The capacity to feel and express themselves in response to worldly surroundings is a defining feature of who a person living with dementia is, and can have profound effects on the ways in which they think, act and express creativity. Drawing on a year of intensive collaborative work with residents living with dementia in an Orthodox Jewish care home in London, I extend our perceptions and understandings of how a couple experiences their day-to-day lives, with particular attention paid to their affective practice in creativity. I demonstrate how the affective creativity of the couple emerges, circulates, and transforms as a spouse’s dementia develops, whilst feeling bodies continuously (re)make relations and familiarize themselves with the immediate surroundings through the making of artworks.
While the links between colonial psychiatry and racism figure prominently in histories of the diagnosis, treatment and institutionalisation of the mentally ill in Africa, there is an absence of patient-centred accounts, in the analysis of the efforts of the colonial-era subjects themselves to be pro-active not merely as the mentally ill, by clinical or court definition, but as persons embedded in social relationships with their kin and significant others. Moreover, despite an emerging scholarship, little is known of the experience of European settlers. In this respect there is a need for a more balanced representation, one that shows the ambivalence of colonial psychiatry and its reach into the lives of colonial subjects, Africans and Europeans alike. In this paper I focus on the narratives of a settler in German South West Africa and her efforts to escape diagnosis and institutionalisation. In building on a feminist approach to illness narratives, in particular on the idea of bearing empathic witness, I will explore the ways in which illness narratives can reveal the complex moral and political economies of the colonial world.
kylie valentine, Asha Persson, Christy E. Newman, Myra Hamilton, Joanne Bryant, Jack Wallace
Programs and policies are increasingly framed by the logics of “evidence-based policy,” a term subject to critical scrutiny and change after it emerged as an explicit valuing of specific types of quantitative data as objective, and a devaluing of most types of qualitative data. The transfer of “evidence-based” approaches to drug policy was mobilized by a distrust of people who use drugs, and of people who work with them. This distrust remains important, but contemporary policy also mobilizes individual narratives and lived experience through the growing use of biographical stories. Contemporary drug policy, like other policy areas, is also increasingly constituted by changing forms of technology, through new types of data use and data linkage, and of digital and social media. In this article, we consider the current and likely future impacts of changes to policy. We examine two Australian policies: the Australian Priority Investment Approach to Welfare (Try, Test and Learn), and the child protection reform, Their Futures Matter. Both use the “investment approach” to calculate policy costs and aims, represent important developments in the policy figuring of populations, and affect the well-being of many people who use drugs. Based on analysis of these policies, and interviews with people who use drugs who participated in a qualitative study on blood-borne virus serodiscordance, we ask, what are the likely effects, risks, and benefits of these changes for people who use drugs and others subject to public scrutiny and distrust? We argue that as long as the stigmatization of drug use remains prevalent, it is unlikely that the potential for more sophisticated and just recognition of the complexity of drug use will find a place in the forms of information and knowledge recognized in policy as evidence
Marion Selfridge, Lisa Mitchell, Alissa Greer, Scott Macdonald, Bernie Pauly
Youth who use drugs (YWUD) are likely to encounter the police and experience victimization within those encounters. Negative experiences of police among youth can dramatically undermine youths’ trust in police, making them unlikely to ask for help when they need it. In this article, we use Rance and Fraser’s concept of “accidental intimacies” between staff and people who inject drugs arising in encounters within supervised consumption sites. Their exploration of Sarah Ahmed’s work on the social productivity of emotions argues that new subjectivities that counter or transform stigma and shame surrounding drug use can occur from the space between individuals. For Ahmed “emotions do things, and work to align individuals with collectives—[linking] bodily space with social space—through the very intensity of their attachments.” During 2017–2018, 38 youth (aged 16–30 years) who use drugs in three cities in British Columbia, Canada, were interviewed to explore their encounters (both positive and negative) with police and how these influenced their perceptions of police. In this article, we assert that the dynamic of “we” and “them,” of the YWUD and police, is constituted in part through the powerful emotions created and confirmed by negative bodily encounters where the bodies of youth and police collide through physical and/or verbal contact. The repetition of emotions and objectification through stigma within their communities force some youth to repeatedly confront harmful subjectivities. Rance and Fraser’s work provides possibilities for shifting these stigmatizing subjectivities. For change to occur, addressing the historical and present realities that impact YWUD will help facilitate and enhance more respectful communication and interactions between YWUD and police. Bodily encounters may also present opportunities for both YWUD and police to reflect on the subjectivities that reinforce and are shaped by their negative interactions with one another. Incremental change may be possible as we find new meanings in youths’ understanding of and compassion for police and their work.
