You're pregnant, and the amount of alfafetoprotein in your blood has been measured. You're sitting in the doctor's office waiting your turn. Like everyone, you want a beautiful baby, a smart baby, one whose Halloween costumes, holiday dinners, little league games, and birthday parties you imagine with startling clarity. The baby's going to look like you. He's going to have your mother's eyes, your husband's hands. It's too early, but you've already bought little clothes, little shoes, little bibs. But the doctor has a funny look on his face. He clears his throat, rubs his neck, washes his hands. The odds are 800 to one, and you're the one. Your baby has Down syndrome.
"I'm sorry," the doctor says. He hands you a pamphlet, but you don't have to read it to know. Nothing will be as you imagined, not ever again.
The blood in your body feels heavy and thick.
If only you could wish yourself into another fate. The doctor looks happy. The test is negative. Your baby is fine. All dreams and anticipations can resume, and for you, Down syndrome will remain something you see at a distance, whenever you pass a small clump of adults holding garbage bags and rakes, cleaning pine needles from the front lawn of the public library.
Statistically, you can abort this baby without censure. Only 47 percent of women say they accept the idea of abortion in the right circumstances. But if a baby tests positive for a genetic disorder, that figure jumps to 78 percent. It jumps still more if the genetic disorder is Down syndrome. A 1996 study found that 88 percent of women who have a confirmed prenatal diagnosis that they are carrying a Down's fetus choose to abort.
But what information do they receive first? A 2002 study in the Journal of Special Education asked 69 women who knew they were at risk for carrying a fetus with a disability what they planned to do and what kind of genetic counseling they received. Sixty-five percent said they would choose to terminate a pregnancy that tested positive for Down's or spina bifida. But when the researchers asked the pregnant women if they had been encouraged to meet with a parent of a child with a disability, 91 percent said no. When asked if they had been given information about future quality-of-life issues for a child with a disability, 87 percent said no.
If you wanted, in San Diego, to see a form of your baby's future, if you wanted to see what kind of work your middle-aged Down syndrome child might do when he's 30 and you're 60, where would you go?
The North County center for the Arc of San Diego is a set of blue-and-white buildings on a little road called Ridge, not far from the Vista courthouse. Between 8:00 and 9:00 weekday mornings, vans and buses pull in and out, dropping off 69 adults who have cerebral palsy, autism, epilepsy, and/or some form of mental retardation, including Down syndrome. Some of the adults roll across the asphalt in wheelchairs, some grip walkers, some limp, some even stride, but they are always within reach of the abled.
Arc stands for Association for Retarded Citizens, a national, private, nonprofit organization founded in 1951. San Diego is home to six Arc facilities, which receive funds from the Department of Health and Human Services and pledge to provide "positive experiences for persons served, in a safe environment that allows some risk-taking with no preconceived limits on achievements." This is one of the paradoxes of Arc care. The organization that boldly sought rights for retarded citizens dropped the use of the word "retarded" from its name in 1991 because the word had become a pejorative, and although the developmentally disabled are, by the state's own definition, permanently restricted in their development, the Arc presumes those limits can't be foreseen. Each person, given the right care, may develop, and to that end, Arc clients are called "consumers" and care providers are called "job coaches."
Laura Orcutt, the director of the North County Arc, has worked with consumers for 37 years, and she is neither discouraged nor embittered. In fact, she sees nothing to be discouraged about, except possibly our failure, as a culture, to value human life enough.
"These people contribute just as much as I do, if not more," she says. "I believe that they have made me the person that I am. I appreciate every single day because of them. I can honestly say that I never feel depressed. They are amazing people. Some of them smile, and I think, 'What did they go through to get here?' I think that's what motivates those who stay in the business."
I enter the business as a volunteer on a Tuesday in April, and I attach myself to Helen, the only job coach who seems happy to see me. (The names of all job coaches and consumers have been changed.) The others say very little, perhaps foreseeing my imminent departure -- in mid-June, when my children get out of school for the summer. Perhaps Orcutt has told them I'm a journalist, and they hate reporters. Perhaps they see that I'm a dilettante, somebody who's interested in doing their work but has no knowledge or experience.
In December of 2004, the Wall Street Journal reported that there were 4.5 million developmentally disabled adults in the United States, and 90 percent of them lived in private homes, not institutions. This means that during the day they would likely need the services of a place like Arc. Of the 800,000 people employed as their direct caregivers, at least half annually quit those jobs.
For one thing, the pay is low. Starting pay in the nonprofit private sector was $8.68 in 2004. Between 1992 and 2000, wages for direct support workers like Helen increased 82 cents an hour, while the average increase for a fast-food worker was $2.11.
Helen has raised a family and seems to have come here, like Orcutt, out of compassion. She wears comfortable girlish clothes to work: a T-shirt with rolled sleeves, denim overalls, and tennis shoes. Sometimes she wears her long, curly blonde hair in a ponytail.
Tabitha, the second job coach in Helen's room, is younger. Her boyfriend did a tour in Iraq, and while he was gone, she lived with his family. This is her second time working at Arc -- she was a job coach at 18, moved away, then came back, so she's not one of those who, in Orcutt's words, "come in and think it's easier than it is." If Helen is the nun of Arc, Tabitha is the camp counselor who's seen too many strands of toilet paper in the trees and too much salt in the sugar bowl. She's efficient and sarcastic and knowing and reliable, and nobody's going to drown on her watch.
Some 25 job coaches are employed here at any given time, and they move in and out of Helen and Tabitha's room, one at a time, looking for roving consumers, coffee, staplers, or paper towels. Mostly, they're young. Statistically, at least half of them will quit. The national rate of job turnover among caregivers for the mentally handicapped is 50-75 percent a year.
"It's a very emotional job," Orcutt says. "If you take your job seriously, it's a very tough job." Most of the people she hires have worked with or lived with the disabled, Alzheimer's patients, children, or the elderly. Sometimes, she has to fill in with temps. "If they don't look like they're going to be respectful of our consumers, I don't hire them," she says.
