We have three special issues to conclude our highlighting of new articles in June! Here they are:
- Surveillance and Embodiment: Dispositifs of Capture, in Body & Society
- Perspectives on patienthood, practitioners and pedagogy, in Medical Humanities
- Childbirth and Reproduction, in Sociology of Health & Illness
And, if you’re looking for more to read, the first part of this month’s roundup is here.
Surveillance and Embodiment: Dispositifs of Capture
Martin French, Gavin JD Smith
This article provides an introduction to a special issue of Body & Society that explores the surveillance-embodiment nexus. It accentuates both the prevalence and consequence of bodies being increasingly converted into ‘objects of information’ by surveillance technologies and systems. We begin by regarding the normalcy of body monitoring in contemporary life, illustrating how a plurality of biometric scanners operate to intermediate the physical surfaces and subjective depths of bodies in accordance with various concerns. We focus on everyday experiences of bodily intermediation by surveillant dispositifs, and consider the broader political, epistemological, and ontological significance of these processes. We then point to the substantive intersections and divergences existing between body and surveillance studies. We conclude with an overview of the five articles appearing in this special issue. We describe how each contribution creates a template for imagining what a body is, and what a body might become, in a culture defined by proliferating data sharing behaviours, systems of codification, and practices of intermediation.
In this article I consider how our experiences of bodily privacy are changing in the contemporary surveillance society. I use biometric technologies as a lens for tracking the changing relationships between the body and privacy. Adopting a broader genealogical perspective, I retrace the role of the body in the constitution of the modern liberal political subject. I consider two different understandings of the subject, the Foucauldian political subject, and the Lacanian psychoanalytic subject. The psychoanalytic perspective serves to appraise the importance of hiding for the subject effects of excessive exposure to the Other’s gaze. I conclude to the importance of the subject’s being able to hide, even when it has nothing to hide. By considering these two facets of subjectivity, political and psychic, I hope to make sense of our enduring and deeply political passionate attachment to privacy.
Big Data Surveillance and the Body-subject
Kirstie Ball, MariaLaura Di Domenico, Daniel Nunan
This paper considers the implications of big data practices for theories about the surveilled subject who, analysed from afar, is still gazed upon, although not directly watched as with previous surveillance systems. We propose this surveilled subject be viewed through a lens of proximity rather than interactivity, to highlight the normative issues arising within digitally mediated relationships. We interpret the ontological proximity between subjects, data flows and big data surveillance through Merleau-Ponty’s ideas combined with Levinas’ approach to ethical proximity and Coeckelberg’s work on proximity in the digital age. This leads us to highlight how competing normativities, and normative dilemmas in these proximal spaces, manipulate the surveilled subject’s embodied practices to lead the embodied individual towards experiencing them in a local sense. We explore when and how the subject notices these big data practices and then interprets them through translating their experiences into courses of action, inaction or acquiescence.
HIV, Viral Suppression and New Technologies of Surveillance and Control
Adrian Guta, Stuart J Murray, Marilou Gagnon
The global response to managing the spread of HIV has recently undergone a significant shift with the advent of ‘treatment as prevention’, a strategy which presumes that scaling-up testing and treatment for people living with HIV will produce a broader preventative benefit. Treatment as prevention includes an array of diagnostic, technological and policy developments that are creating new understandings of how HIV circulates in bodies and spaces. Drawing on the work of Michel Foucault, we contextualize these developments by linking them to systems of governance and discursive subjectivation. The goal of this article is to problematize the growing importance of viral suppression in the management of HIV and the use of related surveillance technologies. For people living with HIV, we demonstrate how treatment-as-prevention’s emphasis on individual and collective viral load is transforming the performative dimensions of embodied risk, affect, subjectivity and sex.
Today’s bodies are akin to ‘walking sensor platforms’. Bodies either host, or are the subjects of, an array of sensing devices that act to convert bodily movements, actions and dynamics into circulative data. This article proposes the notions of ‘disembodied exhaust’ and ‘embodied exhaustion’ to conceptualise processes of bodily sensorisation and datafication. As the material body interfaces with networked sensor technologies and sensing infrastructures, it emits disembodied exhaust: gaseous flows of personal information that establish a representational data-proxy. It is this networked actant that progressively structures how embodied subjects experience their daily lives. The significance of this symbiont medium in determining the outcome of interplays between networked individuals and audiences necessitates that it is carefully contrived. The article explores the nature and function of the data-proxy, and its impact on social relations. Drawing on examples that depict individuals engaging with their data-proxies, the article suggests that managing a virtual presence is analogous to a work relation, demanding diligence and investment. But it also shows how the data-proxy operates as a mode of affect that challenges conventional distinctions made between organic and inorganic bodies, agency and actancy, mortality and immortality, presence and absence.
