Why is is that non-typical things (and people) are held to an extremely high standard of self-justification, whereas more typical things (and people) get to have their existence taken at face value?
I came across a comment today (I don't remember the exact site) in which someone was making the claim that even if an autistic person was happy and okay with being autistic, we (there's that lovely non-inclusive "we" again) still have an obligation to prevent future people from being autistic. The reason? Because there's apparently "no reason for autism/Asperger's to exist."
(and no, this person didn't even bother claiming that he was only talking about people with "severe difficulties" -- he was including everyone who might presumably fall under the "autistic spectrum" umbrella, as far as I could tell.)
My first response to this (internally) was, "Wha?!"
See, as far as I know, there's no "reason" outside conscious awareness for anything to exist in the first place...stuff just sort of exists, and different people find meaning and value in different parts of existence. Maybe it's my vaguely existential tendencies talking here (if so, it's all Joss Whedon's fault!), but I think it's perfectly valid for people to decide for themselves that their existence -- however they might happen to be configured -- has value for its own sake.
Which means that autistic people (regardless of what their "label" happens to be, if they have one) have just as much right as anyone else to assert that there's nothing wrong with the fact of their existence, or the existence of similar others. The idea that any deviation from the norm needs to provide extra justification points for its existence is just plain silly. Real life is not some kind of assembly line, and people are not interchangeable parts.
There is no set of figures or statistics that can possibly provide an "objective" guide to configuring humans on some grand scale of promised "improvement". Either you decide that people are valuable for their own sakes and keep that in mind when making decisions from that point on, or you decide to play the "leaky lifeboat" game of looking at all of humanity with the goal of deciding who it is okay to throw overboard.
To me, it seems obvious that the former position is more ethically sound, but it sometimes seems to be very hard to justify it in ways that others can readily understand.
(Obviously this isn't some kind of hard-and-fast guide, and I am not suggesting everyone go home and snuggle with a serial killer because "everyone just needs to be loved". Rather, I am talking about a general weighting of attitudes, in which a person cultivates a default position of presuming value and seeing where that presumption takes them.
My guess is that if more people did this, there would be a lot less in the way of "writing people off" and/or assuming that because you can't understand how someone else could be happy, their own assertions to that effect can't be taken as anything more than signs of ignorance or "resignation to a lesser life").
Friday, June 27, 2008
On Putting One's Eye on the Ball
Gym class was, more often than not, an utter nightmare for me during my school years. There were a few activities I liked and even excelled in (obstacle courses, jumping rope, the flexed arm hang test), but we never seemed to spend much time on those activities. For the most part, PE time meant chaotic, ragtag versions of team sports.
I was horrible at sports. Really horrible. I found the "team dynamic" incomprehensible to begin with, to the point where I often had to be reminded which team I was on. I generally had no clue what I was actually supposed to be doing at any given time. Team sports in particular seem to require a type of attentional breadth and vigilance I can't reliably access, and that seems to make other kinds of (necessary) cognition fizzle out from overload very quickly (which is part of the reason I hated both gym class and mandatory recess kickball growing up -- they didn't relax me or help me concentrate on studies afterward, they just left me confused and frazzled and more prone to melting down).
Plus, everything seemed far too fast-moving and unpredictable for me to possibly keep up with.* The mechanics of throwing, kicking, catching and hitting projectiles flying or rolling in my direction also pretty much eluded me throughout my entire elementary and secondary education. My motor planning was so bad that I couldn't even catch a softball in a glove when the teacher rolled it to me across the ground from a few feet away.
My memories of participation (if you can call it that) in ball-based games consist mainly of whirling confusion, garbled voices echoing through gymnasiums, getting hit in the head by balls I didn't see coming, jeers from classmates, nasty-smelling mesh shirts, getting picked last for teams, not getting picked at all and having to be "assigned" by the teacher (to a chorus of groans on the part of those who ended up "stuck" with me), and wandering in day-dreamy circles in the distant outfield.
As a grownup, I am still not so much into sports; I find watching them to be mind-numbingly boring, and I have no desire whatsoever to go out and join the local softball league. Nevertheless, it does seem that some skills have come online that I'd never in a million years have been able to predict the appearance of.
For years I thought I was totally hopeless at hitting a ball with a bat -- I don't recall ever actually hitting the ball (beyond the occasional accidental "bunt" or foul) during any childhood bat-oriented game session. This didn't bother me in particular, as I had no ambitions to become a pro athlete, but at the same time, I remained mystified at how anyone could possibly manage to use a stick to hit something flying through the air at them.
Recently, though, I somehow found myself in an impromptu backyard bat-and-ball session in which me, my SO, and his little niece and nephew were taking turns throwing a ball so one of the others could swing at it. I hadn't attempted to hit a ball with a bat for probably at least thirteen years prior to this session, and I had no expectations whatsoever of actually hitting when it came my turn to try.
Nevertheless, I hit it. Matt threw it again. I hit it again. I kept hitting it. I was shocked! Somehow, something about the relationships between bat and ball and timing and movement had managed to coalesce in my brain over many years of doing absolutely nothing to improve my hitting prowess.
In a flash, I also found that I understood what it meant to "keep one's eye on the ball" -- I'd heard that directive many times in my youth, but it had always sounded amusingly grotesque or obvious (in the "of course my eye is on the ball, but that doesn't tell me how to hit it with the bat!" sense) rather than actually descriptive of anything that would help me hit. Now, I could grok that keeping my eye on the ball actually had something to do with keeping track of where the ball was in relation to the bat, a concept which simply hadn't connected before.
Matt hadn't ever seen me try to hit a ball before, so he had a hard time figuring out what I was making such a big deal over, and he commented that he was giving me "easy" pitches. And I don't doubt that in the grand scheme of things, they were easy pitches -- even I could tell they weren't exactly fastballs, and I was using a kid-sized foam-covered bat -- but that didn't matter. Previously I'd not been able to hit any pitches!
Again, I'm not planning on going out for any teams. But I did want to write about my experience with apparent spontaneous batting ability, as it never ceases to amaze me how nonlinear skill acquisition can be at times!
* Minor exceptions to this were badminton -- which utilized a somewhat slower-moving projectile -- and indoor hockey, which allowed me to pretty much ignore the humans and concentrate on where the puck was. Somewhat amusingly, hockey is the only activity that managed to get me sidelined several times for "violence", as apparently I was pretty possessive of the puck when I had it, and not above thwacking people with my stick!
I was horrible at sports. Really horrible. I found the "team dynamic" incomprehensible to begin with, to the point where I often had to be reminded which team I was on. I generally had no clue what I was actually supposed to be doing at any given time. Team sports in particular seem to require a type of attentional breadth and vigilance I can't reliably access, and that seems to make other kinds of (necessary) cognition fizzle out from overload very quickly (which is part of the reason I hated both gym class and mandatory recess kickball growing up -- they didn't relax me or help me concentrate on studies afterward, they just left me confused and frazzled and more prone to melting down).
Plus, everything seemed far too fast-moving and unpredictable for me to possibly keep up with.* The mechanics of throwing, kicking, catching and hitting projectiles flying or rolling in my direction also pretty much eluded me throughout my entire elementary and secondary education. My motor planning was so bad that I couldn't even catch a softball in a glove when the teacher rolled it to me across the ground from a few feet away.
My memories of participation (if you can call it that) in ball-based games consist mainly of whirling confusion, garbled voices echoing through gymnasiums, getting hit in the head by balls I didn't see coming, jeers from classmates, nasty-smelling mesh shirts, getting picked last for teams, not getting picked at all and having to be "assigned" by the teacher (to a chorus of groans on the part of those who ended up "stuck" with me), and wandering in day-dreamy circles in the distant outfield.
As a grownup, I am still not so much into sports; I find watching them to be mind-numbingly boring, and I have no desire whatsoever to go out and join the local softball league. Nevertheless, it does seem that some skills have come online that I'd never in a million years have been able to predict the appearance of.
For years I thought I was totally hopeless at hitting a ball with a bat -- I don't recall ever actually hitting the ball (beyond the occasional accidental "bunt" or foul) during any childhood bat-oriented game session. This didn't bother me in particular, as I had no ambitions to become a pro athlete, but at the same time, I remained mystified at how anyone could possibly manage to use a stick to hit something flying through the air at them.
Recently, though, I somehow found myself in an impromptu backyard bat-and-ball session in which me, my SO, and his little niece and nephew were taking turns throwing a ball so one of the others could swing at it. I hadn't attempted to hit a ball with a bat for probably at least thirteen years prior to this session, and I had no expectations whatsoever of actually hitting when it came my turn to try.
Nevertheless, I hit it. Matt threw it again. I hit it again. I kept hitting it. I was shocked! Somehow, something about the relationships between bat and ball and timing and movement had managed to coalesce in my brain over many years of doing absolutely nothing to improve my hitting prowess.
