2008 And Beyond: Out From Under the Pile

What happens when you have two very busy geeks with a penchant for collecting stuff that can only be described as "miscellany" living in a small apartment for several years?

If you've ever wondered about the answers to such a question, look no further than the images below, both of which were taken in my apartment over the past two days.

Bedroom:


Living Room:



Really, if I had to characterize 2008, I would call it the Year of Stuff Building Up. Not just physical stuff in my living space, mind you, but stuff like files on my hard drive, projects on my figurative front and back burners, and mounting exhaustion from trying to keep up a full time engineering job while still having a functional life outside work.

I've actually been on vacation since early December but have not felt like I've produced all that much in the way of "output" -- nevertheless, the month has still been quite productive, especially this past week when my partner and I finally decided we were fed up with the katamari our apartment was turning into (not to mention the sinus-invading armies of dust bunnies it was attracting). It had gotten to the point where in order to get to anything I wanted, I had to move ten other things out of the way and potentially trip over eight more while doing this, and that gets frustrating after a while to say the least.

Furthermore, we had a lot of cardboard. We've lived in this apartment for just over five years, and as far as I know, we've kept almost every box that has ever come through the door, save for the odd one here and there used to mail out a parcel. Before Christmas, I literally had a stack of boxes in the bedroom that nearly reached the ceiling. Not good.

Things are looking better after Monday's Ikea excursion (yay for cheap shelving units!) and today's trip to the local recycling facility, but there's still a fair bit of organizing left to do. I certainly am not attending any New Year's Eve parties -- I will consider it a celebration if I can get my living room floor to not be a safety hazard (and my celebration will likely consist of video games and a nice cup of tea)!

Having my physical space more live-able will probably help drastically with other things I'd like to work on in the coming year (and even in the coming few days, as I have a plethora of Methuselah Foundation donation receipt emails to go through and I would really like to do that before work starts up again). I am, as usual, trying to keep up with whatever I can usefully do in the longevity-advocacy sphere, and in the autistic self-advocacy and civil rights sphere, and hopefully those efforts will play out more productively in 2009.

2008 was not a horrible year for me, but I did end up allowing (mostly via having my brain-bandwidth saturated for long stretches of time) a few things to become very unbalanced. I am still trying to figure out how to achieve that impossible-seeming ideal of a "work-life balance".

The latter half of 2008 (when the economy tanked), I ended up really siphoning much of my available brain into keeping up at work just so I would be more likely to keep my job -- and predictably, aside from some weekend arts-and-crafts projects (like my Vorlon Suit), I found myself unable to do very much in the way of complex writing.

Somehow, the pool of things I could do outside work ended up being contracted to the point where they excluded a lot of things that had to do with language -- so I blogged less, commented less, and responded less to email lists. I was also less "sure" of what I was writing on the occasions when I did write, unless I was writing something that had been a long time coming (such as Conceptualizing Autism, probably the thing I'm most satisfied with having written this past year).

In any case, I will not let this go on too long -- I just wanted to write something for the end of 2008 (and the consequent beginning of 2009) letting anyone who might be reading this know that yes, there will be more (on the usual longevity, autism, sci-fi, and random philosophical subjects) here at Existence is Wonderful in the coming year.

Also, I feel like my blog has dropped in profile somewhat but this is not a bad thing at all; I am by necessity very picky about who (and what organizations) I will associate with, and one absolute requirement for anything I do associate with is that there is actual useful work being done, and tolerance for internal criticism. Both AASPIRE (Academic Autistic Spectrum Partnership In Research and Education) and the Methuselah Foundation fit that criteria for me so I am happy to continue working with them, and of course to continue just writing here about whatever seems like it ought to be written about.

And I definitely think that people who come here to read and comment now tend to be more generally interested in what is actually being said, and I appreciate that immensely. So, to all who have visited and written and who plan to keep coming back despite my highly sporadic posting schedule -- thank you and I hope 2009 shapes up to be a good year for you as well.

Extended Time, "Smart Drugs", and Why It's Not All About Making People Normal

I.

Recently I wrote about accommodations, and one of the accommodations I mentioned having (at least some of the time) in school was extended time on tests.

