Standard Grant: Cochlear Implants, (Re)Distribution, Maintenance, and Cures

University Of Chicago, Chicago IL

Investigators

Abstract

This project is a multi-sited study of an innovative national program that provides deaf children below the poverty line with cochlear implants. The cochlear implant is the oldest and most widely used neuroprosthetic device and thus presents a rich opportunity to investigate the complex social issues surrounding the bionic creation, restoration, and enhancement of human capabilities. The World Health Organization estimates that 460 million people globally experience hearing loss. While the United Nations Convention on the Rights of Persons with Disabilities recognizes deaf people as a linguistic minority who should have access to signed languages, in the last two decades the use of cochlear implants to mitigate deafness has increasingly become a normalized procedure, with over 350,000 recipients worldwide. The prevalence of cochlear implants has sparked debates - e.g., about the ethics of elective surgery for children, its effects on signing deaf communities, and the very notions of normality, deafness, hearing, and disability as such. Cochlear implants create new categories of deaf people, "deaf hearers," who might hear typically in a sound booth, but who have increasingly complicated relationships with other deaf and disabled people and the categories of deafness and disability, and who negotiate access to state resources allocated to disabled people with different stakes. However, most scholarly analysis and accounts of these debates and categories have focused on developed contexts. In contrast, the project analyzes how the category of disability is changing in developing contexts because of biotechnological interventions. This research ethnographically analyzes how knowledge, practices, and experiences of and about cochlear implants circulate and interact with one another in a developing context that is unique in the scope and scale of its state-sponsored programs directed at deafness. Cochlear implants are material, moral, social, and political infrastructures that connect people with each other, with medicine, and with the state and they have the potential to remake identities, relationships, and educational and livelihood paths. The project involves conducting ethnographic research at schools, clinics, hospitals, meeting spaces, family households, and activist events as well as conducting in-depth interviews with multiple stakeholders including government officials, surgeons, rehabilitation professionals, cochlear implant manufacturers, educators, deaf people, and families. The project thus brings multiple discourses together under one science and technology studies research umbrella to illuminate the possibilities and limits of biotechnology adoption, adaptation, and maintenance. Extensive field work provides opportunity to interact with and gather data from key stakeholders ranging from user support groups and clinical device and care providers to government policy makers and the World Health Organization. In addition to a monograph, the project will produce and disseminate working papers of findings and convene a two-day conference at the University of Chicago featuring roundtables of diverse stakeholders to facilitate engagement at the end of this research project. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.