Well, today i gave my presentation...
I think it actually went surprisingly well. The time slot allotted was 1 1/2 hours, and i started a bit late as i was waiting for people to come in, but the room soon filled up - the majority of people there were interested. I thought my talk would take 20-30 minutes, and it ended up taking over an hour, partly because of questions and interruptions (coughLaurentiuscough ;) ) and partly because of me going a bit rambly and remembering things i needed to say that i had forgotten to include on the handout.
I didn't conclude as conclusively as i wanted to, but then, that's always a problem for me (as those who read this blog may well have noticed). My conclusion was essentially that there is a need and a place for impairment-specific groups and organising, but that impairment-specific groups need to recognise that they are part of a wider disability movement (and an even wider pro-diversity/anti-discrimination movement).
The discussion afterwards, although shorter than i wanted it to be, was also really good. I was surprised and flattered by the several people who told me how good they thought my presentation was - i was really nervous at first, but presenting to an autistic audience massively helped - i knew i wouldn't be judged for the little style things that a predominantly NT audience would probably have judged it negatively for, like sitting down and standing up again multiple times while speaking, pausing/trailing off a few times to shuffle my notes, having to run out halfway through to get a glass of water because my throat was so dried out from talking loud enough for a room full of people to hear me, frequently not looking at the audience, etc...
I think i actually managed to influence a few people's views in favour of the social model of disability, which is very very cool :)
It was pretty knackering, though (and my throat is now feeling raw)... but, i am kind of elated...
There's a discussion on alternative sexualities later this evening, which sounds awesome. Have met one trans person and several people in poly relationships here.
Pissed down with rain today, but the scenery is still inspiring. Swifts and swallows flying around in massive flocks all over the place.
Mozart and the Whale was... interesting, but i'm not sure if either of the leads came across as genuinely Aspie-like to me. More coherent thoughts on it in a future post (probably).
Off to collapse for an hour or so now...
Showing posts with label communication. Show all posts
Showing posts with label communication. Show all posts
Thursday, July 31, 2008
Sunday, July 6, 2008
Hugely frustrating communication issues, and inadvertently hurting other people.
(This isn't anywhere near as coherent as I want it to be, and a large part of me is certain that posting it will actually exacerbate, rather than clear up, some if not all of the situations it describes. But I'm going to post it as it stands anyway, and maybe edit it later, because I feel a strong need to put it out there...)
I'm really upset and frustrated with this discussion.
This is something that keeps happening to me – I post something in response to something written by someone who (usually) I like and admire, which that person (or someone else) disagrees with part of, or asks me to explain further. I try to explain further, and somehow compound the disagreement, or don't quite express myself clearly enough, with the result that what I said gets misinterpreted, or gets things inferred from it that I didn't intend to imply. I then try to set out my views more clearly, but the compounding of disagreement gets worse, and starts to get interpreted as a personal attack. From then on, my every attempt to correct and clarify – usually with the intention to aim for agreement, since that's nearly always my aim in discussion (and maybe that's something problematic? I dunno) – can only make things worse...
(here and here are other examples, and too many threads on Barbelith, before I gave up posting there, to count...)
The thing that particularly gets me is that, in nearly all of these cases, I really don't want to “attack” or to offend the other person(s) involved – usually, my desire to clarify my views and to get them to, if not agree with them, then at least to see them as reasonable, is so strong because they are people who I like and admire and who have said things that I agree with and find true and inspiring. Unintentionally offending people who I admire is very upsetting for me, and it makes me feel a genuine, heartfelt desire to apologise, to tell them I don't want to make them angry or upset, and that that wasn't my intent.
However, I then get caught in a worse double-bind, because, apparently, it isn't legitimate to apologise to someone for offending them, rather than for what you said - which I also really don't understand. I have always passionately believed that retracting something you have said, if you still believe in it, because you caused offence to someone by saying it, is the height of hypocrisy (which is why it infuriates and disgusts me when politicians do it, as they seem to do all the time, particularly when what they said in the first place was something I agreed with, or that exposed the hypocrisy of other politicians). But I also genuinely feel ashamed and guilty for offending people I like when my intention was not to cause offence - but, then, it seems I am not allowed to attempt to make any kind of reparations for the offence, without retracting what I said - so I really don't know what to say or do when in this kind of situation, especially when it seems not to be the content of what I said, but the "style" of "how" I said it, that has caused the offence (since it is content that I pay attention to, and style, to me, is irrelevant).
In some of these cases, it seems that my writing style is the cause of the offence, as much if not more than the content of my views. This seems to be tied into some concept of "appropriateness" (which is a concept I always struggle with) - that some writing/speaking styles are appropriate for some topics, but not for others, and that this somehow depends on how "personal" the topics are -
which is a completely incomprehensible dividing line for me, as the dichotomy between the "personal" and the "political" (or sociological, or philosophical, or whatever) is one that has never meaningfully existed for me.
Also, it seems that the issues which I feel the most passion about are the issues which I'm most likely to get accused of being offensively “dispassionate” about, and the topics which I have the most personally invested in are the ones on which I'm most likely to be accused of “treating this as if it's just an interesting topic of conversation” - and I really can't work out why this is - although, I'm getting some sort of impression that, for maybe most people, emotional involvement in something and intellectual rigour about it are mutually exclusive (or perhaps that the application of someone else's attempts at intellectual rigour to something that is emotionally important for them is unwelcome) - whereas, for me, the more "personal", the more emotional and directly-relevant-to-me something is, the more I want and need intellectual rigour in thinking about it.
I get the strong feeling that, if I was having some of these conversations face-to-face, I wouldn't get regarded as taking such a “combative” attitude as I do on the internet. Tentatively, I wonder if that might be to do with the size of the “chunks” of conversation in those respective media – in a real-time conversation, people tend to speak in short sentences, with a much quicker back-and-forth rate, whereas on online discussion threads people tend to make longer statements at a time, trying to set out more of a comprehensive position in each one. I don't know if that has something to do with it. I'm fairly sure that, in my case, it can't be the commonly-cited presence or absence of non-verbal in addition to verbal communication, because I basically don't do non-verbal communication in any circumstance, and tend to find online interchanges easier to accurately state my views in as a result of that.
(I also think that I probably come across as more "sure of myself" on the internet than I do in face-to-face conversations, more definitive and authoritative in my views, which might contribute to it. I always thought that was a good thing, but... maybe not...)
This post isn't just to ask “where am I going wrong?” - it's to express my genuine bewilderment at what happens to me in these sorts of interchanges. I am really, utterly clueless as to what I am doing here that seems, repeatedly, to be so offensive – and yet, saying so seems to merely compound the offence. Frankly, this sort of thing makes me want to give up communicating with people altogether (although, of course, I know that that's not what I really want, it's just how hopeless and despairing it makes me feel – that literally whatever I say in an attempt to clear up an accidental offence I've caused to someone by stating my views will inevitably make it worse, but so will saying nothing).
