When Russian actress Evelina Blyodans gave birth to a son with Down’s Syndrome, the first question from the doctor at the maternity hospital came as a shock: “Are you going to keep him?”
In Russia, where most children with Down’s Syndrome are still abandoned by their parents at birth, Blyodans, a popular actress and television host, not only kept her son, Semyon, but used her fame to push for greater awareness and tolerance.
The charismatic actress known for sex-bomb roles appeared with Semyon on the cover of Russia’s most popular weekly magazine, 7 Dnei, and set up a Twitter account in her son’s name which now has more than 14,000 followers.
“Some people treat my husband and me as heroes or practically saints. Others vent their anger at us: ‘What’s the point of bringing monsters into the world? Why didn’t she have an abortion if she knew? Why is she showing him off all the time on every television channel?’” Blyodans told AFP ahead of World Down’s Syndrome Day on March 21.
“Our fellow citizens can be pretty tactless. They can point at children with Down’s, laugh or frown with disgust,” said Blyodans, 43.
A genetic condition caused by an extra chromosome, Down’s Syndrome leads to distinctive features, varying levels of learning disabilities and a number of health complications.
According to Moscow-based charity, Downside Up, almost 2,5000 children are born with the syndrome every year in Russia, and 85 percent of them are abandoned by their parents at birth.
Created in 1996 by Britons living in Moscow, the charity helps children with Down’s Syndrome adapt to living in a society where people with disabilities were for decades considered shameful and hidden away.
“You never used to see disabled people on the street. It felt as if they did not exist,” said Blyodans.
“It was then that doctors had it so firmly dinned into them that such children should be taken to a children’s home straight from the maternity hospital, so that no one sees them.”
“Even if some people decided to keep their children, they just sat in their flats like in prison. They were hidden away and their parents were afraid to let them out to play.”
With her striking looks and frank manner, Blyodans gained popularity for playing sultry seductresses in comedy sketches which makes her an unlikely but effective campaigner.
Yelena Artemyeva, a 45-year-old librarian, also has painful memories of doctors’ reaction to the birth of her daughter, Sonya, now two.
“The woman doctor came when I had already given birth: she said ‘Why would you want a child with Down’s Syndrome? Give it away quickly! They’re so awful!’”
Yet Artemyeva acknowledged that she understands such ignorance and fear, because she once felt the same.
“When I was a child, my mother once showed me a girl with Down’s Syndrome and explained that it was awful, a nightmare, that they can’t do anything when they grow up, all they can do is glue up cardboard boxes. For me, Down’s Syndrome was just a horror.”
Experts said such prejudices are still the norm.
“People think that those with Down’s Syndrome cannot be educated, that they cannot live in society and cannot work,” said Anna Portugalova, of Downside Up.
The children who are abandoned at birth are sent to boarding houses for those with mental disabilities, where they receive little attention and have no hope of integrating into society.
It is rare for Russian families to adopt children with Down’s Syndrome, and a law banning US families from adopting from Russia, passed in December, has further reduced their chances of finding a new home.
But even children who are cherished by their families find it difficult to lead a normal life in Russia.
“When it comes to the likelihood of finding work, the situation is particularly bad,” Portugalova said.
“In Western countries, people with Down’s Syndrome can work in cafes, hotels or shops. In Russia, unfortunately, this is not the case.”
In Moscow, where children with Down’s are allowed to attend mainstream state kindergartens, the situation is better than in other Russian cities where parents have to make huge efforts to integrate their children into society.
Calling her 11-month-old son a “gift from above,” Blyodans said she is on a mission to improve the lives of the thousands of people with Down’s Syndrome in Russia.
Her campaign against intolerance is already bearing fruit, she said.
“A lot of the mums who write to Semyon on Twitter said that it was only after we admitted we had such a child that for the first time they went to the sandpit with their child in daylight, not at night as they had before.”