Open Encyclopedia of Anthropology - Care

Surveillance

Rebecca Tishler — Tue, 05 Dec 2023 12:21:46 +0000

Activists from No CCTV stage a 2013 anti-surveillance protest in Birmingham. Photo by Brett Wilde.

Vita Peacock Mikkel Kenni Bruun Claire Elisabeth Dungey Matan Shapiro

King's College London

Initially published 5 Dec 2023

Abstract:

Surveillance—watching over through human and/or non-human technologies for an intended purpose—can connote a dystopian imaginary in which all activity becomes visible before a hostile gaze. Anthropology has explored and complexified this picture. While surveillance can enable intensive control over space, social categorisation, and the affective states of large societies, among other things, such asymmetries can also be evaded, refashioned, or reversed. Surveillance can take place from above (‘panoptic’) but also laterally (‘synoptic’), or from below (‘sousveillance’). Indeed, in the field of human relationships it is not always apparent who is watching who. Because of the vast range of human response to being monitored, surveillance infrastructures—particularly when implemented at scale—often do so within moral discourses that are regionally specific, and vital to their legitimacy.

The field of surveillance studies has extensively explored surveillance as a mode of security and policing, and this emphasis has shaped early anthropological engagements with the subject. With the growth of computerisation, surveillance has become more relevant to a variety of other ethnographic contexts. Digital monitoring now plays an expanding role in forms of care, public and private health, communication, and the management of work, in which the harvesting of data for profit always remains a near or distant possibility. An emerging ‘anthropology of surveillance’ invites us to consider not only conditions of visibility, but also their perpetual relation to what is not seen. Here the moral question is not whether surveillance itself is good or bad, but how and why are human beings rendered visible through technology, and under which circumstances do they seek to remain opaque?

Introduction

In its popular form, surveillance often connotes a dystopian imaginary in which all activity becomes visible before a hostile gaze. Significantly inflected by George Orwell’s parable of totalitarianism, 1984 ([1949] 1990), in which citizens are watched and listened to at all times through telescreens, this imaginary surfaces at moments of social tension around new intersections between power and information collection. In scholarship, this connotation was given a paradigmatic and enduring shape by Michel Foucault’s influential text Discipline and punish ([1975] 2019). In it, Foucault introduces the image of the Panopticon: a series of architectural designs by English reformer Jeremy Bentham for controlling the behaviour of their occupants through the suggestion that they were being observed (Galič, Timan and Koops 2016). The Panopticon was at once an actual historical phenomenon as well as a theory for the coercive effects that could be exerted over human beings through practices of unequal exposure, and it was in the latter sense that the image shaped the field of surveillance studies. The ‘panoptic’ paradigm of the 1980s and 90s theorised how new technologies were reinscribing old asymmetrical relationships between observer and observed, while a subsequent ‘post-panoptic’ paradigm (Deleuze 1992) explored how surveillance has become multi-directional and mobile, with overlapping state and capitalist incentives (Bauman and Lyon 2013; Zuboff 2019).

‘Surveillance’ is a modern word that has been increasingly used in English from the nineteenth century onwards. An anglicisation of the French surveiller—to watch (veiller) over (sur)—both the English and the French derive from the Latin verb vigilare, to keep watch. As a concept, surveillance has been defined many times with different connotations in different scholarly traditions. A particularly influential definition describes surveillance as ‘the focused, systematic and routine attention to personal details for the purposes of influence, management, protection or direction’ (Lyon 2007, 14). In anthropology, however, a focus on the ‘personal’ is problematised by how the very concept of the person varies historically and culturally (Carrithers 1985; Strathern 2018). Therefore, in anthropology, another definition of surveillance is worth pursuing: watching over through human and/or non-human technologies for an intended purpose. This lays more emphasis on an understanding of ‘technology’ which, following the French tradition in which Michel Foucault and Gilles Deleuze were operating (Behrent 2013), derives from the French techniques. Conceived broadly as a set of practices, techniques include material culture but are not limited to it. These encompass social activities like guarding, spying, or undercover policing, as well as the use of analogue or digital devices to collect, store, or process information.

Anthropology has been a relative latecomer to the study of surveillance. This may be partly because it entails naming a relationship as surveillance, while anthropologists may prioritise other definitions. In this growing body of work, however, anthropologists have analysed surveillance as a technology of state security, policing, and capitalist accumulation. They have also shown that within these instantiations lie possibilities for political reciprocity and reversal, for dynamics of care, and for a reappropriation of technology (known as ‘function creep’) from above and beneath. As a way of making visible, surveillance is also in continual conversation with non-surveillance: whether through invisibility, anonymity, or concealment. In general, an emerging anthropology of surveillance considers the unfolding of relationships among and between ‘surveillors’ and ‘surveillands’ as a situated encounter. This encounter draws on historically constituted categories, relationships, and moral orders, in which it finds—or fails to find—its own legitimacy. As the proliferation of computing continues to enable the expansion of surveillance, anthropology invites attention to the conditions of visibility, and the purposes to which rendering subjects visible through technology is put.

Security, policing, and morality

A conversation across the social sciences began to take shape in the 1980s and 90s in response to the growing use of electronic monitoring in Europe and North America (Bogard 1996; Gandy 1993; Haggerty and Ericson 2000; Lyon 1994; Marx 1988; Norris and Armstrong 1999; Whitaker 1999). Scholars in the emerging field of surveillance studies were concerned with how new forms of information-gathering were transforming existing social institutions, particularly the police. Anthropologists entered this field from the side sometime later by way of a burgeoning interest in security (Holbraad and Pedersen 2013; Goldstein 2010; Maguire, Frois and Zurawski 2014; Maguire and Low 2019).

Seen broadly as the promise of protection against some real or imagined existential threat, surveillance has been observed as an outcome of wider dynamics of securitisation that have intensified since the events of 9/11. In European airports, for example, increasing counter-terrorism measures have entailed new intersections between human and machine surveillance (Maguire, Frois and Zurawski 2014). Assessing the threat of would-be passengers, machine-screening of physiological clues operates alongside the ‘skilled vision’ of security personnel—an intuitive technique gained through experience (Grasseni 2007, cited in Maguire, Frois and Zurawski 2014, 127). The surveillance that is justified by a logic of security can be prone to a function creep that goes well beyond its overt purpose (Frois 2019; Maguire 2009). In Egyptian-ruled Gaza between 1948-67, police surveillance served not only to protect the Palestinian population from threat, but also to enforce its own standards of propriety in gender relations, or to inhibit residents from joining dissident organisations (Feldman 2015).

In the context of security, surveillance is often intended to produce effects on the affective and mental life of the surveilled. Foucault emphasised the capacity of surveillance to render a self-regulated conformity to established rules, a phenomenon now referred to by journalists and privacy activists as ‘chilling effects’. Yet self-regulation is one of a panoply of responses that the idea of being watched may yield. Among the most common is a generalised suspicion of others, bred by the uncertainty of whether one is really being watched or not, which can spiral into paranoia (Masco 2017; Verdery 2018). For instance, in left-wing radical activism, the potential for undercover police surveillance can produce distrust of fellow activists that can inhibit the development of solidarity (Krøijer 2015). Sometimes cause-and-effect happens in an inverse way, as when certain affects, particularly fear, are mobilised at scale by media producers to justify the need for more surveillance (Masco 2014; Massumi 2015). But not all experienced affects are negative, and, in some contexts, surveillance may indeed deliver the feeling of security that it promises (Feldman 2015).

As a modality of security and policing, surveillance enables control over a bounded space (Levin, Frohne and Weibel 2002; Frois 2013; Maguire and Low 2019). Often this is commensurate with the territoriality of the state, in which national borders become sites of heightened surveillance, historically through an alliance of sensory and documentary forms (Baĭburin 2021; Breckenridge and Szreter 2012), which are increasingly automated through cameras, scanners, and biometric databases (Breckenridge 2014; Boe and Mainsah 2021). Sometimes it is internal boundaries within states that matter. In predominantly Alevi working-class neighbourhoods in Turkey, spatial control is achieved through a mixture of identity checks and interrogations at entrances, alongside the perambulation of armoured vehicles and undercover police inside the neighbourhood (Yonucu 2022). Here, surveillance becomes a tool of spatial isolation to keep outsiders out and residents in. As surveillance becomes increasingly digitalised, the question arises over whether its traditional production of spatial enclosure is substituted for a diffuse ‘digital enclosure’ (Andrejevic 2007), where access is mediated through data stored in distributed drives. In the Xinjiang province of China, interoperability between facial recognition systems at security checkpoints with other forms of data collection segregates speed and access to space in real time, as Han residents move frictionlessly while Uyghur residents may be detained and diverted (Byler 2021). Yet even in the digital enclosure the question of spatiality never completely disappears.

Surveillance may be less a matter of observation than of ‘sorting’ populations (Gandy 1993; Bowker and Star 1999). In the context of security and policing, though the effects may be experienced individually, it may not be specific people but rather categories of people who are placed under suspicion. Among CCTV operatives in Britain in the 1990s and 2000s, subjects of interest frequently fell into raced, gendered, classed, aged, and other demographic categories (Goold 2004; Norris and Armstrong 1999). In Kenya, China, or the US, falling into the category of ‘Muslim’ may be sufficient to constitute a police suspect (Al-Bulushi 2021; Ali 2018; Byler 2021). This association between surveillance and sorting is deeply rooted in the colonial past and is carried into the present through digital media (Jefferson 2020; Udupa and Dattatreyan 2023). The institution of the census across the former British Empire is a case in point (Breckenridge 2014; S. Browne 2015; Rao and Nair 2019). Processes of registering and categorising were normally linked to forms of identification that determined the ambit of a person’s movement. Among these was the slave pass of eighteenth- and nineteenth-century America, which combined with differently mediated forms of surveillance to racialise certain bodies and render them legible as property (S. Browne 2015). These categories do not necessarily fall, however, along religious or racial lines. Anthropologists themselves have fallen into categories of suspicion throughout the discipline’s history (Sökefeld and Strasser 2016): whether as communists in the US (Price 2004), or as foreign agents in the former Socialist states (Sampson 2022; Verdery 2012, 2018).

Although the surveillance performed by human and machine agents of the state continually seeks to solve the problem of large datasets by classification and sorting (Bowker and Star 1999), there is normally a much messier and more complex picture that exists on the ground or behind the scenes of any state surveillance project (Frois 2013; Jacobsen and Rao 2018). On the ‘friendly’ border between India and Bangladesh, curious political reversals occur between the Indian border soldiers, lonely and far from home, and the women and men seeking to carry contraband across the border. While the military officers enact the authority of the state’s surveilling gaze, they are also subject to a ‘counter-gaze’ by these travellers, scanning for vulnerabilities or openness to illicit transactions (Ghosh 2019, 447). Not only might the gaze be met and even directed by a possible counter-gaze, but the act of being surveilled by the state may in some contexts be a conduit through which the state becomes aware of political grievances and acts on them. This happened routinely in Egyptian-ruled Gaza, when grassroots complaints about the lack of currency in circulation led to behind-the-scenes instructions for banks to produce more (Feldman 2015) .

This leads to an aspect of surveillance that anthropology is well placed to address: namely, the ways in which monitoring technologies are introduced within moral discourses essential to their appropriation and acceptance. When video surveillance was installed in public areas in Portugal, it was driven by an apparent need to modernise the country to become more like its northern European counterparts (Frois 2013). In this discourse, surveillance becomes commensurate with development, an association that can be witnessed more widely. The most prominent example of this is India’s Aadhaar system, the largest biometric identity project in human history (Nair 2021; Rao and Nair 2019). Fingerprints, iris scans, and other physiological information are collected alongside demographic details, which are matched to the holy grail of any mass surveillance project: the unique identifier (Clarke 1988), in this case a twelve-digit number. From its inception, Aadhaar has been rationalised through its provision of multiple goods (access to welfare, financial inclusion, digital literacy, and accessibility among others) and its elimination of undesirable phenomena such as poverty, corruption, and fraud. Yet for critics, Aadhaar constitutes the infrastructure for the biggest surveillance apparatus ever implemented. This antithesis touches on a paradox of modernity itself, that the history of surveillance is entwined with the history of the state and its capacity to institutionalise care on a very large scale (Dandeker 1990; Higgs 2003). In the UK, for example, the foundation of the National Health Service (NHS) was also the foundation of an information apparatus that could serve other ends (Rule 1973). The question, for any citizen, is that of reward for their enforced visibility. Are Indian citizens really being compensated by Aadhaar, or is this the final frontier in the state’s appropriation of the citizen’s body (Kapila 2022)?

Health surveillance and care

Surveillance is often justified through the interests of the common good, such as safeguarding those deemed to be vulnerable, caring for patients, or stopping the spread of disease. While health monitoring, in this logic, may be enacted as a ‘caring’ practice (Mol 2008), it now increasingly involves the collection of data stored on servers that are not always known to those who are being monitored (Sandvik 2020; Lyon 2021). Health surveillance is commonly defined as the systemic collection, analysis, and dissemination of health data for the implementation and evaluation of public health action (Choi 2012).^[1] In more general terms, it can be understood as the practice of watching over health, from the perceived ‘health’ of populations and individuals to that of communities and nations.

Recently, the Covid-19 pandemic has reinvigorated health surveillance as a matter of political and public concern (Kim and Chung 2021). Political responses to the pandemic were shaped by a range of moral rationalities that introduced and justified new modes of public health surveillance (Lyon 2021). Public health interventions across the world sought to control and mitigate the outbreak, such as by responsibilising citizens to act in the interest of the state and to install contact tracing apps to curb infection rates. In places such as Germany and the UK, state-sponsored contact tracing apps received media criticism due to privacy concerns, as well as technical concerns over their ability to act as a public health measure (Laptander and Vitebsky 2021).

Monitoring populations for the purpose of controlling and caring for citizens is not a new phenomenon. It was partly through shifting modes of governance in Europe from the eighteenth and nineteenth centuries onwards, with the monitoring of populations and publics, that practices of health surveillance took shape. Health surveillance has therefore historically played a key role in constituting not only visible, measurable, and governable spaces, but also governable persons willing to self-monitor in the name of their own health (Foucault 1973; Rose 1989). In many parts of the world, the provision of public health services, including their administration and governance, have become increasingly digitalised through practices of ‘datafication’ in which the mass collection of personal health data informs interventions (Hoeyer, Bauer and Pickersgill 2019; Ruckenstein and Schüll 2017). Surveillance, in this vein, unfolds through a range of monitoring practices that claim to sustain human life in different ways. Drawing on Foucault’s notion of biopolitics, health surveillance can thus be seen to form part of a ‘politics of life itself’ (Rose 2006), in which bodies and minds have become ‘vital’ objects of observation and intervention. Such practices rely on people’s capacity and willingness to engage in forms of everyday self-monitoring in the service of care (Weiner et al. 2020; Kent, Lupton and Zeena 2020).

In surveillance studies, care and control have been described as two entangled interests driving practices of monitoring. Watching over children, for instance, may be intended with their protection in mind but can also be motivated by other intentions, such as direction and control (Lyon 2003; Widmer and Albrechtslund 2021). In many contexts, people actively participate in the monitoring of their bodies but in ways that are not always known to them. In rural India, for example, the ‘Khushi baby necklace’, a tracking device presented as a piece of jewellery, was trialled as a digital tool of recording and storing immunisation records (Sandvik 2020). More recently, it was also used to collect other health data such as HIV medication records. Developers attempted to make it locally ‘appropriate’, designing it with a black thread to ward off evil spirits, showing how such technologies are incorporated within cosmological systems (Sandvik 2020). While the necklace can be seen as ‘doing good’—as a caring technology—digital health data also has the potential to be exploited and commodified without people’s consent or knowledge in the service of corporate interests.

Dynamics of care and control were simultaneously at work in the 1950s, when a team of doctors brought an antibiotic to the Navajo population in Arizona to treat tuberculosis (Jones 2001). When patients failed to take their medications, healthcare professionals regarded them as non-compliant, and responded by implementing powerful technologies of surveillance: random tests were performed, such as urine testing or radioactive pill clocks^[2], often without patients being informed about their purposes. These interventions introduced distrust into doctor-patient relationships and many feared participating as the urine sample testing could potentially expose their ceremonial use of the peyote plant, which had been prohibited by the tribal council. In this case, medical surveillance as a tool of control was operating within existing political structures of colonisation and racialisation, and it is unclear what opportunities the Navajo had, if any, to resist these medical interventions.

Health technologies are sometimes welcomed and appropriated in new ways beyond the way they were intended (Stadler 2021). Digital health technologies of surveillance, such as the MERM (‘medication event reminder monitoring’) device, have been introduced to persuade and remind ‘non-compliant’ tuberculosis or HIV patients to take their medications. Some patients referred to the device as ‘the box’, whereas others gave it affectionate nicknames such as ‘my child’, which one user explained was due to the box containing pills that would give her access to a healthy life. Some stored their boxes safely for this reason, or wore clothes that would match the box, hence trying to transform it from an adherence-monitoring device to a person-entity that represented hope.

Health surveillance technologies have often been used as mechanisms of governance, but it is important to emphasise that people might actively use monitoring technologies in the name of improving their own health or in the interest of looking after others. The past two decades have seen an intensive proliferation of, and investment in, digital monitoring technologies that claim to improve our physical and mental health, as well as offer care and support for others (Lupton 2016; Neff and Nafus 2016; Ajana, Braga and Guidi 2022). For example, physical rehabilitation apps can monitor exercises done at home (Schwennesen 2019), and smartphone apps and ‘wearables’ can be used to track children’s locations (Widmer and Albrechtslund 2021). Self-monitoring in the context of health can therefore foreground more intimate and subtler aspects of monitoring effected by everyday acts of self-surveillance. Wearable self-tracking technologies such as Fitbit and Apple Watch enable people to monitor a range of activities and functions associated with their bodies and minds. These practices might include tracking exercise and steps (Brüggen and Schober 2020), menstrual cycles (Ford, De Togni and Miller 2021), heart rates, and sleeping patterns (Hardey 2022). Digital wearables also increasingly allow people to report on, quantify, and monitor various ‘mental and emotional’ experiences and sensations, from stress and anxiety to mindful moments and other perceived states of well-being (Gregory and Bowker 2016; Schüll 2016; Davies 2017; Minozzo 2022).

Self-monitoring emerges here as a way of caring for, and knowing about, bodies, such as in the management and understanding of pain, affects, and medical uncertainties. For example, health monitoring technologies can figure as practices of self-knowledge in the hands of menstruating people, as an ethnography of period tracking apps in the context of the FemTech^[3] wave in the US describes (Ford et al 2021). Yet these health tracking apps can also be situated and critiqued within a political frame of ‘surveillance capitalism’ (Zuboff 2019) that raises concerns about the ethics of data sharing and its potentially discriminatory ends, such as limited access to healthcare services (e.g., abortion). For example, one user in favour of menstrual tracking but critical of the harvesting of personal data describes her circumstance as a ‘no-exit situation’ wherein one just tries to ‘limit the damage’ of self-tracking in the face of corporate profit-making (Ford, De Togni and Miller 2021, 59). While users are ‘empowered within conditions not of their choosing’ (Ford, De Togni and Miller 2021, 58), Andrea Ford and her colleagues argue that self-monitoring nevertheless offers a way for women to recognise, and in turn exercise, a mode of control over affective and bodily experiences that have been historically, and are still routinely, neglected in healthcare systems.

Within circumstances of what is now commonly termed ‘digital health’, the use of self-monitoring technology constitutes the very body-self it assumes: subjects that are capable of self-checking and self-reporting (Bruun 2023). The notion of the reflexive, measurable, and quantifiable self is in many ways built into the design and operation of health trackers, which in turn shapes users’ experiential realities of what it means to be ‘healthy’, ‘fit’, and ‘well’. Digital self-monitoring can thus be seen to constitute new caring and corporeal capacities that can be extended to self and others (see e.g. Davies 2017; Bergroth 2019; Kent 2023). Yet these new modes of monitoring demand that we constantly ‘watch our selves’ in ways that construe people as objects of self-observation and self-inspection in pursuit of particular health goods.

Monitoring labour

Labour has always gone hand-in-hand with some form of surveillance—whether understood as such, or in the more benign language of monitoring or supervision. Because employers have legitimate goods to protect, for instance regulatory compliance or productivity, surveillance is often accepted by employees as a ‘taken-for-granted’ element of working life (Ball 2010, 19). How this takes place, however, varies greatly according to historical, regional, and technological conditions. In anthropological terms, there are certain analytical points to consider. The first is whether the surveillance in question is happening through social relationships or is construed as abstract from relationships. Both can occur through old and new forms of mediation. On the former side, overseers, foremen, drivers, or other figures to monitor or coerce workers extend deep into the history of agricultural and industrial economies (R.M. Browne 2024; Thompson 1967), and persist in the present through forms of in-person or camera-enabled visual supervision. On the latter side, technologies of quantification developed in the early twentieth century through Frederick Taylor’s principles of ‘scientific management’ (Taylor [1911] 1993), which incentivised workers to manage themselves, and are evolving in some contexts into what is known as ‘algorithmic management’. In addition, because some form of surveillance is an accepted part of working life, it plays a more-than-usual role in constituting working life, communicating to workers—like a ‘paralanguage’ (Ball 2010, 97)—about what tasks are valued. Lastly, because the workplace is a peculiarly purposeful setting, the increase of digital surveillance in recent years appears to be transforming these domains at the highest pace, as new configurations between work and non-working life are negotiated, new ethical norms around personal information tested, and new working identities made.

In examining the nature of monitoring at work, anthropologists have looked towards their own institutions. Higher education reforms across the world in the 1980s and 90s transformed monitoring in the academy, as part of a wider shift in public institutions more generally, towards external auditing (Born 2004; Harper 1998; Strathern 2000b). Financial concepts were imported to assess academics and their work in terms of ‘outputs’, ‘impact’, and ‘efficiency’—using much of the language developed by Taylor—in ways that supplanted older social and qualitative forms of evaluation. While the new regime of ‘audit culture’ was coercive to the extent that there was no opt-out (Strathern 2000a), and academics became compelled to monitor themselves and each other in quantifiable, ends-orientated, and often labour-intensive ways, it also became constitutive, to some extent, of academic work and workers. Departments and universities were collectivised as subjects of surveillance into the bodies in which they were assessed; meanwhile, some academics learned to refer to themselves using the terminology of the ‘h-index’, the ‘i-index’, or the numerical values of audit criteria, as these became avenues for promotion or job security (Shore and Wright 2000; Lazar 2022). As a form of bureaucratic surveillance, audit or ‘metric culture’ (Ajana 2018) functions like bureaucracy more generally, effacing its own political basis (Ferguson 1994; see also Bear and Mathur 2015). One of the ways in which anthropologists have critiqued these developments is by reinscribing this politics through acts of extra-institutional writing. In this, they dovetail with a wider phenomenon in workplace surveillance, when workers turn to anonymous blogs, forums, Facebook, or WhatsApp groups beyond the surveilled domain, to forge critical identities and find workarounds (Ball 2010; Lazar 2022).

Surveillance scholars have observed the gendering of surveillance relations in some labour contexts, as women perform before a mediated male gaze (Dubrofsky and Magnet 2015; Meulen and Heynen 2016). Anthropologists examining care work, which is disproportionately gendered female, have encountered the increasing use of surveillance technologies (Johnson 2015; Glaser 2021). Here, gender asymmetries frequently intersect with class and ethnic asymmetries, dynamics all being remediated through location tracking and CCTV, among others. In Hong Kong, for example, migrant Filipino women are employed by high- to middle-income families to care for children and perform domestic chores, labour that is increasingly scrutinised through so-called ‘nanny cams’ (Johnson et al 2020). Because of the informal nature of much of this work, the use of surveillance can also be less formal, as workers are not told in advance that they would be filmed, nor where and for how long the data would be stored. In some cases, they report discovering hidden cameras in the process of cleaning, or being called to task for activities that could only have been observed remotely—only realising in hindsight their exposure to a male employer. To avoid these gazes, they might respond tactically by ‘accidentally’ dropping their cleaning cloths on the lens or spending more time in unmonitored areas like the bathroom. In care settings, the presence of surveillance technologies can interrupt or even substitute for care itself and thus jeopardise important wells of trust. On the other hand, they may also manufacture it, as hours of labour that would have otherwise gone unrecorded are captured on camera for their employer to see.

While surveillance happens at work, it can itself be a form of labour and subject to the imperatives that shape labour: namely, a drive towards automation and outsourcing to reduce costs. It is in this context that labour monitoring is increasingly taking place through enhanced forms of datafication and algorithmic management. This can be understood as an extension of scientific management, to the extent that algorithmic management involves a calculation of time and resources needed for tasks (Lazar 2022), such as picking up a box in an Amazon warehouse or delivering meals across a city. However, this form of monitoring also greatly reduces the presence of employed overseers. In these new constellations, surveillance becomes ‘multimodal’, assembling mathematical calculations, customer ratings and reviews, and a small number of human dispatchers or ‘rider captains’ who play a supporting role in the work of overseeing (Newlands 2021, 725). Though these new relations are sometimes represented as replacing ‘bosses’ with algorithms, anthropologically it is more accurate to think of these as ‘human-in-the-loop’ systems that depend much more heavily on computing (Newlands 2021, 724). If a food delivery driver does not have access to a functioning smartphone, not only are they unsupervised, but they cannot work at all (Duus, Bruun and Dalsgård 2023). With these techno-orientated systems arrive new technical vulnerabilities, as well as new possibilities for worker reappropriation or resistance. Some Deliveroo drivers in Brussels, for example, found ways to ‘hack’ the employee app to circumvent the performance score system (Duus, Bruun and Dalsgård 2023), while truckers in the US have applied a number of methods to ‘beat the box’ of newly installed Electronic Logging Devices, for instance by covering GPS masts with tinfoil or shattering their interiors with a rubber hammer (Levy 2022). Despite the social and legal risks that emerge from the rise of ‘smart’ surveillance in workplaces, because of the role of capital incentives this area looks set to expand, particularly with the growth of generative AI (Ball 2022; Duke 2023).

Participatory surveillance

Social vigilance, understood in the broadest sense, has long been a subject of anthropological inquiry. During the first half of the twentieth century, some anthropologists construed ritual action as a matter of ‘watching over others’ (Bateson [1936] 1958; Evans-Pritchard [1937] 1993; Leach [1964] 1970). For example, the Azande of central Africa conducted divination ceremonies to ‘see’ and expose suspected witches (Evans-Pritchard [1937] 1993). Similarly, ‘bewitchment talk’ in the French Bocage, or rural Normandy, included secret malicious spells or even the transfer of ‘power’ through gazes, causing serious misfortune in the lives of those affected (Favret-Saada 1980). Consequently, bewitchment in the Bocage sustained a pervasive sense of fear and suspicion, which intensified and at times escalated the constant monitoring of social rivalries in the village.

Neighbours, spouses, kinsfolk, and peers all frequently and regularly engage in vigilant behaviour as part of ordinary life. For example, self-presentation in different social contexts is often based on the monitoring of others’ behaviour and the ‘alignment’ of one’s own behaviour with the expectations of others (Goffman [1963] 1990). Similarly, the spread of gossip and rumour in an English council estate was used to limit the level of prestige that people could gain in the community (Gluckman 1963). Yet, gossip can also serve to build prestige. Some women in the Polynesian Nukulaelae Atoll, for example, may use gossip to reinstate broken social hierarchies, resist negative stigma, and negotiate power imbalances (Besnier 2019). In all these cases, mundane monitoring is a ubiquitous form of social control involving the relational negotiation of reputation and respectability.

The advent of social media has taken these monitorial negotiations into new territories. Practices of ‘lateral surveillance’ (Andrejevic 2004) are an integral aspect of peer-to-peer monitoring in online social worlds. Lateral surveillance can be imagined as surveillance that is enacted in many directions simultaneously, including ‘sideways’, as opposed to the linear ‘top-down’ monitoring famously associated with the Panopticon.^[4] Contrarily, lateral monitoring sometimes produces an empowering process of identity construction, of which surveillance is an important positive element (Koskela 2018). Since the ability to ‘follow’ others is intrinsic to the exchange of information on social platforms, users actively take part in practices of mutual surveillance (Albrechtslund and Lauritsen 2013). On Facebook, Twitter, WhatsApp, or TikTok, for example, online users voluntarily enable others to monitor their accounts in different ways, including the ability to download and share their photos, locate them geographically, or track their whereabouts (Trottier 2013). While social media acquires distinctive characteristics in different social contexts, these forms of sharing and mutual exposure are basic communicational features that enable rather than restrict dialogue (Miller 2011; see also Widlok 2021). The term ‘participatory surveillance’ (Albrechtslund 2008) highlights the customary rather than coercive nature of such practices.

One important feature of participatory surveillance is its ‘synoptic’ nature: an inversion of Bentham’s Panopticon, the concept of the ‘synopticon’ refers to surveillance of the few by the many (Mathiesen 1997). Unlike the linear, demarcated, and clearly defined form of control produced in panoptic realities, power in synoptic realities is dispersed across society in multiple directions.^[5] One of the consequences of a synoptic reality is that individuals can profit from the monitoring of their own lives. At the end of the 1990s, ‘everyday surveillance’ became linked to new flows of capital in the emergent online market economy so that, for example, a college student in the US could instal a webcam in her apartment and charge subscription fees from internet users for viewing access (Staples 2013). Over the past two decades, ‘web-camming’ has become a lucrative business in the online sex industry (Van Doorn and Velthuis 2018). While such sites as Only Fans operate under little or no ethical regulation, they continue to thrive (Stegeman 2021). Rather than initiating traditional ‘top-down’ publicity campaigns, which target vast numbers of potential customers through mass visibility, commercial companies increasingly hire social media influencers, YouTubers, or vloggers to recommend products and services to their followers (Lange 2019). In this process, the companies behind these products also gain access to the followers’ data (see Clarke 1988 on ‘dataveillance’), thus complicating the notion of synoptic surveillance as purely lateral.

Participatory surveillance does, however, include a ‘vertical’ dimension, in the sense that people can monitor the authorities ‘bottom up’. For example, civil society ‘watchdogs’, non-military use of Open-Source Intelligence (OSINT) techniques (wherein civil society actors identify crimes or human rights abuses [see Trottier 2015]), and smartphone apps that enable drivers to detect speeding cameras, all invert the ‘top-down’ monitoring used by those in power. The term ‘sousveillance’ (from French sous, ‘from below’) characterises this form of monitoring (Mann, Nolan and Wellman 2003). While surveillance may convey the idea of the omnipresent, overarching gaze, sousveillance indicates grassroots resistance to state or corporate monitoring powers by which people attempt to defy and deter potential privacy infringements (Garrido 2015). Sousveillance is not antithetical to synoptic surveillance, however. CCTV gadgets, recording devise, and mobile tracking applications can all be used ‘laterally’ to document or monitor peers at work, at home, or in public spaces (Lyon 2007).

Both in its synoptic (lateral) and sousveillant (vertical) manifestations, participatory surveillance now seems commonplace. Depending on the mundane settings in which it is being implemented, this sense of immanent and constant surveillance could blur the distinctions between those who monitor and the subjects of monitoring. In some digital contexts, every person is turned into an observer who must assume that they are simultaneously always being observed. Participatory surveillance thereby prompts fresh discussions about power and sovereignty, visibility and opacity, as well as the role of individual and collective agency, in a world characterised by ubiquitous surveillance.

Non-surveillance

Any anthropology of surveillance must reckon with its inverse and counterpart: non-surveillance. Non-surveillance can be understood as the broad spectrum of individual and collective activities that seek to resist or reimagine visibility before a surveilling authority. This frequently takes on a moral force. In a world where even deserts are technologically monitored, their sands mapped by satellites and scanned by drones, the idea of anonymity has become a value around which new kinds of collectives have gathered (Anon Collective 2021; Coleman 2014; Comité invisible 2009). One of the most renown is the Anonymous movement, in which participants could be identified by the wearing of homogenous Guy Fawkes masks. In Britain, becoming ‘Anonymous’ paradoxically became a strategy of hyper-visible protest, in order to oppose an invisibilisation by the state enacted through the discourse of austerity (Peacock n.d.). Indeed, any reflection on surveillance in relation to the state soon upends any straightforward moral binary between surveillance and non-surveillance (Birchall 2021). If making their citizenry legible is an essential part of the state’s capacity to enable them to live, its obverse allows the state to let others die (Mbembé and Meintjes 2003). Deliberate forms of ‘looking away’ from people on the margins (Kalir and Schendel 2017), such as migrants and refugees passing through or around national borders, permit these polities to absolve themselves of duties of care (Yarbakhsh 2018).

It can be argued that these dynamics of revelation and concealment lie at the very heart of the anthropological enterprise (Göpfert 2020). Ethnography, anthropology’s flagship method, involves forms of data collection through technologies that can, and have been, compared to surveillance. As she examines the eleven-volume file collected on her by the Romanian Security Services (Securitate) in the 1970s and 80s, Katharine Verdery asks herself, ‘When I read in the file that I “exploit people for informative purposes” can I deny that anthropologists often do just that as Securitate officers do? Isn’t this part of the critique of my discipline that likens it to a colonial practice?’ (2018, 18). These existential doubts about anthropology are important to address^[6] (cf. Boas [1919] 2005; Price 2016), and one response is to return to our opening statements: that what matters are the conditions and purposes in and for which human subjects become visible through ethnography. In the 1930s, Bronislaw Malinowski advocated for the creation of a ‘nation-wide surveillance network’ through forms of mass ethnographic observation (1938), which would address the ills of society. Similarly, for other anthropologists, refusing to collect or include information that could serve structures of domination becomes a political act (Price 2011; Simpson 2014; Yonucu 2022). The questions that anthropologists often ask themselves are those that must also be asked of surveillance: how are human beings becoming visible through monitoring technologies, and why?

Conclusion

The anthropology of surveillance is a relatively new area of inquiry that looks set to expand as relations that can be named as surveillance do. Anthropology has the potential to demonstrate the social and cultural complexity of these relationships as historically constituted ways of seeing interact with new technologies. While public discourses may continue to express alarm at the growth of ‘Orwellian’ societies, it is worth remembering that 1984 was written partly in protest at new forms of identification in Britain that came to underpin the NHS (Higgs 2003). Anthropology shows us that it is the social projects around monitoring, whether large or small, that define what the qualities of these relationships are.

Acknowledgements

The research on which this article draws was funded by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement 947867).

Note on contributors

Vita Peacock is an anthropologist in the Department of Digital Humanities at King’s College London and PI on the ERC project: Surveillance and Moral Community: Anthropologies of Monitoring in Germany and Britain (SAMCOM) (2021 – 2025). She is an affiliate member of the Minderoo Centre for Technology and Democracy at the University of Cambridge. https://orcid.org/0000-0001-5645-3242

Vita Peacock, Department of Digital Humanities, King’s College London, Strand, London WC2R 2LS, United Kingdom. vita.peacock@kcl.ac.uk

Mikkel Kenni Bruun is an anthropologist and research associate at King’s College London. He currently researches health surveillance and digital self-monitoring in Britain, as part of the SAMCOM project. He also teaches medical anthropology at Cambridge University. He is the co-editor of a forthcoming book titled Towards an anthropology of psychology. https://orcid.org/0000-0003-1814-294X

Mikkel Kenni Bruun, Department of Digital Humanities, King’s College London, Strand, London WC2R 2LS, United Kingdom. kenni.bruun@kcl.ac.uk

Claire Elisabeth Dungey is an anthropologist and research associate at King’s College London and currently researches the relationship between surveillance, care and family life in Germany, as part of the SAMCOM project. Her research interests cover the anthropology of childhood and education, mobility and future aspirations. http://orcid.org/0000-0003-1432-9096

Claire Elisabeth Dungey, Department of Digital Humanities, King’s College London, Strand, London WC2R 2LS, United Kingdom. claire.dungey@kcl.ac.uk. Claire is also honorary fellow at Durham University: claire.e.dungey@durham.ac.uk

Matan Shapiro is an anthropologist currently working as a research associate in the Department of Digital Humanities at King’s College London, as part of the SAMCOM project. He studies how the practice of Open-Source Intelligence (OSINT) and related forms of monitoring help shape new online spaces of moral consent. https://orcid.org/0000-0003-2655-7467

Matan Shapiro, Department of Digital Humanities, King’s College London, Strand, London WC2R 2LS, United Kingdom. matan.shapiro@kcl.ac.uk

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[1] The World Health Organization (WHO) defines public health surveillance as ‘the continuous, systematic collection, analysis and interpretation of health-related data.’ World Health Organization. 2023. “Surveillance.” https://www.who.int/emergencies/surveillance. Accessed 23 March 2023.

