illness

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

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

via Columbia University Press website

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

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

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

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

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

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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

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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.

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

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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.

Books for Review: Vol 41, Issue 2

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In our June 2017 issue, we received these two books for review at Culture, Medicine, and Psychiatry. These previews provide a snapshot of recent publications in medical anthropology, global health, and the history of medicine that we’re excited to discuss in our journal and with our followers on social media.

Living Faithfully in an Unjust World: Compassionate Care in Russia (2016)

Melissa L. Caldwell

In this book, Caldwell asks, “What does it mean to be a compassionate, caring person in Russia, which has become a country of stark income inequalities and political restrictions? How might ethics and practices of kindness constitute a mode of civic participation in which “doing good”—helping, caring for, and loving one another in a world marked by many problems and few easy solutions—is a necessary part of being an active citizen?”

Living Faithfully in an Unjust World explores how, following the retreat of the Russian state from social welfare services, Russians’ efforts to “do the right thing” for their communities have forged new modes of social justice and civic engagement. Through vivid ethnography based on twenty years of research within a thriving Moscow-based network of religious and secular charitable service providers, Caldwell examines how community members care for a broad range of Russia’s population, in Moscow and beyond, through programs that range from basic health services to human rights advocacy.

As the experiences of assistance workers, government officials, recipients, and supporters reveal, their work and beliefs are shaped by a practical philosophy of goodness and kindness. Despite the hardships these individuals witness on a regular basis, there is a pervasive sense of optimism that human kindness will prevail over poverty, injury, and injustice. Ultimately, what connects members of this diverse group is a shared belief that caring for others is not simply a practical matter or an idealistic vision but a project of faith and hope. Together care-seekers and care-givers destabilize and remake the meaning of “faith” and “faith-based” by putting into practice a vision of humanitarianism that transcends the boundaries between state and private, religious and secular.

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

PTSD and the Politics of Trauma in Israel: A Nation on the Couch (2017)

Keren Friedman-Peleg

Post-Traumatic Stress Disorder, or PTSD, has long been defined as a mental trauma that solely affects the individual. However, against the backdrop of contemporary Israel, what role do families, health experts, donors, and the national community at large play in interpreting and responding to this individualized trauma?

In PTSD and the Politics of Trauma in Israel, Friedman-Peleg sheds light on a new way of speaking about mental vulnerability and national belonging in contemporary Israel. Based on ethnographic fieldwork conducted at The Israel Center for Victims of Terror and War and The Israel Trauma Coalition between 2004 and 2009, Friedman-Peleg’s rich ethnographic study challenges the traditional and limited definitions of trauma. In doing so, she exposes how these clinical definitions have been transformed into new categories of identity, thereby raising new dynamics of power, as well as new forms of dialogue.

Chapters include:

  1. Birth of Agencies, Birth of an Interpretative Framework
  2. Trauma and Capital: Bearers of Knowledge, Keepers of Cashboxes
  3. Trauma and the Camera: Labeling Stress, Marketing the Fear
  4. They Shoot, Cry and Are Treated: The “Clinical Nucleus” of Trauma among IDF Soldiers
  5. Woman, Man and Disorder: Trauma in the Intimate Sphere of the Family
  6. Wandering PTSD: Ethnic Diversity and At-Risk Groups across the Country
  7. Taking Hold: Resilience Program in the Southern Town of Sderot
  8. Treading Cautiously around Sensitive Clinical and Political Domains

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

University of Washington Today: Q and A with Janelle Taylor

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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”

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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.

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

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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”

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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.

Article Highlight: Vol. 41, Issue 1, “‘They Treat you a Different Way:’ Public Insurance, Stigma, and the Challenge to Quality Health Care”

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This week we are highlighting “They Treat you a Different Way:” Public Insurance, Stigma, and the Challenge to Quality Health Care by Anna C. Martinez-Hume, Allison M. Baker, Hannah S. Bell, Isabel Montemayor, Kristan Elwell, and Linda M. Hunt. The authors argue that stigma is a public health issue which should be addressed in Medicaid policy. Even though Medicaid eligibility is expanding to include more low-income adults, issues within the social context of public insurance and the experience of stigma may result in increased disparities in health care.

