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Reckoning with the History of Institutions for Persons with Disabilities in Massachusetts

Aug 16, 2021   Authors: Alex Green and Hezzy Smith   Making Rights Real   Education
FernaldPickAxes: Child inmates of the Massachusetts School for the Feeble-minded, constructing a road at the institution in the late 19th or early 20th century. Courtesy, Mass Archives.

Child inmates of the Massachusetts School for the Feeble-minded, constructing a road at the institution in the late 19th or early 20th century. Courtesy, Mass Archives.

Many of the origins of disability rights policy in America began in the Massachusetts legislature. There, in 1843 and 1846, Dorothea Dix and Samuel Gridley Howe launched major efforts to improve living conditions for people with mental, intellectual, and cognitive disabilities. More than 175 years later, disability advocates are now calling for legislators to pass a law that will, for the very first time, authoritatively explore the story of the institutions that Dix reformed and Howe created.

These institutions, known, respectively, as state hospitals and state schools, expanded and grew well into the latter half of the 20th century. They warehoused people with disabilities, subjecting them to the worst of human rights violations. Civil rights movements that began in the 1960s led to federal intervention, reform, and the closing of many institutions. While a sketch of this history is known by the general public, that is not enough.

The size of the former state institutions means that their impact can be felt widely today. Thousands of residents, families, and employees are alive and want to understand how their story fits within a broader understanding of disability rights history and American history. But many are confronted with obstacles if they go looking. Documents are scattered and disorganized, existing public policies create unexpected hurdles in accessing records, and enormous challenges remain in overcoming widely held misperceptions about this history. Moreover, the identification of individuals buried in nameless graves has never been undertaken by the state, although mounting evidence from oral histories suggests that unmarked graves dot the landscapes of more than 27 former institutions across Massachusetts.

A holiday light show at the former Walter E. Fernald Developmental Center in 2020. In the background is a former library building whose basement was used variously as a dental clinic, morgue, autopsy room, and space for sectioning brain slides.

Meanwhile, the general public remains largely unaware of this history, and as a result, city leaders across the state are re-using former institutional sites in ways that often put disabled people last and eradicate history. The former Metropolitan State Hospital has only one marker acknowledging its history at the apartment complex that was built atop its ruins. That marker honors the psychiatrists who ran the institution while making no mention of the people who lived and died there. Across the road, the destroyed ruins of the former Fernald School were used for a holiday drive-through light show last winter while ignoring the protests of disability rights advocates and institution survivors.

These re-uses allow for ableist historical misrepresentations to abound, ceding important human rights history to ghost hunters and modern-day carnival barkers. A recent Boston Globe article about the re-use of the former Medfield State Hospital included a positive description of the institution’s historical use of forced farm labor as “very creative” and compared it to art therapy.

An authoritative state-issued report will help account for this history and make recommendations for basic policy changes that will enable us to grapple with institutions’ complex legacy. To ensure that the history is properly handled, the composition of the commission matters as much as the work that it will do. The bills before legislators allocate seats for representatives across multiple state agencies and longstanding advocacy groups, and disability rights advocates are supporting amendments that will add seats for a former employee and the families of those in facilities today.

Importantly, the bills specifically state that the majority of the seats on the commission must be held by people with disabilities. Moreover, advocates are urging that the co-chairs of the commission be people with disabilities from the two groups most impacted by the state institutions. History’s greatest relevance to those of us in the present is its potential to empower those of us who see ourselves in it. When denied that opportunity, we are forced to reinvent our places in the world from scratch, time and again. This commission’s work will help break that cycle by ensuring that people with intellectual, developmental, and mental health disabilities lead this process.

As Sera Davidow, director of Wildflower Alliance, a peer support and advocacy organization based in Holyoke, Mass. says, “Our psychiatric system of today is relentlessly bound up in repeating past mistakes in the name of progress at least in part because it never slowed down long enough to truly listen. Step one is to cease using our power over people to control and silence them, and to make the shift toward using our power under the most silenced among us so that the wisdom they've gained through survival can finally be heard. That is what this commission seeks to do.” 

At HPOD’s March 10th event “Fernald’s Legacy: Ensuring We Never Forget Disability Rights History,” panelists with lived experiences underscored how a reckoning with the past is critical to confronting familiar patterns of discrimination today. Self-advocate and institution survivor Reggie Clark said, “I don’t think we’ve gotten out of it yet,” referring to the legacy of institutionalized models of care. “We’ve gotten out of some it, but a lot of it is still an open wound, and people need to ask questions.”

Donna Jay, another self-advocate and institution survivor, emphasized the need to understand this lingering legacy. “I want them to know who we are,” she said, pointing out that many people with disabilities today live in group homes, which often end up isolating or segregating those who live there. “People say, ‘Oh, we’re visiting a group of people in the homes.’ But it should be their home, like a family home, like brothers and sisters, and everybody should be treated like that instead of ‘Oh, we’re going to a group home today. Oh, here are the “special needs” people.’ Those words are in the past. They’re gone.”

Should the Massachusetts legislature take action, the work of this commission will be hard. In designing and stewarding an open, accessible process that allows for both unbiased stock-taking and also restorative justice for affected groups, the commission will have to contend with the interests of those who would prefer to downplay the grim aspects of state hospitals’ and state schools’ legacy, or those who would prefer not to scrutinize critically the failings of current service delivery systems that replaced them. The commission will have to confront pervasive ableist stigma surrounding the mental health and intellectual or developmental disabilities that devalue and marginalize the people who have them, and also to safeguard procedural accommodations that can allow interested members of these group to participate fully and effectively.

Thankfully, self-advocates with intellectual, developmental, and mental health disabilities are working to meet these challenges through their advocacy for the bills to create a commission. They have assembled a coalition of 25 organizations, all of whom recognize the importance of this work despite past policy disagreements. From Massachusetts Advocates Standing Strong and the Mental Health Legal Advisors Committee, to The Arc of Massachusetts, COFAR, and Massachusetts Families Organizing for Change, these groups realize that the erasure of any of this history is an erasure of their own place in the long fight for disability rights.

Together, this coalition testified and submitted testimony to the Joint Committee on Mental Health, Substance Abuse, and Recovery on June 21st. They have gathered the signatures of hundreds of citizens seeking answers and held public educational forums. The result is that more than two dozen state legislators have signed on to co-sponsor these bills. But more advocacy will be needed to ensure that the lengthy legislative process—in which these bills must navigate two more committees and a full vote of the legislature over the next 18 months—will pass.

This is a history that must be known. Today, persons with mental health, intellectual, and developmental disabilities are too easily forgotten or sidelined, and as the pandemic has shown, often with deadly consequences. One way of correcting their marginalization today is by honoring and understanding past patterns of oppression and exploitation. What we learn about ourselves through this historical reckoning may be discomfiting, but it is an essential process if we are to build the foundation for a more inclusive and respectful future.

Advocates testify in favor of passing S.1257/H.2090. Top row (l. to r.): Committee co-chairperson Senator Julian Cyr, Fernald School resident sibling David Scott, Representative Natalie Higgins; Second row (l. to r.) advocate Alex Green, Belchertown State School resident spouse Patricia Vitkus, bill co-sponsor Senator Mike Barrett; Bottom row (l. to r.) self-advocate and institutional survivor Donna Jay of Massachusetts Advocates Standing Strong, institutional survivor and disability rights leader Charlie Carr, COFAR communications director David Kassel.

Alex Green is an adjunct lecturer in public policy at the Harvard Kennedy School and fellow of the Program on Negotiation at Harvard Law School. Hezzy Smith is Director of Advocacy Initiatives at the Harvard Law School Project on Disability.