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Disability, Culture, and DevelopmentA Case Study of Japanese Children at School$

Misa Kayama and Wendy Haight

Print publication date: 2013

Print ISBN-13: 9780199970827

Published to Oxford Scholarship Online: April 2014

DOI: 10.1093/acprof:oso/9780199970827.001.0001

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Research Program

Research Program

Chapter:
(p.19) 2 Research Program
Source:
Disability, Culture, and Development
Author(s):

Misa Kayama

Wendy Haight

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780199970827.003.0002

Abstract and Keywords

This chapter discusses some methodological implications of a sociocultural developmental perspective of children’s disabilities, the implementation of the ethnographic research, and the first author’s reflections on her experiences collecting data on a culturally-sensitive topic. This chapter begins with a cultural analysis of Japanese policies relevant to the design and implementation of formal special education services for children with developmental disabilities. Then, the chapter describes the field research, conducted in 2009-2010. The first author conducted participant observation as a teaching assistant for children with developmental disabilities. Educators and parents participated in in-depth, semi-structured interviews focusing on their socialization and educational beliefs and practices in relation to the new special education system. In-depth longitudinal study was conducted over two school years with three children as they transitioned into special education.

Keywords:   ethnographic research, participant observation, culturally-sensitive approach, semi-structured individual interviews, researcher’s reflection on field work, disability study, reactive method of field entry, Japanese education

Research Program

Child’s drawing showing Misa in her wheelchair in the second grade classroom.1

Children’s curiosity about my wheelchair helped me to initiate and establish relationships with them. Many older children asked me why I used a wheelchair, but younger children seemed more interested in the wheelchair itself. In the second grade hallway, children excitedly pushed me in my wheelchair, but had difficulty steering straight: “Watch out, we will hit the wall!” Even before I had entered their classroom, first graders immediately surrounded me as soon as they saw me in the hallway. One child requested, “Show me your driver’s license [for a wheelchair],” and expressed concern that I did not have one. Several children spontaneously shared their own experiences of disabilities or difficulties. Rather than actively asking questions, I waited for children’s reactions to my wheelchair and listened to how they related it to their own experiences. (From Misa’s field note)

(p.20) This excerpt from Misa’s field note illustrates children’s active co-construction of the meaning of disability during their everyday interactions at school. It also illustrates a “reactive strategy” to field research (Corsaro, 1997, 2003) on socially sensitive issues. The issue of “disability” in Japan is fraught with complexity. Stigma associated with disability also can be an obstacle to examining individuals’ beliefs, experiences, and perceptions. To address these challenges, Misa first allowed children to approach her, ask her questions about her disability and wheelchair, and spontaneously react including sharing stories of their own difficulties before she ventured to ask any questions of her own. In this chapter, we discuss some methodological implications of a sociocultural developmental perspective of children’s disabilities, the implementation of the ethnographic research, and Misa’s reflections on her experiences collecting data on a culturally sensitive topic. We also consider the important, but too often minimal, role of scholars with disabilities in the field of disability studies and special education, including ethical issues in the elicitation of narratives describing stressful, and potentially traumatic, events.

Understanding the Experiences of Individuals With Disabilities

We will examine the issues of stigma and disability through the perspectives and experiences of Japanese children with developmental disabilities, their parents, and educators. In many cultures, disability is a sensitive issue to openly discuss and explore, in part, because of the stigma attached to disabilities (e.g., Goffman, 1963; Kock et al., 2012; Olney, Kenedy, Brockelman, & Newsom, 2004) and concerns about the potentially negative impact of sharing traumatic experiences. Therefore, individuals with disabilities may not necessarily welcome the opportunity to tell their stories. They may intentionally leave out central aspects of their experiences or choose to remain silent altogether. Yet understanding their beliefs and experiences is critical to providing relevant, effective, and culturally sensitive support.

The challenges faced by individuals with disabilities are complex, and the meaning of these experiences may be difficult to communicate directly. For example, children with disabilities may require accommodations to enjoy and fully participate in school activities. Yet receiving accommodations may make children feel that they are different from other children (Minow, 1990). Children may express their stress, ambiguity, and confusion indirectly in their stories, play, humor, and rituals (Clark, 2003). As we will discuss in chapter 7, one of our participant children expressed and coped with stress through pretend play. If adults attend to children’s implicit messages, they may be able (p.21) both to give children opportunities to express their struggles more directly and to provide necessary support.

In addition, appropriate social distance and relationships may be critical to expressing and understanding socially difficult and emotional experiences. For example, some stories remain untold because individuals choose to remain silent in certain contexts, such as in their families. Their concerns are for family members, including their reaction to the stories, their impact on their relationships, and the extra burden secret stories may place on family members. For example, a Taiwanese grandmother, who had remarried in violation of cultural norms, kept stories about her deceased first husband secret for years until she told an ethnographer. During important transitions in her life, her first husband appeared in her dreams. She felt that these stories would not be appreciated by her family members. The researcher, however, was an outsider, so the grandmother did not have to worry about such consequences and felt comfortable in telling her stories of her first husband (e.g., Miller, Fung, & Koven, 2007).

Likewise, in some cultures, disability stories may be a type of secret story. In Jegatheesan, Fowler, and Miller’s (2010) research with South Asian Muslim immigrants in the United States, parents expressed hesitation in disclosing their children’s diagnoses of autism to extended family members. They were especially concerned about the possible negative impact on elderly grandparents’ health. In Asian countries where people are sensitive to differences from others and group harmony is valued (Chan, 1998; Tachibana & Watanabe, 2004), telling one’s own or a family member’s disability story in public can highlight the differences of individuals with disabilities and suggest that they are not fully competent community members. This can bring shame to the family and damage their relationships with other extended family and community members.

Children with disabilities also may be sensitive to how their experiences influence their relationships with family members, and they may choose to remain silent about their experiences to maintain family roles. Children sometimes feel that they can handle their experiences and feelings better than their parents, especially if parents become overprotective or overwhelmed by hearing their stories (Clark, 2003). For example, an 8-year-old child understood her terminal illness and felt protective of her parents and older brother who would grieve her death (Deford, 1997). Children may know much more than adults think they do and have the ability to express their feelings and experiences. Researchers from outside may be able to provide more opportunities for them to express their feelings and experiences than family members and friends with whom children have close relationships.

(p.22) Timing also is important in the telling of traumatic experiences. Stories about disabilities may cause emotional reactions such as fear, anger, shock, and sorrow in those with disabilities and others (Charmaz, 2002). Yet the meanings of traumatic experiences may change over time, and silenced stories may eventually become tellable. Portelli (2003) interviewed people who witnessed the massacre in Rome at the end of World War II. One of the participants described that it was the worst experience of his life. Now, he talks about those times with friends to share and remember their experiences. In addition to adjustment to a traumatic loss, people who acquire disabilities have to accept their disabilities and re-learn skills required in their daily lives. Parents of children with disabilities also have to make psychological adjustments and additional efforts to find necessary support for their children (Cohen & Napolitano, 2007). Children and parents may need time to remain silent until they internalize their past experiences and feel that they are no longer in a crisis situation.

