It is frustratingly difficult to explain to "health professionals" the dangers implicit in "quality of life" discussions. Too often, what makes emotional sense to an individual speaker gets translated into policy or standards. Therefore, someone who feels his life would not be worth living if he were to become quadriplegic comes to feel this is a sensible, ordinary, commonplace assumption and therefore true.
Yet the judgment that an individual's quality of life is diminished by a condition (any condition)-which seems so sensible to so many-is in reality based on emotion, not sense. And policies based on emotional arguments about quality of life are dangerous to people who are perceived by others to have a poor (or absent) quality.
Then there is the other side of the mirror, in which quite logical arguments are made about issues like "personhood" and "quality of life factors" and the utilitarian sense of greater good. In this scenario, arguments that are logical are felt to be true. If it's logical, it is true is a very poor basis for making health policy.
Yet this is the realm of argument and theory expounded by the Great Father of Animal Rights and Practical Ethics, Peter Singer. Peter Singer, who has a protected pulpit from which to teach at Princeton University, and who makes logical arguments that killing defective babies is fine because 1) no baby is a person until 28 days of life and therefore no more a person than a fetus and 2) we abort fetuses for this reason; therefore, we should be allowed to kill non-persons for the same reason.
Oh, and by the way, after 28 days some humans never achieve personhood at all, so it is perfectly justifiable to get rid of them as well. He is ultra-careful to not say he advocates killing disabled people. He only advocates that it is perfectly fine to do so, not that we must or should.
A fine point upon which to wash one's hands of other people's actions based on one's preaching.
Now, people who oppose Singer are often told they misquote him, take him out of context, and reformat his arguments. Hogwash. Read Practical Ethics, and make of it what you will. The man who so passionately defends the rights of non-human animals (who is, in actuality, a major founder of the "Animal Rights" movement) considers some humans to be "non-persons" and therefore, disposable at will. He writes about this, he teaches it, and he is paid damn fine money to go around the country advocating it.
Now he is once again on the road, about to be paid lots of money (which he is of course donating to a vegan cause-I suppose on the theory that it is more worthwhile to spare cows than defective babies). I urge anyone practicing in the wide realm of "health" (and I keep putting that in quotes to be inclusive of just about anyone concerned with health care, practice or policy) to read something about Peter Singer. Think not only about his idiosyncratic points of view, but about the dangers of wide acceptance of these theories of personhood.
I've blogged about Singer before, but got little response. So, here's some more information. Please read some of these:
Rehabilitation: Disability Ethics Versus Peter Singer, Gary W. McPherson, LLD, Dick Sobsey, EdD (published in Arch Phys Med Rehabil Vol 84, August 2003)
Unspeakable Conversations, by Harriet McBryde Johnson
A Defense of Genocide, by Cal Montgomery
An Informational Protest, from The Center on Disability Rights and Community Inclusion
Not Dead Yet Fact Sheet: Peter Singer
All of you in health care, whatever your connection, whatever side of the bed you are standing on, are affecting the lives of vulnerable people daily. It's in your practice, it's in your thoughts, and it shows up in your judgments about disability and quality of life. Before you make the automatic assumption that cognitive disability = nonpersonhood, you really must think about where that assumption leads. This is not a non-valid "slippery slope" argument. This is humanity, the very definition of human, and therefore, it is us.