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language and neurodiversity

This video was made by an autistic person whose natural language is very different from the societally accepted means of communication. There is something very familiar, and almost spiritual, about the way she interacts with the world:



See: http://ballastexistenz.autistics.org/?p=287

Thank you to azalynn for posting this. Most people think of the X-Men comics/movies as fiction, but there is a very similar rights struggle between ordinary humans and mutants going on. The rise of autism and asperger syndrome over the past decade, especially in the silicon valley area, has sometimes led me to wonder if the human species is beginning to undergo a transition similar to what's depicted in X-Men. I think it's far too early to tell, but it does appear to be highly genetic in origin, it does appear to give people unexpected new powers that ordinary humans do not have--and unsurprisingly, the mutants are at times regarded as strange, inferior, or even dangerous by the neurotypicals. Thinking differently comes with a high price tag, feeling isolated and at times outright ostracized by just about everyone else. Autistic rights groups are becoming more popular especially on the net, and neurodiversity is becoming a rallying point among those labelled as "cognitively disabled". I'd like to take this opportunity to say that it's of utmost importance that people understand the difference between thinking differently and not thinking at all. I expect this to become even more important with the rise of conscious machines. While some favor a sort of "human solidarity" that encourages narrow human thinking and interaction, I support neurodiversity and transhumanism... a more general approach to personhood.

Comments

( 43 comments — Leave a comment )
kaolinfire
Jan. 21st, 2007 04:04 am (UTC)
beautiful, though I find myself wanting more than two audio tracks at a time. ;) No, but really, very interesting. Very curious.
onhava
Jan. 21st, 2007 04:07 am (UTC)
Have you spent a lot of time understanding the issues involved in "neurodiversity" and "autism rights"? I admit that I haven't, so I wonder if you arrived at your opinion after a study of the issues or if you're just uncritically accepting what the activists say.

As I understand it, the buzzwords you're using here are associated with a movement that claims that autism is not a disorder and does not need to be cured. I worry that this claim is too strong, and that if it is widely accepted it could lead to some people not getting treatment that could help them function better in society. It's a bit of a strawman to say that the options are viewing people as either "not thinking at all" or "thinking differently", and no reasonable person would say that autism means that people are not thinking at all.

Psychology is a messy, complicated subject, and the fact that the people who are being studied have their own thoughts and feelings and opinions makes it all the more difficult to come to conclusions that are scientific, reasonable, and humane. But in the case of, say, schizophrenics, I think anyone reasonable would agree that they have a disease and that it should be treated and, if possible, cured. It's not obvious that this is true of autism in the same way, but it's also not obvious that one can reasonably argue that autism is not a disorder and should never be treated.

This is only complicated by the fact that (as with many psychological conditions) there's a broad spectrum, so that all sorts of people might be in some sense "a little autistic" while clearly not needing any particular treatment. I think that the attempts to paint various historical figures (Einstein, Wittgenstein, etc) as autistic is a little dangerous: first, we can't really know that it is true, and second, the fact that Einstein definitely shouldn't have been "cured" of his way of thinking doesn't mean that a child born today with difficulty functioning in society should not receive any sort of treatment.

There are a lot of scientific and ethical grey areas here, and while I completely agree that we should appreciate that people might think and communicate in very different ways, we should also appreciate that cognitive disorders do exist and that some people might benefit from medical treatment. The brain is a biological organ like any other (except fantastically more complex), and we have to be careful not to avoid calling something a disease just because it affects the brain and not the rest of the body. It's hard to know where to draw the line.

Sorry, this comment is running a bit long, but in short: I am no expert on these issues, but I think the autism rights movement has some valid points to make. On the other hand, I think these ideas easily can and do get carried too far and we need to be careful not to promote the idea that psychological disorders are somehow exempt from medical attention. If there are people with autism-spectrum disorders who benefit from treatment (and I think there are), then there is nothing ethically wrong with treating these people and potentially there is something ethically wrong with not treating them.
azalynn
Jan. 21st, 2007 05:56 am (UTC)
As I understand it, the buzzwords you're using here are associated with a movement that claims that autism is not a disorder and does not need to be cured. I worry that this claim is too strong, and that if it is widely accepted it could lead to some people not getting treatment that could help them function better in society.

