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.

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

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.

SfAA 2017 Conference Feature Part 2: “Experiences and Identity in Long-term and Chronic Illnesses”

This week on the blog we are continuing our feature of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Karen Dyer and Marlaine Gray’s presentations. Part one of this feature is available here.

Karen Dyer (VCU) – Examining Health and Illness after Treatment for Colorectal Cancer: Long-term Healthcare Needs and Quality of Life

From her research, Dyer discusses the attachments formed between people with a history of colorectal cancer and their oncology team, which stems from both a fear of recurrence of illness and an especially strong emotional bond forged through mutual experiencing of a life-threatening disease. Dyer also discusses the consequences of the ambiguity of cancer follow-up care. Questions frequently include, who is the best doctor to see? If multiple care providers are seen by people with a history of colorectal cancer, will tests will be duplicated or even missed? Which emerging symptoms are serious enough to warrant further investigation? This continuing surveillance of a “survivor’s” body encompasses many medical repercussions from the treatment of cancer and reality of recurrence risk, often transforming people into life-long patients.

Dyer interviewed 30 participants in Virginia who had a history of colorectal cancer and were at least five years post-treatment. As this category of people with a history of colorectal cancer increases, there is a growing number of individuals using, and in need of, follow-up care. Yet this need is contrasted against a shortage of oncologists and primary care providers who are able to treat this group of people. Dyer asks, how do we treat and provide adequate long-term care to people for years, possibly for the rest of their lives, in a way that is not going to compromise or strain the oncology clinics? What are the physical, social, and emotional needs of longer-term colorectal cancer “survivors,” and how does their cancer experience impact these needs?

Dyer explains that most participants with a history of colorectal cancer did see an oncology team regularly for a follow-up care. For this group, as with other groups with specific types of cancer histories, the five-year mark is a critical period where individuals get discharged from monitoring and care because the risk of recurrence is statistically very low. Yet from Dyer’s research, a large number of her participants were planning to continue to see their oncology team after they had passed the five-year mark. Most had no formal “survivorship” care plan, and in general, there was not an understanding of what future care would entail.

Many individuals with a history of colorectal cancer continue to see their oncology team because of the intense bond and emotional connection they have developed. Going through a serious life-threatening experience created an attachment and deep sense of friendship. Dyer discusses that the oncology team fills a role of social friendship and support during the cancer experience when many other relationships may change. For Dyer’s participants, the oncology team has seen them in their “worst moments” and guided them through this demanding treatment. This type of connection and support is difficult to abandon. One woman said, “I need my security blanket, and yeah, I guess that’s what Dr. L [her oncologist] is.” This sense of being cared for and understood will be greatly missed. Any kind of care planning needs to take that strength of bond and trust into account.

Ambiguity surrounding cancer follow-up care is also an important dimension of Dyer’s work. Many participants report difficulty several years post-treatment when symptoms or health problems manifest in uncertain ways. Participants report difficulties distinguishing between normal aging processes, potential non-cancer related problems such as diabetes, or potential cancer-related, or cancer treatment-related, effects. Dyer uses fatigue as an example. Many participants spoke about being considerably more fatigued than they usually were. While this fatigue could be part of a normal aging process, it could also signal a variety of diseases or indicate the arrival of a cancer recurrence. Ambiguous symptoms such as fatigue lead to a high stakes, complex decision-making process.

People experiencing these types of indistinct symptoms often express an uncertainty about who they should contact with questions and when. Participants frequently did not want to “bother” their oncologist or be perceived as overreacting. Self-diagnosis and self-assessments of the level of seriousness of these symptoms were often the responses.


Marlaine Gray (GHC) – Shouldn’t We Be Listening?: Using Twitter for Recruitment, Patient Engagement, and Data Collection in a Study about How Young Adults with End Stage Cancer Make Medical Decisions

Gray begins by discussing research methodological complications when researching young people with metastatic cancer who are geographically spread all across the United States. It can be difficult to find and access this understudied population. Gray also discusses the sensitive nature of the topic is often compounded by time constraints; asking a patient for an hour of their time as part of an interview is difficult when that individual may not have a lot of time left.

Using an already active Twitter community, Gray investigated how young adults with metastatic cancer made medical decisions and whether or not their care matched their ultimate goals. The research was called The Clare Project, named after and featuring a personal story of metastatic cancer. The intention was to understand what these patients wanted for their remaining life and quality of life and translate those goals back into the medical discourse in order to match up treatments. Most participants wanted more quality time with their family, yet they were often being advised to get surgeries. Gray explains this disjunction can be problematic since metastatic cancer patients may never return home from the hospital after these types of surgeries, or they be unable to recover completely and be unable to fully engage with their families again.

Twitter became a way to contact people who were already publically speaking about their cancer experiences. The population of young people online is very active in seeking treatment, finding other patients to connect with, and finding out what the treatments are like. While there are also blogs, threads like Reddit, Facebook groups and pages, and other online message boards, Twitter emerged as the most successful way of communicating with this population. People are online constantly to discuss their cancer experiences.

The metastatic cancer Twitter community uses hashtags such as #mayacc (metastatic adolescent and young adult cancer community), #hpm (hospice and palliative medicine), or #metsmonday, where people with metastatic cancer post about their experiences on Monday. After launching their call for recruitment on Twitter, the Clare Project (Twitter page available here) achieved 200% of their recruitment goal within 24 hours. By using established hashtags and following prominent community members, Gray was able to reach an extensive participant audience.

Adolescent and young adult cancer patients are already actively using social media, many joining Twitter after their diagnosis. Twitter becomes a means of social connection. Gray articulates people are using Twitter to discuss decisions they have to make surrounding their metastatic cancer treatments. Even though patients talk with their doctors and family members, they are using the Twitter support groups to find out what the treatment experiences are. It is these treatment narratives from fellow metastatic cancer sufferers which holds more decision-making weight. Some of these decisions are very high stakes and are based on their peer, rather than medical, advice.

Accessing the first-hand expertise of other patients is labeled as a different kind of expertise than they can get from the medical community. Additionally, for side effects, participants express that doctors can tell them what the treatment is, but their fellow patients will express what the treatment is like and how to manage it. This social support is crucial when participants often do not know anyone else with these types of cancer.

Gray also discusses a kind of “legacy activism,” where people would know they were terminal with few options in their own treatment, but they wanted to advocate for more research funding and attention to metastatic cancer. Social media became a way to engage in social activism. Even though people could not physically go to advocacy events, they could virtually participate from their bedrooms and still spread their message. Through Twitter, people can participate in research and campaigning who would otherwise be unable to do so.