[2] A radioactive pill clock was a cylindrical block drilled with a number of holes that could hold a daily supply of pills. The pill clock had a cover that allowed the removal of only one set of pills at a time. A patient would rotate the device and remove the daily pills. Yet it was unknown to the patient that the device had a small piece of photographic film and a radioactive emitter embedded in plastic that could determine time intervals and hence a patient’s irregularity.

[3] FemTech, short for ‘female [health] technology’, is a fast-growing women’s health movement in the digital health industry and beyond. The term was coined in 2016 by the Danish entrepreneur Ida Tin, co-founder of the period-tracking app, ‘Clue’.

[4] The term ‘lateral’ should not be taken literally as 'sideways'. Instead, the idea of ‘lateral surveillance’ involves looking around in all directions and being able to survey peers as much as subordinates or superiors. Within this perspective, which is endemic to any form of participatory surveillance, there is little qualified difference between lateral, synoptic and sous-veillance, all of which express the same fluidity as a response to the relative rigidity of Foucault's analysis.

[5] Thomas Mathiesen attributes this to the emergent construction of new moral sensibilities involving three types of synoptic surveillance techniques: 1) the ability to see everything (‘syn-opticism’); 2) the ability to make everything visible (‘syn-omorphism’); and 3) the ability to communicate information (‘syn-noetics’). When these elements are combined, he argued, power can be produced, diffused, and obtained in unexpected ways.

[6] Price, David. 2000. “Anthropologists as spies.” The Nation, November 2. https://www.thenation.com/article/world/anthropologists-spies/

Editor:

Hanna Nieber

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

Natashe Lemos Dekker

Leiden University

Initially published 12 Oct 2023

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

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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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

Intellectual disability

Rebecca Tishler — Tue, 14 Feb 2023 08:18:16 +0000

The Splash Jockey SwimABLE programme in Hong Kong enables children with special needs to have fun in the water. Photo: The Hong Kong Jockey Club

Patrick McKearney Tyler Zoanni

Initially published 14 Feb 2023

http://doi.org/10.29164/22intellectualdisability

Abstract:

‘Intellectual disability’ is a widely used psychiatric category that conceives of certain minds as impaired in their development. By approaching intellectual disability from a cross-cultural perspective, anthropology demonstrates how the condition is culturally variable. It shows, in particular, how intellectual disability is produced by different social expectations of ‘normal’ mental development and different ways of responding to adults who do not meet those expectations. Anthropology thus offers a way to analyse this seemingly biological deviation from a universal path of mental development as a growing lack of fit between culturally specific expectations for maturation and a person’s own life course through society. Anthropology also provides innovative research methods that enable a closer understanding of the experiences, lives, and self-narrations of people categorised as having intellectual disabilities themselves—in particular, demonstrating how they develop and exercise agency in spite of considerable constraints. In this way, anthropology gives us a deeper insight into how people become and remain classified as having an intellectual disability, what it is like to live under such categorisations, as well as what such classifications leave out about them as people.

Introduction

This entry does not discuss all potential forms of disability that might relate to cognition (i.e. dementia, autism, brain injury, or mental illness) but focuses on the specific clinical category of ‘intellectual disability’ that was originally formulated within Euro-American psychiatry (McKearney & Zoanni 2018)^{^[1]}. The entry explores how work on the cross-cultural variation of this condition complements biomedical and professional understandings of it, filling in the blind spots of those perspectives and challenging their assumptions.

The widespread use of ‘intellectual disability’ in many contemporary states—in biomedicine, psychology, welfare distribution, and legal proceedings—naturalises a distinctive way of categorising certain minds as impaired and gives the impression that people diagnosed as intellectually disabled ‘have’ a biological condition (Levinson 2010; Altermark 2018). The term has been most precisely defined within psychiatry, where it can refer both to the cause and to the outcome of mental impairment. The former use gives the misleading impression that people permanently ‘have’ this condition in the way they might have a genetic condition or temporarily have an infectious disease. Contemporary psychiatry more precisely defines intellectual disability as a state, the aetiologies of which are diverse and often unknown (Mackenzie 2010). The prognosis is not always certain either, making it possible for a person to cease to be intellectually disabled in the future. For this reason, it is preferable to use the term ‘intellectual disability’ to refer to the outcome of mental impairment.

The most recent edition of the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders (DSM-V) recommends someone be diagnosed as having an intellectual disability if they: 1) have deficits in intellectual functions that can be measured by psychometric tests; 2) have deficits in adaptive functioning that result in a failure to meet developmental and sociocultural standards for personal independence and social responsibility; and 3) if these deficits began during the developmental period of life—i.e. before the age of eighteen rather than, for example, as the result of a later accident (APA, 2013).

Anthropological work demonstrates that there is significant variation in the ‘social-cultural standards for personal independence and social responsibility’ which the DSM-V refers to and how they expect people to develop the mental capacity to reach them. These standards are especially likely to be different beyond the professional and institutional contexts in which the category of intellectual disability originated and is used, by professionals and lay-people. What people must ‘adapt’ to, furthermore, varies depending on how people in a society communicate, organise relationships, and manage to live independently—if, indeed, living independently is required at all.

So the DSM’s seemingly straightforward definition of intellectual disability, in fact, raises a series of empirical questions that are not sufficiently answered by medical and psychological science. What kind of diversity exists among those who end up categorised as intellectually disabled? What are the different causes of this categorisation, including those that are non-biological? Is it coherent to demarcate intellectual disability as separate from physical disability, mental illness, or a putative ‘normal’ cognitive functioning? If what is considered ‘normal’ cognitive functioning and development varies socially and culturally, is intellectual disability and its development also variable?

Anthropology has yet to fully answer such questions. While there is a robust body of anthropological literature on cross-cultural variation within mental health, and an emerging one on physical disability and sensory conditions like Blindness and Deafness, there is not such an elaborated tradition in relation to intellectual disability (Edgerton 1970). This dearth echoes a wider social and scholarly marginalisation of intellectual disability (Kulick and Rydstöm 2015). The result is that anthropology has not yet fully developed a cross-cultural conversation about intellectual disability that would enrich and challenge a psychiatric understanding of it.

One reason for this neglect is internal to anthropology as a science of social and cultural difference. Anthropologists work on the assumption that seemingly puzzling behaviours do not issue from a lack of intelligence, but rather require deeper ethnographic understanding (Geertz 1975; Shore 2000). This premise of mental equality has enabled them to demonstrate the coherency, intelligence, and sophistication of different forms of life, and thus to undermine arguments about ‘natural’ differences in intellect between human groups (e.g. Evans-Pritchard 1976; Levi-Strauss 2021). But this same standpoint has unintentionally thwarted investigation into potential differences at the level of the mind itself (McKearney and Zoanni 2018; McKearney and Zogas 2021).

Overcoming this trend, there is a small but important strand of anthropological work on intellectual disability that began in the latter half of the twentieth century. The first major engagement with the subject in the discipline was a collaborative and longitudinal research project in California, which remains the largest conducted to date. An additional research tradition in North America and Europe emerges out of feminist concerns with reproduction, care, and dependence. A third body of literature we discuss includes arguments about how intellectual disability is socially produced and how studies from outside of Euro-America enhance our understanding of its cultural variation.

Anthropological work on intellectual disability reveals just how particular are the social and cultural conditions that support the psychiatric framing of intellectual disability. It also shows the limits of describing people’s lives solely or primarily in terms of this category, regardless of context and circumstance. Anthropology has innovated methodologically to get closer to the experiences, lives, and self-narrations of people themselves. This enables us to gain a fuller understanding of what it is like to live as someone classified as intellectually disabled, as well as what such classifications leave out about them as people. In doing so, anthropology contributes significant missing pieces to the puzzle of just how people become intellectually disabled, as well as how and why that might vary socially and culturally. Anthropology offers a way to analyse what psychiatry treats as a pathological deviation from a universal path of mental development as, instead, a growing lack of fit between culturally specific expectations for maturation and a person’s own particular life course through society.

Early studies and methodological innovation

Anthropology’s first engagement with intellectual disability emerged in the 1960s alongside other critical social scientific studies of the professional treatment of those classed as having mental conditions in medicine, psychology, social services, and charities within North Atlantic welfare states. Robert Edgerton’s monograph The cloak of competence (1967) presents extensive data on the lives of disabled people in urban California who had been discharged from a residential institution. Edgerton demonstrates the incredible efforts these people undertake to confront ‘the shattering stigma’ of being regarded as ‘retarded’ by working to conceal, through a ‘cloak of competence’, their difficulties navigating life outside of institutions (1967, 205). This, in turn, entails confronting the psychological scars of humiliation, loss, and fear resulting from their former confinement. It includes also finding ways to navigate the poverty they typically face. This often happens through constructing ad hoc relationships of support, including with friends and especially romantic partners. At the same time, however, many people in Edgerton’s study were forcibly sterilised and feel permanently and irrevocably undermined by their inability to have children.

Edgerton treats ‘mental retardation’ as not just a biological condition but also a social status that has stigmatising effects on people quite apart from their own mental capacities. His study also aims to ‘see people through their own eyes and to hear them through their own words’ by exploring their thoughts, actions, and feelings (Edgerton 1967, 6). The same approach characterises the subsequent works produced by the large research group Edgerton headed at the University of California, Los Angeles (UCLA). The team conducted a series of thorough and detailed longitudinal ethnographic studies by tracking many of Edgerton’s original cohort of informants, and others besides, across diverse settings and into their older years (see Edgerton 1984b; Edgerton and Gaston 1991).

L. L. Langness and Harold Levine’s Culture and retardation (1988a) is significant among this work for its systematic focus on life history as a methodology for studying intellectual disability. It departs from standard parentally-focused life-histories that present a person with disabilities as ‘aspects of a man who might have been’ (Langness and Levine 1988b, 1-3). The book’s detailed portraits of the complexity of disabled people’s lives shows them to be protagonists with agency, individuality, and richness. It challenges the clinical reduction of disabled people to their mental impairments, and thus to ‘a single homogenous group best characterized as an I.Q. range’ (Langness and Levine 1988a, xiv).

This volume demonstrates how difficult it is for those with intellectual disabilities to access the contexts in which others learn social roles. It argues that they are, instead, actively socialised into ‘incompetence’. For instance, they are confined to atypical social contexts in which they cannot access the kinds of social learning through which others of a similar age and gender transition to adulthood (Langness and Turner 1988; Kernan, Hubbard and Kennan 1988; see also Mitchell-Kernan and Tucker 1984, 186). Acquired incompetence is even worse for those who have only ever lived in institutions:

Once one has lived as retarded, been systematically denied information about the everyday world, provided with false information, his or her chances for subsequent normal development are slim (Langness and Levine 1988a, xiii).

Demonstrating the effects of socialisation reveals how problematic it is to take a person’s capacities at a given moment as a read-out of their innate abilities. A long-term perspective on their development over the life course is required (Langness and Levine 1988b, 8).

This demonstrates the necessary role ethnography plays in looking beyond simple casual relationships between single factors in people’s lives and facile quantitative measures of ‘success’ for people with intellectual disabilities. Standard professional measurements of the causes and effects of disability on people’s lives are not only narrow but attempt to stabilise a picture that is constantly ‘in process’ (Edgerton 1984a, 2). Ethnography allows researchers to become embedded in the wider context of people’s lives, rather than operating in contrived experimental situations or clinical and psychometric assessments. Ethnographic research is essential if we are to avoid simplistic pictures of intellectual disability.

A subsequent tradition of ethnographic inquiry further developed new ways of ethnographically and analytically centring the lives, perspectives, and voices of intellectually disabled people themselves. One landmark study focused on two individuals in the US, Ed Murphy and Patty Burt, who had previously been labelled ‘retarded’ and institutionalised (Bogdan and Taylor 1982). The book relates several extensive and wide-ranging interviews in which Ed and Patty articulately and thoughtfully narrate how they moved through various kinds of institutions and independent-living arrangements over their life courses. This perspective challenges the professional and research perspectives that dominated understandings of ‘mental retardation’ at the time. Ed, for instance, remarks that to understand people like himself ‘you need experts’. ‘Experts,’ he goes on to say, ‘are people who have lived it’ (Bogdan and Taylor 1982, 30; see also Hartblay 2019). Indeed, Robert Bogdan and Steven Taylor are critical of the very category of ‘mental retardation’, which they take to be a construct that is not only scientifically vague but also has devastating effects on people’s lives.

Ed and Patty’s lives are, like Edgerton’s narratives, ‘stories of lost opportunity brought about by institutional confinement’ (Bogdan and Taylor 1982, 219). But the book also shows them as multidimensional human beings that are constantly exceeding their categorisation as cognitively incapable (Bogdan and Taylor 1982, 210-14). Bogdan and Taylor end with a strong concluding plea to abandon stigmatising labels and to ask what is wrong with society, rather than disabled people, by focusing on what can be done to make it more accommodating and, indeed, dignifying for these individuals (Bogdan and Taylor 1982, 224-5; see also 1992; Edgerton 1993, 228).

Michael Angrosino similarly sought ways to narrate the lives of people with intellectual disabilities in the US from their own perspective by asking, ‘what does it feel like to be mentally disabled and to make one’s way in the world with that condition?’ (1998, 8). Against commonplace aspirations to objectivity, he aims to facilitate people with intellectual disabilities telling their stories in their own ways (Angrosino 1994, 26). For example, he describes a bus trip with Vonnie Lee, a resident of a group home Angrosino was working at. He reads Lee’s seemingly incoherent and insignificant comments on the trip as a way of assembling and narrating significant emotions, values, places, and relationships. Angrosino treats the bus as a legitimate context in which to tell one’s life history. By accompanying Lee as he travels across the urban landscape, the memories incidentally evoked become a coherent form of narration—and it turns out there is nothing ‘disordered’ or trivial about what Lee says (Angrosino 1994, 26-7). In subsequent work, Angrosino (1998) goes further by writing ethnographically-based semi-fictional narratives. The characters are fictionalised composites of people he met volunteering at a nonprofit residential community for people diagnosed with an intellectual disability (1998, 25-6).

Angrosino contends that anthropology’s resourcefulness at deciphering seemingly ‘exotic’ symbols ought to be applied to understand forms of disabled activity that might otherwise seem meaningless (Angrosino 1994, 26). He explores the self-presentations of people with intellectual disabilities as strategies for managing their dependency upon others (Angrosino 1999). People’s way of presenting themselves, he argues, are neither innocent facts nor efforts to cover up who they really are (1998, 269). They are ‘extended metaphors of the self’, produced by feeling, thinking, and interacting agents (Angrosino 1994, 24). People with ‘mental conditions’ hold these as much as anyone else, to the point that we ought to question the position from which we are attributing intellectual disability to anyone in the first place.

Developing an ethnographic mode of attending to the lives of people diagnosed with intellectual disability is one of the most important contributions of this research tradition (see also Cascio and Racine 2019). By combining scrutiny of official categories with detailed empirical work with the people themselves, this work reveals the complexity and challenging nature of the social worlds these people must navigate, as well as how many seemingly ‘pathological’ or ‘disabled’ forms of action are frequently strategies for negotiating those worlds (e.g. Koegel 1988a; Whittemore 1988; Goode 1992; Todis 1992; Levinson 2010).

The social production of intellectual disability

Alongside a tradition of historical scholarship on intellectual disability (Wright and Digby 1996; Thomson 1998; Goodey 2016), scattered anthropological works on the Global North show how particular economic, political, and institutional arrangements make the category appear as something that seems natural, stable, and objective.

Educational institutions play a central role in naturalising intellectual disability, as they differentiate between intellectual capacities and stratify people based on the kinds of minds they have. Could it even be that the educational system does not find these differences but instead creates them (McDermott 1993; Gleason 1989; Mercieca 2013; Avery 2020; Rapp and Ginsburg 2011b)? Classroom tasks and, most of all, tests can make people appear as disabled, given that they foreground and stigmatise ‘differential rates of learning’ (McDermott 1993, 272; see also Avery 2020; McDermott and Varenne 1995; McDermott et al. 2006). If it is not simply different learning speeds that cause the diagnosis, but rather the diagnostic system that causes something called ‘disability’ to appear as notable, different, and defective in the first place, then educational settings may well produce ‘intellectual disability’ as a seemingly natural fact.

State institutions continue to shape the lives of people with intellectual disabilities after leaving school, primarily through the care system. This system typically prioritises their basic needs over the facilitation of their lives more broadly, making it nearly impossible for these people to achieve culturally valued forms of adulthood (Mietola and Vehmas 2019; Vehmas and Mietola 2021). Staff who care for people with intellectual disabilities, especially in institutions, often view ‘pathological’ forms of behaviour as the direct result of these disabled people’s defective psyches (Johnson 1998; Goffman 1968; Bogdan and Taylor 1992). The cruel irony is that this behaviour is rarely innate but often the response to the inexpert, even abusive, ways in which the care itself is managed. Anger and violence, for example, are frequently a protest against confinement, neglect, and coercion (Johnson 1998; McKearney 2021a, 2022). When residents are exposed to these conditions (and to the resulting aggressive behaviour of other residents), it ought to be no surprise they too may become aggressive. Put simply, it is often the care itself that transforms people into the, at times, violent beings that they are expected to be in these contexts.

Across these contemporary state institutions, there are tensions between contrasting ways of governing people with intellectual disabilities that pull them and their carers in opposing directions (Redley 2018). On the one hand, intellectual disability marks out particularly dependent people as legitimate recipients of state welfare. On the other, it identifies them as subjects whose rights are in danger of being overridden. Even if it might be possible to resolve this tension in theory (see Redley and Weinberg 2007), anthropologists demonstrate that the two aspirations of receiving welfare and having rights can lead carers and people with disabilities themselves into conflicts they cannot resolve (Todis 1992; McKearney 2021a, 2022; Davies 2002, 1999; Levinson 2010).

Dependence in Euro-America: Beyond the institution

Anthropologists ask whether a person’s incapacity to be productive and independent only leads to social exclusion in certain contexts. Might intellectual disability manifest differently, or at all, outside of these state institutions? Could intellectual disability be the product of the way in which capitalist societies organise labour markets, and deal with those who are judged to be unproductive? A body of work draws on feminist scholarship to analyse alternative forms of care, principally within the family, as lessening the necessity of and the value placed on autonomy, capacity, and independence. By focusing on relationships of care, it asks: what becomes of intellectual disability in contexts more accommodating of dependence?

Take as an example the transformations that parenting an intellectually disabled child brings (e.g. Hubert 1991; Rapp 1999; Rapp and Ginsburg 2011a, 2018; Landsman 2009; Mattingly 2010; Jackson 2021). Within the United States, everyday expectations about childhood development and the frequently assumed ‘worthlessness’ of an intellectually disabled life can devalue children with intellectual impairments. These expectations can also stigmatise parents, particularly mothers. In the face of this, mothers of disabled children have been shown to rethink their own life and that of their children, imagining new familial futures with integrity, meaning, and value. In practice, they develop new social networks with other parents of disabled children and develop daily care practices that can stretch over a lifetime, rather than ending with a child becoming an adult (Landsman 2009; Rapp 1999). Similarly, the families of intellectually disabled children often become forces for ‘cultural innovation’ that build new models of and for kinship, education, and citizenship. For example, parents actively work to support scientific work on the conditions their children have (Rapp 2011), advocate for more inclusive school programs (Rapp and Ginsburg 2011b), and produce new forms of media that foster greater disability awareness (Rapp and Ginsburg 2011a).

Creating hopeful possibilities can even take shape in professional caring relationships beyond the kinship group (Vehmas and Mietola 2021). Professional carers in the Netherlands are meant to pursue an ideal of autonomy in their work, presuming that those with intellectual disabilities are able to ‘govern their own lives’ (Pols, Althoff and Bransen 2017, 781). But, in practice, when, for example, people with intellectual disabilities engage in substance abuse, carers may think their choices are ‘not good for their own well-being’ (Pols, Althoff and Bransen 2017, 777; McKearney 2020). In these instances, the ideal of autonomy risks guiding carers towards neglect. Therefore, carers attempt to persuade care-recipients away from bad decisions towards better ones. Such care breaks with ideals of independence in liberal societies, and assumes that minds are predominantly relational rather than self-sufficient, not closed systems but open to ‘influence’ (Pols, Althoff, and Bransen 2017, 781; see also McKearney 2021a).

Sexuality is another arena in which the form care takes makes an enormous difference to the possibilities of people with intellectual disabilities. In Denmark, caregivers facilitate sexual intimacy for physically and mentally disabled adults in need of long-term support. This is made possible by an expansive welfare state and progressive disability legislation, enabling kin, professional carers, and sex workers to render sexual encounters possible for people with intellectual disabilities. The case of Denmark sits in striking contrast to its neighbour, Sweden, which likewise has a robust welfare state but nonetheless supresses rather than facilitates the sexual lives of disabled adults in care settings (Kulick and Rydstöm 2015; see also Vehmas and Mietola 2021).

The contrast between Denmark and Sweden suggests that more research is needed to understand how various social, political, and legal conditions support or constrain the sexual, romantic, and reproductive lives of disabled people. Yet research suggests a wide trend of suppressing, ignoring, or trivialising the sexuality of people understood to have intellectual disabilities across a variety of very different countries, to which Denmark is an exception proving the rule. This is evident even in countries with very different histories (e.g. Soniya 2022). In Brazil, for example, there was not the widespread institutionalisation which took place in North America and much of Europe, yet no less than in Europe and North America did Brazilian educators and caregivers discourage and even actively prevent the sex lives of people considered to have intellectual disabilities (Block 2002; see also Ramawati and Block 2020).

Another domain where the kinds of support and care people receive make a big difference is communication and language. Insofar as intellectual disability may mean that people do not speak or communicate in typical ways, educators, parents, and disabled people themselves have experimented with assistive technologies to foster alternatives means of communication, ranging from simple books with pictures and phrases to complex computer programs. Such efforts are controversial, with critics raising doubts about who is actually communicating in the practice of ‘facilitated communication’. Anthropological studies of these assistive technologies demonstrate the ways in which all communication is facilitated, for disabled and non-disabled people alike, while showing how particular communicative technologies can help build disabled personhood and enable meaningful interactions, exchanges, and relationships (Rutherford 2021; Wolf-Meyer 2020a, 2020b).

This leads to broader questions about the kind of social relations that people with intellectual disabilities can enter into, particularly outside of the context of the large-scale institutions which have fallen out of favour in many Euro-American contexts since the mid-twentieth century. The expansion of relational possibilities is a prominent theme in ethnographic work on L’Arche communities. L’Arche originated as a Roman-Catholic venture in France and has become a federation of ecumenical, interfaith, small-scale residential communities across the world in which those with and without intellectual disabilities share life together (Cushing and Lewis 2002; McKearney 2017, 2018, 2019a; Angrosino 2003; Zoanni 2019). Contemporary social policy in Euro-America typically imagines social life as happening only outside of the caring relationship, and thus in a sphere which government-funded care by definition cannot directly influence (McKearney 2017; Mietola and Vehmas 2019; Vehmas and Mietola 2021). By contrast, in L’Arche homes in the UK, the dependence of those with intellectual disabilities is transformed from a barrier to intimacy, belonging, and interaction into the foundation of it (McKearney 2017; 2018; 2019a). People with intellectual disabilities in L’Arche live together with their carers, who are trained to treat the dependence of others as enriching rather than burdensome. The underlying idea is that all people have vulnerabilities and dependencies, and thus all people need care. In such settings, care homes are no longer stigmatised places outside of society that residents need to leave in order to socialise, but sites of vibrant social interaction in their own right (McKearney 2021b; see also Vehmas and Mietola 2021, 87-111). In this way, institutional settings may serve as ‘institutional utopias’ that foster communal forms of support (Block 2007; see also Siebers 2007; R. Jackson 2011).

This work raises the question as to whether there might be whole societies, and not just minority communities, institutions, or individual caring relationships, where intellectual disability is considered less of a problem and perhaps even socially and emotionally productive. Anthropology has long attended to the possibility that other societies might enact relationality and dependence quite differently from the West (e.g. Wagner 1975; Dumont 1980, 1986; Strathern 1990; Mahmood 2012; J. Ferguson 2013; see also Robbins 2013). Might people with intellectual disabilities struggle not only on certain psychometric tests, but also with a specific kind of Euro-American adult life that requires a high degree of individual autonomy?

Cross-cultural research on intellectual disability

In thinking about the lives of people with intellectual disabilities outside Euro-American settings, two contrasting and very generalising assumptions exist, assumptions which are not yet particularly informed by empirical research. The first, a staple of humanitarian and developmental projects, is that the lives of such people are invariably worse, due to lack of resources, ‘backward’ attitudes, pervasive stigma, and the like (Rohwerder 2018; see also Ingstad 1995).

The second assumption is that the lives of those who would be grouped under ‘intellectual disability’ in Euro-American contexts must be much better elsewhere, and perhaps not even recognised as being deficient at all. This assumption grows out of a particular critical social scientific way of thinking about intellectual disability. Social scientists have claimed in a range of different ways that ‘intellectual disability’ does not refer to anything other than a way in which certain Euro-American institutions apprehend people (Goodley 2001; Rapley 2004). At the most general level, scholars have argued that disability in general, and intellectual disability in particular, is simply the product of the demands of modern industrial capitalism, while positing that in other cultures and in ‘pre-modern’ Europe, people with cognitive impairments led relatively normal lives (e.g. Ginzberg 1965; Oliver 1989). More specifically, other scholars argued that labelling someone as having an ‘intellectual disability’ is a performative act that does not so much describe a neutral biological condition, but rather socially makes someone ‘intellectually disabled’ (Dexter 1964; Goode 1992; Rapley 2004; Lungren 1999; P. M. Ferguson, Ferguson and Taylor 1992, 296). The fact that IQ is a conspicuously ‘invented entity’ only deepens this critique’s force (Douglas 1980). In particular, and in line with wider developments in social theory, critiques of institutions argue that the classification of people according to ‘intelligence’ was more than anything a disciplinary project that served to reproduce asylums and the forms of medical expertise and governance they entailed (see Edgerton 1970, 524-7).

Yet there is evidence that something analogous to intellectual disability persists even outside of the formal situations in which it is conspicuous and labelled (e.g. Edgerton 1988). Young adults in one study in California were regarded as impaired outside of school, for instance, when people noticed their incapacity to tell the time, to count money, or to comprehend the stakes of their decisions (Kogel and Edgerton 1984; see also Kernan and Sharon 1984). This raises the possibility that intellectual disability is not entirely a social construction, but reflects a condition of impairment that is ‘the product of an interaction between environmental and biological factors’ (Edgerton 1993, xiv). In any case, extant cross-cultural ethnographic research by no means demonstrates that intellectual disability is always inconspicuous, better accommodated, or less stigmatised outside of the institutions of the industrialised West (Edgerton 1970; see also Groce 1992).

Cross-cultural research on intellectual disability has only occasionally been gathered together in comparative fashion (Jenkins 1999; McKearney and Zoanni 2018; McKearney and Zogas 2021). But what has been done starts to build a picture of the diversity and complexity of ways that intellectual impairment is responded to outside of the West or the Global North. In the absence of significant state support, care is often organised at the margins of existing kinship structures. In Jordan, Brazil, and India, mothers who are primarily responsible for their children’s care are desperately worried about who, after they die, will look after their offspring (Fietz 2019, 2020; Soniya 2022; Mehrotra and Vaidya 2008; Sargent 2019, 2020, 2021). Although this is also a common worry in the Global North, there is little state welfare in Jordan, Brazil, or India to provide residence or on-going care, thus raising the existential stakes. Even for those families that have the resources, paying for private residential care to be provided by non-kin is a ‘relatively uncommon and unpopular option’; indeed, it is one that is often highly stigmatised (Sargent 2021, 1-2; Fietz 2020). Mothers are further uncertain about whether their other children or the child’s potential spouses will take on such a responsibility.

In some cases, people work towards the creation of new forms of voluntary institutions for care beyond parents’ lives (Aydos and Fietz 2017; Fietz 2020). In stark contrast to societies in which care is expected to be separated from romance and sexuality, marriage is often practised as a way of creating new relationships of dependence with the spouse or their parents (Sargent 2021; Manor-Binyami 2018; see also Craft and Craft 1980; Kulick and Rydström 2015). Indeed, in a context in which everyone remains within hierarchical kinship relations and frequently in complex webs of dependence within the home, people with intellectual disabilities rarely become conspicuous solely for the fact of being unable to operate totally autonomously.

A small body of work on sub-Saharan Africa explores how intellectual disability manifests in interactions between non-typical minds and the wider fabric of social life. Within Uganda, for example, though people in rural areas may not have been exposed to understandings of intellectual disability from the Global North, they still articulate a highly elaborated and often stigmatising set of categories and terms for perceived cognitive impairment (Whyte 1998). In contemporary urban Uganda, understandings of intellectual disability are forged at the intersection of local models of the mind, longstanding patterns of kinship care, and newer forms of Christian charity (Zoanni 2018; 2021). A person may only stand out as ‘disabled’ when they break particular social expectations about key features of personhood, such as by lacking the ability to speak or the capacity to be socially and biologically reproductive. This leads to different arrangements of care in which, for example, a person with cerebral palsy (which generally entails no intellectual impairment) is offered care in a group home, while someone with Down Syndrome may work as a taxi driver (Zoanni 2021). Outside kinship relations, dedicated care for people with intellectual disabilities is only available within a handful of primarily Christian institutions, which in turn reproduce models of highly paternalistic care that renders the cared-for as ‘children’. At the same time, the category of the ‘child’ provides a socially legible status that affirms disabled people as deserving of care and resources (Zoanni 2019).

Things unfold differently in other African countries. In Botswana, people with a number of severe impairments, including developmental and cognitive ones, are sometimes grouped under the overarching category mopakwane (Livingston 2006; Ingstand 1995; see also Ingstad and Whyte 1995, 2007). Mopakwane are typically cared for by their families, and their arrival thus involves a significant rearrangement of expectations for the life course and the kinship group. Parents will likely be blamed for the child’s condition, but typically try to move responsibility away from themselves by claiming that it is something that naturally happens, that it was the result of witchcraft, or that mopakwane are, in fact, a gift from God (Ingstad 1995).

In these circumstances, the specific way of parsing intelligence behind the psychiatric framing of ‘intellectual disability’ gives way to alternative categories for comprehending differences, such as people’s capacity to care for children, to marry, to do certain kinds of work, to speak, or to comport themselves properly (McKearney and Zogas 2021). Research on Africa further suggests something parallel to the emergence of the notion of intellectual disability in the Global North. Colonial and postcolonial demands for the creation of school systems, new expectations of literacy, and new regimes of testing created conditions that rendered children markedly disabled in a way that was not true for earlier circumstances, especially in rural settings (Whyte 1998; Livingston 2006; Zoanni 2020). This research also demonstrates that alternative forms of social organisation can create opportunities for those with intellectual disabilities: to be less conspicuous, to remain within relations of care, and to access relationships in which they are recognised as full persons.

None of this ethnographic work confirms hopes that different arrangements of social life and alternative expectations about personhood resolve all potential difficulties. The reliance of people with intellectual disabilities upon others troubles expectations about work in Jordan, Uganda, and India. Even supposedly ‘manual’ or ‘menial’ work can involve complex demands that not everyone in a society is capable of (Groce 1992; Edgerton 1970). Intellectual disability troubles the kinship systems for organising care in these contexts, and thus the expectations about personhood that they rely on. Even if such societies expect people to be dependent, they tend also to expect changes over the life course in how that dependence manifests and interacts with that of others. In none of these societies, for instance, are others any less concerned than they are in Euro-America about the possibility of those with intellectual disabilities raising children (Craft and Craft 1980; Booth and Booth 1999). In addition, the sense that intellectual disability is a significant enough problem that people need to account for its cause or origins and to distribute responsibility for it is a surprising continuity across many ethnographies within and beyond Euro-America (Mehrotra and Vaidya 2008; Gammeltoft 2014; Sargent 2020; Mattingly 2010; Landsman 2009).

For reasons like these, the various responses to dependence in these ethnographies are not best parsed in terms of whether a society accepts or rejects it. Instead, they more particularly relate to how care is socially organised over the life course. In much of Euro-America, welfare states support kinship care of disabled children during early years through medical and educational institutions. The transition to adulthood produces a distinct rupture as young adults are expected to move beyond their domestic support (Rapp and Ginsburg 2018; Mietola & Vehmas 2019). People with intellectual disabilities struggle to access further education or work, and to develop the skills for independent living that would lay the ground for such a transition. But the forms of residential care outside the family home, which might replicate independent forms of adulthood and replace kinship care, can only be accessed through an entirely different set of social services.

By contrast, in India, Uganda, Brazil, and Jordan leaving school is rarely correlated with expectations about independent living. Parents struggle to find forms of support beyond the education system, but the more significant crisis is normally the death of the parents. People with intellectual disabilities in Euro-America who do not rely on professional care can often be in similar positions. But there are many, by this stage in the life cycle, who will have already moved to a stable residence and care provision beyond the parental home. In countries without state welfare systems, by contrast, this moment will almost always necessitate finding and relocating to a new form of residence and care. Here, parents, families, and the disabled people themselves rarely have established patterns, structures, and ideas about what that might involve.

Carrying this research forward requires seriously engaging with the way that the psychiatric category of intellectual disability has become globalised, which is likely to be partial and patchy (Zoanni 2021). It is a significant limitation not only of psychology and medicine, but also of the social sciences and history, that we have so little work beyond Euro-American contexts on which to base better comparisons. But if anthropology has not yet furnished us with a wealth of empirical examples, its tradition of research in this area has nevertheless left us with ways we can investigate intellectual disability in a properly cross-cultural ethnographic perspective.

Conclusion: Towards an anthropology of competence

Anthropology offers a way to put into social perspective the individualised concept of mental development that underwrites psychiatric approaches to intellectual disability. The DSM-V defines intellectual disability in terms of a lack of progress towards expected milestones, and the failure to attain full mental ‘maturity’. In doing so, it gives passing mention to the fact that such expectations will vary cross-culturally. Anthropological work is well positioned to explore this issue and demonstrate its centrality. Likewise, insofar as many anthropological approaches to intellectual disability emphasise the life course (Langness and Levine 1988a; Mietola and Vehmas 2019), they sketch a path for moving beyond understanding intellectual disability as a biologically-caused deviation of an individual from a universal path of mental development. Rather, they demand analysing intellectual disability in terms of an increasing lack of ‘fit’ between particular expectations for maturation and a person in all their particularity (Garland-Thomson 2011).

In this way, anthropological approaches challenge us to think more broadly than DSM categories alone. On this front, Edgerton’s concept of ‘competence’ may be helpful. Existing cross-cultural studies of competence in relation to intellectual disability shift the emphasis from theoretical debates about the condition’s social and cultural construction into an empirical investigation (Jenkins 1999). The concept foregrounds people’s capacities, rather than limitations, opens up the definitional gaps of the DSM-V, and raises the question of whether individual responsibility and independence are in fact prerequisites of a meaningful life. The concept also focuses our attention on the concrete cultural expectations, political-economic demands, histories of classification, and environmental and material conditions in particular places. All of these factors play a central, yet not easily predictable, role in the way intellectual disability manifests, is experienced, and plays out in practice.

A focus on competence is one way in which anthropology avoids reducing intellectual disability either to a biological pathology residing in an individual brain, or to nothing but a social fiction that is wholly a product of language and categories. Anthropology requires us to investigate ethnographically the normative features of any given setting, the forms of learning that enable people to follow them, and how precisely people end up departing from them. Ethnography allows us to view persons deemed intellectually disabled over time, to attend to what pulls them away from expected developmental paths, and to track how those departures come to be imagined, classified, and responded to. It thereby foregrounds the significance and the complexity of the relational lives of people with intellectual disabilities.

