Open Encyclopedia of Anthropology - Secrecy

Palliative care

Rebecca Tishler — Thu, 12 Oct 2023 08:09:23 +0000

Edvard Munch : The Sick Child, 1927, 6th in the Series. Photo: Munch Museum

Leiden University

Initially published 12 Oct 2023

Abstract:

Palliative care has been developing since the 1960s as a form of caregiving that focuses on the relief of suffering when there is no prospect of a cure or when a patient is at the end of life. Originating in the UK and US, palliative care has been taken up by global institutions such as the World Health Organization (WHO), and implemented in various cultural and socioeconomic settings. Anthropological studies have long been highlighting the wide variety of experiences and needs in illness and dying and have problematised the supposedly universal ideas behind palliative care. After a brief discussion of the historical and institutional development of palliative care, this entry highlights the links between palliative care principles and notions of a good death. It then turns to the medicalisation of death and the primacy of choice in palliative care discourses. It elaborates on anthropological studies that have observed how palliative care comes to relate to existing end-of-life care practices and the diversity with which local practitioners and care recipients give shape to this new care paradigm. Finally, it discusses various cultural and moral attitudes towards disclosure and concealment of dying as a site of friction in palliative care.

Introduction

Palliative care is commonly understood as professional caregiving that focuses on the relief of suffering when there is no prospect of a cure or at the end of life. Its central aim is to provide comfort, by focusing on symptom management and pain relief, as well as psychosocial and spiritual care. The word ‘palliative’ stems from the Latin pallium, which translates as ‘to cloak’ and is associated with the aim of providing comfort and alleviation that is inherent in palliative care. While definitions of palliative care continue to be subject of debate, as will be outlined below, the most commonly cited is the 2002 World Health Organization (WHO) definition:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (84)

Derived from hospice care, palliative care has been developing since the late 1960s into a form of caregiving that is practiced in various care institutions as well as in home care settings. Palliative care has developed into an interdisciplinary field of expertise in and of its own, with prominent contributions from medical disciplines such as nursing, oncology, and geriatrics, as well as social work and social sciences, and its practical implementation is accompanied by a range of studies on best practices and the development of palliative care tools and models.

While palliative care is considered to have originated in the UK and builds on preceding developments in care for the dying in Western Europe and the US (Clark 2016), it has since then been promoted and taken up in other parts of the world. However, it cannot be assumed that palliative care is developing across the globe in the same manner and with the same effect. Hence, anthropologists have begun to study palliative care as a particular mode of end-of-life care that comes with particular sets of values and norms, exposing how it comes to exist alongside, reform, or replace existing end-of-life care structures and practices across geographical and institutional settings.

From an anthropological perspective, palliative care is approached as emerging from, and embedded in, cultural contexts, where it forms one particular way of managing illness and dying. As such, it has grown into a topic of interest both to researchers who position their work in the anthropology of death and in medical anthropology. Through immersive fieldwork, anthropologists have shed light on the lived experiences of patients, caregivers, and their networks. Taking critical as well as constructive approaches towards the paradigm of palliative care, anthropologists have asked questions such as: How is palliative care used in organisations and embedded in health systems? And how is care negotiated and what values does it reflect? Recognising, further, that death is not the great equaliser it is sometimes portrayed to be, but rather that dying is characterised by inequalities and difference, anthropologists have been interested in how access to palliative care is distributed between people of different backgrounds and across the globe. Also, anthropologists are critically assessing the use of terms like ‘dignity’, ‘quality of life’, and ‘comfort’ which are central in palliative care and are reflected in the WHO definition, and taking up the empirical question of what such terms come to mean in their local context.

In the sections that follow, and drawing on a range of anthropological studies, this entry first discusses the historical and institutional development of palliative care. It proceeds with a discussion of the ideals underlying palliative care and its connections to notions of a ‘good death’. It then turns to the medicalisation of death and the primacy of choice in palliative care discourses. Finally, reflecting on the uptake of palliative care in diverse cultural settings, it discusses various cultural and moral attitudes towards disclosure and concealment of dying as a site of friction in the palliative care paradigm.

Genealogy of palliative care

The development of palliative care can be traced back to the 1960s and 1970s. It emerged as a response to the then-dominant focus on curative practices in healthcare, while patients were increasingly living with chronic conditions for which no cure was available (Clark 2007). By contrast, palliative care focuses on improving the quality of life of people who are dying or who live with a chronic condition. Although it does not exclude curative treatment, one of the key aims of palliative care has been to relieve suffering, including psychological, social, and emotional, as well as physical pain.

As founder of the first modern hospice in 1967 in the UK, Cicely Saunders is considered a pioneer in the development of palliative care (Clark 2002, 2007, 2016; Seymour 2012). Her work in oncology as a nurse and hospital almoner, and later as a medical doctor, provided her with a unique perspective on patients’ conditions. She observed a lack of pain control in cancer patients, and became concerned with what she called ‘total pain’: the suffering of patients that extends beyond physical pain and reaches to their entire being, including social, physical, mental, and emotional distress. Around the same time, Elisabeth Kübler-Ross, through her work in hospitals and as a lecturer in the US, advocated a novel focus on the needs of dying patients and support for families and is credited with opening up the possibility to discuss death in Western society (Blaylock 2005; Sisk and Baker 2019). Both Saunders and Kübler-Ross have been central figures in the development of palliative care.

From the 1980s onward, palliative care rapidly developed into an area of specialisation that has been incorporated across different disciplines, including oncology, nursing, and geriatrics. In practice, palliative care is usually provided by multidisciplinary teams, involving for instance medical doctors, social workers, psychologists, nurses, and spiritual advisers. Medical associations and dedicated journals have been established to delineate the field of palliative care. Hence, palliative care is both a field of knowledge and a professional practice. The European Association of Palliative Care (EAPC) was founded in 1988, the Latin American Association of Palliative Care (ALCP) in 2000, and the Asia Pacific Hospice Palliative Care Network (APHN) in 2001 (Clark 2007). Additionally, palliative care has gradually become, or is in many countries in the process of becoming, embedded in national health structures, as well as in global health programmes. While palliative care was initially focussed on oncology, this has gradually broadened to other (chronic) illnesses, including HIV/AIDS, and increasing attention has been paid to the potential benefits of palliative care for older people (Davies and Higginson 2004; Visser, Borgstrom and Holti 2020). While this reflects the ‘holistic’ character of palliative care, this also implies palliative care is subject to a wide variety of interpretations, approaches, and backgrounds.

Considerable discrepancies in approaches and definitions remain, and these continue to be the subject of debate among researchers and practitioners alike (Pastrana et al. 2008). The WHO published its first definition of palliative care in 1990 and revised it in 2002. The latter (cited above) continues to be commonly used, but has since then been reformulated, both by the WHO itself and other organisations such as the International Association for Hospice and Palliative Care (IAHPC) (Radbruch et al. 2020). Additionally, many organisations that provide palliative care in practice will describe it in their own terms (Hui et al. 2012). Often, these definitions reflect in one way or another Saunders’ concept of ‘total pain’, as palliative care is described as holistic, person-centred, and provided by multidisciplinary teams, and is associated with meaning and dignity at the end of life.

However, anthropologists have shown that, within these broad characteristics, in practice the concept also remains unclear as some practitioners use the terms ‘terminal care’, ‘end-of-life care’, and ‘palliative care’ interchangeably (Lemos Dekker, Gysels and van der Steen 2017), while others explicitly differentiate them (Hui et al. 2012). Also, the use of ‘hospice care’ outside of hospice settings where others might use the term ‘palliative care’ indicates that the boundaries of the concept are not always clear.

