The great achievement of the disabled movement, a movement that seems to have reached a kind of apex, is its drive for changes in technology and public policy and public attitude that have integrated the disabled into mainstream society as never before. These changes have come at the insistence of the disabled themselves: they hunger for normality, as anyone who has ever known a disabled person can probably attest. Behind the obvious signs of progress—the sloped curbs and reserved parking spaces and reengineered public bathrooms—is a good deal of quiet lobbying and organizing. Sometimes the movement has turned to more public displays: this year’s protests at Gallaudet University or the wheelchaired veterans who periodically roll across the U.S.
Forging a movement for themselves may be the only way handicapped people as a group can advance their cause. But is that also true about individuals? I don’t think so. Indeed, I’ve felt quite strongly for a long time that there’s a harmful side effect to all this group consciousness. I can try to get at my concern by stating the movement’s paradoxical logic. It goes like this: the key to being treated as normal is to identify with the thing that makes you different. Or: empowerment and freedom come only if you highlight your physical limitations. Again, I think this is probably true for groups, given the way our interest-group-happy system works. But for the individual disabled person to identify with his handicap can be insidious.
The wheelchair Olympics, or “Paralympics,” for instance, seem sad to me. If normality is the goal, then isn’t competing as a handicapped person, against other handicapped persons, in a strictly handicapped event, exactly the wrong strategy? With a guitar, or a computer, or a chess board, or a pen, they might compete for real, against all comers, in the wider world, in the only world that matters. Out there on the basketball court, however, they prove nothing, they overcome nothing. They clearly enjoy the experience of competition; the audience chokes up with sympathy and admiration. But has the cause of normality been advanced? Not really. In the end, they don’t look to me, or to millions of others, I’m afraid, like real Olympic athletes, merely like a bunch of guys in wheelchairs playing basketball.
That sounds harsh, and it is. But it’s not meant as an argument against noble dreams. Nor am I insisting that they “accept” their handicaps. Indeed, they’ve already done so. They have shown the world, and accepted for themselves, an identity: “handicapped athletes.” That’s just what I find so troubling.
Acceptance of reality is generally thought to be a good thing. It could be considered evasive, even psychologically unhealthy, for someone not to acknowledge that terms like “handicapped” and “disabled” accurately describe their physical impairments, if in fact they do. You are what you are, no use fighting it. But fighting stereotypes and promoting normality is what the disability movement at its best is all about. The movement undermines itself by creating new identities for the disabled (wheelchair Olympian) that are still less than normal. The disabled who fall for this new identity risk missing out, it seems to me, on a better, fuller identity.
Let me try to illustrate with a story. It was one of those things that happens to me once every other week; had I not been writing this essay, I would never have remembered it. I left my downtown Chicago office, rode the elevator to Michigan Avenue, and walked—as, alas, so many disabled people cannot—on my own two legs, across the street to a sandwich shop to pick up some lunch. I work for a magazine, and my mind was happily engaged with facts, quotes, ideas, and sentences from a story I was writing. Aside from a homeless person who inhabits a sidewalk near my building, the people on the street all looked perfectly normal: women clutching parcels of overpriced clothing, construction workers eating boxed lunches, professionals in their crisp suits and raincoats flapping in the wind.
I must have looked like one of those typical young professionals to the two attractive young women sitting at a table near the door of the sandwich shop, assuming they noticed me at all. Presumably they saw a fellow in his late twenties, dressed in a suit, walk by and pick up a red plastic tray, holding it against his chest as he perused the sandwich bin. He would have had his back to them as he bent down to retrieve a chicken salad sandwich on black Russian bread, but then he would have turned around and walked towards them to the refrigerator where the beverages are kept. They’d have seen him prop the tray with the sandwich between his chest and the refrigerator while he opened the door with his left hand, when suddenly they’d see the orange juice bottle he was reaching for fall heavily onto the tray, knocking the sandwich on the floor. As he tried to hold on to the tray while backing away from the refrigerator, they would have seen the refrigerator door snap shut, pushing the tray against him and sending the orange juice bottle careening off a wall and landing in a wet crash on the linoleum floor. They’d have seen a manager walk quickly over, and while assuring him there was no problem, nothing to worry about, pick up the chicken salad sandwich and place it gently on his tray. As the young man stood by the cash register paying for his sandwich, the two young women may have noticed the way he kept his right arm rather stiffly at his side. And as he walked by them on his way out the door with his bagged sandwich tucked into his left arm like a football, they may have noticed a terrible scarring on his left hand.
