If You Are Over 70, These Folks Want You Dead

As noted on Fight Aging!, someone in the UK has apparently written a petition which states that:

A number of biotechnology companies (which cannot be named here) are trying to allow rich people to extend their lifespans to over 100 years using pharmaceuticals. Unfortunately, this could take money from the poor and give it to the rich (in their long pensions) by increasing everyone else's pension contributions, and housing and healthcare costs. All health research directed towards extending longevity beyond 70 years should be banned to save our pension system and NHS from collapse and to give room for the wonders of the next generation.

So, that's it, senior citizens. Never mind that novel you were writing, that dollhouse you were building for the grandkids, or that new computer you were in the process of putting together. Your existence is threatening the "wonders of the next generation", so it's high time the world stopped wasting resources trying to keep you alive and healthy.

I'm hoping that the writer of this petition wasn't actually serious, but I'm guessing he probably was. And sadly, his attitude is only the tip of a very large iceberg. As far as we've come in our ethical evolution, even over the past few decades, there are still plenty of unfortunate memes making the rounds. It has always amazed me how close the ties are between resource-based arguments and discrimination. Feel free to call Godwin's Law on me here, but I think most semi-educated people in the world probably know what happened last time the idea that some people were "unworthy of life" due to the supposed "drain" they were on society took hold.

And now, in reaction to certain kinds of nascent and emerging technologies, I'm noticing something of a disturbing reappearance of these kinds of attitudes. For instance, I've come across suggestions that medical technology is being inappropriately applied so that certain kinds of people to survive -- at the "expense" of families and society at large.

This is one reason I frequently try to emphasize the convergence between progressive principles and disability rights. It's a matter of ethical consistency. A person's life is valuable regardless of how old they are. The petition quoted above is every bit as offensive as if, rather than signling out "people over 70" as threats to The System, they'd singled out blind people, or autistic people, or members of a disenfranchised ethnic group, or homosexuals. Remember that there are still people going around hinting that AIDS is a punishment for homosexuality and that deaths due to this disease have something to do with "maintaining the natural order".

So, the above-noted petition isn't just a grim misunderstanding of how resource distribution can work, but a terrible example of age-related bigotry. "The greatest good for the greatest number" sounds like a decent idea in the abstract, but that "number" is made up of individuals. And individuals vary in their health needs. Restricting lifesaving medicine and research to the young alone is as inhumane as restricting it to only white people, or to only one gender. And how can the maintenance of a pension system possibly be held in higher regard than a person's very life?

Avoiding Past Mistakes in Longevity Advocacy

Mark Plus offers a timely reality check regarding the progress (or lack thereof) of longevity medicine and cryonics over the past few decades. Those of us who are seriously committed to helping make healthy life extension a reality must not ever lose sight of the fact that we aren't the first folks to approach the subject. The linked essay by the recently-late Robert Anton Wilson contains quite a few statements that sound suspiciously like some of the more optimistic assertions being made about the state of longevity science today. For instance:

Similarly, Dr. Paul Segall of UC-Berketey predicts that we will be able to raise human lifespan to "400 years or more" by the 1990s. Robert Prehoda, M.D., says in his Extended Youth that we might eventually raise life expectancy to "1,000 years or more." Hundreds of similarly optimistic predictions by research­ers currently working in life extension can be found in Albert Rosenfdd's recent book, Prolongevity.

Expert opinion on longevity has grown steadily more optimistic every time it has been surveyed, because the lab results are better every year. In 1964, a group of scientists was polled on the question and predicted chemical control of aging by the early 21st Century. In 1969, two similar polls found scientific opinion predicting longevity would be achieved between 1993 (low estimate) and 2017 (high estimate.) Dr. Bernard Strehler, one of the nation's leading researchers on aging, predicted more recently that the breakthrough would occur sometime between 1981 and 2001.

Now, I've never heard of any of the people cited above, but the pattern is familiar. I don't doubt that plenty of people with dreams and aspirations similar those of present-day transhumanists probably read this essay back in 1978 and found that it bolstered their sense of hope. And while there's nothing wrong with hope, part of me can't help but wonder if putting too much stock in predictions, and in the sheer optimism of various people working in the health field, can lead to a kind of complacency.

I'm not saying that the present-day healthy life extension community is in any way complacent -- quite the opposite, in fact, from what I've experienced in my encounters with individuals from this community. But when we talk about and promote longevity science, it's important to remain cogent of the fact that there is no time to sit back and wait for things to fall into place.

One of my first encounters with the idea of life extension was discovering a book in the basement of one of the houses we lived in while I was growing up -- a book entitled Life Extension - A Practical Scientific Approach, by Durk Pearson and Sandy Shaw. Initially intrigued, I flipped through the pages with interest, but did not come away enlightened. There was much talk of supplements and off-label uses of various medications, as well as some weird stuff about not using toothpaste, alongside black-and-white images of the scantily-clad co-authors posing and flexing.

Plenty of claims were made, but one of the things that struck me about this book even as an adolescent was that the authors weren't all that old when they wrote the book. If they were in good health at the time, sheer (and actual) youth seems to be the most logical explanation for this. Now deeply into middle age they don't seem to be aging any more slowly than anyone else.

So, what can present-day longevity advocates make of all this? Well, for one thing, it is important to remember that negative data is still data -- we can look back now and identify what didn't work, try to figure out why it didn't work, and avoid making the same mistakes again. For instance, if this generation (meaning, the set of people presently alive) is to make any strides in developing effective longevity medicine, we cannot afford to underestimate our vulnerability. For all intents and purposes, we aren't much closer to superlongevity than we were in 1978 -- yes, we have more and better treatments for specific ailments, some of them age-related, but we don't have the ability yet to clean up the accumulated bodily damage that leads to the manifestations of age-related health decline and eventual death. This means that even those of us still in our twenties and thirties aren't in much of a better spot, longevity-wise, than our parents were at our age. And that is, and should be, a sobering thought for anyone who would call themselves a life-extensionist.

