Below the Surface: A Special Report

John Scott loved going to school. He spent Mondays through Fridays learning how to read, count money and tell time. But it was the creative subjects –– art and music –– that he enjoyed most. John didn’t attend a regular school. In fact, the school he attended didn’t even consider him to be a real student. He was an “inmate,” a “patient” of the Walter E. Fernald Developmental Center, the oldest state-run institution in the United States for people with intellectual and developmental disabilities.

John spent his days, and most of his life, in a wheelchair in the institution located in Waltham. He was born with spina bifida, a birth defect that leads to an incomplete closing of the spine and spinal cord. He was paralyzed from the waist down, his legs were atrophied and he had a barrel chest. Born in 1955 in Boston to Eleanor L. Del Greco and James Warren Scott, John spent most of his life in the Fernald School.

"He really loved coming to school everyday... he was just very sweet," recalls Susan Weiner, 72, John’s teacher between 1970 and 1973, the last years of his life. Nearly 50 years later, Weiner, who retired from teaching in 1973, still remembers her favorite student with fondness, his black-rimmed glasses, his black hair and stubble and his love of good conversation and learning.

John passed away at the age of 17 on April 16, 1973. According to his death certificate, he died from congestion in his pulmonary artery and edema with insufficiency, conditions in which the heart does not properly pump blood to the limbs. As was the case for many patients at the Fernald School, John was buried in an unmarked grave.

There were at least 16 state hospitals and three state schools in Massachusetts that buried their patients under unnamed graves. A “state hospital” was typically for the mentally ill, and its purpose was to “cure patients” suffering from varying degrees of mental illness and even diseases such as alcoholism. A “state school” was meant for the disabled, or the “feeble-minded” as they were originally called; they later became known as developmental centers. Their primary purpose was to educate intellectually and developmentally disabled children to be independent. Over time however, conditions deteriorated and these schools transitioned into custodial institutions.

MetFern, a word used to show the combination of MetState and Fernald, is only a small case in a catalogue of larger institutions that adopted similar burial practices. Foxborough State Hospital, Danvers State Hospital and Medfield State Hospital, all named after the towns they’re located in, are a few examples. On average, most institutions buried between 1,000 to 2,000 patients on plots of land out in the woods and in overgrown fields. However, there are some institutions in Massachusetts that far outnumber these figures.

Tewksbury State Hospital, which was and continues to be one of the larger institutions in the state, is one such example. Spanning over 800 acres, the institution first served as an almshouse for the destitute and later transitioned into a custodial facility for the “criminally insane” and a hospital to treat infectious diseases such as syphilis and tuberculosis. Today Tewksbury operates as a hospital providing treatment and care for adults suffering from medical or mental illnesses. Rickord estimates that its cemetery could hold 10,000 to 30,000 patients who were similarly buried without names, birth and death dates – the traditional markings of cemetery gravestones. Still, these numbers are rough estimations. There is no definitive way to know how many patients are buried in institutional cemeteries, say experts.

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“Almost always these [cemeteries] were unnumbered, unnamed and they were often places where both, officially and unofficially, bodies were sold to medical students or stolen,” says Kim Nielsen, a professor of disability studies at the University of Toledo, Ohio. “Medical education tended to include cadavers but people weren’t provided with them, and they tended to be stolen from black cemeteries and insane asylums. These were places where disregarded people were put and nobody seemed to care.”

What these numbers and facts show is how the country collectively perceived people with disabilities. The treatment of the mentally ill and disabled in particular paints a haunting portrait of a country stunted by stigma, one that deemed people with disabilities as shameful, something to hide away and to ignore.

“You could be looking at easily over 100,000 [people buried] in institutional lots [in Massachusetts] that are just marked by a number, or not even marked at all,” says Rickord.

In response to this, an increasing number of grassroots movements have been spreading across the country, from Utah to Minnesota to Georgia, that aim to bring recognition and justice to those buried under unnamed graves. These movements are focusing on properly marking and preserving the final resting grounds for institutional patients.

Adam Rosenblatt, a professor at Duke University, has been studying this phenomenon for a book he’s writing, due out in late 2021 or early ‘22, on people who care for places of the marginalized dead including mental hospital cemeteries and African American burial grounds. One of his chapters focuses specifically on MetFern and Fernald.

“The movement to try to commemorate mental hospital cemeteries is something that’s been around since the ‘90s, and it seems to be slowly but gradually spreading,” he says from his office in Durham, North Carolina. “There is a desire to contextualize and commemorate…[an] effort to tell the story, whether on the web, even just filling in the gaps on sites like findagrave.com with pictures of each grave, or researching the individual lives so each person is dignified by having their story reported somewhere.”

Alex Green, a local disability historian, heads one of those efforts alongside a group of 11th graders he used to teach part-time at Gann Academy, an independent high school tucked between Fernald and MetFern. Using census data and town records, he and the students are reconstructing the lives of the 296 buried in the cemetery. Seventeen-year-old John Scott is one of those. They’re also advocating for better access to medical records and are working on preserving and cleaning up the cemetery to make it a more dignified place.

