Our country’s long history of institutionalizing people with disabilities is complex and hard. It has affected so many people’s lives in so many ways. It continues to affect what services people with disabilities get and how they get them in ways both visible and invisible.
But my decades of self-advocacy leadership have taught me that nothing is too daunting for self-advocates to take on. I have seen up close and personal how self-advocates, when put in charge, can make “extraordinary” things happen. The Massachusetts Special Commission on State Institutions is just one example.
The Massachusetts legislature established this commission after a series of protests surrounding the country’s oldest institution for people with disabilities. In late 2020, the City of Waltham decided to let the local Lions Club chapter use the site of the old Walter E. Fernald Developmental Center for a drive-through holiday light show. Disability activists, including myself, mobilized in opposition to using “the Fernald” (as the site is widely called) for a fundraiser. We felt that the show papered over the human rights violations experienced by tens of thousands of persons with disabilities in the state’s custody over more than a century of operations.
One of the leaders of our protests, Alex Green, was deeply aware of the historical importance of this site. Before he began seriously studying our nation’s history of institutionalization, he was part of the city committee that bought the property from the state. Early on, he warned that the city was not doing everything it should do to recognize the site’s historical importance for the disability community. He had worked with high school students to document the names of the 296 institutionalized people with disabilities buried in unmarked graves at the MetFern Cemetery, including Fernald residents. The Fernald is one of many examples of how institutionalization makes it all too easy to forget about persons with disabilities, both in life and in death.
Alex’s research led him to write an award-winning book about the man for whom this institution was named. A century ago, when eugenics was on the rise, Dr. Fernald was a leading supporter of institutionalization. Alex discovered that late in life Dr. Fernald became a believer in community integration. Dr. Fernald became conflicted about segregated institutions after he carried out a study he never published of former residents of his facility. Dr. Fernald learned that many people whom others believed to need institutionalization were in fact thriving in their communities at a time when there were no formal community-based alternative services. Although the title Alex chose for his biography of Dr. Fernald–A Perfect Turmoil–captures how this important figure in disability history likely struggled when faced with facts that contradicted his earlier beliefs, I like to think that our protests also influenced his choice.
In the end, the protests did not change the city’s holiday lights plans. But they did raise awareness about the broader need to do something that might do justice to the state’s troubling history of mass disability institutionalization. So, these protests accomplished a larger, arguably more important goal: getting the state to set up a formal structure for dealing with the tensions and challenges that many other cities and communities throughout the state, the country, and the world have struggled with when attempting to confront similar histories. After all, mass disability institutionalization is a global phenomenon.
The proposal was a first-of-its-kind legislative commission. I’m not aware of another person with disability-led truth commission. We had to advocate hard for this: in Massachusetts, at least, all legislative commissions are led by lawmakers. But unlike some other places, Massachusetts doesn’t have any self-advocate lawmakers. Recognizing that persons with disabilities should lead the charge, the commission’s legislative co-sponsors worked hard not to concede this crucial ground.
We knew at the beginning that it would be essential for persons with disabilities to lead this effort. Writing in 2021, my colleagues Alex and Hezzy presciently urged for any truth commission to be person with disability-led:
“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.”
In other words, people with disabilities needed to lead this historical human rights work because we have the most to lose from erasure and revisionism.
It took some convincing, but the Department of Developmental Services nominated me to be a part of this talented, dedicated, and diverse group of archivists, activists, and allies. After some time, I became a co-chair and led the group’s work during its final year. We learned a lot about the state’s institutions, including locations where the state knew that people had been buried in unmarked graves. We worked together with a university center to write a 200-page report on everything we learned. We also made a series of important recommendations for how to recognize and respond to this history. We made sure to make our recommendations in plain language, so that everyone can easily understand what we have learned. If self-advocates had not been leading the way, I don’t think our recommendations would have been as big and bold as they ended up being.
