2024 Frank Gavin Patient Engagement Leadership Awards

Now Accepting Applications!

The CHILD-BRIGHT Network is proud to launch the third iteration of the Frank Gavin Patient Engagement Leadership Award, which recognizes exceptional patient engagement leadership in pediatric brain-based disability research. Established in 2021, the award was named in honour of Frank Gavin, our former Director of Citizen Engagement, for his vital contributions to the network’s impressive growth as a SPOR entity. 

This year, we are pleased to announce that we will be granting a Frank Gavin award to not one, but two patient-partners: a parent, caregiver, or family member with lived experience, as well as a youth or former pediatric patient with lived experience. 
 
Do you know a patient-partner with considerable experience participating in patient-oriented research activities, and with proven leadership in patient engagement? Would you like to put your own name forward? We’re accepting nominations as of today!

Nominations are due by March 28, 2024

Visit the competition page for all the details, including the eligibility requirements and application guidelines. Good luck! 

Announcing the CHILD-BRIGHT Lived Experience Consultation Service

After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed expertise in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.

We’re now pleased to announce the launch of the CHILD-BRIGHT Lived Experience Consultation Service for researchers external to our network looking to engage CHILD-BRIGHT partners with lived experience in their own research projects.

The consultation service will be offered through one of three avenues, depending on the needs of the research teams, in English and in French: 

• Teams looking to incorporate the perspectives of youth with lived experience of a brain-based developmental disability (ages 14-29) will be invited to work with our National Youth Advisory Panel (NYAP). CHILD-BRIGHT’s NYAP, composed of youth members who have lived experience with a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021.

• Teams looking to incorporate the perspectives of parents, caregivers or family members (ages 30+) of a child with a brain-based developmental disability will be invited to work with our CHILD-BRIGHT Citizen Engagement Council (CEC). The CEC is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding partners with lived experience in all network projects and activities, to ensure authentic and meaningful engagement. As of 2023, CHILD-BRIGHT is now opening this consultation capacity up to research teams working in childhood disability across Canada.

• Finally, teams may also consult with both NYAP and CEC members, depending on their needs.

“Our CEC and NYAP members, by means of their lived experience as youth with brain-based developmental disabilities, or as parents or caregivers of children living with brain-based developmental disabilities, have accrued a wealth of knowledge in the patient-oriented research sphere, both because of their lived experience, and because of their time partnering with CHILD-BRIGHT. We’re extremely enthusiastic about putting that knowledge to good use with the CHILD-BRIGHT Lived Experience Consultation Service,” shared Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement.

Citizen Engagement Council welcomes six new members for Phase 2

Since the creation of our network, CHILD-BRIGHT’s Citizen Engagement (CE) Program has fostered meaningful engagement with youth and families. Its Citizen Engagement Council (CEC) is composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC’s role is to offer guidance to the network about embedding patient-partners in all network projects and activities, to ensure authentic engagement.

In order to continue offering this guidance in Phase 2, while assuming leadership nationally in promoting patient-oriented research in child health research, the CEC has been forming new connections and building relationships with new organizations and community groups, and individuals.

We’re now proud to introduce six new members to the CEC from across Canada. Their lived experiences, professional background, and insights as parents of children with brain-based developmental disabilities are a welcome addition at this juncture.

Meet our newest CEC members:  

Elaine Weng

Elaine Weng is a mother of three wonderful children aged 6, 4 and 1. In 2015, Elaine and her husband moved to teach in a small community called Fort Resolution in the Northwest Territories. They love living in the North and all their children were born in Yellowknife. In 2021, they found out their son, now 4 years old, has a rare genetic disorder called chromosome 16p duplication, which is highly associated with autism spectrum disorder (ASD). Elaine’s son was formally diagnosed with ASD in 2022. They decided to move to Yellowknife from another small fly-in community called Whatì for him to get regular speech and occupational therapy sessions. It has been a journey learning about her son, which is why Elaine is thrilled to be a part of the CEC. As a parent with lived experience, it would mean a lot for her to make a difference for other families and children.  

Elaine and her family love the outdoors. They play outside as much as they can until it either gets too cold in winter or too buggy in summer. 

