Friday, February 23, 2007

On Destigmatizing Difference

Last Saturday I got myself a pair of those sneakers with small, removable wheels in the heels that seem to be popular with the pre-teen set. Frivolous? Perhaps, but they were on sale, and I'd been eyeing them longingly for over a year, thinking about how much fun it would be to zip around and spin and glide across smooth surfaces the way I saw countless 12-year-olds doing whenever I went out anywhere. And I've been tremendously enjoying this alternative means of traversing horizontal surfaces, to the point where "normal" walking is beginning to seem a bit, well, pedestrian.

I've always been intrigued by nonstandard methods of locomotion (possibly starting in infancy, when I supposedly preferred to crawl backwards). By around the age of three, I'd also developed a fascination with mobility devices, including crutches, wheelchairs, and walkers -- all these things feature prominently in my early drawings, and I remember very contentedly sitting and drawing them, trying to get the lines and angles just right. My fascination with these devices completely independent of the social and cultural baggage I later realized was attached to them -- I saw them as interesting objects and as tools.

It wasn't until mid-adolescence when it started to dawn on me that devices like crutches and wheelchairs carried strong associations with pain and pity for many people. Finally, I knew why people had expressed so much discomfort with my interest in (and use of) such things...they didn't see them as tools or even toys, as I did, but as symbols. Symbols of states in which they preferred not to imagine themselves, and symbols representing the shapes of things most people would seek to discard, rather than embrace.

But is this truly an accurate or constructive way of looking at things? As far as this author is concerned, no, it isn't. There is nothing remotely progressive about holding on to old symbols and archetypes when rather than deepening and enriching and explaining various aspects of sentient existence, these sociolinguistic objects start to supersede and obscure the power of the actual, physical objects they initially applied to (while simultaneously, and often unwittingly, devaluing the people who would make good, practical use of these objects).

While there is doubtless power in language and the reality-structures created by language, there is a different but no less real power in the physicality of things that exist even when our eyes are closed, our ears are blocked, and our attention is diverted. Without cultural baggage applied, a crutch is simply a versatile piece of wood or metal, and a speech synthesizer is simply another voice with a person behind it.

I fully support the right of all persons to seek and access the means to alter their intrinsic physical/cognitive configuration, regardless of whether that alteration brings that person closer to or further from contemporary norms. But I also support the right of all persons to not alter themselves or be altered except under the circumstances of informed, nonduressed consent. These are the tenets of morphological liberty, which represents a point of stark and obvious convergence between disability theory and the emerging technosocial discourse surrounding the emerging and potential applications of transformative technologies.

One of the important implications of holding morphological liberty as a primary ideal is that if a majority of people truly recognized this ideal, we'd probably have a lot easier of a time getting various kinds of adaptive technology to people who might benefit from it -- and in the process, we'd be broadening the scope of what is considered acceptable in terms of societal and personal functioning.

This is why I defend my philosophical positions on such matters with primary regard to morphological liberty and the value of diversity. Romanticizing disability might initially sound progressive and inclusive, but taken too far, it can lead to a kind of depersonalization every bit as insidious as the sort that stems from taking a "leave-the-weak-ones-for-the-wolves" utilitarian position. It is no more right to turn someone into a political or even religious symbol (as in the case of Audrey Santo, who had akinetic mutism, and is described as "an instrument" and "one with Christ") than it is to smother them with unrelenting patronization and pity, and indeed there's something inherently patronizing about making someone into a symbol.

People who need feeding tubes, ventilators, wheelchairs, crutches, or speech synthesizers should certainly be looked upon with no greater horror or disgust than people who use calculators or roller skates.

But at the same time, such individuals should not be reduced to embodiments of even supposedly "positive" disability stereotypes, such as the hero archetype.

People are people, not archetypes, and when people require or prefer to use particular technologies in going about their daily lives in a maximally enabled and participatory fashion, it is the responsibility of an inclusive society to consciously blur the lines between intrinsic and extrinsic means of technological enablement.

Certainly, if someone wants surgery to address their paralysis they should be able to get it, but if this sort of surgery is offered only in the context of a culture that pities or talks patronizingly toward people who use wheelchairs, then there can really be no such thing as informed, nonduressed consent.

Upon encountering a person, it should not matter to any of us just how this person chooses to seek enablement with regard to their social participation. Modern humans are already beginning to blend with our machines, to the extent where the loss of a PDA can be tantamount, functionality-wise, to a traumatic brain injury. And as such, it only makes sense that a rational culture would be lenient and liberal with regard to the various means by which people can creatively address their challenges.