Thinking back over their past experiences and re-organizing their stories can help people to cope with past traumatic experiences (Steedman, 1986). Every person has had experiences that have important meanings for them, such as experiences that determined their future paths. At these turning points, people sometimes leave behind “unfinished business,” especially when they were not satisfied with the decisions they made. Acquiring a disability or discovering that one’s child has a disability can be such a turning point. Individuals have to make decisions about how to cope with disabilities. Their prior desires may not be fulfilled and may have to be adjusted within the available resources and abilities (Cohen & Napolitano, 2007). Memories and emotional reactions to these experiences may come up years later. Steedman (1986) notes that writing down one’s own history makes it possible to understand how each experience is connected and to learn about the self. In the same way, thinking back about their past and telling their stories may help people with disabilities and their family members to comprehend, internalize, and make peace with past painful experiences.

Similarly, children with disabilities may benefit from expressing their feelings and experiences. Unless children with disabilities and their parents are asked to share their experiences, their voices may remain silent, especially if children’s disabilities are less visible as are “developmental disabilities.” If adults and peers do not have sufficient knowledge and resources, then the needs and confusion of children with mild cognitive and behavioral disabilities may not be noticed unless someone creates opportunities for them to speak up. Research participation is one way to give public voice to the experiences and perspectives of these children, their parents, and educators.

(p.23) Methodological Issues in the Sociocultural, Developmental Study of Disability

Given that asking questions about disabilities can cause emotional distress, the ethical study of individuals’ experiences of “disabilities” raises methodological issues. To hear the narratives of Japanese children with disabilities, their parents, and educators, as well as be allowed to participate in their everyday lives, the methods we employ must be sensitive to Japanese cultural perspectives on disability.

Children with disabilities and their families may choose to communicate their stories to audiences whom they perceive as capable of understanding their experiences and who will not deny or ridicule their narratives (Charmaz, 2002), especially in Japan where people are sensitive to other people’s responses. If they think that researchers are not able to understand the difficulties they are experiencing, then they may speak only briefly, or not at all. To hear their stories and interpret silence, researchers may have to develop relationships with participants, gain trust, and let them know that they can understand their stories. Sharing similar experiences with participants may help us to establish trusting relationships.

If researchers exploring disability stories have disabilities, their own personal experiences of disability provide them with unique opportunities to hear participants’ disability stories and explore their perceptions and experiences of disability (Tregaskis & Goodley, 2005). For example, they may be especially sensitive to implicit messages regarding hardships and be able to interpret and explore them further. This sensitivity and empathy also makes it possible to recognize when the interview has become intrusive, and make an ethical decision whether to continue (e.g., Stake, 2010). Yet relatively few researchers with disabilities seem to use their personal experiences to develop studies of the meaning and experience of disabilities (Tregaskis & Goodley, 2005; see also Green, Davis, Karshmer, Marsh, & Straight, 2005; Peters, 2010; Ware, 2002). In this study, our first-hand experiences as an individual with a disability (Misa) and a parent of a child with a disability (Wendy) helped us to hear the voices of children with disabilities and their parents and also provided insider perspectives helpful to understanding and interpreting their experiences.

Implementation of the Ethnographic Research

We used ethnographic methods to examine the everyday experiences of Japanese children with developmental disabilities, their parents, and educators. We first considered new social and educational policies pertaining to (p.24) disability and special education focusing on how the sociocultural and historical contexts of twenty-first century Japan have shaped such policies. We reviewed Japanese governmental and local documents describing relevant history and law produced during a period of transition into a formal special education system for children with developmental disabilities. This cultural analysis of policy focused on the timing of the implementation of new policies in relation to major historical events and societal transitions, cultural understandings of new disability categories, and education services for children with developmental disabilities. This analysis allowed us to consider how the formulation and implementation of formal, national policies were constrained by cultural context including traditional Japanese educational and socialization goals and practices and parental sensitivity to stigma as well as how policies were translated into local practices at Greenleaf Elementary School.

The field research component of our study spanned two school years and broadly considered how national educational policies and local cultural context intersect in children’s everyday lives at school. We examined how educators, children, and their parents navigated their way through the transition to the new support system. Ethnographic field methods allowed us to engage in children’s lives at school and gain an understanding of practices, challenges, and successes that they and their educators and parents were experiencing. Our focus on routine, everyday practices provided us with opportunities to examine how children and adults co-construct the meanings of disability in their everyday interactions (see Clark, 2010; Corsaro, 2003; Miller, Hengst, & Want, 2003) and obtain a deeper understanding of the “world” of Japanese children with developmental disabilities at Greenleaf Elementary School (e.g., Duncan, Huston, & Weisner, 2007; Garcia Coll & Marks, 2008, Miller, Hengst, & Want, 2003; Weisner, 2005).

Our research was enhanced through a combination of insider and outsider perspectives. Misa’s participation as a volunteer teaching assistant provided her with a unique opportunity to learn about the school as an insider. Clear expectations and responsibilities as a teaching assistant also provided her with a place to belong and accordingly made it possible to observe and communicate with children and adults in natural settings, which was critical to understanding participants’ own experiences (e.g., Briggs, 1986). Through her role as teaching assistant, Misa also was able to follow up with three children for longitudinal case study. This longitudinal design allowed us to observe how children perceived transitions into a special education classroom, how they adjusted to these new environments (including their relationships with peers and educators), and the ways that their parents and educators facilitated and supported their transitions.

(p.25) Further, our bicultural experiences allowed us to move back-and-forth among a variety of insider and outsider perspectives.2 Misa and Wendy have both insider and outsider perspectives in interpreting the experiences of Japanese children and their parents at school. As insiders we live effortlessly within a set of taken-for-granted premises but may have difficulty seeing or articulating these premises. As outsiders we may engage in the process termed “creative understanding” by Bakhtin (Morson & Emerson, 1990) in which we locate ourselves outside of the group to identify cultural “blind spots”—that is, patterns of beliefs, thoughts, behaviors, and so forth that insiders may take for granted. At the same time, a cultural outsider cannot flexibly enact, alter, or contextualize these premises. For example, in previous research on Japanese child welfare (see Bamba & Haight, 2011), Wendy’s outsider perspective allowed her to identify “Ibasho3 as relevant to socialization, but its meaning was interpretable only in close collaboration with Sachiko Bamba, a cultural insider. It is through the repeated back-and-forth of insider and outside perspectives that clear vision is achieved. We do this through discussion with one another but also through our own reflections from our own multiple perspectives. In this book, we seek a deeper and more complete understanding of Japanese beliefs, practices, and experiences related to disability through an interaction of insider and outsider perspectives.

Cultural Analysis of Policy

Our analyses of policy primarily involved a systematic review of Japanese government documents on special education and local documents specifying how national laws were translated into practice in the particular context of Greenleaf Elementary School. Most documents we reviewed were available only in Japanese. Misa first summarized the documents in English and then discussed them with Wendy. Through this process we considered the cultural and historical contexts of the special education reforms and integrated cultural understandings of disabilities into our policy analysis.

First, we reviewed laws that determine special education in Japan, as well as the history and policies related to special education services for children with developmental disabilities. These documents were available through websites and publications by the government offices, such as the Ministry of Education and the Ministry of Health, Labour and Welfare. They included laws, regulations, notices, and announcements issued by the Ministries; research reports submitted to the Ministry of Education; publications summarizing historical contexts of special education; and the national curriculum standards for general and special education.

