In the Journals

In the Journals, March 2021, Part 2

Part 2 of “In the Journals” for March 2021 includes a special issue in New Genetics & Society, “Organizing Precision Oncology” and a special forum in Science as Culture, “From Radical Science to STS.” This is in addition to the articles already highlighted by Gabrielle Hanley-Mott in Part 1 of this month’s “In the Journals” and a special issue of Culture, Medicine, and Psychiatry: “On Embodied Belonging.”

New Genetics & Society

This special issue, “Organizing Precision Oncology” is edited by Pascale Bourret, Patrick Castel, Henri Bergeron & Alberto Cambrosio. It collects research articles focusing on precision oncology from the perspective of Science and Technology Studies and Organization Studies.

“Organizing precision oncology: introduction to the special issue” (open access)

Pascale Bourret, Patrick Castel, Henri Bergeron & Alberto Cambrosio

In lieu of an abstract, here is the first paragraph of the introduction:

This Special Issue (SI) on “Organizing precision oncology” features a number of articles initially presented at an International Workshop on “Organizational and epistemic innovation in precision cancer medicine” that took place in November 2018 in Paris. The Workshop was convened to mark the conclusion of a project supported by the French National Cancer Institute (INCa), entitled “Targets and trials: A sociological investigation of personalized cancer medicine in action (PERSONA).” The papers included in the SI have been revised and updated to reflect developments in the two years since the workshop was held. As hinted by the title of the Workshop, they investigate the implementation of precision oncology by focusing on the nexus between organizing and experimenting. The SI thus includes contributions that interface Science & Technology Studies (STS) and Organization Studies to analyze how clinicians and researchers deploy genomic platforms (Cambrosio et al. 2018) and the socio-technical and organizational arrangements that act as a condition of possibility for the performance of this new kind of clinical medicine.

“Local mutations: on the tentative beginnings of molecular oncology in Britain 1980–2000” (open access)

Steve Sturdy

Popular and scientific accounts of the molecularisation of cancer typically attribute it to advances in laboratory science, particularly molecular geneticists. However, historical research has indicated that clinical expertise input was often vital for advancing such work. The present paper reinforces that view. Looking in detail at British research into the molecular genetics of familial cancers during the 1980s and 1990s, it shows that that research, too, depended on crucial input from family cancer clinics. Moreover, the development of clinical services for familial cancers was in turn shaped by the demands of contributing to molecular genetic research. The paper concludes that accounts of the molecularisation of cancer that suppose a one-way transfer of knowledge and practice from laboratory to clinic misrepresent the complex interactions that were involved in molecularising familial cancers, and that were informed by the particular local and national circumstances in which they took shape.

“Epistemic dwelling: precision immuno-oncology by design” (open access)

Luca Chiapperino, Nils Graber & Francesco Panese

This paper details how the architectural features of a new cancer research center (henceforth “NCRC”) contribute to the alignment of different institutional settings, epistemic approaches and communities of practices around precision immuno-oncology. First, we show how the building’s designed emplacement produces an organizational change directed at accelerating the traffic of discoveries and the collaborations across basic research and clinical practice. Second, we focus on the contribution of the NCRC’s internal design (i.e. its laboratory spaces) to a larger spatial, epistemic and social (re)organization of (local) experimental practices of patient-tailored immunotherapies development. Our focus on the articulations of spaces, experimental systems and epistemic socialities allows us to characterize our observations of the NCRC as epistemic dwelling. This notion, we maintain, highlights how the NCRC goes beyond the physical networking of neighboring experimental practices and rather encompasses a generative process of co-habitation of a novel socio-spatial-technical unit of scientific activity.

“Beyond full jurisdiction: pathology and inter-professional relations in precision medicine” (open access)

Henri Bergeron, Patrick Castel & Audrey Vézian

The rise of precision medicine represents a challenge for pathology, which must now more closely link research and diagnostic and collaborate on new bases with other specialties. Our paper is based on the study of four French cancer centers invested in developing precision medicine. Molecular biology is particularly threatening for pathologists in settings where medical oncologists and biologists believe that the discipline is capable of presiding over if not altogether replacing morphology as the principal basis for diagnosis. However, we will show that the organizational arrangements for circulating tumor specimens and producing diagnoses, as well as the place occupied by pathologists in these arrangements, have varied from place to place and over time. These configurations are the result of preexisting arrangements and local negotiations among professionals, where the aim is rather to include and coordinate specialties within the production line rather than exclude them from the jurisdictional remit.

