Historical trauma and distrust in health-care system persist among many Inuit people today

A History of Colonial Human Rights Violations

Toronto Star: Joshua Idlout has never had tuberculosis, but the disease has cast a long shadow over much of his life. As a six or seven-year-old Inuk boy passing through Resolute Bay, the second northernmost community in Canada, Idlout says he would experience taunts and beatings from other children; he never understood why the other kids singled him out for abuse.

“It wasn’t until after I was told the whole story, that these were actually my half-siblings that used to be told to beat me up, to hurt me,” Idlout said during a testimony at the Qikiqtani Truth Commission, which scrutinized the impact of government policies forced upon Inuit people from 1950 to 1975.

Idlout’s experience speaks to the prevalence and effect of tuberculosis (TB) in the North. It’s a disease that doesn’t feature prominently in the Canadian consciousness, but is linked to some of the darkest chapters in this country’s history. And while it’s been nearly eradicated among non-Indigenous people born in Canada, it continues to cause public health crises in Indigenous communities.

As a teenager, Idlout learned that his biological mother was forced to put him up for adoption when her husband returned home from being treated for TB and discovered she was pregnant. The man didn’t want his mother to give birth to him, and though she did, her husband resented Idlout’s existence and instructed his half-siblings to bully him.

Idlout was raised by his father, who was an RCMP officer, and never formed a relationship with his biological mother. He said finding out about his true bloodline through whispers in the community was something he struggled with for many years. “To date I still have feelings of anger and hopelessness and sometimes I still can’t find the underlying reason for that,” Idlout told the commission in 2008.

“This hardship that was undertaken by our parents when they were removed and relocated to another community — we the children felt that impact.” TB left a mark on both sides of Idlout’s family; his adopted mother, in Iqaluit, was also relocated to Hamilton for TB treatment.

The legacy of TB in Canada is about loss of life, but also health discrimination, historical trauma and distrust in the health-care system that persists among many Inuit people today.

Canada’s failure to eradicate the ancient disease among its most vulnerable populations is directly linked to its neglect of Inuit communities in the North, according to health experts and Inuit leaders.

“I don’t understand when an Inuit crisis is an actual crisis for Canada or the Canadian government,” said Naten Obed, president of Inuit Tapiriit Kanatami (ITK), an organization that represents Inuit nationwide. “It really doesn’t make a lot of sense to me. It certainly seems very personal; it does not seem to be based on any kind of statistical information or health equity.”

TB is a disease that is caused by bacteria that spreads through airborne droplets. It mainly affects the lungs and comes in two forms: latent or sleeping TB, which is when the bacteria is inactive in the body and doesn’t cause symptoms, and active TB, which is contagious. Typically, the bacteria go dormant in a mature body with a well-functioning immune system. Children, especially those under five, are at greater risk of being unable to effectively fight off the disease. It causes intense fatigue, weight loss, fever, night sweats and can lead to chest pain and a severe, sometimes bloody cough.

TB has been called “a social disease with medical consequences” because its primary drivers are related to social and economic inequities — the rates of TB in the North are connected to poverty, inadequate and overcrowded housing, food insecurity and barriers to accessing health care, such as remoteness but also insufficient infrastructure.

In Nunavut, the largest territory in the Arctic, more than half of residents live in social housing, which is often overcrowded — it’s not uncommon for 20 people to live in a four-bedroom home. Housing can be so crowded that residents need to sleep in shifts.

Food security is a major concern because the cost of groceries is on average twice as high as in the South. Poor nutrition can be a cause for reactivation of latent TB. About 60 per cent of residents over 15 in Nunavut smoke, which increases the risk of respiratory tract infections and TB complications, compared to the Canadian average of about 15 per cent.

Overall, the life expectancy among Inuit is 10 years lower than the Canadian average.

The health disparities faced by Inuit stand out not only in Canada, but across the globe — Inuit in Canada experience among the highest rates of lung cancer and suicide in the world. “Our rates are just categorically different than most other Canadian populations,” Obed said. “And I think Canadians expect that if there’s a specific part of a population that suffers to a greater degree from a particular health outcome, that there will be additional investments … to ensure that there is equity,” he added. “For Inuit, that equation doesn’t exist.”

At the time of Confederation, TB was the leading cause of death in Canada. It tore through the Indian residential school system, often due to neglect of sanitation and ventilation in overcrowded dormitories.

These days, the overall rate of TB in Canada is low, but some communities in the Arctic and places such as northern Winnipeg have recorded some of the highest rates of TB in the world. In 2018, it was reported that Inuit suffer from TB at a rate close to 300 times higher than non Indigenous Canadians born in Canada, although the numbers have since fallen.

A genetic study published by McGill University in 2015 found that TB arrived in the Arctic around 1919 and that Inuit had no prior contact with the disease prior to the establishment of trading posts.

