Keywords

Introduction

Ensuring the right to education for children with disabilities remains a challenge in Central Asian countries due to the Soviet legacy of separating children with disability from their peers and education in special educational institutions or boarding schools (Makoelle, 2020; Makoelle & Burmistrova, 2021; Rollan & Somerton, 2021). Despite the effort made by parents of children with disabilities to include their children in state schools, the resistance of teachers remains strong due to the Soviet legacy of special education and the lack of knowledge of the state school teachers on how to teach children with special educational needs (Lapham & Rouse, 2013; Makoelle & Burmistrova, 2021). There is a different dynamic in the implementation of inclusive education from state to state in Central Asia due to little or no understanding among the general public and educational professionals on the concept of inclusive education or how to develop it (Lapham & Rouse, 2013; Makoelle, 2020).

This chapter focuses on the right to education of children affected by nuclear tests in the Semipalatinsk region, Kazakhstan, namely how this right is ensured, and whether special measures are taken as a part of reconciliation processes after the closure of the nuclear testing site in the region in 1991. Special attention to the needs of children in education is explained by the historical, cultural, political, and economic aspects of a particular region. The Semipalatinsk region serves as an example where children have special educational needs due to the legacy of nuclear testing and subsequent economic and political crises following the collapse of the Soviet Union. Therefore, it is important to explore how three decades after gaining independence, efforts have been made to address the health issues of the population affected by nuclear radiation and the special educational needs (SEN) of affected children.

The inhabitants of the Semipalatinsk region (Northeast of Kazakhstan) were exposed to nuclear tests for 50 years between 1949 and 1989, as the Soviet authority selected this region as a test site for nuclear weapons. Although the exact number of nuclear bombs that were detonated is unknown, according to one source, around 450 nuclear and thermonuclear bombs were tested: 30 on the surface, 86 into the atmosphere, and the rest underground (Werner & Purvis-Roberts, 2006). All information regarding nuclear tests was hidden from ordinary people. All actions were controlled by the military-industrial complex and reported to Moscow directly. The military not only managed and controlled the nuclear weapons tested but also its impact on people’s health, animals, and nature (Atchabarov, 2002; Kassenova, 2022; Werner & Purvis-Roberts, 2006). According to existing data, more than 20,000 people went examined in the special medical organization known as ‘Anti-Brucellosis Dispensary Number Four’, and approximately 1.6 million people received abnormal doses of radiation (Kassenova, 2022; Werner & Purvis-Roberts, 2006). That was the human price for keeping peace between the USA and USSR in the Cold War. This price is still growing as the impact of radiation continues to affect the following generations.

Just before the collapse of the Soviet Union in 1989 and 1990, during the national campaign against nuclear testing in the region, politicians and civil activists of the Nevada-Semipalatinsk movement argued against nuclear testing because of the adverse impact of radiation on people’s health. However, it played negatively on the people’s psyche and fostered radiophobia and stigma against people of the region (Atchabarov, 2002; Kassenova, 2022; Stawkowski, 2016). The closure or renunciation of the use of nuclear weapons was the ideal international agenda for the newly independent Kazakhstan (Kassenova, 2022). As mentioned above, the paradox is that those vocal about this issue were the same people in power who silently observed these explosions during Soviet times. In 1997, the Semipalatinsk oblastFootnote 1 was merged into the East-Kazakhstan oblast and remained as such until 2022. Therefore, there is no separate data available on the ex-Semipalatinsk oblast for the last 25 years on education or health matters.

This chapter presents the findings of the research that aimed to explore the context of ensuring the right to education of children with SEN in the Semipalatinsk region. In particular, this chapter addresses whether the rights to education of children affected by radiation are respected in post-conflict Semipalatinsk region. The main argument of this study is that the special educational needs of children affected by radiation are not fulfilled as part of reconciliation or rehabilitation measures, so there is a missing generation of children with SEN in the region.Footnote 2 This chapter starts with reviewing existing knowledge delineating the theoretical framework and outlining the methodology. Then, findings and discussion are presented. In the end, it provides the conclusion and recommendations.

Literature Review and Theoretical Framework

Education, Social Justice, and Post-conflict Contexts

The term inclusive education emerged in the domestic law on education in 2011. As presented in Table 3.1, the definition of inclusive education has changed several times in the last ten years, and only in 2021, it was extended from education for children with special educational needs due to health issues (medical approach) to education for all children with special educational needs.

