TB diagnosis once meant a lonely confinement Patients sent hundreds of miles from home to recover from illness

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Loneliness and isolation usually accompanied a diagnosis of tuberculosis for Indian and Inuit people, who were forced to spend their recovery times in sanatoriums hundreds of miles from home.

Before effective antibiotic treatments came into use in the 1960s, that stay could last years, and Indigenous peoples were usually surrounded by a strange environment and people who did not even speak the same language.

In western Canada, aboriginal TB patients were sent to the TB sanatorium at the Charles Camsell Hospital in Edmonton. The average length of stay for the patients, some from as far away as Grise Fjord in the Canadian Arctic, was 28 months. (One male patient spent a total of 11 years at the hospital.)

To help pass the time and earn a little spending money, patients were encouraged to take part in the arts and crafts program as occupational therapy. More than 400 artifacts from this program were collected by the Camsell over a 40-year period, including carvings, clothing, jewelry, paintings and drawings. That collection now belongs to the Provincial Museum of Alberta, whose curatorial staff have produced the book Soapstone and Seed Beans.

The book is "a chapter in the history of tuberculosis treatment in Canada," writes Ethnology Curator and editor Patricia A. McCormack.

Its release is particularly timely in light of the recent increases in TB cases among Aboriginals, she added.

In 1989, for the first time in decades, Statistics Canada noted a 4.5 per cent increase in the rate of TB, which almost one-fifth of those cases among Aboriginal people. The emergence of a drug-resistant strain, linked to improper use of antibiotic treatments and HIV, has startled and alarmed health care workers across North America, said Dr. David Penman, an epidemiologist with Health and Welfare Canada. He was addressing a meeting of the Aboriginal Nurses Association of Canada.

While Soapstone and Seed Beads is in part an examination of the collection it is also a look at the circumstances surrounding TB treatment at the time and the effects this treatment had on Aboriginal and Inuit patients.

the 1930s, TB had reached epidemic proportions among Aboriginals and Inuit. Between 1930 and 1945, the mortality rate for Indians was about 800 per 100,000 people, compared to 50 per 10,000 in the general population. Among the Inuit that figure was as high as 1,000 per 100,000 in the 1940s.

"It shattered communities, "there is no community that didn't have families disrupted by TB," said McCormick.

Assistant curator Ruth McConnell, who co-authored the book with Annalisa R. Staples, put it more strongly: "There's probably no families that haven't been scarred by TB."

Dr. G.J. Wherrett, secretary of the Canadian Tuverculosis Association, conducted a survey and produced a report on health conditions in the MacKenzie Delta in 1944 which also helped prompt goverment action.

Starting in 1947, X-5ayu surveys were sent across the north to identify infected people, who were institutionalized immediately, 75 to 80 per cent of them in southern centres.

Not all patients went willingly. Courts could order people to report for treatment if they left the hospital against medical advice.

An artificial leg in the Camsell colleciton is an example of how far people would go to avoid hospitalization. The original owner wore it until it was falling apart and seemed to be beyond practical use. He refused to go to hospital to have a new one fitted because he had active TB and didn't want to be admitted.

The hospitalization was often an experience that altered their lives permanently. Inuit artist Kenojuak from Baffin Island recalled her excitement at the prospect of being X-rayed for the first time in 1946 because the arrival of the annual sea-lift was also a chance to reunite with friends and family. Kenojuak was later hospitalized in Quebec for TB, leaving behind a husband and two small children. During her three-year absence, both children died.

Forthe family left at home, the absence of a spouse often meant a threat to survival. Many people still lived traditional lifestyles, surviving by hunting and trapping, and survival was simply not possible with one less person contributing. Sometimes the sick spouse had to be replaced. This caused a great deal of disruption and anguish when the patient recovered and returned home.

For children, prolonged separation from their cultures and languages made returning home difficult. One child returned home after years in the hospital and couldn't remember a word of his language. He wouldn't obey his parents and eventually they sent him to a residential school because he couldn't fit into the community.

Joe Koaha, an Inuit boy, learned Cree in the hospital and was unhappy when he went home to Cambridge Bay.

"I don't like Eskimos," he said. "I can't understand what they are saying. I speak Cree."

Because of language difficulties and the fact communications between hospitals and families in remote areas were almost non-existent, some families saw members go south, never to return.

"A lot of people didn't come home," co-author McConnell said. "They just ended up dying down south and the families didn't know where."