IV. THE “GILDED CAGE” OF THE DOM REBYONKA: INFANCY TO FOUR YEARS116
You'll see a child lying on a cot staring at the ceiling, obviously in terrible need of love—I have heard the staff say in all innocence to me, "We told the mother ‘don't bother to come to visit.’ The child doesn't understand anyway.”117
Introduction
Of all the institutions for abandoned children in Russia, the 252 baby houses for orphans from zero to four years of age have greatly benefited from a flood of international charity. Yet beyond the playrooms and dormitories brimming with donated toys and bright new furnishings, the minimal care and therapeutic intervention in most baby houses prompted one baby house doctor with decades of experience to describe the average institution as a “gilded cage.”118 The evidence gathered by Human Rights Watch indicates that at this early stage in orphans' lives, their rights are systematically violated by prejudicial stereotypes; segregation and severe neglect of babies with disabilities; denial of medical services; abuse of sedative drugs; and deprivation of the opportunity for individual development.
Lying-down rooms—gross neglect of infants with disabilities
In a world apart from the daily life of Russians, the lying-down rooms of the baby houses are yet another world removed. According to a volunteer who has visited a vast number of baby houses, they all had at least one, lined with fifteen to twenty bedridden children.119
Throughout our interviews with volunteers and regular visitors to Russian baby houses, the extreme neglect of those who are segregated away in the lying-down rooms was frequently described. The pattern is captured in the following testimonyby a photographer who has visited more than a dozen baby houses and psychoneurological internaty since 1997:
About twenty kids were lined up in cribs. Bottles were propped up against the crib and they were in a vegetative state. In one there was a kid six years old the size of a two-year-old. All this goes on in the same institutions where other kids are running around. They're clearly neglected by comparison.120
One volunteer showed Human Rights Watch a photograph of an eight-year-old girl who was allowed to stay unusually long in her baby house while volunteers searched for a home for her:
This little girl has mild cerebral palsy in her legs and because of this, she's about to be diagnosed as retarded and sent for life in an internat of the Ministry of Labor and Social Development. Look at this! They make her sleep sixteen hours a day. She's eight years old and she's made to stay with three-year-olds. She gets no stimulation.121
Compounding a stigma with multiple diagnoses
The lying down rooms of the baby houses are only the most ghastly product of a conundrum of stigmatization that begins before the baby opens his or her eyes. First the baby is abandoned and diagnosed with developmental delays. Then, the addition of further diagnoses compounds the original stigma of abandonment. The long-time director of a Moscow baby house succinctly described this conundrum of "abnormality":
All the babies are problematic, maybe some more or less, but they're all problematic. Because if you understand: take the situation when the mother wants to throw away the baby. If parents are normal they'd never allow it. So that means that the families are not normal. And what can the state do if the children have no mothers? Of course we try to do our best.122
Starting from behind with a provisional diagnosis of zaderzhka (delay), Russian infants soon acquire a raft of conditions in their medical charts which they may be unable to shed as they move through the state institutions.
The philosophy of health care in Russia is different from the U.S. It's more like Europe by the way doctors are trained to address relatively minor things more seriously than in U.S. They make a list of diagnoses, but are simply describing "risk factors," to let other doctors know: maternal risk factors, infant risk factors.123
But Dr. Rybchonok went on to say that children in Russia are especially put at risk by the ambiguity of the records, because very often the records “are not dated." He explained:
There’s a signature of the physician, but there’s no date. But what’s more important, there’s almost never a date when the diagnosis was first given, or a date when the condition was resolved. It’s very unclear if the child had problems chronically or just after birth. Mostly they copy the previous list of diagnoses and then don’t date it.124
Repeatedly Dr. Rybchonok stressed to us, “ If this diagnosis is not true, it's really a disaster for an individual.”125
Doctors and the other experts in child development whom we interviewed for this report frequently criticized this diagnostic tradition. We were therefore particularly dismayed to note that a concise critique of this practice of “over-diagnosing” was presented as long as three years ago to the Council of Europe by an expert team who visited Russia in June 1994.126
The experts reported that Russian psychological norms are based on very strict criteria. Apart from these norms, however, factors that in the West are considered as being simple medical risks, will, in Russia, be labeled as illnesses:
· babies born to alcoholic parents or whose mothers suffered depression during pregnancy will be labelled encephalopathic and remain so until they come of age.
