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.

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.

Message from the Society for Applied Anthropology 2017 Annual Meeting

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“Like the roads to Rome, all trails lead to Santa Fe” (Ruth Laughlin, Caballeros, 1931)

The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the Society for Applied Anthropology 2017 Annual Meeting in Santa Fe, New Mexico. This year’s meeting will be held March 28th – April 1st, with session listings and other helpful information available here. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting.

This year’s theme is “Trails, Traditions, and New Directions,” embracing the Santa Fe location as a place steeped in centuries of traditions, where Native histories reach back 10,000 years and follow paths through time and across geographical space. Metaphorically, this theme highlights the importance of understanding the history and intended destination of those “theoretical trails” that we follow when engaging our community partners, methodology, and active interpretations. Presentations that approach current issues from a historical perspective—including health disparities, energy and climate change, interpreting culture—or any of our broad concerns are encouraged, as is work that critically examines the motivations that have guided social science research and practice in the past.

Highlights from this conference will be featured on the blog next week.

Best wishes,

The CMP Editorial Team

Article Highlight: Vol. 41, Issue 1, “Innocent or Intentional?: Interpreting Oppositional Defiant Disorder in a Preschool Mental Health Clinic”

To begin article highlights from our latest edition of Culture, Medicine, and Psychiatry (Vol. 41, Iss. 1), this week we are featuring Christine El Ouardani’s Innocent or Intentional?: Interpreting Oppositional Defiant Disorder in a Preschool Mental Health Clinic. This article examines contradictions clinicians face when attempting to identify and interpret “intentionality” in young children with oppositional defiant disorder (ODD). El Ouardani argues that conceptualizing intentionality as a developmental, interpersonal process may help to make sense of the multiple discourses and practices clinicians use to try to reconcile the contradictions inherent in diagnosing ODD.

El Ouardani begins by introducing “Carla,” a three-year-old who arrived for evaluation and clinical diagnostic determination at the Preschool Behavior Disorder Clinic (PBDC). At first Carla appears as any typical preschooler, energetic and affectionate, but the care team quickly learns she would frequently have violent outbursts and tantrums, lashing out at her family members, other children, or even nearby animals. This type of aggressive, disruptive behavior represents the main reason for the referral of preschoolers to mental health clinics. Early intervention into and treatment of such behaviors is thus of great interest to researchers and clinicians in the field of child mental health care in hopes of helping the young children adapt and cope with life more effectively and prevent the development of later, more destructive behaviors.

El Ouardani discusses that many of the children seen in the PBDC were given a diagnosis of oppositional defiant disorder (ODD), defined in the Diagnostic and Statistical Manual IV (DSM-IV) as “a recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures that persists for at least 6 months” that impairs a child’s social and/or academic functioning. Yet with very young, preschool-aged children, the diagnosis is controversial. Many children displaying aggressive behavior come from chaotic or otherwise problematic social environments in which this kind of behavior is a reasonable reaction. El Ouardani states that clinicians “must reconcile their characterization of disruptive behavior as a matter of ‘self,’ with the social environments that seem to be producing this kind of behavior.” El Ouardani also draws attention to the values and assumptions of current treatment models and diagnostic procedures. These modules are often based on white, middle-class norms of a “proper” family, moral assumptions of how parents should discipline their children, and the assumed role of a child in social institutions. Many patients at the PBDC did not fall into those characterizations; the reality of their lives are much different.

Moving to a discussion of agency and intentionality, El Ouardani then examines the biomedical, disease model of mental illness, which attempts to remove the blame for the illness from the individual. “Ideologically, then, those afflicted with mental disorders bear no responsibility for the behaviors that directly result from their disorders,” El Ouardani writes, since the biological processes of mental illness are taken out of the patient’s control. Thus, ODD as a category defined by “intentional” defiance conflicts with the disease model of mental illness. “A central concern of psychiatric therapeutics is to motivate and use the intentionality of a patient to regain control over the self.” Yet the idea that preschool-aged children are fully capable of acting with this type of intention, and possess the capacity to do so, is disputed. Therefore clinicians diagnosing a young child with ODD are forced to face the disparities between what is out of the child’s control, and what is the “will” of the child.

