"System Error": Children with Down Syndrome in Soviet Society

March 21 is World Down Syndrome Day. Anna Margolis writes about the status of such people in the USSR.

In 1978, the creative association "Progress" produced an 18-minute documentary titled "Genetics and Us: The Test of the 21st Chromosome" about the birth of a child with Down syndrome. This was truly a step forward: very few people in the USSR, apart from specialists, had even heard of the syndrome, and even fewer had seen children with it in person. The film features lyrical music, soft artistic cinematography, and a serious geneticist trying to help his patient. The patient herself appears in the film — a young, timid mother with a nervous, submissive voice and a fragile silhouette (her face is not shown). There are interviews with leading Soviet and even foreign geneticists who had gathered for an international congress. The viewer sees close-up footage of chromosomes, with a detailed and clear explanation of how the extra 21st chromosome forms.

However, there is one thing missing from this scientific-popular film — the child. Throughout the entire film, we learn nothing about him or his fate. A boy with characteristic Down syndrome features appears briefly at the ninth minute and again later, but his total screen time does not exceed 12 seconds, making it impossible to learn anything about him.

What are the typical symptoms of children born with Down syndrome? What can medicine and education achieve for them in the long run? What challenges will parents face? What are the capabilities of children with Down syndrome—can they walk, talk, play, and understand speech? None of this information was provided to the audience in 1978.

The entire dramatic arc of the film rests on a single question: Can this young woman now give birth to a "normal" child? (The test results confirm she can — happy ending! The couple walks down a corridor toward the light.) Did she abandon her firstborn? We don’t know, just as we don’t have exact statistics on the number of parents who refused to keep children with Down syndrome in the USSR. However, specialists estimate that the number was between 90-95%. These infants were immediately placed under state care. Many did not survive their first year, and most, according to some reports, barely lived to the age of 10.

Thus, a child with Down syndrome (like nearly any child with a serious mental or physical disability) was almost immediately isolated from "normal" children and their parents, made invisible to society, and, as a result, deprived of rights and protection. Conditions in state institutions varied, but the model itself—placement in a government-run institutional home, often outside the city — did not just marginalize these children but made them an entirely invisible "unknown population." Most people saw this system as a normal and logical way to handle disability.

It is important to understand that the system's representatives, who actively encouraged parents to abandon their children, were not always acting out of malice. In fact, in nearly all cases, doctors in maternity hospitals strongly urged mothers to give up their "abnormal" babies, arguing that their condition was hopeless and without any prospects of “improvement.” This insistence stemmed from a mix of misguided care for the mother ("You don’t understand — he’s a vegetable, but you’re young and will have a normal child!") and sheer ignorance about child development in Down syndrome cases. A medical textbook might have contained just one or two paragraphs on the condition, accompanied by vague black-and-white photos and outdated terms like "Mongolism" or "Mongoloid idiocy." (This terminology had been criticized as unacceptable and reactionary as early as the 1930s, yet it continued to be used until the 1980s.)

Psychological and pedagogical studies from the West in the late 1960s and early 1970s highlighted the crucial role of family and educational environments in fostering development, but these ideas did not make it past the Iron Curtain. Ignorance led to fear and silence, which in turn led to an unwillingness to integrate children with disabilities, pushing them out of sight.

Moreover, the familiar concept prevailed: the image of the state as a caretaker capable of handling everything more effectively. This model was widely embraced at the beginning of Soviet rule with its factories, nurseries, schools, orphanages, and communes. Collective upbringing was seen as superior to the traditional family approach: who could educate and re-educate better than any parent, if not a collective under state control? As researcher Sarah Phillips notes, refusing to place a disabled child in state care was often seen as irresponsible, with parents facing pressure not only from doctors but also from their social circles. Outside of state institutions, access to adequate medical care was almost nonexistent. As a result, there was enormous pressure to institutionalize children with Down syndrome.

Nevertheless, 5-10% of children with Down syndrome remained with their families despite the pressure. Unfortunately, even in this seemingly better scenario, stigma was unavoidable. The few parents (often single mothers) who chose to keep their children faced severe social isolation. With minimal resources, they received neither state support nor societal understanding. Some parents have recounted avoiding going outside with their child, choosing instead to take walks at night to avoid judgmental stares and tactless remarks. They had to rely on intuition when raising and educating their child — there were almost no guidelines or methodologies, and without support, they lacked both the strength and means to help their children develop. This created a vicious cycle: parents hid their children, preventing their socialization, which in turn hindered their development and increased their isolation. Attending regular schools or kindergartens was out of the questioт — even experienced teachers and doctors had never interacted with children with Down syndrome and had no idea how to approach them. This cycle of silence and invisibility only began to slowly break (and still inadequately, unevenly) after the fall of the USSR.

