Existence is Wonderful Audio - Episode 10 is up and ready for downloading. This episode's topics are:
1. Why the broader disability rights community ought to come out in support of life-extension medicine (short answer: if disability shouldn't be used as a basis for devaluing someone's life, neither should age!)
2. Why not devoting resources to longevity medicine is a form of medical discrimination (short answer: if the purpose of medicine is to save lives, medicine shouldn't limit its sphere of effectiveness only to younger people)
3. Some commentary on the conversation at Responsible Nanotechnology regarding autism, disability, difference, and enhancement that probably spun way beyond anything the author expected! (And I must emphasize here that I did initially misinterpret the argument being made to some extent, though I stand by the validity of my initial response with regard to how it relates to quite a few attitudes I commonly come across, even if those attitudes weren't abundantly present in that particular conversation.)
I highly recommend reading the discussion in response to "Exploring Nano-Ethics", by the way...it doesn't have a whole lot to do with nanotechnology, but it does indirectly since nanotechnology is definitely one of those things which stands to make a person's identity and ability set even more malleable than it is today. Some people find that prospect to be tremendously scary, others find it to be wondrous. I personally think that nanotechnology in general is probably an inevitable development, and that it does have tremendous potential for good (e.g., ending world hunger in a manner such as that described in Neal Stephenson's, The Diamond Age), but that obviously certain safety factors ought to be kept in mind.
The Lifeboat Foundation offers a nice overview of some potential nano-related risks and how they might be mitigated. It's good to know people are thinking about this sort of thing! This is another aspect of what I see as the importance of transhumanism: it's not just about getting all starry-eyed over technology, but about acknowledging the relative closeness of particular technologies to develop and doing our best to think about their ramifications before they are upon us rather than trying to just muddle through as we go.
4. Learning (and helping others to learn) how to manage atypical functioning and perceptual style -- emphasizing functionality over appearance, and how understanding one's own brain better can lead to greater comfort in the world and greater opportunities for learning. I describe a few of my own challenges and how I've learned to deal with them.
5. Science Fiction Theatre! Well, not really. I wrote a story a few years ago (in 2003), before I had much of an idea that anyone was talking about the kinds of subjects I'd always been interested in. It is not autobiographical, though of course there are some elements I can identify with in the protagonist, but the story itself was written for entertainment and not for the sake of transmitting some kind of commentary on human modification. Keeping that in mind, I rather like it, if only because it's one of the few stories I've actually managed to finish. (I used to have ambitions of becoming a professional sci-fi author and I still might attempt writing like that again someday, but as for now it keeps feeling like the real world is a lot more exciting to write about than the various imaginary ones I might come up with!)
Tuesday, March 13, 2007
Monday, March 12, 2007
Yes, Difficulties Are Real...Can We Move On Now?
One common misinterpretation of the arguments I tend to make is the one which states, "Well, by trying to define certain traits and configurations as different but not manifestations of disability, you're hurting people who do actually suffer for their differences and who need help that goes beyond the norm in order to function in everyday life".
First of all, I have never tried to claim that disability doesn't exist. I tend to invoke the social model more frequently than the medical model, but this doesn't mean I am incapable of admitting that yes, some characteristics and configurations limit people's abilities in certain contexts, which makes those characteristics and configurations potentially definable as disabilities. (And I also don't deny the existence of real diseases -- like cancer and pneumonia and heart disease -- that, you know, actually hurt and kill people).
Second of all, it is perfectly valid to consider something both a disability and an advantage, and for different traits to be useful in different contexts. As I explained in the tangent at the end of my previous entry:
Is this aspect of how I see/perceive disabling?
Yes.
Is it also enabling in some respects?
Yes again.
I could say the same for a lot of traits I exhibit, and most likely, so could you about your own traits. Every person probably has a few things they know they like about themselves, a few things that they like some of the time but not all the time, and a few things that they'd just as soon depart without a trace. This is likely to be the case for everyone, regardless of what kinds of modifications they're able to enact upon themselves throughout the course of their life and regardless of the initial conditions they are born with.
