Open Encyclopedia of Anthropology - Stigma

Race and racism

Rebecca Tishler — Thu, 30 Nov 2023 00:30:34 +0000

Photo: Ernest Cole: Segregational signs at a South-African train station, before 1972.

KIFO Institute of Church, Religion and Worldview Research, Princeton University

Initially published 30 Nov 2023

Abstract:

Racism is premised on the idea that humanity could and should be divided into distinct biological groups or ‘races’, and that different races stand in a ranked and hierarchical relation to one another. Racism understands human races to be separate and clear-cut clusters of people, based on biological criteria that are fixed and relevant for their behavior. While humans do vary biologically, their variation does not fall into such clusters that correspond to racial categories. Speaking of human races thus ignores the contemporary science of human variation, whilst intimately mixing the study of human biology with hierarchy, stigma and prejudice.

As a worldview, racism was historically pervasive in the academy and in anthropology, a discipline that emerged in the context of colonialism, colonial discovery, and the exploration of human diversity. While the concept of race was in many respects foundational to the development and practice of anthropology it is now contested. As we will discover in this entry, the concepts and definitions of race, and their applicability, have changed greatly over time. Drawing on ethnographic material from various social and political contexts, and attempts at theorising race and racism, this entry will discuss important ways in which anthropologists have shaped both concepts in the past and in the present. Their work contributes to the important insight that race is not biologically but socially constituted. ‘Race is the child of racism, not the father’ (Coates 2015, 7).

Introduction

There are no biological races in humans. This is the conclusion of scientific bodies such as the American Anthropological Association (AAA) as well as the American Association of Physical Anthropologists (AAPA; formerly the American Association of Biological Anthropologists, or AABA). As the 2019 AABA statement makes clear, ‘no group of people is biologically homogeneous’, and human populations are ‘not biologically discrete, truly isolated or fixed’.^[1] The 1998 AAA Statement identifies ‘race’ as ‘an ideology about human differences’, and states that physical variations in the human species have problematic non-biological meanings culturally and politically ascribed onto them.^[2] These anthropological associations are not alone in rejecting the biological nature of racial groups, with genetic, psychological, and other scientific associations also publishing concordant statements.^[3]

Yet, one need only look at news items about police violence towards African-Americans in the US; ethnic minority mortality rates during the COVID-19 pandemic in the UK; xenophobic violence against African migrants in South Africa; or the on-going hardening of borders of Europe to prevent the resettlement of migrants and refugees from African and Asian countries (de Genova 2018), to understand why race and racism remain such important topics in our time.

Knowledge about race and racism is produced in the interstices between popular and scientific ideas (Reardon 2005). Anthropology is one of the social sciences that has a contradictory disciplinary heritage (Mullings 2005, 669). ‘Anthropology’s early professionalization as a science was associated closely with the elaboration of typologies and techniques for classifying and operationalizing the discrete “races of man”’ (Harrison 1995, 50). Historically, the discipline has been involved in and complicit with white supremacy, racism, and colonialism (Beliso-De Jesús, Pierre and Rana 2023; Asad 1973). We may even regard the concept of race as a ‘master concept’ in anthropology, emerging from the context of colonialism and settler colonialism and continuing right until the emergence of powerful critiques of the concept of race in the twenty-first century. Recent anthropological critiques of race grew out of a long-standing concern relating to the origins and uses of the concept in the era of so-called ‘scientific racism’. Scientific racism tried to prove the existence of distinct human races by seemingly scientific means, building on biological concepts of race that had been in existence since the sixteenth century. It reached its heyday from the late 18th century, and was disproven in the early 20th century.^[4]

The ideas which underpinned scientific racism were anything but scientific. They flowed from the very racism they were evoked to support. Its lingering effects are still with us, and its central tenets of hierarchical biological difference between human groups have made a disturbing return in recent years (Saini 2019). Concern with scientific racism, and against race as a fixed socio-biological category, was spurred by some anthropologists gradually adopting explicitly anti-racist positions, in line with insights from biological and socio-cultural studies: all humans are now seen as belonging to one and the same human race, thus being endowed with the same inherent value, and the same right to life and dignity. This perspective is broadly recognised as socially and biologically accurate by much (but not all) of the academy and a smaller portion of the broader public. It took long and protracted struggles to undo racist understandings of human groups. The term ‘racism’ was coined in the late nineteenth century, but only adopted in the twentieth century (see below). It provided a starting point for what would mature into a critique of the concept of race both in anthropology and beyond.

Race does not reflect biological reality

Humans vary biologically and that variation is important in understanding the human experience. However, that variation is not distributed in clusters that correspond to racial categories based on phenotype (e.g. Black, white, Asian, etc.) or continental regions (Africa, Asia, Europe, etc.) (Lewis et al. 2022). In the context of human variation, it is often assumed that specific physical differences attest to specific racial, biological, or evolved group differences between racial categories of people, but they do not. In spite of over 300 years of trying to classify humans into mostly distinct biological units, human genetic, morphological and physiological variation does not correspond to racial categories such as Black, white, Caucasian or Asian. Instead most evolutionary scientists today think of human group variation in terms of existing populations, i.e. groups of people who either live in the same place or share other connections such as eating similar food or having children together. Human blood groups, body sizes, immune systems and skin colour simply do not map onto racial categories (Fuentes 2022, 74-91). The vast majority of genetic variation does not even occur across human populations but within them, as different parts of the human genome have different ancestral histories. In fact, there is nearly twice as much genetic variation among human populations in Africa as among all populations elsewhere (Fuentes 2022, 74-91).

This has not stopped humans in the past from trying to impose hierarchical social orders based on assumed biological differences. For example, in the era of segregation in the US, the ‘one-drop rule’ meant that a person known to have one ancestor who was Black was, for the purposes of the law, considered to be Black. Under the racist regime of apartheid in South Africa (1948-1990), the authorities introduced laws which imposed a system of racial classification on the South African population in the form of the 1950 Population Registration Act. Under this and other South African apartheid laws, ‘coloureds’ were classified as an intermediate racial category, and deprived of many basic rights as citizens. In the context of the Population Registration Act, South African citizens whose racial classification was unclear to the authorities were subjected to the so-called ‘pencil test’. The pencil test involved running a pencil through a person’s hair to determine that person’s racial classification. If the hair was straight, and the pencil dropped out of the person’s hair, the person would be classified as ‘white’; if the person had curly, coily or kinky hair, the person would be classified as ‘coloured’ or in some cases as ‘native’ (i.e. Black). Long after the demise of apartheid, such apartheid categories of racial difference remain socially and materially salient.

The category of being ‘native’, also holds negative connotations in Europe. An ethnographic study of a small and mixed coastal community in Northern Norway in the late 1940s found that public identity markers of the Sami ethnic group carried with them a significant social stigma. Locals of Sami background avoided such markers by avoiding use of Sami language and attire in public, and making derogatory remarks about nomadic Sami as ‘primitive’, especially when in the presence of non-Sami Norwegians. Being Sami was associatively linked to ‘uncleanliness’, and some locals of Sami background even referred to Samis as forming part of ‘an inferior race’ (Eidheim 1966; Eidheim 1969). Even today, Norwegian Samis remain targets of discrimination. These few historical examples of which there are countless others testify to the persistence of official and popular beliefs about the existence of biological race.

But race has real social and material consequences

Race is not biologically real, but its social and material consequences surely are (Hartigan 2013, 188). Racist systems, processes, and structures create the linkages between non-biological racialised groups and specific social, political, economic, and health-related outcomes. For example, statistics pertaining to the COVID-19 pandemic in the US found that whilst average life expectancies had fallen by two years in the population at large as a result of the pandemic, that figure rose to seven years for Native Americans and Alaskan Americans.^[5] The social and material realities of racism can create specific biological consequences connected to racial categories, such as the reality that Black American women are three times more likely to die during childbirth than white American women.^[6]

Ethnographic studies from Brazil also point to the important effects of racism and discrimination on Black Brazilians. One early 1990s study of a small town in Rio’s coffee-growing interior, shows that racial inequality was upheld as the town’s inhabitants embraced aesthetic features that pointed to European ancestry, denigrated physical traits that point to African ancestry and wilfully forgot the non-white parts of their family histories (Twine 1998). Here racism endured, in part because commonsense definitions of it focused on direct human interactions. They excluded more complex and covert forms of racism, such as institutional racism or racist media imagery. As a result, Black Brazilians were routinely the subject of racist jokes, remained underpaid and were excluded from privileged social, educational and occupational spaces (Twine 1998).

While insisting on biological racial difference is not scientifically defensible, refuting the idea of biological race can also have negative consequences. In large parts of Latin America, the idea of mestizaje, or of people being biologically and culturally mixed, often serves attempts to whiten the population or to facilitate nation building (Hordge-Freeman 2015, 11-13). However, it is also part of more recent efforts to stop focusing on biological differences and to remedy centuries of racism and discrimination as part of democratic nation building (Wade 2017). Yet this emphasis on ‘mixture’ has its limits. It continues to provide a space within which Blackness, Indigeneity, and whiteness can implicitly be hierarchically valued. Insisting on people’s sameness may even blend into opposition to affirmative action policies. In Brazil for example, the insistence that race is not a primarily biological category has led some activists on the political left and right to argue against policies that explicitly recognised racial groups in society so as to give them special rights (Wade 2017, 129). This undermines efforts of those Black and Indigenous activists who are actively fighting to be recognized as racially and culturally distinct. The myth of a Brazilian ‘racial democracy’ thereby undercuts affirmative action policies, with the argument being that if race does not exist in Brazil, racial quotas should not either. It equally obscures the important processes of racialisation, which routinely lead to gendered racism and racialised sexism in the country (Caldwell 2007, 8).

Histories of race, histories of racism

‘The history of race and racism is a major component in the development of modern anthropology’ (Sussman 2014, 9). Anthropologists now generally contend that racism is epistemologically prior to race, or that ‘racism made race’ (Graves, Jr. and Goodman 2021, 5). This can be a bit confusing, because the term ‘racism’ is in fact a much more recent addition to the lexicon than ‘race’.

As a designator for biological ideas about human difference, the term ‘race’ emerged in the period of 1730-1790 in Europe (Bancel, David and Thomas 2019), whereas the first recorded instance of the term ‘racism’ in a Western language appears to be that of the French anarchist Charles Malato in his Philosophie de l’anarchie (1888), and in English that of the US military commander Richard Henry Pratt in Proceedings of the Mohonk conference (1902). Arguably the most central scholarly contribution to popularising the term came in the form of the exiled German Jewish sexologist Magnus Hirschfeld’s posthumously published monograph Rassismus (1938).^[7]It was not until 1942 that the term ‘racism’ appeared in the Merriam-Webster Dictionary for the first time.

A first clear-cut example of racism in Europe that historians tend to point to is the discrimination faced by Muslim and Jewish converts to Catholicism—moriscos and conversos—during the Catholic Reconquista of the Muslim-controlled al-Andalus area of the Iberian Peninsula from the twelfth century onwards (Bethencourt 2013). These converts to Catholicism and their patrilineal descendants were for centuries denied full civil rights with reference to their alleged lack of ‘purity of blood’ ('limpieza de sangre'). We may distinguish between biology as a science which assesses the organic dynamics of bodies, and biology as popular ideas about the body. Biology as a contemporary science did not exist in the Iberian Peninsula at the time of the Catholic Reconquista. And yet, the idea of an essential link between blood and descent appears to be already present, although there was no underlying concept of biological race involved: raza or ‘race’ in Spanish referred at the time to ‘noble birth’, rather than biological race.

The biological conceptions of race, in which skin colour and other phenotypical markers of human difference are made salient and prominent, are a product of the European Enlightenment. Enlightenment science enabled race to ‘become biological’ (Graves, Jr. and Goodman 2021, 21). For example, botanist Carl Linnaeus’ classified humans into ‘five varieties’ in the tenth edition of his Systema naturae from 1758 (Marks 2017; Blunt 2002). Immanuel Kant’s philosophical anthropology linked skin colour to human character and intellect, describing humans of paler skin as superior to humans of darker skin (Mills 2017). ‘Skin colour is the primary criterion by which people have been classified into groups in the Western scientific tradition’ (Jablonski 2021, 437), but skin colour was only one of the criteria: physical markers such as hair texture, head size, bodily shape, eye colour and shape, and the size of one’s lips, nose, and sexual organs have at various times also been seen as marking race. What is rarely appreciated is ‘the extent to which current thought and research remain influenced by colour-based race concepts’ (Jablonski 2021, 437).

