No Good Guys or Bad Guys Here


I wrote most of this post a few days ago, but was really tired when I wrote it so I wanted to make sure I’d written something decent on the topic before I sent it out. I apologize for getting this out later than intended and therefore possibly prolonging something.

I’ve gotten a lot of responses to my “mental age” post acting like I’m accusing people of being something called bad parents or bad people. It’s interesting. I’ve seen a couple different bloggers recently complain about generalized things, and get castigated for not bringing up specific instances. I brought up specific instances of the usage of certain concepts I believe to be really harmful to people (in the real-life sense, not the hurt-feelings sense) and instead I’m being treated as if I’ve got something against a particular person, even been accused of attacking, bullying, etc.

Here’s my worldview on this sort of thing:

I don’t think there’s good guys and bad guys in the world. I think humanity is an interesting mix of good and bad and everything in between. I think every one of us does things right and every one of us does things wrong, some more than others in either direction, most of us a whole lot of both.

I do suspect there are people who see the world as good guys and bad guys. That worldview would be more likely to make a person panic when someone doesn’t like what they’re doing, thinking, or feeling. “Oh no, that person’s saying I’m a Bad Guy.”

No, that person’s saying you’re human. Being human doesn’t let you off the hook for doing something wrong. But doing something wrong doesn’t negate everything good you’ve ever done. And it’s important not to get your sense of self-worth all tied up in whether you’re doing good things, because that actually makes it harder to do the right thing. Because it makes you want to think you’re doing the right thing even when you’re not, so that you can keep up the belief you’re a good person. And when you want to think you’re doing the right thing even when you’re not, it’s easier to just go into denial when you screw up.

Not that I’m the ultimate arbiter of what’s right and wrong obviously. But I do mention when I see something I don’t think is right. The reason is that I’ve learned a lot when people mention stuff to me. I don’t always agree with them. Sometimes I very much don’t agree with them. Sometimes I disagree with them and later come to agree with them. Sometimes I can see their point right away. Someone on the comment thread seemed to have me pegged as someone who sees the whole world as my enemy, and I can pretty safely dismiss that one as someone who doesn’t know me.

But when someone yelled at me emphatically that I shouldn’t talk about my older brother like he wasn’t my older brother… I listened, and I learned, and I changed. If nobody said that I’d still be saying it. I was taught growing up explicitly that he wasn’t necessarily “older” than me, that he’d stopped maturing at the age of fifteen or so. This wasn’t true. It wasn’t real. But it’s a commonplace belief about certain kinds of people. And the people who taught me that belief learned it from someone else. And I learned it from them. And others doubtless learned it from me until I learned to stop saying things like that. But I didn’t learn it from having everyone “validate” my feelings about being the sibling of someone with a disability. I learned it from hearing the uncomfortable truth about what those views really mean.

I’ve noticed that most of us who talk about certain things like this being wrong, come from a position like mine: We know that everyone is prone to this stuff, we know that framing it in terms of good person/bad person, good parent/bad parent, isn’t useful. We know that we are susceptible to it as much as anyone. We know that it doesn’t make us “bad guys”. We know that even the defensiveness around it is something anyone can get prone to, depending on circumstances, and we know we’re not perfect either and never going to be, but we don’t think being imperfect in this regard means you stop trying or use the general fact of human imperfection as an excuse.

I mean… if I praise what someone has done, does that mean I like everything they’ve ever done? No. I have friends and allies online and offline that I disagree vigorously with on a number of important issues. A lot of the time we even talk about that stuff. And somehow it’s okay. Somehow when we do it it’s somehow known that this isn’t personal hostility going on.

I do, by the way, understand the motivation of wanting to validate the feelings of other parents. I don’t happen to think it’s worth the cost to people with disabilities (and particularly people with developmental disabilities, and more particularly people with — or assumed to have — intellectual disabilities, who bear the absolute worst brunt of these attitudes). The cost in actual impact on our lives of having these views spread around like this as if it’s normal to think these things about us. I also think there are ways to discuss this that say “Yeah this is normal, but it’s because we learned it somewhere, and this is a bad thing to have learned, and here’s why.”

In this case it’s not a matter of not understanding that some people want their feelings validated, it’s a matter of not agreeing that this is a good priority when there are other things that take priority first like the impact on people with developmental disabilities in general. Would I rather validate the feelings of parents who might feel really alone in thinking certain thoughts about their children? Or would I rather make sure that adults I know (and in some cases, am) who struggle to get taken seriously as workers, voters, sexual beings, people who can live on their own if they want, and adults in general, actually get taken seriously in that regard? It’s an easy choice to me.

It’s not that I don’t understand the feelings exist, or that people want their feelings validated. It’s that I think there are more important things in life than validating feelings that arise from harmful prejudice that directly impacts the lives of an entire group of people. And that in fact I find the whole goal of validating feelings that arise from harmful prejudices ethically questionable at best. There are plenty of better ways to discuss them, such as “How did we come to feel this way? What taught us these things? How might these things harm the people they’re directed at? Are these ideas really as innocent as they look?” And again I’m not exempt from that process of questioning.

But it’s hard to even have a discussion of this sort of thing, when at the slightest hint of saying that someone’s doing something I happen to think is wrong, then they’ll go “Oh no you’re calling me a Bad Guy” or something. Compounded by the fact that when it’s an autistic person and the other person involved happens to be a parent, you’ll hear “You’ve never been a parent” (even if you are a parent) and “You’re attacking parents!” or “You’re calling us bad parents!” (even if you’re not).

It’s also hard to have a discussion when there’s various unwritten rules of etiquette that can be invoked no matter what you do. If you post broadly and anonymously, you can be told you’re not producing sources to back up your claims, and that people don’t need to listen to you because of that. If you post specific examples, people can tell you you’re attacking a person, and a specific one at that. If you post publicly, you can be told you should’ve taken it to private email, and it’s again assumed that you only need to say this to one person. If you post privately, you can be told you’re being invasive. If people don’t listen to you, people can blame everything from your writing style to your presumed emotions about or motivations for the whole thing. And the whole thing can always be taken back to being about insults and personal feelings, on a level playing field, even when it’s about issues that affect some people more than others, on a direct and sometimes survival-based level, on a very topsy-turvy playing field indeed.

But bottom line: There’s no good guys or bad guys in my view of the world. It just doesn’t divide up that way. I don’t hold anyone exempt from the idea of doing things right, or doing things wrong, and I don’t see doing things wrong as meaning someone’s something called a “bad person,” or someone doing things right as meaning someone’s something called a “good person”. These are not useful concepts when dealing with me on these issues. There’s also, with regards to prejudices, no such thing as “the sort of person who wouldn’t do that”, and calling someone “the sort of person who would do that” (which is generally seen as some kind of ultimate insult) is another way of calling someone human. Anyone who thinks I’m calling people bad guys or the enemy for this, should probably look to their own views of what bad guys, good guys, and enemies mean.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. 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 in 2014 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.

88 responses »

  1. You may not think that you are not calling people bad or good, but you tried to put words in my mouth.

    You told me that I was making myself into a false victim (which implies I am a liar or a martyr), that I am the “powerful” and that I am acting like I am beaten up by the “less powerful”, that I am prejudiced, that I am dismissive of you. So don’t get off on telling the world how you are so non-judgmental. You are the queen of name calling.

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  3. And that “Are you calling me bad?” nonsense is almost impossible to get around. Occasionally, you do get people for whom ONE reassurance that you’re targeting a bad pattern of behavior. and not specifically them, helps. After that, there’s a diminishing-returns effect, where the more, “No, you’re not bad! You seem very nice, really!” type hand-holding you throw into the conversation, the less likely they are to ever get past that and actually listen. It’s a technique for them to vent instead of listening; they keep spouting, “You don’t know how I feel! You don’t know how hard my life is! How dare you criticize me!” and anyone who’s still trying to engage is drawn into endless offering of comfort and reassurance in the false hope that the person spouting off will eventually want to hear the other side.

