Article Highlight: Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

Posted by neelymyers

This week on the blog we are highlighting a paper by M.A. Rubel, A. Werner-Lin, F. K. Barg, B. A. Bernhardt, titled Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results. The authors completed phone interviews with women and their partners who had received positive prenatal microarray testing results. The authors then analyze the data using modified grounded theory, discussing the theme of cultural expert knowledge and the implications on research and practice of prenatal testing. They close by recommending a future assessment of informational needs before testing to aid both the patient and their partners.

The authors begin by describing the increase in the use of prenatal genetic testing by pregnant women. Potential methods of genetic testing include invasive, non-invasive, and integrated screening for various potential fetal anomalies or genetic conditions. Chromosomal microarray, also called prenatal microarray, is a prenatal test that is used to “detect copy-number variants not detectable by conventional cytogenetic” (Rubel et al, 2017, 383). These test are recommended by the American College of Obstetrics and Gynecology if an anomaly is found via ultrasound. Parents feel anxiety after receiving a result of variant of uncertain significance, which can affect their decision-making following the result.

Western biomedicine helps to inform the biomedical expert knowledge (BEK) that holds a privileged status. BEK has roots in cultural and social conditions that shape how the knowledge is interpreted. BEK is founded in the idea that “aspects of the patient’s body and its symptoms are variables that can be independently and objectively evaluated and treated” (384). However, the genome may also be interpreted through a standard outside of biomedical knowledge. These other frameworks of medical knowledge may be used to interpret the testing done to women.

For this study, the authors recruited subjects for the study from the distribution of a pamphlet to pregnant women who received results from microarray testing. These women could then choose to participate in a short online survey that asked for demographic information and the results of the microarray test. The women who completed the survey and indicated interest were then e-mailed with information about the interview portion of the study. In total, 152 female patients completed the survey and 27 women were interviewed. 12 of their male partners were then subsequently interviewed.

Those who received positive results with uncertain or variable outcomes underwent a “state of crisis” after their results (388). They attempted to find the information related to their situation; some clinicians even provided the patients such biomedical information through literature and leaflets. Some patients were reassured by entrusting the health care providers to also provide the knowledge. Yet some providers may not wish to take a directive position and provide such materials.

Most of the patients interviewed expressed frustration that there was not enough information or resource provided initially by their clinicians. Patients that sought out BEK often turned to the internet. Those who considered themselves educated found it easier to search the information they could find online, yet there was still a general frustration about the BEK that was provided. Because of this frustration, patients often turned to other sources of understanding. The authors also extensively other ways of knowing and understanding their test results. These include embodied knowledge, spiritual beliefs, social networks, and a family history. These other types of knowledge other than BEK allowed the patients to understand their test results on their own terms.

The authors propose the term “Cultural Expert Knowledge” or CEK to encompass the types of knowledge that patients gained from outside the biomedical paradigm. This non-expert knowledge was some patients only information source. This provides a contrasting source of information to BEK and helps patients to understand their test results on their own terms. The authors close with a discussion about the difficulties of quantifying CEK since it is based on individual conceptions and outside of the biomedical sphere. They acknowledge the limitations of the study and provide further areas for expansion of the research base.

Article Highlight: Vol. 41, Issue 3, “Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum”

Posted by neelymyers

This week on the blog we are highlighting an article from our most recent edition, Volume 41, Issue 3, by Mihan Lee entitled Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum. The study explores the patients’ access to psychological support when dealing with a diagnosis of infertility. This is done through patient interviews and a cyber-ethnography of an online forum hosted by RESOLVE: The National Infertility Association. Lee explores the themes common across the different forum threads and the interviews to better understand the support systems of patients. Several themes emerge, such as the difficulty in obtaining treatment for many women because of resource burden and the stress of finding an option that fits within their parameters. The author proposes that not having the resources to access treatment silences women and denies them the support they came to the forum in search of.

Patients experience of their illness during and after treatment can be impacted by the social support in their environment. Patients in the contemporary age build social support networks on the Internet, turning to it for health information and access to resources to make decisions. Infertility patients can receive both the privacy and anonymity they often desire when using online resources for support. Those who are infertile may experience stigma for their condition or shame at not being the same as others who are fertile.

The author calls the main narrative of American infertility the ‘persistent patient’. This narrative is defined by a woman who wants a child and expresses her desire for through material resources. This requires that the woman have an education and access to financial resources so that she can access the resources available to medically treat her infertility. This creates a subset of women among the rest who are able to fit the ‘persistent patient’ narrative.

