The First Time Greg Heard About Cerebral Palsy

The summer of 1962 in a working class neighborhood on the south side of Chicago. Greg is age 8. He’s heading for the Tastee Freeze with Tommy the Polish kid.

They come across a hubbub. A buzzing crowd. Fire trucks. Tommy and Greg wiggle through to the front of the crowd. They see the front end of a car perched atop a dislodged fire hydrant. The firemen have turned off the geyser but a pond has formed around the hydrant. The pond gurgles and swirls like a whirlpool. Fireman divers dive in.

A diver surfaces with a saturated pair of jeans about the same size as Greg’s jeans.

“It’s Teddy Birch!” a voice says.

“Who’s Teddy Birch?” Greg asks Tommy.

“The cerebral palsy kid,” says Tommy.

Cereal bowl what, thought Greg?

A diver surfaces cradling something in his arms. Greg can see a pair of limp legs. A fireman on the street throws a tarp over the bundle in the diver’s arm. The diver passes the sagging bundle up to the fireman on the street, who whisks the bundle into an ambulance.

“Poor Teddy Birch,” somebody says. Somebody says the geyser eroded the ground around the hydrant. A sinkhole opened. The kids ran but Teddy Birch was too slow to get away. He’s got cerebral palsy, after all. Teddy Birch got swallowed.

Cerebral palsy must be one of those diseases that make you crippled, Greg surmised. He didn’t know for sure because there were no crippled children in his church or school. The nuns talked about crippled children a lot, but he never saw a real one.

Cerebral palsy must be like that other disease that makes you crippled: multiple sclerosis. His mother told him about multiple sclerosis in one of her many scary stories which she always ends with, “And let that be a lesson to you.”

Greg and mom were in the car at a railroad crossing. Mother said one dark and terrible night at this very crossing, a car got stuck on the tracks. Two men were in the car. A train was coming. One man escaped but the other man couldn’t escape and he was killed when the train crushed the car. That man had multiple sclerosis.

“And let that be a lesson to you.”

But what does it all mean, Greg wondered? Why couldn’t the man with multiple sclerosis escape? Was multiple sclerosis a disease that makes a person paralyzed with fear when something terrible is about to happen, so they can’t run away? Is that what the nuns meant when they said some crippled people are paralyzed? Poor Teddy Birch. When he saw the sinkhole opening, did he get paralyzed too? Is that why he couldn’t run away?

Or was the man with multiple sclerosis just slow, like Teddy Birch? Is that why he couldn’t run away? Was that why the nuns sometimes referred to some crippled children as slow? But weren’t the slow children the just children who were mentally crippled?

Or were all crippled people slow, even the adults? So when you see those signs that say SLOW CHILDREN CROSSING, is that how you know where all the crippled people live?

What does it all mean?

It’s All Over But the Bingo

Once again Smart Ass Cripple will offer up an embarrassing true account of one of his many follies so that you, dear reader, can learn a valuable life lesson.

You’re welcome.

Today’s lecture is on the importance of advance directives. What would you do if you were suddenly in a position where you were unable to make medical decisions for yourself? It’s vitally important that you think about this right away, while you still can. Write down specific instructions in an advance directive for your loved ones who will be your surrogate decision makers to follow. This will save everyone a lot of anguish.

Believe me, I know. I made a well-meaning but profoundly ill-advised medical decision on behalf of my aunt and now she must live with the consequences. Two years ago my aunt was hospitalized due to a sudden, unexplained but temporary wave of delirium. Within two months she was back home with her wits restored intact. But she remembered little of what went on those two months. As I pieced it all together for her- - the tests, the treatments, the surgery-- I mentioned that one day when she was in the nursing home for rehab, she played bingo. She looked at me with horror. “Bingo? ME?”

I’ll never forget her searing look of betrayal. I knew right then I’d made a terrible mistake. I pleaded my case. I explained to her that when they announced at the nursing home that it was bingo time, she was quite enthused to play. So I sat beside her as she played with competitive intensity.