It would be incorrect to say that children with disabilities (a term officially introduced only in 1979, when the UN declared it the Year of the Child) were completely neglected. The USSR did have specialists — doctors, defectologists, psychiatrists, speech therapists, and educators — who worked with children with various conditions, driven by scientific curiosity or humanitarian ideals. However, their work usually took place in closed medical institutions, which only a select few had access to. The dedication of individual specialists could not change the overall system. Additionally, since experts primarily observed children with Down syndrome in these institutions, they often failed to distinguish between developmental issues caused by the syndrome itself and those resulting from environmental factors, such as neglect and deprivation.

There were also diagnostic challenges. Scientist Zhores Medvedev recalled that in the early 1960s, even after genetics was rehabilitated as a scientific field, medical institutions in the USSR lacked the expertise to diagnose common chromosomal disorders like Down syndrome due to a shortage of qualified professionals.

Thus, despite rare and relatively favorable cases, invisibility and silence were the norm. These stemmed from both public fears and Soviet ideology, which glorified health and normality, dividing citizens into superior and inferior groups.

Many have heard such stories: a Soviet person travels to the West and is bewildered by the number of disabled people, mentally ill individuals, and people with intellectual and developmental disabilities in public. Why are there so many wheelchairs on the streets and in theaters? The answer is simple: there were no more disabled people in Europe than in the USSR (the global incidence of Down syndrome is approximately 1 in 700-800 births), but in the USSR, those deemed "abnormal" were hidden, isolated, and forgotten so that their mere presence would not tarnish the image of a strong and healthy Soviet society. When asked whether the USSR would participate in the 1980 Paralympics in Britain, a Soviet representative answered, "We have no disabled people in the USSR." (This was not an isolated case—decades earlier, Trofim Lysenko, an opponent of genetics, had declared that "citizens of a socialist country cannot have hereditary diseases.") As Valery Fefelov, a disability rights activist, once described: one worker, who tried to get permission to have his little daughter treated abroad, was told: “We will never allow the West to profit politically from your child's treatment, even if it costs her life.”

Disability in the USSR was framed solely in terms of labor capacity—whether a person was able to work. In this system, people were expected to be useful to the state, and an incapacitated person was seen as a burden to both the government and society. If a war veteran or a worker injured in the workplace was at least once useful, the least useful "burden" were children with disabilities due to congenital mental and psychological impairments. While some children and teenagers (those who were hard of hearing, had poor vision, or were in wheelchairs, for example) received primary and secondary education and learned some trade skills (higher education was an exception and required an exceptionally strong character and extensive family support), education was essentially closed off for children with intellectual disabilities. As researcher Andrew Sutton noted in 1988, children with severe disabilities and diagnoses who would be taught in special programs in the West were labeled “unteachable” in the Soviet Union and completely excluded from the educational system. Sarah Phillips cites his reflections: Sutton writes that the social role of the special education system in the Ministry of Education was not to provide education for everyone, regardless of disability, limitations, or deviations, and adapting the curriculum to the needs of the individual child. Rather, it provided basic education, upbringing, and socialization for those children capable of receiving it, shifting the responsibility for those children who did not fit into the standard special program onto someone else, most often institutions where they were taught only the most basic practical skills, or, less frequently, to the family, which received no state support.

In rare cases, individuals with Down syndrome who survived childhood and stayed with their families managed to get some work. Natalia Groznaya, editor of the "Down Syndrome. XXI Century" journal, writes: “In Soviet times, there were quotas for disabled people at various state enterprises. In the early '90s, I managed to meet and talk to adults with Down syndrome who were working. Of course, their jobs were very simple — for example, stringing hairpins onto a cardboard base. Perhaps relatives helped them, as they worked from home. But they were officially employed and received a salary. When they talked about it, they straightened up. It raised their self-esteem. After perestroika, this opportunity was lost.” However, even in recent years, only a few individuals with Down syndrome in Russia are officially employed (there have been cases in "Theater of Simpletons" and "Coffee Mania").

