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Nshima & Curry



Melvin's  Blog

Nshima & Curry


From Public Opinion, Chambersburg, Pa., Saturday, August 8, 1998.


Autism stole her voice, but not her spirit

By Melvin Durai, Staff Writer

She works in a small, bright room, facing a wall, secluded from most people in a Chambersburg workshop. Her squeaks and squeals would disturb others, might even startle them.

She’s 38 and can’t tie her shoelaces, can’t write her name, can’t force a word through her lips.

But she can outwork everyone in this room, can probably outwork many others in this special workshop, where people with disabilities showcase their abilities.

Few people see how hard Stacy Sweeten works, how she moves steadily from task to task, how her hands seem programmed to automatically push a button on a communication machine, playing a recorded message: "I need work."

Stacy loves to work. When the bell sounds, signaling a break or the end of her day, she often has to be reminded to stop. When she’s sick and can’t go to work, she screams.

"Stacy is an employer’s dream," says her supervisor, Trudy Wesley.

Stacy doesn’t work for the money. She doesn’t even see her paycheck. She might tear it up or toss it in the trash like a candy wrapper.

No one knows for sure what’s going on in her mind, a mind controlled by autism, a developmental disability.

Does she know what’s happening around her? Does she know why she works here? Does she know why she lives with another family?

She may not know any of that, but she somehow manages to live a normal life.

As normal as it could be.

* * *

To the outside world, Stacy may seem strange, but in her small world, she’s not much different from a lot of people.

All her co-workers at Occupational Services Inc. have some sort of disability – mental, physical or both. Some need wheelchairs and walkers to get around. Most are retarded and can’t read the numbers on their paychecks.

"Out on the street, people look at you, but here, they’re used to it," says Lori Piper, 31, a worker who suffered brain damage in a 1991 car accident and uses a walker. "They figure everyone has got a little problem."

OSI, a nonprofit company founded in 1957, accepts their disabilities and values their abilities.

"For a lot of them, this is their life," says Linda Mayo, manager of OSI’s rehab department. "If we didn’t exist, they wouldn’t have a whole lot in their lives to feel worthwhile."

Stacy and her 167 co-workers are technically considered clients, not employees. A 30-member staff counsels, trains and supervises them, helping them improve their work habits and behavior.

The two-story building on Redwood Street, near downtown Chambersburg, is divided into 10 work centers. OSI does subcontract work for more than 15 companies, including Food Lion, TB Wood’s Inc. and Fresh Express. Depending on their abilities, workers do simple tasks such as cutting radishes, labeling food trays and packing car parts.

They are paid a piece rate: Their output determines their wages. They earn as little as 25 cents and as much as $7.50 an hour.

In 1997, Stacy, who’s at OSI six hours a day, earned only $1,211, partly because she often ran out of work.

In a recent week, she made $3.56 an hour. The other six people in her room, all mentally retarded, made between 93 cents and $2.56 an hour.

The room is called the maximum assistance center, or max center. The seven workers, seated at tables along the walls, need plenty of attention.

Wesley, the supervisor, tries to keep them busy. Stacy gets agitated when the others talk to her or touch her. Her squeaks get sharper and louder, piercing the walls.

"Leave her alone," Wesley says. "Let her work."

* * *

Stacy hasn’t said a word since she was 2.

She started to speak at about 14 months and was beginning to form simple sentences. Then her words just disappeared.

"I thought she was unusually bright," says her father, Wilbur Sweeten, a retired military officer in Melbourne, Fla., who visits her once or twice a year. "She started to speak rather early."

Autism, which affects about 400,000 people in the United States, interferes with the development of the brain. Stacy and other autistic people have trouble communicating, reasoning and socializing. They can’t relate to the outside world.

They may exhibit repeated body movements and unusual attachments to objects. They like routines.

As a child, Stacy had eating disorders. Her father remembers her eating rubber bands and string. She’d eat only a few types of food, such as hamburgers or cookies.

Her memory often surprised him. Once, he took Stacy to a dentist and then admitted her to a hospital for further treatment. The next year, after a routine dental visit, Stacy prepared to go to the hospital, holding her teddy bear and motioning to the door.

She’s sensitive to loud noise and other sounds. During fire drills at OSI, she covers her ears with her hands and contorts her face. Sometimes she does this for no obvious reason, as though she hears sounds others don’t.

When Stacy was 21, her parents, who once lived in Franklin County, put her in a Selinsgrove mental institution. She learned to work there, operating a machine in the institution’s workshop.

"She’d get frustrated because the machine was too slow," says Carol O’Hara of PA Mentor, a family living program. "It couldn’t keep up with her."

In 1993, under a national plan to integrate mentally retarded people into the community, Stacy returned to Franklin County. PA Mentor placed her in a foster home in Pond Bank.

Using Stacy’s disability payments and paychecks, PA Mentor pays her foster mother, Amanda Bumbaugh, for room and board and other expenses.

