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.

SfAA 2017 Conference Feature Part 1: “Experiences and Identity in Long-term and Chronic Illnesses”

This week on the blog we are highlighting part one 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 Beth Moretzsky and Ellen Rubinstein’s presentations. Next week we will feature part two with Karen Dyer and Marlaine Gray.

Beth Moretzsky (GSU) – Cancer Survivorship as Contested Category and Lived Reality

Moretzsky begins by maintaining the term “cancer survivor” is a social category and societal label which does not adequately represent the individuals it claims to include. The label does not encompass the multifaceted, lived experiences of those living with post-cancer treatment and instead conveys a cultural idea of what these individuals can represent to other people. In 2014 the American Cancer Society identified over 14 million living individuals in the United States who received a cancer diagnosis at some point in their lives. Moretzsky states that as we think about how to reach, support, and provide services for this population that has unique medical and social needs, we need to understand how this term “cancer survivor” is interpreted. We also need to appreciate how people who have had cancer respond to this label frequently used by non-profit organizations and the medical community.

Life after treatment for cancer is a period of complicated uncertainty. Rather than a unified “survivorship” experience which is often portrayed by the media, Moretzsky’s fieldwork examines how people characterize their own lives post-treatment. Between June and August of 2016 Moretzsky conducted 19 interviews with individuals who had completed treatment for several types of cancer. Her goal was to determine how participants conceptualize the idea of “cancer survivorship,” whether or not they thought of themselves as a “cancer survivor,” and how stories of experiences, treatments, and diagnoses were carried into the present.

Three main findings of Moretzsky’s research state that “cancer survivor” was rejected as a useful category because of (1) a confusing biological and medical usage, (2) a tendency to define people solely on their illness, and (3) because of various social implications of the term’s usage. Many people merged “cancer survivor” as a biomedical term, indicating a stage in the medical process, with a colloquial label for individuals who had undergone this diagnosis. The line between the social and medical categories often blurs, revealing a meaning- and value-laden term with little practical use. Yet no one can seem to agree upon who falls within the category. Moretzsky asks, who gets to define and speak about illness for these individuals?

In this research, the discomfort over the use of the “cancer survivor” term came up time and time again. Cancer “survivors” are represented as heroes who have triumphed over this illness, perpetuating problematic notions of who gets defined as a survivor, as well as the negative social impacts of applying this label. Moretzsky argues the label placed onto people disregards the experiences of those individuals. The public’s support of individuals battling cancer conjures up the image of a successful warrior rather than an individual with a complex daily experience. The models of success paints “survivors” as strong, optimistic, and successful, even if those individuals do not see themselves in those narratives of triumph. Moretzsky states that not all individuals with a history of cancer view themselves as the pink warriors that the media shares every October. While some participants stated they felt driven to become better people as a result of their cancer, almost as if they needed to fill our societal search for heroes, others strongly resisted this categorization as a “cancer survivor.” The latter often argued against problematic notions that there was something special about them that warranted their persistence, saying the model should instead be: “Don’t be a hero. Ask for the help you need.” These varying responses to treatment contradict the notions of “surviving heroically” and suggested complexity and diversity to human experiences.

Additionally, for many with lingering side effects, financial problems, and emotional complications, this term “cancer survivor” signified a success that may never be achieved, and misrepresented the challenges they continue to face long after treatment completion.

Moretzsky argues that subjectivity is a better model and representation of a person because it is an inherently dynamic concept. Subjectivity allows for agency in how people are self-identifying. To follow the lead of subjectivity would mean we could enable those who have completed cancer treatment to define themselves and categorize their own lives as they see fit. Rather than upholding the category of “cancer survivorship,” allowing individuals to self-identify according to their own experiences would enable other sentiments to be expressed. In Moretzsky’s research, nearly all those who did identify as a “cancer survivor” accepted the original definition of “cancer survivorship” as a biomedical phase of treatment, still expressing problems with some of the heroic language hidden in “survivorship.”

This research suggests that many organizations, particularly those providing post-treatment services for cancer, should critically assess their language. If “cancer survivors” do not identify in that way, it limits the reach of organization marketing to this population, potentially missing many of the people they are trying to help.


Ellen Rubinstein (and Benjamin Crabtree) (RWJMS) – Lost in Translation: The Perils of Prioritizing Cancer Survivorship in Primary Care

Rubinstein begins by describing “Parker” as a man in the Denver suburbs who had left Colorado many years ago to attend a Big 10 college and compete as a pole vaulter. In his sophomore year, after what was assumed to be pain and damage from a sports-related injury, blood tests revealed he had osteosarcoma, or bone cancer. “One day I’m on campus and literally the next day I was back in Denver searching for hospitals around the world.” After a brutal round of chemotherapy, Parker’s leg was amputated mid-thigh. Eight years later the pain started again “out of nowhere.” Even though Parker’s pain was directly related to his cancer-caused amputation, Parker disclosed that he felt it may be better not to tell his primary care physicians about his cancer history. “All of a sudden your treatment for what’s wrong stops right there… It can really take over medically.”