As long as such things as individual identities exist (which I hope is indefinitely, since I like being a discrete!), we're going to have to deal with the reality of constraints. Not in the sense that everyone should feel obligated to maintain whatever constraints they were born with -- as a life-extension advocate it would be incoherent for me to suggest this -- but in the sense that whatever characteristics a person exhibits, those characteristics (no matter how much a person appreciates and desires to keep them) are mutually exclusive of other characteristics.
I don't have any problem with acknowledging people's difficulties. I think it's very important to be realistic about how a person actually functions, in order to best enable them to achieve their goals, provide them with services, and determine how they might learn most effectively. However, acknowledging that something is a difficulty does not mean that it needs to be addressed through particular kinds of alteration of the individual (or through making sure that no similar individuals ever exist again).
The central message of disability advocacy that I don't see being fully acknowledged yet by the progressive sphere (whatever that might be) is that people should not be subject to coercion, experimental surgeries, or enforced "normalcy" as a condition of being enabled and allowed to participate in society. None of that message has anything to do with claiming that difficulties don't exist. But it's one thing to say that you want to help someone deal with their difficulties -- and quite another to say that you'd be happy to replace them with someone else if that someone else had a better chance of living what you perceived to be a better life.
I recently read a book entitled, The Speed Of Dark by science fiction author Elizabeth Moon. Prior to reading the book, I'd known it was about a near-future society in which an experimental treatment for autism in adults had been developed, but not much more than that. The first night I started reading the book, I came across the following passages:
and,
Those arguments, even though they are taken from a work of fiction, do sound oddly familiar to me as I run into their variants quite frequently.
I know that a "cure" doesn't exist right now, but if it does someday -- and attitudes haven't changed much by then -- I imagine it would probably be forced on people through the very means being described in The Speed Of Dark. Employers would decide it just wasn't worth providing different kinds of accomodations for different kinds of people when there was some treatment available that would make those people not need those particular accomodations. Anyone who protested would be accused of "whining", "playing the victim", or "having an entitlement complex".
Lest you think I'm being alarmist here, a recent anonymous commenter asserted (in response to On Destigmatizing Difference:
All I can say is that I'm hoping that attitudes like that don't prevail in the long run.
And I do have some basis for this hope, as I've noted the success of various incarnations of civil rights struggles in the past, and I see a similar fervor and dedication in the morphological freedom-fighters of today (a category into which I'd place most disability advocates and most transhumanists, quite easily). So long as social attitudes continue to evolve as technology allows for a greater range of choice in terms of morphology, functionality, appearance, and any number of other personally-defining variables, it should become glaringly obvious that society can become more flexible, and that developing infrastructure to support different kinds of people is a smart investment both socially and economically.
Note: This post edited on 3/13/07 for rantiness and clarity.
First of all, I have never tried to claim that disability doesn't exist. I tend to invoke the social model more frequently than the medical model, but this doesn't mean I am incapable of admitting that yes, some characteristics and configurations limit people's abilities in certain contexts, which makes those characteristics and configurations potentially definable as disabilities. (And I also don't deny the existence of real diseases -- like cancer and pneumonia and heart disease -- that, you know, actually hurt and kill people).
Second of all, it is perfectly valid to consider something both a disability and an advantage, and for different traits to be useful in different contexts. As I explained in the tangent at the end of my previous entry:
One aspect of my brain-wiring is that I tend to see the details of, well, everything by default. Every bit of visual information tends to be fairly equally weighted as far as my brain is concerned.
This is definitely part of the reason I've never had a drivers' license, but it's also a part of the reason why I find so much beauty in the world (and why I can draw accurately and why I have excellent edge-detection skills), and I would never trade it for anything. I'm not trying to self-aggrandize here, but this definitely seemed like a good example of a biological trait that can be a strength or a liability depending upon context -- and an example of something that I would never want to lose, even if losing it might make life logistically easier for me in some ways.
