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Research page Trajectories of Despair: Misdiagnosis and Maltreatment of Soviet Orphans
Note: This book was published in 1991 by a human rights organization known as CSI (Christian Solidarity International). Authors: C. Cox.(and others) and gives perspective regarding the ubiquitous "oligophrenia" diagnosis.
In August, 1990, a letter from Leningrad reached Poland's Solidarity Human Rights Commission in Warsaw with an urgent plea for help. It alleged that orphans were being wrongly diagnosed as mentally handicapped and subjected to abuse. A small team of clinicians visited a number of orphanages in Leningrad to find that many of the children did not appear to be intellectually disadvantaged. In fact, they were told that the labeling process is often perfunctory; it may occur very early in life and takes only a few minutes; it is rarely reviewed. When the human rights team asked why, they were told: "The Soviet Union needs unthinking, unskilled manual workers."
In psychiatric hospitals, the adolescent wing was a deplorable setting. For example, a 14 y.o. underwent outdated pharmacotherapy (injections of magnesium sulphate, for example) and had been placed in the psychiatric unit because he had threatened to run away from his alcoholic parents. Case notes from the psychiatrist stated "nothing abnormal was detected" but the teenager carried a diagnosis of "schizophrenia" on his record. A follow-up visit was made in March 1991 to the some orphanages of Latvia and Moscow. In September, 1991, a team consisting of a pediatrician, an educational psychologist, clinical psychologist, a nurse, Soviet expert & TV cameraperson went back to the orphanages of St. Petersburg (formerly Leningrad) and Moscow. Utilizing culture-free, non-linguistic tests with 171 children in 15 different institutions in St. Pete and Moscow, they found that of the children tested between one-third and two thirds were of average or even above-average intellectual ability. The findings have implications: all these children had been labelled "mentally handicapped" and diagnosed "oligophrenic". Virtually all would be doomed to institutional care in special orphanages for the "mentally handicapped" where maximum education would be 4th grade instead of 8th grade for normal children. Subsequently, they would be directed to work in the most unskilled manual jobs and required to reside in special single-sex hostels, without the opportunity to develop normal family life. As "oligophrenics", they will be denied basic rights, such as the right to vote or to drive a car. The specter of psychiatric treatment looms over them as a threat if they run away or misbehave. The use of psychiatry as means of social control has been evident since at least Kruschev's era.
P. 5: " The physical conditions in many orphanages are not bad; in some places they are remarkably good. Many of the staff are impressively caring and concerned. But the ideology is so ingrained that they will often talk in front of the children, speaking about their limitations as "oligophrenics" and "programming in" a self-image of mental illness."
Other staff realized in frustration that their charges were not handicapped: one director stated, " I knew he and he and he were normal-but now it's too late to save them." Thus, even when the system is benign, the children are doomed to stunted lives. The full impact of the diagnosis may not be apparent until they leave the orphanage and enter the adult world. Then, limited job opportunities, poverty and lack of basic human rights take a cumulative toll. The cameraperson who visited a factory for "oligophrenic orphans" found Dickensian conditions of sweated labor. Visiting a hostel for these young people who had "graduated" from the orphanages, he found a slum. He visited a place dignified with a name of ultimate Orwellian proportions called "House of Peace"---the last refuge for those who have run away from orphanages and psychiatric hospitals. Here, children from the age of seven live a "Lord of the Flies" existence in appalling conditions. Some recalled unhappy orphanages where they were subjected to various abuses (including sexual).
CSI (Christian Solidarity International-the Human Rights organization based in Zurich who wrote the book) stated that they have no desire to be "arrogantly judgmental" (p. 6). However, there were serious issues of infringements of human rights for these young people. "We also believe that much can be done to assist professional staff working in the system who have been trying very hard to do the best they can for the children in their care, despite the ideological and physical constraints. They have been isolated from contact with developments in other countries and are eager to learn about alternative forms of care, such as adoption, fostering, and family-size homes. CSI is therefore keen to develop exchanges of info and professional personnel..." It is their hope that those who are currently doomed to trajectories of despair may be given an opportunity to develop their potential for normal, fulfilling lives. "Otherwise, the future is bleak for the 19,000 orphans in St. Petersburg and countless others elsewhere."
Soviet Family Life and Orphans:
Nowadays in Russia, family life is beset by difficulties. Flats are small and cramped. Many young couples live with their parents. Divorce and remarriage rates are high. Families with more than one child are relatively rare. The abortion rate is very high and several times the birth rate. In 1988, 86% of all women between the ages of 15 and 49 had had an abortion. There were approximately six million abortions in the Soviet Union that year. A U.N. report stated that the rate had risen to 12 million by 1991. Low wages and the scarcity of food and other essentials add to the difficulties.
These conditions combine to create intolerable situations where parents find themselves unable to maintain their children. In one typical orphanage for "oligophrenics" in St. Petersburg, 60 of 200 children were actual orphans; the remainder had at least one living parent. In other republics and rural areas, birth rates are higher and abandoned children are almost unknown because of the still-surviving traditional system of family support.
Alcoholism exacerbates the difficulties of many families. It was estimated that the average individual intake of pure alcohol per year was 12 liters per year in 1983 (equivalent to 30 liters of vodka for every citizen of the Soviet Union, young and old). In 1980, of a total population of the Soviet Union of some 260 million, there were 40 million registered alcoholics with perhaps more who had not been registered.
