Disability COVID Chronicles
Disability COVID Chronicles
The NYU Center for Disability Studies is documenting the experiences of disabled and chronically ill people during the current COVID-19 pandemic. Disabled people, especially people of color and those living in nursing homes or other congregate housing, have been at greatest risk of infection and death from COVID-19. In building a publicly-accessible archive, we collaborate with community members to preserve memories, stories, artworks, and other materials in a range of accessible formats. We are also preserving conversations on social media, records of digital public meetings, and photographs of street art and actions that are otherwise ephemeral. Our goal is to chronicle not only vulnerabilities, but creative initiatives for survival under these new conditions that are structured by old inequalities.
We take disability to be a diverse category that encompasses neurodivergence, aging, illness, mental disability, injury, and addiction, and welcome participants who may not identify with the term “disabled.” We are interested in a similarly wide range of experiences related to the pandemic, not limited to those who have contracted the virus: experiences of quarantine, remote work and unemployment, caregiving, stigma, activism, and medical rationing. To our knowledge, this is the only archive of the COVID-19 pandemic of 2020 that focuses explicitly on experiences of disability.
Share Your Stories and Materials
In addition to the ethnographic interviews and oral histories initiated by our team of faculty and graduate students, we are eager to be in dialogue with any members of the community who wish to have their experiences preserved. Our digital repository will be preserved and made accessible by the Tamiment Library and Robert F. Wagner Labor Archives, a part of NYU Special Collections, at New York University.
We invite you to share your experiences in one of the following ways:
If you would like to offer your own testimonial or narrative, you may do so in writing, audio, or video format using this form. You may use our questions to guide your responses; you may answer one or two of the questions; or you may choose your own structure for telling your story. Due to our limited resources, this option is preferred and offers you the most flexibility in scheduling and format.
We are also collecting a range of digital artifacts: artworks; correspondence and social media threads; protest graphics and flyers; mutual aid information; photo and video documentation. If you would like to contribute an artifact to the Disability COVID Chronicles collection, please complete this donation form.
If you would like to be interviewed by a member of our group, please complete this request for interview form. We are happy to conduct interviews in the format of your choice, from e-mail to telephone to Google Meet to in-person (when safe). We can ensure anonymity for those who request it.
Please note: in order to upload files to our forms, you will need to sign in to a Google account. If you do not have one, or if you have access needs not met here or other difficulty using these forms, please feel free to contact us at firstname.lastname@example.org to make alternate arrangements.
Background: COVID-19 and Disabled People
From the outset of the pandemic in the United States in March 2020, disability activists rallied to protest plans for medical rationing and to refute the flawed logic of mainstream journalists who “reassured” readers that only older people and those with disabilities would die from COVID-19. Through webinars, Zoom conferences, podcasts, social media posts, and in-person protests, these activists have continued to demonstrate disability expertise regarding quarantine, congregate housing, accessible tele-work and tele-education, media activism, disability bioethics, distributed networks of support and mutual aid. People across the disability spectrum have described their fears and negative medical encounters, as well as innovative approaches to survival, in opinion pieces, online advocacy, listservs, direct actions, and consultations with city and hospital administrators. Yet these voices and experiences remain marginalized in mainstream discussions of the impact and future consequences of the pandemic, despite the fact that 25% of Americans identify as having a disability. Much of this work has happened online: on websites, through virtual campaigns and actions, and via social media. While this strategy is crucial, especially given the nature of the crisis and the health concerns of many activists, online content is highly ephemeral and is easily lost or deleted.
We hope to render this disability expertise more permanent and public, providing models of disability justice for post-COVID living. Based on our researchers’ community membership and existing fields of study, our initial interviews focus on: Black disabled activists (especially those who are part of Black Disabled Lives Matter); Black maternal mental health; autistic people; people with mobility impairments; people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS); people with intellectual and developmental disabilities; and parents, advocates, and self-advocates working on housing support and reform. However, we welcome oral histories and artifacts from anyone with a disability, defined broadly, to borrow from Patty Berne of Sins Invalid as including “people with physical impairments, people who identify as ‘sick’ or are chronically ill, ‘psych’ survivors and those who identify as ‘crazy,’ neurodiverse people, people with cognitive impairments, people who are a sensory minority.” In addition to the value such “archives of the present” will have for future disability activists, artists, documentarians, and scholars, our collection documents the influence of this unanticipated public health crisis on the everyday lives of disabled people, and how these changes endure over time, reshaping the body politic.
Post-Doctoral and Graduate Student Researchers
Victoria Netanus Grubbs
Cara Ryan Idriss
Emily Lim Rogers
Recent Articles from our team
- Faye Ginsburg, Mara Mills, and Rayna Rapp, “Lessons from the Disability Front: Remote Access, Conviviality, Justice,” Contactos
- Faye Ginsburg, Mara Mills and Rayna Rapp, “From Quality of Life to Disability Justice: Imagining a Post-Covid Future,” Somatosphere
- Emily Lim Rogers, “Staying (at Home) with Brain Fog: ‘Un-witting’ Patient Activism,” Somatosphere