But I should have known better than to go along with her. I should have remembered the couple times Rahnee and I pointed out the senior center near my aunt’s home and encouraged her to socialize there. My aunt adamantly scrunched up her nose. “No way!” I can see now that her strong reaction was probably because there’s a big BINGO sign in front of the senior center. To her, bingo is the national pastime of the end stage. They’re sweeping the floor around you and putting the chairs upside down on the tables. They’re turning off the lights. It’s all over but the bingo.

I should have insisted to all the medical staff working with my aunt that she be placed under a strict No Bingo Order. I should have demanded that NBO be written on the front of her chart in bold red. Then this terrible mistake would never have happened. If only she had spelled this all out in an advance directive.

My aunt still grapples with the magnitude of the sobering reality that she lost such control of her faculties that she actually played bingo. She prays it will never happen again.

My aunt forgives me for my poor judgment, but I still carry the guilt. When I decided to let her play bingo, I just wanted her to enjoy life however she could. But my agenda was selfish. I wasn’t considering her quality of life. How much can a person truly enjoy life when they’ve lost their dignity?

Field Rations

Last week for lunch three days in a row I ate a McDonald’s hamburger. Yep, just the standard single patty kind-- a coarse, dry burger smashed deep within a cottony bun. You gnaw your way through, hoping with this bite maybe just maybe you’ll experience a brief surprise, like a taste of condiment or the tart snap of a pickle.

I hate fast food burgers. About the only time I eat them is when I break down and have a couple White Castle double cheeseburgers. But that’s soon followed by deep, self-loathing remorse. White Castles are what you eat at 3 a.m. when the bars are closed and you’ve been on a whiskey binge. When you wake the next day, you see an empty fifth and an empty White Castle bag. You’re in an apartment you’ve never seen before. You’re naked in bed next to a sleeping naked person you’ve never seen before. And you say to yourself, “Oh my God! I can’t believe I ate at White Castle!”

But I ate three McDonald’s hamburgers because these are tough times and tough times require extraordinary sacrifices. I was on a national action with ADAPT, which means about 400 people, most of us in wheelchairs, gather in D.C. and try to harass the hell out of policymakers who are trying to screw us over. And a single burger with a cold clump of fries is our ADAPT field ration. We’re blocking an intersection or blocking the doors of a building or blocking the gates of the White House and our comrades, whose job it is to find the closest McDonald’s and order 400 burgers, come around carrying brown boxes on their shoulders. Lunchtime.

Plain burgers. Don’t ask for no stinkin’ cheeseburger or foo foo shamrock shake. This is grassroots cuisine. That’s how ADAPT is. You can tell us by our signs. I was headed for one of our Chicago protests once when I saw there was already a group marching at the protest site. But their signs were professionally printed, so I knew it wasn’t us. We use poster boards and markers. And some of our signs are worn and battered because, sadly, they don’t go out of date. STOP THE BUDGET CUTS is a classic sign that’s as useful today as it was 20 years ago. I’D RATHER GO TO JAIL THAN DIE IN A NURSING HOME is another sign that can be used over and over and over again.

Our main target this time was Wisconsin Congressman Paul Ryan. He’s the one pushing the republican budget plan that guts the living crap out of Medicaid. Nearly every cripple in America has needed or will need some assistance or equipment paid for by Medicaid. Ryan’s kind wants to return America to the heavenly 1950s, when grass was green and birdies sang and cripples were invisible. There’s a 1950s theme restaurant, Ed Debevic’s, in Chicago and when I went there they had the ‘50s motif down to the last detail. There was a big flight of stairs at the front entrance and I had to enter through the kitchen.

So for a chance to give a guy like Ryan an elbow to the chops I’ll roll over hot coals and eat McDonald’s hamburgers. On Monday, we crowded in the center of the rotunda of the Cannon House Office Building, where there is a glorious echo. We chanted for Ryan to come out and face the potential carnage, until 91 of us were arrested. On Tuesday we occupied his office and overflowed down the hall, until 10 more arrested.

Confronting the bad guys is a fine way to relieve stress and anxiety. And it’s a helluva lot cheaper and more fun than seeing a shrink.

Ryan may not like us much. But as Harry Truman said, if you can’t stand the heat, don’t paint a bull’s-eye on your butt.

And we don’t need Ryan's love and affection. The guy who owns the Capitol Hill McDonald’s loves us to death.

