So I have had to make conscious efforts to build up my self-esteem, to tell myself that I am a good person, that I am trying, that I am as good as the average guy working down at the 7-Eleven or over at IBM. I have to tell myself that because the daily message from Welfare has been that I am one more degenerate whose family has lived on the dole for generations.
A year or so ago I began hearing about something called a “Plan of Support,” an obscure regulation written entirely in legal gibberish, no doubt to keep most clients from trying to take advantage of it. A “Plan of Support” allows certain Welfare recipients to earn and keep some income if certain criteria are met. For example, I might be able to keep enough for a part-time secretary or some travel expenses.
In effect this plan would give me permission to pay for the overhead expenses of my business with money I earned. To me, this would be a godsend. There are many tasks I can’t perform because my fingers are mostly paralyzed. For example, it’s extremely difficult for me to send new material to my major clients. They are running cartoons already “held” from previous mailings. I need someone to come in and duplicate most of a year’s output, with copies going to my agent, my clients, a fireproof master file, and a working file. I need a log kept of who has what. I need billings and receipts straightened out. I need to order tax records.
In the past, girlfriends have sporadically tackled this job, until, understandably, they got tired of it. My attendants are too stressed by what they already do. I need a secretary.
I can’t write, or edit what I write, on a typewriter. I need a personal computer with a keyboard suited for what my hands can do.
And, like anybody who sells, I occasionally need to meet face-to-face with my customers. I can’t compete in the world’s toughest marketplace, the New York publishing world, as a disembodied voice on the phone. Not forever, anyway. Yet right now that’s how I’m dealing with Penthouse, Omni, National Lampoon, Forum, American Health, Vanity Fair, The New Yorker and a baker’s dozen of newspapers.
My agent and I sat down and wrote an application for a “Plan of Support” according to the complicated regulations, which we had translated for us by a volunteer lawyer. So far as I could discover, no one in Portland had ever done this before.
I gave the finished plan to my caseworker. She passed it to her supervisor. He passed it to somebody at the head office, who passed it to somebody else, who probably passed it through his colon into a toilet, which passed it into a river, which passed it into a sea. It flat fucking disappeared! Nobody has any idea what happened to it. The volunteer lawyer is still trying to find it, nine months later.
I want to get ahead. I have the talent, the ability, the desire, and the moxie to do it. I have twice the drive of the average able-bodied person. What I am being told by the Welfare system is, no, we won’t let you do it.
I don’t have time to march around town with a placard that says, “Unfair to SSDI Quads.” I already sacrifice a good part of my day to my morning program. Much of the rest of the time I’m sick or immobilized by one thing or another. I’ve tried everything I can think of. There is no effective lobby for quadriplegics, but I’ve given what time I could to the National Spinal Cord Injury Foundation. I’ve written or called all my state and federal congressmen and senators. I’ve attempted to get some legal pressure brought on the system, but “poverty law” is unattractive to most lawyers because it isn’t remunerative. The very distinguished attorney who is working with me now is a rare bird indeed.
There needs to be some ombudsman or legal resource for all Welfare clients, because the system so easily lends itself to abuse by the givers as well as by the recipients. Welfare sent Suzanne to snoop around in my apartment the other day because I was using a larger than usual amount of urological supplies. I was indeed: The hole that was surgically cut in the wall of my abdomen has changed size, and the connection to my urine bag had been leaking.
The implication of her visit was that I was cheating. What did they think I was doing, selling urine bags to Greeks as wineskins?
While she was taking notes, my phone rang, and Suzanne answered it. The caller was a state senator, which rattled Suzanne’s cage a little. Would I sit on the governor’s advisory board and try to do something about the thousands of Welfare clients who, like me, could earn part or all of their own living if they were allowed to do so, one step at a time?
Hell, yes I would! I’d sit on a goddamn emery board if I could help change some of these medieval rules that have given me gray hair and a heart murmur! Someday handicapped men and women will be thriving under a new system based on incentive and encouragement. They will be free to develop their talents without guilt or fear—or just hold a good steady job.
