#CripLit Chapter 2: Funktionslust

 

"...—a word
  for what a sailboat knows, running before the wind—"
Charles Harper Webb, Funktionslust
 

Color photo of a Milwaukee back-brace.Alice was a tidy packer but there was no way she had fit all that into the one suitcase. Accepting the coffee her mother handed her, Gretchen waved off questions about her sore throat, eyes glued to the three objects lined up on the couch next to the sleeping Phoenicia. She rocked thoughtfully as Alice fretted about her being too ill for the clinic visit later in the day.

“Will you please relax, Mom? You’re looming. I’m fine.”

Alice tossed her the second gift, a dark blue paperback that landed on top of Dolly in Gretchen’s lap, making her gasp with laughter and ask, “Where did you find this?” But it was the third, the final gift, that made her sit back and say, “Oh good god.”

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Sorrow, Bright-Eyed Now, After Meeting Her Death

for Belma González
I

BIPAPSTWhen Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.

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#CripLit Excerpt from “The Copier God Unleashes the Flood Waters”

Was taking assistance from an aspiring sterilizer of the indigent morally acceptable? Was peeing on his shoes more embarrassing to her or him?

As the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen had met their new neighbor, Randy,  at a house party on Alamo Square one of their donors had thrown the year before. She had been new to representing the clinic at these things and wandered on the edges. The house had been a nightmare for her to get into, a mountain of boxy, tiled steps out front and an over-sized brass banister that was useless. An observant guest, a middle-aged woman, saw her hesitating on the sidewalk and offered an arm. She turned out to be a charge nurse at the university hospital who knew even better than Gretchen how to get a person up some stairs. Gretchen thanked her effusively and filed away the hand-on-elbow, lean-on-forearm technique.

What’s All This About #CripLit? I’ve been writing stories since the 80s and becoming progressively more disabled since 1965. I write what I know but I don’t want to know what I’m writing before I write it. To me, “CripLit” means characters who are disabled and embrace the politics of disability, its ethical and moral dimensions. “And with a little sex!” to quote Sullivan’s Travels. © 2016 talesfromthecripblog.comGretchen had been there for a very long hour when she started to need a bathroom. She asked a man standing alone near the front door who was staring into his glass if he knew where it was. He pointed to a line of people in the hall toward the kitchen.

“Only one,” he said. “I took care of things right away, myself.”

“Great, thanks so much,” Gretchen said, moving away.

He trailed after her, still eyeballing the bottom of his glass with its quarter inch of liquor. She attached herself to the bathroom queue and crossed her arms, resolutely facing away from him.

He — “They call me ‘Randy,'” — became quite chatty now that she had her back to him. Divorced, newly retired, just bought a house nearby. Fantastic investment except for the scum that came with it.

She turned around. “Scum?”

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I want them to want me because I will need them to need me but if that’s not going to work, I want a lawyer.

Every time Gretchen saw the forms on her desk at home, a wave of resentment rose. How did she know what it was like to use a feeding tube? Or a ventilator? Or have minimal brain function, for god’s sake? It was like asking an eight year-old to sign up for – or against – puberty.

Oh sure, she fumed in the dark, awake and annoyed. Tomorrow, Dr. Gabriel would repeat the official line: She could choose all medical interventions. She could elect to have whatever she wanted.

Oh, that was such bullshit. Who was going to pay for all this choice? Which meant it wasn’t really a choice at all. The problem wasn’t too much extraordinary medical treatment, it was the limits of ordinary medicine to worry about, mostly financial. She didn’t have a problem being kept alive through artificial means now – she’d never seen a dollar bill push out of the dirt in spring – so she didn’t see any reason to assume she would resent it later on.

