Learning to See Invisible Children:
Inclusion of Children with Disabilities in Central Asia
Firuza always knew that her son had the ability to succeed in school. Indeed, she knew that without a rigorous education, he would be relegated to a life of poverty, and without the financial support of her children in her old age, she too would struggle to survive. But the director of the village school, outside the Tajik capital, Dushanbe, refused to allow her son, Umed, to study with his peers. The only thing that distinguished Umed from other boys his age was that he needed assistance walking long distances and sometimes did not have full control of both hands. Four years later, Umed is thriving in the third grade of his village school, earning top marks in all his subjects and maintaining good relationships with his classmates.
Umed’s inclusion in mainstream Tajik schools was not accomplished without effort. Indeed, Firuza had to overcome numerous barriers to achieve equal opportunity for her son. Her case is further distinguished by the specific means and methods of her achievements. As a single mother lacking much formal education and without financial support, she was able to circumvent traditional gender expectations and the social shame and stigma of having a child with disabilities in rural Tajikistan. In addition, with the assistance of Tajik civil society organizations, she learned how to navigate Tajik bureaucracy and gained a vocabulary of basic rights in order to advocate for her child. Beyond calling appropriate attention to the heroic dimensions of her efforts, her case also highlights the remaining social and structural obstacles to inclusion in Tajikistan and the potential of Tajik civil society organizations and individual parents to effect social transformation from within. Firuza demonstrates how even when significant challenges exist, parents can and do have the opportunity to work on behalf of their children and are finding real success.
Here we examine how this one woman overcame cultural and social obstacles, including Tajik gender norms, family influences, social stigma, and institutional and attitudinal barriers, to enroll her son in primary school. This case study offers potential lessons and avenues for inclusion and helps define the remaining challenges for education for all in Tajikistan. We first discuss some initial problems related to issues of shame, stigma, and gender expectations posed by cultural norms in rural Tajikistan and how Firuza was able to marshal culturally appropriate means to circumvent them. We then investigate the institutional and attitudinal barriers of educational inclusion that Firuza encountered and highlight the methods she used to work them in her favor. Lastly, we consider the remaining challenges Firuza and Umed may face as Umed progresses through school and beyond.
Situated in the mountains of Central Asia, bordering Afghanistan, China, Uzbekistan, and Kyrgyzstan, Tajikistan is the poorest of the formerly Soviet Central Asian republics, with a per capita income of U.S. $700 (World Bank 2011: 12). Besides small cotton and aluminum sectors, the economy and Tajikistan’s population of approximately 7 million, 73 percent of whom live in rural areas, are almost entirely dependent on remittance income from migrant workers living in Russia and other CIS countries. In 2010 Tajikistan was the most remittance-dependent economy in the world (Mohapatra, Ratha, and Silwal 2011: 3). Education is compulsory for four years of primary school, generally from age seven, and five years of basic education, up to the age of 16 (OECD 2009: 193). State expenditure on education is low (3.8 percent of GDP) and inadequate to meet the needs of Tajikistan’s young and fast-growing population (UNICEF 2009: 1). Though the government has taken significant steps by enacting legislation in support of inclusive education and equal rights with respect to education, specialized institutions are still the primary means of delivering educational services to such children (OECD 2009: 215), and Tajikistan’s chronic infrastructure problems, coupled with a medicalized approach towards disabilities, continue to hamper children’s access to educational opportunity.
Gender, Shame, and Stigma, and the Tajik Family
Beyond common difficulties encountered in other post-Soviet spaces in achieving education for all and full inclusion of children with disabilities in educational institutions, issues of shame, social stigma, and challenges posed by standard gender norms stand in the way of achieving educational equity for children with disabilities in Tajikistan. Issues of shame and stigma related to having a child with disabilities are, of course, not unique to Tajikistan. Indeed, similar factors inhibit education for all in diverse environments across the greater Middle East, South Asia, and Central Asia (Brown 2005, Mitchell and Desai 2005).
