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

这个项目是对一个创新的国家项目的多地点研究，该项目为贫困线下的失聪儿童提供人工耳蜗植入。人工耳蜗是最古老和最广泛使用的神经修复装置，因此为研究围绕仿生创造，恢复和增强人类能力的复杂社会问题提供了丰富的机会。世界卫生组织估计，全球有4.6亿人患有听力损失。虽然《联合国残疾人权利公约》承认聋人是语言上的少数群体，他们应该有机会使用手语，但在过去的二十年里，使用人工耳蜗来减轻耳聋已经日益成为一种常态化的程序，全世界有超过35万人接受了人工耳蜗植入。人工耳蜗的普及引发了争论——例如，关于儿童选择性手术的伦理问题，它对手语聋人社区的影响，以及正常、耳聋、听力和残疾的概念。人工耳蜗植入创造了新的聋人类别，即“聋人听者”，他们可能在音响亭里正常地听到声音，但他们与其他聋人和残疾人的关系越来越复杂，他们与聋人和残疾人的类别越来越复杂，他们通过谈判获得分配给不同利益的残疾人的国家资源。然而，对这些争论和分类的大多数学术分析和描述都集中在发达的背景下。相比之下，该项目分析了在发展中国家，由于生物技术干预，残疾类别正在发生怎样的变化。本研究从民族志上分析了在发展的背景下，耳蜗植入的知识、实践和经验是如何相互传播和互动的，这在范围和规模上都是独一无二的，是由国家资助的针对耳聋的项目。人工耳蜗是一种物质的、道德的、社会的和政治的基础设施，它将人们与他人、与医学、与国家联系起来，它们有可能重塑身份、关系、教育和生计道路。该项目包括在学校、诊所、医院、会议场所、家庭和活动家活动中进行民族志研究，并对包括政府官员、外科医生、康复专业人员、人工耳蜗制造商、教育工作者、聋人和家庭在内的多个利益相关者进行深入访谈。因此，该项目将多种话语集中在一个科学和技术研究的保护伞下，以阐明生物技术采用、适应和维护的可能性和局限性。广泛的实地工作提供了与从用户支持小组和临床设备和护理提供者到政府决策者和世界卫生组织等主要利益攸关方互动和收集数据的机会。除了专著外，该项目还将制作和传播研究结果的工作文件，并在芝加哥大学召开为期两天的会议，由不同利益相关者参加圆桌会议，以促进研究项目结束时的参与。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

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.