Saba Jahangir

Saba has a Master’s in software engineering and is a freelancer. Saba is also homeschooling her neurodiverse child. She is deeply interested in learning about new research and innovations in the health and technology field. She’s thankful to have the opportunity to assist CHILD-BRIGHT’s diverse research initiatives, which cover a broad spectrum of ages and developmental phases. She finds this prospect exhilarating as it holds the promise of benefiting and shaping the future of our offspring.

Saba’s hobbies are reading, exploring the outdoors, participating and volunteering in various community programs, and spending time with her family. She looks forward to adding value to the CEC through her skills and experiences.

Chenxin Jin

Chenxin Jin obtained her PhD in materials engineering from Dalhousie University in 2016. While working as a postdoctoral fellow in the Department of Chemical and Materials Engineering, University of Alberta, she and her husband welcomed identical twin girls Laura and Layla. Layla has level IV spastic quadriplegia cerebral palsy while her sister Laura is typically developed. With her researcher background, Chenxin hopes to bring her ideas, insights and thoughts to supporting patient-oriented research, as a mom of both a neurotypical child and a child with disabilities.

She enjoys being Laura and Layla’s mom and you will find them involved in lots of community activities, advocating for inclusion and diversity, and spending a lot of time with their family dog.

Karena Crumpler  

Karena lives in the traditional unceded territory of the K'ómoks First Nation.

She was born and raised on northern Vancouver Island and currently resides in the Valley with her husband and two boys. Her oldest son lives with cerebral palsy; her family’s experience is what brings her to CHILD-BRIGHT and the CEC.

It is only in the recent years of her parenting journey that she has learned to trust herself, honour and value her voice, and advocate for her son’s care and consideration. She also has come to recognize that the knowledge brought about through lived experience is valuable and should be heard.

She wants to use her own complex upbringing of being of mixed heritage and reconnecting with her roots and Indigenous ancestry to elevate the needs of parents in more remote communities to be included and heard.

Her volunteer experience includes supporting families who have family members with disabilities. This includes community outreach as well as parent-to-parent support with the Family Support Institute. She is a Director for the Cerebral Palsy Association of BC as well a parent advocate on the BC Cerebral Palsy Advisory Committee with BC Children’s Hospital and Sunny Hill Health Centre. She is also a reflexology therapist – another avenue in her life that emerged from being a mom to a child with a brain-based development disability.

Michelle Vautour-Shales

Michelle is a human resources consultant with close to 20 years of experience specializing in recruitment, talent management and development as well as performance management. She has experience working in Canada and abroad and holds a Bachelor of Arts with a major in Psychology from the University of Ottawa. 

A curious lifelong learner, Michelle is motivated by discovery and by challenging the status quo through innovation and research to improve the outcomes of children with disabilities. Michelle is a strong advocate for knowledge sharing and patient involvement in research, having served as a Family Leader with the Children's Hospital of Eastern Ontario since 2018, where she has reviewed and provided input on a number of research projects. 

Michelle loves to think outside the box and put those skills to work to eliminate barriers to a fully inclusive society.  She is a passionate advocate for inclusion and accessibility and was nominated to sit as an Easter Seals representative on the Special Education and Accessibility Committee for the Conseil des écoles catholiques du Centre-Est.

In addition to her keen interest in research, having lived across the country, on both the Atlantic and Pacific coasts, as well as in Quebec and Ontario, Michelle hopes to bring her resourcefulness as well as her networking skills to CHILD-BRIGHT to help its growth and showcase the important work being done.

Suzanne Deliscar 

Welcome also to new CEC member Suzanne Deliscar!

Welcome to our new members!

CHILD-BRIGHT welcomes new members of our Citizen Engagement Council!

As CHILD-BRIGHT continues to evolve, we are increasingly working to ensure many voices are represented and heard on our Citizen Engagement Council (CEC), the body overseeing the network’s citizen engagement activities.  

With that in mind, we are thrilled to welcome three new members to the CEC, each bringing their own lived experiences and expertise to the table.  

Chaired by Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement, the CEC provides guidance to researchers on how to engage patient-partners, including parents of children and youth with brain-based developmental disabilities, in their work, and how to share information with them. In addition, the council advises the network on the development and implementation of evidence-informed practices, policies, services, and programs to improve patient outcomes, access to care and quality, efficiency, and effectiveness of health care.  

“I am delighted to welcome new and returning members to the Citizen Engagement Council,” said Sharon.  

“Our council brings together individuals with a range of experiences and perspectives around the same goal of making research more patient-oriented. I am excited about the change we will bring through our shared commitment.” 

