Removing the Mask of Down Syndrome

Deprived of specialized education and medical treatment, most children with Down syndrome in Russia die before reaching adulthood. A few pioneering organizations and charities are now challenging the long-standing practice of institutionalizing disabled children, and creating nurturing environments at home.


By Natasha Fairweather


Looking at Tanya Chekhovskaya, it is hard to believe there has been any improvement in the lives of children with Down syndrome in Russia. Although she just turned 10, Tanya has the height of an average 5-year-old. Her lips are dry and cracked, her skin, scabby and red. Tanya's closely cropped hair and washed out clothes give no indication that she is a girl. Her swollen, blue hands are caked in old blood like those of a homeless alcoholic. And they are chilly to the touch. Tanya's weak heart works so inefficiently that warm blood barely reaches her extremities.


And yet there is a spark in her eyes, and she smiles.


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 Tanya smiles as the doctor explains that Down syndrome children go through phases of being "evil, sullen and withdrawn," as well as times when they are happy to dust furniture if lavishly praised.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.


But there are no resources to develop a child like Tanya at this or any other of the state-run institutions. Russian educators never emphasized individual needs of children partly because Soviet ideology promoted communal living, not private interests. And disabled, "socially useless" children had no place in the perfect socialist society. Parents were encouraged to hand over such infants to institutions where, hidden from the world, they would be given rudimentary food, clothing and medicine. And be forgotten. As recently as two years ago, it was not unheard of for members of the medical profession to advocate euthanasia for disabled babies.


"I could not say that I am proud of the internat ... but in general I believe that everything that can possibly be done in the current conditions is being done," says Natalya Tsibisova, director of residential institutions of the Committee for the Social Defense of the Population of Moscow. Many children with Down syndrome face a choice of being raised in an impoverished alcoholic household or an institution, she argues, "and for these children, life in an internat is a paradise."


But there are signs of a shift in the single-minded promotion of institutionalization. Increased exposure to scientific evidence of the merits of individualized teaching programs for children with Down syndrome and widespread examples of active lives led by such adults in other countries have tempered Russian attitudes toward people with the disability. Media coverage of the emotional and physical deprivation endured by children in state care has prompted the public to be a little less hostile to handicapped people in general.


Much of the credit for the thaw in attitudes can be laid at the door of several Moscow-based organizations. From distributing literature to lobbying the government, pioneering individuals have worked exhaustively to increase opportunities for people with Down syndrome and to encourage families to take the brave and still rare step of raising such children in their own homes.


Special teaching programs developed in the West have proved that children with Down syndrome, if taught early, can learn to speak, read and write at least at primary school levels and to look after their own basic needs. But in Russian orphanages, these children are sometimes not even taught how to hold a spoon. Tanya's potential, for example, is limited by the walls of the room she shares with nine other children. All she can do, apart from the occasional household chore, is sit on her chair and look up at the brand new toys, still in their wrapping, that this internat has decided to keep beyond the children's reach on top of the closets.


Russians classify mental retardation in three degrees of severity: debility, imbecility and idiotism. Idiots, the most seriously disabled, do not merit teachers or therapists in state care. Only one sanitarka, a woman who cares for patients' basic needs, is on hand to clean and feed the 10 children in Tanya's room, as well as another 10 severely physically disabled teenagers living in the next room. Most institutions are similarly understaffed due to the pitiful levels of pay. The state's monthly salary in these institutions for a basic nurse is 200 rubles ($33) and for a teacher 400 rubles. At Tanya's internat, the staff sometimes resorts to giving the children sedatives at lunch time to ensure afternoon naps. And the children will not even go outside to the small playground dwarfed by high-rise apartment blocks until the spring.


If they make it to the spring, that is. As in the rest of the world, approximately one in 800 babies in Russia is born with Down syndrome, a congenital disorder caused by the presence of an extra 21st chromosome. People with Down syndrome have varying degrees of mental retardation, and up to 40 percent suffer from heart and respiratory problems as well. What sets Russia apart is the mortality rate. In the West, the life expectancy of people with Down syndrome lies somewhere between 50 and 60 years, but in Russian institutions few children even make it to adolescence. Downside Up, a British-registered charity working in Moscow, estimates that 50 percent of children with Down syndrome in Russia die within a year of birth.


