By RFE RL
(RFE/RL) — In late December, Snezhana Mitina received a tearful phone call from her friend Svetlana. Sobbing, Svetlana explained she had just read a newspaper article calling for babies with mental disabilities to be killed at birth.
The author, Aleksandr Nikonov, used the word “debil” — a deeply offensive term in Russian — to characterize such children. He argued that parents should have the right to euthanize newborns diagnosed with mental retardation and other developmental disabilities.
The article, which ran under the headline “Finish Them Off, So They Don’t Suffer,” went on to describe what Nikonov termed “postnatal abortion” as an act of mercy.
Mitina and her friend, Svetlana Shtarkova — both mothers of children with developmental disabilities — decided to take action. They filed a complaint with the Russian Union of Journalists against Nikonov, a correspondent for the popular tabloid “Speed-Info.”
The two women say their aim is not to punish Nikonov but to raise the alarm about Russia’s culture of intolerance toward disabled people. Shtarkova made an emotional appeal at a hearing last week at the journalists’ union.
“The opinion expressed by the author is not unique; statistics show that one-fourth of Russians share similar views,” Shtarkova told the February 2 hearing. “Complete strangers come up to me in the street and tell me that I’m depraved and deserve my fate. Doctors and social workers refuse to do their jobs, just because my child is severely disabled.”
The lawyer representing the two mothers, Pyotr Kucherenko, told the board that Nikonov’s proposal to put “flawed” babies to death only fueled discrimination and was dangerously reminiscent of the theories of racial superiority upheld by Nazi Germany.
Nikonov, however, was unrepentant.
“Let me introduce myself: I am Adolf Hitler. This is the way people want to portray me,” Nikonov says. “But the real bastards are those who tell me, ‘Yes, it is good and fair that people are in pain. We’ll look on and say people can suffer, as long as our scholarly conception of humaneness is not affected.’ To hell with you. People shouldn’t suffer. This is my opinion, and you won’t shut me up.”
Nikonov’s arguments failed to convince the Union of Journalists, which ruled that his article bordered on extremism and asked “Speed-Info” to publish a rebuttal by Mitina and Shtarkova.
Although the union’s complaints board has no legal authority, plaintiffs and defendants at the hearing formally pledge to fulfill the board’s recommendations. The ruling is a symbolic victory for the two mothers, who have relentlessly defended their children’s right to life.
Shtarkova keeps several blogs — one of them on RFE/RL’s Russian Service website and the other on livejournal — devoted to her 3-year-old son, Ivan, who was born with severe brain damage and other birth defects as a result of a rare genetic disorder that went undetected during Shtarkova’s pregnancy.
Mitina also has a blog and chairs an organization to improve understanding of Hunter syndrome — a genetic disease that prevents the body from eliminating toxins, leading to severe physical and mental ailments.
Her son Pavel, now 10 years old, was diagnosed with Hunter syndrome when he was still an infant. The disease causes extreme pain in its sufferers, and Mitina says Pavel’s condition steadily grew worse, with little help from either the state or the medical community.
“He had this terrible word: ‘melp.’ It came from ‘Mommy’ and ‘help’ — that’s what he screamed when he was in a lot of pain,” Mitina says. “When we called ambulances, the doctors would say there was nothing they could do. The physicians who treated us for years said our child was dying as a result of the syndrome. It was awful.”
In 2006, news that U.S. scientists had come up with medication to help treat the painful effects of the disease gave Mitina new hope.
The first obstacle was cost: almost $25,000 per week. The second was the indifference she encountered at the Russian Health Ministry, which flatly turned down her request to import the drug.
“They told me: Find 20 children, have five articles in the press and three television reports, and then we’ll talk about it,” she recounts.
Mitina launched a campaign to find other Russian families raising children with Hunter syndrome. But health officials, she says, kept increasing the minimum number of sufferers needed to register the drug in Russia.
Only after she had rallied 215 families did the ministry finally agree, in 2008, to make the medication available to Russian patients.
Thanks to her efforts, Pavel and dozens of other Hunter syndrome patients are receiving treatment, paid for by regional authorities. Although the long-term prognosis for Hunter patients remains grim — many patients die before the age of 20 — Mitina says Pavel’s quality of life has improved dramatically and he no longer suffers from constant pain. Mitina’s organization is now working to persuade all local governments across the country to buy the medication.
Her battle underscores Russia’s reluctance to care for its citizens with disabilities, widely regarded as burdens for society. The issue is gaining traction as Russia faces a severe population crisis brought on by a low birthrate and poor pediatric health.
Over the next two decades, Russia’s population is expected to shrink by 17 million people. Faced with such statistics, advocates of people with disabilities say the country cannot afford to let prejudice stand in the way of caring for the country’s estimated 15 million registered “invalids” — adults and children suffering from a range of physical and mental ailments.
So far, however, the state has yet to weigh in on the debate over Nikonov’s controversial article.
Lawyer Kucherenko says the official silence on a highly public proposal to kill babies with developmental disabilities shows that Russia is in the throes of a deep moral crisis.
“This article demonstrates the moral crisis that Russia has witnessed in recent years,” Kucherenko says. “Our law-enforcement agencies are actively combating extremism, but why isn’t the Prosecutor-General’s Office reacting [to Nikonov’s article]? We are dealing with a bona fide extremist case discriminating against a social group.”
Ordinary citizens, by contrast, have reacted strongly. A video report on the case unleashed a heated debate on the website of RFE/RL’s Russian Service, a sign of how divided Russians still are on the issue of physical and mental disabilities.
“Is it really more humane to let a child suffer all his life? What happens when the parents die and the child is helpless?” asked one reader.
“People, especially Nikonov, should keep in mind that a child is not anyone’s property, he is a full-fledged person. Nobody has the right to decide whether he should live or die,” read another post.
Despite the grief caused to people with disabilities and their families, Nikonov’s article has already had the unintended positive effect of prompting a rare discussion on the plight of one of Russia’s most vulnerable populations.
Svetlana Sorokina, a television reporter and member of the Union of Journalists’ complaints board, says Nikonov “voiced the opinion of many Russians” on the topic and sparked debate.
“In a sense, what he did was useful, because these issues exist and they must be discussed,” Sorokina says. “We must know our opinions, why we think that way, and what the consequences are.”
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