The Blind Girl vs. Putin: A Plea for Russia’s Handicapped Orphans

Apart from healthy orphans, Moscow’s new law prohibits children who need medical help unavailable in Russia from being adopted by Americans

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Alexander Zemlianichenko / AP

People carry posters of Russian President Vladimir Putin with the words reading "For Russia without Herod!" during a rally against the country's adoption ban in Moscow on Jan. 13, 2013

The blowback against Russia’s ban on American adoptions has taken many forms over the past few weeks, ever since President Vladimir Putin made it illegal as of this month for U.S. families to give Russian orphans a home. Over the weekend, tens of thousands of people marched through the frigid streets of Moscow to denounce the lawmakers who voted for the ban, throwing hundreds of portraits of the legislators — stamped with “Shame!” — into a filthy dumpster at the end of the march. A petition with 100,000 signatures has meanwhile demanded that the ban be repealed, and everyone from politicians to movie stars has denounced it as a barbaric attempt to turn orphans into political cannon fodder. But no statement of outrage has been more incisive than that of Natalia Pisarenko, a blind teenager from the southern Russian city of Rostov, who wrote an appeal to Putin on her blog.

Pisarenko, who lost her sight to a genetic defect at birth, pointed out perhaps the cruelest aspect of Putin’s adoption ban: the impact it will have on handicapped orphans forced to seek help from Russia’s corrupt and antiquated medical system. “As far as Russian doctors are concerned, I am a child afflicted with a disease of unknown origin who cannot in any way be cured of blindness,” she wrote on Jan. 6. “But in Germany and America I am a patient whose sight the doctors are trying to restore.” Written with lashing irony at Putin’s legislative “wisdom,” Pisarenko’s letter hits out at the President by name: “Vladimir Vladimirovich, children with grave genetic diseases are not adopted by our families, because these children need modern medicine, which in Russia does not exist.”

(MORE: Russia’s Adoption Politics: Defeated Families Caught in a Diplomatic Tailspin)

The clarion call eroded the argument the Kremlin has used in defending the adoption ban, which was conceived last year as political revenge for a recent piece of U.S. human-rights legislation. On Dec. 20, when Putin was asked at a press conference to explain the ban on American adoptions, he said: “We have to do this ourselves. We must ourselves stimulate the adoption of orphans or children left without guardianship.” Within days, the Kremlin ombudsman for children’s rights, Pavel Astakhov, announced a program he called “Russia without orphans,” which sets the unlikely goal of finding families for all of Russia’s 700,000 orphans in the course of five to seven years. (That would require increasing the rate of adoptions in Russia more than tenfold, and that is assuming the number of orphans ceases to grow at the current rate of 110,000 per year.) After signing the adoption ban into law, Putin also pledged a set of measures to improve conditions in Russia’s orphanages.

But Putin and his supporters have so far sidestepped the issue of handicapped orphans, hundreds of whom have been adopted by American families in recent years. Although she is not herself up for adoption, Pisarenko has shined a spotlight on the fate of disabled orphans, like Maxim Kargopoltsev, a 14-year-old with a genetic disorder who was months away from being adopted by an American family before the ban was imposed. Amid the outcry over such cases, a lawmaker from Putin’s political party, Robert Shlegel, proposed a legal exemption to the ban for the 45,000 children with disabilities now living in Russian orphanages. But after the party declined to discuss his proposal in parliament, Shlegel withdrew it last week.

Overall, more than 60,000 Russian orphans have found homes in the U.S. since the fall of the Soviet Union, and each year, two or three dozen orphans with severe disabilities are adopted by American families, according to the Russian nonprofit Pravo Rebyonka (The Right of a Child). Pisarenko, who lives with her biological parents, outlined in painful detail the hardships that these children would have faced in Russia, even if they had been adopted by loving Russian families.

(MORE: Russian Adoption: What Happens When a Parent Gives Up?)

After she was born, Pisarenko wrote, it took Russian doctors three months just to figure out that she is blind. Her life then became a withering marathon of doctors’ visits that failed even to result in a clear diagnosis despite the bribes her family paid to the physicians. Years later, it was a German clinic that finally diagnosed her genetic disorder and an American one that pinpointed the defective gene. “Soon fate will give me the chance to restore my sight. And that will happen in the land our enemies, America,” she wrote sarcastically, adding, “Vladimir Vladimirovich, here’s another state secret for you: the Russian state does not have the money to heal its children.”

In the past week, her appeal has gotten so much media attention that Putin’s spokesman, Dmitri Peskov, was forced to respond to it on Jan. 12, saying the Kremlin would “take it into consideration.” Speaking to the Vedomosti newspaper, he also promised that local authorities would honor all their “responsibilities to this invalid girl.” Pisarenko did not respond to TIME’s e-mailed requests for comment, and she wrote on her blog that she has been inundated with a lot of unwanted attention from journalists. But judging by her latest blog entries, officials in Rostov have rushed to comply with the Kremlin’s demands, albeit in a typically overzealous way. They have called her parents in for “talks” at the governor’s office, as well as the local health and education ministries. “Dad says that they are going to start pressuring us now,” she wrote on Jan. 12.

But even if all the attention helps in some way to improve Pisarenko’s condition, it is unlikely to resolve the underlying problems that orphans with disabilities face in Russia, says Sergei Koloskov, head of the Russian Association to Protect Children with Down Syndrome. “When it comes to caring for mentally handicapped children, we are at the stage America was at the start of the last century,” he tells TIME. The tendency in Russia now is to lock such children away in institutions, where they receive little specialized care. Once they reach adulthood, the stigma of mental illness seldom allows Russians with Down syndrome to work, live on their own or otherwise integrate into society in ways that Western mental-health professionals usually encourage them to do. “So for such children to be adopted by an American family is like winning the lottery,” Koloskov says. “It allows them to leap 100 years into the future of medical care.”

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That gateway has now been shut, at least for children seeking adoption in the U.S., and it is unlikely to end there. The U.S. legislation that instigated Russia’s adoption ban — the so-called Magnitsky Act — denies U.S. visas and bank accounts to Russian officials implicated in the torture and death of a Russian activist and whistle-blower, Sergei Magnitsky, in 2009. Since President Barack Obama signed the Magnitsky Act on Dec. 14, many Western nations have promised to enact similar legislation. But Russian lawmakers, who voted almost unanimously to pass the ban on American adoptions in response, have said they would impose similar adoption bans on any country that enacts its own version of the Magnitsky Act. “The cynicism here is boundless,” says Boris Altschuler, the head of Pravo Rebyonka and a member of the Public Chamber, an advisory body to the state.

Altschuler, a leading crusader for children’s rights in Russia, points out that having Western medical insurance and regular access to specialized clinics is the only way a Russian orphan with disabilities can receive the best care. “Even for those lucky enough to find guardians in Russia, they still need to take trips to the West for a lot of their treatment,” Altschuler says. “And finding the money and time for such trips places enormous strain on the guardians.”

The ones best placed to take on such a burden in Russia are of course the wealthy and powerful, and in concluding her open letter, Pisarenko appeals directly to one such man. “Mr. President!” she wrote. “Surprise us with another one of your wise moves — adopt five, ten abandoned children with severe genetic disorders, and we will follow your example.” That challenge, however, has yet to receive a response from Vladimir Vladimirovich.

MORE: Why Has Moscow Passed a Bill to Ban U.S. Adoption of Russian Orphans?