Friday, August 29, 2014

Left behind

As I think about what aspects of being in a wheelchair really get to me sometimes I have to mention my ultimate nemesis: flights of stairs. It's not that I want to be able to run up them one day, but that they often me feel isolated and unwelcome with their mocking presence. They're just there, I can't  get around them and there's nothing I can do. When I was a child my mother would me in front of a store in my stroller or later - wheelchair- as she went in to grab a few items. A lot of my childhood seems to involve me waiting outside for someone to be done what they were doing alone with my thoughts. Stores and public places in both Warsaw and Budapest had stairs everywhere. If it wasn't a full flight, an elegant three steps would lead you up to the door. My mother often struggled to pull me up there, but every time she did that, she had quite a work out. Having me walk up a floor by supporting me under my arm was in turn as exhausting exercise for me. A lot of times, if my mom thought she'd be done somewhere quickly, she would think it's really not worth it to get me up there. "I'll be back in five minutes"- it's probably the most repeated phrase of my childhood,  meaning again that I would have to wait outside.  And the thing is a  lot of times I wanted to go, I wanted to see, I wanted to experience something. Yes, you understand why you must stay, because you understand your limitations and reality clearly. But it doesn't make you feel that much better. You only learn to come to terms with  the best you can. Luckily I was a child with a big imagination, so the breeze on my face or the sound of the streetcar would inspire a journey inside of my mind.  Often all I would get is a comment on how I would not have liked it there, that there was nothing to see or that the selection was poor and it was actually a waste of time. But all that mattered to me is that once again I was left behind. In elementary school, when something happened and my classmates had to leave the room unexpectedly for some reason (because there was a show or an assembly) and the teacher felt it was too much of a hassle to move me, she'd make a friend or two behind so I wouldn't be there alone. It felt like assigned to them. They wanted to be there as little as I did, as we spend our time playing "Hangman" or Wheel of Fortune". There's a place in Gainesville called the Grog House. My friends seem to like it. I've never been. I'll  never get to go. There's an impressive flight of stairs, about half a floor's worth leading to the door. And I have to say that I'm bothered that there are places that  can't easily get to myself. To me it's more than just physically getting somewhere. It's the laughs and the joy my friends have that I don't get to be a part of.  And it's all of the things I don't get to go, see and experience. Sure, we can all go to places that are more wheelchair friendly, but having to compromise to accommodate feels a bit like leaving a friend behind so I don't feel lonely. And yes, when there's a place that I can't get to I feel unwelcome and unwanted there. I guess you could say that accessibility to me is in general more about how I feel about the world including me and me in it than physically getting places. That's why my foundation's motto is "Empowerment through inclusion".The better the world receives you, the better you feel about yourself, the more you can do. And as far as being left behind goes. It sometimes still happens. I could be at a venue that has a pool table or something else going on on an upper floor with no elevator access. I often hear: we'll only check it out for a minute, and for the next twenty I'm alone in a crowded room full of strangers. As much as I'd want to see what my friends are up to I can't fly over a flight of stairs. Thankfully I'm smart enough to find things and people to entertain me.

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