Boy’s films confront Down’s syndrome stigma in Serbia
Like many his age, 14-year-old Aksentije wanted to become a secret agent, at least on the big screen like his idol Antonio Banderas.
Despite a gloomy prognosis at birth, when doctors gave him only a year to live, and growing up with Down’s syndrome in a country where such disabilities carry an unshakeable social stigma, Aksentije has achieved his dream.
For several years, he and his cousin Aleksandra, a drama student, have been making short films, including the touching and optimistic The Story, which won a special prize at a film festival in the northern city of Novi Sad.
"I have always wanted to be an actor, this is why we made this film," said Aksentije, whose nickname is Aca, proudly. "We worked a lot; every day we had to repeat (scenes), but that was not difficult at all.”
The Story relates not only to Aksentije’s own struggle but also to that of disabled Serbians whose aspirations are often thwarted by social prejudice or shame.
"This is not a story about me, this is a story about life,” his character says at the end of the film. “Life is like a game: despite all obstacles, you reach the goal.”
His inspiration came straight from Hollywood.
"I wanted to be like Antonio Banderas, a secret agent who saves the world," said Aksentije referring to roles played by the US-based Spanish movie star.
Hidden and marginalized
Making the film was at times a battle given the limited opportunities for disabled people in the Aksentije’s central hometown of Aleksandrovac.
According to agencies like UNICEF, Save the Children and the Organisation for Economic Cooperation and Development (OECD), only 10 to 20 percent of Serbia’s disabled children attend schools, both regular and special ones.
The others remain at home or in special institutions, often without access to any activities or community services.
Aleksandrovac has no special high school classes for the disabled, so Aca travels 40 kilometres (25 miles) to the town of Krusevac to attend lectures.
Aca’s father Sasa and a group of other parents of disabled children, meanwhile, have formed an association offering extracurricular activities for people with all sorts of handicaps.
Everyone from youngsters to 40-year-olds can learn to weave, sew or take part in other activities – but most importantly break out of their isolation and work on their social skills.
The centre now has its own premises, with programmes funded by local authorities and the welfare ministry.
"There are still many disabled who don’t want to come, either they are ashamed or their parents do not allow them to come," bemoaned Sasa. "Certain parents never accept the handicap of their child, so they remain confined to their homes.”
Diana Chiriacescu of Handicap International, a French non-governmental group monitoring and assisting the disabled in Serbia for more than 15 years, said the "situation is slowly but progressively improving."
But she stressed that the "disabled in Serbia remain excluded and marginalised."
Official data is inconsistent but various estimates show that seven to 10 percent of Serbia’s population suffer some form of disability.
The country passed an anti-discrimination law in 2006 as well as a national strategy for the disabled but frequent political changes have prevented a full reform of the system, according to Chiriacescu.
"There is progress compared to 10 years ago but there are always things that remain to be done before we can say the situation is good and that society has really included these people," she said.
Key hurdles are a lack of community and support services such as education, home care and personal assistance for disabled and a modern system to allow mainstreaming some handicapped children in schools.
"Among the problems is an inadequate or poor educational system but also high level of unemployment among this population," said Vesna Bogdanovic of Belgrade’s Centre for Development of Inclusive Society.
She said a majority of disabled are not informed of their right to various services but at any rate these are "often inefficient or do not exist."
And many proposed solutions cannot be implemented as "our public is not sensitive towards the problems of disabled," she added. "The disabled remain at home because of prejudices in the community they live in, because of architectural barriers, lack of services aimed at them and because they are part of the poorer population in Serbia."
Fortunately, this is no longer the case for young Aca, whose films aim to turn the spotlight on the plight of mentally and physically disabled Serbians.