A blind, shaved-headed man who looks 14 is holding the little ring from inside the microwave like a tambourine. He shakes it as if it makes a sound so small only he can hear. He touches it to his face, and he rocks.
A 34-year-old consumer named Sarah is sitting meekly in her wheelchair. She has asthma, cerebral palsy, and mild mental retardation, functioning at the level of someone aged 2 to 5. Her black hair has been braided into a plait that reaches her waist, and her nails are Platinum Pink, worn and chipped at the edges. She keeps a white towel on her lap, and occasionally, when her mouth fails her, she uses the towel to dry her chin. Her fingers bend like broken umbrellas.
A man who is six feet five and massive comes toward me with his hand out. He could grind my bones to make his bread. Instead, he lifts up his shirt to show me his belly and says, "Ah way!"
A slender job coach in the corner explains, "That's Jay. He's lost weight. He's telling you he's lost weight."
Jay tells me his name, points to his own chest, shakes my hand, says my name, and then, as if the Arc were his house and he'd invited us all to a grand party, he introduces everyone in the room.
"Ry!" he says, pointing to Brian, the blind one.
"Rah," he says, pointing to Sarah, who smiles sweetly from her wheelchair and says, "Hi."
"Gay-el," he says, leading me to a wide-faced Hispanic man who hugs himself and giggles.
I meet Luz, Pam, and Frank, who have Down syndrome. Frank is sitting by himself, quietly copying words out of a Wal-Mart circular. His handwriting is tall and decorative, like graffiti. "Hi," he says, then goes back to work.
Jay offers me a chair. He points to my shoes and says, "Eye ooz!" He says it again, earnestly happy.
Harry, the slender, bearded job coach, translates. He says Jay likes my shoes. "He has a shoe fetish," Harry says. "I always get compliments on my shoes."
Jay's consonants aren't my consonants, and sometimes there aren't any consonants at all. He's 43 and lives with one family member. At home, he watches TV, takes out the trash, and puts groceries away. His goals in coming to the Arc are independence, clearer speech, the ability to make a sandwich, and an understanding of the value of money, which, at the time of his enrollment some years ago, he tended to give away.
Although this will later seem naïve, I have brought an activity. I have mistaken the Arc center for day care, a place filled with bigger-than-normal children who need something fun to do. So I have brought one of those square looms for making potholders out of stretchy loops, plus a bag of multicolored loops.
Big Jay, the perfect host, is enthusiastic. He wants to pick a color to weave in. He doesn't want to do the weaving itself -- too many fine motor skills are required -- but he likes the colors. Sometimes he identifies red as blue and blue as red. He says, "Red, mine." He points to himself. Then he points to Sarah.
"Rah," he says. He wants it to be her turn. Then he wants me to give everyone a turn. "Ooz." "Ita." "Ram." Sarah, Luz, Conchita, and Hiram. Everyone. That's the rule.
I offer the loom to Sarah. With her outward-curving fingers she delicately, with great deliberation, pulls the crochet hook. Together we manage to snake the loop through. "Thank you," she says.
"Ooz," Jay says, pointing decisively at Luz, a small, timid Hispanic woman with Down's. Her fingernails have been chewed to irregular, inset shapes, like broken cornflakes.
Luz is 33, and for ten years she's spent her weekdays here. Although she graduated from high school, her estimated grade level is below first. She can shampoo her fine black hair, brush her teeth, and write her name. It's not possible to describe each consumer's history in detail because their histories are confidential, but to be in a room at Arc is to be in the presence of concentrated hope and concentrated grief.
X has a boyfriend, is interested in the Special Olympics, and worked for a time folding boxes.
Until Y was two months old, her growth and development were normal, but then she began to suffer from seizures and high fevers.
Z would like a job working at a cash register.
A was given a total hysterectomy at 15.
B fell out of a two-story window at the age of 2.
C is 22. She enjoys riding her bicycle, dancing, music, and coloring.
D, who has a mental age of 3, would like a job working in a store.
"Ita!" Jay says, and Conchita giggles.
Conchita is hearty, giddy, and large. She is crazy about picking the colors, and it makes her giggle. Luz doesn't giggle. She seems not to smile at all, ever. But she is the one with working fingers. She can control the loop, the hook, the loom. Gravely, she pulls a red one through.
"Ram," Jay says, but Hiram declines. He watches from his wheelchair with amused detachment. If Helen is attached to any one consumer, if one of them absorbs her thoughts more than another (and all of them seem to hold sway there), it is Hiram, and it's not difficult to see why. Hiram sits every day in his slim black wheelchair, holding up his heavy head. He is a quadriplegic with cerebral palsy. His shins are so slender you could encircle them with finger and thumb, and his hands bend into themselves like tree roots. Helen asks him if he wants to do his hand exercises, and she extracts a pair of shiny black stones from the pouch on the back of his wheelchair. "No," he says, though it sounds more like "Oooh." Hiram has epileptic seizures, sometimes daily, and Helen tells me, out of his hearing, that each one leaves a scar.
Meanwhile, something goes wrong in the bathroom. Pam was in there, sad-faced Pam with the eyes that don't face the world together. Pam has Down's, too. She's had an accident and soaked everything, even her shoes. It takes most of an hour for Helen to clean up the floor, the toilet, and Pam. But Helen never acts annoyed. She mops and mops and mops.
She looks up at the consumers who are watching her and says gently, "I've got ten pairs of eyes on me! It's called a mop, you guys. I'm mopping!" She laughs again and tells Jay, "Probably you could do this better than me, Jay. This mop weighs about ten tons."
While she's still cleaning and we're making the potholder, there's a huge shattering pop. A window that was propped open with a stick has crashed down and broken, throwing shards into the room. A job coach named Keith comes in with a broom. He's wearing lowrider, wide-legged shorts, looped with a chain. His hair is buzzed. It's as if a member of a white-skinned rap group has dropped by to help. He goes out on the roof to remove the shards, and Tabitha helps until the Arc is safe again.
