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.

SPA Interview with Dr. Rebecca Lester

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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


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

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

Book Review: “A Surgeon in the Village”

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


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

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

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

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

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

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


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

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

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.

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.

Article Highlight: Vol. 41, Issue 2, “The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care”

This week we explore Lesley Sharp’s The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care. Sharp asks, “Why do lab monkeys watch TV?” This paper examines the prevalence of televisions in primate housing units based in academic research laboratories. Within such labs, television and related visual media are marked as part of welfare and species-specific enrichment practices intended for research monkeys. In many research centers, television figures prominently in the two inseparable domains of a lab monkey’s life: as a research tool employed during experiments, and in housing units where captive monkeys are said to enjoy watching TV during “down time.”

Sharp engages visual media as a means to uncover and decipher the moral logic of an ethics of care directed specifically at highly sentient creatures who serve as human proxies in a range of experimental contexts. Sharp suggests this specialized ethics of animal care materializes Cheryl Mattingly’s notion of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here), where television mediates the complicated boundary of species difference among the simian and human subjects who share laboratory worlds.


Sharp starts by discussing that scientific interest in primate theory of mind in a range of disciplines, especially within the fields of primate behavior, cognitive psychology, and experimental neuroscience. In the United States, chimpanzees are widely accepted as exemplifying “sentience” in non-human species. Television figures prominently within a larger arc of primate welfare in facilitating interspecies encounters within modern laboratory science.

In this paper, Sharp is most concerned with the moral sentiments of human workers who interact with lab-based primates, specifically research macaques. Because of their affective power, animals offer a powerful means by which to access “everyday” or “ordinary” ethics. Monkeys inspire specialized responses among lab personnel, including researchers, lab-based technicians, and animal technicians or “caretakers,” who together consistently underscore these creatures’ evolutionary proximity to us, alongside their being highly “sentient” beings. These understandings have a significant bearing on how personnel introduce, interpret, and modify notions of welfare and care in the laboratory.

As early as the 1930s, animal behaviorists and psychologists showed silent clips from films and cartoons to a variety of primate species to measure their perceptions of and “responsiveness” to “moving pictures.” Yet the choices appear to have been based on various assumptions: that a non-human species might find moving pictures interesting; that at least some primate species were capable of reading these images for what they were; and that visual media might evoke strong emotional responses in a viewer. Conducting various experiments with both still and moving color images that were in or out of focus, researchers showed to a dozen restrained juvenile and adult rhesus macaques 16mm films, such as a caged, female and male pair of rhesus macaques eating, climbing, and threatening a photographer, and a clip from a Woody Woodpecker “Indian Whoopee” cartoon episode.

By the 1950s, these experiments were decisively entrenched in a scientific logic that presumed film might evoke emotional responses in primates, and that they might also offer clues for deciphering human psychology. As such, apes and monkeys could stand in as proxies for human subjects, where visual technologies employed as compelling research tools could effectively reconcile species difference. Over the course of less than a century, television’s value as a research tool in laboratory settings became related to ideas about how best to distract or amuse lab-based primates in nonexperimental contexts, referred to as “down time.”

Sharp states that during laboratory experiments, visual technologies are used as interactive devices where, for example, a monkey works alone at a monitor and solves a sequence of problems where responses are digitally recorded by a researcher and transformed into data. In contrast, within a housing room, visual technology is marked by comparatively passive engagement, where a monitor is mounted nearby to allow monkeys to see and watch TV. Sharp explains that television is a literal manifestation of the moral laboratory when lab personnel must work to establish best practices, set against the unavoidable paradox that they are working with lab-based macaques who are viewed as “neither pets nor wild animals.”

In Moral Laboratories, Cheryl Mattingly argues for the addition of a “first person virtue ethics” in her analyses of the everyday struggles of disempowered people in contexts of unending suffering. As Mattingly explains, even seemingly dull decisions regarding the “care of the intimate other” may bring about ethical dilemmas and an associated complex reasoning. Mattingly uses the concept of “moral laboratory” metaphorically for defining an “imaginative space” of ethical experimentation, impacting possibilities for transforming the self.