“Organizing the precision clinic: arranging expertise, knowledge and technologies in cancer precision medicine clinical trials” (open access)

Stefano Crabu

The aim of this article, which draws on qualitative research focussed on working practices around a genomic-informed clinical trial, is to contribute to the ongoing debate on how care professionals and biomedical investigators mobilize collective expertise in and across organizational settings to shape so-called precise knowledge in cancer medicine. In so doing, the paper discusses three interrelated issues concerning the day-to-day practices of those doing what they are supposed to do to produce knowledge capable of enacting a precision oncology regimen: (i) situatedness and reshuffling of the professional jurisdiction (work always takes place in a texture of practices influencing how the work is understood and carried out); (ii) organizing technologies (mobilization of different kinds of medical technologies to produce knowledge when carrying out work practices as a vehicle for epistemic negotiation); and (iii) articulation work (the centrality of cooperative work to enact trial work).

“Data curation-research: practices of data standardization and exploration in a precision medicine database” (open access)

Niccolò Tempini

Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could be potentially generated from them. I call these efforts “data curation-research” and use the case study of COSMIC, the Catalogue of Somatic Mutations in Cancer, to analyze the contextual factors shaping the science of data curation-research. I build on March’s organizational learning categories of exploitation and exploration to place these factors within a theory of organizational change and innovation, and contribute to a richer picture of the social drivers of cancer genomics.

“Beyond nosology? Molecular tumor boards, singularization, and the conflation of diagnosis and therapy” (open access)

Alberto Cambrosio, Jonah Campbell & Pascale Bourret

This article partakes in a number of recent attempts to map the reconfiguration of clinical work as part of the deployment of precision oncology. We focus on the platforms, in particular Molecular Tumor Boards, that act as a condition of possibility for implementing innovative experimental interventions, and which are part of the emergence, beyond the traditional confines of diagnosis, of a data “ecosystem” geared towards increasing patient access to drugs matched to their genomic profile. MTBs are a key component of this singularization process, and their activities are central to the looping mechanisms that connect the diagnosis of individual patients to the revision of diagnostic categories. These categories are no longer “merely” diagnostic but operate as predictive guides to therapy.

“Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities” (open access)

Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross & Sarah Cunningham-Burley

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.

Science as Culture

“Alignment Work: Medical Practice in Managing Antimicrobial Resistance”

Hedvig Gröndal and Tora Holmberg

Policies intended to reduce unnecessary use of antibiotics have been promoted as a key to preventing antimicrobial resistance. However, reduction of antibiotic use in health care potentially involves tensions between health of the patient receiving care and the health of the (future) population. An analysis of general practitioners’ talk about everyday medical practice in relation to respiratory tract infections shows how they manage to move between policy and patient interests through ‘alignment work.’ Alignment work is the discursive strategies used to manage risks and demands related to antibiotic resistance as well as patients receiving health care. Through alignment work conflicting demands and risks can be juggled, and antibiotic prescribing becomes discursively doable. Alignment work is not solely a matter of making conflicting demands and risks coherent, but might also involve leaving tensions and ambiguities intact. It enables general practitioners to align with AMR policy and the imperative of being restrictive with antibiotics, while still managing the risks threatening individual patients. As a consequence, lapses from AMR policy do not necessarily undermine it, but can instead be crucial to allowing the policy to work in the context of actual medical practice and, as such, be crucial to the overall success of the policy.

This issue also includes a special forum, “From Radical Science to STS,” edited by Peter J. Taylor and Karin Patzke, collecting the social biographies of several STS scholars. 

“From Radical Science to STS”

Peter J. Taylor & Karin Patzke

In lieu of an abstract, here is the first paragraph of the forum introduction:

Many people who went on to become scholars and writers about technoscience in its social context, that is, to become contributors to the field now called Science and Technology Studies (STS), were involved in or influenced by counter-cultural and radical activities from the late 1960s, ‘70s and ‘80s. This Science as Culture forum consists of responses to a call to make sense of the biographical (or autobiographical) changes of such radical scientists and critical commentators on technoscience. Or to make sense of ways that subsequent STS academics have been influenced by that earlier generation and by the ‘proliferation’ since ‘of new institutions of deliberation, participation, activism, enterprise, and social movement mobilization’ (Moore et al., 2011, p. 505). These biographies of technoscience in this social context reveal the relationships, instruments and outcomes of power struggles as the scholars and writers have contributed the field of STS.

