How You Can Help Uncover a Mass Atrocity Against Disabled People
It's possible to end the secrecy that hides a state, a nation, and the world's historic abuses of disabled people. You can help make it happen.
A Powerful Disability Rights Movement is Afoot in Massachusetts
You can listen to (a slightly warbly-voiced version of me reading) this week’s edition of (Un)Hidden above.
Massachusetts built the model for segregating intellectually, developmentally, and mentally disabled people that led to the Nazi genocide and laid the foundation for many of the brutal ideas and practices of abusing and stigmatizing disabled people we see today.
For more than a generation, the records that tell the story of how that system was developed and exported around the world, one individual at a time, have been off limits, part of a cover-up of documents that were simultaneously destroyed and mishandled on the other side of a wall of secrecy and outright erasure.
The general public and even the disabled people who were tortured in these institutions, their descendants, and their loved ones, were (and are) almost always blocked from accessing the very same information.
But something is changing. Thousands of disabled people and our allies have led a major effort to tear down this wall of silence, and we are making headway. I write to share just a bit about this work and to ask for your concerted action in support of our efforts.
If you are a person with ADHD, autism, cerebral palsy, Down syndrome, mental illness (like bipolar or depression or anxiety), a learning disability, an age-related disability, were ever in special education, or any of the other countless ways in which we are disabled, you are needed.
Actions you can take are listed at the bottom of this edition of (Un)Hidden.
A Brief Glimpse of a Cover-Up
As WGBH-NPR journalist Jim Braude and I discussed on Radio Boston earlier this summer, America’s historic (and present-day) love for locking disabled people in segregated institutions should be seen as a scandal akin to the Tuskegee experiments, the Irish Magdalene Laundries, and the Canadian Indigenous residential schools.
In Massachusetts alone, tens of thousands of people were held against their will in mass institutions beginning in the 1830s. More than 14,000 disabled dead are buried in large institutional graveyards in the Commonwealth, many with only a letter and number, at most, to indicate where they were buried.
But after filmmaker Frederick Wiseman documented what these practices looked like in his 1967 landmark work, The Titicut Follies, (filmed at the Massachusetts-based Bridgewater State Hospital, which remains open today), the state created privacy laws out of whole cloth and began a decades-long process of locking down records.
In the state’s telling, there was a need to protect patient privacy. Wiseman, who was a law professor before making films, knew it was a cover-up, but he lost the fight. For decades, the film was banned by court order in America. In the present day, Massachusetts now has the most strict records privacy laws in America. No document from a state institution can be viewed without prior review and redaction, no matter how old, because it is seen as a patient record, even if it is simply a note of a burial location and even if it comes from 1850.
A Disability Movement’s Response
People who commit atrocities often justify what they are doing by claiming that we are living in an extraordinary moment that demands that we suspend our humanity to do something truly horrible to a vulnerable group of people. With disabled people, look no further than the spate of politicians, from Robert F. Kennedy, Jr. to Gavin Newsom and Kathy Hochul who have scapegoated disabled people for professional gain while propping up an industry of sadists who profit from our abuse and incarceration.
One way to confront them is to demonstrate that they have always made the same urgent claims, which means we are not in an extraordinary moment at all. Rather, we live in a time that is a logical continuation of longstanding oppression and abuse sustained by a majority of the public around us, as it has been for centuries.
Given how many people have been caught up in the massive machinery of state asylums and state schools for the “feeble-minded,” millions of Americans, disabled and non-disabled alike, could find a record of how a loved one or ancestor was caught up in these systems, and that personal connection to that story could begin to change their present day perceptions, beliefs, and patterns of persecuting the disabled people around us.
Since Massachusetts has had such a central role in this story (and the ways that it is covered up), I began working ten years ago to open up the records that tell these stories. I quickly found a network of others, from Andover to Australia, who share similar beliefs and we decided to take action. We came together with the goal of ensuring that former institutional inmates, their loved ones and descendants, researchers, and the general public could someday know what was done to disabled people and begin to demonstrate connections to why we continue to do it today.