Sharp proposes a slight variation, involving the literal understanding of the “moral laboratory” as a way to describe primate research labs in academic neuroscience programs. The presence of lab animals is effective in uncovering the logics of scientific morality. The widespread use of primates in neuroscience comes largely from the deep-seated understanding that they are humans’ closest evolutionary “cousins” and, therefore ideal proxies for humans.

Television’s presence figures importantly in a “first person ethics” among lab personnel, standing out as a specialized welfare practice that demonstrates what Mattingly describes as the “care of the intimate other,” in this instance, across the species divide. With these statements in mind, Sharp probes this moral logic of care, where television demonstrates efforts to provide “a good [laboratory] life” to captive, highly sentient creatures. Television is generally understood as a suitable enrichment strategy for highly sentient creatures who can easily suffer from boredom and succumb to pathological, repetitive behaviors known as stereotypy, withdrawal, forms of self harm, or failure to thrive.

As intelligent creatures, macaques are understood as being “interested” in TV, and staff may spend significant consideration and imagination in trying to determine what makes for effective “monkey TV.” Yet the influence of visual technology in aiding animals to “flourish and thrive” may extend beyond the restrictions of a housing room and include experimental contexts, where television-as-research tool may similarly be described as a form of healthy “engagement” for animals, despite such engagement is also regarded as “work.” As one lab director explained, “lab work [itself is] a form of enrichment” because his macaques so clearly “enjoy” computers, regardless of context.

For Sharp, attention may truly signal interest or curiosity, but it may not necessarily specify pleasure or enjoyment. Furthermore, labs where staff regards television as “enrichment” have monitors engaged with a nonspecific monkey in mind, with the same video loop playing repeatedly throughout the day, week, month, or year. In response, Sharp does not ask what television viewing tells us about monkeys’ preferences, but instead questions what pervasive beliefs and assumptions about television say about lab-based humans’ understandings of subjectivity. Or, what might the supposed primate desire for television say about the morality of interspecies encounters in lab areas?

In conclusion, Sharp states that through an under-theorized theory of mind, television provides a powerful medium for fostering human-monkey relatedness. Television draws monkeys in close with humans while simultaneously ratifying the morality of lab animal “care” and “welfare.” Essentially, television brings them closer to us. Just as television transforms the macaque as “intimate other” into a humanized creature, animal caretakers through a specialized “first person ethics,” are transformed into moral beings as well.

Book Release: “Fat Planet: Obesity, Culture, and Symbolic Body Capital”

This week we are highlighting a recent book release from the University of New Mexico Press entitled Fat Planet: Obesity, Culture, and Symbolic Body Capital (2017), edited by Eileen Anderson-Fye and Alexandra Brewis. As a reminder, in June the CMP blog will be switching to our bi-weekly summer schedule.

Photo via UNM Press

The average size of human bodies all over the world has been steadily rising over recent decades. The total count of people clinically labeled “obese” is now at least three times what it was in 1980. Around the world, governments and other organizations are deploying urgent anti-obesity initiatives. However, one unintended consequence of these efforts to tackle the “obesity epidemic” has been the increasing stigmatization of “fat” people. This rapid proliferation of fat stigma has profound implications for both human suffering and disease. Fat Planet represents a collaborative effort to consider at a global scale what fat stigma is and what it does to people.

Making use of an array of social science perspectives applied in multiple settings, the authors examine the interplay of weight, wealth, history, culture, and meaning to fat and its social rejection. They explore the notion of symbolic body capital — the power of non-fat bodies to do what people need or want. They also investigate how fat stigma relates to other forms of bias and intolerance, such as sexism and racism. In so doing, they illustrate the complex and quickly shifting dynamics in thinking about fat — often considered deeply personal yet powerfully influenced by and influential upon the broader world in which we live. They reveal the profoundly nuanced ways in which people and societies not only tolerate, but even sometimes embrace, new forms of stigma in an increasingly globalized planet.

