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

cover artEducation is the first institution of society outside the family that touches a child’s life through attendance of a kindergarten or primary school. Children who learn the lessons of prejudice, oppression, and corruption through exclusion from education or discrimination in the classroom will internalize and perpetuate these values as adults, making societies less cohesive and less equitable.

In this light, education that is inclusive and high-quality becomes a question of human rights and a necessity for peaceful and prosperous political development. It is a public good rather than a charitable activity, and the success of an education system delivering on this promise can be judged by the way it touches the lives of children most likely to face discrimination. In Central Asia, those most likely to face discrimination are children with disabilities. This book collects six case studies to explore the ways that children with disabilities interact with education systems in Central Asia. Often formally excluded from the schools in their community through placement in special schools or homeschooling, these children are often invisible to all but their families and a handful of specialists. If they are seen at all, they are viewed as objects of charity rather than people with rights. Thus, they are denied the capacity to participate in and enrich society. Governments in Central Asia have taken steps at the policy level to make education more inclusive, and international agencies have attempted to provide statistics on children out of school. Local and international NGOs have implemented small-scale initiatives to promote inclusive education since the breakup of the Soviet Union. However, there is little research that reports on these initiatives designed to improve services and provision for children with disabilities in the region. Other than the evaluation reports on these projects, not all of which are publicly available, little has been published to provide the evidence for further development in inclusive education for children with disabilities in the region. These case studies document models of inclusive education, community-based services, and advocacy by parents of children with disabilities to begin filling that gap. There are two studies that look at school-based programs in Kazakhstan and Kyrgyzstan, three studies that explore the role and power of parents in Kazakhstan and Tajikistan, and one study focusing on a community-based program for children with complex disabilities in Kyrgyzstan. Teams consisting of one researcher based in Central Asia and one international researcher with a specific interest in education or disability developed each case. As a result, these stories are told through the framework of several academic disciplines, including anthropology, comparative education, ethnography, and sociology. The common themes emerging from this research covers familiar territory to those working in the field of education. There is an urgent need for support to schools, including retrofitting accessible buildings, teacher training, and restructuring schools with additional staff to support better quality, more inclusive education in the classroom. There are also stories of the power of parents to overcome huge cultural and bureaucratic obstacles to realize their children’s right to education and community participation. The most hopeful themes emerging from this research deal with the positive changes for children, parents and teachers as a result of taking risks to demand or implement inclusive practices. We see that one type of inclusion often leads to another in the chapter by Hartblay and Ailchieva through the example of the teachers in Belovodsk, Kyrgyzstan who feel inclusive teaching has equipped them to work with children migrating from the south with limited fluency in the language of instruction. The chapters by Gatling and Juraeva, Kauffman and Popova, and Whitsel and Kodirov, explore the journeys of the parents in Kazakhstan and Tajikistan who can advocate their rights, refer professionals to each other, provide support themselves, and raise funds for inclusion in local schools as a result of coming together to support one another. There is significant variation within state agencies that can sometimes support progressive change from within, as in the chapter by Markova and Sultanalieva. Finally, in the chapter by Kokina and Bagdasaorva, teachers blossom professionally in cooperative, inclusive learning environments. These case studies are not blueprints of perfect practice. They are real examples of the messy struggle for inclusive education intended to illuminate the complex and contested ground on which attempts to educate all children are currently being enacted. Finally, perhaps these case studies may help in a small way to create a policy climate more supportive of the education of children who may have been excluded in the past. The book is available for purchase in paperback or Kindle formats on Amazon.com, and a full list of chapter titles is available below. If you would like a review copy of the book, please contact me, Kate Lapham, at kate.lapham@opensocietyfoundations.org.< ol>

  • “Tradition, Stigma, and Inclusion: Overcoming Obstacles to Education Access in Tajikistan” by Benjamin Gatling and Mazura Juraeva
  • “Out of the Shadows: The Work of Parents in Inclusive Education in Tajikistan” by Christopher M. Whitsel and Shodibek Kodirov
  • “Parent Activism in Kazakhstan: The Promotion of the Right to Education of Children with Autism by the Ashyk Alem Foundation” by Mariana Markova and Dilara Sultanalieva
  • “Fools Rush In: A Path to Inclusive Education in Petrapavlovsk, Kazakhstan” by Nils J. Kauffman and Larisa Popova
  • “Raising Children without Complexes: Successes and Shortcomings in Implementing Inclusive Education in Northern Kyrgyzstan” by Cassandra Hartblay and Galina Ailchieva
  • “Community-based Services in Kyrgyzstan: Umut Nadezhda Rehabilitation Center” by Anastasia Kokina and Nina Bagdasarov