Saturday, December 29, 2007

Atypical Instruments: Musings on Gaming, Musicianship, and Neuroscience

Guitar Hero and similar games started popping up in American video arcades and electronics stores in around 2005, following on the heels of earlier (and decidedly more aerobic) rhythm-based games like Dance Dance Revolution (which have actually been around, at least in Japan, for nearly a decade). I really only started noticing the proliferation of "guitar controller"-based games in early 2007, and honestly, I didn't really see what the appeal was. Wikipedia accurately describes the game dynamic as follows:

An extended guitar neck is shown vertically on the screen (the frets horizontal), and as the song progresses, colored markers indicating notes travel down the screen in time with the music; the note colors and positions match those of the five fret keys on the guitar controller. Once the note(s) reach the buttom, the player must play the indicated note(s) by holding down the correct fret button(s) and hitting the strumming bar in order to score points. Success or failure will cause the on-screen Rock Meter to change, showing how well the player is playing (denoted by red, yellow, and green sections). Should the Rock Meter drop below the red section, the song will automatically end, with the player booed off the stage by the audience.


So, basically, the player uses a guitar-shaped game controller to activate "notes" (which are represented by colored buttons and, as far as I can tell, don't actually correspond to real notes) as they glide toward her on the television screen. Hit the right note, and you get to keep playing (and the guitar track in the background continues). Hit the wrong note, or fail to hit the note on time, and you hear an unpleasant, tinny noise, followed by an interruption of the guitar track, followed by simulated "booing" noises as you are none-too-subtly "escorted" off stage. When I saw kids playing this in stores, I couldn't help but wonder, Why?

While My Guitar Gently...Beeps?

You see, some of my very earliest memories involve guitars -- specifically, my parents playing songs like the Beatles' Blackbird, or Cat Stevens' Wild World. We always had acoustic guitars in the house while I was growing up; I started getting curious about learning to play myself at around age fourteen, and received an electric guitar (along with a small amplifier) for my fifteenth birthday. I never took any formal lessons; my self-teaching technique consisted mainly of looking at and copying chord diagrams in various books my father had lying around, and listening to songs I liked and trying to match the notes.

Eventually I got to the point where I could identify and play most basic major and minor chords, and consequently pick out things that sounded at least vaguely like a number of rock, folk, and classical melodies. Due to a combination of changing interests and priorities, college, and time/space constraints I never really got very far beyond this point, but I'm still glad I went through the process of becoming at least a mediocre guitar player. There's an odd sort of thrill in being able to hear something pleasant and output something yourself that sounds at least vaguely similar, and playing familiar melodies can be incredibly relaxing once you know how to do it.

Additionally, learning to play an instrument (even if one never reaches virtuoso status) falls squarely into the category of "cool opportunities for personal brainhacking", at least in my book. I was definitely not someone to whom learning to play the guitar came easily, so the process of getting to the point of even mediocre musicianship was bizarre, difficult, mystifying, and incrementally rewarding all at once.

I remember just sitting for what felt like hours in the beginning with my fingers stuck in chord formations, pressing on the strings until it became unbearably painful to do so. I remember crying at school after a teacher told me (probably somewhat hyperbolically, but I was a very literal kid) that in order to ever become a good guitarist I'd need to practice "until my fingers bled". I remember being really annoyed at the fact that my little brother was so much better than me (he's definitely more of a natural musician than I am; I managed to partially make up through stubbornness what I lacked in talent, but he was always far quicker to learn new songs than me and a lot more competent of a player overall).

But perhaps most of all, I remember the incredible feeling of "Whoah, did I really do that?" that swept over me the first time I managed to output the first progression of Bouree in E Minor (thanks, in part, to some very patient help from the aforementioned musically-adept younger sibling).

One moment I was sitting there in a sea of fumbling discord with fingers that stubbornly refused to cooperate; the next moment, I was making the guitar do something that seemed to belie its nature as an inanimate lump of wood and metal. It was definitely one of those moments that made me very conscious of the fact that the brain and body comprise a dynamically interactive system, and that the "mind" is not some ethereal entity that hovers somewhere up above a person's shoulders. Plus, it was just plain neat!

So, I guess you could say guitars hold a special place in my mental storehouse of Significant Things. Video games do as well, actually, since they're (a) fun, (b) something I grew up with (being a card-carrying member of the Nintendo Generation and all), and (c) prone to prompting plenty of musings on interesting topics like learning, memory, and cognition.

But what to think of a guitar-inspired video game? Initially, I wasn't sure. I was mighty skeptical when my boyfriend Matt picked up the Guitar Hero III game for the Nintendo Wii about a month or so ago, but after several nights of glancing over my shoulder at the screen while he played, I found myself really wanting to give it a try.

So I did.

