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Excerpted and adapted from Elegy for a Disease: A Personal and Cultural History of Polio (New York: St. Martin's Press, 2006)

At the age of sixteen I applied for a job at School House Candy in Pawtucket, Rhode Island. Although I had earned money babysitting, I had never held a real job. I was paid only fifty cents an hour, but since Susan worked at Trinity Square, I often babysat for the actors. On a Friday or Saturday night, they’d go out after the performance, not coming home until two or three in the morning. The kids would have been sound asleep for hours and hours then, and I’d have been getting paid while I did my homework—occasionally—or read books, listened to music, watched TV, or slept.

I’d make more than three times as much working in a factory, but even more important was that factory work was a real job, the sort where you knew from week to week the hours you were going to be working and the money you were going to earn. You had to provide your employer with a Social Security number. You could say to friends, “I’ve got to go to work,” or “I get off work at six.”

Every teenager in the Providence area in the 1960s seemed to have worked at School House Candy—even if only for a week or two. Perhaps there were jobs in the hidden recesses of the factory that required skills—mixing the chemicals and sugars and starches that went into the candy, maintaining adequate stocks of these ingredients—but the jobs high school kids got could be learned within minutes. Probably the newer you were at the job, the more efficient you were—you had not yet been demoralized by boredom nor had you figured out how to goof off while seeming to work. The pay was the minimum wage—$1.60 an hour.

School House Candy was located in one of the many brick buildings, vast and square, that dotted the landscape of Providence and Central Falls and Pawtucket. The red of their bricks had been muted by the layers of soot and grime that had accumulated over the decades. Their windows, too, seemed as if they had never been washed other than by rain, and were speckled with brown dirt. I imagine that this building—like most of the others—must once have been a textile mill, but the textile companies had all moved south, not just closer to where cotton was grown but farther away from the unionized workforces of the Northeast. By the late 1960s the former mills largely stood abandoned or had become factories where cheap costume jewelry was produced. A few others housed companies like School House Candy.

Working there was a rite of passage, an initiation into the world of work. From School House Candy one could move up to being a stringer, carder, or foot-press operator at one of the jewelry factories. My friends and my oldest sister described the scene to me. Down an endlessly turning conveyor belt would flow a river of one type of candy, perhaps lemon yellow lollipops—yellow lollipops, yellow lollipops, yellow lollipops, yellow lollipops, yellow lollipops, yellow lollipops. You stared at those yellow lollipops and thought you could never in your life be as sick of anything as you were of the sight of yellow lollipops. And then you would see that the yellow lollipops had been replaced by red lollipops. At first there would be relief. Something different to look at! And then, after a few minutes of watching red lollipops, red lollipops, red lollipops, red lollipops, red lollipops, red lollipops, red lollipops coming down the conveyor belt, you would find yourself longing to see something else, anything else—even a yellow lollipop.

Sometimes what came along the conveyor belt were Easter chicks, made of white marshmallow coated in yellow, three of which were to be placed on a white card and then sent on down the belt, where they would have black dots, representing their eyes, added to them. Farther down the belt they would be wrapped in plastic and the plastic sealed on both ends. They floated on down to the end of the line, where they were loaded into boxes, the boxes into cardboard cartons, ready for shipment. Sometimes the line flowed with other seasonal products, marshmallow Easter rabbits, ersatz chocolate jack-o’-lanterns, candy canes, hard candies in the shapes of Santa or reindeer or stars. Perhaps the candy was filled with preservatives, or perhaps the lack of any natural ingredients meant there was no possibility of deterioration. At any rate the lead time between the manufacturing of the candy and the holiday on which it was meant to be consumed was generally six months.

One day in July or August, a day when the temperature outside was in the nineties, and it must have been even hotter inside School House Candy, my sister Sandra came home from working there in a mood that mixed depression and fury, bemoaning the endless yellow marshmallow Easter chicks that had flowed along the belt that day, the sickly sweet smell of which clung to her hair and skin. I was in the bathtub when she got home, and she screamed at me, “Get out of the tub! I am so hot! I need a bath! Let me in the bathroom!”

Who bought those cheap candies? Even when I was a kid and had a palate that could politely be described as undiscriminating, I hated the sort of candy produced there. Its only salient feature was its sugariness, and it had too much of that. After a few bites of it, the cloying sweetness would make your throat sore. I suppose the candy was bought by people who had so little money they could afford nothing else, or those who felt forced to go along with the rites of Halloween, and grudgingly gave out the fake chocolate jack-o’-lanterns or witches’ hats made of artificially flavored black licorice.