This is a common misconception -- you can certainly work to make sure that people who need particular kinds of help get it without necessarily defining the way they are as a pathology. That's sort of the point of neurodiversity: acknowledging that different brains work in different ways, and working to help society understand how to actually help autistic people function, as opposed to just "making us normal".

Certainly, some people do have actual medical problems that need treatment, however, it is very important to look at the ways in which social inequities can contribute to the degree to which something is classified as an intrinsic problem. This is not meant to sound argumentative, but it is another strawman to suggest that autistic rights activists are claiming that nobody should ever get treatment or therapy -- mainly, autistic rights activists are concerned with autonomy issues (e.g., worried that if something called a "cure" were developed, it would be applied coercively) and with the problem of certain kinds of therapies that favor a normal appearance over actual mental health and functioning.

All children need to be parented, and should be given medical care when they have medical problems. But to define autism as a disease, once and for all, suggests that it is something that needs to be gotten rid of, and a lot of autistics (myself included) find that rather unfortunate. It's one thing to say that some autistics need more help than others, but it's quite another to say that autism itself is a pathology. There's a fundamental distinction there.

I do think that there are brain pathologies -- nobody, for instance, would include something like a brain tumor under the blanket of "neurodiversity". The same goes for things like depression, for the most part -- feeling crappy all the time isn't really something people easily find value in. I don't think there's any real danger of people not getting treatment for real disorders and problems...the danger comes in when people are treated, say, against their will for things that they personally find value in.

And this issue gets even trickier when you consider that the way society is right now still excludes and discriminates against certain kinds of people, so people that might not otherwise choose a "cure" would do so just to escape the discrimination -- that's a form of societal coercion, and it's wrong. It's basically like painting someone into a corner, so to speak. I'm not saying that's what WOULD happen in every case, but it's definitely something humans need to watch out for.
onhava
Jan. 21st, 2007 06:26 am (UTC)
Thanks for these comments, I can see that I was to some extent reacting to a caricature of these issues. I was conflating the particular aspects of autism advocacy with more general (e.g. Szaszian) attacks on psychiatry, which was just sloppy thinking on my part.

I hope my comments were not offensive, and I apologize if they were.

I'll probably have more to say later, but thanks for calling me on this, it's good to see that the real neurodiversity viewpoint is more nuanced.
(no subject) - azalynn - Jan. 21st, 2007 06:37 am (UTC) - Expand
(no subject) - onhava - Jan. 21st, 2007 08:27 am (UTC) - Expand
(no subject) - azalynn - Jan. 21st, 2007 09:10 am (UTC) - Expand
(no subject) - easwaran - Jan. 22nd, 2007 02:03 am (UTC) - Expand
azalynn
Jan. 21st, 2007 06:00 am (UTC)
Oh, and another clarification: there are already different kinds of "accomodations" for different kinds of people in society -- an obvious example here is different kinds of bathroom facilities for men and women. Another is the existence of different kinds of specialized doctors for men and women. Just because these two configurations require different services in order to function and remain healthy does not mean that one of the configurations needs to be defined as a disease so that people with that configuration get the help they need.

