Eluana Englaro
Eluana Englaro died yesterday. She had been in a persistent vegetative state for 17 years following a car accident. Her father petitioned and won the right to discontinue intravenous feeding and hydration. She died a few days later.
The BBC is doing a talk program about it right now. I should be listening, writing in, etc. However I am overwhelmed and immobilized with emotion even listening to the horrible distortions provided in the discussion.
As a board member of Not Dead Yet since 2000, and a member since 1996, I am a long-time activist against physician assisted suicide for many reasons, first and foremost because it is implemented in a discriminatory fashion, only made available to (in fact thrust upon) people with disabilities. The most basic objection goes; if assisted suicide is good for people with disabilities and “terminally ill” people, it should be good enough for everyone else. The non-discriminatory course would be to eliminate all “suicide prevention” programs. If, on the other hand, we have a public policy to discourage suicide, that should apply equally to everyone.
So here’s Eluana, who’s in a PVS. This is often erroneously referred to as a coma by the media. In fact, there is no clear information about her degree of consciousness, nor how much rehabilitation she has been given. It turns out PVS (also known as Minimally Conscious State, or MCS) is a catch-all diagnosis which captures a wide variety of functional limitations, including conscious people with severe cognitive limitations. Some of these people can swallow, some cannot and eat through a feeding tube in their stomach, or through an IV, some could swallow with rehabilitation training. Some communicate with non-verbal means, some do not. Those people whose families want them dead are apparently “burdens” on those families (though in general their care is paid for by the state). The families say they would have wanted to die if they had been able to make such a declaration. But usually there is no written statement to that effect, and the only witnesses to any alleged oral declarations, are the family members who themselves are now trying to have them killed.
This situation is complicated because it is happening in Italy, where the ultra-conservative pope and president have chimed in against withdrawing food and hydration. Thus, the views of people with disabilities — the people directly affected by the issue, and who have the most sophisticated analysis of the moral and ethical questions involved — either go unheard, or are lumped in with the conservatives. We are patted on the head and told (in a condescending tone) “there, there, you don’t need to worry about this, no one would try to do this to you.” The subtext being that because the intelligent disabled people needn’t worry. Bullshit. The blond Jews ended up just as dead as the dark-haired Jews. Besides, if we don’t say something stinks in here, who will?
So I’m frightened and pissed off (again) because every couple of days it’s a matter of life or death for us; whether it’s abuse of people with disabilities reported by the International Coalition on Abuse and Disability, or news of another eugenicist spewing his garbage, as reported by Not Dead Yet. I wish I could be more articulate and less panicked when I hear these discussions, but at the moment, I can’t. Maybe it’s the lack of people with disabilities in my everyday life to draw support and validation from, maybe it’s the weak, intimidated and disorganized disability community here in Quebec, maybe it’s the effect of everyday and ongoing discrimination. I dunno. But there it is.