I imagine the women were embarrassed for me—probably a good deal more embarrassed than I was for myself. Within 30 steps of the shop, I was back to mulling over sentences. The incident was no longer in my thoughts. A self-protective mental mechanism was at work, a trick of the mind I have trouble explaining but which is constantly operating. The image of a man with a strangely scarred hand, fumbling awkwardly with his food, is not the image of myself that I see in my mind’s eye. Back on Michigan Avenue, I am back to being just another guy on Michigan Avenue, special to myself for the ideas that occupy my mind but content to know that people on the street don’t give me a moment’s thought or a second look.
An early bloomer
At the age of ten, I entered a great new period in my life. Our family moved from Kirkwood, a sleepy old suburban township in St. Louis County, where I was perpetually bored, to a new house in the unincorporated western edge of the county. Our new subdivision was surrounded on three sides by adventure: wooded hills, creeks, overgrown fields, a horse pasture, and a pond. I thought I was going to lose my mind with happiness as I began to explore the place; my mother feared for her own sanity as I started bringing home pocketfuls of snakes and requesting permission to keep them in the basement. Unlike Kirkwood, the new neighborhood was filled with boys my age, so getting enough bodies to build a fort or to play a decent game of backyard football was never a problem.
I was what you would call an early bloomer. At the age of 11, muscles developed on my back and chest and arms and legs, giving me certain advantages over my bony friends. One of the rituals of seventh grade physical education was slinking to the top of the thick rope that hung from the gymnasium ceiling; I was one of the few kids in school who could climb it like a monkey without using my legs.
I had always been a mediocre athlete, but now suddenly I was competing well in any sport I tried: basketball, baseball, and my favorite, soccer, a major sport in St. Louis. I also wrestled, and the older guys on the school wrestling squad, having noticed my strength, would often choose me for a partner to demonstrate to the younger crew how various moves and holds worked-a mixed honor that involved getting my face rubbed into the mat by upperclassmen. My brothers and I joined the swim team at the pool of a nearby subdivision. We were newcomers to the pool and to the sport, and so usually brought up the rear. But we improved with the grueling practice. At the end of the summer before eighth grade, I won a third place ribbon in the breast stroke. More importantly, I was beginning to attract the attention of the girls at the pool. Had I an ounce of confidence or a scrap of information, I’d have done something about it.
Most of my free time, however, was spent fishing on the pond, plucking crawfish from the creeks, or turning over logs in the woods and chasing after whatever crawled or slithered out. There was always something interesting to do in the woods, even in winter. On one typical afternoon in February, at the age of 14, I headed to the wooded hills with my buddy Dave. At the top of the highest hill was an abandoned house. It looked progressively more derelict as the years went by, and my friends and I dismantled it, sometimes to scavenge building materials, sometimes for no reason at all. Nearby were what looked to be abandoned telephone poles that once served the old house. A snipped wire hung from halfway up one of the poles and spilled onto the forest floor, and at its base was nailed a metal insignia of the local phone company. The pole smelled of pitch. Staring up at it, I wondered if the insulators at the top might not bring a few bucks; I’d seen similar-looking ones for sale at a nearby antique shop. So up the pole I climbed, an easy feat for a practiced climber like me, especially with the help of the ladder-like stakes that stuck out from either side. Once at the top I could see the insulators, which held wires that hadn’t been snipped. I reached for one of the insulators with my right hand. I didn’t know that the wires were carrying 7,000 volts of live electricity.
The TV trooper
My memory of the days that followed consists of short, vivid scenes accompanied by whatever I was thinking at the time. There is Dave standing over me as I lay on the ground (“How unlike me to have taken a nap in the woods.”). There is the fireman with a pair of scissors, cutting my blue jeans from the ankles up, while assuring me that everything was going to be all right (“I can’t believe this guy’s ruining my favorite pair of pants.”). There is my mother standing in a hospital hallway as I’m wheeled past her on a gurney, her face showing suppressed emotion (Trying for a bit of reassuring humor, I blurt out: “Well, Mom, looks like I messed myself up pretty good this time.”).
Most of all I remember the towel the surgeon had draped across my eyes. I would drop in and out of consciousness, reemerging each time to find the damned towel blocking my view. I sensed the surgeon was a kind and understanding man, but his seemingly casual refusal to grant my repeated requests that he remove the towel struck me as patronizing. I was determined to assure him that I was brave enough to see whatever he obviously didn’t want me to see. In and out I went, feeling no pain, no panic, just sleepy and curious. At some point I awoke with a keen suspicion of what the problem was. (Months later I found out that the surgeon, Dr. William Monafo, had explained to me what he’d done, but I have no memory of his explanation.)
