Open Encyclopedia of Anthropology - Disability

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.

Autism

Felix Stein — Sat, 07 Sep 2019 10:21:03 +0000

Ben Belek

The Hebrew University of Jerusalem

Initially published 7 Sep 2019

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

Abstract:

The concept of autism is historically contingent. It did not exist, in any proper sense, before it was invoked by medical and mental health professionals in the twentieth century. This entry aims to shed light on this relatively recent concept. First, it contextualises autism within the broader social, epistemological, and political circumstances of its emergence and ongoing negotiation, showing autism to be a dynamic concept, whose meaning is constantly in flux. Second, it revisits some of the more insightful or influential analyses that autism has received over the years in anthropology and adjacent disciplines. And third, it illustrates that anthropologists have been particularly attuned to everyday experiences of autism, comparing it to other forms of human difference while occupying an ambivalent stance towards biomedical approaches to it. A discussion on how autism might matter for the discipline of anthropology features very briefly in the conclusion.

Disciplinary landscapes

Research into autism tends to cluster around two main analytic poles (see Solomon 2010). The epistemic gap between these analytic poles is considerable, and is sometimes discussed as a barrier to the advantageous progression of autism research at large (e.g. Orsini & Smith 2010, Raz et al. 2017, Yergeau 2010). On one end of the spectrum of autism research are the biomedical disciplines, which typically construe the condition as a neurodevelopmental disorder, and focus on those aspects of autism which they perceive as cognitive and social deficits. Research in these areas tends to address questions relating to the causality of autism, its underlying mechanisms, its symptoms, and its prevalence. Consequently, it promotes interventions of different kinds, working towards the development of better standardised diagnostic procedures for autism, technologies for early detection, methods of behaviour therapy, and in some instances, pharmacological treatment.

On the other analytic pole, there are those disciplines which include anthropology, sociology, history, rhetoric, geography, communication, gender studies, and disability studies. Scholars working in this tradition tend to view autism as a socio-political category, and a central component of individual experience and of social interaction. Studies produced within these disciplines thus focus on such spheres as language and sociality, identity and subjectivity, care work and expertise, knowledge-making and meaning-making, while others go about challenging literature in the biomedically-inclined disciplines.^[1]Moreover, within this analytic pole, autism self-advocacy occupies a crucial position, whereby autistic authors employ their experiential expertise, as well as social and literary theory and an oftentimes keen sense of social and cultural critique, to produce valuable scholarship.

The anthropological study of autism can be grounded in the broader field of the anthropology of disability. The anthropology of disability has been slow to include cognitive disabilities within its purview (with the notable exception of Edgerton 1967). This may be the case because attempting to theorise cognitive difference anthropologically requires challenging one of the discipline's rarely disputed assumptions: that human beings all share similar cognitive capacities (McKearney & Zoanni 2018). Nevertheless, a body of literature has emerged over the past decades that focuses on such topics as dementia, intellectual disability, and mental illness, thereby accepting the challenge of envisioning collective life without assuming psychic unity. Anthropological studies of autism, in particular, can be said to constitute a cornerstone in this emerging anthropology of cognitive disability (McKearney & Zoanni 2018). They have also contributed to broader conversations in such subfields as psychological anthropology (e.g. Mattingly 2017), medical anthropology (e.g. Kaufman 2010), linguistic anthropology (e.g. Ochs & Solomon 2008), as well as social and cultural anthropology more broadly (e.g. Grinker 2007).

In what follows, anthropological insights on autism will be joined with important insights from other disciplines. While anthropological engagements with autism are not necessarily unique in their underlying assumptions or styles of argumentation, they do share some distinct analytical and epistemological commitments. First among those is a systematic engagement with the narratives, experiences, and everyday actions of autistic people, as well as with the distinct social worlds they inhabit. Anthropology's insistence on ethnography carves an important analytical space that acknowledges the role of agency, controversy, and creativity in the category's enactment and negotiation. Also typical in the anthropology of autism are frequent reflections over the type of difference that the category of autism represents, and its comparability to other forms of difference – mainly, culture – with which the discipline has traditionally engaged. Thirdly, anthropologists working on autism have usually remained ambivalent towards the claims of the biomedical disciplines. Their general reluctance to either wholly reject these disciplines' expertise or to uncritically accept it has afforded anthropologists a privileged position from which to attend to the epistemological dynamics surrounding autism.

