Russia’s Forgotten Children

Some of the children are in straitjackets or tied to their iron beds with sheets. Some lie in barred cots, flapping their arms and legs. Twelve-year-old Sasha, standing half-dressed in a corner, is rhythmically bashing his head against the wall.

This is life at Home No. 11, one of the worst of Russia’s many facilities for mentally disabled children, forgotten pockets of hell tucked away on the concrete fringes of towns, behind walls and barbed-wire fences patrolled by dogs.

Their purpose? To remove children judged to be useless to society as far from ordinary life as possible, shutting them away in Dickensian institutions that are starved of both funding and qualified medical help.

The children’s homes of modern Russia are perhaps one of the last vestiges of a repressive Soviet system of social control, which deprived anyone judged physically, mentally or politically imperfect of the most basic freedoms, and where there was no court of appeal for the wrongly condemned.

“These homes are a little gulag kept secret from everyone,” said Sergei A. Koloskov, head of the Russian Down’s Syndrome Assn. His efforts to change the system have included smuggling out to the world film last year showing the grim reality of Home No. 11.

“The system persists because of a widespread belief that mentally retarded children are subhuman,” he said. “It’s part of a huge national tragedy. This is not an intentionally created repressive machine; things just worked out that way. But these kids have no protection. They can be saved only by major reform.”

Even discovering the number of children involved is difficult. Child psychiatrist Valery A. Doskin said no overall statistics are available because these children fall under the jurisdiction of three ministries--health, education and social welfare--and each jealously guards its own secrets.

To make things worse, activists such as Koloskov say, many children are wrongly classified as retarded. Getting them out of the homes is virtually impossible, they say, not only because Soviet thinking persists in administrative bureaucracies but also because there are financial incentives to keep them there.

Margarita N. Guslov’s teenage son Petya is an inmate of Home No. 11. She rails against the indignity of the treatment meted out to him by uncaring, untrained workers on the wards, which she sees on the rare occasions she is allowed inside. Outsiders are barred from visiting the home’s “bad” wards.

“I’ve begged them so many times to let the parents help. But they won’t,” said Guslov, the briskly groomed head of a day-care clinic for teenagers. Her natural air of authority fades to bewilderment whenever she talks about her son.

“These are big boys, 15 or 16, but the nurses force them to go to the toilet on kids’ night pots. But they’re big, they’ve outgrown them, and they miss all the time. It’s humiliating.”

“I took my son for a walk in the grounds, leaving the nurse on the ward watching television,” added her husband, Sergei. “When we came back she was still just sitting there in a doze, although one of the children had broken a window.

“So I told her there was broken glass on the floor, and she just went on watching. She couldn’t care less. I touched her on the shoulder and said again that there was a broken window. ‘Yeah, yeah,’ she said, and yawned. ‘I’ll clear it up in a bit.’ ”

An Uphill Struggle

Koloskov, a pianist who took up the cause of retarded children when his 9-year-old daughter Vera was found to have Down’s syndrome, is one of a small number of private individuals who are trying to change the system.

Moscow now has a handful of private homes that offer these children foster care. Activists play with children in some state homes. Koloskov runs a help line so parents can learn to bring up their children at home, as he has.

But, he admitted ruefully, they face an uphill struggle.

The Western ideal of accepting the mentally disabled as valued members of society, bringing them up at home or in foster families and offering them love and educational stimulus has not yet caught on in Russia.

Soviet thinking denied most of these precepts, demanding service to the state, and held that Communist society was inexorably moving toward a perfect future and a perfect individual. Those who were not “perfect” were excluded from society.

Even today, it is rare to see mentally or physically disabled people in public. It is the belief in and glorification of the perfect person--through sport, mass rallies, etc.--that led people to accept passively that those who were not perfect were in some way subhuman. They had no rights and could be used in any way the state wanted.

“Man, in the Soviet view, is valuable only to the extent that he is of advantage to society. . . . He is a means, not an end,” said Soviet-educated psychiatrist Dr. Anatoly Koryagin.

The Russian state, like its Soviet predecessor, still begins its surveillance of children at birth.

Doctors on maternity wards encourage mothers of babies with detectable abnormalities to hand them over to the state for lifetimes in institutions. The stigma of giving birth to “imperfect” children is immense, Koloskov said; it is often taken as the result of a debauched life of alcohol and drug abuse or of sexual disease. Most mothers gratefully accept the advice.

“You must understand that if a mother has such a child, then the family will be unhappy,” psychiatrist Doskin said. “I have close friends who chose to keep their invalid child, and it ruined their marriage and their lives, leaving them joined only by unhappiness. It’s important for mothers to know what lies ahead if they keep these children.”

Children who show no signs of illness at birth but fall behind in school are sent off for further tests by child psychiatrists.

They risk being found to be feebleminded, or oligophrenic--a catchall term for any form of mental problem, borrowed from 18th century French usage and subdivided into three categories: debile (weak), imbecile and idiot.

Any of these primitive diagnoses condemns the child to life in a home.

Once the word “oligophrenia” is on a child’s file, it is extremely hard to change the diagnosis if the child later shows signs of improvement or if the often sketchy doctor’s examination is wrong.

“There is a tendency toward ‘hyper-diagnosis,’ or painting a worse picture than really exists,” said parliament member Valery V. Borshchev, a human rights campaigner. “This is wrong. It paralyzes the will of doctors later to do anything to change the patient’s condition and thus the diagnosis.”

One of the most worrisome aspects of this tendency is that there is a financial reason for it. The homes get more money for oligophrenic children.

