The Self-Advocate Leadership Network (photo: SALN BC)
By Spencer van Vloten
September 18th, 2021
The Self-Advocate Leadership Network (SALN) has been at the forefront of advocacy for British Columbians with intellectual disabilities, bringing together leaders from across the province to to make a difference in a time of crisis.
This is the story of a group that began as a vision shared by 2 friends, and bloomed into a powerful force for change.
Alex Magnussen and Michael McLellan started having the conversation in 2017. Frustrated by the lack of coordination among self-advocacy groups across the province, they shared a vision of creating a unified network of leaders who would combine their skills, experience, and passion to do better advocacy for British Columbians with intellectual disabilities. After exchanging ideas and talking them through for a while, Alex and Michael started working with a team of advisors to turn the dream into the reality. They searched throughout the province and began recruiting a mix of BC’s top leaders in the self-advocacy movement, each of whom would bring their own skills and experiences to the group.There were highly experienced self-advocacy veterans like Dave and Lorie Sheritt of Burnaby, and Richmond’s Jo-Anne Gauthier, each of whom had spent decades advocating for the community inclusion and empowerment of persons with intellectual disabilities. There was Bryce Schaufelberger, a computer whiz from Mission who founded the world’s biggest website for self-advocates, SelfAdvocateNet,
While Nanaimo’s Kara Anderson brought her sharp eye for detail.
And there was representation from a diverse mix of self-advocacy groups, some with a provincial focus, like BC People First, others with more of a local focus, like Self-Advocates of Semiahmoo. In 2019, with the team assembled and supported by allies in the community living movement, Michael and Alex launched the Self-Advocate Leadership Network. The dream was now a reality and the group was eager to get started, but developments around the the world would force them into action faster than they’d ever expected.
NO MORE DYING ALONE
Almost as soon as SALN held their first meeting and created their mission and vision statements, the pandemic hit, creating an urgent need for advocates to step up. Instead of finding themselves overwhelmed like many other organizations, SALN took off running and hit their stride just as things were becoming most difficult in BC. They met twice a week, every Tuesday and Thursday, working to do all they could to support their communities and other self-advocates. An important part of this was creating a website with news sheets that provided essential information about how to stay safe and find supports during the pandemic. SALN also held online events to help keep British Columbians with disabilities connected during lockdown. But the death of Ariis Knight would lead SALN to make their biggest impact.
Ariis Knight died alone at Peace Arch Hospital. SALN was determined not to let such a tragedy happen again (photo: Peace Arch News)
Disturbed by the story of Knight, a woman with intellectual disabilities who’d been left to die on her own in a White Rock hospital, SALN began their push to change the province’s essential visitor policy. They partnered with organizations throughout BC, lobbying government and raising awareness among the public. They spoke out and explained the importance of supportive decision making, highlighting the communication barriers that persons with intellectual disabilities face when left unsupported in the medical system. And their effort paid off: the provincial government revised the essential visitor policy, allowing persons with intellectual disabilities to be visited by loved ones and supporters while in hospital or care homes. It was a big victory for SALN, but their work was just starting.
A SERIOUS TIME – BUT STILL A FUN ONE
With the pandemic grinding on, SALN has continued to make it a focus of their advocacy, but their impact is being felt in other ways too. They ran a campaign to end use of the “R” word – retard- after it was used by a public representative in Chilliwack, and they’ve created a shift in how Community Living BC refers to the people they serve: ‘clients’ was the previously used term, but that isn’t so popular among self-advocates.
They also recently held a province-wide picnic and water balloon fight with community living groups in Terrace, Penticton, Burnaby, Surrey, and Mission, bringing people together and raising awareness about inclusion. In true SALN style, they were hard at work the very next day, developing their new strategic plan. While much of SALN’s success lies in the diverse skillset of its members and supporters, as well as the mentoring and teaching they provide to each other, Michael says there’s another key to their rapid rise. “We’re always having fun. Our meetings are silly, wacky, smart-alecky, and we make sure to have happy hours together too.” “It’s serious and we’re there to get work done, but we want to have a good time while we do it.”
And for Michael, whose vision back in 2017 has grown rapidly before his eyes, it’s changed his own life. “It’s made a big impact on me. I’ve gotten to know some really cool people and now have mentors of my own. I’ve never had that before and it’s helped me grow so much.”