The upsetting online market for historic asylum patient records. - Slate

Summary

Sometime in the late 1950s, a 13-year-old girl with Down syndrome was admitted to an asylum in New York state. One of the first things that asylum authorities did was to take a photograph of her for an admission card. In this black-and-white photograph, she looks solemnly away from the photographer and holds up a board with numbers on it. The bleak little photo looks distressingly like a mug shot. On the back, the card included personal identifiers: her date of birth, the name of the person who had her committed to the children’s asylum, and other intimate details.

Sometime in the late 1950s, a 13-year-old girl with Down syndrome was admitted to an asylum in New York state. One of the first things that asylum authorities did was to take a photograph of her for an admission card. In this black-and-white photograph, she looks solemnly away from the photographer and holds up a board with numbers on it. The bleak little photo looks distressingly like a mug shot. On the back, the card included personal identifiers: her date of birth, the name of the person who had her committed to the children’s asylum, and other intimate details.

This may well have been one of the most traumatic moments in this child’s life, preserved on a little white card in a plastic sleeve. This intensely personal moment should have stayed a private matter, protected by the institution that admitted her, by the physicians who treated her, and the state that produced the laws that institutionalized her. Once she was no longer a patient, these records should have been cataloged by state archivists who would then regulate access to the extremely sensitive records. Instead, this disabled woman, who could very well be alive today, had her privacy, her pain, her trauma for sale on eBay.

And she is far from the only instance.

As historians of medicine, disability, and psychiatry, we were dismayed recently to find many items like these for sale on eBay. (We are not linking, for obvious reasons.) One seller had listed thick, hundred-page files of inmates in New York state asylums like Islip, dated mostly from the 1950s onwards. These files contained details such as physicians’ notes on diagnoses, test results, and therapy notes, in addition to accounts of violent treatments like electrotherapy and hydrotherapy. Some records recounted violent restraint and abuse in asylums. Indeed, one eBay seller used abuse as a kind of selling point for their records, noting in their write-up that the patient in question had been “Slapped by Nurse.” Another seller suggested that their logs, dating from the late ’80s to mid ’90s, “would “look amazing in a frame, or as a perfect backdrop for a cabinet of curiosities.”

We often work with precisely these kinds of records, but we try to operate within the laws and ethics that surround access to precious and private materials. Privacy legislation prohibits us from accessing some personal records that are held in official archives. We also have to think long and hard about how we use personal medical information in the histories we write. It is important, for instance, that we represent patients with disabilities or psychiatric illness in ways that do not continue to render them passive victims, or “freaks,” or objects of someone’s weird idea of amusement. Imagine our horror then, when we came across this slew of listings offering private, highly personal, and revealing medical records from various now-closed state psychiatric institutions in the state of New York.

Our immediate reaction was to do everything possible to try to have them taken down. Our history of medicine reading group helped us in this effort. First, we contacted eBay via their violation policy portal; we initially received no answer. Our next move was to contact a history of medicine library that might be interested in buying these things, just to have them removed, and that might either form a collection or donate items to the proper state archive. We were able to get in touch with one of the archivists at the location of the New York state archives that already has records from some of the hospitals in question. A helpful archivist let us know that these types of records still technically belong to the New York State Office of Mental Health and Office of People With Developmental Disability, which are in the process of transferring their holdings to the state archives in Albany. The archivist said that people in this office were “very distressed” by our findings and that they would step in to stop the sale of the items on eBay and have them lodged with the state archives.

But nothing changed. Some months later, the records were all still there, even more than when we first looked, and from different sellers. We were left with the dilemma of what to do. We had no desire to call them out publicly, highlight the listings, or send any more traffic to these sellers. We certainly didn’t want to see them sold, only to disappear into private “collections,” and then turn up in a thrift store in New Jersey in five years’ time.

