The headline of this recent BBC story is "Stroke victim was misdiagnosed as mad". While reading it was pretty scary (especially as temporary aphasia can also occur in autism, and in fact i experienced it (albeit only for a few very brief periods) in my teens), it follows a certain pattern that annoys me: in describing the horrible treatment that Steve Hall experienced when "misdiagnosed", it implicitly suggests that the same treatment would be appropriate and acceptable if he actually was "mad".
It reminded me of this case of a woman who was put in a men's prison because she was percieved to be a transsexual woman (and, therefore, in the eyes of the police who arrested her, "really a man") - and of similar cases i've heard of where gender-ambiguous-looking women have been refused entry to women's toilets or other single-sex spaces where they were thought to be MTF transsexuals. As nodesignation says:
The police don’t question the practice of regularly placing trans women in situations where they will be raped. They only lament that they accidentally subjected a non-trans woman to the violence that they regularly subject trans women to. I would assume that as this story gains traction the emphasis will be about how horrible that a woman who was not trans received such mistreatment. That much is clear already from the fact that there are so few stories on trans women receiving this mistreatment despite being its being a regular occurance.
It's not the inherent wrongness of the treatment that is discussed, it is the supposed "horrible mistake" of subjecting someone to that treatment when that person actually turned out to be not a member of the category of people that it's considered acceptable to do this sort of thing to. No thought is given to why it's supposedly "acceptable" to do it to people who are in that category, despite the fact that, in both cases, the reporting of the incident blatantly begs the question: if it was horrible and inhuman and inacceptable to do this to one person "by mistake", what is it to do it to a whole "Othered" class of people deliberately?
It was, and in some places still is, common for autistic people (particularly those who don't fit certain aspects of the commoner autism stereotypes) to be "misdiagnosed" as "schizophrenic", leading to institutionalisation, forced drugging, etc. Similarly, many non-verbal autistic people (who are/were nonetheless capable of communication through other means) are or were "misdiagnosed" as "mentally retarded", again leading to institutionalisation and other abuses "justified" by the "fact" of their supposed incapacity for rational thought or communication. On autism message boards and other communities, these cases tend to be talked about primarily in terms of the horribleness of the "misdiagnosis", often with comments to the effect that "I/you/ze should never have been treated like that, because I'm/you're/ze's autistic, not schizophrenic/mentally retarded/whatever", or seeing the case similarly to someone who was acquitted of a crime after new evidence proved them not guilty, as if to be found to be autistic rather than some other diagnostic category "after all" is what makes all the difference. Even if the people making these sort of comments don't realise it, they're implying that it would be OK to do all those things to someone who actually is "schizophrenic" or "mentally retarded".
(Let's not, here, get into the fact that i actually don't think anyone is "schizophrenic" or "mentally retarded", as i don't think either of those terms is a useful diagnostic category at all... regardless of the label used, if something is unacceptable to do to anyone, it's unacceptable to do to anyone...)
Similar stuff goes on when people who are cognitively "normal", but who have physical impairments (particularly ones such as CP which affect speech) are harassed or discriminated against because they are "mistakenly" assumed to be mentally impaired, and express outrage at having been categorised as such, often asserting their intelligence or educational qualifications in response - implying that harassment or discrimination would be justified if they really were mentally as well as physically impaired (see, for example, Cal Montgomery's fantastic article "Critic of the Dawn", particularly the beginning of the first and the 8th part of the second section).
In the BBC news report, a "spokesman for the Aphasia Alliance" said: "People with aphasia are often wrongly pigeon-holed as stupid... However aphasia does not affect intelligence..." - clearly motivated by a desire to render the particular category of cognitively disabled people he is employed to "speak for" a "respectable" category, because they're not really mentally impaired - again, as if it would be acceptable to mistreat people if they did have the "beyond-the-pale" category of impairment.
I recently found this quote at Rad Geek People's Daily (it's one of the rotating "frontispiece" quotes). While i was surprised to see it coming from who it comes from (he was one of the political philosophers i had to study in the first year of my Politics with International Studies degree, and i remember him as an arch-conservative and one of the least pleasant writers, both in opinions and in style, i ever had to study), it makes it pretty clear (well, apart from the fact that i actually can't identify 3 things that make up the "all three" in the second paragraph) where these kinds of critiques fall far short of logical or ethical consistency.
To prove, that these Sort of policed Societies are a Violation offered to Nature, and a Constraint upon the human Mind, it needs only to look upon the sanguinary Measures, and Instruments of Violence which are every where used to support them. Let us take a Review of the Dungeons, Whips, Chains, Racks, Gibbets, with which every Society is abundantly stored, by which hundreds of Victims are annually offered up to support a dozen or two in Pride and Madness, and Millions in an abject Servitude, and Dependence. There was a Time, when I looked with a reverential Awe on these Mysteries of Policy; but Age, Experience, and Philosophy have rent the Veil; and I view this Sanctum Sanctorum, at least, without any enthusiastick Admiration. I acknowledge indeed, the Necessity of such a Proceeding in such Institutions; but I must have a very mean Opinion of Institutions where such Proceedings are necessary.
I now plead for Natural Society against Politicians, and for Natural Reason against all three. When the World is in a fitter Temper than it is at present to hear Truth, or when I shall be more indifferent about its Temper; my Thoughts may become more publick. In the mean time, let them repose in my own Bosom, and in the Bosoms of such Men as are fit to be initiated in the sober Mysteries of Truth and Reason. My Antagonists have already done as much as I could desire. Parties in Religion and Politics make sufficient Discoveries concerning each other, to give a sober Man a proper Caution against them all. The Monarchic, Aristocratical, and Popular Partizans have been jointly laying their Axes to the Root of all Government, and have in their Turns proved each other absurd and inconvenient. In vain you tell me that Artificial Government is good, but that I fall out only with the Abuse. The Thing! the Thing itself is the Abuse!
—Edmund Burke (1757), A Vindication of Natural Society
Ballastexistenz has many, many incredibly powerful posts that are essential reading on the subject of institutionalisation, and why it's never acceptable, but one of the best is this one, in which Amanda Baggs contrasts the well-known horrors of the Judge Rotenberg Center with the subtler horrors of "nicer" institutions. Just as, in the case of the recent scandal over the prank-calling incident at the JRC, it was not this "abuse" of the electric schock treatment, but the entire treatment regime itself, that was the abuse, it is not just the particular forms of torture practiced at the JRC that is an "abuse" of an institutional system, but the whole institutional system, the whole concept of institutions in which to incarcerate people categorised as "Other", which is abusive at its core.
I had a friend as a teenager who lived in a local authority-run "children's home" (actually for 14-18 year olds) type institution (she wasn't classified as "disabled", although i'm fairly sure she wasn't neurotypical), in which many of the same techniques of oppression and dehumanisation used in disability institutions were commonly used. However, she failed to recognise the inherent wrongness of that type of institution, insisting during the many heated arguments we had about the subject that the staff who had physically abused or pettily taken rights and possessions away from her were just "bad staff", and that others there were "good staff", and that the "home" itself was fundamentally a "good" place. Possibly it was clearer to me, on the outside, than it was to her, on the inside, that it was not "corruption" within Social Services that was the problem, but the entire set of premises on which the concept of "Social Services" was based.
Of course, this argument applies to a whole host of other things: "anti-war" activists and commentators who stop short of being full-blown anti-militarists, for example - those who argue that the Iraq war is wrong, but would have been right if there actually had been weapons of mass destruction in Iraq; a certain category of "gay rights activists" who argue that gay people are not promiscuous as they are stereotyped as, but just as likely to have stable, monogamous relationships as straight people (thus implying that it's acceptable to shame or discriminate against people who are promiscuous); apologists for the oil or nuclear industries who accept that certain particularly blatant examples of environmental destruction were wrong, but insist they were "anomalies" rather than part and parcel of inherently polluting industries; the examples could, in all probability, go on for ever. It's the fundamental basis of the anarchist argument against all government, not just "bad government", and one of the main reasons i identify as an anarchist.
Whether or not we want to adopt an overarching political/philosophical label like "anarchist", however, all of us who fight, with actions or words, for any oppressed groups and against oppression need to actively oppose the hypocrisy of outrage at people being "mistakenly" treated like they are members of a "supposedly OK to exclude, abuse or oppress" category, when the real outrage should be that such a category even exists. The thing itself is the abuse...
Showing posts with label false perceptions. Show all posts
Showing posts with label false perceptions. Show all posts
Thursday, January 3, 2008
Thursday, December 6, 2007
Visibility and/or objectification: images of disabled people in books and media
I was at a friend's house recently and, with my friend and her partner, rather randomly looking through some books that were lying around her house. Two of the books had photos of disabled people in them, and it got me thinking about images of disabled/impaired people, visibility and objectification...
The first book was a university biology textbook on human genetics. Sections of the book discussed various congenital impairments and the genetics behind them, and had accompanying photos of people with those impairments. One was a picture of a baby with Cri du Chat syndrome, which is caused by a partial deletion of a chromosome (and gets its name because babies with it have a distinctive cry which, apparently, sounds like a cat). Alongside the picture of the baby was the remark that, although "mentally retarded", people with Cri du Chat syndrome could, with "proper support", develop intelligence "in the trainable range".
On the next page was a discussion of Down's syndrome, which is caused by trisomy, or having an "extra", third copy of chromosome 23. The accompanying photo was labelled as being of "a child with Down's syndrome"; in actual fact, it looked to be of a young woman in roughly her early 20s. She was dressed in some sort of sporting gear (probably a winter sport like skiing?), and proudly holding a trophy for winning a sporting competition.
The other book was a very silly book supposedly about cryptozoology (if it wasn't that one, it was a very similar one), which was basically a complete work of fiction presented as a "science" book, probably mostly aimed at kids, featuring pseudo-scientific depictions (with fake Latin names, etc) of mythological creatures like centaurs, dragons, winged horses, merpeople, werewolves, unicorns, etc. (Note that cryptozoology is actually real, and a perseveration of mine, and generally deals with somewhat more plausible putative creatures than the above (well, at least when crazy US creationists aren't trying to hijack it)- this speech by Darren Naish is a good introduction to it...)
On the intro page to the "Hominids" chapter (which, rather than dealing with relatively plausible hominid cryptids such as the Almas or the Orang Pendek, was about such creatures as goblins, giants and fairies), however, despite the premise being that it was about fictional non-human species, there were several photos of disabled humans: several people of restricted growth, Joseph Merrick the "Elephant Man", and one of the "Rat Children of Pakistan", who are actually children who were deliberately physically and mentally impaired in order to exploit them as beggars.
