While such goals might sound lofty, one cannot help but wonder whether emerging works on disability themes, including the three texts featured here, are beginning to do just that.
Elizabeth Lewis is a doctoral candidate in anthropology at the University of Texas at Austin. Her current work examines undiagnosed disabilities in the contemporary U.S., with a focus on family experiences with undiagnosed children. She is engaged in multiple applied and scholarly projects on a variety of disability themes. More information about Elizabeth’s work, writings, and background is available on her blog, Disability Fieldnotes. Find her on Twitter athttps://twitter.com/lizlewisanthro.
This month’s web roundup comes through a bit late – paradoxically- due to technical difficulties (my computer died!). Although I will be able to recover most of my files, the past days were a reminder of just how much we depend on technology to go about our lives, including saving our work, our thoughts and ideas… which leads me directly to the topic I had chosen for this post – Artificial intelligence and the human mind.
One of the most fundamental tenets held by social scientists studying the mind is that human cognition is grounded in biological, social, and cultural processes. It is the intertwining of these necessary levels that explains the complexity, design, and richness of the human mind. Right? Earlier this month, I attended a fascinating talk about human utopias, science fiction, and virtual reality, where the speakers asked whether we can ever free consciousness from our bodies. Drawing from ideas about virtual reality and the outstanding improvement in artificial intelligence (AI) technology, the audience was left thinking: Is all consciousness necessarily biological and social? I learned that, in science fiction, there are generally two ways in which the mind is freed from the body. One way is jacking-in, meaning that you plug yourself to virtual reality. Notice that when you do that, you are still in your body, the thinking is still happening in your brain. Another way is the “uploading” – this is about having your brain copied onto a computer. In this case, you live on in the cloud and your body is completely discarded. While we don’t have the technology to jack-in, let alone to “upload” anyone, one can imagine this being possible at some point in the future. For me, the mere possibility is indeed an invitation to think through our very definition of mind, and consciousness. Could an uploaded mind still be considered a mind?
The answer to this question depends on how we define mind and consciousness. The field of cognitive science emphasizes cognition and more specifically, how information is represented, processed, and transformed to study mind and consciousness. The brain-as-a-computer metaphor is so deeply ingrained in this approach that it is sometimes taken quite literally. This eases the difficulties of transposing the concept of mind to the field of artificial intelligence. From this perspective, we can perfectly say that AI is looking more and more like the human mind. Earlier this month, websites were filled with the news of a computer program designed by Google’s DeepMind project and how it beat one of the best Go-players in the world (More coverage can be found here and here). The news triggered a discussion about the exponential improvements we are seeing in the AI’s capacity to think and learn in ways approaching those of people. Will AI machines ever outsmart us? Some people argue that the question is not whether this will happen or not, but when this will happen. For now, it is clear that when it comes to information processing (especially big amounts of information) AI has the lead over human beings.
Now, the answer to the question about AI being a form of mind is a straightforward “NO” if we assume that mind and consciousness comprise more than information processing. The obvious argument is that consciousness is about being aware of the internal and external world, about the capacity to feel and experience the world in a subjective manner. But the thing here is that asking if AI is a type of mind or whether it can be considered a type of consciousness picks up on a number of issues we have not yet resolved, starting with a clear understanding of what consciousness (or even a simple thought!) really is and how it comes to be. The argument against AI being a form of mind maintains that AI will never be like our intelligence. For one thing, “a strict symbol-processing machine can never be a symbol-understanding machine”. Further, while machines are digital simulations of physiological processes, we should not forget that simulation does not equal duplication (just a side thought here – does “non-human-like” mind necessarily mean “not a mind”?). People on the other side of the argument assert that AI is advancing at an astonishing speed, and point to robots that can express and react to emotions, interact with human beings, and even exhibit what could be considered a very basic type of self-awareness and a rudimentary sense of humor.
Regardless of what each one of us think about the question of AI and its capacity to resemble human intelligence, the truth is that AI is bound to have an ever increasing influence in how we live our lives. Researchers in the area of AI aim to have it assist humans in advanced fields such as healthcare, education, or transportation. While this opens up a myriad of exciting opportunities, the involvement of AI technologies in areas previously restricted to conscious human decision making has profound ethical implications that need to be addressed. For example, AI can be used to help influence the prioritization and allocation of core hospital tasks, indeed there is an ongoing project that does just that. AI could also be used to shape the “interpersonal” level, as shown in this piece about a child with autism who founds in Siri a companion and an ally that can help him deal with his relational challenges. Can we imagine AI powering therapies for people with social or relational disabilities? Without going that far, can we imagine intelligent robots accompanying or aiding therapeutic processes outside the clinician’s office? What would the implications of this be? Another hot spot is transportation, where the use of AI is expanding rapidly. It is certainly compelling to imagine self-driving cars and the potential benefits in terms of road safety. Intelligent cars can avoid all too frequent human errors, saving lives. Yet, self-driving cars will eventually be involved in traffic accidents. Whom should a car protect given a dangerous situation? A pedestrian? A passenger? A child or an adult? Clearly, we humans still struggle with these decisions, you just ask researchers working with the trolley problem. Yet, introducing AI means that some sort of answer needs to be built into the algorithm that “makes” the decision on the spot.
The quest for AI is a reminder of how far we have come and yet how much more we need to know. Indeed, the relevance of the question of how to come to grips with the messy real world goes beyond the field of AI. So maybe this is not a question about who is smarter, humans or AI machines. When thinking about the social world, it is undeniable that AI can process and learn from amounts of data that are unthinkable for human beings, but the problems faced in society involve a mix of data, circumstances, and human behavior shaped by meaning making processes. The development of more advanced forms of AI offers possibilities that we can only start to imagine. It also confronts us with core questions about our own minds, how the brain works, what we take consciousness to be, and how we understand our minds to shape and be shaped by the social world. It seems to me that the future is filled with opportunities to expand our horizons with the help of AI.
A little humor about robots from around the web – Enjoy!
Since the late 1980s growing numbers of mental health professionals and media commentators in Britain and the USA have been concerned with a behaviour labelled as ‘self-harm’, ‘deliberate self-harm’ or ‘self-injury’. It is often seen as a secret or hidden practice, and it is almost always ‘on the rise’, especially among adolescent females. Most commonly it refers to self-cutting or self-burning, performed in order to relieve intolerable emotional tension or numbness.
In contrast, during the 1960s and ‘70s, the term ‘self-harm’ generally referred to somebody ‘crying for help’ by taking an overdose (self-poisoning). Now, it predominantly means regulating emotional tension by self-cutting or -burning. The ratio of cutting to overdosing in hospital statistics hasn’t changed very much, remaining around eight or nine to one in favour of self-poisoners. Why, in such a short space of time, have popular self-harm stereotypes shifted so dramatically?
The first thing to acknowledge in the face of this shift is that self-harm hasn’t always meant what we think it means. In the very recent past in Britain, ‘self-harm’ did not conjure up images of blood and cutting, but medication and overdosing. The ways in which we understand self-harm are both relatively recent and incredibly narrow.
This goes against some ideas of self-harm as timeless and almost mystical, which link it to religious self-flagellation, bloodletting, and even Tibetan tantric practices and the Passion of Christ – all of which focus on, or involve bleeding.
The term ‘deliberate self-harm’ was proposed in 1975 (as a new label) at a hospital in Bristol. It was used to describe a group of patients where 92 per cent had poisoned themselves (mostly with prescription or over the counter medication). It remains the case that hospital statistics for self-harm typically contain between 80 per cent and 95 per cent self-poisoners, and only a small minority of self-cutters.
