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Book Review: “A Surgeon in the Village”

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

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

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

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

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

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

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

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

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

From the Archive: “On the Social Constructionist Approach to Traumatized Selves in Post-disaster Settings: State-Induced Violence in Nandigram, India”

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This week we are highlighting an article from September 2015 (Vol. 39, Issue 3) entitled On the Social Constructionist Approach to Traumatized Selves in Post-disaster Settings: State-Induced Violence in Nandigram, India by Kumar Ravi Priya. The article discusses how a social-constructionist analysis into exploring how the continuity of self-hood is threatened or altered within socio-political and cultural contexts generates the experiences of suffering and healing. Through an ethnographic study conducted among the survivors of political violence in Nandigram, India, Dr. Priya aims to study the experiences of suffering and healing among the traumatized selves.

Priya states that the distressing experiences of survivors are understood in psychology and psychiatry principally as the behavioral symptoms resulting from an “incomplete emotional and cognitive processing of traumatic events.” With such an exclusive focus on the intra-psychic processes, trauma-related distress associated with the cultural interpretation of loss is largely ignored. Through an ethnographic study among the poor farmers of Nandigram, India, subjected to violence from the state government as it tried to forcibly acquire their land, Priya discusses the utility of the social constructionist paradigm in understanding the survivors’ experiences of suffering and healing within the cultural and sociopolitical context of violence.

Multidisciplinary approaches to subjective experiences of trauma state that a complete focus on posttraumatic stress disorder (PTSD) may be ontologically irrelevant in cultures that do not value the notions of an individualistic self. Priya states that unlike the positivist tradition of research within mainstream psychology and psychiatry, the social-constructionist paradigm opens up the scope for psychological understanding of human experiences in their sociocultural and historical contexts. Alternative conceptualizations of the psychological impact of trauma must incorporate the cultural notions of self and how its coherence is threatened and re-negotiated amidst the traumatic events and their sociopolitical consequences.

For Priya, people can suffer from what they have lost of themselves in relation to the world of objects, events, and relationships. Such suffering occurs because an intactness of person, a coherence and integrity, comes not only from intactness of the body, but also from the wholeness of the web of relationships with self and others. The wholeness that a person experiences may be threatened if they not able to uphold the culturally valued aspects of self-definition. Yet it is the social world, even when mutilated in war or violent events, that holds the key to recovery or healing. Healing can be described as the process of restoring the experience of wholeness by reformulating aspects of person in a new way.

Priya uses themes of suffering and healing to highlight how the traumatized selves experience intense distress resulting from disruptions to a sense of wholeness. Yet this wholeness may also be reformulated through culturally valued beliefs. Themes include “experience of PTSD symptoms,” “betrayed self,” “overwhelmed by loss,” “biographical disruption,” “moral reaffirmation,” “sense of togetherness,” and “sense of security due to change in political environment.”

Aman, a 36-year-old man who worked as a daily-wage laborer, lost his teenage son in an attack on a political demonstration he was participating in. Aman’s account often reflected his distress due to sorrow and grief, as well as his inability to comfort his inconsolable wife. “At 12 midnight or 1 a.m., I am reminded of my [deceased] child, I start crying. I do not know when I fall asleep while crying.”

In the case of Aman, such an experience of loss of relationship may have an overpowering or overwhelming impact. This impact may render the past and immediate future difficult to be comprehended by the survivors. In Priya’s analysis, despite being overwhelmed, Aman also shared a sense of fulfilment over the martyrdom of his son. He also shared a new enabling meaning in life through culturally valued beliefs of taking care of one’s family.

For Priya, a social-constructionist analysis into exploring how trauma in post-disaster settings affects the continuity of selfhood goes beyond the traditional psychological PTSD diagnosis and generates the experiences of suffering and healing.

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

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This week we explore Lone Grøn’s The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time. Grøn explores moral work and moral selves in the context of the obesity epidemic and weight loss processes. Cheryl Mattingly’s notions of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here) explore moral cultivation over time that cannot be disconnected from notions of biographical and narrative self. Building off Mattingly’s concepts, as well as philosopher Bernhard Waldenfels’ phenomenology, Grøn proposes the notion of a responsive self.

