Pretty social illusions

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There’s a group of people out there, fairly amorphous to me because I do not keep track easily of who is who (so I hope I don’t get asked who it is), who seem to believe something like this: “If we are nice to autistic people, and we make appropriate ritualized gestures of ‘respect’ towards autistic people, and we get along socially with autistic people, and we meet them halfway, then it does not matter what we do to our children in the name of helping them, because our children are all individuals, and we are meeting these autistic adults halfway by deigning to at least talk to them.”

Some autistic people have been okay with this, encouraged by it. I have been mostly mystified by it.

Despite accusations of idealism from time to time, I tend to be a very practical person.

To my very practical mind, the above sentiments look exactly like “Parents have a right to do whatever they want with their child, all ‘treatments’ are entirely individually-based, etc.” only with lots of ritualistic social posturing all around it to soften the edges.

It’s still a very medical view of autistic people.

It’s still a point of view in which autistic people have very little power.

It’s still a very “intervention” based approach. (I loathe that word.)

It’s still a point of view that gives all the power to people who can decide to do very dangerous things to us whenever they feel like it, if they personally feel that the dangers are worth what they personally believe the benefits are.

There’s just… all the social posturing on top to make it look pretty, and to make those of us who are unwilling or unable to follow or engage in such posturing, look ugly.

I want to be clear on something, in that regard.

When I wrote Neurodiversity is not the opposite of biomed… it was not social posturing of that kind. It was not meant to legitimize biomed in any way. It was simply meant to point out that the concepts that are currently being called neurodiversity have been around longer than biomed, will probably outlast it, and are not concerned particularly with biomed. It was meant to address the self-centered nature of the viewpoint that whenever something autism-positive popped up, it was an attack on biomed, even if biomed wasn’t mentioned.

I did not write that to close some kind of gap, because all the social posturing in the world won’t bridge certain gaps.

People are dying and being damaged because of “biomed”, because of restraints, because of neuroleptic drugs, because of quacks who treat things that aren’t there while ignoring what is there, because of the long-term emotional effects of a lifetime of people trying to “fix” who we are, because of the lack of future planning entailed in a childhood spent with parents sure we would be cured by adulthood, and much more.

I don’t understand why putting a pretty face on the “everything is an individual choice” thing makes it any prettier when I look at the paragraph above. I don’t understand where the meeting halfway is happening. If simply talking to autistic people without overtly doing socially mean things to us is “meeting us halfway,” then I really don’t think that’s good enough. That’s something we should be able to expect, it’s not something we should have to feel grateful for or like people are really stretching to do it.

It seems that some people just want to get along socially because it feels nicer, less unpredictable and unpleasant, etc.

It’s not pleasant for me.

It’s not pleasant for me because I don’t have the kind of mind that can shut out what I see in front of me in favor of beautiful abstract weavings. Not for very long. I’m not even capable of hiding things from myself for very long, not to the extent most people are. And whether the abstract weavings take on the form of the sort of cognitive processes that suppress perception, or the sort of social niceties that obscure reality, they will fall at some point. Whether I want them to or not. It’s not voluntary. Illusions fall apart and I’m left with whatever’s in front of me.

I also lack the privilege necessary to maintain that level of pretence. If I pretended all that mattered, in the same way that many pretend it does, then I would be dead by now.

Neurology and circumstance have conspired to make me pretty unfazed by beautiful complex illusions over the long run. Not that they can’t entangle me briefly, but they fall apart rapidly. “Over the long run” I mean that sooner or later, they go away. Always.

Fortunately, there is plenty of beauty in reality, more beauty than an illusion could even vaguely replicate. But often the illusions cover up the ugly, unwanted, or inconvenient parts of reality. (And when I point out that this is happening, I am often regarded as not appreciating beauty, because I have little tolerance for pseudo-beautiful illusions.)

One often-unwanted part of reality is that no matter how you dress it up, the “Parents have an absolute right to decide what’s best for their child” viewpoint still creates enormous problems for the child. The “Every child is an individual therefore we can do any treatment we seem to think works” viewpoint still allows for many dangerous treatments for non-existent conditions, or dangerous and unreal treatments for existing conditions. All of these viewpoints tend to take a fairly individual or medical approach to autism, which in turn creates its own set of problems.

I see people doing the things that they’ve always been doing, but adding a few words here and there and claiming that now it’s okay because they’ve added these words, see, these words of respect, or something. The pretty social illusions, the shows of “respect”, the attempts to avoid open conflict while still doing the same old things… they do not change the fundamentals.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

11 responses »

  1. This is exactly what eventually caused me to quit. I couldn’t reconcile what I was doing with the philosophy I had developed (and am still developing, to an extent). I couldn’t see the “respect” in the new techniques I was learning. I couldn’t see how it could possibly be a good thing that one of the children I do respite for shut down in the presence of a former ABA therapist, who seemed like a perfectly nice person… but he is usually much more animated, much more friendly, than he was when she was talking with him.

    I dislike the hypocrisy of this, also. I dislike being a hypocrite. I prefer to be genuine. I feel more able to be genuine now that I’m not engaged in hypocrisy every day of my life.

