Lyubov Arkus: The main problem – not the state, and society

Lyubov Arkus: The main problem – not the state, and society

A few years ago the film expert and the director Lyubov Arkus has read the composition of 12-year-old boy autist Anton Kharitonov and has decided to shoot about it the film. That opened as the film project, has overturned destinies of many people, first of all – the Arcus. Thanks to Anton which destiny became «to one of key questions» to her life, the director has taken up the problems of autism in Russia. Recently it has opened the centre of creativity, training and social rehabilitation of autists «Anton here nearby». We have met Lyubov Arkus at a forum on autism which in November carried out Obnazhennye serdtsa fund.

– Lyubov Yurevna, what you think of today’s action?

– Already long ago, when I come on festivals, conferences, forums, at me such feeling that to me nothing to tell. And here it would be desirable to seize all and all everything to ask. Or to do any offers. The only thing about what I am sorry (it does not concern this forum, and concerns our life in general) that all are very separated and not too benevolent to each other. It seems to me, it is the main problem. Though I know that behind it there is a fatigue and years the saved-up disappointment. This malevolence has objective reasons. I cannot judge anybody at all because people have an extensive experience, and I have one Anton. And I only have begun. Actually, I only as am engaged year in fund.

– You have continued to be engaged in a disability subject after the film «Anton here nearby». Tell, please, about it. 

– Including (not only!) thanks to Anton my friend Dunya Smirnova has founded Vykhod fund. Until I will be live, the question of how there lives Anton, for me will be from key in my life. And I know that I am not eternal and [Anton’s] father is not eternal. And least I want, that when we will not be, it has gone to a boarding school. Therefore I want to create all structures which should not allow it. That is, as a matter of fact, at me parental motivation. And even when I would like to send everything to hell and to be engaged in the main profession, I understand that it is minute of fatigue, and it will pass, and since morning already I will think in a different way.

Lyubov Arkus: The main problem – not the state, and society

Frame from the movie «Anton here nearby»

– Many consider that the main problem for such children — this state.

– I too so thought earlier. But when began to plunge into all this life, I have precisely understood that the main problem is not the state, this society. Understand a difference? And in general I was convinced that the thought that society has that state which it deserves, is wise thought.

The state has no relation to that when we looked for rooms for the centre, residents of houses where we found them, objected to it. The state does not concern that when we wanted to rent in the house the apartment for supported accommodation, residents were against. When the next inclusive or integration class is organised, the first ill-wishers of this class are parents of healthy children.

When to mother at a playground speak: «Clean the freak», – at what here the state? Here this mother thinks of that, as at it such child could be born? Such children are born not at alcoholics, not at addicts — at any people, at random. The social and intellectual status has no value. Nobody is insured. That I have now told, is a narrow-minded level which should come to them mind. This the first.

The second. That fact that experts who reach tremendous successes everyone in the, they too cannot unite. In it too the state is guilty? It something in ourselves.

– In what your idea «a fandrayzing for all» consists?

I dream of creating a certain resource centre, to grow up experts who are able to describe models, to grow up fandrayzer for all. And that not everyone paid to this fandrayzer a salary of 500 thousand rubles, and that it there was a fandrayzing department for our children, that all together for it to chip in together together to look for money for that this department existed.« Let’s unite» are irrelevant things. Here we have united, and further that we do? And for example: here that workshops can agree among themselves that you do not open at yourselves a stolyarka, we open a stolyarka. But you open at yourselves dekoratorsky. Then we incorporate and we have a product. We will divide profit between our autists. We have general shops where we will take production from all workshops. At least it. Centrally materials account to look for, the same sponsors, the general sale, the general fandrayzersky department, the general resource centre which is engaged in educational programs and descriptions of models. Here we after all could make such things?

We do not do it. Moreover, when I speak about it, me do not hear. On this round table me have heard from the third time. And that partially. But I cannot reproach these people because they were tired. And I here the beginning person.

Lyubov Arkus: The main problem – not the state, and society

Lyubov Arkus and Anton Kharitonov open the centre «Anton here nearby»

– Of what they were tired?

