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

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.

Advertisements

Message from the AAA 2017 Annual Meeting

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

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.

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

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.

SfAA 2017 Conference Feature Part 2: “Experiences and Identity in Long-term and Chronic Illnesses”

This week on the blog we are continuing our feature of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Karen Dyer and Marlaine Gray’s presentations. Part one of this feature is available here.

Karen Dyer (VCU) – Examining Health and Illness after Treatment for Colorectal Cancer: Long-term Healthcare Needs and Quality of Life

From her research, Dyer discusses the attachments formed between people with a history of colorectal cancer and their oncology team, which stems from both a fear of recurrence of illness and an especially strong emotional bond forged through mutual experiencing of a life-threatening disease. Dyer also discusses the consequences of the ambiguity of cancer follow-up care. Questions frequently include, who is the best doctor to see? If multiple care providers are seen by people with a history of colorectal cancer, will tests will be duplicated or even missed? Which emerging symptoms are serious enough to warrant further investigation? This continuing surveillance of a “survivor’s” body encompasses many medical repercussions from the treatment of cancer and reality of recurrence risk, often transforming people into life-long patients.

Dyer interviewed 30 participants in Virginia who had a history of colorectal cancer and were at least five years post-treatment. As this category of people with a history of colorectal cancer increases, there is a growing number of individuals using, and in need of, follow-up care. Yet this need is contrasted against a shortage of oncologists and primary care providers who are able to treat this group of people. Dyer asks, how do we treat and provide adequate long-term care to people for years, possibly for the rest of their lives, in a way that is not going to compromise or strain the oncology clinics? What are the physical, social, and emotional needs of longer-term colorectal cancer “survivors,” and how does their cancer experience impact these needs?

Dyer explains that most participants with a history of colorectal cancer did see an oncology team regularly for a follow-up care. For this group, as with other groups with specific types of cancer histories, the five-year mark is a critical period where individuals get discharged from monitoring and care because the risk of recurrence is statistically very low. Yet from Dyer’s research, a large number of her participants were planning to continue to see their oncology team after they had passed the five-year mark. Most had no formal “survivorship” care plan, and in general, there was not an understanding of what future care would entail.

Many individuals with a history of colorectal cancer continue to see their oncology team because of the intense bond and emotional connection they have developed. Going through a serious life-threatening experience created an attachment and deep sense of friendship. Dyer discusses that the oncology team fills a role of social friendship and support during the cancer experience when many other relationships may change. For Dyer’s participants, the oncology team has seen them in their “worst moments” and guided them through this demanding treatment. This type of connection and support is difficult to abandon. One woman said, “I need my security blanket, and yeah, I guess that’s what Dr. L [her oncologist] is.” This sense of being cared for and understood will be greatly missed. Any kind of care planning needs to take that strength of bond and trust into account.

Ambiguity surrounding cancer follow-up care is also an important dimension of Dyer’s work. Many participants report difficulty several years post-treatment when symptoms or health problems manifest in uncertain ways. Participants report difficulties distinguishing between normal aging processes, potential non-cancer related problems such as diabetes, or potential cancer-related, or cancer treatment-related, effects. Dyer uses fatigue as an example. Many participants spoke about being considerably more fatigued than they usually were. While this fatigue could be part of a normal aging process, it could also signal a variety of diseases or indicate the arrival of a cancer recurrence. Ambiguous symptoms such as fatigue lead to a high stakes, complex decision-making process.

People experiencing these types of indistinct symptoms often express an uncertainty about who they should contact with questions and when. Participants frequently did not want to “bother” their oncologist or be perceived as overreacting. Self-diagnosis and self-assessments of the level of seriousness of these symptoms were often the responses.


Marlaine Gray (GHC) – Shouldn’t We Be Listening?: Using Twitter for Recruitment, Patient Engagement, and Data Collection in a Study about How Young Adults with End Stage Cancer Make Medical Decisions

Gray begins by discussing research methodological complications when researching young people with metastatic cancer who are geographically spread all across the United States. It can be difficult to find and access this understudied population. Gray also discusses the sensitive nature of the topic is often compounded by time constraints; asking a patient for an hour of their time as part of an interview is difficult when that individual may not have a lot of time left.

