Charities which help people with developmental disorders sign a joint working agreement
2 April saw the start of a month-long campaign to raise awareness of autism around the world.
A press conference was held the day before at the Documentary Film Centre where leading Russian charities that help people with mental disabilities gathered to sign a joint working agreement.
“A lot of good things have happened in recent years – disability issues are no longer being hushed up or marginalised. People have started to become more aware of the problems of disability. Unfortunately, the situation is much worse as regards mental disability. A lack of knowledge and awareness has caused society to be afraid of those who suffer from mental illness and, as a result, the public finds it difficult to accept them. An understanding of what constitutes the norm is becoming more and more blurred”, said Advotya Smirnova, founder of the Vykhod charity.
Natalya Vodianova, founder of the Open Hearts Foundation, believes that charities still have much work to do. “Up to now, most Russians have had no idea of the reality of autism and are ignorant of the fact that such a thing can happen. Autism goes largely unreported. A lot of shame is attached to it, as well as a great deal of information on the subject which is difficult to comprehend. Autism when it strikes comes as an enormous shock to families as they have to start their lives again from scratch and re-evaluate everything they do. They are completely unprepared for what has hit them and so don’t know where to turn for help”, she said.
Natalya Zlobina, Director of the Vykhod in Belgorod charity, said that State support was extremely important. “As the charity’s President and mother of a 12-year old boy with autism, I’d like to see the State participating in programmes where charities are active because families have a right to State aid”. She added that people with autism are in constant need of help because “this is a condition that remains with them all their lives”.
Anna Portugalova, founder of the Downside Up charity, also supported the need for regular support for autism sufferers. “We are doing all we can to help people suffering from mental illnesses to lead full and active lives. Support should be comprehensive and extend through various stages of life. Today, we’re joining forces to create a meaningful partnership”.
“All children regardless of their diagnosis need the same thing in key areas such as communication, social interaction, support and inclusion”, said Svyatoslav Dovbnya, a psychologist, children’s neurologist and expert working with the Open Heart Foundation. We hope that NGOs don’t have to forever take the place of the academic community. They must come together and make it impossible for drugs to be used in Russia which supposedly improve speech or brain activity, together with electrical procedures and salt therapy. We need to get together in order to decide what we consider is acceptable. Then, perhaps, the academic community will start to get its act together. At the moment, there aren’t too many ground rules in our area of work”, said Portugalova.
“Children from residential pyscho-neurological facilities come to us every Saturday. We look after them; they work with us and draw cartoons. Some of them, for example, are afraid of escalators, having never seen them before. Or they don’t know what a postman is, or a well. It must always be remembered that these people are entitled by birthright to the same dignity and respect as the rest of us. We are all of equal value”, said Ivan Rozhansky, Director of Life’s Journey, a charity which helps people with developmental disorders.
Autism, or autism spectrum disorder (ASD), is a developmental disorder that manifests itself during the first three years of a child’s life. According to Rosstat, 317,150 children live with autism in Russia. “Autism doesn’t occur because of a person’s sins – it happens to many people around the world. This is normal. The sooner we start realising this the better”, said Vodianova.
In signing this joint working arrangement the charities have signed up to a number of basic principles, i.e. the creation of an integrated system for providing help to people with mental illnesses every step of the way, from initial diagnosis to adulthood in society, building on global scientific know-how and methods whose effectiveness is evidence-based, the reform of pyscho-neurological facilities and public oversight of legal compliance.
“This is not about a person with a mental illness having a hard life and us saying that we can make everything better. No! The point is that this person will go on living, e.g. working, visiting a museum, making friends, being envious of others or dying in jail. Being in a residential facility is bad for everyone but particularly so for those with autism”, said Lyubov Arkus, film director and founder of the Vykhod in St Petersburg charity.
Prior to the Art Fest Film festival, Arkus said “Art is our chief advocate. Film heroes are always finding themselves in a complex relationship with the norm. There are many well-known films that show us just how complicated people can be. Each of us can understand and experience these feelings through art”.
The film festival began with the première of Arkus’s film “Masha: The language of birds” which tells the story of Masha, a student at the Anton’s Right Here Centre. The young girl has autism but she takes singing lessons, is involved in theatre plays, dreams of falling in love and having children. “We must live”, she says. The director said that the film was made in just a week from material accumulated over a five-year period but that it was still a work in progress.
“A week is very little time in which to make a film so people need to be patient with us. However, I still feel this can be a film. Misha is undoubtedly the film’s heroine, a person with enormous self-awareness. She tugs at the heart strings but not out of pity. She is one of us, albeit much tougher than most”, said Arkus.