The emergence of autism

The shifting meanings of autism – as a concept with which to make sense of certain atypical tendencies, a label with which to characterise those who hold such tendencies, and a category into which those so labelled are typically classified – derive from the historical processes of its emergence and subsequent negotiations. The history of autism therefore illustrates its fluid and dynamic nature and highlights the centrality of socio-cultural processes to the category's emergence.

Though a detailed social-historical account of autism remains outside the scope of this entry (but see Evans 2017, Eyal et al. 2010, Feinstein 2010, Nadesan 2005, Silberman 2015, Silverman 2012, Waltz 2013), a brief outline seems warranted. The concept of ‘autism’ had made its first appearance in medical literature in 1911 in the work of the Swiss psychiatrist Eugen Bleuler, when it was construed as a symptom of childhood schizophrenia. The concept had mostly retained this meaning until 1943, when the Austrian-born American psychiatrist Leo Kanner published his article ‘Autistic disturbances of affective contact’. This was the very first publication in which autism (then ‘infantile autism’) was described as a distinct disorder, preceding by a single year a publication by Hans Asperger, a German psychiatrist, in which he described a quite similar condition which he termed ‘autistic psychopathy’.

In the 1960s and 1970s, studies into the 'new' syndrome were becoming increasingly common, yet there was still much confusion. Many researchers and clinicians still interpreted it as a type of schizophrenia, while diagnosticians often associated autistic traits with brain dysfunction, mental retardation, or child psychosis. The 1980s saw an increase in systematic research into autism, as researchers began to demonstrate a clear biological factor to the condition, refuting previous assertions about its supposed psychogenesis. By the 1990s, more rigorous evaluation criteria were being devised, and it became increasingly recognised that autism may be a life-long condition. Subsequently, the condition re-emerged as a neurological developmental disorder – the framing that governs much of the academic discourse today.

An often-told fact about autism is the steep rise of its prevalence rates over the past three decades. It is this rise which has helped fuel false claims about the cause of the condition, including those concerning an alleged link between autism and vaccines (for critical accounts of such claims see Kaufman 2010, Offit 2008, Orsini & Smith 2010, Sobo 2015). Gil Eyal et al. (2010), however, convincingly attribute this rise to the widening of the diagnostic criteria for autism, as well as to improved access to diagnostic services. The authors provide a focused review of the entries for autism in the Diagnostic and statistical manual of mental disorders (DSM), published by the American Psychiatric Association, demonstrating that its diagnostic criteria were becoming more inclusive with every new edition (see also Eyal 2013). It is through these broadening criteria that autism was increasingly being stretched into a 'spectrum', an idea originally coined by Lorna Wing & Judith Gould (1979) that has since become almost synonymous with the condition itself.^[2]

Autism's ontological status

Currently, the term 'autism spectrum conditions' has indeed come to represent a broad range of cognitive and behavioural atypicalities. Though it is generally accepted that the traits associated with the category of autism are shaped by genetic factors (e.g. Geschwind 2009), a focus on biological processes is fundamentally unsatisfactory in fully accounting for the phenomenon. The understanding, representation, and framing of autism significantly depend on variations in any society's hegemonic values, conceptions of normality, dominant norms of social interaction, and organising structures of knowledge and classification. Autism, therefore, is an emergent product of interrelated social as well as biological processes (e.g. Eyal et al. 2010, Grinker 2007, Nadesan 2005, Silverman 2012).

A popular way of making sense of the interplay between the natural and the socially constructed nature of autism is Ian Hacking's (1999) ‘looping effect’. Hacking conceives of people as ‘interactive kinds’ in the sense that they react to the categories, concepts or ideas which relate to them, and change as a result. Consequently, these categories and concepts need to be adjusted to these changes, in a continuous circle. Elsewhere, Hacking (2009a) has demonstrated a mechanism through which autism is thusly constantly reconstituted. This occurs as autobiographies by autistic authors affect the ways their autistic readers come to understand their own experiences as autistic.^[3] Eyal et al. (2014) further acknowledge that the looping effect of autism goes beyond shaping its meaning formalistically through classification and description. Rather, the practical meaning of the label is constantly negotiated as shifting understandings of autism shape – and are then in turn shaped by – autistic people's experiences of their bodies, for example, their styles of interactions, and their daily habits.