When Umed was born, there was little indication that he or his family would have difficulties. But at about the time her son was a little over a year old, Firuza began to notice that he had difficulty with movement in his legs and arms. She and her husband took him to specialists in Dushanbe, the Tajik capital, where he was initially diagnosed with polio. Later diagnoses pointed to cerebral palsy as the likely cause of his difficulties. Shortly after, her husband went to work as a migrant in Russia and rarely ever sends remittances home; approximately five years later, he still has not returned.
Misdiagnosis and the structural challenges of the post-Soviet Tajik medical establishment were not the only obstacles. Firuza’s de facto estrangement from her husband left her dependent on her husband’s relatives in the village. However, they too broke off contact and left her without sufficient financial means and support, implicitly reacting to the shame associated with having a child with disabilities in their family. Thus the result of Umed’s (mis)diagnosis was ostracism from her marital family.
In traditional Tajik marriages, the new bride leaves the control and protection of her natal family and becomes a part of her husband’s family, falling under the control of her husband’s male relatives (Harris 2004). For Firuza, the pressures of conforming to traditional Tajik gender ideals were perhaps even more pronounced. She and her husband’s family were originally from the Garm region in the mountains of northern Tajikistan, an area of more conservative values and traditional gender expectations (Harris 2004, Heathershaw 2009). In her own words, she had always been very submissive and rarely ventured outside the walls of her family compound prior to her marriage. And even then, she attended school only up to the fourth grade. Firuza says, “I hadn’t seen any of the city [Dushanbe]. The first time I went out [with Umed], I didn’t even know how to go by bus.” Her husband’s relatives in particular were pleased by Firuza’s modesty prior to the birth of her son. However, the birth of a child with disabilities changed her social status and threatened her husband and his family’s “honor.”
Many traditionally minded Tajiks maintain a folk belief that congenital abnormalities are the result of the birth mother engaging in sexual relations outside of marriage or other behavior considered “antisocial.” Thus the community often sees a child disabled from birth as “evidence” of such behavior. The community also often concludes that the males in the child’s family have lost control of the birth mother, be she their wife, sister, or daughter. This perception is severely damaging to Tajik concepts of male honor (Harris 2006). According to Firuza, her virtual abandonment is her husband’s response to this potential shame, and his remaining in Russia prevents him from having to face this situation.
One parent of a child with disabilities in Dushanbe likewise said:
Maybe five percent of children with disabilities study in school, because in the villages they are ashamed. They think that if they see my child, no one will marry my daughter. I would tell them, “Look, I have a disabled child. Look, my child reads. You won’t always be alive. The child will need to work. You think your other children will look after your child? If he can read, he should, so that when he gets older he can do some work. He can get married. If he stays at home, all of his abilities will go away.” The problem is the parents. The children are always agreeable. They want to be together with healthy children, but the parents are ashamed.
While her husband’s family has provided Firuza with a place to live, albeit in extremely tenuous circumstances with the possibility of eviction always looming, they offer little other support, financial or otherwise. The primary determinants of Firuza’s precarious financial situation, her social isolation, and Umed’s exclusion from the local school were due primarily to traditional Tajik issues of shame and family stigma and traditional Tajik gender norms. However, cultural factors were not alone in preventing Umed from achieving full social inclusion. Perhaps even more daunting were potential institutional and structural obstacles to Umed’s attainment of educational opportunity.
Institutional and Attitudinal Barriers to Inclusion
By the time Umed had reached school age, Firuza had resigned herself to the fact that Umed would never enter school. However, a teacher at the local school encouraged Firuza to enroll her son. She said that Umed was capable and smart and that she would help Firuza take him to the village school. When the new school year began, Firuza finally worked up the courage to take him with the other children entering the first grade. She took him every day for two weeks, not fully expecting him to be accepted, until the school director eventually told her that Umed could not study with the other children.
