Nothing out of the ordinary Inside Russia’s first private orphanage for disabled children
In March 2015, Russia’s first private home for children with severe multiple disabilities opened its doors in Moscow. In state orphanages, such children would be looked after by special branches known as “mercy departments” until they reach 18 years of age. These departments neither develop nor educate, but rather care for children as if they had been in a vegetative state since birth. Upon reaching their 18th birthday, the children are transferred to a mental hospital. And that's where the story ends. In St. Sophia's orphanage in Moscow, there are people who want to change the fate of at least twenty of these children. Educators, teachers, and speech pathologists are working in the orphanage in hopes that these children won’t be simply handed over to mental asylums. Meduza’s Andrei Kozenko went to St. Sophia's orphanage to find out how it works.
In the depths of a residential area near the metro station Universitet, there is a building that resembles a regular kindergarten, but with a church dome. This is St. Sophia's orphanage. It was privatized back in the mid-1990s, and since March 2015, it has been Russia's only private children's home for children with multiple severe developmental disabilities.
The label “multiple severe developmental disabilities" is usually first encountered by families in maternity wards. Physical damage or cerebral palsy are immediately visible after birth, while Down's syndrome is determined by a blood test. A positive result is usually followed by a strong recommendation from the doctor to abandon the child. Doctors typically explain that due to the living conditions in Russia, the child will have no prospects for development and adaptation. Even those babies whose parents take them home from the hospital often end up in orphanages by the time they are toddlers, when it becomes clear to the parents that they are very different from other children and that further disparity in development will only grow.
In almost every orphanage, there is a “mercy department”. If a child is placed in a “mercy department,” this means that while other children play with each other and meet with adoptive parents, mercy children simply lie in their beds. Even those who could be taught to walk or talk, or read, or add and subtract are bed-ridden. The walls are bare white. No one plays with these children or teaches them anything; nobody is interested in doing so. Any qualities they might be able to develop are squandered. The next stop is a mental hospital.
Gor is eight years old. His actual name is Georgy, but here everyone calls him Gor. He is one of the few children in St. Sophia's orphanage who have no problems with mental development, but he has no control over his lower body. Lacking vital organs, he needs emergency surgery to strengthen his spine. Currently, due to his body alignment, his healthy organs are also suffering. Most likely, this upcoming surgery will be the first of many. It will be performed in Germany. The operation was planned several years ago, but the state orphanage Gor was staying in would not allow him to travel. They said there was a quota of surgical operations that must be performed in Russia. As a result, Gor could not get his surgery.
"It will hurt so much again," worries Gor, who is about to go to the hospital for a checkup. Gor has perfect control over his wheelchair, moving like a figure skater on the ice. In a typical orphanage, he would have spent days without getting up. Gor was one of the reasons that this orphanage was opened.
A timetable hangs on the bedroom door of Olga, another child who lives here. The schedule shows what time she went to bed and what time she woke up on a given day. Since the beginning of March, when Olga began living here, her schedule has been gradually stabilizing: “didn’t sleep all night,” “fell asleep at six in the morning,” “went to sleep four in the morning.” Last week’s results were almost the same as those of the other children.
Olga has severe mental disorders and developmental disabilities. She is 17 years old, but she looks like a small child who can barely talk. Sometimes she goes into fits of rage and is aggressive towards herself. The wall beside the bed is lined with fluffy pillows, and this is incredible progress. Before, at the state orphanage, when she had her fits she would be sent to a mental hospital and strapped to a bed, returning to the orphanage in a semi-conscious state. Any change for the better was suppressed by powerful drugs.
The repeated hospitalizations of Olga, Gor, and other children of the 15th orphanage became a catalyst to get them out of those conditions.
Until 1994, this building was an ordinary state orphanage, which then came under the patronage of the Russian Orthodox Church. It became an autonomous non-profit organization and one of 24 charitable projects of the Orthodox Fund "Mercy." Initially boys and girls lived here, then only boys. One child had cerebral palsy, while the rest were ordinary children who were rapidly adopted. Then the leaders of these 24 projects had a meeting where it was decided to make St. Sophia's orphanage a home for children with the most difficult disabilities. Today, 19 children between the ages of 4.5 and 17 call this place home, and two more children will soon join them.