“Doctor, is my arm gone?”
“Yes, Paul .”
A long pause. “Can I see?”
Another long pause. Up went the towel. I lifted my head and looked around, as if emerging from a manhole. As I gazed at my right shoulder I remember thinking: “Hmm. How about that. Isn’t that interesting.” I had never seen human bone before, but there was a piece about half an inch wide, just below my shoulder, surrounded by a three-inch circle of angry-looking flesh. “Isn’t that something,” I thought as I lay my head back, feeling sleepy now. Before I dozed off, the towel came down over my eyes.
My 14-year-old mind was obviously engaged in some form of what psychiatrists call denial. Yet it wasn’t the classic refusal to admit the painfully obvious. From the moment Dr. Monafo lifted the towel and let me look, and throughout the days and weeks ahead, I accepted the fact of my injuries. What did not occur to me, what I did not think about, what I “denied,” were the ramifications. I had no dread about my future, no feeling of horror or revulsion or depression; the question, “Why me?” never occurred to me. It was not an act of conscious will on my part; my mind just naturally kept away from the fears and questions you’d expect I would have.
For the next six weeks, I did my best to cooperate with Dr. Monafo and his team at St. John’s Mercy Hospital. They worked on me for hours at a time, first just to keep me alive, then to get my body to heal itself. I experienced varying levels of discomfort, and sometimes mind-bending pain, but I complained very little. Apparently this wish to cooperate, and the accompanying “denial,” is not uncommon. “A lot of kids have this trooper mentality,” says a friend of mine, a surgeon who has spent time in trauma and burn units. “It’s amazing how goddamned tough they are. They have these awful injuries, and all they bitch about is not getting to see TV.”
He’s absolutely right about the TV. Throughout the ordeal, television was my friend. I kept it on constantly and was annoyed whenever someone turned it off. I was certainly given great loving care by extraordinary burn unit nurses. My mother and father were with me almost around the clock. For weeks the waiting room was packed with relatives, neighbors, friends of the family, priests and parishioners of our Greek Orthodox church. Armfuls of get-well cards and letters came to me. Every kid in my junior high school seemed to send one. A couple of girls I knew wrote every day. Letters came from people I’d never met. No human being has ever received so much love. It gave me great comfort. But not as much as the TV.
The TV and the drugs. At first it was morphine, in metal syringes. Morphine will make almost anyone a trooper. The first TV was a little black box, mounted on a flexible arm. This was necessary because I was in a gyroscope-looking bed with an electric motor that would periodically flip me lengthwise, from my back to my belly. I felt a little like a grilled cheese sandwich, but the bed kept away bed sores and facilitated dressing changes—a painful business that was always followed by dousings of watery silver nitrate and another shot of morphine.
Later I got a regular bed, a regular TV, and Demerol instead of morphine. But the routine stayed about the same. First thing in the morning the lab people came. They were extra nice, always chatting and joking as they worked, complimenting me on my bravery-part of the necessary con to get kids through rough times. The burns made the process of extracting blood difficult and painful. Needles had to chase elusive veins in my feet because there were none near the surface of my left arm; almost every vessel had been destroyed by the electricity. So had all the nerves and most of the muscle between my elbow and my wrist. What remained of my forearm was bone and a thin layer of muscle. Somehow an artery had survived the assault, and it kept life flowing to my left hand. Burned and without feeling or movement, the hand was nevertheless still there, and keeping it alive became the all-consuming task of Dr. Monafo and a hand surgeon named Dr. Carlos Papalardo.
After a while, I heard the joyous sound of short little footsteps clipping down the hall from the waiting room: my mother coming to feed me breakfast. I ate heartily: eggs, sausage, toast, oatmeal, juice, and to top it all off, a milkshake with protein powder. Burn patients need a massive amount of protein to heal. I consumed 5,000 calories a day, broken up into four meals. My stomach would sometimes rebel, and up the food would come. But I learned to shut my lips, shut my eyes, and swallow it back down.
I slept as much as I could from nine to five, out of fatigue of course, but also because daytime TV was a bore. Intermittently Dr. Monafo would come in, wake me up, lift my dressings and lecture to an entourage of young surgical residents who seemed to follow him everywhere.