For the study, the author identified women to interview through posts on the sites infertility advocacy organizations. The fifty-five women interviewed were given a demographics questionnaire and then interviewed to find their patient narratives and discover both personal and professional views on infertility. Lee also conducted a “cyber-ethnography,” a critical analysis of posts in an online patient community. This was used to compare the effects of the Internet on the social support of the women. These were followed up with more refined interviews of patients.

For many women who experience infertility treatment, there is an extreme emotional burden. There is also a pressure experienced from the stigmatization of the condition. While infertility is a condition that affects seven million women, many women still feel like the condition is abnormal. Because of this, women keep their condition and experience private.

Within the forums, there was a running theme that friends and family did not understand the stress and struggle of infertility, which further stressed the women. The posters in the online community then became a support network for the women who were feeling an external lack of support. They were able to understand other women’s pain because it was similar to their own. However, this is offset by the validation of only certain narratives, especially through an assumed access to the resources to pursue treatment.

One type of thread, the “roll call” served as “an opportunity for all patients starting a certain type of treatment .. to connect with one another”. These roll calls allowed women of different experiences to connect with those who could offer them support through their parallel treatment journeys.

Interestingly, Lee notes that it seems as if those who most often frequent the boards are those who have had several treatment cycles. This juxtaposes the lack of discussion about the financial, time, and other resources necessary to pursue multiple treatments. Without these resources, some women cannot pursue the infertility treatments they would like. Data suggests that despite the lack of discussion, this is a prevalent problem. Most states do not require that insurance option cover infertility treatment and only 20% of employers cover ARTs.

The financial burden on women seeking treatment that was seen in the online forums was also reflected in the in-depth interviews as well. Some of the primary barriers to using ARTs was the overwhelming price. To be able to pursue these treatments, women must have type of disposable income that can go towards it. Lee suggests that the lower-income and uninsured women may either not be vocal or silenced by the culture of the forum groups. In the otherwise vocal community, posts about stopping treatment because of financial strain often went unanswered. And when there were responses, they often ignored the real constraints of financial burden.

When women bring up their concerns, the dominant narrative of the ‘persistent patient’ raises its voice louder than any of the other posters within the group. This adds further strain to the women who are worried about their financial experiences of infertility because the place where they have found solace rejects them. A counter-discourse emerges as women discuss the ways in which they have learned to cope with having a childfree life. Lee suggests that the forum should broaden its reach to offer for support as women adjust to their decision to stop treatment or inability to continue treatment.

Lee concludes that the role of the ‘persistent patient’ is one that is only available to a privileged demographic and that the socioeconomic factors that affect accessibility to resources also affects the ability of some mothers to have children. The condition of infertility is thus not experienced as a single thread and the nuances of different women’s backgrounds should be considered when hearing or researching their narrative.

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Article Highlight: Vol. 41, Issue 3, “Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates”

Posted by sonya.petrakovitz

This week on the blog we are highlighting a paper by Lesley Jo Weaver and Sarah Trainer entitled Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates. The authors build on sociologist Erving Goffman’s classic notion of stigma as a social phenomenon to investigate the stigma attached to two seemingly disparate conditions: food insecurity in rural Brazil, and obesity in the urban United Arab Emirates. The authors’ analyses emphasize that both circumstances are stigmatized because they represent a deviation from a deeply-held social norm. Additionally, in both cases, the stigma related with food insecurity and obesity is likely at least as damaging to personal wellbeing as are the biological effects of these conditions. To close, Weaver and Trainer suggest that these forms of stigma transcend individuals and are principally structural in their origins. Viewing stigma as a common element of the human condition refocuses the analytic lens toward structural-level factors that need to be addressed in order to improve human wellbeing.

Weaver and Trainer begin by discussing the theoretical grounding of stigma. Frequently defined as an indicator of disgrace signifying physical, moral, or social flaw, stigma is a powerful determinant of physical and mental health. Whether externally imposed by others or internalized and self-directed, stigma may come from or produce feelings of shame and embarrassment. Sociologist Erving Goffman described stigma as a “single social process uniting a dizzying range of conditions and behaviors… Stigma is stigma because it is ‘fundamentally discrediting’—that is, it is perceived to index something inherently negative about a person.”

Precisely because stigma draws on core beliefs held by mainstream society and has consequences for both physical and mental health, stigma should be a public health concern. Having a unitary conception of stigma can be operationalized as status incongruity—that is, the potentially measurable difference between culturally held attitudes of what people should be or achieve in a given realm, and what they are actually able to be or achieve.

Food insecurity is defined as a lack of secure access to safe and culturally appropriate foods at all times. Food security is often stigmatized since it may be a public symbol of poverty, or force one to have to obtain food in socially unacceptable ways. Even when not visible, food insecurity often generates self-directed stigma, often with damaging psychological impacts and experiences of status incongruity.

