Stigmatization associated with disability and special education: The experiences of Japanese parents of school-aged children with disabilities

• In Event: Highlighted session: Inclusion, representation, and education

Proposal

Relevance of the study:
Stigmatization associated with disability and special education services can exacerbate the challenges experienced by parents raising school-aged children with disabilities. Using the Japanese case as an exemplar, this study considers how stigmatization affects the school experiences of parents of children with disabilities and their children. Stigmatization can be directed not only to children with disabilities, but also their parents (Goffman, 1963). The examination of parents’ understandings of disability and stigmatization is important, as they affect their children’s access to special education and other services that are necessary for educational success of their children. Across cultural groups, parents of children with disabilities report blame for “bad parenting” (Blum, 2015), feelings of shame (Sato et al., 2015), and others’ negative comments (Gray, 2002). Some parents also report social isolation (Francis, 2015), reluctance to engage with professionals providing services for their children (Koro-Ljungberg & Bussing, 2009), and hence concerns about their children’s development (Authors, 2017).

This study approaches Japanese parents’ perceptions of their children’s disabilities, stigmatization, and special education services sensitized by concepts from developmental cultural psychology (Miller, Hengst & Wang, 2003), including “universalism without uniformity” (Shweder & Sullivan, 1993). Disability and stigmatization are common issues across diverse cultures ["universalism”], but cultural groups vary in how stigmatization affects parents of children with disabilities and their children’s school functioning ["without uniformity”] (e.g., Jegatheesan, 2009). We particularly focus on relatively milder cognitive and behavioral disabilities, such as learning disabilities, Attention Deficit Hyperactivity Disorders, and high-functioning autism spectrum disorders. Children with these disorders are on the boarder of “having disabilities” and “typically-developing.” Thus, parents may choose to conceal their children’s disabilities to avoid stigmatization (Goffman, 1963; Minow, 1990). Parents’ such decisions reflect cultural understandings of disability and associated stigmatization. Japan is an important case to examine parents’ responses to stigmatization, in part, because Japanese people are generally socialized from childhood to be particularly sensitive to negative meanings associated with being “different” from others (Kuroishi & Sano, 2007). Indeed, only 1.6 % of Japanese children receive special education services for mild cognitive and behavioral disabilities (Ministry of Education, Japan, 2016). In contrast, about 8% of U.S. children receive services for these disabilities (National Center for Education Statistics, 2013). Perspectives of Japanese parents can provide insights into any risks their children’s differences pose for stigmatization. Our aim is to stimulate innovative ideas for stigma-sensitive strategies to support parents and consequently their children with disabilities at school through the examination of the experiences of Japanese parents. Research questions of this study are: How do Japanese parents navigate stigmatization directed towards their children and themselves? What support do they recommend for educators to provide to parents of children with disabilities?

Theoretical framework
We approach these questions using an ethnographic method, guided by developmental cultural psychology (Miller, Hengst & Wang, 2003). This approach, a combination of individual interviews and participant observations, allows us to contextualize parents’ responses within Japanese sociocultural and educational contexts, and better understand the experiences of Japanese parents and their children with disabilities at school. Further, the examination of Japanese parents’ perspectives of stigmatization, which are likely to be different from those in Western cultures, highlights our cultural blind spots (see Morson & Emerson, 1990), and may lead to new and creative solutions to support the academic and social functioning of children with disabilities.

Methods:
We examined semi-structured, audio-recorded individual interviews of eight Japanese parents raising school-aged children with disabilities conducted in Japanese. Half of their children attended an elementary school that served as our primary site. The rest of the children attended other elementary schools within the same city. During the interviews, parents described their perceptions of their children’s disabilities and associated stigmatization at school. In addition, participant observations were conducted by [Author 1] who volunteered as a teaching assistant at the primary site. Her fieldnotes described everyday interactions among these children, their parents, and educators. All interviews were transcribed verbatim and analyzed in Japanese. Using analytic induction techniques, the initial analyses focused on understanding parents’ experiences through repeated readings of the transcribed interviews (Schwandt, 2007), contextualized by participant observations. Guided by developmental cultural psychology (e.g., Miller et al., 2003), cultural analyses were then conducted. Parents’ responses were contextualized within Japanese sociocultural contexts through review of the literature regarding disability and stigmatization in Japan. The credibility of our analyses was critiqued by Japanese colleagues for the purpose of peer debriefing (Lincoln & Guba, 1985).

Results:
Participant parents’ perceptions reflected Japanese people’s general sensitivity to the threat of stigmatization due to individual differences. Parents described how their sensitivity to the negative responses of others to their children’s disabilities led to social isolation. Many parents’ anticipation of stigmatization, for instance, led to their initial avoidance of disability labels and services for their children. After enormous, sustained efforts to support their children by themselves, these parents eventually consulted with professionals and secured special education services for their children. Yet they were concerned about stigmatization by singling their children out from peer groups for specialized services. They preferred support to be holistically and unobtrusively provided by all teachers (i.e., classroom and special education teachers, and other support professionals) during both academic and non-academic activities, including through the practice of mimamori [mi: watching; mamori: protection]. Parents, for instance, described educators who watched over their children with affection and empathy as protective figures. This practice allows children the autonomy to learn and discover from these experiences, and solve problems with peers. Yet if children need immediate attention, educators intervene.

Conclusions/Implications:
The Japanese case sensitizes professionals around the world to the impact of stigmatization on children with disabilities and their parents. Our findings provide insights into the development of stigma-sensitive approaches to supporting children with disabilities and their parents, including in the U.S., such as a holistic and unobtrusive approach. This practice can create a school culture that accepts all children including those with disabilities from which other children also can benefit. Such holistic approaches require on-going, and persistent collaboration among educators involved in the support for children with disabilities.

Authors

• Misa Kayama, University of Mississippi

• Wendy Haight, University of Minnesota-Twin Cities