For 29-year-old Mathias, self-advocacy is about making his voice heard. He was born with cerebral palsy, a neurological condition that affects his movement and posture.
Mathias Castaldo, NYAC member
A strong supporter of patient-oriented research (POR), Mathias believes in utilizing his lived experience to create meaningful change in the health field. “I’d like to see more youth with disabilities taking the lead on research projects,” he says.
Mathias holds a BA in Psychology from Toronto Metropolitan University and an MEd in Developmental Psychology and Education from the University of Toronto.
He works at Holland Bloorview Kids Rehabilitation Hospital as a Family Support Specialist and a Youth Facilitator, where he is a resource person for youth with disabilities and their families and supports them through the transition to adulthood: “I like being able to share my lived experience to help others!”
Mathias joined the NYAC in 2018 as its inaugural chairperson and was an integral part in its formation and development. Since then, Mathias has played important roles on several research teams and offered key feedback on projects through the NYAC consultation service.
Presently, he’s a youth research partner on the 2022 Training Innovation Fund-winning project CEE YOU!: Critical Ethical Engagement of YOUth in Patient-Oriented Research. The team’s goals are to gain a better understanding of youth participation in POR and enhance researchers’ ethical engagement of youth with disabilities. Mathias’ involvement in the project is multifaceted. “I’ve had the opportunity to create the research poster, conduct interviews with participants, complete data analysis, and write lay summary reviews,” he says.
Like many of his fellow NYAC members, Mathias feels that one of his biggest challenges is contending with society’s prejudice toward different abilities. Stigma and ableism have impacted his motivation to play sports, pursue post-secondary education, and even find employment, he says: “I get self-conscious... I’ve become less inclined to disclose my disability out of fear of others’ reactions.” Despite these obstacles, Mathias has competed in athletics and excelled in school. “I don’t allow my cerebral palsy to define who I am,” he says proudly.