by Saffron Forsberg
Arts + Culture Editor
[originally published October 2021]
“Right now, we’re outside of the Hart Senate building protesting, trying to get Senator Joe Manchin to support the Better Care Better Jobs Act, which would help provide funding for home- and community-based services, for personal care attendant wage increases and benefits, and for integrated and affordable, accessible housing,” disability rights activist Lydia Nunez Landry tells me on Thursday afternoon. She’s rolling in her powerchair as she speaks to me over the phone while I hear the warble of fellow activists in the background. By this time, they’ve been on the ground for almost a week, subsisting on independent fundraising, mutual aid, and peanut butter sandwiches. After nearly two years of COVID-19 mistreatment, and an age-old fight for disability justice, members of ADAPT—those often credited with helping to pass the Americans with Disabilities Act (ADA)—are rightfully fed up.
Nunez Landry, a bold voice in national disability justice—particularly in relation to issues of anti-institutionalization and abolition—is an organizer part of Gulf Coast ADAPT, a chapter of the larger National ADAPT, a grassroots organization fighting for the rights of disabled people in the United States. She also worked as a long-term care ombudsman in the Gulf South for many years, where she fought against the abuse and neglect faced by disabled and aging people in nursing facilities every day. Texas, where Nunez Landry is based, is one of the worst states in the country to be both a disabled person and a care attendant. The hourly pay for a full-time personal care attendant is the minimum wage—a little over $8.00. Disability and workers’ rights organizations, and affiliated unions, across the country are trying to bump this to at least $15 an hour. It’s a step in the right direction.
The week of October 3rd, ADAPT activists from 15 states, along with The National Domestic Workers Alliance, the Service Employees International Union (SEIU), The Autism Self-Advocacy Network (ASAN), Justice In Aging, Caring Across Generations, and Be a Hero, held protests and a vigil for victims of COVID-19 mistreatment, and nursing home abuse and neglect, outside the nation’s Capitol and the Hart Senate Office Building. This wide array of organizations have one common goal: trying to get senators Joe Manchin and Kyrsten Sinema (D) to vote in favor of the Better Care Better Jobs Act. The passage of this bill would be hugely impactful for not only disabled people and survivors of institutional mistreatment, but also those employed in the care sector. “The vigil was Wednesday and Thursday, all night. And we spent the night out there. That was held at Union Square, across from the Capitol,” Nunez Landry tells me.
On Tuesday, October 5th, Nunez Landry and many fellow activists were put into custody outside the Capitol. Though they are now safe and free on bail, the arrests call into question who is allowed to resist in this country—perhaps even who is allowed to be seen outside the nation’s Capitol. The answer being: not significantly disabled, low-income BIPOC in wheelchairs. “The arrests seemed really unwarranted because we weren’t blocking all the doors. They told us if we didn’t disperse, we would get arrested. Many people tried to move...but y’know, it’s kind of hard to move with all these powerchairs and people going slow. So then they hauled in the cavalry—I mean it was ridiculous—they probably had like thirty officers...it was almost like there were more cops arresting us than there were [arresting “alt-right”] insurrectionists at the nation’s Capitol.”
There’s a reason activists are so adamant about passing this bill, willing to put themselves in danger. Nunez Landry tells me its impacts are far-reaching. “This is huge for physical and human infrastructure. If this passes it will be on par with the New Deal,” says Nunez Landry. “It’s very comprehensive. It really focuses on the needs of BIPOC and women and disabled people.” Such is the case because many of the jobs the bill would assist are those most often performed by working-class Women of Color. Insofar as ADAPT and their affiliated organizations and unions are addressing gross human rights violations, they are also addressing the grave and ever-widening socioeconomic class divide in this country. The intersections of disability injustice, gentrification, and, in effect, institutional poverty, are not difficult to locate. Most significantly disabled people in the United States are low-income, and many live in poverty. Their personal care attendants are much the same. This bill assists disabled people, but it also assists non-significantly-disabled POC and those performing underpaid, undertrained “pink-collar jobs.” To Nunez Landry and her fellow “ADAPT-ers,” better pay and treatment for personal care attendants could mean safer working conditions, a step toward class justice, and thus, better treatment interpersonally between disabled people and their aids.
“A lot of ADAPT activists are People-of-Color. We even have some immigrants. But, for the most part, we’re all living in poverty because SSI benefits are ridiculously low. People are trying to live on $800 [a month] when rents are over $1000,” says Nunez Landry.
I ask about employment in the paid workforce in relation to disability. Nunez Landry, as well as most of her fellow activists, are unemployed in the traditional workforce. Most cannot drive. And, because of gentrification, many do not live in safe, accessible, “walkable” cities. “There are a lot of us here who are significantly disabled and, because of employment discrimination and an unwillingness to accommodate our needs, we can’t get jobs,” she says. “Like, in my situation, how am I supposed to get to work when there’s no access to public transportation? Or, in areas where there is public transportation, America’s infrastructure, like our sidewalks, are crumbling so much that you can’t even traverse the sidewalks.”
