「自分のシナリオを演じる」―同胞に障害のあるきょうだいの障害認識プロセス

Performing Their Own Scenario：The Process of Recognition among Siblings with Brothers or Sisters with Disabilities

要旨

　身体・知的障害のある同胞をもち, 成人に達した29名のきょうだいに聞き取りを行い, きょうだいが同胞の障害をどうやって知り, どのように意味づけ, それに応じてどのように対応して成長してきたのかについてgrounded theory approach を使って分析した. その結果, きょうだいは両親のしつけの内容と, 他の子どもの状況とが異なることにより, 自分が障害者のきょうだいであるという認識をもち始める. また, 社会の偏見を向けられた時から, 同胞の障害を恥ずかしいと認識するようになり, 高校生頃より同胞の障害について納得のいく意味を探し始める. そして, 20歳前後で障害の意味づけや, その意味づけにより自分がとる行動「自分のシナリオ」を作成し, 同胞への介護を行い, 同胞とよい関係を築くようになる. しかし, 中には同胞の障害を恥ずかしいと認識しなかったきょうだいや, 納得のいく意味を探さなかったきょうだいもいた．

Abstract

　Interviews were conducted with 29 adult siblings of the handicapped and the mentally retarded. They were analyzed using a grounded theory approach to investigate how these siblings learn about, assign meaning to, and cope with their brothers' or sisters' disability and how the situation affected their own personal development. The results suggest that the siblings first realized there brothers or sisters were disabled when they perceived the distinction between how their parents treated them and what the situation was like for other children. When faced with social prejudices, they became embarrassed and more aware of their brother or sister's disability, and from about high school they began to truly understand what it meant. As a result, at around the age of twenty they could understand the disability better and adopted appropriate behavior based on their own situation; a situation in which they provided care and built strong relationships with their siblings. However, there were some did not think of their disabled siblings as shameful or did not try to better understand the situation.