The school director explains his initial reluctance to admit Umed as a pupil in terms of issues of responsibility:
The school is a place for healthy children. If they are healthy, we’ll accept them. Our pedagogy is for healthy children, not for special children. Our teachers aren’t prepared to teach disabled children. They’ve been trained in standard pedagogy and psychology. It’s possible that we would accept other children, if they have documentation from doctors. Here it’s like an experiment [with Umed]. Teachers ought to receive a larger salary if they are also to educate disabled children. It makes a difference how much the children know. Parents have to have permission. They try to make it the responsibility of teachers. The law says the school is a place for healthy children, the healthy. We have special places for disabled children. As long as we have a recommendation from a doctor and they aren’t too disabled, we can accept them. Someone must take responsibility for the child. He may fall. He may get hurt. Of course, it’s not always like this with Umed. [In this case], we got advice from doctors. They took the responsibility.
The director declared that Umed could not study until he received written permission from the district office of the Ministry of Education that would absolve him of any responsibility if other children became ill as a result of his attendance or if Umed fell. Furthermore, he maintained that if Umed was injured while on school property, the director would be to blame. For the director, Umed was not “healthy,” and his school was a place for healthy children. For children like Umed, there were special boarding schools.
Unwilling to accept the director’s refusal, Firuza sought to obtain permission from district education officials. However, her conservative in-laws would not allow her to navigate the sometimes arcane rules of the Tajik bureaucracy alone, and they were unwilling to help her themselves. Firuza turned to her father. He agreed to go with her to the district office of the Ministry of Education. Through a family friend who worked in the office, they discovered that they needed to take Umed to be evaluated at the Psychological-Medical-Pedagogical Commission in Dushanbe. Firuza’s father balked at taking her to the office and told Firuza to forget about it. Reacting to the potential for shaming talk and gossip, he says, “When the council didn’t give her permission and told her to go to the PMPC, I said no. It’s not good if I come down here and pick her up. They’d say, ‘Why are you doing that?’”
Her father also says he did not believe that the commission in Dushanbe would rule favorably for her and did not want her to be disappointed at an unfavorable result. He felt that if therapy were required, they would not have the means necessary to take him to therapy visits or to other necessary consultations. Determined to enroll Umed in school, Firuza broached traditional gender norms and decided to go against the wishes of her father and husband’s family and went to the commission.
The PMPC acts as the primary means whereby parents and children with disabilities interact with various organs of the Tajik government, though no fewer than three other bodies also have some oversight of disabled persons’ access to state benefits, work opportunities, or other social services (OECD 2009: 190–191). At its core, the PMPC serves the purpose of providing consultations to parents of children with disabilities. However, the PMPC more prominently acts as the primary gateway for parents of children with disabilities to gain access to state benefits and the necessary documentation required for almost any interaction with Tajik officialdom.
After PMPC staff examined Umed, they initially recommended him for home study due to his difficulties in walking without assistance. They then referred Firuza to her local education commission, which would bear the responsibility of sending teachers to his house to teach him at home. Firuza emphatically refused their recommendations. She knew that the level of education Umed would receive would be subpar if indeed the commission sent any teacher at all. Furthermore, she found it absurd that he should study at home, when the local school building was next door to their apartment building. While he needed assistance walking to school, which she was willing to provide, he needed only to walk down the stairs of their apartment building and into the school yard. Firuza wanted Umed to go to school with other children. So Firuza began to take Umed three times a week to the commission for physical therapy.
Beyond the consultative, therapeutic, and diagnostic aspects of the PMPC’s work, the PMPC’s offices also act as a networking hub for the greater Dushanbe special-needs community, perhaps one of the only spaces in which many parents of children with disabilities have the opportunity to speak and compare notes with one another. Officials at the PMPC referred Firuza to the Association of Parents of Disabled Children. The association was founded in 2007 by the parents of a child with special needs who sought to inform other parents of their legal rights and to promote the integration of children with disabilities into Tajik society. With the support of the Open Society Institute Assistance Foundation office in Tajikistan, they consult with parents on their rights before the law, offer support for parents in managing issues related to depression, and inform broader Tajik society about the association and its activities through various media and public events. They also hold monthly seminars on topics beneficial to parents of children with disabilities and offer weekly tutoring to prepare children to enter mainstream schools. Sabohat, the founding director, says:
There are about 3,000 parents of children with disabilities registered in Dushanbe. When I founded the center, not one of them knew their children’s rights. No one knew their own rights. My husband is a lawyer, so we explained to them their rights. Now 50 [the members of the association] know, but the other 2,950 don’t know. Society doesn’t see our children. That’s why they don’t accept them. If we brought them out, they would accept them. Parents don’t want to send their children to special boarding schools. They want them to stay with them. We say they have the right to study in the school.
