Abkhazia’s Invisible Children: Life with Down Syndrome

Author: Marianna Kotova
Edition: Unseen Borders

Alisa is five years old, but she doesn’t know it. She cannot say her age as her speech is limited to three words: mama, baba (for babushka or “grandmother” in Russian), and dai (“give” in Russian). Yet she smiles a lot, in a true tribute to her being a “sunny girl” as children with Down syndrome are often described.

She holds tight onto her baba’s hand as they walk into a bookstore in downtown Sukhum, Abkhazia’s main town. Next stop, the playground. Like any other child, Alisa loves playing, but, more often than not, other children keep her at a distance.

“It’s their parents. They don’t want Alisa to play with their kids,” the girl’s grandmother, Lyuba Vartagava, says regretfully. “They don’t know how to treat a child with Down syndrome. It is not so difficult, though. You should just not pay attention to it.”

Alisa is one of 26 children in Abkhazia with Down syndrome, a genetic condition that causes a mild to moderate intellectual disability and is associated with a distinctive facial appearance. These children account for a tiny percentage of the 568 disabled children under the age of 16 who are registered by the Ministry of Health. Unlike Alisa, they are rarely seen on Abkhazia’s playgrounds. Here, the stigma surrounding disabilities runs strong.

Fifty-six-year-old Vartagava, who is Alisa’s primary caregiver since her parents work full-time, occasionally chats with mothers who keep their own disabled children at home. These mothers claim they are aggressive and cannot mix with their peers.

“I understand [them]. It’s not easy. But these kids are like a mirror; they reflect what they get. If you love them, they give you in response the most sincere feelings [of love]. If you get angry [at them], then you’ll see the aggression. They are very sensitive. [You] mustn’t upset them.”

Vartagava has embraced Alisa’s curiosity about the world -- together they play, shop, go for long walks. She used to work as a seller at the local market, today she dedicates all her time to her granddaughter. Twice a month, a specialized therapist meets the little girl for private speech sessions and twice a year she checks into a specialized center in Sochi, Russia for appointments with doctors and psychologists and to attend speech and art-therapy classes.

The family holds a Russian citizenship which lets them claim a 14,000-ruble ($248) monthly disability allowance in Russia. In Abkhazia, the allowance ranges between 1,300 rubles ($23) and 2,000 rubles ($35), depending on the type of disability. 

As a psychologist at Sukhum’s State Rehabilitation Center for Children with Disabilities, Denis Chanba daily confronts parents’ embarrassment and sense of shame.

Denis Chanba, 35, is a psychologist at the State Rehabilitation Center, the only facility in Abkhazia providing medical assistance and specialized therapy to children with disabilities.

“Our society is not fully ready to understand and accept that there can be kids with disabilities among us [who] need help and human interaction,” explains the 35-year-old therapist. “The main reason is lack of awareness. People are always afraid of what they don’t know. And sometimes this fear is expressed in aggression.”

A 2014assessment conducted in Abkhazia by World Vision, a US-based non-governmental organization, highlighted that most medically diagnosed disabilities are related to physical impairment, whereas the identification of intellectual, emotional, and behavioral disabilities remains “highly controversial.”

In focus groups, 60 percent of the study’s 100 respondents maintained that children with mental health or intellectual difficulties, including autism, are not able to participate fully in life. Roughly half held this view about people with physical, vision, hearing or speech disabilities.

Chanba thinks this attitude will not change in the near future. No Abkhaz institution specifically works with children with Down syndrome. Government support for including the disabled in mainstream society does not exist, nor does a specialized curriculum or public preschool.

The lack of such preschools prevents children from beginning a regular education.  

The State Rehabilitation Center is the only chance disabled children have to start that process in Abkhazia. According to the head nurse of the center, Esma Adleiba, 485 registered children regularly visit the facility for check-ups and rehabilitation sessions, depending on their conditions. A few remain in the facility for up to 14 days to receive needed medical assistance.

Only two have Down syndrome -- arguably, a potential reflection of many parents’ disinclination to take such children out in public. The rest have various disabilities, including cerebral palsy and autism. 

Speech pathologist Indira Kvarchiya is one of the 37 specialists working at the State Rehabilitation Center. The facility offers free-of-charge assistance to disabled people under the age of 20.
Eliso Malaniya is an elementary school teacher who instructs intellectually disabled children at the State Rehabilitation Center how to read, write and count.
Occupational therapist Aslan Chketiya, 25, helps a child in a series of physiotherapy exercises. Five additional specialists are expected to be hired by the end of 2018, according to State Rehabilitation Center Director Gaguliya.
A boy at the State Rehabilitation Center plays on one of the beds available to patients from outside Sukhum. Currently, 485 people attend regular rehabilitation sessions at the facility.
Aslana Djindjolia, 7, was born with osteogenesis imperfecta, a rare condition affecting the bones that is also known as brittle bone disease. After medical treatment in Russia, Djindjolia underwent leg surgery in Croatia, where she received implants that grow with her leg. She is now relearning how to walk.

At the Center, physical therapists work with children on audiometric machines to assess their hearing and equipment for physical exercises as well as in a swimming pool. Others help children develop their intellectual and motor skills by molding plasticine, gluing decorations on appliqués or creating toys with cardboard, paper and fabric.

The Center can board up to 20 children from outside Sukhum free of charge.

It is far too little, though, laments Chanba.

“There are examples of people with the [Down] syndrome whose professional achievements are outstanding,” he explains. Without such educational support, those with Down syndrome simply live on the edge of society in later life.

By exposing five-year-old Alisa to the outside world, Lyuba Vartagava is trying to prevent such a future for her granddaughter.

We are a non-profit media organization covering the topics and groups of people that are frequently ignored by mainstream media. Our work would not be possible without support from our community and readers like you. Your donations enable us to support journalists who cover underrepresented stories across the region.