In all of these respects, anthropological research reveals dimensions of the social and cultural life of intellectual disability that biomedical and professional research rarely enquires into, let alone comprehends. An anthropology that developed and expanded its own still-nascent tradition of detailed cross-cultural research in this area would enable us to answer crucial unanswered questions about how the condition is differently constructed, responded to, and lived across the world.

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Note on contributors

Patrick McKearney is an assistant professor at the Department of Anthropology at the University of Amsterdam. His research focuses on the lives of adults with intellectual disabilities in India, Italy, and the UK. His published work focuses on the relationship between care, intimacy, and ethics and he has co-edited two special issues on the anthropology of cognitive disability. ORCID: https://orcid.org/0000-0001-8988-0101

Patrick McKearney, University of Amsterdam, Department of Anthropology, Postbus 15509, 1001 NA Amsterdam. p.t.mckearney@uva.nl

Tyler Zoanni is Assistant Professor of Anthropology at the University of Bremen. He is finishing a book on intellectual disability and personhood in Uganda, and he has co-edited two special issues focused on cognitive disability and disability in the Global South. His research interests more generally include politics, health, religion, kinship, aesthetics, and subjectivity, especially in East/Central and Indian Ocean Africa. ORCID: https://orcid.org/0000-0003-2519-107X

Tyler Zoanni. Universität Bremen,Institut für Ethnologie und Kulturwissenschaft, Fachbereich 9,Postfach 330 440,28334 Bremen. zoanni@uni-bremen.de

[1] Past versions of the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders (DSM) referred to ‘mental retardation’. The 2013 DSM-5 changes nomenclature to ‘intellectual disability’, in line with accepted international academic usage as well as a 2010 US federal statute outlawing the use of the previous term (Wills 2014). This entry uses the term ‘intellectual disability’ except when referring to historical or academic contexts in which a different term was used.

Social reproduction

Rebecca Tishler — Sat, 25 Sep 2021 21:09:51 +0000

Hadas Weiss

Initially published 25 Sep 2021

http://doi.org/10.29164/21socialrepro

Abstract:

Social reproduction is a lens through which to analyse the persistence of society over time, even as its human and material components keep changing. Its main value is in identifying and explaining tensions that emerge between the logic that reproduces society, and the continued survival (biological reproduction) and wellbeing of the population. Its origins are in Karl Marx’s critique of capitalist society, as governed by a drive towards accumulation. Initially, anthropologists have sought inspiration from Marx in examining the reproduction of non-capitalist societies, but they have since largely joined adjacent disciplines in focusing on capitalism. Modern social reproduction theory has proceeded from blind spots in Marx’s analysis, primarily regarding the role of women and domestic work in maintaining current workers and non-workers. From there, it has expanded to examine other fault lines in the reproduction of capitalist society. Contemporary strands of social reproduction theory attend to crises that emerge with respect to care work and livelihoods as finance becomes the main motor of accumulation. They also underline ways in which the reproduction of society reproduces inequalities within it. For ethnographers, attention to social reproduction illuminates the entanglements of any chosen fieldsite and plights therein with broader dynamics of accumulation.

Introduction

Social reproduction is a concept used in anthropology and adjacent disciplines to make sense of society’s continuity over time as recognisably the same entity. Its primary focus is therefore the logic (a composite of forces and institutions) that organises finite, ever-changing things and people into categories, positions, and patterns of behaviour that exceed their individual existence. Inevitably, social reproduction also attends to the persistence of society’s members: their biological reproduction (including the sexual relations and fertility that generate it) and the sources of their survival, longevity, and wellbeing. Biological reproduction, no less than the reproduction of a specific culture, institution, or phenomenon, is nevertheless understood to be subordinate to the reproduction of society writ large, which is the unit to which ‘social reproduction’ refers. The analytic value of social reproduction theory is precisely where the two key aspects of society—its logic and its human components—are in tension with each another. Focusing on social reproduction tends to work best when it allows us to recognise this tension, explain it, and identify ways in which it could be reduced or overcome.

The tension between society’s logic and the survival and wellbeing of its members is particularly jarring in capitalist society. This is so because the logic that holds capitalist society together cannot be reduced to the decrees (supporting the continued survival and wellbeing) of any one person or group of people. Social reproduction theory has emerged out of the writings of capitalism’s main critic, Karl Marx (1992 [1867]; 1992 [1885] and other writings). While anthropologists have also used it to analyse pre-capitalist and non-capitalist societies, social reproduction as an analytic has proven most fruitful at illuminating the fault lines of capitalist society, including those that Marx himself had overlooked. Its main uses today, then, both within and outside of anthropology, are in mounting a critique of capitalism as it manifests itself in particular fieldsites and empirical case studies.

Anthropology’s baseline for working out the logic of society has been interdependence: that is, the dependence of society’s members on each other, as the glue that keeps a very large group of people together (Martin 2021). Insofar as interdependence is taken to be established through reciprocal exchange (Mauss 2018 [1925]), however, it cannot explain the long-term and inter-generational interactions that social reproduction entails (Weiner 1980). Nor does it capture the multiplicity of transactions that do not proceed symmetrically or reciprocally. The ubiquity of hierarchies and inequalities suggests, rather, something more fundamental against which everything else in society is synchronised. Inspired by Marx’s thought, social reproduction theory traces this something to the way in which a society’s resources are produced and distributed; and it goes on to ask how this production process reproduces itself (Godelier 1977).

What follows is a brief account of the journey that anthropology and adjacent disciplines have travelled in studying social reproduction. It begins with the theory’s origins in Marx’s analysis of capitalist society as governed by a logic of accumulation. It continues with feminist scholars’ insistence on the constitutive role of unwaged domestic labour. It then arrives at the various articulations of social reproduction theory against the backdrop of contemporary crises and finance-led capitalism. The entry ends with a reference to the role of culture and ideology in the reproduction of social inequalities.

Marxian origins

The concept of ‘reproduction’ presupposes the existence of something that is being reproduced, and expresses a preoccupation with its continuity, persistence, and repetition (Burawoy 1976). This something cannot be a material entity, as such entities perish and transform. Rather, it is likely a relation; one so foundational as to form the condition for every instance that occurs next, generating the consistency of each subsequent occurrence (Balibar 1970).

Karl Marx (1992 [1867]) identified this core relation, in capitalist society, as that which pertains between ‘capital’, i.e. money and material resources for investment in the production of goods and services to be sold on the market, and ‘labour power’, i.e. the capacity of largely propertyless but legally free people to work. Although this relation is an abstraction, it can and often is embodied in people, namely in capitalists, who own and invest the means to produce, and in workers, who sell their capacity to work for a wage. The relation is foundational because it structures everyone’s behaviour to a considerable extent. Capitalists are forced by competition with other capitalists to pursue market-mediated profit lest they be pushed out of business and cease being capitalists. And workers are forced by lack of independent means of livelihood to sell their labour power for a wage with which to buy the things they need and want.

What drives capitalist society’s reproduction, according to Marx, is therefore compulsion: the actions of all members of society being carried out under the domination of something external to them. The domination is ‘structural’; that is, enforced not by people but by structures and institutions, chief among them being the market. Marx showed how everything that is produced under capitalism is produced to be sold on the market. It is where capitalists obtain the material and human resources for undertaking production, and where workers obtain their living necessities. As both capital and labour power depend on it for the most basic conditions of their existence, the market exacts pressures and incentives that regulate and synchronise the reproduction of society at large (Wood 2002).

According to Marx, for capital to always be available for production, the value that workers produce in their work must exceed the value represented in their wages. Capitalists pocket the so-called ‘surplus value’ as profit, and they reinvest it. The capitalist market operates through them towards the goal of accumulation: the creation of surplus value that, when reinvested, launches the next cycle of production. And so, each new cycle of production resets the conditions for subsequent production and accumulation. This dynamic requires not only that there be enough capital for reinvestment, but also that there be enough workers to keep production going, and to buy the product and thereby ‘realise’ its profit. Marx identified this as a contradictory dynamic because capital stands in opposition to labour. On the one hand, the lower workers’ wages are, the greater the surplus value available for accumulation. On the other, wages must be high enough for workers to continue working, consuming, and raising the next generation of workers so that production won’t come to a standstill.

This renders the reproduction of capitalist society a bumpy, crisis-ridden affair. Capitalists overproduce to undersell their competitors, partly through ever-greater automation, whose surpluses end up being destroyed or devalued. The tighter the competition among capitalists, the harder to achieve the profits of yesteryear. Hence, escalating competition and automation, which in turn reduce the demand for and value of people’s labour power (Marx 1992 [1867]: 762-794). Unemployed, underemployed, and poorly paid workers struggle to purchase the stuff they need and desire. Resources must be distributed to smooth the process of reproduction. Marx therefore discussed ‘schemes of reproduction’ in the second volume of Capital (1992 [1885]) as the allocation of resources to people and of people to resources in a way that supports the continuity of production and, perforce, of accumulation (Narotzky 1997).

Throughout his writings on capitalism, Marx insisted on the interdependence of the production, consumption, and circulation of both people and things. Yet, anthropologists drawing inspiration from Marx in their studies of non-capitalist societies have found it useful to confine ‘production’ to the technical process of creating things. Arguing that it is not the predominant logic of non-capitalist economies, they could thereby focus on the logic that governs the biological reproduction and circulation of people (Gregory 1982).

A forerunner of social reproduction theory in anthropology has been Claude Meillassoux (1972, 1981), who had applied Marxian insights to pre-capitalist societies. He characterised the mode of production of Neolithic peasant communities as the agricultural cycle. Its slow pace forged lifelong and intergenerational dependencies. At all times, the workers of one agricultural cycle were indebted for seed and food to the workers of the previous one, and they supplied seed and food to their dependents and successors. Since these communities sustained themselves on agricultural work, their elders—the creditors of seed—managed the work and product of juniors. Each household needed a workforce large enough to make optimal use of its land, so elders also managed the ‘distribution’ of the women who birthed and raised children. Their socially reproductive task was thus matching the number of working hands to productive capacities. Meillassoux (1981) claimed that a similar logic of social reproduction persisted in capitalism’s peripheries. There, miners and factory workers live and subsist on farms, exiting them when their work is in demand. This allows employers to pay them only the wages necessary to cover their actual work time and throw them back on their families for the rest.

While acknowledging Meillassoux’s contribution to our understanding of social reproduction, anthropologists have nevertheless faulted him for positing a biological rather than a social basis for women’s oppression (Donham 1999; Katz 1983; O’Laughlin 1977) and for overemphasising women’s biological reproduction at the expense of their domestic work (Collier & Yanagisako 1987; Harris & Young 1981), issues that will resurface among feminist theorists of social reproduction. They have also faulted him for analytically separating production from reproduction, thereby defying the Marxian principle that ‘as a connected whole, and in the constant flux of its incessant renewal, every social process of production is, at the same time, a process of reproduction’ (Marx 1992 [1867]: 711) (O’Laughlin 1977; c.f. Weiss 2018).

Separating production from reproduction makes even less sense for capitalist societies, whose reproduction can be simply considered the net result of its specific production process (Cammack 2020). Yet, the insistence of an earlier generation of anthropologists to examine the reproduction of people in contradistinction to that of things bespeaks a refusal to sideline the human components of a social logic that operates ‘as a connected whole’. This refusal lingers on in contemporary social reproduction theory, which emphasises the reproduction of labour power, livelihoods, and care.

Feminist interventions

One of the conditions for capitalist society to reproduce itself is that the workers producing surplus value receive wages to sustain them and their dependents. This should allow them to continue working and to raise the next generation of workers. Marx often wrote as if the wages of workers, and the goods and services they could buy, would lead to labour power’s daily maintenance and generational renewal without further ado. Yet, women not only give birth to workers; historically, they have also been disproportionately those raising and educating them, on top of caring for other dependents, making the house liveable, preparing meals, and so forth. Such domestic labour, because it is unwaged and not directly performed for market exchange, has been taken for granted and fell out of the traditional Marxian purview.

Feminists have long objected to the devaluation of domestic labour. In the 1970s, a Wages for Housework Campaign initiated public discussion about revalorising it. Anthropologists of the period, inspired by Friedrich Engels’ 1884 book The origin of the family, private property and the state, have pursued gender issues in the reproductive process, as a feminised sphere of ‘domestic production’, distinct but no less important than waged, market-mediated production (Edholm et al. 1977; Harris & Young 1981; Sacks 1979). Anthropologists Jane Collier and Sylvia Yanagisako (1981) conceded that the distinction between men’s production and women’s reproduction reflects empirical observation. Yet, they warned against using it as a basis for theory, since strictly separating production from reproduction risks making a universal law out of a historically specific phenomenon. The same criticism could apply to assumptions about transhistorical sexism or patriarchy which, while noting how women’s undervalued domestic work intersects with capitalism, fail to consider what in capitalism itself produces it.

A touchstone of modern social reproduction theory has been Lise Vogel’s (2013 [1979]) anchoring of women’s oppression in the reproduction of capitalism itself. Capitalist production necessitates biological processes specific to women (pregnancy, childbirth, lactation) to produce the next generation of workers. But this alone does not condemn women to subordination. Vogel explains that, while childbearing is necessary for capitalism, it is also problematic for it: reducing the childbearing woman’s capacity to work for a wage, it further requires that she be maintained during this period. One cost-cutting solution is that men be made responsible for their wives. The capitalist state, acting as an agent of accumulation, has controlled and regulated female reproduction by reinforcing a male-dominant order made up of breadwinning husbands and (temporarily) unwaged, childrearing wives. This arrangement not only devolves more power on husbands-as-providers; it also creates potential conflicts between men and women, to be addressed through gendered notions of ‘love’ and ‘sacrifice’ (Picchio 1992).

Control over women’s childbirth and domestic labour emerges, then, from capitalism’s need to produce, in an efficient way, the next generation of workers. This need is most overt where there is a shortage of labour power. A well-known account thereof is by Silvia Federici (2004), focusing on the sixteenth and seventeenth centuries. Population declines and the necessity for working hands had then induced the budding capitalist powers to criminalise celibacy and birth control. Women accused of such ‘reproductive crimes’ were persecuted as witches. Men were co-opted into this subjugation of women, finding in it a means of regaining some of the power they lost on being turned into propertyless workers. Women became, for them, substitutes for the lands that had been taken away from them: a basic means of livelihood, and a resource to appropriate and exploit. New cultural canons followed suit, establishing that women had to be placed under male control because they were allegedly excessively emotional and lusty or, once defeated, asexual beings that could edify the household.

Vogel (2013 [1979]) also emphasised that the socially reproductive labour of caring for household members and raising the next generation of workers was neither always nor necessarily performed by housewives. On the contrary: women’s domestic labour competes with capital’s drive to accumulation because women could be spending the same time working for a wage, directly fuelling the production of surplus. It serves accumulation well, then, to reduce the amount and cost of domestic labour and so, to free up more labour power and capital for investment in for-profit production.

Vogel specified several ways in which this is done. One is commodification: laundromats, ready-made clothing, and fast-food chains allow aspects of domestic labour to be purchased on the market. Childcare, housekeeping, and eldercare can also be made available at a price, in what Arlie Hochschild (2003) identified as the ‘commercialization of intimate life’. Devolving these tasks onto the for-profit sector also provides opportunities for capitalist entrepreneurs, fuelling profitability and accumulation. And mass production of domestic goods and services reduces their costs, enabling the lowering of wages and, perforce, of the costs of social reproduction (Picchio 1992).

Another means Vogel identified for minimising the amount and costs of domestic labour is by socialising it: public education, healthcare, and retirement make aspects of domestic labour the responsibility of the state. The corporate sector also plays a role in socialisation through institutions like occupational insurances and pensions. Taxes and corporate contributions distribute the costs of social reproduction more widely across the population. This multiplies the sites in which socially reproductive labour takes place, from the household to workplace training, parks and playgrounds, social housing, schools, social welfare programs, childcare and healthcare facilities, and so on (Katz 2001).

Finally, Vogel stipulated that the cost of domestic labour can be reduced by importing migrant labour to perform it. The socially reproductive labour of maintaining the workforce and of renewing it is thereby separated geographically: migrants are recruited from one country to serve as the workforce of another, where they are also maintained (Burawoy 1976). Migrant women from the Global South and from former-Soviet countries often do double duty for social reproduction: the breadwinners and providers of their own families through the remittances they send back, and those performing housekeeping and caretaking tasks for the families that employ them (Barber & Lem 2018).

Crisis and financialisation

Despite the multiple sites and means through which social reproduction is accomplished, social reproduction theory of the 1970s focused primarily on the household. This reflected the end of an era where public support for the male-breadwinner/female-homemaker model was at its highest. Following the Great Depression and Second World War, states in the core of global capitalism assumed some public responsibility over welfare, investing in healthcare, schooling, childcare, and pensions. Sparking economic demand among (primarily white and unionised) workers, and supplying them with the means to consume, was deemed necessary for maintaining the profitability of mass production. Households were supported by more jobs, higher wages, and public-sector spending, becoming private spaces for the consumption of mass-produced objects of daily use: the domain of the housewife (Fraser 2017).

However, recent developments in capitalism have raised attention to reproductive activity that cuts through the household. The capitalism of the present, often called ‘financialised’ because finance is its main motor of accumulation, has seen the relocation of manufacturing to low-wage regions and the mass recruitment of women into the paid workforce. Firms struggling to maintain profitability squeeze labour power such that wages decline, raising the number of hours of waged labour per household needed to support a family. Jobs become precarious, with workers (now including most mothers) having to increase workloads while dealing with less predictable work schedules, shift work, and longer work hours. This dovetails with higher divorce rates and single-parent households, and with a rollback in public support for healthcare, childcare, and eldercare. A so-called ‘crisis of care’ ensues, as care work is foisted upon families just as their capacity to perform it diminishes (Bakker 2007; Bakker & Gill 2003; Fraser 2017). Care work intensifies to such an extent that it becomes the most visible manifestation of social reproduction and is sometimes erroneously conflated with it.

A new strand of social reproduction theory foregrounds lives and livelihoods under such strains. It zeroes in on the work that maintains and renews labour power, while also identifying the people who perform it as an oppressed class, capable of transformative political action. In making visible their socially reproductive labour, it links it to other categories of oppression such as gender, race, and disability, asking how they are reproduced along with the reproduction of accumulation (Bhattacharya 2017). It further insists that capital’s drive to instrumentalise labour power runs up against sentient beings that cannot be fully subsumed as workers. It holds that, in the face of pressure to speed up and short-change socially reproductive labour, the people who perform this labour—maids, eldercare workers, social workers, etc.—confront the real needs of vulnerable populations. In helping them, they may even counter the alienating tendencies of capitalism (Ferguson 2020).

These ways of blending the reproduction of capitalist society with the reproduction of its members, as well as diagnosing the burdens on care work as a crisis of social reproduction, do much to foreground society’s human components. Yet, this intuition has its limits. Since the societies analysed are capitalist societies, the reproduction of lives and livelihoods within them can hardly be distinguished from that of their economies (Smith 2018). Labour power (which includes domestic labour, care work, and those performing it) is itself subsumed by the logic of accumulation rather than standing in opposition to it (Munro 2019). And capitalist reproduction does not ‘care’ for people in any meaningful sense of the term, as it does not necessitate the reproduction of the entire population or their wellbeing. It requires only enough workers to set the next cycle of production in motion (Cammack 2020; O’Laughlin 1977; Vogel 2013 [1979]). In an era of more jobseekers than jobs, maintaining every single person as a present or future worker, let alone the sick, disabled, and elderly, cannot be a priority when following the premises of capitalist accumulation. If capitalism can only be reproduced through the reproduction of both capital and labour power, the more urgent challenge is rather maintaining capital’s profitability (Weiss 2020).

Labour power took centre stage in an earlier era of industrial capitalism. But capital now bypasses its mass deployment, pursuing profit through financial channels. The household remains a nexus of social reproduction, but not only for being where labour power is maintained and renewed. Rather, it becomes a privileged site for making payments. For an increasing number of households, wages no longer cover all costs, and private debt finances things like housing, healthcare, and education. Households manage a range of regular payments, from utility bills through subscriptions to mortgage and credit card payments. Bundled together, these steady, risk-managed payment streams become assets for transactions by larger financial entities such as banks, pension funds, and institutional investors. Payments as means of sustaining family life are thus new profit opportunities for capital, replacing industry as key engines of accumulation (Adkins 2019; c.f. Federici 2014).

By no means does this ease the burden on women. They are a more vulnerable part of the workforce than men, and therefore the first to suffer from pressures upon it. And the shortage of jobs leads many more people to rely on their families for subsistence. If women are assigned most of the domestic work, they bear the brunt of this burden. Women also suffer directly through finance. Financing schemes usually target women, deemed easier than men to shame and pressure into repayment on account of their greater family and social entanglements. Women’s indebtedness thereupon strains these very relationships (Schuster 2015). The speedy and inexorable rhythm of women’s debt repayment may also attenuate the bond between mothers, preoccupied with debt servicing, and their children, whose educational trajectories orient them to long-term horizons (Newberry & Rosen 2020).

Inequality

Writing in 1979, Lise Vogel concluded that domestic labour cannot be completely removed from households: the costs of childcare and household maintenance are prohibitive while profitable day-care centres were yet to be established, making such services beyond most working-class households’ reach. But, at least in rich countries, things have since changed. With migrant labour and low wages in the care and service sectors, their costs are declining.

Recall that the relation in capitalism that, according to Marx, coordinates all others, is that between capital and labour power. It matters a great deal where a household and its members are positioned on the spectrum between them. Workers may be permanently or precariously employed. They may be high- or low-earning. And they may be propertyless or possess a home, savings, and credentials. As workers, they are all dominated by the pressures and incentives of accumulation and obliged to contribute to the production of more value than they receive. But they are also pitted against each other in a competition that allows some to benefit at the expense of others. This being the case, the focus on ‘households’ and ‘women’ for critically analysing social reproduction risks glossing over too much.

It still holds true that women’s unwaged domestic labour is among the factors that cheapens social reproduction, which in turn allows for the cheapening of waged labour. Every woman is exploited and dominated in this way. But these days, even households in capitalism’s core countries depend almost entirely on the wages of two adults to survive. Under pressure, women can and often do work harder at home, but wage declines more often lead to increases in female employment. However united women may be in their domestic labour, wages are what determines many of their possibilities. This is one major aspect of life where women’s interests are divided. The low wages and poor working conditions of housekeeping and childcare harms women who perform these services for a wage. But it allows other women to outsource this labour to others. Moreover, insufficient and inadequate employment makes education and cultivation more important for landing good jobs, and education is purchased at different qualities. This, while higher-income women who purchase housekeeping and childcare services can spend more development-enhancing time with their children. Wage levels make a huge difference, then, in the reproduction of each household’s social position (Gimenez 2018) and they serve as a wedge that divides women’s collective struggle for a better life.

This turns the provision of food and clothing, the managing of a budget, marriage and childrearing, homeownership, education, and public interventions, into ‘reproductive struggles’ (Weiss 2008) in which some have advantages over others. Social reproduction does not reproduce just any society; it reproduces a class society in which certain groups are empowered to and within their reproductive labour while others are disempowered (Ginsburg & Rapp 1995). Elite women, for instance, also devote unrecognised, unwaged labour to their families. But the goal of this labour is to ensure that their children get into the best schools and preserve their privileges (Glucksberg 2018; Kromidas 2021). Factory working men, in turn, must negotiate shift work to assume some of the unwaged reproductive labour that their working wives cannot undertake (Sabaté 2016). And racialised migrant women allow native European women to work outside their home for a wage, providing the housekeeping and childcare that rollbacks in public services have commodified (Farris 2017).

Not only households are divided according to their reproductive resources: communities and countries are, too. Geographers analyse social reproduction as reinforcing inequalities in space. Migrants are imported from low-income countries to perform domestic labour in high-income countries, while government disinvestments from welfare, healthcare, education, public space, and the environment generate spatially uneven erosion (Katz 2001). Anthropologists also foreground the role of culture and ideology in maintaining inequalities. The social relations involved in the reproduction of material life are bound up with their cultural expressions, just as culture itself is materially produced and embodied (Narotzky 1997).

Susana Narotzky (2021) demonstrates this in her ethnography of Ferrol, Spain. Its young adults express ambivalence regarding their parents: grateful for their material support, yet resentful of their privileges. Narotzky traces this ambivalence to different scales of social reproduction. The Spanish state, acting as an agent in the reproduction of finance-led accumulation, cuts back on pensions and restructures industry, squeezing the livelihoods of the old as well as the young. This intensifies the dependence of family members on each other, forcing them to pool resources. Still, pension cutbacks are promoted through a discourse of intergenerational fairness, as if different generations were vying for scarce resources. More generally, state policies are represented ideologically as aiming for sustainability, as if designed to ensure social reproduction in the very sense (the survival and wellbeing of the population) that they ultimately undermine.

Institutions like the church, the army, and above all schools, play important roles in social reproduction. These include instilling in their members the proper cultural knowhow and attitudes to preserve the social inequalities that accumulation generates (Althusser 2001 [1970]). Schools turn the favourable circumstances into which children are born into catalysts of success. Sent to a better school, these children’s upbringing prepares them to do well and gain confidence in their studies, making it easier for them to overcome obstacles that the less-prepared trip up on. Better school performance paves the path towards more valuable credentials and higher paying jobs. And higher wages allow for living in better school districts, where such advantages are bestowed upon the next generation (Bourdieu 1977; Bourdieu & Passeron 1977).

In contrast, disadvantaged children might gain favour among their circles by rebelling against school authorities and rejecting the paths marked out for them. But in so doing, they end up replicating in the workplace and on the streets the very disadvantages into which they were born (Bourgois 1995; Willis 1981a). In reflecting on his ethnography of how this happens in an industrial town in England, Paul Willis (1981b) explained that the reproduction of capitalist society occurs at a very high level of abstraction. While exacting material and social pressures, this process still allows each member of society to inhabit the role they inherit differently. In the terrain of culture and experience, space opens up for ethnographic research to illuminate struggles for and within social reproduction, particularly as they occur in sites that a narrow focus on market transactions neglects.

Conclusion

Social reproduction is a concept that exposes tensions between society’s logic of accumulation on the one hand, and the survival and wellbeing of the people subject to it on the other. An invaluable tool for anthropology, it points to capitalist society and the process of accumulation to which it is beholden as the main driving force in the dynamics of any chosen fieldsite and the struggles of those who occupy it. It defies, therefore, any bounding in space and time of ethnographic observations, making capitalism a key reference point. At the same time, capitalism cannot be accessed through interviews and observation alone, since ‘a mode of production does not tend to reveal itself directly in any spontaneous and intimate experience of those agents who reproduce it by their activity’ (Godelier 1977: 24).

This presents a special challenge for anthropology. While ethnographic study, with its on-the-ground focus, has the unique capacity to bring to light obscured aspects of social reproduction, anthropologists also bear a responsibility to conduct their fieldwork informed by an understanding of capitalist accumulation. Only then can they look beyond reported speech and observed occurrences to the structures that animate them. This introduces new research foci and widens the ethnographic imagination. Understanding practices and institutions in terms of social reproduction means seeing them less as isolated things and more as forces, agencies, and bridgeheads of power: facilitating some occurrences and preventing others (Smith 1999: 11).

Once trained to see social reproduction, it becomes impossible to unsee it. Plights and fortunes in any fieldsite invoke analogous instances elsewhere, making sense with respect to a broader logic. This has, in the first instance, a sobering effect. As Tania Li (2008) describes of her experiences studying poverty-reduction programs of development agencies in Indonesia, it bars one from being taken in by technical solutions to immediate problems which, in their blindness to social reproduction, are helpless against the persistence of misery. But one must also keep in mind—as Susana Narotzky (1997) reminds us—that it is not the objective of society to reproduce itself, and to theorise as if this were a foregone conclusion is to preclude the viability of ruptures and radical change. Social reproduction is therefore not the endpoint of inquiry. It is rather the beginning of an engaged anthropology; one that asks not only about the forces that reproduce inequality and domination, but also about how they are changing, and about how they can change still (Li 2008).

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Note on contributor

Hadas Weiss is a researcher at Humboldt University of Berlin. Her research deals with social and ideological aspects of contemporary capitalism as manifested in Israel, Germany, and Spain. She has published in anthropology and interdisciplinary journals and is the author of We have never been middle class: how social mobility misleads us (2019, Verso).

Dr. Hadas Weiss, Humboldt University, Unter den Linden 6, 10099 Berlin, Germany. hadaspweiss@gmail.com

Care

Rebecca Tishler — Tue, 14 Sep 2021 19:34:23 +0000

Patrick McKearney Megha Amrith

Initially published 14 Sep 2021

http://doi.org/10.29164/21care

Abstract:

There are many universal assumptions about what care is and how it ought to be provided. Such assumptions are widely embedded in public debates, government policies, and institutional forms of support. This entry presents three areas of anthropological work on how care is practised around the world in order to challenge these assumptions and demonstrate how care varies in unexpected ways. First, the entry explores how care is structured and, in particular, how it is organised by contemporary states and global markets. Second, the entry provides an overview of how, in everyday relationships of support, the political, economic, and moral dimensions of care become entangled in one another. This demonstrates how ethnography offers a different way to approach ethical and practical questions about what makes care good or effective in different cultural contexts and in different settings—such as in medical institutions or in the relationships between carers and those for whom they care. Finally, the entry shows how the different ways that care works in families and in communities challenge taken-for-granted assumptions about what care ought to look like and where it should take place. Overall, the entry illustrates that care varies greatly across social contexts. Anthropology distinctively illuminates how deeply these variations change the experience and consequences of care in ways that require our detailed attention.

Introduction

Humans sustain each other’s lives through giving and receiving care. We often think of acts of care—such as a primary caregiver looking after a child—as central to what it means to be human. Such relationships of dependence, support, and sustenance are, indeed, universal—something we necessarily find in all societies. But precisely because care is a relationship, rather than a biological quality of individuals, this universal varies along with other forms of social variation. Societies imagine, structure, and practise caring relationships so differently as to create significant differences at the level of who has responsibility to provide care, who is seen to need and to deserve it, and what care aspires to do and be.

Policies, philosophies, and practices are often founded on universal assumptions about what care is and ought to be. States may cut welfare on the basis that it can and ought to be provided by families. Clinicians can care for patients with the idea that the best, even only, thing they can do for them is to cure them. Families may give women the responsibility to care on the basis that they are supposedly ‘naturally’ inclined to do so. Paying for care can be regarded suspiciously when people hold that care ought to emanate from personal and sentimental concerns, rather than instrumental ones. Informal care might be judged as inadequate on the basis that it lacks the expertise and rigour of professional forms of it. We have a panoply of ideas about what, where, how, and by whom care is to be provided—ideas that we often take to be natural, universal, and immovable.

This entry explores care in its different guises, in order to see more expansively what care means around the world, to illuminate its diversity and to question our assumptions. Anthropological work on care demonstrates how many dominant assumptions about care arise from specific ways that care is structured in contemporary Euro-American capitalist states. It shows that such assumptions do not help us understand how care appears in other societies, and risk blinding us to the complexity of caring relationships within Euro-American societies themselves. Anthropological studies of care thus illustrate that to understand the actual role of care in human life, we must expand our imagination about what, where, and how it is given.

Structures of care

Nation states and economic markets play a central role in distributing and regulating care in contemporary societies. They function to define who is worthy of care, who should be responsible for giving it, and the contexts in which it is given. Attending to these diverse ways of structuring care reveals how different they are from one another—and thus the significant effect they can have on the kind of care people receive and, in some cases, on the possibility of receiving care at all.

Capitalist economies typically connect care work and dependence with the private sphere as opposed to the public sphere of the market and politics. Relatedly, care is often held in these contexts to be a natural feminine activity while the independent ‘breadwinner’ is regarded as traditionally male (Ferguson 2015; Fineman 2005; Held 2006). A large amount of care work is thus performed by female kin within households and receives no fiscal compensation or legal recognition (Fraser & Gordon 2003). When care work is performed by non-kin in exchange for money, it is typically poorly compensated in contrast to jobs more closely associated with the centres of economic and political power (Folbre & Nelson 2000; Constable 2009; Zelizer 2009). Professional care receives little of the social status of other professions and those who perform informal care often occupy even lower statuses – their work receiving stigma and moral scrutiny for its conflation of the sentimental realm of care with economic modes of exchange (Ehrenreich & Hochschild 2004; Glenn 2012).

The structuring of societies according to the values of rationality, independence, individualism, and productive work thus shapes caring relationships in distinctive ways. It often obscures the time, expertise, effort, and costs of ‘women’s work’ and of ‘emotional labour’ in the home and beyond (Hochschild 1983; Abel & Nelson 1990). It also creates the impression that care work is only necessary for specific classes of ‘dependents’ and that it can be confined to specific social contexts (Ferguson 2015; Siebers 2007; Kittay 1999; Fineman 2005; Rivas 2004). Anthropological approaches to care challenge these assumptions by examining how it is actually practised and distributed in people’s daily lives. They also demonstrate that such socio-cultural and gendered assumptions about care nevertheless continue to determine how care is distributed in different societies (Zelizer 2009).

States and markets

No nation state has ever fully taken on the responsibility and fiscally compensated for all forms of care. Kinship, charity, community-based and privately financed care continue to play a vital role. Contemporary European welfare states, especially those in Scandinavia, have taken on probably the most responsibility for care within human history in their provision of expansive welfare payments for parental leave, child support, disability care, and elderly care as well as free healthcare. In such countries, kin are less often expected to provide care without state compensation, while the state also offers extensive alternatives for people to be professionally cared for by non-kin (Altermark 2018). This kind of expansive welfare government is accompanied by active intervention into the care of citizens through medical, psychiatric, and public health institutions (Foucault 2009b; 2009a; 1975). Such state intervention in turn generates classifications of certain classes of citizens as more ‘vulnerable’ than others.

Among developed capitalist countries, the US offers a stark contrast to Scandinavian states. The American state takes on far less responsibility for the care of its citizens, most notably in relation to healthcare and long-term nursing care. Organisations that provide long-term care for the elderly are typically owned and run privately, and are thus often beholden to logics of profit-making (Diamond 1995). Meanwhile, healthcare is largely funded through payments to private health insurance companies, who have ample legal room to evade the responsibility to actually provide care to many of those who would seem to need it. For example, when clinicians and potential patients claim to need support for eating disorders such as bulimia and anorexia, insurance companies can justify their refusal by reclassifying the very diagnostic symptoms such people initially use to make their claim to dependence as, instead, a wilful refusal of self-care (Lester 2019). Clinicians, operating within this mode of financing healthcare, can only obtain care for their patients by framing their conditions in the categories that insurance companies recognise as legitimate. Their clinical evaluations of patients thus become infused with insurance logics (Lester 2009; Brodwin 2013; see also Davis 2012; Biehl 2005).

In spite of this largely market-based approach to care, the American state is no less involved in its citizens’ lives. It makes ‘caring’ interventions through other institutions such as the military, justice, and carceral systems. War veterans, for instance, are entitled to kinds of healthcare assistance comparable to a comprehensive European welfare state (Wool 2015; Zogas 2021). Once someone with a mental-health disorder has committed a criminal offence, US courts can authorise otherwise-prohibited interventions in their lives to wean people off addiction or provide them with access to housing (Brodwin 2013; see also Cooper 2018). Prisons play a similarly unexpected role in providing healthcare to incarcerated pregnant mothers, making medical and emotional care simultaneously more available to some lower-income women of colour at the same time as entangling it with logics of incarceration (Sufrin 2017; see also Foucault 1995).

The opposite of this situation can also occur. States may attempt to maintain the idea that they are intervening to protect their citizens while, in reality, unburdening themselves of any responsibility to do so—often by bureaucratically distinguishing between supposedly legitimate and illegitimate forms of dependence (Foucault 2008). As Ukraine reeled from the Chernobyl explosion, the socialist and then post-socialist government was faced with unprecedented claims upon state assistance. It used biomedical institutions in order to reclassify people’s radiation damage as the result of an alternative condition that entitled citizens to nothing (Petryna 2013; see also Phillips 2011). When China introduced expansive new legislation to provide economic support to those with disabilities, the bureaucratic means for becoming certified as disabled turned out to be so complicated that few were able to claim it (Kohrman 2005).

