The articles in this issue move to lay the groundwork for an anthropology of cognitive disability. They respond to recent calls to examine disability as an axis of human difference that is as fundamental as anthropology’s usual suspects, such as society and culture, race and class, gender and sexuality (Ginsburg and Rapp 2013; Kasnitz and Shuttleworth 2001). These calls ask what might be gained by attention to the lives of people with bodies that depart, at times quite radically, from what is normative in a particular social world. We join this conversation by concentrating not on bodies that diverge from social expectations, but minds – a focus that has, to date, received relatively little systematic attention in disability studies, the anthropology of disability, and anthropology more broadly.
The Social Model of Disability has powerfully shown that biological impairments of bodily capacities do not necessarily lead to disabilities – that is, limitations in people’s abilities to participate fully in their social worlds (e.g. Finkelstein 1988; Swain et al. 1993). We aim to contribute to the comparatively limited amount of work that has been done to demonstrate this insight’s relevance to the mind. All of our articles reckon with cognitive differences such as dementia, autism and brain injury that can be disabling in certain social settings. We do not take these categorizations as neutral descriptors of a fixed reality. Instead, following the Social Model, we demonstrate them to be socially particular ways of imagining and evaluating mental differences that have profound effects on the lives of those who live ‘under the description’ of them, as Emily Martin (2009) puts it (see also Carlson 2009).
In showing this, our articles also draw attention to some particularly thorny questions that the Social Model of Disability, and work on the contingency of classifications of cognitive conditions, often ignores. First, what kind of cross-cultural reality does cognitive difference have? Do specific cognitive differences arise only within particular social imaginaries, or do they have an existence beyond them? Is cognitive difference always created by a classificatory regime and structure, or does it both precede and outlive any specific social circumstance? Second, how problematic is cognitive difference? Is it a neutral biological fact that only becomes disabling and difficult under particular social circumstances, as the Social Model suggests? Or do some forms of cognitive difference, such as profound intellectual disability, limit one’s possibilities for full participation in any social situation? Third, in light of all this, how should we study cognitive difference anthropologically? Can we use existing models of social and cultural construction to capture the experiences of those living under the description of cognitive difference and disability? Or does it require new anthropological tools?
Our articles investigate these questions in relation to a series of disparate cognitive differences – from severe intellectual disability (or learning disability as it is sometimes known) to advanced dementia, and from brain injury to autism – in different ethnographic situations. In this introduction, we group these various forms of cognitive difference together under the single, broad heading of ‘cognitive disability’ (see Kittay and Carlson 2010). We do so not to naturalize any particular way of classifying mental variation, or to ratify the disabling consequences that may result from living under such descriptions. Instead, we hold these various differences close to each other through the category of cognitive disability in order to explore what might change if we treated cognitive difference – its various classifications, and the profound and often disabling real-life consequences of it – in comparative perspective. In short, we seek to provide a way to investigate and to debate the questions: does cognitive difference precede or exceed social and cultural construction? And is it always, in some respect, problematic?
Exploring these possibilities, we argue, directs our attention towards significant analytical difficulties. What does it mean to take cognitive disability seriously? How can we analyse the way in which different societies shape this form of difference? We contend that there are important challenges to understanding cognitive disability anthropologically because many of our foundational methodological and ethical assumptions militate against it. Taking into account variations in mental capacity runs contrary to our disciplinary instinct to regard all humans as sharing the same basic cognitive abilities. It also disrupts our models of how cultural construction operates, subjects are produced, and agents interact. In the case of cognitive disability, the ‘difference that disability makes’ (Michalko 2002) challenges how we understand difference, both between and within societies.
We take the extent of the challenges we face in approaching this topic as evidence of its anthropological import and promise. Our articles demonstrate that when these issues are faced head on, research on cognitive disability can shed new light on issues as diverse as politics, subjectivity, care, emotions and ethics. All this gestures towards the possibility of a vibrant anthropological conversation around the topic.
In this respect, our approach takes inspiration from efforts to look at the emergent forms of value (Friedner 2015), kinship (Rapp and Ginsburg 2001), sociality (Solomon 2012) and politics (Ralph 2012) that arise around disability. Building on this work, our contention is that when we attend to cognitive disability as a distinct class of phenomena, it emerges as a compelling vector of human difference. We suggest that a more robust engagement with it will enrich not simply the anthropology of disability, but also the discipline as a whole. In this introduction, we expand on this thought as we spell out at greater length some of the challenges to developing this conversation, attempt to face them directly, and delineate some of the particular benefits that follow from doing so.
Beyond the ‘psychic unity of mankind’
Part of the reason that cognitive variation has been neglected is because its existence threatens some of anthropology’s defining assumptions. A tenet central to the development of anthropology in Britain, Germany and the United States was what Adolf Bastian named the ‘psychic unity of mankind’. Bastian meant that people everywhere share a set of ‘elementary ideas’, which are then differently elaborated and realized in culturally and historically specific ‘folk ideas’. Bastian’s claim presupposed a more general assumption – namely, that a baseline set of cognitive capacities enables people to think in culturally variable ways (see Koepping 1983).
