deep inside
The Art-documentary project Deep Inside is about people with multiple severe developmental disabilities. Most of the participants of the project can neither speak nor leave the asylum. Our aim is to shine a light on this world and make it visible, because it exists and it is near.
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People living inside closed asylums are almost invisible as most of these institutions are situated outside of the city. We don`t see these people out on the streets, we know nothing about their life.
There are 504 closed psychoneurological institutions in Russia with around 150 thousand people living there. The asylum in Peterhof is one of the largest in Russia, and it accommodates 1030 people. The charitable organization Perspektivy curates 148 people with different types of disabilities that live there. This project is about them.
The main goal of the nonprofit charitable organization Perspektivy is to create living conditions for these special people that would most closely resemble those of regular people.
Perspektivy has been helping children and adults with multiple severe developmental disabilities that live in closed institutions and in families of St. Petersburg since 1996. The employees of Perspektivy work alongside the regular staff in asylums, being close to the people they look after every single day.
Today Perspektivy curates 91 children with severe disabilities living in the orphanage for disabled children №4 in Pavlovsk, 148 adults in the psychoneurological asylum №3 in Peterhof and 160 families in St. Petersburg that look after special children at home.
You arrive to Old Peterhof. Get out of the bus or leave the train station, and see an empty and still pavement. From time to time an emergency ambulance, lorry or a person in a wheelchair goes by. Here you can start to see the forest appear. You pass the trees, while their trunks blend into each other in the deep forest. You can feel the smell of the air, and suddenly hear the silence. If you walk this way for about 20 minutes, you will reach the huge white building of the asylum. People living there rarely go out, and most of them are unable to even walk in the forest.
The line of the forest. The line of the road.
The corridor split into two by the line.
On one side of the line there is us, on the other – also us.
If you take a closer look there is no line, but only a wall.
The wall behind which people live.
There, deep inside.
You go up the stairs, open the door and find yourself inside the 3rd unit. It was opened for people with the most severe developmental disabilities. It is quite noisy there – the entire life happens in one long and finite space of the corridor, that’s why constant motion is happening. Apart from the employees of the asylum and the people who live there, you can see volunteers walking down the corridor, as they enter rooms and often just sit on the bed by the side of the residents holding their hand and embracing them. Just before lunch is the most lively time there– everyone gathers and gets ready in advance – you need to arrange the chairs, bring those who cannot come by themselves, wake up those who are asleep. At this hour, it feels as if the number of employees expands greatly: the stronger ones help those who cannot move, put on clothes, go to the toilet or eat by themselves. No one teaches them to do it, it happens naturally – for example, Ksusha always feeds Vika, who cannot hold her head by herself, and she often doesn`t have time to eat, but nevertheless both of them look very happy.
Time is day that people live. We wake up at 7. At 7 I wake up.
My alarm clock goes off. Ring. I wake up. Put the kettle on.
I feed breakfast those who can’t eat themselves it is very difficult at breakfast by the way. All the time. But I
will be doing it always. I even move plates. And I am saying like eat.
And I am like silent. And I lower their head. Hup I noticed that she is not eating. But you know this also.

Breakfast is at 9 we are given breakfast. We eat gruel with cheese and tea for breakfast.
Sandwiches we eat. With butter. With tea.
Breakfast finishes everyone goes to the classes each his way. Someone goes to physical therapy
I go to ceramics classes. Today my day was for ceramics. Because ceramics teacher went today
to meeting. Today my day I was free. On Friday I will go to do handicraft.
Because Roma is on holidays. I am free. I can have rest.

I work at computer too. I make newspapers too. I like to
work at computer the computerman is on holidays now.
I am present everywhere where I like it and where I go and meet everyone
where they tell me I go. I am a very interesting person that will meet every day.
For example, with you.

I draw always small audio. Which I could every day could create at
yours. Because I am very shy and audio is created beautifully. And I
like it. Even in winter summer spring. Audio is like that I can tell about my drawings
that I draw snowman. I draw I already drew a tree second tree with apples.
I drew.
Then at half past twelve we go to second breakfast. At 12 daytime we go to second breakfast and then
to lunch. In an hour.

