The following was a speech I delivered at Eleventh Session of the Conference of State Parties at the United Nations in NY.
Thank you for being here this evening. My name is Rachel Martens and I am from Calgary, Alberta, Canada. Becoming a mom to a child with multiple disabilities presents a sort of duality in your identity. This duality has a system of priorities that at times works in tandem, and sometimes with one side taking priority over the other.
Both sides of this dual identity have a stake in introducing my son today. Clinician Mom would tell you that this is Luke. Born with a rare chromosome disorder called mosaic trisomy 22 and he was born with a laundry list of associated diagnoses such as autism, cerebral palsy, poor growth as well as being nonverbal. Mosaic trisomy 22 as best can be determined with current data occurs in roughly 1 in 30,000 to 50,000 live births. It was only in 2013 that a published formal assessment of data determined that mosaic trisomy 22 didn’t follow the common trajectory of other diagnoses often associated with incompatibility with life, but rather falls on a spectrum of function and lifespan unique to the individual. In sharing my story, I often feel as though he was born at a time in transition in conversations on both medicine and disability. This is a young man who craves his own path on every level. I credit the work of multiple clinics at Alberta Children’s Hospital with the fact that Luke is still with us today.
The other identity is known as just, well... “mom”. She would tell you that Luke is an almost 12 year old young man. For someone who is nonverbal, he gets his point across quite easily if he’s annoyed with you. He’s an active explorer who doesn’t let using a wheelchair get in his way of experiencing the world. He loves to play what he considers to be pranks on people and lives to laugh. Music has recently become another way for him to communicate with the world.
Starting out, I really won the lottery with our early intervention team of occupational, speech and physiotherapists. They saw a very angry child with a unique path of development. They came along side him and respected his way of thinking. They acknowledged his need for space and autonomy all the while working to create bridges towards trusting therapeutic relationships that helped him see the world is less of a scary place. All of this couldn’t have happened without a supportive Canadian framework of services that became a regular part of our home life.
As Luke approached school age, I could tell his team was hesitant about his future. At the time, the best we could be afforded was a life skills class. None of us were satisfied let alone equipped to advocate for an education that better suited his list of needs. It was with that we decided to pick up and move to another province closer to family and a school that afforded him more opportunity to grow. Looking back I am fully aware that this decision to move was available to us due to a remarkable amount of privilege. Many families with complex needs like my son’s have the added stress of functioning in a support system that’s inaccessible due to diagnosis centric standards or don’t qualify because they’re considered not severe enough for intervention.
In any case, parenting is a dance that is led by the child. The music is entirely their own, the partners change every now and then. And it’s an absolute thing of beauty to watch when each part is understood and works to support the artistry of the lead dancer.
I do a lot of looking back on the life of my family lately. What brought us to this point raising a young man who’s developing his own identity and engaging with the world, came with a recognition of his right to education and surrounding him with people who were open to communication and strategy in a system that supports the individual. The stories of Canadian families represent a broad expanse of experiences. But at the root of parenting a child with a disability I would argue we all carry a common system of goals for our kids. In 2012 two researchers at CanChild Centre for Childhood Disability in Hamilton, Ontario created a simplified explanation for parents of the World Health Organization’s International Classification of Functioning, Disability and Health (or the ICF for short) called the six f words in disability, which I believe reflects the spirit of the CRPD in the lives of families. A brief explanation is as follows:
Function: I may do things differently but please help me try.
Family: Mine plays a supporting role in my life. Please give them have an opportunity for having a voice too, they’re my biggest fans.
Fitness: please help me find ways to keep healthy.
Friends: connections with others is important to my development. Please help me find ways to hang out with my peers.
Fun: fun and play is how I learn and grow. Please help me find ways to be a kid.
Future: I will grow up one day. Please help me find ways to be a part of the community.
It’s been my absolute privilege to share these words with Canadian families as a Parent Engagement Coordinator for CanChild and Kids Brain Health Network. I facilitate a social media based advisory network for families engaged and willing to collaborate in research. Stories according to researcher and author Brene Brown are in fact data with a soul. And at the heart of these stories we have seen the common thread we share in supporting the dance of our kids. We have spent the past few years getting to know what sort of connection we can make together in the creation of research with real life application and have seen the benefits of real time knowledge exchange in an era where science is making a deeper impact by taking our work to the people. It was through this online community that we collectively celebrated the implementation of the position of Minister for Disability and cast a vision towards the future. More accessible collaboration has the potential to engage with greater depth beyond the time restrictions of the clinic appointment and to notice the sometimes subtle nuances of child development through the eyes of the kids and the parents and siblings who know them so well.
In my work in engaging parents, I see a generation of them who are seeking a way to step beyond both physical and mental stress. They see potential and carry ideas as to what would help create one amazing generation of kids. They mentor each other on system navigation on social media that in a way makes them well studied social workers for one another. When you invite researchers into this community as well, the combination of lived experience and scientific knowledge has the potential to create incredible outcomes.
I realize that engagement can’t always be logistically accomplished with a level of intimacy and conversation equitable to a family barbecue. But it’s this spirit of community that is already a uniquely Canadian quality. In order to realize the full depth and breadth of the CRPD and its function in Canada, this community of the mutually invested needs to be mobilized.
If I were afforded an opportunity to provide insights into supporting the implementation of the CRPD for kids in Canada there would be a few things I would consider.
I would create an assurance that all voices count in the creation of new policy. That means creating population counts of all Canadians affected by disability including children and hardly to reach cultures.
I’d consider seeking a rare disease framework and how it affects disability support system infrastructure as it affects 1 in 12 Canadians and 2/3 of them are children.
I would encourage more networking between the provinces regarding analysis of best practices for services.
I would seek to close the often considerable time gap between published research and its implementation into policy. And to educate families in seeing that their story has value in research and understanding that organizations like SPOR help in opening doors to collaboration with research institutions.
Meaningful collaboration in improving the lives of kids has been tremendously therapeutic for myself. The knowledge acquired has trickled down into my parenting and helped me advocate for Luke with less conflict and more evidence basis.
On days such as today, having an opportunity to speak on behalf of Canadian families is larger thinking than I ever could have imagined when I first became a mom. The video you saw of my husband and Luke is a snapshot of a moment where hearing a song from the soundtrack to the movie Moana seemed to unlock something in his mind that told him that this is the most beautiful song that has ever been created. If you aren’t paying attention while the song is playing, he will in fact either pinch you of take you by the face to remind you to share in his joy and live in the moment. It’s stories like these that drive parents towards being partners for change as it’s the energy with the potential to fuel the creation of great things. When we can support the rights of children, making memories like this as a family becomes a celebration of milestones that we can all share in and celebrate together. I for one cannot wait to see what we can accomplish as a country for our kids. Thank you for letting me share my family with you here today.