Another way to think about autism while considering both its biological and social-structural components is proposed by Elizabeth Fein (2015a). Fein holds that the condition we refer to as autism is at least in part shaped at the interface between a person’s natural tendencies and their social environments. She suggests that in many of today’s Western societies, where social relationships are based on choice rather than obligation, social difficulties at an early age might lead to exclusion and loneliness, as a child’s peers deny her their friendship. This social isolation leads to the exacerbation of the sometimes-subtle tendencies people may have already experienced, and so they are ultimately more likely to fall within the autism category. Damian Milton (2012) similarly focuses on the role of relationality in determining what constitutes autism. He reflects on the fact that both autistic and non-autistic people lack insight into the perceptions of the other, a disjuncture in reciprocity to which he refers as the 'double empathy problem'. Yet despite this being a problem of reciprocity, the power imbalance between the groups enables one group to deem themselves normal, while the other group is reframed as indicating a social deficit.^[4]

Self-advocacy and the neurodiversity movement

Contrary to the view of autism common in the biomedical and psychological disciplines, which considers it a deficit or impairment, approaches based on neurodiversity consider autism to be a natural expression of human diversity (see Bagatell 2007, Chamak 2008, Grinker 2007, Lawson 2008, Savarese 2013, Waltz et al. 2015). This view partly stems from the social model of disability (Ginsburg & Rapp 2013, Oliver 1996, Shakespeare 2006), which acknowledges the crucial role of society and culture in shaping, if not constructing, the category and experience of disability. Neurodiversity advocates further suggest that much as there exists a diversity of gender or ethnicity, so there exists a diversity of cognitive structures; that is, of ways of being (see Arnold 2017, Baggs 2010, Limburg 2016, Milton 2012, Ne'eman 2010, Prince 2010, Yergeau 2010, 2013, 2017). Autism, therefore, according to such claims, should be accepted, even celebrated.^[5]

While the neurodiversity paradigm and its accompanying discourses are varied and nuanced, several of its generally-accepted principles bear mentioning. First, neurodiversity proponents maintain that autism is an inseparable and integral part of the autistic person. It is in light of this view that many autistic authors express their explicit preference for identity-first language (i.e., autistic person), over person-first language (i.e., person with autism) (e.g. Lawson 2008, Milton & Lyte 2012). Moreover, imaginaries of a potential cure for autism, or of technologies of its prevention, are seen to constitute a form of intolerance and oppression. Another common attitude in neurodiversity discourse is a rejection of functioning labels with regards to autism. Advocates maintain that the binary distinction between high-functioning and low-functioning autism is not only simplistic, but that it may be wholly misleading (e.g. Milton & Lyte 2012, Murray 2009, Savarese & Savarese 2010, Yergeau 2010). ‘Functioning’, in the end, is contingent on societal expectation, access to support services, available assistive technology, and changing levels of comfort. Functioning may therefore not be a property of an individual, but a relational category (e.g. Williams 2006). Importantly, neurodiversity advocates further assert that autistic people ought to be included in all public discussions about the condition, from scientific inquiry, through media representation, to legislation and policy making: as per the central idiom in many disability rights movements, 'nothing about us without us'.

Identity, community, and subjectivity

The idea of autism as a form of alterity lends itself to questions of identity, subjectivity, citizenship, activism, and community, which have indeed stood as the basis of numerous anthropological studies. A major paradigm from which autistic people draw their self-definition is the neuroscientific discourse; for example, in adopting the view that autism implies an atypical wiring of the brain. According to Francisco Ortega (2009: 426), this preference reflects a diffusion of neuroscientific claims that extends beyond the laboratory and into various social domains. This cerebralised self-definition of autistic people may constitute the very basis of popular claims for ‘neurodiversity’ (see also Ortega 2013, Ortega & Choudhury 2011).^[6] Yet alongside the neurodiversity discourse, which values taking pride in one’s difference, there also exists the biomedical discourse, which values sameness, normalcy, and efforts to conform. Nancy Bagatell (2007) has thus pointed out that what best characterises the process of identity construction among autistic people is the active and difficult orchestrating of these mostly opposing voices. In other words, assuming an autistic identity is ultimately an active process driven by personal agency and choice.

