health

Book Release: Pearl’s “Face/ On”

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Coming April 2017 from The University of Chicago Press is Sharrona Pearl’s Face/ On: Face Transplants and the Ethics of the Other. This engaging exploration of face transplantation is the first comprehensive cultural study of the surgical procedure. Using bioethical and medical reports, media coverage, hospital records, personal interviews, and more, this interdisciplinary study discusses the significance we place on facial manipulation, facelessness, reconstruction, identity, and sense of self. Are our identities attached to our faces? If so, what happens when the face connected to the self is gone or replaced? This book will be of interest to medical and psychological anthropologists, bioethicists, medical professionals, those in the media and beauty industries, and cross-disciplinary scholars in the medical humanities.

To learn more about this upcoming release, click here.

About the author: Sharrona Pearl is an Assistant Professor at the Annenberg School for Communication and the Gender, Sexuality, and Women’s Studies Program at the University of Pennsylvania. She is a theorist of the face and body, gender and sexuality, disability and critical race theory, and cinema and media studies. She has explored the meaning of the face previously in About Faces: Physiognomy in Nineteenth-Century Britain, released in 2010 by Harvard University Press (available here), and is the editor of Images, Ethics, Technology (Routledge, 2016), the latest volume in the Shaping Inquiry in Culture, Communication and Media Studies series.

Special Issue 2016: The Clinic in Crisis

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To help kick off a new year of articles, books, and highlights, Springer is featuring the June 2016 special issue of Culture, Medicine & Psychiatry, The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval, as part of a larger group of Special Issues in Social Sciences. Each article in the special issue is available for free here until February 3, 2017.

Over the summer we spotlighted several original papers from this special issue:

  1. Salih Can Aciksoz’s Medical Humanitarianism Under Atmospheric Violence: Health Professionals in the 2013 Gezi Protests in Turkey
  2. Emma Varley’s Abandonments, Solidarities and Logics of Care: Hospitals as Sites of Sectarian Conflict in Gilgit-Baltistan
  3. Elly Teman, Tsipy Ivry, and Heela Goren’s Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control

Each highlighted article discusses medical neutrality in areas of political conflict and how clinical space can be an extension of violence. While many clinicians strive to maintain an environment of safety and neutrality in the hospitals and clinics, the locations are routinely entangled with positions of violent local and international political struggles. The ethnographic accounts in each of the featured articles address the concept of “medical neutrality” – the ethical norm that medicine should be practiced impartially – in the context of conflict and social unrest, and suggest medical neutrality may work as a tool that is deeply cultural, social, and political.

Book Release: Solomon’s “Metabolic Living”

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Newly released this May 2016 from Duke University Press is Harris Solomon’s Metabolic Living: Food, Fat, and the Absorption of Illness in India (available here.) In this text, Solomon takes an environmental approach to obesity as a global problem, drawing on ethnographic fieldwork in Mumbai, India. Rather than reading obesity as the result of the exportation of Western diets and food items, the author addresses food, fat, and the body as ‘porous’ with the city and the state. Obesity and diabetes, Solomon argues, are a matter of “absorption” between bodies and the environments in which they operate. Clinics, social service offices, food companies, markets, and kitchens exist between the domains of the body and the state: sites at which the relationship between the individual body and the larger societal structures emerge and develop, altering local experiences of obesity, food, and metabolic illnesses.

This text will interest medical social scientists and scholars of medical humanities interested in the intersections between urban life and human health, and between the environment and the body.

About the author: Harris Solomon is Assistant Professor of Cultural Anthropology and Global Health at Duke University.

Issue Highlight Vol 40 Issue 3: Asperger’s Syndrome, Subjectivity and the Senses

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This week, we will highlight an Illness Narrative from the September 2016 issue of the journal (available here). Here we feature Ellen Badone, David Nicholas, Wendy Roberts, and Peter Kien’s article “Asperger’s Syndrome, Subjectivity and the Senses.” To read the full article, click here.

