But unfortunately, there seems to be, and I just hope that anyone who actually does care about ethics (and their consistent, unprejudiced application) would be able to resist the temptation to adopt a particular stance on a particular ethical issue just because it seems like it would best fit their party line. Or, perhaps more likely, because it's the opposite of what they think that someone they've characterized as "the enemy" would think.
I am not the only one who recognizes this. Rhetoric professor Dale Carrico wrote in his post, Differently Enabled:
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.
I do believe there is definitely such a thing as a dangerous anti-treatment bias -- for instance, parents who refuse to vaccinate their children, people who refuse blood transfusions for themselves or their children, and so on. None of that has anything substantial to do with "disability rights", though -- it has a lot more to do with ignorance and fear.
Disability rights is not about being anti-medicine. That's a facile strawman.
Nor is it about would-be "disability eugenicists" who are plotting to purposely create an army of deaf-blind babies in order to make sure there is always a "disability community" (whatever that means).
Nor is it about people demanding the right to cripple their children after they are born through the use of blunt or sharp objects.
And if you tell me that giving birth to a child who is blind is the same thing as blinding a child who can see, do you also think that giving birth to a girl is the same as castrating and sexually reassigning a five-year-old boy? Somehow I doubt that.
And -- you might think that one configuration is "obviously" better than another, but first you have to get around the means by which configurations are changed, and what the risks (and potential losses to the patient might be) if those changes are made.
When you stick too heavily to the theoretical all the time, it can be all too easy to forget that changing things about people generally involves cutting into their bodies, applying anaesthesia, breaking bones, removing tissue, and other invasive procedures.
It isn't like changing the limb length on your Second Life avatar -- though many of us, myself included, are prone to daydreams about shiny futures where everyone has access to painless and hygenic modification measures, the fact of the matter is that surgery is still only just creeping out of the Dark Ages.
I do imagine that as configurations become easier and less traumatic to change, more people will experiment with different configurations -- perhaps on a week-to-week or month-to-month basis, even, when the technology matures.
And of course that is going to affect disability politics, and bioethics, and rights debates, and all kinds of other sociological and philosophical entities.
But in the here and now, sometimes, it is useful for similarly-configured people to align and assert their right to be treated as full persons and not be discriminated against, and not have people walk around expressing sanctimonious pity at them.
Though there is certainly no lack of (very human) factionalism and forays into identity politics in some disability discourse (e.g., people who use wheelchairs part-time being denounced as "not crippled enough"), this is not the sum-total of this discourse, and anyone who repeatedly brings up these notions is simply setting up strawmen to knock down.
As far as I can tell, the goals of the vast majority of the disability rights community are almost exactly the same as the goals of the wider circle of would-be biohackers and morphological modifiers and cyborgs. Among these goals are:
1. The right to live in a configuration that suits you best, and to not be discriminated against with respect to your configuration.
2. A certain degree of bodily autonomy
3. A certain degree of cognitive liberty
4. Access to technologies and modifications that will allow you to live in the most effective manner possible according to your goals and ideals
5. Reproductive freedom
6. The right to individualized care and the freedom to make your own individual, noncoerced critical health choices
7. The right to an appropriate education
8. The right not to be killed or harassed because other people think you are an abomination and "shouldn't exist"
I could keep going, but that list sums things up pretty nicely.
And I don't see how anyone could make the argument that disability-rights concerns are "bioconservative".
Disability rights, so long as they are not based in ridiculous notions of "human exceptionalism" or so-called "Intelligent Design", are about as radically progressive as you can get.
Perhaps some actual bioconservative types have latched onto disability rights and attempted to engulf it in a simplistic and backward agenda -- all the more reason for progressive folks to offer a more forward-thinking, ethical, and reasonable alternative on behalf of the spectrum of persons with disabilities.
As I have mentioned before, there is a place for the medical model of disease. I don't know of any disabled person who would argue this. If disability-rights folks were against medical care, there probably wouldn't be very many such people left, since people with disabilities can have unique health needs.