Chapters include:

  • Making Sense of the New Global Body Norms. Alexandra Brewis
  • From Thin to Fat and Back Again: A Dual Process Model of the Big Body Mass Reversal. Daniel J. Hruschka
  • Managing Body Capital in the Fields of Labor, Sex, and Health. Alexander Edmonds and Ashley Mears
  • Fat and Too Fat: Risk and Protection for Obesity Stigma in Three Countries. Eileen P. Anderson-Fye, Stephanie M. McClure, Maureen Floriano, Arundhati Bharati, Yunzhu Chen, and Caryl James
  • Excess Gaines and Losses: Maternal Obesity, Infant Mortality, and the Biopolitics of Blame. Monica J. Casper
  • Symbolic Body Capitol of an “Other” Kind: African American Females as a Bracketed Subunit in Female Body Valuation. Stephanie M. McClure
  • Fat Is a Linguistic Issue: Discursive Negotiation of Power, Identity, and the Gendered Body among Youth. Nicole L. Taylor
  • Body Size, Social Standing, and Weight Management: The View from Fiji. Anne E. Becker
  • Glocalizing Beauty: Weight and Body Image in the New Middle East. Sarah Trainer
  • Fat Matters: Capitol, Markets, and Morality. Rebecca J. Lester and Eileen Anderson-Fye

For more information, visit the University of New Mexico Press website, available here.


Dr. Eileen Anderson-Fye is a medical and psychological anthropologist, and the founding director of the Medicine, Society, and Culture (MSC) Master’s Degree track in Bioethics at Case Western Reserve University School of Medicine. Drawn to interdisciplinary study as an undergraduate, Dr. Anderson-Fye developed the MSC degree track for students to explore how factors beyond biomedical science contribute to health and wellness. Social and cultural constructs, historical and rhetorical influences, literature, and philosophy all shape perceptions of health, illness, and recovery, which in turn affect choices, beliefs, and behaviors. Those who appreciate this complex and multi-layered interplay will be able to play pivotal roles in enhancing how care is delivered – and the outcomes it yields.

Dr. Anderson-Fye’s perspective on these issues has been informed by extensive research on the mental health and well-being of adolescents and young adults in contexts of socio-cultural change. Her most enduring project is an ongoing longitudinal study of how subjective perceptions of current and future well-being allowed the first mass-educated cohort of Belizean schoolgirls to overcome severe threats to their mental and physical health. More recently, she led a team’s study of the psychiatric medication experiences of undergraduates at North American university campuses, where a mix of quantitative and qualitative methods revealed stark differences between reported and actual usage. Dr. Anderson-Fye is writing a book about the findings and their implications; it is tentatively titled, Young, Educated and Medicated. Dr. Anderson-Fye has an A.B. From Brown University in American Civilization.  She earned her M.Ed. and Ed.D. in Human Development and Psychology from Harvard University. Her training has included work at Harvard Medical School in the Department of Social Medicine and Massachusetts General Hospital, and postdoctoral fellowships in Interdisciplinary Studies of Culture and Neuroscience and Culture, Brain and Development at the Semel Institute for Neuroscience in the David Geffen School of Medicine at UCLA.

Dr. Alexandra Brewis is a President’s Professor and Distinguished Sustainability Scientist at Arizona State University, where she also co-leads the translational Mayo Clinic-ASU Obesity Solutions initiative and serves as the associate vice president of Social Sciences. Her research interests includes how and why effective obesity solutions are undermined by weight stigma, damaging and distressing for millions of people and is rapidly spreading globally.

