VI. CHILDHOOD DOOMED:PSYCHONEUROLOGICAL INTERNATY
They're called children with no prospects, not trainable, not treatable. A colleague called these internaty death camps. The situation there is terrible.211
I could not say that I am proud of [that psychoneurological] internat, . . . but in general I believe that everything that can possibly be done in the current conditions is being done . . . And for these [Down syndrome] children [who may come from alcoholic homes], life in an internat is a paradise.212
The desperation among those trying to prevent misdiagnosed childrenindeed any childrenfrom being shunted into the total institutions run by the Russian Ministry of Labor and Social Development is well founded.
While physical conditions in baby houses have improved significantly during the past four years, mainly with the help donated by Western charities and adoption agencies, many of the psychoneurological internaty for orphans classed as imbetsily and idioty have sunk into squalid obscurity.
In the course of our research we learned of at least half a dozen institutions run by the Ministry of Labor and Social Development for orphans classed as imbetsily and idioty where visitors reported alarming conditions. Our own visit to one such internat in February 1998 confirmed that Russian orphans with disabilities are:
· segregated in lying-down rooms where they get a minimum of maintenance and the weakest are effectively left to die;
· confined to barren and dark rooms for control and discipline;
· strait-jacketed in a cloth sack tied at the neck;
· tethered by a limb;
· given excessive sedatives;
· commingled by age and gender;
· denied their right to education.
Human Rights Watch site visit to Internat X
Given the time constraints during our mission to Russia, Human Rights Watch elected to visit an institution that two of our key sources had seen. They asked that we not identify it, for fear of losing access to it.
We shall call it Internat X, a one-story building housing some 145 orphans. It had a lying-down room for forty bedridden children from age five to seventeen, and an empty room with boarded-up windows where twenty to thirty of the most difficult children to control were penned up all day.
Internat X also had several rooms with desks and cabinets which were used as classrooms for some of the other children, but no formal education or rehabilitation were offered to these orphans.
Arriving unannounced on a freezing Sunday in February, we were accompanied by two Russian contacts who had been to the internat before. There we saw scenes corroborating the numerous news reports and interviews with staff and volunteers in other internaty who relentlessly referred to the "utter neglect of the children's human needs."213
We also witnessed the use of restraints and isolation. There was no evidence of education or training for the children. Privacy was nonexistent.214 And the staff told us of the regular use of sedative drugs when children are agitated.215 There was not a shred of dignity left in the orphans' lives.
Human Rights Watch did not find the staff of Internat X to be wantonly cruel; in fact we noted concern and compassion among some of the women who were onduty that day. As it was a Sunday, the director, a physician, was away. The only medically trained staff to supervise the sanitarki was one nurse.
With a staff-to-children ratio of 3:40 (versus the official standard of 1:10), the internat was clearly understaffed. A young sanitarka in the lying-down room told us that she was the only one in charge of all forty children during the overnight shift. The sheer physical demands of cleaning the bedridden children are enormous.216
Of greater significance is the staff's ignorance of the true medical and mental state of the children in their care. They speak bluntly and derisively of the children in their presence, while admitting at times that the children indeed understand what they say.217
They furthermore lack any kind of training to provide appropriate rehabilitation for them, and are largely gripped by a deterministic view that the children's physical and mental condition is unalterable.218
The violations of the basic rights set forth in both international and Russian law are so abundant and self-evident in Internat X that to enumerate them by category would diminish the interplay of prejudicial stereotypes, orphanhood and neglect. The following section, therefore, highlights the human rights abuses we documented within the context of the internat. (Photographs of the children, taken around the time of our visit, appear at the end of this chapter.)
The Lying-Down Room
The children lay in two rows of tightly packed little beds, running the length of a long room with bare walls. Wearing huge, faded cloth diapers, they lay directly on rubber-covered mattresses. The air was warm and thick, and the odor of human waste, mingled with disinfectant, stung the eyes.