Valentina F. Matveyeva, head of Baby House No. 17, revealed the arithmetic. Her home of 100 children under 7--including 40 classified as oligophrenic--was promised funding of $600,000 in 1997. This works out to $50 a month for each child. But the children classified as oligophrenic are also entitled to an invalid pension of just over $60 a month.

“Of course, the children themselves don’t get the pensions,” Matveyeva said. “We set up their accounts and collect the money. They wouldn’t know what to do with it, and we need it to keep the homes going.”

The label “oligophrenic” has devastating implications.

“Oligophrenic orphans are a completely uninteresting subject, and I don’t understand why people make so much fuss about them,” said Maria D. Bazhenova, the head of social welfare in southeast Moscow, whose responsibilities include Home No. 11. “It makes much more sense to concentrate on normal children, who will grow up to be full human beings and repay our attention.”

Noted Moscow human rights worker Valery Fadayev: “Because someone on a high level once decided that all these [children] are handicapped for their whole lives and can’t be changed, it is not thought necessary to care for them or do anything about them. And the only thing they can do for society is to work as cheap labor.”

Those most likely to fail the intelligence tests are the youngest of the children who live in overcrowded, understaffed homes where workers have no time to play with their charges. Children penned up without stimulation have less chance of passing conceptual tests, which typically involve giving abstract names to groups of objects--horse, tiger, cow--that they have never even seen.

“Oligophrenics and orphans are the same thing,” said Vladimir Kozyrev, director of Kashchenko psychiatric hospital. (In Russia, all children who live in state homes are known as orphans.)

By the age of 7, orphans are assigned to different types of homes according to their mental capability. Orphans without disabilities are sent to homes run by the Education Ministry, where they receive a full high-school education even if they are not lucky enough to find adoptive parents.

Children labeled oligophrenic go to homes run by the Social Protection Ministry, some for the “debile” and others for “imbeciles and idiots.” Because they are judged ineducable, these children receive little teaching--perhaps two or four years of the normal nine-year education program.

“The conditions in which the children are living can be described as nothing short of an appalling abuse of human rights,” said Neilian Roxburgh of the charity Action for Russia’s Children, or ARC, an international group that is trying to reform the system.

Lost in the Homes

In these homes, the children are forgotten by the world.

Acute cash flow problems cripple even the few homes that are run with care and attention. Svetlana V. Andreyeva, director of Home No. 7 in southeast Moscow, can pay her helpers only $30 a month--not enough to pay for transportation to work or to enable them to feed themselves.

Only the desperate, the incompetent or the mothers of children in the home, including Andreyeva, will work there. Half the helpers’ jobs are unfilled.

Although Andreyeva’s workers treat their charges with unusual affection, they discourage childish high spirits or adventurousness. It is just too much to cope with when they are looking after groups of 20 or 30. So the quiet, disciplined dormitories are empty of personal toys, pictures, books and the clutter of individuality, bearing eloquent witness to a life of sensory deprivation.

But Andreyeva’s “imbecile” children, given more attention and schooling than most, do sometimes flourish to the point where she tries to get them reassessed as “debile” by the medical commission in charge of their diagnosis.

For an “imbecile” child, even getting the milder diagnosis of “debile” is a new lease on life. Instead of an adulthood in a special state hostel, doing unpaid factory work with no freedom to marry, drive or vote, they gain the possibility of getting simple jobs in the real world and living in the community.

Many of her charges do have profound and visible learning difficulties. Yet several of them, clustering around visitors’ cars, learning arithmetic or sweeping snow from the drive, seem no less bright and articulate than children elsewhere.

But, Andreyeva said, her attempts to get her charges reclassified almost never work.

Classification Mistakes

Territorial jealousy among ministries could help explain why it is so hard for children mistakenly labeled as oligophrenic to get a clean bill of health.

Roxburgh told the story of Sasha Rusanov, a 10-year-old orphan who had gone to Home No. 7 after being categorized as an “imbecile” when he was 3. Sasha’s problem was a cleft palate, which made his speech indistinct. Two operations had been botched.

After a third operation, and speech therapy by ARC, Sasha was reassessed by a speech therapist. Astonished by what a bright child he was, the therapist removed “oligophrenic” from his diagnosis and recommended that he be sent to a home for children without disabilities.

Then trouble began between bureaucrats. A new home, run by the Education Ministry, was willing to take Sasha, but only if the Social Affairs Ministry, which had controlled his destiny as an “oligophrenic,” would also reclassify him. It ran tests on him--but came up with its original diagnosis. Sasha is now waiting for a third try at reassessment.

Specialists from Christian Solidarity International, a British human rights group, carried out a 1991 survey of “imbecile” children.

They found that more than one-third of those they tested in St. Petersburg had been misclassified and were of average or above average intelligence.

But Andreyeva, like most of the medically unqualified staff working in children’s homes, has an almost religious respect for doctors. However frustrated she might be by her failure to get children from her orphanage reassessed, it never crosses her mind to think that the doctors on the commission might be wrong.

She believes that the doctors are above her in the social order and that their decisions cannot be faulted. In the same way, she accepts without question that the children she cares for are at the bottom of the human pyramid--flawed creatures whose lowly status can be fine-tuned but not altered enough to give them a completely clean bill of health.

Asked whether the commission officials might be mistaken when they refused to change a diagnosis, or were just lazy, or covering up for colleagues, she shook her head trustingly.

“Oh, no,” she said. “They understand these things. They’re doctors. Specialists.”