Reckoning with the History of State Institutions for People with Disabilities

On October 25th, HPOD hosted a panel discussion exploring the work disability rights activists and scholars are doing in Massachusetts to confront the largely hidden history of disability institutions, including state schools for people with intellectual and developmental disabilities, as well as state hospitals and asylums for people with mental illness.

The panel included three members of the newly formed Special Commission on State Institutions, a 17-member, person with disability-led truth commission in Massachusetts, which is currently looking into the burial practices of state institutions and barriers that prevent survivors, families, and scholars from accessing records. The panel was moderated by Harvard Kennedy School faculty member and HPOD fellow Alex Green, who drafted the legislation that created the special commission and now serves as a member.

Massachusetts was home to more than two dozen large-scale institutions, including the first public and private schools for people with intellectual and developmental disabilities in America. At their peak in the 1960s and 70s, Massachusetts institutions warehoused thousands of disabled individuals; they were considered inmates. While many of these institutions are now closed, Massachusetts is the only remaining state in New England that still has medium- and large-scale institutions.

Reggie Clark, a long-time self-advocate, spoke about forced labor he was made to do as a child while at the Walter E. Fernald State School in the 1960s. Along with daily tasks, like making 24 beds on his ward, Clark was expected to care for violent or self-injurious inmates when employees were too afraid to do the work. As he recalled:

“If they did any biting, you’d have to know what to do. If they banged their head, if they picked themselves, you had to know what to do.”

In the early 1970s, Clark left the Fernald School and he has lived independently since. As a member of the Special Commission on State Institutions, Clark said he has been alarmed by the mishandling of records that were left behind in abandoned buildings at state institutional sites by the state, the former employee unions, and family advocacy groups, all of whom stored records at the institutions.

“I think when you don’t take care of records that belong to people and you don’t take care and make sure that people don’t abuse anything,” Clark said, “that’s what I call laziness: lack of understanding what disabilities are all about.”

As a veteran special education teacher, panelist Kate Benson described the need for youth with disabilities to know these stories and understand their importance. “Until I learned more about the history I didn’t understand how important it was for my students to know what had come before them,” Benson said. “They didn’t understand the history; therefore, they weren’t good self-advocates, because they didn’t know how hard the fight was to get some of the rights that they had and how important it was for them to think about the rights that they still didn’t have.”

Also a member of the Special Commission on State Institutions, Benson said she wants to ensure that the anonymous burials of individuals in institutional cemeteries are addressed, and that records which are currently restricted in perpetuity are made available to people whose lives were directly affected by institutionalization. She added:

“I can go on Ancestry.com and map my family all the way back to the Mayflower if I want to, but there are many individuals who cannot do that and [access to] those records are the barrier. There is no reason why anyone’s personal history should be embargoed like that."

In many ways, the reckoning with the history of institutions for persons with disabilities is part of a larger effort to ensure that disability history is taught to a new generation of student leaders with disabilities. Desiree Forte, Youth Program Manager at Easterseals Massachusetts, described the genesis of the #TeachDisabilityHistory campaign: a youth-led movement that grew out of a successful 2009 effort that resulted in then-Massachusetts Governor Deval Patrick’s proclamation of October as Disability History Month.

Working with allies, Forte and a team of student advocates then persuaded the Department of Elementary and Secondary Education to add a documentary film The Great Fight for Disability Rights to a repository of free curricular materials for educators in Massachusetts. “This incredible group of young adults meets regularly and across the state … talking about why it’s important to talk about disability history,” Forte said. “We want to promote educators teaching that disability history.”

A knowledge of that history is essential for ending institutional bias in the present day, Forte continued. “As a person with a disability, at any moment you could have to go into a situation that you didn’t want to go into because the supports aren’t there. Thankfully places like the Fernald School are closed but there’s still a risk of institutionalization for people with disabilities because they don’t have those home and community-based supports and services.”

As a longtime disability rights leader in Massachusetts and HPOD's Self-Advocacy Associate, Anne Fracht said that revealing the history of institutions is essential for the self-advocacy movement, which is led by people with intellectual and developmental disabilities determined to to make their own decisions, speak for themselves and for others with disabilities, and take control over their lives. “It’s important to know our history, know stories like Reggie’s, stories of other people, and know what we’ve been through, and not forget it,” Fracht said. As a member of the Special Commission on State Institutions, she said that the failure to confront the history of institutions is directly connected to the barriers to equality that disabled people face today.

“We still have group homes,” Fracht said. “Group homes are people living together, between 4 and 8 people. These are mini-institutions. We’ve closed the institutions but we’ve opened up tons of mini-institutions. As long as we have group homes and they’re funded by agencies, and agencies are in charge of our money and telling us what we can and can’t do, we have institutions.”

“Until we can make our own choices, we’ll always have some type of institution.”

This event summary's author, Alex Green, is writing a biography of Dr. Walter E. Fernald to be published by Bellevue Press in 2024.

Related Readings

• Alex Green, "Understanding the role Massachusetts played in both developing and resisting eugenics," The Boston Globe (June 7, 2022)
• Jan Nisbet, Pain and Shock in America: Politics, Advocacy, and the Controversial Treatment of People with Disabilities (2021)
• "Mass. Locked Up People With Mental Illness For Decades. Now Advocates Want Their Stories Told," WBUR News (Sept. 27, 2021)
• Katherine Anderson, The State Schools of Massachusetts (2019)
• Belchertown State School Friends Association's Digital Museum
• Easterseals MA, #TeachDisabilityHistory Campaign video (2020)