Last weekend, my family decided to take the ultimate road trip to New York City. The idea started about five months ago when Louise at BLOOM wrote about the NYC Disability Pride Parade.
This parade was conceptualized by a father and famous jazz musician Mike LeDonne. He wanted to raise awareness and create community pride about disability to honour the pride he feels for his daughter Mary, who has Prader Willi Syndrome.
The disability community in New York City jumped in with both feet and members from the community led the charge—creating awareness about the event, getting permits, planning the route, and connecting with participants. It was an example of inclusivity in action.
Participating in this event was important to us. As a family, we have experienced amazing examples of inclusion, acceptance and kindness. Unfortunately, we have also experienced heartbreaking moments where we’ve not only been blocked access but asked to leave due to our son Bryson's vocalizations—he is non-verbal and makes sounds to express himself.
Walking side by side with others who have lived this kind of experience in New York was very powerful. What struck me was how quiet the march was. Parades are typically rowdy and loud and expressive.
At this parade many of the people around us were non-verbal. It was much quieter, but no less jubilant and meaningful. Voices that aren’t loud can be missed—but not when people come and walk together, making their presence undeniable.
This reminded me of how very important it will be to continue being visible in our community, looking for any opportunity to include our son in “everyday” activities even when it means we will have to face glares, stares and confusion. That is no longer my burden, it is theirs.
I was so very proud that day to be included in this community—one that demonstrates the elegance of quiet and the boldness of the human spirit. We have so much still to do to ensure all people have the opportunity to lead a dignified, fulfilling life—and I want to be part of that transformation!
Laura Williams is director of Client and Family Integrated Care at Holland Bloorview.