The Rules of the Game

Sometimes I wonder if some parts of me cancel out other parts of me. 

Like for instance, I’m a Caucasian male, right? You’d think that would put me at the tip top of the patriarchy pyramid.  You’d think that I’d be perched way up there with all of the advantages and privileges that are the birthright of Caucasian males oozing out of every orifice.

But I’m also crippled. And that has always felt to me like it cancels all that other stuff out.  Like for instance, I was sent to a state-operated boarding school for cripples that I refer to as the Sam Houston Institute of Technology (SHIT). I might’ve been one of those gifted students who would’ve been placed on a fast track to the Ivy League schools. Or I might’ve been a dime-a-dozen mope with a C average. Who knows? I was never given a chance to find out because I was crippled and that was all that mattered. Cripples were sent to schools like SHIT and that was that.

I suppose it’s true that being a Caucasian male puts me at the tip top of the patriarchy pyramid within crippledom. It’s logical to conclude, considering the rules of the game, that a black woman who is crippled would have a much harder time making progress than a cripple like me. Every once in a while the patriarchy bends over and spreads its cheeks and says to an outside culture, “Psst. You can enter me now. But just the tip.” Thus, guys like me are the first ones to penetrate.

A few years ago, I was invited to be the commencement speaker at SHIT. I think I was invited because I am probably their star alumnus, even though I graduated from there 50 years ago.

Of all the people who have come and gone from that place throughout the years, I may be their best success story. Isn’t that sad?

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The Giant Neon Stereotype

After spending one night in Asheville, North Carolina, I felt closer to Jesus.

 It all happened because I am arbitrarily allergic to cats. When I say that I am arbitrarily allergic, I mean that sometimes I am and sometimes I am not. It all depends on the cat and the setting. I’ve lived in the same household with cats and they never bothered me at all. And I’ve been to some people’s homes where there was a cat present and even though I never saw it I knew that there was one there because I could hardly breathe.

Our fellow traveler had relatives who lived in Asheville and they were nice enough to let us stay overnight in their home as we were driving down to Georgia. But I was having trouble breathing and it was getting worse. I told them that I needed to spend the night at a motel. And, of course, it had to be accessible.

So our hosts told me that I should go stay at the Mountaineer Inn. But the problem was that I didn’t know how to get there. I had no idea how to find my way around Asheville. So our hosts gave me directions to a certain intersection and they said that when I get there I should look for the giant neon hillbilly. That would be the landmark that would let me know that I had arrived safe and sound at the Mountaineer.

I was accompanied to the Mountaineer by my pit crew member who went on the trip with me. I refer to the crew of people I’ve hired to help me do the stuff that everybody needs to do every day, like getting in and out of bed and getting dressed, as my pit crew.

And when we got to that intersection we looked around and sure enough, there was a giant, neon hillbilly. It looked like a granny sitting in a rocking chair and smoking a pipe.

Like Jesus, I was wandering around, nomadic and homeless. Except Jesus was Jed to his warm and comfortable home by a bright star. I was led to mine by a giant neon stereotype.

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No Ordinary Cripple

The traffic noise at the busy intersection was quite loud, so I couldn’t hear everything that the voice coming from behind me was saying.

 I was headed home, one of my pit crew members walking along beside me. I refer to the crew of people that I’ve hired to help me do everyday things, like getting in and out of bed and getting dressed, as my pit crew.

Anyway, we had just crossed the busy intersection when I heard a voice coming from behind me say, “….. Stephen Hawkins?... Superman?,,,”

When the voice stopped, I asked my pit crew guy if he heard what the voice said. My pit crew guy said that as we passed a guy who was panhandling, the guy looked at me hard and said to him, “Hey, man, didn’t Stephen Hawkins have one of those things? Didn’t Superman have one, too?”

