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.

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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

 

SPA Interview with Dr. Greg Downey and Dr. Daniel Lende

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This week on the blog we are featuring a partial summary of an interview with Dr. Greg Downey and Dr. Daniel Lende, conducted by Kathy Trang, as part of the Society for Psychological Anthropology “Voices of Experience” series. In this audio conversation, available in full here, the doctors discuss their work establishing the field of nueroanthropology. Together, they served as co-editors of The Encultured Brain: an Introduction to Neuroanthropology, available from MIT Press.

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.


spa voices logoThe interview begins with an introduction of the authors and an acknowledgement of the wide diversity of interests and geographic locations of the audience. Then, Kathy Trang launches into a general discussion about the academic frustrations that led to the foundation of neuroanthropology.

Kathy Trang: We’ll start with the origins of neuroanthropology. As you guys detailed in the nueroanthroplogy book which was published in 2015, as well as various other platforms, such as the blog, one of the impetus behind nueroanthropology was the dissatisfaction that you both felt with either sociocultural theory or with biological anthropology. Could you tell us a little bit more about your frustration at that time? And what you felt from the standpoint of your research was missing?

Dr. Greg Downey: My dissatisfaction was really quite simple. When I was in Brazil, I was working on with Capoeira practitioners, practitioners of this Afro-Brazilian martial art. It’s pretty arduous, pretty demanding, like a lot of martial arts and acrobatics. This was a physical discipline. And the people there were claiming that it has all these effects. And I was trained straight up cultural anthropology, University of Chicago, They would say, the people I was interviewing were always working and learning alongside, would say “Oh, it changes the way you move, it changes the way you perceive. You see differently, you balance differently.”

I kept writing this down, good classic social constructionist, interpretive anthropology. At some point, I was like “is this plausible?” I mean, could it really do this? I realize that it was an empirical question that in fact I had to look outside the culture anthropology I had been taught to find out. As I started to explore sort of the neuropsychology of skill acquisition and training and sports, I found out that not only was it plausible but there were all kinds of interesting documented effects. I realized the culture theory, in this sense, around the question of embodiment, I’ll come back to the word embodiment at some point, it was pointing in the direction of neurological change without actually attempting to theorize about neurological change or explore neurological change. In a sense, I kind of felt like the cultural theory I had been taught was under ambitious. There was a clear boundary with the biological and they didn’t want to cross it, but in the process that meant that they were ignoring a lot of the effects of the enculturation I was seeing.

In a sense, it was feeling like I was up against an artificial boundary that had been drawn for me by my training, and I was dissatisfied with that. Maybe I should hand that over to Daniel. Where were you?

Dr. Daniel Lende: I would more emphasize the excitement of trying to combine neuroscience and anthropology. In my case, I had worked as a councilor to kids that had drug problems in Colombia prior to starting grad school. And then I went to grad school in the biocultural program at Emory University, and so it was an integrative program but nonetheless there was a biological/cultural split there.

I didn’t find ways to always connect what I was learning with social theory or from evolutionary theory to what I already knew about these kids’ lives in Bogata, Colombia.

For example, addiction is often referred to in shorthand as “queire mas y mas” – to want more and more – in Colombia. I came across a paper, a 1993 paper by Kent Berridge and Ann Robinion, that talked about addiction and correspondence between neuroscience and anthropology. I wanted to pursue that more.

Trang: Coming in pursuit of neuroanthropology, to you guys what really defines neuroanthropology? That is, how do you demarcate neuroanthropology from closely related disciplines, such as psychological anthropology, for instance, or cultural neuroscience, and/or population neuroscience?

 

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Dr. Daniel Lende, via the University of Southern Florida Department of Anthropology

Lende: I’m going to tackle the first part of that, more in relation to psychological anthropology. I think Greg and I have always been pretty clear that neuroanthropology is what it says, the combination of neuroscience and anthropology. The word anthropology is full, so it’s more emphasis on anthropology than neuroscience. We’re both anthropologists.

 

It is an approach that aims to, at the one hand permit anthropologists to draw cognitive science broadly, I would say, in pursing their own research questions, specifically questions they have that are field-based, get data in field-based settings. But as an outcome of doing that type of work, suddenly we have a rich appreciation of what we call “brains in the wild.” That then can provide feedback to neuroscientists, cognitive scientists working in laboratory settings, and also, in both our cases, but for example in my case, clinicians working with addiction, or in Greg’s case, coaches and other people working in applied sciences. So our field-based approach is something that makes neuroanthropology distinctive from some of the other traditions that emphasize the nuero side.