I arrive the following Thursday with a toy called the musical tower, a two-foot-high structure composed of brightly colored wooden petals. The petals are smaller at the top and larger at the bottom, arranged like a spiral staircase so that a marble set at the top will roll drip-drip-drip to the base, making a sound like fat raindrops on a barn roof. I thought Blind Brian might like it, thought that many of them might take a childlike pleasure in the sound, but I have forgotten to think of them all as adults who are trying to join the adult world.
I also bring nail polish remover to do Sarah's nails, a children's atlas, and paper-making supplies because Helen had said to me, when we were making potholders, that she's always wanted to try making paper at the center.
My arrival has its ridiculous aspect. I have brought way too many things. Tabitha gives me the sort of look popular girls give nerds in sitcoms. So does Keith.
Helen makes a polite remark, then moves on. "Most of us are going on outings today," she says. She's taking three people to Wal-Mart on the bus at 10:30. You have to plan two days ahead, she says, to reserve a bus with a lift that can raise and lower Hiram's wheelchair.
Tabitha takes Sarah and two other consumers out to eat. Jay leaves, too, but Helen's group waits for the bus like the unblinking characters assembled in Dr. Seuss's illustration for the terminal called the Waiting Place. Although there are objectives for each consumer, and some of them are posted on the wall, and although there's a poster of the five W's (Who are you working with? What are you doing?), the coaches' efforts are subject to the ratios of the day, the compatibility or incompatibility of the patients grouped together, and unforeseen events.
A consumer I've never met before, a frail and stooped woman wearing a leather helmet to protect herself from seizures, wanders in. Her name is Charlene. Her face is tanned and middle-aged -- she's maybe 50 -- and the helmet has the curious effect of making her seem like a 1920s football player. She shakes my hand. She hears that Helen's taking Hiram on the bus, and she sits right down to join in the waiting.
"Bus," Charlene says. "Bus!" She says it happily, like a spell, but she can't actually go with them on the bus. Helen can only take three people. A problem is brewing.
Pam can't go either. Pam is round-bodied, round-faced, and round-fingered. She doesn't smile much, doesn't speak, and follows her own quiet routines in her own quiet way. Every morning, she brings a hairbrush to Helen, who helps Pam brush her soft, blonde hair into a ponytail, a ritual they both seem to enjoy. Then Pam draws a tiny, almost invisible flower on a large sheet of colored construction paper and hands it to Helen, who smiles and thanks her.
Helen is trying to teach Pam, who is scared of new things, to go out shopping, to trust her, and to make coffee at snack time. Helen tells me that Pam might think she wants to go out, but probably, once the bus comes, she won't want to get on. The experience is still too new.
I try the musical tower. A consumer named Wendy drops the marbles down the scale for a while. Her lower lip, swollen and trembling, makes her look desperately sad, so we stop. I turn the pages of the illustrated atlas, and she repeats the names of the animals I point out. "Reindeer." "Moose." "Bear." She likes the reindeer best.
In and out of the room move consumers I haven't met, including a very tall man whom I take at first as a caregiver because he has no features of Down's and he wears a polo shirt and faded jeans and leather shoes. Such clothes are rare among consumers, who tend to wear the easy-care polyester fashions of the elderly. He's slim and handsome, his black hair and black mustache precisely trimmed and clean. There is nothing unusual about his features, his gait, or his eyes. But then I say hello and ask his name. He doesn't give it. I hear someone call him Nestor.
"Hi, Nestor!" I say. "I'm Laura!"
Nestor doesn't smile, answer me, or interact with anyone. He just gives me a suspicious look, turns away, and leaves the room.
Another consumer comes in, a woman with the trademark elastic-waist pants and a flowered poly-blend top. One eye faces the wrong way and is all blue iris and white, no pupil. She smiles and seems friendly enough, sitting at the table with us, until all at once a voice comes out of her. It's a groaning, angry voice, like a poltergeist. It chills the room. The demon voice comes out of her, and then it stops.
I ask if I can put on the tape of Mother Goose songs I have brought in my dilettante kit. Helen had said, the first time I was there, that she thought they ought to listen to something that would help them with their speech. Helen slips the cassette into the player, and sad-faced, trembling Wendy is delighted. Three blind mice. Three blind mice. She dances.
See how they run.
The woman in the helmet, Charlene, likes it at first. Helen tries to make it a noncompetitive game of musical chairs because one of the Arc-wide objectives is to "walk and roll" -- to exercise more. Wendy shuffles around the line of chairs Helen drags into place, sad Pam acquiesces, and Hiram allows his black wheelchair to be pushed around the circle a few times. "Don't shout at me, Hiram!" Helen says merrily as she pushes the handles of his chair, and he smiles, but Charlene sits under her helmet and simmers. Helen sees this right off. She tells me she needs to warn me about what to do when they're "a-n-g-r-y."
"Fuck you," Charlene says. "Kick you. Gonna kick you!"
Humpty Dumpty sat on the wall. Humpty Dumpty had a great fall.
The music is merry.
Helen says, "You protect yourself."
I ask, continuing somewhat nervously to walk around the chairs, "Um, what about the others -- the other consumers?"
"You can go into a blocking stance. But not you -- you get a job coach. I don't want you to do it. Mostly you just ignore them. Attention makes them do it more."
Charlene says loudly, "I'm going to kick you in the face, you bitch."
Little Tommy Tucker sings for his supper.
Helen moves Hiram's wheelchair carefully around the room. Charlene weighs less than a hundred pounds, but she looks spry enough, in her football helmet, to do some face-kicking.
"She has a rod in her back," Helen tells me. "A metal rod. So she might make you want to push her back, but you can't. You need two people, one on each side, so you don't hurt her."
It's almost 10:30 in the morning, and still no bus has arrived, and now there's Charlene's rage to contend with, brought on by the childish music, maybe, or the idea of the approaching bus, or something unknowable. Helen says she'll go and tell Keith, the tattooed tough one. "He'll know how to calm her down," she says.
By the time I leave at 11:00, the sun has come out. The bus has come. Keith is sitting outdoors with Charlene, who is no longer threatening to kick anyone's face. Somehow, he has helped her become calm and happy again. The music is over, back in my bag. I say good-bye, and I take my musical tower, holding it like a remnant of a foreign culture, use unknown.
