Sunday, September 7, 2014


How tall am I? It's hard to say. It's been a while since anybody saw me standing. When filling out applications my parents put whatever number felt reasonable. Depending on how generous they were, I was anywhere between  171 to 178 centimeters. It's not like there's a way to know or anybody will check. When I was getting my Florida ID card for the first time, the DMV official asked me for my height. "Your guess is as good as mine"- I said. "You look 5- 08" she replied. And that's what I've been telling people ever since. It's not that I simply can't stand. If you try to lift me and get me to lean on something my knees are perpetually bent and my head is much lower than it should've been.It feels that with every passing year the spasticity and my body puts on my knees only increases. They bent more and more and it feels like my body weight presses me more and more to the ground. The last time you could see me standing I was in my leg braces with straps physically blocking my leg in the straight position. Without external force used to lock the brace (which was always painful and as I grew required more people to do it) I would never be able to stand. I remember one of the last few times we tried it I noticed, being I think 17 at the time that I towered over my mothered and it was a bit of an emotional moment for us. I guess you can take some measuring tape along every bent part of my body and then you'd know what my real " body length" is. But then, one has to ask, what is the benefit of knowing the height of a person that never stands? That couldn't stretch out their legs if they wanted to? Perhaps more informative would be to measure me in my sitting position from the ground up to the top of my head. This is how people see me everyday, and no doubt how they described me if I became I wanted man. But then, all chairs are different. Even mine, when one of the bolts ripped away from the metal frame suddenly became lower. Perhaps they should force me to stand on my bent knees, just to measure me. But that changes not only with time, but also depending on how tense, tired or relaxed my knees are. Maybe they should measure how body spreads out, from the highest point on my head to the furthest I can reach with my feet. A lot of those places, documents and institutions that ask for things like height, weight or "marks" are simply not prepared to deal with people my wheelchairs. Despite being in one ultimately all my life my passport says I have no distinguishing marks. It's not that I've been hiding either. I get that they're looking for mostly facial features, but if border patrol was ever to look for me don't you think that something about my sitting position or four wheels would be a better hint than any mole or blemish? My Polish ID has some unrelated leg condition listed in the remarks sections, because I guess it was the closest they had. Time and time again I'm reminded that this world wasn't created with people like me in mind. And when dealing with bureaucracy sanity always leaves the building.

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