Such biology-based discourses on autism might also serve as a powerful source of resistance. In assuming an identity constructed around neuroscience, members of the neurodiversity movement question the notion that impairment is objective or absolute (Brownlow & O’Dell 2013). Activists thus appropriate whatever biological basis autism may have – precisely that which according to a deficit model would be considered the cause of disability – and negotiate its meaning, turning it into a positive. Biological essentialism here serves to claim a natural difference between themselves and the hegemonic majority. Citizenship, the authors claim – neurobiological citizenship, in this case – is reflected by people asserting the freedom to negotiate a governing regime, and alternately reject it, accept it or withdraw from it entirely.^[7]

The distinctive possibilities for sociality supported by digital media have offered people with disabilities new opportunities for self-expression and self-determination. Such collective creations play a role in producing social spaces that are inclusive of the fact of disability, thereby expanding our understanding of what it means for people with disabilities to be human (Ginsburg 2012). Autistic people’s shared experiential backgrounds, along with a shared identity as autistic, are thus conductive of a collective voice (Davidson 2008). It is significant that these processes occur online; a social landscape where the communication difficulties associated with autism become less emphasised. Online media, moreover, has allowed autistic people to communicate freely without ‘betraying their autism’ (Antze 2010: 317) by obliging themselves to make eye-contact, for example, or suppressing their atypical body language; without, that is, pretending to be ‘normal’. Under the mostly discursive, predictable, and asimultaneous conditions of online communication, autism need not be an obstacle to communicating successfully, nor to forming relationships or establishing communities.^[8]

Yet while the role of the internet in affording the emergence of autistic communities should not be downplayed, such community building is not restricted to online spaces. Notable examples of actual spaces designed by autistic adults in order to accommodate the preferences and tendencies of those on the autism spectrum – conducive of what might be called an autistic culture (Dekker 1999, Sinclair 2010) – include Autreat (see Sinclair 2005), and its British counterpart, Autscape.^[9] A fascinating example of one such social spaces is a summer camp for autistic youth dedicated to live-action roleplaying games, which was explored ethnographically by Fein (2015b). A ‘folk healing system’, as she deems it, the camp, with its games and accompanying mythologies, offers a rich assemblage of cultural resources: characters, themes, and narratives. Players draw from these sources to metaphorically conceptualise and express their turbulent experiences. Fein further notes that this sociocultural ecology of the camp – with its predictable structures and relational commitments – allows campers to reformulate the challenges associated with autism, transforming them from sources of estrangement into opportunities for mutual recognition and shared enjoyment.

More insight on subjectivity and citizenship in the context of autism comes from authors who engage with the autism rights movement from a gender perspective. Kristin Bumiller (2008) considers the implications of the attempted normalization of autistic people – which among other things includes attempts to eliminate supposedly ‘wrong’ gender behaviour – and analyses autistic activists’ rejection thereof. She argues that the neurodiversity movement offers a unique contribution to the democratic political system, in illustrating that notions of citizenship need not be based on sameness (as it is sometimes imagined) nor on difference (as notions of diversity in other contexts often imply). This is because both sameness and difference imply a ‘norm’ against which people’s individual value is measured. Instead, autistic people's 'quirky' citizenship is to be based on inclusion, acceptance, and individual roles and contributions to civic life.^[10]

Language and sociality

Autism is characterised by an equivocal relationship with typical, i.e. symbolic and conventionalised, language. For both Dawn Prince (2010), an autistic anthropologist and Amanda Baggs (2010), an autistic self-advocate, conventional language is neither natural nor intuitive but partial and constraining. In their respective works, the authors articulate their preference for unconventional linguistic structures: modes of non-symbolic connection to the world that nevertheless capture its beauty and the richness of worldly experience. In light of these different linguistic styles commonly found among autistic people, they often experience difficulties in their attempts to make sense of social etiquette. And although many autistic people work continuously to uncover the underlying principles of social rules, they frequently remain unsuccessful in putting this knowledge into practice. As a result, they turn to shaping their social environments in an attempt to redefine the terms under which the appropriateness of their actions is evaluated. Failure to abide by etiquette should therefore be taken not as mere lack of success, but at least in part as deliberate action and contemplative craft (Belek 2018).

