It Duthn’ Theem Fair

The Sills family was marked by disease and degeneration, and being born into such a family gave Norman’s life a bleak prognosis. His mother and her two brothers had muscular dystrophy, and all three died of heart attacks. One of Norman’s sisters also had muscular dystrophy (which was later passed on to one of her children), and another had an intellectual disability. Norman, the first son, struggled for three years in a rural school. When the family moved to Great Falls, he was placed in Special Education, which he attended until age twenty-one. At one point his aunt took him to a medical specialist, who confirmed her suspicions: Norman, too, had muscular dystrophy, a progressive disease that gradually makes the muscles weaker and the joints less flexible. If the disease begins to weaken the cardiac muscle or the muscles used in breathing, it can become life-threatening.

You could see the effects of Norman’s muscular dystrophy in the muscles of his face, which was long and narrow. The bottom of his face seemed weighted down: his chin sagged, and his lower lip not only dipped sharply in the middle but also jutted out from his face. As it filled with saliva, it resembled a long water trough, which frothed slightly when he spoke. He had drooping eyelids and a tall nose. The front and top of his head had only a few strands of black hair remaining, while the hair on the sides hung limp and dirty. Unless he made a conscious effort to hold his head up, the feeble muscles of his neck let it slump near his chest.

Norman was thin but not lean, for his muscles were soft, with little muscle tone. He was of somewhat less than average height and weight, though his stomach was becoming ever more prominent. Sluggishly he moved about the Center, trudging from workfloor to lunchroom, lunchroom to workfloor, ad infinitum, resigned to the tedious but obligatory routines of life. There was no place he was eager to get to. He looked drained, like a middle-aged man worn out by life, though he was only twenty-five. The best was past, he knew—and the best was not very damn good—but there was nothing at all ahead.

In 1977, Norman was subsidized in a Special Education work-study program. He worked as an aide at a preschool and received a good, steady paycheck. Sometimes, though, the kids were more than he could handle, and he’d have to use physical force to control them. The school let him go, and soon afterward he came to the Center for a thirty-day work evaluation.

During this period it became clear that he was not ready for competitive employment. He was assigned to Division I, and after a year moved up to Division II. Later, when the glass contract began, he spent several months on a combination steelwooling/packing crew I was supervising.

He was a slow but reliable steelwooler, and he and Neal were the only packers I had then who could wrap the glasses that had stems and bases. The packing, at that time, was done in a small room off by itself. Other clients, when they finished packing a box, would come get me, so I could show them what I needed next. Norman, however, would remain where he was, standing silently beside his box, waiting until I happened to return from the steelwooling area. I encouraged him to come get me as soon as he completed a box, and after a while he started doing that.

He’d walk up, then stand beside me like a vulture, silent and watchful, waiting for me to ask if he had finished packing his box. Soon, however, I stopped doing even that; I wanted him to initiate the conversation. “I un,” he’d finally say, the sounds clouded by his nasal speech and his trough of sticky saliva.

I thought he could do better. “What’s that, Norman?”

“I’m done.”

“Okay, thanks for letting me know. I’ll be right in.”

Norman would never be easy to understand, but I felt that the less I asked of him, the less he would do, and his speech would deteriorate as surely as his muscles.

The only person I ever saw who could bring Norman to life was Emma, a plump, red-cheeked client. Neither of them spoke much to anyone else, but when sitting together they’d smile and talk ever so quietly. Norman would say things that made Emma laugh, and their normally expressionless faces would glow. Emma was a Division I client, however, and even after the divisions were eliminated, she worked in the Sewing Department, so most of the time she and Norman were in different meetings, lunches, and work areas. In 1979, hoping to get a driver’s license so he could take her out on dates, Norman had attended driver’s education classes. But with an IQ of sixty-eight and the reading skills of a second grader, he never got past the written test.

Norman was a member of the Great Expectations Band, a local brass-and-percussion band made up of about two dozen current and former Special Education students. Occasionally they traveled out of state for performances, sometimes going as far away as Kansas City or Chicago, and several times a year they gave performances at local schools. On those days Norman would come to work wearing a white shirt and black pants, which, together with his dour visage, made him look like a mortician. Norman played the bass drum, a large drum that produces a deep, resonant sound. Perhaps something about its low-pitched reverberations appealed to him, for he remained in the band long after he left school. The drumming mortician—that’s something I would love to have seen.

Norman had his first Client Progress Meeting following his thirty-day evaluation period. After working as a preschool aide, he saw the Center as a step backward and said he wanted his old job back. His case manager suggested that this was not realistic, given his present abilities.