While discussing the diagnostic criteria for ODD as described in the DSM-IV, El Ouardani emphasizes the criteria for an ODD diagnosis requires the child to be aware of his or her own behavior and is purposely trying to upset or defy the person with whom they are interacting. From this criteria, ODD-labeled children are manipulative and spiteful, qualities that require a degree of intentional malice and deception. These characteristics are not thought to be present in other kinds of childhood mental disorders, such as depression, anxiety, neurodevelopmental disorders, and attention-deficit hyperactivity disorder (ADHD). Clinicians also attribute ODD children with controlling their behavior to influence “weaker” adults, depicting these children as culpable and intentional in their attempts to “confuse and subvert the efforts of their caretakers who are trying to control their behavior.”

El Ouardani discuses that determining intentionality is a complex process, especially because of a child’s limited verbal capacity for expressing internal states. “In order to identify intentional defiance and diagnose ODD, clinicians had to delineate authentic displays of emotion from those that are inauthentic and manipulative.” El Ouardani explains that nuanced, intersubjective exchanges between the children and the clinicians are not captured within the DSM-IV diagnosis. Clinicians often feel frustrated when they perceive a child is trying to manipulate them. This can be compared to clinicians stating “that they feel bad for children with depressive symptoms. They theorized that disruptive behavior in depressed children is a way to cope with internal pain.” This difference means the clinicians feel less personally attacked by children without the ODD diagnosis, becoming less frustrated. Further, by diagnosing a child with multiple disorders the clinicians can discursively split the child’s “self” into different intentional and non-intentional parts. However, this leads to ODD being categorized as a feature of the individual’s character, who that child is as an individual, rather than as a biological disease.

Explanations for why a particular child’s behavior were not always attended to within the PBDC. “Clinicians tended to rely upon the widely accepted idea that behavior and psychopathology is a result of interactions between biological temperament and the social environment. According to this model of developmental psychopathology, innate temperament interacts with problematic interpersonal relationships and chaotic household environments, causing the child to react to these negative circumstances with disruptive behavior.” Yet this strategy still leaves ambiguities over etiology and treatment.

El Ouardani concludes her article with a discussion of the treatment modality. Clinicians regularly spend the majority of the treatment focused on teaching caretakers how to more effectively discipline and relate to the children. The clinicians primarily focus on a lack of consistency in discipline and structure in both interactions and routines, thus, if the caretakers correctly implement strategic routines, the child will then change their behavior over time. “However, clinicians also informally acknowledged these techniques, which took time and energy that many of the caretakers coming from stressful, low-income, single-caretaker families did not necessarily have.”


Dr. Christine El Ouardani is an Assistant Professor in the Department of Human Development at California State University, Long Beach. She is a cultural, medical, and psychological anthropologist who focuses on the anthropology of childhood and lifecourse in Morocco and in North America. El Ouardani’s current book project, Discipline and Development: Negotiating Childhood, Authority, and Violence in Rural Morocco, examines the everyday lives of children and youth in a Moroccan village as they move through their families, classrooms, and medical clinics. She analyzes disciplinary interactions between children and caretakers in their extended families and local schools that were often both violent and playful, demonstrating how local conceptions of authority, care, pain, and violence are constructed and enacted in everyday life at different points throughout childhood, and in different institutions.  El Ouardani shows how examining the nuances of child socialization practices over time and children’s roles in family and community life provides a sharp lens through which to consider larger-scale political, economic, and social change, in this case, contested norms of authority and violence in Moroccan families. For more information, visit her information page on the Department of Human Development, California State Universtity, Long Beach, available here.

 

Interview: Jonathan Sadowsky and “Electroconvulsive Therapy in America”

9781138696969This week on the blog we’re highlighting an interview with Dr. Jonathan Sadowsky about his new book Electroconvulsive Therapy in America: The Anatomy of a Medical Controversy, released November 2016 by Routledge. The book (available here) follows the American history of one of the most controversial procedures in medicine, electroconvulsive therapy (ECT), and seeks to provide an explanation of why it has been so controversial, juxtaposing evidence from clinical science, personal memoir, and popular culture. ECT is widely demonized or idealized. Some detractors consider its very use to be a human rights violation, while some promoters depict it as a miracle, as the “penicillin of psychiatry.” Sadowsky contextualizes the controversies about ECT, instead of simply engaging in them, making the history of ECT more richly revealing of wider changes in culture and medicine. He shows that the application of electricity to the brain to treat illness is not only a physiological event, but also one embedded in culturally patterned beliefs about the human body, the meaning of sickness, and medical authority.

