“Fear of a name increases fear of the thing itself.” ~ Albus Dumbledore
One of the issues the research team for the GMM Project dealt with early on in our data collection involved something none of us had had to deal with before: what are the ethics of writing and publishing about mental illness over 150 years ago? Should the names and stories of the patients we have found be reclaimed in our publications, or should they be changed and anonymized before any public recounting of their experiences? Does altering a patient’s name in the interest of privacy or doctor-patient confidentiality demonstrate sound scholarly practice, or does it silence those who were already treated as social outcasts?
An extremely helpful article for the entire team has been David Wright and Renée Saucier’s, “Madness in the Archives: Anonymity, Ethics, and Mental Health History Research.” In that piece, they ask many of the questions that we have faced: what rights do the deceased maintain over their medical records? What ethical obligations do researchers have? Do professional duties to anonymize names diminish the further back one goes in time? Do the designations of ‘lunacy’ and ‘idiocy’ that exist on publicly-available census records also require professional discretion in academic publications? Is the concern over confidentiality now giving way to a new emphasis on the agency that naming can bring to the ‘forgotten’ and the ‘vulnerable’ (Wright and Saucier, 74)?
On top of these questions regarding elapsed closure periods and physical access to documents are the effects created by digitization – a godsend in these days of COVID-19 – and archives’ holdings become more accessible online for the general public. Madness is not the sole property of the asylums: important aspects of mental illness can be found in private letters, courts of law, prisons, jails, public inquests and parliamentary papers, government administration documents, and census records (Wright and Saucier, 80). Many of these are already online and visible to anyone with an internet connection. Is there a difference in methodology if a document discussing ‘lunatics’ comes from the government rather than the asylum?
Archival closure periods were originally designed to protect sensitive or private information. One-hundred years is the standard for medical records, based on the Public Records Act of England and Wales in 1958. The closure period ensures confidentiality for a given time during which living memories of the person in question most likely will elapse. But, as Wright and Saucier highlight, that same closure rule also avoids tricker questions about expectations for posthumous privacy beyond one-hundred years (68).
When I was at the Archives of Ontario in Toronto in late 2019 to research the Provincial Lunatic Asylum and the Rockwood Asylum for the Criminally Insane, I was informed that I could not access anything from the twentieth century. The fact that I wanted documents from the 1840s to 1860s made my life much easier. Time was obviously the critical factor – but what does time do, exactly? Are stories of people chained in basements or suffering from typhus and cholera any less horrific because they happened in 1847 rather than 1947?
When asylum records have been published, there seem to be two general methodologies: naming or anonymizing, the latter being by far the more popular choice in many academic publications. There are varying degrees of anonymity: entire pseudonyms, partial, exclusion of medical record numbers, or using invented codes from a spreadsheet so that ‘Bridget Kelly’ becomes ‘Belinda Kennedy’ or Case #17324. This adoption of neutral identifiers theoretically allows other academics to access the archives and verify primary research, as not disclosing any nominal information would fly in the face of basic standards of scholarship, but it removes the names themselves.
When weighing the position for the GMM Project’s approach, the thoughts of Professor Jacalyn Duffin from Queen’s University – quoted at length in Wright and Saucier’s article – have been extremely important. She directly questions the practice of anonymizing asylum patients from the nineteenth century – in her case those from the PLA in Toronto:
History is difficult enough without make-believe; imposing a double-standard of identification, based on late twentieth century determinations of confidentiality and of what diagnoses might be (or would have been?) ‘sensitive’ to a mid-nineteenth century person, borders on hubris…. I believe these personal tales of fear, misery, injury, and death, now all more than one hundred years old, are not shameful – whatever the diagnosis may have been; they are an intrinsic part of the social history of Ontario, which deserves to be told fully.
~ Jacalyn Duffin, Langstaff: A Nineteenth Century Medical Life (Toronto: University of Toronto Press, 258-9)
So much of this seems to come down to a question of shame. Who feels ashamed? By what? For how long? Many publications cite wanting to avoid embarrassment for living relatives as a reason to anonymize historical patients’ names – suggesting that a living person could be stigmatized or traumatised by an ancestor’s diagnosis or treatment. This same consideration does not exist with many online archival databases: there are no disclaimers on the Library and Archives Canada website about what you may find on a given page of the 1851 census, where named returns for ‘blind, deaf and dumb’, ‘idiot,’ ‘lunatic,’ and ‘person of unsound mind’ are easily visible. Foucault (him, again!) cited social embarrassment as a key reason for why asylums were built in the first place: “confinement is explained, or at least justified, by the desire to avoid scandal” (Foucault, Madness and Civilization, 66).
The GMM Project faces the dilemma of wanting to reclaim unknown histories of the Irish in Canada and also a ‘duty to protect,’ especially since this is our first joint venture into the medical humanities. After having each of them read the Wright and Saucier article, I asked the team members for their thoughts.
Sadie, at first, was in favour of anonymizing any names we use. She believed that medical records are medical records, regardless of the time period. However, she later changed her mind, arguing that, so long as the original closure period of one-hundred years has been respected, further alterations could only confer a sense of shame about the patients.
Giselle wrote the following in an email exchange with me: “I believe anonymizing (or even using pseudonyms) would be detrimental to the goals of our project” which “seek not to define nineteenth-century patients solely based on their over-a-hundred-years-old diagnoses, but to humanize them while bringing to light their struggle without victimizing them.” She felt that changing patients’ names “maintains mental illnesses as something shameful that should remain hidden, potentially forever. It is our duty to see the opposite outcome.”
Gabrielle’s opinion was definite: “I argue for our synthesis to use our subjects’ names. Especially in the current cultural climate, I think that there is power in using a name in defiance of pressures that seek to systematically reduce a life to a statistic, or summarize the experience of illness with the diagnosis of a professional…. [W]e need to use care in dealing with the various identities that people assumed (or that were imposed on them)…to question the language used by those writing about mentally ill patients, and, finally, to acknowledge the personhood of historical subjects by use of their names.”
In my prior publications, I never hesitated to use the names of real people, whether they were involved in court cases, wartime atrocities, ships’ lists, or social violence. In Violent Loyalties, I named members of the Shiners gang along the Ottawa River who were accused of murder and rape in the 1830s; I never contemplated changing those names in case any later descendant of theirs picked up the book. For me, not naming someone, or un-naming them, does imply fear or shame or both. I don’t think anyone in our project deserves to be made into a Voldemort.
What that means then is that, when we write posts or Tweets or share images from our research, you will see patients’ real names. All of our project’s patients fall well outside of the hundred-year archival closure rule, which is a standard that this research team fully supports and honours. Beyond that, however, and certainly for individuals held in pre-Confederation colonial asylums, we feel it is our duty to bring these people to life again with a simple but, we believe, fundamentally important act: we use their names.