Interview with Soha Bayoumi

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Soha Bayoumi is a Senior Lecturer in the Medicine, Science, and the Humanities Program at the Johns Hopkins University. She is presently completing two book projects, one (with Sherine Hamdy) on the work of doctors in the Egyptian uprising, and the other on the social and political roles of doctors in relation to health and justice in postcolonial Egypt.

What is your article “Nationalism, Authoritarianism, and Medical Mobilization in Post-revolutionary Egypt” about?

This article explores the links between medical practice and expertise, on the one hand, and nationalist discourses, on the other, in the context of the 2011 Egyptian uprising and the years that followed, which witnessed a consolidation of political authoritarianism. It investigates how doctors played a significant role in countering political regimes’ acts of violence and denial. It traces the trajectory of the doctors’ mobilization in the 2011 uprising and beyond and demonstrates how the doctors drew on their professional expertise and nationalist sentiment in their struggles against a hypernationalistic military state. It contrasts activist doctors’ idea of nationalism with the state’s and shows how medicine has served as a site of awakening, conversion narratives, and building of bridges in a polarized society where the doctors were able to rely on their “neutral” expertise to present themselves as reliable witnesses, narrators, and actors.

Tell us a little bit about yourself and your research interests.

I work at the intersection of the history of medicine, science and technology studies, and political theory. My work is informed by postcolonial studies, gender studies, and social justice, and centers the ways in which medical expertise is shaped by and deployed in different political contexts.

What drew you to this project?

This research is part of a book-length project that I have been working on for the good part of the last decade with Sherine Hamdy. We were both amazed and intrigued by the different roles played by doctors in the Egyptian uprising and its aftermath and felt compelled to document that episode of the Egyptian revolution and ask questions related to what motivates doctors to engage in politics, especially during such volatile political moments.

What was one of the most interesting findings?

We were really struck by how doctors reliance on their “neutral” expertise and their attempts to efface the political in their work actually reinscribe the political in different ways, in ways that both allow doctors to either resist state violence or abet it.

What are you reading, listening to, and/or watching right now?

I’m currently watching the Netflix show, Mo, which is, as far as I know, the first mainstream show about a Palestinian-American to ever make it to streaming screens in the US. I’m reading Oliver Sacks’ first memoir, A Leg to Stand On, which is focused on an accident that caused him to lose the use of one of his legs and his reflections on being patient, after a long career of being a doctor. And I’ve just finished listening to the audiobook, Born a Crime: Stories from a South African Childhood, by Trevor Noah. I love Trevor Noah’s style of comedy, and I think his autobiography book, which contains a lot of comedy, is best enjoyed performed by Noah himself.

If there was one takeaway or action point you hope people will get from your work, what would it be?

I think it is the idea that very few things in life are actually politically “neutral”—that what we take for granted as apolitical or technical or neutral has so many ramifications on politics, writ large. Many of the daily actions we take and the statements we make are inscribed in a political context and often function to reproduce and perpetuate that context or to subvert and change it, if we so choose.

Thank you for your time!

Other places to connect:
Website
Twitter
LinkedIn
Academia.edu

Interview with Katarzyna Szmigiero

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Katarzyna Szmigiero is a graduate of the University of Łódź, Poland. She is an Associate Professor at the Institute of Literary Studies and Linguistics of the of University of Jan Kochanowski, Poland (Branch in Piotrków Trybunalski). Her research interests concentrate on medical humanities, especially cultural representations of psychiatry and gender, and genre fiction.

What is your article ““We All Go a Little Mad Sometimes:” Representations of Insanity in the Films of Alfred Hitchcock“ about?

The article deals with the way motifs connected with psychiatry (doctors/treatment/people diagnosed with mental illness or individuals displaying disturbing behavior/attitudes to mental psychopathology) are used in the films of Alfred Hitchcock. First of all, it tries to answer the questions why the director so often presented mentally unstable characters in his works. It also looks at how Hitchcock gently questioned the assumptions about mental illnesses and its origins that were dominant in his times. Finally, it briefly mentions the legacy of Hitchcock if the cinematic portrayals of insanity are concerned.

Tell us a little bit about yourself and your research interests.

I am interested in cultural representations of madness, gender studies, and popular literature.

What drew you to this project?

I have always loved Hitchcock’s films and saw Frenzy in my early teens, as it was my dad’s favourite. It was one of the most unpleasant and, simultaneously, hilarious film I have ever seen since.

What was one of the most interesting findings?

On the surface, Hitchcock appears to be following the psychoanalytic approach, especially in his American movies. However, he always undermines the official discourse on madness, proving that we are all, sometimes, a little mad and there’s nothing wrong about it.