Let Them Eat Royal Wedding Cake

You’ll be happy to know that Smart Ass Cripple turned down his invitation to the Royal wedding. I did so proactively and preemptively. When I heard the royal news of the royal engagement I wrote the royal family and told them I would not be able to attend so don’t waste royal postage sending me a royal invitation. So they didn’t.

I said I was royally sorry. I said I had a previous commitment. I can’t remember whether I said it was jury duty or a root canal. It’s not that I don’t admire the royal family. I aspire to be just like them. Who wouldn’t want to live a life where you can sit on your ass all day in a palace while servants bring you caviar, paid for by the taxpayers? But I know being royalty is not all wall-to-wall bliss. Their spectrum of acceptable behaviors is so limited that they can’t even fart without it being turned into a scandal. I’m sure they often envy the freedom of those of us whose farts are far too common to warrant publicly scrutiny.

I declined my invitation because I was royally intimidated by the prospect of buying a royal wedding gift. These are people who have sapphire-encrusted nose hair trimmers. My budget for a royal wedding gift would be about 25 British pounds. So the entertainment at the reception was sure to include me being knighted with the title of royal cheap ass.

But then the royal couple announced that in lieu of gifts they wanted donations sent to a list of charities selected by them. They set up a website to accept contributions. I was royally pissed. What an idiot I was to turn down my invitation. This charity bit would have given me the perfect cover for showing up empty-handed. And since contributions could be given anonymously on the website, nobody would ever know that I was the cheap ass who only contributed 25 British pounds.

But the charity I want to give to wasn’t on the list, probably because it doesn’t yet exist. But it will soon and it will be called something like the Victims of the Purge of the Independent Living Fund. As an austerity measure, the British government announced a few months back that it will be phasing out the Independent Living Fund by 2015. About 21,000 significantly crippled up English people receive about £300 a week from the £359-million fund, which repients use to pay people to help them in their homes so they can stay out of institutions.

So pretty soon they’ll be among the growing ranks of charity cases scrambling for the royal table scraps. Cripples who are charity cases have an extremely limited spectrum of acceptable behaviors too. The competition is stiff. You’re up against heavyweight heart wrenchers, like starving children and elephants being poached for their tusks. So you’d better be all sunshine all the time, like the Special Olympics, or people will give their money to more deserving victims. Being a crippled charity case is as stifling as being royalty, but without the palace and servants and caviar to ease the pain.

As soon as the Victims of the Purge of the Independent Living Fund is established, I’ll donate my £25. Then we’ll only have £358,999,975 million more to raise. It will be up to you and me to give because I doubt the British public will be able to help much. They’re pretty tapped out after paying for a royal wedding.

The royal family has their plate full too, what with so many exemplary victims vying for their charity. But maybe they can find it in their hearts to send these victims some leftover wedding cake.

Smart Ass Cripple’s Advice to Youth

If anybody out there is looking for a commencement speaker, it’s not too late to hire Smart Ass Cripple. Perhaps you got stiffed at the last minute by Condoleezza Rice. Don’t worry! Smart ass Cripple is ready, willing and able to step right in!

Smart Ass Cripple delivers an inspirational message that resonates especially well with young adolescents, those who are at the age where they might be considering smoking marijuana for the very first time. Smart Ass Cripple has been there and can speak to them with sobering frankness about the pitfalls of the cavalier use of marijuana. Before they decide to take their first hit, I would implore them not to do something they’ll live to regret. Don’t make the same mistake that I did. DO NOT get stoned for the first time at Jerry Lewis summer camp.

I was 14 years old. I was a camper at Jerry Lewis summer camp. My 24/7 attendant assigned to me for my week at camp was a hitchhiking hippie. He offered me my first joint. So we slipped away in the dark of evening down to the secluded camp parking lot. And there we got stoned. And oh sweet Jesus, that pot was some wicked psychotic shit, or so it seemed to a 14 year old.

I was instantly paranoid. I imagined I saw men wearing bright orange vests, like highway construction workers, up in the trees and they were coming down to arrest me. I should’ve known that being at Jerry Lewis summer camp would be a big time buzzkill. It was way too uptight of an environment to be an appropriate setting for anyone’s first hit. We were a bunch of frail cripples out in the woods and the Muscular Dystrophy Association people who ran the camp were always terrified we might die if a butterfly landed on our noses or something. So to ensure our safety, they practically wrapped us in bubble wrap and followed us around with defibrillators. Curfews we strict.