Dr. Sadowsky is the Theodore J. Castele Professor of Medical History at Case Western Reserve University in Cleveland, OH, the Associate Director of Medical Humanities and Social Medicine, the Medical Humanities and Social Medicine Initiative co-founder, the Associate Director of Medicine, Society, and Culture in the Bioethics department of the Case Western Reserve University School of Medicine, and on the Editorial Board here at Culture, Medicine, and Psychiatry. Sadowsky’s research concentrates largely on the history of medicine and psychiatry in Africa and the United States. His previous publications include Imperial Bedlam: Institutions of Madness in Colonial Southwest Nigeria (1999), available here from the University of California Press.

From all of us at CMP, we hope you enjoy our new interview category!

  1. For someone who is thinking about reading your book or about to start, is there anything you would like them to know beforehand?

I would urge everyone to understand that not everybody’s experience of a medical therapy is the same. People should be careful not to generalize from experiences they’ve had, or that loved ones have had, and assume everyone has had the same experience. People who’ve had bad experiences with ECT have criticized me for to wanting to pay attention to the voices of people who’ve had good experiences, and people who’ve have good experiences have wanted to say “oh sure that might have been true in the 1950s but everything’s fine now.” ECT has a complicated story. I have met people who have told me that this treatment saved their lives and that it did so with either none or only the most mild of adverse effects. Those people are very concerned to make sure that the therapy gets represented in positive light because there are so many negative depictions. At the same time I’ve heard from and spoken to people who say they’ve lost 20 points off their IQ after having this treatment, or who had huge gaps in memory, or that they know somebody who had killed themselves after an ECT treatment. And what I find a little bit puzzling still after all these years of working on this book, is the way people are so unwilling to see that other people might have had a different experience than their own. But it’s my feeling as a social and cultural historian that it’s my responsibility to take into account all voices. So that’s the main thing that I want people to know and think about, that experiences of this treatment do vary and people shouldn’t be too quick to generalize from their own experience.

  1. How did you become interested in ECT?

I was already several years into my career as a historian of medicine, and in particular psychiatry, and had no knowledge of the treatment other than the images that many of us have from movies like One Flew Over the Cuckoo’s Nest. Images that it was a highly frightening and abusive treatment. I was a well-trained student of medicine and psychiatry and I didn’t know anything more than that. And then I began to hear stories, both from patients and from clinicians, about it being a valuable treatment and that was just so intriguing to me. So I began to look at some of the clinical literature and it was represented in almost completely the opposite way, as this safe, effective, humane treatment that’s been unfairly stigmatized. I felt like these were two completely distinct realities. It wasn’t so much that I wanted to reconcile them, but I just wanted to understand how views of this treatment became so bifurcated. And that became the central goal of the project: to understand why it became a controversy and have such strongly held opinions on either side.

  1. What did you find most exciting to research and write about?

I worked on this project for a long time and one of the things that sustained me was that there are so many different angles to it. I was interested in learning about how it was used to treat homosexuals in 1950s, to see what the reaction of the psychoanalytic community was, and how it figured as a symbol for all that was worst in psychiatry in the antipsychiatry moment. And then there were all the debates going back to the inception of the treatment, ongoing continual debates about the extent of memory loss. Is it a serious problem? Is it a rare problem? These debates are still raging. All of this I found so intriguing. The history of ECT is also replete with ironies. Such as the irony that it was developed initially as a treatment for schizophrenia based on a hypothesis that schizophrenia has an inverse relationship with epilepsy. That hypothesis is no longer even believed in, and schizophrenia is not the main indication anymore, and yet it’s effective. That’s so weird and so seemly random! Another irony is that this treatment which become an icon for frightening medical treatment, and became almost like people’s haunting nightmare of how medicine could abuse you if you came into its clutches, was initially developed as a way to try to create a safer, less frightening treatment than chemical convulsive therapy. So it’s these layers of irony that I just found so interesting and kept me intrigued in the book.