Table 3.1 Definition of “inclusive education” and “persons with special educational needs” in legal documents in the period 2011–2021
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The practice is different from the law on paper. Although there are changes in language about inclusive education, pre-service teacher preparation is still based on ‘defectology’ which is the special education discipline that was taught in the Soviet time, and which is based on the medical approach to support children (Makoelle & Burmistrova, 2021). The Soviet legacy of special education overshadows inclusive education as there are not enough teachers trained to work with children with SEN and current teachers in the state schools and preschool organizations are resistant to inclusive education, perhaps due to the lack of educational materials for children with SEN, and training and guidelines for teachers for working with children with SEN (Makoelle, 2020; Mussabalinova & Polat, 2023). Therefore, in Kazakhstan, inclusive education remains a goal while the majority of children with disability attend special educational organizations (see Fig. 3.1).Footnote 3

Fig. 3.1
A double bar graph of number of children who attended inclusive schools. The total number of children with developmental disabilities aged 7 to 18 is highest for Turkestan. The number of children with developmental disabilities who attended inclusive schools is highest for East Kazakhstan.

(Source National educational database, 2021)

Number of children who attended inclusive schools (classes) in Kazakhstan, 2021

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Therefore, reforms are not efficient in changing teachers’ and parents’ mentality and eliminating the stigma against children with SEN (Makoelle, 2020; Makoelle & Burmistrova, 2021; Nogaibaeva et al., 2017). The system is more agency and resources-oriented when the children’s needs are adapted to the available region’s resources. In Kazakhstan, the non-governmental sector plays a crucial role in the development of inclusive education and brings innovative, inclusive practices to the state education (Rollan & Somerton, 2021), but this practice is fragmented and not sustainable. Consequently, there are missing children with SEN due to a shortage of available services for parents and children with SEN from the beginning of the child’s life (Haar, 2022). School age starts from 6 to 7 years when a child must attend an educational organization in Kazakhstan. It is a time when those children with developmental delays who did not attend any early childhood educational organizations, and whose parents did not notice such delays, are recognized. Then, if there is no space at a special school or no special school exists in the city or village, a child with SEN is more likely to be recommended for home-schooling or boarding school. Therefore, isolation, separation from family, and stigma against children in Kazakh society remain strong among professionals and the rest of the population. In addition to this, people of the Semipalatinsk region live with radiophobia which is a social phenomenon constructed as the outcome of the campaign to close the nuclear test site (Atchabarov, 2002; Stawkowski, 2016, 2017).

According to the law ‘On social protection of citizens affected by nuclear tests at the Semipalatinsk nuclear test site’ (1992) and following regulations, the victims and current citizens of the region are eligible for (1) one-time paid financial compensation; (2) additional payment to a pension; (3) additional payment to salary for those who work and live in the region; (4) additional vacancy days for those who work and live in the region; (5) additional maternity leave; and (6) rehabilitation and medical treatment for adults and children if their disease is caused by radiation. These legislative measures were, however, nominal, lacked transparency, were postponed several times, and the amount of payment and benefits decreased over time. The law changed 13 times between 1994 and 2022, resulting in the reduction of the benefits package and the list of diseases that enables access to medical and rehabilitation benefits. In short, benefits are not very accessible, especially for children of the current generation.Footnote 4 According to the law ‘On social protection of citizens affected by nuclear tests at the Semipalatinsk nuclear test site’ (1992) and the list of diseases associated with exposure to ionizing radiation (2020), the policy related to the closure of the nuclear test site mentions nothing on education, neither on special conditions for children affected by radiation, nor on reconciliation measures, while the mental retardation is one of the diseases caused by radiation. The latter will be further discussed in the findings section.

The Framework for Analyzing Education in a Post-conflict Territory

The 4RS framework was applied as an analytical tool (Novelli et al., 2014). The flexible nature of the framework (Novelli et al., 2017) made it possible to analyze the collected data using its 4 dimensions: redistribution, recognition, representation, and reconciliation.

The 4RS framework enables the examination of the relationship between education and peacebuilding measures focusing on the ‘legacies of conflict’. Equal access to education is one of the indicators of the redistribution dimension that addresses inequalities. Children affected by radiation have special educational needs in services for ensuring equal access to education. This research provides some insights regarding ensuring the right of all children to education in the region. Sustainable peacebuilding in the context of the applied framework should be conceptualized ‘in and through’ education. Therefore, redistributive measures in education are also signs of reconciliation if such were taken. However, addressing inequality caused by the aftermaths of nuclear testing as part of the Cold War requires first recognition of such inequality in official discourse.