European colonialism was also integral to the development of racism, as European conquest sought to legitimate itself by recourse to arguments about human difference in an age of European discovery of other parts of the world. Given that anthropology emerged as a science intimately linked to European colonialism (Asad 1975, Trouillot 2003; Gupta and Stoolman 2022), it is hardly surprising that early anthropology would play a central role in the development and elaboration of ideas about human difference and otherness intrinsic to European colonialism that created ‘biological’ (but actually social) conceptions of race. These ‘biological’ understandings of human difference have adapted to highly variegated historical, social, and political contexts, and have adopted different forms. It is in reference to this that cultural theorist Stuart Hall referred to race as a ‘floating’ or ‘sliding signifier’ (2017) or a concept with no fixed categories or meanings. Hall’s is not an argument for the timelessness and universalism of all forms of racism but rather for the malleability of race concepts underpinning racism. According to him, race works like a language. The meaning of racial categories is not primarily defined by what they refer to. Instead, their meaning depends on other meaning making concepts. People’s different histories, experiences and modes of living determine which racial categories they may find convincing. For Hall, the study of how racial categories are made and remade is thus not primarily about human and scientific progress, but it is driven by socio-cultural ruptures and continuities.

For example, racial regimes of colonialism and settler colonialism varied according to time, context, and targets: the racism faced by African-Americans and Indigenous American Indians in the US differed from others in form and character. The transatlantic slave trade resulted in a racialisation whereby African-Americans were seen as property and sources of labour, while settler colonialism resulted in Indigenous Americans being viewed as obstacles to extraction and control of resources (Mamdani 2020). Simply subsuming them under the same umbrella of racism risks under-emphasizing the specific forms of violence that people in different times and places have had to endure.

Scientific racism

By the nineteenth century the idea that there were innate human differences attributable to assumed races was considered as established scientific knowledge, as well as simple common sense in large parts of the world (Saini 2019). Linnaeus, who laid the foundations for scientific racism, included humans among the animal species and divided them into different varieties based on skin colour as well as real and assumed behaviour (Kenyon-Hyatt 2021). Linnaeus’ contemporary, the eighteenth century biologist Comte de Buffon believed that an original white ‘Caucasian’ race had degraded into other races due to environmental factors such as difficult climates and poor diets. Though he admitted that humans were one single species and any classification of humans was bound to be arbitrary, he still held the view that there was a biological racial hierarchy. The biologist Johan Friedrich Blumenbach (1752-1840) divided humans into ultimately five hierarchically structured races, based on people’s anatomy as well as their linguistic and psychological features (Bethencourt 2013; Gates, Jr. and Curran 2022). Race thinking in scientific racism cut across the divisions between ‘monogenism’, which posited a single origin of humanity, and ‘polygenism’, which held that human races had different origins. Historians have documented how the tenets of Western scientific racism were exported to other parts of the world and applied to local circumstances by local elites (see Skidmore 1993 for Brazil, Zia-Ebrahimi 2016 for Persia/Iran and Weaver 2022 for India).

Scientific racism also provided license and legitimation for eugenics (el-Haj 2007), the belief that human ‘stock’ could and should be ‘perfected’ by means of restricting the right to reproduce for certain categories of humans. Such reproductive restrictions were usually imposed on racialised others, the poor and people with mental or physical disabilities. Eugenics counted on widespread support from white academic, social, political, and media elites in both Europe and the US (Rutherford 2022). The eugenicist idea that humans could and should be ‘perfected’ was intrinsically linked to a racial hierarchy in which the supposed ‘white race’ was placed on top. ‘Miscegenation’ between supposedly different races of humans was declared either undesirable or outlawed. Moreover, the right to biological reproduction of people or groups of people of all colours was limited. In places like South Africa under apartheid, the US South in the era of segregation, and in Nazi Germany, sexual relations, co-habitation, and marriage between individuals deemed to belong to different ‘races’ was prohibited by state law. The obsession with ‘interracial’ sex, and the casting of hypersexualised Black and brown men, in particular, as sexual threats against white women, has been and remains an ever-recurrent facet of racist thought from slavery and colonialism to the present (Stoler 2010).

Arguments for eugenics often came wrapped in arguments about the supposed ‘superiority’ of the ‘white’ and ‘Nordic race’, and physical anthropologists provided data in the form of cranial and other physical measurements meant to lend credence to these ideas (Kyllingstad 2012). Given these ideas about alleged racial superiority of the ‘white’ and ‘Nordic race’, it should not be any surprise that the eugenicists’ calls for restricting the right to reproduce often also entailed calls to restrict ‘non-white immigration’ and interracial sexual relations in the name of ‘preserving racial purity’ both in the US and in Europe. There was in fact an extensive trans- and inter-continental traffic of racist ideas about the ‘white’ race and/or ‘Nordic’ and/or ‘Aryan’ racial superiority with the US white supremacist and eugenicist movement (Whitman 2017).

Though European colonialists legitimated any number of atrocities and violence inflicted on colonised peoples by recourse to ideas central to scientific racism—such as the transatlantic slave trade, genocide, and the forced removal of children from their families and communities—broader European and Euro-American popular recognition of how lethal and dehumanising these ideas actually were was catalysed by Nazi extermination policies. These views culminated in the Holocaust against - among others - Jews, Roma, queer, and disabled peoples from 1942 to 1945. The central role of some German anthropologists in this horror is well documented (Schafft 2003).

The Boasian turn

By the turn of the twentieth century, the ideas of scientific racism were dominant among liberal Western elites. They were also dominant and widely taken for granted among anthropologists—and not least in physical anthropology. Work by the Haitian anthropologist Anténor Firmin (1885) directly countered and challenged 19th century racial typologies and their associated racism. He insisted on focusing on people’s moral and intellectual dimensions, rather than their physical attributes, leading him to argue for the essential equality of humans. His work did not make a global impact during his time or over coming decades, in part due to the racist biases of the academy. However, it did foreshadow later arguments about the social construction of race (Fleuhr-Lobban 2000). Anthropologist Franz Boas (1858-1942) and his successors received the most attention in challenging the ideas about biological race so central to scientific racism. Influenced by and in dialogue with sociologist W.E.B. Du Bois (1868-1963), Boas and his students took on key elements in the push against racial essentialism and the racism it supported (but not without issues: see Baker 2021 and below).

Physical anthropology in Boas’ time was wedded to the idea that one could derive conclusions about the mental and intellectual capacities of purportedly different races through determining physical attributes such as head size and shape. It was Boas’ 1912 monograph Changes in bodily form of descendants of immigrants that demonstrated that, contrary to dominant claims at the time, the lived human environment was a significant factor in the development of physical attributes among humans (Baker 2004; Gravlee, Bernard and Leonard 2003). The book showed that the physical aspects of European immigrants to the United States changed more drastically than expected, and more the longer their parents had been to the United States. Boas and his successors conducted this study in the context of struggles against eugenics and white supremacist movements in Europe and the US in the 1920s and 1930s, and not the least German Nazism (King 2019). Central in the new anthropological conceptualisation of what was and should be the focus in the study of human difference and variety was the concept of culture. Cultural differences were increasingly seen as being more important than biological differences. More specifically, the ‘Boasian turn’ in anthropology disrupted the ideology that biology underlay culture. Previously presumed biological traits and cultural phenomena were no longer causally linked (Mukhopadhyay and Moses 1997, 525), and one could no longer proclaim that ‘group X does this because of biological trait Y’.

Whereas Boas had hedged his bets, and retained the concept of race itself, his radical student Ashley Montagu (1905-1999) launched a full attack on the concept in anthropology (for a related, if somewhat more demure, anti-racism in mainstream physical anthropology, see Washburn 1963). For Montagu, race was a myth, and ought to be replaced by the concept of ‘ethnic group’. The ethnic group was not intended to merely ‘substitute’ for race; it entailed adopting an entirely new viewpoint (Montagu 1962, 926). Montagu, who during World War II published the seminal monograph Man’s most dangerous myth: The fallacy of race (1942), would later become the main author of UNESCO’s 1950 Statement on Race, in which race was declared to be a non-scientific concept (Brattain 2012). The Statement foregrounded humanity’s common ancestry and genetic similarities across populations to argue that racism was nothing but an inherently aggressive ideology and a misguided feeling. Montagu believed that the concept of race was so intertwined with racism that one could not do away with the latter without first doing away with the former (Yudell 2014).

Though they have in time become part of the anthropological common sense, it often seems forgotten, even within anthropology itself, how radical Montagu’s ideas about race and racism were at the time. The years that followed the 1950 UNESCO Statement on Race also revealed that Montagu’s radical anti-racist stance as a drafter of the statement had uneven support among the cross-disciplinary group of scientists involved in UNESCO: it would be followed by more anodyne UNESCO statements on race in 1951, 1967 and 1978 (Hazard, Jr. 2012). Another anthropologist involved in the 1950 UNESCO Statement, and critical of the concept of race, was Claude Lévi-Strauss (Rouse 2019). But in anthropology, Montagu, building on Firmin, Boas, Washburn, and the work of many others, won out, and the lingering effects of his contribution can also be found in the various institutional statements on race and racism today.

The critique of Boasian racial liberalism

Changes brought by the Boasian turn were incomplete. In the eyes of its detractors, the dominant Boasian ‘racial liberalism’ in anthropology in the post-World War II era turned out to be quite compatible with the continued exclusion and marginalisation of Black, Indigenous, and other racialised scholars (Baker 2021). The idea of racial liberalism foregrounds that liberalism has been racialised, as liberal theory long restricted full personhood to white men, and its insistence on liberal values trivialises white supremacy (Rana 2020). Liberalism has historically tended to describe white supremacist and racist imaginaries about state and nation as pertaining to the political fringes (Shoshan 2015). This is an analytical and conceptual move which often exceptionalises racism and reinforces notions of ‘white innocence’ (Wekker 2015).

Radical critiques of Boasian racial liberalism starting in the 1960s, inspired by the nascent field of Black studies (Anderson 2019; de Jesús, Pierre and Rana 2023). They took aim at what they declared to be the fiction that anthropology itself and the societies it studies had become ‘post-racial’ by declaring race to be a social construct and adopting a ‘no race’ position. Boasian racial liberalism would also at times appear to efface the central role that transatlantic slavery played in the formulation of anti-Black racism (Harrison 1995, 52), and to have reduced racism to a matter of individual attitudes rather than social structures and systemic practice. Critiques of Boasian racial liberalism have also taken aim at the notion that replacing the concept of race with the concept of ethnicity—as popularised by the works of Montagu (1942) and anthropologist Fredrik W. Barth (1969)—would do away with racism. For turning ethnicity into the ‘master principle of classification’, in the words of its critics, ‘euphemized, if not denied race’ by not specifying the conditions under which racism emerges and persists (Harrison 1995, 48).

The radical critique of Boasian racial liberalism also took on board the empirically registrable fact that far-right and racist movements had shifted from a discourse highlighting immigrants and minorities’ physical and phenotypical features to a discourse about the culture and religion of ‘racial others’. They had done so in a very elaborate and conscious attempt at evading the very accusations of racism that often blocked their popular appeal. Diagnosed as ‘cultural racism’ by Frantz Fanon (1967), this was not so much a ‘new racism’ (Balibar 1991), as a return to the very origins of European racism by making culture and religion the central markers of exclusion of ‘others’ (Stolcke 1995). Peter Wade makes the important point that ‘race has always been seen as a natural-cultural assemblage in which “nature” and “culture” are always shaping each other and the differences between them are not always clear’ (Wade 2015, 53).