Rubinstein explains that Parker’s story provides us with an opportunity for critical reflection on the push to integrate “cancer survivorship” into routine primary care practice. For Parker, pain was a far more salient issue than cancer. Even though the two ailments were intertwined, he spoke of them as if they were separate entities with their own biography. Rubinstein states Parker did not like to identity himself as a “cancer survivor.”

The story of the “cancer survivor” is a story about the multiple translations, or semiotic events, that occur both within the context of an office visit and within the wider context of a patient’s life. The status of “survivorship” occurs at the moment of diagnosis, where a patient plays an active role as an embattled warrior who is supposed to emerge from the fight victorious. Yet as clinicians begin to recognize that cancer is a chronic condition, it becomes impossible to escape cancer’s existential clutches, leading to a problematic life sentence. Rubinstein quotes, “One cannot just live, but must always be not-dying.”

Further, there is a distinction between “I have” and “I am” diseases. “I am” encroaches on an individual’s self-identity categories. Cancer “survivorship” falls into a similar category: “I have” cancer during an active treatment, but “I am” a cancer survivor. In the transition from active treatment to follow-up care, going from having a disease as part of the body to occupying a medically and clinically delineated subject position, this one medical event now defined them. Rubinstein discusses that many people survive other sickness events yet are not referred to as “survivors.” One participant states she has a history of mononucleosis and hypertension, yet has never been referred to as a “mono survivor” or “hypertension survivor.” Identifying as a “cancer survivor” overshadows the remainder of individual complexity.

Rubinstein argues the medical community is so steeped in cancer rhetoric that when a patient complains of various maladies, such as sexual dysfunction or weight gain, the immediate or inevitable response is that “these are well-known late and long-term effects of cancer and its treatments.” In making this assumption however, clinicians have already ignored what the patient is saying. If the patient does not identify their symptoms as being related to their cancer, then what is the benefit of forcing them to interpret their symptoms in that way?

Part of this framing of symptoms stems from a political and economic necessity for identifying cancer “survivors” as a unique population with distinct medical needs. Making a kinship of individuals who have experienced cancer, contrasted against those who have not, makes them a large and powerful constituency. Yet cancer in reality is slippery, chaotic, and constantly being redefined. Experiences and outcomes vary widely, making it impossible to group together the vast array of subjectivities into one entity. Rubinstein argues that current biomedical discourse does a poor job of capturing complex and diverse lived experiences.

Rubinstein concludes by asking if an individual does not consider themselves as a “cancer survivor,” then what are the broader implications for their health and well-being when clinicians insist that their current problems are the direct result of their cancer or cancer treatment. How much does etiology matter in the moment of the clinical encounter, and how much does it influence a patient’s future relationship with their primary care physician? Rubinstein states that in de-emphasizing the “survivor” in primary care conversations, we recognize that a history of cancer is only one set of concerns among many.


Part two of “Experiences and Identity in Long-term and Chronic Illnesses” featuring Karen Dyer and Marlaine Gray will continue next week. 

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.

 

SPA 2017 Biennial Meeting: Breakfast Lecture with Richard Shweder and Byron Good

This week we’re featuring a summary of The 2017 Biennial Meeting of The Society for Psychological Anthropology Breakfast Lecture. This year, the Breakfast Lecture presented a conversation with the 2016 Lifetime Achievement Awardee, Richard Shweder, and the 2017 Lifetime Achievement Awardee, Byron Good. In this event, Dr. Shweder and Dr. Good reflect on morality and “the mental” in both Cultural Psychology and Psychological Anthropology, discussing how profoundly different worlds still share some moralities and orientations. They also discuss some critical challenges and opportunities for psychological anthropology. By interviewing each other, a foundational technique in anthropology itself, Dr. Shweder and Dr. Good explore their past works, theoretical orientations, and their anticipation of where anthropological explorations of psychological processes are heading.

2016 SPA Lifetime Achievement Awardee Richard Shweder

The conversation begins with Dr. Good asking Dr. Shweder to “tell us about your history.” Dr. Shweder delves into his upbringing in Great Neck on the north shore of Long Island, at the time an emerging suburb with a very progressive, left-wing population. He discusses the first time he heard the word anthropology in his 11th grade English class when “Mr. Beal” said, “for any of you who don’t know what to do in life, there’s this thing called anthropology.” After graduation Dr. Shweder went to the University of Pittsburgh where Dr. Arthur Tuden, an Africanist and Cultural Anthropologist, taught his Introduction to Anthropology class, bringing in the study of culture with current events and ultimately solidifying Dr. Shweder’s path in Anthropology. From Pittsburgh, Dr. Shweder progressed to Harvard, where he states several figures had an impact on his intellectual growth, including Cora DuBois and John Whiting. After finishing his Ph.D. at Harvard, Dr. Shweder taught at the University of Nairobi in Kenya before finally landing at the University of Chicago.

