OUT OF THE SHADOWS: THE WORK OF PARENTS IN INCLUSIVE EDUCATION IN TAJIKISTAN

This case study examines how one woman in Tajikistan overcame cultural and social obstacles, including Tajik gender norms, family influences, social stigma, and institutional and attitudinal barriers, to enroll her son with disabilities in her village's primary school. This case study offers potential lessons and avenues for educational inclusion for children with disabilities in Tajikistan and helps define some remaining challenges for education for all in the republic. We first discuss some initial problems related to issues of shame, stigma, and gender expectations associated with having a child with disabilities in Tajikistan and additional obstacles posed by cultural norms in rural Tajik society. The woman in our study was able to marshal culturally appropriate means to circumvent them by advocating for her son. We then investigate some institutional and attitudinal barriers related to educational inclusion that the woman encountered, such as the Soviet legacy of state medicalized discourse of children with disabilities and several specific challenges at the local school level. However, the woman in our study was able again to reframe discourses of "health" with the help of Parents' Association for Children with Disabilities in Tajikistan and advocate successfully for her son's inclusion in their local school. Both Tajik civil society organizations and new legal frameworks adopted by the Tajik parliament have been vital in providing parents like the one in the case study with the legal means to challenge education officials and provide their children with inclusive educational opportunities. Lastly, we consider the remaining challenges the family may face as the child progresses through school and beyond and offer some recommendations for their amelioration. Even though in this case the woman in our case study was able to overcome significant barriers to include her son in school, many challenges remain. A very small percentage of children with disabilities are currently enrolled in mainstream schools and state policies remain an obstacle for many parents to advocate on their children's behalf.