IEET > Rights > Fellows > Disability
Extremism in the Defense of Diversity Is No Vice
Dale Carrico   Jan 14, 2007   Amor Mundi  

I appreciate the work of the radical advocates for the “disabled” at Not Dead Yet, and I have learned quite a bit about morphological and lifeway diversity from their resources. (If you want to know the reasons why I scare-quote the term “disabled,” you can read my piece, Differently Enabled.)  I am appalled when such perspectives get dismissed as always-only “disability extremism” or what have you by their opponents, even when I disagree myself with the views being trivialized in this way.

Advocating informed nonduressed consensual projects of individual self-creation as I do—whether through art, education, personal experimentation (with sex, sprituality, substances, travel, activism), therapeutic and prosthetic practices, what have you—one soon finds that one is never too far from championing the rights of marginal and vulnerable individual people at the “extremes” of legible human experience.

This is not to say that I agree more than not with the arguments one finds on Not Dead Yet.  As I already suggested, quite often I do not.

I affirm the right of the differently enabled (in all our fabulous and devastating diversity) to informed nonduressed consensual therapy and prosthetic practices—either to render ourselves more or less “conventional” in our appearances, capacities, or lifeways.  And as a part of that very same commitment I exactly equally affirm the right of the differently enabled to refrain in an informed nonduressed consensual way from being subjected to unwanted therapy and prosthetic practices, and to demand the standing and dignity of full citizenship, whether or not our choices render us more or less conventional on whatever construal.

This commitment seems to put me at odds plenty often both with some inflexible “disability rights” perspectives and some overconfident bioethical “harm-reduction” perspectives.

Unfortunately, both the inflexibility and the overconfidence of the perspectives I find myself arguing against seem to make for rhetoric that is very readily understandable and very powerfully sloganizable.  One side maintains that any intervention, chosen or not, in stigmatized difference constitutes a kind of violence against those living with difference, while the other side maintains that treatable suboptimality left untreated is itself a kind of violence.  These compelling formulations permit people to “master” too quickly what is in fact the quite fraught, uncertain, error-prone, painfully intimate, and rapidly transforming moral terrain of morphological and lifeway diversity in an era of deranging medical and technoscientific transformation.

Many seem to worry that perspectives championing morphological and lifeway diversity just amount to a kind of anything-goes vulgar relativism, and hence claims arising from such perspectives often seem to provoke an hysterical chorus of warnings about “willing” narcotized slaves, child-mutilators, clone armies, designer soopergenius babies, and so on.  These thought experiments can be as deranging as they are clarifying to technoethical deliberation, especially when they obscure the voices of the actually-existing stakeholders to technoethical dilemmas, testifying to the lived experience of their circumstances, the specific threats they confront, and the actually-available tools and options on hand they seek to make recourse to. 

I cannot stress enough how helpful it is, as a kind of rule of thumb, at least from my own perspective, to focus on consent as the foundation for a sensible negotiation of these difficulties. Consent, taken as a substantial rather than merely abstract commitment, to be legible must be both informed and nonduressed and hence must occur in the context of access to knowledge and the security of real social support (basic income, healthcare, home, education, representation).  Once one has secured the conditions for a legible scene of informed, nonduressed consent (or, more often, carefully documented the ways in which the failure to achieve such a scene has specifically contributed to the damage and difficulty at hand), one will have likewise diminished the vulnerability that attaches to so many of the stakeholders in technoethical dilemmas and hence the experience of anxiety, indignity, and suffering through which these contests get articulated so often to the cost of sense.

A technoethical perspective that defends the outcomes arising out of performances of informed, nonduressed consent accommodates a spectacular range of morphological and lifeway diversity—including an enormous range of possibilities that will seem from many perspectives suboptimal or perverse or even immoral.  But such a technoethical perspective is not a vulgar relativism.  Rather, it seeks to defend the widest possible implementation of the democratic value of diversity still compatible with a strong defense of the democratic value of universal equity. 

I insist that a society truly committed to the just and democratizing scene of consent would not tolerate the willed assumption for oneself, or decision on behalf of another to whom one is properly legally responsible, of a morphology, lifeway, or intervention that removed one or another from the possibility of an ongoing participation in the scene of consent legible as such (however unconventional the outcomes of the decisions made in that scene may be) to the peers with whom one shares and makes the world.

Again, I would stress that when it comes to actual technoethical analysis and policy recommendations, consent usually provides just a rule of thumb for me, an analytic point of departure, a benchmark against which to assess competing stakeholder claims broadly, but that it will usually underdetermine the level of concrete detail demanded of workable policy prescriptions and political compromises. 

And, by way of a conclusion, let me offer up two more such rules of thumb that I try to keep in mind to keep my feet on the ground in the face of the hopelessly complex and yet urgent demands of contemporary technoethical dilemmas in an era of sometimes radical technoscientific change. 

A second rule of thumb applies not only to technoethical dilemmas, but helps me keep my bearings when I’m trying to get a real sense of the issues and stakes in political and social struggles more generally:

Always remember how important it is to ensure that one finds out not only what the people think who have their hands on the trigger, but what the people think who have the guns pointed at them.  Always remember to ensure that one knows not only the self-congratulatory stories told by the strong, but the testaments of suffering and alternative possibility told by the vulnerable.  Always remember that there will always already be plenty of advocates for the positions of the powerful and the privileged, but an urgent need to question established authorities, make common cause with the vulnerable, and imagine the world otherwise.

This rule of thumb has lead me down many unexpected and demanding paths.  It lead me into college, it lead me into atheism, it lead me into vegetarianism, it lead me into feminism, it lead me into nonviolence, it lead me into democratic socialism, and it lead me to read and take seriously the resources available at Not Dead Yet, among other things, to try again and again to weave ever more uncomfortable rich new knowledges into my own partial and provincial worldview—even when so many of these knowledges keep highlighting for me my own embarrassing deficiencies.

A third rule of thumb I use is more quirky and personal, I suppose.  As a queer person aware of the history of the “well-meaning” catastrophic medicalization of homosexuality in the twentieth century, I try never to propose an argument about any lifeway or morphology that would deny consent to the different and vulnerable in a way comparable to what I would likely have suffered in my queerness had I been born as little as one generation earlier than I did.

Arguments that parents who value deafness enough to want a deaf child do violence to the children screened for this outcome seem to me to fall under this category, for example—since, after all, deafness hardly precludes a person from legible performances of consent.  Arguments that such children should be prevented from coming into existence or, once existing, should be therapized into more conventional personhood seem to me to depend on the application of a terribly worrisome too-stringent “optimality” reasoning rather than a more democratic reasoning based in consent.  And I have no doubt that such an optimality criterion, applied in the era of widespread irrational homophobia suffered by vulnerable queer people for decades, would have earmarked li’l ol’ “suboptimal” me for nonexistence or coercive therapy not too long ago, and to the catastrophic cost of everybody involved, however urgently I sought to communicate my preferences in the matter.

Dale Carrico Ph.D. was a fellow of the IEET from 2004 to 2008 and is a lecturer in the Department of Rhetoric at the University of California at Berkeley.

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