The tenth unit was opened much later than the third. There is a door
between them. When you leave the tenth and enter the third unit,
right by the door you are greeted by one of the guys, normally Kostya,
who takes you by the hand and leads you everywhere and shows you everything,
as if you came to someone`s home.
So there we`ve had lunch.
My classes finish again. Our day passes very quickly.
Because everyone is at classes.

I make a painting work on ceramics. Now we are making soap box for exhibition.
We will make for Easter.
I go to dinner. And after dinner I watch TV. In the evening I rest drink tea. Evening
dinner it is called for me.

After there I had tea now I sleep till morning and that is it breakfast again. Then second
breakfast. Then again snacks and again. Time goes and goes and goes.
I very have dreams. How I see in dream how one man came. Cup of tea
put I cup of tea drank. Hot. Then fell sleep again. I had a very dream.
I had a dream of Perspektivy . How they took me to camp.

I dream of workers volunteers workers all they I dream of. I sleep with it. I communicate.
I wake up and my head spin. I perceive like this very good.

Dreams can be big and interesting can be funny at all. Dreams. Can be serious
dreams. During lately I had such dream. So impressionable dream. Which I
wouldn`t want to open.
Life is when someone lives long till end of their life. Life is good thing. I
smile I am joyful now summer will be. To street I go. Such is my life.

03.Recreation room
When you leave, you might feel that you can barely move your arm because it aches so badly due to so many people gripping it with inhuman strength. It is gripped this way because they want your arm to become their arm. They grip it because they want to. How often do you hold someone’s hand? It could be every morning or several times a day. Why do you feel this need? To overcome the longing for much needed closeness, to share what is yours, to feel compassion, warmth and response. We also want love. If we think about it, what truly important things happen to us? We feel the emotions of being happy, sad, worried, shy, jealous, concerned, we want to drink or sleep, we dream. And we try to express this. Everyone tries to express themselves in their own special way. We express it as best as we can.
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We are afraid of the pain, and we try not to see or feel it. Most of us have a phobia of our feelings. But when we allow ourselves to feel the pain and the joy, we see that there is something behind the pain too. I actually think that all of us are disabled, it is just with some it is more visible than with others.
Margarete Von Der Borh,
Founder of «Perspektivy»
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It is enough to have an interest in the personality of the individual, openness towards those who are different from you, absolute respect for the individual. Not because of their achievements, or skills and abilities, not because of their talent and beauty, but just because they are human.
Masha Ostrovskaya,
President of «Perspektivy»
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I don’t know what awaits me in the future, but I know for sure that I want to have kids. No one can say that you won`t have a special child like these children. That’s why I wanted to have this experience in my life.
Yari Gonzalez,
Volunteer for Perspektivy «Perspektivy»
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People like this are those who usually make important social changes, because they evoke compassion. But at the same time, they make us question ourselves: Am I alright? What am I doing? They send us back to the normal human notions of life, love, death.
Lena Shiffers,
Head of the Art program of «Perspektivy»
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You realize that they begin to wait for you. Your presence and your smile, as one of the girls says, «Shines you in the eye». And, I understand that my smile is the most important thing I can give people.
Andrey and Elena Babiny,
Sponsors of «Perspektivy»
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I need a purpose to live. And charity has more meaning in it than any other activity. It helps me not to be afraid. Also, it gives me understanding and it enriches us – people with disabilities give us the gift of the possibility to take care of them. And I cannot refuse to accept this gift
Dmitry Chudinov,
Sponsor of «Perspektivy»
You get out of the asylum, and again find yourself on the road. All around you is forest. When you leave, the road seems different, as if it became longer. Although usually it is the other way around – the road back seems shorter. Perhaps everything slows down – time flows in the asylum and in the city at a different pace. Here, on this road, appears a clearing in the forest, where you can stop. Layers of thought change places, and your thinking starts to proceed in a different sequence: about something uncertain and fleeting – about meaning, patience, truthfulness, death, normality, being needed, about yourself. You want to walk even slower, in order to remember this slow pace, to understand it and keep it inside.