This situation dates back to the 1950s. Groups of psychiatrists became concerned at a number of people who presented at casualty departments having harmed themselves in such a way that death was unlikely. This was usually achieved by taking an overdose of medication (typically aspirin, or strong sedatives called barbiturates). This act was initially called ‘attempted suicide’ by psychiatrist Erwin Stengel, even though he thought that death was not what was being attempted. Later, other psychiatrists tried to improve on the term, calling it ‘self-poisoning’, ‘pseudocide’ or ‘propetia’ (from the Greek for ‘rashness’). These doctors agreed that the overdoses were not intended to cause death; instead they were a desperate, maladjusted attempt at language, a ‘cry for help’ to their friends and family that they were in distress. Taking an overdose became recognised as an attempt to communicate with a social circle or ‘significant other’.
Part of the change in stereotypes can be linked to changes in how hospitals assess people presenting at A&E [or, the ER] having self-harmed. In the early 1980s the British government reviewed guidance on hospital self-harm assessment (mostly self-poisoning), recommending that it can be delegated out of the hands of psychiatrists. Thus self-poisoning studies by research psychiatrists declined in number and receded in prominence. (This is not the same as saying that the number of people self-poisoning has decreased.) Many of these psychiatrists collaborated with social workers, who did much of the work trying to reconstruct the social context for these overdoses. They did this by visiting patients at home after the event, interviewing family members and spouses, and bringing this information back to psychiatrists, who could then present the overdose as a result of these relationships. Once psychiatrists reduced the amount of patient assessment at A&E, these collaborations dwindled.
Self-cutting studies were largely unaffected by these changes as they tended to come from analysis of small groups either involved in individual counselling, inside psychiatric hospitals, or, more recently from community studies. Around the same time, self-cutting was given a boost in visibility with its inclusion (as a symptom of Borderline Personality Disorder) in the American Diagnostic and Statistical Manual of Mental Disorders, 3rd Edition (DSM-III) (1980).
However, this simply shifts the mystery. Why have stereotypes come to emphasise self-cutting, which almost eclipses ideas of self-poisoning? This is despite the fact that studies coming out of hospitals still include self-poisoners in with self-cutters. This is a change in stereotypes, not statistics. Much clinical work outside hospitals dealing with self-injury now focuses on practices involving the surface of the skin, to the exclusion of overdosing. The new edition of the influential American manual, DSM-5, includes a category of non-suicidal self-injury (NSSI) that specifically excludes actions not performed on the surface of the skin.
One explanation for this shift in stereotypes lies in broad political shifts that have occurred between the 1960s and the present. Particularly relevant here is what political theorists call ‘the collapse of consensus politics’ in Britain. This consensus prevailed from the end of the Second World War until the late 1970s. It describes a political environment where the main political parties agreed on a number of things: the principle of state ownership of certain industries (such as energy and telecoms) and the state’s owning and running healthcare (the NHS) and public transport (British Rail).
This consensus was broken by the ascent of ‘neoliberal’ ideas – which focus on the individual and competition, distrust the state, and prefer the free market. These ideas are perhaps best summed up by Margaret Thatcher’s immortal words in a 1987 interview with Woman’s Own, that there was ‘no such thing as society’, but instead families and individuals.
One particular kind of self-harm (overdosing as cry for help) is understood as an action communicating with others: a specific person, a group of friends, or even society in general. This stereotype of a ‘cry for help’ begins to resonate a little less with the prevailing climate, fitting in less well with a focus on individuals. It also falls due to reduced psychiatric attention, and reduced social work input – which is crucial to understanding behaviour in its social context.
At the same time another self-harm stereotype (self-cutting as emotional control) is based upon the idea of an individual, self-regulating. This comes more to the fore in this environment. This new understanding doesn’t need social workers, but relies upon assessments of the patient’s emotional state at the time of self-harm, something investigated intensively by counsellors.
This is also bound up with the relative fall of ‘social psychiatry’ which understands people much more in their social context. It is pushed aside by psychiatric ideas that understand people in terms of their individual biology and brain chemistry, rather than by their family relationships and social experiences.
It might well be asked how the privatisation of the British rail network (for example) could have any impact on whether pills or cutting are seen as self-harm? This question is valid, and the answer is partial and a little speculative. As we are talking about broad stereotypes, rather than statistical evidence, we need to zoom out to take a much broader view. (This doesn’t mean we forget practical shifts like the decline in social work collaboration or psychiatric assessment at A&E.)
The concepts that we use to understand our own and others’ behaviour form small parts of what we consider ‘common sense’. Common sense about racial difference in human beings (for example) is very different in 1900 than it is in 1950, and again from 1950 to 2000. Common sense shifts over time – including what is generally meant by the term ‘self-harm’. It is related to broad social and political shifts. In the same way that presentation of classic hysteria (with swooning, paralysis and ‘the vapours’) belongs to a certain social and cultural context, self-harm presentations are bound up with history, culture and politics. In a post-1980s environment that focuses upon the individual, individualised explanations predominate. In the 1960s where there is a more communal, collective approach, it makes more sense, to more people, to understand actions in terms of a social context.
Psychological labels and concepts that seem to have an independent existence (like ideas of self-harm) are thus intimately related to these larger shifts.
Chris Millard is a Wellcome Trust Medical Humanities Research Fellow at the Centre for the History of the Emotions at Queen Mary, University of London. He has worked on the history of self-harm (self-cutting and overdosing) the history of social work, and ‘parity of esteem’ between physical and mental health. He is currently writing about Munchausen syndromes: illness deception (Munchausen), child abuse (Munchausen by Proxy) and online health behaviours (Munchausen by Internet). He is the author of A History of Self-Harm in Britain: A Genealogy of Cutting and Overdosing (Palgrave, 2015).
In addition to our regular roundup of journal articles, these two special issues were published this month:
- In Medical Anthropology Quarterly, “Toward an Anthropology of Insurance and Health Reform.” The issue includes a policy statement: The Council on Anthropology and Reproduction (CAR) Opposes Legislation that Creates Barriers to Safe Abortion Care.
- In Health, Risk & Society, “Digitised Health, Medicine and Risk“
Toward an Anthropology of Insurance and Health Reform: An Introduction to the Special Issue
Amy Dao & Jessica Mulligan
This article introduces a special issue of Medical Anthropology Quarterly on health insurance and health reform. We begin by reviewing anthropological contributions to the study of financial models for health care and then discuss the unique contributions offered by the articles of this collection. The contributors demonstrate how insurance accentuates—but does not resolve tensions between granting universal access to care and rationing limited resources, between social solidarity and individual responsibility, and between private markets and public goods. Insurance does not have a single meaning, logic, or effect but needs to be viewed in practice, in context, and from multiple vantage points. As the field of insurance studies in the social sciences grows and as health reforms across the globe continue to use insurance to restructure the organization of health care, it is incumbent on medical anthropologists to undertake a renewed and concerted study of health insurance and health systems.
A major goal of The Patient Protection and Affordable Care Act is to broaden health care access through the extension of insurance coverage. However, little attention has been given to growing disparities in access to health care among the insured, as trends to reduce benefits and increase cost sharing (deductibles, co-pays) reduce affordability and access. Through a political economic perspective that critiques moral hazard, this article draws from ethnographic research with the United Steelworkers (USW) at a steel mill and the Retail, Wholesale and Department Store Union (RWDSU) at a food-processing plant in urban Central Appalachia. In so doing, this article describes difficulties of health care affordability on the eve of reform for differentially insured working families with employer-sponsored health insurance. Additionally, this article argues that the proposed Cadillac tax on high-cost health plans will increase problems with appropriate health care access and medical financial burden for many families.
Insurance Accounts: The Cultural Logics of Health Care Financing
The financial exuberance that eventually culminated in the recent world economic crisis also ushered in dramatic shifts in how health care is financed, administered, and imagined. Drawing on research conducted in the mid-2000s at a health insurance company in Puerto Rico, this article shows how health care has been financialized in many ways that include: (1) privatizing public services; (2) engineering new insurance products like high deductible plans and health savings accounts; (3) applying financial techniques to premium payments to yield maximum profitability; (4) a managerial focus on shareholder value; and (5) prioritizing mergers and financial speculation. The article argues that financial techniques obfuscate how much health care costs, foster widespread gaming of reimbursement systems that drives up prices, and “unpool” risk by devolving financial and moral responsibility for health care onto individual consumers.
