The Republic of T.

Black. Gay. Father. Vegetarian. Buddhist. Liberal.

Whose Life? Whose Will?

I guess this is, in some ways, a continuance of the previous post. The two stories that caught my eye today aren’t necessarily directly related to the previous post, but they both involve religion functioning in ways that brought to mind something I blogged about when Terry Schiavo was in the news. They both feature people in power claiming knowledge of “God’s will,” and making decisions for other people on the basis of that knowledge.

The first one involves an Italian man stricken with muscular dystrophy as a teen and bedridden since 1997, begged the Italian government to allow doctors to remove his respirator so he could die. Not only was the request denied, on religious grounds, but soon after his death (once he found a physician willing to defy church and state) insult was heaped upon injury.

One consequence for Welby, however, was immediate: The Roman Catholic Church denied him a religious funeral ceremony on the grounds that by seeking to end his own life he was in violation of Catholic doctrine, which rejects both suicide and euthanasia. Pope Benedict XVI even alluded to Welby during his traditional Sunday blessing, reaffirming the church’s belief in the sanctity of human life all the way to its “natural” end.

Which begs the question: What’s “natural” about keeping someone hooked up to life support when, without extraordinary technical intervention, he would simply die?

The comparison with Schiavo is obvious, but Piergiorgia Welby was lucid enough to communicate his wishes himself.

The other story is more bizarre, and involves a nine-year-old American girl who — due to severe brain damage — has the mental development of a three-month-old and parents who employed medical technology to “protect her” by altering her body and body chemistry.

She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children’s hospital they devised the treatment: removal of Ashley’s uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley’s benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. “As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long,” they write.

(I won’t critique the parents’ decisions here, but in destroying her fertility might they have been flouting “God’s will”? After all even rape can be justified as “God’s will” if it results in the creation of life. Right? Given the procreative imperative of Genesis (which is also employed as an argument against same-sex marriage, how is destroying fertility part of “God’s will”? Bodyhack poses some interesting ethical questions about the parents’ decision.)

What’s only slightly more interesting than the “The Ashley Treatment” itself is that her parents justify their actions as in keeping with “God’s will.”

Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life. Knowingly allowing avoidable suffering for a helpless and disabled child can’t be a good thing in the eyes of God. Furthermore, the God we know wants us to actively share our experience and learning with the rest of the world to help all “Pillow Angels” and other special need children in reaping the benefits of the “Ashley Treatment”. [emphasis mine]

What made me do a double-take in comparing the stories was less the similarity, in the assumption by the decision-making parties in each case that they were privy to “God’s will,” than the stark differences in how that knowledge motivated them. Granted, Ashley’s parents are actively involved in caring for her and keeping her alive, while Italian church and government officials may have been less involved in his care than interested in keeping him alive. But the deity in question seemed to have conflicting desires regarding suffering, according to his/her spokespersons.

In Ashley’s case, “knowingly allowing the suffering of a helpless and disabled child” would have been contrary to “God’s will.” In Piergiorgio Welby’s case, however, knowingly allowing the suffering of a helpless and disabled adult (who also, unlike Ashley, was capable of making his wishes known in a way that Ashley isn’t), by was entirely in keeping with “God’s Will”.

In Welby’s case, I was reminded of something I wrote after Terry Schiavo’s death, about faith and the fetishization of suffering.

What’s dressed up as a desire to protect and cling to life, looks to me like a bizarre fetishizing of suffering that I cannot wrap my brain around.

I guess it has to do with my take on suffering. I can’t stand to see needless, purposeless suffering. I don’t understand it, in the same way I don’t understand why someone who has a headache doesn’t just take a pain reliever. Sure, I understand that suffering can ennoble and educate, but it just isn’t always the case. Sometimes suffering just suffering; just sitting in shit because it’s there and you’re there, not because you have to or because there’s no other option. My attitude is “Why sit in shit if you don’t have to?” (And no, just because “shit happens” is not a good enough answer, at least not for me.) Sometimes you don’t end up nobler or wiser. Sometimes you just end up in shit.

… And yet it’s that plight that people were passionate about prolonging and calling it “life,” and in their actions—particularly Congress and the White House springing into action—elevating it to a sort of “super-life” worth more resources and effort to protect than anything or anyone else. Indeed, elevating it to an almost holy state, not for Terri’s sake, but for their own. She became little more than a prisoner of the culture wars; a symbol conveniently without needs, demands, desires or even a voice, on to which they could project almost anything—a fetish object.

Sometimes the cruelest thing one can do is to force someone to live in a state of suffering. Sometimes suffering is just suffering, and the merciful, compassionate thing to do is to end it or let it end.

You could extend the discussion beyond these two cases, to issues like stem cell research and the religious objections to it, some of which include stem cell research and whether some disease is “God’s will,” as in one example Dawkin’s references in The God Delusion.

But in other parts of his paper [Richard] Swinburne himself is beyond satire. Not for the first time, he seeks to justify suffering in a world run by God:

“My suffering provides me with the opportunity to show courage and patience. It provides you with the opportunity to show sympathy and to help alleviate my suffering. And it provides society with the opportunity to choose whether or not to invest a lot of money in trying to find a cure for this or that particular kind of suffering”

“. . . Although a good God regrets our suffering, his greatest concern is surely that each of us shall show patience, sympathy and generosity and, thereby, form a holy character. Some people badly need to be ill for their own sake, and some people badly need to be ill to provide important choices for others. Only in that way can some people be encouraged to make serious choices about the sort of person they are to be. For other people, illness is not so valuable.

So, which of these groups does Piergiorgio belong to? And Ashley? How about me, or you, should illness or some other condition render us unable to express our will? Or even if we have managed to express our desires prior to being incapacitated? Who should get to interpret and enforce “God’s will” on our behalf? Perhaps even despite our own wishes if they contradict “God’s will,” or someone else’s divining of that will?

Or should that apparently unknowable and sometimes contradictory “divine will” be considered at all, in light of how often it harmonizes with the will of whoever happens to wield it?

Whose life is it? Whose will should apply?


  1. Boy, you always really make me think 😉

    And how does one even answer these questions?

    When my first son was born, we found out he had a very severe heart defect that without surgical intervention, would kill him. We had three choices placed before us: a three stage reconstructive (sort of) surgery, a transplant, or take him home and let him die.

    Some might look at the choices and think it’s an easy call, and in fact among the heart parents of other children like mine there is always dissent – between the ones who chose ‘compassionate care’ (let them die) and surgical intervention. It’s such a personal choice. And you could seriously – from a religious standpoint – see it both ways.

    It could be ‘God’s will’ that they go home and die: after all, God made their heart not form properly, right?

    But it could easily be ‘God’s will’ to do everything possible to keep them alive too, right? After all, they were born in a time when all of this medical technology exists.

    It is then up to the parents to choose the best course of action for their families.

    My point is, it’s all perspective. One person’s truth is another’s blasphemy…like you said essentially, it’s entirely relative.

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