“[Additionally,] in the United States now, there are these huge real estate corporations that are buying up all the housing and driving up the costs. And some of these real estate corporations are also owners of nursing homes. So here you have people unable to afford accessible housing, and so they’re thrown in a warehouse [institution].” Says Nunez Landry.
Indeed, nursing homes and other institutions are created to profit off physically, mentally, and psychiatrically disabled people. Private and public institutions, like prisons, often act as mass-housing for the poor in the United States. Institutionalization is a hugely profitable business model run by only a handful of powerful corporations.
“These corporations and lobbyists...they’re colonizing the bodies of disabled people for insurance, Medicare, Medicaid, and government benefits.” Nunez Landry explains. “It’s way cheaper to support home- and community-based services than it is to keep dumping money to these huge nursing home conglomerates, where their money is being funneled into Shell corporations, and there’s no financial responsibility or transparency...I’ve been working with healthcare economists—I won’t mention their names—and they’ve been looking into their finances...and they’re not losing money. They have a lot of money, they’re just not giving it to the people.”
“So, right now, there is what is called a Medicaid institutional bias. And that means that Medicaid dollars automatically go to putting people in nursing homes and institutions, but they’re like 10-15 year waiting lists for home- and community-based services. So it’s optional for states to even provide home- and community-based services. They don’t have to. So we’re trying to end the Medicaid institutional bias...that money, rather than go to these huge, predatory nursing home corporations should go to the consumers, so we can live in our own places.”
So why are nursing home corporations so powerful? How are they so influential politically? The answer lies in powerful lobbyists and oil companies. “Diversicare Inc. is one of the rather small number of publicly listed nursing home chains. For the most part, it is a ‘failed company’ due to poor management. This corporation was on the brink of bankruptcy until generous federal and state COVID subsidies breathed new life into it.” Writes activist David Kingsley on his blog Tallgrass Economics. “The public is fed several myths about the fundamental nature of government-funded long-term care in the United States. The myth that providers are operating in a competitive, free-market, system drives the propaganda disseminated by trade associations such as the American Health Care Association/National Center for Assisted Living (AHCA/NCAL)...Wall Street and its affiliated trade associations (e.g., AHCA/NCAL) distribute immense amounts of money to legislators to maintain the highest prices for the least amount of care in skilled nursing facilities...In the 2018 cycle, the AHCA/NCAL PAC distributed $610,616 to federal candidates. Democrats received $401.616 (65.77%) and Republicans received $209,000 (34.23%). The top recipients of the industry’s patronage are some powerful legislators.”
“The nursing home industry receives hedge funding, receives tax breaks...they got over 20 billion dollars in COVID-relief funding.” Nunez Landry explains. “In some places, they even sent in the National Guard because they [nursing institutions] wouldn’t hire enough staff. Now, nursing homes say they can’t find enough staff. Well, of course not. You can’t find staff if you’re only going to pay them the minimum wage and overwork them...you have one staff person to twenty significantly disabled people and you’re paying them a pittance of a wage! Of course you’re not going to be able to keep them. So they want taxpayers to subsidize the cost of them doing business; they want us to subsidize their workforce. Meanwhile, families are caring for loved ones without pay, which means many of them have to drop out of the workforce. And so you have people living in abject poverty.”
If one has no experience or knowledge of the impacts of institutionalization, this can seem like a lot of information to digest at once. Are nursing homes really that harmful? Even that nice one my grandmother lives in right now? Nunez Landry and her fellow institutional abolitionists say so. “186,000+ disabled people died in solitary confinement, in substandard institutions, across the United States [this year].” She says matter-of-factly. “For years and years, there have been congressional hearings and testimonies talking about the lack of infection control practices, neglect, and abuse in these facilities, rape, dangerous understaffing, drugging people against their will with powerful anti-psychotics when they’re people who don’t even have psychiatric disabilities.”
Institutionalization, especially for the aging population, is often forced or coerced. “This is a human rights issue. Nobody wants to live in a nursing home. We’re socially removed from our families and communities, segregated. We experience a social death; people find them too disquieting and dreary to come visit us. And we just don’t want to live there. We want to live in our own homes and communities.” Says Nunez Landry. “And, you know, I’m here. There are people here who have children. One ADAPT activist...was put in a nursing home! And she has children!” The impacts of institutionalization—whether that be as a physically disabled person, a person with psychiatric or cognitive disabilities, or a member of the ever-expanding aging population—are not often spoken of. Deaths go unrecorded, and abuse is shrugged away. These, too, are not isolated incidents, but grave realities for those with significant disabilities. Grassroots activists like those in ADAPT, disability justice organizations, and workers’ unions, are trying to make the United States a better place to be a person with disabilities.
Special thanks to Gulf Coast ADAPT, National ADAPT, and organizers Rhoda Gibson, Latoya Maddox, Josue Rodriguez, Lydia Nunez Landry, Mike Oxford, Nancy Salandra, and Allison Donald.