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AAA 2017 Session Highlight: Jonathan Metzl, “Negroes With Guns: Mental Illness, Gun Violence, and the Racial Politics of Firearms”

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This week on the blog we are highlighting an oral presentation given at this year’s annual American Anthropological Association conference in Washington D.C. by Jonathan Metzl entitled Negroes With Guns: Mental Illness, Gun Violence, and the Racial Politics of Firearms. The session was named “Critical Inquiries: Violence, Trauma, and the Right to Health” on Thursday, November 30, 2017. Metzl combined historiographical and ethnographic analysis to explore the connections between gun violence, mental illness, and shifting anxieties about race in the United States. Metzl discussed how decisions about which crimes American culture diagnoses as “crazy,” and which crimes it deems as “sane,” are driven as much by the politics and anxieties of particular cultural moments as by the innate neurobiologies of particular assailants. The presentation concluded by describing how racialized questions of whether “the insane” should be allowed to bear arms become the only publicly permissible way to talk about questions of gun control while other narratives, such as the mass psychology of needing so many guns in the first place or the anxieties created by being surrounded by them, remain silenced.

 

Metzl began his presentation by stating that after the recent and tragic Las Vegas mass shooting, he gave 58 interviews in only two days on “the insane politics of mass shootings.” The two main questions that get asked after each mass shooting are: “Is mental illness the cause of mass shootings?” and, “Will treating mental illness stop gun crime?” Both conservative and liberal media analyses include these types of questions, whether or not they ultimately claim mental illness as the answer (for example: NPR’s On Point, Politico, and Fox News). 

Yet Metzl asked, why do these mental illness questions follow after mass shootings? “Aren’t these questions starting to be ridiculous?” Metzl asked, after referring to a study published in the journal Aggression and Violent Behavior which found some mass murderers and serial killers have something in common: autism and head injury. Yet this study was criticized for fueling judgments about an entire section of society and further contributing to the mental illness-gun violence debate.

In some ways, linking mass shootings and mental illness makes sense. Mass shootings are beyond the realm of “sanity” and understanding. Metzl stated that constructing a binary of sane vs. insane, good vs. evil, may be a means of processing grief and uncertainty. Further, many of the mass shooting perpetrators in the last decades have displayed some kind of mental illness symptomatology before their crimes. Mother Jones published an investigation of US mass shootings from 1982-2017 including information on the shooter’s race, gender, prior signs of mental health issues, mental health details, and whether or not the weapons were obtained legally. But this information cannot lead to a causal argument.

These types of questions have ideological and political roots, and focusing exclusively on issues of mental health force other concerns out of the debate. At a National Rifle Association (NRA) press conference in December 2012, chief executive Wayne LaPierre suggested having “an active national database for the mentally ill” would help prevent gun violence. In 2013, Ann Coulter wrote a Sound Off on Fox Nation entitled “Guns Don’t Kill People, The Mentally Ill Do.” After the 2015 Planned Parenthood shooting in Colorado Springs, Paul Ryan called for a need to look at fixing our nation’s mental illness health system, not it’s gun legislation. Most recently, following news of the mass shooting of parishioners at a Sunday service at a small Baptist church in Texas, Trump proclaimed mental health was the overarching issue, not gun control, even before complete details of the shooter were known. 

Following this overview of political ideologies shaping the mental illness conversation, Metzl then asks, “What can reasonably minded people do to push back?”

Metzl then presented five talking points about important ways to push back against the mental-illness-and-mass-shooting account while still remaining respectful of mental illness, treatments, and medications. These talking points discuss why this association is problematic.

1. “It’s sample bias – and dangerously so…”: Mass shootings come to stand for all shootings. But mass shootings are not the only time we need to talk about gun violence, Metzl stated. When we talk about mass shootings, we are not talking about policy implications for everyday gun death. Every day gun violence, gun proliferation, the ability to buy guns through loop holes should all be part of the national conversation. Worryingly, Metzl states, the situation is about to get much worse. Today (Wednesday, December 6, 2017) the House will vote on a “concealed carry reciprocity” bill, creating a national blanket right to carry a concealed weapon across state lines. For Metzl, the point overall is that the mental illness narrative distracts from daily gun violence and the political negotiations behind gun regulations. 

2. “It’s stigmatizing and misrepresentative…”: Fewer crimes involve people with mental illness. People with sanity are much more dangerous, Metzl stated. People diagnosed with a mental illness are less likely to shot other people, therefore we should really be restricting guns from the sane. Further, Metzl stated that statistically there is no predictive value in using a mental illness diagnosis for gun crime. Individuals with mental illness are more likely to be shot by police than to do the shooting themselves. 

3. “It constructs false psychiatric expertise…”: Psychiatrists are being told they should be able to predict which of their patients may commit violent act. Yet the pool of people they see are not a high risk population. Metzl stated the public culture of fear may lead psychiatrists to feel culpable for the actions of their patients, over-report their concerns, and complicates the doctor-patient confidentiality bond. In the weeks before the Aurora, Colorado movie theater shooting, shooter James Holmes was seeing a psychiatrist specializing in schizophrenia. In June 2012 The Brian Lehrer Show discussed how psychiatrists determine red flags with their patients and when behavior is concerning enough to warrant further action with Columbia University Director of Law, Ethics, and Psychiatry Paul Appelbaum. 

4. “It detracts from awareness of true predictive factors for everyday gun violence…”: The mental illness narrative also detracts from other risk factors for everyday gun violence and mass shootings. Substance use or abuse, past history of violence, lack of gun training, social networks, and access to firearms are all important predictive factors for gun violence.

5. “It’s racist…”: Last but certainly not least, the construction of a mentally ill, dangerous, white, male, gun-owning “loner” is a political choice. The intentional presentation of the individual-isolated-from-society is not supposed to be representative of white culture. Yet in the 1960s, the FBI openly blamed “crazy” black “culture” for the rise of public black activist groups. In debates leading up to the Gun Control Act of 1968, the U.S. Government and mainstream US culture proclaimed links between African American political protest, guns, and mental illness in ways that intensified fears about black activist groups. For example, FBI profilers diagnosed Malcolm X with “pre-psychotic paranoid schizophrenia” and with membership in the “Muslim Cult of Islam” while highlighting his militancy and his “plots” to overthrow the government. The FBI also hung “Armed and Dangerous” posters throughout the southern states warning citizens about Robert Williams, the controversial head of the Monroe, North Carolina chapter of the NAACP author of a manifesto, Negroes With Guns, that advocated gun rights for African Americans. According to the posters, “Williams allegedly has possession of a large quantity of firearms, including a .45 caliber pistol… He has previously been diagnosed as schizophrenic and has advocated and threatened violence.”

These historical narratives were linked to black culture, not black individuals. Issues of race and insanity produced black male bodies coded as insane. This association fostered fears that helped mobilize significant public and political sentiment for gun control. Yet there are very different politics of the present day. Metzl states were are in a time when white shooters with mental illness beget reaffirmations of gun rights and groups that advocate anti-government platforms and support broadening of gun rights, such as the Tea Party, take seats in Congress rather than being subjected to police scrutiny. For much of our country’s history, guns marked whiteness. 