While clinically obese bodies are an epidemiological norm worldwide, they are rarely socially normalized in modern Western cultures. Further, evidence suggests that obesity stigma has increased along with increasing global obesity. Obesity cannot easily be hidden, and therefore stigma acts through both internal shame and external blame, which distinguishes it in profound ways from food insecurity. Stereotypically, obesity stigma stems from a combination of Western beauty ideals of aesthetic thinness and increased risk of ill health, along with moral beliefs that obesity signals lack of control. Further, obesity now can serve as a visible marker of poverty in many cultural settings, signaling status incongruity.

The authors discuss two different case studies—Brazil and the UAE—precisely because the severity of the differences between the settings exemplifies the powerful underlying similarities in the ways stigma influences health and well-being through feelings of shame, blame, status incongruity, and social isolation.

Weaver’s research in rural Northern Brazil focused largely around food insecurity and mental health. Ethnographic research conducted in urban Brazil establishes that bodies are read as high or low status, and weight and body shape are a key part of that. There is also an agreed-upon set of factors that signal the “good life.” These signals include things such as the ownership of a television and computer, participation in leisure activities, and the attainment of a desirable body shape. Some food items signal luxury and abundance while others carry stigma because they indicate humbleness, if not outright poverty.

Household food insecurity scores collected from pilot study phases were associated rather strongly with symptoms of depression among heads of household. The depression associated with food insecurity in this setting may be a result of the understandable stresses of having limited resources, but potentially also a result of the shame related to having to eat low-status foods or engage in non-normative food behaviors, such not being able to invite neighbors to eat or reciprocate sharing food.

Many people reported that they were unaware of food insecurity in the community, despite the authors’ documentation of its frequency. It appears in this setting that the harmful effects of food insecurity on mental health might stem more from self-stigmatization of one’s own food insecurity than from active stigmatization by others. The authors state they suspect that shame and self-stigma surrounding food insecurity motivates people to hide it.

In the United Arab Emirates, the authors’ discussion of stigma focuses on interwoven behavioral and aesthetic norms, and stigma related to perceptions of deviations from these norms. Food and eating patterns, as well as bodies and body norms, have seen particularly profound changes over the course of only twenty or thirty years of intense socioeconomic, structural, and cultural shifts. Despite the conspicuous consumption and wealth on display in the UAE, poverty and food insecurity are also present within the local population and foreign workers, but again the social pressure to hide such deprivation was intense.

Much more publicly considered in the UAE is the growing apprehension over obesity and associated chronic diseases. While “fatness” was once a desirable physical characteristic, especially in women who were expected to “fill out their skins” in order to display familial wealth, today young people reliably express physical female beauty ideals that aspire to an hour-glass shape, while stigmatizing bodies categorized as too fat or too skinny.

At issue here are “bodies that don’t conform.” The implications of lack of cultural consonance with body norms in this context are serious. In the UAE, the recipients of stigma are very thin or obese bodies, and in Brazil, the recipients are people experiencing food insecurity. The moral discourse around these issues, the ways in which this stigma is enacted, and the importance of specific types of stigma over others varies in important ways between research sites, however. The relative importance of internal versus external stigma in each case is likely related to the fact that one condition (food insecurity) can be hidden, while the other (obesity) cannot.

For the authors, a second common element linking these two cases of stigma is the fact that each signifies a departure from a social norm, accompanied by intense social isolation. Third, both food insecurity and obesity have well documented consequences for physical health, as well as important but poorly understood consequences for mental and social health. Weaver and Trainer states that these common features suggest stigma around food insecurity and obesity can be conceptualized as two “outlets” for the same social phenomenon: “health stigma.”

The authors conclude by asserting a useful implication of considering stigma as a single social phenomenon is that it refocuses away from the individual and toward structural causes of stigma. While the everyday issue of stigma is enacted on the individual level, stigma is only stigma because people concur at a larger population level that a position is stigma-worthy. Focusing on the commonalities between stigma experiences functions as an important reminder that stigma is not just personal but also collective. Policy implications of stigma-as-structure have largely been overlooked.

Article Highlight: Vol. 41, Issue 3, “Mental Health Outcomes of Psychosocial Intervention Among Traditional Health Practitioner Depressed Patients in Kenya”

Posted by sonya.petrakovitz

This week we are highlighting an article from our most recent journal issue, Vol. 41 Issue 3, entitled Mental Health Outcomes of Psychosocial Intervention Among Traditional Health Practitioner Depressed Patients in Kenya, by Christine Musyimi, Victoria Mutiso, David Ndetei, David Henderson, and Joske Bunders. Their study aims to determine the outcomes of using the evidence-based mental health Global Action Programme Intervention Guide to provide psychosocial interventions among depressed patients seeking care from Traditional health Practitioners (THPs). Their work is the first documented interventional study to investigate the outcomes of psychosocial interventions among THPs’ patients in Kenya. The authors argue that it is crucial to engage THPs in the care of patients with depression and other mental disorders in order to establish and maintain collaboration between THPs and conventional health workers to promote evidence-based care among marginalized populations.