Furthermore, the anthropological record has demonstrated that health systems and institutions are often unequally accessible, to which palliative care is no exception. The degree to which palliative care is accessible or integrated in health care systems varies widely between countries (Clark et al. 2020), and may further be influenced by a patient’s positioning in terms of class, ethnicity, and gender (Richards 2022).^{^[1]} Also, the often limited and unequally distributed availability of opiates, limitations in a patient’s mobility, and institutional structures can challenge the accessibility of palliative care (Knaul et al. 2018).^{^[2]}

As this entry will show, palliative care is embedded in diverse cultural contexts, and as such is interwoven with particular values, practices, and beliefs. Anthropological studies have underscored the wide variety of ways in which illness and dying are perceived and treated, as well as the variety of needs and expectations across social and cultural settings (Souza, Borgstrom and Zivkovic 2021; Zaman et al. 2017). This great diversity inherent in care means there is an important role for anthropologists in showing how palliative care is provided differently across cultural and institutional contexts; how people of different backgrounds, including professionals, patients, and families, each relate to it; and how they use and adapt palliative care’s key principles to fit within their own work, lives, and networks (Samuels and Lemos Dekker 2023).

Palliative care and the good death

Anthropologists have generally taken a contemplative approach to palliative care, to shed light on its underlying values and its implications at a sociocultural level. In particular, this research has underscored that palliative care is informed by ideals that are associated with a ‘good’ death. Hence, palliative care has been suggested to form a specific, institutionalised approach to operationalising ideals of a good death and to bring these into medical practice (Hart, Sainsbury and Short 1998; McNamara 2004).

Anthropological studies have demonstrated that the good death forms a moral objective that underpins people’s narratives, decisions, and actions (e.g. Hart, Sainsbury and Short 1998), whereby anthropologists have asked what a good death is to different individuals and groups, unravelling the social and cultural dynamics of how people experience, manage, and plan for the final stages of life and death (Long 2005; Seale and van der Geest 2004; Zaman et al. 2017). This body of literature has highlighted the variations as well as similarities between cultural groups with regard to their perceptions of what constitutes a good death, such as the commonly shared preference for a death without suffering. It has also shown the value that is attributed to the place, timing, and social circumstances of death (Driessen, Borgstrom and Cohn 2021; Kaufman 2005; Lemos Dekker 2018; Stonington 2012). Taken together, the aspects that are attributed to a good death in a particular cultural context reflect what people commonly value at the end of life and the societal norms regarding death and dying, and provide directives for how the end of life should be managed. As such, the good death is taken as an ethnographic object by looking at the efforts that are put into its achievement.

Ideals of a good death can thus be understood to inform a wide range of palliative care practices, discourses, and experiences. This includes, in particular, its aim to provide comfort and to relieve suffering at the end of life in psychological, social and physical domains. However, in practice this ideal can be difficult to achieve as it is linked to experiences of (bodily) decline and notions of dignity. For example, Julia Lawton’s (2000) ethnographic research in hospice wards in the UK underscores the fundamental importance of bodily deterioration, which, she suggests, has a ‘non-negotiable’ impact upon patients’ sense of self (16). Lawton highlights significant disparities between the ideology of palliative care and what she calls the bodily realities of degeneration and dying. She shows that the dying process in many cases does not conform to normative goals of a calm, pain-free, and dignified ‘good death’, and suggests that the ideological underpinnings of palliative care may offer little room for deaths that do involve pain and distress.

Furthermore, as researchers in anthropology and related disciplines have demonstrated, the place of death plays an important role in the perception of a good death. In many cultures, the home is seen as the ideal place of death, while the clinical space of the hospital is often disfavoured. Nevertheless, it is quite common for people to be hospitalised as part of care provided at the end of life. Similarly, nursing homes and long-term care institutions may not be regarded as ideal places for dying, and yet are common places of death. Hence, a discrepancy may occur between the actual and preferred place of death (Kaufman 2005; Stonington 2020; Visser 2019). Addressing these concerns, palliative care institutions and staff, the ethnographic record shows, often put great effort into creating a ‘homely’ atmosphere, a place that is familiar to patients and their relatives (Pasveer 2020; Lemos Dekker and Pols 2020). For example, Annelieke Driessen, Erica Borgstrom, and Simon Cohn (2021) describe the efforts of palliative care teams in a UK hospital to create a familiar, personal, and meaningful space for the dying person in the institutional environment, in order to make it suitable for dying—a practice the authors call ‘placing work’. Following Scott Stonington’s (2012, 2020) research in northern Thailand, home and hospital may be understood as ‘ethical locations’, as each place may hold different ethical frameworks through which death and dying are managed and valued. Stonington discusses what he calls ‘choreographing a good death,’ which refers to the strategies through which people manage the end of life. This involves planning and improvisation so as to influence the place and timing of death, whereby families make use of, and navigate, biomedical systems as well as local and communal practices of approaching death. Stonington (2020: 1-8) describes an instance of a dying person who was brought into the hospital so as to make sure they would receive all viable treatment, but was finally hurried back home to die to ensure their death would happen in the ‘right place’, reflecting ideas of the home as a moral space that would ensure the process of rebirth.

Likewise, anthropologists have demonstrated that palliative care is concerned with the timing and duration of the dying process. In her seminal ethnography, …And a time to die: how American hospitals shape the end of life (2005), Sharon Kaufman discusses how the medical bureaucratic system of hospitals in the US has become increasingly focused on the timing of death. In particular, decision-making at the end of life, such as decisions to continue or withdraw treatment, are concerned with postponing or allowing death, and can thus be seen as an attempt at exerting control over when death occurs. While her focus is on dying in hospitals in general, she notes that palliative care is integrated into hospitals as one form of end-of-life medical practice through which such questions of timing are negotiated. Although the moment of death is in many cases very difficult to predict, palliative care seeks to understand and gain control of time at the end of life. Accordingly, advance care planning (ACP) is, especially in Western contexts, often an explicit aspect of palliative care. ACP is often used in institutional care settings as a process through which patients, often in consultation with medical professionals and family members, establish their wishes and preferences to inform caregiving at later stages. While ACP in palliative care usually involves directives regarding dying and death, it may also include medical as well as psychosocial preferences in long-term care more generally. Palliative care, then, through its various tools and ACP, operates along the idea that anticipating care needs, and preparing for illness trajectories, will improve caregiving. More fundamentally, with this focus on timing, palliative care further channels the idea that an anticipated death is a controlled, and thus ‘good’, death.

This striving towards a good death is both implicitly and explicitly incorporated in the various models, tools, and practices of palliative care. Anthropological inquiry into such tools has shown that they may seek to coordinate caregiving and to transfer palliative care values in a standardised manner. Together with Erica Borgstrom, my work (Borgstrom and Lemos Dekker 2022) examines the Liverpool Care Pathway (LCP) as a tool that seeks to shape the dying process in accordance with ideals of what a good death is. The LCP is a document that is used to mark the onset of the ‘palliative phase’ and to communicate between care professionals that caregiving should shift to a focus on comfort and the management of specific symptoms. We draw on ethnographic research in care institutions in the UK and the Netherlands, to show that the tool is used to impart moral values, to standardise practices, and to demonstrate a sense of professionalism. Moreover, this ethnographic comparison shows that the use of such tools in practice can be expected to differ significantly from their intended use, and varies between geographic and institutional settings since they require interpretation and adaptation.