(p.26) Second, we reviewed guidelines and instruction manuals related to special education established by the local board of education of the city in which Greenleaf Elementary School is located, including future plans and goals for special education, classroom management guidelines for special education classroom teachers, guidelines to create individualized education programs, and curriculum standards. These materials were provided by the principal of Greenleaf Elementary School and the local board of education or obtained from the website of the local board of education. Field notes also described discussions with individuals outside of Greenleaf Elementary School, such as educators in other schools and a staff member of the local board of education. Finally, information about Greenleaf Elementary School was obtained from educators as well as the school’s web site including mission statements, goals, funding, and procedures to implement individualized support for children with developmental disabilities.

Field Research

Site

This research was conducted in “Riverside City,4” which has a population of more than 1 million. Within the city, the same local government serves several distinct areas including business and industrial districts, newly developed residential areas, and traditional areas. The local board of education takes the leadership role in all public schools within the city. In traditional areas, many families have resided in their homes for generations. People are expected to help one another, and raising children is viewed as a community responsibility. Although more people are leaving their parents’ homes to raise their own families, multigenerational households remain common, and those who have left retain their places in the community and return for family gatherings. In contrast, the majority of residents in newly developed residential areas live in nuclear families. These areas were created over the past 10 to 30 years as a result of industrialization and urbanization. Because these areas are new and include residents from other cities, connections between community members typically are less strong than in traditional areas.

Riverside City was selected for our research for a variety of reasons. Riverside City is one of the cities recognized by Japanese educators as providing high-quality special education services. Within the city, almost all public elementary schools have at least one special education classroom, which is not yet typical in many other cities. On a more practical level, Misa’s parents’ house is located in this city, and she stayed there during the period of data (p.27) collection. In addition, she had attended school in this city, which helped her to initiate conversations and establish relationships with some of the educators. They knew the elementary school she graduated from, and some of them knew the surrounding community. Some experienced educators also recognized Misa as a “child” who grew up in the city, rather than a researcher from the United States.

This study focuses on children who attend general public elementary schools. Most Japanese children, including those with “developmental disabilities,” attend public schools. Only 0.3% and 1% of all elementary school-aged children attend national or private elementary schools, respectively (Ministry of Education, 2012b). These schools typically have entrance exams and may develop their own curriculum beyond what is required for public schools. As of 2011, only 8 of 74 national elementary schools and 1 of 216 private elementary schools had special education classrooms. In contrast, 73% of public elementary schools had special education classrooms (Ministry of Education, 2012b).

Greenleaf Elementary School was identified with the help of the local board of education as the primary research site of this study. It met national standards for elementary schools (Ministry of Education, 2002d), was implementing newly introduced educational services for children with developmental disabilities, and had a special education classroom. Another reason for choosing this site was its accessibility to Misa’s wheelchair. Japanese public schools usually are two to four stories with classrooms on the upper floors. Elevators or accessible entrances are not yet common. Recently, the needs of children with physical disabilities have been recognized, and several schools have remodeled their buildings as needed when children with physical disabilities enroll. In Riverside City, as of 2004, about 10% of elementary schools had elevators in their school buildings.

Greenleaf Elementary School is located in the traditional area near the borderline of Riverside City and an adjacent city. This school was one of the smaller schools in Riverside City, enrolling about 200 children from first through sixth grades. Each grade level had one classroom of 30 to 37 children, with the exception of second grade, which had two classrooms of about 20 children5. Our field research was conducted in 2009 to 2010, the third and fourth school years during which formal special education services for children with developmental disabilities were being implemented at Greenleaf Elementary School. During this time, five to seven children with disabilities from second to sixth grades received services from two full-time classroom teachers in a special education classroom, “The Rainbow Room.” A special support room,6 “The Challenge Room,” (p.28) was used weekly by children from general education classrooms who needed extra help and daily by several children with developmental disabilities who had interpersonal problems. The Challenge Room was staffed by a part-time teacher and teaching assistants. Educators who teach in the Challenge and Rainbow Rooms participate in workshops and trainings for educating children with developmental disabilities but do not necessarily hold special education certificates7. During the two school years this study was conducted, there was one teacher who held a special education certificate. This teacher taught children in both general and special education classrooms. Children in the Rainbow and Challenge rooms maintained membership in their general education classrooms, participating as much as possible with their typically developing peers.

Greenleaf Elementary School includes a school building, gym, swimming pool, large playground, flower and vegetable gardens, animal cage, and fish pond. It is enclosed by walls and fences. The playground has a free space with soccer ball goals, basketball poles, and other equipment such as a climbing pole and is also used as a track during physical education classes. There is a gate near the school building that, for security reasons, is open only during children’s arrival and dismissal times. During other times, visitors use an intercom to call the staff office for entrance. There are security cameras around the gate so that staff members can monitor people who visit and leave the school (see Fig. 2.1).

The first floor of the main building is used for administrative offices (see Fig. 2.2). The principal’s office, a staff room, a school nurse’s office, a business office, and a locker room for staff members are located on the west side. About half of the east side is occupied by the school kitchen. The remaining area includes a printing office, a studio with audio and video equipment for in-school announcements, a counseling room, and an office for a parent volunteer group, called “Team Greenleaf.” (See chapter 4 for more detailed description of Team Greenleaf.) Parents frequently gathered and worked in this office or another office for the parent and teacher association (PTA) located on the fourth floor.

There is an elevator between the east and west sides of the building. This school building did not have an elevator when it was built originally in the 1970s. The elevator was installed several years ago to accommodate a first grader with a physical disability. Teachers and other staff members frequently use the elevator to go to classrooms, but children are not allowed to use it without permission. Children with whom Misa was working sometimes accompanied her in the elevator. Other children who saw these children coming out from the elevator with Misa sometimes asked her if they could ride (p.29)

Research Program

Figure 2.1 Greenleaf Elementary School

the elevator too, and she had to handle the situation as a “teacher,” tactfully refusing such requests.

The second, third, and fourth floors of the school building are used for classrooms, including general education classrooms; the Rainbow and Challenge rooms; and special rooms for science, crafts, home economics, and music. Classrooms are arranged so that children in the Rainbow and Challenge rooms are able to interact with other children in general education classrooms. Libraries are located on the second and third floors. The library on the second floor mainly has fictional books, and the library on the third floor has nonfiction (science, history, and reference books including a children’s encyclopedia to be used for research projects). In addition, there is a classroom for small group instruction, a computer room, and an English classroom. The computer room is used for classroom instruction as needed, as well as club activities. During the 2009–2010 school year, the small group instruction room was primarily used for math instruction, as Math was taught (p.30)

Research Program

Figure 2.2 School building layout

in small groups in several grade levels. Either a general education classroom or the English classroom is used for English instruction, depending on the day’s activities. The English classroom does not have desks and chairs and is used for a variety of activities involving music, dance, and games (see Fig 2.2).

During the second school year of data collection, the classroom arrangement changed. In particular, the Rainbow Room expanded into the room next door (the former Challenge Room) as the number of children had increased. From April (the new school year), a counseling room located on the first floor was used as the Challenge Room, and the same part-time teacher continued to teach small groups of children there once a week.

