照護隱性障礙子女的道德工作：醫療模式、污名與預期

"Caring for Children with Invisible Disabilities as Moral Work: Medical Model, Stigma and Anticipation"

在當代，愈來愈多兒童被判定為社會、情緒與行為異常，為親職照護帶來複雜的挑戰。本研究使用「隱性障礙」來統攝這些異質病況，並深入訪談50 位主要照護者，檢視家長如何處理這類存在處境的特殊性—以偏離常規為主要表現、與精神醫療的親近性，以及被預期偏差的未來—所帶來的道德要求。我發展「道德工作」概念，來分析家長據以從事的三種不同脈絡但彼此關聯的照護實作：分辨孩子是病理或差異以協商醫療模式，管理疾病污名與維護孩子的自我，以及透過日常教養來應對未來的「壞」預期。雖然照護本質上就是道德的活動，但是當面對高度負載價值或規範的病況時，道德工作概念有助於揭示行動者必須如何回應這些經常是負面的意義，從而形塑其照護軌跡。這樣的親職照護沒有標準教養腳本可依循，而是有賴家長作為道德行動者，努力在醫療論述、社會處境，以及對子女的愛中，持續判斷、試驗與追求對孩子來說可能更「好」的結果，從而彰顯出親職、病痛與受苦作為道德的課題。

"This study is situated in the contemporary phenomenon in which children are increasingly being diagnosed with social, emotional and behavioral disorders (SEBD), which bring both unique and common challenges to their families. I draw upon the category 'invisible disabilities' to encompass these heterogeneous conditions, which in this study include attention defi cit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), learning disability, emotional and behavioral disabilities, and other psychiatric diagnoses. Through in-depth interviews with fifty primary caregivers, I examine how parents respond to the moral requirements posed by the characteristics of such SEBDs, that is the deviations from the norm as the main symptoms, the association with psychiatric care, and the anticipation of a deviant future. This study develops the concept of 'moral work' to analyze three diff erent but related types of care practices: identifying the child's differential attributes and negotiating the medical model, managing the stigma of psychiatric disorders and protecting the child's discreditable self, and preparing their children to deal with an anticipated “bad” future. While caregiving is inherently a moral activity, when faced with highly value- or norm-laden conditions, the concept of moral work helps to reveal how these actors respond to these often-negative meanings, thus shaping their care trajectory. Such parental care cannot follow a standard script, but relies on parents as moral agents who strive to judge, experiment, and pursue outcomes that may be 'better' for their children as they continually navigate between medical discourses, social situations, and love for their children. Even though it may not challenge the oppressive system, parents’ actions are always directed toward the moral transformation of self, the child, and even others, and open up possibilities for reshaping their lifeworld. The complexity of these moral endeavors underscores the moral lessons of parenthood, illness, and suffering."