SCENE: Several dozen "children" are locked in a large yellow room whose floor slopes toward a center drainage hole for human waste. Most of these "children" are, in fact, retarded teen-agers and adults who have developed the mental capacity of someone who is a year or two years old. Most are wearing only diapers. Several are running from wall to wall banging their heads. Others jump up suddenly for no apparent reason, twirl rapidly around the room and then sit down abruptly. A number of them wear helmets to protect their heads. Others wear sheets binding their arms against their bodies so they cannot attack others, or themselves. Some children skip constantly. Others lie on the floor staring, the living dead. Many are screaming or making bird noises. The stench of human waste and the bedlam are intolerable. It is spring 1973 in the Curley Building of Forest Haven, the District's institution for the retarded.
Seven years later, these same "children" are all dressed in shirts and pants and socks and shoes. Some are sitting quietly on plastic chairs along-side the wall, others are seated at a table in the middle of the room. Most are tranquilized. A few are heavily sedated and asleep. Several walk up to touch their visitors, shake hands, trying to talk. Many are physically deformed and most are missing teeth. They are all still profoundly retarded. A few still wear protective helmets, but most are now toilet-trained and some can even put on their own shoes and tie them. Most can feed themselves. They have learned, like children, to control some of their behavior.
Shirley Rees was there in 1973 and she is there now. She uses the word "caring" a lot when she describes why the retarded people in her unit have improved. She uses it when she speaks of Al Russo, the retired director of the District's Department of Human Resources, who used to visit the institution every two weeks. And she uses it when she speaks of Joe Yeldell, Russo's predecessor, who did not.
Rees says the changes came about when people realized that "even if a person is labeled profoundly retarded they can still be taught basic life skills." She says that 85 percent of the people in the Curley Building are toilet-trained, compared with 40 percent before. "Most are feeding themselves and even using a fork. Once a month they go into various restaurants. Some of them who are profoundly retarded, we even arranged a tour of the White House for them. They're in the Special Olympics. They go swimming at the Sharpe Health Center once a week.There are programs for the blind in which they leave the grounds and go to a therapeutic recreation center in D.C. They go to basketball games and hockey games at the Capital Centre. The residents are testing higher. It's the staff who gets the credit -- these nursing assistants who sit there day after day and day, 'Do this, do that.'"
Rees says it might take six months toteach a profoundly retarded person to tie his shoes, five months to pull on slacks. "The time that goes into one small item, this is what people don't understand. We had a client who wouldn't use a spoon correctly because she just wanted to eat so rapidly. She'd use her hands. The staff person literally stood behind her when she was eating. It took four months to slow her down. It's exciting when you see little things. Maybe some day someone is going to get up and go into the toilet and come back and sit down."
Now, she says, the people living in the Curley Building realize "that life doesn't consist of that one room they've been living in." They see how other people behave in restaurants and at the Capital Centre, how other people wear clothes. They are stimulated by outside activities and such simple things as putting together a puzzle. "If you're sitting there are all of a sudden you jump up or bang your head against the wall, you're trying to stimulate yourself. You or I could sit and read a book, but they jump up and hit the wall."
The changes began happening in the mid-1970s, she says, when Forest Haven got some money to hire more staff people who were taught behavior modification techniques. Shirley Rees left the institution in 1973 because she couldn't stand what was not being done for the people living there. But three years ago she left a comfortable job downtown and went back. "I enjoy working with them. They were getting money. There was a possibility you could do a great deal."
People who work at Forest Haven say they are afraid the conditions there are going to start deteriorating again. Care of the retarded people living there, far from perfect, is being threatened by a lack of money and by a requirement that its staff must live in the District. The people who run Forest Haven say they need more teachers, speech pathologists, occupational therapists, physical therapists, maintenance people, plumbers. They need more money to pay the inflated prices of gasoline, food and clothing.
And they need more money to continue a program, ordered by a federal judge, under which 110 profoundly retarded people are supposed to be transferred out of the institution this year into foster and group homes in Washington. Only 14 people have left Forest Haven so far this year because it takes money to teach a profoundly retarded person how to survive outside an institution, and money is something Forest Haven doesn't have.
They hope the mayor and the City Council will appropriate $2.1 million in extra money just to keep the limited programs going, but they know the City Coucil is determined to balance its budget. They hope the City Council will care, but they aren't sure it will. They're afraid Forest Haven is going to be forgotten again.
Forest Haven is not a place you can ever forget if you've been there. But the people who make decisions about institutions don't always go and see the conditions or the people whose lives they are affecting. Some, like Al Russo, cared and the people who worked for him knew it and it made a difference. Some judges, like U.S. District Judge William Bryant, care and go and visit places like the D.C. Jail when they are considering claims by inmates that the institution is intolerable.
But there is a terrible history of neglect at Forest Haven, of people making decisions based on papers and not on people. In 1976, some relatives of people at Forest Haven sued the District government, claiming that the conditions there, too, were intolerable. Two years later, U.S. District Judge John H. Pratt signed an order calling for a massive overhaul of conditions there and the establishment of a program to move these profoundly retarded people back into the community. But Judge Pratt doesn't know about the big room in the Curley Building, how it looked in 1973 or how it looks now. Judge Pratt has never been to Forest Haven.