From futility, from infinite fight for existence, from an infinite dokazyvaniye that we are necessary. From humility. Let’s say I now come to the donor. I say that here I have such centre for adult autists. He speaks: «And give you will create the centre for children? For children, give?» I speak: «And than adults differ from children?» «Well, children are the future. Here you say that it is possible to adapt, correct as though, there can be any talents. Let’s children lift, because here already you will make nothing». I do not say that all autists is children … But here this message that we will give rather to oncological children because there it is possible to cure. And yours can be cured? It is impossible to cure. Well then about what speech in general? It after all too not state. It is that fact that people have in general no representation that any human life is God this value. If you do not go to church, I am not sure that the Lord of it will not forgive. And here that you do not respect him trade, you do not respect him creations, here it here a much bigger sin. You have an idea that all is necessary to you, all is necessary to your children, and it is necessary nothing to these. You only clean them somewhat quicker. Inability to respect other creation human.

– Whether informing helps here? That does not suffice to mother at a playground to change the relation?

First of all there is no education. And, of course, it is very connected with that people have no information. Absence of information and absence of education. Outlooks, I would tell still.

How to build relationship with the state in principle it is clear. And here is how to work with people who refuse the organisation of integration classes, in the neighbourhood with social flats? But the drop sharpens a stone. I have made some tens publications in different places. And I saw that each publication changes something. A large number of letters from young people who about it did not hear anything comes. I do not say that Anton has made. I emphasise that Anton, instead of I. Because the huge, lion’s share of success of this film is a Anton. It is still very important to force to feel them. Only not to beat on pity and not to appeal to sense of guilt, namely to let to them know something.

– What you now plan to make in fund?

– I want to make to fund a site, multitask. There is a problem of a frayndrayzing through a site, certainly. There is a task simply to inform the Petersburg parents. For example:« Parents – three exclamation marks – on Dybenko 26 there was a stomatologist who is ready to accept autists». For example. And that there was such developed guide across Petersburg from the autistichesky point of view, it is simple on concrete rubrications: kindergartens, schools, doctors, experts, pools, art centres. That they knew, than they can use. And it should replenish constantly. Also it is time, and the second, there should be such multilayered information for parents: where to them to go that they need to know, when they have received the diagnosis that it should read first of all where they can call. It is one history. And the second history is such «an exhibition of achievements of a national economy». I sincerely consider that all positive that is in the country, should be described, photographed, shot with the chamber and is accurately designated. Also should be our country with red tags: Vladimir, Tula, Ryazan, Barnaul. That here is, and here anything is not present. In Khanty-Mansiysk anything is not present. In the Yamal-Nenets district anything is not present. And there is a lot of autists. And there in general anything is not present. Even when I go to the donor, I do not want to speak to it: «We in the country do not have anything. Everything is very bad. Autists literally die». And I want to tell to it: «Dear Petja! Look, how many all is! But it covers only 20 % or 10 % of autists. In your will that there were 50 % of autists!»

I want to give only checked information. Also I do not want to inform parents on existence of such neurologic centres where, autists treat any bioadditives. Because it is a profit on another’s trouble, this squeezing of money. And I want not to advertise, and to inform on those services which enter, conditionally speaking, in Evidence-based practice. That is that is proved. Let’s say ABA has proved the efficiency. About everything where there is AVA, I inform. Art therapy has proved the value – and I will tell, where it is. And to inform parents on a place where they can take off the last pants and to receive nothing for it, I do not want. Let these organisations are engaged in the advertising. Moreover, if I, let us assume, learn that five children have passed any courses on hundred thousand rubles everyone and it has not given nothing to them, I will write about it article. That parents knew about it and did not bear there the last.

One more problem that people with frustration of an autichesky range – very different. There is Anton whom nothing intellectual backwardness can do without support and at which. Also there is, for example, boy Vasya with Asperger’s syndrome. Vasya has graduated from the university, psychology faculty. Vasya do not take even to wash for work the car, he is at home with the diploma. Now I take it in the centre. I about Vasya think: what will Vasya do? He will be engaged in scrappy sewing? Silly. He will be engaged in a fulling? Silly. Means for Vasya, for example, I have a printing workshop. It after all good work even for the person without any diagnosis. But in principle, I, of course, need to get any computer classes, let us assume, that children could take any orders.