This appeal to underlying shared features of the human mind migrated into American anthropology through Franz Boas (Koepping 1983; Lowie 1937: 30–38), allowing the Boasians to intervene in contemporary debates about race. They argued that differences in the ways in which people lived (and reasoned, exchanged, spoke and interacted) were a function of culture, not race or a racialized hierarchy of intelligence and human capacity (Baker 2010). But the idea of shared cognitive faculties unifying the human animal across time and space was also the basis for anthropological theory-making detached from political critique. Arriving into British anthropology via E. B. Tylor, it was a tenet shared both by evolutionists attempting to uncover the laws of the development of society, and by particularists who rejected such evolutionary accounts (Evans-Pritchard 1965; Tylor 1994).
This view has dominated the discipline ever since, leading us to treat divergences from Euro-American thought not as deficits but as intelligent reflections within alternative social constructions (Evans-Pritchard 1976). By the time Clifford Geertz was writing in 1973, he contended that it would be hard to come up with the name of one ‘reputable anthropologist’ who thought anything other than that ‘there are no essential differences in the fundamental nature of the thought process among the various living races’ (Geertz 1973: 62). In contemporary anthropology, this idea is no longer a point of contention but rather ‘an article of faith’ (Shore 2000: 91; see also Larsen and King forthcoming).
But our shared commitment to this doctrine has problematic consequences when it comes to cognitive disability. If we maintain that all cultures are made by humans who have roughly the same mental capacities, then people who appear to lack such abilities would seem to be, at best, at the margins of culture. Anyone seen to have a significant impairment of the cognitive equipment that enables the rest of us to engage in society becomes hard to study anthropologically. Committed to the doctrine of the psychic unity of mankind, and to models of cultural construction that rely heavily on the mental, it is quite simply difficult to get an anthropological grip on cognitive disability, or for it to rise to the analytic surface.
The result has been that mental difference is often overlooked in anthropological works. And this is true even for an emergent anthropology of disability, where the focus of important work has been on people with mobility disabilities (Frank 2000; Kohrman 2005; Phillips 2010; Whyte and Muyinda 2007), parents and other caregivers of children with disabilities (Landsman 2009; Mattingly 2014; Rapp 1999; Rapp and Ginsburg 2001, 2011) and people with sensory conditions like blindness and deafness (Friedner 2015; Groce 1985; Nakamura 2006). Often the disabled subjects in these important works possess socially normative capacities to speak and think, and many are highly articulate and agentive.
We seek to overcome this neglect. In trying to do so we could, of course, draw inspiration from a number of broader anthropological conversations, including psychological anthropology, Actor Network Theory, and discussions of materiality, affect or embodiment. But there are also a variety of conversations that both reckon more directly with the significant cognitive differences we seek to get at here, and simultaneously challenge assumptions about the ‘psychic unity of mankind’ just as we aim to do. These discussions range from the now-burgeoning literatures on autism (on which more below) and dementia (see Driessen, this issue; Chatterji 1998; Cohen 1998; Kontos and Martin 2013; McLean 2015), to established conversations about mental illness and psychiatric disability (Das 2015; Desjarlais 1997; Luhrmann and Marrow 2016; Nakamura 2013; Scheper-Hughes 2001).
Finally, and as Ginsburg and Rapp (2013: 55–56, see also this issue) suggest, a spate of early literature on intellectual disability was central to laying the groundwork for the anthropology of disability as a larger project. In the late 1960s, anthropologist Robert Edgerton inaugurated a direct engagement with the lives of people who had what was then called ‘mental retardation’ (Edgerton 1967). The ethnography emphasized the agentive capacities of ‘mildly retarded’ adults as they left homes and other institutions. Edgerton argued that such individuals attempted to avoid stigma and ‘pass’ as normal by developing a ‘cloak of competence’ – that is, a cluster of strategies that masked their disabilities with varying degrees of success.