In a flash, I also found that I understood what it meant to "keep one's eye on the ball" -- I'd heard that directive many times in my youth, but it had always sounded amusingly grotesque or obvious (in the "of course my eye is on the ball, but that doesn't tell me how to hit it with the bat!" sense) rather than actually descriptive of anything that would help me hit. Now, I could grok that keeping my eye on the ball actually had something to do with keeping track of where the ball was in relation to the bat, a concept which simply hadn't connected before.
Matt hadn't ever seen me try to hit a ball before, so he had a hard time figuring out what I was making such a big deal over, and he commented that he was giving me "easy" pitches. And I don't doubt that in the grand scheme of things, they were easy pitches -- even I could tell they weren't exactly fastballs, and I was using a kid-sized foam-covered bat -- but that didn't matter. Previously I'd not been able to hit any pitches!
Again, I'm not planning on going out for any teams. But I did want to write about my experience with apparent spontaneous batting ability, as it never ceases to amaze me how nonlinear skill acquisition can be at times!
* Minor exceptions to this were badminton -- which utilized a somewhat slower-moving projectile -- and indoor hockey, which allowed me to pretty much ignore the humans and concentrate on where the puck was. Somewhat amusingly, hockey is the only activity that managed to get me sidelined several times for "violence", as apparently I was pretty possessive of the puck when I had it, and not above thwacking people with my stick!
Thursday, June 26, 2008
Wired Meets Methuselah
This is pretty cool - a profile of the Methuselah Foundation has made it into "Wired". I particularly appreciate this part:
Hooray for head-turning lab results!
The Methuselah Foundation now has an annual research funding budget of several million dollars, de Grey says, and it's beginning to show lab results that he thinks will turn scientists' heads.
What's more, other researchers have also found some success pursuing similarly structured research programs. For example, late last year, the Buck Institute for Age Research received $25 million from the National Institutes of Health to establish a home for the "new scientific discipline of geroscience." The new field, and its research institute, are dedicated to proactively fighting aging with researchers from a dizzying array of fields.
Hooray for head-turning lab results!
Wednesday, June 25, 2008
Help, Accommodation, and Non-Standard Needs
One of my regular volunteer activities includes mailing books to Methuselah Foundation donors. I don't mind this task at all, though the transaction e-mails (I get the receipts in my inbox every day) can certainly pile up over time -- it's pretty straightforward, which makes it a sustainable activity given that my day job takes up the vast majority of my waking hours during the week.
But this post isn't about volunteer activities, per se -- that's just background. What I'm really here to write about today is the concept of assistance -- specifically in light of social perceptions regarding what kinds of help it is and isn't okay to need (or refuse, for that matter).
Since I get alternate Fridays off work, these Fridays present an opportune time for me to print address labels and mail out books. There's a mailing centre in a small strip mall about a quarter mile from my apartment, and I usually go there to send things off. Perfectly reasonable, right?
Well, I certainly think so, and so far nobody has tried to stop me from doing this, but I have run into some rather odd responses and attitudes in the course of this ongoing mailing activity. If I have a lot of books to send (more than 15 or so), I will wait until a Saturday or a convenient evening when my partner can provide car services (and nobody ever bats an eye at that; it's perfectly reasonable, I guess, to commandeer the trunk of a car and another person's arms for transporting books) -- but if I only have a few and decide to transport them on foot, things are very different.
For some reason, people seem to think it tremendously odd when I walk to the postal centre carrying the books, usually in two reusable shopping bags (one in each hand). I can carry up to around 15 books this way, and the way I see it, it's a win-win situation: I get a nice dose of much-needed exercise, and the books get mailed.
And yet, quite often when I'm walking down the street, I get people yelling out their car windows, honking their horns, and (if they are pedestrians) running up to me and asking if they can help. I'm not totally certain that the yelling and honking are directly correlated with my carrying the bags of books, as people have been yelling at me out car windows for practically as long as I can recall for some reason, but it definitely seems to happen more when I'm carrying stuff.
As for the pedestrians who offer to help, what amazes me about that is how hard it can be to fend them off at times! It's not enough to say, "No thanks, I'm fine", apparently -- this kind of response will more usually garner me an "Are you sure?" than a respectful retreat.
The mailing centre employees sometimes express concern as well -- I think they've gotten used to me at this point, but initially I had to reassure them that no, I wasn't being "abandoned" to carry the books unaided. I have been encouraged in no uncertain terms to solicit rides and pretty much insist on being helped, to the point where it's clear to me that it must be quite socially acceptable to get assistance carrying objects (perhaps especially if you happen to be 100 lbs and female). Not only is it not considered sad or tragic that I can't carry 30 books at once -- I apparently wouldn't be considered "burdensome" if I were to essentially demand help with carrying 15 books, even though I can easily manage 15 books on my own!
This sort of thing happens to me at work as well.
In my job as an electromagnetics engineer, I deal with a lot of weird-looking hardware, some of which is heavy, and some of which isn't. I've also been carting around a lot of empty boxes and piles of packing material lately, as we've been getting some nifty new items in. Anyhow, as a result of all this carrying-to-and-fro of Stuff, I've noted some interesting phenomena. Thankfully, there aren't any automobiles zipping through the building filled with occupants who like to yell out windows, but I still get a lot of people trying very hard to help me.
And...well, while I quite like having help when I'm trying to get a 90-pound amplifier onto a shelf, I am not so much about having people randomly hold doors open for me or try to grab light and easy-to-carry items out of my hand when I'm perfectly fine carrying them unaided. No, I'm not on some "macho woman" trip -- this has nothing to do with gender, at least on my end -- it's just that if I am in the process of trying to push a cart or open a door or even carry an empty box down the hallway, adding "human interaction" to the task tends to turn it from something perfectly manageable into something ridiculously confusing.
Seriously -- if I am carrying something or trying to open a door, and you rush over and either try to take the thing from me or manipulate the door yourself, you are likely to see me either dart away like a spooked squirrel, wave my arms, squeal, start repeating some phrase over and over again (usually something like "Get back! Get back! Just get back!"), or responding in any other number of (most likely) unexpected and odd-seeming ways. I do not react this way "on purpose", nor do I mean to be or seem rude -- it's just that I have a very sharp breakpoint in my response curve as far as navigating multiple environmental/perceptual variables goes.
Anyone who is around me long enough will probably see me react as described above at some point. I don't lash out and attack people physically or anything (my reactions tend far more toward "flight" or "freeze" than toward "fight"), but apparently I do manage to alarm, scare, or even offend people at times with my reactions to certain situations. I've gotten better at dealing with this, and at avoiding it in the first place over the years (particularly since finding out I was on the autistic spectrum), but it still happens from time to time.
Anyway, though, the thing that made me want to write this post was the realization that there seem to be:
- Certain kinds of help that are okay to ask for
- Certain kinds of help that people seem to think others are obligated to seek or accept
- Certain kinds of help that are almost impossible to explain the need for
- Certain kinds of help that don't seem like they require much (if anything) in the way of money or materials, but that people aren't supposed to ask for or need.
As far as I can tell, nobody thinks it's bad or weird for me to ask for help carrying heavy objects. In fact, if anyone so much as sees me trying to pick anything up or carry something, they are apt to not only offer help, but practically insist on giving it, even if I try my very best to make it clear that (a) I don't need it, and (b) they're making things more difficult for me by continuing to push it on me.
This also happens in other circumstances -- e.g., once I was in a software training class, and for some reason the instructor decided to single me out as needing "special instruction", so he stood behind me and kept pointing at things on the screen and telling me out loud what to do. I found this incredibly annoying, as I'd been doing fine on my own (I'm quite good at figuring out software interfaces) and he was distracting me with his pointing and commentary -- and I ended up having to tell him multiple times to go away and leave me alone before he actually did. I didn't need or want his help, and there were a zillion other things he could have been doing rather than micromanaging the contents of my screen, and yet, he didn't exactly rejoice at being freed from the "burden" of helping me.
On the other hand, often when I try to explain things that actually would help me (e.g., "If I'm opening a door, please don't run up and try to open it for me, because you will end up messing with my visual perception and motor planning"), people either tend to not believe me, not understand what I'm asking, or act as if I must be trying to impress them with my self-reliance or physical door-opening (or object-carrying) prowess. Which I'm not. Sometimes, quite frankly, the best way to help me is to avoid helping me, but this is extremely difficult to communicate to others.
And then there's the matter of "accommodations". I was authorized to receive some accommodations in school through the Disabled Student Services department, such as extra time on tests in college, and the opportunity to take tests in a quiet, less crowded room. When I was actually able to wrangle the logistics, I definitely did better on my tests (I still don't think I'd have been able to graduate without the accommodations I did have), but sometimes the teachers I asked to sign my test authorization forms reacted so negatively that I just didn't have it in me to push the issue. Some of them said things like, "It's too inconvenient for me to have you take your test outside the regular class period" -- and not having any real self-advocacy skills at that time in my life, I tended to just back down upon hearing that, figuring that I had "no right to special treatment" or even supposedly "reasonable accommodations" if they were truly that much of a hardship for my teachers.