What this return to cultural racism translated into in practice was the racist and discriminatory treatment of Muslim and/or Black populations throughout Western societies in particular, a form of racism often described as ‘Islamophobia’ (Bangstad 2022). Islamophobia is by no means limited to the West. The new forms of racism represented a ‘racism without races’ or a supposedly ‘colour-blind racism’ (Bonilla-Silva 2003; Omi and Winant 1986). By the 1990s, it had arguably become a dominant form of racism in Europe and the US. Regardless of the elaboration and differentiation of the concept of culture in anthropology, out in the real world, ‘culture’ would, over the course of the 1990s, assume some of the very same essentialised properties as the concept of race once had. The new ‘culture talk’ was exemplified in the political construction of the category of ‘Muslim’ which followed in the wake of al-Qaida’s terrorist attack on the US on September 11, 2001 (Mamdani 2002; Abu-Lughod 2002).

Noteworthy in this context of racism against Muslims was also the ubiquity of racist stereotyping of Muslim males as existential sexual threats against women and women’s rights worldwide (Abu-Lughod 2015). That racist trope travelled fast and far and has been present in, for example, the anti-Muslim hate speech and rhetoric of Buddhist nationalists in Myanmar as well as among Hindutva nationalists in India in recent years. Darren Byler has also noted that the production of Uyghur Muslim men, in particular, as ‘subhuman under the sign of terror’ is characteristic of both state authorities and settler colonial discourse in Xinjang, China (2022, 9). Arjun Appadurai identified a ‘fear of small numbers’ (2006) as a central element of global racisms: with the rise, mainstreaming, and circulation of far-right and racist ideas about white ‘replacement’ or ‘extinction’ in various societies such as Europe, the US, India, and South Africa. Those fears have long since become global.

New frontiers in the anthropological study of race and racisms

Anthropology has been taken to task for largely ignoring race and racism as central to its history, practice, and development (Pierre 2013; Jobson 2020). That anthropological scholarship about race and racism has overwhelmingly focused on Western contexts should not blind us to the fact that while racism is not a human universal (i.e., found in all human cultures), it is certainly a global phenomenon (i.e., found in contemporary human societies in all parts of the world) (Hage 1998; Twine 1998; Ghassem-Fachandi 2012; Loftsdóttir and Jensen 2014; Ghassem-Fachandi 2012; Pierre 2012). Anthropological studies have also demonstrated that many societies that are profoundly multiracial and multicultural—such as in the Caribbean, Latin America, and Africa (Pierre 2012)—have developed and sustained elaborate racial hierarchies premised on the retention of privileges for the ‘least Black parts’ of the population (Wade 2017). Anthropologists have equally documented how racism can even pervade institutions in which there is a formal commitment to equal treatment or the eradication of racism (Rouse 2009; Shange 2019). Inspired by critical whiteness studies, they have also reversed the tendency to study race through the study of people of colour, and explored the intersections between class, gender, and race among white people (Hartigan 2005). In the ‘decolonizing turn’ in anthropology in recent years, critical calls to dismantle past and present structures of white privilege and white supremacy within anthropology (de Jesús, Pierre and Rana 2023) as well as to de-centre white epistemologies have been central (Allen and Jobson 2016; Gupta and Stoolman 2022).

Anthropological theories and analyses do not evolve in isolation from developments in society and politics at large. The Black Lives Matter (BLM) movement has engendered a shift from definitions and analyses of racism premised on seeing it as the articulation of individual attitudes, to definitions and analyses with concepts such as ‘systemic’ and/or ‘structural’ racism. That shift now provides directions and new avenues for future research (see, among others, Gilmore 2022), and is discernible in Laurence Ralph’s study of the use of torture alongside everyday incidents of police violence against Black Americans in Chicago (2020) as well as in Ruha Benjamin’s studies of how digital technology structures (coders, developers, users) reinforce racial discrimination and biases that create and inform coded inequity or what Benjamin calls the “New Jim Code” (2019). Inspired by work on science and technology, anthropologists have also taken an interest in how the rise and popularity of modern and privatised DNA testing and the new science of genomics may re-inscribe racial frames and engender racism (M’charek 2005; el-Haj 2007; Fullwiley 2011; Nelson 2016; Abel and Schroeder 2020; Abel 2022). Yet, they have also discussed how the use of genomic analyses can be used to push against racist and colonial frames, for example by solidifying empowering forms of otherness (Benn-Torres and Torres-Colon 2021).

For what it will be worth, in an uncertain human future under conditions of man-made and intertwined ‘polycrises’ including global climate change and environmental destruction, increased migration flows coupled with the bordering of the richer parts of the world, global pandemics, and ravaging wars, anthropology seems in recent years to have taken more substantive steps in the direction of anti-racism (Mullings 2005). As anthropology helps us recognise and address racism, we may in turn be in a better position to deal with looming threats to the idea of a shared humanity.

References

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Note on contributors

Sindre Bangstad is a Research Professor at KIFO, Oslo, Norway. He was a Visiting Professor in Anthropology at Princeton University 2022-23.

Sindre Bangstad, KIFO Institute of Church, Religion and Worldview Research, Øvre Slottsgate 6B, 0192 Oslo, Norway. sindre.bangstad@kifo.no

Agustín Fuentes is a Professor of Anthropology at Princeton University.

Agustín Fuentes, Department of Anthropology, Princeton University, 116 Aaron Burr Hall, Princeton, NJ 08544, USA. afuentes2@princeton.edu

[1] ”AABA statement on race & racism.” 2019. American Association of Biological Anthropologists, March 27. https://bioanth.org/about/position-statements/aapa-statement-race-and-racism-2019/

[2] “AAA statement on race.” 1998. American Anthropological Association, May 17. https://americananthro.org/about/policies/statement-on-race/

[3] See, for example, ” American Society of Human Genetics statement regarding concepts of ’good genes’ and human genetics.” 2020. American Society of Human Genetics, September 24. https://www.ashg.org/publications-news/ashg-news/statement-regarding-good-genes-human-genetics/#:~:text=Genetics%20demonstrates%20that%20humans%20cannot,ancestry%20have%20no%20scientific%20evidence

[4] From roughly 1840-1945; see “Scientific racism.” Confronting anti-Black racism resource, Harvard Library. https://library.harvard.edu/confronting-anti-black-racism/scientific-racism

[5] Rabin, Roni Caryn. 2022. “U.S. life expectancy falls again in ‘historic’ setback.” The New York Times, August 31. https://www.nytimes.com/2022/08/31/health/life-expectancy-covid-pandemic.html

[6] Population Reference Bureau. 2021. Black women over three times more likely to die in pregnancy, postpartum than white women, new research finds. Washington, D.C.: PRB. https://www.prb.org/resources/black-women-over-three-times-more-likely-to-die-in-pregnancy-postpartum-than-white-women-new-research-finds/

[7] The authors would like to thank Dr. Tobias Hübinette, Karlstad University, Sweden for information on this.

Editor:

Rachel Cantave

Diabetes

Rebecca Tishler — Mon, 01 May 2023 08:04:50 +0000

Person getting tested for high blood pressure and diabetes at Prince Mshiyeni Memorial Hospital in South Africa in 2012. Photo: GovernmentZA

Shir Lerman Ginzburg

Massachusetts College of Pharmacy and Health Sciences

Initially published 1 May 2023

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

Abstract:

Type 2 diabetes mellitus is a global disease that involves the body’s impaired ability to regulate blood sugar (glucose) due to malfunctioning insulin, a hormone produced in the pancreas which is responsible for transporting the glucose into the cells. Anthropologists have provided meaningful insights into the causes (aetiologies) and prevalence of diabetes, particularly focusing on the social, political, and economic factors that underlie the ways in which diabetes continues to afflict millions of people worldwide. As a chronic illness with no cure, diabetes poses unique challenges for people struggling to manage medications, food changes, and multiple medical appointments, particularly for those who are already suffering from other structural barriers to health. Furthermore, anthropologists have highlighted the importance of identifying the overlaps between diabetes and other chronic diseases in order to provide better treatment options and to understand the underlying structural conditions that contribute to diabetes, such as poverty and unemployment. The ‘syndemics’ framework is a useful tool for considering the multileveled approaches to diabetes aetiologies and preventions.

Introduction

Diabetes, a cluster of diseases that impact the body’s ability to process insulin, is well-established as a chronic illness, having been described as such as early as 1500 BCE, when an Egyptian manuscript described a ‘too great emptying of the urine’, although Apollonius of Memphis was the first to call the disease ‘diabetes’ in 250 BCE (Trikkalinou et al. 2017). Several centuries later, an unnamed seventeenth-century English surgeon called diabetes ‘the pissing evile’ due to the frequent urination common to people with the disease (Karamanou et al. 2016; Kelleher 1988). Unfortunately, most diabetes itself is rather less colourful, albeit equally dangerous if left unchecked. Diabetes is a chronic disease characterised by high glucose due to the body’s inability to produce and/or process insulin, a hormone that helps the body use energy (Carruth et al. 2019; Mendenhall et al. 2010; Schoenberg et al. 2005). People are clinically diagnosed with diabetes if their fasting glucose blood test levels are over 126 mg/L or have a three-month average hemoglobin (HbA1c) level of at least 6.0%.^[1] The number of adults (ages 20-79) worldwide living with diabetes reached 537 million people in 2021 and researchers estimate that by 2045, 783 million individuals worldwide will have diabetes.^[2]

Symptoms for diabetes include increased urination and thirst, unintentional weight loss, blurred vision, exhaustion, tingling hands and feet, and dry skin. Diabetes is sometimes called ‘the silent killer’ because these symptoms are so common that they are oftentimes attributed to other things, leading to worsening disease outcomes and decreased quality of life before a diagnosis is even made. Untreated diabetes can lead to coronary artery disease, renal failure, and blindness, and is correlated with high blood pressure (hypertension), high cholesterol (dyslipidaemia), arthritis, and depression (Mendenhall 2019; Trikkalinou et al. 2017).

Healthcare providers generally diagnose individuals as having one of three broad types of diabetes: type 1, type 2, and gestational. All three types share the same general symptoms and basic cause (a cellular inability to absorb glucose for fuel due to a failure to recognise insulin) but differ in the physiological details and cultural paradigms of aetiology and treatment. This entry will begin by outlining the three general types of diabetes and then discuss how anthropologists shed light on interacting cultural models of diabetes diagnosis, treatment, and long-term care.

Types of diabetes

Type 1 diabetes mellitus is an autoimmune reaction wherein the body’s defence system attacks the cells that create insulin, causing a severe insulin shortage in the body and allowing for a dangerous accumulation of glucose in the blood. Unchecked type 1 diabetes can contribute to nerve damage (neuropathy), kidney damage (nephropathy), eye damage (diabetic retinopathy), foot damage, heart disease, and skin infections.^[3] It is linked to both genetic and environmental factors, although the exact causes are not yet known and there is no known cure. Type 1 typically develops in children and young adults and requires individuals to inject insulin daily to remain healthy.^[4] Approximately 10% of people worldwide have type 1 diabetes as of July 2020.^[5]

Gestational diabetes develops in pregnant women who did not already have diabetes prior to pregnancy. This type of diabetes physiologically resembles the other types in that the body struggles to recognise insulin, which leads to higher levels of glucose in the bloodstream. While glucose levels generally return to normal after giving birth, women who have gestational diabetes are at higher risk for developing type 2 diabetes later in life.^[6]The precise origins of gestational diabetes are unknown, yet researchers suggest that the mother’s pre-pregnancy weight, physical inactivity during pregnancy, being of certain races or ethnicities (such as Black, Hispanic, and American Indian), having a family history of diabetes, and having polycystic ovarian syndrome are all contributing factors.^[7] Approximately 14% of women worldwide had gestational diabetes during pregnancy in 2021 (Wang et al. 2022).