A neoliberal logic, where governments redistribute responsibility to citizens by actively encouraging them to care for themselves (Foucault 2008), is present across many kinds of state intervention. This logic can make it easier for state institutions, and even families, to classify those who depend extensively on others, such as chronically ill or ‘unwanted’ populations, as ‘abnormal’—with the consequence that they may end up neglected in ‘zones of social abandonment’ (Biehl 2005; see also Marrow & Luhrmann 2012). Even the most well-meaning and charitable attempts to help those abandoned to these settings can unwittingly replicate the demands of neoliberal forms of government for citizens to take on more responsibility for their own care—rather than criticising the state for not providing it (Zigon 2010).

Humanitarianism and migrant care labour

Care is not confined to the borders of nation states, as humanitarian aid distributes it across regions in light of sharp global economic inequalities. States, together with non-profit organisations, make decisions about which populations in other parts of the world need, or are deserving of, humanitarian care. Much state-sponsored humanitarianism is shaped by ideals of a shared universal humanity that requires intervention to rescue and care for suffering victims. This logic can depoliticise the inequalities that produce such suffering in the first place (Beckett 2019; Feldman & Ticktin 2013; Ferguson 1994), creating unintended similarities between contemporary efforts and ideologies of benevolence underpinning colonial ‘civilising missions’ to reform those deemed vulnerable, deficient, suffering, or sick (Englund 2006). Lisa Malkki (1996) highlights how the category of ‘the refugee’ in programmes of humanitarian care for Hutus in East Africa reduces the complex identities and political subjectivities of those being ‘helped’ into a static, homogenous category of de-historicised victimhood. Similarly, children in conflict settings may come to be represented as fundamentally innocent and ‘needy’ through infantilising and at times futile ‘gifts of care’, such as hand-knitted toys (Malkki 2015).

A similar logic plays out when it comes to migrants and refugees at European state borders. The contemporary French state’s rhetoric of humanitarian care plays a role in categorising only certain undocumented migrants (sans-papiers) as vulnerable and ‘morally legitimate’ care-recipients—for instance, those who are sick or victims of sexual violence. This distinguishes them from migrants who might have been disenfranchised in other ways (Ticktin 2011). Such selective compassion by the state to care for specific bodies is a distinct political logic, one that may render issues of care apolitical and forecloses the possibility of contestation (see also Fassin 2011).

Global inequalities also shape, and are reinforced by, the international distribution of migrant care labour. Such labour is disproportionately performed by immigrant women from lower-income countries who move to engage in low-wage employment in the domestic and care work sectors of higher-income economies (Ehrenreich & Hochschild 2004; Glenn 2012; R. S. Parreñas 2015), such as from the Philippines to Hong Kong, Mexico and Central American countries to the US, and South Asia to the Gulf states. Precarious livelihoods in migrants’ countries of origin and aspirations to care for family futures often motivate these journeys abroad, while households in wealthier countries outsource care work to migrant women as sources of cheap labour.

Migrants may lack the legal rights of citizens in ways that are entangled with the marginalisation of care workers and care labour more widely. When migrant women enter into these already precarious and vulnerable forms of labour, their experience of this gendered devaluation of care intersects with their discrimination along the lines of class, race, and citizenship (Constable 1997; Rosenbaum 2017; Muehlebach 2012). This ‘global care chain’ has knock-on effects on women’s families in their country of origin, requiring them to find other kin or paid carers to take over caring responsibilities in their absence (Hochschild 2001).

The ethics of care

Political and economic logics distribute responsibility for care in such a way as to produce its presence or absence in different settings. How do people relate to one another within caring relationships themselves? What does care look like and involve in practice?

Ethics of care in professional settings

Many forms of health and social care now place a high value on autonomy, consent, and patient choice as they move away from paternalistic models. This ‘logic of choice’ (Mol 2008) limits many forms of caring intervention based on the authority of professional expertise. Social workers in the US bound by these values of autonomy cannot intervene in the lives of those with drug addictions and mental health problems, even when they find people sleeping in the snow without a blanket (Brodwin 2013). The logic of choice creates particular problems for those who need care when their mental capacity to choose is affected by conditions such as dementia, intellectual disability, or mental health problems (Driessen 2018b; Marrow & Luhrmann 2017). Many forms of care exist precisely because people are judged to be incapable of choosing for themselves—but strict adherence to a logic of choice leaves no room for this kind of intervention (Pols, Althoff & Bransen 2017).

Actual caring relationships tend to work in far more complex ways than the logic of choice, and its binary division of paternalism from autonomy, allows. In practice, many caring relationships work through constant intervention in the life of the care-recipient—some of which are paternalistic, and some of which can less easily be classified in this way (Mol, Moser & Pols 2010; see also Kittay 2007, 2019). Chinese parents, for instance, ‘tinker’ (Mol 2008) behind the scenes to create conditions that will be conducive to their children succeeding in a highly competitive economy, in order to avoid directly commanding their already stressed children (Kuan 2015). And many contemporary Euro-American forms of care try to combine intervention with freedom through different forms of pedagogy or persuasion (Pols 2006; Ochs & Izquierdo 2009; Driessen, van der Klift & Krause 2017; McKearney 2021).

Logics of care contrast, also, with another important standard within medical institutions: the goal-oriented focus of curing (Kleinman 2015; 2013). The role of such care comes into focus in settings where curing is not possible—such as in end-of life care (Kaufman 2014; Pols, Pasveer & Willems 2018; Shield 1988). Julie Livingston shows how, when doctors in resource-deprived hospitals in Botswana have little hope of curing their patients, they carefully attend to dressing wounds, managing pain, and providing emotional support (see also Kleinman 2009; Street 2014). They practise medicine as a form of solidarity with the sick—a care that exceeds standard biomedical forms of evaluation (Chambliss 1995). Medicine’s funding and regulation with the ideal of curing leads many in medical professions to miss the centrality of care to their own work, and to other people’s moral projects—as, for instance, when clinicians in the US misrecognise how parents pursue meaningful lives for their critically-ill children despite the improbability of curing them (Mattingly 2010; 2014).

The relational and hard-to-measure qualities of care often make it hard to justify in quantitative or economic terms. Interventions that work through the solidary logic of caring– such as long-term psychotherapy—often receive less funding (Lester 2019; Luhrmann 2001; Davis 2012). The impossibility of economically justifying long-term support for those with those mental disorders that incline them to reject care can lead clinicians to identify such patients as ‘incurable’—even when there is no strictly clinical reason to do so (Davis 2012; Lester 2009). A focus on such impersonal quantitative outcomes in the Canadian government’s response to a crisis of Inuit suicides ignored the sources of and the solutions to the crisis among the Inuit themselves, who see life as inherently bound up with relations of care with ancestors and relatives (Stevenson 2014).

Relations of care produce outcomes that the logics of choice and cure miss. A focus on autonomy can have the effect of wearing our relations thin, to the point that changes in cognitive capacity end up spelling social death (Biehl 2005; Cohen 2000; Marrow & Luhrmann 2012). Instead, a focus on relations of care can build sustaining ties between us as social beings (Taylor 2010). Athena McClean (2015) demonstrates the concrete effects of taking such hard-to-measure logics of care seriously by contrasting two long-term dementia care homes in the US: one which primarily treats care as an instrumental task, and the other as a relational form of solidarity. She demonstrates that the latter maintains not only the dignity but also the cognitive capacities of those in receipt of care—producing also far fewer incidents of conflict or distress.

It is for this reason that feminist scholars writing about the ‘ethics of care’ have long advocated for placing concerns about care at the centre of our moral imaginations and as integral to public and political life. They take care to be a relational practice that refers to all that people do to maintain, continue, and repair the world in which they live (Tronto & Fisher 1990; Tronto 2009).

Challenging moralities

Caring relationships that operate outside of the logics of cure, choice, and the market do not all look the same. Around the world, care takes many forms that challenge our moral intuitions about what it should look like—disrupting, in particular, the dichotomies we hold between good care and its opposites (Duclos & Criado 2020; McKearney 2020).

Professionalism, instrumentalism, and commodification are often set against the moral and emotional qualities we typically associate with care—of sentiment, connection, and warmth (see H. Brown 2010: 129). But, in practice, contractual relationships of care are frequently sites for human intimacy, connection, and flourishing. In the context of paid eldercare work in the US, precariously employed immigrant women who perform this work develop meaningful, if ambivalent, relationships with the older people they care for. Care is thus generative both of inequalities and of new forms of personhood, interdependence, and relatedness (Buch 2018) and thereby of moral engagement. Rather than telling a story about love or intimacy versus money, anthropologists have demonstrated how different ways of relating emerge in and through their very intersection. This has led them to question the assumption that a capitalist world is necessarily marked by a ‘lack’ of care (Constable 2009; Gutierrez Garza 2019; Zelizer 2009).

Some professional logics of care try to restrict these possibilities of intimacy. But other organisations deliberately use these possibilities to enable closer forms of personal connection for those whose dependence can deprive them of it (McKearney 2017; 2018; Marrow & Luhrmann 2017; Nakamura 2013; Kulick & Rydström 2015; Haeusermann 2018). These possibilities for human connection can also be important to care-givers, especially when their work is stigmatised and reproduces their social exclusion more widely (Muehlebach 2012; Rivas 2004). In Singapore, Filipino migrant nurses who might initially be rejected by their Chinese patients for being of ‘different skin’ can later find ways to connect with these patients through personal connections such as a shared religious orientations (Amrith 2017). Such everyday affective, intimate, and material exchanges within care work can constitute a form of political belonging for migrant carers, especially in the absence of formal citizenship rights (Coe 2019; see also T. M. Brown 2011).

The idea that care must take a particularly involved form of empathetic engagement does not hold everywhere (Otto & Keller 2018; Mezzenzana 2020). The warm and sentimental relationality we often associate with caring for another may be taken to get in the way of ‘good’ care. In Thailand, care is a matter of practical work, bodily ritual, and karmic morality. Here, care as the concrete, habituated, and mundane act of providing for others decentres more abstract, sentimentalised and morally loaded notions of care that have long dominated in Europe and America (Aulino 2016). Don Kulick and Jens Rydstrom (2015) demonstrate this in their study of carers in Denmark who support people with disabilities to have sexual encounters. These carers do not try, themselves, to be visible and involved. Instead, they aim to turn themselves into mere background influences—as do many carers supporting those who rely on extensive care throughout their daily lives (Rivas 2004; Stacey 2016; Buch 2018). At the other end of the spectrum, ‘warmth’ can arise in elderly care even when it is mediated by ‘cold’ objects like robots, as is the case in the Netherlands (Pols & Moser 2009; Mol, Moser & Pols 2010). Intimacy may similarly arise even in the apparent absence of human care relationships. Against the grain of popular discourses in Japan, which presume that elderly people living alone are socially abandoned, older adults can find their own ethical practices for living meaningfully in later life through daily rituals making offerings to departed ancestors (Danely 2015).

Control, confinement, and aggression are often imagined to stand in direct contrast to care. Anthropologists, by contrast, show how they can be central to the form that care takes in reality (Foucault 2009a; Johnson and Lindquist 2020; Mulla 2016). In many contexts, violence and deception do not compromise the purity of a more sentimental care but are instead central to how people imagine and practise good care (Brown 2010; Garcia 2015; Livingston 2012). In India, clinicians care for those with schizophrenia by hiding information about the diagnosis from these individuals, and enlisting the support of the family to regulate and control the care-recipient (Marrow & Luhrmann 2017; see also Luhrmann 2007). These paternalistic dynamics within and beyond the family may well be a key of part of the explanation as to why schizophrenia takes a far less severe form in this context. The line between abusive and affirming forms of care is thus much less clear, in practice, than our ideals of care may suggest (Garcia 2010; 2014). In these studies of alternative forms of professional care, hierarchy, paternalism, control, or detachment are not such grave dangers to the person as we often imagine. Rather, they are part of different ways of understanding what it means to be a person, to be cared for, and to be respected. These alternative caring ethics can have remarkably positive outcomes for conditions that mainstream Euro-American care struggles to handle, such as mental illness, dementia, intellectual disability, and addiction.

Care, kinship and communities

The majority of care around the world is still provided outside the direct purview and funding of the state and its institutions, within families and in communities. During the latter part of the twentieth century, many states closed long-stay institutions and shifted away from centralised hospitals on the idea that care is best provided in the ‘community’ (Horden Smith 2013). But this modernising narrative glosses over the fact that families and ‘communities’ rarely fit the imaginations of policy-makers and vary considerably in the way they distribute care.

Families are a primary site through which caring obligations are distributed—kinship roles themselves often being defined, in part, through one’s obligations to or entitlements to care at different life-stages (Goody 1971). But there are profound differences in normative cultural patterns about what families should look like, how care should be distributed within and beyond them, and what ought to constitute proper care. Children, in some contexts, may not have a single dedicated caregiver, nor any dedicated caregiver at all (Otto & Keller 2018), nor are they always regarded as the responsibility of parents in a concrete way, in no small part because they may not be defined as vulnerable to begin with (Lancy 2014). Children as young as five among the Runa of the Pastuza region in the Ecuadorian Amazon are left to look after themselves in very practical ways through building shelter and acquiring food on their own (Mezzenzana 2020). The Runa consider leaving children to their own devices as the best way to let them learn self-reliance, concern for others, and a capacity to manage themselves. This is connected to the self-reliant ‘obstinate individualism’ of the region, in which each person is their own responsibility and no one else’s (Mezzenzana 2020). Such alternative forms of childcare do not just challenge how childhood can be imagined; they also affect the extent to which adults are required to provide care and to which children can care for themselves (Ochs & Izquierdo 2009).

Kinship-care goes far beyond the nuclear family. There are many configurations of kinship that involve a different set of characters in providing care: grandparents, changing romantic partners (Zelizer 2009), or non-genetic close connections who may be described as kin (Edwards & Strathern 2000; Pande 2015). Domestic work by non-kin, more or less assumed into a family structure, has a long and continuous history (Delap 2011; Ray & Qayum 2009) as does the adoption of non-kin. In some societies, the very definition of a partner, parent, or child may not be a permanent genetic or legal bond (Sahlins 2013; Conklin & Morgan 1996). Kinship can also be created through acts of care; for instance, the day-to-day sharing of cooked meals in Langkawi in Malaysia (Carsten 1997; see also Parkes 2005). In these cases, kinship is often not defined at birth but rather is built between people through repeated transfers of care and exchanges of substances such as food or bodily fluids (Carsten 1989; 2000; Stasch 2009).

Kinship roles can also follow a more prescribed and structured set of normative expectations that concretely shape caring responsibilities. In rural Uganda, patrilineal family structures shape the different kinds of grandparental care that sons and daughters’ children receive (Whyte & Whyte 2004). In many South Asian families, one’s status as a child of one’s parents continues to define the care one receives and gives throughout the life course. Parents frequently refer to their adult children who have not yet married as bacche, ‘children’ in Hindi (Mody 2020a). Parental intervention in the sphere of marriage may also be seen as legitimate well into adulthood. The forms of pressure that it may take to make children conform to a parent’s decisions on suitable marriage partners are often expressed and justified through a language of care. Marriage-decisions gain part of their importance from the role that daughters-in-law play in providing care to their parents-in-law (Lamb 2000; Marrow & Luhrmann 2017).

These forms of kinship can give a stability, givenness, and intimacy to the kinship bond that makes the transfer of care obligatory and uncalculated. But that does not mean that care’s role in kinship is stable even in these contexts. One’s role shifts across the course of the lifetime with gendered transitions through childhood, adulthood, and elderhood (Goody 1971; Faubion 2001). The expectations of care that such transitions bring are negotiated and contested extensively. When kinship takes the burden of care, it is typically a weighty, complex, and fraught affair (Mody 2020b; Pinto 2014; Trawick 1990; Reece 2020).

Social and political changes brought about through processes of urbanisation and globalisation can also re-configure the role of kinship in caring relationships. Popular narratives in India lament the demise of the ‘Indian joint family’ to stress the importance of what they see as the legitimate way to look after elders: by caring for them within that familial context (Cohen 1992). But international migration from India has led to the growth of novel care arrangements: privatised eldercare homes and local care services as an alternative, or complement, to kinship care for elders who stay in India while their kin live abroad. A closer look at the lives of people living in these communities demonstrates that care homes are not merely impositions of Euro-American models but are culturally legitimate spaces for middle-class diasporic Indian families (Lamb 2009). In low-income settings in Sub-Saharan Africa, while the care of children, elders, and those with chronic health problems is often undertaken by family members, migration, urbanisation, and increasing inequalities constrain the capacities of households to care. Family care then becomes a dynamic space within which people do not only act according to emotional or moral obligations, but according to the resources available (Reece 2020; Read & van der Geest 2019; see also Han 2012 for an example from Chile). In Ghana, when family care becomes less viable on its own, other spaces such as church become important to providing health and social care, as well as acting as a form of ‘fictive’ family (Coe 2019b). Meanwhile, those living with HIV/AIDS in Uganda, may find new ‘(quasi) relatives’ among health workers, volunteers, and strangers who are seen to be more trustworthy than family members (van der Geest, Dapaah & Kwansa 2019).

Among families rendered transnational through global care chains, creative care arrangements challenge normative understandings of what a family should look like. Care amidst family separation can be mobilised as an intergenerational resource and form of solidarity. Nicaraguan transnational family life draws extensively on extended kinship networks, while grandmothers and grandchildren who care for each other in these contexts challenge constructions of those ‘left behind’ by migrants as passive care recipients (Yarris 2017). Care at a distance is increasingly mediated by digital technologies and expressed through remittances, gifts, and goods, while the ‘family’ itself may involve multiple actors, including paid care workers, distant relatives, and neighbours (Hromadžić & Palmberger 2018; Ahlin 2020; Baldassar and Wilding 2020). Transnational care challenges the distinctions between family, paid, informal, professional, communal, and state-based care, demonstrating the interconnection between all these categories.

The expectations within policy about where care is to be performed, and by whom, are influenced by and reproduce the legal recognition of only certain types of relatedness as legitimate. But care often exceeds these classifications. The narrow confines of kinship categories deployed by the state and the law are frequently rooted in biological or heteronormative assumptions and thus often exclude other forms of partnership, intimacy, and mutual care (Weston 1997; Dave 2012; see also Strathern 2005). Gay and lesbian relationships, for example, may not fit into many legal definitions of kinship precisely because they are founded upon the very idea of ‘caring and being cared for’ (Borneman 1997).

In other contexts, kinship’s importance can be exaggerated. Migrant care workers’ absences from their families are often framed by state and public discourses as having damaging impacts on heterosexual family structures (Manalansan 2008). However, this narrative overlooks the novel caring relationships based on love, intimacy, and friendship that migrants develop in communities abroad that go beyond kinship categories yet remain deeply significant to their experiences and identities (Johnson & Werbner 2010; Liebelt 2011).

Religious, political, and ethical movements also decentre kinship by structuring distributions of care beyond the family. Religious groups can create relationships of care and compassion between previously unrelated social groups and social concerns (Copeman 2009; Evans 2016; Kertzer 1980; Mair & Evans 2015). Christianity, for instance, created new forms of spiritual kinship within the church—most strikingly in monastic communities where people renounced existing relations and future marital prospects to form new kinds of brotherhood and sisterhood in Christ (Brown 1988; Banner 2014). These alternative moral imaginations created new categories of dependents worthy of care (such as children and the ‘poor’) as well as social practices and institutions to distribute care to them—many of which have decisively influenced the shape of contemporary forms of charity, healthcare, and education (Bakke 2005; Brown 1980, 2002; Scherz 2014).

Contemporary small-scale intentional communities can distribute responsibility for care within more limited and controlled environments—whether that be for those with dementia, intellectual disabilities, or the environment (Haeusermann 2018; McKearney 2017; Schiffer 2018). There is also increasing interest in how caring communities extend beyond the boundaries of humanity, both historically and in this age of climate change. One example is the relationship between orangutans, their local human caretakers, and the wider environment in rehabilitation centres in Sarawak (J. Parreñas 2018). Contrary to (post)colonial practices of conservation that are based on establishing control over other species and the environment, orangutans and their caretakers are embedded in a relationship of interdependence and shared vulnerability (through, for instance, land dispossession).

Volunteering can also be an important space for providing care and creating communities. In Greece, as people struggle to access national healthcare in times of economic crisis, networks of community-based clinics/pharmacies have emerged to redistribute donated medicines and provide care through networks of volunteers. These forms of care as social solidarity reanimate Greek citizenship, since it becomes a key location for caring relationships, instead of the family or the state (Cabot 2016). Similar kinds of solidarity can be found in Northern Italy in the context of austerity and diminishing state support. Here it is pensioners who take on the voluntary work of caring for each other, helping those more vulnerable in their neighbourhoods with their shopping, medical appointments and providing them with companionship. This unexpectedly correlates with a denigration of other forms of care, so that when migrant domestic workers in these regions provide similar kinds of care for little pay, their labours are ignored or stigmatised as profit-seeking (Muehlebach 2012). Such community-based caring solidarities are then bound up with questions around what kind of care is visible, and who or what is excluded from the moral framings of these movements.

Conclusion

Social relationships offer the possibility of sustaining another’s life, and of being sustained beyond what one is capable of. If these relationships are necessary for individuals and societies to survive, they are also as variable and open-ended as human life itself. When we attend to the vast diversity of meanings and practices of care around the world, many of our assumptions about it crumble. When care manifests as connection, asymmetric dependence, coercion, refusal, belonging, affirmation, desire, and neglect, all at the same time, we are forced to question what constitutes good care, and how clearly we can separate it from what we assume bad care to be. When we explore how care is structured by different social mechanisms, from kinship to the welfare state, we must take a much wider view about who provides care and in what settings. Within a globalised world of different economic regimes, we see how care is unequally distributed within and across societies, producing ambivalent and uncertain forms of intimacy and relatedness. In its everyday expressions, what care looks like in practice does not always fit in with the rigid pre-established normative ideals about how it ought to be. A detailed look at how care takes place outside of state and market overturns any easy or simple ideas about what care in the ‘community’ looks like and about how caring roles are taken on and negotiated. Care is a human universal. But humans universally structure, practise, and imagine it differently, creating vital differences to people’s lives.

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Note on contributors

Patrick McKearney is a Research Associate and Affiliated Lecturer at the University of Cambridge. He is editor of two special issues on cognitive disability in Medical Anthropology (2021) and The Cambridge Journal of Anthropology (2018), and writes, researches, and teaches on care, ethics, religion, disability, psychology, and personhood.

Dr. Patrick McKearney, Department of Social Anthropology, Free School Lane, Cambridge, CB23RF. pm419@cam.ac.uk

Megha Amrith leads the ‘Ageing in a Time of Mobility’ Research Group at the Max Planck Institute for the Study of Religious and Ethnic Diversity. She is the author of Caring for strangers: Filipino medical workers in Asia (2017, NIAS Press) and has research interests in migration and care work.

Dr. Megha Amrith, Max Planck Institute for the Study of Religious and Ethnic Diversity, Hermann-Föge-Weg 11, 37073 Göttingen, Germany. amrith@mmg.mpg.de

Metrics

Felix Stein — Wed, 14 Oct 2020 08:44:52 +0000

Marlee Tichenor

University of Edinburgh

Initially published 14 Oct 2020

http://doi.org/10.29164/20metrics

Abstract:

Numbers, enumeration, and the quantification of contemporary life seem to govern our existence more and more. Particularly since the dawn of the twenty-first century, the importance of quantification for governance has grown, and anthropologists have increasingly turned their attention to the ramifications of metrics, or numeric representation that translates assumed realities into numbers (Rottenburg & Merry 2015: 2). They study whether and how the production, synthesis, analysis, and use of metrics is tied to the rise and decentralization of audit and accountability in contemporary capitalism. This entry will first provide a theoretical framework for the anthropology of metrics, drawing on science and technology studies and the history of science. Then, it will discuss how anthropologists have analysed the social impact of enumerative practices. Looking at the practices and infrastructures that produce metrics and that metrics in turn produce, this entry will highlight the importance of colonial legacies for shaping what is ‘knowable’ in the realms of global governance, economics, and health. Finally, the entry will point to tensions at the heart of contemporary critiques of metrics: in our ‘post-truth’ world, these critiques cannot reject the usefulness of truthfully describing and estimating human phenomena. However, these critiques foreground the idea that metrics are always just one form of evidence among many.

Introduction

Since the dawn of the twenty-first century, the importance of quantification for governance has gained momentum, and anthropologists have increasingly turned their attention to the ramifications of numbers, enumeration, and the quantification of contemporary life. As historians and philosophers of science and technology have made clear, statistics, and the rendering of the world into numbers, have long played a fundamental role in the rise of the modern nation-state (Foucault 1973; Porter 1990; Hacking 1990; Desrosières 1998; Scott 1998). For example, quantification practices co-created the notion that ‘populations’ existed and could be governed from above (Foucault 1973; Scott 1998). Thus, numbers have long contributed to giving meaning to various aspects of modern and contemporary life. What is new in recent decades, however, is that the increased use of metrics has led to ‘new forms of global governmentality’ (Shore & Wright 2015: 22). This means that our lives are increasingly governed by numbers and numerical surveillance – not only those used by nation-states, which have long used numbers as a means of governing from above, but also by non-state forces. In this way, these metrics increasingly define what it means, for example, for educational or health institutions to be effective or for individuals to be healthy and happy.

Metrics, or the standard means of measuring or evaluating processes and phenomena for the purpose of governance, are the ‘translation of (assumed) realities into numbers’ (Rottenburg & Merry 2015: 2). Their production, synthesis, analysis, and use are tightly tied to the rise of audit and accountability in contemporary capitalism, where governing practices such as assessing corporate sales performance or student achievements become more decentralised (Power 1999; Strathern 2000). These numerical representations are often presented as objective truth, yet they are produced through technical and social practices that are always at least partially specific. Most statisticians and data scientists producing quantified data and syntheses of, say, ‘gross national products’ or ‘burdens of disease’ know that there are many reasons for why these simplified metrics are not perfectly objective. This can be due to a human element of designing and implementing surveys, unclear or distorted categories in which data are placed, missing data, changing statistical equations, and statistical uncertainty. However, because these subjective components can be neatly packed away when metrics travel, the power they have in determining national budgets, international funding flows, social justice claims, and so on, is considerable.

The metrics discussed here are not merely numbers, which have multiple points of historical and geographical origin. Instead, they are the indices, indicators, statistics, and biometric standards used on the part of governments, international and non-governmental organizations, private companies, and governance scholars. They are meant to be replicable and universal, creating comparability between different countries, economies, corporate entities, or populations. According to Vincanne Adams (2016), these metrics were born out of a desire in the West to aspire to the universal, as well as out of the rise of statistics that occurred simultaneously with the ascent of the modern nation-state, serving ‘as the invented conceptual counterpart to the hubris of the age of imperialism’ (Adams 2016: 20). The anthropology of metrics investigates the politics of evidence, analysing why certain numerical forms, whether crime rates or funding flows, are taken as legitimate over other (less numerical) forms. It also pays close attention to the ways that counting practices and their associated categories can produce the very phenomena that they are supposed to measure. This can occur when sorting and separating phenomena into categories that come with built-in theories about the world – like degrees of ‘development’ or economic prosperity. Here, specific notions of what makes a good life are suggested and perpetuated by acts of measurement. The proliferation of indicators and rankings is thereby ‘creating new forms of power and governance, and new kinds of subjectivity^[1] (Shore & Wright 2015: 22), as institutions and individuals are assumed to be appropriate entities for external audit and governance through numbers. This includes how universities in the United Kingdom, for example, are now ranked specifically by the quantified impact of research by the Research Excellence Framework, which has material effects on their funding and the focus of their activities (Stein 2018).

Some authors have included the ways that numbers and counting practices have wide and varied symbolic and practical meanings in different cultures within an ‘anthropology of numbers’ (Crump 1990). Most of the anthropology of metrics, however, focuses specifically on the use of numbers, statistics, and counting technologies in the practice of governing, at different scales of human experience. This entry will first provide a theoretical framework for the anthropology of metrics, which stands in conversation with science and technology studies (STS). Anthropologists of metrics both contribute to the larger interdisciplinary STS conversation and speak beyond it by using their discipline’s particular methodologies, including ethnography and participant-observation. They investigate infrastructures and practices of measurement and they pay close attention to how these impact the lived experiences of both practitioners and targets of technologies of measurement. For example, numerical surveillance on the cellular level – like counting the quantity of virus in a given amount of bodily fluid – has become a language that some living with HIV/AIDS in Miami, Florida use to describe their ‘suffering, personal triumph, and achievement’ and to define their personal experience of risk (Sangaramoorthy 2012: 293). Next, the entry discusses engagements with metrics within the field itself, tracing histories of the impact of numbers and outlining key contributions such as anthropologists’ analysis of how metrics in the realms of global governance, economics, and health shape our lived experience and institutions.

Finally, the entry will point to anthropologists’ ambivalence toward metrics. Although the focus of this entry is on the anthropology of metrics, that is, with metrics and their efects as central objects of study, anthropology is also done with metrics. Applied anthropology in business and development, for example, makes use of both quantitative and qualitative methods. A further ambivalence arises with the conflict between qualitative and quantitative approaches to understanding the world around us. It is reflected in critiques of metrics that argue for the importance of stories over numbers (Moats 2016) or for situated knowledges^[2] over a singular, objective truth (Haraway 1988). Yet, we exist in a world where scientific expertise in general and statistics in particular are being cast by some world leaders as suspect, and where ‘alternative facts’ – an ingenious rebranding of ‘lies and falsehoods’ – become more widely disseminated as official accounts of the effects of climate change, of the origins of gun violence in the US context, or of reasonable public health approaches to the COVID-19 pandemic. In this ‘post-truth’ world, an anthropology of metrics calls for nuance. It does not make the case to end all metrics, but wants to understand them better so that they may actually enrich our lives.

Social sciences of metrology

The anthropology of metrics is situated within a larger social scientific critique of quantification and enumeration. The history and philosophy of science has long attended to the ways that the sciences have aspired to and produce objective representations of world phenomena, situating the development of these practices in particular historical moments and as resulting from a specific trajectory of theoretical thinking. Metrics are part of the effort to create ‘objective’ representations of the world. Lorraine Daston and others categorise three types of objectivity: mechanical, where objectivity suppresses the ‘human propensity to judge and aestheticize’; aperspectival, where objectivity eliminates idiosyncrasies; and ontological, where objectivity brings about a ‘fit between theory and the world’ (1992: 597). Quantification aspires to all three forms of objectivity, producing a rule-bound, un-self-interested, true representation of the world.

Quantification is an exemplary practice of the production of objectivity, as it replaces arbitrariness, idiosyncracy, and judgment by explicit rules (Porter 1992: 633). Quantification is thus in part a ‘technology of distance’, meant to remove all forms of subjectivity. It creates international communities with a common language, and can be used by politicians and institutions to garner the trust of the populations they serve (Porter 1995: ix). The rise of the power of statistics was therefore tied to the rise of the modern nation-state, and by the middle of the nineteenth century in Europe, statistics came to be perceived as the premier means of producing general knowledge for the populace and as a fundamental tool for addressing corruption within the democratic political system (Porter 1995; Merry 2011).

In the rise of the nation-state, statistics were particularly important for producing the concept of population upon which new forms of power could be exerted, as can be seen in Michel Foucault’s concept of biopower. This new form of power was based on new forms of thinking about life and disease in the seventeenth and eighteenth centuries. Foucault argues that, at the beginning of the seventeenth century, the power of a sovereign ruler shifted from the simple power to kill someone (the power over death), to aiming at making populations grow (i.e. exerting power over life). Biopower was born, as a form of power that regulates the individual body and populations at large. According to Foucault, it became the main mode of sovereign power: controlling sexuality, economic life, and personal health, for example, often through the use of statistics. As a result, people’s subjectivities, or the way that they understand themselves in the world and live their lives, began to change. They started to conceive of their bodies as if they were machines, and began adhering to better eating and exercise habits, for example. New intellectual disciplines, like sociology and epidemiology, contributed to these emerging forms of controlling the body. Better knowledge of life and health were also indispensable for the development of capitalism, as the institutions of power that control health are also those that condition bodies to function in the machinery of production (1978: 141). For example, the ‘ideal worker’ became a self-disciplined and regulated self, produced and maintained by social scientific and medical texts about the moral value of productivity and the responsibility of the individual to stay healthy.

Within the context of the medical sciences, the growing influence of physicians was key for developing statistical thinking and ideas of what counts as ‘normal’ and ‘pathological’. Opening up corpses, for example, was pivotal for the production of biopower, as it allowed for a direct comparison between bodies, which in turn facilitated the development of statistical averages against which individuals could be compared (Lock & Nguyen 2010). This comparability and the practice of making things commensurate are central to the work that numbers and metrics do, by putting diverse phenomena into the same category in order to start counting. Importantly, that which may seem quite simple, ‘like how to name things and how to store data’, actually ‘constitute much of human interaction and much of what we come to know as natural’ (Bowker & Starr 2000: 326). Quantification may be a seemingly natural technology of classification, yet as Foucault (2001) has shown, the ranking and separating of countries, institutions, and projects through evaluative indicators and data production have specific histories and always reflect more than mere ‘common sense’.

In the twentieth century, the power of the nation-state became less centralised and all-encompassing than in Foucault’s analysis. Local and international governing agencies increasingly determined people’s everyday lives. This changed the role that quantification took in governance. According to Michael Powers, this decentralisation led to an ‘audit explosion’ (1994) which has been central to contemporary forms of governance since the 1990s. Quantification practices have often themselves become the link between populations and the local, national, or international entities that govern their economic, social, and physical wellbeing. These forms of wellbeing, as well as the accountability of governing organizations to secure them, have become objects to monitor. Practices of accountability – of counting and holding to account – have, for example, become a main mode of instilling trust in institutions which are now are measured against pre-defined quantitative indicators determining their success. This ‘governance by numbers’ has reached new levels with the United Nation’s Sustainable Development Goals (SDG), introduced in 2015, whereby all UN member states are obligated to produce data and monitor their progress across 17 goals and 231 individual indicators (Fukada-Parr & McNeill 2019). Sakiko Fukada-Parr and Desmond McNeill are among the scholars who argue that these indicators ‘have distinctive effects on knowledge (how things are conceptualized) and on governance (behaviour of actors, policy choices)’ (2019: 6). In this way, the means by which the SDG global development agenda is implemented – through the measurement of 231 individual indicators on such wide policy issues as health, education, poverty, and environment – is at the mercy of group consensus on statistical methodologies for how we measure poverty or ill-health, as well as what kinds of quantified data are actually available. What is measurable becomes what is implementable in our global development agenda and in global public policy.

Contemporary metrics-based modes of defining and determining good governance tend to have their origins in New Public Management (NPM), a school of thought that aims to render administrative structures and processes more business-like (Strathern 2000; Hulme 2007). Under the guise of ‘good governance’, they are often aimed at increasing economic efficiency. Thereby, they frequently join together ‘the financial and the moral’ (Strathern 2000: 1), presenting what is financially sound as being morally valuable. Accountability in this way holds its older meanings of responsibility to one’s fellow citizens or those under one’s care, while also gaining new meanings about promoting efficiency and balancing one’s cheque-book. One way of making sense of these developments is to consider them as part of the on-going rise of neoliberalism. In the context of a continued retreat of the state in the neoliberal present, business and finance-based auditing and accountability practices have expanded outward, becoming the means of defining success for medical, educational, and other social services institutions. University rankings incite students to apply to one university rather than another, while key performance indicators increasingly determine public sector budget allocations. Metrics also drive private investment by ranking corruption levels and the quality of life of entire countries. They even evaluate our day-to-day activities, such as our eating habits and exercising routines (Merry 2011: S84; Rottenburg & Merry 2015), designating each of us as a ‘quantified self’ accountable to ourselves and our fellow citizens for our individual and group well-being (Moore 2017). In this way, the governing power of the metric – in the context of global shifts of decentralization and the continued retreat of the state’s responsibility for our wellbeing – has gained the ability to assert new relationships of responsibility, alongside its ability to measure economic efficiency. Thus, much of our social lives is now assessed by managerial techniques of accountancy and performance management that do not just describe what we do but also assert our activities’ moral worth, often with an economistic bent (Shore & Wright 2015).

