I've been meaning for a while to post about the changing "official" diagnostic criteria for autism. There are going to be some significant changes to how the autistic spectrum is going to be classified in the upcoming DSM-V, which i'm (probably) going to cover in another post, but what i'm specifically concerned with here is the "triad of impairments", held by many professionals and bodies including the UK's National Autistic Society to be the fundamental defining characteristics of autism as it is currently conceptualised (at least by the psychologist and neurologist establishment, if not actually by the autistic community).
As currently constituted, in its simplest form (as described on the NAS's "What is Autism?" page), the "triad" consists of:"difficulty with social communication", "difficulty with social interaction" and "difficulty with social imagination", while additional "related characteristics", not part of the "triad" itself (and hence presumably not seen as necessary for establishing an autistic spectrum diagnosis) include "love of routines", "sensory sensitivity", "special interests" and "learning disabilities". Essentially the same information is repeated in varying amounts of detail in several other pages on the NAS website, such as here and here, where it states "A range of other problems is also commonly found in association with the triad but the three basic impairments are the defining criteria." The origin of this definition is usually regarded as a 1979 paper by Lorna Wing (a co-founder of the NAS) and Judith Gould, as referenced here (Google cached HTML version of a Powerpoint file).
IMO, the existing "triad of impairments", even with the additional "related characteristics" (which seem somewhat awkwardly tacked on, as if those responsible were themselves aware that their "triad" was incomplete, and more elements were needed to fully describe autism as a meaningful entity), fails at defining autism both by inaccuracy in what it does contain and by failing to include many of what autistic people consistently report as among the most significant components of what distinguishes us from neurotypical people.
Firstly, while few if any autistic people would deny that they experience difficulties with "social communication" and "social interaction" (at least with neurotypicals!), that third element, "social imagination", is much more contentious. Many different autistic writers have challenged the assertion that autistics "lack imagination", both with regard to the "theory of mind" idea (which i won't directly take on here, but will link to excellent posts about by several other autistic bloggers... and of course this from the incomparable ISNT), and with regard to the allegation that autistic children do not "pretend play" or otherwise "imaginatively play" (many of my earliest memories are of pretending to be various animals or fictional characters for my childish amusement, and slightly later in childhood i concocted very many long and elaborate fantasies in which i "played" many different characters, often simultaneously - and i'm very far from the only autistic person i know with similar childhood experiences; in fact, i'd probably even say that, from the anecdotal evidence i've heard, autistic kids are more likely to be heavily into that sort of imaginative play than neurotypical kids!), while many would argue that other aspects of the "impairment of social imagination" as described by the NAS better fit into the categories of "social communication" and/or issues related to sensory processing (on which see a bit further on in this post).
Secondly, there are at least 2 very major aspects of autism as experienced by actual autistic people (each of which is probably as large in scope as the whole social interaction/communication/"imagination" triad put together) which Wing's triad leaves out altogether - namely, executive function issues (including the well-known "autistic inertia", which, while aspects of it are often mischaracterised as "social anxiety" (among other things), has nothing at all to do with social interaction, communication or imagination, at least as far as i can tell from my own experience of it) and sensory issues (including sensory overload and all the vastly varied and well-documented differences in sensory perception and processing between autistic and neurotypical people).
Thus, if i got to define the diagnostic criteria for autism, i would propose an almost entirely different triad of impairments, consisting of the following 3 components:
1) Communication impairment
This category, IMO, would include most if not all of the valid parts of all 3 elements of the traditional(?) triad (as i don't really see any meaningful dividing line between the categories of "social communication" and "social interaction", and most of the "social imagination" stuff that i actually agree exists also seems to be more about difficulties with (perhaps more receptive than expressive) communication than anything else). Other things it encompasses would include difficulties with use of language (such as my issues with pronouns), difficulties with interpreting and/or producing nonverbal forms of communication (gesture, vocal intonation, facial expressions, etc.), "literalism" and difficulties with understanding metaphors, euphemisms, etc., [others?]. As such, this is possibly the broadest or "biggest" category of autistic impairment, and certainly the one most traditionally identified as synonymous with autism to the extent that the other 2 major aspects often go completely unrecognised in both medical and popular discourses about autism, even though they are just as consistently reported within the autistic community.
2) Executive function issues
This includes a very large percentage of the "non-social" aspects of autism, one of the main ones being the aforementioned autistic inertia , but also things like difficulties with planning and organisation, time perception/time management, [others?] and, IMO, many of the traits often attributed to "attention deficit disorder", but which are found (in my experience) as much in autistic people as in people diagnosed with AD(H)D (although, of course, many people are increasingly diagnosed with both an autistic spectrum condition and AD(H)D, and just as many autistic people have some traits typical of AD(H)D, many people with AD(H)D have some autistic traits, meaning that there is a strong argument for regarding both as (at least sometimes) part of the same spectrum). I also suspect that much of the archetypal autistic "need for routine" and "ritual" repetition of acts or words/phrases is related to executive function issues as much as if not more than to communication impairment.
3) Sensory processing issues
As well as the obvious examples like sensory overload and sensitivities to specific stimuli (light, pressure, temperature, particular tastes or textures, etc.), this category would include a huge number of other sensory issues which, if not currently part of the diagnostic criteria for autism, are consistently associated with autism: synaesthesia, prosopagnosia ("faceblindness"), deficits or differences in proprioception (which leads to many of the issues with physical coordination which exist in the overlap between dyspraxia and autism), and [others?]. Some autistic people have argued that all of "autism" is ultimately due to sensory processing issues (for example, that the difficulties autistic people have with nonverbal communication actually result from atypical auditory and visual processing making perception and interpretation of it difficult, rather than from a difference in the communication-related parts of the brain per se), but to me that theory seems overly reductive, and there's also the issue that there are some autistic people who don't report sensory processing difficulties: however, while i'm not entirely convinced that every aspect of autism is sensory in nature, i do think it's a major and difficult-to-deny part of it.
All of these 3 aspects of autism demonstrably overlap with each other - for example, prosopagnosia and the notorious issues with "eye contact" (a bizarre phrase to me, with the image it conjures up of people's eyes actually touching each other...) are in the overlap between sensory processing and social communication, attention-deficit issues are very often an overlap between sensory processing and executive function, and difficulty with initiating conversation or other social interaction can be partly due to communication difficulties and partly due to inertia/executive function issues - but nonetheless i think most if not all widely-recognised aspects (or "symptoms" as the DSM types would doubtless say) of autism (that i can think of, anyway) fall into at least 1 of these 3 broad categories, or can be explained as an interaction between them.
(Of course, it's also very much worth pointing out that dividing autism up into any 3 "sections" is itself thoroughly arbitrary, and by conceptualising things slightly differently it could probably just as easily be split into 2, 4 or any other number of major aspects - it's purely because of the existing phrase "triad of impairments" that i've chosen 3 as the number to go with here...)
A problem with this suggested "New Triad" is that some autistic people may not have, or feel they have, all 3 aspects of impairment or difference. However, that's equally as true, if not more so, of the "original triad" - in particular, very few autistic people i know would agree with the "social imagination" element of it - and my guess would be that a substantial majority both of those "officially" diagnosed as on the autistic spectrum and of those self-identified as autistic - which it's worth pointing out are not identical sets, as both misdiagnosis of people with other conditions as autistic and missed diagnosis of very clearly autistic people exists - have at least some elements from each of these 3 categories.
Also, as is often neglected, the whole "autistic spectrum" is itself an ambiguous section taken out of the much, much larger spectrum of human neurodiversity, with very arbitrarily drawn boundaries, and with diagnostic categories generally considered both within and outside it overlapping with each other to the extent that the same person can easily get different diagnoses from different "experts", making it very much possible for people to have some autistic traits without "being autistic", or conversely to "be autistic" without having all of the recognised autistic traits. People with many other diagnoses such as dyspraxia, AD(H)D, "nonverbal learning disorder" or "semantic-pragmatic disorder" (the latter of which, as far as i understand it, seems essentially to mean "autism without significant sensory issues") may fit wholly, partially or not at all into any particular set of diagnostic criteria for autism. Therefore, if i got to set a "reasonable" diagnostic guideline, i would say that anyone who exhibits at least 2 of the 3 primary areas of impairment and is not better served by a different diagnosis can be classed as "autistic".
Of course, this raises the point that "autism", as a diagnostic entity, is almost certainly not one "thing", so much as a convenient term for a group of traits/symptoms that commonly go together, but may have separate origins and/or be present in different people for different reasons - probably including genetic causes in some cases, organic brain damage (occurring before, during or after birth) in others, and perhaps other factors as yet unidentified. (Some people have argued that, because of this, "autism" itself is not a particularly useful term - however, IMO, it describes a coherent enough set of characteristics to be useful regardless of the common etiology or otherwise of those characteristics, as well as being an important enough part of a very large number of people's identities that there would be massive (and justified) resistance to any attempt to scrap the term altogether.)
(I want to say something here about the common conception of diagnostic entities as somehow discrete and "immutable" natural categories, whereas in fact their existence is dependent on human identification and description, and therefore culture-bound, but don't seem to be able to express it in a way that doesn't sound more postmodernist/relativist than i'm happy with... maybe in another post...)
A corollary of this is that, because "autism" is not a fixed and immutable category but one which is defined by consensus, contains blurry edges and overlaps with others, there is probably no individual trait which every single autistic person has, and that possession of any particular individual "autistic trait" does not in any way imply possession of any other. However, i'm fairly confident that everyone or very nearly everyone who finds it useful to self-define as "autistic" will fit broadly into at least 2, and more likely than not all 3, of the categories outlined above. (If anyone feels otherwise, i very much welcome your thoughts on it...)
(Now i've written this, i'm wondering what sort of formal research/evidence would be necessary to try to turn it into some sort of formal proposal to the NAS (or whoever is the most appropriate "authority") to redefine the "triad" - if of course there's sufficient autistic-community support for it. Any ideas?)
