WAWOS turns 2!!
Posted Oct 16, 2019 by Jacquie Robison
On October 10, WAWOS celebrated its second birthday, and I spent time reflecting on the activity and the impact we've made together over the past two years. I looked through notes, reviewed minutes from board meetings and checked out photos from our inclusive mini-runway show at the fundraising luncheon we hosted in May. So much to be grateful for and still so much to do!
To mark the occasion of our nonprofit's birthday, I'm sharing some of the comments I made at that luncheon -- surrounded by friends and family whose support has been so powerful and important for me and my family.
<<When I became a mom, the notion that I would one day hear 'Your daughter has Cerebral Palsy' wasn't on my parenting roadmap. Sofia's diagnosis reminded me that we're our own mapmakers. And that means exploring new paths and finding new destinations. As I dug into this challenge of finding ways to celebrate my girl, I saw there might be a path to celebrate other children with physical differences and support their families. A path that led me here.
I didn't know much about Cerebral Palsy and neuromuscular delays, and as I educated myself, I realized that most of what I thought I knew was wrong. More than that though, I learned about the blind spots in my own thinking around physical difference. How I interacted with people who are otherly-abled. How important accessibility is...real inclusion and not just accommodation. These children -- like all children, want to be not just listened to, but heard. Not just looked at, but seen.
It has been such an instruction.
I've learned the importance of language for my child. The power of YET versus CAN'T. My husband and I tell our daughter, 'you're not yet able to do that' and the message she hears is 'keep trying...you'll get there'. Whatever 'there' looks like. But don't give up.
I've thought a lot about what it means to have not just a seat at the table, but to be dealt in to the game. To not assume that someone who looks like they might have difficulty doing something isn't interested in trying. In participating. Or being invited to participate.
I've reflected on my experience of being told that my daughter has Cerebral Palsy. Being told that she'd likely never step on her own. Receiving a laundry list of everything that may never be possible for her. And I thought, "we can do better for parents and families. We have to do better." My daughter isn't at this event today because she's on a 3-day, 2 night outdoor camping trip with her Third Grade Class. We're a long way from 'she might never walk independently.' And that's beautiful! WAWOS is working to build drafts of language to present to medical teams and therapists, so they can refer to it when delivering a diagnosis to a family. I want to disrupt how people perceive physical differences and change the narrative.
And, I want to thank you. All of you. In ways big and small, your support encouraged me to bring this idea of WAWOS to life. This beautiful community has committed to showing up, standing up and holding each other up. These things we're talking about are big issues and we aren't going to solve them quickly. But, we can start the dialogue now...with our kids and with each other. To understand how critical it is that we build a world where I'm encouraged to believe in my chid in the same way you're encouraged to believe in yours. That because my daughter may have to do things differently, doesn't mean she won't be able to do them or that she shouldn't have the opportunity. Disability is nothing more than a normal piece of human diversity. It shouldn't be treated as something less.>>
Thank you all for your belief of our mission of inclusion.
xx
Jacquie
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