Disability Equity in the Time of COVID-19

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Amanda Porche, “The Prophet Despairs Over the Future of Humanity“ (oil on canvas), by Amanda Porche, an autistic artist based in New York City. From the artist: “This was painted when I was still very depressed about the drastic changes that came along with the pandemic It shows a lone man on the edge of a cliff overlooking a sea of people. There is a human eye centered in the painting signifying that he is not just a mortal man. He is insightful and he is a prophet . What he is seeing is actually the future and it is a future of fire. The fires represents the dark times we are now living in and likely will see in the future. The prophet is distressed by what he sees.” View more of Amanda Porche’s work on her website and Instagram.

With funding from an NYU COVID-19 Research Catalyst grant, we are documenting the experiences of people with disabilities during the current pandemic. We chronicle not only vulnerabilities, but also creative initiatives for survival under these new conditions that are structured by old inequalities. Our digital repository of qualitative materials, including oral histories, will be preserved by the NYU Tamiment Archives.

Principal Investigators

  • Faye Ginsburg, Co-Director, Center for Disability Studies, Professor of Anthropology, FAS
  • Mara Mills, Co-Director, Center for Disability Studies; Associate Professor, Media, Culture & Communication, Steinhardt
  • Rayna Rapp, Professor of Anthropology; Affiliate, College of Global Public Health
  • Arthur Caplan, Professor of Bioethics, Dept. of Population Health, Langone

Graduate Student Researchers

Victoria Netanus Grubbs is a PhD Candidate in the Department of Media, Culture, and Communication at NYU. Her research interests include the political economy of cultural production, transnational/diasporic cultural networks, the semiotics of sound, and the aesthetic sociality of blackness. She is also an abolitionist educator commited to developing and supporting radical feminist leadership in underserved communities in the U.S. and abroad. Her role on this research team is to amplify the voices of Black disabled activists in New York City who have participated in various direct actions against the police state since the murder of George Floyd in the context of the Covid-19 pandemic.

Cara Ryan Idriss is a PhD candidate in Cultural Anthropology Her dissertation research focuses on a French government-funded initiative to promote the inclusion of students on the autism spectrum in French universities. Since 2017 she has participated in pre-dissertation research with autistic-run networks in the U.S., focusing on the ways autistic people provide support to each other in the face of limited social services for adults with developmental disabilities, and in the face of societal hostility towards autistic difference. In periods of forced social isolation during the COVID-19 pandemic, these support networks acquire new significance. Cara’s scholarly research builds on previous professional work with disabled students at NYU, particularly her work with colleagues and autistic students in the creation of NYU Connections ASD.

Harris Kornstein is a PhD candidate in Media, Culture, and Communication at NYU.  Harris’s dissertation research focuses on entanglements of queerness and surveillance capitalism, with an emphasis on queer/trans communities’ strategies for countering observation and commodification in digital media.  As a media- and performance-based artist, Harris also creates work around similar themes as well as on topics of chronic illness and care.  Harris is supporting this COVID-19 and disability research group by creating a website to document interviews, digital artifacts, artworks, and other materials contributed.

Nadia Mbonde is a first year PhD student in the department of Anthropology at NYU. Her research centers the Black maternal mortality crisis in New York State and the increased risks and changing medical landscape due to COVID-19. As a member of this research team, Nadia focuses on issues at the intersection of race and disability with a particular focus on conversations within Black Disabled Lives Matter as well as Black people’s lived experience with mental illness.

Emily Lim Rogers is a PhD candidate at the Department of Social & Cultural Analysis at NYU. Her ethnographic research is about chronic illness communities, particularly people with myalgic encephalomyelitis (also known as “chronic fatigue syndrome” or ME/CFS), a little-understood though profoundly debilitating disease. She examines how patient activists negotiate various institutional actors to turn amorphous symptoms into concrete disease. As COVID-19 cases turn into chronic, syndromic illnesses resembling ME/CFS, she’s studying how an acute, pandemic-scale virus with post-infectious effects may transform how invisible chronic illnesses are received and enacted.

Post-Doctoral Researcher

 Yan Grenier is a post-PhD scholar at NYU’s Center for Disability Studies. His research interests are concerned with dwelling, mobilities and becomings of people with disabilities in relation to urban assemblages and their associated governmentalities. In the course of the collective project surrounding COVID-19, Yan is studying the situated interactions between the transformations of New York City’s assemblages following the lockdown, and the ways people with disabilities are composing with the emerging realities and disturbances to their daily habits.

Recent articles from NYU Center for Disability Studies:

Lessons from the Disability Front: Remote Access, Conviviality, Justice, Contactos

From Quality of Life to Disability Justice: Imagining a Post-Covid Future, Somatosphere

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