The orphans were in the process of getting changed when we walked in and one large, bedridden boy with a bright, alert face smiled at us as he propped himself up on his strong arms and swooped the clean diaper around his waist. The staff said that they change some of the kids seven times a day. "Only a few are toilet-trained, but how could they be? They can't even sit up to sit on the potty."219
Human Rights Watch asked the nurse and a sanitarka about the children's conditions and the nurse replied, "Well they all have oligophrenia." When we returned a blank stare, she repeated, "Oligophrenia. You knowimbetsil and idiot." When probed for more specific conditions, she replied, "Well, some have cerebral palsy, Down syndrome, nervous system trauma. And very often we don't even know what they are here for."220
Motioning to two withering little girls with translucent skin and vacant eyes, the nurse went on:
For example, we have the two little girls who can't eat. We try to feed them, and try to prepare special things for them, but they just throw up everything. They can't take milk, which we have, but they can take yogurt. But we don't get yogurt, and we only have milk. We don't know what to do with them and don't know what's wrong with them.221
Noticing a beaming blond, five-year-old boy walking on the callused sides of his club feet, we asked the sanitarka who was playing with him what his diagnosis was "Oligophrenia." But when we asked specifically about his feet, she replied, "Well, it's the same... imbetsilnost."222
Lying on a nearby bed was another boy with twisted feet, the one who had proudly changed his own diaper. He chatted and responded to one of the Russians accompanying Human Rights Watch, while a staff member explained the organization of the 145 orphans currently here. Her description reinforced our concerns about discriminatory labeling:
We have the children divided into four groups. They're divided by their behavior. All ages are mixed together, according to their behavior. We have them divided, like we divide ourselves up, between the smart and the dumb ones. The smart ones have a room with a television to watch, and some books and a teacher. The stupid ones don't have these things because they don't understand, anyway.223
Human Rights Watch asked if any of the children could read, and all the staff quickly replied, "No, no one reads." But after a pause to reflect, one of them corrected herself:
No, wait a minute, there are two kids, a brother and sister who are fourteen years old. They were raised at home. The father went to prison and the mothersomething happened to her. They can read. When the boy's old enough we're planning to send him to live in town, where there's a place with small apartments. Some of the kids can do work; they work as cleaners, and they can make paper bags.224
One of the other staff added that "they even get money for it, so it's interesting for them." With that, her face flushed and she added, "Some even get married!"225
The staff mentioned another child whom we had noticed when we were walking through the lying-down room. He had a deep voice and appeared to be well into his teens from the waist up, but his lower limbs seemed shriveled under his blanket. With a tone of affection the staff appeared to marvel at the boy's "intelligence":
He talks, understands everything. I can ask him who worked the night shift. He always knows everything that's going on. He has two grandmothers and his father, and they come for special days. He knows about it and remembers, in fact, he'll remind me when they're coming next, and it will be three months from then.226
Later, as we were preparing to leave, we stopped by the boy's bed and one sanitarka said loudly:
He has relatives who visit him, all except his mother. His mother couldn't stand to look at him. She was afraid of him, and she's still afraid to look at himand can't come here to see him. Can you imagine, a mother who can't look at her child?227
The frank, demeaning language spoken in front of the children is a nearly universal feature of Russian custodial institutions and it is spoken not only by the poorly trained sanitarki, but by the doctors and nurses, as well.228 It both reflects the prejudicial stereotype against abandoned children, and reinforces its debilitating consequences.
Confinement in a dark room
Like many psychoneurological internaty run by the Ministry of Labor and Social Development, Internat X has a stark room where twenty to thirty of the "most difficult" children spend the entire day under the supervision of a sanitarka.229 The only items in the fourteen-foot by twenty-foot room are a string of benches lining the perimeter, a blanket on the floor and a row of plastic potties. Planks of wood have been nailed over the windows.
A regular visitor to Internat X corroborated what Human Rights Watch saw in the dark room, in an interview in Moscow:
Inside there's no light, no toys, a couple of benches. They spend all day in confinement there. One time a group of ten or so kids were sitting on the blanket on the floor. It was soaked with urine and the potties were full. The smell was absolutely atrocious. It's suffocating, oppressive.
The kids are all covered with rashes, sores on hands, arms, faces and scalp. They have cuts and scars on their foreheads. Last time I was there the woman in the day room told me, we're not hitting them anymore.230
As Human Rights Watch approached the dark day room, accompanied by a sanitarka and nurse, a dozen children rushed at us, smiling and waving their hands to greet us at the door. Their heads had been shaved and their clothes were tattered. Clamoring to come near us, a couple of them swiftly wrapped their arms around our waists and hugged us hard. Another child came close and smiled with a gesture to stroke his soft, fuzzy head. Others stroked our hands. Few said anything, although a few told us their names.
