Destined to be a Non-conformist

 

If you’re going to find happiness and contentment as a cripple, it helps to be the kind of person who likes being a non-conformist (and I don't mean in the religious sense). 

You don’t really have a choice in the matter. Sooner or later, your body and/or brain are going to defy your commands and do whatever they damn well please whether you like it or not. That’s how crippled bodies are. Eventually you’re going to walk funny or talk funny or throw a big seizure at the most inopportune time.

Your body is never going to completely conform to the norm no matter how hard you try. So you might as well embrace being a non-conformist. I know that there are a lot of fake non-conformists in the world. They conform to the standards that are necessary to qualify for membership in  whatever pack of non-conformists with whom they are conforming today.

But a lot of cripples are natural born non-conformists. It’s easier to come to grips with that reality if you’re a cripple who has no chance of passing as a vert (which is what I call people who walk because it’s short for vertical). I haven’t walked since I was 17 years old. And even before then the best I could maybe do was walk a little around a room if it was a small room and I was holding onto the walls.

So whenever I went out in public, I didn’t even think about trying to tell my body to walk like a vert because I knew it wouldn’t listen to me. It was going to play by its own rules.

I was destined to make a mockery out of a lot of things just by being myself. To be ashamed of that was to be ashamed of myself. So the only way I was ever going to learn to love my crippled self was to love being a non-conformist. Because that’s what I am.

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Cripples Riding Camels

 

Unlike some of my fellow cripples, I have no desire to ever ride a camel.

This must be a relatively common phenomenon because I’ve seen several pictures of cripples riding camels. But in order for that cripple to ride, first someone had to climb up on the camel’s back and construct a small scaffolding that will hold the cripple upright. Because otherwise the floppy cripple will lose their balance and fall right off of the camel as soon as it flinches.   

So in these pictures of cripples riding camels the cripple is snugly secured to the scaffolding with an elaborate intertwining of straps and ropes. It doesn’t look very comfortable to me. And to me a prerequisite for having fun is being comfortable. (I also wonder how the cripple boarded the camel. It must’ve required the assistance of at least four verts, which is what I call people who can walk because it’s short for vertical. Two of the verts probably lifted the cripple out of their wheelchair by grabbing them under the armpits and knees and then swung them back and forth in order to build momentum to fling the cripple into the air on the count of three. And then the two other verts who are up on the camel’s back have to catch the airborne cripple and position them in the scaffolding and tie them in.)  

Thus, I think the only kind of  rush I would get out of riding a camel is the daredevil rush you get when you do something stupid and reckless and survive. All the enjoyment is in retrospect. While you’re in the middle of the stunt, all you’re thinking about is getting out of it alive. When it's over, you feel the sweet release of relief.

I don't envy the fact that verts can spontaneously ride a camel and I can’t. That's not one of the losses of crippledom that I mourn. I might feel differently if I lived in the desert and I was surrounded by sand and riding a camel was the only way to get anywhere, like just going to the drugstore. Motorized wheelchairs like mine suck when it comes to driving through sand. They just sink and get stuck. That might be enough to make me consider going through all the hassle of trying to ride a camel.

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Updating my Pit Crew Want Ad

I’m looking to hire someone to join my pit crew. That’s what I call the people who come to my home every day and help me do stuff like get out of bed and get dressed.

So I have to update the want ad I usually post. I feel like I have to make it clear, among other things, that I don’t have a piano. Because I  like to be up front about what the job entails so applicants will understand what they are signing up for. And there’s been a lot of commercials on televion lately for home healthcare agencies. And these commercials feature a video montage of what it’s like to be paid to go into someone’s home and help them out, like my pit crew does for me. It shows stuff like the caregiver sitting on a piano bench next to an old person and singing along joyously while that old person plays and sings old time standards.

That’s why I feel compeled to include in my ad that I don’t have a piano. Because if someone saw any of those commercials, they’ll surely get the wrong idea of what the job is all about.

I also remember seeing in a montage a caregiver leading an old person by the arm to the gazebo in the backyard. I don’t have a gazebo. Hell, I don’t even have a backyard.

And I remember seeing in the montage an old man painting a still life of sunflowers. So I should probably mention in my ad that I don’t paint sunflowers.

I never see in the montages anybody doing the kind of stuff my pit crew people do for me, like hauling my ass on and off the crapper or giving me a shower.

That’s why I think I ought to update my ad. I wouldn’t want anybody to think that this job is all glamour.

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Until Life do us Part

 Here’s what I know about those staunch pro-lifer types:

Their bottom line is to get a federal law passed criminalizing abortion (and maybe even the use of birth control) in every state.

I also know that if they’re ever going to pull off anything like that, they’ll have to disguise that law as something else. Because it’s getting to be where more and more people don’t like that idea.

But I also know that a lot of those staunch pro-lifer types fancy themselves as the best friends of cripples because a lot of fetuses get aborted when it is discovered in prenatal testing that they will be crippled, like with Down Syndrome. And so they think that they’re standing up for cripples because they’re standing up for crippled fetuses.

The problem is that those staunch pro-lifer types are usually among the first to stop giving a shit about what happens to these crippled fetuses once they are born. They attack the public programs that crippled fetus may well need to survive as a crippled human, especially if it is a poor crippled human, like Social Security and Medicaid.

So maybe those staunch pro-lifer types could disguise their meddlesome legislation as a civil rights law and thus pass themselves off as freedom fighters. They could call it the Fetuses with Disabilities Act.