If I were in school now, I'd be a lot more assertive. I used to feel as if I had to be "totally self-sufficient" otherwise I didn't even deserve to exist, and this led to a lot of really nasty periods of utter self-loathing, guilt, and "pushing" to the point of putting my health in danger (at one point in college I took a urine test and was told that I was "digesting my muscles and internal organs" due to not eating enough). I don't feel that way now, and in many ways I am a lot more "self-sufficient" than I used to be -- go figure.
I've had so many experiences of being offered help (help that clearly involved people "going out of their way") that I didn't need that anyone who tries to tell me that accommodations are a resource problem (and that people who don't want their differences "cured" are somehow selfish or lazy or worse) immediately goes on my "this person is lacking in clue" list. So often, when I see or hear of people complaining about having to accommodate someone else's non-standard need, it strikes me as a complaint about having to shift or disrupt the status quo rather than a rational complaint about a true and unfair hardship.
I really wish people would at least consider this before making knee-jerk arguments about nonstandard people being "resource drains".
Humans help each other. That's what we do as a (hopefully) civilized species -- we're supposed to have risen above all those harsh, ruthless "laws of the jungle" at this point! And sure, sometimes this is how things end up working out, as cooperation clearly exists -- but I still think a caveat is warranted regarding assuming you can just offer the same kinds of help to everyone and have it actually be useful to them.
Bottom line: Help shouldn't be about getting someone's gratitude or feeling like you've fulfilled your token obligation -- it should be about actually, you know, helping someone. Personally, I like it when people let me know when my actions aren't actually helping them -- I'd much rather them be honest than pretend to appreciate something they don't. And the fact that some people need different kinds of help than others doesn't mean that they are somehow objectively "diseased" -- it just means that the definition of what meaningful help is needs to become more flexible in order to create a more welcoming society for all.
But this post isn't about volunteer activities, per se -- that's just background. What I'm really here to write about today is the concept of assistance -- specifically in light of social perceptions regarding what kinds of help it is and isn't okay to need (or refuse, for that matter).
Since I get alternate Fridays off work, these Fridays present an opportune time for me to print address labels and mail out books. There's a mailing centre in a small strip mall about a quarter mile from my apartment, and I usually go there to send things off. Perfectly reasonable, right?
Well, I certainly think so, and so far nobody has tried to stop me from doing this, but I have run into some rather odd responses and attitudes in the course of this ongoing mailing activity. If I have a lot of books to send (more than 15 or so), I will wait until a Saturday or a convenient evening when my partner can provide car services (and nobody ever bats an eye at that; it's perfectly reasonable, I guess, to commandeer the trunk of a car and another person's arms for transporting books) -- but if I only have a few and decide to transport them on foot, things are very different.
For some reason, people seem to think it tremendously odd when I walk to the postal centre carrying the books, usually in two reusable shopping bags (one in each hand). I can carry up to around 15 books this way, and the way I see it, it's a win-win situation: I get a nice dose of much-needed exercise, and the books get mailed.
And yet, quite often when I'm walking down the street, I get people yelling out their car windows, honking their horns, and (if they are pedestrians) running up to me and asking if they can help. I'm not totally certain that the yelling and honking are directly correlated with my carrying the bags of books, as people have been yelling at me out car windows for practically as long as I can recall for some reason, but it definitely seems to happen more when I'm carrying stuff.
As for the pedestrians who offer to help, what amazes me about that is how hard it can be to fend them off at times! It's not enough to say, "No thanks, I'm fine", apparently -- this kind of response will more usually garner me an "Are you sure?" than a respectful retreat.
The mailing centre employees sometimes express concern as well -- I think they've gotten used to me at this point, but initially I had to reassure them that no, I wasn't being "abandoned" to carry the books unaided. I have been encouraged in no uncertain terms to solicit rides and pretty much insist on being helped, to the point where it's clear to me that it must be quite socially acceptable to get assistance carrying objects (perhaps especially if you happen to be 100 lbs and female). Not only is it not considered sad or tragic that I can't carry 30 books at once -- I apparently wouldn't be considered "burdensome" if I were to essentially demand help with carrying 15 books, even though I can easily manage 15 books on my own!
This sort of thing happens to me at work as well.
In my job as an electromagnetics engineer, I deal with a lot of weird-looking hardware, some of which is heavy, and some of which isn't. I've also been carting around a lot of empty boxes and piles of packing material lately, as we've been getting some nifty new items in. Anyhow, as a result of all this carrying-to-and-fro of Stuff, I've noted some interesting phenomena. Thankfully, there aren't any automobiles zipping through the building filled with occupants who like to yell out windows, but I still get a lot of people trying very hard to help me.
And...well, while I quite like having help when I'm trying to get a 90-pound amplifier onto a shelf, I am not so much about having people randomly hold doors open for me or try to grab light and easy-to-carry items out of my hand when I'm perfectly fine carrying them unaided. No, I'm not on some "macho woman" trip -- this has nothing to do with gender, at least on my end -- it's just that if I am in the process of trying to push a cart or open a door or even carry an empty box down the hallway, adding "human interaction" to the task tends to turn it from something perfectly manageable into something ridiculously confusing.
Seriously -- if I am carrying something or trying to open a door, and you rush over and either try to take the thing from me or manipulate the door yourself, you are likely to see me either dart away like a spooked squirrel, wave my arms, squeal, start repeating some phrase over and over again (usually something like "Get back! Get back! Just get back!"), or responding in any other number of (most likely) unexpected and odd-seeming ways. I do not react this way "on purpose", nor do I mean to be or seem rude -- it's just that I have a very sharp breakpoint in my response curve as far as navigating multiple environmental/perceptual variables goes.
Anyone who is around me long enough will probably see me react as described above at some point. I don't lash out and attack people physically or anything (my reactions tend far more toward "flight" or "freeze" than toward "fight"), but apparently I do manage to alarm, scare, or even offend people at times with my reactions to certain situations. I've gotten better at dealing with this, and at avoiding it in the first place over the years (particularly since finding out I was on the autistic spectrum), but it still happens from time to time.
Anyway, though, the thing that made me want to write this post was the realization that there seem to be:
- Certain kinds of help that are okay to ask for
- Certain kinds of help that people seem to think others are obligated to seek or accept
- Certain kinds of help that are almost impossible to explain the need for
- Certain kinds of help that don't seem like they require much (if anything) in the way of money or materials, but that people aren't supposed to ask for or need.
As far as I can tell, nobody thinks it's bad or weird for me to ask for help carrying heavy objects. In fact, if anyone so much as sees me trying to pick anything up or carry something, they are apt to not only offer help, but practically insist on giving it, even if I try my very best to make it clear that (a) I don't need it, and (b) they're making things more difficult for me by continuing to push it on me.
This also happens in other circumstances -- e.g., once I was in a software training class, and for some reason the instructor decided to single me out as needing "special instruction", so he stood behind me and kept pointing at things on the screen and telling me out loud what to do. I found this incredibly annoying, as I'd been doing fine on my own (I'm quite good at figuring out software interfaces) and he was distracting me with his pointing and commentary -- and I ended up having to tell him multiple times to go away and leave me alone before he actually did. I didn't need or want his help, and there were a zillion other things he could have been doing rather than micromanaging the contents of my screen, and yet, he didn't exactly rejoice at being freed from the "burden" of helping me.
On the other hand, often when I try to explain things that actually would help me (e.g., "If I'm opening a door, please don't run up and try to open it for me, because you will end up messing with my visual perception and motor planning"), people either tend to not believe me, not understand what I'm asking, or act as if I must be trying to impress them with my self-reliance or physical door-opening (or object-carrying) prowess. Which I'm not. Sometimes, quite frankly, the best way to help me is to avoid helping me, but this is extremely difficult to communicate to others.
And then there's the matter of "accommodations". I was authorized to receive some accommodations in school through the Disabled Student Services department, such as extra time on tests in college, and the opportunity to take tests in a quiet, less crowded room. When I was actually able to wrangle the logistics, I definitely did better on my tests (I still don't think I'd have been able to graduate without the accommodations I did have), but sometimes the teachers I asked to sign my test authorization forms reacted so negatively that I just didn't have it in me to push the issue. Some of them said things like, "It's too inconvenient for me to have you take your test outside the regular class period" -- and not having any real self-advocacy skills at that time in my life, I tended to just back down upon hearing that, figuring that I had "no right to special treatment" or even supposedly "reasonable accommodations" if they were truly that much of a hardship for my teachers.
