Participants attend a workshop offered by Iqaluit’s Piruqatigiit Resource Centre where they sewed and listened to an elder speak about the importance of kindness, empathy and caring. (Photo courtesy of Piruqatigiit)
Project aims to unite Nunavut residents affected by FASD
“We wanted to create something that captures the fullness of people’s lives and zeroes in on the struggles but also the support”
An Iqaluit-based non-profit wants to change how Nunavummiut think of fetal alcohol spectrum disorder, or FASD.
The Piruqatigiit Resource Centre is putting together a book with photos submitted by those affected by FASD in the hope of building a supportive community across the territory.
“This project is a way to unite Nunavummiut impacted by FASD … a way to normalize and humanize life with FASD,” said Jennifer Noah, executive director of the resource centre.
The centre was established a year ago to support families and individuals living with the disability. It provides training to mothers, families and organizations on supporting those with FASD.
The life-long syndrome affects those exposed to alcohol as a fetus while in their mother’s womb. The symptoms range from challenges with memory retention to impulsive behaviour.
But Piruqatigiit faces an uphill battle, Noah said, because the syndrome is far more common than most people realize.
“FASD exists everywhere alcohol exists, we just don’t know about it,” Noah said.
About four per cent of the Canadian population is probably affected by the disorder, but that number is likely to be much higher in remote and rural areas.
Another challenge is to counter the negative messaging that often accompanies FASD, said Noah.
For example, Noah said women are often blamed, but that is neither fair nor productive. There could be contributing factors like the impacts of trauma, unknown pregnancies and abusive relationships that see women forced to drink.
There is also emerging research that suggests the disability can come from sperm and not the mother’s habits at all, said Noah.
Besides, shame only begets more shame and prevents people who need help from stepping forward, she added.
“At the end of the day, how do we want to value our women and girls?”
That’s why this photo project aims to encourage community members to provide women and girls with support and understanding, Noah said.
“We wanted to create something that captures the fullness of people’s lives and zeroes in on the struggles but also the support,” she said.
Piruqatigiit is encouraging Nunavummiut affected by FASD, whether or not it is diagnosed, to take photos of their everyday life. The centre has cameras it can send to any Nunavut community.
Some questions suggested by the centre to potential photographers include the following: What are your happiest moments? What do you see as something you’re good at? Who makes you feel loved, special or happy?
When families and organizations become aware of FASD as a disability, they can adapt, Noah said. And that can make all the difference, she added.
A key concept in Piruqatigiit’s approach, informed by Inuit Qaujimajatuqangit and elders, is tamatta, or circle of support.
“Each of us has a responsibility to look out for each other and promote harmony and well-being. Working together, being open, being warm and non-judgmental is helpful,” a pamphlet at the centre says.
If you are interested in more information or wish to submit photos, you can contact Piruqatigiit at photostoryproject@piruqatigiit.ca or (867) 877-4155.
We have had 0 diagnosis of FASD in our community. Certainly our CHR’s read a script on the radio but other than than that nothing. At the school, no awareness of anyone affected with FASD.