Neoliberal Justice and the Transformation of the Moral: The Privatization of the Right to Health Care in Colombia
César Ernesto Abadía-Barrero
Neoliberal reforms have transformed the legislative scope and everyday dynamics around the right to health care from welfare state social contracts to insurance markets administered by transnational financial capital. This article presents experiences of health care–seeking treatment, judicial rulings about the right to health care, and market-based health care legislation in Colombia. When insurance companies deny services, citizens petition the judiciary to issue a writ affirming their right to health care. The judiciary evaluates the finances of all relevant parties to rule whether a service should be provided and who should be responsible for the costs. A 2011 law claimed that citizens who demand, physicians who prescribe, and judges who grant uncovered services use the system’s limited economic resources and undermine the state’s capacity to expand coverage to the poor. This article shows how the consolidation of neoliberal ideology in health care requires the transformation of moral values around life.
Chronic conditions associated with lifestyle and modifiable behaviors are the leading causes of morbidity and mortality in the United States. The implementation of the Affordable Care Act offers an historic opportunity to consider novel approaches to addressing the nation’s public health concerns. We adopt an anticipatory anthropological perspective to consider lifestyle behavior change as common ground shared by practitioners of both biomedicine and common forms of complementary and alternative medicine (CAM). At issue is whether CAM practitioners might play a more proactive and publicly endorsed role in delivering preventive and promotive health services to address these needs. Recognizing that this is a contentious issue, we consider two constructive roles for engaged medical anthropologists: (1) as culture brokers helping to facilitate interprofessional communities of preventive and promotive health practice and (2) in collaboration with health service researchers developing patient-near evaluations of preventive and promotive health services on patient well-being and behavior change.
Gendering the Burden of Care: Health Reform and the Paradox of Community Participation in Western Belize
Beth A. Uzwiak & Siobhan Curran
Belizean health policy supports a primary health care (PHC) strategy of universal access, community participation, and multisectoral collaboration. The principals of PHC were a key part of Belize’s emergent national identity and built on existing community-based health strategies. Ethnographic research in western Belize, however, reveals that ongoing health reform is removing providers from participatory arenas. In this article, we foreground a particular moment in Belizean health history—the rise and demise of multisectoral collaboration—to question what can constitute meaningful community participation in the midst of health reform. Many allied health providers continue to believe in the potential of PHC to alleviate the structural causations of poor health and to invest in PHC despite a lack of state support. This means that providers, the majority women, are palliating the consequences of neoliberal reform; it also means that they provide spaces of contestation to the consumer “logic” of this reform.
The following article identifies new areas for engaged medical anthropological research on health insurance in low- and middle-income countries (LMICs). Based on a review of the literature and pilot research, we identify gaps in how insurance is understood, administered, used, and abused. We provide a historical overview of insurance as an emerging global health panacea and then offer brief assessments of three high-profile attempts to provide universal health coverage. Considerable research on health insurance in LMICs has been quantitative and focused on a limited set of outcomes. To advance the field, we identify eight productive areas for future ethnographic research that will add depth to our understanding of the social life and impact of health insurance in LMICs. Anthropologists can provide unique insights into shifting health and financial practices that accompany insurance coverage, while documenting insurance programs as they evolve and respond to contingencies.
Society for Medical Anthropology Council on Anthropology and Reproduction (CAR) Policy Statement: The Council on Anthropology and Reproduction (CAR) Opposes Legislation that Creates Barriers to Safe Abortion Care (open access)
This special issue on Digitised Health, Medicine and Risk, edited by Deborah Lupton, has three sections: 1) Risk in the design and development of apps; 2) Individual users and the construction of risk; 3) Citizens’ understanding of the impact of digital technology on risk.
The gamification of risk: how health apps foster self-confidence and why this is not enough
Antonio Maturo & Francesca Setiffi
Weight loss apps enable users to quantify many aspects of food consumption, beginning with calories intake. Users of weight loss apps can also participate in online forums that act as digital self-help groups. These apps also include several features related to game playing or gamification such as avatars, points and virtual awards. Gamification has the aim of strengthening motivation to carry out a (boring) task. We downloaded the 20 most popular free weight loss apps in Google Play. We analysed app descriptions provided by developers, comments about the selected apps in online forums and user reviews. We focused on four of these apps, since they had some special functions. We found that users’ risk management was based on a mixed method that combined quantification and gamification, that is, rationality and emotions. Quantification, which includes self-tracking, data analysis and graphic layout, provides the ‘rational’ basis for dietary regimes, while gamification provides the emotional support needed to maintain motivation and continue with the diet. Our analysis provides support for the emotion–risk assemblage theory and the in-between strategy. Our analysis reinforces the importance of emotions in risk management. However, these dieting apps are based on a reductionist approach to obesity and weight loss, as obesity is framed as an individual problem, while weight loss is seen as dependent on individual motivation. Such framing tends to conceal the social determinant of health and the social and political causes of obesity.
Threats and thrills: pregnancy apps, risk and consumption
Gareth M. Thomas & Deborah Lupton
In this article, we draw on the findings of a critical discourse analysis of pregnancy-related mobile software applications designed for smartphones (‘apps’) to examine how such apps configure pregnant embodiment. Drawing on a detailed analysis of all such apps available in June 2015 in the two major global app stores Google Play and Apple App Store, we discuss how such technologies (the ‘threats’ mode of representation) portray the pregnant body as a site of risk requiring careful self-surveillance using apps to reduce potential harm to women and particularly their foetuses. We show that the second dominant mode of representation (‘thrills’) constructs the pregnant body and self-tracking in more playful terms. App developers use ludification strategies and encourage the social sharing of pregnancy-related details as part of emphasising the enjoyable aspects of pregnancy. We found that both types of pregnancy-related apps endorse expectations around pregnancy behaviour that reproduce heteronormative and gendered ideals around sexuality, parenthood and consumption. These apps are sociocultural artefacts enacting pregnant bodies as sites of both risk and pleasure. In both cases, users of the apps are encouraged to view pregnancy as an embodied mode of close monitoring and surveillance, display and performance.
Mobile health apps have emerged as a technological fix promising to improve asthma management. In the United States, treatment non-adherence has become the most pressing asthma risk; as such, emphasis has increasingly focused on getting asthmatics to take medications as prescribed. In this article I examine how mobile Asthma (mAsthma) apps operate as part of digital risk society, where mobile apps create new modes of risk identification and management; promise to control messy and undisciplined subjects and care practices; use algorithms to generate new risk calculations; and make risk livelier through digital assemblages. Drawing on ethnographic fieldwork, content analysis of mAsthma app design, as well as interviews with app developers, in this article I argue that these digital care technologies strip disease and risk of biographical, ecological and affective detail in ways that largely reinforce biomedical paradigms. Yet some apps offer new insight into the place-based dynamics of environmental health, a view made possible with digitised personal tracking, visual analytics and crowdsourced data. mAsthma apps are caught in the tension between the biopolitics of existing chronic care infrastructure, which reinforce a strict neoliberalised patient responsibility, and the promise of collective, place-based approaches to global environmental health problems.
In this article, we critically interrogate the discourses used during the development of eCoaches. We draw on data from a four-phase qualitative study about the ethical, legal and social aspects of using digital technologies to encourage lifestyle changes that was conducted in the Netherlands between March 2014 and May 2015. The four phases of this study included interviews, document analysis, participant observation, interventionist workshops on legal issues and a forward-looking techno-ethical scenarios workshop. We use data from the first three phases to identify how both health-related and technology-related risks for individuals and society were constructed. There were multiple, concurrent references to risk in the programme and project documents, as well as in the various discussions we observed among designers. We discuss three major constructions of risk found in these discourses: risks to the health system, risks of developing an ineffective eCoach and new risks to the individual user. We argue that these three constructions feed particular norms and values into the design of the resultant eCoaches, whereby notions such as effectiveness, social solidarity, responsibility for health and individual autonomy (and thus, our understanding of what constitutes ‘risk’) are redefined. Understandings of risk may shift once users begin engaging with these eCoaches in practice. Future research should therefore also examine (discursive) constructions and understandings of digital risk from the perspective of the users of such technologies.