Social Policy and the Care of Orphans:
"The combination of social problems which beset family life, together with the generally negative attitudes towards people with handicap of any kind, has resulted in a situation where there has been little encouragement of policies for fostering or adopting orphan children. In addition, the strongly-ingrained idea that the state was there to care for all
eventualities and untoward situations did not allow individuals to play their part. Adoption by its very nature is an individual acceptance of responsibility for the future welfare of a child. Such an act ran counter to communist ideology and practice which destroyed the concept of charity and the existence of charitable voluntary organizations" (p. 9).
"A number of 'oligophrenic' orphans have been adopted by local people (and by people from abroad-amid allegations that money has changed hands to bypass certain regulations). But those wishing to adopt can still meet formidable bureaucratic obstacles, although the situation varies from one place to another" (p. 9).
The lack of adequate role modeling for warm, caring family life and, in many cases, the prolonged institutionalized brutalization from staff or peer groups, may cause serious problems regarding interpersonal relationships, parenting, and citizenship. This may lead to the repeated cycle of deprivation, abuse and handicap. This is a serious consequence, not only for individual children and their immediate circle, but for society at large (p. 10).
The CSI Investigation:
A total of 171 children were assessed, most of them with one test but some with two. Ages ranged from 18 months to 18 years. The majority were in the 8-13 age range. Random samples were not attempted. Those children who were clearly Down's Syndrome, microcephalic, or who had dysmorphic features suggestive of neuropsychiatric syndromes which might be associated with mental retardation were eliminated. Often, the psychologists tested an entire class, in groups, or individually.
Tests used by the clinical psychologist included the Block Design and Mazes subtests from the Wechsler Intelligence Scale for Children (Revised). The block design test, which was administered individually, requires the child to look at a pattern on paper and copy the design with blocks. The drawings are graded in order of difficulty. The mazes require the child to draw the way out of increasingly difficult mazes. 82 children in 10 institutions were tested.
Tests used by the educational psychologist included the Matrices and Basic Number Skills tests from the British Ability Scales; the Visual Recognition tests (for pre-schoolers), and the Raven's Colored Progressive Matrices. 97 children in 15 institutions were tested. Of the 97, 13 were also tested by the clinical psychologist.
Findings: On a group-administered screening test, one third of the children in St. Petersburg were misclassifed: 18 of the 50 children (36%) assessed scored within normal limits, yet all had been diagnosed as "oligophrenic" with varying degrees of severity. Of nine toddlers in the St. Petersburg group who were diagnosed as "oligophrenic" (aged 18 months to 3.5 years), 2 were found to have average ability, 6 were mildly delayed in their development (but no more than 6 months) and 1 was severely handicapped.
Moscow: "In three institutions visited in Moscow, the diagnosis of severe learning disability appeared to be generally justified. However, in one of these orphanages, of 12 children selected for individual study, 5 scored within normal limits on the ability test. It was particularly surprising that among ten children tested in a home for severely handicapped children (in Soviet terms 'imbeciles' and 'idiots'), we found one child of normal ability."
Of the 82 children assessed by the clinical psychologist (age range 18 m-16 yr) in ten institutions in St. Petersburg and Moscow, 53 scored within the normal range on non-verbal developmental and IQ testing, i.e., 66% of those seen. "It can be said with confidence that very substantial numbers of orphans are misclassified as oligophrenic." (p. 38-Appendix A)
The "Oligophrenia" diagnosis: In Soviet psychiatric practice, the term "oligophrenia" (Greek: small brain) is widely used although it is hardly ever used by psychiatrists in the West. The Oxford English Dictionary defines it as "feeble mindedness". In the 1989 6th edition of R.J. Campbell's Psychiatric Dictionary, it is referred to as an alternative term for mental retardation and defined as "Subnormal general intellectual functioning that originates during the developmental period (before 18 years of age) and which is associated wi impaired learning and social adjustment or maturation." Like the term "schizophrenia", which was widely abused during the Brezhnev era in the treatment of dissidents, the Soviet definition of "oligophrenia" is very broad and includes highly subjective criteria in its application. (p. 17).
Encephalopathy: a "disease of the brain" is diagnosed in babies immediately after birth to an extent which seems alarming to Westerners. This diagnosis is made apparently on a range of criteria, including maternal toxemia, alcoholism during pregnancy, age of mother if over 30, social problems, or "tremors of the chin and fingers of the infant" (p. 18). If Apgar score is less than 7, an encephalopathy diagnosis may be made. If the mother smoked, had gynecological problems, or if the baby's reflexes were diminished will all contribute to the label of encephalopathy. Birth asphyxia, convulsions, Rh problems, bruising, and brain damage also contribute to the diagnosis of encephalopathy. One source told the CSI researchers that 95% of those labelled "encephalopathic" are subsequently diagnosed as "oligophrenic" (p. 19).
Keep in mind this book was written in 1991. Some positive changes have happened since then but sometimes change happens slower than is optimum.
CSI also reported on the abuses of Soviet Psychiatry toward children and adolescents which is also very interesting. If you would like to get a xeroxed copy of this book, contact pnpic@aol.com. It is no longer in print but an adoptive parent in northern VA contacted CSI overseas and they gave their wholehearted permission to have it reproduced. The Parent Network for the Post-Institutionalized Child will charge you for the copy costs and shipping. This book makes the extremely important point that there is a case to be made to lobby for more humanitarian aid to the orphanages. Adoptive parents need to lead the way.