Mentally Fit: Negotiating the Boundaries of Cognitive Disability

ABSTRACT

Why do some people’s minds seem conspicuous, disabled, and ill-fitting in some contexts and not others? This special issue presents articles about people in Jordan, Uganda, the United Kingdom and the United States who live with Down syndrome, autism, intellectual disabilities, cerebral palsy, or histories of brain injuries. We focus on the disjunctive encounters between these individuals’ minds and the varied relational processes in their surrounding social world in order to understand why different mental characteristics become points of concern and comparison at some points and not others – and thus to raise questions about how “fitting in” works altogether.

KEYWORDS:

• Care
• classification
• cognition
• disability
• ethnography
• mind

Introduction

Why do some people’s minds seem conspicuous, disabled, and ill-fitting in some contexts and not others? In this special issue of Medical Anthropology, we focus on people in Jordan, Uganda, the United Kingdom, and the United States with diverse cognitive and intellectual abilities, many of whom live under the description of conditions such as Down syndrome, autism, intellectual disabilities, cerebral palsy, and histories of brain injuries. We explore social relations in which such people’s minds become distinctive concerns in comparison to others, and in which the “mind” becomes an object of concern itself. We investigate what it is, in relation to someone’s mental interior, that is taken to be problematic in a given context. Why do some minds stand in need of distinct classification, when others go unremarked upon? What does that context demand of people such that it renders some mental characteristics especially salient, and thus particularly conspicuous when they are absent? Our question, in each case, is why do these people not fit here?

These questions about people’s diverse cognitive, emotional, and intellectual capacities focus our attention in new ways on how the mind and disability are socially produced. The emphasis we place on relational context over individual ability fleshes out the central argument of the “strong social model of disability,” that disability is located in contexts not in individuals, and its subsequent elaboration in work throughout disability studies and the emergent anthropology of disability (Devlieger 2018; Shakespeare 2013). But we depart from the strong social model’s focus on the cause of disability in economic, institutional and physical structures (Finkelstein 1988; Oliver 2009; Union of the Physically Impaired against Segregation (UPIAS) and the Disability Alliance 1976). That attention, in no small part, stems from the model’s overwhelming focus on bodily disability, one which echoes a wider neglect of mental forms of disablement in academia and society at large (McKearney and Zoanni 2018). By contrast, we focus on the mind and on the concrete, everyday relations of care that are crucial to individuals, families, and communities getting by. In doing so, we demonstrate ways in which people’s minds trouble the culturally specific relational processes by which people, in practice, depend upon one another.

To get at the production of mental disability in quotidian encounters we have found it more useful to turn to disability scholar Rosemarie Garland-Thomson (Garland-Thomson 2011; see also Siebers 2008). She reinterprets disability, against the generalizing trends of the strong social model, as a process of “misfitting” in the “dynamic encounter between flesh and the world,” during which some bodies do not fit with the ways social life is constructed and enacted in practice (Garland-Thomson 2011:592). Garland-Thomson’s argument foregrounds particularity and particular relations in a way we find helpful, since it locates disability not in individual people nor in grand structures and totalizing explanations, but in the everyday connections between people. Fitting or misfitting is a matter of ongoing, diverse, and changeable relational processes. Misfitting thus allows us to attend to (rather than explain away) someone’s particularity as a way to increase (rather than decrease) attention to the distinctiveness of their disjunctive encounter with the social world (Garland-Thomson 2011:592).

In taking up Garland-Thomson’s ideas about misfitting in relation to the mind, our articles add something new to work on the cultural construction of mental conditions. It is often assumed, in this work, that ideas, labels, and categories about normality and deviancy shape how the mind is seen (Edgerton 1970; Langness and Levine 1988). It is rarer to find scholars paying attention to the dynamic fit between the particular way in which a given person’s mind works and the everyday relational processes in which cultural expectations are worked out (Davis 2012; Marrow and Luhrmann 2017). The attention to actual relations of care in our articles, by contrast, takes us into the richness of local negotiations over what people mean when they talk about minds, and when they talk about minds being disabled. We demonstrate that the ability, for instance, to speak, to care for another in the framework of marriage, or to be persuaded, are the actual reasons people stand out or not. These reasons are not straightforwardly about intellectual or cognitive disabilities, nor about the way people’s capacities are framed by hegemonic biomedical categories. They emerge in relation to the capacities that are often unexpectedly salient to everyday life in a particular place and cannot be summed up by a totalizing narrative.