An anthropology of metrics

Drawing these debates into anthropology, scholars have asked whether the increased use of evaluative metrics has impacted both our societal structures and how we see ourselves. After all, the quality of our sleep or ability to be mindful, and even our societies’ levels of happiness, are closely linked to who we are. Since rankings enable comparability and competition between countries, institutions, and individuals, they have come to be a foundational component of how we situate ourselves and others in the world. It may define our individual sense of success where our university sits on ranking systems, or whether our country is ‘lower-middle income’ or ‘upper-middle income’. Further, indicators and evaluative metrics are a language through which we communicate urgency, morality, and our responsibility to one another, invoking or requiring redress or action. For example, the Bill & Melinda Gates Foundation uses its estimations on global health burden to justify its own – non-transparent – investment in global health (Tichenor & Sridhar 2020). On the other hand, the Programme for Action for Cancer Therapy uses the evocative statement that ‘One woman dies every 50 seconds’ from breast cancer to both advocate for more funding for research and development for treating breast cancer, while also invoking women into action to attend to their own health through screening or genetic testing. In this way, metrics are tools of both the powerful and the resistance, and the viability of metrics is determined by the power structures within which they are produced and amplified.

Anthropologists have tended to study metrics through ethnography. Merry defines this methodology as

examining the history of the creation of an indicator and its underlying theory, observing expert group meetings and international discussions where the terms of the indicator are debated and defined, interviewing expert statisticians and other experts about the meaning and the process of producing indicators, observing data-collection processes, and examining the ways indicators affect decision making and public perceptions (2011: S85).

There has been a rise in the number of ethnographic analyses of monitoring and evaluation practices in the domains of justice, economy, and health.

A. Metrics in global governance

Take the example of global governance, which is a governing system headed by the United Nations and the member-states, agencies like the World Health Organization, and other international organizations like the Bill & Melinda Gates Foundation. Within the system of global governance, countries are evaluated based on their Gross Domestic Product (GDP) or their Human Development Index (HDI), or the World Bank’s newly introduced Human Capital Index (HCI). These evaluations have concrete impacts on what kinds of funding countries can receive from the World Bank or the International Monetary Fund, including the quality of their credit. In global health, countries are ranked based on the quality of their health systems and are provided with funding to fight certain diseases based on their perceived need through a metric known as the Global Burden of Disease (GBD). Yet, the nature of these indicators and the means of their production ‘involves a range of discretionary and sometimes arbitrary decisions’, despite their assumed objectivity and ability to represent reality (Jerven 2013: 4). There are missing data and questionable assumptions, and the debates about what can be counted and what cannot will remain hidden under the final indicator produced.

Morten Jerven (2013) has shown this by spending extensive time in statistics offices in different countries across Anglophone Africa, interrogating how the assumption that most of the ‘least developed countries’ are in Africa is based on partial and often inadequate information. Working with very limited resources and limited data, these statistics offices must regularly produce statistics on Gross Domestic Product (GDP) and Gross National Income (GNI). In order to be ‘legible’ or acceptable, they must reinforce existing assumptions about income levels in-country, assumptions which then help both the international community and government agencies choose where to invest funds in the country.

It is not a trivial matter that GDP is, in this way, created based on existing assumptions that international agencies have about the level of ‘development’ of a country. As Lorenzo Fioramonti (2014: 15) shows, GDP is founded on the idea that ‘that which is not priced, what does not involve formal financial transaction based on money does not count’ toward one’s country’s social or economic wellbeing. GDP has thus given more power to the economy over politics and society. Further, these practices of enumeration and the defining of countries’ levels of ‘development’ or economic prosperity based on metrics have their origins in colonial projects. In the context of the British colonial power in India, ‘exoticization and enumeration were complicated strands of a single colonial project’ (Appadurai 1993: 315). Here, censes, maps, agrarian surveys, racial studies, and other projects of quantification were a crucial component of the categorization and essentialization of the ‘other’ under colonial rule. Metrics contributed to creating Orientalism (Said 1978), which was the process by which Western artists, scholars, and government officials exoticised populations in ‘the Orient’ – or the Arab world and Asia – through cultural and governmental representations of these populations, and which was a necessary and destructive foundation for colonial rule. Defining a country’s ‘development’ or ‘underdevelopment’ based on what is quantifiable and carries a price, and using statistical estimates based on pre-existing assumptions about ‘development’ levels, risks perpetuating the exoticising practices of colonialism. These measurement practices are all the more important as our current geopolitical system is based upon them.

The fact that evaluative metrics often carry with them ideas of financial value that enable the economic valuation of diverse human experiences becomes particularly obvious in development contexts. Gerhard Anders (2008: 187), who has studied the World Bank and the International Monetary Fund’s work in Malawi, calls this normative infusion of monitoring and evaluation the ‘normativity of numbers’. He shows how loans from both organizations came with conditionalities – that is, particular policy requirements attached to them. Conditional loans were meant to reconcile the organizations’ twin goals of respecting country ownership and tackling corruption. They required careful monitoring of particular ‘good governance’ indicators, such as GDP, inflation rate, and average life expectancy.

B. Metrics in justice and education

Within the domain of justice, it has become obvious that indicators exercise power in a variety of ways. They have, for example, been used to bring claims to individual human rights into closer relation with population-based discourses and management of international development, as economic indicators have increasingly been used for measuring and ranking human rights compliance (Merry 2011: 2016). Thus, economists at the World Bank, who have been pivotal for collecting and collating socioeconomic data throughout the world, have promoted the concept of ‘economic rights’, such as the right to an adequate standard of living or to social security, as central to the human rights agenda. Their success illustrates the power of certain indicators over others, based on the resources that they open up or close down. With the considerable economic and governing power behind it, the World Bank can prioritise which kinds of indicators it uses to direct its funding, or how much funding individual countries or organizations receive. It has the power to refine human rights indicators to prioritise the economic opportunities of individuals over other aspects of human life. These decisions affect not just what kind of funding countries may receive, but also how they measure human rights issues within their own borders.

Metrics often shape what is prioritised in our justice and education systems, but anthropologists have also shown that they must be understood in the context of other forms of evidence. Thus, qualitative narratives or other forms of evidence are part and parcel of numeric indicators themselves. Take the example of popular media rankings of quality for law schools. They impact the day-to-day occurrences within those schools by producing narratives that are just as important as the numbers themselves (Espeland 2015). When rankings are reorganised and some law schools are suddenly put ‘below’ others that law students and faculty had previously believed themselves to be superior to, they may provide narratives that try to temper and explain away the new hierarchy. For example, a law school dean may provide a narrative to his students about the ways that the rankings themselves were produced and the fact that they could be impacted, and changed quickly, by limiting class sizes the next year. In this way, rankings create narratives that ‘speak back’ to the numbers. Other examples also show that indicators are not simple and straightforward facts, but that they require qualitative interpretation, a perspective that some South African prosecutors studied by Muegler (2015) have taken. Thus ‘performance measurement systems’ measuring the ‘accountability’ of the justice system to the country’s population in South Africa must be analysed through how indicators and measurement are used in legal cases. The prosecutors’ ‘stat talk’ was always situated in larger understandings of practices of accountability, showing how indicators always must be understood in their larger context.

C. Metrics in health

The anthropology of metrics has traditionally had a strong focus on health. This is linked to the history of colonialism, where measurements of the body, of health, and of illness have been particularly pernicious in producing and maintaining oppressive theories of othering and racism (Arnold 1993; Anderson 2005). This history highlights how important it is that anthropologists continue to analyse the assumptions at the heart of health metrics. Further, techniques of measuring the body or sub-elements of the body have come to stand in for determining health in general, in ways that shape the lived experience of individuals as well as the institutions with which they interact.

In The mismeasure of man, evolutionary biologist Steven Jay Gould (1996) explains how complex human intelligence was systematically reduced to what could be measured with crude tools, such as IQ tests and skull size gauges, and how such unsuitable proxies were used to justify existing social hierarchies. The use of metrics of bodily weight and size to measure individuals’ health echoes this history (Yates-Doerr 2013). For example, obesity has come to be measured through various techniques including waist circumference, body mass index, and bioimpedance analysis. As part of this trend, ‘the public health community has become swept up with the idea that measurements can reveal the interior health of the body’ (Yates-Doerr 2013: 50). A major goal in public health is to find the best tool to provide a quantified value for body fat. In the process of finding more and more ‘accurate’ tools to do so, public health officials and clinicians easily forget the ‘representational quality of numbers’ and allow them to stand in for the concept of health itself. This standardised and metrics-based understanding of health stands in contrast to alternate ways of conceiving of fatness. In Guatemala, for example, where one individual’s corporeality is not necessarily commensurate with another’s, fatness and illness are not considered to be intrinsically linked as they so often are in the public health literature. Here, experiences and attitudes about fatness connote abundance and joy rather than illness or poor health. While numerical representations are not inherently bad, the power of numbers means that ‘other knowledges about bodies become harder to see, and though they certainly do not disappear, they become more difficult for scientists and public health worker to value’ (Yates-Doerr 2013: 64).

Metrics tend to impact those who use them, down to the level of their innermost subjectivity. Enumerative practices around the surveillance and prevention of HIV/AIDS in Miami, Florida, for example, have helped shape the identities – or ‘numerical subjectivities’ – of those living with the disease (Sangaramoorthy 2012: 292). Here, HIV/AIDS patients come to define themselves and how they understand wellness through their viral loads, or the number of viruses within a given amount of bodily fluid. They also define themselves through their CD4 counts, or the number of CD4+ T cells in a given amount of fluid, measuring individuals’ immunity levels. They tie changes in such numbers explicitly to external phenomena, arguing they might change for the better if a favourable health policy was passed. At the same time, statistics co-create how people see the world around them. Thus, the Center for Disease Control uses gathered surveillance data on Haitians living in Miami, classifying them as a ‘high risk’ population that requires extra HIV/AIDS surveillance. This is a legacy of the incorrect assumption that the presence of the disease in the US originated from Haiti (Farmer 1992), and Thurka Sangaramoorthy shows how Haitian-Miamians’ contemporary risk level is based on national statistical estimates on the disease. Previously-held assumptions about these populations being ‘high-risk heterosexual’ populations have made them particularly targeted for surveillance, and as a result of these categorizations, Haitians living with HIV/AIDS in Miami have internalised this externally imposed risk. In opposition to non-Haitians understanding their HIV/AIDS experience through ‘numerical subjectivity’, Haitians living with HIV/AIDS in Miami have been placed in a category of ‘high risk’ by outside forces – a category maintained through statistical surveillance – that has led them to reject these same practices of self-enumeration because of these legacies of discrimination. In this way, categorizations maintained by metrics are imposed externally, but there is always space for rejecting or manipulating them on the level of the individual.

Since global health metrics are powerful tools, they are always a tangle of contentions over epistemological definitions of disease, competition over limited funding from international organizations, and techniques of calculating and modelling proxies for disease. This has been shown in the example of maternal health in Malawi (Wendland 2016). Here, the officially-stated national progress on maternal health, based on a maternal mortality ratio (MMR), stood in painful disconnect to the experiences of physicians at the Queen Elizabeth Central Hospital in Blantyre. The MMR had been estimated in 2010 by the Seattle-based Institute for Health Metrics and Evaluation (IHME), which projected success in the country’s goals for maternal mortality. Yet local physicians observed the same frequency of funeral processions in the maternity wing of the hospital. An analysis of the way that IHME and the World Health Organization produce MMR estimates shows that the metric, in places where maternal mortality data collection is sparse, like Malawi, is, in fact, an estimation of estimations, which in this instance failed to capture reality and risked losing funding for maternal health programmes. At the same time, epidemiologists, statisticians, and demographers have been developing and advocating for better metrics to measure progress in maternal health, asserting that their current forms do not appropriately represent reality (Storeng & Béhague 2017). However, it may be that at the heart of this effort is not so much a desire to represent the world, but one to ‘sell’ maternal health as a priority over other health issues to global health donors. It may well be that health metrics are themselves marketing techniques in a world governed by indicators.

In a world where metrics proliferate but health inequalities persist, one may go so far as to ask whether metrics create value only for a select few (Erikson 2016: 148). Not only are numbers required to give value to past action, but they are also asked to produce ‘future actuarial worth’. Promoters of health interventions among the global health community in Seattle, or Washington D.C, for example, often package their work for investors by providing productions of ‘expected growth’ due to their interventions, providing them a return on their investment (Erikson 2016: 153). Metrics have evolved from being strictly an accountability tool to one to be used to attract and incentivise investment, which we can see in the example of the shift in how the Bill & Melinda Gates Foundation (BMGF) has approached the use of metrics. ‘“Tools of business’ will be the solution to bringing health and welfare to the world’, Bill Gates stated in his 2013 Annual Letter, showing how BMGF has fully embraced the use of metrics to govern global health like a business. These ‘incentivizing financial tools’ have been proliferating at a clip, using modelled and forecasted metrics as a means to show investors which medical commodities are the important ones to support.

One particularly elaborate incentivising financial tool of this sort is the World Bank’s Pandemic Emergency Financing Facility (PEF), which promised large interest rates to investors in the absence of a major pandemic within a three-year window (Erikson 2015; Stein & Sridhar 2017). Using medical expertise as well as that of multinational insurance companies, the PEF’s dispersal of funds for the support of lower- and middle-income country governments and global health agencies is determined by a series of metrics that some have argued are ill-fitting for many potential pandemics (Jonas 2019). This raises the question of whether metrics can be used to incentivise inaction, rather than action in global health. During the COVID-19 pandemic, the PEF was only triggered in late April 2020, when other non-metrics-based funding mechanisms had already been allocated. In addition to fostering inertia, and slowing down the disbursement of aid, metrics like those required by the PEF turn health itself into an object of investment for which actors obtain a financial return (Erikson 2016). This shifts the fundamental measure of success for health interventions from addressing health problems to whether an investor makes a profit, further deteriorating the concept of health as a public good.

Conclusions

This entry has focused on the anthropology of metrics, which analyses the effects of the increasing quantification of our institutions, communities, and selves. However, anthropology’s engagement with metrics as an object of study exists alongside the use of indices, indicators, and statistics for research. Anthropologists make use of or even help produce population-based statistics to provide context for ethnographic studies. At the same time, the UK’s Research Excellence Framework requires that anthropology departments produce performance indicators of the impact of their research, turning its members into both producers and researchers of metrics. Anthropologists sometimes assert that their research output is ‘a form of counterevidence to metrics’, which produces a tension between ‘stories and numbers’ (Moats 2016: 596). They will need to bridge the chasm between qualitative and quantitative ways of representing the world, which exist alongside and in tension with each other (Benton 2012). Rather than arguing against metrics, which is a dangerous thing to do in our ‘post-truth’ world, anthropologists may want to argue for better metrics and the simultaneous use of multiple modes of evidence. Analysing the practices that create metrics, and interrogating their effects, does not stand in for an argument against their use. Instead, it indicates the importance of couching metrics and quantified data within other forms of evidence, in a way that ensures that the assumptions, data sources, and estimations that were used to create them remain clear.

We may today be reaching a point at which the production and consumption of evaluative metrics has reached its peak (Kelly & McGoey 2018). At the same time, our trust in the systems that produce and consume them is at a historic low. In a time where nuance seems to be mostly absent from political debate, debating the validity of metrics feels like a dangerous game. And yet, those who design and implement metrics, and those whose lives are impacted by them, must understand how the dominant categories and measurements affect social life. Based on this understanding, they may be able to decide where measurement is needed and where unmeasured life should continue.

Acknowledgements

This entry is part of a project that has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme, under Grant agreement No 715125 METRO (ERC-2016-StG) (“International Organisations and the Rise of a Global Metrological Field”, 2017–2022, PI: Sotiria Grek). It was also supported by Wellcome Trust [106635/Z/14/Z].

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Note on contributor

Marlee Tichenor is a research fellow in the Social Policy Department at the University of Edinburgh and received her PhD from UC Berkeley and UC San Francisco. She is a medical anthropologist interested in the politics of evidence and data in global health policy and intervention.

Marlee Tichenor, Social Policy Department, University of Edinburgh, Chrystal Macmillan Building, 15A George Square, Edinburgh EH8 9LD. marlee.tichenor@ed.ac.uk

[1] In anthropology, ‘subjectivity’ is used to mean many things, including personhood, the ‘emotional life of a political subject’ (Luhrmann 2006: 345), and the processes by which a ‘modern subject’ is made (Biehl, Good & Kleinman 2007: 1). The concept is used to interrogate the ways by which individuals understand themselves and how this is influenced by social processes and conditions around them.

[2] Along with other feminist anthropologists of science, Donna Haraway has argued that the objectivity touted by natural scientists over the centuries is not a ‘view from nowhere’. She holds that evidence, research designs, and theories have historically been produced from a Western, masculine perspective, and that all production of knowledge must be thus understood to be ‘situated’ (Haraway 1988: 575). Social anthropologists, particularly since the field’s representational turn in the 1980s, have tended to assert the importance of acknowledging the positionality of the ethnographer in the knowledge they produce about different communities.

Childhood

Felix Stein — Thu, 04 Jun 2020 09:17:23 +0000

Catherine Allerton

London School of Economics and Political Science

Initially published 4 Jun 2020

http://doi.org/10.29164/20child

Abstract:

Children, as the youngest members of our species, exist in all human societies across space and time. But societies differ widely in their understandings of childhood as a distinctive stage of the human life cycle. This entry describes anthropological work on childhood as a varying cultural construction, from early comparative studies of childcare and development, through work on the socialization of young children, to more recent ‘child-focused’ research that takes children’s perspectives on their role and position seriously. Anthropological research casts a critical light on institutional attempts to formulate universal understandings of childhood, whether these are found in developmental psychology, the United Nations Convention on the Rights of the Child, or the spread of formal schooling as an essential aspect of modern childhoods. Children, through their participation and observation in social worlds, are always understanding more than they are told by adults, often applying cultural concepts or different languages in innovative ways. This frequently leads children to destabilise or reject wider representations of childhood that reflect adult prejudices, or wider fears about the ‘disappearance’ of childhood or a loss of ‘innocence’. Paradoxically, adult attempts to protect children, whether from work or from societal harms, often say more about the politics of representations of childhood, than they do about children’s actual experiences.

Introduction: children and ‘childhood’

Children, as the youngest members of our species, exist in all human societies across space and time, and descriptions of children’s activities, talk, games, and work appear in many different anthropological texts.^[1] But human societies differ widely in their answers to the questions: ‘who counts as a child?’, ‘what kinds of care and instruction do children need?’ and ‘what knowledge do children have of their worlds?’ The study of these and other questions is part of the cross-cultural comparison of ‘childhood’ as a socio-historical construction that varies widely both across and within different societies.

Anthropological research has demonstrated that there is no single, universal understanding of childhood as a stage of the human life cycle (Montgomery 2009; Lancy 2015). As a result, anthropologists have often cast a critical light on scientific and institutional attempts to make universal pronouncements about children, or to prioritise particular understandings of a ‘normal’ childhood. This includes adopting a critical perspective on developmental psychology as ‘the’ science of childhood.^[2] Most psychological experiments have been conducted with children in what David Lancy (2018) calls ‘WEIRD’ (western, educated, industrialised, rich and democratic) societies. And yet, from the perspective of non-WEIRD societies, such understandings of ‘normal’ childhood are distinctly anomalous. For example, the American psychologist and educator, Stanley G. Hall (1904) defined adolescence as a turbulent and transitional period of ‘storm and stress’, arguing that the physical changes experienced at puberty had a tumultuous impact on young people’s emotional life. By contrast, in Coming of age in Samoa, Margaret Mead disputed this universal picture of adolescent disturbance, asking whether such difficulties were ‘due to being adolescent or to being adolescent in America?’ (1928: 5). Mead’s book painted a picture of Samoan adolescent girls whose lives were full of leisure, and who did not experience conflicts around their sexuality. Her conclusion was that the ‘storm and stress’ of American adolescence had cultural rather than biological causes, telling us more about the anxieties of American society than about children’s universal experiences. Indeed, later anthropologists have argued that the study of children is crucial to understanding key cultural values and conflicts (Hardman 2001 [1973]; Gilliam & Gulløv 2019).

A key, early influence on anthropological approaches to childhood was Philippe Ariès’s Centuries of childhood (1962), in which he argued that European children in the Middle Ages were seen and treated as little adults, lacking separate clothing, games, or spaces. Ariès thought that the very notion of ‘childhood’ as a distinct phase of life did not exist for most of European history. Although Aries’s arguments, in particular his analysis of representations of children in pictorial art, have been criticised,^[3] his central contention – that concepts of ‘childhood’ varied and that European children’s worlds had not always been so separate from those of adults – had a huge influence on the development of ‘childhood studies’. This is a multi-disciplinary field, in which anthropologists have engaged with sociologists, geographers, historians, and others arguing for a new paradigm for the study of childhood as a social construction.^[4]

Not only do constructions of childhood vary across space and time, but childhood also intersects with other variables, such as social class, gender, and ethnicity. It has been argued that economic and social realities influence ways of treating children, leading, for example, in urban Brazil to ‘two distinct forms of childhood’ (Goldstein 1998: 395). Rich children are pampered and spoiled by their parents and by the domestic workers employed to care for them. By contrast, the very children of those workers are hastened into adulthood, working inside the home from the age of 5 or 6, and sent out to do waged work by the age of 9 or 10.^[5] Childhood – in the sense of a carefree time of freedom and lack of economic responsibility – is a ‘privilege of the rich’ in this context (1998: 393). In America, too, social class shapes attitudes towards childrearing and understandings of children’s natures. The lives of preschool children in New York City have been shown to be marked by a ‘hard individualism’ of working-class communities and a ‘soft individualism’ of the upper-middle-class (Kusserow 2004). Whilst ‘hard’ individualism directs children towards tough resilience, self-sufficiency and independence, ‘soft’ individualism emphasises the importance of protecting and nurturing the child as a unique little person. Here, the conception of childhood held by upper-middle-class parents leads them to dismiss the relevance of social class, since they are led to emphasise the uniqueness and naturalness of their young children’s selves.

Socialization: becoming a cultural person

The ‘Culture and Personality’ school of American cultural anthropology, with which Mead is associated, was interested in how culturally-specific child-rearing practices shaped the emotions and personality of children as a cultural beings. Indeed, Mead herself saw the different peoples of the world as a kind of laboratory of child development, in which each culture presented a different set of experimental conditions for the treatment of children. In a short film, Bathing babies in three cultures (1951), made with Gregory Bateson, Mead showed how something as apparently straightforward as bathing a baby could be approached very differently, the method corresponding not only to the environment but also to a culturally-specific training of the young child’s emotions. Cora Du Bois, another member of this school, conducted fieldwork in the late 1930s on the Indonesian island of Alor, describing the impact of caregiving and disciplinary techniques. Relatively unusually for her time, she also analysed children’s drawings, and conducted Rorschach psychological tests. Du Bois argued that childhood experiences were central to the development of the ‘modal personality’, or common personality type, of a particular culture. However, she also acknowledged the significance of innate, individual differences in shaping adult character (1944: 3-4).

The Culture and Personality school’s interest in child development evolved into a number of cross-cultural studies of child-rearing, most notably the ‘Six cultures’ study. This ambitious project utilised a common methodology to compare ‘different patterns of child rearing and subsequent differences in personality’ (Whiting 1963: 1) in six field sites in Kenya, Mexico, the Philippines, Japan, India, and the US. Its ethnographic results were rich, with systematic attention to children’s treatment and routines, but with little attempt to make a general argument, given the significant differences between the cultures under study. Robert LeVine, an original member of the Six cultures team, continued its tradition of in-depth, observational research, examining childcare among the Gusii of Kenya from the 1950s to the 1970s. He argued that Gusii practices which diverged from those considered optimal in the US – such as not asking questions of young children, or not allowing them to initiate conversation with their elders – made sense within a local model of childhood and care (LeVine et al. 1994).

Early British anthropology was less concerned than American anthropology with psychological development, and more interested in socialization as the broad process through which immature beings became mature, competent members of a society. A generation of anthropologists trained by Bronislaw Malinowski included descriptions of children’s lives as a standard element of their ethnographic monographs. In We, the Tikopia, Raymond Firth discusses children’s care by and relationships with family members, the ‘independent little bands’ of children that work and play together, and children’s role in helping households run smoothly’, given their obedience to adult instruction (1936: 145-150). In Chisungu, Audrey Richards (1956) analysed a series of ritual acts and physical challenges for Bemba girls, one of a number of studies of initiation rituals and their role in the socialization of children. This work showed how the ‘end’ of childhood, and the attainment of adulthood, was not necessarily a natural event, but had to be achieved through ritual means. Studies of children’s position and role within the family also drew attention to the impacts of birth order (Firth 1956, Fortes 1974) and fostering arrangements (Goody & Goody 1967) on children’s treatment.

In linguistic anthropology, a number of anthropologists have focused on ‘language socialization’, the ways in which children are socialised to use language in different societies, and the ways that this shapes children’s development. Elinor Ochs and Bambi Schieffelin (1984) outline and compare three different ‘developmental stories’ with respect to infants’ language socialization. The first of these, the ‘Anglo-American white middle-class developmental story’ (the ‘story’ taken as standard in much psychological literature), involves an approach to infants as fully communicative partners. This cultural context encourages face-to-face interactions and mutual gazing between infants and caregivers, simplification of speech by adults (‘baby talk’), and the rich interpretation of infant vocalizations. By contrast, the second such ‘story’, found amongst the Kaluli of Papua New Guinea, emphasises the ‘softness’ and lack of understanding of infants. Here, infant utterances are not interpreted, and babies are not spoken to in ‘baby talk’.^[6]Instead, Kaluli caregivers turn their babies outward towards the social group, and speak ‘for’ their infant, often in a high-pitched, nasalized voice. Finally, according to the ‘Samoan developmental story’, young infants are also not conversational partners; neither babbling nor baby-talk are encouraged, and children must instead be socialised to show ‘respect’ by always considering the perspective of higher-ranking persons. Based on these stories (and their attendant constructions of early childhood), Schieffelin and Ochs argue that societies can be divided into two main types: those (such as white Anglo-American society) that adapt situations to the child, and societies (such as Kaluli and Samoa) that try to adapt the child to situations.

Amongst the Beng of rural Côte D’Ivoire, infants are thought to be reincarnated ancestors emerging from an ‘afterlife’ called wrugbe (Gottlieb 2004). This spiritual journey is a long and difficult one, and therefore infants and young children are thought to have a fragile hold on life. Gottlieb considers Beng infants’ social lives to be strikingly active when compared with babies in her native US. Though her research moves beyond earlier concerns with culturally-specific personality development, Gottlieb nevertheless sees the Beng emphasis on infant sociability as shaping children’s emotional responses in distinctive ways. In particular, and as a result of extensive alloparenting (care by those other than parents), Beng babies do not have exclusive or intensive attachments to their mother, something that might be seen as part of ‘healthy’ development in Western settings. Similarly, in Inuit morality play (1998), an ethnography of a three-year-old girl, Jean Briggs approaches young children’s actions and experiences as part of a complex social world shared with various adults. Briggs argues that Inuit adults encourage children to think deeply about moral issues by presenting them with emotionally powerful problems in an exaggerated and personally relevant style. This takes several forms, most notably the asking (by neighbours and kin) of dangerous questions – ‘Will you come and live with me?’ ‘Shall I be your new mother?’ ‘Shall I kill your father?’ – often in a sustained ‘interrogation’. Through these complex, playful dramas, Inuit adults test children, experiment with their developing emotions, and help them learn to control their behaviour in specific ways.

Knowledge and learning

Anthropological research with children has always been interested in ‘education’ in its broadest sense. Childhood, from this perspective, is interesting because it is the crucial period during which cultural knowledge is re-constituted, and possibly negotiated, by children. Although adults sometimes explicitly instruct children in particular ideas or practices, much of this learning takes place in an unconscious, embodied way. Raymond Firth saw ‘education’ in Tikopia as practical and non-disciplinary, ‘hinging upon the participation of the child in all ordinary activities from early years’ (1936: 147). Similarly, in Social and psychological aspects of education in Taleland (1938), Meyer Fortes emphasised how Tallensi children, unlike many British children of his time, did not exist in a differentiated ‘children’s sphere’. Rather, they shared the same activities and knowledge as adults, allowing them full participation in economic, ritual, and religious life. Fortes’s text gives a rich account of children’s everyday education as they take part in agricultural tasks, look after livestock, join ceremonies and dances, and joke with grandparents. He argued that children in this rural society rarely asked ‘why’ questions, since so much of their learning took place in real situations where they directly observed and practised skills.

Earlier work within the socialization frame tended to focus on childrearing by adults as a way in which (relatively passive) children were moulded. By contrast, more explicitly ‘child-focused’ ethnographies approach children not simply as adults-in-the-making but as social agents in the present. Such work gives more space to what children say and know, and the ways in which this might be different to what they are told by adults. In The private worlds of dying children (1978), Myra Bluebond-Langner describes how, as their illness progresses, leukemic children come to learn about the world of the hospital in which they are treated, about their parents’ desires, and about their own grim prognoses. Bluebond-Langner argues that American childhood is commonly understood as ‘a period of formation, of becoming’ in which children are ‘molded for their futures’ (1978: 210). This concept explains the reluctance of both medical personnel and children’s parents to talk explicitly to the children about their condition and treatment. Although these children still manage, through close observation, to gather accurate information about disease and death, they must practise what Bluebond-Langner calls ‘the rules of mutual pretense’ in order not to disrupt the ‘illusion of their normalcy’ (1978: 213). In pretending not to know that they are dying, the children demonstrate their social competence, upholding the future-oriented concept of childhood, and protecting both their parents and their doctors.

Other studies have also explored this disjunction between (limited) adult instruction and (extensive) child knowledge. Peggy Froerer (2011) argues that, in a tribal village in rural Chhattisgarh, central India, children are never systematically taught moral lessons in right and wrong. Nevertheless, as peripheral participants at adult-centred rituals, children pick up moral understandings, which they then utilise in response to illness. In the village, illnesses may be considered ‘simple’ and morally neutral, or may be considered to be ‘supernatural’ punishments for moral infractions. Adults state very explicitly that they do not consider children capable of causing “supernatural” illness, whether in themselves or others, since prior to marriage they are not thought to have acquired full knowledge (Froerer 2011: 376). However, children have a different understanding of their knowledge and capabilities and consider themselves to be responsible for illnesses caused by ritual or other misdeeds. This example shows how children do not simply reproduce or replicate the ideas of adult social actors (who are often dismissive of children’s explanations), but have their own perspective on moral responsibility, actively applying adult understandings to their own behaviours. More broadly, some anthropologists argue that it is only by studying how children come to make sense of particular concepts, such as hierarchy or ethnicity, that adult knowledge can be properly understood (Toren 1993, Astuti 2001).

Children’s abilities to only partially accept the messages of adults regarding child competencies are also demonstrated in work on language use. On the Caribbean island of Dominica, a complex, multilingual situation exists, where English (the official language of government and school) appears to be squeezing out the local Afro-French creole, Patwa (Paugh 2012). Adults, who want their children to master English, forbid them to speak Patwa, even as adults use Patwa in their own interactions, or even sometimes to instruct children. Nevertheless, ethnographic attention to micro-level, playful interactions between siblings and peers in ‘child-controlled settings’, shows how Patwa remains an important language for children. Whilst it may be forbidden to them, the fact that children hear Patwa used by adults in ‘affect-laden socializing activities’ means that children use the language in specific ways amongst themselves, most notably to ‘intensify their speech and control others’ (Paugh 2012: 19). This work is informed by the tradition of language socialization described above, but shows the significance of children’s talk within a multi-lingual context where language use carries complex socio-political messages.

Formal schooling and new models of childhood

The spread of formal schooling around the world has brought with it new models of the place and work of childhood. Significantly, one consequence of the spread of formal schooling noted in much anthropological work is a disconnect between the knowledge and skills valued in school, and locally-valued, culturally-specific skills and knowledge. For example, the introduction of formal schooling amongst the Huaorani of the Ecuadorian Amazon has led to a striking contrast between the spaces of schooling and the social environments in which children are raised (Rival 1996). Attending school gives these children few transferable skills, whilst spending time away from the forest and longhouse deskills them in the knowledge essential to Huaorani cultural and economic life. This gap, or disconnect, between school and children’s home environments was central to Pierre Bourdieu and Jean-Claude Passeron’s (1977) study of French schooling and inequality. They see the French educational system as reproducing wider social hierarchies by valuing the cultural capital (forms of speech, manners, and ways of behaving learnt unconsciously in a home environment) of children from upper-middle-class backgrounds and devaluing the cultural capital of lower-class children. Schools, they argue, make middle-class children’s cultural capital (a product of their class upbringing) appear ‘natural’, thus legitimising the reproduction of class privilege. This imposes a kind of symbolic violence (non-physical repression) on non-elite children, who develop a sense of their ‘social limits’ and begin to self-censor in the company of the elite. In ethnographies of schooling, such unofficial values and judgements are often referred to as the ‘hidden curriculum’.

Bourdieu and Passeron’s theory of the connections between schooling and social inequality has come to be known as ‘reproduction theory’, since they focus on the role of formal schooling in reproducing wider structures of inequality. However, this work often fails to consider the perspectives of the very children being marginalised in school. By contrast, Paul Willis (1977) gives more space to the ways in which working-class youth creatively struggle against the inequities of the schooling system. Learning to labour is an ethnographic study of a school in an industrial, urban setting in the English Midlands. The primary focus is ‘the lads’, a group of twelve boys who Willis describes as members of an ‘oppositional culture’ in the school. In contrast to Passeron and Bourdieu, Willis shows how the lads were not simply socialised by the institution to self-censor or to accept their subordinate position. Instead, he describes how they constantly disrupted school routines, fidgeting and tutting in class, following a ‘foot-dragging walk’ down corridors, and frequently erupting into ‘derisive or insane laughter’ at the expense of the school’s conformist pupils (1977: 13). These boys talk back to the middle-class ideologies of school, and celebrate their own working-class masculinity. Ironically, though, in choosing ‘having a laff’ (1997: 29) over conformity to the educational process, ‘the lads’ ultimately seal their own fate, leaving school without qualifications and reproducing their class position.

If this, and later, research (see especially Evans 2006) emphasises the role of class structures in shaping children’s experiences of formal schooling, other works have analysed the significance of racial and gendered aspects of identity to exclusion (see Canessa 2004). They explore, for example, how the ‘hidden curriculum’ of a Californian elementary school marginalises and isolates African-American boys, denigrating their style and body language, judging their familial forms of English as inferior, and ultimately constructing them as ‘bad boys’ (Ferguson 2000). Another ethnography of a Californian school analyses the construction and policing of high school masculinity through the ‘fag discourse’ used to attack students who (either temporarily or permanently) appear to be homosexual (Pascoe 2007). Significantly, upholding (heterosexual) masculinity is important not only to teenage students but also to the school itself, as an institution invested in rituals (school rallies, prom, yearbook photos, popularity contests) that affirm heteronormative gender roles.

In addition to highlighting the ‘hidden curriculum’ of the implicit or unintended lessons, values, and perspectives transmitted in schools, critical anthropological work on formal schooling has also explored its other impacts. One key issue is the extent to which school systems have ‘stolen’ childhood from children, turning their lives into a stressful, endless ordeal. Thus South Korean children have been described as facing an ‘examination war’, with nearly every minute of their lives organised around school or the extra classes (up to five hours a day) deemed necessary to ensure their ‘success’ (Cho 1995). Students are ‘trapped in a system that calls for intense inhuman competition and rote learning’ (1995: 154), with resultant impacts on mental and physical health. Similarly, Norma Field (1995) paints a portrait of Japanese education as ‘endless labor’, with the ordinary school day followed by ‘cram school’ in the evening. Whereas Ariès drew attention to the lack of a set-apart concept of childhood in early European history, Field highlights the ‘disappearance of childhood’ taking place in ‘an orderly, prosperous society’ (1995: 60). A further, somewhat different, critique is that formal schooling has created aspirations and expectations that, for many children, in developing contexts, are impossible to fulfil. In response, some governments have tried to create more practical school curricula for children. For example, in the late 1990s, the Ugandan government introduced a more ‘rural’ or ‘vocational’ curriculum that promoted local farming and aimed to equip children with the relevant skills for agricultural livelihoods (Meinert 1995). However, this was not well received by rural children themselves, who had hoped that going to school would enable them to pursue an urban social status. In the words of one sixteen-year-old, ‘Life in town is sweeter…. If you get stranded here in the village, you will work very hard, but life is just bitter’ (Meinert 1995: 183).

