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2:53am June 27, 2014

amorpha-system:

solipsistful:

epochryphal replied to your post “epochryphal replied to your post:where’s thomas, i need to whine at…”

*squints* * tilts head* well. then that’s a medicalized/assimilationist dichotomy? which doesn’t leave space for, non-western medicine, and self-diagnosis, and social model of disability and needs for accommodation, and crit analysis of the dsm as text?
i guess i have built a very high Wall for myself of, what is Inherently assimilationist / colluding with oppressive structures, versus behaviors and words that reify them? like, gayness is not inh. assim., the marriage fight debatably, homonormativity yes

well i dun wanna reify oppressive structures either. :(

i think part of it is that there are still discussions that i really want to have happen. like, should i consider multiplicity a disability, under social model thinking? i don’t really, but maybe that’s cause i’m the core and like 80% of our front mask and so it might be a bit different to Thomas or Serpent. but i do consider it neurodivergent, because how in the world could this neurotypical??

but any talk of ableism and how multiple systems that don’t consider ourselves DID navigate it / might be affected by it** has basically been put alongside “kinphobia” in terms of forbidden-ness.

** beyond “this is an ableist idea” period. let’s actually discuss where non-medical approaches to multiplicity might repeat ableist ideas. where non-DID/DDNOS systems might ignore their problems to “prove non-disordered multiplicity”. how we navigate being defined quite often as “crazy” while still prioritizing folks with DID

(then again, as i’m typing this, it might be a bit of a moot point? i don’t think i know any non-DID systems, at least personally, who don’t experience ableism for something other than multiplicity. so what does it matter if multiplicity alone is “sufficient” to make one neurodivergent?)

i have half the mind to delete this post but i guess i’ll post it anyhow.

- Ace

The “ignore your problems to prove plurality doesn’t have to be a disorder” thing was a lot like what happened to us in Pavilion, actually. And it was awkward, because… looking back on it, probably *everyone* involved there had some kind of PTSD, which was what made for part of the clusterfuck it became, I think. But we were being told we “acted traumatized and dysfunctional” or “acted like we couldn’t do things because of past trauma” (and honestly I’m not sure where people were getting that? We were nervous about being sent to do activism in places where a bully had been badmouthing us to other people behind our backs, and someone thought that we were “claiming we couldn’t do it because of childhood trauma,” when it had nothing to do with our childhood and everything to do with incidents that had happened about a year before that.)

But yeah, the “prove your functionality” thing, as it played out there, was very ableist. And I have to admit we had a hand in perpetuating it, because we were hanging on so hard to the idea that this was our “big break.” I think the real problem was that most people seemed to be agreeing that “functionality” should be measured by a person’s external accomplishments— that you needed to have a degree, a job, a car, etc, or be working towards those things, and that it didn’t matter whether you were coming home every night spending hours crying from overload, or strung out on medication or alcohol trying to calm the overload (which a lot of apparently “assimilated” autistic people end up doing). You just needed to Have Those Things, and it didn’t matter what the cost of Having Them was, which led us to try doing a lot of things that weren’t good for us in any shape or form because we believed they’d make us seem “more functional” and “less autistic.”

And the line between “being functional” and “being non-disabled” was obfuscated a lot in a way that’s disturbing in retrospect. In theory, we were told “Just make sure that you’re working on your problems, if you have problems.” But this also, at various times, turned into “work on your problems and don’t talk about them; don’t even mention that they exist, because that will give off a bad image.” There was a specific image we were all trying to avoid giving off, and that image had mostly been created by people who were being deliberately infantilized by their therapists. But there got to be a kind of paranoia about it, where we were told even minor problems made us “look nonfunctional.” And we knew at that time that no matter what people said, there was no way to make autistic people be non-autistic, but we had kind of deluded ourselves already into believing that we could teach ourselves to “look indistinguishable from normal,” and Pavilion just ground it in— that the goal of our life was to appear as non-autistic as possible to others, no matter what the cost to us (and that trying to ignore our PTSD issues or forcing ourselves into exposure therapy would make them go away, too).

This isn’t “getting revenge” on anyone involved, either, fwiw— I’m not naming names for a reason. I just don’t want to see anyone else end up in the situation we were in back then, where we thought it was okay to make almost any kind of sacrifice if we thought it would make us look “more functional.” There was also something going on where one of the groups telling us that we “didn’t look functional enough” was being “mentored” (emphasis on the quotation marks there) by someone who had a huge amount of control over Pavilion at one point, and this person’s “advice” was to not allow us to do anything important because we supposedly looked bad and nonfunctional.

