This is the only thing I want in the world

(except that I'd have to cross out the word "not," but that's a sacrifice I am willing to make.)

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.

Recommended Reading Number One

First, the geek stuff:

Five Geek Social Fallacies. I guess this is a really old and classic thing but I just encountered it for the first time. I actually don't socialize in groups very much but I do think it's interesting to think about how socialization is different among people who didn't socialize when they were younger.

Better Late Than Never? The Office by Zack Handlen at the Onion AV Club. This is interesting because I've had a problem since I was a little kid with fiction where characters are about to get caught doing something wrong--like, I'd have to leave the room during movies and stuff. I find it really hard to watch/read things where characters cheat, lie, or impersonate other people because I get anxious about the idea that they're going to get caught.

Then, this wonderful post at FWD/Forward by Anna: Jenny McCarthy & Autism Part 2: Let's All Be Normal (Acting). The post isn't actually about Jenny McCarthy or even really specifically about autism, but is about the pressure that non-disabled parents of disabled kids put on their kids to act less disabled.

Today the FWD/Forward Recommended Reading included this post, AngryBlackBitch: On Autism Awareness, by a woman who is a guardian of her ASD brother. There are some problematic aspects as Kowalski pointed out in her comment on the FWD/Forward post, but overall I think it's really nice. That post reminded me of a post I found that's a few years old and was written in response to the Ashley Treatment, by someone whose sister is severely intellectually disabled: Fit of Pique: Growing Up with Sky.

Also Dave Hingsburger has continued to post awesome videos with transcripts: Change Begins, about witnessing abuse in an institution and being pressured to keep quiet about it; and Sean--An Evening Out, about treating a teenager with severe CP like a person. His Easter post is also beautiful.

I hope this post isn't annoying or anything. I don't know if I will make another like it--I mean, I probably will, but I don't know when. I just find things I like and I get excited and want to make sure everyone else gets a chance to like them too.

Quote of the day:
"Facebook is a lot of fun. I always pretended not to like Facebook when I thought I was too cool for school, but now I really like it. All these girls comment on things I do, which is not all like real life."--John

Before recommended reading

I feel hesitant about linking things that are related to the state of being a geek or school outcast. I really don't like the equation of mainstreamed ASD people with these roles. (This is a very unorthodox use of the word mainstreamed but I try to avoid words like "high-functioning" because I'm not actually talking about how good the person's life is or how accomplished they are. When I say mainstreamed I mean people who aren't immediately socially categorized as "disabled" and can be fit into other social roles such as space case, manic pixie dream girl, geek, stoner, unstable artist, etc.) The thing is that ASD isn't considered to be something that manic pixie dream girls are always self-diagnosing themselves with, and people aren't always responding to a description of Asperger's with, "Oh, that just sounds like a manic pixie dream girl." So when I write about my use of or identification with the MPDG social role, I don't feel that it's undermining my identity as a disabled person. I do feel that way about the geek and social outcast roles because they are so often invoked to create a slippery slope where milder forms of ASD are not "real."

But, okay: most mainstreamed ASD people are some kind of geek, and are or have been some kind of school outcast. (I'm actually not a geek, I don't think. To me being a geek means your social life is based on your interests. My interests, like my religion and the fact that I'm disabled, are an important part of who I am but not something I have in common with most of my friends.)

Anyway, what I'm trying to say is that FWD/Forward does "Recommended Reading" posts, and I love FWD/Forward. And. Sometimes I see stuff and want to link it. But some of the stuff is not actually Disability Stuff but it feels like that to me, because it relates to social roles and experiences that I think are more common for ASD people. But I don't want to do the ASD = geek thing. But it feels related!

So. I'm going to do some "Recommended Reading" posts sometimes and some of the posts are going to be things that were written about weird, non-ASD people. But I'm still disabled, okay?

Some more reading

I was going to tell this to Lion Face but it's not really an LF-specific story so I will just tell you. Last week I was at the doctor's office when a DD person came in. The reason I'm using the umbrella term, even though I know he was intellectually disabled and not ASD, is that the reason I read him was his body language. There are some DD people who have a really distinctive, dramatic way of walking, and I think anyone could read them, but I like to think that my reading of this guy wasn't something that just anyone could do. Without being at all critical of the intellectually disabled people I know in Ohio, who tend to dress in a distinctive way, I'll say that he didn't dress like them. He was wearing an orange striped polo shirt and khaki pants. He looked nice.

