IEET > Rights > Interns > Anne Corwin > Disability
Why Progressives Need To Get A Clue About Disability
Anne Corwin   Jan 17, 2007   Existence is Wonderful  

In reading various discussions in various places recently, it has become clear that there is (as I feared) a bit of, shall we say, animosity between something that calls itself “bioethics” and something that calls itself “disability rights”.  I am quite dismayed to see this, because I’ve been following a lot of the topics associated with these concepts and it did not really occur to me that there could be any contradiction or apparent rivalry between them.

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.  IEET fellow 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 people who think that gynecological care represents an “inappropriate medicalization of women’s bodies” (yes, there are actually people who think this, believe it or not).  I wouldn’t call any of that the province of “disability rights”, though—I’d just call it the province of “people who are taking stupid risks with their health and the health of their children”. 

Disability rights is not about being anti-medicine, nor is it about a bunch of so-called extremists demanding that we dig up rotting corpses, hook them up to ventilators, and give them voting rights on the basis that they have human DNA. 

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 only some of the 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 techno-progressives, transhumanists, techno-optimists, and people who defy all attempts at being labeled in any way, but who do share some broad similarities with the aforementioned.  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.  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.  Am I really the only person who sees this connection?)

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 cryonic suspension (which might actually give me a fighting chance of keeping my brain from turning into soup), 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.

Anne Corwin
Anne Corwin was an IEET intern 2006-2007, and is an engineer and technoprogressive activist in California. She is a member of the Board of Directors of the Humanity Plus, and is active in the longevity movement through the Methuselah Foundation and in the neurodiversity movement addressing issues along the autism spectrum. Ms. Corwin writes the blog Existence is Wonderful and produces a related podcast.

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