Challenging drama in Russia

Sarah Rainsford BBC correspondent in Moscow

In a dingy basement theatre on a Moscow backstreet a director shouts instructions to his cast.

The actors celebrate at the end of the show

On stage are six adult actors with Down's syndrome, for a last minute run-through of a play that took more than two years to rehearse.

When the cast were first selected some of the actors could barely talk.

Like the majority of Russians with Down's they'd had no speech therapy and no formal education. But spurred-on by a dedicated director they've learned large chunks of dialogue, cues and songs.

Sergei Makarov is 37 and plays the male lead, Captain Kopeikin. In a pause between acts he tells me this theatre group has become his life.

"Sergei is part of a collective now; he understands that he's not alone. And he's become so grown-up, so responsible!," his mother Saieema enthuses, watching proudly from the wings.

When Sergei was young Saieema couldn't persuade a single kindergarten or school to accept him.

"The doctors told me we should put him in care and try for another child instead. They said nothing good would come of him," she tells me. But Saieema defied the medics and struggled to teach her son at home. She says the theatre has transformed his life.

Exception in the spotlight

The six men and women preparing to step into the spotlight are a rare exception in Russia, where most people with Down's remain deep in the shadows.

Sergei Makarov says the theatre group has become his life

There are no official statistics on the syndrome here - nobody in authority is counting. But charity groups estimate that around 2,000 babies are born with Down's each year.

At least eighty percent of those children are taken directly into state institutions.

Children with the condition need specialist care and attention from birth - something that is not provided in state care. Instead they're officially labelled unfit for education, locked-up for life alongside the mentally ill.

"State orphanages have no information about Down's and no specialist educators," explains Irina Menshenina, fundraising director for the Moscow charity Downside Up.

"But the main problem is a lack of any desire to provide that education or development."

Urged to abandon child

Masha Bystrova spent her first year in an institution before her parents brought her home. She was underfed and could barely crawl.

Now five years old Masha is the picture of contentment singing chirpily on her father's knee.

Masha's parents believe their daughter is more advanced than many girls her age. But when she was born with Down's her mother Elena had no idea what was possible.

Elena says doctors pressured her to abandon Masha, a decision that nearly broke her heart.

"The doctor told me that children with Downs either die or live as invalids," Elena says. "She told me my child was doomed and if I took her home, my whole family would live as social outcasts."

Masha's first year was in an institution

The myths surrounding Down's remain powerful here. Many still believe the condition is a punishment for alcoholism.

Charities like Downside Up are working to change those attitudes.

The organisation runs an early intervention centre that aims to keep families together. They offer group sessions with specialists for parents and toddlers, all kinds of therapy and vital information for new parents.

Staff are trying to educate doctors too, teaching them that children with Down's do have potential - and that there is an alternative to life in an institution.

But Irina Menshenina says the charity is battling against prejudice.

"I think it's our mentality, I mean the soviet mentality, to get rid of the problem," she says. "To pretend there is no need, that there are no people with disabilities that need special care and special attention."

Back at the theatre, Sergei and the cast refuse to be ignored any longer. A small crowd has squeezed into the studio to watch the powerful performance.

As the actors step forward one by one, the appreciative applause for their achievement suggests that attitudes in Moscow at least, are beginning to change slowly.

But there is still a long way to go in Russia until this kind of event becomes the norm; a huge struggle ahead to ensure the next generation with Down's syndrome isn't written-off at birth like this one.