Is this aspect of how I see/perceive disabling?
Yes.
Is it also enabling in some respects?
Yes again.
I could say the same for a lot of traits I exhibit, and most likely, so could you about your own traits. Every person probably has a few things they know they like about themselves, a few things that they like some of the time but not all the time, and a few things that they'd just as soon depart without a trace. This is likely to be the case for everyone, regardless of what kinds of modifications they're able to enact upon themselves throughout the course of their life and regardless of the initial conditions they are born with.
As long as such things as individual identities exist (which I hope is indefinitely, since I like being a discrete!), we're going to have to deal with the reality of constraints. Not in the sense that everyone should feel obligated to maintain whatever constraints they were born with -- as a life-extension advocate it would be incoherent for me to suggest this -- but in the sense that whatever characteristics a person exhibits, those characteristics (no matter how much a person appreciates and desires to keep them) are mutually exclusive of other characteristics.
I don't have any problem with acknowledging people's difficulties. I think it's very important to be realistic about how a person actually functions, in order to best enable them to achieve their goals, provide them with services, and determine how they might learn most effectively. However, acknowledging that something is a difficulty does not mean that it needs to be addressed through particular kinds of alteration of the individual (or through making sure that no similar individuals ever exist again).
The central message of disability advocacy that I don't see being fully acknowledged yet by the progressive sphere (whatever that might be) is that people should not be subject to coercion, experimental surgeries, or enforced "normalcy" as a condition of being enabled and allowed to participate in society. None of that message has anything to do with claiming that difficulties don't exist. But it's one thing to say that you want to help someone deal with their difficulties -- and quite another to say that you'd be happy to replace them with someone else if that someone else had a better chance of living what you perceived to be a better life.
I recently read a book entitled, The Speed Of Dark by science fiction author Elizabeth Moon. Prior to reading the book, I'd known it was about a near-future society in which an experimental treatment for autism in adults had been developed, but not much more than that. The first night I started reading the book, I came across the following passages:
"New treatment?"
"Yeah. I don't know much about it, but I know someone who does, and he knew I was taking over [as in, managing the employment activities of] a bunch of autistics. It's supposed to fix the fundamental deficit, make them normal. If they were normal, they wouldn't have an excuse for those luxuries."
and,
I can't imagine anyone *wanting* to be like that," Crenshaw said. "And if they do, that's a matter for a psych evaluation, I would think. Preferring to be sick --"
"They aren't *sick*," Aldrin said.
"And damaged. Preferring special treatment to a cure. That would have to be some kind of mental imbalance, I believe, seeing as they're doing sensitive work which other entities would love to have."
Those arguments, even though they are taken from a work of fiction, do sound oddly familiar to me as I run into their variants quite frequently.
I know that a "cure" doesn't exist right now, but if it does someday -- and attitudes haven't changed much by then -- I imagine it would probably be forced on people through the very means being described in The Speed Of Dark. Employers would decide it just wasn't worth providing different kinds of accomodations for different kinds of people when there was some treatment available that would make those people not need those particular accomodations. Anyone who protested would be accused of "whining", "playing the victim", or "having an entitlement complex".
Lest you think I'm being alarmist here, a recent anonymous commenter asserted (in response to On Destigmatizing Difference:
...nobody, disabled or not, gets exactly what they want in our society. You have to give as well as take. The disabled generally do more taking than giving, which can't be helped since they are by definition less able to give. However, if / when a disability can be treated, refusal would constitute the most colossal example of mauvaise foi.
All I can say is that I'm hoping that attitudes like that don't prevail in the long run.