In 2013, the ‘right to baby formula’ movement supported by educated, middle-class Chinese families in Hong Kong was launched online challenging the dominant message that ‘breast is best’. In this article, I focus on links between mediatisation, globalisation of formula milk and motherhood in post-colonial Hong Kong. Although previous research has examined ideologies of motherhood and mothers’ infant feeding decisions, little research has focused on the impact of digital media within post-colonial societies undergoing rapid social change. Drawing on data from a study of mothers living in Hong Kong that I conducted during 2010–2011 and 2013–2014, I show how digital media contribute to changes in individuals’ experiences with breastfeeding, perceptions of risk and health, as well as social relations, norms, values and identities in contemporary Hong Kong. I explore how and with what consequences the family, especially as it relates to motherhood and childhood, and the practices of infant feeding are intertwined with digital media and the body politic in neoliberal, post-colonial Hong Kong. I argue that although digital media have globalised the biomedical discourse that ‘breast is best’, mothers in Hong Kong have, through digital storytelling and virtual interaction, generated alternative interpretations of science, health and their embodied illness experience that serve to counterbalance the cultural contradictions of motherhood. I show that through social networking, parents have not only gained sufficient political power to secure formula milk, they are also simultaneously subsumed to consumer desire created by the marketing of international pharmaceutical companies.
‘Holy shit, didn’t realise my drinking was high risk’: an analysis of the way risk is enacted through an online alcohol and drug screening intervention
Michael Savic, S. Fiona Barker, Barbara Hunter & Dan I. Lubman
Commentators view online screening and automated feedback interventions as low-cost ways of addressing alcohol and other drug-related harms. These interventions place people into categories of risk based upon scores from standardised screens and provide automated feedback about a person’s level of risk of developing alcohol and other drug ‘problems’. In this article, we examine how one particular alcohol and other drug online screening and feedback intervention enacts risky alcohol and other drug use and users, and explore how these enactments compare to alcohol and other drug users’ own accounts of risk. In order to do this, we undertook a qualitative analysis of intervention content and intervention recipients’ responses (n = 489) to an open-ended question about their experience of the online screening and feedback intervention. Our analysis highlights how the online screening and feedback intervention draws on prevention science to cultivate a sense of expertness and objectivity. Intervention recipients’ accounts of risk were either overshadowed by the ‘expert’ risk account provided by the intervention, ‘validated’ by the intervention or were not accurately reflected by the intervention. In the latter case, intervention recipient comments draw attention to the way in which the intervention enacts alcohol and other drug use as inherently risky without accounting for the context and purpose of use. While the online screening and feedback intervention assumes that people are capable of self-monitoring and managing their alcohol and other drug use and risk, recommendations for help provided enact intervention recipients as fragile and in need of professional help. We suggest that there is a need for the development of interventions that are better equipped to take account of the complexity of alcohol and other drug use and risk experiences and subjectivities.
Stem cell miracles or Russian roulette?: patients’ use of digital media to campaign for access to clinically unproven treatments
Alan Petersen, Casimir MacGregor & Megan Munsie
In this article, we examine how patients use digital media to gain access to treatments that have yet to be clinically proven as safe and effective. Making reference to the case of an Australian patient who achieved notoriety following a 60 Minutes television programme in 2014 following her travel to Russia to undertake stem cell treatment, in the article we discuss the dynamic interplay of discourses of hope, risk and trust in this digitally mediated context. As we argue, Web 2.0 digital media provides patient activists with a powerful means to generate their own framings of the significance of treatments especially when linked with more traditional media such as television. Our findings underline how citizens may use digital media to create ‘communities of hope’ that sustain optimistic portrayals of treatments that may be resistant to official, regulatory discourses of risk-benefit and trust. Patients’ growing use of digital media, we conclude, necessitates a reconceptualisation of ‘health’ and ‘risk’ and approaches to regulating treatments that are unproven and hence deemed ‘risky’.
Biosensing: how citizens’ views illuminate emerging health and social risks
Maggie Mort, Celia Mary Roberts, Mette Kragh Furbo, Joann Wilkinson & Adrian Mackenzie
This article explores material from a citizen’s inquiry into the social and ethical implications of health biosensors. In ‘Our Bodies, Our Data’ a space was afforded for members of the public to examine two forms of health biosensing, and for the authors to research what happens when such examination shifts from the domain of experts to that of citizens. Drawing on data from this inquiry, which form part of a wider research project, ‘Living Data: making sense of health biosensors’, we open up conceptual and methodological questions about how to study innovative health technologies and contribute to debates about the direction of health biosensing by bringing forward the views of a group rarely heard in this domain: the public. The panel of 15 participants was shown examples, handled devices and heard evidence about the development of home ovulation monitoring and direct-to-consumer genetic testing. Citizens identified key areas of concern around the development, design and marketing of these devices, implicating technology companies, public bodies and civil society organisations. The panel articulated serious concerns relating to ethics, trust, accountability, quality and governance of health biosensors that operate ‘outside the clinic’. Their deliberations reflect concern for what kind of society is being made when genetic testing and home reproductive technologies are promoted and sold directly to the public. The panel process allowed us to re-imagine biosensors, wresting their narratives from the individualising discourses of self-optimisation and responsibilisation which have dominated their introduction in Euro-US markets.
Here is the second half of our March roundup of journal articles. There are also two Special Issues out this month that may be of interest, including the current Medical Anthropology Quarterly, and their contents are posted here.
In this article, I discuss two “crimes of compassion”—one a mercy killing and the other what I refer to as a “mercy resurrection”—as key illustrations of the changing landscape of necropolitical governmentality in Russia some 20 years after the collapse of the Soviet Union. Such practices present unanticipated challenges to the state control of death, producing irregular yet ultimately normative narratives of what counts as pathological, as life and death, and as the meaning of suffering, love, and compassion. I argue that these cases ultimately present two sides of the same coin, evincing a politics of life that, intentionally or not, defies the power of the state over death and its monopoly position as the purveyor of death and immortality. They also suggest alternative practices of caregiving to the dead and dying. In doing all this, they enter a legally ambiguous zone between violence and compassion, martyrdom and savagery, madness and mercy.
In this article, I explore surrogates’ rich, diverse, and collective negotiations of relatedness and relationships on the largest U.S. surrogacy support website. Surrogates reconfigure existing kinship understandings and maintain that intent and love are firmer bases of parenthood than biogenetic connection. Increasing use of donor gametes contributes to the emphasis on desire to be parents. In gestational surrogacy, genetic relatedness between the child and the intended parents strengthens claim to parenthood but lack thereof does not call parenthood into question. Traditional surrogates’ biogenetic connection to the child they carry is never considered to be grounds for claims to motherhood. Surrogates and intended parents “do kinship” and consider the actions of kinship more consequential that its biological facts. In their accounts, desire for children is “natural” and the choice to raise them is understood as morally positive. Genetic facts, however, are understood as morally neutral. Surrogates and intended parents contend that surrogate babies belong to the parents who want them. Surrogates’ emphasis on chosen solidarity works to diminish the importance of genetic relatedness and helps them uphold the traditional boundaries of their own nuclear family and that of the intended parents.
People in southern Ghana provide care by attending to and synchronizing their and others’ life courses. Women, in particular, synchronize their life courses with the developmental and aging pathways of others. Since the 1970s, younger women in southern Ghana have migrated to urban or rural areas to earn money, leaving their children in the care of their mothers, whom they support with their remittances. As migrant women grow older, they return to their hometowns to provide elder and child care. Although female transmigrants also use these temporal strategies of care, the synchronization of life courses proves more difficult to coordinate in transnational contexts. For these reasons, time and timing is as important as space and location to transnational migrants, and migration is transtemporal as well as translocal.