At subsequent CPMs, Norman would sit silently. What was the point of speaking, he must have felt—what would it change? Instead, his father would speak up, upset about the length of Norman’s hair, saying he didn’t want his son looking like a hippie. Mr. Sills kept his own hair cropped close to his head, and didn’t see why Norman couldn’t do the same. Norman lived in a trailer with his father, who was an alcoholic.

One time when he was on my crew, Norman had a Client Progress Meeting early in the afternoon, then came back downstairs to work. I asked him how it had gone.

“Na ver oo.”

He said it so quietly, I wasn’t sure I had understood him. “What’s that?”

“Not very good.”

I had never heard any expression of feeling from him before. Usually when I asked him how things were going, he just said okay. But that afternoon he talked off and on for almost an hour. A lot of feelings were festering inside him, but he wouldn’t force them on me; I had to pull statements out of him, one by one. There were long pauses between most of them. He was packing glasses at the time, and I had to leave every few minutes to check on the steelwoolers. Norman spoke in a weary monotone, and most of what he said was slurred, and had to be repeated. Even then, there was quite a bit I couldn’t understand. What I’ve recorded here are all the statements I was able to make out.

I asked him what was wrong with the meeting.

“It wath juth the thame old thing, juth like all the otherth.”

“How do you mean?”

“They alwayth thay the thame thingth: ‘Ur doing good work, Norman, but ur productiv’ty ithn’ high ’nough to get you another job.’”

“Well, you have a job here, don’t you?”

“No, I don’ think thith ith a job.”

“Why not?”

“’Cauth, you can’t make any money here…. I uthta make $187 ev’y two weekth at the nurthry thcool. Here I only make about $20 ev’y two weekth…. The moath I ever made here wath $34, an’ one time my theck wath only $3.37.”

“If you got your productivity up, your checks would be bigger, wouldn’t they?”

He shrugged his shoulders. “I gueth.” He was tired of hearing that. We both knew that working at the Center, he could never make anywhere near his former earnings.

“What about the work itself—do you like what you do here?”

“Ith boring. You juth do the thame thingth over an’ over.”

“That’s pretty much true in any job, isn’t it?”

“I liked working at the nurthry thcool. I liked working with the kidth. They were alwayth doing thomething funny.”

“What happened to that job?”

“I don’ know…. It ended…. I had to come here.”

“When was that?”

“January 1978.”

“Do you like steelwooling at all?”

“Ith okay.”

“How about packing?”

“Ith okay.”

“Which one do you like more?”

“Packing.”

Packing did provide a break from the monotony of steelwooling and did call for more thinking, but still this answer surprised me. When I asked other clients to come pack, they usually jumped right up. But whenever I asked Norman, he’d place his glass on the table at the same deliberate speed at which he did everything else. Then he’d rise slowly and trudge into the packing room.

Something else surprised me: hearing a client recalling specific dates and dollar amounts the way Norman did. To me it suggested considerable awareness on his part, and an understanding of the importance of numbers in his own life and in the world.

Late in our conversation, Norman talked about the Work Preparation program. This was another program offered by the Center, but it was separate from our program and had only a few clients at a time. The Work Preparation clients did not have intellectual disabilities, but had had trouble either getting jobs or keeping them. Usually these clients came for ninety days; then the Center was sometimes able to place them in regular jobs. Norman was the only client I ever had who mentioned the Work Preparation program.

“When I came here, they thed I had to be at the Thenter firth, an’ then I could get another job…. I wath only th’pothed to be here thirty dayth, an’ then they’d get me a job out in the commun’ty….

“Work Prep’rathun ith where the jobth are. Onth you go there, they plathe you in a real job….

“I don’ know why I’m not in Work Prep’rathun,” he said to me near the end of the day. “When I thtarted here, they tol’ me you had to go through Divithun I an’ Divithun II ’fore you could get into Work Prep’rathun. But thath not twoo. They let people go thtraight into Work Prep’rathun now…. I don’ unnerthtan’ why they won’ let me in.”

I was stunned by Norman’s outpouring, stunned by the bitterness and aspirations of this stone-faced man. I never heard anything similar from any other client.

So much about Norman’s life was depressing—his home life and his social isolation, his low energy level and his deep-seated discouragement, his job prospects and his health. He thought the deck was stacked against him, and he was right. All he could do was wonder why.

“Companieth come to Work Prep’rathun when they want people. You have to be in Work Prep’rathun to get plathed. But they juth keep me here, doing the thame boring jobth. Then they thay the thame thingth, over an’ over, at my meetingth: ‘Ur productiv’ty ithn’ high ’nough, Norman.’ But other people get to go right into Work Prep’rathun, an’ then they get them jobth. It juth duthn’ theem fair.”

A postscript: Norman died in 1990, eight years after I left the Center. The cause of death was respiratory failure resulting from muscular dystrophy. He was thirty-four years old.