(p.31) Participants

A director of special education from the board of education introduced Misa to the principal of Greenleaf Elementary School. As suggested by the director, she visited the school one day in June, 2009 to observe the children during a school day in her role as graduate student from the United States without mentioning this study. She observed several classrooms, including those with children with developmental disabilities, and ate school lunch with children in a classroom. After observing the school and sharing information with the principal about schools in the United States, she explained the study and obtained permission to conduct it at Greenleaf Elementary School. When the principal heard that Misa would like to interview educators, children, and their parents, she suggested that she work as a daily volunteer. The principal reasoned that it would be easier to introduce the research project to children and parents if they first got to know Misa as a teaching assistant. Because the principal was looking for a teaching assistant to work with children in the Challenge Room, Misa began working as a volunteer teaching assistant 2 days after her first visit. In addition, Misa asked the principal to explain to parents and educators that observations would be conducted during the period of the study.

The principal also helped identify and introduced Misa to individual participants. Fifteen of the 17 educators at Greenleaf Elementary School participated in individual interviews. Two teachers did not participate because of their busy schedules. Sano sensei, the special education coordinator, served as a primary informant. She was an experienced teacher who also worked full time as the “school nurse,” a position that involved overseeing children’s health and their physical and mental development, providing health education, and referring children to appropriate health-care agencies. Parent participants were nominated by the principal. She was concerned that study participation might have a negative psychological impact on some parents who had not yet fully accepted their children’s disabilities and needs for special support. She restricted her referrals to parents whom she viewed as having accepted their children’s disabilities or “difficulties.” Parents of three children with developmental disabilities were recruited. Their children, Dai, Kakeru, and Yusuke, were also selected for in-depth case studies. In terms of ethnicity and social class, these three middle-class families were similar to the other families whose children attended Greenleaf Elementary School.

At the beginning of data collection, Dai was 8 years old. He had a diagnosis of high-functioning autism. Until third grade, he participated full time in his general education classroom. In third grade, he began to have interpersonal (p.32) problems with peers and struggled with increasing academic demands. He could express himself verbally but had difficulties in “reading” other people’s thoughts and emotions. In addition, he frequently used polite language, which sometimes made him appear to be reading aloud from a book. He could take the initiative to expand activities he was interested in but was cautious about trying anything new. When he received appropriate support, he functioned well at school. During the study, Dai transferred to the Challenge Room and subsequently to the Rainbow Room. He retained his seat in his general education classroom but because of interpersonal difficulties preferred the Challenge or Rainbow Room. Yet he was always welcomed by peers and his classroom teacher when he returned to his general education classroom.

At the beginning of the study, Kakeru was 7 years old. He also had high-functioning autism. He studied full time in his second grade classroom with support provided by his classroom teacher who held a special education certificate. During the second semester, he began to study at the Challenge Room once a week. He was proud of his extensive knowledge of “bugs,” a skill other second graders acknowledged and valued. This status within his peer group motivated Kakeru to work, study, and play with friends in his general education classroom. Yet he had difficulties in paying attention to others and needed assistance in following directions and staying on task. His behaviors in the classroom, such as talking at inappropriate times, could be distracting to others, and he began to notice that these behaviors made him different from other children. With the support of his parents and his second grade classroom teacher, Kakeru decided to transfer to the Rainbow Room in third grade.

At the beginning of data collection, Yusuke was 10 years old. He had a learning disability that made it difficult for him to decode written text and calculate and speech problems (stuttering). He went to a resource room in Parkside Elementary School8 once a week to receive individualized support for his speech problems. He knew that he could not read, write, and do arithmetic at the level of his peers. When studying in his general education classroom, he lost motivation and described himself as “hopeless.” For several months in fourth grade, he refused to go to school. When he came back to school, he studied at the school nurse’s office, a counseling room, or the principal’s office. In fifth grade, Yusuke began to view himself more positively, as he began playing and studying with other children in the Rainbow and the Challenge rooms. With support provided by educators and his parents, he decided to transfer to the Rainbow Room. He also retained a seat in his general education classroom, participating there with his peers mainly during lunchtime, social studies, science, music, and other activities in which his functioning more closely resembled that of his peers.

(p.33) Procedures

Misa collected the field data in three waves: the summer of 2009 (6 weeks), the winter of 2010 (5 weeks), and the summer of 2010 (5 weeks).

Field entry. The principal introduced Misa to the children on her first day during the morning meeting. Morning meetings and activities with all children from first through sixth grades occurred every Monday and occasionally on Friday. At the end of the meeting, the principal introduced Misa as a student from the University of Illinois in the United States who had come to Greenleaf Elementary School to learn about a Japanese elementary school. She told children that Misa would attend school every day until the summer break as a teaching assistant. Misa then introduced herself and, as suggested by Sano sensei, encouraged children to ask her questions about her wheelchair and the United States when they saw her during recess and breaks. The principal also officially introduced the Challenge Room, which had been newly created at the beginning of the school year in April. The principal explained that the Challenge Room was a place where children could study one-on-one with a teacher when they had something difficult to understand9.

At the beginning of the following week, the principal officially introduced Misa to educators during an in-school workshop on autism spectrum disorders and other disabilities that cause social and learning difficulties. The principal indicated that Misa had studied special education in the United States and would work as a teaching assistant primarily for children in the Challenge Room until the summer break.

During the first wave of data collection, children asked Misa many questions, mostly about her wheelchair, whenever possible. Some children even asked her questions during classroom instruction, and she had to tell them to ask her after class. As children became accustomed to her wheelchair, Misa was able to enter their classrooms without distracting them from classroom activities. Classroom teachers also encouraged children to ask Misa questions. This made it easier for Misa to initiate conversations with children and establish relationships.

Participant observation. Misa conducted participant observation as a teaching assistant for children with developmental disabilities for a total of 16 weeks across two school years. Her daily field notes focused on children’s interactions with peers, their parents, and educators during their routine activities at school. Informal conversations related to research questions with educators, children, and their parents also were described in field notes.

Misa’s role as teaching assistant. Misa typically arrived at school around 9 a.m. and stayed until 4 p.m. or 5 p.m. She spent her time in classrooms and sometimes in the staff room, where teachers had their own desks. In (p.34) addition to her primary assignment in the Challenge Room, she assisted in the Rainbow Room. During the second and third waves of data collection, she also served as a teaching assistant in all general education classrooms from first through sixth grades. She assisted in Math, Japanese Language, crafts, English, international studies, integrated studies, social studies, science, home economics, music, and moral education. In these classrooms, her roles varied from moving around the classroom to help children who were struggling to working one-on-one with children identified by teachers.

After children went home, Misa wrote in the daily log for teaching assistants describing what she had done during each class period, her reflections, and any questions to the principal and the special education coordinator, Sano sensei. Occasionally, she discussed the children with Sano sensei and asked for suggestions. The principal and Sano sensei read the daily log and wrote comments and suggestions as needed. During the first wave of data collection, a copy of this daily log was filed in the Challenge Room folders of Yusuke and Dai and circulated on a daily basis to teachers involved in providing support for them, including their general education classroom teachers. These folders were prepared so that all educators involved in supporting Yusuke and Dai could share information. As Yusuke and Dai transitioned into the Rainbow Room at the end of the first wave of data collection, Misa’s role as a teaching assistant shifted to assisting in general education classrooms. This allowed her to expand her observations to children in general education classrooms while following up with Yusuke and Dai.