Now, I haven't moved myself over to the gloom-and-doom camp by any means -- if that were the case, I wouldn't be writing this. But I do take the failure of the "first wave" of longevity enthusiasm very seriously. It's a good example of what happens when people are willing to let themselves be pacified rather than motivated by optimism, and when people are willing to believe the claims of supplement-peddlers and wrinkle-cream and growth-hormone merchants despite the lack of long-term data proving the efficacy of any of these things (not to mention the growing pool of data disproving the effectiveness of many such interventions).

When you are still young and basically healthy, it can be very easy to fall into a pattern of attributing your continued survival to something you yourself are doing -- the fact that you drink eight glasses of water a day, the fact that you jog every morning, the fact that you take Bob's Magic Longevity Wheatgrass Serum every morning. But more than likely, the reason you feel good overall is because you haven't started to break down internally yet.

Certainly, there are things practically anyone can do to help maintain their health over time (which could, arguably, be considered a component of escape velocity) -- eat a low-calorie, nutrient-dense diet, exercise lightly, maintain a consistent sleep schedule, keep your stress levels under control -- but if your longevity aspirations stretch further than 70 or 80 years or so, you'd best be looking into supporting, investing in, and possibly contributing toward programs and projects that aim to actually help people stay healthier longer, rather than just trying to patch up serious problems (heart disease, cancer, etc.) as they occur.

Another question that the failures of the past should prompt is: what is different, if anything, about this generation? What makes us think that it could be us who manage to reach some level of longevity escape velocity? Is there any basis for thinking this at all, or is it all just wishful thinking and arrogance (a common cry of longevity critics)?

As for what is different about this generation, while it is difficult to tell at this point in time which of today's actual practical efforts are going to pan out (if any), we can at least claim a few things that 1978's life-extensionists could not. We have high-level attention on longevity. We have a highly promising nonprofit organization that, at the time of this writing, has managed to raise over 4 million dollars for targeted longevity research. We have mapped the human genome. We have a better idea of how calorie restriction works to extend life in mammals (which, while it won't lead to superlongevity, could lead to treatments that help more people reach escape velocity). We have research efforts underway at major universities.

Couple all this with the fact that modern interconnectivity makes it possible for scientists to exchange data with other scientists, anywhere in the world, practically instantaneously -- and you have a recipe for tremendous potential. I don't think anyone can deny that there's definitely potential now that didn't exist in 1978 with regard to the possibility of effective longevity medicine. And the deciding factor as far as whether that potential gets realized could very well be be whether people stay sufficiently focused and manage to avoid getting caught up in psychological and emotional traps, of either the overconfident or fatalistic nature.

Say It With Textiles

In response to a suggestion from an anonymous commenter, I now have an "Existence is Wonderful" design available from my small cafepress endeavor.

If you are so inclined, you can express an emphatic "gee, being alive RULES!" sentiment through ink and fabric, as shown below:





Enjoy! (And, again for the record, I am not making any money off this...I'm just providing a design per request).

Just What's So Wonderful About This Whole Existence Thing Anyway?

Amazingly (to me), I still encounter people every so often who ask this question. It comes up in various different contexts: sometimes when I've been nattering on excitedly about life extension research, and sometimes just in the goings-on of daily life. And it never fails to take me aback. Regardless of what has been going on in my life (and believe me, it isn't always sunshine, kittens, and roses), the value of existence has never been something I've questioned.

I've questioned its meaning on many occasions, and I went through the requisite adolescent existential crisis, but the inherent worth of existence, particularly conscious existence, seems self-evident to me. Even on my moodiest day as a teenager, I still had an intense and unquestionable sense that being was something so precious and exquisite that it needed to be acknowledged and experienced through as many means as possible, for as long as possible.

None of this has anything to do with any sort of supernatural belief, nor does it necessitate a view of reality than anthropomorphizes the universe-at-large and assigns it the intents and appetites of (relatively speaking) newly-sentient hairless apes. Rather, it simply means that even in the absence of benevolent (or malevolent) creator entities, and even if life does not have some sort of disembodied "meaning" out there floating around waiting to be discovered by enlightened primates or the machines we eventually construct, there are still innumerable things that make existence a wholly worthwhile endeavor.

The raw materials wrought by and through space and time, the intricate interactions of forces and feedback, the evolved entity that is the imagination -- all these things together comprise a superstructure of potential and complexity of a sort that needs nothing but its very existence to prove its worth.

This superstructure is what I see in the drawing of every breath, in the shifting of every glance, in every moonlight dash out into the driveway to breathlessly take in snatches of constellation and frost-hued air. It is the first thing that greets me when the alarm blares in the morning, and the last thing that hangs before me like a camera-flash afterimage before I fall into sleep every night.

I do not live my life according to a checklist. Well, that's not exactly true -- I do make use of daily to-do lists, and I've gone through more than my share of sticky notes in this endeavor. But that's not the kind of checklist I am referring to here. Rather, I am referring to the kind of checklist that goes something like this: you're born, you grow into a small child, you play in particular ways, you go to school, you go to the prom, you find a mate and get married, you join a company and advance through the ranks, you eventually retire, you plan for your funeral, and finally, you die.

Though life-extensionists are frequently reminded of the fact that many people find moral fault in any expressed desire to thwart the enemy at the end, perhaps fewer are viscerally aware of just how pervasive the life-script checklist can be in a culture. This life-script manifests itself in numerous areas (from play to school to career to lifestyle in general), and people's reactions to those who deviate from it can be curiously hostile.

I started becoming aware of this hostility at a fairly early age, when it became evident to me that I was frequently the only female in any group of my age-peers who made a beeline for the spaceships and construction toys. I remember being literally chased down by a group of girls my age when I was eleven years old, who were determined to give me a "makeover".

I never found it particularly difficult to resist peer pressure, but for people without the kind of brain wiring that gives me that kind of resistance, I can see how it can be problematic when your strong interest in things your peers don't care about can mean you'll end up playing alone most of the time. Similarly, I have to wonder how many people might avoid learning more about longevity research because they fear that even if they themselves find a way to treat the health decline associated with their own old age, their friends will not follow suit (or more immediately, that their friends will dismiss their desire to live as long as possible as hubris or self-importance).