The new members commenced their term in September 2021. Get to know them a little better below.  

Symbia Barnaby 

Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent living in northern British Columbia. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She is a single mother of six children, five of whom have special needs. She is trained as a practical nurse, a birth and postpartum doula, and a Reiki Level 3 Practitioner. She is also a storyteller, a filmmaker, and a Wisdom Translator.  

She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens.  

Symbia also volunteers as the Co-Lead of the Health Advocacy Team with Moms Against Racism Canada, a national non-profit organization.  

Samadhi Mora Severino 

As the parent of two children, one who has severe disabilities, Samadhi Mora Severino has been a parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program since its beginnings. She is also an emerging equity researcher in the areas of health and disability services and policy. 

A community advocate working with families of children with a neurodevelopmental disability and other disabilities, Samadhi is dedicated to making relevant and important changes in disability services and policies through equity, diversity, and inclusion. 

Samadhi’s experience includes research with children with complex disabilities, adults with disabilities, and Indigenous people with disabilities living in Ontario. As a Ph.D. student at York University, she uses mixed methods and participatory action research in relation to medical assistance in dying (MAiD), home care access, and palliative care access for people with disabilities in Canada.  

Samadhi has served as a member of the technical working group of Ministry of Health and Long-Term Care in Ontario to develop a provincial program for self-directed funding for children with medical complexity. She was previously a community board member for the research ethics board at Public Health Ontario. 

Phil Snarr 

Phil Snarr is from Winnipeg, Manitoba. He and his wife Marilyn have two children, their daughter Julia (aged seven) and their son Jack (aged five). 

Jack lives with cystic fibrosis (CF), and Phil and his family are actively involved in the CF community, both in Winnipeg and across Canada. In their down time, Phil and his family enjoy playing board games, going fishing, and swimming.  

Phil holds a Science degree in Microbiology and Chemistry from the University of Manitoba. Today, Phil works at the Medical School at the University of Manitoba, where his interests include pediatric research, patient-oriented research, and knowledge translation.  

“I think that citizen engagement is incredibly important in both the clinical health setting and in health research,” Phil says. “I am excited to join the Citizen Engagement Council and to share my experiences with the group.” 

Welcoming Carrie Costello as Vice-Chairperson of the CEC 

Carrie Costello (right) with daughter Emma

Alongside our new members, we are also delighted to welcome Carrie Costello as Vice-Chairperson of the CEC. 

Based in Winnipeg, Carrie is a mom to three daughters, one of whom has global developmental delays and a seizure disorder with Todd’s paresis. As CHILD-BRIGHT's Parent Peer Mentor, Carrie has already made invaluable contributions to the work of the council and the entire network. You can read more about Carrie and her work as a parent-partner in this blog post. 

Announcing CHILD-BRIGHT’s new Director of Citizen Engagement

As a patient-oriented research network that aims to engage all people touched by brain-based developmental disabilities as meaningfully as possible in all aspects of our work, citizen engagement is a core component of what CHILD-BRIGHT does. It’s only by creating and maintaining ever stronger connections with patient-partners, families, caregivers, and the wider community that we can fully accomplish our network’s mandate: to improve life outcomes for children with brain-based developmental disabilities and their families.

In our network, it falls to the Director of Citizen Engagement (CE) to solidify such engagement across the entire portfolio of network activities. Since 2017, Frank Gavin has, as inaugural Director of Citizen Engagement, expertly helmed both the Citizen Engagement program and  Citizen Engagement Council. As Frank’s term as Director comes to a close, we are thrilled to announce that community autism administrator and advocate and CHILD-BRIGHT parent-partner Sharon McCarry will be taking up the mantle as Director of Citizen Engagement and Chair of the Citizen Engagement Council.

Sharon is no stranger to CHILD-BRIGHT or the Canadian brain-based developmental disability community. In addition to her role as parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program, Sharon is a passionate community advocate for families living with autism spectrum disorder (ASD) and other neurodevelopmental disabilities. She is committed to making meaningful and significant changes in disability-related policies and services that benefit families.

In 2008, she founded La Fondation Place Coco, a Canadian charity that manages and operates the Little Red Playhouse (LRP). LRP is an integrated preschool, where young children, both neurodiverse and neurotypical, learn side-by-side in a supportive educational setting.