Choice and medicalisation

Palliative care continues to be promoted by some as an alternative to the hegemony of biomedicine, as it shifts attention from life-prolonging treatment to well-being and comfort. Anthropological work has investigated this seeming discrepancy between care and cure. Kaufman’s (2005) research on death and dying in hospitals in the US underscores that palliative care, with its focus on comfort, is at odds with the curative focus of hospitals. This plays out in negotiations over what kinds of ‘treatment’ are recognised and funded within the hospital system, whereby Kaufman suggests that even though most people die in hospitals, these institutions were generally unable to provide the kind of death that people would prefer. Related to this, and based on fieldwork with palliative care staff in the UK, Erica Borgstrom, Simon Cohn, and Annelieke Driessen (2020) have signalled that when palliative care is framed in contradiction to curative care, patients, families, and even medical professionals may perceive it as ‘doing nothing’. The authors show that what is seen as intervention or non-intervention depends on what practices are valued in care relations, whereby ‘palliative care becomes “nothing” when a cure is posited to be the only form of success’ (2020: 209). Accordingly, a key challenge in palliative care is to convey that withholding curative treatment is no longer taken to be a medical failure, but rather reframed as viable care at the end of life.

At the same time, palliative care is not wholly antagonistic to the medicalisation of death—that is, the process through which death is framed as a medical concern and which reflects the idea that death can be managed and controlled through medical knowledge and technological possibilities (Green 2008; Howarth 2007; Kaufman 2005, 2006). Asking how hospital medicine shapes the conditions for death, Kaufman (2005) further shows that the end of life is characterised by planning and decision-making, whereby patients and their families, in consultation with medical professionals, become responsible for often difficult choices, for instance of whether or not to continue life-prolonging treatment. As such, Kaufman writes, ‘death has entered the domain of choice’ (Kaufman 2005: 326). However, in practice, patients and their families may lack the specialised knowledge necessary to make informed decisions and may be unable to oversee the illness trajectory ahead or the consequences of (advance) decisions (Kaufman 2005). In her ethnographic study of end-of-life care in England, Borgstrom (2015) unpacks the rhetoric of choice, showing that this is intimately linked to neoliberal understandings of individual autonomy. She gives an example of a man who, despite the insistence of care professionals, refused to write down whether he preferred to be cared for at home or in an institution, because he considered this to be dependent on how his wife would cope with his care. In this case, advanced decision making did not resonate well with the uncertainty of changing care needs. Problematising the notion of choice, Borgstrom thus shows that it fails to address ‘the relational, and often subtly negotiated, nature of care’ (Borgstrom 2015: 709). Devin Flaherty (2018) also sheds light on the limitations of choice by discussing a case in the US Virgin Islands, where older adults have turned to hospice care due to lacking possibilities of receiving curative treatment. Hence, she demonstrates that the ‘choice’ to enter hospice care may be less based on an acceptance of death, than on how different forms of care are covered within the health care system. While palliative care thus incorporates a responsibility to make the right choices or establish preferences in advance, as well as ideals of individual autonomy, these studies show that such notions are not always clear-cut.

Moreover, anthropologists have demonstrated that patients may be sceptical towards decision-making, as this may invoke the fear of being unable to undo decisions or of relinquishing control (Borgstrom 2015; Zivkovic 2018). For Beverly McNamara (2004), the increased emphasis on patient autonomy and choice is at odds with the original conception of a good death in hospice and palliative care, which is based on open communication and acceptance of death. In her ethnographic research among Australian palliative care practitioners, she shows that the wishes of patients, which may be to extend curative treatment despite efficacy, were at times prioritised over palliative care principles. Accordingly, she suggests, palliative care in practice became reduced to medical symptom management, and puritan notions of a good death were replaced with a ‘good enough death’. In a similar manner, Marian Krawczyk (2021) has explored the experiences of palliative specialists in Canadian hospitals. She focuses on the affective labour of these professionals and shows how they organise patients’ dying trajectories, not only in terms of their biomedical and physical needs, but also with the aim of defining and ordering ‘appropriate’ emotional responses. In so doing, she argues that hospital palliative care can be seen as an affective economy in which ambiguity, negotiation, and conflict are not failures, but rather constitutive components of the institutional and professional employment of palliative care principles. Anthropologists have thus shown how ideology and practice merge, clash, and change over time, and how palliative care pushes against biomedical frameworks yet continues to operate within the limits and affordances of a medicalised system.

(Non-)disclosure at the end of life

A key contribution of anthropologists to the field of palliative care has been to demonstrate how seemingly universal principles and definitions are being understood, taken up, and challenged in local, sociocultural contexts, and to look in detail at how palliative care is being provided in and beyond care institutions such as hospitals and nursing homes, as well as at home (Samuels and Lemos Dekker 2023). Stonington (2020), in his work on end-of-life care in Thailand, shows that palliative care was conceived of as a new concept and discussed only in its English terminology in an otherwise Thai linguistic context, showing a glimpse of the friction in the cultural adaptation of palliative care between globally circulating discourses and locally rooted practices. This conception of palliative care, as a new way of understanding and providing care at the end of life that comes to be in dialogue with pre-existing discourses and practices, further reveals some of the normative aspects of palliative care. Anthropologists have been calling this normativity into question, viewing palliative care alongside other resources and care practices (Stonington 2020; Zaman et al. 2017).

A clear example of how principles of palliative care may clash with existing care practices is the way in which people do, or do not, talk about death and dying. Palliative care, as indicated above, involves a focus on anticipating a patient’s disease trajectory and the process of dying. A common principle is that talking openly about the end of life between patients, families, and professionals improves decision making, whereby the patient’s knowledge that they are dying is thought to foster their autonomy. Stonington’s work in Thailand shows that, in the process of choreographing death, medical professionals and family members sought to maintain the moral spirit of the dying person and maintain hope by not disclosing diagnosis and prognosis. Similarly, McNamara (2004) demonstrated in the Australian context that the ideal of open discussion and acceptance of death may not resonate with a patient’s wishes. Along these lines, several anthropologists have demonstrated that cultures of end-of-life talk vary widely, and that letting a patient know they are dying is far from being a universally accepted good practice. To the contrary, in many cases discretion—not sharing a diagnosis or prognosis with either the patient themselves or with outsiders—has been argued to be perceived as a form of care and ethical practice (Banerjee 2020; Livingston 2012; Stonington 2020). Already in 1965, and based on fieldwork in US hospitals, sociologists Barney Glaser and Anselm Strauss published their volume Awareness of dying, in which they described interactions between staff, family, and dying patients, asking who knew about the terminal nature of the patient’s condition, and what each suspected the other to know. Through the concept of ‘awareness contexts’, they showed the nuanced ways in which forms of disclosure and concealment of dying may intersect, and that whether, how, and when to talk about dying is a moral question that involves professional ethics as well as personal values and experiences.

