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.” 

Announcing CHILD-BRIGHT’s new Director of Engagement

The CHILD-BRIGHT Network is thrilled to introduce our new Director of Engagement, Jenny Gilbert! 

Our Engagement Program focuses on authentic involvement of research partners with lived and living experience (PWLEs) in all facets of CHILD-BRIGHT's work. As Director of Engagement, Jenny will lead the program, working closely with the Engagement Program and Projects Manager and the Youth and Engagement Initiative Coordinator to strengthen engagement across the entire portfolio of network activities (implementation science research; training and capacity building; knowledge mobilization; equity, diversity, inclusion, decolonization and Indigenization; and communications).  

Jenny brings two decades of experience working in engagement, research, and knowledge mobilization in the public and nonprofit sectors to the role, including for the Ontario Midwives Association, Ontario Health/Health Quality Ontario, and the Ontario College of Family Physicians. She has also collaborated extensively with pan-Canadian networks in engagement. As such, a strong focus of Jenny’s career has been elevating the voices of people with lived experience to address inequities. In her early career, Jenny worked with children and families experiencing the impacts of colonialism, racism, and poverty in a Head Start Program on a reserve on the West Coast, and later, in Toronto with teen moms experiencing homelessness. For the past eight years, she has been a member of the Toronto Birth Centre's Quality Advisory Committee, representing lived experience and community perspectives. 

“Illustrating the story—the lived experiences—behind data is a strong passion of mine,” Jenny shares. “Listening, empathy, and curiosity—these are at the core of who I am and what I do. I approach my work from a place of humility, trust, and respect using a reflexive, intersectional lens—to get to the heart of insights and achieve outcomes that are aligned with individual, community, or organizational goals, needs, and values. I’m enthusiastic about joining CHILD-BRIGHT in this work to integrate diverse perspectives, experiences, and evidence into meaningful, action-oriented solutions for improved health outcomes for kids with brain-based disabilities.” 

“Listening, empathy, and curiosity—these are at the core of who I am and what I do.”

— Jenny Gilbert

Jenny is a parent of kids with brain-based developmental disabilities and is also the oldest of 16 kids: 12 of her siblings were adopted through the foster care system, have disabilities such as autism, fetal alcohol spectrum disorder, and learning disabilities, and experienced significant early childhood trauma. The varied experiences of her children and her siblings illustrate to her the importance of integrating perspectives of people with lived experience into research to support our understanding of the broader forces and systems that represent barriers or enablers to health, well-being, and full participation in our communities. They also illustrate how advocacy and policy change can lead to more relevant, impactful health policy, program, and service design and improve outcomes for kids and families. 

Working in the engagement sector, as well as parenting a child with autism and a rare autoimmune disease and two with attention-deficit/hyperactivity disorder, has afforded her a deep understanding of how asking parents, caregivers, and people with lived experience of brain-based developmental disabilities to contribute to research and volunteer their time can sometimes be more than they are willing or able to take on. In her view, it is essential to create engagement opportunities that consider the needs of the community and offer multiple entry–points and variable time commitments, and feel meaningful, reciprocal, and impactful to all involved. 

“So often in our work we are asked to separate our personal lives from our professional ones, so what excites me most about joining CHILD-BRIGHT is being able to bring together my experience as a parent of children with brain-based developmental disabilities with my decade-plus career in the health system facilitating engagement with people with lived experiences and building organizational capacity for inclusive engagement,” says Jenny. 

Welcome, Jenny!   

*** 

CHILD-BRIGHT wishes to thank outgoing Director of Engagement Sharon McCarry, who led the Engagement Program from 2021 to 2024. A passionate advocate for children and families with lived and living experience of autism spectrum disorder, Sharon championed our PWLEs throughout her tenure and increased the diversity of PWLEs who are involved in our network’s activities.  

We are also grateful for the support of CHILD-BRIGHT’s Parent Liaison and interim Director of Engagement Carrie Costello. Carrie offered essential guidance at a critical time for the Engagement Program, leading the Engagement Council with compassion and creating space for our members to authentically participate. 

The 2024 Training Innovation Fund: Call for applications

Now accepting applications!

 The CHILD-BRIGHT Network is proud to launch its 2024 Training Innovation Fund (TIF)! 
 
The 2024 TIF competition will provide a maximum of $10,000 to up to four creative and innovative training initiatives that complement patient-oriented research (POR) activities in implementation science and knowledge mobilization. These initiatives must support POR related to childhood brain-based developmental disabilities and actively integrate the principles of equity, diversity, inclusion, decolonization, and Indigenization

Click below to visit the competition page and review the full details, eligibility requirements, and application procedure.

Apply by August 31, 2024. Good luck!

Meet our previous winners:

• 2022 Training Innovation Fund

• 2018 Training Innovation Fund