Gavin Mooney has reviewed this book by Western Australian disability advocate and activist Erik Leopldt. Erik's book is based on his PhD thesis.
A Book Review by Gavin Mooney
Erik Leipoldt (2010) Euthanasia and Disability Perspective: An Investigation in The Netherlands and Australia VDM Verlag Dr. Müller Aktiengesellschaft, Saarbrücken
Each of the two central issues in this book - euthanasia and disability - is big in itself. Bringing the two together is a monumental task and especially when this is set in a values framework. The author succeeds in his efforts to do this and in a way which is both accessible and challenging.
The purposes of the study reported in this book were (p39) `to discuss Dutch and Australian disability perspectives towards euthanasia and physician assisted suicide; and to find how the life experiences of the informants [people with quadriplegia] ... may illuminate these perspectives'.
Yet to me the central theme of the book is not euthanasia as such nor indeed disability. What the book questions in debating these themes is what autonomy is and whether it merits being seen as so much of an individualistic phenomenon as it so often is, at least in this neo liberal world in which so many of us live. As Leipoldt argues `individual autonomy is the dominant discourse of our age'.
Without disagreeing I wonder if things are not changing. I have in the past been much struck by the work of the likes of Catriona McKenzie, Diana Meyers and Natale Stoljar  on relational autonomy and the idea of `community autonomy'. Despite the efforts of so many economists today (this reviewer is an economist) - particularly market economists - and many liberal philosophers to see us all as free floating atoms, that depiction of human beings just somehow does not ring true. We are social animals, we rely on others to some extent and maybe even take our identities in part from our interactions with others. And the interdependency of peoples across the globe has been heightened yet further by both the Global Financial Crisis and the threat of climate change. OK the impact of these on government policies and in turn on human relationships have not really percolated through yet. But this is one `trickling down' that I am confident will trickle down.
Certainly Rawls' placing of individuals behind his veil of ignorance was simply a philosophical construct to aid understanding. Yet it is so false that one has to question how valuable that device is in reaching any sort of understanding of what it means to be a person. Behind a veil of ignorance or a free floating atom? In an odd sense, much of a muchness and much of an unreality.
So for Leipoldt to look at euthanasia through the eyes of 28 people with quadriplegia in Australia and the Netherlands provides not only a novel view but one that in turn challenges the notion of individual autonomy in a most useful fashion. Whatever else, no one reading this will ever again see autonomy in quite the same way - unless maybe a person with disabilities.
The views of people with quadriplegia on this issue have not been examined before which is a quite startling revelation in itself. Leipoldt suggests (p38): `The perspective of people with disabilities may be able to contribute new ... aspects to the euthanasia debate. Major physical, social and psychological changes and challenges arise for a person who acquires a significant disability like quadriplegia.'
On the question of autonomy and individualism the shift to more of the latter is highlighted by one respondent (p 170): `people are becoming more assertive and demand more. I think that if you look ten years ahead people's autonomy will go further ... I think society will become more and more individualistic.'
The book is insightful on the issue of dependency with one response (p 205) suggesting that `dependency gives a very deep relationship with people and you'. And again (p 209): `How do we look at things like interdependence, that are the bigger issues? Because it doesn't matter how dependent or independent you are if you have people around you and you are part of what's happening and contributing to that then whether you can do it on your own isn't the issue.' Wonderfully for me, issues of reciprocity, mutuality, participation, sharing and caring shriek out from these pages.
There is a sense in which what this book tells us primarily in capturing the views of a group who are in many ways dependent and vulnerable as people with disabilities are two things. First interdependence and dependence are not negative traits; and second in some sense or other to be complete human beings we need to be interdependent and dependent and we need to recognise that need. These are particularly interesting issues in the very specific context of the main thrust for the author of this book i.e. euthanasia and disability. But for me the book shows that worshipping at the altar of individual autonomy or even individualistic autonomy is to bow down before false Gods. Such autonomy is almost certainly not attainable and, even if were, it aint worth attaining.
This is a powerful book at many levels.
1. C Mackenzie and N Stoljar (eds) 2000. Relational Autonomy. Oxford: OUP.