I applied for a job at School House Candy, dutifully filling out the application. When I got ushered into the office for the interview, the man behind the desk was clearly embarrassed by my presence. When I try to call up the scene now, I cannot see his face, just a shiny suit of Dacron or Orlon, a no-wrinkle, drip-dry polyester shirt that had taken on a grayish sheen; a narrow necktie. He fiddled awkwardly with that narrow necktie, moving it back and forth between his index and middle fingers while he struggled to put together a coherent sentence. “Well, you know,” he said. He glanced up at the ceiling. “Your…your…you know…” He stopped staring at the ceiling and stared at a point above my head. “Leg,” he finally managed to say. “Leg.”

Then he said the word “Insurance,” and then, once again, he said, “Insurance. The thing is,” and at last he seemed able to speak, “the insurance company worries about these things. I would have to talk to them and get an okay from them.”

He told me he would check with the insurance company and call me back, and I actually believed him.

But of course he didn’t call me.

In the mid-1950s Hugh Gallagher, who had been disabled as a result of polio, seeking to fulfill a lifelong dream of attending Oxford, applied for a Rhodes Fellowship. Gallagher’s application was neither accepted nor rejected. It was simply returned to him unprocessed. When Cecil Rhodes established the fellowships, he had stipulated that they were to go to those who were “fit in mind and body.” Gallagher later learned that a special meeting had been convened to decide what to do about his application. The decision was made to act as if the application had never been received. Gallagher refers to this as a “very English sort of rejection,” but to me it seemed the way that disability discrimination often happened—obliquely, with an air of embarrassment and averted glances, the word “uh” punctuating the conversation.

How often I have experienced what I did with the man at School House Candy, who could not put a sentence together. In the face of disability, language itself becomes crippled. It trips over itself, it stutters, it becomes awkward, ungainly, even paralyzed. A little while ago my friend Susan, who had just come back from visiting her parents told me that her mother asked after me—although not by name. “What did she say?” I asked. “How’s your friend with the funny last name—Hand? Toe?” “No,” Susan said. “That’s not how she described you.” “Oh,” I said, drawing the word out and laughing. “How’s your disabled friend?” No, not that. “Handicapped?” I asked. “Crippled?” It turned out that Susan’s mother had said, “How’s your friend who’s—uh—uh?”

When I started writing fiction, dialogue came easily to me—I think because I was used to listening for what people were saying beneath their words. All my life I’ve had to understand how utterances sought to conceal as well as to reveal—and yet, inevitably, showed the very thing their speakers thought they were hiding. I had to finely hone my ability to hear what was beneath polite lies and evasions, to see the discomfort that people thought they were keeping secret.

I didn’t argue with the man at School House Candy, or with any of the other people who out-and-out refused to hire me because of my disability.

Having spent the day writing about School House Candy, I meet a friend for dinner. Pepper asks me how my day was, and I tell him I’ve been writing about work, about not getting hired at School House Candy, about the yellow lollipops and the Easter marshmallow chicks—he remembers those, and shudders—and the red lollipops, and the summer heat in the unair-conditioned factory.

“Honey, did you really want to work there?” he asks, laughing.

Well, yes, I did. And it wasn’t just that I needed the money, although I did need the money.

Getting out of working at School House Candy was a bit like getting out of gym class. All the other girls complained about gym: about the uniforms—ridiculous blue outfits with bloomers, something our mother might have worn in the 1930s; about the showers where the water was always too cold; about the drill-sergeant mentality of the gym teacher.

Once a week, the gym teacher taught a class called “Health and Hygiene,” which I did have to attend. When the subject was dental health, she had talked at length about her own dental work, telling us proudly that she had solid gold fillings, far superior to the ordinary amalgam generally used. She had then walked up and down the rows between the desks, her right index finger hooked into her open mouth, so that we could each in turn gaze into her mouth and see her dental work for ourselves. Another time she told us about a crippled beggar in Mexico who had asked her for money. Instead of giving him pesos, she had given him a lecture—it was impossible to imagine that she had deigned to speak in a language other than God’s own English—about laziness and malingering, and at the end of her lecture he had gotten up and walked! Oh, there was nothing really wrong with him—what these people needed was just a good strong admonition to pull themselves up by their bootstraps.