And of course I was awful at first -- my little purple-pigtailed avatar got "booed" off the virtual stage within 10 seconds or so since I basically failed to hit a single correct note. But after a few practice runs, I started hitting notes correctly at least occasionally, and eventually I managed to get through an entire song without getting booed out of the game (the first time that happened, I think my accuracy was something like 56%). Within a few days of spending 15 - 60 minutes playing in the evenings, I ramped up to the point where I could score 95% or above in "Easy" mode fairly consistently.

I've since tried "Medium" a few times and managed to get through a song or two, but mainly, I've been doing less playing lately and more thinking about the process of learning to play Guitar Hero and other games (and, for that matter, real musical instruments). What follows are some observations prompted by this thinking.

The Neuroscience of Gaming and Musicianship

Guitar Hero is, hands-down, far easier to learn than an actual guitar is -- it took me months to get to the point of being able to do anything decent with a real guitar, but only a few hours of GH to get to the point of being able to follow a song in the game from start to finish.

Nevertheless, GH is still more difficult in some very specific ways than the kinds of games I usually tend to favor and do well at. The first few times I played through a song I was quite literally exhausted afterward -- it was as if someone had attached a hose to my head and sucked the neurochemical energy out of my brain, leaving me with nothing more than a solid lump of inert clay in my skull. My eyes hurt from not blinking, my fingers were stiff and shaky, and I seriously considered never touching the game again after feeling its oddly pervasive somatic wrath.

However, the experience of eventually, occasionally coming to hit the right buttons at the right time was powerful enough to urge me to continue practicing. The more I practiced, the longer the time and distance between each note and the next started to seem -- as if my brain was somehow speeding up. That's a really interesting feeling. I really have to wonder how this kind of learning works -- I figure that as I practice more, certain neural connections form to the point where actions can occur without my having to consciously think about them, but it would be very interesting to know how exactly that happens.

Along those lines, The Frontal Cortex recently ran an article entitled Guitar Hero 2 and Plasticity, which featured a video clip of an eight-year-old zipping nonchalantly through one of GH2's songs in "Expert" mode. The article quotes a study of the somatosensory cortex in string players:

Magnetic source imaging revealed that the cortical representation of the digits of the left hand of string players was larger than that in controls. The effect was smallest for the left thumb, and no such differences were observed for the representations of the right hand digits. The amount of cortical reorganization in the representation of the fingering digits was correlated with the age at which the person had begun to play. These results suggest that the representation of different parts of the body in the primary somatosensory cortex of humans depends on use and changes to conform to the current needs and experiences of the individual.


Frontal Cortex suggests that it might be interesting to look at the young Guitar Hero expert's somatosensory cortex -- however, I'd extend this interest to the somatosensory cortices of people who play all sorts of games. The comment in the article lamenting the 8-year-old's time spent playing a game (when he presumably could have been learning to play a "real" guitar) doesn't make a whole lot of sense to me.


Firstly, there's no way to tell from the video whether the kid does or does not already play an actual instrument. He might very well be a young violinist or pianist or classical guitarist. Secondly, I don't see too many people suggesting that kids should be learning instruments instead of playing non-GH games -- sure, plenty of parents would rather their offspring be doing homework or folding laundry or picking up after the dog than staring at Super Mario Bros. for entire weekends, but it seems a bit odd to even try and classify instrument-inspired games as "substitutes for playing real music".

Guitar Hero is no more a "substitute" for real guitar-playing than Street Fighter is a substitute for learning martial arts. While video games may help teach or enhance particular skills, and while certain games and game elements might, in fact, actually translate to isometrically-similar offscreen abilities, I would wager that gaming probably doesn't tend to correlate with the meatspace analogues of what it represents in polygon-land. I imagine that my ability to pick up Guitar Hero despite a very rough start has more to do with my experience playing other video games than with my experience playing the guitar -- you just can't compare the two on the basis that the GH controller looks vaguely guitar-like.

As far as the mapping of the somatosensory cortex, it does seem possible that both instrument-playing and electronic gaming might increase the size of digit representation -- however, given the drastically different skill sets needed to make music with a guitar versus to play Guitar Hero, I'd guess that most people's brains probably don't provide much in the way of instantaneous skill crossover in this regard (not that anyone was suggesting this exactly, I'm just conjecturing here).

For one thing, when you're playing the guitar "for real", you are responsible for producing all the sounds you want to hear (assuming you're playing without a band or accompaniment). As a commenter to the aforementioned Frontal Cortex article noted, when you play a real instrument, you are performing more of a creative than a reactive process (and generally speaking, video games tend to demand reaction moreso than creation on the part of the player).

For another thing, sometimes the skills video games actually grant to a person are very individual (and often unexpected). Back in 2005 I spent a fair bit of time engrosed in the (very visually prettty) online roleplaying game, Guild Wars. Much to my surprise, I found at one point that some of the cognitive tasks in Guild Wars were actually helping me learn extremely useful, transferrable skills that benefitted me both at work and in the process of going about my daily life.