  1. Did you come across anything unexpected?

Yes, I did come across things that were unexpected. I found the gender politics to be very elusive. I found very little evidence for the idea that women were given ECT for simply protesting against their social role as housewives, which was promoted in another book on ECT. But it does appear likely that over the course of the treatment’s history more women have gotten it than men, and there is likely a gender politics to this. Minimally it may mean simply that more women are getting diagnosed with depression, and that’s the main indication. And we know that. The diagnosis of depression has predominated among women. There is a darker possibility, which is that women’s cognitive abilities haven’t been as valued, and so doctors have been more willing to use a treatment that might damage cognitive abilities on women than they were on men. I didn’t see any proof for that. But I think there were suggestive circumstances that might indicate that that played a role. In many realms of medicine, and this has been really well documented by historians, anthropologists, and sociologists of medicine, women’s complaints about medical treatments are more quickly dismissed than men’s complaints. So it’s quite possible that some of the complaints about memory loss, which have persisted throughout the history of this treatment, have been taken less seriously because they were so often voiced by women. I’m not arguing that women had more memory loss than men, but if they predominated in the treatment, and there were complaints about memory loss, it is plausible to suggest that perhaps there has been too much dismissal. I didn’t have evidence such as clearly sexist language in clinical reports that would strengthen a speculation like that, but one thing I do argue in the book is that the history of ECT is filled with doctors dismissing patient complaints of adverse effects. There are a number of ECT providers now, however, who are trying to be very sensitive to these complaints about memory and cognitive deficits following the treatment, but there still exists in clinical manuals the claim that serious memory problems are extremely rare, and that rarity really hasn’t been proven. So it remains a problem. The history of ECT treatment has shown a tendency to dismiss patient complaints about adverse effects, and this has not served anyone well. If anything, the tendency to dismiss complaints has worsened the stigma attached to the treatment. It’s understandable that some clinicians might feel some defensiveness for a treatment they feel is helpful and safe, but the dismissal of complaints of adverse effects has led to embittered patients and worsened the stigma. In a recent piece in The Conversation (available here), I argued that if we wanted to spell the stigma attached to ECT, it’s going to take more than attesting to its therapeutic efficacy. It’s going to mean we have to reconcile with its full costs.

  1. Why was it important for you to try and remain neutral and not argue for or against ECT?

I’m not trying to presume objectivity. Everyone has a point of view. But I thought I could tell a more interesting story by taking a step back and making the controversy itself my study rather than becoming a disputant in the controversy. There’s some precedent for this. Didier Fassin, an anthropologist, did a book on AIDS in South Africa, When Bodies Remember (available here), in which he did the same thing; he tried to look at the structure of the controversy. He was trying to understand the medical controversy over HIV as an anthropologist, even though he did actually side more with one than the other. But I do argue in the book there are good reasons to attest to efficacy of ECT and it is a valuable part of psychiatry’s repertoire, that it has a place in medicine. But I also argue that there were good grounds for people to contest it and have fear of the treatment. I really try to resist the view, which is very common in clinical literature on ECT, that opposition to ECT is irrational. There are rational reasons for the resistance rooted in some of its historical uses, some of which were abusive, and rooted in the experiences of adverse effects. At the end of the book I lay it all out and I say exactly what I think about ECT after trying to look at it from a step back. I think it’s an invaluable part of psychiatry and could be very useful for many people. But I don’t think it should be used as a first or second resort; other things should be tried first because there are risks. I’m glad it’s there if I should ever need it, but I hope I never need it.

  1. Would ECT be perceived differently if it didn’t treat the brain but some other organ?

Probably. In our society now, more than any other organ your brain is you. It is the seed of the self in our self-conception. I would go beyond that. The side effects do occur, without making any kind of representation about how common these problems are, but at least some people do experience permanent memory losses. I used a lot of patient memoirs in the chapter on memory as my source material. And as one of the memoirists wrote: We are our pasts. You lose your memory it’s like you lose a part of yourself. I think in some ways people feel they lose a part of themselves if they lose their memories more than even if they were to lose a limb. Losing a limb is very traumatic, I don’t mean to minimize that. But in a way, you lose your leg and you say “I lost my leg.” It’s something that belongs to you, but it isn’t you in the same way that maybe you feel your memories are you. Memories are not just something that you have, they’re something that you are.