When I arrive the following week, Helen is intent on helping her consumers meet objectives. The center has a computer lab outfitted with devices that are supposed to make it possible for consumers like Hiram to hit buttons and choose answers. Helen's group today consists of Hiram, Pam, Frank, and blind Brian, so she has only one consumer, Frank, who works consistently at tasks and needs no assistance or reassurance. The other three can't work alone.
Blind Brian sits in front of a computer that asks him over and over to touch the screen. He's prompted to find the ball, to find the cat, to find the ball, to find the cat. He can hear the voice and find the screen, but he can't see the ball or the cat.
He begins to cry. "I need a hug," he tells Helen.
"I can't do that," Helen says.
"You're mean," Brian says.
"Because I won't hug you?"
"Yes. I miss my grandma."
He bends at the waist in his chair, sucking his thumb. As if he learned to cry from a comic strip, he says, "Wah," and then moans. "Need a hug," he repeats. Time passes and the cat stays on the screen.
Helen calmly tells him it's not her job. She can't hug him, but Grandma can.
"Is it time to go home yet?" he asks.
"No," Helen says gently.
Quietly, off to one side, Helen tells me that Brian's needs are getting more physical.
I think of the way Brian tries, reaching out into the room, to touch her, and how often she tells him firmly that he can't touch her, that it isn't appropriate. She means that boylike Brian, who is chronologically in his twenties, feels not just a need to be hugged. A feeling like a great empty sky spreads out above us.
Frank pays no attention to Brian's cries. He does his computer work methodically, just as, during the first 90 minutes of the morning, he methodically copied headlines from a Christmas magazine, writing HLIDAYY COOKES ARE WSEET HEAVN and SAEV MREO MONEY NOW. The computer screen presents a word beginning with each letter of the alphabet. He neatly prints the word on his paper, then types it on the screen. Ant. Cat. Dog. Xylophone. Helen says Frank has improved a lot, starting at 30 percent and now working at 75 percent.
On the other side of the small, hot room, Hiram and Pam are sharing a computer because the other one, which is attached to two large button-style devices that Hiram can strike with the side of his hand, is broken. Hiram is trying to type letters with the sticklike handle of a wooden spoon, but he holds the keys down too long and they repeat themselves KKKKKKKKKKKKKKK. Pam sits still and watches.
Helen leaves Brian for the moment and tries to help Hiram. The program is designed to produce a picture for each word. Type "PAR" and you get "park." But mostly, Hiram is just getting PPPPPPPPPPPPPP so she switches the program to one that shows drawings of coins and dollar bills and asks Pam and Hiram to select the correct dollar amount.
They work at it quietly, getting some right, some wrong, and time passes, moving us forward toward lunch. "For Pam," Helen tells me, "just concentrating for 15 minutes on the computer is something. For her, it's not just the lesson the CD-ROM teaches but going all the way through the lesson from beginning to end."
Through the windows of the computer room I can see the senior center, where three seniors with Down syndrome are playing with a huge inflatable ball. They roll it to each other, lean over their Oompa-Loompa bodies, pick it up, roll it again. A stoop-backed woman wearing a leather helmet like Charlene's is curled over a thick wooden jigsaw puzzle, the kind with just 10 or 12 pieces. Several other chunky puzzles are stacked beside her, and all of them have been assembled so many times the paint has rubbed off the edges.
"It's harder than it looks," Helen says, referring not to the puzzle but to the job itself, the world in which we stand, the three droning, flashing computers that are not simultaneously treating blindness, longing, cerebral palsy, and two very different forms of Down syndrome.
I tell her, apologetically, truthfully, that I never thought it was easy. Perhaps it was my dilettante kit, my bag of activities and grooming supplies, that made me seem like a know-it-all Mary Poppins.
"There are so many things to think about," Helen continues. "There are the objectives, and then there's 'Did we have a g-o-o-d day? And did we have an s-a-f-e day?' "
Good. Safe. I think of this, and then I think of the report that said Big Jay was still having trouble distinguishing between $20, $10, $5, and $1, a long-standing primary learning objective. The job coach who had been helping him wasn't sure he understood the concept of money, or that he could ever understand it.
I wonder, as I leave the center, if it's better to believe that Jay will one day learn the value of money, or to believe that he will never, no matter what, learn the value of money. Will Jay someday ride the bus alone, shop alone, make a sandwich for dinner, and grow up, if someone works long and hard enough to teach him those things? Or is it merely in everyone's best interest, especially Jay's, to act as though he will?
Roberto is wearing his red T-shirt and straw hat, dressed to work, as always, at a beach resort hotel. He rides there on the bus each morning with his job coach and two other consumers, Betty and Joe. The job coach uses a blower to clean the tennis courts, and the consumers rake the leaves into bags. Sometimes they hit tennis balls with members, who buy them ice cream.
Roberto is not obviously different, at first, from the job coaches. His teeth are straight and in fair condition. His brown eyes move in the usual ways, as do his arms and legs. He is, at first glance, a genial middle-aged man in a straw hat. One morning he comes up to me and opens his wallet. He makes sounds that are like words, and he holds out a picture of a baby girl. "Eh-ah," he says cheerfully. "Eh-ah."
On the back of the picture, someone has written, "For Uncle Robby from Ella."
This gives me enough clues so I can say the right things, and he can nod and beam some more. Then he shows me another picture, this time of a gray-haired Hispanic woman sitting in a flower garden.
"Is this your mother?" I ask.
He nods happily. The photograph is laminated, and I decide that someone has thoughtfully done this for him so he can carry it around without wearing it out, but then I turn it over and see that it's a funeral card. She died two years ago. En memoria de nuestra querida madre, the card says.
Roberto's job coach is gathering his things into a backpack, checking the wall clock, checking his watch. Roberto's ready, Joe's ready, but Betty's not here yet. It's a fair walk to the bus stop, and the consumers don't walk with uniform or predictable speed. The resort lies in a far corner of Carlsbad, and although the Arc (not the resort) pays the consumers what they earn, it's a job just the same, important both to the resort and to the consumers.