· orphans will be classed as being mentally deficient.
· children with a single physical malformation (a harelip or speech defect...) become subnormal in the eyes of Russian doctors."127
Human Rights Watch also found that these early diagnostic practices interfere with a child's right to full development and in certain cases, to life, itself. Moreover, abundant information gathered in Russia indicated several crucial incentives behind "over-diagnosing" that suggest violations of basic medical ethics.
According to a former charity worker who distributed assistance to impoverished baby houses and has travelled widely in Russia since 1991, one legacy of the Soviet medical bureaucracy encourages hospital staff to avoid any risk of sanctions for errors detected under their care. For example, she recalled the case of a child she knew well who had a medical chart with a catalogue of conditions including oligophrenia and encephalopathy.
A doctor told me that they have to cover their butt. They could lose their job, so they write many diagnoses. And you know the penal system here. It's a “better safe than sorry” system.128
A second factor that encourages exaggerated diagnoses, is the Russian law which until recently, prohibited international adoption of "healthy" children. "Thedoctors in the system wanted the kids adopted, so they'd say that this child has a tumor and then “wink” at you.129
Finally, a widely cited incentive for over-diagnosing is the extra financial subsidy and salary increment that the state grants to institutions that care for children with disabilities. The entitlement to these subsidies was confirmed by children's rights activists as well as by staff of state institutions.130
One volunteer who worked in a Moscow baby house for a year and a half recalled to Human Rights Watch,
Once, in a rare honest moment with the acting director, she told me, 'We are considered as a medical facility because more than half our children are considered to have medical defects.' So they could finagle more money for the place. 131
Another baby house director told Human Rights Watch, however, that the subsidy does represent the greater burden shouldered by the staff in dealing with disabled children, even though the salary levels remain very low and do not attract specially trained personnel:
A pedagogue in a baby house who works here, for the Ministry of Health, will get a 20 percent higher salary than from another ministry. Yet what should we be talking about if the salary of a doctor is only $100 a month? Of course, all these places with "problematic kids" get higher pay because we have to deal with all the kids, including the problematic ones.132
Debilitating effects of institutional deprivation
It is by no means only the “problematic kids” who suffer setbacks from institutionalization in Russian baby homes. Dr. Rybchonok, who has examined avast number of children from Russian institutions, described the broader impact of deprivation:
I see children who've been institutionalized after parents lost their parental rights. If the kids lived with their parents even two years, they are very different. They don't look like institutionalized children. They've been loved. Even in an alcoholic family, the child could be smaller than normal and could be abused. But the child still looks different.
Those children who have lived all their time in an institution are really special. Because of being exposed to sensory deprivation after two years, they have no social skills, they don't grow that well, some are off the growth chart. That's the big impact. That's the negative side of the institutions. If someone's trying to find that situation, look at the last century. There's a high risk of disability, attachment disorders. That's just through sensory deprivation.133
Recent research on the developmental challenges of children adopted from orphanages in Eastern Europe and the former USSR shows promising evidence that children can make remarkable recoveries from the deprivation of institutional life.134
But most of Russia's orphans, including those deemed officially "normal," will never enjoy the opportunity to leave institutional life for a family environment where they can catch up on their time lost. The majority of Russia's orphans will be stuck for all their formative years within the tunnel of state institutions, only to emerge when they reach the age of eighteen. Moreover, those who have been wrongly diagnosed as "ineducable" will lose any opportunity to catch up.
Human Rights Watch asked a long-time director of a baby house to compare specifically the developmental opportunities for orphans reared in Russian institutions with those of children raised in families. She replied:
There's a big difference. First of all, the deprivation of a mother is the lack of personal love. If you talk about a baby in his mother's hands, touching him, it's been scientifically proved that this influences his development.