Misa’s role as guest teacher. During the second wave of data collection, educators and parents asked Misa to talk with children about her experiences in a wheelchair. Sano sensei and Yusuke’s mother asked her to talk with him, individually, because he was beginning to suspect that he might have some sort of disability. Misa had worked with Yusuke individually as a teaching assistant, but had not talked with him about “disability.” The principal also asked Misa to visit each classroom from first through sixth grades as a guest teacher to talk about her experiences in a wheelchair as part of “moral education,” a required class described in the National Curriculum Standard. One of the goals of the year was learning about human rights, and the principal requested that Misa visit the classrooms to share her experiences in a wheelchair. The principal believed that it would be a good opportunity for children to hear from someone who actually had experiences coping with a disability. Each visit was about 45 minutes. After she shared her experiences briefly, children asked her questions. She brought extra wheelchairs to several classrooms, and children enjoyed “riding” in them. After the visits, children gave (p.35) her reflection letters. This book includes some of the letters, drawings, and discussions with children.

Individual interviews. Most Japanese people are not familiar with individual interviews, so it is especially important to create an environment and atmosphere in which they feel comfortable and to ask questions in a way in which they do not feel obligated to answer (e.g., see Briggs, 1986; Miller, Hengst, & Wang, 2003). Misa made the interviews conversational and asked questions whenever appropriate during or after routine activities, such as when participants spontaneously brought up issues related to our research questions. When questions were asked during daily activities and conversations, it was not possible to audio-record participants’ responses. In such cases, Misa had to rely on notes taken during or after the conversations.

Misa also did not interview participants until she had established relationships with them and learned specific terms used at school—for example, the names they used to refer to their classrooms and terms regarding types of support for children with developmental disabilities. During the first 3 weeks, Misa focused on her role as a teaching assistant and on establishing relationships with children, their parents, and educators. She did not actively collect data by asking questions or interviewing but kept field notes regarding her informal communications and observations of daily interactions with and among children, parents, and educators. During their conversations, Misa made sure that her questions were related to her role as a teaching assistant, not as a researcher. In the fourth week, Misa began interviewing adults and children individually.

Interviews with adults. Individual interviews with parents and educators were semi-structured and lasted from 30 to 60 minutes. They were conducted in a private location at school. The following issues were discussed: (1) participants’ beliefs about, and reactions to, children’s disabilities; (2) participants’ experiences in special education including with the new system; (3) how beliefs about developmental disabilities and societal responses affect the lives of children at home and school, including children’s relationships with their peers; (4) challenges faced by children with developmental disabilities, their educators, and parents; and (5) effective ways to handle these challenges. All but two interviews were audio-recorded. One interview with an educator was conducted through e-mail and supplemented with field notes describing informal daily conversations. A second interview was not recorded because it would have been an inappropriate request given that this educator was significantly older than Misa and serving as her supervisor. Rather, field notes described informal conversations with him regarding children with disabilities and support for these children. (p.36) During the second and third wave of data collection, Misa asked follow-up questions informally to parents and some educators. Their responses were described in her field notes.

Interviews with children. Individual interviews with children focused on the services they received, why they received them, and how they felt about them. Because they did not know they had “disabilities” or received “special education” services, Misa did not use these terms during the interviews. Rather, she used “difficulties” and referred to the “Challenge” and “Rainbow” rooms. By the time Misa interviewed children, they had become used to talking with her individually. She framed questions for them as an extension of their daily conversations. These interviews were conducted in the Challenge Room, where she usually spent time with them.

During the first wave of data collection, formal interviews were conducted with Yusuke and Dai. Misa had been working with them since her first week at Greenleaf Elementary School and talked with their parents on a daily basis. She was able to arrange the interviews easily and the principal also allowed her to interview them when she worked with them individually. Formal individual child interviews lasted approximately 10 minutes. Misa recorded the interview with Dai, who started and stopped the recording so that he was able to have control over it. The interview with Yusuke, who stuttered, was not recorded because his mother indicated that in the past he had been distressed to hear his recorded voice.

The third child participating in the case study, Kakeru, was informally interviewed during the second wave of data collection when he worked with Misa, individually, at the Challenge Room. During the first wave of data collection, he studied full time in his general education classroom. Misa observed him in his classroom and occasionally talked and interacted with him. She did not, however, have an opportunity to talk with him individually for the interview without “singling” him out. Rather, she asked the principal and Sano sensei for permission to observe and work with him in his classroom as a teaching assistant. Misa kept a record of communications with him and observations in her field notes.

Misa took notes of everyday conversations she had with all three children as much as possible during her observations and included these in daily field notes. The children talked to educators and teaching assistants about what they thought about school much more during daily activities and interactions than during the formal interviews. Misa’s dual roles as a teaching assistant and a researcher allowed her an opportunity to capture children’s voices in their everyday interactions at school (e.g., Clark, 2010; see also Paley, 1990, 1993). Input from children largely comes from Misa’s field notes.

(p.37) Review of case records. The principal shared with Misa the evaluations used to determine eligibility for special education services of the three children who served as primary participants. Misa took notes as needed, including on children’s diagnoses. In addition, when working individually with these three children, Misa took notes about the materials they were working on, their level of understanding, and comments from their classroom teachers and parents. Misa’s daily logs as a teaching assistant, which were kept separately from her field notes, also involved comments and responses from the principal and Sano sensei regarding children’s problems and progress and suggestions for Misa to handle situations she faced in classrooms.

Analysis of Field Data

Recorded interviews were transcribed verbatim. Analyses of transcribed interviews, field notes, and school records were conducted in Japanese by Misa. Using analytic induction techniques (Goets & LeCompte, 1981; Lincoln & Guba, 1985), the meanings of participants’ experiences and beliefs were interpreted through repeated readings of the transcribed interviews and field notes. Themes were identified from recurring topics in field notes and during interviews. Negative cases were used to expand and revise initial interpretations. Misa’s interpretations as an outsider frequently identified differences from U.S. practices, which allowed us to reflect on both Japanese and U.S. practices, raise additional questions, and examine further the experiences of Japanese children, their parents, and educators. Discussions with Wendy also raised issues for further study that were taken for granted by Japanese cultural insiders, including education for “kokoro” and the roles of peer relationships in education.

Attempts were made to enhance the credibility of the interpretations of participants’ experiences and beliefs. First, the credibility of Misa’s interpretations was critiqued by a Japanese Master of Social Work (MSW) student in the United States who had practice experience as a social worker for individuals with disabilities in Japan and through discussions with Wendy. Further, feedback from individuals who had professional and/or academic experiences in the field of school social work or special education in Japan critiqued the credibility of interpretations regarding Japanese educational policies and practices. The adequacy of the Japanese-English translation of illustrative excerpts also was critiqued. In addition, this study was conducted across two school years. This prolonged engagement enabled Misa to establish and maintain trusting relationships with participants and to gain an understanding of the context. It also allowed ample opportunities to clarify, support, or discount (p.38) themes identified in preliminary analyses. In addition, a summary of the findings was shared with some of the participants. Their feedback was used to strengthen interpretations from their perspectives. Finally, the use of multiple data sources (children, parents, and educators) as well as the use of multiple methods (interviews and observations) allowed for triangulation and expansion of understanding.

