Doctoral Dissertation Research: Impairment, Resilience, and Social Networks Among Disabled Women

残疾科学家早就注意到，随着年龄的增长，每个人最终都会变成残疾。随着医疗技术的进步，针对许多残疾的创新治疗方法增加了美国残疾人的数量。在这种加速增长的过程中，人们越来越需要了解是什么因素加强或限制了为残疾人提供的住宿和资源。这一博士研究项目调查了美国残疾女性群体的日常经历和社交网络。除了提供资金，以实证、科学的数据收集和分析方法培训人类学研究生外，研究结果还将与政府和非政府组织、医生和其他人分享，目的是改善对残疾人的护理。该项目还努力增进公众对有关美国残疾人的科学和科学方法的了解。这项博士论文研究项目考察了残疾经历和性别之间的关系，以及哪些支持网络改善或恶化了这些经历。该项目探索了特纳综合征(TS)患者的经历，这是一种染色体和激素紊乱，每2000名活着的女婴中就有一名受到影响。TS经常导致发育迟缓或不完全成熟和不孕，这使它成为研究性别和残疾之间关系的独特案例。研究将在北卡罗来纳州进行，考虑到患有这种疾病的个体聚集在一起，这是一个理想的地点：许多非营利性组织和一家专门的TS诊所提供接触这一人群及其资源的途径。访谈、对日常活动的观察，以及协作民族志的实验方法，将使我们深入了解TS患者的日常经历，包括他们面临的斗争、他们表现出的韧性，以及他们依赖和需要的资源。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势和更广泛的影响审查标准进行评估，被认为值得支持。

Scientists of disability have long noted that with age, everyone eventually becomes disabled. As medical technologies improve, innovative treatments for numerous impairments increase the number of disabled Americans. Amid this accelerated growth, there is an increased need to understand what factors enhance or limit the accommodations and resources that are made to disabled individuals. This doctoral research project investigates the everyday experiences and social networks of a population of disabled women in the U.S. In addition to providing funding for the training of a graduate student in anthropology in the methods of empirical, scientific data collection and analysis, findings will be shared with governmental and non-governmental organizations, doctors, and others with the aim of improving the care of disabled individuals. The project also endeavors to enhance the public's understanding of science and the scientific method with regard to disabled Americans. This doctoral dissertation research project examines the relationship between experiences of disability and gender, and what support networks improve or worsen these experiences. The project explores the experiences of individuals with Turner Syndrome (TS), a chromosome and hormone disorder that impacts one in every 2,000 live female births. TS frequently causes delayed or incomplete maturation and infertility, making it a unique case study for examining the relationship between gender and disability. Research will be conducted in North Carolina, an ideal locale given the clustering of individuals with this disorder: a number of nonprofits and a dedicated TS clinic offer access to this population and their resources. Interviews, observation of daily activities, along with experimental methods in collaborative ethnography will afford insight into the everyday experiences of individuals with TS, including what struggles they face, what resilience they demonstrate, and what resources they rely on and need.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.