Dr. Brewis has a PhD in Anthropology from University of Arizona and was an Andrew W. Mellon Foundation postdoctoral fellow in anthropological demography at the Population Studies and Training Center at Brown University. Before joining ASU, she taught at the University of Auckland in New Zealand and University of Georgia. At ASU, Dr. Brewis served as Director of the School of Human Evolution and Social Change from 2009-2017.

Article Highlight: Vol. 41, Issue 1, “‘I Don’t Have Time for an Emotional Life’: Marginalization, Dependency and Melancholic Suspension in Disability”

This week on the blog we are highlighting Brian Watermeyer’s article “I Don’t Have Time for an Emotional Life”: Marginalization, Dependency and Melancholic Suspension in Disability. Watermeyer provides an introduction to key aspects of the social and economic marginalization of the disability minority experienced globally. He then explores and compares the complex debates surrounding materialist and psychological approaches and accounts of racism and disablism, particularly with reference to the place of grief and loss in disability discourse. Finally, Watermeyer considers how Cheng’s engagement with racial melancholia may help illuminate how disability inequality, like that of race, may remain a stubborn reality.

Watermeyer begins by discussing some theoretical orientations of social inequality. In the discipline of disability studies, it is a historical materialist (Marxian) approach which has dominated, with particular attention to psychological aspects of disability oppression. Disablism can be defined as discrimination based on physical, sensory, cognitive, or psychiatric impairment. Combined with critical and liberatory theory of racial inequalities, Watermeyer states it is reasonable to assume that living in the face of discrimination and marginalization will create feelings of grief, withdrawal, and suffering, as harms are sustained at both the physical and psychological levels.

In her book, The Melancholy of Race: Psychoanalysis, Assimilation and Hidden Grief, Ann Cheng (2000) presents a psychological model of racial inequality with loss at its center. For Cheng, racial inequality persists within the United States because it forbids grief. The larger, societal demand for every individual to strive for an ideal cultural whiteness continually pulls individuals away from an emotional center, creating ambivalence, a lack of self-empathy, and distortions of ideology.

Building off of Cheng’s argument, Watermeyer discusses the shared characteristics of racism and disablism. Prejudice and stigma are the ever-present companions of structural inequalities for both forms of disparity. Disabled people, especially those in low income countries, are the most vulnerable of the vulnerable, as most societies are designed with only the needs of the non-disabled majority in mind. There are formidable barriers to housing, transportation, and freedom of movement, as well as exclusion or segregation in education and other public accommodations.

Additionally, Watermeyer states the cultural embeddedness of making sense of disability via a “medical model” has reinforced the marginal position of disabled people. In this institutional view, social disadvantage is understood as a simple consequence of bodily difference or dysfunction, portraying disabled people as “damaged invalids” who are unable to contribute in community life. This view negates any consideration of discrimination’s role in inequality.

While the historical materialist view recognizes the role of biomedicine in justifying the marginalization of disabled people, it is the quantifiable, visible reality of exclusion from the workplace, and other “barriers to participation,” as its primary focus. Yet Watermeyer recognizes the analysis of oppression should not just be in the public, institutional spheres, but should also include private domains. Social exhaustion and scarcity have a psychological component, and it is important to understand the ways in which ongoing assaults on identity limit the imaging of different social organization.

For Watermeyer, there are several problems with describing feelings of damage and tragedy as arising from both congenital and adventitious impairment, with little or no attention to structural or contextual factors. This viewpoint positions impairment of the body as the central disadvantage faced by disabled people, ignoring injustices such as discrimination and rejection. Further, attaching narratives of tragedy to disabled people has been loudly rejected by the international disability movement. According to Kleinman, Das, and Lock (1997), if there is loss or grief in the lives of disabled people, it has to do with social suffering, not bodily “flaws.”

While discussing oppression and melancholia, Watermeyer describes an encounter with “J,” a male psychotherapy client living with tetraplegia (paralysis of the lower limbs and partial paralysis of the upper). A South African man in his mid-twenties, J lived a life of profound structural exclusion, unemployment, physical dependency, a poor social network, and imprisonment in his mother’s residence by poverty and poor public transportation. In his limited engagements with the world, indications that he was “broken” were commonplace.

