The former Hudson River State Hospital in Poughkeepsie. The psychiatric facility, closed since the early 2000s, suffered a substantial fire earlier this month.
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Whether you know it or not, chances are that someone in your family tree lived with mental illness or a developmental disability. If that ancestor lived in the United States during the 19th or 20th century, he or she may have spent time in a state-run insane asylum, state hospital, state school or another similar institution.
These institutions kept detailed records that documented names, histories, diagnoses, treatments and lives. Today, those records sit in state archives across the country. They are pieces of our shared history — records that belong not only to the state, but to American families and communities seeking to understand their medical histories.
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Yet in most states, families and researchers are denied access to these documents, even as organizations such as the American Historical Association, the Disability History Association and the American Association for the History of Medicine support opening them.
It doesn’t have to be this way. A number of states, including Pennsylvania, Ohio and Maine, have laws that enable much more liberal access to records. In New York, a bill to allow greater access overwhelmingly passed both the Senate and Assembly and will soon be delivered to Gov. Kathy Hochul. We urge her to sign it and put an end to blanket denials of these valuable windows into history.
We have experienced these denials firsthand.
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Ryan Thibodeau, a clinical psychologist at St. John Fisher University who spearheaded a memorial to former state hospital patients resting in unmarked graves, was denied access to their names.
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Alexandra Lord’s experience illustrates that of countless descendants. In 1893, Dr. DeWitt Crumb declared her great-grandmother, Esther Lord, insane after a suicide attempt. He then committed Esther to New York state’s Willard Asylum for the Chronic Insane.
One hundred and thirty years later, Alexandra, seeking to understand her own father’s suicide and its relationship to her family’s multi-generational history of suicide, requested Esther’s medical records.
New York denied her request, saying that her “status as a great-granddaughter of a former patient at the Willard and St. Lawrence State Hospitals did not” merit access, according to state law. Allowing a descendant or other relative access to medical records would, the state claimed, be a violation of Esther’s privacy.
Never mind that Esther’s suicide attempt and subsequent institutionalization were, as was common in the 19th century, reported in great detail in her local newspapers. Never mind that these newspapers are widely available for free online. Never mind that publicly available census records indicated that she was an inmate in an asylum. And never mind that she had been dead for over 90 years, long before the concept of patient privacy existed.
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Opponents of releasing such records believe that allowing access would stigmatize individuals like Esther. But her hospitalization is not nearly as stigmatizing as policies that render her invisible.
Across the country, descendants like Alexandra are routinely denied access to records of both the close relatives they loved and more distant ancestors whose circumstances are only question marks in family stories. And individuals like Ryan are denied access to information that would allow them to memorialize the forgotten who were institutionalized in their communities.
People seek access for many reasons. Some want to better understand the origins of their own health struggles. Others hope that expanded knowledge of an ancestor’s medical history will inform their own medical care. Still others seek the whereabouts of an ancestor’s unmarked grave.
But most aim to breathe life into an ancestor whom history has forgotten, to resurrect them by learning and sharing their story.
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The consequence of thwarted access to historic medical records? Glaring, painful holes in family stories and medical histories that cannot, and may never, be filled.
Making records inaccessible also means that these records may become vulnerable to the inevitable budget cuts that plague public archives. It may seem inconceivable that records this important could be discarded, but hospital records from places as central to American history as Ellis Island have already been lost.
We hope that Gov. Hochul will follow the lead of Gov. Maura Healey of Massachusetts, who last December signed into law a bill that enables public access to institutional records over 75 years old. “It’s crucial that family members have access to the records of their loved ones from their time in state institutions,” Gov. Healey said.
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After all, these stories belong not just to the states that institutionalized these patients, but to their families and communities. Shouldn’t we, and not the government, own our history?
Alexandra M. Lord is an Albany native. Her book, “In the Wake: Suicide and the American Family,” is forthcoming from the University of Chicago Press. Ryan Thibodeau is a professor of psychology at St. John Fisher University in Rochester.