Dwaipayan Banerjee (2020) discusses similar dynamics of speech and concealment, or disclosure and discretion, as crucial aspects of the social relations that are formed and reshaped around life-threatening illness in his ethnographic research with an NGO that provides palliative care to cancer patients in Delhi. Giving a prognosis and a diagnosis of, in this case, cancer, can open up certain possibilities, including access to palliative care. However, it can also foreclose others, as it may result in stigmatisation and a loss of livelihood. In one example, Banerjee describes how the NGO deliberately parked their vans at a distance from the home of the patients they visited so they would not be seen by neighbours, with the aim of preventing stigmatisation of the patient. Such an exercise of discretion reflects a broader set of practices, in which patients, families, and professionals would avoid explicitly talking about cancer, the ineffectiveness of further treatment, or the prognosis of dying. Banerjee suggests that ‘knowing what not to say allowed for them to continue to live in the present, without compromising all hope of the future’ (2020: 41), thus showing the potentiality and ethical concern that may be enveloped in acts of non-disclosure.

Conclusion

Since its early development in the UK and US, palliative care has been taken up by global institutions such as the WHO and has been implemented in various cultural and socioeconomic settings. Hence, anthropologists have observed how palliative care comes to relate to existing end-of-life care practices, showing the diversity with which local practitioners and care recipients give shape to this new care paradigm. From these studies, palliative care emerges as a field of knowledge and practice that draws attention to the needs of dying and chronically ill patients and their networks. Often through the efforts of staff, palliative care has been carving a space for a particular focus on the relief of suffering within hospitals and care institutions. Palliative care, then, is not a single, clearly bounded idea, but a concept that is on the move. In many places, palliative care is relatively new, being advocated by a diverse group of medical professionals, and only gradually being embedded in health care policies. By looking in detail at how medical professionals communicate with patients and families about illness and the end of life, and the ways in which families among themselves do, or do not speak about this, anthropologists have been able to demonstrate that there are different ways of dealing with diagnosis and prognosis, and that what people find important at the end of life differs across cultural contexts. Accordingly, not only do care practices change in dialogue with this new approach, but also the concept itself is bound to be adapted.

Acknowledgements

The author would like to thank her colleagues in the Globalizing Palliative Care team, Dr. Annemarie Samuels, Hanum Atikasari, and Shajeela Shawkat, for their insightful comments on earlier versions of this text. She is grateful for the support of the previous editors of the Cambridge Encyclopedia of Anthropology and the current editors of the Open Encyclopedia of Anthropology, as well as for the insightful and supportive comments from the anonymous reviewers. This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 851437).

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Samuels, Annemarie, and Natashe Lemos Dekker. 2023. “Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study.” Palliative Care & Social Practice 17. https://doi.org/10.1177/26323524231198546.

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Souza, Margaret, Erica Borgstrom and Tanya Zivkovic. 2021. “Rethinking end of life care: Attending to care, language, and emotions.” Social Science and Medicine 291. https://doi.org/10.1016/j.socscimed.2021.114612.

Stonington, Scott D. 2012. “On ethical locations: The good death in Thailand, where ethics sit in places.” Social Science & Medicine 75: 836–44.

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Visser, Renske, Erica Borgstrom and Richard Holti. 2020. “The overlap between geriatric medicine and palliative care: A scoping literature review.” Journal of Applied Gerontology 40, no. 4: 1–10. https://doi.org/10.1177/0733464820902303.

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Zivkovic, Tanya. 2018. “Forecasting and foreclosing futures: The temporal dissonance of advance care directives.” Social Science & Medicine 215: 16–22.

Note on contributor

Natashe Lemos Dekker is a postdoctoral researcher at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her research focuses on death, dying, and end-of-life care, and dynamics of time and future-making in The Netherlands and Brazil. She was awarded her PhD from the University of Amsterdam and has published in the Journal of the Royal Anthropological Institute, Death Studies, and BMC Palliative Care, among others. She is a board member of the Medical Anthropology Europe Network (MAE-EASA).

Dr. Natashe Lemos Dekker, Institute of Cultural Anthropology and Development Sociology, Leiden University, Wassenaarseweg 52, 2333 AK Leiden, the Netherlands. N.Lemos.Dekker@fsw.leidenuniv.nl

ORCID: 0000-0001-5523-4523

[1] Within the field of palliative care, increasing attention is paid to diversity and inclusion. For example, the theme of the 2023 EAPC World Congress was “Equity and Diversity”. https://eapccongress.eu/2023/. Accessed 29 September 2023.

[2] World Health Organization. 2020. “Palliative care.” https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 2 November 2021.

Editor:

Riddhi Bhandari

Silence

Rebecca Tishler — Mon, 27 Feb 2023 19:22:35 +0000

Photo: VidaXL

Ana Dragojlovic Annemarie Samuels

University of Melbourne, Leiden University

Initially published 27 Feb 2023

http://doi.org/10.29164/23silence

Abstract:

Silence is a common occurrence in everyday social interactions, yet anthropological research, like most research in the social sciences and humanities, has mostly focused on what people say and do. Over the last couple of decades, however, there has been an increased attention to how the unsaid, the unspeakable, and the invisible shape social, political, and subjective worlds. In particular, anthropologists have theorised silence as more than just the opposite of speech. They have started to think of silence as a complex moral, affective, and social force. Anthropological rethinking of silence and voice has been particularly prominent in feminist traditions, in the study of care, and in decolonial scholarship that often studies silence as refusal and resistance. Attending to histories of silence and silencing has a potential to provide insights into different forms of structural oppression under which individual and collective strategies of survival might be falsely interpreted as mere compliance. Silence has also been important in research on ritual activity, where it is a prerequisite for communicating with ancestors, spirits, ghosts, and other apparitions. Here, silence can co-create a sense of hauntings as a response to repressed past and present forms of violence and harm. By attending closely to the unspoken and unspeakable aspects of language and art, anthropologists increasingly find new ways to include silences in their research and modes of representation. In these and other ways, the study of silence can greatly enrich our understanding of the social world.

Introduction

Like most research in the social sciences and humanities, anthropological research often focuses on what people say and do. Much less obvious are the unsaid, unspeakable, or invisible, and how these silences shape social, political, and subjective worlds. Nonetheless, explicit ethnographic attention to and theorisation of silence has been growing over the last decades, strongly influenced by feminist and decolonial scholarship and advances in narrative analysis—i.e. in the study of how stories, storytelling, and their silences and absences shape everyday life. Attention to silence has moreover been incited by anthropology’s reflexive turn, which since the 1980s has caused scholars to increasingly reflect on their own role in the production of knowledge and their decisions about what to write about and what to leave unspoken. Ruth Behar was one of the authors who developed experimental, self-reflective, and collaborative forms of writing that criticised prevalent silences about gendered and racialised dynamics in mainstream anthropology (Behar 1996, Behar and Gordon 1995).

A key tenet of anthropological work on silence is that it is often a presence in social life, rather than a mere absence of sound and voice. It can be a culturally specific form of experience (Basso 1970; Hastrup 1990). As a social, affective, and sensorial presence, silence can even become a moral and an active relational force. It enables or limits people’s ability to relate to each other in particular ways. When, for example, marginalisation and stigma loom, silence can be a vital strategy to create liveable lifeworlds. The non-disclosure of information can be crucial for people living with HIV, for instance, as in the face of severe discrimination their secrecy may allow them to keep leading their lives as much as possible as they did prior to their diagnosis (Black 2015; Moyer 2012; Samuels 2021). Similarly, sex workers may resolutely decide to not speak at all when state and non-state surveillance bodies question them about their past in interviews that, due to anti-trafficking measures, might foreclose their only possible source of income (Dasgupta 2014). People with a cancer diagnosis also sometimes use subtle, yet vital forms of concealment as they navigate imposing social and psychological demands. They may live ‘as if’ there were no diagnosis in order to continue to endure the already precarious conditions of everyday life for as long as possible (Banerjee 2020). Alternatively, silence may protect those who want to ‘elude’ a biomedical diagnosis, as may be the case for some people with symptoms of eating disorders (Shohet 2018).