We look ethnographically at social relationships in which the way someone’s mind intersects with the social world becomes the basis for asking questions about difference, similarity, dependence, and independence. Doing so shows that these issues unfold with much greater nuance and complexity than the simple top-down application of medicalized categories of difference. The processes by which people come to fit or not fit are diverse – and rarely solely a matter of imposed exclusion. Ethnographies of Jordan and Uganda in this issue, for instance, show how, even in societies where dependence is taken as an obvious part of personhood, social relations and structures are still premised upon possession of certain competencies and capacities. By contrast, the ethnographies of the UK and the US demonstrate how forms of care, designed to respond to a lack of fit produced by a seeming excess of dependence, frequently fail to comprehend and engage with the diverse ways that care-recipients’ minds work in practice.

Christine Sargent explores how Jordanian parents of adolescents with Down syndrome navigate the prospect of their children marrying. Sargent shows how the kinship system is bound up with the daily pragmatics of care. In doing so, she illustrates how disability is constituted through decisions about who can enter into the institution of marriage, who should be excluded, and for what reasons. Questions about marriage and marriageability thus turn out to be questions about whether individuals can care for another. Sargent’s analysis reveals that what excludes people from the institution of marriage is not the cognitive effects of intellectual impairment, or their classification as having “Down syndrome.” Rather it is the locally defined ability – or inability – to care for kin.

Tyler Zoanni, in his research on Uganda, points out that people with cerebral palsy, autism, and intellectual disabilities exist in a “puzzling distribution” of living and working arrangements, different from how people with the same individual characteristics would likely live in Western countries. The ethnography introduces us to a taxi driver with Down syndrome, a man with cerebral palsy whose residence is a group home for people with intellectual disabilities, and several situations that suggest that the category of autism is rarely applied to people who speak. What is it about the Ugandan context, Zoanni asks, that causes some people to occupy certain categories of disability? His analysis suggests that in Uganda, linguistic capacity is a pivotal marker of competence, and therefore, the ability to speak shapes categories of disability in a distinctive way.

Cara Ryan Idriss describes a self-run community of autistic adults in North America who gather to share meals and attend cultural events. The ethnography reveals group members’ subtle work building social lives on the periphery of, but also within, a neurotypical world; as demonstrated in such quotidian social activities like dining at a restaurant. This work is characterized by a distinct flexibility: group members are unusually comfortable with unexpected and unexplained arrivals and departures from gatherings, changing needs and emotions, and unanticipated changes in plans. The group’s social dynamic undermines dominant biomedical depictions of autistic adults as unable to fit into social life because of an unrelenting rigidity in their thinking and socializing. In doing so, it also throws a spanner in the works of pedagogical interventions that assume such individuals benefit most from social relationships that are predictable to the point of being scripted. In exploring the ways in which group members live socially, Ryan Idriss raises questions about whether they are conspicuous to others because they are, in fact, too flexible to fit in with a hidden rigidity in neurotypical relations.

Anna Zogas explores the case of US military veterans who have concerns about memory and forgetting on the everyday scale of misplacing car keys, forgetting errands, and not remembering conversations. Unexpectedly, their doctors at a specialized clinic approach the problem by demedicalizing it. As a form of care, doctors question what distinguishes the forgetfulness that these veterans report from everyday forms of inattention. This care is only possible when both doctors and veterans are engaged in reflexively considering the categories of normal and problematic forgetting, taking neither for granted. But some veterans find this approach to care unsatisfying – wanting to receive a clearer diagnosis, and a more direct intervention to sort their problems out. To be categorized as normal is not a relief for them, and ironically it provides little hope to veterans of being able to better fit better into “normal” life.