I think ECT is a treatment for the very ill and as a society we do generally accept that treatments for the very ill sometimes involve radical interventions. Chemotherapy for cancers for example. Most of us are glad we have it, and there isn’t a large anti-chemotherapy movement. My leading theory for why ECT treatment occasions this kind of resistance is because of depression’s uncertain status as illness. No one disagrees that cancer is an illness. When you have cancer you accept that you need surgery or radiation or chemotherapy. These are things that you normally wouldn’t do to your body if you were healthy and you didn’t need them. Cancer is clearly different from normal. But depression has this ambiguous status for two reasons. It is an ambiguous word in the English language because it refers both to an illness which can be extremely severe, yet it also refers to a mood that’s normal and that everybody at some point in their lives gets a little bit depressed. We might have disagreements about how long it has to go on and how severe it has to be to be considered an illness. But it becomes something different when we call it an illness. Secondly why I think depression’s status is a bit uncertain, is that there continue to be people who reject medical models for what we call mental illness altogether. Some might believe what people need is talk therapy and they shouldn’t have drugs or shock therapies or anything like that. Some might believe that they don’t need any treatment at all; they might want to de-medicalize the entire thing. For example, for something to qualify as disease, there has to be some kind of lesion, or something physical that can be identified. Since we don’t have the means to do that with depression, it should be removed from the medical realm. I argue against this view. The idea that there has to be some kind of visual marker is arbitrary. I do think what we consider an illness is a social decision. But if you look at it historically and anthropologically, the idea that things we call madness are medical problems is pretty widespread. And in some ways having to have something be visually identifiable is buying into a lot of biomedical hegemony. I just don’t see why that should be the criteria for illness. Ultimately it’s a philosophical question. Most people in our society do accept that severe depression actually constitutes an illness category, but I think these kinds of ambiguities leave people unsure whether this is something worthy of very strong medicine. ECT is strong medicine. It’s a big decision to undergo ECT and it’s the right decision for some people. It’s a decision that shouldn’t be made lightly and shouldn’t be treated like a trip to the dentist.

  1. Is there anything else you want to add?

I was really gratified by the number of anthropologists who read and used my first book on insanity in Nigeria, Imperial Bedlam (available here), and I would be thrilled if anthropologists gave this book the same attention. And I’d also like to add that Routledge says there will probably be a paperback within the next year and a half.

Article Highlight: Vol 40 Issue 4, Media Representations of Opioid Misuse

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The December 2016 issue of Culture, Medicine & Psychiatry is now available here. In this series of article highlights, we will explore publications included in the latest issue. This week, we present a highlight on Julie Netherland and Helena B. Hansen’s “The War on Drugs That Wasn’t: Wasted Whiteness, ‘Dirty Doctors,’ and Race in Media Coverage
of Prescription Opioid Misuse.” 
The article is accessible in full here.

The authors open their discussion by remarking that the media in the United States has increasingly honed in on heroin and opioid use and misuse by white individuals, particularly featuring stories like that of actor Philip Seymour Hoffman. However, throughout these articles, race is typically not mentioned in conjunction with white opioid users. At the same time, the media has historically depicted drug users as “black and brown,” and demonized these individuals as criminals whose drug use behaviors should be heavily policed.

Thus, the authors assert that there is a “narcotic apartheid” in the media, in which white drug users are insulated from the racist narratives that are attached to opioid misuse amongst non-white individuals. Coded language is typically used to delineate users by race: for instance, using “suburban” or “rural” to refer to white opioid users versus “urban” to indicate non-white users. Classist undertones also shape these narratives, as rural methamphetamine users are derided as ‘hillbillies’ who threaten the moralized order of “whiteness” as suburban and middle class. The type of drugs themselves have taken on racist and classist meanings, such that prescription drug misuse (often ascribed to wealthier, white individuals) is under-prosecuted compared to the use of methamphetamine (poorer, white individuals) and crack cocaine (people of color.)