Type 2 diabetes has become a pandemic, catching the attention of researchers and healthcare providers alike due to the urgent nature of its scope. Like the other diabetes types, type 2 involves high blood glucose levels, but unlike the other types, in type 2 the pancreas produces sufficient insulin. Instead, cells resist insulin’s efforts to transport glucose into the cells (insulin resistance), resulting in rising blood glucose levels and causing the pancreas to create more insulin. However, the cells continue to resist the insulin’s efforts, resulting in even higher glucose levels which can cause major health problems, such as heart disease, liver and kidney failure, and vision loss.^[8] Type 2 diabetes accounts for 95% of diabetes cases worldwide, with physical inactivity, being overweight or obese, and socioeconomic factors like poverty being major contributing factors.^[9]

This entry focuses on type 2 diabetes due to its overwhelming global prevalence and due to the biomedical focus on solely individual behaviours. Diabetes is commonly known among biomedical healthcare providers as the ‘lifestyle type’ due to its association with overconsumption and sedentary behaviours, which are generally blamed on individual patients (Carruth et al. 2019; Yates-Doerr 2011). However, this framing ignores the social, economic, and political contexts that impact the diabetes experiences of many patients. While anthropologists acknowledge the different clinical diabetes types, they also recognise the limitations of clinical diagnosis in getting to the deeper causes of diabetes.

Structural roots and barriers to care

Diabetes is what medical anthropologists term a ‘disease of modernisation’ due to its association with structural factors, such as poverty, unemployment, and colonisation (Baglar 2013; Ely et al. 2011; Mendenhall et al. 2010; Singer 2020; Wiedman 2012). At the same time, diabetes management has become exponentially more expensive due to the rise in transportation, housing, healthcare, and food costs, which negatively impact many peoples’ ability to consistently afford the many changes that are recommended by healthcare providers, particularly when many individuals are already struggling to pay for rent and other necessary living expenses (Mendenhall 2015; Thorsen et al. 2020; Vest et al. 2013; Weaver 2018). High costs of diagnosis and treatment contribute to diabetes being diagnosed later in its development and enable it to have more destructive effects.

Quality of life for people with diabetes depends on their financial resources, geographic proximity to healthcare services and social support networks, physical pain or discomfort levels, and dietary patterns. The uncertain, long-term benefits of living with minimal complications often conflict with the day-to-day difficulties of diabetes maintenance, which negatively impacts stress levels (Black et al. 2017; Speight et al. 2019). Anthropologists tend to note that not all populations experience the same quality of life in living with diabetes, as some communities face additional social, economic, and racial disparities on top of pre-existing health disparities that make a life of diabetes much harder (e.g. Rock 2003a; Wiedman 2021 and Weaver 2018). For example, Janet Page-Reeves and colleagues (2013) note that individual decisions and human agency is heavily constrained by social environments (structure) when it comes to diagnosing and treating diabetes. The social environment that Page-Reeves and others study is that of Hispanics in the state of New Mexico. They incorporate specific conceptual models of illness such as emotional regulation of symptom experience and biomedical diabetes aetiology, and core cultural values such as religiosity and prioritising the family to understand and deal with the disease. Page-Reeves and colleagues observe that in situations with limited economic resources, deciding where to spend money can be a difficult choice, particularly if family members with diabetes need to buy healthier (and more expensive) foods on top of multiple visits to the doctor.

The structural nature of diabetes reflects community-level inequalities in access to different foods, healthcare, education, and other necessary resources. While diabetes is currently present in all populations worldwide, it disproportionately affects low-income populations due to multiple factors that intersect with poverty, such as unemployment, food insecurity, unaffordable healthcare, and non-existent social support (Ferzacca 2012; Lerman Ginzburg 2020; Mendenhall et al. 2017; Rock 2003a; Solomon 2016; Weaver 2018).

A significant ethnography on the structural experiences of vulnerable populations with diabetes is Carolyn Smith-Morris’ 2006 ethnography of diabetes among the Akimel O’odham (colloquially known by outsiders as the Pima), a Native American tribe based by the Gila River in the state of Arizona and the northern Mexican desert. Smith-Morris found that the sweltering Arizona heat, unemployment, and poverty were all factors in the Akimel O’odham developing diabetes. Here, starkly high levels of unemployment and high reliance on government assistance coupled with limited economic resources, reduced physical exercise due to the heat, limited affordable healthy food options on the Pima reservation, and use of food as a comfort against daily struggles, were all contributing factors to developing diabetes. Although the Akimel O’odham have lived near the Gila River for centuries and are familiar with the high temperatures, their responses to it have changed in the past hundred years. As the Gila River has dried up, the Akimel O’odham lost their traditional farms and increasingly relied on government-subsidised foodstuffs (Smith-Morris 2006). Notably, the drying up of the Gila River was not a natural phenomenon, but resulted from the Arizona government’s extensive irrigation efforts as well as damming by non-Native farmers. However, policies of the US Department of Agriculture (USDA), which extended into the 1980s, forbade the Akimel O’odham from receiving help from agricultural loans. Combined with the loss of traditional food pathways, these policies forced the Akimel O’odham to obtain sedentary jobs and rely on high-calorie, poor-nutrition governmental food handouts (Booth et al. 2017; Smith-Morris 2006). Indeed, diabetes is so ubiquitous in the Akimel O’odham that participants in Smith-Morris’ research naturalised it more and more, observing, ‘it’s just how Pimas are’ (2006: 33).

Smith-Morris’s work with the Akimel O’odham highlights how political and economic factors contributed to diabetes aetiology in a population already facing racism and other abuses from the very government that was supposed to care for them. Recent work in Nepal supports these findings. Here, governmental inaction in the face of rigid social hierarchies and discrimination against the Dalits–members of the lowest social caste–creates structural situations of high diabetes risk (Thapa 2014). While caste-based discrimination is officially illegal in Nepal, social hierarchies forbid Dalits from participating in many social, religious, educational, and employment opportunities, forcing them into poverty, food insecurity, and occupational and housing uncertainty—all of which elevate diabetes risk. Given that existing social hierarchies are deeply entrenched, the Nepalese government has found it difficult to enforce anti-discrimination laws; in doing so, the Nepalese government failed to take care of its most vulnerable members and reduce Dalit diabetes risk. In this example, it is government negligence, rather than active mismanagement, that increases diabetes risk.

Additionally, colonisation is a structural factor that boosts diabetes risk, particularly as its effects continue for generations after the dissolution of the original colonising state. Indigenous communities that have experienced colonisation face extremely high diabetes rates due to a loss of traditional lands and food sources, cycles of food insecurity, and mental distress from oppressive regimes. In Canada, the diabetes prevalence rate is four times higher among Indigenous communities than in the general population due to decades of the Canadian government enforcing starvation, stress, food insecurity, and the environmental degradation of traditional food sources such as fishing (Temblay et al. 2021). Similarly, high diabetes rates in the Marshall Islands have been linked to the World War II-era devastation of breadfruit trees, which were a traditional food source for Indigenous communities (Duke 2017). The US began distributing canned meat and white rice when it colonised the Marshall Islands after the war. This abrupt change in food acquisition and preparation negatively impacted the Marshallese’s relationship with their environments and their bodies by increasing their reliance on imported canned foods, which are high in additives, rather than on fresh and local resources.

The geographic diversity of these case studies emphasises an urgent need for studying the complex historical, structural, and traumatic roots of diabetes in greater depth. Prolonged exposure to colonialism is associated with a profound loss of traditional food acquisition, preparation and consumption, and subsequently high levels of food insecurity and malnutrition even when a colonising regime no longer exists. The loss of traditional livelihoods and diminished community self-determination undermine socioeconomic development among oppressed communities. Particularly, it leaves rural communities in debilitating working conditions with only limited access to comprehensive primary care or physical activity options, like walking trails, that are weather-safe for year-round use (Rice et al. 2016; Tremblay et al. 2021).

The colonial roots of diabetes serve as a stark reminder that health is due as much to structural environments as it is to biology. As these and other ethnographies demonstrate, structural environments contribute to diabetes being a social disease as participants shared stories about their etiological foundations of diabetes and the ways in which adjusting to a new life required new perspectives.

Diabetes and biopower

Although, as the ethnographies above elucidate, anthropologists have studied diabetes susceptibility among different populations, anthropological literature has also cautioned against relying on rigid, overly simplistic ethnic categories to understand diabetes because they miss the nuanced biological human variations between and among ethnic groups that contribute to diabetes risk (Montoya 2007). Labelling individuals or entire populations as ‘at risk’ for diabetes based on easy single-gene categories risks ‘naïve genetic determinism’ that glosses over the need for deeper analysis of the social and environmental histories of different populations that shape their susceptibility to diabetes (Montoya 2007). Anthropologists have contributed valuable insight into the social, political, and environmental pressures that individuals and populations face, particularly by incorporating biopower—the regulation of human life at the population and individual body levels—and the politics of health, body image, illness metaphors, and explanatory models into the frameworks of diabetes aetiologies and lived experiences (Ferzacca 2012).

For example, research on the clinical encounters of diabetes highlights the difference between clinicians’ perspectives on diabetes and the perspectives of patients with diabetes (Guell 2011; Hernandez 1995; Hunt et al. 1998). Cheri Hernandez (1995), in an ethnographic study on the clinical parameters of diabetes management, observed that while healthcare providers emphasise maintaining acceptable glucose levels and adhering to medication and weight loss regimens, patients prioritise learning how to live with diabetes. Patients with diabetes often found biomedical explanations for diabetes to be insufficient and attributed their diabetes to personally-relevant triggering events and behaviours. Those who believed that their own behaviours were causes of diabetes tended to be more involved in their treatment; the act of being involved in treatment was associated with long-term behaviour change (Hunt et al. 1998).

While Hernandez and Linda Hunt et al. focused on the individual’s biomedical encounters for diabetes treatment, others have expanded this approach to the collective diabetes experience. Cornelia Guell (2011) draws attention to the conflicting hierarchies of diabetes knowledge in Germany that arose among Turkish migrants in Berlin. Tensions arose between Turkish healthcare providers and layperson self-help groups over conflicting values and knowledge hierarchies about diabetes. Along with fierce competition for limited funding for community diabetes clinics and health education classes, these differences in diabetes knowledge not only pitted the community and healthcare providers against one another but also created rifts in a community already facing severe marginalisation. Similarly, healthcare providers frequently place the responsibility for diabetes management squarely on the patient, making them ‘morally liable for their own ill health’, as Rebecca Seligman and colleagues have highlighted in their work on Mexican immigrants with diabetes in the city of Chicago (2015: 64). Many physicians believed that structural and social interventions were not part of their jobs, preferring to focus solely on clinical treatments without being concerned for the underlying social and structural roots of diabetes (Mendenhall et al. 2017). This arbitrary dividing of responsibility is harmful and perpetuates the deeper structures contributing to diabetes. It also conflicts with how people living with diabetes view their own diabetes aetiologies. Many people who spoke with Seligman et al. (2015) attributed their diabetes to structural factors, such as interpersonal violence, poverty, and unemployment, indicating that the biomedical emphasis on individual patient responsibility overlooks patients’ lived experiences with diabetes.

Diabetes management is complex and fraught with overlapping layers of meaning. A major theme in the anthropological literature on diabetes is that of responsibility and control over diabetic bodies. Biomedicine, in its fervent pursuit of individualised health, places the locus of control directly onto the patient to manage self-care; when diabetic bodies do not behave according to biomedically prescribed plans, the onus of responsibility falls squarely on the patient. Biopower, or the regulation of human life at the population and individual body levels, is used to discipline misbehaving bodies into docile conformity through state-controlled sites, such as schools, hospitals, and prisons (Foucault 1976). Bodies become political and economic battlegrounds between policymakers and healthcare providers as debates rage over the best ways to prevent and treat diabetes, while at the same time these forces exert control over the individuals who are inhabiting the very bodies at the centre of these debates (Gibson and Dempsey 2015).

One example of biopower in a colonisation framework is among Indigenous communities in Canada. Indigenous children at residential schools in Canada developed negative relationships with food due to malnourishment, abuse, punishment, and humiliation perpetuated in the residential school environment (Howard 2014). These collective traumas and negative lived experiences of residential school food were passed on to subsequent generations, where, aided by a loss of traditional food pathways due to aggressive colonisation by the Canadian government, they are embodied as diabetes among Canada’s Indigenous communities. Indigenous interactions with contemporary healthcare systems in Canada have reinforced colonisation through racism, stereotyping, and discrimination (Jacklin et al. 2017). Patients reported being repeatedly ignored or patronised at medical appointments despite having travelled long distances for check-ups. Physician shortages and geographic isolation from clinics contributed to diabetes mismanagement, as patients sometimes waited for several months without seeing a physician or having their medications refilled. In both cases, colonialism reinforced the stereotype of misbehaving diabetic bodies and placed the blame firmly on Indigenous communities for their own diabetes while diffusing blame from the state-sanctioned violence of colonisation that is responsible for diabetes perpetuation.

