I was on television in Chicago recently. I didn’t see it but I know I was on television because the last time Mike H saw me he said, “You were on television, weren’t you?” He said that because people kept coming up to him on the street recently and saying, “You were on television, weren’t you?”
That because Mike H. looks just like me. He looks just like me in the sense that he’s a white guy with a beard and he’s about my age and he’s in a wheelchair. Mike H. doesn’t have arms but no matter. That’s a small detail. He’s a white guy with a beard and he’s about my age and he’s in a wheelchair so he looks just like me.
I know how Mike H. feels. A few summers ago people on the street kept coming up to me out of the blue and saying, “You sure do sing nice.” I didn’t know what the hell they we’re all talking about. But then I ran into Mark K and it all clicked. Mark K told me he sang the national anthem before the Cubs game. And Mark K. looks just like me in the sense that he’s a white guy with a beard and he’s about my age and he’s in a wheelchair. I do bear slightly more of a resemblance to Mark K. than I do to Mike H. because Mark K. has both arms. And people come up to me on the street every summer, every time Mark K. sings the national anthem. “You sure do sing nice.” And I pray that Mark K. never goes berserk and sets out on a wild, cross country bank robbing spree. The FBI will release a sketch of the wanted suspect and everyone will think it’s me. The news anchor will say “police are looking for a bearded white guy in his 50s in a wheelchair” and the minute I leave my home I’ll be apprehended. Poor Mike H. will be arrested too. But we’ll probably be released for lack of evidence. When they put us in a police lineup with four other bearded white guys in their 50s in wheelchairs, most people won’t be able to tell any of us apart.
Some people must think cripples all talk alike too. Stephen Hawking has one of those talking boxes with a robot voice. My friend Larry B. has one of those talking boxes with a robot voice too. Therefore Larry B. talks just like Stephen Hawking. Wouldn’t it be great to turn on the television and see Stephen Hawking on the field at the ballpark singing the national anthem in a robot voice? I think that would be so cool. But it would be really super cool to see Stephen Hawking on Dancing with the Stars! His dance partner would be a stripper doing a pole dance. And Hawking dances the role of the front row customer. He sits there leering, a dollar bill hanging from his mouth. The stripper, hanging from the pole, whirls by and snatches the dollar and stuffs it in her cleavage.
Seeing Stephen Hawking going around doing all that stuff would be so awesome! But none of it will happen soon if ever. Humans haven’t reached that stage of enlightenment yet. I’m sure Hawking would be game, but the producers will have none of it. To have someone like him singing the national anthem would be considered insensitive, unpatriotic, creepy. Modern civilization doesn’t yet have the capacity to process such an unabashed blast of advanced cripple awesomeness.
But if the day ever comes when Stephen Hawking sings the national anthem, people will come up to Larry B. on the street and say, “You sure do sing nice.”
Wednesday, May 25, 2011
Thursday, May 19, 2011
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?
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?
Friday, May 13, 2011
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?
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?
Friday, May 6, 2011
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.
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.
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