Silence can also be shelter for those who want to avoid being absorbed into discourses of the state. Israeli youth who evade military service, for example, may not just do so by public refusal. Instead, they may resort to a ‘calculated passivity’ that allows them to altogether stay away from the public discussion on normative Israeli citizenship (Weiss 2016). Silence can also be suffocating, violent, and painful (Aretxaga 1997; Dragojlovic 2011; Warren 1993). At the same time, the silences that enable rhythm and ritual can be crucial ways of dealing with traumatic loss, as they entangle and evoke the entirely unspeakable or unspoken stories of longing that underlie such loss (Weller 2021). What all of these examples show is that silence is not a mere residue or background to supposedly real social action. Instead, it is an affective and relational activity (or the result thereof) that fundamentally shapes social worlds. Studying silence thus offers tremendous potential for critical engagement with people’s histories, the social structures that shape their lives, and with their personal experiences of inequality and exclusion (Dragojlovic 2021).

Within the burgeoning literature on silence, three themes are highlighted in this entry: the opposition of silence and voice; the haunting nature and effect of silence; and the importance of silence for narrative and representation. These topics stand out for their inspiring legacies and promising potential of contemporary anthropology of silence. Other themes in the anthropology of silence are equally important, yet not considered in depth in this entry due to limited space. Noteworthy, for example, is the extensive literature in the anthropology of music and sound studies on the relationship between silence and sound (or noise) (see, for example, Novak and Sakakeeny 2015; Robinson 2020; Voegelin 2010). Similarly, modern art has been assessed as having become a pursuit of the ‘aesthetics of silence’, driven to focus on negation, emptiness, and undoing yet continuously finding that the production of such silence itself entails a form of speech (Sontag [1967] 1969).

Silence and voice

Silence has long been theorised in relation to ‘voice’. The two terms are frequently opposed by arguing that voice actively ‘fills’ silence, while silence is a mere absence of voice. Anthropology has problematised this opposition by rethinking silence as a complex moral, affective, and social force. Ethnographic accounts of Holocaust descendants, for example, have shown that silent embodied practices can make the Holocaust present in everyday life so as to sustain its memory. This questions a simplistic opposition of silence and voice (see, for example, Kidron 2021). Three domains in which this rethinking of silence and voice is particularly prominent are Western feminist traditions, anthropologies of care, and decolonial approaches to silence as refusal and resistance.

Feminist traditions

The contention between ‘silence’ and ‘voice’ has a long and complex history in feminist traditions. Feminist academics, public intellectuals, and activists have continually argued that speech is the foremost means of achieving equality and empowerment (Ahmed 2017). Particularly significant for feminist discussions about ‘silence’ and ‘voice’ has been intersectional feminism, which understands individual identities as combinations of different modes of discrimination and privilege. The term ‘intersectionality’ was coined by Kimberlé Crenshaw (1991), an American civil rights advocate and critical race theorist who developed the term in the context of unjust legal treatment of African American women. US antidiscrimination laws tended to look at gender and race separately, meaning that a person could only be discriminated against based on either gender or race. Consequently, the law did not capture overlapping forms of discrimination that African-American women and other women of colour experienced. Given that these women were left with no adequate justice, Crenshaw developed a theory of intersectionality to show that different axes of inequality, discrimination, and privilege inform individual identities. These axes might be, but are not limited to, gender, race, ethnicity, sexuality, religion, ability, and nationality.

This notion of intersectionality fundamentally influenced feminist discussions on silence. For example, scholars who speak of the ‘racialization of silence’ (Ferrari 2020) challenge the assumption that ‘silence’ is associated with patriarchal domination. This assumption reflects the common experience of white middle class women, who led the second wave feminist movement in Euro-American contexts. However, it also falsely normalises their experience as that of all women. Against it, African American feminists have argued that African American women do in fact have a prominent voice in communal spaces such as church and the home (Lorde 1978; hooks 1989). They thereby highlight that the notions of ‘having a voice’, of ‘breaking the silence’, or of ‘speaking up’ may be insufficient as instruments of liberation. This leads them to call for a more nuanced analysis of multiplicity of silences (Ferrari 2020). We need to be aware that more often than not ‘the “voice,” “speech,” or “languages” of the colonized do not conform to Eurocentered, capitalist, colonial modern criteria’ in which ‘speaking up’ is associated with liberatory movements (Ferrari 2020, 134). Most people are simply not heard or recognised as being able to have a voice in the first place. Their forms of expression are reduced to the modes or voice of the colonised, and their ways of communicating ideas are misrecognised as nonsense. This misrecognition of voice is part of stripping racialised people of their humanity and dignity, to what Frantz Fanon has called ‘a zone of non-being’ ([1952] 2012, xii).

Other feminist scholars have similarly drawn attention to multiplicities, paradoxes, and possibilities of silence. The demand to speak up against oppression tends to place the burden of action on those least empowered. African-American women, or First Nations or gender diverse people are asked to make major interventions into their conditions of oppression. Here the liberatory idea of ‘speaking up’ obscures the labour needed for social change, placing expectations on those that historically have been marginalised (Malhotra and Carillo Rowe 2013). Furthermore, the idea of ‘voice’ as the only way of liberation might in fact overly ‘abstract from the concrete situations and lived experiences of those who inhabit silences’ (Ferrari 2020, 124). Take as an example the memoir of writer and academic Ernesto Martínez, in which he speaks of the childhood sexual assault committed against him by his cousin. Martínez’s immediate response to this act of violence was silence and stillness. Under these circumstances, feminist philosopher Martina Ferrari (2020) argues that his response cannot and should not be understood as compliance to oppression. Martínez remembers his silence not as plain passivity, but rather as an expression of what he calls ‘joto passivity’, that is, ‘the seeming nonresponsiveness of queer Chicanos in the face of violence, which contra (colonial) common sense, was also felt as resistant behaviour’ (124). This silence may have been an act of ‘radical meaning making from which Martínez could envision and bring about radically different gendered practices of resistance’ (Ferrari 2020, 125). For Martínez, ‘speaking up’ as a liberatory solution was not an option under the circumstances in which he lived. Instead, adopting ‘joto passivity’ as an embodied negotiation of appropriate modes of resistance allowed him to navigate his circumstances.

Thus, rather than insisting on a sharp division between ‘silence’ and ‘voice’, feminist scholars have been investigating conditions under which movement between speech and silences occur. They broaden our possibilities for a reconfiguring of the ‘silence’ versus ‘voice’ binary, arguing that both ‘silence’ and ‘voice’ can be part of complex strategies of engaging with structures of power (Malhotra and Carillo Rowe 2013; Ferrari 2020; Dragojlovic 2021). In this vein, contributors to the recent edited volume Silence, feminism, power: Reflections at the edges of sound (2013) argue that silence may constitute a deeper form of communication than sound: ‘Silence allows us space to breathe. It allows us the freedom of not having to exist constantly in reaction to what is said…’ (Malhotra and Carillo Rowe 2013, 2). Thereby they stress the liberatory possibilities of inhabiting silence—resisting, in Western discourse, ‘speaking up’ as a go-to form of liberatory practice.