One of the most fundamental contributing factors to biopower and diabetes is the question of control over the very parameters of health. US doctors who led medical missions to Belize taught the locals that diabetes was the individual’s responsibility, rather than the doctor’s liability (Moran-Thomas 2019). This biomedical focus on patient responsibility for diabetes maintenance absolved doctors of the obligation to consider the roles of broader social, economic, and political milieus in which their patients lived. Doctors did not spend much time helping patients identify the early warning signs of diabetes but simply told them to lose weight and get more physical activity, despite limited access to healthy, affordable foods, safe infrastructure for outdoor activity, or disposable income for gym memberships. Amy Moran-Thomas notes that this lack of comprehensive medical care is notable because, as diabetes is not transmitted between people, there is less biomedical focus on the ways in which people’s interactions propagate the disease and more on the individual’s genetics and decisions that make someone more at risk for diabetes, despite the blatant social risk factors. As such, patients are blamed for noncompliance, frequently without evidence, despite the structural factors that exacerbate diabetes risk.

The physical body is also shaped by cultural metaphors of health and diabetes and naturalises certain cultural norms while stigmatising others (Martin 1987; Solomon 2016; Hardin 2018). This is evident in the ways in which diabetes is stigmatised due to its socially perceived associations with uncontrollable food consumption (Aghamohammadi-Kalkhoran and Valizadeh 2016; Broom and Whittaker 2004; Ferzacca 2012; Lee et al. 2015). For example, Amanda Willig and colleagues (2014) found that African American women with diabetes reported experiencing diabetes stigma when they were the only ones in their extended families with the disease, as they were perceived as having no self-control over their health and were treated as children without the ability to make decisions for themselves. Denise Bockwoldt and colleagues (2016) found that African Americans are less likely to adhere to insulin-based medication regimes due to a plethora of negative emotions associated with insulin, such as self-blame, frustration, fear of complications, and of being a burden on loved ones. Some study participants admitted to hiding their insulin from their loved ones so as to not be outed as insulin dependent. These results were replicated by Kryseana Harper et al. (2018), who found that family-based diabetes stigma was common in their mixed-gender African American cohort. This stigma both perpetuated a reduction in diabetes self-management and created resentment towards diabetes for the disruption it caused to peoples’ personal lives.

Additionally, healthcare providers sometimes stigmatise people with diabetes if they do not lose weight or adhere to their prescribed medication regimens, which further discourages people from visiting a healthcare provider (McNaughton 2013; Shahab et al. 2019). People with diabetes who need to inject insulin may also be mistaken for and stigmatised as drug users should they need to inject insulin in public (Balfe and Jackson 2007; Bock 2012). In the United States, a country in which productivity is highly valued, any loss of individual productivity is devalued and stigmatised, particularly if the cause of that loss is concealed or is a manageable disease, as diabetes is commonly thought to be (Ferzacca 2012; Hopper 1981; Shahab et al. 2019). External stigma over perceived loss of productivity and lack of individual discipline that are thought to contribute to diabetes become internalised among those living with diabetes or are involved in its treatment, and perpetuate individual and biomedical diabetes mismanagement (Aghamohammadi-Kalkhoran and Valizadeh 2016; Ferzacca 2012; Seligman et al. 2015).

Anthropologists reject the overly simplistic categorisations of diabetes as a disease of racial and genetic determinism, preferring instead to trace the overlapping intersections between biological pathways and structural factors. In her work with the Native community in Chicago, Margaret Pollak (2018) notes that anthropologists reject the thrifty genotype hypotheses, which speculates that people are biologically predisposed to diabetes, which is then triggered by social environments. Instead, the alarmingly high diabetes rates among certain communities are explored in relation to external influences, such as colonisation and land loss among American Indians in Chicago. Diabetes care is also a multigenerational, life-long social activity in Native communities, with friends and family helping one another inject insulin, manage medication schedules, and eat diabetes-friendly meals. In this way, diabetes is transformed from a biological disease into a form of social cohesion against colonial forces that attempt to destroy Native physical and collective bodies.

As these studies and ethnographies highlight, the biological and social spheres of diabetes consistently intersect, and these intersections manifest differently depending on the population and their social, psychological, and structural circumstances.

Syndemic interactions

In keeping with the anthropological emphasis on complex, multileveled interactions that underscore disease perpetuations, scholars have drawn attention to the ways in which structural factors exacerbate diabetes outcomes by focusing on parts of the world that have reported abrupt increases in diabetes prevalence (Mendenhall 2012; Weaver 2018).

The theory of syndemics has gained traction in anthropological diabetes research, as it provides a framework for understanding the social, political, and economic underpinnings of illness and disease interactions. Syndemics examines the concentration and deleterious interaction of two or more diseases or other health conditions in a population, particularly as a consequence of social inequality and the unjust exercise of power (Singer 2009: xv). Multiple anthropologists have observed that diabetes is a common component of syndemics research due to its increased incidence and prevalence (Everett and Wieland 2013; Lerman 2017, 2022; Mendenhall 2012; Ryan and Raja 2016; Weaver 2018; Weaver and Mendenhall 2014). Specifically, diabetes interacts synergistically with two other common occurrences: depression and food insecurity.

Research indicates that slightly over one-third of individuals with diabetes will develop depression and vice versa, and that individuals with diabetes are twice as likely as individuals without diabetes to develop depression (Gask et al. 2011; Katon et al. 2010; McSharry et al. 2013; Mendenhall 2012). While some evidence implicates depression as a precursor and major contributor to diabetes (Joseph and Golden 2017; Mendenhall 2015; Vrshek-Schallhorn et al. 2013), diabetes also increases the risk for developing depression (Katon 2010; Gask et al. 2011; Nash 2013). Depression, in turn, contributes to decreased diabetes self-care and access to healthcare, including decreased glucose monitoring, missed medical appointments, and increased likelihood of diabetes complications through diabetes mismanagement (Nash 2013; Weaver and Hadley 2011). Conversely, diabetes contributes to depression by deteriorating social networks, draining financial resources, and changing dietary patterns (Katon et al. 2010; McSharry et al. 2013). Food is a cohesive force: holidays, meetings, family meals, and casual gatherings often include food sharing (Lerman Ginzburg 2022b). When an individual cannot partake due to diabetes-related dietary limitations, the ensuing feelings of guilt or shame may provoke reluctance to attend the event, adding to social isolation. This is particularly true of women, who tend to be the primary cooks in their families and do not always receive support from their families to prepare healthier meals (Lerman Ginzburg 2022b).

The relationship between food insecurity and diabetes is rooted in structural factors. For example, Olayinka Shiyanbola and colleagues (2018) found that African Americans with diabetes attributed their disease outcomes to eating habits that were rooted in slavery and an ensuing consistent lack of healthy foods. Shiyanbola and colleagues’ work adds on to Lisa Sumlin and Sharon Brown (2017), who found that African American women attributed their diabetes rates to dietary patterns and cultural culinary practices that are grounded in slavery and expounded by centuries of poverty. Populations that have been abruptly introduced to and adopted Westernised dietary patterns, such as the Pima Native Americans in Arizona and the Nauruan Islanders in Micronesia, are exceptionally vulnerable to developing diabetes due to rapid changes in nutrition, through increased consumption of highly processed foods that are high in sodium, fats, and carbohydrates (Hardin 2015; Smith-Morris 2006; Solomon 2016; Weaver 2018). Western eating patterns were oftentimes forcibly imposed on unwilling communities, and these forced eating patterns went hand-in-hand with overlapping structural factors that accentuated the incidence of diabetes among the affected communities (Hardin 2015; Smith-Morris 2006).

Diabetes and food insecurity are also correlated with poverty, particularly in combination with the absence of affordable healthcare and housing (McNaughton 2013; Mendenhall 2015; Vest et al. 2013). In their study on diabetes among Canadians living in poverty, Dennis Raphael and colleagues (2012) found that since the government’s public policy dictates the incidence and experience of poverty, and that poverty and ensuing material deprivation are contributors to increased rates of diabetes, mitigating diabetes levels require changes at the government level, and not merely at the individual level. Studies such as these serve as a reminder that food insecurity cannot be attributed merely to individual-level food decisions, but also depends on government policies that impact access to financial assistance for low-income families. For example, my research in Puerto Rico explores participants’ experiences of eating whichever food was most easily economically and geographically accessible due to an influx of food taxes, high-end supermarkets in gated communities, and economic and political instability (Lerman Ginzburg 2022a). Thus, merely turning health and treatment into easy formulae ignores the agricultural, historical, social, and political specificities that are interwoven into food consumption (Emily Yates-Doerr 2015). This critical scholarship underscores the need for ethnographic research that situates food insecurity and diabetes not merely within biomedical milieus, but also as products of social, political, and economic forces.

Just as structural factors, such as interpersonal violence and poverty, are critical syndemic perpetuators, similarly community responsibility and collective care play a role in diabetes management. Jessica Hardin (2018), in her ethnographic work on cardiometabolic disorders in Samoa, highlights how healing is both individualistic and collective that both ‘transform individual bodies while impacting the broader community, making evident the problems of the collective in the bodies of individual Christians’, a process which she calls ‘embodied critique’ (5-6). Hardin found that her Samoan participants encouraged one another to link illness events with the state of their relationships. Concepts such as embodied critique move beyond individual bodies to encompass the broader community and the structural factors that underlie diabetes aetiology. While part of the responsibility was on the individual to manage their diabetes, including taking medications, structural factors like poverty and unemployment also contributed to diabetes, which made it harder for study participants to make the necessary changes.

In Puerto Rico too, the participants I worked with linked diabetes with broader socio-political problems, such as Puerto Rico's status as a US territory (Lerman Ginzburg 2017, 2022a). The 1917 Jones Act forced food shipped to Puerto Rico to be marked up in price to compensate for the shipping, but this cost is borne by Puerto Ricans. Their experiences of eating whichever foods were most easily economically and geographically accessible connected food insecurity and diabetes with US colonisation and political nepotism. People developed depression because of the high unemployment and crime rates, ate large quantities of cheap high-fat food because of food insecurity and food apartheid, and developed diabetes. Similarly, in tracing the syndemic underpinnings of diabetes and COVID-19, anthropologists like Merrill Singer (2020) have commented that NAFTA created ‘diabetes-inducing’ environments in Mexico by triggering a growing dependence on unhealthy food imports, mostly from the US, amid a national agricultural deficit that limited Mexicans’ access to the fresh produce grown in their own backyards. The rapid change in agricultural output and ensuing urbanisation created situations of stress, identity loss, and profound changes in dietary practices that contributed to diabetes risk.

Corporate influences on diabetes

Most of this entry has focused on the structural factors that impact the lived experiences of diabetes. However, there is also a corporate component to diabetes that impacts the quality of care. Medical anthropologists studying diabetes in the United States have argued that clinical care in the country is increasingly driven by large corporations, with a mounting emphasis on financial and managerial logics that reduce diabetes care to a narrow set of quantifiable metrics (Hunt et al. 2019). Healthcare providers measure successful diabetes management by monitoring glucose and HbA1c levels, medication regimen adherence, and significant weight loss, all of which are easily enumerated but difficult to achieve due to the multiple structural barriers associated with diabetes. Health insurance plans in the US use these quantitative parameters to determine approval of healthcare expenses while ignoring the underlying structural and social barriers that might prevent patients from managing their diabetes. Scholars also argue that screening, diagnosis, and treatment guidelines over the past forty years have changed under pressure from the pharmaceutical industry despite weak evidence of efficacy in order to benefit from promoting expensive medications to unsuspecting patients (Hunt et al. 2019). Additionally, easing the diagnostic criteria for diabetes means that more people are diagnosed with the illness, and therefore required to take medications. In tracing these linkages, scholars have recommended that individual vigilance over diabetes management be augmented with systemic surveillance by healthcare providers and by policymakers who are at the forefront of medical innovations, healthcare funding, and institutional policies (Rock 2003b). Such recommendations reiterate that structural factors that impact underserved populations with high diabetes rates are rooted in unjust policies that can only be remedied at a higher political level.