Biographical case studies were at the heart of Edgerton’s ethnography, and this spurred an important tradition of writing life histories of people with cognitive disability in North America. Again, the emphasis was on ‘competence’. As L. L. Langness and Harold Levine (1986) write in the conclusion to their collection of case studies of people with ‘mild mental retardation’, close ethnographic attention to such individuals brings into view their ‘remarkable independence’ and ‘resourcefulness’. A central corollary of this effort was the argument that the ‘incompetence’ of the cognitively disabled is primarily social, not natural. Langness and Levine contended that people with cognitive disabilities were ‘socialised for incompetence’ insofar as they were isolated and segregated, leading to profound gaps in basic social and cultural knowledge (1986: 194–197).1
The anthropology of ‘mild mental retardation’ has largely dropped out of view today. But along with the anthropology of autism, dementia and mental illness, this literature constitutes an important antecedent to the anthropology of cognitive disability that we hope to lay the groundwork for in this special issue. By emphasizing the role of the social in limiting the lives of people with cognitive disabilities, Edgerton and others were raising a significant question and challenge that remains with us. The issue is larger than cognitive difference, and it was presented perhaps most succinctly by Ruth Benedict long ago: ‘In how far can we regard inability to function socially as diagnostic of abnormality, or in how far is it necessary to regard this as a function of the culture?’ (Benedict 1934: 60). To the extent that socialization limits the lives of the ‘mentally retarded’ in North American settings, do things turn out differently for people with cognitive disabilities in other cultural contexts?2
Benedict’s question anticipated what came to be a central move of disability scholarship and activism. Participating in a more general rise of the idea of social construction, disability activists and scholars (often the lines are deliberately blurred) articulated what has come to be known as the Social Model of Disability. This line of argument contends that while impairments may indeed have a ‘real’ biological or physical basis, it is ultimately society itself that ‘disables’ people by preventing them from becoming producers, consumers and citizens in control of their own lives (Barton 1989; Oliver 2009; Swain et al. 1993). By drawing on the ‘autonomy and conscious voice of the disabled subject’ (Berger 2014: 174), the Social Model argues that there is nothing within the body of someone with an impairment that should prevent them from becoming an independent agent.
Taking the assumptions behind the Social Model to their logical conclusion would lead to the claim that cognitive disability is a ‘culture-bound syndrome’ and, more specifically, a product of Euro-American society stemming especially from capitalist expectations for productivity and educational achievement. Indeed, mid-twentieth-century social scientists made claims that verged on such a strong claim, positing that in other cultures and in ‘pre-modern’ Europe people with cognitive impairments led relatively normal lives (e.g. Dexter 1962; Ginzberg 1965). Perhaps, then, people with intellectual disabilities do not attain full social participation only because industrialized Western society places such heavy constraints upon them.
Edgerton (1970) himself weighed in, however, cautioning against armchair speculation and pointing to the sheer paucity of empirical data on this question. In an effort that can only be described as heroic, he culled massive amounts of ethnographic research, little of which was explicitly about cognitive disability, and found that there was no straightforward answer; attitudes towards cognitive disabilities in non-Western societies ranged quite widely, from religious veneration to pronounced hostility. Further, Edgerton found no clear correlation between the actual treatment of people with cognitive impairments and socioeconomic circumstances (1970: 540). Instead, he tentatively concluded that what mattered most was a grab-bag of social factors, including culturally variable expectations about marriage, social competence, religion and stigma.
Edgerton’s cautious conclusions do not mean we should ignore the ways in which the globalization of Western economic, political and educational practices can make people with cognitive disabilities more dependent and constrained than they might have been in previous generations (Livingston 2006; Whyte 1999). But they caution us to avoid jumping to general conclusions on the basis of romantic speculation about idyllic societies where people with cognitive impairments are not truly ‘disabled’.
Here Edgerton anticipates scholars of disability who have criticized the Social Model on precisely this front, arguing that an exclusive emphasis on the social construction of agency threatens to occlude the material limitations, experiences of pain, dependency and difficulty that come from particular physical and cognitive limitations (Kafer 2013; Linton 1998; Shakespeare 2013a). And it is perhaps because of its celebratory emphasis on individual agency that ‘disability scholarship has’, as Mark Osteen argues, ‘ignored cognitive, intellectual, or neurological disabilities, thereby excluding the intellectually disabled just as mainstream society has done’ (Osteen 2007: 2). It is simply hard to make cognitive disability fit into the picture of social construction and independent agency that the Social Model works with (Berubé 2010).
By attempting to incorporate the lives, actions and interactions of people with cognitive disabilities in our anthropological descriptions, we are forced to consider how we might envision the making of collective life without assuming the hoary idea of the ‘psychic unity of mankind’, and how we might understand disability without taking the Social Model for granted. This in turn leads to a set of challenging questions. What if cognitive impairment affects the very mental mechanisms through which we engage in society in the first place? Could it be that cognitive impairments shape not just the role that people play in society, but also the extent to which they shape and are shaped by social forces altogether? Attending to people with cognitive disabilities raises the possibility that subjects might have not just different locations within social life, but also different kinds of relationships to the social altogether (see also Friedner, this issue). Might, for some humans, social life operate according to mechanisms quite different from those we have commonly imagined?
In short, we argue that cognitive disability poses a challenge to a range of anthropological assumptions. And this suggests that studying it can make a difference to the way anthropology studies difference altogether. But how? What will it take to get to grips with the realities of cognitive variation on the ground? Away from the safe ground of the psychic unity of mankind and the sure-footedness of the social construction of disability, what new analytical models will we need to comprehend cognitive variation ethnographically? In short, what difference does cognitive disability make for anthropological theory-making and for the social worlds we study? We turn now to investigate these questions by reviewing recent research on autism, one of the most well-researched areas of cognitive difference. We explore what this work might have to say to one recent anthropological attempt to understand difference – the so-called ontological turn. We argue that this movement, and thus anthropological thought about difference more widely, might be both enriched and troubled by reckoning ethnographically with the possibility of cognitive difference within societies.
