I got in an argument with a friend, as one does, and said something I may not have actually come out and said on the Internet before, but it is the basis of a lot of things I think. I really respect her for being willing to have this conversation with me.

her: i don't want to have a child with a disability because i know that if i do i will have to, in fact, love that kid like crazy and put my everything towards its thriving. i mean, depends on the disability but i think that a lot of parents do struggle with that

me: okay well, I don't mean to be a dick, but just so you know people can accidentally have a child with a disability, my mom did, obviously. so, like, keep it in mind b/c I always hear people being like "I'm not going to have a kid with a disability because I can't handle, so I'm getting amnio" or whatever. and I'm like....ehh.

her: no, of course but amanda, i don't mean to downplay whatever your mom went through, but you obviously do not have as severe a disability as someone with downs. if my kid had aspergers it would be really different

me: oh my gosh, for real?

her: yeah of course

me: how many people do you know with down syndrome

her: well, only patients

me: I know a lot of people with down syndrome and when people say things like that I wish they could know all the people I know

her: but anything really, whether it was downs or something like marfans or fragile x. i know that they are and can be really, really awesome people to know. and i'm not saying i wish that they don't exist or anything like that at all, it's just obviously they aren't easy kids to raise.

me: you think marfan's is worse than autism?

her: i don't think marfans is worse than autism, but there is a spectrum with autism

me: okay like, I don't want to be a dick to you b/c I think you're really cool but...this is really silly

her: no it's cool, i want to know what you think

me: and I know you feel like "Amanda's not really disabled, she's my friend, but ~some people are really disabled and I feel different about them~" sorry if that's a harsh way to put it, but something I have noticed about the way people talking about parenting a disabled child: people can frame any disability however they want, like, oh it's really difficult, so difficult that the parent doesn't have to be judged for any decisions they make, ever.

I actually think something that has made this really clear for me is that autism is a really stigmatized disability in terms of kids with autism supposedly being really, I don't know, cold and smearing shit or something, and with down syndrome there's more a stereotype of kids being sweet--so actually you see parents being able to frame raising a kid with autism in a really negative way, much more negative than parents can usually get away with when it comes to ds, even if you compare two essays/blogs/interviews/whatever where the kid with autism is more independent or whatever than the kid with ds. and that is why I find the "your disability is milder" thing to be kind of a red herring.

I grew up disabled in a really stereotypical way, like I felt really guilty and like a huge burden. it doesn't really matter what disability I have, it's a cultural experience that people have across levels of independence, IQ, etc.

(additional note: I was predicted not to be able to live independently, or at least that was implied, and this hangs over like...every conversation I have with my parents. it's a huge factor in our relationship and in how I live--and actually, in my abilities as well. and sometimes it annoys me when whether someone actually CAN live independently is treated as the most important thing when they're talking about disability or ableism. because tons of stuff can happen to you just because of predictions that someone made about you when you were little, and that matters even if the predictions were wrong!)

this is a collection of tumblr posts so it may get longer

Maybe you know what's going on. If you don't that's okay. I don't want to use the person's name and maybe that's dumb but it just seems like such an archetypal situation that I don't see the point of causing drama. He seems unreachable. If you know who this is you already know. It's a non-disabled parent vs. disabled people internet drama thing. It is taking a lot out of me and I'm not even directly involved.

Zero

[I deleted this post immediately after making it]

has ted ever considered treating other people with 1% compassion? just do it! it'll be great!

One

also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.

it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:

“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”

okay dude, so let’s look at this.

basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.

but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)

anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!

but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”

IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!

Two

[obviously, this was also a direct comment on one of his posts]

Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)

So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.

The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.

I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.

(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)

Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.

Three

“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter


HEAD MEET DESK
FOREVER

but….but….HE IS HAVING IT!!! so therefore he ALSO sucks

and you’re talking about it on twitter so you suck too!

everyone sucks! we all have luxurious not-really-disabled lives!

[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]

Four

you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)

I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.

so ted was like…okay. That makes sense. I was jealous too.

yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”

now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.

it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.

but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.

different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?

now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.

imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?

not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?

this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.

his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”

what if we were all really disabled?

what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?

I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.

Five

from my favorite story:

Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."

"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.

Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."

Your feelings are the feelings of a dick

Mourning people who are alive is fucked up. Fact! Members of the international brethren of people who are not dicks have been talking about this for fucking ever. Most of us are disabled though, especially when it comes to mourning people with autism. So try to understand how AMAZING Tom Fields-Meyer's post on Motherlode, the New York Times parenting blog, is.

Poor Fields-Meyer had the nerve to write a book about raising a son with autism, in which he outright says that he didn't grieve for his imaginary non-disabled child. After being encouraged to grieve by a counselor:

I had no instinct to mourn. I had carried no conscious notion of what my children would be like — boys or girls, tall or short, conventional or a bit odd. I planned only to love them.

Fields-Meyer was obviously dealing with some difficult stuff and doesn't make an effort to hide it, but nonetheless, after Lisa Belkin quoted him in Motherlode she got a comment from someone "bristling over the whole assertion that [Fields-Meyer] never needed to mourn...as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme." Yeah, fuck you, Tom Fields-Meyer! How dare you feel different from how someone else thinks everyone feels?

