The Weight of Living: Autonomy, Care, and Responsibility for the Self

Abstract

What control should we have over our death? In this paper, I re-examine the way this question has been approached in the euthanasia debate by exploring what it means to take responsibility for one’s own life, especially in the face of mental disability. I do so through presenting anthropological research on the role of care, autonomy, and responsibility in L’Arche—a Christian organization in the United Kingdom in which people with and without learning disabilities share community— to identify, contextualize, and challenge central assumptions about agency in the euthanasia debate.

Keywords:

• Learning disability
• responsibility
• autonomy
• care
• social anthropology
• euthanasia
• agency

Acknowledgments

I am extremely thankful to Lidia Ripamonti who organised the conversation that this paper arose out of and aims to contribute to, welcomed me into it so warmly, and was so supportive and generous a presence throughout the process of publication. And I am very grateful, too, to those in L'Arche who introduced me to Rachel, to the riches and complexities of care, and to new ways to think through my research: in particular, in this instance, to those I here call Pri and Elina.

I would like to dedicate this paper to Rachel. I wrote it while she was as vivacious as ever. I last saw her just before Christmas 2018 when she was chatting away, continually engaging me and everyone around her with a characteristic mixture of compassionate concern, commanding direction, and delighted laughter. A few weeks before this paper was due to be published she died suddenly and unexpectedly. In the days since, I, like hundreds of people around the world who knew and loved her, have been mourning for her – remembering the intense vivacity or her laugh, her touch, her smile.

In this context, this paper now seems an even more inadequate attempt than it already did to mark my gratitude to her and to honour what an extraordinary person she was. My only hope is that it can communicate something of what she meant and taught to so many, and to me in particular: of her vulnerability to the many things life threw at her; of the raw and charismatic power of her indomitable tenacity, charm, and bravery in the face of them; and of the depth and extent to which she loved others with so much commitment, concern, and forgiveness and to which she was wholeheartedly loved in return.