Cambridge author Laura Zigman wonders how her 7-year-old sister acquired severe sepsis in the 1960s. David Scott, a retired rubbish collector in Brockton, is consumed by rumors that his brother was routinely left with a neglected, overfilling colostomy bag around the same time.
But Zigman and Scott so far have been unable to find answers about what happened to their loved ones who were once child residents at The Walter E. Fernald State School in Waltham, the first public institution of its kind in the United States to care for people with disabilities.
“The Fernald,” as the school was known in the Boston area, has long been shuttered, haunted by reports that it let Harvard University and MIT perform experiments on its children, including lacing their oatmeal with radioactive iodine. Now a small but growing group of relatives are trying to learn more about what happened to their family members. They say they are hitting dead end after dead end in their queries.
Stuck in a vortex of legal and legislative wrangling, their fight is prompting questions from researchers, legal experts and others about why the state is refusing to provide them information, even as photos recently published by the Boston Globe show loose documents strewn in and around the abandoned buildings located some five miles outside of Boston.
Secretary of the commonwealth William Francis Galvin told GBH News that he is prevented from releasing records because of privacy protections in the state public records laws. But others, like first amendment attorney Jeffrey Pyle, say the law provides leeway to release records if the public interest in their disclosure far outweighs privacy rights.
“There is no legal requirement that the state archives or anybody else withhold these records," Pyle said. "You cannot have democratic accountability — and accountability for your institutions — if the public doesn't have access to the information about what those institutions are doing."
“They have no right”
In 1955, a baby was born to a family living in a modest house at the end of a Roslindale street. His spinal cord was damaged from birth. After delivering the baby, the doctor delivered the somber news to his parents: Their son, John, had a severe type of spina bifida.
John’s brother, David, now 58 years old, told GBH News that his father was a disabled machinist and his mother, a housewife scraping meals together from food stamp staples like dried milk and peanut butter.
Within days after John’s birth, Scott says state social workers approached his parents.
"They just told my parents, 'You're poor. You can't get him to doctors' appointments. You have no vehicle,'" Scott said.
His parents, already struggling to care for another baby with the same condition, made the painstaking decision to move their newborn into the Fernald School, where about 2,000 other adults and children were living.
Scott says his parents visited infrequently since they didn’t have a car. Seventeen years later, he says, John died from pulmonary congestion and edema and family members weren't notified of a funeral. Scott said he’s not sure when, or how, his parents learned of their son’s death.
Scott, who is the sole caregiver for his own son with cerebral palsy, decided around five years ago he wanted to learn more about the brother he barely knew. He first called the State Archives and asked for John's file.
"The staff member said, ‘That’s a long battle,’” Scott recalls.
The contact promised him a call him back, he said, but he never heard from them again. What ensued, he said, was a series of obstacles involving state lawmakers, the Secretary of the Commonwealth’s office, and what is now Massachusetts’ Department of Developmental Services.
Along the way, Scott learned something that astonished and infuriated him: State officials maintain that exemptions to the state’s public records law are so broad that even though his deceased brother lived and died in a state facility decades ago, there is no definitive way for him to view his brother's file today.
Scott was only able to obtain John’s death certificate from the state Registry of Vital Records and Statistics. Health officials listed edema and congestive heart failure along with half a dozen other disturbing conditions that Scott believes are signs of neglect, including damage to his renal artery and kidney.
“I don't trust these people and I feel like I get nowhere,’’ he said.
Scott believes the state is trying to hide what happened. “That's my brother. They have no right in my eyes to hold his records from his family,’’ he said. “I think if I ever do get them the parts of abuse or whatever are going to be taken out.”
The Fernald School, one of a vast network of 27 institutions spread across the commonwealth, eventually closed as the country looked for better ways to serve people like John. The number of residents dwindled drastically to a only few hundred in the early 2000s, and the last resident left in 2014. People with disabilities now have more options for home medical care, individualized school plans and job readiness programs.
A records debate is simmering
Scott is not alone. He’s one of a group of relatives and researchers seeking more information from the state about children who lived and died at the facility.
Alex Green, a Harvard researcher and disabilities expert, says it’s a problem for relatives of any disabled family members who were housed in state facilities from Boston to the Berkshires.
“The odds that you will be able to see and view their records, whether they're alive or dead, are extraordinarily low,” Green told GBH News. “[It’s] exceedingly costly to get any inkling about. And it would require, I think, a level of understanding of the law and bureaucracy that might require a law degree or a substantial amount of legal support.”
Green said it’s probable that the state possesses a wealth of information on each resident.
The records, Green said, are spread across state agencies and private university libraries, including the Countway Library of Medicine at Harvard Medical School. That's in addition to the papers that were left behind in the old facilities.
It's not just families who are struggling to get information. Green is set to publish a biography on the Fernald School’s founder and namesake, Dr. Walter E. Fernald. But even trying to access the administrative files for his research proved to be a herculean effort, he said, eventually prompting him to lodge a legal complaint against the Secretary of the Commonwealth last summer. That led to a temporary solution whereby only the records narrowly focused on his research were physically moved to the Department of Mental Health, where Green was allowed to view them in private. But Green says it’s an inadequate solution to a bigger problem.
He's part of a newly-formed state commission tasked with looking into Massachusetts's long evolution with institutions like the Fernald School. But the commissioners, he said, have also been prevented from viewing many of the state's records, stifling their progress.