And this, which I sought out in order to try to make some sense of this and see where I am going wrong, actually makes me feel worse, because, according to those rules, with my communication impairments I will *never* be capable of "civil discourse". And I'm not quite sure whether the things that Ballastexistenz talks about in this post (and the other posts that she links to in it) are the reasons why I get this, because that would seem to absolve me of "guilt" for what happens in these kinds of interactions, and I keenly feel that guilt (whether it's rational to or not).
Have any other autistic people encountered this? If so, what tactics have you found to be helpful in dealing with it? I'm really, really not sure if this is an autistic thing, or if tentatively seeing it as an autistic thing is just making excuses for being an asshole (even though I don't want, and am not trying, to be an asshole).
Any responses whatsoever are welcome. I'm not trying to be disingenuous or feign ignorance of anything here. I genuinely am ignorant of whatever social values I'm transgressing. And i know this is going to come across to people as whiny, self-obsessed, passive-agressive and all kinds of other things that i don't intend to be, but always seem to get accused of being (to the extent that i have to conclude that the accusations are accurate, because if everyone other than me thinks that i am something, then the only logical conclusion i can come to is that everyone else is right and i am wrong). But i want to not be those things... which is why i'm, rather pathetically and probably hopelessly, asking for advice...
I'm really upset and frustrated with this discussion.
This is something that keeps happening to me – I post something in response to something written by someone who (usually) I like and admire, which that person (or someone else) disagrees with part of, or asks me to explain further. I try to explain further, and somehow compound the disagreement, or don't quite express myself clearly enough, with the result that what I said gets misinterpreted, or gets things inferred from it that I didn't intend to imply. I then try to set out my views more clearly, but the compounding of disagreement gets worse, and starts to get interpreted as a personal attack. From then on, my every attempt to correct and clarify – usually with the intention to aim for agreement, since that's nearly always my aim in discussion (and maybe that's something problematic? I dunno) – can only make things worse...
(here and here are other examples, and too many threads on Barbelith, before I gave up posting there, to count...)
The thing that particularly gets me is that, in nearly all of these cases, I really don't want to “attack” or to offend the other person(s) involved – usually, my desire to clarify my views and to get them to, if not agree with them, then at least to see them as reasonable, is so strong because they are people who I like and admire and who have said things that I agree with and find true and inspiring. Unintentionally offending people who I admire is very upsetting for me, and it makes me feel a genuine, heartfelt desire to apologise, to tell them I don't want to make them angry or upset, and that that wasn't my intent.
However, I then get caught in a worse double-bind, because, apparently, it isn't legitimate to apologise to someone for offending them, rather than for what you said - which I also really don't understand. I have always passionately believed that retracting something you have said, if you still believe in it, because you caused offence to someone by saying it, is the height of hypocrisy (which is why it infuriates and disgusts me when politicians do it, as they seem to do all the time, particularly when what they said in the first place was something I agreed with, or that exposed the hypocrisy of other politicians). But I also genuinely feel ashamed and guilty for offending people I like when my intention was not to cause offence - but, then, it seems I am not allowed to attempt to make any kind of reparations for the offence, without retracting what I said - so I really don't know what to say or do when in this kind of situation, especially when it seems not to be the content of what I said, but the "style" of "how" I said it, that has caused the offence (since it is content that I pay attention to, and style, to me, is irrelevant).
In some of these cases, it seems that my writing style is the cause of the offence, as much if not more than the content of my views. This seems to be tied into some concept of "appropriateness" (which is a concept I always struggle with) - that some writing/speaking styles are appropriate for some topics, but not for others, and that this somehow depends on how "personal" the topics are -
which is a completely incomprehensible dividing line for me, as the dichotomy between the "personal" and the "political" (or sociological, or philosophical, or whatever) is one that has never meaningfully existed for me.
Also, it seems that the issues which I feel the most passion about are the issues which I'm most likely to get accused of being offensively “dispassionate” about, and the topics which I have the most personally invested in are the ones on which I'm most likely to be accused of “treating this as if it's just an interesting topic of conversation” - and I really can't work out why this is - although, I'm getting some sort of impression that, for maybe most people, emotional involvement in something and intellectual rigour about it are mutually exclusive (or perhaps that the application of someone else's attempts at intellectual rigour to something that is emotionally important for them is unwelcome) - whereas, for me, the more "personal", the more emotional and directly-relevant-to-me something is, the more I want and need intellectual rigour in thinking about it.
I get the strong feeling that, if I was having some of these conversations face-to-face, I wouldn't get regarded as taking such a “combative” attitude as I do on the internet. Tentatively, I wonder if that might be to do with the size of the “chunks” of conversation in those respective media – in a real-time conversation, people tend to speak in short sentences, with a much quicker back-and-forth rate, whereas on online discussion threads people tend to make longer statements at a time, trying to set out more of a comprehensive position in each one. I don't know if that has something to do with it. I'm fairly sure that, in my case, it can't be the commonly-cited presence or absence of non-verbal in addition to verbal communication, because I basically don't do non-verbal communication in any circumstance, and tend to find online interchanges easier to accurately state my views in as a result of that.
(I also think that I probably come across as more "sure of myself" on the internet than I do in face-to-face conversations, more definitive and authoritative in my views, which might contribute to it. I always thought that was a good thing, but... maybe not...)
This post isn't just to ask “where am I going wrong?” - it's to express my genuine bewilderment at what happens to me in these sorts of interchanges. I am really, utterly clueless as to what I am doing here that seems, repeatedly, to be so offensive – and yet, saying so seems to merely compound the offence. Frankly, this sort of thing makes me want to give up communicating with people altogether (although, of course, I know that that's not what I really want, it's just how hopeless and despairing it makes me feel – that literally whatever I say in an attempt to clear up an accidental offence I've caused to someone by stating my views will inevitably make it worse, but so will saying nothing).
And this, which I sought out in order to try to make some sense of this and see where I am going wrong, actually makes me feel worse, because, according to those rules, with my communication impairments I will *never* be capable of "civil discourse". And I'm not quite sure whether the things that Ballastexistenz talks about in this post (and the other posts that she links to in it) are the reasons why I get this, because that would seem to absolve me of "guilt" for what happens in these kinds of interactions, and I keenly feel that guilt (whether it's rational to or not).
Have any other autistic people encountered this? If so, what tactics have you found to be helpful in dealing with it? I'm really, really not sure if this is an autistic thing, or if tentatively seeing it as an autistic thing is just making excuses for being an asshole (even though I don't want, and am not trying, to be an asshole).