However good our conditions are here, we're still like a “gilded cage.” The kids are still humiliated—some because they always lived in a “collective” place. Everything is always done altogether in line, never in private, to sit at a table to eat. It's always this public, “grown-up” behavior, and in our point of view, it affects the child's mind. It affects the development of their nervous system.
Also in small “collectives,” it becomes a struggle to survive. They become aggressive. It's natural, if someone has to struggle to survive.
They have no attachment. They have nothing of their own—not his toy, or her toy. They don't even have personal clothes. There is no face that a child wants to see all the time. Or even, he constantly has to see a face he doesn't want to!
Of course, we recognize these problems, but it is physically difficult to meet their individual needs. We try to give them individual attention. Some staff take the children home for a few days, so they will see what a home is like.135
But while Dr. Vassilieva believes that this brief exposure to family life benefits children by providing them "some kind of 'fresh air,'" it also causespsychological complications. "Because there's a lot of stress for the child. They see 'home' children and can't answer why they don't have a home, themselves."136
The problem for the majority of children is that they will rarely even visit a private home, and this, Dr. Vassilieva believes, impedes these children in their adult life:
The opportunity for the orphans is much lower. It's very heavy for them. We're now raising the kids of the kids we had before. The grown-up kids don't have the impulse to establish a family. They have a couple of marriages, and then leave their children.137
Orphans denied personal possessions
The "collective" philosophy criticized by Dr. Vassilieva is a pillar of Russian institutions, and it contravenes the basic precepts of the Convention on the Rights of the Child protecting the individual development of a child. The following is one volunteer’s graphic account of the concerted policy in her Moscow baby house to deprive children of individual possessions. The experience of Theresa Jacobson has been corroborated by a number of others interviewed by Human Rights Watch.
It was one of the better baby houses, because there were a lot of private aid groups there. But they'd keep a lot of the donations locked up in a storage room downstairs. A lot of stuff we brought, we wouldn't see. “It's not necessary to give out the toys at once,” they would say. “Save some for a rainy day.” Part of this is this due to the Russian mentality, that they never know what will happen. So they keep huge packages of toys in storage...
Also, there was a norm of two toys per child. But it was for a child as part of the group. Not for an individual. Toys were kept in a glass case, and brought out when we came. I brought a cassette player for one little boy who was blind and just lying there, out of it. They came up with excuse after excuse for why they never used it. It disappeared.
The Anglo-American school gave a toy to each child each year, but then found that the toy only went to the “collective.” A child was not allowed to have her own little teddy bear on the bed. The rooms were bare.138
Although there has been a deluge of toys donated to baby houses since international charities began to assist them in the early 1990s, the children's beds in many baby houses are still bare. In addition to eyewitness accounts by numerous people interviewed by Human Rights Watch, we observed this irony first hand during a visit to a well supported baby house in Moscow.
Reminiscent of the peculiar practice in Romanian orphanages to display newly acquired developmental toys in places only accessible to the staff, the staff of the Moscow baby house called our attention to their bright array of Montessori toys stacked in the glass cabinet just inside the play room. They stopped our tour briefly to demonstrate how the toys worked, and then put them back and closed the cabinet door.
More significant was the apparent absence of rapport between the toddlers and the staff who stood stiffly at several arms' lengths from the children. This distance contrasted sharply with the rapport Human Rights Watch observed on a visit to another well appointed baby house outside Moscow, where the staff and children played and embraced easily during and after their lunchtime meal.
Another notable feature of the Moscow baby house we visited which confirmed patterns described by regular visitors to state institutions, was the extraordinary silence and orderly atmosphere for a building full of small children. Even as a group of preschoolers was piling on their snow suits for their afternoon recess, there was barely a sound in the cloakroom, either among the children, or between them and the two women from the staff who were supervising them.