Elinor Ochs et al. (2004) have also discussed their autistic interlocutors' difficulties pertaining to 'social function'. They note that the skills required to converse successfully with each other exceed knowledge of interpersonal communication, to also involve the 'socio-cultural knowledge' necessary for appropriately inferring indexical signs. Autistic people's reduced ability to make sense of some utterances or events, and to react in a conventionally appropriate manner, is to a large extent due to their difficulty in drawing upon knowledge of social context. Such social misconduct, and how autistic children account for it, is the focus of a study by Karen Sirota (2004), who demonstrates the ways in which parents use various expressions of accountability (such as justifications, apologies, or excuses) when instructing their children on how to navigate breaches of etiquette. Yet seeing as accountability is a highly context-specific practice, its effectiveness as a remedy depends on understanding the particular conditions of its use. In the context of autism and the frequent unpredictability that accompanies it, the success of this strategy is limited (see also Ochs & Solomon 2008).

Some autistic authors articulate their arguably unique connection with animals (e.g. Grandin & Johnson 2009, Prince-Hughes 2004). Interactions with horses, for example, are said to enable various types of social behaviours and "open-up" autistic children to interactions they would otherwise typically avoid (Malcolm et al. 2018). Equine therapy thus facilitates a form of multi-species intersubjectivity, leading the way to novel possibilities for dynamic attunements between autistic and non-autistic people.^[11] Recently, the increasingly popular imaginaries of social robots as appropriate companions for autistic children has also been attended to. This notion is grounded in the persistent view of human sociality – especially where autistic people are concerned – as somehow mechanistic (see also Milton 2014). Yet others (e.g. Richardson 2018) contend that human to human attachment is in fact crucial to happiness and wellbeing. A successful therapeutic relationship depends on mutual trust, compassion, and empathy, and is therefore not replaceable by the ontologically divergent interactions between human and machine.

Body and senses

Various bodily attributions are common in autism: sensory sensitivity; a tendency towards repetitive movement, sometimes referred to as self-stimulating behaviours or ‘stimming’; and an atypical gait or posture, to name just a few examples. Autistic children have been shown in some cases to assume a laborious role when attempting to coordinate their (often atypical) bodily actions with societal expectations (Solomon 2011). Analysing video footage of a 9-year-old autistic girl interacting with classmates in the playground, Ochs (2015) has noted this minimally verbal child's continually alternating bodily responses to the social situations developing around and towards her. This constant awareness of one's own body – as an experiencing subject as well as an object exposed to the gaze of others – is what Ochs refers to as a form of corporeal reflexivity. In a similar engagement with corporal reflexivity in autism, it has been shown that autistic adults work to produce distinctions between bodily experiences of distress that they previously experienced as undistinguishable (Belek 2019a). Through a process of bodily cultivation, autistic adults come to design a specialised vocabulary – which includes such terms as trigger, overload, meltdown and shutdown – through which to attune more precisely and concretely to their atypical somatic sensations.

Autism around the world

Until quite recently, the anthropology of autism has focused primarily on the sociocultural conditions and implications of the category in Anglophone settings. This regional bias can be said to have set the tone for the discipline's engagement with the topic at large, further evidenced by scholars' frequent lack of acknowledgement that such a regional bias does in fact exist. Majia Nadesan (2005), among others, accentuates the crucial role that specific sociocultural, political, and epistemological developments in twentieth century Europe and North America had played in the emergence of autism. These include major shifts in psychiatric paradigms, as well as changing formulations of the category of childhood and the resulting alterations of the perceived goals of early education. ‘Autism’, she thus argues, ‘could not have emerged in the nineteenth century … because within the diagnostic categories of nineteenth century (and earlier) thought, autism was unthinkable’ (2005: 3). Although Nadesan does not press this point, her historical narratives indicate that the statement holds equally true concerning not only the temporal, but also the geographical and geopolitical locations of the category's emergence. However, over the past two generations, autism diagnoses have become increasingly common throughout the world (e.g. Elsabbagh et al. 2012).

Consequently, several anthropological studies have set about to explore the particular enactments of autism in more diverse geographic, cultural, and political contexts.^[12] Ariel Cascio (2015a) is one example, as she analyses the use of the concept of rigidity by Italian professionals involved in providing therapy for autistic children. These practitioners frequently describe their clients as rigid, and consider rigidity a potential pitfall in their own work in autism service provision. By creating this semantic overlap between the experiences of people on the autism spectrum and their own, professionals open up a space of similarity between neurotypicals and autistic people, a rhetorical strategy which allows them to reflect more closely upon their work, while working to bridge the gap between the two groups.

