Images as catalysts for meaning-making in medical pain encounters: a multidisciplinary analysis
Deborah Padfield, Helen Omand, Elena Semino, Amanda C de C Williams, Joanna M Zakrzewska
The challenge for those treating or witnessing pain is to find a way of crossing the chasm of meaning between them and the person living with pain. This paper proposes that images can strengthen agency in the person with pain, particularly but not only in the clinical setting, and can create a shared space within which to negotiate meaning. It draws on multidisciplinary analyses of unique material resulting from two fine art/medical collaborations in London, UK, in which the invisible experience of pain was made visible in the form of co-created photographic images, which were then made available to other patients as a resource to use in specialist consultations. In parallel with the pain encounters it describes, the paper weaves together the insights of specialists from a range of disciplines whose methodologies and priorities sometimes conflict and sometimes intersect to make sense of each other’s findings. A short section of video footage where images were used in a pain consultation is examined in fine detail from the perspective of each discipline. The analysis shows how the images function as ‘transactional objects’ and how their use coincides with an increase in the amount of talk and emotional disclosure on the part of the patient and greater non-verbal affiliative behaviour on the part of the doctor. These findings are interpreted from the different disciplinary perspectives, to build a complex picture of the multifaceted, contradictory and paradoxical nature of pain experience, the drive to communicate it and the potential role of visual images in clinical settings.
Shifting understandings of labour pain in Canadian medical history
Whitney Wood
While pain in childbirth is a universal, cross-cultural, biological reality, individual experiences and perceptions of this pain are historically and culturally specific. At the turn of the 20th century—a key period in terms of both the medicalisation of birth and the professionalisation of obstetrics in the Canadian context—Canadian physicians understood and conceptualised ‘birth pangs’ in a number of varying (and at times competing) ways. Throughout the 19th century, doctors emphasised the broader utility of pain as a diagnostic tool and a physiologically necessary part of the birthing process. With the advent of anaesthetics, including chloroform and ether, however, a growing subset of the medical profession simultaneously lauded the professional, physiological, and humanitarian benefits of pain relief. By the first decades of the 20th century, shifting understandings of labour pain—and particularly growing distinctions between ‘pain’ and ‘contraction’ in mainstream medical discourses—underscored the increasing use of obstetric anaesthesia. Drawing on a broad range of medical texts and professional literature, and focusing on a key historical moment when the introduction and adoption of a new medical technology opened up possibilities for professional debate, this paper unpacks both the micropolitics and the macropolitics of shifting understandings of labour pain in modern Canadian medical history.
Pain as performance: re-virginisation in Turkey
Hande Güzel
The literature on pain has so far been primarily interested in chronic pain, medically induced pain and pain as an unwanted experience. However, pain is a more complicated experience and the lines between pain and pleasure are blurred in different contexts. In this paper, these lines are explored within the context of re-virginisation in Turkey by taking to its centre the meanings attached to pain through women’s online and offline narratives. Re-virginisation refers to the process women undergo in order to reclaim their virginity due to the expectation that women should be virgins at the time of marriage and to the persistence of the myth that virginity can and should be proved via bleeding during or right after sexual intercourse.
Based on semi-structured in-depth interviews and phenomenological and post-structuralist discourse analysis of online data, I argue that pain in the process of re-virginisation (1) is desired and sought-after and (2) is a gendered and temporospatial performance. Within this performance, pain manifests itself as a functional experience as well, especially as a marker of having been operated on, of having had a successful operation, as a reminder of this operation, and finally as an experience around which a community can be formed. Although pain can be functional at most stages of re-virginisation, when, where, and how it can be performed is determined intersubjectively.
Kari Campeau
Pain is an intensely subjective experience and one that is difficult for healthcare professionals to treat. Chronic pain, often diffuse, cyclical and involving many systems of the body, is often not well treated in a medical system that relies on discrete symptoms, identifiable causes, external pathogens and physician specialisation. Pain has its own problems specific to Somali diaspora populations, where chronic pain is prevalent but often undertreated, and where Somali patients face barriers of access to medicine. This study, conducted in partnership with a Somali women’s health centre, seeks to understand Somali women’s use of informal and formal networks of healthcare. Drawing from qualitative interviews with Somali, refugee women, this article identifies four emerging frameworks through which participants experience chronic pain: (1) pain as a symptom of exile; (2) pain and the strength to bear pain as issues of faith; (3) medicine as powerful, curative and fluid; (4) medical discrimination and exclusion.