In fact, much of disability rights seems to be concerned with making sure that disabled people are provided with proper treatment, since some even today seem to be adhering to the Stone Age solution to disability -- the solution in which the comparatively weaker people are simply left out for the wild animals or the elements to consume. I'd like to think we've moved beyond those kinds of "ethics".
Therefore, I wouldn't be too harsh on organizations like Not Dead Yet -- considering that their main focus is to make sure people aren't killed against their will. And I also appreciate their focus on drawing necessary attention to the all-too-common abuses and murders of disabled children and seeing that these horrible acts are not condoned on the basis of the child's disability.
If there weren't a double-standard when it came to euthanasia (or even outright murder) for disabled versus nondisabled people, perhaps organizations like NDY wouldn't need to exist -- but right now there is such a double standard, and talking about that double standard is not "extremism", nor should it be taboo.
(It's practically the same double standard that is applied to elderly people, and is part of the reason why longevity treatments are not as much of a priority as treatments for things that kill younger people -- elderly people, like some disabled people, are "expected" to accept their own death.)
If I were in an incapacitated state (where my state of awareness was unknown), I would sure as heck not want anyone standing around me and claiming that I ought to be unplugged because of something-or-other Peter Singer said.
Yet, by the same token, I wouldn't want anyone standing around me and claiming that rather than being put into whatever suspended-animation state were available, I needed to just be left hooked up to life-support while my brain destroyed itself beyond any reasonable possibility of later repair.
I honestly don't know the answer to "who would be on my side" in that case, and I don't know if a legal precedent for it even necessarily exists yet.
This is in part why, as much as I see goodness and potential in the world of biotech and techno-optimism, I also see a great need for people to develop a more progressive attitude toward disability and related issues.
The concerns of people with disabilities must be acknowledged and permitted into the broader context of bioethical discourse. After all, disabled people have long paved the way for medical innovation of all types, and have, throughout history, pushed the boundaries of social concept of morphological norms.
4 comments:
I appreciate the work of Not Dead Yet, and I have learned quite a bit about morphological and lifeway diversity from their resources. I am appalled when such perspectives get dismissed as always-only "disability extremism" or what have you.
Advocating informed nonduressed consensual projects of individual self-creation as I do -- whether through art, education, personal experimentation (with sex, sprituality, substances, travel, activism), prosthetic practices, what have you -- one finds 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. I don't, probably. I affirm the right of the differently enabled to informed nonduressed consensual therapy and prosthetic practices either to render themselves more or less normative, and as a part of that very commitment I exactly equally affirm the right of the differently enabled to refrain in an informed nonduressed consensual way from subjected themselves to unwanted therapy and practices, and to demand the standing and dignity of full citizenship, whether or not their choice has rendered them more or less normative.
This commitment seems to put me odds plenty often both with some of the more inflexible "disability rights" perspectives and some of the overconfident bioethical "harm-reduction" perspectives.
Unfortunately, both the inflexibility and the overconfidence of the perspectives I find myself arguing against endlessly seem to make for rhetoric that is readily understood and sloganized ("treatable suboptimality left untreated is violence" as against "any intervention in stigmatized difference is violence against those living with difference"), and allows people to "master" quickly 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 technological transformation.
I cannot stress enough how helpful it is to focus instead 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).
As against those who would worry that my perspective championing morphological and lifeway diversity just amounts to a vulgar relativism, I insist that a society committed to consent could 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 communicating to one's peers that one is making informed, nonduressed decisions.
That is a rather thin foundational value, it 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 it is not a vulgar relativism but simply a defense of the widest possible the democratic value of diversity compatible with a strong defense of the democratic value of equity.
Sorry to write so long in your comment space, so I'll conclude (I could go on much longer on this urgent topic) by offering up two informal rules of thumb I have come to value in this discursive and practical bioethical arena:
As a first rule of thumb: I think that when one is trying to get a real sense of the issues and stakes in political and social struggles it is always important 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; and to ensure as well 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.