In South Korea, local connotations and interpretations of autism lead mothers to resist thinking about their children as autistic (Grinker & Cho 2013). These South Korean mothers frequently attempt to battle exclusion and mitigate stigma in a society that values conformity, while also having to excuse their children’s difficulties in school in an environment that reveres academic excellence. Owing to their understandable reluctance, under such circumstances, to accept the label of autism, a local lay diagnostic concept has emerged; that of ‘border children’. Inconsistent with Western diagnostic classification, this emerging label has proven powerful in allowing mothers to reconcile their ambivalence to the label of autism with its implications of permanence and certainty, framing the condition instead as uncertain, contingent, and temporary.

This rejection of the label of ‘autism’ has also been described in an American context. Challenging the ethnic bias in the anthropology of autism, Cheryl Mattingly (2017) focuses on a family forced to deal with both race and disability: an African-American mother and her autistic child. Here, racial stereotyping, joined with a narrow view of autism, confines the child's conceivable future possibilities; thus teaching the child, in his mother's view, to internalise the fearful potentiality of his ‘becoming nothing’. Structurally visible threats associated with race and class are thus shown by Mattingly to play a central role in the opportunities presented to an autistic child as they enter adulthood.^[13] In light of this, it is claimed that refusing to accept an autism diagnosis might be the most logical means of protection from the pernicious threat posed by the entwinement of race and disability in certain social settings.

Conclusion

Anthropologists studying autism approach their object of study as they do other forms of human difference. They have employed such common heuristic frameworks as phenomenology, ethnomethodology, interpretivism, and critical theory to explore autistic subjectivities, experiences, bodies, and narratives, as well as the motivations and significations of other actors involved in shaping the condition. Yet one aspect of the phenomenon we call autism seems to call for a specialised interpretive framework: namely, its existence as both a historically contingent social construct, and as a name and category for underlying biological, neurological, and genetic conditions. It is predominantly this tension, never quite resolvable, that has led scholars to characterise autism as an uncertain entity (Hollin 2017b), a disability of context (Prince 2010), a disease and an epidemic of signification (Kaufman 2010, David & Orsini 2013) and an epidemic of discovery (Grinker 2007).^[14] Indeed, Ian Hacking may not have exaggerated when proposing, in reference to autism, that ‘we are participating in a living experiment in concept formation of a sort that does not come more than once in a dozen lifetimes’ (2009b: 506).

The anthropological literature recounted above constitutes a crucial step towards our better understanding of autism and of the people to whom this concept is said to apply. Yet the notion of neurodiversity might suggest that anthropologists should go further. They may want to incorporate their emerging understanding of autism into a broader analytical perspective in which the category of autism is no longer thematically and theoretically isolated. What may be needed is not only an anthropology of autism, but an anthropology with autism. As it was put by Richard Grinker,

We need to focus attention on the anthropological study of a form of difference that has previously been conceived of as lying outside the realm of the social. The concept of "diversity," with all its positive connotations of acceptance and celebration of difference, need not only apply to gender, race, ethnicity, and religion. We can also begin to celebrate a diversity of minds (2010: 177).

Acknowledgements

I thank the entry's editor and reviewers for improving greatly on this text. Especially, I am grateful for their pointing out to me the discipline's bias to studying autism predominantly in Western English-speaking settings.

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——— 2017a. Failing, hacking, passing: autism, entanglement, and the ethics of transformation. BioSocieties 12(4), 611-33.

——— 2017b. Autistic heterogeneity: linking uncertainties and indeterminacies. Science as culture 26(2), 209-31.

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——— & Y. Bilu 2006. Grappling with affliction: autism in the Jewish ultraorthodox community in Israel. Culture, Medicine, and Psychiatry 30(1), 1-27.

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——— 2012. Images and narratives of autism within charity discourses. Disability & Society 27(2), 219-33.

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——— 2017. Authoring autism: on rhetoric and neurological queerness. Durham, N.C.: Duke University Press.

