Freedom for Some Is Not Freedom for All: COVID-19, Institutions, and Disability Rights
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.
This is where community-based services come in. There is a lack of imagination & political will in creating new ways to support all people
— Alice Wong (@SFdirewolf) June 7, 2020
The systems that exist now don’t have to remain the same. We must dismantle the nursing home industry that places profits over lives as they endanger their workers and operates with inadequate oversight and regulation. And we must work toward decarceration and deinstitutionalization because these systems are dangerous, inhumane, and unjust.
Disabled people for decades fought for the rights to live in the community. The 30th anniversary of the Americans with Disabilities Act (ADA) will take place this July and I think about how different my life would have been without it and the Olmstead decision, a Supreme Court ruling in 1999 that stated people with disabilities have the right to receive state-funded services in the community instead of an institution. Despite these advancements in civil rights, the struggle continues as there is an institutional bias in Medicaid funding and significant waiting lists for community-based services across states.
Disability rights are civil, labor, and human rights.
- We need to advocate for an increase in Medicaid funding of home and community-based services by supporting future pandemic relief proposals and bills such as the Coronavirus Relief for Seniors and People with Disabilities Act.
- We should urge our representatives in Congress to extend the Money Follows the Person demonstration program which helps states transition people out of nursing homes into the community.
- We also have to support policies at the state and federal level that raise the wages, benefits, and protections for domestic and home care workers who are predominantly women of color.
Safety is an illusion and privilege for the very few. Knowing that asymptomatic carriers are out in public, the time it takes to develop a vaccine or treatment, and possible changes in the virus, I will remain at home long after any orders are lifted because I simply do not feel safe. I am deeply concerned about the resurgence of institutions as the “best and only” option for people with significant medical and care needs, including those who have survived COVID-19 or continue to experience long-term symptoms.
As a disabled woman of color, my life is unavoidably high-risk. I fight to be seen while knowing I’m one infection, medical crisis, or policy change away from institutionalization or death. This pandemic lifted the veil on what kinds of people are considered “acceptable losses” in the name of saving the economy: Black, brown, indigenous, poor, disabled, older, fat, chronically ill, and immunocompromised people just to name a few.
Right now Black people are risking their lives protesting against systemic racism in the face of both the virus and state violence. Fighting for justice and liberation requires the abolition of all systems that oppress and punish us for merely existing.
No one is disposable or invisible. We can’t look away from these deaths while enjoying the sun and sand. By the 60th anniversary of the ADA I want to see older and disabled people fully integrated into the community with robust supports and services. This is my American dream; it’s a vision that requires creativity, political will, and a radical inclusive culture in how we design our infrastructure, policies, services, and programs. Freedom to live in the community is a human right. One day everyone will truly belong.