Misa’s Reflections: The Use of My Wheelchair As a Tool to Hear Children’s Stories

My role as a teaching assistant and use of a wheelchair offered me advantages in hearing children’s stories. First, elementary school teachers in Japan are considered to be the “mothers” of children at school. Yet they also are adult authority figures that, as Fine and Sandstorm (1998) articulated, can be an impediment to gaining access to children’s experiences (see also Clark, 2010). As a teaching assistant, I also was viewed as a nurturing individual but had much less authority than did classroom teachers. Also, as I sat in a wheelchair, I was face-to-face with children. They freely interacted with me as a friend, as well as a teacher.

Nevertheless, I also faced several challenges in addressing children’s “disabilities.” Many children with developmental disabilities were aware that they experienced different struggles than their peers, but they did not necessarily consider these “disabilities.” Further, educators were very careful about bringing up children’s disabilities with parents who had not noticed or accepted their children’s disabilities and need for special education services. The principal also suggested that I use a term “difficulties,” rather than disabilities, when talking with parents and children.

In this context, I had to be careful about asking participants about children’s “difficulties.” To initiate and establish relationships with children, their parents, and educators and to encourage their voluntary participation, I used participants’ curiosity. My previous experience in both the United States and Japan suggested that people, especially children, are interested in and curious about my wheelchair. For example, when I visited elementary schools, children approached me to look at my wheelchair and ask questions. Japanese children, who have more time unsupervised by adults at school than U.S. children, had many opportunities to interact with me, for example, during recess, breaks, and lunchtime. Yet whenever possible, U.S. children also sought me out to ask about my wheelchair during less structured activities. In other words, my wheelchair was a tool that enabled me to interact with children and hear their stories and experiences. In addition, I prepared (p.39) materials, including a toy wheelchair to facilitate conversations with children about their own stories and experiences. I also developed interview protocols involving my personal stories that may help children to reflect on their own difficulties. Creating the protocols also helped me to reflect on my experiences and to decide when, what, and how much to disclose (Dickson-Swift, James, Kippen, & Liamputton, 2007).

Still, I was concerned about the extent to which children would connect my experiences to their own because they had different disabilities than me. On the other hand, I was encouraged by Clark’s (2003) account of the ability of children to reflect on their own experiences after hearing of other’s challenges. For example, Clark (2003) described her asthma when interviewing children with diabetes to let children know that they had a shared concern—their illnesses. In addition, by revealing that she did not have the same experiences as the children and that she wanted to learn from them about their experiences, she helped to motivate them to tell their stories.

Once I went to Greenleaf Elementary School, I found that I did not have to use the prepared materials because my wheelchair itself made a strong impression on children. Even before I attempted to interact with children, they came to ask about my wheelchair. The opening vignette of this chapter illustrates children’s curiosity. Even if they did not remember my name, as soon as children saw my wheelchair, they came to see how the wheelchair worked and asked questions. My wheelchair and stories also created a safe environment for some children to express their needs and struggles and share their experiences of overcoming hardships. Overall, my wheelchair helped me to initiate interactions and conversations with children and hear their stories about difficulties they had experienced in the past.

I had three different types of interactions with children—specifically, interactions in less structured settings, such as during lunch, recess, and 5-minute breaks between classes when I visited classrooms as a teaching assistant; structured and official conversations with children when I visited their classrooms as a guest teacher who shared experiences about life in a wheelchair; and conversations with children in a structured and individual setting. In all of these settings, children shared what they thought about wheelchairs. Several children also volunteered their own stories of handling a variety of difficulties.

Individual Informal Interactions

Dyson (2003) described children’s movement back and forth between their official and unofficial social worlds. They modify what they have learned in the unofficial world of family and friends to interact appropriately with their peers (p.40) and teachers in the official world of school. Japanese first graders initially used their knowledge of the unofficial world to make sense of my presence in their classroom. When they first saw me, they did not consider me as a person who belonged to the “official” world of school, although they recognized other adults as either teachers or parent volunteers who helped them. One child actually looked at my wheelchair and asked me, “Can you really teach?” Once a classroom teacher introduced me as a teaching assistant and started giving instruction, children treated me as a person who would help them in the official world of school. Yet my wheelchair was always on the borderline between their official and unofficial worlds, and stories about my wheelchair usually belonged to the unofficial world, limited to recess or breaks. In the unofficial world, children freely asked about me and my wheelchair.

Whenever I visited their classrooms, children came to me to ask questions. Generally, younger children were curious about my wheelchair itself—for example, how it works—and asked me questions without hesitation. Older children were more cautious. For example, second graders first asked me if they could push me around the hallway, but first graders touched my wheelchair before asking for my permission. Older children also were more curious about the reasons I was in a wheelchair. They did not come to see me as soon as I entered their classrooms as younger children did. They came to ask questions once they got used to my presence. Several children told me about their grandparents who were in wheelchairs and showed me how they helped by pushing my wheelchair around. There also were children who asked me if I needed help.

Although many children were curious about how my wheelchair works, several children told me about their “difficulties” and “disabilities.” For example, a first grade boy sitting next to me during lunch asked about my wheelchair, “Do you have a disability? I have a disability, my leg is...” and shared his experiences of being in a hospital and using a wheelchair. His disability was not readily apparent, but he wore shoes slightly different from other children. It surprised me, because I did not expect a first grader to know the term “disability” and use it correctly. He also used the term without any hesitation. He was the only child who used “disability” to refer to his own “difficulties.” There was another child who used “disability” to refer to children in a special education classroom but described his own learning disability as “difficulties.”

Interactions in Structured and Official Settings

My wheelchair stories became official when, at the request of the principal, I visited children’s classrooms as a guest teacher to discuss life in a wheelchair. When I visited as a guest teacher, children “officially” asked me questions and (p.41) wrote letters to me. The principal believed that children learn more from listening to people who actually have experienced difficulties than only reading books. What surprised her was that some children reflected on their own difficulties and shared their experiences with peers.

Younger children asked more about how my wheelchair works and how I perform daily activities, such as cooking, grocery shopping, and driving a car. Children in one classroom were curious about restrooms for people with disabilities. I told them that there was one in the school building that was accessible to people in wheelchairs. Immediately, one child responded and shared with the class that she had used this restroom. A few days after I visited their classroom, I heard from one of the educators that a group of children went to check on and observe the restroom.

When I visited a sixth grade classroom, children shared their own experiences of when they had problems. After several children asked about my experiences, one child shared her story of how she handled other children’s responses when she had a bruise on her face. This child’s story and my wheelchair stories eventually created a safe environment to share personal experiences, and other children began to share their own stories. One child shared her thoughts about her sister with a physical disability. There were several children who asked me what I would do if I felt down. Others asked if there were times I felt like throwing everything away, avoiding everything, and hiding from everyone. I discussed how boring my life was when I felt like that and shared some of my coping strategies. In their letters, they shared some other experiences with me and asked more questions. Later, their classroom teacher told me that he was surprised that children shared so much of their own experiences in the classroom. Usually, the class is quiet and children are reluctant to answer his questions. Not only children who shared their experiences, but also children who listened to other children, seemed to learn about their peers in this safe environment.

Even younger children with disabilities asked me questions reflecting their own experiences. For example, a first grade boy with autism spectrum disorder asked, “It must be hard [to do everything in a wheelchair]. Why do you want to?” I told him that it is actually hard, but if I do my best, I can have good experiences that make me happy. Letters children wrote to me after the class illustrated their curiosity about my wheelchair and stories I shared with them and how much they enjoyed learning things that interested them.

