Children with disabilities in Kyrgyzstan: from shut-in care to respect in society
By Galina Solodunova
For decades now, parents in Kyrgyzstan whose children happen to have a disability have been routinely advised to place them into institutional care. Maternity nurses, relatives, neighbours, doctors: it seemed like the whole of society is against these children staying with their birth families.
Yuri, 11, has never known a home outside of institutionalised care: he started his institutional sojourn straight from the maternity house. When he was born, doctors stated that his condition could not be cured; instead, he was prescribed ‘love and care’. Despite this, his biological family decided they were unable to care for him and Yuri became a ward of the state. He started with a home for infants in Tokmok town, then he lived in an institution in Belovodskoe village for a while, then he was assigned to an institution in Pokrovka village. Half a year ago he was brought to a Jalal-Abad institution for children with severe disabilities.
His current place of residence excites him. He shared, “I like it better here, because I am not beaten and I can go to class and do interesting things with cubes and toys.” Although he did not specify if he had been beaten by caregivers or other children in the previous institutions, it was clear that he did not receive much of the prescribed ‘love and care’.
Today, a similar fate is shared by around 11,000 children in Kyrgyzstan.
Yuri’s last placement before his current one, the Pokrovka psycho-neurological institution, was closed half a year ago on the grounds that it was found to be a dangerous place for children. Electricity cuts were a daily routine. Toilets were outside the building in ruined conditions and there was no water source inside. Washing was a rare luxury for children and a toilsome labour for staff. A lingering acrid smell and deplorable conditions made outside visitors wince. Difficult physical conditions coupled with an absence of training greatly demoralised the staff. Even when newly painted, the grey and blue painted walls reminded one more of a prison than a home for children who needed special care and support for their development. Upon strong advice from UNICEF and civil society partners, the Government closed the institution.
To return all the institutionalised children to family environment and to prevent new placements is the ultimate goal of the child care system reform in Kyrgyzstan. To achieve this goal, UNICEF assists the Government to establish alternative services, like day care centres, for children who are reintegrated with their families and to enhance support given to families living in difficult life situations.
More and more staff in institutions welcome the idea of a graduate transformation of their institutions into family support centres. The director of the Jalal-Abad institution said, “We know that it will not happen soon, but every day, we make a step towards [becoming a family support centre].” She is proud of the many small victories already, “We are tracking and working with parents more and more. Some children have been taken back by their relatives. I now see light in the eyes of the staff and children.”
Even without knowing about the larger systemic changes taking places, the children can already feel a difference in daily routines. They see more visitors. They no longer feel isolated from the outside world. Some rooms have been transformed into classrooms where they can study. The biggest novelty that has brightened up their lives is a small device carried by nurses that produces music. The children love to dance. Some waltz in the garden or in front of mirrors, others make dancing gestures with their hands while seated in wheel chairs, other dance with their eyes and faces – the only body parts that they can control. But they all dance and smile. In turn, this has a positive effect on the staff: “When we see how strong children are, children who cannot move, who have never been outside their institution, we understand that we do not have any right to be pessimistic. They make us stronger” says one of the nurses.
UNICEF’s work with care giving institutions is complemented by technical assistance in maternity houses. UNICEF works with medical staff to reduce the promotion of institutionalisation for children with disabilities, as well as helping staff recognise early symptoms of families who want to abandon their newborn children and provisioning the families with referrals to relevant services. At the same time, UNICEF supports local authorities in opening day care centres for children with disabilities. All these efforts are part of ongoing child care system reforms.
Still, change takes time. Efforts to find Yuri’s parents have produced few results, but the more he hears stories about other children's positive experiences, the better he can depict a desired family in his dreams. Yuri remains an optimist and most of the time he smiles and talks, especially when his old friend Bermet (who was also moved from Pokrovka) is near him. They like to play with a ball in their wheel chairs and there is always somebody nearby to help if the ball bounces away. But from time to time, their eyes stand still and the children plunge in thoughts, dreaming about another life that they never had – a life with their families.
Unlike Yuri, Miraida, 16, has experienced life both with and without her birth family. When Miraida was seven, her parents made a difficult decision to temporarily place her in the same Jalal-Abad institution where Yuri and his friends now live. Miraida's mother Janyl sought work in neighbouring Kazakhstan to earn money for their family; with her away, there was no one to care for Miraida. Janyl left but three days later she received a call from her husband who informed her that he could not stand the tears of their daughter, so he brought her back home. Janyl had to return to care for Miraida. Later there was another try initiated by Miraida herself who understood how difficult it was for her parents to live without money, but that try was also not successful.
“Despite all the efforts of the nurses, Miraida could not reconcile herself. She was crying all day long,” recalled Janyl. Since that time, Janyl has never again thought about seeking employment abroad.
It has never been easy for their family. Janyl takes care of her mother, 81, who like Miraida cannot walk and raises two other daughters and a stepson. Her husband tries to support the family as he is able, but sometimes he feels exhausted in his daily quest for means to make ends meet. “It is difficult, but not as much as before. For quite a long time, we were ashamed to take Miraida outside. But now we go out, when we go to [the day care centre] “Ariet”, people at the bus stop help us to get into the transport. At the centre we meet many people in similar situations and other guests. There is no more a feeling of being alone” said Janyl.
Janyl and Miraida have attended the day care centre “Ariet” for three years already. The centre is supported by UNICEF. It has a sensor room, where children can relax; engaging toys that encourage childhood development; and newly trained specialists to help both children and their parents to learn and develop. But most of all, people praise “Ariet” for giving them an opportunity to come together to talk about their concerns and joys and learn from each other while meeting new and interesting people.
Recently at the Centre, Miraida and Janyl met Hege-Anette, a woman with Down’s syndrome from Norway, and her mother Anne. Over the course of an extensive conversation, they shared their stories and exchanged a long list of their victories. Anne talked about how she managed to get her daughter to an ordinary school back in Norway some 30 years ago and convinced the teacher to teach English to Hege-Anette. At that time, the attitude towards children with disabilities in Norway was similar to present day Kyrgyzstan. Now Hege-Anette can speak a little English and knows many songs, not only in English but also in Russian and other languages. She sang a famous Russian song “Katyusha” together with Janyl and Miraida.
In her turn, Janyl showed her prize for being the winner in an arm-wrestling competition among other mothers of children with disability. She revealed the secret behind her win: every day she does exercises with a small hand training device which helps her to keep her muscles strong. “I must be fit,” she smiles, “Miraida is growing and I need to be able to raise her.”
In addition to helping her mother stay fit, Miraida shares her infinite love with her. Janyl said: “Once she told me that my other kids would grow up, get married and leave me, but she would always stay with me and take care of me. Miraida gives me strength to value life, no matter what.”
“Despite all the difficulties, children with disabilities give us strength.” Statements like this are becoming more and more commonly heard within institutions like where Yuri lives, as well as at centres like the one Miraida attends. It is an indicator that these children can be the key to the strength and humanity not only for their parents and people who care for them, but also for society at large. They can help members of society be more tolerant and peaceful, as well as teach them how to enjoy and value life. The growing number of volunteers in day care centres who come to play with the children and help the children's parents shows that this future is possible and a ray of hope for Kyrgyzstan.