“From the Radical Psychology Movement to STS: A Journey From the 1960s in Multiple Parts”

Phil Brown

Activism in the late-1960s through the early 1970s in the radical psychology movement created the foundation for an intellectual critique and political practice that was part of a group of overall radical science movements that would become important components of STS in practice. The radical psychology movement emphasized lay perspectives in science and medicine, public participation in science, alternative care, and citizen-science alliances. The anti-psychiatry movement among professionals complemented this phenomenon. Groups such as Psychologists for a Democratic Society and numerous mental patients’ rights groups, publications like The Radical Therapist, radical caucuses in professional organizations, and a burgeoning feminist therapy approach helped create a major challenge to normal science in the mental health sector. Participants in these movements were connected to broader health activism and to radical science efforts. Lessons from these challenges to the status quo were useful in developing critical environmental health and justice movements later on, resulting in civic science and community-based participatory research projects which would become central elements of STS. These traditions also nourished a strong co-existence of scholarship and activism in many arenas of science and medicine.

“(Feminist) STS and Autobiography: Early Inspirations, Current Concerns”

Adele E. Clarke

This contribution first describes early, largely progressive influences on STS and myself, sketching diverse groups concerned with sciences, technologies and especially medicines. I then turn to my own early activist concerns and their later scholarly and other manifestations, situating my feminist women’s health activism and development as an early transdisciplinary STS scholar increasingly nourished transnationally. Last, I reflect on where I now stand, with feminist and other STS colleagues, and what we face at this point in the twenty-first century – some anguished yet hopeful intersections of history and autobiography.

“Reflections on a Life in Science and STS”

Brian Martin

“Capitalisms, Generative Projects and the New STS”

Kelly Moore

Mainstream science studies has long marginalized the intersection of capitalisms and technoscience, instead placing interactionist, liberal, and Foucaultian analysis at its forefront, and has had little to say about scientists as critics of the capitalizations of knowledge. Yet at the interstices of the field, scientists, decolonial, feminist, and critical race scholars were engaging capitalisms in ways that rejected conventional Marxism. Some of the roots of these analyses were visible in the journal Science for the People (SftP) revived in 2019, after thirty years of dormancy. Newer journals, including Tapuya, Catalyst, and East Asian Science, Technology and Society are re-engaged capitalisms in ways that extend some of SftP’s early analyses, and provide entirely new starting points that are enlivening the field. Using my own biography and historical analysis, I trace how and why the analysis of science and capitalisms was marginalized, and how it has come to be critical to contemporary science studies.

“The Insights of Radical Science in the CRISPR Gene-Editing Era: A History of Science for the People and the Cambridge Recombinant DNA Controversy”

Alyssa Botelho

In the wake of controversy over human embryonic gene-editing with CRISPR/Cas9 technology, scientists have looked repeatedly to the 1975 Asilomar Conference on Recombinant DNA (rDNA) as a model for adjudicating gene-editing today. However, STS scholars have long critiqued Asilomar as a case of insular scientific self-regulation, and other histories from the early biotech years offer fresh insights for those pursuing an equitable gene-editing landscape in the CRISPR era. Some of the first scientists to approach genetic engineering with a deep understanding of power were the biologists in the radical movement Science for the People (SftP). In 1976, SftP learned that Harvard University was planning to build a high-containment facility for rDNA and fostered a unique moment of democratic technoscientific governance in Cambridge. SftP’s radical framework for regulating rDNA differed from Asilomar’s liberal approach in important ways. While their colleagues at Asilomar ignored the social consequences of rDNA, SftP biologists produced incisive analyses of genetic reductionism, the commercialization of biotechnology, and the public regulation of science – and shared their ideas widely. Along the way, they fostered important intellectual connections with an early community of radical and feminist science studies scholars who were investigating emerging issues around genetic engineering.

“Making Visible a Collage of Radical Scientists and Critics”

Peter J. Taylor

Taylor proposes the question, “How do we make sense of radical scientists and critics of science in relation to their changing contexts?” After identifying individuals who came to STS after being involved in popular movements of the 1970s, contesting the directions taken in science and technology, he proposes three themes to guide inquiry into the question: transitions, transversals, and tensions. Each of these themes illustrate how different directions (resistance, revival, resignation, ramifications, regularities, reframing), marked shifts in the focus of the intellectual work and lives for some (or perhaps many) of those individuals. These transitions can be seen as linked into a transversal project of exploring ways to stimulate researchers (and students training to become researchers) to self-consciously examine the complexity of their social situatedness so as to change the ways they address the complexity of the situations they study.