Well, yesterday I was flipping through a random magazine (I think it was "Family Circle" or something along those lines) and I came across a column in which the author described what she saw as an "alarming" trend toward parents trying to get their children falsely diagnosed with ADHD or learning disabilities so that they could get extra time on their SATs, etc.

I don't know if this is actually a real trend -- I suspect that it isn't -- but frankly even if it isn't, I think it's worth looking at in terms of what it could actually mean.

Personally I had the extended time accommodation because I have a lot of trouble pulling out specific information quickly on demand. It's not that I "don't know" the answers (or how to get them) when I've studied and learned the material, but that it takes me a long time to switch from one cognitive mode to another, and to turn internal signals into coherent output.

This is apparently quite common in autistic people, but it's not just autistic people who deal with it. If more kids are getting educational diagnoses of learning disability, it could very well be that the way schools are doing testing these days is producing disability.

Hopefully that doesn't come across as alarming. By "producing disability" I don't mean that schools and testing are doing things biologically to "normal" students' brains and giving them intrinsic difficulties they didn't previously have. Rather, I mean that there could very well be something about the standard school setup is hindering a lot of students in terms of letting them show what they know.

Functionally, if someone does better on a test when they have extra time -- regardless of whether they do or don't have any "medical" diagnoses -- the standard time limit can legitimately be seen as disabling for them.

In other words, if having more time on a test allows anyone to demonstrate more of what they've actually learned, I don't see why there ought to be any objection to granting them additional time.

While I don't much like the "pushy parent" mentality that causes some parents to frantically obsess over their kid's test scores, and while I don't advocate anyone actually being dishonest (i.e., actually lying to an educational psychologist or similar authority about one's child in order to get them some sort of diagnosis), I don't see what the big deal is about possibly thinking about extending time for everyone if it actually helps more students' scores actually reflect their knowledge and problem-solving abilities.

If someone does not really know the material they're being tested on, no amount of "extra" time will permit them to come up with correct answers. There are, after all, things one must have in one's brain in order to produce the answers to calculus problems that cannot just be summoned out of the aether as a function of having twenty or thirty extra minutes to complete a math test.

Hence, my guess is that a lot of the time limits on tests in educational settings are rooted more in administrative/logistical convenience than in educational value.

I understand that schools are faced with the task of educating many, many students whilst simultaneously coming up with some means of measuring what has been learned. Any time you have such a large-scale operation, some degree of standardization is likely going to come into play, as well as plenty of institutional inertia. I am therefore not suggesting that large scale reform could happen overnight if only people changed their minds about test administration techniques.

What I am suggesting is that people look carefully at what they are defending as valuable in education as it presently stands, and avoid confusing something that merely makes running a large system easier with something that actually benefits students (or their potential future employers!). It could very well be that the drive toward efficiency in education has gone a bit too far toward contracting and condensing testing, to the point where the value of that testing as it is currently administered is questionable.

Not that it was ever ideal before, and I am not proposing a return to some nonexistent "golden age" (or suggesting a plan for a utopian future); I just think that people ought to be wary when they hear statements to the effect of, "Well we can't give all these students extra time, because then they might actually have the opportunity to think!"

As I see it, the skills required to carefully consider the instructions one is given, interpret the nature of the problem, and figure out how to access what one knows (regardless of whether that takes five or fifteen or fifty minutes) are a lot more useful and valuable in the world outside the classroom than the skills required to regurgitate an answer from short-term memory that might not even reflect actual comprehension.

II.

An interesting offshoot from the accommodations discussion is the discourse surrounding the ethics of supposedly "normal" people making use of certain medications thought or demonstrated to improve certain cognitive abilities.

Personally I think that all adults (which would include many college students) should be able to take medications like methylphenidate (Ritalin), modafinil (Provigil), etc., regardless of whether they are diagnosed with anything so long as these drugs are made available in an environment of informed, noncoerced consent.

The main concerns I'd have about wider use of these drugs would be (a) safety (but my guess is that making them more widely accessible through legitimate channels to more people would help safety in its discouragement of black and gray-market traffic where you could end up getting something that turns your eyeballs green), and (b) keeping the scene void of coercion.