The line of the forest.
The line of the road.
The corridor split in two by the line.
On one side of the line there is us, on the other – also us.
But all of us are only humans.
Somewhere, deep inside.
How to help
Dmitry Chudinov,
Sponsor of «Perspektivy»
Looking for a purpose
How does one overcome the fear of the subject of disability?
There has been interesting research conducted – for example, people don`t have an innate fear of snakes and spiders, but according to the survey, closer to teenage years, girls’ fear of snakes and spiders is greater than their fear of death, even if they have never had any direct contact with them. Where does it come from? I think its origin is in human history. During the XIX–XX centuries in Russia, there was a transmission of “Spartan” culture – in Sparta, disabled children were fed to the crocodiles. One of my friends, a woman with several higher educational diplomas, says that she was brought up with the idea that war clears society of the weak, a kind of natural selection. Society becomes stronger and reproduces better. All of us grew up with this Soviet inheritance. It was my mother who cultivated in me the of love of people, art, sacrifice, the need to do charity work and look for a purpose in life.

All people have fears in childhood, but then they are forgotten and people think that their childhood was a “golden” time. I don`t think that childhood is a “golden” time at all, as children have more fears than adults, it is just a peculiarity of memory that we remember only the good. I have never collected bad things, but I needed to have a reason to live.

You know, like Viktor Frankl, the psychologist who was in a concentration camp during WWII. In order not to lose his mind, he started doing research – what kind of people survive in the concentration camp: strong or weak, cowards or brave, fat or thin, men or women, old or young? It turned out that all this does not matter. Those who survive are the people with a purpose.

It is the same for me. I need a purpose to live. And harity has more meaning in it than any other activity. It helps me not to be afraid. Also, it gives me understanding and it enriches us – people with disabilities give us the gift of the possibility to take care of them. And I cannot refuse to accept this gift.

People should know more about disabled people, realize that these people are not dangerous, and that when you are around the weak, you do not become weak, you become even stronger. When we protect the weak, our strength grows.

How to get people involved in charity?
We must not ask, but tell people about it. It is important to tell them that there are people like this, that there are certain difficulties and openly say what those difficulties are. It does work. We need to translate the thought that through this help you will feel joy and a sense of purpose. Some are taught in childhood that it is important to help others, and some not.

Of course, you need to help according to your ability. Not to “break” yourself, otherwise the “fear” of help occurs – you helped the disabled, but died yourself. When my friend was dying of cancer, I didn’t know how to help him. I was really grieving and started to “die” myself out of compassion. Then one psychologist said to me – bring him strength, don’t bring him weakness, he is weak enough. And I stopped “dying”. Here it`s the same, you need to be strong and help according to your real abilities.

And if the person is rich, he must help even more so. All we have: money, talent, strong will power, all these are not ours but come from outside – some think it comes from parents, some from God.

I think that egocentric people are people who are sad all the time. They are so lost. They think that if they stuff their pockets with money, they will get somewhere – one hundred dollars now, tomorrow it will be a thousand, then a million – and then happiness will come. They have never been told that happiness doesn’t come with money, but on the contrary – it goes away, and anxiety comes, because then you need to preserve this money, which is a new problem.

That’s why a lot of people who have money are not free and quite neurotic. People who feel that they don`t have enough money often think, “I don`t have enough money and I am sick, because I don`t have enough money women don`t like me, because I don`t have enough money I have no children, because I don`t have enough money and can barely feed myself, how can I feed a child?” You will be able to feed them! There are practically no children in Russia that die of hunger, very few anyway, and certainly not in St. Petersburg or Moscow. Give birth, don`t be afraid.

How can we make society more open to people with disabilities?
Humankind had never lived in an atheistic society until the XIX century. The notion of materialism appeared in the end of the XVIII century. Until then, materialistic ideas never occurred to people, humankind always lived with Gods. With materialism came an additional idea of humanism. If there is no God, and we are born out of earth, and go into the earth, then the idea of humanism must be imposed – to love Man, at least, if we don`t love God who has created us. We need to create new cultural traditions with the help of religion or ideas of humanism.

How can we make society more tolerant?
There should be transparency, both financial and political. There should be honesty in every aspect - you should be truthful to yourself and others. To be truthful doesn't mean to look for a way out of hopeless situations. To be truthful means not to compromise your values: not to betray, not to insult, not to demean, not to kill, but to look for truth, even if it might offend someone. When you are transparent and honest, then both society and higher forces help you.