Sometimes people in autistic advocacy get accused of "wanting to have things both ways" -- that is, wanting special services when necessary, but also not wanting to be classified as "disordered". There really isn't any contradiction here at all -- no more than there's a contradiction between the idea of women not wanting to be classified as diseased for being women, but at the same time wanting women's health services.
azalynn
Jan. 21st, 2007 06:05 am (UTC)
Oh, and while I can't speak for spoonless, I have definitely been involved in understanding neurodiversity and autistic advocacy issues for quite a while now (about 2 years of intensive study, and 28 years of living as a person on the spectrum).
spoonless
Jan. 21st, 2007 08:43 am (UTC)
I have spent a good amount of time over the years thinking about autism and AS, as well as reading literature on it (both from the medical professionals and from the activists), and talking to various people both online and IRL who have had personal experience with it. So yes, I would say that I have a reasonably informed opinion on it and am not just repeating what someone else says. However, like most things that I end up having an opinion on, I wouldn't consider myself an expert on it and I am open to discussing it and possibly updating my opinion if need be.

azalynn definitely knows more about this than I, and I've been learning more from reading her posts on the subject. For the most part we agree, but there are times now and then when I find that my opinions differ from her. Although it's usually not in a big way.

Like you, I'm pretty cautious about taking things too far and just defining any neurological difference, whether good or bad, as "diversity". But I feel like if there is any mental condition which is usually classified as a "disorder" and shouldn't be, it's asperger syndrome (and to some degree autism, depending on which traits you're talking about). I think that many of the problems an AS person faces are due more to non-acceptance rather than inherent problems. There is a similar movement in the deaf community, but there I think the case is less strong because I feel like having more senses is always better than having fewer. Nevertheless, being able to communicate via sign language and through hearing and speaking is probably the best of all. And yet most people don't bother learning sign language since it isn't the standard.

I'm not saying that society should bend-over-backwards to help a select few who operate on a different wavelength to fit in. But I am saying that it would be better for everyone if people were more aware of neurological differences... for instance, if they didn't automatically assume a person is being rude just because they don't make a lot of eye contact, or think they are crazy/stupid just because they have certain eccentric habits, body positions, or inability or unwillingness to use verbal language in the same way as most people.

As for the possiblity of people being refused treatment, I doubt that would happen under the system I would advocate. I support cognitive liberty as a basic inalienable right... that is, I strongly believe that all drugs should be legalized and sold over-the-counter, regardless of whether they are used for recreational, experimental, or medical purposes. (Actually, this is the one political opinion I have that I'm pretty much 100% sure of... and the one that is most important to me personally.) This should probably be a constitutional guarantee, protected as a form of pursuit of happiness, not something that is left up to the states or certain regions to decide. In other words, if I had my way, at no time would anyone be required to prove they had a "disorder" in order to take any drug or be involved in a particular form of therapy.
onhava
Jan. 21st, 2007 09:19 am (UTC)
OK, I think we're in general agreement. And as usual, you have a lot of interesting and well-considered stuff lurking behind your comparisons to X-Men or the Matrix or whatnot. :-)

Actually the deaf community is a really interesting example, I think, because it's pretty much unquestionable that they have a medical "disorder", yet it's also not really possible to argue that deaf culture and sign language are in any meaningful way inferior to mainstream culture and language. (I mean, I would hate to lose the ability to listen to music, but it's not as if other art forms are inferior.) On the other hand, any deaf person who doesn't have access to a community of other deaf people would almost certainly be better off being cured and able to hear. So it's only somehow the ability in today's world of communities of deaf people to form that makes it reasonable to suggest that deafness might not need to be cured.