Conclusion

Diabetes continues to be a globally pervasive disease, particularly in low- and middle-income countries which are facing rapid changes in the mechanisation of labour, political stability, economic independence, and profound social unrest. Despite the advances in biomedical treatment options, diabetes continues to afflict millions of people around the world, which indicates that there is a pressing need for accessible treatment options. For example, the price of insulin is ten times more expensive in the US than in any other developed country, leading many people with diabetes to ration their insulin and risk their health if their health insurance doesn’t cover the cost (Rajkumar 2020). This travesty highlights the need for thorough healthcare reform in the US in particular. Furthermore, it is imperative that the structural factors underlying diabetes in societies throughout the world be considered during treatment. Multiple, overlapping factors, such as colonisation, poverty, and unemployment are inexorably linked to diabetes, and it is those factors which we must address as we move forward with diabetes treatment options. Thinking of syndemics is a useful way for digging more deeply into the aetiologies of diabetes, so that culturally-specific and affordable preventions might be developed and rapidly implemented.

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Note on contributor

Shir Lerman Ginzburg is an assistant professor of public health at Massachusetts College of Pharmacy and Health Sciences. Her research interests include mental health, diabetes, food insecurity, health disparities, Hispanics, obesity, syndemics, and colonisation. She earned her PhD in medical anthropology from the University of Connecticut. She practices yoga and meditation in her free time.

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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.

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

Waste

Felix Stein — Wed, 14 Aug 2019 07:49:34 +0000

Patrick O'Hare

University of Manchester

Initially published 14 Aug 2019

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

Abstract:

From plastics in the oceans, to the export of toxic materials, waste is an issue that increasingly attracts public attention as well as demands for political and environmental action. Within the social sciences, writing on waste has clustered around the emergent and growing sub-discipline known as ‘discard studies’. This entry looks at how anthropologists have broached the issue of waste, from a long-standing interest in pollution, to more recent explorations of how humans and waste constitute one another. It is divided into three main anthropological approaches to waste: a symbolic-structuralist approach focused on the relations between order/disorder and the sacred/profane; an economic-materialist approach that is more concerned with waste, value, and the connections and flows between local and global scales; and intersubjective-posthuman approaches that focus on how waste makes people as well as how people make waste. Through fine-grained ethnographies of engagements with waste and theoretical contributions, the anthropology of discards highlights how diverse waste’s materialities and representations really are, and helps to challenge taken-for-granted associations between waste, stigma, and an absence of value.

Introduction^[1]

Just as ever-growing quantities of waste have increasingly attracted the attention of governments, activists and communities, the issue of waste at a global scale has risen rapidly up political and research agendas since the turn of the millennium. Shocking photographs and videos that make visible the harm that wasting causes, such as those of the North Atlantic garbage patch (estimated to measure hundreds of kilometres) and the plastic-filled bird carcasses of photographer Chris Jordan, have captured the public imagination around the topic of plastic waste in the oceans. At the same time, waste has become an issue of international diplomacy and scandal, as a series of countries in the Global South have begun sending contaminated waste back to its sources in the Global North (see the ongoing dispute between the Philippines and Canada, Choi 2019). The initial classification of our current age as the Anthropocene by geologists was based in part on the fact that signs of human activity and wasting – plastics, metals, radionuclides – could be observed deep into the Earth’s crust (Zalasiewicz & Waters 2015). Indeed, global warming, which places human, animal, and plant life as we know it in mortal peril, is caused by a form of waste: the release of carbon emissions as petroleum deposits are consumed.

In tandem with these broader developments, research into waste has escalated both in anthropology, and across the social sciences and humanities more generally, giving rise to the interdisciplinary subfield of ‘discard studies’. Yet do we necessarily know what waste is? As the popular expression ‘one man’s trash is another man’s treasure’ hints at, rubbish can very often be in the eye of the beholder. This encyclopaedia entry explores three analytic approaches to waste taken by anthropologists, as set out and discussed by Alexander and O’Hare (2020): symbolic-structuralist; economic-materialist; and intersubjective-posthuman.

In a symbolic-structuralist approach (e.g. Douglas 2002 [1966]; Leach 1989 [1964]), waste can be understood as what emerges through interactions between the sacred and profane, which are structurally bound to one another, a focus that can be traced back to the work of Emile Durkheim (1915), a founding father of social anthropology and sociology. In this perspective, waste is usually considered to be social and relational rather than an objective quality or categorization of phenomena in the world. The second analytical approach, heralded by Michael Thompson’s (1979) Rubbish theory, launched an economic-materialist approach to understanding the circulation of materials between different regimes of value. Within this approach, an increasing number of scholars (e.g. Gille 2007; O’Brien 2008) have focused on the materiality of waste within broader political and economic structures that act to shape how and where it appears. A third approach to the study of waste can be called ‘posthuman-intersubjective’. It has been gathering strength since the 2010s and concentrates on the subjects that waste and various forms of waste-work engender. This includes workers whose identities are tightly bound up with waste – such as waste-pickers (Millar 2018) – as well as the more general encounters with discarded materials that happen as we separate out our recyclables (c.f. Hawkins 2006), or unexpectedly meet with a tangle of trash in the street (c.f. Bennett 2009). Waste in these perspectives is given varying degrees of agency: it is seen as acting and acting upon us in ways that are outside our conscious control.

By emphasising some aspects of human-waste relations while neglecting others, each approach – symbolic-structuralist, economic-materialist, and posthuman-intersubjective – captures a part of but not the whole picture. Thus, anthropological work on waste generally foregrounds the different epistemological consequences that specific representations of waste can have, including the removal of agency from so-called ‘wasted lives’ and value created from territories depicted as ‘waste-lands’. Far from being a load of rubbish, the anthropology of waste also brings cultural perspectives into conversation with questions of power, class, religion, materiality, and economics that are at the heart of contemporary society.

Symbolic-structuralist approaches

The anthropology of waste per se is quite recent. The relatively small societies that anthropologists traditionally studied did not generate levels of waste on the scale of today’s consumer societies, and whilst materials (i.e. food waste) were inevitably discarded, such practices do not appear to have been deemed worthy of serious attention.^[2] A relevant precursor, however, is the study of purity and pollution. Pollution in anthropological discourse has had a specific meaning: a stigma linked to people or substances – generally as a result of a mixing or conflation of things that should be kept pure.

The social anthropologist most associated with the study of purity and pollution is Mary Douglas, known for classifying dirt as ‘matter out of place’. Douglas was an English social anthropologist who conducted fieldwork with the Lele ethnic group who live in the modern Democratic Republic of Congo (DRC), but her social theories were influential beyond African anthropology. In particular, her most well-known book, Purity and danger (1968), shares with structuralists like Claude Lévi-Strauss the idea that prohibitions, taboos, and attachments have very little to do with the concrete thing that is prohibited, and much more to do with an interplay of symbols that reflect deeper organising principles of society. Douglas argued that the prohibition of pork in Leviticus, for example, could not be explained by the ‘dirtiness’ of the animal but lay instead in the way that pigs confounded the religious classifications of animals (hoofed/ non-hoofed; cud-chewing/ non-cud-chewing, etc.)

For Douglas, the human mind is an ordering mind, and rituals of pollution and purity tend to cluster around the anomalies that confound cultural systems of classification. In other words, cultural classification comes first, and determines ideas of pollution. Those who take for their area of enquiry matters of pollution, dirt, and waste engage with her ideas in part because the ‘matter out of place’ phrasing so succinctly defamiliarises us from the notion that what constitutes waste should be obvious and universally accepted. Rather than waste, however, she was primarily interested in the symbolism of ritual pollution in religious and what she called ‘primitive’ classificatory systems. This, as Martin O’Brien notes, makes Douglas a somewhat awkward fit for discussions of the billions of tons of municipal solid waste that arrive daily at the world’s landfills (2008: 128).

Pollution as a traditional anthropological concept is different from contemporary, everyday understandings of environmental pollution embodied in car exhaust fumes, smoking industrial chimneys, and frothing, chemically-polluted rivers. Its characteristic areas of study include menstruation – since menstruating women are viewed as polluted in many societies and are, therefore, quarantined (c.f. Kristeva 1982) – and death, where those working with or touching the dead are considered polluted and thus to be avoided or approached with ritualised caution (Parry 1994). Nevertheless, looking to some of the early approaches to pollution can help us understand the roots of the first anthropological analyses of waste.

Early anthropologists (e.g. James Frazer) exhibited two tendencies regarding pollution (c.f. Forth 2018). One was to locate pollution in the properties of substances and things as opposed to the relations between people and categories. A second was to differentiate between forms of pollution aversion that exemplified either ‘primitive’ hygiene measures or reflected religious ideas of the sacred and profane. However, these studies tended to centre on polluted people rather than the things that polluted them, whether these were menstruating women, Indian untouchables, or stigmatised gravediggers (Jewkes & Wood 1999). Where there was an interest in things, these were often substances ejected or detached from the body, including menstrual blood, nail clippings, and excrement. This focus on bodily substance was later taken up by Michael Thompson (1986: 1) to argue for the culturally relative nature of waste. That there is nothing intrinsically polluting about blood, hair, or snot indicates that there is no ‘waste in nature’, he argues, explaining that these might be valued, feared, or treated with indifference by different cultures or indeed classes.

This clustering of ideas of pollution and purity around substances emanating from the body has nevertheless given rise to quite different theoretical approaches, including those inclined to a universalist rather than relativist nature. Exemplary of the latter approach is Julia Kristeva’s (1982) psycho-analytical theorisation of abjection, which draws on the work of Douglas. For Kristeva, threats to the preservation of the integral subject inspire pollution beliefs, so that a body that leaks wastes and fluids – externalising what should be inside – violates an important inside/outside boundary and risks the dissolution of the self into the other. One example that she gives is the instinctive, visceral reaction she has to the thin film that forms on milk and that the body repels: once this has entered the mouth, and mixed with saliva, one is essentially expelling a part of oneself.

Within anthropology, Valerio Valeri (2000) draws on Kristeva and fieldwork with a small group of hunter-gatherers in Eastern Indonesia to make broader theoretical claims, ultimately arguing that ‘the embodied subject’s fear of disintegration through the body and by the body is the ultimate basis for the notion of pollution’ (2000: 111). Valeri objects to the way that Douglas treats pollution as a secondary phenomenon resulting from processes of classification. By exploring pollution beliefs around bodies, substances, and animals, he shows that not all things considered polluting are classificatory anomalies, nor all classificatory anomalies regarded as polluting. Douglas’s legacy has persisted over time and extended beyond anthropology. Take the work of a student of Douglas, Laurence Douny, on domestic waste among the Dogon, an ethnic group in Mali numbering roughly half a million people. In Douny’s analysis,

“[Dogon] categories of waste enact a conceptual ordering of daily life that allows them to set up and to maintain their socio-cultural and symbolic boundaries. It appears that through the naming of rubbish, Dogon take control over the fuzzy reality of the matter.” (2007: 313)

For example, the Dogon praise certain forms of dirt – food left on pots, sweat, and smoke – as signs of a lively, busy, and prosperous household, while people who are always clean are thought to be work-shy. Negative forms of dirt include the highly ritually polluting – menstrual blood and body solids – and the simply bothersome, such as daily sweepings and tourist trash. This description of order imposed on an assumedly formless world through the cultural imposition of different categories and classifications resembles a symbolic-structuralist approach. Yet Douny is careful to note a relative fluidity and dynamism in categorisation processes, explaining that “the local classification of refuse is versatile, being a daily practice that constantly redefines and generates new categories of waste with which differing world-views are associated” (2007: 313). Plastic waste brought by outside visitors, for example, might be assimilated into existing waste categories but can also be recovered as a resource that can be fashioned into craftwork sold back to tourists.