Back to sleep I’d go, only to be awakened by one of those residents for a session of “debreeding.” This involved laying me in a tub of saline while the resident trimmed off layers of dead tissue from my bums with surgical scissors. He worked on my arm and on the massive burn on my side. That bum ran from the bottom of my rib cage to the top of my thigh, and from my navel to my back. The resident would ask me questions about myself as he worked. I’d tell him about school, friends, sports, the woods. I asked him questions, too, eager to be part of the process. I learned that electrical burns kill cells slowly; you have to keep peeling away the dead flesh over many days before you know how extensive the burns really are. By the end of the debreeding, my hip bone was showing, and the ridges of intestines were plainly visible under a paper-thin layer of tissue on my side. After that, though, the process reversed itself. All that eating produced wonderous scar tissue which bubbled up to fill gaps and cover bones. Skin grafts—planed off my thighs—were then laid on top of the scar tissue. Several years later Dr. Monafo would emplant a two-foot-square sheet of Marlex plastic to keep me tucked in.
Afternoon would find me back in my room with my mother. I’d sleep or talk to mom or watch game shows and wait for the good programs to come on. If a doctor came by for a dressing change, she’d grill him with questions. My father would be there in the early evening, as would a steady stream of visitors. My large extended Greek and Irish family is not a somber bunch. Sometimes things would get pretty festive in the unit. I’d happily take it all in, though my eyes would drift up to the TV. When visiting hours were over, the nurses would herd everyone out as if closing down a bar.
At night, the burn unit would grow quiet and the fluorescent lights would go off, and my room would fill with the blue light of the TV. The nurses would come by asking if I was ready for my pain medicine, but I’d hold off until my favorite programs came on. Several of the nurses made me feel like I was their favorite patient, and so became my favorite nurses. I’d tell them about school, friends, sports, the woods; they’d complain about their boyfriends and husbands. A couple of these sweet women began to worry that I was holding back grief at my injuries and warned my parents that if I did not break down soon, it would be psychologically worse for me later. The breakdown never came, though I did collapse in tears once when one of my favorite nurses stubbornly refused to believe my claim that the doctors had wrapped my dressings so tight it was painful to breath.
At midnight, I’d ask a nurse to put the needle in my thigh, just in time to catch “The Avengers” on the tube. Discomfort would recede, warm euphoria would sweep over me, and I’d lose myself in Diana Riggs’s stylish karate chops. By the end of the show, I’d have drifted off to sleep, my mind dreaming always of the same things: school, friends, sports, the woods.
The dream of getting back to my boyhood kept me buoyant in the hospital and filled me with excitement the day I left-thin, smiling, hardly able to walk. I gazed out the window as we drove home; the sky and the earth and the buildings along the highway seemed in super-sharp focus. Once home my parents and brothers helped me lay down on the couch in the family room. From there I could look out the porch window and see the wooded hills beyond the subdivision.
Poolside pride
As I convalesced that spring, my teachers would drop by the house for one-on-one tutoring. They also got a “squawkbox” hooked up between our home and classroom. I could listen in on lectures, and with the press of a button, pipe in with answers to questions. My classmates thought this was terrific; they decorated the squawkbox on their end with a hat and glasses and a little sign that read “Paul.”
With hard work and a lot of help from my parents and teachers, I made it through eighth grade. I was still at home the day school let out, but I felt the liberation and the beckoning of summer as keenly as anyone. My strength was coming back rapidly, and though my burns were not quite healed, I was soon back out in the woods with my neighborhood friends, stomping through the early summer undergrowth. That day I wore the burrs that clung to my jeans with extra pride, especially when I came home to find that two cute girls had dropped in to say hi. The pieces of my interrupted boyhood were falling rapidly into place; I saw nothing standing in the way.
I was, of course, deluding myself. The true ramifications of my injuries were still out there, waiting to be recognized. One day I went to the pool to watch my brothers in a swim meet. Full of innocent joie de vivre, I walked up to the poolside, eager to reclaim my territory. The gang of strapping young men and fetching young women greeted me almost like a celebrity. Then they fell back into their regular and seemingly relaxed poolside socializing, the kind that is really an intense, hormonally charged battle for status: flirting, clever banter, subtle flexing of muscles and tossing of hair. Sitting among the group I overheard the girl beside me complain to her friends about some tiny personal problem in that exaggerated manner teenage girls have. I listened, and looked down at the empty sleeve that hung from my right side, and the leathery, translucent skin on my numb left hand.
My soul quaked. The vanity and obliviousness of this girl was unbearable. Waves of insecurity and outrage swept over me. My presence there suddenly seemed pathetic. I went home that afternoon and bawled tears of misery and envy and rage, and from that day on, I avoided the pool.
