Breaking Stigma and Building Connections: Reflections on International FASD Day
By Susan Kim, Kinsight Key Worker
On a grey September morning, as a cool breeze cast a somber backdrop, Mary and I set up our booth for an event marking International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day, September 9th, at Hyack Square in New Westminster. While the day’s goal was to ‘raise awareness,’ I had a feeling that I would be the one learning the most. This annual street campaign has always offered us a chance to listen to community members, connect with them, and learn from their stories.
Mary, from the Spirit of the Children Society, has been an FASD Community Resource Worker for many years, running biweekly Parents/Caregiver Support Groups and setting up information tables around this time each year. I joined her seven years ago when I began my role as a Key Worker with Kinsight. Our successful collaboration between our two organizations stretches back many years.
Mary placed adorable little red baby shoes on our table, and I wore red sneakers for the day. The Red Shoes Rock campaign symbolizes an ongoing effort to bring visibility to the often-invisible struggles of FASD and to foster dialogue about this misunderstood condition. Originating in the U.S., this movement underscores the importance of keeping the conversation about FASD active and necessary.
As we completed setting up the table, it was time to wait for visitors.
A Young Man’s Quiet Encounter
A young man with a cool demeanor approached our table, quietly reading the information sheets we had prepared. His silence made me unsure of what he was seeking, so I showed him a pamphlet. He then revealed that he himself had FASD.
It was encouraging that he started to open up. Mary and I explained that we were there to discuss FASD because it is an invisible disability, often leading to misunderstandings and insufficient support. There is significant stigma and prejudice associated with FASD, particularly towards biological mothers, despite the widespread consumption of alcohol among adults. Factors such as a lack of information, inadequate support systems, and addiction issues contribute to the stigma. We stressed that to move forward, we must discuss these issues openly.
He listened attentively and with patience. At the end of our conversation, he smiled warmly, took some information sheets, and quietly thanked us before leaving. Although he spoke little, his gesture and smile were a powerful sign that our message about the importance of open dialogue on FASD had reached him. This encounter was deeply memorable and meaningful for us.
Reconnecting with a Former Advocate
I was pleasantly surprised when a former active member of a parent-to-parent group greeted me. She visited our table with her son who happened to be wearing red shoes that day! This delightful encounter brought back fond memories of our collaboration on raising awareness about invisible disabilities and engaging children in meaningful ways. Her dedication to advocacy has always been evident.
She shared that she continues her efforts by connecting with other parents from our parents’ group. She took some materials from our table to distribute among her network of parents. This conversation reinforced the importance of networking among parents and caregivers raising children with FASD to connect, share stories, and advocate together.
At one point, she mentioned, “now we are just needing a job,” which struck me deeply. It raised an important question about whether dedicated, knowledgeable parents with lived experience raising children with FASD have opportunities to utilize their valuable skills. This insight highlights an area that needs more attention in the future.
The Morning’s Continuation
As the morning progressed, a man shared his family’s 22-year experience with undiagnosed FASD. He recounted the lack of support from government and educational systems, which led to significant challenges and a recent family breakdown. Unfortunately, this kind of story is still a part of our current reality. His story underscored the urgent need for more awareness about FASD, and improved support systems.
Some motorists honked and waved, offering unexpected community support, while a woman who turned away upon hearing the word “alcohol” highlighted the persistent stigma surrounding FASD. Her reaction reminded us of the barriers that still exist in addressing this topic openly. To resolve these issues and improve conditions, we must continue the conversation.
Ongoing Efforts
For me, these stories from the day reflect the diverse experiences within our community and emphasize the ongoing need for greater understanding and support for those affected by FASD. Sharing these genuine narratives aims to foster more open discussions about FASD and its challenges. While progress has been made, much work remains to be done, requiring the support and understanding of many to continue breaking down stigma and ensuring those affected by FASD receive the recognition and support they deserve.
In honor of FASD Awareness Day and to further the conversation, the Kinsight Key Worker program also presented at the Port Moody Farmers Market and the Port Coquitlam Farmers Market on the week of September 9th. As we reflect on these stories and the events of the past week, let us keep working together to enhance our understanding on FASD, knowing that every small step contributes to a more compassionate and informed community.