Metzl concluded his presentation with a discussion of a helplessness narrative. There is a kind of inaction about calling mass shootings and gun violence part of mental illness. Since we can not do anything about whether or not individuals have mental illness, it allows us to ignore the other issues and risk factors. This further constructs a kind of persons, not a composition of something larger and more systemic. The learned helplessness surrounding gun crime in the US makes hard rhetorical work to not look at whiteness and mass culture as part of the problem. 

Jonathan Metzl, MD, PhD is the Frederick B. Rentschler II Professor of Sociology and Medicine, Health, and Society, Director for the Center for Medicine, Health, and Society, and Professor of Psychiatry at Vanderbilt University. He is also the Research Director of the Safe Tennessee Project, a non-partisan, volunteer-based organization that is concerned with gun-related injuries and fatalities in the United States and in the state of Tennessee. His areas of expertise include mental illness and gun violence with a particular focus on gender and race.

Learn more about Jonathan Metzl at his website, available here.

Message from the AAA 2017 Annual Meeting

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The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the American Anthropological Association 2017 Annual Meeting in Washington, DC. This year’s 166th Annual Meeting will be held from November 29th through December 3rd, with session listings and other helpful information available here. The theme for this year’s meeting is Anthropology Matters!. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting! Next week we will feature highlights from one of the many excellent paper sessions.

As a reminder, we continue to accept guest blog submissions on topics spanning cultural, medical, and psychological anthropology and related disciplines in the social sciences and medical humanities.

Consider submitting an abbreviated version of your AAA conference presentation as a guest blog, or write a commentary on one of the keynote speeches at the event. We look forward to sharing the work and research of our readers with our colleagues on the blog! If you are interested in submitting a guest blog, please contact our social media editors, Sonya Petrakovitz at smp152@case.edu or Monica Windholtz at mmw106@case.edu for details.

Best wishes,

The CMP Editorial Team

 

Upcoming AAA 2017 Annual Meeting: Highlights of Scheduled Sessions

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This week on the blog we are highlighting two scheduled sessions at the upcoming American Anthropological Association 2017 Annual Meeting in Washington, DC from November 29th through December 3rd. Anthropology Matters!, the theme for the 116th AAA Annual Meeting, is a call to unite the field of anthropology, to embrace difficulty, and to promote the persistent relevance of what anthropology is and does. As stated on the Annual Meeting website, available here, anthropology is best at describing the past, exploring the present, predicting the future, and navigating the processes of being and becoming human.

The first scheduled session highlighted is entitled Biomedical Subjectivities and Imagined Futures (2-0145) and features oral presentations by Kimberly Dukes, Markus Idvall, Leslie Carlin, Dana Ketcher, and Rebecca Grunzke. The second scheduled session is an Executive Roundtable session entitled Do Black and Brown Lives Matter to Anthropology?: Race, Bodies, and Context. This roundtable features John Jackson, Norma Mendoza-Denton, Aimee Cox, Jonathan Rosa, and Vanessa Diaz.

Biomedical Subjectivities and Imagined Futures (2-0145) 

Wednesday, November 29th – 12:00-1:45pm in Marriott Ballroom Salon 1

– Oral Presentation Session –

Kimberly Dukes (Co-Authored with Aaron Seaman) – University of Iowa

Title: “Let’s Take a Peek”: Looking At, For, and Away From Future Cancers

Abstract: This paper considers what it means to be living, for a time, “between” illnesses, a particular moment of what Lochlann Jain has called “living in prognosis.” How—ostensibly from a place of “health,” as some would define it—is one’s reckoning of the future shaped by prior experiences? Are there ways of imagining an embodied future other than the overdetermined eventuality of recurrence or other bodily breakdown? This paper contemplates how people who have been successfully treated for head and neck cancer envision themselves and their futures as they consider whether to undergo screening for lung cancer. Drawing on semi-structured, in-depth interviews with patients and providers at a Midwestern US academic tertiary care center, we explore the tension between some people’s reliance on surveillance as an active health practice and others’ comfort with uncertainty. As patients situate themselves in the space between cure and potential recurrence, they sometimes resist biomedical understandings of evidence, harms, and risks. As participants explore the costs—and even the perceived gifts—of cancer in their lives, they draw on other sorts of evidence, including fun lives and prices paid; personal and social narratives of cancer as something to be surveilled, cured, or merely interrupted; and the value of different kinds of knowing. Working in this context, then, the paper contributes to anthropological conversations about the ways that people make sense of the precarity of life, especially within a US biomedical landscape increasingly contoured by anticipatory conceptualizations of chronicity and risk.

 

Markus Idvall – Lund University

Title: Synchronizing Oneself with Science: How Individuals with Parkinson’s Disease Go Along with Clinical Trials

Abstract: Sweden has a long tradition when it comes to biomedical research on Parkinson’s disease. For example in the 1980s the first neuron cell transplantation to a Parkinson patient in the world took place in Sweden. Today Swedish Parkinson scientists, in collaboration with researchers in other countries, continue the search for a cure for Parkinson’s disease within several research fields. In the last years I have followed a biomedical research project in Sweden focused on realizing clinical trials with Parkinson patients within the field of cell transplantation. In my work I have conducted interviews with patients, researchers and medical staff as well as observations in hospital environments and in contacts with patient’s organizations.
My aim with this presentation is to explore what constitutes a clinical trial from the viewpoint of the patients. How does this biomedical research matter for trial-participating as well non-participating patients? How does one as patient follow and understand the clinical trials? How does one move along in relation to what one, on the basis of one’s degenerative illness, perceives as the progress of science? Individuals with Parkinson are, in this sense, temporal beings in whatever they do or calculate in relation to science. Taking part in clinical trials is viewed as a way of synchronizing one’s self with what one experiences as the tempo of practiced science. In my presentation I will explore different concepts for how a form of time sensitivity can be studied among patients.

 

Leslie Carlin (Session Chair, Co-Authored with Sonya Allin, Sarah Munce, Christine Ibrahim, Susan Jaglal) – University of Toronto

Title: Inside the BMD Black Box: Investigating the Performance and Production of Bone Material Density Tests

Abstract: Most research into the social context of bone mineral density (BMD) testing has focused on its consumers, mainly “older” women, and the effect of such tests on perceptions of aging bodies, in particular on the frightening risk of hip or other fragility fracture. BMD tests, which detect thinning (osteoporotic) bone, provide information on an invisible, painless, and otherwise unknowable aspect of bone health. From a health policy perspective, the cost of evaluating individuals’ fracture risk through such testing must be measured against both the expense of treating fracture patients and the trauma of injury. Between patient and policy, and very much under-investigated, is the material and social production of the BMD test itself, a procedure that often takes place in small (box-like) rooms using carefully calibrated machines operated by X-ray technologists with specialized training in BMD. In Ontario, Canada, the Ontario Health Insurance Program (OHIP) is a single-payer government-funded system that pays for BMD tests for individuals who meet OHIP’s eligibility criteria; these are based on a referring physician’s assignment of a “risk category.” In order to ensure reimbursement, the scanning facility’s intake staff must align the request with the OHIP risk designations, a process that is subject to judgement and error. “It’s always a hardship,” says one technologist. Using data from interviews with personnel at twelve scanning facilities in Ontario, we consider BMD testing as the creation of a ‘desirable’ artifact—the scan itself and the report created by the ‘reading physician’—in order to explore how a process, like a thing, can have a fluid and dynamic social life.