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Worse Before It Gets Better

Bad news abounded. Laundry piled up, the milk ran out, unwanted hairs sprouted, bulbs blew, noses ran, plaque formed along the gum-line, knives dulled, spots formed on glasses, smiles upside down were frowns, drawers jammed, toes poked through socks, deodorant wasn’t up to the task, salad dressings separated, words failed, a button fell off, hair conditioner quit, bacon was all fat, phone lines crackled, pens exploded, bills went to the wrong address, cookies were fat-free, chips were baked not fried, tomatoes were odorless, ants found the sugar, beds didn’t make themselves, practice didn’t make perfect, virtue was its own reward, youth was wasted on the young, herding cats was like herding cats, the elevator went in only two directions, all clocks were right twice a day, the bottom graduate of the medical school class was called, “Doctor,” God decided s/he was a doctor, shelves collapsed, silverware disappeared, underwear ripped, carob replaced chocolate, women gossiped while men shared confidential information, men were passionate while women were bitches, asteroids threatened life as we know it, very small life was living all over us every second, your last meal was your last meal, paper cuts stung like the dickens, it was quality versus quantity not quality and quantity, a never-ending pasta bowl was not that terrific a value, very few people had attorneys on hand to review credit card insurance agreements, drains clogged, birds made nests in chimneys, pictures hung crookedly, the other shoe dropped, desperate times called for desperate measures, ends split, water pressure dropped, trash bags broke, gutters flooded, flowers wilted, volcanoes spit, toddlers’ towers of blocks tumbled, telemarketers called, relatives visited, barn doors were open, flies landed on your hamburger, that sense of permanence was an illusion, crime paid, termite damage continued undetected, that last step was a doozy, the good old days weren’t good for most people, that was supposed to be French fries instead of cole slaw, 186,000 different chemicals were legally dumped in California without manufacturers knowing their effect on human or environmental health, heavy metals accumulated in breast milk, some of those manufacturers donated money to cancer “advocacy” non-profits that ignored how their donors were creating disease, a pregnancy was terminated because Down Syndrome was present, a child was removed from a mother because the mother had Down Syndrome, a woman with Down Syndrome was forced to file a lawsuit against a hospital to get on a transplant list, protests clashed with the real world, elective cosmetic surgeries boomed along with infant mortality, the days got shorter and the nights got longer, US soldiers’ deaths, gas prices, and SUV purchases soared, the term “green-washing” referred to donations made by a company that disposes pesticides in poor communities to reputable non-profits fighting disease in those communities, Wiley E. Coyote met the business end of an Acme anvil, motel wall-to-wall harbored who-knew-what, San Francisco apartments lacked screen doors, gestational diabetes was not covered under the federal Healthy Families program for pregnant women, Mars Bars were being edged out by Snickers With Almonds, paint dried way too slowly, devilled eggs were made without mustard, what looked like a pound of coffee in the grocery store was twelve ounces and then eleven, Henry Kissinger was touted as a statesman, the phrase “Nixon who?”was heard, Tom Lehrer’s reference to “pre-nostalgia” lost its irony, waxy yellow build-up built up, potatoes sprouted, alfalfa sprouts spread salmonella, anti-bacterial soap spawned resistant strains, regular soap got rid of bacteria just as well by washing with it for 26 seconds, Brussel sprouts were soggy slimy little balls of stink, cruciferous vegetables everywhere were over-cooked, inadequate representation sent disproportionate numbers of innocent poor, minority, and low-IQ people to prison, mentally ill young people ended up in the criminal justice system because it was the best-funded system, fake butter ran rampant in movie theaters, Mexican cheeses languished in obscurity, inner beauty felt dissed by the phrase “Beauty is only skin deep,” there was a rock and a hard place, the bus was late, the baby cried, the tub overflowed, the wine was corked, good loving went bad, someone ate crackers in bed and was kicked out, the devil got his due, the crackers were stale, time waited for no man, linen wrinkled, bank fees multiplied, interest rates jumped, delicate complexions freckled, whites yellowed and blacks faded, paper rotted, families fought, the remote disappeared, Dad was hung-over, a kid decided to heat the whole outdoors, balloons popped, clowns were scary, it was all uphill from here, toilets backed up, dandruff flaked, a good deed was punished, the microfilm fell into the wrong hands, the screen went blank, it took two for the carpool lane, the dog threw up, kitty went to a family in the country, dinner burned, peas fell off the fork, stars exploded, grass went to seed, dander caused a sneeze, fingernails scratched a blackboard, a killer stalked his prey, a hamster was lonely, skilled workers lost jobs, petro-chemically based dyes pinkened salmon, sleep deprivation ravaged immune systems, fists slammed faces, hunger slowed baby brain development, the plan didn’t cover prescriptions, the key broke off in the lock, it wasn’t you it was me, you did want a person like that to be your friend, pennies were not accepted, diamonds were not a girl’s best friend, the court found you guilty, oceans warmed, ghosts moved the bureau, teenagers groused, lightning struck, trees fell, lightning struck twice, fascist regimes replaced dictatorships, a wedding ring was slipped into a pocket, a hat looked goofy, furrows deepened, teeth ached, money talked, children lost the bread-crumb trail, charlatans duped, lone witnesses recanted, credit cards were denied, fathers skipped town, stitches opened, no one had to know, aqua was not your color, most men weren’t seven inches, telephones didn’t ring, lines went down. Pots boiled over.