There were other children in the room, including two small ones rocking themselves on the bare floor. On the bench to the right, a tall, gaunt adolescent girl stared intently with her hands clasped and slightly twisting her torso. "She's one of the most aggressive ones who attacks the others," said the sanitarka on duty in the room.231
In the center of the room stood Galina Kirilova, who appeared to be in her fifties. "I've worked here thirty-seven years, since 1960. Sure it's difficult, but you get used to it," she told Human Rights Watch. Turning with a flourish to scan the children around her, she went on. "Look, these are the rubbish of the place. The worst."232
Asked for the number of boys and girls in her care, the sanitarka guffawed. "Hah! I don't know. I don't even notice. They're all the same!" 233
None of the other staff accompanying Human Rights Watch on our tour of Internat X knew all the names of the children in the dark room that day, and no one knew all their ages. On occasion the staff members disputed the age of certain children among themselves. We asked the children their ages, and many did not know.
In replying to our query concerning the boarded-up windows, the staff told us that they put children here who misbehaved in the dark day room for punishment and applied restraints:
They've tried to break the window and one time one of the children ran away through it and we had to chase him during the night in the village. So it's bad, but we had to hammer wooden boards up over the two windows.
When it's a cloudy day, it's dark in there. They're in there all day. And it makes them nervous. They're nervous. They have to be tied or else they would break the window and try to run away. It's very hard to control them. They're the worst group we have.234
The staff of Internat X were equally forthright about the use of sedative drugs when we asked what they did at night if the children were too active and did not want to sleep, one of the sanitarki immediately replied, "Oh, we give them tablets. We have aminazine. We give them pills to calm them down."235
Some of the children have "too much energy," said Iliana Danilova, the nurse. "In summer we try to take them out for some fresh air for an hour, at least those who can move. The stupid ones have so much energy and so they need exercise."236
Our arrival in the classroom for some thirty "smart" girls came after more than an hour of interviews in other areas of Internat X, which allowed time for the teacher and girls to prepare for guests. The girls, ranging from about eight to seventeen years of age, sat at attention in several rows of tightly packed desks while the teacher stood in the middle.
A pleasant room with cascades of potted plants placed high above the children's reach, the classroom had as its focal point a large television mounted high on the front wall. A few cabinets displayed a limited selection of books and toys, and several pictures and drawings hung on the walls.
The teacher told Human Rights Watch that she mainly played games with the girls. When we inquired about basic education such as reading, she selected one child and instructed her to pick up the grammar-school book in English entitled"ABCs." The orphan, a mature, dark-haired young woman, struggled through a few pages and then the teacher thanked her, adding a shrug. "The others cannot read, because they cannot remember the letters," she told us. Alla Sergeyeva, the sanitarka, added, "They can't be taught to read."237
Seeking to demonstrate other skills among the group, the teacher then pointed out two sisters seated with their hands folded at their desks. She said she wanted them to sing. "There, there. These are seventeen and thirteen years old. Their father killed their mother and now they're here."238
After a pause of shyness, the flush-faced sister in front took the lead and began to belt out a Russian pop song, demonstrating a good voice and an entertainer's flair. Besides these brief performances, the atmosphere in the room was static. Yet it was clear that some of the children had potential for education and training and were receiving neither.
One of the older girls, for instance, approached us with a doll dressed in a turquoise gown she had sewn by hand, without patterns. The teacher and sanitarki praised her and encouraged her to go and get more things to show us. She returned with another dolls dress and a full-sized white robe designed like the lab coats worn by the staff. The articles were meticulously measured and stitched, with matching designs and creative details. As we were leaving she asked if we could bring some plain-colored fabric and a sewing machine the next time we came.239
The scene with this adolescent girl highlighted the stunted abilities and contradictions that are rife in the Russian institutions. While the teacher and sanitarka told Human Rights Watch that they had taught her to sew, it was up to the girl to teach herself to make the clothing. After insisting that the orphans cannot learn anything, the staff admitted that the lack of stimulation they provided the children was a partial cause of their dearth of skills: "So you see, they can do things. But there is really nothing to do in the place."240
The scene in the classroom for smart boys was similar, with the rows of desks, the cheery plants, bright walls and large wall-mounted television looming above. Sitting at a desk just inside the door, the teacher shouted, "Okay, all of you,shut up now and listen to what they have to say," to some thirty boys, some of whom had reached adult height; the youngest was a child of five.
