In 2017, Brenda founded BC Complex Kids Society, a grassroots organization that advocates for better support for children with medical complexity, including medical equipment, at-home nursing and respite supports. Brenda has also partnered on several research projects to bring the perspective of families to provincial and national policy discussions.
It’s a recent venture for Brenda, who previously had a career working in back-country ski lodges. “This is all brand-new,” she says.
Brenda’s son was born with a rare genetic condition that affects his neurodevelopment. “Everything about my world has been disability-related since I had my son,” she says.
Brenda wants to ensure that national disability policy considers the needs of people like her son and parents like herself who often face unique barriers to working because they are caring for their children. While meaningful employment for people with disabilities is important, not every person with a disability will experience it. Discussions about disability need to include these
perspectives, she says.
“Our kids are complex,” she explains. “They’re kids that are never going to be independent.”
Remaining hopeful can be difficult when planning for the future for children with complex needs, says Brenda. “We worry a lot about the future for our kids. There’s a lot to worry about when we’re gone,” she says. “This has created some stress just thinking about what the future looks like.”
The prospect of a national benefit lessens that fear.
“I’m optimistic that my son will live in a future that’s equitable and inclusive,” she says. “I feel like being a part of this is the road to get there.”
Brenda and her son live in Tahsis, B.C., a village on the west coast of Vancouver Island. Brenda is passionate about ensuring people with disabilities have opportunities to access nature and is the owner of Spark Adaptive, a small business that sells adaptive cycles and all-terrain wheelchairs.