 

Dana Ketcher – University of South Florida

Title: Value of Genetic Testing and Counseling for Cancer Syndromes: Perspectives of Women at Genetic High Risk

Abstract: Genetic counselors might contend that the knowledge derived from the results of genetic testing (GT) for hereditary cancer syndromes is the primary characteristic that makes testing valuable. The knowledge and information gained from GT results inform cancer screening recommendations and potential prophylactic surgeries, as well as who (if anyone) in the patient’s family should also undergo testing. However, less is known about the value of GT as determined through the experiences and perceptions of patients – what I call the ‘folk knowledge’ of GT. This paper will discuss this ‘folk knowledge’ and the value assigned to GT and genetic counseling by women determined to be at high genetic risk for hereditary breast and ovarian cancer. While biomedicine places a premium on technology, how is that technology used and/or perceived by women who are exposed to it? Ethnographic research with women who have undergone testing, and also those who have refused, helps illustrate the ways in which women determine if, and what, kind of value GT has in their perspective.

 

Rebecca Grunzke – Mercer University

Title: Is There a Doctor in the Mouse? Proposing a Cyberethnography of Online Diagnosers

Abstract: In 2008, Microsoft conducted a study of Internet users’ experiences with web searches concerning medical concerns and self-diagnosis. The result was the first systematic study of cyberchondria, defined by researchers Ryen White and Eric Horvitz as the “unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web.” Researchers from the Pew Research Center’s Internet & American Life Project reported in 2013 that 35 percent of U.S. adults say “they have gone online specifically to try to figure out what medical condition they or someone else might have,” referring to people who search for such medical information on the internet as “online diagnosers” (Fox and Duggan 2013). According to the Pew study, a total of 80 percent of Internet users, or about 93 million Americans, have searched for a health-related topic online, indicating that searching for health or medical information is currently one of the most popular online activities (Weaver 2013). This finding also provides significant support for both increased spending online by the health care industry to reach its consumers and the prediction by technology firm Jupiter Research that “health care companies will spend $1 billion online within the next five years” (Weaver 2013). With an estimated 24 million U.S. residents poised to lose health care coverage by 2026 under the current iteration of the American Health Care Act (Congressional Budget Office 2017), these numbers are likely to increase, much to the chagrin of some medical professionals responding to the trend of online diagnosis, who conclude that many people prefer Google over their doctors for medical advice (Samadi 2016). While attempting to self-diagnose at home and making decisions whether or not to seek a clinicians help are not new, websites giving medical advice are a recent edition to a household’s information resources (Fox and Duggan 2013). The Pew study found that women, younger people, white adults, those from households earning $75,000 or more, and those with a college degree or advanced degrees have a higher likelihood than their counterparts to go online to figure out a possible diagnosis (Fox and Duggan 2013). This study seeks to enhance the demographic and cultural profiles of online diagnosers using the tools of cognitive anthropology and social network analysis to compose a cyberethnography of this growing virtual community. The study’s theoretical orientation will emphasize the interplay between consensus theory and confirmation bias (the tendency for people to confirm what they already believe to be true, even in the face of evidence to the contrary), with particular attention to how each potentially informs the development of cyberchondria.

Do Black and Brown Lives Matter to Anthropology?: Race, Bodies, and Context (3-1225)

Thursday, November 30 – 4:15-6:00pm in Omni, Hampton

– Executive Roundtable Session –

John Jackson (Chair/Roundtable Introducer) – University of Pennsylvania

Norma Mendoza-Denton – University of California, Los Angeles

Aimee Cox – Yale University

Jonathan Rosa – Stanford University

Vanessa Diaz (Organizer) – Dartmouth College

In line with the 2017 AAA theme, “Anthropology matters!,” which invokes #BlackLivesMatter and the movements of other racialized and stigmatized groups, this roundtable offers a space for anthropologists to respond to how anthropology interacts with, strengthens, and/or stifles the movement(s) of people of color and other marginalized populations. More specifically, this roundtable will center around the question anthropologist John Jackson posed in his comments for the roundtable “Ferguson and Beyond” at the AAA 2015 annual meeting: Do Black lives matter to anthropology?

In the time since this provocative question was posed, the lives of Black folks, and people of color more broadly, have remained under attack by U.S. political, legal, and criminal justice systems. As this year’s call for papers asks us to bring panels to the table “that involve investigation, translation, influence, and action” to various parties, including “as an association (AAA and all the sections),” this roundtable offers the opportunity to address if and how anthropology has addressed Jackson’s question. This roundtable will explore various anthropological perspectives on race, the body, and the reality of white supremacy and racial hierarchies that are alive and well within anthropology, academia, and the U.S. on a national level.

By exploring such topics as racialized and gendered labor in the academy, racial profiling in various social realms, raciolinguistic politics, and how popular U.S. culture relates to and perpetuates racial hierarchies, we come together as anthropologists of color to insist that issues of race and racialization be at the forefront of contemporary anthropological inquiry. The panelists will identify the ways in which their research addresses contemporary struggles with inequality, discrimination, and other topics that should matter to anthropology, while at the same time offering examples of the ways in which anthropology as a discipline and AAA as an organization (and its members) can show that these struggles, and the discipline’s own relationship to colonialism and white supremacy do, in fact, matter to anthropology.

Book Release: “The Recovery Revolution: The Battle Over Addition Treatment in the United States”

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This week on the blog we are highlighting a new book by Claire Clark from the Columbia University Press entitled The Recovery Revolution: The Battle Over Addiction Treatment in the United States (2017). As the opioid crisis in the United States is continuing to make headlines, Clare traces the history of addition treatment and embeds developments in the social, political, and cultural moments from which they arose.

via Columbia University Press website

“In the 1960s, as illegal drug use grew from a fringe issue to a pervasive public concern, a new industry arose to treat the addiction epidemic. Over the next five decades, the industry’s leaders promised to rehabilitate the casualties of the drug culture even as incarceration rates for drug-related offenses climbed. In this history of addiction treatment, Claire D. Clark traces the political shift from the radical communitarianism of the 1960s to the conservatism of the Reagan era, uncovering the forgotten origins of today’s recovery movement.

Based on extensive interviews with drug-rehabilitation professionals and archival research, The Recovery Revolution locates the history of treatment activists’ influence on the development of American drug policy. Synanon, a controversial drug-treatment program launched in California in 1958, emphasized a community-based approach to rehabilitation. Its associates helped develop the therapeutic community (TC) model, which encouraged peer confrontation as a path to recovery. As TC treatment pioneers made mutual aid profitable, the model attracted powerful supporters and spread rapidly throughout the country. The TC approach was supported as part of the Nixon administration’s “law-and-order” policies, favored in the Reagan administration’s antidrug campaigns, and remained relevant amid the turbulent drug policies of the late twentieth and early twenty-first centuries. While many contemporary critics characterize American drug policy as simply the expression of moralizing conservatism or a mask for racial oppression, Clark recounts the complicated legacy of the “ex-addict” activists who turned drug treatment into both a product and a political symbol that promoted the impossible dream of a drug-free America.”

