Mathias draws on his disability experience to empower others

By Louise Kinross

It wasn't until Mathias Castaldo was 22 that he met other people he identified with. That's when he joined Holland Bloorview's youth advisory as a volunteer.

"It was like oh, I'm not the only one," says Castaldo, who now works as a youth facilitator for our Employment Pathways program. "I had met other students with a learning disability, but I hadn't met anyone like me, who also had a physical disability."

Castaldo develops workshops for our Youth At Work program, which offers young adults volunteer work placements at the hospital, and Project Inclusion, which educates schools and employers on accessibility and inclusion. He also runs a workshop on how to plan for university or college when you have a disability. Castaldo has a master's in education in developmental psychology and human development.

"One joy of my work is when youth and families say they appreciate my lived experience," Castaldo says. "There's a sense that I may understand what they're going through because I have a disability. Studies show that youth like to have clinicians who have a disability and may be more willing to open up to them."

Castaldo was born with a heart condition. He suffered a stroke during surgery as a newborn, which led to his cerebral palsy diagnosis. 

While at SickKids Hospital recovering, his grandparents from Argentina arrived and his grandmother told a nurse: "We think he's going to bring us some good luck."

Castaldo was followed at Holland Bloorview as a child. He especially valued the disabled clinicians he worked with. "They made me feel more comfortable to come in," he says. "The advice they gave was relevant, from their own experience. For example, I remember [occupational therapist] Linda Fay taught me how to tie my shoes. My muscles are tighter on my right side and I don't have the same dexterity and control. She also has a physical disability, so I was able to observe and learn from her."

At school, Castaldo "needed some supports. I was lucky in that my parents were great advocates and helped me use different strategies to learn effectively. For example, when I was in primary school, my mom would create practice exams for me, and help me study. She gave me the structure and pressure that helped me succeed."

Castaldo often met with teacher assumptions that he couldn't keep up in the mainstream class, or that he wouldn't be able to do sports. "I just ignored them, or said 'Give me a chance.'"

In elementary school, he wasn't picked for any sports teams. But in high school, a friend encouraged him to come out for the running team. "At first I didn't know how to pace myself," he recalls. "The whistle would go off and I'd sprint and get tired. My coach trained me on how to pace myself to run longer distances. I also had other students pushing me along to get better. I had a really good support system in that track team."

Castaldo says being on the track team and taking drama class gave him the opportunity to meet students with similar interests and make friends. He also made efforts to be kind to others, he says, messaging them to see how they were doing, or making plans to get together.

Castaldo went to regular schools but had extra time to write exams. "In high school I would go to the resource room with other students for exams. I used to help some of the kids with their exams. One day I had to go to a track event and we had a test that I didn't write."

Later, he was surprised, and amused, when the teacher told him that his peers didn't write the exam either—because he wasn't there.

In his current role in Employment Pathways he aims to be creative. "When developing workshop content, you have to create activities that are accessible and fun, with content that the youth will understand. We're constantly making adjustments to improve things."

Good communication and writing skills and flexibility are important in his job, he says. "Also understanding that your lived experience is only relevant if it can benefit a client's goals."

Castaldo loves watching youth "do well beyond the programs. They may start off in our volunteer and Youth At Work programs, but then they progress into paid employment or post-secondary school."

He counts his team members "as some of the best clinicians in the world. I look up to them for a lot of things. They've really assisted me with different learning strategies and given me confidence with developing the workshops."

To manage stress, Castaldo spends time with friends, reads, listens to music, goes for a drive or runs. He also loves travelling and visited his cousins in Argentina last March. "You need to have outlets to deal with stress and take your mind off work," he says. 

If he could change one thing about how we support youth and families it would be to provide more financial support. Many families struggle with the extra costs that come with disability, "especially in this economy," he says.

Castaldo transitioned from Holland Bloorview to Toronto Rehab's Life Span Clinic when he became an adult. He'd like to see that kind of coordinated move with great communication between pediatric and adult teams for all clients.

He encourages parents to "start early with chores and volunteer opportunities for their kids. That will give them a great foundation when they're ready to move on as an adult."

Castaldo has applied to further study clinical psychology or social work. "I really like education and academics. I'd like to gain more knowledge and that professional designation would also open more doors. But I try to take each day as it comes. It's important to have expectations, but you have to take the way things come at you as well."

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