兒童發展的風險治理：發展遲緩、監管網絡與親職政治

Abstract

在台灣，早期療育在1993年被納入〈兒童福利法〉，使得「發展遲緩」作為未來可能導致身心障礙的風險，成為必須儘早發現並予以治療的對象。這種新主體�目標的出現，一方面標誌出：台灣的兒童健康政策已從早期強調傳染病等生理疾患防治，擴張到以全體兒童為對象的身心障礙預防；另一方面，它也代表國家對於嬰幼兒及其家庭功能更深層與全面的介入。本研究追索這種我稱之為發展風險體制的形構過程，並檢視日常育兒生活中的親職以及對於遲緩的療育經驗，如何交戰於這樣的社會變遷。使用的研究方法為多場址的民族誌，資料收集技法包括文獻檔案分析、參與觀察，以及訪談各領域的專業者（15位）與育有十歲以下幼兒的主要照顧者（58位）共73位。 論文的第一部分首先梳理台灣早期療育的實作體制，如何從原先以「身心障礙兒童」為對象，轉向並生產出「發展遲緩兒童」，並透過知識生產與監管實作，將發展遲緩定位為全部嬰幼兒人口的潛在風險。這個表面上看似符合醫療化的經典案例，卻展現出不同的驅動機制、策略，以及社會組織安排。藉由追索這段充滿隨遇的社會政治過程，我論證了一種新的發展風險體制如何萌生，生產出與有別於身心障礙體制的療育主體、目標、權力技術，以及對於疾患的修辭策略，與為行動者設定的社會腳本。我同時也指出，這種風險體制具備集體治理的特殊性質，從而需要借助各種具現正常性的科學技術工具，來結構不同社會界對孩子的發展凝視，穩定化跨界監管的實作，確保所收集個別兒童發展資料的有效性。

第二部分轉向微視層次，並以晚近發展出的常民知識與醫用關係研究視角與概念，來補足傳統醫療化典範或治理研究中難以論明的主體性。由於孩子的發展狀況作為最根本的治理對象，座落在正常到障礙光譜中的不同位置，將左右家長如何與風險體制相互協商。而行動者總是同時置身在多重的生活世界與交錯的實作體制之中，他們的風險認知與管理策略必然會是多層次的。特別是對遲緩孩子的家長來說，台灣獨特的多線並行且欠缺整合的療育體制，使得家長對孩子遲緩身體的管理，轉化為如何控制療育不確定性的問題。因此家長不只是療育資源的使用者，還必須透過細密的連結工作，來扮演從服務生產端到使用端之間的運籌角色。易言之，這些深深參與在風險體制中的家長，可能並未挑戰制度治理的最終目標，但他們的行動樣態卻超越了實作體制原先設定的社會腳本。

最後，本研究可能具有的貢獻在於：面對當代社會變遷中的健康與疾患議題，使用風險治理的架構，可能比傳統的醫療化典範更能分析當代社會如何回應正常�異常邊界日益模糊的身體爭議。而親職做為自我管理風險的脈絡，有其獨特的道德性、情感化與個體性特質，有助於深化既有對於治理技術、常民專業，以及實作體制與行動主體如何相互構成又彼此對張的理解。論文最後我也針對現行的早期療育政策與實作，提出包括知識主張與專業發展的具體建議。

In Taiwan, “Early Treatment” was embedded into the Child Welfare Law, defining “developmental delay” as a risk factor in disability and thus a target in need of treatment as early as possible. This new subject/object marked the expansion of child health policies in Taiwan from control of contagious diseases to disability prevention for all children. This dissertation traces the process of assembling what I call “the regime of developmental risk,” and examines how parenting in daily child-rearing and treatment for developmentally delayed children engage deeply with this social transformation. My research was conducted as a multi-site ethnography, and gathered materials through document analysis, participant observation, and interviews with fifteen professionals across various domains in addition to fifty-eight caregivers rearing children under the age of ten. In Part I of this dissertation, I analyze the transformation of the target of Early Treatment in Taiwan from “children with disabilities” to “children with developmental delays.” Although this process seemed to be a typical case of “medicalization,” it developed very different driving engines, strategies, and social arrangements. By tracing a social-political process full of contingencies, I demonstrate how a new regime of developmental risk emerged. Compared to the medicalized regime of disability, this risk regime produced very different subjects, purposes, power techniques, rhetoric strategies, and social scripts for actors. I argue that this risk regime is characterized by collective governance. Therefore, it needs various scientific claims and technologies to structure the developmental gaze at children for different actors, stabilize the surveillance practices across heterogeneous social worlds, as well as ensure the validity of individual children’s information as gathered by different agents. The second part of the dissertation turns to the micro level. I use concepts of lay knowledge and user-professional relationships to elaborate the subjectivity issue rarely articulated in a traditional medicalization thesis or government framework. In the continuum between normalcy and disability, different locations assigned to each child would influence mostly their parents’ negotiation space with the risk regime. Because any social actor necessarily lives in multiple life worlds and faces intersecting practice regimes, her/his risk perception and management must have multiple levels. Especially in the case of parents with developmentally delayed children, the Early Treatment system in Taiwan appears hydra-headed, without integration or even consensus. For them, the management of child’s delayed body always confront with various issues of treatment uncertainty. As a result, parents not only use treatment resources, but also need to do sophisticated “articulation work” to ensure the whole treatment project for their specific child. In my opinion, they are a kind of “logistician.” Although parents’ engagement might not challenge the final target of this institutional governance, their actions indeed go far beyond the original social script set by the risk regime. Finally, the contributions of this dissertation may be as follows: Facing the ever-changing issues of health and disease in present society, a framework of risk governance may be more appropriate than a medicalization paradigm to analyze how our society responds to various body controversies with blurred boundaries between normalcy and abnormalcy. In addition, parenthood, as the context of risk management, is characterized by an entanglement of morality, emotions, and individuality. Taking these peculiarities into consideration will enrich and deepen our understandings of governance techniques and lay expertise, as well as the co-production of, and contradiction between, practice regime and agent.