1.1 Where Did This Book Come From?
All knowledge emerges from a network of somewheres. Its production is bound up in particular histories of particular people, who bring distinctive sets of pragmatic arts to the balance of their resources and vulnerabilities. This book is no exception. The editors of this volume, who are also the instigators of the workshop from which it emerged, first met at the Society for Psychological Anthropology biannual conference in San Diego in 2013. Both of us were working on autism in cultural context, and both of us were at transition points in our own professional lives, facing uncertain futures. Clarice, who had trained as an anthropologist at the University of Chicago and UCLA, was completing a postdoctoral fellowship at the Research Program in Subjectivity , Health and Medicine at the State University of Rio de Janeiro, amidst psychoanalysts and philosophers studying the impact of psychiatric knowledge and discourse on the formation of subjectivities. Elizabeth had just completed training in clinical psychology and anthropology at the University of Chicago’s interdisciplinary Department of Comparative Human Development; a year later, she would take a position in Psychology at Duquesne University, a department advocating for a culturally and historically situated, meaning -centered psychology grounded in traditions of phenomenological philosophy. We felt a synergy, not only between our own interests but also between the communities we inhabited and the intellectual currents and eddies swirling within their flows and obstructions. In response to both the opportunities and uncertainties before us, we decided we needed to make something. Over the following year, we met via video-conferencing each week to discuss what its parameters might be. Out of those conversations, the plan for the conference that would produce this volume was born.
As our ideas coalesced, our aim became to create an event that would place into dialogue two intellectual traditions: psychological anthropology and the South American tradition of Collective Health . These fields have multiple points of commonality with manifold implications for autism. Both take as their subject the complex interplay of individuals and their sociocultural contexts; both have developed theoretical and methodological tools to connect the levels of analysis that are frequently divided in debates about autism and issues of global health more broadly. However, due to differences and distances in language and geography, these two fields had not experienced much cross-pollination. Our hope was to start a conversation between them.
Encompassing the fields of social science, epidemiology, and health policy, Collective Health takes a social and political approach to the study of health and disease, working to articulate and propagate a model of health that is “socially established through intersubjective pacts within economic, social and cultural contexts” (ABRASCO 2004, in Ivo de Carvalho et al. 2007, 10). Collective Health possesses a distinct epistemological ethos characterized by a careful attention to the relationships between the individual and the state, especially around contested politics of health, and a deep grounding in the lived realities of service provision (Langdon and Follér 2012). Similarly, psychological anthropology has a long history of examining the interaction between psyche and sociocultural life, in all the particularities of each. As Tom Weisner explores in his contribution to this volume, psychological anthropology engages with the daily life experience of individuals, families, and communities, developing conceptual tools for both identifying and working across levels of analysis. We were particularly aware of “the position of psychological anthropology to engage in bridging research, practice, and policy,” especially when put into conversation with other disciplines and domains of practice (Korbin and Anderson-Fye 2011, 415).
As a phenomenon with irreducibly individual and interpersonal instantiations, possessing both robust similarities and intriguing differences across contexts, autism serves as a powerful point of departure from which to consider questions at the intersection of these two fields. How do individual differences that exceed or transcend local norms get conceptualized, diagnosed, and treated within different societies with different medical infrastructures and expectations for social relations? How do diverse processes of socialization affect the cross-cultural manifestation of individual differences? How do relationships between the individual, the community, and the state shape political claims about disability, biosocial identity, and public health ? How do individuals living under such descriptions understand their condition and themselves? Dis/ability is inextricably linked to the relationship between self and society (Ingstad and Whyte 1995); the power of autism to destabilize and reinscribe assumptions about sociality , intersubjectivity, and communication refracts these issues in disruptive and potentially generative ways.
In order for anthropological theory to effectively address these questions, we felt, its development needs to be driven by the inclusion of paradigms from outside the global North . However, the dominance of English as a scholarly language, the scarcity of resources within academic environments in low- and middle-income countries, and the challenges of speaking across deep-seated and long-standing ontological and epistemological differences all contribute to the marginalization of South American intellectual traditions within supposedly globalized discourses. In particular, as we observed the increasing influence of work in the field of Global Mental Health (GMH) , we were becoming increasingly concerned about the dominance of Northern perspectives and priorities within this growing field and its interventions. One aim of this event was to begin, in some small way, to destabilize this dominance.
A core premise of this event has always been that the contexts of knowledge production matter. Physical spaces and arrangements, institutional infrastructures, status hierarchies, and their impact on spatial position, the sheer distance that a voice can carry, when amplified (or not) through one technology or another—all of these things constitute a matrix through which ideas are born and through which they rise and fall. It felt important to us to come together in a physical way, to be in each other’s presence in an intentionally chosen location. We opted to locate the conference at the State University of Rio de Janeiro, taking advantage of the rich theoretical and philosophical approaches thriving within the Research Program in Subjectivity , Health, and Medicine while addressing an identified need within the program for training in ethnographic research methods. Countering the trend for South American intellectuals to train abroad and study literatures that may not be attuned to the needs and questions most relevant to the South American context, we hoped instead to introduce methodological tools that could be effectively adapted to address issues related to the organization of health and of governance unique to the Brazilian context.
We hoped, especially, to counter tendencies within Global Mental Health to depict the Global South as a place of lack, in need of rescue through Northern intervention. As Khan et al. (2012) observe, “[i]t is critical to note that the landscape of supportive interventions in LIMCs [low-to-middle-income countries] has not been void of alternative approaches to those developed in high-income countries, and that these approaches provide equally viable targets for research” (157); however, these approaches are often overlooked within discourses that focus on the absence of appropriate services. We sought to explore the wide range of understandings and practices already in place for addressing autism spectrum conditions and other developmental differences. In doing so, we follow Whitley’s (2014, 501) call to offer “no opposition without proposition”: a call to counter-balance critique of mental health interventions with an exploration of possible solutions to the problematics thus posed.
In planning the event, we made a conscious decision to prioritize depth of representation over maximizing geographic diversity. We could have opted to hold a “cross-cultural” conference in which we sought scholars from as many different countries as possible. (One agency denied our application for funding on the grounds that we had not done so). Instead, rather than attempting to seek “thin” representation from the widest variety of places and perspectives, we focused instead on establishing a “thick” and in-depth dialogue between two scholarly traditions that were each located within particular geopolitical and historical contexts.
In selecting our participants, however, psychological anthropology and Collective Health provided guiding principles rather than constraints upon acceptable disciplinary identities. We approached people whose work explored autism situated in particular contexts, whether those contexts be geographic, aesthetic , or linguistic. We sought scholars who were themselves positioned with regard to autism in a variety of ways: scholars who are themselves on the autism spectrum; scholars who have family members, partners, and friends on the autism spectrum; scholars who have worked with people on the spectrum in clinical contexts, and those who have worked with people on the spectrum in artistic and academic collaborations. All participants, in their work, address autism across levels of analysis, from individual development to global discourses, with a focus on the particular cultural and material contexts in which each of these phenomena manifests.
We were very fortunate to receive funding from the Lemelson/Society for Psychological Anthropology Conference Fund. Since 2008, this program has funded a number of small conferences and workshops that allow in-depth work on innovative and significant topics in psychological anthropology . Through the generosity of this program, we were able to fly eleven conference participants to Rio de Janeiro, hold the conference, and present our work to the public on the final day of the conference, via a complex assemblage of translators and audiovisual equipment.
1.2 The Event
Once our funding had been confirmed, we sent official invitations to the community of scholars with whom we had been planning the event. 1 Each participant was asked to prepare a twenty-minute presentation, and inv...