All these portrayals are problematic IMO. Cri du Chat syndrome is one of many syndromes which i've only ever seen pictures or descriptions of babies/small children with, despite the fact that people with it grow to become adults. This kind of thing is quite common with regard to autism as well; lots of stuff in the media about "autistic children", but a distinct absence of autistic adults, as if the assumption is that disabled children either don't live to adulthood, or somehow miraculously become non-disabled on reaching adulthood; it also contributes to the perception of disabled adults as some sort of "eternal children". This perception is shown incredibly clearly by the labelling of the photo of the woman with Down's syndrome as "a child with Down's syndrome" - congenital impairment is assumed to be a property (only) of children to such an extent that a person with a congenital impairment, regardless of their actual age, is automatically assumed to be a child. So prevalent is the reference only to children in medical/scientific articles about congenital impairments that i sometimes wonder if the thought of the existence of adults with such impairments has ever crossed the minds of the writers of such articles.
The phrase "trainable range" is one that makes me shudder. A search for "trainable" on Wikipedia redirects to the article titled "Mental retardation", despite the word not being used in that article. I believe that, at one time, people with mental disabilities were classified by the authorities into "trainables" and "untrainables", with the former regarded as being capable of training for employment (in positions at the bottom of the workplace heirarchy, doing menial work and often paid far less than a living wage, if anything at all), and the latter regarded as incapable of any meaningful learning or contribution to society, and thus "warehoused" in institutions. (This, in fact, parallels current UK government policy, as laid out in the Welfare Reform Act, which similarly seeks to classify disabled people as either "capable of work", and thus to be forced into any job, however unsuitable, with the threat of destitution, or "incapable of work", and thus by implication incapable of meaningful membership in society and deserving of social exclusion.) The "trainable"/"untrainable" categorisation starkly illustrates the values of a society which defines people by their capacity for economic exploitation, and which considers it appropriate for disabled people to be coercively "trained" to accept a prescribed social role regardless of their own desires and aspirations.
The fact that images of visibly disabled people are considered an appropriate introduction for a fictional classification of mythological "hominid species" clearly shows to what extent disabled people are considered "Other", objects of fascination yet not of empathy or identification, not fully human; exhibits, just as "exotic" animals are, in a zoo or a freak show (a subject i touched on earlier here) - indeed, it is implied that the "dwarves" whose photo captions say they were exhibited in circuses and at the courts of European royalty are the same as the fictional "dwarves" described a few pages later as a species of Homo with non-human physical and personality traits based on the portrayals of dwarf races in fantasy (Tolkien, etc). "Elephant Man" and "Rat Children" are, of course, names which seek to compare and associate disabled people with animals and portray them as some sort of hybrid or intermediate between humans and animals, definitely not fully human; so, arguably, is "Cri du Chat syndrome".
(Although i know some people of restricted growth use it as a self-definition, i find the term "dwarf" very difficult to use to describe real people, because i can't help it making me think of them as living in mines underneath a mountain, having huge beards and Viking-style helmets, making magical artefacts out of gold and having wars with elves, orcs, etc...)
The writers of the fictional cryptozoology book probably didn't think of the possibility of causing offence to, or furthering negative stereotypes of, disabled people when they used those photos or descriptions. The writers of the genetics textbook almost certainly thought they were portraying disabled people in an ideologically neutral way, as a matter of science, not of culture or politics. However, such images cannot help but objectify and reinforce stereotypical perceptions of disabled people.
Of course, with many if not all of these types of images, i can't help feeling ambiguous; there are some arguable positives to them, despite the negatives. It's good, IMO, that impairments are part of a biological education, and that people have at least a basic knowledge of different impairments and how they affect people (as long as that knowledge is placed appropriately within a social context) - the social model does not, or at least should not, deny or ignore impairment, and understanding of impairment is, IMO, necessary (if not sufficient) for understanding of disabling barriers.
Just being aware that different kinds of human beings exist is, IMO, a good thing, and i think that some sort of categorisation of types of human difference is something that the human mind finds necessary. The image of the young woman with Down's syndrome, if taken by itself without the inaccurate caption calling her a "child", is pretty unambiguously positive; it shows a disabled person looking strong, independent and confident, and proud of her achievement in something that she is a success at. (Admittedly it does reinforce the association of disabled people with sport as primary achievement, which is something i have problems with, but that's a critique i'll have to save for another blog post...)
Even the "freakshow" images of disabled people alongside mythical animals can, IMO, be reclaimed in certain ways; as people proud of and (in many cases) choosing to earn a living from visible difference; "we're here, we're biodiverse, get used to it". (Eli Clare has a great chapter on this topic in Exile and Pride: Disability, Queerness and Liberation, which i'll have to return to in future posts - of course, there is also Tod Browning's magnificent film Freaks, which is justly regarded as a classic by many in the disability movement.)
Kay Olson at The Gimp Parade recently posted about a story that made it into the UK mainstream media about a woman from China who refused a disability pension despite having "her feet attached backwards" (actually turned upside down - i suspect she has a form of arthrogryposis), which is typical of many stories about people with impairments which get featured in the media as "weird news" or "quirky" stories (I'm surprised it didn't make it to the Fortean Times breaking news column, which is my source for most of these types of stories) - another recent-ish one was that of the "families who walk on all fours" in Turkey and Iraq.
On the one hand, these are clearly voyeuristic, objectifying stories; on the other, there are differing views about objectification, ranging from the view that it is always and only negative to the view that it can, if freely chosen, be something desirable and positive (these being in reference to sexual/gender objectification, but IMO applicable to any other kind). I am torn between thinking "this is non-news if it were not for the factor of a "freakish" impaired body for "normal" people to gaze at", and being pleased at visible difference being portrayed at all, and the always-welcome illustration that there are more ways than the "standard" way to be human. Is the positivity or negativity of possible interpretations located in the creator(s) of the portrayal itself, or in the mind of the person observing it?
I'm not sure. (I thought i might have had a conclusion there for a second, but i obviously don't...) I do know that this is both an incredibly important (from a cultural/sociological point of view), yet much neglected, and a (probably inevitably) very much essentially contested area. I'd be really interested in other disabled peoples' (especially those whose impairments are much more visually obvious than my own) opinions...
The first book was a university biology textbook on human genetics. Sections of the book discussed various congenital impairments and the genetics behind them, and had accompanying photos of people with those impairments. One was a picture of a baby with Cri du Chat syndrome, which is caused by a partial deletion of a chromosome (and gets its name because babies with it have a distinctive cry which, apparently, sounds like a cat). Alongside the picture of the baby was the remark that, although "mentally retarded", people with Cri du Chat syndrome could, with "proper support", develop intelligence "in the trainable range".
On the next page was a discussion of Down's syndrome, which is caused by trisomy, or having an "extra", third copy of chromosome 23. The accompanying photo was labelled as being of "a child with Down's syndrome"; in actual fact, it looked to be of a young woman in roughly her early 20s. She was dressed in some sort of sporting gear (probably a winter sport like skiing?), and proudly holding a trophy for winning a sporting competition.
The other book was a very silly book supposedly about cryptozoology (if it wasn't that one, it was a very similar one), which was basically a complete work of fiction presented as a "science" book, probably mostly aimed at kids, featuring pseudo-scientific depictions (with fake Latin names, etc) of mythological creatures like centaurs, dragons, winged horses, merpeople, werewolves, unicorns, etc. (Note that cryptozoology is actually real, and a perseveration of mine, and generally deals with somewhat more plausible putative creatures than the above (well, at least when crazy US creationists aren't trying to hijack it)- this speech by Darren Naish is a good introduction to it...)
On the intro page to the "Hominids" chapter (which, rather than dealing with relatively plausible hominid cryptids such as the Almas or the Orang Pendek, was about such creatures as goblins, giants and fairies), however, despite the premise being that it was about fictional non-human species, there were several photos of disabled humans: several people of restricted growth, Joseph Merrick the "Elephant Man", and one of the "Rat Children of Pakistan", who are actually children who were deliberately physically and mentally impaired in order to exploit them as beggars.
All these portrayals are problematic IMO. Cri du Chat syndrome is one of many syndromes which i've only ever seen pictures or descriptions of babies/small children with, despite the fact that people with it grow to become adults. This kind of thing is quite common with regard to autism as well; lots of stuff in the media about "autistic children", but a distinct absence of autistic adults, as if the assumption is that disabled children either don't live to adulthood, or somehow miraculously become non-disabled on reaching adulthood; it also contributes to the perception of disabled adults as some sort of "eternal children". This perception is shown incredibly clearly by the labelling of the photo of the woman with Down's syndrome as "a child with Down's syndrome" - congenital impairment is assumed to be a property (only) of children to such an extent that a person with a congenital impairment, regardless of their actual age, is automatically assumed to be a child. So prevalent is the reference only to children in medical/scientific articles about congenital impairments that i sometimes wonder if the thought of the existence of adults with such impairments has ever crossed the minds of the writers of such articles.
The phrase "trainable range" is one that makes me shudder. A search for "trainable" on Wikipedia redirects to the article titled "Mental retardation", despite the word not being used in that article. I believe that, at one time, people with mental disabilities were classified by the authorities into "trainables" and "untrainables", with the former regarded as being capable of training for employment (in positions at the bottom of the workplace heirarchy, doing menial work and often paid far less than a living wage, if anything at all), and the latter regarded as incapable of any meaningful learning or contribution to society, and thus "warehoused" in institutions. (This, in fact, parallels current UK government policy, as laid out in the Welfare Reform Act, which similarly seeks to classify disabled people as either "capable of work", and thus to be forced into any job, however unsuitable, with the threat of destitution, or "incapable of work", and thus by implication incapable of meaningful membership in society and deserving of social exclusion.) The "trainable"/"untrainable" categorisation starkly illustrates the values of a society which defines people by their capacity for economic exploitation, and which considers it appropriate for disabled people to be coercively "trained" to accept a prescribed social role regardless of their own desires and aspirations.
The fact that images of visibly disabled people are considered an appropriate introduction for a fictional classification of mythological "hominid species" clearly shows to what extent disabled people are considered "Other", objects of fascination yet not of empathy or identification, not fully human; exhibits, just as "exotic" animals are, in a zoo or a freak show (a subject i touched on earlier here) - indeed, it is implied that the "dwarves" whose photo captions say they were exhibited in circuses and at the courts of European royalty are the same as the fictional "dwarves" described a few pages later as a species of Homo with non-human physical and personality traits based on the portrayals of dwarf races in fantasy (Tolkien, etc). "Elephant Man" and "Rat Children" are, of course, names which seek to compare and associate disabled people with animals and portray them as some sort of hybrid or intermediate between humans and animals, definitely not fully human; so, arguably, is "Cri du Chat syndrome".