Before narrative: episodic reading and representations of chronic pain
Sara Wasson
This article suggests that some illness experience may require a reading practice less concerned with narrative coherence or self-authorship, and more interested in the value of textual fragments, episodes and moments considered outside a narrative framework. Chronic pain can pose multiple challenges to the narrative orientations celebrated in both ‘survivorship’ discourse and classic medical humanities scholarship. In its recalcitrance to cure, its often mysterious aetiology and its complex blend of somatic, interpersonal and affective elements, representations of chronic pain can require a richer vocabulary of temporality. I draw on contemporary affect theory to augment the available critical vocabulary for the textual representation of protagonists’ temporal orientation within illness experience, identifying a language for the emergent present that resists a narrative form. Beyond identifying narrative ‘incoherence’, affect discourse gives a way to recognise the strained, equivocal labour of incoherence, of inhabiting a cryptic present moment. Affect theory’s attention to the emergent present may give a way to read incoherent ‘chaos’ outside from a narrative framework, not only as a dark, formless stage in a personal story. To expand our vocabulary for this position, I offer a term for a particular affective experience of the present amid repeated marginalisation: the temporality of thwarted connection. I illustrate how these concepts can enable an alternative reading stance by offering a brief analysis of Lous Heshusius’s hybrid autobiography and academic study, Chronic Pain from the Inside Out.
Drew Leder
This article proposes the benefits to be had from an unusual conversation: that between those suffering from chronic pain/illness and from long-term incarceration. Taking a phenomenological approach, a series of experiential commonalities are outlined: pain and illness, like incarceration, can cause (1) a constriction of lived space and the range of possible action; (2) a disruption of lived time, such that one is trapped in an aversive ‘now’, or ever trying to escape it; (3) isolation, as meaningful social contacts diminish or are ripped away; and (4) disempowerment and depersonalisation, especially when the ill person feels caught within a medical system that can be dehumanising in ways that echo prison life. Drawing on pathographies, and my published conversations from teaching philosophy classes in prison, I outline some of the strategies whereby creative individuals help relieve these modes of disruption. These include (1) adaptability, as individuals learn to live differently, but well, within the limits imposed by pain/illness or incarceration; (2) appreciative presence, the ability to find joy in, and richly utilise, the ‘now’; (3) mental freedom, which includes the capacity to choose emotional responses, and to expand the intellect and spirit even when the body is confined; and (4) community, surmounting isolation through empathic relation with others. I suggest a conversation between these groups can bring mutual benefit, and teach us all how to live well in extreme circumstances, which we may encounter some time in our life.
Optimal relief for pain at the end of life: a caregiver’s tale
David B. Morris
The current opioid crisis—driven partly by medical overprescription and partly by illegal drug abuse—is a significant cultural and professional dilemma in the USA and elsewhere. It has produced a strong reaction in favour of restricting medical use of opioids for pain, especially chronic pain. The author for a quarter century has written about pain from a biocultural perspective, and in this essay—based on his experience as primary caregiver for his late wife—he approaches the question of appropriate opioid use at the end of life.
Alison Searle
The relationship between pain as a physical and emotional experience and the concept of suffering as an essential aspect of sanctification for faithful believers was a paradoxical and pressing theological and phenomenological issue for puritan and non-conformist communities in 17th-century England. Pain allows the paradox of non-conformists’ valorisation and suppression of corporeality to be explored due to its simultaneous impact on the mind and body and its tendency to leak across boundaries separating an individual believer from other members of their family or faith community. The material world and the human body were celebrated as theatres for the display of God’s glory through the doctrines of creation and providence despite the fall. Pain as a concept and experience captures this tension as it was represented and communicated in a range of literary genres written by and about puritan and non-conformist women including manuscript letters, spiritual journals, biographies and commonplace books. For such women, targeted by state authorities for transgressing gender norms and the religion established by law, making sense of the pain they experienced was both a personal devotional duty and a political act. Three case studies comprise a microhistory of 17th-century English puritan and non-conformist women’s lived experience, interpretation and representation of pain, inscribed in a series of manuscripts designed to nurture the spiritual and political activism of their communities. This microhistory contributes to a better understanding of pain in early modern England through its excavation of the connections that such writers drew between the imperative to be visibly godly, their marginalised subject position as a proscribed religious minority and their interpretation of the pain they experienced as a result.
At the intersection of self and not-self: finding the locus of ‘self’ in autoimmunity
James D. Katz
Individuals with chronic autoimmune disease experience a sense of vulnerability. In part, this relates to the struggle for finding the meaning of the illness. The consequent existential distress may manifest in an unseated sense of personhood. Insight into the mechanism of this state of powerlessness and of perceived loss of agency is central to establishing a supportive clinician–patient relationship. This present exposition underscores the concept of autoimmunity as one that represents a demarcation in the psyche: one that is not just a threat to our sense of self-hood but also to our humanity. Autoimmunity exposes the challenge imposed on the relating of the self to one’s own self and hence is an ontological challenge. The breach of the boundary between self and not-self that is caused by the autoimmune process culminates in feelings of alienation.
A moment for compassion: emerging rhetorics in end-of-life care
Shahaduz Zaman, Alexander Whitelaw, Naomi Richards, Hamilton Inbadas, David Clark
Compassion is an emotional response to the suffering of others. Once felt, it entails subsequent action to ameliorate their suffering. Recently, ‘compassion’ has become the flagship concept to be fostered in the delivery of end-of-life care, and a rallying call for social action and public health intervention. In this paper, we examine the emerging rhetorics of compassion as they relate to end-of-life care and offer a critique of the expanding discourse around it. We argue that, even where individuals ‘possess’ compassion or are ‘trained’ in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is that countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. We argue that unrealistic assumptions have been made about the role of compassion in end-of-life care and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric.
