By Marianne Dhenin
This article was originally published by Truthout
The state is baring the history of generations of disabled people and the violence many faced while institutionalized.
A new Massachusetts state law passed in November 2025 will make records from state institutions for people with intellectual or developmental disabilities or mental health conditions accessible for the first time. Generations of disabled people lived and died in those institutions beginning in the mid-nineteenth century. Many experienced horrific abuse, and their histories have long been obscured.
“Our estimate is that we’ve opened more than 10 million records with this law,” Alex Green, a disability justice advocate who worked on the legislation and is also the author of A Perfect Turmoil: Walter E. Fernald and the Struggle to Care for America’s Disabled, told Truthout. “The argument is that family members have a right to see that information, know it, and safeguard it. And eventually the public does as well, so that it can understand the enormous atrocity that has occurred.”
Massachusetts operated more than two dozen schools, hospitals, and other residential facilities where individuals with intellectual or developmental disabilities and others labeled “feeble-minded” were warehoused, beginning when the institution later known as the Fernald School opened in 1848. That institution was the first public school of its kind in the Americas, and it only closed in 2014.
Tales of abuse at Massachusetts’s Walter E. Fernald State School and other state-run institutions, such as Pennsylvania’s Pennhurst and New York’s Willowbrook, helped drive a movement for deinstitutionalization in the 1950s and 1960s. Willowbrook was the subject of a historic civil rights lawsuit after a television exposé revealed to new audiences that the adults and children with intellectual and developmental disabilities warehoused there were beaten, experimented on, and deprived of fundamental rights.
Following the lawsuit and loudening demands for deinstitutionalization, Congress signed the Developmental Disabilities Assistance and Bill of Rights Act in 1975. Many institutions closed soon after, and the people who were once incarcerated in them, as well as younger generations of disabled people, have since had greater support to live in their communities.
But advocates for disability rights and justice warn that progress could be fleeting, as the harmful misconceptions and dehumanizing language about disabled people that allowed institutionalization to flourish have begun returning to the mainstream.
Recently, people in positions of power in pop culture and politics have made an effort to resurrect the “R-word,” long used as a slur against people with developmental or intellectual disabilities. The term was coined as a medical one to diagnose those warehoused in institutions like the Fernald School.
Since returning to office, President Donald Trump has matched that language with action. He has slashed funding for programs that support community living options for disabled people and led a federal push to expand civil commitment laws used to incarcerate individuals deemed unable to care for themselves, often due to mental or behavioral health conditions. Trump has also advocated for relocating homeless people into government-run detention camps, a policy that would fall hardest on disabled Americans.
Green told Truthout that the effort to open Massachusetts’s records grew out of a recognition that a return to the mass warehousing of disabled people in inhumane conditions remains a looming threat. “Around us, the pressure is rising to institutionalize more and more disabled people,” he said.
Records made accessible under the new law disrupt the pro-institutionalization talking points that are creeping back into the mainstream. “I’ve now read probably two dozen files where, invariably, in more than 90 percent of them, the [people incarcerated there were] asking to know where their families are, asking to be released, asking to be given a trial out in the world,” Green told Truthout. “They were being detained against their will, and they knew it. It was not this fantasy that we’ve created of believing that these places exist because people can’t help themselves.”
The legislative success in Massachusetts is a result of organizing among disabled people, many of whom experienced institutionalization. Their recent work with the legislature began when the state convened a Special Commission on State Institutions in 2023. The commission’s aim was to explore connections between the state’s history of forced institutionalization and the barriers to equality that disabled Bay Staters still face.
“People should look back and say, ‘This is what my loved one faced,’ or ‘This is how people with disabilities were treated, and it needs to stop,’” Anne Fracht, a self-advocacy associate at Harvard Law School Project on Disability and co-chair of the special commission, told Truthout. “We deserve to have equal rights.”
Many of the state’s institutions developed reputations for being poorly maintained and for subjecting residents to neglect, abuse, and even medical experimentation. One egregious example comes from the Fernald School, where children were given radioactive material in their breakfast cereal as part of a Harvard University and Massachusetts Institute of Technology experiment in the 1940s and 1950s.
After two years of work, Massachusetts’s Special Commission on State Institutions released its findings and recommendations in May 2025. Following those recommendations, Massachusetts Governor Maura Healey signed the new records law in November as part of a supplementary budget measure.
Now, state hospital records will be made available to a resident’s family members or academic researchers 50 years after the resident’s death. The general public will be allowed access once documents are at least 75 years old and the subject has been deceased for at least 50 years. The new law also imposes a moratorium on the destruction of any records related to the institutions while the state works to improve its record-keeping system.
Kate Benson, co-chair of the special commission alongside Fracht and president of the Belchertown State School Friends Association, a nonprofit dedicated to teaching disability history and named for one of Massachusetts’s former state institutions, told Truthout that the changes could not have come soon enough.
“We’re getting to a point where the last remaining former residents are passing away. A lot of the former staff are also passing away, so the records piece gets more and more important as there are fewer and fewer people to tell the actual story.”
Already, loved ones have begun learning more about their family members who were institutionalized. “At the broadest level, this is an aspect of the issue of storytelling, truth-telling, and of family history,” State Senator Michael J. Barrett, who helped champion the commission’s work in the legislature, told Truthout. “There’s a sense in which this legislation drew momentum from that insistence that these personal histories are worth knowing.”
Barrett himself discovered that his great-grandmother had spent more than two decades in Northampton State Hospital when a cousin called to ask him about the new legislation he was championing. After the new law passed, he asked Green to help him find records from her life there. “We wound up with one hundred pages of notes on her treatment, made day to day through the 1920s, the 1930s, and the 1940s,” Barret told Truthout. It was the first time he’d learned much about that part of his family’s past.
Green, who also served on the special commission, told Truthout the records are often more expansive than what one might expect. “They have drawings and artwork by people who were detained in state schools for their whole lives, they have their handwriting, they have letters from their loved ones,” he said. “These records humanize these individuals in ways that resist and reject our ability to say that institutionalization is a good thing that’s all about helping people, and then not see the full human being on the other side whose life is being destroyed.”
Another recommendation, also implemented last year, was the repeal of Massachusetts’s Chapter 113, an antiquated law that allowed medical schools to request and use unclaimed bodies from state institutions for scientific and medical research. Green told Truthout that the law’s definition of state institution was broad enough to include existing state disability facilities. If it had been left on the books, he said, a return to Chapter 113 represented “the far ghastly end of what you could see happening if institutionalization continues to expand again under this most recent push.”
Other recommendations from the special commission’s report that have not yet been implemented include developing a museum, memorials, and educational programming. Meaningful memorialization will be a significant undertaking, as only one-third of the 27 institutional burial grounds investigated by the special commission have been restored and are being maintained. The number of burials “located in decrepit or poorly maintained cemeteries” totals more than 10,000. Most of the individuals there were buried in anonymous graves, sometimes only under a patient number without even birth or death dates.
The special commission also called for an official apology from the governor, a demand that Barrett said he strongly supports. “A profound and sincere apology is in order here, and that could be done by the governor at any time and doesn’t require passage of any legislation,” the lawmaker told Truthout.
Barrett also said he wants the special commission’s work to continue, perhaps as a permanent commission. “I don’t think this commission’s work is done, so I would like to see it given an extended lease on life. But that would be an exception rather than the rule, so we’re currently working to make sure that the exception is applied.”
For her part, Fracht said memorializing the thousands of former residents of state institutions should be one of the next steps. “We have important stories, and they shouldn’t be forgotten,” she told Truthout. “A disability doesn’t mean you shouldn’t be respected and remembered.”
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