Care

Anthropologists studying care have similarly theorised the complexity of silence, moving away from any clear dichotomy between silence and voice. This work often reveals how silence is a response to the moral and social demands of everyday life. For example, in her family-centred ethnography of social relations in post-war and post-socialist Vietnam, Merav Shohet (2021) points out how everyday sacrifices, such as foregoing one’s own wishes and aspirations in order to take care of family members, are socially valued. Yet in order to be valued, those who sacrifice—often women—should not draw attention to their predicaments, bearing their suffering in silence, even though this may be challenging and painful. In these everyday family contexts, muted forms of sacrifice for one another often count as moral care.

In the face of suffering, the effortful work of silence may also help sustain precarious social relations. For some, silence may be the most virtuous—yet incredibly effortful—way of enduring pain and loss (see, for example, Buch Segal 2016; Livingston 2012; Smørholm 2016). Even where narrative utterances like ‘you endure’ help to constitute enduring pain as virtuous, people may remain silent about some experiences simply because they are impossible to put into words (Throop 2010). Silence may also be a respectful response to suffering, as it may honour the privacy of suffering and thereby enable rather than obstruct healing after extreme violence (Jackson 2004). It can be part of muted practices of everyday support, for example when neighbours who know about one another’s economic hardship bring food without commenting on their reasons for doing so (Han 2012). Or, silence may constitute a deliberate effort to steer away from negative thoughts and emotions, as when people in Thailand make an effort to not discuss terminal illness and rather raise more cheerful topics to lighten up the mood of their interlocutors (Aulino 2019; see also Stonington 2020).

These moral and social dimensions of silence need not be seen apart from the sensorial experience of stillness. Indeed, silences can powerfully index the present absence of both voice and sound. People living with dementia in the Netherlands have described that while they could break the unsettling silence of their homes by ‘making some noise’ in the sense of making actual sounds, it is only going out for a walk that really helps them to overcome the vicissitudes of ‘still’ moments that negatively affect their lives (Vermeulen 2020, 200). For them, the sensorial silence that might be broken by making noise is not independent from the silence of solitude, the absence of sociality and care. Or take the ethnographic description of people living and dying in the misery and abandonment of Vita, an asylum for homeless, mentally ill, and dying persons in Porto Alegre, Brazil:

These individuals wandered around in their dusty lots, rolled on the ground, crouched over or under their beds – when there were beds. Each one was alone; most were silent. There was a stillness, a kind of relinquishment that comes with waiting, waiting for the nothingness, a nothingness that is stronger than death. (Biehl 2005, 35)

João Biehl describes this asylum as a ‘zone of social abandonment’, a place where ‘voice can no longer become action’ (2005, 11). Here, the silencing of people’s social and political voice can be sensed in stillness. While sensorial aspects of silence are here part and parcel of adjusting to an unchangeable and dehumanising status quo, it can fulfil other functions. Care as well as socio-political change may come from such experiences of silence. The stillness of Thai meditation practices, for example, shows how the practice of silence as the deliberate absence of speech enables a shift of sensory focus toward non-verbal expression, and thereby changes one’s embodied experience of the world (Cassaniti forthcoming). As Julia Cassaniti argues, by effecting a new embodied attunement to the world and opening up new interpersonal spaces, silence may have powerful personal and intersubjective effects, leading people to change social relations with the world and others.

Refusal and resistance

Feminist and decolonial anthropologists have for a long time been studying multiple forms of silence and secrecy as a kind of refusal and resistance (Visweswaran 1994). Anthropologist Kamala Visweswaran charts multiple and contradictory uses of silence and secrecy as forms of resistance among activist women in Southern India. In her encounter with a woman she calls ‘M’, Visweswaran charts M’s frequent detours into silence, highlighting the importance of anthropological writing about silence, and how anthropologists give meaning to silences they encounter. Visweswaran also makes a reflexive point about ethnographic writing, as she stresses that, ‘the story I give you is not exactly about this woman … it is rather more about how I negotiate and understand the construction of a silence, how I seek to be accountable to it’ (1994, 60). Visweswaran does not only focus on comprehending multiple levels of silence in the contexts she is writing about. Instead, she as an anthropologist takes responsibility and accountability for how her own writing might be implicated in silences of those she is writing about. Anthropological knowledge produced through such careful attention to silences can be considered ‘situational knowledge’ (Visweswaran 1994, 49). This term emphasises the conviction that all knowledge comes from specific positional perspectives (Haraway 1988). In this case, these perspectives are not just shaped by what is said, but also by what people are silent about.

Understanding the origins, nature, and effects of silence is also crucial to make sense of histories of anthropological representations of Indigenous people. For a long time, ‘anthropology has imagined itself to be a voice, and in some disciplinary iterations, the voice of the colonized’ (Simpson 2007, 67; also 2014). "This framework had characterised much of earlier anthropological work ‘on’ Indigenous people (2007, 67-8), and it accorded with Europe’s imperialist and colonialist projects. Anthropologist Audra Simpson, a citizen of the Kahnawà:ke Mohawk Nation, therefore set to study the Mohawks of Kahnawake in Canada and the United States by developing a critical new take on this tradition. Her goal was to pay attention to what mattered to her interlocutors, rather than focusing on how they were ‘different’ to anthropologists. What emerged was an ‘ethnography of refusal’, which focused on the ways in which Kahnawakero:non (i.e. the people of Kahnawake) had refused the authority of the state ‘at almost every turn’ of their history (2007, 73). Simpson’s work demonstrates the methodological and the theoretical productivity of focusing on collaborators’ refusals, in order to acknowledge and embrace what has been marginalised, excluded, and silenced previously. When she tries to address histories of subjugation and dispossession with one interviewee, for example, the person tells her repeatedly that they do not know the answers to her questions. She interprets their silence as a desire not to make a difficult past verbally explicit, given that both she and the interlocutor know what happened and know that each other knows. Silence as refusal of ‘speaking outwardly’ should therefore not be seen as the absence of agency, but as an act of sabotage or ‘an overlooked component of ethico-political thought’ (Kanngieser and Beuret 2017).

Various forms of silence and refusal can be part of reinventing our ways of living and relating (i.e. ‘commoning’) in times of the Anthropocene, as suspending assertions on how the world is, or how it should be, can have productive potential (Kanngieser and Beuret 2017, 364). If we approach the Anthropocene as the outcome of centuries of colonial and neo-colonial capitalist dispossession, silence can constitute an attractive or necessary refusal to participate in the forms of governance that got us into our current situation (including speech-based activism of the contemporary Left).