It is possible to organise club of employers, to hand over them awards. There is a club, people who take for work of autists there enter. And we issue them gold maps, we hand over every year a prize to the best employer. We hold for them any seminars with departure. And it here about what you speak. How it is possible to change society? And here so.

 

– That is, stirs unavailability of people even to the minimum discomfort?

– Yes. I tell it in all interviews: idea of total comfort it that as the cancer tumour devours human souls. Why the person has decided, what always and everywhere it should be convenient to it? Also that all should be directed on that it was convenient to it? It at all levels. The convenient pillow, the convenient car, it is convenient to reach work, it is convenient on work. And in this idea of comfort which becomes total, it is entered that «and it is not convenient to me that my employee sets 50 questions. I want the employee who will never set to me questions».

You were born flawless, and the person was born with defect. If you are the member of civil society, you mean should offer any part of the comfort.

– But it turns out, if it employs the autist, for example, it not only will not praise, but probably even will not understand?

– Over it just also it is necessary to work. The person who is not ready to take to itself the employee with features only because it becomes less convenient to it, this is the sincere disabled person. Sincere disabled person. Then for these disabled people it is necessary to create the ramps, any adaptations in order that their disability somehow decreased. Therefore we make different movements that such employers for the slightest steps towards socially to thank, increase their self-image. I and before Anton’s appearance had good edition, but Anton as though in a magic way has worked on all.

– Whether there was any reaction of Church to your film?

– In principle not. And me it is very sick from it. After all idea of careful attitude to special people – in Russian tradition, in tradition of Orthodoxy. When in the village such person was born, it called the little fool. Not disabled person, and little fool. But all community fed him, was considered to offend for a sin it. There was any place in a community for it. It grazed cows, for example. In any house for it always there was a food. The foolish – that such? Blissful – that such? Guilty was considered not to take care, offend or humiliate it. Now this primordial national tradition, it is absolutely trampled. It never the good comes to an end.

In Petersburg there is father Alexey, he is engaged in autists, long ago is engaged. At Chesmensky church there is a club for autists «Pleasure space», there volunteers drive round dances, draw with them, dance. I do not consider that it cardinally changes life of the autist, but by my experience with Anton is very important thing because I, for example, knew that on Friday evening I can does not care of with what it is occupied. I can take it by the hand and there take away. And in order that mother of the adult autist felt though somehow decently in order that she could sigh and be engaged in the life, it is necessary that such places – both working, and leisure, was much. That she could choose: that is closer to the house that corresponds to the child more. The main problem with the autist that he is at home, and social not activity, an unemployment and isolation — it that leads to psychoses and disturbing conditions. The autist who is occupied, has no psychoses and it is not necessary for it drugs. Autism is not an illness, this condition. It simple other people. Therefore I hate, when them call patients when say that it can be treated, it is impossible to treat. A word to treat does not approach. They should not be treated, they are in own way fine. And very often it is much better, than we. They, in effect, if to take absolutely primitive level, in relation to us a little bit aliens. They have in a different way arranged brains, they have in a different way arranged any contacts to the world. They not patients, they simply others. By patients they are done by us when we do not provide them possibility which we have.

And we isolate them also invalidiziruy it. And then people in white dressing gowns with the syringes come and start to thrust them in a bottom a haloperidol. I it call murder. I do not idealise autists. They happen different. Happen malicious, happen kind, happen clever, happen silly, happen greedy, happen generous. They different, as well as we. This our any world behind the looking-glass.

I had somehow a meeting with psychiatrists, and they began to shout at me that who you are such, you have no education why you know that it so, instead of so. And in general, you know about what number of parents we rescue, when our drugs calm them and they cease to bite themselves and parents breathe sigh of relief? I speak: «And you know, what occurs after you have pinned the these drugs, when the child comes back home? You know, what to it occurs?» «But you understand, what these people are dangerous in the conditions?» I speak: «Just a moment! It is neurotypical people, that is we, are dangerous. It is proved by all human history. And they did not bomb Hiroshima. Did not arrange Holocausts, did not arrange genocides, they did not arrange red terror! They are not capable to violence. It we are dangerous. Including we are dangerous to them. And they for us are not present».

