Wednesday, October 04, 2006
A matter of will
Eighteen months ago Janet and I wrote an essay for the Boston Globe, all about advance directives and living wills and disability and autonomy and such things. (There was a political controversy of some kind going on at the time, and I followed up on the controversy in a cheery little blog post right here.) We tried to tread carefully, because we knew we were disagreeing with some disability-rights advocates who have very strong opinions about such matters—and we knew that some people (on various points of the multiple-orthogonal-axes of contemporary politics) go so far as to argue that parents of a disabled child should not have the right to act as living-will surrogates for their child in the event that he or she becomes severely and permanently incapacitated (on the grounds that the child was incapable of executing a living will in the first place). You think the question of advance directives is complex? Just add the question of surrogacy: how can we respect the “prior wishes” of a person who, prior to a severely and permanently debilitating event or illness, never possessed the capacity to express his or her wishes with regard to things like feeding tubes and do-not-resuscitate orders?
Well, one of the things Janet and I decided last year, as a result of writing that essay, was that we had to get ourselves one of them there “living wills” for ourselves. And so, moving forward on this critically important matter with our customary speed and diligence, we remade our wills . . . yesterday.
There were a few comic moments in the attorney’s office when it sounded as if we were ordering from a sushi menu: we’ll have the maguro in the event of severe and permanent incapacitation, please, and two ebi with extra wasabi if terminally ill. Hold the intubation, and no blood products, thanks—we’re trying to cut down.
And then there’s the related question, which I mentioned in the epilogue of Life As We Know It, as to when we can begin to worry about the incidence of Alzheimer’s in people with Down syndrome, and how we can even try to begin to think about the possibility of our outliving Jamie—and the possibility of Jamie outliving us. It’s one thing to write about this in a book, now, and quite another to sit down and go about the process of setting up a “special needs” trust, decide who should administer the trust, think up a couple of backup plans, and so forth.
So it occurs to me that one of the more pleasant aspects of a giant nuclear fireball that consumes all life on earth is that it would render all these difficult decisions moot. I have therefore decided to abandon my commitments to procedural liberalism and political left-progressivism, and to begin working for the We Are All Giant Nuclear Fireball Now party. What’s in it for me, you ask? Peace of mind, mainly.
Just as long as we all perish by being vaporized in the bombs’ total destruction radius, and are not left to wheel shopping carts around the ashen, blasted post-apocalyptic landscape like something out of Cormac McCarthy’s latest. Because that would suck.