The Association of Parents of Disabled Children inculcates parents with a discourse of rights and the law, even though they find that educational officials, teachers, and school directors are unaware of legislation regarding children with disabilities. Parents insist on a discourse of legal rights specifically in regards to a draft law on the “National Concept of Inclusive Education for Children with Disabilities in the Republic of Tajikistan for the Period of 2011–2015” adopted in April 2011 (Ministry of Education 2011).
This recent initiative has empowered parents in their interaction with educational officials. The parents speak of its importance in defining the Tajik state’s approach to educating their children and its rhetorical capacity for convincing school directors of their children’s educational rights. The document includes few action points and still fewer items of tangible improvement and instead works as a framework for future government action, pointing towards directions for future improvement. In spite of these limitations, the psychological impact of state endorsement is a significant, positive step in including children with disabilities in the Tajik educational system, as parents now can point to governmental support for their actions. The more significant challenge is that educational officials, school directors, and teachers are unaware of its enactment. The Ministry of Education has neglected to educate those under its jurisdiction about these children’s legal rights and schools’ responsibilities for accepting children like Umed. As such, the Association of Parents of Disabled Children sees public education as a vital component of what it does. Sabohat says that one of the main goals of the association is “the integration of people with disabilities into the community by informing parents and informing society.”
Firuza took full advantage of the PMPC and the advice and guidance of the parents’ association. She attended their seminars on rights and navigating bureaucracy in addition to taking Umed to regular school preparatory lessons. According to others at the parents’ association, what distinguished Umed from many of the other children who gathered at the association was that he was mentally “well.” The discourse of “wellness” specifically in regards to mental ability is what other parents believe allows Umed to integrate and be included in standard schools, unlike children with more severe disabilities. Thus beyond the legal sphere, they reframe the discourse of “health” that the director deployed in his tactics to prevent Umed from attending school. One parent says:
The director said, “The school is for the healthy. He’s not healthy.” He said that Umed couldn’t walk independently. “What [would he do] about the snow?” We came and introduced the children to Umed. We said, “He’s like you. He’s healthy. He’s smart. He just can’t walk well. You should help him carry his books, help him go to the bathroom.” A few months later, when we went, we found that most of the students had become friends with him.
From the time of Umed’s diagnosis as a toddler until the present, discourses of “health” have figured prominently in the ways the state apparatus, and even other parents, have interacted with him and his mother. This medicalized discourse of disability pervades the entire educational system, in a parent’s encounters with the PMPC, what other parents say at the parents’ association, and the school environment. The school director explains his initial reluctance to accept Umed as a pupil by saying that the school is a place for “healthy” children. Furthermore, his stated worries about Umed’s attendance are all related to a medical/health framework. For example, he says Umed may expose the other children to potential contagions or that Umed’s “condition” may cause him to fall and get injured at school. His duty as school director, as he sees it, is to preserve the school environment for “healthy” children, while he believes that special boarding schools are responsible for managing Umed’s educational achievement and health. In addition, the primary governmental conduit for parents of children with disabilities works within the same discursive field. Rather than pushing Firuza to help Umed achieve his observed educational potential, the resources the PMPC provides are primarily medical, diagnostic, and therapeutic. While many of the PMPC’s clients’ needs may fall within this mandate, for children like Umed, the PMPC’s diagnostic resources do little to assist parents in attaining any measure of educational equity for their children.
