Engaging with Dementia: Moral Experiments in Art and Friendship

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.     

Transgenerational health effects of in utero exposure to economic hardship: Evidence from preindustrial Southern Norway

We studied whether in utero exposure to economic hardship during a grandmother’s pregnancy has a transgenerational effect on her grandchildren's health condition. We used an individual-level three-generation data set covering people born between 1734 and 1840 in the municipality of Rendalen in Norway. We found a culling effect in which grandchildren whose grandmothers gave birth in years of economic hardship lived approximately ten years longer than grandchildren whose mothers were born in years of economic well-being. This impact was only observed among the grandmothers who belong to the lowest social classes. Our results also showed that in higher social classes, economic hardship during a grandmother’s pregnancy deteriorated her grandchildren’s health by “scarring” the mother’s health.     

The Gender of the Joke: Intimacy and Marginality in Murri Humour

ABSTRACT

Murri Aboriginal humour performances are expressive events in which bodily experiences of policing and agency are discursively commented on in ways that expose Australia's naturalised rationalisations of indigenous governance. Drawing on the ‘out-of-the-way’ position of an indigenous minority encapsulated in the body of the nation-state and the Murri body's intimate ‘out-of-the-way’ folds and crannies, Murri humour delimits and mocks the marginal location Murri people are imagined to spatially and morally occupy within Australia. This work examines how gendered humour renders the Murri individual and social body legible to and for a Murri audience. Such humour performances engage the local and the global, the modern and the traditional, and the hegemonic and the counter-hegemonic in ways that link intimacy, bodies and embodiments to these macro-processes. Unraveling such binaries produces a nuanced analysis in which embodied social actions and sly social critique are captured as they are experienced and expressed through humour.     

Cripping Safe Sex

Life Goes On (1989?C1993) was the first television series in U.S. history not only to introduce a recurring teenaged HIV-positive character but also to feature an actor with Down syndrome in a leading role. Drawing new connections among disability studies, queer theory, and bioethics, I argue that Life responded to American disability rights activism and the AIDS epidemic of the early 1990s by depicting sex education as disability activism. By portraying fulfilling sexual relationships for its disabled protagonists, Life challenged heteronormative and ableist underpinnings of marriage, sexuality, reproduction, and sex education and imagined transgressive queer/disabled alliances that often surpassed those of activists of its cultural moment. By representing homophobia, AIDS-phobia, and ableism as intertwined oppressions, the series conjured an expansive vision of sexual justice and pleasure, one that included and united teenagers, intellectually disabled people, and seropositive people??populations whose sexualities have generally been regarded as pathological or nonexistent.     

Beyond Critique: Rethinking Roles for the Anthropology of Mental Health

The current supremacy of the ‘bio-bio-bio’ model within the discipline of psychiatry has progressively marginalized social science approaches to mental health. This situation begs the question, what role is there for the anthropology of mental health? In this essay, I contend that there are three essential roles for the anthropology of mental health in an era of biological psychiatry. These roles are to (i) provide a meaningful critique of practices, beliefs, and movements within current psychiatry; (ii) illuminate the socio-cultural, clinical, and familial context of suffering and healing regarding emotional distress/mental illness; and (iii) act as a catalyst for positive change regarding healing, services and provisions for people with emotional distress/mental illness. My argument is unified by my contention that a credible anthropology of mental health intending to make a societal contribution should offer no opposition without proposition. In other words, any critique must be counter-balanced by the detailing of solutions and proposals for change. This will ensure that the anthropology of mental health continues to contribute critical knowledge to the understanding of mental suffering, distress, and healing. Such social and cultural approaches are becoming especially important given the widespread disenchantment with an increasingly dominant biological psychiatry.     