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As previous blog highlights suggest, the intersections of research and illness narratives are important to an anthropological perspective on subjectivity and experience. Badone and colleagues situate their article within narrative phenomenology. They discuss how constructing an illness narrative gives patients and families hope, and frames their experiences in a positive direction. The personal narrative, then, allows individuals to express their agency in hostile structural and environmental settings. The narrative also serves as a valuable first-hand account from which medical anthropologists can learn more about the subjective experience of illness.

The authors perform a close reading of an autobiographical narrative recounted by Peter, a young man diagnosed with Asperger’s Syndrome, a type of autism spectrum disorder (ASD.) Badone and colleagues aim to describe Peter’s case to widen understandings of the lived experience of people with autism. Responding to Olga Solomon’s 2010 article “Sense and the Senses: Anthropology and the Study of Autism,” this paper calls into question key assumptions in the clinical and popular literature about ASD relating to theory of mind, empathy, capacity for metaphorical thinking, and ASD as a life-long condition.

Badone and colleagues begin with a brief history of the diagnostic label of ASD, then describe the ethnographic-autobiographical process. Peter, the pseudonym chosen by the young man whose story is told in this article, reflects on his life experiences and articulates his awareness of autism and its impact on his life. An important recognition that Peter makes is that he senses many of the places he encountered were characterized by the “opposite of accommodation.” In the context of his elementary and high school for example, Peter describes how his need for calm and respite were disregarded in the noisy, abrasive environments. But it is Peter’s mother who is his metaphorical, and social, link to the world he felt dislocated from. Peter describes how it was his mother’s love and guidance which kept him alive and motivated to improve his life.

As Peter continues to narrate his experiences, however, he begins to intentionally seek out interactions in unwelcoming social environments. To Badone, Peter’s later decisions to submerse himself in activities that he found difficult, such as unexpected social situations and interactions, was an unconscious therapeutic response. This response mirrored the principles of cognitive behavioral therapy (CBT). To Badone’s astonishment, Peter had unintentionally started a treatment regimen to gradually lessen his anxiety, decrease his “meltdowns,” and become more independent. But to do so, Peter had to alter his own connection to a social environment that initially felt closed to him.

Badone and colleagues conclude, upon analyzing Peter’s narrative, that quality of life improves when individuals with autism are allowed to flourish in a social milieu of acceptance and understanding. Through the narrative, and through phenomenological examination of moments in Peter’s life, Badone and Peter hope to foster understanding and to urge others to create inclusive communities where social interaction is supported and individuals are not made to feel unwelcome. They seek to make autism more coherent to the non-autistic world and thereby to promote the larger ethical goal of creating flexible communities open to accommodating neurodiversity.

Blog Archive: ALS, Quality of Life, and Feeding Tubes

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This week, we revisit an article highlight that originally debuted here in May 2016. The highlight explores Pols and Limburg’s qualitative research on the role and meaning of feeding tubes in the lives of people with ALS. The article was officially released in our latest September 2016 issue of the journal, and is accessible in full here.

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Pol and Limburg begin by suggesting that while “quality of life” has been transformed into a measurement used widely in health research, it is difficult to operationalize when considering the daily, lived experiences of patients. Rather than approaching quality of life as a measure of attainment or “outcome,” the authors instead choose to reframe it as a continual process: one that is negotiated by individual patients differently. To examine what quality of life entails in a qualitative sense, the authors interviewed a population of people with ALS in the Netherlands with feeding tubes, or ALS patients considering one.

The literature on feeding tubes, the authors note, present many perspectives on the relationships between quality of life and eating. Some sources argue that feeding tubes deprive individuals of the important social aspects of eating, while others note that feeding tubes can unburden patients for whom swallowing and the physical actions of eating are difficult, uncomfortable, or impossible.

Patients and their families interviewed by the researchers, on the other hand, demonstrate such ambiguity towards feeding tubes contextually, depending on the stage of their feeding tube transition. For many, the initial decision to have a feeding tube placed in their bodies was an upsetting signal of bodily deterioration. The procedure itself, though technically minimally invasive, was also viewed with trepidation by patients. They worried about the hospital stay, and whether or not their body would be strong enough to adapt to the tube quickly. Pols and Limburg found that for those who had undergone the procedure, “there was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been.” The authors later note that some patients continued to view the feeding tube negatively after it was placed, envisioning it as an unnatural, upsetting addition to their bodies. Others described it as a “necessity” that came with quality of life benefits, although it was not pleasant to have attached to their bodies.