Extending experimentation: oncology’s fading boundary between research and care
Alberto Cambrosio, Peter Keating, Etienne Vignola-Gagné, Sylvain Besle, Pascale Bourret
Historians and social scientists view the distinction between research and care as diachronically and synchronically contingent, rather than transcendental, as is often the case in bioethics. Comparing how the notion of total care was used in the 1950s with present-day use of that same term by genomically informed oncology programs, the paper argues that the distinction between research and care needs: to be historicized, by examining its repeated emergence and re-definition, and the shifting relations between these two “ideal-typical” components; and to be problematized, by paying attention to the entities, practices, and institutions that are constitutive of the successive regimens that have punctuated oncology’s development. Shifting to contemporary activities, the paper examines how the recent massive injection of molecular biology and high-throughput genomic technologies in the field of oncology has been accompanied by a reshuffling of the research/care distinction, a process that is leading to new forms of “experimental care”.
Philosophy, Psychiatry, & Psychology
Dialectical Virtue and the Philosophy of Psychoanalysis
Richard G. T. Gipps
Philosophical engagements with psychoanalysis have taken several forms. Some have offered a philosophical re-vision of psychoanalytical understandings of human nature. Thus, we have Boss (1963), Binswanger (1963), Sartre (1956), and Merleau-Ponty (1993) offering us existential-phenomenological; Ricoeur (1970) hermeneutic; Lacan (2007) structuralist; and Heaton (2014), Elder (1994), and Fingarette (1965)Wittgensteinian, readings of unconscious life and of therapeutic action. Such philosophical elaborations of the most apt reflective and the most fruitful revisionary understanding of dynamic unconsciousness also involve parallel critique of such aspects of psychoanalytical psychology’s immanent self-understanding as do not conform with the philosophers’ vision of unconscious life. Several of the above authors have, for example, cast doubt on the natural scientific spin or ambition or methods of, in particular, Freudian visions of unconscious meaning and motivation and their investigation, and have suggested alternatives modeled on our understanding of, say, texts or cultures.
Understanding Projective Identification
Louise Braddock
Projective identification is a concept of psychoanalytic psychology that is extensively used within clinical practice and with wide extra-clinical application. It is, however, under-theorized within psychoanalysis, and as a concept acquired through clinical practice it is not easily accessible to other disciplines. Drawing on Kleinian psychoanalysis, I provide a philosophical explanation of projective identification as it occurs in the clinical interaction, in terms of the linking of the imaginations of patient and analyst by the patient’s speech behavior and the analyst’s response. I show how the patient communicates his feeling to the analyst through a speech act and how the receptive act of imagining this provokes in the analyst forms part of her countertransference. Reflection on her countertransference response enables her to understand and interpret the patient’s ‘thick communication’ of his unconscious state of mind.
Projective Identification, Clinical Context, and Philosophical Elucidation
Adam Leite
The clinical concept of projective identification encompasses both unconscious fantasies of putting aspects of oneself into another person, as well as interpersonal processes aimed at evoking a corresponding response in another person (“actualizing” the projection), all for purposes of defensive evacuation, control and/or communication.1 In thinking about this complex situation, we need to consider its interpersonal dimensions as well as the intrapsychic processes that take place in each party. Louise Braddock’s paper is thought provoking, far-reaching, and important in its use of concepts from analytic philosophy to attempt to bring clarity on both fronts. Her account makes use of two crucial philosophical notions in particular: central imagining (intrapsychic), and speech acts and their uptake (interpersonal). Both can be helpful in understanding certain aspects of projective identification. Still, I doubt whether, in the end, either notion can do precisely the work that it is being asked to do.
Michael Lacewing
Can psychoanalytic theory be scientific? Psychoanalysis has a distinct method that has generated a distinct body of evidence, the clinical data. To qualify as a scientific psychology, these data must be able to evidentially support theoretical claims. I discuss three key objections to the methods of psychoanalysis, ‘suggestion’ (which potentially biases the data), whether the data can be used to provide genuine tests of theoretical hypotheses, and whether we can reliably infer motives from the behavior noted in the clinical data. I conclude that parts of psychoanalytic theory, namely, the psychodynamic model of the mind, can be defended on the basis of the clinical data, but other parts cannot.
Psychoanalysis:Science of the Mind?
Richard G. T. Gipps
In his paper on ‘The Science of Psychoanalysis,’ Lacewing helpfully distinguishes a central psychodynamic model of the mind, elaborated in the clinical theory of psychoanalysis, from certain of its metapsychological and etiological theories. Critics who view psychoanalysis as unscientific have tended to focus on the lack of evidential support for certain of its developmental claims or the lack of reliability and validity in its theoretical posits. Lacewing claims, however, that the model contained in the clinical theory is much more scientifically respectable than its critics have made out. The data may not always be in, but Lacewing’s argument is that there is nothing pseudoscientific about the central model that precludes it in principle from receiving meaningful and objective confirmation or disconfirmation.
