Thursday, September 29, 2022

Smart Ass Cripple's Disease

 

I need to hurry up and  become super famous. I’m talking about that rare Lou Gehrig level of fame.

It’s a daunting task but I think I can do it. I’m certainly motivated enough to try. Because there’s one  glaringly unachieved goal remaining on my bucket list. I want to be famous enough to have a disease named after me.

And I want to do it the hard way, like Lou Gehrig did. I feel like any old punk can take the shortcut by discovering a disease and then having it named after them, like Alzheimer or Parkinson. That seems like cheating.

But when a disease is named after you just because you have it, now that’s famous! But it has to be a certain kind of famous. Look at Michael J. Fox, for instance. He has Parkinson’s, but they still call it Parkinson’s. I’ve never heard about any groundswell to rename it Michael J. Fox’s disease. I guess he's not famous in the right way.

And what about Stephen Hawking ? He’s just as famous as Lou Gehrig, but nobody calls what made him crippled Stephen Hawking’s Disease. Maybe it’s a matter of first come first serve and  Lou Gehrig beat him to it. Or maybe you have to have the kind of fame that is free from all taint of infamy. Some people might consider Stephen Hawking to be a bit bawdy. Maybe someday something will happen  to sully Lou Gehrig’s good name. Like maybe it’ll come out that his hobby was kicking puppies. Then maybe he’ll be stripped of his disease and the title will be awarded to Stephen Hawking.

But I’m at the stage of life where a man thinks a lot about his legacy, and I really want mine to include having that which has made me crippled renamed Smart Ass Cripple’s Disease. I believe I’m crippled because of something called Spinal Muscular Atrophy aka SMA. I’ve never been officially diagnosed because it really doesn’t matter to me.  Knowing what makes me crippled doesn’t make me any less crippled.

So I’m halfway toward achieving my goal. I already have a disease. Now I just have to figure out how to get famous enough to have SMA renamed Smart Ass Cripple’s Disease. But that probably won’t ever happen. I’m too bawdy.

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Wednesday, September 21, 2022

Polio Fucking Awareness Month

 This month is Polio Fucking Awareness Month, as declared by me. I just think that considering how things have been going lately, we could all use a lot more fucking awareness about polio.

I mean, back about 60 years ago, I attended a public elementary school for cripples that was very exclusive. By that I mean that the kids who were students there were all very excluded from our neighborhood public schools.

We called some of our fellow students polios because that’s why they were crippled. They caught the polio virus.

The polios were all older than me because a few years earlier a polio vaccine was developed so no one caught polio anymore. And getting vaccinated was easy as hell. When I got mine, I just ate a sugar cube with a red spot on it. It was ridiculous. I couldn’t believe that’s all I had to do to keep from ever catching fucking polio.

I guess people don’t eat sugar cubes anymore, judging by the stuff I’ve been reading lately. I guess if you want to get vaccinated against fucking polio, you have to get a shot in the arm. But so fucking what? That sure beats the hell out of catching fucking polio.

But now I see where fucking polio is making a comeback. People in New York are catching fucking polio.

I can’t believe it! And it’s still the case that if you don’t ever want to get fucking polio, all you have to do is take the goddam vaccine!

I don’t know what the hell is going on. I hope this isn’t yet another example of the kind of shit that happens when there are a lot of douche bags running around who think not being vaccinated against anything makes them hip and cool, when all it does is put them in the asshole vanguard. And they think it’s their inalienable Constitutional right to cough in everyone else’s face like Typhoid Fucking Mary, free from government interference. I swear if anything is going to wipe out the whole human race it’ll be goddam libertarianism!

Maybe these morons will help polio make such a roaring comeback that a new strain will develop that will smash through the vaccination wall and send us all back to square fucking one. Then they’ll be real proud of themselves!

Okay but to be fair (which I really hate to do), the stuff I’ve been reading lately also says that some people don’t know whether or not they’re vaccinated against polio.

Fair enough. If you don’t remember eating a sugar cube or getting a shot in the arm, then go find out if you’ve ever received the polio vaccine. If you haven’t, then get it. Jesus Christ, I can’t believe this is even up for debate!

I hope I’ve raised a little fucking awareness about fucking polio. Thank you for your time.

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Monday, September 12, 2022

A New Labor Day Tradition

 

 I had a mighty fine Labor Day. Rahnee and I took the dogs to the park and we also took along some snacks. The weather was overcast and a bit cool but still mostly summery.

And another mighty fine thing happened that day. I’ve developed a new Labor Day tradition. I try to make it a point every Labor Day weekend to ask someone under age 30 if they’ve ever heard of the Jerry Lewis Telethon.

I’m fortunate that most of the people I’ve hired to come into my home and get me out of bed and such are under age 30. So, I’m surrounded by people from that demographic more than most old farts like me.

