A Brief Reflection*

Yesterday was International Day of People with Disabilities! Is it a holiday? A regular Saturday? I’m not sure. What does one say to peeps with disabilities to recognize today? The possibilities are endless. I do know, though, that I have not 1, not 2, but 3 disabilities! Lately I’ve been reflecting more deeply on what it meant to grow up as a child with disabilities, and how came to where I am.

If I could go back and have a day with my five year old self, there is so much I would say. I would show her The Souls of our Feet, a film on disability that I made a couple of years ago, and  one of the accomplishments I take most pride in. Maybe a five year old wouldn’t understand it, but I could explain, we could discuss all that is brought up, and what’s already on her mind concerning the complexities of having Cerebral Palsy. I’d read this blog to her and show her that people are putting language to something that can feel so overwhelming.

I would bring her to see Shoes Off, a movement piece I’ve been working on that actually opens today. It might show her all the ways in which we too can dance, and that movement can be beautiful instead of a chore. I would bring her to a Phamaly show and introduce her to the amazing community I get to be a part of! Phamaly is the only professional theatre company in the world completely made up of actors with disabilities. I had the opportunity to intern with them this summer in Denver, Colorado, and it was the most incredible and fullfilling experience. Never before had I understood what it meant to have such a concentrated community of people with disabilities, and I wish I had known sooner. I would bring her to Emerson to introduce her to all the incredible allies here, so that she could learn to distinguish a truly supportive abled person from everyone else, and know at base that there are supportive abled bodied people, because it took me a hot minute to find them. I would take her for a walk to show her how far we’ve come, how smoothly steps are taken. Maybe that would give her something to look forward to when being pushed, and pushed, and pushed. It seemed like there was so much emphasis on making me “better”- what was wrong with me in the now? I hated physical therapy, and how hard I was made to work, when it was in fact that hard work that has gotten me to my current state of self sufficiency.

I would tell her she is beautiful, and that there is actually something quite pretty about CP. She won’t understand this in the moment; it’s something I had to learn for myself. But hearing it in this context might do her some good. Then, I would show her my scars, and warn her it’s going to hurt and be hard, and answer her questions. and tell her that people are going to tell her “no” but she’ll do it anyway. Her is voice is not too big, even when her sound seems to echo off of silent walls. In that vein, I’d tell her the endless meetings she’ll be sitting in soon are going to feel like the end of the world but they are not. I’d go to her exhausted parents and tell them they’re doing a good job, making the right decisions. I’d tell them thank you.

Why is the International Day of People with Disabilities important to you? I’d love to hear!

Today, this is where she stands.


*This post was originally published on Spastically Yours some time ago- see it here

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