While I understand that social pressures can be very real for many, I don't really see how any social pressure can override permanently the sheer force by which the, well, wonderfulness of existence reveals itself at all levels of awareness that can be conceived of as awareness. It is my hope that somehow, perhaps, over time I might be able to contribute toward helping more people see this wonderfulness.

It's all around everyone, everywhere, all the time.

It is not to be found in ultimate fame or fortune or even security.

Rather, it is in the slide of cool sheets on a breezy summer evening, in the crunch of a raspberry seed, in the feeling of soaring as you find a mirror of your own inner workings in art or algorithm.

It is in the trees, it is in the gas giants, in the nebulae, in a future wrought of laughter and imagination and intent.

It is in the rising and falling of breath and in the whirring of machines, and in the careful construction of artificial neurons in a vast database in a large, cold room.

It is in the eyes of a cat and the musk of new-cut grass.

It is in the domes and spires of ancient cities, and of cities wrought in silicon and mind alone.

It is in the outdoors, in the cellular membranes of everything alive.

It is in the Internet and, it is in music.

It is so pervasive and so utterly, indescribably beautiful that words can scarcely wrap themselves around it.

This is why I seek to be alive: to continue to have (and be) a particular pattern in spacetime of a sort capable of experiencing a sense of the shifting and yearning of the superstructure of reality.

Humans have long constructed art and media in ways that represent dwarfed microcosms of the life-script: books and songs and symphonies characterized by exposition, climax, denouement, and end.

But now: imagine films one hundred years long, or books that are written as a kind of joyous and constant exposition -- not punctuated by a single megaclimax, but by millions upon millions of such events.

Imagine poems of such depth and complexity that nobody younger than one thousand can understand their secrets.

While the loveliness and significance of the earliest of human accomplishments in media and science cannot be denied, a future of long-lived consciousnesses could bring with it not only art-forms that mimic the structures of the past, but new configurations that challenge and delight sensory and contemplative experience in ways we can only guess at now. In order to do this wonderful existence a scant percentage of the justice it deserves, we need to run the experiment.

Yesterday's Future

I have long been fascinated by old magazine articles and advertisements that describe the technology of the times or make speculations about the future. As a teenager, I would spend hours hunting in my great-grandmother's basement amidst musty boxes for the publications containing these treasures.

At one point, in a small room that my siblings and I always referred to as "the bomb shelter" (since it contained a cot, a portable toilet, first-aid supplies, and a can of something called "Family Emergency Protein Food Product") I found a plastic bag filled with some very well-preserved copies of Science Digest. Great-grandma let me take the magazines home, and as far as I know, they are stowed somewhere in my apartment to this very day (though I couldn't tell you where right now, which unfortunately means I can't scan any of them in and post the images).

In reading the decades-old periodicals, I was struck by both the accuracy and quality of some of the articles (e.g., writings on early space flight and accessible commentary on Einstein's notions of relativity). But I was also equally struck by how, well, silly some of the articles seemed.

There was an unmistakable tone of soaring excitement, and yet it was tinged with a kind of conservatism -- images of high-tech nuclear-powered kitchens contrasted starkly with sketches of archetypical aproned housewives. From both a futurist and cultural-anthropology standpoint, I am not sure how this sort of thing could not be fascinating.

Media and advertisement is perhaps a kind of cultural background noise -- and admittedly, most days I find modern advertising and much of the popular media to be irritating. Nevertheless, sometimes there is some very intriguing information buried in the noise -- media frequently carries the pulse of a culture in a manner that can be examined and extricated as a sort of progress barometer. When I was a small child in the 1980s, I very rarely saw girls in toy catalogs playing with tool sets and spaceship toys; now there is a bit more of this, and there are also more women working in scientific and high-technology fields than before. Something tells me this isn't just coincidence.

Needless to say, the Science Digests were only the beginning -- now that I knew how interesting that sort of publication was, I would remain on the lookout for other, similar magazines through the years, though these delightful discoveries turned out to be few and far between. But now, we have this wonderful thing called the Internet. Which means that finding physical copies of old and interesting magazines is no longer necessary for every individual who wants to look at them -- thanks to the joys of modern electronic interconnectivity, fascinating images and cheerfully apocalyptic commentary are frequently only a few keystrokes away.

For instance, at a site called Modern Mechanix (subtitled, "Yesterday’s tomorrow, today.") you can find literally hundreds of magazine covers, articles, and advertisements from decades gone by (particularly the 1930s - 1960s). Someone apparently has access to numerous backdated issues of Popular Science, Popular Mechanics, National Geographic, and Mechanix Illustrated (among others), and has kindly chosen to share them with the world.

A few particular articles that readers here might find intriguing are:

1. Miracles You'll See In The Next Fifty Years



Here, we learn that by the year 2000, everything is going to be very, very tidy. And brightly lit! The example (fictional) town of Tottenville is described as follows:

There are parks and playgrounds and green open spaces not only around detached houses but also around apartment houses. The heart of the town is the airport. Surrounding it are business houses, factories and hotels. In concentric circles beyond these lie the residential districts.

Tottenville is as clean as a whistle and quiet. It is a crime to burn raw coal and pollute air with smoke and soot. In the homes electricity is used to warm walls and to cook. Factories all burn gas, which is generated in sealed mines. The tars are removed and sold to the chemical industry for their values, and the gas thus laundered is piped to a thousand communities.

The highways that radiate from Tottenville are much like those of today, except that they are broader with hardly any curves. In some of the older cities, difficult to change because of the immense investment in real estate and buildings, the highways are double-decked. The upper deck is for fast nonstop traffic; the lower deck is much like our avenues, with brightly illuminated shops. Beneath the lower deck is the level reserved entirely for business vehicles.

Tottenville is illuminated by electric “suns” suspended from arms on steel towers 200 feet high. There are also lamps which are just as bright and varicolored as those that now dazzle us on every Main Street. But the process of generating the light is more like that which occurs in the sun. Atoms are bombarded by electrons and other minute projectiles, electrically excited in this way and made to glow.

Well, we do use electricity to heat and cook nowadays (at least in some homes), but I am still trying to figure out the appeal and purpose of "electric suns" and why we'd want to mount them on 200-foot towers. Light pollution, anyone?