However, for many patients who had feeding tubes already implanted at the time of the study, the response could be notably positive. These participants noted that the devices restored their health and function, and lessened distressing symptoms like choking and an inability to swallow. For one patient, the feeding tube ensured that she received the appropriate calories, such that any food she decided to eat normally could be at her discretion. Other patients who cared less about eating a range of foods appreciated that the feeding tube rid them of the need to worry about what could be easily consumed.

The authors conclude that “the feeding tube can best be understood not as an intervention that causes ‘impacts on quality of life’, but as a technology or prosthesis that may bring different qualities and appreciations that may shift over time.” They add that the feeding tube acts as an intervention that re-orders daily life for patients coping with the a ‘new normal’ of chronic illness: rather than serving to balance “good” and “bad” qualities, as outlined in the disability paradox. Lastly, they remind readers that instrumentalizing “quality of life” risks losing these facets of illness experience. This term is deeply contextual, and responsive to the needs, expectations, and hopes of each patient undergoing treatments or coping with chronic conditions.

Fall 2016: Blog Update

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The Culture, Medicine & Psychiatry blog will return to regular, once-weekly updates next week on Wednesday, following our reduced summer upload schedule. In the meantime, our readers can access articles and illness narratives from our new September 2016 issue here.

In the coming weeks, check back on the blog for special article highlights from the new issue, as well as “From the Archive” features, news posts, book release updates, commentaries, and other entries at the blog. As always, we continue to welcome submissions of guest commentaries on the cultural, social, and humanistic study of health and medicine. Please contact our social media editor, Julia Knopes (jcb193@case.edu) for more information.

Best wishes from the CMP Editorial Team!

In the News: Health Disparities and Water Quality in the 2016 Rio Summer Olympics

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August 2016 – The 2016 Summer Olympic games in Rio de Janeiro, Brazil has dominated news headlines in recent weeks. The athletics event, taking place from August 5 to August 21, featured 207 countries in the Parade of Nations as well as the first ever Refugee Olympic Team. It is the first time the games have been held in South America. But besides highlights on the events and spotlights on athletes’ training regimens and backgrounds, there is another stream of news stories surrounding the Olympic Games. These stories have focused on two key public health issues related to this year’s Games: health disparities and water quality issues.

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Rio’s Olympic beach volleyball venue is on Copacabana Beach. Photo from Marcio Jose Sanchez for AP.

Only two years ago the FIFA World Cup was making similar headlines in Brazil. As reported in 2014, and highlighted in this blog[1], there have been past concerns about access to quality healthcare despite the surge of funds for the World Cup event. These reports unmasked a problematic system of health disparities to a global audience. The Daily Californian[2] stated that many Brazilians were “unhappy that their government [was] funding stadium renovations instead of spending on more instrumental matters like improved health care and emergency services.” Reports relating to the current Olympics have painted a similar picture for the present health scene. As Reuters[3] reported in December 2015, the governor of Rio de Janeiro declared a state of emergency “as hospitals, emergency rooms and health clinics cut services or closed units throughout the state as money ran out for equipment, supplies and salaries.” According to CNN[4], the financial crisis has been causing difficulties in the “provision of essential public services and can even cause a total breakdown in public security, health, education, mobility and environmental management.”. While the state of emergency declaration provides a critical 45 million reais ($25.3 million) in federal aid and may facilitate the transfer of future funds, estimates state that Rio de Janeiro owes approximately $355 million to employees and suppliers in the healthcare sector alone, and the state needs over $100 million to reopen the closed hospital units and clinics.[5] While the city of Rio spent approximately $7.1 billion on improving toll roads, ports and other infrastructure projects, the Brazil Ministry of Health devoted only $5.7 million to address health concerns[6].

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The Christ the Redeemer statue is visible above the Santa Marta favela in Rio de Janeiro. Photo from Joao Velozo for NPR. 