I hope to see it happen before my benefits are finally terminated by the Great Caseworker in the Sky.
Chapter 10
How many times has this happened to you: You’re in a public toilet with a quadriplegic. Suddenly he turns to you and says, “Say, my hands are a little numb. Would you mind catheterizing me?”
If you feel at a loss in this situation, you’re not alone. In the years since my accident I’ve had plenty of opportunity to study the way able-bodied people behave around the maimed. Few display any savoir faire.
Often I’ve found myself in a slow elevator with a crowd of people who first stare at me and then look away. I try to break the ice with a pleasant remark, such as, “Damn! I knew I should have crawled up the stairs!” Suddenly everyone seems to take a vivid interest in fake oak panelling.
Experiences like these have led me to create my award-winning guide, How to Relate to Handicapped People. Take a few minutes to study it now. And remember, there’s a quiz at the end.
In the past, handicapped people weren’t an issue because they weren’t seen around much. They were “shut-ins.”
Today, handicapped people are more visible than ever. Yet people are often still uncomfortable around them. In an attempt to be appropriate, people tend to overcompensate.
The first thing to realize is that the handicapped are just like you or me!
The correct way to approach a handicapped person.
Don’t be afraid to ask questions—children are spontaneous and uninhibited in their curiosity. Take a lesson from them. . . .
When should you help a handicapped person? (Many people have expressed anxiety regarding this issue.) Basically you must use your own judgment.
Handicapped people can be helpful to you sometimes. Let them! Handicapped folks get a special sense of usefulness when they are on the helping end of a situation.
If you enjoy a handicapped person’s company, what’s next?
Over the years many myths have arisen. Here are a few we’ve heard one too many times!
Odds ‘n’ Ends—How to communicate with someone who has a speech problem.
NOW THAT YOU’VE brought yourself up to date, let’s review what you’ve learned. (For correct answers to these questions, send a check for $25 payable to CASH to the address below.)
Chapter 11
6:30A.M. and the sounds of church bells and retching just about knock me out of my bed, positioned near the front windows of my ground-floor apartment on Davis Street. It’s the Wake-Up Call at the End of Time. DONG! DONG! DONG! DA DONG! Saint Mary’s Cathedral, half a block away, is summoning the insomniac faithful of the whole city to early mass. While at the same time, BLEAGHHH! BLEAGHHH! BUH, BUH, BLEAGHHH! Johnny the wino is raising his stomach contents from the depths of intestinal hell. Today he’s got his ass planted on the brick ledge of my windows, not eighteen inches from the bed. Not all that unusual. Some people wake up to birds. I wake up to winos.
I can see him through the curtains but he can’t see me. Finished with his retching, he spies some geriatric cleaning lady on her way to the Holy Ghost. “WANNA DRINK, CUNT?” he bellows. Johnny is locally famous for his obscenities, always delivered at the top of his lungs. There are about a dozen bums and winos floating around between m
y apartment and the cathedral, but Johnny is outstanding. He’s a psycho as well as a very late-stage alcoholic. He yells filth continually, even when there’s no one around to be shocked. If he spots me watching him, he stops making sound, but his lips go on moving. When he thinks I’m out of earshot, he starts cursing out loud again.
I roll my bed up to the sitting position, thank God for another beautiful day, and do my morning meditation. Keeping the spiritual mood, I turn on the TV and check out Geraldo Rivera fearlessly investigating bisexual cardinals plus a man who plays meat for a living—some public-spirited topic. Thanks to cable I can enjoy Geraldo at the crack of dawn.
Finally Alex arrives. He’s forgotten his key, as usual, and so pounds on the window, which is latched shut. I have to bludgeon the latch open with the back of my hand, trying not to break any bones in the process—I can’t feel it after all. I slip Alex my key through the window; he spends five minutes trying to get it to work in the outer door. “Hi, Alex, are you stoned?”
His totally bald dome turns red with annoyance. “Of course I’m stoned!” he snaps.