It would not be ethically acceptable, for instance, for employers to require that employees take stimulant medications (so that they could work, say, 18-20 hour shifts) or risk being fired because they had to go home to sleep. I am also quite bothered by the idea of young children being medicated before environmental adjustments are even attempted, or in situations where the medication is clearly being used in the manner of a "restraint" (especially when the children in question have communication difficulties that make it harder for them to report side effects, etc.).

What I am not concerned about, though, is the idea that if a "normal" person uses a drug that improves some cognitive skill (albeit temporarily, at least when it comes to presently-existing medications), this somehow constitutes "cheating". This worry -- which I've seen stated in multiple places over the past few years -- seems to be based in several fallacies.

III.

One such fallacy is the idea that when people with diagnosed differences/conditions take these drugs (or for that matter, receive accommodations!), they are just being brought up to "normal" levels and types of performance. This is not actually the case, though, as things aren't nearly that linear or specific when it comes to brains and what they can do under different circumstances.

In college, some of the classes I ended up receiving accommodations in were classed in which my un-accommodated test scores had been in the low C, D, or even F range. However, when I was able to get "time and a half" or double-time on later tests in the same class, I would often achieve scores in the high B or even A range.¹

Furthermore, for some people, certain medications (and I am presuming hypothetically that we are talking about adults here who have chosen and consented to take medication for their own reasons and in the context of accurate information about the medication in question being freely available) probably also mean the difference between not being able to do something at all, and possibly being able to do something very well.

I take one medication currently (Adderall XR) that helps me a lot with something that has been a tremendous challenge my whole life -- frustration tolerance. Now some might suggest I could try to just structure my life in ways that avoided (what would be for me) excessively frustrating situations -- and I have indeed done that to some extent. However, right now my goals and priorities are such that I can't avoid those situations consistently (and I've not found any really effective non-medication method of dealing with them), and hence I choose to get my prescriptions filled.²

And...in light of that, I guess I just don't see why other people, regardless of whether they've been deemed "sufficiently impaired" by whoever is in charge of controlling who gets which medications and when, shouldn't be able to make the same choice.

Certainly safety and consent and autonomy issues must be accounted for in the administration of any drug, device, or other brain-affecting tool within a society, but I don't see for a minute how it could be "cheating" for someone else (who isn't diagnosed with anything necessarily) to access medication similar to what I take.

IV.

Another fallacy that seems to linger behind the "cheating" notion is pretty much exactly the same for medications as it is for accommodations. This fallacy seems to be based in the belief that a particular tool (whether it be a desk in a quiet corner, earplugs, extra time, or Ritalin) somehow grants the person using it an "unfair" advantage in the same manner that something like a "cheat sheet" or a small speaker that whispered the answers in their ear would.

But in reality, if someone doesn't actually know their stuff, neither medication or extended time will magically put the knowledge into her head.

Something that helps a person take best advantage of what is already in their head -- meaning their brain and acquired knowledge -- is not the same as something that permits the person to be deceptive about what they actually know.

If you understand a subject, you understand it, period -- you may or may not benefit from the application of some tool to help you show what you understand, but there's a big and obvious (at least to me) difference between demonstrating actual understanding and faking the appearance of understanding (as occurs in academic cheating).

In other words, regardless of what tools are available to them, people still need to determine how best to study and prepare for assignments and other tasks. If someone really wants to learn and perform well, why shouldn't they have whatever tools help facilitate this? And why should that person have to prove that s/he is somehow "deficient" or "broken" or "sick" in order to access those tools?³

V.

Behind basically all of the preceding discussion is something else that I think merits being brought to light -- and that is the usually-unspoken presumption that the goal of a civilized, inclusive society is to first and foremost get people up to average.

While this apparently sounds to many like a nice, fair, efficient way to go about doing things, it assigns far too much value to the idea of a "standardized" human -- an idea which in turn results in both needless restrictions of particular options from individuals who might otherwise benefit from them, and in unjust coercion of persons with non-normative configurations toward a false ideal of normality.

Hence people making arguments that extended time on tests for students without medically-diagnosed conditions (or what are assumed to be "intrinsic deficits") and the allowance of certain sorts of medications (such as low dose stimulants) to individuals who don't have "clinical" levels of impairment unmedicated comprise "cheating" are in fact subscribing to what I'd consider a fairly destructive standardization mentality.

