There was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.
Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
The objective of indifference was achieved even as ADD was in the media, was reported on in the news and advertised. It wasn’t a secret. It was euphemistically present in speeches duly delivered in committee meetings, regulatory hearings, faithfully reproduced in the print records of the public domain. There was no cover-up, no sneaking the resolution on to the ballot. All above-board and honorable and in the public’s best interest. Dignity Has Never Been So Within Our Reach. Earnest modern alchemy, how to make the base substance into cold cash. Magicians, start your engines.
Marketeers, introduce your faithful repertory character, The Poor, who will today be playing semi-malicious poopers out to get Mom and Pop, who put every dime they had into The Backbone of American Business, their head-shop on Haight Street that sells bongs, whippet cannisters, feathered roach-clips, and what appear to be a number of human bones, including a few spinal vertebrae from, not an American Business, but the backbone of an American opossum from Bakersfield.
Public commentary on ADD was not forthcoming. Tumbleweeds rolled through the public hearings the public was so not there. The public didn’t see the news segments the way they didn’t see other members of the public lying on sidewalks with slow trickles running away from their prone figures.
The only community people not thrilled with The Dignity Initiative’s Adult Diaper Dispensation “underwear for the under-housed” program were politicized disabled people who knew diapers from dignity the way they knew segregation from choice, and they didn’t like this development one bit. The budget for their top-level messaging was significantly smaller than The Dignity Foundation’s and, it must be admitted, not inclined toward innocuous word-play.
Violence and force are two different things that are often used interchangeably in conversation. Stars smash into each other and disintegrate; jackals feast on a gnu’s entrails; raindrops pound the soil, but is the earth defenseless or wounded when the clouds burst – ouch! – or is it that our language is itself so saturated with pure meanness that we can’t imagine the playground without a bully? Is meaning an offshoot of being mean, or vice versa?
People’s immune systems are not actually attacked by bandit bacteria or viral out-landers that gallop into our nasal cavities and digestive tracts to ravage the town-folk. Your colon’s name is not Dr. Evil. (If you must know, your colon’s name is Todd.) Our bodies are never peaceful, solitary towns; there’s always some minor fracas getting sorted out after someone eats week-old take-out or gets sneezed on by a kid in daycare, or has sex without peeing afterwards. The bad element live in us year-round and aren’t all that distinguishable from the solid citizens. Good and bad aren’t very useful descriptions anyway. Moral judgments don’t have a lot to do with health or physical matter in general. Which is not to say that a bad bout with a catastrophic illness won’t scare the hell out of someone and make them prone to begging the government to fund a war on the disease. It’s understandable, the fear. But the idea that there are commando cells just isn’t accurate.
Keeping the distinction isn’t about kicking sand in the faces of the puking, hacking miserable souls who might well take this as a personal affront to just “accept” their illness. No. No. Being sick sucks. But the physical universe doesn’t rub its palms together over the thought of tying us to a railroad track. It’s just us, one kind of stuff, bumbling along, moseying to wherever, multiplying and dividing. And on. And on. It’s not very Zen, it’s not transcending anything, it’s not letting go. It’s stuff, animate. It’s collision without conflict. That’s all. That’s a lot. Something in the physical world will kill each of us but that doesn’t mean the physical world is out to get us. It’s not on our side, either. That means that the cold you didn’t get last year did not necessarily demonstrate anything other than your particular immune system was incompatible with that particular virus.
Wars have battles, winners and losers. And traitors. In the clinic where Gretchen worked, the flu season took a particularly heavy toll on her coworkers, and not just because of the flu symptoms. There, like most places, talk of getting sick quickly turned to guilty confessions.
Gretchen’s coworkers, though surrounded by patients who were coughing and sneezing, still talked about their own failures to eat right, work out, think nice thoughts, think not-nice thoughts and blow those nasty bugs but good, wash their hands after handling money, take a mega-vitamin, wash their hands after handling preschoolers, meditate, wipe the phone’s mouthpiece. As if they had crept down the stairs to the gate of the citadel in the dead of night and waved the enemy in. At the very least, they talked as if they had lost a battle it was their responsibility to win, when really, we know we’re going to lose, it’s just a matter of when. It’s called death.