Anyway, if you read onward, you will find out that not only are those ubiquitous housewives going to be able to clean the entire dwelling with a hose, but families will have their own private helicopters! And that's not all...world hunger will be solved through the creation of "sugary foods" out of wood pulp, and candy out of recycled underwear.

I realize this article was probably authored for a popular audience and therefore written with attention-getting in mind, but underwear candy?

In terms of "what they got right" (or at least, nearly right), this article did at least make some reasonable speculations regarding the growth of communication interconnectivity -- it's really funny to read a description of something that is almost exactly like the Internet, but without the "internet" part:

Of course the Dobsons have a television set. But it is connected with the telephones as well as with the radio receiver, so that when Joe Dobson and a friend in a distant city talk over the telephone they also see each other. Businessmen have television conferences. Each man is surrounded by half a dozen television screens on which he sees those taking part in the discussion. Documents are held up for examination; samples of goods are displayed. In fact, Jane Dobson does much of her shopping by television. Department stores obligingly hold up for her inspection bolts of fabric or show her new styles of clothing.

It's interesting how they did get the "shop from home" thing fairly on-target, but assumed that department-store personnel would be holding up the merchandise for Housewife Jane to examine. And of course, there's that whole tacit, unstated assumption that a woman's place will still be in the kitchen, despite the fact that she'll be serving up food prepared from "frozen bricks".

2. Birth Control - A Two-Edged Sword?



I suppose I can only be thankful that this 1922 article from "Physical Culture" now comes across as absurd rather than mainstream. Though I realize that prejudice (against women and minorities of all sorts) is still not completely vanquished, at least we're not getting things like this in mainstream print these days:

Thousands of women are shirking their tremendous responsibilities, n[o]t because they do not want babies, but because they have allowed themselves to want phonographs, and upholstered furniture, and installment pianos, and “freedom,” and travel, more than they want to carry their fair share of the world-old burden of woman. Thousands and mil-lions of women are shouting “birth control” to-day simply because they don’t want to tote fair and play the big game of carrying on this vast scheme of organic evolution towards a happier and better race.

Check out the scare quotes on "freedom". Enough said.

3. CAN SCIENCE MAKE US LIVE FOREVER?



Apparently, Dr. Alexis Carrel was at least somewhat optimistic about the notion of life extension, despite some of the bizarre speculative claims made in this article. Nevertheless, I find it interesting how closely some of the statements made in this 1936 article mirror today's more mainstream views on the prospects of superlongevity:

It is quite possible, too, Dr. Carrel believes, that men and women may be enabled to live on vigorously to incredible age simply through a better understanding of the mysteries of the human body. Even today we have centenarians in every land who prove that our bodies hold secrets of vitality we do not begin to suspect.

The conquering of age is not to be looked for in our own generation, or for many that will follow it. Dr. Carrel’s view of the future is an extremely long distance one, and he is careful to make it clear that he does not predict human immortality.

“There is no hope of ever conquering old age and death,” he says. “But it is quite probable that the maximum duration of life can be more or less considerably extended.”

Fundamentally, of course, his predictions are no more unbelievable than Roger Bacon’s prophecy of the airplane in the fifteenth century. Dr. Carrel, like Bacon, is looking many centuries into the future.

The absolutism of the "no hope, ever" part of the statement quoted above sits somewhat (and rather ridiculously) in contrast to assertions also in the article that "Heavy water may be fountain of youth". However, in many respects this article is strikingly similar to modern popular articles on the subject of longevity -- a few quotes from a cautious scientist-type followed by a few paragraphs of wide-eyed wonder at the latest nostrum to come out of the health-fad world.

4. Second Dog Is Restored to Life

From 1935 comes a Zombie Dog Story! An account of scientists managing to revive a dog that had been clinically dead for half an hour. I can't help but feel somewhat sorry for the dogs, but it was an interesting proof of concept, particularly for so long ago.

---

Again, I highly recommend perusing the site linked above...not just because of its entertainment value, but because of the way it throws the obvious progress of social evolution that has occurred over the past few decades into sharp relief. The technology (and the technology predictions) are certainly interesting to look at, but perhaps even more interesting is the cultural subtext contained amidst the grand proclamations of the sparkling, mechanized world-to-come.

Why Progressives Need To Get A Clue About Disability

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. 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.

On Longevity Medicine and Resources

While I do firmly believe that existence is, in fact, pretty wonderful, I realize it is not wonderful for everyone, everywhere, all the time.

This is obvious to anyone who so much as picks up a newspaper or walks out their front door. And while some people may indeed be apathetic and complacent or defeatist about it, this is not true of everyone. Hence, there are a lot of charitable and humanitarian groups in the world making a tremendous effort to improve living conditions for people all over the world. Consider American Red Cross, which provides a multitude of different services, and the Global Water Foundation which is focused on addressing the problem of maintaining clean drinking and sanitation water in poorer areas, and UNICEF which focuses primarily on the reduction of child mortality.

Though no organization of any kind is perfect, people are at least trying, and with the growing information infrastructure in the world, it is getting harder and harder for anyone to ignore Big Problems. And while it is clear that these problems are not being addressed as fast as they would ideally, there is still some room for optimism, so long as people keep realizing that they personally can be part of the solution.

Clearly, there is no shortage of people in the world capable of helping to fund and volunteer their time for worthy causes. And at the risk of prompting a debate between people of different economic persuasions, I highly doubt that there's an actual scarcity of needed resources. There might be local scarcities, and I'm not saying resources are infinite, but it seems undeniable that there is plenty more we (as in "we of the highest standard of living in the world in these industrialized nations") could be doing to address global misery.

The World Health organization reports that:

The state of adult health at the beginning of the 21st century is characterised by two major trends: slowing of gains and widening health gaps; and the increasing complexity of the burden of disease.

The fact that gains are slowing, anywhere, is extremely problematic -- and it is most certainly important to work to address this. However, nothing is going to happen to help anyone if we spend all our time arguing over which cause is most worthy. It isn't too hard to find a worthy cause -- hopefully someday it will be much harder, but right now, there are still a lot of things that threaten people's lives and well-being to a degree that ought to be unacceptable to any rational person.