Claire Clark is an Assistant Professor of Behavioral Science at the University of Kentucky. She is secondarily appointed in the Department of History and associated with the Program for Bioethics. Clark further directs a National Endowment for the Humanities Summer Institute on Addition in American History. She graduated from Vassar College and was dual trained as an historian of medicine (PhD) and behavioral scientist (MPH) at Emory University.

For more information, visit the Columbia University Press website, available here.

Conference: American Society for Bioethics and the Humanities, Oct 19-22, 2017

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This week we are highlighting four sessions from the upcoming American Society for Bioethics and the Humanities Annual Conference in Kansas City, MO from October 19-22, 2017. The sessions are categorized under Religion/Culture/Social Sciences, and include topics interesting to scholars in multiple disciplines. For the full conference schedule, visit the ASBH 2017 meeting website here.

Panel Session: China’s Forced Organ Harvesting: A Central Test of Our Time

Thursday, Oct 19 – 1:30-2:30pm

With David Li, Yiyang Xia, and Grace Yin

A decade of research by international investigators has concluded that the Chinese party-state is systematically killing prisoners of conscience on demand to supply its vast organ transplant industry. In June 2016, the U.S. House of Representatives unanimously passed H.Res. 343, condemning the harvesting of organs from Falun Gong adherents and other prisoners of conscience in China.

Researchers examined hundreds of transplant hospitals in China and analyzed data about their capabilities, capacity, personnel strength, and potential patient groups from medical journals, media reports, official statements, web archives, and government policies and funds.

The research estimates that China now performs between 60,000 and 100,000 transplants per year–more than any other country in the world. Even based on government-imposed minimum requirements, China could have performed more than one million total transplants since 2000.

The official organ sources–death row prisoners and voluntary donors–account for only a small fraction of the total volume. The victims are primarily Falun Gong meditators killed through organ extraction outside of judicial process as part of the Communist Party’s campaign to eradicate the group.

The issue of forced organ harvesting presents an opportunity and an obligation to bring medical and academic institutions to the center of bioethics. Presenters will articulate with the audience concrete actions to prevent the complicity of American institutions and individuals, including providing training, equipment, recognition, collaboration, and organ tourism to Chinese institutions that are participating in this crime. Comprehension of the issue helps institutions and individuals make informed choices and uphold social responsibility.

Panel Session: Pathways to Convergence: Sharing a Process that Aimed to Examine the Diverse Perspectives of Catholics on Advance Care Planning and Palliative Care in the United States

Thursday, Oct 19 – 2:45-3:45pm

With Robert Barnet MA MD, John Carney MEd, Matthew Pjecha MSPP, and Carol Taylor MSN PhD RN

Pew Charitable Trusts recently funded a project to examine views among Catholics in the U.S. regarding end-of-life, palliative care and advance care planning. Center for Practical Bioethics (CPB) served as coordinator for the project. A six-member steering group representing ecclesial, Catholic Health, and ethical interests, along with CPB (a secular organization) invited three groups of eight Catholics from different disciplines and perspectives to capture conservative and progressive themes within American society and among practice settings. Roles and responsibilities within those realms were prominently featured in deliberations with goal of clarifying areas of divergence, convergence and possible paths forward. The groups examined: – Social responsibility derived from tradition (how the Church presents itself and speaks in the public square and what informs this presence) – Covenant and contract (roles of free and informed consent in advance care planning and decision-making between patients and providers) – Shared decision making (Church teaching that informs specific decisions faced in goals of care conversations and interdisciplinary care planning for palliative care patients)Identified as Pathways to Convergence the groups aspired to identify common values and principles and report on the results following a convening. Presenters will explore how ethicists can use the processes, methods and findings of this group when workings with patients for whom faith tradition may play an important role and among providers, and others who share different perspectives on end of life to facilitate optimal advance care planning and palliative care.

Paper Session: Religion, Culture, and Social Sciences Paper Session 1

Thursday, Oct 19 – 4:00-5:00pm

Creating Compliance: Using Games to Engage Patients in Medical Management 

by Kristel Clayville

This presentation offers a method for increasing compliance among transplant patients. The recommendations presented are from non-medical clinical observation from a chaplain who deals with the day-to-day coping skills of transplant patients. The case studied focuses on the emotional aspects of compliance, and the attendant interpretation and recommendations focus on the social, emotional, and spiritual aspects of dealing with the existential difficulties of undergoing a solid organ transplant. Ultimately, the recommendations are for presenting medical compliance as a game that patients play rather than as a set of medical practices that sustain life. Thinking in terms of games not only helps the patient’s motivation, but it also offers the family and support network a language with which to engage the patient and help with the practices of compliance.

The Ethics of Influence: Celebrity Physicians and Social Media 

by Patrick Herron

Growth of social media has not only changed how individuals interact socially, but in how we engage with professionals too. Recognition of a physician’s social media “influence” is based on her/his ability to affect other people’s thinking. The greater the influence, the more appeal that individual has to companies or other individuals who might want to promote an idea or sell a product. Celebrity actors/athletes are often seen as prime influencers with regards to advertising campaigns, (i.e. “Got milk?” and “Milk: it does a body good”) to increase sales.

Celebrity physicians such as Dr. Mehmet Oz have used influence to promote health products and interventions, which raised considerable debate as to whether there were lapses in ethical and professional judgment. Not all physicians will have the platform of a Dr. Oz, but social media has created ample opportunities for many lesser known physicians and trainees to leverage their own professional expertise and growing social media prominence to become influencers. Such financial partnerships raise questions about conflicts of interest, professionalism and potential violations of an ethical duty of care.

The impact of social media on consumer healthcare decision making along with the dependence by consumers on their friends and families for healthcare product reviews (often shared via social media) has dramatically changed marketing. Consumer confidence and increased reliance on the opinions of physicians they follow via social media accounts can have a detrimental affect on the patient-physician relationship that consumers have with their actual health care provider.

Make Aging Great Again: Imagining a YUGE Lifespan

by Leah Fowler

The new era of longevity research seeks extended healthy life, with hoped-for interventions that would slow the aging process so that one year of clock time is matched by less than one year of biological time. Infirmities of old age would compress into a short period at the end of life—thereby increasing the ‘health span’. The benefit: living long and living well. Embedded in longevity discourse is humanity’s oldest and most pervasive wish: defying death. Slowing the process of aging, it is hoped, will lead to treatments to reverse it.

Social arenas and actors at the center of longevity are grounded in big data, big investment, and a breathtaking sense that “the person who is born today will live to 200.” A prominent longevity researcher says, “It is ageist and morally repugnant to not treat aging as a disease that needs a cure.” These expectations, fueled by aging populations, are rooted in narratives that render the possible futures of long, healthy lives as inevitable and real today. Bringing the future into the present—conveying hope and fear as moral vectors— introduces an imperative to pursue the extension of the life- and health spans as a matter of course, and devalues alternatives as non-progressive or even immoral. This paper presents a qualitative analysis of longevity stakeholders discussing the moral imperative to extend human life and free of the ravages of aging. Their narratives illustrate future social imaginaries that are central to the movement and spur us to take action today.