    And then there’s the, “I do this, and I don’t think I’m a bad person,” argument. Which is an attempt to create a false dichotomy. Either get drawn into the Reassurance Trap (“You’re nice, you’re good, really! You’re a wonderful person and a wonderful parent! How long do I have to say this before I get a turn to talk?) or say something that will subsequently be interpreted by them as calling them a bad person. Which sidetracks the whole conversation into accusations of name-calling, and who’s being “mean” to the other person.

    It’s a huge, maddening game to prevent any real discourse. And while parent groups aren’t the only ones who do this, parent groups tend to be the most persistent and effective in playing the, “Are you calling me bad?” game.

  4. I completely agree.

    I suspect that in many cases, it stems from a sense of guilt – seeing a parent blamed for their failures, or harmful choices, makes some people defensive because they immediately think of the bad choices they’ve made. My mother does this all the time – she’ll say “oh, I’m sure they were doing their best”, even when she knows little of the situation, and I know it’s basically because she feels guilty over having completely ignored my suicidal depression for years when I was a teenager.

    It’s absurd because criticizing those choices, those actions, is not about holding a grudge or necessarily about needing to issue blame – as you say, it’s about some things being harmful, wrong, and that people need to speak out both to stand up for themselves and to prevent the same harm being done to others.

  5. Thank you, janb, for offering a perfect illustration of what I’m talking about. Answering “You’re dismissing what I’m saying because of your prejudices,” with “You called me prejudiced! And dismissive! Let’s make the rest of the discussion about how people are being mean to me, and how many apologies I’m owed!” is a perfect illustration of the “Are you calling me bad?” game.

    And being called “powerful” isn’t an insult. It’s a perception at least, and probably a reality. Having power is a scary responsibility, and leaves you able to do a lot of harm, but you’re not going to get out of that by pretending you don’t have power over other people’s lives. By ignoring the power you have, and the possibility that you can misuse it, you are increasing the chances that you’ll hurt someone down the line.

    And no, I’m not a parent, so feel free to rip into me with the “You don’t undersaaaaand!” whine.

  6. Here’s my take on people: most are out for themselves and their families. This is how we’re hard wired. As a result, I believe you can generally not trust most people with verifying that they are doing what they say they do.

    On the other hand, I believe there are some people who truly altruistic and ‘good’ people.

    Conversely, there are people who are ‘bad’ and should be avoided. True sociopaths are one example.

    I would say that the percentage of people who are truly ‘good’ and ‘bad’ is relatively small, and the rest of us fall into the ‘neutral’ or the ‘we have our moments’ category.

  7. Problem is I guess, that my life story was too boring, down to earth and mundane for Jessica Kingsley. I think I will go off and write a fantasy novel about how I solved the middle east crisis with my amazing diplomatic skills. Wait a minute, I have been gazumped, the ex Prime Minister is busy doing that at this very moment :(

  8. I was mad, and I might have been blunter and harsher than I should’ve been because of it. But you are right, powerful is not an insult when applied correctly. I’ve seen people take it as one, but it’s just a statement, there are certain power dynamics in every relationship, and they can’t be changed by wishing them away. They do the most harm when ignored though. I know, because I have at times ignored them, and harm has come to other people as a result. This is yet another thing that nobody is exempt from but some people choose to take as insulting. And getting mad at one person hardly makes me the queen of name-calling.

    With regards to wholly good and wholly bad people, I still don’t think they exist. I think sin exists in everyone, call it what you will according to your religion or non-religion, and even the “good” are part of it. And the “bad” can do good things, sometimes even without meaning to.

  9. I think that there is an implication when you use the word ‘powerful’ that implies oppressor. At least that’s was my perception. I don’t feel particularly powerful most times, in fact, I feel downright powerless especially when I am enduring meltdown after meltdown at home with my son Charlie. He’s a wonderful kid, but my, he’s intense sometimes.

    I am sorry that I got angry, but it has been a tough week. Being a parent to all these kids is one thing, doing it alone for a week while my husband is off at a seminar is another. That is probably most of the reason that Charlie has been so intense lately.

    Sorry I called you a name. It was uncalled for.

  10. I am in some support groups for things unrelated to ASD and the sort of issues being discussed here show up in these groups too. As you can imagine, one of the things that we are all call upon to do in support group is to give advice. And advice often includes criticism. Unfortunately, people often don’t take criticism well. For the reasons you discuss, it does not make sense for people to react the way they do. That said, people very often do react that way. It is just the way a lot of people are wired.

    Unfortunately, these reactions often cause the person to reject the advice outright. It can even make people think of justifications for their behavior, which has the effect of entrenching the behavior further. What is more, in the case of an idea, rather than a behavior per se, the person is likely to try and convince other people around them to agree with them, in order to dilute the criticism by generating a larger amount of approval. In the process, they spread the meme that the critic was trying to oppose in the first place.

    What I have found in other support groups is that it helps me to get my point across if I avoid voicing negative judgments and rather, talk specifically about how things have worked for me. By emphasizing that I am talking about myself, I do not engage the other party’s natural defensiveness. Also, people tend to be easily engaged by narratives of experience.

    For example, when you mentioned you experience with your older brother, I was automatically drawn to your point of view. It gave me a model of your first way of thinking and then your change to your present way of thinking. That kind of modeling of other people’s thinking processes makes it much easier for me to access.

    Of course, this does apply to really public statements of principle. If I were called before parliament to testify, I’d probably talk in terms of things being right or wrong. But for me — and your millage may vary — wording arguments in terms of my own personal experience and avoiding direct judgments of the other person’s actions has been an effective tool in situations where I felt that advice would be helpful.


  11. *Sigh*

    janb: Never once did Amanda say she was “so non-judgmental”. How’s that for putting words in one’s mouth?

    In fact, I seem to recall a whole section about how she herself needs to work on getting over prejudices as well. And in fact I’m pretty sure this post wasn’t even about you specifically.

    Here’s the problem: If your intention in the first place is to have no responses to anything you say save “What a good person you are!”, then you will interpret any response that doesn’t say exactly that as meaning the opposite of “What a good person you are!”.

    I’m really disgusted at this. (Feel free, here, any of you who still think it’s all about *you*, to interpret that as me calling you “disgusting”.) The point here was to possibly open up folks’ minds to a bit of enlightenment, and help anybody who’s willing to learn to realize that speaking about a group of people as though they were leading a life of lesser value is harmful to those people because it perpetuates that view, especially if that view is bounced around in forums where the majority is saying, “Yes, yes, you’re a wonderful person; we agree with you!”. Perhaps we as a forum could have discussed some of the origins of, and solutions for, that kind of thinking, and could have come up with some positive ways to dispel that kind of thinking. But instead, because y’all can’t get over yourselves (and feel free, all of you, to interpret that as me calling you “selfish”), you completely ignore THE F*#%ING ISSUE AT HAND.

    Or perhaps I’m just misunderstanding. Yeah, that’s probably it. Because, of course, everybody knows that autistic people have a really hard time picking up on what the hell is going on.

  12. Heres the way I see things..
    The “I wish my son/daughter with a disabilty didn’t have it..
    It seems that once one parent starts this mind set you get all these other parents chirping in..
    And its sad to read and brings sadness..
    The reality is that we only have “reality to deal with as far as the way we view things..
    It kind of goes back to Jim Sinclairs
    “Don’t morn for us” paper..
    I know how I feel when I read ” I wish my child were something other than they are” I feel bad when I read stuff like that.. I feel bad cause the Parent is in some sort of grief stage for a very prolonged time especially when you read the child is older…
    I was trying to think of something Amanda a word or a common idea that encompasses this sort of phenonmenon in parents with kids with disabilitys… I can’t think of a word though or a phrase..
    I can understand why Parents get defensive but that doesn’t help to defuse a phenomenon.. call it a snowball effect in trying to communicate to Parents why this sort of “Prolonged Grief” affects the psyches of those that may have similar or same disabiltys…
    Wishing for something that is not real.. I would think that this is torture to the person who says these things and the ones who hear it being said..