Note on contributor

Ben Belek is a research fellow in social and medical anthropology at the Martin Buber Society of Fellows at the Hebrew University in Jerusalem. His previous project focused on the ontological status of neurological diversity among autistic adults in the UK. In his current project, he explores the shifting values of blood constituents in the Israeli blood economy.

Ben Belek, The Martin Buber Society of Fellows in the Humanities and Social Sciences, Mandel School for Advanced Studies in the Humanities, The Hebrew University of Jerusalem, Mt. Scopus, Jerusalem, Israel 9190501.

[1] Examples of the critical strand of literature include Eyal et al. (2010) Fitzgerald (2013, 2014, 2017), Gillis-Buck & Richardson (2014), Hollin (2014, 2017a), Hollin & Pilnick (2015), Lappé (2014), Nadesan (2005, 2013), Navon & Eyal (2014, 2016), and Silverman (2012). For a review, see Hollin (2016). Other studies aim their critique at popular theories in cognitive neuroscience. These include Hacking (2009), Jack (2011), Krahn & Fenton (2012), McDonagh (2013), Milton (2012), Milton & Lyte (2012), Williams (2004), and Yergeau (2013, 2017).

[2] Grinker (2010: 173) has discussed the benefits of imagining autism as a spectrum, whereby the old image of the nonverbal, mentally underdeveloped, and unaffectionate male child has given way to the understanding that autism constitutes a broad range of strengths and weaknesses, tendencies and sensitivities. However, the use of the spectrum metaphor does have several disadvantages, as noted by Hacking: ‘To the mind of a physicist or a logician … spectra are linear and autism is not. Autism is a many-dimensional manifold of abilities and limitations.’ (2009b: 503)

[3] Other studies focusing on the representation of autism in various media and its impact on understandings of the condition include Davidson (2007), Davidson & Smith (2009), Draaisma (2009), Hacking (2009b, 2009c), Murray (2008), and Waltz (2005, 2012); as well as the studies featured in an edited volume by Osteen (2008).

[4] The relationality inherent in the notion and category of autism, and its opposition to socially contingent understandings of that which is 'normal' has been similarly addressed by Belek (2019b), Bagatell (2007), Eyal et al. (2010), Grinker (2013), Lawson (2008), Milton & Lyte (2012), Molloy & Vasil (2002) and Nadesan (2005), among others.

[5] Studies which explicitly take this stance on autism as their starting point, are occasionally grouped together under the umbrella of "critical autism studies" (CAS) (O'Dell et al. 2016, Davidson & Orsini 2013, Runswick-Cole, Mallett & Timimi 2016, Woods et al. 2018).

[6] For a comparable analysis of autistic subjectivities as representing a ‘neurostructural self’, see Fein (2011). For autism as neuroqueerness, see Yergeau (2017).

[7] Other studies emphasising the active and often creative nature of constructing positive identities in autism include Badone et al. (2016), Bagatell (2010), Brownlow (2010), Davidson & Henderson (2010), and Fein (2015b).

[8] The affordances of digitally mediated environments in the context of autism were also explored by Belek (2013, 2017) Brownlow & O’Dell (2006), Clarke & Van-Amerom (2007), Giles (2013), Pinchevski & Peters (2016), and Ward & Meyer (1999), to name a few.

[9] See www.autscape.org

[10] Other notable studies focusing on gender in the context of autism include Cheslack-Postava & Jordan-Young (2012), Davidson (2007), Davidson & Tamas (2016), Goldman (2013), and Jack (2014).

[11] Solomon (2010, 2012, 2015) has similarly explored the ways sociality in some autistic children is facilitated and realised through social interactions with animals.

[12] Other examples of studies which engage with autism in various geographical contexts include Brezis et al. (2015), and Daley et al.'s (2014) work in New Delhi, India; Sarrett (2015), comparing ethnographic data from Kerala, India and Atlanta, US; Kim (2012) comparing Canada, Nicaragua and Korea; Rios & Andrada (2015) in Brazil; and Bilu & Goodman (1997) Shaked (2005), and Shaked & Bilu (2006) writing on autism in ultraorthodox Jewish communities in Israel. For a review, see Cascio (2015b).

[13] The intertwinement of parenting, autism and ethnicity from a phenomenological perspective has also been addressed by Angell & Solomon (2017), Lawlor & Solomon (2017), and Solomon & Lawlor (2013).

[14] The latter two drawing on Treichler (1987).

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.