If I were in school now, I'd be a lot more assertive. I used to feel as if I had to be "totally self-sufficient" otherwise I didn't even deserve to exist, and this led to a lot of really nasty periods of utter self-loathing, guilt, and "pushing" to the point of putting my health in danger (at one point in college I took a urine test and was told that I was "digesting my muscles and internal organs" due to not eating enough). I don't feel that way now, and in many ways I am a lot more "self-sufficient" than I used to be -- go figure.
I've had so many experiences of being offered help (help that clearly involved people "going out of their way") that I didn't need that anyone who tries to tell me that accommodations are a resource problem (and that people who don't want their differences "cured" are somehow selfish or lazy or worse) immediately goes on my "this person is lacking in clue" list. So often, when I see or hear of people complaining about having to accommodate someone else's non-standard need, it strikes me as a complaint about having to shift or disrupt the status quo rather than a rational complaint about a true and unfair hardship.
I really wish people would at least consider this before making knee-jerk arguments about nonstandard people being "resource drains".
Humans help each other. That's what we do as a (hopefully) civilized species -- we're supposed to have risen above all those harsh, ruthless "laws of the jungle" at this point! And sure, sometimes this is how things end up working out, as cooperation clearly exists -- but I still think a caveat is warranted regarding assuming you can just offer the same kinds of help to everyone and have it actually be useful to them.
Bottom line: Help shouldn't be about getting someone's gratitude or feeling like you've fulfilled your token obligation -- it should be about actually, you know, helping someone. Personally, I like it when people let me know when my actions aren't actually helping them -- I'd much rather them be honest than pretend to appreciate something they don't. And the fact that some people need different kinds of help than others doesn't mean that they are somehow objectively "diseased" -- it just means that the definition of what meaningful help is needs to become more flexible in order to create a more welcoming society for all.
Tuesday, June 24, 2008
Links I Have Liked Of Late
I'm working on several posts in the background (which is pretty much an ongoing thing for me), but I've been reading some things lately I figured were worth pointing people to. Enjoy, and be informed!
Longevity Links
1.) A good example of properly-applied critical thinking in longevity science can be found at Ouroboros - Research in the Biology of Aging in an entry entitled Sirtuins come under fire:
2.) Bill Thomas at Changing Aging reports on a bizarre case of someone being declared 'too old' to serve as an expert on aging:
How weird, indeed! I've always figured that while people should certainly be allowed (and enabled) to retire, there's really no sense in forcing them to! My guess is that as more people start living longer and feeling better in their later years, we're going to be looking at a pretty massive shift in how the concept of "retirement" is viewed and put into practice. If someone is doing work they love and excel at, why the heck would you kick them out?
3.) The British organization Help the Aged seeks to:
I don't personally live in the UK, but I still thought this site/group was worth mentioning -- I particularly like their emphasis on ensuring that older people's voices are heard, and on helping address issues like poverty, which are every bit as important as the stuff that goes on in laboratories.
Autistic Advocacy Links
1.) An older but excellent post from Bev at Asperger Square 8 entitled For Parents makes some great points about the purpose and benefits of autistic self-advocacy for all persons on the spectrum. I wholeheartedly agree with her, and I'm glad I came across this post today, as it tidily expresses a number of things that I think really need to be expressed (such as the following):
2.) A recent post entitled My-Blindness (a bit of a play on "mind-blindness", but with a refreshing twist) by Susan Senator, author, bellydancer, and mother of three. Her eldest is 18 years old and autistic. She writes:
3.) Amanda Baggs covers the (ridiculous) case ofmegacharity "Autism Speaks" censorship of an autistic blogger's T-shirt design on Zazzle.com.*** Several people have written about this incident, but I wanted to quote Amanda's piece because of how she put a particular, important point (emphasis mine):
*** EDIT 6/27/08: Turns out that it wasn't actually "Autism Speaks" prompting the censorship this time -- the t-shirt maker explains here that the whole mess seems to have been the result of a Zazzle employee's butt-covering efforts. Apparently there was a bit of a mix-up over copyright laws and the interpretations thereof, but things have been settled now and the disputed shirts are still available.
(Thanks to Cody at Normal Is Overrated for the heads-up.)
And bear in mind that none of this negates the observation of Amanda's that I quoted above, regarding the apparent lack of math and logic skills rampant in some advocacy organizations -- it is still true that some people are claiming that any autistic person capable of self-advocacy shouldn't have a say in the representation or treatment of autistics, even though plenty of people fully capable of writing and communicating in other ways are part of the "1 in 150" statistic so often employed in the scaremongering process.
Gratuitous Cuteness!
And finally, a cute kitten video I took this weekend - this kitten, named Toby, is currently rooming with Matt's parents, who live nearby. Cute kittens are definitely one of those things that, in my humble opinion, make existence wonderful. =^_^=
Longevity Links
1.) A good example of properly-applied critical thinking in longevity science can be found at Ouroboros - Research in the Biology of Aging in an entry entitled Sirtuins come under fire:
Over the past few years, sirtuins have generated great excitement — both in the basic study of biogerontology and (more recently) in the private sector. In just over a decade, the field has moved from its founding observations in yeast to wide-ranging results in mammals. Among the adherents of a widely held theory, it is believed that sirtuins act to extend lifespan via similar mechanisms to calorie restriction (CR), and that small-molecule activators of sirtuins (such as resveratrol) are CR mimetics — therefore, the sirtuins are the first molecular target to guide drug design in a bona fide anti-aging pharmacopoeia.
As theories reach maturity (and middle age), they are naturally subject to challenge, and the sirtuin story is no exception. The role of sirtuins in CR has been challenged, sometimes by the very founders of the field. The mechanism(s) of action of resveratrol are also under close scrutiny. Even some of the most famous studies of sirtuins — specifically, regarding effects on median lifespan and exercise tolerance — used animals eating such horrifyingly fatty diets or ingesting such gigantic doses of resveratrol that their relevance to humans must be questioned.
2.) Bill Thomas at Changing Aging reports on a bizarre case of someone being declared 'too old' to serve as an expert on aging:
Professor Gloria Gutman has the kind of credentials that should guarantee a long, fruitful stay at the peak of her profession. She developed and directs the highly regarded Gerontology Research Centre at Simon Fraser University in Vancouver. She's written or edited 20 books and more than 100 scholarly articles on such issues as housing for the elderly, dementia and long-term care. Her work is recognized beyond Canada's borders -- she's president of the International Association of Gerontology, representing organizations in 63 countries.
But last summer she faced a problem. On July 17 she turned 65. At Simon Fraser, as at many institutions and workplaces across Canada, that's the age of mandatory retirement. Happy birthday! Here's your watch, there's the door. One day you're 64, an internationally respected member of the faculty. The next, you're too old to be employed as an expert on aging.
How weird!
How weird, indeed! I've always figured that while people should certainly be allowed (and enabled) to retire, there's really no sense in forcing them to! My guess is that as more people start living longer and feeling better in their later years, we're going to be looking at a pretty massive shift in how the concept of "retirement" is viewed and put into practice. If someone is doing work they love and excel at, why the heck would you kick them out?
3.) The British organization Help the Aged seeks to:
...free disadvantaged older people in the UK and overseas from poverty, isolation and neglect. Understanding the needs of older people is fundamental to this work and we are committed to supporting and promoting high-quality research.
Research is central to the Charity's mission of securing and upholding the rights of disadvantaged older people in the UK and around the world. We fund vital research on ageing, we influence its direction via the academic and research community, and we promote the effective dissemination of research findings that will have the greatest impact on policy and practice.
Our policy research drives our campaigns and ensures that older people's voices are heard. And through our special trust, Research into Ageing, we currently fund some of the best and most needed biomedical research, which will improve our understanding of health in later life.
I don't personally live in the UK, but I still thought this site/group was worth mentioning -- I particularly like their emphasis on ensuring that older people's voices are heard, and on helping address issues like poverty, which are every bit as important as the stuff that goes on in laboratories.
Autistic Advocacy Links
1.) An older but excellent post from Bev at Asperger Square 8 entitled For Parents makes some great points about the purpose and benefits of autistic self-advocacy for all persons on the spectrum. I wholeheartedly agree with her, and I'm glad I came across this post today, as it tidily expresses a number of things that I think really need to be expressed (such as the following):
If your child is autistic and you want a better life for him or her, I am not your enemy. I want a better life for all autistic people. However they communicate, however well or poorly they score on standardized tests. Whether or not they have medical problems in addition to neurological differences, whether the diagnosis is autism, Asperger syndrome, PDD-NOS or something else altogether, I want the best possible life for every person on the spectrum.
By “better life” I mean physical and mental health and I mean freedom from harassment and discrimination and institutionalization. I want respect for your child and accommodation as needed and I want them to have jobs if they want jobs and friends and partners if they want that. I want your child to be happy and healthy.
...
If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.
That is why I do this.