Guild Wars basically forces you to "load" certain skill modules prior to stepping out into the wilderness to fight or quest -- you have a limited number of these module slots, and until you come upon another safe town area, you can only use the modules you loaded last time you were in a town location. As I got better and better at "thinking ahead" in terms of what skills might serve me best for particular quests (and loading those skills accordingly), I found myself starting to realize that I could do the same thing in 'real life', to great benefit.

One thing I've always struggled with is context-switching -- I have a lot of stored knowledge (of facts, of how to do things, etc.), but I can't often access the exact piece of required knowledge on command -- I need time to bring that knowledge "on-line", and I also sometimes need particular triggers to bring it out. Prior to playing Guild Wars it hadn't even occurred to me that I could essentially try and look ahead to what situations I'd be likely to face at work or while running errands and consequently "pre-load" the modules that would give me the best chance of dealing well with the anticipated situations. So while pre-loading doesn't work as smoothly or reliably in meatspace as it does in the context of Guild Wars, it most certainly has given me another cognitive tool to work with. And the discovery of that unanticipated benefit has had me on the lookout ever since for similar opportunities.

As far as Guitar Hero goes in this regard, I'm not sure whether (or when) it will proffer any external, unexpected "enhancements" for me personally. I'm hoping that it at least helps my 29-year-old brain exercise its plasticity circuits to some extent. Mainly, I'm interested in what this game might help me learn about how I process information and execute certain tasks, because that in itself can be both useful and intriguing.

Notes on Speech and Multitasking

This might be an autistic thing (at least partially), but so far it seems that no matter how good/accurate I get at playing Guitar Hero, I can't play the game and simultaneously speak. Moreover, if I even think about forming speech, I almost immediately start missing notes. Even if playing seems "effortless", and even though I can perform other seemingly complex cognitive tasks while playing (like visualizing going into the kitchen and making tea), talking or planning to talk will kill my score every time.

This is really interesting because I've known for a while that spontaneous speech formation is incredibly demanding for me -- to a degree that it doesn't seem to be for others. For a long time I was confused as to why everyone didn't communicate via e-mail and instant-message practically all the time, given how much "easier" writing was than talking. Eventually, though, I started noticing that some people actually tended to complain about how slow and annoying the process of writing was. This came as a bit of a shock!

But once I got past that initial shock, I came to understand that despite sometimes getting "stuck" in an apparently chatty, monologue-laden mode, I actually do have a fair bit of difficulty with speech-based communication. It was a revelation to learn this, and one that I've been able to make plenty of use of since -- e.g., I've learned that pre-loading "speech modules" is essential to effective communication at work when I'm expected to talk, and that sometimes, I need to make use of non-speech-based communication options to the greatest extent possible in order to free up "CPU space" for other complex cognitive tasks. I'd be very curious to know whether other people (autistic or not) have attempted to play games like Guitar Hero either while speaking or while planning out speech in their minds.

The Future?

In thinking about what games like Guitar Hero, video games in general, and modern trends in instrument-playing and instruction might imply for the future, several possibilities come to mind. The Guitar Hero interface might very well be adaptable to a kind of "guitar tutorial" that would actually help teach people to read music (or at least tablature) and play a real guitar. While I stand by my earlier assertion that video games don't have to teach someone how to play an instrument or perform some other physical or mental skill outside the gaming environment, video games have most certainly proven themselves as far as promoting motivated behavior in humans.

It would almost seem silly for those interested in helping others learn to play music, etc., not to consider the vast possibilities in this area offered by electronic entertainment. Even though as noted before, video games tend to require "reactive" responses from those who play them, there's no reason that this has to be the case -- e.g., a fully-functional GH-style instrument tutorial game would basically provide players with feedback very similar to that they would receive from a real instrument -- which is to say that if the player didn't do the right thing, they wouldn't get to hear any music at all. The game interface would also help people keep track of their progress automatically (appealing to the "stats geek" in many of us).

I've also been wondering lately what we "first generation gamers" are going to be like, neurologically speaking, once we're elderly. While video games have been around for as long as I can remember (my dad had an Atari 2600 back in around 1980, and I recall trying to sneak out of bed as a two-year-old so I could watch my babysitters play "Space Invaders"), it is interesting indeed to acnowledge that there aren't presently any living humans old enough to be the subjects of a study of the effects of early video-game-playing in the elderly.

Are those of us who spent our Saturday mornings engaged with what amounted to interactive cartoons going to display different brain-aging patterns than those who only had access to more passive forms of screen-based entertainment?

If we keep playing games, will we be able to maintain neural plasticity longer, or perhaps even ward off certain forms of dementia?

Does gaming constitute a feedback mechanism powerful enough to be classed as a "neural modification"?