While neither of us wanted to actively contribute to someone somewhere profiteering off these sales, one item concerned us especially: It was the record of admission for a young Black boy, which included his name and syphilis test results. The thought of the card being sold and “displayed” was disturbing, and we knew it needed to be removed as quickly as possible. One of us reluctantly bought that item, and we’re now working to donate it to the proper authority.

Earlier this month, we reached out to eBay by email again, seeking comment for this piece, and they finally had the files removed from the website. A spokesperson issued us this statement: “eBay has a strict policy against the sale of personal information, including medical records with personal contact information, Social Security numbers, or other similar sensitive information.”

But we have many remaining concerns and questions. Although the listings might be removed from eBay, the files themselves are still in the possession of people who do not have the ethical or legal right to profit off them. These records have not been returned to the archives of the institutions from which they were stolen, nor have they been traced to family members.

We also have many questions about how sellers acquired access, in the first place, to private medical records from state psychiatric institutions. In many states, there are very clear laws around the destruction (often achieved through shredding) and/or preservation of medical records that reveal such intensely private and potentially identifiable details.

From the 1960s, up until the early 21st century, large psychiatric hospitals like the ones that these records are from were gradually closed. The process of closing them down was chaotic—patients’ rights court cases and newspaper exposés found terrible conditions, substandard treatment, and people confined for many decades with no attempt at rehabilitation. For Black patients, their experience in these hospitals was shaped by a virulent racism responsible for decades of abuse and misdiagnosis. In their haste to close these places down and shield themselves from prosecution, state health departments were often lax in the collection and storage of records, especially as large, multibuilding sites were demolished for land sale or new development. This has frustrated and traumatized family members and descendants trying to find out information about their loved ones, or their own family medical histories. And now we have evidence that someone has found—or worse, possibly, stolen—records that should at least have been moved to state archives.

We were equally concerned about the way that sales of records like these contribute to (and are a part of) a disturbing voyeurism about madness and psychiatric institutions. These institutions and those who lived within them now are the focus of a stigmatizing subculture around madness and disability, intended to evoke prurient curiosity, fear, and disgust. Consider, for instance, asylum-themed Halloween costumes and TikToks, “haunted asylum” tours, and TV shows like American Horror Story or Nurse Ratched. When we continued digging on eBay, we found more listings catering to people who enjoy this subculture: asylum morgue doors, barbed wire, straitjacket buckles, and master keys from psychiatric hospitals, all of which clearly symbolize the violence, suffering, and control embodied by the asylum. E-commerce platforms like eBay might be facilitating these sales, but it is worth asking what the buyers are thinking.

Why are we so fascinated by what is clearly pain and darkness, even knowing that the people who look up at us from the ID cards and the files may well be alive today? At what point is madness and disability just disembodied “entertainment”? When did we lose track of the real human suffering behind these objects? Psychiatric hospitals are not haunted houses: They were very real places where people lived and died, often in terrible conditions, sometimes trying hard to get well and return to their loved ones. Psychiatric patients in the past were people, in the same way that you and I, with depression or ADHD, are.

People selling such records are quite simply (illegally) profiting off the suffering of others. What we want is for this practice to stop, once and for all. What we want is for e-commerce platforms like eBay to take more accountability for what they sell, some of which is related to children. We want proactive, not reactive, policies that protect disabled people’s privacy. And we want official archives and state departments to be accountable for their past bad practices, and to be more proactive about retrieving these items and keeping them safe. We especially want families to be able to find the records of their loved ones.

But more than that, we hope the public will stop thinking that disability and mental illness are a source of amusement. The people who lived and died in asylums and institutions in the past suffered in ways we can barely imagine. They are not ghosts or artifacts or objects to be hung on a wall. They are people who needed help, and their memory should be respected and preserved, not commodified on eBay.

State of Mind is a partnership of Slate and Arizona State University that offers a practical look at our mental health system—and how to make it better.

The upsetting online market for historic asylum patient records. - Slate
Photo Credit: Slate

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