My equation is simple: if it kills people, it's bad, and ought to be stopped. Things that kill people should be a priority, regardless of who they are killing, how old these people are, how they are configured, or where they people live.

In about 1998, before I knew that anyone was actually trying to do something about addressing age-related disease (and certainly, there was no Methuselah Foundation or Longevity Dividend back then), I went through a kind of sudden and overwhelming realization with regard to how utterly lucky I was.

Lucky to have been born into a home with a solid roof, plenty of food, and access to medical care.

Lucky to have had the opportunity to get a decent (if imperfect) education up to that point.

Lucky for all kinds of other reasons that had nothing to do with anything I myself had done -- rather, lucky due to the hard work of those who came before me and due to the support of family and others.

So, there I was at age 19, thinking, "Um, how did I get here? And how can I possibly even deserve a life like this? And what is the worst thing in the world, how can I avoid it, and how can I help others avoid it?"

The obvious answer to this question seemed clear: the suffering and death of innocent people. And when I mentally went through the list of everything, from violence to disease to accidents, that I imagined as being agents of suffering and death, one thing stood out on top of it all: aging.

Even if we managed to cure cancer, end dysentery, thwart the Ebola virus, conquer AIDS, and address violent crime, people will still be growing old, becoming infirm, and dying. And while nobody knows yet the degree to which age-related disease can be addressed medically, or how long humans will be able to live as a result, it is still in my estimation a very worthy effort to look specifically at the kinds of conditions disproportionately affecting and killing the elderly.

Funding longevity research or initiatives like SENS does not mean anyone is ignoring the plight of people in developing nations who lack basic medical care and education. The world is literally teeming with people, many of which have organized to take on the challenges of addressing global suffering -- and though things definitely are not perfect, they are improving in some respects, and I expect that this will continue.

Also, just because people don't announce it publicly every time they make a charitable donation or engage in some sort of endeavor associated with addressing a global threat or crisis, this doesn't mean they aren't doing anything or contributing. I object to the characterization of, say, life-extensionists as people who only care about "the rich" (while this is something to watch out for, as is a dogmatic belief in "trickle-down economics", it doesn't characterize everyone interested in longevity medicine). As far as I can tell, most who are involved in longevity advocacy care about people, plain and simple. Regardless of age, income, country of origin, ethnic background, you name it.

A person can, and should, maintain awareness of what is going on in the world at large, but this does not mean they can devote all their time and resources to every cause that comes along. If you want to change the world and help people, that doesn't just entail waving your arms around and lamenting what is going wrong, but choosing a few targets and putting some time and energy into them.

Humans may be fairly adept at organizing to get tasks accomplished, but it seems much more likely that more will be accomplished through the parallel efforts of numerous, focused organizations and groups than by everyone trying to get together in one big mass and pick one problem and beat at it until it's gone. The complexity of the world, and the sheer size of the population, makes that a ridiculous prospect.

All any of us can do is choose our battles as best we can, based on the information available to us. And considering that the elderly are one of the most discriminated against, and most neglected, populations in the world, it seems that the effort to address age-related infirmity and death is one that could use more support.

EIW Audio - Episode 8: Meeting Life Extensionists, Personhood, And Why Being Alive Rules

Existence is Wonderful Audio - Episode 8 has been posted. About 26 minutes long, no theme music (I'm still experimenting in that regard), and as always, no filler!

Topics include:

1. A brief note about meeting with fellow life-extensionists and Methuselah Foundation folks last Saturday



2. A discussion of personhood, and my interpretation of the idea that not all persons are human, and not all humans are persons. This particular area of discussion, at least for me, illustrates the lack of an Official Transhumanist Party Line -- I am not as much of a utilitarian ethicist as some are (as in, I am less comfortable with euthanasia than some might be), and that's okay, because we all have different minds and different perspectives when it comes to certain issues.

I think people need to keep asking the question, "How do you KNOW this person isn't really self-aware?" -- the ability to ask that question will definitely be relevant when looking to recognize all kinds of potential minds. It is sometimes difficult to even ask this question without getting weirdly simplistic responses from people, which I find puzzling. Self-awareness requires a brain (at least in humans) that is producing some kind of electrical activity and that hasn't necrotized or been put through a blender, but beyond that, I don't know that neuroscience has been able to really zero in on the "self-awareness module" quite yet.

I am not a fan of "ideologies" in general -- rather, I prefer to analyze situations on a more individual basis, which results in my principles not necessarily being easy to predict if you only know one or two of my opinions.

I read something earlier this week that really resonated with me in this regard -- basically, the idea that by subscribing too strongly to a pre-packaged ideology, you can actually cut yourself off from reality in some respects. Ideas are great, but ideologies too frequently fall into the category of "cognitive constraint". And my brain doesn't really seem wired for that kind of thing anyway; philosophy is my salad bar, not my TV dinner.

3. Some comments on the convergence between disability rights and ideas like cryonics and life extension in general -- all these factors concern vulnerable populations, after all.

4. How cryonics might affect critical care decisions

5. Reading of an older entry that I think at least partially answers the question, "What's so great about life, anyway?" in my case.

Also, I recently started a cafepress store. I'm just sharing this in case anyone is interested -- I just did it for fun and am not making any money off it, but I plan to create some additional designs in the future that some of the readership here might like. Though I realize that "natural" is not synonymous with "good", I do agree with the sentiment that "Technology is Natural" -- so I put it on a t-shirt.

Finally, below is my Second Life avatar as of last night; I want those wings!

Geriatrics, Gerontology, and Engineering -- A Necessary Link

Every day, elderly people die as a result of phenomena in their bodies that you rarely, if ever, see in younger people (and that are interpreted as definitive signs of disease when they are).

At a meeting yesterday with a group of fellow longevity advocates, one issue that turned into a point of discussion was that of whether it is worth presenting longevity treatments as means to mitigate specific diseases, or whether doing so is simply a distraction from the fundamental issue of addressing aging itself (or whether it really matters).