I told my attendant I wanted to flee the parking lot and head for the Fun Lodge. The Fun Lodge was the lodge where we were sent when it was time to have fun, according to the schedule. There were board games in the Fun Lodge, art supplies like Elmer’s glue and glitter. But the lights inside the Fun Lodge were blindingly bright when I was stoned. They never seemed that bright to me before. And everybody in the Fun Lodge was looking at me! I just knew they were! They all could tell I was stoned!

I told my attendant I wanted to flee back to the cabin. Then I told him to put me in bed and I laid there hiding with the covers over my head until morning.

As you can see, my first time was a huge downer. It’s a miracle that I ever smoked pot again.

And so I offer myself as a living example of the sad consequences of willy nilly pot smoking. Before you get stoned, especially for the first time, you should take a much more deliberate approach than I did and consider the finer details, such as where you are and whom you’re with. Place yourself in a situation that minimizes your potential for feeling paranoid and guilty. This is especially important to do if you, like me, were raised a Catholic.

Because if you’re not going to enjoy getting stoned, then what’s the point?

Crippled Woman Dies in Tragic Saganaki Accident

That might have been the headline the day after the day my sister almost met her untimely demise.

We were in the crowded dining room of a Greek restaurant. The people at the table behind my sister ordered saganaki. Saganaki is a hunk of cheese flambé. The server holds the plate high like an offering to the Gods, douses the cheese with a shot of something then lights it with a lighter. And when the cheese combusts everyone celebrates by shouting OPAH!

First my sister heard the familiar hiss and sizzle of saganaki getting doused. Her face filled with fear. Then she heard OPAH right behind her and she cried out “Nnnoooooooooo!” Her husband bolted up from his seat, as if he was going to tackle the poor server. I wondered what the hell they were so worked up about and then I remembered my sister had an oxygen tank on the back of her wheelchair, right below the flaming saganaki.

No explosion ensued. All survived. But had all the matter that composes my sister been transformed at that instant into a plume of smoke, leaving behind only an empty, smoldering wheelchair, this story would have been forever enshrined in that genre of cripple folklore I call true bullshit. Every cripple has true bullshit stories about themselves or some other cripple. They always swear to God it’s true. Everybody else thinks it’s bullshit, but no one knows for sure. With all the weird shit that happens to cripples, anything might be true.

Here’s a true bullshit story told to me by Mat Fraser of England. He says there was this armless girl in Britain who was given these miracle prosthetic arms that could move and gesticulate just like for real. The arms were powered by gas, stored in a tank strapped on her back. Therein was the fatal design flaw. Every day the active girl ran out of gas, and her arms froze in whatever position they were in at that moment. This was particularly embarrassing one particular day at her Catholic school when she spread and raised her arms and they froze in the crucifixion position.

Mat swears to God it’s true. Anybody else would think it’s total bullshit. But then again, maybe not. Mat was born with short forearms and no thumbs, so he knows all about the wild Rube Goldberg prosthetics that have been foisted upon people like him in the name of making them more functional, aesthetically pleasing humans. A shiny new pair of robot arms with hands so realistic that the palms can be programmed to sweat. The arms are powered by an earth-orbiting satellite. But they hang from the shoulders like an albatross and soon end up in the trash because compared to how smoothly you’ve learned to function with your God-given crippled up arms, you feel like you’re in a straightjacket. So for cripples who live in that screwy universe, the concept of gas-powered arms is completely believable.

Here’s one more true bullshit story. It’s the story of how Randy became a quadriplegic. Lilltl Rock, Arkansas, 1992. “We were out drinking,” Randy says. Almost every crazy How-I became-a -cripple story begins with those words. It was about 3 a.m. The bars were closed. Randy and his two female drinking buddies stopped at a convenience store and bought more beer, a pack of hot dogs and buns. They were going to go back to one of the women’s houses, start a campfire in the yard and roast the hot dogs. But they didn’t have firewood.