Grøn begins by introducing Rita, a participant in the obesity program at The Lifestyle Center, a Danish patient school which teaches self-care, diet, and exercise practices to people suffering from or at risk of what is termed “lifestyle-related diseases.” Grøn explores Rita’s reflections on obesity and weight loss, with specific attention to the transformation in notions of self, agency, and morality from fieldwork between 2001-2003 and 2014-2015.

Rita asks herself questions about her weight loss struggles, such as, “Why don’t I grow-up enough to take responsibility for my own well-being? Why is what I know to be the right thing to do a million miles removed from what I do in reality?” References to fighting the evil will or desire of your body, to sinning and backsliding, are plentiful and situate weight loss in the domain of morality. This places the concerns and reflections on weight-loss within broader historical and cultural ideas on self, agency, and morality, asking what kind of self one is able to be in the face of conflicting wills and moral demands.

Grøn takes up an argument that Mattingly put forward and developed, namely that moral cultivation over time cannot be disconnected from a notion of self.  Up until the last decade of the second millennium, attention to the relationships between body weight, food, and health were scarce in a Danish setting marked by cultural practices and values of “hygge,” that is, socializing by sharing food and alcohol, often to excess. Over the past two decades, this relationship has changed dramatically, and the consumption of food and drink have become morally charged in all corners of Danish society, from family spaces to the widespread network of institutions constituting the Danish welfare system. Further, a politically announced “paradigm shift” in the beginning of the second millennium in Danish health care services shifts attention from the treatment of acute diseases to the prevention of chronic diseases.

Grøn states that in many ways being obese has become an uninhabitable position. What used to be big and cozy (“hyggelig”) has become obese and alien. In the face of overwhelming personal and family histories of unsuccessful attempts at weight loss, temporary success is usually followed by increasing weight gain in a pattern widely documented in the scientific literature on weight loss processes over time. Both personal and family experience and scientific evidence define success as improbable, yet families struggling with obesity continue to experiment against the odds all the same. Thus, for Grøn, life itself becomes a laboratory.

Taking the experienced and biographical self seriously has allowed acknowledgement of the immense work of moral experimentation that Rita has engaged in over a lifetime. Furthermore, many other events and projects make up her life, including the cultivation of healing powers, of a garden of flowers, as well as of a home, family, and work life. This picture of Rita’s moral self could easily be lost if we were only concerned with the “obese” self, which can be constituted through workings of the bio-power and governmentality techniques of the Danish welfare state.

Grøn concludes by detailing the characteristics of the responsive self, emerging within the demand response dynamic. The responsive self displays both an event form that persists over the years (“I respond, therefore I am”), but also changes in terms of the content of the response. Thus, the notion of the responsive self stresses equally the suffering and the agentive dimensions of action—”an active passivity and passive activity.”

Lone Grøn is a Senior Researcher at VIVE The Danish Centre of Applied Social Science in Denmark, as well as a Senior Project Manager at KORA. She has done extensive anthropological research and ethnographic fieldwork on patient perspectives on chronic diseases, obesity, and behavioral change, highlighting the complexities of health work in the contexts of everyday lives. Her recent areas of research concern include social contagion in epidemics of non-communicable diseases and conditions, specifically in relation to kinship, relatedness and obesity; vulnerability and inequality in old age and the search for the good old life; and theoretical developments within philosophical and moral anthropology as well as phenomenological approaches in anthropology, which serve as the epistemological ground for experience-near and close-up studies of patients, citizens and families.

Books for Review: Vol 41, Issue 2

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

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

Melissa L. Caldwell

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

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

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

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

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

Keren Friedman-Peleg

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

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

Chapters include:

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

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

University of Washington Today: Q and A with Janelle Taylor

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Yesterday we highlighted Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry entitled Engaging with Dementia: Moral Experiments in Art and Friendship, available here. In this post, we follow up with a link to a recent Question & Answer session with Taylor by Kim Eckart, posted on the University of Washington Today website. Included with the Q & A interview is a video with Taylor entitled “How friendships evolve when one person has dementia.” In the video, Taylor discusses her research and the implications of the moral challenges taken on by people who have friends with dementia. Visit the UW Today post here.

