From climate change to housing, Governor Maura Healey is already laying the groundwork for ambitious proposals that will define her administration. But if she hopes to fully realize their promise, she must reject the longstanding exclusion of disabled people from the creation and implementation of policies that will reshape our Commonwealth.
Consider the sheer number of us who live in Massachusetts. In 2019, nearly 800,000 of the state’s 6.8 million residents identified as having a disability. Based on recent Centers for Disease Control and Prevention estimates, it’s safe to assume that more than 425,000 residents now have long COVID, though an accurate count of mental illness in the population is incalculable. Even with overlap between these figures, disabled people probably number more than 1 million.
But above and beyond our number, no population depends more intimately on state services, and the degradation many disabled people experience daily is indicative of policies and practices that are reactive and dated because they were developed without us.
Thousands of disabled people, young and old, spend their days living in miniature versions of the state’s once-vast network of institutions. As a recent lawsuit filed by the Center for Public Representation notes, many people do not want to live in nursing facilities but they are kept there (at the expense of fundamental liberties) for financial reasons. And the workforce that can support them in the community, including personal care assistants, is chronically underpaid and hollowed out.
Pre-pandemic unemployment among disabled people hovered well above 50 percent, in itself a huge challenge, and one that is compounding the difficulties already stemming from the state’s housing crisis. Each day disabled families shuttle from couch to couch, car to car, shelter to shelter, deprived of the benefits that stable housing conveys on those who are rooted and secure in our communities.
This has a particularly negative impact on disabled children who have already been punished for years by public educational leaders who routinely fail them, while charter and private schools often shut their doors to them. Massachusetts ranks third in the nation for wholesale segregation of disabled students, and even getting to school has become a method of de facto segregation, since disabled kids bear the brunt of busing crises like the one plaguing Boston.
This was worsened during the pandemic’s height when policy makers embraced parents’ fraudulent claims about the connections between masks and negative mental health outcomes, enacting return-to-school policies that put the health of immune-compromised disabled kids at extreme risk. At the same time, for youth with newly emerging mental illness, these years have shown how threadbare the state’s mental health supports are. All the while, at the extremes, Massachusetts taxpayers continue to fund places like the Judge Rotenberg Center in Canton, which the United Nations has cited as a torture site for its use of shock devices on autistic children.
Other issues abound. Transportation for disabled people in this state is unreliable. Many incarcerated persons lack services for their disabilities, notwithstanding a December agreement by US Attorney Rachael Rollins on prison reform in which Massachusetts authorities acknowledged violating the Eighth Amendment rights of mentally ill inmates. Law enforcement routinely police disabled people at higher rates, and the lack of accountability for police killings of disabled people — as in the high-profile case of Juston Root — shows there is little appetite for adequately investigating these horrors or taking steps to prevent future ones.
Massachusetts is fortunate that Healey seems to understand that populist gimmicks like those of New York City Mayor Eric Adams — who has put forward a patently inhumane proposal to detain people with mental illness — are an abuse of basic human decency. In an October virtual forum hosted by disability advocacy groups, candidate Healey showed a mastery of disability issues and an understanding of the most important thing, which is that disabled people are people, which should not need saying but sadly does.
With such deep understanding, Healey can safeguard what does work better here than elsewhere — such as MassHealth. She can force government bodies like the Commission on the Status of Persons with Disabilities to centralize the state’s sprawling network of disability service agencies. By executive order, she can unilaterally reform our state records laws that hide the failures of the distant past, including unexplained deaths in institutions, trapping us in cycles of repeating past mistakes.
Formidable as these issues are, Healey can begin to chip away at them, but without a bigger change, disabled folks will continue to be held hostage by systems that would pull the rug out from under our rights at the first sign of a recession. This precarious world will continue to exist because we do not get to be seen except as a problem to be solved and we do not have seats at the table when new ideas on government policy are brought forward. Without being included from the start, the reality of Healey’s ambitions will fail, perhaps invisibly to many, but not to the million disabled people in the state.
If her transition team hires are an indication, perhaps the governor already gets this. Prominent disability leaders served on four of the team subcommittees. But real progress will take a sustained effort, deliberate at every turn, lasting all the years of her term and beyond. The upside is, if she opens the door, we will fight at her side. We are ready to do so, and the results could be something she has prized for her entire career: true equality for all citizens of the Commonwealth of Massachusetts.
Alex Green teaches at the Harvard Kennedy School and is a visiting fellow at the Harvard Law School Project on Disability.