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

Friday, July 07, 2006

Balancing the Values of Consent, Diversity, and Universal Standards

So long as a trait does not render the scene of consent illegible -- the expressed need for sexual reassignment, valuing deafness, or the exhibition of mild autism, among countless other things, all seem to me clear examples of such traits -- then it seems to me that advocates of a culture of consent cannot properly deny any citizens who incarnate such a trait as a part of their own personhood either

(a) the validity of any of their performances of consent on that basis or

(b) the consensual recourse to modification medicine to come to exhibit that trait or the consensual restraint from modification so as to maintain the trait.

It is crucial to realize that legibility of consent is a weaker standard than, say, "optimality" (on whatever construal) would be -- and that it is a weaker standard for a reason: Too restrictive a standard will likely skew the difficult balance between the democratic value of informed, nonduressed consent (which, to be substantial rather than vacuous has to be propped up with universal standards on contentious questions of basic health and general welfare), and the no less democratic value of diversity.

People of good will can argue about the extent to which an "optimal" scene of consent might properly be encouraged or discouraged via strategies of subsidization and such, whether in the name of administrative economies, general welfare, or what have you. But the simple fact is that anybody who advocates both a substantive vision of the general welfare as well as for the value of diversity is eventually going to stumble onto fraught moments when they have to figure out how to reconcile these values on the ground.

I do personally think the legible, informed, nonduressed consent of citizens is the key to work through some of these difficulties, but it has to involve a substantive rather than vacuous commitment to consent. That is to say, to be legitimate, the scene of consent needs to be shored up with all sorts of assurances against misinformation, ignorance, force, and duress that don't presently prevail for the most part. Also, the standard of legible consent must be a standard weak enough to incubate a real proliferation of consensual performances rather than a standard so strong that it imposes conformity... and yet the standard must be strong enough to ensure that "consent" doesn't become an alibi for violation, exploitation, or neglect.

I speak, by the way, not as an autistic person, or as a deaf person who wants to raise a nonhearing child, or as the parent of a healthy child with three functional arms or intersex genitals unsure what their obligations are, or what have you... I speak simply as a big fag who knows all too well that had I been born just one generation earlier I might have had to defend my own sane healthy proper personhood in the face of "well-meaning" medical and social administrators who might have thought they had democracy, science, righteousness, and even my own best interests on their side even as they worked to "cure" or otherwise obliterate me.

1 comment:

AnneC said...

I responded at some length to your similar-to-this comment in my blog but here I will say: thank you for writing this.