  13. Ahem. I see a few comments were posted during the time I was writing my last post.


    *I*, obviously, was also mad.

    And, funny . . . I still am.

    Oh, no . . . I guess that makes me a “mad person”!!

    And we don’t want to be among MAD people . . .

  14. Evonne:

    If someone says that they are not calling people bad people or good people, then does that not mean that they are not passing judgment — therefore not being judgmental?

    Please correct me if that’s not right.

    I never said that this post was directed at me. I simply responded because I was still smarting from having been inaccurately labeled and then spotted this post and felt that it was incongruous.

    The whole context of your last paragraph is demeaning to everyone. It is very Johnnie Cochran-esque.

  15. It means ‘bad’ and ‘good’ don’t define the whole of the person, it doesn’t mean I’m saying nothing’s bad or good and there’s no difference or that some actions aren’t bad or good.

  16. this may be a tangent:
    since learning about the politics of disability rights, if i can call it that, i think a lot more about power that i have as a teacher. sure, i (may or) may not ever be a parent, but i know what it is to have power over a little part of someone’s present and future, even if it’s ‘only’ grades. and i try not to abuse that, but i am sure i have screwed up some. there is also the power i have in front of the classroom, the direction i take discussions, which viewpoints i might allow and which i might try to silence, and the way i treat people. i try not to abuse power there, but sometimes i know i have failed to respect students’ efforts, or their views, or even devalued their personality. some of this was done unintentionally, using those famous aspie social skills. but it made things harder for them in the very little part of their life that was my class. and it’s still wrong, even though i did it by mistake or unthinkingly.

  17. Evonne, I used to have this Alice in Wonderland quote taped to my door:

    “But I don’t want to go among mad people,” Alice remarked.

    “Oh, you can’t help that,” said the Cat: “we’re all mad here. I’m mad. You’re mad.”

    “How do you know I’m mad?” said Alice.

    “You must be,” said the Cat, “or you wouldn’t have come here.”

    Different meaning of mad, but oh well.

  18. Well, I believe that’s true, bad and good do not define a whole person. But I don’t think that’s what people have been objecting to.

  19. Omigosh, I just got called Johnnie Cochran!

    Yeah, Amanda, same meaning of mad. ; )

    janb: I really don’t know how to respond to this —

    Evonne: If someone says that they are not calling people bad people or good people, then does that not mean that they are not passing judgment — therefore not being judgmental?

    — except to say that it’s exhausting, and that “doing” is not the same as “being”. And that “saying” is not the same as being.

    And again, that I was too busy being mad, and doing mad, and saying mad, to notice there was a conversation carrying on without me.

    And, um, how dare you call me Johnnie Cochran. :P

    And, feel free to respond one last time (I’d say ‘let’s just move on’ right now but that’d be unfair if I’m the one getting the last word) . . . and then I promise I will.

  20. The powerful=oppressor idea is common, but false. It’s like how ‘privileged’ gets tossed around as a word for ‘bad person’ and people have a hard time naming and addressing real privileged. People have power. Some people have more power than others. And some people (I’d include all parents in this) have power over other people.

    Usually, it’s the people one step up from the bottom of the power ladder who have a hard time seeing this, because the only people who have less power than them are the ones they’re ‘helping’ or ‘serving’ or ‘taking care of’. But even if the caretaker doesn’t have all the power they’d like, they have a lot of power in a lot of different ways, because you can’t manage food, shelter, and basic physical assistance without having power over someone.

  21. janb

    I don’t think that being “powerful” (or “having power” or “having most of the power over a certain person in most contexts and situations” or whatever) necessarily equates to being an “oppressor.” At most, it implies the POTENTIAL to oppress–even if ENTIRELY WITHOUT INTENT.

    But a person can hold power and choose not to use it for oppressing others. To do so, they must first BE CONSCIOUS OF HAVING THAT POWER even if they never asked for the power or never wanted it and don’t want it now and wish they could get rid of it.

    Sometimes we just don’t get a choice in whether we hold certain kinds of power over other people. (You may not have the power to stop Charlie from melting down so much, for example. But you do have other kinds of power, such as the power to make sure he has access to food–or not. Access to water–or not. Access to certain types of educational services that might be available if you push for them hard enough–or not. The right to make certain decisions for himself–or not. Of course, in most cases, you either don’t use that power or you try to use it wisely — denying the right to eat unhealthy foods but allowing healthy foods, for example. But whether you use the power wisely, stupidly, or not at all, it’s THERE.) What matters is not, “Are we powerful?” Because I don’t think there is ANY value judgment in having or not having power.

    What matters far more than HOLDING power is, “Are we capable of recognizing the power we have? And are we using it as wisely and carefully as possible so that we don’t accidentally hurt others with it?”

    All this is how I tend to interpret statements like “you’re powerful.” And I’m fairly sure this is, if not exactly what Amanda means by it, then pretty close. If not, I hope she’ll chip in.

    If an analogy helps: Suppose you woke up tomorrow morning and found that your arm muscle strength had suddenly increased 10-fold. You didn’t ask for it to. You didn’t want it to. You hate the idea of being that strong. You think it’s horrible and disgusting and evil. But there it is: you’re suddenly 10 times stronger.

    But you don’t know it at first. So you go around opening doors and shaking hands and patting people on the back using what feels to YOU like the same amount of strength (effort) as always. What you don’t know is that you’re breaking some of these doors, bruising people’s backs, and breaking their finger bones. That’s not your intent at all. You’re a very nice person who respects property (and therefore would never tear apart a door on purpose) and never wishes to harm a fly (much less injure people). But through your own innocent ignorance, people are still getting hurt.

    Then one day, a few weeks after your sudden burst of strength, someone timidly points out to you, “Hmm, you’re strong.” But being strong in and of itself doesn’t mean, “I’m a mean oppressive person who enjoys hurting people.” Observing the fact of strength (or being powerful) does not need to imply a value judgment. It DOES mean that you would need to start being more attentive to how you use your strength. It means you would need to open doors, pat backs, and shake hands with a much, much lighter touch than before. And it means checking in with people once in a while, “Did that hurt, or do I still need to tamp down my power a little more?”

    Being strong doesn’t automatically have to mean that you break people’s fingers. You can avoid that fate IF you are conscious of your strength. If you ignore your strength and pretend that nothing has changed, then you could be the nicest person in the world and STILL hurt a lot of people along the way.

    Does this help?

  22. Instead of good or bad people, is it better to speak of “people with goodness” and “people with badness”?

  23. I’d just like to say that when everyone was arguing about the “leadership” of the movement and whose views should carry more weight, I didn’t really understand the problem. I wasn’t seeing it. Now, I do. The fact is that we have to deal with this stuff 99% of the time, being told that autistic opinions don’t count for as much as other opinions. As a minority, perhaps we do need one small place in the world where the opposite might be considered fair. This doesn’t take away anyone’s right to expression, but if you really want to be seen as an ally to autistic people, it might be wise to concede to autistics the last word on a subject where lines have already been clearly drawn.

  24. This is the same kind of thing I see happening within the Anglican church with regards to same-sex marriage. Last month, I was involved in a debate on a BBS about how my thoughts as to the best way to deal with the situation just don’t go far enough for the liberals and are too far for the conservatives. A few days ago, I was at the centre of another debate (same BBS, some of the same people) where I was being told that I was too liberal by the conservatives and too conservative by the liberals. I call myself a moderate, and I happen to be a bit more objective than most of those who like to call me names. By which I mean I am capable of seeing more than one point of view and understanding those views without feeling threatened.