In addition to these issues (and the high-profile Zika virus, which is causing health concerns in multiple countries[7]), concerns surrounding water quality and cleanliness in Brazil has garnered considerable attention. A recent scene involving the diving and water polo pools turning a swamp-green color because of an algae bloom left some athletes complaining of itchy eyes.[8] While the Olympic Games have brought international attention to the impact of water quality on the athletes and visitors, the residents of Rio have been dealing with theses concerns on a daily basis for much longer. With almost 13 million people living in and around Rio, the current sewage system is struggling to cope. One news report[9] notes that “about 50 percent of what Brazilians flush down the toilet ends up in the country’s waterways. Diseases related to contaminated water are the second leading cause of death for children under five in Brazil.” Tests performed in a variety of areas, including the sailing venue of Guanabara Bay, over the course of a year found high levels of “superbugs of the sort found in hospitals on the shores of the bay.” The possibility of hospital sewage entering the municipal sewage system remains a concern.[10]

An economic recession, compounded by water concerns, political unrest, and a presently faltering healthcare system all leave many Cariocas— citizens of Rio– who rely on the public health system in a challenging and hazardous situation across the social, medical, and political spheres. With hopes of local profits from the Olympic Games ranging in the billions of dollars, much is at stake for both residents and investors.[11] Despite the risks and tribulations, many residents welcome the international event and attention, and credit the Olympics for cultivating “several underutilized, often abandoned spaces have been transformed to ones that appeal and cater to local residents”. Many “beautification” projects leave residents hoping the installation of new art and the newly constructed spaces will leave a lasting impression on its residents and visitors long after the games end.[12]  Despite this optimism, the citizens of Rio are not impacted equally by the Games.[13] The improved infrastructures will likely benefit those who already have access to services. Tourism, and tourism cash, has been weak in the favelas, or shantytowns, which house at least 25% of the population in Rio. The infrastructure inequities have even bypassed some neighborhoods entirely, leaving those residents out of the celebrations.[14]

Overall, these Olympic Games promise once again to bring the world’s cultures together in competition and camaraderie, yet they do not do so without controversy. This global spectacle illuminates athletics and sportsmanship, as well as the intersections between cultural events, politics and nationalism, power and profit, and community health. These larger issues lead to questions about what will happen to the residents of Rio after the Games have drawn to a close.

 

[1] https://culturemedicinepsychiatry.com/2014/07/11/news-the-2014-world-cup-and-healthcare-in-brazil/

[2] http://www.dailycal.org/2014/07/08/uc-berkeley-faculty-graduate-students-look-world-cup-different-light/

[3] http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[4] http://www.cnn.com/2016/06/18/americas/brazil-rio-state-emergency-funding-olympics/

[5]http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[6] http://wuwm.com/post/let-s-do-numbers-money-spent-rio-olympics#stream/0

[7] http://www.nytimes.com/2016/01/29/world/americas/brazil-zika-rio-olympics.html?_r=0

[8] http://uk.reuters.com/article/uk-olympics-rio-diving-pool-idUKKCN10O0UW?feedType=RSS&feedName=sportsNews

[9] http://wuwm.com/post/rios-water-problems-go-far-beyond-olympics#stream/0

[10] http://edition.cnn.com/2016/08/02/sport/rio-2016-olympic-games-water-quality-sailing-rowing/index.html

[11] http://www.newsweek.com/rio-2016-who-stands-benefit-successful-olympics-453094

[12] http://www.kvia.com/news/rio-olympics-bring-beautification-projects/40884340

[13] http://www.npr.org/sections/thetorch/2016/08/11/487769536/in-rios-favelas-hoped-for-benefits-from-olympics-have-yet-to-materialize

[14] http://www.reuters.com/video/2016/08/14/olympic-infrastructure-causes-suffering?videoId=369565427

Book Release: Eigen’s “Mad-Doctors in the Dock”

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Image via JHU Press website

To be published this November 2016 from Johns Hopkins University Press is Joel Peter Eigen’s Mad-Doctors in the Dock: Defending the Diagnosis, 1760-1913. This medical history examines the foundations and early development of the criminal insanity defense in England. Drawing on testimony and documents from almost 1,000 trials, this text examines how physicians, surgeons, and other health care providers connected diagnosis with legal culpability.  The text promises to carefully assess the dynamic relationships between criminal justice, mental health, medicine, and the emergent disciplines of forensic psychology and psychiatry. This book will be of equal interest to anthropologists of medicine and law, as well as psychological anthropologists, historians and sociologists of medicine, and cross-disciplinary scholars in the medical humanities.