Any responses whatsoever are welcome. I'm not trying to be disingenuous or feign ignorance of anything here. I genuinely am ignorant of whatever social values I'm transgressing. And i know this is going to come across to people as whiny, self-obsessed, passive-agressive and all kinds of other things that i don't intend to be, but always seem to get accused of being (to the extent that i have to conclude that the accusations are accurate, because if everyone other than me thinks that i am something, then the only logical conclusion i can come to is that everyone else is right and i am wrong). But i want to not be those things... which is why i'm, rather pathetically and probably hopelessly, asking for advice...
Monday, April 7, 2008
Autscape
Autscape is a three day conference organised by and for autistic people. There are workshops, leisure activities, social opportunities, and more, all specifically oriented to the needs and preferences of autistic people.
I really, really want to go to this conference. Just about everything about it looks utterly awesome. I really don't know if i will be able to afford £155 (which is the lowest rate, for people on state benefits or similar low incomes), tho...
I almost can't imagine what it would be like to be in an environment in which almost everyone is autistic. While i have met quite a lot of people on the spectrum in my life, and sort-of-know a few other autistic disability activists in the UK (one of whom is apparently one of the people behind this), and of course i "know" lots of autistic people online through blogs and forums, i don't in fact really know (at least not to actually regularly talk to or spend time with) any other autistic people in "real life", and it's a definite hole in my life.
(One of my closest friends, who might possibly also be going to Autscape, and who actually now works for the National Autistic Society, has some autistic/AS-like traits, but probably not enough for an actual diagnosis... although enough for her to "get" me in ways that nearly all neurotypical people don't - i suppose perhaps she fits into that "shadow syndrome" kind of category... or a "Half-Aspie" as i kind of jokingly call her, as her dad was, while undiagnosed, almost certainly an Aspie, but her mum seems to be pretty neurotypical... but she's still far, far more able to fit into the neurotypical world than i am, and i would really love to become closer friends with some other actually, unambiguously autistic people... the majority of the rest of my close friends have physical impairments, but i don't really know how coincidental or otherwise that is - while i definitely seek out disabled people, i don't think i particularly seek out those with physical impairments over those with mental...)
The deadline for submitting proposals for workshops or presentations is the 11th of April, which is this coming Friday... which is really annoying, because i would really love to propose one on the relationship between the (impairment-specific) autism rights movement and the wider (cross-impairment) disability rights movement... but i've got no chance of putting together a proposal by Friday, and in any case i don't know if i'd have the confidence, even in a primarily autistic environment (and i don't even know whether that would increase or decrease my confidence) to do a workshop/presentation myself... plus i'd probably want it to be something like a panel discussion type thing, which would involve others being involved in it as a collaboration... still, they have an email address and a discussion list for "if you are not interested in doing a presentation yourself, but have ideas for workshop or discussion topics", so i might email them...
I don't know whether to go to Autscape would be some sort of massive, emotional "homecoming" experience, or whether in a mostly-autistic environment i would have less communication/understanding problems than in a mostly-neurotypical one, or whether in fact they would remain the same... still, i'm quite unreasonably excited by how awesome, for example, the coloured badges idea is*, and the whole idea of spending a weekend somewhere where i'm the majority neurological type... while i'm not that into impairment-specific identity (i prefer to identify across impairment boundaries in solidarity with all disabled people), i think i still do have that attraction to the idea of being among "my kind", problematic as that concept is...
* I have a really vague idea that this might actually be an adaptation of something that originated from the gay club scene, and had to do with sexual availability... but i'm not sure... i think i remember an event held at my uni for something like HIV awareness called the "Traffic Light Ball" that was based on this idea... anyway, wherever it comes from, it's IMO a brilliant idea, and perfectly repurposed if it was repurposed...
The theme of "Inertia and Action" is one that is particularly appropriate for me right now as well, being all too familiar with the kind of inertia problems that Amanda (of Ballastexistenz) describes one type of very well here, but also believing passionately in the need for action (in all senses of the word!) for disability rights and liberation, as well as all other forms of radical social change...
Would be really interested to hear from anyone who went to Autscape last or a previous year, and what kind of experience they had...
I really, really want to go to this conference. Just about everything about it looks utterly awesome. I really don't know if i will be able to afford £155 (which is the lowest rate, for people on state benefits or similar low incomes), tho...
I almost can't imagine what it would be like to be in an environment in which almost everyone is autistic. While i have met quite a lot of people on the spectrum in my life, and sort-of-know a few other autistic disability activists in the UK (one of whom is apparently one of the people behind this), and of course i "know" lots of autistic people online through blogs and forums, i don't in fact really know (at least not to actually regularly talk to or spend time with) any other autistic people in "real life", and it's a definite hole in my life.
(One of my closest friends, who might possibly also be going to Autscape, and who actually now works for the National Autistic Society, has some autistic/AS-like traits, but probably not enough for an actual diagnosis... although enough for her to "get" me in ways that nearly all neurotypical people don't - i suppose perhaps she fits into that "shadow syndrome" kind of category... or a "Half-Aspie" as i kind of jokingly call her, as her dad was, while undiagnosed, almost certainly an Aspie, but her mum seems to be pretty neurotypical... but she's still far, far more able to fit into the neurotypical world than i am, and i would really love to become closer friends with some other actually, unambiguously autistic people... the majority of the rest of my close friends have physical impairments, but i don't really know how coincidental or otherwise that is - while i definitely seek out disabled people, i don't think i particularly seek out those with physical impairments over those with mental...)
The deadline for submitting proposals for workshops or presentations is the 11th of April, which is this coming Friday... which is really annoying, because i would really love to propose one on the relationship between the (impairment-specific) autism rights movement and the wider (cross-impairment) disability rights movement... but i've got no chance of putting together a proposal by Friday, and in any case i don't know if i'd have the confidence, even in a primarily autistic environment (and i don't even know whether that would increase or decrease my confidence) to do a workshop/presentation myself... plus i'd probably want it to be something like a panel discussion type thing, which would involve others being involved in it as a collaboration... still, they have an email address and a discussion list for "if you are not interested in doing a presentation yourself, but have ideas for workshop or discussion topics", so i might email them...
I don't know whether to go to Autscape would be some sort of massive, emotional "homecoming" experience, or whether in a mostly-autistic environment i would have less communication/understanding problems than in a mostly-neurotypical one, or whether in fact they would remain the same... still, i'm quite unreasonably excited by how awesome, for example, the coloured badges idea is*, and the whole idea of spending a weekend somewhere where i'm the majority neurological type... while i'm not that into impairment-specific identity (i prefer to identify across impairment boundaries in solidarity with all disabled people), i think i still do have that attraction to the idea of being among "my kind", problematic as that concept is...
