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How to develop a phenomenological model of disability

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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.

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Notes

  1. The term ‘illness’ is typically used in the phenomenological literature on illness to refer to more serious, chronic or threatening illnesses, such as multiple sclerosis or cancer. This is also how I’ll use the term in this paper but, as we will see, Sartre and others acknowledge the phenomenological significance of looking at less serious and more common illnesses, such as headaches or the flu.

  2. Thanks to the reviewer for illustrating the need of making this point more explicit.

  3. Thanks to the reviewer for making me aware of this implicit point in the description.

  4. Thanks to Shaun Gallagher for raising this point (personal conversation).

  5. Translated from German by J. Taipale (2012: 54): “Ich habe als Erstes Normalität innerhalb meines solitären Ego”. Thanks to Taipale (personal conversation) for alerting me to this Husserlian point of distinguishing between two kinds of normality.

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Acknowledgments

I wish to thank Dan Zahavi, Shaun Gallagher, Simon Høffding, Joona Taipale and Adele-France Jourdan for comments on earlier drafts, as well as the Center for Subjectivity Research for critical discussions of earlier drafts of the present paper. In relation to discussions of the practical and societal implications of the ideas in the paper, I wish to thank Peder Esben Bilde, Jacob Nossell, Christian Sønderby Jepsen, Thomas Corneliussen and Jeppe Hein.

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  1. Department of Media, Cognition and Communication, Center for Subjectivity Research, University of Copenhagen, Njalsgade 140-142, 2300, Copenhagen S, Denmark

    Kristian Moltke Martiny

  2. Helene Elsass Center, Holmegårdsvej 28, Charlottenlund, 2920, Denmark

    Kristian Moltke Martiny

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Correspondence to Kristian Moltke Martiny.

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Martiny, K.M. How to develop a phenomenological model of disability. Med Health Care and Philos 18, 553–565 (2015). https://doi.org/10.1007/s11019-015-9625-x

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