The job coach looks out the window at the parking lot, checks his watch again.
Finally Betty speeds in, thin and blue-eyed, her face small and eager.
"Go change your shirt in the bathroom, Betty," her job coach says. "Remember to close the door. Then we'll go."
Tabitha says that yesterday Betty's shirt was inside out and backwards. She turned it right side out, then had to be sent back into the bathroom to turn it around.
Another time, Tabitha told me that Betty is in love with her job coach, has been in love with him for years. Many of the consumers have boyfriends and girlfriends, about whom they talk with shy affection, but none of the others have, to my knowledge, placed their affections where they can't be returned. When Betty comes out of the bathroom, her red T-shirt is on right side out and forwards.
"Good job, Betty," Tabitha says.
Betty puts on her straw hat, which is covered with artificial daisies and has a little chin strap. Her job coach hoists his backpack, takes one last look at his watch, signals to Joe and Roberto, and says, "Okay, Betty, let's go."
Betty gives him a look of adoration, the daisies trembling slightly on her hat, and she follows him out the door.
It's flower-pressing day. Since it's hard for Helen to take her group out, she's going to try an on-site job. Handmade paper. It was her idea, but I have a flower press, a screen, a deckle, and slight experience with tearing paper, pulping it with a blender, and filtering the soggy mess to form thick, rippled sheets of handmade paper.
I bring lavender and roses and the flower press, and we pick more flowers from the Arc flower garden. Then I sit at a big round table with Conchita, giddy and giggling, Sarah, demure in her wheelchair, and Big Jay, who's once again in charge of making sure everyone takes turns, with two exceptions. Hiram sits in his wheelchair doing math. His mother has sent, according to her usual routine, two Dr Peppers, a plastic mug with a bendable straw, a stack of white hand towels, lunch, and a page of neatly written four-digit addition problems. Hiram uses his pen to punch the numbers into his calculator, and then slowly, carefully, he writes the answer to every single one, even though the numbers are so hard for him to write that the lines come out loose and wide, like individual strands of hair. Frank sits nearby with an equal air of businesslike concentration, preferring to copy by hand the words he finds in his magazine, flipping the pages and looking carefully for his next headline.
The rest of us rip flowers off their stalks.
"I got my hair cut," Sarah says shyly. "Two feet came off."
"What did you do with it?"
"Put it in the trash can." She shows me the pink barrettes and fuzzy ponytail holders she picked out afterwards. For her, stripping blossoms from the stalks is complicated because her eyes play tricks on her. The flower always appears to be in a place other than where it is. Conchita, though, can see the flowers perfectly, and she rips them up compulsively, tearing off every last tiny leaf.
For some reason, Roberto's group isn't going to the resort today. He sits at the table and tears flowers until they're all pressed between sheets of white paper and the wooden press is crushing them flat on the windowsill. We're finished. I pull out my knitting because I, like Frank, can't sit still without something in my hands. Roberto gently touches my hair.
"Does your mother knit?" I ask Sarah.
"No," she says.
"Does yours?" I ask Roberto, remembering too late the memorial card in his wallet.
"Died," he says. He takes no offense, smiles anyway, takes his hand away from my hair. He pulls out a family photo of a father, a mother, and a little boy. He says he lives with his sister, and he points at the smiling mother in the picture.
Blue-eyed, hopeful Betty, unable to follow her usual routine of donning the flowered hat and following her beloved coach to the bus stop, is stuck indoors like Roberto. She paces, then sits. Conchita has brought a music cassette with her, and it's playing scratchily, noisily, on a portable stereo. The sheer number of people in the room makes it seem hot and loud. Betty covers her ears with her hands and walks nervously around the room some more.
"She doesn't like loud noise," Tabitha says.
Finally the clock says 10:00, and 10 o'clock is Coffee Time, when a consumer and a job coach walk through both rooms like waiters, taking coffee orders, counting cups. The coffee, creamed with white powder to the color of sand, is the elixir of life, the warm bearer of both sugar and caffeine.
Pam, the very quiet one with Down's, likes coffee as much as everyone else, but during coffee hour today she starts to scream. Short, ferocious sounds like a car alarm come out of her. Everyone at my table, even the perpetually laughing Conchita, is unnerved. Conchita grabs her head, says it hurts. Roberto looks distressed. Sarah bows her head, drinks her coffee through a straw, then says, "Thank you." Not even this disturbance can make Sarah impolite.
"It's the crowd," Helen says quietly. "Pam's not used to this many people."
Helen quickly takes her group outside, and the problem is solved. Pam stops screaming.
The following Tuesday is supposed to be paper-making day. The flowers are dried and flat, and Frank has been busy with the Arc center's motorized paper shredder. But we can't find a blender to make pulp out of the shredded yellow incident reports and confidential medical forms. Unable to work, we talk. I pour nail polish remover onto a cotton ball and dissolve Sarah's chipped nail polish, then Conchita's and Wendy's and even Charlene's. Charlene, her head encased in its leather shell, lets me do just one hand, then she loses interest, and I'm relieved that my presence doesn't upset her and get her swearing again.
There's a new guy sitting with us, a man who normally spends his days in the big room next door. William looks like a creative writing professor in a wheelchair. His black hair is neatly cut and fashionably gelled, silver only at the temples. He wears glasses and a jean jacket, black jeans, black leather shoes, and black leather biking gloves.
"I don't speak Spanish," he says.
"Do you speak any other languages?" I ask.
"Norway," he says. "We have a farm there."
This is within the realm of possibility, I think.
"A ranch," he adds. "We raise cows. I'm a cowboy."
I don't know much about ranching, Norway, or cows, so I just smile and say that sounds great.
"My aunt's coming to visit," he says.
"Where do you live?" I ask.
"With my mother." He pauses, then says, "My father died."
"Mine, too," I say.
"My dog died," he says.
"Last June." I'm impressed that he knows an exact date. Maybe there's a farm in glacial Norway, a dark green ranch dotted with cows.
"What kind of dog?" I ask.
"Big," he says.
