To Holland Bloorview and beyond: Rachel’s story
As a teen, Rachel’s confidence soared as she learned how to advocate for herself. Now, she’s using those skills to tackle a fragmented adult health care system.
Rachel is a freelance writer and a fourth-year journalism student who understands the power of storytelling.
Her story with Holland Bloorview began when she was just a toddler attending Play and Learn nursery school. She later transitioned into the Bloorview School Authority’s Integrated Education and Therapy program, where she received services like physiotherapy alongside everyday schooling.
Some of Rachel’s favourite memories at Holland Bloorview include summers in the Daphne Cockwell Spiral Garden. Recently celebrating its 40th anniversary, Spiral Garden is an integrated summer camp where kids with and without disabilities explore through art and play. For Rachel, the best part about Spiral Garden was that it was a barrier-free environment where she could be boundless and endlessly creative.
“I can’t really think of a way that the camp counsellors adapted all the activities, because they were just accessible to begin with. It was just the reality of Spiral Garden,” she reflects.
Unfortunately, that kind of accessibility is not always the reality of the world outside Holland Bloorview. Rachel recently made the transition from pediatric to adult health care. She is experiencing firsthand how adult health care is oftentimes less accessible to people with disabilities, not at all like what she was used to at Holland Bloorview.
“I said to somebody a few days ago that the adult health care system is like a shopping mall, except the shopping mall has one store that's open at weird times and is five hours away from your house,” says Rachel.
Having a strong support system of family and friends helps Rachel ease the stress of coordinating care as an adult. But she is also open about the challenges of navigating a fragmented adult health care landscape.
“Now, I have to go to 5 different places for everything that I need. The fact that my care is not in a centralized place makes it difficult to arrange scheduling and keep track of everything,” she explains.
While Rachel is no longer a client of Holland Bloorview, she relies on the skills she learned at the hospital to help her make this transition into adulthood. Not only that, but she credits Holland Bloorview with boosting her confidence to combat inaccessibility, starting from a young age.
“When I was in kindergarten at the BSA, I remember my teacher, Paul, saying that we need to be creative and we need to be empowered,” says Rachel. “That’s really the lesson I’ve taken into the rest of my life, that I see my disability not as a hindrance to me, but as something that empowers me to keep going.”
Over her years at Holland Bloorview, Rachel learned how to better advocate for her needs, and to take control of her health care. She brings this confidence to everything she does, from interviewing people for articles she is writing, to moving away from home to attend university in Ottawa.
“A lot of my experiences in Ottawa have been because 18-year-old Rachel had the confidence to go for it. I've learned to trust my instincts and be confident in the abilities that I know I have, and to rely on my family, even as I spread my wings,” Rachel says.
Rachel hopes that by sharing her story, she can help other youth with disabilities feel the confidence they need to make the transition to adulthood, in whatever way that looks like for them.
“As disabled youth, a lot of times our parents are very much involved in our decision-making—and I'm not saying they shouldn't be—but it's your time to take the wheel and see what you're capable of. And if you haven't done that before, now is a great time to start.”
