State power versus disability

Elena Savina
11 September 2009

Why should the state have social responsibilities? There are people who can simply be left alone, and there are people who cannot manage without help. These are primarily people whose ability to look after themselves and take their place in society is restricted for any one of many reasons. The state may not help them directly, but may give active help to the people who take the initiative and perform these functions on its behalf. This is the standard picture. The reality looks quite different.

The NGO Turmalin Centre offers opportunities for social rehabilitation to people with serious mental and physical disabilities.  On 5 August the Centre received a letter from the local authority to the effect that the premises they had occupied since April 2003 would have to be vacated by 1 September. When employees of the Centre tried to find out what was going on, they were told that if they didn't comply, all their property would be thrown out on to the street. The "non-residential premises at 26 ulitsa Boris Galushkina" were now to be managed by "Moscow city authorities for the organisation of home-based leisure, social and education work, health, fitness and sports activities."

The Turmalin Centre was not considered to be meeting these objectives, possibly because it was helping people, rather than bringing in revenue to the local authority.  Disabled people from all over Moscow came to the Centre. Parents who brought their seriously ill adult children here paid as much as they could, i.e. not very much, and some didn't pay at all.

Employees of the Centre and specialist doctors worked there because they considered that what they were doing matters.  They received very small salaries. And they would have continued to receive them, had it not been for the letters from the acting head of the local authority, S.A. Varfolomeeva and the deputy mayor of Moscow V.N. Silkin, which effectively put a stop to the work of the centre.

It appears that Turmalin is considered unnecessary by the government, Moscow city and the Alexeevsky district.  It's a place for people who, outside the centre, have no chance of experiencing the normal human pleasures: socialising, making friends, holding hands and being told that they can do something they used to think was impossible, and are doing it well. No one needs these people, apart from their parents, who are already used to suffering for the pain of their children. For seven years these people had somewhere to go. The young adults whose life had been made a misery by their condition stopped screaming and began smiling.

"I've been taking my son to Turmalin for over six years, since the Centre opened. Sasha has autism and learning difficulties.  He doesn't talk. When we first came here, he was very restless.  He was thought to be unteachable and couldn't be in a room with anyone else. Now he socialises with the people here, and attends the workshops. He loves it here and he smiles every time we come," says Natalya Nikolaevna, Sasha's mother.

"State institutions pay no attention to people like Sasha, and life in special homes for disabled children is like life in prison. In the summer holidays my son stays at home and his condition deteriorates. If the Centre closes for good, he will start to degenerate. It will be bad for him, and for me too."

The mother of another boy says: "We've been coming here for more than four years now. Before that we stayed at home. When we came to Turmalin he was in quite a bad way. I didn't think that my grown-up "difficult" child would be accepted anywhere.  I thought we were doomed to sit at home until our old age. At first he would come here for two hours, then we went to all the workshops:  he tried candles and ceramics and now he goes to the weaving workshop. He's very enthusiastic about the Centre and gets bored in the holidays. If he sits at home by himself, without his circle of friends, I don't know what he'll do. Here he has his teachers, his doctors and his friends.

"In the Centre his life is much fuller than many healthy people's lives, and richer than mine. I only manage a visit to the theatre twice a year, but here they make up plays, put them on and act in them. He lives a real, full life. I'm glad I found this centre. We'll have nowhere to go from here." 

The 30 people who go to Turmalin all have the same problem - multiple disabilities. "When there is just one disability, you can find somewhere for your child, but schools don't accept children like ours as they are too difficult. The Centre is the best thing there could be for them," say the parents.

"The people who have been here for a long time simply attend the various workshops, which include carpentry, candle-making, ceramics and weaving. When a child comes here for the first time, he's taken around all the workshops and chooses one of them, but he's also allowed to go to all the others and try them out. The approach is individual-based.  All the lessons are conducted by specialist doctors, who know what's best for every child."

"Every morning the young people tell everyone what they did the evening before, about their morning journey and what's going to happen during the course of the day. In good weather they go for walks in Sokolniki Park.  In the spring they made nesting boxes and hung them in the trees. They are all great friends and have excellent relationships with the teachers," the parents say.

"We find our grandson very difficult as he can't communicate," says Klavdia Ivanovna, the grandmother of 23-year-old Boris. "He went to a special school where he learned to read, but when he was 18, there was nowhere for him to go. There was no question of sending him to a home. I found out about this centre by chance, and we came to see what it was like. We were given a very warm reception and my grandson joined the pottery workshop. He gets praise, and he's pleased that he's getting better at it. He's autistic, so it's difficult for him to socialise, but here he has appeared on stage - he recites poems, he talks and makes friends with the others.