Autonomy and Why You Can “Never Let Me Go”

Kazuo Ishiguro’s book Never Let Me Go is a thoughtful and provocative exploration of what it means to be human. Drawing on insights from the hermeneutic-phenomenology of Martin Heidegger, I argue that the movement of Ishiguro’s story can be understood in terms of actualising the human potential for autonomous action. Liberal theories take autonomy to be concerned with analytically and ethically isolatable social units directing their lives in accordance with self-interested preferences, arrived at by means of rational calculation. However, I argue that such theories are simplistic abstractions from our human-life world, distorting the fundamental embodied, embedded, and relational nature of autonomy. When we attend closely to our concrete, lived existence we see instead that autonomy is about responding appropriately to others with whom we share a world. As we follow the path of Ishiguro’s central character Kathy H., we are shown how an awareness and acceptance of our existential finitude as precarious and fallible creatures is necessary for guiding such appropriate interactions. As Kathy grows and is affirmed into her life-world, which grounds and supports her Being, she moves from heteronomy to autonomy; from being moved by external laws to embodying those laws, thereby becoming autonomous. This is exemplified by her appropriation of the carer role, through which she responds in a fitting way to those with whom she shares her world, bearing the weight of and dwelling responsibly within our human condition.     

Balad el-Ziblé (Country of Rubbish): Moral Geographies of Waste in Post-revolutionary Tunisia

ABSTRACT

Waste sullies, physically and morally, polluting people and places, and defining or altering their position within social and spatial hierarchies. Given this polluting quality and the moral charge of the idiom of pollution, waste and its distribution are indicative of how places are imbued with moral judgment and at the same time waste illustrates how places themselves can become morally polluting. In the context of a waste crisis that followed the Tunisian Revolution of 2011, it is argued here that an attention to waste as material and symbolic category demonstrates the recursive relationship between materials, people, their thoughts and actions, in the moralisation of place. Examining this waste crisis in terms of a Tunisian moral geography of waste, which was established under colonialism and labels certain people and places as clean and dirty, reveals the dynamic and historically contingent nature of moral spaces and depicts them as sites for socio-spatial struggles that in themselves illuminate the revolution in novel ways. Finally, it is concluded that the polluting quality of waste spilled over the boundaries of Tunisia’s moral geography to morally sully the whole time period and political process of Tunisia’s transition.     

“Film!”—The Arab Revolutions and the Filmmaker as Amanuensis

In her recent memoir of the Egyptian revolution Ahdaf Soueif records how one day a woman came up to her on Tahrir Square and started instructing her on how to write down the “national epic” unfolding around them. Taking Soueif’s text as an allegory of the relationship between the individual and the people, I explore how an analogous process is enacted in one particular video shot in Cairo on January 25, 2011. Taken together, these two “texts” suggest the emergence of a distinctively revolutionary aesthetic, which is also a politics of obedience.     

Geheugenpoli’s in Nederland: Ontwikkelingen sinds 1998

Development of memory clinics in the Netherlands Aim Memory Clinics (MC’s) are multidisciplinary teams involved with early diagnosis and treatment of people with dementia. In order to attain more insight into the development of this kind of services in the Netherlands, we compared the data of two inventories, one of 1998 and the other of 2004. Results The number of MC’s increased from 12 to 40. The number of referrals per service has also increased. Dementia was the most important syndromal diagnosis. The focus is less exclusively on academic centres. An growing number of MC’s has structural collaborations with local service providers for mental health. Differences among MC’s exist with regard to the number of referrals per week, the intensity and duration of the diagnostic procedures and the proportion of people without dementia. There is much interest among MC’s to participate in a national network for harmonisation and quality control. Conclusion MC’s are an increasing part of standard care for people with early dementia and other cognitive disorders. Tijdschr Gerontol Geriatr 2007; 38: 237-245     

The validity and reliability of the Socioeconomic Status Instrument for assessing prostate cancer patients

Background: Because of the lack of consistency in the associations of the socioeconomic status (SES) of prostate cancer (PC) patients from diverse racial and ethnic backgrounds with PC health outcomes, I created the Socioeconomic Status Instrument (SESI) from the Demographic and Health Access components of the Behavioral Risk Factor Surveillance System 2004 Questionnaires and the socioeconomic indices of the subjects’ residential counties to better assess the SES of PC patients. Methods: The SESI was tested on 220 consecutive subjects with pathologically confirmed PC at the Veterans Affairs Medical Center in Houston, TX. A team that included an epidemiologist, a validation statistician/health services research scientist, and PC survivors assessed the content validity of the SESI. The construct validity of the SESI was assessed with factor analysis by extracting and analyzing 5 principal components based on the subjects’ individual responses on the assessment: county socioeconomic characteristics, individual socioeconomic characteristics, financial distress, increased domestic burden with limited earnings, and affluence. The internal consistency reliability of the SESI was assessed with Cronbach's alpha coefficients. Results: Based on the reviews of the SESI, all of the initial 10 items were retained. The correlations between individual responses on the SESI were similar to the results of previous studies. The 5 principal components that I assessed accounted for 71.5% of the variance. Factor loadings ranged from 0.66 to 0.98 and communalities ranged from 0.55 to 0.94. County socioeconomic characteristics accounted for 22.6% of the variance, whereas individual socioeconomic characteristics accounted for 14.6% of the variance. The overall Cronbach's alpha coefficient was 0.78. Conclusions: The SESI is valid and reliable. Accurate measurements of the SES of PC patients would provide better guidance for future research and care deliveries.     