While we wait for coffee hour, a job coach gets ready to take three yellow-shirted consumers to their job site, a small, old-fashioned grocery store. They will put on their sky-blue ball caps, ride the bus for a mile, work for an hour each weekday, and earn what the Arc pays them: a small hourly wage. There they will stand in a group within the narrow aisles and neaten up the bags of pasta, dust cans of Lechera with a feather duster, spray window cleaner on the freezer doors, and rub smudges off the meat case. "It's better than sitting on your butt all day!" a cheerful consumer named Sally tells me. "I get paid, too," she says. "That's nice."
Paper-making day, take two. I bring a blender from home this time, and Helen helps me set up a hopeful little assembly line at the long Formica counter. We align a blender, a tub of water, two screens, two deckles, some sponges, a mound of cloth squares onto which each square of pressed pulp will be transferred, new wooden clothespins for hanging the paper out to dry, and a roll of curling ribbon for making clotheslines. It's not exactly Ford Motor Company. It's hard to picture venture capitalists laying down cash.
Still, we try to make a paper factory. Sarah, in her wheelchair, holds a colander on her lap. She's supposed to tear the long strips of paper produced by the shredder into smaller bits and drop them in the colander. First she must painstakingly grasp each one. She is always reaching into the air one inch beyond the object, but she reaches again and again until what she sees and what she feels are one. When she's finished, she says, "Thank you."
Charlene, the volatile one in the leather cap, is game for turning on the blender, except that the blender I've brought from home is not operated in the usual way, by pushing buttons. Instead there is a lever that you have to push upwards. Over and over I say, "It goes up. You have to push up." I try to help with my fingers on her fingers but am afraid that this will enrage her and she'll want to kick me in the face. Finally, in a fortunate accident, we discover that the electrical outlet we're using is defective, and the only way to make the blender go on is to hold the plug-end of the blender cord and shove it deeper into the outlet. This way, the consumer can seem to be turning the blender on and off whether she is or isn't.
Pam is next as blender operator. Like Charlene, she cannot fathom why the button isn't a push-in. The blender seems cruelly designed.
Frank and Hiram turn away as if from housework, back to math and writing. Conchita giggles and peels dried flowers off the paper from the flower press, then tosses them into the tub of paper pulp. She does this until all petals and leaves have been peeled, but the other work stations don't interest her.
Pulp-screening, for example, is a job no consumer wants to try. No one wants to plunge the deckle and screen into the watery lukewarm paper pulp we've made and drain out the water, flip it onto a square of cloth, and push the sponge down on the resulting slippery mass to make a flat, wet, nascent sheet of paper that will peel off the cloth when it dries. It's weird, messy work. I see that now. Normally, when you're presented with a solid object dissolved in water, you don't press on it. That this tub of pulp smells like lavender and roses makes it no more enticing, except to Helen and me.
Outside, the sun comes out. Keith, the rapperesque coach in denim and chains, peers doubtfully through the window at our assembly line.
"Do you want to make paper, Keith?" Helen asks him.
"No-o-o-o. No, I don't," Keith says definitively and shakes his head.
As the sun begins to warm the outside air, I keep filtering and pressing, the warm pulp sticking to my hands. I'm facing the window, so I watch as Keith collects a group of consumers around the basketball goal. He wheels William out, William of the black bicycle gloves and the faraway Norwegian cattle. Keith sets the wheelchair under the goal and tosses William the ball. Keith then finds the thin, birdlike man named Kyle, who wishes only to toss his tennis ball into the air over and over again, and talks him into playing. Then Keith comes back into our makeshift paper factory to ask Sarah if she wants to come outside, and she shyly accepts, grinning as though she's just been asked to dance by the very boy she likes best.
In the warm, gentle sunshine, beatific after the morning fog, Keith starts tossing the basketball at the hoop, twirling it, then passing it to William as he sits in his wheelchair below the net. He keeps up a kind of streetwise patter, and it occurs to me that Keith talks differently to consumers than anyone else. Helen is motherly and sweet. Tabitha is sardonic, like a bossy sister. Others are quiet and grave. But Keith looks like the sort of person who wouldn't talk to handicapped people, if there is a type. His piercings, the chain that loops from belt loop to belt loop on his low-slung, loose denim shorts, his crew cut, his speech, all of these things establish him as someone who is tough, rebellious, and streetwise. When he talks, he's the authentic user of slang. "Hey, Frank," he'll say. "What's up, man?"
If he wanders into our room, searching for Big Jay or Suspicious Nestor, he'll say, "Have you seen my seven-foot giant?" Keith can say dude, brother, and girl and make the cloistered world of the Arc seem like a high school where everyone likes you. When he talks to William and Sarah and Hiram, all of whom are in wheelchairs, he is inviting them into a club of sorts, the club of hip outsiders, careless and wise.
As I press hard on the sponge, forcing water out of the pulp and onto the surface of the screen beneath my fingers, they smile with the most extraordinary joy. They look at him with transforming happiness, and they stop, for a stretched-out space of time, seeming handicapped.
I keep making paper, swooshing the empty frame down in the slippery pulp, sieving it up, extracting every drop of water from the fibers of dead flowers and shredded files, all the words too small to read now, inextricable, and then Helen and I hang the torn sheets of cloth that hold the soft, soggy pages in the sun.
It's a June day and most people are going out. The red shirts are going to the tennis courts, the yellow shirts are going to straighten grocery shelves, and Tabitha is taking a trio to Wal-Mart and McDonald's.
Helen tells me that Laura Orcutt and the administrative staff are very excited about the handmade paper project. They're going to approve funding for a blender. They think the paper could be made into folders holding sheets of stationery, and the stationery could be sold. We discuss ribbon ties, methods of attaching the pockets for holding paper, the size the pieces of paper should be.
Meanwhile, we're waiting to go out ourselves. There's no lift for Hiram and his chair, so he can't leave, and if he isn't reassigned to another coach, Helen can't leave either. Lots of shifting is done. A supervisor reassigns Hiram to Keith, who comes in doing his "Man, you've been waiting for time with me and now you got it" routine, and Hiram looks thrilled, and then Helen gets the keys to an Arc car. She now has custody of Frank, Pam, and a consumer called Sadie.