excerpted from The Cure for Gretchen Lowe
2006

I Never Told You

Gretchen’s mood, as well as her judgment, wasn’t helped any by a letter she received at the clinic. The letter congratulated them on being selected as one of the test sites for the Dignity Initiative’s Adult Diaper Dispensation (ADD) program over the next year. At first she thought it was a mistake, but an embarrassing phone call to the program’s administrator revealed that one of her very own board members had applied on the clinic’s behalf. It was Patrick, an old-timer who had fought term limits the hardest. She didn’t bother calling him. She called the board chair, Frank, who was a muckety-muck partner in a law firm. She was disgusted to learn he knew about it. She wrote a letter to the executive committee explaining they had to withdraw and why, and couriered it to each. That got a response. They were polite but said the money was needed. Reading their letter, Gretchen fought the urge to reply by saying, “So, the staff can turn a few tricks if need be?”

But clearly action was needed. The next meeting was nigh. When Gretchen sent out the agenda she added “Dignity Initiative inservice” as the first item after Review Minutes. She made sure “Refreshments will be served” was on there because she wanted good attendance. Carefully, she selected Buffalo wings, salted cashews, wasabi peanuts, iced tea and, as a special surprise, cold beer, and set them out on the reception desk. As they trooped in, exclaiming as they saw the snacks, she urged them to put their things down in the waiting room, grab something to eat – have a beer! – and soon the meeting would start.
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Dignity Has Never Been So Disposable

San Francisco had recently become the first county in the country to officially give up on the idea of clean, accessible public bathrooms, available to all in need without regard to payment. The unpropertied in SF were just beginning to walk around with bulgy seats now that all General Assistance recipients were issued a box of generic diapers along with directions to the city shelters, a pamphlet explaining abstinence (UCSF had a grant pending to study the effect of Adult Diaper Dispensation (ADD) on homeless people’s adoption of condom use versus abstinence-only), and $6.95 to get them through the month. The Dignity concession was doing a brisk trade at Pier 39 for unprepared tourists on a budget; a one-day Fun-Pak went for 8.99 but did include two Maxi’s, a plastic Dungeness crab key-ring and a coupon for one Buena Vista Irish Coffee. Dignity Has Never Been So Disposable. A virgin diaper was going for five American Spirits on Sixth Street. The Sheriff’s Department had to fight for, but got, toilets in their renovated facility.

Bureaucrats who may or may not have been wearing a small pin on their lapels, a pin in the shape of a diaper, a stars-and-stripes-waving flag-type diaper almost wing-like from a distance, may or may not have attended a conference in the Caymans to sit in the louvered sunlight of a hotel’s banquet room, listening to presentations such as “Contained Defecation for the Economically Disenfranchised: A Cost-Benefit Analysis.” One of them may or may not have been on the board of a small clinic in San Francisco. None of the conference participants gave any thought to the number of cups of coffee s/he consumed. The conference center had plenty of restrooms. No extra charge. All fees underwritten by the Dignity Foundation, a charitable organization dedicated to community development, medical research, and K-12 education. Please take an annual report. Dignity Has Never Been So Within Our Reach. Earnest modern alchemy, how to make the base substance into cold cash. Magicians, start your engines.

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