Down Syndrome Kids Are Still Made to Feel 'Undesirable' in Russia

Russian actress Evelina Bledans plays with her son, Semoyn, a child with Down syndrome, in their country house outside Moscow, on February 8, 2013. Evelina ignored medical advice to give up her Down syndrome child to the state and regularly posts on social media about raising him. KIRILL KUDRYAVTSEV/AFP/GETTY

"I don't want to look at children in wheelchairs!" shouted one distraught woman at a tense public meeting in eastern Siberia late last year. "I can't do anything to help them, and I can't look at them and cry every night over this, you understand? I don't want to do this, and I have the right not to!"

The local meeting was aired by Russian state-controlled TV after disability campaigners in the city of Krasnoyarsk sparked uproar when they applied for permission to install a wheelchair ramp at the entrance to a residential building due to house an inclusive child-development center. Under Russian law, tenants must give permission before any work can be carried out on the exterior of a residential building.

"Where are they going to play? Here?" sneered one elderly local woman, gesturing furiously at a nearby playground. Another woman at the meeting insisted that "sick" and "healthy" children should not mix, while another said she was concerned that the disabled children could be "infectious." Others objected to the wheelchair ramp on more prosaic grounds: They were concerned it would interfere with their parking.

Permission for the wheelchair ramp was eventually granted after a concerted campaign involving disability campaigners, city administration officials and even a famous pop singer. But the dispute highlights the challenges facing disabled people in Russia, which has a long history of institutional repression and discrimination against the physically and mentally disabled.

Unlike in Western Europe and the United States, where disabled people are a highly visible part of society, Russian's 12.5 million citizens with disabilities are a relatively rare sight in public, especially in provincial regions with less developed infrastructure. Nearly 30 percent of Russian children with disabilities such as cerebral palsy, muscular dystrophy and Down syndrome live in state-run orphanages, although most of them have at least one living parent.

"Russia is just beginning on the path towards the integration of people with physical and developmental disabilities into mainstream society," says Elena Alshanskaya, head of the Volunteers to Help Orphans organization, which seeks to improve the lives of both disabled and able-bodied children abandoned by their parents. "But people are afraid of what they don't know, of what they don't see every day."

Many of those abandoned have Down syndrome. While there are no official statistics, experts estimate up to four out of every five babies with the chromosomal disorder are abandoned by their parents shortly after birth. In Moscow, the figure is one in two.

Valeriya Bulgakova knows she was lucky. "The doctors at the maternity hospital didn't even try to talk us into giving him up when they realized that he had Down syndrome," she says, gesturing at her 5-year-old son, Vasya, who is busy tucking into a slice of his favorite fruit pie at the family's apartment in Balashikha, a small town near Moscow. "The midwife said straight off, 'Look how nice he is!'"

Yulia Kolesnichenko, a spokeswoman for Moscow's Downside Up charity, which provides support and advice for families raising children with Down syndrome, says there is little official guidance for medical staff on how to deal with parents who have given birth to Down syndrome children. "Staff at maternity hospitals often say things like 'What have you given birth to?' or 'Give the child up. Have another baby—forget about this one.'"

For those children with Down syndrome who reside in often violent state orphanages, life is bleak. In Russia, all forms of developmental disability are considered a psychiatric illness, so when these children turn 18, they are frequently sent to state-run "psychoneurological" institutions. These residential care homes often house patients with serious psychiatric problems, such as schizophrenia. For those who are fortunate enough to avoid being institutionalized, employment opportunities are almost nonexistent. Strict labor laws prohibit "invalids" from doing the vast majority of jobs, and consequently only two people with Down syndrome are officially employed in Russia.

Outside central Moscow's liberal strongholds, attitudes toward the disabled, especially those with developmental disabilities, all too often remain a mixture of suspicion and hostility. In April, a regional lawmaker with the ruling United Russia party proposed removing children with autism or other learning difficulties from classrooms because, he said, they spend much of their time "meowing under the table."

"In any authoritarian state, there is no tolerance for anything or anyone that differs from the norm," says Anna Varga, an associate professor at the National Research University's Higher School of Economics, in Moscow. "Russian society is in a state of stress, fear and depression. As a result, most people have no capacity for tolerance or compassion toward anyone."

Shortly before the dispute over the wheelchair ramp in Krasnoyarsk, Oksana Vodianova, a 27-year-old woman with cerebral palsy, was thrown out of a café in Nizhny Novgorod, a city in central Russia. The furious owner said she had been "scaring all the customers away." He also told her carer to "go and get medical help for you and your child. And then go out in public."

Similar scenes are common in Russia, disability campaigners tell Newsweek. The majority, however, go unreported. The incident in Nizhny Novgorod would have likely gone unnoticed were it not for the fact that Oksana's elder sister is Natalia Vodianova, a supermodel who has appeared on the cover of Vogue. She also runs the Naked Heart Foundation, which is aimed at helping underprivileged and disabled children in Russia. "What happened to my sister not an isolated case," Vodianova wrote in a Facebook post that quickly went viral. "It's difficult for me to talk about this, but I understand that this is an alarm bell for society that must be heard."

After the row made international news, investigators brought charges against the owner of the café. But plenty of Russians sided with him. Eduard Limonov, a former opposition leader who now writes a column for the pro-Kremlin newspaper Izvestia , urged his Twitter followers to "admit" it was "unpleasant" to look at disabled people and said they should be barred from cafés and restaurants.

Such attitudes have their origins in the Soviet era, when people with physical and developmental disabilities were often hidden away. After World War II, soldiers who suffered crippling injuries while fighting Nazi Germany were forcibly taken from large cities such as Moscow and St. Petersburg and sent to labor camps in Central Asia or remote areas of northern Russia. Ahead of the 1980 Moscow Olympics, "undesirables" of all types, including disabled people, were taken beyond the city's borders, so as to not tarnish the Kremlin-promoted image of a "perfect" Soviet society for foreign visitors.

It would be disingenuous, however, to say that modern Russia has made no progress on rights for the disabled. The existence of multiple disability-pressure groups, unthinkable under Soviet rule, is a testament to this. Recent legislation, including prohibitions on disability-based discrimination, has sought to improve the lives of Russia's disabled, while massive government investment has made Moscow's transport system far more accessible for wheelchair users. The past 15 years have also seen a steady increase in the number of children with developmental disabilities, including Down syndrome, who attend kindergarten and high school, something that was unimaginable in Russia in the 1990s.

"We are taking baby steps toward an improvement in attitudes," says Downside Up's Kolesnichenko. "Right now, Russia lags behind Western countries by around 40 to 50 years. But anything that we or the families can do to change attitudes fades besides what the children can do themselves by simply appearing in public, on playgrounds, in the streets, in schools and nurseries."

Celebrities have begun to lead by example. When Evelina Bledans, a popular actress and TV presenter, gave birth to a son, Semyon Syomin, with Down syndrome in 2012, she ignored medical advice to give up her child to the state. She now posts regular updates about his progress on a dedicated Instagram account. "Some people considered us almost saints, while others said we are idiots and asked why we were 'showing these freaks to the whole country,'" Bledans told Russian media this year.

Back in Balashikha, Vasya Bulgakov finishes off his fruit pie and heads into the family living room to show off his dance moves. "Attitudes are slowly changing in Russia, there's no doubt about that," says his father, Denis, as the sounds of pop music fill the apartment. "Of course, we hope that by the time Vasya is an adult, the situation here for people with disabilities will be like it is in the West. But why make big plans, especially in a country where everything is so unstable? We are happy, we love our son, and we realize that everything is up to us."