When questioned about his emotional experience of these circumstances, J’s reply was, “I don’t have time for an emotional life.” At the subjective level, being trapped in an immovable system of structural exclusion meant being equally controlled by an “emotional economy,” with its own rules on what could be felt, loved, hated, or hoped for. In J’s life, these constraints appeared to limit emotional freedom as definitively as unreachable buses limited his movement. Emotional care, guilt, and limited space were the constant followers of his physical dependency, transferring feelings of sadness, frustration, or rage to unconsciousness. Simply, “not having time for an emotional life” meant not having the resources to overcome prohibitions on feelings and expressions of grief.

Melancholic systems deal with difference by maintaining existing racialized and discriminatory structures. This disjuncture produces a detrimental position involving both alienation from one’s emotional self, and experiences in the social world which repeatedly point to one’s failure to assume the ideals which secure real belonging. Watermeyer states that dominant culture presents disabled people with a paradox: while reaffirming the message that the disabled figure is dismal and broken, the world demands that he or she not grieve, as this would be a submission to the passivity, pessimism, and invalid status that pervade the disabled stereotype. As in the case of race, the ruling is “prove to me that you are not what I know you to be.”

Watermeyer’s perspective reframes lives of disabled people as basic to the universal human condition. The stereotype which attaches loss simplistically to impairment is rejected, and replaced by a more nuanced picture of struggle relating to discrimination, structural exclusion, pain, fatigue, and the host of everyday miseries that punctuate any human life.


References Cited:

Cheng, Ann A. (2000) The Melancholy of Race: Psychoanalysis, Assimilation, and Hidden Grief. Berkley: Oxford University Press.

Kleinman, A., V. Das, and M. Lock. (1997) Social Suffering. Berkeley: University of California Press.

From the Archive: “Exposure and Exclusion: Disenfranchised Biological Citizenship among the First-Generation Korean Americans”

This week on the blog we are featuring an article from a past issue of the journal as part of our “From the Archive” series. In this highlight, we explore “Exposure and Exclusion: Disenfranchised Biological Citizenship among the First-Generation Korean Americans” by Taewoo Kim, Charlotte Haney, and Janis Faye Hutchinson, available here. This article was featured in Volume 36, Issue 4 (December 2012).


In the midst of an uncertain future of health insurance in the United States, it is important to reflect on how larger social systems affect individual experiences of health and illness. Our contributing authors at Culture, Medicine, and Psychiatry frequently express the need for ethnographic approaches to healthcare analysis. In this article, the authors documented how the healthcare system in the United States in 2012 disenfranchised those of marginal health insurance status. Based on fieldwork with a highly uninsured and underinsured Korean American population, the authors argued that the vulnerability of these disenfranchised biological citizens is compounded through exposure to health risks and exclusion from essential healthcare.

According to the authors, the first-generation Korean Americans interviewed faced the double burden of increased health risks from long, stressful work hours and lack of access to healthcare due to the prohibitive costs of health insurance for small business owners. Even as their health needs became critical, their insurance status and costly medical bills discouraged them from visiting healthcare institutions.

Based on a multi-sited ethnography of Korean–American communities in Houston, Texas, and Los Angeles, California, this study attempted to describe the condition of marginal insurance in the United States. The authors trace health risks among Korean Americans from “daily life to life in crisis.” By mapping the connections from an unequal social structure where risks are unevenly distributed, to the disproportionate prevalence of disease, the authors discuss the impact of inequality on the bodies of the disenfranchised population.

The authors build off of Nikolas Rose’s term biological citizen, defined as encompassing “all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings.” The authors argued that their participants were left out of such developments and strategies due to the participants’ place in the employment structure and healthcare payment schemes. The high concentration of small business owners among the first-generation Korean Americans led to long work hours in risk-laden conditions as well as high rates of marginal insurance driven by sky-rocketing private health insurance costs. These risks were compounded by limited access to appropriate preventive measures and medical intervention.