“Zip me up, and cool me down”: Molar narratives and molecular intensities in ‘helicopter’ mental health services
Laura McGrath & Paula Reavey
Experiences of the space–time dimensions of contemporary mental health services are shaped according to what we describe here as a ‘helicopter service’, where professionals drop down into service users’ lives for short, often pre-determined bursts of time. This can create a system where users’ experiences are observed and assessed from a more distanced and circumscribed perspective. This paper considers the implications of these systemic changes, using interviews with current UK service users. To help in the exploration of the complexities faced by service users’, we use Deleuze and Guatarri’s (1987) distinction between molar and molecular forms of organisation. A process oriented thematic analysis discusses: a) Affording narratives of distress: Molarity, monitoring and space in service interactions and b) Narratives in therapy: Compartmentalising the distressed self. Multiple aspects of the relationship between space and distress are explored. An understanding of experiences of distress beyond the boundaries of the molar, which considers its intensive, molecular and transformative nature, may help to open up engagement with the affective and emotional dimensions of mental health.
Unpacking the impact of older adults’ home death on family care-givers’ experiences of home
Christine Milligana, Mary Turnera, Susan Blakeb, Sarah Brearleya, David Seamarkb, Carol Thomasa, Xu Wangc, Sheila Paynea
Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our ‘Unpacking the Home’ study to elicit an in-depth understanding of how facilitating a home death can create an ambiguity of place for family carers, where the issues faced by them in caring for a dying older person at home, and the home death itself, can fundamentally reshape the meaning and sense of home.
Taming the fear of voice: Dilemmas in maintaining a high vaccination rate in the Netherlands
Els Geelen, Hans van Vliet, Pieter de Hoogh, Klasien Horstman
In the context of international public debates on vaccination the National Institute for Public Health and the Environment (RIVM), the Dutch public health body responsible for the National Immunization Programme (NIP), fears that the high vaccination rate of children in the Netherlands obscures the many doubts and criticisms parents may have about vaccination. The question arises as to how the robustness of this vaccination rate and the resilience of the NIP can be assessed. To answer this question, we explore the vaccination practices and relationships between professionals and parents using qualitative methods. Drawing on Hirschman’s concepts of exit, voice and loyalty, we distinguish between two different approaches to vaccination: one which enforces parental loyalty to the vaccination programme, and one which allows for voice. The analysis shows that due to their lack of voice in the main vaccination setting, parents’ considerations are unknown and insight into their loyalty is lacking. We argue that the Dutch vaccination programme is caught between the insecurity of enforced parental loyalty to the NIP and the insecurity of enabling parental voice and negotiating space. We conclude that to increase the resilience of the NIP, experimenting with voice and exit is inevitable.
The myth of the total institution: Written narratives of patients’ views of sanatorium care 1908–1959
Staffan Bengtsson, Pia H. Bülow
Drawing on written narratives by 72 former sanatorium patients, this article explores, from patients’ perspectives, the nature of the relationships between patients and staff in a Swedish sanatorium during the first half of the twentieth century. These narratives are discussed in the context of the total institution. This article suggests that this phenomenon was marked by inconsistencies that can be understood in terms of its situational and contradictory characteristics. Simultaneously, these narratives are in opposition to the assumption of the static and powerless patient adapted only to suit the logic of the institution.
Vaccination against the sexually transmitted Human Papilloma Virus (HPV), a necessary agent for the development of cervical cancer, has triggered much debate. In Austria, HPV policy turned from “lagging behind” in 2008 into “Europe’s frontrunner” by 2013. Drawing on qualitative research, the article shows how the vaccine was transformed and made “good enough” over the course of five years. By means of tinkering and shifting storylines, policy officials and experts disassociated the vaccine from gender, vaccine manufacturers, and youth sexuality. Ultimately, the HPV vaccine functioned to strengthen the national immunization program. To this end, preventing an effective problematization of the extant screening program was essential.
“These things are dangerous”: Understanding induced abortion trajectories in urban Zambia
Ernestina Coast, Susan F. Murray
Unsafe abortion is a significant but preventable cause of global maternal mortality and morbidity. Zambia has among the most liberal abortion laws in sub-Saharan Africa, however this alone does not guarantee access to safe abortion, and 30% of maternal mortality is attributable to unsafe procedures. Too little is known about the pathways women take to reach abortion services in such resource-poor settings, or what informs care-seeking behaviours, barriers and delays. In-depth qualitative interviews were conducted in 2013 with 112 women who accessed abortion-related care in a Lusaka tertiary government hospital at some point in their pathway. The sample included women seeking safe abortion and also those receiving hospital care following unsafe abortion. We identified a typology of three care-seeking trajectories that ended in the use of hospital services: clinical abortion induced in hospital; clinical abortion initiated elsewhere, with post-abortion care in hospital; and non-clinical abortion initiated elsewhere, with post-abortion care in hospital. Framework analyses of 70 transcripts showed that trajectories to a termination of an unwanted pregnancy can be complex and iterative. Individuals may navigate private and public formal healthcare systems and consult unqualified providers, often trying multiple strategies. We found four major influences on which trajectory a woman followed, as well as the complexity and timing of her trajectory: i) the advice of trusted others ii) perceptions of risk iii) delays in care-seeking and receipt of services and iv) economic cost. Even though abortion is legal in Zambia, girls and women still take significant risks to terminate unwanted pregnancies. Levels of awareness about the legality of abortion and its provision remain low even in urban Zambia, especially among adolescents. Unofficial payments required by some providers can be a major barrier to safe care. Timely access to safe abortion services depends on chance rather than informed exercise of entitlement.
Agency, intimacy, and rape jokes: an ethnographic study of young women and sexual risk in Chennai (open access)
In this article, I examine the circulation of jokes about sexual violence among young middle-class women in the South Indian city of Chennai. Drawing on ethnographic research with undergraduate students in this city, I locate the rape joke in an ambivalent discourse of risk that conflates the possibility of sexual assault with the perceived ‘risks’ of women’s sexual autonomy. In this context, I argue that humour about sexual violence functions as a form of lateral agency, facilitating a break from the task of reproducing middle-class respectability.
Basic Research and Knowledge Production Modes: A View from the Harvard Medical School
Andrea Boggio, Andrea Ballabeni, David Hemenway
A robust body of literature analyzes the shift of academic science toward more business-oriented models. This paper presents the findings of an empirical study investigating basic scientists’ attitudes toward publicly funded basic research at the Harvard Medical School and affiliated institutions. The study finds that scientists at the Harvard Medical School construe publicly funded basic research as inquiries that, whether use oriented or not, must be governed by the cognitive and social norms of the traditional mode of knowledge production (mode 1 paradigm). They recognize that academic science is vulnerable to access by external capital but maintain that it remains distinct from research done in the private sector. Overall, the study demonstrates that important segments of academia have preserved a traditional approach to knowledge production, which is yet to be transformed by the entrepreneurial turn.
Voluntary Participation in Forensic DNA Databases: Altruism, Resistance, and Stigma
Helena Machado, Susana Silva
The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile to be included in the Portuguese forensic DNA database. The analysis is undertaken from the perspective of biological citizenship and the simultaneous empowering and disempowering effects of surveillance. The results indicate a pragmatic ethical framework that is linked to the cultural and emotional elements of altruism, resistance, stigma, and social representations of what is beneficial or harmful to the individual and to society. These subjectivities are anchored in commonplace images and metaphors for genetics, DNA, and forensic science that circulate in the messages transmitted by the media which pervade everyday life; hierarchies of trust in science and the justice system; and moral categories associated with the individual self-judgment in relation to crime, surveillance, and social order.