Reading the Human Brain: How the Mind Became Legible
The human body was made legible long ago. But what of the human mind? Is it possible to ‘read’ the mind, for one human being to know what another is thinking or feeling, their beliefs and intentions. And if I can read your mind, how about others – could our authorities, in the criminal justice system or the security services? Some developments in contemporary neuroscience suggest the answer to this question is ‘yes’. While philosophers continue to debate the mind-brain problem, a range of novel technologies of brain imaging have been used to argue that specific mental states, and even specific thoughts, can be identified by characteristic patterns of brain activation; this has led some to propose their use in practices ranging from lie detection and security screening to the assessment of brain activity in persons in persistent vegetative states. This article reviews the history of these developments, sketches their scientific and technical bases, considers some of the epistemological and ontological mutations involved, explores the ecological niches where they have found a hospitable environment, and considers some implications of this materialization of the readable, knowable, transparent mind.
Editorial: Perspectives on patienthood, practitioners and pedagogy
Ciara Breathnach, Brendan D Kelly
This issue brings together scholars of philosophy, medicine, history, art history and psychiatry to consider the theme of ‘patienthood’, to ponder what being a patient means in historic and modern terms, to discuss the practitioner/patient relationship, to contribute to pedagogy and ongoing debates in the medical humanities. By focusing on two main themes, narratives and pedagogy, this issue builds on the advances and responds to the ‘clarion calls’ of the previous special edition, which asked what critical medical humanities might represent.
Patienthood in medieval Tuscany: beliefs and cures
This paper focuses on intersections of holy and sick bodies in the Tuscan Middle Ages to examine how the faithful accessed miraculous cures from contact with, or belief in, the relics of the saints. Rather than examine the relationship between the long dead martyrs (whose relics were abundant), however, it will look at the relationship between relatively recent saints and their devotees. The miracles discussed are traditional—that is, they are found in the lives of many saints and are not exceptional. It is hoped, however, that by concentrating on Tuscany, some insights can be secured on the relationship between Tuscan individuals of the late middle ages and those of their community who were recognised, either officially or through vox populi, as saints.
Ireland’s only published witchcraft pamphlet, written by Daniel Higgs, The Wonderful and True Relation of the Bewitching of a Young Girle in Ireland, What Ways she was Tormented, and a Receipt of the Ointment that she was Cured with (1699), works within the confines of late seventeenth-century demonology, while upholding the patriarchy of the fledgling Protestant Ascendancy. More importantly, it provides rare insight into early modern Protestant witchcraft beliefs, highlights the limits of contemporary medical care and provision and details the pathways of self-medication people resorted to. Higgs’ method of promoting self-medication as a cure to bewitchment and demonic possession was based on a remedy described in an obscure Renaissance magical text. To promote his ‘cure’ the pamphlet included a particularly vitriolic critique of the established Irish medical profession, as self-regarding and incompetent witchcraft deniers. This article uses Higgs’ pamphlet to explore the limits to/of medical knowledge in early modern Ireland and Europe.
Searching for the patient’s voice in the Irish asylums
Brendan D Kelly
The history of mental healthcare in Ireland ends to focus on the histories of institutions and development of mental health legislation. Attention has also been devoted to clinical records, with all of their interpretative and narrative complexities. In both the historiography and archives, however, patients themselves remain remarkably elusive, their voices astonishingly distant. In countries other than Ireland, there have been more extensive analyses of patients’ letters, journals and first-person accounts of hospitalisation and treatment. In Ireland, there is real difficulty accessing such accounts, if they exist, especially from the 1800s. Asylum and hospital records offer some assistance in understanding patients’ concerns and, arguably, the symptoms recorded in asylum records (eg, delusions) provide further windows into patients’ minds. Methodological challenges abound, but while patients’ voices may remain largely unknown at present, they are certainly not unknowable. This paper posits that we just need to listen harder and, perhaps, listen better.
Unwieldy by nature, unsolicited diaries and their study, this article contends, have the potential to offer deeper insights into the experience of illness but only if they receive due consideration from scholars. This article uses a series of historic diaries to examine the concept of ‘professional patienthood’ or being a full-time patient, and, while it found the narrative medicine approach to be very useful, it also found it limiting. The recent methodological trends in biomedicine and social sciences towards structured mechanisms like questionnaires—surveying and evaluating performance, satisfaction and experience—can only go so far. This article makes a case for the unsolicited, the unorthodox and the unstructured.