Dr. Shweder then, discussing approaches and schools of thought in Cultural Psychology, defines Cultural Psychology as “the study of differences in mentalities across human populations.” Psychological Anthropology, for Dr. Shweder, has been more interested in taking universal psychological schemes and applying them to particular cultures to see whether or not different practices or beliefs were essentially manifestations of a broader psychological concept, such as a variation on an Oedipus complex. There is not a denial of universals in Cultural Psychology, however, since, to Dr. Shweder, there is not a way of studying differences without also studying universals. Dr. Shweder describes his way of defining the Cultural Psychology of Morality as “investigating the fates of moral absolutes in history and to show the way they get transformed, take on different content, and lead to different judgments.” To Dr. Shweder, behind a culture or individual is a set of moral absolutes, or rules of moral reason. Yet these moral absolutes and rules are abstract concepts which do not present determinations of actual cases, histories, or cultural contexts. Cultural Psychology is not about looking for likenesses, but looking for the differentiations and local adaptations that have taken place. For Dr. Shweder, the psychological means looking at differences in “the mental.” “The mental” refers to what people know, think, feel, want, and value as good and bad. Dr. Shweder states, “Anywhere you look in the world you’re going to find that people know, think, feel, want, and value things as good and bad. In some sense, that’s what it means to be a person.”

Dr. Shweder follows up with a discussion that anthropologists are supposed to fairly represent the groups they study; to try to portray their way of life in a way that the people the anthropologist is writing for might see them not as “exotic aliens,” but as morally sensitive persons who do things for recognizable reasons. Dr. Shweder proposes the conspicuous use of the notion of “oppression,” or seeing the social order as oppressive, combined with the now popular term “agency,” suggests that to have agency was to be opposed to culture. Thus, for Dr. Shweder, the concept that there might be people whose agency was used to carry forward a cultural tradition which was in a framework where they felt they could be fulfilled, was gone. “When I went to India I was in a world where if I approached it as ‘a good liberal,’ assuming everything is free choice and the world is there to satisfy my preferences, I would have seen it as an oppressive order. Yet the people who live there, for the most part, feel quite at home with rich, meaningful lives,” Dr. Shweder states.

Building off the discussion of morality, Dr. Good then engages with concepts of morality and oppression. Dr. Good states that for him, the experience of morality is often an experience of oppression. He expresses that many people spend at least parts of their lives resisting or fighting against morality, feeling that the moral system around them is actually an oppressive system causing them to live their lives “wrongly” within it. It seems to Dr. Good that reading ethics with a grand “they” or a grand “we” misses, ethnographically, another side of the story. Dr. Shweder responds that there is a multiplicity of the moral world. The moral world has many goods and desires that are in conflict with each other, and one cannot have them all. This sets up the dynamic of resistance since the system of conflict and prioritization pushes alternatives to the side. Dr. Shweder states that within any society there is the orthodox and the heterodox, that which is center stage and that which is done covertly. The mistake is to privilege one ethic over another, to act as if that privileging itself is not a choice or commitment, or to label the ethic of autonomy as the “natural way” in which anyone who is fully enlightened will ultimately go. Dr. Shweder cautions against the view of “liberalism as destiny,” where there are stages of moral development, the height of moral development being an autonomous, individualized person or society.

2017 SPA Lifetime Achievement Awardee Byron Good

Dr. Good then discusses his personal and academic history. He starts by commenting that his childhood and upbringing couldn’t have been more different than Dr. Shweder’s, growing up on a Mennonite farm in the Republican mid-west. Dr. Good spent much of his life feeling that religion and divinity grounded and oriented aspects of his academic life. “I don’t romanticize ethical norms if they, over time, have become more and more interested in controlling our lives in ways that we have very little direct knowledge of,” Dr. Good states. “I don’t romanticize suffering.” While at Goshen College in Goshen, Indiana, Dr. Good started studying mathematics before spending a year at the University of Nigeria. Dr. Good expressed this time as having a powerful impact which changed his life. “My worldview became profoundly different,” he states. Coming back from Africa convinced that there had to be something more than mathematics, Dr. Good decided to go to Harvard Divinity School. It was there that he began taking courses in anthropology and religion. Attending the University of Chicago for his Ph.D., Dr. Good states his first year at Chicago was Clifford Geertz’s last year. Yet even after Geertz left, Dr. Good still considered him a mentor and inspiration. This was also a very political moment for universities and the country in general. Dr. Good describes how he came of age in anthropology in a time of the Vietnam War, in a time of activism, and in the time of the Civil Rights Movement. These were all very powerful influences on how Dr. Good conceptualized the importance of anthropology.

