Purple Haze Blasting From the Playroom

When I was a teenaged inmate in the early 1970s at the state-operated boarding school for cripples, which I affectionately refer to as the Sam Houston Institute of Technology (SHIT), I resided on the Alpha Beta unit. A unit consisted of two adjacent corridors with rooms that each contained two hospital beds. Each corridor bore the name of a letter of the Greek alphabet. Adjoining the corridors were community bathrooms and the houseparents’ station. The people that did stuff like help us inmates get dressed and out of bed were called our houseparents.

At the far end of each unit was a playroom. The playrooms were large community rooms with a television mounted on the wall, board games and puzzles and crayons in the closet and stuff like that.

Well one day I heard the song Purple Haze blasting from the Alpha Beta playroom. And it was loud as hell, too, as if Hendrix and his band were playing it live. But what it really was was John Robbie, one of the inmates, got his hands on the record Purple Haze and played it full blast on the playroom stereo. I figured one of the houseparents would d go down there and put a stop to it right quick, but none of them ever did.

So John Robbie blasted Purple Haze over and over, sometimes playing it 20 or 30 times in a row it seemed like. And it also seemed like this went on every day for about a month but the houseparents just ignored it and went about their business as if they were all deaf. Rumor had it that everybody was afraid-- even the houseparents—to disturb John Robbie when he was immersed in Purple Haze because he was wild-eyed like a crazy man and he’d throw something at you, like a lamp. People said John Robbie was all hopped upon acid when he was blasting Purple Haze.

I doubted that any of this was true because I never saw any evidence to back it up, such as a shattered lamp in the playroom.  And otherwise John Robbie was a pretty cordial and easygoing guy.

But all this plunged me into a whirlwind of adolescent self-reflection. Maybe that’s what happens to a guy when he gets all hopped up on acid, I thought. So maybe I should get all hopped up on acid, too, because it was so cool how John Robbie got away with blasting Purple Haze. There was no way I could get away with anything like that. If I blasted any of my records, a houseparent would immediately rush down to the playroom and put me on restriction, which was like being on house arrest in my room for a week or so.

Now of course the records I had at the time were infinitely more annoying than Purple Haze, like The Carpenters. (Ouch! I can’t believe I just admitted that!) But that was a moot point because I would never have the guts to blast my records because I was terrified of being restricted.

But John Robbie didn’t seem to give a damn about being restricted while he was blasting Purple Haze. When he blasted Purple Haze, he was taunting the houseparents, daring them to restrict him. Maybe if I got all hopped up on acid I’d overcome my paralyzing fear of being restricted and free myself up to become so cool that even the houseparents would be afraid to mess with me.

But then John Robbie suddenly stopped blasting Purple Haze. My guess is he wore a hole in the record from playing it so much. And the houseparents quietly removed the stereo from the playroom.

Consequently, I never got hopped up on acid, nor did I ever overcome my fear of being restricted. But at least I stopped listening to the Carpenters. 

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Those Fancy-Ass Indy Car Drivers

 

 

How about those fancy-ass Indy car drivers?

I have two things to say about them. First, can we even refer to those things they drive as cars? I suppose they’re cars in the sense that they have four wheels and a steering wheel and an engine. By that loose definition, a go-kart is also a car. So are some lawnmowers. But those Indy cars are more like wheeled rockets than cars. I feel the same way about those wheelchairs that wheelchair racers use. It’s hard for me to think of those things wheelchairs. Yeah, they’re chairs with wheels, but hell, the frame is triangular and when you sit in one your ass is about an inch above the ground. Nobody rides around in one of those unless they’re trying to go 500 miles an hours and win a race. No sane cripple would use a chair like that for a normal activity, like going to a drug store, unless they were some kind of super pretentious show-off.

And here’s the other thing I have to say about those fancy-ass Indy car drivers.  Put them in a motorized wheelchair and then let's see how fancy they drive! They’ll end up capsized in a ditch straight off! It’s especially true if it’s a sip-and-puff chair, where you drive the wheelchair by blowing into a tube. I have one of those sip-and-puff attachments on my chair. I call it my blower. And when I was first trying to figure out how the hell to drive with it, oh man, I wildly zigzagged all over the place like somebody trying not to be shot by a sniper. You should have seen all the gashes and scrapes I put in the walls of the hallway outside my apartment.

 And so I picture a fancy-ass Indy car driver trying to drive my wheelchair using the blower and I laugh my ass off. I wish there was an Indianapolis 500 for blower wheelchairs.

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There's More Than One Way to Get Your Shoes Tied

  

Here I am 64 years old and I don’t know how to tie a shoe. I never learned. It’s not that I never had the opportunity to learn. I remember some occupational therapist trying hard to teach me how to tie a shoe back when I was a teenager. But I never learned.

