Paul Glastris on the Disability Rights Movement

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In recent decades, some of Washington’s most contentious policy battles have revolved around identity politics, the notion that members of marginalized groups can be true to themselves and advance their interests only by embracing and asserting that which makes them different—be it their race, gender, or sexual orientation. But as the disability rights movement gained force in the late 1980s, Paul Glastris offered a dissenting opinion. Recounting a traumatic electrical accident he experienced as a teenager, Glastris made the case that some identities are best denied.

My memory of the days that followed the accident consists of short, vivid scenes accompanied by whatever I was thinking at the time. 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.

“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 fourteen-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. 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 had.

***

During my time at St. John’s Mercy Hospital, I slept as much as I could from nine to five, out of fatigue, of course, but also because daytime TV was a bore. Sometimes I was awakened by one of the 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 burns with surgical scissors. He worked on my arm and on the massive burn on my side. That burn 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 himquestions, 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. Wondrous scar tissue bubbled up to fill gaps and cover bones. Skin grafts—planed off my thighs—were then laid on top of the scar tissue.

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 breathe.

***

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. I’d sooner endure two weeks of debreeding baths than 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 thickheaded or perverse: dominating the scene was an image of Captain Hook. 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, strait-jacketed in twin prostheses, whimpering. The therapist would periodically and halfheartedly 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. I was not oblivious to the sometimes-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.

***

That first day, sitting in class and roaming the halls with my friends, all of us upperclassmen, was glorious. The invisible barrier between some of my classmates and me was palpable, but so too was my celebrity status. Within weeks, I turned my celebrity status into a winning race for student council.

I was determined to enjoy myself, to take part in any activity that interested me. One was the “advanced” 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 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.

Special treatment like that 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. 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.

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From “The Case for Denial,” December 1988. Paul Glastris is now the editor in chief of the Washington Monthly.

 
 
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