To learn more about this upcoming release, click here.

About the Author: Joel Peter Eigen serves as the Charles A. Dana Professor of Sociology at Franklin and Marshall College as well as Principal Fellow (Honorary) at the University of Melbourne. This text is the third in a series that Eigen has published on the history of the insanity defense. The first book, Witnessing Insanity: Madness and Mad-Doctors in the English Court, was released in 1995 by Yale University Press and is available here. The second book, Unconscious Crime: Mental Absence and Criminal Responsibility in Victorian London, was published in 2003 by Johns Hopkins University Press. It can be purchased here.

Issue Highlight Vol 40 Issue 2: Global Health Diplomacy in Ethiopia

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Across the past few weeks, we have been spotlighting new articles from our June 2016 issue, which you can access in full here. The theme of this special issue is The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. This week, we visit Lauren Carruth’s article “Peace in the Clinic: Rethinking ‘Global Health Diplomacy’ in the Somali Region of Ethiopia.” You can read the full article at this link.

In this article, Carruth argues that the politics of global health manifest not only at the scale of “interstate” interactions between governments, NGOs, and international assemblies, but at the local and interpersonal levels between individuals who are giving, receiving, and managing clinical care in “politically insecure” places. Through ethnographic research on two health programs in the Somali region of Ethiopia, the author argues that medical care provision can alternatively strain and strengthen political relationships between people across ethnic and social boundaries.

For instance, Somali people in Ethiopia often refused to seek medical services from the local clinic, Aysha Health Center. Somali patients complained that the Habesha (a native Ethiopian group) nurses were insensitive and uninterested in treating their health concerns. Many Somali informants offered up the same story as evidence: three mothers went to the clinic, and their three children had different ailments. Yet the Habesha nurses did not examine the children, and offered the same drugs to each of the mothers without diagnosing each patient. Somali patients also had difficulty securing a translator who could assist them in conversations with clinicians, who spoke Amharic. The Habesha clinic staff countered that the Somali patients were adverse to biomedical care, instead trusting native folk healers over the clinicians. They added that Somali patients would not adhere to the medication regimens or treatment plans that they recommended. In this case, the friction between Habesha caregivers and Somali patients intensified long-standing ethnic and political tensions at the local scale.

Carruth presents another case, however, where medical aid eases inter-ethnic relationships and ameliorate social rifts between opposing groups. She describes a mobile UNICEF clinic staffed by two Somali clinicians of the Ogaden clan operating in Ethiopia. Though these Somali clinicians were caring for fellow Somali patients, the patients descended from a less politically powerful line which did not have the dominant social standing of the Ogaden: a clan with significant regional power in Ethiopia. Though the patients were of opposing clans, such as the Issa, the two clinicians listened intently to the patients’ complaints, recalled their family lines when they returned for further treatment, and even offered resources like supplementary nutrition to ailing patients despite UNICEF limitations on what types of patients could receive these rations. The patients adored the mobile clinic staff, and the clinicians became integrated into the marginalized communities they served. This example, Carruth notes, highlights the potential for medical aid to facilitate positive and deeply personal relationships between factions in regions that have otherwise experienced significant social unrest.

Carruth concludes that in order to successfully deliver medical aid to places encountering social upheaval or unrest, it is critical to unite oppositional groups within clinical spaces themselves. Providing medical resources and building clinics alone, she notes, fails to address the need to facilitate positive relationships between individuals mired in conflict. Instead, to ease political and social tensions, Carruth posits that clinics and similar treatment centers can serve as sites of caring, communal exchange between otherwise opposed social groups.

