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.
There was a remarkable lack of public debate on Adult Diaper Dispensation. It was in the media, it 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. It 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). 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. Public commentary 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 part of the adult diaper movement who responded at all were the politicized members of the disability community who knew diapers from dignity the way they knew segregation from choice, and they didn’t like this development one bit.
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 outlanders that gallop into our nasal cavities and digestive tracts to ravage the townfolk. 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 is 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 megavitamin, wash their hands after handling preschoolers, meditate, wipe the phone’s mouthpiece. As if they’d snuck 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. Because emotions may be free but help – a doctor’s, a pharmacist’s, a babysitter’s, a housecleaner’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 want 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 will be excluded at every turn, or taunted, or just ignored. And it is just too horrible for her, like so many nondisabled 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.
excerpted from The Cure for Gretchen Lowe