Disability COVID Chronicles

Photograph of a painted mural by artist Chella Man, depicting illustrated hands spelling out the message "Black Disabled Trans Lives Matter" in American Sign Language. The letter "a" in the words "black," "disabled," and "trans" are all connected. The hands are colored using the colors of the trans and Pride flags (including black and brown). Learn more about this art work on Chella Man's website.

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 disabilitycovidchronicles@nyu.edu 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.

Research Team

Principal Investigators

Color photo of Faye Ginsburg standing in front of a microphone at a podium.

Faye Ginsburg

Co-Director, Center for Disability Studies; Professor of Anthropology, FAS
Color photograph of Mara Mills lecturing

Mara Mills

Co-Director, Center for Disability Studies; Associate Professor, Media, Culture & Communication, Steinhardt
Color photograph of Rayna Rapp

Rayna Rapp

Professor of Anthropology; Affiliate, College of Global Public Health
Color photograph of Arthur Caplan

Arthur Caplan

Professor of Bioethics, Dept. of Population Health, Langone

Post-Doctoral and Graduate Student Researchers

Color photograph of Victoria Netanus Grubb

Victoria Netanus Grubbs

PhD candidate, Media, Culture, and Communication
Color photograph of Cara Ryan Idriss

Cara Ryan Idriss

PhD candidate, Anthropology
Color photograph of Harris Kornstein

Harris Kornstein

PhD candidate, Media, Culture, and Communication
Color photograph of Nadia Mbonde

Nadia Mbonde

PhD student, Anthropology
Color photograph of Emily Lim Rogers

Emily Lim Rogers

PhD candidate, Social & Cultural Analysis
A photo of Yan Grenier, a light-skinned person standing in front of a bookshelf

Yan Grenier

postdoctoral scholar, Center for Disability Studies


Please see our CDS Happenings post for more information about our research team.

Recent Articles from our team

Additional Covid-19 Archive Projects

Contact

Please contact us at disabilitycovidchronicles@nyu.edu with any questions or comments.

Follow us on Twitter: @TamimentLibrary and @cdsNYU.

 

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