Thursday, February 4, 2010
Monday, January 18, 2010
Active vs Passive Identities
The starting point of this is the conversation between me and Option C at this post, which went far enough from the post's original topic that i thought i ought to separate it. It's also inspired by the comment thread at this recent post about "passing" at Questioning Transphobia, which reminded me that, while i have written about "passing" before, there were aspects of it that i hadn't covered and that post, and i'd intended to return to those at some point. Some of those aspects will be covered here, while i may cover others that don't really fit in here in a future post (as i seem to say about everything...)
One of the difficulties that i see affecting a lot of conversations about identity issues is an often-unexamined failure to distinguish between two very different ways of seeing "identity" - namely, active identity (a person actively identifying as something) and passive identity (a person passively or unintentionally being identified as something by others). This can cause a lot of confusion, frustration and perception of things people have said as intolerant or offensive - when they weren't at all intended that way - because they used a "passive" rather than an "active" definition of a particular identity and were assumed to be using the other one.
The areas i've particularly noticed this happening (probably because they're my main areas of interest in identity politics - i'm sure it happens with regard to other areas of identity as well) are gender and disability, so that's (mostly) what i'm going to discuss here. In the gender context, it mostly comes up with regard to terms like "gender variant" or "gender non-conforming", and who is included within them. As i said in my first comment at Option C's post, i can easily see cases both of people who do not see themselves as "gender non-conforming", but are seen by others as such, and of the exact opposite - people who do see themselves as "gender non-conforming", but are not (or not always) seen as such by others - with myself as a probable example of the latter category. (An example of the former could be a transsexual woman with a "traditionally feminine" gender identity who does not "pass" as a cis woman, or a transsexual man with a "traditionally masculine" gender identity who does not "pass" as a cis man [see below for clarification of what "passing as" actually means... and yes, i'm aware that the terms "traditionally feminine" and "traditionally masculine" are problematic, but i couldn't think of a better way to express it in that sentence] - who would see themselves as conforming, internally if not externally, to the gender role/expression mostly associated to their sex identity, but would still be likely to be seen by others as having a "mixed" or "variant" gender expression. An example of the latter could be someone who - like myself - identifies as non-binary or genderqueer, but (in my case mostly unintentionally) happens to prefer to dress in a way that superficially fits with the gender role/expression mostly associated to their assigned or apparent sex - who would feel that they are not - or at least not intentionally - conforming to any gender, but would be seen as passably gender-normative by a casual observer.)
This reminds me of how, in my teenage years, i classified the people i knew into 4 categories with regard to the then-current "mainstream" teenage culture: 1) those who both wanted to conform and easily could conform to "mainstream" norms of dress, appearance, musical taste, speech patterns, etc., 2) those who didn't want to conform to the "mainstream", but could easily have conformed if they did want to, 3) those who wanted to conform, but couldn't conform easily or at all, for reasons beyond their control, and 4) those (like myself) who were likewise incapable of conforming, but had no desire to conform anyway. (It's interesting that, long before i was diagnosed as autistic or even knew about autism, i recognised that for me (as for some others i knew, a few of whom i wouldn't be at all surprised if they also turned out to be autistic), conformity to mainstream social norms was very much inherently impossible, while i could tell that many of the other "culturally alternative" young people i knew could, very easily, have been a part of the "mainstream" social group if they had wanted to.)
(Edit: I decided to make a Venn diagram to illustrate the above paragraph, just in case it wasn't clear.)
(2nd edit: i don't seem to be able to make the image any bigger in the post without making the text blurrier. If you click on the image, you can see it at full size, which is 950 pixels wide.)
Those people - the category 2 people - i admired, but also felt envious of, and even possibly a little bit bitter or resentful towards, because, even if i didn't want to take those opportunities, i was still keenly aware that they had social opportunities that i didn't and would never have - what i didn't then, but do now, recognise as privilege. The people who, however, i really felt bad for (in what was very probably, although unintentionally, a horribly patronising way), and thought had by far the worst deal in the whole "mainstream vs. alternative" teenage culture war, were the people in category 3 - those who shared the cultural values of the mainstream, but were not allowed into it (including many disabled, especially "learning-disabled", young people who were very much into the chart pop music, soap operas, clothing brands, etc. that were mainstream at the time, young people from ethnic groups with particularly strict parenting cultures whose parents wouldn't let them do the "mainstream" things their classmates did, those too poor to afford the requisite clothes and other trappings of conspicuous consumption to be accepted into the mainstream social groups, many fat or otherwise not-conventionally-attractive young women, and probably others). As someone firmly in category 4, it was hard not to see the people in category 2 as suffering from some sort of "false consciousness", and to think that they would be much better off if they could view the mainstream culture more critically and move into category 4 (where they would also be accepted by at least some of those in category 3) - so i can easily relate to, if not agree with, the same attitude expressed (among other examples) by radical feminists who argue that all women who put effort into "feminine" gender presentation, even though it is impossible ever to completely live up to the patriarchal expectation of female appearance, are suffering from false consciousness, or by some "subversivist"* genderqueer activists who regard those who openly and visibly defy norms of gender presentation as somehow inherently "more ethical" or "more radical" than trans people with "binary" gender presentations, who are seen as "reinforcing the binary".
*I have issues with this usage, but haven't got space to address them in this post.
However, if we are going to define all those who are not part of the "mainstream" culture (with regard to gender or anything else) as "non-conforming", this sets up a problem: IMO, it's unfair to both groups to put people in the equivalents of categories 2 and 3 in one box. It could be argued that category 3 are the only true "non-conformists", as they are the only people who had the choice to conform or not and chose not to, but that conflates categories 2 and 4 and, IMO very offensively, writes them off as worthless to the anti-conformism cause, effectively saying that only those with the privilege of being able to conform to those norms if they wanted to can be true activists against oppressive norms: i think anyone with even the most basic understanding of anti-oppression politics can see just how fucked up and wrong that is. A possible response to that is to say that only those who cannot, by their nature, conform to socially imposed norms can truly oppose them... but that's problematic too, as it sets up an essentialism in which members of the privileged group can never be anything but oppressors - dooming marginalised people to perpetual "outsider" status, and not really allowing any framework for the dismantling of structures of privilege themselves - and by implication erases the desires and identities of those who would like to conform, but cannot.
So, what's the solution? The only way i can see to untangle this is to recognise that there are at least 2 different axes of "conformity" and "nonconformity", only one of which meaningfully maps onto privilege/oppression. The difference between these axes is the difference between "active" and "passive" identity (and i think that this applies to more aspects of identity than those which are defined relatively to social norms, but has to involve aspects of identity which are subject to the perception of observers). With regard to gender, we thus have two possible definitions of "gender-variant" or "gender non-conforming" - A) people who identify themselves as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (however others see them), and B) people who are seen as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (whether they see themselves that way or not).
In response to definition B, i'll quote Option C's response: I really dislike it when people use passive definitions to identify others, personally... A couple main problems I have: First, people are, by nature, active participants in defining their identity. It's impossible to define identity in the absence of this fact - or, at least, you run into all sorts of philosophical problems about defining where the passive individuals somehow are able to aggregate into an active identifying agency. Second, it's inconsistent by nature - if many groups of people experience someone's identifier differently (out as bi in X, but straight in Y, unknown in Z, etc.), is that person now all of these things simultaneously, and how is this even verified? It seems clear to me that the best solution is that the person is what ze identifies as.
I broadly agree with this, and so i see definition B as inadequate. However, the category of people described by definition B clearly exists, so it is, IMO, necessary to have terms with which to talk about it. A better way that i can see of conceptualising this category is as the category of people who are subject to oppression on the basis of (perceived) non-gender-normativity. This group of people clearly has common interests (i.e. in the ending of such oppression), which overlap with, but are not necessarily identical to, the common interests of the group of people who identify as non-gender-normative (not all of whom may necessarily be oppressed as such).
Something very similar, if not identical, occurs with disability-as-identity - there are many people with impairments who do not consider themselves to be "disabled" (often because of the perceived stigma attached to the term), although they do experience "disability" as defined in the social model* as "the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments" - so are those people "disabled people"? Yes for an experience-of-oppression-based definition, but no for a self-identification-based one. (Interestingly, as noted in this thread from 2006 on the BBC Ouch! message board, the UK's Disability Rights Commission has chosen for essentially this reason to use the term "people who have rights under the DDA" (Disability Discrimination Act, which defines disability in a mostly-medical-model way centred on impairment) rather than "disabled people", except in the context of (self-defining) "disabled people's organisations".)
*Apologies for lazy Wikipedia usage here. I know there are better links to concise descriptions of the social model, but for some reason tonight i couldn't find them. I think the Wikipedia quote is adequate, though.
One major aspect of all this IMO is that choices that should be value-neutral (such as whether or not to actively identify with a group one is or may be perceived by others as belonging to) are made not-neutral by living in an oppressive society which is set up so that, whatever we do and however we identify, some of the choices we make will end up inadvertently supporting (or at least being perceived by others as supporting) structures of oppression - a phenomenon that i have also noticed in many other places (for one example, BDSM relationships in which a male plays a dominant role and a female a submissive one) - so what can be done about it? Asking people to change or police their choices - as the radfems do with regard to BDSM and "normatively-feminine" gender presentations (among other things) and the "subversivists" do with regard to binary-identifying or binary-presenting transsexual people - is clearly not acceptable in any even vaguely libertarian perspective, as it's against the most basic principles of individual freedom and autonomy - but, as far as i can tell, that leaves the only real answer as to work towards changing the wider society into one which doesn't oppress people based on either chosen or unchosen identities - which obviously is what we are all (or all should be!) fighting for, but which also feels kind of inadequate in the here and now...
And i wanted to say more here, including something about "passive" and "active" verb constructions in English, and the ambiguity of the verb "to pass" (in a "passing as..." context), but a) i'm knackered and need to go to bed (and want to post this now as i've got a lot to do tomorrow), and b) this is already well over 2000 words, so i'll leave it here for now. Potentially more later...
