Major Victories in Advancing Disability Justice in Massachusetts
Disabled leaders and our allies force passage of sweeping government transparency bill to confront the tragic untold history of state violence against disabled children and adults.
Listen to this week’s (Un)Hidden here:
What if the only documents and photos of your childhood, the only information about your sibling or ancestor, or the only information on the very whereabouts of a loved one’s grave, was in the hands of the state but they wouldn’t tell you how to get it or even admit they had it at all? What if all the stories behind that wall of silence would tell a very different tale about our world and our places in it than the one we hear every day?
That’s the case all over the United States when it comes to the stories of disabled people who lived and died in mass institutions. By hiding this story, government is poised to re-create that horror again today, and in some states, it never stopped.
But last week, ten years of unprecedented organizing and political action by disability rights leaders and our allies in Massachusetts paid off. Breaking down that wall of silence is the subject of this week’s (Un)Hidden: Disability Histories and Our World.
What Happened
In the least transparent state in America, with one of the least productive legislatures in America, we successfully passed the largest government transparency bill in decades and took the first successful steps toward tearing down some of the most secretive laws blocking public access to the hidden history of state violence against disabled people anywhere in America. It is a breakthrough of particular importance because Massachusetts created the models and mindsets about disabled people used everywhere else in the world.
As Massachusetts Governor Maura Healey told The Boston Globe, “While we can’t change what occurred in the past, we are doing what we can today to provide individuals and family members with the dignity that they deserve.”
This is work that I have been honored to lead with other disabled folks and disability organizations for the last ten years. And while I do not buy the governor’s comment that the state is doing “what we can”—after all, Massachusetts is the last New England state with large disability institutions still open—the breakthroughs here are an enormously important start.
Why? Because of the Massachusetts System.
The Massachusetts System
As I have written in my recently published book, Massachusetts created and developed the models and systems that are used to abuse disabled people everywhere else in America and the world. Since the release of the landmark 1967 documentary The Titicut Follies, Massachusetts has fought bitterly to prevent the documentation of that abuse, past and present. Government officials have done it by claiming that they have a responsibility to protect the privacy of the very disabled people they locked in state institutions against their will. If that sounds perverse, it is. And it gets worse.
Until two weeks ago, this meant that any record about a disabled person in history, no matter how old, was withheld from public view by the state government in Massachusetts because it was deemed medical.
For instance, if your ancestor was a veteran of the Civil War, treated in a state hospital, the state would not even acknowledge if they had a record about that person to you unless you went to court and paid thousands of dollars to become executor of your dead ancestor’s estate. And as we found, this meant that if you wanted to know where the state threw your disabled loved one’s body in an anonymous grave in the woods, they would not tell you that, either.
What the New Laws Do
The new laws accomplish four things:
Opening up older records to the public. The public interest outweighs the state’s, at last. As long as a person named in an institution’s records died 50 years ago (this is federal law), the public can view it from all records from the state’s dozens of asylums and so-called state schools once they are 75 years old or older.
Opening records to loved ones and scholars. As long as a person named in a record died 50 years ago, loved ones and scholars conducting academic research can view the same records named above. The State Archives has taken an expansive view of what it means to be a loved one. Other agencies have not weighed in yet.
Halting the destruction of records. As we found time and again in instances like the video below, where a person was able to walk through an open door into a Department of Developmental Services historic records facility, the state has neglected and destroyed millions of records in what can only be called a cover-up. The new legislation halts records destruction until the Departments of Developmental Services and Mental Health come up with regulations to protect records.
Repealing old laws. Unearthing the stories of individuals in the past should change how we live in the present by freeing us up from horrors of the past that might rise again if we do not take action. The first of these repealed laws is “An Act for the Promotion of Anatomical Science,” which allowed the deans of medical schools to claim the unclaimed bodies of the disabled dead for medical experimentation.
Leaders Behind a Movement
These laws only changed thanks to disabled folks and our allies. They endured resistance and threats at every turn, all of it intended to stymie this work. They also inherently understood that we cannot move into a better future while sitting silently by through the erasure of a great tragedy that society has yet to own up to. Here are some of the people who have led in this work, reflecting on the meaning and importance of it all in their own words.
“When we speak about halting the destruction of these records and repealing a law that permits experimentation on the disabled dead, we are speaking about something far deeper than policy. This is about the truth, truth we owe to those who were silenced and forgotten. These records are a testimony. They are the voices of people our society tried to hide. And the destruction of these records is an attempt to once again bury disabled people out of inconvenience.
“To have a major disability rights movement lead this work is to insist, with the full weight of history behind us, that we will not be erased. It means that the people who have carried the scars of these institutions, who know in their bones the cost of being labeled and discarded, are the ones demanding that public and private institutions, as well as state and federal governments, finally look at what they have done and what they have allowed.
“There is something profoundly human in this struggle. We are saying that the lives of disabled people, living or dead, cannot be tampered with, cannot be experimented on, and cannot be rewritten by the very hands that harmed them. We are saying that the truth must stand, even when it calls out the cruelty that has been normalized for generations.”
—Vesper Moore is a leading mental health and disability rights activist and the Chief Operating Officer of the Kiva Centers.
“The medical records of institutionalized individuals represent the last bastion of control that the state of Massachusetts has over the histories and life stories of individuals with disabilities. By making these records more easily accessible, the life of the institutionalized is brought out into the light and allows these individuals and their families to find their place within human history, rather than being erased by bureaucratic red tape. The pride we feel at having been a part of an all disability led movement that was able to make the Commonwealth acknowledge the dark yet hopeful history of disability in the state cannot be put into words. We have been fighting for this in the dark for years and now, like those who have been institutionalized, our history is being brought out into the light.”
—Katherine Benson is the co-chair of the Special Commission on State Institutions
“The institutionalization of people with disabilities in Massachusetts is a history of frequent human rights abuses. The law addresses aspects of a sordid legacy, creating a path to solace for family who had members hidden in state facilities, while also enabling all of us to better understand, in a time when community-based services for people with disabilities are threatened, that institutional placements of any kind can be radically dehumanizing.”
—Bill Henning is executive director of the Boston Center for Independent Living
Where We Go Next
Laws only work if they are implemented correctly. There are significant reasons to believe that some state agencies who have been dragged into accomplishing the goals we intend to fix with these laws are still not willing participants in addressing the wrongs of the past with simple transparency.
In June 2025, the first disability-led human rights commission to investigate historical institutional abuses (disclaimer: I wrote the legislation and served as a member alongside the other folks named above) issued damning findings that led these laws.
But we called for more, including the following:
A formal apology from the Governor for past abuses of disabled people.
Creation of a memorial to the disabled dead and institutional survivors.
Inclusion of this history in the state’s K-12 curriculum.
Opening records on all of the state’s approximately 14,000 anonymous graves for the disabled dead so that families can find their loved ones.
Searching for unmarked graves of the disabled dead at current and former institutional sites.
A search for human remains in university and government collections.
This is human rights work. This is disability justice work. Its success will require clear communication and cooperation across state agencies. The Massachusetts Archives has proactively led with clarity and grace on this issue, but it will take buy-in from the Executive Office of Health and Human Services and leadership from Governor Maura Healey. From a decade of work on this, it is clear to me that success will ultimately hinge on the work of everyday citizens like you and me.