WHAT IS IT TO BE A DAUGHTER? IDENTITIES UNDER PRESSURE IN DEMENTIA CARE

This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.     

Abdomen Posture and Flash Gesture Direction in a Female Synchronic Firefly <Emphasis Type="Italic">Photinus carolinus</Emphasis> (Green) (Coleoptera: Lampyridae)

North American Photinus fireflies use bioluminescent flashes to communicate an individual’s species and sex, and to attract potential mates. A female firefly responds to a male firefly’s courtship flash with her own species-specific flash. We used a photic stimulator to produce male-like species-specific P. carolinus LED courtship flashes. These evoked species-specific response flashes from a female. The female’s flashes were preceded by a flash gesture comprising a sequence of abdominal postural adjustments (pitch, roll, and yaw). These gestures changed her lantern’s orientation which, at rest, was downward towards the substrate. Our results demonstrate that these gestures mediate a lateralization of the female’s response flashes towards the direction of the stimulating LED. That is, she directs her response to the left of midline when stimuli are presented from her left, and similarly, she directs her response to the right of midline when stimuli are presented from her right. The directional aspect of the flash gesture adds a new perspective to the complexity of the behaviors associated with flash communication in fireflies. Lateralization of the flash gesture suggests that the female’s visual system processes information about the location of male’s flashes as well as their temporal pattern.     

Is Pseudo-Cushing’s Syndrome in a Critically ILL Patient “Pseudo”? Hypothesis and Supportive Case Report

ObjectiveTo propose a new hypothesis regarding the possible role of glucocorticoid excess in patients with an extended acute illness, based on a patient’s presentation and therapy in a critical care situation.MethodsWe present a detailed case report, review the related literature, and suggest the need for prospective studies to determine the appropriate intervention in critically ill patients with pseudo-Cushing’s syndrome.ResultsA 50-year-old woman with diabetes and obesity who underwent vertical banded gastroplasty had postoperative complications, including refractory gastrostomy leakage, peritoneal and abdominal wall infections, and multiorganism sepsis despite intensive antibiotic therapy and surgical drainage procedures. Her physical appearance, elevated and relatively nonsuppressible plasma cortisol levels, and radiologic study supported a tentative diagnosis of Cushing’s syndrome in a critically ill patient. Intravenously administered itraconazole and rectally administered aminoglutethimide were used to suppress endogenous glucocorticoid synthesis. Glucocorticoids were administered at dosages that provided 1/3 to 1/2 of her expected maximal daily cortisol secretion during her complicated hospital course. Insulin resistance declined with adrenal suppression and infection control, and wound healing improved dramatically. Adrenal suppression was discontinued, and she was reevaluated for hypercortisolism. Results of all studies for Cushing’s syndrome were normal and remained so 1 year later.ConclusionIn our patient, substantially increased glucocorticoid levels were associated with severe insulin resistance, retarded wound healing, and persistent infections. Suppression of endogenous cortisol production and replacement with more physiologic concentrations of glucocorticoid were associated with clinical improvement and appeared to contribute to her recovery. Review of the literature leads us to propose the following hypotheses: (1) that considerably increased stress-induced cortisol concentrations in critically ill patients may contribute to adverse outcomes and (2) that therapeutic suppression of the persistent and substantially elevated glucocorticoid levels in selected cases may be a beneficial therapeutic option. (Endocr Pract. 2007;13:153-158)     

Getting rid of interventions

According to James Woodward’s influential interventionist account of causation, X is a cause of Y iff, roughly, there is a possible intervention on X that changes Y. Woodward requires that interventions be merely logically possible. I will argue for two claims against this modal character of interventions: First, merely logically possible interventions are dispensable for the semantic project of providing an account of the meaning of causal statements. If interventions are indeed dispensable, the interventionist theory collapses into (some sort of) a counterfactual theory of causation. Thus, the interventionist theory is not tenable as a theory of causation in its own right. Second, if one maintains that merely logically possible interventions are indispensable, then interventions with this modal character lead to the fatal result that interventionist counterfactuals are evaluated inadequately. Consequently, interventionists offer an inadequate theory of causation. I suggest that if we are concerned with explicating causal concepts and stating the truth-conditions of causal claims we best get rid of Woodwardian interventions.     