(Although i know some people of restricted growth use it as a self-definition, i find the term "dwarf" very difficult to use to describe real people, because i can't help it making me think of them as living in mines underneath a mountain, having huge beards and Viking-style helmets, making magical artefacts out of gold and having wars with elves, orcs, etc...)
The writers of the fictional cryptozoology book probably didn't think of the possibility of causing offence to, or furthering negative stereotypes of, disabled people when they used those photos or descriptions. The writers of the genetics textbook almost certainly thought they were portraying disabled people in an ideologically neutral way, as a matter of science, not of culture or politics. However, such images cannot help but objectify and reinforce stereotypical perceptions of disabled people.
Of course, with many if not all of these types of images, i can't help feeling ambiguous; there are some arguable positives to them, despite the negatives. It's good, IMO, that impairments are part of a biological education, and that people have at least a basic knowledge of different impairments and how they affect people (as long as that knowledge is placed appropriately within a social context) - the social model does not, or at least should not, deny or ignore impairment, and understanding of impairment is, IMO, necessary (if not sufficient) for understanding of disabling barriers.
Just being aware that different kinds of human beings exist is, IMO, a good thing, and i think that some sort of categorisation of types of human difference is something that the human mind finds necessary. The image of the young woman with Down's syndrome, if taken by itself without the inaccurate caption calling her a "child", is pretty unambiguously positive; it shows a disabled person looking strong, independent and confident, and proud of her achievement in something that she is a success at. (Admittedly it does reinforce the association of disabled people with sport as primary achievement, which is something i have problems with, but that's a critique i'll have to save for another blog post...)
Even the "freakshow" images of disabled people alongside mythical animals can, IMO, be reclaimed in certain ways; as people proud of and (in many cases) choosing to earn a living from visible difference; "we're here, we're biodiverse, get used to it". (Eli Clare has a great chapter on this topic in Exile and Pride: Disability, Queerness and Liberation, which i'll have to return to in future posts - of course, there is also Tod Browning's magnificent film Freaks, which is justly regarded as a classic by many in the disability movement.)
Kay Olson at The Gimp Parade recently posted about a story that made it into the UK mainstream media about a woman from China who refused a disability pension despite having "her feet attached backwards" (actually turned upside down - i suspect she has a form of arthrogryposis), which is typical of many stories about people with impairments which get featured in the media as "weird news" or "quirky" stories (I'm surprised it didn't make it to the Fortean Times breaking news column, which is my source for most of these types of stories) - another recent-ish one was that of the "families who walk on all fours" in Turkey and Iraq.
On the one hand, these are clearly voyeuristic, objectifying stories; on the other, there are differing views about objectification, ranging from the view that it is always and only negative to the view that it can, if freely chosen, be something desirable and positive (these being in reference to sexual/gender objectification, but IMO applicable to any other kind). I am torn between thinking "this is non-news if it were not for the factor of a "freakish" impaired body for "normal" people to gaze at", and being pleased at visible difference being portrayed at all, and the always-welcome illustration that there are more ways than the "standard" way to be human. Is the positivity or negativity of possible interpretations located in the creator(s) of the portrayal itself, or in the mind of the person observing it?
I'm not sure. (I thought i might have had a conclusion there for a second, but i obviously don't...) I do know that this is both an incredibly important (from a cultural/sociological point of view), yet much neglected, and a (probably inevitably) very much essentially contested area. I'd be really interested in other disabled peoples' (especially those whose impairments are much more visually obvious than my own) opinions...
Thursday, November 22, 2007
Word power: communication difficulties (with digressions into climate change and the Sapir-Whorf hypothesis)
(this was originally going to be a comment on Bev's blog, but as i don't feel like i've been posting enough about autism as such on my own blog, i decided to expand it into a post proper...)
Bev at Asperger Square 8 has been saying a lot of good stuff about speech and communication recently that i strongly identify with, even though i've nearly always been regarded (by myself and others) as a very verbal person.
As I have mentioned before, writing is easy for me. I can tell you much more in an e-mail than I can in person. Telephone calls are the hardest method of communication.
This is incredibly true of me. I really, really suck at telephone calls with people i don't know well. Calling someone i need to contact but have never spoken to before can be such a daunting task that it can take me literally months to get round to it. (It was September of last year, at a protests against the Labour Party conference in Manchester, when i first met and got the phone number of a fellow disability rights activist here in Birmingham - it was at least November before i phoned him... and then the phone call was an utter nightmare because i couldn't understand his accent. I still haven't called the number of someone who could help with my screwed up benefit claim that i was given at least 2 months ago.)
On the other hand, there are emails to people that i have procrastinated for as long or longer about sending... but in those cases, the reasons for the procrastination are somewhat different. One particular problem i have is when sending emails in "formal" contexts (job applications, enquiries about postgrad courses, etc) is how formal a writing style to use - the normal email style of "Hi" or no salutation whatsoever doesn't feel right, but old fashioned "formal letter" style feels somehow wrong for an email as well - as if i'm some anachronistic luddite who still thinks he's using a fountain pen. (Although, to be fair, i actually am the latter in many respects...) Generally, though, i'm a shitload more fluent in writing than i am in spoken conversation...
(and, when i'm speaking, especially about technical or theoretical subjects, i tend to use the same parenthetical, multi-clause-sentences, uni-essay-like style that i use when writing... which has been known to confuse or infuriate some people...)
(you know you're hyperlexic when you wish you could speak commas, semicolons, quotation marks, ellipses, parentheses, and even, since i've started blogging... HTML links ;o )
I do the drawing/doodling to focus attention while listening thing too, and remember being told off by teachers for it (one weird thing when i first self-diagnosed as Asperger's is that the first book i found about AS had a design on its front cover almost identical to my doodlings in the margins of my school books... i can't remember the exact title or author of the book, but it was an orange and black cover...).
(EDIT: I found the book through the comments to Bev's blog entry - and it is, in fact, a doodle by an actual Aspie! Maybe there is some kind of... shared style, or something? That's actually a bit spooky...)
And another common experience at school was being told off for "not listening", when in fact i was listening, i just wasn't looking... one thing i always want to say is "I can either look at you or listen to you, but not both". Even as a child, it seemed deeply illogical to me that, to be percieved as "listening", one had to be looking in the direction of the person or thing one was supposed to be listening to - after all, humans (unlike many other species of mammals) have eyes on the front of our heads, and ears on the sides of our heads...
~Don’t jump to conclusions based on body language. I have often had people interpret my posture or facial expressions to mean something far from what I was thinking or feeling. If you know someone is autistic, be aware that that person’s face or body may be speaking a foreign language. Nothing kills a conversation faster for me than having someone tell me what I am thinking. Don’t assume.
YES YES YES AND A THOUSAND TIMES YES. I have had some... interesting experiences with friends and acquaintances who thought they could tell what my "body language" was "saying", to put it mildly. One very close and long-running friend (at 5+ years to date, the longest-running close friend i have ever had, in fact) claims that she can interpret my facial expressions, and that they are "consistent" (to my actual emotions), but not the same as the facial expressions a neurotypical person would have while experiencing those same emotions. I'm actually not sure about that one myself, though i'm willing to accept the idea that i do have some meaningfully communicative facial expressions, even if they're not the same as neurotypical ones and/or learned rather than "instinctive" - however, even if it isn't strictly true, i would probably prefer people (who don't know me very well) to assume that my facial expressions are not intentionally communicating anything.
A particular (and possibly related) communication difficulty i often experience (especially with not-particularly-close friends, and/or people who are NT but "sensitive") is that, when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.
(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)
Someone in the comments mentioned not liking it when ze asked people to repeat things and they rephrased them. This is kind of ironic, because i absolutely hate being asked to repeat what i have just said, and often actually can't repeat it in the exact same words, thus often responding with an expanded or rephrased version of it...
The same person talked about difficulties with "passive" language:
I particularly have a hard time when folks make their language “passive” in order to make it sound more polite, or something. Not only is it condescending, it also quite literally changes the meaning.
This strikes a chord with me, because another thing i have an absolutely unreasoning hatred for is the passive voice (I would seriously like to see it wiped out of the English language). The commonest example of this i encounter, and therefore the one that irritates me the most often, is the phrase "Are you being served?"... which raises really interesting questions about how language shapes ideology and vice versa (the Sapir-Whorf hypothesis - a big influence on George Orwell and Ursula Le Guin, both of whom are big influences on me), because of my corresponding horror of the concept of "being served", which is a major component of both my libertarianism and my submissive orientation, and the reason i really don't like going to restaurants... i am actually quite glad that i'm not a PA user). Oddly, i don't have anywhere near as much of a negative reaction to the colloquial use of "to get" to form the passive as i do to the passive formed with "to be". Running with that Sapir-Whorf thing, i can't help wondering if, in a language with no grammatical passive voice, people would be generally more "active" or "do it yourself" in attitude...
Back to the topic, and moving on to the earlier of Bev's posts, there are times when i find talking almost impossible, even though i am "usually" a fluent talker (or at least within my areas of interest)... it's just that the people i socialise with don't tend to see that side of me much, because i only go into social situations when i'm already mentally prepared for talking. For instance, although i'm capable of having a perfectly fluent internal monologue (and even of rehearsing conversations i intend to have, another thing that i have done pretty much all my life without realising until very recently that it was an autistic trait), and of reading and engaging with long discussions online, as soon as i wake up, it takes me at least 2 hours of being awake (and preferably food and caffeine within those 2 hours) before i can coherently talk to another person.
I also, perhaps paradoxically, find it much more difficult to talk to people in my own home than i do in other places (although this is another one which doesn't apply to people who know me well) - i think this is because, in my head, my home is the place where i can "shut down" all the extra brain activities that i feel the need to use in the "outside world" - similarly, most of my sensory issues (hunger, aversion to cold, unpleasant textures, etc) are easier for me to cope with outside the home than inside. I often find myself relying on memorised "script" phrases (basically, echolalia used consciously and constructively) in conversations required of me in the home.
One particularly (although, of course, unintentionally) irritating and stressful habit of several of the people i've shared houses with (none of whom i've been "out" as an autistic person to, although i'm sure they've all percieved "something wrong" with me) is that of shouting out a greeting as soon as they hear someone enter through the door - thus creating an expectation of a reply which i feel both an obligation and an inability to meet, resulting in major (even if arguably trivial) stress. I can usually manage only (at most) a mumbled, inarticulate sound in reply, which i tend to desperately hope vaguely resembles a greeting-word (sometimes i think it's pretty close to "Hi"). Greeting-words in general are a particular difficulty for me, as they seem to be for many autistic people - i find it very, very difficult to pick the right one...
