07 April, 2010

Feelings are not real

So for some reason I was torturing myself by reading the blogs of a bunch of curebies (I know that curebies is kind of a rude word and I try to be more civil, but I don't know what else to call them). They were talking about how they think Ari Ne'eman doesn't care about individuals with severe ASD.

I disagree, and have said so in previous posts, but that's not really the point. Nothing very exciting was happening. Then, one of the people who was listing Ari's supposed views linked to another website. I clicked on the link, expecting it to be some sort of statement he'd made that had offended them.

However, it was actually this: http://www.asperger-advice.com/asperger-syndrome-behavior.html

Get it? Ari is inherently incapable of understanding other people's feelings! That's why he has the wrong opinions. Because he simply doesn't understand that other people feel bad, and if he could just understand feelings like normal people do, he would have the right opinions.

This is sort of a refreshing break from people who claim that he's not really autistic. Except, it's actually not, because it's a fucking giant piece of hateful bullshit! I should mention that this isn't really about Ari or anyone in particular. It's just a fucking terribly stupid thing to say.

I mean, first, the obvious: this isn't what the ASD "lack of empathy" is about. I don't pretend to know exactly what it is, but here are some ways of thinking about it. (I don't agree with all of these, but I'm trying to be exhaustive.)

1. people with ASD can't read other people's body language instinctively so we don't notice other people's emotions as much
2. people with ASD think about things differently from normal people so we don't have as good a sense of what to expect as they do with each other
3. people with ASD are really overwhelmed by a bunch of stuff and don't have as much energy/processing ability to spare figuring out other people's feelings and reacting to them
4. people with ASD notice things about other people, but we don't always notice the "relevant" thing (remember the Square 8 post where Bev realized that someone was upset because the person's clothes were messy, but no one else noticed because her body language seemed normal?)
5. people with ASD don't understand that other people don't all know the same things we know
6. some combination of the above

So, absolutely none of these characterizations of ASD empathy impairment have anything to do with not caring about people, or not understanding/caring that someone else is upset if you are explicitly told that they are upset. So, what the fuck is this person talking about?

Basically nothing. Basically trying to figure out another way to say that Ari (or insert name here) doesn't have a right to speak.

I'm just going to say something: I don't care about your fucking feelings. Don't you think that I, for example, also have feelings? Lots of people have feelings but only privileged people get to spend four hundred million hours talking about them. If you have a kid who fucking has seizures and bites himself, you know who everyone is supposed to feel sorry for? That's right. You. Not the person who is in actual physical pain and probably feeling terribly overloaded all the time.

People with disabilities are never expected to feel as bad as the people around us. This is why people get away with saying really fucked-up things about their disabled relatives, and even abusing or killing us. Because their feelings are such a huge deal that they totally trump the actual real things that happened to the disabled person.

The funny thing is, I actually have plenty of doom-and-gloom views about ASD and disability in general. I don't think ASD makes me special. I'd rather not have it. I think lots of other ASD people would rather not have it too. But since I'm an actual person with ASD, if I just sat around thinking about how it isn't all that great, I'd become really depressed and useless because it's my entire life and it will never not be there. (By "my entire life" I don't mean that ASD is my only notable quality--I mean that I've never lived without ASD, and I never will, unlike family members of people with ASD who claim to "have autism" or "live with autism").

So, instead of just being like "feelings feelings feelings feelings feelings," I try to look at all the interesting and meaningful aspects of having a disability, and I try to learn about and help other disabled people, and teach and be helped by them. I feel like when I do this it becomes one of the coolest parts of being alive and then I maybe understand why God made me disabled in the first place.

I sort of went off on a tangent and I apologize because I was trying to talk about the really screwed-up "you just think that because you don't have empathy" tack. But this just makes me so upset because it seems to tap into the whole thing about how important feelings (usually non-disabled people's feelings) supposedly are. I'm sure Ari has feelings too, but he doesn't feel the need to spew them all over the place like you do, and he has the grace to say "I disagree with you" instead of "People who don't have autism are incapable of understanding logic," or whatever.