Discussing his research, Dr. Good describes the time he spent in a genuinely post-colonial conflict setting of Aceh, Indonesia.  He became very aware of colonialism and its colonial history and how it had impacted political life along with a diverse set of religious and cultural influences. It was a setting that had a history of tremendous violence. “It was my first experience of working in areas of really intensive conflict,” Dr. Good states, “and I have to say that I went home from that experience very affected by listening to stories of violence.” Terms like “post-colonialism” and “post-colonial subjectivity,” and even terms like “haunting” and “hauntology” became central to his vision of what Psychological Anthropology can be today. Dr. Good poses the question of how one does Psychological Anthropology in settings of violence. “My thinking about hauntology started off with being in Aceh, and thinking about what Aceh was like post-tsunami and post-conflict,” Dr. Good remarks. Aceh was a place where ghosts and spirits of the dead were everywhere, alongside the ghosts of the recent violence and the emergence of political gorillas who had been previously hidden away. “Suddenly Aceh was no longer in the midst of a war and people who had been fighting were coming back and appearing in everyday life,” Dr. Good explains, “and I began thinking about post-authoritarian Indonesia and why it is that there are certain moments in a society that ghosts begin to appear in a very powerful way, and ghosts that are related to historical violence.” Dr. Good became fascinated with the relationship between historical memory, histories of violence, how they make themselves present, and how they reintroduce themselves in psychological experience.

To wrap up the Breakfast Lecture, Dr. Shweder discusses how the issue of nationalism is front and center in a very powerful way at the moment. He suggests that anthropologists should be qualified to talk about the ethno-national impulses people are facing and examine why it is that some people feel like their way of life, or their control over their life, is being threatened by globalization, for example. He calls on anthropologists to give a native point of view instead of simply reacting with fear and mainstream ideology. “This is anthropology. There are in-groups and there are out-groups. People have ways of life and traditions; they want to exercise control over their way of life. This has to be examined,” Dr. Shweder states. He further discusses that one of the things that’s exceptional to the United States is that we are a nation in which constitutional patriotism is the binding feature. In principle, that means there is space for cultural diversity. “The ways in which tyranny can be built up and balanced through distribution of power are all rich topics right now. Immigration. Making sure we represent minority views in a way that majority groups understand them and why the way they live is both meaningful and justifiable.” Dr. Shweder finishes by stating that there are also threats to anthropology from within. He warns against a “liberal tyranny” which can be compared to a “white-man’s-burden-style” of thinking with regard to cultural differences. Dr. Shweder sees this as using the notion of oppression or exploitation as an excuse for interventions into other people’s ways of life rather than starting by seeing whether or not one can understand other practices and social organizations in a morally-motivated way. Dr. Good closes the conversation session by encouraging anthropologists to be engaged in both theoretical debates within the discipline as well as policy and implementation projects and practices which can benefit the people in the communities we study.


Richard Shweder is the Harold H. Swift Distinguished Service Professor of Human Development in the Department of Comparative Human Development at the University of Chicago. He is the author of Thinking Through Cultures: Expeditions in Cultural Psychology (1991) and Why Do Men Barbecue? Recipes for Cultural Psychology (2003), both published by Harvard University Press. Dr. Shweder is also an editor or co-editor of many books in the areas of cultural psychology, psychological anthropology, and comparative human development. For more information on Dr. Shweder, visit his page at the University of Chicago here, as well as the Society for Psychological Anthropology 2017 Biennial Conference Breakfast Lecture website, available here.

Byron Good is a Professor of Medical Anthropology at, and former Chair (2000-2006) of, the Department of Social Medicine, Harvard Medical School, and Professor in the Department of Anthropology, Harvard University. Dr. Good is director of the International Mental Health Training Program, funded by the Fogarty International Center to train psychiatrists from China in mental health services research. Dr. Good’s broader interests focus on the theorization of subjectivity in contemporary societies, focusing on the relation of political, cultural, and psychological renderings of the subject and experience, with a special interest in Indonesia. He is the editor or co-editor of many significant volumes, books, and is a former editor-in-chief of our Culture, Medicine, and Psychiatry journal (1986-2004). For more information on Dr. Good, visit the Harvard Medical School Department of Global Health and Social Medicine website here, as well as the Society for Psychological Anthropology 2017 Biennial Conference Breakfast Lecture website, available here.

From the Archive: “A Mother’s Heart is Weighed Down with Stones”

In our “From the Archive” series, we highlight an article from a past issue of the journal. In this installment, we explore Sarah Horton’s “A Mother’s Heart is Weighed Down with Stones: A Phenomenological Approach to the Experience of Transnational Motherhood,” available here. This article was featured in Volume 33, Issue 1 (March 2009).


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While there is still considerable confusion and uncertainty surrounding the current state of immigration in the United States and the international movements of people, our journal article authors have continually acknowledged the importance of focusing on the lived experience of individuals within these larger political contexts. In her article, Horton discusses transnational motherhood through the embodied distress of mothers and children, showing that their suffering cannot be examined separately. Through her analysis of the narratives of undocumented Salvadoran mothers living in the United States, Horton explains the pain of these mothers’ undocumented status is experienced within the intersubjective space of the family.

Horton begins by describing Elisabeta, a Salvadoran mother working in the United States while her young son and elderly mother remain in El Salvador. Elisabeta was part of Horton’s research at a Latino mental health clinic in a New England city. Since Elisabeta was unable to hold or touch her young son, Carmelo, she instead carried his photo with her wherever she went. Elisabeta described her life as divided, “I work here but my heart lives there.” This division of “here” and “there” in transnational motherhood is not uncommon for undocumented immigrants who left their children in their home countries.

