Breathtaking to behold: talking back to dismissal

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One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

It’s breathtaking because we haven’t reached that point in some of the communities that I work within, including the autistic community. It’s like we’re almost there, but not quite. So a small number of us end up sticking our necks out and a large number seem to either understand but not be able to articulate it, or else not understanding yet what’s going on.

This isn’t because we’re too autistic to understand (which is in fact one of those obnoxious power plays, rather than a reality), it’s because as a community we’re just not quite there yet knowledge-wise. It’s been like this for other communities in the past, it doesn’t have to be like this for us forever. I don’t always even have coherent answers to a lot of what goes on, because this is not easy work by a longshot, but I think it’s work worth doing.

What would be cool is if eventually we all just automatically understand what is going on when people say certain things to us, and from that understanding (plus some time for thoughts to congeal into words), know what to say and how to react. My problem half the time is understanding but not knowing the words.

But imagine that, if anyone ever told us…

…”You’re not really autistic.” or “You’re not really autistic enough.”

(“You just have Asperger’s,” “You’re too high-functioning,” “You understand your situation too well,” “You’re too articulate,” etc.)

…”You’re too autistic.”

(“You lack the empathy necessary,” “You couldn’t possibly understand,” “You lack theory of mind,” etc.)

…”You’re too much like children and confusing us with your parents, somehow.”

(“You’re just like adolescents rebelling against their parents without understanding why the parents know best,” “You’re just like small children who can’t possibly understand the adult world,” “You’re just like little children who want to do whatever you want and can’t understand why your parents don’t want you to do that,” etc.)

Etc.

…then there would be an immediate, coherent response to each one, explaining why this is not an okay way of treating us or viewing us, explaining how the misdirecting of other people when it comes to us works, explaining why this is not okay… voiced by enough of us at once that it would be harder to ignore than the current sporadic response to it.

We’re getting there. See Bev’s Are you autistic? and I repeat myself. But we’re not there yet. And it would be wonderful for a lot of us to work towards this until we are, until we can throw answers back at that stuff easily. Because I’ve been watching these comments thrown at self-advocates for ten years and they never truly change in substance.

[Note also that I’m not going to be taking comments that actually try to explain why those particular ways of dismissing us are actually real or good or right. So don’t bother. Because this blog is about how to work towards this kind of change, not about getting the conversation derailed by people who think we shouldn’t even be trying to.]

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.

21 responses »

  1. I’m glad you posted this, and want to add a couple of things I’ve had thrown at me. Mind you, this isn’t about any of the big life-or-death issues you’ve written about; my situations are not such a big deal, but having it happen all the freakin’ time wears on me. (And presumably others are in the same situation.)

    Right now, the disability office at my college is serving up these classic tropes: “You must have provoked them, or they wouldn’t be rude to you,” and “You need to understand how unusual your needs are for others to comprehend.”

    Yeah, my totally unusual needs like having a classroom without people yelling back and forth at the back of the room. And my provoking them by asking if they could please keep it down so I could hear the instructor. I also provoke people by acting too autistic, and had a major drama episode in my personal life off campus.

    Another trope that’s bothering me is “They’re not discriminating against you because you have Asperger’s; they’re just reacting to the way you act, and you have to understand what that looks like to them.” To me this sounds as though he is telling me I am only protected from discrimination on the basis of disability if I do a good enough job acting as though I don’t have a disability.

    I’m not allowed to have any communication assistance dealing with the university (such as having their office call the professor who won’t maintain order in the classroom) because this will foster dependence. That’s why the university requires all students to self-advocate…. which means that if you have problems with language, or your professor has an attitude about students being uppity and asking him to do things for them, you don’t get your accommodations or even fair treatment.

    The noisy classroom issue is the #1 concern across multiple disabilities and probably affects non-disabled students too. You’d think that if the disability office can mandate how to post your course notes on the Web accessibly, they could mandate that instructors keep students from being disruptive as a similar “universal accessibility” feature to students who have problems with language, hearing, attention, etc.

    I am glad that my thesis advisor is a kind and supportive person, even though he doesn’t know a lot about Asperger’s. He doesn’t have time to fight all my battles for me, though, and it isn’t his place. I’ve had other instructors who are helpful, but a few of them just don’t get it. Most are nice, though, so I should give them credit.

