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amorphaCrossposted from LJ. Sort of a rant, because we are really, really sick of seeing this kind of thing.
There are apparently "issues" going around Autism Hub and some of the autistic blogs we read, again. As with last time something like this happened, with specific people involved, it took a while for us to get any kind of idea of what exactly was going on, although we know more about it this time because some people who had been the target of cyberbullying spoke out directly about it. And that (the speaking out, not the bullying) has generated some very productive discussions in a variety of places, about marginalized communities dealing with bullies among their own, and it's given us a lot of things to think about, and hopefully post about at some later time.
But there's apparently a subset of debate that turned up on a couple of blogs, that was questioning the "validity" of some people's experiences and/or diagnoses again, particularly one person who's previously been put on the spot and interrogated about their "validity" far more than any one person should ever have to be. And these debates, as before, were all revolving around whether this person was "low-functioning." What makes it utterly and completely ridiculous to rehash the issue again is the fact that this person has said directly, repeatedly, in several different places that they do not believe in functioning labels. "Low-functioning" is a word that some people have used to describe this person, but the person saself does not see either that label or "high-functioning" as even being meaningful. And yet people continue to debate unchecked as though everything is about whether this person should be forced to "retract" sa's nonexistant claims to being "low-functioning." Or whether they have "misled" others in, again, making these nonexistant claims of being low-functioning.
Just... we should hope we don't have to point out how utterly absurd all of this is, to spin up an entire debate around the "validity" of a claim that someone never actually made-- when they have explicitly stated, in fact, that they don't even believe in the ideas that would underlie such a claim. We don't know how people can read something that essentially only starts with "I have been given the label of X," and then go on to explain in great detail why they don't even believe in the label of X-- and somehow manage to come away with the idea that the person said "I am X."
I mean, it's not the first time we've seen it-- someone going around declaring in a muckrackerish way that "This person says X!", and going back to look at the original source and found that not only were they not saying X, but were explicitly refuting the concept of X. Or the idea that it applied to them, or whatever. But it always makes us boggle about just how selectively you can read to draw such a conclusion. Sometimes it seems they're heavily invested in believing that the person is saying they are an X because they want to be the badass antihero who debunks them or something, or "says what everyone else is afraid to say" or is "the only one brave enough to challenge them." (For some reason a lot of people seem to like thinking that, although it's fucking ridiculous when the person being "challenged" is obviously very socially marginalized, and the wannabe badass antihero is clearly privileged by comparison with them, and therefore will ALWAYS be seen as more credible by the vast majority of people.)
For what it's worth, we are probably sensitive to this particular type of reality-distortion because we have been the target of it before. "This person claims to be a low-functioning autistic" is not much different from "This person claims to be self-diagnosed with DID." Although at least we haven't had people demanding to see our psychiatric records, though we have most definitely known systems who had online bullies try to demand that of them. Plurals, like autistics, tend to attract a fair number of "concern trolls" just by being who they are, of both the wannabe badass antihero variety and the ones who pretend to be so very sympathetic and deeply concerned that you may be tragically misled and/or Hurting People Who Really Need Help (TM).
But in both cases, you take a paradigm or concept that a person/system may not even subscribe to, that they may in fact spend time trying to actively refute the validity of, and spin the debate around and repurpose it to make it all about the person having allegedly claimed to be the concept they don't even freakin' believe in. And/or playing slippery linguistic tricks such as claiming that if an autistic person says they have problems with X and Y and Z this is exactly the same as claiming to be low-functioning, or that claiming to be plural/multiple/median is exactly the same as claiming to have MPD/DID. (Sometimes with extra special appeal to authority mixed in: "Well, MPD and DID/high-functioning and low-functioning/etc are the scientific terms used by doctors! None of these made-up words can possibly have any meaning because they're not the ones used by doctors!" Which in addition to being fallacious is a wonderful [not] mindfuck for a person or system whose thinking starts at several levels below words to begin with, as is not uncommon with some kinds of autistic people.)