Recognition and representation are interrelated dimensions. Unlike conventional indicators or the ‘drivers of conflict’ such as cultural, religious, language, or gender inequalities, in this research, the focus is on special educational needs caused by health and environmental issues, namely the impact of radiation on children’s health and limited abilities to access education. The Semipalatinsk region was joined to the East-Kazakhstan oblast from 1997 to 2022. Therefore, the interests of the people affected by nuclear testing are barely represented in decision-making, decreasing the likelihood of their needs being recognized. Thus, all four dimensions of the 4RS framework are useful in analyzing data of this research and addressing the research question, although the conflict context of the Semipalatinsk region is not conventional as it was in other research where this framework was applied (Durrani & Halai, 2018; Novelli et al., 2017).

Methodology

The study uses qualitative semi-structured interviews. This method was ideal to address the research question. Practitioners, professionals, and civil activists who work with children or are related to the Nevada-Semipalatinsk social movement mentioned earlier were invited to participate in the research and share their vision of the research problem. The study received ethical approval from the University of Ulster.

Data was collected over two months, in September and October 2022. Participants were selected from four regions: Abai oblast, including villages and Semey city, Astana (capital), Almaty (ex-capital), and Karaganda (a city close to the Abai oblast). In total, 30 participants were interviewed, 13 civil activists, ten professionals from the education sphere, five medical professionals, and two social workers. Participants were recruited through official letters sent to local relevant departments within the local authority and through the author’s personal network. Being originally from the region and a victim of radiation, and speaking both local languages—Kazakh and Russian—enabled the building of trust with the participants. Only five interviewees used Kazakh, while the rest spoke a mix of Kazakh and Russian. The interview length varied from fifteen minutes to almost two hours. Younger participants were brief since they had limited knowledge of the topic. Other factors inhibiting interview discussion might relate to hesitancy to speak among public workers or the lack of research culture and experience. By contrast, the pain and will to speak out all that the participants kept inside for a long time encouraged more profound discussions. The average age of the participant is 45.

All interviews were audio recorded with the written consent of the participants. The research assistant, who is a Kazakh philologist, transcribed and coded all interviews in Kazakh and some in Russian. All texts were read twice and coded according to emerging patterns. Pseudonyms were given to all participants to protect their identities.

Findings

The main finding of the research indicates that children’s rights were not considered seriously in Kazakhstan, which is common in many states. However, the context of Kazakhstan is different, at least because it is a relatively new state that had to prioritize economic development. Therefore, the research problem is partially explained by the context or ‘conflict drivers’, which I discussed in the preceding two subsections. This structure allows readers to understand better the findings presented in the last subsection that focused on reconciliation measures and ensuring the children’s right to education in the region.

Representation and Recognition Issues in the Context of the History and Culture of the Semipalatinsk Region

According to participants, the victims of the nuclear tests and their problems related to the aftermath of the nuclear tests are forgotten.

They don’t talk about the landfill at all. As if nothing had happened. They even want to give land for use … 15 years ago, a scientist was constantly publishing her works that investigated the air and the earth and that there are heavy metals in the soil, the decay of which has already begun. But then they covered it all up. I don’t even know. Now they don’t talk about it aloud. (Bibigul -education sphere)

One of the reasons is that many people affected by radiation are already dead; another reason is that politicians hide the problems and play with statistics to minimize the number of illnesses caused by radiation. People are tired and pessimistic, with radiophobia deep in their minds.

The death of the closest people makes up for a time. This is probably an unfortunate example, but this is a wound since the middle of the 20th century, habituation has already occurred, and moral fatigue … Here I think that this should be a constant problem for our government .., people are tired. They cannot put forward demands if there is no agency. (Sovetkhan, civil activist)

…we get used to people from other regions being afraid of us. They say that it is better to avoid marriage with a woman of the Semey region. Shymkent, Atyrau, Zhambyl (regions) say so. Because it will affect the future generation… (Aizhan – social protection sphere)

…After the landfill, many residents were diagnosed with cancer. In the beginning, we were all worried. (Munira - civil activist, defectologist)

Participants expressed being unheard and reiterated their will to participate in the region’s development and tackling the local issues. They want to be heard as they think they know better the problems from the ground.

Everything has to be done from the bottom. Everything must be taken from the field. We must work together. (Zhannur, doctor)

Representation and recognition are interconnected dimensions. The data collected for this research shows underrepresentation and a lack of recognition of the needs of the people living in the region. The tension in the voice and the lack of trust in the government need attention and redressal before it is raised to the critical point of spilling over to open conflict.