Did I want my own fusty gym uniform? Did I want the gym teacher to shout at me? Did I want to work at School House Candy and come home at the end of the day sweaty and exhausted and nauseated? Yes, I did. I wanted that chance, to complain and moan and hate along with everyone else.

I was not, of course, asking for what we would today call “reasonable accommodation” at School House Candy—for instance, a job that could be done seated, or even a stool on which I could perch while working on the line. Such a notion was unimaginable in those days. I applied for the job fully expecting to stand for my entire shift. Would I have been in pain at the end of a shift? Of course I would have been.

I did not know that anyone else had ever experienced the rejection and discrimination I was experiencing. I must have heard of Randolph Bourne, an opponent of World War I, whose book Youth and Life was considered the original manifesto of the youth counterculture. And I had read John Dos Passos’s sprawling trilogy, USA, in which Bourne was described as “a tiny twisted unscared ghost in a black cloak hopping along the grimy old brick and brownstone streets still left in downtown New York, crying out in a shrill soundless giggle: War is the health of the state.” Had I realized that the words “tiny,” “twisted,” “hopping” were Dos Passos’s way of describing Bourne’s disability—a facial deformity stemming from a “messy birth” and a hunched back caused by tuberculosis of the spine?

In his seminal essay, “The Handicapped,” published in the Atlantic Monthly in 1911, Bourne wrote of his quest for work:

I besieged for nearly two years firm after firm, in search of a permanent position, trying everything in New York in which I thought I had the slightest chance of success, meanwhile making a precarious living from a few music lessons. The attitude toward me ranged from “You can’t expect us to create a place for you,” to, “How could it enter your head that we should find any use for a man like you?”

With his family in straitened circumstances, Bourne’s need for work was acute:

There is a poignant mental torture that comes with such an experience—the urgent need, the repeated failure, or rather the repeated failure even to obtain a chance to fail, the realization that those at home can ill afford to have you idle, the growing dread of encountering people—all this is something that those who have never been through it can never realize.

I didn’t know that Randolph Bourne had been through what I was going through. I had read a lot about the Free Speech Movement at the University of California at Berkeley in 1964—credited with being the big bang that started the student movement. Had I read of Jacobus tenBroek, a leading faculty supporter of that movement? If I had read anything about him, I would almost certainly have known that he was blind, since any description of him would have highlighted this point. I wouldn’t have known that he had cowritten a text, Hope Deferred: Public Welfare and the Blind, in which he spoke of the restrictions on the lives of blind people as a civil rights issue.

I didn’t know that in New York in the 1930s, a group of disabled workers and would-be workers—many of whom had, in all likelihood, been paralyzed by polio in the 1916 New York City epidemic—found themselves deemed, by Roosevelt’s Works Progress Administration, as “unemployable.” They had organized as the League of the Physically Handicapped to protest such discrimination.

Sylvia Bassoff, one of the organizers, spoke of her experiences before she joined the group: “Well, I found I couldn’t get a job. Not because there was a Depression. I found I couldn’t get a job because I was handicapped.” She enrolled at a business school, and became a whiz at taking dictation and typing. “In my naïveté, I figured, ‘I’ll graduate from the Drake Business School and they’re all going to grab me.’…Well, nobody grabbed me….Some people who…got jobs…didn’t begin to be as good as I was.” Unable to get work in the private sector, she was humiliated at being forced to turn to a sheltered workshop run by the Brooklyn Bureau of Charities, where she was paid $3.50 for every thousand envelopes she addressed by hand. When a member of the league told her that it was organizing to get jobs for people with disabilities, Sylvia said, “Jobs? Anything to get out of here.”

The early members of the league had more in common than their identity as “the handicapped.” They were largely Jewish, from working-class families, the children of recent immigrants from eastern and southern Europe. Not only had they come from backgrounds in which education was highly regarded and the work ethic strong, they shared a radical political outlook. Coming from families and communities in which leftist ideology was predominant, they were used to thinking of social, rather than individual, solutions to problems. But while the New York Left—in which many of them had their roots—embraced their cause, they often did so in a way that further stigmatized people with disabilities. When the league was picketing the WPA, the Daily Worker described them as “dragging their own lame bodies back and forth,” bodies “twisted by infantile paralysis.” At other times they were described as “paralysis victims” or “helpless crippled people.” A headline in the Daily Worker played on pity when it declared “Brave LaGuardia Police Beat, Club, Jail Crippled Jobless.”