Madness, Badness and Immaturity: Some Conceptual Issues in Psychoanalysis and Psychotherapy
Edward Harcourt
Contrasting pairs of terms, for example, ‘mergedness’ and ‘separateness,’ play an organizing role in many versions of psychoanalysis and psychoanalytic psychotherapy. These pairs are meant to define two contrasts: between maturity and immaturity, and between psychic health and psychopathology. It is argued that this is too much weight for any terminology to bear. However, it follows not that we should abandon the terminology, but seek a proper understanding of what it means. It is argued that the contrast these terminologies primarily define is an ethical one, and the ideals of human relatedness they embody is compared to similar ideals in Aristotle, Iris Murdoch, and Kant. Along the way the paper attacks the claim that certain kinds of psychopathology are common to normal infants and ill adults.
Moral Experience and the Unconscious
Steven Groarke
In a fascinating paper, where the stakes are a good deal higher than the modesty of its tone might suggest, Edward Harcourt requires us to think again about the ethics of psychoanalysis. We should not allow ourselves to be misled by Harcourt’s tendency to downplay the ambitious reach of his argument. Indeed, Lacan demonstrated what is at stake here by drawing attention to the “originality of the Freudian position in ethical matters” (1986/1992, p. 11). Lacan may be relied on, more obviously than anyone else I can think of in the Freudian field, as a counterweight to the assimilation of psychoanalysis to moral philosophy. A stenographer began to transcribe Lacan’s seminars starting in 1952 and, reflecting on matters some 20 years later, Lacan claimed that “of all the seminars that someone else is going to bring out, [L’éthique de la psychanalyse (1959–1960)] is perhaps the only one I will rewrite myself and make into a written text” (1975/1998, p. 53). Clearly, Lacan considered the seminar important enough to warrant special attention and, in my view, it is one of the most significant psychoanalytical and philosophical works on ethics in the Freudian tradition, a counterpart, as Certeau (1986, p. 60) points out, to Freud’s masterwork on religious history in Moses and Monotheism.
Searching for a Sign:Listening, Looking, Touching, Way-Finding
William Buse
In this multidisciplinary essay, the psychotherapeutic process is reframed as “way-finding,” a multivalent concept that resonates through material, psychological, and sacred dimensions of human life as reflected by our relationship with signs. The work of social theorist Georges Bataille, as well as the perspectives of anthropology, semiotics, philosophy, art history, and theology, are invoked along the way as guides toward an alternate understanding of the sacred and its relevance for the clinical encounter. This collage of theoretical perspectives is integrated through an in-depth embellished case presentation featuring the treatment of a professional sign-maker.
Helena Machado, Rafaela Granja
Under EU Law, Member States are compelled to engage in reciprocal automated forensic DNA profile exchange for stepping up on cross-border cooperation, particularly in combating terrorism and cross-border crime. The ethical implications of this transnational DNA data exchange are paramount. Exploring what the concept of ethics means to forensic practitioners actively involved in transnational DNA data exchange allows discussing how ethics can be addressed as embedded in the sociality of science and in the way scientific work is legitimated. The narratives of forensic practitioners juxtapose the construction of fluid ethical boundary work between science and non-science with the dynamic management of controversies, both of which are seen as ways to lend legitimacy and objectivity to scientific work.
Ethical boundary work involves diverse fluid forms: as a boundary between science/ethics, science/criminal justice system, and good and bad science. The management of controversies occurs in three interrelated ways. First, through a continuous process of reconstructing delegations of responsibility in dealing with uncertainty surrounding the reliability of DNA evidence. Second, threats to the protection of data are portrayed as being resolved by black-boxing privacy. Finally, controversies related to social accountability and transparency are negotiated through the lens of opening science to the public.
Virtuous Play: The Ethics, Pleasures, and Burdens of Brain Training
Matthew Wade
Through normative appeals of cognitive enhancement, the brain has become a site of both promise and peril. Displaying oneself as ethically sound may now include showing requisite care for cognitive capacities. Moreover, enhancing our cognitive reserves is framed as aspirational means of averting neurodegenerative disease and neoliberal precarity. Such demanding labours of self-care warrant close scrutiny. Promissory discourses proclaim our ‘neuroplasticity’, encouraging subjects to work on endlessly improvable functional capacities that hold labour market value. Yet a ‘fun morality’ is equally prevalent in today’s experiential economies. Neuro-enhancement is thus sold not as an ascetic chore, but an ecstatic potential. Hope, fear, pleasure, and ethical conduct are, therefore, all closely entwined in the ‘virtuous play’ of ‘brain training’, where commercial entities use digital platforms for game-based tasks designed to enhance cognitive abilities. These services are typically promoted through appeals to our dutiful biocitizenship. This type of virtuous play is increasingly the means by which subjects produce themselves as simultaneously pleasure-seeking, productive, and resoundingly ‘well’. However, this understanding of virtuosity is often narrowly derived—reduced to ‘active ageing’, corporate-style ‘neurohacking’, and ‘brain profiles’—that threaten to foreclose other ways of imagining well-being. In failing to recognize the neoliberal underpinnings of virtuous play we entrench burdensome attachments to emerging modes of personal enhancement. Against these seductive appeals of combining pleasure with self-improvement, we must cultivate a critical reflexivity regarding exactly how ‘enhancement’ is conceived, opening room for lines of possibility outside of currently dominant frameworks.