Interestingly, parents at the parents’ association work within, but also complicate, this discourse of health. While school directors or officials at the PMPC may insist on categorizing their children as outside the “healthy” group, parents often speak of how their children are indeed “well” and thus by extension capable of participation in mainstream Tajik schools. That is, for many parents, specifically with respect to their children’s attendance in local schools, health becomes equated with mental ability. If a child has the mental capacity to take part in schoolwork alongside his peers and without special accommodations, then the parents judge the child to be “well” irrespective of any physical limitations. It is precisely these factors that other parents at the association credit for Umed’s success at inclusion in his village school. While the parents’ re-appropriation of this medical discourse of health may enable them to position children such as Umed towards academic success, this discourse and its tactics may also limit the potential for children with more severe mental or physical challenges to enter their local schools.
After the director and assistant director of the parents’ association helped prepare her, Firuza took Umed back to the school at the beginning of the next academic year, armed with a discourse about their rights, paperwork from the PMPC, and the force of argument. Still, the director refused to accept Umed as a pupil and deflected their arguments. Instead, he claimed that the documentation that Firuza received from the PMPC and the preparation for school Umed had completed did not give him permission to enroll at this specific school, but just a school in general. And thus, he said, he was not obliged to accept Umed as a student at his school. When Firuza returned with the director and assistant director of the parents’ association in tow and threatened the school director with legal action if he did not enroll Umed in school, he finally relented. However, their fight was not over. The school director responded by placing one additional obstacle in their path; he moved Umed’s first-grade classroom to the second floor of the school.
In the end, the director conceded. The combined pressure of the parents’ association, Firuza, and the assurances of a friendly teacher convinced the director to finally accept their demands. Yet one further attitudinal barrier still had to be overcome. While Firuza had the support of one teacher, not all of the school’s faculty or pupils supported her efforts. One specific teacher singled out Umed for extra punishment due to his handwriting. Umed’s disability at times prevents him from having full control of both of his hands. After Firuza found out, with a new assertiveness cultivated at the parents’ association, she quickly came to the school to complain about her son’s treatment. She says:
One day, Umed came home crying. I asked him, “What happened? Did you fall?” He said, “No.” “Why are you crying?” His classmate said that the Russian teacher hit him. I went to the teacher and said, why did you hit Umed? She said, how did you know? I said, “Why’d you hit him?” “He couldn’t read and write Russian.” She apologized to Umed. Since then, no teachers have hit him. There haven’t been any problems in school.
In Firuza’s case, the parents’ association provided the primary means for her to gain assistance in enrolling her son in school. Once she had chosen to circumvent the strictures of her husband and her natal family’s wishes, the parents’ association was the forum that allowed her to gain the assertiveness, legal empowerment, and emotional and logistical support necessary to follow through on her initial plans to put Umed in her village school.
Firuza’s efforts to enroll her son in her village school succeeded, and Umed continues to outperform his peers academically, consistently receiving top marks in all of his subjects. Though Umed has seen success in his schoolwork and in relations with his schoolmates, he still faces further challenges as he progresses through school. In the Tajik educational system, a teacher remains with the same pupils from the first grade until the fifth grade. Afterward, students rotate through multiple subject teachers yearly. Firuza argues that the compassion and understanding of his current teacher have given him an environment in which he can thrive. Likewise, his teacher says, “If new teachers are strangers, there will be problems in the future. They have to be compassionate to him. I didn’t want him to be separate.” Firuza maintains that her efforts are not over.
She will have to endeavor each year to provide Umed the opportunity to study with his classmates. Beyond that, Firuza worries for her son’s future after school. Even if he makes it through graduation in the village school, what does his future hold? Limited economic opportunity in Tajikistan forces up to a third of the Tajik workforce to migrate to Russia to seek work, most of it in construction and other manual labor (Mohapatra, Ratha, and Silwal 2011). When he is finished in school, Umed will not be able to work as a migrant laborer in other CIS countries. Firuza says:
He needs to study mathematics, so he can be a banker, for instance, or even a diplomat. Whatever it is he wants to do, he should do. I want him to do everything. I’ve done so much for him. I want to take him to the end. I didn’t want to put him into a boarding school. He will go forward.
