A call to chronicle the horrors of Mass. state hospitals

Bill would form commission to study painful part of state's history

IT STANDS AS a particularly horrible chapter in the state’s ongoing struggle to ensure adequate treatment for those with mental health issues and other disabilities. Beginning in the 19th century, Massachusetts built a network of state-run institutions for people with developmental and mental health disabilities. By the 1970s, thousands of Massachusetts residents were housed in more than two dozen hospitals, schools, and farm colonies, where patients were subjected to shocking human rights abuses, including the practice of eugenics and forced sterilization. 

The deinstitutionalization movement, which started to gain traction in the 1960s, eventually led to the phasing out of state-run institutions in favor of community-based and at-home treatment. But the scars and trauma of state hospitals and other institutions remain — haunting past patients and their families. 

On Monday, mental health disability advocates testified before a legislative committee in support of a bill that would establish a commission to study the history of mental health institutions in Massachusetts. 

“There seemed to be a real injustice here, and there seemed to be lives crying out to be acknowledged,” said Sen. Michael Barrett, a Lexington Democrat, who crafted the bill and is co-sponsoring it with Rep Sean Garballey, an Arlington Democrat. 

A combination of new drugs for treating mental illness, an increasing awareness of patient abuse at state institutions as well as emerging alternative models of care, and shifts in how federal funding was allocated led most state facilities to close. Few state-run institutions remain in Massachusetts, but as these facilities faded from use, so did their histories and the records of the patients who lived and died there.

The inspiration for the bill to study that history was a recent project by students at Gann Academy, a Jewish high school in Waltham. 

In 2019, under the guidance of Harvard Kennedy School lecturer Alex Green, the students began researching and writing short biographies of 298 people who died in state institutions and were buried in graves marked only by a number. 

Barrett, whose district includes Waltham, saw the student project and reached out to Green to help him craft the bill. The legislation, which was heard by the Joint Committee on Mental Health, Substance Use and Recovery, proposes establishing an 18-member commission responsible for compiling and preserving records related to the history of Massachusetts institutions for people with developmental and mental health disabilities. It would work to identify known and unknown burial locations of former patients who were often placed in unmarked graves, and would break down barriers preventing family members from accessing past patient records.

Commission members would be appointed based on personal connections to the facilities and professional experience and would include a former resident of a state institution and three community members designated by various public officials.

To Green, who had his own painful experience being treated at a city hospital many years ago, the time was right for this type of initiative. He said at Monday’s hearing that the disproportionate impact of the coronavirus pandemic on people with mental health disabilities was a stark reminder of the persistent shortcomings of the state’s health care system.

“The ruthlessness of the way in which the virus has cut down our communities, specifically told us that the systems we’ve inherited from the past are still present. The ethics from the past are still present enough where we really need to re-evaluate how all of this is set up,” said Green. He said that understanding the history of state institutions is the first step.

Green said other recent events also highlight just how little awareness exists around this history. He cited the controversy that erupted last Christmas when the Waltham Lions Club hosted a holiday light show on the grounds of the former Walter E. Fernald Developmental Center.

The center was the first publicly funded institution in the country to serve people with developmental disabilities and has a history of human rights abuses, including an experiment in which children were fed radioactive isotopes. Green and others decried the use of the site of such atrocities for a holiday light display. “The desecration of these sites gave us all a sense that, within disability communities, we may know parts of these stories, but outside of it most people don’t anymore” Green told lawmakers.

Pat Vitkus, whose husband spent most of his childhood at Belchertown State School, said she wants the commission established so people can learn where their relatives were buried and to ensure that past abuses are not repeated. “My fear is that we end up back with the abuse that happened there before,” she said, explaining that her husband’s time at Belchertown was “absolute torture” and that it impacted his life beyond the school as well.

David Scott described what it is like for relatives of deceased patients not to know what their family member went through. His brother, who was born with spina bifida, spent 17 years at a state institution after the state determined his parents were too poor to provide his necessary medical care.

His brother died before his 18th birthday, and as Scott began to learn more about the treatment of some patients at state facilities, he wondered what his brother endured. Without access to medical records, he may never know. “If we can’t have the records as families, then we can never have closure,” he said.

Barrett said he wants to identify burial sites on the grounds of more Massachusetts institutions and acknowledge as many lives as possible. He said he also hopes for a better understanding of the history of institutionalization by journalists, historians, and patient family members.

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With the shift from large, state-run institutions to in-home and community-based care for mentally disabled residents, Barrett said he’s less concerned about a repeat of the horrific institutional practices of the past and more focused on unpacking and remembering a lost history. 

“This is, first and foremost, about doing justice by thousands of hidden lives that were lived in state schools for developmentally disabled people and state hospitals for the mentally ill,” he said