One of the difficulties that i see affecting a lot of conversations about identity issues is an often-unexamined failure to distinguish between two very different ways of seeing "identity" - namely, active identity (a person actively identifying as something) and passive identity (a person passively or unintentionally being identified as something by others). This can cause a lot of confusion, frustration and perception of things people have said as intolerant or offensive - when they weren't at all intended that way - because they used a "passive" rather than an "active" definition of a particular identity and were assumed to be using the other one.
The areas i've particularly noticed this happening (probably because they're my main areas of interest in identity politics - i'm sure it happens with regard to other areas of identity as well) are gender and disability, so that's (mostly) what i'm going to discuss here. In the gender context, it mostly comes up with regard to terms like "gender variant" or "gender non-conforming", and who is included within them. As i said in my first comment at Option C's post, i can easily see cases both of people who do not see themselves as "gender non-conforming", but are seen by others as such, and of the exact opposite - people who do see themselves as "gender non-conforming", but are not (or not always) seen as such by others - with myself as a probable example of the latter category. (An example of the former could be a transsexual woman with a "traditionally feminine" gender identity who does not "pass" as a cis woman, or a transsexual man with a "traditionally masculine" gender identity who does not "pass" as a cis man [see below for clarification of what "passing as" actually means... and yes, i'm aware that the terms "traditionally feminine" and "traditionally masculine" are problematic, but i couldn't think of a better way to express it in that sentence] - who would see themselves as conforming, internally if not externally, to the gender role/expression mostly associated to their sex identity, but would still be likely to be seen by others as having a "mixed" or "variant" gender expression. An example of the latter could be someone who - like myself - identifies as non-binary or genderqueer, but (in my case mostly unintentionally) happens to prefer to dress in a way that superficially fits with the gender role/expression mostly associated to their assigned or apparent sex - who would feel that they are not - or at least not intentionally - conforming to any gender, but would be seen as passably gender-normative by a casual observer.)
This reminds me of how, in my teenage years, i classified the people i knew into 4 categories with regard to the then-current "mainstream" teenage culture: 1) those who both wanted to conform and easily could conform to "mainstream" norms of dress, appearance, musical taste, speech patterns, etc., 2) those who didn't want to conform to the "mainstream", but could easily have conformed if they did want to, 3) those who wanted to conform, but couldn't conform easily or at all, for reasons beyond their control, and 4) those (like myself) who were likewise incapable of conforming, but had no desire to conform anyway. (It's interesting that, long before i was diagnosed as autistic or even knew about autism, i recognised that for me (as for some others i knew, a few of whom i wouldn't be at all surprised if they also turned out to be autistic), conformity to mainstream social norms was very much inherently impossible, while i could tell that many of the other "culturally alternative" young people i knew could, very easily, have been a part of the "mainstream" social group if they had wanted to.)
(Edit: I decided to make a Venn diagram to illustrate the above paragraph, just in case it wasn't clear.)
(2nd edit: i don't seem to be able to make the image any bigger in the post without making the text blurrier. If you click on the image, you can see it at full size, which is 950 pixels wide.)
Those people - the category 2 people - i admired, but also felt envious of, and even possibly a little bit bitter or resentful towards, because, even if i didn't want to take those opportunities, i was still keenly aware that they had social opportunities that i didn't and would never have - what i didn't then, but do now, recognise as privilege. The people who, however, i really felt bad for (in what was very probably, although unintentionally, a horribly patronising way), and thought had by far the worst deal in the whole "mainstream vs. alternative" teenage culture war, were the people in category 3 - those who shared the cultural values of the mainstream, but were not allowed into it (including many disabled, especially "learning-disabled", young people who were very much into the chart pop music, soap operas, clothing brands, etc. that were mainstream at the time, young people from ethnic groups with particularly strict parenting cultures whose parents wouldn't let them do the "mainstream" things their classmates did, those too poor to afford the requisite clothes and other trappings of conspicuous consumption to be accepted into the mainstream social groups, many fat or otherwise not-conventionally-attractive young women, and probably others). As someone firmly in category 4, it was hard not to see the people in category 2 as suffering from some sort of "false consciousness", and to think that they would be much better off if they could view the mainstream culture more critically and move into category 4 (where they would also be accepted by at least some of those in category 3) - so i can easily relate to, if not agree with, the same attitude expressed (among other examples) by radical feminists who argue that all women who put effort into "feminine" gender presentation, even though it is impossible ever to completely live up to the patriarchal expectation of female appearance, are suffering from false consciousness, or by some "subversivist"* genderqueer activists who regard those who openly and visibly defy norms of gender presentation as somehow inherently "more ethical" or "more radical" than trans people with "binary" gender presentations, who are seen as "reinforcing the binary".
*I have issues with this usage, but haven't got space to address them in this post.
However, if we are going to define all those who are not part of the "mainstream" culture (with regard to gender or anything else) as "non-conforming", this sets up a problem: IMO, it's unfair to both groups to put people in the equivalents of categories 2 and 3 in one box. It could be argued that category 3 are the only true "non-conformists", as they are the only people who had the choice to conform or not and chose not to, but that conflates categories 2 and 4 and, IMO very offensively, writes them off as worthless to the anti-conformism cause, effectively saying that only those with the privilege of being able to conform to those norms if they wanted to can be true activists against oppressive norms: i think anyone with even the most basic understanding of anti-oppression politics can see just how fucked up and wrong that is. A possible response to that is to say that only those who cannot, by their nature, conform to socially imposed norms can truly oppose them... but that's problematic too, as it sets up an essentialism in which members of the privileged group can never be anything but oppressors - dooming marginalised people to perpetual "outsider" status, and not really allowing any framework for the dismantling of structures of privilege themselves - and by implication erases the desires and identities of those who would like to conform, but cannot.
So, what's the solution? The only way i can see to untangle this is to recognise that there are at least 2 different axes of "conformity" and "nonconformity", only one of which meaningfully maps onto privilege/oppression. The difference between these axes is the difference between "active" and "passive" identity (and i think that this applies to more aspects of identity than those which are defined relatively to social norms, but has to involve aspects of identity which are subject to the perception of observers). With regard to gender, we thus have two possible definitions of "gender-variant" or "gender non-conforming" - A) people who identify themselves as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (however others see them), and B) people who are seen as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (whether they see themselves that way or not).
In response to definition B, i'll quote Option C's response: I really dislike it when people use passive definitions to identify others, personally... A couple main problems I have: First, people are, by nature, active participants in defining their identity. It's impossible to define identity in the absence of this fact - or, at least, you run into all sorts of philosophical problems about defining where the passive individuals somehow are able to aggregate into an active identifying agency. Second, it's inconsistent by nature - if many groups of people experience someone's identifier differently (out as bi in X, but straight in Y, unknown in Z, etc.), is that person now all of these things simultaneously, and how is this even verified? It seems clear to me that the best solution is that the person is what ze identifies as.
I broadly agree with this, and so i see definition B as inadequate. However, the category of people described by definition B clearly exists, so it is, IMO, necessary to have terms with which to talk about it. A better way that i can see of conceptualising this category is as the category of people who are subject to oppression on the basis of (perceived) non-gender-normativity. This group of people clearly has common interests (i.e. in the ending of such oppression), which overlap with, but are not necessarily identical to, the common interests of the group of people who identify as non-gender-normative (not all of whom may necessarily be oppressed as such).
Something very similar, if not identical, occurs with disability-as-identity - there are many people with impairments who do not consider themselves to be "disabled" (often because of the perceived stigma attached to the term), although they do experience "disability" as defined in the social model* as "the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments" - so are those people "disabled people"? Yes for an experience-of-oppression-based definition, but no for a self-identification-based one. (Interestingly, as noted in this thread from 2006 on the BBC Ouch! message board, the UK's Disability Rights Commission has chosen for essentially this reason to use the term "people who have rights under the DDA" (Disability Discrimination Act, which defines disability in a mostly-medical-model way centred on impairment) rather than "disabled people", except in the context of (self-defining) "disabled people's organisations".)
*Apologies for lazy Wikipedia usage here. I know there are better links to concise descriptions of the social model, but for some reason tonight i couldn't find them. I think the Wikipedia quote is adequate, though.
One major aspect of all this IMO is that choices that should be value-neutral (such as whether or not to actively identify with a group one is or may be perceived by others as belonging to) are made not-neutral by living in an oppressive society which is set up so that, whatever we do and however we identify, some of the choices we make will end up inadvertently supporting (or at least being perceived by others as supporting) structures of oppression - a phenomenon that i have also noticed in many other places (for one example, BDSM relationships in which a male plays a dominant role and a female a submissive one) - so what can be done about it? Asking people to change or police their choices - as the radfems do with regard to BDSM and "normatively-feminine" gender presentations (among other things) and the "subversivists" do with regard to binary-identifying or binary-presenting transsexual people - is clearly not acceptable in any even vaguely libertarian perspective, as it's against the most basic principles of individual freedom and autonomy - but, as far as i can tell, that leaves the only real answer as to work towards changing the wider society into one which doesn't oppress people based on either chosen or unchosen identities - which obviously is what we are all (or all should be!) fighting for, but which also feels kind of inadequate in the here and now...
And i wanted to say more here, including something about "passive" and "active" verb constructions in English, and the ambiguity of the verb "to pass" (in a "passing as..." context), but a) i'm knackered and need to go to bed (and want to post this now as i've got a lot to do tomorrow), and b) this is already well over 2000 words, so i'll leave it here for now. Potentially more later...
Sunday, January 17, 2010
Link and debate request: the usage of "neurodiverse" and "neurotypical"
This is to point people to a comment thread elsewhere rather than to start one here, hence me setting comments to "off" on this post.
New blogger Option C (who says that i inspired hir to start blogging! w00t! :0 :) ) has a very interesting post about the terms "neurodiverse" and "neurotypical", which i think is an extremely important debate. I've replied to it there, so i won't say any more about my thoughts on it here, but i think ze raises some points very much in need of addressing about the ambiguous and potentially problematic nature of those terms.
