Naysayers

"Ernesto" runs the cafe at the agency where I work. I noticed that my colleagues weren't encouraging E to do his job independently. I'd had some prior experience teaching cooking classes to blind teens, so I began working with him on grinding and brewing the coffee using nonvisual techniques. It's been a couple of months and he's completed training. He no longer needs our assistance to do his job. In fact, he's really great at it. He's a natural salesman, which I really envy.

My colleagues's have responded to all this not with encouragement as you would think but by grumbling about his "non- compliant behavior-" which I translate to mean that: they (the sighted staff) are made uncomfortable by the fact that Ernesto is doing his job independently- why? because said job involves handling hot liquids? And in what bizarre universe does wanting to do your job on schedule mark you as non- compliant?

Ernesto has come to me complaining about how these same staff members continue to tell him how to do his job. I suggested that he could go on strike on the days these folks' interferance becomes too much, but he has chosen to take the high road and negotiate, calling on a winning combination of charm and humor in dealing with these naysaysers.

I really don't care what they think. Ernesto loves his job and does it well. His social skilss are better than mine. End of story.

Whine and Cheese- I can't believe this thing is still around...

I'm taking part in Blogging Against Charity Day, hosted by Kara and Miss Crip Chick. Enjoy!

I remember watching the AMD telethon as a kid. I thought it was cool that kids with disabilities (who I totally identified with) got to hang out with celebrities for hours on end all in the name of a "good cause." The telethon looked like one big party- spoiled only by the pious whining of the host, who posed for pledge spots with children positioned like fashion accessories at his side.

The unease I felt towards Jerry Lewis was similar to the heeby-jeebies I experienced at Christmas in the presence of Mall Santa.

Mall Santa was inauthentic, tatty, an impostor whose job it was to affect paternalistic concern, the careless voyeur to my fledgling consumerism. Mall Santa had freakishly youthful skin and eyes. he said "like" and "cool" a lot. He could have been my older brother pulling a prank.

"So you want a Snacktime Kid? Dude, I heard those things bite kids' fingers off! Better not let it near your hamster, if you know what I mean!"

Mall Santa had surprisingly muscular legs, a high school jock in a fat suit and beard. I was mortified knowing that if I could feel leg muscles through the cheap velour suit, then surely he could feel my bony little butt. I felt dirty, like I'd signed up to make kiddie porn without knowing it.

When I was three, my mom was interviewed for a local fundraiser for the March of Dimes. I watched the show from home with my grandmother, talking to my mom through the television's speaker. For years I thought laugh tracks were the guffaws of people watching the same shows I was in their own homes. I'd laugh extra loud trying to hear my own voice in the chorus of chuckles.

My mom sat on a carpeted stage next to a large mounted television monitor. On the screen was a picture of a young mother pushing a child on a swing in a wooded playground. I don't remember what was said about me during the interview as a second generation disabled person. My mom was wearing a wool plaid skirt, the kind that always makes me think of librarians, and I remember the host asking her about the crutch that lay at her feet, about having polio as a kid and the effects it had on having kids.

My disabilities were too rare and too numerous to warrant a telethon. Nor did my disabilities elicit the classic "aww" factor favored by TV execs. Too many extraneous troubling things going on with my body at any given time to be easily "read" by viewers. Looking back I have to face the fact that I was a punk right out of the gate: too brassy, too bold, too weird to be typecast.

Glass Helmet

A couple of weeks ago I was riding home on the bus when someone threw a brick through the front windshild. It made a loud popping sound not unlike a bullet- for a moment no one was sure what had happened to send all the night's debris scurrying down the aisle. Luckily, no one was injured, but, sitting by a window, I had the distinct impression that my own skull was made out of glass. Now I know how the Visible Woman feels.

I've had this sensation before- standing at the edge of the South Rim of the Grande Canyon, walking home from the Loop the morning of the 9/11 attacks and sometimes on airplanes.

My first dramatic encounter with this sensation of extreme physical vulnrability occured during high school when I woke up in an ICU ward for head trauma patients. At some dim moment I noticed three people standing by the bed, the faces of my parents and best friend swam before me like scared goldfish as I was pushed beneath an opaque fog. I later noticed two objects occupying the hospital bed- a framed photo of my friend and a teddy bear dressed like Father Christmas. There was the aural memory of my dad's voice rising in alarm as someone instructed him to tilt my head to one side to prevent me from choking on my own puke, though now it's like it never happened. My sense memory is so detached from any physical discomfort.

I thought I must be dying. I wasn't supposed to be dying. I'd expected to wake up in a general recovery unit, before heading home with my parents, such was our routine, having by this time spent a couple of school holidays recuperaing from procedures to correct a cleft palette and underbite. My dad was a doctor. I'd practically grown up in the small rural hospital where he worked. We ate lunch in the hospital cafeteria every Sunday, not the questionable substances found in larger medical facilities. Our hospital served fried chicken and homemade blueberry pie (to us anyway, not the patients). To this day I feel rediculously at home in hosptals, though the cafeterias are generally a huge disappointment.

The next time I woke I was strong enough to gesture for a pen and a peace of paper to find out what was going on. My jaw was wired shut- that much was supposed to happen, and, as anticipated, I'd discovered I couldn't open my mouth.