Sharon is also an active volunteer. She is a member of the Canada Revenue Agency’s Advisory Committee on the Disability Tax Credit, which advises the Minister of National Revenue and the CRA on how the Agency can improve the way it administers and interprets tax measures for Canadians with disabilities. An accomplished business professional, Sharon has also worked with numerous Fortune 500 companies in marketing strategy and brand management. She holds a BA from McGill University and lives in Montreal, Quebec, where she is a mother to two sons, one with autism.

Sharon will now bring these experiences in the professional, research, and advocacy realms to bear on her new role as Director, as she trains her sights on diversifying our patient-partner group and improving representation of inadequately represented populations in our network.

“After many years as a parent-partner, I am delighted to take on a more active role at the heart of CHILD-BRIGHT,” Sharon shared.

“In the past five years, CHILD-BRIGHT has nurtured an active and thriving patient and research community. I’m excited to come in and continue to shape the Citizen Engagement program at such a pivotal time for the network, as focus turns to ensuring the sustainability of its innovative patient-oriented research work in the years to come. It’s by continuing to engage all members of this community that we will create brighter futures for children with brain-based developmental disabilities and their families.”

“Of course,” Sharon added, “It is in no small part thanks to Frank’s efforts that CHILD-BRIGHT has been able to foster such a vibrant pan-Canadian community! I have large shoes to fill but am committed to building upon this work in the years ahead.”

Frank’s involvement with the network stretches back to its very inception. He played an integral role in the application to the SPOR Chronic Disease Network competition in 2015 that would lead to CHILD-BRIGHT’s creation. He then took a lead role in recruiting members of the Citizen Engagement Council and began chairing the council in the fall of 2016.

Between 2017 and 2021, he led the citizen engagement efforts of the network as Director of Citizen Engagement and member of the network’s Executive and Network Steering Committees. In that time, he led a number of initiatives to fruition, always guided by patient-partner input.

Along with the other members of the Citizen Engagement Council, he developed the network’s patient compensation guidelines, which have continued to evolve over the years to respond to patient-partner needs. He also created the Parent Peer Mentor role (currently occupied by Carrie Costello) to better support our parent-partners.

Frank also oversaw several initiatives that increased the responsiveness of the network to patient-partner feedback, such as the development of a protocol for collecting qualitative data through interviews with patient-partners and the researchers they work with, as well as a protocol for conducting exit interviews with patient-partners who left the network.

On a number of occasions, Frank represented the Citizen Engagement program at events external to our network, including as part of an ongoing CIHR-funded project to create a national SPOR Patient and Public Engagement Evaluation Framework. (The protocol for this project was published in February of this year.)

In 2018, he coordinated and organized a panel presentation by patient-partners from all SPOR networks at the CIHR's Strategy for Patient-Oriented Research (SPOR) Summit in Ottawa, an event that brought together 300 SPOR stakeholders, including patients, federal/provincial/territorial ministries, partners, researchers and clinicians.

He represented CHILD-BRIGHT when presenting at a 2019 Hacking Health webinar and at the IMAGINE Network's Annual Meeting where he identified possible areas of collaboration between our two SPOR Networks. He also represented CHILD-BRIGHT at the Conquering the Hurt Conference, hosted by the SickKids Pain Centre in 2020, and to a University of Toronto graduate class in 2021 about ethical issues specific to patient-oriented research.

“Frank has brought so much to the network,” expressed CHILD-BRIGHT Nominated Principal Investigator and Scientific Director Annette Majnemer. “His thoughtful reflections on all things patient engagement, his wisdom in navigating the challenges that arise in a network such as ours, and, most importantly, his devotion to brighter futures for children with brain-based developmental disabilities and their families will be sorely missed.”

To honour Frank for his important and vital contributions to our network’s growth and development, the CHILD-BRIGHT Network is establishing the Frank Gavin Patient Engagement Leadership Award. This award will recognize leaders in patient engagement in research related to children with brain-based developmental disabilities and their families. Stay tuned for details on this award and how to apply in the coming weeks.

In the meantime, please join us to thank Frank for his invaluable work in helping CHILD-BRIGHT strengthen its citizen engagement over the years, and welcome Sharon to her new role! 

Connect with Sharon by email at sharon.mccarry@child-bright.ca or on Twitter @sharon_coco.