Strictly speaking, there is potential for the realization of any one of the seven aspects of SENS to result in effective cures for various specific age-associated illnesses. For instance, if Lyso-SENS leads to treatments for deadly age-related storage diseases, people who might otherwise have died of these diseases will (obviously) still be alive -- meaning that they have an increased chance of living to enjoy the next advance in longevity treatments.

Addressing specific diseases associated with aging will certainly contribute toward more people being able to achieve escape velocity, however, just treating the specific diseases as they come up will by no means be enough to result in the kind of rejuvenation that will actually allow people to survive healthily for as long as they'd probably like to.

The changes associated with getting older don't start out problematic -- it is their accumulation and eventual spiral out of control that actually contributes toward obvious pathology. Effective longevity treatments must, in order to be worth applying, be able to address age-associated changes at a stage when they aren't necessarily causing actual, observable problems. However, the medical establishment isn't accustomed to thinking in this manner.

Geriatricians are devoted to the alleviation of pain and maintenance of healthy functioning (at least as much as possible) in the face of age-related pathology, but geriatric medicine has so far not exhibited sufficient interest in getting to the root causes of the pathologies being addressed prior to their becoming truly problematic.

On the other side of things, gerontology is interested in things like root causes and systemic differences between young and old bodies, however, the gerontological approach is more exploratory than action-oriented -- certainly, not action-oriented enough so as to prompt a focused and concerted effort to start saving people's lives in the near-enough future.

The engineering approach to addressing age-related decline and death is something of a new approach -- one that very well might be the needed "missing link" between geriatrics and gerontology. An engineering approach is one that focuses on appropriate maintenance of bodily systems, through repair and replacement of worn-out or disease-causing physical elements.

And if properly executed, an engineering approach encompasses both the acknowledgement that specific diseases do harm and kill people, and the acknowledgement that in order to stop people from dying, we need to address systemic changes in the body that both contribute to specific, known diseases and that result in what most people consider to be "normal aging".

The issue with focusing too heavily on the "specific disease" aspect of the equation is that the existing medical infrastructure doesn't treat the systemic failure that accompanies aging as a disease -- at least not in elderly people. Therefore if given the choice between funding an engineering approach to rejuvenation, or funding a study meant to address a particular pathology (such as hypertension), the particular pathology may get preferential treatment.

Meanwhile, people are still experiencing progressive systemic breakdown, which is making them weaker and more vulnerable to pathology and death. Clearly, a paradigm shift is in order.

Listing the specific diseases that an effective longevity treatment could address should be part of the overall explanation of what the goals of the healthy life extension effort are. This is probably also a reasonable way of getting the attention of the medical community -- after all, it doesn't seem conceivable that they wouldn't be interested in a potential means to resolve heart disease, Alzheimer's, or any other specific pathology.

But it is important to remember that by addressing the underlying phenomena associated with aging, the specific pathologies commonly found in elderly individuals will probably not appear -- not because specific, targeted cures for those diseases have necessarily been found (though they probably will be at some point) but because the body itself has been rejuvenated to a stronger, more resilient state.

Ashley X - Avoiding Oversimplification

In discussions surrounding bodily-autonomy issues associated with disability, there can be a tendency on all sides to attempt to reduce everything to gut reactions and sound bites when, in fact, a more complex analysis is needed.

What bothers me most about the case of Ashley X is not so much the kind of life Ashley is likely to have now that she has had her growth and physical development arrested, but rather, the kinds of statements various people (including Ashley's parents) are making in defense of the procedure, in particular those that suggest that certain minds shouldn't go with certain bodies.

Who gets to decide that another person's mind doesn't "match" their body? If a person chose to modify themselves, say, to look more like a cat, does that mean that their existence becomes "grotesque"?

What, exactly, does calling a perceived mind-body mismatch "grotesque" accomplish?

It certainly doesn't contribute toward the development of an appropriate ethical understanding of Ashley's situation and others like it. And it would be horrific if hospital ethics boards routinely approved radical modification of children based on someone's notion of which kinds of minds "go" with which kinds of bodies. Clearly, the statement that a mind like Ashley's doesn't belong in a particular kind of body is not a very substantial argument, or even an argument at all (particularly if it comes from someone who is generally in favor of people being able to modify themselves to look however they wish).

Perhaps Ashley is likely to be more physically comfortable as a smaller person, and certainly, there is nothing inherently wrong with being small, even as an adult. It's not that she's going to be small, it's how she got that way, that is driving the widespread debates on this matter. The issues here are numerous, and yet very few of the most important issues have anything to do with the nature of Ashley's present, modified configuration. Among the important issues to consider are:

1. That something radical has been done to the body of a person who had no way of expressing consent or resisting what was happening to her.

The "resisting" part is important. Of course, it does not make sense to claim that clear consent is necessary in order to do anything to anyone (I'm sure that most five-year-olds don't consent to getting their booster shots, but from an ethical standpoint, it is fairly obvious that protecting children against fatal disease is more important than sparing them the momentary pain and loss of bodily autonomy that getting the shot entails).

However, the fact that some people can neither consent to nor resist anything that is done to them means that extreme care must be taken to protect such individuals from abuses -- including abuses of power. When someone literally cannot protest anything that happens to them, they are at the absolute and utter mercy of all those around them. This means that care must be taken not to do things to certain people just because their helplessness makes it possible.

2. While parents are expected and indeed, obligated, to make medical decisions on behalf of their children, this does not mean that any decision a parent makes ought to be beyond scrutiny simply because the parents make this decision based on love and good intentions.

I have seen quite a bit of commentary along the lines of, "Well, until you are in the same position as Ashley's parents, you have no right to judge." Note first that bringing up the serious ethical implications of the "Ashley Treatment" is not the same as judging. When situations like this come up, it is absolutely unacceptable to simply take them at face value and assume that everything is fine because the parents in question love their child. Or, at the very least, the fact that the parents love their child (or perceive what they are feeling toward her as "love") is not, in and of itself, a justification for anything.

That love, and the good intentions behind the actions taken, can be fully acknowledged without deciding that the action is utterly beyond scrutiny. Why should any action be beyond scrutiny based on the motivations behind it alone?