War had broken out between my self-image and reality. My time in front of the mirror in my parents’ room began to increase. As I stood there assessing myself, I noticed the curious way my mind would go back and forth between the parts of me that were burned and the parts that were not. The burned patches looked ghastly indeed. But the unburned sections still looked okay. In fact, they looked better than okay; at 14, a man is amazed by his own masculine physique. Flipping from one to the other, I slowly came to realize that I really didn’t hate what was burned because it didn’t take anything away from what was not. I didn’t like it, but I didn’t hate it either.
Another battle in the war of my self-image ensued later that summer. My parents had been told that the best prosthetics work in town, and also the cheapest, was at the Shriners children’s hospital. Late that summer, I was admitted for a two week stay. I’m sure the well-meaning people at Shriners have brought hope and joy to thousands of young unfortunates, but I was not one of them. Recalling my reactions to the place, I am moved to hyperbolize: the word “gulag” comes to mind. I’d sooner endure two weeks of debreeding baths then relive the experience of Shriners hospital.
My negative reactions began the first time my parents and I sat in the waiting room. Murals on the wall illustrated characters from Peter Pan. Whoever had painted the mural was either thick-headed or perverse: dominating the scene was an image of Captain Hook. Later, we met our first and only lousy physician. After examining me for five minutes, he recommended we think about having my left hand amputated and fitted with a hook. More practical. Eliminates the chance of infection. Then he left the room. My father, teeth clenched, started talking about killing him.
Things went downhill from there as I began my two week stay at what is officially called Shriners Hospital for Crippled Children. The place made me feel like an extra in a Fellini film. Paraplegics, amputees, and sufferers of a whole range of horrible physical and mental birth defects were expected to live in affable harmony in the boys’ ward. Somehow I was not overcome by fraternal joy. One young fellow whose fingers had sort of melted together as a result of a burn accident tried to befriend me by suggesting we compare injuries. I couldn’t bring myself to reciprocate. When the ward staff organized a pitiful-looking kickball game outside, I stayed inside, in bed, staring at the ceiling and listening to rock music on the radio I’d brought in.
Horribly injured patients occupied the burn unit at St. John’s, too, but the difference in atmosphere was telling. The burn unit was geared to saving your life and making you well—a mission with which I was understandably eager to cooperate. But it seemed that the whole point of Shriners was to get kids used to the idea of being handicapped—a process that I found myself resisting with all my might. A capable prosthetic engineer did build me a sturdy arm with a hook at the end. On first sight of it my face flushed, but I put it on without a grumble. I hated the hook, but I liked the way the arm filled out my shirt.
I was less cooperative in the occupational therapy lab. I spent hours there with a somewhat sluggish therapist and a two-year-old, who, in addition to severe mental retardation, had been born with no arms, only fingers sprouting from his shoulders. The poor soul would sit among toys on a mat on the floor, straight-jacketed in twin prostheses, whimpering. The therapist would periodically and half-heartedly call out his name in a loud voice, vainly trying to get him to use his new appendages. Meanwhile she’d teach me various meager tasks I could do with my hook. I worked along, but without enthusiasm. She knew it, and subtly let me sense her disappointment.
My unpleasant experience at Shriners had one salutary effect: it revved up my desire to get back to normal life. The incident at the pool had clued me in both to the insidious quality of adolescent social life and to the invisible barriers that I might find in my attempt to return to it. But I felt I had no choice; I suspected the alternative looked a lot like life inside Shriners Hospital. School was about to start, and I was fired up.
The ‘A’ team
That first day, sitting in class and roaming the halls with my friends, all of us upper-classmen, was glorious. The invisible barrier I’d sensed at the pool was palpable between some of my classmates and me, but so too was my celebrity status. I wanted that barrier removed, and so I began what would become My Year of Overachievement. Within weeks, I turned my celebrity status into a winning race for student council president. By year’s end my administration counted among its achievements the acquisition of a soda machine, but in truth it wasn’t a very demanding job. Perks were its chief attribute. The council had its own office in which, between and sometimes during classes, the president and his friends could hold “meetings.” I also got to read the end-of the-day announcements over the school’s PA system, a power I occasionally used to humiliate those same friends: “Stewart Smith, please call your mother. Repeat, Stewart Smith, your mother called .”
I was determined to enjoy myself, to take part in any activity that interested me. One was the “ad-vanced” drama class. Theater is often a backwater activity in American schools, but at my junior high, the cool crowd vied for admission to this class because it was run by a dashing teacher named Tom Russert. Being admitted to the advanced drama class set up another battle in the war between my self-image and reality. In the end, it was a clear victory for my self-image: I dumped my prosthetic hook for a less practical but far more natural-looking mechanical hand. The decision annoyed the folks at Shriners, but that was of no concern to me. I felt only relief that the hook, and all the stares that came with it, were gone. I felt free to try out for a coveted part in one of Russert’s all-school productions: a Jacques Brel musical review (pretty sophisticated stuff for St. Louis county). I won a lead role and had the time of my life working with others. We performed for three nights to packed houses. Unless you were sitting in the front rows, or were watching very carefully, or knew in advance, you would not have noticed my injuries. Of course, virtually everyone in the audience did know that I was the kid who was lying in a hospital bed the year before. That’s the main reason-though I hope not the only one—why the applause I heard at the end of my solo number was the loudest of the night.
