Books for Review: Vol 41, Issue 2

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

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”

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


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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SfAA 2017 Conference Feature Part 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.