Paper Session: Religion, Culture, and Social Sciences Paper Session 2

Sunday, Oct 22 – 9:15-10:45am

Religion Matters: A Critical Response to Daniel Weinstock’s Appraisal of Conscientious Refusal

by Nicholas Brown

Daniel Weinstock has recently argued that it is necessary to make a distinction between freedom of conscience and freedom of religion when evaluating questions of conscientious refusal. Weinstock holds a right to refusal to care on the grounds of conscience enjoys a more privileged status than refusals made on religious convictions inasmuch as he judges religious refusals to be non-essential to the flourishing of a robust democratic ethos, and because he finds religious objections to lack a sufficient epistemological and ethical rationality that is publicly “reasonable.” The purpose of this paper is to offer a response that is both critical and sympathetic. Toward that end my argument is as follows: First, I will critically evaluate the underlying epistemological assumptions undergirding Weinstock’s privileging of conscientious over religious refusals to care. More specifically I will draw upon the philosophical work of Nancey Murphy and Michael Polyani to show not only why Weinstock’s account of reasonability is inadequate, but also why a religious ratio is just as publicly accessible as a non-confessional one. Next, I will draw upon Romand Cole’s political theory to demonstrate why religious perspectives are not only vital to the flourishing of a democratic ethos, but are so precisely because they help inculcate the critical mode of conscience that Weinstock endorses. Finally, I conclude by suggesting that Lisa Sowle Cahill’s articulation of theology as a participatory mode of discourse offers a more compelling basis upon which to adjudicate the ethical tensions entailed in conscientious refusal that Weinstock rightly identifies.

The Church Amendment Reconsidered: Lost Assumptions of the First Federal Healthcare Conscience Clause

by Ronit Stahl

In the wake of Roe v. Wade (1973), Congress passed the Church Amendment, which allows doctors, nurses, and hospitals to refuse to perform abortions or sterilizations on the basis of religious or moral convictions. As the foundation of subsequent federal and state conscience clauses, the Church Amendment operates as a powerful tool that enables healthcare providers and institutions to opt out of providing—and thereby restrict access to—contested medical interventions, typically in reproductive, end-of-life, and LGBT healthcare. Yet the legislative history of the Church Amendment offers a more complicated and nuanced set of assumptions about the intended effects and implementation of the nation’s first healthcare conscience clause. This talk will discuss the presumptions about access, disclosure, scope, and impact embedded in the Church Amendment and consider the value of a countervailing narrative about conscience clauses in an era of expanding conscience legislation.

Hinduism and Bioethics: Some Basics and Some Applications

by Deepak Sarma

With an increasing number of patients with Hindu heritage and background, it is imperative that the bioethics community begins better versed in germane issues pertinent to Hindus. What, for example, is the Hindu position on brain death and organ transplantation? What sorts of neurogenomic treatments and interventions are possible given the Hindu view of the self? How do these perspectives agree, or conflict with prevailing discourses in bioethics? Since Hindus makeup only a small population of patients they are further from the ‘center’ and from most patients. Healthcare providers, in this connection, will need to expand their knowledge of those whose beliefs are not at the center.

SPA Interview with Dr. Rebecca Lester

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This week on the blog we are featuring a partial summary of an interview with Dr. Rebecca Lester, conducted by Ellen Kozelka, as part of the Society for Psychological Anthropology “Voices of Experience” series. In this audio conversation, available in full here, Dr. Lester discusses her newest book project, Famished: Eating Disorders in the Era of Managed Care, focusing on the conditions and experience of eating disorders treatment in the United States. Also discussed in the interview is Dr. Lester’s research interests, reflections on her personal experience experience with an eating disorder, and the linking of anthropology to advocacy. Dr. Lester’s book is not yet for sale.

The SPA “Voices of Experience” series is a venue to showcase the range of work that psychological anthropologists engage in, and to give listeners, virtually attending the live events, the opportunity to ask prominent scholars in the field about their work.

The interview begins with a reading of the book’s preface by Dr. Lester herself. The recitation narrates the experience of an insertion of a nasogastric (NG) tube and subsequent first “feeding” of an 11-year-old girl with anorexia. Capturing the anxiety and fear of being forcibly held down for the insertion of the NG tube, and yet still being terrified of eating, Dr. Lester describes the instructions given by the doctor before inserting the NG tube. “We are going to put it in. You can either cooperate with me here, or we can take you to a seclusion room and put you in restrains and do it there. It’s your choice,” the doctor says to the girl.

The process of having an NG tube placed is extremely uncomfortable. Feeling disconnected from the world around her, exhausted from the painful NG tube ordeal, and distraught from watching “so many calories” being pumped into her body while she is unable to do anything about it, the young girl is then further mentally assaulted by another patient nearby asking her questions about her new feeding tube.

“Is [anorexia] the thing where you’re scared of getting fat so you starve yourself and you get real skinny? Hell, I wish I could have anorexia for a day,” the older patient states while laughing and grabbing at her own stomach fat. The young girl is then left to make sense of her situation while listening to the woman and another patient chatting about how much they wish they had the willpower to starve themselves as the holiday season approached.

This preface sets the tone for what it is like to be a patient in an eating disorders clinic. This reading then transitions the conversation into the interview between Dr. Lester and Ellen Kozelka.

Ellen Kozelka: What is the managed care system as it relates to eating disorders treatment, and why is it so important to understand its moral dimensions?

Dr. Lester: Managed care operates as a moral system in our society. So in terms of eating disorders, we are in a situation where our healthcare system is really predicated on a certain kind of understanding of what health is and what a person is. This is foundationally oriented to the splitting off of behavioral health and medical care.

Managed care plans have a pot of money that goes to medical care, and another pot of money is set aside for mental health, behavioral, or psychiatric care, depending on how insurance companies classify it. What’s challenging in terms of eating disorders is that they are conditions that bridge both of those domains. Certainly there are medical complications to other things, such as addictions, but we find in eating disorders this bridging of the medical and of mental health in terms of the symptomatology.

Trying to get an integrated treatment approach for eating disorders is really difficult. Clinicians are left to try and piece together care, but getting that care reimbursed is extremely difficult. Often times managed care companies will pay for the acute medical issues, such as an inpatient hospitalization because of a cardiac incident, but you then cannot also get mental health care at the same time. Or you can go to an outpatient clinic for the psychiatric concerns, but you then are not able to also be treated for the physical complication that might be going on too. Thus it is very difficult to provide a full spectrum of care to someone in a way that is actually going to treat the problem.

Kozelka: The foundation of the system in the US is that physical medical care and mental health care are two separate things, which based on this idea of what health is and what the person is. So would that make managed care in the US a type of cultural system?

Dr. Lester: Absolutely. One of the things I’ve been interested in is what kind of philosophies of the person are embedded in our healthcare system and how is that structuring or impacting the way that clinicians are perceiving what’s going on with clients, what the problem is, or how to best intervene with them. It’s a whole epistemological and world view about humans and what motivates humans, and what the appropriate end goal of that behavior should be.

Kozelka: In your book you provide an overarching definition of care. Care “orchestrates cognitive and sensory attunement, practical agency, and affective imagination into a disposition to the ‘other’ which comes to organize attention, doing, and feeling in locally meaningful ways.” This definition of care combines two previously separate conceptual definitions of care as practical or political action, and care as affective concern. How do you see this combination linking to your understanding of care in relation to power?