In this article, the authors examined the experiences of stigma when using public insurance as described by a group of low-income individuals eligible for Medicaid in Michigan and how such stigma influences their health-seeking behavior. Social scientists have long been concerned with the impacts of stigma on an individual’s social identity. Sources of stigma affecting health care experiences may include race, class, gender, and illness-status, all of which have serious consequences for health status. Underutilized care, delayed care, forgoing tests, infrequent check-ups, and lower quality of life have all been linked to health care stigma.

Patients in this study often reported stigmatization based on having public insurance, or no insurance, and reported feeling ignored, disrespected, or overlooked. As patients experience low satisfaction with their health care providers, the result is often missed follow-up appointments, changes in their providers, and reluctance to access necessary services. The authors discuss that groups who experience stigma in the health care system are most likely to be individuals who enter into the system as already stigmatized patients.

Racial categories within health care structures also distinguish between types of people, often leading providers to unknowingly treat some patients differently than others. The authors discuss how providers are taught through their medical training, published articles, and clinical guidelines to presume racial and ethnic groups share genetic, socio-economic, and cultural characteristics. These assumptions ignore complex social problems and highlight the multidimensional processes of differential treatment in health care.

Understanding the intersectionality of personal attributes, such as race or illness-status, and public insurance status can improve the appreciation for how experiences of stigma are compounded. Clinical encounters which manifest stigma have important health consequences for patients.

From their research, the authors explore participants’ stories about being treated differently while receiving Medicaid coverage and focused on two central stigma themes: receiving poor quality care, and experiencing negative interpersonal interactions.

One example of receiving rushed or poor quality of care comes from a woman named Destiny. She recounted her experience of taking her son to a clinic:

“The wait was an hour long…and then they were very quick with us, they didn’t take their time to ask questions…It’s like they weren’t patients, they were just another number, you know, to get them out the door, and the next one in… [The doctor] just sent us on our way without even fully understanding what the problem was… [My son] had a really bad cold or bronchitis and I told the doctor before he’s allergic to amoxicillin, penicillin, and he actually wrote him an amoxicillin script. It was in his file. He didn’t even read through his file.”

Mistreatment by staff or health care personnel based on public insurance status included shaming, being disrespected or ignored, not being believed, or being patronized. Shannon described her negative interpersonal interactions:

“When we had Blue Cross and Blue Shield, we were treated much differently even by the receptionist. People treat you differently. They look at you differently… I sometimes don’t want to pull out my green [Medicaid] card when I’m in the line at the pharmacy…the lady in front of me has a Blue Cross Blue Shield card and the way they talked to her or interact with her…is much different than when I roll up with my green card and my cardboard [Medicaid health plan] card. It’s ‘here, sign this, birth date, co-pay, have a great day.’”

These stigmatized experiences often lead to discontinuity of care and even resistance to returning to these facilities for care. The authors consider an especially concerning story from Carrie, whose stigma experience is amplified by her HIV-positive status:

“My doctor asked me to swab myself one time when I was being tested for STDs… How the hell can you work in infectious disease and you don’t want to swab me? Like okay, I can do that. But how humiliating is that? I’m switching doctors…I just don’t want to go. I want to be able to sit down and talk to somebody about what’s going on with me because I’ve been missing medicine, and that’s serious. It’s a serious thing, and they’re so callous to it.”

As the authors’ research elaborates, Medicaid use has long carried a stigma in the United States as a symbol of waste and excess of the welfare system. This carries with it a set of assumptions about the individuals who rely on these resources. The social construction of low-income individuals who enroll in Medicaid characterizes these people as lazy, willingly unemployed, less educated, and ultimately, undeserving. Inequitable health care received under the stigma of public insurance is fundamentally a public health issue, creating further disadvantages for the health of already vulnerable people.