Learning to See Invisible Children: Inclusion of Children with Disabilities in Central Asia

Out of the Shadows: The Work of Parents in Inclusive Education in Tajikistan

Out of the Shadows: The Work of Parents in Inclusive Education in Tajikistan Christopher M. Whitsel and Shodibek Kodirov A knock at the gate breaks the noises of village life on a crisp fall day. A busy mother sorting rice sends her son to the gate to see who has come. The woman at the door is a stranger who begins asking questions about whether there are disabled children in the home. She is doing a survey in the area to count the number of disabled children and is asking basic questions about the children. The mother is instantly ashamed and asks, “How did you find my house?” “We asked the neighbors, and they mentioned a disabled child lived here,” the stranger responds. The mother demands, “What do you want to know?” and the stranger replies, “Only basic questions to know who is in the area.” It turns out that the woman is a representative from a local parents’ association of children with disabilities. The stranger mentions, “We also have information we can offer, and our association works with parents to help their children.” It is the first time that the mother has heard of any such organization, that anyone in society would care to help her disabled child. Usually, it is considered a shame for the family to have such a child, or at the very least a burden. She wonders what good a parent organization is and if it would improve her child’s life. This was a scene repeated in several villages and in cities across Tajikistan as representatives from various parents’ organizations recently carried out surveys of the incidence of disability. The goal was to learn how many children with disabilities there were in their neighborhoods, because the available data are insufficient. One of the reasons data are unreliable is that many parents do not register the birth of children with a disability, even though doing so could mean that they get state support. Thus the number of disabled children registered by the state is much lower than actual rates, making it difficult to assess the need. 36 Christopher M. Whitsel and Shodibek Kodirov Parents’ associations across Tajikistan have helped increase awareness of the need for inclusive education, often through simple tactics. Many parents’ associations in Tajikistan have two primary goals. First, they teach parents about the value of all children and the importance of bringing their children out into society. Second, they inform parents of their rights and their children’s rights. Equipping families in these areas leads to empowered parents, inclusive schools, and ultimately a more inclusive society. To demonstrate how these changes are occurring in society, we highlight the case of the Association of Parents of Disabled Children (APDC) in Dushanbe. We first review the context of Tajikistan, then provide a description of how the organization was founded and some examples of the work that they do. This is followed by excerpts from a focus group discussion that illustrates the changes taking place as a result of their work. The Context of Tajikistan Today’s Tajikistan occupies mountainous territory on the southernmost edge of the former Russian and Soviet empires. China lies on its eastern border and Afghanistan lies to the south. It was conquered by Russia in the late 19th century and gained its current borders in the 1920s, when the Soviets delineated the territory of previous emirates and khanates into republics supposedly organized as ethnic homelands of the Kazakhs, Kyrgyz , Tajiks, Turkmen, and Uzbeks. Once Soviet rule was established in the country, a large-scale modernization project was begun. Many kilometers of roads and railways were built. Production was mechanized. Hydroelectric dams were erected in the river beds. Russo-European culture was actively promoted in the hope of supplanting traditional cultural norms viewed as backward by Soviet ideologues . The current education system was established in this time of great modernization. Literacy rates at the beginning of the Soviet era were estimated to be well below 5 percent of the adult population (Pennar et al. 1971). Within 20 years of Soviet rule, leaders were boasting that they had built schools in every village and that universities had been established (Negmatullaev 1949), although scholars say the conditions of schools were often deficient and that even today there is not a school in every village. Nonetheless, estimates at the end of the Soviet era put adult liter- Out of the Shadows 37...