I might well post on the issue myself once i've got my thoughts a bit more coherent about it (as, indeed, is true of most of the things Option C's posted so far...) Go check it out.
New blogger Option C (who says that i inspired hir to start blogging! w00t! :0 :) ) has a very interesting post about the terms "neurodiverse" and "neurotypical", which i think is an extremely important debate. I've replied to it there, so i won't say any more about my thoughts on it here, but i think ze raises some points very much in need of addressing about the ambiguous and potentially problematic nature of those terms.
I might well post on the issue myself once i've got my thoughts a bit more coherent about it (as, indeed, is true of most of the things Option C's posted so far...) Go check it out.
Monday, January 11, 2010
Drugs, anti-psychiatry and cognitive liberty: transcending "social vs. biological"
(If this comes across as oddly paced or repetitive, it's because it was originally written in 2 parts which i was initially going to post separately, but then combined together - i might not have been quite as "seamless" about it as i wanted to be...)
I've read 2 recent posts on SSRIs with very different perspectives - one at FWD/Forward and the other at What Sorts of People, linking to this article called "5 reasons not to take SSRIs" by Lennard Davis. Both are interesting to me in as much as i'm currently, at least vaguely, looking into the possibility that SSRIs might be worth trying for me to help deal with some aspects of my depression, but that's not what this post is about so much as the frustrating way that discussions of anti-depressants (and psychotropic drugs in general) seem to fall into "pro" and "anti" camps. (I should also give Urocyon's recent post on the subject credit for getting me thinking about it.)
I have always had a strong emotional attachment to anti-psychiatry, partly because it was one of the foundational building blocks - long before i encountered such concepts as the social model of disability, transgender liberation, or indeed even anarchism/libertarianism - of my radical politics. (I am, however, pretty critical of many of the "big name" figures in anti-psychiatry, and think the relationship between it and the neurodiversity/disability rights movement(s) is sometimes problematic and often ambiguous. This will probably be covered more in future posts, tho.) The trouble with many of the more prominent sections of the anti-psychiatry movement is their blanket anti-psychotropic-drugs position (for a concise example see Douglas C. Smith here), which, while Davis doesn't explicitly take it in that article, he certainly can be read as supporting.
Where this seems to come from is a version of the (prevalent to the point of being almost unquestioned by many people in present-day, "mainstream" Western society) dichotomy between the "social" and the "biological", which both mainstream psychiatry and the anti-drug strand of anti-psychiatry seem to regard as mutually exclusive categories. Opinions on the "causes" of depression (or mental distress in general) become polarised into 2 extreme positions - either it's entirely biological/chemical in nature, caused by imbalances of hormones, neurotransmitters, etc., and therefore the only effective treatment is pharmaceutical (with, if you're lucky, a side order of diet and/or exercise), or it's entirely social in nature, caused by problematic interpersonal relationships at either the individual/family or wider society level. Both these positions intensely frustrate me, because neither of them allows for the possibility that - shock horror! - it might be sometimes one and sometimes the other, or even - unthinkably - sometimes both...
I understand why most radical critics of psychiatry tend to fall for the latter position - it is undeniable that Capitalism in the form of the pharmaceutical industry and State repression in the form of coercive psychiatry and the institutional system collaborate in the forced drugging of neurodivergent and/or distressed people (just as in different forms they collaborate throughout modern state-capitalist civilisation). It also superficially fits well with the social model of disability to locate the roots of unhappiness in society rather than in the individual (although only, IMO, if one doesn't fully understand the distinction between "impairment" and "disability"). But it's also worth noting that approaches to the "treatment" or "management" of mental distress that regard it as social or interpersonal in origin - such as the many and varied forms of counselling, psychoanalysis, cognitive behavioural therapy, etc. - can be as easily, and have been as often, corrupted into individualising, victim-blaming forms to serve paternalistic and authoritarian ends as biochemical approaches (for just one example outside a state-coercion context, see here, but it's been done plenty of times by states too).
This also strikes me as parallel to the equally frustrating recurring "nature/nurture" debates about queer and trans identities, with regard to whether sexual orientation, gender identity, etc., are biologically innate or socially constructed. In both cases, anyone aiming for a joined-up, radical liberation politics will get fatally sidetracked if their argument depends on it being either - because, as i've written before with regard to sexual orientation, ultimately, if you believe in liberation and acceptance for all, why should it matter?
Therefore, anti-psychiatry does not have to mean anti-drugs, and the reduction of the concept of anti-psychiatry in the public perception to merely opposition to anti-depressants and other psychotropic drugs is in fact deeply harmful and trivialising of the serious and powerful critique that, IMO, a synthesis of the various strands (libertarian, Marxist/post-colonialist, and feminist) of it offers to many of the foundations of modern, "mainstream" Western society. Unfortunately several of the more prominent groups in the anti-psychiatry movement, such as Mindfreedom International (which, i hasten to add, i thoroughly support in all their core aims), for the reasons i've outlined, tend towards not just an "anti-forced-drugging" but a blanket "anti-drugs" direction, which is probably most exemplified by Peter Breggin - possibly the best-known currently active figure in anti-psychiatry - who has essentially made a whole career out of attacking (often justifiably, it has to be said, but rather unilaterally) SSRIs, stimulants like Ritalin, and other doctor-prescribed psychotropic drugs. However, Breggin's views on autism show that his opposition to such drugs comes not from anti-coercion principles, but from the false ideology that mental distress and/or neurological difference (which he conflates just as much as the dominant paradigm of psychiatry does) are "all social, never biological", which leads him to regurgitate the same old, offensive and disproven "blame the parents" theory espoused by the likes of Leo Kanner and Bruno Bettelheim (with his "refrigerator mothers") - which does as much genuine harm to autistic people and their families as forcibly drugging them does.
In Mindfreedom's case (as Amanda Baggs covers in this excellent post), the blanket anti-drug stuff is essentially just a veneer on top of a basically sound core of opposition to the oppression inherent in a paternalistic, coercive psychiatric system (and has also been toned down noticeably with the most recent overhaul of their website, although their "Knowledge Base" is still heavy on the information - which is massively important and necessary - about the dangers of psychiatric drugs), but as far as people like Breggin are concerned, because of their acceptance of false dichotomies, opposition to drugs seems to have become more important than opposition to coercive psychiatry itself.
Far from being part of the fight back against state paternalism, telling all people with mental distress and/or cognitive impairments that they should never take any prescribed drugs, even if they experience desirable effects (which, incidentally, might well not be the same effects that the prescribing doctor intended them to have, given how much of a crapshoot such things are) from them, is paternalism! It also shades seamlessly into the very ugly pop-cultural tendency to deny the real existence of mental distress or to assert that every problem can be beaten using only "positive thinking" or other kinds of magical bullshit, which - as genderbitch deconstructs magnificently here - comes from the nastiest and most ignorant forms of non-disabled privilege.
Both the blanket pro-drug and the blanket anti-drug positions fail at liberation for the same reason - that they presume a single truth to be applicable to all people who are experiencing mental distress, and prescribe an exclusive range of possible solutions (either always drugs, as necessary if not sufficient, or a somewhat wider, but still by definition exclusive, class of approaches not involving drugs)... yes, we're back to prescriptivism - which has no more place in the movement against coercive psychiatry than it does in any other liberation movement.
It's also a logical fallacy to assume that SSRIs and similar drugs are somehow inherently "evil" and coercive simply because they are used, pushed and prescribed primarily in a coercive manner in the society that we currently live in - just as it's equally illogical to assume that recreational drugs like cannabis, LSD or MDMA ("ecstasy") are either inherently "evil" because they are illegal and therefore linked to violent crime, or inherently "good" because the statist-industrial complex represses them and persecutes people who use them. In any logical libertarian way of looking at things, "mind-altering" substances are in themselves ethically neutral, regardless of whether they are presently promoted or prohibited by the ruling system - yet it can be surprisingly and frustratingly difficult for me to explain - even in "left-libertarian" circles - that my opposition to forced drugging isn't about the effects of the drugs themselves - although those effects can seriously fuck people up, including leaving people with serious impairments, both physical and cognitive, that they didn't have before - but about the fundamental principle of autonomy - it would be wrong, because a violation of an individual's autonomy over their own mind and body, to forcibly drug someone even if the effects of that drug were wholly beneficial.
(In fact, as a generalised maxim, about the only thing [or class of things?] that i think is inherently "wrong" is that which is done to sentient beings without their consent. I also think that's about the only usefully workable definition of the concept of "evil".)
The concept which transcends the false dichotomy of "pro-drugs" and "anti-drugs" positions is that of cognitive liberty (see also the Center [sic] for Cognitive Liberty & Ethics' FAQ on the subject). Defined as "the right of each individual to think independently and autonomously, to use the full spectrum of his or her mind, and to engage in multiple modes of thought", cognitive liberty ought to be central to any (whether "left" or "right") libertarian politics, and yet it's shocking and deeply disappointing how often i see positions antithetical to it held by people who honestly consider themselves libertarians.
Thankfully the concept of cognitive liberty has been combined with anti-psychiatry. Notably, Ken Kesey, author of the great anti-psychiatrist novel One Flew Over The Cuckoo's Nest, was a prominent advocate of the recreational use of hallucinogens and other drugs, yet his novel is one of the most powerful attacks on the fundamental authoritarianism and human-diversity-destroying aims of psychiatry [whether or not you regard it as using the psychiatric institution as a metaphor of wider American/Western society - which i certainly think is a valid reading, but IMO one which doesn't preclude more literal readings from being valid as well) ever written, as well as the only novel which, for me, really expresses - in ways i couldn't begin to describe in words - the true horror of paternalism in action and of the "for your own good" justification for oppression. It's also notable that OFOtCN can be seen as something of a distillation of both major early strands of anti-psychiatry - the "right-libertarian" strand exemplified by Thomas Szasz, with its motif of comparisons to state-socialist totalitarianisms (see McMurphy's several comparisons of the hospital to a "Red Chinese prison camp"), and the vaguely Marxist/"leftist" but also vaguely "New Age"-influenced existentialist approach of the likes of R.D. Laing (which, incidentally, was the original "anti-psychiatry", despite the fact that the term tends to be identified more with Szasz's libertarian approach in current usage).