The destigmatization of adaptive technology is part and parcel of the process of technodevelopmental change along a positive trajectory likely to lead to a far more inclusive, and therefore better, world for everyone. Though (as noted above), romanticization of any challenging aspect of the sentient condition is generally ill-advised due to its depersonalizing potential, it is also an unwarranted invocation of a slippery-slope to suggest that by accepting different, more diverse, and even radical lifeways and morphological states, we're somehow going to end up harming people.

Quite the opposite is probably true, and I see widening the sphere of acceptance and validation of multiple diverse forms and ability sets as being absolutely essential to the survival of sentient life into the future. Neither liberty nor democracy is deepened through simplistic practices that are enacted in the spirit of "culling the herd" of deviation and difference just so that the normals don't have to deal with the weirdos, the cyborgs, the differently-enabled, the morphologically interesting.

It should not be considered overly idealistic to expect that a society can provide both acceptance and liberty to change, and liberty to not change, and liberty to change in particular (and not necessarily normative) ways. In fact, a commitment to morphological liberty and valuation of diversity (not merely for its own sake, since there you run the risk of turning people into symbols) means that we must demand a social, political, and technological landscape that meets the aforementioned criteria. None of us should ever be too timid to demand too much of the future.

Tuesday, February 13, 2007

Notes From The Fringes of Longevity Advocacy

Matt, my Significant Other, is a fellow engineer and quirky-geeky sort, and he's been very supportive of my continuing involvement in activities relating to life extension, transhumanism, etc. However, he isn't really the "activist" type, and doesn't tend to get irate like I do about things like death and discrimination, or gleeful to the point of running around in circles about how awesome being alive is. Nevertheless, I've found that his mellow is an ideal counterpart to my unbridled exuberance -- and he cares deeply about ethics and has always been interested in following certain kinds of technological progress. What tends to (pleasantly) surprise me occasionally, though, is that he will sometimes suddenly come out with some long and well-thought-out observation about topics I had no idea he was even listening to me talk about.

The other night's discussion emerged, oddly enough, from something that initially began with some musings about genetically modified crops and the patenting of DNA. I'm not sure how we got to life extension from that, but I'm not particularly surprised, seeing as any conversation I'm in long enough will generally turn to that particular topic. Anyway, Matt made a few comments that I figured I'd share -- sort of as an interesting cross-section of ideas from someone who, while not directly involved in longevity advocacy, certainly picks up on some of its fringes through associating with me and my assorted cohorts.

One thing that tends to happen to me, as a result of spending so much of my online time communicating with people who already agree that healthy life extension medicine is a direction well worth pursuing, is that sometimes I forget just how weird some of my favorite ideas might sound to John Q. Public. It is hard for me to fathom how anyone could really and truly make excuses, and mean them, for the fact that so many people are killed every day by their own failing bodies, but apparently people do.

Matt thinks that, judging from what he's heard from me and others in the healthy life-extension community, we might be fighting a losing battle if our goal is to actually attempt to shift aging itself more solidly into people's minds as a thing that needs to be treated. Personally, my own approach is much more positive than negative (e.g., based on the premise that life is good, and therefore people should be able to enjoy as much of it as they'd like), but I see his point. Public opinion is a fickle and flighty thing, and not necessarily based on either scientific data or seemingly obvious observations about reality.

Basically, Matt is suggesting that if the end-goal is to actually hasten the development of effective longevity medicine, it might be counterproductive to attempt a memetic shift of the magnitude that some would favor -- yes, it might work, but it might also backfire and result in a reactionary (and potentially successful) opposition to the notion of longevity medicine. And while I do think that it's fairly obvious that if you offer people the means to stay healthier, stronger, and more resilient, they aren't likely to get the diseases that tend to kill elderly people to begin with (heart disease, cancer, Alzheimer's, etc.), I also think that Matt makes a good point in suggesting that we ought to start with reference points people can relate to. I honestly have no idea how many people in the public, right now, can really relate to the idea of truly radical life extension, and what the effects might be of approaching the subject in particular ways.

Matt thinks that maybe we ought to start simple -- e.g., unless specifically grilled on the end-goals of longevity research, we should simply attempt to frame it as a natural extension of medical care. The purpose of medicine, after all, is to save lives, so longevity medicine really ought to be a no-brainer. The only reason it isn't for a lot of people might be due to the way it can sometimes end up being framed, so framing it properly is undeniably important.

This is a subtle point, but possibly one worth mulling over. I have become reasonably convinced that focusing too heavily on specific diseases in terms of research could be harmful -- that is, it might encourage progress in a direction that results in treatments that really only apply to people who are already experiencing dangerous or even deadly symptoms -- but I am not convinced that talking about the diseases that anti-aging medicine could help people avoid would be a bad thing. After all, there are already plenty of charities and research programs devoted toward finding specific cures for things like cancer and cardiovascular disease -- it's obvious that when it comes to specific causes of death, people are pretty reluctant to embrace them.

