Bills offer a chance to stop running from history

EVERY WEEK, I receive e-mails from people from across the country with questions about the former state institutions for people with disabilities in Massachusetts. They are descendants of people who died in asylums and were buried in unmarked graves and former employees looking for information about people who they fought to protect.

All of them share one thing in common: years after the vast majority of institutions were closed, they need answers, and they deserve them.

This legislative session there are bills in the Massachusetts Legislature that can begin to change that, if we are brave enough to know that the past can heal as much as it hurts. One set of bills will, like those filed in many other states, open institutional records that are more than 90 years old to descendants and historians.

The others will create a state commission to report on the history of institutions for people with psychiatric, intellectual, and developmental disabilities. They will help agencies and community members come together to understand where documents are today, where burials exist, and what the bigger story is that we can learn from the history of these places. In a first of its kind, that commission will be led by people who identify as having a disability, both within state agencies and outside of them.

People often say that the history of the Massachusetts institutions is known, but years into an extensive research project spanning more than 150 years of documents, oral histories, photographs, and letters, I can say emphatically that it is not. Instead, much of what we think we know about the 27 major institutions that once housed tens of thousands of disabled people is out of context or mythology, tinged by the often acrimonious battles of the reform era that began in the 1970s.

The result is that we do not have a sense of the scope of how much these places, and the ideas they gave rise to, continue to affect us today, good and bad. For instance, special education got its start in America in a state institution in Massachusetts. Famed psychologist B.F. Skinner’s ideas were first developed in a state asylum. Ideas developed during the reform era revolutionized the supports available for people with disabilities. Many of our leading rights advocates today, began their lives living in institutions, and their experiences—many of which were dehumanizing—inform their work today.

What are we to make of these things? I am not fully sure. But I know that the contours we can already see tell us that they are incredibly important, and I know that thousands of others agree. We must affirm that this history exists, and is part of a bigger story that must be told. That work cannot be done without a commission that can respectfully and sensitively access information that is currently scattered about the state.

The Commonwealth has the chance to embrace this work, knowing, of course, that it will not be easy. All of the people who I encounter in this effort share one common attribute: they were made victims of something larger than themselves. That is certainly true for survivors of state institutions, who have never been asked to formally share their stories. But it extends to the vast network of self-advocates with disabilities, family members, and institutional employees. Getting all of these groups to build trust with one another will take work, and getting them to understand that disabled people have a right to lead that work—because it is about us—will be equally challenging.

But already, there are promising signs. A number of the commission bills’ sponsors are themselves former employees of state institutions. In addition, more than two dozen advocacy groups collectively representing hundreds of thousands of disabled residents and families in the Commonwealth have declared their support. They know that not all of this history will make them look perfect, but they see the point of reckoning with the past so that we do not repeat it. They are open to learning. Where COVID has disproportionately killed disabled people here, they know the need to do this is more important than ever.

There are others who are more reluctant – people who see political machinations behind such an effort, or want to use these bills to settle old scores. They are small in number, but their concerns should be recognized as one of the many results of sometimes brutal ways in which deinstitutionalization was handled in the 1980s and beyond. Still, those concerns must also be seen as fear, and fear has erased this history for too long, without disabled people having a say. We need not—and cannot—be subject to it anymore.

For many years, I have worked with people who have undertaken similar efforts around the world, and here in Massachusetts, I have done small-scale work akin to these efforts, with 11^th grade students. They have all conducted themselves with professionalism and respect, knowing that the worst crime would be for our history to continue to go untold. Their actions tell me that we can and must do the same, and now, we have the chance to do it.

Alex Green is an adjunct lecturer in public policy at the Harvard Kennedy School.