This combination of exposure to precarious working conditions and exclusion from healthcare increases Korean Americans’ vulnerability, particularly to chronic illnesses including hypertension, high blood cholesterol, diabetes, and heart disease. These conditions are the bio-devaluation that results from biological disenfranchisement.

Through detailed ethnographic research with uninsured and underinsured Korean Americans working in family-run businesses, the article focused on the daily practice of “doing-without-health,” pushing the discussion of barriers to healthcare-seeking toward an examination of how those barriers cultivate subjectivities of disenfranchised biological citizenship. The authors also describe how such disenfranchisement multiplies the participants’ vulnerabilities by exposing them to disproportionate health risks and excluding them from essential care.

First, the authors examined the daily-lived experience of risk exposure. Social and economic contexts of risk included the uneven distribution of economic activities and opportunities that Korean Americans face after immigration. The authors discussed several circumstances which contributed to social and economic risks, such as institutional barriers which disregarded educational attainments and professional experiences in South Korea, linguistic barriers, already difficult and stratified economics in the United States, stressed relationships with the surrounding communities, and fear of robbery and theft. These factors exposed the Korean American participants to health risks, such as overwork and stress, on a daily basis.

Second, the authors discussed how exclusion from care operated within the studied community settings. Uninsured and underinsured participants experienced discouragement from using healthcare services. A long-term uninsured status and widely circulated stories of financially devastating medical bills create a distance between Korean Americans and healthcare institutions. Underinsured participants similarly encountered healthcare discouragement through high out-of-pocket costs. With tight budgets, underinsured participants feared the high cost of medical care and avoided visiting doctors.

Combined, these factors illuminated the embodiment of the social inequality among uninsured and underinsured Korean Americans; the authors linked exposure to health risks and exclusion from healthcare. Through an ethnographic examination of the daily practice of “doing-without-health” among a marginalized sub-group in society, the authors articulated how disenfranchised biological citizenship goes beyond creating institutional barriers to healthcare and shaping subjectivities of the disenfranchised.

Article Highlight: Vol. 41, Issue 1, “‘Hunger Hurts, but Starving Works.’ The Moral Conversion to Eating Disorders”

This week we’re highlighting Gisella Orsini’s “Hunger Hurts, but Starving Works.” The Moral Conversion to Eating Disorders article. Orsini suggests that eating disorders are the result of moral self-transformative processes. Women in Malta and Italy with anorexia, bulimia, and binge eating disorders are thus actively and deliberately engaged with cultural moral values embodied in thinness and the control of bodily needs and pleasure. Thus, the more control over hunger, the higher the level of satisfaction and the degree of moral conversion achieved.

Orsini begins by discussing the history of eating disorders within the Diagnostic and Statistical Manual of Mental Disorders (DSM), highlighting that the explanations of onset, classification, and treatment has often been, and to a large extent remains, unclear. Yet before the medical category of “eating disorders,” behaviors which would now be considered symptoms of pathology had different meanings, often characterized as holy behavior or as a wonder of nature. Medieval European nuns often adopted strict starvation practices in order to reach unity with Christ. Pre-Victorian and Victorian era “fasting women” were admired by the rest of society and were considered curiosities by scientists and doctors. Orsini narrows the modern gap between the biomedical construction of illness and the self-perception of patients through an understanding of the narratives of people with eating disorders and framing it as a process of self-transformation.

Between 2012 and 2014, Orsini conducted comparative qualitative research in Malta and Italy. Even though the prevalence of eating disorders was relatively similar between the two countries, the social reactions to eating disorders were markedly different. The Italian government considers eating disorders to be a “social epidemic, which leads to serious problems in terms of public health.” Malta, by contrast, has almost no concern with eating disorders at the public level as well as a lack of public and private treatment institutions. Both countries aligned with the international trend of eating disorders being mostly female.