The pressure-to-respond thing also strikes chords - very often, i am much more able to say or do something when i am not being asked or expected to do it than when i am (another possible contributory factor to my libertarian philosophy?). I remember one particular incident when i was cooking for myself and the friend i was living with at the time, when i was literally just about (as in, within half a minute) to start cooking, when said friend knocked on my room door and asked me when i was going to start cooking, The interruption both delayed me starting to cook by about 10 minutes, by forcing me to restart several trains of thought, and made cooking the whole meal a much more stressful experience than if i had not been "prompted" to do it.
I'm not sure how to conclude this post (another of my quirks of verbal communication?), so, er, i'll just... stop here... but, big thanks to Bev for her posts...
Amanda at Ballastexistenz also has a good recent post in the same general subject area here...
Bev at Asperger Square 8 has been saying a lot of good stuff about speech and communication recently that i strongly identify with, even though i've nearly always been regarded (by myself and others) as a very verbal person.
As I have mentioned before, writing is easy for me. I can tell you much more in an e-mail than I can in person. Telephone calls are the hardest method of communication.
This is incredibly true of me. I really, really suck at telephone calls with people i don't know well. Calling someone i need to contact but have never spoken to before can be such a daunting task that it can take me literally months to get round to it. (It was September of last year, at a protests against the Labour Party conference in Manchester, when i first met and got the phone number of a fellow disability rights activist here in Birmingham - it was at least November before i phoned him... and then the phone call was an utter nightmare because i couldn't understand his accent. I still haven't called the number of someone who could help with my screwed up benefit claim that i was given at least 2 months ago.)
On the other hand, there are emails to people that i have procrastinated for as long or longer about sending... but in those cases, the reasons for the procrastination are somewhat different. One particular problem i have is when sending emails in "formal" contexts (job applications, enquiries about postgrad courses, etc) is how formal a writing style to use - the normal email style of "Hi" or no salutation whatsoever doesn't feel right, but old fashioned "formal letter" style feels somehow wrong for an email as well - as if i'm some anachronistic luddite who still thinks he's using a fountain pen. (Although, to be fair, i actually am the latter in many respects...) Generally, though, i'm a shitload more fluent in writing than i am in spoken conversation...
(and, when i'm speaking, especially about technical or theoretical subjects, i tend to use the same parenthetical, multi-clause-sentences, uni-essay-like style that i use when writing... which has been known to confuse or infuriate some people...)
(you know you're hyperlexic when you wish you could speak commas, semicolons, quotation marks, ellipses, parentheses, and even, since i've started blogging... HTML links ;o )
I do the drawing/doodling to focus attention while listening thing too, and remember being told off by teachers for it (one weird thing when i first self-diagnosed as Asperger's is that the first book i found about AS had a design on its front cover almost identical to my doodlings in the margins of my school books... i can't remember the exact title or author of the book, but it was an orange and black cover...).
(EDIT: I found the book through the comments to Bev's blog entry - and it is, in fact, a doodle by an actual Aspie! Maybe there is some kind of... shared style, or something? That's actually a bit spooky...)
And another common experience at school was being told off for "not listening", when in fact i was listening, i just wasn't looking... one thing i always want to say is "I can either look at you or listen to you, but not both". Even as a child, it seemed deeply illogical to me that, to be percieved as "listening", one had to be looking in the direction of the person or thing one was supposed to be listening to - after all, humans (unlike many other species of mammals) have eyes on the front of our heads, and ears on the sides of our heads...
~Don’t jump to conclusions based on body language. I have often had people interpret my posture or facial expressions to mean something far from what I was thinking or feeling. If you know someone is autistic, be aware that that person’s face or body may be speaking a foreign language. Nothing kills a conversation faster for me than having someone tell me what I am thinking. Don’t assume.
YES YES YES AND A THOUSAND TIMES YES. I have had some... interesting experiences with friends and acquaintances who thought they could tell what my "body language" was "saying", to put it mildly. One very close and long-running friend (at 5+ years to date, the longest-running close friend i have ever had, in fact) claims that she can interpret my facial expressions, and that they are "consistent" (to my actual emotions), but not the same as the facial expressions a neurotypical person would have while experiencing those same emotions. I'm actually not sure about that one myself, though i'm willing to accept the idea that i do have some meaningfully communicative facial expressions, even if they're not the same as neurotypical ones and/or learned rather than "instinctive" - however, even if it isn't strictly true, i would probably prefer people (who don't know me very well) to assume that my facial expressions are not intentionally communicating anything.
A particular (and possibly related) communication difficulty i often experience (especially with not-particularly-close friends, and/or people who are NT but "sensitive") is that, when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.
(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)
Someone in the comments mentioned not liking it when ze asked people to repeat things and they rephrased them. This is kind of ironic, because i absolutely hate being asked to repeat what i have just said, and often actually can't repeat it in the exact same words, thus often responding with an expanded or rephrased version of it...
The same person talked about difficulties with "passive" language:
I particularly have a hard time when folks make their language “passive” in order to make it sound more polite, or something. Not only is it condescending, it also quite literally changes the meaning.
This strikes a chord with me, because another thing i have an absolutely unreasoning hatred for is the passive voice (I would seriously like to see it wiped out of the English language). The commonest example of this i encounter, and therefore the one that irritates me the most often, is the phrase "Are you being served?"... which raises really interesting questions about how language shapes ideology and vice versa (the Sapir-Whorf hypothesis - a big influence on George Orwell and Ursula Le Guin, both of whom are big influences on me), because of my corresponding horror of the concept of "being served", which is a major component of both my libertarianism and my submissive orientation, and the reason i really don't like going to restaurants... i am actually quite glad that i'm not a PA user). Oddly, i don't have anywhere near as much of a negative reaction to the colloquial use of "to get" to form the passive as i do to the passive formed with "to be". Running with that Sapir-Whorf thing, i can't help wondering if, in a language with no grammatical passive voice, people would be generally more "active" or "do it yourself" in attitude...
Back to the topic, and moving on to the earlier of Bev's posts, there are times when i find talking almost impossible, even though i am "usually" a fluent talker (or at least within my areas of interest)... it's just that the people i socialise with don't tend to see that side of me much, because i only go into social situations when i'm already mentally prepared for talking. For instance, although i'm capable of having a perfectly fluent internal monologue (and even of rehearsing conversations i intend to have, another thing that i have done pretty much all my life without realising until very recently that it was an autistic trait), and of reading and engaging with long discussions online, as soon as i wake up, it takes me at least 2 hours of being awake (and preferably food and caffeine within those 2 hours) before i can coherently talk to another person.
I also, perhaps paradoxically, find it much more difficult to talk to people in my own home than i do in other places (although this is another one which doesn't apply to people who know me well) - i think this is because, in my head, my home is the place where i can "shut down" all the extra brain activities that i feel the need to use in the "outside world" - similarly, most of my sensory issues (hunger, aversion to cold, unpleasant textures, etc) are easier for me to cope with outside the home than inside. I often find myself relying on memorised "script" phrases (basically, echolalia used consciously and constructively) in conversations required of me in the home.
One particularly (although, of course, unintentionally) irritating and stressful habit of several of the people i've shared houses with (none of whom i've been "out" as an autistic person to, although i'm sure they've all percieved "something wrong" with me) is that of shouting out a greeting as soon as they hear someone enter through the door - thus creating an expectation of a reply which i feel both an obligation and an inability to meet, resulting in major (even if arguably trivial) stress. I can usually manage only (at most) a mumbled, inarticulate sound in reply, which i tend to desperately hope vaguely resembles a greeting-word (sometimes i think it's pretty close to "Hi"). Greeting-words in general are a particular difficulty for me, as they seem to be for many autistic people - i find it very, very difficult to pick the right one...
The pressure-to-respond thing also strikes chords - very often, i am much more able to say or do something when i am not being asked or expected to do it than when i am (another possible contributory factor to my libertarian philosophy?). I remember one particular incident when i was cooking for myself and the friend i was living with at the time, when i was literally just about (as in, within half a minute) to start cooking, when said friend knocked on my room door and asked me when i was going to start cooking, The interruption both delayed me starting to cook by about 10 minutes, by forcing me to restart several trains of thought, and made cooking the whole meal a much more stressful experience than if i had not been "prompted" to do it.
I'm not sure how to conclude this post (another of my quirks of verbal communication?), so, er, i'll just... stop here... but, big thanks to Bev for her posts...
Amanda at Ballastexistenz also has a good recent post in the same general subject area here...
Tuesday, November 13, 2007
What do we want? Equality! When do we want it? Er... in 18 years?
So... today i went to the Equality 2025 conference at the ICC in Birmingham. (I was actually blagged in as a fellow disability rights activist's "PA", but nobody seemed to care once we were in there... at least one other activist i know did the same.) "Equality 2025" is the Office for Disability Issues's big new "brand" for disability rights and equalities, basically consisting of attempting to consult disability activists and (supposedly) using the results of that consultation to influence government policy. Just how real (or, conversely, how tokenistic) that consultation is remains to be seen...
The conference format involved presentations from speakers (some followed by question-and-answer sessions), alternating with splitting into small groups (arranged around numbered tables), each with a "facilitator", to discuss different aspects of the key issues and then choose one person to feed back to the whole conference. It was interesting to observe the similarities and differences to (supposedly) non-hierarchical activist gatherings such as the Camp for Climate action gathering i went to last week, and some of the terms and concepts which seem to have been co-opted by government from new social movements (creating a kind of pseudo-non-hierarchical conference style?)...
One of the 4 "Hot Topics" of the conference was the government's (supposed) aim to set up "User Led Organisations", modelled on the existing Centres for Independent Living, in every area of Britain, and using money from a Department of Health "development fund". Of course, from a cynic's point of view, this is questionable considering that existing CILs are being closed down, struggling to survive funding cuts, or being seriously compromised (arguably even corrupted) by conditional funding from "charitable" sources... A word mentioned several times, but not really clarified, was "businesslike" - seemingly implying that one intent was that the new ULOs should in some way act more like corporations.
The lack of consensus about what the phrase "Independent Living" really means (both in the eyes of the government and in reality), and about what a "User Led Organisation" should look like, was also discussed - some activists challenging even the use of the word "user", and some criticising the implicit medical-model thinking of the funding coming from the DoH. The urban/rural divide also came up, with an interesting (but possibly difficult to implement) idea of a "mobile CIL" that could visit isolated disabled people in rural areas.
Second was the United Nations Convention on Disability Rights. Interestingly, the description of rights given by the presenters in describing the UN Convention was a fundamentally moral conception of rights - i.e., rights as "things" which exist independently of laws and governments (or which "every human has and which cannot be taken away", as one speaker put it), but which can be either upheld or not upheld by laws - a liberal conception which, IMO, somewhat fails to recognise the reality of the lives of people living in the many, many situations (such as disability institutions) where they don't "have" human rights in any meaningful way, regardless of whether they morally or theoretically have those rights. Possibly this is the philosophical question of the difference between an "is" and an "ought"?