There was fear right in there with the guilt. If the guilt was misplaced, the fear was right on. Fear that no one would care for them, which was quite possible. Fear that no one would care for their children, parents, the friends they cared for.
Emotions may be free but help – a doctor’s, a pharmacist’s, a babysitter’s, a house-cleaner’s — costs money. The saying that time was money was true. And everyone’s time was already stretched thin. No one felt right asking for help from such busy women. It’s the fear that makes assisted suicide look like a helpful suggestion rather than an acknowledgment that compassion has been defeated by money. It takes a great deal of time to suffer with somebody, and it costs more to help someone live than it costs to help them die. Dignity At a Price You Can’t Beat.
Wars had to be winnable, at least in theory. Dignity Has Never Been So At Risk. But the war response to disease is a non sequitor. Disease was just doing what it does: live, decay, die. Nobody said you had to like the disease. Or a congenital condition like muscular dystrophy. But vilifying it was a waste of time, and to Gretchen, made questioning the value of genetic reparative therapy more difficult.
Questioning was not condemnation. Was it? Gretchen may not have wanted to be cured of an unpopular condition but that was her choice. “Cured” sounded like “easy money,” or “drug-free society,” or “all the flavor without the fat.” Flawed premises that made it easier to complain that somebody like her was costing too much with all of her elevators and machines to breathe and what all. She did think cures had a lot to do with that. You don’t buy a bigger house to accommodate a house guest, right? It’s okay to have ‘em sleep on the couch cause it’s only for a few days and, really, they ought to be grateful for that. Right?
A cure meant no long-term planning was necessary. No big changes in anybody but you. No moving money around in the old household budget, realizing you had expenses you’d ignored before. Anybody, really, can acquire a need for a breathing machine. Or a cab to get to work. But because those needs are not the norm, sometimes a person pats herself on the back for the leanness of her economic machine, and how not giving in to sickness was really just a choice she had committed to, now that she was insisting on a healthy lifestyle. But again, new needs can be acquired and along with the subtle – or not so subtle – message that she brought about the need through ignorance/selfishness/laziness/gluttony, to name a few, she will discover the high medical prices that accompany – ironically — declining earning power.
Maybe she’ll want to bear a child and discover she has limitations in this area. She may go on to need fertility drugs – ka-ching! – and those hormone treatments – ka-ching! – aren’t covered by her HMO, and then the pregnancy becomes a multiple, raising the question of termination, and that necessitates some focused mental health counseling – ka-ching! — again not covered by the HMO, and they proceed with all three intact, she can handle it, but then bed-rest is prescribed at four months, so her income may well be reduced or out the window – ka-ching! – and early labor commences and the neo-natal intensive care unit – ka-ching! – is on alert and three births are followed by children with several disabilities, some immediately apparent and others that may or may not show up later on.
The definites include the ka-chings! for the out of pockets like the hearing aid, the educational testing, the speech therapy, the orthotics. Every prospective mother would do well to remember that not even the goddess of the earth herself was a match against her brother, who had both certain death and unlimited wealth on his side.
Not to mention the biggest toll, the terror she lives with that her children, subject as we all are to the forces within their bodies, will be excluded at every turn, or taunted, or just ignored, making those forces within and the violence without hopelessly tangled together. And it is just too horrible for her, like so many non-disabled people, to contemplate her children being different and therefore always on the outside. Waiting for her children to be found by the bully. So she wants to erase the target on her baby’s forehead, cure that red flag that catches the bull’s attention. But no medical breakthrough can cure the deepest sickness of the human being, it can only treat the symptom: choosing to hurt someone because you can, because you’re stronger, or smarter, or have more money. There is no cure for a speeding car, there is only staying out of the street.
(TO BE CONTINUED)
There’s No Cure for Gretchen Lowe is an unpublished coming-of-middle-agecrip lit novel. Within the broader realm of literature featuring characters with disabilities — #DisLit and memoir — #CripLit presents an understanding of disability using the lens of the social model. It eschews disability as a narrative device and shortcut for conveying sentimentality, heroism, and disaster to readers.