The abuse of sedative drugs
There is a high premium placed on orderliness and quiet and we learned that Russian orphans pay a high price for this. Human Rights Watch heard repeated references to the use of strong tranquilizers such as aminazine in the state institutions, and noted the sharply critical findings of an international team ofinvestigators in 1991, who also stressed the high risk of liver damage to the orphans.139
We were also told by the staff of an internat for disabled orphans that they regularly give the children aminazine when they are agitated and it is time for them to go to sleep.140
One former volunteer who regularly worked for a year and a half in a Moscow baby house described most vividly how her suspicions about routine sedation were reinforced when she returned for a visit after giving birth to her own baby:
They have very clear ideas about children and sleeping. I came in after my baby was born. They asked how much the baby sleeps. And when I answered, “Not much,” they told me, “Oh that's very, very bad, the baby needs sleep. We can give you injections that you can give to put the baby to sleep.” I'm positive this is what they do to get them to sleep, especially the ones that they call “nervous.” The staff was horrified that my child slept so little.141
Discrimination against orphan babies requiring medical care
When orphans in a Russian baby house need medical treatment in a hospital, they face a new hurdle of discrimination. Human Rights Watch learned about routine practices regarding orphans from a volunteer, one of whose tasks it has been to arrange for medical care for children in the baby houses:
The baby house staff put the baby in an ambulance. Sometimes someone will accompany the child, and then drop the child off just inside the hospital door. The child is left completely alone and can languish [in the hospital] for three months. Not even a representative from the baby house will come to see the child. I've been in the hospitals many times, many times, and seen this. They definitely discriminate against the baby house children. They put all the dom rebyonka children into one room, so they're given completely second-class treatment.
How was this treatment “second-class?” You know how it is in a Russian hospital. The family of the patient has to bribe the doctor, bribe the nurse, in order to be sure to get what you want done. The staff know that these are only dom rebyonka children, so no one's relatives are going to give them anything for their treatment. So they put them aside and deal with the others.142
It is crucial to note that some significant variation does exist in the treatment of orphan babies throughout the vast Russian Federation, and the performance standard seems to be set by the director of a given baby house. Human Rights Watch learned of at least two baby houses in Moscow and one in a town in the Volga region where visitors described positive reforms in child care, including the smaller, more intimate children's cottage approach.
But Human Rights Watch also obtained sufficient testimony from Russian and foreign experts to raise serious concerns that discrimination in the health sector against babies and older children in state institutions included being bypassed for corrective surgery—for heart defects, cleft palate—that would improve the child's chances of surviving to adulthood.
Arranging for corrective surgery, like many services in the former Soviet Union, can require a great deal of time for diagnostics, paperwork, and scheduling of the procedure. Financing should not be a problem, as Russian law guarantees the provision of medical care free of charge to children in the custody of the state. But procedures are increasingly costly, since market reforms have driven up the prices on medical services along with everything else. Without parents who can physically make the rounds to the myriad authorities to pressure them for the procedure within their legal rights, the children are at the mercy of the orphanage director and staff to take up their plight. In unusual cases, a charity volunteer can find the extra time to do the extensive work on the child’s behalf. 143 As Dr. Vsevolod Rybchonok explained to Human Rights Watch, "They're just second-class people. That's why those patients are kicked out to the internaty. And these kinds of services, like heart surgery, are very expensive now. "144
One of the most egregious cases recalled by volunteers in the orphanages was that of Alina,145 age five, from one Moscow baby house:
She was a cleft palate case. A simple cleft palate. It had grown so badly because no one treated it when she was little. Her mouth was a nightmare. She couldn't eat, and of course, she was diagnosed as an imbetsil because she couldn't talk.146
The director of the baby house in charge of this case did not acknowledge the case in an interview with Human Rights Watch, or that such a potential problem exists. She described the system in positive terms:
Actually those babies who should be operated on are operated on. But actually the kids who are intellectually very bright but have physical problems, they are very well adopted by foreigners. We've had several babies with no legs who were adopted, treated and made prostheses in Sweden.147
Rationale of budget and staff limitations
The lack of public funds is a constant lament in Russian institutions for orphans across the board, and the staff and directors we interviewed laid the blame for human rights violations in the institutions on the nation's financial crisis.148 Salaries, if paid at all, are so low that only the least-skilled people apply for jobs. Also because salaries are so low, Human Rights Watch learned that two or three staff positions will be filled by one person, who will work three strenuous shifts in a row, rather than the single six-hour shifts regulated for those assigned to the most severely disabled.149
Russian human rights activists and independent child development specialists, however, reject the "financial crisis" claims, insisting that the state provides sufficient funds but the directors allocate too little to the actual care of the children. For instance, in an interview with Human Rights Watch, Dr. Anatoly Severny explained that one government ministry channeled 2,500 rubles ($400) per child per month to one internat he knows, but the daily allocation per child is only 17 rubles (three U.S. dollars) for food and 17 rubles (twenty-five cents) for medicine. 150 Furthermore, he and other advocates claim that since institutions do receive higher subsidies for sicker children, there is an incentive to keep as many children in the institutions as possible, despite the child's potential. Some even claim that the funds are plainly misused, allegations that time did not allow us to corroborate.151
On the other hand, Human Rights Watch learned that the acute poverty in some regions of Russia can inflict real economic deprivation upon orphans. In one rural region where winter food shortages are acute, one baby house director made desperate calls to the local factories to beg for basic milk and bread to feed the children.152
Financial shortages, nevertheless, do not explain the wanton neglect of disabled children left in lying-down rooms. This, according to a wide range of health professionals, orphanage volunteers, human rights advocates and journalists interviewed by Human Rights Watch, goes straight back to the prejudicial stereotype of orphans, and the general attitude of the baby house staff.
Sarah Philps, a volunteer with four years of experience in Russian state institutions, told us:
It's attitude, more than anything else. Attitude, plus no feeling at all of responsibility by anyone who looks after them. I know this sounds extreme, but I've seen it again and again. So we are not talking about money at all. We are talking about no conscience, no soul.
They'll say there's no staff, no staff. But meanwhile, you're very much aware that fifteen women are sitting in the back having lunch, leaving one person there to feed all the children. In another former Soviet republic, by contrast, they shared the feeding shift and everyone takes turns putting a kid on their knee and feeding him. It's also symptomatic of the terribly rigid adherence to their roles. If there's only one vospitatel’, then none of the others will do that work.153
Conclusion
Despite the debates over budgets and attitudes, the evidence collected by Human Rights Watch indicated that life in Russian baby houses further retarded orphans' growth, denying them the basic right to develop their full potential. The first clear impact of this deprivation is documented in the following chapter on the controversial state commission that determines the course of an orphan's future.
116 Human Rights Watch interview, Dr. Olga Vassilieva, March 5, 1998.
117 Human Rights Watch interview, Sarah Philips, February 23, 1998. Based on four years’ experience volunteering in children’s custodial institutions and shared experience with fellow volunteers.
118 Human Rights Watch interview, Dr. Olga Vassilieva, March 5, 1998.
119 Human Rights Watch interview, Sarah Philips, February 23, 1998.
120 Human Rights Watch interview, photographer, February 11, 1998.
121 Human Rights Watch interview, Sarah Philips, February 23, 1998.
122 Human Rights Watch interview, Dr. Elena Petrenko, baby house director, Moscow, March 2, 1998.
123 Human Rights Watch interview, Dr. Vsevolod Rybchonok, March 6, 1998. Dr. Rybchonok has travelled widely for a western-based charity, and has performed general medical examinations on several thousand institutionalized children.
124 Human Rights Watch interview, Dr. Vsevolod Rybchonok, September 23, 1998.
126 "The Children of St. Petersburg" Report by Mrs. Anne Plessz and Mr. Jean-Claude Alt for the Comite International pour la Dignite de l’Enfant (C.I.D.E.) on Children's Rights in Russian Prisons and Orphanages. Council of Europe. "Congress of Local and RegionalAuthorities of Europe." CG/GT Jeunes (1) 5. Strasbourg, Jan 24, 1995. Based on a 1994 June 13-22 visit. Press File. Information document prepared by the Secretariat for the attention of the CLRAE Youth Group.
