Freedom for Some Is Not Freedom for All: COVID-19, Institutions, and Disability Rights
By Alice Wong. First published on the Disability Visibility project website.
Freedom for some is not freedom for all. As a high-risk disabled Californian staying at home in San Francisco, I am not jealous that people are enjoying bars, beaches, and parks. I am angry seeing so many people outdoors not wearing masks or social distancing. As various cities and states begin to ease their shelter-in-place restrictions, I fear for the millions who will be left behind.
The public is incredibly eager to get back to “normal” as thousands of people continue to die in congregant settings and institutions such as nursing homes, detention centers, prisons, shelters, and psychiatric, residential, and other long-term care facilities, out of sight, out of mind. I am perplexed by the lack of urgency in response to people trapped in institutions and congregate settings who face maximum risks with minimal protections. Many are my disabled kin — they are part of the disability community segregated and isolated in the name of “safety” and “care.”
One of the first widely-publicized COVID-19 outbreaks happened at a nursing home in Kirkland, WA, with 142 cases and 35 deaths from February to March. As of June 4, over 43,725 people in long-term care facilities died from COVID-19 in 40 states, with New York reporting the highest number: 6,237 according to the Kaiser Family Foundation. All of these numbers come with names, faces, and families, not just body bags. What number will be high enough for people to care? This is a complete political and moral failure.
The federal government is considering rolling back infection control requirements in nursing homes, which prevent or stop the spread of infections with procedures such as having standard practices on hygiene and handling equipment. A 2017 analysis of nursing home data by the Kaiser Family Foundation reported at least 40 percent of the nursing homes had at least one infection control deficiency that year.
At least 18 states have laws or governor’s orders that protect nursing homes from lawsuits and/or criminal prosecution related to the pandemic. New York and New Jersey so far are the only two states to provide immunity to corporate officials from the nursing home industry from civil lawsuits and some forms of criminal prosecution. Governor Gavin Newsom received a request in April from a group of hospital and assisted living lobbyists for a sweeping Executive Order granting broad immunity from civil and criminal liability objected by advocates from the disability community.
Governors need to launch investigations into outbreaks at all congregate settings, mandate reporting of infections and deaths, enact universal testing for all workers and residents, provide adequate personal protective equipment, increase wages and protections for workers, and deny the nursing home industry the legal immunity it is demanding. In a May 6, 2020 video featuring the late Stacey Park Milbern, a disabled activist and a founder of the Disability Justice Culture Club, she warned:
There has to be checks and balances on hospitals and nursing homes. Otherwise, disabled people, especially people of color, are left alone in a system that already doesn’t care about us.
Congregant settings do not ensure safety or care. By design, institutions do not allow us to know about the conditions of the people incarcerated inside. They are allowed to operate without transparency and accountability. They render people as less than human, subject to exploitation, abuse, and neglect.
Repost from June 7, 2020. Link to original post.
About the Author
“Alice Wong (she/her) is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project, a community partnership with StoryCorps and an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Alice’s areas of interest are popular culture, media, politics, disability representation, Medicaid policies and programs, storytelling, social media, and activism. She has been published in the New York Times, Vox, PEN America, Catalyst, Syndicate Network, Uncanny Magazine, Curbed SF, Eater, Bitch Media, Teen Vogue, Transom, Making Contact Radio, and Rooted in Rights. Currently, Alice is the editor of Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology of essays by disabled people, available now by Vintage Books (2020).”
Bio excerpted from The Disability Visibility Project where you can find more information about Alice’s work here.
You can follow The Disability Visibility Project on Twitter @SFdirewolf @DisVisibility and Instagram @disability_visibility