Anthropology, then, has often taken a critical perspective on formal schooling, questioning its separation from local knowledge, showing how it reproduces existing social hierarchies, and drawing attention to its frequently negative impacts on childhood experience. However, the picture drawn is not entirely negative. In rural Taiwan, and despite the disconnections between school and everyday family life, the importance of schooling is emphasised in part because schoolteachers are held up by parents as models for children to emulate (Stafford 1995). Similarly, Ethiopian schoolchildren see their teachers as inspiring figures and are strongly motivated to please them (Marshall 2016). This example is interesting for showing how the promise of better jobs and higher status in the future are not the only reasons why children might wish to attend school. In this Ethiopian case, children are motivated by the desire to be loved, valued for their hard work, and ‘respected’.

Problematising child rights

Today, the work of many international development agencies and child-focused NGOs is informed by the United Nations Convention on the Rights of the Child (CRC). The CRC puts forward a particular model of childhood as a time deserving of ‘special care and assistance’. Much contemporary, critical anthropological work on childhood has been concerned with exploring the implications of this universal construction of children’s individual rights, particularly in developing contexts.

Two key principles of the CRC are that, firstly, the ‘best interests’ of children should be the primary consideration in all actions concerning them (Article 3) and, secondly, a child’s views should be sought in matters affecting the child (Article 12). However, these principles are not straightforward. For example, in NGO programmes for orphans in Uganda, it is usually adults who make decisions about children’s ‘best interests’; child orphans themselves are rarely meaningfully consulted (Cheney 2017: 52-3). In Thailand, child prostitutes have become figures of concern to the international community and yet, as Heather Montgomery explores (2001a), children’s own voices and perspectives on this difficult issue are rarely heard. Montgomery conducted fieldwork in a squatter community where child prostitution had become central to maintaining precarious household incomes. Contrary to the stereotypes of activists, children in this community do not necessarily see themselves as passive victims, but emphasise that they are working to uphold a moral obligation to their parents. For Montgomery, the problem with the CRC is that it does not give clear guidance on how to prioritise or balance achieving different child rights. In order to uphold children’s ‘best interests’, she asks, whose voices should be prioritised? And how can we balance children’s right to be free of sexual exploitation with their right to family life, or to have their voices listened to? (2001b: 95)

The contradictions of child-rights-framed aid programmes have also been investigated in Vietnam (Burr 2006). One NGO-supported project in Hanoi aimed to remove children from the streets and help them return to countryside homes. However, although the program was apparently informed by the CRC, it put adult wishes before those of children, and was entirely ineffective. No provision was made to help rural families cope with the extra costs of supporting a dependent person, and so a significant percentage of the relocated children soon returned to their life in the city. The study outlines a clash between children’s own desires to work and the beliefs of (privileged) NGO workers that they should not. As many ethnographers have shown (Aptekar 1991, Glauser 1997, Hecht 1998), adult perceptions of such children as ‘out of place’ on the street are often behind misguided attempts to ‘help’ them.

Debates around ‘child labour’ (work that exploits or harms children) are also highlighted by Melanie Jacquemin (2006), who describes a child-rights-framed NGO project supporting ‘Young Female Domestics’ in the city of Abidjan, Côte D’Ivoire. This project concerned paid domestic work carried out by girls under the age of fifteen. However, by focusing only on a minority of girls known as ‘little waged maids’, the project neglected a larger category of child workers known locally as ‘little nieces’. These girls are considered foster children and often work long hours in the homes of extended family members for no pay. Indeed, Jacquemin argues that the distinction between being a family member and an employee is kept ‘purposefully blurred’ in these situations in order to ‘obscure but maximize exploitation’ (2004: 485). By focusing only on ‘child labour’ as a problem for paid workers, the project in Abidjan inadvertently contributed to local understandings (shared by the girls themselves) that what ‘little nieces’ do is not work.

Not only does Jacquemin’s research demonstrate the potentially negative impacts of heavy-handed rights-based attempts to ‘abolish’ child labour, it also chimes with other research on the gendered complexities of children’s work. In Children’s lifeworlds (1994), Olga Nieuwenhuys makes a case for taking children’s perspectives on their work seriously. Although adults in a Keralan village did not see girls’ domestic tasks as ‘work’, Nieuwenhuys discovers that the girls themselves did. She argues that discourses on child labour make light of the huge differences between the work of male and female children, where the work of the latter is productively essential but ideologically undervalued. More widely, Nieuwenhuys has problematised what she describes as the ‘dissociation of childhood from the performance of valued work’ (1996: 237), arguing that rights-based attempts to ban ‘child labour’ have the paradoxical impact of reinforcing children’s vulnerability to exploitation.

Despite attempts to globalise ‘child rights’, cultural context is key to understanding children’s particular vulnerability or resilience. Susan Shepler (2014) focuses on the demobilization (releasing from various armed forces) of former child soldiers in Sierra Leone, following the 2002 end of the country’s decade-long civil war. Shepler argues that Sierra Leoneans have their own ‘culturally specific reactions to child soldiering’ that are not reflected in global child rights discourse (2014: 16). What is most disturbing to them is not the so-called ‘lost innocence’ of child soldiers, but the disruption of village-based intergenerational relations. Shepler pays detailed attention to youth who bypassed the rights-based programmes designed to help them, and instead ‘spontaneously’ reintegrated. Ironically, although such youth do not have access to the benefits that NGOs provide, they are better able to blend back into their communities than children who are ‘formally’ reintegrated, whose ‘child soldier’ identity is often unintentionally hardened.^[7]

The politics of childhood

Debates around children’s rights and the imposition of particular expectations of children’s needs make clear that childhood is often a politically contested concept. Liisa Malkki analyses the profoundly depoliticised ways in which children’s images are utilised in ‘transnational representational spheres’ (2010: 58). For example, the figure of the child often serves to represent a ‘basic human goodness and innocence’ (2010: 60; see also Fassin 2013). However, the problem with this representation, and others, is that when children do not fit into these images, they are viewed as a ‘category mistake’. That is, they are not seen as ‘real’ children. This aspect of Malkki’s analysis helps explain a number of examples where young people’s status as children is not recognised. For example, in Zimbabwe, Brazil, and Haiti, street children have been criminalised and dehumanised as dangerous ‘others’, leaving them vulnerable to round-ups, and violent attacks, by the police (Bourdillon 1994, Scheper-Hughes & Hoffman 1998, Kovats-Bernat 2006). In the UK, immigration officials may disqualify those seeking political asylum from the category of ‘children’ because ‘real’ children are assumed to be apolitical (Crawley 2009: 99). In Sabah, East Malaysia, the Malaysian-born children of migrant workers are seen by the wider society as ‘impossible children’ since they have been born to people who are meant to be temporary, and whose families are meant to reside elsewhere (Allerton 2018).

Since the publication of Mead’s Coming of age in Samoa, several anthropologists have utilised the ‘coming of age’ genre to explore how children negotiate new expectations and experiences in rapidly changing social conditions (Markowitz 2000, Fong 2004). This work demonstrates the micro-political and emotional impact on children of inter-generational change. For example, in traditional Canadian Inuit society, ‘adolescence’, as it is commonly understood, did not exist. Instead, through constant intergenerational contact, children reached social and economic maturity at a relatively young age (Condon 1990). As the previously nomadic Inuit have become concentrated in settlements, and with the introduction of formal schooling and television, adolescence has gradually emerged as a new category of childhood experience. In the settlement, older children are less reliant on their families, and able to spend more time with groups of peers. However, the pressures of new social and economic expectations, combined with the loss of cultural and linguistic traditions, have led to an increase in drinking, violence, and youth suicide (Condon 1990: 276; see also Stevenson 2009).

Ethnographies of transnational migration and kinship have also described the impact on children’s lives of social and economic change. In Children of global migration (2005), Rhacel Salazar Parreñas examines the lives of children ‘left behind’ in the Philippines by migrant parents. Amongst children of migrant mothers, a discourse of ‘abandonment’ was particularly prominent, and children expressed emotions of longing, grief, and anger about their situation. Parreñas argues that the ‘gender paradox of globalization’, in which women are pushed to work outside the home even whilst they are still held to the ideal standard of a nurturing and physically intimate mother, has mostly negative psychological consequences for children. By contrast, in her study of Ghanaian transnational families, Cati Coe (2014) describes how the West African region has a long history of ‘fostering’ in which children ‘circulate’ between different households. Here, migration is an ever-present possibility in children’s lives. Nevertheless, even in this context, there is still a marked contrast between the views of adults and children. Whilst parents tend to be relatively upbeat in their representations of migration, children’s emotional responses to their living arrangements in Ghana reveal feelings of a lack of control over their situation.

However, despite the often-negative impacts on children of social change, and of new expectations of childhood, care, and kinship, children often respond positively to social transformations. In a Palestinian refugee camp in Jordan, children are compelled to engage with different projects of (Palestinian and Jordanian) nationalism, as well as the transnational Islamist movement (Hart 2002). However, they do so creatively, reshaping and resisting different influences and sentiments where possible. For example, one 12-year-old girl, Muna, identifies strongly as ‘Palestinian’, and is concerned about religion, but also supports a Jordanian football club and enjoys aspects of Western TV and pop music. Muna’s response to multiple cultural and religious influences is illustrative of children’s ability to imagine themselves as belonging to more than one community, and to respond in dynamic ways to political discourses.

Conclusion

Anthropological research has shown how childhood varies across space and time, how it involves different expectations of young people of different ages, how it intersects with other variables such as social class, and how it shapes children’s everyday experiences. Although many earlier anthropological studies were interested in childhood for what it revealed about the cultural formation of personality, or the socialization of young people into social roles, later work has moved away from a narrow focus on children as simply adults-in-the-making. Ethnographies that take children’s own knowledge seriously have explored children’s own cultural perspectives, and their ability to creatively respond to linguistic, social, and economic change. Even as arguments are made about the ‘disappearance’ of childhood in contexts of contemporary formal schooling, economic exploitation, or armed conflict, children often demonstrate considerable resilience.

One powerful finding of child-focused ethnography, as seen in Bluebond-Langner’s research with terminally ill children, is that children are often very aware of the realities from which adults may try to shield them. This is why understanding concepts of childhood is a central task in appreciating the realities of children’s lives. As Donna Lanclos notes in her study of play in Belfast, children ‘do not passively accept the definitions of “child” that are imposed from without’ (2003: 48). In their language use, their jokes, or their interpretation of illness, they may subtly resist adult perspectives on childhood. This resistance is nicely illustrated by Danish toddlers who are bussed out of the city to attend ‘nature kindergartens’ (Gulløv 2003). Whilst their parents see these natural spaces as the proper place of childhood, some of the children complain about the cold and lack of toys. Anthropological research shows how, even when we think we are acting in children’s best interests, we may be imposing our own understandings of childhood on them.

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Note on contributor

Catherine Allerton teaches anthropology at the London School of Economics. She is a specialist in island Southeast Asia, with research interests in children and childhoods, migration, kinship, place, and landscape. She has conducted fieldwork in rural Flores, Eastern Indonesia, and in Kota Kinabalu, the capital city of Sabah, East Malaysia.

Dr Catherine Allerton, Department of Anthropology, London School of Economics, Houghton St, London WC2A 2AE, United Kingdom. c.l.allerton@lse.ac.uk

[1] This article draws in part on material published in ‘Guide to further reading’ (2016) in Children: ethnographic encounters (ed.) C. Allerton, London: Bloomsbury Academic.

[2] For a critical feminist approach to mainstream theories of child development that draws particular attention to their impact on everyday family lives, see Burman (1994).

[3] For example, Nicholas Orme, in Medieval children (2001), refutes the idea of the nonexistence of ‘childhood’ as a distinct phase of life in the Middle Ages, drawing on evidence of parents who grieved intensely for sick or dead children.

[4] The central text in outlining this paradigm is Constructing and reconstructing childhood (1990) by Allison James and Alan Prout, which emphasises the importance of studying children’s social relationships and knowledge in and of themselves.

[5] Nancy Scheper-Hughes (1993) has also shown the impact of state neglect and poverty on the ability of Brazilian mothers to care for their infants.

[6] This strongly contradicts the arguments of those, such as Colwyn Trevarthen (1988), who argue that the use of simplified ‘baby talk’ is a universal, innate response to infants.

[7] Research with ‘child soldiers’ has also questioned the application of the (adult) psychiatric condition of post-traumatic stress disorder (PTSD) as a way to understand their responses and wellbeing (Boyden & de Berry 2004: xiii).

Global health

Felix Stein — Thu, 20 Jun 2019 20:40:13 +0000

Emily Yates-Doerr Kenneth Maes

Oregon State University and the University of Amsterdam; Oregon State University

Initially published 20 Jun 2019

http://doi.org/10.29164/19ghealth

Abstract:

Global health is a field of expertise that has emerged at the turn of the twenty-first century alongside changing disease profiles, health technologies, and governance structures. This entry provides an overview of the historical conditions that have given rise to the field. It illustrates the new political and financial transformations that have made global health 'global', in contrast to earlier work on international, world, or tropical health. It also charts new undertandings of wellness and disease, which have been shaped by global pandemics including HIV, the increase in non-communicable illnesses, and the recent concern for planetary sustainability. While anthropologists have played a central role in global health since its inception, the fields of anthropology and global health also operate in an 'awkward relation' (Strathern 1987) with one another. In the second part of the entry, we overview how anthropologists work within, against, and in-between the expertise of other global health practitioners. We suggest that insofar as the field of global health is emergent, so too are the ways that anthropologists engage with it.

Introduction: An awkward relation

Throughout the twentieth century, ‘global health’ was an uncommon term. The terms ‘world health’ or ‘international health’ were commonly used instead to discuss expansive supra-national health concerns, from epidemic diseases to political relations and financing. ‘Global health’ emerged to draw attention to the global connectedness of diseases and of the people and institutions that govern and respond to them, driven by the spread of new technologies that facilitate rapid global transit, exchange, and communication.

Global health has become codified as a field of expertise over the new millennium, and today the term is used widely. Global health centres exist at most major academic and health-focused institutes. The World Health Organization now issues a global health agenda^[1] and compiles its health-related statistics in a database called the Global Health Observatory.^[2] Numerous publications advance ‘global health science’. For example, the journal Global Public Health launched in 2006, and the medical journal The Lancet initiated a publication devoted entirely to global health in 2012. International conferences organised around the theme of global health draw thousands of professional and academic participants each year and news outlets commonly have global health sections as part of their broader health reporting.

As global health has exploded onto the scene of health scholarship, the field of anthropology has responded by taking it up as a set of practices within which to engage as well as a concept to study critically and ethnographically. Many anthropology departments now participate in multidisciplinary undergraduate and graduate programs focused on global health, and university partnerships between centres for global health and anthropology departments are common. Academic presses such as Duke University’s Critical Global Health series also connect the fields and several anthropologists have published review articles, readers, textbooks, and edited volumes on global health (e.g. Nichter 2008; Janes & Corbett 2009; Singer & Erickson 2013; Biehl & Petryna 2013; Adams & Biehl 2016; Brown & Closser 2018). Moreover, numerous meetings convened in recent years explore the rapidly transforming theories, policies, and practices produced through the intersections of these fields (e.g. de Klerk 2015).

Anthropologists have found diverse ways to engage with global health, and they have witnessed important frictions between the methods, orientations, and interests of different scholars and practitioners in these overlapping fields. In this sense, anthropology and global health are in ‘awkward relation’ to each other (Strathern 1987). This is to say that tensions arise when two differently-oriented and internally diverse fields meet and occasionally merge, and that the coming together of the fields will not be seamless. This entry will review the alternative orientations and praxes that have emerged in global health and anthropology’s intersections, and illustrate how this heterogeneity can be both productive and disruptive to efforts to address health problems around the world.

The entry is divided into two parts. The first shows that global health’s formations are both expansive and emergent. Its sprawling systems and organization of stakeholders include an exceedingly complex and dispersed set of interactions between microbes, carcinogens, billionaire donors, government officials, medical and pharmaceutical corporations, NGO workers, health care professionals, and publics. Moreover, the priorities, methods, and impacts of these multiple actors are rapidly transforming. That said, ‘rapid transformation’ is also a discursive strategy of some powerful players in the field of global health, and attention to the field’s historical formation shows that much of what is presented as ‘new’ echoes colonial-era patterns of consolidating wealth, exacerbating global inequality, and monitoring sickness and health for the sake of empire and/or corporate profit (Packard 2016; Trouillot 2003).

The second part of the entry shows that anthropologists over the past two decades have held a variety of dynamic positions in relation to the field of Global Health. It focuses on three positions, reviewing how anthropologists have worked within, against, and in-between dominant global health interests.

Emergent transformations in global health

1. Responding ‘globally’

‘Global health’ has emerged in policy and development spaces that were, until recently, organised around ‘international’, ‘world’, or even ‘tropical’ public health concerns (Brown et al. 2006). It operates as both a collection or assemblage of individuals, organizations, and nation-states and as a discourse about health that travels beyond these institutions. The term has become so commonplace in public discourse that it may be easy to overlook that it is an invented, historically specific concept, which organises the world by prioritising some set of values over others (eg. charity over political justice, moral universalism over cultural specificity, global citizenship over Indigenous sovereignty, etc.) (Butt 2002).

Much anthropological work on the topic unpacks how global health has been constituted as a ‘global’ domain. It emphasises that the category ‘global’ is not an objective summation of all places in the world; rather, places and things that are considered to be global are produced out of specific historical and cultural milieus (Law 2004; Tsing 2000). And though ‘global’ purports to represent the entire world, the category often reinforces exclusions and absences. Current anthropological engagement and concern with global health can thus be seen as a continuation of anthropology’s awkward relation with state-making projects; indeed, medical anthropology itself has a root in the enlistment of anthropologists into twentieth century international health development projects (e.g., Foster 1976).

However, as Nolwazi Mkhwanazi (2016) points out, global health does not adhere to a single origin story. Doing global health well, she insists, entails searching out and listening to the stories that are often systematically erased alongside those which are commonplace. For example, the widespread interest in sexually transmitted disease and sexual violence in Africa on the part of global health organizations may foreclose attention to the fact that, for many, sex remains a source of thoroughly healthy pleasure (Hendriks & Spronk 2017). Or, the global health agenda focused on ‘maternal health’ may unfairly burden women with the responsibility for reproduction while silencing the experiences of domestic and caring fathers (Han 2009, Powis 2019). It is important to keep the power of stories in mind when reading the common histories of the field. Whether the explanation offered for the rise of global health focuses on transitioning disease profiles, changing governance structures, or something else entirely, it must be understood in terms of its narrative effect, which creates and reinforces the thing it purports to simply describe (Mattingly & Garro 2001).

One powerful story about the ascendance of global health emphasises the acceleration of contagions and potential pandemics whose vectors of transmission do not adhere to national boundaries (Caduff 2014). These epidemics involve viruses such as the human immunodeficiency virus (HIV), swine flu, or Ebola; bacteria such as tuberculosis or cholera; protozoa like the ones that cause malaria; and agents whose mechanisms of infection are not well understood. Many experts have responded to fears about the spread of illness by linking global health to national security. For example, the U.S.-based Centers for Disease Control (CDC) describes the basis for its commitment to global health as follows:

Disease knows no borders. In today’s interconnected world diseases can spread from an isolated, rural village to any major city in as little as 36 hours. The U.S. cannot protect its borders and the health of its citizens without addressing diseases elsewhere in the world. (2018)

The case made by the CDC and numerous other health agencies is that ‘local’ health and illness programs must be simultaneously global in outlook, since global monitoring is good for the nation. Of particular concern are countries or regions that health professionals frequently characterise as ‘resource-poor’.^[3]Global experts often positioned these countries as the containers of diseases – or people with diseases – which might, potentially, spread beyond their borders (Brada 2011). Experts typically talk about diseases moving from south to north or east to west. It is important to note, however, that many countries deemed ‘poor’ by the global health community are, in fact, resource-abundant and their apparent poverty is the result of Euro-American colonial expansion and extraction (Benton 2014) as well as on-going, deliberate efforts to maintain income and health inequalities on the part of exploitative global elites (Vasquez 2018).

In addition to categorising disease patterns and technologies, the ‘global’ of global health also references new structures of governance. The meteoric rise of global health in the past two decades speaks to the crucial role of non-governmental actors, including corporate and philanthropic foundations, in shaping health services today (McGoey et al. 2011; Nguyen 2005; Rottenburg 2009). The World Health Organization, founded in 1948, and the Latin American Health Organization, founded in 1902, once coordinated public and international health concerns among their ‘member states’. Now organizations headquartered in the Global North such as the Bill and Melinda Gates Foundation or Save the Children serve as ‘uneven partners’ of impoverished countries in the project of making health globally accessible (Crane 2010). Yet while the ‘single story’ of global health emphasises the emergence of non-state actors and disappearance of the state, other stories make clear that non-state actors were historical drivers of ‘international’ health, and that the involvement of the state remains central and on-going in global health practices today (Quirke & Gaudillière 2008; Vaughan 2007).

One especially common origin story of global health locates its roots in the strategic responses to the devastating effects of twentieth century HIV. In the US and Western Europe, infected people and their allies and advocates successfully pressured their governments to make therapeutic drugs more widely accessible in the 1980s and 1990s. Meanwhile, antiretroviral drugs (ARVs) and therapies remained prohibitively expensive for many people dying outside these countries, particularly in Sub-Saharan Africa, Brazil, and India. In fact, many health experts even argued against treating AIDS outside of Euro-America, framing prevention and treatment strategies as mutually exclusive, and arguing that AIDS should be prevented but not treated (Moyer 2015).

Grassroots movements connecting diverse global communities were instrumental in challenging the denial of ARVs to people outside the West. Activists demonstrated that successful treatment and high adherence rates were possible in resource-restricted settings and they leveraged pharmaceutical companies to make generic drugs available worldwide (Avirgan 2005). They also convinced donors to pay for the delivery of treatment and care, bringing foundations and non-governmental entities into the conversation. Bill Clinton, as President of the United States, initially supported Western pharmaceutical companies’ attempts to protect their patents on antiretroviral drugs abroad. In 1999, under pressure from global AIDS activists and members of the Congressional Black Caucus, Clinton announced that the United States government would not pressure sub-Saharan African countries to give up their rights to import or produce cheaper, generic ARVs (Messac & Prabhu 2013). In the early 2000s, the newly formed Clinton Foundation brokered a reciprocal investment/production deal between governments and generic drug producers in Africa and India. This was broadly described as a ‘win-win’, with profits made by drug companies and needy government purchasers securing drastic price reductions (Biehl 2006; see also Allen 2006; Erikson 2016).

The Clinton Foundation’s involvement in ARVs set the stage for other philanthropic organizations to join the emergent global health movement. In 2001, Amir Attaran and Jeffrey Sachs published an influential article in The Lancet, proposing a new funding structure dedicated to controlling the world’s three greatest infectious killers (Attaran & Sachs 2001). Later that year, leaders of the world’s eight largest economies launched the Global Fund to Fight HIV/AIDS, Tuberculosis, and Malaria. While the goal of universalising access to treatment has not been met, the Global Fund helped galvanise a massive increase in health financing that connected diverse non-state actors, including civil society groups, in the project of health governance. Speaking of health as ‘global’ and not ‘international’ was, in this sense, a strategic move to bring together actors whose interests extended beyond the wellbeing and security of single nations.

In addition to its unfolding against the backdrop of a worldwide mobilization against HIV, twenty-first century Global Health has also emerged as a response to the devastating global effects of structural adjustment programs, which dominated the international development agenda during the 1980s and 1990s. The World Bank and the International Monetary Fund had offered loans to low-income countries in exchange for various fiscal reforms. Some of the most crippling reforms involved government reductions in health care spending, leading to poorer quality and often non-existent public health care (Pfeiffer & Chapman 2010). During this period, the deregulation of global, transnational corporations led to the accumulation of massive wealth in the hands of the few, while also contributing to large-scale environmental degradation through resource extraction and the promotion of white middle/upper class consumption habits. Much of the work of global health today aims at righting the wrongs done by a previous era of experts who created widespread health inequity and illness in the name of global development. We explore how this is playing out further in the section below.

2. Transitions in ‘health’

Just as the ‘global’ in global health is emergent and under negotiation, so too is ‘health’. In the current era, it is often difficult to tease apart health as a biological condition of well-being from health as a risk factor, indicator, or proxy for development (Adams & Pigg 2005; Harper 2014). Global health professionals routinely use ‘health’ strategically, to reference both an immediate physiological state and a value-laden future aspiration. The following example of how health and health policy professionals are re-purposing the term ‘health’ illustrates the conceptual fluidity of the term.

‘“Health” has had its day’, Julio Frenk – then Dean of Public Health at Harvard University – declared at a 2013 conference held at the Institute of Health Metrics and Evaluation (IHME), an institute endowed by the Bill and Melinda Gates Foundation which has carried out much of its work under the banner of global health. Frenk was describing what he saw as a decline in the previous era of biomedicine, which had oriented public health toward body-focused and individual indicators for health such as maternal mortality, child morbidity, or average life expectancy. In its place was growing health-related interest in global development.

For Frenk, and many others at the IHME conference, this transition was linked to the Millennium Development Goals (MDGs). As Frenk explained, the assembly of these first UN development goals (in effect from 2000-2015) had been a small affair. Over three days, a relatively small number of politicians and policy experts had come up with eight global goals, giving themselves a 15-year window to meet them. Three MDGs (Goals 4, 5 & 6)^[4]were unquestionably related to biomedicine, seeking to reduce disease and mortality and to enhance health. Yet the goals also promoted a framework for thinking of health as a matter of global economic progress and planning. ‘No one expected the MDGs to be such a success’, Frenk told his audience. Crucially, the ‘success’ he referred to came about not because the MDG targets were achieved (most countries’ attempts to meet them fell far short) but because they significantly changed the conversation and influenced health funding allocations by channelling funding toward the elimination of specific, targeted diseases such as HIV and malaria (see also Hardon & Blume 2005). The merging of health and economic development can be seen clearly in MGD Goal 1, which coupled the eradication of extreme poverty and the eradication of hunger, bringing the experience of bodily suffering squarely into dialogue with economic concerns.

As the UN committee settled on ‘sustainability’ as the theme for their second set of development goals (named the Sustainable Development Goals or SDGs), health further shifted from being primarily a human body-based quality (i.e. the experience of wellness) to being a proxy for economic growth and development. While body-based health concerns such as morbidity and mortality remain key aspects of the SDGs, these operate alongside ‘health’ concerns of gross domestic product, human capital, and environmental sustainability. This result was not the contraction or disappearance of ‘health’ as Frenk had originally declared but rather its expansion: linking health tightly to global development makes health relevant far beyond biomedicine’s traditional focus on the individual body.

Changing disease pathways and illness profiles also fuel transformations in the conceptual underpinnings of twenty-first century health. New antibiotic technologies and the development of the field of nutrition in the early twentieth century ushered in major demographic population shifts. Today, people around the world are living longer and dying more commonly of non-infectious, chronic, and comorbid illnesses than in the past. Complementing conversations that aim to control contagion and limit the spread of illness vectors are conversations about ‘lifespan’ concerns, including metabolic disorders, tobacco prevention, mental health, and cognitive decline (Cousins 2015; Kalofonos 2010; Solomon 2016; Reubi 2012; Davis 2018). Aging, once a given part of life, is becoming a medical condition that is financially lucrative for the health industry precisely because it is not curable (Manderson & Smith-Morris 2010; Danely 2019).

Rising temperatures and sea levels also shape the manifestation of afflictions such as diabetes and kidney disease (Nading 2016; Moran-Thomas 2019). Hygiene has likewise extended beyond the discourse of personal medicine, which often exacerbates racism and sexism by blaming and shaming individuals for system-wide failures (Briggs & Mantini-Briggs 2003; Saldaña-Tejada 2017). It now encompass ‘dirty’ atmospheric airstreams and construction technologies and their related – and still racially and gender-stratified – afflictions (Kenner 2013; Whitmarsh 2008). Concern about the immediate effects of microbial infection broadens to slower disasters, such as absorption of carcinogens or heavy metals. Illness, once defined as a feeling of being sick and suffering, has come to encompass that which accumulates in the body all but unnoticed, as in the case where the victim of a heart attack ‘suffers’ without longterm awareness of the disease. In many conditions of chronic illness, health may not pertain to patient perception but to diagnostic capacity and the anticipation of a future manifestation of illness yet to come (Lynch & Cohn 2016; Weaver & Mendenhall 2014). At the inception of the SDGs, The Lancet released a report on planetary health which expanded the concept of illness even further by drawing climate change, microbial environments, water security, and ecosystem diversity into global health’s terrain (Horton & Lo 2015).

The question of which – or whose – health is targeted by global health institutions has been a central concern for anthropologists (see Yates-Doerr 2018). As discussed further below, global health institutions have been widely critiqued for transforming culturally sensitive and locally attuned responses to complex diseases into ‘magic bullet’, short-term solutions. The field of global health has frequently ignored or devalued structural underpinnings of health and disease including access to food, employment, and high-quality primary health care (Closser 2010; Maes & Kalofonos 2013; Maes 2017). Yet in some important ways, the emergent focus on sustainable development among many key actors in global health may be helping to link health to structures of poverty, the violence of colonialism and deregulated capitalism, and climate vulnerabilities. Some suggest that on-going shifts in global health resonate with the social justice spirit of the Alma Ata Declaration of 1978, in which societal concerns for primary care were strengthened (Fee & Brown 2015). Exemplifying these shifts are movements to expand universal health care and ensure basic income. However, anthropologists caution that optimism about how these movements are unfolding should be tempered (Prince 2017; Berliner & Kenworthy 2017). There is clear empirical support for concern, for instance, that the cash transfer programs championed by behavioural economists and the World Bank may unfairly burden marginalised women’s lives or that turning health into a measure of poverty may have a dangerous ‘hidden cost’, by upholding gendered and racist inequalities (Cookson 2018).

The Global Burden of Disease (GBD) study, commissioned by the World Bank in 1990, did much to make global health a household term by quantifying the economic cost of more than 100 diseases across eight world regions. This study gave diverse and previously incommensurate illnesses a measurable standard through which they could be compared. The Lancet editor Richard Horton noted at a conference at the IHME celebrating the twenty-year anniversary of the study that ‘before the GBD there was not a science of health metrics’. Today, econometrics is central to global health, which makes use of disability adjusted life-years (DALYs), quality adjusted life-years (QALYs), and inequality measures called Gini Coefficients to transform diverse kinds of health into a single health metric to be defined by big data computing technologies. ‘Big data’ has brought health to policies previously focused on development while giving global health a decidedly economic flavour (Adams 2016; Yates-Doerr 2014).

At the GBD retrospective there was widespread celebration of the large number of lives saved by statistical analysis and its related ‘evidence-based policy’ (Adams 2013; Fan & Uretsky 2017). Several in attendance argued that the GBD study was a clarion call for investing more in health information systems. A speaker on an all-male panel noted that if the global community really ‘wanted nurses to save lives, we’d arm them with data collection tools’. This sentiment that data collection is more important than on-the-ground care is popular in many global health circles, whose participants seek distance from intimate patient-centred care practices and strive to improve health through the aggregation and analysis of (presumably neutral) data. A book celebrating one of the GBD’s founders is titled Epic measures: one doctor: seven billion patients, implying that better health data will have universal, global benefits. But data are not value-free, as those who study their assembly have shown (Geissler et al. 2016; Beisel & Schneider 2012; Sanabria 2016; Kelly 2012; Biruk 2018). Cultural and political orientations shape which questions are asked and how they are investigated. Framing health problems in some ways over others, in turn, shapes their solutions. For example, if the global increase in diabetes is framed as a biomedical problem, treatment strategies will address medication and diets; if it is framed as a problem of unjust food systems, responses may seek to bolster community-based food sovereignty and hold predatory food corporations to account (Carney et al.2019).

Sometimes anthropologists and global health practitioners may agree on how health problems and their solutions are constructed, finding each other at points of convergence and adding synergistically to the others’ perspectives. However, the person-centred, participant-observation, and ethnographic methods of much anthropological research are frequently at odds with the metric-centred methods of global health. Anthropologists and global health professionals may additionally take different positions with regard to their critique of colonialism or their embrace (or not) of capitalism, and they very often have differently imagined end-goals when carrying out research and subsequent interventions. The result is an awkward relation between the fields. In the next section, we address the different and dynamic positions that anthropologists hold in relation to the field of global health.

Anthropological engagements with global health

Anthropological engagement with global health can be characterised more by its diversity than by any uniform mode of relating. However, three broad positions of anthropologists with regard to global health can be identified: working within, in-between, and against other global health professionals. Additionally, the idea of an ‘awkward relation’ between anthropology and global health emphasises that different positions can be held by the same actor even while positions are in tension (see also Vernooij 2017).

1. Working within

While the field of medicine pre-dates anthropology by millennia, anthropologists have been centrally engaged in global health for as long as ‘global health’ has been recognised as a field. Some key anthropologists are well-known public health figures, such as the World Bank’s former Director Jim Yong Kim and his long-time collaborator Paul Farmer, co-founders of the NGO Partners in Health, which seeks to simultaneously treat individual illness and address the structural violence that devastates poor communities (2004). Kim and Farmer have been among several prominent anthropologists involved in the formulation and execution of health policies and intervention projects. As such, they are positioned to make a powerful case to the global health community to target the cultures of elite privilege that enable systemic health inequities in addition to – or even instead of – the cultures and behaviours of impoverished people when designing health projects (but see Shaffer 2018).

Other global health anthropologists hold valuable positions on the ground – often with little public visibility – where they work to improve local acceptability of global interventions or ensure projects are run in ways that matter to the people whose lives they are intended to shape (de Klerk 2013; Pell et al. 2019). Anthropological methods are embraced by several global health projects, which have found ethnography, and qualitative research more generally, crucial to their long-term success (Campbell 2011).

This work can be perspective-driven, addressing questions such as: what are local beliefs about vaccinations (Larson et al. 2016; Closser et al. 2016), food supplementations (Trapp 2016), microbiocides used in STD prevention (Pool et al. 2010), or regionally specific understandings of health, wellness, illness, or dying more generally? Their work can also be practice-driven, with anthropologists seeking to learn about how people receive vaccinations so as to make vaccination campaigns more effective (Sullivan 2017), to help experts design dietary interventions to better respond to people’s needs (Warin & Zivkovic 2019), or to impact midwifery policy to bring locally-accepted techniques for childbirth into public health systems (Kennedy et al. 2018; Berry 2010).

The anthropological project of ‘working within’ global health can entail the work of transforming how both experimental trials and their resultant interventions are carried out. Hardon and Pool, for example, call for ‘strategic collaboration’, in which anthropologists team up with biomedical allies to break the hegemony of many existing global health technologies (2016). One strategic collaboration entails multi-authored research projects drawing together experts from a range of regions and disciplines. For example, the book Second chances: surviving AIDS in Uganda, was based on collaborative writing between African and Western scholars to encourage global health’s polyvocality (Whyte 2014). Another example is the Ebola Response Anthropology Network, which formed in response to the 2013-2015 Ebola pandemic, and which aims to enable social scientists and outbreak control teams working for NGOs and governmental and international agencies to interact and engage in more appropriate and effective practices of containment of the epidemic and care for those affected.^[5]

Anthropologists have also noted that for all the talk of its global reach, ‘global health’ remains an English word with British colonial histories – as seen clearly in the outsized presence of global health institutions in former British colonies (and a less active presence in Latin America and China) and in the absence or looseness of regulations that exist for clinical trials and medical experimentation outside of Euro-America (Petryna 2009; Cerón 2011), clinical medical-tourism (Wendland 2012), and family planning policies that continue colonial-era practices of population control (Kuumba 2001).

