An Actor With Down Syndrome Makes It Big In
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
"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
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
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
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
Koloskov is confident, though, that the winds are beginning to
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