128 Human Rights Watch interview, Sandy Marinelli, February 25, 1998.
130 Human Rights Watch interviews, Dr. Anatoly Severny, February 12, 1998; director of a Moscow baby house, March 2, 1998; volunteers in Moscow baby houses, February-March 1998.
131 Human Rights Watch interview, Theresa Jacobson, March 8, 1998.
132 Human Rights Watch interview, Dr. Elena Petrenko, March 2, 1998.
133 Human Rights Watch interview, Dr. Vsevolod Rybchonok, March 6, 1998. For some of the early studies done on the detrimental effects of institutions on children, see John Bowlby, Maternal Care and Mental Health (Geneva: World Health Organization, 1951) and Childcare and the Growth of Love (Baltimore: Penguin, 1953); D.A. Frank, et. al, "Infants and Young Children in Orphanages: One View from Pediatrics and Child Psychiatry" in Pediatrics, vol. 97, no.4, 1996, pp. 569-578. W.A. Mason, "Early deprivation in the biological perspective," in Education of the Infant and Young Children, V.H. Denenberg, ed., (New York: Academic Press, 1970); René Spitz, "Hospitalism: An Inquiry into the Genesis of Psychiatric Conditions in Early Childhood," in The Psychoanalytic Study of the Child, Volume 1 (New York: International University Press, 1945) 53-74, and "The Role of Ecological Factors in Emotional Development in Infancy," in Child Development, vol.20, 1949, pp. 145-155.
134 E.W. Ames and L. Savoie, "Behaviour Problems of Romanian Orphanage Children Adopted to Canada," presented at the Thirteenth Biennial Meetings of the International Society for the Study of Behavioural Development ( June 1994); V. Groze and D. Ileana, "A Follow-up Study of Adopted Children from Romania," in Child and Adolescent Social Work Journal, vol. 13, no. 6, 1996, pp. 541-565.; S. Morison et al, "The Development of Children Adopted from Romanian Orphanages, in Merrill-Palmer Quarterly, vol. 41, no.4, 1995, pp. 411-430.
135 Human Rights Watch interview, Dr. Olga Vassilieva, March 5, 1998.
138 Human Rights Watch interview, Theresa Jacobson, March 8, 1998.
139 Human Rights Watch interview, Dr. Anatoly Severny February 12, 1998; Caroline Cox et al., Trajectories of Despair (Leigh-on-Sea: Christian Solidarity International, 1991) , p. 15. Hereafter cited as Cox, Trajectories of Despair.
140 Human Rights Watch interview, Alla Sergeyeva (not her real name), sanitarka, pyschoneurological Internat X, February 15, 1998.
141 Human Rights Watch interview, Theresa Jacobson, Moscow, March 8, 1998.
142 Human Rights Watch interview, Sarah Philips, February 23, 1998.
144 Human Rights Watch interview, Dr. Vsevolod Rybchonok, March 6, 1998.
146 Human Rights Watch interview, Sarah Philips, February 23, 1998. (See Chapter V for full description of Alina’s case.)
147 Human Rights Watch interview, Dr. Elena Petrenko, March 2, 1998.
148 Human Rights Watch interviews, Moscow baby house, March 2, 1998; psychoneurological Internat X February 15, 1998; psychoneurological internat February 16, 1998; volunteers in baby houses, February 13, 23, March 7,8, 1998.
149 Human Rights Watch interview, Natasha Fairweather, February 20, 1998.
150 Human Rights Watch interview, Dr. Anatoly Severny, February 12, 1998; exchange rate as of February 1998.
151 Human Rights Watch interview, human rights advocate, Moscow, February 16, 1998.
152 Human Rights Watch interview, Sandy Marinelli, Moscow, February 25, 1998. Marinelli is a former volunteer whose charity provided assistance to many poor baby houses.
153 Human Rights Watch interview, Sarah Philps, February 23, 1998.