2.) A recent post entitled My-Blindness (a bit of a play on "mind-blindness", but with a refreshing twist) by Susan Senator, author, bellydancer, and mother of three. Her eldest is 18 years old and autistic. She writes:
I despaired over his autism, because I thought that it was getting in the way of his happiness. But it was really getting in the way of mine. But for him, maybe it was just that he was not ready for those kinds of interactions, and did not make them a priority until he was. Now he loves to be with other kids, other people. And still, he doesn't like talking to them, which is basically all I do with other people I like. So I've learned: Nat has his way, I have mine.
What Nat knows and doesn't know is a bit of a mystery to me. What human is not a mystery to another? We think we know what someone is thinking, we take pleasure in predicting another's actions, or perverse pleasure in recounting another's allegedly evil agendas. But how often are we right?
3.) Amanda Baggs covers the (ridiculous) case of
[A prominent "Autism Speaks" spokesperson] also says, after wondering out loud whether the spectrum is too wide by including Asperger’s at all, that Autism Speaks focuses on the “low functioning” end of the autistic spectrum. If this is so, then they shouldn’t be using the number “1 in 150″ or “1 in 166″ in all their advertising. These numbers explicitly include people labeled with Asperger’s and other people labeled high-functioning. You can’t use a set of people to get money for your cause and then claim that they aren’t the ones you’re talking about.
*** EDIT 6/27/08: Turns out that it wasn't actually "Autism Speaks" prompting the censorship this time -- the t-shirt maker explains here that the whole mess seems to have been the result of a Zazzle employee's butt-covering efforts. Apparently there was a bit of a mix-up over copyright laws and the interpretations thereof, but things have been settled now and the disputed shirts are still available.
(Thanks to Cody at Normal Is Overrated for the heads-up.)
And bear in mind that none of this negates the observation of Amanda's that I quoted above, regarding the apparent lack of math and logic skills rampant in some advocacy organizations -- it is still true that some people are claiming that any autistic person capable of self-advocacy shouldn't have a say in the representation or treatment of autistics, even though plenty of people fully capable of writing and communicating in other ways are part of the "1 in 150" statistic so often employed in the scaremongering process.
Gratuitous Cuteness!
And finally, a cute kitten video I took this weekend - this kitten, named Toby, is currently rooming with Matt's parents, who live nearby. Cute kittens are definitely one of those things that, in my humble opinion, make existence wonderful. =^_^=
Monday, June 23, 2008
Science, Social Justice, and Autistic Self-Advocacy
There are two perspectives (and by "perspectives" here, I mean "ways of looking at things") in my head that I sometimes have difficulty harmonizing with one another as far as autistic self-advocacy goes.
One perspective is extremely data-oriented and considers scientific research (ideally performed in collaboration with researchers who are themselves autistic) to be of paramount importance in characterizing autistic neurology and cognition.
As for why this characterization is important in the first place (aside from the science stuff frankly just being really interesting to a brain-geek like me), this perspective also figures that many of the problems faced by autistic people and our families stem from misconceptions about what autism is -- misconceptions which deny our strengths, misconstrue the reasons behind our behavior, and prompt all sorts of ridiculous assumptions about what we must intrinsically lack (e.g., self-insight, capacity for compassion, etc.).
This perspective is also the one from which I often feel compelled to point out, upon encountering people who invoke the standard litany of "will-nevers" ("she will never live in her own apartment or house, she will never make friends, she will never marry, she will never drive, she will never go to college", etc.) in response to learning that someone happens to be autistic, that these "will-nevers" are by no means justified by the facts.
Now, of course some people truly "will never" do one or more of the things on the above list; I'm presently in the "possibly will never drive" zone myself, for instance.
But nevertheless, it is a fact that autistic people (including some who had speech delays or other indicators often assumed to indicate "low functioning" as children) sometimes do end up growing up capable of doing many things nobody could have predicted when they were younger.
It is a fact that research has revealed areas of measurable strength common to many autistics.
And it is also a fact that, from an historical standpoint, the very first documented study of autistics (in which the word "autistic" was used), included the following observation:
So, basically, from a scientific and observational standpoint, the notion that being autistic automatically brings with it a global cognitive deficit is just plain wrong. It was wrong in Kanner's time, and it is still wrong now. And the wrongness of claiming that someone has this or that deficit, in this context, has nothing to do with making value judgments about people and everything to do with perpetuating misconceptions that could lead to some people being essentially "written off" as not worth the time and effort it might take to educate them or provide them with enrichment opportunities.
The other perspective, however, is much more social-justice oriented, figuring that the longstanding disability rights movement (as well as the superset civil rights movement) have already done all the major philosophical work that autistic advocates need to draw on.
Additionally, this social justice perspective is in some ways orthogonal to the question of what autism is -- it is less concerned with trying to figure out how autistic brains work than with trying to figure out how to secure basic civil rights for people currently labeled or identified as autistic. It is even, at times, leery of fixating too much on the data the scientists like so much, as the data-gathering process (even when done well) might be backed by entities with a primary interest in, say, coming up with a means to identify autistic genes for the sole purpose of eugenically preventing future autistic people.
Moreover, there's also the matter of what the scientific perspective's focus on dispelling misconceptions leaves unsaid. If it is wrong to assume that all autistics have global, severe, cognitive deficits, does that make it somehow okay to write off people who do have global, severe cognitive deficits? I would personally say "absolutely not", and I don't think there's anything inherent in the scientific perspective that claims it's okay to abuse or neglect people once they can be considered "sufficiently disabled", but this kind of discussion does come up from time to time, and it does concern me.
A great example of something the social-justice sector of my brain wholeheartedly agrees with is the essay The Thing Itself Is The Abuse, from the Biodiverse Resistance blog.
Clearly, there are at least two main "things" going on in all this -- first of all, there's the question of what it means for a person to be autistic (and the implications of this for advocacy, for who is considered "qualified" to self-advocate as an autistic person, etc.). And second of all, there are the very real (and extremely distressing) problems of abuse and neglect of, and failure to educate and provide opportunities to, individuals with all types of disabilities.
I want to be able to acknowledge and deal with both these things without having my efforts to do so come across as somehow being ignorant of the other -- e.g., if I point out that plenty of autistic people do actually go on to learn to type or speak, and make friends, I don't want this to come across as denigrating those who cannot type or speak even as adults. I care about them, too, and I would hope that anyone advocating for more ethical treatment of disabled persons would agree that it is not any particular "ability level" in anything that grants a person the "right not to be abused", but that the fundamental problem here lies in the assumption that certain kinds of people can and even should be subject to "extreme aversives" or levels of tranquilizers sufficient to stupefy them.
I have been trying for ages to figure out if these perspectives (the scientific and the social-justice) are compatible, and fundamentally I guess I believe that on some level they are, but it's so difficult to navigate the language around this stuff that I sometimes despair of ever being able to explain why and how my own overall perspective makes sense, even to me.
The closest I can get to that right now, I suppose, is saying that while social justice has nothing to fear from truth (as revealed by properly-done science), science is still a human endeavor, and therefore subject to untoward influence as far as how experiments are designed, conducted, and interpreted. And far from being "anti-scientific", autistic self-advocacy can directly support scientific endeavors by asserting ourselves as stakeholders, even as we work in other contexts toward better ethical standards for all people, regardless of presence, type, or level of disability.
One perspective is extremely data-oriented and considers scientific research (ideally performed in collaboration with researchers who are themselves autistic) to be of paramount importance in characterizing autistic neurology and cognition.
As for why this characterization is important in the first place (aside from the science stuff frankly just being really interesting to a brain-geek like me), this perspective also figures that many of the problems faced by autistic people and our families stem from misconceptions about what autism is -- misconceptions which deny our strengths, misconstrue the reasons behind our behavior, and prompt all sorts of ridiculous assumptions about what we must intrinsically lack (e.g., self-insight, capacity for compassion, etc.).
This perspective is also the one from which I often feel compelled to point out, upon encountering people who invoke the standard litany of "will-nevers" ("she will never live in her own apartment or house, she will never make friends, she will never marry, she will never drive, she will never go to college", etc.) in response to learning that someone happens to be autistic, that these "will-nevers" are by no means justified by the facts.
Now, of course some people truly "will never" do one or more of the things on the above list; I'm presently in the "possibly will never drive" zone myself, for instance.
But nevertheless, it is a fact that autistic people (including some who had speech delays or other indicators often assumed to indicate "low functioning" as children) sometimes do end up growing up capable of doing many things nobody could have predicted when they were younger.
It is a fact that research has revealed areas of measurable strength common to many autistics.
And it is also a fact that, from an historical standpoint, the very first documented study of autistics (in which the word "autistic" was used), included the following observation:
Even though most of these children were at one time or another looked upon as feebleminded, they are all unquestioningly endowed with good cognitive potentialities...The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used.