Svetlana Emelyanova doesn’t look anything like the typical director of an educational institution. She is very young, modestly dressed and very charming. She literally lives at work, spending almost every night in the orphanage. She was born in the city Astrakhan in the southwest of Russia, and attended the Saratov Conservatory, dreaming of becoming an actress. When she arrived in Moscow, she signed up as a volunteer in an orphanage and later managed to become a senior nurse in the city's 15th state children's home. There, she met the children who now find themselves in St. Sophia's orphanage.
"We will gradually bring the children into the open world. No more planned hospitalization," says Ms. Emelyanova. She often uses words like "lucky" and "miracle" when talking about her work. Those two words happen to perfectly describe how she came to become the home’s director. The state agreed to give these children over from the care of a huge institution with a "bed capacity" of 450. Ms. Emelyanova’s children’s home happens to be situated very close to the charity organization called Center for Curative Pedagogues, and the speech pathologists there began working with the children.
Children are divided into three groups by age and development. They are led by five teachers and their volunteer assistants. This ratio goes beyond state standards, which require 2 teachers for every 25 children, and the teachers usually end up working in shifts.
Children get used to the new place, they play and learn to draw and to play music to the best of their ability. Many of them light candles and touch snow here for the first time in their lives. Hygienic procedures are also used for training and understanding one’s body. Here. the children are not dressed, but are taught to dress themselves (with the necessary support). "We try as much as possible to bring our children to a life, we walk and play – this is nothing extraordinary,” the director explains. “We just need to understand that our children cannot survive for more than a few hours without the help of adults. Everything else is ordinary.” What the children and caregivers are doing may not be extraordinary, but the fact that they are doing it for the first time is.
Svetlana added that the whole daily routine is based on respect for the child's personality, on the identification of his or her strengths and their subsequent development to a level so that the child may feel comfortable. In September, the children are going to start attending a correctional school. Moreover, in one of the advanced schools nearby, there is a class called “Special child,” and three places in this class have been reserved for children from the St. Sophia's orphanage. Again, this is “lucky” and “a miracle.”
It so happened that some of the teachers of the 15th orphanage left the institution with the children because they wanted to be with them more.
Pyotr Meysky, one of the few male teachers at St. Sophia's, works in the orphanage in order to be close to 17-year-old Olga. He is a psychiatrist who left his job to work with her. Pyotr, however, says it just turned out that way. He quit his previous job and there was no other opening. I asked him what he wants to achieve as a specialist with a "difficult” girl. "The mental retardation, of course, is not going anywhere,” he replies. “But there are many other conditions she wouldn’t have had if she had gotten the necessary care, or at least they wouldn’t be so developed. We’re trying to deal with those.”
A few weeks in the private orphanage restored Olga’s normal sleep pattern. Before, she slept at any time of the day or did not sleep at all. She had heavy dermatitis, an allergic reaction possibly caused by the drugs she had been given. Now she plays with a ball. She has grown accustomed to a wheelchair and rides around in it instead of lying down all hours of the day. Meysky is very upset that she developed the practice of beating herself, and says that it probably started as an attempt to take control of her body and turned into a destructive habit.
"Olga, just like other disabled children, will realize that she exists, and that the world exists around her. That life goes on every day. She will not have to live in hospitals, won’t be strapped down, won’t spend weeks sinking into isolation," explains the senior tutor of the orphanage, the doctor and therapist Svetlana Shcherbakova. The activities that she and the other caregivers conduct are aimed at improving motor skills and reaction. The children develop their vision, hearing, and throw “snowballs” made of cotton at each other. They take a model of the house and try to understand why it has a roof, and then try to compare the model with the roof over their own heads.