If "aging" can be considered to be something that also kills people, then talking about addressing it is fine and something to be encouraged, but that doesn't mean that we can't talk about the benefits that solving the aging problem will have for people who might otherwise have developed, and died of, other specific diseases. In short, we can't go wrong by emphasizing and acknowledging all the benefits of effective longevity medicine!

Matt suggests that rather than starting in the future and trying to capture people's imaginations regarding what could be, perhaps it is better to start now and try to reach people on the basis of things that they can personally identify with, and go from there. He thinks that, for instance, as soon as the concept of "living forever" is brought up, about 70% of the population will likely start tuning out -- and similarly, he thinks that healthy life extension and cryonics are completely separate entities and that associating healthy life extension with cryonics could be somewhat counterproductive due to the "yuck factor" associated with vitrification and the controlled sawing off of one's cranial unit. (Personally I find a much more impressive "yuck factor" in the idea of being burned to a crisp, or the idea of buried in the ground only to bloat, decompose, and become a snack for the worms, but I can only speak for myself in that regard!)

I'm not necessarily saying that I agree with every one of Matt's comments; I do actually think that memetic engineering can go a long way, particularly when the Internet is utilized as a medium. It is possible that with the more extensive (and highly interconnected) media tools available today, it will be possible to shift public opinion in time to start saving lives sooner. And I think that the healthy life extension community is definitely right to keep emphasizing the fact that individuals deserve (and have the right to fight for) the longest, healthiest lives possible, which will certainly necessitate the development of effective longevity medicine (as opposed to treatments for specific age-related diseases). Nevertheless, I did appreciate getting Matt's perspective as someone who might now be considered an intrigued bystander.

Feel free to prove me wrong here, but I don't think any of us can afford to get too stuck in some sort of insular techno-optimist bubble, lest we suffer the fate of many of the first-wave transhumanists that preceded us. As I see my family members growing older, and as I hear of retired co-workers still dropping dead in their 60s and 70s (despite the fact that it's already 2007), I am justifiably concerned about trying to help shape the best path forward toward a world in which people plan for their second, third, and fourth careers, rather than for their funerals!

Wednesday, February 07, 2007

Power Differentials and Theory of Mind

Anders Sandberg's take on How Power Corrupts brings to light a particular cognitive bias associated with power imbalances that I think has much relevance to issues of morphological/cognitive liberty, diversity, and self-transformation in a technologically enabling society.

In follow-up experiments it was found that high-power subjects also tended to assume other people had the same information that they had (the "telepathic boss" problem - the boss assumes that everybody knows what he knows and want). They were also less accurate than low-power subjects at judging emotional expressions. There were also anticorrelations between reports of general feelings of being in power in one's life and tendency to take other's perspective. Overall high-power people seem to anchor too heavily on their own vantage point and this impairs their ability to consider what others see, think and feel.


This certainly correlates with some of my own observations -- for instance, some of my elementary school age-peers seemed to be convinced that it was okay to taunt and even physically attack me. I never really understood why at the time, but looking back, it's pretty clear that they were in a position of power simply by virtue of there being more of them. Plus, they were more neurologically and socially similar to one another than to me, so it was more difficult for them to see me as a person with feelings and independent thoughts. The social institutions of clique, fad, and fashion were so obvious and tangible to many (though certainly not all) of my classmates that my utter disregard for these things (due to sheer lack of interest on my part) was seen as an anomaly and, probably, a kind of threat that needed to be checked.

Learning to uphold morphological liberty in practice must necessarily include the development of a habit of catching and checking one's visceral reactions to the existence of certain kinds of people. Though bullying is generally associated with playgrounds, cafeterias, and people under the age of 18, it is a phenomenon that most certainly does not disappear when one enters the adult world. In addition, there is such a thing as cross-generational bullying (e.g., child abuse and elder abuse). And it is readily apparent that whatever form it takes, bullying can frequently be tied to configuration-discrimination and the perception that some people are just too inconvenient for a particular environment or paradigm.

In addition, improper treatment of individuals (including the denial of certain kinds of freedom to particular individuals) can also, to some extent, be a consequence of misconception. For example, at the end of his essay on "How Power Corrupts", Anders Sandberg writes:

Maybe we should just promote people with Asperger syndrome to management in favour of people with intact theory of mind. That way we will not reduce the total human ability to see things from other perspectives.