Institutionalised otherness: Patients’ references to psychiatric diagnostic categories
Elina Weiste, Anssi Peräkylä, Taina Valkeapää, Enikö Savander, Jukka Hintikka
Diagnosis is integral part of the way medicine organises illness: it is important for identifying treatment options, predicting outcomes and providing an explanatory framework for clinicians. Previous research has shown that during a medical visit not only the clinician but also patients provide explanations for the causes of their symptoms and health problems. Patients’ lifeworld explanations are often differentiated from the diagnostic explanations provided by clinicians. However, while previous conversation analytic research has elaborated the ways in which diagnostic and lifeworld explanations are interactionally structured in somatic medicine, there is little research on how these explanations are organised in psychiatry.
Psychiatric diagnosis is particularly interesting because in mental disorders illness itself is not determined by any objective measurement. Understanding of the patient’s problem is constructed in interaction between the patient and clinician. The focus of this research will be patients’ references to diagnosis in psychiatry and the functions of these references.
The findings are based on conversation analysis of 29 audio-recorded diagnostic interviews in a psychiatric outpatient clinic. Our results demonstrate that patients can utilise diagnostic categories in several ways: disavowing a category to distance their symptoms from it, accounting for their life experiences being rooted in psychiatric illnesses and explaining their illnesses as being caused by certain life experiences. We argue that these explanations are important in patients’ face-work – in constructing and maintaining a coherent and meaningful view of the patient’s self.
Louise Laverty, Rebecca Harris
Conditional policies, which emphasise personal responsibility, are becoming increasingly common in healthcare. Although used widely internationally, they are relatively new within the UK health system where there have been concerns about whether they can be justified. New NHS dental contracts include the introduction of a conditional component that restricts certain patients from accessing a full range of treatment until they have complied with preventative action. A policy analysis of published documents on the NHS dental contract reforms from 2009 to 2016 was conducted to consider how conditionality is justified and whether its execution is likely to cause distributional effects. Contractualist, paternalistic and mutualist arguments that reflect notions of responsibility and obligation are used as justification within policy. Underlying these arguments is an emphasis on preserving the finite resources of a strained NHS. We argue that the proposed conditional component may differentially affect disadvantaged patients, who do not necessarily have access to the resources needed to meet the behavioural requirements. As such, the conditional component of the NHS dental contract reform has the potential to exacerbate oral health inequalities. Conditional health policies may challenge core NHS principles and, as is the case with any conditional policy, should be carefully considered to ensure they do not exacerbate health inequities.
Kushan Dasgupta
This study examines challenges involved in recruiting bone marrow donors. Data comes from participant observation with a recruitment organization in the United States. Findings reveal that recruiters try to express bone marrow donation with common “gift of life” messaging, which emphasizes a singular event involving generosity. Potential recruits, however, respond by focusing on pain and time commitments. These concerns draw attention to the many stages and requirements involved in bone marrow donation and make issues of compliance salient. The juxtaposition of generosity and compliance creates practical difficulties for recruiters. The study contributes to existing literature, by illustrating how logistics shape altruism and gift arrangements involved in medical donation.
New Zealand children’s health stamps: Ideological artefacts linking health and place
Robin A.Kearns, Tara M.Coleman, Jonathan Edmeades
This paper addresses a hitherto unexamined phenomenon in the geography of health promotion: the use of postage stamps. We ‘read’ health stamps as featuring imagery and exhortations that reflect temporally-specific understandings of children’s health and wellbeing. As a case study, we examine examples of the stamps sold annually since 1929 as a fund-raiser for New Zealand Children’s Health Camps Foundation. This government-supported voluntary sector agency sought to offer respite for children from unhealthy environments and enhance their wellbeing through offering opportunities in semi-rural locations focusing on nutrition and exercise. Recently, emphasis changed to concern with behavioural issues such as self-esteem. The annual stamp appeal continued until 2016 with nuanced themes (e.g., birds and butterflies, invoking associated ideas of children as vulnerable yet precious and needing protection). Our goal is two-fold: first, we seek to theorise the role of the postage stamp in mobilising health-promoting messages; and, second, we examine changing imaginaries associated with child health included in this annual series of stamps. Drawing on assemblage theory, we read the act of purchasing children’s health stamps as offering a tacit seal of approval for child health. Through assembling resources, personnel and ideas about health, they reflected and reproduced the nation state and its goals for children’s health while also crossing national boundaries.