Roberto Esposito’s ‘Affirmative Biopolitics’ and the Gift
Thomas F. Tierney
This article develops the affirmative biopolitics that Roberto Esposito intimates in his trilogy – Communitas, Immunitas and Bíos. The key to this affirmative biopolitics lies in the relationship between the munus, a form of gift that is the root of communitas and immunitas, and the gift discourse that developed throughout the 20th century. The article expands upon Esposito’s interpretation of four theoretical sources that are crucial to his biopolitical perspective: Mauss and the gift-exchange tradition; Hobbes’s social contract theory, which Esposito presents as the anti-gift that founded modernity’s thanatopolitical ‘immunization paradigm’; Bataille’s dangerous concept of sacrifice, which gestures toward an affirmative biopolitical community; and, finally, Jean-Luc Nancy’s essay, L’Intrus, which reflects on the near-decade Nancy lived as the recipient of the gift of a transplanted heart. This discussion of Mauss, Hobbes and Bataille is used to further develop Esposito’s interpretation of L’Intrus in a manner that supports his conception of an affirmative biopolitics ‘of, not over, life’.
The Receding Animal: Theorizing Anxiety and Attachment in Psychoanalysis from Freud to Imre Hermann
Lydia Marinelli & Andreas Mayer
Animals played an important role in the formation of psychoanalysis as a theoretical and therapeutic enterprise. They are at the core of texts such as Freud’s famous case histories of Little Hans, the Rat Man, or the Wolf Man. The infantile anxiety triggered by animals provided the essential link between the psychology of individual neuroses and the ambivalent status of the “totem” animal in so-called primitive societies in Freud’s attempt to construct an anthropological basis for the Oedipus complex in Totem and Taboo. In the following, we attempt to track the status of animals as objects of indirect observation as they appear in Freud’s classical texts, and in later revisionist accounts such as Otto Rank’s Trauma of Birth and Imre Hermann’s work on the clinging instinct. In the 1920s and 1930s, the Freudian conception of patients’ animal phobias is substantially revised within Hermann’s original psychoanalytic theory of instincts which draws heavily upon ethological observations of primates. Although such a reformulation remains grounded in the idea of “archaic” animal models for human development, it allows to a certain extent to empiricize the speculative elements of Freud’s later instinct theory (notably the death instinct) and to come to a more embodied account of psychoanalytic practice.
In the 1940s–50s, one of the most central questions in psychological research related to the nature of neurosis. In the final years of the Second World War and the following decade, neurosis became one of the most prominent psychiatric disorders, afflicting a high proportion of military casualties and veterans. The condition became central to the concerns of several psychological fields, from psychoanalysis to Pavlovian psychology. This paper reconstructs the efforts of Chicago psychiatrist Jules Masserman to study neurosis in the laboratory during the 1940s and 1950s. Masserman used Pavlovian techniques in a bid to subject this central psychoanalytic subject to disciplined scientific experimentation. More generally, his project was an effort to bolster the legitimacy of psychoanalysis as a human science by articulating a convergence of psychoanalytic categories across multiple species. Masserman sought to orchestrate a convergence of psychological knowledge between fields that were often taken to be irreconcilable. A central focus of this paper is the role of moving images in this project, not only as a means of recording experimental data but also as a rhetorical device. The paper argues that for Masserman film played an important role in enabling scientific observers (and then subsequent viewers) to see agency and emotion in the animals they observed.
Tanya Cassidy’s and Abdullahi El Tom’s “Ethnographies of Breastfeeding: Cultural Contexts and Confrontations” by Ben Kasstan
Bloomsbury, 2015, 255 pages
Ethnographies of Breastfeeding offers a timely insight into how milk feeding is confronted in multiple socio-cultural and political contexts. The edited volume comprises twelve chapters which together explore the boundaries and contentions that milk flows across. By aggregating the historical and ethnographic chapters, the reader can devise how ‘traditional’ or past practices (such as wet-nursing) are now taking on more emergent forms of distribution (such as milk banks and sharing). Offering much more than a study of conceptual shifts over time, the various takes on the ‘product’ and ‘process’ of milk feeding as a reproductive and socio-political conduct make the book a fascinating read.
In her bold foreword, Penny Van Estrik immediately challenges the reader to reconfigure their views and positionality of breastfeeding by referring to it as ‘human milk’ rather than the status quo of ‘breastmilk’. After all, she asks, ‘we don’t call cows’ milk udder milk – why stress the container over the species?’ Perhaps this simple change in how milk feeding is regarded will be a first step in pushing into the shadows the primary status of the breast in the ‘West’ as hyper-sexualized. This opportunity, however, is lost by Van Estrik’s term of reference remaining largely in the foreword and not being used exclusively in the volume’s successive chapters. It seems curious that there is no common stance, especially when ‘confronting’ practices of (breast)milk feeding is an obvious objective of the book and etched in the title. Whilst the editors note that ‘human milk comes with its own baggage’ (p. 9), the absence of a conceptual consensus in how to appropriately address (breast)milk arguably weighs it down further.
A range of chapters investigate the contentions that arise out of the intersubjective relations nurtured through milk. It is perhaps here that the breadth of the book really shows, with insights into how intersubjectivity is shaped by the channels that milk forges between people. This is broadly illustrated through processes of distribution that present interesting implications for social norms, ethical debates, and also the medicalization of reproductive conducts; such as milk sharing, kinship, donation, and ‘lactation surrogates’ and surrogacy.
The volume goes beyond these emergent processes of distribution to offer powerful accounts of how milk and infant feeding is problematized by social norms and protocols. These include debates of what is considered to be appropriate mothering and parenting, or what is considered an appropriate social education and ‘culture of taste,’ both discussed in the context of France. It also becomes clear how milk and infant feeding is entangled in conflicting discourses of biological and social risk (discussed below).
Milk feeding as an embodied process is seen firstly in the context of Brazil and the prenatal expectations and intentions of primigravida or first-time mothers. The conclusions that Alanna Rudzik raise based on her research in the margins of São Paulo are of global concern; along with the staggering abandonment of mothers nursing their babies, there has been a loss of embodied knowledge as to how milk feeding is a meaningful process – making medicalized representations of milk as a product often the sole or dominant construct.
De-medicalizing milk is a point taken up by Aunchalee Palmquist in her study of milk sharing, which she frames as both altruistic and an act of resistance to biomedical constructions of human milk as a biohazard. With public milk sharing showing no sign of being harnessed, the practice may become an interesting area of collaboration with health authorities, in order to avoid confusing and contradicting their messages that milk can be both ‘best’ and bio-hazardous. This argument is then made all the more interesting by the fluidity between emerging and historical forms of milk sharing (see Cassidy, chapter 3).
Whilst milk sharing is known to forge kin relations in Islam it does, by virtue of this, also create social restrictions for marriage that need to be navigated. Ethnographic chapters offer fascinating accounts of the interplay between socio-religious codes, constructions of kinship, and the anonymity provided by donor milks (as opposed to personal relations). This is illustrated in the context of Moroccan women who have migrated to Italy (Rossella Cevese) as well as a beautiful account of the Berti of Northern Darfur that is semi- auto-ethnographic (Abdullahi El Tom).
Taking chapters eight (Alice Desclaux and Chiara Alfieri) and nine (Anne Matthews) together, the relation of infant feeding to transmission risk of HIV/AIDS is both contextualized and compared. Here, we understand how mothers in their lived realities of sub-Saharan Africa actualize health messages for infant feeding. Guidelines create implications which mothers need to negotiate, particularly the strategies and tensions in balancing infant feeding alongside reducing the risk of transmission or complete risk elimination.
Equally interesting are the cultural and socio-political conditions which make guidelines difficult, and perhaps impossible, to achieve. The demand on HIV-infected mothers to comply with protocols (either exclusive milk or formula feeding) can, for instance, reveal their status by virtue of having to avoid certain social norms or gestures. This enmeshes women in competing notions of “risk,” in terms of child health but also social stigma. By illustrating the cultural, socio-political, and ethical implications of guidelines, chapters eight and nine offer a particularly pragmatic edge to the volume.
