Disabled Russian Savors His Role

For most of Sergei Makarov’s 37 years, when people looked at him, they saw what Russian society typically sees in those with Down syndrome -- a helpless child.

Today, they’re looking at a movie star.

Makarov played a leading role in “Little Old Ladies,” which took the top prize at Russia’s most important film festival this year -- a breakthrough in a country where attitudes toward the disabled are decades behind those in the West. The movie is one of 13 films featured in Russian Film Week, which runs through Nov. 2 in New York.

“What he did is practically the flight of [Yuri] Gagarin,” the first man in space, said Makarov’s father, Valery.

Makarov’s modest fame stands out in a country with a history of pressuring parents into placing mentally disabled children in institutions, where abuse and neglect were rampant.

Although attitudes are slowly changing, activists say that the vast majority of children with Down syndrome still end up in the state’s care and that cruelty still abounds in orphanages. Even those who remain with their families have few opportunities to realize their potential.

Makarov’s parents refused to give up Sergei, but no school in their Moscow suburb would take him. His mother, Saima, taught him herself -- despite discouragement from others. Officials said it wasn’t worth educating him because he was sure to die by age 16 of the physical complications associated with Down syndrome.

“You can turn him inside out, but you’ll never make anything out of him,” she recalled a doctor telling her.

Three years ago, at age 34, Makarov got the chance to prove otherwise when his parents stumbled upon Moscow’s Theater of Simple Souls, a troupe of actors with Down syndrome. Makarov joined and took the lead role in a play based on a story by 19th century Russian author Nikolai Gogol.

“It gave him an interest in life. He went to rehearsals, met other kids,” his mother said.

Igor Neupokoyev, a professional actor and the troupe’s volunteer director, said he founded the theater in part to help those with Down syndrome become “complete” people.

“The ability to act is a very human ability,” he said.

Gennady Sidorov was about to embark on his directing debut with “Little Old Ladies” when he discovered Makarov at a Simple Souls performance. He cast Makarov as a goat herder, the only man left in a village of about half a dozen old women.

Makarov seems to relish movie stardom. After a recent Moscow showing of “Little Old Ladies,” he stood near the exit, shaking hands with admirers.

Asked during an interview about his music tastes, he said, “I’m not a bad singer myself” -- and demonstrated with a rendition of “Love Me Tender” -- in English -- in his gruff baritone.

Before he joined the theater, Makarov’s main links to the outside world were television and newspapers, which he reads avidly. He rarely leaves the family’s Moscow apartment unaccompanied because his parents fear neighborhood bullies will tease him or worse.

Still, Makarov said he considered himself lucky.

“I have arms and I have legs,” he said. “There are people who have no arms and no legs.”

Makarov said the 3 1/2 months he spent on location in the northern Russian countryside changed his life. He forged lasting friendships, learned about the movie business and earned his first wages, which he used to pay for long-delayed dental work. Now he hopes that publicity from the movie will help the Simple Souls acquire their own stage.

Nikita Romanenko, who plays a flamboyant city dweller who returns to the village to bury his mother, said he was initially skeptical about working with someone with Down syndrome.

“He turned out to be a very disciplined, very responsive partner who actually helped me a lot in my own role,” Romanenko said.

But Makarov’s parents say they are not holding out for a continuation of his movie career.

“Russian society isn’t ready for this,” Valery Makarov said.

The significance of Makarov’s cinema debut for Russia’s disabled was largely ignored in Russian reviews of the movie and reports from Russia’s biggest film festival, Kinotavr. The movie has had only limited showings in Russia -- in part because the old women’s cussing goes beyond the norms of Russian cinema.

Makarov said he would welcome more acting opportunities, although his main wish for the future was closer to home: “My biggest dream is that my parents live a long, long time and never have any regrets.”

The crowning moment of Makarov’s odyssey came in June when he went to the Black Sea resort of Sochi to help represent “Little Old Ladies” at the Kinotavr festival. When the master of ceremonies announced that the film had won the Golden Rose -- the festival’s top prize -- director Sidorov brought Makarov on stage.

Makarov had not been expecting to make a speech. His father, who was watching the ceremony on television in Moscow, recalled a pang of fear: Would Sergei know what to say in front of all these people?

Taking the prize, Makarov blew a kiss to the audience and then planted one on the Golden Rose.

“Thank you, my friends,” he said. “I love you all.”