Coping with Cerebral Palsy in Uzbekistan
Coping with Cerebral Palsy in Uzbekistan
A growing number of children in Uzbekistan have developed cerebral palsy over the past three years due to injuries sustained at birth, and both the state and parents are ill-equipped to care for them, experts say.
Cerebral palsy is a term covering a number of conditions that impair motor skills and speech. Birth trauma during labour and delivery is one of the causes, and this is thought to be behind the rise in cases, a doctor at the Centre for Restorative Medicine and Rehabilitation in the Uzbek capital Tashkent said.
“Many babies are injured during childbirth,” the doctor said.
Nigora, 30, is bringing up two children by herself, one of whom, Amir, has cerebral palsy. Her husband walked out when he discovered his son’s condition.
“My husband told me he wanted a healthy son,” she recalled. “His parents supported him, saying the sick child was a disgrace to their family,” she said.
Nigora said she knew of many other women abandoned after they gave birth to babies with cerebral palsy.
In Uzbekistan, children with the condition are treated as disabled and their parents receive a monthly allowance of 60,000 soms, or 30 US dollars, to care for them. The children do not receive free medication, unlike some other disabled categories.
“The state isn’t interested in treating such children,” Nigora said. “People around us just don’t want to see us – this society has shut us out.”
The mother of Igor Sarkulov, a four-year-old boy with cerebral palsy who lives in Angren, a city south of Tashkent, says he needs specialist treatment at least once a year, but this costs too much money.
“We can’t afford it, and sometimes he suffers severe pain,” she said. “Sometimes I face a dilemma whether to feed him or get him treatment. The only thing I can afford with the benefit money is the occasional massage session.”
Some parents place their children in the state-run Murruvat home, located in a Tashkent suburb.
“There are hundreds of mothers who can’t carry the burden of caring for their child,” a doctor at the home said. “Women place their children in shelters because although they love them, they are afraid of the opprobrium of their in-laws and the wider society.”
Ekaterina Podolskaya, a trustee for the Charity for the Vulnerable group in Tashkent, said the government did not run any specialised programmes to educate and integrate children with the condition.
“We have more than 25,000 children with cerebral palsy, whose futures depend entirely on their parents as the state has turned its back on them,” Podolskaya said. “We need independent charitable foundations to support such children.”
A doctor based in the central Syrdarya region said social attitudes were a major obstacle.
“Society fosters the ideal of healthy children, and those who are unwell are seen as a punishment by God, especially in rural areas,” he said. “The parents isolate these children, so they don’t get proper care.”
This article was produced as part of News Briefing Central Asia output, funded by the National Endowment for Democracy.
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