Science, Technology, and Human Values

“Wax Moulages and the Pastpresence Work of the Dead”

Órla O’Donovan

In this article, I use a nineteenth-century anatomical collection of wax moulages, currently off-staged in the storage facilities in the university where I work, to think about the matter of human remains. Rather than seeing the gross pathology moulages as inert teaching resources, I propose they are agential assemblages, entangled in which are human remains, and that they can be included amongst the dead. I consider their capacity to perform pastpresence work, a particular kind of work of the dead that foregrounds erasures, such as the erasure of the many confined women suffering from syphilis whose bodies were used to cast moulages. This article considers how such pastpresence work might help us be response-able for uncared-for remains, such as the remains of “disappeared” women and infants who died in so-called Mother and Baby Homes, which have reappeared at the center of contemporary Irish public life. At a time when moulages are being reexhibited in museums internationally, I speculate about whether and how the collection might be restaged to perform subversive and utopian pastpresence work, destabilizing the erasures of conventional narratives of medicine and contributing to the crafting of a new and more careful order of things.

“Sensor-floors: Changing Work and Values in Care for Frail Older Persons”

Sidsel Lond Grosen & Agnete Meldgaard Hansen

Based on an ethnographic study in a Danish residential care center, this article shows how the interplay of a sensor-floor technology and currently influential values of person-centeredness, privacy, and security in care transforms care work and care interactions between residents and care workers. Based on an understanding of care as realized in a heterogeneous collective of human and nonhuman actors, this article illustrates how new modes of monitoring and interpreting residents’ care needs at a distance arise, and how a new organization of work focusing on quick and responsive care is established. These new care practices lead to conflicts between the values of privacy and security, to ambivalent experiences among care workers of simultaneously increased security and insecurity in work, and, paradoxically, also often to a decentering rather than person-centering of care. Instead of accommodating simultaneous compliance to the values of privacy, security, and person-centeredness, the use of the sensor-floors makes the tensions between these values continuously and loudly present in daily care practices.

“Renting Valuable Assets: Knowledge and Value Production in Academic Science”

Clémence Pinel

This paper explores what it takes for research laboratories to produce valuable knowledge in academic institutions marked by the coexistence of multiple evaluative frameworks. Drawing upon ethnographic fieldwork carried out in two UK-based epigenetics research laboratories, I examine the set of practices through which research groups intertwine knowledge production with the making of scientific, health, and wealth value. This includes building and maintaining a portfolio of valuable resources, such as expertise, scientific credibility, or data, and turning these resources into assets by carefully organizing and managing their value. Laboratories then put these assets to productive use within and outside their labs toward the creation or extraction of value. I identify two models for producing value within academic science: a commodity-based model whereby laboratories mobilize their assets to produce results, which can be converted into publications for the accumulation of credibility capital, and a rentier model of accumulation whereby laboratories own valuable assets, which they rent out to others outside their lab against revenue. Following recent developments in Science and Technology Studies on value production in the bioeconomy, I argue that the concepts of asset and rent are essential analytical tools for getting to grips with the origins of value within academic science.

“Misoprostol: The Social Life of a Life-saving Drug in Global Maternal Health”

Margaret E. MacDonald

This paper is about a drug called misoprostol and its controversial clinical and social lives. Although originally developed as a prevention for gastric ulcers, in the 1980s, it developed an off-label reputation as an abortifacient. The drug’s association with clandestine abortion has profoundly shaped its social life as a marginal and suspect character in the realm of global maternal and reproductive health where it has the potential to prevent two major causes of maternal death––postpartum hemorrhage and unsafe abortion. The social life of misoprostol has also been shaped by the question of authoritative practice, that is, the question of who can deliver medicine. Both issues are about the specters of misuse of misoprostol: off-label, illegal, immoral, or by unlicensed providers. In this paper, I focus ethnographically on two women’s health nongovernmental organizations that have been conducting clinical testing and advocacy for the use of misoprostol for reproductive indications in global maternal health settings. Drawing on the notions of pharmaceutical activism and protocol feminism, I describe and analyze how the tools of evidence and authoritative practice have been reassembled in new networks of expertise toward the social justice goals of life, access, and dignity for women.