The way he moved was nice too. How do I say this? The shape of his smile, but mostly just the fact that he wanted to do things he wasn't doing. He waited for his aide to go in and talk to the nurse, and he started to twist his legs around, started to bend one of his legs up, but kind of stopped himself and put his leg back down.

His aide came out and sat down next to him. And the nicest thing happened--they looked at each other and grinned sneakily. I'd almost forgotten why I used to want to work with adults, but the potential for sneaky grinning is definitely the number one reason. (I'm probably going to work with adults because I think there's a greater need for sincere and ethical support staff when it comes to adults. But in light of recent events, i.e. Joe Cuteness, I've started feeling more reluctant about the idea of not working with kids.)

I wanted to talk to the guy, but I felt weird. His aide went over to the receptionist and he looked at a magazine. I felt like he was aware of my presence because he kept doing almost-stimmy movements with his hands, but when I looked up (I was sitting across from him) he would stop. So I said, "What are you reading?" and he said excitedly, "Good!" and I said "What's it about?" and he indicated that he hadn't really started looking through the magazine yet, and I said, "Well, what are you going to read?" and he looked through the magazine for a minute and then his aide came and got him to go up to the reception desk.

Cut to me feeling weird. Is it okay for me to bug other DD people and try to talk to them? And I mean, let's be honest--it may feel the same to me, I may feel plugged into them in a sense I don't feel with non-disabled people, but we're basically looking at an apparently normal person striking up a conversation with a person who (while almost passing when he doesn't talk) is moderately to severely intellectually disabled. Doesn't that seem patronizing, or something?

I wasn't being charitable. His way of holding himself warmed something in me. It's really, really nice to see other people who move differently--it's funny, because who knows if the way I move even looks that strange--I'm not masochistic enough to ever videotape myself walking. But it's such a deep part of me, it feels like a huge barrier between me and everyone else.

For the past year I've been mildly crushing on a straight girl I don't really know, who has a jerky way of moving. I mentioned it to Noah--I mean, he knew that I liked her, but I was saying that it was a little bit about her being awkward, both as a person and the way she walks--and he said, "Oh--I didn't know if you could tell if other people are weird or not," and I said I could, and he said, "Do you know the way you walk is a little funny--" and I said yeah.

(I guess that exchange makes Noah sound like a jerk. I don't know. I find him an easy person to be with in a lot of ways. Sometimes when I see people I really like, I stretch my hand out towards them, and when I do it to Noah he imitates me and pretends to be a deejay.)

sometimes the best self-advocacy is shutting the fuck up

I really, really don't want to write about disability for normal people.

I don't want to explain that I don't see people as objects. I don't want to explain that I'm not just imagining that I have a disability. I don't want to have to make an analogy where I go, "Some people with cerebral palsy can talk and some can't, they all have cerebral palsy, and it's the same with autism spectrum disorders." (Also, who knows if people will even get that. My dad thinks that the reason CK can walk is that he's really energetic and determined.)

I have recently been trying to have these conversations with my mom. I don't know why. I just get told that, for example, I should imagine why someone might kill their kid with a disability. This really upsets me because it's not that I don't have compassion for people who do bad things, but constantly reminding me to have compassion for a particular group of people who do bad things seems to imply that what they do is less bad than what other people do.

My mom said that maybe when I'm older I'll learn not to be so emotionally affected by things like the ableism in Precious. When she was trying to explain why Autism Speaks is okay, I said, "It's different for me because all this stuff directly affects me," and my mom got mad and said, "Don't you think autism affects me?"

Well, apparently not. Because if it affected you I think you'd probably understand a fraction of what I'm talking about.

(Don't think it's just my mom. It's not just my mom.)

I'm not even a radical. But you know what, I'm sick of caring whether anyone thinks I am. Actually, I'm just not going to try to engage with any normal people about this stuff ever again. I've been trying to understand why I'm so depressed all the time now, and I think it's because I've developed this idea that I should be trying to express myself on these issues in Real Life. I think I'm going to throw in the towel, not tell anyone I have ASD unless they definitely need to know, pull out all my passing stops, and not fucking talk about this shit anymore.

I like writing this blog because I think some people are affected by it. I like working with other DD people, because I think some of them are affected by it. Those are the only things I want to do, disability-wise, and I don't want to feel guilty. I want to compartmentalize my identity and my beliefs. I think I'm going to have a great time.

facebook