* I have a really vague idea that this might actually be an adaptation of something that originated from the gay club scene, and had to do with sexual availability... but i'm not sure... i think i remember an event held at my uni for something like HIV awareness called the "Traffic Light Ball" that was based on this idea... anyway, wherever it comes from, it's IMO a brilliant idea, and perfectly repurposed if it was repurposed...
The theme of "Inertia and Action" is one that is particularly appropriate for me right now as well, being all too familiar with the kind of inertia problems that Amanda (of Ballastexistenz) describes one type of very well here, but also believing passionately in the need for action (in all senses of the word!) for disability rights and liberation, as well as all other forms of radical social change...
Would be really interested to hear from anyone who went to Autscape last or a previous year, and what kind of experience they had...
Thursday, November 22, 2007
Word power: communication difficulties (with digressions into climate change and the Sapir-Whorf hypothesis)
(this was originally going to be a comment on Bev's blog, but as i don't feel like i've been posting enough about autism as such on my own blog, i decided to expand it into a post proper...)
Bev at Asperger Square 8 has been saying a lot of good stuff about speech and communication recently that i strongly identify with, even though i've nearly always been regarded (by myself and others) as a very verbal person.
As I have mentioned before, writing is easy for me. I can tell you much more in an e-mail than I can in person. Telephone calls are the hardest method of communication.
This is incredibly true of me. I really, really suck at telephone calls with people i don't know well. Calling someone i need to contact but have never spoken to before can be such a daunting task that it can take me literally months to get round to it. (It was September of last year, at a protests against the Labour Party conference in Manchester, when i first met and got the phone number of a fellow disability rights activist here in Birmingham - it was at least November before i phoned him... and then the phone call was an utter nightmare because i couldn't understand his accent. I still haven't called the number of someone who could help with my screwed up benefit claim that i was given at least 2 months ago.)
On the other hand, there are emails to people that i have procrastinated for as long or longer about sending... but in those cases, the reasons for the procrastination are somewhat different. One particular problem i have is when sending emails in "formal" contexts (job applications, enquiries about postgrad courses, etc) is how formal a writing style to use - the normal email style of "Hi" or no salutation whatsoever doesn't feel right, but old fashioned "formal letter" style feels somehow wrong for an email as well - as if i'm some anachronistic luddite who still thinks he's using a fountain pen. (Although, to be fair, i actually am the latter in many respects...) Generally, though, i'm a shitload more fluent in writing than i am in spoken conversation...
(and, when i'm speaking, especially about technical or theoretical subjects, i tend to use the same parenthetical, multi-clause-sentences, uni-essay-like style that i use when writing... which has been known to confuse or infuriate some people...)
(you know you're hyperlexic when you wish you could speak commas, semicolons, quotation marks, ellipses, parentheses, and even, since i've started blogging... HTML links ;o )
I do the drawing/doodling to focus attention while listening thing too, and remember being told off by teachers for it (one weird thing when i first self-diagnosed as Asperger's is that the first book i found about AS had a design on its front cover almost identical to my doodlings in the margins of my school books... i can't remember the exact title or author of the book, but it was an orange and black cover...).
(EDIT: I found the book through the comments to Bev's blog entry - and it is, in fact, a doodle by an actual Aspie! Maybe there is some kind of... shared style, or something? That's actually a bit spooky...)
And another common experience at school was being told off for "not listening", when in fact i was listening, i just wasn't looking... one thing i always want to say is "I can either look at you or listen to you, but not both". Even as a child, it seemed deeply illogical to me that, to be percieved as "listening", one had to be looking in the direction of the person or thing one was supposed to be listening to - after all, humans (unlike many other species of mammals) have eyes on the front of our heads, and ears on the sides of our heads...
~Don’t jump to conclusions based on body language. I have often had people interpret my posture or facial expressions to mean something far from what I was thinking or feeling. If you know someone is autistic, be aware that that person’s face or body may be speaking a foreign language. Nothing kills a conversation faster for me than having someone tell me what I am thinking. Don’t assume.
YES YES YES AND A THOUSAND TIMES YES. I have had some... interesting experiences with friends and acquaintances who thought they could tell what my "body language" was "saying", to put it mildly. One very close and long-running friend (at 5+ years to date, the longest-running close friend i have ever had, in fact) claims that she can interpret my facial expressions, and that they are "consistent" (to my actual emotions), but not the same as the facial expressions a neurotypical person would have while experiencing those same emotions. I'm actually not sure about that one myself, though i'm willing to accept the idea that i do have some meaningfully communicative facial expressions, even if they're not the same as neurotypical ones and/or learned rather than "instinctive" - however, even if it isn't strictly true, i would probably prefer people (who don't know me very well) to assume that my facial expressions are not intentionally communicating anything.
A particular (and possibly related) communication difficulty i often experience (especially with not-particularly-close friends, and/or people who are NT but "sensitive") is that, when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.
(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)
Someone in the comments mentioned not liking it when ze asked people to repeat things and they rephrased them. This is kind of ironic, because i absolutely hate being asked to repeat what i have just said, and often actually can't repeat it in the exact same words, thus often responding with an expanded or rephrased version of it...
The same person talked about difficulties with "passive" language:
I particularly have a hard time when folks make their language “passive” in order to make it sound more polite, or something. Not only is it condescending, it also quite literally changes the meaning.
This strikes a chord with me, because another thing i have an absolutely unreasoning hatred for is the passive voice (I would seriously like to see it wiped out of the English language). The commonest example of this i encounter, and therefore the one that irritates me the most often, is the phrase "Are you being served?"... which raises really interesting questions about how language shapes ideology and vice versa (the Sapir-Whorf hypothesis - a big influence on George Orwell and Ursula Le Guin, both of whom are big influences on me), because of my corresponding horror of the concept of "being served", which is a major component of both my libertarianism and my submissive orientation, and the reason i really don't like going to restaurants... i am actually quite glad that i'm not a PA user). Oddly, i don't have anywhere near as much of a negative reaction to the colloquial use of "to get" to form the passive as i do to the passive formed with "to be". Running with that Sapir-Whorf thing, i can't help wondering if, in a language with no grammatical passive voice, people would be generally more "active" or "do it yourself" in attitude...
Back to the topic, and moving on to the earlier of Bev's posts, there are times when i find talking almost impossible, even though i am "usually" a fluent talker (or at least within my areas of interest)... it's just that the people i socialise with don't tend to see that side of me much, because i only go into social situations when i'm already mentally prepared for talking. For instance, although i'm capable of having a perfectly fluent internal monologue (and even of rehearsing conversations i intend to have, another thing that i have done pretty much all my life without realising until very recently that it was an autistic trait), and of reading and engaging with long discussions online, as soon as i wake up, it takes me at least 2 hours of being awake (and preferably food and caffeine within those 2 hours) before i can coherently talk to another person.
