從生態系統觀點探討肌萎症患者之職涯韌性與韌力

Exploring Career Resilience and Resiliency in Individuals with Spinal Muscular Atrophy: An Ecological Systems Theory Perspective

本研究盼以韌性、韌力及生態系統觀點，瞭解影響身障者職涯因素。本研究邀請三位肌萎症患者，為理解其職涯發展歷程相關經驗的意義與詮釋，採敘事研究之分析進行探究。本研究發現如下：（1）鉅視系統對身障者的污名所衍生出的刻板印象、偏見與歧視為影響身障者職涯歷程的核心因素，並深植於各系統中；（2）現今社會直接歧視情形雖減少，但大眾仍可能受刻板印象與偏見影響，過度關注於「障礙」而在無意間傳達微歧視；（3）「自立生活」為身障者職涯歷程中不可或缺的重要信念，而「工作」能使其更接近自立生活的目標；（4）韌性展現於身障者回應環境的過程，身障者在與系統互動間嘗試協調並發展因應方式，而此求職與就業的適應歷程，也是身障者替自己賦權的方式。若生態系統各層面皆能互動並做出回應與調整，才能形成良善的循環，真正改善身障者的職場與生活環境。根據研究發現，提供身心障礙者及其系統與助人工作者相關職涯建議。

 

From the perspective of resilience and ecological system, this study aimed to understand factors that influenced the career of people with disabilities. Three people with muscular dystrophy were invited as research participants. Narrative research methods, particularly holistic-content and categorical-content analysis approaches, were adopted to achieve a better understanding and interpretation of their unique experiences related to career development. Research findings were stated as follows:

Stereotypes, prejudice, and discrimination that resulted from the stigma deeply rooted in macrosystems against people with disabilities were the core factors affecting their careers. Although there was less manifest discrimination in today’s society, the general public might still be influenced by stereotypes and prejudices, thus focusing too much on the "disabilities" and expressing "microaggressions" unintentionally. "Self-reliance" was considered an important value for people with disabilities in their careers, and "work" served as a means of moving closer to the goal of living independently. Resilience was manifested in the way people with disabilities responding to their surrounding environment, they strived to adapt themselves and developed coping strategies in their interactions with the society. Moreover, people with disabilities felt empowered simultaneously in the process of job-seeking and achieving employment security.

It is only when all levels of the ecological system were analyzed and accommodated to the needs of individuals with disabilities that a virtuous cycle could be constructed to truly establish a friendly and discrimination-free workplace and living environment.

Based on research findings, suggestions relevant to career development for individuals with disabilities, employers, helping professionals, as well as future research were provided.