  2. I suspect this post is indeed getting at something that has been missing or not well executed in the ongoing autism-oriented discussion in a lot of places.

    One way I see it is like…there are lots of people (autistic and nonautistic alike) all fighting over little scraps of privilege. And the problem here is not really, as many seem to think, that there are only these tiny, finite scraps available and that it’s all very zero sum as to who ends up with any chance of being taken seriously or supported or understood.

    Rather, the problem is that the appearance of there only being tiny scraps is itself a kind of illusion.

    Whenever people claim that autistic people need to not exist because “we can’t change society”, this is evidence of this illusion.

    Whenever people claim that if autistics who can type well get taken seriously, autistics who cannot speak OR type will be left without any support, this is evidence of this illusion.

    Whenever people try to reduce the difficulties facing autistic people today into a “to cure or not to cure” dichotomy, that’s evidence of the illusion too.

    And of course, the whole “so-and-so is a fraud!” thing (which I have always found utterly distasteful no matter WHO is engaging in it) is another manifestation of this illusion.

    I have been interested in counteracting this illusion for quite a while now. I haven’t know how to do it before and I am not sure I do now.

    But one thing that occurred to me today, which now seems really obvious, is that there are plenty of historical examples to look at in which the struggles of various minority groups reveal uncanny parallels.

    E.g., the following from Frederick Douglass’s writing seems appropriate:

    “People doubted if I had ever been a slave. They said I did not talk like a slave, look like a slave, nor act like a slave, and that they believed I had never been south of Mason and Dixon’s line. ‘He don’t tell us where he came from — what his master’s name was, nor how he got away; besides, he is educated, and is, in this, a contradiction of all the facts we have concerning the ignorance of the slaves.’ Thus I was in a pretty fair way to be denounced as an impostor.”

    To me this kind of thing is just…really strong evidence that whatever forces in a community of persons compel some to spend all their time and energy trying to prove that some of those speaking up should in fact be silenced due to a supposed lack of legitimacy do NOT stem from anything a spirit of real inquiry or justified “concern”, but rather from, well, fear and a few other things most likely. I think that once the overall population of autistic people and people who are somehow associated with autistic people comes to grips with the fact that we are all citizens of a much, much larger world than the arguments we are often trapped in, things will be a lot better, and the illusion that our time OUGHT to be spent competing for scraps will fade away at last.

  3. This quote says something important (it’s part of an article about a kid whose rich parents with plenty of services dumped him at a hospital):

    On New Year’s Day I tried a little experiment. I was out for brunch with a group of gay men (Brunch, for gay men, is a town hall meeting.); I knew that one of the men had been placed into a private psychiatric institution when he was 12 or 13 years old so that he could be cared for by professionals. The professionals would be able to fix him. He would learn to love differently.

    I knew his story from years ago, and during brunch I brought it up. He, having a lot of distance from this now, took my opening and told the story himself, replete with descriptions of his incredible sense of abandonment and rejection by his parents, with whom he has never really reconciled.

    After he was done I used the language I’d heard being used to excuse the Kelsos. I said, “Well, we need to understand where the parents were coming from. They might have been suffering from some kind of shock to the discovery that their son was gay. They might have felt that they couldn’t be expected to raise him, that his care would be better done by professionals . . .”

    I didn’t get any further. There was an eruption at the table. People were furious that I would even suggest that abandonment was an appropriate response to the discovery that your child was gay. People shrieked — I’m not exaggerating — that a lot of street kids are abandoned gay kids, abandoned by parents who “couldn’t cope.”

    Yes, I expected this reaction. What I was really interested in, while I was being chastised, was the look of absolute peace that came over the man whose story prompted this discussion. He was basking in the understanding and support of his friends, his community.

    How must it feel to be a 10-year-old abandoned by your parents?

    But there’s another question we need to ask ourselves: How must it feel to be abandoned by your community?

    That last line, completely. That’s the problem that happens in the autistic community, among others: When this kind of shit happens, people do the thing you talked about, scrabbling for tiny scraps of privilege, instead of genuinely supporting each other.

    (And I remember people in the gay community saying that if I’d been in institutions for being gay it would have been awful, but since I was in there for being autistic/crazy/burned out/etc. then it was okay. WTF. And there are people in the autistic community who would say the same.)

    Anyway, that whole article is viewable here, it’s by Dave Hingsburger.

