WALTHAM, Mass. — Dave Scott sobbed as he stood in the middle of a Waltham cemetery dotted with brick markers — not tombstones — differentiated only by numbers and not names, mourning the loss of his brother who he said was interred there in the absence of human dignity.
Scott called himself his brother’s keeper.
His brother John was born in 1955 with spina bifida, and Scott describes his institutionalization at the Metropolitan State Hospital as akin to a kidnapping.
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The hospital is now a shuttered institution, along with the adjacent Fernald State School, where hundreds of people with intellectual or developmental disabilities, as well as mental illnesses, endured abuse for decades amid the height of the eugenics movement.
“He was put in the bowels of hell,” Scott said recently at MetFern Cemetery, located about a 10-minute walk from a nearby road, off a rocky trail within the Beaver Brook North Reservation. John passed away when Scott was just 7 years old.
“I never really got a chance to know him, but nonetheless, he is my brother to this day,” said Scott, who lives in Brockton. “It almost to me seems like an unsolved homicide … my brother died of edema and pulmonary heart — that’s a sign of abuse, edema, and everybody knows that. His colonoscopy bag was always filled; it was never empty. He always smelled; he was never kept right.”
Hamstrung by a lack of available state records detailing the fate of his brother, Scott struggles to find closure. For years, he’s remained brokenhearted, agonizing over how John may have suffered.
But that could soon change with the creation of a new special disability-led commission, forged through a policy item embedded into Massachusetts’ fiscal 2023 budget, charged with researching the history of state institutions.
Seventeen commissioners — appointed by the governor, other elected officials and disability rights advocacy organizations — will pore over existing records, examine barriers to accessing other personal documents that may be shielded by long-standing privacy laws, and investigate the likely locations of unmarked graves at former state institutions.
The commission, backed by a $145,000 budget appropriation, will also explore ways to educate the public about the history of deinstitutionalization and the civil rights movement to include people with disabilities into society, among other information. It must submit a report with findings and recommendations to lawmakers by June 1, 2025.
All human beings are imbued with a story that makes them unique, said state Rep. Sean Garballey, who helped champion the legislation on Beacon Hill. But not all people, particularly those who were admitted to state institutions and stripped of their individuality, share in that privilege, he said.
“They have a cemetery that’s not marked — that’s just briefly marked that doesn’t share who they are, doesn’t share their identity,” said Garballey, an Arlington Democrat. “And there are thousands of stones like this from here to Belchertown, all across the commonwealth. This is a difficult history … these are difficult conversations, but we need to have these difficult conversations as a people.”
That type of work is already underway at MetFern Cemetery, where students from the Gann Academy in Waltham have published digital biographies — culling together census records, birth certificates, marriage licenses, immigration records and death certificates, among other documents — to shed light on the unmarked graves.
Yoni Kadden, chair of the academy’s history department, said American history is steeped in a myth that people who work hard enough can be successful, yet the tale omits what happens to individuals with disabilities.
“Let’s start telling a story about what it means to have ability, what it means to have disability in this country,” Kadden said. “That is the true and full and complete story of this country. This cemetery right here is symbolic of the erasure of that American story.”
MetFern Cemetery is split into two sections for Protestants and Catholics, with local congregations taking care of Jewish burials elsewhere. Attendees of a solemn ceremony last month to recognize the Special Commission on State Institutions gingerly walked among the graves, placing flowers atop the brick markers.
To Health and Human Services Secretary Marylou Sudders, the burial grounds were familiar.
She served as the last superintendent of the Metropolitan State Hospital on “the heels of terrible patient abuse,” working alongside Gov. Charlie Baker — who, at the time, was undersecretary of Health and Human Services in the Weld administration — to shut down the facility.
As Sudders read investigations about the hospital, she said it was hard to imagine the “hideous” abuse against patients experiencing mental illness and “the complicity of silence that occurred.” Meanwhile, students at the Fernald State School were subject to experimentation, such as MIT scientists feeding them radioactive oatmeal as part of a Quaker Oats study.
“My guess is the administration wanted to close the facility to save money, but I really wanted to close this facility because there were more than half of individuals in this hospital that were ready and deserved to live in the community and have all the rights that the rest of us have in the community,” Sudders said. “It was very important for me that this (MetFern) remains sacred, and I had this worry that it would be plowed over — not over any intent, but just in the development by three municipalities.”
State Sen. Mike Barrett, who also spearheaded the legislation for the special commission, recalled his college years in the 1960s, when a mentorship program brought him to Fernald to play with a 6-year-old boy. Barrett struggled to understand why the boy, who appeared to have no cognitive defects, was at the school, surrounded mostly by older adults.
“His story and the story of everyone with whom he lived hasn’t been told. We don’t know, even to this day, much about the lives that were lived,” Barrett said, drawing an analogy to The New York Times’ 1619 project that reminded “all of us that we don’t really know our own history as a country, or as a state, or as a community.”
“The truth here has eluded us,” Barrett, a Lexington Democrat, said of Fernald.
Scott, whose brother is buried at MetFern, yearns deeply for the truth. Meanwhile he says his siblings — wary of the past, echoing their parents who never spoke about the topic around the dinner table — urge him to focus on “happy thoughts.”
“I can’t do it,” said Scott, who’s tired of the bureaucratic obstacles blocking his path to details beyond John’s death certificate. “There has to be a record of my brother.”
“Back then, it was different times — everybody knows it was different,” Scott continued. “But there was no reason to do what they did to children who needed more help, adults that needed help, that are buried here.”
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