“Loved ones can't get records. The state doesn't have to divulge what was done,’’ Green said. “As a result, we have huge gaps in our knowledge and people have huge gaps in their own family understanding and history.”
A vault belonging to — and secluded from — the public
In a gray, stone building in Dorchester, some records from the Fernald School — and essentially every state agency over time — are tucked away in a massive vault, protected by the Secretary of the Commonwealth.
Laura Zigman stood in that State Archives building three years ago when she went seeking records on her younger sister Sheryl. Born with a rare bone disease in 1958, Sheryl spent several years in the Fernald School before dying at age seven.
Now Zigman aches to know more. "Did she talk? What was the admission process like? What did her medical treatment entail? How often did my parents visit?"
By the time she made that trip to Dorchester, Zigman had already been on a months-long search. She had contacted the State Archives and reached out to Green, who advised her to circle back around to the State Archives. Eventually, Zigman said her hopes were renewed when a staff member there told her she could come view some documents from the Fernald School in person.
They brought out a trolley with some paperwork, she said, but it was extremely limited in scope.
"I couldn’t see photos or health charts or her school or social files,” Zigman said.
Among the documents was a 1960s report she had already acquired through a Google search.
The report didn’t provide names for the 2,465 people enrolled. But it did describe a young boy "confined in a seclusion room for a long time" because of his “bad behavior.” The report also outlined genetic and behavioral "research" done on the children living there. Even more importantly for Zigman, it contained a record of deaths, including a girl aged "7 years, 6 months," labeled as an "imbecile."
Zigman believes that painful term of “imbecile” referred to her sister.
She left disheartened, believing there was nothing else she could do.
She says some suggested she hire a lawyer and seek a court order for Sheryl’s documents. But for her, the cost and struggle of that were too burdensome — especially since there was no guarantee it would work.
In effort to learn more, GBH News submitted a public records request to the State Archives for the Fernald School records on Sheryl Zigman and John Scott. A state archivist, Caitlin Ramos, confirmed by email that the archives office, “does hold case files from the Walther E Fernald School for the years 1852-1969” — but added that the medical records are exempt from public access by law. Ramos said the overseeing agency for the files we requested is the Department of Developmental Services, and that viewing the records may require a court order. A GBH News request for those records is pending with the Department of Developmental Services.
Designed for transparency, a statute is used to block access
Galvin, secretary of the commonwealth, told GBH News that he wishes he could release documents to families. But he said his hands are tied by the public records law — the very chapter of legislation designed to grant the public access to state records.
“It's a statute. We're bound by the law,” Galvin said.
The law outlines exemptions to records that are to be shared with the public — a list that is over nine times the length of the definition of public records.
About the public records law exemptions:
Chapter 66, Section 10 of the General Laws outlines how government records are to be requested and inspected. But it's in another section of the law, Chapter 4, Section 7, where public records are defined, and more importantly to the families of the Fernald School, which of those records are exempt from being shared with the public.
And it's just one of those sub-sections of exemption — paragraph "c" in Clause 26 — which reads, "personnel and medical files or information and any other materials or data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy."
A sub-section of the law is at the heart of the battle here, with Galvin saying that prevents his office from sharing the records since they pertain to medical files.
“We believe and have believed for many years that it's unnecessary and the records should be public," Galvin said.
In a follow-up email, Galvin’s office acknowledged that there is “ambiguity” in the law, which means it’s likely that others “may interpret it differently.”
Other states have found ways to accommodate such requests. In Washington state, the state archives worked with the Attorney General's office to open up old state hospital records for relatives. And Wisconsin allows researchers to sign a waiver stating that they'll keep the materials for their own private use.
Now, there is a bill winding through the State House that would open Massachusetts's state records after they have aged 75 years. That bill is currently before the Ways and Means Committee, where it has stalled in years past. Galvin supports that bill and has himself filed similar legislation in past years.
Sen. Michael Barrett, a Lexington Democrat, told GBH News he sponsored the legislation in part because he worked at the Fernald School as part of a “buddy” program for disabled children decades ago when he studied at Harvard College. Barrett says he mentored a blind child who was housed in a ward with people who had "cognitive difficulties."
"Did he belong there? We'll never know until researchers can excavate the histories of the folks who were there and begin to determine why they were sent there and why they, in many cases, never found their way back into the community at all," he said.
The main opposition to Barrett's bill, he said, comes from people trying to protect the privacy of their "departed relatives," which might include former residents, staff or administrators. But a GBH News reporter attended a July legislative hearing where no opponents appeared to speak out against the bill.
Even if Barrett's bill becomes law, it won’t help Scott and Zigman, whose relatives entered the institution within the past 75 years.
Some surviving family members say that these records could be helpful for understanding their own medical journeys. But for siblings like David Scott, there’s a much deeper need, an existential reason to uncover the facts about his late brother John.
Scott says he saw a video interview with one of John's teachers who talked about his brother by name.
“She had said that without a doubt he was abused. Almost every day when he came to class, she would have to send him back because his colostomy bag was never changed. And his clothes were soiled," Scott said.
This search for answers, he said, has been “excruciating," but he feels called to do it on behalf of his family.
“You know, maybe my mother and father could look down and see me doing this if I get somewhere with it, you know, get some answers about their son,” he said.
His friends have cobbled together some money for him to hire a probate lawyer so he can follow up with DDS officials. Scott says the path forward looks extremely murky — but he is determined to keep trying until he learns the truth about his brother.
“I’m going to open up the reports expecting the worst," he said. "Anything that I read, it can hopefully only get better."