    That doesn’t make me “better” or “worse” than anyone else, and it doesn’t actually make me either a liberal or a conservative. It’s just how I see things.

    I note this all because I think it’s very similar to what Amanda is talking about in this post. The liberals like to call me a conservative because I threaten them, and vice versa. Basically, liberals are the “good guys” and conservatives are the “bad guys”, according to the liberals. Switch that for the conservatives. My view is that neither side is “good” or “bad”, merely “human”.

    Which is, I think, what you’re saying.

  25. I think that conceding because someone is autistic is demeaning to them. And frankly, I have read what they write, they don’t need concession. They acquit themselves well. Frankly, I am out gunned here. It’s hard to make a point when people say, “Awww, don’t pick on the autistic person.” That’s the Johnnie Cochran card.

    Cochran represented O.J. Simpson in the mid nineties and he was famous for pulling the race card all the time. He would stop actions against himself or his client by virtue of race alone.

  26. I think something that gets left out a lot is that even within one relationship between two people, it’s not always as simple as one is powerful and the other is powerless. One person might have more power in some ways, but not in others. Or in some situations, or over some things.

  27. I’ll read the rest of the comments in a minute (so will probably be completely off topic now :D) but to my way of thinking there is nothing wrong with voicing how you feel provided you don’t place the blame on a group of people, or an individual who has done nothing wrong to you. I am a regualr on another parenting site that has nothing to do with the autistic spectrum beyond the fact there’s a few parents who have children on the spectrum and a couple of us parents who are also on the spectrum. And yes, I will go on that site to say “Aaarggh, T fingerpainted with the soup rather than eat it today because he seemed to think it was paint.” But I post from the level of him being an almost four year old and then I get loads of replies from parents of almost four year olds, or who were once almost four explaining that yes, their child has also finger painted with soup. And I go from feeling “aarrgghh” about it to seeing the funny side. And I’ll talk about the clever things he does, how proud I am of him and I’ll talk and praise (and grumble and moan sometimes) about my 21 month old lad who is not on the spectrum. But at no point will I say that my children are a burden, that they are imposing on me, that T’s being autistic is a terrible calamity. And neither do any of the parents with children on the spectrum on the site. To them their children are children, regardless of what diagnostic label they do or don’t have, with the ability to cause us to metaphorically tear our hair out sometimes and the ability to make us so proud and happy about them at other times.
    Possibly because of my being Aspergers I find it nigh on impossible to have friends in real life. II can get to the stage of “friendly work associate” and that’s it. But when I was about 28 I found out that one of the women on the parenting site lives in the same town as me and now we’re very good friends. However, 99 % of our correspondence is via email and that suits both of us fine.
    I know full well that my psots about T ripping up his books, or J bashing me on the haead with his beaker will be on the internet for my children to read when older, but in none of them is me saying how disappointed I am in them, or how much of a burden they are.

  28. See, it’s not about “don’t pick on the autistic person”. That’s just how it gets read, a lot, and I’m not certain how to explain the difference.

    There is a real difference, though. For instance, once my writing started a real controversy on a mailing list a long time ago, and someone said, “She’s been through so much, don’t add disagreement to it.” And that was BS and I told them so, and would do so again.

    But this isn’t about that kind of thing.

  29. Um, gently speaking here, using the late Johnny Cochran’s name in a derogatory manner is considered a racist tactic where I live (Los Angeles). Mr Cochran was very well-regarded locally by his peers and colleagues. He was also a long-time advocate for law enforcement abuse victims. If he were still alive, I’d bet he’d be helpful (if called upon) to the autie community in this regard.

  30. I think I understand what you mean GTTO. If I disagree with you over something I would say so, politely, but I’d say. And of course you might disagree with what I say. Or point out I’ve made a huge, glaring error or assumption. But I don’t want my sons, either of them, to read back and I’ve put down they were a burden to me. Because they’re not. So with myself it’s a question of I will not pick on my two little lads :).

  31. No, janb, what is demeaning is to have a legitimate statement construed as a plea for pity. Note your own first comment here on having words “put in your mouth”. Then you turn around and do what you accuse someone else of?

    Note the conditional clause beginning “but if” in my earlier comment. That wasn’t directed at you, anymore than Amanda’s post was. Whichever side of “if” you fall on is no concern of mine. My point is simply that if one is a true ally, one might be able occasionally to say, “yes, I see how that was offensive to you (the minority)” without having to add on “but look how you have offended me too (the majority)”. Speaking for myself only, I would see this as a reasonable way to recognize a power differential, whether or not one was responsible for creating or perpetuating that.

    Not a concession in the sense of “you are right, I am wrong”, or anything like that. Conceding the last word (in a forum or community which is Not About You)is quite different from conceding the truth or falseness of a point. It’s just a simple matter of respect.

  32. janb said:

    It’s hard to make a point when people say, “Awww, don’t pick on the autistic person.”

    I haven’t seen anybody in this discussion say “Don’t pick on the autistic person.”

    If you’re referring to Evonne’s statement that you called “Johnnie Cochran-esque,” I didn’t read it as playing the autism card at all. When she said this:

    “Or perhaps I’m just misunderstanding. Yeah, that’s probably it. Because, of course, everybody knows that autistic people have a really hard time picking up on what the hell is going on.”

    I read it as sarcasm. When some non-autistic people disagree with autistics, they argue that “Because you’re autistic, you are misunderstanding everything and therefore don’t know what you’re talking about.”

    This kind of tactic gets used against all kinds of people to shut them up. For instance, when everybody was discussing women’s rights in Victorian England, some men argued that women’s brains were too weak for political discourse anyway.

    I don’t think Evonne was saying, “Don’t pick on me, I’m autistic.” She certainly wasn’t “playing the autism card.” If anything, she was speaking against *non*-autistic people playing the autism card when they disagree with autistic people. (“You’re autistic–therefore you are constantly misreading social cues and don’t know what’s going on. Ergo, your opinion is irrelevant”). Evonne was arguing against this tactic, not for it.

  33. Bev – here’s your quote: “This doesn’t take away anyone’s right to expression, but if you really want to be seen as an ally to autistic people, it might be wise to concede to autistics the last word on a subject where lines have already been clearly drawn.”


    Pronunciation: k&n-‘sEd
    Function: verb
    Inflected Form(s): con·ced·ed; con·ced·ing
    Etymology: French or Latin; French concéder, from Latin concedere, from com- + cedere to yield
    transitive verb
    1 : to grant as a right or privilege
    2 a : to accept as true, valid, or accurate b : to acknowledge grudgingly or hesitantly

    Now, how did you mean it?

  34. I’ve been thinking about this and the stuff going on in the hub: the whole mess over mental age, the mess over who’s goals are important for the autistic community, the mess over whether or not laughing at misuse of language is offensive, etc, and I think…

    I need to get away from this. I’d rather deal with people who know nothing about autism than the people I’ve been dealing with online – in fact, I’ve found dealing with people who don’t have a lot vested in thinking that they are doing “great things” for disabled people means that I’m dealing with people more willing to make change. People with a vested interest have too much to lose if someone calls them on something (this goes for disability advocates too, including ones with disability).

    It’s the reason I refuse to serve in a leadership capacity in autism-related organizations, even ones I very much support and like (and I am asked to do so occasionally) – I know I have too much vested in this to do it right, my ego would get in the way, etc. I couldn’t do what is best for an organization rather than what is best for Joel, at least not in that position.

    Right now, I read random posts on the hub and see a mix of both some really amazing writing and some stuff with tons of “little” prejudices in it. I’m not allowed to tell someone they are prejudiced or they shouldn’t say things when they say things that are prejudiced – that’s “thought police” and such. In other words, the community has become too vested in their own things (myself probably included).