Theater and student government were wonderful areas to succeed in, but the tougher field, the site of my previous glory, was athletics. I wanted back in, bad. The only sport even remotely feasible for me was soccer. Fortunately, I knew the coaches. Chip Miller, an eighth grade teacher and a distant cousin of mine, commanded the second string “B” team; the head of the “A” team was none other than the drama coach Tom Russert. When I announced my intention to try out for the sport, my parents were not exactly overjoyed. Nor was my surgeon. Dr. Monafo just cringed and laughed nervously and shook his head. He had visions of my left forearm snapping like a twig or my intestines spilling out all over the frozen field. But I was insistent, and he and my parents reluctantly complied. I agreed to wear protective gear and to play only half the season, after which I was scheduled to be back in the hospital for more reconstructive surgery.
I enjoyed every moment of my half-season on Chip Miller’s “B” team. But I did feel the effects of the burns. With so much muscle missing from my left side, my left leg didn’t have much kick in it. Making the ‘”A” team seemed out of the question. Then one day, two weeks before my scheduled hospital visit, I found myself practicing with the ‘”A” team. A week later, I was in the starting line-up for a big game. My performance in that game—a couple of fine corner kicks and no major mistakes—was good enough to support the fiction that I deserved the slot. But I knew I was there because my coaches combined a little nepotism with a dash of affirmative action.
Special treatment like that, as long as it wasn’t too overt, didn’t bother me. I accepted the small favors—extra time to finish the cumbersome task of writing exams and papers, for instance—in the level-the-playing-field spirit in which they were usually offered. The favors gave me what I wanted: the opportunity to participate in the normal life of the school and to feel like the normal kid I knew myself to be.
Which is why it was so insufferable when the inevitable accolades started to fly about my having “overcome” my “handicap.” One day the principal called the whole school together for a speech on “true heroes” and the “hero” turned out to be me. I shrank in my chair. When the archbishop came to our church one Sunday and made me the subject of his sermon—his deep voice, with its refined Greek accent, repeating my name—I felt my soul crawling under the pews and heading towards the door. If someone chose to compliment me on my acting genius, or my political savvy, or my athletic agility, I was delighted to accept. I hungered for appreciation of my talents as much as anyone. But this was different. I was becoming everyone’s example of the indomitable human spirit, and I hated it. The adults—it was always adults—who came up to me and expressed their sincere pride in the way I’d “overcome” my “handicap” didn’t mean to embarrass me. They couldn’t have known that I had not mentally incorporated those words into my identity, that my mind was busy building the self-image of a totally normal kid, and that those dreaded words were like floodlights turned on my injuries.
Ozark mountain boy
In TV movies about the disabled, there is always a scene where the protagonist finally succeeds at a feat he thought impossible and erupts into hugs and tears with the therapist who never lost faith. Sorry, folks; maybe I’m different, but to me the process of learning new ways to cope with the physical world contained all the emotional and dramatic intensity of a handyman fixing a toaster. One steadily, incrementally, figures out how to do things. I could usually tell—even if others could not—which tasks were beyond my abilities and which I could expect to master. I would proceed toward the latter with the relaxed singlemindedness of someone who doesn’t have doubts about the outcome. We’re talking pretty basic stuff here, stuff I was used to doing myself: opening doors, zipping trousers, eating, writing, picking up objects off the floor. As I conquered all these tasks, I never experienced a feeling of triumph, merely relief.
Occupational therapists remained quietly disappointed at my refusal to use my prosthetic arm for much of anything beyond decoration, but I was convinced the device was largely useless. My other hand, on the other hand, seemed to me much more promising, even though it had no working nerves, almost no movement, and fingers frozen in place by metal pins in the knuckles. I was forever being offered ideas for gizmos that could be strapped onto my hand, or modifications that could be made to clothing, pencils, forks, and other artifacts of daily life. But I accepted only a few, and even those I usually had to design myself. My strategy was minimalist. I wanted to be able to move around the world freely, not be limited in range by a dependency on doodads and modifications that wouldn’t always be there.