People must not be persecuted for thoughts, people must not be persecuted for beliefs. You can’t arrest people for their ideas, you can for illegal actions, but not for their ideas, whatever they are. There are boundaries that must be distinguished and respected. Society must agree on some boundaries - until here it is ok, and no further. Sometimes these boundaries are not distinct, sometimes they are misinterpreted but society must come to an agreement on them and adhere to them. There are people that fall into emotions and rage. Activists: those who are fighting for LGBT, and against LGBT. Who is fighting with whom? I don`t get it.

It is like Brodsky wrote, “You know, a famous person came from the US, and someone said let us introduce you to each other? – I don`t like communists. – you didn't get it, he is a dissident. – What is the difference?” Whatever you are fighting for, when you are fighting all guns blazing, when there is no difference between what exactly the fight is about, it means that you are not thinking straight. That’s why I believe, like Grebenshchikov sings, “This earth was ours, until we got stuck in the fight” – once we go to war, we get stuck in the fight, the earth ceases to be ours, children cease to be children.

To be on this side of the barricades or the other side of the barricades – there is no barricades, the barricades are in our heads.

Why do people start to fight each other?
Because society has cultivated it. They were not told in childhood that it is beneficial to be kind. The French philosopher and mathematician, Blaise Pascal failed to scientifically prove the existence of God. And it is fortunate that he failed, because if it were possible to prove the presence of God, it would be impossible to believe in God. Like with the wall – it is impossible not to believe in the wall. If you don`t believe in the wall, you walk and you smash your forehead, and God gives us freedom.

When there is a conflict due to a difference of cultures, beliefs, values, we need to figure it out, get to the core of the conflict. If we are talking about an extreme level of intolerance – about war, I think it is a form of neurosis. And neurosis is usually cured by the power of the mind. The person either analyses their life themselves and finds the cause of the neurosis or does it with the help of a psychotherapist. When you realize where the neurosis came from, it disappears, you are cured. If people, both faithful and not, with the power of their mind and spirit, sort out this neurosis of war, they will get to the core of it and understand that there is no sense in war, that behind war is often the manipulation of collective consciousness. However, we need to come to this realization unforced, not everyone comes to it though.

Why is integration into society necessary for special people?
We need it ourselves in the first place. A person grows intellectually and spiritually while helping the weak. My eldest son, for instance, has worked with disabled people at summer camp, and I hope that the younger son will also work there too. And, if a person lives only for themselves, they will grow into a monster and a thoughtless egoist.

Working with special people gives you a spiritual depth that you can`t find practically anywhere else. And, it brings so much joy and happiness. Those who have felt it understand what I mean. And if the person has never experienced joy in helping others, we need to help them to experience it.

We must realize that all this Soviet sociocultural heritage cultivated the fear of disabled people in us. We need to understand that mental and physical disabilities are not contagious. When we were trying to integrate special kids into regular schools, there were mothers at the parent’s meetings who were saying – we don`t want the disabled kids to be in the classes, we are afraid that our kids will get traumatized because of it.

People that are against inclusion just can`t understand some things that were not taught to them. It is like languages – you can learn to speak a new language in a month, when you are five, but when you are 15-20, it will take you half a year. We need to nurture in children the importance of helping others, but not force it onto them, rather share this joy with them. This is really educationally valuable.

Inclusion should be encouraged through changes in culture: through getting people closer to moral and spiritual values. If there is no God, then through humanity.

You shouldn't be afraid to jump across the edge of the cliff – no one will carry you. Make a little step towards people, people will open up. Society treats people who break the law with aggression – prisons breed criminals. Children’s asylums develop disabilities – a person comes with a little disability and then it gets worse. A person makes a wrong decision once, gets put into jail and there he becomes a criminal for the rest of his life. He just got lost in the beginning and no one helped him. Society guards us from those who are different from the majority, those who seem dangerous to them. These fears must be conquered. Make steps toward people and they will open up too. Kindness nurtures kindness. And I believe that through kindness and depth, we realize what love is. Love in the higher meaning, not towards a potato. Sorry for the pompous conclusion.