The questions are endless, and while they might not all ever be answered, I have to admit that I'm going to be eagerly watching for research news in this area. Considering the deep ties gaming has to brain states and the opportunity it provides for monitoring one's own skill development, I anticipate that people will eventually see it as anything but frivolous!

Monday, December 24, 2007

Book Review: This Alien Shore, by C.S. Friedman

God save us from an Earth in which all men are the same.
God save us from a colony where that is the goal, or assumes that for its norm.
Give me a thousand people speaking different tongues, worshiping different gods, and dreaming different dreams, and I will make of them a greater nation than you can make with ten thousand of your genengineered duplicates.
For mine will have the spark of greatness in them, while yours will live for conformity, worship mediocrity, and take their carefully modulated delight in predigested dreams.


-Reigning In Chaos: the founding of Guera Colony

This Alien Shore, by C.S. Friedman is a science fiction novel depicting a future in which Earth's people have scattered across both space and form.

Overall, the book is probably what I'd call "a good read", though honestly, I found the plot itself less interesting than the depictions of the story's various native societies and technologies. The protagonist is a young Terran woman named Jamisia who, despite an ostensibly standard appearance isn't exactly typical herself -- as the story progresses, she becomes more and more acquainted with the various "Others" who live in her brain, and finds herself having to work with these separate selves on a "teamwork" basis.

It would be giving away too much to explain why she is on the run, and what the peculiar circumstances (both experiential and technological) resulted in her internal plurality to begin with, but suffice to say that this is no cliche "multiple personalities" drama save for a few invoked stereotypes with regard to the individuals residing in Jamisia's brain. For one thing, Jamisia's storyline does not revolve around trying to "get rid of 'alters'" -- rather, at some point she comes to realize that regardless of how they got there, her brainmates are in her head to stay, and she's more likely to come to a state of healthy functionality if she learns to work with them and utilize their particular talents and tendencies as situations call for them.

Obviously this is a story and not meant to be prescriptive of "what to do if you find a whole bunch of other people living in your brain one day", but there are certainly some real-world folks who assert that integration is not the only viable response to multiplicity1.

This Alien Shore has a fair number of plot threads in addition to Jamisia's (though they all do overlap and eventually converge); there are storylines featuring hackers, a powerful and mysterious Net virus, trade monopolies, social tensions between Terrans and Variants, and a host of other intriguing turns of circumstance. This review would probably approach novel length if I attempted to comprehensively discuss every interesting point in the book here, so I'll just focus on a few things that stood out while I was reading.

Technology

Regardless of whether they are Terran or Variant, most characters in This Alien Shore are equipped with some form of technological augmentation.

On the physical side of things, "wellseeker" mechanisms maintain homeostatic conditions in the body in the face of stress, injury, or illness (this is something I'd actually really like to see developed in reality -- the book doesn't specifically mention what degree of increased longevity has been achieved in its featured societies, but considering how much of age-related disease is caused by ongoing wear-and-tear along with the escalation of small problems to pathologies, I can see how something like a "wellseeker" might be very useful in increasing the healthspan.

In addition to being able to perform tissue repairs in the event of wounding, the wellseekers can modulate things like heart rate, blood pressure, hormone levels, etc. (and people also have the option to manually override homeostasis-seeking actions, so if they want to, they can still let their hearts pound when they're watching scary movies and such).

On the cognitive/perceptual side of things, people can read, watch video, communicate, program, operate various devices, etc., using their bio-interfacing "brainware". In fact, the interfacing capabilities of brainware have become so intertwined with many predominant cultural elements that babies are implanted with neural computers at birth (so that their own wetware will grow in concert with the new dynamic circuitry).

Many (if not most) characters have some form of implanted brainware, though there's definitely a sort of fuzzy gradient along which internal technology shades into "external" interfacing technology -- headsets allowing particular kinds of data access are popular, and among Variants, devices that take into account particular aspects of a given Variation are commonplace.

Variation

The descendants of those who stayed on Earth are more or less standard-issue humans per today's standards, save for the fact that most things currently classed as "disabilities" and obvious functional differences have been eliminated.

The descendants of those who took to the stars, however, manifest in a tremendous diversity of shapes, sizes, functionalities, and cognitive styles -- not only are many of the various phenotypes known to us today represented, but the mutating effects of warp-drive technology have expanded the range of viable forms far beyond what you'd even see in the Star Wars cantina. There is no "standard form" among the Variants -- and for the most part, even variations considered "extreme" by the Terrans are simply addressed practically, in full recognition of the unique value of each individual (and his or her particular skill set).

Many Variants are described in This Alien Shore, some only in passing and some more extensively (as some of the main characters are Variants of one stripe or another). Some have tentacles, some are scaled, some have more or less than four limbs. Some locomote by walking; others crawl, slither, prance, or make use of any of various devices (e.g., some move about in personal mecha-like "exoskeleton" machines). Some have the sort of standard sensory set most people would probably associate with "human"; others might not have eyes (in which case they might use a kind of "sensing grid" to perceive their surroundings), while still others have entirely new organs that pick up data in ways that Terrans can't even fathom.