And I’m delighted to report that lately they’ve all said that they’ve never heard of either Jerry Lewis or the telethon.

And I feel great satisfaction when I hear that because there was a time not long ago when the Jerry Lewis Telethon was synonymous with Labor Day weekend. 

(Warning: I’m about to briefly explain who Jerry Lewis and the telethon were. If you don’t know who they were it’s better that you never do. So, skip down a few paragraphs.) Jerry Lewis was a comedian from the 1940s whose signature schtick was doing an impression of the lamest stereotype of a spaz.

Somewhere along the line, Lewis got the idea that he wanted his legacy to be as a great humanitarian who raised millions of dollars for the Muscular Dystrophy Association. Thus, he engaged in shameless pandering by hosting a 21-hour show every Labor Day weekend called the Jerry Lewis Telethon. In between cheesy, Vegasy acts, Lewis would plead for viewers to please call the number on the screen and pledge a donation to the MDA.

You’d think that would make people with muscular dystrophy, like me, very happy. But a lot of us were pissed off by it all. There were tons of reasons why the telethon reeked but suffice it to say that a big reason was that Lewis’ depiction of life as a cripple was as insultingly shallow as his spaz schtick. The telethon took the laziest approach of trying to make its audience believe that the typical cripple is as sad but extraordinarily brave perpetual child who hates being crippled and wants nothing else in life except to be cured. And we all worship Lewis and the MDA because they are our hope for being cured. But they can’t do it without the generous donations of people like you.

The telethon referred to people with muscular dystrophy as Jerry’s Kids. So, some of us formed a group called Jerry’s Orphans and on Labor Day weekends we protested around the country against the telethon. We got a lot of media attention and Lewis reacted with bitter hostility. I’m proud to say that MDA threatened to sue me if I didn’t shut up. I didn’t and they didn’t.

The Jerry Lewis Telethon is so long gone that younger generations don’t even know it ever existed. So, I guess Jerry’s Orphans won.

As we sat in the park with the dogs eating snacks, I said to Rahnee, “This sure beats protesting.”

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Wednesday, August 31, 2022

The Cripple Legacy of Rudolph the Red- Nosed Reindeer

 

Whenever I hear the song Rudolph the Red-Nosed Reindeer, I feel very conflicted. I never know what to make of Rudolph’s legacy as a cripple

Afterall, as the story goes, RRR was ostracized because he was considered to be a defective freak. All of the other reindeer used to laugh and call him names. They never let poor Rudolph join in any reindeer games. Every cripple certainly knows how that feels.

But RRR refused to assimilate. He continued being the freak that he was and eventually he got the last laugh on that foggy Christmas Eve when Santa called upon him to save the day.

So  should I hold RRR up as a role model for little criplets? Is he an example of a proud cripple who took the risk of letting their freak flag fly? Or was he just another Tiny Tim?

This is the problem with the song. It doesn’t go into how RRR felt about being laughed at and called names and banished from the reindeer games. Maybe he said to the other reindeer, “Fuck you guys and your stupid reindeer games!” But maybe he sulked in his stall and watched longingly through the window, desperately wishing he wasn’t a freak so the other reindeer would accept him as their peer.

 The song needs another stanza that delves into RRR’s psyche. But the songwriter leaves all this stuff open to interpretation.

My guess is that if RRR could have assimilated, he definitely would have. If someone had offered him a chance to have his red nose surgically removed, he would have jumped all over it .

That would have drastically altered the trajectory of the song. On that foggy Christmas Eve, Santa would have been screwed and the sleigh would have been grounded . Either that or that or it would have crashed into a  mountainside near Buenos Aires. Either way, Christmas would be cancelled.

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Monday, August 22, 2022

On the Wussy Trail

 

I’ve seen motorized wheelchairs with tank tracks for tires. Apparently, somebody is manufacturing and marketing such a device.

This makes me think of two things:

1.      These wheelchair/tank hybrids  don’t seem very practical in the real world.  I’ve only seen cripples actually riding around in these things in sales promotional videos. Never in daily life. The tank tracks turn a wheelchair into a rugged, all-terrain vehicle. But hell, they also make it so wide that I couldn’t even get it through the front door of my home.

It’s intended for use only in the great outdoors. It gives cripples access to areas they can’t get to in an ordinary wheelchair. It empowers them to do stuff like go deer hunting

Now I like the great outdoors as much as any cripple. And I ‘m aware (sometimes painfully so) that my participation is often limited to the wussy trails, which are those trails in state parks and places like that which are wheelchair accessible. That means that they are probably paved and flat and short. The degree of difficulty is zero. Walking hikers look at them and guffaw.

But even if this indignation inspired me to get a wheelchair with tank tracks, I don’t know how I would transport it. It sure as hell won’t fit in my cripple van. So, I’d have to rent a U-Haul or something to take it anywhere.