Embodied disruption: “Sorting out” gender and nonconformity in the doctor’s office
Emily Allen Paine
Among LGBTQ people, those who are gender nonconforming (GNC) may be at heightened risk of both discrimination and underutilization of healthcare—yet little is known about what happens during healthcare encounters to compel GNC individuals to continue or avoid seeking future care. This study qualitatively examines the healthcare experiences of a racially diverse sample of 34 adult LGBTQ cis women, transgender men, and nonbinary individuals in a metropolitan area of the United States who do not conform to dominant biomedical schemas of sex and gender. GNC individuals experience embodied disruption in medical settings when patients are mis/recognized; providers respond to disruption in ways that further distress patients. Broadly, participants report similar experiences across racial and gender identities, but patients manage disruption somewhat differently depending on their embodied positions to gender norms. This study contributes to literature of stress, stigma, and sex, gender, and sexuality within medicine by illuminating how stigmatizing healthcare interactions deter LGBTQ individuals from seeking healthcare. Findings point to the importance of considering both structural factors and embodied visibility in future research addressing how stigma and discrimination manifest within health settings to disadvantage LGBTQ groups.
Chemical warfare in Colombia, evidentiary ecologies and senti-actuando practices of justice
Kristina Lyons
Between 1994 and 2015, militarized aerial fumigation was a central component of US-Colombia antidrug policy. Crop duster planes sprayed a concentrated formula of Monsanto’s herbicide, glyphosate, over illicit crops, and also forests, soils, pastures, livestock, watersheds, subsistence food and human bodies. Given that a national peace agreement was signed in 2016 between FARC-EP guerrillas and the state to end Colombia’s over five decades of war, certain government officials are quick to proclaim aerial fumigation of glyphosate an issue of the past. Rural communities, however, file quejas (complaints or grievances) seeking compensation from the state for the ongoing effects of the destruction of their licit agro-forestry. At the interfaces of feminist science and technology studies and anthropology, this article examines how evidentiary claims are mobilized when war deeply politicizes and moralizes technoscientific knowledge production. By ethnographically tracking the grievances filed by small farmers, I reveal the extent to which evidence circulating in zones of war – tree seedlings, subsistence crops, GPS coordinates and bureaucratic documents – retains (or not) the imprints of violence and toxicity. Given the systematic rejection of compensation claims, farmers engage in everyday material practices that attempt to transform chemically degraded ecologies. These everyday actualizations of justice exist both alongside and outside contestation over the geopolitically backed violence of state law. Rather than simply contrasting everyday acts of justice with denunciatory claims made against the state, farmers’ reparative practices produce an evidentiary ecology that holds the state accountable while also ‘senti-actuando’ (feel-acting) alternative forms of justice.
Sensory politics: The tug-of-war between potability and palatability in municipal water production
Christy Spackman, Gary M Burlingame
Sensory information signaled the acceptability of water for consumption for lay and professional people into the early twentieth century. Yet as the twentieth century progressed, professional efforts to standardize water-testing methods have increasingly excluded aesthetic information, preferring to rely on the objectivity of analytic information. Despite some highly publicized exceptions, consumer complaints remain peripheral to the making and regulating of drinking water. This exclusion is often attributed to the unreliability of the human senses in detecting danger. However, technical discussions among water professionals during the twentieth century suggest that this exclusion is actually due to sensory politics, the institutional and regulatory practices of inclusion or exclusion of sensory knowledge from systems of action. Water workers developed and turned to standardized analytical methods for detecting chemical and microbiological contaminants, and more recently sensory contaminants, a process that attempted to mitigate the unevenness of human sensing. In so doing, they created regimes of perception that categorized consumer sensory knowledge as aesthetic. By siloing consumers’ sensory knowledge about water quality into the realm of the aesthetic instead of accommodating it in the analytic, the regimes of perception implemented during the twentieth century to preserve health have marginalized subjective experiences. Discounting the human experience with municipal water as irrelevant to its quality, control and regulation is out of touch with its intended use as an ingestible, and calls for new practices that engage consumers as valuable participants.
Sex, drugs, and rhetoric: The case of flibanserin for ‘female sexual dysfunction’
Judy Z Segal
In August, 2015, the US Food and Drug Administration approved Addyi (flibanserin) for the treatment of Hypoactive Sexual Desire Disorder in premenopausal women. Ten months before that, the FDA had held a Patient-Focused Drug Development Public Meeting to address the ‘unmet need’ for a pharmaceutical to treat that condition. I attended that meeting as a rhetorical observer. This essay is an account of persuasive strategies used on, and then by, the FDA, as it considered approving a drug that was not convincingly either safe or effective. The essay turns on three texts: the ‘Even the Score’ pro-drug campaign that informed the patient-focused meeting, the text of the meeting itself, and the FDA’s own published report of the event. I describe how a pharmaceutical company (Sprout, then owners of flibanserin) recruited, and then ventriloquized, both health professionals and members of the public to pressure the FDA to approve a sex drug for women – claiming that not to do so was evidence of sexism. I argue, with rhetorical evidence, that the case for approving flibanserin had already been won before Sprout submitted its application.
