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

Parent Activism in Kazakhstan: The Promotion of the Right to Education of Children with Autism by the Ashyk Alem Foundation

Parent Activism in Kazakhstan: The Promotion of the Right to Education of Children with Autism by the Ashyk Alem Foundation Mariana Markova and Dilara Sultanalieva Introduction This chapter presents a case study of a new organization of parents of children with autism, Ashyk Alem (Open World), in Almaty, Kazakhstan. We look at how parents have come together, what has motivated them, and the ways they have interacted with the existing system of services for children with special needs (mostly health care and education) to demand the constitutionally promised equal access to education for their children. We explore the educational, social, economic, and cultural factors in the country that impact the current state policy—promoting inclusive education for children with special needs—and try to understand how to implement inclusion and reduce barriers to learning and participation. The paper suggests venues of collaboration between the state and nongovernmental organizations (NGOs) using the agents of change working within the state system and within broader civil society in order not only to enhance the national system of education but also to meet the standards of social justice adopted by many other countries. The chapter will explore the opportunities that emerge when parents unite and work towards common goals by sharing some of the ideas of the founders of Ashyk Alem. Finally, we will explore the most recent developments of the civil society in Kazakhstan and the potential for empowering parents in Kazakhstan as it democratizes. 52 Mariana Markova and Dilara Sultanalieva The Fieldwork and Research Methods The goal of this case study is to explore how, in the absence of a national tradition of parental activism, parents have been able to transcend their family problems, to register an organization, and to advocate for the rights of their children to receive educational, health, and social services and have equal access to education as guaranteed by the constitution. The field visit to Almaty was conducted in September 2011 by a local researcher, Dilara Sultanalieva (one of the three founders of Ashyk Alem), and an international researcher, Mariana Markova. The data for this case study have been collected from interviews, site visits, and two focus groups. Interviews were accompanied by participant observation. The first observation was focused on the work of the city Psychological-MedicalPedagogical Commission (PMPC), an institution that elicited numerous complaints from parents. The second observation was conducted during a school meeting between a mother of an autistic child and a group of disgruntled middle-school teachers demanding the removal of her child from the school. (The child stayed.) Ms. Sultanalieva compiled the list of interviewees based on her knowledge of the local stakeholders and their availability. The interviews with mainstream school directors were arranged with the help of another local expert, Larisa Popova. The NGO directors were asked to talk about the barriers to inclusive education and to describe their experiences of children with special needs. Four parents of autistic children, who participated in the activities of Ashyk Alem, were asked to share their child’s educational trajectory , specifying the points where they had to struggle with the system and express their ideas about the role of a parent organization. Parents were also asked to describe the most memorable activities organized by Ashyk Alem. The researchers obtained firsthand information on the barriers to inclusive education for children with special needs at local schools through two in-depth interviews with school directors. The interviews were unrecorded and anonymous to ensure that the directors would feel free to express their opinions without concern for their positions. School directors were selected because parents of autistic children who succeeded in placing their child into a mainstream classroom negotiated the placements in their schools with the directors. The researchers took notes, and then the interviews were transcribed. All the names of the children described below were changed to retain their full anonymity. However, the names of the schools that admitted children with autism and piloted inclusive education have not been changed. Parent Activism in Kazakhstan 53 The Country Context On September 16, 2011, while we were conducting research in Almaty, the former capital of Kazakhstan, the country celebrated the 20th anniversary of its independence. Over the weekend, the central square of Almaty (which means “City of Apples” in Kazakh) hosted an Apple Fest, a city fair, all-day music performances, and an impressive laser show in the evening . The festivities attracted crowds of people who came...