All the law would have to say is, “Fetuses with disabilities have the right to be born.” And then there would be a paragraph or two about how therefore nobody anywhere can ever have an abortion or use birth control because it might deprive a crippled fetus of its right to be born.

That’s all the Fetuses with Disabilities Act would have to say. Because that’s all that matters to those staunch pro-lifer types.

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Change?

 

I’ve talked before about how if one of my assistants goes out and about with me enough times, someone will inevitably refer to them as my son (or daughter.) It doesn’t matter if  my assistant is white or black or Latino or Asian or whatever. It’s happened to them all.

Usually what happens is someone sees me being assisted outside my home by one of the people in my pit crew, which is what I call the people who help me every day to get out of bed, etc. And the observer is curious about the nature of our relationship because most people’s idea of how things work is that the people who assist cripples every day are nurses or some sort of medical professionals. But my pit crew people don’t wear surgical scrubs or nurse-looking garb, They wear regular civilian clothes

 And so the observer concludes that if this person is not a medical professional then they must be from my family because those are the only other people who regularly assist cripples. Thus, observer says something like this to my pit crew person: “Its really great the way you help your dad.”

Something similar even happened to my pit crew member, Victor, although he’s older than me and black. Victor accompanied me to a pharmacy to get a vaccine. The pharmacist didn't seem to know what to make of us, probably because Victor wore civilian clothes and he was too old and black to be my son. So the pharmacist says to Victor, “Are you his guardian?”

I’ve also said that I look forward to the day when this doesn’t happen anymore because I think the level of confusion reflects how little a lot of people know about how cripples like me make our way through the world. It shows that too many people still assume that cripples who need as much help as I do either are sent off to nursing homes, where the medical professionals can look after us, or family helps us out for free. They have no idea that there are public programs like the one through which I hire my pit crew. I place ads and interview people and I hire the people I want and I set the schedule and determine the tasks and they get paid with state funds for being my assistants. It’s a great alternative to going into a stinkin nursing home or relying on family to help for free.

So the day when pedestrians stop thinking my assistants must be my offspring will be the day when it’s not so hard to imagine cripples getting assistance in the socially-cooperative manner that I do.

Well recently I went to a car repair garage with one of my pit crew guys, who is 23. And the mechanic says to me, “Is he your grandson?”

Things have changed, but not in the way I hoped.

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Of Predators and Prey

 

There’s one thing that seems to make humans unique from other species of animals. As far as I can tell, humans are the only animals that switch sides and join up with their predators so as to try to convince them to change their ways.

Like for instance, you don’t see a hen hanging out with foxes, just so the foxes won’t fuck with them.

But humans do that kind of stuff all the time. Just take a look at the republican party. There are the Log Cabin Republicans, who are gay. They think republicanism is great, except for that homophobic stuff

And there are a few black republicans, too. They think republicanism is great, except for that racist stuff.

There are Joe Worker republicans who seem to think that the republican party is on their side.

 Well you can’t have it both ways. If you scoop all the homophobia and racism and screwing over working people out of republicanism, there isn’t much left. It’s just as silly as if the hens hung around with the foxes, hoping they could convince foxes not to eat hens anymore. It ain’t gonna happen.

If the foxes did allow hens to mingle among their ranks, they would probably use them as unwitting decoys. to lure in their fellow hens. Their job would be to convince the other hens that the foxes aren’t such bad guys after all. Once you get to know them, you'll see that the foxes really do have the best interests of hens at heart. And once enough hens flew the coop and came on over to the other side, the foxes would gobble them up. That’s what being a fox is all about.

It works the same way with the republicans. As soon as enough gay and black  Joe Worker republicans convince enough of their own kind to come on over because this is the place to be, the republicans will gobble them up. That’s what republicanism is all about.

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Down Syndrome Reveal Party

 These days you can know what gender your future child will be before it is even born. And so some people throw one of those silly gender reveal parties, where they tell all the invited guests whether the fetus is a boy or a girl. But the information is delivered with great fanfare. Dozens of pink or blue balloons might be released into the air. Or maybe a plane might fly overhead pulling a banner that says IT’S A BOY or IT’S A GIRL. There might even be fireworks involved somehow.

You can even purchase items for gender reveal parties.  For instance, there are gender reveal smoke bombs and confetti cannons.

These days you can also find out a lot of other things about your future child before it is even born besides gender. You can find out whether or not it will be crippled and if so how. You can find out if the kid will be crippled for the same reason I am. And when that happens, people don’t start thinking about having festive events to celebrate their fetus. People instead start thinking about aborting the damn thing.

That’s how a lot of fetuses that will eventually become people with Down Syndrome get aborted. I don’t think there ever has been such a thing as a Down Syndrome reveal party. No, the best a fetus like that can hope for is that the mom will quietly continue with the pregnancy.

Throwing a Down Syndrome reveal party would be considered by polite society to be tastelessly disrespectful. The proper etiquette for an occasion like this would be to have a somber event that’s more like a funeral. Everybody shows up and offers their condolences. No confetti cannons or  fireworks or anything like that. That could be seen as making light of tragedy. If there are any theatrics at all, it might be releasing black balloons into the air.

Giving birth to a regular, standard-issue baby is looked upon as one of those joyous occasions in life that's worthy of high celebration. But giving birth to a crippled baby is something else altogether.

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