Fields-Meyer wrote a pretty sweet guest post on Motherlode where he basically defends his lack of mourning. He doesn't tell anyone what they should be doing or feeling, but he doesn't really make it sound like not mourning is just an emotional reaction. It's a principle.

I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.

The international brethren of people who aren't dicks rejoiced. But what did everyone else do?



I'm sorry to tell you that sometimes I read the Twitter of someone whose Twitter I shouldn't read. It makes life awful. Sometimes it puts me in a bad mood for the rest of the day. Anyway, I was moseying along reading this person's Twitter, when my bad mood arrived!

The person and their friends were talking about how "skeptical" they were that Tom Fields-Meyer wasn't lying about his emotional reaction to having a disabled child, and insisting that they "weren't bad parents for saying it's hard." Did anyone say they were bad parents? Did anyone say it wasn't hard? (But you know that.) Basically Fields-Meyer gets turned into this GUILT MONSTER who's yelling at parents who grieve--parents who, I have to say, started this whole thing by accusing him of lying about his own feelings. Eventually the parents settled down a little--like, "Well, I guess it's okay for him to feel that way as long as no one is saying or implying anything negative about parents who grieve, or being judgmental about other parents' reactions."

Oh thank God. Those poor parents who grieve can't even step out the door without the vast throngs of judgmental parents who don't grieve just railroading over them and accusing them of being bad parents who don't understand how 100% footloose and fancy free it is to raise a kid with a disability. I am so sorry guys. Life is TOUGH.

This scenario doesn't really sound like anything I've ever seen in my life--like I said, the international brethren of people who aren't dicks is not a big group of people, especially when it comes to parent membership. But you know what, even if it was? No one has the right to have everyone agree with and support everything they do. Having a disabled kid doesn't give you that right and neither does anything else. People are allowed to disagree with you--both in a fairly gentle way where they just say that they prefer to do things differently, and by telling you that you're a major dick for doing things the way you do.

I personally feel that grieving for a person who is alive is fucked up, just like lots of other feelings that people have. I believe that there are feelings that are WRONG. Now, I am Christian, so I may talk about these things in a different way from people who aren't Christian, but what I mean is that we all are bad inside and have bad feelings, and sometimes we have to recognize a bad feeling and treat it like one. Some examples off the top of my head:

I hate waiting in line. Sometimes I want to scream or break something because I'm frustrated in line. Even when I'm not that worn out, I still can feel kind of angry at the other people in line, even though they're not doing anything bad to me. These are bad feelings and I shouldn't tell everyone in line that I'm mad at them.

Some people who don't know anyone who is trans might feel nervous and self-conscious upon meeting a trans person for the first time, or be consumed with nitpicky questions about how to treat the person "correctly." When you're in this situation, you wouldn't tell the person how uncomfortable you feel that they're trans, nor I hope would you go around telling a bunch of other people how uncomfortable you are. It's pretty rude and is going to make the awkwardness much worse.

A teenager sometimes feels jealous of her brother with a terminal illness, because he gets so much attention. She can't help how she feels, but is it reasonable? Would it be fair for her to talk about it constantly and insist that everyone around her validate her feeling?

And to return to an example that Fields-Meyer briefly touched on--some parents mourn when they find out their kid is gay. It's not necessarily as dramatic as disowning the kid. They just feel really sad because they thought they were going to have a straight kid who would do certain things, and now they have a gay kid who is going to do things differently.

How do people who don't consider themselves anti-gay think about these feelings?

People admit to having them. People admit to being sad and having to adjust, but ultimately these feelings are something to get past, and they are fucked up. They are feelings that come from living in an anti-gay society, and they are anti-gay feelings--the feelings of a world that wants everyone to be straight. Those feelings don't make you evil, but they are something awkward, something that can cause distance and a failure to connect with the real child--something to surmount. These feelings definitely aren't elevated as something parents have to have to have a valid experience. You wouldn't, I hope, accuse someone of being dishonest because they said they didn't mourn for their gay child.

I don't condemn anyone for having particular feelings but there is an obvious distinction between having feelings that are ableist--that come from a world that wants everyone to be non-disabled--and blaring those feelings in public with a self-righteousness that almost looks like pride. There's a difference between saying, "Wow, this blows, I'm having these awful feelings," and saying, "I have these feelings, and so does everyone, and don't ever judge me for having them or even make me think that you might be judging me." Because once you're doing things the second way, you're not just having the feelings, you're treating them like they're sacred. Like your right not to feel guilty for having picked up some ableism in your life trumps everyone else's right to be anti-ableist, or have opinions about parenting, or have opinions about anything that might involve you being wrong.

But okay guys, I have to talk about the guilt thing now. You can't even handle feeling guilty for a second on the Internet because some other guy might be "more self-actualized" than you are. You can't handle someone telling you that your feelings, although real, do not make sense. You can't handle someone like me coming out and saying, hey! Your feelings are bad!

