Lived & Living Experience Leaders: Meet Tommy Akinnawonu

Tommy is a first-year Biomedical Sciences student at Toronto Metropolitan University. At 19, he’s the youngest member of the NYAC!

Tommy Akinnawonu, NYAC member

Despite being relatively new to the council, he has already participated in several NYAC group consultations for research projects external to CHILD-BRIGHT, including one that explored virtual reality therapies for children with attention-deficit/hyperactivity disorder (ADHD).

He was also a youth research partner with One Child Every Child, a research initiative with a vision for all children to be healthy, empowered, and thriving.

Tommy, who is Black and queer, lives with ADHD and autism. “My lived experience with brain-based disabilities is very different due to my Blackness,” says Tommy. “It's also difficult with the added layer of my queerness.” 

His younger brother, for whom he helps care for, is also on the autism spectrum. Tommy has seen how people react to him and his brother when they’re out in public together, especially if they’re talking or stimming. (‘Stims’ are self-stimulatory behaviours that involve repetitive movements or sounds, like humming or rocking back and forth). “I’ve noticed a much crueller response to us,” says Tommy. “Especially towards my brother.” 

One symptom of Tommy’s autism is alexithymia, or difficulty experiencing, identifying, and expressing emotions. He explains how masking, or suppressing his natural autistic traits, fuelled his alexithymia: “I didn't know what I wanted or didn't want, when I was being appreciated or disrespected.”  

Because of these experiences, Tommy feels strongly about being open about his identity. “To me, self-advocacy is about demasking,” he says. “Being unapologetically myself allows other marginalized people to identify me as a safe person, which means I can help advocate on their behalf.” Outside of his studies and research, he’s passionate about disability justice and crisis intervention, and does harm reduction outreach in Toronto. 

An enthusiastic student, Tommy is hoping to minor in Disability Studies. His favourite course this semester is on tangible human-computer interactions. He’s currently prototyping a tool to help people with genetic medical complexities and disabilities better understand their conditions. 

Lived & Living Experience Leaders: Meet Claire Dawe-McCord

Claire, a final-year medical student and longtime NYAC member, is a passionate advocate of patient-oriented research (POR), which seeks to meaningfully engage partners with lived and living experience (PWLEs) at every stage of research.

Claire Dawe-McCord, NYAC member

“I think of it like a business model,” she says. “You wouldn't create a product without consulting with consumers. We’ve been making these research products that didn't involve the end users.” 

Claire joined the NYAC in 2019 while pursuing a Bachelor of Health Sciences at McMaster University.

“I reached out to Jan Willem Gorter [Co-Principal Investigator of CHILD-BRIGHT's READYorNot™ Brain-Based Disabilities Project], because I really wanted to work with him,” she says. Jan encouraged her to become a youth research partner with READYorNot™. From there, she was recommended for the NYAC. 

Since then, Claire has been an active youth research partner on the READYorNOT™ project. She was also a speaker at the 2023 CHILD-BRIGHT Conference and helped shape a study about youth mental health during COVID-19. She even ran her undergraduate thesis project, which explored transitions between pediatric and adult health care, through the network. 

Being a youth research partner has cemented her belief that people with lived and living experience should be involved in research from the ground up. “It’s the future of health care,” she says. “Plus, it’s beneficial to individuals living with a disability to see good come out of their own experiences.” 

Claire is living with a very rare neuromuscular disorder that affects her brain and muscle functioning. But like many of her NYAC peers, it took years for her to receive a diagnosis. "My symptoms were dismissed,” she says. “I was told that I was just anxious.” When she was 15, she went into multi-organ failure. Finally, doctors began to take her symptoms seriously and provide her with the care she needed. Claire also lives with attention-deficit/hyperactivity disorder and dyscalculia. 

When asked how her brain-based disabilities have affected her life, Claire is pensive. “I think I’m a very resilient and adaptable person. Outside of acute flares, I don’t think about my disabilities.” Despite her symptoms, she’s incredibly active. She’s an avid skier and has been looking into adaptive rock climbing. “And I’m a really good cook,” she says with a smile. “I cook a lot for friends!” 

