eight - Living and ageing with disability: Summary and conclusion

Summary

Introduction

This chapter gives a summary of the main results and perspectives presented in this volume, the aim of which was to discuss what it means to live a long life, to age and to become old for people who have disabilities acquired early in life. Key questions that have been discussed are: what does it mean to live a long life and age with a disability, either physical or mental? What are the implications of ‘becoming old’ for people who have had extensive disabilities for many years? What are the available formal and informal care resources? What does it mean to be an ageing parent and to continue to care for an adult disabled child? How are we to understand couplehood in the case when both parties are disabled? This book has adopted an overall lifecourse perspective when addressing these questions. Our intention in this final chapter is to point out the main contributions of the book, and to draw together some of the arguments presented to provide ideas for further development in the study of disability and ageing from a lifecourse perspective.

A long life with disability

How can we grasp what a long life with disability means? We have tried to explore this question from somewhat contrasting analytical perspectives and with different methodological approaches, and have found several answers rather than a single clear-cut one. An overall conclusion that can be drawn from the chapters in this book is that a long life with disability does not take one form but may have multiple shapes, depending on age at onset, time with disability, location in history, but also depending on the type and cause of the disability together with other factors such as socioeconomic position, whether the disability was visible or invisible, and societal attitudes surrounding it. We have underlined the relevance of the lifecourse approach since it can give insights into the illness and disability in its multiple shapes, and its impact over time on different phases of life. As we have seen in the various chapters, long lives with disability may also be permeated by particular types of involvement, such as political involvement, or by mutual caring roles, and, in the case of ageing parents, by caregiving over many years.