Furthermore, wanting things to be fair and equitable is all well and good, but in widening access to modification methods and medications it is important to implement checks against status-quo bias so that opportunities do not become obligations. And accommodations -- along with the widening of access to them -- seems like a pretty darn good example of just such a check.

---

1 - This seems to be another common autistic thing (but which may occur in other neurologies as well; I've just noticed a lot of other autistic people noting similar phenomena) -- our learning and performance curves can have an almost exponential quality to them, sometimes to the point where it only takes one seemingly minor variable change to get us beyond the flat part of the curve.

2 - My official diagnosis is Asperger's (and/or "Pervasive Developmental Disorder"; the documentation is a bit confusing, which is yet another reason I'm often compelled to just use the terms "autistic" or "autistic spectrum"). I am not technically currently diagnosed with ADHD, at least not per my most recent evaluation (which said "ADHD is unlikely"). However, in working with the doctor(s) I've seen over the past few years, there has pretty much been agreement that I benefit from the medication often prescribed to people identified as having ADHD.

Moreover, I do not feel "changed" in either personality or cognitive style or anything else when I take my current medication; it really does feel like this medication permits a very fine, very specific adjustment of something about my brain that makes aspects of my life needlessly difficult when not addressed. YMMV.

3 - In my conceptualization of disability, anyone who wants to achieve a particular goal and is facing barriers to achieving that goal is experiencing the effects of disability, regardless of whether they're considered to have a medical or other condition or not.

There ought to be no dichotomy between acknowledging disability and acknowledging that a person is not "broken", just as there ought to be no rule dictating that some conditions must be addressed through modifying the individual whereas others must be addressed through modifying the environment.

Different people are going to vary in how they address the difficulties they encounter throughout life, and restricting particular tools to particular populations labeled "deficient" is unfair both to those (often stigmatized) populations and those who are barred from accessing those tools due to not being considered deficient enough.

What I would like to see someday is a scene wherein if a person needs something, or perceives that they'd benefit from something (especially something that entails doing something in a nonstandard way), they will be helped on the basis of the fact of that thing benefitting them. Not on the basis of whether a doctor says that there is something "wrong" with them or not. And this applies equally to people who, right now, would be considered disabled and to those who would likely not.

Hourglas IV Blog Carnival Posted

The sixth(!) Hourglass Blog Carnival (devoted to longevity/biogerontology and related topics) is now up at Ouroboros.

Carnival originator Chris Patil has done a nice tidy job of packaging up this month's entries -- he observes that many bloggers seem to be a bit quieter right now (I've been pretty quiet myself and again was delinquent in submitting an Hourglass entry), but nonetheless, the selections posted are interesting as always.

Of particular interest to me (h/t Reason) in this month's carnival was the noting of two longevity-oriented research/funding groups I'd not heard of previously -- The Millard Foundation and Sierra Sciences.

Regardless of how productive these endeavors turn out to be, it is always nice to see longevity science efforts branching out and experimenting with different paths and formats and structures -- while I'm a longtime Methuselah Foundation volunteer, I have never presumed that the Methuselah Foundation alone ought to be the sole longevity-oriented nonprofit out there.

With something as precious as the lives and health of everyone alive today at stake, putting all the proverbial eggs into one basket would be quite unwise. We still know far too little about what causes (and what could mitigate) the various physical changes that tend to disproportionately sicken and kill elderly persons -- I say the more the merrier in looking into and funding these investigative efforts.

Also, speaking of the Methuselah Foundation -- there's been a lot of work done lately on the Foundation's website, and you can check out the newly revamped version here.

Accommodations: Essentials For An Open System Society

Accommodations are best (in my humble opinion) conceptualized as methods of accounting for the fact that people's individual skill sets, physical abilities, cognitive strengths and weaknesses, etc., can vary widely. In other words, humans are not homogeneous. However, there have always been "majority configurations", and this has resulted in many physical and social structures being built primarily with majority configurations in mind.

