Never without hope
Posted Feb 10, 2020 by Jacquie Robison
What does it feel like to have a physical difference? To have others look at your outside self and make assumptions about who you are, how you are or what you're capable of?
In the early years after Sofia's diagnosis, anyone who only knew me through Facebook updates would not have known that our daughter has Cerebral Palsy. This was a very deliberate decision by me and my husband. Not because we were embarrassed -- we took Sofia everywhere on all sorts of adventures -- making our way through airports with her step..step..pushing along in her walker. I remember her long hair tied up in a ponytail and swishing with every footfall as she planted her pink-banded AFOs along the terminal. She'd delightfully point out, "Momma, ANOTHER Starbucks...time for a cookie treat?" while some fellow travelers smiled and others shook their heads and tsk-tsk'd in my direction.
Those reactions were the one that got to me most. I wanted to admonish them and at the same time encourage them. I wanted to go up to them and say, 'LOOK at her...LISTEN to her...she's spirited and smart and interesting and kind and she has something to say. She has something to GIVE.' Eventually, I was less upset as I came to the realization that some people were just going to miss out on knowing Sofia because they had decided, in an instant, that she ended where her physical difference began.
How would any of us feel if we were defined by the thing that is the least of us -- particularly as measured by others?
As the idea for WAWOS took shape, we asked Sofia how she felt about being part of it. Did she want to be on the website and in social media? After all, this was her story, too. I love building this nonprofit with her involvement and it has prompted lots of conversations between us.
But the truth is, no matter how much time I spend with her...how many discussions we have about physical difference...and how often I reinforce that CP is the least interesting thing about her...I don't know how she feels.
I can't know exactly what it's like.
But, I can continue to advocate for inclusion.
To talk about the power of empathy.
Underscore the need to look beyond a diagnosis or a device. And, I will never stop hoping that through these actions, others will do the same.