Despite its plentiful insights, Douglas’s approach is not the primary framework that guides the contemporary social science of waste. Contributing factors have been its binary nature; her lack of focus on waste per se; and the theoretical consideration of only one side of a ‘primitive’/’civilized’ binary that itself has long been discarded. To theorise the ever-greater flows of waste across the planet it would be necessary to develop approaches that attended to politics, economics, and the material stuff of waste itself.

Economic-materialist approaches

If earlier anthropological engagements with ‘rubbish’ in the religious sphere were concerned with the sacred/profane and pure/polluted dichotomies, economic anthropology brought in another important binary: waste and value. These are critical categories for Thompson’s recently reissued Rubbish theory (2017 [1979]), whose theoretical ambitions, Josh Reno argues, go ‘far beyond anything heretofore attempted by anyone in discard studies’ (Thompson 2017: xi). Against the binaries of symbolic-structuralist models, Thompson introduces a tripartite schema to help understand how objects, from houses to antiques, can undergo radical transformations in value. He starts out with two categories of goods common to economics: transient and durable. A classic example of a transient good is a car, which decreases in value from the moment that it is purchased until it is reduced to scrap, while durables, such as certain antiques, ‘increase in value over time and have (ideally) infinite life-spans’ (2017: 25). Thompson’s initial interest is in how an object can cross over from one category to the other, as they do in the case of ‘vintage’ cars, re-valued pieces of furniture, and works of art. The question precipitates a new third category for goods that are neither decreasing nor increasing in value but are of no value at all: rubbish.

Whilst at first glance Thompson appears to be discussing something that fits with normative ideas of waste, his ‘rubbish’ category is in fact quite specific. Although he explicitly describes the rubbish stage as denoting a value-less state, the examples he uses – which later move into the category of durables – never seem to attain the state of zero value. Stevengraphs^[3], for example, steadily decreased in value throughout the first half of the twentieth century before reaching relatively astronomical prices from the 1960s onwards. Yet even at the Stevengraphs’ point of lowest value, Thompson quotes a source noting that there were still probably ‘a few discerning people quietly collecting them for their decorative charm’ (44). Thompson’s rubbish category is thus restricted to a class of objects that still have owners, have depreciated in value, but have not been disposed of. This constitutes a restricted category of rubbish, excluding what most would think of as waste and the discarding practice that others would regard as the key moment when objects pass into a waste category. Drawing on Douglas’s assertion that ‘dirt is simply matter out of place’, Thompson is not particularly interested in the lowly objects that do not attract attention because they are widely regarded to be in the right place: the dustbin or landfill. His concern lies in radical value transfers as a source of social transformation.

Nevertheless, the aspiration to understand material flows and the creation and destruction of value in British society arguably laid the foundations for more recent social science studies into globalised flows of discards and their connection to domestic waste practices (Alexander and O’Hare, 2020). This scholarship is interested in the question of value but not necessarily as the polar opposite of waste, with attention directed towards the political economy and government of waste, and how these are impacted by contemporary knowledge about waste and its effects. Gille’s concept of ‘waste regimes’, for instance, includes the idea that at particular historical conjunctures, one kind of waste and its treatment can be taken symptomatically or even synecdochally by the state to stand for all generated waste. This is neatly illustrated by the 1950s Hungarian state emphasis on collecting scrap metal, what Gille calls the ‘metallic regime’ of post-war recovery communism. While metal can be easily stored, the stockpiling of toxic chemicals, ignoring their unique chemical composition, meant that often barrels rapidly corroded and leaked, opening the way for subsequent waste regimes that were more centred on questions of safety. Here we see a focus on materiality, the state, cultural representations, and the political economy of waste replacing the idea of unique ‘cultural’ approaches to waste.

Historical works (e.g. Strasser 1999, Zimring 2005, Thorsheim 2015) have shown the long lineage of domestic practices of material recovery and re-use. Recently attention has turned to the global nature of the recycling industry and how this links domestic practices to transnational flows of stuff. Thus, Catherine Alexander and Joshua Reno’s collection, Economies of Recycling (2012), mobilised economic anthropology and a focus on how people use, consume, and engage with objects (material culture studies) to destabilise conventional understandings of household and global economies. Contributors analysed the profoundly unequal global flows of waste materials – textiles, ships, electronics, uranium, medical discards – in terms of their location of production and recycling – concerns also taken up by The Waste of the World project and its subsequent publications.^[4] The collection also highlighted how various forms of waste labour and waste processing have been cast as redemptive, drawing on a Protestant-inflected language of salvation. Britt Halvorson’s (2012) ‘No Junk for Jesus’ chapter, for example, examines the flow of medical discards between Lutheran churches in the United States and Madagascar, where the sorting of waste from viable donation constitutes a form of religious service. One of the key benefits of this global approach was to highlight that, for all the focus on consumer and domestic recycling practices, household waste accounts for only a fraction of the waste stream.^[5]

Construction waste, for example, makes up a large percentage of urban waste streams and it has served as a useful lens through which anthropologists have studied wider questions of land speculation, urban development, and dispossession. Gastón Gordillo (2014) analyses how the rubble of different rural development schemes in northern Argentina, from Jesuit agricultural collectives to soy production, can provide clues to changing socio-economic forces. Across the world, Erik Harms’ (2016) study of two housing developments in Saigón is 'more concerned with the conversion of wastelands than with waste material per se’ (Alexander and O’Hare, 2020). Yet a link to Gordillo’s work can be found in Harms’ exploration of the ways in which existing productive uses of land (in his case, smallholder farming) are ignored whilst urban development is championed, through a dominant Vietnamese trope of ‘civilising the southern wasteland’. In both cases, it is not symbols, but the materiality of rubble, bricks, building plans, and maps that tell us something about societies and the utopias that transfigure and disfigure landscapes at distinct moments in time.

For Harms, waste is evoked in order to open up space for economic and political intervention and value creation through the construction of real estate. This is only one of a number of possible relations between waste and value. As Catherine Alexander and Andrew Sanchez (2018: 3) note, waste can be seen as the antithesis of value, lost value, the enabler of value, or simply another word for resource. Their 2018 volume on indeterminacy, waste, and value echoes the work of Thompson in that they introduce a third term – indeterminacy – to trouble the stubborn binary between waste and value. Rather than proceeding from an analytical definition of indeterminacy, they start from ethnographic examples to highlight different modes of indeterminacy for people and materials. They share with Douglas an interest in the people that fall through the cracks of classificatory systems, suggesting that such systems are by their very nature exclusionary and key to creating discarded populations. Simultaneously, their idea of indeterminacy challenges both Thompson’s scheme of distinct value positions (transient, rubbish, durable) and Douglas’ framework of single, unified cultural systems of order (2019: 15).

Materialist scholars have gone so far as to criticise Douglas for ignoring the qualities of dirt and its alleged dangers in the study of pollution, as part of an alleged ‘rubbish idealism’ (O’Brien 2002: 133). For this new generation of anthropologists, with eyes trained on waste’s materiality, its odours, and hazards as well as creative potentials, nothing could be further from their position. Economic-materialist analyses of waste in anthropology have tended to highlight how waste’s materiality influences its nature and appearance even if it does not determine it fully. They have also thought of new ways in which waste may be extracted from its classification and become re-valued.

Intersubjective and post-human

For symbolic-structuralist approaches, a fundamental question is why different things are considered waste in different cultures – and the answer given is their culturally-specific classificatory systems. As Alexander and O’Hare (2020) note, ‘economic-materialists shift the question to how the dynamics of waste flows link domestic and global industrial scales, and answer it by examining… flows in a globalised schema of reproduced inequalities'. A third thematic concern among anthropologists, which also has to do with the how, but often at different scales, is a focus on subjectivity and the kinds of relationships and identities that are created through associations with waste. For scholars such as Gay Hawkins (2006), creating subjectivities by engaging with waste is at once an ethical process and similar to actor-network theory (ANT) it signals that waste itself has agency. Thereby it acts, and is acted upon. Household recycling, for example, is an everyday ethical act that becomes drummed into the body – embodied – through repetition and practice.

The role of waste and dirt in creating and sustaining oft-unequal subjectivities has a long history of study inside and outside anthropology. In colonial public health policies, for example, we find two interlinked processes: colonial subjects are often portrayed as dirty, backward, and thus in need of a civilising mission, whilst at the same time the most oppressed people are often called upon to carry out the jobs seen as ritually and hygienically polluting, such as waste work. Race, waste, and power often come together to mark out such distinctions. In the American Philippines (Anderson 1995), as in British India, Australia (Bashford 2003), and elsewhere, colonial governments used public health measures such as vaccines, quarantine, and segregation to demarcate physical and racial boundaries and govern unruly populations. These are far from purely historical questions: consider the furore in early 2019 over a Fox News host’s comment, echoing similar statements made by Donald Trump, that mass migration made America ‘poorer, dirtier, and more divided’, an assertion he supported with images purporting to depict garbage and trash left behind by migrants at the US-Mexico border. Indeed, representations of the dirty colonised other have arguably been transferred onto the figure of the immigrant other (c.f. Thorleifsson 2017), although proletariat or lumpenproletariat populations have also often been the target of similar discourse and measures of bio-political governance.

‘Waste colonialism’ and its sister term ‘garbage imperialism’ are nowadays primarily used to describe instances or patterns of rich countries dumping their waste on poorer ones. This is to some degree limited by the Basel convention^[6] and a spectrum of injustice can be detected in such practices, which range from the export of recoverable, non-toxic recyclate to the dumping of contaminated materials. As Reno notes, ‘not only waste but also waste regimes have been exported and experimented with abroad through colonial and imperial formations’ (2015: 565). Max Liboiron likewise argues that ‘waste colonialism goes beyond the export of waste from colonial centres to… peripheries’ (2018). Relevant to our discussion of ‘rubbished’ subjects here is her point that dominant interpretative frameworks of hygiene and cleanliness are still imposed on peoples whose landscapes and means of subsistence have already been rubbished or enclosed. Waste-pickers and scavengers, for example, are often cited as exemplary polluted subjects, the discards of modernity, or as indexing global inequality (Reno 2009: 32).

Anthropologists have been able to get behind the headlines and assumptions about waste work through ethnographies of informal waste labour like Rosalind Fredericks (2018) on Dakar, Minh Nguyen (2018) on Vietnam, Kathleen Millar (2018) on Rio de Janeiro, Jamie Furniss (2017) on Cairo, and my own research on Montevideo (O’Hare 2018). In Montevideo, waste-pickers proudly adopt the term ‘classifiers’ to signal the productive and environmentally important nature of their labour and overturn the stigma associated with their previous moniker, ‘rummagers’. Similarly, Furniss (2017) describes how Egyptian Christian minority waste-workers downplay both derogatory titles – such as the Zabaleen – and upper-class attempts to focus on the ‘environment’, emphasising instead their role as cleaners of the city. Nguyen (2018), meanwhile, tracks the complex networks and connections between city and village. In her account, Vietnamese waste traders opt to suffer and even perform stigma in the city in order to amass sufficient capital to build their homes and status in rural villages.

Millar’s longitudinal research with Brazilian catadores at Rio’s Gramacho landfill is a good example of an ethnography that gets close to waste-picker perspectives and seeks to understand their social worlds. She shares with Reno’s (2016) ethnography of an industrial Michigan landfill an attempt to highlight the way that waste work helps to constitute desirable subjectivities, from masculine identities of repair and manual labour to the freedoms of autonomous work outside of waged work. As such, Millar argues that academics should be careful when echoing reactionary commentators by referring to people as surplus or waste even if we simultaneously voice a critique of injustice (cf. Bauman 2003).

While Millar attends to the materiality and plasticity of waste, her focus remains on the human subject. Other approaches, however, also accord agency – and sometimes subjectivity – to waste materials and the non-human animals that co-produce them. Gregson et al. (2010), for example, identify an economically performative aspect of asbestos, as its presence intervenes in ship-breaking work in the EU. Undetected asbestos slows down the work of waste removal and complicates contracts given that these are based on asbestos removal estimates gleaned from initial surveys. Hird (2013) meanwhile, emphasises how the inhuman and nonhuman life forms found within waste (e.g. leachate and bacteria) and their physically, biologically, and chemically determined time-frames 'complicate human technocratic attempts to measure, know, and control waste’ (Alexander and O’Hare, 2020). The engineering time of landfills, for example, is only a hundred years, whereas the thousands of diverse materials assembled there – chemicals, bacteria, organic matter – will continue to interact and have unpredictable effects long beyond this time period.