Randy got a bright idea. It was the height of the presidential campaign. There were campaign lawn signs all over. “They were all stuck in the ground with wooden stakes.” So Randy figured they could uproot a bunch of campaign signs and steal the stakes to use as firewood. “And we decided to take down only the Bush/Quayle signs because we didn’t want to see any of those around anyway.”

So to increase the odds of finding Bush/Quayle signs, they headed for a swanky neighborhood. The first couple uprootings went according to plan. But then, a man emerged from a swanky house with a shotgun. Randy and the women ran. As Randy dived into the car, a bullet ripped into his back.

And that’s how Randy became crippled. He swears to God it’s all true. He says he still has part of a bullet in his back to prove it.

Then again, it could be bullshit. But maybe not.

A Day in the Fake Tragic Life of Dick Cheney

Dick Cheney sat alone in a room, his pants down to his ankles, watching TV. There was a metal ring secured snug around his penis and the ring had sensors that recorded his level of arousal.

This was a recent day on the job for Dick Cheney (Smart Ass Cripple Alias), whose life would be among the most tragic you ever did see if it wasn’t all bullshit. At times in his life Dick Cheney has had fibromyalgia, diabetes and vision poor enough to require LASIK eye surgery. He’s been a “distressed homosexual” and the parent of a child with autism. Pretty strange stuff, but none of it’s true. But sometimes Dick Cheney has to pretend like he’s all this and more in order to make money. Everybody’s got to pay the rent, right?

Dick Cheney is one of my crew of assistants. My assistants are paid squat by the state. (I used to say they aren’t paid squat, but they got a raise recently, which officially brought them up to the wage range most economists would categorize as squat.) Therefore they need second jobs. But Dick Cheney is a self-described “aberrant character.” He’s heavily tattooed. One of his forearms is tattooed solid black. He sometimes wears skirts and tights. His earlobes hang low, pierced with gaping holes about the size of a paper clip, into which he inserts various ornamental rings.

So Dick Cheney doesn’t make a good first impression in the traditional employment marketplace. So for his extra income, he trolls through focus group ads. He calls it “looking for crumbs.” It’s quick, anonymous cash, $50 to $100 a crack. If they’re looking for a male his age and race, he applies. Any other qualifications he figures he can fake.

Dick Cheney does a lot of internet research on whatever it is he’s pretending to know something about so that he might somehow contribute something vaguely useful to the focus group discourse. He’s done hundreds of focus groups. The first one was when he lived in Philadelphia. They were looking for “distressed homosexuals” to do a smell study. Dick Cheney was only half lying when he applied. He is distressed. (Who isn’t?)

“They passed around these vials that had cotton balls that had body odor on them,” Dick Cheney remembers. “And we were supposed to take a sniff and then answer this electronic questionnaire that had really random questions, like questions about dolphins and like ‘How old were you when you first went to the zoo?’”

Everybody who’s lived in the big city has a story about jumping through similar flaming hoops in order to hustle up the rent. I have a vague memory (I’ve managed to blot most of it out) of being an emcee for a puppet show about cripples. There was a little kid puppet in a wheelchair and a little kid puppet on crutches. I think there was a blind puppet too. And there was this bully puppet who laughed at them and called them names. And I think they all went skiing or something. I don’t remember. We took the puppet show to a second grade class and they were catatonically bored. And my job was to tell the kiddies that the moral of the story is deep down inside we’re all just the same, or some annoying crap like that. Like I said, I’ve blotted most of it out. It’s too painful to recall. The point is, we’ve all had to sink pretty low.

Dick Cheney’s most recent focus group was the weirdest. “It was the only one that involved my penis.” Again he lied and said he was gay. They slipped a ring on his penis and taped a tube to his nostrils. On the screen, flashes of gay porn. Flashes of animals fucking, like on National Geographic. A voiceover of a woman with a British accent talking about fish. More gay porn. From the tube puffed scents of orange and floral. The screen went purple. Then suddenly, dolphins swimming in a coral reef! Dolphins mating! More damn dolphins, just like back in Philly! None of this aroused Dick Cheney’s penis.

Even after that, Dick Cheney isn’t considering retiring from lying for a living. He can’t afford to.