Despite this, the authors state, it is the racist narrative that remains most prominent in media accounts. Through systematic coding and analysis, Netherland and Hansen found that middle-class white drug users are almost universally characterized in news stories as having “wasted” potential and being “victims” of a challenging climate of drug misuse. They also discovered that stories about drug misuse amongst people of color was not viewed as “newsworthy.” When it was reported, articles focused largely on arrests made or on convictions of drug-related crimes, or on the networks that linked drugs from black and Latina communities to white individuals in the suburbs. In the stories of white opioid users, the articles shifted blame away from the individuals, suggesting they did not ‘intend’ to become addicted. When discussing how to address white drug misuse, the articles most frequently turned to physicians’ prescription practices and the threat of over-prescription. Thus, the solution proposed entails greater regulation of prescription habits: again, beyond the level of the individual user.

Articles on opioid use amongst predominantly non-white, “urban” populations overwhelmingly suggested increased “criminal justice involvement” as the most appropriate response. These articles tended not to craft the stories of non-white opioid users as tragic or accidental. This centralized blame for addiction on non-white opioid users, whereas as noted before, white opioid users tended not to be blamed for their behavior. Further deepening these racist undertones was that the “dirty doctors” (those willing to prescribe opioids to predominantly white patients) reported on in the news were often themselves people of color or immigrants.

The authors conclude that characterizations of opioid news articles as “color-blind” due to the inclusion of stories on white users is misleading. While they agree that the representations of white opioid users demonstrates the impact of drug misuse across racial boundaries, there remains coded language that systematically disparages and marginalizes people of color who use these substances. Netherland and Hansen state that “in short, the problem of race and opioids cannot stop with expansion of access to treatment. Clinicians and health advocates have to address institutional racism, as reflected in media coverage of inner city heroin use versus the prescription opioid epidemic, if they want to dismantle racial exclusions in drug interventions” (page 680.)

Article Highlight: Vol 40 Issue 4, Social Withdrawal in Japan

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The December 2016 issue of Culture, Medicine & Psychiatry is now available here. In this series of article highlights, we will explore publications included in the latest issue. This week, we present a highlight on Ellen Rubinstein’s article “Emplotting Hikikomori: Japanese Parents’ Narratives of Social Withdrawal” (which you can access here.) Rubinstein observes that there has been a flurry of public attention to hikikomori, a socio-medical condition typically experienced by young people that is characterized by increasing, marked social withdrawal.

Rubinstein notes that though there is a perception of hikikomori as a condition of isolation, parents of “hikikomori children” often crafted narratives about their children’s illness that suggested it had discernible stages, signs of progress, and possibility of recovery. These narratives engaged parents in the present, facilitating connectedness between hikikomori children and their families, and thus challenging the assumption that hikikomori is a condition of perpetual or crippling isolation. For instance, some parents at a support group for hikikomori children and their families stated that their children were more mature than others, as their time away from other people encouraged them to be meditative and thoughtful.

One mother, named Kawano-san, first described her son’s hikimori as a process of productive, but not permanent, isolation in an interview with Rubinstein. Kawano-san said that her son’s withdrawal might lend him an opportunity to step away from the social world, assess his future, and prepare for college after initially failing to pass university entrance exams. She felt certain that this period would be one of reflection and reassessment, before the son eventually entered university. Kawano-san also criticized the expectation amongst many Japanese families that children should be extroverted and talkative, instead saying that her son was not pathologically isolated but simply different. Eight months after this initial interview, Kawano-san was interviewed for the second time about her son’s condition. The son had not entered college as Kawano-san expected, but the mother had readjusted her narrative such that she began to acknowledge that path might not be viable for her son. She instead noted that her son could have a disability, or that he simply needed more time to process his feelings. Kawano-san ultimately accepted that her initial expectations did not match her son’s experience, and began to try new approaches to her son’s condition: like encouraging her husband and daughter to write birthday messages to him that might make him feel more welcomed and included in their family unit.