Firuza’s success in putting Umed in school illustrates how traditional gender norms, familial stigma and shame, and even some issues related to poverty can potentially be overcome with determination and the assistance of Tajik civil society organizations and do not necessarily have to act as social determinants of a child’s educational opportunity. However, numerous institutional and attitudinal barriers remain.
In this instance, the school director still believes that Umed is a unique case, and inclusion of other special-needs children in his school is far from certain. Indeed, he is still concerned about his and his school’s responsibility towards such children. He and many other rural school directors are not aware of the draft law on inclusive education and the discourse of children’s rights with respect to equal educational opportunity. While the school director’s objections may seem without substance and merely rhetorical resistance, and while the corporal punishment by Umed’s Russian teacher may seem particularly cruel, the fact remains that broad public education about the nature of disabilities is critically absent. Beyond the shame and stigma attached to families who have children with disabilities, public discourses of health come to the fore. Indeed, the school director’s insistence that Umed’s cerebral palsy may be contagious and that his presence in the classroom may put other children in unnecessary harm indicates that broader public education is necessary.
Further, while Firuza’s efforts resulted in her son attending the local village school, there still remain significant challenges to his full inclusion in broader Tajik society. It is yet to be seen how he will fare in subsequent grades and after graduation. His grandfather says:
A lot of people still say, enough already [don’t keep him in school]. This isn’t fortune-telling. It’s true if there’s help from somewhere. We’ll help him as long as he needs it. He has to succeed. We’ll help him, but he has to try.
While he has the support of his mother and her father, Umed still faces an uncertain future. Many of the recommendations of the OECD 2009 report on students with special needs and people with disabilities in Tajikistan have yet to be implemented (235–244). New legal frameworks have benefited specific actors with knowledge of their enactment, such as Firuza and other members of the parents’ association. However, their implementation still lags, as educational officials, school directors, and teachers lack knowledge about what the law entails and the skills to uphold its provisions. Furthermore, in the post-Soviet era, the state’s medicalized approach towards children with disabilities continues to inhibit these children’s participation in the educational system, even as some parents like Firuza are able to redeploy its rhetoric. The determination of individual parents like Firuza has resulted in laudable but numerically limited results. Sabohat, the director of the parents’ association, says the association was successful in enrolling 18 children in mainstream schools this past year, but thousands of other children remain outside the bounds of educational institutions, and the Dushanbe PMPC estimates that it has knowledge of fewer than 10 percent of the children with disabilities within its geographic jurisdiction. Firuza’s case illustrates how barriers to inclusion can be overcome, but, as Firuza argues, the journey to educational achievement for all in Tajikistan has only just begun.
This material was reprinted with permission
It was originally published in:
Learning to See Invisible Children:
Inclusion of Children with Disabilities in Central Asia
Available in print and Kindle versions
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This piece is by Benjamin Gatling and Manzura Juraeva. “Tradition, Stigma, and Inclusion: Overcoming Obstacles to Educational Access in Tajikistan,” is taken from the recently published Learning to See Invisible Children: Inclusion of Children with Disabilities in Central Asia (edited by Martyn Rouse and Kate Lapham). The volume is released by Central European University Press and is available from the publisher’s website and in print and Kindle editions from Amazon.com.
A few words on this book: The path to inclusion for children with disabilities and other special education needs is long and complex. It has been claimed that inclusion is not a destination, but a process of increasing participation and reducing exclusion from the culture, curriculum and community of mainstream schools. This volume chronicles the journey toward greater inclusion of children with disabilities in Central Asia. Setting out upon this journey is an acknowledged policy goal in Kazakhstan, Kyrgyzstan, and Tajikistan so that all children are to participate in education, but it raises many questions and quandaries. It stirs the ghosts of social norms and traditions from the past that differ from place to place, even within the former Soviet Union. Central Asia presents particular challenges because of the economic, social, political and educational upheaval and disruption that has affected the region in the past two decades. These six case studies document the progress and challenges along the way through the stories of specific children, families, schools, and organizations across the region with the goal of keeping inclusion on policy agendas and in public discourses. It is a resource for scholars of the region, education researchers, and practitioners alike.