Autism and ontological difference
Influential writings associated with the ontological turn range from programmatic statements (Descola 2013; Ingold 2011; Povinelli 2001; Viveiros de Castro 2013) to ethnographic examinations of phenomena like Cuban divination (Holbraad 2012), shamanism and animism (Kohn 2013; Pedersen 2011; Willerslev 2007), and fraught relations between states and indigenous peoples (Blaser 2009; de la Cadena 2010; Nadasdy 2007). These writings call on anthropologists to reckon with profound forms of human difference, which they describe as ontological in nature. The aim is to challenge the anthropological presumption that, underneath all of their different socially imagined worlds, humans all inhabit the same reality.
Although discussions of an ‘ontological turn’ suggest some unity, exactly what is meant by ontology in such conversations is something of a moving target. Across the differences, however, ontologists argue that societies do not create differences on top of a biological baseline. Instead, they generate what, in a self-styled manifesto for this development, Martin Holbraad, Morten Pedersen and Eduardo Viveiros de Castro (2014) call multiple ‘forms of existence enacted in concrete practices’. Offering one of the strongest versions of the ontological argument, these authors argue that there exists a form of difference beyond the anthropological concern with different societies in a shared world: different people inhabit different worlds altogether. Just as feminist anthropologists problematized the distinction between natural sex and culturally constructed gender (e.g. MacCormack and Strathern 2001), so ontologists aim to disrupt the naturalistic assumption that underneath cultural constructions lies a shared ‘humanity’ that is then constructed. The differences between societies go deeper – that is, all the way down to the presumed cognitive baseline.
Recent literature on autism has explored, in unique depth, the extent to which the condition might create potent forms of difference. So we want to ask: could autism possibly make for an ‘ontological’ difference?3 Can we think of this form of cognitive variation as one of ‘the multiplicity of forms of existence enacted in concrete practices’ that ontologists seek to study? If so, how might that reshape the ontologists’ project of deepening the way we think about difference altogether? And what might it contribute to the anthropology of cognitive disability we seek to introduce here?4
Historian of science Chloe Silverman (2008) titled a review of research on autism ‘Fieldwork on Another Planet’. Silver was alluding to a famous remark by prominent autism spokesperson and animal science scholar Temple Grandin, who described her difficulty in managing social life pithily: ‘Most of the time, I feel like an anthropologist on Mars’ (Grandin, qtd. in Sacks 1996: 259). Grandin was not only describing her own difficulties in managing everyday interactions from a position of radical alterity. She was also invoking some of the possibilities that come with the differences of autism – in this case, an anthropological analysis of the lives and worlds of those whom Erving Goffman (1986) famously called ‘normals’.
Grandin claims that being autistic made for a profoundly different way of being in the world, a kind of radical alterity. Could it be, in Viveiros de Castro et al.’s sense, an ontological difference? This possibility has not yet been raised by scholars either of disability or ontology. The former tend to push off any suggestion that impairment ever really disrupts the shared humanity that lies beneath stigmatized bodies, focusing instead on how people are oppressed by social forces. Ontologists, by contrast, tend to minimize differences within societies as they focus on maximizing the differences between them. But pioneering recent work on autism has produced ethnography that offers us the chance to investigate this possibility in concrete detail.
Autism is widely regarded by people who have the diagnosis, their kin, allies and medical, psychological and educational authorities as a neurological and developmental condition (or cluster of conditions) affecting communication and social interaction. Recent figures from the US Centres for Disease Control suggest that roughly one in sixty-eight children in the United States has autism.5 In contemporary Europe and North America, there is considerable disagreement over whether autism is a disordered or a valuable form of difference. On the one hand, many parents, medical experts, therapists and teachers regard the differences that define autism as ‘deficits’. On the other hand, growing numbers of people with autism and their allies readily accept the details of this diagnostic profile but invert its valuation, embracing autistic traits as instances of ‘neurodiversity’.
Another description of an alternative cognitive style is presented in Mel Baggs’s widely viewed YouTube video, In My Language, which has also received important anthropological analysis from Antze (2010) and Ginsburg (2012):
I think in pictures. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand…(Grandin 2006: 1)
My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment. Reacting physically to all parts of my surroundings. In this part of the video [scene of Baggs’s hand under a running faucet] the water doesn’t symbolize anything. I am just interacting with the water as the water interacts with me. Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as ‘being in a world of my own’. Whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am ‘opening up to true interaction with the world’. They judge my existence, awareness and personhood on which of a tiny and limited part of the world I appear to be reacting to. The way that I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all but it is a way of thinking in its own right.6
What Grandin’s and Baggs’s remarks share is recourse to likening their cognitive modes to dominant forms, while simultaneously presuming profound differences between them. Grandin compares her visual cognition to language-based processes, while Baggs describes his intensive experiential engagement as a language. In this respect, we see a case in which people with disabilities, as minoritized subjects, render themselves legible in dominant terms. Elizabeth Povinelli (2001) analyses this phenomenon as the process by which members of ‘radical worlds’ are tasked with the ‘burden for social commensuration’ in liberal nation-states (see also Redley and Weinberg 2007). We also see in both Grandin’s and Baggs’s cases a more general tension that Paul Antze (2010) has noted in the neurodiversity rhetoric associated with autism activism, which is grounded in competing tendencies to emphasize sameness and difference or, more precisely, liberal universality and radical alterity.