In framing eating disorders as a moral conversion, on the basis of the interview narratives she collected, Orsini suggests that eating disorders could be considered as the body becoming a physical symbol of an attempt to redefine their lives. Yet the biomedical approach views the behavior of people with an eating disorder as stemming from a mental condition. Orsini states, “anorexics, bulimics and binge eaters actively and deliberately adopt behaviors in relation to food and their own bodies in order to morally improve themselves.” All of Orsini’s participants sought to dominate their bodily needs in order to improve themselves morally. Furthermore, all recalled negative moral feelings, such as guilt and shame, when their behavior was not in line with their moral values of purity and control. In this way, moral values became moral imperatives.

Yet not all people with eating disorders reacted to their diagnosis’ pathologization in the same way. Anorexics tended to be the most resistant to their newly achieved satisfactory personhood with illness. Bulimics and people with binge eating disorder, on the other hand, tended to experience relief at being labeled “ill,” identifying more with their condition as a disorder rather than a moral conversation.

Orsini states that although the main objective of people with eating disorders is thinness, this thinness is simply the end result of several behaviors that aim to ameliorate one’s self in highly moral terms. The process of a moral conversion requires an individual to adopt views, attitudes, or patterns of behavior that are generally thought of as morally better than their previous views. Orsini then further divides the three discussed eating disorders into levels of conversion: achieved moral conversion for anorexia nervosa, attempting moral conversion for bulimia nervosa, and rejecting moral conversion for binge eating disorder.

In the case of anorexia nervosa, Orsini presents the circumstances of Elisa, a 28-year-old woman in residential treatment in Italy. Elisa’s narrative of transforming her body from being “sinful and dirty,” to a “pure and sinless body” through her anorexia is an example of an achieved moral conversion. Yet she was forced to abandon her new perspectives and values in order to live. Elisa had to decide if the costs of her anorexic beliefs justified the benefits, leading to a painful moral choice.

For bulimia nervosa, Orsini discusses that people who are diagnosed with bulimia after having had a history with anorexia can be said to have lost the ability to practice the core values associated with anorexia, even though they still consider such values (such as controlling hunger and thinness) to be core values in their lives. Orsini’s participants who were not diagnosed previously with anorexia often spoke of their daily frustrating struggle to control their hunger; while they are unable to totally control their eating, the compensatory behavior of self-induced vomiting, laxative use, or over-exercising was still an attempt at thinness. This continuous attempt to control their hunger, followed by “repairing the damage caused by their moments of weakness,” is an example of how they are attempting moral conversion.

Finally, for Orsini, binge eating disorder is seen as a case of rejecting moral conversion. While the people in Orsini’s research diagnosed with binge eating disorder still described thinness and control over food as a core value in their lives, unlike the anorexics and bulimics, people with binge eating disorder did not believe they deserved to ameliorate themselves. Their self-transformative process can be understood as a form of self-punishment as well as a statement of their perceived failure in being the person they want to be.

Michelle, a 34-year-old Maltese woman, spoke of her body as a sign of failure after gaining a significant amount of weight during and after pregnancy. Orsini states Michelle never referred to her body in aesthetic terms, such as “ugly,” but instead as a mark of her inabilities and moral dissatisfaction. She states, “If I was slimmer, if I am slimmer, I would be a better person” (p. 134). For Michelle, bingeing was a manifestation of her moral failures.

In conclusion, Orsini reiterates that only viewing people with eating disorders as having a physiological or psychological dysfunction underestimates the active role their conditions and cultural meanings of their behaviors. Through her analysis of the narratives of people with an eating disorder in Malta and Italy, she reveals how anorexics, bulimics, and binge eaters deliberately engage in a number of practices aimed at losing weight in order to improve themselves in moral terms. Their actions are further divided into an unofficial moral hierarchy, wherein anorexics embody an ideal moral-selfhood.