On several occasions, the People’s Republic of China refused to share influenza viruses isolated on their territory with the World Health Organization pandemic flu surveillance system. Scholars in STS and allied disciplines have described these disputes as examples of growing conflict between global health norms of free exchange and Asian state claims of viral sovereignty. However, the discussion has largely overlooked the fact that laboratories in China freely shared genetic sequence data from isolated viruses, even when they refused to ship physical samples, a fact that complicates the opposition of open data and viral sovereignty with the different material forms of the physical sample and the nucleotide sequence. This article provides a comprehensive comparison of the heterogeneous circulations of influenza virus samples and virus gene sequences in global health influenza surveillance and argues this difference is rooted in the different knowledge-control regimes designed for exchanging samples and sequences. Engaging with debates on the position of Asian science within global scientific circulations, the article suggests that Asian scientists confront a multiplicity of global scientific infrastructures and do not necessarily rely on the authority of nation-state sovereignty to reshape global exchanges.
Sung Hwan Kim; Hyomin Kim; Sungsoo Song
Through a public engagement exercise held in 2017, 471 Korean citizens decided to resume construction of two nuclear reactors. This article examines the white paper, academic articles, and interview accounts to discuss how distinct groups in their contexts articulated “lay knowledge” as the basis of participatory science and technology governance enacted in Korea. Reflecting on both Brian Wynne’s emphasis on public meanings and the STS literatures’ attention to lay actors’ knowledge-ability, the article reveals the articulation of “lay knowledge” as a process of simultaneously empowering and disempowering the lay public.
Endometriosis, as a widespread gynecological condition, affects an estimated 1 in 10 women and yet has a worldwide average diagnosis length of 7.5 years. Causing incapacitating pain, among other associated manifestations, the condition severely impacts on women’s lives. This article uses online survey data to investigate how pre-diagnosis endometriosis pain is conceptualized and articulated in order to explore communication challenges reported in early consultations that can potentially be seen to play a role in diagnosis delay. The findings of this study indicate that women feel that they do not have the appropriate tools to describe their pain and, in many instances, feel dismissed therefore prolonging diagnosis. The article finds that the majority of the pain descriptors identified use elaborate metaphorical scenarios to convey the intensity of the pain and concludes with some reflections on the issue of metaphorical language in endometriosis pain communication practices while calling for interdisciplinary work in order to devise appropriate tools for endometriosis pain communication.
Sathyaraj Venkatesan, Anu Mary Peter
Socio-cultural rigidities regarding the shape and size of a woman’s body have not only created an urgency to refashion themselves according to a range of set standards but also generated an infiltrating sense of body dissatisfaction and poor self-esteem leading to eating disorders. Interestingly, through an adept utilisation of the formal strengths of the medium of comics, many graphic medical anorexia narratives offer insightful elucidations on the question of how the female body is not merely a biological construction, but a biocultural construction too. In this context, by drawing theoretical postulates from Susan Bordo, David Morris and other theoreticians of varying importance, and by close reading Lesley Fairfield’s Tyranny and Katie Green’s Lighter than My Shadow, this article considers anorexia as the bodily manifestation of a cultural malady by analysing how cultural attitudes regarding body can be potential triggers of eating disorders in girls. Furthermore, this article also investigates why comics is the appropriate medium to provide a nuanced representation of the corporeal complications and socio-cultural intricacies of anorexia.