Using an already active Twitter community, Gray investigated how young adults with metastatic cancer made medical decisions and whether or not their care matched their ultimate goals. The research was called The Clare Project, named after and featuring a personal story of metastatic cancer. The intention was to understand what these patients wanted for their remaining life and quality of life and translate those goals back into the medical discourse in order to match up treatments. Most participants wanted more quality time with their family, yet they were often being advised to get surgeries. Gray explains this disjunction can be problematic since metastatic cancer patients may never return home from the hospital after these types of surgeries, or they be unable to recover completely and be unable to fully engage with their families again.

Twitter became a way to contact people who were already publically speaking about their cancer experiences. The population of young people online is very active in seeking treatment, finding other patients to connect with, and finding out what the treatments are like. While there are also blogs, threads like Reddit, Facebook groups and pages, and other online message boards, Twitter emerged as the most successful way of communicating with this population. People are online constantly to discuss their cancer experiences.

The metastatic cancer Twitter community uses hashtags such as #mayacc (metastatic adolescent and young adult cancer community), #hpm (hospice and palliative medicine), or #metsmonday, where people with metastatic cancer post about their experiences on Monday. After launching their call for recruitment on Twitter, the Clare Project (Twitter page available here) achieved 200% of their recruitment goal within 24 hours. By using established hashtags and following prominent community members, Gray was able to reach an extensive participant audience.

Adolescent and young adult cancer patients are already actively using social media, many joining Twitter after their diagnosis. Twitter becomes a means of social connection. Gray articulates people are using Twitter to discuss decisions they have to make surrounding their metastatic cancer treatments. Even though patients talk with their doctors and family members, they are using the Twitter support groups to find out what the treatment experiences are. It is these treatment narratives from fellow metastatic cancer sufferers which holds more decision-making weight. Some of these decisions are very high stakes and are based on their peer, rather than medical, advice.

Accessing the first-hand expertise of other patients is labeled as a different kind of expertise than they can get from the medical community. Additionally, for side effects, participants express that doctors can tell them what the treatment is, but their fellow patients will express what the treatment is like and how to manage it. This social support is crucial when participants often do not know anyone else with these types of cancer.

Gray also discusses a kind of “legacy activism,” where people would know they were terminal with few options in their own treatment, but they wanted to advocate for more research funding and attention to metastatic cancer. Social media became a way to engage in social activism. Even though people could not physically go to advocacy events, they could virtually participate from their bedrooms and still spread their message. Through Twitter, people can participate in research and campaigning who would otherwise be unable to do so.

SfAA 2017 Conference Feature Part 1: “Experiences and Identity in Long-term and Chronic Illnesses”

This week on the blog we are highlighting part one of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Beth Moretzsky and Ellen Rubinstein’s presentations. Next week we will feature part two with Karen Dyer and Marlaine Gray.

Beth Moretzsky (GSU) – Cancer Survivorship as Contested Category and Lived Reality

Moretzsky begins by maintaining the term “cancer survivor” is a social category and societal label which does not adequately represent the individuals it claims to include. The label does not encompass the multifaceted, lived experiences of those living with post-cancer treatment and instead conveys a cultural idea of what these individuals can represent to other people. In 2014 the American Cancer Society identified over 14 million living individuals in the United States who received a cancer diagnosis at some point in their lives. Moretzsky states that as we think about how to reach, support, and provide services for this population that has unique medical and social needs, we need to understand how this term “cancer survivor” is interpreted. We also need to appreciate how people who have had cancer respond to this label frequently used by non-profit organizations and the medical community.