“Nothing in the cupboard,” Alex reports from the breakfast front. “Nothing in the refrigerator, either. There’s only this.” He shows me a box of prunes so old there’s a curse written on the back in hieroglyphics. I’ve got doctor’s orders to eat cereal with the texture of barbed wire to aid my bowels. Instead, Alex goes around the corner to McDonald’s and comes back with a couple of Egg McMSG’s. There’s probably more fiber in the dollar bills he used to pay for them.
Now it’s time for my daily range-of-motion exercises. Alex stretches my legs, runs them through the motions they would experience in a normal day if I weren’t paralyzed. This keeps them limber, prevents the tendons from tightening up, tones the muscles somewhat, and in general readies them for that wonderful day when touching a picture of Elvis Presley will cure me spontaneously.
During the exercises I always sing, to the tune of Little Eva’s “Do the Locomotion”:
Everybody’s talkin’ ‘bout the range of motion
Come on Baby, do the range of motion
(do the range of mo-tion!)
Alex is usually off in a reverie of marijuana nightmares as he takes my legs through circus contortions. You can see the tombstones in his eyes. Then he helps me swing into the shower chair, and it’s time for the bowel program. I can’t get into the bathroom of my current apartment. The one good thing about the government housing was its wheelchair-accessible bathroom, complete with bar and roll-in shower. You could be a very clean mugging-and-robbery victim. Now I look on in envy as the cat prances into my bathroom to do his number while I must crap in the kitchen.
Alex gives me a suppository and as usual stands around daydreaming.
“Alex, I don’t pay you to stand around with your thumb up your own ass!” After years off and on as my helper, he’s used to that.
It’s always annoying when visitors drop by during my bowel program. So I have Alex greet them at the door with the rubber glove on his hand. Only the most constipated come in. Once, after seeing a story on 60 Minutes reporting the use of trained monkeys to aid quadriplegics, I told Alex, “Sorry, you’ve lost your job. There’s a rhesus monkey standing out in the hall with a box of rubber gloves and a jar of Vaseline.”
For my “shower,” also in the kitchen, Alex spreads a tarp, and I sit next to the sink and douse myself. I probably should move to a more accessible place, but I like being downtown, and downtown ground-floor apartments are cramped. The alternative would probably be out in the suburbs, “The White-Trash Crest Apartments”—a defunct Jacuzzi as the main attraction, turds from small dogs all over the lawn, and a neighborhood social life revolving around the Minit Mart.
So I get all clean in my makeshift way and get toweled off, at which time Biggie, my nineteen-pound cat, jumps into my lap. Biggie sleeps in a cupboard twenty-two hours a day, rising only at bath time and at 2:00 A.M., when I am finally getting to sleep, to cover me and the bedspread with shed hair. Job done, the cat grants me a few kisses, walks around the house once, yowling and spraying, climbs back into the cupboard, and goes to sleep.
Once a week, just after my shower, we have to change the urine apparatus that is patch-glued to the permanent opening at the lower right-hand corner of my stomach. I slip back onto the bed. The old glue gets scraped off and a new self-adhesive patch, tube, and bag unit is pressed on. If it’s not done just right, I leak. I’ve been writing a song about this:
I broke my neck upon a rock
And now I cannot feel my cock:
The doctors filled me up with fibs
And now I piss between my ribs. . . .
I can see Neil Diamond singing it.
During all of this the phone rings continually. My New York agent calling to make sure I’m going to deliver what he’s promised. Editors, people working on the film projects, friends, relatives. . . . Deborah Levin, my manager, calls to make sure I’m not going to wimp out on her. She’s where I get three quarters of my strength, a hard-driving, humorous woman, constantly kidding and prodding me. “Did you send that stuff for the licenser? Did you draw the ‘Gag of the Week’? Did you do the photocopies for chapter nine? Did you get a haircut for the People magazine photograph? Did you put the cat out?”
“John, there’s a guy on the phone says he’s from the Sexually Transmitted Diseases clinic. He wants to ask you some questions.” Kevin.
A few minutes later the phone rings again. “John, I’ve got some important news! Are you sitting down?”