There were even fewer materials for education in the boys' room; indeed the only book was a Soviet era adventure story entitled Brigantina, which one of the taller boys volunteered to read aloud.
The children expressed lively curiosity toward their visitors, and one boy interrupted with excited questions about the flora in the United States. Apparently the self-appointed horticulturalist for the internat, the boy knew a great deal about plants and trees, and pointed to some sacks of seeds which he would be planting in spring to beautify the grounds of the internat.
Except for the fact that the windows were not boarded shut, the two day rooms for eighty "dumb" girls and boys provided the same interminable idleness as the dark room for the "most difficult" children. At the time of our visit we saw about fifteen boys and girls ranging in size, in each of their respective rooms.
The sole furnishings in each room were two benches; neither room had a single toy, table, or chair. A door led to a bathroom next to the girls' room where a sanitarka kept watch over a girl as she was sitting on the potty, through the open door. A crowd of girls sat in filthy, ragged clothes on the floor of the fifteen-foot-square room. On one end of a bench against the right wall, a bone-thin girl sat dangling her crossed legs and staring straight ahead. A long frayed rope anchored her by the ankle to the bench, to "prevent her from running away."241 Her torso and arms were sheathed in a dingy cotton sack pulled over her head and drawn at the waist and neck. Without the sack, the staff said "she would break windows or something."242
On the opposite end of the five-foot-long bench a sixteen-year-old girl was also tethered by a rope that was knotted around her wrists. The hair on her head had begun to grow out from its last shave, and she wore a black dress and white boots. The staff told Human Rights Watch that if she were not tied, the girl would undress herself.243
In the barren room for some forty "dumb" boys, none of them was restrained and most of them were running around. The numbing environment here and in thepurported classrooms for the "smart" orphans was corroborated by the experience of a regular visitor whom we interviewed in Moscow:
These kids are supposed to have modified education, but in the two classrooms there were no education materials at all, except desks and chairs. No materials. One time I went, the kids were sitting in a room, about twenty kids, watching TV. One time, the light was off and they were just sitting there. There's absolutely nothing to do.244
Both of the Russians who joined Human Rights Watch on the visit remarked about improvements in the internat since their last visits in 1997, although this was hard to imagine. Both said that the children in the lying-down room had been lying motionless and staring into space, and it was silent save for the incessant crying. As one noted:
Now there is a radio playing music in the room. The children seem to notice that there are visitors, and seem to make more eye contact. More important, there appears to be more contact between the staff and the childrenthey did not treat them like humans before.245
Unmarked graves and abuse of authority
Indeed Internat X has a troubled past, and some visitors hold the director accountable for it. Some twenty-four children (out of the population of 145150) died in a single year two years ago.246 A Western news agency reporter who visited the place with a colleague in early 1997 was stunned by the steady sobbing of the neglected children.247 Following their visit they learned that one of the staff whohad talked with them was fired, and then that food they had brought did not reach the children.248
In June 1998, four months after we saw Internat X, Human Rights Watch received a report from a regular visitor there that one of the emaciated childrena nine year old girlhad died. The visitor, Sylvia Jackson, thought that the girl had not been getting enough food, and used to go there to wash her. She watched her deteriorate, and saw the girl shortly after she died in the internat.
The orphanage misinformed the visitor of the burial time, and when she arrived, it had already taken place, she told Human Rights Watch. At the site, she saw a lot of unmarked graves, and she learned that the other children from the orphanage were made to dig the grave for the dead child.
According to Ms. Jackson, the director of Internat X told her that she does not report deaths to the authorities in order to keep the $300 allocated to the deceased child per month earmarked for her institution.249
Discovery of Internat Y
In February 1998, during Human Rights Watch's mission to Russia, yet another psychoneurological internat run by the Ministry of Labor and Social Development in a region north of Moscow was exposed by a cameraman from the British network Independent Television News (ITN). The footage was ghastly, and it corroborated our findings from Internat X.
From the driveway, Internat Y is a two-story, beige brick building. From 224 to 230 children, aged five to eighteen years, are housed here, and all are diagnosed as imbetsily or idioty. The cameraman threads through the dimly lit corridor on the first floor, and then stops and turns to a closed door. As it opens a gale of children's shrieks and giggles bursts from inside, and a group of adolescents with shaved heads emerge like zombies, blinded by the glare. At the sight of the cameraman some of them begin to clap their hands and their screeches turn to grunts and growls. The sanitarka, tells them, Stop it. Enough. We have a guest here.