The UNCDR is very clearly rooted in the social model of disability - containing such rights as inclusive education, family life, the right to choose where to live, to participate on an equal level in public and political organisations, and to have organisation of disabled people. As such it stands in clear contrast to the DDA 1995 and the current Single Equality Bill, which are both essentially based around a medical model definition of "disability". The UK has signed but not ratified the UNCDR - despite the fact that countries such as Cuba, Jamaica and India have ratified the convention...
The remaining "Hot Topics" were young disabled people's transition to adulthood and disability-related hate crime. Annoyingly, each table was only given the opportunity to discuss one of those issues (ours was given hate crime), and then the tables' responses were read out in indiscriminate order, mixing up the responses to both topics. The person chosen to feed back from our table was a non-disabled spokesperson for Scope and RNIB (note that these charities are now trying to portray themselves as campaigning for equality, while still being controlled by non-disabled people and practicing segregation) - my points about institutional disablism being a root of anti-disabled hate crime, and things being done to disabled people (such as locking them up and denying them rights as basic as the right to choose what to eat, when to go to bed or when to go to the toilet, cutting out their organs without their consent, or killing them) which would be universally considered hate crimes if they were done to any other minority group, being considered to be acts of "care" and done in our best interests because of the deeply fucked up medical model images of disabled people (as "burdens", as "helpless", as objects of pity, etc) that are so prevalent in media and culture, completely failed to be fed back...
The statistics quoted on hate crime (which were shocking enough - for example, that 1/3 of people with learning impairments experience harassment every week, and that 47% of physically impaired people had either been physically abused or seen fellow disabled people get physically abused) were also ones which came from charities (Mencap and Scope, in the above examples), rather than from organisations of disabled people...
Some good points were, however, allowed to filter through to the conference, including the way that the mental health system pathologises "service users" for reporting hate crime, the fact that some disabled people may perpetrate hate crime against others (often due to "divide and rule" hierarchies of impairment), and the prevalence of perceptions of disabled people as either "socially deviant" or "vulnerable and childlike" - although some truly idiotic ideas were also not only expressed, but seemingly approved of by large numbers of delegates - such as "punishing" perpetrators of hate crimes against disabled people by forcing them to "work with" disabled people... Yeah, and punish rapists by employing them as rape crisis counsellors while you're at it (that was sarcasm, for anyone who isn't good with that)...
Similarly, some good points were allowed to come through about young disabled people and their rights to full citizenship, such as the taboo subject of relationships and the assumption of asexuality, the need for young disabled people to meet older disabled role models, and that non-disabled parents of young disabled people are often potential opposers of their children's rights, and thus it is crucial that they be educated to be allies, arguably from as early as antenatal classes if a diagnosis of impairment exists at that stage (something obviously very strongly felt in the shadow of the Katie Thorpe case).
However, if my experience was in any way typical, the more radical ideas raised in the small groups (i.e., the ones which directly threatened the government's spin of itself as safeguarding and upholding disability rights) were all probably discreetly not given a platform. The notes made by the "official" notetakers at each table were collected, supposedly to be used in consultation, but the cynic in me finds that extremely doubtful...
It was however heartening that there was a general recognition (at least among those present who i had the opportunity to hear the views of) that "Equality 2025" is a bad joke - the DDA was supposed to give disabled people equal rights in 1995, 12 years later in 2007 it clearly hasn't, and now we are being promised "Equality 2025" - a wait of another 18 years!? (Apart from the fact that "Equality 2025" sounds like some strange socialist space opera - a Cold War Russian equivalent to Star Trek, perhaps?) We need equality now.
(Hmmm... possible disability movement counter-ODI logo/slogan - the Equality 2025 logo, with the pink and blue changed to red and black, and "2025" changed to "NOW"... anyone got photoshop skillz? Not quite sure what "Working with government for disability equality" should be changed to tho...)
(edit: i can't find the Equality 2025 logo online, although you can see a hand-drawn version of it in one of the pics below... will scan it if i get a chance...)
Non-content-related stuff: the free food was pretty good (one decent veggie option, although there was nothing vegan... tho what the so-called "potatoes" actually were, i don't know... but very, very nice coffee cake), and we (the Birmingham Coalition of Disabled People/Housing4All posse) stocked up very well on discarded notepads and pencils afterwards... there was some positive networking for Housing4All as well, despite us running out of leaflets :)
Accessibility wise things were as good as could be reasonably expected, with sign language interpreters (and a spoken English interpreter for the speaker who was a BSL user), palantype, an audio loop and good physical access, although there was one amusing moment when the palantypist mis-typed "neurodiverse" as "neuroadverse people"... ;)
There was also a rather amazing woman (not really sure if her role was part of the accessibility, or just to provide something visual) whose job was apparently to create a cartoon representation of all the discussions on huge pieces of paper pinned to the wall, in a brilliant Tony Hart stylee using huge paint pens:
There were points at which i found myself experiencing a strange cognitive dissonance, thinking "what am i, as a notorious anarchist who thinks government is the problem, doing here at a government consultation event?". I think this is one of those examples of intersectionalities of movements creating strange bedfellows - one particularly strange position i found myself in was that of demanding stronger anti-discrimination legislation, including criminal punishments for businesses such as losing their licences for breaking equal access laws - when normally i would be totally against the whole concepts of a criminal law system and of licensing... this is definitely a whole area which i need to explore more ideologically and try to put together a more "joined-up" perspective on...
One thing that kind of pissed me off (although i don't know what people with learning disabilities which affect verbal comprehension would think of it) was the IMO quite patronising tone of the "easy-to-understand" documents in the free pack accompanying the presentations. Much worse than patronising tone (which is, of course, subjective), however, is the blatant distortion of the first sentence of the document accompanying "Hot Topic presentation 1 - Independent Living and User-led Organisations" - "The government has a big plan for disabled people's lives to be equal to other people's lives" - referring to the Improving Life Chances of Disabled People" document - basically portraying the government as the author of the disability rights movement, instead of the primary institution that we have had to fight against to achieve rights, and which still ensures through all kinds of institutional disablism (in housing provision, in the benefits system, in employment legislation, in the "justice" system, in NHS hospitals, in segregated education, in its failure to ratify the UN Convention, etc, etc) that disabled people's lives are not "equal to other people's lives"...
Despite the obvious bullshit government spin and unlikeliness of anything coming out of this (except further flashy-but-meaningless "consultations"), this still felt to me like a positive event - although it might be that, because of my desperate desire to be involved in anything at all disability-related, i have somewhat lower standards for a government convention on disability than i do for, say, one on climate change - networking was good, there were plenty of radical people scattered among the delegates (and even the speakers/Equality 2025 committee members), and i got the same buzz i always get just from seeing and being around a large group of disabled people in one place at the same time (the variety of represented impairments was, IMO, to be commended, although there was probably an (extremely common) under-representation of people with learning disabilities, and the self-fulfilling perception of disability organisations as only for, or dominated by, wheelchair users to the exclusion of other impairment groups was at least mentioned).
It is still an absolute necessity for the disabled people's movement to fight for disability rights now, and not fall for government promises to sort it out over the next X number of years, however...
You can write to Equality 2025 c/o The Secretariat, 6th Floor, The Adelphi, 1-11 John Adam Street, London WC2N 6HT, or telephone them on 0845 460 2025 (UK)...
The conference format involved presentations from speakers (some followed by question-and-answer sessions), alternating with splitting into small groups (arranged around numbered tables), each with a "facilitator", to discuss different aspects of the key issues and then choose one person to feed back to the whole conference. It was interesting to observe the similarities and differences to (supposedly) non-hierarchical activist gatherings such as the Camp for Climate action gathering i went to last week, and some of the terms and concepts which seem to have been co-opted by government from new social movements (creating a kind of pseudo-non-hierarchical conference style?)...
One of the 4 "Hot Topics" of the conference was the government's (supposed) aim to set up "User Led Organisations", modelled on the existing Centres for Independent Living, in every area of Britain, and using money from a Department of Health "development fund". Of course, from a cynic's point of view, this is questionable considering that existing CILs are being closed down, struggling to survive funding cuts, or being seriously compromised (arguably even corrupted) by conditional funding from "charitable" sources... A word mentioned several times, but not really clarified, was "businesslike" - seemingly implying that one intent was that the new ULOs should in some way act more like corporations.
The lack of consensus about what the phrase "Independent Living" really means (both in the eyes of the government and in reality), and about what a "User Led Organisation" should look like, was also discussed - some activists challenging even the use of the word "user", and some criticising the implicit medical-model thinking of the funding coming from the DoH. The urban/rural divide also came up, with an interesting (but possibly difficult to implement) idea of a "mobile CIL" that could visit isolated disabled people in rural areas.
Second was the United Nations Convention on Disability Rights. Interestingly, the description of rights given by the presenters in describing the UN Convention was a fundamentally moral conception of rights - i.e., rights as "things" which exist independently of laws and governments (or which "every human has and which cannot be taken away", as one speaker put it), but which can be either upheld or not upheld by laws - a liberal conception which, IMO, somewhat fails to recognise the reality of the lives of people living in the many, many situations (such as disability institutions) where they don't "have" human rights in any meaningful way, regardless of whether they morally or theoretically have those rights. Possibly this is the philosophical question of the difference between an "is" and an "ought"?
The UNCDR is very clearly rooted in the social model of disability - containing such rights as inclusive education, family life, the right to choose where to live, to participate on an equal level in public and political organisations, and to have organisation of disabled people. As such it stands in clear contrast to the DDA 1995 and the current Single Equality Bill, which are both essentially based around a medical model definition of "disability". The UK has signed but not ratified the UNCDR - despite the fact that countries such as Cuba, Jamaica and India have ratified the convention...
The remaining "Hot Topics" were young disabled people's transition to adulthood and disability-related hate crime. Annoyingly, each table was only given the opportunity to discuss one of those issues (ours was given hate crime), and then the tables' responses were read out in indiscriminate order, mixing up the responses to both topics. The person chosen to feed back from our table was a non-disabled spokesperson for Scope and RNIB (note that these charities are now trying to portray themselves as campaigning for equality, while still being controlled by non-disabled people and practicing segregation) - my points about institutional disablism being a root of anti-disabled hate crime, and things being done to disabled people (such as locking them up and denying them rights as basic as the right to choose what to eat, when to go to bed or when to go to the toilet, cutting out their organs without their consent, or killing them) which would be universally considered hate crimes if they were done to any other minority group, being considered to be acts of "care" and done in our best interests because of the deeply fucked up medical model images of disabled people (as "burdens", as "helpless", as objects of pity, etc) that are so prevalent in media and culture, completely failed to be fed back...
