Martiny Kristian Moltke
Department of Media, Cognition and Communication, Center for Subjectivity Research, University of Copenhagen, Njalsgade 140-142, 2300, Copenhagen S, Denmark.
Helene Elsass Center, Holmegårdsvej 28, Charlottenlund, 2920, Denmark.
Med Health Care Philos. 2015 Nov;18(4):553-65. doi: 10.1007/s11019-015-9625-x.
During recent decades various researchers from health and social sciences have been debating what it means for a person to be disabled. A rather overlooked approach has developed alongside this debate, primarily inspired by the philosophical tradition called phenomenology. This paper develops a phenomenological model of disability by arguing for a different methodological and conceptual framework from that used by the existing phenomenological approach. The existing approach is developed from the phenomenology of illness, but the paper illustrates how the case of congenital disabilities, looking at the congenital disorder called cerebral palsy (CP), presents a fundamental problem for the approach. In order to understand such congenital cases as CP, the experience of disability is described as being gradually different from, rather than a disruption of, the experience of being abled, and it is argued that the experience of disability is complex and dynamically influenced by both intrinsic and extrinsic factors. Different experiential aspects of disability- pre-reflective, attuned and reflective aspects-are described, demonstrating that the experience of disability comes in different degrees. Overall, this paper contributes to the debates about disability by further describing the personal aspects and experience of persons living with disabilities.
近几十年来，健康与社会科学领域的诸多研究者一直在争论残疾对一个人意味着什么。在这场争论的同时，一种相当被忽视的方法发展起来了，主要受到被称为现象学的哲学传统的启发。本文通过主张一种与现有现象学方法不同的方法论和概念框架，构建了一个残疾现象学模型。现有方法是从疾病现象学发展而来的，但本文通过研究先天性残疾的案例，即一种名为脑瘫（CP）的先天性疾病，来说明这种方法面临的一个基本问题。为了理解像脑瘫这样的先天性案例，残疾体验被描述为逐渐不同于而非中断了有能力的体验，并且认为残疾体验是复杂的，受到内在和外在因素的动态影响。本文描述了残疾体验不同的方面——前反思、协调和反思方面，表明残疾体验有不同程度。总体而言，本文通过进一步描述残疾人的个人方面和体验，为有关残疾的争论做出了贡献。