(I'll note that while One Flew Over The Cuckoo's Nest is among the novels that have most profoundly influenced me on a huge number of psychological, ideological and conceptual levels, i'm fairly sure there are aspects of its treatment of race, gender and perhaps other identity issues that deserve serious critique - i'd love to see Native American perspectives on the character of "Chief Broom", for example - but this is an aside for now, as this post wasn't intended to be about Kesey or OFOtCN as such...)
(I should also note that Szasz, for all his faults (which i'm going to discuss in another post at some point), supports the right of individuals to take all the drugs they want, even though his criticisms of the effectiveness of the drugs mainly prescribed by psychiatrists at the time probably formed some of the foundations of the present absolutist anti-drug position among much of the anti-psychiatry movement.)
As a final point that i think brings me nicely full circle, a bit of looking around Lennard Davis's site brought me to Project Biocultures, which appears to be doing exactly what i think is most necessary to get past ideological traps such as the unhelpful "pro-drugs"/"anti-drugs" dichotomy - crossing those boundaries in order to break down "the artificial separation of categories of science, medicine, technology and the social sciences and humanities", while also attempting to break the barriers between the top-down world of academia and the marginalised people who are likely to be its "subjects". In many ways, disability (including "mental health" and neurodiversity) stands right at the most crucial intersection between the "two cultures" of "science" and "the humanities", the "objective" and the "subjective", the social and the biological - and neither a purely social, nor a purely biological, perspective, but only one which transcends such dichotomies, is sufficient for dealing with the full personal and political reality of it.
I've read 2 recent posts on SSRIs with very different perspectives - one at FWD/Forward and the other at What Sorts of People, linking to this article called "5 reasons not to take SSRIs" by Lennard Davis. Both are interesting to me in as much as i'm currently, at least vaguely, looking into the possibility that SSRIs might be worth trying for me to help deal with some aspects of my depression, but that's not what this post is about so much as the frustrating way that discussions of anti-depressants (and psychotropic drugs in general) seem to fall into "pro" and "anti" camps. (I should also give Urocyon's recent post on the subject credit for getting me thinking about it.)
I have always had a strong emotional attachment to anti-psychiatry, partly because it was one of the foundational building blocks - long before i encountered such concepts as the social model of disability, transgender liberation, or indeed even anarchism/libertarianism - of my radical politics. (I am, however, pretty critical of many of the "big name" figures in anti-psychiatry, and think the relationship between it and the neurodiversity/disability rights movement(s) is sometimes problematic and often ambiguous. This will probably be covered more in future posts, tho.) The trouble with many of the more prominent sections of the anti-psychiatry movement is their blanket anti-psychotropic-drugs position (for a concise example see Douglas C. Smith here), which, while Davis doesn't explicitly take it in that article, he certainly can be read as supporting.
Where this seems to come from is a version of the (prevalent to the point of being almost unquestioned by many people in present-day, "mainstream" Western society) dichotomy between the "social" and the "biological", which both mainstream psychiatry and the anti-drug strand of anti-psychiatry seem to regard as mutually exclusive categories. Opinions on the "causes" of depression (or mental distress in general) become polarised into 2 extreme positions - either it's entirely biological/chemical in nature, caused by imbalances of hormones, neurotransmitters, etc., and therefore the only effective treatment is pharmaceutical (with, if you're lucky, a side order of diet and/or exercise), or it's entirely social in nature, caused by problematic interpersonal relationships at either the individual/family or wider society level. Both these positions intensely frustrate me, because neither of them allows for the possibility that - shock horror! - it might be sometimes one and sometimes the other, or even - unthinkably - sometimes both...
I understand why most radical critics of psychiatry tend to fall for the latter position - it is undeniable that Capitalism in the form of the pharmaceutical industry and State repression in the form of coercive psychiatry and the institutional system collaborate in the forced drugging of neurodivergent and/or distressed people (just as in different forms they collaborate throughout modern state-capitalist civilisation). It also superficially fits well with the social model of disability to locate the roots of unhappiness in society rather than in the individual (although only, IMO, if one doesn't fully understand the distinction between "impairment" and "disability"). But it's also worth noting that approaches to the "treatment" or "management" of mental distress that regard it as social or interpersonal in origin - such as the many and varied forms of counselling, psychoanalysis, cognitive behavioural therapy, etc. - can be as easily, and have been as often, corrupted into individualising, victim-blaming forms to serve paternalistic and authoritarian ends as biochemical approaches (for just one example outside a state-coercion context, see here, but it's been done plenty of times by states too).
This also strikes me as parallel to the equally frustrating recurring "nature/nurture" debates about queer and trans identities, with regard to whether sexual orientation, gender identity, etc., are biologically innate or socially constructed. In both cases, anyone aiming for a joined-up, radical liberation politics will get fatally sidetracked if their argument depends on it being either - because, as i've written before with regard to sexual orientation, ultimately, if you believe in liberation and acceptance for all, why should it matter?
Therefore, anti-psychiatry does not have to mean anti-drugs, and the reduction of the concept of anti-psychiatry in the public perception to merely opposition to anti-depressants and other psychotropic drugs is in fact deeply harmful and trivialising of the serious and powerful critique that, IMO, a synthesis of the various strands (libertarian, Marxist/post-colonialist, and feminist) of it offers to many of the foundations of modern, "mainstream" Western society. Unfortunately several of the more prominent groups in the anti-psychiatry movement, such as Mindfreedom International (which, i hasten to add, i thoroughly support in all their core aims), for the reasons i've outlined, tend towards not just an "anti-forced-drugging" but a blanket "anti-drugs" direction, which is probably most exemplified by Peter Breggin - possibly the best-known currently active figure in anti-psychiatry - who has essentially made a whole career out of attacking (often justifiably, it has to be said, but rather unilaterally) SSRIs, stimulants like Ritalin, and other doctor-prescribed psychotropic drugs. However, Breggin's views on autism show that his opposition to such drugs comes not from anti-coercion principles, but from the false ideology that mental distress and/or neurological difference (which he conflates just as much as the dominant paradigm of psychiatry does) are "all social, never biological", which leads him to regurgitate the same old, offensive and disproven "blame the parents" theory espoused by the likes of Leo Kanner and Bruno Bettelheim (with his "refrigerator mothers") - which does as much genuine harm to autistic people and their families as forcibly drugging them does.
In Mindfreedom's case (as Amanda Baggs covers in this excellent post), the blanket anti-drug stuff is essentially just a veneer on top of a basically sound core of opposition to the oppression inherent in a paternalistic, coercive psychiatric system (and has also been toned down noticeably with the most recent overhaul of their website, although their "Knowledge Base" is still heavy on the information - which is massively important and necessary - about the dangers of psychiatric drugs), but as far as people like Breggin are concerned, because of their acceptance of false dichotomies, opposition to drugs seems to have become more important than opposition to coercive psychiatry itself.
Far from being part of the fight back against state paternalism, telling all people with mental distress and/or cognitive impairments that they should never take any prescribed drugs, even if they experience desirable effects (which, incidentally, might well not be the same effects that the prescribing doctor intended them to have, given how much of a crapshoot such things are) from them, is paternalism! It also shades seamlessly into the very ugly pop-cultural tendency to deny the real existence of mental distress or to assert that every problem can be beaten using only "positive thinking" or other kinds of magical bullshit, which - as genderbitch deconstructs magnificently here - comes from the nastiest and most ignorant forms of non-disabled privilege.
Both the blanket pro-drug and the blanket anti-drug positions fail at liberation for the same reason - that they presume a single truth to be applicable to all people who are experiencing mental distress, and prescribe an exclusive range of possible solutions (either always drugs, as necessary if not sufficient, or a somewhat wider, but still by definition exclusive, class of approaches not involving drugs)... yes, we're back to prescriptivism - which has no more place in the movement against coercive psychiatry than it does in any other liberation movement.
It's also a logical fallacy to assume that SSRIs and similar drugs are somehow inherently "evil" and coercive simply because they are used, pushed and prescribed primarily in a coercive manner in the society that we currently live in - just as it's equally illogical to assume that recreational drugs like cannabis, LSD or MDMA ("ecstasy") are either inherently "evil" because they are illegal and therefore linked to violent crime, or inherently "good" because the statist-industrial complex represses them and persecutes people who use them. In any logical libertarian way of looking at things, "mind-altering" substances are in themselves ethically neutral, regardless of whether they are presently promoted or prohibited by the ruling system - yet it can be surprisingly and frustratingly difficult for me to explain - even in "left-libertarian" circles - that my opposition to forced drugging isn't about the effects of the drugs themselves - although those effects can seriously fuck people up, including leaving people with serious impairments, both physical and cognitive, that they didn't have before - but about the fundamental principle of autonomy - it would be wrong, because a violation of an individual's autonomy over their own mind and body, to forcibly drug someone even if the effects of that drug were wholly beneficial.
(In fact, as a generalised maxim, about the only thing [or class of things?] that i think is inherently "wrong" is that which is done to sentient beings without their consent. I also think that's about the only usefully workable definition of the concept of "evil".)
The concept which transcends the false dichotomy of "pro-drugs" and "anti-drugs" positions is that of cognitive liberty (see also the Center [sic] for Cognitive Liberty & Ethics' FAQ on the subject). Defined as "the right of each individual to think independently and autonomously, to use the full spectrum of his or her mind, and to engage in multiple modes of thought", cognitive liberty ought to be central to any (whether "left" or "right") libertarian politics, and yet it's shocking and deeply disappointing how often i see positions antithetical to it held by people who honestly consider themselves libertarians.