- Leo Kanner, 1943
So, basically, from a scientific and observational standpoint, the notion that being autistic automatically brings with it a global cognitive deficit is just plain wrong. It was wrong in Kanner's time, and it is still wrong now. And the wrongness of claiming that someone has this or that deficit, in this context, has nothing to do with making value judgments about people and everything to do with perpetuating misconceptions that could lead to some people being essentially "written off" as not worth the time and effort it might take to educate them or provide them with enrichment opportunities.
The other perspective, however, is much more social-justice oriented, figuring that the longstanding disability rights movement (as well as the superset civil rights movement) have already done all the major philosophical work that autistic advocates need to draw on.
Additionally, this social justice perspective is in some ways orthogonal to the question of what autism is -- it is less concerned with trying to figure out how autistic brains work than with trying to figure out how to secure basic civil rights for people currently labeled or identified as autistic. It is even, at times, leery of fixating too much on the data the scientists like so much, as the data-gathering process (even when done well) might be backed by entities with a primary interest in, say, coming up with a means to identify autistic genes for the sole purpose of eugenically preventing future autistic people.
Moreover, there's also the matter of what the scientific perspective's focus on dispelling misconceptions leaves unsaid. If it is wrong to assume that all autistics have global, severe, cognitive deficits, does that make it somehow okay to write off people who do have global, severe cognitive deficits? I would personally say "absolutely not", and I don't think there's anything inherent in the scientific perspective that claims it's okay to abuse or neglect people once they can be considered "sufficiently disabled", but this kind of discussion does come up from time to time, and it does concern me.
A great example of something the social-justice sector of my brain wholeheartedly agrees with is the essay The Thing Itself Is The Abuse, from the Biodiverse Resistance blog.
It's not the inherent wrongness of the treatment that is discussed, it is the supposed "horrible mistake" of subjecting someone to that treatment when that person actually turned out to be not a member of the category of people that it's considered acceptable to do this sort of thing to. No thought is given to why it's supposedly "acceptable" to do it to people who are in that category, despite the fact that, in both cases, the reporting of the incident blatantly begs the question: if it was horrible and inhuman and inacceptable to do this to one person "by mistake", what is it to do it to a whole "Othered" class of people deliberately?
Clearly, there are at least two main "things" going on in all this -- first of all, there's the question of what it means for a person to be autistic (and the implications of this for advocacy, for who is considered "qualified" to self-advocate as an autistic person, etc.). And second of all, there are the very real (and extremely distressing) problems of abuse and neglect of, and failure to educate and provide opportunities to, individuals with all types of disabilities.
I want to be able to acknowledge and deal with both these things without having my efforts to do so come across as somehow being ignorant of the other -- e.g., if I point out that plenty of autistic people do actually go on to learn to type or speak, and make friends, I don't want this to come across as denigrating those who cannot type or speak even as adults. I care about them, too, and I would hope that anyone advocating for more ethical treatment of disabled persons would agree that it is not any particular "ability level" in anything that grants a person the "right not to be abused", but that the fundamental problem here lies in the assumption that certain kinds of people can and even should be subject to "extreme aversives" or levels of tranquilizers sufficient to stupefy them.
I have been trying for ages to figure out if these perspectives (the scientific and the social-justice) are compatible, and fundamentally I guess I believe that on some level they are, but it's so difficult to navigate the language around this stuff that I sometimes despair of ever being able to explain why and how my own overall perspective makes sense, even to me.
The closest I can get to that right now, I suppose, is saying that while social justice has nothing to fear from truth (as revealed by properly-done science), science is still a human endeavor, and therefore subject to untoward influence as far as how experiments are designed, conducted, and interpreted. And far from being "anti-scientific", autistic self-advocacy can directly support scientific endeavors by asserting ourselves as stakeholders, even as we work in other contexts toward better ethical standards for all people, regardless of presence, type, or level of disability.
Sunday, June 22, 2008
So, What Made YOU Heterosexual?
While not gay myself*, The Heterosexual Questionnaire rings quite true for me anyway, as someone who has taken part in numerous discussions with people who can't seem to "get" what's wrong with pathologizing people who have no desire to alter their physical/cognitive configuration (or some aspect thereof) toward something more "normative".
Text appears below, courtesy of Queers United.
(I'm convinced that some people don't even realize they're pathologizing others when they say things like, "Oh, but see, you might think you're happy, but you still have no idea what you're missing!" Ugh.)
* I'm female-bodied, androgynously-brained, and in a long-term monogamous partnership with a male, but I don't consider gender/sex to be the be-all end-all of who I'm going to find attractive. I don't tend to find many people attractive in "that way" to begin with, so I'm honestly not sure what the boundaries of my orientation are -- nor, frankly do I really care, as I'm plenty happy in my partnership to the point of being "hypermonogamous". But I have considered myself something of a "queer ally" for years, regardless.
Text appears below, courtesy of Queers United.
This is a fun survey, but also an activist survey. Please repost this to your email list, myspace bulletin, use it in a group setting, have fun with it but also let the point be made.
1. What do you think caused your heterosexuality?
2. When and where did you decide you were a heterosexual?
3. Is it possible this is just a phase and you will out grow it?
4. Is it possible that your sexual orientation has stemmed from a neurotic fear of others of the same sex?
5. Do your parents know you are straight? Do your friends know- how did they react?
6. If you have never slept with a person of the same sex, is it just possible that all you need is a good gay lover?
7. Why do you insist on flaunting your heterosexuality... can’t you just be who you are and keep it quiet?
8. Why do heterosexuals place so much emphasis on sex?
9. Why do heterosexuals try to recruit others into this lifestyle?
10. A disproportionate majority of child molesters are heterosexual... Do you consider it safe to expose children to heterosexual teachers?
11. Just what do men and women do in bed together? How can they truly know how to please each other, being so anatomically different?
12. With all the societal support marriage receives, the divorce rate is spiraling. Why are there so few stable relationships among heterosexuals?
13. How can you become a whole person if you limit yourself to compulsive, exclusive heterosexuality?
14. Considering the menace of overpopulation how could the human race survive if everyone were heterosexual?
15. Could you trust a heterosexual therapist to be objective? Don't you feel that he or she might be inclined to influence you in the direction of his or her leanings?
16. There seem to very few happy heterosexuals. Techniques have been developed that might enable you to change if you really want to.
17. Have you considered trying aversion therapy?
- Martin Rochlin, Ph.D., 1972
(I'm convinced that some people don't even realize they're pathologizing others when they say things like, "Oh, but see, you might think you're happy, but you still have no idea what you're missing!" Ugh.)
* I'm female-bodied, androgynously-brained, and in a long-term monogamous partnership with a male, but I don't consider gender/sex to be the be-all end-all of who I'm going to find attractive. I don't tend to find many people attractive in "that way" to begin with, so I'm honestly not sure what the boundaries of my orientation are -- nor, frankly do I really care, as I'm plenty happy in my partnership to the point of being "hypermonogamous". But I have considered myself something of a "queer ally" for years, regardless.
Saturday, June 21, 2008
What Each Of Us Notices, Exploratorium Edition
I wrote What Each Of Us Notices a while back to offer a bit of an illustration of how I perceive things. I find perception and its variations fascinating, and I also find that it can sometimes be difficult in the realm of the highly word-oriented Internet to remain cognizant of the myriad ways different people might process, interpret, and appreciate the world around them.
Anyway, while I've been working on a few "wordy" posts that I hope to have in a bloggable state soon, I figured I'd do another perception/picture post tonight, as I spent most of today in San Francisco at the Exploratorium. Aside from it being a bit noisy in that echo-y way that reminds me disconcertingly of the school gymnasiums of my youth, the Exploratorium is one of the coolest environments there is -- not only is there science everywhere, there are also a ton of purely visual delights, including many Things That Spin. :D
The photos below are just a few of the images that caught my eye today.
A panel on the wall made of numerous tiny curved mirrors:
A neat spinny disc-shaped thing in the wall:
A portion of the inside architecture of the Exploratorium. Not an exhibit -- just a collection of lines, angles, and surfaces I found really cool:
Matt (my SO) and me inside a giant kaleidoscope (basically 3 mirrors held together at the edges in a triangle shape):
(As always, I would absolutely love to see images -- drawings, photographs, etc. -- from others, so feel free to comment with links to things you feel are representative of how you see the world.)
Anyway, while I've been working on a few "wordy" posts that I hope to have in a bloggable state soon, I figured I'd do another perception/picture post tonight, as I spent most of today in San Francisco at the Exploratorium. Aside from it being a bit noisy in that echo-y way that reminds me disconcertingly of the school gymnasiums of my youth, the Exploratorium is one of the coolest environments there is -- not only is there science everywhere, there are also a ton of purely visual delights, including many Things That Spin. :D
The photos below are just a few of the images that caught my eye today.