It’s a brisk October afternoon in Waltham. Up ahead, on a hill in the woods where thousands of dry leaves cloak the ground, is an old brick building surrounded by metal fencing. Its windows are broken, its massive wooden door hangs off the hinges and dozens of vines snake their way up its weathered exterior.

The building, which dates back to 1888, is just one of the many structures that make up the campus of the Fernald Center. Green, who often explores the grounds alone and with his students, stands at the door. With a deep breath, he walks into the entrance, ducking beneath rotting wooden panels as he climbs over broken chairs and tables. In the corner, on a pile of dirt and dust, sits an old, crumbling wheelchair.

The building is the oldest of the Fernald Center. Since the institution’s closure in 2014 and its subsequent purchase by the City of Waltham, the 196-acre campus has fallen into a precarious state of disrepair and has been completely closed off to the public. Its more than 70 brick buildings have been left to decay and today they only serve as a haunting reminder of those who were forgotten within their walls.

It wasn’t always like this, however.

The institution, originally called the Massachusetts School for Idiotic and Feeble-Minded Youth, was founded in South Boston in 1848 by Samuel Gridley Howe. His vision was to teach people with physical and intellectual disabilities enough basic life lessons so that they could survive independently in society.

During the mid-19th century, Massachusetts became the seat of the Reform Movement, a major religious revival in which individuals in the state began advocating for public schools, prison reform and mental illness as a call for the betterment of society, says Yoni Kadden, the department chair of history at Gann Academy.

“When [the school] opened it was radical, it was innovative. It must have been mind-blowing to have proposed a place like this,” says Green in his office at Harvard University where he works as an Adjunct Lecturer in Public Policy. “The concept of people in that era is that people with developmental disabilities could not learn.”

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The school moved to a bigger campus in Waltham in 1888 under the direction of Superintendent Walter E. Fernald in efforts to accommodate more patients. This relocation echoed a national trend as institutions across the country began to grow to meet demand.

“Between 1830 and 1880 the number of institutions in the U.S. just skyrocketed and some of them were very specific in diagnostic terms but others were really broad,” says Nielsen. They kept getting bigger and bigger and bigger. This was part of the effort to contain, isolate, segregate and put away people that were considered undesirable.”

The Fernald School’s move to Waltham also coincided with a time in which institutions began shifting into custodial facilities where people with disabilities could be sent away for life. Due to the stigma surrounding disabilities, these institutions –– which were most often built outside of cities and on the peripheries of communities –– created an opportunity for people to rid themselves of the shame they often felt to have a physically or mentally disabled family member.

“There was a growing movement in the early 20th century where people began to see all sorts of ‘disabilities’ as being detrimental to society as a whole. There was the idea to purify society,” says Kadden.

That could be stretched to mean anything that embarrassed a family, experts say. “There were people who should not have been in there,” says Glenda Schneider, 70, a physical therapist at Fernald from 1969 to 1972. “People who played chess, read the newspaper. It broke my heart that some of these people were in a state institution for life. I remember the people. I have photographs of them. I remember every single patient I had there.”

As numbers at the Fernald School began to swell into the 20th century, a demand for caregivers intensified, resulting in an increasing number of patients who were neglected. The onset of World War I and then World War II exacerbated conditions when staff members were called away to aid in the war effort. As a result, these institutions hired staff who had little to no experience caring for people with disabilities.

Then, by the late 1940s and early ‘50s, conditions had severely deteriorated when Quaker Oats, in partnership with the Massachusetts Institute of Technology (MIT), began conducting a series of radioactive experiments on more than 70 young boys between the ages of 10 and 17. The experiments involved feeding them oatmeal and milk laced with radioactive iron and calcium and directly injecting them with radioactive calcium. The scientists wanted to learn how the body absorbed and processed minerals, according to a 1994 report by President Bill Clinton’s Advisory Committee on Human Radiation Experiments.

These boys were part of the Fernald School’s “science club” and were incentivized with special field trips off campus and gifts such as Red Sox tickets. Clemens E. Benda, Fernald’s clinical director at the time, sent parents a letter in May 1953 explaining the study but never mentioned the radioactive isotopes. Rather, he said they were trying to “improve the nutrition of our children.” He continued: “I hope that you have no objection that your son is voluntarily participating in this study… if you have not expressed any objections, we will assume that your son may participate.”

Human experimentation was just one of the horrors researchers have since discovered. Many of the patients were neglected by staff which led to unfortunate and premature deaths. “It was really bad in there. There are people buried in the cemetery who were scalded to death in hot showers, or who choked to death on food. These are not things that are acceptable, this is horrifying,” says Green, who gleaned this information through death certificates discovered during research.