Thankfully the concept of cognitive liberty has been combined with anti-psychiatry. Notably, Ken Kesey, author of the great anti-psychiatrist novel One Flew Over The Cuckoo's Nest, was a prominent advocate of the recreational use of hallucinogens and other drugs, yet his novel is one of the most powerful attacks on the fundamental authoritarianism and human-diversity-destroying aims of psychiatry [whether or not you regard it as using the psychiatric institution as a metaphor of wider American/Western society - which i certainly think is a valid reading, but IMO one which doesn't preclude more literal readings from being valid as well) ever written, as well as the only novel which, for me, really expresses - in ways i couldn't begin to describe in words - the true horror of paternalism in action and of the "for your own good" justification for oppression. It's also notable that OFOtCN can be seen as something of a distillation of both major early strands of anti-psychiatry - the "right-libertarian" strand exemplified by Thomas Szasz, with its motif of comparisons to state-socialist totalitarianisms (see McMurphy's several comparisons of the hospital to a "Red Chinese prison camp"), and the vaguely Marxist/"leftist" but also vaguely "New Age"-influenced existentialist approach of the likes of R.D. Laing (which, incidentally, was the original "anti-psychiatry", despite the fact that the term tends to be identified more with Szasz's libertarian approach in current usage).
(I'll note that while One Flew Over The Cuckoo's Nest is among the novels that have most profoundly influenced me on a huge number of psychological, ideological and conceptual levels, i'm fairly sure there are aspects of its treatment of race, gender and perhaps other identity issues that deserve serious critique - i'd love to see Native American perspectives on the character of "Chief Broom", for example - but this is an aside for now, as this post wasn't intended to be about Kesey or OFOtCN as such...)
(I should also note that Szasz, for all his faults (which i'm going to discuss in another post at some point), supports the right of individuals to take all the drugs they want, even though his criticisms of the effectiveness of the drugs mainly prescribed by psychiatrists at the time probably formed some of the foundations of the present absolutist anti-drug position among much of the anti-psychiatry movement.)
As a final point that i think brings me nicely full circle, a bit of looking around Lennard Davis's site brought me to Project Biocultures, which appears to be doing exactly what i think is most necessary to get past ideological traps such as the unhelpful "pro-drugs"/"anti-drugs" dichotomy - crossing those boundaries in order to break down "the artificial separation of categories of science, medicine, technology and the social sciences and humanities", while also attempting to break the barriers between the top-down world of academia and the marginalised people who are likely to be its "subjects". In many ways, disability (including "mental health" and neurodiversity) stands right at the most crucial intersection between the "two cultures" of "science" and "the humanities", the "objective" and the "subjective", the social and the biological - and neither a purely social, nor a purely biological, perspective, but only one which transcends such dichotomies, is sufficient for dealing with the full personal and political reality of it.
Saturday, January 9, 2010
"Self-injury", masochism and incomprehensible dichotomies
I've read 2 posts on the subject of "self-injury" (a term which, like the somewhat broader "self-harm", i really don't like, but which there are frustratingly few or no better equivalents) recently that have frustrated me enough to feel a need to write a response to them: this one at FWD/Forward and this one (or more accurately its comment thread) at let them eat pro-sm feminist safe spaces. This is probably going to be a bit of an incoherent rant due to its very high percentage of "WTF, i just DON'T GET IT", so apologies in advance for probably-even-worse-than-usual sentence structure and overall post structure (the latter probably also due to paragraphs being written out of order and then moved around)...
I'm writing this response here rather than as a comment on either of those blogs because, in the first case, i'm 99% certain that there is no chance whatsoever that anything i write as a response would get past their comment policy (and that may be the subject of another post), and, in the second case, a) while i agree with every word of distractedhousewife's comments (so much so, in fact, that she might as well be speaking for me throughout that thread, in terms of both opinion and experience - i am so glad that there is someone else who hated Secretary for the same reason as me), it didn't feel like there was much i could add to them, and b) it would be reviving a comment thread over a month old, which usually results in being completely ignored when i do it.
The attitudes towards self-whatever expressed in that FWD/Forward post seem incredibly similar to the attitudes of prescriptive feminists (thanks to genderbitch for that phrase/concept, which i think is much more accurate than "radfem" and the like, and which i'm going to use for that phenomenon from now on) towards BDSM and other to-them-"unacceptable" forms of sex in their superficial division between activities based on types of sensation: "nice", "pleasant" distraction activities like having a hot bath, cuddling an animal (or maybe more accurately "mammal": would it be seen the same way if it was a pet spider or snake or something?) are "healthy and productive ways" of "car[ing] for [one]self", but things that are "nasty" or "painful" like cutting, burning, [etc] one's skin are, somehow (how/why isn't made clear) inherently pathological and/or undesirable, just as "nice", "vanilla" forms of sexual activity are seen as "healthy" and "normal" (by at least those prescriptive feminists who aren't opposed to partnered sex as a whole concept, anyway), but "nasty", "painful" or "degrading" ones are seen as pathological or a result of patriarchal brainwashing. And the thing that strikes me is how powerfully and even (to my reading) positively abby_jean speaks about hir own experiences of cutting [etc], yet, inexplicably for me, jumps straight to talking about it as something so self-evidently bad that why it needed to be "got rid of" (by techniques that pretty much all sound at-least-potentially coercive to me) doesn't even need to be said. I'm left wondering why ze needs to write about it in such a "confessional" tone (similar to that used by ex-addicts or religious penitents) about something that, as far as can be read from hir post, used to work for her.
(There's also the whole elision between "self-harm" and suicide in the comment thread of that post, which also frustrates me to no end, since for me at least, there is absolutely no relationship between those 2 things. This frustrates me even more because just about the only pro-cutting [etc] bloggers i've ever come across have also been very outspokenly pro-euthanasia and pro-assisted-suicide, and their pro-cutting writing seemed to be intended as part of a pro-suicide agenda... hence, no links to drop here...)
There also seems to be this assumption in the FWD post/thread that - even though it is at least recognised as a coping mechanism rather than this totally reasonless and destructive thing - inflicting pain on oneself is never ever ever the right coping mechanism, and that in the long run it always needs to be replaced with other, "better" coping mechanisms - which just leaves me wondering, where does that leave people who have tried other coping mechanisms, and found that cutting or pinching or burning or bruising or [whatever] themselves is the one that works best for them? For me, there were times before i discovered the constructive use of physical pain to either distract from or alleviate something else unbearable (whether an emotional situation or a sensory-overloading thing that i had no control over), when if i had known about it, it would have made those situations massively easier for me, and i actually wish that there had been someone to tell me about such techniques - but, instead, i was led by the mainstream culture to believe that "self-harm" was something that only "insane" people did (and therefore totally irrational and inexplicable, with no possibility of actual usefulness), and/or some form of hopelessly disordered, half-baked, pathetic failure at a suicide attempt. But, although it's not directly addressed, the impression i certainly get from the use of "trigger warnings" and such is that encouraging others to do such things would be considered so thoroughly unacceptable i'm not sure if i have the language to describe how it would be seen.
(Aside: am i the only person who feels very unpleasantly patronised by "trigger warnings"?)
The thing that really bothers me about the comment thread on the sm-feminist post is the level of (defensive? disgusted?) anger aimed at distractedhousewife by... almost every other commenter. There seems to be a real desperation to maintain "self-injury" and BDSM/sexual activity more generally as absolutely unrelated categories, with nothing in common at all, and any suggestion that there is anything in common between them is somehow an absolutely-beyond-the-pale thing to say. Now, i'm aware that some of this is due to the context of the original post - prescriptive feminists attempting to pathologise BDSM by associating it with "self-injury" - but much of it seems more personal than that, especially Dw3t-Hthr's and Bean's responses. A lot of people seem to have a very, very heavy emotional investment in keeping these things absolutely separate.
As far as my own experience goes, the stuff i have done to myself certainly isn't anywhere near as "severe" as what a lot of people i know have done: i've cut myself with sharp blades a few times (only once deeply enough to leave a permanent scar; and note that i seem to scar more easily than a lot of people anyway, perhaps due to certain connective-tissue "oddities" - i still have a noticeable scar from a graze caused by falling down steps onto asphalt 3 1/2 years ago, for example), slashed/scratched myself with semi-sharp objects (eg keys) quite a few times, punched myself, banged my head against things once or twice, and got ridiculously drunk specifically so that i would have a really painful hangover the next day once (that one wasn't very successful...). But then, i have several habits that blur the lines between what would definitely be considered "self-injury" and what could just be considered tics, stims or slightly OCD-ish things: compulsively squeezing out the pores on my face and arms (sometimes damaging my skin in the process), or cutting my nails so far back i sometimes damage the "quick" underneath, or scrubbing myself really hard with a pan scourer in the shower (which often leaves scratch marks that last a few days), for example - all of which are things i often consciously do for the sensory and/or hormonal effects of the pain when i am feeling stressed or frustrated, but also sometimes just because i like the feel of them - and i don't see any fundamental difference.
Also, to deal with another apparently-absolute dichotomy, there are several things i have done to myself about which i was, and still am, genuinely not sure if they were "sexual" or not. Is, for example, starting to have sexual fantasies while cutting or scratching oneself - perhaps because the endorphins allow one to feel "good enough" to get aroused, rather than because of any initial sexual intent - in the "solo BDSM" category or the "coping with depression" category? And - possibly to be more honest than i really want to be, but after reading that comment thread i feel the need to say - masturbation itself is, at least as often as not, something that i do not for a pleasurable sensation, but as a nowhere-near-complete-but-still-better-than-anything-else-i-can-think-of attempt to alleviate the overwhelming "badness" [not wanting to use the word "pain" here due to its extreme ambiguity in this context!] of involuntary celibacy and an unwanted, but horribly distracting and frustrating, sex drive.