Judy Z Segal
The contemporary health subject, often described as a new, empowered patient, is not simply a character in a story of progress toward knowledge and power, away from credulity and passivity. Before the 20th century, and the assertion of a medical system that became frankly paternalistic, laypeople adjudicated on many matters of illness and its treatments. That is, 18th- and 19th-century health subjects were empowered too, and studying them, especially as consumers of health products, helps us develop a more nuanced account of our current medico-commercial selves. Comparing historical advertisements for “patent medicines” and contemporary direct-to-consumer ads for prescription pharmaceuticals, this essay contributes to such an account. It identifies strategies that drug marketers have deployed over centuries to persuade consumers to buy their products, and it tracks a rhetoric of interpellation in advertisements that not only address but also constitute health subjects. The goal of the analysis is to increase alertness to our own susceptibilities to pharmaceutical ads and adjacent rhetorics of health and illness.
Ruth Bailey, Karen Lowton, Sasha Scambler
Taking a social model of disability approach, this article explores how disabled people negotiate barriers in the large, modern hospital settings typically found in complex healthcare systems. While there is evidence of intractable barriers in the United Kingdom’s National Health Service, little is known about the actions disabled people take in the face of barriers and the immediate effects of doing so. Analysis of data from a qualitative study of disabled people’s healthcare encounters is presented. This draws on the concept of threats to embodied well-being to understand how disabled people perceive barriers and the influence this perception has on barrier negotiation. It demonstrates that some barriers are unique to healthcare and that these place disabled people in situations where their well-being is threatened. Despite these situations being inherently disempowering, disabled people are forced to take whatever action they can to protect the embodied self. We theorise that barriers are created inadvertently by the design, organisation and healthcare practices characteristics of modern hospital settings. Effective barrier removal requires understanding not only their impact on disabled people’s embodied well-being, but also the political, policy and social relations implicated in their creation.
Kritika Poudel, Pramod Subedi
Background:Public health concern is increasing with recent rise in the number of COVID-19 cases in Nepal. To curb this pandemic, Nepal is facing some forms of lockdown, encouraging people to implement social distancing so as to reduce interactions between people which could eventually reduce the possibilities of new infection; however, it has affected the overall physical, mental, social and spiritual health of the people. Methods: Published articles related to psychosocial effects due to COVID-19 and other outbreaks were searched and reviewed. Conclusion:While many countries are supporting their citizens with sophisticated health safety-nets and various relief funds, some developing countries have unique challenges with vulnerable populations and limited resources to respond to the pandemic. This review presents the consequences of pandemic and lockdown on socioeconomic, mental health and other aspects in Nepalese society.
Human tower building (castells) is a two‐hundred‐year‐old traditional sport in Catalonia (Spain), which has boomed since the democratic Transition (1975) as a national symbol and low‐cost intergenerational pastime activity. In 2006, however, a child performer died as a result of a collapse. Catalonia responded with profound grief, and the human tower community embarked on a process of ‘overcoming’ (superació), whose success was made contingent on the iconic outcome of towers ritually performed throughout a year and a half. Performers produced and deployed cultural meanings of verticality, and operationalized them for bereavement and meaning making. The case inserts the iconicity of body practice in anthropological debates about death in three ways. First, the verticality and body experience of tower building allowed the bereaved community to imagine life, death, transcendence, and ‘resurrection’, thus establishing continuing bonds and a social afterlife. Second, the structural completion of towers lent itself to stage‐ and task‐oriented interpretations of bereavement, whereby each tower level was a task the community had to execute to proceed to the next stage of bereavement. However, and third, mourning through sport performance also acknowledged the uncertainties of those cultural scripts of bereavement through the performative contingencies of the outcome of tower building.