Reno (2014) has also drawn attention to the ways in which waste can be considered a ‘sign of life’ rather than ‘matter out of place’. Only with great difficulty could we understand scat (animal faeces) through a symbolic interpretative framework or view it as a human problem. Instead, when scat is encountered in the wild, whether by scientists, hunters, or non-human animals, it constitutes a trace of the animal that has left it behind, “not at all a symbolic classification but a sign of life” (9). This approach is post-human in that it relegates the anthropos to just another animal involved in cross-species interactions; indeed, waste more broadly can be thought about bio-semiotically here, as “the outcome of interactions between the many species that both create, and are created by it” (Alexander and O’Hare, 2020).

If forms of ‘scat’ have been around for millions of years, more recent forms of waste material also shape human life rather than being simple reflections of cultures. The continued work of Gay Hawkins (2006, 2015, 2018) has brought some of these instances to light. In her most recent book, she argues that the plastic water bottle was revolutionary in shifting people’s perception of plastic away from ideas of durability towards ideas of disposability and single-use: disposability highlights how things design us. For profitable ‘throw-away’ economies to succeed, people’s habits and customs had to be changed, creating the consumer who only in recent years has begun to rediscover forms of re-use and recycling.

What kinds of subjects might be needed for responsible engagements with waste in the twenty-first century and what can social scientists contribute to this debate? One potential ethical position is that advocated by Jane Bennett (2010), who suggests a re-enchantment with the power of agentive things, waste included. As others have noted, this invitation comes up against the hard reality of certain materials that simply aren’t nice for humans to become enchanted with (from asbestos to nuclear waste). Yet perhaps we can learn from the enchantment and pleasure that waste-pickers and dumpster divers experience both from rummaging in the trash and from carrying out socially responsible acts of recovery and cleaning (c.f. Millar 2018, Barnard 2016). More broadly, what the mutual constitution of subjects and their wastes exemplifies is that in a world of rapidly evolving materials, many of which become waste, human beings change our actions, categories, and indeed ourselves according to our responses to these materials. More circular models of production and consumption are certainly part of this story. Yet in redrawing the line of disposal as a virtuous circle, anthropologists can also bring attention to the ways that subjects who have built positive identities and livelihoods out of waste work might be left out the loop.

Conclusion

Waste does not exist in the singular, and indeed it can be the combining of substances and things in particular spaces that leads to their classification as waste, a point highlighted in the early symbolic-structuralist approaches to waste that has continued relevance today. Purity in waste management is important: muddling materials in composite packaging and baled recyclate makes things very difficult to recycle, leading to landfilling, and accusations of ‘waste colonialism’. The technical dynamics of transnational waste chains might seem far from relativist understandings of what constitutes waste, but cultural understandings of hygiene and cleanliness continue to play an important role. To give just one example, David Evans (2014) has explored how residents’ ideas that food waste caddies are ‘out of place’ on kitchen counters play a role in limiting the recycling of food waste in the UK.

Similarly, there is no single anthropology of waste, and although the different approaches sketched out here imply a chronological arc, residues of earlier orientations can still be found in the present, often in unexpected places. While anthropologists of waste might still be interested in menstrual pollution and taboo, they increasingly deal with global flows of problematic, indeterminate matter that challenge binaries along the sacred-profane or waste-value axes. Categories such as ‘indeterminate’ or ‘rubbish’ indicate some of the mediating roles that waste plays between the creation and destruction of value, as do ethnographies that highlight how people situate themselves pragmatically with regard to ascriptions of waste. Societal stigmas of being associated with waste still matter, but anthropologists have shown how these can be manipulated and disguised, from respected waste traders in Vietnam, to medical discards that are repackaged as benevolent donations as they travel from the United States to Madagascar. By getting its hands dirty, the anthropology of waste contributes to an epistemology of the ever-more complex and voluminous materials that humans and non-humans produce, consume, discard, and digest in our Anthropocenic present.

Note

This article makes some use of material published in Alexander, C. & P. O’Hare (2020). Waste and its disguises: technologies of (un)knowing. Ethnos. DOI: 10.1080/00141844.2020.1796734

References

Alexander, C. & J. Reno (eds) 2012. Economies of recycling. London: Zed Books.

——— & A. Sanchez 2018. Introduction: the values of indeterminacy. In Indeterminacy: waste, value and the imagination (eds) C. Alexander & A. Sanchez, 1-31. Oxford: Berghahn Books.

——— & P. O’Hare (2020). Waste and its disguises: technologies of (un)knowing. Ethnos. DOI: 10.1080/00141844.2020.1796734.

Anderson, W. 1995. Excremental colonialism: public health and the poetics of pollution. Critical Inquiry 21(3), 640-69.

Barnard, A.V. 2016. Freegans: diving into the wealth of food waste in America. Minneapolis: University of Minnesota Press.

Bashford, A. 2004. Imperial hygiene: a critical history of colonialism, nationalism and public health. London: Palgrave Macmillan.

Baumann, Z. 2003. Wasted lives: modernity and its outcasts. London: Wiley.

Bennett, J. 2010. Vibrant matter: a political ecology of things. Durham, N.C.: Duke University Press.

Choi, T. 2019. Ship carrying waste arrives back in Canada from the Philippines (29 Jun 2019). Reuters. Accessed 7 August 2019 (available on-line: https://uk.reuters.com/article/us-philippines-canada-waste/ship-carrying-waste-arrives-back-in-canada-from-the-philippines-idUKKCN1TU0TB).

Douglas, M. 2002 [1966]. Purity and danger. London: Routledge.

Douny, L. 2007. The materiality of domestic waste. Journal of Material Culture 12(3), 309-31.

Durkheim, E. 1915. The elementary forms of the religious life: a study in religious sociology. London: G. Allen & Unwin.

Evans, D. 2014. Food waste: home consumption, material culture and everyday life. London: Bloomsbury.

Forth, G. 2018. Purity, pollution, and systems of classification. In The international encyclopedia of anthropology (ed.) H. Callan, 1-12. New York: Wiley-Blackwell Publishing.

Gille, Z. 2007. From the cult of waste to the trash heap of history. Bloomington: Indiana University Press.

— — — 2013. Is there an emancipatory ontology of matter? A response to Mya Hird. Social Epistemology Review and Reply Collective 2(4), 1-6.

Gordillo, G. 2014. Rubble: the afterlife of destruction. Durham, N.C.: Duke University Press.

Gregson, N., W. Watkins & M. Calestani 2010. Inextinguishable fibres: demolition and the vital materialisms of asbestos. Environment and Planning A 42, 1065-83.

Halvorson, B. 2012. No junk for Jesus: redemptive economies and value conversions in Lutheran medical aid. In Economies of recycling (eds) C. Alexander & J. Reno, 207-34. London: Zed Books.

Hawkins, G. 2006. The ethics of waste. Lanham, Md.: Rowman & Littlefield.

———2018. Plastic and presentism: the time of disposability. Journal of Contemporary Archaeology 5(1), 91-102.

———, E. Potter & K. Race 2015. Plastic water: the social and material life of bottled water. Cambridge, Mass.: MIT Press.

Jewkes, R. K. & K. Wood 1999. Problematizing pollution: dirty wombs, ritual pollution, and pathological processes. Medical Anthropology 18(2), 163-86.

Kristeva, J. 1982. Powers of horror: an essay in abjection. New York: Columbia University Press.

Leach, E. 1989 [1964]. Anthropological aspects of language: animal categories and verbal abuse. Anthrozoos 2(3), 151-65.

Liboiron, M. 2016. Municipal versus industrial waste: questioning the 3-97 ratio. Discard Studies online (available on-line: https://discardstudies.com/2016/03/02/municipal-versus-industrial-waste-a-3-97-ratio-or-something-else-entirely/).

——— 2018. Waste colonialism. Discard Studies online (available on-line: https://discardstudies.com/2018/11/01/waste-colonialism/).

Millar, K. 2018. Reclaiming the discarded: life and labor on Rio’s garbage dump. Durham, N.C.: Duke University Press.

Nguyen, M. 2018. Waste and wealth: labour, value and morality in a Vietnamese migrant recycling economy. New York: Oxford University Press.

O’Brien, M. 2008. A crisis of waste. London: Routledge.

O’Hare, P. 2018. ‘The landfill has always borne fruit’: precarity, formalisation and dispossession among Uruguay’s waste pickers. Dialectical Anthropology 43(1), 31-44.

Parry, J. P.1994. Death in Banaras. Cambridge: University Press.

Reno, J. 2014. Toward a new theory of waste: from ‘matter out of place’ to signs of life. Theory, Culture & Society 31(6), 3-27.

——— 2015. Waste and waste management. Annual Review of Anthropology 44, 557-72.

——— 2016. Waste away: working and living with a North American landfill. Oakland: University of California Press.

Royte, E. 2007. Garbage land: on the secret trail of trash. Columbus: Back Bay Books.

Strasser, S. 1999. Waste and want. New York: Metropolitan Book.

Thompson, M. 2017 [1979]. Rubbish theory: the creation and destruction of value. London: Pluto Press.

Thorsheim, P. 2015. Waste into weapons: recycling in Britain during the Second World War. Cambridge: University Press.

Zalasiewicz, J & C. Waters 2015. The Anthropocene. Oxford Research Encyclopedia of Environmental Science online. Accessed 18 January 2019 (available on-line: https://oxfordre.com/environmentalscience/view/10.1093/acrefore/9780199389414.001.0001/acrefore-9780199389414-e-7).

Zimring, C. 2009. Cash for your trash: scrap recycling in America. New Brunswick, N.J.: Rutgers University Press.

Note on contributor

Patrick O’Hare is a UKRI Future Leaders Fellow in the Department of Social Anthropology at the University of St Andrews. His research focuses on plastic, waste, recycling, and labour cooperatives in Latin America, where he has conducted ethnographic research in Uruguay, Argentina, and Mexico.

Patrick O'Hare, Department of Social Anthropology, 71 North Street, St Andrews, KY16 9AJ, Fife, United Kingdom

[1] This entry has been updated on April 15th, 2020. If you would like to have access to the original version, please contact us via email.

[2] As an indication of this, the first review article for waste dates from 2015 (Reno).

[3] Silk woven pictures produced through a method developed by Thomas Stevens in the 19^thcentury.

[4] See https://www.researchcatalogue.esrc.ac.uk/grants/RES-060-23-0007/read/outputs

[5] In the United States, for example, it is estimated that municipal solid waste makes up just 3% of total waste, with the rest composed of industrial waste (see Royte 2007), although this oft-cited figure has recently been called into question (Liboiron 2016).

[6] The Basel Convention, fully the Basel Convention on the Control of Transboundary Movements of Hazardous Wastes and Their Disposal, is an international treaty signed by 186 states and the European Union and in place since 1992.

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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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.

Open Encyclopedia of Anthropology - Stigma

Race and racism

Introduction

Histories of race, histories of racism

Scientific racism

The Boasian turn

The critique of Boasian racial liberalism

New frontiers in the anthropological study of race and racisms

References

Note on contributors

Diabetes

Introduction

Types of diabetes

Structural roots and barriers to care

Diabetes and biopower

Syndemic interactions

Corporate influences on diabetes

Conclusion

References

Note on contributor

Intellectual disability

Introduction

Early studies and methodological innovation

The social production of intellectual disability

Dependence in Euro-America: Beyond the institution

Cross-cultural research on intellectual disability

Conclusion: Towards an anthropology of competence

References

Note on contributors

Care

Introduction

Structures of care

The ethics of care

Care, kinship and communities

Conclusion

References

Note on contributors

Waste

Introduction[1]

Symbolic-structuralist approaches

Economic-materialist approaches

Intersubjective and post-human

Conclusion

Note

References

Note on contributor

Disability

Introduction: disability and difference, disability and impairment

From a medical to a social model

Stigma, liminality, and reconciling the exceptional with the ordinary

Beyond the Euro-American west

Recent developments

Conclusion

References

Note on contributor

Introduction^[1]