Individual Communication in a Structured Setting

During my stay at Greenleaf Elementary School, Yusuke, a fifth grade boy with a learning disability, began suspecting that he had “difficulty in learning.” (p.42) Upon the request of a special education coordinator and his mother, I talked with him individually about my wheelchair. Yusuke was frustrated because although he was working very hard on reading and writing, he still was behind his peers. The special education coordinator explained to me that his disability and my disability were different, but he might be able to learn something from my experiences.

By the time I spoke with him, he had already heard from his mother about his “difficulties,” although she did not use the term “learning disabilities.” After both of us shared our stories, I asked him if there was something he’d like to talk about or that he found similar to me. He indicated that we both had problems we had to deal with. Although my disability and his disability were different, both of us have difficulties and need assistance in performing daily activities. For him, assistance is needed in learning how to write and read, and for me a wheelchair is needed to move around. Before this meeting, several teachers indicated that it might be too difficult for children of his age to make the connection between my difficulties and their own. As with other children who heard my stories and reflected on their own past experiences, Yusuke found similarities between us.

The Thoughtful Use of Self-Disclosure

If thoughtfully used, self-disclosure can help to create a safe environment and facilitate participants’ sharing of sensitive experiences. Self-disclosure of a researcher’s personal experiences can be a useful tool in establishing relationships with participants and hearing their stories. The use of researchers’ self-disclosures, however, must be thoughtful, carefully considered, and responsive to complex ethical issues, especially when the research focus is on emotionally challenging experiences, such as disability.

Research on Disability by a Researcher With a Disability

The existing literature suggests the potential use of researchers’ experiences of their disabilities as a way of eliciting the experiences of individuals with disabilities. Their previous personal experiences, including fear and pain related to disabilities, are useful in analyzing and interpreting the experiences of research participants. They can understand the experiences of oppression and discrimination “instinctively,” which is a useful resource for researchers involved in disability studies (e.g., Tregaskis & Goodley, 2005). For example, while hearing children’s experiences of struggles, my first-hand experiences of coping with a disability helped me to identify and interpret participants’ implicit messages and consider if or how I might examine further their experiences.

(p.43) In addition to analyzing and interpreting participants’ experiences, researchers’ personal experiences of disability can be used in other phases of the research, including data collection. In qualitative studies, disclosure of researcher’s experiences is generally useful in developing equal relationships with participants, building rapport, and facilitating participants’ sharing of experiences (Abell, Locke, Condor, Gibson, Stevenson, 2006; Linde, 1993). Therefore, it is reasonable for researchers with disabilities to share their disability stories when exploring participants’ experiences of disability, if done carefully. I intentionally refrained from sharing my experiences unless I was asked. Nevertheless, children, educators, and their parents gave me opportunities to share my experiences, which facilitated the voluntary sharing of their personal experiences of coping with difficulties.

In her book about American life stories, Linde (1993) explains that sharing one’s life story is a process involved in the development of personal relationships, such as close friendships. In a research setting, participants’ perceptions of relationships with researchers, such as degree of intimacy, also influence their decisions of which story to tell. Researchers from universities may be viewed as outsiders by participants who are in vulnerable situations because of differences in social, economical, and cultural status; age, and so forth. They may feel that their relationships are not equal. If researchers disclose their personal experiences, then it may help participants feel closer to the researchers and make it easier to talk with them about their experiences (Abell et al., 2006; Dickson-Swift et al., 2007). For example, although I know Japanese culture, I was a researcher from a university in the United States. Without showing children and educators that we share something in common (e.g., the same cultural background), it would have been difficult to establish relationships with them.

The similar experiences of researchers and participants can facilitate the establishment of trusting relationships and create a safe, secure environment for participants to share their own experiences, as my wheelchair stories did. When they feel secure and know that researchers are capable of understanding them, participants’ further disclosure can be supported (Dickson-Swift et al., 2007; Linde, 1993). When introducing herself, Clark (2003) told her participant children with chronic illnesses that she had asthma. Although her experiences as an adult were different from those of these children, it was important for children to learn that they had something in common to initiate their relationships. Even if researchers’ stories are not directly related to participants’ experiences, their stories may be useful. Indeed, children made connections between my experiences in a wheelchair to their own experiences of handling difficulties. Many children (p.44) reflected on their own experiences and found something similar, including their grandparents’ wheelchairs and their own difficulties. A wheelchair is just one example of the things we had in common that eventually became a chance for us to share experiences more directly. A safe environment is created to share sensitive, personal experiences.

Listening to other people’s stories also reminds us of our own stories (Clandinin & Connelly, 2000). As an individual with a disability, it is not unusual to remember similar experiences while hearing other people’s disability stories. Sharing such stories with participants may encourage them to elaborate their stories. They may remember their stories by hearing researchers’ stories. In other words, researchers’ own stories may be useful in introducing new topics, especially when asking about sensitive issues, such as disability. Researchers can ask about sensitive issues indirectly by sharing related experiences.

Methodological Implications for Research

Self-disclosure can be used in research broadly focusing on sensitive issues, including children’s disabilities and illnesses, traumatic experiences, and culturally and socially challenging experiences. How and what to self-disclose may also vary across cultural contexts. Examples of the use of my wheelchair narratives suggest the importance of careful consideration of how to address sensitive and challenging issues in a culturally appropriate manner. In a Japanese culture in which individuals are expected to sense what others are feeling and thinking rather than to express their own emotions and thoughts (e.g., Azuma, 1994; Shweder et al., 2006), self-disclosure initiated by researchers may be perceived as excessive or inappropriate. By waiting for participants to ask questions, I was able to share stories they wanted to hear and to initiate conversations in a way that they felt comfortable. This strategy may also be used in other studies, for example with people from cultural backgrounds different from researchers.

Ethical Issues

The personal stories of researchers, however, may affect participants’ responses in unintended ways. Telling and hearing stories may cause risks for both participants and researchers. There may be psychological consequences as a result of remembering painful experiences and feelings associated with disabilities, such as anxieties and fears, which usually do not come up in daily life (Tregaskis & Goodley, 2005). It should be the participants who decide if they tell their stories. Therefore, it is necessary to pay attention to participants’ verbal and nonverbal behaviors and implicit meanings of their (p.45) stories to minimize negative consequences for them. Participants also should be informed ahead of time that they will be invited to share their stories but that they do not have to do so.

Further, researchers with disabilities must consider carefully and make a personal decision regarding any sharing of their own stories to protect themselves from accidental and unexpected disclosures. One of the ways to prevent psychological consequences for researchers may be preparing stories before meeting with participants. Individual interviews with researchers in the field of healthcare showed that accidental disclosures made some researchers feel confused and out of control. There also were researchers who were not comfortable with disclosing their experiences during interviews with participants (Dickson-Swift et al., 2007). These responses suggest that it may be better if researchers plan the level of disclosure before meeting with participants, especially when the research focuses on sensitive issues including disabilities.