This strategy was not foolproof; some aspects of the world took longer to adapt to than others. Smooth door knobs, for instance. I’d often fumble with certain knobs at school for a minute or so before they’d turn. Sometimes they wouldn’t turn at all. So I’d lean against a nearby wall and try to look nonchalant. When someone would eventually come through the door, I’d sneak through after them.
I wasn’t so self-conscious that I couldn’t ask for help now and then, especially from my friends. (They would often figure out what was needed before I’d have to ask.) But I tended to avoid situations where I felt too dependent, such as the lunch room. The physical tasks (securing a tray full of food, getting money out of my pocket) combined with the social pressures (who do I sit by?) seemed not worth the effort. So that last year of junior high, and for the next three years in high school, I spent my lunch hours in the library. I had never been a great reader, and during all those lunch hours in the library I never read a book through to the end. Rather, I’d flip through books, hundreds of them, concentrating on the sciences and natural history. A few pages, a paragraph, even a photo would usually be enough to send my mind off into a daydream.
I was finding that with my injuries came a certain separation from physical surroundings. Quite literally, I no longer felt anything when I touched it with my fingers. I fought this tendency, this separation, but it was an existential fact, and it had its effects. More and more, I found that I was living in my mind. And enjoying it. One of the keys to living well with physical affliction, I think, is the ability to be delighted in the company of one’s own thoughts. Those physical activities I could still do became special, and I experienced them more mentally than before. I was not asked to do housework; indeed, my mother, not wanting to produce sibling friction, wound up taking more of the load herself than she ever intended. But I could still mow the lawn, and a dreaded Saturday ritual became enjoyable. I liked the exertion, the sweat, the smell of the cut grass, and the chance to daydream. (Pushing the mower was one thing my prosthetic arm was good for.) My brothers and I always had summer jobs working for my father’s advertising agency. But while my brothers handled the office machines, I became the copywriter, working up radio ads for restaurants and car dealers.
The tendency to turn inward also changed my high school life. Experience told me that I could not play soccer well enough to compete at the high school level. So while my athlete friends spent their afternoons on the field or in the gym, I was out in the woods, sometimes with Dave, sometimes by myself, identifying plants with Peterson’s Field Guide. A high school fellow without a sport can maintain his social place only with great effort, and I was losing my taste for the struggle. I began hanging around a more thoughtful set of friends, people who felt a certain alienation from high school. A B-minus kind of guy up until then, I started taking advanced placement courses and actually doing homework. My grades soared. But while I willfully lashed myself to books, my thoughts often dwelt on the one thing that offered more immediate liberation: a driver’s license. It was not clear to everyone that driving was in the cards for me. I had some small doubt myself, and so ran the idea past a friend who had wisdom and experience in these matters: at 15 he had been arrested for smashing his father’s car into a tree. “No fuckin’ problem,” he advised. He insisted I forget about the driver education films that caution that one must steer with both hands: “I cruise with one thumb on the bottom of the fuckin’ wheel.” That removed any trace of doubt. Soon, I was out in an empty parking lot with my father, behind the wheel of his Matador station wagon. Earlier I stated that my efforts to cope with new tasks were never dramatic, but I must make one small exception. There was a moment when the Matador was headed at moderate speed toward a brick wall, and my father was not fully convinced that I would make the turn. But I did, and he let go of the dashboard. Soon, I had a license in my pocket, and the Matador was taking my friends and me on backpacking trips in the Ozark mountains, for late night coffee at the local Denny’s, and to triple features at the I-44 Drive-In—where, sitting on the hood, drinking beer and smoking dope, I would feel grateful that my father had shown such faith in me.
He and my mother continued to show faith, even when senior year rolled around and I shared my desire to go away to school. They gently raised the obvious concerns, but only once, and I brushed them off. Like any normal high school senior, I wanted to get the hell out of town. I saw no reason to fret about potential future problems, in part because the present was terrific. It was another Year of Overachievement. My continuing involvement in drama was paying off: I played the lead in one production, and directed another. My time in the woods paid off: I won a St. Louis Science Fair trophy for an ecological experiment I conducted. My summer career as a copywriter bore fruit: I wrote and delivered the winning speech in the competition for commencement speaker. And I was especially pleased with the outcome of the final battle over my self-image: her name was Lynn, and she was smart, blond, and beautiful.
A democratic dashboard
Of all the common words borrowed from psychology, few have such negative connotations as “denial.” It suggests self-delusion, self-repudiation, pathological dishonesty—conditions best treated by confrontation, by rubbing the victim’s nose in the ugly reality, for his own good. But is it possible that denial can sometimes be a good thing? And that “treating” the condition by “confronting” it might sometimes be a bad thing? I obviously think so. A trick of the mind that is some variation of denial has allowed me to live quite successfully and happily for 15 years.