Dr. Lester: Something that many of us as psychological anthropologists struggle to do in our work is try to illuminate the ways that these are not different domains. When we talk about political or practical action, and we talk about affective experience or subjective experience, they are not separate domains. We can separate them ideologically, but in terms of the way people live their lives, the domains are intertwined.

Part of what I’ve been interested in is how these structures of power operate across multiple levels of analysis at once. Care in all of the senses of the definition above, is a way of constituting not only an object of concern, but who the subject of care is, and how that person is constituted as a moral agent, or not, in a given circumstance. We have to look at how political and practical components of care are connecting and interacting with the affective dimensions and the subjective experience of care. That is where you see psychological anthropology coming in and trying to theorize about what these connections are in a way that’s rigorous and ethnographically grounded.

Kozelka: How do these moral dimensions of care, in terms of whether the or not the individual is considered to be a “good patient,” relate to the actions that these managed care systems either take or don’t take?

Dr. Lester: There are different ways of thinking about a patient, such as framing the patient as a moral actor, or discussing the patient in relation to her own quest for health, whatever that is. In the case of eating disorders, it can become a situation where it almost does not matter what the patient does. It does matter, but the same action can be interpreted in a variety of ways depending on how you are thinking about that actor as a moral agent or not.

Compliance and non-compliance are big concerns in all of healthcare, certainly in behavioral health, but particularly in the field of eating disorders where patients are historically thought to be non-compliant, resistant, or really difficult to work with. Managed care companies have concerns about patient complying with the treatment recommendations. What I saw again and again is that it almost did not matter what the patient did. There would be times where they were complying, following the regulations and meal plans, and doing what they were supposed to do. But the insurance companies were skeptical of the motivations for this behavior, so that even when clients were complying with treatment, their compliance was sometimes read as manipulation. That’s just an example of how these moral dimensions, or how you constitute the recipient of care as a moral agent or not, affects the way that care is delivered, almost regardless of what the person is actually doing.

Kozelka: In this system were patients are constantly being scrutinized, how do you think these factors affect their experience of treatment?

Dr. Lester: It’s horrible. It would be miserable for any of us to be in that circumstance. This is particularly challenging for these patients because a lot of the dynamics experienced during the course of treatment itself are the exact same issues that they are already struggling with. These are questions like, “Are you worthy of care,” “Are you worthy of attention,” “Are you worthy of time,” and “Do you matter?” These questions are really at the core of eating disorders for a lot of people.

Dr. Rebecca Lester, via Washington University in St. Louis Dept of Anthropology website

Patients are being told they should not always be monitoring or surveying themselves, yet at the same time, because of the kinds of things that the insurance companies care about in order to make their decisions, patients are being constantly monitored and evaluated. There is a constant, pervasive insecurity that pervades that clinic where you do not know from one day to the next if someone is going to be deemed “sick enough” to still need care, “too sick” to remain there, “invested enough” in her recovery, or “invested too much in her recovery” and thus deemed as manipulative. It is this constant uncertainty and people trying to make themselves into appropriate patients just so that they can get care.

This does not address the underlying issues that are going on. So this scrutiny affects them a lot, especially when clients want treatment, doctors say they need treatment, but insurance companies say “No.” There are even discussions among the clinicians, expressing that “if only she were cutting, because then we could get her treatments.”

Further, the patients may not even be able to deal with some of the underlying things that possibly got them to the eating disorder because they are so busy dealing with the feelings around not being worthy of getting treatment. If the insurance companies deny them, they cannot get treatment. There is a case I discuss in the book of a 14 year-old teenager who was struggling with anorexia in the clinic. Her weight had gone up a bit during the two or three weeks she was admitted and making progress. But then her insurance ran out, and the family did not have the financial resources to afford the $1,200 a day price tag. Their only option was to get the teenager into a research study going on at a local university where a randomly assigned treatment group would get free therapy. The problem was that she had gained too much weight for the regulations of the study, forcing the clinic staff to put her on a diet at the treatment center in order to get her down in weight enough so that she could get free treatment. That was the only option besides merely discharging her with no support.

Kozelka: What do you think the study of self brings to anthropology as a whole?

Dr. Lester: It’s absolutely critical. The self as a general category is about why people do what they do. We cannot understand why, or effectively theorize about why, unless we are willing to engage with questions about parts of experience that we cannot directly observe. We have to be open and flexible enough to understand different ways that different groups of people comprehend the components of what makes up a person, how to understand motivation, or whatever we want to call why people do things. It is imperative if we, as a field, want to have something useful to say.

The interview with Dr. Lester continues, and concludes with a question and answer session with listeners who were virtually tuned in during the live recording of the interview. The full audio interview recording is available here.

Dr. Rebecca Lester is an Associate Professor of Sociocultural Anthropology at Washington University in St. Louis, and a practicing clinical social worker. Her interests include how individuals experience existential distress, and how this distress manifests as psychiatric symptoms, religious angst, somatic pain, and other culturally informed bodily conditions.  Specifically, she considers how bodily practices deemed “deviant,” “extreme,” or “pathological” – and local responses to such practices – make visible competing cultural logics of acceptable moral personhood. Along with her many publications and previous book, Jesus in our Wombs: Embodying Modernity in a Mexican Convent (2005) from the University of California Press, Dr. Lester is also the founder, Executive Director, and a psychotherapist of the non-profit Foundation for Applied Psychiatric Anthropology.

Ellen Kozelka is a graduate student at University of California, San Diego.

In the News: “Life After the Storm” and the Psychological Impacts of Hurricane Survivorship

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In our In the News post this week, we are discussing the lasting psychological impacts people face after surviving a large natural disaster event, such as the string of recent hurricanes battering the United States and the Caribbean. Building from a recent New York Times article by Benedict Carey entitled Life After the Storm: Children Who Survived Katrina Offer Lessons, available here, this post discusses how lasting damage from natural disasters can be much more than physical and economic.

September 2017. Benedict begins his article by sharing the story of Craig Jones, now 22 years old, who was in fifth grade when Hurricane Katrina in 2005 devastated his neighborhood of Pigeon Town in New Orleans. After spending years on the move, living between hotel rooms, Jones returned to New Orleans in his late teens. He remembers that “home” was not the same place he had left, and his “homesickness” became troubling anxiety and seemingly random panic attacks.

Lacey Lawrence, 22, at work in New Orleans. She escaped the floods of Hurricane Katrina on an air mattress. Now she teaches children coping skills. Credit: Annie Flanagan for The New York Times

Another survivor, Lacey Lawrence, now 22, escaped the water of Hurricane Katrina on an air mattress. Lawrence recalls the experience of seeing police officers pushing away floating bodies with oars, missing and uncle who presumably drowned, and wondering where a young cousin disappeared to for several hours. Later, at a new school, Lawrence was ill-equipped to deal with her experience. “I was getting into fights; real fights, violent ones. That was something I never did before, ever. But you lose everything and you don’t know how to deal with it – no one prepares you for that” (Benedict 2017).

Studying the psychological impacts from previous hurricanes may offer hints of what may be to come for those who have survived Hurricane Harvey, Irma, and most recently, Maria. Mental health providers and social scientists are acutely aware of the unpredictable traumatic consequences which can emanate from surviving natural disasters. Yet the impacts of surviving a hurricane may be unique.