I know that the "autistics lack theory of mind" meme has seen some popularity in the media, and superficially might seem to explain a lot, but I am not convinced that it does. Typical tests used to assess Theory of Mind in children suffer from a number of weaknesses, to the point where their veracity might be seen as superficial at best. As pointed out by the author of Whose Planet Is It Anyway?:

...autistics are more likely to be visual-spatial thinkers, whereas the majority of the population consists of auditory-sequential thinkers. A visual-spatial thinker, upon hearing the question "Where will Sally look for her marble?" will translate that question into mental images of Sally, the marble, and the location of the marble. An auditory-sequential thinker, on the other hand, will focus on the action of looking as a sequential process: Sally first has to look for the marble before she can find it. There is an implied "first" in the question—where is the first place that Sally will look for the marble—but a child who processes language visually may not understand that the question has a sequential component. Instead, such a child may interpret the question as "Where will Sally have to look to find her marble?"


The observation quoted above basically posits an alternative explanation as to why autistic children might perform less accurately on common Theory of Mind tests -- perhaps a less obvious-seeming explanation, but then, when you've never seen the curve of the globe for yourself or monitored the movements of the moon, sun, stars, and tides to the degree necessary to invoke unmistakable suggestions of roundness, it can seem fairly "obvious" that the world is flat.

If a visual-spatial (rather than auditory-sequential) thinking style better explains performance on a test than does the notion that the subject lacks the understanding that other people have independent minds, then science is obligated to follow up on this and remain very careful about the conclusions it draws about autistic minds and personhood.

It would be one thing if autistic people did, in fact, lack Theory of Mind to a greater degree than nonautistic people. If that were the genuine scientific reality, and the data supporting it were really al that conclusive, I'd accept it without protest. But from having observed people from a sort of anthropological viewpoint for years, it is readily apparent to me that the determining factor in being able to accurately interpret another person's feelings and motivations is not autism or lack thereof, but degree of broad-spectrum similarity between individuals and groups.

If nonautistic people can't understand autistic people, but autistic people can understand other autistic people, this is data that cannot be ignored. And as suggested in Anders Sandberg's "How Power Corrupts", when a person holds a particular level of power, the degree to which they default to considering the perspectives of others can suffer.

The good news in all this is that Theory of Mind seems to be, rather than a purely innate, "You have it or you don't" sense, a specific skill that can be developed further through practice and motivation and experience, regardless (to a degree) of how a person is neurologically wired to begin with. I would wager that people who have had more contact with individuals from cultures other than the one they were born into probably have a better, and more sophisticated, Theory of Mind than people who stay in the same insular community throughout their entire lives. Therefore, one way to improve your Theory of Mind could be to intentionally expose yourself to different cultures and languages. I also suspect that people who learn that the concept of Theory of Mind exists are more likely to develop a better Theory of Mind themselves, and to realize the areas in which they might have been misconstruing their favorite heuristics as genuine insight into other people's mindsets.

If nonautistic people in any given culture are a majority, the assessment heuristics most commonly applied in this culture will be based members of that majority, for the most part. This makes it look as if members of that majority are able to frequently guess at the feelings and motivations of others. But the trick is that this only works when the "others" in question are similar to a particular critical degree -- once the similarity starts breaking down, so does the accuracy of the person's Theory of Mind.

When I was first diagnosed and began to learn more and more about autism in general, I actually did think of myself as lacking in Theory of Mind, since I have always had difficulty anticipating other people's actions and understanding their behavior. But then I started realizing that when I read descriptions of people more similarly-wired to me, I could frequenly understand where they were coming from. And I also realized that just as I frequenly misinterpreted other people, other people just as frequently misinterpreted me.

Over time, I found myself developing a much better sense of how to identify patterns that marked people as "more similar" or "less similar" to me...and now I misinterpret people a lot less frequently than before. And as this concept has percolated, I've found that a lot of the energy I used to spend on trying to figure out why other people behaved in such a bizarre and seemingly random manner has been redistributed toward trying to establish better communication with people, and to catch it when people are starting to make assumptions about me so I can set them straight.

Tying this back to the concept of morphological liberty, my point in all this is to demonstrate that when particular misconceptions are perpetuated, people affected by these misconceptions can sometimes end up being treated in a manner consistent with illusion rather than reality. And in favoring the illusion (which can frequently take the form of a convenient, but flawed, conceptual framework) over the person, that person's freedom is sometimes improperly curtailed.

Individuals making up a society that wishes to hold morphological and cognitive liberty in high regard must remain very cogent of power imbalances and how this affects treatment of, and responses to, aypical people -- whether the atypicality is something a person is born with, or whether it is something chosen and adopted in the process of self-creation.