Cognitive Disability - Berghahn Journals

Cognitive Disability Towards an Ethics of Possibility Faye Ginsburg, New York University Rayna Rapp, New York University

Abstract This afterword to this special issue of The Cambridge Journal of Anthropology, entitled ‘For an Anthropology of Cognitive Disability’, explores the intersections of disability studies and ethnographic research on cognitive difference. We offer a brief scholarly genealogy, discuss how these articles provide recognition for ‘the disarticulate’, and consider how anthropologists working on this subject might contribute to an ethics of possibility. Keywords: difference, disability studies, diversity, ethnography, futurity, personhood

Anthropology is well known for its capacious and ever-expanding framework and its embrace of diversity. Yet, as we argued in our 2013 Annual Review of Anthropology chapter ‘Disability Worlds’, the universal circumstance of disability – how the realities of embodied, cognitive and emotional impairments are understood in different socio-cultural contexts as part of the human condition – has too often been neglected in our field. Disability provides a powerful lens to refocus and potentially transform thinking about new and enduring concerns shaping contemporary anthropology. Ethnographic studies of embodiment, personhood, kinship, gender/ sexuality/reproduction, cognitive diversity, violence and its disabling aftermath, as well as citizenship and biopolitics, remain incomplete and undertheorized without the consideration of disability. At its most basic, the recognition of disability as a social fact helps us to understand the cultural specificities of personhood and to reconsider the unstable boundaries of the category of the human. This special issue of The Cambridge Journal of Anthropology has stepped into the breach, addressing what is perhaps the most challenging and neglected area of anthropological engagement with disability: cognitive impairment.

© The Cambridge Journal of Anthropology Volume 36, Number 1, Spring 2018: 113–119 doi:10.3167/cja.2018.360109

Faye Ginsburg and Rayna Rapp

A brief lineage Historically, anthropological studies of disability were relatively rare until the late twentieth century, often intellectually segregated into the realm of medical and applied anthropology. Yet the anthropological study of cognitive difference, not always identified as disability, has a prehistory of important if under-recognized research on the cultural impact of ‘thinking differently’ that precedes the current moment, as Zoanni makes clear (this issue) in his invocation of Meyer Fortes’s discussion of ‘marginal personhood’ in West Africa. The more recent legacy we sketch below is significant in at least two ways. First, such scholarship offers an important intervention by rendering finely etched portraits of people too often marginalized and even despised, insisting on their humanity, whatever their differences in communicative style. Second, this research does what anthropology does best by identifying the value of widespread forms of diversity that have too frequently been prejudicially ignored. We see this current special issue as inheriting this legacy. Notably, the 1967 publication of Robert Edgerton’s monograph, The Cloak of Competence, was foundational both for its insights and for its attention to a historical paradigm shift regarding the reintegration of people with ‘mental retardation’ in American public life. Edgerton’s title indexes the tactics used by his interlocutors who learned how to ‘pass’ when sent back to community living after long-term institutionalization, as asylums were shuttered in the US (and beyond). Three decades later, Michael Angrosino published his rich accounts based on a decade of fieldwork with adults with what Americans now call intellectual disabilities (ID) in Opportunity House: Ethnographic Stories of Mental Retardation (1997). He pioneered creative collaborative research with people with ID, having them author short stories that painted a vivid portrait of their lives as people whose humanity is not only often overlooked but frequently disparaged (Angrosino 1994, 1997). By the twenty-first century, new work emerged in this lineage; for example, Karen Nakamura’s engaged research at Bethel House advanced the collaborative approach in new ways. In her book, A Disability of the Soul, she studied an intentional community founded by a visionary psychiatrist for people with schizophrenia and other psychiatric disabilities in a small fishing village in northern Japan, portrayed in both her documentary film as well as her writing (Nakamura 2010, 2013). Nakamura takes seriously the imagination of those who hear voices instructing their actions. Her ethnography highlights how residents care for each other through moments of profound crisis by collectively embracing the alternate reality produced by hallucinations. Bethel has even become famous as a tourist destination for its annual storytelling competition entitled the ‘Hallucinations and Delusions Grand Prix’. Using her own experiences with depression as a point of identificatory entry, Nakamura shows how crucial reflexivity is in establishing an ethics of ‘shared anthropology’ that is deeply informed by the mantra of disability studies and activism, ‘Nothing about us without us’. This may seem like a simple advocacy slogan but its ethical implications are profound, if challenging, for the 114 • The Cambridge Journal of Anthropology