Haunting silences

Silence and silencing are often associated with experiences of personal or interpersonal violence, and collective experiences of violence and various forms of structural oppression (Dragojlovic 2020). This has been shown by various disciplines, from the mid-twentieth century onwards, including psychoanalysis (Abraham and Torok 1994), philosophy (Derrida 1986; 1993), sociology (Gordon 1997; Cho 2008), gender studies (Rwe and Malhora 2013; Dragojlovic 2018; Ferrari 2020), history (Trouillot 1995), and anthropology (Good 2019; Kwon 2006; Kidron 2009; Argenti and Schramm 2009). For example, the historian and anthropologist Michel-Rolph Trouillot (1995) has explored the complex relationship between historical violence and silence in the history of Haiti. He argues that the interrelated nature between social memory and official historical narratives always produce a ‘bundle of silences’ (1995: 27). Trouillot’s pioneering work demonstrated that the recording of historical events is not a mere collection of details about events, but a process through which some events are completely or partially silenced, either deliberately or unconsciously. This is particularly important when it comes to silencing resistance to oppression, such as with the Haitian Revolution, which Trouillot demonstrates was one of the most successful and historically relevant slave revolts in history. The importance of silence in the aftermath of historical violence has been studied across different socio-cultural settings. Silence has been transmitted across generations from Holocaust survivors and survivors of Cambodian genocide, to memories of slavery, and the transmission of traumatic loss in Taiwan (Argenti and Schramm 2009). Following the Vietnam War, domestic life in Southern Vietnamese villages was marked by silence in the aftermath of massacres of unarmed civilians. At the same time, villagers kept engaging in intimate—but muted—ritual actions (Kwon 2006). Ghosts, spirits, apparitions, and hauntings have often been associated with silence and silencing as a response to violence (Dragojlovic 2018, 2020).

Work with the children of Holocaust survivors has led scholars to develop a psychoanalytic theory of intergenerational phantoms (Abraham and Torok 1994). Such phantoms are produced by the ignorance of family secrets, falsifications of the truth, and sheer disregard for the past that create conditions for producing hauntings across generations (1994, 169). Building on a Freudian approach to the unconscious, which treats the unconscious as a repository of unacceptable ideas, Nicolas Abraham and Maria Torok argued that family secrets can be wrapped in silences and buried in a metaphorical, psychological ‘crypt’. Such secrets are not only stored within those that directly experienced trauma, but also transmitted across subsequent generations: ‘What haunts us are not the dead, but the gaps left within us by the secrets of others … the burial of an unspeakable fact … like a stranger within’ (Abraham and Torok 1994, 3). Crucially, they argued that such traumatic intergenerational transmissions can be healed once secrets and silences are unpacked and revealed. French philosopher Jacques Derrida brought these psychoanalytic insights to the attention of a wider audience (Davis 2013, 54) and subsequently developed his own theory of ‘hauntology’ (Derrida 1993). He coined the influential term ‘spectrality’ to speak of a persistent return of a range of ideas from the cultural and social past in the manner of a ghost. As he put it,

Spectrality does not involve the conviction that ghosts exist or that the past (and maybe even the future they offer to prophesy) is still very much alive and at work, within the living present: all it says, if it can be thought to speak, is that the living present is scarcely as self-sufficient as it claims to be; that we would do well not to count on its density and solidity, which might under exceptional circumstances betray us (cited in Davis 2013, 53-4).

Influenced by Derrida’s idea that the past is incomplete, sociologist Avery Gordon (2008) argues that hauntings are important sociological phenomena that deserve substantive scholarly attention. Making a direct link between various forms of historical injustice—from slavery to the disappeared in Argentina, and from the recent ‘war on terror’ to torture and deportation—Gordon argues that those who were seemingly forgotten can illuminate the injustices they suffered through the act of haunting. For Gordon (2008, xvi), haunting is an animated state through which unresolved and repressed social violence makes itself known in often unexpected ways, such as through ghostly appearances. In her take on hauntings as social phenomenon, a ghost is not just a person who is missing or dead, but a social figure who is deeply implicated in the social life of the living and is crucial for the continued production of subjectivities and histories (Gordon 2008, x). Gordon’s sociological approach to hauntology has been immensely influential across the humanities and social sciences, in particular for scholars working on histories of epistemic injustice and enforced forgetting. Particularly significant has been a study of the systemic erasure of memory about the yanggongju, Korean women who acted as sex workers for US servicemen during the Korean War, many of whom subsequently became war brides and eventually pioneered Korean migration to the United States (Cho 2008). Grace Cho’s careful analysis reveals how the enforced forgetting of the yanggongju permeates the consciousness of Koreans. They are now ghostly figures that are at the same time present and absent, who ‘[move] in and out of visibility’ (Cho 2008, 14).

Intergenerational experiences of silence under ongoing conditions of structural inequalities can manifest as acts of ‘haunted speakability’ (Dragojlovic 2021). For example, in a performing arts event in the Netherlands that engages families’ complex intergenerational, interracial genealogies, aspirations to make visible past injustices are challenged by the artists’ family’s embeddedness in long histories of structural violence. These histories do not only inform what can be made visible through speech, but also often reproduce the structures of the very inequalities they aspire to dismantle (Dragojlovic 2021). Haunted speakability, then, reflects people’s feeling of urgency to instigate social justice and points to the limitations of speech as a means of achieving equality (Dragojlovic 2021). The idea of haunted speakability urges further questions about recovery and care, not only for those who themselves directly experience violence, but also for those for whom the affective afterlives of violence might resonate intergenerationally, under ongoing conditions of inequality (Dragojlovic 2021). The scholarship on haunting silences further contributes to rethinking and theorising silence as a complex relationship between narrative articulation and unspoken, embodied ways of inhabiting the world.

Narrative and representation

Much like as an awareness of haunting requires attunement to the social world rather than a turn away from it, attending to the unspoken in narrative and discourse warrants a close examination of language. It relies on a careful listening to the stories people do and do not tell; the slightly longer pauses, hesitating beginnings, whispers, rumours, gossip, and embodied narration (see Shohet and Samuels forthcoming). Who tells stories to whom, and whose stories are heard, and by whom? The analysis of women’s testimonies for South Africa’s Truth and Reconciliation Commission has shown that on the surface, women’s narratives speak mostly of violence against men (Ross 2001). Yet, the anthropologist Fiona Ross (2001) contends, if we listen differently, we hear how by telling these stories, women actually also speak about their own experiences. Women tell about physical violence experienced by men from their own vantage point, in passing referring to police harassment of their families, the shattering of kin over geographical distances, the absence of men, and the silence and secrecy in their politically active families. They hint at even more silent experiences of women’s suffering. Similarly, women’s stories of the violence of the Partition of India in 1947 are enveloped in a ‘zone of silence’ (Das 2007). This does not mean that nothing was said about this period, but rather ‘that the words had a frozen-slide quality to them, which showed their burned and numbed relation to life’ (Das 2007, 11). These narratives suffused by silences destabilise the certainty that language may seem to bring. Silence, then, is only at the far end of a continuum of uninterpretability of which speech and narrative are similarly part (Weller 2017).

Close attention to those stories at or beyond the edges of public recognition, moreover, reveals how silences undergird dominant discourses. Experiences hitherto unspoken may still transpire in whispers, gossip, rumour, song, spirit possession, images, a raised eyebrow, or an offhand remark. What is silenced in public discourse may be invoked in what Merav Shohet (2021) calls ‘sideshadowing narratives’: nonlinear and often ambiguous stories told through gossip and in other more private, sometimes whispered, conversations. Unlike the theological unilinearity and normativity of ‘backshadowing’ and ‘foreshadowing’, these narratives embrace indeterminacy and contradiction, invoking possibilities without providing resolution. In her account of a Vietnamese family caring for their comatose grandmother, Shohet shows how all family members take part in the caregiving, keeping up the image of a harmonious family. Yet, on a private occasion, two relatives tell in ‘sideshadowing’ whispers about their grudges against the near-dying matriarch and her husband, resulting from—in their eyes—moral missteps from the past that may now have caused her pitiful condition as a form of karmic retribution (Shohet 2021, 140-56).

