走過鐵鞋歲月：台灣四、五零年代小兒麻痺患者生命敘事

Abstract

本文係屬深度報導，探討台灣1950至1960年代小兒麻痺患者的生命歷程與社會變遷。透過16位小兒麻痺患者、2位患者家屬、3位醫療人員及2位倡議組織代表的深度訪談，系統性記錄這個世代的集體記憶與個人敘事。

研究發現，這群患者的生命軌跡深刻反映台灣社會從傳統到現代的轉型過程。在「醫療化童年」階段，疫苗費用成為階級篩選機制，地理位置決定醫療可近性，集中照護制度雖提供醫療資源卻造成家庭分離創傷。在「歧視運作機制」中，從家庭污名化、教育體制排除到就業市場天花板，形成系統性的社會排斥。在「親密關係挑戰」裡，身障者面對婚戀權利的質疑與自我懷疑，逐步爭取愛與被愛的權利。

值得關注的是，這群患者從「受助者」轉變為「推動者」，成為台灣障礙權利運動的先鋒。1987年解嚴後，他們以「一一九拉警報，快伸手救殘胞」為號召走上街頭，推動《殘障福利法》修訂，建立無障礙環境，爭取教育與就業權益。其獨特的組織能力與共同經歷，使他們能有效結合學習、覺醒與行動，成為台灣社會進步的重要推手。

進入人生下半場，這群患者面臨「後小兒麻痺症候群」的挑戰，從「克服障礙」轉向「與障礙共存」的人生哲學。他們在各行各業發光發熱：創立倡議組織、投入長者關懷、成為到宅醫師、發明助人器材等，展現不完美卻完整的人生可能性。

本研究突破過往勵志敘事的框架，以制度分析與歷史縱深探討疾病與社會結構的互動關係。這群「無法取代的一代人」不僅見證台灣公衛體系建立、社會福利發展，更以自身經驗推動社會從排除走向包容。他們的生命故事成為理解台灣現代化進程的重要線索，對當代障礙研究、社會政策與公民社會發展具有重要啟發意義。

This report examines the life journeys and social transformations of polio survivors in Taiwan from the 1950s to the 1960s. Through in-depth interviews with 16 polio survivors, 2 family members, 3 medical professionals, and 2 representatives from advocacy organizations, this report documents the collective memory and personal narratives of this generation.

Analysis shows that the life trajectories of these survivors reflect Taiwan's transition from a traditional to a modern society. During the “medicalized childhood” phase, the cost of vaccination became a mechanism for class-based screening, while geographical location determined access to healthcare. Although centralized care provided medical resources, it also caused traumatic family separations. The “mechanism of discrimination” operated systemically—from family stigmatization and exclusion from the education system to glass ceilings in the job market—creating a cycle of social exclusion. In the “challenges of intimate relationships,” people with disabilities grapple with societal questioning of their right to love and be loved, alongside feelings of self-doubt, as they gradually fought to claim these rights.

Notably, this group of survivors transformed from “receiving aid” to “driving change,” becoming pioneers of Taiwan's disability rights movement. After the lifting of martial law in 1987, they took to the streets with the rallying cry, “119, sound the alarm! Reach out and save our disabled brethren,” advocating for amendments to the Disabled Welfare Act, the establishment of accessible environments, and the fight for educational and employment rights. Their unique organizational skills and shared experiences enabled them to effectively integrate learning, awakening, and action, making them crucial drivers of social progress in Taiwan.

Now in the latter half of their lives, these survivors face the challenges of post-polio syndrome, shifting their life philosophy from “overcoming disability” to “.” They have thrived in various fields: founding advocacy organizations, engaging in elderly care, serving as home-visit doctors, and inventing assistive devices, demonstrating the potential for an imperfect yet complete life.

This report moves beyond the conventional narrative of inspirational stories, using institutional analysis and historical depth to examine the interaction between disease and social structures. This “irreplaceable generation” not only witnessed the establishment of Taiwan’s public health system and the development of social welfare, but also drew on their own experiences to advance society from exclusion toward inclusion. Their life stories provide valuable insights into Taiwan’s modernization process and offer significant contributions to contemporary disability studies, social policy, and the growth of civil society.