Of all the Variant groups discussed in the book, I found the Guerans to be the most interesting. The Guerans represent a colony populated by those who hold neurological diversity as a core value -- many of their ancestors were affected by the Hausman warp drive in such a way that the genes configuring brain architecture were mutated. As a result, contemporary Guerans manifest what seems to be a considerable portion of the existing real range of human variations (one main character is autistic, others seem to have attributes indicating Tourette's, ADHD, and amplified versions of personality traits like competitiveness), along with other, new cognitive and perceptual stylings.

Rather than seeking to "normalize" themselves or their children, Guerans take a different approach -- their overall culture is flexible and accommodating of many different thinking, learning, and sensing styles. Central meetingplaces at which many different Variants gather are furnished and decorated so as not to overwhelm those with highly sensitive senses, and such that people who use various technological assistive devices are able to do so effectively. Guerans are perhaps less physically diverse than other Variants (e.g., no scales or insectoid carapaces), but mentally, they span a spectrum broader than anything imaginable in the rest of the populated galaxy.

In order to ease communication between different Gueran Variations, most people wear customized face paint -- intricate patterns of lines and angles that, in the Gueran cultural dialect, indicate each person's predominant neurological, cognitive, and personality tendencies. For example, the autistic (Iru) programmer Masada has patterns that signal to others that they shouldn't take things like atypical eye contact and inflection to be signs of rudeness or shiftiness, and that he prefers direct communication to more passive "hinting". This is something I found to be tremendously cool -- I mean, if only I'd had something like that in elementary school, maybe I wouldn't have been sent out in the hall for the crime of "answering rhetorical questions".

I also liked how, among the Guerans, what might be termed "neurotypicality" was considered a type (nantana) and not some kind of universal default that everyone was supposed to aspire toward.

Of course there was a bit of conflict between some iru and some nantana, not to mention a bit of mutual "why can't this person just be more like me?", but overall, the communications between those with these particular differing neurologies seemed uncommonly rational and respectful. For one thing, the nantana, while occasionally annoyed by iru interactive styles, did not go around pitying and lamenting the iru for their very existence. There was no underlying cultural push on Guera to eventually create an "iru-free world"; this idea probably would have struck even the most stodgy nantana as both ridiculous and offensive (rather like how an Earthling might feel if it were suggested to him that we ought to try and eliminate all trees, or all walruses, or all blonde-haired girls).

The fact that some Variations do present people with particular challenges was not ignored by the Guerans. People on Guera tend to be equipped with whatever technology lets them most capitalize on their strengths while addressing their weaknesses; this technology is always employed with the consent of the person using it, and people generally have the freedom to minimize and maximize particular attributes per situational requirements.

For instance, autistic Guerans seem to have devices that enable them to turn down certain sensory channels when input becomes overwhelming -- and this is completely expected and "normal" in their culture, much in the way that it's normal for people today on Earth to employ ear plugs or sunglasses when the need arises. Difference isn't pathologized or idealized; it is simply accepted as something that exists, and worked with on that basis.

There's a lot more to the book, and to the areas of it I've touched on, than I've described here. But if you're interested in reading a speculative description of how different cultures might choose to manage diversity and "disability"-related issues in the context of a cool sci-fi adventure story, I highly recommend you pick up This Alien Shore.



1 - As for whether multiplicity, functional or otherwise, "exists" or not, my opinion is that this is one of those phenomena that isn't presently empirically measurable or provable any more than the existence of one "self" is measurable or quantifiable.

Most people do actually maintain various different "personas" -- i.e., they might seem a very different person at work than they do when out with friends on a Friday night -- and I'd wager that this tendency expresses itself to different degrees in different people, and is also highly affected by cultural factors. Many writers, for instance, describe the phenomenon of having their characters "come alive" and "write themselves" in their minds.

Friday, December 14, 2007

An Advocacy Success: NYU Retracts "Ransom Notes" Campaign

A lot of people have written lately about the New York University Child Study Center's "Ransom Notes" billboard and ad campaign.

I first heard about this campaign a few weeks ago, and honestly, I was at something of a loss for words (hence, my not discussing it publicly until now). The images and messages associated with the campaign were apparently intended to "raise awareness" of childhood mental, psychological, and neurological issues (all carelessly lumped under the category of "psychiatric disorders", but anyway), including autism and Asperger's. Billboards were plastered all over New York, showing stark pictures of several different fake "ransom notes", one for each of the "featured" conditions -- with the emotional hook being the idea that the condition had kidnapped a child and taken him or her "hostage".