Article Highlight: Vol. 41, Issue 2, “Engaging with Dementia: Moral Experiments in Art and Friendship”

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This week, we are featuring an Article Highlight written by Monica Windholtz, an Integrated Graduate Studies student in the Anthropology and Bioethics departments at Case Western Reserve University. Monica highlights Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry (Vol. 41, Iss. 2), entitled Engaging with Dementia: Moral Experiments in Art and Friendship. The article examines activities and social circumstances used to involve people with dementia in the world. Taylor depicts the steps involved in creating ‘moral experiments’ that plant patients with dementia in life. Through interviews with caregivers of people with dementia, Taylor explores the role of art and community in engaging those with dementia.

In this article, Taylor analyzes the experiences of individuals with dementia as relayed through the narratives of their caregivers. The article begins with the concept of media portrayals of dementia. Dementia is typically not represented well in the media, with stories devoid of “either subtlety or compassion” (285). In 2014, Julianne Moore received critical acclaim and an Academy Award for her role as the titular character in the film Still Alice, based on a book. The book and movie both chronicle the decline of Alice Howland, a brilliant scientist, as she suffers from early-onset Alzheimer’s Disease. While her husband and two oldest children are unable to confront the changes in Alice and focus only on treatment, her daughter Lydia attempts to understand her mother and engage with Alice’s new world. The article highlights Lydia’s artistic interactions with her mother to introduce the concept of the positive impacts of art and relationships to those with dementia.

While there is currently no effective cure for dementia, caregivers attempt to guide those with dementia to live full lives. The arts have especially served as a way to engage people with dementia, using programs in “storytelling, poetry, painting, dance, theater, [and songwriting]” (287). These programs engage and enrich the lives of individuals suffering with dementia. Artistic forms of expression help to imbue the lives of dementia patients with meaning. In Seattle, such programs to connect with dementia patients have been increasing.

Taylor labels these programs as “moral experiments,” following the work of Cheryl Mattingly where experiments are created by people trying to do the right thing (289). By attempting to enrich the lives of those with dementia, artistic programs are exploring new ways to bring meaning to their daily experiences.

Through an analysis of her interviews, Taylor recounts the experiences of those who have served as caregivers for family members or friends with dementia. In one case, a woman named Janet offered to help engage her friend’s husband, who was suffering with dementia. Their interactions formed a strong friendship between Janet and the husband, enabling him to still feel a sense of community, even as a patient with dementia.

Taylor found that caregivers and friends of those with dementia often see themselves as modeling or teaching proper behaviors to the rest of society, which may exhibit apprehension or discomfort when engaging with dementia patients. Since these anxious attitudes are common, caregivers may have interventions with their social groups or instruct others in how to interact with the individual with dementia. According to Taylor, people should attempt to interact with dementia patients, as they still understand the social environment, even if the context is not clear. Thus it is important for communities and social groups to still recognize the person with dementia in social settings.

Another striking example of people coming together was with the caregivers of Jacqueline, an immigrant woman in Seattle. Jacqueline had relied on the care and help of her mother in the home for many years, but soon after her mother’s death Jacqueline developed dementia. Those that knew Jacqueline were drawn into greater involvement in her life because of her dementia, and helped with the tasks her mother had otherwise taken care of. The group even created a calendar to organize their efforts to aid her.

The Still Alice novel uses the motif of a butterfly to reflect the theme of transformation while still being the same being. As discussed by Taylor, one caregiver of a dementia patient referred to the group that sought to improve the patient’s life as their ‘cocoon.’ The article reflects on the prominent transformations that patients with dementia undergo, and how cocoons and butterflies can both serve as symbols for the moral communities that protect and engage the patients.

In conclusion, Taylor reflects how Still Alice shows that it is not only science and medicine that can improve the lives of those with dementia. Engaging dementia patients through art and the community can help to improve their lives. Finally, there is further room for anthropologists and other researchers to understand and document these other forms of support and improvement.

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

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

Photo via UNM Press

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

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

Chapters include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References Cited:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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