If you can't handle that much guilt and judgment, how do you think you would deal with the guilt of being a disabled kid whose parents publicly talk about the fact that they expected a non-disabled kid and were heartbroken not to get one? Whose parents constantly defend their right to feel that way even when other people point out the dangers of nursing and normalizing those reactions?

I admit that most of this post has been making fun of you, because I've lived with guilt for too long to have patience for people who can't handle it. But I sincerely urge you to think about it, if you are one of those people and you somehow ended up here.

Fallacy Week: Undisabling Fallacies

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

Undisabling Fallacies

Undisabling is when someone is speaking as a person with a disability, and you convince them that they don’t have a right to do that. I’m not going to go over these fallacies with a fine-toothed comb because a)there are tons of them, and b)they often contain elements of the Harder Fallacy, the Shocking Behavior Fallacy, and the Suddenly Specific Definition Fallacy–so they should be pretty easy to figure out.
I should probably mention that a lot of the other fallacies are pretty innocent and are often used by people who don’t have these conversations very much and aren’t really thinking about what they’re saying. Undisabling fallacies tend to be used by people who are very very involved in these issues, and are really vicious.

1. Mary tries to convince John that his disability either isn’t real, or isn’t severe enough for him to have an opinion. She does this by trying to make him feel guilty by telling him something bad that happened to someone else with the same disability. For example, if John has muscular dystrophy, Mary could tell him about someone she knew with muscular dystrophy who died when they were very young. John is set up as seeming to claim a bad experience that he didn’t have. He feels bad. This is the Suddenly Specific Definition Fallacy, and is closely related to the Shocking Behavior Fallacy, although it’s not an exact application.
2. John says something that goes against disability being the Super Sad Worst Thing–probably it was about Thomas the Tank Engine, knowing him. Mary takes this to mean that John is happy and doesn’t see his disability as a problem at all; therefore, she says, his disability must not be very severe; therefore he doesn’t understand. This is both the Harder Fallacy and the Suddenly Specific Definition Fallacy.
3. A really souped-up version of #1 where Mary tries to pick a behavior that she thinks will really gross John out, to the point that he’ll get super confused and never say anything about disability ever. I’ve seen some people in the Autistic community use the phrase “You don’t smear feces!” as an inside joke because it is so consistently used in this type of fallacy.
4. John is being insensitive to Mary’s very negative feelings about disability by stating his own feelings and opinions, which of course she takes as being very positive because they are not like hers. Kind of Harder Fallacy-ish. Also kind of ties into what I’m about to describe. Since I am posting this in pieces, you'll have to wait till tomorrow if you're reading this on ISE!

Fallacy Week: The Shocking Behavior Fallacy & The Suddenly Specific Definition Fallacy

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

The Shocking Behavior Fallacy

MARY: My nephew Ralph has autism and it’s really sad. He insists on watching Thomas the Tank Engine every day, and he’s sixteen.
JOHN: Why is that sad? There’s nothing inherently wrong with an older person liking things that are aimed at kids. I feel like in our society, people label a lot of things as problems that aren’t actually problems.
MARY: That’s really insensitive. Ralph bites himself so badly that he has to go to the hospital.

Rebuttal:
John didn’t say that it’s not a problem to seriously hurt yourself, nor did he say that Ralph doesn’t have any problems. But Mary reacted as though he did say that, and now John is knocked off balance. He wonders, did he say that? How can he explain that that has nothing to do with what he was saying? Is there anything he can say now to avoid giving the impression that he thinks self-injury is okay?
In the Shocking Behavior Fallacy, you can use a shocking behavior to excuse something unrelated that you did to or said about the person who has the behavior. The fallacy functions by changing a very specific statement to a general one. Mary changed John’s specific statement–watching Thomas the Tank Engine is okay–to a very general statement–everything Ralph does is okay. Now she can prove John wrong by giving an example of something Ralph does that is not okay.

(Fun fact: This is actually one of the most dangerous fallacies in use. By equating one thing a person does with everything that person does, it creates a class of people about whose treatment no one is allowed to complain. Let’s change the example a little and say that Mary is a staff person working in an institution, and every time she sees Ralph trying to watch Thomas the Tank Engine she takes points away from him, which means that he doesn’t get to go on day trips. John thinks that Mary is micromanaging Ralph’s choices in an abusive way. Mary responds that Ralph has to be monitored closely and dealt with harshly because his problems are so severe; he bites himself, remember?
Professionals can fall into an inverse of the Shocking Behavior Fallacy, where instead of going from specific to general to shocking behavior, they go from shocking behavior to general to specific. Ralph has a really big problem, but instead of thinking of it as one problem, Mary starts thinking of it as who Ralph is. So whenever Mary sees Ralph doing something she doesn’t agree with, she responds as if he is biting himself. The results can be horrifying.)

The Suddenly Specific Definition Fallacy

JOHN: It bothers me that doctors tell pregnant women that people with Down Syndrome can’t count change. They advise women to abort people like me, when they don’t even know what someone with Down Syndrome can do.
MARY: But most people with Down Syndrome aren’t like you. Just think, it would be so hard to have a kid who could never live on their own.