A panel on the wall made of numerous tiny curved mirrors:
A neat spinny disc-shaped thing in the wall:
A portion of the inside architecture of the Exploratorium. Not an exhibit -- just a collection of lines, angles, and surfaces I found really cool:
Matt (my SO) and me inside a giant kaleidoscope (basically 3 mirrors held together at the edges in a triangle shape):
(As always, I would absolutely love to see images -- drawings, photographs, etc. -- from others, so feel free to comment with links to things you feel are representative of how you see the world.)
Thursday, June 12, 2008
Oh (Wonderful) Perilous World
It wouldn't be an exaggeration to say that I've been thoroughly obsessed with Rasputina's album Oh Perilous World! lately. There's just something incredibly compelling about using the cello as a rock instrument, blending metal and classical sensibilities together into a shiny pile of velvet and brocade, and overlaying the whole thing with lyrics that sound like recitations of encyclopedia entries.
Rasputina's lead vocalist and cellist, Melora Creager, began playing the cello at age nine, and is also apparently a history buff, and both of these things come through in spades on Oh Perilous World!. The album's themes are a weird mixture of quirky history lesson and current events (of the generally destructive sort).
While there's plenty to chew on from an antiwar and social commentary standpoint, there's also a layer of pure fun to this album -- an odd juxtaposition, perhaps, but Rasputina manages to make it work. It's the sort of album that makes me alternate between delightedly bouncing up and down in my chair and running to Wikipedia to look up references to Pitcairn Island, Tangata manu, and the apparent "Year Without a Summer" (1816).
The imagery (while decidedly dark) in all the album's songs is refreshingly concrete, which is something I've always appreciated lyrically -- I mean, you can't go wrong (per my taste at least) with lines like:
Grain couldn't ripen under these conditions,
It was brought indoors in urns and pots.
It'd go from ninety-five degrees to freezing within hours,
A brutal struggle for the people and the starving livestock.
and,
Jump the cliff into the ocean
You grab an egg
You swim back
Holding it aloft
You hold it high above the shark infested waters now
Oh my love
I can't help it, I like songs about objects. I like songs that describe physical things, that list dates and temperature parameters and other strings of information. Heck, I'd probably listen to an instruction manual for a DVD player if someone could set it to music -- that's just the sort of person I am, I guess. :P
Anyway, though, while album reviews aren't something I plan to do on Existence is Wonderful on a regular basis, this particular album raised my squee levels to the point where I felt it necessary to mention it here.
Rasputina's lead vocalist and cellist, Melora Creager, began playing the cello at age nine, and is also apparently a history buff, and both of these things come through in spades on Oh Perilous World!. The album's themes are a weird mixture of quirky history lesson and current events (of the generally destructive sort).
While there's plenty to chew on from an antiwar and social commentary standpoint, there's also a layer of pure fun to this album -- an odd juxtaposition, perhaps, but Rasputina manages to make it work. It's the sort of album that makes me alternate between delightedly bouncing up and down in my chair and running to Wikipedia to look up references to Pitcairn Island, Tangata manu, and the apparent "Year Without a Summer" (1816).
The imagery (while decidedly dark) in all the album's songs is refreshingly concrete, which is something I've always appreciated lyrically -- I mean, you can't go wrong (per my taste at least) with lines like:
Grain couldn't ripen under these conditions,
It was brought indoors in urns and pots.
It'd go from ninety-five degrees to freezing within hours,
A brutal struggle for the people and the starving livestock.
and,
Jump the cliff into the ocean
You grab an egg
You swim back
Holding it aloft
You hold it high above the shark infested waters now
Oh my love
I can't help it, I like songs about objects. I like songs that describe physical things, that list dates and temperature parameters and other strings of information. Heck, I'd probably listen to an instruction manual for a DVD player if someone could set it to music -- that's just the sort of person I am, I guess. :P
Anyway, though, while album reviews aren't something I plan to do on Existence is Wonderful on a regular basis, this particular album raised my squee levels to the point where I felt it necessary to mention it here.
The Non-Negotiable Goodness of Saving Lives
Having spent a number of years now paying close attention to articles and other media on the subject of longevity, it seems quite clear to me that most people see no problem with improving healthcare quality and distribution across the board (even as they may differ in their ideas of how this might be accomplished). That is, I don't see any vast conspiracy to "celebrate suffering and death" for people of any age -- quite the contrary, in fact. What I see instead (for the most part) is a world full of vulnerable beings trying to come to terms with that vulnerability.
But -- at the same time, I see some attitudes that genuinely do concern and confound me. For example, some people still respond with expressed worries about economic strife and overpopulation upon hearing that lifespans (at least in some countries) may be increasing, or that some progress is being made in hacking the mechanisms behind the nastier health problems common in old age.
There are so many layers to this stuff I scarcely know where to begin to address it. But I'll make an attempt.
Personally, I like to take an open-ended perspective when speculating about the future. I don't see existing social, economic, and political structures (anywhere in the world) as being "sacred" or intractable to positive change -- change occurs largely as a function of what people decide they value most. So when I see people arguing that much longer lives would be a bad thing because it would stretch existing retirement systems and other benefits (presumably "forcing" the young into longer, harder work days), it seems to me that they're starting at the wrong end of the value equation entirely.
The lack of realism in this projected scenario notwithstanding, why is it that whenever a group characterized at least in some part by its members' vulnerability stands to benefit from some emerging development, it is assumed that the impetus falls on the vulnerable group to "prove" its worth?
More to the point, why is it not assumed instead that individual lives are of primary value, and that the socioeconomic complications which may arise from saving more lives are just things we're going to have to suck up and deal with?
I obviously can't speak for anyone else, but there has never been a question in my mind that when you have a chance to save a life (or several), you take it. You don't (unless your name happens to be Ebenezer Scrooge) sit there playing numbers games, trying to determine whether saving this old person will mean that maybe 10 younger people don't get a big tax break that year, or whether a healthier elderly population might "hurt the job market" for young people.
That said, there are a number of arguments and essays out there by people trying to make a case for why overpopulation and resources won't actually be issues in a future of widespread effective longevity medicine. But my take on the matter is that they shouldn't really be necessary in the first place -- at least not as far as "justifying" healthcare improvements goes from an ethical standpoint.
On the resource/labor market issue: the Longevity Dividend is a pretty darn groundbreaking acknowledgement on the part of Persons of Authority regarding the benefits of better elder health. I have some serious philosophical and ethical problems with describing any population as a "burden", and there are parts of the Longevity Dividend's rhetoric that irk me (hypersensitive as I may be to that sort of thing) for that reason. But as far as the actual arguments go, they make an excellent case for effective longevity medicine being an economic boon as opposed to a crisis.
In other words, I don't think the number-crunching types have anything to worry about.
And on the overpopulation issue: yes, overpopulation can lead to environmental depletion and the kinds of problems that tend to come along with crowding, but there's no reason to assume that improved elder healthcare is incompatible with addressing population and resource problems. If one starts, as I do, from a mindset in which all people are intrinsically valuable and well worth saving on that basis alone, then one has a "given" or constant to work with that must be accounted for in any large-scale project attempted.
Put another way, the acknowledgment of the goodness of saving lives when possible should be non-negotiable. In this framework, no project claiming the goal of "improving" conditions in the world can hinge upon the necessity of people dying by a particular age.
There is absolutely nothing anyone could say to convince me that we ought to "hold off" on developing or distributing better healthcare on population-control grounds -- if you want to make an observation about the problems of overpopulation, fine, but please don't make your population-management strategy contingent upon denying healthcare to certain demographics. All too often I've seen population-management being raised up in the form of apologism for racism, classism, disablism, etc., and ageism is no more acceptable than any of these as a rationale.
Yes, we humans have a hard road ahead of us as far as fixing our environmental problems, economic woes, healthcare messes, persistent social inequality, and other pervasive issues goes, but we must come to terms with the fact that these fixes all need to happen. The fact that it is impossible to do this "perfectly" or immediately is no reason not to try our best in whatever area we've chosen to focus on, and as far as improving healthcare goes, I would say that "trying our best" in this project must entail an acknowledgment that people are valuable and worth saving no matter what their age, background, income level, etc. happens to be.
But -- at the same time, I see some attitudes that genuinely do concern and confound me. For example, some people still respond with expressed worries about economic strife and overpopulation upon hearing that lifespans (at least in some countries) may be increasing, or that some progress is being made in hacking the mechanisms behind the nastier health problems common in old age.
There are so many layers to this stuff I scarcely know where to begin to address it. But I'll make an attempt.
Personally, I like to take an open-ended perspective when speculating about the future. I don't see existing social, economic, and political structures (anywhere in the world) as being "sacred" or intractable to positive change -- change occurs largely as a function of what people decide they value most. So when I see people arguing that much longer lives would be a bad thing because it would stretch existing retirement systems and other benefits (presumably "forcing" the young into longer, harder work days), it seems to me that they're starting at the wrong end of the value equation entirely.
