Lives Not Worth Living: Rethinking Autonomy and Assisted Dying in the Light of Profound Disability

Abstract

Autonomy in dying, as in living, is often considered the mark of a free and self-affirming human being. However, this idea clashes with the daily reality of many severely disabled people who live in complete dependency but not without dignity, joyful relationships, and meaningful participation in the lives of others. The author looks at the phenomenon of an anticipated death from a philosophical perspective and argues against overstating the importance of autonomy: Exploring positive dynamics of encounter and relational care can help discover the unique significance of those who are most vulnerable in our society.

Keywords:

• Autonomy
• assisted dying
• profound disabilities
• relational identity
• disability models

Notes

1 The so-called inspiration porn has attracted many critiques. In the controversial speech “We are not here for your Inspiration,” Stella Young explained very effectively the commercial use of these motivational videos, which helps nondisabled people—she claimed—to put their worries into perspective: “using these images as feel-good tools, as inspiration, is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them. […] My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.” However, others have suggested that “inspiration porn superficially appears linked only to medical model/personal tragedy framings of disability, but on closer inspection resonates strongly with the disability movement’s advocacy of empowerment and affirmation” (Grue, 2016).

2 In one of his books, the infamously disbarred autism doctor Andrew Wakefield made a fictionalized account of a real-life story where a mother kills herself and her autistic child by jumping off a cliff, and describes it as an “act of love.”