Translated material
Municipality against disabled people
Why is the state needed in its social form? There are people for whom it is enough just not to interfere, but there are those who need help. First of all, those who, for various reasons, have limited ability to take care of themselves and enter society. The state may not do this itself, but actively helps those people who create their own initiative projects and perform these functions for it. This is the normative picture. The reality looks different.
On August 5, the Tourmaline center , which deals with social rehabilitation of people with severe intellectual and mental disabilities, received a letter from the municipality. The document stated that the premises occupied by the center since April 2003 must be vacated by September 1. The center's employees, trying to figure out what was happening, were promised that if the municipality's demands were not met, the center's property would be thrown out onto the street. In a non-residential premises at the address: st. Boris Galushkina, 26” from now on “the powers of the city of Moscow in the sphere of organizing leisure, social and educational, physical education, health and sports work with the population at the place of residence” should be exercised.
The non-governmental center for social rehabilitation "Turmalin", which was attended by disabled people from all over Moscow, was considered not to carry out such work. Maybe because it helped people, and did not bring income to the municipality. Parents who brought their seriously ill adult children here paid as much as they could, that is, little, and some did not pay at all.
The center's employees, defectologists, worked at the center because they considered their work necessary, and they receive very small salaries for their work. And they would have continued to receive them if not for the letters from the acting head of the municipality S.A. Varfolomeeva and Deputy Mayor of Moscow V.N., who joined her. Silkin, which actually stopped the work of the center.
It turned out that neither the state, nor the city, nor the Alekseevsky district needed a center in which people gathered who were deprived of many human joys outside the center: to communicate, to make friends, to hold hands, to hear that a task that previously seemed impossible was succeeded and you're great. It turned out that these people were not needed by anyone except their parents, who were already accustomed to pain for their children. For seven years these people had somewhere to go. There, the adult children, exhausted by the disease, stopped screaming and smiled.
“I have been taking my son to Tourmaline since the center was founded, for the seventh year. Sasha has autism, mental retardation, and does not speak. When we came here, he was very restless, considered unteachable, and unable to be around anyone. Now he communicates with the guys, studies in workshops, comes here with great joy, smiles when we go here,” says Natalya Nikolaevna, the mother of one of the center’s pupils.
“In government institutions they don’t care for people like Sasha, and in boarding schools, disabled people live like in prison. In the summer, when there are holidays, my son sits at home and gets worse. If the center is closed completely, it will deteriorate. It will be bad for him and it will be bad for me, because I am connected with my child.”
According to the mother of another boy, “We have been coming here for five years, before that we stayed at home. He came to “Tourmaline” in a rather “disassembled” state and I thought that such an adult, “heavy” guy would not be taken anywhere. I thought that we should stay at home until we grow old. At first he studied for two hours, then we visited all the workshops, both candle making and ceramics; now he works in a weaving shop. He is eager to come here, he gets bored during the holidays. If he sits at home alone for a while, without a social circle, I don’t know what he’ll be good for. Here he is surrounded by educational psychologists and his friends, the guys who come here.
His life here is much richer than that of many healthy people, richer than mine. I can afford a theater once every six months, but here they come up with plays themselves, stage them themselves, act them themselves. Here he has a real full life. I’m glad I found this center; we won’t have anywhere else to go from here.”
Thirty adult children come to Tourmaline, all of them have the same problem - a combined diagnosis. “When there is only one diagnosis, it is possible to place the child somewhere else; people like our children are not accepted into schools, children are too complex. This center is the best thing that can be thought of for them,” the parents of those who come here for help are sure.
“The older ones just go to workshops, carpentry, candle making, ceramics, weaving. When a child comes for the first time, he is taken through all the workshops and taken to one, but he is allowed to come to all the others and try everything. All classes are conducted by speech pathologists who know what is good for a child, what is necessary, and what is harmful. Here there is an individual approach to the person, the employees know what is best for each specific person.
Every morning the guys tell us what happened in the evening, how they got there, and what will happen during the day. In good weather they go for a walk in Sokolniki, in the spring they made birdhouses and then hung them up. Everyone is very friendly with each other, they have excellent relationships with teachers,” say the parents.
“It’s very difficult for us with our grandson, he can’t communicate,” says Klavdiya Ivanovna, grandmother of 23-year-old Boris. “He studied at a special school, learned to read, but after he turned eighteen, we had absolutely nowhere to go. There was no talk of sending Borya to a boarding school. I accidentally found out about this center, we came to see what it was, and we were received very well. The grandson began to study in the pottery workshop, he is praised, he is satisfied, rejoices, he does better. He is autistic, it is difficult for him to communicate, but here he went on stage, reads poetry, speaks, communicates with children.