Another important factor that contributed to the widespread violation of the rights of disabled people was that in the Soviet Union, informal organizations were essentially banned unless they were appointed from above. Various associations of parents of sick or special children, groups of disabled individuals, and their initiatives were, at best, neither encouraged nor approved by the authorities. Yet, it was these organizations that broke down the wall of ignorance and misunderstanding in society and influenced legislation. Activists were typically labeled as dissidents and unreliable: the story of the creation of the Initiative Group for the Protection of the Rights of Disabled People in the Soviet Union in 1978, described by Valery Fefelov, is a vivid example. Sarah Phillips recounts that the authors of a collective letter to Brezhnev about installing ramps in Kyiv were pursued by the KGB, and few of the existing nationwide organizations dealt with issues that did not contradict the system (for example, correspondence and communication among disabled people) and avoided conflicts with the authorities. As for Down syndrome, no one appeared to be addressing these issues at the human rights level. Each parent fought alone, and the life expectancy, even for those raised in families, remained very low.

In post-Soviet Russia, the first association for people with Down syndrome was established in 1993 — Down Syndrome — founded by Sergey Kolosov. Orienting itself to Western experience, it also took into account domestic specifics and broke the first hole in the wall of alienation. In 1997, the Downside Up Foundation was established, which has done an incredible amount to support families of children with Down syndrome across the country, developing early intervention programs. Both organizations have contributed to gradually breaking down Soviet stereotypes and legacies and have opened up opportunities for children with Down syndrome to be a part of society. Now, in Moscow, half of the children born with Down syndrome remain with their families (15% across the country, which is still a huge progress). Now they can receive information and support both from non-profit organizations and the state: inclusive schools, special schools, centers, and various programs exist.

The United Nations Declaration on the Rights of the Child, adopted in 1959, formulated the ten basic principles. If we look at these principles in the context of the rights of disabled children in the Soviet Union, and children with Down syndrome in particular, the picture is predictably bleak.

A child should have all rights recognized without any distinctions or discrimination — discrimination against disabled people was a daily reality, and a child with Down syndrome was deprived of almost all basic rights simply because of being born with an extra chromosome. Protection and conditions for normal development (mental, physical, and social) were, of course, not ensured for a child with Down syndrome in isolation. A child with Down syndrome was deprived from the start of the conditions needed for full development, even for a completely healthy child, let alone those requiring special support. Housing, food, and medical care were provided to some extent — though what existed on paper didn’t always align with reality.

Thanks to memoirs of the recent era, such as White on Black by Ruben Gonzalez-Gallego, Candidate for Disposal by Anton Borisov, and thanks to foundations, volunteers, and the greater transparency of modern life, we learn a little about what happened and is still happening in closed institutions and orphanages, but unfortunately not everything. The fifth principle of the declaration specifically stated that a child who is incomplete physically, mentally, or socially should be provided with the special routine, education, and care necessary due to their condition. However, there was no system in the Soviet Union to ensure an individual approach. The cornerstone principle — upbringing by parents and keeping the child with the mother — was violated in 95% of cases for children with Down syndrome. Even the weak substitute for family relationships — friendships or attachments formed within orphanages and institutions — was easily torn apart by the system, often moving children from one institution to another. The right to education for those deemed “unteachable” was ignored, and, in fact, mentally disabled individuals and children with Down syndrome were not regarded as individuals (and thus not as ones endowed with rights from birth). And despite all the positive changes for children with Down syndrome who stayed in families, the fate of abandoned disabled children today is, in essence, not much different from the Soviet period: the lack of basic, minimal rights to a decent life in orphanages remains one of the most terrifying and closed-off areas of contemporary life in Russia.

To be fair, it should be noted that if we look at the picture of violations of the rights of disabled children and children with Down syndrome outside our country, we see that the situation in the Soviet Union was not entirely unique, but rather, like many other areas, lagged behind by 30-50 years.

For example, in the United States, it was not until 1960 that children born with Down syndrome were no longer placed in special institutions and allowed to stay with their families. The law for compulsory and free education for disabled children was passed in 1975. It wasn’t until the 1970s that an early intervention educational program was developed, which changed the perception of the "unteachability" of children with Down syndrome. Until the 1980s, in some cases, doctors refused to perform life-saving surgeries on children simply because they had Down syndrome. After a high-profile court case, during which an infant died without proper and timely intervention, this practice was banned.

But society changed, the state subsidized new programs, specialists changed the public's views, and children saw children with Down syndrome in schools and on the streets. What had once seemed “strange” and “scary” became normal and everyday. Meanwhile, the closed nature of Soviet and post-Soviet society and the complete opacity of the social security system have allowed for a far greater gap between the rights of children with Down syndrome on paper and the real situation.

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