    Just recently, I had an argument offline with a parent about the fact that I responded to this parent in a public place (I was responding to a public statement), rather than via a private means and that it would have been “better” if I did it in private – I guess it would have been less embarassing for him, but I’m sorry that I can’t make exceptions for everyone’s ego.

    I probably need to be choosy about what I read for a while and focus my advocacy on people who are willing to change – unfortunately some of the parent community isn’t that group, yet our evil legislature is willing to at least listen. Pretty strange when politicians seem preferable.

    Now of course I know there are parents doing great things, who respect their kids. But you see, having to write this is evidence of the power problem and the concerns I’m having over the blogasphere right now – if I don’t write an explicit disclaimer on everything I write that I know there are decent people in a certain group, I get skewered.

    So, I’m sorry for the people who aren’t doing the things I’m writing about that had to read this rant.

    But for the rest, I really wish we at least saw the world the same way – there is a huge lack of a disability rights framework in the whole autism conversation.

  35. Janb:

    Regarding Bev’s comment: ““This doesn’t take away anyone’s right to expression, but if you really want to be seen as an ally to autistic people, it might be wise to concede to autistics the last word on a subject where lines have already been clearly drawn.”

    The way I interpreted this was only as a request to allow the autistic person the right to say the LAST WORD. To me, this does not need to equate conceding that they’re right and we’re wrong. It does not mean having to give up your opinions or feelings (or your right to have them). It merely means, being the first to stop talking and allow the other person to be the last person to make their point in a prolonged argument, especially when you’ve already made your point. Or at least that was how I understood what Bev said.

  36. When I saw the title of this post I was reminded of a statement by Ben Stiller’s character in the movie Zero Effect: “There aren’t evil guys and innocent guys. It’s just… It’s just… It’s just a bunch of guys.”

    And regarding the “conceding to autistics” thing: I interpreted that as basically meaning that if the issue is one of how a given thing affects autistic people, then autistic people should be the ones who get the final say on how they are affected by that thing. And I am not talking about “affected” here in the sense of having “hurt feelings” or something along those lines, but rather, “affected” in the sense of “there could be serious, possibly physical consequences as a result of this”.

    What has been astonishing to me in the major discussions I’ve been reading recently is how frequently people seem to blur the line between being/feeling insulted, and being in actual danger. And yes, it is possible to put people in greater danger through words and attitudes alone, and no, this is not “danger of having hurt feelings”. Rather, it is the danger of not being acknowledged as a full person, and the danger of being denied certain (important) rights based on the assumptions people make about you.

    When people aren’t acknowledged as full persons, really bad things can happen. Like people being neglected, or killed, or denied communication systems, or assumed unable to learn based on something like a language delay. These consequences are all way more serious than simply feeling bad, or feeling like people are calling you bad. This is not to say that feeling insulted feels nice, or that people who feel insulted have no right to feel as they do. But it is to say that it is very important to avoid equating the severity of feeling insulted with the reality of the dangers people face when attitudes persist marking them as nonpersons or “less-than”. Those attitudes belong nowhere in any civilized society.

  37. Good Godalmighty! As one who doesn’t know if he’s on the autistic end of “normal”, or the normal end of “autistic”, and is just trying to learn, I really don’t want to get involved in the politics of autism.

    I like to read Miss B’s writings because, well, what she writes seems to make sense to me, and has taught me things I didn’t know before I read them.

    And I like yer style, Miss B.

  38. Ballastexistenz, I read your blog frequently, and I like this post more than any other because of its usefulness. It has given me some clear direction in terms of figuring out a few situations in my life. Sorry I can’t be more specific, but thanks for writing this post.

  39. In response to the comment on wanting to avoid politics, I can say that is a feeling held by darn near everyone.

    Unfortunately these autism politics have real affects and simply not getting into arguments would not solve the issue or make life any better than it currently is (often bad) for autistic people.

  40. Btw, janb, my initial response to your initial comment here came during the aftermath of this:

    And I was pissed. Your “so non-judgmental” remark is what tipped me over the edge. Sorry.

    And as far as “concede the last word to autistic people” goes, I don’t take that as “let ’em win the argument”, but rather, I dunno, “autistic people know more about being autistic than you.”

    But again, I apologize for the “don’t know what the hell is going on” comment. It was more a response to that previous post, and I was fed up. The “bad guy (gal)” in that instance had said something almost the equivalent of “it doesn’t matter that we’re talking pitifully about my autistic son; he doesn’t have the capacity to understand anyway.”

    Again, I’m sorry for *that* comment. The others I’m sticking to.

    And please, especially since you’ve read the “‘I am nice’ signals” post, do try to understand that I just can’t bring myself to insert into my writing (or my speaking, for that matter) little sugar-coated missives that indicate I come in peace. I’m not saying I don’t have the *ability* to do it; I just can’t make myself do it without, y’know, getting the sense that I’m being painfully fake. Gentle is just not me — not when it comes to language.

  41. Beg pardon —

    *acting* painfully fake. ; )

    And seriously, I’ve tried to insert that kind of stuff, those gentle phrases and the like; I really have. And they never fit; it’s like my writing/speaking is an elephant and the canned ‘nice’ phrase is, like, a giraffe’s leg, and the giraffe’s leg is taped to the elephant’s eyebrow or something. It doesn’t work. And in person? fugeddaboutit. I once focused so hard on trying to behave *nicely* that my arm forgot to be still and I literally threw a glass of Coke at somebody. Unintentionally, I swear!! I’ve resolved that it’s better to come off like a mean weirdo than a corny, nonsensical, insincere, dangerous weirdo.

    Emoticons are as close as I get. : )

    Shutting up . . . . . *now*.

  42. I’ve said it before and I’ll say it again (and probably get flamed for it): why shouldn’t a parent lament that their kid will face prejudice and abuse throughout life?? Why the hell must everybody jump up and down, decrying how a given parent is sad about who their child IS, when perhaps it isn’t the “disability” that the parent is sad about? Is anybody saying that a parent, some (dangerously) generalized average parent, should be thrilled to hear that their kid will face being ostracized and harrassed lifelong? Having their confidence and individuality and capability trampled on? Get a grip, people: you can love your autistic child, love the way that they intrinsically are, and still have days where you wish to hell that the situation that they faced were different and feel overwhelmed by what they need. You can still have days when you just wish that they could tell you that they have a stomach ache, or that they need something – if you think that either side of this is a picnic, guess again. I think sometimes that gets expressed wrong – as wishing that the “autism” weren’t so, but you can well imagine (I should think) what it is like to fight that battle not just on behalf of yourself, but for somebody else for whom you would gladly burn alive.

    Parents naturally want their children to be happy and loved by others the way that their parents love them. This makes that really hard. Grieving may ensue. Is this really about how one parent on some blog is treating their child, or is it about something she had no control over that happened to you? And then to start generalizing over to everybody and how the parents are hijacking “the movement” – Jeez. Keep the movement. Do me a favor and see if you can’t improve the world for my kid (need all the help I can get), but I’m not exactly interested in being the face of autism, thank you very much.

    I’d be grateful if every word weren’t so loaded with oppression and ominous symbolism. Somebody’s mother was right: mostly we’re all just trying to do the best we can. Take a deep breath and work from that assumption, we might all get somewhere together. OR we can just spend all our time tearing at each other.

  43. It’s not about any of the things you have claimed and/or suggested it might be about. If you read the words, you can find out what it is about. If you can avoid projecting other meanings onto it:

    It’s about the fact that certain ideas expressed are ones that, in a broader context, cause large amounts of harm to many disabled people. Specifically, the ideas about mental age.

    If you think this is about bad people and good people or some mysterious trauma in my past or parents mourning that someone will face discrimination, please read the posts again and the elaborate and detailed explanations of why these are not what people are objecting to or trying to say. I can’t bring myself to write it all over again.