The statistics quoted on hate crime (which were shocking enough - for example, that 1/3 of people with learning impairments experience harassment every week, and that 47% of physically impaired people had either been physically abused or seen fellow disabled people get physically abused) were also ones which came from charities (Mencap and Scope, in the above examples), rather than from organisations of disabled people...
Some good points were, however, allowed to filter through to the conference, including the way that the mental health system pathologises "service users" for reporting hate crime, the fact that some disabled people may perpetrate hate crime against others (often due to "divide and rule" hierarchies of impairment), and the prevalence of perceptions of disabled people as either "socially deviant" or "vulnerable and childlike" - although some truly idiotic ideas were also not only expressed, but seemingly approved of by large numbers of delegates - such as "punishing" perpetrators of hate crimes against disabled people by forcing them to "work with" disabled people... Yeah, and punish rapists by employing them as rape crisis counsellors while you're at it (that was sarcasm, for anyone who isn't good with that)...
Similarly, some good points were allowed to come through about young disabled people and their rights to full citizenship, such as the taboo subject of relationships and the assumption of asexuality, the need for young disabled people to meet older disabled role models, and that non-disabled parents of young disabled people are often potential opposers of their children's rights, and thus it is crucial that they be educated to be allies, arguably from as early as antenatal classes if a diagnosis of impairment exists at that stage (something obviously very strongly felt in the shadow of the Katie Thorpe case).
However, if my experience was in any way typical, the more radical ideas raised in the small groups (i.e., the ones which directly threatened the government's spin of itself as safeguarding and upholding disability rights) were all probably discreetly not given a platform. The notes made by the "official" notetakers at each table were collected, supposedly to be used in consultation, but the cynic in me finds that extremely doubtful...
It was however heartening that there was a general recognition (at least among those present who i had the opportunity to hear the views of) that "Equality 2025" is a bad joke - the DDA was supposed to give disabled people equal rights in 1995, 12 years later in 2007 it clearly hasn't, and now we are being promised "Equality 2025" - a wait of another 18 years!? (Apart from the fact that "Equality 2025" sounds like some strange socialist space opera - a Cold War Russian equivalent to Star Trek, perhaps?) We need equality now.
(Hmmm... possible disability movement counter-ODI logo/slogan - the Equality 2025 logo, with the pink and blue changed to red and black, and "2025" changed to "NOW"... anyone got photoshop skillz? Not quite sure what "Working with government for disability equality" should be changed to tho...)
(edit: i can't find the Equality 2025 logo online, although you can see a hand-drawn version of it in one of the pics below... will scan it if i get a chance...)
Non-content-related stuff: the free food was pretty good (one decent veggie option, although there was nothing vegan... tho what the so-called "potatoes" actually were, i don't know... but very, very nice coffee cake), and we (the Birmingham Coalition of Disabled People/Housing4All posse) stocked up very well on discarded notepads and pencils afterwards... there was some positive networking for Housing4All as well, despite us running out of leaflets :)
Accessibility wise things were as good as could be reasonably expected, with sign language interpreters (and a spoken English interpreter for the speaker who was a BSL user), palantype, an audio loop and good physical access, although there was one amusing moment when the palantypist mis-typed "neurodiverse" as "neuroadverse people"... ;)
There was also a rather amazing woman (not really sure if her role was part of the accessibility, or just to provide something visual) whose job was apparently to create a cartoon representation of all the discussions on huge pieces of paper pinned to the wall, in a brilliant Tony Hart stylee using huge paint pens:
There were points at which i found myself experiencing a strange cognitive dissonance, thinking "what am i, as a notorious anarchist who thinks government is the problem, doing here at a government consultation event?". I think this is one of those examples of intersectionalities of movements creating strange bedfellows - one particularly strange position i found myself in was that of demanding stronger anti-discrimination legislation, including criminal punishments for businesses such as losing their licences for breaking equal access laws - when normally i would be totally against the whole concepts of a criminal law system and of licensing... this is definitely a whole area which i need to explore more ideologically and try to put together a more "joined-up" perspective on...
One thing that kind of pissed me off (although i don't know what people with learning disabilities which affect verbal comprehension would think of it) was the IMO quite patronising tone of the "easy-to-understand" documents in the free pack accompanying the presentations. Much worse than patronising tone (which is, of course, subjective), however, is the blatant distortion of the first sentence of the document accompanying "Hot Topic presentation 1 - Independent Living and User-led Organisations" - "The government has a big plan for disabled people's lives to be equal to other people's lives" - referring to the Improving Life Chances of Disabled People" document - basically portraying the government as the author of the disability rights movement, instead of the primary institution that we have had to fight against to achieve rights, and which still ensures through all kinds of institutional disablism (in housing provision, in the benefits system, in employment legislation, in the "justice" system, in NHS hospitals, in segregated education, in its failure to ratify the UN Convention, etc, etc) that disabled people's lives are not "equal to other people's lives"...
Despite the obvious bullshit government spin and unlikeliness of anything coming out of this (except further flashy-but-meaningless "consultations"), this still felt to me like a positive event - although it might be that, because of my desperate desire to be involved in anything at all disability-related, i have somewhat lower standards for a government convention on disability than i do for, say, one on climate change - networking was good, there were plenty of radical people scattered among the delegates (and even the speakers/Equality 2025 committee members), and i got the same buzz i always get just from seeing and being around a large group of disabled people in one place at the same time (the variety of represented impairments was, IMO, to be commended, although there was probably an (extremely common) under-representation of people with learning disabilities, and the self-fulfilling perception of disability organisations as only for, or dominated by, wheelchair users to the exclusion of other impairment groups was at least mentioned).
It is still an absolute necessity for the disabled people's movement to fight for disability rights now, and not fall for government promises to sort it out over the next X number of years, however...
You can write to Equality 2025 c/o The Secretariat, 6th Floor, The Adelphi, 1-11 John Adam Street, London WC2N 6HT, or telephone them on 0845 460 2025 (UK)...
Wednesday, October 31, 2007
Aspie Quiz
So, there is an "Aspie Quiz" here...
After filling in the information they wanted from me (year and month of birth, "biological gender", the answers "No", "Suspect/self-diagnosed" or "Professional diagnosis" for a number of neurological or psychiatric diagnoses, country, ethnic ancestry, whether i grew up in my biological family, and (very approximate) income band of myself and my parents) and answering the quiz as honestly as i could, i got this result:
and the comment "You are very likely an Aspie"...
(i presume that the results and the comment recieved afterwards are not influenced by the diagnostic information submitted beforehand, and that the correlation between people's diagnoses and their scores on the quiz are what is being researched here...)
Someone on a disability forum, who has a physical impairment but, supposedly, not AS, described hirself as "freaked" by how similar hir scores were to mine. I'm still trying to work out whether that's indicative of inter-impairment prejudice or of distrust of the quiz's accuracy... however, i couldn't help responding with the chant from Tod Browning's Freaks:
Gooble gobble, gooble gobble
We accept you, we accept you
Gooble gobble, gooble gobble
One of us, one of us... ;)
The questions of the quiz were something of a mixed bag: the quiz states "Some of the questions in this quiz are phrased so that an Aspie answer is 'yes,' some so that an Aspie answer is 'no.' A few of the questions may be pure research questions that may or may not be connected to autism spectrum." Most were easy enough for me to work out whether the "stereotypical Aspie" answer would be "yes" or "no", although some seemed very random. Quite a few started with "Do others think you are..." or "Do people say (x) about you?", which, although they did refer to things often said or thought about autistic people, is potentially problematic because, essentially, it's evaluating non-autistic people's assumptions about autistic people rather than autistic people themselves.
Some i found interesting or odd:
Are you gracious about criticism, correction and direction?
I couldn't really even work out what "gracious" in this context could mean; therefore, i answered "don't know"...
Do you have difficulties judging distances, height, depth or speed?
This was one where i couldn't work out whether the "Aspie answer" would be yes or no. I'm generally pretty good at judging this kind of stuff, although i've never really tried to judge speed.
Do you dislike it when people stamp their foot in the floor?
Do you enjoy walking on your toes?
Do you enjoy watching rodeo-riders?
Do you feel good in mist or fog?
Do you enjoy digging?
Do you enjoy lying on the ground looking at the sky?
Do you sometimes have an urge to jump over things?
and quite a few other, similar questions about fairly specific physical activities or sensations, that i wasn't really able to identify as autism-related or not... also in a lot of cases things that would be affected quite a lot by whether people have physical impairments, as well as potentially by cultural/upbringing issues (they remind me of the sort of questions that often come up in gender identity quizzes, which seem to me to have more to do with social roles than anything inherent to a person)...
Do you have a poor sense of how much pressure to apply when doing things with your hands?
Again, one i wasn't sure how to answer, or what relevance it had to autism (dyspraxia, quite possibly, but, oddly, dyspraxia wasn't one of the diagnoses in the pre-quiz checklist).
Do you have a habit of repeating your own or others' last words, internally or out loud (echolalia)?
This isn't quite what i understood echolalia to mean - i had thought it meant speaking in memorised/mimicked phrases rather than words chosen spontaneously (rather as parrots are thought to). (I have met at least two people with "low-functioning autism" labels whose only verbal communication was phrases heard and memorised from films/TV programmes... one roughly 12 year old kid used to repeat "Heil Hitler!" (presumably taken from some WWII film) while with his (black) carer, which was... kind of scary, although i don't think he knew what it meant). Wikipedia, however, recognises both "immediate echolalia" (the quiz's definition) and "delayed echolalia" (my definition)... but putting merely (echolalia) after a brief description of immediate echolalia seems, IMO, a bit misleading.
(It's also interesting to note that, by Wikipedia's definition of immediate echolalia, it's something i've often heard neurotypical people do, particularly in public debate/interrogation contexts, without thinking of it as echolalia.)
Are you hypo- or hypersensitive to physical pain, or even enjoy some types of pain?
Hmmm, possible link between AS and masochism? Also interesting in the context of much supposedly "self-injurious" behaviour and its pathologisation...
Do you mistake noises for voices?
I do, but had never thought of that as an AS thing...
Do you tend to look a lot at people you like and little or not at all at people you dislike?
Again, not sure if the "AS" answer is yes or no for this one...
Do you wobble your hand slightly to indicate so-so?
Eh? Again kind of confused by this one - presumably he's refering to a common gesture, either among Aspies or among neurotypicals, but i can't visualise it (or really know what "so-so" means) - then again, the creator of this quiz, Leif Ekblad, is seemingly from Sweden, so it might be a culturally specific (non-UK) thing...