Redistribution: Political and Economic Restrictions

The redistribution of resources and opportunities, as advocated by the 4RS framework, is the remedy for social injustice. Research participants expressed the inadequacy of state measures in such words as: ‘crumbs’; ‘very insignificant and miserable’; and ‘seven rounds of hell’. Parents of sick children feel like they are in hell as there is nobody to help within the state, and they are running from door to door but receiving nothing. It is the story of one of the research participants whose granddaughter had to switch to home-schooling due to a diagnosis of blood cancer at age 13 and whose parents could not prove a connection with nuclear testing while parents and grandparents lived in the village not far from the nuclear test site and are victims of nuclear radiation.

Access to education for children affected by radiation assumes the existence of special state services and resources. Therefore, prior to the redistribution of resources, recognition and representation of these children and their needs are required. The latter’s absence is explained by the former. The participants of this research confirmed that special needs in the education of children affected by radiation were not recognized so that there was nothing established as part of state policy to close the nuclear test site.

At the moment there is one Pedagogical medical psychological commission (PMPC).Footnote 5 We serve the population of the city of Semey, Abai district and Kurchatov … More than 4,000 children are registered with us, in Semey 105,000 children are under 18 years old, in Kurchatov more than 70,000 children, and more than 50,000 in Abai.Footnote 6 … at the moment the number [the queue for the consultancy] does exceed the record going two months ahead... (Perizat- education sphere)

now I hear that there is work being done regarding inclusive education, some classes [inclusive] are opening, but it was not ten -twenty years ago. (Munira, civil activists, defectologist)

... Now many [children with disability] are sitting in 4 walls [remain at home because they cannot go out, there are no services to carry them out, and they/their parents think that they are not welcome in society], and they are isolated. The system knows about these children. But, unfortunately, nothing is filled with human content [not child-centred approach]. (Rosa, civil activist)

However, in the first decade of independence of Kazakhstan, the situation was difficult due to political and economic crises in the state in general. According to one teacher, it was a time when even healthy children did not attend school. Participants shared that in the last ten years, the situation has improved in all three spheres: education, health, and social protection, as elsewhere in Kazakhstan. For example, an analysis of interviews with representatives of the education system showed that work on developing inclusive education is carried out in the region. Even in rural areas, teachers said that they develop their inclusive practice. Persons with disabilities receive wheelchairs, allowances, and social worker services at home. Social workers visit at home and work with children who the socio-medical commission recognized as incapable of studying in regular educational organizations. According to stories shared by specialists who provide social services for children with learning difficulties, working with a child at an early stage can contribute to their inclusion in the education system. In addition, due to the assistance provided by the social workers, parents can take their children out of home and not be ashamed of them.

Reconciliation: Children’s Right to Education

The findings above demonstrate that children’s rights to education in the region are fulfilled partially due to limited access to education, services, and resources. Data obtained during this research suggested that educational services are provided based on the resources that remained from the Soviet time. No investments were made to cover the special needs of children affected by radiation.

…boarding schools are overcrowded. The boarding school at the beginning was open for children with mental retardation…Now it is filled with children who have mild mental retardation... We are trying to be selective, but still, you understand [there is not enough space]. (Bibigul –education sphere)

Although the exact number of children affected by radiation is neither provided by the official dataFootnote 7 nor available in open access, one of the teachers who participated in this research confirmed their existence among the current young generation:

We also had a study at school about four years ago. According to children’s profiles, we identified that about 10 children in our school were diagnosed with a disability connected with nuclear tests. (Umyt—special school teacher)

Some participants mentioned that even when children with developmental delays or mental impairment are visited by a teacher at homeFootnote 8 or attend a school, they do not learn anything as the quality of such education is low:

Homeschoolers receive state benefits. Even if the parents understand that the training will not give anything, they are noted that the teacher comes and they receive this allowance. The teacher came, drank tea, and left, or just signed, or just called... Now this percentage of students at home is higher.., there is no quality [quality of education]. (Perizat—education sphere)

There is a woman 40 years old in our village; she is mentally impaired, and received seven years of education at school. She can’t read or write; she can only sign. I am in contact with her. She does not want to apply for pension and disability; she perceived it with hostility. Perceived as stigmatization. (Nina, civil activist)

The situation with the quality of education is worse in rural areas. As exemplified by the last quotes, the quality of education for children with special education needs is not good to the extent that children who attended school cannot read or count after seven years of school attendance. In rural areas, there are no specialists to work with children with SEN, especially with young children (under three years). Parents, having the resources, take their children daily to the city for 100 kilometers to study. In rural areas, it was also noted that there are no roads and transportation to schools for children with special educational needs. Notably, the need for additional nutrition for children has been identified. According to teachers, children are tired due to region-specific anemia and a lack of vitamins. Thus, the issue of ensuring the best interests of the child in obtaining education and communication skills remains crucial, especially in rural areas.