 I assumed that the panhandler was referring not just to my motorized wheelchair but to my blower. I have this attachment that I put on my chair that makes it possible for me to drive it by blowing into a straw. It makes it a whole lot easier for me to navigate the uncertain terrain outside of my home than by trying to drive my chair by pushing the joystick with my hand. The polite name for it is a sip and puff device. But I just call mine my blower.

But the reason that I thought the panhandler was referring specifically to my blower was because there once was a time, not long ago, when the mere sight of a cripple driving around in a motorized wheelchair by pushing a joystick with their hand was enough to stir up  everyone’s curiosity. But things have gotten to the point where I see such cripples out on the streets pretty much every day. So I figured that this panhandler must have seen plenty of those ordinary cripples before, being that he spends all day out on the streets. It’s the nature of his work. I bet that guy has seen everything.

But I can’t remember ever seeing another cripple on the street who was driving their motorized wheelchair by using a  blower. So the only way even a worldly guy like the panhandler probably would ever see a cripple using a blower would be on television (Stephen Hawking) or in a movie (Christopher Reeve, aka Superman).

I guess I’m no ordinary cripple.

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Sometimes Awareness Really Sucks

 

I watched the movie The Wizard of Oz again for the nine millionth time.

That was probably the most influential movie of my childhood, as it is for a lot of kids. It was full of things that scared the hell out of me, like tornadoes, houses falling on witches, flying monkeys and midgets, But somehow, our hero Dorothy managed to survive it all.

 But now, when I watched it as an old man, I mostly just grumbled to myself. I never realized before how inaccessible everything is in the Land of Oz.

For starters, take the yellow brick road. Those bricks just look like cobblestones painted yellow to me. And when you try to roll down a cobblestone road in a wheelchair, you  get jostled all over the place because it’s bumpy as hell. So if Dorothy was in a wheelchair, she wouldn’t be able to just merrily skip down the yellow brick road, arm in arm with a scarecrow and a lion. She’d have to move real slow and hang on for dear life.

And it sure didn’t look like The Emerald City was very accessible to me. Sure, the entrance door didn’t appear to have a step. But it didn’t have one of those cripple buttons on it either, where you push it and the door opens automatically. And there were steps all over the place inside. And I didn’t see a single ramp or elevator.

And they sure made light of head trauma. I’ve known people who have taken blows to the head and it crippled them for life. But Dorothy gets knocked out and she wakes up in a technicolor fairyland. And then she’s back in Kansas, where everything is in sepia tones, and all is well. She doesn’t even have aphasia.

I could go on and on but I believe I’ve made my point. If I’d’ve been Dorothy,  I’d’ve been screwed. I’d’ve never made it back to Kansas.

I’ll never be able to view that movie through the same innocent eyes again. It’s like my wise old grandmother used to say: Sometimes awareness really sucks.

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Morally Inconsistent

 Maybe I should be out there trying to get pregnant women to drink lots of alcohol. That way there would probably be more babies born crippled. (Author’s note: There’s a condition known as Fetal Alcohol Syndrome, where a kid is born crippled because their mother drank alcohol during pregnancy. I don’t doubt that this condition exists, but I do wonder why I’ve never met any of these kinds of cripples. Because I thought I’d met every imaginable genre of cripple. I’ve met bleeders and autistics and spastics and CPs and MSers and two kinds of MDs, muscular dystrophy and macular degeneration. So you’d think that by now I would’ve met an FAS cripple or at least somebody who knows one. Oh well, I guess I will someday.)

Or maybe I should be one of those antivaxxers that tries to get everyone to not get vaccinated otherwise they might end up with autism or with a computer chip implanted in them so that their every move can be monitored by the government and/or Bill Gates. That way diseases like polio might make a comeback, thus creating more cripples (Author’s note: I am currently an antivaxxer, but only when I see a sign at a pharmacy trying to get me to come in and get vaccinated. I always say no thanks to that because I figure that the reason they’re making a big deal about getting vaccinated is not because I really need it  but because vaccinating people must make them a lot of money. I ask my doctor what shots I really need and I get those he tells me I should get,)

It would be stupid for me to do either of those things mentioned above, but isn’t that the way for me to be morally consistent? I mean, I go around now trying to get people to see that being a cripple is nothing to be ashamed of, that we deserve to be respected and celebrated for who we are.

