Perpetual children

Ukraine House in Kyiv is hosting Ukraine’s first exhibit of photos and posters depicting children with Down syndrome. The show, which ends on Oct. 23, features the work of 20 well-known artists from six countries, including Russia, Japan, and Ukraine. By exhibiting their works, the artists want to draw public attention to people affected by this disease and to change public attitudes to them. The title of the exhibit — “Normal People but with Down Syndrome” — is in line with this goal. The show was organized by parents of children with Down syndrome, who call their parenthood a profession.

“The idea of organizing this exhibit came from Moscow,” says Oleksandr Shamansky, one of the organizers. “These kinds of projects are organized much more often in Russia than Ukraine. So a lot of the works on display here arrived from Russia. It is not important what nationalities — Ukrainians, Russians, or others — are depicted on the photos. They all have a common fate — to adapt to life with a diagnosis of Down syndrome.”

Shamansky’s words are consonant with a poster that reads “Same eyes, same heart, same hands, but a different destiny.” Parents of Down syndrome children are convinced that they differ from their healthy peers only in their slower development and learning about the world.. They are fully capable of living a normal life, in which parents are supposed to play a key role. According to Shamansky, 400 children are diagnosed with this disease every year in Ukraine. Most parents (65 percent) immediately reject them. But these children cannot possibly undergo a course of social adaptation without them because nobody needs them but their parents.

If parents choose to keep their Down syndrome child, they will have to overcome many difficulties. Parents cannot get over the shock that they experience after doctors give them the diagnosis, and they start looking around for specialists who will teach them how to care for their child.

“The first step that parents should take is to accept their child the way he or she is,” says Olena Oliinyk from the Kharkiv-based Center for Early Intervention. “More often than not parents do not believe that Down syndrome children can develop even a little differently from healthy ones. If you work constantly and diligently with a child, you can achieve excellent results. These are not just isolated cases. For example, 28-year-old Borys from Kyiv is now doing high school courses part-time and is completing his studies at a local vocational school. He learned to write when he was six, but he was barred from school because of his illness. He is now catching up on lost time — naturally, with the help of his parents.

Ra-Photo Gallery photographer Yevhenia Sychynska claims that it is extremely difficult to photograph Down syndrome children. They are always turned inward and it is hard to cheer them up, make them smile, or run merrily around their parents. While working with two-year-old Anton, Yevhenia managed to win his trust and convince him that she would not do him any harm. Most academics believe that Down syndrome people remain children for life, and therefore they consider them socially unprotected. Yevhenia succeeded in changing this stereotype. Her photo shows little Anton smiling in a grown-up way, protected by his mother’s arms.

To change public attitudes to Down syndrome people, the exhibit organizers invited the Prostodushnye Theater of Moscow to Kyiv. For two days the actors will perform dramatic roles, showing audiences that in real life they are normal people, only with special needs. The members of this theater company also have Down syndrome.