The children appear unwashed, with bruises and scratches on their skin and scalp. Their clothes are torn and filthy, and the camera focuses on a pair of tatteredslippers. The cameraman was told that the children were wearing their only clothes.250
Within minutes about ten children gather in the corridor, including a spastic girl with contorted legs who has crawled out of the room. According to the Russian cameraman, "It was hot like a sauna and the smell was horrible."251
While most of the children smile and point at the camera, a tall, solidly built girl named Marina M. stands against the wall, staring sullenly with down-turned mouth. The staff say that she is thirteen years old and "a Down." Her nose runs and she is biting her puffed, red lips. Her cotton sweatshirt is askew, and falls off her left shoulder. To the right, a girl gazes with her mouth agape.
Upstairs, the cameraman enters a lying-down room much like those in Internat X, as well as baby houses across Russia, and finds rows of children half the size for their age, with spindly legs, lying on small beds. Some are sitting up and rocking themselves. The internats one staff doctor, who has been summoned from home by the director on this Saturday, strolls among the rows of bedridden orphans, none of whom has a stuffed animal or toy.
As the doctor approaches the frail children to demonstrate the severity of their disabilities, she abruptly hoists them up by the shoulders and pokes at their heart and other organs. One child has loose stomach skin which the doctor points out to the cameraman by pulling at it while she talks to him. There is no appearance of any relationship between the staff and children, and no spontaneous effort to comfort the children as the doctor performs the brief demonstrations.
One child she approaches is lying motionless, face down. At eight years old, Tanya is the size of a child less than half her age. She suffers from a heart condition and has very red hands, and groans as the doctor pulls her up to face the camera. Her tongue lies limp in her open mouth, and she is barely conscious. She will die before she reaches adulthood, says the doctor, in front of the children.
Sitting folded over in front of Tanya is a little girl with bright eyes, who rocks and bounces, trying to play with the camera man.
After viewing the ITN tape in Moscow, Human Rights Watch interviewed the Russian cameraman for information about any education or activities provided to the ambulatory children who did not appear for much time on his tape. "They showed me some classrooms, and showed me some games they play," he said. Some got education. But there are so many children with different mental conditions. With the difficult children, it's rough for them.252
The cameraman saw no activities going on in any of these rooms, albeit, it was a Saturday when he visited. When he inquired about the children's names and conditions, the staff replied, "I don't know." As poor as the conditions were, however, the cameraman told Human Rights Watch that the internat was the only place in town where officials found money in the empty public coffers to pay the staff.253
The director, who had been reluctant to allow the cameraman into the internat in the first place, did not tell the him the annual mortality rate among the 224 children. Rather he said that the "prospects" for half of the orphans were "okay," but for the other half, "the prospects were "not okay."254
Those who do reach the age of eighteen will move to a "mental hospital for adults," the staff said to him. Wincing, the camera man told Human Rights Watch that he had been on assignment to several such state institutions, including one for mentally retarded adults. He said, "Thereit will be even worse."255
Within a week of ITN's visit to Internat Y, Human Rights Watch interviewed two Russian welfare workers who had visited that same internat several times. Confirming the description of gross neglect that was obvious from the video footage, they added their own concerns about the deterioration of children's condition upon entry, and the commingling of older children with little ones. The scene they described was chaotic:
When I went, there was a woman who cut long bread in half and just handed it to the children and they just grabbed pieces off of it. Some were on beds without a pillow, or cotton sheetsjust on bare rubber sheets. Others were crawling on the floor, rising up to grab the bread. They were half naked, wearing only shirts. These were the invalids, the ones who couldn't really walk. Because the ones who could walk went into the stalovaya (dining hall)to eat and feed themselves. These invalids were fed in their place, and there were old children with young children, boys and girls all in the same room.0
Another periodic visitor to Internat Y was particularly jolted by the debilitating effect that the institution had had on several children she had known before they were committed there:
WORKER No. 2:
The first time I went there I cried all the way back from the place. When you get there you see only those kids who are invalids. And because the baby houses are under the Ministry of Health, and the internaty are under the Ministry of Labor, there's a really big difference. At the baby house where the children came from they really got treatment. But at the internaty, all they do is feed them. It's horrible there.