Rubinstein examines similar cases to Kawano-san and her son, finding that many families engaged in a process of narrative emplotment and un-emplotment of their children’s hikikomori. Their narratives thereby gave order or meaning to what otherwise seemed like an ongoing and static psychological condition. Alternatively, they situated their children’s experiences in other contexts: such as expected developmental and social growth, and the efficacy of biomedical interventions or support groups for the condition. Parents of hikikomori children were not inactive bystanders, but rather active interpreters of their children’s experiences and advocates of their unique individual needs. The parents learned to read their children’s condition and support them accordingly, complicating the notion that hikikomori is solely about individual isolation or inaction.

Message from the AAA 2016 Meeting

 

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via Wikimedia Commons

The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the American Anthropological Association 2016 Meeting in Minneapolis, Minnesota. This year’s meeting will be held November 16th-20th, with session listings and other helpful information available here. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting. As a reminder, we continue to accept guest blog submissions on topics spanning cultural medical anthropology and related disciplines in the social sciences and medical humanities.

Consider submitting an abbreviated version of your AAA conference presentation as a guest blog, or write a commentary on one of the keynote speeches at the event. We look forward to sharing the work and research of our readers with our colleagues on the blog! If you are interested in submitting a guest blog, please contact social media editor Julia Knopes at jcb193@case.edu for details.

As a reminder, there will be no new blog entry posted next Wednesday, November 23rd 2016 in light of the upcoming holiday week.

Best wishes,

The CMP Editorial Team

AAA 2016 Session Highlights: Part 2, Discoveries

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Image via AAA Website

This is the second in a two-part series spotlighting sessions in medical anthropology at the upcoming 2016 Annual Meeting of the American Anthropological Association (AAA) in Minneapolis, Minnesota. In this second installment, we present a selection of sessions on the theme of “discoveries.” For more information about this year’s meeting, click this link.


Sessions on “Discoveries”: New approaches to the anthropological study of medicine and medical systems, and studies of new and contemporary medical technologies/therapies

RETHINKING GENDER NORMATIVITY, SEXUALITY, AND MORALITY THROUGH NON-BIOMEDICAL EPISTEMOLOGIES

Thursday, November 17th 8:00 AM – 9:45 AM

Organizer(s): Venera Khalikova (University of Pittsburgh) and Kristin Bright (Carleton University, Canada)

Chair: Venera Khalikova (University of Pittsburgh)

Discussant(s): Lucinda Ramberg (Cornell University) and Kristin Bright (Carleton University, Canada)

This session will propose new ways of thinking about gender and sexuality as heterogeneous subjects. The papers will examine how gender and sex are configured and reconfigured in biomedicine and complementary or alternative medical and health systems.

DISCOVERING WAYS IN WHICH DEATH OCCURS IN A CULTURAL CONTEXT

Friday, November 18th 8:00 AM – 9:45 AM

Organizer: Erica Borgstrom (Open University, United Kingdom)

Chair: Erica Borgstrom (Open University, United Kingdom)

Discussant: James Green (University of Washington)

In this session, presenters will reveal how death occurs and is interpreted in both biomedical and local cultural contexts. Papers address death, dying, and aging in India, China, the United States, and in migrant communities in Australia.

(RE)DISCOVERING PSYCHEDELICS IN THE 21ST CENTURY

Friday, November 18th 10:15 AM – 12:00 PM

Organizer(s): Shana Harris (University of Central Florida) and Hilary Agro (University of British Columbia, Canada)

Chair(s): Shana Harris (University of Central Florida) and Hilary Agro (University of British Columbia, Canada)

Discussant: Michael Oldani (Concordia University Wisconsin)

Papers in this session will explore the (re)emergences of psychedelic drugs, particularly in the contexts of treatment and medical research, but also beyond the boundaries of biomedicine: including traditional use of ayahuasca, and the use of drugs in rave culture.
NEW DIRECTIONS IN THE INTERSECTION OF MEDICAL ANTHROPOLOGY AND BIOETHICS 

Friday, November 18th 4:00 PM – 5:45 PM

Organizer(s): Eileen Anderson-Fye (Case Western Reserve University) and Jonathan Sadowsky (Case Western Reserve University)

Chair: Paul Brodwin (University of Wisconsin, Milwaukee)

