Portal into Indigenous tuberculosis history puts stories in new light

On a grassy patch of land along the highway that runs through Sioux Valley Dakota Nation, across the road from the radio station, lies an old Anglican cemetery dotted with weathered wooden crosses.

In one section, two rows of graves reach out towards the fences. Some are still marked; others have had their markers lost to grass fires or the turning of time.

In 2020, shortly after taking a job as a Sioux Valley land manager, Cheyenne Ironman brought a group of the First Nation’s elders to the cemetery. She listened as they shared what they knew about those two rows of graves, the last resting place for some 50 tuberculosis patients from communities near and far, who had died at nearby sanatoriums.

For the longest time, that was all the documentation Sioux Valley had about the graves: stories and memories. A community member who’d long tended to the cemetery had kept a list of the names he’d found on the crosses, so Ironman collected that, but otherwise the stories of those buried there long remained shrouded by time.

"A lot of what we knew were just stories that were passed down from when they were buried," Ironman says.

Now, that shroud is lifting. In 2020, Ironman met Erin Millions, research director with the Manitoba Indigenous Tuberculosis History Project, and told the researcher she hoped to restore the identities of the people buried on Sioux Valley land, and connect them with their families.

On Tuesday, the project launches a brand-new website (indigenoustbhistory.ca), a collection of resources that brings the history of Manitoba’s Indigenous sanatoriums and Indian hospitals to light, and aims to help communities track down information that has long eluded them.

The site includes hundreds of photos gathered from public and private collections, links to media and archival records, and a step-by-step guide for relatives searching for the fate of patients who never came home. That was what communities told project leaders they wanted most: an accessible trove of information, and help finding their loved ones.

"Unlike many academic research projects, we haven’t set out with a goal to accomplish," Millions says. "We have let communities and former patients lead us in the directions of the work they want us to do."

Through that direction, what started in 2019 as a six-month social media project has grown to become an ongoing effort, led by a team of researchers that have consulted with Indigenous communities and scoured archives across Canada for scattered records of the sanatorium system.

What even project researchers didn’t expect to find, Millions says, is just how deeply intertwined the hospitals were with the residential school system. The two were interconnected, and children were shunted between them. Some thought to have gone missing in residential school actually died in hospitals or vice versa.

So deep is the connection, Millions says, the schools and the hospitals must be understood as one system.

"Where they died impacts where they are buried," she says. "Often, their families weren’t told they were transferred or very young children were sent to a hospital and then to residential school. Finding where these children are really has to involve research around the hospitals. We’ve tracked so many of them."

Yet, while residential schools have received increased attention in recent years — thanks to survivor advocacy that pushed the creation of the Truth and Reconciliation Commission of Canada and a national research hub at the University of Manitoba — the history of the segregated tuberculosis hospitals, which operated between the 1930s and early ‘70s, remains under-examined.

There’s still no clear figure of exactly how many people went into the tuberculosis hospitals. Efforts to track that information down are stymied by Manitoba’s strict health privacy regulations: most Indigenous sanatoriums in the province were funded by Ottawa but run by the provincial Sanatorium Board, and so their records remain sealed under provincial law.

Thus, national research into Indigenous tuberculosis hospitals — which were largely run by the federal government — often leaves a black hole, when it comes to patients in Manitoba. That’s where the history project hopes to make a difference: by linking communities impacted by the system with whatever public and private records they can obtain.

Already, that approach is helping to bring answers to those who have long sought them.

In May, Sioux Valley welcomed Saul Day, of Sandy Lake First Nation in northern Ontario. Day, 76, never knew what happened to his mother, who was taken to Brandon Sanatorium in the early 1950s. Researchers spotted her name on an official record, noting she’d been buried in Sioux Valley.

The visit was meaningful: "To feel that closure, my inner child is well now," Day told APTN.

It was also meaningful for Sioux Valley, which has since developed a welcoming protocol for any other families whose loved ones are buried there.

"We definitely encourage people to reach out if they’re wanting to come visit the cemetery," Ironman says.

For the Manitoba Indigenous Tuberculosis History Project, the new website is one part of an ongoing process.

Project members plan to continue advocating on behalf of families, for more Indigenous access to records held in non-Indigenous systems; and they hope to keep gathering research to build a more complete picture of the lives that moved through the sanatoriums.

"What we have done is such a tiny fragment of what there is still to understand about this," Millions says. "There’s much, much more to do."

melissa.martin@freepress.mb.ca