There is, I think, a resonance between being a patient and having a greater sense of wonder at things in the world around us: a sense of wonder at things that become, briefly and intermittently, intensely and newly present. As with experiences of art, or of humour, or of love, or of strong ethical motivation, in experiences of wonder it seems to me that we live more intensely. And if it is a good thing to live, then perhaps living intensely may, while it lasts, be an intensely good thing. In this paper, I will try to reflect on this resonance within my personal experience, within the context of a number of related undertakings. These are as follows:
- to argue that there is something enduringly and inescapably wonderful about the challenge facing the clinical medical practitioner;
- to disclose something personal about myself as a patient within primary care;
- to recognise the wonder of our embodied state;
- to review the importance of a sense of wonder for doctor and patient alike;
- to argue for a reassessment—and a reassignment—of the moral centre of gravity of clinical medicine;
- to consider whether an ethics grounded upon wonder is compatible with virtue ethics
- to explore aspects of wonder and suggest future research;
- to sketch out how a sense of wonder at our mortality—our ‘finitude’—helps us all in acknowledging and responding to ‘the lives of others’.
These undertakings cumulatively constitute the ‘invitation to wonder’ that I would like to issue.
In defence of utility: the medical humanities and medical education (open access)
The idea that a study of the humanities helps to humanise doctors has become a leitmotif within the field. It is argued that the humanities (especially, literature) help to foster insights beyond those provided by biomedical training. Healthy young medics, it is claimed, can thereby gain significant insights into patienthood, and obtain important skills that may be valuable for their professional life. But the instrumentality of the humanities is not the only justification proffered for its inclusion in medical curricula. In this paper I critically examine the two overarching justifications recurrently cited in the mainstream literature—namely, (1) the instrumental worth and (2) the intrinsic value of the medical humanities in educating doctors. Examining these theses (and focusing on the views of a leading medical humanities scholar) I show that the bifurcation into instrumental versus non-instrumental justifications is not supported by the argumentation. Instead, I find that the particulars of the supposedly intrinsic justifications amount to an unambiguously instrumental defence of the humanities. Contextualizing the present investigation to probe further, I describe a long history of debate about the role of the humanities in British education and find that it rests on unsupported dichotomies (utility vs non-utility, theoretical vs applied, educated vs trained). I conclude that the medical humanities’ manifesto would be more intellectually honest and coherent, and provide a more robust defence of its value in medical education, if it chose to embrace a wholly instrumental rationale for its role.
Rethinking the medical in the medical humanities
Desmond O’Neill, Elinor Jenkins, Rebecca Mawhinney, Ellen Cosgrave, Sarah O’Mahony, Clare Guest, Hilary Moss
To clinicians there are a number of striking features of the ever-evolving field of the medical humanities. The first is a perception of a predominantly unidirectional relationship between medicine and the humanities, generally in terms of what the arts and humanities have to offer medicine. The second is the portrayal of medical practice in terms of problems and negativities for which the medical humanities are seen to pose the solution rather than viewing medicine as an active and positive contributor to an interdisciplinary project. Paradigms that fail to recognise the contributions of medicine and its practitioners (including students) to the medical humanities, this paper argues, will continue to struggle with definition and acceptance. This paper explores the possibilities for advancing the medical humanities through recognition of the contribution of medicine to the humanities and the importance of engaging with the arts, culture and leisure pursuits of doctors and medical students. Our research shows the richness of cultural engagement of medical students, their broad range of cultural interests and their ability to contribute to research and scholarship in the medical humanities. Mutual recognition of strengths, weaknesses and differences of scholarly approach is critical to successful development of the enterprise. Recognising and building on the interests, sympathies and contributions of medicine and its practitioners to the medical humanities is a fundamental component of this task. Future directions might include introductory courses for humanities scholars in aspects of healthcare and medicine.
Medical humanities: a closer look at learning
A Patterson, D Sharek, M Hennessy, M Phillips, S Schofield
The inclusion of medical humanities with medical curricula is a question that has been the focus of attention for many within the evolving field. This study addressed the question from a medical education perspective and aimed to investigate what students at Trinity College Dublin learned from participating in a short medical humanities student-selected module in their first year of an undergraduate medical programme. A total of 156 students provided a written reflection on a memorable event that occurred during their student-selected module. The reflections were analysed using the Reflection Evaluation for Learners’ Enhanced Competencies Tool (REFLECT) and through qualitative thematic analysis of the written reflections. Evidence of learning from the REFLECT quantitative analysis showed that 50% of students displayed higher levels of reflection when describing their experience. The reflection content analysis supported the heterogeneous nature of learning outcome for students, with evidence to support the idea that the module provided opportunities for students to explore their beliefs, ideas and feelings regarding a range of areas outside their current experience or world view, to consider the views of others that they may have not previously been aware of, to reflect on their current views, and to consider their future professional practice.