That’s why I hate cure campaigns. I think they usually reinforce the message that being crippled is nothing but hell and so the best thing we all can do for the poor cripples is cure them so their lives won’t be nothing but hell anymore.

But isn’t it hypocritical of me to object so strongly to efforts to get rid of all of the cripples by curing us ali but not by trying to prevent us from becoming cripples in the first place? Shouldn’t my attitude in regards to cripples be the more the merrier?  Shouldn’t I be leaving a trail of banana peels behind me everywhere I go?

But I guess that somewhere deep down inside I must know that even if prevention campaigns are 100 percent successful, there will always be cripples among us. So its okay to be morally inconsistent.

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Not a Cripple-Friendly Town

As I drifted around the grocery store that was far away from home, I kept getting dirty looks. But all I was doing was minding my own business and trying to pick up a few groceries. So I said to myself,” Damn, this sure is not a cripple-friendly town.”

I’m going to name names here because I think it’s important that the truth be told. The town I’m talking about is Sturgeon Bay, Wisconsin, which is a little bit north of Green Bay.

And people kept looking at me as if they deeply resented my very existence in their space. I’m not used to that because it seems to me like most people are able to maintain a tight poker face when they unexpectedly encounter a cripple. If they feel alarmed they are able to  pretend like they didn’t even notice you were there. But not these people. No sir. They made no secret of the fact that they didn’t want me there.

But maybe that’s a good thing because at least they’re being honest. In a lot of places, people are afraid to admit that cripples and crippledness make them feel uncomfortable so they put on a fake smile or act like they don’t see you. Thus, a lot of cripples have a hard time relaxing around unfamiliar verts  (which is what I call people who walk because it’s short for vertical). These cripples are always wondering if the smiles and the body language of the verts are telling the truth.

Personally, I’ve gotten to the point where I don’t care if I make a vert feel uncomfortable. Life is too short to worry about that. I figure if they don’t like me being there they can leave.

In fact, I almost shouted out something like, “If you people don’t like it, you can all shove it!” But then a woman said something to me that made me feel real stupid.  She said, “Hey, what’s that! A Bears jersey!” As she walked past me, she playfully punched my shoulder and cackled out a laugh.

I forgot that I was wearing a Chicago Bears jersey in the heart of Packer country.

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A Fate Worse Than Being Fat

 

It seems that researchers have found that a  popular weight-loss drug may cause blindness.

 Normally, that kind of news would mean curtains for the company that manufactures the drug because it might make everybody freak out and stop buying that drug. But in this case, it might not be so bad.

Because you can be blind and still be cool. Or at least that’s how I think a lot of other people think. I mean, look at Stevie Wonder. Everybody thinks Stevie Wonder is cool. And yet everybody knows Stevie Wonder is blind.

I recently saw a jazz combo performing and one of the musicians was wearing sunglasses. It was indoors. And I couldn’t tell if the guy was wearing sunglasses because he was blind or because he was cool.

So, when someone does a cost/benefit analysis of becoming skinny but maybe becoming blind in the process, they might be more inclined to take the drug anyway and run the risk of going blind.

But if taking a popular weight-loss drug could cause somebody to be crippled like me, that would probably be a different story. It would be like those dumb shits who won’t get their kids vaccinated because they heard somewhere that vaccines cause autism. Even if that was true, these people are saying that they’d rather that their kids caught something like measles or whooping cough or the plague than maybe be autistic.

If taking the popular weight-loss drug might turn a person into a crippled old man in a motorized wheelchair like me, a lot of people probably wouldn’t take the risk anyway because they don’t think that anybody can be that kind of cripple and still be cool.

They would probably consider that to be a fate worse than being fat.

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