Changing the language around FASD will help people live with their strengths and challenges

By Laura E. Young

SUDBURY – Victim. Villain. A lifelong sentence. These are words and negative perceptions that people working in the field of Fetal Alcohol Spectrum Disorder (FASD) are trying to dispel from the complex conversation around the brain-based, lifelong physical disability.

“Each individual has their own strengths and challenges and they need supports to succeed in many aspects of their lives,” said Lindsay Wolfson, researcher at the CanFASD Research Network, and a keynote speaker at the 10th annual Anishinabek G7 FASD Conference, from Feb. 26-28 in Sudbury, Ont.

The media can lead in the de-stigmatization efforts by using up-to-date terminology and the definition created by individuals with FASD and CanFASD researchers when discussing the condition that affects four per cent of the population, said Wolfson.

“In the child welfare system [it’s] three to 11 per cent. Any of the reporting we have on Indigenous populations isn’t set up in the context of colonization so that’s a huge misnomer to start with,” she said. “We really need to talk about [FASD] in the context of colonization, intergenerational trauma, the residential school system, as well as the Sixties millennial scoops.”

The next step would be to change the language that shows women who use substances during pregnancy are hurting their children, she said.

“Often there is villainizing or there is victimizing. The language of seeing individuals with FASD as a life-long sentence and women as the perpetrators is really harmful to women who may be dealing with substance-use concerns or who may not know,” explained Wolfson. “The studies were 30-40 years old and were often conducted in a small population so they can’t be generalized and used to describe an entire population,” she said. “Still, these older studies have increased the likelihood of Indigenous women being screened more often for alcohol use. They’re more likely to see child welfare involvement. Women who aren’t Indigenous don’t get screened for alcohol use the same way…So they may not be aware of substance use-related effects in pregnancy.”

Over 200 people attended the three-day conference that returned to Sudbury for the first time in several years.

To celebrate the decade milestone, conference organizers focused on a theme of FASD: Honouring our Roots.

For Carol Anne Cheechoo and Fran Pine, two of the organizers, it remains important to highlight the achievements of a conference they say is important and “so needed.”

“From what I’ve been told, because of this conference, the stigma is slowly going down,” said Pine. “There’s still a lot of work to do in that area but it’s easier for families to connect with one another.”

The conference focuses on building relationships between service providers and families.

For Cheechoo, more people are comfortable talking about FASD.

“More people are educating themselves. There’s so much stigma attached.”

In terms of achievements, Pine points to a side project that did not necessarily develop out of the conference itself but was still part of the conversation.

Pine was part of the team that brought the medical alert bracelet pilot program for first responders. People with FASD wear a medic alert bracelet specific to the condition, much in the way someone with diabetes would.

This program was developed six years ago. Pine was involved with Priscilla Southwind as they worked to create videos, trained first responders, and recruited people with FASD to the program.

“A lot of times they [can] run into conflict with the law. And they have different needs. The first responders are more aware of those different needs. The bracelet is one way for them to recognize that.”

Using Jordan’s Principle Funding, they have developed a respite program for caregivers. Jordan’s Principle, of the First Nations Child & Family Caring Society, works to ensure First Nations children have access to the care they need in a timely fashion with special regard to their unique situation as Indigenous members of society.

The families needed the respite, according to Pine.

“We want to keep families together. And that was one thing across the board the families were saying is we’re burning out. We need help.”

They also needed people who understand that working with people with FASD is all about strength and accommodations, she said.

Cheechoo says that a push was made to create more diagnostic capacity and a focus on education in the communities. They developed a post-secondary FASD certificate program which is offered through Sault College and in partnership with Contact North.

For more information, contact Brianna Nadjiwon, Shkagamik-Kwe Health Centre, 705-675-1596, ext. 213, bnadjiwon@skhc.ca or visit the Noojmowin Teg Health Centre website or the FASD clinic at NEO Kids website.

Additional Links:

https://canfasd.ca/  https://fncaringsociety.com/jordans-principle https://www.fasdinfotsaf.ca/en/live_events/10th-annual-anishinabek-g7-fasd-conference/