Researcher developing online tool to help find missing Indigenous tuberculosis patients
U of W researcher wants to empower families, communities to navigate records, government agencies
A University of Winnipeg researcher is developing an online research tool to help Indigenous communities and families find missing tuberculosis patients who were sent to Manitoba hospitals and sanatoriums but never came home.
Anne Lindsay is a post-doctoral fellow at the University of Winnipeg and will be working with the university's Manitoba Indigenous Tuberculosis History Project on the initiative.
Lindsay has spent several years working as an archivist and researcher. Her experience includes working with the Truth and Reconciliation Commission. Some of her work has involved helping families research connections to residential and Indian hospital schools, and find where missing residential school children may be buried.
Due to privacy laws, the tool won't be a database of records of missing tuberculosis patients, but will instead empower families and communities to do their own research, Lindsay said.
"I think it needs to be something that is not just a set of links, but that gives people some information about where to start looking and how to use the information from that to get other information, and sort of helps to give people a bit more of a step-by-step understanding of how to perform their own research," she said.
Doing this on your own can be difficult, since it's often unclear which government agency might hold those records, or which records you would even be looking for, Lindsay said. The hope is that this new guide will help demystify that process, she said.
"What we're trying to do is to come up with a web guide that will support people, not only by identifying the kind of very broad, different places that you might need to look for these sorts of records, but also to present it in a way that is usable," she said.
"Because it can get very complicated and a bit overwhelming, sometimes with the different places and different agencies you need to look at."
In the first half of the 20th century, tuberculosis on reserves was a significant problem. Under the Indian Act, it was legal to seize kids suspected of having tuberculosis and send them to sanatoriums — sometimes directly from their residential school.
- As Manitoba fights one of Canada's highest tuberculosis rates, researchers say better data offers an antidote
Lindsay says it is hard to quantify how many missing Indigenous tuberculosis patients there might be, but said it's an issue that has come up quite often in the Indigenous tuberculosis project's discussions with families and Indigenous communities.
"It's difficult to really have a statistic of this when you don't have an overall statistic of how many times that happened compared to how many times people were informed," she said.
"But certainly the people who contact me, that is their story."
At this point Lindsay says she is reaching out to different First Nations and other stakeholders to see what they would find most helpful. She's also trying to find different groups and individuals who have already done their own research on this issue to see if they can help.
You can contact her at firstname.lastname@example.org. The website is expected to be published by January 2022.