At the same time, to foreclose global health as an inevitably colonialist project risks another erasure given that scholars located in the so-called Global South have been busy using – while simultaneously remaking – global health’s infrastructures in powerful ways (Brijnath and Antoniades 2018; Lasco & Curato 2019; de-Graft Aikins et al. 2010; Mishra 2013). Anthropologists Michael Tan^[6]and Gideon Lasco^[7], for example, each write a popular editorial column for the Philippines Daily Inquirer, amplifying while also repositioning the sciences of global health. Much like medical anthropologists today operate in the shadow of colonial history while also marking a departure from this history through their critiques of colonialism, so too might anthropologists work from within the apparatus of global health to initiate decolonial transformations in how global health work unfolds today (see Benton, Sangaramoorthy & Kalofonos 2017).

2. Working against

Anthropologists also hold themselves at a distance from global health, critiquing its frequently reductive myopic strategies for ‘doing good’. Rather than leverage capitalist-bound structures that often dominate global health care delivery systems, these anthropologists seek to refuse – or at least destabilise – these pathways for action. This emergent domain of ‘Critical Global Health’ (Adams & Biehl 2016) or ‘Critical Health Ethnography’ (Storeng & Mishra 2014) has vocalised a powerful challenge to how the activities of global health exacerbate deeply entrenched social and political-economic hierarchies. For example, in different ways, Liisa Maalki (2015), Miriam Ticktin (2011), and Elizabeth Dunn (2012) demonstrate how humanitarian calls for charity and compassion individualise suffering and occlude the political and structural determinants of suffering, undermining substantive challenges to capitalism and biomedicine. Numerous anthropologists similarly draw attention to how global health locks its participants into cycles of emergency and crisis which ignore – and thereby perpetuate – deep structural violences and their inequities (Benton 2015; Redfield 2013).

The global health inclination to ‘scale up’ treatment interventions has also received sustained anthropological criticism. Anthropologists showed how the scale up of ARVs in sub-Saharan Africa (Pfeiffer & Chapman 2010) and the response to Haiti’s 2010 earthquake (Schuller 2012) undermined public healthcare systems, contributing to the rise of NGOs and privatised care and leading to immiseration and intensified suffering. Yates-Doerr has critiqued the movement to ‘scale up nutrition’, pointing out that pathways that shape eating and satiety differ from those shaping pathogenic or viral infection, which tend to dominate global health frameworks of biosecurity. This work argues against the common global health paradigm of ‘one health’, which treats health as a singular global entity, by highlighting the diversity in forms of health and forms of health-care that matter in people’s lives (Yates-Doerr 2015a; Yates-Doerr 2015b).

Many involved in Critical Global Health see informed critique as a means of improving the lives of people throughout the globe, yet their critiques also unsettle the very language of ‘improvement’ (Li 2017; Wendland, Erikson & Sullivan 2016). Global health is frequently driven by a call for immediate response to urgent or imminent health crises. By contrast, a critical global health anthropology is likely to frame this as a discursive tactic that too often privileges the scalable, magic-bullet solutions that consistently fail as they move from theory to practice (Erikson 2012; Storeng & Béhague 2017). Here, anthropologists refuse global health’s logics by asking for patience, locality, and slowness (Adams, Burke & Whitmarsh 2014), and even radical inaction. These are posed as difficult but necessary tactics for refusing the capitalist logic of relentless innovation that drives many global health projects, and as a way to transform deep historical inequalities.

3. Working in-between

A final mode of relating involves the work of moving in-between different communities of practice. Anthropologists who study the unfolding of global health programs frequently serve as cultural brokers who mediate between experts and the people affected by experts’ visions for global health. Taking a biographical approach that tracks how health technologies transform as they are implemented, these anthropologists foreground that health practices have ‘social lives’ (Whyte, Geest & Hardon 2002), or what Ramah McKay (2018a) has called ‘afterlives’ in reference to how medical projects live on after official experts withdraw.

Anthropologists who move in between ‘everyday’ and ‘expert’ sites might find themselves translating information held by global health experts into an idiom understood by those whom experts hope to reach. They might also work in the other direction to bring knowledge gained through long-term, grounded engagement with everyday life to spaces of global expertise so as to improve health experts’ practices of design and dissemination. They might also do both (Vernooij et al. 2016; Manderson 1998; Hardin 2018). Moving in-between registers of practice can help to illuminate the expertise that lies in the so-called every day – for example, in the every day practices of community health workers who often refashion projects as they roll them out (Nading 2013; Maes 2014; Kalofonos 2014; Swartz & Colvin 2014) – while also showing how policy spaces are guided by their own cultures (Napier et al. 2017; Taylor 2003; Yates-Doerr 2018).

Global health anthropologists frequently find (or place) themselves amid controversies and disjunctures: spaces where conflicting normativities arise. One technique entails the explicit study of ethical disjuncture. For example, Jenna Grant unpacks the presumed universality of experimental research ethics by illustrating how different logics of ‘the good’ compete in an HIV pre-exposure prophylaxis trial (2016). Anthropologists who work with policy makers even as they study policy-making practices routinely draw attention to the frictions and even failures that happen when policy agendas are taken up in everyday life. In doing so, anthropologists do not simply emphasise the need to adjust interventions and pedagogies to be site-specific, but urge policy makers to learn to account for this adaptiveness in the design of their policies. The goal here is not to further Global Health in its own terms, but to illuminate the shortcomings or successes of its strategies.

Conclusion

At a 2009 Yale-based conference organised to celebrate fifty years of medical anthropology, Didier Fassin noted in a keynote lecture that ‘the obscure object of global health’ had rarely been problematised (2013: 96). Anthropologists would soon redress this. In fact, that very year an annual review on ‘Anthropology and global health’ (Janes & Corbett 2009) overviewed the work of more than 100 anthropologists engaged in a critical analysis of the globalization of bioscience. His lecture has served as a call for anthropology to critically unpack globality (asking, for whom is global health global?) as well as the need to open up the black box of ‘health’. Farmer, Kleinman, and Kim, in a similar vein, have pointed to how global health has existed as a collection of problems rather than a discipline (2013: xiii). And McKay (2018b) describes teaching global health as a ‘critical entanglement’, in the sense that anthropologists frequently critique global health interventions even as they use anthropological methods to participate in the work of global health.

This entry has suggested that global health and anthropology connect through an awkward relation. If global health is an ‘obscure object’ (Fassin 2013), so too is its anthropology. Indeed, one of the methodological approaches taken by anthropologists is to explicitly not know with confidence what is meant by global health but to instead follow, empirically, how global health is brought about in practices. As we’ve shown above, these practices include those of the anthropologists who work to shape, even as they might oppose, the terrain of the field.

While many economists and statisticians make use of the supposed objectivity of big data econometrics to make a strong claim to global health, Stacy Pigg (2013) notes that anthropologists might make a claim to global health themselves. That anthropologists use data that are typically not easily quantified – that anthropologists’ metrics are often lively and social (Verran 2001) – is, in fact, taken by many global health practitioners as a strength. The widespread failure of many global health projects has resulted in an appreciation and uptake of anthropological techniques in and beyond the centres of the field. The ‘awkward relations’ that are therein produced remain emergent and dynamic.

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Note on contributors

Emily Yates-Doerr is Assistant Professor at Oregon State University and the University of Amsterdam, where she holds a European Research Council Starting Grant for the project ‘Global future health: a multi-sited ethnography of an adaptive intervention’. She is the author of The weight of obesity: hunger and global health in postwar Guatemala (University of California Press, 2015). Follow her on Twitter at @eyatesd.

Emily Yates-Doerr, Faculty of Social and Behavioural Sciences, Universiteit van Amsterdam, Postbus 15509, 1001 NA Amsterdam, The Netherlands. e.j.f.yates-doerr@uva.nl

Kenneth Maes is Associate Professor at Oregon State University. He is carrying out collaborative research on the challenges and opportunities posed by community health work. He is the author of The lives of community health workers: local labor and global health in urban Ethiopia (Routledge, 2016).

Kenneth Maes, School of Language, Culture and Society, Oregon State University, 238 Waldo Hall, 2250 SW Jefferson Way, Corvallis OR 97331, United States. kenneth.maes@oregonstate.edu

[1] Available on-line: https://www.who.int/about/vision/global_health_agenda/en/

[2] Available on-line: https://www.who.int/gho/en/

[3] The terms ‘resource poor’ or ‘Global South’ have begun to take the place of earlier framings of ‘developing’ or ‘third world’. Each of these terms has problems (Fernholz 2016), reflecting the inherent difficulty of categorising diverse world regions through a shared ‘global’ agenda.

[4] Available on-line: https://www.un.org/millenniumgoals/bkgd.shtml

[5] Information can be found at http://www.ebola-anthropology.net/about-the-network/.

[6] https://opinion.inquirer.net/column/pinoy-kasi

[7] https://opinion.inquirer.net/byline/gideon-lasco

Disability

Felix Stein — Thu, 14 Jun 2018 16:21:51 +0000

Clara Devlieger

London School of Economics and Political Science

Initially published 14 Jun 2018

http://doi.org/10.29164/18disab

Abstract:

Disability is a form of difference that is created when the social participation of someone with an impairment is ‘dis-abled’ by normative expectations and material conditions. This entry reviews some of the key contributions anthropologists have made to studying disability as a socially constructed category. Disability is at once central and marginal to the anthropological canon. Grounded in fine-grained, long-term ethnographic fieldwork, anthropological studies of disability have drawn attention to the relational nature of disability as a category that is variable despite its quality as a universal human experience. This entry starts by explaining the difference between ‘impairment’ and ‘disability’ before reviewing the trajectory of anthropological studies of disability – in mostly Western industrialised contexts – from a ‘medical’ to a ‘social’ framework of understanding. It then turns to consider some of the theoretical orientations this has produced and examines a more recent shift to studying the lived experience of disability beyond the Euro-American west. It concludes by reviewing some of the developments in studying disability in recent years, in which scholars focus on social organization, technology, and personal, embodied experiences.

Introduction: disability and difference, disability and impairment

The experience of disability is both unique and universal. The embodied limitations of impairment are something all humans experience in either the very early or late stages of life (Davis 2006: 4; Kittay 1999). Disability is a form of otherness marked by such limitations: disabled people are often labelled as different from people who are able-bodied in one way or another. Unlike social categories such as gender, race, or generation, however, disability is a form of alterity that anyone can enter at any time, although disadvantaged groups have a higher chance of becoming disabled (Eide & Ingstad 2011; Puar 2017). Because all human bodies are vulnerable, researchers argue for anthropological attention to disability as essential to understanding human nature and diversity (Fineman 2008).

What is considered to be a disability in different sociocultural settings, however, is highly inconsistent. ‘Disability is a profoundly relational category, always created as a distinction from cultural ideas of normality, shaped by conditions that exclude full participation in society of those considered atypical’, Faye Ginsburg and Rayana Rapp assert, pointing to anthropology’s key contribution to the study of disability as a form of alterity that is ‘not simply lodged in the body, but created by the social and material conditions that “dis-able” the full participation of a variety of minds and bodies’ (2013: 54). This observation has led anthropologists, and disability scholars more widely, to establish disability as a category that is fundamentally socially constructed. It is not an impairment that creates a disability, but rather the incompatibility of impaired bodies with social norms and material environments that are determined by the able-bodied majority, and the discrimination that frequently follows.

While scholars differ in the terminology they use, they nonetheless agree that we cannot take terms and concepts such as ‘impairment’ and ‘disability’ for granted. Russell Shuttleworth and Devva Kasnitz, for example, choose to make an explicit distinction by defining impairment as ‘a negatively construed, cultural perception of a bodily, cognitive, or behavioural anomaly in terms of function or some other ethnopsychological or ethnophysiological status’, and disability as a negative social response to a perceived functional limitation (2004: 141). By using the hyphenated term ‘impairment-disability’ they seek ‘to problematize anthropologists’ use of these term and to highlight their relationship and the need for their analytical separation’. Ginsburg and Rapp similarly choose to draw attention to the complex and enduring ‘relation between embodied limitations and social discrimination’, by using ‘disability’ and ‘impairment’ interchangeably (2013: 54); I follow this model in this encyclopedia entry.

This entry aims to serve as a brief introduction to some of the historical highlights of anthropological engagement with disability as a fundamentally relational category.^[1]Anthropology is a latecomer to studying disability, but the discipline has made significant contributions to the wider field of disability studies rooted in the discipline's core methodology of long-term, fine-grained ethnographic fieldwork. The empirical ethnographic approach provides nuanced, penetrating ethnographies of the lived, embodied experience of disability and the social lifeworlds of disabled people. By considering personal views of what is disabling, anthropologists have thus contributed to deconstructing assumptions about normality and abnormality in cross-cultural settings.

From a medical to a social model

The earliest studies of disability by anthropologists were focussed on specific impairments from within a medical anthropology framework, while disability increasingly became part of mainstream social and cultural anthropology (Kasnitz & Shuttleworth 2001). Prior to the 1960s, for example, Ruth Benedict (1934) analyzed cross-cultural understandings of epilepsy, pointing out that a condition may be considered abnormal and undesirable in one sociocultural setting but a highly desirable characteristic of psychic manifestation elsewhere. Jane and Lucien Hanks (1948) similarly took an early cross-cultural perspective in their study of how a similar physical characteristic such as a scar has a different effect on status in a variety of settings.

Attention to disability in anthropology, however, became more prominent in the 1960s and 1970s, as the disability rights movement and Independent Living Model brought it into the public eye, particularly in North America. Robert Edgerton (1967) was the first anthropologist to make disability a focus of study with his work with people with what was then called ‘mental retardation’ or intellectual disabilities in the 1960s. His monograph, The cloak of competence (1967), drew attention to the historical changes in American institutional public life, as the inhabitants of asylums were moved to communities as part of an international movement dedicated to closing asylums. As people adapted to living in mainstream society after a life in long-term institutionalization, Edgerton highlighted the strategies they developed to counteract the stigma in their lives and learn to 'pass' as normal.

It was in the 1970s and 1980s, however, that medical anthropology started to provide a fertile space for ethnographic work on impairment-disability. Louise Duval (1986) initiated the Disability and culture newsletter and founded the first Disability Research Interest Group as part of the Society for Medical Anthropology, providing a forum for social science studies of disability and a presence at the yearly American Anthropological Association (AAA) meetings (Kasnitz & Shuttleworth 2001). Gelya Frank brought a pioneering phenomenological perspective in her book, Venus on wheels (2000 [1982]). Frank provided a personal perspective – rare for its time – of the life of an American woman named Diane DeVries, who was a ‘congenital amputee’, a woman born without arms or legs. Where previous studies had focused on symbolic descriptions of disability by outside observers, Frank’s portrayal of DeVries’s personal perspective was part of a wider shift in anthropology from objectified representations of the body to subjective experiences of living through the body. This approach highlighted the lived experience of disability: Frank questioned common perceptions of DeVries as someone who was missing arms and legs and considered instead DeVries’s personal experience of ‘normalcy’. Frank also reflexively explored the development of her long-term relationship with DeVries, where research transformed into friendship and care, involving a deeper level of personal involvement and self-disclosure than was customary for the time.

Several of these anthropologists started to provide a critique of medicalization from within medical anthropology itself. 'Medicalization' refers to treating disability as a technical, medical problem. In this framework, the individual impaired body was central, and medical conceptions of disease and healing were used to explain disability, thus directing focus towards cause and cure, or therapeutic transformation. Such a biomedical model of disability became criticised as carrying an assumption that disability is a negative problem of individuals. Disability scholars, consequentially, became people with a ‘mandate’ to make disabled people ‘normal’ (Shuttleworth & Kasnitz 2004: 142). An alternative framework that considers instead the cultural and social factors that underlie understandings of disability has been glossed as the ‘social model’ in anthropology and wider disability studies (Shakespeare 2013), a refinement that draws attention to how social and material conditions shape impairment into disability.^[2]

Nora Groce and Joan Ablon, among others, were part of this paradigm shift from ‘the clinic to the community’ (Whyte & Ingstad 1995: 4). Groce (1985) chose to highlight community creation and communicative practices in her study of deafness on the island of Martha’s Vineyard, Massachusetts.^[3] In this insular community, hereditary deafness was so common that deafness was not considered unusual and the hearing population learned sign language. Because all inhabitants were able to participate in public life, being deaf was thus not considered to be disabling. The title of her book, Everyone here spoke sign language, highlights how normality is defined socially, as sign language was a part of local public culture for deaf people as much as for the hearing population.

Medical anthropologist Joan Ablon (1984; 1988; 1999; 2010; for a comprehensive review of her work see Shuttleworth & Kasnitz 2004) influenced generations of anthropologists interested in disability with her work on the lives of stigmatised groups of people with genetic differences, such as the ‘little people’ of America (1984). Her ethnographic approach focused on their support networks and strategies of normalization, privileging the lived experiences and voices of her research participants. Her work has been considered pioneering for shifting the focus from individual bodily difference as a source of disability to the social reactions of the community as disabling. Her ethnographic focus contributed to broadening the scope of disability studies beyond the therapeutic interests of medical anthropology for the study of disability and behavioural, cognitive, or physical difference.

Studies such as those by Groce and Ablon reframed disability more in terms of identity and difference than in terms of ill health. While dynamics of illness and disease are clearly relevant to disability studies, as Staples and Mehortra (2016: 39) point out, ‘bodily states that, in certain contexts, underpin disability do not necessarily define individuals as ill or as suffering, but sometimes as different in ways that may be valued in their own right.’ In his History of disability, Henri-Jacques Stiker (1999), for example, argued that societies reveal themselves in how they manage difference. He gave a Foucauldian genealogy of how disability emerged as a category of difference in western societies that was not initially distinguished from other types of poverty, but developed into a category of bodily abnormality. In communities of people with disabilities, shared experiences can form the basis of a subculture or culture, such as Deaf culture (see, e.g., Breivik 2013; Groce 1985; Friedner 2015a; Green 2014; Nakamura 2006). Cultural identification with deafness is represented by capitalising ‘Deaf’ where the lower case spelling ‘deaf’ refers to the audiological condition (see e.g. Baynton 2015); referring to both simultaneously is written as ‘d/Deaf’ or ‘D/deaf’. People who identify as d/Deaf sometimes reject labels of disability in favour of being viewed as a linguistic or cultural minority (e.g. Fjord 1996; Haualand 2007). While the idea of Deaf culture that crosses other boundaries is mainstream, researchers also warn of the dangers of imposing a single minority group identity onto a very diverse group of people (e.g. Mugeere, Atekyereza, Kirumira, & Hojer 2015; Susman 1994; Zola 1993).

Stigma, liminality, and reconciling the exceptional with the ordinary

The studies above have been influenced by theoretical approaches that emphasise difference.^[4] Analytical orientations around stigma and liminality have been particularly influential in interpreting ethnographic data. The sociologist Erving Goffman (1963) famously described stigma as the result of deviance. If we understand deviance as ‘deviation from prevalent or valued norms’, stigma is then ‘the evocation of negative responses’ (Susman 1994: 15, 16) or, in Goffman’s words, having a ‘spoiled identity’ due to an ‘attribute that is deeply discrediting’ (1963: 13). Because disabled bodies stray from the norm and are often socially devalued as a result, a host of anthropologists have used the concept of stigma to theorise their experience.^[5]

Other disability scholars have preferred to analyze difference in terms of liminality (e.g. Barrett 1998; Stiker 1999). In developing the concept, Victor Turner referred to the context of ritual to describe liminal entities as ‘neither here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremonial’ (1969: 95). The disabled anthropologist Robert Murphy (1987) considered the concept of ‘liminality’ more suitable than stigma to describe the implicit and subtle discrimination he encountered during his own process of becoming gradually paralyzed in the United States due to a spinal tumour, an experience that is the subject of his influential book, The body silent. He connected a lack of acceptance to the status of long-term, physically disabled people as ‘undefined, ambiguous people’ (1995: 154). They were in-between dominant American understandings of normality: ‘neither sick nor well, neither dead nor fully alive, neither out of society nor wholly in it’ (1995: 153-4).

Goffman’s approach to stigma in particular continues to be highly influential, but simplified accounts of stigma that focus on individual bodily differences alone to the detriment of wider contextualising factors such as politics, gender, or age have been widely criticised in favour of more nuanced ones (e.g. Shuttleworth 2004; Murphy 1987; 1995; Staples 2011b). Michele Friedner (2015), for example, draws on her fieldwork with deaf multilevel marketing employees in India to argue for a rethinking of stigma. Such businesses produce a space where deafness can function as a valued condition, allowing deaf people to work almost exclusively with other deaf people and transform social networks into financial capital. Stigma, she argues, can thus be a source of inclusion as much as exclusion. Bearing such critiques in mind, Friedner and others (see, e.g., Devlieger, Rusch, & Pfeiffer 2003; Staples 2011b) argue for an approach that reconciles the exceptional and ordinary aspects of the lives of disabled people. While discrimination may play an important role in their lives, they pursue the same goals as other people.

Beyond the Euro-American west

The roots of most scholarship on disability are in the civil rights movements of the 1960s, particularly in the disabling contexts of industrialization and the rise of capitalism in the Euro-American west. The vast majority of disabled people, however, live elsewhere, and anthropologists interested in disability have increasingly turned their attention to how cross-cultural understandings of disability may challenge dominant assumptions based on theorising in Euro-American environments.

Disability was explicitly put onto the worldwide public agenda in the 1980s, when the United Nations declared 1981 as the International Year of Disabled Persons, followed in 1983 by the beginning of the United Nations’ Decade for Disabled Persons. Scholars working beyond Europe and America thus frequently draw attention to the connections between the global and the local to avoid assumptions of isolated social worlds, while simultaneously underlining the danger of imposing western models on diverse sociocultural contexts (Ingstad & Whyte 2007). Inhorn and Bharadwaj (2007), for example, draw attention to the local effects of new reproductive technologies in Egypt and India, as wider access to IVF treatment puts the problem of infertility in the public eye. In these pro-natal countries, infertility is considered to be an impairment of personhood with deeply disabling consequences, whereas it is not explicitly understood as a disability in the Euro-American contexts.

Benedicte Ingstad and Susan Whyte (1995) highlighted diverse examples from Nicaragua, Borneo, and various African countries in a pioneering volume to underline that the concept of disability itself cannot be taken for granted (see also Grech & Soldatic 2016). Outside the influence sphere of the liberal identity politics of the Euro-American west, ‘disability’ as a unified umbrella term either does not exist or is a very recent category applied to people: ‘there are blind people and lame people and “slow” people, but “the disabled” as a general term does not translate easily into many languages’ (Ingstad & Whyte 1995: 7). The volume focussed on cultural and social circumstances to underline that conceptualizations of impairment and disability need to be considered within specific local worlds.

Some anthropologists thus find more value in using vernacular classifications over the English umbrella term ‘disability’ (e.g. Kohrman 2005; Geurts 2003; Livingston 2006), and several have documented how ‘disability’ comes into being and develops as a category in parallel with changing social attitudes. Following the changes in terminology and language is one way of drawing attention to these developments (see e.g. Stiker 1999; Zola 1993). For example, in his monograph, Bodies of difference, Matthew Kohrman (2005) described how disability emerged as a category of persons in China in the late twentieth century when gathering statistics became one of the state’s techniques of creating a ‘biobureaucracy’ of welfare. The term canji developed from a rarely-used term into a common umbrella designation like the English ‘disability’ when people labelled as such became able to make claims on the emerging welfare state. While canji was non-existent in rural areas, in urban areas it became enmeshed in many locals' daily lexicon and their mode of apprehending existence. Kohrman’s analysis also demonstrated how disability was embraced as an object of policy as a result of the interventions of the China Disabled Person’s Federation, founded by the charismatic disabled son of a prominent Communist leader. Advocating for disabled people brought them into visibility on a national level while also helping China gain recognition on the world stage. While disability can become a category through top-down initiatives, as in Kohrman’s case study (cf. e.g. Petryna 2002; Phillips 2010), other examples demonstrate how disability can evolve into a collective identity thanks to communities that form around treatment institutions of particular afflictions, such as leprosy (Silla 1998; Staples 2007), and/or around economic niches dominated by people with disabilities (e.g. Friedner 2015; Devlieger 2018).

Different notions of personhood have been central to analyzing how people with impairments live in local social worlds (Ingstad & Whyte 1995; Jenkins 1998). Considering conceptualizations of the self, anthropologists studying disability apply wider observations that in many societies, being a person is defined more in terms of a ‘sociocentric’ value of being connected to other people than it is in contexts where personhood runs parallel with individualism. One theme that is consistently relevant in this respect is how the cultural values of equality and (in)dependence define personhood in different settings and consequently affect understandings of disability. The negative effects of stigma in western societies, for example, are often tied to a negative conception of dependency in societies that assume the primacy of individuality and the subsequent difficulties in engaging in wage labor.^[6] During Murphy’s (1987) process of becoming paralyzed, for example, he found that he was resented and stripped of status and identity because his very existence subverted an ‘egocentric’ American dream of self-reliance and personal autonomy.

In descriptions of disability in many other societies, by contrast, the more ‘sociocentric’ value of being a member of a community or a family may outweigh individual ability as a value, and have consequences for perceptions of disability (see, e.g., Ingstad & Whyte 1995: 11). In Julie Livingston’s (2005; 2006) analysis of ‘debility’ in Botswana, for example, Tswana notions of kinship and personhood stress the permeability of the body: bitter, angry, or jealous feelings have the potential to harm, while love and sympathy can help to sustain and strengthen.^[7]Because people are interconnected, the disruption of a person’s mental or physical competences are viewed as the consequence of the negative actions of others. This sociocultural conception of dependent personhood does not free Tswana people from disability stigma but places the emphasis elsewhere: the bulk of the stigma may be directed towards the mother of a disabled child, if her child is considered as living proof of her deviant sexual behaviour (Livingston 2006: 122). Scholarship on disability has thus pointed out that values that are often taken for granted in western settings such as individuality, equality, and independence may clash with notions and aspirations of interdependency in other settings. When these values are promoted in universal (human) rights-based ideas such as those of the Independent Living Movement, they may be irrelevant or even harmful (Staples & Mehrotra 2016).

At the same time, anthropologists interested in disability are quick to caution against constructing false dichotomies between ‘individualistic’ Northerners and ‘communitarian’ Southerners. ‘The real challenge’, Ingstad and Whyte argued, rather ‘lies in understanding the way particular characteristics, be they impairments or gifts, inhibit or facilitate individual achievements and relational integration in a given cultural world’ (1995: 11). In negotiating opportunities, different sets of values can be called into play and may change according to sociocultural context and historical transformation. Livingston (2005), for example, traces a historic increase in cases of chronic illness and debilitating accidents in Botswana that disrupt expectations about health, ‘debility’, and care over the course of the twentieth century. ‘Sociocentric’ expectations of intergenerational caretaking are disrupted as young men and women increasingly leave the rural agricultural economy to engage in wage labour. As social value shifts from an emphasis on experience towards the ability to sell able-bodied labour, society changes from one where a practice of family ‘care’ is central, to one where care for the debilitated is increasingly seen as the responsibility of the state. Issues such as stigma or personhood thus must be seen in interaction in actual social contexts, where attitudes towards and perceptions of disability are shaped by wider dynamics.^[8] Nuanced contextual material is essential for cross-cultural comparisons to go beyond superficial similarities and differences, and to go further than simply modifying western models to other settings.

Recent developments

Citizenship and belonging

In recent years, disability scholarship has turned to concentrate on sociopolitical organization and embodied experiences. In 2007, Ingstad and Whyte published a second influential edited volume, Disability in local and global worlds. The case studies therein focused on connections between the local and the global, considering the ‘uneven processes of change that can be traced as ideas and technologies spread’ (Ingstad & Whyte 2007: 3). Under this rubric they trace the spread of the international disability rights movement, noting that for most disabled people, political awareness may be spreading more rapidly than the conditions to improve their lives. Their volume included topics such as human rights, citizenship, eugenics, progressive politics, and social movements. As Ginsburg and Rapp (2013: 58) sum up, these themes characterise emerging work on disability in recent years, not only in anthropology but also in disability studies in general.

Several researchers have demonstrated how disabled people and their families perform belonging in local environments marked by kinship and ethnicity. Veena Das and Renu Addlakha (2001) use examples from Delhi to demonstrate how citizenship can be enacted in the domestic sphere as much as in civil society associations, where different kinds of publics are created in relation to families with disabled family members. Rapp and Ginsburg (2001) use ethnography from the United States to demonstrate that disability entails a rewriting of kinship: disability can create a sense of relatedness across embodied difference. Dossa (2006; 2009) weaves together life histories of disabled Canadian Muslim immigrant women who claim their humanity by affirming identities as women and mothers where they are stigmatised as racialised disabled women. In Nakamura’s (2006) case study of Japanese d/Deaf people, her interlocutors prefer to be referred to as a linguistic minority due to negative associations with Japanese minority ethnicities.

Other studies consider how citizens assert belonging outside the familial sphere to interact with neoliberal businesses (e.g. Friedner 2015), religious organizations (e.g. Goldstone 2017), and state workers (e.g. Kohrman 2005), among others, in negotiating access to welfare resources. Elizabeth Davis (2012) considers the effects of psychiatric reform in Greece, where the modern liberal state invests in a ‘rights’-oriented biopolitical project that requires patients to be responsible and cultivate autonomy. Adriana Petryna (2002) and Sarah Phillips (2010) focus their attention on the struggle for disability pensions in post-socialist Ukraine, where people affected by the aftermath of Chernobyl fashion themselves as ‘biological’ citizens (Petryna), and people with spinal cord injuries use creative strategies to assert claims to a ‘mobile’ citizenship (Phillips). In both cases, disabled people find themselves performing a ‘balancing act’ (Phillips 2010: 7) between Soviet and post-Soviet models of disability, as state-based support is scaled back for citizens who were previously considered entitled. Disability is equally contested in Gabrielle Kelly’s (2017) case study in South Africa, where doctor-patient encounters are sites of negotiation over who counts as disabled in allocating rights to welfare and health resources.

On the more global/international level, the recent 2008 United Nations Convention on the Rights of People with Disabilities (UNCRPD) has been central to many local struggles for recognition (Meekosha & Soldatic 2011). Several disability activists have embraced the UNCRPD as a toolkit with which to challenge citizenship status and practices, but the Convention is often nationally ratified but not fully implemented. Ethnographic case studies demonstrate that access to (inter)national disability rights often intersects with local models of patronage (Grischow 2015), racial politics (Puar 2017), and corporate social responsibility (Friedner 2015). Sometimes, rights activism may have unintended consequences. In Friedner and Osborne’s case study in India, ‘disability activists derive moral authority and position themselves as participating in imagined universal disability communities while professional access auditors position themselves as technical experts alone possessing “real” knowledge’ (2013: 58). A policy instrument that renders disability into a universal category needs to be studied in considering how disability is perceived within local models of intersecting corporeity (Meekosha & Soldatic 2011).

The effects of technology

Changing access and desires for rights are often affected by technology (Whyte & Ingstad 2007: 18-21). Nuanced ethnographies point out the potentially double-edged consequences of technologies that are not (only) intended for disabled people (such as communication technologies and the media) as well as technologies that are meant to enhance their quality of life (such as sign languages, mobility aids, hearing aids, or braille). Cassandra Hartblay (2017), for example, considers how talk about wheelchair ramps in Russia is embedded in moral obligations between citizens and the state. When such infrastructure is more aesthetic than accessible, the failed design draws attention to how the idea of access circulates as a teleology of progress without necessarily meeting users’ needs. Ideas about progress equally play a role in Kohrman’s (1999b) analysis of cycle technologies in China. Urban men who struggle to walk can adopt hand-crank tricycles and motorcycles thanks to the initiatives of a state-run federation, but while their physical mobility may increase, the technology draws attention to the fact that they have difficulty walking, thus paradoxically increasing their negative associations with immobility. The virtual world can both augment the sense of agency of disabled people and have disabling effects, as Boellstorff (2015) finds in his ethnography of the online world Second Life. Paul Antze (2010) also underlines this point, demonstrating how people diagnosed with autism use social media to simultaneously embrace and reject the label of disability. Social media provides a mode of communication and a forum for the neurodiversity movement, but a talent for expression may undermine one’s credibility as being autistic.

Medical technology in particular increases the capacity to diagnose and define impairments. Improvements in prenatal screening and eugenic technology, for example, make it increasingly possible to choose whether or not to have an impaired child (Landsman 2008). Anthropologists describe the experiences of parents who have access to such technologies and find themselves before weighty moral dilemmas, unwittingly becoming, in Rayna Rapp’s words, ‘moral pioneers’ when choosing for disability (Rapp 2000; see also Gammeltoft 2013). Choosing to change (dis)abilities is equally controversial: the use of cochlear implants for deaf children, for example, has led to worries about the eradication of Deaf culture (Blume 2009): such devices are implanted surgically, and provide sound through an electromagnetic interface. The increased capacity to diagnose has also prompted the creation of new categories such as genetic ‘abnormalities’ (Berghs 2016: 27) and an upsurge in awareness of conditions such as mental illness, emotional disabilities, and learning disabilities. Petryna (2002), for example, describes how science becomes a key resource for negotiating ‘biological citizenship’ for the rapidly-growing population claiming radiation exposure as a new category of impairment in order to access government-sponsored healthcare after the Ukrainian Chernobyl disaster. Anthropologists have also considered the effects of the contemporary rise of autism awareness (see Solomon 2010). Antze (2010) describes the tension between the medical and the social where people diagnosed with autism underline the diversity of autism, but must credibly embody the condition they represent to be taken seriously. In the words of Whyte and Ingstad, sensitive ethnographies often demonstrate a tension between the capacity of technology to break the silence and the risk to medicalise disability ‘by defining it as a disease that can be treated (at private clinics!) rather than a difference that can be accepted and lived with’ (2007: 20).

Reflexivity, narrative, and embodiment

Personal experiences of what is disabling has long been a central part of ethnographic descriptions of disability. As Ginsburg and Rapp set out (2013: 56-7), a significant literature of reflexivity and autoethnography by disabled anthropologists and those in their environments as well as a focus on narrative approaches have been essential to situating disability in a broader terrain.^[9] Cheryl Mattingly (2010), for example, draws on long-term research with low-income African-American families to consider the role of narrative in illuminating links between meaning making and experience. Her most recent ethnography (2014) considers the everyday ‘moral laboratories’ in the lives of African-American families with children with chronic medical conditions to foreground their struggle for a good life as affected by constant uncertainty. Mattingly refers to ‘moral laboratories’ as a metaphorical realm in everyday spaces like soccer fields or clinic waiting rooms where people experiment in action and in narrative, which ultimately changes the way they view their children and their environment.

These orientations have been related to exploring the paradigm of embodiment and phenomenological approaches, sometimes presented as alternatives to the ‘medical’ or ‘social’ model (e.g. Gammeltoft 2008; Berghs 2016: 31-2). Such approaches help to ‘bring the visceral, experiencing body back into the picture’ (Staples & Mehrotra 2016: 42), while exploring how the subjective experience of disability intersects with political, medical, and religious forms of subjectivity.^[10] Exploring the subjective experience of mental illness in contemporary Indonesia, for example, Byron Good and his colleagues (2007) find that the intimate experience of acute psychosis is related to different forms of subjectivity. In an environment with growing access to the expanding global pharmaceutical industry, medical and religious subjectivities come into conflict in the case of a patient who rejects medication in favour of prayer, thus rejecting a biomedical subject position for a spiritual one. Good and colleagues furthermore demonstrate how experiences of psychosis are entangled with Indonesia’s postcolonial history: the madness of the psychotic is discursively related to the madness of violent crowds. In her work with Anlo-Ewe-speaking people in south-eastern Ghana, Kathryn Geurts (2003) finds that experiences of disability are intimately connected to a sensorium where balance is a sense, and upright posture and balancing are essential components of being human. She finds that a western five-sense model has little relevance in Anlo culture, and much perception, including a sixth-sense notion of intuition, falls into the polysemous notion of seselelame, ‘feeling in the body, flesh or skin’ (2003: 10). Descriptions of how one moves, and how people think about this, represent a way of being-in-the-world that is socially reproduced and even imbued with moral meaning.