In terms of psychological anthropology, I think we drew a lot on how psychological anthropology recognizes cross cultural variation and mental processes and how psychological anthropology emphasizes the individual in context. But I would say that we have found more inspiration in neuroscience in the third way of cognitive science as a way to really try to grapple with empirical questions that came up during fieldwork. Now today we can develop it differently and take that integration of neuroscience and anthropology to sort of develop new framework to examine patterns of human variation in more naturalistic settings.

Downey: I’m going to pick up the cultural neuroscience side of this, because I end up talking to a lot of cultural neuroscientists and I really admire their work but one of the things they run against is they are neuroscientists first, not cultural theorists first. They work with a cultural model they can operationalize quite easily. That’s often a very limited model. Frankly, it looks very old fashioned; it often looks like it’s just running the same tests on different what are basically ethnic groups, wherever they have an fMRI machine and comparing the results and calling the differences the culture. There’s all kinds of intellectual problems with that, but it shows that if you put the experimental design first and the cultural theory kind of a distant, last place, you can wind up with some very unsophisticated accounts of what you’re actually getting in the fMRI, especially when you’re just contrasting populations that we know that there’s a long history of drawing these very blunt comparisons between, say Asians and Westerners. Cultural neuroscience I think in some ways there’s a good conversation to have but we have to bring an operationalizable cultural theory to that.

Lende: Similarly, the whole population neurosciences or population-based epidemiological models for thinking about neurological variation, they’re really interesting but they’re very much based on a kind of exposure-epidemiological demographic model.  I think they’re a little less developed than the cultural neurosciences, so there’s an idea of exposures.  We can talk about brain differentiation as a result of exposure. Culture isn’t just an exposure, like being exposed to an environment insult or a pathogen of some sort. The danger of medicalization in this case is that it removes a lot of the most interesting interesting phenomena. Certainly, my work in skill acquisition and sensory training, it’s very difficult to model this as exposure because it’s this really, really long term projects that unfold over time and stages to enculture the brain in a particular way. We have a lot of conversation with all three of those, but there’s limits that we run up against.

TrangI know that in one of your publications, Greg, you had critiqued this sort of return to cultural dimensions. What to you guys is culture for neuroanth? What is the best take, or an adequate take, of culture for neuroanthros?

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Dr. Greg Downey, via his personal website

Downey: Daniel and I have been arguing about this for the past week, just so you realize. I just think of culture as a really lousy ptolemaic kind of category, a pre-Copernicus category in which people slap on any difference between groups and they’re often times applying it to completely different sorts of things. They’re using a Parsonian model of what’s causing it, a pure symbolic layer of existence. To me, every time I read cultural theory it’s like we’re theorizing fifteen different things at once. And it’s no wonder we have a morass. What people are getting at with culture is just the idea that there are some differences between groups, between peoples, that are induced, that are not innate in their biology. How do we think about that pattern of both similarity with group and differences between group? The whole sort of hermeneutic model that culture is interpretation is part of what limits us from seeing the neurological impacts of enculturation process. I think we’re going to have to disassemble culture into pieces to figure out how to theorize it.

 

LendeI have a more pragmatic approach to how to think about culture as neuroscientist and anthropologist. One of the first things is to recognize that most of the models of human variation used in psychology and cognitive science broadly, are models of individual variation, often based on the idea of a bell curve. Whereas most of the phenomena anthropologists, particularly cultural anthropologists, study are shared phenomena. In other words, most people share the same amount of variation, which is why on the individual basis approach of assessing culture doesn’t necessarily get at the shared depth that can tie a group together and make them distinctive from other groups, whatever level you’re talking about. In Greg’s case it can be the Capoeira practitioners, in my case it can be people who gather together in certain scenes, drug use scenes in Bogata, up to talking about much broader things, in my case for example, why Colombia might have had, at the time of doing research there, lower drug use rates than the United States. What sort of sociocultural reasons explain that? It’s not necessarily an exposure because the epidemiological exposures are actually quite similar between the United States and Colombia.

