Yukon woman speaks out about living with 'the invisible disability' — FASD

'Just because it looks like we’re doing really well, don’t pull [those supports] away, because that sets us up for failure,' says Jessica McMurphy.

Jessica McMurphy is part of a new awareness campaign being launched Sunday, FASD Awareness Day

Jessica McMurphy of Whitehorse lives with FASD and works at the Yukon Transportation Museum. She says people need to know more about 'the invisible disease.' (Sandi Coleman/CBC)

When Jessica McMurphy of Whitehorse was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) at the age of 20, she saw the diagnosis as a sort of gift.

"It was a gift because I got a lot of added support," she said.

McMurphy, now 32 years old, credits that support — from organizations like the Fetal Alcohol Spectrum Society of Yukon (FASSY) and the Yukon Association for Community Living — for helping her build independence and find meaningful work.

She just started a new job this summer at the Yukon Transportation Museum, an ideal place for a history buff like her. McMurphy said she and her husband — also diagnosed with FASD — have their own place and pay their own bills. 

"Anybody looking at us downtown would probably go, 'you don't look like you have a disability.' Which is why they call it the invisible disability," she said.

McMurphy said she's seen a growing awareness of FASD in recent years, but feels there's still a ways to go. That's why she's agreed to be featured in a new awareness campaign being launched this weekend in Yukon, by FASSY and the Association for Community Living. The launch is to coincide with FASD Awareness Day on Sunday.

McMurphy feels that people living with FASD don't always get the support they need — especially if they're seen as "high-functioning" individuals.

"A lot of people on social assistance who have disabilities and are on the disability side, after you make so much and you're doing so well, they go, 'oh good, you're doing so well, let's take that from you now,'" she said.

"Just because it looks like we're doing really well, don't pull [those supports] away, because that sets us up for failure."

10-year FASD action plan

The Yukon government is working on a 10-year Yukon FASD "action plan," and released the results of a year-long public consultation about what that plan might include last week.

The consultation saw government officials meet with Yukoners who live with FASD, their families, and service providers, in several communities. Those meetings happened between May 2017 and March 2018.

The results echo what McMurphy said — that too often, people with FASD do not receive the support they need, to reach their full potential. Sometimes, it's because FASD goes undiagnosed or unrecognized.

According to the government's "What We Heard" document summarizing the results of the consultations, stigma is also an issue. 

It says too many Yukoners do not understand what it means to live with FASD, despite its prevalence. In 2016, the Public Health Agency of Canada estimated that between two and five per cent of Canadians live with FASD. 

"Lack of awareness and understanding about FASD can lead to prejudice and discrimination toward people living with FASD. We heard that blaming and shaming is being felt in all communities," the report says.

It's not clear when the government's 10-year FASD action plan will come out, although the "What We Heard" document says the government hopes to launch it in the summer of 2018 — which ends next week.

With files from Sandi Coleman