When people with widely diverse bodily characteristics collaborate in dancing together, an exploration and communication of movement and embodied knowledge takes place through dialogue and shared practice. Engagement in these activities develops participants’ awareness of and appreciation for kinaesthetic complexities and diverse embodiments, promoting an understanding of bodily difference as contributing to, rather than detracting from, the realm of physical arts and society as a whole. Based on fieldwork conducted in Israel and the United States with integrated dance projects bringing together people with and without disabilities, this article offers an ethnographic analysis that continues the anthropological endeavour of revealing the ways kinaesthetic knowledge (awareness and knowledge of the movement and spatial orientation of one’s body) is fostered. Introducing disability into movement theory, I offer an understanding of movement/stasis as a spectrum of ways of moving, looking at what happens when individuals who are different from one another engage in shared, critical reflection upon their movement practices.
Much anthropology has considered the social embeddedness of medical systems, personnel, and practices and the political subjectivities that may arise among health workers. I explore what medical citizenship looks like under conditions of settler colonialism in West Papua based on an ethnographic study of Dani (Balim) and Lani HIV nurses and NGO volunteers who see themselves and their activities as part of a broader effort to save Papuans from extinction. In particular, HIV work emerges as a biosocial obligation, meaning that workers give their expertise, attention, compassion, and treatment networks to people with HIV in the name of ensuring the vitality of the wider population, but giving care is not altruistic. As HIV workers respond to erasure, constraints, and racism, they put themselves at the centre of HIV care webs. ‘Traditional’ technologies transform healthcare encounters and challenge strategic ignorance about the epidemic. A close navigation of global health and settler power allows for flexible, independent, even surreptitious HIV practices that are deceptively radical and disruptive. Papuan HIV workers’ medical citizenship is encompassed by and expresses vernacular sovereignties.
Peter Steggals, Steph Lawler, Ruth Graham
There is a growing recognition that nonsuicidal self-injury commonly incorporates communicative and interactional dimensions. But regardless of whether we approach self-injury within the terms of deliberate interpersonal communication, it is undeniably something that conveys a significant impact into the social and communicative field between people. As such, it is something that can be approached and analysed as communicative in this more general sense. In this paper, we draw on 13 in-depth qualitative interviews with the parents of people who self-injure, conducted for a larger pilot study, to explore some of these more general communicative processes, spaces and impacts associated with self-injury. By providing a phenomenologically informed examination of parents’ experiences, we argue that self-injury is in fact a richly communicative phenomenon, albeit one that cannot be adequately mapped using the traditional sender–receiver communication paradigm. To provide a more nuanced mapping, we look beyond this paradigm to include more subtle, ambiguous, pre-reflexive and bodily forms of communication. Indeed, self-injury offers a particularly powerful case study with which to think through a more complex model of communication, one that connects the interpersonal, intersubjective and intercorporeal levels, and that, as such, is more appropriate to the sociologies of everyday life and embodiment.
Paolo Totaro, Domenico Ninno
The theory of numbers, the theory of computation and well-known biological and neurological studies on cognition and consciousness all indicate the concept of recursion as their common denominator. Mathematical recursion owes its meaning and properties to a dual relationship between its results, which always constitute a sequence, and the operator that generated them, which is instead invariant. This article proposes that this duality in recursion originates from the duality between the biological homeostatic equilibrium in living systems and the adaptive physico-chemical changes required to sustain such equilibria. Such duality gives order and meaning to the experiences of a living system. One of the many implications of this innovative perspective is that this duality can decouple computational results from our intuitive order relations, and that this can cause a rarefaction of the capacity of digital systems to convey communication and favour adaptation to the environment.
This paper examines the politics behind algorithmic ordering in social media, focusing on the advertising logic behind them. This is explored through a practice I call rhythmedia – the way media companies render people, objects and their relations as rhythms and (re)order them for economic purposes. As a case study I examine the way the Facebook Immune System algorithm orchestrates people’s mediated experience towards a desired rhythm (sociality) while filtering out problematic rhythms (spam). This anti-spam algorithm shows that it is important for Facebook to understand people as rhythms and assemble a dynamic database from their mediated experiences, to convince advertisers that they know when and where people do things. People’s rhythms become a product that advertisers pay and bid for through Ad Auction to intervene in specific moments and shape people’s experience. Thus, the company can shape, manage, and filter specific rhythms to order sociality that brings more value.