Social Science & Medicine

“Fundamentally uncaring: The differential multi-scalar impacts of COVID-19 in the U.S”

Patricia J. Lopez & Abigail H. Neely

2020 in the United States was marked by two converging crises—the COVID-19 pandemic and the large-scale uprisings in support of Black lives. These crises were met with both a counterproductive and inadequate response from the federal government. We examine these converging crises at the individual, social, and political scales. The biological realities of COVID-19 impact different populations in widely varied ways—the poor, the elderly, Black, Indigenous, and people of color, and those living with comorbidities get sick and die at the highest rates. Social distancing guidelines shifted millions of people to work-from-home and millions more lost their jobs, even as care laborers, preponderantly women, Black, Indigenous, and people of color, were asked to put their and their loved ones’ lives on the line for the continuation of all of our lives. These biological, social, and economic crises have been punctuated by civil unrest, as millions took to the streets for racial justice, noting the unequal impacts of the pandemic. These converging crises have laid bare decades of neoliberal and neoconservative policies and ideologies, undergirded as they have been by racial capitalism, for their fundamental uncaringness. In this paper, we argue that this pandemic not only made a wider population more acutely aware of the necessity and importance of the need to care and for caring labors, but also that we stand at the precipice of potentiality–of producing a more caring society. To frame our argument, we draw on Nancy Scheper-Hughes and Margaret Lock’s (1987) framework of three bodies—individual, social, and political—to unpack the multi-scalar entanglements in the differential impacts of COVID-19, questions of care, and their articulation in the current political-economic context.

“Actionable data for precision oncology: Framing trustworthy evidence for exploratory research and clinical diagnostics”

Niccolò Tempini & Sabina Leonelli

Huge amounts of genomic data produced by researchers around the world undermine data-centred discovery and therapeutic development. This paper considers how researchers make decisions about the actionability of specific datasets and the conditions that allow such data to be trusted. We discuss the case of COSMIC, a leading cancer genomics database which aggregates a large amount of sources. We research what the actionability of cancer data means in different situations of use, contrasting exploratory and diagnostics research. They highlight different questions and concerns upon genomic data use in medical research. At the same time, strategies and justifications pursued to evaluate and re-use can also share important similarities. To explain differences and similarities, we argue for an understanding of actionability and trust in data that depends on the goals and resources within the situation of inquiry, and the social epistemology of standards.

“Antibiotics, rational drug use and the architecture of global health in Zimbabwe”

Justin Dixon, Salome Manyau, Faith Kandiye, Katharina Kranzer & Clare I.R. Chandler

Rising concerns around antimicrobial resistance (AMR) have led to a renewed push to rationalise antibiotic prescribing in low- and middle-income countries (LMICs). There is increasing unease in conceptualising antibiotic use as individuals behaving ‘(ir)rationally’ and recognition that rising use is emergent of and contributing to wider economic and political challenges. But in between these individual and societal ‘drivers’ of antibiotic use is an everyday articulation of care through these substances, written-in to the scripts, delivery chains and pedagogics of global healthcare. This article focuses on this everyday ‘architecture’ that over time and across spaces has knitted-in antibiotics and rhetorics of control that inform current responses to AMR. Based on historically informed ethnographic research in Zimbabwe, we examine points of continuity and change between 20th Century rational drug use (RDU) discourses and contemporary socio-political formations around AMR and antimicrobial stewardship (AMS), paying particular attention to their co-evolution with the process of pharmaceuticalisation. We illustrate how the framework and techniques of RDU were embedded within programmes to increase access to essential medicines and as such complemented the building of one of Africa’s strongest postcolonial health systems in Zimbabwe. Whilst 20th Century RDU was focused on securing the health and safety of patients and affordability for systems, AMS programmes aim to secure medicines. Continuous through both RDU and AMS programmes is the persistent rhetoric of ‘irrational use’. Health workers in Harare, attuned to the values and language of these programmes, enact in their everyday practice an architecture in which antibiotics have been designed-in. This research illustrates the struggle to optimise antibiotic use within current framings for action. We propose a reconfiguring of the architecture of global health such that frontline prescribers are able to provide ‘good’ care without necessarily turning to antibiotics. To design-out antibiotic reliance would require attention beyond ‘(ir)rationality’, to the redrafting of blueprints that inscribe practice.