Editorial: Childbirth and Reproduction
Gareth Williams and Ian Rees Jones
The sociology of childbirth emerged in the 1970s largely as a result of influences from outside sociology. These included feminism, maternity care activism, the increasing medicalisation of childbirth, and evidence-based health care. This paper uses the author’s own sociological ‘career’ to map a journey through four decades of childbirth research. It demonstrates the importance of social networks and interdisciplinary work, particularly across the medical-social science divide and including cross-cultural perspectives, argues that the study of reproduction has facilitated methodological development within the social sciences, and suggests that childbirth remains on the periphery of mainstream sociological concerns.
Researchers have deemed medicalisation a ‘gendered’ theory, yet the incorporation of men and masculinity in medicalisation literature is sparse. Recently, however, medicalisation scholarship has begun studying men. This burgeoning literature heavily emphasises sexuality and is beginning to focus on medicalised masculinities in which traits associated with masculinity are deemed a health risk. Such research has demonstrated how masculinities shape men’s lived experiences of health, but how does health itself shape masculinity? I explore this question using the case of infertility. Through thirty in-depth interviews, I find that men use medicine as a way to achieve rather than diminish their sense of masculinity in the feminised context of reproduction. By perpetuating the stereotype that infertility is a woman’s problem, the medical establishment has caused men to not necessarily see themselves as infertile. Additionally, even if men do claim the infertility status, they do not perceive it as negative. The legitimating effects of medicalisation objectify the ailment and separate its connection with sexuality. In centring men’s voices, the study not only reveals men as active players in the reproductive process, but also incorporates them into understandings of medicalisation.
‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis
Nicky Hudson, Lorraine Culley, Caroline Law, Helene Mitchell, Elaine Denny, Nick Raine-Fenning
The concept of biographical disruption has been widely applied in sociological explorations of chronic illness and has been subject to much theoretical scrutiny, reflection and development. However, little attention has been given to the impact of biographical disruption beyond the individual level. This article explores the concept from a dyadic perspective, utilising data from an exploratory, qualitative study (ENDOPART) that investigated the impact of endometriosis on women and their male partners. In total, 22 couples participated in in-depth, semi-structured, face-to-face interviews. The women and their partners were interviewed separately and, in most cases, simultaneously, by different interviewers. Data analysis was informed by an interpretivist relational approach, foregrounding the meanings participants applied to their experiences, treating interviews as accounts, and exploring partners’ accounts in relation to one another. Two analytic approaches generated several themes for exploration in the context of the concept of biographical disruption: sex and intimacy; planning for and having children; working lives and social lives. The article argues that biographical disruptions are social and inter-relational processes and discusses how couples living with endometriosis negotiated these disruptions, how they were appraised and how lives and expectations were revised as a result.
‘You’re looking for different parts in a jigsaw’: foetal MRI (magnetic resonance imaging) as an emerging technology in professional practice (open access)
Kate Reed, Inna Kochetkova, Susan Molyneux-Hodgson
Magnetic resonance imaging (MRI) was first introduced into clinical practice during the 1980s. Originally used as a diagnostic tool to take pictures of the brain, spine, and joints, it is now used to visualise a range of organs and soft tissue around the body. Developments in clinical applications of the technology are rapid and it is often viewed as the ‘gold standard’ in many areas of medicine. However, most existing sociological work on MRI tends to focus on the profession of radiology, little is known about the impact of MRI on a broader range of clinical practice. This article focuses on MRI use in pregnancy, a relatively new application of the technology. Drawing on empirical research with a range of health professionals (from radiologists to pathologists) in the North of England, this article asks: how do different types of health professionals engage with the technology and to what end? It will argue that MRI use in pregnancy offers an increasingly important piece of the diagnostic jigsaw, often acting as a bridging technology between medical specialties. The implications of this will be explored in the context of broader sociological debates on the ‘visualisation’ of medicine and its impact on professionals.
Families dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1
Daniele Carrieri, Hannah Farrimond, Susan Kelly, Peter Turnpenny
Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family – bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a ‘condition without parameters’. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.