I feel like there might be a link with what amandaw says in the comments to this other FWD/Forward post about "abuse" of prescription drugs: I still really struggle with some amount of bitterness against the very existence of recreational use of some of these drugs.: it seems like a lot of people have a lot invested in some very rigid and absolute dichotomy between needing to do or have something (or being "compelled" to do it, which frankly i find even less comprehensible, because for me "compulsion" is something that comes from outside a person, whereas what "compulsion" seems to mean to people when they talk about things like drug addiction, "self-harm", behaviours categorised as "OCD", etc is something more like "a felt need that is somehow pathological", and located entirely inside the person) and merely wanting it. For me, that absolute split just isn't there; it's not that i don't recognise any difference (of course a need for something that someone will literally die without and a desire for something that will have little or no material difference to one's life are extremely different), but that for me it's not so much a dichotomy as opposite ends of a continuous spectrum - i simply can't see any set point at which "merely" wanting something somehow crosses over into actually needing that thing, and then becomes something entirely different to be responded to in entirely different ways, and kept conceptually separate as fiercely and defensively as possible. Just where is this dividing line?
(Edit: i've just realised that the previous paragraph is pretty relevant to a lot of other stuff as well, notably the "gatekeeping" debate with regard to SRS/gender transition, and some of the nasty identity stuff around "appropriation" (a concept i'm going to have to do a post on the problematic uses of...) that seems to happen there. Some stuff about use of assistive technologies by people with different impairments too... and probably other things...)
Maybe there is some "neurotypical" way of "self-injuring" which is completely and utterly different from anything i have experienced, and that i (and, seemingly, others like me) really don't understand. Maybe some people do feel "compulsions" as something fundamentally, qualitatively rather than just quantitatively, different from simply wanting something really intensely and overwhelmingly; if that's the case, then i have absolutely no idea what that would feel like. But, if this is the case, then i haven't read any comprehensible description of it, and nor have i ever encountered someone willing to explain exactly what this distinction is, or why they are fundamentally separate, non-contiguous categories.
Maybe, in fact, this is a bit like the gender identity thing - something that seems self-evident to the majority of people, but that i can't grasp simply because it isn't there in me? I don't know; i'd genuinely like to know what it is that i'm not (and, from the thread at sm-feminist, at least one other autistic person, who's a much better and clearer writer than i am, also isn't) getting here, but i'm kind of afraid to ask because of how "unthinkable" even the question seems to be for so many people. Is the way that "self-injury" seems to have some sort of taboo status as something that must never, ever be encouraged, "normalised" or treated as a positive coping technique for anything... something purely cultural, which (like so many other generally-unquestioned norms of "mainstream" Western culture) my lack of "proper" acculturation allows me to "see through"? (although phrasing it like that feels a little uncomfortably like asserting some sort of autistic superiority over the "dumb sheeple"...), or is it actually something inherent to the non-autistic psyche (which would, presumably, make autistic and non-autistic people's "self-injury" into fundamentally different phenomena - something i'm not exactly comfortable with either, as it seems very like essentialising a difference between autistic and non-autistic people to an extent that makes attempts at mutual understanding almost futile)?
I'm not being controversial for the sake of it here, but writing out of honest frustration that i am somewhat worried might be interpreted as such. I have a feeling this might go even deeper, and into theory-of-mind-related gaps in my understanding of the "self", which i've attempted to write about before but never got anything even remotely coherent enough to make into a blog post, and which i'm certainly too tired now to even start trying to explain tonight, so i'll stop here. Apologies for the ridiculously high number of asides and contorted parenthetical sentences. Any coherent and non-flamey responses, however, much appreciated.
I'm writing this response here rather than as a comment on either of those blogs because, in the first case, i'm 99% certain that there is no chance whatsoever that anything i write as a response would get past their comment policy (and that may be the subject of another post), and, in the second case, a) while i agree with every word of distractedhousewife's comments (so much so, in fact, that she might as well be speaking for me throughout that thread, in terms of both opinion and experience - i am so glad that there is someone else who hated Secretary for the same reason as me), it didn't feel like there was much i could add to them, and b) it would be reviving a comment thread over a month old, which usually results in being completely ignored when i do it.
The attitudes towards self-whatever expressed in that FWD/Forward post seem incredibly similar to the attitudes of prescriptive feminists (thanks to genderbitch for that phrase/concept, which i think is much more accurate than "radfem" and the like, and which i'm going to use for that phenomenon from now on) towards BDSM and other to-them-"unacceptable" forms of sex in their superficial division between activities based on types of sensation: "nice", "pleasant" distraction activities like having a hot bath, cuddling an animal (or maybe more accurately "mammal": would it be seen the same way if it was a pet spider or snake or something?) are "healthy and productive ways" of "car[ing] for [one]self", but things that are "nasty" or "painful" like cutting, burning, [etc] one's skin are, somehow (how/why isn't made clear) inherently pathological and/or undesirable, just as "nice", "vanilla" forms of sexual activity are seen as "healthy" and "normal" (by at least those prescriptive feminists who aren't opposed to partnered sex as a whole concept, anyway), but "nasty", "painful" or "degrading" ones are seen as pathological or a result of patriarchal brainwashing. And the thing that strikes me is how powerfully and even (to my reading) positively abby_jean speaks about hir own experiences of cutting [etc], yet, inexplicably for me, jumps straight to talking about it as something so self-evidently bad that why it needed to be "got rid of" (by techniques that pretty much all sound at-least-potentially coercive to me) doesn't even need to be said. I'm left wondering why ze needs to write about it in such a "confessional" tone (similar to that used by ex-addicts or religious penitents) about something that, as far as can be read from hir post, used to work for her.
(There's also the whole elision between "self-harm" and suicide in the comment thread of that post, which also frustrates me to no end, since for me at least, there is absolutely no relationship between those 2 things. This frustrates me even more because just about the only pro-cutting [etc] bloggers i've ever come across have also been very outspokenly pro-euthanasia and pro-assisted-suicide, and their pro-cutting writing seemed to be intended as part of a pro-suicide agenda... hence, no links to drop here...)
There also seems to be this assumption in the FWD post/thread that - even though it is at least recognised as a coping mechanism rather than this totally reasonless and destructive thing - inflicting pain on oneself is never ever ever the right coping mechanism, and that in the long run it always needs to be replaced with other, "better" coping mechanisms - which just leaves me wondering, where does that leave people who have tried other coping mechanisms, and found that cutting or pinching or burning or bruising or [whatever] themselves is the one that works best for them? For me, there were times before i discovered the constructive use of physical pain to either distract from or alleviate something else unbearable (whether an emotional situation or a sensory-overloading thing that i had no control over), when if i had known about it, it would have made those situations massively easier for me, and i actually wish that there had been someone to tell me about such techniques - but, instead, i was led by the mainstream culture to believe that "self-harm" was something that only "insane" people did (and therefore totally irrational and inexplicable, with no possibility of actual usefulness), and/or some form of hopelessly disordered, half-baked, pathetic failure at a suicide attempt. But, although it's not directly addressed, the impression i certainly get from the use of "trigger warnings" and such is that encouraging others to do such things would be considered so thoroughly unacceptable i'm not sure if i have the language to describe how it would be seen.
(Aside: am i the only person who feels very unpleasantly patronised by "trigger warnings"?)
The thing that really bothers me about the comment thread on the sm-feminist post is the level of (defensive? disgusted?) anger aimed at distractedhousewife by... almost every other commenter. There seems to be a real desperation to maintain "self-injury" and BDSM/sexual activity more generally as absolutely unrelated categories, with nothing in common at all, and any suggestion that there is anything in common between them is somehow an absolutely-beyond-the-pale thing to say. Now, i'm aware that some of this is due to the context of the original post - prescriptive feminists attempting to pathologise BDSM by associating it with "self-injury" - but much of it seems more personal than that, especially Dw3t-Hthr's and Bean's responses. A lot of people seem to have a very, very heavy emotional investment in keeping these things absolutely separate.
As far as my own experience goes, the stuff i have done to myself certainly isn't anywhere near as "severe" as what a lot of people i know have done: i've cut myself with sharp blades a few times (only once deeply enough to leave a permanent scar; and note that i seem to scar more easily than a lot of people anyway, perhaps due to certain connective-tissue "oddities" - i still have a noticeable scar from a graze caused by falling down steps onto asphalt 3 1/2 years ago, for example), slashed/scratched myself with semi-sharp objects (eg keys) quite a few times, punched myself, banged my head against things once or twice, and got ridiculously drunk specifically so that i would have a really painful hangover the next day once (that one wasn't very successful...). But then, i have several habits that blur the lines between what would definitely be considered "self-injury" and what could just be considered tics, stims or slightly OCD-ish things: compulsively squeezing out the pores on my face and arms (sometimes damaging my skin in the process), or cutting my nails so far back i sometimes damage the "quick" underneath, or scrubbing myself really hard with a pan scourer in the shower (which often leaves scratch marks that last a few days), for example - all of which are things i often consciously do for the sensory and/or hormonal effects of the pain when i am feeling stressed or frustrated, but also sometimes just because i like the feel of them - and i don't see any fundamental difference.
Also, to deal with another apparently-absolute dichotomy, there are several things i have done to myself about which i was, and still am, genuinely not sure if they were "sexual" or not. Is, for example, starting to have sexual fantasies while cutting or scratching oneself - perhaps because the endorphins allow one to feel "good enough" to get aroused, rather than because of any initial sexual intent - in the "solo BDSM" category or the "coping with depression" category? And - possibly to be more honest than i really want to be, but after reading that comment thread i feel the need to say - masturbation itself is, at least as often as not, something that i do not for a pleasurable sensation, but as a nowhere-near-complete-but-still-better-than-anything-else-i-can-think-of attempt to alleviate the overwhelming "badness" [not wanting to use the word "pain" here due to its extreme ambiguity in this context!] of involuntary celibacy and an unwanted, but horribly distracting and frustrating, sex drive.