Probably, it too question of comfort and education of our psychiatrists?

– Among psychiatrists too there are very good people. So, our Anton has very good doctor who is very necessary to us. Unfortunately, after eight years bombed Anton neuroleptics and aminazine, it was impossible to cancel drugs absolutely. But our Leonid Yakovlevich Libin watches that these drugs there was a minimum. It very much аккуратненько, literally in millimetres corrects it. He respects Anton and he is the good doctor. In Petersburg there is a psychiatrist, the professor, Vladimir Eduardovich Pashkovsky, it is perfectly educated and is very thin understands autism problems. In Moscow there is magnificent young doctor Elisey Osin, at it the huge future when me ask to whom to address, I always call it – he will begin to hate me, probably soon …

The most terrible when I am called by parents and ask, where to them to go now. And there is no place to go. That is I can tell that in such place with your child will dance, in such place will take for a drive on a horse. In such place will be engaged in art therapy. But to find it the person who will make the correct diagnosis or will correctly put the rehabilitation program … Such people – two-three … Our task – that such people have appeared. Therefore we now will spend a lion’s part of the budget for education.

– What exists at us in the country for adult autists, except your workshops?

– Month through two – through three I can give you the exact answer. While we on particles collect such information.

Still I want to tell that now it is especially critical situation, because the world in principle very autizirovanny. And children because of an aggressive information and vizulny component – I mean computer games, computers and gadgets. Here all this аутизирует is terrible space. I always come on Birthday of any child and I see the same picture: children everyone in the айпэде sit. Therefore in general now with children very big problem. In my opinion, healthy children in general practically are not present, children all closed.

How your film and everything, what was farther, is reflected in your professional activity?

Well, a little bit I go mad. Because in fund I, of course, do not earn, but only I spend. And at me a family, seriously ill mother. I have no right to earn less certain sum. Therefore I have simply ceased to sleep practically, I something am not in time all the time at all. I very much love the profession, I cannot recede from it for various reasons at all. First, because I love it, and consequently that is my life, all previous. Secondly, because I have pupils who depend on me. And I cannot throw them for various reasons. And me something would be desirable to tell besides autism and I do not want to refuse to myself it therefore it is necessary to live not one life, and two, here so I will tell.

I here, for example, was engaged for the first time now in the health, the truth it is a little appreciable, because forces it is all the same necessary three times more.

P.S.:

Anton Kharitonov’s text "People"

«People happen kind, cheerful, sad, kind, good, grateful, big people, small. Walk, run, jump, speak, look, listen. Fun-loving, bar. Red. Short. Women happen kind, speaking, light, fur, hot, beautiful, ice, small. There are still people without moustaches. People happen sedentary, standing, hot, warm, cold, real, iron. People go home. People go to shop. People play a piano. People play the piano. People play an accordion. People go on Plekhanov. People stand near the house. People suffer. People drink water, tea. People drink coffee. People drink compote. Drink milk, drink a berry juice, drink kefir. Tea leaves. Drink still kvass, lemonade, sprite, to a forfeit. Eat jam, sour cream. People think, are silent. Sick and healthy. Become water carriers, water carriers. People in the ship, in the plane, in the bus, in an electric train, in a train, in a tram, in the machine, in the helicopter, in the crane, in the combine. People live in lodges, in a room, in kitchen, in the flat, in the battery, in a corridor, in a bath, in soul, in a bath. People leave, leave, run, people still go for a drive, float, bathe, eat, eat, die, remove socks. People listen to radio. People do not suffer. People eat. Speak. People лохматятся. Писают, crap. People change clothes. Read. Look. Freeze. Bathe. Buy. Are heated. Shoot. Kill. Consider, solve. Include, switch off. People at theatre. Go for a drive on a sledge. Worry. Smoke. Cry, laugh. Call. Normal, mountain, naughty. People hurry. Swear. Cheerful. Serious. People drum and rumble. Not лохматятся. Are lost. Red. Deep. People skin. People repair a lodge, a shed. People will suffer. People draw, write. Wood. People chop firewood, saw, heat. People still greet, speak, jump, run. People final. People fly».

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