According to statistics issued by the Russian Down Syndrome Association and confirmed by Moscow doctors, 90 to 100 children with Down syndrome are born in the capital every year. About 95 percent of them are placed in state-run baby homes at infancy, and those who make it to the age of 5 are then moved to internats for the duration of their childhood. There are only an estimated 120 children with Down syndrome between the ages of 5 and 18 currently living in Moscow's six internats for the disabled, however, suggesting that 90 percent have died before reaching adulthood.


Dr. Gennady Gouzeev, the chief geneticist at Moscow's Filatov Children's Hospital, concedes that children with Down syndrome require "a special care plan" in order to survive and that Russian institutions do not offer that. "It is always better for these children to be raised at home," he says, where they will be loved and better cared for. But Gouzeev argues that few Russian families today can afford to raise even a healthy child at home, let alone a sick one. Still, if parents are willing to avoid "egotistical behavior," Gouzeev puts them in touch with people like Sergei Koloskov.


Sergei Koloskov was a professional pianist in his early 30s when he discovered in 1989 that his newborn daughter, Vera, had Down syndrome. Like most parents in his position, he was numbed by the news. "I felt as though I had been burned," he says. "I knew at once that this was a defining moment in my life, that subsequently time would always be divided into before and after Vera's birth."


The pediatricians advised Koloskov and his wife, Marina, to give the child up, using the usual combination of misinformation, horror stories and bullying tactics. "They told us that Vera was without any intellect, that she didn't need a family because she would always be completely indifferent to who fed and looked after her. ... They warned us that Vera would drool constantly and frighten away our friends," he says. But they could not bear to part with their daughter and took the tiny, sickly and vulnerable baby home to their large, dilapidated communal apartment in the center of Moscow.


Koloskov found therapists at the evolving Institute for Curative Pedagogy who were able to work with Vera, but they were not specialists in the condition. When he heard that a Down syndrome conference was being held in Lyon, France, in 1990, he and the family traveled across Europe by train to participate. There, the Koloskovs learned for the first time that children with Down syndrome could learn to speak, study and work if early intervention teaching methods were practiced. At the urging of the other delegates at the conference, Koloskov, who had no medical training, decided to set up a Down Syndrome Association in Russia, which he runs to this day from his apartment. The DSA now has five regional branches in Russia, as well as 10 more at the planning stage, and an estimated 1,000 members. They employ some 100 therapists, doctors and care-providers and are funded mostly by European charities and grants.


The association's first project involved translating literature and videos from an Australian teaching program called Small Steps and distributing it to Russian parents of children with Down syndrome. Without trained teachers, however, this scheme produced only limited success. Recently the association was able to persuade the Education Ministry to officially recommend Small Steps for Down syndrome therapy, which means the program may receive the necessary personnel support for proper implementation. The association has also been allowed to distribute literature explaining the syndrome to hospitals, especially maternity clinics, and social welfare departments all over the country.


The association is also radically changing the lives of 100 children, some of whom have Down syndrome, who live at Moscow's Internat 30. With Western charitable funding, DSA has increased staffing and equipment and improved teaching programs in this home, which has been transformed into a more pleasant environment with newly painted walls and toys.


As Koloskov speaks about his new life's work -- he has had to put aside his musical career -- Vera bounces into the room. At 9 years old she has embarked on something revolutionary in Russia; she attends a regular school run by a visionary teacher who agreed to take in two children with Down syndrome. Vera exudes confidence and has inherited her father's flamboyant style. She enunciates her words well, and is learning to read and play the recorder. She seems to enjoy the media attention -- the strangers in her house with cameras and notebooks -- to which her father's work has exposed her.


Natalya Zaitsova might not have had the courage to bring her daughter Fiona home four years ago had it not been for the Down Syndrome Association. As a vulnerable single mother, Zaitsova was humiliated and intimidated by the medical staff of the maternity clinic where she gave birth at age 40. "Just look what you've produced," the midwife said to the sensitive, bohemian poet immediately after delivery. "Is it a girl?" Zaitsova asked. "No, it's a Down," she was told.


