For Jacob, self-advocacy is about sharing his perspective. Having experienced discrimination in both his personal and professional life, he’s determined to raise awareness of brain-based developmental disabilities, both within and outside of health research.
Jacob Birchnall, NYAC member
Jacob joined the NYAC in 2023 but has been involved in CHILD-BRIGHT projects since 2020. He has reviewed several research proposals and spoken at network events, including the 2023 CHILD-BRIGHT Conference. Jacob was also a tester for the first version of the MyREADY Transition™ BBD App, a mobile app developed by CHILD-BRIGHT’s READYorNot™ Brain-Based Disabilities Project to help youth transition from the pediatric to adult health care systems.
Jacob’s insights are truly unique, as he’s living with four brain-based developmental disabilities: autism, epilepsy, dyslexia, and attention-deficit/hyperactivity disorder (ADHD). He also has low-frequency hearing loss.
Jacob only received his epilepsy diagnosis at age 10 and his autism, dyslexia, and ADHD diagnoses at 16. Growing up, he was very shy and reserved.
“I rarely connected with kids my own age,” he says. “I was bullied, and at the time, I didn’t understand why.” Joining the NYAC has not only amplified his voice, but also given him the opportunity to build relationships with others living with brain-based disabilities.
“It’s helped me a lot,” he says. “I have people I can talk to.”
Jacob, who is studying aircraft maintenance technology at the École nationale d'aérotechnique, has always excelled at building and repairing. When asked about his other pastimes, his answer is simple: “Helping people!” Throughout high school, he was a volunteer at every event. He also enjoyed being an assistant counsellor at the Epilepsy Foundation summer camp in 2022. Now, he’s an enthusiastic customer service rep at RONA, which has a disability program.
Jacob hopes to advocate for others with brain-based developmental disabilities who were diagnosed late, as teens or adults.
“I understand what that’s like," he says. “I didn’t get the support services I needed when I was young, so I had to—and still sometimes have to—figure out how to do things on my own.”