What are you reading, listening to, and/or watching right now?

I am currently an avid reader of the retellings of the Medusa myth (as well as other chick lit fantasy books about antiquity).

Watch Hitchcock! Old films may seem dated, especially if you are not used to them. But his dialogues, designs, cast is often genius.

Thank you for your time!

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

Posted by sonya.petrakovitz

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.

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

Posted by neelymyers

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.

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”

Posted by sonya.petrakovitz

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

via Columbia University Press website

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

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

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

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

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

Posted by sonya.petrakovitz

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.

Interview with Incoming Social Media Editor: Monica Windholtz

Posted by sonya.petrakovitz

This week on the blog we are featuring an interview with our newest addition to the Culture, Medicine, and Psychiatry editorial team, Monica Windholtz. Monica will be joining us as a Social Media Editor on the journal’s blog, Twitter, and Facebook accounts this month. Monica has already been featured on the blog in July with her article highlight of “Engaging with Dementia: Moral Experiments in Art and Friendship,” available here. In this post, we learn about Monica’s background, academic interests, and her ideas for expanding the Culture, Medicine, and Psychiatry blog.

What is your academic background? How did you become interested in medical anthropology, medical humanities, and interdisciplinary cross-society research?

Currently I am a student at Case Western Reserve University in the Integrated Graduate Studies (IGS) program, working on both a Bachelor of Arts in Medical Anthropology, and a Master of Arts in Bioethics with a special focus on the Medicine, Society, and Culture track. I also will graduate with a minor in Sociology and a certificate in Global Health. My interest in these fields began with a study of Dr. C.W. Lillehei, an American heart surgeon who helped break ground in American heart surgery and the invention of the pacemaker. As I explored the connections between health care and people, I became fascinated with the intersections of policy, procedure, and the individuals they affect. I hope to use my knowledge of these intersections to promote people-oriented policy after attending law school.

2. What are your research interests?

My research interests include post-mortem uses of bones, cultural perceptions of death, health care policy and practice, the differences and inequalities in societal roles across the genders, and reproductive health. I am currently working on my senior capstone project: a literary review of the death rites of several cultures that considers the changes local rituals have undergone due to health problems, such as the effect of Ebola on Liberian burial.

3. What is your favorite running feature on the blog?

My favorite running feature on the blog is the “From the Archive” series, which features article highlights and from previous CMP journal issues. It is an interesting way to highlight what types of articles have been published in the journal that are still relevant for current readers, and connects blog followers with articles they may not have previously seen.

4. What new features or ideas will you bring to the blog?

I am looking forward to expanding on Sonya’s work connecting the journal’s articles to current events. As health is an ever-changing field and its interactions with society are always shifting, it will be exciting to highlight these connections. I would also like to provide blog readers with more external content from our contributing journal authors, such as with the University of Washington Today: Q and A with Janelle Taylor post, available here, that featured a video interview with Janelle Taylor, the author of the article Engaging with Dementia: Moral Experiments in Art and Friendship.

5. How does your unique perspective integrate with the goals of CMP?

People need to have access to relevant and validated knowledge, and a curious mind, before they can effectively implement positive and meaningful policy changes. CMP promotes the study and exploration of the types of knowledge vital to these goals. As a reader of the journal, I continue to learn a great deal about various cultures and their interaction with, and impacts on, health care. I am excited to help connect others with the articles and ideas published in CMP, and looking forward to working with the rest of the CMP editorial team!

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

Posted by sonya.petrakovitz

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References Cited:

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

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

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

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

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

Further Reading:

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

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

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

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

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

Article Highlight: Vol. 41, Issue 3, “Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates”

Posted by sonya.petrakovitz

This week on the blog we are highlighting a paper by Lesley Jo Weaver and Sarah Trainer entitled Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates. The authors build on sociologist Erving Goffman’s classic notion of stigma as a social phenomenon to investigate the stigma attached to two seemingly disparate conditions: food insecurity in rural Brazil, and obesity in the urban United Arab Emirates. The authors’ analyses emphasize that both circumstances are stigmatized because they represent a deviation from a deeply-held social norm. Additionally, in both cases, the stigma related with food insecurity and obesity is likely at least as damaging to personal wellbeing as are the biological effects of these conditions. To close, Weaver and Trainer suggest that these forms of stigma transcend individuals and are principally structural in their origins. Viewing stigma as a common element of the human condition refocuses the analytic lens toward structural-level factors that need to be addressed in order to improve human wellbeing.

