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

Sunday, March 12, 2006

Differently Enabled

Occasionally advocates for the “disabled” will find themselves making arguments in which they seem to suggest that there might be something somehow "genocidal" about a woman’s choice to end a pregnancy that might eventuate in a differently enabled child. Rarely, but sometimes, this is literally the -- to me, dreadfully misguided -- claim the advocate is actually making. But more usually when they are talking this way I think “disability” advocates are trying to get at a much more fraught and painful point that is simply terribly difficult to convey:

All too often cultural commonsense radically skews the proportion of women who might come to view as unwanted and so choose to end some pregnancies that they might otherwise have wanted and continued if only they had better information and more realistic expectations about differently enabled people, or could feel, as certainly they should be able to feel in democratic societies, more assured of social support and tolerance once they brought their pregnancies to term. And so, sometimes the choice of some women to end some pregnancies can clearly symptomize the irrational and illiberal attitudes of society to some of its citizens here and now.

It is undeniable that some embryos/fetuses that exhibit traits that are marked as "disabilities" will sometimes be construed as inherently "nonviable" in consequence of this fact even when the truth is that many countless individuals presently live perfectly legible and viable lives while incarnating these traits. (This is not to deny that some such traits really do register nonviability.) The exhibition of “disability” in any measure or morphology in the womb too typically comes to be freighted with not necessarily realistic prophetic conjurations of difficulty, disappointment, and tragedy. But the fact is that there is no such thing as a perfect child just as every child is extraordinary, that raising children is always difficult and heartbreaking just as it is rewarding, that every human life will be marked by tragedy and suffering just as it will be with triumphs and pleasures. Too often, no doubt, prejudices about the differently enabled skew our sense of what reasonable expectations about parenthood, childhood, humanity, and life really should be.

For "disability critics" these skewed expectations subsequently play into the ongoing stigmatization of differently enabled citizens alive here and now, and facilitate their exploitation and the irrational discrimination they face. The social and cultural contexts in which pregnancies come to be constructed as wanted or unwanted are one and the same as the social and cultural contexts in which the differently enabled must then struggle to cope, to testify to their joys and their sorrows in the world they share with us as peers, and to demand their rightful standing as peers.

Needless to say, trying to convey these already difficult truths in the midst of debates about abortion rights of all things isn’t exactly the easiest or the most clarifying thing in the world. And I do feel that introducing this level of nuance and critique into a discussion of abortion at an historical moment when abortion rights are under assault by a menacing activist conservative movement demands that I make a few things clear right here and right now: I believe that every woman always makes the right choice and the choice she has a right to make whenever she makes the best decision she can on her own terms and on the basis of whatever information she has at her disposal over the biological processes that take place in her own body. My own feminist version of technoprogressive politics always and in every case without exception champions any woman's right either to facilitate wanted pregnancies through ARTs or to end unwanted pregnancies through safe and legal and universally available abortion. And for me both of these commitments are aspects of precisely the same technoprogressive advocacy of morphological freedom.

Also, I think I should take a moment to say that when I put quotation marks around the term “disability” this is not to deny nor to trivialize the real facts of suffering that inhere in the reality of morphological variety and differently enabled embodiments in social worlds as they actually exist. And part of the way I would want to get it why I do scare-quote that word “disability” is to say a bit about why I also use a term that almost nobody else does when talking through these issues: differently enabled.

In a nutshell, “disability critics” rightly point out that a term like “disability” introduces immediate and sometimes insuperable barriers in the way of talking about questions of morphological variety that almost always pathologize and disqualify some variations, and so some citizens, over others. A common intervention, then, is to substitute for the inherently normative term “disability” here, a more “neutral” designation like “differently abled.”

But I worry that the neutrality evoked in this substitution likewise tends to facilitate a nostalgic politics of the “natural” that is far more trouble than it is worth, and conspicuously so in discussions of what are proper and democratizing medical interventions into customary biological norms. For me, then, a more powerful term to facilitate specifically technoprogressive rhetoric on these questions is "differently enabled." The term comes from neuroethicist Zack Lynch. His term is like "differently abled" in that it tries to drain some of the inherent stigma of a term like "disabled." But Lynch's substitution of the term "differently enabled" over "differently abled" also manages, I think, to usefully denaturalize these discussions.

It helps us foreground the extent to which science has contributed to the increased standing of people living with Down's Syndrome and other conditions in the present, while it helps us call attention to the incredibly intimate prostheticization of so many valuable embodied lives in this historical moment (people locomoting by means of motorized conveyances, communicating via digital networked interfaces, etc.), all the while providing an avenue through which to think of the genetic, prosthetic, and cognitive proliferation of human embodiment that is well on its way.

Make no mistake, the way we deal with the social problems of respecting our differently enabled peers today will deeply influence the ways in which we come to cope with the technoconstituted variety of humanity in an era of morphological freedom.

When the differently enabled demand "nothing about us without us" this is the quintessentially democratic demand and technoprogressives would be benighted misguided fools not to heed them in this demand, because soon enough we are all going to be them (not to mention the fact that some of us already most certainly are). Everyone is going to be disabled soon enough vis-a-vis the specific empowerments available via different paths of modification undertaken by some others, just as they too will be rendered relatively disempowered via-a-vis some of our own modifications.