Cognitive Disability: Towards an Ethics of Possibility

politics of research that we ignore at our peril. As our colleagues in disability studies have taught us, we need to reflexively understand how we are in existential and political alliance with our subjects, before we stand in judgement of the moral worth of our interlocutors. Recent studies of autism continue this legacy of recuperating the humanity of those with cognitive difference. Anthropologists working in this area, for example, are rethinking widespread stereotypes of people with autism as asocial and unable to interpret the feelings of others; in short, they challenge the deficit model by ‘Rethinking Autism’ (Solomon and Bagatell 2010) through their commitment to the inclusion of diverse minds. This ‘nothing about us without us’ approach is evident in the work of autistic primatologist Dawn Prince, dedicated to ‘illuminating not the disability of autism, but the reward of the struggle and the gifts that are part of a different way of being’, including her role as ‘mother to a son who would himself be diagnosed as autistic in a different context’ (Prince 2010: 57). Autistic sociality and creativity are central findings of Ochs and Solomon in their long-term studies of children on the spectrum, their families and their schools. This work confirms the efforts of autistic self-advocates to gain recognition not only for their particular sensory attunements but also for their distinctive personhood (Brown et al. 2017; Ochs et al. 2004; Ochs and Solomon 2010; Solomon 2010). Richard Grinker’s (2007) influential and persuasive book on autism, Unstrange Minds, is exemplary of research that takes the ethics of alliance seriously. Writing not only as an accomplished anthropologist but also as a committed, caring and activist father of a daughter diagnosed with autism, he weaves together a reflexive approach with ethnographic comparison of what it means to live with autism in other locations across the globe. Clearly, this lineage has helped to establish the exploration of cognitive difference across the life span and in diverse settings as an important anthropological mission.

The disarticulate: research and recognition The articles in this special issue build on this legacy; they also take on a significant challenge regarding the possibilities of collaborative research with ‘disarticulate’ subjects (Berger 2014). Is it indeed possible to cleave to the mandate of ‘nothing about us without us’ when working with subjects who have difficulty expressing themselves verbally although they may have powerful ‘signatures’, as Tyler Zoanni makes clear? This is a challenge that disability studies with its commitment to selfadvocacy and activism has not really met. Yet, even when collaborative approaches are difficult, ethical research is nonetheless possible. Indeed, the recent book Loneliness and Its Opposite by anthropologist Don Kulick and gender studies scholar Jen Rydström (2015) offers an important exemplar. Their ground-breaking research on ‘sex, disability, and the ethics of engagement’ is set in care facilities for adults with profound cognitive disabilities in Denmark and Sweden. The authors offer a powerful ethnographic account and analysis of ‘the actual lives … of people … who have little or no verbal language, who do not engage in cultural critique The Cambridge Journal of Anthropology • 115


or political activism, who live in institutions or group homes, who require a great deal of assistance to manage basic activities like eating or communicating and getting by in their day-to-day lives’ (ibid.: 15). As the authors make clear in their introduction, few anthropologists have made the effort ‘to really pay attention to disabled individuals who frequently get left out of discussions or theories about disability because they have intellectual limitations or because they are dependent on guardians or other caregivers to interpret their vocalisations or movements’ (ibid.: 14). Extending this kind of research to other locations, the anthropologists in this issue demonstrate how alternative communities and settings can become the source of social possibility when kinship structures and imaginaries are often strained to breaking point by the difficulties of caring for family members with serious cognitive impairment (cf. Rapp and Ginsburg 2011). Their settings are diverse. Patrick McKearney shows us the impact on caregivers of the intentional theological framing of human relationships at L’Arche through the radical Catholicism of Jean Vanier studied in its UK iteration. He follows carers as they come to recognize and embrace the ‘moral worth’ of community residents as ‘charismatic and intuitive agents’, shifting standards of personhood away from the valorization of the rational. Christianity is also central in Tyler Zoanni’s Ugandan case where care for people with severe cognitive impairment known as abalemu (or failed persons) is provided primarily in religious settings. His research focuses on several notable characters, revealing how ‘failure’ can be productive of unexpected possibilities for personhood without ‘voice’, what Zoanni calls their ‘signature’. He, along with carers and other participants, recognizes the striking proxemics and affective embodiment that residents with severe cognitive disabilities deploy to powerful effect. Anna Zogas brings us to the US where American military veterans returning from Afghanistan and Iraq cope with the cognitive impairments produced by the ‘signature injury’ of America’s longest war: mild traumatic brain injuries (TBI). In a specialized class offered at the TBI clinic at a Department of Veterans Affairs (VA) medical centre, former soldiers learn to reframe impairments as an adjustment of ‘military-minded bodies to new civilian environments’. Zogas points out that this curriculum builds on contemporary materialist understandings of the brain, while providing veterans with a positive way to understand their difficulties in school and other civilian settings. Finally, Annelieke Driessen’s article offers another perspective, drawing on research in a Dutch nursing home with ‘fourth age’ people who have dementia and their creative caregivers. She shows how alternative pathways to pleasure are a relational achievement when offered as invitations to ‘appreciating subjects’. Her compelling descriptions of quotidian joys found in music, bathing and food illustrate how these small pleasures produce a momentary transformation of elderly subjects with dementia. We think of these as ‘signature pleasures’, following the lead of other authors in this issue. Her insight and insistence that pleasure is contagious, even for the most impaired, reflexively encompasses the caregivers and the ethnographer herself. 116 • The Cambridge Journal of Anthropology


