13 October, 2012

On Curiosity And Other Things

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Mystic Metals Body Jewelry

On Curiosity And Other Things

I finally saw Prometheus this week. It is the greatest science fiction picture since Blade Runner. Hands down. I can understand the confusion that a lot of people who saw it experienced. But if you are a captive audience and pay attention, all of the information that you need is on the screen. It takes a little intuition, but it's worth it. Big time. I love Ridley Scott. I would consider abandoning my years of sobriety to have a beer with that guy. And get him to sign my copies of Blade Runner and Alien, of course.

So it's still spina bifida awareness month because it's still October. Starting to really feel like it too, which is nice. Yeah, I'm talking about the weather. Don't worry; this blog will get better. So since it's still spina bifida awareness month, I'm going to write another blog about living with spina bifida. Don't worry. The month will be over soon, and I'll go back to hating on people who write things about mod. You cats and kittens can indulge me for four blogs, right?

Life in a wheelchair. Let's talk about it. I talked specifically last week about a wedding I attended and the difficulties of navigating the place in the chair. This week, however, I'm going to talk more about everyday, and share some things that irritate me about chair life. First, let's talk about being in a chair.

It's hard to assess what strangers are thinking when they look on you, able or otherwise. When people, strangers, look on you, what are they doing? We think they are judging us mostly, don't we. We think that our clothes or mods or jewelry or hairstyle or makeup or whatever aesthetic we're sharing with people is the target for a stranger's staring. I'd imagine that a good portion of the time, this is true. But there is also a thing that motivates Homo sapiens to look and study with their eyes. Curiosity. Curiosity isn't a terrible thing. It keeps us alive most of the time. It keeps us from wondering into the saber toothed cat den and getting disemboweled by the beast who has a flavor for caveman. It also keeps us a distance from things that are unfamiliar until we can ascertain what it is we are seeing. Curiosity of our modifications is familiar territory. I personally get it a lot from little kids, which on the whole I don't mind. Curiosity is a wonderful and uninhibited characteristic of youth. When I notice a little boy or girl looking at my lobes or other piercings, I'll playfully do the pen in the ear trick, or stick my thumb through my lobes and whimsically pretend that it hurts. With adults, I say hi. Loudly and boldly. It usually startles them into the realization that they are staring. That's when I try to open a polite dialog and show the stranger that stretched lobes does not preclude civilized behavior or intelligence.

The challenge is the combination of the chair and the mods to the lookers. And my Rasputin beard too. And my relative youthfulness. There's a lot of shit going on there. What to stare at first? Not only am I serving an odd cocktail of an unusual color to the onlookers, but I'm serving them one in a beaker with the Hammer Films style smoke curling out of it. The lobes and the tattoos and the facial piercings I imagine are a little easier to swallow because, since our mod culture is a beautifully colorblind one, strangers have seen stretched lobes and tattoos on all flavors of people. It's becoming more normalized, which is wonderful. You would think that the wheelchair would also go down more simply than other odd aesthetics (like the goth girl with a parasol here at the bookstore) since the wheelchair has been around since the sixth century BCE, oddly found and dated around the same time in Greece and China. But we as a culture have a sense of what type of person thing ought to be piloting a chair. We think elderly, we think amputees, we even in this culture think super duper fat people. When we look on these types, we assess in our minds things that seem to add up in a logical sense. He's super old and can't walk. Makes sense. He has no legs and can't walk. Makes sense. He's super duper fat and can't walk. Makes sense in a sad and awful state of humanity kind of way. But when we see someone who is young, or an aesthetic participant in modern society, it befuddles people a little bit. Dude has piercings, tattoos, a metal t-shirt. He looks relatively normal. Why does he need a chair? When our eyes cannot quickly assess the sum of the variables, we need more information to quell our curiosity. Staring is the first step to that.

Which I accept. There's nothing wrong with staring. It gets us the data we need. But there are some things that starers or the curious ought to keep in mind before indulging their stares. The first seems pretty simple, but is often surprising how forgotten or ignored it is. Not all people in wheelchairs are paralyzed. Knowing that when looking on a wheelchair pilot can immediately quell some questions for which staring will not provide the answers.

I actually deal with this misnomer quite a bit. Mainly because I don't have a chair accessible vehicle. I'd love one, so if you'd like to donate to help get me one, I'm sure Saint Peter will get you to the front of the line. So when I park in a cripple spot with Sepultura blaring out of my car, cigarette hanging out of my mouth, and my face looking the way it does, people tend to scrutinize my legitimacy in parking in the spot. Then they see me walk around my car to the rear passenger side door and laboriously haul my chair out, unfold it, sit down, and wheel on my way. I don't blame a stranger's question of my needing the chair when they see me walk to get it, but what ought to be kept in mind is that the chair is a tool to aid in my mobility. Yes, I can walk a little bit. Yes, I can stand for brief periods of time. But both of these things hurt. Badly. They hurt to the point that I can't enjoy my life or do the things I'd like to do. So the chair helps. Does the chair relieve the pain? No, not really. But it allows me to spend a day at the zoo, a day at the mall, a day with my girl without slowing down the enjoyment of our togetherness. I get this at gigs a bit too. I sit down on stage on a stool, usually placed next to the drum kit in the back. I play hard and perfectly every night. I move my head, engage the crowd. But when I get off stage, I sit in my chair and people approach me, aghast that I am using the chair. Do you really need that chair, people ask me. Or they, playfully, slap my hand and say that I don't need it and I'm faking. And then I have to explain my situation. I have to try to explain about standing and walking and using the chair and what my legs feel like and what spina bifida is since no one has really heard of it. I'm glad to do it, but sometimes it feels as if I am a defense attorney arguing my case for the chair. That can be tiresome, but I do it with a smile and with a positive attitude in order to share with the stranger that the chair does not bring misery as much as it brings freedom.

Defending my need for the chair is hard on some days. Most days. But it's necessary. I'm sharing what life is like with this birth defect, one of which few people are aware. I hear from curious strangers, 'Sucks that you're stuck in the chair.' Yeah, I can see that point of view. No one strives to be in a wheelchair. Charles Xavier sure didn't. But I'm not stuck in the chair. Being stuck assumes that one is striving for something different and has been derailed by that in which he is stuck. I haven't been derailed. I won't walk as I did before, and the chair is a life necessity. I'm not stuck. You're not stuck in diapers as a baby. They are a life necessity. You're not stuck in glasses as your eyes age. They are a life necessity. The chair is the same. And so when I speak to these strangers, I try to impart to them the idea that wheeling around in the chair is not what I thought I'd be doing at age thirty-two, but it is what life is and I should celebrate it as a part of my beauty. No sense lamenting that your eyes are blue; it's what life has decided, so love it. Stay beautiful, kids.

Read more on spina bifida

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