“Playing Russian roulette with their kids: Experts’ construction of ignorance in the California and Ohio measles outbreaks”

Natalie Kay Fullenkamp

Vaccination has become a site of professional and social concern, particularly as parents choose not to vaccinate their children. Previous research in medical sociology has considered the role of parents, knowledge, and health beliefs within vaccination debates. Yet, what has been overlooked is the expert construction of ignorance that emerges in conflicts over vaccination. This construction crystallizes in news media coverage of public health crises created by un- or under-vaccinated populations. Drawing on the sociology of science and the social problems tradition, this article performs a comparative case analysis to reveal that experts’ status as privileged knowers affords them the capacity to frame ignorance itself. Using a content analysis of two measles outbreaks—one in California at Disneyland and the second among the Amish in Ohio—I show how experts do not simply traffic in objective, knowledge-based claims. Rather, they incorporate moral valences into these claims, which become apparent through their assessments of ignorance. Experts in the news shape the epistemic contours of the debate, calling out Californians as willfully ignorant, while excusing the Amish as unintentionally ignorant. This framing of ignorance is underpinned by the moral culpability of each population and its tractability to policy intervention. More broadly, this study reveals how expertise can be linked with and even supported by assessments of the causes and motivations of ignorance.

“‘I would want to pay her’: Challenging altruistic egg exchanges in Canada through moral patchworks”

Skye A. Miner

Studies surrounding egg donation often occur within existing legal marketplaces showing how language of altruism and gift is employed to uphold gendered standards of femininity and morality. This article examines how women negotiate those gendered and moral standards under the Canadian Assisted Human Reproduction Act (AHRA), which prohibited the market exchange of eggs through the criminalization of paid egg donation. Through 71 in-depth semi-structured interviews with health care professionals (n = 51) and egg donation recipients (n = 20), I argue that participants in these exchanges use a patchwork of moral framings to question the ethicality of the act and the gendered links between altruism, morality and femininity. These market participants employ moral patchworks consisting of subverting, circumventing and rejecting the legally defined ethical practice of donation. By explicitly discussing payment and gifts as moral egg donation exchanges, recipients and fertility professionals suggest that egg donors’ reproductive labor should be monetarily recognized. This article considers the ethical implications of these moral patchworks for understanding how gender is reproduced and undone in market exchanges.

“On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England”

Simon M. Dyson, Karl M. Atkin, Maria J. Berghs & Anne-Marie Greene

The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person’s disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The relational concepts of Anna Tsing (2015) – salvage accumulation, entanglement and precarity – were used as an analytical framework to assess the reported experiences. To understand the experiences of those with SCD and employment, it is necessary to apprehend the whole ecology of their bonds to their bodies; their social relationships of kin and family; and their wider social relations to communities. Paid employment breaks bonds crucial to those living with SCD. First, employers can only extract sufficient productive value from workers if they disregard the necessary self-care of a precarious body. Secondly, reproducing labour though child-care, housework and care work is a taken-for-granted salvage central to capitalism. Thirdly, voluntary and community work are salvaged for free by employers towards their accumulation of profits. People with SCD find bond-making activities that create the commons life-affirming, thereby reconfiguring our understanding of connections between disability and work. 

“‘We are to be like machines…fill the bed before it gets cold’: Exploring the emotional geographies of healthcare providers caring for dying residents in long-term care facilities”

Melissa Giesbrecht, Kelli I. Stajduhar, Denise Cloutier & Carren Dujela

The end-of-life context is imbued with emotions, with death and dying transforming everyday places, like long-term care facilities, into entirely new emotional topographies that can evoke profound effects on those who live and work within these settings. Despite their significant role, healthcare providers’ emotions and their interconnections with ‘place’ have received relatively little attention from researchers, including geographers of care and caregiving. This secondary thematic analysis attempts to address this notable gap by exploring the emotional geographies of healthcare providers caring for dying residents in four long-term care facilities in western Canada. By drawing upon interview and focus group data with administrators (n = 12) and direct care provider (n = 80) participants, findings reveal that experiences of caring for dying residents were often charged with negative emotions (e.g., distress, frustration, grief). These emotions were not only influenced by social and physical aspects of ‘place’, but the temporal process of caring for a dying resident, which included: (1) Identifying a resident as in need of a palliative approach to care; (2) Actively dying; and (3) Following a resident’s death. Findings indicate that providers’ emotions shifted in scale at each of these temporal phases, ranging from association with the facility as a whole to the micro-scale of the body. Broader structural forces that influence the physical and social place of long-term care facilities were also found to shape experiences of emotional labor among staff. With an increasing number of deaths occurring within long-term care facilities throughout the Global North, such findings contribute critical experiential knowledge that can inform policy and programs on ways to help combat staff burnout, facilitate worker satisfaction, and foster resilience among long-term care providers, ensuring they receive the necessary supports to continue fulfilling this valuable caring role.

By Shoshana Deutsh

Shoshana Deutsh is a PhD Candidate in Science and Technology Studies at Cornell University.