My parents informed me that I'd received an emergency blood transfusion. I wasn't sure if I believed them, but I was still too drugged up to care. They said the doctor had "accidentally nicked" a blood vessel somewhere along my jaw line. Well, shit, I thought. But the exertion of being pissed off just made me want to go back to sleep.

During the pre- op exam, the surgeon had strived to convey what a stud he was at performing this particular procedure. In the proces of boasting he had convinced himself to forego the usual precaution of drawing blood from the patient prior to surgery. He'd also informed me that round faces are more attractive than long ones (such as my own). Not the bedside manner I'd been hoping for, but then most of my encounters with surgeons have elicited inappropriate comments. The way I feel about my disability is in many ways incompatible with their medical beliefs, for that is what they are, though a trained physician might scoff at the idea that her/ his pratice is based on anything but scientific fact.

The next time I woke up in ICU, the overhead lights had been turned off. From somwhere beyond the bed a nurse told me I was going to be moved to a regular patient room. I could only turn my head slightly to take in the lifeless bodies in the surrounding beds, a sight that made me want to hasten my retreat any way I could. I tried to get the nurse's attention through a series of wild charades. I hoped she would take note of my alertness in contrast to her other charges. Best not to confuse anyone. If I weren't dying, it was in my best interest to leave little room for ambiguity. Maybe I'd hallucinated the remark about moving to the general ward.

"Why don't you watch tv for awhile?" asked the nurse impatiently, plopping a remote in my hand.

I surfed around untill I heard the disembodied voice of Alex Trebec, hosting an episode of Jeopardy. The first question, or answer, refered to the sequel to Gone with the Wind. Scarlet. That's easy, I thought. But the second clue sounded like the verbal equivalent of a fractal, a Tower of Babyl showering me with abstract language that seemed to belong to some futuristic race, A new thought crossed my mind. What if I weren't dying but only brain damaged? I might not know all the answers to Jeopardy, but before that day, I could have at least understood the clues themselves. Suddenly petrified, I switched off the tv and attempted to do a cognitive assessment of my drug- washed brain.

When an attendant finally arrived to take me to my room, I realized that I'd fallen asleep again. So much for the mental exam. Still, sleep had become a reliable friend, for each time I woke I felt more like my usual self. My parents were waiting to welcome me to my new room but had to leave when Visiting Hours ended. After the constant flourescent buzz of the ICU, I was happy to resume my 48 hour nap in a quiet single room because each time waking seemed to bring with it renewed strength and focus. It was late when the bright hall light streamed into the room and a man wearing scrubs entered. I recognized the eerily intense features of the attending physician. He'd attempted to propspelitize to me as I was being prepared for anesthesia offering to pray with me. Giving someone the cold shoulder from the relative captivity of a hospital bed had proved a challenge but I'd managed it the first time around.
He must have been present when I bled out during surgery; perhaps he thought I'd be more receptive to his religious quackery following a brush with death. Asshole.

And what, you might ask, is a scared, sedated teenager with a wired jaw to do when a Jesus Freak masquerading as a doctor storms her hospital room in the middle of the night? Not much, though he's damn lucky I didn't have a loaded bed pan at my disposal. He proceded to pray aloud over the bed while I pretended to be asleep, palpably repulsed and seething at this insane intrusion.

The next morning I tried to convince my parents via furiously scribbled notes to have him fired or, at the very least, severely reprimanded. But because my story takes place in Alabama, everyone but me (that is, my parents and the nursing staff) thought it was "so nice" that an obvious lunatic had taken it upon himself to "pray with me" in the dead of night and I was in no condition to rat anyone out to Hospital Adminisration.

I later learned that I was given two units of blood to restore what had been lossed during surgery. My parents said the ICU nurses were glad to have me on the ward because they knew I was a temporary case. I would get well, in spite of the months of fatigue that would follow, exacerbated by the loss of blood and not being able to eat solid food. I drank protein shakes by the gallon. I pureed Christmass treats in the blender and nursed a fresh hatred of religious fanaticism.

It would seem that there are quite a few sick fucks lurking about in hospitals, and I'm not talking about the patients. Just before my jaw surgery a pretty young nurse attempted to convert me while drawing blood from my arm (now that's what I call multi- tasking! Ann Rice should be reading this). I thought it would ease her mind to tell her that I'd been baptized at nine, but I think she was a bit miffed that she hadn't gotten to me first.

And, years later a friend of mine told me of being accosted by researchers fishing for clinical drug trial participants- while en route to have open heart surgery for a heart attack.

Teenagers are among the most vulnerable patients in that they are less likely to speak out or take legal action in cases of negligence or breaches of policy. As a person with disabilities, learning how to advocate for myself restored much of my fearlessness. I have an extra reason to get tested regularly, though its been over ten years since the events of this story took place. My ambivalence towards the medical community has not diminished, though I'm trying to learn to hate the sin and not the sinner.

I can only hope that my late night visitor one day finds himself in a nursing home at the hands of a Wicken orderly, and that she will guide his palsied hand to sign petitions supporting the Freedom of Choice of Cojoined Twin Polygamist Lesbian Atheists.