For Russian Kids, A Disablity Often Means Life In An Orphanage
Dasha Daunis is a lively 15-year-old who loves animals. She talks with her mother, Anastasia, about a recent trip to the circus, where they saw her favorite bears.
Dasha was born with Down syndrome, and Anastasia says the doctors at the hospital told her her baby would never thrive.
"Everyone was saying, the most reasonable decision is to abandon the child, because it's a cross you'll have to bear all your life," she recalls. "This child will never even understand that you are its father and mother. And your friends and your family will turn away from you."
Anastasia says she couldn't bear to leave her child behind, and after more than a year, she brought Dasha home from the orphanage.
She never regretted her decision. Instead, she thinks the doctors who advised her were in need of help and better information themselves.
But this Russian habit of placing disabled children in orphanages has changed little over the years, according to a new report highlighting problems with Russia's treatment of disabled kids.
Human Rights Watch, the U.S.-based group, says that nearly 30 percent of Russian children with disabilities live in state orphanages.
"We do believe that people are still being advised to institutionalize their children," says Andrea Mazzarino, a researcher at Human Rights Watch, which recently released its report. "We spoke with several parents who heard that advice within the past two years in Moscow alone."
Mazzarino says that once disabled children are consigned to state orphanages, there's little chance that they'll be given the attention needed to thrive.
Instances Of Poor Treatment
In many cases, she says, they face ill treatment.
"We visited 10 institutions across Russia, and in the vast majority, we either heard about, or we witnessed firsthand, severe forms of violence and neglect," she says, including children being tied up and sedated, beaten or doused with cold water.
She says children with severe disabilities are confined to so-called "lying down" rooms, where they spend their days in cribs, kept in diapers and fed through tubes.
Photos from her report show teenagers with the physical development of preschoolers after years of confinement.
Even in the most developed countries, advocates struggle to obtain civil rights and humane treatment for disabled people, but Russia seems to be moving slower than most.
Andrei Dombrovsky, an activist for the rights of disabled people, thinks the problem dates back to the Soviet period, when the official ideology called for the creation of an ideal society.
"The country was striving toward something very perfect, in which you cannot see a disabled person, because he is not perfect," says Dombrovsky, who is based in St. Petersburg. "And that's why all disabled people were living in the institutions."
He volunteers to help young adults make the transition from institutions to life on their own.
From A Children's Institution To An Adult Institution
For most disabled children who grow up in Russian orphanages, the only transition they'll make is to another institution like an adult facility outside St. Petersburg that takes them when they're 18.
It's a sprawling labyrinth of hallways with locked wards. Some residents, mostly very old, doze in chairs, or make their way slowly down the halls.
With her pink hair and punky clothes, 18-year-old Anya is a whirlwind of energy in this place, when she's let out of the women's ward to meet visitors.
But Anya has virtually no education, and limited prospects for getting out of the institution.
Evgenia Shtil is the founder of a charity called Children of Pavlovsk, which helps young people who grow out of one of Russia's biggest orphanages.
Russian law actually calls for the state to provide apartments for disabled people who are capable of living on their own.
The catch, Shtil says, is that applicants have to prove to a panel of experts that they're ready for life in the community.
"It's really hard for a person like that prove to the panel that they're able to cope with everyday life," Shtil says. "The only reason for that is that for the first 18 years of their lives, nothing was done to help them achieve that goal."
Russia says it's taking some steps to address these issues and help children in institutions to move into the community.
The government has an action strategy that it says will bring Russia into compliance with the international Convention on the Rights of the Child.
Advocates like Shtil and Dombrovsky are working to help rescue the young people who are products of life in Russia's orphanages for disabled children.
But they say, and human rights groups agree, that Russia needs to reform the process from the moment a disabled child is born.
Corey Flintoff is NPR's Moscow correspondent. Follow him @CoreyFlintoff.
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