Lived & Living Experience Leaders: Meet Kelsey Seguin

Kelsey is a PhD student in Rehabilitation Sciences at the University of Ottawa. A member of the NYAC since March 2023, she’s been an active and enthusiastic addition to the team.

Kelsey Seguin, NYAC member

“Self-advocacy in health research is a topic that’s close to my heart,” says Kelsey. “It’s essential when you’re living with a brain-based disability.” Kelsey wants her voice to be heard, and she knows her perspective is valuable.

“When it comes to health research, marginalized groups need to be included in the conversation.”‍

Since joining the NYAC, Kelsey has reviewed research proposals for CHILD-BRIGHT's projects and co-created our most recent KM Family Hub webinar, “Pathways through Partnership: Knowledge Mobilization with Families of Children with Disabilities.”

Kelsey lives with spastic hemiplegia, a type of spastic cerebral palsy (CP) that affects movement on one side of the body. “In my case, it was caused by a lack of oxygen in the brain at birth,” she says. Kelsey was born prematurely at just 25 weeks and was quickly diagnosed with CP. “But here I am,” she says with a laugh. Her symptoms include chronic muscle pain and spasticity (stiff or rigid muscles). The condition also affects her fine motor skills. “I love building LEGOs,” says Kelsey, “but I need to take frequent breaks. The pieces are so small!” 

When asked how her condition has affected her life, Kelsey is thoughtful. “Most of the time, I don’t think about it,” she says. “This is just my normal.” She points out that the larger issue is how society views people with disabilities. “I get funny looks when I walk because I have a limp,” she says. As part of her doctoral work, she’s looking at the experiences of parents raising children with CP, encountering many “false assumptions” in the process: “People will ask, ‘How can you be a researcher if you have a disability?’”  

Research partners with lived experience sometimes come up against these preconceptions, too. “Some people think involving people with disabilities in research is too risky,” says Kelsey. “We’re seen as vulnerable.” Along with her fellow NYAC members, Kelsey hopes to challenge these biases and inspire others to make their voices heard.  

Lived & Living Experience Leaders: Meet Sierra Lynne Vanderdeen

Sierra has been a member of the NYAC since September 2022. He believes that, when it comes to health research, listening to the testimonies of those with lived and living experience is essential.

Sierra Lynne Vanderdeen, NYAC member

“For me, self-advocacy is about sharing my perspective,” he says. “I try to explain my situation in a way that can be understood and applied by researchers.” 

Sierra, like several other NYAC members, has autism. Receiving the proper diagnosis for his disability was a challenge, he says: “I was obviously neurodivergent, but it was a matter of finding the box that I fit into.”

Thanks to his parents’ persistence, he was finally diagnosed at age 15. After moving to Montreal for a new job, he began to meet other people his age who also had autism. One of his new friends was none other than the son of Sharon McCarry, former Director of the Engagement Program at CHILD-BRIGHT. “I call Sharon my Montreal mom,” laughs Sierra. “She introduced me to CHILD-BRIGHT and said the NYAC would be a great spot for me.” 

Since joining the team, Sierra has been a consultant for a variety of organizations and non-profits. He’s also helping to plan a new NYAC media series, which will aim to answer researchers’ questions on youth living with brain-based developmental disabilities. A journalism and communications graduate, Sierra is excited to explore the possibilities of audiovisual communications. “It’s a more accessible format,” he says, pointing out that some people with brain-based developmental disabilities struggle with text media. 

Today, Sierra is proud to talk about his disability. “I've embraced my autistic traits,” he says with a smile. “In embracing them, I'm able to be a better self-advocate. I realized I'm able to see things in a way that a neurotypical person wouldn't—and that’s valuable.” 

Lived & Living Experience Leaders: Meet Gillian Backlin

For Public Health student Gillian, self-advocacy is about making positive change: “I want to speak up for people in similar situations as mine.” 

Gillian Backlin, NYAC member

Gillian was born with spastic quadriplegic cerebral palsy (CP). “I’m reliant on a wheelchair and assistance for day-to-day things,” she says. From a young age, her parents encouraged her to advocate for herself, and she feels strongly about amplifying the voices of others:

“We live in a world that doesn't always give people like me the opportunity to speak for themselves.”

Gillian joined the NYAC in 2019, after hearing about CHILD-BRIGHT from her volunteering supervisor at Sunny Hill Health Centre, BC Children's Hospital. She was delighted to find a group of people who share her interest in self-advocacy. “And we all have different lived experiences and skills,” she says. “It’s very cool to see!” 

Since then, she’s been highly active within the network. In addition to providing feedback on several research projects through our Lived & Living Experience Consultation Service, Gillian joined the Knowledge Mobilization (KM) Committee and Policy Hub, as well as the Network Steering Committee. This March, she was also a panelist on a KM Family Hub webinar, “Pathways through Partnership: Knowledge Mobilization with Families of Children with Disabilities.” Currently, Gillian is a youth research partner on the CHILD-BRIGHT Social Network Analysis study, which aims to understand the social networks within and outside the network. 

Living with CP comes with its share of challenges, but in Gillian’s experience, the hardest part isn't the disability itself—it’s how the outside world interacts with it. “Society isn’t set up for other abilities,” she says. For instance, navigating her studies hasn’t been straightforward: “Figuring out accommodations is a lot of work. And if the instructor doesn't want to do things differently for one student, that puts me at a disadvantage.” 

Outside of school and the NYAC, Gillian loves writing, blogging, and spending time on social media. She has her own blog and online store called Spastic & Fantastic, where she opens up about her experiences to help destigmatize living with a disability. 

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!”