The lack of realism in this projected scenario notwithstanding, why is it that whenever a group characterized at least in some part by its members' vulnerability stands to benefit from some emerging development, it is assumed that the impetus falls on the vulnerable group to "prove" its worth?
More to the point, why is it not assumed instead that individual lives are of primary value, and that the socioeconomic complications which may arise from saving more lives are just things we're going to have to suck up and deal with?
I obviously can't speak for anyone else, but there has never been a question in my mind that when you have a chance to save a life (or several), you take it. You don't (unless your name happens to be Ebenezer Scrooge) sit there playing numbers games, trying to determine whether saving this old person will mean that maybe 10 younger people don't get a big tax break that year, or whether a healthier elderly population might "hurt the job market" for young people.
That said, there are a number of arguments and essays out there by people trying to make a case for why overpopulation and resources won't actually be issues in a future of widespread effective longevity medicine. But my take on the matter is that they shouldn't really be necessary in the first place -- at least not as far as "justifying" healthcare improvements goes from an ethical standpoint.
On the resource/labor market issue: the Longevity Dividend is a pretty darn groundbreaking acknowledgement on the part of Persons of Authority regarding the benefits of better elder health. I have some serious philosophical and ethical problems with describing any population as a "burden", and there are parts of the Longevity Dividend's rhetoric that irk me (hypersensitive as I may be to that sort of thing) for that reason. But as far as the actual arguments go, they make an excellent case for effective longevity medicine being an economic boon as opposed to a crisis.
In other words, I don't think the number-crunching types have anything to worry about.
And on the overpopulation issue: yes, overpopulation can lead to environmental depletion and the kinds of problems that tend to come along with crowding, but there's no reason to assume that improved elder healthcare is incompatible with addressing population and resource problems. If one starts, as I do, from a mindset in which all people are intrinsically valuable and well worth saving on that basis alone, then one has a "given" or constant to work with that must be accounted for in any large-scale project attempted.
Put another way, the acknowledgment of the goodness of saving lives when possible should be non-negotiable. In this framework, no project claiming the goal of "improving" conditions in the world can hinge upon the necessity of people dying by a particular age.
There is absolutely nothing anyone could say to convince me that we ought to "hold off" on developing or distributing better healthcare on population-control grounds -- if you want to make an observation about the problems of overpopulation, fine, but please don't make your population-management strategy contingent upon denying healthcare to certain demographics. All too often I've seen population-management being raised up in the form of apologism for racism, classism, disablism, etc., and ageism is no more acceptable than any of these as a rationale.
Yes, we humans have a hard road ahead of us as far as fixing our environmental problems, economic woes, healthcare messes, persistent social inequality, and other pervasive issues goes, but we must come to terms with the fact that these fixes all need to happen. The fact that it is impossible to do this "perfectly" or immediately is no reason not to try our best in whatever area we've chosen to focus on, and as far as improving healthcare goes, I would say that "trying our best" in this project must entail an acknowledgment that people are valuable and worth saving no matter what their age, background, income level, etc. happens to be.
Friday, June 06, 2008
Chaos and Aesthetics Survey Results
My friend Dora (a Portland State University grad student) has completed the project paper based on her Chaos and Aesthetics Survey - thanks very much to any Existence is Wonderful readers who helped provide her with data!
The "short version" of the results is here (note: it may not make a lot of sense to folks outside Artificial Life classes); a (more accessible) PDF of her presentation explaining the survey's creation process and offering an analysis of the results is here.
I'm not particularly well-versed in Artificial Life studies myself, but I'm definitely intrigued by the idea, and I find it super-nifty indeed that there exists a field of study wherein art, math, and computer programming are so closely intertwined.
(Also, I should point out that in Dora's presentation PDF, the bulk of the text was written as a script to be read by a computerized text-to-speech program -- hence the occasional "odd" spelling here and there.)
The "short version" of the results is here (note: it may not make a lot of sense to folks outside Artificial Life classes); a (more accessible) PDF of her presentation explaining the survey's creation process and offering an analysis of the results is here.
I'm not particularly well-versed in Artificial Life studies myself, but I'm definitely intrigued by the idea, and I find it super-nifty indeed that there exists a field of study wherein art, math, and computer programming are so closely intertwined.
(Also, I should point out that in Dora's presentation PDF, the bulk of the text was written as a script to be read by a computerized text-to-speech program -- hence the occasional "odd" spelling here and there.)
Sunday, June 01, 2008
Question On Characters in Science Fiction Stories
UPDATE 6/3/08: I wrote this post in the throes of a bit of concern over the originality (or lack thereof) in a story I'm working on. I am feeling much better about the whole thing now and as I work on developing the story in my head, I am finding that the characters are "individuating" quite nicely as they inhabit my brain. Thanks to everyone who offered helpful suggestions and thoughts!
I've been on vacation this past week, and in addition to packing up more books for Methuselah Foundation donors, attending my little sister's college graduation, visiting with a cousin from out of town, and doing various other things I don't normally have much time for, I've been working on a science fiction story.
My story presently consists mainly of a piece of graph paper on my desk covered in boxes indicating plot points, arrows, and scrawled notes in teeny-tiny text. I've also been making little cartoony versions of my story's characters in one of those ridiculous-yet-addictive online avatar-maker thingies (except in the case of the robot -- he's an original drawing). And I've been working out a lot of the details in my head as I've gone about my day.
Why am I writing about this? Well, mainly because I'm having a lot of fun with it. I'm terribly excited, almost to the point where the whole thing is so shiny in my head that I can't even look at it face-forward.
However (and I would be very interested in getting some thoughts from anyone else who has written fiction, or attempted to do so), I keep running into one stumbling block that I am not sure how to deal with. I'm not going to let it stop me from writing, of course, but I am curious to know how others handle this kind of thing.
Basically, what's happening is that whenever I come up with a character or plot point, I keep finding all these ways the character or plot point resembles someone I actually know (or me, for that matter), or something that is actually happening in the real world.
Part of me feels kind of silly for being concerned about this. After all, reality is the only place I have to pull ideas from in the first place! And not only that, but despite the speculative and fanciful elements of the scenarios I'm writing about (sentient robots, teenage cyborgs, etc.), I want the story I write to be sufficiently grounded in the real world such that humans will actually be able to relate to it.
But still, I don't want to end up having someone read my story and think that I'm writing about them. I am most certainly not basing anyone in my story on an actual person I know IRL (in fact, I am quite deliberately trying to avoid doing this), but it's more than likely that some people are going to end up being at least partial "composites" of people I've met, known, heard of, etc. Heck, I don't even doubt that some of my fictional characters are going to end up having elements of other fictional characters!
I guess I'm wondering if there's some kind of "check" or test that would-be fiction writers can run their characters through in order to make sure they're "sufficiently original"? Is that kind of thing just a matter of getting good peer review, or what?
Just curious...
I've been on vacation this past week, and in addition to packing up more books for Methuselah Foundation donors, attending my little sister's college graduation, visiting with a cousin from out of town, and doing various other things I don't normally have much time for, I've been working on a science fiction story.
My story presently consists mainly of a piece of graph paper on my desk covered in boxes indicating plot points, arrows, and scrawled notes in teeny-tiny text. I've also been making little cartoony versions of my story's characters in one of those ridiculous-yet-addictive online avatar-maker thingies (except in the case of the robot -- he's an original drawing). And I've been working out a lot of the details in my head as I've gone about my day.
Why am I writing about this? Well, mainly because I'm having a lot of fun with it. I'm terribly excited, almost to the point where the whole thing is so shiny in my head that I can't even look at it face-forward.
However (and I would be very interested in getting some thoughts from anyone else who has written fiction, or attempted to do so), I keep running into one stumbling block that I am not sure how to deal with. I'm not going to let it stop me from writing, of course, but I am curious to know how others handle this kind of thing.
Basically, what's happening is that whenever I come up with a character or plot point, I keep finding all these ways the character or plot point resembles someone I actually know (or me, for that matter), or something that is actually happening in the real world.
Part of me feels kind of silly for being concerned about this. After all, reality is the only place I have to pull ideas from in the first place! And not only that, but despite the speculative and fanciful elements of the scenarios I'm writing about (sentient robots, teenage cyborgs, etc.), I want the story I write to be sufficiently grounded in the real world such that humans will actually be able to relate to it.
But still, I don't want to end up having someone read my story and think that I'm writing about them. I am most certainly not basing anyone in my story on an actual person I know IRL (in fact, I am quite deliberately trying to avoid doing this), but it's more than likely that some people are going to end up being at least partial "composites" of people I've met, known, heard of, etc. Heck, I don't even doubt that some of my fictional characters are going to end up having elements of other fictional characters!
I guess I'm wondering if there's some kind of "check" or test that would-be fiction writers can run their characters through in order to make sure they're "sufficiently original"? Is that kind of thing just a matter of getting good peer review, or what?
Just curious...
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