Are you sometimes fearless in situations that can be dangerous?
Are you sometimes afraid in safe situations?
I've often observed that i am afraid of huge numbers of things that nearly everyone isn't afraid of, yet not at all afraid of nearly all the stereotypical "things that everyone is afraid of" (creatures like snakes or spiders, walking alone at night, etc).
Has it been harder for you to make it on your own, than it seems to be for most others of the same age?
That one was a very hard one for me to answer - if you asked me it at 17, the answer would be a resounding "no", as i was living on my own, lying about my age to rent from a landlord, while juggling part-time jobs, blagging the benefit system and doing A-levels at that time, but now that i'm 25, with a first-class degree, but unable to get any sort of job or (often) make ends meet, and probably with less social and relationship experience than most 17 year olds, i'd probably have to say "yes"... but the tense of the question makes it very difficult for me to answer "correctly"...
Do you often don't know where to put your arms?
I found this one amusing in the light of Do you feel an urge to correct people with accurate facts, numbers, spelling, grammar etc., when they get something wrong? ;) (probably due to the person who wrote it most likely having English as a second language, tho)
Another potential problem with the quiz (and something that might make a neurotypical person (with a few mild Aspie-ish traits)'s score very similar to an unquestionably autistic person's) is the answering system, where for each question you have to check the box for either "don't know", "no/never", "a little" or "yes/often". Each person's definition of "a little" or "often" will vary, and people with the same actual frequency of a trait or behaviour might check different boxes according to their interpretation of language, while conversely people with very different actual frequencies might check the same box.
I also don't really understand the labels like "talent" and "hunting" around the edges of the image (or what the spider-web graph actually means, and why that presentation was chosen, rather than, say, a system of percentages)...
However, the thing that i find most suspicious about this research is that an assumption is that "autism" and "Asperger's" are separate diagnoses, and this quiz is specifically aimed at "Aspies", rather than autistic people. The autism/Asperger's distinction, like the "high functioning"/"low functioning" distinction, is one which is based on highly arbitrary criteria, not meaningfully upheld by any evidence, and is most often used within the autism community as a "divide and rule" tactic (often accompanied by some form or other of separatism). Sadly this is very prevalent among online autistic writers, particularly those who want to argue that (their type of) autism is not a "disability" (even articles like this one, while ostensibly about discrediting arbitrary distinctions between "Asperger's" and "autism", still use the "functioning level" concept normatively, and try to marginalise or deny the lived realities of those labelled "low functioning") (and it's also worth noting that those who try to argue that autism "is not necessarily a disability" often have unexamined negative attitudes to disabilities/impairments other than autism, and their choice of language betrays their lack of understanding of the social model of disability).
The site on which the quiz is hosted is also the home of the Neanderthal theory (which seems to use some information gathered from the Aspie quiz), which IMO is scientifically dodgy for several reasons, most notably its assumption that autism is more prevalent in people of European ancestry (while autism diagnosis rates are certainly higher in people of European ancestry, that can just as if not more plausibly be blamed on culturally specific diagnostic criteria and the fact that the concepts of "autism" and "Asperger's" as diagnoses/descriptions, as opposed to the conditions/phenotypes themselves, originate in Western European medical discourse), and also the idea that Homo (sapiens) neanderthalensis was "cold-adapted" and H. s. sapiens "warm-adapted", so therefore "autistic people being more cold-adapted" than non-autistic people" is evidence for autism coming from Neanderthal ancestry, when i'm an autistic person from Western Europe and i'm significantly less "cold-adapted" than any neurotypical person i know - in fact, my build, metabolism and sensory perceptions all point to me being adapted, if anything, to a hot, dry, semi-desert climate... which is the climate H. s. sapiens evolved in (and other things about me, like my unusually gracile skeleton for a male human, are the exact opposite of H. (s.) neanderthalensis)...
It also embraces some of the racist bullshit theories about Africans being on average "less intelligent" and "more sexually active" than Europeans and other races, which have recently been brought back into the limelight by Dr James Watson, but which are (much like the autism/Asperger's distinction, in fact) based pretty much entirely on arbitrarily defined cultural factors and not on any truly scientific evidence (although i think there is a biodiversity/disability-rights based argument that it shouldn't make a difference for true egalitarians if one "race" was in fact "less intelligent" than another... but that's for another post)
(There is significant evidence that Neanderthals and modern humans did interbreed with each other, and i'm willing to accept that, if Neanderthals (or any other archaic human (sub)species) were alive today, then, by H. s. sapiens standards, they almost certainly wouldn't be neurotypical... but that's also for another post...)
The site also has a large link list to other Asperger's/autism sites, several of which (such as Aspies for Freedom) arguably promote functioning-label hierarchies and/or Aspergian separatism (although it also links to plenty of others, such as Ballastexistenz and Laurentius Rex who very explicitly don't).
I get a bit nervous about labelling Aspie sites as "separatist", because it's often more complex than that, and the separatism is often unconscious or not fully explicitly stated (in which there's probably an irony), and it can be a bit of a straw man (rather like the "radical feminists think all penetrative sex is oppression" straw man), but the trouble with straw men is that, once set up, they have a tendency to become "real"... I'm not going to state definitively that i think Lief Ekblad is prejudiced against "non-Aspie" autistics, or that he's a separatist, but i do think there are some rather arbitrary and unsupported distinctions in his research and his theory that can lead to separatism and/or the construction of hierarchies of impairment which contribute to divide and rule tactics.
I think there is (or can be) value in these kinds of research quizzes, both for the person taking the "test" and for the researcher, but i think it's always important to be critical and analytical of both the answers and the questions...
After filling in the information they wanted from me (year and month of birth, "biological gender", the answers "No", "Suspect/self-diagnosed" or "Professional diagnosis" for a number of neurological or psychiatric diagnoses, country, ethnic ancestry, whether i grew up in my biological family, and (very approximate) income band of myself and my parents) and answering the quiz as honestly as i could, i got this result:
and the comment "You are very likely an Aspie"...
(i presume that the results and the comment recieved afterwards are not influenced by the diagnostic information submitted beforehand, and that the correlation between people's diagnoses and their scores on the quiz are what is being researched here...)
Someone on a disability forum, who has a physical impairment but, supposedly, not AS, described hirself as "freaked" by how similar hir scores were to mine. I'm still trying to work out whether that's indicative of inter-impairment prejudice or of distrust of the quiz's accuracy... however, i couldn't help responding with the chant from Tod Browning's Freaks:
Gooble gobble, gooble gobble
We accept you, we accept you
Gooble gobble, gooble gobble
One of us, one of us... ;)
The questions of the quiz were something of a mixed bag: the quiz states "Some of the questions in this quiz are phrased so that an Aspie answer is 'yes,' some so that an Aspie answer is 'no.' A few of the questions may be pure research questions that may or may not be connected to autism spectrum." Most were easy enough for me to work out whether the "stereotypical Aspie" answer would be "yes" or "no", although some seemed very random. Quite a few started with "Do others think you are..." or "Do people say (x) about you?", which, although they did refer to things often said or thought about autistic people, is potentially problematic because, essentially, it's evaluating non-autistic people's assumptions about autistic people rather than autistic people themselves.
Some i found interesting or odd:
Are you gracious about criticism, correction and direction?
I couldn't really even work out what "gracious" in this context could mean; therefore, i answered "don't know"...
Do you have difficulties judging distances, height, depth or speed?
This was one where i couldn't work out whether the "Aspie answer" would be yes or no. I'm generally pretty good at judging this kind of stuff, although i've never really tried to judge speed.
Do you dislike it when people stamp their foot in the floor?
Do you enjoy walking on your toes?
Do you enjoy watching rodeo-riders?
Do you feel good in mist or fog?
Do you enjoy digging?
Do you enjoy lying on the ground looking at the sky?
Do you sometimes have an urge to jump over things?
and quite a few other, similar questions about fairly specific physical activities or sensations, that i wasn't really able to identify as autism-related or not... also in a lot of cases things that would be affected quite a lot by whether people have physical impairments, as well as potentially by cultural/upbringing issues (they remind me of the sort of questions that often come up in gender identity quizzes, which seem to me to have more to do with social roles than anything inherent to a person)...
Do you have a poor sense of how much pressure to apply when doing things with your hands?
Again, one i wasn't sure how to answer, or what relevance it had to autism (dyspraxia, quite possibly, but, oddly, dyspraxia wasn't one of the diagnoses in the pre-quiz checklist).
Do you have a habit of repeating your own or others' last words, internally or out loud (echolalia)?
This isn't quite what i understood echolalia to mean - i had thought it meant speaking in memorised/mimicked phrases rather than words chosen spontaneously (rather as parrots are thought to). (I have met at least two people with "low-functioning autism" labels whose only verbal communication was phrases heard and memorised from films/TV programmes... one roughly 12 year old kid used to repeat "Heil Hitler!" (presumably taken from some WWII film) while with his (black) carer, which was... kind of scary, although i don't think he knew what it meant). Wikipedia, however, recognises both "immediate echolalia" (the quiz's definition) and "delayed echolalia" (my definition)... but putting merely (echolalia) after a brief description of immediate echolalia seems, IMO, a bit misleading.
(It's also interesting to note that, by Wikipedia's definition of immediate echolalia, it's something i've often heard neurotypical people do, particularly in public debate/interrogation contexts, without thinking of it as echolalia.)
Are you hypo- or hypersensitive to physical pain, or even enjoy some types of pain?
Hmmm, possible link between AS and masochism? Also interesting in the context of much supposedly "self-injurious" behaviour and its pathologisation...
Do you mistake noises for voices?
I do, but had never thought of that as an AS thing...
Do you tend to look a lot at people you like and little or not at all at people you dislike?
Again, not sure if the "AS" answer is yes or no for this one...
Do you wobble your hand slightly to indicate so-so?
Eh? Again kind of confused by this one - presumably he's refering to a common gesture, either among Aspies or among neurotypicals, but i can't visualise it (or really know what "so-so" means) - then again, the creator of this quiz, Leif Ekblad, is seemingly from Sweden, so it might be a culturally specific (non-UK) thing...
Are you sometimes fearless in situations that can be dangerous?
Are you sometimes afraid in safe situations?
I've often observed that i am afraid of huge numbers of things that nearly everyone isn't afraid of, yet not at all afraid of nearly all the stereotypical "things that everyone is afraid of" (creatures like snakes or spiders, walking alone at night, etc).
Has it been harder for you to make it on your own, than it seems to be for most others of the same age?
