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Organizers' Statement

Disability Worlds

Faye Ginsburg and Rayna Rapp (New York University)

 

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 chapter “Disability Worlds,” this universal circumstance – 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.  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. This framework provides a powerful lens to refocus and potentially transform thinking about new and enduring concerns shaping contemporary anthropology. 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 symposium addresses the transformative value of critical anthropological studies of disability for many of our discipline’s key questions.  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 international spread and uneven impact of the disability rights movement in the 21stcentury, as well as cross-cultural work in anthropology show that what counts as a disability in different cultural settings is not obvious. The need for research and theorization cannot be underestimated, given that approximately 80% of the world’s one billion people with disabilities reside in what is glossed as “the global south.”   Anthropologists have interrogated the limits of a Western individualizing model when studying disability across the world. This work examines the presence or absence of disability in familial, community, religious and political life as constructed by larger notions of the social, relatedness, personhood, as well as diverse epistemologies regarding “normalcy.”  Our conference builds on this work, and is premised on the recognition that 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 disability also reveals creative cultural production. Unexpected sites of innovation, inclusion and the reframing of “the normal” are producing new kinds of “disability worlds.”

This is a propitious moment to gather a group of international scholars to consider how a disability perspective can expand and transform the discipline as anthropologists increasingly focus on the social, political, experiential, narrative and phenomenological dimensions of living with particular impairments in different cultural settings across the life span. Our symposium builds on the work of anthropologists who incorporate a critical disability studies perspective, working in diverse settings to consider if and how the promissory note of expanding inclusion (as well as barriers to it) shape the “world-making” of people living with disabilities and their allies. We hope to collectively grasp how the experience of disability -- whether named or unnamed – is reshaping understandings of personhood and boundaries of the human, while always accounting for broader social contexts that enable and constrain disability worlds. Concretely, this entails anthropological attention to this essential form of difference whether one studies kinship, sexuality, activism and political movements, technologies, religion, alternative communication/language practices, or the sensorium in light of atypical forms of cognitive and sensory processing and many other topics.

At the conference, we seek to understand how disability can provide a critical anthropological perspective on “everyday life with a difference,” often experienced in the shadow of a selectively globalizing neoliberal economy.  Disability is implicated in circumstances of increasing precarity, exacerbated by the erosion and privatization of resources in late capitalism, as well as the environmental impact of the anthropocene.  Additionally, the survival of fragile infants and those with chronic disease, along with the expansion of people living into “extreme old age” all challenge the scarcity of social labor for caregiving for those with disabilities (and other dependents) across the life cycle.  At the same time, social movements for disability rights, spreading unevenly across the globe since the late twentieth century, have made powerful claims for the growing recognition and inclusion of disability.  This is in tension with the drive toward perfectibility that fuels culturally seductive neo-eugenic medical interventions, now routinized in everyday biopolitics such as genetic testing for selective abortion of fetuses with potential disabilities; this technology is rapidly diffusing from rich to middle and low-income countries.  Such interventions raise utopian hopes of individual perfectibility and control that challenge the reality of disability and the crucial role of kinship, community, religion and other longstanding cultural resources for support and inclusion. These are essential to the interdependence on which disability integration ultimately depends.  Moreover, other instances of rapidly transforming technologies – including media, prosthetics, social networks, infrastructure, and assistive communication devices along with attendant therapies – have produced life-changing opportunities for people with disabilities and their supporters, across domains ranging from disability rights activism, to public culture, to intimate realms of kin and friendship where personhood and disability worlds take shape.  All require political will as well as a recognition that disability futures are fragile and uncertain at best.  Nonetheless, we ask conference participants to consider how our work, individually and collectively, might contribute to building an ethics of possibility in the construction of disability worlds.

Toward that end, the symposium is organized around the following topics:

  • Decolonizing Disability in Anthropology
  • Sexuality/Gender/Kinship
  • Biopolitics and its discontents
  • Inclusion/exclusion and habitable worlds
  • Technology, Creativity, media
  • Precarity, Violence, mobility.

 

We anticipate that each topic will also incorporate issues of kinship, activism, political transformation and discrimination, collaborative methods/theory, reflexivity, and life course perspectives.

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