Everyone likes it, being among people. Our guys may be sick, but they are people, and they want to be just like everyone else. And here there is a teacher next to every child, the children feel the constant presence of adults nearby, their participation.”
Parents of those who come to Tourmaline say that taking private lessons is incredibly expensive, “no one can afford it.” And, in any case, the children will sit at home, and “here they have their own company, their own circle, they communicate, they are together, their shoulders are straightened.” “Here we pay pennies; those who can’t, don’t pay at all, although we ourselves understand that we stay afloat thanks to charity.”
Maria Slastenina, master of the ceramic workshop, says: “I have been working in the center for 5 years. I came to the center by accident. I love working here and don't want to leave. I feel like my life has changed a lot. Working with such children greatly changes your attitude towards life. They reveal all their facets to us, they have an unusual inner world, an amazingly sincere and pure attitude to life, to all the phenomena that happen around them. This affects every person very deeply. When you immerse yourself in their world, a lot of opportunities appear to remain optimistic in our strange world and perceive everything fresh. True love for life appears.
Recently they called me and said that a letter had arrived and that the premises had to be vacated on September 1st. We are shocked, we went to advanced training courses, we have a lot of plans, we came up with new methods of working with the guys. We missed you, they missed you. Yes, we were given a short delay so that we could urgently find premises, but we are confused and it plunges us into horror.”
Head of the Tourmaline center, therapeutic teacher and social therapist Rudolf Grigoryan: “We were officially registered on April 30, 2003. The idea of creating such a center was born earlier; methods unique to our country were developed. It was impossible to use these methods in government agencies, but the idea was in the air and the center was created. Until 2006, the Turmalin center had an agreement on the implementation of a social order and a lease agreement with the Alekseevskoye administration. Everything was in order until in 2007, the head of the council, Maria Antonovna Feneva, said that they could no longer conclude an agreement with the center, since the premises did not belong to the council.
We began to look for the owner of the premises in order to somehow continue our work, since already at that time we were included in the comprehensive rehabilitation program of the city of the Department of Social Protection, carried out the programs of the Public Relations Committee, were connected with other funds, we could not stop our activities.
It turned out that the premises did not belong to anyone, that is, they belonged to the city itself. There were many requests from the council and the prefecture to transfer this premises to the municipality, since they did not have enough premises. We were categorically against this decision because we were told more than once that the institution was implementing a social rehabilitation program, which was not included in the services provided by the municipality. The municipality solves the problems of leisure, health, social and educational activities, and our work is not included in this list. We were asked to work with the population of the district, to carry out leisure activities, but it seems to us that such proposals are similar to proposals to the municipality to bake pies. This is possible, of course, but the question arises about the quality of these pies, and about who will eat them, because although the municipality does not bake pies, the quality of its work leaves much to be desired.
We don’t want to bake pies or engage in social rehabilitation. We have highly qualified specialists, we delve deeply into the problem, we have music therapists in the center, psychologists, and speech pathologists, and we cannot change the direction of our work in order to be included in the municipality’s list. We talked about this at the prefecture, but nothing helped.
We are ready to pay preferential rent from the city, we are looking for premises at least on these terms, premises that would meet the tasks of the center engaged in the social rehabilitation of people with intellectual and mental disabilities (autism), but so far we have not been offered any alternative or help.
While the president talks about working with people with disabilities, about integration into the European community, when Vladimir Vladimirovich Putin says that now we need to take care of the parents of disabled children, so that they do not remain without work, they are the ones who are thrown out onto the street along with their children. We have several parents of disabled children employed, they work, they are socially active citizens.
Now we pay taxes, if the center closes, we will be left without work, go to the labor exchange and will burden the budget of our city. We ask you to preserve what you already have. We are not asking the Moscow government to pay us a salary, we are saying that we need premises in return for this. We ourselves will look for funds to pay the reduced rent.
We do everything ourselves, we are law-abiding citizens, but there is no opportunity to work, no one needs it. We are told that everyone knows about our work, the Moscow government has recognized our program as socially significant, we are included in the register of NGOs of the Moscow government, we have regalia, certificates from the Public Relations Committee, but there is no premises.
Accommodation of a disabled person in a boarding school costs the state 42 thousand a month; if you take your child home, he receives a pension. We save the state this money. We do not replace the work of government agencies, we do not duplicate it, but we offer an alternative to those who want their child to live at home, but at the same time be able to communicate with people and receive help from qualified specialists. Parents choose us by bringing their children here, they can work and be socially active. And now our parents are ready to take to the streets to picket.”
The center's employees do not ask anything from the state other than the possibility of preserving it. But citizens have every reason not to ask, but to demand. Demand that municipalities and the mayor's office not only not interfere with Tourmaline and those who want to go the same road, but help them, give grants for social work, from which the state and municipality have withdrawn themselves.