Shortly after Roosevelt himself became disabled, a friend of his mother’s asked, “Now [that] he is a cripple, will he ever be anything else?” Roosevelt was to spend the next decade of his life cobbling together an answer to that question—at first by trying to “unmake” himself as a cripple; later by creating the story of himself as a man who, through personal heroism and grit, had “overcome” his disability. And yet, when Roosevelt spoke of the necessity of creating jobs for the unemployed rather than simply giving them money, saying, “To dole out relief is to administer a narcotic, a subtle destroyer of the human spirit….We must preserve not only the bodies of the unemployed from destitution but also their self-respect,” his words reflect the experience he had finding his social identity taken from him in the wake of his disability. How ironic that these workers were being deemed unemployable by an administration headed by a president who would himself have been deemed unemployable by his own administration’s regulations!

No doubt many of those who had formed the League of the Physically Handicapped found employment during World War II, when labor shortages brought millions of people into well-paying employment: Rosie the Riveter is a familiar figure; so too is the history of the great internal migration, as black sharecroppers and tenant farmers moved from the South to war-industry employment in Detroit, Oakland, and Chicago. People with disabilities also gained entry into the workforce during the war. Robert Huse found work at Raytheon during that time; his coworkers were women who had never been in the paid workforce before, men too old for military service, and other disabled people. Employment did not mean accommodation, however: Huse got to work half an hour early so that if he couldn’t find a parking space close to the front door he would have time to hike across the parking lot. He noticed that others of his disabled coworkers were doing the same, and put a note in the company suggestion box: Why not set some parking spaces aside at the front for disabled workers? (It was never acted upon.) While wartime employment brought something of a reprieve from discrimination, it also brought with it the knowledge that what had been gained could be lost. When the war ended, would things go back to being as they had been before?

Huse had a coworker at Raytheon, a man with an amputated leg, who was also an alcoholic and had gotten fired for poor work. Later Huse saw him on the street in Boston:

His hair had turned almost white and came down over his ears. He was unshaven and filthy. Fanned out in his hands were several pencils and beside him was a battered pie pan, which held several coins…. “Take a good look, kid, because this is what happens to us.” That night, Huse had a nightmare that he was penniless and hungry, and searching for a street corner on which to sell his pencils. “On every corner the one-legged man sits and leers at me, I hurry by. His voice follows me, ‘You’ll be back, kid, you’ll be back…’”

If I had not been so mired in contempt for other people with disabilities, I might have talked to those around me who were similarly situated: a man who was part of the local civil rights movement and had cerebral palsy; a boy who also attended my high school, who had also had polio and walked on wooden crutches, toward whom I felt an almost physical repulsion.

Oh, the contempt I felt for my high school classmate! I do not remember his name, and I cannot recall anything about his face. What I do remember are those old-fashioned wooden crutches, which splayed out from his body. Pieces of foam rubber covered the tops of the crutches, where they were tucked under his arms, and also covered the grips. The sweat from his underarms and hands sank into that foam rubber, leaving them with a musty smell and a sunk-in grittiness that could not be washed away. (I knew both the smell and the grittiness, because I had once had such crutches.) My crutches were aluminum, and I had replaced the gray hand grips they had come with with brightly colored ones designed for a kid’s bicycle, with red and pink streamers coming from them.

It was vitally important to me that I not be seen with the other boy who had had polio. (I could make up a name for him, but let me leave that gaping hole of the name I don’t remember.) People might think we were two of life’s rejects, clinging to each other: or worse, they might think our companionship sweet, touching, poignant, and above all fitting.

I told myself I had good reason for my contempt. I did not hate him because he was disabled. I hated him because his shirt was always untucked. I had contempt for him because his mother picked him up after school—he was a spoiled baby.

My mother did not pick me up after school. I used to walk, along with everyone else, from the rise on the far edge of downtown Providence across the pedestrian mall—designed to make the experience of shopping there more like a visit to the suburban shopping centers that were springing up in Warwick and Cranston—to wait for the 52 Hope bus that would drop me at the corner of Hope and Larch Streets; from there I would walk two and a half blocks up the hill, passing Catalpa Road and Ivy Street and then letting myself in the back door of our house, so exhausted that I would throw my crutches and coat onto the living room floor and collapse on the couch.