These rich articles all demonstrate the virtues and contributions of careful and deep ethnography that takes seriously alternative modes of personhood-in-themaking for people with diverse experiences of cognitive impairment and their allies. Indeed, we argue that the growing field of disability studies can benefit from what anthropology has to offer: the close observation of the daily practice and cultural framings of cognitive difference in diverse social locations. As the authors in this special issue reveal, such attentive ethnography is essential to theory building, particularly when placed in comparative perspective. Furthermore, these authors remind us that even intimate caregiving relationships and the resources to provide them are shaped by geopolitics and political economy: the signature injuries of the longest war in American history and resulting therapeutic interventions; the evacuation of Ugandan state responsibility for those with serious disabilities, a vacuum filled by the legacy of Christianity first introduced by nineteenth-century missionaries; the emergence of extreme old age in the ‘global North’ and its accompanying escalating rates of dementia as addressed by the state’s provision of care in Dutch nursing homes; and the alternative relational understandings of ‘moral worth’ that are collectively taught to L’Arche UK caregivers, in contrast to the national health care regimes of the secular state. Like all perceptive ethnography, these articles draw us into the intimate revelations of local daily life; they also offer the opportunity to scale up to a broader perspective on cognitive impairment across the globe.

Thinking forward/thinking relationally This special issue also reminds us that cognitive disability is not a category of difference unto itself; rather, it is profoundly relational and radically contingent, dependent on specific social and material conditions that too often exclude full social participation in society. Beyond such exclusions, a focus on cognitive disability also reveals creative cultural production through unexpected sites of innovation and inclusion. These range from the levelling impact of ritual footwashing between carers and long-term residents at L’Arche UK described by McKearney, to the recognition of Robinah whose incorporation as a skilled caregiver at Hope Centre overshadows her own cognitive impairment; Zoanni calls this ‘care in the middle voice’. Further examples include Driessen’s description of visiting family members’ joy at seeing and joining in bi-weekly dances with their elderly relatives at De Zonneweide; and the work of Elizabeth who mobilized current neuroscience to help TBI vets reimagine themselves and their futures by ‘thinking about thinking’ in the Cognitive Skills for College Programme class that Zogas observed. These articles show how community, religion and other social resources for support and inclusion are essential to the interdependence on which disability integration ultimately depends. Furthermore, such ethnography helps to complicate ideas such as agency, suggesting alternative discursive modes for understanding different kinds of minded bodies that demand attention to their own existential reality. The Cambridge Journal of Anthropology • 117


