New Inuit-language glossary hopes to spark dialogue on cancer care
“We’re trying to make sure Inuit are getting this information in a way they understand"
With more Inuit being diagnosed but also surviving cancer, organizations across the Inuit Nunangat regions saw a need to update how people talk about the disease.
In a sign of evolving times, Terry Audla, the president of Inuit Tapiriit Kanatami, took to Twitter last month to announce the new Inuktuk term for cancer: kagguti, which comes from the word kagguaq, meaning “knocked out of natural order.”
It replaces an earlier and more sinister term annia aaqqijuajunnangituq, which means” incurable ailment.”
Kaggutiq is the new glossary published by Pauktuutit Inuit Women of Canada, which includes 252 new Inuit-language terms to describe all aspects of cancer, from diagnosis to treatment.
Pauktuutit responded to the need for more modern terminology, first raised at the October 2009 National Inuit Policy Forum on Sexual Health.
“One of the things that came out is that, in some dialects, the terms for HIV and cancer were the same,” said Pauktuutit’s manager of health policy and programs, Geri Bailey.
“And they both suggested that you have a bug and you’re going to die. How can you seek the proper care if it has a fatalistic tone to it?”
In other cases, Bailey said a single Inuktitut word was used to describe a condition that took an entire paragraph to explain in English.
So Pauktuutit hosted the Inuit Cancer Project in July 2013, a literacy forum gathering Inuit leaders, health care providers and language experts to produce a “living cancer glossary” in six languages and dialects.
The glossary covers dozens of basic terms for symptoms and side effects terms that have become more prominent in cancer research and care in recent years, like the human papillomavirus, or the more technical names for treatments, like magnetic resonance imaging or radiation therapy.
The need for updated vocabulary is directly linked to the growing need for cancer care in Inuit regions — cancer is the second leading cause of death among Inuit populations.
Compared with the general population of Canada, Inuit suffer a higher incidence of lung, liver, oesophageal, nasopharyngeal, and salivary cancer.
Death rates from cancer in Nunavut, especially among women, are particularly high compared with rates reported in other provinces and territories.
Nunavut commissioner Edna Elias says the glossary is timely for that and other reasons.
“As commissioner, it’s been my passion for the last couple of years to promote healthy lifestyle living to avoid the risks of cancer and to fundraise for breast cancer research,” said Elias, who lost a sister to cancer about five years ago.
Elias is known for her work founding and taking part in the Women in Action, Steps of Hope walk and fundraiser for cancer research.
“As I near the end of my term in the position and plan to return to interpreting and translating services, the glossary will be of much benefit for words that did not exist in Inuinnaqtun,” she said.
“Technical terms in the English language have been explained so we, in the field of languages services, can now be speaking and using the same terminology and definitions.”
The glossary’s authors and advocates hope the new tool will also lead to the increased use of the term “cancer survivor”, translated as Inukinuhimaktok aneagu-tikalikniga kagutimik naonaekaktilogo in Inuinnaqtun.
“The intent of the glossary is that Inuit are better informed,” Bailey said. “A diagnosis of cancer is a traumatic experience and we often revert to our mother tongue in moments like those.”
“The hope is that the medical professionals can use the glossary to help patients understand.”
The glossary has already been provided to health centres across the North, in some southern settings and Pauktuutit hopes the glossary can be used in health training programs in institutions like Nunavut Arctic College.
The organization has already distributed 500 copies of the glossary, although Bailey points out that, as a living document, “it’s by no means complete.”
“Inuktitut terms are evolving all the time in the field of health, there are constantly new terms coming up,” she said. “We’re trying to make sure Inuit are getting this information in a way they understand.”