CHILD-BRIGHT Youth Advisory Panel Completes First External Consultation

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service. Youth member Gillian Backlin accepted the first consultation mandate external to CHILD-BRIGHT and shares her experience consulting with the Partnering for Pain and iOuch research teams in the winter of 2021, as well as her thoughts on why it was a valuable experience for all involved.

“I’m happy to share that the NYAP has completed its first consultation!” says Gillian Backlin. “Our consultation service provides researchers with the opportunity to connect with youth with brain-based developmental disabilities, like myself, who offer first-hand knowledge and experience to their research studies.”

In fall 2020, the Partnering for Pain and iOuch research teams approached the NYAP with a request for consultation focused on virtual care during the pandemic as part of a project funded by the Ontario SPOR SUPPORT Unit. The knowledge mobilization project aims to ensure equity and inclusion in virtual care and identify best practices to support diverse populations of youth with chronic pain. The team’s objectives were:

• To facilitate collaborative dialogue regarding virtual care recommendations for diverse pain populations, including youth with pain and complex medical care needs, and their families.

• To engage diverse stakeholder groups in contributing to recommendations for virtual care best practices in pediatric chronic pain.

• To share findings related to identified virtual care recommendations with relevant stakeholder groups and explore how these recommendations could be tailored to best address the needs of vulnerable pain populations.

The Partnering for Pain and iOuch research teams presented a poster on their knowledge mobilization project at the 2021 CHILD-BRIGHT Virtual Symposium.

 To help reach these objectives, the team was looking to consult with a young adult living with pain and complex medical care needs (including brain-based developmental disabilities) to co-design and co-lead a collaborative dialogue session with youth to explore their experiences with virtual care.

“Following the review of their consultation service request, my fellow NYAP members and I decided that I would be best suited to meet with this team,” notes Gillian. “As someone who deals with chronic health issues that now have to be treated virtually, I was able to provide insight from my own personal experience that resonated with other participants. I was really excited to get the opportunity to use my experience to help others.”

This study team brought together many different groups for several virtual sessions, such as Black youth living with painful sickle cell disease, Indigenous youth with chronic pain, youth with pain and complex medical needs (including those with brain-based developmental disabilities), as well as their family members and healthcare professionals. “I took part in the planning meetings that  brought these many stakeholders together, joined a call with parents of youth with complex care needs, and helped facilitate a discussion with youth with complex care needs,” explains Gillian.

“ “Gillian’s involvement was crucial. She helped us develop both the content and structure for our virtual engagement sessions. Her feedback was also critical in ensuring the sessions were accessible for youth living with complex medical needs across Canada.” ”

— Project co-leads Dr. Katie Birnie and Dr. Jennifer Stinson, in the post-consultation feedback survey that completes each NYAP consultation service contract.

“On my end, I found the team’s genuine interest in creating a fruitful and accessible discussion for all made this process comfortable and enjoyable from start to finish,” says Gillian. “The great thing about this study was that it was an open conversation that allowed for the sharing of experiences and different points of view. It is my hope that this feedback will encourage care providers to continue to do their part in ensuring that the virtual care patients are receiving meets their specific needs.”

 Learn more about the project here.

CHILD-BRIGHT Youth Panel Members Launch a New National Consultation Service

Download our consultation service ad

CHILD-BRIGHT is happy to launch a new consultation service, managed and led by our own network youth! 

After two years of advising CHILD-BRIGHT projects on optimizing youth engagement activities, CHILD-BRIGHT’s National Youth Advisory Panel members are today launching a new fee-based consultation service. Using this service, Canadian researchers working on childhood disability research projects not already funded by CHILD-BRIGHT can, like those researchers who are funded by CHILD-BRIGHT, get and integrate the perspectives of youth with brain-based developmental disabilities in their work, as they design and execute their studies.  

Hear from youth panel member Gillian Backlin on why seeking and integrating the perspectives of youth when doing research matters, and what consulting via our new service can bring to the table for Canadian researchers working on childhood disability projects.  

Hello everyone! My name is Gillian Backlin and I am a member of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). I live in Vancouver, BC and was thrilled to be invited to be the first member representing the West Coast. As a person with a disability who is well-versed in the health care world, I’ve always held an interest in patient involvement and advocacy; my other main interest is writing – for example, I have my own blog. It has always been a dream of mine to be able to combine both passions, so I’m excited to have the opportunity to write to you here and introduce a new NYAP offering that I have been involved in setting up: the CHILD-BRIGHT NYAP consultation service. 