For what it's worth, our take on the whole DID thing, nowadays, is very similar to that of the person who's had to repeat again and again that they do not believe functioning labels are meaningful. There was a time when we believed differently, but nowadays, we don't see much real validity in attempts to distinguish between "DID systems" and "functional systems." To us, there's just plurality-- and the issues of whether a system was born that way or split, whether they were abused or not abused, whether they do or don't have an original, can all make far less difference than singlets tend to assume they do. Sort of like how Can Talk Most Of The Time vs. Can't Talk Most Of The Time can make far less difference than most non-autistic people assume it does, in terms of whether two given autistic people will find similarities between their internal experiences, methods of perception and cognition, and ways of understanding the world. We do think distinguishing between subtypes of systems, such as multiple vs. median, or having a main fronter vs. not having one, can be meaningful, but then again, we also think there's validity in the idea of different autistic cognitive subtypes. The lines between the subtypes, however, may not be where outsiders assume they are, or even close to it.
So, no, we've never claimed to have DID, because DID is not really even a meaningful concept to us, or one that we see as having much use, except for getting insurance companies to pay for therapy if you do want it. We have had the labels of DID and dissociative given to us by others, at different points in our life, but we did not continue to hold on to those labels or see them as saying much of anything about our life. Nor do we see the concept of "self-diagnosis" as having any usefulness or meaning here. Even attempts to apply functionality levels to systems is one that seems problematic for us nowadays-- who sets the standards? Who determines functionality? Defining it as "not having constant breakdowns" is not at all the same thing as defining it as "having a job and a car and living independently." (Both are troublesome definitions, though. A person or system may be having constant breakdowns because they've basically been left without any support in a situation they could have gotten through with the right supports. And many people can't have a job, drive, or live independently for disability reasons-- insisting that lack of those things means you aren't "functional," no matter how happy you may be and how well you deal with your general circumstances, is just plain ableist.)
It's just... I can't exactly describe how these concepts are not ones we're even "in," because it represents itself completely nonverbally in our brain. It's like being some kind of amorphous (not a pun, really) energy-being drifting back and forth on the currents of the world, through and around solid objects, while other people argue about whether you live inside of this house or inside of that house, and insist you "retract" statements you never made about living in one of them. To you, the energy-being, the houses are meaningless-- not just the actual houses, but the entire concept of houses, the entire concept of walls. You try to explain how these things have no meaning in the way you exist, and the people you are trying to explain it to can somehow only mishear you making statements about living in one house or the other.
(For what it's worth, also, we're not using the concept of an energy being to imply "higher and more evolved"-- just because Star Trek used them that way doesn't mean we necessarily think such a being would have to be like that. :p Anyway, the whole concept of a "next level in evolution" isn't one we buy into, and biology doesn't support it either. The metaphor was more to convey the idea of something that exists in the same reality with other kinds of life, but moves through and interacts with that reality in a fundamentally different way-- not better or worse.)
Just, it really sucks that people in certain communities keep dragging others out and putting them on the spot time and time again about this, and spread around the idea that "they said they were X!" to the point where it practically attains the status of an urban legend, and forcing them to explain up and down endlessly that this is not the case. Those who have more credibility, power and privilege need to take some goddamn responsibility for the ideas they report and perpetuate about those with less. (Or at least, in the cases of certain people, stop pretending to be anything but trolls and bullies. In a more ideal world, anyway.) It's frustrating because this is a problem we've seen come up time and time again in certain communities, sometimes revolving around specific individuals, sometimes more nebulously around everyone in a given community, but we don't know what to do to prevent it, really. No amount of clear explanation will make any difference when someone is determined to read and interpret something other than what you actually said. Especially when a vast difference in power is involved, and one person's single statement of "They said they were X!" seems to be more influential than your countless statements to the contrary.
...oh, and to add to that, it is even more ridiculous when your taking a person's words about themselves at face value is used as alleged "evidence" that your believing they're telling the truth is part of some grand social and political design, that in reality you would probably not be able to identify or understand if it were going on. Much less join in on it. But saying "I'm not cognitively capable of that" doesn't seem to matter or be seen as worthy of taken seriously, in some places, unless a bully is saying it. (While at the same time accusing others up and down of trampling on their disabilities by the way they communicate, or whatever, and making themselves out to be the supreme victims.)