And I do have some basis for this hope, as I've noted the success of various incarnations of civil rights struggles in the past, and I see a similar fervor and dedication in the morphological freedom-fighters of today (a category into which I'd place most disability advocates and most transhumanists, quite easily). So long as social attitudes continue to evolve as technology allows for a greater range of choice in terms of morphology, functionality, appearance, and any number of other personally-defining variables, it should become glaringly obvious that society can become more flexible, and that developing infrastructure to support different kinds of people is a smart investment both socially and economically.
Note: This post edited on 3/13/07 for rantiness and clarity.
Friday, March 09, 2007
EIW Audio - Episode 9: Special SENS Edition
Existence is Wonderful Audio - Episode 9 is now up and ready for download. This episode has a fairly monotropic focus on Strategies for Engineered Negligible Senescence, and represents something I've been wanting to do for quite a while.
I like to think of SENS in terms of it being a useful framework to approach aging from an engineering standpoint, as explained in the podcast. It's not a recipe for making people live longer in and of itself, but rather, a good start in terms of viewing age-related health problems as potentially solvable. So, I hope this episode is at least somewhat useful and at least marginally interesting.
Feedback is very much appreciated, since I want to make sure I am talking about these sorts of things in an understandable manner.
In this episode, I briefly outlined the Seven Deadly Things associated with aging. These Seven Deadly Things are:
1. Cell loss, cell atrophy
2. Nuclear mutations and epimutations
3. Mutant mitochondria
4. Death-resistant cells
5. Extracellular crosslinks
6. Extracellular junk
7. Intracellular junk
If you'd like to learn about these Things in greater detail, and hear some actual scientists talking about them, I would like to draw your attention to the audio files linked at the bottom of each page associated with each of the items above. These files are primarily recordings from the 10th Congress of the International Association of Biomedical Gerontology (IABG 10) and SENS 2 conferences held in recent years, and are an excellent supplementary resource for anyone wanting to learn more about biogerontology while they jog or wash the dishes.
IABG 10 talks are listed here and available for download.
SENS 2 talks are listed here and available for download.
I've listened to about 10 of the above talks over the past week, and though the audio quality is somewhat variable, the information is tremendously interesting.
Episode 10 of Existence is Wonderful Audio will be soon forthcoming; I've been working on the scripts for episodes 9 and 10 in parallel, and they've both been rather a long time in the making.
And as a final (and somewhat off-topic) note, just because I think it's really nifty, here are some neat examples of High Dynamic Range Imaging:
A lovely pile of rubbish
Blue and white -- a chair, and a magnificent sky
A shiny colorful indoor area
There are heaps more in the Flickr pool; I haven't tried creating any such photos myself yet, but I would really like to at some point. A large part of the reason I find this sort of imaging appealing is because it very closely approximates the way I see the world all the time. The third photo in particular looks a lot like what I see when I first enter a place like a shopping mall. One aspect of my brain-wiring is that I tend to see the details of, well, everything by default. Every bit of visual information tends to be fairly equally weighted as far as my brain is concerned.
This is definitely part of the reason I've never had a drivers' license, but it's also a part of the reason why I find so much beauty in the world (and why I can draw accurately and why I have excellent edge-detection skills), and I would never trade it for anything. I'm not trying to self-aggrandize here, but this definitely seemed like a good example of a biological trait that can be a strength or a liability depending upon context -- and an example of something that I would never want to lose, even if losing it might make life logistically easier for me in some ways.
I like to think of SENS in terms of it being a useful framework to approach aging from an engineering standpoint, as explained in the podcast. It's not a recipe for making people live longer in and of itself, but rather, a good start in terms of viewing age-related health problems as potentially solvable. So, I hope this episode is at least somewhat useful and at least marginally interesting.
Feedback is very much appreciated, since I want to make sure I am talking about these sorts of things in an understandable manner.