  2. It is a terrible world when being nice to somebody of a different neurology is not out of the kindness of your heart, but an intervention agenda, whether obvious or disguised.

    I could not do that sort of pretending either, and I could not live with myself morally if I could or did, ever.

    Good for you Janna. I wish you the best in your life for now and for always. Glad you’re no longer to co-opt with the social illusions.

    And the horrid thing is that people aren’t even aware of them. What is worse is that people ARE aware but aren’t going to do anything about it. It seems like autistic people staying powerless is like a priority for them. I worry.

  3. It’s sad to see some (all?) of the autistic adults who work with ASA sort of getting inured to the whole experimentation biomed stuff. They don’t seem to be saying anything negative about ASA’s message which is ugly, ugly, ugly.

    They need to play nice and “get along,” apparently.

    Personally, Autism Diva thinks they’ve sold out. Maybe they don’t realize it, though.

  4. Last I knew, the ASA had made that “parents have the right to decide…” thing official policy a long time ago, that they would not endorse or condemn any “treatments” so as to be fair to parents. That has of course led to things like failing to condemn outright blatant anyone-would-know-it-you’d-think torture.

    Although the interesting thing about torture, is it’s a common thing but very little is ever done about it, anywhere, no matter where it happens. Because, among other things, torturers are nearly always well-respected people, and torture victims are nearly always devalued people. (I’d recommend the book Unspeakable Acts, Ordinary People by John Conroy for more information on this.) And there’s always some justification for the torture that sits well in the minds of most people.

    (In the wake of the publicity around Abu Ghraib and Guantanamo, I have wondered how many Americans will see all the similar acts in their own neighborhoods. There’s very little out of those places that I haven’t seen myself in respected disability institutions or heard of from others there.)

    But all that about torture is kind of a side-note.

    I also find it sad and disturbing how many people end up accepting things that are dangerous and/or unreal, to “get along”. It shouldn’t be necessary to have to accept those things and take an “anything goes” sort of stance in order to get along with people anyway.

  5. I also find it sad and disturbing how many people end up accepting things that are dangerous and/or unreal, to “get along”. It shouldn’t be necessary to have to accept those things and take an “anything goes” sort of stance in order to get along with people anyway.

    It’s the abuse factor. You know it well, I think, Amanda. The phenomenon wherein a person begins to believe that s/he deserves the abuse and may even begin to seek it out. The other part of that is the people who are enabling the abuser – often because they don’t want to be the next victims.

  6. Well, I’m glad you said it. I’ve been trying to say it and getting slammed for saying it. But you said it, it’s about words, meaning and manipulation of language.

    Talking the talk ain’t walking the walk. All words are not “one-size fits all,” and I’m getting mighty fed up with it.

    Thanks for this great post. Sometimes we can’t always be the diplomat.

    Estee

  7. Another way to look at “intervention” is that it shares some of the same Latin root words as “invention,” both being formed via a prefix (inter, in) and the word for “come” (venio, venire, veni, ventum). And if an “intervention” is a “coming-between,” then an “invention” is a “coming in–an entering–a finding-a discovery”—of the new and yet in-known.

    The word I grew up hearing was “assimilation,” as in it being best to become a “banana” (yellow on the outside, white on the inside). Cultural thinking as far as raising children of diverse ethnic backgrounds has changed a great deal on this front and we are all slouching towards something, I think, in our diverse ways, together.

  8. I am a person who fell into an illusion, there were three bricks taken out on my grandfather wall on the back poarch, with solid bricks all around them. I forgot about the holes being in the wall and someone was walking by In The Dark, and the shodows came through mt mother came in about ten minutes later when it was still Dark outside. We spoke about her life and she asked me “What,s going on”? I then said “I saw extra terrestrials on the poarch”. She then called crisis intervention , they came over and I was admitted to a psych ward. It took 15 years to realize that there wre hole in the wall to create thia illusion. Well thank God there were two doctors who took me off all medication completely. I guess this will be a story that I,ll have to tell people my whole life. Because I do recieve ss-di. But I will be a professional golfer. Hey man thanls for listening, and by the way I have been a Dead Head for over twenty years,and Isaw The Grateful Dead live too in Phily I think in 1992. I,m from Hershey P.A. You mat tell anyone you like about all of this! Have a Grateful Day! Love Dan

  9. We have something kind of related to this on our own blog…..called First Impressions…..not exactly this issue but the theme is similar….how being pretty is somehow important for people to want to interact with someone. It’s semi-related, I think…

    Part of the problem with society as it is now, is BECAUSE of superficial “reality” or ideals being more important than what’s actually going on.

    Instant gratification is another thing. Some parents of autistic children who try all kinds of treatments want instant results: kids behaving better, whatever that means, and whatever the cost ends up being.

    You may not be diplomatic but you know how to write in a way that most reasonable people will at least read and not feel somehow unjustly attacked. Notice I said REASONABLE people. Curebies and quacks don’t count.

    Sometimes I can’t even write the things I want to in my blog because all that comes out is wrathful ranting. I’m sure I’m not the only one, who could be the autistic advocacy movement’s equivalent of Rev. Jesse Jackson or Rev. Jeremiah Wright.

    When I feel that angry, I don’t write anything that could be found and possibly used to prove

    Ivan

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