Across Massachusetts, there are thousands of unmarked graves holding people who lived and died in the state institutions that housed people with mental, intellectual and developmental disabilities beginning in the mid-1800s. Many of the residents are buried in cemeteries that are deteriorating and unmaintained.
And because of how the state handles records from those facilities, thousands of family members don’t know where their loved one is buried. Like David Scott, whose brother John died at age 17 at the Fernald School in Waltham. Scott and his siblings spent 50 years not knowing where his brother’s remains were.
The findings about unmarked graves are part of a newly released report from the Massachusetts Special Commission on State Institutions, which investigated how the state has mishandled decades of public records relating to disabled residents who lived in state institutions.
The two-year investigation commissioned by the Massachusetts legislature found that the state has put up too many barriers — some intentional and some unintentional — to accessing institutional records by citing patient privacy, preventing family members, scholars and former residents themselves from fully reckoning with this hidden history.
Alex Green, vice-chair of the commission and scholar of disability history, said the report is a historic step forward in unearthing stories rarely told. “I think that there’s a massive ongoing act of erasure happening about one of the most significant and overlooked human rights tragedies in the history of this state and the country,” he said.
“It [the report] really gives us a devastatingly personal sense of how the state turned the idea of care into a much darker thing that harmed a lot of people,” Green said.
The report found that one third of the state’s burial grounds for people who died in institutions are not being maintained and more than 10,000 burial sites are in cemeteries that are deteriorating, most of them anonymous. The report calls on the state to formally investigate and locate those unmarked graves.
The commission is asking for a formal apology from Governor Healey for how the commonwealth treated its institutionalized residents.
“We want an unequivocal statement from the governor that says that she hears disabled people first and foremost when we say this is wrong. And it was wrong, and it needs to change,” Green said.
Secretary of the commonwealth Bill Galvin has previously told GBH News that he would like family members to access those records, yet his hands are tied — he cannot approve release of documents from these archives because of laws around patient privacy and medical records. His office told GBH News this week that he does support reforming the laws.
In a statement, a spokesperson from the Executive Office of Health and Human Services said it is committed to helping people with disabilities live healthy lives in their communities.
“But there is a tragic and deeply disturbing history to this work that we are still reckoning with as a state and society. Over the past few years, we’ve redoubled our efforts to work with families, advocates and others to improve access to records and honor the memories of those who resided at state institutions,” the statement read. “We look forward to reviewing the Commission’s report as we continue our work, guided by advocates, families, and people with lived experience.”
Personal records
The commission, made up of disability advocates, scholars and policymakers, was formed in 2023 by the legislature to investigate the legacy of institutionalization in Massachusetts. Members say it’s the first time that a commission made up of majority-disabled people has undertaken this work. Many of the members have personal experience being institutionalized.
The report found that families who have tried to access records have had to endure a lengthy process, with legal and financial barriers. The documents are held by state agencies, university libraries and in private collections, and some have been destroyed by fires or accidents and subject to vandalism.
For some, the past is not so distant. Evelyn Mateo, who served on the commission, grew up in state custody, being shuffled between foster care and state hospitals in the 1980s and ‘90s. She was misdiagnosed with a mood order that was actually trauma from years of childhood abuse.
“I was mistreated. And my rights were violated as a person,” she told GBH News. “I felt like I was forgotten, myself, in society.”
Her memory is hazy because of the mistreatment, but she remembers being restrained, strapped to boards and left for long stretches in a dark isolation room.
Mateo was doing an internship at the Department of Mental Health when she discovered that the state was holding documents about her past.
“I started reading and I was just devastated. I was shocked,” she said. “I didn’t know the details.”
She found out personal information like where she lived, what programs she had been enrolled in, what medications she had taken, which family members did or didn’t visit her and that she had been diagnosed with a learning disability.
She wants to get more of her files so she can understand long-term side effects from being heavily medicated for so long.
It’s also personal for some lawmakers. At a recent meeting of the commission, State Sen. Mike Barrett shared that his great grandmother, who had 12 children, spent 20 years in Northampton State Hospital, which for years was a “closely-held family secret.” Several cousins have recently asked if he has any more information about her time there.
“What you can’t find is any indication of the missing two decades of her life when she was absent as a mother and had to leave her kids to their own devices in Worcester, Massachusetts,” he said.
Looking forward
It makes sense for Massachusetts to publicly address this history, members of the commission said. The country’s first public institution to care for disabled people was The Walter E. Fernald Developmental Center in Waltham, originally named the Massachusetts School for Idiotic and Feeble-Minded Youth.
“It can be said pretty easily that Massachusetts is responsible for having both created this network of mass institutionalization nationwide and propagated it and supported it for nearly two centuries,” Green said.
The Fernald opened in 1848, and it later emerged that some of the young residents were unknowingly being used in a Harvard/MIT experiment to test radioactive tracers, for which President Bill Clinton later apologized in 1995. The governor of Massachusetts has never issued an apology.
The commissioners hope the report is an impetus for legislation that will reform public record laws, and make other changes to how the state handles sensitive documents to make it easier for families to access these records.
The report also calls for Massachusetts to publicly memorialize the history of institutionalization and incorporate more disability history in schools. Anne Fracht, co-chair of the commission, said she would like to see a public museum, either virtual or in-person, where people could learn about how people were treated and family members could look up their loved one.
“What’s happened in the past is part of history. People’s lives count, and people should learn from our history,” Fracht said. “And not forget it and not repeat it, most of all.”
