for Belma González
When 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.
As the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen was the closest thing they had to fundraising staff now that their Director was on stress leave. She was supposed to represent the clinic at these house party things but here she was wandering on the edges, again, frankly worn out just from hauling herself in the door. Here was a question: Why does philanthropy so often require climbing stairs?
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.
“Dear Valued Healthcare Provider,
“I’m glad everybody’s so concerned about honoring my choices. I choose to have my medical care continue regardless of ability to pay or insurance coverage, deductibles, prescription benefits, or other cost issues….”
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.
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.
“I’ve talked about grief, how we are tempted to minimize, to look on the bright side, to do this thing they call ‘moving on.’ I told you everyone was going to give you conflicting messages, ‘Oh, we know how sad you must be, give yourself time to grieve, blah blah blah, while the next thing out of their mouths is something like, ‘But one of these days you will feel better.’ In other words, your misery is making us uncomfortable so hurry up and get over it.
“You know better. Grief, like any emotion, should never be minimized. It’s like those people who gulp aspirin every time they have a little headache or their temperature goes up. Nature gives us pain for a reason and many a research study that shows that letting a fever run its course is actually healthier than getting rid of it. Though I would never tell you to toss out your pharma-widgets, your anti-depressants and whatnot. I just ask you if you really understand you’re taking them to avoid your unhappiness.
“Let’s go back to some basics.
“One of the primary benefits of Transcendental Misanthropy is empathy expressed as hostility. I just love paradoxes. When you take the time to set events in motion that make others unhappy, you’re helping them understand your pain better. It’s a win-win.