While yet I live, let me not live in vain. -- from a plaque outside the administration building of Forest Haven, the District of Columbia's Institution in Laurel for mentally retarded.
During his first 34 years at Forest Haven, Benjamin, 38, spent most of his time alone on the cold concrete floor of his ward, tied to a pole near the nursing station with a bedsheet.
When he cried, as he often did in the early days, his face was sprinkled with water. An early memo also advised the staff to give him "love, affection and hugs."
Sometimes, the staff would untie him, but as he grew older he got wilder, raging through the ward, ripping sinks off walls and drinking from toilets. So the staff would tie him down again. Years later, they realized Benjamin's treatment was causing his outbursts. He would rage because he was restless, drink uncontrollably because the heavy doses of drugs used to calm him down were making him thirsty.
It was just last spring that his drug dosage was reduced, his bonds untied, and this toothless, stubble-haired man has come a long way since. He was labeled an "imbecile" by a D.C. court and sent to Forest Haven in 1945, after his frustrated father tried to drown him.
Today, he has learned to eat with a spoon. He helps the staff dress and take to the toilet the 38 others in the dank, cinderblock barracks where he lives. He still can't talk, but he is on a program that rewards his good behavior with candy and fruit, and he works with an eight-man group that picks up trash on the grounds several times a week. He seems to like that, the staff says. He doesn't run away much anymore.
And though Benjamin sometimes smokes three cigarettes at a time, he no longer eats them. Progress.
Change your perspective a little if you go to Forest Haven, tucked as it is in the forests of Laurel, far from the heartbeat and highlife of a proper federal city where many would rather not know about grown men and women who wear diapers and bang their heads against walls for attention.
Spend 48 hours there, sleeping, eating and living with 780 of the most severely retarded citizens of Washington, and life becomes a series of pictures -- sad, sickening, gut-pounding pictures. People living out their lives in the "Compound," 250 acres of brick and concrete sprawled across softly rolling hills: a warehouse in a time capsule, a playground for the forgotten.
During the last 55 years, federal investigators have often criticized the facility, finding urine on the floor and feces on the walls, documenting incidents in which staff members have beaten and abused the residents. Several times, the institution's eligibility for Medicaid funds has been in jeopardy.
Almost three years ago, U.S. District Court Judge John Pratt, appalled at the conditions and abuses documented at Forest Haven, issued an order to gradually close the institution by 1987 and move its residents into community-based homes. There they could receive more specialized and practical training and live in a setting where they could have the opportunity to work and live like normal people.
Since Pratt's decree, 110 people have been transferred to foster homes, group houses and private apartments, where they "change overnight because they are getting real role models instead of institutional ones," according to Charles Inlander, who was appointed by the city to head the phase out of Forest Haven. Some have jobs on department store loading docks and in fast food stores. They are making money and paying taxes, taxes that go to their own care.
But they are the prodigies, the less severely retarded, staff and administrators quickly volunteer. For the others, it is more difficult. Today at Forest Haven, progress is getting a 50-year-old woman with the mental age of an infant to keep on her underwear or to learn to use the bathroom instead of a diaper. It is teaching a deformed child to use a spoon, training a 30-year-old to say his name.
The staff, says volunteer coordinator Loretta Clark, "tries to do the best with what we have. At least we care. Somebody has to."
Life in Forest Haven, a place with a name only a cemetery should have:
Benjamin is found this morning, on a day like every other, in the playroom of the West 2 Ward in the Curley Building, home to the seriously retarded men at Forest Haven. His left hand and jaw tremble from his years on drugs as he shuffles the brown, concrete floor, breathing air thick with the smells of urine and soiled diapers and the ammonia that never quite covers them, stopping here and there to slap a palm against the wall. He is a short man, frail-looking at times. But doctors say he is unable to control his adrenaline, giving him at times extraordinary strength.
Bathing and breakfast over, the rest of the guys are into their daily routines: sitting in the hallway, rocking and groaning, picking their eyes or their ears or their noses, staring at Sesame Street on the television or at a fixed point somewhere in their minds. Some have the crusty remnants of the morning's eggs, milk and toast on their shirts.
Benjamin is edgy, a nursing assistant says. Illness and city hiring restraints have brought the staff at West 2 down from seven to four, and there is no one to take his group our for work. There is no one to do training of any kind.
The last time the staff was short and Benjamin didn't go out to work for three days, he pulled a sink off the wall.