Benedict (2017) writes, “Unlike an earthquake or a fire, flooding from a storm like Katrina or Harvey leaves many houses and buildings still physically standing but uninhabitable, simultaneously familiar and strange, like a loved one sinking into dementia.”

In a series of publications from the Stress & Development Laboratory at the University of Washington, the research teams concluded that the prevalence of “serious emotional disturbance” (SED) in young adults after exposure to Hurricane Katrina remained significantly elevated several years after their experience of the storm (McLaughlin et al. 2010). The prevalence of SED among young adults who experienced Hurricane Katrina was considerably greater than the pre-hurricane prevalence. According to a 2010 study, approximately 8% of youths were estimated to have SED that is directly attributable to their experience of the hurricane. Further, the majority of adults who developed posttraumatic stress disorder (PTSD) after Katrina, including delayed onset PTSD, did not recover within 18-27 months (McLaughlin et al. 2011).

Prior to Hurricane Katrina, the majority of the literature focuses on the prevalence of and risk for the development of mental health problems following a storm or hurricane. For example, a study of the presence of PTSD symptoms after Hurricane Mitch in 1998 in a low-income area of Nicaragua found that the occurrence of PTSD in the areas with the least damage was 4.5%, while the most damaged areas was 9% (Davis, Tarcza, and Munson 2009). Variables such as low social support, prior exposure to traumas, and poor health status were found to be universally predictive of psychopathology symptoms (Davis, Tarcza, and Munson 2009).

A 2005 study by Fried, Domino, and Shadle looked at the use of mental health services after Hurricane Floyd in 1999 and found that visits to psychologists, licensed clinical social workers, and physicians for mental health reasons were higher in affected areas after the hurricane. However, inpatient admissions and the money spent on anti-anxiety medications decreased, indicating that there were likely problems with service delivery for those that did seek help (Davis, Tarcza, and Munson 2009).

Flooded homes are shown near Lake Houston on Aug. 30 after Hurricane Harvey hit the Houston area.
Photo from NPR: Win McNamee/Getty Images

In the aftermath of Hurricane Harvey, Texas officials were “scrambling to coordinate mental health support” and the state’s psychology board issued temporary practice licenses for out-of-state therapists (Benedict 2017).

In a recent CNN article, Jesse Cougle, an associate professor of psychology at Florida State University, said that the people who stared and witnessed the destruction of Hurricane Irma will likely experience worse mental health problems than those who evacuated (Scutti 2017).

Chief of emergency mental health and traumatic stress services branch at the Substance Abuse and Mental Health Services Administration, Capt. Maryann Robinson, stated that “when you go home and now you are actually faced with what has happened — the devastation that has occurred in your home — it really does re-traumatize the individual” (Scutti 2017).

Overall, anticipating the consequences for major hurricanes should encompass more than disaster preparedness schemes and evacuations routes. Multi-state collaborations

Katrina’s young survivors, now older and reflecting on their experiences, say that “overcoming the mental strain of displacement is like escaping the rising water itself – a matter of finding something to hold onto, one safe place or reliable person, each time you move” (Benedict 2017).

References Cited:

Davis T.E., Tarcza E.V., Munson M.S. (2009) The Psychological Impact of Hurricanes and Storms on Adults. In: Cherry K. (eds) Lifespan Perspectives on Natural Disasters. Springer, New York, NY. Pp. 97-112. (Available here: http://stressdevelopmentlab.org/publications)

McLaughlin, K. A., Berglund, P., Gruber, M. J., Kessler, R. C., Sampson, N. A., & Zaslavsky, A. M. (2011). Recovery from PTSD following Hurricane Katrina. Depression and anxiety, 28(6):439-446. (Available here: http://stressdevelopmentlab.org/publications)

McLaughlin, K. A., Fairbank, J. A., Gruber, M. J., Jones, R. T., Osofsky, J. D., Pfefferbaum, B., … & Kessler, R. C. (2010). Trends in serious emotional disturbance among youths exposed to Hurricane Katrina. Journal of the American Academy of Child & Adolescent Psychiatry, 49(10):990-1000. (Available here: http://stressdevelopmentlab.org/publications)

Carey, Benedict. (September 8, 2017) Life After the Storm: Children Who Survived Katrina Offer Lessons. The New York Times. Available here: https://www.nytimes.com/2017/09/08/health/katrina-harvey-children.html?rref=collection%2Fsectioncollection%2Fhealth&_r=0

Scutti, Susan. (September 20, 2017) Resilience, suffering and silver liniings after a disaster. CNN. Available here: http://www.cnn.com/2017/09/19/health/psychological-aftermath-hurricanes-harvey-irma/index.html

Further Reading:

Davis III, Thompson, Amie Grills-Taquechel, and Thomas Ollendick. (2010) The Psychological Impact From Hurricane Katrina: Effects of Displacement and Trauma Exposure on University Students. Behav Ther 41(3):340-349.

Domonoske, Camila. (September 26, 2017) Long After The Hurricanes Have Passes, Hard Work – And Hazards – Remain. NPR. Available here: http://www.npr.org/sections/thetwo-way/2017/09/26/552063244/long-after-the-hurricanes-have-passed-hard-work-and-hazards-remain

Fothergill, Alice, and Lori Peek (2015) Children of Katrina. Austin: University of Texas Press. Available here https://utpress.utexas.edu/books/fothergill-peek-children-of-katrina

McLaughlin, K.A., Fairbanks, J.A., Gruber, M., Jones, R.T., Pfefferbaum, B., Sampson, N., & Kessler, R.C. (2009). Serious emotional disturbance among youth exposed to Hurricane Katrina two years post-disaster. Journal of the American Academy of Child and Adolescent Psychiatry, 48:1069-1078. (Available here: http://stressdevelopmentlab.org/publications)

Shear, M. K., McLaughlin, K. A., Ghesquiere, A., Gruber, M. J., Sampson, N. A., & Kessler, R. C. (2011). Complicated grief associated with Hurricane Katrina. Depression and Anxiety, 28(8):648-657. (Available here: http://stressdevelopmentlab.org/publications)

Book Review: “A Surgeon in the Village”

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This week we are highlighting a book review written by Veronica Tomasic originally published in MedHum Daily Dose, a blog for the intersections of medicine and humanities, available here. The book is entitled A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (2017) by Tony Bartelme, published by Beacon Press.

A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (Beacon Press, 2017) is the story of American neurosurgeon Dr. Dilan Ellegala’s efforts to provide medical aid in Tanzania. It was written by Tony Bartelme, an American reporter for Charleston, South Carolina’s Post and Courier; Bartelme is a three time Pulitzer prize finalist, including for the series that formed the basis for this book. The Post and Courier’s executive editor relayed a story to Bartelme about a “crazy brain surgeon who opened a guy’s head with a wire saw in Africa”; Bartelme’s interest was piqued and thus began the story that he narrates here (269).

A Surgeon in the Village is a bildungsroman of sorts. It describes the beginning of Ellegala’s career as a neurosurgeon and his personal journey toward finding meaning in his work. It is also about his ideas for how foreign medical aid should be delivered, and the growth of an organization, Madaktari Africa (Madaktari means doctors in Swahili), that he formed as a result of his ideas.

