Doctor of Philosophy
Comparative and International Education
This dissertation explores the relationship between empowerment and social capital formation among mothers of children with disabilities in Tajikistan as a result of their participation in parent associations. Mothers of children with disabilities in Tajikistan face extreme social stigma because of traditional beliefs that their child’s disability is a reflection of their own sinful behavior. This results in a wide variety of overt discrimination for both mother and child. This can include institutionalization of children from birth, withholding medical care at birth or in early childhood, purposefully mislabeling a disability as “birth trauma” in hopes of protecting the mother, and hiding children with disabilities at home. For the mother, consequences can include limited marriage prospects for her other children, divorce, significantly reduced social status, and outright abuse within her marriage family or her birth family if she is forced to return to them following a divorce. The Soviet legacy of defectology reinforces this marginalization by framing disability as a defect within the child that requires correction through specialized services and segregated schooling in order for later participation or inclusion in broader society. Furthermore, formal public provision of specialized services in Tajikistan has largely disintegrated in the economic deprivation following the disintegration of the Soviet Union and the chaos of the civil war.Within this context civil society organizations concerned with women’s health and international organizations, including the Open Society Foundations, have sought to provide support for mothers of children with disabilities. In hopes of helping them through post-partum depression and the psychological pain of isolation, they have supported group therapy and self-help groups. Several of these support groups, some with support from the Open Society Foundations, formed associations of parents of children with disabilities in 2007-13 and then a national Coalition of associations in 2014. The original goal of the association was to continue to support parents psychologically but also to provide services, like physical or occupational therapy, for children. It has also enabled parents to learn as much as possible about their children’s disability, collecting or pooling resources to purchase equipment, and developing community-based service delivery. When little is available publicly and services are created from scratch, there is significant space for innovation, which can be a great advantage. However, this also requires a great deal of motivation, self-confidence, and assertiveness from the initial group of participants to develop these models and continued outreach to the community to ensure their sustainability. Together at the national level and individually within their own communities, they advocate for access to education, healthcare, and social benefits as well as working to create a more positive view of disability among the general public.In the face of such huge barriers that include social stigma, discrimination within their own families, poverty, and lack of services, how have these women become empowered advocates for themselves and their children? This research develops three cases studies of parent groups in different parts of Tajikistan (Dushanbe, Khujand, Bokhtar) and with varying profiles (autism, general disability) in addressing this central research question. Building on the literature on empowerment and social capital formation in the fields of community psychology and international development, this dissertation explores the relationship between empowerment and social capital that grows from crisis or need to gaining knowledge through support from others. The objective is examine whether and how such partnerships, in turn, lead to increased confidence among women and a desire to work together in support of others, while nurturing a growing feeling of self-worth and self-efficacy.The three cases were developed using qualitative research methods, including interviews and focus groups with association members and key informants, observations of activities within the parent groups, and analysis of documents produced by the groups. Field research was conducted during the summer of 2015. Common themes that emerge from these cases include the challenges of organizational development, especially maintaining the spirit of a parent association as the founding mothers become increasingly professional in their approaches to service delivery, the importance of public events in addressing the stigma associated with disability, and a strong desire to include children with disabilities in broader society through education. Although all public services are important, education is most likely to be available in every community through local schools. It is also likely to be one of the more difficult for children with disabilities to access because of the Soviet legacy of education segregated by disability type. In Tajikistan, the special education system is not readily accessible because there are few schools in operation. Yet in local schools, teachers have little or no training in inclusive education and do not feel prepared to include children with disabilities in their classrooms. This point of interaction between parent and teacher, family and school is a critical test of the parent association’s ability not only to advocate for access but to develop the relationships and provide the support to make access meaningful and sustainable.This research contributes to several bodies of literature. Although there is an existing literature on social capital formation among parents of children with disabilities, most studies focus on North America or Western Europe. Tajikistan is a severely under-researched geography, but even in the broader context of developing world similar studies are rare. In addition, this research brings together literature in fields that include community psychology, social work, political science and development studies, and sociology to develop a cross-disciplinary model of empowerment. Finally, this dissertation contributes to research on civil society development and participation by focusing on the phenomenological relationship between social capital formation and empowerment through participation in formal (registered NGOs) and informal associations.
Lapham, Katherine, "Redefining the Experience of Raising a Child with Disabilities in Tajikistan" (2018). Theses and Dissertations. 4298.