Tanya Cassidy and Abdullahi El Tom’s edited work adds to the body of anthropological literature on milk feeding, such as ‘The Anthropology of Breastfeeding’ (edited by Vanessa Maher, 1995) and ‘Breastfeeding: Biocultural perspectives’ (edited by Patricia Stuart-Macadam and Katherine Dettwyler, 1995). Putting aside the edited collection’s achievements and opportunities, it does have some notable limitations.
Studies that consist of interviews and short-term observations are not necessarily ‘ethnographic’. Like all anthropological studies of health, understanding the contexts in which people encounter and navigate milk feeding requires substantial and immersive participant-observation alongside multiple methods to synthesize results. This allows, as Melissa Parker and Ian Harper assert, researchers to ‘define and re-define the questions as they grapple with trying to understand the interaction between people and ideas’ (2006: 3). Whilst some chapters offer a fantastic plurality and integration of research methods, others seem to rely on data only from interviews and might therefore not be seen as ‘ethnographies of breastfeeding’.
An ‘ethnography’ implies a written analysis of participant-observation. By virtue of this, an ‘ethnography’ should offer a holistic insight into the cultural and socio-political terrain in which a particular group relates to health and the body (see Russell and Thompson 2000 for a lengthier take on this). Although this does not discount knowledge produced through interviews alone (which presents its own advantages), such results might not be fully immersed in the contexts they are born from. For this reason, perhaps the volume is better described as a compendium or anthropological anthology of breastfeeding. Many chapters also appear as ‘ethnographic’ essays, and few of the contributors engage in theoretical debates to situate milk feeding in the broader anthropological analysis of emerging forms of reproductive care and cultures, as well as the control they are subjected to. From this perspective, the collection does not fulfill its potential.
Tying many of the book’s threads together, Vanessa Maher offers a concluding chapter that succinctly demonstrates, to me at least, why the study of milk feeding is neither marginal nor an issue confined to feminist theory or women’s health. It is instead entangled in issues of heath cultures, conducts, and cosmologies; power and governance of sexuality and the body; as well as the rigidity of social norms and expectations which all impact on maternal and infant health. It should therefore be seen as an area of critical enquiry, par excellence, for medical anthropology and aligned disciplines.
Emphasizing human milk as a ‘product’ in previous studies and public health strategies has weakened our understandings of milk feeding as a ‘process,’ a resolve offered by this book. The contexts and controversies that are unravelled in Ethnographies of Breastfeeding makes it a great addition to undergraduate and postgraduate studies of reproductive care and maternal and infant health. However, its merit should not be contained in the academy, and offers case studies for advocacy and stakeholder groups to inform their approaches to – and advocacy of – milk feeding.
Ben Kasstan is a Wellcome Trust funded (Society & Ethics) PhD candidate in the Department of Anthropology, Durham University (UK). His research explores the complex ways in which Haredi Jews navigate mainstream healthcare services, in the specific context of maternal and infant care.
Maher, Vanessa. 1995. The anthropology of breast-feeding: Natural law or social construct. Oxford: Berg.
Parker, Melissa, and Ian Harper. 2006. The anthropology of public health. Journal of Biosocial Science, 38: 1-5.
Russell, Andrew, and Mary S. Thompson. 2000. Introduction: Contraception across cultures. A. Russell, E. J. Sobo, and M. S. Thompson (eds), Contraception across cultures: Technologies, choices, constraints. Oxford: Berg, pp. 3-25.
Stuart-Macadam, Patricia, and Katherine A. Dettwyler. 1995. Breastfeeding: Biocultural perspectives. New York: Aldine de Gruyter.
As a visual anthropologist, I went to the field with the intent of making a documentary film about one of my informants, while also conducting ethnographic research with sex workers who worked on the streets of the historic district of Quito, Ecuador. Over the three years I ended up staying in the field, I spent time with 40 women. I examined how they negotiated their multifaceted identities as mothers who were also sex workers—subjectivities frequently viewed as mutually exclusive in Latin America, where religiously inflected gender norms often position mothers as saint-like figures in the social imaginary and sex workers as fallen women, sinners in the eyes of the Catholic Church. I planned to make a film that would use one woman’s story to represent the lives I saw around me—a narrative based on a single mother who had turned to sex work to support her children. Instead, I made a film about an exception. This case is about this (mis)representation.
In Ecuador and throughout Latin America, where sex work is decriminalized, prostitution is a viable work option for women who lack formal education. Although they typically earn roughly the same amount as the other jobs they qualify for in the domestic service industry or manufacturing sector, these women chose sex work, and in particular, street prostitution, because as freelance workers they could set their schedules around the needs of their children. Indeed, the women who solicited clients on the streets of Quito’s historic center worked regular 9:00 to 5:00 hours, coming and going as they pleased in the middle of the day to shuttle their children between school and daycare.
They also confined their work to daylight hours because they worked in a neighborhood that transformed into an open drug market at night. They were not organized in any formal way, but due to the rapid gentrification occurring throughout the historic district, my informants were starting to unite to fight for their right to remain in the area. In my film, I wanted my viewers to see that these sex workers were typical Ecuadorian women, who had jobs that they treated like any other.
It will resonate with anyone who has ever made or attempted to make a documentary film, that I had series of false starts. I started filming Javier and his children one day while waiting for my intended protagonist to show up. Eventually, Javier and his children became my primary protagonists. He was the partner of one of the sex workers—Kati—and was always on the streets. Their household was unusual for Ecuador: Javier was the main childcare provider for their three children, while Kati supported the family through sex labor. Their youngest child, Josue, was born with severe cognitive and physical delays and needed full-time care, which Javier lovingly provided. In fact, part of why Javier was the principal parent because it was he, rather than Kati, who had the patience and skill to care for Josue, as my film depicts in several raw, emotional scenes.
Javier, his children, and I spent our days on the streets so it comes as no surprise that he became one of my closest informants. Javier described the complex social relationships, and in particular, the dynamics of drug trafficking in the neighborhood. Early on, he established himself as my unofficial bodyguard during fieldwork, a role magnified once I told him my plans to start filming. Javier thought I was extra vulnerable in the area as an outsider, which was probably true, though over my three years in the field, I became comfortable and as long I left before sunset, I always felt safe. We made a deal that he would look after me, and in exchange, I would take him and his children to Carmen’s cafeteria, where lunches costs $1.50 for soup and a main course.
Even though I had been worried about the ethical issues involved with making a film with any of the sex workers, my discomfort was compounded with Javier and Kati because they were more marginalized than my other intended protagonists. They were both addicted to base, a yellow powder that has a similar effect to crack cocaine. Significantly cheaper than cocaine at $1 a baggie, base is the drug of choice of South America’s most impoverished citizens. Although the possession of all drugs for personal use is now legal in Ecuador, I was worried about exposing their consumption. Though it was farfetched, I wondered if they could get in trouble with Ecuadorian child protection services. I was also uncertain to what extent their families knew about their drug use and Kati’s involvement in the sex industry.
I discussed my plans with Javier and Kati for the final product—that I hoped the documentary would travel widely on the international film festival circuit, obtain theatrical or televised release, become available publicly online, and ultimately, receive distribution. There was the potential for countless people to become intimately acquainted with the details of their lives, which anyone, regardless of their subject position, might feel uncomfortable with, but for individuals who were already facing discrimination and stigmatization, the stakes seemed particularly high.
I was particularly cognizant of how the final product might produce surprising results as neither my protagonists nor I could have anticipated the success of my first film, Carmen’s Place (2009), which focused on transgender teenage sex workers living at a homeless shelter run by an Episcopal priest in Queens, New York. It played widely on the international festival circuit, obtained distribution, and is still in circulation today. I had thought I was making a film in obscurity that would never amass a public audience, so I had not approached my protagonists with the same caution. The success of Carmen’s Place caught us all off guard, but luckily, the people in my film had been supportive of me throughout the process and were pleased with the end results.