One of our recommendations was to increase the public’s access to records from institutions. For too long, the state invoked privacy laws to deny relatives of institutionalized people, and formerly institutionalized people themselves, to records that could tell the story of their lives. These restrictions also got in the way of researchers and historians who wanted to understand and share what really happened inside institutions, including what happened to people’s bodies when they died. But these excuses weren’t real. For example, the state left supposedly confidential patient records scattered on the ground when it sold the property to Waltham. We also now know that institutionalized children’s artwork was withheld from the public because authorities mistakenly believed they were medical records just because the children were deemed “patients” after they were institutionalized. After the commission completed its work, I got to be in the room when the governor signed a law that will help change how the history of institutions gets told.
That’s just the beginning.
That’s why the Commission also called for robust inclusion of disability history in public schools’ curriculum. This includes the history of mass institutionalization and the history of the independent living movement. This way, students with and without disabilities can better understand present-day policies and attitudes about people with disabilities, as well as their capacity to change these for the better, as so many of the disability rights movement’s ancestors have done before us. Just like people with disabilities warehoused far away from their communities, so too must disability history come out from the shadows. We need people with and without disabilities to know and appreciate disability history to avoid repeating the mistakes of the past and to become inspired by those who have gone before us.
And that’s why we need more than just education. We need a museum. We need an apology. We need the sites of institutions preserved respectfully. We need laws and policies changed. We need new avenues for telling our stories. We will need taxpayer dollars to make this all happen. Our commission recommended all these things. Together, our recommendations represent a cross-systems commitment to reckoning with the complex and enduring legacy of mass institutionalization. And like our commission, people with disabilities need to be leading the way on efforts to implement each one of them.
Action is urgent. Disability history is actively being erased as we speak. Last year, the City of Waltham opened a children’s playground on the site of the Fernald. Despite our protests and advocacy, there are no plans to erect the kind of memorial the commission has recommended and that justice requires. We’ve seen such sites be desecrated before. Just a few miles away, for instance, much of the site of the former Metropolitan State Hospital has been converted in luxury condominiums. There is no proper memorial to the disability human rights violations that occurred there or to the disabled bodies buried without markings in the nearby woods. There is no space at that site where persons with disabilities tell their stories.
Naysayers will point out that there is a memorial path alongside the Fernald’s new playground. But the version of the Fernald described there does not tell the full story. Plaques describe how people with disabilities at Fernald exercised, gardened, played sports, created artwork, and went sledding. But the plaques do not describe the medical and scientific experimentation; the instances of physical, sexual, and verbal abuse; the involuntary admissions and administration of forced medications; the unmarked burials; or the squalor that persisted for decades until courts intervened. Importantly, the plaques do not describe the two “evident judgments” about institutionalization made by the U.S. Supreme Court in Olmstead v. L.C. in 1999: that the institutionalization of people with disabilities “perpetuates unwarranted assumptions that [we] are incapable or unworthy of participating in community life” and that “institutional confinement severely diminishes individuals’ everyday life activities.”
Across the country, changes in disability policies and challenges to legal protections are threatening the hard-won gains we’ve made to claim our right to be a part of and truly belong in our communities. It seems to me that too many of our nation’s leaders have either forgotten or were never aware of all that persons with disabilities have had to endure just to belong. That’s why the work of the Special Commission on State Institutions is so important: it puts a spotlight on the history of mass institutionalization of persons with disabilities in Massachusetts, which is in many ways the same history that has played out in nearly every other state. If these histories are forgotten, then it will become more likely that new forms of institutionalization will emerge.
Regardless of motivation—progressive reform, eugenics, medical science, compassion—the story is mostly the same: a group of people without disabilities who believe that persons with disabilities need to be separated from society come together to create systems that do just that. The systems that Dr. Fernald helped put in place are old and complex and cannot be undone overnight. History teaches that getting people with disabilities out of institutions is just a part of the solution. We need to undo the systems that still today make community living an extraordinary act of courage for far too many people with disabilities. And we need to be imaginative in creating new systems that ensure that ordinary and extraordinary persons with disabilities alike are not only integrated into the community but truly belong in them.
I dream of a future where we do not need people with disabilities to do extraordinary things to enjoy the same opportunities to live, learn, and belong that people without disabilities take for granted. My hope is if Massachusetts and other places like it follow the Commission’s recommendations, then that dream has a chance of coming true.