 It wasn’t that tying shoes was too complex of a concept for me to grasp. I just resisted learning. While the OT was demonstrating the proper shoe-tying technique, I remember saying to myself, “Fuck it, I’ll just get slip-ons.”

I think the reason I refused to learn was that the OT told me that learning to tie my own shoe was an essential component of my “rehabilitation.” In other words, if I was going to have any chance of making it in the big bad world as an adult, I’d have to physically do as many things as possible for myself, such as tying my shoes.

But I guess back then, even though I was just a dumb kid, something inside me didn’t like the idea of independent shoe tying ability being considered a legitimate predictor of my future success. I’d gotten this far without tying my own shoes, with my mother and other people doing it for me. And it seemed a lot more efficient that way. It would probably take about 10 minutes or more for me to put on my own shoes because of my crippledness, whereas it took only about a minute for someone else to do it for me. That would leave me about nine minutes more time and energy each day to spend doing more important things. That’s nearly 55 hours a year. It really adds up.

So I probably decided subconsciously to roll the dice and gamble that I could get by without ever putting on my own shoes. And here I am 50 years later, not having wasted at least 2,750 hours trying to put on my own shoes, which is more than seven years. My shoes are put on my feet by the members of my pit crew, which is what I call the people I hire to come to my home and do stuff like that for me. Their wages are paid through public funds like Medicaid.

I suppose I’m supposed to be embarrassed that I don’t know how to tie a shoe. But actually, I’m kind of proud of it. It makes me a role model, in way. I show future cripplets that there’s more than one way to get your shoes tied, so to speak.

I’m content to go to my grave never knowing how to tie my shoes. In fact, that’s my goal.  

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Beating the System

 

 

I waited alone in the eye doctor’s treatment room. There was an eye chart on a lit-up screen. I figured that the when the eye doctor arrived, she would use that chart to test my vision so I pulled up close enough to it to see all the lines. And then I tried to memorize all the lines, especially the tiny lines at the bottom that I couldn’t read from across the room. That way, when the doctor tested my vision, I’d outsmart her and ace the test!

Pretty stupid, eh? I mean, what’s the point of seeing the doctor if you’re going to pretend like there’s nothing wrong?

But I couldn’t help myself. When I see an opportunity to beat the system, it’s hard for me to resist, even if doing so means shooting myself in the foot. It’s reflex. It’s a cripple thing.

It’s a cripple survival mechanism. If you’re going to live a decent life as a cripple and you’re not rich,  you’re on the lookout constantly for ways to beat the system . Because if you’re a cripple trying to live a decent life and you’re not rich, a lot of systems are rigged against you.  

Take, for example, Medicaid. If you’re a cripple trying to live a decent life and you’re not rich, you often can't get a lot of important stuff you need (like healthcare and wheelchairs and people to come to your home and help you get in and out of bed) unless you’re on Medicaid. But in order to be on Medicaid you have to be really really broke ass. So you’re always trying to hustle up ways to get paid under the table and shit like that.

The eye doctor entered. She flipped a switch and the eye chart on the lit-up screen was replaced by another chart with different letters in a different sequence. It’s a good thing she saved me from myself.

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Love Speech

 

 

Anybody who’s thinking about saying something hateful about cripples on Twitter better think twice. The very first sentence of Twitter’s hateful conduct policy says,  “You may not promote violence against or directly attack or threaten other people on the basis of race, ethnicity, national origin, caste, sexual orientation, gender, gender identity, religious affiliation, age, disability, or serious disease.”

Violating this policy can get you banned from Twitter.

It’s good that Twitter is cracking down on hate speech against cripples. Why not? But now Twitter needs to stop cripples from being brutalized by the opposite of hate speech, which I guess I’ll call love speech. I think cripples have been victimized by love speech a lot more than by hate speech. Like for instance, when cripples are locked up with no possibility of parole in places like nursing homes and state institutions, those responsible for locking us up never try to justify it by saying , “We need to lock these cripples up because they’re all a bunch of predators and thugs!” Nope, instead they say stuff like, “We need to protect these poor, fragile, most vulnerable citizens from harm because we love them so much.”

 Twitter’s hateful conduct policy also says, “We prohibit targeting individuals with repeated slurs, tropes or other content that intends to dehumanize, degrade or reinforce negative or harmful stereotypes about a protected category…We also prohibit the dehumanization of a group of people based on their religion, age, disability, or serious disease.”