Rebuttal:
In this fallacy, you tell a person with a disability that they can’t use their feelings or experiences to make a point about their disability, because you just made a new, more specific definition of the group of people being talked about-–a definition which no longer includes them. Mary has transformed John from someone who had authority on the subject, due to his experience, to someone whose experiences aren’t valid because he’s an exception.
Let’s briefly accept Mary’s new definition of someone with Down Syndrome-–a person who can never live on their own. It’s true, John could have some opinions about whether it’s wrong to abort such a person, but he can’t speak as someone from that particular group. But guess what? The prenatal test doesn’t measure whether someone could live on their own, it just measures whether they have Down Syndrome. If a fetus exactly like John is diagnosed with Down Syndrome, it doesn’t get a break because it’s John. Its mother’s doctor is just as likely to present the diagnosis as bad news, encourage an abortion, and list a bunch of things the child won’t be able to do that may or may not be true of the John-fetus in particular, or people with Down Syndrome in general. Being an exception gets the John-fetus absolutely nothing.
The reason the Suddenly Specific Definition Fallacy is a fallacy is because of its suddenness. Stuff goes along, people with a particular disability are getting discriminated against, mild and severe alike. Everyone’s welcome in the stigmatized group. Then someone says, “Hey, I have this disability and all these things you’re saying about my disability aren’t true.” Bam! Apply the Suddenly Specific Definition Fallacy and remove the person’s authority (they can keep the stigma).

(Fun fact: I’m sorry if the example comes off as melodramatic, but I’ve read a lot about this stuff and John is not exaggerating.)

can't imagine, can't judge?

(from LOVE-NOS)

Adelaide, actually I didn’t understand what line you were referring to with the terrible vs. unimaginable thing. I’ve been thinking about it more.
I think the difference between terrible and unimaginable is huge.

on the one hand, you can’t completely imagine anything if it isn’t your experience–and everyone should accept that that’s true.

for example, I grew up in a rich family. so if someone’s from a working-class family I’m obviously going to be like, I can’t speak from their experience and I’m going to give more weight to their opinions than mine re: class issues because I’m surely unaware of a lot of stuff. same for other oppressed groups that I don’t belong to. and I guess this is one kind of way of saying, “I can’t imagine your experience–not necessarily because I think it’s a terrible experience, but just, no matter what it is, because it’s not mine. so I’m not going to behave like an authority." But there are limits to this; if I strongly strongly disagree with someone’s actions/beliefs and they attribute their actions/beliefs to an oppressed identity or a terrible experience that I don’t have, and I really think about it but I just think what they did/think is not ethical at all…well, I’m still going to think it’s not ethical.

that’s not totally related but I feel like the response of “I can’t imagine your experience so I can’t judge you” is in SOME WAYS a good response to have, but I feel like when it comes to parents of disabled children, it gets way overdone. the raising/having of a disabled child is seen as so unimaginably terrible that other people are put in the position of feeling like they’re absolutely not ever, ever allowed to judge parents. of course we see this when parents of disabled children kill or seriously abuse their children or put their children in facilities where they are given shocks or take out their kids’ uteruses. anyone who criticizes these parents is constantly told, “you don’t understand the emotional pain/the financial pressure/the physical strain/the lack of free time these parents have.”

of course I don’t understand personally, because I’m not a parent. I try to be as aware as I can. I try to read blogs/watch movies/etc. about people with severe disabilities and their families so that I don’t just project my own experience of disability onto other people and families. I work with people with severe disabilities (I don’t do this to improve my thinking or anything, but just because it’s the type of work I enjoy the most and am good at-–but it helps my thinking, too). I try to think about how all those things could affect a parent–-and I also know that since I am not a parent, I can’t really imagine how it is.

at the same time, I think I can imagine enough to say: there are certain things that no parent should ever do to their kid. It’s not okay. I don’t believe there is some secret feeling that I can’t conceive of, that I would experience if I had a disabled child, and in this feeling would be the reason it is morally acceptable for me to abuse or kill my kid.

so, yes, I can’t imagine other people’s experiences-–but not to an extent where I am going to say, oh, I think certain experiences are so terrible that I’m not even going to begin to think about them, I’m just going to completely detach and not have any opinions about what it’s ethical for that person to do.

Here's the thing. I don't owe you anything.

I'm so fucking sorry for having a similar disability to yours, and writing about disability and ableism on the Internet. Sorry for being good friends with you for a few months and continuing to stay somewhat in contact for a year after that--although not very close contact, partly because we don't have much in common, but also because of your insistence that I'm a hypocrite for not helping you more.

I'm sorry your life sucks, but it's not my fault it happened nor is it my job (or within my abilities) to fix your problems.

You sent me an email telling me to "mind the gap" between my public writing and who I actually am. Actually, there is no gap, since I never made a post on my blog saying I wanted to devote energy I don't have to supporting anyone with autism who asks for my support. You are the reason that I'm stonewalling this guy with ASD who has contacted me and seems to really want to talk to someone and in all likelihood is a nice person. You are the reason I'm standoffish when people with ASD contact me on the Internet, because you have made me feel like everyone I give the time of day is going to start pulling out my insides and that's what I deserve for writing a blog.

on being grossed out

First off I should probably mention I'm going to try to be posting here less. I'm doing a massive amount of stuff in school and if I don't allow myself to be sucked in by the material I'll be really screwed. And anti-ableism is unfortunately able to suck me in again and again; I can think of one class I've been invested in since I started writing this blog.

