You're reading: Children with cerebral palsy in Ukraine ‘struggle from the first day of their lives’

When Roman Kisliak, a man living with cerebral palsy, was forced to leave a restaurant in Lviv because the waiter thought his behavior was suspicious, the public was outraged.

For Kisliak it all ended well. When news of the incident spread, he gained tremendous public support, with First Lady Maryna Poroshenko even inviting him for coffee. But it is all too common in Ukraine for people living with cerebral palsy in Ukraine to be similarly maltreated.

Disapproving stares, fearful looks, or just being ignored – these are some of the things Ukrainians with cerebral palsy have to deal with every day, without it ever hitting the headlines.

To highlight and improve the treatment of people with special needs, Kisliak initiated a flash mob campaign called “Coffee with a Friend.” After his bad experience in the Lviv restaurant, Kisliak told the media that he now rarely goes to restaurants.

So to emphasize that the people with disabilities are equal members of society and have the same right to visit public places, Kisliak called on Ukrainians to invite friends with special needs out for a cup of coffee.

To support Kisliak’s initiative, Palms of Happiness CP, a charitable foundation helping children with cerebral palsy, organized a tea party for the mothers of affected children and asked them about the everyday problems they face.

Children suffering from cerebral palsy and their mothers gather for a tea party in Lviv Handmade Chocolate café on Feb. 17. (Kostyantyn Chernichkin)

“You can’t imagine how happy he was when he found out that we were going to a café,” says Tetiana Prudnykova, the mother of three-year-old Mykhaylo, at the tea party. “He’s happy every time we go out to see other children.”

It doesn’t happen often. Mykhaylo can’t be enrolled in a kindergarten as he can’t sit or crawl yet. Prudnykova was lucky to find a place for her son in a reading class for children in a state library.

Their story is typical for families that have children with cerebral palsy. While there are no specific statistics on how many Ukrainian children suffer from the condition, nearly 100,000 have disabilities related to neurological disorders. Children with cerebral palsy are denied enrollment to regular kindergartens, and special-purpose kindergartens don’t have enough places for them.

Enrolling in a regular state school can be hard too, so children with cerebral palsy often end up in boarding schools for children with special needs. After finishing such schools, they either stay at home with their parents or live in a hospice for people with psychiatric and neurological conditions. Either way, they are usually excluded from social life.

Prudnykova thinks that the society pushes away people with special needs out of fear.

“When we don’t want to see something unpleasant, we hide it behind a fence,” says Prudnykova. “At first, children go to boarding schools, then to hospices. They are shut in there, they don’t see other people – it’s like they’re living in a prison.”

Tetiana Prudnykova holds her son Mykhaylo as she talks about the difficulties of living with cerebral palsy in Ukraine on Feb. 17. (Kostyantyn Chernichkin)

But even when not staying in a boarding school, children with cerebral palsy often live almost entirely within the four walls of their homes. Taking them out is challenging for parents, both physically and psychologically. The most obvious problems are the lack of ramps and elevators on Ukrainian streets and on public transport. Besides, many doorways are too narrow for baby carriages or wheelchairs.

But another reason is the reaction that people with cerebral palsy get from people on the streets.

“The process of rehabilitation is very hard and stressful itself,” says Prudnykova. “It can include painful courses of treatment, when your child screams and cries, but you can’t help him. When, after all that, someone gives you a disapproving look on the street or doesn’t let his child play with yours at a playground, you stop even wanting to go outside.”

Even medical workers can be unsympathetic. When doctors told Svitlana Sydorova that her son Tymofiy had neurologic problems, they said: “It’s a cross you have to bear. This is punishment for your sins.”

Later she realized this view was widespread in society.

“I often notice people staring at us on the streets,” says Sydorova. “They think that such children are born into the families of drug addicts or other marginalized social groups. Other parents think that cerebral palsy is contagious and don’t let their children play (with Tymofiy).”

Tymofiy is only two-and-a-half years old, but he has already undergone a long series of courses of treatment. Since he was five months old, he has undergone regular treatment at the Medical Center for the Rehabilitation of Children with Organic Lesions of the Nervous System on Bohatyrska Street in Kyiv. This is the only state-financed center in Kyiv and one only a few in Ukraine where children with cerebral palsy can receive medical help for free.

But although the center’s services are free, each child can only take a limited number of rehabilitation courses per year – and that number isn’t enough for them to make real progress. So, Sydorova, like many other parents, also has to hire private doctors. The monthly aid she receives from the state is only Hr 1,300 ($47). That’s enough to pay for three visits by a rehabilitator. However, her son needs at least three visits per week.

And that is only part of Tymofiy’s rehabilitation. He also needs lessons with a speech therapist, equine-assisted therapy, exercises in a swimming pool, and other therapies.

Like Mykhaylo, Tymofiy can’t go to a kindergarten. He suffers from epilepsy and this will probably stop him from going to school in the future – schools usually deny enrollment to children with special needs because they don’t have the qualified medical staff to look after them.

Mothers of the children suffering from cerebral palsy gather for a tea party in Lviv Handmade Chocolate café on Feb. 17. (Kostyantyn Chernichkin)

Sydorova thinks that the state should create a system of institutions for people with cerebral palsy, from inclusive schools to professional learning institutions.

“All children with cerebral palsy should be able to grow into self-sufficient people who will be able to work and do something important for society, not just live in a hospice,” she says.

Nataliya Kravets has also faced hostility towards her and her son. Six-year-old Daniil can’t walk. He has difficulties with speech, and sometimes has behavioral problems. A year ago Kravets was in a grocery store with her son when an elderly woman approached them and said that her boy was “defective” and that Kravets should not visit public places with him.

“It is important to inform society about cerebral palsy, but it’s even more important to inform the parents of the affected children,” says Kravets. “At the maternity hospital the doctors didn’t provide me all the necessary information concerning rehabilitation programs, their pros and cons. Instead, they just repeated time and time again that this was a cross I had to bear.”

No one told Kravets that some methods of rehabilitation could be harmful to children with epilepsy. Only when Daniil was two-years-old did doctors tell her that he could barely see. Until that time, they said that everything was all right, and that his sight would develop along with his brain.

Daniil’s parents managed to get treatment to restore his sight, at least partially. In a year he will be enrolled in a preparatory class for a grade school, but until he can walk by himself he will have to study at home with a teacher. Daniil can’t speak, but he knows how to read and count. When his mother shows him a picture and then gives him a set of letters, he can select letters to spell out the word associated with the picture. When he is asked to add numbers, he claps the sum on the palm of his mother’s hand.

“Children with cerebral palsy are just like others,” says Kravets. “They can lag behind in development. How could he not lag behind if he was almost blind? But their intelligence is not damaged. They struggle from the very first day of their lives. They put up with pain, they take tons of medicines… They deserve a smile like no one else.”

To make donations to help Ukrainian children with cerebral palsy, visit the Palms of Happiness CP website: http://bfdoloni.com.ua/en_US/