3. There does seem to be some validity to the argument that the procedures applied to Ashley could potentially end up saving her life. However, there is also validity to the argument that the same treatments applied to any child, disabled or not, could also end up saving that child's life.

Objectively speaking, removal of any person's reproductive organs will minimize the chance of that person dying from cancer or disease of those reproductive organs, however, I highly doubt you will come across any arguments that all children should be given the "Ashley Treatment" on the basis that it could prevent disease later in their lives.

When it comes down to it, people actively have only (a) the rights they are capable of articulating and fighting for, and (b) the rights that the society they live in grants them. Therefore, sentient persons must take full responsibility for the process of coming up with and assigning rights appropriately. Despite the fact that "rights" weren't handed down to us from on high, there are still better and worse ways of establishing them and consistently applying them.

Does any child have the "right" to not undergo the Ashley Treatment? Perhaps all children ought to have their reproductive organs removed -- just think, you could eliminate your daughter's chances of ever getting breast cancer by removing her breasts at a young age.

She wouldn't be able to breast-feed, but at least she wouldn't die of cancer. Removal of the uterus might be considered along similar lines -- not only would it prevent any girl's possibility of getting uterine cancer, it would also let her avoid the pain and inconvenience of menstruation. And, it would have the added benefit of preventing her from having children later in life, thereby avoiding adding to a burgeoning population.

Note that the above is just a thought experiment -- I do not want to be quoted out of context as someone in favor of surgically modifying all children. Rather, it is intended to encourage people to think about the strength of their arguments. If it would be unethical to perform a pre-emptive surgery like Ashley's on a nondisabled child, based on the same medical notions (e.g., cancer risk), why would it be unethical?

I am anticipating that some might respond to this question with the suggestion that whether or not to apply a procedure like the Ashley treatment is contingent upon an attempt to optimize constraints. For a person that is fully mobile and communicative, organs like breasts and a uterus are much more likely to be utilized by their owner -- therefore, to remove them would be to apply a constraint inappropriately.

However, for a person that cannot move or communicate in a recognizable manner, removing these organs might allow for a comparatively less constrained life given that person's overall set of circumstances. This kind of response is based on a constraint-centered set of ethics, and is probably valid within that framework, but is this really the only applicable framework? And if so, why?

The point I'm trying to make is that treatments like Ashley's do have the potential to set a kind of precedent, whether they intend to or not. This situation demands that we ask difficult questions regarding how people with disabilities should be treated in comparison to nondisabled people.

Obviously the solution is not to treat everyone exactly the same -- a person's morphological configuration will affect how they ought to be treated (consider the fact that it doesn't make sense to screen women for prostate cancer). But you can apply a consistent set of ethics without treating everyone exactly the same, and that is what is called for when considering disability issues.

4. It's not the way Ashley ended up being configured -- I would be the first to argue that there's no such thing as a "normal" body in the first place, and a girl without breasts or a uterus is no less of a person because of the absence of those organs. Rather, it's the means by which Ashley ended up in that configuration, and the various assumptions made in an effort at bolstering justification beyond the purely medical.

For instance, the assertion that Ashley has, and will always have, "the mind of a three-month-old" is simply and factually incorrect. She doesn't have the mind of a three-month-old -- she has the mind of a developmentally disabled nine-year-old. And when she is thirty, she will have the mind of a thirty-year-old, regardless of her level of disability at that point in her life. Not an average thirty-year-old, but a thirty-year-old nonetheless. Using these age metaphors (because that's really what they are) tends to obfuscate, and to discourage people from seeking details.

Nobody really can say how Ashley experiences the world, but it's unlikely that she experiences it the way someone who has only lived for three months experiences it. I haven't seen any documentation on whether Ashley has undergone any brain scans, whether anyone has attempted to establish that she might possibly be communicating (aside from her parents noting that she seems to prefer lying down to sitting in a wheelchair), or any specific statements on how her "mental age" diagnosis was arrived at.

I am not saying that it should be assumed that Ashley is actually performing quantum physics calculations in her head, but when someone has close to zero motor/muscular control, the fact that they cannot speak or control their eye gaze should not be assumed to be indicative that she cannot think complex thoughts. If Ashley's lack of motor / muscular control is the only criteria that her "mental age" calculation is based on, that's a big problem.

I am not saying this to be politically correct, I am saying that from the scientific perspective, I think it is inappropriate to assign and assume a mental state to anyone based on their motor abilities. And I am not willing to just assume that the doctors have performed an exhaustive attempt at assessing Ashley's brain functioning -- I am not willing to take medical opinion on faith, when it comes to me or anyone else.

Doctors can be wrong, and they can also be negligent -- when you have a group of doctors and an ethics committee perhaps this possibility can be minimized somewhat, but it cannot be emphasized enough that assessing the mental functioning of someone with severe physical limitations is extremely difficult. To what degree was this difficulty taken into account when assessing Ashley's mental state -- or was the assessment simply made based on the idea that it was necessary to assign her to a category like this in order to guide her treatment regimen? This isn't special pleading or wishful thinking, it's a request for information.

If anything, people need to be allowed to ask these questions...it shouldn't be taboo to ask them. I don't want to see a "bioethics versus disability rights", or worse, an "ethics community" (whatever that is) versus "disabled persons" divide. Ethics must include disabled people in the set of persons to which ethics are properly applied, or else they're not really ethics. This doesn't mean treating everyone the same, or not recognizing the difficulty of caring for the severely disabled, or not ever doing anything medically to a person who cannot consent or protest.

However, the power imbalances experienced by those who cannot easily defend or assert themselves are very real, and the potential implications of the Ashley Treatment for persons who cannot walk, talk, feed themselves, etc. must be considered seriously. When you yourself cannot speak or eat without assistance, it must be tremendously disturbing to hear about people being recommended for radical nonconsensual procedures (or even euthanasia) based on the fact that they share disabilities quite similar to yours in some respects.

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Note:
Please don't say I am not thinking about the parents, or the health and safety concerns of caring for someone with severe disabilities -- of course I am thinking of these things, and I do think that better support needs to be provided to families and caregivers. Nothing I have said in this writing contradicts the idea that more support is needed -- it's just that the need for support is already widely acknowledged, and I don't think that my writing about it would really add much of anything to the ongoing discussions. Rather, I've chosen to focus on some issues I haven't seen raised quite as frequently.

