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
Masha Ostrovskaya,
President of «Perspektivy»
Respect for the individual
How to understand what disabled people feel?
When you see someone from a distance who is different from you, you make a lot of incorrect assumptions. What is important is our own personal sensitivity. Sometimes you need to stop and slow down to perceive small signals – the feelings of the people who don`t express themselves in the usual way. Sometimes we lack this sensitivity. It might seem that the person doesn't express themselves, so therefore they don`t feel anything, although it would be more correct to say to yourself, “I don`t understand their signals, so I don`t understand them”.

Do you need to have some particular qualities to understand and communicate with disabled people?
Personally, I think that 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.

The best volunteers we have had were those who in the beginning were fainting and bursting into tears. Yes, sensitive people who both care a lot and are afraid a lot. But if the person stays after that, they very quickly stop seeing the disabilities of the person. All the disabilities become like a frame for a painting – if you like the painting, you won`t even remember what the frame looked like.

How to deal with the feeling of hopelessness about nature?
Feelings of hopelessness appear when you set a goal for yourself that cannot be achieved. We cannot make the disabled become ordinary people and completely free them from suffering, and it is important to realize that.

In general, any fear that appears during communication with disabled people is natural. You don`t need to fight these feelings. It is a question of contact duration. Fear is the first reaction, after it comes the second, the third. Provided that you stay, and don't run away.

How can you help the people who live in the asylum?
You can start to communicate with some of them. You can just spend time together, play, invite them to visit you or go somewhere together. The most important thing is that it should be interesting for both of you. For some, it is enough to go for a walk, or to the shops, for others – to the Hermitage. You shouldn’t think, “What will they be able to understand there?” The feeling of excitement from seeing beauty comes naturally, and not through some special cultural and intellectual channels. All people have these abilities and these people are not an exception.

If personal contact is not possible for various reasons, there are different options for financial help: you can support the work of some of the volunteers or employees of the organization, buy orthopedic shoes or a wheelchair that is suitable for a certain person instead of just anybody – which would help to lessen the pain from spinal curvature. Also, we have a big project that needs financial support – a house for assisted living, where these people will be learning to live independently. For now, we have rented a house in the village of Razdolye, as an alternative to the big psycho-neurological asylums, and started to build our own house. We need help to continue this building work.

How can you make the life of a grown-up disabled person better?
Generally, we consider it a social norm that a grown-up person leaves their parent’s home. And in this particular situation, it is better for a grown-up person to be among the people of their age or in the family they have created themselves. There are people for whom it is possible to start a family and have children, and those who, for different reasons, cannot.

But not all communities are equally good. I would say that they do not live in the community here in the psycho-neurological asylum, but in some crowd, where they don`t decide anything for themselves. Usually, we choose our own friends and people we want to be around. But they don`t. In the asylum, they live in one room with six other people who they didn't chose, in conditions where they have no personal space – they can`t ever be on their own, not even in the toilet. Those who have the experience of living in the communal flat, can perfectly understand how it is to live in a community you didn't choose.

Normal conditions are when we can choose who to be around, whether to be in the company of people or on our own. At the moment, people living in the asylum don`t have these options.

Is there an alternative to living in the asylum?
As an alternative to huge psycho-neurological asylums, we have opened the House of Assisted Living in the village of Razdolye.

The normal alternative to the asylum is a group of people who like living together as a kind of family or community. There are a maximum of eight people. They should be able to choose for themselves where to put things, what to hang on the wall, what to wear, what to cook, when to be on their own, where to go and with whom, what to do, to go to work on their own and come back home in the evening.

Here people are included in the everyday household processes and they live around regular people, in a regular home. They communicate with local people, go to the banya, to the shop, use public transport. The most important thing is that it is an open system. They also choose who they are going to live with by agreeing with the other people in the community. Moreover, they work in the churches. We hope that soon we will have workshops outside the house too. This is what normal grown-up life is. More or less normal. Of course, some would prefer to live on their own or just the two of them together, but for most of the people, who are under our care, it is impossible as they need 24 hour assistance.

We invited people to Razdolye who would like to try it. First, we had 15 people, we thought would live there for 2 months and then decide if they want to stay. As a result, one completely refused to leave the asylum. Some stayed for 2 weeks and came back to the asylum. It is quite difficult to live by yourself as there are a lot of things that you need to do. There were also people who were not ready to part with the friends they had in the asylum. For some, the fact that there was no TV was critical. Not everyone is ready to make the serious effort to be free, to have human dignity and choice. People are different. Out of 15 people, only 7 have stayed, the others chose to go back to the asylum.

How does the work of the volunteers and the specialists change the life of the disabled people?
There are a lot of examples. For example, one of the guys was constantly thinking about suicide. Now he is involved in a lot of artistic activities. He has decided for himself that life is worth living.

There is also a girl that can only express herself by the means of signing “yes” or “no”, she is really restricted in her movements, and is in a wheelchair. When she first appeared in the nursing home, she wasn't doing anything, but just sitting there. Now she is painting, has a better sense of direction, you can talk to her about different things only by getting the signals “yes” or “no” from her in an answer to the questions. Her answers are very meaningful, and she has a lot of interests and reactions.

For another girl, it was a very important step to learn to use the toilet. Before, it was only possible to carry her from the bed to the wheelchair and back. She had to use urinal right in the room. To teach her this took a lot of effort: both from her side and from the specialists in adaptive physical training. It took a year of work. Now she can use the wheelchair to go to the toilet and use it without any help.

Skills such as expressing yourself and being understood, being independent in daily needs are changing the quality of life and makes life happier. It’s worth the time and all the efforts of the specialists and the patients themselves.

Do people in the asylum help each other?
Yes, they do. It is often based on personal relationships. It doesn’t always happen in ways such as “the strong helps the weak”, but rather people with complimentary disabilities form symbiotic pairs. For instance, it was very touching, when we had a boy who was very clever (almost as a regular person), but really restricted in movements, and another boy, whose movements were good, but he was restricted in mental abilities, they were doing huge puzzles together. The guy with the good mental ability could only point to the right place with his eyes, while the other boy acted as his hands. They were really enjoying creating these pictures together.

Is there a difference between a volunteer from Europe and a Russian volunteer?*

*«Perspektivi» foundation has an international volunteer exchange program based on the «Voluntary Social Year program».

When we come to Europe, wherever we go we see people in wheelchairs, some of whom have mental disabilities. The fact that they are an equal part of society is something obvious for a European person. They are mostly shocked with how these people are treated here. For the Russian volunteers, the big discovery in general is a person like this and the fact that they have the same needs as we do. It is all due to the differences in experience that people have. Russian volunteers have more empathy and care - the same as towards a child, while for the European person these people are equals - they treat them with great ease. In European society in general, there is more acceptance of the difference in people and more respect towards a person’s individuality and diversity than we have here. European people started to understand much earlier that if a person takes responsibility for their life, they themselves determine a lot in their life. And this is what forms self-respect and respect for others.

Why prolong the suffering of disabled people?

It would be more correct to put the question this way – “Do these people want to live?”. During all my years of working with these people, what has always amazed me is that they want to live more than any other person I know. It all depends on the ability to appreciate things, the ability to take an interest in something, to have an emotional reaction to the positive things. In the asylum, there are an enormous amount of things like this. I believe that their life consists not only of suffering. It is interesting for them to live. Their life is full of emotional experiences, warmth, gratitude, but suffering as well, but then we all suffer. All this convinces me that we must continue doing what we are doing.