There's a dreadful smell, you really need a respirator. They're all naked from the waist down and they wet the bed. You can imagine the smell. There are rubber sheets under them. Or they put them on the potty on the floor. There are older kids who have no continence and don't feel when they're wetting themselves. What I saw there was such a nightmare.
I saw kids just sitting on pots, some were on beds, some were crawling. Some of the deeply disabled ones were sitting on potties and some were fed with bottles.1
In view of the debilitating neglect depicted in the footage shot by ITN on February 28, 1998, it is difficult to imagine that it was much worse when Worker No.2 made her first trip there. "The first time I went in September 1995, it was really bad there. Last time it was better, they'd finished a renovation and it was better."2
Human Rights Watch commends action taken by the Russian authorities to improve the physical environment for some of the children under its care. But we conclude from interviews with a range of doctors, institution staff, volunteers and journalists who have visited all of the internaty in Moscow and various outlying regions, that the state fails to allocate appropriate resources to the critical developmental needs of these children.
One doctor who has directed a large baby house for more than twenty-five years and is familiar with Internat Y and other institutions in Russia told Human Rights Watch, "Internat Y is bad, but there's one like it in every region of Russia. And not only one."3
Additional reports from visitors to other internaty heighten the need to put an end to commingling of different age groups. One charity volunteer described to Human Rights Watch how older orphans of the psychoneurological internat change and clean the bedridden ones:
In the internaty, a lot of the main caretakers are the older inmates. If they're put to work feeding and taking care of the kids, there's potential for abuse. Everything I say here, I have seen ten times. In some you'll get a fifteen-to-sixteen-year-old perfectly normal child, wrongly diagnosed, looking after these children who are "becoming" imbetsily themselves.4
A Western journalist who traveled to a number of internaty for feature articles on the state of internaty echoed this observation to Human Rights Watch as well:
You must remember that the people who are changing the babies and clothes are often the older "debily," who are not qualified. I saw a big guy pick up a child by his hands and feet to transfer him to the next bed to change.5
During our mission to Russia, a third internat for orphans with disabilities was featured in a lengthy article in the Moscow Times on February 7, 1998, about children with Down syndrome. Human Rights Watch interviewed the journalist, who asked that we not identify the institution, despite the fact that her research indicated that it was "one of the smaller and better ones in Moscow."6
Clean, fitted with new curtains and a new coat of paint on the walls, Internat Z is home to 150 children. Although the staff are overworked, they know the names of all the children.
It is especially noteworthy that Internat Z does provide education to the children who are classed as imbetsily and debily.7 The journalist found that most of these older children had learned to read and write, and one of them had just started working as full-paid member of the staff there. The child had somehow inherited an apartment as well, and was going to live outside. The younger children with lighter disabilities were taking music lessons, and at the time of her visit, they were making Christmas cutouts. 8
Yet even in this "good" internat, the journalist told Human Rights Watch, there was no education at all provided for the children with the severest classification as idioty. And she described the lying down room to Human Rights Watch as "just horrific":
There were three tiny children. They looked about eighteen months old. Completely emaciated, wasted legs. One was in a straitjacket; the other two were dyingcompletely lifeless. Then there were four or three older children lying in beds with cerebral palsy as far as I could tell.