Patrick McKearney’s study of a home for adults with intellectual disabilities in the UK explores how situations such as bathing, taking medications, and lunch outings challenge carers’ understanding of these individuals’ conditions. These workers aim to cultivate in their charges an independent capacity to direct the caring relationship, but find themselves inevitably undermining this aim when their charges take decisions that carers believe they cannot responsibly support and leave unchecked. McKearney thus demonstrates that, while those with intellectual disabilities are generally regarded as heavily “dependent” in this context, they cause unanticipated problems for these caring relationships precisely because they are independent-minded. They do not fit because they do not depend in an expected way, revealing that Euro-American understandings of personhood and relations are more intimately entangled with dependence than is generally apparent.

Our close attention to the range of ways that minds come to misfit in diverse contexts has consequences not solely for how we think about the mind but also how we think about care. It presents a challenge to a range of work across and beyond anthropology that focuses on relationships of care as an avenue to inclusion, and thus proposes accepting and relating to dependence and vulnerability as a solution to problems generated by ill-fitting (Biehl 2012; Kittay 2019; Kleinman 2010; Pols et al. 2017; Siebers 2007; Taylor 2010). We demonstrate that care is itself typically premised upon certain assumptions about how minds work – assumptions that may just as well generate and compound ill-fitting as dissolve it (Aulino 2016; Davis 2012; Lester 2019; Luhrmann 2001).

The everyday processes by which people relate to one another and get by are necessarily particular – forging certain kinds of connections between certain aspects of people and not others. This means that certain mental characteristics that are rendered pathological in some contexts become irrelevant and inconspicuous in others, enabling forms of connection that might seem impossible from another perspective. But it also means that there is no utopian form of relationship in which everyone might be readily included without complication. Part of Garland-Thomson’s point, as we read it, is that the everyday relational ground on which people encounter one another is never flat and even, but particular, diverse, and contoured. Our focus on the mind thus provides a way to dig deeper into the particularities of any given context (Luhrmann 2011). What assumptions about the mind are operative in a given caring context and shape who is taken to stand in need of care in the first place (Cohen 2000; Livingston 2005; Pinto 2014)? How is the relational work of care premised upon particular forms of mental connection, such as intention-reading (Mezzenzana 2020; Ochs and Schieffelin 1984; Robbins and Rumsey 2008)? What kind of mental characteristics does it expect from, and aim to cultivate in, care-recipients (Brodwin 2013; Davis 2012; Lester 2019)?

These articles enable us to compare the different ways in which constructions of non-normative cognition are related to processes of care. This intimate connection between the mind and care raises questions about both parts of what we might call “cognitive disability.” Cross-cultural difference affects not only who is seen as mentally impaired, but also what it means to have a certain kind of mind, or to be incapable in the first place. When we come to think about “including” people, we need to know much more about how and why people end up misfitting, the effects of their misfitting, and just what it is we are trying to fit them into.

Acknowledgments

We thank Cara Ryan Idriss, Christine Sargent, and Tyler Zoanni for joining us in this project, and for offering generative ethnographic cases that sharpened our thinking on cognitive disability. We also thank Lenore Manderson for her generous editorial guidance, and Victoria Team for shepherding this special issue through all stages of its preparation. We are grateful to Tanya Luhrmann, Jo Cook, Janelle Taylor, Jessica Cooper and Junko Kitanaka for their vital contributions to the earlier stages of this project.

Additional information

Funding

Patrick McKearney’s research was funded by a generous scholarship from Trinity College, Cambridge and support from the Department of Social Anthropology at the University of Cambridge. Anna Zogas’ writing was supported by an Advanced Fellowship from the United States Department of Veterans Affairs, Office of Academic Affiliations and the Center for Healthcare Organization and Implementation Research (CHOIR), VA Boston Healthcare System. The views expressed here are those of the authors alone, and do not necessarily represent the position or policy of the Department of Veterans Affairs or the US government.

Notes on contributors

Patrick McKearney

Patrick Mckearney is a Research Associate and Affiliated Lecturer in Social Anthropology at the University of Cambridge, working on the care that people with intellectual disabilities receive in the UK and India. He has published widely on ethics, disability, care, religion, and the mind.

Anna Zogas

Anna Zogas is a Postdoctoral Fellow at the Center for Healthcare Organization & Implementation Research, VA Boston Healthcare System, Boston, MA.