From that recognition of looking at the shared aspect of human life, I would just outline that those series of different types of cultural approaches that can be useful to different types of research questions. I think in many ways the interpretive approach, coming from Geertz, can be quite useful in understanding certain things that people report. For example, a lot of the interpretation of what drug use meant to my informants were accessible to using psychological anthropology approaches. But that’s a different type of culture theory than one that’s more place-based, that would have drawn ritual or what’s happening in a particular scene. That’s different from an approach that might emphasized by the idealogical dimensions that surround our understanding of neuroscience and the production of neuroscience. Those are also different from more practice-based approaches which Greg engages with more than I do. I think there’s a variety of types of culture theory and they can be useful in different ways and at different times just as there’s a  variety of neuroscientific approaches out there.

 


The interview with Dr. Downey and Dr. Lende 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. Greg Downey is a Professor of Anthropology at Macquarie University in Sydney, Australia. He attended the University of Chicago. His work is focused in Brazil, the Pacific, and the United States and his research interests include the census, sports, dance, and skill acquisition. His current project is human echolocation among the blind.  Dr. Downey is the author of several books, including Frontiers of Capital: Ethnographic Reflections on the New Economy (2006) from Duke University Press and Learning Capoeira: Lessons in Cunning from an Afro-Brazilian Art (2005) from Oxford University Press.

Dr Daniel Lende is an Associate Professor of Anthropology at the University of South Florida. He trained at Emory University. His research interests include substance use and abuse, stress and resilience, the intersection of anthropology and nueroscience, and public and applied anthropology. He has done work in Colombia and the United States. His book, Addiction: A Search for Understanding, is currently in preparation.

Kathy Trang is the Electronic Publications Editor and Anthropology New co-Editor for SPA.

 

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Article Highlight: Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

This week on the blog we are highlighting a paper by M.A. Rubel, A. Werner-Lin, F. K. Barg, B. A. Bernhardt, titled Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results. The authors completed phone interviews with women and their partners who had received positive prenatal microarray testing results. The authors then analyze the data using modified grounded theory, discussing the theme of cultural expert knowledge and the implications on research and practice of prenatal testing. They close by recommending a future assessment of informational needs before testing to aid both the patient and their partners.

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The authors begin by describing the increase in the use of prenatal genetic testing by pregnant women. Potential methods of genetic testing include invasive, non-invasive, and integrated screening for various potential fetal anomalies or genetic conditions. Chromosomal microarray, also called prenatal microarray, is a prenatal test that is used to “detect copy-number variants not detectable by conventional cytogenetic” (Rubel et al, 2017, 383). These test are recommended by the American College of Obstetrics and Gynecology if an anomaly is found via ultrasound. Parents feel anxiety after receiving a result of variant of uncertain significance, which can affect their decision-making following the result.

Western biomedicine helps to inform the biomedical expert knowledge (BEK) that holds a privileged status. BEK has roots in cultural and social conditions that shape how the knowledge is interpreted. BEK is founded in the idea that “aspects of the patient’s body and its symptoms are variables that can be independently and objectively evaluated and treated” (384). However, the genome may also be interpreted through a standard outside of biomedical knowledge. These other frameworks of medical knowledge may be used to interpret the testing done to women.

For this study, the authors recruited subjects for the study from the distribution of a pamphlet to pregnant women who received results from microarray testing. These women could then choose to participate in a short online survey that asked for demographic information and the results of the microarray test. The women who completed the survey and indicated interest were then e-mailed with information about the interview portion of the study. In total, 152 female patients completed the survey and 27 women were interviewed. 12 of their male partners were then subsequently interviewed.

Those who received positive results with uncertain or variable outcomes underwent a “state of crisis” after their results (388). They attempted to find the information related to their situation; some clinicians even provided the patients such biomedical information through literature and leaflets. Some patients were reassured by entrusting the health care providers to also provide the knowledge. Yet some providers may not wish to take a directive position and provide such materials.

Most of the patients interviewed expressed frustration that there was not enough information or resource provided initially by their clinicians. Patients that sought out BEK often turned to the internet. Those who considered themselves educated found it easier to search the information they could find online, yet there was still a general frustration about the BEK that was provided. Because of this frustration, patients often turned to other sources of understanding. The authors also extensively other ways of knowing and understanding their test results. These include embodied knowledge, spiritual beliefs, social networks, and a family history. These other types of knowledge other than BEK allowed the patients to understand their test results on their own terms.