It's interesting that open access to drugs is the only political opinion you're 100% sure of (what about free speech?). My first reaction was to think "that would never work", but on further thought it seemed more reasonable. I'm still not sure: it would require an open and comprehensible source of information so that people could figure out what drugs have what effects, and I think you need some sort of oversight to keep drug companies from profiting from drugs that turn out to be harmful or worthless. Even then I'm not sure I trust people to not take multiple medications and seriously harm themselves. I guess I just don't know how much the average person would try experimenting with dangerous things outside of what their doctor recommends. (I would be in favor of legalizing and selling over-the-counter any number of particular drugs, but all drugs worries me. Maybe I just need to get used to the idea.)
(no subject) - spoonless - Jan. 21st, 2007 09:47 pm (UTC) - Expand
(no subject) - spoonless - Jan. 21st, 2007 09:55 pm (UTC) - Expand
(no subject) - onhava - Jan. 21st, 2007 10:46 pm (UTC) - Expand
(no subject) - spoonless - Jan. 21st, 2007 11:48 pm (UTC) - Expand
(no subject) - spoonless - Jan. 21st, 2007 11:54 pm (UTC) - Expand
(no subject) - easwaran - Jan. 22nd, 2007 02:13 am (UTC) - Expand
(no subject) - easwaran - Jan. 22nd, 2007 02:14 am (UTC) - Expand
(no subject) - spoonless - Jan. 22nd, 2007 06:48 am (UTC) - Expand
(no subject) - easwaran - Jan. 22nd, 2007 07:41 am (UTC) - Expand
(no subject) - onhava - Jan. 22nd, 2007 07:45 am (UTC) - Expand
easwaran
Jan. 22nd, 2007 02:06 am (UTC)
And yet most people don't bother learning sign language since it isn't the standard.

I'd be a bit more cautious than this - people don't bother learning sign language for the same reason that they don't bother learning Chinese or Dutch or Esperanto. It's a lot of work to learn a language, and if you're not likely to encounter a lot of people who speak that language but not your native language, then it often just isn't worth the effort. (Though I would argue that it's worth the effort to learn some other language. And you might be able to argue that learning a signed language when one already speaks a spoken one might have certain intrinsic benefits.)
(no subject) - spoonless - Jan. 22nd, 2007 06:20 am (UTC) - Expand
azalynn
Jan. 21st, 2007 06:07 am (UTC)
Thanks for posting this...you definitely seem like you understand what I have been trying to "get at" lately, philosophically speaking. Basically, I don't think that sentient life can survive accelerating change without learning to recognize different kinds of cognition on a larger scale.
cobalt999
Jan. 21st, 2007 06:15 am (UTC)
This is fascinating. I've not been exposed to the idea of neurodiversity before, though it seems extraordinarily relevant to transhumanism. Thank you for sharing this.
azalynn
Jan. 21st, 2007 07:04 am (UTC)
Neurodiversity is tremendously relevant to transhumanism -- the way I see it, I doubt that society is going to embrace cyborgs and sentient AI if it can't even acknowledge the valid variations of personhood already in existence. Not to say that all brain differences are things people would actually want (as I noted in an earlier comment, depression generally isn't a sought-after variation), but that there are certainly brain configurations in existence today that are very poorly understood.
(no subject) - cobalt999 - Jan. 21st, 2007 11:55 pm (UTC) - Expand
(no subject) - azalynn - Jan. 22nd, 2007 06:53 am (UTC) - Expand
ikioi
Jan. 21st, 2007 10:08 am (UTC)
I have a couple of possibly naive, or dumb questions/observations. Before I get to them, I'd like to say that this is very interesting. I hear her point that different does not mean non-human and it does not mean "without intelligence" or "without rights".

She began by saying that the video of her language is not meant to "have a particular symbolic message within it designed for the human mind to interpret." She says that her language "is not about designing words or even visual symbols for people to interpret." She also says that "It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings." Susan Goldin-Meadow did extensive studies about gesture as it relates to cognition. She showed that blind people who have never seen gestures perform them, and people gesture in the dark. More, she showed that being unable to gesture (for the blind or seeing in light or dark) decreases one's ability to solve cognitive problems. She went a long way towards showing that gesture, rather than being a means of communicating with others, is actually a mechanism by which we offload cognition from our minds to our bodies for processing. It would seem that in gesturing we use our bodies to do parts of our thinking for us to supplement our brains. This view of gesture seems to be completely in line with the video's author's description of her language. She seems to be describing her language as an elaborate kind of gesturing in the sense of Goldin-Meadow's discoveries. She seems to be saying that her language is for the prupose of understanding and processing the world around her, rather than being for the purpose of communicating. If this is so, why then does she later complain that "it is only when I type something in your language that you refer to me as having communication" ? She herself seems to be saying that her "language" is not for the purpose of communicating with people and then complains that we do not see her language as a type of communication with us. Have I completely misunderstood what she is saying here? Is the first part of the video or her language in general actually an attempt to communicate with others rather than being more like the offloading of cognition onto the hands as in gesture?