By 1947, Fernald and MetState had begun to bury their dead on a plot of land in the middle of the woods which lies squarely between the two institutions. (Prior to that, unclaimed bodies were buried in unmarked graves in Waltham’s Mount Feake Cemetery on Prospect Street.) Dividing the cemetery into a Catholic and Protestant section, the patients were buried in basic pine caskets lined with gray cloth, marked only by a nameless slab of cinder and concrete. The institutions usually did a haphazard job of contacting family members about deaths. In certain cases, due to the social stigma surrounding disabilities, families made no effort to collect or visit the body. Based on oral histories, it is now a certainty that prior to 1947,patients were buried around the grounds of the institutions' campuses without so much as a stone to denote their presence, says Green.

“MetFern is marked, but unnamed. It seems like this was a common practice in Massachusetts. There are others [buried] in graves which aren’t marked. In some ways, MetFern is even a step up for the burial that some people may have had,” says Rosenblatt.

It was a damp, muddy day in 1971 when Wayne Brasco, a young funeral director, was driving out to MetFern to bury his first body for MetState. His family’s funeral home, Brasco and Son, located in Waltham, had struck up a contract with Fernald and MetState to bury their dead. When he got there, Brasco noticed the 6-foot-deep grave was filled with 5 feet of water. When he asked the groundskeepers what to do, they told him to sink the casket with rocks.

Brasco refused.

“I took a bold move and drove away with the body in the hearse. I said, ‘If you call me back and there’s any water in that grave, I’ll call the newspapers,” says Brasco, now 72, from his office where he has worked since the 1960s. The grave was pumped and he returned to bury the body, for which he was paid about $130. It was a small step in what was to become a movement headed by Brasco and a priest named Father Henry Marquadt to offer more dignified burials for the institutions’ patients.

In 1973, Father Marquadt started the Death and Dying Committee at Fernald to help family members pay for better burials at MetFern or for a grave to be arranged in a family cemetery or local cemetery such as Mount Feake, which is a short drive from the Fernald School. In the 1970s, a grave cost about $300 and a grave liner –– an outer burial container usually made from concrete the casket is placed in –– was another $150. Father Marquadt passed away in 1991 and Brasco served on the Death and Dying Committee until 1992.

“I saw him write checks out of his checking account to buy graves...He humanized it, he made it real,” says Brasco. “We helped a lot of souls. We prevented a lot of burials [at MetFern]...MetFern was like a dirty memory.”

This initiative, compounded by a national disability rights movement, which gained traction in the late 1970s and early '80s, demanded an improvement of conditions for patients. While some certainly benefited from this, others continued not to. If a patient was fortunate enough to have a loving and dedicated caregiver, then their time within the institution was beneficial, even happy.

Weiner remembers there were some nurturing staff there, people who took the kids home on holidays, or donated nice clothes for the deceased to wear in their caskets.

But she recalls that even with attempts at reform, there remained grimmer realities for others, things that still haunt her, such as rumors of staff physically abusing patients including a young man named Billy. And, some of her own patients, including John, were visibly neglected and rarely kept clean. These instances of abuse were common in institutions, say experts.

“When institutions were created, in many ways there were good intentions,” says Neilsen. “It hardly took a few decades before they were overcrowded and incredibly underfunded. I think in those situations it’s easy for staff to abuse folks and for staff to become frazzled. The lack of supervision, and families being encouraged to stay away and...tell [people] their kid died, it’s almost creating the ideal space for abuse.”

Although there is increasing awareness surrounding the histories of institutions such as Fernald and MetState, MetFern still remains largely unknown. There are only two signs informing passersby of who is buried there. Most of the headstones have sunken into the ground and their etchings have been eroded by years of weather and no maintenance.

Green and Kadden are currently working with Gann students to create more markers for the cemetery and reset the headstones to make the place more dignified. The students have also created a Yizkor book, a book of remembrance, filled with research on the institutions and information on the lives of those buried at MetFern. Some students have continued to work on biographies outside of class and even those who have graduated from Gann Academy continue to follow up.

“Even though after graduating, I’m far away and can’t be as invested, I still really care. Respect for the deceased is a very important value to me,” says Hodaya Propp, 20, a former student at Gann Academy. Propp, who now studies applied and engineering physics at Cornell University, was responsible for creating the cemetery’s official website for her high school senior project. She remembers stumbling across MetFern for the first time with a sense of shock. “It just seemed forlorn. There was nothing there.”

The grounds of the Metropolitan State Hospital were torn down after its closure in the ‘90s and luxury apartments now stand in its place. Although the Fernald campus is still intact and belongs to the City of Waltham, advocates are pushing for some of the old buildings to be repurposed into spaces for the city’s disabled. There’s also a desire to turn the campus into the country’s first disability museum. The significance of it being housed in the country’s oldest state-run institution for the disabled cannot be understated.

Green and his students are also advocating for better access to patients’ medical records, most of which are locked up under state privacy privileges, raising questions about how long privacy should be protected versus the need to tell the stories and histories of these institutions. On Oct. 31, 2019, Green and a student testified on Beacon Hill before a legislative committee in support of a bill that would unlock the records of people with disabilities who died in institutions.

Their advocacy work has not gone unnoticed. “I think it’s great that these people will not be forgotten, that they’re memorialized in the work the students have done,” says Weiner. “They were real people. I certainly think that there’s historical value to all this and lessons for the future.”