Life after treatment for cancer is a period of complicated uncertainty. Rather than a unified “survivorship” experience which is often portrayed by the media, Moretzsky’s fieldwork examines how people characterize their own lives post-treatment. Between June and August of 2016 Moretzsky conducted 19 interviews with individuals who had completed treatment for several types of cancer. Her goal was to determine how participants conceptualize the idea of “cancer survivorship,” whether or not they thought of themselves as a “cancer survivor,” and how stories of experiences, treatments, and diagnoses were carried into the present.

Three main findings of Moretzsky’s research state that “cancer survivor” was rejected as a useful category because of (1) a confusing biological and medical usage, (2) a tendency to define people solely on their illness, and (3) because of various social implications of the term’s usage. Many people merged “cancer survivor” as a biomedical term, indicating a stage in the medical process, with a colloquial label for individuals who had undergone this diagnosis. The line between the social and medical categories often blurs, revealing a meaning- and value-laden term with little practical use. Yet no one can seem to agree upon who falls within the category. Moretzsky asks, who gets to define and speak about illness for these individuals?

In this research, the discomfort over the use of the “cancer survivor” term came up time and time again. Cancer “survivors” are represented as heroes who have triumphed over this illness, perpetuating problematic notions of who gets defined as a survivor, as well as the negative social impacts of applying this label. Moretzsky argues the label placed onto people disregards the experiences of those individuals. The public’s support of individuals battling cancer conjures up the image of a successful warrior rather than an individual with a complex daily experience. The models of success paints “survivors” as strong, optimistic, and successful, even if those individuals do not see themselves in those narratives of triumph. Moretzsky states that not all individuals with a history of cancer view themselves as the pink warriors that the media shares every October. While some participants stated they felt driven to become better people as a result of their cancer, almost as if they needed to fill our societal search for heroes, others strongly resisted this categorization as a “cancer survivor.” The latter often argued against problematic notions that there was something special about them that warranted their persistence, saying the model should instead be: “Don’t be a hero. Ask for the help you need.” These varying responses to treatment contradict the notions of “surviving heroically” and suggested complexity and diversity to human experiences.

Additionally, for many with lingering side effects, financial problems, and emotional complications, this term “cancer survivor” signified a success that may never be achieved, and misrepresented the challenges they continue to face long after treatment completion.

Moretzsky argues that subjectivity is a better model and representation of a person because it is an inherently dynamic concept. Subjectivity allows for agency in how people are self-identifying. To follow the lead of subjectivity would mean we could enable those who have completed cancer treatment to define themselves and categorize their own lives as they see fit. Rather than upholding the category of “cancer survivorship,” allowing individuals to self-identify according to their own experiences would enable other sentiments to be expressed. In Moretzsky’s research, nearly all those who did identify as a “cancer survivor” accepted the original definition of “cancer survivorship” as a biomedical phase of treatment, still expressing problems with some of the heroic language hidden in “survivorship.”

This research suggests that many organizations, particularly those providing post-treatment services for cancer, should critically assess their language. If “cancer survivors” do not identify in that way, it limits the reach of organization marketing to this population, potentially missing many of the people they are trying to help.


Ellen Rubinstein (and Benjamin Crabtree) (RWJMS) – Lost in Translation: The Perils of Prioritizing Cancer Survivorship in Primary Care

Rubinstein begins by describing “Parker” as a man in the Denver suburbs who had left Colorado many years ago to attend a Big 10 college and compete as a pole vaulter. In his sophomore year, after what was assumed to be pain and damage from a sports-related injury, blood tests revealed he had osteosarcoma, or bone cancer. “One day I’m on campus and literally the next day I was back in Denver searching for hospitals around the world.” After a brutal round of chemotherapy, Parker’s leg was amputated mid-thigh. Eight years later the pain started again “out of nowhere.” Even though Parker’s pain was directly related to his cancer-caused amputation, Parker disclosed that he felt it may be better not to tell his primary care physicians about his cancer history. “All of a sudden your treatment for what’s wrong stops right there… It can really take over medically.”

