We look around us, at everything from George Floyd to global warming, and we understand that we live in a time of reckoning.
Not too long ago, Massachusetts presided over institutions to which a person with an intellectual disability or a mental health disorder could be sent and forgotten, sometimes for life. In the 1940s and '50s, the Walter Fernald State School in Waltham served as a site of medical experiments involving residents, experiments later recognized as gross violations of human rights.
In the late '60s, I was in college and spending a few hours a month as a Big Brother to a little boy who lived at Fernald. By then, extending back over a century, tens of thousands of people deemed to have developmental or mental health problems had been assigned to a variety of state schools and hospitals around Massachusetts. Almost none had been accorded the opportunity to give what we would recognize today as informed consent.
The 1970s saw a spate of lawsuits filed over the treatment of residents and patients. What followed was a series of landmark rulings by a federal district court judge that prompted significant improvements in the care provided or managed by what are now the Massachusetts Department of Developmental Services and the Massachusetts Department of Mental Health.
Despite the real reforms of recent years, the state hasn't done justice to the past. When people set out to learn what happened to family members, they find no one who stands ready to help. Paper records sit mouldering in scattered office files. Comprehensive accounts of state schools and hospitals and the lives lived within their walls have not been compiled.
To get things moving, I’ve filed a new bill to establish a special commission on the history of the Massachusetts state institutions that housed citizens with supposed intellectual or mental health disabilities. Twenty or so of these places were operating in the '70s, before "deinstitutionalization" became a watchword of reformers.
The commission idea is inspired by a deeply creative local initiative. In 2019, I met with my friend Alex Green and his students at Gann Academy in Waltham, in my district. They had launched a project to research and write capsule biographies of 298 people who had resided at either the Fernald State School in Waltham or the Metropolitan State Hospital in Lexington. Upon their deaths, the 298 had been interred in cemeteries on the grounds of the institutions, in graves that bore no names, only numbers.
The commission aims to honor the individuality of the lives led within the institutions and reclaim the fragile histories of the institutions themselves. It proposes to --
- Locate or better organize records and documents involving former state institutions and the individuals who lived in them.
- Make the records and documents available to former residents, their family members, and the general public, which effort is to be balanced by the protection of privacy.
- Compile comprehensive lists of the burial grounds situated on the sites of former institutions, and the individuals interred in each of them.
- Collect statements and recollections from former residents, and
- Discuss and propose a "human rights framework" for understanding and assessing the state's role in running these places.
More than a dozen leading disability and history research groups have prioritized the legislation for this session. When it comes to human and civil rights, they support the proposition that the past can be a guide to the present and the future, but only if we know it.