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Study examines the situation of children with disabilities in Uzbekistan

© UNICEF Uzbekistan/2005
Sixteen-year-old Aziza and her friend Shakhlo, who both have cerebral palsy, spoke at the launch of Uzbekistan’s report on children with disabilities.

By Anthony Burnett

TASHKENT, Uzbekistan, 29 March 2005 – Uzbekistan is taking a closer look at the situation of its children living with disabilities. On 25 March, Uzbekistan’s Scientific and Practical Centre, in collaboration with the Ministry of Labour and Social Protection, launched a report examining why these children are often institutionalized, and exploring options for restoring them to parental care, with appropriate support from the government.

The report was prepared by researchers from the Centre, which has a special focus on family-related issues, and was funded by UNICEF.

Present at the launch were children living with disabilities, many of whom have had to face stigma. Sixteen-year-old Shakhlo has cerebral palsy, and came to the meeting to speak about her experiences. She said: “We don’t want pity. We are not different from other people...Maybe it is the people who look at us with pity or laugh at us, who are themselves disabled.”

Others who spoke included Shakhlo’s 16-year-old friend Aziza, who also has cerebral palsy, and 15-year-old Kamoliddin, who has a visual impairment.

The number of registered disabled children in Uzbekistan has increased from 70,000 in 1996 to more than 132,000 in 2003. This is probably a conservative figure due to the stigma attached to registering children with disabilities. Today, nearly 20,000 children in Uzbekistan live in institutions for the disabled.

© UNICEF Uzbekistan/2005
The launch of the report was attended by senior government officials, by representatives from the ‘Scientific and Practical Centre, and by officials from UNICEF, the World Health Organization, and other international organizations.

An important step forward

The report marks an important step towards ensuring that children living with disabilities are able to realize their rights to education, health care and full participation in cultural life. 

One of the goals of the study was to examine the reasons for the institutionalization of children with disabilities. Among the reasons listed in the report are the following.

• Some families feel that they are unable to provide proper care for their children, often due to worsening economic conditions.
• Some parents are themselves living with disabilities.
• Alcoholism is also often a factor. 

Interviews revealed that two-thirds of parents of children with disabilities chose to place these children in institutions – but one–third later changed their minds, wanting to take back their institutionalized children, given an opportunity to do so.

For their part, Shakhlo, Aziza and Kamoliddin presented strong recommendations to the conference.  “We want to study with other non-disabled children. If you put us in institutions we will not get the same quality of education,” said Kamoliddin. “I want to study subjects such as geometry and algebra, but the facilities are not available. Even the Braille books we have are worn out and cannot be used.”

The children at the launch all said that they had suffered considerably as a result of the stigmas attached to disability. “Children of our age laugh at us and adults try to offer us money,” said Aziza.  She recommends that parents educate their children in order to help them accept people with disabilities. 

© UNICEF Uzbekistan/2005
UNICEF Uzbekistan Communications Specialist Anthony Burnett interviews Aziza, Shakhlo and Kamoliddin.

A successful outcome

A key aim of the research was to find ways to bring disabled children back to their families. At UNICEF’s suggestion, researchers raised this issue when they were conducting interviews with parents.  A number of the parents who were interviewed later decided to bring their institutionalized children back home.

The government, supported by UNICEF, is assisting these parents and others like them, by modifying the applicable laws, providing additional social benefits to families who need them, and providing in-home education.

Sabine Dolan contributed to this story.



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