Weaver and Trainer begin by discussing the theoretical grounding of stigma. Frequently defined as an indicator of disgrace signifying physical, moral, or social flaw, stigma is a powerful determinant of physical and mental health. Whether externally imposed by others or internalized and self-directed, stigma may come from or produce feelings of shame and embarrassment. Sociologist Erving Goffman described stigma as a “single social process uniting a dizzying range of conditions and behaviors… Stigma is stigma because it is ‘fundamentally discrediting’—that is, it is perceived to index something inherently negative about a person.”

Precisely because stigma draws on core beliefs held by mainstream society and has consequences for both physical and mental health, stigma should be a public health concern. Having a unitary conception of stigma can be operationalized as status incongruity—that is, the potentially measurable difference between culturally held attitudes of what people should be or achieve in a given realm, and what they are actually able to be or achieve.

Food insecurity is defined as a lack of secure access to safe and culturally appropriate foods at all times. Food security is often stigmatized since it may be a public symbol of poverty, or force one to have to obtain food in socially unacceptable ways. Even when not visible, food insecurity often generates self-directed stigma, often with damaging psychological impacts and experiences of status incongruity.

While clinically obese bodies are an epidemiological norm worldwide, they are rarely socially normalized in modern Western cultures. Further, evidence suggests that obesity stigma has increased along with increasing global obesity. Obesity cannot easily be hidden, and therefore stigma acts through both internal shame and external blame, which distinguishes it in profound ways from food insecurity. Stereotypically, obesity stigma stems from a combination of Western beauty ideals of aesthetic thinness and increased risk of ill health, along with moral beliefs that obesity signals lack of control. Further, obesity now can serve as a visible marker of poverty in many cultural settings, signaling status incongruity.

The authors discuss two different case studies—Brazil and the UAE—precisely because the severity of the differences between the settings exemplifies the powerful underlying similarities in the ways stigma influences health and well-being through feelings of shame, blame, status incongruity, and social isolation.

Weaver’s research in rural Northern Brazil focused largely around food insecurity and mental health. Ethnographic research conducted in urban Brazil establishes that bodies are read as high or low status, and weight and body shape are a key part of that. There is also an agreed-upon set of factors that signal the “good life.” These signals include things such as the ownership of a television and computer, participation in leisure activities, and the attainment of a desirable body shape. Some food items signal luxury and abundance while others carry stigma because they indicate humbleness, if not outright poverty.

Household food insecurity scores collected from pilot study phases were associated rather strongly with symptoms of depression among heads of household. The depression associated with food insecurity in this setting may be a result of the understandable stresses of having limited resources, but potentially also a result of the shame related to having to eat low-status foods or engage in non-normative food behaviors, such not being able to invite neighbors to eat or reciprocate sharing food.

Many people reported that they were unaware of food insecurity in the community, despite the authors’ documentation of its frequency. It appears in this setting that the harmful effects of food insecurity on mental health might stem more from self-stigmatization of one’s own food insecurity than from active stigmatization by others. The authors state they suspect that shame and self-stigma surrounding food insecurity motivates people to hide it.

In the United Arab Emirates, the authors’ discussion of stigma focuses on interwoven behavioral and aesthetic norms, and stigma related to perceptions of deviations from these norms. Food and eating patterns, as well as bodies and body norms, have seen particularly profound changes over the course of only twenty or thirty years of intense socioeconomic, structural, and cultural shifts. Despite the conspicuous consumption and wealth on display in the UAE, poverty and food insecurity are also present within the local population and foreign workers, but again the social pressure to hide such deprivation was intense.

Much more publicly considered in the UAE is the growing apprehension over obesity and associated chronic diseases. While “fatness” was once a desirable physical characteristic, especially in women who were expected to “fill out their skins” in order to display familial wealth, today young people reliably express physical female beauty ideals that aspire to an hour-glass shape, while stigmatizing bodies categorized as too fat or too skinny.

At issue here are “bodies that don’t conform.” The implications of lack of cultural consonance with body norms in this context are serious. In the UAE, the recipients of stigma are very thin or obese bodies, and in Brazil, the recipients are people experiencing food insecurity. The moral discourse around these issues, the ways in which this stigma is enacted, and the importance of specific types of stigma over others varies in important ways between research sites, however. The relative importance of internal versus external stigma in each case is likely related to the fact that one condition (food insecurity) can be hidden, while the other (obesity) cannot.

For the authors, a second common element linking these two cases of stigma is the fact that each signifies a departure from a social norm, accompanied by intense social isolation. Third, both food insecurity and obesity have well documented consequences for physical health, as well as important but poorly understood consequences for mental and social health. Weaver and Trainer states that these common features suggest stigma around food insecurity and obesity can be conceptualized as two “outlets” for the same social phenomenon: “health stigma.”