Often, it is not only the story told, but also the context, the unspoken range of experiences and structures that surround narratives, that shape the (im)possibilities of articulation. A striking example can be found in the ethnographic study of children living with HIV in Brazil, whose narratives about their illness include the experiences of non-illness. Their silence, nonverbal communication, and multivocal narratives of social worlds shape the children’s stories at least as much as verbal articulation does (Abadía-Barrero 2011). The subjunctive mode of narrative is particularly important here. It allows people to think in multiple ‘what if’ scenarios of the future and the past. It helps them think through multiple possible trajectories of what might happen or might have happened, which they do particularly often at troublesome moments in their lives, such as when struggling with illness (Good and Good 1994). At such moments, the subjunctive mode may similarly allow for not fully thinking through all of these possibilities, sustaining the silent futures or pasts that are barely thinkable, for example because they might include scenarios of death or social exclusion (Samuels 2018, see also Mattingly 2014).

Aesthetic forms and visual practices may also articulate that which resists articulation in language. Images, performances, and works of art can affect people in a way that exceeds discourse. To understand how visual expressions communicate the unspeakable affectively, we need to stop contrasting silence to voice or speech. Voice, speech, silence, and visual expression intersect in different modes of articulation and non-articulation in that visual expressions may speak in ways that words cannot; for example, in the ways people living with HIV invest in healthy appearances and even makeup to distract from gossip (Samuels 2021). Art can tell stories without words. The discursive framing of art, meanwhile, may amount to new forms of silencing, as in the case of Syrian refugee artists who stop with their artistic work to escape from humanitarian projects of ‘refugee art’ that seek to aestheticise experiences of loss and displacement (Chatzipanagiotidou and Murphy 2021). Such humanitarian projects commission ‘refugee art’ as a commercially attractive genre, while artists feel their placement in a particular category with limited room for selecting their own topic is silencing their artistic creativity. The silence of those refugee artists who decide to withdraw from art for this reason may be seen as a ‘tactic of agentive creativity’ (Chatzipanagiotidou and Murphy 2021, 15).

The potential violence of verbal representation that Audra Simpson (2007) highlights in her work on refusal always raises dilemmas in anthropological writing, and perhaps particularly in writing about silences. For example, a poignant dilemma for ethnographers analysing life stories concerns the ethics of analysing what people may have chosen to leave unsaid. Addressing this question, Kirin Narayan (2004) proposes the juxtaposition of multiple life stories, as listening to one story may help to recognise the meaningful silences in others. Thereby, ethnographers may find patterns of meaningful silence without necessarily having to interpret all silences of one individual’s narrative. At the same time, Narayan cautions that life stories, including silences, are produced in interpersonal processes of which the anthropologist is a part and that as writers we may also want to leave uninterpreted. Struggling with a similar dilemma, Merav Shohet (forthcoming) argues for combining person-centred ethnography with historical contextualisation, striking a delicate balance between respecting a person’s self-chosen silences and avoiding reiterating historical injustice through continuous omissions. As both Narayan and Shohet show, navigating the tension between respecting silence and critically analysing its socio-historical conditions is an integral part of ethnographic engagement with silence.

Anthropological representations take greater liberties than most social sciences. In trying to reflect the concepts and concerns of the people they study, anthropologists may embrace unknowability and present stories from multiple perspectives, without resolution, realising that it may be impossible to construct a univocal narrative. A powerful example is Sarah Pinto’s writing and rewriting of the narratives about Lata, a young woman treated in the psychiatric unit of a government hospital in northern India (2012, 2014). In her narration of the many stories told by and about Lata, Pinto includes silences, gaps, and contradictions, concluding that there may simply not be one comprehensive and linear narrative of Lata’s illness. Proposing a ‘hermeneutic of missing it’, she argues for ethnographic writing with the multiple unresolved contradictions in layers of stories, creating an understanding that is ‘less illuminating in the strength of its coherence than revealing in the gaps between incompatible ways of telling’ (Pinto 2014, 224).

Like visual art, poetry can communicate the unspoken without discursively putting it in place. Several powerful poems by anthropologists have directly addressed the topic of silence, including Nandini Gunawardena’s ‘Silenced’ (2004), which describes the violence in Sri Lanka in the late 1980s, and Renato Rosaldo’s ‘Silence’ (2014), in which he invokes the moment he receives the news of his wife Michelle Rosaldo’s death, a moment when suddenly all the ordinary sounds of the Philippine village he stays in seem to abruptly come to an end. Many anthropologists illuminate the unspoken affectively by using poetry in representation and articulation, especially where prose falls short of making space for silence. Anthropological engagement with silence therefore encourages the expansion of our ethnographic tool kit, for example by using ‘poetry, disordered speech, embodiment, lamentation, dreams and other elliptical communication’ (Varma 2020, 31). At the same time, it means embracing the limits of knowability and our collaborators’ refusals to be known. Writing with silences, then, may entail multiple ways of staying with gaps, contradictions, and unintelligibility.

Conclusion

Silence is a ubiquitous presence in our social world. Sometimes barely noticeable, sometimes strongly sensed, what silence means and does in subjective and social life is not always easy to discern or interpret. An anthropological approach to silence leaves room for uncertainty, unknowability, and multivocality. At the same time, if offers ways to attend to what silence does, as a form of oppression, a refuge, an act of care or refusal, a haunting ghost or an untold story in the shadow of public discourse. A careful look at silence shows that silence and voice are not necessarily clear opposites, and neither is voice—or sound—necessarily ‘filling’ silence. Practices of ‘giving’ voice may result in other silences. Questioning who and what we see and don’t see, who and what is heard and who and what is unheard, unspoken, or unspeakable is vital to critical work on structural and historical inequalities, and rethinking anthropological practices of research and representation. Even if often opaque, silences demand our attention and analysis as much as speech and sound do. What has been silenced, by whom, and for what reason has much to tell us about social relationships, moral orders, relations of care, and the complex ways through which people navigate structural forms of oppression, endeavouring to make their lives liveable under multiple forms of social inequalities.

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Note on contributors

Ana Dragojlovic is Associate Professor of Gender Studies at the University of Melbourne, Australia. She works at the intersection of feminist, queer, postcolonial, and affect theory and is the author of Beyond Bali: Subaltern citizens and post-colonial intimacy (2016, Amsterdam University Press), co-author of Bodies and suffering: Emotions and relations of care (2018, Routledge, with Alex Broom), co-editor of Gender, violence and power in Indonesia across time and space (2020, Routledge, with Kate McGregor and Hannah Loney) and co-editor of a special issue, Tracing silences, in History and Anthropology with Annemarie Samuels.

Ana Dragojlovic, School of Culture and Communication, Faculty of Arts, The University of Melbourne, Victoria 3010 Australia. ana.dragojlovic@unimelb.edu.au.

Annemarie Samuels is Associate Professor at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her current research focuses on narratives and silences of end-of-life care. Her published work focuses on care, disaster, narrative, silence, and HIV/AIDS in Indonesia, and includes the monograph After the tsunami: Disaster narratives and the remaking of everyday life in Aceh (2019, University of Hawaii Press) and a special issue in History and Anthropology called Tracing Silences, co-edited with Ana Dragojlovic.

Annemarie Samuels, Institute of Cultural Anthropology and Development Sociology, Leiden University, Wassenaarseweg 52, 2333AK Leiden, The Netherlands. a.samuels@fsw.leidenuniv.nl