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How to Be Disabled in a Pandemic

How to Be Disabled in a Pandemic

Name: How to Be Disabled in a Pandemic
Author: Mara Mills
ISBN: 9781479830886

Edited by Mara Mills, Harris Kornstein, Faye Ginsburg and Rayna Rapp

Afterword by Judith Heumann

Foreword by Ed Yong

Published by: NYU Press

Imprint: NYU Press

39 b/w and 17 color images

Web PDF
9781479830886
Published: February 2025

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A chronicle of ableism and disability activism in New York City during the COVID-19 pandemic
How to Be Disabled in a Pandemic documents the pivotal experiences of disabled people living in an early epicenter of COVID-19: New York City. Among those hardest hit by the pandemic, disability communities across the five boroughs have been disproportionately impacted by city and national policies, work and housing conditions, stigma, racism, and violence—as much as by the virus itself. Disabled and chronically-ill activists have protested plans for medical rationing and refuted the eugenic logic of mainstream politicians and journalists who “reassure” audiences that only older people and those with disabilities continue to die from COVID-19. At the same time, as exemplified by the viral hashtag #DisabledPeopleToldYou, disability expertise has become widely recognized in practices such as accessible remote work and education, quarantine, and distributed networks of support and mutual aid. This edited volume charts the legacies of this “mass disabling event” for uncertain viral futures, exploring the dialectic between disproportionate risk and the creativity of a disability justice response.
How to Be Disabled in a Pandemic includes contributions by wide-ranging disability scholars, writers, and activists whose research and lived experiences chronicle the pandemic’s impacts in prisons, migrant detention centers, Chinatown senior centers, hospitals in Queens and the Bronx, subways, schools, housing shelters, social media, and other locations of public and private life. By focusing on New York City over the course of three years, the book reveals key themes of the pandemic, including hierarchies of disability "vulnerability," the deployment of disability as a tool of population management, and innovative crip pandemic cultural production. How to Be Disabled in a Pandemic honors those lost, as well as those who survived, by calling for just policies and caring infrastructures, not only in times of crisis but for the long haul.

Judith Heumann (Afterword by)
Judith Heumann (1947-2023) was an internationally recognized disability rights activist, widely regarded as one of the leaders of the Disability Rights Movement. Judy worked in the Clinton and Obama Administrations, as an advisor at the World Bank, and as a Senior Fellow at the Ford Foundation. Her story is featured in the Oscar-nominated documentary Crip Camp: A Disability Revolution (2020) and her book, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (2020). She continued to be active until her death at age 75 on March 5, 2023. See https://judithheumann.com/
Mara Mills (Editor)
Mara Mills is Associate Professor in the Department of Media, Culture, and Communication at New York University. Mills is cofounder of the NYU Center for Disability Studies and coeditor of Crip Authorship: Disability as Method.
Harris Kornstein (Editor)
Harris Kornstein is Assistant Professor of Public and Applied Humanities at the University of Arizona. They have published research and essays in Surveillance & Society, Curriculum Inquiry, Wired, and others.
Faye Ginsburg (Editor)
Faye Ginsburg is Kriser Professor of Anthropology at New York University. Ginsburg is cofounder of the NYU Center for Disability Studies and author of Contested Lives: The Abortion Debate in an American Community and coauthor of Disability Worlds.
Rayna Rapp (Editor)
Rayna Rapp is Professor Emerita in the Department of Anthropology at New York University, and the author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America and coauthor of Disability Worlds.
Ed Yong (Foreword by)
Ed Yong is a science writer. For his coverage of the COVID-19 pandemic, he won the Pulitzer Prize in explanatory journalism, among other honors. He is the author of two New York Times bestsellers: I Contain Multitudes, and An Immense World, which won the Carnegie Medal for Excellence in Nonfiction.

An exciting, deep, and moving contribution to Disability Studies. How to be Disabled in a Pandemic is a model for real-time pandemic theorizing that includes the most affected—as subjects, interlocutors, collaborators, and authors. This eloquent record of the brutal first years of Covid is set in its early epicenter of New York City. The holdings and methods of this impressive anthology will inform the ways we continue to engage with the critical connections between Covid, illness, disability, and place in the future. ~Alexandra Juhasz, Brooklyn College, CUNY

So many forces want us to forget about the pandemic, to say that it’s over and not a concern anymore. How To Be Disabled in a Pandemic documents the wisdom of disabled oracles who resisted and challenged the system during the first three years of the pandemic in New York City. After reading this book, it’ll leave you wondering what could have happened if our ableist society centered disabled people and took them seriously. ~Alice Wong, author of Year of the Tiger: An Activist’s Life

Captures the history and textures of our present moment during the ongoing COVID-19 pandemic, using the best ethnographic tools to take us into New York City’s most impacted spaces and communities. In the process, How to be Disabled in a Pandemic opens up new paths of inquiry about chronic illness, institutional violence, accessibility, and mutual aid. A must-read for disability activists and scholars. ~Aimi Hamraie, author of Building Access: Universal Design and the Politics of Disability

Required reading for anyone who wants to understand the impact of COVID-19 in the United States. To be living with a disability in this country is to be a disposable person in the eyes of the state, even with the rights struggled for by generations of people living with disabilities. Over the past half-decade, New York City and the US implemented policies that made life more dangerous for disabled people, but disabled communities, of which there are many, figured out ways forward together to fight for their own survival—they will not be silent. ~Gregg Gonsalves, Yale University

This volume chronicles the experiences and activism of disabled people in New York City during the COVID-19 pandemic and includes contributions from scholars, writers and organizers. ~Ms. Magazine