This is the price I sense Helen pays for today's mobility: being in charge of Sadie. Frank is hardworking and reliable, Pam is sweetly neutral, but Sadie is desperation incarnate. Her face is dough-colored, her gray hair is messy, her glasses are smudged, her teeth are misshapen and yellow. She uses a walker, and her spine curves like the letter C, although job coaches often tell her to stand up and sit up straight. She talks of little but Diet Coke, which sounds like "Di Co."
Before Helen can leave, she cheerfully suggests that everyone in her group use the bathroom, and while Helen is helping Sadie with the toilet, she discovers a bruise on Sadie's back.
Helen calls a supervisor, who says, "What the -- ?"
The supervisor calls her supervisor, who has to come and look at the bruise. Through the bathroom door come snatches of conversation: "When did you fall, Sadie? How did this happen?"
It happened in the facility where Sadie lives, in the night, not here, not at the Arc. Helen must make a report of how and when she saw the enormous bruise. Otherwise, she might be blamed. When this is done, Helen, who is still game for an outing, still unflappably cheerful, brings the car around.
We depart. Over and over, as we drive the streets of Vista, Sadie says mournfully, anxiously, "Dee my Di Co?" wanting it to be Diet Coke time, unable to accept or perhaps recall Helen's assurance that the Coke is in the trunk and that she'll get to drink it at lunch.
Dee my Di Co.
Helen pulls over at the Wave water park and asks the ticket-taker if we can just go in for a minute and look. The uniformed employee looks uncertain, but she waves us in. She watches Frank and Pam and knows, as everyone knows, that they are what used to be called Mongoloid. She watches Sadie shuffle along with her walker, a faded hunchbacked woman in a faded old man's shirt, perhaps just elderly and sad. Progress is slow. The uniformed girl decides we're not going to strip and jump into the Rio Loco, and she turns her attention elsewhere.
It's early in the season and blissfully warm. The pale blue water slaps the white sides of the pool. We sit down on the foot-ends of loungers and contemplate the alluring and nearly vacant water. A few children shriek and swim at the edges, their bodies brown and muscular, their faces confused, briefly, by our presence.
Pam stares, silently fascinated by the water, the children, the weather, or the simple freedom of the larger world. Sadie curls over her walker, her face dejected, but her mind temporarily distracted from the Diet Coke she can't yet have. Frank is contented but not enthusiastic. He can take it or leave it.
"Show us what's in your net!" Helen says, stopping an employee who's scraping the top of the pool with a round white net.
Puzzled, the pool man turns over the net to display bits of wet leaves.
Helen asks him about his work, and Frank and Pam look into the net for a second. Then the pool man quickly departs.
"Jasmine f-f-farted yesterday," Frank tells me.
I stare at the smooth blue water, the green palm trees. "Did she say excuse me?" I ask.
"No," he says indifferently. "She's a dog."
As usual, Frank is not preoccupied by what isn't. He's not wishing he were a young, tanned boy swimming freely in blue water. He does not feel conspicuous or slighted by the gods, who made him this way and not another. He wants to go to Wal-Mart after this and buy a pen, and meanwhile, he's thinking of Jasmine the dog, who farted the other day.
Likewise, Helen sees what I would never see. I see a pool in which Frank, Pam, and Sadie can't swim. She sees a place to sit contentedly in the sunshine. I see a pool net full of trash. She sees an opportunity for pointing out useful physical labor, the ordinary workings of the world. I see Sadie's hopeless sorrow, and Helen sees a person who might be happier outdoors.
The following week, I go with Helen and three consumers to Wal-Mart so they can practice using money like adults. It's a cloudy day in June, cold and grim. When we leave the Arc, the small room is empty. A bird-thin consumer is sitting outside alone, against the wall, with a toy action figure. He's wearing a Superman shirt. He twists the head of his toy and waits, uninterested in us or our departure. I know from a job coach that he's waiting for his father.
"He says his father's coming every Friday," the coach told me. "His father never comes, though."
At Wal-Mart, we make our conspicuous way. This is Pam's first trip to a department store, so Helen has her private worries. Pam is, after all, the one who screamed like a car alarm when the Arc room, where she felt perfectly at home, got too crowded. What if Wal-Mart, the most popular store in America, is crowded?
It isn't, though, and Pam plunges ahead as though she knows what she wants and where it is. Behind her, Miguel comments on everything in two languages, as if he's his own translator.
"MIRÁ," he says. "Look! Cookies! ¡GALLETAS!" He strides like a teenager, his corduroy shorts fashionably loose and long.
Frank is, as usual, businesslike. While Miguel is saying, "CHOKE-OH-LATTE! Chocolate!" and pointing out the candy aisle, Frank quietly strolls down the aisle with two dollars tucked into a handmade paper wallet, one of the sample products from last week's assembly line.
Helen leads them to the pen aisle, and Frank selects a set of pens that costs $2.57. He mistakes the price, says it's $2.07. Helen tells him he probably has more money in the director's office, so she'll loan him a dollar.
"Okay," Frank says. He's cheerful but not antic. Helen tells me that he sometimes dashes off alone and she has to look for him, but it's hard to picture. "That's cute," he says mildly, pointing to a display of toys.
Pam is here to buy construction paper, which is conveniently near the pens. She has $2, too, in Helen's wallet. (I'm not sure that it's Pam's money, actually. Helen might just be giving her the money, because that's the kind of person Helen is.) But in the middle of the process, Pam bends over in a significant way. "She has to go to the bathroom," Helen says.
Helen, not in the least bothered by the detour, leads Miguel and Pam all the way back to the entrance, where the bathrooms are, while I walk with Frank to buy his pens. We line up behind a mother and her son who are buying a great many things, so Frank chats a little. He points to the current issue of Glamour, which shows Debra Messing and much of her cleavage. A headline says, "12 things men want to say to you but don't."
"I have that at home," Frank says. Then he points to a magazine with a Disney character on the cover. "That's coming to my house," he says.