The backpack had not yet become a common item—it was then used almost exclusively by hikers and the military—and so I carried my books in the green canvas bookbag my mother—like all Cliffies—had used at Radcliffe. I couldn’t, of course, carry it the way she had, her hand holding the loop and the bag resting on her back, since each of my hands was holding a crutch. I put the loop of the bookbag over my left shoulder and, as I swayed back and forth as I walked, the bookbag banged first against my crutch, then against my body, a metronome keeping its own off-kilter beat. Inside the bag were my textbooks—Ancient History and English, Latin I—year after year, Latin I, as I kept failing the class.

If I hadn’t been so fearful of other disabled people, I might have asked them how they had negotiated the surprisingly perilous journey into the world of work. They might have been able to suggest some strategies to me—or we might at least have been able to commiserate. And if I had not been so intent on protecting my parents from the effects of my disability, I might have talked to them.

But, like the man at School House Candy, embarrassed by my very presence as a job seeker, I, too, found myself unable to articulate a clean sentence. The words to describe what I was experiencing came to me singly, in isolation—“discrimination” … “unfair”—along with a sense of shame that I could not name even to myself, never mind to anyone else. The ideas that would become fully formed with the disability-rights movement were now feelings, sensations within my body; scattered, disconnected words, a sudden gust of shame that expressed itself as me hanging my head, cringing. I had a sense that my problem was a social one, not an individual one—but, having cut myself off from other disabled people, and knowing nothing of what those who had gone before me had experienced, I was unable to translate that vague sensibility into anything else. In short, I lacked both a history and a community.

After a few more experiences such as I had had at School House Candy, I called the Rhode Island Department of Vocational Rehabilitation—Voc Rehab for short—because it seemed that they should be able to help me. The man on the other end of the line explained that they would be glad to evaluate me, to give me a battery of tests, to train me for a job, but no, they could do nothing about helping me find a job, and no, they knew of no places that would be willing to consider hiring me. “Training,” he said again. “Training.” The word made me think of Mr. Popper’s trained penguins in a book my mother had read to us as children; it made me think of special-ed classes, which in those days were divided into those for the “educable mentally retarded” and the “trainable mentally retarded,” “trainable” being the lesser of the two. I wasn’t retarded, I wasn’t a penguin, I did not want to be “trained” for anything. Did I argue with him? Did I say, “What’s the point in training us if no one will hire us?” I don’t think I did. I think I muttered, “Thank you,” and hung up.

I ended up going back to babysitting. At thirteen I had felt thrilled to be left alone in a near stranger’s house: to play their records and snoop through their drawers, to leaf through their books. But at sixteen I was no longer thrilled at being left alone in a grown-up’s house; snooping had lost its appeal. I was more than ready to move on.

© 2006 Anne Finger

 

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Discussion Questions

1. The author doesn’t tell us many specifics about her disability. Did it surprise you that she didn’t? Why do you think she made this decision?
   
   
2. What does the phrase “reasonable accommodation” mean? How does it apply to people with disabilities? Could it also be applied to people without disabilities?
   
   
3. Why was it so important to the writer to have a “real” job?
   
   
4. Have you ever been excused from a responsibility that other people had to undertake? How did it feel?
   
   
5. Why does the author bring in the experiences of other people with disabilities, such as Randolph Bourne, Hugh Gallagher, and Robert Huse?
   
   
6. The author links her personal experiences with historical events, such as organizing by workers with disabilities to demand employment during the Great Depression and to expand employment opportunities during World War II. Why does she do this?
   
   
7. Were you aware that President Franklin Roosevelt had a disability? Have you ever seen a picture of him in his wheelchair? Do you know of other historical figures who had a disability?
   
   
8. Why do you think Robert Huse was haunted by the image of his former co-worker selling pencils on the street corner? Why did the author include this negative image of disability?
   
   
9. At several points in the piece, the author talks about people not speaking directly about disability—her friend's mother, who refers to Finger as ‘"...your friend who's—uh..."’; the man who takes her application at School House Candy; the author’s own inability to name what she is experiencing. How do these examples support the overarching theme of “School House Candy?”

 

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Listen to the Discussion Questions

 

Writing Activities

• Write about a time when you thought someone was avoiding telling you the truth. What did they do that made you sense this? How did you respond?
  
  
• The author speaks of changes in access to employment people with disabilities experienced during World War II, and also of organizing by people with disabilities during the Depression to obtain jobs. What kinds of social changes have you observed in your life? Have you played any part in bringing these about?

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