This rule of thumb has lead me down many unexpected and demanding paths, but I regret not a single one of them and recommend them to anyone who seeks understanding of the world rather than conformity with it. That rule of thumb lead me to read and take seriously the resources at Not Dead Yet, and try to weave some uncomfortable new truths into my worldview.
A second rule of thumb: 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 denies consent to the different and vulnerable in a way that I would have suffered as a queer had I been born as little as one generation earlier than I did.
Arguments that valuing deafness enough to want a deaf child does violence to that child seem to me to fall under this category -- since deafness doesn't preclude legible performances of consent. Any argument that such a child must be prevented from coming into existence or once existing must be therapized into more conventional personhood seems to me to depend on the application of a terribly worrisome too-stringent optimality reasoning rather than a democratic consent reasoning.
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, however urgently I sought to communicate my preferences in the matter.
Dale, thank you for commenting.
I don't agree with every argument from any organization (or person, for that matter) by default -- however, I think it tremendously important to recognize when certain entities serve a necessary function (one that is perhaps neglected in the larger social sphere). I just always wonder if I am being clear enough in explaining this.
Unfortunately, both the inflexibility and the overconfidence of the perspectives I find myself arguing against endlessly seem to make for rhetoric that is readily understood and sloganized ("treatable suboptimality left untreated is violence" as against "any intervention in stigmatized difference is violence against those living with difference")
The "sloganization" thing is part of what really bothers me as well. And I agree that both the examples you give represent overly-inflexible positions.
The statement that "treated suboptimality left untreated is violence" implies that the speaker has full knowledge of what "optimal" is, and ought to have the authority to impose it on everyone else (or to socially stigmatize those who do not agree).
And there is a difference between "life-threatening sickness" and mere perceived "suboptimality".
I frequently see nonfatal variations being equated with cancer or other fatal diseases, and I think that those kinds of analogies are completely inappropriate. A live person, regardless of configuration, has choices and opportunities -- but a dead person does not.
And the statement that "any intervention in stigmatized difference is violence against those living with difference" should by no means be held as an absolutist dictate -- for instance, an FTM transsexual should not be assumed to "hate women" if s/he chooses to undergo sex-reassignment surgery (I have actually come across this kind of assumption), nor should someone who undergoes laser surgery be assumed to "hate nearsighted people".
Most of the disability discourse I've seen with respect to intervention is mainly concerned about, as you noted, making sure interventions are consensual (and that a person's bodily autonomy is respected to as great a degree as possible) -- and pointing out that people with disabilities are frequently in a position of lesser power than those around them, making it difficult to establish that the PWD is not being coerced or taken advantage of.
Given the nearsightedness example above, the disability-rights position I would take on that would one of making sure people had access to laser surgery if they wanted it, but that people who preferred to wear eyeglasses were not socially or otherwise stigmatized or discriminated against for doing so.
To me this seems simple, at least conceptually speaking -- but in reality, we all need to be aware of social stigma when it exists, since it can seriously pollute the idea of consent, among other things.
it is always important 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; and to ensure as well 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.
YES. One of the primary reason I am somewhat focused on disability and diversity issues is precisely because I don't always see the perspectives and concerns of those "who have the guns pointed at them" being taken into account.
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As a PWD, very mild Cerebral Palsy in my case, I will use very simple terms to describe what I want in "Disability Rights". First and formost, the recognition of "Individual Human Rights" are very important to me more than what can be described as "Collective Rights". Second, individual choice, unhindered by any other persons expectations of me. If I choose to live with my disability, I don't want some other person trying to pressure me into doing the exact opposite because they think it is in my, or societies best interest. Put even more simply, I am the master of my own destiny, and it is my choice alone to chart my life course, not societies choice as to what is best for me. My life! My Choice! Selfish as that choice may seem to some, it is still my choice alone to make as far as my life and medical choices are concerned, as it is someone elses sole choice related to their life and medical choices. We don't need to be dictating to each other, in a cookie cutter, singular choice standard, what is best.
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