During this study, Traditional health Practitioners (THPs) were trained to deliver psychosocial interventions to their patients screening positive for mild to severe depression on Beck’s Depression Inventory (BDI). The authors emphasize that THPs are trusted by community members and appropriately understand the community cultural and social norms due to their interaction with different individuals in their routine practice and the nature of traditional systems of care. Additionally, THPs’ services are usually more easily accessible and cost effective.

According to the authors, task-shifting can be defined as the rational redistribution of tasks among health workforce teams with an aim of making efficient use of available human resources for health. This approach has proved to be a very strong potential strategy for reducing global mental health challenges through identification and appropriate management of mental disorders. In a task-shifting model, THPs classified as traditional and faith healers may be incorporated into existing mental health services by using their cultural acceptability to deliver treatment. They may also be used as a way to mitigate the shortage of mental health specialists. THPs are widespread in Africa and are consulted for psychosocial problems.

Previous studies have shown that THPs use prayer, holy water, morality-based guidance, dietary advice, massage, and herbs as common treatment modalities. THPs have furthermore demonstrated willingness to collaborate with “conventional” workers in mental health care. For the authors, this willingness offers an excellent opportunity since consulting THPs is considered a more popular choice of first help-seeking contact for patients. Often, THPs do home visits, which is more convenient and acceptable to patients and family members. In addition, the consultation fee for THPs’ patients is either waived, paid in kind, in installments, or on recovery. As a result, THPs are considered to be reliable source for care and can still be sought in a more difficult financial situation.

The mental health Global Action Programme Intervention guide (mhGAP-IG) is a model-guide and helps non-specialists to identify and manage priority mental health problems, such as depression, psychosis, bipolar disorder, epilepsy, developmental disorders, behavioral disorders, dementia, alcohol use disorders, drug use disorders, suicide, and self-harm. Its efficacy has also been tested among non-specialized health workers, including traditional and faith healers in Africa, and shows a statistically significant improvement in knowledge among participants after training. The authors maintain that this is promising evidence that non-specialized health-care providers can be successfully trained to deliver a basic package of interventions for providing care and treatment for people with mental, neurological and substance use disorders.

This study involved training THPs to identify and deliver evidence-based mhGAP-IG psychosocial interventions to their patients screening positive for depression. A total of 377 patients screened positive for mild to severe depression using BDI were recruited into the study. Psychosocial interventions, such as cognitive behavior therapy or problem solving, were then described in detail to THPs. This gave the THPs an understanding of what to do, as listed under mhGAP-IG, in the depression component at the initial contact and one or two subsequent visits, depending on the severity of the patient’s symptoms. The outcomes of the intervention among THPs’ patients were measured at 6 weeks and 12 weeks from the initial assessment by determining the change in their depressive scores using BDI. Overall, the BDI mean score was 26.52 before intervention, and reduced significantly at 6 (13%) and 12 (35%) weeks after intervention.

Based on their research, the authors argue that patients seeking care from THPs are responsive to psychosocial interventions as delivered by the healers. Patients recovered symptomatically, showing significant improvements at all time points after treatment. The authors state that consistent with other studies, psychosocial interventions have been shown to reduce depressive symptoms in primary care settings.

The authors conclude that the overall improvement of the patients in their study at 3 months is higher than the response rates seen among depressed outpatients followed over a period of one year in public sector clinics in the United States. A systematic review on enhancing antidepressant therapy with non-pharmacological interventions directed at improving the treatment of depression by Oestergaard and Møldrup (2011), has demonstrated that psychosocial interventions such as psychotherapy produce superior results at follow-up in terms of preventing recurrence and yields effects that cannot be detected by antidepressants including the quality of interpersonal relationships and coping skills.

References Cited:

Oestergaard, S., and C. Møldrup

2011 Improving Outcomes for Patients with Depression by Enhancing Antidepressant Therapy with Non-pharmacological Interventions: A Systematic Review of Reviews. Public Health 125: 357–367.

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

Posted by sonya.petrakovitz

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”

Posted by sonya.petrakovitz

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.

University of Washington Today: Q and A with Janelle Taylor

Posted by sonya.petrakovitz

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”

Posted by sonya.petrakovitz

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.

Article Highlight: Vol. 41, Issue 2, “The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care”

Posted by sonya.petrakovitz

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.

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

Posted by sonya.petrakovitz

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.