There are apparently "issues" going around Autism Hub and some of the autistic blogs we read, again. As with last time something like this happened, with specific people involved, it took a while for us to get any kind of idea of what exactly was going on, although we know more about it this time because some people who had been the target of cyberbullying spoke out directly about it. And that (the speaking out, not the bullying) has generated some very productive discussions in a variety of places, about marginalized communities dealing with bullies among their own, and it's given us a lot of things to think about, and hopefully post about at some later time.
But there's apparently a subset of debate that turned up on a couple of blogs, that was questioning the "validity" of some people's experiences and/or diagnoses again, particularly one person who's previously been put on the spot and interrogated about their "validity" far more than any one person should ever have to be. And these debates, as before, were all revolving around whether this person was "low-functioning." What makes it utterly and completely ridiculous to rehash the issue again is the fact that this person has said directly, repeatedly, in several different places that they do not believe in functioning labels. "Low-functioning" is a word that some people have used to describe this person, but the person saself does not see either that label or "high-functioning" as even being meaningful. And yet people continue to debate unchecked as though everything is about whether this person should be forced to "retract" sa's nonexistant claims to being "low-functioning." Or whether they have "misled" others in, again, making these nonexistant claims of being low-functioning.
Just... we should hope we don't have to point out how utterly absurd all of this is, to spin up an entire debate around the "validity" of a claim that someone never actually made-- when they have explicitly stated, in fact, that they don't even believe in the ideas that would underlie such a claim. We don't know how people can read something that essentially only starts with "I have been given the label of X," and then go on to explain in great detail why they don't even believe in the label of X-- and somehow manage to come away with the idea that the person said "I am X."
I mean, it's not the first time we've seen it-- someone going around declaring in a muckrackerish way that "This person says X!", and going back to look at the original source and found that not only were they not saying X, but were explicitly refuting the concept of X. Or the idea that it applied to them, or whatever. But it always makes us boggle about just how selectively you can read to draw such a conclusion. Sometimes it seems they're heavily invested in believing that the person is saying they are an X because they want to be the badass antihero who debunks them or something, or "says what everyone else is afraid to say" or is "the only one brave enough to challenge them." (For some reason a lot of people seem to like thinking that, although it's fucking ridiculous when the person being "challenged" is obviously very socially marginalized, and the wannabe badass antihero is clearly privileged by comparison with them, and therefore will ALWAYS be seen as more credible by the vast majority of people.)
For what it's worth, we are probably sensitive to this particular type of reality-distortion because we have been the target of it before. "This person claims to be a low-functioning autistic" is not much different from "This person claims to be self-diagnosed with DID." Although at least we haven't had people demanding to see our psychiatric records, though we have most definitely known systems who had online bullies try to demand that of them. Plurals, like autistics, tend to attract a fair number of "concern trolls" just by being who they are, of both the wannabe badass antihero variety and the ones who pretend to be so very sympathetic and deeply concerned that you may be tragically misled and/or Hurting People Who Really Need Help (TM).
But in both cases, you take a paradigm or concept that a person/system may not even subscribe to, that they may in fact spend time trying to actively refute the validity of, and spin the debate around and repurpose it to make it all about the person having allegedly claimed to be the concept they don't even freakin' believe in. And/or playing slippery linguistic tricks such as claiming that if an autistic person says they have problems with X and Y and Z this is exactly the same as claiming to be low-functioning, or that claiming to be plural/multiple/median is exactly the same as claiming to have MPD/DID. (Sometimes with extra special appeal to authority mixed in: "Well, MPD and DID/high-functioning and low-functioning/etc are the scientific terms used by doctors! None of these made-up words can possibly have any meaning because they're not the ones used by doctors!" Which in addition to being fallacious is a wonderful [not] mindfuck for a person or system whose thinking starts at several levels below words to begin with, as is not uncommon with some kinds of autistic people.)