While there is no question here of who bears the ‘burden for social commensuration’, Grandin’s and Baggs’s efforts to lay claims to the dominant terms of personhood (cognition, language, rationality) also challenge the standards of those who are ‘neurotypical’. Grandin’s and Baggs’s testimonies are not simply examples of straightforward domestication. Rather, they are forms of narrative and visual activism (Garland-Thomson 2009) made possible by varied media forms (i.e. a memoir and a YouTube video) that ‘enable people with disabilities to engage in a first-person discussion of their world and experiences’ (Ginsburg 2012: 102). Might these articulations of difference qualify as ontological in Viveiros de Castro’s sense? If we, as he does, commit to the language of ‘ontological self-determination’, it seems difficult to resist this possibility.
Reckoning fully with the lives of people like Grandin and Baggs could considerably enrich how the ontologists conceive of ‘difference’. A common claim of ontological anthropology is that it moves beyond anthropology’s ‘culturalist’ focus on issues of epistemology, representation, worldview and belief (Viveiros de Castro 2004, 2011). Yet much ontological work renders difference a matter of assumptions, premises or ideas about existence. For instance, in most of his writings, Viveiros de Castro works to portray Amerindian cosmologies as sophisticated intellectual systems – as ‘anthropologies’ (Viveiros de Castro 2004) or the occasion of ‘philosophical activity’ (Viveiros de Castro 2003) every bit as intricate and worthy of engagement as anything produced in Europe (see also Descola 2013; Nadasdy, 2007; Pedersen 2011: 35n19).
Such a conception of difference leaves out the possibility of cognitive variations within populations, and more specifically the particular kind of difference that Baggs and Grandin call us to focus on. The alternative forms of cognition and perception these autistic authors evoke constitute differences not simply at the level of what they think – their assumptions or ideas – but also how they think and perceive, or the basic conditions of their being in the world. For those committed to a language of ontology, this is surely an ontological difference – but one that ontologists have so far failed to reckon with.
If Grandin and Baggs do not think, use language and interact with others in the same way that the cognitively typical subjects of anthropological analysis do, then in what sense are they social actors? Of what ‘worlds’ are they members, and on what basis? If Grandin lived in the Amazon, for instance, would she inhabit an Amerindian cosmology or, in whatever context she resides, will she always live in ‘her own world’? Research on autism thus forces us to ask new questions about how humans can differ from one another, while inviting us to develop new analytical tools to capture the complexity of these cases. For this reason, it is apt that research on autism has been described as ‘an ultimate, formidable frontier for the field of anthropology’ (Ochs and Solomon 2008).
Over the past fifteen years, anthropological attention to autism has increased exponentially and has, to its great credit, attempted to tackle these issues head on. Autism is often understood to consist of fundamental impairments in a person’s abilities to communicate and socialize. But a series of ethnographic studies, associated with the UCLA’s Ethnography of Autism project, has sought to map the contours of a distinctive ‘autistic sociality’ (Ochs and Solomon 2010) in the lives of children diagnosed with the condition. This work attempts to think about autism outside the individualist and pathologizing frames of biomedical and psychological knowledge by exploring how these individuals actually interact in particular relationships and social contexts (Kremer-Sadlik 2004; Ochs et al. 2004; Sirota 2004; Sterponi 2004).
Other ethnographic research has challenged the idea that autism is defined by social deficiency through an investigation into the vibrant online communities that flourish by making use of digital technologies and social media like message boards, chats rooms, blogs and comments on YouTube videos like Mel Baggs’s. In a manner not unlike Baggs’s visual activism, the simple existence of these online worlds calls attention to the tacit assumptions underwriting biomedical construals of autism, which mistake limitations in widespread forms of communication and interaction for limitations in communication and interaction altogether (Antze 2010; Ginsburg 2012). Actual research shows that, online and thus outside of ‘the constraints of typical ways of perceiving and interacting’, many people with the diagnosis are perfectly able to engage in discourse and interaction (Bagatell 2010).