We suggest that this kind of ethnography beckons us to ask a further question: recognizing that disability futures are fragile and uncertain at best, how can the anthropological study of cognitive disability contribute to building what Arjun Appadurai calls an ‘ethics of possibility’? Appadurai describes these tenets as ‘ways of thinking, feeling and acting that increase the horizons of hope, that expand the field of the imagination, that produce greater equity [and] … the capacity to aspire, and that widen the field of informed, creative and critical citizenship’ (2013: 295). This approach, we suggest, indexes a shared horizon for both the anthropology of cognitive disability and disability studies. The foundational existential condition of an ethics of possibility lies in the fundamental if often-denied truth that we are all only ‘temporarily able-bodied’ (TAB), as disability rights activists have long pointed out. This insight gives a distinctive temporality to the slogan, ‘Nothing about us without us’, a recognition of the precarity of existence across the life course to which we are all vulnerable. In that spirit, we cede the final word to Rabbi Elliot Kukla, whose op-ed essay appeared in the ongoing New York Times series on ‘becoming disabled’ on 10 January 2018: We are born needing care and die needing care, and I am no exception. At brief moments in the middle of life, we hold the illusion of independence, but we are always driving on roads we did not build, eating foods we did not pick or raise. Allowing the illusion of my own independence to drop away unmasked a fundamental truth of being human. Like many people, I had once measured my worth by my capacity to produce things and experiences: to be productive at work, share responsibilities at home, ‘show up’ equally in my friendships and rack up achievements. Being sick has been a long, slow detox from capitalist culture and its mandate that we never rest. Slowly, I found a deeper value in relationship beyond reciprocity: an unconditional love and care based in justice, and a belief that all humans deserve relationship, regardless of whether we can offer anything measurable back. In these discoveries, I’ve been led by other sick and disabled people, whose value had always been apparent to me. Amid the brilliant diversity of power wheelchairs, service dogs, canes and ice packs, it’s easy to see that we matter just as we are.

Faye Ginsburg and Rayna Rapp are both Professors in the Department of Anthropology and the Center for Disability Studies at New York University. The recipients of multiple grants and awards and authors of books and articles on their own, together they edited Conceiving the New World Order: The Global Politics of Reproduction (California, 1995) and wrote over twenty articles including ‘Disability Worlds’ in The Annual Review of Anthropology (2013). They are currently writing a book with that title based on a decade of ethnographic research.

References Angrosino, M. 1994. ‘On the Bus with Vonnie Lee: Explorations in Life History and Metaphor’. Journal of Contemporary Ethnography 23 (1): 14–28. 118 • The Cambridge Journal of Anthropology


Angrosino, M. 1997. Opportunity House: Ethnographic Stories of Mental Retardation. Walnut Creek, CA: AltaMira Appadurai, A. 2013. The Future as Cultural Fact: Essays on the Global Condition. New York: Verso. Berger, J. 2014. The Disarticulate: Language, Disability, and the Narratives of Modernity. New York: New York University Press. Brown, L. X. Z. et al. 2017. All the Weight of Our Dreams: On Living Racialized Autism. Boston, MA: DragonBee Press. Edgerton, R. B. 1967. The Cloak of Competence: Stigma in the Lives of the Mentally Retarded. Berkeley, CA: University of California Press. Ginsburg, F. and R. Rapp. 2013. ‘Disability Worlds’. Annual Review of Anthropology 42: 53–68. Grinker, R. R. 2007. Unstrange Minds: Remapping the World of Autism. New York: Basic Books. Kukla, Elliot. 2018. ‘In My Chronic Illness, I Found a Deeper Meaning’. The New York Times, 10 January. https://www.nytimes.com/2018/01/10/opinion/in-my-chronicillness-i-found-a-deeper-meaning.html. Kulick, D. and J. Rydström. 2015. Loneliness and Its Opposite: Sex, Disability and the Ethics of Engagement. Durham, NC: Duke University Press. Nakamura, K. 2010. Bethel: Community and Schizophrenia in Northern Japan. DVD, 40 min. Manic Prod. Nakamura, K. 2013. A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan. Ithaca, NY: Cornell University Press. Ochs, E., T. Kremer-Sadlik, K. G. Sirota, and O. Solomon. 2004. ‘Autism and the Social World: An Anthropological Perspective’. Discourse Studies 6 (2): 147–83. Ochs, E., and O. Solomon. 2010. ‘Autistic Sociality’. Ethos 38 (1): 69–92. Prince, D. E. 2010. ‘An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives’. Ethos 38 (1): 56–68. Rapp, R. and F. Ginsburg. 2011. ‘Reverberations: Disability and the New Kinship Imaginary’. Anthropological Quarterly 84 (2): 379–410. Solomon, O. 2010. ‘What a Dog Can Do: Children with Autism and Therapy Dogs in Social Interaction’. Ethos 38 (1): 143–166. Solomon, O. and N. Bagatell. 2010. ‘Introduction: Autism; Rethinking the Possibilities’. Ethos 38 (1): 1–7.

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