Thinking about FASD in a new way was the key concept behind a recent national Fetal Alcohol Syndrome Disorder (FASD) symposium held at the Human Rights Museum.
The two-day Canada Northwest FASD Partnership Symposium, held Feb. 6-7, was called “Changing the Conversation” and the goal was to advance the conversation about FASD by promoting dignity, creating clearer language about persons with FASD and the culture of alcohol use in Canada, before, during and after pregnancy.
Over the course of the conference, attendees were encouraged to come up with numerous ideas to help inspire Canadians to focus more on the strengths of those with FASD, and to help include FASD in the broader national conversations about disabilities.
“We will be creating, developing and building ideas around increasing dignity, understanding and respect for all those impacted by FASD,” said Holly Gammon, manager, FASD initiatives for Healthy Child Manitoba, which was one of the conference organizers. In her opening remarks, Gammon said everyone in attendance was encouraged to participate. “Your ideas and insights are important.” About 100 people attended the conference, representing every province and territory.
Attendees included parents of children with FASD, elders, caregivers, Child and Family Services, people with FASD, health care service providers, policy makers, researchers and education specialists.
“It’s wonderful to have such diversity to help us move forward,” said Gammon.
Part of the challenge of the exercise, said Gammon, was to identify and understand what may be stigmatizing, and what “we may never have considered as stigmatizing before. We need to gently hold each other accountable if we want to create change.”
After an opening prayer by Elder Dave Courchene, and greetings from the province from Sarah Guillemard, MLA for Fort Richmond, a keynote address on “re-framing FASD” to help change public thinking was presented by Nat Kendall-Taylor, CEO of the FrameWorks Institute.
The FrameWorks approach
The FrameWorks Institute is a non-profit think tank that helps organizations change the conversation on social issues via research and studies to help further public understanding of an issue.
Kendall-Taylor explained that “changing the way we present information changes the way people perceive this information, and [the way they] act as a result.”
Kendall-Taylor said those at the symposium had a mission to increase respect and understanding for those who use alcohol during pregnancy and persons with FASD, and to help those who work in the field “be more effective in getting your message across.”
Framing messaging properly matters, Kendall-Taylor said, because it makes the difference between whether what you are communicating will come across or will “go in one ear, out the other” or worse, send people in the opposite direction.
He showed an example of how a nudge or slight wording change in a question can change people’s opinion on a topic. In a videotaped interview, a man was asked why some people become addicted to substances. His first answer said that people make their own choices to use addictive substances—it’s up to the individual. When he was asked the question again in a slightly different way, with the question indicating some people have life circumstances which could lead them to addiction, he changed his position and talked about how some may be more susceptible to addiction or may be influenced by life difficulties or surroundings.
“It’s his idea. It’s in there. It just needs to be cued…He has multiple ideas he uses to think about something as complicated as addiction. What the frame has done is cue the brain to talk about susceptibility,” said Kendall-Taylor.
“It moves the message from individual responsibility to one that is collective.”
Kendall-Taylor also brought up the importance of culture in creating messaging about FASD. Culture is a big part of the way people “make decisions about a wide range of social issues.” He noted that by culture, he was referring to shared patterns of reasoning, or ways of understanding the world.
And, culture shapes perception. So when messaging focuses on preventing FASD as the sole responsibility of a women, who is seen as a gatekeeper for her unborn child, the issue becomes that of “an isolated woman making an isolated decision.”
Instead, messaging should focus on a whole community of support, he said.
Another common misconception in public understanding about FASD is that “once [brain] development has been derailed, it is damaged for good.” Kendall-Taylor encouraged those attending the symposium to look for ways to talk about the plasticity of the brain, and of the strengths and abilities of those with FASD.
He added that instead of looking at punishment or shame to prevent FASD, advocates should move toward behaviour focused on prevention and guidance. Some possibilities could include: providing women with more support surrounding drinking during pregnancy, addressing trauma and helping them to make better choices.
Kendall-Taylor also noted when people create messaging, they should do so by offering solutions. Most communications on social issues focus 90 per cent on the problem and only 10 per cent on the solution.
“If this is what you are doing you will create disengagement and boredom.”
And, he urged people to always tell stories to communicate ideas about FASD, because ultimately, human stories are what help to interest and engage the audience. “If you are not telling stories as a way to communicate, you are missing out on the single most powerful way to communicate.”
Groups work on re-framing
After being inspired by Kendall-Taylor, groups spent the majority of the conference coming up with ideas that challenged people to focus on the strengths of those with FASD.
Groups chose to tell the story via social media, visual arts, and public awareness campaigns, among others. Presentations included a national education website to teach a new generation a different way of looking at FASD, the creation of a feature-length film about FASD, a grassroots social media campaign, and new FASD logo or symbol indicating support for those with FASD.
People said they came away from the conference with a greater sense of a way forward.
Next steps, said Gammon, would include a final report on the conference and using some of the ideas to start creating viable communications campaigns.
A positive experience
Those who attended said they enjoyed being able to connect with others from different jurisdictions.
“I always like these events to be able to network, and idea share. It’s nice to have conversations that are hard, but in a safe space,” said Shana Mohr, the training co-ordinator for the FASD Network of Saskatchewan. Mohr, who is also raising a child who has FASD, said it is also extremely positive to connect with other parents at an event like this.
“It’s neat to hear what’s working, what’s not. And it’s nice to hear what is happening in other provinces.”
Darlene Winters noted that as an FASD co-ordinator from Labrador, she finds it difficult to connect with others on the topic because “our communities are so isolated. It’s nice to come here for a conference and meet people from across Canada who have had different experiences. We are all here for the same reason.”
Audrey McFarlane, one of the conference organizers from Alberta, appreciated the ability not only to come together with others and network but also to start to address the stigma about FASD. “It starts with us. We have to challenge our own beliefs.”
She also enjoyed the diversity of the audience because it enriched the conversation.
Michele Caouette, also from Alberta, said as a mother of a child with FASD, it’s important to begin bringing families and individuals with FASD into the conversation.
“They are the grassroots experts.”