A street preacher in my neighborhood whom I had known for quite some time told me recently that my mission is to make people understand what it’s like to be me. I wouldn’t put it quite like that but there’s a lot of truth to it. I’ve written about it it before: Cerebral Palsy will always be part of my life, affect me in one way or the other, so I might just as well accept it and move on. This the thing people will always notice it first when they meet me, so why should I ignore it? It will always be the elephant in the room. I have always said, it’s been a bigger issue for the world around me that it ever was for me. But when I see people who pity me, want to give me money or assume things not knowing the first thing about me, well that’s when it starts to affect me. When I go places that turn out to be not wheelchair accessible and nobody seems to care it affects me again. The problem is not how I feel about myself and how I see me, it’s what the world throws back at me and what’s reflected in their eyes. Because I’m fine and I love my life. But if I can’t make it a non-issue, I want to control the narrative. I want to grab this thing by the horn and turn it into an asset. Rather than seeing it as a social issue and a health problem, why don’t we talk about it as one of the many, many things that defined me. And I think on many levels it’s a fun story to hear. How I moved here from Poland in my mid-20’s looking for a place where I could finally be independent and self realized and included and how I had to battle everyone from my own law school to immigration to be where I am today. Let’s talk about how my disability partially shaped my ambition and my drive to succeed, my sarcastic and dark sense of humor. How about how all the things that happened to me made me want to get involved and help other people, do things that I think matter and I hope make a difference. Let’s talk about kindness and humanity. I want to make it about the celebration of life. About mind succeeding over flesh. About passion and excitement. Because at the end of the day it is a distinguishing characteristic and people these days will do anything to stand out. I didn’t have to have a sex tape out or be photographed without my underpants in a cab to be where I am today. I want to grab the bull by the horns. Because I do have a choice. They can either pity me or be curious what it’s like to be me. And I choose the second option.
Wow. Just Wow.
ReplyDeleteAs a person with a disability myself, (and we share the same disability), this is a powerful message. Now, you GOTTA tell me how you get people to offer you money. I don't have people do that to me. Maybe it's because I use a obviously expensive motorized wheelchair... heh.
Sitting outside Gallery Place waiting to meet up with my wife after work in downtown DC... minding my own business, indulging in my one bad habit (a smoke), a guy walks up to me and insists that he needs to give me money. That area *is* RIFE with panhandlers however I was dressed in business attire and the only difference between me and the other half dozen office workers enjoying a smoke in the same area was the wheelchair.
Delete