In this episode, I briefly outlined the Seven Deadly Things associated with aging. These Seven Deadly Things are:
1. Cell loss, cell atrophy
2. Nuclear mutations and epimutations
3. Mutant mitochondria
4. Death-resistant cells
5. Extracellular crosslinks
6. Extracellular junk
7. Intracellular junk
If you'd like to learn about these Things in greater detail, and hear some actual scientists talking about them, I would like to draw your attention to the audio files linked at the bottom of each page associated with each of the items above. These files are primarily recordings from the 10th Congress of the International Association of Biomedical Gerontology (IABG 10) and SENS 2 conferences held in recent years, and are an excellent supplementary resource for anyone wanting to learn more about biogerontology while they jog or wash the dishes.
IABG 10 talks are listed here and available for download.
SENS 2 talks are listed here and available for download.
I've listened to about 10 of the above talks over the past week, and though the audio quality is somewhat variable, the information is tremendously interesting.
Episode 10 of Existence is Wonderful Audio will be soon forthcoming; I've been working on the scripts for episodes 9 and 10 in parallel, and they've both been rather a long time in the making.
And as a final (and somewhat off-topic) note, just because I think it's really nifty, here are some neat examples of High Dynamic Range Imaging:
A lovely pile of rubbish
Blue and white -- a chair, and a magnificent sky
A shiny colorful indoor area
There are heaps more in the Flickr pool; I haven't tried creating any such photos myself yet, but I would really like to at some point. A large part of the reason I find this sort of imaging appealing is because it very closely approximates the way I see the world all the time. The third photo in particular looks a lot like what I see when I first enter a place like a shopping mall. One aspect of my brain-wiring is that I tend to see the details of, well, everything by default. Every bit of visual information tends to be fairly equally weighted as far as my brain is concerned.
This is definitely part of the reason I've never had a drivers' license, but it's also a part of the reason why I find so much beauty in the world (and why I can draw accurately and why I have excellent edge-detection skills), and I would never trade it for anything. I'm not trying to self-aggrandize here, but this definitely seemed like a good example of a biological trait that can be a strength or a liability depending upon context -- and an example of something that I would never want to lose, even if losing it might make life logistically easier for me in some ways.
Sunday, March 04, 2007
Your Brain, My Brain, and the Posthuman Rub
"Here's the posthuman rub: We are expanding our control into a vast number of realms that we previously had no choice but to submit to, stoically or otherwise."
- Erik Davis, Take The Red Pill
Interesting times lie ahead for all of us as new technologies (from revolutionary pharmaceuticals to future neuro-modifying nanobots) allow people to alter their internal operating systems at finer and finer levels. We're already facing the first vestiges of the kinds of deep existential questions that go along with this increased level of control, as a result of the proliferation of everything from antidepressants to drugs with the potential to alter learning processes in Down's syndrome.
Neurology is in the news a lot these days, and no wonder: our brains are us and we've got all sorts of vested interests in understanding ourselves, our neighbors, and any children that might happen to come along. Sometime over the past few years (or decades, perhaps, depending on what technologies you're looking at), the brain has somehow managed to drift from being the seat of immutable personal destiny to being something far more, and far more quickly, changeable. But changeable in response to what? And to what extent do a person's "initial conditions" truly affect the choices they end up making, and the metagoals and supergoals held as primary?
Each of must now deal, on practically a daily basis, with new questions of what it means to be who we are (and how self-modification might figure into that process). In addition, people who desire to become parents, or who are already parents, are being faced with new challenges as far as producing and raising members of the next generation goes.
For instance, there's a father blogging on Wired right now, in a series entitled, Hacking My Child's Brain. While I don't have any ethical problems with sensory integration therapy provided with the intention of helping someone learn to gain better awareness of how the sensory landscape affects them (and how to better cope with overwhelming stimuli), I do think it's important to focus on how any such therapy might make the child's life intrinsically better as opposed to how it might "normalize" their responses and reactions to the world and other people.
