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.
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.
This week we explore Lesley Sharp’s The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care. Sharp asks, “Why do lab monkeys watch TV?” This paper examines the prevalence of televisions in primate housing units based in academic research laboratories. Within such labs, television and related visual media are marked as part of welfare and species-specific enrichment practices intended for research monkeys. In many research centers, television figures prominently in the two inseparable domains of a lab monkey’s life: as a research tool employed during experiments, and in housing units where captive monkeys are said to enjoy watching TV during “down time.”
Sharp engages visual media as a means to uncover and decipher the moral logic of an ethics of care directed specifically at highly sentient creatures who serve as human proxies in a range of experimental contexts. Sharp suggests this specialized ethics of animal care materializes Cheryl Mattingly’s notion of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here), where television mediates the complicated boundary of species difference among the simian and human subjects who share laboratory worlds.
Sharp starts by discussing that scientific interest in primate theory of mind in a range of disciplines, especially within the fields of primate behavior, cognitive psychology, and experimental neuroscience. In the United States, chimpanzees are widely accepted as exemplifying “sentience” in non-human species. Television figures prominently within a larger arc of primate welfare in facilitating interspecies encounters within modern laboratory science.
In this paper, Sharp is most concerned with the moral sentiments of human workers who interact with lab-based primates, specifically research macaques. Because of their affective power, animals offer a powerful means by which to access “everyday” or “ordinary” ethics. Monkeys inspire specialized responses among lab personnel, including researchers, lab-based technicians, and animal technicians or “caretakers,” who together consistently underscore these creatures’ evolutionary proximity to us, alongside their being highly “sentient” beings. These understandings have a significant bearing on how personnel introduce, interpret, and modify notions of welfare and care in the laboratory.
As early as the 1930s, animal behaviorists and psychologists showed silent clips from films and cartoons to a variety of primate species to measure their perceptions of and “responsiveness” to “moving pictures.” Yet the choices appear to have been based on various assumptions: that a non-human species might find moving pictures interesting; that at least some primate species were capable of reading these images for what they were; and that visual media might evoke strong emotional responses in a viewer. Conducting various experiments with both still and moving color images that were in or out of focus, researchers showed to a dozen restrained juvenile and adult rhesus macaques 16mm films, such as a caged, female and male pair of rhesus macaques eating, climbing, and threatening a photographer, and a clip from a Woody Woodpecker “Indian Whoopee” cartoon episode.
By the 1950s, these experiments were decisively entrenched in a scientific logic that presumed film might evoke emotional responses in primates, and that they might also offer clues for deciphering human psychology. As such, apes and monkeys could stand in as proxies for human subjects, where visual technologies employed as compelling research tools could effectively reconcile species difference. Over the course of less than a century, television’s value as a research tool in laboratory settings became related to ideas about how best to distract or amuse lab-based primates in nonexperimental contexts, referred to as “down time.”
Sharp states that during laboratory experiments, visual technologies are used as interactive devices where, for example, a monkey works alone at a monitor and solves a sequence of problems where responses are digitally recorded by a researcher and transformed into data. In contrast, within a housing room, visual technology is marked by comparatively passive engagement, where a monitor is mounted nearby to allow monkeys to see and watch TV. Sharp explains that television is a literal manifestation of the moral laboratory when lab personnel must work to establish best practices, set against the unavoidable paradox that they are working with lab-based macaques who are viewed as “neither pets nor wild animals.”
In Moral Laboratories, Cheryl Mattingly argues for the addition of a “first person virtue ethics” in her analyses of the everyday struggles of disempowered people in contexts of unending suffering. As Mattingly explains, even seemingly dull decisions regarding the “care of the intimate other” may bring about ethical dilemmas and an associated complex reasoning. Mattingly uses the concept of “moral laboratory” metaphorically for defining an “imaginative space” of ethical experimentation, impacting possibilities for transforming the self.
Sharp proposes a slight variation, involving the literal understanding of the “moral laboratory” as a way to describe primate research labs in academic neuroscience programs. The presence of lab animals is effective in uncovering the logics of scientific morality. The widespread use of primates in neuroscience comes largely from the deep-seated understanding that they are humans’ closest evolutionary “cousins” and, therefore ideal proxies for humans.
Television’s presence figures importantly in a “first person ethics” among lab personnel, standing out as a specialized welfare practice that demonstrates what Mattingly describes as the “care of the intimate other,” in this instance, across the species divide. With these statements in mind, Sharp probes this moral logic of care, where television demonstrates efforts to provide “a good [laboratory] life” to captive, highly sentient creatures. Television is generally understood as a suitable enrichment strategy for highly sentient creatures who can easily suffer from boredom and succumb to pathological, repetitive behaviors known as stereotypy, withdrawal, forms of self harm, or failure to thrive.
As intelligent creatures, macaques are understood as being “interested” in TV, and staff may spend significant consideration and imagination in trying to determine what makes for effective “monkey TV.” Yet the influence of visual technology in aiding animals to “flourish and thrive” may extend beyond the restrictions of a housing room and include experimental contexts, where television-as-research tool may similarly be described as a form of healthy “engagement” for animals, despite such engagement is also regarded as “work.” As one lab director explained, “lab work [itself is] a form of enrichment” because his macaques so clearly “enjoy” computers, regardless of context.
For Sharp, attention may truly signal interest or curiosity, but it may not necessarily specify pleasure or enjoyment. Furthermore, labs where staff regards television as “enrichment” have monitors engaged with a nonspecific monkey in mind, with the same video loop playing repeatedly throughout the day, week, month, or year. In response, Sharp does not ask what television viewing tells us about monkeys’ preferences, but instead questions what pervasive beliefs and assumptions about television say about lab-based humans’ understandings of subjectivity. Or, what might the supposed primate desire for television say about the morality of interspecies encounters in lab areas?
In conclusion, Sharp states that through an under-theorized theory of mind, television provides a powerful medium for fostering human-monkey relatedness. Television draws monkeys in close with humans while simultaneously ratifying the morality of lab animal “care” and “welfare.” Essentially, television brings them closer to us. Just as television transforms the macaque as “intimate other” into a humanized creature, animal caretakers through a specialized “first person ethics,” are transformed into moral beings as well.
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.
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.
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.
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.
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.