The denial is easier for me, I suspect, than for those who first meet me. I see the look on a person’s face when he offers to shake hands and gets in return something stiff and scarred. So what is one supposed to do in that situation? What I try to do is draw the person’s attention away from the affliction and towards whatever we’re talking about. I don’t use funny one-liners to put people at ease; that requires too much self-consciousness. I don’t offer to explain how I got injured, not the first time I meet someone, or the second time, or the third time, unless they ask. I’ve known people so polite they went years without asking. It’s not as if I mind tell-ing the story; I don’t. (I’m certainly telling it at great length here.) But in my day-to-day living I don’t want an issue made of something I prefer to ignore.
Sometimes that means accepting the fact that the rest of the world doesn’t always want to play my game. People are curious, they want to help, and to refuse them is to make an even bigger issue out of it. I find it sad the way others with physical afflictions sometimes snap at passersby who try to lend a hand. It’s an inappropriate use of pride. Every day strangers offer me unsolicited assistance. If I don’t want help, I casually say, “No thanks, I’ve got it.” If they insist, I accept with a thank-you that is only partially insincere. They’re just trying to be nice, for chrissakes. When I really do need help, I try to ask in a got-a-match tone of voice. Nice and easy. No fuss. And it works. People actually seem to enjoy helping. I’m their good deed for the day. With the assistance of this civil infrastructure I can go anywhere and do as I please. I’ve seen most of the U.S. and traveled on my own in foreign countries without feeling insecure. All this politeness has no doubt warped my view of humanity into a rosier one than is probably warranted. But the fact is people almost never turn me down.
Even my family and friends have a hard time controlling their urge to help. I remember being at a bar with a friend in college who insisted that I could play pool with him. My protests went unheeded as he pulled a knife from his pocket and fashioned an ingenious device out of a plastic beer cup. With the device I could support the cue tip in my prosthetic hand, my other hand holding the butt end of the cue with the aid of my friend’s shoe string. The get-up worked, sort of. At a party a while back, my wife, Kukula, and I met another old friend of mine, a person who on previous occasions had struck Kukula as cold and insensitive. But as she watched, my friend reached for an hors d’oeuvre I’d been fumbling with and tenderly popped it into my mouth. My wife’s heart melted. She too has had to learn to hold back, though in certain areas she refuses. I’m not a bad cook, for instance, and I rather enjoy it, but the sight of me chopping onions with a paring knife in my mouth is more that she can take. She prefers that I “supervise” while sitting in the “husband’s chair.”
Denial has been my strength, but it masks a weakness. I live happily with injuries that would make most people wince, yet I wince when confronted with those dreaded words: “disabled,” “crippled,” “handicapped.” A whole movement has sprung up to defend and advance the cause of people like me, yet whenever I see the movement coming, I run the other way. Except once. In high school I accepted an invitation to join a support group of former burn-unit patients to counsel others who were still in the unit but having a tough time. In my role as counselor, I sat in the unit with a deeply depressed middle-aged laborer whose burns might or might not have threatened his livelihood. I left after our half-hour chat and never went back, convinced that I had nothing to offer a guy so caught up in self-destructive self-pity. In fact, he needed precisely the kind of help I had to give. I was simply afraid of the role I was playing, afraid of being associated with someone who was beginning to think of himself as disabled, afraid of what would happen to my carefully crafted identity as a Totally Normal Guy.
That fear of associating with disability is the dark side of my denial. But the disability movement shows a dark side, too, when it perpetuates that fear and fails to recognize the healthy side of denial.
A few years ago I found myself in Washington D.C. traffic court with an embarrassingly large debt of parking tickets. Someone had told me that one could get out of paying them just by showing up and pleading guilty. So there I stood, in line with everyone else: lawyers, truck drivers, housewives. (There’s something democratic about traffic court, though one can experience the same thing a lot more comfortably at a baseball stadium.) When my turn came, I handed my forms over to the bailiff. Noticing my injuries, the judge informed me that I could avoid receiving such tickets in the future by displaying on my dashboard a handicapped parking permit, forms for which were available in a room down the hall. I thanked His Honor, and responded that I knew about these permits but felt uncomfortable displaying them. The judge said he understood my discomfort, but that if l chose not to utilize my right to display the sticker, he was under no obligation to dismiss the charges this time, or next time. I thanked the judge again and pulled out my checkbook. He had made the right decision. So had I.
