Hi, my name is Rachel Martens, a 38 year-old mom of one from Calgary, Alberta, Canada with many hats to wear. I teach crochet, study as a part-time university student, and work as a research assistant for a KBHN-funded project called “Parents Partnering in Research,” (PPR) which is run through the CanChild Centre for Childhood Disability. This last role as a parent research assistant has recently led to the hat I’m wearing today: parent delegate at the United Nations.
My position with PPR has offered me so much in the way of experiences and education. In fact, I would even go as far as to say that this developed community has been personally therapeutic. I am able to help kids like my son, Luke, and other parents following a similar path. I like to think my son is proud of his mom.
I can’t say enough about how incredible this kid is; he’s been through a lot. Luke was born with a rare chromosome disorder called mosaic trisomy 22, which brought on associated diagnoses of autism and cerebral palsy. He’s much smaller than normal for a child his age, but he’s an active explorer who doesn’t let using a wheelchair get in the way of experiencing his own world. He’s a little joker and he absolutely lives to wrestle.
I pause a lot for reflection as summer vacation begins to wind down, and this young man starts his first year of junior high. He’s going to be 12 in a few weeks and I find myself thinking about the world that I want for him. Given his size, he really does roll through life as a little fish in a big pond, and I worry what sort of future I can leave him and other kids with disabilities.
Becoming a parent seems to have this effect on how you view the world, even more so when your child is born with a disability. You begin to see the fractures and inequalities in the system that create barriers to inclusion and community participation.
At the same time, I am able to see researchers tackling patient-inspired questions. Building these partnerships with caregivers and persons with disabilities are playing out with tremendous success, and the potential scope of this relationship is only just starting to be realized.
Author and social worker Brene Brown once said in a TED Talk that stories are “data with a soul”. This is one reason why I feel that lived experience carries such strong potential for impact on high-level policy. This is what motivated me to share my story and Luke’s story at the United Nations.
Looking to the UN
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 that we all carry a common system of goals for our kids.
This is why I jumped at the chance to help represent KBHN and CHILD-BRIGHT Network at the United Nations in New York this past June. This year marked the 11th session of the Conference of States Parties to the UN Convention on the Rights of Persons with Disabilities (CRPD). The first human rights convention of the 21st century, the CRPD “is an international law that provides guidance to countries on how to meet the human rights of persons with disabilities,” according to the Council of Canadians with Disabilities.
I’ll admit freely that I did not give much attention to the CRPD before this conference. Generally, a parent who would consider addressing this level of authority on human rights would have exhausted all other options. What is often forgotten is that these conventions are developed principles that should govern every country’s understanding of how we treat and support persons with disabilities. The CRPD represents a pledge to promote and ensure full enjoyment of human rights and equality under the law.
This year’s session theme was, “Leaving no one behind through the full implementation of the CRPD”. In response, barriers to inclusion and community participation were subjects raised in a recent policy paper written by KBHN Researcher Dr. Keiko Shikako-Thomas and former Network Trainee Dr. Jonathan Lai. This paper is what brought us to New York.
“Rights-Based Approaches for Children with Disabilities in Canada” addressed barriers from the perspective of Canadian children’s entitlements under current UN treaties. The paper used collected stories from multiple stakeholder audiences and current research to identify actionable points for disability-related needs. The authors touched on many points close to my heart: things like social inclusion, inclusive education, caregiver burden, the voice of youth and a whole lot more.
While at the UN, we shared the paper at what is called a side-event and presented it to the Canadian delegation of conference-goers which included Kirsty Duncan, the Federal Minister of Science, Disability and Sport at the time. It was the task of CHILD-BRIGHT Network mentor Susan Cosgrove, her teenage son Liam, and myself to share personal perspectives on what the CRPD meant to us as Canadians, and as persons impacted by disability.
I spoke about how I envision what my son’s rights could look like across his lifespan. Susan shared a touching yet heartbreaking story of how even in Canada there can be an imbalance of quality of care for families. How we need to be examining family audiences such as new Canadians.
I was so proud to hear Liam speak about what it’s like to live with autism. He shared what it’s like to be judged and said that if people took the time to get to know him they’d realize that he’s a really cool guy. Liam identified the necessary steps it would take to secure the future he desires and how knowledge of his rights would enable him to realize his dreams.
Looking beyond the UN
On days like that, having an opportunity to speak on behalf of Canadian families was larger thinking than I ever really could have imagined. Especially when I became a mom, this was something that was entirely new to me.
For me, being globally minded didn’t step too far beyond the evening news and scrolling through Twitter with my morning cup of coffee. Politics were embedded into dinner conversations on a regular basis growing up. I had a keen understanding of what I valued in a system, but the amount of work it took for those values and pieces of evidence to translate into policy seemed too complex to grasp.
It’s easy to find yourself in awe as you step on the grounds of the United Nations. The formality and history of the organization feels almost palpable in the air. It was the muse for a memorable evening of sharing a vision for the future.
The experience was also marked with caring moments, warm remarks, and hugs. For Liam’s birthday, the whole group sang Happy Birthday to him, watching his eyes light up in appreciation.
During the event, I shared the story of the first time Luke cognitively engaged with music. It was a song from the movie, Moana. Something in his brain kicked in and said that this was the most beautiful song that had ever been created. If you weren’t paying attention, he would make sure you were, pinching you and grabbing you, basically warning you to “share my joy!”
It’s stories like these that drive parents forward to being agents for change. Harnessing the energy with the potential to do really great things. When we can support the rights of children, memories like these become milestones that we can all share in and celebrate together.
I, for one, cannot wait to see what we as a country can accomplish for our kids.
To hear more about Rachel and the other Canadian delegates at the UN:
Click here to watch interviews from Rachel and the other Canadian delegates
Click here to watch the full side-event with their full-length presentations