The father writing this blog says some very reasonable things (he points out how schools sometimes wrongly accuse students with sensory issues of deliberately acting up), but at the same time, he seems to be making some rather odd assumptions regarding how his son experiences the world (e.g., talking about "demanding" eye contact, and equating typical emotional expressions with the actual feeling of a particular emotion, which is not always an accurate pairing -- especially when dealing with someone who is atypically-wired to begin with).
Things are likely to get even more convoluted, ethics-wise, once more dramatic means of brain-alteration emerge, through such tools as nanotechnology. Chris Phoenix, over at Responsible Nanotechnology recently wrote an article entitled Exploring Nano-Ethics. While I agreed with the premise and most of the conclusions in this article (i.e., that people shouldn't need to prove they are "diseased" in some respect in order to have the right to modify themselves in some way), there was one statement that set off my "unexamined bias" flags (emphasis mine):
The fundamental problem here is, as I see it, in seeking to define autism as a deviation from something that should exist by default, rather than a legitimate configuration in its own right. Autism is not a transitory "state", it's more of what I'd analogize to an operating system. Every operating system has its adherents -- some people prefer Windows, some prefer Linux, but that doesn't mean that either operating system is a defective or exaggerated version of the other.
I'm not being a voracious relativist here; I am just pointing out that there is such a thing as a set of mutually exclusive yet equally valid configurations. This, of course, is not the same thing as claiming ALL configurations are valid -- I don't want Alzheimer's or cancer and I don't know anyone else who does, either, but I know of plenty of people who are fine with being autistic and don't feel slighted or sad for having been born that way.
Some people, including some of the commenters who responded to me on the Responsible Nanotechnology article I replied to, seemed fine with the idea that autistic thought processes and cognition could be functional and even beneficial in some contexts. However, both in that discussion and in others I've been involved in at times, there's a kind of sentiment that autistic cognition is best thought of as a tool for accomplishing certain specialized tasks, rather than something people can or should exist within the framework of all the time.
While I understand how a person could come to this way of thinking, based on the current cultural climate, I find the argument that autism is somehow bad if it's "unintentional" to be insulting -- just as, say, a black person might find it insulting to hear that, well, black people are fine, but nobody deserves to be born black because that will restrict their freedom somehow from the get-go (and I know that neurology and skin color aren't really analogous, but attitudes surrounding both certainly are).
It's a subtle kind of prejudice, and one that many people are probably unaware of having until the dominant culture changes to the degree that it is revealed -- try listening to a few old radio programs or reading a few old magazines from the 1950s, and see how women and minorities are talked about. It's likely much of it would sound very racist and sexist by today's standards, but it didn't to most people at the time. I'm certainly not suggesting that we need to try to "preserve" minority groups through the kinds of policies that, say, white-separatist groups would favor -- but rather, that whenever an assumption exists that a given group is inferior for whatever reason, this assumption needs very close examination. And people need to be allowed to perform these examinations, and to question fashionable assumptions, without being accused of overzealous and gratuitous "political correctness".
For example, there seems to be a very pervasive implicit assumption that neurotypicality represents a state of maximum "choice" -- when in fact, this is an illusion. The suggestion that autism should never be "unintentional" is, simultaneously, a statement to the effect of, "Only nonautistic people are qualified to determine whether or not being autistic is okay or not". Which is, of course, a very patronizing statement, not to mention one quite revelatory of the sense of illusion-of-choice that members of any majority tend to exhibit. When there are a lot of people like you around, it's a lot easier to see more of your behaviors and preferences as willful and intentional, and therefore the behaviors of people less like you as evidence of constraint or pathology.
A hypothetical case in point: You're doing something (e.g., watching a soccer match) because you want to, but the autistic person is doing something else (e.g., lining up blocks or drawing detailed and realistic pictures) due to "obsession" or a "savant skill".
I'm not trying to go off on a tangent on "free will" versus determinism (though I consider myself a compatabilist, for the record) but rather, pointing out that when viewing a configuration different from yours as inherently constraining, it is important to look at and try to recognize your own constraints and not let them become invisible to you just because the dominant culture accomodates them so readily.
