Home Modifications and Ways of Living Well

Abstract

People living with a disability or illness and health care professionals often have different perspectives on what needs to be done, and why, in order to create a life they can recognize as good. Focusing on home modifications, I explore the enactment of diverging perspectives on the desired good. I show how one couple living with the effects of motor neuron disease in Wales tried to create a way of living. Drawing from a narrative-based study, I explore what happens when there is an interaction of different perspectives of what is considered to be a desirable outcome. I argue that the construction of some expectations as needs, and others as desires, serves to subjugate people to certain technologies. These technologies are those deemed necessary, following a neo-liberal language of cost-effectiveness where desires can be seen as liabilities.

Keywords:

• disability
• intersubjectivity
• knowledge legitimation
• motor neuron disease
• narratives

ACKNOWLEDGMENTS

The study that provided the empirical material for this article was approved by the research ethics committee of the School of Healthcare Sciences, Cardiff University. Some personal details of the participants and all names have been changed to protect anonymity. Different publications use different pseudonyms to refer to participants, to reduce the chance of tracking down multiple quotations to a single participant. I wish to thank the editor of this journal, and the three anonymous reviewers, for very helpful comments during the review process. I also wish to thank Margaret McGrath for her critical feedback on an earlier draft of this article. I am grateful to Dave and Marion for sharing their story with me.

Additional information

Notes on contributors

Dikaios Sakellariou

Dikaios Sakellariou is a lecturer at the School of Healthcare Sciences, Cardiff University, United Kingdom. He has co-authored and co-edited the volumes A Political Practice of Occupational Therapy and Occupational Therapies without Borders (with Nick Pollard and Frank Kronenberg), and Politics of Occupation-Centred Practice (with Nick Pollard), on the enactment and enablement of daily life and the experiences of disability and disablement.