I also, perhaps paradoxically, find it much more difficult to talk to people in my own home than i do in other places (although this is another one which doesn't apply to people who know me well) - i think this is because, in my head, my home is the place where i can "shut down" all the extra brain activities that i feel the need to use in the "outside world" - similarly, most of my sensory issues (hunger, aversion to cold, unpleasant textures, etc) are easier for me to cope with outside the home than inside. I often find myself relying on memorised "script" phrases (basically, echolalia used consciously and constructively) in conversations required of me in the home.
One particularly (although, of course, unintentionally) irritating and stressful habit of several of the people i've shared houses with (none of whom i've been "out" as an autistic person to, although i'm sure they've all percieved "something wrong" with me) is that of shouting out a greeting as soon as they hear someone enter through the door - thus creating an expectation of a reply which i feel both an obligation and an inability to meet, resulting in major (even if arguably trivial) stress. I can usually manage only (at most) a mumbled, inarticulate sound in reply, which i tend to desperately hope vaguely resembles a greeting-word (sometimes i think it's pretty close to "Hi"). Greeting-words in general are a particular difficulty for me, as they seem to be for many autistic people - i find it very, very difficult to pick the right one...
The pressure-to-respond thing also strikes chords - very often, i am much more able to say or do something when i am not being asked or expected to do it than when i am (another possible contributory factor to my libertarian philosophy?). I remember one particular incident when i was cooking for myself and the friend i was living with at the time, when i was literally just about (as in, within half a minute) to start cooking, when said friend knocked on my room door and asked me when i was going to start cooking, The interruption both delayed me starting to cook by about 10 minutes, by forcing me to restart several trains of thought, and made cooking the whole meal a much more stressful experience than if i had not been "prompted" to do it.
I'm not sure how to conclude this post (another of my quirks of verbal communication?), so, er, i'll just... stop here... but, big thanks to Bev for her posts...
Amanda at Ballastexistenz also has a good recent post in the same general subject area here...
Bev at Asperger Square 8 has been saying a lot of good stuff about speech and communication recently that i strongly identify with, even though i've nearly always been regarded (by myself and others) as a very verbal person.
As I have mentioned before, writing is easy for me. I can tell you much more in an e-mail than I can in person. Telephone calls are the hardest method of communication.
This is incredibly true of me. I really, really suck at telephone calls with people i don't know well. Calling someone i need to contact but have never spoken to before can be such a daunting task that it can take me literally months to get round to it. (It was September of last year, at a protests against the Labour Party conference in Manchester, when i first met and got the phone number of a fellow disability rights activist here in Birmingham - it was at least November before i phoned him... and then the phone call was an utter nightmare because i couldn't understand his accent. I still haven't called the number of someone who could help with my screwed up benefit claim that i was given at least 2 months ago.)
On the other hand, there are emails to people that i have procrastinated for as long or longer about sending... but in those cases, the reasons for the procrastination are somewhat different. One particular problem i have is when sending emails in "formal" contexts (job applications, enquiries about postgrad courses, etc) is how formal a writing style to use - the normal email style of "Hi" or no salutation whatsoever doesn't feel right, but old fashioned "formal letter" style feels somehow wrong for an email as well - as if i'm some anachronistic luddite who still thinks he's using a fountain pen. (Although, to be fair, i actually am the latter in many respects...) Generally, though, i'm a shitload more fluent in writing than i am in spoken conversation...
(and, when i'm speaking, especially about technical or theoretical subjects, i tend to use the same parenthetical, multi-clause-sentences, uni-essay-like style that i use when writing... which has been known to confuse or infuriate some people...)
(you know you're hyperlexic when you wish you could speak commas, semicolons, quotation marks, ellipses, parentheses, and even, since i've started blogging... HTML links ;o )
I do the drawing/doodling to focus attention while listening thing too, and remember being told off by teachers for it (one weird thing when i first self-diagnosed as Asperger's is that the first book i found about AS had a design on its front cover almost identical to my doodlings in the margins of my school books... i can't remember the exact title or author of the book, but it was an orange and black cover...).
(EDIT: I found the book through the comments to Bev's blog entry - and it is, in fact, a doodle by an actual Aspie! Maybe there is some kind of... shared style, or something? That's actually a bit spooky...)
And another common experience at school was being told off for "not listening", when in fact i was listening, i just wasn't looking... one thing i always want to say is "I can either look at you or listen to you, but not both". Even as a child, it seemed deeply illogical to me that, to be percieved as "listening", one had to be looking in the direction of the person or thing one was supposed to be listening to - after all, humans (unlike many other species of mammals) have eyes on the front of our heads, and ears on the sides of our heads...
~Don’t jump to conclusions based on body language. I have often had people interpret my posture or facial expressions to mean something far from what I was thinking or feeling. If you know someone is autistic, be aware that that person’s face or body may be speaking a foreign language. Nothing kills a conversation faster for me than having someone tell me what I am thinking. Don’t assume.
YES YES YES AND A THOUSAND TIMES YES. I have had some... interesting experiences with friends and acquaintances who thought they could tell what my "body language" was "saying", to put it mildly. One very close and long-running friend (at 5+ years to date, the longest-running close friend i have ever had, in fact) claims that she can interpret my facial expressions, and that they are "consistent" (to my actual emotions), but not the same as the facial expressions a neurotypical person would have while experiencing those same emotions. I'm actually not sure about that one myself, though i'm willing to accept the idea that i do have some meaningfully communicative facial expressions, even if they're not the same as neurotypical ones and/or learned rather than "instinctive" - however, even if it isn't strictly true, i would probably prefer people (who don't know me very well) to assume that my facial expressions are not intentionally communicating anything.
A particular (and possibly related) communication difficulty i often experience (especially with not-particularly-close friends, and/or people who are NT but "sensitive") is that, when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.
(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)
Someone in the comments mentioned not liking it when ze asked people to repeat things and they rephrased them. This is kind of ironic, because i absolutely hate being asked to repeat what i have just said, and often actually can't repeat it in the exact same words, thus often responding with an expanded or rephrased version of it...
The same person talked about difficulties with "passive" language:
I particularly have a hard time when folks make their language “passive” in order to make it sound more polite, or something. Not only is it condescending, it also quite literally changes the meaning.