Now, believe me, I understand that when someone (child or adult) is having issues or struggling with something, it's good to see that they get whatever help they need. But merely intending to be helpful doesn't mean that whatever a person (or organization) does in the interest of fulfilling their intentions must be accepted uncritically. If you really want to help someone, it seems to me that you'd want their feedback as far as whether your efforts are actually working (or whether they're just making things worse)!

As Kathleen Seidel, parent activist and founder of neurodiversity.com, writes:

[Autistics also deal with] the very real challenges of navigating an environment in which they are bombarded with reminders of their presumed inadequacy and the tragedy and burden that their existence represents to their families and to society. All too many people feel free to characterize autistic people as living a "fate worse than death," as "never really there," as "kidnap victims" and "hollow shells."


The quote above was from a letter in response to a different media piece (that is, not the Ransom Notes campaign). But the message still holds true and remains relevant. If you want to help a group of people, the best way to do so is not to plaster entire cities with billboards that perpetuate oversimplifications, misconceptions, and negative stereotypes about that group of people.

I can't even imagine how horrible it would be to be a youngster living in New York right now, having to walk by all those billboards describing kids like me as "held hostage" by the very same brain differences which shape my strengths, my intense interests, and my ability to find joy in the seemingly mundane as much as they do my weaknesses.

The initial surge of outrage against the "Ransom Notes" campaign (which included an explanatory letter and petition started by the Autistic Advocacy Network) apparently took the NYU folks by surprise.

They initially defended the campaign as something that was merely "edgy" and designed to "cut through the clutter" of holiday advertising and draw people's attention to more important issues, but it seems that they eventually came to realize that the complaints were a shade more nuanced than simple expressions of "hurt feelings" (and there are few things more frustrating than trying to explain why something is unethical and damaging in a very real sense, only to have your critique dismissed as a complaint about "hurt feelings").

I was very pleased to learn earlier today that the NYU Child Study center was retracting the campaign in response to the huge outcry from various self-advocates, parents, disability-rights groups, and other concerned parties.

From the statement of retraction:

Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.


I was even more heartened to see the following statement from Ari Ne'eman, President of the Autistic Advocacy Network (emphasis mine):

...having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us.


I am tremendously grateful to Ari and the other individuals and organizations that have managed to accomplish the truly amazing feat of (hopefully) beginning to bridge the seemingly vast communication gap between organizations like the NYU Child Study Center and the people who live every day as "targets" of well-intentioned but often misguided "awareness campaigns".

As I see it, if you're going to do something from a position of authority which has the chance to shape the way certain other people are perceived and treated on a wide scale, you have an ethical responsibility to (a) get your facts straight, and (b) listen to the voices of people who your message is going to affect the most.

It remains to be seen what the results of the ensuing dialogue between NYU and the community of actual autistic/atypical/disabled people turn out to look like, but the fact that NYU is now at least willing to listen is quite encouraging.

Wednesday, December 12, 2007

Spotlight: The Buck Institute for Age Research

My friend Anna (who works for the Alzheimer's Association) recently drew my attention to the Buck Institute for Age Research. The Buck Institute is an independent research facility focused on studying Alzheimer's, Parkinson's, cancer, stroke, and arthritis and the links between these conditions and advancing age. From their web site:

By focusing on the connection between aging and disease, scientists at the Buck Institute for Age Research are striving to develop diagnostic tests and treatments that will prevent or delay these conditions. Our goal is to increase people's healthspan - the healthy years of life - so that growing older no longer means growing ill.


I'd not heard of the Buck Institute prior to about two weeks ago -- though it's perfectly possible that they've been mentioned on one of the other longevity-oriented sites I read, and I just didn't happen to notice. (There are some familiar names on the Institute's 2007 Scientific Advisory Board page -- Cynthia Kenyon and Leonard P. Guarente are the ones I recognized, and both these individuals are well-established biologists; Dr. Guarente is also an Mprize competitor) In any case, I'm tremendously pleased to see that the Institute exists, and I really like their up-front focus on improving the health of the elderly.

Dale Bredesen, CEO of the Buck Institute, states:

We hope our research will lead medicine from the current approach of “reactive aging,” responding to symptoms that appear late in the course of chronic illnesses, to a new era of “strategic aging,” in which the use of genetic markers, preventive measures, and new treatments will guarantee that people in their 70’s, 80’s, and 90’s have the opportunity to live healthy, productive lives.


The notion of "strategic aging" as described here is actually quite similar to the SENS paradigm on which the Methuselah Foundation is basing its research objectives. Of course everyone is going to get old someday (it's one of those inevitable consequences of being born), but there's no fundamental reason why getting old should have to lead to painful, fatal illness. The notion of "strategic aging" recognizes that people's health needs change as they age, and that it makes much more sense to address these changing needs proactively than wait until a person sits at death's door.

