Canada: Calgary celebrates Fetal Alcohol Spectrum Disorder Awareness Day
By Vanessa Hrvatin
September 9, 2018
At 9:09 a.m. on Sunday, a crowd of more than 50 people sat silently in Calgary’s North Glenmore Park.
It was the ninth minute of the ninth hour on the ninth day of the ninth month, and the community took a moment to recognize people around the world affected by fetal alcohol spectrum disorder (FASD).
“The minute of reflection symbolizes the worldwide circle of community and all of us who care about FASD, who are working toward its prevention, and all of us who are trying to help children and adults with fetal alcohol disorders reach their full potential,” said Debra McKillop, who was diagnosed with FASD as a teenager.
Sept. 9 is FASD Awareness Day, a date chosen to represent the nine months a woman is pregnant, during which time prenatal alcohol exposure can cause a baby to be born with the disorder. FASD can present itself in many different ways, ranging from cognitive, memory, learning and behavioural challenges.
To honour the day, the Calgary Fetal Alcohol Network (CFAN) and partnering agencies had a breakfast and carnival in the park as a way to bring together family members, caregivers, and people living with FASD.
A Canadian study released earlier this year estimated that at least three per cent of Canadians have FASD, with researchers saying the number is likely higher.
“As a disability, FASD is unusual in the sense that there is an element of stigma and shame attached to it,” said Jamilah Edwards, executive director of CFAN.
“I think we have a lot of work to do around removing stigma and recognizing how many of us could potentially be affected by FASD because of how common alcohol consumption is.”
Edwards said some women struggle with addiction issues, and others drink before knowing they’re pregnant. She said FASD is considered an invisible disability because it’s a brain-based disorder — meaning it isn’t physically noticeable — and doesn’t get the attention it deserves.
“When someone is born with a disability we tend to make accommodations in the community around that, but with FASD I think we have a lot of work to do in recognizing that, as a community, we need to see it as a disability,” she said.
“And our response to it should be one of access, support and accommodation, so these individuals can thrive and be included.”
Tashena Shortneck is 23 years old and diagnosed with FASD. She loves pugs, watching sci-fi shows and painting. She describes herself as a good friend and someone who is able to make people feel wanted and loved.
But she struggles with many things society expects of adults, such as working full time and coping with her emotions.
“FASD is invisible, so I look really normal and I speak really well so people tend to expect way more from me than what I’m able to do,” she said.
Shortneck said she wishes she could “do everything that is wanted of me,” and often gets frustrated, but recognizes that she just needs more support than people who aren’t affected. She’s currently part of a support program that helps her with daily tasks such as cooking meals.
When asked what she wishes people understood about FASD, Shortneck quietly says, “a lot.” After taking a pause, she continues.
“I just wish people knew that we struggle, and I know that we don’t look like we do, but we really do. I just wish everyone knew we do want love and we are thankful for everyone who is there for us.”