The authors conclude by asserting a useful implication of considering stigma as a single social phenomenon is that it refocuses away from the individual and toward structural causes of stigma. While the everyday issue of stigma is enacted on the individual level, stigma is only stigma because people concur at a larger population level that a position is stigma-worthy. Focusing on the commonalities between stigma experiences functions as an important reminder that stigma is not just personal but also collective. Policy implications of stigma-as-structure have largely been overlooked.

Article Highlight: Vol. 41, Issue 2, “The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time”

Posted by sonya.petrakovitz

This week we explore Lone Grøn’s The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time. Grøn explores moral work and moral selves in the context of the obesity epidemic and weight loss processes. Cheryl Mattingly’s notions of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here) explore moral cultivation over time that cannot be disconnected from notions of biographical and narrative self. Building off Mattingly’s concepts, as well as philosopher Bernhard Waldenfels’ phenomenology, Grøn proposes the notion of a responsive self.

Grøn begins by introducing Rita, a participant in the obesity program at The Lifestyle Center, a Danish patient school which teaches self-care, diet, and exercise practices to people suffering from or at risk of what is termed “lifestyle-related diseases.” Grøn explores Rita’s reflections on obesity and weight loss, with specific attention to the transformation in notions of self, agency, and morality from fieldwork between 2001-2003 and 2014-2015.

Rita asks herself questions about her weight loss struggles, such as, “Why don’t I grow-up enough to take responsibility for my own well-being? Why is what I know to be the right thing to do a million miles removed from what I do in reality?” References to fighting the evil will or desire of your body, to sinning and backsliding, are plentiful and situate weight loss in the domain of morality. This places the concerns and reflections on weight-loss within broader historical and cultural ideas on self, agency, and morality, asking what kind of self one is able to be in the face of conflicting wills and moral demands.

Grøn takes up an argument that Mattingly put forward and developed, namely that moral cultivation over time cannot be disconnected from a notion of self. Up until the last decade of the second millennium, attention to the relationships between body weight, food, and health were scarce in a Danish setting marked by cultural practices and values of “hygge,” that is, socializing by sharing food and alcohol, often to excess. Over the past two decades, this relationship has changed dramatically, and the consumption of food and drink have become morally charged in all corners of Danish society, from family spaces to the widespread network of institutions constituting the Danish welfare system. Further, a politically announced “paradigm shift” in the beginning of the second millennium in Danish health care services shifts attention from the treatment of acute diseases to the prevention of chronic diseases.

Grøn states that in many ways being obese has become an uninhabitable position. What used to be big and cozy (“hyggelig”) has become obese and alien. In the face of overwhelming personal and family histories of unsuccessful attempts at weight loss, temporary success is usually followed by increasing weight gain in a pattern widely documented in the scientific literature on weight loss processes over time. Both personal and family experience and scientific evidence define success as improbable, yet families struggling with obesity continue to experiment against the odds all the same. Thus, for Grøn, life itself becomes a laboratory.

Taking the experienced and biographical self seriously has allowed acknowledgement of the immense work of moral experimentation that Rita has engaged in over a lifetime. Furthermore, many other events and projects make up her life, including the cultivation of healing powers, of a garden of flowers, as well as of a home, family, and work life. This picture of Rita’s moral self could easily be lost if we were only concerned with the “obese” self, which can be constituted through workings of the bio-power and governmentality techniques of the Danish welfare state.

Grøn concludes by detailing the characteristics of the responsive self, emerging within the demand response dynamic. The responsive self displays both an event form that persists over the years (“I respond, therefore I am”), but also changes in terms of the content of the response. Thus, the notion of the responsive self stresses equally the suffering and the agentive dimensions of action—”an active passivity and passive activity.”

Lone Grøn is a Senior Researcher at VIVE The Danish Centre of Applied Social Science in Denmark, as well as a Senior Project Manager at KORA. She has done extensive anthropological research and ethnographic fieldwork on patient perspectives on chronic diseases, obesity, and behavioral change, highlighting the complexities of health work in the contexts of everyday lives. Her recent areas of research concern include social contagion in epidemics of non-communicable diseases and conditions, specifically in relation to kinship, relatedness and obesity; vulnerability and inequality in old age and the search for the good old life; and theoretical developments within philosophical and moral anthropology as well as phenomenological approaches in anthropology, which serve as the epistemological ground for experience-near and close-up studies of patients, citizens and families.