2.     Have fun getting Medicaid to pay for it.   The wheelchair I’m riding around in cost more than $20,000. And it has regular tires. So, you figure a wheelchair with tank tracks must cost at least that much. And Medicaid makes you fight like hell if you want them to pay for a plain old wheelchair. First, they’ll approve you for a unicycle and then you have to get your doctor to write a long Dear Medicaid letter detailing why the other three wheels are “medically necessary.” And then Medicaid still turns you down again and again and makes you file about 15 appeals.

So, Medicaid sure as hell isn’t going to pay a cent for a wheelchair with tank tracks, even if you can find a doctor who will write a long Dear Medicaid letter detailing why tank tracks are “medically necessary."

So, anyone who buys one of those wheelchairs with tank tracks has to want to go deer hunting bad enough to cough up about $20,000 of their own money

I’ll stick to the wussy trail.  


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Tuesday, August 9, 2022

Professional Masochist

 I never hail Uber or those rideshare services. Because I know what’s gonna happen. Chances are great that I won’t be able to get a ride because there aren’t any cripple accessible vehicles on the street. And that’s because Uber drivers use their own private vehicles and most people’s own private vehicles aren’t cripple accessible.

And I don’t know about you but for me, hailing a ride isn’t a theoretical exercise. When I decide I need to go someplace, it’s because I need to go someplace. Why would I hail a ride to get me there if I didn’t care whether or not they show up?

And so I don’t bother to even consider Uber because it seems masochistic. I feel it’s as pointless as sitting on a buzzsaw. I know what gonna happen so why not just spare myself the pain?

But now I’m thinking maybe I should rethink that strategy. It seems there actually are some cripples who actually hailed Uber and actually got picked up. I know such people exist because the U.S.  Department of Justice sued Uber on behalf of these cripples. DoJ sued Uber because after these cripples got picked up they were charged extra because they took more than two minutes to get loaded into the vehicle. DoJ said that was a violation of the Americans with Disabilities Act.

Apparently Uber hits riders with an extra fee if they keep a driver waiting more than two minutes. If so, if I ever managed to somehow land Uber rides then I’d probably get hit with that fee every time. I don’t just open the car door and hop in like your average vert (which is what I call people who walk because it’s short for vertical.) If it’s a cripple accessible van, the driver has to get out and come around and deploy the wheelchair ramp. Then I roll in and maneuver into place. Then the driver has to strap down my wheelchair so I don’t ricochet around the van like a pinball when they hit the brakes. It’s gonna take at least two minutes to do all that, if we’re lucky.

Well, DoJ recently announced a settlement of the lawsuit, in which Uber agreed to pay $1.8 million to more than a thousand cripples who reported being stung by those fees.

I’m jealous. If I’d have just gone out there an taken my lumps instead of avoiding Uber altogether, some of that cash could’ve been mine. But that’s what I get for not trying to go places where I'm not welcome.

But maybe it’s not too late for me. Maybe I can become a professional masochist.  I’ll take my shot, even when I know damn well I’ll be rebuffed, and then I'll sue the hell out of people. It’s probably a painful way to make a living, but what isn’t?

Maybe I should start today by trying to hail an Uber. But I’m afraid that, just my luck, everything will go smooth and I’ll get to where I’m going. 


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Thursday, July 28, 2022

Runaway Cripple

 

When my brother, Steve, was about five years old, he told mom he wanted to run away from home.

So, mom helped him prepare for the journey. She got him dressed appropriately and made him some sandwiches for the road and packed them in a brown paper lunch bag. Mom then rolled Steve in his wheelchair out onto the front sidewalk and told him to tell passersby that he was running away from home and ask them if they would take him home to live with them. Mom said she was going back in the house, but she would look out periodically to see if he was still there and if he still was she’d come out and check on him.

Well, fortunately, there were no passersby. I figure that’s what must’ve happened because otherwise this thing probably would’ve gotten all blown out of proportion. Because this was 1952 or so and if anybody would’ve come across an abandoned crippled kid saying to them, “Please take me home,” they probably would’ve freaked out and called the authorities and somebody from the state might’ve come and taken my brother away from my mother because she would’ve been seen as some kind of negligent shrew or something.

But just the opposite was true. First off, I’m sure the weather was conducive to running away from home. I’m sure my mother never would’ve set my brother out there on the sidewalk alone if there was a blizzard going on.

And second, I really doubt my brother was ever technically alone. I’m sure my mother was in the house watching through the window the whole time.

What she did was the opposite of negligent. It was actually quite brilliant. My mother knew a few things about raising crippled kids. She raised three of us. And she handled it pretty much the same way she handled it when my brother wanted to run away from home. She didn’t try to stop us from doing all the stuff kids want to do. She let us go out and do dumb shit and screw up and learn from it. She knew we could take it.

