5 - Disabling bodies

Summary

Introduction

I now move to consider the empirical study that informs this book in this and subsequent chapters. This is the first of two chapters in which I address the research question, ‘How do older people experience disability and processes of disablement, and what meanings do they make of those experiences?’ The context for the study is set out in the previous chapters, which also suggest why this was identified as a key research question. Part of the context involves how disability experienced in older age tends to be understood primarily as impairment or as an individual, medicalised issue. Furthermore, there is a need to understand more about how people interpret and negotiate the changes involved.

In this chapter, I first introduce the empirical study and consider some theoretical concepts by way of background. Then, I discuss the study's findings. The chapter addresses how participants experienced onset of disability, or greater disablement, in their bodies. It shows that this could involve suffering, loss, uncertainty about daily life and the future, and forced abandonment of activities. This could be linked to a sense of finitude and could involve fundamental rethinking about one's self. This was often so even when disablement (and worsening impairment) occurred gradually and at a stage in life when the participants considered it ‘normal’, ‘natural’ or ‘on time’. This is significant because the normative connection between impairment and older age leads to assumptions that onset of disability in later life might be experienced as anticipated, not disruptive, and that the experience of ageing with disability might be one of continuity, not change.

Also significant is that participants did not define themselves by their bodies or wish to be defined by them. They concentrated on what they could still do and sought ways to perceive a continuous sense of self, as well as meaning and value in their lives. Participants did this in interaction with dominant discourses of ageing, and, indeed, of ablebodiedness, which shape subjective interpretations. Chapter 6 will show that bodily change was not the only thing that contributed to ‘disability’, which was also experienced in interaction with contexts such as inaccessible physical environments or the disabling reactions of others. That bodies could be perceived as disabling or limiting (or more disabling or limiting for people ageing with disability) is not surprising. Less obvious are subjective meanings made of those experiences and responses to them.