"Disability" means many things to many people, and I would never suggest that any individual must hold their own self-perception to a particular definition of this word. That is, I do not see a valid way of sectioning off one group of humanity as being "intrinsically" disabled as a function of what they happen to be diagnosed with -- very likely there are many people with very similar physical/neurological configurations who nonetheless vary widely in terms of what they consider themselves.

However, in the context of accommodations, "disability" can probably be logically construed as what happens when there's a mis-match between a person and the environment they'd like to be a part of.

Again, this has little to nothing to do with what a person chooses to call him/herself, or with whether a person would (if given the opportunity) take on a more normative configuration. Some people seem to think that invoking anything that sounds like "the social model" is tantamount to telling people they should all just be fine and happy the way they are even if they think they're miserable.

And...I don't believe that to be the case at all. I am not going to impose my view of "what humanity should look like" on others; I don't even have such a view beyond hoping that all of us in our diverse and manifold forms can eventually learn to coexist more effectively. I fully acknowledge that many people would choose to change certain aspects of how they are put together given the choice, and that isn't my choice to make for them.

Nevertheless, the fact remains that in any society worth living in (that is, one that doesn't force normative configurations on people in violation of every imaginable principle of bodily autonomy) there will always be people with nonstandard, minority configurations.

And while some may disagree with me on this, I think that perpetuating an "open system" society (in which more types of people can exist and thrive and even potentially produce new configurations that previous generations couldn't have imagined) is preferable to perpetuating a "closed system" society in which the people were expected to just fit the status quo (whether from birth or via normative re-configuration) or not participate in many enriching and even necessary aspects of life.

But back to the specific matter of accommodations.

In school I had accommodations some of the time -- I don't think I could have gotten through college without them. In particular, I was supposed to get extended time on tests and permission to take tests in a quieter, smaller room where the desks had dividers between them to block out visual distractions. My scores were always higher when I got the full set of accommodations I was supposed to, and it was clear that in particular the extended time helped give me the opportunity to pull information out of my brain so that I could actually show what I knew.

I'd been shocked to have been granted accommodations at all -- one of the junior colleges I attended had tested me for learning disabilities, and I'd quite thoroughly expected to be told, "Oh, you're fine, you just need to try harder."

But instead, I was told that my results pointed to definite things about my brain that would make some aspects of school very difficult.

And I was given various pieces of paper identifying me as a "qualifying student with a disability", which had to be submitted to the DRC of any school I subsequently attended.

However, some professors refused to sign my permission forms to get accommodations. These instructors would tell me things like, "This class is sink or swim. If you can't take my tests in the time I allocate, you shouldn't be in this class or maybe even in this major". Or, occasionally, they'd express a security concern -- e.g., "I am not giving my test to those DRC people [to administer to students in the Disability Resource Center] -- next thing I know it'll be published on the Internet".

I had zero self-advocacy skills at the time all that was going on. I didn't protest. And that meant I didn't always get accommodations.

Still, though, I had no clue that I really had a right to accommodations (and I do not mean a "fundamental natural right" here, because I don't think those actually exist concretely, but rather a legal right deemed appropriate by humans at some point in time).

When my teachers admonished me for "asking for special treatment", I felt guilty for having said anything, and mentally beat myself up a lot for being "weak".

When I was told that needing extra time meant I "didn't really know the material", I took that seriously, and figured that whenever I did well, that must have just been some sort of fluke.

When I was told that my getting accommodations "wouldn't be fair to the other students", I felt awful -- like I was some kind of terrible burden on the school system, and that maybe I shouldn't be there.

As noted before, though, I did graduate. And I did get accommodations some of the time -- some of my teachers actively encouraged my using them, which is good because otherwise I'd likely have felt too guilty. But I am sure my GPA would have been higher if I'd gotten proper test accommodations consistently.

Furthermore, I would probably have actually learned things more thoroughly -- due to my test-taking difficulties, I ended up trying a variety of desperate and probably useless-for-me cramming techniques, thinking that my default study methods (which tend to be very exploratory and hands-on) must be "wrong".

And -- I wouldn't have wasted so much energy second-guessing whether or not I "needed" accommodations.

Now, for those of us with an introspective bent (and autistic people seem to vary as much as nonautistic people in terms of our tendency toward or away from introspectiveness), it may be necessary to second-guess ourselves and our various identifications for a while.