Sociology of Health and Illness
Sarah MacDonald, Simon Murphy, Eva Elliott
Potential merits of a social practice perspective for examining the meanings and dynamics of family food include moving beyond individual behaviour, and exploring how practices emerge, develop and change. However, researchers have struggled to encourage reflection on mundane practices, and how to understand associated meanings. Drawing on a study of families in South Wales, this article reflects on the value of the diary‐interview approach in addressing these methodological challenges, and aims to explore and understand the dynamics of control across family contexts. Contemporary practice theories distinguish between practices as ‘performances’ and practices as ‘entities’ and the diary‐interview method facilitated an examination of these dimensions. Detailed accounts of daily ‘performances’ (through diaries), alongside reflection on underlying contexts and ‘entities’ (through interviews), illustrated the entanglement of control, practices and context. The article adds further complexity to the concept of practice ‘bundles’ which facilitated an understanding of how food was interrelated with other practices – across family contexts and across generations. Sociological approaches with a practices perspective at the core, offer potential for developing public health interventions by acknowledging: the relational meaning of food; the embeddedness of food within everyday practices; and the need to consider interventions across a range of policy areas.
Ellen Margrete Iveland Ersfjord
Childhood obesity is increasing in many parts of the world. For the child, obesity often involves major social challenges. Within the framework of social studies of children and childhood and employing the concept of biopedagogies, I explore how children with severe obesity who participate in a long‐term rehabilitation programme changed the perception of their bodies from ‘being fat’ to ‘suffering from obesity’ by embracing the biopedagogies involved. Due to this transformation, ‘obesity’ was made into an entity – ‘a thing’ that the children could work on –, which was used for coping and change. The article is based on an ethnographic field study of a Norwegian randomized medical intervention trial for children with obesity.
Co‐production in community mental health services: blurred boundaries or a game of pretend?
Sine Kirkegaard, Ditte Andersen
The concept of co‐production suggests a collaborative production of public welfare services, across boundaries of participant categories, for example professionals, service users, peer‐workers and volunteers. While co‐production has been embraced in most European countries, the way in which it is translated into everyday practice remains understudied. Drawing on ethnographic data from Danish community mental health services, we attempt to fill this gap by critically investigating how participants interact in an organisational set‐up with blurred boundaries between participant categories. In particular, we clarify under what circumstances the blurred boundaries emerge as believable. Theoretically, we combine Lamont and Molnár’s (2002) distinction between symbolic boundaries and social boundaries with Goffman’s (1974) microanalysis of “principles of convincingness”. The article presents three findings: (1) co‐production is employed as a symbolic resource for blurring social boundaries; (2) the believability of blurred boundaries is worked up through participants’ access to resources of validation, knowledge and authority; and (3) incongruence between symbolic and social boundaries institutionalises practices where participants merely act ‘as if’ boundaries are blurred. Clarification of the principles of convincingness contributes to a general discussion of how co‐production frames the everyday negotiation of symbolic and social boundaries in public welfare services.
Andrew Smart, Kate Weiner
This article examines the articulation and enactment of racialised classifications in clinical practice guidelines and in accounts of clinical practice. It contributes to debates about racialisation in medicine and its consequences. The research centred on the case study of prescribing guidelines for hypertension in England and Wales, drawing on documentary sources and semi‐structured expert interviews. We found that conceptual and socio‐political uncertainties existed about how to interpret the designation ‘Black patients’ and about the practices for identifying patients’ race/ethnicity. To ‘close’ uncertainties, and thus produce the guidelines and treat patients, respondents drew authority from disparate elements of the ‘topologies of race’. This has implications for understanding processes of racialisation and for the future use of racialised clinical practice guidelines. We argue that clinical practice guidelines play a ‘nodal’ role in racialisation by forming an authoritative material connection that creates a path for translating racialised research into racialised healthcare practice, and that they carry with them implicit conceptual and socio‐political uncertainties that are liable to create inconsistencies in healthcare practice.
Conceptualising women’s motivations for social egg freezing and experience of reproductive delay
Kylie Baldwin
As the average age of motherhood in many Western countries continues to rise, the spectacle of the older mother and the trend towards delayed childbearing has been the subject of much public debate and interest. Concurrent to this trend has been the development and use of a new form of fertility preservation – social egg freezing – a technology which by its very nature is meant to enable reproductive delay. Whilst previous studies have been able to provide insights into the complex and often interrelating structural, economic, and relational factors shaping the timing of motherhood, and in some cases women’s use of social egg freezing, fewer studies have clearly demonstrated the way these factors themselves, as well as the accounts of individual women, can be seen as being shaped by ideological and discursive forces. Drawing on interviews with 31 users of social egg freezing this article will demonstrate how women’s accounts of reproductive delay and use of egg freezing technology can be seen as being shaped by neoliberal rationality, heteronormativity, discourses of ‘appropriate parenting’ and gendered ideologies of parenthood.
Dualities of dementia illness narratives and their role in a narrative economy
Alexandra Hillman, Ian Rees Jones, Catherine Quinn, Sharon M. Nelis, Linda Clare
The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.