Against extraordinary opposition, our yearslong efforts began to have an impact. In 2023 we successfully won a campaign to create the world’s first disability-led, disability-majority government human rights commission—the Special Commission on State Institutions. This June, the commission issued a landmark report on our findings after two years of work. What we found was even more shocking than we could have imagined. As we wrote:
“[T]he state has weaponized claims about protecting patient privacy to an extreme degree, often far beyond the federal government, in ways that serve its interests at the expense of the public interest. Precisely because the public is largely unaware of the countless tragedies inflicted by these institutions—tragedies told in this hidden history—people with disabilities today face very-real threats by the non-disabled including the revival of large-scale institutionalization where the practice has been abolished, and its expansion where it stubbornly remains”
From the outset, we have had legislative allies in Representative Sean Garballey, Representative Mindy Domb, and Senator Mike Barrett, who put forward pending legislation in Massachusetts to open up institutional records with reasonable privacy protections after 75 years, so long as the individual those records are about has been deceased for 50 years.
This month our work led to a first step toward substantive change.
Massachusetts Governor Maura Healey put forward a supplemental budget that includes outside amendments calling for implementation of key recommendations from the Special Commission on State Institutions, including a repeal of a law allowing medical schools to experiment on the bodies of the disabled dead, a moratorium on records destruction until new regulations are promulgated, and a vastly easier process for people to access the records they have a right to see.
This week, The Boston Globe published two pieces [editorial here; article here] that painstakingly explore why action is needed. One piece profiled the story of Kimberly Turner, whose great grandmother was placed in the state’s Fernald School and diagnosed as feeble-minded for giving birth to a child out of wedlock. Her child, Kimberly’s grandfather, was then placed in the same institution as feeble-minded because he was born to a feeble-minded woman who gave birth out of wedlock. He got out and served in World War I. His mother died in the institution during the Great Influenza pandemic. Turner is barred from accessing their records and knowing their stories.
As Karissa Hand, spokesperson for Governor Maura Healey told The Globe, “Governor Healey has been deeply moved by the stories of those who attended Fernald or whose loved ones were there, and she proposed this change to improve their access to records.”
More is needed.
The Special Commission on State Institutions made sweeping recommendations including a call for a formal apology for the atrocities committed in state institutions. Because of the particularly important role played by Massachusetts in the development of these abusive systems, the nation and world need to know what happened here as much as those of us in Massachusetts, and the state must take accountability for what was done and continues to be done today in our various institutions, public and private. See the Judge Rotenberg Center as a horrifying example.
For change to actually happen, those of us here in Massachusetts need your help, regardless of where you live. I know it might seem like a lot, but I guarantee you that we have made the strides we’ve made so far because of concerted actions like the ones I’m asking for here and I hope you will join us in this effort.
How You Can Help Make Change a Reality
Share this Story Widely: For all readers, please share this edition of (Un)Hidden with others on social media and email.
Reach out to Governor Maura Healey: Tell her office, “I support the governor’s reforms regarding disability institution records and graves, but expect to see more, including a formal apology and acceptance of all of the Special Commission’s Recommendations.” You can reach her office at (617) 725-4005 or email her here, and can do so on a weekday or weekend.
Reach out House Speaker Ronald Mariano: Tell him, “Thank you for advancing Representative Garballey and Domb’s bill on historical records. Please pass this bill along with the governor’s recommendations and the other recommendations of the Special Commission on State Institutions.” You can reach him at Ronald.Mariano@mahouse.gov and (617) 722-2500, and can do so on a weekday or weekend.
Reach out to Senate President Karen Spilka: Tell her, “Thank you for advancing Senator Mike Barrett’s bill on historical records to the Committee on Ways and Means. Please pass this bill along with the governor’s recommendations and the other recommendations of the Special Commission on State Institutions.” You can reach her at Karen.Spilka@masenate.gov and (617) 722-1500, and can do so on a weekday or weekend.
Mass Residents, Reach out to Your Rep and Senator. Tell them the same things listed above. You can find their email addresses by clicking here and scrolling down to enter your address.
For those of you in the media, please consider covering this work, which is a powerful example of disability leadership and activism to expose a truth America has refused to acknowledge.
If you want to learn more about what can come from this kind of work, my recently published book, A Perfect Turmoil, is drawn from the very same kinds of records, which I had to threaten suit against the state to be able to access. What I found was an astonishing story, never told before, about the roots of institutionalization, special education, intelligence testing, forced sterilization and more.
I have the absolute faith that if we come together in this moment, one person at a time, we can help end the cover-up and erasure of a great tragedy. Alone, it will not be enough to change the difficult present in which disabled people, myself included, face such adversity. But we must continue to make inroads and push for the lasting and meaningful change that builds the world we want to see.