• 研究生：鄭雅之
• 論文名稱：當不標準的病人遇到醫療專家-障礙者醫用關係的社會學分析
• 指導教授：張恆豪
• 關鍵詞：障礙、醫用關係、社會模式、身體經驗、健常能力偏見

• 專業醫療體制往往視「障礙」為「疾病」、「障礙者」為「病人」。然而，障礙者的身體、心理損傷往往具有不可康復性，無法透過醫療知識與技術的介入使障礙者恢復「正常」；此外，障礙可能常引起續發症狀、共病現象，不容易被醫療提供者治療或發現。這些特徵與醫療觀點下對「病人」的假設相悖，因此，障礙者在專業醫療體制下成為「不標準的病人」。本研究將從障礙者作為醫用者的角度出發，探討障礙者在面對專業醫療體系、醫療模式觀點時的回應與互動過程，以及影響這些行為的因素。

透過深度訪談12位成年行動不便障礙者、14位成年智能障礙者與其主要照顧者、有障礙經驗的醫生與機構照護人員，加上實際陪同就醫的經驗觀察。我們發現，第一，從物質層面的醫療儀器、設備到診斷流程與治療方式皆以「標準病人」作為醫療資源使用者的預設下設計，忽略了障礙者的醫療需求、身心差異與使用情境；第二，醫療體制專業分工過細忽略障礙者容易引發續發症狀、共病現象的特性，或者受制於健保體制的規定無法針對障礙者生、心理的差異給予適當的預防與治療而影響障礙者的健康；不僅如此，醫療人員自身的認知、健常能力的偏見與意識型態亦會影響他們對待障礙病人時採用的態度、行為，以及提供的資訊與治療方式，進而產生不同的互動結果。然而，在進入醫療體制與面對醫療人員時，障礙者能透過自身的身體經驗、與醫療器具的互動感受、障友團體相互交流取得的資訊，以及照顧者能透過長期的照顧經驗、知識與醫療專業知識相互抗衡。障礙者的身體經驗讓障礙者在求醫過程中展現醫用者多元的行動樣貌，除了發聲、反抗不適當的醫療處置，參與醫療過程、協助醫療人員完成醫療程序、指導醫生開診斷書外，甚至能降低不必要的醫療風險與傷害。

• Medical professionals and institutions usually presume a “normal body” and standardized patients. People with disabilities tend to be regarded as “patients” and are expected to to play the “sick role” in medical practice. Thus, the body and life experiences of disabled people are usually ignored by medical professionals. This study explores disabled people’s experiences in medical institutions through interviews with twelve adults with mobility disabilities, fourteen adults with intellectual disabilities and their caregivers, and two doctors with mobility disabilities. This study shows that when people with disabilities use medical care services, they experience not only social barriers, such as transportation issues, and environmental barriers, but also ignorance about impaired bodies in standardized medical practice and the social prejudice of medical professionals. Medical doctors might ignore the impacts of impairments on disabled people and make misjudgments in diagnosis or treatment. However, the experiences and knowledge of disabled people often enables them to use various strategies to negotiate with physicians in the doctor-patient interaction, and even to assist physicians in completing medical procedures. For people with intellectual disabilities, the care experience and knowledge of caregivers can help medical professionals to understand the medical conditions of these patients and offer appropriate treatments. Finally, this study suggests that medical professionals should take the unique body and life experiences of disabled people into account in their medical practice.