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Nunavut organization seeks to shape new attitude about FASD among Inuit

"We feel it's important to celebrate this day because people and families affected by FASD experience multiple barriers, oppression and stigma," said Jennifer Noah, Piruqatigiit's co-executive director, on FASD Awareness Day.

'We want to uplift the lives of people who are impacted by FASD': Piruqatigiit

A group of people smile for the camera in front of a sign for the Piruqatigiit Resource Centre.
The Piruqatigiit team at Friday's FASD Awareness Day event. Noah Noah, one of the centre's cofounders, is in front; behind him are Tina Mary Kunilusie, Levi Jr. Eegeesiak, Trina Yank, Jennifer Noah, Sheila Higdon and Chris Alookie. (Submitted by Piruqatigiit Resource Centre)

Celebrate, don't condemn, those with FASD: that was the message highlighted last Friday by an Iqaluit-based non-profit.

Friday was International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day. Piruqatigiit Resource Centre, which provides Inuit-informed resources, programming and advocacy on FASD, invited people to join them for country food in celebration.

"We feel it's important to celebrate this day because people and families affected by FASD experience multiple barriers, oppression and stigma," said Jennifer Noah, Piruqatigiit's co-executive director.

"We want to uplift the lives of people who are impacted by FASD and to remind them that they are not alone and that their lives matter."

The awareness day historically centred solely on FASD prevention, she said.

"While of course we support prevention efforts and messaging, we want to ensure that people and families affected by FASD on the other side of the prevention conversation are not forgotten or erased," she said.

A woman holding a pen smiles at the camera. In front of her, a book is open to its first page.
Adelle Noah, the co-author of Inuuqataugumajungattauq – I Want To Belong signs copies of her books at the Friday FASD Awareness Day event in Iqaluit. Her book talks about Nala, a young girl who lives in Nunavut and is born with FASD. (Submitted by Piruqatigiit Resource Centre)

Piruqatigiit's Inuit Advisory Circle decided on Najjiangulutiit Imialukmut Ittaqtausimajuut as the appropriate term for FASD in Inuktut, because it uses "clear terms that promote dignity."

The literal translation would be najjiangulutiit (while during gestation), imialukmut (by alcohol), ittaqtausimajuut (have had their blood affected or added to).

Noah said Piruqatigiit wants to get away from framing FASD as being "caused by maternal alcohol use" and saying instead FASD is "caused by prenatal alcohol exposure."

As well, it wants to avoid saying: "FASD is 100 per cent preventable."

This statement oversimplifies the complex issue of substance use during pregnancy and increases stigma for birth parents and people affected by FASD, Piruqatigiit says.

Harm reduction messages are less stigmatizing, such as: "It is safest not to drink alcohol during pregnancy."

Five pairs of feet in red shoes create a star shape on a wooden floor.
Red shoes are part of a global FASD Awareness campaign, initiated by RJ Formanek, who has FASD and is the cofounder of advocacy group Red Shoes Rock. (Submitted by Piruqatigiit Resource Centre)

The Kitikmeot Friendship Society in Cambridge Bay has linked up with Piruqatigiit to also provide FASD-specific advocacy, service co-ordination and programming as well as a pediatric FASD clinic.

Piruqatigiit is now also providing a similar FASD assessment clinic for the Kivalliq and Qikiqtani regions.

"If our two non-profits did not find alternative sources of funding and practitioners to help us create these clinics, we would continue to see Nunavummiut on out-of-territory wait lists, for three-plus years ... at a time," Noah said.

Pauktuutit Inuit Women of Canada also has its Beauty in Brain FASD awareness campaign, launched in March as "an opportunity to see things from a new point of view."

"There's beauty in brain differences," Pauktuutit says in the campaign.

Pauktuutit also points to the impact of colonization on FASD — in particular, how alcohol in Inuit Nunangat is tied to the arrival of settlers, assimilation policies and intergenerational trauma.

Meanwhile, it's hard to put a number on how many Nunavut residents have FASD because there are no prevalence studies conducted among Inuit, George Hickes, Nunavut's health minister at the time, said in 2019.

According to some recent data, the current best estimate of FASD prevalence in the general Canadian population is four per cent, Hickes said, in response to a question raised in the Nunavut Legislature.

"Using this estimate, approximately 1,500 Nunavummiut could live with FASD," Hickes said. "This would be a conservative number as the estimated prevalence of FASD is higher in special populations such as children in care (three to 11 per cent) and adults involved in the justice system (10 to 23 per cent)."

Noah said many people are surprised to learn FASD is so prevalent.

"We don't have any clear data collection in Nunavut at this time and we don't want to make assumptions or sensationalize FASD in any way," Noah said.

"But what we do want to emphasize is that FASD is more common than Down syndrome, cerebral palsy, Tourette syndrome and autism combined, yet we do not recognize or provide the same level of compassion, dignity and financial support to those who are affected."

ABOUT THE AUTHOR

Jane George is a reporter with CBC Nunavut. Prior to August 2021, George worked at Nunatsiaq News for more than 20 years, winning numerous community newspaper awards.

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