This research has already laid many of the foundation blocks of an anthropology of cognitive disability. It constitutes an ever-growing body of ethnographic data through which to reflect on how we should study human difference. Our articles contribute to this project by describing how a wide variety of cognitive disabilities generate alternative ways of inhabiting the world, in that people living with and through these conditions depart in profound ways from dominant forms of personhood, kinship and sociality. Anna Zogas demonstrates how even the possibility of mild brain injury profoundly disrupts US army veterans’ self-experience, and creates a sense that they are distanced from shared social reality. Tyler Zoanni’s and Patrick McKearney’s articles show that people with cognitive disabilities in Uganda and Britain, respectively, are regularly parsed as being highly unusual subjects who think, interact and engage differently from others.
Zoanni’s article, in particular, draws attention to the phenomenological manifestation of these differences in the lives of several individuals. Annelieke Driessen contributes a distinctive voice to the explosion of recent anthropological writing on dementia by attending in sensitive ethnographic detail to the bodily ways in which people with dementia in a care home in the Netherlands relate to others.
The anthropology of autism offers us a direct, articulate and compelling way into the central questions that our evidence of cognitive difference raises. How are we to understand the ‘social’ when people engage in it with widely divergent cognitive frameworks? What language do we need to describe the subjectivity and agency of people who engage in culture so differently? What tools do we need to analyse social interaction conducted in the absence of abilities normally regarded as crucial to it? In what remains, we reflect on these questions in more depth by exploring some routes forward in anthropological reflection on agency and ethics.
Selfhood and ethics
Perhaps the reason that autism has attracted more anthropological attention than other forms of cognitive variation is because it can so easily be seen as difference rather than disability, and thus assimilated so easily into frameworks of identity politics. Autistic people have recently started to form novel social worlds in particularly active, vibrant and highly articulate ways. There is often a very neat fit between the neurodiversity movement’s attempts to find community and interaction, where previously there was only the presumption of individual limitation, and anthropologists’ efforts to do the same. Autistic self-advocates and anthropologists of autism alike follow constructionist arguments against racism and sexism, by resisting biomedicalizing and stigmatizing framings of the condition. Instead of focusing on individual pathology, they argue that autism is a different, not a worse or more limited, way of being human.
This is not a problem in principle, but in practice this tight fit between our informants’ ethical and political projects and our own descriptive and analytic endeavours can produce blind spots. Committing to describing autism exclusively as difference or diversity risks prioritizing the self-presentations of high-functioning self-advocates. It thus foregrounds the possibilities opened up by the internet to these able social actors, over the less readily legible relationships that so-called ‘lower-functioning’ autistic people often have to their social worlds. An emphasis on autism as positive difference thus draws our attention away from the possibility that the condition might also generate limitations, dilemmas and frustrations.
To understand the implications of this, it is worth turning to established critiques of the Social Model of Disability. The Social Model’s commitment to describing disability as a constraint socially imposed upon neutral differences has lent it a ‘utopian’ tendency from the off (Shakespeare 2013b). It has often ignored intractable limitations, and so risked explaining disability away as merely the product of faulty imaginations of the human, and drawn our attention away from the all too real ‘predicaments’ that impairment can generate (Shakespeare 2013b; see also French 1993; Siebers 2007, 2008). This has contributed to the tendency of disability studies to ignore people with more severe disabilities that render them less articulate and politically active than the typical disability activist (Berubé 2010; Kulick and Rydström 2015). In particular, it means that the Social Model of Disability works poorly when applied to cognitive differences (Carlson 2001; Goodley 2001; Kittay 1999). While it is easy to see how physical and sensory disabilities like deafness can be evaluated differently or even ameliorated by social conditions (e.g. Finkelstein 1988; Groce 1985), it is harder to see how some forms of profound cognitive disability could be transformed by social conditions to the same extent (Berubé 2010).
We follow these critiques of the Social Model in aiming to be open to the possibility that cognitive differences can generate very real constraints that cannot always be overcome by social processes. Taking this line allows us to ask a more difficult, sensitive and interesting question of cognitive difference: do cognitive conditions represent an alternative way of engaging in society, or can they also impair people’s ability to so engage altogether? Do cognitive differences always make people into subjects who are simply different – that is, who can have personhood and agency through new forms of sociality? Or can certain forms and degrees of cognitive difference insert barriers into the process of becoming a subject and a social self in the first place?
The articles in this issue do not resolve these tensions between possibility and limitation at an abstract and a priori level, as the Social Model does. Instead, they take them as matters of ethnographic investigation, provocations for empirical research into the complex ways in which cognitively impaired selves manifest in – that is, shape and are shaped by – real social conditions. Driessen and McKearney, for instance, probe these themes by showing how carers of these individuals reflect on the relationship between constraint and possibility as a crucial practical and ethical concern.
Driessen writes that dementia appears to generate an important limitation: her informants with dementia seldom engaged in generating pleasure for themselves, and this seeming impotence is often taken as a sign that they are incapable of feeling anything but suffering. But she shows how carers can create surprising chances for enjoyment by working both around and with these cognitive constraints in order to solicit less cognitive and more bodily forms of appreciation. Does this practice of care mean that people with dementia can always become subjects of pleasure in the right social relations? Or does their radical dependence on carers to encourage them into this subject position suggest that the roles open to them, even within the best care possible, are very limited? Does a focus on embodied pleasure provide a more expansive new way for carers and those with dementia to relate, or can such interactive moments only ever be fleeting?