Some might respond to my arguments here with the statement that, "if we CAN make someone more 'normal', we should, because though there are some positive aspects to certain kinds of differences, differences can also make a person suffer, and it's not fair to make people suffer just so we'll have more diversity in the world."
But what this assumption misses is the fact that each and every person has challenges in life, and that it is really only a false sense of security and desire for certainty that causes a person to shudder less at the idea of typical challenges (finding a prom date, resisting peer pressure to binge-drink at a college party) than at atypical ones (learning to manage hypersensitive hearing, not emitting or easily translating standard body language).
I imagine a transhuman/posthuman culture of tremendous diversity and tremendous accomodation of, and recognition of, different ways of being. Certainly, it is best for people to be able to self-determine to the greatest degree possible -- and I agree that caution is in order when embarking on experimental journeys of self-modification and cognitive engineering -- but I also think that we need to be very wary of bias, and avoid attempting to define a single "best possible baseline state" from which to start these journeys.
- Erik Davis, Take The Red Pill
Interesting times lie ahead for all of us as new technologies (from revolutionary pharmaceuticals to future neuro-modifying nanobots) allow people to alter their internal operating systems at finer and finer levels. We're already facing the first vestiges of the kinds of deep existential questions that go along with this increased level of control, as a result of the proliferation of everything from antidepressants to drugs with the potential to alter learning processes in Down's syndrome.
Neurology is in the news a lot these days, and no wonder: our brains are us and we've got all sorts of vested interests in understanding ourselves, our neighbors, and any children that might happen to come along. Sometime over the past few years (or decades, perhaps, depending on what technologies you're looking at), the brain has somehow managed to drift from being the seat of immutable personal destiny to being something far more, and far more quickly, changeable. But changeable in response to what? And to what extent do a person's "initial conditions" truly affect the choices they end up making, and the metagoals and supergoals held as primary?
Each of must now deal, on practically a daily basis, with new questions of what it means to be who we are (and how self-modification might figure into that process). In addition, people who desire to become parents, or who are already parents, are being faced with new challenges as far as producing and raising members of the next generation goes.
For instance, there's a father blogging on Wired right now, in a series entitled, Hacking My Child's Brain. While I don't have any ethical problems with sensory integration therapy provided with the intention of helping someone learn to gain better awareness of how the sensory landscape affects them (and how to better cope with overwhelming stimuli), I do think it's important to focus on how any such therapy might make the child's life intrinsically better as opposed to how it might "normalize" their responses and reactions to the world and other people.
The father writing this blog says some very reasonable things (he points out how schools sometimes wrongly accuse students with sensory issues of deliberately acting up), but at the same time, he seems to be making some rather odd assumptions regarding how his son experiences the world (e.g., talking about "demanding" eye contact, and equating typical emotional expressions with the actual feeling of a particular emotion, which is not always an accurate pairing -- especially when dealing with someone who is atypically-wired to begin with).
Things are likely to get even more convoluted, ethics-wise, once more dramatic means of brain-alteration emerge, through such tools as nanotechnology. Chris Phoenix, over at Responsible Nanotechnology recently wrote an article entitled Exploring Nano-Ethics. While I agreed with the premise and most of the conclusions in this article (i.e., that people shouldn't need to prove they are "diseased" in some respect in order to have the right to modify themselves in some way), there was one statement that set off my "unexamined bias" flags (emphasis mine):
Incautious or excessive amplification of human traits may lead to situations not dissimilar from drunkenness, mania, or even autism.
The fundamental problem here is, as I see it, in seeking to define autism as a deviation from something that should exist by default, rather than a legitimate configuration in its own right. Autism is not a transitory "state", it's more of what I'd analogize to an operating system. Every operating system has its adherents -- some people prefer Windows, some prefer Linux, but that doesn't mean that either operating system is a defective or exaggerated version of the other.
