But after news of the announced closure of the Polk Center, which employs 700 people who receive state employee wages and benefits, AFSCME Council 13 posted a picture on Twitter of employees holding signs reading “Disabled Lives Matter” and “They don’t want to leave. Ask them!” Another union chapter, UFCW Local 1776 KS, posted an image of its members outside the State Capitol with their fists raised. It was a demonstration of solidarity with their fellow workers — but not with people with disabilities.
This was hardly the first time unions have aggressively opposed steps that would allow people with disabilities to live with their loved ones. They rallied in Washington state when disability rights activists pushed to close the Fircrest School in 2017 and are still fighting to keep institutions open in New York state.
Labor and disability rights activists, two core blocs in the progressive coalition, often find themselves at odds, because it turns out that unions’ interest in keeping their members’ good-paying jobs conflicts with the interests of one of society’s most vulnerable populations — people with developmental disabilities and significant mental-health conditions.
Since the 1970s, AFSCME and other unions have repeatedly fought the closure of state hospitals, asylums and other large congregate settings that in many instances have harmed people with disabilities. These institutions, though well-meaning, are tied to an outdated paradigm about disability. In 1897, the Polk Center became the first state-run institution for disabled people in Pennsylvania. But the rise of the eugenics movement in the early 20th century turned places like the center into instruments to weed out the “feebleminded” and others deemed “unfit.” Many residents were sent as children and were never even given a chance to try to function in normal society. It’s no wonder the Polk Center was rife with abuse and mistreatment: In the 1970s, children were kept in cages and tied to benches. In 1999, six doctors were arrested and charged in the deaths of three patients and the mistreatment of dozens of others, which included stitching up lacerations on 21 patients without anesthetic. In the past two years, officials launched investigations into claims of sexual assault and abuse.
This problem is not unique to the Polk Center. Any setting with people who have limited abilities to communicate and staff who have complete control over their daily lives is dangerous. For example, a 1994 study of people with developmental disabilities in Connecticut showed that 87 percent of the abuse and neglect cases over a five-year period happened in institutions and group homes, as opposed to in a person’s own home. California announced plans to shutter its last institutions in 2018 after years of preventable deaths, covered up under claims of medical privacy. In March, the federal government ordered portions of the Rainier School, one of the last institutions in Washington state, to partially shut down after a government report concluded the school was failing to engage in “active treatment” with residents.
The unions frequently assert that some people are too disabled to live in the community and require institutionalization. On AFSCME Council 13’s website, local president and Polk Center employee Tammy Luce says: “I don’t believe a lot of the residents would survive the change into a so-called ‘community-based setting.’ A lot of them are very fragile.” Meanwhile, unions often couple with pro-institutionalization groups such as VOR to claim they have the support of parents. But groups like VOR are in the minority, with almost every mainstream disability rights organization supporting deinstitutionalization.
Those labor unions are not paying attention to the national trend. Only four of Pennsylvania’s 25 state hospitals remain. Nationwide, the number of people with intellectual and developmental disabilities in institutions has shrunk from about 180,000 in the late 1960s to a little less than half that number. That figure will shrink as states continue to move toward home- and community-based care.
Unions say home- and community-based services are a form of privatization that undermines labor and delivers fewer services to the detriment of patients. AFSCME describes deinstitutionalization as “yet another way to push the responsibility for service and funding into the private sector.” But the Association of University Centers on Disabilities, where I used to work, examined 36 studies of outcomes for almost 5,000 people with intellectual disabilities and found that an overwhelming majority of the studies showed positive outcomes for those who moved from institutions to community living settings.
There is nothing inherently wrong with labor groups supporting the interests of their members, but there is potential for a truce between these workers and disability rights activists, because home-care workers are some of the lowest-paid workers in the United States. Half of home-care workers are people of color, and a quarter are immigrants. Service Employees International Union (SEIU) has pushed to unionize home-care workers for better wages.
Disability groups such as the Arc are largely on board with the idea and gave a congressional briefing recently advocating for higher direct-support worker pay. There is a 46 percent national turnover rate for home-care workers. More than a third leave their positions in less than six months. This seriously affects the quality of care and support that people with disabilities receive. There’s a burgeoning opportunity for labor and disability rights advocates to support each other, for new solidarity in different progressive circles, if only advocates reach for it.