    I thought I’d already written a reply to you, but I guess I didn’t. So I’ll try again.

    Anyway, what I was going to say… is that I’ve seen a lot of communities pull away from the competing for scraps thing. Not everyone in them, but a sufficient number that they can handle the crap being thrown at them and put it in perspective.

    And autistic people have a great resource: the general disability community. That community has already done a lot of the work that autistic people need to do. In many ways we can just apply that stuff to our own situation, since we’re just one possible way that disability can play out. But a lot of people haven’t seen that work, or don’t want to be associated with disability, etc. etc. etc.

    The ones who have been immersed in generic disability stuff seem to see the world differently, more the way I do. They see that these little circular “debates” people keep getting trapped in are traps. The traps fade in importance and the important things come to the foreground. That’s what happens once you understand the situation. And once you understand the situation, you are far more equipped to deal with the nature of the traps and put them in the exact place they deserve to be put.

    The problem also is that this includes having to be willing to say things that to some people are really unpopular. A lot of people are too busy looking for some scrap of belonging to want to do that. They’re afraid of offending people with more privilege, the ones who frequently pull these head games on us.

    And they are head games. They are not valid. They are not legitimate. There is absolutely no tiny piece of legitimacy in any of these arguments. They are simply power-grabbing maneuvers — send the self-advocates chasing their tails again, rather than standing up to you and saying “the whole argument is wrong and I won’t participate other than to name exactly what it is you are doing and exactly how far it is from what should be going on”.

    I see autistic people backing away from the ones who are being attacked, trying to prove they are okay, not like those ones who, you know, cause trouble. That’s part of the trap.

    When someone prefaces everything they say with “but I only have Asperger’s,” that’s part of the trap.

    When someone (usually because of terror) kisses up to those in authority and deliberately becomes the “good autie” to other people’s “bad autie,” that’s part of the trap. (“Oh I would never put parents in the position of having to think about whether what they do is right…”)

    But the terror is being handed to us and made into our own, it’s not really our own innately.

    And the terror lessens the more you realize you’re still there after you do something people hate.

    And it often falls away completely when you can see your small part in how the world works in general, and when you can see the situation as it is rather than as people try to make it seem.

    And when you can see that the multiple-choice garbage of the attempt to suppress dissent looks like, “You self-advocates are too rude, too autistic, not autistic enough, too stupid, too intelligent, too…” etc. Then you can see that it’s just this little wavery thing flickering in the air trying to suppress something solid and genuine.

    And then you can begin to see the way out of all this.

    Which is not to submit to debating whether you’re autistic enough, intelligent enough, non-autistic enough, or whatever.

    But to declare the entire debate not only invalid but offensive. You step out of that endless loop of trying to prove things, and you see again that this is a power play, and you say so, and you say why, and you get on to the important stuff.

    And the important stuff is the basic stuff that’s important to everyone. Justice. Equality. Freedom.

    But to promote justice you have to say there is injustice and how to get rid of it, and that doesn’t make some people very happy, especially if they’re being part of the problem.

    And I think there’s a real fear of making people unhappy, a fear that they’ll run off and leave us.

    And that fear is probably justified in some ways. I can’t count the number of pseudo-allies I’ve known, who seemed fine, but then ran off when things got difficult.

    A real ally tries to work against that kind of fear. By which I mean, not suppressing any mention of such fear, but rather making it so the fear is not needed, by making it clear they are really committed to struggling alongside us, rather than nursing a wounded ego when we become unsure of them. (Nothing spells “pseudo-ally” faster than being snapped at with no apology later, the moment one declares something other than total trust.)

    But my knowledge of this stuff is the product of ten years of extreme devoted interest in the patterns that create these problems. Because of that, I’m not sure how easy it is to pick up overnight. (Maybe other people are more able than me in that area, maybe some aren’t, I just don’t know.)

    But… something has to go in that direction because sticking in the same repetitive loops is not progress.

  4. I’m a newly diagnosed 51-year-old autistic woman.
    As I was reading this post and the comments on it, I began to notice my visceral reaction to any sentence that begins with the word “You,” as in “You’re not autistic enough” or “You have to understand…”

    When a person in a situation with conflict and/or a (real or perceived) power inbalance begins a sentence with the word “You,” that person is generally trying to get into my head, and that is a place that I do not let people go anymore. It’s a boundary violation into sacrosanct territory, and I treat it as such. My response is generally to say, “Do not ever try to tell me what I am thinking or how I should be experiencing the world. That is my job, and my job alone. If you continue to violate my boundaries in this way, I will discontinue this conversation. If the issue between us is unresolved, I will seek resolution elsewhere.”