Raymond P. Ragosta is Benjamin's psychologist, one of two at the institution. An energetic but frustrated man who carries more than six times the number of cases he says he can effectively handle -- handwritten lists of his patients' names on legal-size paper cover a five-foot-long space on his tiny office wall -- Ragosta says Benjamin is testament to the history of misunderstanding the mentally retarded.
"We're looking at someone who came in before they really knew how to evaluate retardation," Ragosta says. "We want people to behave normally, yet we put them in an abnormal environment. A normal 3-year-old shares parental attention with maybe only a few others.
"Here, he has to share that attention and training with a whole ward of people and has parents who work eight-hour shifts. He has learned what he needed to learn. He reacts with instinct. He learned that when I bang my head, someone pays attention to me, that when I sit quietly, I get no attention.
"But the institutional response was that we need to control the head banging, not to discover what causes it or to educate the person in some way. Back in the 1940s and 1950s, they used to drug people to control them. And that was a breakthrough. Prior to that, there was this 'One Flew Over the Cuckoo's Nest' mentality, that you cut out parts of someone's brain to help them.
"Now, we have learned that mentally retarded people don't learn differntly, they learn slower. They need patience and a simplified technique. Think about it. Going to the bathroom is a 12-step process. We learn at age 2, but for these people, it has to be broken down and taught step by step.
"We know the technique but we don't have the manpower to implement it. These people are getting older much faster than they are learning. If we have to worry about getting the money for milk on the table, sheets and towels, having enough staff, how can we give the residents the time and attention they need?"
"It will take nothing short of a miracle to get these people trained enough to be able to place them in community-based group homes," Ragosta says.
Night falls on Forest Haven and from all over the compound, less severely retarded residents who can feed themselves move towards the service center, the main cafeteria. A tiny woman walks the line slowly, collecting whitefish, carrots, salad, bread, fruit, cookies and milk. Her T-shirt reads, "I Am Confused."
As the residents eat, shoveling spoonsfuls of mashed potatoes and chattering among themselves in tongues only they seem to understand, a screeming youth bursts through the door and runs toward a visitor who is seated at one of the tables. He grabs her arm and groans: "Take me home with you, take me home with you." His other arm goes around her and several staff members hurry over to pull him away. Chairs and shoes scatter, his screams bounce off the gray-tiled walls. After 15 minutes, four men carry him out. The residents continue eating.
"Don't mind Danny," a resident named Joe says, absently fingering a thick black birthmark that runs down his forehead and across his nose. "He just goes off sometimes."
Joe is sitting with Rita, who he says is his girlfriend. He is tall, carved and muscular with darting dark brown eyes. She, pear-shaped and soft. Neither are sure of their ages. "I'm 20," Joe says and then looks at the ceiling. "No, I'm older than that. I don't know. I could be 20 and I could be 50."
Both Joe and Rita are residents of Jones Cottage, a high-rise "apartment complex" for the mildly retarded where each resident has a private room. Joe says the two of them get together "for a little fun." Rita giggles, turning her head away. "It's something to do," Joe says.
Life at Forest Haven is what you make it.
Down the hill from the cafeteria is Spruce Cottage, the home for 44 mildly retarded men from the ages of 30 to 80. Smiling residents pour out the door. Billy, a small, jagged-toothed baldish man, takes a visitor's hand and leads him down a corridor decorated with snapshots of the recent Spruce fashion show featuring the men at their houndstooth and hatted best, and stick-figure crayon renderings of the cottage and staff.
Jabbering a kind of "baby talk," as the staff calls it, Billy points to the little red wagon piled with toy trucks and cars he keeps by his bed. His possessions.
Sam, nearly 80, walks shakily down the hall carrying a tin of fish to feed the three cats the staff lets him keep out back. He is the oldest at Spruce, the cats his privilege of age. He's proud of those cats, and though he can't tell you that, you can see it in his eyes as he squats on the ground in the cold, feeding them each piece by piece.
Louis shuffles up and points to a visitor's cigarette, making a smoking motion with his fingers to his mouth. When he is given one, he strikes his palm with a finger, asking for a light. His request fulfilled, he smiles and shuffles away. Later he will repeat similar routines with coffee and spare change for the soda machine. A staff member advises: "You can give him what he wants, but make him ask."
Mr. Smith has a single room he calls "the best in the house." The blue cinderblock walls are decorated with pictures of Jesus Christ. Red and blue plastic flowers and color-coordinated candles still in their wrappers sit on doilies on bureaus and tables around the room, as do six radio-alarm clocks.