Stacy rides to work in a county van.

"She’s made fantastic progress," O’Hara says." Initially, Stacy wanted to work 24 hours a day. If she wasn’t sleeping, she wanted to work."

* * *

At 8:15 on a recent morning, Stacy steps out of the county van, toting a blue lunch box.

She trots into the OSI building, then dashes down a hall, as though it’s a race. No one knows why she’s running. Her shift doesn’t start for 15 minutes.

"Everything is rush, rush, rush for her," Wesley says.

Stacy leaves the lunch box in her locker outside her room, grabs a red plastic cup and runs back down the hall to the bathroom.

A few minutes later Wesley tells Stacy to go to the cafeteria until her shift begins. "Ee," says Stacy, taking a step toward the cafeteria, before looking back, her face twisted in confusion.

Wesley repeats the instruction, as she often has to.

"Eeee," says Stacy, heading to the cafeteria.

She sits at the end of a long table and twirls her bangs with her right hand. She emits a whirring sound, tilting her head back and gazing around at several other workers. She tightens her facial muscles, pulling her cheeks back, squinting and exposing her upper teeth. It’s an expression she repeats often, almost like a tic.

She could be smiling, but it’s hard to tell. Her face and eyes seem to convey a little confusion and fear.

* * *

Stacy spends a good part of her morning sticking labels on plastic foam meat trays for Food Lion.

Wearing a hair net and rubber gloves, she works at a steady pace, humming and squeaking and nodding her head. She sits awkwardly, her legs folded on the chair.

A retarded woman beside her makes kissing sounds at her. Stacy returns the gesture, smacking her lips loudly.

When Stacy finishes labeling the trays, she immediately pushes a button on her communication machine, playing the recorded message: "I need work."

The machine, a Zygo Parrot, has 16 buttons, some with pictures to guide Stacy. She uses it to make several requests, including "I need to go to the bathroom’ and "I need a drink."

She’s the most versatile worker in the max center. Her jobs today include labeling pipes for Beck Manufacturing and packing rubber couplings for TB Wood’s.

Wesley tries to keep her crew busy, but runs out of work. They spend part of the day doing puzzles, staring at pictures in magazines and talking.

Stacy’s schedule is dotted with routines. She seems to like that.

"She’s happier that way," her father confirms.

In the cafeteria, Stacy sits at the end of the same table every day. She devours her lunch – a bologna-and-cheese sandwich, an orange, and small bag of cheese curls – like it’s another job she needs to complete quickly.

She tilts her head back and pours a bottled grape drink down her throat. The 8-ounce drink disappears in three gulps.

At 3:15 p.m., the end of the workday, Stacy selects a red star from a basket of stickers on Wesley’s desk. She takes the star to a wall calendar bearing her name. Wesley points to the date and Stacy sticks the star in the space, a glowing record of her day’s work.

"Aiee, aiee," she squeals.

* * *

Stacy is so calm and quiet at home, she seems like another person. She makes sounds only when she’s trying to say something.

She shows more responsibility than the average child, helping with chores and the care of a "sibling."

On this day, soon after getting home from work, she turns on the television and relaxes in her upholstered chair, in the corner of the living room. A larger Zygo machine sits on a table beside her chair, helping her communicate.

Her eyes wander from the The Montel Williams Show to the road outside, visible through the open front door.

"I really can’t tell if she watches TV or not," says her foster mother, Bumbaugh, who works as a teacher’s assistant. "She just turns it on."

Her foster family includes Bumbaugh’s daughter, Rashel, 3; Bumbaugh’s fiance, Victor Rhone; and a retarded woman named Patty, also in the PA Mentor program.

Stacy, who shares a small bedroom with Patty, dresses herself in the morning, but needs help tying her shoelaces.

She’s more independent than Patty, who’s legally blind and hardly speaks. Stacy often mothers Patty, making her bed, helping her get off the county van, serving her food.

"They’ve become real close," Bumbaugh says.

Before dinner, Stacy empties the dishwasher, placing clean dishes in the cabinets.

"She likes to help around the house," says Bumbaugh, who usually tells Stacy what to do.
After setting the dinner table, Stacy helps Patty off a chair in the living room, holds her hand and leads her to the table. They quietly eat the meal Bumbaugh has prepared: elbow macaroni, sauce and peas.

Unlike at work, Stacy eats slowly, putting her fork down while she chews. Her movements seem measured and mechanical.

"I taught her that," Bumbaugh says.

After dinner, Bumbaugh asks Stacy if she wants to get in the hot tub. Stacy nods and squeaks.

She wears her black one-piece suit and climbs into the tub, which sits in the garage. She dips her head under the cool water and swings her arms. Rashel joins her in the tub, splashing around.

Stacy looks at Bumbaugh and seems to be smiling.

Bumbaugh notices Stacy’s dimples.

Stacy is definitely smiling.

All day, she hasn’t said a word.

Somehow, it doesn’t seem to matter.


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