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
Lena Shiffers,
Head of the Art program
of «Perspektivy»
People that change the world
What is the art program?
It all started when we organized a theater studio in 2000, after a while we opened an art studio and music classes. Later we just combined them into an art program.

First we had the ideas, then we found the money and people, who were ready to realize these ideas. All of our studios are unique, and were specially created by someone.

People pick what interests them, which studio to choose. People in the nursing home don`t have a lot of opportunities, that is why they are highly-motivated to create art and spend a lot of energy to change themselves. It is incredible. I don`t see such qualities in usual people. A usual person thinks for a long time about whether to change something in life, if they need to change themselves. And art itself requires the changes in a person. That is why there are so many creative and talented people who are open to change here.

We don`t do art therapy – in the environment of an asylum, where a lot of people live, there is no possibility to do it. In our studios, we use the benefits of art as a support. But art itself is therapeutic, the most important thing is for the message of the art piece to reach the viewer. The signals that people living in the nursing home transmit are very powerful. When taking in those signals, watching them, working with them as with equal partners, backward communication occurs. And then there is the question – Maybe everything is vice versa? Maybe it is therapy for us?

Why is the language of art so important here in the nursing home?
People are looking for self-realization because they want to communicate with other people, with the world, they want to tell about themselves. Here every person has a very strong position of who they are, and the language of art allows everyone to express their voice. For example, those whose ability to speak is not developed, or they can`t speak very well, can get information across by other means. Our job is to make sure their message reaches people. To organize exhibitions or a theater project that would have recognition, would be acknowledged.

The possibility to speak about yourself by means of art helps them to become more open, calm, secure, they can cope with a lot of difficulties more easily.

The expression that art is beyond all boundaries ceases to be a metaphor here, in the nursing home. It literally goes beyond all the boundaries – we have exhibitions and theater performances not only in St. Petersburg, but also in Europe. And, together with our guys, we overcome all the internal barriers. We are all equals. When you overcome yet another fear, it becomes easier for you to live, you go to another level. We overcome this total isolation that they were initially condemned to. But nothing would happen here if they didn`t have such brilliant talent and if their art pieces weren`t so powerful. They are amazingly talented people with a very strong and bright message to send.

How does art change the life of the people in the nursing home?
Those who live in the nursing home are often sad and often ask themselves very dramatic questions.

Art helps people to live through some moments, to rethink something. Taking part in a theater piece you do not play the part, you live through it, and it stops being so traumatic to you. It is like you share the experience with the character. It was very interesting when we were working on the Hamlet theme with Elgar – he chose it himself, it was the most crucial topic for him. Elgar can`t read, he learnt the monologue “To be or not to be” by ear and I was reading it to him. He told me in the very beginning that it is a monologue about suicide. But we worked with the character this way: Prince Hamlet is your consultant, he chose death, but you can make another decision and rewrite the play in your own manner. Elgar has changed the plot and changed his life in that moment. In this sense art has absolutely wide possibilities.

For us it is very important to find a subject that person is ready to live through. It is important to understand what really is relevant for them, to see which signals they give you to understand what they need. We work in different ways with different people – for those who don`t speak, we will find the possibility to express themselves with plasticity, with postures, gestures, with music – there are a lot of options. The same with painting. Here you can also live through something, but only on paper.

Why is feeling sad not a bad thing?
«My melancholy's light…». I believe that genuine emotions can`t be bad for you. The person still lives through it. These are the real emotions of a person, not artificial. And all our emotions and reactions evolve and change all the time. Today you think and feel one way, and the next day you wake up and realize that you feel absolutely differently about the things you experienced and thought about yesterday.

But here in the nursing home I have never felt hopelessness. People here live with “faith” and they convey it. For example, you come in a bad mood, and everyone would always ask you, “what happened?”, and then would say, “you know, everything is going to be ok”. Where does it come from? I don`t know. The priest in the church here says that it is probably due to their proximity to God..

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. Do we think about it throughout life? No. We are always busy with something, always running, building a career, we are moving too fast.

How can we accept the idea that the life of these special people is also life – just different?
We must show the life of these people. If we are talking about an art program, our mlain goal is to keep it genuine. When we work on a theater play, we keep the people as they are, and we build the story around them. The same in the art studio, we don`t teach these people the techniques of drawing, we don`t correct their works or add anything. We work very slowly. The minimum time we spend creating a play is a year, as we want it to be meaningful.

Do these people have a reason for living?
I was asked why do you prolong the suffering? The person is suffering and you prolong it, why? But, if you ask them, they will show you that they want to live their life even though they are suffering. They live their lives. And they do it great! Their will to live is much stronger than that of a usual person. Give them the possibility to live as they want to.

Although the value of human life is proclaimed in our society, it doesn`t exist in reality. And special people help us to realize the value of our own life. They demonstrate to us how they overcome difficulties, what effort it takes for them to live through a single day. It is their socio-cultural role in society. It might be a consumer idea, but it is worth being consumed! We need to integrate these people into society, not because we are so noble and good, but because we ourselves need it the most.

What helps you keep up your energy while working in the nursing home?
Sport helps me greatly. I really like to walk, if I walk 8 kilometers a day, I feel good. Moreover, I feed on ideas. I have been working here for 17 years already. Every time I think that I have already done everything that is possible, what else can I do? But then the next idea pops up – a new play, project or something else. The most important thing is to keep the open-ended idea, not to lose what we have already accumulated.

What does working in the nursing home teach you?
You need to be flexible here. You need to remember your goals and objectives, but if plans change you need to move on and not worry. There are a lot of things in the nursing home that might change for whatever reason.

Special people also can change in half an hour. And you need to understand how to deal with it. Not only to make things convenient for you. We follow them, preferably two steps behind. It is very efficient - they show us a lot of interesting things. Absolutely unexpected things happen all the time. It is important to shape work into something that should be flexible as well.

This is a very useful experience, as we have a lot of things happening that we don`t expect. And this experience helps us to accept everything that comes, regardless of our desires and expectations. This way you keep going towards your goal, but with a lot of interesting things happening on the way.