So that’s all the more reason Twitter needs to also crack down on love speech because that exactly how love speech works. It dehumanizes. How about all that inspiration porn? Those are those stories in the media where they gush about how courageous a cripple is for doing a simple thing like going to the grocery store. Those stories are feel-good because they make lots of people feel blessed that they’re not crippled. And then there are those stories we see all the fucking time where some cripple rises from their wheelchair and triumphantly walks across the stage to receive their diploma or down the aisle to get married. These stories congratulate cripples for putting so much of their heart and soul into proving to themselves and everyone else that they’re not so abnormal, even if it’s just for a few minutes.

That’s why inspirational cripple stories inspire me to puke. I fear getting mugged by them most of all. But if you engage in cripple love speech on Twitter, you’ll probably be all right.

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The Crippled Guy in the Burger King Commercial

  

I saw a crippled guy in a Burger King television commercial.

It was in a montage of people who are supposed to look like ordinary folks off the street. They were probably actors who auditioned for the role of ordinary person off the street but the point is one of them was crippled. And each of those in the ordinary folks off the street montage said something about what makes a Whopper burger taste so great. The first one sang the praises of the beef patty. The next one gushed about the lettuce, tomato and onion and the third one was a crippled guy who rubbed his hands together enthusiastically and said “and ketchup!”

The crippled guy was only on screen for about two seconds. But it was clear that he was in a wheelchair because he was sitting and you could see the push handle of a wheelchair behind his shoulder.

I’m not sure what this all means but whatever it means I guess it’s good, all things considered. Cripples are always bitching about how we never see authentic cripples on stage and screen. When there are stories about cripples, we’re usually played by uncrippled actors. And a lot of those actors win Oscars for playing a cripple.

But the cripple in the Burger King commercial looked like an actual cripple to me. But then again, who knows. It all went by so fast. I suppose if those were actors playing ordinary folks off the street, whomever cast the commercial could’ve cast an uncrippled guy in the role of crippled ordinary guy off the street and sat him down in a wheelchair. That would suck but in a way it would still be good that Burger King thought it was important that a commercial designed to show how everybody loves the Whopper must include a cripple.

And even if those really were ordinary folks off the street, it’s good that Burger King sought out a crippled ordinary person off the street to contribute to the montage. Or even if they weren’t specifically seeking out a cripple, maybe they couldn’t help but include this cripple in the montage because he said “and ketchup” with such unbridled joy. That’s good, too.

I certainly hope it wasn’t a case where they took an uncrippled ordinary person off the street and had him sit in a wheelchair and say “and ketchup” while rubbing his hands together. But even so, again it would go back to Burger King feeling compelled for whatever reason to make the point that ordinary folks off the street includes cripples.

So at the end of the day, when that cripple said “and ketchup” on a Burger King commercials that millions of people will see, I guess he made the world a little better place for cripples. 

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No Thanks , I'll Sleep in

 

 Apparently there is some kind of injection that’s a treatment for that which makes me and other people like me crippled. It’s not like the Hollywood version of cripple treatments and cures. It doesn’t make us leap up out of wheelchairs and go waterskiing or anything. From what I hear, about all this treatment does is somewhat slow the progression of that which makes us crippled.

I don’t know much about this treatment because I haven’t looked into it much. And I don’t think I’m going to look into it because I have a couple of friends who are trying it out and it doesn’t sound like much fun to me. First of all, this injection must cost a zillion dollars because my friends say they had to fight like hell with their insurance companies to get them to pay for it. And I don’t know about you, but for me there is no endeavor that’s more soul-crushing and makes me feel more like I’ve had precious hours of life stolen from me than fighting like hell with my insurance company. That’s why everybody hates insurance companies.

My friends also tell me that the injection goes directly into their spinal cords. Whaaaaat? Need I say more about that?

But to me, the most intolerable deal-breaking aspect of it all is that my friends have to be at their doctor’s office bright and early to receive their injection, like about 8 a.m. So that means that on Injection Day, they have to get up around 4 a.m. I don’t know why it has to be that way. Why can’t they get injected in the middle of the afternoon? It’s almost like the medical professionals have to make sure that getting treated and/or cured entails some element of suffering for us. Otherwise they’re letting us off the hook too easy.

So, to recap, if I want to get the treatment I’d have to fight like hell with my Insurance company in order to receive an injection directly into my spine. And worst of all, I’d have to get up at 4 a.m!

I know what will happen. I’ll hear the alarm at 4 a.m. and I’ll say fuck it. I don’t even think I’d be motivated enough to get up even if the treatment might make me leap up out of my wheelchair and go waterskiing. I’ve lived this long without waterskiing. At this point in my life, I’d rather sleep in. That’s about all that’s left on my bucket list. I don't know if that's good or bad, but that's what it is.

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