I think about Frank's secure and happy life, so different from Pam's. She lives in a group home, and he lives with his mother. She seems to have so few interests, and he has so many. He has his magazines. He goes to family parties, takes family vacations. He's like a middle-aged bachelor who hasn't quite found the right girl.
He points behind us at the rows of candy bars, at the Snickers display. "I don't like those," he says.
"Me neither," I say.
"I can't eat them," he adds. "They make my poop not come out." He makes a quick gesture to demonstrate where this bodily function would occur had the Snickers not intervened. The mother and her boy and the checker are listening to this. I realize they are likely feeling the pity-laced fear I feel when I see a handicapped stranger in public. But of the 12 Things Men Want to Say to Me but Don't, this is the funniest. Being with Frank is more interesting than being with most people.
I say something trite and socially acceptable, like "You don't want that," and Frank nods. We buy his pens and return with Helen to the office-supply aisle so that Pam can pick out her tablet of colored paper. Now, though, Miguel has to go to the restroom, so Helen leaves me in charge of Pam. I'm a little scared of Pam, frankly, but I try not to show it. We stand in front of the big pads of colored paper.
"This one costs less than two dollars," I say, and point to the paper she uses at the Arc to draw a picture, one a day, for Helen.
Pam picks it up, seems content to start walking out. But then she stops before the shiny packages of colored markers. She looks at them longingly. She wants to buy some. She never smiles or speaks, just stares at them and yearns. I tell her she can't buy them this time because she's spending the whole two dollars on her paper. "Next time," I tell her. She doesn't move. She's standing like an oak tree before the pens.
I'm thinking about what I'll do if she starts the car-alarm scream, which is nothing, since I have no idea what to do, when for some reason Pam gives up on the pens and starts walking, and Helen comes back, and we all progress to the checkout aisle.
Miguel has picked out an adult purchase, too: he is buying (with Helen's money) individually wrapped packages of peanut-butter crackers. Pam pays. Miguel pays. Helen helps them with all the steps, introducing them to the checker.
"This is Michelle!" Helen tells the consumers, reading Michelle's nametag.
"Hi," Michelle says.
Helen privately tells me she's glad Miguel chose these crackers because they can share them with Kyle, the bird-thin consumer, during the day. Kyle tosses his tennis ball and waits, but he doesn't eat well. She says Kyle has a problem that starts with a T. "Tetra-something?" she asks herself. "Anyway, it keeps him from gaining weight."
She tells me about a consumer whose parents left him in foster care and moved to another state.
"How could someone do that?" I ask. The sky stretches out above us again, the sky over the island of loneliness.
"I don't know," Helen says. "At first, I didn't know if I could work here. It's so sad." She pauses, then adds, "You know, some of them -- the consumers -- look so young, but they're not. Their parents might be 70, so you don't know what might have led them to their decisions."
We're walking to the car when it becomes clear to me what we would lose if we tried to avoid or even prevent the existence of all people who won't look like Mary Kate and Ashley Olsen, if we spent even more of our disposable income and attention on the likes of Angelina Jolie, if we continue to think that beauty, grace, skill, and intelligence are the only true source of happiness. I know, suddenly, what Pam and Hiram and Roberto and Frank and Jay and even Sadie contribute, and it's a contribution able people, people in what's known as their right minds, can't make.
It comes to me when Helen says that Pam got herself a bit wet in the bathroom, and she's debating with herself whether she should take the consumers back to the Arc or go out to lunch as planned. She indicates the small wet spot on the back of Pam's pink pants. Pam seems unaware of it, and it seems unlikely to me that anyone would notice, given Pam's more conspicuous handicaps.
I've spent the last seven years of my life making shopping trips with two small children who had roughly the mental age of Pam. A small spot like that I would absolutely have tried to get away with, just so I could finish my list of errands, follow through on my plans.
Unless the spot were on my pants. This I would have had to think about more. The standards of shame are different for adults and children. We often presume children and the handicapped have less dignity to mar.
Not so long ago in our civic history, Robert F. Kennedy made a speech to a congressional committee: "We visited a state hospital for the mentally retarded on a bright April day when you would have expected all the children to be playing outside. The children were inside, standing in a room bare but for a few benches. The floor was covered in urine. Severely retarded patients were left naked in cubicles, which suggested kennels...Patients were washed by a device resembling a car wash...The only toilets for the approximately seventy patients in a large ward were located in the middle of the room, permitting no privacy."
That was 42 years ago, within Helen's lifetime and the lifetimes of many Arc consumers.
Helen looks at Pam again, and she helps Pam get in the car. "Normally, I don't like to let them be out in public like that," she says quietly, and then adds, "but maybe it's not too bad."
It really isn't. I think Pam would probably prefer eating out to going back, and I say so.
But Helen's grave consideration of Pam's adult dignity, and how to preserve it at all times, stays with me. It's ennobling in a way that gives me hope for us all, and that is, for me, the contribution: a chance to treat even the most vulnerable, shackled, voiceless humans as if they were of great value and worth, a chance that, when taken, proves over and over again that they are.
On my second-to-last visit in mid-June, we make paper again. The new blender is here: a model with a button you push in. Consumers sit at tables punching holes in colored paper, making confetti to stick in the pulp. Job coaches hover around the counter, helping each consumer in turn to make a piece of paper, carry it out to the makeshift clothesline, and pin it up. The wind is strong and the sun is bright, and within an hour the first sheets of paper are curling off the strips of sheet like potato chips.
A supervisor comes to take a Polaroid picture. We smile beside the flapping bits of paper and the torn squares of white sheet.
Back on the assembly line, desperate Sadie cries about her lunch, so worried about the possibility of missing out on Diet Coke that she can think of nothing else. Helen tells Sadie it's okay, she'll talk to the supervisor, but meanwhile why doesn't Sadie make colored designs on the clothespins and hand them out? Sadie draws with a fine green marker on a clothespin the approximation of two eyes and a smile.
"Lift your head up, Sadie," says Larissa, a job coach I've never seen before. "Let the world see your pretty face."