Actually, for whatever reason, some of the people we’ve met who judged others most harshly about whether they “looked functional” and would tell them “you could do this if you wanted to, you’re just evading responsibility” were abuse survivors themselves. There was a bully on lj-multiplicity at one point who would yell at everyone constantly about whether they were “functional,” and the fact that we didn’t override the co-mod and ban her is one of our biggest regrets. She was one of those “I pulled myself up by my bootstraps, so anyone can” types, and was always emphasizing her disabilities and her abusive past to claim that they supposedly didn’t hold her back in any way. She was also really into anti-psychiatry as an ideology— not the kind by/for patients, but the kind promoted by people like Peter Breggin, whom she was always linking to, and claimed that if you were in therapy or psychiatry, you could never be “functional.” That was actually one of the things that made us decide that the terms functioning and functionality, as applied to disabled people, were so vague as to be meaningless and could be twisted to mean anything that people wanted them to mean. (I mean, when they’re used to refer to life circumstances and not things like “this part of my body doesn’t function normally.”)

This sounds a lot like segments of the autistic community, where being basically as much like the stereotype of the high functioning aspie as you could be, became a big thing.  Because people wanted to prove that autism itself wasn’t a problem, at all.  And people would become very pissed off if you pointed out that there were autistic people who flat out couldn’t do certain things, no matter what environment you put us in.  I felt pressure to conform to all this at times, to the point where I became afraid to even refer to myself as having deficits at all.  And I could never be shoehorned into the image of ultra-high-functioning in a million years, you just couldn’t make that case at all, even at my most functional in childhood.  I just don’t fit the bill, if anyone does.

But there was still pressure to see autism as 100% positive, as not coming with any real limitations, none that mattered anyway.  Although, one interesting thing about that… sometimes it was “none that mattered, anyway” in a big way.  Sometimes it was buying totally into the idea that autistic people couldn’t read emotions, but saying that reading emotions was a stupid NT thing that only stupid NTs needed to do.  And there was a lot of that too, like saying that if we couldn’t do something then it was a worthless NT ability that was only considered important because NTs could do it.

One of my friends claims that all oppressed groups go through a stage like this and that it’s necessary for growth.  But let’s just say that I coined the words autistic/aspie supremacy for a reason, and I coined them as far back as 1999 in an attempt to describe what I was seeing, to my therapist.  It may not have been the best choice of words, but hell I was 18 and barely starting to get a foothold into true, sustained linguistic communication in certain ways, give me a break.  But they really came into their own much later than 1999, in 1999 they were isolated and scattered.  It was later that you got more and more of them clustering around their own web boards and stuff.  A lot of the “Aspergian” stuff was centered around ideas like this.  

(For those who don’t remember:  There was this place on the web called Aspergia.  They believed that autistic people needed a mythical backstory, so they wrote about this island called Aspergia that people with Asperger’s supposedly came from.  From the very beginning of their web board, they talked about the need to distance themselves from the whole concept of autism and autistic people, because Aspergians were more functional than that.  I became very pissed off at them and they were very condescending to me about it.  I later hung around their web board in a perverse attempt to inject a little bit of “low functioning” into their ultra-high-functioning world – not that I see myself as LFA, but you know what I mean.)

Anyway that was only one group.  And even within that group, there were reasonable people and then there were true believers.  That was true of any group.  Aspies For Freedom had its share of aspie supremacy as well.

And honestly… there were strands of it even within ANI, and I don’t think ANI developed this on purpose.  But what happened was that most of the people involved in ANI, although not all, were people who had university degrees and all the trappings of success and passed reasonably well, and this grew into a culture where those things were part of it, even though nobody exactly had the intent to form such a culture.  Some of them have been rather self-conscious about that culture and the way it excludes some subtypes of autistic people, to the point that when I used to talk about it, people assumed that I hated ANI and Autreat and was trying to badmouth them on purpose.  Like all I wanted… all I wanted then and now… I wanted to see more people have access to the beautiful things that happened at Autreat to people who were of the ‘right’ subtypes to get the most out of it.  I wanted to expand Autreat until it was accessible to a larger range of people.  But that wasn’t to be, and now I doubt it will ever be.  The party line was that they’d had “LFA” people there from the start, which was true, but the level of inclusion that such people experienced was… not what they thought it was.  A good friend of mine had a very high-up person at Autreat refer to them as “low functioning” in front of others, and felt very uncomfortable ever coming back.  I knew a lot of people who couldn’t fit the mold and never came back, some of whom were branded as troublemakers.  I was branded as a troublemaker for awhile myself, because I was pointing out flaws, sometimes not with the best social skills but what do you expect out of a young and somewhat angry autistic person?