Discussant(s): Rebecca Lester (Washington University, St Louis) and Jonathan Sadowsky
(Case Western Reserve University)

In this session, presenters will offer four different anthropological cases that highlight the intersections of anthropology and bioethics: genomic research in Africa, physician-aided dying, body image and obesity, and transnational healthcare in Brazil.
“BODY-WORK”: SCIENCE AND TECHNOLOGY STUDIES IN MEDICAL ANTHROPOLOGY

Saturday, November 19th 2:30 PM – 2:45 PM

Papers in this session will explore the intersections of medical anthropology and contemporary studies in science and technology. Paper topics include the use of human tissue in continuing medical education, ‘smart machines’ and disability, new genetics sequences technologies in a cancer clinic, neuropsychiatry and resistance, and relationships between nurses and patients in HIV clinical settings.

 

AAA 2016 Session Highlights: Part 1, Evidence

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Image via AAA Website

This is the first in a two-part series spotlighting sessions in medical anthropology at the upcoming 2016 Annual Meeting of the American Anthropological Association (AAA) in Minneapolis, Minnesota. Though not intended to be exhaustive in scope, this series will highlight a selection of sessions at the AAA that may interest our readers and conference attendees. The sessions spotlighted here centered around two themes: evidence (Part 1) and discoveries (Part 2.) These two subjects are also the core themes of this year’s annual meeting. For more information, find details about this year’s conference at this link.


Sessions on “Evidence”: Paper Sessions on the Themes of Knowledges, Certainties, Uncertainties, Evaluation, and Medical Data in Practice

HEGEMONY OF EVIDENCE: THE SHAPING OF KNOWLEDGE AND UNCERTAINTY

Wednesday, November 16th / 4:00 PM – 5:45 PM

Chair: Shannon Satterwhite (University of California, San Francisco)

This session will include papers on biopolitics, medical documentation, certainty and diagnosis, maternal health data collection, and nursing and primary care practices.

AMBIGUITIES OF CERTAINTY: NEGOTIATING KNOWLEDGE AND NAVIGATING THE BOUNDARIES OF EVIDENCE

Thursday, November 17th 8:00 AM – 9:45 AM

Chair: Anna Zogas (University of Washington)

Papers in this session will address health rationalities and socialities, the nature of uncertainty and medical evidence, and the boundaries of medical knowledges.

EVIDENCE? ACCIDENT? DISCOVERY? PSYCHOSIS, MORAL SUBJECTIVITY AND CARE 

Thursday, November 17th 10:15 AM – 12:00 PM

Organizer(s): Neely Myers (Southern Methodist University) and Michael D’Arcy (University of California, Berkeley)

Chair: Lauren Cubellis (Washington University, St Louis)

Discussant: Elizabeth Bromley (University of California, Los Angeles)

In this session, the presenters will explore numerous connections between psychological experiences, illnesses, and clinical evidence.

EVIDENCE AND THE ENDS OF AIDS: SCIENCE, DISCOURSE, AND POLITICS AT THE END OF THE TREATMENT SCALE-UP ERA

Thursday, November 17th 4:00 PM – 5:45 PM

Organizer(s): Nora Kenworthy (University of Washington, Bothell) and  Matthew Thomann (Columbia University)

Chair: Richard Parker (Columbia University)

Discussant: Vinh-Kim Nguyen (Graduate Institute of International and Development Studies Geneva, Switzerland)

Papers in this session will explore global AIDS/HIV landscapes, including the reframing of risk, data, and treatments. They will also consider the ties between science and politics in HIV/AIDS research and global health initiatives.

CLINICAL IMPRESSIONS: REGIMES OF INTERPRETATION AND EVALUATION IN HEALTHCARE

Friday, November 18th 10:15 AM – 12:00 PM

Organizer(s): Adam Baim (University of Chicago), Colin Halverson (University of Chicago)

Chair(s): Talia Weiner (University of Chicago), Miao Hua (University of Chicago)

Discussant: Barry Saunders (University of North Carolina, Chapel Hill)

This session will explore how biomedical systems are evaluated, how biomedical practitioners evaluate illness, and how medical evidence and interpretation align in numerous settings.