In my two years working as a patient advocate in an official capacity (and a lifetime of advocating for my care), I have noticed an evolution in the health care research community. Researchers are discovering the value of listening to and integrating perspectives of youth like me, who are often directly impacted by the research study in question. 

In CHILD-BRIGHT’s case, we represent youth with brain-based developmental disabilities. The CHILD-BRIGHT NYAP was created to involve youth who have lived experience with brain-based developmental disabilities in developing research protocols, recruitment strategies and more. The panel, which I joined in January 2020, is composed of six Canadian youth members from all across the country, all of whom have different backgrounds, abilities, education, and skills. Our only similarity, aside from all having brain-based developmental disabilities, is our shared passion for youth involvement in research! 

We are committed to having the voices and perspectives of youth at the forefront of research that is meant for us. It is with this goal in mind that the NYAP is proud to introduce our consultation service. The consultation service is offered for a fee to provide advice to Canadian researchers working on childhood disability research projects who are not already funded by CHILD-BRIGHT.  

In my books, this is a win-win for the youth members of NYAP and researchers alike. On our end, we have the opportunity to potentially shape research that could impact others living with brain-based development disabilities. Meanwhile, childhood disability researchers will have the opportunity to consult with youth with disabilities who are currently involved in patient-oriented research as patient-partners or committee members.  

Given the diversity of the panel (you can learn more about my colleagues on the panel by reading their member profiles here), researchers can connect with those who can offer the most valuable information to their study. NYAP committee members can be consulted throughout different stages of research projects, from problem definition and study design, to recruitment strategies, survey and interview guide design, data analysis, and more. 

By consulting youth members who represent those targeted through their research, researchers will have the ability to better confirm the validity of their research priorities and test whether the study or project in question is responding to the needs of youth with brain-based developmental disabilities. 

Because panel members are located in four different provinces, we also offer perspectives that have been shaped by the health care system in our own areas of residence, and we can incisively comment on the different experiences of moving through these systems. As a result, input from NYAP members offers many potential benefits for a research project involving youth with brain-based developmental disabilities.  

I can’t wait to see what consultation requests we receive, and what impact the service will have on research projects in Canada! Apply now to team up with the NYAP on your next research project. We look forward to working with you! 

My family’s adventure to the United Nations to share our view on rights-based approaches to disability in Canada

By Susan Cosgrove

When my son Liam was three years old he couldn’t carry a conversation, exist in a crowd without getting overwhelmed, or interact with new people without panic. So much of my time and energy was consumed with accepting the things he could not do that I just couldn’t imagine that we would welcome his 15th birthday together, celebrating the biggest accomplishment of his life.

Attending the Civil Society Forum

The United Nations Convention of the Rights of Persons with Disability (CRPD) is an international law that protects and promotes the rights of people with disability; made up of global guiding principles to ensure that people with disability can access the same rights and opportunities as their fellow citizens. One hundred and seventy-seven (177) countries have agreed to the convention – and Canada is one of them.

Two weeks ago, the 11th annual Conference of the States Parties to the Convention on the Rights of Persons with Disabilities took place at the United Nations Headquarters in New York City. Attended by both National governments and civil society organizations from around the globe, the goal of the event was to share knowledge about how people with disability are living with their rights in participating countries.

This brings us to my proudest experience as Liam’s mom. Over the past decade Liam has learned how to use his unique skills and interests to become an ambassador for children with disabilities. He has shared his thoughts with doctors, families, health care administrators, donors and policy makers in Toronto. When we were invited to participate together on a panel in New York City discussing rights-based approaches to disability in Canada, we did a happy little dance together.

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

As a team, Liam and I have a lot of experience to draw on. I have been engaged in research for years as an advisor, co-investigator and spokesperson. I recently began working for the CHILD-BRIGHT Network as their first Parent Mentor. As I begin this role I am focused on learning from the parents involved in the network about how they have engaged in the different projects and programs, and about their hopes for the future of research. I plan to build on these learnings to help connect and inform parents. And it is through this role that I had the opportunity to join the group attending this important landmark event.