I think technoprogressive champions of medical research and of the rights of democratic citizens to make informed consensual recourse to emerging modification and longevity medicine need to take special care to understand and then to frame the case they are making in terms of “modification” rather than “enhancement.” We should talk about modification in terms of difference, variation, and proliferation rather than drifting into curiously chauvinistic talk of “objective improvements,” “better humans,” or of becoming somehow “more than human.” We should stress universal access and informed consent rather than the imposition of universal norms and a conformity we designate too-blandly and too-uncritically as simply, “health.”

There is no question that part of the special difficulty of this developmentally transitional moment for technoprogressives is that the differential distribution of basic healthcare around the world both expresses and facilitates the most brutal forms of injustice. And there is no question that we must invoke universal standards to combat this injustice, to provide basic healthcare for all, to regulate development to render it safe, transparent, and accountable, to distribute the costs, risks, and benefits of medical and other technoscientific developments as fairly as possible to all the stakeholders to these developments.

And yet we must recognize, likewise, that the inevitable and necessary reliance on these universal standards becomes dangerously susceptible all too quickly to a kind of normative technocratic hygenicism that looks for all the world like the worst kind of eugenicist nightmare.

To the extent that basic needs are met, to the extent that human beings around the globe are emancipated through technodevelopmental social struggle from deprivation and then take up their rightful places as informed, consensual citizens and peers in a democratized secular technoscientific world then, and always only precisely to that extent, technoprogressives must shift from the universalizing language of the ethical face of social justice to the individualizing language of justice’s moral face.

As a first approximation of my own resolution of this quandary, let me propose that we will finally say that basic human needs are met and maintained whenever the scene of consent is truly an informed one and when consent is offered up in that scene without any threat of violence, deprivation, or humiliation to duress it. These conditions seem to me to demand the global institution of a basic income guarantee, universal basic healthcare, lifelong recourse to education, retraining, and therapy, sustainable and deliberative development, world federalist alternatives to the military adjudication of disputes, and a radical democratization via peer-to-peer networks of governance, security, and social administration. But once the struggle for social justice secures this scene of consent, what justice demands then is the widest possible affirmation of the creative proliferation of consensual practices of self-creation that will arise out of that scene.

Morphological freedom is proliferative, not convergent. It is the farthest imaginable thing from a trajectory into some bland “superhuman” conformity.

Technology will save the wretched of the earth. But then technology will make queers of us all.

(By “technology,” here I mean to say technodevelopmental social struggle –- but it really doesn’t make for a nice slogan, does it?)

As a queer, I know all too well that had I been unlucky enough to be born just a couple of generations ago my perfectly healthy and rather conventional desires would surely have been pathologized as part of the commonsense of my society (including the "common sense" of most of the well-meaning and knowledgeable people to whom I might have turned myself or been referred to had my desires and practices become known). And so, I am very skeptical of some of the rhetoric I encounter though which people strive to articulate the ways in which variously differently enabled people suffer for their differences in our society. I can never forget just how easy it is to mistake the suffering caused by stigmatization and discrimination with suffering "inherent" in a bodily condition itself.

Even as we struggle to facilitate morphological freedom for everybody, including our variously differently enabled peers today, we have to be very careful not to pretend we know in advance what forms of modification will be the “right” ones for all, nor to imply that consensual paths of modification different from our own will be, because of their differences, stigmatized as unliveable, unintelligible, pathological, or abject.

What on earth is the point of all this technological abundance and empowerment and modification technophiliacs keep crowing about if they just end up wanting to police everybody into crabbed conformity like Puritanical conservatives grubbing around in some muddy starving plague-ridden New England hamlet? It makes no sense to me at all! With each passing day we manage to facilitate technoprogressive outcomes it seems to me we should celebrate diversity more and more and share our abundance more and more.

Also, and by way of a conclusion here, I have begun to hear debates on these sorts of questions getting framed as though they represented conflicts between “transhumanists” on the one hand, and “disability activists” on the other. As is well known, I don't personally care about whether or not some minority viewpoint called "transhumanism" prevails in "sweeping the world," whatever that's supposed to mean, but I do care quite a lot whether or not emerging genetic, prosthetic, and cognitive therapies are developed and rendered safe as quickly as possible and that their costs, risks, and benefits are all distributed as fairly and as widely as possible to empower and emancipate humanity and deepen democracy. And this requires, it seems to me, that technoprogressive folks (in all their own marvelous irreconcilable variety) participate in struggles like those around autism rights, as well as other "disability" rights movements, in terms that emphasize the extent to which there are no "natural" capacities to champion here, that technologies are never inherently just or unjust but demand democracy to faciliate progressive outcomes. Taking up the mantle of some tribal identification and then assigning the status of enemy tribe to another in a moment like this looks to me like a human, all-too-human, distraction from the important work that needs doing here and now.

3 comments:

Robin Zebrowski said...

This was wonderful, Dale.

My talk at Stanford actually touches on a whole bunch of these points, and I've found myself thrown into the world of "disability studies" rather unexpectedly for my dissertation. I find one of the most difficult things to do is simply to find words to talk about it without using "disability". Differently enabled is great, although to me it still points to some societal and medical "norm" - (different than what?).

Thanks for the great read this morning :)

Dale Carrico said...

I was thinking differences as variations rather than differences as deviations. But you're right, normativity wants to wend its way in whatever you do...

AnneC said...

I know this is an older post, but it is tremendously relevant. Thanks again for writing it.