As the postindustrial, technology-based economy has grown within the U.S., women are increasingly migrating alone to find work in the high-tech sector, reshaping the immigrant family and trans-nationalizing the meaning of motherhood. At the same time, the 1996 Illegal Immigration Reform and Immigrant Responsibility Act (IIRIRA) increased both border policing and militarization as well as deportation and family separation in border communities. This meant that mothers working in the U.S. have found it more difficult to be reunited with their children, fearful of the dangerous and expensive crossing for their undocumented children, and the inability of the women to return home to visit. Thus, while many women had originally imagined their separations would be only temporary, the transnational relationship between mother and children can last years.

Horton explains that even though family separation has long been a reality for immigrants, scholarship has often ignored this lived experience as an independent factor of stress and trauma. Further, mental health analyses are frequently positioned at the individual level, and neglect the larger context of how such familial changes and separations are experienced and endured in the inter-subjective space between parents and children. Elisabeta described the aching in her chest when she would speak to her son on the phone each weekend. Later, when her son became seriously ill, Elisabeta felt an acute sense of failure – as both a mother unable to care for her ill son, and as a provider unable to pay for the operation he needed. Elisabeta was often unable to sleep at night, surrounded by thoughts of Carmelo’s words and tears. Horton explains Elisabeta’s vivid narrative expressed her embodied distress of being a transnational mother and the relational nature of the family’s suffering.

Gloria, another immigrant from El Salvador, left to find better economic opportunities after a series of devastating earthquakes in her home town. Gloria decided to leave her birthplace after it had become a space of death and scarcity, and the small business she and her husband had established had been destroyed. “There wasn’t enough food to give the kids. There was no way for me to keep them alive. And so I came here,” she said. For Gloria, and other women Horton interviewed, traumatic events reshaped familiar places and people, and triggered their decisions to migrate. Further trauma of the women having to explain their departures to their children were overwhelming.

The paradox of parenthood for these mothers is often having to choose between either financially supporting their children from a distance or physically being their caretakers. Horton explains that these parents have a profound sense of moral failing, perceiving that their inability to serve as “proper parents” is compounded by the difficulties of succeeding economically. Horton argues that placing these issues of “choice” and “decision making” against the backdrop of limited agency and “illegality” in the U.S. causes the parents’ immobility and powerlessness to reverberate through the space of a family stretched across international borders.

Children left behind in El Salvador often shoulder adult burdens, attempting to either prevent their mothers’ departure or requesting to join their mothers on the dangerous journey to the U.S. According to Horton, when the realization of the uncertainty in their separation becomes overwhelming, children respond to what they perceive as their mothers’ withdrawal of love with their own form of withdrawal. “My daughter then told me she had erased me from her heart, and that she didn’t love me anymore,” Gloria recounted. “El corazon de madre es un monton de piedras.” (“A mother’s heart is weighed down with a mountain of stones.”) This “weighing-down” is the burden Gloria had assumed in suffering the anger of her children while she only wished to protect them from hunger. Horton explains Gloria’s narrative demonstrates that suffering is relational, experienced through social connections and threats of uncertain future relationships. Horton says this transnational separation strains the bond between mother and child, as their distance is experienced both physically and emotionally.

Horton discusses strategies these transnational mothers undertake in order to attempt to substitute their parental presence. One strategy of sending gifts and luxury items, such as a color T.V. or special toys, is a way of feeling as if they are giving their children love and support. Yet this happiness from the fulfillment of financial support is temporary, and quickly overshadowed with sadness as children will often ask when they will be reunited again. Both the mothers and children know the gifts are double-edged, symbolizing the mothers’ love yet justifying their absence.

Horton concludes by calling for researchers to bridge the gap between subjective experiences of families living with separation and objective analyses of structure “illegality” and immigration policies. In hoping for more phenomenological accounts of transnational family life, Horton shows how sociopolitical inequality shapes individual experience and produces patterns of social suffering. She also places transnational mothers’ distress within a larger framework of social conditions that reproduce powerlessness and disadvantage. The sophistication of phenomenological approaches illustrates the ways that undocumented immigrants may experience embodied stress of strained family ties.

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.

In the News: Health Disparities and Water Quality in the 2016 Rio Summer Olympics

 

August 2016 – The 2016 Summer Olympic games in Rio de Janeiro, Brazil has dominated news headlines in recent weeks. The athletics event, taking place from August 5 to August 21, featured 207 countries in the Parade of Nations as well as the first ever Refugee Olympic Team. It is the first time the games have been held in South America. But besides highlights on the events and spotlights on athletes’ training regimens and backgrounds, there is another stream of news stories surrounding the Olympic Games. These stories have focused on two key public health issues related to this year’s Games: health disparities and water quality issues.

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Rio’s Olympic beach volleyball venue is on Copacabana Beach. Photo from Marcio Jose Sanchez for AP.