continued...
ikioi
Jan. 21st, 2007 10:08 am (UTC)
...continued

She says "Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as `being in a world of my own' whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings people claim that I am `opening up to true interaction with the world'" I have to guess just a little bit as to what she is describing. My guess is that the "limited set of responses" she refers to would be communicating with other people using a language they understand, and that the "limited part of her surroundings" is those other people. If this is what she means then it cannot be an accurate description of the situation. No-one, autistic or otherwise, has the capacity intellectually or physically, to actually interact with their entire surroundings. I cannot inspect the inside of every atom around me, while talking to every person and feeling every texture and making every sound and moving in every way and tasting every food in my vicinity. I cannot "respond to everything around me" and neither can she. That's physically impossible. This is not a trivial or semantic point either. Our physical limits force us to choose what we interact with . At any given moment a person can touch a few things at most, or converse with a people people at most, or smell a couple of things at most, etc. The requirement that we choose what to interact with means that we must prioritize. When people say that she is "in a world of her own" vs "opening up to true interaction with the world" they are referring to whether she has decided to prioritize interacting with the small physical things in her environment in repititious ways, like moving her finger back and forth again and again in a stream of water to the exclusion of interacting with other people. The word "world" in the phrases "world of her own" and "true interaction with the world" does not refer to the literal physical world around her. It refers to the social, abstract and cognitive world of thoughts and the people who think them. It's used in the same sense as the word "world" in the phrase "the modern world". When people say that she is "in a world of her own" they mean that she has de-prioritized interaction with the the social, communicating world. So, contrary to her claim of irony, this is not ironic in the slightest. It makes perfect sense. Most people do not consider a random stream of water (as accessed by putting your finger in it) to be a part of "the world", as opposed to another person (as accessed by having a lingual conversation), which would be part of "the world" as used in the sense of the phrases she describes. This begs the question of whether this definition of "world" is arbitrary. Would it actually be equally useful for "the world", the main areas of our focus, to largely exclude (via de-prioritization), interacting with other people and their thoughts and ideas? Are her ways of interacting with the physical world as useful as the common ways on interactings with the social and cognitive world? Is her langauage just as good as our langauge, only different?

continued...

(no subject) - ikioi - Jan. 21st, 2007 10:10 am (UTC) - Expand
(no subject) - spoonless - Jan. 21st, 2007 10:10 pm (UTC) - Expand
(no subject) - azalynn - Jan. 22nd, 2007 06:56 am (UTC) - Expand
(no subject) - wakasplat - Jan. 23rd, 2007 05:57 am (UTC) - Expand
(no subject) - ikioi - Jan. 24th, 2007 07:06 am (UTC) - Expand
(no subject) - ikioi - Jan. 24th, 2007 07:09 am (UTC) - Expand
(no subject) - wakasplat - Jan. 24th, 2007 03:08 pm (UTC) - Expand
(no subject) - wakasplat - Jan. 24th, 2007 03:07 pm (UTC) - Expand
(no subject) - ikioi - Jan. 24th, 2007 07:42 am (UTC) - Expand
(no subject) - spoonless - Jan. 24th, 2007 09:08 am (UTC) - Expand
(no subject) - ikioi - Jan. 24th, 2007 06:25 am (UTC) - Expand
kairotique
Jan. 21st, 2007 11:13 pm (UTC)
Well, I don't really have much interesting to say about this... I've had so many discussions on this topic lately that I'm honestly a little burnt out about it. But this was very refreshing and interesting, and I just wanted to say thanks for posting it.
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