I made another very long LOVE-NOS post called Some common fallacies and rebuttals, starring the Harder Fallacy, the Uncomfortable Fallacy, and all the other fallacies you've grown to know and love if you're disabled and you sometimes open your mouth (or whatever you use to talk) and express your own opinions.

Anyway, I figured a good way to transition myself into my medieval mysticism seminar is by talking about the experience of being grossed out. Like some mystics, I believe being grossed out and caving in to that is wrong.

There's a particular animal that I'm going to refrain from naming here, but a lot of people are scared of it, including me. I was recently reading the blog of someone who had a picture of the animal in question, and I flipped out. This has actually happened to me before with the same animal, except it was on my LiveJournal friends list so I immediately slammed my computer shut, opened it again with my eyes half closed, closed the browser, opened LiveJournal again, and defriended the community that had inexplicably decided to make a macro of Jonathan Groff's head on this animal.

I can't predict exactly what will happen to me the moment I die, but the only thing I can imagine is that God will be there in the form of that animal, and I won't be able to move forward until I can love God in that shape.

A lot of people are grossed out by a lot of things. The idea that we are grossed out by things because they are bad is the uncomfortable fallacy ("confusing a feeling with a fact"). So with that in mind, I'd like to talk to you about smearing feces.

In my fallacies post, I discussed the use of shock in the Shocking Behavior Fallacy and Undisabling Fallacies--the first is, "You can't tell me that the way I treat Ralph is wrong, because he bangs his head," and the second is, "You don't have the same disability as Ralph, because he bangs his head." Basically you introduce something shocking to try to distract from the fact that what you said doesn't make any sense.

I kept rewriting the examples for these fallacies, because when people use these fallacies in real life, it is so common for the shocking behavior to be something related to shit--usually, smearing it or playing with it. However, whenever I used "smearing feces" as the behavior in my examples, I ended up wanting to write a really long aside discussing how much it disturbs me when family members or professionals use someone's behavior as a gross-out tactic to try to keep you from identifying with them and defending them; and how much it disturbs me when that works. So I kept the feces references to a minimum, pretty much, and figured I would save that for another post, which is this post.

It's not as embarrassing when headbanging or biting or something works as a tactic to silence you--because it's not quite as low a tactic. When someone says, "you don't get to talk about autism, my kid hurts herself really badly," you might experience empathy for the kid; you might experience that pain for a second, imagine what it is like to hit your head on the side of a bathtub, and if it's never happened to you maybe you end up thinking--"I shouldn't talk about autism. I don't know what that kid feels like. I should leave this to someone else, who knows better."

I do think this is being taken in by a fallacy, for reasons I discussed in the fallacies post; but maybe it's a failure of reacting with compassion and not knowing how to use that compassion, of being afraid to intrude on the reality of someone who hits her head in the bathtub--of feeling like you've claimed an experience that isn't yours, by saying that you two belong to the same general group.

The shit thing, on the other hand.

No one who uses "smearing feces" in a Shocking Behavior or Undisabling Fallacy is aiming for the person they're arguing with to have empathy for the kid; and no one's who's taken in by "smearing feces" is having empathy for the kid. Smearing feces is an upsetting idea not in the way that self-injury is--it hurts the person doing it--but because you get grossed out thinking about the person who has to clean it up.

So when someone tries to shut you up by saying, "You don't have it as bad as my kid, my kid smears feces," they're actually not saying, "You don't have it as bad as my kid," they're saying, "You don't have it as bad as me because I have to be related to someone who did something gross." They're not saying, "You don't get to talk because you don't have it as bad as my kid," they're saying what...well, what a lot of them are saying deep down--"You don't get to talk because you are a kid (i.e. disabled), and we are talking about non-disabled people here." This proves why no matter how disabled someone is, they are never allowed to talk.

If we're having a contest, yes, I've been direct support staff, shit is not a thing of beauty and a joy forever. But I don't think it really needs to be put on this ultimate anti-pedestal of THE WORST THING. ANYONE COULD EVER TOUCH. IN THE WORLD, where you hear "plays with shit," "smears shit," "wears diapers," "has accidents," and that can actually put you into a tailspin of "I cannot relate to the person who does that and I cannot judge the person who has to clean it up." You can relate to everyone, and you are allowed to state when someone is being abusive, has committed a murder, or simply is saying something that you don't think is true.

It's just bodies. There's still right and wrong.