I'm not being a voracious relativist here; I am just pointing out that there is such a thing as a set of mutually exclusive yet equally valid configurations. This, of course, is not the same thing as claiming ALL configurations are valid -- I don't want Alzheimer's or cancer and I don't know anyone else who does, either, but I know of plenty of people who are fine with being autistic and don't feel slighted or sad for having been born that way.
Some people, including some of the commenters who responded to me on the Responsible Nanotechnology article I replied to, seemed fine with the idea that autistic thought processes and cognition could be functional and even beneficial in some contexts. However, both in that discussion and in others I've been involved in at times, there's a kind of sentiment that autistic cognition is best thought of as a tool for accomplishing certain specialized tasks, rather than something people can or should exist within the framework of all the time.
While I understand how a person could come to this way of thinking, based on the current cultural climate, I find the argument that autism is somehow bad if it's "unintentional" to be insulting -- just as, say, a black person might find it insulting to hear that, well, black people are fine, but nobody deserves to be born black because that will restrict their freedom somehow from the get-go (and I know that neurology and skin color aren't really analogous, but attitudes surrounding both certainly are).
It's a subtle kind of prejudice, and one that many people are probably unaware of having until the dominant culture changes to the degree that it is revealed -- try listening to a few old radio programs or reading a few old magazines from the 1950s, and see how women and minorities are talked about. It's likely much of it would sound very racist and sexist by today's standards, but it didn't to most people at the time. I'm certainly not suggesting that we need to try to "preserve" minority groups through the kinds of policies that, say, white-separatist groups would favor -- but rather, that whenever an assumption exists that a given group is inferior for whatever reason, this assumption needs very close examination. And people need to be allowed to perform these examinations, and to question fashionable assumptions, without being accused of overzealous and gratuitous "political correctness".
For example, there seems to be a very pervasive implicit assumption that neurotypicality represents a state of maximum "choice" -- when in fact, this is an illusion. The suggestion that autism should never be "unintentional" is, simultaneously, a statement to the effect of, "Only nonautistic people are qualified to determine whether or not being autistic is okay or not". Which is, of course, a very patronizing statement, not to mention one quite revelatory of the sense of illusion-of-choice that members of any majority tend to exhibit. When there are a lot of people like you around, it's a lot easier to see more of your behaviors and preferences as willful and intentional, and therefore the behaviors of people less like you as evidence of constraint or pathology.
A hypothetical case in point: You're doing something (e.g., watching a soccer match) because you want to, but the autistic person is doing something else (e.g., lining up blocks or drawing detailed and realistic pictures) due to "obsession" or a "savant skill".
I'm not trying to go off on a tangent on "free will" versus determinism (though I consider myself a compatabilist, for the record) but rather, pointing out that when viewing a configuration different from yours as inherently constraining, it is important to look at and try to recognize your own constraints and not let them become invisible to you just because the dominant culture accomodates them so readily.
Some might respond to my arguments here with the statement that, "if we CAN make someone more 'normal', we should, because though there are some positive aspects to certain kinds of differences, differences can also make a person suffer, and it's not fair to make people suffer just so we'll have more diversity in the world."
But what this assumption misses is the fact that each and every person has challenges in life, and that it is really only a false sense of security and desire for certainty that causes a person to shudder less at the idea of typical challenges (finding a prom date, resisting peer pressure to binge-drink at a college party) than at atypical ones (learning to manage hypersensitive hearing, not emitting or easily translating standard body language).
I imagine a transhuman/posthuman culture of tremendous diversity and tremendous accomodation of, and recognition of, different ways of being. Certainly, it is best for people to be able to self-determine to the greatest degree possible -- and I agree that caution is in order when embarking on experimental journeys of self-modification and cognitive engineering -- but I also think that we need to be very wary of bias, and avoid attempting to define a single "best possible baseline state" from which to start these journeys.
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