« L’enfer, c’est les autres »: approche phénoménologique de la relation à autrui

Garcin famously retorted in Jean-Paul Sartre’s play No Exit, “Hell is other people”, l’enfer, c’est les autres. But what exactly did he mean? I would suggest that the play’s most quoted line can serve as the key to understanding, from a phenomenological point of view, the relationships between others and me, and in particular why theses relationships can be so trouble-some. Is it not generally because we ask of each other what neither can offer in response? Perhaps we should give up the expectation that others are our salvation and accept our own contingencies.     

Cartography and Clandestinité in Leïla Sebbar’s Shérazade: 17 ans, brune, frisée, les yeux verts

In this paper, I read Leïla Sebbar’s staging in her novel Shérazade: 17 ans, brune, frisée, les yeux verts of the resistance by children of North African and other immigrants in the early 1980s to the French state’s cartographic modes and documents of control. The paper will consider the many uses to which the map was put by the French state in its colonization of North Africa and particularly Algeria, and later in its attempts to control the banlieues its policies of citizenship and cartographic control yielded on the margins of Paris. In this context, I will explore the ways in which the novel’s characters, living clandestinely in a squatt, simultaneously resist, put to use, and even supercede state documents of control as they disrupt everyday life and conduct heists across the city of Paris. The paper will explore unofficial cartographies of Paris, from those afforded by the radios libres and alternative publications such as Libération and Sans Frontièrez, to oral and almost proverbial networks of knowledge criss-crossing the city of Paris, while also tracing the uses to which supplemental cartographic sketches and counterfeit identity cards are put in the pages of the novel. The paper will be in dialogue with theoretical and critical formulations of space, cartography, and state control put forward by Michel de Certeau, Henri Lefebvre, Michel Foucault, and Tom Conley. The paper will conclude with a consideration of the means and limits of resistance by the novel’s characters in the context of this body of theory and criticism.     

I Gave My Child Life but I Also Gave Her Death

The capacity for a complex inner life—encompassing inner speech, imaginative reverie and unarticulated moods—is an essential feature of living with illness and a principal means through which people interpret, understand and manage their condition. Nevertheless, as Nigel Rapport has pointed out in a recent edition of The Australian Journal of Anthropology (2008: 19 (3)), interiority largely remains a ‘terra‐incognita’ for social science, while anthropology lacks a generally accepted theory or methodological framework for understanding how interiority relates to people’s public actions and expressions. Moreover, as conventional social‐scientific methods are often too static to understand the fluidity of perception among people living with illness or bodily instability, I argue we need to develop new, practical approaches to knowing. By placing the problem of interiority directly into the field and turning it into an ethnographic, practice‐based question to be addressed through fieldwork in collaboration with informants, this article works alongside women living with HIV/AIDS in Uganda with the aim of capturing the unvoiced but sometimes radical changes in being, belief and perception that accompany terminal illness.     

Unemployment,deindustrialization, and ‘community economy’ in eastern Germany

Drawing from an evening of fieldwork at an eastern German Protestant churchin the rapidly deindustrialized city of Leipzig, this article finalyzes a discussion among church leaders, former ‘dissidents,’ and unemployed workers on the subject of ‘community economy’ (Gemeinschaftsökonomie), a concept people interpret to represent a potential solution to the crisis of mass unemployment. Such local debates on unemployment offer a frame for understanding the re-negotiation of labor and social welfare in eastern Germany following socialism's end. finalyzing this discussion within the context of theoretical debates on ‘civil society,’ I follow Burawoy's and Gramsci's lead in fillustrating that the imagined economic sphere of ‘community economy’ is an ideological battle ground, where hegemonic discourse supporting economic neoliberalism may be either reinforced or subverted.