For what it's worth, our take on the whole DID thing, nowadays, is very similar to that of the person who's had to repeat again and again that they do not believe functioning labels are meaningful. There was a time when we believed differently, but nowadays, we don't see much real validity in attempts to distinguish between "DID systems" and "functional systems." To us, there's just plurality-- and the issues of whether a system was born that way or split, whether they were abused or not abused, whether they do or don't have an original, can all make far less difference than singlets tend to assume they do. Sort of like how Can Talk Most Of The Time vs. Can't Talk Most Of The Time can make far less difference than most non-autistic people assume it does, in terms of whether two given autistic people will find similarities between their internal experiences, methods of perception and cognition, and ways of understanding the world. We do think distinguishing between subtypes of systems, such as multiple vs. median, or having a main fronter vs. not having one, can be meaningful, but then again, we also think there's validity in the idea of different autistic cognitive subtypes. The lines between the subtypes, however, may not be where outsiders assume they are, or even close to it.
So, no, we've never claimed to have DID, because DID is not really even a meaningful concept to us, or one that we see as having much use, except for getting insurance companies to pay for therapy if you do want it. We have had the labels of DID and dissociative given to us by others, at different points in our life, but we did not continue to hold on to those labels or see them as saying much of anything about our life. Nor do we see the concept of "self-diagnosis" as having any usefulness or meaning here. Even attempts to apply functionality levels to systems is one that seems problematic for us nowadays-- who sets the standards? Who determines functionality? Defining it as "not having constant breakdowns" is not at all the same thing as defining it as "having a job and a car and living independently." (Both are troublesome definitions, though. A person or system may be having constant breakdowns because they've basically been left without any support in a situation they could have gotten through with the right supports. And many people can't have a job, drive, or live independently for disability reasons-- insisting that lack of those things means you aren't "functional," no matter how happy you may be and how well you deal with your general circumstances, is just plain ableist.)
It's just... I can't exactly describe how these concepts are not ones we're even "in," because it represents itself completely nonverbally in our brain. It's like being some kind of amorphous (not a pun, really) energy-being drifting back and forth on the currents of the world, through and around solid objects, while other people argue about whether you live inside of this house or inside of that house, and insist you "retract" statements you never made about living in one of them. To you, the energy-being, the houses are meaningless-- not just the actual houses, but the entire concept of houses, the entire concept of walls. You try to explain how these things have no meaning in the way you exist, and the people you are trying to explain it to can somehow only mishear you making statements about living in one house or the other.
(For what it's worth, also, we're not using the concept of an energy being to imply "higher and more evolved"-- just because Star Trek used them that way doesn't mean we necessarily think such a being would have to be like that. :p Anyway, the whole concept of a "next level in evolution" isn't one we buy into, and biology doesn't support it either. The metaphor was more to convey the idea of something that exists in the same reality with other kinds of life, but moves through and interacts with that reality in a fundamentally different way-- not better or worse.)
Just, it really sucks that people in certain communities keep dragging others out and putting them on the spot time and time again about this, and spread around the idea that "they said they were X!" to the point where it practically attains the status of an urban legend, and forcing them to explain up and down endlessly that this is not the case. Those who have more credibility, power and privilege need to take some goddamn responsibility for the ideas they report and perpetuate about those with less. (Or at least, in the cases of certain people, stop pretending to be anything but trolls and bullies. In a more ideal world, anyway.) It's frustrating because this is a problem we've seen come up time and time again in certain communities, sometimes revolving around specific individuals, sometimes more nebulously around everyone in a given community, but we don't know what to do to prevent it, really. No amount of clear explanation will make any difference when someone is determined to read and interpret something other than what you actually said. Especially when a vast difference in power is involved, and one person's single statement of "They said they were X!" seems to be more influential than your countless statements to the contrary.
...oh, and to add to that, it is even more ridiculous when your taking a person's words about themselves at face value is used as alleged "evidence" that your believing they're telling the truth is part of some grand social and political design, that in reality you would probably not be able to identify or understand if it were going on. Much less join in on it. But saying "I'm not cognitively capable of that" doesn't seem to matter or be seen as worthy of taken seriously, in some places, unless a bully is saying it. (While at the same time accusing others up and down of trampling on their disabilities by the way they communicate, or whatever, and making themselves out to be the supreme victims.)
(no subject)
Date: 2010-05-12 05:03 am (UTC)