In 2022, The Arc of Massachusetts alongside Alex Green of the Harvard Kennedy School helped lead a large coalition of disability rights advocates and organizations in the passage of groundbreaking, world-first legislation to create the Special Commission on State Institutions – a disability-led, disability-majority state commission to investigate the unresolved legacies of mass institutionalization. Some of the most significant aspects of institutionalization began in Massachusetts, and by the 1960s and 1970s, this small state had more than two dozen facilities that warehoused people with intellectual, developmental, and mental health disabilities.
The Arc was instrumental in the decades of civil action that led to the large-scale closing of most of the state’s institutions, but when institutions closed, their records were locked away, abandoned, and forgotten in ways that deprived survivors and their descendants from accessing documents, and prevented historians from reckoning with ongoing questions about human rights issues that stem from institutions in the state.
Working with Senator Mike Barrett, Representative Sean Garballey, and a host of legislative partners, The Arc’s Government Affairs team succeeded in passing this legislation with funding in 2023. The commission is charged with delivering findings on issues ranging from the identification of people buried in the nameless graves of institutional cemeteries, to inquiries about the possibility of unmarked burials, locating records scattered across the state, and understanding the challenges people face in accessing them. Perhaps most importantly, the commission will make recommendations about how the legacy of institutions should be memorialized and taught to future generations in Massachusetts, including the story of the independent living movement that grew in opposition to these places.
14 of the commission’s 17 members have been appointed. The commission is meeting regularly and it recently hired the Center for Developmental Disabilities Evaluation and Research (CDDER) at the UMass Chan Medical School’s Eunice Kennedy Shriver Center to lead the research efforts and help draft a report, which will be submitted to the Massachusetts Legislature in June 2025.
Three commission seats were reserved for individuals appointed by independent community organizations, including MassFamilies, Mass Advocates Standing Strong, and The Arc of Massachusetts. Alex Green, a Harvard Kennedy School faculty member and disability researcher with affiliations at the Brandeis Lurie Institute for Disability Policy and Harvard Law School Project on Disability, is the author of the legislation that created the commission and was appointed by The Arc to serve at its representative to the commission.
“As disabled people, we are one of the first generations to have elders who have been able to live independently. Their stories must be told, and for us to understand what they overcame, we must fully reckon with the history of institutions,” said Green, who identifies as a person with mental illness. “This is our story to tell, and for the first time, we get to lead that work in ways that will help ensure that we learn from the past and shape the future.”
By Maura Sullivan and Alex Green