I feel like there might be a link with what amandaw says in the comments to this other FWD/Forward post about "abuse" of prescription drugs: I still really struggle with some amount of bitterness against the very existence of recreational use of some of these drugs.: it seems like a lot of people have a lot invested in some very rigid and absolute dichotomy between needing to do or have something (or being "compelled" to do it, which frankly i find even less comprehensible, because for me "compulsion" is something that comes from outside a person, whereas what "compulsion" seems to mean to people when they talk about things like drug addiction, "self-harm", behaviours categorised as "OCD", etc is something more like "a felt need that is somehow pathological", and located entirely inside the person) and merely wanting it. For me, that absolute split just isn't there; it's not that i don't recognise any difference (of course a need for something that someone will literally die without and a desire for something that will have little or no material difference to one's life are extremely different), but that for me it's not so much a dichotomy as opposite ends of a continuous spectrum - i simply can't see any set point at which "merely" wanting something somehow crosses over into actually needing that thing, and then becomes something entirely different to be responded to in entirely different ways, and kept conceptually separate as fiercely and defensively as possible. Just where is this dividing line?
(Edit: i've just realised that the previous paragraph is pretty relevant to a lot of other stuff as well, notably the "gatekeeping" debate with regard to SRS/gender transition, and some of the nasty identity stuff around "appropriation" (a concept i'm going to have to do a post on the problematic uses of...) that seems to happen there. Some stuff about use of assistive technologies by people with different impairments too... and probably other things...)
Maybe there is some "neurotypical" way of "self-injuring" which is completely and utterly different from anything i have experienced, and that i (and, seemingly, others like me) really don't understand. Maybe some people do feel "compulsions" as something fundamentally, qualitatively rather than just quantitatively, different from simply wanting something really intensely and overwhelmingly; if that's the case, then i have absolutely no idea what that would feel like. But, if this is the case, then i haven't read any comprehensible description of it, and nor have i ever encountered someone willing to explain exactly what this distinction is, or why they are fundamentally separate, non-contiguous categories.
Maybe, in fact, this is a bit like the gender identity thing - something that seems self-evident to the majority of people, but that i can't grasp simply because it isn't there in me? I don't know; i'd genuinely like to know what it is that i'm not (and, from the thread at sm-feminist, at least one other autistic person, who's a much better and clearer writer than i am, also isn't) getting here, but i'm kind of afraid to ask because of how "unthinkable" even the question seems to be for so many people. Is the way that "self-injury" seems to have some sort of taboo status as something that must never, ever be encouraged, "normalised" or treated as a positive coping technique for anything... something purely cultural, which (like so many other generally-unquestioned norms of "mainstream" Western culture) my lack of "proper" acculturation allows me to "see through"? (although phrasing it like that feels a little uncomfortably like asserting some sort of autistic superiority over the "dumb sheeple"...), or is it actually something inherent to the non-autistic psyche (which would, presumably, make autistic and non-autistic people's "self-injury" into fundamentally different phenomena - something i'm not exactly comfortable with either, as it seems very like essentialising a difference between autistic and non-autistic people to an extent that makes attempts at mutual understanding almost futile)?
I'm not being controversial for the sake of it here, but writing out of honest frustration that i am somewhat worried might be interpreted as such. I have a feeling this might go even deeper, and into theory-of-mind-related gaps in my understanding of the "self", which i've attempted to write about before but never got anything even remotely coherent enough to make into a blog post, and which i'm certainly too tired now to even start trying to explain tonight, so i'll stop here. Apologies for the ridiculously high number of asides and contorted parenthetical sentences. Any coherent and non-flamey responses, however, much appreciated.
Wednesday, January 6, 2010
ASAN Action Alert: Free Zakhqurey Price!
Edit (01/08): there is now a transcript of an interview with Zakhqurey's grandmother here thanks to Tera, and two heavily recommended posts by Urocyon here and here.
I've been forwarded this from several different sources, so am reposting it here. It's worth noting that, even though this particular situation is going on in the US, the same sort of thing happens in the UK, other European countries, and elsewhere...
Hello,
In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to.
Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.
According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools.
Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now.
Find out how below:
School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834 *
E-mail: psiebenm@fortsmithschools.org
School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201 *
We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:
-Drop the charges against Zakhqurey Price
-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment
-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.
If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely.
That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056 *
Please pass this on to any other networks (blogs, forums, email lists, things like Twitter, etc).
* I assume these are US phone numbers. I don't really know how US phone numbers work and if it's possible to call them from outside the US, or what international call prefixes you would need to add, how much it would cost (probably a lot), etc. If you're in the UK/Europe, IMO it would probably be better to email rather than phone.
I've been forwarded this from several different sources, so am reposting it here. It's worth noting that, even though this particular situation is going on in the US, the same sort of thing happens in the UK, other European countries, and elsewhere...
Hello,
In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to.
Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.
According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools.
Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now.
Find out how below:
School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834 *
E-mail: psiebenm@fortsmithschools.org
School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201 *
We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:
-Drop the charges against Zakhqurey Price
-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment
-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.
If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely.
That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056 *
Please pass this on to any other networks (blogs, forums, email lists, things like Twitter, etc).
* I assume these are US phone numbers. I don't really know how US phone numbers work and if it's possible to call them from outside the US, or what international call prefixes you would need to add, how much it would cost (probably a lot), etc. If you're in the UK/Europe, IMO it would probably be better to email rather than phone.
Thursday, December 31, 2009
Blog functionality update
In response to the spam commenting issues i've been having, and thanks to Lindsay for telling me that the relevant settings exist, i have now changed my comment settings to moderate all comments on posts over the (fairly arbitrary) limit of 50 days old (as it only seems to be posts over approximately that age which recieve spam comments).
I'm also working on writing a better comments policy than the minimal one i've got up at the moment (although it certainly won't be anywhere near as restrictive as those that many, especially feminist, blogs seem to have, as i have major ethical problems with the level of (what i can't think of any better word for than) censorship of comments exercised on many blogs [and not the simplistic "free speech" ones either; i'm going to write about this when i can verbalise more coherently about it] - it's more an exercise for myself in working out what exactly falls into the category of "spam" and what doesn't, after i recieved some short and to-me-incomprehensible-and-irrelevant-but-possibly-not-actually-spam comments on a recent post, which i deleted, but then felt a bit unsure if i was right to do so when they didn't strictly fit into my existing deletion criteria. (If the anonymous person who posted them is reading this, isn't a spammer, and is able to explain in greater detail what ze was trying to say, i apologise, and i welcome hir to respond here.)).
There are also two pieces of functionality that i'd like, if possible, to put on this blog, but which i've only seen on non-Blogspot blogs so far: the first is the sidebar widget which lists and links to the N most recent comments (as opposed to most recent posts), as seen on blogs hosted at ScienceBlogs (e.g. Tetrapod Zoology or Respectful Ignorance, on both of which it can be seen on the left sidebar just below the "recent posts" widget. I think i've also seen WordPress blogs use that feature; IIRC, Ballastexistenz had it before the most recent theme change. [EDIT: Questioning Transphobia also has it.]) The second is a rather nice feature which FWD/Forward has, where commenters can choose to include a link to their most recent blog post at the bottom of their comments; i think this is a really good way of enabling networking and outreach between blogs, considerably better than the Blogger profile system. I suspect neither of these is possible to put in a Blogspot blog, but i am going to investigate to see if it can be done; if anyone reading this knows a way it can be done, i'd appreciate telling me. (Yes, i know i'll get replies saying "switch to Wordpress", but there are also good reasons why i'm keeping this blog, at least for now, on Blogspot: i like the way tags work on this platform, and really don't like the way they seem to work on Wordpress, for example.)
At some point, i'm going to start work on the header image i've got planned, too (thanks to Urocyon for letting me know how to do that), but that may not be particularly soon.
Anyway. Off to respond to comments on my last post now (apologies for not responding sooner, it was due to being away for Christmas and having only intermittent internet access making thinking about responses somewhat difficult. One of my new year's resolutions this year is to try to reply to blog comments more promptly...). May do a "proper" post tonight or tomorrow if i have the energy...
I'm also working on writing a better comments policy than the minimal one i've got up at the moment (although it certainly won't be anywhere near as restrictive as those that many, especially feminist, blogs seem to have, as i have major ethical problems with the level of (what i can't think of any better word for than) censorship of comments exercised on many blogs [and not the simplistic "free speech" ones either; i'm going to write about this when i can verbalise more coherently about it] - it's more an exercise for myself in working out what exactly falls into the category of "spam" and what doesn't, after i recieved some short and to-me-incomprehensible-and-irrelevant-but-possibly-not-actually-spam comments on a recent post, which i deleted, but then felt a bit unsure if i was right to do so when they didn't strictly fit into my existing deletion criteria. (If the anonymous person who posted them is reading this, isn't a spammer, and is able to explain in greater detail what ze was trying to say, i apologise, and i welcome hir to respond here.)).
There are also two pieces of functionality that i'd like, if possible, to put on this blog, but which i've only seen on non-Blogspot blogs so far: the first is the sidebar widget which lists and links to the N most recent comments (as opposed to most recent posts), as seen on blogs hosted at ScienceBlogs (e.g. Tetrapod Zoology or Respectful Ignorance, on both of which it can be seen on the left sidebar just below the "recent posts" widget. I think i've also seen WordPress blogs use that feature; IIRC, Ballastexistenz had it before the most recent theme change. [EDIT: Questioning Transphobia also has it.]) The second is a rather nice feature which FWD/Forward has, where commenters can choose to include a link to their most recent blog post at the bottom of their comments; i think this is a really good way of enabling networking and outreach between blogs, considerably better than the Blogger profile system. I suspect neither of these is possible to put in a Blogspot blog, but i am going to investigate to see if it can be done; if anyone reading this knows a way it can be done, i'd appreciate telling me. (Yes, i know i'll get replies saying "switch to Wordpress", but there are also good reasons why i'm keeping this blog, at least for now, on Blogspot: i like the way tags work on this platform, and really don't like the way they seem to work on Wordpress, for example.)
At some point, i'm going to start work on the header image i've got planned, too (thanks to Urocyon for letting me know how to do that), but that may not be particularly soon.
Anyway. Off to respond to comments on my last post now (apologies for not responding sooner, it was due to being away for Christmas and having only intermittent internet access making thinking about responses somewhat difficult. One of my new year's resolutions this year is to try to reply to blog comments more promptly...). May do a "proper" post tonight or tomorrow if i have the energy...
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