Narratives and gatekeeping: making sense of triage nurses’ practice
Lars E.F. Johannessen
It is well documented that emergency service staff consider some patients to be ‘inappropriate attenders’. A central example is ‘trivia’, denoting patients with medical problems considered too ‘trivial’ to warrant attention. Although research has repeatedly shown that frontline staff violate guidelines in turning away ‘trivial’ patients, existing research has paid insufficient attention to why staff are willing to engage in guideline‐violating gatekeeping, which may put both themselves and ‘trivial’ patients at risk. To address this issue, the present article explores nurses’ narratives about ‘trivial’ patients – referred to in this context as ‘GP patients’ – drawing on fieldwork data from a Norwegian emergency service. The article reconstructs three narrative clusters, showing that nurses’ gatekeeping is motivated by concerns for the patient being turned away, for nurses and more critically ill patients, and for the service they work for. Some of the issues embedded in these narratives have been under‐analysed in previous research – most importantly, the role of identity and emotion in nurses’ gatekeeping, and how patient narratives can function as ‘social prognoses’ in nurses’ assessments. Analysis of these narratives also reveals an antagonistic relationship between nurses and ‘trivial’ patients that contradicts nurses’ ethical guidelines and indicates a need for healthcare reform.
Tobias Haeusermann
This article reports an ethnographic study of the handover routines in Germany’s first dementia village, with a central focus on how care is balanced between domestic intimacy and institutional detachment. The term ‘professionalised intimacy’ is used for the vivid interplay between comfort and intimacy that renders the interaction between care workers and residents far more complex than previous theories have articulated. Because of the intimacy involved in community building, however, the promise of personalised care must clash with the bureaucratic structures of an official institution, potentially depriving the care workers of their public, respected identity in the process. The study further suggests that most care workers, in fact, support this division between domestic intimacy and institutional detachment. Even if they subscribe to a dementia village’s philosophy of personalised care, their medical training and enculturation has endowed them with a habitus compatible with the modern health profession, with incentives on achieving quantifiable health goals. The dementia village is thus illustrated as a pioneering health care experiment that negotiates rivalling discourses of intimacy, professionalisation, and medicalisation.
Yi-Feng Carol Lan, Diane C. Zelman, Wen-Tao Chao
Bipolar disorder (BD) affects a significant proportion of Taiwanese individuals (Weissman et al., 1996; Yang, Yeh, & Hwu, 2012). Psychotropic medications are typically the mainstay of treatment for BD, and there is an abundance of international research on biological etiology and medication options. However, there is comparatively little research on psychosocial aspects of BD, including how it is understood and managed within families. As culture provides the context in which psychiatric disease is managed, there is a need to identify distinct Chinese psychosocial perspectives that might shed light on intervention options. This research explored how Taiwanese patients and family members comprehend and cope with BD. A sample of 42 participants, including 20 Taiwanese patients diagnosed with Bipolar Disorder-I (BD-I) for at least 4 years, and 22 family members, participated in separate interviews on explanatory models of illness. Qualitative thematic analysis focused on features that were distinct from those in current Western research literature. Five themes were identified that represented Taiwanese conceptualizations of BD, notions of etiology, views regarding treatment, and the difficulties in managing the disorder. Participants used Chinese language terms and descriptions of BD that reflected greater concerns about irritability, anger, and family conflict than about other symptoms, and participants also emphasized characterological trait descriptions of the condition. Their responses reflected their acceptance of lifelong family responsibility for caretaking, clashing beliefs regarding biomedical versus traditional Chinese medical and spiritual models of etiology and cure, profound concerns about the effects of psychiatric medication on the liver and kidney systems, and a focus on stress rather than genetic or biological models of etiology.
Laelia Benoit, Aurélie Harf, Laura Sarmiento, et al.
American literature on international adoption suggests that adoptees’ pride in the culture of their birth country improves their self-esteem and helps them to cope with experiences of racism. Parents are therefore encouraged to teach their adopted children multicultural skills to improve their psychological well-being. French psychologists, on the contrary, suggest that adoptees should feel fully members of their adoptive country and families. These practices shed light on the respective multicultural and universalist paradigms in the US and France. Few papers, however, consider the opinions of adoptees. This study explores internationally adopted children raised in France and their spontaneous curiosity about their birth country. The present study used semi-structured interviews with 19 adoptees aged 8–18 years old, to explore their attitudes towards the culture of their birth country. Transcripts of recorded interviews were analyzed according to interpretative phenomenological analysis. While there was striking consistency of interest in birth countries, adoptees’ expression of curiosity varied across time. Children described distinctive goals: knowing more about their history, finding relatives, becoming a multicultural citizen, or simply helping people. Their parents’ involvement was thus seen as helpful, but adoptees stress the need to feel ready and may prefer independent ways of learning about their birth country. Adoptees’ multiple feelings of belonging derive not only from multicultural training but from a lifelong construction of self. Professionals and parents may need to adapt to adoptees’ individual development, distinctive time frames, and ways of learning to provide better support to them.
