Using Technology to Deepen Democracy, Using Democracy to Ensure Technology Benefits Us All

Sunday, March 27, 2005

Raising The Tone

The Schiavo Circus relentlessly grinds on. My rage and disgust and despair are so overwhelming that it is actually prompting lots of productive dissertating just as an escape from the horror and madness into my own little discursive sandbox. Given how palpably close my deadlines are at this point, that is not such a bad thing, I guess. Anyway, in a somewhat unexpected turn, a couple of folks I respect quite a lot posted positions over on the Cyborg Democracy blog that sympathize with a rather generous interpretation of the religious conservatives in the present "Passion of the Terri" as a defense of disability and respect for the wishes of the family.

James Hughes posted a reply to their concerns with which I agree very strongly, and his reply in turn provoked some thoughts of my own. There are, as it happens, real conversations that it would be valuable to hold in the aftermath of the distress and heartbreak of experiences like the one Schiavo's family has undergone. But conversation is hardly the word to describe the monstrous ugly and damaging thing scabbing over this trauma in America today.

In any case, here's what James said:

Her CT scans are up on the web. Her brain is completely necrotized and liquefied. She feels nothing, thinks nothing and is not awake in any meaningful sense.

She died 15 years ago. It’s a travesty to keep the body hydrated.

Nor is this a bad precedent for life extension. In fact, it is the reverse. The legal principle... here is that a person's wishes about their end-of-life treatment be respected. The courts have heard testimony for ten years from the parents accusing the husband of malfeasance, and from the husband explaining that his wife would not want to have lived this way. The courts are only respecting her wishes as communicated through the husband. They have never found the parents' increasingly biazarre arguments credible.

I've written elsewhere that once there is a technology that can reconstitute a damaged brain that we will be obliged to keep a person on life support until we can use it. Michael Schiavo took his wife to California to use the most advanced brain stimulation technology available in the world in 1990, after her collapse. To no avail. He has carried out what we would have expected of him.

Now the fight is between those who think the dignity of life requires consciousness, and those in the Christian Right who think fetuses and the brain dead oblige our respect...

The responsibility for the feat of making politics out of a withdrawal of treatment decision that is made dozens of times around the industrialized world every day can be laid squarely on the Christian Right. A network of Christian Right foundations have bankrolled the Schindlers' lawyers and advisors, and Christian Right Republican strategists seized on the issue as a way to underline for the public that the Democrats were the party of "death" and moral relativism. The Democrats, not being prepared to make bioethical arguments, have generally ducked. They also were confused because the generally left-wing disability rights lobby has been dominated by a group insisting that Schiavo is just "disabled." The disability extremists don't believe the disabled should ever be allowed to remove themselves from life support because such decisions are always under pressure from an ableist society.

On the other "side" are those who see this case as a defense on our right to control our own lives and dying, and of an argument about what is valuable about life, simply "living" or being conscious. Most bioethicists, lawyers, philosophers, nurses and doctors on this side are liberals, but fortunately polls show that 66%-85% of Americans agree that Michael Schiavo should be able to act in his wife's interest, and that we would not want to be kept as potted plants ourselves.

Finally, there is the outrageous statement this makes about resources. The "culture of life" side only cares about a right to health care or disability rights when we are fetal or permanently unconscious. Otherwise, we are on our own. So yes, this is political, but its not because of the Left. Its because of the outrageousness of the Right.


I agree with almost everything James says here. Two points he makes that I want to dwell on at greater length, though, are his claims that (a) liberals have hesitated to make bioethical arguments because they worry that these will play to the charge that the left is somehow "moral relativist" and (b) that "extreme disability activists" are arguing that Schiavo is disabled rather than dead.

First off, very quickly, the idea that liberals are accused of "moral relativism" because of their commitment to deliberative and democratic processes, the weighing of testimony and evidence, a respect for the ability of experts to respond effectively to critical interrogation and demonstrate evidenciary grounds for their claims, seems to suggest that only religious fundamentalists blindly following orders and demanding comparable obediance from everyone else qualifies as "moral righteousness." The result of such an attitude is precisely what we find here: zealots with guns attacking clinics and hospices and trigger-happy politicians itching to release the armies of the night.

Second, and this is infinitely more ticklish, I think it is a profound mistake to condemn disability activism in any kind of blanket way, especially to the extent that the urgency of their positions in the current political environment derives from the astonishing extent to which they are embattled at the moment.

It is obscene of course for the religious right to claim their media manipulations of the dead body of Terri Schiavo constitute a "championing" of the "disabled" when they attack the actual legitimate legislative accomplishments and efforts of the disability movement at every turn.

And it is likewise obscene to claim that these attacks on the wishes of Schiavo herself in these matters as the courts have best but imperfectly ascertained would be defended as an expression of a "commitment to life."

But the repudiation of critical intelligence and choice in the name of an affirmation of dumbed-down sensation and endless accummulation is of course the hallmark of the death-cult "Culture of Life" of our gun-loving pollution-loving war-loving wire-hanger-loving ignorance-loving STD-loving secrecy-loving patriarch-loving Repugnican conservatives in America today.

I happen to agree with the disability activists that there is something quite pernicious in the liberal discourse that likes to say that if Schiavo had a "chance at recovery" it would be they, not Republicans, who would champion her.

These activists are rightly suspicious that the idea of "recovery" here mobilizes a highly restrictive normative concept of a "life worth living" that denigrates many disabled people who, whatever their struggles, have lives with dignity, joy, and value worth affirming and supporting.

In other words, even if I agree that James is absolutely right to locate Schiavo's body with the dead rather than the disabled, it is also clear that the rhetorical figure of disability is circulating here in ways that would have to matter to disability activists.

There are disabled people who are superficially similar to Schiavo to the untrained eye, after all, and it is interesting to note the extent to which so many of them depend on ongoing cyborgization to find their ways to more enriching lives on their own terms, communicating through computer interfaces, locomoting in motorized conveyances, and engaged in sometimes lifelong medical procedures of extraordinary length, depth, and profundity.

The differently-abled should surely be ferocious allies of CybDemites and other technoprogressives.

That so many are not (yet) suggests to me that we haven't yet gotten our language right and our positions clear.

Morphological freedom
is not a commitment to a coercive imposition of a normative body in the name of "health" but precisely an embrace of genetic, prosthetic, and cognitive modification practices in the name of a proliferation of ways of being in the world.

Part of what it means to respect the differently abled as the people they are is to respect them and support them in their difference whenever they affirm its value on their own terms. Part of what it means is also to provide prosthetic avenues for rewriting their bodies and lives in the image of their own desires on their own terms.

It is endlessly tricky juggling our value for morphological freedom, and assessments about the proper distribution of limited health-care assets in the service of the general good, and best ways to responsibly affirm consent (a category which implies both accurate information and competence -- qualifications that are necessary even while they invite abuses of the spirit of the principle itself).

Of course, by way of conclusion here, disability activists on the left are in any case quite right to point out that Republicans are after all the ones struggling to defund the Medicaid on which Schiavo's body depends, are eliminating lawsuits of the kind Schiavo won, and show every sign of denigrating the actual culture of hospice workers who are caring for Schiavo and so many numbers in the midst of distress, diminishing funds, and so much widespread ignorance spreading ever wider.

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