“Is Vera taking us in the car?” asks Gor. When he hears that she is, he blossoms with excitement. “I don’t just love her, I adore her,” he says. Journalist Vera Shengelia previously worked for Radio Liberty. After a conflict and layoffs, she decided to take a break for a year, leaving journalism behind and doing something else. She had always been interested in caring for people with mental health problems. She went to the Center for Curative Pedagogics and got involved with children who have severe disabilities. There she also met Svetlana Emelyanova. “She had just come from the ordinary orphanage with the children. First, I was terribly glad that the children would finally have a therapist who would help everyone. And then I saw that there was no immediate effect. I cried and wanted to take the children somewhere where no one could harm them” said Shengelia. Now she works in an orphanage as a volunteer, a fundraiser, and in public relations. Today, she’s just a driver taking Gor to the clinic in her car.
“I wonder if Gor knows that adults sleep, too,” she asks. “He has never seen them in that state." Gor does not respond; he rests his head on his window and looks at the city.
I ask Vera why she tries to attract so much attention to St. Sophia's orphanage, whether her goal is to get new parents to adopt the children, or if she has other things in mind, too. “We are afraid of these children,” she says. “And that's because we never see them and we don’t know anything about them. It's simple.” I remind her that the one year she had decided to take off from journalism to become a volunteer ended a couple of years ago. After some thoughtful calculations, she waves her hand and says, “Indeed.”
At eight o'clock on Saturday, the children are awake and are getting ready to go to the Center for Curative Pedagogics. The group meets their caregivers. Someone growls and even tries to cry in protest against the early wakeup. Another was determined to go before anyone else and was impatiently making circles in the lobby with his wheelchair. He and almost all the other children must have at least some support to make their way there. One of the boys comes up to me and touches my facial hair. This is an entirely new tactile sensation for him. For about a minute, he tries to study the phenomenon, then he pats my face and a caregiver leads him away to put his shoes on.
The office in the Center for Curative Pedagogics is in fact a game room. There are stuffed animals scattered around and ropes attached to the ceiling. What goes on here cannot be called a class in the usual sense of the word. The children from the orphanage are slow, they have to take half an hour just to be comfortably seated. I sit in a corner of the sofa, when Firuza rides up to me in a wheelchair (she is 14 years old, one of the oldest residents of the orphanage). “Pillow! I want to lie on the pillow!” she says to me. I pick her up and transfer her from the wheelchair to the sofa. Pleased that the trick worked, the girl immediately throws the pillow away and quickly climbs into my lap. “You are my pillow,” she says decisively. “What have you got in your pocket? A phone? Take it out, it’s uncomfortable!”
The class begins. The caregivers who came with the children from the orphanage are here to help them. One of the center’s specialists repeats a phrase in a sing-song voice. “And where is our Olya? There-there-there. Where is our Fyodor? There-There-There.” The children react to the one whose name is called and touch that person. They are forming the natural skills they could not form at the public orphanage, and this process is just beginning. The hunger for tactile experiences is strong in many of these children. The teacher brings a spinning top that has a little train going in circles inside of it. It hums and the wheels clank. The children are fascinated by it. The next class begins. The teacher gets a translucent blue blanket, throws it on one of the children seated in a circle. “The wind blows at the sail; the sail covers Fyodor,” the teacher explains to the children. He usually communicates with the children through poems. It’s easier to attract their attention with the rhythm.
It is certain that none of these children will be given away to a mental institution when they turn 18. Svetlana Emelyanova says that the orphanage wants to extend the custody of children to 23 years. She believes that many of these children would be able to live in their own homes (which the state will allocate by law) if they are monitored and cared for.
Ms. Emelyanova gives the impression of someone who never wants to part with these children. “I do not want these children to be part of the cycle. I understand that alone, I can’t do anything about the rejection of babies in the hospitals,” she says. But what about all the other children? “I need these children,” says Emelyanova.
We say goodbye. There is a boy next to me. He doesn’t speak, but begins to loudly hum some melody of his own. It’s not very harmonious or coherent, but he seems to like it all the same. The teacher tries to steer it in some clearer direction, softly singing a song for him. And a minute later the child, not missing a single note, beings to produce a melody of a famous Russian pop song by Alla Pugacheva, which goes “Without me, my love, to you the earth is like a small island.” And then he goes silent, surprised at himself.