Only two years ago the FIFA World Cup was making similar headlines in Brazil. As reported in 2014, and highlighted in this blog[1], there have been past concerns about access to quality healthcare despite the surge of funds for the World Cup event. These reports unmasked a problematic system of health disparities to a global audience. The Daily Californian[2] stated that many Brazilians were “unhappy that their government [was] funding stadium renovations instead of spending on more instrumental matters like improved health care and emergency services.” Reports relating to the current Olympics have painted a similar picture for the present health scene. As Reuters[3] reported in December 2015, the governor of Rio de Janeiro declared a state of emergency “as hospitals, emergency rooms and health clinics cut services or closed units throughout the state as money ran out for equipment, supplies and salaries.” According to CNN[4], the financial crisis has been causing difficulties in the “provision of essential public services and can even cause a total breakdown in public security, health, education, mobility and environmental management.”. While the state of emergency declaration provides a critical 45 million reais ($25.3 million) in federal aid and may facilitate the transfer of future funds, estimates state that Rio de Janeiro owes approximately $355 million to employees and suppliers in the healthcare sector alone, and the state needs over $100 million to reopen the closed hospital units and clinics.[5] While the city of Rio spent approximately $7.1 billion on improving toll roads, ports and other infrastructure projects, the Brazil Ministry of Health devoted only $5.7 million to address health concerns[6].

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The Christ the Redeemer statue is visible above the Santa Marta favela in Rio de Janeiro. Photo from Joao Velozo for NPR. 

In addition to these issues (and the high-profile Zika virus, which is causing health concerns in multiple countries[7]), concerns surrounding water quality and cleanliness in Brazil has garnered considerable attention. A recent scene involving the diving and water polo pools turning a swamp-green color because of an algae bloom left some athletes complaining of itchy eyes.[8] While the Olympic Games have brought international attention to the impact of water quality on the athletes and visitors, the residents of Rio have been dealing with theses concerns on a daily basis for much longer. With almost 13 million people living in and around Rio, the current sewage system is struggling to cope. One news report[9] notes that “about 50 percent of what Brazilians flush down the toilet ends up in the country’s waterways. Diseases related to contaminated water are the second leading cause of death for children under five in Brazil.” Tests performed in a variety of areas, including the sailing venue of Guanabara Bay, over the course of a year found high levels of “superbugs of the sort found in hospitals on the shores of the bay.” The possibility of hospital sewage entering the municipal sewage system remains a concern.[10]

An economic recession, compounded by water concerns, political unrest, and a presently faltering healthcare system all leave many Cariocas— citizens of Rio– who rely on the public health system in a challenging and hazardous situation across the social, medical, and political spheres. With hopes of local profits from the Olympic Games ranging in the billions of dollars, much is at stake for both residents and investors.[11] Despite the risks and tribulations, many residents welcome the international event and attention, and credit the Olympics for cultivating “several underutilized, often abandoned spaces have been transformed to ones that appeal and cater to local residents”. Many “beautification” projects leave residents hoping the installation of new art and the newly constructed spaces will leave a lasting impression on its residents and visitors long after the games end.[12]  Despite this optimism, the citizens of Rio are not impacted equally by the Games.[13] The improved infrastructures will likely benefit those who already have access to services. Tourism, and tourism cash, has been weak in the favelas, or shantytowns, which house at least 25% of the population in Rio. The infrastructure inequities have even bypassed some neighborhoods entirely, leaving those residents out of the celebrations.[14]

Overall, these Olympic Games promise once again to bring the world’s cultures together in competition and camaraderie, yet they do not do so without controversy. This global spectacle illuminates athletics and sportsmanship, as well as the intersections between cultural events, politics and nationalism, power and profit, and community health. These larger issues lead to questions about what will happen to the residents of Rio after the Games have drawn to a close.

 


[1] https://culturemedicinepsychiatry.com/2014/07/11/news-the-2014-world-cup-and-healthcare-in-brazil/

[2] http://www.dailycal.org/2014/07/08/uc-berkeley-faculty-graduate-students-look-world-cup-different-light/

[3] http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[4] http://www.cnn.com/2016/06/18/americas/brazil-rio-state-emergency-funding-olympics/

[5]http://www.reuters.com/article/us-brazil-health-emergency-idUSKBN0U716Q20151224

[6] http://wuwm.com/post/let-s-do-numbers-money-spent-rio-olympics#stream/0

[7] http://www.nytimes.com/2016/01/29/world/americas/brazil-zika-rio-olympics.html?_r=0

[8] http://uk.reuters.com/article/uk-olympics-rio-diving-pool-idUKKCN10O0UW?feedType=RSS&feedName=sportsNews

[9] http://wuwm.com/post/rios-water-problems-go-far-beyond-olympics#stream/0

[10] http://edition.cnn.com/2016/08/02/sport/rio-2016-olympic-games-water-quality-sailing-rowing/index.html

[11] http://www.newsweek.com/rio-2016-who-stands-benefit-successful-olympics-453094

[12] http://www.kvia.com/news/rio-olympics-bring-beautification-projects/40884340

[13] http://www.npr.org/sections/thetorch/2016/08/11/487769536/in-rios-favelas-hoped-for-benefits-from-olympics-have-yet-to-materialize

[14] http://www.reuters.com/video/2016/08/14/olympic-infrastructure-causes-suffering?videoId=369565427

Issue Highlight Vol 40 Issue 2: Hospitals as Sites of Conflict in Pakistan

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In the coming blog posts, we will be highlighting new articles from our June 2016 issue, which you can access in full here. The theme of this special issue is The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. This week, we will overview Emma Varley’s article “Abandonments, Solidarities and Logics of Care: Hospitals as Sites of Sectarian Conflict in Gilgit-Baltistan.” Read the full article here.