  44. Sometimes there is just the need to “walk away” from an argument, whether you have successfully had the last word or not, whether you have been convincing or whether you have failed utterly to convey the intent you had in the first place.

    When it gets all too emotional, and people start protesting about how they are offended, just walk away, the argument is lost, they were not listening with there minds at all.

    Some time when everything has settled, go back and see if they are not repeating in some little way part of your argument years hence, you never know, you may have planted a little seed that grows well on disturbed ground.

    Advocacy is not about making friends or keeping them, if we were forever afraid of offending people we would never disagree with them or tell them about the crap they might have just stepped in.

    So folks if I have offended, go on – whine away while I go off to fight another day.

  45. It seems you can be explicit about how you meant a word or phrase, but still not be “allowed” to define it on your own terms.

    “My point is simply that if one is a true ally, one might be able occasionally to say, “yes, I see how that was offensive to you (the minority)” without having to add on “but look how you have offended me too (the majority)”. Speaking for myself only, I would see this as a reasonable way to recognize a power differential, whether or not one was responsible for creating or perpetuating that”.

    I thought that was pretty clear. Still, I’m asked to choose from 2 arbitrarily chosen dictionary definitions as if these were the only possible meanings.

    Being able to define one’s own terms (within reason, within the full possibilities of the word used) is a function of having power.

    To have one’s definition ignored, to be condescended to in that way, is the very thing I have been trying to talk about here. The consequences of this (not being taken seriously as a person) have been discussed thoroughly by Amanda and others. And yes, there are communication differences between autistics and non-autistics. It’s a major part of the diagnosis, as we are all aware. It’s not playing any sort of card other than the cards I’ve been dealt.

  46. Bev, I get it now. When you say take their word for it, they’re autistic, I get that. I mean, who else knows what people with autism are going through other than those going through it.

    I see people all the time who say that they have autism or aspergers, this as adults who are “self-retro-diagnosing” (if that’s a word) and I think, yeah, right. You do NOT have what I would consider to be autism. I am not that familiar with aspergers, so I try not to go there.

    Part of the problem with helping my son is that I don’t “get” what’s going on with him.

    Why is he so completely terrified of thunder storms?

    Why does he scream all the time?

    Why does he get his pronouns so completely mixed up?

    Will he ever really have a two way conversation with me?

    It is just fundamental differences in “language” for lack of a better word.

    One thing I am glad of is that I came into this conversation with a different level of understanding then I have now. I really think that I “get” a little more about what you guys are trying to say.

    I still have a hard time, because NT is all I know, but I am trying.

    Thanks for explaining.

  47. Thanks, Bev. ‘Cause I was also gonna say, see, janb, you pissed Bev off in much the same way you pissed me off, until she just said “f*%k it”.

    I would like to say, finally, though, that it’s a shame that so many people enter this forum or other important forums, get their feelings hurt, and then don’t come back ’cause they’ve decided “Wow, those people are mean, and they’re set in their ways, and they attack me every time I say something awkward, and I just can’t win in that community, so I’ll go find another community where I can get my feelings validated.” And that’s harmful, because then the original point, which may have been a very valid and *crucial* point, is ignored or — worse — negated out of spite. In fact, those folks that leave might even gossip in whatever new and validating forum they find about what jerks the people in the other forum were. The Abrasive Amanda Baggs and Her Militant Legion of Fiends!

    With that in mind, I *do* feel the need to apologize for hurt feelings, because I’d feel guilty as hell for chasing somebody off and giving them a negative impression of the whole community, when if I’d just been a little sweeter that person might have learned something. And so, really, I sincerely THANK the people who stick around even though they feel like they’re taking a beating.

    Shutting up . . . . . . *now*.

  48. “And yes, there are communication differences between autistics and non-autistics. It’s a major part of the diagnosis, as we are all aware. It’s not playing any sort of card other than the cards I’ve been dealt.”

    I completely agree. My son’s communication differences in terms of his verbal language are more outwardly obvious than mine, but I do have differences in communication and perspectives that are different from people who aren’t on the autistic spectrum. My husband was telling me yesterday that I often don’t seem to see the main focus of a conversation and I had to explain to him that it’s not that I don’t see the focus, just that I have got a different idea than him of what that focus IS.

  49. Self-righteous people who place their whole self-worth as a person on being thought good, project what they reject in themselves on other people and groups of people who are of a different nationality, ethnic group, religion or of no religion, political belief, social class, gender, sexuality, intellectual or physical ability, neurotype etc. This attitude is the cause of war, genocide, torture, state oppression, terrorism, racism, sexism, disablism, homophobia etc. While those people who don’t think themselves self-righteous feel morally superior to those whom they think are.

    No one is entirely good or entirely bad. But there are people who try to live a life based on love (in the real meaning of that term, not sentimental or romantic love) however imperfectly; that is how one should strive to live – not in a self-righteous and fearful pursuit of an ideal of being good in order to validate one’s self-worth. There are also people whose primary motivation is not love. Anyone can name historical and contemporary figures who are generally regarded as good, and those who are gewnerally regarded as evil.

  50. I had one of those moments today when I saw into my son’s thoughts a little and it struck me so profoundly that I had to write about it some on my blog. He is quite a kid.

    I am glad that I have been hanging around too and reading what everyone has written.

    I felt like a fish out of water back when I worked for Voices For Independence on their board when we lived in Erie, PA. It was an unpaid position, I had a day job at the time, but it was one of the best “jobs” that I have ever had. My husband’s best friend was the one who started the CIL up and she is a quadriplegic from a birth accident. Up to that point, I didn’t know anyone who had a disability. Even after VFI, I didn’t know anything about autism, because CILS are mainly geared toward personal care help, at least that’s how this one started out.

    Anyway, this was (is) a renegade center for independent living. That means that it was run by and for people with disabilities in a town where the alternative was doctors and nurses and professionals handing out what they thought the poor disabled folks needed.

    I had to learn a lot about different disabilities and how to relate to everybody. I was their PR director and did a lot of their computer stuff, web design, graphics, I did a newsletter and fund raising. That’s what I was doing at work, and that’s what I have always been best at. I found that although I thought I knew how to write a newsletter, I had to learn what to say and what not to say, especially in the newsletter.

    There were times when I had to take criticism for my own ignorance and it was hard to do. One thing that I remember was that after my first run with the newsletter, the president of VFI pointed out to me that saying ‘disabled people’ was not correct or desirable. It was ‘people with a disability’ that was better. Always put the people first. I was surprised that something that subtle could be that importnat. But it was.

    It think that it is hard for anyone to take criticism, especially when the people who are pointing out a flaw are right about it.

  51. Janb,

    I’m glad you stuck around…and that more is making sense…It reminded me of a book I read once with new concepts to me…I could hold those concepts in my head for only a few minutes…
    and it took a lot of readings for me to keep them from immediately falling out again…

    You said “I see people all the time who say that they have autism or aspergers, this as adults who are “self-retro-diagnosing” (if that’s a word) and I think, yeah, right. You do NOT have what I would consider to be autism. I am not that familiar with aspergers, so I try not to go there.”

    I have three children…one with Aspergers which
    is Autism too and one labeled Autistic. The two
    have similarities and differences…but for sure
    there is variance…I think one should be cautious
    about defining autism only by one’s own child. My
    two children are both Autistic and so is yours although they all have differing skills I am sure.
    There are a lot of Autistics margenalized because
    they got their diagnoses so late in life…

    “Part of the problem with helping my son is that I don’t “get” what’s going on with him.

    Why is he so completely terrified of thunder storms?”

