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.