Due to a lack of family support, some children with disabilities are abandoned. However, having a family is important for a child’s development and ensuring his or her right to education (Houston, 2017; Mendes & Ormerod, 2019; Soriano, 2005). Participants noted that if a child has a family, then the child has a better chance of staying alive and getting some kind of education. Therefore, the family, namely the parents, need support from the state. According to respondents, during the period of perestroika and unemployment, the antisocial behavior of parents contributed to the abandonment of children with disabilities. At the same time, the participants noted that parents are also stigmatized and therefore, although children survive and receive education, they are not always socialized, highlighting the need for supporting parents and the prevention of stigma to develop an inclusive society.

I’m getting old; I’m losing my strength. Tomorrow my child will not be able to provide for his family. I can’t earn big money because I’m attached to a child. He went to college but failed to work in his specialty; he lives on benefits… I can’t trust anyone with my child. I can’t let my child live without me. Perhaps this is my omission. We are attached. We are forced to be like this. Possibly, I need a psychologist. (Munira, civil activist, defectologist)

Work in this direction is underway, but there is not enough information for parents at the healthcare level. At the same time, it is noted that in rural areas, parents and children are better supported due to strong community support, while in urban locations, the work of the community is not well-developed.

Overall, the findings confirm that the region was abandoned in all spheres, including education. This was recognized by Kazakhstan’s President Kassym-Jomart Tokayev in September 2022 when he met with citizens of the re-established Abai oblast (ex-Semipalatinsk region). He said that ‘the infrastructure of the city of Semey is extremely worn out. There is no hot water in summer, and in winter, the houses are not heated’ (Kazinform, 2022). In addition, he invited local businesses to contribute to the revival of the region, including the construction of schools, medical organizations, and other social facilities (Official website of the President of the Republic of Kazakhstan, 2022). In line with the President’s speech, the Ministry of National Economy (2023) in January 2023 presented the development plan for the region, which included the building of six small schools, extensions to existing schools, a schoolchildren’s palace, a boarding school, as well as nine kindergartens and three children’s camps. Therefore, the restoration of the region’s status gives hope for reconciliation measures. Ensuring children’s right to education in practice requires state services that help parents to develop their children’s full potential. Early diagnosis and intervention are the key measures that are not developed in Kazakhstan (Haar, 2022). The development of such services will help Kazakhstan to move away from the Soviet practice of separating children with disabilities and stigmatization to the inclusion of these children in society from early childhood. Considering the history of the ex-Semipalatinsk region, children’s needs due to radiation and stigmatization should be recognized first and then addressed through access to quality, inclusive education.

Conclusion

The findings of this research demonstrate that after the closure of the Semipalatinsk nuclear test site in 1991, Kazakhstan followed a ‘trickle-down’ vision of peace (Castaneda, 2009, cited in Novelli et al., 2017) when the market, security, and so-called democracy were prioritized. Given the priority to the latter, Kazakhstan in the 1990s and the present day ignores the needs of children affected by radiation in practice, although on paper (in law), Kazakhstan declares compliance with the UN Convention on the Rights of the Child and the Rights of Persons with Disabilities.

The economic crisis in the region after the collapse of Soviet Union negatively affected people who were already suffering the consequences of radiation. Poor nutrition, poverty, and unemployment contributed to the deeper marginalization of affected children (institutionalization, low quality, or lack of education). Stigma and radiophobia among people are evidence of the lack of reconciliation measures, including engaging with education in the region and across the country. Not all children affected by nuclear tests have access to education or quality education. Therefore, there is a missing generation of those children who remained in the four walls or died in the institutions.

This research shows an underestimation of the role of education in sustainable peacebuilding. It also proved the effectiveness of the 4RS framework as an analytical tool when researching education’s role in a post-conflict region. It revealed the failure of the state to meet the needs of the children affected by nuclear tests. While the problem is not recognized due to the lack of voice of representatives in decision-making, there are no redistributive or reconciliation measures adopted. For 25 years, the region and the people were neglected. As the political situation changed in 2022, the rights of the people in the region have received attention raising the hope for adopting reconciliation and redistribution measures for children affected by radiation. The post-conflict case of the region should be taken as a learning case not only for Kazakhstan but for the global community.

The political change, however, is recent and coincides with data collection. Therefore, any positive outcomes for affected people are yet to materialize. Although time constraints limited the scope of the current study, this research opens the door for other research in this realm, especially since it would be useful to conduct a quantitative comparative study to identify the number of children with SEN related to radiation and the proportion of those who have access to education and included in society. Such research requires more time, funding, and engagement with key stakeholders and policymakers to obtain data.