    Many Autistics have super sensetive hearing…
    We finally got one of our children musician’s ear
    plugs made by an audiologist and these were very important when going to noisy resturants which
    were unbearable before…A lot can be learned by
    talking to other Autistics and learning fro themwhat has worked for them…

    “Why does he scream all the time?”
    There could be a lot of reasons…but look first
    to making his environment work for him…If his
    skin is sensetive he may only be able to wear soft cottons and silk…If the household is nosiy and
    overloading it may be too much for his processing and hearing..Try having a quiet room where he can take refuge…Experiement with a lot of things..

    “Why does he get his pronouns so completely mixed up?”
    They aren’t very concrete terms in the first place
    so that could be part of the problem…Sometimes a good audiologists can help with some of the language blocks..

    Will he ever really have a two way conversation with me?
    It sounds like he already is…in asking for the tape the other day…I read your last blog!

    “It is just fundamental differences in “language” for lack of a better word.

    One thing I am glad of is that I came into this conversation with a different level of understanding then I have now. I really think that I “get” a little more about what you guys are trying to say.”

    I was so glad to hear you say this! I have learned so much on this blog as well… I have
    only posted a few times…and have often come here with one way of thinking and left in a totally
    new place….I am thankful for those who blog here and for this blog and other blogs on the web…

    I still have a hard time, because NT is all I know, but I am trying.

  52. “it’s not that I don’t see the focus, just that I have got a different idea than him of what that focus IS.”

    Definitely! Or, in my case, the focus just keeps shifting… ;)

  53. I think Amanda hit the nail on the head when she talked about a “therapy culture.” In the classic Rogerian model of therapy, the therapist offers unconditional acceptance of the patient, who is allowed to fully explore all thoughts and feelings, free from judgment or criticism. So many bloggers treat their blogs like a therapist’s couch, a safe place for self-reflection. (Not too hard to understand, considering “blog” derived from the term “web-log,” or an online diary.) At the very least, some bloggers think of their forum like their living room, with only close “friends” (read: those who share the same opinions) invited. There might not be anything wrong with this model of a blog, except that it is not based in reality. The blogosphere is NOT your therapist or friend, and people WILL disagree with you, sometimes vehemently. If you adhere to the blog-as-therapy model, you will get your feelings hurt, and you will engage in all sorts of defensive tactics, some of which can be seen in these comments.

    I (and many others, I’m sure) don’t subscribe to the therapy culture when it comes to blogs (maybe because I don’t blog myself?), so I admit that much of the uproar is lost on me. If you do not expect unconditional acceptance, you are not surprised or hurt by disagreement and you don’t lash out defensively nor retreat to lick your wounds.

    I was going to stay out of this mess, but I thought it was worth saying that there are readers out here in the blogosphere who actually DO learn something from these posts, who DO suspend our natural defensiveness for a minute to fully consider a different perspective or opinion, who DO emerge from the experience much wiser. Your advocacy efforts are felt by people other than the regular commenters, by people outside the confines of the Hub. Please keep it up.

  54. Evonne,
    What a great link! This is why so many people IRL tend to roll their eyes when I tell them I blog.


    Thank you. I am glad this is starting to make better sense. And for the record, I never thought you were a “bad” person, either. I think it takes varying amounts of exposure to new ideas before the old ones can start to be replaced or altered. Some of the exposure can be quite unpleasant for all parties involved. I now see a person who is making the effort and that is something I respect and appreciate. Peace…

  55. “good” is an interesting concept. In my experience, good refers to an act which is acceptable to your audience. Its very subjective and impossible to please everyone, especially the army of critics who are there to inspect your actions with absolutely no experience of the situation themselves.

  56. Is anybody saying that a parent, some (dangerously) generalized average parent, should be thrilled to hear that their kid will face being ostracized and harrassed lifelong? Having their confidence and individuality and capability trampled on? Get a grip, people: you can love your autistic child, love the way that they intrinsically are, and still have days where you wish to hell that the situation that they faced were different and feel overwhelmed by what they need.

    The problem with this, and why it matters that it isn’t expressed right, is focusing on your child as the problem, not all the people and institutions who mistreat them. There’s nothing wrong with being bothered that your child will face discrimination and mistreatment. You SHOULD be bothered. But wishing autism away to solve that is like trying to solve racism by wishing everyone white. The mere fact of expressing the wish on those terms will actually reinforce the bigoted ideas that everyone should be, and should want to be like the dominant group, and encourage people to look at the difference as the flaw, not the discrimination.

    Bigoted actions don’t come out of nowhere. There’s a whole network of connections between attitudes, assumptions, expression of ideas, feelings (yes, even your precious feelings) and acts. By expressing an attitude, you’re spreading an attitude that makes the people performing the bigoted actions feel more confident and justified.

    Which is why people point out the problems of mental age, and the problems of lamenting your child’s difference, instead of the people who won’t accept them. It’s not all about “something she has no control over that happened to you”. People bring up examples of what happened to them to show what these expressed attitudes support and reinforce, not out of some irrational emotional reaction to something in their past. It really is about the harm done by spreading certain messages, and the people pointing this out really do just want others to rethink these messages and stop spreading them, not to suffer, or put on some sackcloth-and-ashes show of penance, or provide a target for ‘venting’ anger. Just to change.

  57. “The mere fact of expressing the wish on those terms will actually reinforce the bigoted ideas that everyone should be, and should want to be like the dominant group, and encourage people to look at the difference as the flaw, not the discrimination.”

    That was perfectly explained.

  58. When I first found Amanda’s website, I felt so much like she is saying things I thought but couldn’t even find the words to write. I always thought I was alone in having weaknesses and strengths that weren’t typical. But Amanda has stronger strengths than I do yet I can do some basic skills she can’t [if I understand right which I may be sterotyping or misunderstanding, and this isn’t meant to be judgemental. What I was referring to was that I have a LITTLE less difficulty with some tasks,
    [trying to be funny]
    It only takes me 20 steps to make a phone call, and I can usually boil water if I can get started. And I work full time, although the stress of acting NT is unbelievable. And I don’t think I even come across as NT, I think I comee across as a combination of shy and having severe medical problem which kind of hides my autistic traits.

    But, now I keep having people tell me about all these websites saying Amanda doesn’t exist, Amanda is an actress, Amanda doesn’t have autism, etc. It is very discouraging and confusing. Not ONLY the fact that it is an attack on someone who I feel I care about after reading so much of her life [on this blog]. But also it seems to invalidate anyone who doesn’t fit stereotypes, and that makes me confused about myself too. It is just so confusing to me why people are like this, making hurtful accusations simply because someone doesn’t fit their stereotype. If Amanda said she was hearing impaired, I don’t think anyone would bother with all this. So why should it be any different with autism? No two people share the exact ranges of hearing loss. So why should everyone with autism have to fit some pre defined mold? I myself don’t even understand everythinng about Amanda (of course, since I’ve never even met her.) but she has wisdom. More than I do. And she is a survivor. And hearing her story gives me hope, that I’m not just the only person in the world who makes no sense to others around them and is devalued. So what is WITH all this internet attacking?

    Amanda once commented that she can read Joel Smith’s body language well [I think. I am so used to people saying what I say is wrong that I always quaifying it saying if I remember right.] I understand both of their writing in a way that I don’t understand other people’s.

  59. Gossip happens. Particularly to any particularly prominent autistic person. Which is why I’ve just blanketly decided not to host “Is this person or isn’t this person autistic?” discussions (about anyone) on my website, even if I’ve allowed them in the past. See my about page for detailed reasons why. (And on this thread alone, there is someone who has known me for many years, someone who has known me from birth, and a friend-of-a-friend of my brother.)

  60. Yes, Amanda and myself can somewhat read each other’s body language. It’s a frightening experience, I don’t know how you NTs go around being that naked to each other. :)

  61. That’s cool. The gossip thing just reminds me so much of how in real life people just CAN’T seem to understand how I can do one thing fine, yet not do something they consider easier.

    By the way, I really like your new setup for the reason I like it shows the last few comments on your blog.