This proactive approach is becoming more and more of a realistic one, and if all goes well, it will hopefully become the default paradigm within a few decades or so. One thing that makes this approach more realistic than before is the fact that we're at a point in time now where it is getting easier to identify disease precursors before they develop into full-blown and obvious health problems. The "action gap" between gerontology (which seeks to understand the aging process at its deepest levels) and geriatrics (which seeks to treat health problems particular to the elderly as they occur) may very well be narrowing, as gerontological findings become more directly observable in living persons.

In other words, there has been a bit of a disconnect until recently in applying gerontological knowledge to potential near-term treatments, but with more focused research and recognition that we may be able to identify within what we tend to think of as "aging" specific factors that lead to nasty diseases nobody wants (like cancer, the incidence of which rises dramatically with age), this disconnect could very well be bridged to everyone's benefit.

The Buck Institute and the Methuselah Foundation/SENS utilize slightly different vocabularies (which is fine -- different vocabularies are accessible to different people from a variety of knowledge and experience backgrounds, after all), but the ultimate goal of both organizations is essentially the same -- that of increasing the human healthspan so that more people are able to live long, robust lives.

In an effort as difficult and complex as dealing with age-related pathology, it strikes me as very important to have multiple groups and organizations working on the various associated issues -- of course as in any area requiring expertise, there is bound to be some overlap and crossover between them in terms of involved persons, but there's still something to be said for not putting all your eggs into one basket when it comes to approaching difficult tasks. I certainly can't reliably speculate on the possibility of collaborative efforts in the future, and my guess is that any such efforts would probably be a net positive, but I see it as quite encouraging that different groups have independently come to the realization that perhaps it's time to start taking the "best of both worlds" approach as far as applying principles of biogerontology and geriatrics to emerging medical developments.

Plus, any and all research that goes toward investigating and mitigating the effects of diseases like Alzheimer's and cancer has the potential to benefit people of all ages. I was recently reading about Tay-Sachs disease (a fatal genetic condition that usually kills before a person reaches the age of four or five, though there are a few later-onset variants), and apparently this condition is actually a lysosomal storage disorder. I hadn't know this before, nor had I known just how many fatal, painful conditions seem to be related to "storage" issues -- apparently there are quite a few, and responding to them is still quite difficult.

Now, of course it would be plenty wonderful if programs like Lyso-SENS or the Buck Institute's Age Associated Diseases research theme ended up leading to treatments specifically effective in storage diseases primarily affecting the elderly, but it's quite exciting to think that this research might have even wider applications.

If anyone is interested in seeing the facility and learning about some of the particulars of the aging process interactively, the Buck Institute offers facility tours. The Institute's main site is located in Novato, California (about 25 miles north of San Francisco). Considering how many longevity-interested folks I know reside in the Bay Area alone, it might be interesting to take a trip to Novato at some point and take a look at a real research facility!

Tuesday, December 11, 2007

Peer Reviewed Literature: A Caveat

One of my new favorite blogs is Three-Toed Sloth - Slow Takes from the Canopy of the Reality-Based Community (and occasional stochastic filtering), authored by Carnegie-Mellon statistician Cosma Shalizi. I don't even remember how I found Sloth (which has nothing to do with sloths in the animal sense, but lots to do with science reporting, concepts of intelligence, complexity, and other neat stuff), but in reading it I've been tremendously refreshed to see such clear and coherent writing on subjects that are so frequently oversimplified and discussed in ways that totally miss their critical nuances.

Anyway, I read a great section on the possible "traps" of peer review today over in Slothville, and I figured I'd share it here because it's something that pretty tidily sums up something I've noticed but not seen nearly enough attention drawn to. In a recent entryShalizi writes (emphasis mine):

...passing peer review is better understood as saying a paper is not obviously wrong, not obviously redundant and not obviously boring, rather than as saying it's correct, innovative and important. Even this misses a deeper problem, a possible failure mode of the scientific community. A journal's peer review is only as good as the peers it uses as reviewers. If everyone, or almost everyone, who referees for some journal is in the grip of the same mistake, then they will not catch it in papers they review, and the journal will propagate it. In fact, since journals usually recruit new referees from their published authors or people recommended by old referees, mistakes and delusions can become endemic and self-confirming in epistemic communities associated with particular journals...

...Put simply, the problem is that any group of quack scholars with a shared delusion can put together a journal, dub each other peer reviewers, and go on their cheerful way by endorsing each others' work for their journal. (One of the ways you can tell that intelligent design creationism is a propaganda front and not a real, if stupid, scholarly movement is that their effort to put together just such a journal was never more than half-assed, and it's moribund for some time now.) This isn't even always a bad thing, since sometimes people who seem like quacks are in fact right, and doing things like starting their own journals gives them a chance to get their act together and assemble a convincing case. But all of this does mean that the peer-review filter is a very weak and accepting one, especially on controversial topics. It does not seem unreasonable of me to ask that those who set themselves up as science reporters grasp this.


