Becoming an advocate: Dennisse’s story

One day in college, Dennisse was surprised to hear her professor of medical administration mention spina bifida. Even more surprising was how little information was shared. Knowing her peers were missing important context, Dennisse asked to address the class. She shared her experience of spina bifida, and how, like many people with the disability, she has a shunt which drains excess fluid from her brain and walks with the support of a leg brace. 

“Afterward, everyone was so proud of me,” says Dennisse. “Saying, ‘we wouldn't have known what spina bifida was if it wasn't for you.’” 

Dennisse, who first came to Holland Bloorview as a baby, credits staff at the hospital with giving her the confidence to share her story. 

When she thinks of her time as a Holland Bloorview client, Dennisse remembers playing in the playroom, relaxing in the Snoezelen room and visiting the spina bifida clinic. Dennisse attended the clinic every other Friday throughout her childhood. There, she learned helpful tips about how to manage her care, including keeping her feet elevated when she had an injury to her foot. 

But her favourite part of coming to Holland Bloorview was going to orthotics appointments and catching up with Faith, who worked the front desk. 

“She was the most amazing, motivational person, telling me to keep fighting,” recalls Dennisse. “She would say, ‘Just don’t give up.’” 

Faith’s encouragement became even more important when Dennisse transitioned into the adult health care system. Often, when she encountered new care providers in the adult world, Dennisse had to advocate to receive the care she needed. 

“For those first 18 years everybody knew you, and then all the sudden you're meeting new people, having to repeat what's going on, having to find the right specialist and repeating your story once again,” explains Dennisse. 

Just as Dennisse was figuring out how to navigate adult health care, she injured her knee, leaving her unable to walk. On visiting the emergency room, she was shocked when a care provider asked her what spina bifida was. 

“You become an adult and there's little resources, so you just start learning for yourself,” says Dennisse. “That's when the word advocacy became very powerful, in terms of advocating for yourself and trying to figure out what's good for you and what's not.” 

Recovering from her injury, Dennisse returned to Holland Bloorview, where orthotist John developed a new leg brace that could help Dennisse’s mobility. Over time, Dennisse regained her ability to walk and even caught her second first steps on camera. 

“Sometimes like when I look at the video, I feel like little me is walking for the first time,” she says. 

Now, when Dennisse encounters a challenge, she thinks back to everything that “little her” has accomplished. One of those accomplishments is becoming more vocal about her needs.

“When I feel like my body is too exhausted, I use my wheelchair. And sometimes I feel I could be walking, but I shouldn't be ashamed of using something that makes me feel safe. I know when I have to advocate for myself and say, ‘Hey, can I use the chair?’” 

As well as being a strong self-advocate, Dennisse is passionate about advocating for others. Her dream is that every health care provider in every hospital knows about spina bifida and other disabilities, making it easier for people to get the care they need, when they need it.