  62. It is frightening.

    Especially frightening when I realized it was mutual.

    It’s so multilayered. It’s like, there’s what the person is feeling like/reacting to, then what they’re feeling about that, and what they’re trying to cover it over with, and possibly why, all right there on their body.

    And then you realize they can see the same about you.


  63. It interesting, there is something about both of your writing that is just “different” – not in a bad way but just different than things I don’t understand or identify with. It seems like you both write the same way I think?

  64. Joel and I have some particular similarities (along with some vast differences), it might be that you have some of those similarities in common with us. I know that before I met Joel I already kind of suspected we might be readable to each other in person, although I didn’t predict how much so it would be.

  65. Laura J, I think I know what you mean about the “difference” in the writing of people such as Amanda and Joel. I noticed it as well, and when I first discovered the writing of these individuals (Amanda in particular), I felt very eerily as if I was reading a narration that I could have written myself. Not with regard to the actual events being written about (since we have all had different specific experiences while growing up), but with regard to the overall tone and feel and rhythm of how the events were described and reflected upon.

    There is just something about the way some people connect ideas and make statements and attach disclaimers and provide detail that seems to be very particular to a certain sort of neurology (and I’m not just talking about autistic neurology here). There are some autistic people whose writing I can barely make head or tail of, but overall there seem to be more autistic than nonautistic people that spark little prickles of familiarity in my brain with their writing.

  66. Laura:

    People do occasionally express skepticism even for more “obvious” disabilities like deafness or mobility impairments. For example, there are apparently some cases where hearing loss can fluctuate wildly from one day to the next (I THINK the first few weeks or months after an attack of meningitis is one example). This can confuse people who don’t understand what’s going on and lead them to accuse the deaf person of faking it.

    But that said, I agree there seems to be a far stronger trend toward trying to discredit any autistic person who happens to be articulate, especially if they break stereotypes by being smart and articulate while wearing diapers and taking 70 steps to make a phone call. And even though I don’t technically KNOW Amanda in the sense of having really interacted with her much (beyond our occasional interactions in this blog, or a couple of emails off blog) or in having ever met her, it bugs me too when people attack her because I feel like I know just enough about her to care about her.

    NT people do vary in how well we “read” each other. It sounds like Amanda and Joel are “naked” to each other in a way that not all NTs necessarily are to each other. Though I do have one NT friend (who I think is just good at reading people in general, plus she knows me) who seems to be able to read me about that well. And I do get some flashes of that with other people too.

    This is not me trying to dismiss the idea that some types of body language are incomprehensible/mysterious for people whose neurological wiring just doesn’t fit the standard (boring? ;-) ) mold. Just an attempt to introduce some texture, if that makes any sense.

  67. I noticed something like that in AnneC’s writing, too, for that matter, yeah.

    There’ve been a few people, including Anne and also my friend Cal, where I’ve occasionally, when reading stuff they’ve written, had to go back and check attribution lines in emails or URLs for blogs to figure out whether it was me or them who wrote it. (I can usually tell more easily with Joel because he doesn’t spell as well as I do.)

  68. This is one of the many reasons I think everyone should use formal manners with each other. I do believe humans really are the most dangerous monkeys on the planet, and need training in order to get along with each other in non-violent ways.

  69. Formal manners are one of those things that sound nice in theory, but they seem to be impossible for me to actually memorize and spit out on cue.

    I mean, even the basics like “Thank you,” I can be incredibly grateful to someone but gratitude doesn’t always translate into the words “thank you”. Etc.

  70. Umm, maybe the “normal” monkeys need the politeness training more, being more rowdy to start with? M’self, I am glad for my training in manners, seeing my tendency to blurt out whatever I think at the moment. I do think my training in manners has saved me from some ass-kickings, from hurting others’s feelings from time to time, and maybe even from arrest, a time or two. I’m glad I can do it, sorry you can’t do it.

  71. Amanda

    Thank you for phrasing it so succinctly and elegantly and clearly:

    And it’s important not to get your sense of self-worth all tied up in whether you’re doing good things, because that actually makes it harder to do the right thing. Because it makes you want to think you’re doing the right thing even when you’re not, so that you can keep up the belief you’re a good person. And when you want to think you’re doing the right thing even when you’re not, it’s easier to just go into denial when you screw up.

    A group I’m involved with has been struggling with power relationships on a variety of axes: class/wealth; race/ethnicity; male/female/other; heterosexual/queer; disabled/non-disabled (and I’ve probably forgotten some).

    Guilt and shame and hurt feelings have interrupted and derailed so many productive conversations!

    I was fortunate this year to learn that I can be humbled without being humiliated. That is, I can understand, yet again, that I’m a human and therefore don’t know everything and will make mistakes. Someone pointed out that I a) didn’t know something and b) had made a mistake, and (most importantly) c) was invited to learn and act differently. That was humbling. For decades I would have reacted with humiliation: shame, terror (this means nobody will love me because I’m a ‘bad person’) and so forth.

    But that’s simply not necessary! In fact, the energy I was spending being humiliated could more productively go towards learning and changing my behavior.

    Given my (limited) experience of the Society of Friends, I suspect that has played some part in developing this insight. In addition to your life experiences, and formidable cognition, were there other resources that helped you formulate this post?

    In less abstract words: can anyone reading point me at other readings or films or music that illuminate and explain why a guilty/shameful reaction to criticism obstructs forward progress?

  72. There is this link which might be useful. I don’t know about others. I did a whole post on do-gooderism that does explore some of this dynamic and has a lot of links.

    And, yeah, being a Friend (and becoming more active in the RSoF as an adult) has helped a lot in figuring this stuff out, at least when dealing with a meeting that actually seems to live up to basic Quaker principles. (Which not all do, some of them do a sort of shadow-imitation of it that I find impossible to navigate.)

  73. At least for now, my philosophy is to base (part) of my self-worth on making sure that I am always TRYING to do the right thing. And, as my dad once pointed out, how do you know you’re really trying unless sometimes you screw up?

  74. Jesse, that’s a really good question . . . I’m interested in seeing others’ suggestions. All that comes to mind for me right now is an illustration of how crowd mentality, and specifically the desire to not look like a fool, can drive people to do the *wrong* thing, even if it’s accompanied by unpleasant guilt — Orwell’s “Shooting an Elephant”.

  75. I wish I knew better how to avoid self-deception. Especially about “What I’m doing here must be right, because I’d hate to think I screwed up”.

    Some of my current strategies:

    *I try to be on the look-out for self-deception and to cut it out when I notice. If I notice that I’m ashamed of a conversation I just had [or of whatever], I try to name why.

    *Writing in my journal, keeping my room clean, and keeping my life in some kind of order (no mountains of procrastinated tasks) seems to help. I don’t whether this one is just me or what.

    *I try to remember what’s at stake in the situation. If I’m thinking about how to help a friend, I try to remember that my friend matters. Usually I’ll find that I care more about my friend [or whatever’s at stake in the situation] than I do about my own ego. And once I notice that, it’s easier to let go of the “I can’t have made a mistake” thing.

    *I think of mistakes as specific and changeable. It’s “I screwed up”, not “I am a total and permanent screw-up”.

    *I try… this one is harder to articulate. But I try to remember what I want from life. And I don’t want my life to be glossy like a magazine cover. I want to be is in contact with my own details and with the details of the outside world. Noticing my faults and my screw-ups is a kind of pointer to what I am, so that I can have grit and texture and honesty in my life instead of glossy faux-happiness.

    Anyone have some other strategies? Or thoughts on these?

    For literature, I’d go with Dave Hingsburger’s pamphlet “Power Tools”.

  76. Pingback: The personal is political « Touchingly Naive

  77. Pingback: RESOURCE: The BIAS FREE Framework: A practical tool for identifying and eliminating social biases « We Can Do

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