That one was a very hard one for me to answer - if you asked me it at 17, the answer would be a resounding "no", as i was living on my own, lying about my age to rent from a landlord, while juggling part-time jobs, blagging the benefit system and doing A-levels at that time, but now that i'm 25, with a first-class degree, but unable to get any sort of job or (often) make ends meet, and probably with less social and relationship experience than most 17 year olds, i'd probably have to say "yes"... but the tense of the question makes it very difficult for me to answer "correctly"...
Do you often don't know where to put your arms?
I found this one amusing in the light of Do you feel an urge to correct people with accurate facts, numbers, spelling, grammar etc., when they get something wrong? ;) (probably due to the person who wrote it most likely having English as a second language, tho)
Another potential problem with the quiz (and something that might make a neurotypical person (with a few mild Aspie-ish traits)'s score very similar to an unquestionably autistic person's) is the answering system, where for each question you have to check the box for either "don't know", "no/never", "a little" or "yes/often". Each person's definition of "a little" or "often" will vary, and people with the same actual frequency of a trait or behaviour might check different boxes according to their interpretation of language, while conversely people with very different actual frequencies might check the same box.
I also don't really understand the labels like "talent" and "hunting" around the edges of the image (or what the spider-web graph actually means, and why that presentation was chosen, rather than, say, a system of percentages)...
However, the thing that i find most suspicious about this research is that an assumption is that "autism" and "Asperger's" are separate diagnoses, and this quiz is specifically aimed at "Aspies", rather than autistic people. The autism/Asperger's distinction, like the "high functioning"/"low functioning" distinction, is one which is based on highly arbitrary criteria, not meaningfully upheld by any evidence, and is most often used within the autism community as a "divide and rule" tactic (often accompanied by some form or other of separatism). Sadly this is very prevalent among online autistic writers, particularly those who want to argue that (their type of) autism is not a "disability" (even articles like this one, while ostensibly about discrediting arbitrary distinctions between "Asperger's" and "autism", still use the "functioning level" concept normatively, and try to marginalise or deny the lived realities of those labelled "low functioning") (and it's also worth noting that those who try to argue that autism "is not necessarily a disability" often have unexamined negative attitudes to disabilities/impairments other than autism, and their choice of language betrays their lack of understanding of the social model of disability).
The site on which the quiz is hosted is also the home of the Neanderthal theory (which seems to use some information gathered from the Aspie quiz), which IMO is scientifically dodgy for several reasons, most notably its assumption that autism is more prevalent in people of European ancestry (while autism diagnosis rates are certainly higher in people of European ancestry, that can just as if not more plausibly be blamed on culturally specific diagnostic criteria and the fact that the concepts of "autism" and "Asperger's" as diagnoses/descriptions, as opposed to the conditions/phenotypes themselves, originate in Western European medical discourse), and also the idea that Homo (sapiens) neanderthalensis was "cold-adapted" and H. s. sapiens "warm-adapted", so therefore "autistic people being more cold-adapted" than non-autistic people" is evidence for autism coming from Neanderthal ancestry, when i'm an autistic person from Western Europe and i'm significantly less "cold-adapted" than any neurotypical person i know - in fact, my build, metabolism and sensory perceptions all point to me being adapted, if anything, to a hot, dry, semi-desert climate... which is the climate H. s. sapiens evolved in (and other things about me, like my unusually gracile skeleton for a male human, are the exact opposite of H. (s.) neanderthalensis)...
It also embraces some of the racist bullshit theories about Africans being on average "less intelligent" and "more sexually active" than Europeans and other races, which have recently been brought back into the limelight by Dr James Watson, but which are (much like the autism/Asperger's distinction, in fact) based pretty much entirely on arbitrarily defined cultural factors and not on any truly scientific evidence (although i think there is a biodiversity/disability-rights based argument that it shouldn't make a difference for true egalitarians if one "race" was in fact "less intelligent" than another... but that's for another post)
(There is significant evidence that Neanderthals and modern humans did interbreed with each other, and i'm willing to accept that, if Neanderthals (or any other archaic human (sub)species) were alive today, then, by H. s. sapiens standards, they almost certainly wouldn't be neurotypical... but that's also for another post...)
The site also has a large link list to other Asperger's/autism sites, several of which (such as Aspies for Freedom) arguably promote functioning-label hierarchies and/or Aspergian separatism (although it also links to plenty of others, such as Ballastexistenz and Laurentius Rex who very explicitly don't).
I get a bit nervous about labelling Aspie sites as "separatist", because it's often more complex than that, and the separatism is often unconscious or not fully explicitly stated (in which there's probably an irony), and it can be a bit of a straw man (rather like the "radical feminists think all penetrative sex is oppression" straw man), but the trouble with straw men is that, once set up, they have a tendency to become "real"... I'm not going to state definitively that i think Lief Ekblad is prejudiced against "non-Aspie" autistics, or that he's a separatist, but i do think there are some rather arbitrary and unsupported distinctions in his research and his theory that can lead to separatism and/or the construction of hierarchies of impairment which contribute to divide and rule tactics.
I think there is (or can be) value in these kinds of research quizzes, both for the person taking the "test" and for the researcher, but i think it's always important to be critical and analytical of both the answers and the questions...
Sunday, July 1, 2007
Human rights? What human rights?
I'm so utterly shocked and disgusted at this that i'm having trouble processing it...
It appears that "care homes" (Orwell must be spinning in his grave at that phrase) are exempt from EU human rights legislation if they are run by private companies rather than by the state: therefore, their residents effectively have no legally protectable human rights...
Now, i'm an incredibly cynical anarchist. I probably shouldn't actually be shocked at this. "Legislation Fails To Protect Poor People: Shocker!" But somehow i am. Possibly it's because one of the things i've had in my head for quite a while is that if "care homes" and similar institutions were actually assessed by the same "human rights" standards as, say, state regimes in African or South American countries, they would be exposed as guilty of violations that even a Mugabe or a Pinochet would have rejected as far too extreme to even get their armies to enforce. I don't believe there's ever been a state, however brutal, which has even tried to legislate when its citizens are or are not allowed to go to the toilet, for example.
Before i identified as a disabled person, i tried working in one of those places once (i did one shift). It felt like being a concentration camp guard. I still torture myself with guilt occasionally about having, even incredibly briefly, held a position of "staff" in such an institution. Thinking about that makes me feel like i have absolutely no right to be part of the disability movement.
I'm trying to piece together a more general political framework for this - it appears that, effectively, the Human Rights Act protects people's human rights against the state (seemingly including local government, so council-run institutions should still be within its orbit), but not against any non-state entity, whether charity, co-operative or corporation - so, anything that is not the state can violate people's human rights as much as it wants to, and have impunity as long as those violations are not technically illegal under any other law (and i bet that there are "exemptions" for institutions for disabled people from laws like those against involuntary detention, or false imprisonment, or whatever it's actually called (hungry, hungover, correct words eluding me)).
Something NEEDS to be done about this...
(really frustratingly, i've tried to send a message to the DAN mailing list about this, and some weird bug in my email program that keeps telling me i haven't filled in the "To:" field, even when i've put other addresses in it in addition to the group one, is preventing me...)
Also i think it's notable that, altho Bert Massie is quoted in the Guardian article, this is primarily presented as being about "elderly people" - who, it seems, are not "disabled" according to journalistic terminology, and all the younger disabled people in institutions might as well not exist... another example of the public perception that such institutions are effectively sopme nice, fluffy, "restful" natural-end-of-life thing, confined to one life stage, and not institutions for the oppression of whole sectors of the population, defined (regardless of age) by lack of certain (fairly arbitrary) mental or physical abilities.
Really really hungry. Losing coherence. Need to stop blogging and eat now...
post-food edit (i think i'll actually leave that last sentence in, cos it's sort of an impairment thing, and i find it amusing) - the other thing that has an interesting irony about this is that it's only come to the Law Lords when someone has been kicked out of a "home" - i.e., it was the eviction of the 83-year-old resident from the home that was the potential "human rights violation", not her having been put, most likely without her consent, in the "home" in the first place...
It appears that "care homes" (Orwell must be spinning in his grave at that phrase) are exempt from EU human rights legislation if they are run by private companies rather than by the state: therefore, their residents effectively have no legally protectable human rights...
Now, i'm an incredibly cynical anarchist. I probably shouldn't actually be shocked at this. "Legislation Fails To Protect Poor People: Shocker!" But somehow i am. Possibly it's because one of the things i've had in my head for quite a while is that if "care homes" and similar institutions were actually assessed by the same "human rights" standards as, say, state regimes in African or South American countries, they would be exposed as guilty of violations that even a Mugabe or a Pinochet would have rejected as far too extreme to even get their armies to enforce. I don't believe there's ever been a state, however brutal, which has even tried to legislate when its citizens are or are not allowed to go to the toilet, for example.
Before i identified as a disabled person, i tried working in one of those places once (i did one shift). It felt like being a concentration camp guard. I still torture myself with guilt occasionally about having, even incredibly briefly, held a position of "staff" in such an institution. Thinking about that makes me feel like i have absolutely no right to be part of the disability movement.
I'm trying to piece together a more general political framework for this - it appears that, effectively, the Human Rights Act protects people's human rights against the state (seemingly including local government, so council-run institutions should still be within its orbit), but not against any non-state entity, whether charity, co-operative or corporation - so, anything that is not the state can violate people's human rights as much as it wants to, and have impunity as long as those violations are not technically illegal under any other law (and i bet that there are "exemptions" for institutions for disabled people from laws like those against involuntary detention, or false imprisonment, or whatever it's actually called (hungry, hungover, correct words eluding me)).
Something NEEDS to be done about this...
(really frustratingly, i've tried to send a message to the DAN mailing list about this, and some weird bug in my email program that keeps telling me i haven't filled in the "To:" field, even when i've put other addresses in it in addition to the group one, is preventing me...)
Also i think it's notable that, altho Bert Massie is quoted in the Guardian article, this is primarily presented as being about "elderly people" - who, it seems, are not "disabled" according to journalistic terminology, and all the younger disabled people in institutions might as well not exist... another example of the public perception that such institutions are effectively sopme nice, fluffy, "restful" natural-end-of-life thing, confined to one life stage, and not institutions for the oppression of whole sectors of the population, defined (regardless of age) by lack of certain (fairly arbitrary) mental or physical abilities.
Really really hungry. Losing coherence. Need to stop blogging and eat now...
post-food edit (i think i'll actually leave that last sentence in, cos it's sort of an impairment thing, and i find it amusing) - the other thing that has an interesting irony about this is that it's only come to the Law Lords when someone has been kicked out of a "home" - i.e., it was the eviction of the 83-year-old resident from the home that was the potential "human rights violation", not her having been put, most likely without her consent, in the "home" in the first place...
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