This strikes a chord with me, because another thing i have an absolutely unreasoning hatred for is the passive voice (I would seriously like to see it wiped out of the English language). The commonest example of this i encounter, and therefore the one that irritates me the most often, is the phrase "Are you being served?"... which raises really interesting questions about how language shapes ideology and vice versa (the Sapir-Whorf hypothesis - a big influence on George Orwell and Ursula Le Guin, both of whom are big influences on me), because of my corresponding horror of the concept of "being served", which is a major component of both my libertarianism and my submissive orientation, and the reason i really don't like going to restaurants... i am actually quite glad that i'm not a PA user). Oddly, i don't have anywhere near as much of a negative reaction to the colloquial use of "to get" to form the passive as i do to the passive formed with "to be". Running with that Sapir-Whorf thing, i can't help wondering if, in a language with no grammatical passive voice, people would be generally more "active" or "do it yourself" in attitude...
Back to the topic, and moving on to the earlier of Bev's posts, there are times when i find talking almost impossible, even though i am "usually" a fluent talker (or at least within my areas of interest)... it's just that the people i socialise with don't tend to see that side of me much, because i only go into social situations when i'm already mentally prepared for talking. For instance, although i'm capable of having a perfectly fluent internal monologue (and even of rehearsing conversations i intend to have, another thing that i have done pretty much all my life without realising until very recently that it was an autistic trait), and of reading and engaging with long discussions online, as soon as i wake up, it takes me at least 2 hours of being awake (and preferably food and caffeine within those 2 hours) before i can coherently talk to another person.
I also, perhaps paradoxically, find it much more difficult to talk to people in my own home than i do in other places (although this is another one which doesn't apply to people who know me well) - i think this is because, in my head, my home is the place where i can "shut down" all the extra brain activities that i feel the need to use in the "outside world" - similarly, most of my sensory issues (hunger, aversion to cold, unpleasant textures, etc) are easier for me to cope with outside the home than inside. I often find myself relying on memorised "script" phrases (basically, echolalia used consciously and constructively) in conversations required of me in the home.
One particularly (although, of course, unintentionally) irritating and stressful habit of several of the people i've shared houses with (none of whom i've been "out" as an autistic person to, although i'm sure they've all percieved "something wrong" with me) is that of shouting out a greeting as soon as they hear someone enter through the door - thus creating an expectation of a reply which i feel both an obligation and an inability to meet, resulting in major (even if arguably trivial) stress. I can usually manage only (at most) a mumbled, inarticulate sound in reply, which i tend to desperately hope vaguely resembles a greeting-word (sometimes i think it's pretty close to "Hi"). Greeting-words in general are a particular difficulty for me, as they seem to be for many autistic people - i find it very, very difficult to pick the right one...
The pressure-to-respond thing also strikes chords - very often, i am much more able to say or do something when i am not being asked or expected to do it than when i am (another possible contributory factor to my libertarian philosophy?). I remember one particular incident when i was cooking for myself and the friend i was living with at the time, when i was literally just about (as in, within half a minute) to start cooking, when said friend knocked on my room door and asked me when i was going to start cooking, The interruption both delayed me starting to cook by about 10 minutes, by forcing me to restart several trains of thought, and made cooking the whole meal a much more stressful experience than if i had not been "prompted" to do it.
I'm not sure how to conclude this post (another of my quirks of verbal communication?), so, er, i'll just... stop here... but, big thanks to Bev for her posts...
Amanda at Ballastexistenz also has a good recent post in the same general subject area here...
Sunday, October 7, 2007
Oh fucking hell, not again.
It was bad enough that it happened once. But now it's happening again - this time to a 15 year old, and this time in the UK.
I still haven't got round to posting my respones to the Ashley X case itself. I ended up as good as leaving Barbelith after trying to articulate the disability rights position on this thread about it, and getting responses such as "I don't think Ashley is a fully human person" (and this on a community which is generally so committed to anti-discrimination on other issues that even getting vocabulary slightly wrong can lead to high-snark mass deconstruction) - feeling so overwhelmed by my need to respond, and by just how personally the horror of this case hit me, as to leave me, ironically, unable to coherently respond. (If anyone reads the thread, i was known on there as "Natty Rajah" at the time, and am currently "Hydra vs Leviathan", in case it isn't obvious).
But still, that was in the USA, and at least part of me thought "that could never happen here"...
Well, it has.
Or rather, will - and this is the crucial thing. Katie Thorpe hasn't been mutilated yet - the surgeons are still "seeking legal approval". There is still the possibility of this being not just condemned, but stopped.
The Disabled People's Movement in the UK needs to get together a response to this, and quickly, while there's still time for this to be prevented. The trouble is, i have no idea how to go about this. Try to dissuade the surgeons? Get human rights lawyers to argue against them? Somehow get Katie away from her parents (since she really deserves to be out of the clutches of "guardians" who want, essentially, to get legal approval to basically sexually abuse her - and hopefully fostered by someone who will love and accept her who she is, and have true understanding about disability)? I don't know. But i know with all my being that action is absolutely imperative...
Katie's parents are trying to justify themselves here - using exactly the same bullshit "reasoning" that Ashley's parents did.
And i don't know what the fuck the Times means by saying "Even some disabled campaigners are critical of them, saying we should focus instead on making society more accommodating to people with disabilities and offer more help to their carers" (emphasis mine)... as if it would somehow be intuitive that "disabled campaigners" would be pro this sort of thing? I don't know who the fuck those "disabled campaigners" are, but they're not any disabled campaigners i've ever met or heard of, and i'd be willing to bet money that they don't exist.
And as for this: "The parents of disabled children, however, point out that such critics are out of touch with the reality of caring for someone with severe disabilities"... for fuck's sake. Out of touch with the reality? How about the reality of being "someone with severe disabilities" (or a disabled person, to use a linguistically sensible phrase)?
Of course there's stuff behind families and "carers" of disabled people feeling burdened, ashamed, etc, to do with the ludicrous financial injustice of them having to subsist on below-unemployment-level benefits instead of getting a fair wage, and disabled people having to rely on family structures for assistance because of inability to get the assistance they (we) have the right to, so in a sense this goes back to Thatcherite economics, and that needs to be recognised. But this is about disabled people having their rights taken away from them, not about non-disabled family members having the right to make decisions about something as fundamental to a person as their bodily integrity, without the person's consent. No financial hardship gives them that right, and nothing, not even the sincere belief that what they are doing is "for her own good", can excuse a parent ordering the mutilation of their child (parallels can be drawn with what routinely happens to intersex or "gender-ambiguous" children here)...
I meant a while back to collate posts by other bloggers on Ashley X. This seems as good a place to do it as any:
Amanda at Ballastexistenz
Thirza at Fit of Pique (possibly now a defunct blog)
David at Growing Up With A Disability
William Peace at Counterpunch
Kate Olsen at The Gimp Parade
Zilari at Processing In Parts (also seemingly no longer active)
a whole load more here...
