1. The abstract ethics of the practice (in abstract, I'm for it).
2. The ways in which it's applied (in practice, the innate ableism of our society encourages certain kinds of people to kill themselves, and not others)
3. The media discourse.
This blog post is on #3.
In the UK, the mother of a 12-year-old girl was given permission to have her daughter's feeding tube withdrawn, ending her life. The girl could not communicate in words and was, due to a post-surgical infection, in constant agony. I am willing to entertain the notion that, in the abstract, this was ethical - constant agony, no hope of remediation, no ability to communicate.
Here's the (a) problem with the coverage (quoting Ari Ne'eman, founder and president of the Autistic Self-Advocacy Network, my emphasis):
What Ne’eman worries most is that Nancy died not to relieve her pain, but because she was disabled. “The media coverage implies that those who need a feeding tube would be better off dead. Nancy’s killing puts into action longstanding statements that it would be better to be dead than disabled,” he said. “People have trouble imagining that people who require assistance with eating, breathing, getting dressed have lives worth living.”
The tabloid press coverage so far, which has been very sympathetic to Ms. Fitzmaurice, does seem to be blurring the line between whether hydration was withdrawn because Nancy was in pain or because Nancy didn’t have a good quality of life. For example, The Mirror says that Nancy “could not walk, talk, eat, or drink. Her quality of life was so poor she needed 24-hour hospital care and was fed, watered, and medicated by tube.” Which may indeed sound like a wretched quality of life to those unfamiliar with disability, and the phrase “watered” is further dehumanizing.It is one thing to have a conversation about ending pain that cannot be mitigated. That's a very complicated issue.
It's another to link the ending of life to disability. How we talk about these things, especially in the media, shapes our understanding of what disability is, what a good life is, what a meaningful life is, and more.