Informed that Fiona had no more than two days to live, Zaitsova christened her with as exotic a name as she could imagine so that she would not have to hear it uttered daily on the streets of Moscow. Under particularly intense pressure as a single mother, she signed an agreement to hand Fiona over to state care.


But Fiona lived. She survived despite being scantily fed, both in the hospital to which they first took her, and then the baby house where she ended up. Zaitsova, meanwhile, read all that she could about the development potential of children with Down syndrome and decided to bring her baby home. Fiona learned to walk and began to speak in the months leading up to her second birthday. And now at age 5, Fiona attends an integrated kindergarten that teaches children both with and without disabilities.


Nash Dom, or Our Home, is a part state-funded, part charity-funded school run by a dozen young Russian special-needs teachers whose attitude to children with disabilities is antithetical to the old Soviet approach. "Earlier, our whole society was imprisoned by its prejudices. The state took so much trouble to remove and segregate children with any kind of problem," says Marina Semyonovich, the soft-spoken head teacher.


Nash Dom takes up to 50 children a year, 10 of whom have Down syndrome. The kindergarten prides itself not only in educating children with various disabilities, but also in crushing ignorance and prejudice among the rest of the children at the school and their parents.


Nash Dom's endeavor remains unique in Russia, but Semyonovich has discovered that children with Down syndrome are beginning to be integrated on an individual basis into normal schools, although still in tiny numbers: "I can think of 10 examples in Moscow," she says.


Nash Dom's activities are funded in part by Downside Up, which was established in Russia two years ago to provide educational and therapeutic support to children with Down syndrome who are raised in their own homes. Run by an efficient, international staff, Downside Up is currently developing a Russian version of Makaton, a sign language for pre-verbal children. It has also translated and disseminated educational literature and videos and arranged for British specialists in the field to address groups of Russian pediatricians, geneticists and doctors whose perceptions of the potential of people with Down syndrome pose a major hurdle.


Lena Nikitsova knows all about trying to surmount these hurdles. In the face of considerable opposition from her friends, her family and her priest, in 1989 she adopted Lenochka, a 29-year-old woman with Down syndrome. Since then, Nikitsova, a psychologist with two university degrees, has struggled continuously in the face of official hostility and ridicule to get Lenochka the therapeutic, medical and even basic dental treatment she needs. "Lenochka's mother loved her, but she was old, isolated and had been told that nothing could be done with her child. ... She raised Lenochka like an animal, believing that she could not distinguish between potatoes and porridge," Nikitsova says.


Nikitsova's motivations in becoming Lenochka's guardian were primarily religious. Her two biological children, severely disabled from birth, both died at a young age. Nikitsova felt a religious calling and was contemplating joining a monastery when Lenochka's mother, a family friend, died. Nikitsova decided to channel her energies into taking care of Lenochka, who had no other guardian. Nikitsova first Christened the Jewish-born Lenochka. Then she taught her to dress and wash herself, speak and worship and even took her on a spiritual retreat to a monastery in France.


The experience of working with Lenochka drew Nikitsova into an experimental project in which actors with Down syndrome join drama students in performances. The troupe stunned commuters on a Moscow bus one day by arguing heatedly about the motivations of Chekhov's characters.


"What has happened to Lenochka in the last years has been nothing short of a miracle," says Nikitsova.


Lenochka's smooth face, long hair and perpetual smile belie her now 38 years of age. Shy at first, she suddenly leaps to her feet when asked about her acting, breaking into Charlotte's monologue from Chekhov's "Cherry Orchard."


"People with Down syndrome have the gift of a living soul concealed under the mask of illness," Nikitsova interjects when Lenochka pauses for breath. "These people are yurodivye, divine idiots. ... And they are our conscience. If society does not look after them, then society will never be healthy."


Down Syndrome Association. Tel. 925-6476


Downside Up. Tel. 256-4525


Natasha Fairweather is a voluntary adviser to Downside Up on media relations.