The Classic Disability Catch-22

(this is pretty basic, I'm sort of writing it to use for something else)

Conflict: A disabled person is faced with some kind of task that because of their disability seems impossible, or, if not completely impossible, so incredibly hard and draining that it probably wouldn't be a good idea to take on. This can happen in two ways:

1. The person is expected to complete the task. Other people don't think of the person as disabled; or, people like family and friends are very intent on the idea that while the person may once have been disabled, they are now not disabled anymore. Because of this pressure, the person doesn't feel like it's acceptable for them to say, "I can't do this." If they refuse to complete the task or fail in the attempt to complete it, they will either be seen as a non-disabled person who is lazy and weak, or they will be recognized as disabled, and demoted to the stigmatized category #2 experiences.

2. The person is expected not to complete the task, or no one wants them to complete the task. However, the completion of the task is the only way for the person to get something important to them; in the eyes of other people, the only thing that will make the person qualified for that important thing is the completion of this particular task. (Tell me if this is too abstract, because I can think of a lot of examples but I don't want to lengthen this unnecessarily.) If the person does not attempt the task, or tries and fails, they will have to continue living the life that's expected of them, which they don't want.

Resolution: A lot of disabled people end up doing things that are very very hard for them. Some people fail. And often success can feel just as bad as failure because working so high above your ability level can have effects on your mental or physical health, relationships, and general quality of life.

The Classic Disability Catch-22

Some of the people who do this may happen to refer to themselves as disabled (or as having whatever their particular disability is). They may do this to explain a problem to someone in their life, they may do it just in the process of describing themselves, or they may be identifying as disabled while they are engaging in some kind of self-advocacy or disability rights work.

And when this identification happens, other people often respond, "You're not really disabled, because you completed this task." (Or they admit that you are disabled but they say that you're not disabled enough to count.) Disabled and non-disabled people both engage in this sometimes against disabled people.

I don't necessarily like the idea of saying that certain phrases are always offensive and shouldn't ever be used. I guess I can imagine there probably is one person in the world claiming that certain things are really hard for them when they really aren't. But I find The Classic Disability Catch-22 to be such an extremely hateful and unfair situation--to basically refuse someone their identity or refuse to listen to their experiences as a disabled person, because of "the task" which is frequently making their life unbearable. It's basically like having people deny you your identity because you smashed your finger in a door. Smashing your finger in a door already sucks, guys!

Thoughts?

This isn't really complete and it's like 3 posts in one

Hi, kids. Today I want to talk about sadness and rage. Or basically any related emotion or combination of the two that causes the people around you to be uncomfortable. An easy way to talk about this is by talking about Autism Every Day, which has been beaten to within an inch of its life, and I certainly don't have anything new to say about it, but look at this:



This is the title card of the movie, which as you know is basically a propaganda piece about how hard it is to live with someone who has autism. If I remember right, the movie features montages of young people with autism crying and screaming.

A friend of mine, who is usually pretty social-justice-y and good on disability stuff, watched this movie for the first time, and after watching about a minute of it, she said, "Wow, I didn't know autism was this bad, maybe I wouldn't be able to handle this either if I was a parent." And I felt sad that she had this response, because to me the portrayal of emotion in this movie is very obviously incredibly slanted.

Because here we have a picture of a girl crying being used to prove that people like this girl should not exist. We basically have someone's emotions being used to devalue her. And to me, it's very obvious how emotions mean completely different things depending on the privilege or the role of the person showing emotion.

If you see the family member of someone who's identified as "the disabled person" expressing emotion--crying, screaming, expressing that they want to kill themselves or kill someone else, seeming very annoyed about something pretty small like not being able to go out to lunch--this is taken of evidence of how wronged the person is by the disability that "the disabled person" has (which, I'm sorry, is not that different from saying they are wronged by "the disabled person," straight up).

For the record, I should say that I don't have any problem with the one mother in Autism Every Day complaining that she can't go out to lunch--I don't think she's being petty or something, I think it's something that represents, to her, how much pressure she's under. What I do have a problem with is that if "the disabled person" complained about something small like not being able to go out to lunch, it would probably be used to show that "the disabled person" is unreasonable. And definitely in the cases of crying, screaming, and verbally or physically showing an interest in violence against oneself or others, "the disabled person" cannot do these things without showing how undesirable their disability is, or how unbearable they are.

So if you have privilege, when you show emotion that causes discomfort in someone else, it just shows that your life sucks, and turns the viewer's discomfort toward the cause that you want to promote. If you don't have privilege, and you show the same emotion, the viewer's discomfort stays with you and is turned back towards you. I made this swell picture at artpad showing how to respond when a family member of "the disabled person" is upset to a degree that makes you uncomfortable, vs. how you should respond if "the disabled person" herself is upset.



This is sure to turn out really well for everyone except the disabled person.

Someone in my family who I'm very close with has a mental health condition and I know they don't want people to know about it. But it is also very hard for me not to write about it, because in retrospect I can really see how it fits into "the disabled person" vs. family member in terms of expression of emotion. (I'm talking about this in the past tense, somewhat disingenuously, but whatever.)

I was seen as "the disabled person," while this other person wasn't. And it only became apparent to me fairly recently that I, and another family member, who regularly experienced this person screaming and crying at us, didn't just deserve this because of the way we were.