Conclusion

Anthropological studies of disability are late in coming, but they point out that while disabling experiences are universal, they are simultaneously shaped by a wide configuration of specific circumstances. Such contributions have a foundation in the discipline’s core methodology of long-term ethnographic fieldwork, giving solid evidence that disability as a category is fundamentally relational, a form of alterity created by sociocultural ‘disabling’ conditions, and one that is entangled within complex webs of other identities and social dynamics such as generation, gender, or ethnicity. The long-term engagement that comes with anthropological fieldwork makes it possible to pick up on these complexities, bringing nuance to the study of liminality or stigma, while deconstructing assumptions about ‘normalcy’. The studies thus demonstrate how people live in a balance between experiences of marginalization and the possibilities within such constraints.

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——— 2007. Introduction: disability connections. In Disability in local and global worlds (eds) B. Ingstad & S. R. Whyte, 1-29. Berkeley: University of California Press.

Zola, I. K. 1993. Self, identity and the naming question: reflections on the language of disability. Social Science & Medicine 36(2), 167-73.

Note on contributor

Clara Devlieger is a research fellow in social anthropology and African studies at Cambridge University. Her research focusses on disability and values in the Democratic Republic of Congo.

Dr Clara Devlieger, Department of Social Anthropology, Free School Lane, Cambridge CB2 3RF, United Kingdom. cmjd3@cam.ac.uk

[1] For comprehensive reviews of anthropological literature on disability, see: Kasnitz & Shuttleworth 1999; Kasnitz & Shuttleworth 2001; Shuttleworth 2004; Whyte & Ingstad 1995; Whyte & Ingstad 2007; Reid-Cunningham 2009; Ginsburg & Rapp 2013; Staples & Mehrotra 2016; Berghs 2016: 26-43.

[2] Many of those who adhere to the social model explicitly use the term ‘disabled people’ to emphasize disability as something that is imposed on people with impairments (Shakespeare 2013). Those who prefer the term ‘people with disabilities’, in turn, adhere to a people-first approach, choosing to emphasize personhood first and disability as a secondary identity (Michalko 2002: 10-1). The controversy about preferable terminology has been particularly salient in the United States (Albrecht, Seelman, & Bury 2001: 3). While some anthropologists make their choice of terminology explicit, others use both interchangeably. ‘Disabled people’ is more common in the United Kingdom, while ‘people with disabilities’ tends to be more mainstream in the United States and elsewhere.

[3] See Becker 1980; Kisch 2008; Kusters 2010; see also Gwaltney 1970; and Deshen 1992 for community creation between people with impaired sight.

[4] Theoretical approaches to difference include considering deviance (e.g. Susman 1994), labelling (e.g. Zola 1993), anomaly (e.g. Shuttleworth 2004), stigma (Goffman 1963), or liminality (e.g. Murphy 1987).

[5] See, for example, Ablon 1984; 1988; Becker 1980; Edgerton 1967; Friedner 2015; Shuttleworth 2004; Stiker 1999.

[6] See, e.g., Fraser & Gordon 1994; Fineman 2004; Kittay 1999; Davis 2012; Frank 2000.

[7] Livingston prefers the term ‘debility’ over ‘disability’ in order to broadly encompass ‘both the frailties associated with chronic illness and aging and … the impairments underlying the word disability’ (2005: 6; see also critique by Ingstad 2007). Jasbir Puar (2017) similarly adopts the term ‘debility’ over ‘disability’ with a different purpose: to highlight the interaction between bodily injury and social exclusion, foregrounding ‘the slow wearing down of populations instead of the event of becoming disabled’ (2017: xiv).

[8] These dynamics including kinship structures (Das & Addlakha 2001; Kohrman 1999a; Livingston 2006), gender norms (Kohrman 1999a; Murphy 1987), national politics (Kohrman 2005; Renne 2010), economic opportunities (Devlieger 2018; Friedner 2015; Staples 2007), ethnicity (Mugeere, Atekyereza, Kirumira & Hojer 2015; Nakamura 2006), religion (Gammeltoft 2008; Mugeere, Atekyereza, Kirumira & Hojer 2015), and/or migration (Dossa 2009).

[9] For examples of reflexivity and autoethnography see, e.g., Murphy 1987; Landsman 2008; Grinker 2008; Martin 2007. For examples of narrative approaches, see, e.g., Breivik 2013; Frank 2000; Phillips 2010; Nakamura 2013; Dossa 2009; Rapp & Ginsburg 2001.

[10] See, for example, Frank 2000; Kohrman 1999a.

Adoption

Felix Stein — Thu, 07 Jun 2018 11:20:08 +0000

Jessaca Leinaweaver

Brown University

Initially published 7 Jun 2018

http://doi.org/10.29164/18adopt

Abstract:

What is adoption? To answer this question is to jump directly into one of the key controversies of anthropology: anthropologists, associated for over a century with the close study of kinship relationships, are quite hesitant to privilege ‘biological kinship’ over ‘social kinship’, and the category ‘adoption’ may unwittingly do that. On the other hand, reviewing what anthropologists have learned about adoption, fostering, and child welfare reveals some important understandings of how people make families and become parents and children to one another. Those findings resonate with what the great social scientist Émile Durkheim contended more than a century ago: that kinship is social or it is nothing. Adoptions around the world demonstrate that the intentional claiming of a kinsperson or a kin group, and the everyday acts (both by ‘adopter’ and ‘adoptee’) that are associated with bringing that person more fully into that family, are not practices limited to adoption but are in fact the stuff of all kinship. Because examining ‘adoption’ reveals the processes of social kinship, it offers us a direct route into understanding the social practices that are part of how all families come to be.

After examining these larger issues, the entry considers what adoptions around the world look like and what they accomplish. The word ‘fostering’ often describes the practices of raising, training, and caring for a child. By contrast, ‘adoption’ in its early formulations, such as in Roman law from which many contemporary Western adoption policies descend, emphasised the acquiring of a legal heir and the transfer of property via inheritance. The entry concludes with a discussion of recent critiques of international adoption, which have demonstrated that adoptions may also, among the many things they accomplish, reproduce local and global inequalities.

The basic problem: critique of the study of kinship^[1]

The problem with defining ‘adoption’ for an encyclopedia of anthropology is this: on the one hand, what anthropologists know about adoption is evidence for some of our most central tenets; particularly that kinship is produced through social, linguistic, and legal practices rather than asserted through genetic codes. On the other hand, the very category ‘adoption’ unintentionally runs counter to those tenets. First, I’ll explain this central contradiction, then I’ll go on to show what anthropologists know about adoption and why it’s important – and only then will I define it.

One of the foundational principles of socio-cultural anthropology is its critique of ethnocentrism, which is the assumption that one’s own ways of doing things are superior to all other ways, leading to misunderstanding of other cultures and their norms and practices. By studying cultures around the world, anthropologists have learned that diversity is the norm. In other words, every culture has its own assumptions about what is true and what isn’t, so our job is to understand each culture in its own terms rather than imposing our own, whatever they may be.

The stated ethical incompatibility between anthropology and ethnocentrism came to a head in the 1960s and 1970s critiques of our discipline, which included as one major component a critique of kinship studies on the basis of embedded ethnocentrism.^[2] David Schneider, in a critical tone, suggested that the ‘anthropological’ notion of kinship is simply borrowed from a European one (1984: 175). As he wrote, anthropology’s generalised understanding of ‘consanguinity, of blood relationship and descent, rests on precisely…the biogenetic relationship…We have tried to impose this definition of a kind of relation on all peoples...’ (Schneider 1984: 72).

It’s easy to see how this critique can be extended to the term ‘adoption'. Vern Carroll, comparing adoption in the United States with fosterage in Eastern Oceania, asks whether it is wise ‘for anthropologists to use this term [‘adoption’] to label customs that conform only in part to adoption practices in Europe and the United States’ (1970: 4). Adoption, like kinship, has been used to describe a wide range of practices. Yet lurking within this term, it seems, is the subtext of what it means among middle classes in North America and Europe. So if, as David Schneider proposes, ‘[i]n American cultural conception, kinship is defined as biogenetic’ (1980 [1968]: 23), adoption in the U.S. will be a legal and acceptable ‘fiction’ within a larger assumption that ‘[a] son or daughter by definition shares its parents' biogenetic substance’ (1980 [1968]: 50; see also 1984: 54-55). Later, in his Critique of the study of kinship, Schneider suggests pointedly that ‘anthropologists have consistently treated adoption as something quite different from true kinship’ (1984: 171-2).

As such, by even so much as marking out a category called ‘adoption’, this encyclopedia entry runs the risk – amply critiqued by Needham (1971), Schneider, and others – of elevating biogenetic kinship to the unmarked or ‘natural’ category, and studying adoption only as something curious that deviates from the ‘norm’.

What adoption does

And yet, anthropological research on that very category of ‘adoption’ has revealed two crucially important points: adoption is neither curious in terms of rarity, nor is it curious in terms of supposed deviation from a norm that is biological kinship. Rather, adoption is widespread, and is brilliantly revelatory of the processes central to the making of all kinship.

Firstly, adoption is far from unusual – over time and across place, it has been crucial to maintaining power relations, ensuring social reproduction, and forming alliances, and it has been and continues to be numerically significant as well. For example, Elise Berman has reported that for the 250-person village in the Republic of the Marshall Islands where she worked, a quarter of children are adopted and an astonishing ‘90 percent of households include someone adopted in or out’ (2014: 579).

But secondly, and perhaps more importantly, studying adoption has helped anthropologists to demonstrate that all kinship is adoptive. In other words, no matter whether blood ties are asserted or recognised in a particular relationship, that relationship requires upkeep, assent, and intentional or matter-of-fact fostering. As Émile Durkheim wrote more than a century ago, kinship is ‘a social bond or it is nothing’ (1896: 318).^[3]

Durkheim’s discussion of adoption makes clear why adoptions are such an important piece of evidence for kinship theory. Writing of adoption in small-scale societies, Durkheim notes ‘[b]y itself, birth is not sufficient ipso facto to make an infant into an integral member of the domestic group – religious ceremonies must be superimposed. The idea of consanguinity is thus secondary… All kinship is social, consisting essentially of socially sanctioned legal and moral relations’ (1896: 318). ^[4]Another similarly pithy way to say this comes from the groundbreaking work of Kath Weston in 1980s San Francisco on gay and lesbian ‘families we choose’: groups of close friends and companions who were sometimes described by anthropologists as partaking of ‘fictive kinship’ (a term that has been part of anthropological usage at least since the nineteenth century^[5]). ‘All kinship’, Weston says, ‘is in some sense fictional’ (1991: 105).

By itself, as Durkheim proposes, birth is not sufficient to establish belonging to kin: ‘kin work’ is required. This latter phrase is Micaela di Leonardo’s; she coined it in a groundbreaking essay, where she used it to mean

the conception, maintenance, and ritual celebration of cross-household kin ties, including visits, letters, telephone calls, presents, and cards to kin; the organization of holiday gatherings; the creation and maintenance of quasi-kin relations; decisions to neglect or to intensify particular ties; the mental work of reflection about all these activities; and the creation and communication of altering images of family and kin vis-à-vis the images of others, both folk and mass media (1987: 442-3).

To di Leonardo’s useful intervention we might simply add that ‘kin work’ need not be limited to ‘cross-household kin ties’ (e.g., writing to in-laws or inviting a cousin to your house). Similar to the process of kin-work, ‘kinning’, as proposed by Signe Howell writing on transnational adoption in Norway, can indicate ‘the process by which a foetus or new-born child is brought into a significant and permanent relationship with a group of people, and the connection is expressed in a conventional kin idiom’ (2006: 8). Within one’s household, ‘kin work’ or ‘kinning’ can involve activities as wide-ranging as teaching a child manners (claiming that child as yours and representative of your household, concerned about how he or she will interact with the social world), or giving a sibling the silent treatment (withholding the normative relations of kinship from someone who, perhaps, has failed to act like a sibling is expected to act).

One form that kin work or kinning can take is verbal. Linguistic and cultural anthropologists have paid close attention to how talk can establish or attenuate kinship. An excellent example is provided in Sallie Han’s writings on ‘belly talk’. In middle-class U.S. households, fathers-to-be receive advice to ‘talk, read, and sing to the baby [that is, the foetus]’ so that they are recognised by others as expectant fathers, and so that they can be involved with their future children. Such ‘belly talk’, Han argues, ‘accomplishes important cultural work for American mothers and fathers alike...[it] socializes women and men as parents’ (2009: 312, 316). Yet speech and representation are equally mobilised to accomplish similar work in adoptive relations – for example, in Japan, Kathryn Goldfarb’s research participants often highlighted physical resemblance between foster parent and child as a way of signalling the ‘“self-evident” proof of a connection to a non-biologically related child’ (2016: 48). This is one example of a feature of many adoptions, though not all: they are often partly produced through and supported by the involvement of mediators, from the official (social workers and attorneys) to the everyday (like those Goldfarb describes, who participate in conversations about family resemblance).

The ‘kin work’ done by these individuals incorporates newcomers – children and children-to-be, parents and parents-to-be, and still other kin as well – into families. That work of incorporation, I propose, is adoption.

What is adoption?

More than a quarter of the way through this entry, I can finally come to define the topic. Adoption is, I suggest, the purposeful taking on of a kinship role, responsibility, or duty vis-à-vis another person. I’ve tried to make that definition as simple and open as I can, in part because there is a lot of variability in what anthropologists might label ‘adoption’. It could be primarily about – as seen in the earliest adoption laws in ancient Rome – formally identifying an heir. It could be, on the other hand, a kind of fostering – taking care of a young person – not focused on inheritance but instead on the acts of raising.^[6]

So, one way of answering ‘what is adoption?’ is with another question: ‘Well, it depends – what needs and expectations do people have of their families in the cultural context you are wondering about?’ In much of North America and Europe, a ‘sentimentalization’ or ‘sacralization’ of childhood (Zelizer 1985) has occurred over the course of the last century, so that what adoption is for residents of those regions today is a parent-centric institution that provides children to adults who eagerly want to love, raise, and care for a child.^[7] Marilyn Strathern, observing the cultural implications of assisted reproductive technologies (which, depending on how they are defined, can include adoption), remarks that a child in such a context embodies ‘the desire of its parents to have a child’ (1992: 32). Problems or challenges within adoption in this setting will arise when the model of parental desire for a child conflicts with other aspects of social reality: for example, if prospective parents want infants whom they can raise and mould (Leinaweaver 2013: 38-46; Stryker 2010), but the available children are toddlers or school-age.

But in other cultural contexts around the world and throughout history, adoption is something else. There are several different ‘purposes’ for which adoption happens, and it is useful to distinguish them. Raising, training, and caring for a child is one purpose – often called fostering. Acquiring a legal and spiritual heir is another – for example, for many Hindus, sons fulfill both religious and property-related roles, and adoption is one of the potential substitutes for ‘legitimate’ sons in ancient Hindu legal codes (Bharadwaj 2016: 53, 158). In the following two sections I will describe each of these categories, before moving to a broader discussion of how adoption – among the many things it accomplishes – can also reproduce local and global inequalities.

Fostering: feeding and supporting a child

The word ‘foster’ comes from Old English, and its original referents were food, nourishment, sustenance, and nursing.^[8] Anthropologists have long been attentive to food – its sharing, production, withholding – and the kinds of social relations that food facilitates. This awareness of the social significance of food has resulted in excellent analyses linking food to kinship. For example, Mary Weismantel’s essay on fostering in an indigenous community in highland Ecuador includes the wonderful line, uttered by a man about a child he had only recently brought into his household, ‘I am going to be his father...Aren’t I feeding him right now?’ (1995: 690). Weismantel’s interlocutor was saying that feeding creates kinship, over time.^[9]

The concept of ‘fostering’ or ‘fosterage’ has also been amply studied in socio-cultural anthropology, with a focus not solely on food but on the daily practices of caregiving, tending, and nurturing. Anthropologists have documented fostering, or ‘child circulation’, as a widespread phenomenon around the world from West Africa to Oceania to the Americas.^[10] The ubiquity of these fluid and flexible movements of children from one home to another, and the cross-cultural data on process and outcomes, show how effective fostering can be at bringing up children in an extensive family context while responding to structural conditions such as poverty or political upheaval.

For example, Esther Goody has studied fostering at length in West Africa, among the Gonja people of Ghana. In her analysis of fostering and adoption (1984), she aligns the uses to which fostering is put with the complexity of the political and social organization of a community. According to Goody, in a unilineal descent group (a system where relatedness is traced either through fathers or through mothers, but not both^[11]), fostering outside of the kin group is rare, being unnecessary for the child’s training, and undesirable because it would imply the descent group’s loss of a child’s labour; however, in other kinds of societies, a range of spatially dispersed relatives may have rights to a child, so depending on resources in a kin group and on existing labour needs a child might be asked to move. But the child’s movement is not only meant to serve the labour needs of dispersed kin; simultaneously, Goody explains, ‘parents arrange for their children’s training and sponsorship in the way which will place the children in the best possible position as adults with respect to those skills and resources which are required to “succeed”’ (1984: 275). As such, this kind of fostering is thought to provide opportunities to children; it is seen elsewhere in West Africa as well (Bledsoe 1990, Gottlieb 2004).

Yet fostering has other implications too, some of them quite provocative. In an essay on ‘milk-kinship’, Peter Parkes recounts epics and legends from Greek, Celtic, and other pasts to demonstrate what he calls ‘allegiance fostering’ – how, for example, medieval Irish nobles would foster their children serially, to multiple foster parents, in order to ensure the children’s education in a range of skills and arts while simultaneously strengthening adult alliances that broadened the nobles’ own political reach (2004: 599-600).^[12] And alliances between relatives are forged in everyday settings as well, as I learned from Milagros, a teenager who participated in my research on child circulation in the city of Ayacucho, in southern Peru. Milagros told me she had moved into her mother’s sister’s house at the age of nine. I observed that her mother’s sister’s family was financially better off than Milagros’s mother – who lived in a squatter settlement across town – and keeping that relationship strong and flowing would have been important for Milagros’s mother. In that context, child circulation served to ‘solidify relationships that adults rely on for day-to-day survival or backup emergency plans’ (Leinaweaver 2007: 175). It also results in a robust and culturally-appropriate form of support for young people, though it is a form that many of them express some ambivalence about. Milagros told me both that she had gotten accustomed, and that it was 'not the same' as being with her family of origin (2007: 171, 172).

Finding an heir: ensuring disposition of resources according to one’s wishes

Legal adoption is a different story, though of course legal adoption need not preclude the feeding, raising, and nurturing of a child. As Jack Goody shows, adoption laws in many Western nations today derive from principles established in ancient Rome, where ‘the institution was one whereby the great families provided themselves with heirs to their property and worship, successors to office or a political following’ (1969: 60). Property and its felicitous disposition was thus a significant motivator for early Western formulations of adoption (Hann 1998).

In Roman law, such adoptions were complete and irreversible. Adoption law in many nations today includes a provision where a child is formally, completely, and legally detached from a ‘first family’ before being incorporated into another (‘full’ or ‘plenary’ adoption). This model differs from fostering, where a child retains connections both to the ‘first family’ and to other subsequent caregivers (Goody, J. 1969: 59). It also differs from legal adoption practices in a number of other nations, including France (whose civil code permits ‘simple’, or additive adoption, where the adoptive relationship is added to, rather than replaces, existing biological relationships) and Japan, where in ‘“regular adoption” (futsu¯ yo¯shiengumi), adoptees are often children of extended family members or are adults’ (Goldfarb 2016: 49).

The implications of inheritance, permanent affiliation, and rights take on intriguing meanings in a case described by John Borneman. In the late 1990s, Borneman knew a same-sex couple in Germany – fifty-five year old Harald and thirty-five year old Dieter. Harald, knowing his death was near, wanted to adopt Dieter; in the court hearings, Dieter’s mother insisted that the men’s relationship was ‘like a marriage’. But in that period, the two men could not legally marry, and adoption was the only formal route available for Harald to effectively confer his belongings to Dieter, which in turn formalised and officialised their relation. Borneman highlights the principle of custody – in which ‘the right to inherit wealth [is made] effective through a right to care and be cared for’ (2001: 34). Harald eventually adopted Dieter, which, in its startling contrast with child adoptions, beautifully highlights the social and felt significance of formalising and materialising ties of care.

Also, in many ways far removed from ancient Rome, a Norwegian case study demonstrates the continuing importance of formally making a child into an accepted family member, even through some of the more everyday labours of ‘kin work’ or ‘kinning’. In adoption, kinning may be marked because of what Howell calls the ‘open and public nature’ (2006: 64) of the newly forming relationship or what Modell described as the self-consciousness of adoption: ‘for a parent and child to be related by arrangement, and not by nature, compels an alertness to the terms of relationship that is unusual in an American context’ (1994: 3-4). So, in Norway, one of the arenas in which kinning of transnationally adopted children occurs is through attiring them in the traditional Norwegian clothing called bunad (2006: 75). The use of clothing as a symbolic and formal way to affiliate a child from another place to a Norwegian family is the emphasis here, in contrast to the focus on caring, feeding, and raising seen in the previous section’s discussion of fostering.

Political economy of adoption and inequality

As anthropologists study adoption and kinning around the world, whether in fostering and daily acts of care or through formal alliances and the demands of property disposition, political economic inequality often turns out to be an important dimension of how adoption is experienced and understood.

In the contemporary West, adoption is a process that sometimes uncomfortably entangles child welfare services on one end (the removal of children from birth families that are found to be unsuitable) and the desire for ‘social progeny’ (Goody, J. 1969: 57) on the other.^[13] Critical adoption scholars have identified how adoption tends to reproduce a social hierarchy between deserving receiver and inadequate giver of a child (Briggs 2012, Gailey 2010, Solinger 2001). The inequalities between those who adopt and those whose children have been removed are perhaps most evident in cases of transnational adoption. Linda Seligmann observes for U.S. families that ‘the ability to pursue adoptions across borders – racially, economically, or nationally – is the consequence of geopolitical inequalities that are themselves the result of particular histories and policies that the United States has helped create’ (2013: 11).^[14] For example, Guatemala became one of the most numerically significant ‘providers’ of children in international adoption to the U.S. as a consequence of poverty, violence, and corruption traceable to U.S. involvement in Guatemala during the Cold War (Grandin 2004, Briggs 2012).

Given this unequal flow of children from less-developed to more-developed countries (Frank 1966), it’s particularly important to identify the processes through which international adoption can be narrated as wholly positive. Considering explanatory language like ‘God said one day, “…I found you a baby but you have to go to China”’, Seligmann gracefully demonstrates how many parents’ emphasis on metaphysical connections can preclude a full-on examination of geopolitical inequalities that make international adoption possible (2013: 72). Paloma Gay y Blasco analyses the writings of middle-class white Americans on their personal Internet pages, in which the prospective parents ‘portrayed their adoption as an extraordinary journey, a “wondrous adventure,” not only a particularly significant episode in their lives, but one that transformed them into or revealed them to be extraordinary people, different from those who surrounded them, forever marked as the creators of a “special” or even “miraculous” family’ (2012: 330-31). Supporting these narrations is the conceptual inheritance that Karen Dubinsky has described as ‘an adoption system premised on rescue’ (2010:19). Laura Briggs further argues that this ‘rescue’ framing effectively ‘directs attention away from structural explanations for poverty, famine, and other disasters, including international, political, military, and economic causes’ (2003: 180). In this way, international adoption not only benefits from global inequality – it can also work to foreclose critical discussions of such inequality.

This critical global political economy perspective can also be applied to both historic and on-going forms of domestic adoption that equally reproduced social hierarchies and inequalities. A famous and tragic example is the widespread practice during the mid-twentieth century in which Native American and First Nations children were removed from their homes in what was said to be their ‘best interests’, ‘rescuing’ them while forcibly extracting them from their families and communities (Jacobs 2014). And, in the 1970s and 1980s, the legal mechanism of adoption was used to disguise the criminal appropriation of the children of the disappeared and murdered in Argentina’s Dirty War (Villalta 2009). For example, in a well-documented case described by Carla Villalta, a woman and her eight-month-old infant were captured by the police in Buenos Aires; when the child’s grandmother brought the birth certificate to the police station to claim the child, her documents were challenged and she was not permitted to retrieve him. The child’s parents remain missing, while the child was, in a routine fashion, defined as ‘abandoned’ and placed in the care of a distinguished attorney and his wife, who later adopted him (Villalta 2009: 156-58).^[15] And still more recently, the overrepresentation of African-American children in the U.S. child welfare system reflects, as legal scholar Dorothy Roberts has argued, a policy choice to emphasise punishment for poverty over possibilities for family unity (2002). In each of these examples, structural racism shapes which children are declared to be legally abandoned and therefore ‘adoptable’. Of course, not all adoptions recorded by anthropologists involve such stark inequalities – recall the West African fostering that is meant to support children’s development (Goody, E. 1984; Bledsoe 1990) or Harald and Dieter’s same-sex partnership officialised through adoption in Germany (Borneman 2001). But one of the themes in recent anthropological scholarship on adoption has been how adoption, like so many other practices, expresses and confirms existing socio-political relations of inequality more than it innovates new, creative, transnational relations of ‘diffuse, enduring solidarity’ (Schneider 1980 [1968]: 52).

Conclusion

John Terrell and Judith Modell wrote in their 1994 review essay, ‘Anthropology and adoption’, that ‘adoption is about who belongs and how – a subject of immense political as well as disciplinary significance. It is also, and increasingly, about power, privilege, and poverty…’ (160). The question of who belongs and how is another angle on the question posed above about adoption, that is, ‘what needs and expectations do people have of their families?’

This is to say that, if belonging is important, the mechanisms through which that belonging occurs are going to be crucial for both anthropologists and for adopted persons and their families. But this entry has suggested that for anthropologists, adoption is not only about belonging but also about what families do – transfer property, care for children, convey identity, and more. Adoption is therefore an extremely revealing and important lens for understanding human existence, both because of what it can tell us about how families work, and because of how its use and misuse reflect the ‘power, privilege, and poverty’ Terrell and Modell point to. As Vern Carroll concluded nearly fifty years ago, ‘the answers to questions [about adoption] are the answers to the question of the nature of kinship’ (1970: 15).

Let us return, then, to those very questions about the nature of kinship, and what adoption can mean in the North American and European contexts that have shaped much of the anthropological study of adoption. David Schneider has argued that in the United States, ‘kinship is defined as biogenetic’ and ‘[a] son or daughter by definition shares its parents' biogenetic substance’ (1980[1968]: 23, 50). In these contexts, then, those who are adopted may experience a dissonance of belonging that their cultural surroundings urge them toward.

In Janet Carsten’s interviews with domestically-adopted adults who searched for their birthparents, she was told that the search was motivated by the desire ‘“to know where I came from”, “to be complete”, or “to find out who I am”’ (2000: 689).^[16] At the same time, those who had completed their searches made statements that would ‘disturb that primacy [of birth ties]…strongly assert[ing] the values of care and effort that go into the creation of kin ties’ (Carsten 2000: 691). Carsten showed that these narratives of adoptive kinship actually reveal more general British concepts of ‘personhood, time, biography, and perhaps even the process of bereavement’ (694) unrelated, or not exclusively related, to adoption.

And for Sweden, Barbara Yngvesson demonstrates the paradox at the heart of formal, legal adoption in the way it is practised in most contemporary contexts: while such plenary adoptions connect child and parent(s) in a manner that is permanent and exclusive, there are other cultural dimensions in which those ‘erased’ origins are made significant, namely for the development of the child’s ‘identity’ (2010). This is notably significant when – as is the case for many contemporary adoptions – the adoption is transracial. In such cases, adopted persons are frequently racialised through a ‘constant bombardment of questions regarding the national, regional, ethnic and racial origin of the adoptees’ (Hübinette & Tigervall 2009: 344). And white adoptive parents are asked to take seriously their ‘kin work’ of – as Christine Ward Gailey describes for U.S. transracial adoptions - ‘preparing black children for racism’ (2010: 34).

The research of these scholars, like that of several other anthropologists examining adoption in the present day (Cardarello 2012, De Graeve 2013, Frekko, Leinaweaver and Marre 2015, Goldfarb 2016, Kim 2010, Leinaweaver 2013, Lewin 2005, Modell 1994, Seligmann 2013), shows just how powerful ‘adoption’ is as a site for learning about kinship: how families are made, how belonging is experienced, how persons come to be.

References

Allison, A. 1991. Japanese mothers and obentos: the lunch-box as ideological state apparatus. Anthropological Quarterly 64, 195-208.

Bergmann, S. 2011. Fertility tourism: circumventive routes that enable access to reproductive technologies and substances. Signs: Journal of Women in Culture and Society 36, 280-89.

Berman, E. 2014. Holding on: adoption, kinship tensions, and pregnancy in the Marshall Islands. American Anthropologist 116, 578-90.

Bharadwaj, A. 2016. Conceptions: infertility and procreative technologies in India. New York: Berghahn Books.

Bledsoe, C.H. 1990. 'No success without struggle': social mobility and hardship for foster children in Sierra Leone. Man 25, 70-88.

Bodenhorn, B. 2000. 'He used to be my relative': exploring the bases of relatedness among Iñupiat of northern Alaska. In Cultures of relatedness: new approaches to the study of kinship (ed.) J. Carsten, 128-48. Cambridge: University Press.

Bohr, Y. 2010. Transnational infancy: a new context for attachment and the need for better models. Child Development Perspectives 4, 189-96.

Borneman, J. 2001. Caring and being cared for: displacing marriage, kinship, gender, and sexuality. In The ethics of kinship: ethnographic inquiries (ed.) J.D. Faubion, 29-46. Lanham, Md.: Rowman & Littlefield.

Briggs, L. 2003. Mother, child, race, nation: the visual iconography of rescue and the politics of transnational and transracial adoption. Gender & History 15, 179-200.

———2012. Somebody’s children: the politics of transracial and transnational adoption. Durham, N.C.: Duke University Press.

———& D. Marre 2009. Introduction. In International adoption: global inequalities and the circulation of children (eds) D. Marre & L. Briggs. New York: University Press.

Cardarello, A. 2012. O interesse da criança e o interesse das elites: ‘Escândalos de tráfico de crianças’, adoção e paternidade no Brasil. Scripta Nova. Revista Electrónica de Geografía y Ciencias Sociales XVI (available on-line: http://www.ub.es/geocrit/sn/sn-395/sn-395-10.htm). Accessed 18 May 2018.

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Note on contributor

Jessaca Leinaweaver is Professor of Anthropology and Director of the Center for Latin American and Caribbean Studies at Brown University. She is the author of The circulation of children: adoption, kinship, and morality in Andean Peru (2008, Duke University Press), which won the Margaret Mead Award. Her most recent book is Adoptive migration: raising Latinos in Spain (2013, Duke University Press).

Prof. Jessaca Leinaweaver, Department of Anthropology, Brown University, Box 1970, Providence, RI, United States. Jessaca_Leinaweaver@brown.edu

[1] This article draws on material I have published in overview articles on related topics: ‘Demography of adoption’ (2001) in International encyclopedia of the social and behavioral sciences (ed.) J.D. Wright 1^stvol. (Second edition) Oxford: Elsevier; ‘Foster and kinship care: historical and cultural perspectives’ (2009) in The child: an encyclopedic companion (ed.) R.A. Shweder, Chicago: University Press; and ‘Transnational adoption’ (forthcoming) in The Cambridge handbook for the anthropology of kinship (ed.) S. Bamford, Cambridge: University Press.

[2] Anthropology’s earliest beginnings over one hundred years ago were entwined with the study of kinship. The nineteenth-century American anthropologist Lewis Henry Morgan, intrigued by historical linguistic research that showed earlier connections between now-distant groups of people, hypothesised that similarities in kinship systems among even more distant groups of people might allow researchers to push their understandings of early connections in the ‘human family’ even further back. That is, he thought that kinship systems were even more resistant to change than language (Morgan 1870).

[3] ‘Elle est un lien social ou elle n’est rien’, my translation. This, surely, is what Schneider was riffing on when he wrote that ‘it is the sociocultural attribution of meaning to the biological relationship (real or putative) which is the central conception of kinship. Without the biological relationship there is nothing’ (1984: 54).

[4] ‘Même, à elle seule, la naissance ne suffit pas ipso facto à faire de l’enfant un member integrant de la société domestique; il faut que des ceremonies religieuses s’y surajoutent. L’idée de consanguinité est donc tout à fait au second plan…toute parenté est sociale; car elle consiste essentiellement en relations juridiques et morales, sanctionnées par la société', my translation.

[5] See, for example, Maine 1963 [1861].

[6] In both these examples, it is worth noting that the active subject is the adopter – who is the one identifying an heir or taking care of a young person. And in general, though the word ‘adoption’ is often used metaphorically and outside of kinship to indicate claiming something – like technology adoption, pet adoption, adopt-a-park – I’ll limit it here to considering the human relationships altered when one ‘adopts’, or is 'adopted by', another.

[7] As Zelizer points out, nineteenth-century foster children were sometimes like apprentices; they were sentimentally appreciated but at the same time, employed (as seen in L.M. Montgomery’s Anne of Green Gables). Zelizer notes that in 1870, older boys were most wanted because they were useful; by 1930, cute two-year-old girls were most wanted precisely because they were not economically useful, and rather they were emotional and thus ideal for sentimental parenting (1985: 173, 179, 194).

[8] Though I won’t go into all the possible translations, I can add that the Spanish term I would use for an overlapping semantic field – criar – derives from Latin term creāre, which refers to ‘to make grow'. I would define the Spanish word as ‘to raise’, and Spain’s linguistic authority (the Real Academia Española) provides multiple examples of appropriate uses, ranging from breastfeeding to educating to producing. See http://dle.rae.es/?id=BFyuWxK (accessed 7 June 2018).

[9] For a sampling of other cases of the relationship between food and family, see Allison 1991, Carsten 1997, De Matos Viegas 2003, Pink and Perez 2006.

[10] See, for example, Berman 2014, Bledsoe 1990, Bodenhorn 2000, Carroll 1970, Carsten 1991, Fonseca 1986, E.N. Goody 1982, Guemple 1979, Leinaweaver 2008, Stack 1974, Strong 2001.

[11] For further explication, see this encyclopedia’s entry titled Matriliny.

[12] Moving among a range of foster homes is contrary to the premises of the psychological sciences’ notion of attachment theory, or the idea that a stable relationship with a key caregiver is essential in a child’s early years (Bohr 2010). However, the majority of anthropologists see attachment theory as reflective of the assumptions of Western child-rearing ideologies (e.g. LeVine 2004, LeVine 2007) and argue instead that multiple caregivers and consequent affective relationships generally support children’s development (Seymour 2004).

[13] There is a continuum here, of course: not all adopted children have been removed from their families of origin, although it must also be said that the ‘choice’ to place a child for adoption is very often circumscribed by economic and social circumstances. In the absence of such circumstances, this ‘choice’ might well have been different.

[14] The origins of international adoption are usually traced to the Korean war (Briggs & Marre 2009:6, see also Herman 2008, Kim 2010, Oh 2015). Other nations that became known as sources of children for international adoption experienced not so much war as structural violence: poverty in post-Soviet disruptions in the case of Eastern Europe; the heavy hand of state reproduction policy in the case of China; intensely uneven development in the case of African nations.

[15] Interestingly, the documents were in fact false. The child’s father had been disappeared a few months before the birth, and the mother had not registered the child’s birth right away. As Villalta explains, ‘For those who during those years of terrible political repression knew they were persecuted and lived in secret, any contact with a state authority could be signing one’s death warrant’ (‘Para quienes en esos años de feroz represión política se sabían perseguidos y vivían en la clandestinidad, cualquier contacto con una instancia estatal equivalía a ver concretada una condena de muerte’) (Villalta 2009: 157). The ‘laundering’ of disappearances through child adoption also occurred during Francisco Franco’s dictatorship (1939-75) in Spain (Marre 2014).

[16] An intriguing analogy comes from analyses of anonymous sperm or egg donations (Bergmann 2011).