Finally the moment comes for me to put my pants on crooked. My attendants have tried everything. We’ve called mathematicians, surveyors, Calvin Klein. . . . It’s just as if the gods said, “Let there be one poor slob whose pants aren’t straight one day in his life.” I’ve considered having my nipples moved off-center surgically so that they will line up with the pants.
At last I’m in my chair, Walkman in my lap, cartoons to photocopy, mail or deliver wedged in by my thigh. This is the moment of freedom! It’s noon, and I won’t be meeting my attendant until nine. So it’s good-bye to Alex and out the door for me.
It’s noon recess at the parochial school across the street from the cathedral. The children are playing in Saint Mary’s schoolyard. The sight of them gives me a chill. Boys dressed just as I was, twenty-five years ago, in salt-and-pepper cords, white shirts and blue sweaters, girls in white shirts and blue jumpers with pleated skirts. On the same block is the Hennessy, Brolin and McGee funeral parlor, through which Callahan corpses have been processed for generations. I remember when I was the age of these children, sitting still as death in the little parlor there, waiting for Grandpa Joe to twitch.
First thing today, I have a few errands to do in my own neighborhood, northwest Portland. In general it looks like downtown San Francisco but with more vegetation. There are handsome parks everywhere where you can be mugged and killed easily. A young man was found with his throat slit in the one three blocks from my house last weekend; the body was hanging in the children’s play structure. The wallet was missing, but the expensive watch, a gold chain, and gold cufflinks were not taken.
First stop is Elias’s Grocery, an old-fashioned neighborhood store with two items for sale: Thunderbird wine and chili weenies. Elias is Greek. His store caters to winos and serves as a social center for Elias’s Greek cronies. I go there to cash checks. Elias has been cashing my checks for years, and he pretends it still annoys him. When I push the door open with my wheelchair, he says, “Ya gonna cash a check today, Yonnie?”
“Sure.” I buy a bag of peanuts to mollify him.
“Hey, Yonnie, when ya gonna bring 60 Minutes in here? You gonna cash a check on 60 Minutes, Yonnie?”
After Elias’s, I get some photocopying done, check the answering machine back at my apartment, then roll toward downtown on West Burnside, one of Portland’s least fashionable but most characteristic streets. Once a wagon road, it now descends from the affluent Wes
t Hills to end among missions and warehouse buildings on the waterfront. There are a million street people out here, just a million! I love the street, the winos, the psychotics, the Christians . . . . I always run into about fifty people walking along with their hands outstretched, wild-eyed, their hair standing up like John Brown’s.
I’ve forgotten my watch, but it’s no use asking for the time in northwest Portland. You’re likely to get answers like: “I think it’s about noon.” Someone else will overhear this and shout, “No no no, it’s close to midnight!” A lot like my old haunts in Venice, California.
The beggars always hit on me, for some reason. Big, able-bodied geeks with fifths of wine in their hands ask, “Hey, buddy, got any money?” I say, “Look, haven’t we got our roles reversed here? Shouldn’t I be asking you for money?” Actually I feel a little out of place on Burnside because I haven’t got a shopping cart filled with bottles and old clothes. With hundreds of wino-bagos on the street, the competition for refundable cans and bottles is intense. These are hard working street people. Throw a can in a dumpster and someone will catch it neatly before it hits bottom.
Whores also hit on me. Assuming I’m not getting any because I’m in a wheelchair, they sing out, “Hey, can I ride in your lap?” Usually I tell them I’m a Mormon. It works, unless they’re Mormon themselves.
Things get more affluent as I approach the Galleria, a huge building with a covered atrium that has been converted into downtown’s most fashionable shopping center. People with petitions prowl all over the place.
“Sir, would you like to sign a petition supporting the anti-obscenity bill?”
“Fuck no!”
Mixed in with the petition circulators are cute young girls hired to hand out cigarettes, get you hooked on the latest poison. I tell them no thanks, “My arms are paralyzed.” Right in front of the entrance to all the mod shops stands the inevitable communist peddling The Revolutionary Worker.
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