McKearney’s article investigates the workings of L’Arche, a Christian organization in the UK that offers care for people with cognitive disabilities. He describes how carers in this organization learn to pay explicit attention to the limitations of those they support. But he demonstrates that this training does not result in a view of those with disabilities as passive objects of care. Instead, reflective inability in L’Arche is seen to be the precondition of a different way of actively inhabiting the world. By training carers to recognize and interact with people with intellectual disabilities as unusual agents, L’Arche creates alternative caring relationships and communal forms in which people with cognitive disabilities, precisely because they are impaired, are imagined to be distinct and charismatic selves that have dramatic and profound effects on the cognitively able.
Zogas’s and Zoanni’s articles focus on these issues from the perspective of the cognitively disabled themselves. Zogas demonstrates the complex relationships formed between clinicians and veterans as they reflect on the potential limitations brain injury places on subject formation. In a surprising reversal of roles, she shows that, whereas clinicians emphasize the plasticity of the mind and its ability to overcome obstacles, veterans tend to see their brains as inherently compromised after receiving concussions in combat. Are veterans forever prevented from becoming functional citizens by their brain injuries, or have they simply not engaged in the right forms of pedagogy yet? Does a brain injury necessitate new forms of self-cultivation specifically tailored to their new cognitive capacities, or can veterans be turned into new civilian selves in the same way they were once turned into military ones? Are veterans ripe for being shaped by medical regimes of governmentality, or do their impairments throw an unanticipated spanner in the work of biopolitics?
Zoanni looks at the lives of people with cognitive disabilities in two religious care organizations in Uganda, individuals who are quite literally described as failed people in these contexts. He argues that these failures are also new beginnings in the course of personhood, sites at which these individuals become distinctive presences. People turn transgressions of social norms into signs of their distinctive ‘signature’, as he puts it. But these signatures do not authorize endless possibility. Still, cognitive impairment is less a barrier to the production of personhood than the locus of the creation of non-normative persons.
Insofar as they take up the ways in which people with cognitive disabilities do not readily conform to dominant expectations about being a self or subject, these articles both contribute to and challenge recent anthropological attempts to think about the process of ethical subject formation. The explosion, over the past fifteen years, of anthropological work on ethics has been driven by a desire to rethink what it means to be an agent altogether. Unsatisfied with oppositions between social structure and a generic notion of ‘agency’, many of these studies follow Foucault (e.g. 1992) in regarding subjects as being produced by and through socially specific practices and structures (Faubion 2011; Laidlaw 2013; Mahmood 2005; see also Mattingly 2013: 304). Studies have demonstrated how social processes are complexly involved in shaping not just the society people live in, but also their very selves (e.g. Pandian 2009). In doing so, however, they aim to avoid reducing the ‘self’ to merely the after-effect of social structures; instead they seek to show how different ‘historically and culturally specific disciplines’ produce different ways of reflecting (Mahmood 2005: 29; 2003: 838).
The articles in this issue take up this work implicitly and explicitly as they explore how subjects are constituted by both society’s effects on them, and their own distinctive forms of self-work. They use this literature to bring a more complex and nuanced model of the subject to anthropological discussions of disability and autism in the hope of inspiring other work on cognitive impairment that does the same. They demonstrate what it might look like to take people with significant cognitive variations seriously as people who work upon themselves ethically (Zoanni, Zogas), and whose very selves are acted upon, valued and shaped by others (McKearney, Driessen). In other words, they both draw upon and contribute to the re-envisioning of the agent that the anthropology of ethics has pioneered.
In doing so, these articles also speak back to these debates about subjectivity, challenging some of its very foundations. Cognitively able adults are open to being formed by different social settings such that they can be made, and make themselves, into quite different sorts of ethical subjects depending on context. As a result of focusing on these individuals, the anthropology of ethics has so far emphasized the various forms that reflection takes when produced under different self-fashioning regimes. This line of research has proved immensely fruitful in the brief period it has been pursued. But the articles in this special issue invite us also to see the limitations of this approach, and to attend to what lies beyond its bounds.
In cases of cognitive disability, the assumed basis of ethical cultivation – a deliberative, reasoning and reflective subject – is not always so evident. Instead, the particular ways in which people with particular cognitive conditions relate to the world often provoke debate about whether they are indeed moral agents at all (McKearney, this issue; see also Kittay and Carlson 2010). In these instances, suppositions about the universality of subjectivity frequently become unstable or unclear (Antze 2010; Faubion, this issue). Researching people with such conditions thus requires an engagement with the possibility that it might not simply be the form of people’s cognitive activity and agency that varies, but also the extent of it. That is, such research requires us to attend to the question not only of how people reflect differently in different places, but also how they can develop, maintain or lose their varying ability to reflect in the first place.