I wasn't nice always. Sometimes I felt threatened and would hit or shove the person to get them out of my space. If we were having a conflict, I would sometimes get really upset and say things that I knew were hurtful. Sometimes I was sad about things that were going on, and I cried, which caused the person to be upset.

However, I've eventually come to realize the incredible amount of room this person had compared to the amount of room I had. The person could say all kinds of small hurtful things and it wasn't considered wrong for them to do that. If I said anything back, even if I tried to be really diplomatic, what happened next was my fault. If the person cried, it was because I was hurting them. If I cried, I was hurting them by crying. If someone apologized, it was usually me. If someone tried to calm someone else down, it was usually me.

I know, now, that this person can't help being very emotional and sad sometimes, and that what happens is no one's fault. But the person never really sat me down and said, "I have depression. Sometimes things will be scary. It's not your fault." Instead they allowed everything to go into this frame, where the people they cried and yelled at had brought on this reaction by not having certain abilities. This is the only thing I resent them for, not the actual crying.

Sometimes I think that my whole interest in anti-ableism just comes out of growing up this way.

But the reason I wanted to write this in the first place is because I have this really good friend. Let's call him K. It feels like every few times I hang out with K, I end up not only crying really hard and talking about every sad thing I can think of, but I actually say mean things to K and accuse him of not caring about me. K gets upset by this, of course, and wonders if he's a bad friend. I feel bad because I'm putting the huge emotional burden of these conversations on him--but I can't seem to stop.

Today, I started trying to write K an email apologizing and telling him that he really isn't a bad friend at all. Then I started trying to explain why I treat him this way, if I don't think he's a bad friend. I ended up realizing that the reason I get so angry and difficult is that I know nothing bad will happen; K won't be mad at me long-term, he won't stop being friends with me, he won't hate me. When I'm with him, I have a safe place to get upset.

Obviously this is a problem, since I don't want to punish people for making me feel safe. But it made me think about how anger and sadness can kind of be a privilege. We think of crying really hard as being an undesirable experience. But really, the ability to cry really hard and not have it be used against you means that you have power. You have so much control if even losing control doesn't matter.

oh yeah so part two--on being vicious about yourself

So my former professor and advisor, Phyllis, has ADHD or something like that. She was a very nice person to have a professor partly because she would always do things like losing her coat when we moved to a different classroom, scheduling meetings and forgetting to keep them, sending emails saying "here's your assignment" but forgetting to include the attachment.

I feel so lucky to have met her because at the same time I was in her class, I was in another class with a professor who hated my guts. These are some explanations he gave to me and other students in the class:

I was "really weird"
I didn't use body language that made me look interested in class
I forgot to turn in a paper once (I had done it and brought it to class; I literally forgot to turn it in)
I was late to the first class because I misremembered when it started
I talked as if I hadn't done the reading (for the record I don't talk about reading I haven't done; I'm not...there I go again)

I would have ended up feeling like I deserved all this just because I had on two occasions forgotten to do things--not because I didn't care about class but simply because my working memory is super poor. But Phyllis's class was a place where I could feel safe. Phyllis cared a ton about her subject and her students, but she forgot to do things. Her class was a place where it was understood that a person can work hard and care, but sometimes not be able to do what's expected.

She is the only professor I've ever become friends with and I still see her sometimes even though she's retired.

Anyway, the last time I saw her she told me out of the blue, "One time you wrote me an email that said, 'I'm so stupid, I forgot to do this.' And I thought that was wonderful! It was so freeing! Now I started saying, 'I'm so stupid.'"

I was really interested that Phyllis said this because usually I feel under a lot of pressure from non-disabled people to avoid saying things like, "Sorry," and "I'm stupid." Like, I guess that people think they're being nice, but it just feels like they're trying to silence you. For someone like me who feels really required to check that I'm doing things properly, if someone just tells me something like what my boss told me this summer--"The only problem with you is that you keep thinking you're doing something wrong and it makes me sad!"--that makes me feel like the person would rather I handle any anxiety or guilt completely on my own, which makes it much worse, rather than making it visible to them by asking them if I'm doing something wrong or apologizing for real or perceived mistakes.

Autism is a world and you're not invited

(This was going to be my Autistics Speaking Day post but then I accidentally wrote something else. So this is like my pre-game.)

Now, I have a tendency to say things about other disabled people, like, "Well he can't see, but it's not such a big deal to him, he knows how to get around" or, "Well she can't walk anymore--so she's using a wheelchair now." I end up interjecting this tone of forced mellow when I hear other people saying things like, "Oh it's so sad she can't walk..." or, "Oh and he's *blind*...."

Sometimes people say that I am being insensitive and implying that just because someone has a way of getting by, they don't have a hard time because they're disabled. The reason I end up saying forced mellow things, though, is because I feel like saying, "Oh it's so sad..." or, "Oh I'm so sorry..." is really invasive. It's their thing to feel sad about, not yours. Glossing over the hard parts of disability, if that's what I'm doing, is not really any more biased than emitting massive rays of sadness in the direction of someone else's experience.