But...at a certain point, second-guessing one's neurology, identification, needs, etc. can start to become destructive.

Primarily this sort of rumination is self-destructive when taken too far, but -- and this is something I've only recently come to acknowledge -- it can also be potentially harmful to others. After all, if you believe that you are weak and burdensome and unworthy because you need particular accommodations, what are you going to think of someone else whose needs are similar?

If I'd known (and known how) to push the issue with my instructors, other students who came after me might have had an easier time getting the accommodations they needed.

In some respects, by taking my teachers seriously when they gave me their "My class is sink or swim!" lectures, I was helping perpetuate the cultural atmosphere in which things like that go unchallenged.

And in the long run, when things like that persist unchallenged, people who might have otherwise been able to graduate from college drop out.

People who might have been perfectly capable of working in a field of their choice end up not working at all.

And yet somehow this cycle is invisible to many -- or at least I presume it must be, considering the number of times I've heard people saying what a "waste" it is to have "special needs" students using resources that I guess they're figuring somehow takes away from the education of the "normal" students.

Now, I do not believe that a person has to go to college or work in order to be valuable as an individual. There are other paths in life people can take, and I realize as well that not having a standard, paying job does not mean a person is not "contributing" to the society they live in.

Furthermore, any society worth living in ought to have means of helping those who cannot work a "regular" job for whatever reason (whether temporarily or permanently) live the best possible lives -- I don't think, given the vast abundance in which which some people live, there's any basis for saying that some people are just too much trouble or too expensive to properly support; we've not even attempted to push the limits in that regard, for all the crowing about scarcity one hears time and time again.

However, it is still important to fight the educational and occupational barriers that are keeping people out who want to pursue particular academic and career paths, and who would be able to pursue those paths if not for various paranoid and discriminatory attitudes and policies.

So...if you are in school, and you are trying to figure out if you should actually use your accommodations or not, I will just say outright: use them.

Insist on using them.

Make it clear that using them does not mean you are "trying to gain an unfair advantage" any more than your professor is doing likewise when he chooses to drive ten miles to work rather than run.

The same goes for people in the workplace (though work can be a bit more complicated -- in some small companies it may be possible to configure one's job so as to permit maximum productivity without even mentioning disability/difference, whereas in larger companies, disclosure of a condition can involve lots of paperwork and HR involvement to the point where individuals may just decide to work out less formal arrangements with managers, etc).

And...the same goes for people who don't go to college or work traditional jobs. Plenty of retired persons, disabled persons on SSI and other forms of assistance, and people who don't work formally for whatever other reason exist, and are just as much members of the community as anyone else.

These individuals must be able to insist -- without it being taken as "ornery" or somehow unfair or unjustified -- on respectful treatment, choices in where they live (i.e., nobody should be forced into a nursing home), and on things like bodily autonomy and what ought to be the simple right to have fun once in a while.

(And bear in mind that I am saying this as someone who is currently employed and who pays taxes -- it makes me happy to think that someone who can't get out of bed might be able to get, say, some DVDs to watch or a book to read because of my tax dollars. I don't see that as someone getting to experience a "life of luxury" on the public purse; I see it as humane.

Nobody should be treated worse than a convicted felon for the mere fact of being unable to work, and the idea that "letting" people live non-horrible existences while not working will somehow lead to mass demotivation or the collapse of industrial society is so silly and ridiculous I will not even engage on that point with anyone.)

No, accommodations can't make everyone the same -- but that is not their purpose, and it is misguided in my mind to conceptualize accommodations as merely "stand-in" provisions made to smooth things over whilst we wait for the means to produce standard, one-size-fits-the-status-quo humans to be developed.

Rather, accommodations should be looked at as ways to help more kinds of people participate more in directing and configuring their own lives. There may be some initial investment needed up-front to put accommodations in place where they haven't existed before -- but it seems like it ought to be a no-brainer than when you make more opportunities accessible via accommodations, the accommodations will more than pay for themselves as more and more people are able to pursue those opportunities.

And furthermore accommodations cannot just be thought of as the province of college disability centers or human-resources departments -- they are the province of everyone who exists and benefits at all from living in the human community.