Self-disclosure that is excessive, directive, evaluative, or too brief may lead participants to remain silent, to respond in a way consistent with what researchers expect, or may cause misinterpretations and misunderstandings (Abell et al., 2006; Charmaz, 2002; Dickson-Swift et al., 2007). Researchers should critically evaluate the possible effects of revealing their own stories on participants, and any unnecessary and irrelevant disclosure should be avoided (Poindexter, 2003). For example, excessive disclosure may give participants an impression that researchers are trying to attract their attention and support and may prevent the development of equal relationships. Because the purpose of the interviews generally is to hear participants’ experiences, researchers’ stories have to be used carefully, so that they facilitate but do not interrupt participants’ accounts. It may be helpful for researchers to describe how they came to know about particular disabilities by using their own experiences, so that participants understand that they share something in common. Inviting participants to ask questions may also be effective in making sure that they understand the researchers’ stories.

Interviewing is a series of interactions between participants and researchers. It may be necessary to decide how much to disclose depending on participants’ responses during the interview. If researchers have at least considered which story has the potential to lead participants’ responses, a strategic, thoughtful, and deliberate plan can be made. In addition, leading effects may be reduced if researchers spend enough time with participants to hear the same stories several times (Lincoln & Guba, 1985). Stories may have several versions, but the core message of the stories should be maintained.

(p.46) Discussion

Our methodological strategy is ethnographic. It can be located in an evolving methodological conversation about how to obtain a deeper and more complex understanding of children in cultural context (e.g., Miller, Fung, Lin, Chen & Boldt, 2012) as well as a burgeoning ethnographic base of work describing children’s worlds and perspectives (e.g., Briggs, 1998; Corsaro, 2003; Miller, Hengst, & Wang, 2003). An important feature of the current research is its systematic use of our multiple insider-outsider perspectives and the thoughtful use of self-disclosure shaped to a Japanese cultural context. Another important feature of this research is its focus on the cultural analysis of policy. How culture informs policy decisions and guides and constrains its implementation on the ground is an issue gaining recognition in ethnographic studies (e.g., Duncan, Huston, & Weisner, 2006; Gracia Coll & Marks, 2008). In addition, our methodological approach flows from our emphasis on socially sensitive topics. Although ethnographic work on issues involving stigma is complex, it also is critical to hearing and understanding the perspectives of those with disabilities so that effective policies and practices may be designed and enhanced.

In conclusion, our use of policy analysis and ethnographic field methods allow an interpretation of the meanings of social behavior and everyday experiences from the participants’ perspectives as situated within a broader context of beliefs, practices (e.g., Hymes, 1982) and policy. Everyday behaviors and conversations are embedded within specific sociocultural-historical contexts (Bakhtin, 1981; Morson & Emerson, 1990). Without an understanding of these contexts, our understanding of external behavior and verbal communications is limited. Thus, intertwining cultural analysis of policy with ethnographic methods allows the identification of the beliefs and practices inherent in everyday life, interpretation of what such shared beliefs and practices may mean to the participants themselves, observation of processes of change in beliefs and behaviors over time (e.g., see Gaskins, Miller & Corsaro, 1992; Jessor, Colby & Shweder, 1996; Rogoff, 2003), and the contextualization of such beliefs and practices within national policy systems. Ethnographic methods provide us with opportunities to hear the voices of individuals with disabilities and understand their experiences: how they think and feel about their disabilities, the way they cope with difficulties associated with their disabilities, and how they integrate their difficulties into their daily lives and interactions with others (Lutz & Bowers, 2005; Phillips, 1990).

(p.47) Notes

(1) . When Misa visited general education classrooms to share her experiences in a wheelchair, she brought extra wheelchairs to several classrooms. Children enjoyed “riding” on and pushing them.

(2) . Thanks to Peggy Miller for the insights expressed in this paragraph.

(3) . “Ibasho” is literally translated as a “place to belong,” and connotes a place where one feels cozy, at home, fully accepted, and able to express oneself fully. It is considered to be basic to mental health and well-being throughout the lifespan.

(4) . To maintain confidentiality of the research site, details of the city have been modified.

(5) . The national law specifies that in general education classrooms, 1 classroom teacher is assigned for every 40 children. The law also provides the standard to calculate the number of educators assigned to each school depending on the number and types of classrooms, either special or general education classrooms (Ministry of Internal Affairs and Communications, 2011a). The latest amendment in 2011 decreased the maximum classroom size for first graders to 35 (Ministry of Education, 2011b).

(6) . Currently, instruction in special support rooms is not considered “special education” in Japan. Special support rooms are usually staffed by classroom teachers during their planning time, part-time teachers, or teaching assistants.

(7) . Under the law that determines teacher certification, educators who teach in classrooms at special education schools are required to hold a special education certificate of their specialization, such as hearing and visual impairments, intellectual disabilities, and physical disabilities, in addition to a general teaching certificate. However, schools are allowed to postpone implementing this requirement (Ministry of Internal Affairs and Communication, 2008b). During the 2011-2012 school year, 70% of educators at special education schools held special education certificates for the disabilities that children they worked with had (Ministry of Education, 2012a). Further, the law does not require certification for teaching in special education classrooms at general public schools. It is typical that children in special education classrooms are taught by teachers who only have a regular teaching certificate.

(8) . Children may receive special education services at resource rooms in other schools when their schools do not offer needed services.

(9) . Any child experiencing difficulties in learning in a general education classroom may be referred to receive small group or individual instruction at the Challenge Room. The only requirement during this school year was parental permission.

Notes:

(1) . When Misa visited general education classrooms to share her experiences in a wheelchair, she brought extra wheelchairs to several classrooms. Children enjoyed “riding” on and pushing them.

(2) . Thanks to Peggy Miller for the insights expressed in this paragraph.

(3) . “Ibasho” is literally translated as a “place to belong,” and connotes a place where one feels cozy, at home, fully accepted, and able to express oneself fully. It is considered to be basic to mental health and well-being throughout the lifespan.

(4) . To maintain confidentiality of the research site, details of the city have been modified.

(5) . The national law specifies that in general education classrooms, 1 classroom teacher is assigned for every 40 children. The law also provides the standard to calculate the number of educators assigned to each school depending on the number and types of classrooms, either special or general education classrooms (Ministry of Internal Affairs and Communications, 2011a). The latest amendment in 2011 decreased the maximum classroom size for first graders to 35 (Ministry of Education, 2011b).

(6) . Currently, instruction in special support rooms is not considered “special education” in Japan. Special support rooms are usually staffed by classroom teachers during their planning time, part-time teachers, or teaching assistants.

(7) . Under the law that determines teacher certification, educators who teach in classrooms at special education schools are required to hold a special education certificate of their specialization, such as hearing and visual impairments, intellectual disabilities, and physical disabilities, in addition to a general teaching certificate. However, schools are allowed to postpone implementing this requirement (Ministry of Internal Affairs and Communication, 2008b). During the 2011-2012 school year, 70% of educators at special education schools held special education certificates for the disabilities that children they worked with had (Ministry of Education, 2012a). Further, the law does not require certification for teaching in special education classrooms at general public schools. It is typical that children in special education classrooms are taught by teachers who only have a regular teaching certificate.

(8) . Children may receive special education services at resource rooms in other schools when their schools do not offer needed services.

(9) . Any child experiencing difficulties in learning in a general education classroom may be referred to receive small group or individual instruction at the Challenge Room. The only requirement during this school year was parental permission.