"Everyone likes to be with other people. Our kids may be ill, but they're still people, and they want to be like everyone else. At the Centre each child has a teacher and they know they are surrounded by adults who care."

The parents of the children who come to Turmalin say that private lessons are incredibly expensive, and "no one can afford it". In any case the children would be stuck at home, but "here they have their mates, their own circle, they socialise, they're together, and they feel confident." "It only costs kopecks, and those who can't afford it don't pay at all, although we ourselves understand it's only charity that keeps us afloat."

The head of the ceramics workshop Maria Slastenina says: "I've been working at the centre for five years. I came here by chance. I like working here and I don't want to leave. I feel that my life has changed considerably. Working with these young people changes the way you look at life. They open themselves up to us in all their diversity: they have an unusual inner world, an incredibly genuine and pure attitude to life and to everything going on around them. This has a very profound effect on everyone. When you immerse yourself in their world, you get a great opportunity to remain an optimist in our terrifying world.  You can take a fresh look at everything and develop a real love of life.

"I had a call recently about the letter saying we must vacate the premises by 1 September. We're in shock.  We've been on training courses, we have a lot of plans and have devised new methods for working with the kids. We miss them and they miss us. It's true we we've been given a small period of grace to find new premises, but we're completely at a loss, and appalled by the situation."

The head of the Turmalin centre is Rudolf Grigoryan, a remedial teacher and social therapist.   He says  "We were officially registered on 30 April 2003. The idea for this centre had come up earlier, because we had developed teaching techniques that were unique in Russia. They were unsuitable for state institutions, but the idea was there and the Centre was founded. Until 2006 Turmalin had a contract with social services and a rental agreement with the Alexeevsky district council. This was all fine until 2007, when the head of the council, Maria Antonovna Feneva, said that she couldn't sign any more agreement with the Centre, as the premises didn't belong to the council.

"We began looking for the owner so as to be able to continue our work. By that time we were already part of the Moscow City Department of Social Protection's integrated rehabilitation programme, we were working with the Committee for Public Affairs, and we had connections with other foundations.  We couldn't just stop doing all that.

"The premises turned out to belong to no one, i.e. they belong to the city. There had been numerous requests from the council and the administration that the premises should be transferred to the local authority, as they were short of space. We were categorically opposed to this decision, as we had been told several times that the Centre's social rehabilitation programme was providing something not covered by the local authority. They are responsible for leisure, fitness, social and educational activities, and our work doesn't come into any of these categories. It was suggested that we should work with local people on leisure activities, but we think this is like asking the local authority to bake cakes. Not, of course, impossible, but one has to consider what the cakes would actually be like and who would eat them.  The local authority may not bake cakes, but the quality of its work leaves a lot to be desired.

"We don't want to bake cakes, our job is social rehabilitation. We have highly-qualified specialists and a considerable understanding of the problems.  Our centre has musical therapists, psychologists and specialist doctors.  We can't change the nature of our work just to get on to the local authority list.  We said all this to the administration, but it made no difference.

"We are prepared to pay Moscow city authorities a reduced rent.  We are looking for premises, which would offer us this possibility as well as meeting our needs in rehabilitating people with learning difficulties (autism) and physical disabilities.  So far we have not been offered any alternative or help.

"The President talks about working with disabled people and integration into the European community.  Prime Minister Putin says we must ensure the parents of disabled children have the opportunity to work.  Now it's those parents that are being kicked out on to the street together with their children. Several of our parents work at the Centre.

"At the moment we pay taxes, but if the Centre closes down we'll lose our jobs, end up at the labour exchange and be a burden on the city budget. We're trying to preserve something that already exists. We aren't asking the Moscow city government to pay our salaries, we are simply saying that we need new premises. We ourselves will find the money to pay the reduced rent.

"We do everything for ourselves and we are law-abiding citizens, but we have no chance of working, as our work is not appreciated. We are told everyone knows about what we do, and the Moscow city government has said that our work is socially meaningful.   We're on the city government's register of NGOs, and we have certificates and an emblem from the Committee for Public Affairs. But no premises.

"It costs the state 42,000 rubles (1330 USD) a month to keep a disabled person in a special home.  If you look after the child at home, he receives social benefits, so we're saving the government money. We're not trying to replace state institutions or duplicating their work.  We offer an alternative for people who want their children to live at home, but also be able to socialise and receive help from qualified specialists. Parents choose us when they bring their children here, so that they can work and be socially active. Now they are prepared to take to the streets to organise a picket."

Employees of the centre are only asking the government for the chance to keep working, though citizens have every reason to demand, rather than ask. To demand that the local authorities and the mayor's office not only stop interfering with Turmalin and others like them, but make it possible for them to carry out the social work which the government and the local authorities don't do.  

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