Of course, Shalizi is not saying that peer review is useless, or that it doesn't ever "work" -- rather, he's just pointing out something that those of us whose primary connection to the world of experimental science is through papers we've found online would be smart to take heed of. And that is the fact that it isn't enough for a paper to simply be "peer reviewed" or published in a journal. It also has to reflect good experimental design, analysis that takes bias into account (and endeavors to correct for it), among other factors.

The Internet has made peer-reviewed literature available to a far wider range of people than ever before. Even when I was in college between 1997 - 2002 (which wasn't too long ago), I had to go into an actual library building and access microfilm or microfiche to get at real scientific papers. But over the past few years, I've noticed a rather curious phenomenon becoming more and more common online. Pretty much everyone is familiar with "Argumentum Ad Wikipedium" -- when a person on a forum or mailing list links to or copies whole huge blocks of text from Wikipedia articles in order to support their case. But what's also common (particularly among science and technology bloggers) is to do something similar with peer-reviewed papers and other academic literature.

Overall, I see this as great! The fact that we average Internet-enabled citizens now have so much more information at our fingertips is wonderful. I can't help but be in awe sometimes at how much has apparently long been going on in laboratories and university research centres, but which was until recently filtered through layers and layers of interpretation and mass-media distortion before any folks not directly involved in the research got to take a peek at it. There's definitely a lot of fascinating stuff going on (I'm personally very interested in research areas pertaining to autism, biogerontology, artificial intelligence, general neurology, etc.) and it's quite a breath of fresh air to be able to read about what actually went on in an experiment rather than just reading a brief (and quite probably sensationalized) summary account in the popular news media.

But -- there is a caveat here. Those of us who like to read peer-reviewed papers and who use them to back up our own assertions need to independently develop good critical thinking skills, and we need to maintain an "outside the system" vantage point so that we don't get sucked into unthinking trust of the peer-review process. Science isn't just a set of instructions, it's also something people need to consciously engage with -- that is, we can't just read papers and assume that since they were peer-reviewed they reflect good experimental design and such. We also need to know how to tell good experiments from bad experiments in general, and we should also check up on the authors of the papers we read to some extent. As Shalizi notes, sometimes you do end up coming across someone who sounds "quacky" but who is in fact simply ahead of the academic curve, but there are definitely a lot of actual quacks out there. And, frighteningly, some of them have their own journals.

I remember a while back reading through a paper on IQ that someone had linked from a mailing list. At first this paper came across like a fairly standard piece of academic writing, but as I read further, I began to get suspicious. Some of it sounded, well, more than a little bit racist. My first signal was that the word "White" was capitalized when it referred to the color of a subject's skin. While this is by no means proof of bias in any paper (differences in capitalization behavior can exist as quirks of individual writers without necessarily indicating anything about the biases of those writers), it did prompt me to go and look up the authors to see what else they'd been up to. Sure enough, I found that the main writer had been associated with racist activities and organizations.

I'm not going to reveal any names here because I don't want this to become "about" a specific individual or a particular paper -- the point here is just that as soon as I read Shalizi's comment, I knew I'd seen exactly the sort of thing he was referring to.

This age of unparalleled transparency between the scientific community and the (hopefully growing) scientifically literate public is most certainly a positive thing -- but as we gain access to more and more information, we have to develop the skills to avoid being fooled by dubiously clever cranks who find that new electronic publishing media make it very easy to produce something that "looks official" without having the necessary scientific substance behind it.

Monday, December 03, 2007

What Are Little Girls' Brains Made Of?



(From Science Digest, May 1960)

I've scanned and uploaded this entire (extremely weird) article. You can read it using the links below:

Page 1
Page 2
Page 3
Page 4
Page 5

One particularly scary excerpt (from page 4):

I would counsel the woman of intellect to watch her wit. Though it need not be tinged with malice, it has of necessity an astringency which many people find disconcerting. And after the tide of laughter at a woman's wit has ebbed, the wrack left in the public mind is a sort of malaise: "She has a sharp tongue," or "I wouldn't like to tangle with her."

Candor is a second danger. The woman who is honest with men is so at her own risk if this honesty requires either criticism or skepticism of their position.

She must, above all, have no conviction that what she has to say is of importance, but train herself instead to listen quietly to men no more knowledgeable in a given subject than herself and, what is more, also defer to their judgment.


And bear in mind, this was in a science magazine. While I know conditions for women haven't yet improved much everywhere in the world, I'm incredibly thankful that I didn't grow up being told to let the boys win all the time. Not that I'd have listened, but still -- the fact that we don't often see articles like the one linked above much these days (outside the fundamentalist press) strikes me as indicative of some progress on the social front.

This kind of thing used to be normal! And I don't doubt that the women who first stood up to assert that they had every bit as much right to wield their brains in public as men probably got accused of "feminist extremism" and "playing identity politics". I'm glad they didn't desist, and you should be, too. :P