Of Persons and (apparent) Paradox

Psychology Today recently published an article entitled, The Girl With a Boy's Brain, about 24-year-old neuroscience graduate student Kiriana Cowansage. No, it's not an article about a transgendered person, but rather a female who is described as having Asperger's Syndrome. I was intrigued to read such an article because while AS females most certainly exist, most writings that mention autism in any form are primarily focused on boys and men.* And this article almost isn't an exception -- look back at the title.

Yes, the subject of the article is female, but why describe her as having a "boy's" brain? Brain variation in general is an equal-opportunity phenomenon, and while certain kinds of variation are certainly more common in a particular gender, the theory that autism represents a kind of "extreme maleness" is controversial and unproven. And despite the observation that autistic females may seem more like nonautistic males than nonautistic females do, on average, consider the possibility that perhaps attempting to "gender" the autistic brain and demeanor according to nonautistic normative observations is simply incorrect.

In fact, it could very well be that many comparisons which attempt to define aspects of autistic neurology as anomalous or pathological are nothing less than misguided. University of Montreal psychiatrist and autism researcher Dr. Laurent Mottron notes, "You don't say a dog is ill or dumb because it cannot climb a tree. You'd only say that if your vocabulary of description is that of a cat."

This is not to say that autistics are not human -- however, it is to say that there is, perhaps, a critical need for those in the practice of trying to delineate personhood to realize what it means to recognize all kinds of potential minds. As Dr. Mottron advises, "People are afraid of this because they don't want to seem to be rejecting autistics as not human, but we have to overcome this fear and say that humanity is composed of heterogeneous people." (emphasis mine)

This is important -- I've long thought it crucial to avoid insisting that recognized minds "look" obviously and typically human (per recognized-at-the-time cultural norms).

If anyone needs proof as to why this is necessary, they need only look at history and observe that all too recently, even "mild" gender-variant behavior (let alone homosexuality) was considered to be evidence of a disorder -- this article excerpt from 1973 describes boys with gender-variant behavior as "deviant" and notes that early effeminate behavior should be examined, considering that "gender identity or behavior problems are implicated for a significant proportion of adult transsexuals, transvestites, and homosexuals".

Notice how it isn't even stated that there's anything wrong with being transsexual, transvestite, or homosexual -- these things are simply and implicitly accepted as things that are obviously pathological. Many articles written today about autism display a similar implicit assumption, and while some people certainly do have issues that should be addressed, it certainly must be noted that the implicit assumption itself is problematic.

In dealing with people as in dealing with politics, addressing problems on an issue-by-issue basis (such as providing a person with speech therapy, or with treatment for anxiety) makes a lot more sense than defining a platform position and adhering to it (as in, defining "autism" as a horrible monolithic entity and claiming it needs to be "wiped out") even when reality seems to demand otherwise.

So, as far as articles concerning autism go, "The Girl With A Boy's Brain" certainly could have been worse. It didn't imply that "obviously", nobody could ever be happy as an autistic person, and it did not mention cure, or end on the familiar, nauseating note along the lines of, "As we learn more and more about the brain, we draw ever closer to, hopefully, finding a cure for this devastating condition".

Nevertheless, I did wince here and there as the article described people with AS as "sufferers" and referred to the subject of the article as "inhabiting the magical world of a child" (as if "logic puzzles and whimsical drawings" are somehow the exclusive province of children!).

And the article's ending, while not the stereotypical trumpeting of hope for a cure, was vaguely misleading in the manner that it conveyed Ms. Cowansage's longing to interact in a "connected" manner such as that of the rats she observes in her lab work. Loneliness or desire for companionship is by no means an exclusively autistic phenomenon -- there's plenty of mainstream advice out there, frequently aimed at young students, that indicates that feeling disconnected is very common in humans.

Again, on the positive side, the article did bring to light some of the common but less frequently mentioned realities that many of us on the spectrum experience -- such as detail-oriented perception and cognition, intense and focused interests, and the fact that we can indeed display and feel a range of emotions despite stereotypes to the contrary.

I am also encouraged that the article quoted Ms. Cowansage (at the age of 9) as asking her mother, "Does everyone see, hear, smell, taste, and feel exactly the same thing when they perceive the same object?" This question is one that rings very true for me, considering that I remember wondering whether "red" looked like "red" (the way I saw it) to everyone at around the same age. Theory of Mind, anyone?

But then, the article also describes Ms. Cowansage's ability set as "paradoxical". I am somewhat ambivalent and perhaps slightly leery about the use of the word "paradoxical" here, since it could just as easily be applied to a nonautistic person's ability set.

Why is is paradoxical for someone to be good in science and drawing but poor at keeping up with square dancing and listening comprehension, when it isn't considered paradoxical for someone to be good at holding a two-way conversation but poor at logic puzzles or communicating effectively over e-mail? Paradox is, apparently, in the eye of the beholder, and the beholder is inarguably (though generally not knowingly) biased.

The media still has a very long way to go, apparently, before autistic people are written about in a maximally balanced manner. However, it is at least encouraging that some people are recognizing that no, not all of us on the spectrum are male, and that yes, we understand that other people have minds, and that no, we are not schizoid or sociopathic, and that yes, we are capable of learning, having feelings, and leading happy and productive lives.

But it would be even more encouraging if brains like mine (and Ms. Cowansage's) could be recognized as our own and not the result of some sort of neurological gender-bend -- particularly when gender itself is a concept that is becoming ever more fluid.

As expedient as it might be to define the "different" according to how they deviate from an observed norm, it must be recognized that taking this approach could result in the reality of a "different" person being minimized and assumed less complex than it actually is.

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* Note that this has nothing to do with "identity politics" -- it is just that perpetuating the idea that only people who are biologically male can manifest certain traits and tendencies has the potential to render females manifesting those traits and tendencies to be viewed as "doubly strange" or even invisible, or to be misidentified as having anxiety problems or being deliberately contrary. When a model is too confining to accommodate reality, the model needs adjustment.