"I just like being on time," Mr. Smith says. But he rarely leaves his room. In the mornings he rises at five o'clock, the groaning and coughing of other stirring residents muffled behind his closed door, to tidy up and brew coffee from his private stock.
In another room, the visiting reporter approaches a white-haired man who will be his roommate, but only for the next two nights, the visitor explains. "You'll only be here two days?" says Mr. Bryce, shaking his head."That's what they all say."
The next day brings a chill autumn rain, and streams of muddy water wash orange and yellow leaves through gullies in the patches of exposed dirt that pit the compound. It is lunchtime at The Martha M. Eliot Infirmary, four wings of adults and children who cannot walk, and in the narrow hall of A section, a bony young boy with a fine-haired goatee turns silently round and round in his wheelchair, bumping now and then into doors and walls, a sheet tied around his middle to keep him from falling out.
A 40-year-old woman who looks about 10 stares at the ceiling from her crib, her eyes unmoving and cocked to opposite sides of her head. A thin layer of translucent skin covers her veiny limbs, angled stiffly, entangled. A soap opera plays on a television above her, the red-haired young protagonist weeps softly for the cameras.
Across the aisle is Susan. She is 20, her chart says, and barely two feet long, her body misshapen under her blue and red dress. A rare disease, osteogenesis imperfecta, has shortened and deformed her limbs and made her bones so brittle she can only be moved by two specially trained staff members. One of them walks up and places a bowl of chopped spaghetti and pureed peas by her right ear and a spoon in her right hand. Though she can ony move her wrist, Susan feeds herself, flipping the spoon from bowl to mouth. She gurgles contentedly when a visitor strokes her hair.
An elderly woman who has volunteered for 10 years as a foster grandparent sits in a chair nearby, spooning food first to one stiff child sprawled across her lap and then to another, seated in a wheelchair "These are my babies," she explains, softly wiping one's mouth.
Janet, a 15-year-old, weighed one pound, 13 ounces when she was born at home to a 19-year-old Washington woman. When Janet was three, her mother brought her to D.C. General Hospital, where doctors found her suffering from pneumonia, dehydration and measles, and noticed that she couldn't walk or talk and wasn't responding like a normal child. She was soon ordered to Forest Haven by the court. Her mother hasn't been heard from since.
Janet's big breakthrough came last month, when she finally learned to feed herself, clutching the spoon like a handlebar on a bicycle, waving it hesitantly toward her mouth and finally in. "I just thought she could do it, so I kept trying," says the medical health technician who has worked with her. It took eight years.
Across the street, several hours later in Curley's women's ward, hazy light filters through one of the few windows while a woman and two men, kept there because they were abused by the more violent residents in the men's ward, sit in wheelchairs before a stereo. One of the men has a tom-tom, the other a tambourine. The girl is on maracas and they rock back and forth to the heavy soul sounds of a disco station, beating in time with the music. Tanya crawls slowly around them, lost in her own space and time, wiping her hand on the floor like she's looking for something.
The unit supervisor here on East 2 is Gertrude Green, a licensed practical nurse who has worked the ward for 15 years. She calls her charges "babies," though the oldest is 70. "When I first started," she says, "I didn't think I could do it. I cried for two days. But you get used to it. They are such sweet things."
On the other side of the building, the program "Flo" is on television in Benjamin's ward and the men line a narrow corridor, starting. Charline walks to the set and touches Flo's image with his thumb. Turning slowly, his eyes glazed, he weaves around the others and gazes at a female visitor, hesitantly reaching out and touching her arm. He walks back toward the television and repeats the process.
Meanwhile, the younger boys in West 1 are having milk and cookies. They grab for their rations and go back to perch on chairs, stuffing their mouths. When they finish, they scrape the floor for crumbs. One well-muscled youth does an impromptu ballet, swirling gracefully on powerful legs like Rudolf Nureyev in the center of the room.
Another walks toward a visitor, looks him up and down, grabs his cigarette from an ashtray and pops it in his mouth. Padding back to his chair, he gulps it down with a nod, smiles broadly and goes back to rocking and patting his cheek.
With bedtime near, the visitors leave the building, stopping first to talk with a staff member who has been sitting quietly in a dimly lit room, reading a romance magazine and watching a boy in a wheelchair and a green checkered straight jacket. Drool drips from his lips, blood oozes from one of several knots on his forehead the size of ping-pong balls.
"You must come back for the holidays," she advises. "We make it real cheerful around here."