Disability Expertise and Design Justice for Post-COVID Equity

该项目将分析2019冠状病毒病大流行期间残疾人和慢性病患者的生活，了解他们的经历，并掌握他们在新的困难条件下生存的策略。残疾人，特别是有色人种和住在养老院的残疾人，感染和死亡的风险最大。记录和解释残疾专业知识以及边缘化群体应对大流行的方法，将为帮助残疾人在应对covid - 19后的健康风险以及与未来大流行和社会危机相关的健康风险时解决不平等问题提供关键信息。研究人员将与社区成员合作，收集记忆、故事、艺术品和其他材料，建立一个可公开访问的档案，称为“残疾COVID编年史”。社交媒体上的对话、数字公共会议记录、街头艺术和行动的照片也将被收集、解释和保存。这份档案对学者和未来致力于为残疾公民创造更好条件的人很有价值。项目成果将通过公共和学术出版物以及社交媒体、活动和城市合作伙伴关系广泛传播。该项目将收集和分析与COVID-19设计相关问题（例如，聚集生活、远程工作、远程治疗）的数据，并从“设计公正”的角度对案例进行比较和分析，重点关注远程技术和基础设施的创新使用。专家和残疾人预计，新冠疫情将对四个社会群体产生长期影响。这些群体包括：(1)患有慢性疲劳综合征的人，他们可以作为病毒后综合征和幸存者的典范，具有远程工作和远程亲密关系的长期专业知识；(2)智力残疾的成年人及其家庭，他们的高感染率和死亡率突出了聚集式住房的危害，他们正在积极设计新的长期辅助生活；(3)黑人残疾人的生命也很重要活动人士，他们强调种族和残疾在COVID健康风险中的交叉点，并正在开发可访问的物理和数字工具，以支持在线倡导和抗议；(4)黑人受试者面临心理健康挑战。该项目还将考虑在流动危机干预、由训练有素的精神健康患者提供同伴咨询以及由应对这些挑战的团体开创的远程治疗方面的新远程做法的潜力，以帮助支持残疾人社区。研究结果将发表在学术期刊、公开白皮书和公共媒体上。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 will analyze the lives of disabled and chronically ill people during the COVID-19 pandemic to understand their experiences and capture the strategies that they have developed for surviving under new, difficult conditions. Disabled people, especially people of color and those living in nursing homes, have been at greatest risk of infection and death from COVID-19. Documenting and interpreting disability expertise and the methods by which by which marginalized groups respond to the pandemic will provide crucial information for helping to address the inequities for people with disabilities as they manage health risk post-COVID and in relation to future pandemics and social crises. Researchers will collaborate with community members to collect memories, stories, artwork, and other materials to build a publicly accessible archive know as the “Disability COVID Chronicles.” Conversations on social media, records of digital public meetings, and photographs of street art and actions that are otherwise ephemeral will also be collected, interpreted, and preserved. This archive will be of value for scholars and for those working to achieve better conditions for disabled citizens in the future. Project findings will be widely disseminated in public and academic publications and through social media, events, and city partnerships.This project will collect and analyze data about COVID-19 design related issues (e.g., congregate living, telework, tele-therapy) and compare and analyze cases from a “design justice” perspective, focusing on innovative uses of remote technology and infrastructure. It focuses on four social groups that experts and the disabled anticipate will experience prolonged impacts from COVID-19. These groups include: (1) People with chronic fatigue syndrome who can serve as models of post-viral syndromes and survivorship with longstanding expertise in remote work and tele-intimacy; (2) Adults with intellectual disabilities and their families, whose high infection and death rates have highlighted the hazards of congregate housing, and who are actively generating new designs for long-term assisted living; (3) Black Disabled Lives Matter activists who underscore the intersection of race and disability in COVID health risks and are developing accessible physical and digital tools for supporting online advocacy and protests; and (4) Black subjects facing mental health challenges. The project will also consider the potentials for new remote practices in mobile crisis intervention, peer counseling by trained mental health patients, and teletherapy pioneered by groups responding to these challenges to help support the disabled community. Findings will be published in academic journals and publicly accessible white papers and public media.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.