Edited to add - something really imperative - get Katie a communication aid - give her the chance to say whether she wants this done or not... on BBC Ouch here people are talking about her based on her appearancve of how "out there" she looks - too many people are assumed to be incapable of communication based on appearances, when they simply lack the technology to assist them to communicate... someone give her the chance, even if she doesn't take it...
I still haven't got round to posting my respones to the Ashley X case itself. I ended up as good as leaving Barbelith after trying to articulate the disability rights position on this thread about it, and getting responses such as "I don't think Ashley is a fully human person" (and this on a community which is generally so committed to anti-discrimination on other issues that even getting vocabulary slightly wrong can lead to high-snark mass deconstruction) - feeling so overwhelmed by my need to respond, and by just how personally the horror of this case hit me, as to leave me, ironically, unable to coherently respond. (If anyone reads the thread, i was known on there as "Natty Rajah" at the time, and am currently "Hydra vs Leviathan", in case it isn't obvious).
But still, that was in the USA, and at least part of me thought "that could never happen here"...
Well, it has.
Or rather, will - and this is the crucial thing. Katie Thorpe hasn't been mutilated yet - the surgeons are still "seeking legal approval". There is still the possibility of this being not just condemned, but stopped.
The Disabled People's Movement in the UK needs to get together a response to this, and quickly, while there's still time for this to be prevented. The trouble is, i have no idea how to go about this. Try to dissuade the surgeons? Get human rights lawyers to argue against them? Somehow get Katie away from her parents (since she really deserves to be out of the clutches of "guardians" who want, essentially, to get legal approval to basically sexually abuse her - and hopefully fostered by someone who will love and accept her who she is, and have true understanding about disability)? I don't know. But i know with all my being that action is absolutely imperative...
Katie's parents are trying to justify themselves here - using exactly the same bullshit "reasoning" that Ashley's parents did.
And i don't know what the fuck the Times means by saying "Even some disabled campaigners are critical of them, saying we should focus instead on making society more accommodating to people with disabilities and offer more help to their carers" (emphasis mine)... as if it would somehow be intuitive that "disabled campaigners" would be pro this sort of thing? I don't know who the fuck those "disabled campaigners" are, but they're not any disabled campaigners i've ever met or heard of, and i'd be willing to bet money that they don't exist.
And as for this: "The parents of disabled children, however, point out that such critics are out of touch with the reality of caring for someone with severe disabilities"... for fuck's sake. Out of touch with the reality? How about the reality of being "someone with severe disabilities" (or a disabled person, to use a linguistically sensible phrase)?
Of course there's stuff behind families and "carers" of disabled people feeling burdened, ashamed, etc, to do with the ludicrous financial injustice of them having to subsist on below-unemployment-level benefits instead of getting a fair wage, and disabled people having to rely on family structures for assistance because of inability to get the assistance they (we) have the right to, so in a sense this goes back to Thatcherite economics, and that needs to be recognised. But this is about disabled people having their rights taken away from them, not about non-disabled family members having the right to make decisions about something as fundamental to a person as their bodily integrity, without the person's consent. No financial hardship gives them that right, and nothing, not even the sincere belief that what they are doing is "for her own good", can excuse a parent ordering the mutilation of their child (parallels can be drawn with what routinely happens to intersex or "gender-ambiguous" children here)...
I meant a while back to collate posts by other bloggers on Ashley X. This seems as good a place to do it as any:
Amanda at Ballastexistenz
Thirza at Fit of Pique (possibly now a defunct blog)
David at Growing Up With A Disability
William Peace at Counterpunch
Kate Olsen at The Gimp Parade
Zilari at Processing In Parts (also seemingly no longer active)
a whole load more here...
Edited to add - something really imperative - get Katie a communication aid - give her the chance to say whether she wants this done or not... on BBC Ouch here people are talking about her based on her appearancve of how "out there" she looks - too many people are assumed to be incapable of communication based on appearances, when they simply lack the technology to assist them to communicate... someone give her the chance, even if she doesn't take it...
Tuesday, August 7, 2007
Invisibility
I just found the post Autistic Superpowers: Invisibility by Bev at Asperger Square 8 (which i've just added to my blogroll)... and all i can say is, wow, someone other than me experiences this... and it appears that variants of it are actually a fairly common experience among people on the autistic spectrum...
Invisibility is a phenomenon that i first started observing myself in my teens, and still do. For a long, long time it seriously freaked me out, because it just seemed to be something unexplainable, supernatural, impossible - something that no one would ever believe if i tried to explain it to them...
Ironically, when i was a child i desperately wanted not to be noticed, wanted to be ignored by everyone - would have loved to be, literally, invisible - in fact often fantasised about it - but somehow couldn't help being constantly noticed, watched, paid attention to in all kinds of unwanted ways by absolutely everyone (incredibly, incredibly frustrating when the lengths i went to to avoid being noticed by other people, and the meltdowns i ended up having from constant unwanted attention, got branded by parents and teachers as "attention seeking"). Then, at puberty, i started wanting to talk to, interact with, form meaningful relationships with other people... and almost as soon as i started wanting that, i started being not noticed by people, to the point of sometimes seemingly being quite literally, physically invisible (and even inaudible)...
I remember, for example, multiple occasions in the sixth form common room, at parties, or in any other social situations, when people i was in the room with embarked on the kind of "private" conversations that they would normally only have had if no one else was there. On one occasion i butted into the conversation and was met with a reaction of shock that i was actually present, then asked to leave the room - not angrily, but in a tone of disbelief and confusion that my presence had not been noticed. On others i had been a part of a multi-person conversation only minutes previously, but then after a short pause would find my existence apparently no longer acknowledged by a single other person there (even those who minutes ago had been listening to me and appreciating what i had been saying). This continued all the way through university, even happening in meetings of campaigning societies i was actively involved in.
Many times this phenomenon brought me to the edge of total breakdown, convinced that i was either insane or living in a world of complete irrationality, even feeling suicidal, due to the apparently total lack of any reason or explanation for it: if it was a paranormal "power", it was one over which i had absolutely no control. When i found out about the existence of AS and started seriously considering seeking diagnosis, although i hadn't read anything specific about this phenomenon, it seemed somehow to "fit in"; to be one of the many previously-unexplained things about my life that the autism hypothesis seemed capable of explaining...