As our past blog highlights have suggested, the clinical space can both act as a site of political protest and serve to facilitate political unity. Varley’s article expands upon these themes by arguing that the clinic can also become a microcosm of inter-group tensions, wherein the hospital itself relays a picture of broader social conflict. Through her analysis of a crisis in a Pakistani hospital, Varley ethnographically demonstrates how Sunni-Shia conflicts manifest in the clinic, and how these tensions are navigated by health professionals employed there.

Varley recounts a shooting and raid which occurred at a hospital in Gilgit-Baltistan in January 2005. Shia gunmen had entered the regional hospital to hunt down Sunni male patients, aiming to retaliate after the assassination of a Shia leader killed by Sunnis. One women’s health ward, operated by nurses of the neutral Ismaili group, was left untouched after the nurses hid Sunni male patients. The nurses protected the men by insisting to the gunmen that there would be no male patients on a female ward: drawing both upon their social role as neutral Ismaili and their gendered role as caregivers of women, who were seen as uninvolved in the conflict at hand. Meanwhile, in a surgical theatre, physicians pretended as if the assassinated Shia leader on their operating table was still alive: hoping to placate the gunmen who threatened them until police or military forces could arrive to dispel the violence. Orderlies and other guards on the wards had, in some cases, fled: leaving clinical staff to defend or otherwise conceal the Sunni patients, and in other cases, fellow Sunni providers.

In reflecting on this incident, Varley notes that the hospital became an example of an “abandoned” space, one in which the necessary governmental protections and securities were not in place to ensure the safety of all patients and clinicians. The onus of protecting patients fell upon the clinicians who staffed the hospital: illustrating both the selflessness of individuals in assisting one another across oppositional group divides, and the potential for hospitals to become sites of medical and political refuge. This increased the trust between Shia providers and their Sunni colleagues in medicine. Conversely, the incident intensified professional divisions between Shia and Sunni providers, as Sunni clinicians later departed the larger regional hospital and took up employment in new Sunni health centers where they felt less at risk.

Though Varley reminds us that conflict is “corrosive” within medical professional relationships, it may also enable “renewed” feelings of trust between caregivers of opposing groups when political unrest unites them under a common aim. In sum, the hospital may serve a site of caregiving exchanges that expand beyond the bounds of medical encounters, as it becomes a sites of political action and negotiation between social groups.

Guest Blog: ‘In-Betweenness’: Liminality, Legality, and Migrant Health in Siracusa, Italy

This week on the blog, we are hosting a guest post by Adam Kersch, an MA Candidate who will begin his PhD in anthropology at the University of California – Davis this fall. Here, he presents findings from his ethnographic research on the health and wellbeing of migrants entangled in the legal webs of relocation in southern Italy.

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In January to July 2015, I conducted ethnographic research at a reception center for migrants in Siracusa, Italy, focusing on the struggles they faced upon arrival. Although the legal difficulties and hurdles that migrants faced were readily apparent, the toll that these policies took on the health and well-being of these migrants became increasingly visible during my research. Migrants coming to Italy and to Europe have often endured traumatic events resulting from war, violence, and poverty. Once migrants come to Europe, this crucial period of psychological and physical recovery is marked by ongoing anxiety and hardship as they navigate a complex web of legal processes as they seek asylum. That is, procedures and policies that compose the migration reception apparatus commonly have direct and deleterious effects on migrants’ health.

Abraham was one such migrant whose mental well-being was harmed by slow moving legislative mechanisms. Abraham, a 25 year-old Pakistani man, had been waiting in Umberto I, a primary reception center for migrants in Siracusa, Italy, for nearly six weeks and had heard nothing regarding the status of his asylum request. The poorly-supplied center was only designed to hold migrants for 72 hours, and no legal information was provided to its residents, leaving the migrants waiting in Umberto I without a clue as to their futures in Italy. Abraham left Pakistan fleeing sectarian violence and lack of economic opportunity. After some travel, he found himself in Libya, seeking passage to Europe. Like many other migrants, he was tortured and robbed by militias while in Libya as he worked to pay for his passage to Europe. Reeling from torture, the stress of his liminal status in Italy became unbearable. The center had given him no idea as to when he would be transferred, why he was there, or what his future might be like. Like many others before him, one day Abraham had enough of the waiting and clandestinely left the reception center. He contacted me a few days after leaving, begging for help. He was in Northern Italy, trying to cross the border into France to meet with a friend in Spain, but he kept getting caught and sent back to Italy. “I want to die,” he confessed, “I am a failure. I cannot support myself, I cannot support my family. No money, no work.” Having come to Europe for safety and to help support his family back in Pakistan, the painfully lethargic process of legal recognition prevented Abraham from being able to achieve his goals. His lack of documents prevented him from legally seeking work, but the longer he waited for these documents, the longer his family in Pakistan went hungry, unable to support themselves. Trying to seek asylum elsewhere seemed to him the only logical choice.