  1. Disagreeing by attacking a person's character is a fallacy, unless there is proof that the person has engaged in unethical behavior, which then can be pointed out because questionable behavior is a valid reason to not support someone.

    You can't merely disagree with someone because you "hate" them: there is no valid argument there.

    I don't hate Ari or ASAN; my not supporting him has absolutely nothing to do with him personally.

    I believe that he believes he has the best intentions and I know that he does: I just disagree with him and find some of his behavior and who he associates himself with questionable.

    I also hate the word "curebie" and never use it. I hate all made up words I see around the autism community e.g. "Aspie," "Autie," etc. If I use them it is usually in a sarcastic manner. Why make up words?

  2. I really don't like the word Aspie and autie, I just don't think they're necessary. Occasionally I use autie in really informal ways when talking with friends, like when I work with ASD kids I call them "baby auties." But if I was writing a post I wouldn't use those words. Aspie just grosses me out because it makes me think of all this elitist bullshit.

    I guess I find the word "curebie" to actually be useful. Even though it's not like I'm actually anti-cure in a theoretical way, I just think it's far from being the most important thing, and I felt like they were attacking Ari on that basis, so that's why I called them that. What word or phrase would you use for people like that?

    I think what bothered me the most is that they didn't even attack his character, they attacked his disability. There are posts there calling him selfish, a "sociopath," etc.--which are statements I wouldn't agree with even I didn't support Ari, but at least they give him agency instead of just saying, "Oh, no, he's too disabled to understand any of this anyway so he's automatically wrong."

    I liked your post on Single Dad Disabled Daughter.

  3. I like your post. Why is everyone so damn picky especially when it comes to people like Ari who are clearly attempting to do MORE good than bad. What would they rather have? More good or nothing. If there is one thing my dad taught me it was to not be nitpicky or whiny about the small stuff.

  4. I mean, it's anti-autism rights people who are saying the empathy shit. So he's not doing any good in their view because he's not freaking out over some hypothetical cure.

    I know that some pro-autism rights people are also not supporters of him, but I wouldn't say they're being hateful (at least in the majority of cases).

  5. 錢,給你帶來歡愉的日子,但不給你帶來和平與幸福........................................

  6. "Curebies," eh, I wish there were a better word, too, but that is what we seem to be stuck with at the moment.

    Having worked at schools, group homes, summer camps and respite/treatment programs for people with autism I have met a LOT of parents and families. Since this issue is already so articulately debated by others, the only thing I feel like adding to the debate is family happiness.

    The families I've worked with who accept their children, despite their autism or other disabilities, are the happy ones. They may experience elements of grief cyclically, but they overall are content with what life has dished out to them.

    The more "curebie" parents I've worked with, and oh they are ABUNDANT, are usually absolutely miserable and angry. They are unable to speak of their children as living people and all too frequently use them as guinea pigs for whatever new quack treatment is available, all in the name of helping them.

    Now, granted, being a curebie or an accepting parent doesn't inherently guarantee happiness. I've seen the reverse as well, but in my experience it is almost totally polarized: happy families on one side, miserable, broken people on the other.

  7. how is Kiddo's family? You mentioned he's a lot happier than he used to be when he was little. Do you think part of it is his parents being more used to his disability?

    It's funny because I am hardcore against the idea that "autism with intellectual disability" is a common comorbidity--I don't think that's what nonverbal autism is about. At all. But at the same time I see autism and intellectual disability as being much more interrelated than some people do. I almost see us as being part of the same group (but not a flat spectrum from mildest to severest--just tons of familiarity and overlap and relaatedness between ASD and ID). And I wish that other people felt this way because I feel like stuff would be so much better for autistic people if we were just thought of the way intellectually disabled people are. We're here, we're impaired, get used to it.