Anyway… I see a lot of parallels between the functional plurality movement, and certain segments of the autistic community who believe that in order to prove autistic people’s worth to the world, you have to either pretend people like me don’t exist, or repaint me in their image and ignore that I have severe problems that none of them will acknowledge as really having anything to do with autism.  

That was the other thing… if you did have severe problems functioning they’d try to blame something else, or blame you tell you it was your own fault.  I was accused of “wallowing in self-pity” for being unable to eat.  They said that I must have a death wish if I could starve with food in the house.  I explained the extent of my sensory and motor problems and they told me it wasn’t real, and that if they could overcome things like that then so could I.  (The person I was talking to… I doubt he has ever had a day in his life with that degree of sensory or motor problems.  He just wasn’t the right 'shape’ cognitively for those problems to make sense.  He was just trying to act like he’d overcome all this and therefore so could I.)  And the self-pity I supposedly had… it wasn’t that I had self-pity in recollecting my problems, it’s that they actually thought that my functioning problems came from a combination of self-pity and a death wish.  Because autism couldn’t possibly cause functioning problems that severe.  I told them about people with such severe motor problems they couldn’t even scratch their noses when they itched, and they flat would not believe me.  It was horrible to go to great lengths to describe how all this worked, only to be told it was my own problem and that I could’ve fixed it if I wanted.  

A whole year of starvation and there was no reason for me to suffer like that, I could’ve just become functional if I’d starved a little longer.  They actually told me that.  They told me my problem was that I’d gotten services too soon.  That if I’d actually been left to my devices for even longer, I’d have gotten tired of starving and then learned the skills to feed myself and clean up my apartment and lose the incontinence and stuff.

Which shows a total lack of understanding of how those things work, which is why I seriously don’t believe the guy who said that’s what happened to him.  Or at least, I don’t believe any situation he got himself into was as long-term or as severe, or for the same reasons.  Because when you’re starving, and I mean long-term starving, not that initial stage in starvation where you are more alert so you can find food – your cognitive abilities go on the fritz in a major way.  You become less and less functional, and that, for me, meant less and less able to make sense of my sensory environment, less and less able to recognize food or the need for food, less and less able to recognize that anything inside a cupboard existed because the cupboard wasn’t a cupboard it was just a flat wall, and so on.  And the more cluttered and messy and disgusting my environment is, the less I’m able to do visual processing and other sensory stuff, and the worse my motor issues became.  I am certain this guy didn’t have the kind of sensory or motor issues I did, not only because of this, but because he repeatedly needed them explained to him in ways that nobody with the problems would ever require an explanation.

But his whole thing was “I was thrown into adulthood all on my own, it was a little hard for me at first, but I overcame it.  If you didn’t overcome your problems when you were thrown into adulthood, it’s because someone rescued you before you became desperate enough to become functional.  So you should go back to living without services, because nobody intelligent enough to have a conversation like this needs the amount of services that you receive.  You just don’t want to be independent, you just want to be taken care of, you don’t want freedom enough to take it.  And any explanation you give is just self-pity, everything I’ve heard from you is just self-pity, any reason you were starving was just self-pity or an unconscious death wish.”

It was so frustrating.

I wanted people to know there’s this whole world of autism beyond their little subtypes, and they did not make it easy.  Especially with people like him around to explain sensory and cognitive and motor issues as either psychological or nonexistent, or due to some other disability. Never autism.

Higher functioning than thou pisses me off in any form.  (So does lower funcitoning than thou, but that’s not what we’re discussing here.)

Oh and don’t get me started on places that call themselves the “HFA/AS community” and assume that everyone who could go there would be “HFA” or “AS”.  I always made a point of saying that my diagnosis was just autistic disorder, no HF in front of it, never has been an HF in front of it, occasionally an LF or severe in front of it, but mostly just autistc disorder, and that I didn’t appreciate being left out of the name of the frigging community just because they assumed anyone who could make it there would be considered high functioning.

(Note, yet again:  I reject functioning labels.  Some people have called me LFA, including some professionals, but this does not mean that I’m taking that label on myself.  But I do see myself as someone who struggles in a lot of areas that are unfamiliar to a lot of people in the autistic community, and therefore I sometimes see it as my duty to remind them that people like me do exist in the world.)