Realizing autonomy: the phenomenology of independence and interdependence while living with Duchenne muscular dystrophy

Abstract

This research took place in an independent living neighborhood (ILN) for people with Duchenne muscular dystrophy. The study is based on in-depth open interviews with Eytan (aged 44), who has lived in the ILN for 27 years. Eytan’s narratives reflect the challenges posed by his dependence on his caregivers and the resulting interdependent relationship. Drawing on a relational tradition within disability studies, we argue that autonomy and care are completely entwined in the lives of people with total paralysis like Eytan. We use reflexive writing and descriptions of bodily experience to capture the complexity of Eytan’s experience regarding this matter.

Keywords:

• Duchenne muscular dystrophy
• qualitative methodology
• interdependence
• autonomy
• reflexivity
• progressive illness

Acknowledgment

The authors would like to thank Itamar Haritan for editorial assistance and his thoughtful remarks.