We first meet Ellegala when he has just completed his neurosurgery training in the US. He is burned out after years of grueling residency and fellowship programs. He travels to Tanzania for six months, volunteering to perform brain surgery at a small, remote hospital. Ellegala is determined to spend as much time as possible vacationing while there. But his plan changes after he starts to attend daily morning meetings where the visiting foreign students and MDs, and local medical personnel gather to discuss their cases. Ellegala observes that the foreign students sit in a privileged position at the front of the room, while the local personnel — such as assistant medical officers (or “AMOs,” who have paramedic plus a few years’ level of training) — stand at the back of the room. This disturbs his sense of propriety — in the US, medical students typically stand or sit behind attendings and residents. He insists that the students and local personnel trade places, a shift that becomes a central organizing metaphor for the book. The change symbolizes the degree of responsibility Ellegala believes the local staff should have for the care they provide, and the respect he feels they should be shown by foreign visitors.

Galvanized, Ellegala starts to rethink traditional models for providing aid in Tanzania, a country with limited resources to train and keep its own MDs. Rather than encourage foreign MDs to travel to a hospital, perform surgeries for a brief period of time and then leave, Ellegala realizes that it makes more sense to train local AMOs to perform neurosurgical procedures. If they can take over, he reasons, a hospital will transition from being dependent on outside help to being self-sustaining. Ellegala notices an AMO who has a surgeon’s confidence about him, Emmanuel Mayyega, and he trains him to diagnose and perform operations for a number of conditions, such as intracranial tumors, head trauma, and hydrocephalus. Eventually, Mayyega trains others. And thus began the “train forward” movement in Tanzania.

Bartelme weaves through his account the challenges Ellegala faces in his career as he devotes time, money, and considerable energy to Madaktari Africa. He also describes some of the ethical issues that are raised by the “train forward” practice. For example, should we accept that people will die in countries where there are not enough traditionally-trained MD surgeons to perform surgeries? Or should surgeries in these countries be performed by people with limited training and supervision because they can save lives? And what about the liability exposure for people trained under such circumstances? One area where the book could have been strengthened would have been to devote a chapter to the history of aid organizations and their varied philosophies. While mention of organizations such as Smile Train, or Paul Farmer’s Partners in Health, among others, are interspersed throughout the book, it was never clear to me whether Ellegala was the first person to conceptualize “train forward,” or whether such a practice had already been established in other countries.

Altogether, A Surgeon in the Village is a warmly engaging account of one doctor’s efforts to make a difference in a part of the world that has limited medical resources, and the personal rewards his efforts afforded him. It would be useful for medical providers and students to read, as well as anyone interested in how best to provide aid to other countries.

Veronica Tomasic (PhD, JD) practices community law in the New Haven, CT, area. She is a scholar of literature, painting, psychoanalytic theory, and end-of-life issues.

For more information about the book, visit the Beacon Press website, here.

University of Washington Today: Q and A with Janelle Taylor

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Yesterday we highlighted Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry entitled Engaging with Dementia: Moral Experiments in Art and Friendship, available here. In this post, we follow up with a link to a recent Question & Answer session with Taylor by Kim Eckart, posted on the University of Washington Today website. Included with the Q & A interview is a video with Taylor entitled “How friendships evolve when one person has dementia.” In the video, Taylor discusses her research and the implications of the moral challenges taken on by people who have friends with dementia. Visit the UW Today post here.

Article Highlight: Vol. 41, Issue 2, “Engaging with Dementia: Moral Experiments in Art and Friendship”

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This week, we are featuring an Article Highlight written by Monica Windholtz, an Integrated Graduate Studies student in the Anthropology and Bioethics departments at Case Western Reserve University. Monica highlights Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry (Vol. 41, Iss. 2), entitled Engaging with Dementia: Moral Experiments in Art and Friendship. The article examines activities and social circumstances used to involve people with dementia in the world. Taylor depicts the steps involved in creating ‘moral experiments’ that plant patients with dementia in life. Through interviews with caregivers of people with dementia, Taylor explores the role of art and community in engaging those with dementia.

In this article, Taylor analyzes the experiences of individuals with dementia as relayed through the narratives of their caregivers. The article begins with the concept of media portrayals of dementia. Dementia is typically not represented well in the media, with stories devoid of “either subtlety or compassion” (285). In 2014, Julianne Moore received critical acclaim and an Academy Award for her role as the titular character in the film Still Alice, based on a book. The book and movie both chronicle the decline of Alice Howland, a brilliant scientist, as she suffers from early-onset Alzheimer’s Disease. While her husband and two oldest children are unable to confront the changes in Alice and focus only on treatment, her daughter Lydia attempts to understand her mother and engage with Alice’s new world. The article highlights Lydia’s artistic interactions with her mother to introduce the concept of the positive impacts of art and relationships to those with dementia.

While there is currently no effective cure for dementia, caregivers attempt to guide those with dementia to live full lives. The arts have especially served as a way to engage people with dementia, using programs in “storytelling, poetry, painting, dance, theater, [and songwriting]” (287). These programs engage and enrich the lives of individuals suffering with dementia. Artistic forms of expression help to imbue the lives of dementia patients with meaning. In Seattle, such programs to connect with dementia patients have been increasing.

Taylor labels these programs as “moral experiments,” following the work of Cheryl Mattingly where experiments are created by people trying to do the right thing (289). By attempting to enrich the lives of those with dementia, artistic programs are exploring new ways to bring meaning to their daily experiences.

Through an analysis of her interviews, Taylor recounts the experiences of those who have served as caregivers for family members or friends with dementia. In one case, a woman named Janet offered to help engage her friend’s husband, who was suffering with dementia. Their interactions formed a strong friendship between Janet and the husband, enabling him to still feel a sense of community, even as a patient with dementia.

Taylor found that caregivers and friends of those with dementia often see themselves as modeling or teaching proper behaviors to the rest of society, which may exhibit apprehension or discomfort when engaging with dementia patients. Since these anxious attitudes are common, caregivers may have interventions with their social groups or instruct others in how to interact with the individual with dementia. According to Taylor, people should attempt to interact with dementia patients, as they still understand the social environment, even if the context is not clear. Thus it is important for communities and social groups to still recognize the person with dementia in social settings.

Another striking example of people coming together was with the caregivers of Jacqueline, an immigrant woman in Seattle. Jacqueline had relied on the care and help of her mother in the home for many years, but soon after her mother’s death Jacqueline developed dementia. Those that knew Jacqueline were drawn into greater involvement in her life because of her dementia, and helped with the tasks her mother had otherwise taken care of. The group even created a calendar to organize their efforts to aid her.

The Still Alice novel uses the motif of a butterfly to reflect the theme of transformation while still being the same being. As discussed by Taylor, one caregiver of a dementia patient referred to the group that sought to improve the patient’s life as their ‘cocoon.’ The article reflects on the prominent transformations that patients with dementia undergo, and how cocoons and butterflies can both serve as symbols for the moral communities that protect and engage the patients.

In conclusion, Taylor reflects how Still Alice shows that it is not only science and medicine that can improve the lives of those with dementia. Engaging dementia patients through art and the community can help to improve their lives. Finally, there is further room for anthropologists and other researchers to understand and document these other forms of support and improvement.