After a little while, mom went outside and said to Steve, “Oh, are you still here? Would you like to come back in the house?” Steve said yes.

 Mom and Steve went back in the house and a little was that. 

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Wednesday, July 20, 2022

Another Thing I Wouldn't Know if I Lived in a Stinkin' Nursing Home

 I’m sure glad I don’t live in Korea. Because if I did, everyone would be all bummed out on my birthday.

And I wouldn’t know this if I lived in a stinkin’ nursing home. Because a guy from South Korea used to be a member of my pit crew, which is what I call the group of people I’ve hired to come into my home every day to help me do stuff like get dressed and out of bed, take a crap, etc. When I mentioned my birthday, this guy told me that it is the anniversary of the beginning of the Korean War.

And I never would have met this guy if I was in a stinkin’ nursing home because I wouldn’t have a pit crew. I wouldn’t need one because the nursing home would send in people to do all the stuff that my pit crew does for me. And they’d be strangers dressed in surgical scrubs and they’d come get me up at whatever time was most convenient for them because they’d probably also be getting about a dozen other people up. And I’d probably have to go to bed whenever they were ready to put me to bed even if it was 6 p.m. and the sun was still up because they’d probably also have to put about a dozen other people to bed. And I ‘d have to eat whatever the gruel de jour was whenever they were ready to help me eat it. And I wouldn’t have a damn thing to say about any of it.

So I’m glad I got to meet this guy from Korea so now at least I’ll know what to expect if I’m ever there on my birthday.  Otherwise I might’ve been blindsided. That would really suck. It would be like this other guy I know whose eighth birthday party was ruined because it happened on the same day that John F. Kennedy went out and got himself assassinated.

It’s probably the same way for people in the U.S. whose birthday is September 11. That’s a fucked-up day in Chile, too, because on September 11, 1973, their elected president, Salvador Allende, was killed and a military junta took over. Allende was replaced by General Augusto Pinochet, who was one of the infamous brutal assholes of the 20th Century, up there with Hitler, Stalin and Pol Pot. And the administration of U.S. President Richard Nixon (another brutal asshole) helped plan and conduct the coup.

But anyway,  I’m glad I don’t live in Korea because I’m usually a little bit bummed on my birthday as it is. Because I always try to take the day off and not do any work and try to just do fun stuff. But everyone else is going around like it’s just another day, except the people who are doing fun stuff with me. If I were president, I’d make my birthday a national holiday so that everyone could just do fun stuff. Everyone would have the day off, except bartenders. On my birthday, bartenders are the first responders. 


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Sunday, July 10, 2022

Mama Almost Done me Wrong


I love my mother to pieces. Not only did she give me my life, but she saved it many times along the way.

But mama almost done me wrong, in a real bad way. She did it out of love, but nevertheless, she almost done me wrong.

Mama wanted me to be an accountant. She was fooled back when I was a little baseball freak and I’d just discovered the joy of learning how to calculate battling averages and earned run averages. She saw the pages on which I did numerous calculations and I guess to her it looked like some elaborate equation on a blackboard at MIT.

So my mother said to me, “You have a way with numbers,” and she suggested I become an accountant. My mother was wise. She knew that being a crippled adult was going to be expensive for me. She knew that someday I'd probably have to pay for people to do the stuff she was doing for me for free, like dragging my crippled ass in and out of bed. So I’d better have a damn good job.

I was only about 10 years old at the time so I was too young to have thought much about what I would do when mom couldn’t do all the things she did anymore. But I wasn’t too young to feel that I’d rather be drawn and quartered by horses and have my eyes poked out than become an accountant.

And as I’ve gotten older, that aversion has grown stronger. I hate keeping track of my own money, let alone anyone else’s. I don’t care how much money they want to pay me to keep track of theirs.

And even if I had been capable of rationally weighing my future options at age 10, it probably wouldn’t have made any difference. If I would have considered the proposition that I could well end up broke and homeless with no one to drag my crippled ass in and out of bed if I didn’t become an accountant, I probably still would’ve decided to take my chances and hope for the best.

And that’s what I did. And I’ve gotten by pretty good so far. Mama was right that being a crippled adult would be very expensive. But the answer was the opposite of becoming an accountant. The answer was socialism. Yes, over about four decades now I’ve had to pay a bunch of people to do all the stuff for me that mama used to do.  But the wages of the people I hire are paid by public funds through a state program. I just submit to a state agency a record of the hours my workers spent dragging my crippled ass in and out of bed and doing all the stuff for me that mama used to do, and the state sends them a payment every two weeks.

And here I am today, still going. And I’ve managed to do it without becoming an accountant. I’m quite proud of that. 


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