There were four children in a playpen with no toys. One was screaming, screaming, screaming. And two other were prostrate, face down and hunched over, like in fetal position.9
General observations on abuses of orphans classed as imbetsily and idioty
Malign neglect of medical needs
As in Russia's baby houses, children in the internaty of the Ministry of Labor and Social Development are often passed over for needed medical or surgical treatment. Dr. Anatoly Severny, a child psychiatrist and leading critic of the cycle of discrimination against abandoned and disabled children, described the problem in an interview with Human Rights Watch:
In the internaty they really don't treat the children as if they're people. These children are viewed as hopeless. Recently a colleague of mine who is a psychiatrist in an internat transferred a child to an infectious disease hospital. The hospital refused to place that child in intensive care, because supposedly there is a directive not to spend money on expensive medicine for children with a mental disability. The child had cerebral palsy and had a lung infection. In Russia there's always been a system of unwritten rules: supervisors give oral instructions and nothing is written.10
Human Rights Watch interviewed Dr. Severny's colleague, who provided further details on the eight-year-old boy who was denied medical care:
When we tried to explain they were violating the child's rights, and that he should be in intensive care, they said, We just do what we can do. And they refused. It's true that he has severe pathology. The boy had pneumonia, respiratory infection, cerebral palsy, and he has a problem swallowing food so that it goes down his windpipe. He's very skinny because he cannot be fed, and he looks more like five years old. But he is responsive, he reacts. We called every day to check on the child, and he's still alive!11
Again, as Chapter IV of this report documented the malfeasance and neglect concerning medical referrals from baby houses, this case illustrates the disadvantages of abandoned and disabled children in internaty who are truly without parents:
The surgeons refuse to operate on the heart because the operations are expensive. If this child lives in a family, the parent insists on surgery and sometimes gets it. Sometimes they obtain money somewhere, but those in internaty never get such operations. Children with disabilities like this will not be cared for even when they're in the maternity hospital. Really, these children are not examined properly. We can't get special medical care for them.12
A similar case in Internat Z was featured in the Moscow Times article on February 7, 1998. In the following excerpt, the chief psychiatrist at Internat Z expresses the prejudice that denies orphans like Tanya Chekhovskaya a life-saving heart operation:
Tanya smiles as Lydia Petrovna, the chief psychiatrist at the internat, or home for disabled children where she lives, declares to a visitor that the girl suffers from acute mental retardation; the worst kind of oligophrenic (small brain); an idiot.
Tanya smiles as the doctor explains that Down Syndrome children go through phases of being evil, sullen, and withdrawn, as well as times when they are happy to dust furniture if lavishly praised.
Tanya even smiles as the doctor describes how the Moscow cardiological center deemed her unsuitable for a heart operation on which her long-term survival depends because the center does not waste resources on disabled children.
As Petrovna continues describing how children with Down syndrome are incapable of playing with toys, let alone learning to speak, Tanya slides out of her chair and begins to explore the room, chattering happily to herself as she moves. She discovers a piece of patterned paper in the trash can. Ineducable Tanya repeats, after she hears them spoken, the names of each of the colors."13
Excessive use of strong drugs
The reports of sedatives being used in Internat X were substantiated by a Moscow psychiatrist interviewed by Human Rights Watch. She explained how, in the previous internat where she worked, every evening a nurse gave the children a psychotropic drugtizercine, relanium or aminazineall without a doctor's prescription. "There's a slang term for thatukol beznormwhich means 'injections without doctors' orders.' "14
Dr. Anatoly Severny told Human Rights Watch that children he has seen in institutions have also told him about the administration of "ukol beznorm."15 Asked about the drugs that are commonly used, Dr. Severny told us:
The regular ones are: aminazinea neuroleptichaloperidol, and neuleptil, which especially retards strongly, and is given for restless behavior. Other drugs are ceduxen, relanim, nazepam, rudotel. These drugs can actually retard the child further. You can quite surely say that this is a common practice. For internaty, that's for sure.16
Russian Orphans classed as imbetsily and idioty are subjected to a lifetime of malign neglect, deprived in some cases of their most basic right to life. The malfeasance on the part of the Russian authorities, notably the Ministry of Labor and Social Development, is all the more deplorable in light of the remarkable recoveries achieved by a group of orphans who were permitted to enter the care of several ordinary volunteers from Russian society.17 The dramatic results of this effort are presented in Chapter VIII of this report.
But first, the unique genre of corporal punishment and gratuitous violence encouraged in orphanages for school-aged children is documented in Chapter VII.
211 Human Rights Watch interview, Dr. Anatoly Severny, Moscow, February 12, 1998
212 Natalia Tsibisova, Director of Residential Institutions, Moscow Committee for the Social Defense of the Population, in Natasha Fairweather, Removing the Mask of Down Syndrome, Moscow Times, February 7, 1998.
213 Human Rights Watch interview, Natasha Fairweather, February 20,1998.
214 On the matter of privacy in Russian institutions, a Russian journalist we are calling Marina Stepanova, who had visited a number of orphanages and internaty summarized what others had told Human Rights Watch. "There is no word for 'privacy' as you know it in Russian. The closest thing is 'your personal affairs,' but it's not what you're referring to. But you know, it's not different in the Russian schools, or kindergartens, and institutions like the army, which were supposed to discipline children. There are no locks on the doors. And in the schools, often the bathrooms have no doors. So the bosses can watch that the kids don't lock themselves in the toilet and smoke for an hour. It's different for adults, but that's how it is for children." Human Rights Watch interview, February 15, 1998.
