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

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


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

Thursday, Oct 19 – 1:30-2:30pm

With David Li, Yiyang Xia, and Grace Yin

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

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

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

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

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


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

Thursday, Oct 19 – 2:45-3:45pm

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

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


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

Thursday, Oct 19 – 4:00-5:00pm

Creating Compliance: Using Games to Engage Patients in Medical Management 

by Kristel Clayville

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

The Ethics of Influence: Celebrity Physicians and Social Media 

by Patrick Herron

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

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

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

Make Aging Great Again: Imagining a YUGE Lifespan

by Leah Fowler

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

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


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

Sunday, Oct 22 – 9:15-10:45am

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

by Nicholas Brown

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

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

by Ronit Stahl

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

Hinduism and Bioethics: Some Basics and Some Applications

by Deepak Sarma

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

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Interview with Incoming Social Media Editor: Monica Windholtz

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. 


 

  1. 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

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”

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”

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.

University of Washington Today: Q and A with Janelle Taylor

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

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

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


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

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

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

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

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

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

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

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