In the 1950s, when Idlout was born, TB was rampant in the Arctic — at that time, it’s estimated that about one in three of all Inuit were infected with the disease and one in seven were in sanatoriums in the South for treatment. Those treatments often lasted for years. Families were torn apart, couples were separated and children were taken and placed into treatment facilities separate from their parents — sometimes thousands of kilometres apart. Many also experienced culture shock because Inuktitut was spoken by few or no one at all.

Sometimes, families would never be informed that their relatives died during treatment, and their loved ones would get buried in unmarked graves.

In 2019, the government launched Nanilavut, Inuktitut for “Let’s find them,” an initiative to help Inuit repatriate the remains of their lost loved ones who perished during TB treatment. Idlout said he’s grateful his mother did make it home, but the forced relocation put a strain on the family, as well as on her connection to their culture and traditional way of life.

“Her recovery was kind of hard, she’d been institutionalized for about three years so it was kind of difficult for her to adjust back to being an Inuk,” Idlout said. “How my father had to adjust, I don’t know. He didn’t know how she was coming back or when she was coming back because they weren’t really informed on these things.”

Idlout only met his biological mother on one occasion for about three or four hours. “She didn’t show any emotion,” he recalled. “It must have been hard for her … I can still feel the hurt she felt.”

On her death bed, Idlout received a call from her and she said she wanted to see him in her last moments. But he couldn’t make it because of flight issues. “I never got to say goodbye to her. But she did call for me, so from that, I knew she loved me,” Idlout said.

The forced separation of families, and the subsequent loss of language and culture, is part of the painful legacy of TB in Canada — which the federal government apologized for in 2019. “There’s a history of colonial human rights violations that underpin the association with this illness. And that still is something that we can’t discount today,” Obed said. “This is something that should be a part of a national conversation,” he added. “It certainly has not been in relation to things such as clean drinking water on reserves.”

In his apology, Prime Minister Justin Trudeau said the government’s approach from the 1940s to 60s was “colonial and misguided.” “While Canada was busy adopting the United Nations Universal Declaration of Human Rights, it was treating people throughout Inuit Nunangat as inferior, identifying Inuit with numbers instead of names … While the government was hard at work creating universal health-care, it was forcing Inuit into settlements where disease and infection ran rampant,” he said.

He added that while the government responded “decisively” to TB in the South, its approach to TB in the North “wasn’t to show compassion or care, but to separate families and ignore people’s rights.”

Despite the strong words, Inuit leaders like Obed say the government is moving too slowly on the issue, especially in light of a 2018 joint commitment the federal government made with ITK to halve rates of TB in the Arctic by 2025 and eliminate it completely by 2030.

In the most recent federal budget, the government pledged $16.2 million over three years to reduce rates of TB in Inuit communities. The “modest investment” only represents roughly one quarter of the amount ITK identified for the next phase of TB elimination and does not meet the joint commitment, the organization said in a press release. “We’re a long ways away from the elimination goals and targets that we had pledged to work on with the federal government,” Obed said.

The effects of TB continue to be felt in the North today. Last month, Pond Inlet, a small Inuit hamlet of about 1,500 on Baffin Island, declared an outbreak after five cases were identified. Idlout, now a hamlet councillor and deputy mayor of Pond Inlet, said it’s frustrating the disease continues to impact people in his community. “If Canada feels that it’s OK to live with an outbreak like TB and doesn’t take it seriously, they can do what they did back in the ’50s and ’60s — institutionalizing and hospitalizing people and taking families away from family members,” he said.

Great strides have been made in how TB is treated in the Arctic since it reached epidemic levels in the 1940s and 50s — treatment is far more accessible in urban centres, but there are still challenges in accessing health care in remote areas, especially during winter.

Other developments include a rapid TB test that has been in use since 2012, contract tracing for all cases of infectious TB, and TB screening for school-aged children. The introduction of digital X-rays, versus plain film X-rays that had to be sent to radiologists in Southern Canada for analysis, has reduced X-ray turnaround time for TB detection from two to three weeks to a matter of days. And in 2017, Nunavut hired its first full-time TB nurse educator.

Globally, there are new promising treatments that could reduce the standard treatment regimen from six months to eight weeks, but there are still barriers in getting the required drugs to Canada. Despite these advancements, the fact that TB had been mostly eradicated among the Canadian-born population, but still rages in some Inuit communities, shows that Canada is failing to meet its responsibilities to Inuit, leaders say.

“Ultimately we are Canadians,” Obed said. “And as Canadians, we expect a level of equity that just hasn’t been a shared expectation from the rest of Canada towards Inuit.” ‘‘ I don’t understand when an Inuit crisis is an actual crisis for Canada or the Canadian government.