The authors propose the term “Cultural Expert Knowledge” or CEK to encompass the types of knowledge that patients gained from outside the biomedical paradigm. This non-expert knowledge was some patients only information source. This provides a contrasting source of information to BEK and helps patients to understand their test results on their own terms. The authors close with a discussion about the difficulties of quantifying CEK since it is based on individual conceptions and outside of the biomedical sphere. They acknowledge the limitations of the study and provide further areas for expansion of the research base.

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.

Article Highlight: Vol. 41, Issue 3, “Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum”

This week on the blog we are highlighting an article from our most recent edition, Volume 41, Issue 3, by Mihan Lee entitled Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum.  The study explores the patients’ access to psychological support when dealing with a diagnosis of infertility. This is done through patient interviews and a cyber-ethnography of an online forum hosted by RESOLVE: The National Infertility Association. Lee explores the themes common across the different forum threads and the interviews to better understand the support systems of patients. Several themes emerge, such as the difficulty in obtaining treatment for many women because of resource burden and the stress of finding an option that fits within their parameters. The author proposes that not having the resources to access treatment silences women and denies them the support they came to the forum in search of.

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Patients experience of their illness during and after treatment can be impacted by the social support in their environment. Patients in the contemporary age build social support networks on the Internet, turning to it for health information and access to resources to make decisions. Infertility patients can receive both the privacy and anonymity they often desire when using online resources for support. Those who are infertile may experience stigma for their condition or shame at not being the same as others who are fertile.

The author calls the main narrative of American infertility the ‘persistent patient’. This narrative is defined by a woman who wants a child and expresses her desire for through material resources. This requires that the woman have an education and access to financial resources so that she can access the resources available to medically treat her infertility. This creates a subset of women among the rest who are able to fit the ‘persistent patient’ narrative.

For the study, the author identified women to interview through posts on the sites infertility advocacy organizations. The fifty-five women interviewed were given a demographics questionnaire and then interviewed to find their patient narratives and discover both personal and professional views on infertility. Lee also conducted a “cyber-ethnography,” a critical analysis of posts in an online patient community. This was used to compare the effects of the Internet on the social support of the women. These were followed up with more refined interviews of patients.

For many women who experience infertility treatment, there is an extreme emotional burden. There is also a pressure  experienced from the stigmatization of the condition. While infertility is a condition that affects seven million women, many women still feel like the condition is abnormal. Because of this, women keep their condition and experience private.

Within the forums, there was a running theme that friends and family did not understand the stress and struggle of infertility, which further stressed the women. The posters in the online community then became a support network for the women who were feeling an external lack of support. They were able to understand other women’s pain because it was similar to their own. However, this is offset by the validation of only certain narratives, especially through an assumed access to the resources to pursue treatment.

One type of thread, the “roll call” served as “an opportunity for all patients starting a certain type of treatment .. to connect with one another”. These roll calls allowed women of different experiences to connect with those who could offer them support through their parallel treatment journeys.

Interestingly, Lee notes that it seems as if those who most often frequent the boards are those who have had several treatment cycles. This juxtaposes the lack of discussion about the financial, time, and other resources necessary to pursue multiple treatments. Without these resources, some women cannot pursue the infertility treatments they would like. Data suggests that despite the lack of discussion, this is a prevalent problem. Most states do not require that insurance option cover infertility treatment and only 20% of employers cover ARTs.

The financial burden on women seeking treatment that was seen in the online forums was also reflected in the in-depth interviews as well. Some of the primary barriers to using ARTs was the overwhelming price. To be able to pursue these treatments, women must have type of disposable income that can go towards it. Lee suggests that the lower-income and uninsured women may either not be vocal or silenced by the culture of the forum groups. In the otherwise vocal community, posts about stopping treatment because of financial strain often went unanswered. And when there were responses, they often ignored the real constraints of financial burden.

When women bring up their concerns, the dominant narrative of the ‘persistent patient’ raises its voice louder than any of the other posters within the group. This adds further strain to the women who are worried about their financial experiences of infertility because the place where they have found solace rejects them. A counter-discourse emerges as women discuss the ways in which they have learned to cope with having a childfree life. Lee suggests that the forum should broaden its reach to offer for support as women adjust to their decision to stop treatment or inability to continue treatment.

Lee concludes that the role of the ‘persistent patient’ is one that is only available to a privileged demographic and that the socioeconomic factors that affect accessibility to resources also affects the ability of some mothers to have children. The condition of infertility is thus not experienced as a single thread and the nuances of different women’s backgrounds should be considered when hearing or researching their narrative.

 

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

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.