During my fieldwork in 2015, I found that migrants waiting to hear about their legal status in Italy had little to no access to legal information, and that this state of liminality facilitated social, psychological, and somatic trauma. Centers like Umberto I function as a part of the migrant reception apparatus in Italy that treats migrants with spotty assistance at best, and absolute negligence at worst. This lack of legal knowledge contributes to an environment of anxiety and leads to the physical and mental suffering of the hundreds of thousands of migrants who have come to Italy in recent years. This dearth of information violates United Nations and European Union (EU) policies on migrant reception, both of which stress that migrants should have access to any legal personnel willing to provide services. In this way, these policies suspend migrants in an ambiguous, unresolved legal status that both directly and indirectly impacts the psychological and somatic health of the migrants and their families.

Lamin, a 20-year-old migrant from Gambia, was another temporary resident of Umberto I. He, like Abraham, experienced deteriorating health as a result of the migrant reception policies and procedures in Siracusa. He had unknowingly agreed to serve as a legal witness for the state against the captain of the boat that brought him across the Mediterranean, who was being charged with human trafficking. The police had effectively coerced Lamin to sign the papers, which were in Italian. They assured him the papers were for his own benefit as they would secure him legal protection. However, since signing them, he had no updates about the court proceedings or about his own legal status. Lamin languished in Umberto I for the moment that he might be transferred or summoned, all the while ignoring the severe pain he was experiencing as a result of holes that had been drilled into his teeth when he was tortured in Libya. He refused to seek medical help, fearing that he may miss his chance to leave Umberto I and finally move forward while getting his teeth fixed. It was only after significant encouraging that he finally sought care from Emergency, a local medical NGO. Thankfully, Lamin successfully recovered and was finally transferred a few weeks later.

In cases such as Lamin’s, legal liminality takes priority over physical suffering. As a result, the slow and onerous migrant reception apparatus exacerbates and prolongs the wounds of migration, whether they are psychological, physical, or social. Those in Umberto I are far from the only sufferers of legal liminality. Cutiyo and her daughter, both refugees from Somalia, came into the legal office late one night in Siracusa. Cutiyo had regularly been coming to speak with Giulia, a local legal activist, to help file a family reunification to bring her husband living in Somalia to Italy. She often saw Giulia simply to ask about the progress of her husband’s case, wondering when she might finally see him again and when he would finally be safe from the violence in Somalia. Cutiyo spoke softly and left quietly after speaking to Giulia. Giulia turned to me, on the verge of tears, and explained that Cutiyo’s husband had been shot in the head five times by militants the night before in Somalia. This happened only a day or two before Cutiyo’s husband was finally to be brought to Italy to be with his wife and daughter. If the sluggish process had been streamlined, perhaps the family could have been reunited. Instead, Cutiyo was now alone in Italy with her daughter, faced with both an uncertain legal status and the social distress and strain caused by the death of her husband. The slow-moving Italian legal system had produced another casualty.

These moments of “in-betweenness” that migrants experience are crucial periods of temporal and social displacement that exacerbate the traumas from which many migrants are attempting to recover. As migrants wait to receive documentation or for their families to be reunited, the physical and psychological risks inherent to seeking a new future in Europe are placed in migrants’ peripheries as they seek legal recognition. As observed by anthropologists Cristiana Giordano (2014) and Miriam Ticktin (2011), granting asylum is often a process of recognizing and validating the suffering migrants experience before arriving in Europe. In circumstances such as these, suffering can become a migrant’s path to legal protection, functioning as a perverse currency that promises security and safety. But during the period in Europe preceding asylum decisions, migrants’ pains are perhaps ironically exacerbated by obtuse and labyrinthine legal processes in the very countries they have come to for protection. Whether it be by anxiety that defers attention to health issues, an uncertain future prompting a rejection of the reception apparatus, or documentation that arrives too late, migrant legislation and reception procedures in Siracusa, Italy have severe consequences for the well-being of people seeking a new future in Europe.

Sources Cited

Giordano, Cristiana. (2014). Migrants in Translation: Caring and the Logics of Difference in Contemporary Italy. Berkeley: University of California Press.

Ticktin, Miriam. (2011). Casualties of Care: Immigration and the Politics of Humanitarianism in France. Berkeley: University of California Press.


 

About the Author: Adam Kersch is currently a MA Candidate at the University of Central Florida and in September 2016 will begin his first year of PhD studies in Sociocultural Anthropology at the University of California, Davis as a Mellon Institute Comparative Border Studies Fellow. His research is focused on provision of health and legal services to migrants in Italy. He is particularly interested in human rights, imaginaries of Europe, and the politics of care in the context of austerity.