Having learned my lesson from Carmen’s Place—that my film with Kati and Javier might circulate more widely than I anticipated and that I would not be able to control its path once it was released—I started running through possible outcomes. What if, for example, Kati’s mother was to find out about her drug use by watching my documentary on You Tube one day? (This particular worry turned out to be moot because during the filming, Javier, desperate to get Kati into rehab, told her mother every detail of their lives.) What if my narrative about Kati was viewed as representative of all the sex workers in Quito’s historic center? I did not want my audience to associate drug use with sex work, since most of the women did not consume drugs. Nonetheless, I was intrigued by Kati and Javier’s story because they were one of the few dual-parent households that had a father as the primary child provider that I had come across in Ecuador.
Filming went relatively smoothly for a while, until “it” happened—the major climax of the story. Kati disappeared. I had become extremely close to them by that time and when Javier called me to say that Kati had not come home in two days, I feared the worst. I was absolutely distraught and as Javier and I checked the city’s morgues, hospitals, and prisons, continuing my film was the last thing on my mind. I have almost no footage from that day, or the days that followed. The footage I do have is terrible quality; as the snippets I include in the film show, much of it is out of focus, has inconsistent audio tracks and is riddled with other technical difficulties. For many in my filmmaking circles, this wrinkle in the plot was viewed as narrative gold: my film had achieved a punctuated climax that many other filmmakers only dream about. But for me, due to the unusual duration and intensity of my filming Javier and Kati, my interpersonal relationships with them took precedence over getting the story. My professionalism as a filmmaker had worn thin, which I accepted as a natural consequence of this project.
Filming came to a halt in the days and weeks that followed Kati’s disappearance as we began to realize what had happened. Kati had moved to a nearby city, Ambato, with her lover and she was not coming back. Javier and the children went back to his family’s house in Guayaquil—his natal city on the coast, while Kati and her new partner established their lives in Ambato. At this point, I decided to put the film to rest. It had taken an emotional toll on me and I felt depleted. Now that Kati and Javier were living in different cities in Ecuador, I also knew it was not feasible to continue on a practical level. Kati had left her children and I did not want to make a film about a “bad” mother.
However, for my own sake, I felt compelled to go to Ambato to find Kati to verify that she was alive and well. I brought my camera in case she wanted to record an interview about the struggles she had faced leading up to her decision to leave. When I finally found her in the red-light district, Kati wished to share her story on camera.
This clip is from Javier’s first week back in Guayaquil, where he is staying with his brother in Kati’s absence. Prior to this, Kati and Javier had claimed that Josue’s developmental problems were related to Kati having fallen on three different occasions during her pregnancy; this is what they told doctors, family, and everyone on the street. But here, in the interview, Javier shares with the audience that Kati smoked base throughout her pregnancy with Josue, who was born with severe cognitive delays.
Everyone sympathized with Kati, but no one was fooled. It was common knowledge that Kati and Javier were addicts, especially since they procured base from dealers in the neighborhood and lived in a single occupancy hotel known for its drug consumption. When Javier showed up with Josue in his stroller, the sex workers were always cordial but as soon as they were out of sight, they gossiped wildly about Josue’s condition, all of them shaking their heads and tsk-tsking. As a result, the above clip is powerful because Javier finally acknowledges that Kati had never fallen during pregnancy.
Immediately following Javier’s disclosure, we see Kati share her story. This was the interview I filmed in Ambato after her disappearance. It was one of the last times I ever saw her. In the interview, Kati explains why she abandoned the family: she was fed up with Javier’s abuse, of being the breadwinner, and of working in the sex industry. The interview ends on a heartbreaking note. When asked whether she would see her children again, Kati wistfully states that she would indeed, once she gets her own apartment, where she will bring them—one day. We later learn that Kati does not contact her children over the next several years.
Although everyone understood why Kati would leave Javier due to abuse or because she fell in love with someone else, no one in their social circles, including her family, could comprehend why she would leave her children. Back on the streets in Quito, the sex workers were horrified by Kati’s decision, as many of them were single mothers who had turned to the sex industry to give their children a stable future.
I decided to continue with the film. I took a long break to regroup and figure out how to move forward. The film’s narrative arc ended up focusing on Javier’s redemption story. Over the next couple years, I traveled to Guayaquil once a month to film Javier as he gets back on his feet. Indeed, he makes a lot of positive changes. First and foremost, he gets sober after 33 years of smoking base. He also applies to government aid for families with special needs children and settles into permanent, family owned housing.
My story did not turn out to be about a sex worker or the plight of a single mother. Instead, it is the sympathetic portrait of a single father, the ex-partner of a sex worker, who may or may not have been abusive.
While conducting my research and in writing, I had not wanted to present sex workers in a bad light. In hindsight, I can see how problematic it was that I had wanted to construct a decidedly positive portrayal of sex workers’ lives, a portrayal reminiscent of the old ethnographic “noble savage” trope. In turning away from the story of a heroic mother and toward a struggling father, I have also seen the value of focusing on what is neither obvious nor representative.
Javier remains the only single father I have met in Ecuador. That I could have initially overlooked the value of his story, strikes me as telling of the lack of space that exists—not only in the gendered politics of Ecuadorian life, but in anthropological stories as well—for men to be caregivers.
This is an important lesson for the anthropology of sex and gender. As a woman interested in gender equality, compelled to study female sex workers because I was drawn to their specific struggles as women, it finally dawned on me the extent to which I had privileged the female experience in all of my work. Although I had been hesitant about using Javier as the protagonist because I had wanted to do a film on a single mother, the film is first and foremost a story about parenthood—not a simple, glorious parenthood, but a messy parenthood, fraught with contradiction. In this sense, my documentary is not just a (mis)representation, but it is also an interference, shifting the collective gaze of sex work away from the body of the woman, while making room for vulnerable, nurturing masculinities to be part of the story.
The story I set out to tell never materialized, but as is often the case, I ended up with something much more powerful. Lesson learned. As filmmakers and ethnographers, our most compelling contributions are often those that emerge once we let go of our burdens of representation—in the sociological sense—of having a case stand in for the majority.
I am not suggesting that we no longer think about how we represent our informants. Making the film was arduous, but I am grateful for my anxiety along the way. I still remain unresolved and somewhat uncomfortable with Kati’s portrayal, which is part of the reason I write to address these issues. Representation of any sort is fraught, its ethics slippery rather than black or white. Perhaps that discomfort is part of the exchange, something that accompanies the gift of my protagonists’ stories; perhaps the question—could it have been done better—is something that should haunt us, forming part of our ethical responsibility.
Anna Wilking is a writer, anthropologist, documentary filmmaker, and adjunct professor based in Brooklyn, NY. She is also a community organizer, working with undocumented Latina sex workers in the South Bronx. She earned her Ph.D. in cultural anthropology from New York University in 2015. Her research focused on street prostitution in Quito, Ecuador and she is currently writing a book about her work. Sea La Luz (Let There Be Light) http://belightfilm.com/ won best graduate student film of 2014 and has screened in festivals internationally.
mediating microtubules netting and nesting
through boundaries permeable or/and with a gloss of seal
with folds and gullies
muted quiet shouting rages
irritating and porous
insecure uninsulated exposing
falsely secure muttering safewords
holding space for the fragile and vulnerable
us all embraced within
bounding palpating palpitating edges
clinging together in a forest clearing.
Suzanne Cochrane, who teaches at Western Sydney University, has had a 30-year career of study and practice of Chinese medicine. She is interested in the practice of Chinese medicine and the transmission of skills – how do we (and how do we learn to) work well with other people’s vitality? Doing an acupuncture related doctorate has led her to speak outside the discipline of Chinese medicine. She has used qigong disciplines as a means to work with her own qi and connect with the wider matrix of interior/exterior intra-actions.