Rubinstein explains that Parker’s story provides us with an opportunity for critical reflection on the push to integrate “cancer survivorship” into routine primary care practice. For Parker, pain was a far more salient issue than cancer. Even though the two ailments were intertwined, he spoke of them as if they were separate entities with their own biography. Rubinstein states Parker did not like to identity himself as a “cancer survivor.”

The story of the “cancer survivor” is a story about the multiple translations, or semiotic events, that occur both within the context of an office visit and within the wider context of a patient’s life. The status of “survivorship” occurs at the moment of diagnosis, where a patient plays an active role as an embattled warrior who is supposed to emerge from the fight victorious. Yet as clinicians begin to recognize that cancer is a chronic condition, it becomes impossible to escape cancer’s existential clutches, leading to a problematic life sentence. Rubinstein quotes, “One cannot just live, but must always be not-dying.”

Further, there is a distinction between “I have” and “I am” diseases. “I am” encroaches on an individual’s self-identity categories. Cancer “survivorship” falls into a similar category: “I have” cancer during an active treatment, but “I am” a cancer survivor. In the transition from active treatment to follow-up care, going from having a disease as part of the body to occupying a medically and clinically delineated subject position, this one medical event now defined them. Rubinstein discusses that many people survive other sickness events yet are not referred to as “survivors.” One participant states she has a history of mononucleosis and hypertension, yet has never been referred to as a “mono survivor” or “hypertension survivor.” Identifying as a “cancer survivor” overshadows the remainder of individual complexity.

Rubinstein argues the medical community is so steeped in cancer rhetoric that when a patient complains of various maladies, such as sexual dysfunction or weight gain, the immediate or inevitable response is that “these are well-known late and long-term effects of cancer and its treatments.” In making this assumption however, clinicians have already ignored what the patient is saying. If the patient does not identify their symptoms as being related to their cancer, then what is the benefit of forcing them to interpret their symptoms in that way?

Part of this framing of symptoms stems from a political and economic necessity for identifying cancer “survivors” as a unique population with distinct medical needs. Making a kinship of individuals who have experienced cancer, contrasted against those who have not, makes them a large and powerful constituency. Yet cancer in reality is slippery, chaotic, and constantly being redefined. Experiences and outcomes vary widely, making it impossible to group together the vast array of subjectivities into one entity. Rubinstein argues that current biomedical discourse does a poor job of capturing complex and diverse lived experiences.

Rubinstein concludes by asking if an individual does not consider themselves as a “cancer survivor,” then what are the broader implications for their health and well-being when clinicians insist that their current problems are the direct result of their cancer or cancer treatment. How much does etiology matter in the moment of the clinical encounter, and how much does it influence a patient’s future relationship with their primary care physician? Rubinstein states that in de-emphasizing the “survivor” in primary care conversations, we recognize that a history of cancer is only one set of concerns among many.


Part two of “Experiences and Identity in Long-term and Chronic Illnesses” featuring Karen Dyer and Marlaine Gray will continue next week. 

Message from the Society for Applied Anthropology 2017 Annual Meeting

sfaa-2

“Like the roads to Rome, all trails lead to Santa Fe” (Ruth Laughlin, Caballeros, 1931)

The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the Society for Applied Anthropology 2017 Annual Meeting in Santa Fe, New Mexico. This year’s meeting will be held March 28th – April 1st, with session listings and other helpful information available here. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting.

This year’s theme is “Trails, Traditions, and New Directions,” embracing the Santa Fe location as a place steeped in centuries of traditions, where Native histories reach back 10,000 years and follow paths through time and across geographical space. Metaphorically, this theme highlights the importance of understanding the history and intended destination of those “theoretical trails” that we follow when engaging our community partners, methodology, and active interpretations. Presentations that approach current issues from a historical perspective—including health disparities, energy and climate change, interpreting culture—or any of our broad concerns are encouraged, as is work that critically examines the motivations that have guided social science research and practice in the past.

Highlights from this conference will be featured on the blog next week.

Best wishes,

The CMP Editorial Team