    Accepting the speaker’s point of view and arguing from there is out of the question. Attempting to educate the person is out of the question. They’re not interested in being educated. The statement is just a set-up to put me in my place or to maintain the speaker’s sense of the status quo. Any of these kinds of statements implies that someone knows me better than I do, and I reject that kind of thinking entirely.

  5. “Accepting the speaker’s point of view and arguing from there is out of the question.”

    Indeed. That would be surrendering without good cause.

    “Attempting to educate the person is out of the question. They’re not interested in being educated.”

    Absolutely accurate appraisal. This is exactly how it is. I’ve met many – in real life and on the net – who have this incredibily odd attitude.

    “The statement is just a set-up to put me in my place or to maintain the speaker’s sense of the status quo.”

    There seems to be this irrational need on their part to defend their own erroneus understanding against the understanding of someone who knows the situation better, and this defence mechanism involves a very complex set of psychological defences involving denial, projection, downward social comparison, disparagement and reaction formation.

    “Any of these kinds of statements implies that someone knows me better than I do, and I reject that kind of thinking entirely.”

    Yes, you’re right; and I feel the same about it.

  6. Yeah, a lot of the arguments that are used to keep people down are the same. I see a lot of similarities across all movements. I tried putting some of that in words.
    http://cereus-sphinx.livejournal.com/7870.html
    It would be nice if people could see the big picture, instead of fighting to include a few more splinters of the general populace every generation. It would be nice if people would just start listening to everyone.
    Otherwise we’re going to have to keep struggling… and our children… and our children’s children… and their children….

  7. Amanda: to your knowledge, has anyone ever done a presentation about this issue at Autreat in the past?

    If not, it NEEDS to be done, by someone. I didn’t read this entire post because of overload lately and text processing issues, but I didn’t have to.

    Lyndon Johnson’s signing of the Civil Rights Act of 1964 did a lot, but civil rights is still a major problem for some of us.

    We can work on finishing what he started.

    We shall overcome.

    -The Integral

  8. Thanks so much for posting this. I receive this kind of crap just about every day and it would be awesome if we could get to a point where it would be considered less excusable than it is now.

  9. Kathryn, it seems like a lot of the emphasis on the virtues of disabled people being independent happens when independence is defined in the way that’s most convenient for people without disabilities. There’s a lot of emphasis on people without disabilities deciding what are important ways to be independent, and choosing ways that spare non-disabled people the effort of helping, and don’t necessarily give the disabled people that much power over their own life. Ironically, that turns ‘independence’ into another form of control.

  10. I’ve been trying to find that article about the Kelsos for months. It got to the point where I thought I’d imagined it. THANK YOU.

  11. I noticed how nascent autistic culture is, too. A good start for us would be to define ourselves anew instead of relying only on our DSM diagnoses. Of course, it *could* become a point of argument against all the different, splintered factions among us.

  12. I’ve found http://derailingfordummies.com to be useful in discussions of privilege with those who don’t really grasp the concept. Especially the “But you’re not like all of those OTHER ones” argument–that one gets brought up a lot with me, as I’m an aspie (“not really autistic”).

  13. As one of those atheist bloggers one hears so much about (although I am myself autistic), I’ve become an advocate not only of rational thought and skepticism but equal rights for -absolutely everyone-. I’ve taken on some dangerous nonsense (autism denial, antivax lunacy, faith healing) on my blog (linked from my name) and linked to Ballastexistenz a couple times to illustrate points I’ve made about self-advocacy.

    Basically, Amanda, I’m a huge fan of your writing and I think that the self-advocacy and disabled rights causes are natural allies of those of us who promote a rational, ethical approach to life.

  14. Amanda, I’ve just discovered your blog and videos. Thank you so much. I love what you have to say, how clearly you say it, and how authentically you advocate for human rights. I find you really inspiring. Thaank you.

  15. Pingback: A Blog Carnival – The Social Restraints and Misunderstandings over an Autistic Community « joshgatz316

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