How to develop a phenomenological model of disability

Abstract

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.

Playing together without communicating? A pre-reflective and enactive account of joint musical performance

“…Other similar, systematic accounts can be found in the work of Petitmengin on the 'explicitation interview' and Varela and colleagues on 'neurophenomenology', and good examples can be found in the work of Ravn and colleagues (Legrand & Ravn, 2009;Ravn & Christensen, 2014;Ravn & Hansen, 2013), Martiny (2015), and Høffding and Martiny (2015). These accounts show that interviewing with the aim of understanding experience is a second-person method different from third-person methods usually used in psychology labs and that, as an interviewer, one is co-generating the knowledge obtained.…”

Yes We Can! A Phenomenological Study of a Sports Camp for Young People With Cerebral Palsy

“…Even if bodily experiences can be different for people with CP, the difference is a matter of degree rather than a disruption of the experience of being abled (see Martiny, 2015 for further elaboration). In fact, we will argue that working with people with different kinds of embodiment can shed light on general aspects of bodily subjectivity.…”

“…As an alternative to the medical and social models, authors have argued for the relevance of taking a phenomenological approach to disability (Carel, 2013;Peckitt, Inhara, & Cole, 2013;Svenaeus, 2009), and Martiny (2015) has on this basis proposed a phenomenological model of disability. This model focuses on first-person experiences of living with disabilities and asks what the experience of it is like.…”

Is It Possible to “Incorporate” a Scar? Revisiting a Basic Concept in Phenomenology

“…Whereas medicine, generally speaking, considers patients' bodies as things, objects, or defect machines that can be repaired, phenomenologically oriented studies show that experiences of health, or able-ness, and of illness and disability cannot simply be reduced to physical ''normality'' or ''abnormality''. Phenomenology of health and illness therefore claims that we should also take into consideration patients' lived experiences of their bodies (Carel 2011;Leder 1992;Svenaeus 2009;Toombs 1995;Aho and Aho 2009;Zaner 1981;Martiny 2015;Bullington 2013). Accordingly, the majority of present phenomenological studies on healthy, ill, able, and disabled bodies fall back on the distinction between the objective body (Körper) and the lived body (Leib).…”