Liam has come into his own thanks, in part, to the research world. He began as an enthusiastic participant who loved the activities and personalities of the researchers and health care providers he interacted with. We quickly discovered that he was a skilled ambassador who uses his unique charms to share his thoughts with policy makers and politicians. The opportunity to do so on such a grand scale – at the United Nations – was Liam’s dream come true.

For such a young person, Liam didn’t take the opportunity to influence global leaders lightly. He was there to show them what was possible for a young person when his rights were respected and enforced and to share his hopes for his adult life. He talked about his rights as a Canadian youth with disability and his hopes for the future. He dreams of one day being a mechanic, with a family and a home. He knows that he will require more assistance and support than his non-disabled peers for his entire life. He is willing to put in that extra effort and plans on using his future voting rights to encourage governments to match his efforts with their support. That was his message, that was his voice.

Liam takes Manhattan

By being engaged in research in so many capacities over the years, I have learned a lot about the power of lived experiences. It’s as important to bring first-hand perspectives to every aspect of health care and policy development, as it is to bring them to research. Our personal stories keep goals in perspective and remind those in positions of influence why their decisions matter. It’s imperative for both families and professionals to understand the power of engagement. In the past, disability research and policy relied heavily on numbers, trends, reports and data, but lacked the human influence of those living with disability. But now people with disability and their families are becoming an essential part of the team and having direct influence on their own futures. And this is what we felt by being in this global forum. We joined other people with disabilities from all corners of the world: families, youth, adults, side by side with government officials and UN members to share our perspectives and discuss what we think and know is important.

Families may read this and think “Well, I’ve never been invited to the UN and I don’t like public speaking – so this isn’t something I can do.” But influence happens on many levels and from all types of people. It can be as simple as being informed and exercising your right to vote for a government that promotes the well-being of people of all abilities. It could be sharing information with other parents, your child’s school or people in your neighbourhood about the existence of the Convention of the Rights of Persons with Disability (CRPD). In reality, by raising children with disability who are informed of their rights and how to advocate for themselves, we are taking the first steps towards creating a more inclusive future for them.

Rachel Martens’ presentation

At the UN we were part of a delegation that included scientists and policy makers, Liam and me, another youth delegate and another parent. Rachel Martens is a mom from Alberta who is raising a 12-year-old son with multiple disabilities. She works with the Kids Brain Health Network as a Parent Engagement Facilitator for the online group “Parents Partnering in Research”. In her writing on our experience Rachel asks an important question that relates back to a policy brief compiled by two of our team members: “What if the CRPD was the start to the conversation to ensure that Canadian children living with a disability get the best start in life?" 

Such was a question posed by Dr. Keiko Shikako-Thomas and Dr. Jonathan Lai in the research brief and research presentation they gave during the Canadian event at the UN conference. The event brought together a partnership between two pan-Canadian networks focused on brain-based disabilities: CHILD-BRIGHT Network and the Kids Brain Health Network to facilitate the opportunity to share this research work and more importantly: to bring the voices of parents and youth into this arena. I am thankful for having been provided an opportunity to be a part of the delegation that went to share what we are learning through research on the rights of children with disabilities, and through our everyday lived experiences in Canada. The Canadian event was hosted in partnership with the Government of Canada through the Canadian Minister of Disability and Sports and Science, and I was privileged to be able to share a glimpse into what life is like parenting my son with multiple disabilities and what I felt about his rights as a Canadian citizen.

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

I was grateful to get to know and work with Rachel. Her son’s challenges are so different from Liam’s, yet we found we shared a sense of sisterhood – an almost automatic understanding of the unique challenges that come with raising special families – no matter how they present. This comes to show the power of connecting with others, sharing experiences, and learning from each other – a lesson I wish to share with other parents in my Parent Mentor role at CHILD-BRIGHT. While we were there, Liam naturally turned to her as another mom figure and sought her out when he felt unsure. This is a tiny example of the power of unity in our special community. I felt comfortable sharing with her the intimate details of Liam’s care and she felt comfortable stepping in as needed. Through our relationships with other families living with disability we create a stronger whole, a louder voice. When parents like Rachel and me have the opportunity to speak for our community, we can feel the power of Canadian families and are humbled to be their representatives. I want to finish with a thank you to those families:

To all those parents – just like me – up at 4am and then spending the day wondering if the school will call, I am so grateful to you for all that you do and your infinite strength. Together we will change our city, our country, and our world!

To learn more about getting involved at CHILD-BRIGHT, visit our Get Involved section.