Zogas’s article, for instance, draws attention to how veterans are encouraged to reform their cognitive impairments by, as she nicely puts it, ‘thinking about thinking’. Is this a paradoxical endeavour? Does our capacity for reflection rely on being cognitively agile already? Or do institutions, pedagogues, emotions and care play a more crucial role than we have given them so far? She draws our attention to the fact that an anthropology of cognitive disability both requires and enables an investigation into what kinds of social practices produce or inhibit our subjectivity in the first place (Faubion 2001a, 2001b, 2011). It invites us to understand more about how ‘the capacities of self-description and evaluation … emerge and develop … through social interaction’ in the first place (Laidlaw 2017: 181).
Research on cognitive disability therefore also demands that we focus on what lies beyond reflection, and enables us to do so. As McKearney argues in his article, understanding the ethical significance of people with intellectual disabilities in different social settings requires developing new models of agency. This might involve an increased focus on embodied interaction (Das 2012, 2014), exemplary figures that stand aside from social life (Robbins 2017), or a focus on the charismatic and the divine (Faubion 2011; Mittermaier 2011). In exploring these challenging issues, the articles thus invite us to contemplate the possibility of forms of ethical life grounded in human capacities beyond reason – that is, what other forms ethics might take, or whether there might indeed be forms of social life that are what Faubion (2014) calls ‘anethical’.
How does Driessen’s demonstration of the appearance of bodily pleasure among people with dementia reshape our understanding of the role of interactional emotions and embodied conditions in crafting selves? How does Zoanni’s evocation of the relational life-worlds of profoundly impaired subjects affect how we think about the possibilities of moral interaction in the face of disability? How does McKearney’s demonstration of the worth, in certain social settings, of being unable to cognize rationally affect our understandings of agency and value more broadly? Grappling with cognitive impairment forces us to ask: what kind of agent should be at the centre of our anthropological analysis, if any?
This introduction draws attention to the paucity of our anthropological understanding of cognitive disability, and both the immediate and the potential gains of reckoning more robustly with its often-disabling consequences. Notable contemporary developments in the study of mental illness, dementia and autism aside, anthropology is ill-equipped to describe the social lives of those with cognitive conditions. The challenge to overcoming this situation is considerable. Getting to grips with cognitive difference requires grappling with some of our most deeply held suppositions about how social life works, what defines the human, and how we should engage in anthropological research and analysis.
But the potential benefits of doing so are immense. In this introduction, we have tried to draw attention to just some of these by showing how taking cognitive difference seriously requires and enables us to develop more sophisticated portraits of cultural construction, interactive engagement with the world, the production of subjectivity and the nature of social difference itself. Other work on dementia, autism, intellectual disability and mental illness has brought attention to many more gains besides, as do each of the articles in this issue. We expect future work on cognitive disability only to compound this effect further.
Our contention is that, if anthropology is the study of human difference, then it should give significantly more room to this kind of difference. Doing so is difficult and may raise uncomfortable questions. But, in doing so, this line of thinking promises to open up new vistas that have been foreclosed by our reliance on a range of assumptions, ranging from the ‘psychic unity of mankind’ and the constructionist underpinnings of the Social Model of disability, to the terms of more recent debates about ontology and ethics. If we can find ways to face our ethical concerns and methodological quandaries about how to take cognitive disability into account sensitively and sensibly, then much open promising terrain lies ahead of us.
We are deeply grateful to the authors who have made this special issue possible with their contributions: Anna Zogas, Annelieke Driessen, Faye Ginsburg, James Faubion, Michele Friedner and Rayna Rapp. And we are thankful, too, to James Laidlaw and Joel Robbins for their support as editors and for their feedback on this article specifically.
Anthropologists have paid far more attention to mental health on this front. See Luhrmann and Marrow (2016) for a compelling recent discussion.
Our approach here finds an ally and fellow-traveller in the recent work of Cheryl Mattingly (2017), which we encountered while finalizing this article. Mattingly draws on traditions of phenomenological inquiry in conversation with fieldwork among African American families to likewise argue for approaching autism as a form of ontological difference. Mattingly offers the vivid case of a young boy with autism to make this point, and her research promises to offer a robust ethnographic demonstration of the pay-offs of putting autism and cognitive disability more generally into conversations about ontology.
In a recent book, Holbraad and Pedersen (2017) have walked back from some of their initial formulations and offer a rather more modest, ‘methodological’ version of ontologically oriented anthropology. But we use the earlier, and stronger, version of the project to show that even there attention to cognitive disability offers significant challenges. And, for the purpose of focus, we also leave to one side some other anthropological definitions of ontology, such as Ingold’s (2011) phenomenological approach and Mol’s (2003) Science and Technology Studies-based concern with ‘enactment’, to say nothing of the philosophical inspirations for all of these conversations.
For the press release announcing this figure and the related report, see http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html.
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