Issue Highlight Vol 40 Issue 2: Reproductive Experiences Amongst Haredi Jewish Women

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Over the next few blog updates, we will be spotlighting new articles from our June 2016 issue, which you can access in full here. The theme of this special issue is The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. In addition to articles that address the topics of societal unrest, political change, and human health, this installment also turns to how people navigate change and decision-making within the contexts of their own lives. Specifically, one article questions whether individual autonomy over medical decisions is a characteristic of medical care across cultural contexts. In Teman, Ivry, and Goren’s article “Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control,” we learn that the notion of reproductive choice and control does not cleanly map onto the procreative experiences of Haredi (ultra-Orthodox Jewish) women. To access this article in full, click here.

Reproductive technologies have expanded the range of procreative choices a woman and members of her family confront: should birth control be used to limit the number of children she wishes to have? Should assisted reproductive technologies (ARTs) be used to facilitate conception, or should a woman abort a fetus that has tested positive for a developmental or congenital ailment? The authors of this article suggest that in these discussions, another question has emerged. Are these decisions truly reflective of individual choice, or do individual mothers and members of their community perceive the reproductive course as one over which no person has ultimate control?

Amongst Haredi (ultra-Orthodox Jewish) women in both the United States and Israel, the authors observed another way that individuals framed their reproductive experiences. Rather than describing their procreative choices as a form of individual control over one’s life course, the Haredi women referenced hishtadlut, or obligatory effort: the notion that they were obliged to God to try to become pregnant, but not responsible for the outcome if they were unable to do so. In hishtadlut, women have “room for effort” in that they may flexibly interpret and enact what constitutes a serious attempt to become pregnant or maintain a healthy pregnancy per their religious duty to God to have children. In this explanatory framing, women recognize that they must consciously make choices that would enable God to enact a divine plan for them: however, they are not accountable for the outcome if, having invested the “effort,” God’s plan does not come to fruition or leads to the birth of a child with a developmental disability or congenital condition.

The concept of hishtadlut extended to the use of various reproductive technologies. For instance, there are many concerns about hereditary genetic illnesses like Tay-Sachs disease within the Haredi community. To ameliorate this issue, blood samples from young Haredi men and women enrolled in high school are collected and catalogued into an anonymous database. If two families are arranging a marriage between a son and a daughter, they are able to consult the database to confirm whether or not both individuals are genetic carriers of an illness. This prevents unions between two carriers who would have a greater likelihood of having a child with a genetic illness; thus a genetic carrier would be paired with a non-carrier spouse. Most women interviewed for the article agreed that this technological system facilitated the will of God, as it reduced the chance that a couple would face the difficulty of raising a disabled or an ill child. Here the technology is seen as a “blessing” from God, as it allows families and couples to avoid “heartbreak,” while bolstering a couple’s ability to have healthy children per God’s divine plan.

In other instances, technology is viewed as irrelevant out of the hishtadlut principle. For example, the Haredi women perceived genetic testing for fetal developmental or other congenital illnesses as having little purpose. In Jewish law, abortions beyond 40 days after conception are prohibited, and all fetal diagnostic testing occurs after this point in a woman’s pregnancy. Thus, the women held that the test was inconsequential, as God’s will for them and their fetus had already been ordained. If a baby was born with a disability, this was part of their fate as decided by God. Here “choice” is viewed as God’s choice for the mother and baby, rather than the mother’s own control over whether or not to give birth to a child with potential developmental or congenital conditions.

As Teman, Ivry, and Goren’s research illustrates, “choice” and “control” do not necessarily apply to the reproductive experiences of women and their families across cultures. Indeed, in a deeply religious community such as the Haredi Jews, “choice” is attributed to God while individual reproductive decision-making is cast as a means to allow God to work through individuals to enact divine will. Haredi women did not describe themselves as accountable for becoming pregnant (or having a healthy child), but they did feel obligated to use technologies and consciously make reproductive decisions or avoid certain interventions. These actions, they held, would enable God to direct their journey to motherhood and to fulfill their purpose as parents.