215 Human Rights Watch interview, Alla Sergeyeva (not her real name), sanitarka, February 15, 1998. We have changed all the names of staff we interviewed to protect identities.
217 Human Rights Watch interview, Alla Sergeyeva, Lyuba Fokina , February 15, 1998.
219 Human Rights Watch interview, Iliana Danilova, February 15, 1998.
220 Human Rights Watch interview, Alla Sergeyeva, February 15, 1998.
222 Human Rights Watch interview, Lyuba Fokina, February 15, 1998.
223 Human Rights Watch interview, Iliana Danilova, February 15, 1998.
224 Human Rights Watch interview, Alla Sergeyeva, February 15, 1998.
225 Human Rights Watch interview, Iliana Danilova, February 15, 1998.
227 Human Rights Watch interview, Lyuba Fokina, February 15, 1998.
228 Human Rights Watch interview, Sarah Philps, February 23, 1998; Natasha Fairweather, February 20, 1998; Marina Stepanova, February 11, 1998; Western journalist, February 17, 1998.
229 Human Rights Watch interview, Iliana Danilova, Alla Sergeyeva, February 15, 1998.
230 Human Rights Watch interview, Sylvia Jackson (not her real name), February 10, 1998.
231 Human Rights Watch interview, Galina Kirilova, February 15, 1998.
234 Human Rights Watch interview, Alla Sergeyeva, February 15, 1998.
236 Human Rights Watch interview, February 15, 1998. One of the Russians joining Human Rights Watch on our visit to Internat X explained that the comment on excess energy among the "stupid" children derives from the belief that they do not use mental energy. Human Rights Watch interview, expert on internaty, Vyacheslav Voronin (not his real name), February 15, 1998.
237 Human Rights Watch interview, Alla Sergeyeva, February 15, 1998.
238 Human Rights Watch interview, teacher, February 15, 1998.
239 Human Rights Watch interview, orphan, February 15, 1998.
240 Human Rights Watch interview, teacher, Internat X, February 15, 1998.
241 Human Rights Watch interview, Alla Sergeyva, February 15, 1998.
244 Human Rights Watch interview, Sylvia Jackson, February 11, 1998.
245 Human Rights Watch interview, child welfare expert and journalist, February 15, 1998. The heating system had also improved since winter 1997, when it was so frigid that the staff were wearing their coats and hats indoors.
246 Human Rights Watch interview, Sylvia Jackson, February 11, 1998.
247 Human Rights Watch interview, Western journalist, January 22, 1998.
248 Ibid. This could not be confirmed with the director who was not on duty the day of Human Rights Watch's visit. We did not contact her.
249 Human Rights Watch interview, Sylvia Jackson, June 10, 1998, October 22, 1998. Exchange rate as of March 1998.
250 Human Rights Watch interview, Russian cameraman, March 4, 1998.
252 Human Rights Watch interview, Russian cameraman, March 4, 1998.
0 Human Rights Watch interview, March 5, 1998.
1 Human Rights Watch interview, Worker No. 2, March 5, 1998.
2 Ibid. Human Rights Watch received a report in October 1998 that conditions in Internat Y had improved further, and that officials in that region had initiated an experimental program of an ombudsman for children. We commend such efforts, butremain deeply concerned about the pervasive features of the custodial system already mentioned in this report which violate the fundamental rights of disabled children to live in their families and develop to their full potential.
3 Human Rights Watch interview, Dr. Mikhail Airumyan, March 5, 1998.
4 Human Rights Watch interview, Sarah Philps, February 23, 1998.
5 Human Rights Watch interview, Sam Hutchinson, February 17, 1998.
6 Human Rights Watch interview, Natasha Fairweather, February 12, 1998.
10 Human Rights Watch interview, Dr. Anatoly Severny, February 12, 1998.
11 Human Rights Watch interview, Dr. Tatiana Moroz, psychiatrist, February 12, 1998.
13 Natasha Fairweather, "Removing the Mask of Down Syndrome," Moscow Times, February 7, 1998.
14 Human Rights Watch interview, Dr. Tatiana Moroz, February 12, 1998.
15 Human Rights Watch interview, Dr. Anatoly Severny, February 12, 1998.
17 This project was organized by the newly formed, independent Russian group, the Down Syndrome Association.