Lived & Living Experience Leaders: Meet Logan Wong

Logan is social worker and one of the longest-standing NYAC members! For him, self-advocacy has become a way to raise awareness and educate others. 

Logan Wong, Co-Chair of the NYAC

“It's about being vocal and creating representation for people with disabilities,” he says. “Especially brain-based disabilities, because they’re often invisible.”

Logan, who holds a bachelor’s and a master’s degree in social work from the University of Toronto, knows all about helping people with social disadvantages. “Sometimes I feel like I’m a professional advocate,” he jokes. 

Logan has been with the NYAC since it was formed in 2018. Today, he’s the council’s co-Chair with Hans Dupuis. In the past six years, Logan has been a youth research partner on multiple studies and worked with organizations and universities across the country, including Holland Bloorview Rehabilitation Hospital. Currently, among other projects, he sits on the advisory committee for “What Decision-Makers Want,” a study of psychosocial interventions in Canada being conducted in partnership with CHILD-BRIGHT's Strongest Families Neurodevelopmental Program. 

Logan has parlayed his social work training and experience as a research partner into his work as an IDEAA consultant. The acronym stands for inclusion, diversity, equity, anti-racism, and accessibility; Logan uses this intersectional approach to help non-profits build more diverse and equitable work environments.  

As someone living with cerebral palsy, autism, and multiple anxiety disorders and who is trans and biracial, Logan is candid about the importance of lived experience within health research. "I came out as trans while working with CHILD-BRIGHT,” he says. “I changed my name, pronouns, and identity documents while on the NYAC.” He says that, throughout the process, everyone at CHILD-BRIGHT was incredibly supportive: “They accepted me for who I am as a person.” 

Logan is firm in his belief that engaging those with lived experience in health research leads to more relevant, impactful outcomes. “I'm grateful to CHILD-BRIGHT for giving me the opportunity to get involved in childhood disability research,” he says. “I’m looking forward to doing more on the NYAC.” 

You can learn more about Logan and his consultation work on his website.

Lived & Living Experience Leaders: Meet Mathias Castaldo

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. 

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.