Lived & Living Experience Leaders: Meet Shafniya Kanagaratnam

Shafniya, a recent college graduate, joined the NYAC in 2021 after seeing a recruitment ad. She was looking for a way to get involved in brain-based developmental disability (BDD) research as a youth volunteer, and the term ‘patient-oriented research’ (POR) was brand-new to her.

“When I first joined at 24, it was for self-advocacy reasons,” says Shafniya.

Two years earlier, during her undergraduate degree, she’d been diagnosed with attention-deficit/hyperactivity disorder (ADHD). The NYAC gave her the opportunity to better understand her condition and share her experiences in a meaningful way. 

Since joining the council, Shafniya has completed peer reviews for CHILD-BRIGHT Phase 2 projects, advised key groups on how to provide accommodations for youth during the research process, and been a consultant on the importance of equity, diversity, and inclusion in POR. She’s currently a youth research partner on the CHILD-BRIGHT project CEE YOU!: Critical Ethical Engagement of YOUth in patient-oriented research, supported by our Training Innovation Fund and led by Sakiko Yamaguchi. 

Through her involvement in health research, Shafniya has seen the value of her lived experience first-hand. “On the CEE YOU! project, I interviewed the youth participants,” she says. “Since I also have a brain-based disability, I found it easy to develop a relationship with them.” 

Shafniya has also noticed that more research is needed on BDD in adults. “From what I’ve seen, ADHD research participants are generally 18 and under,” she says. “But neurodevelopmental disability goes beyond childhood.” In the past few years, she’s met many other children of immigrants who were diagnosed with ADHD in adulthood: “It’s easy to fall through the cracks." 

She points out that navigating ADHD as an adult is a unique experience, because you’re accountable for yourself. “I had to drop out of school for a while,” she recalls. “I couldn’t work. I couldn’t afford my medication.” 

In the future, Shafniya hopes to see more studies looking at BDD that consider the various forms of inequality that a person may experience. “For example, gender affects how you’re screened for ADHD,” she says. “I think it’s important to look at brain and mental health using an intersectional lens.” 

Lived & Living Experience Leaders: Meet Jacob Birchnall

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.” 

Lived & Living Experience Leaders: Meet Hans Dupuis

Hans Dupuis has been a member of the NYAC since its inception in 2016. A longtime Air Canada employee, he was introduced to CHILD-BRIGHT by a friend who was running an autism support program in Montreal.

Hans Dupuis, Co-Chair of the NYAC

“One thing led to another," he says. “I heard about the youth council and ended up getting recruited.”

Hans was diagnosed with autism and a mild attention deficit at age 6, but only learned that he was on the spectrum at age 13: “I’d been taking medication for years but didn’t know why.”

When he heard about the NYAC, he was keen to get involved in brain-based developmental disability research and share his perspective.

Hans has been the NYAC Co-Chair with Logan Wong since 2022. As the only French Quebecer, he brings a unique and valued perspective to the council. Since 2016, he has participated in various NYAC group consultations, been a guest lecturer on youth engagement in research at McMaster University, and become an active member of CHILD-BRIGHT's Knowledge Mobilization Committee. Most recently, Hans helped review the network’s new terminology for our much-anticipated language refresh. 
 
When asked if he’s experienced any discrimination due to his autism, Hans says he’s been lucky overall. “I was never bullied,” he says, though he recalls how kids would sometimes avoid or exclude him in school. “I’ve mostly experienced prejudice when dating.” He points out that while social interactions are much easier than they used to be, he still struggles:

“Even though I’ve spent a lot of time studying neurotypical social interactions, it can be hard. I don't always understand ironic jokes or innuendos. It’s a daily challenge.” 
 
Outside of the NYAC, Hans is a member of the International Children’s Advisory Network (iCAN) Young Persons Advisory Group. He is also a former workshop mentor for Action main d’oeuvre, an organization that aims to help people with autism prepare for the workforce. “It was Action main d’oeuvre that helped me get hired at Air Canada in 2017,” says Hans. “So, I was happy to give back.”