I have something of a better idea about how this "invisibility" works now (Bev's post confirms some of my ideas), tho there are still things i can't explain about it (like why it happens in one situation, and then in another situation with apparently identical circumstances it doesn't). I believe it's not so much that people literally don't see me, but that there are "markers" which neurotypical people can percieve and autistic people can't, which "mark" an individual as a "real person". Rather than seeing everyone and everything in a room, as i do, i think NT people somehow scan for "people" first, and don't notice anyone who these "markers" don't mark as a "person". I think this difference in perception can sometimes be overridden by things which unambiguously, by force of reason, mark someone out to "have to" be a person (directly speaking to someone, for instance), but i think that, sometimes (and why it's sometimes, not always, is the thing i can't, but really want to, work out) i'm in the position of not being noticed as a person unless i do something unambiguously "person-like", such as speak, whereas an NT person would be automatically noticed as a person...
Something that IMO makes a very good analogue to it is the keys that the Doctor and Martha wore round their necks to avoid being detected in the second-to-last episode of the most recent series of Doctor Who, which had been treated with a perception filter (which is also similar to the Somebody Else's Problem field in Douglas Adams's Hitch Hiker's Guide To The Galaxy books)...
Sometimes this invisibility/perception-filtering has been useful to me: for example, i've not been noticed by the police at demos, or got away with not paying for a ticket on trains because the inspectors have walked past me without even noticing me (there have been times when i've been the only person on a fairly crowded train not asked for my ticket, and no other passenger has apparently noticed this). However, it has also caused things like cars very nearly running me over at zebra crossings because the drivers apparently didn't see me...
It does strike me that such a "power" could be incredibly useful if it were possible to control it - however, this doesn't seem possible... Also (rather like the Master in that episode of Doctor Who), there are people that it doesn't seem to "work" on - who can see and notice me even when i'm "invisible" to everyone else. Interestingly, i've never, to my knowledge, been invisible to a disabled person (on one surreal occasion i was invisible to everyone in a university society meeting, except for one visually impaired person)... it puts a different spin, however, on the phrase "invisible disabilities"... ;)
Anyway, it's kind of good to see that i'm not the only person who experiences this...
Invisibility is a phenomenon that i first started observing myself in my teens, and still do. For a long, long time it seriously freaked me out, because it just seemed to be something unexplainable, supernatural, impossible - something that no one would ever believe if i tried to explain it to them...
Ironically, when i was a child i desperately wanted not to be noticed, wanted to be ignored by everyone - would have loved to be, literally, invisible - in fact often fantasised about it - but somehow couldn't help being constantly noticed, watched, paid attention to in all kinds of unwanted ways by absolutely everyone (incredibly, incredibly frustrating when the lengths i went to to avoid being noticed by other people, and the meltdowns i ended up having from constant unwanted attention, got branded by parents and teachers as "attention seeking"). Then, at puberty, i started wanting to talk to, interact with, form meaningful relationships with other people... and almost as soon as i started wanting that, i started being not noticed by people, to the point of sometimes seemingly being quite literally, physically invisible (and even inaudible)...
I remember, for example, multiple occasions in the sixth form common room, at parties, or in any other social situations, when people i was in the room with embarked on the kind of "private" conversations that they would normally only have had if no one else was there. On one occasion i butted into the conversation and was met with a reaction of shock that i was actually present, then asked to leave the room - not angrily, but in a tone of disbelief and confusion that my presence had not been noticed. On others i had been a part of a multi-person conversation only minutes previously, but then after a short pause would find my existence apparently no longer acknowledged by a single other person there (even those who minutes ago had been listening to me and appreciating what i had been saying). This continued all the way through university, even happening in meetings of campaigning societies i was actively involved in.
Many times this phenomenon brought me to the edge of total breakdown, convinced that i was either insane or living in a world of complete irrationality, even feeling suicidal, due to the apparently total lack of any reason or explanation for it: if it was a paranormal "power", it was one over which i had absolutely no control. When i found out about the existence of AS and started seriously considering seeking diagnosis, although i hadn't read anything specific about this phenomenon, it seemed somehow to "fit in"; to be one of the many previously-unexplained things about my life that the autism hypothesis seemed capable of explaining...
I have something of a better idea about how this "invisibility" works now (Bev's post confirms some of my ideas), tho there are still things i can't explain about it (like why it happens in one situation, and then in another situation with apparently identical circumstances it doesn't). I believe it's not so much that people literally don't see me, but that there are "markers" which neurotypical people can percieve and autistic people can't, which "mark" an individual as a "real person". Rather than seeing everyone and everything in a room, as i do, i think NT people somehow scan for "people" first, and don't notice anyone who these "markers" don't mark as a "person". I think this difference in perception can sometimes be overridden by things which unambiguously, by force of reason, mark someone out to "have to" be a person (directly speaking to someone, for instance), but i think that, sometimes (and why it's sometimes, not always, is the thing i can't, but really want to, work out) i'm in the position of not being noticed as a person unless i do something unambiguously "person-like", such as speak, whereas an NT person would be automatically noticed as a person...
Something that IMO makes a very good analogue to it is the keys that the Doctor and Martha wore round their necks to avoid being detected in the second-to-last episode of the most recent series of Doctor Who, which had been treated with a perception filter (which is also similar to the Somebody Else's Problem field in Douglas Adams's Hitch Hiker's Guide To The Galaxy books)...
Sometimes this invisibility/perception-filtering has been useful to me: for example, i've not been noticed by the police at demos, or got away with not paying for a ticket on trains because the inspectors have walked past me without even noticing me (there have been times when i've been the only person on a fairly crowded train not asked for my ticket, and no other passenger has apparently noticed this). However, it has also caused things like cars very nearly running me over at zebra crossings because the drivers apparently didn't see me...
It does strike me that such a "power" could be incredibly useful if it were possible to control it - however, this doesn't seem possible... Also (rather like the Master in that episode of Doctor Who), there are people that it doesn't seem to "work" on - who can see and notice me even when i'm "invisible" to everyone else. Interestingly, i've never, to my knowledge, been invisible to a disabled person (on one surreal occasion i was invisible to everyone in a university society meeting, except for one visually impaired person)... it puts a different spin, however, on the phrase "invisible disabilities"... ;)
Anyway, it's kind of good to see that i'm not the only person who experiences this...
Sunday, July 1, 2007
The other story from a "Pillow Angel"
I have a lot more to say about the whole Ashley X story, and am planning to post in detail about it at some point fairly soon - but, quickly, i think this response by Anne McDonald is incredibly important, incredibly powerful and needs to be read as widely as possible...
Anne McDonald's website (edit: the links to her writing all now seem to be 404 errors... not sure why, i think i have seen her website and read some of her writing before... will try to see if it's online anywhere else...)
Anne McDonald's website (edit: the links to her writing all now seem to be 404 errors... not sure why, i think i have seen her website and read some of her writing before... will try to see if it's online anywhere else...)
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