An Actor With Down Syndrome Makes It Big In Moscow
By Rebecca Reich (Special to The Moscow Times)

Fame came unexpectedly to Moscow's newest film star at the recent Sochi film festival. Born with Down Syndrome, Sergei Makarov never got the chance to go to acting school. In fact, he never went to school at all.

There were precious few options for the mentally disabled in the Soviet Union, and the thought that Makarov might someday join a successful theater troupe -- much less star in an award-winning film -- never crossed anyone's mind.

Then Makarov's life turned around a month ago when the Kinotavr festival gave four prizes, including the top Golden Rose, to "Starukhi," a debut film by Gennady Sidorov. In the film, Makarov, 37, plays a disabled man from an impoverished village in the north whose mother runs off and leaves him in the care of a handful of grumpy old women. With the publicity that followed, the film drew nationwide attention to a question long swept under the Soviet rug: What to do about the mentally disabled?

Only difference -- 40 years
Many of the 2,000 children born in Russia every year with the extra chromosome that causes Down Syndrome are orphans, having been given up by their parents at birth to a lifetime of institutionalization that has undergone almost no practical reform since the Soviet Union fell apart.

"I have some very frightening footage from American institutions from 1968," said Sergei Koloskov, head of the Down Syndrome Association, which played a key role in Makarov's onscreen success. "When I show people footage from Russian institutions today, I say: 'Look, there's no difference. The only difference is 40 years.'"

The Down Syndrome Association tries to bring Russia up to date on a daily level by overseeing some 1,000 families through about 30 parent support groups, including 300 families in Moscow. Another active advocate of the rights of people with Down Syndrome is the charity Downside Up, which provides educational programs for children and training for their teachers. But Koloskov is also bent on changing policy from above. "There's an enormous gap between what the government says it will do and what it does in practice," he said.

New laws, old approaches
While several new laws guarantee education for children with Down Syndrome, Koloskov's research has found that the situation hasn't much changed since Makarov was a boy. In addition to there being no governmental control over local "internats" -- the system of children's homes is in charge of nearly half a million children -- old Soviet appointees are reluctant to put the new legislation into effect.

Conditions are worst for the 29,000 children deemed moderate to severe cases and thrust into institutions under the Labor Ministry, Koloskov said. "These are not educational institutions. There are absolutely no teachers, or at least very few. They relate to the children as they would to animals or little beasts: On the outside they look like people, but inside they don't feel or think anything."

Compared to the average Russian with Down Syndrome, Makarov has led a charmed life. Instead of giving him up, his mother, Saima Makarova, kept him at home and tried to encourage his dramatic talents. "He always had a leaning toward the theater, toward imitation," Makarova said in a recent telephone interview.

But it wasn't until Makarova came across a newspaper ad for the Arts Center at the Down Syndrome Association that things began to go her son's way.

"One way that these people can realize themselves is through creativity, because their emotional side is more developed than their intellectual side," Koloskov said.

Theater of Simple Souls
In addition to running workshops in dancing, painting and music, the Arts Center opened a drama troupe in 1999 called the Theater of Simple Souls, and Makarov became a member.

The idea for the theater originated with its present director, Igor Neupokoyev, who had been acting professionally for 12 years. Although Neupokoyev volunteered for the Down Syndrome Association before taking on the troupe and to this day receives no pay, he insisted that his goal is not charity but a new kind of art.

"I wanted to do a Gogol play, and it seemed to me that they were best fit to play his works," Neupokoyev said. "They don't even have to act, because they are ready-made Gogol types as soon as they put on 19th-century costumes."

But Neupokoyev's choice of repertoire had an added significance. Instead of producing one of Gogol's comic plays, he adapted a short story from the novel "Dead Souls" about a one-armed, one-legged veteran named Captain Kopeikin who travels to the capital after the war of 1812 to demand a pension from the emperor, only to get carted out of the city, peg-leg and all.

"The main idea is that an invalid is playing an invalid," Neupokoyev said of his decision to cast Makarov as Kopeikin. "Gogol's story takes place nearly 200 years ago, and the situation hasn't changed. The government is divided from the people, and between them is an abyss."

Getting his troupe up to performance level was more of a challenge. Several of the actors had trouble memorizing lines, and money for sets and materials was scarce. But two years later, Neupokoyev's efforts began to pay off. The show was filmed for the Kultura television channel and shown at the Cannes film festival. And, after 3 1/2 years, "Captain Kopeikin" went on stage.

When film director Gennady Sidorov asked Makarov to star in "Starukhi," or "Old Women," Makarov was only too happy to agree to the two months of harsh filming conditions in a small village in the north. "He feels himself to be an artist," Neupokoyev said.

But no one expected the film to go as far as it did, least of all Neupokoyev. "When they called me and told me to go turn on the TV [for the Sochi awards], I didn't even turn it on. I didn't think it would be anything important," he said.

It was only after the interviews and articles began piling up that Neupokoyev realized how far things had come.

The award was a great step forward for Makarov. "He acted and acted, but when he was judged and told that he was acting well, he began to feel much more serious about it," his mother said.

The triumph, however, was more than just personal. Makarov became a poster-boy for Russia's forgotten community of mentally disabled patients. "He knows that he's been of use to others. He understands that it's about more than just him," Makarova said.

But public relations breaks like Makarov don't come around too often for the Down Syndrome Association. While Koloskov is able to raise money for his programs from foreign organizations and private donors, his primary goal is to see that the federal government sticks to its promise to care for the mentally disabled.

Question of human rights
"I don't think it's a question of money. It's a question of human rights," he said.

In an upcoming association report on nationwide violations, he will demand once again that the government account for the laws it passes.

Koloskov is confident, though, that the winds are beginning to turn.

Neupokoyev is not so sure. At least in Gogol's story, he said, Captain Kopeikin got an audience with a minister. "I think that today an invalid would never be received by an official. Today, all an invalid can do is go through the metro cars and ask for a few kopeks."