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

Introduction

Introduction Martyn Rouse and Kate Lapham Rationale for the Book In spite of worldwide efforts to achieve Education for All (UNESCO 1990, 2001) and attempts to develop inclusive education, there is very little literature reporting on local and national initiatives to extend educational access to all children in the countries of Central Asia. International agencies including UNICEF (2005, 2007) and UNESCO (2010) have published reviews of education and provision for vulnerable and disabled children in many regions of the world, including Central Asia (OECD 2009; UNICEF 2010, 2012). However, there is little research-based literature that reports on local or national initiatives designed to improve services and provision for children with disabilities in the region. Local and international non-governmental organizations (NGOs) have been involved in the development of small-scale initiatives since the breakup of the Soviet Union more than 20 years ago, but other than the evaluation reports on these projects, not all of which are in the public domain, little has been published that might provide the evidential foundation for further developments in education for children with disabilities in the region and elsewhere . In this context, the Education Support Program of the Open Society Foundation has supported a variety of organizations providing educational services to disabled children and their parents as an important way of filling gaps in the current system and demonstrating local services with the potential for replication. As education systems across the region demonstrate increasing interest in inclusive education, it is even more important to understand the genesis, successes, and challenges of these local 2 Introduction models and to explore how they might contribute to system-level reform (Stake 2005). In addition to driving education policy reform in the region, the Open Society Foundation has also identified a gap in academic research covering inclusion of children with disabilities in Central Asia. In the hope of contributing to research in the field of inclusive education, in 2011 the Open Society Foundation began expanding and updating a series of case studies on local models of inclusion in Central Asia with the goal of understanding the barriers and opportunities for groups of ordinary citizens who come together into associations, foundations, and other types of NGOs to serve the needs of children with disabilities. In an environment that still strongly favors segregation and institutionalization, a growing number of parents and professionals are acting on their own initiative to increase the social and educational inclusion of children with disabilities. In many cases they are quite revolutionary in their approach to building and gaining access to services by fundamentally redefining the meaning of education and every child’s right to participate. What has motivated them? How have they found ways forward in very tight funding environments to advance an issue often characterized as a luxury or low priority? How do they see the future of their work? Overview of the Book The Open Society Foundation identified six cases in Kazakhstan, Kyrgyzstan , and Tajikistan that address a significant aspect or specific phenomenon in the local context of inclusive education or social inclusion. The cases raise a number of questions relating to the purpose and nature of schooling, about who should have access to schools and how such access might be negotiated. These cases also ask questions about the respective roles of policy, parents, civic society, advocacy groups, professionals, NGOs, and government agencies. It considers how notions of disability are constructed in the region. In particular it looks at some of the ways in which the Soviet legacy of “defectology” still informs policy and practice today. Specifically, the questions include:  To what extent do education policies and practices include or further marginalize the most vulnerable?  How are services structured to account for the needs of different groups? Introduction 3  Are government programs using education as an equalizing force, particularly in the early years, or are educational policies and practices designed to preserve the status quo, or create new elite groups?  Does the broader community of teachers, parents, and children have meaningful opportunities to participate in the conception, design, delivery, and monitoring of education?  How is disability defined in the region, and to what extent are these notions of disability consistent with social and interactive models of disability in other parts of the world?  What are the implications for the reform of teacher preparation and professional development for those who work to support children, young people, and their families? By asking...