Especially if you have a lifelong disability, like I do, massive rays of sadness can really creep you out. When explaining I am disabled I find myself wanting to say something like, "I have autism, it's pretty boring. It's not a big deal." However, if I said that I guess it would have to be followed by a qualifier: "I mean, it's a big deal for me, but not for you."

I really don't like when people make a big deal out of the way I move, react, and speak (form and content). I used to think that I should be working harder to act and communicate in a way that people wouldn't have anything to say about. The thing is though that I already try to be polite and pay attention, and I feel like that should be enough--I don't know how many years it would take to blend in completely, if it even happens at all, and I don't know what the emotional effect on me would be. So I prefer to be like, "Hey, can you just chill out about the way I talk, I have autism. Thanks."

The problem is that my disability comes in two parts: the part that most people can see, and the part that I actually have to live with. I don't really think the way I talk is a big deal. However, I'm pretty affected by central coherence/transition problems and anxiety, and those things are a huge deal and often kind of a scary thing.

It is my choice not to try to get school or work accommodations, even though all my issues could be fairly easily accommodated. Because these kinds of brain problems are hard to quantify, I'm extremely leery of explaining them to people who might think I'm being dishonest. At school, the kind of tasks you're required to perform in order to get accommodations are things I'm often not mentally or emotionally capable of doing; so the process of getting accommodations would be harder than doing without them. I would never ask for accommodations at a job out of fear of being seen as incompetent (given the chance, I try to avoid them knowing I even have a disability diagnosis).

Actually now that I said all that I'm not sure "choice" is the right word to use, but I guess the point is that, for me at this juncture, the bad/internal parts of my disability are things that I very much keep to myself as much as possible. "Myself" is not just me though, it is also some of my friends who either have disabilities or just are awesome, who I'm able to talk to and get help from regarding the brain stuff. They are people who can come inside my disability with me, and it's nice to have their company.

But you can stay out there, please. I'm fine. I mean, I'm actually not fine as in "looks different but is able to do the same things as anyone else." I can't do some things and sometimes I feel super bad about it. But no matter how bad it gets it is never an occasion for some other person to feel bad about my disability in some existential, abstract way. I would really rather someone just be cheery about it--"okay you have autism, that's cool, just like some people have blue eyes"--than try to insert themselves into my disability with me when I didn't invite them.

I refuse to feel bad

As Pete Campbell once said, "I refuse to feel bad." What an awesome thing to say! I love Pete Campbell! However, I guess he kind of should have felt bad, right, in that specific situation. Right? I still don't know what we were supposed to think.

The act of refusing to feel bad is very powerful. Especially for me.

I think this is partly the case because I sometimes feel bad about things that other people don't feel bad about, and vice versa. So forcing myself to feel bad because I know that someone else feels bad, combined with a reluctance to express that I feel bad, becomes a way of denying my own experience.

It is also the case that I grew up with someone who, to put it mildly, had a lot of feelings. By the time I officially decided this wasn't my fault, I was old enough to vote and almost old enough to buy alcohol. Obviously I cry, and sometimes people I love cry and my reaction isn't defensiveness. However, there is a certain type of angry crying which I've now come to see as a weapon, and when someone starts angry-crying at me, it makes me want to disengage as fast as I can from what is going on.

This is very mixed up in politics with me because I think a lot of opposition to disability rights/anti-ableism is expressed in the form of angry crying, or something that looks pretty similar. "Shut up! Disability is so horrible! It doesn't matter if you're disabled and I'm not, you should listen to me because I'm crying!" (Sorry to be such a bitch, but admit it: you know what I mean.)

Refusing to feel bad can go hand in hand with trying to feel good. An example of this is meeting someone with a quote unquote "significant" disability and actually getting to know them and see how they feel about things. Getting to know someone is a lot of fun and I would absolutely recommend it every time over reading a parent or professional's negative description of what a disability is like. Even in cases where the person is in tremendous pain, their life will still be more complicated than "this disability is bad and you should feel bad."

The problem though is that it's not that easy for me to say, "Well, I don't feel bad about disability (mine or someone else's), and if someone else thinks I should, then fuck them," because, you know, some people who think I should are people in my quote unquote real life, like family members and friends. And since I've started refusing to feel bad (a condition which developed between the ages of twenty and twenty-one-and-a-half, more or less), I have made people angry-cry by telling them that I think they're being offensive and that they're hurting my feelings (often about disability stuff, but sometimes about other stuff).

At this point, I sort of start to get bogged down, because I know that writing this blog is kind of a special interest. Even though some stuff that I write here is about my and other people's experiences, in a straightforward way, lots of other posts just consist of me poring over pop culture or really tiny inconsistencies in language and identity preferences and blah blah blah. And I haven't always been into this stuff.

So I mean--should I be able to separate the part of me that wants to say these things from the part of me that is close with those people? It's weird because I haven't always wanted to say these things, or felt able to say them, and also because if I have a history with someone that involves fuckups on both our parts (more mine, for sure, with some of the people in question) it's not a situation where I can just be like "oh they suck, they're just refusing to acknowledge their privilege. This is boring, I give up." They don't suck--they're a real person.

Maybe I suck.

Maybe I'm just being an asshole and this is just like getting in a fight with someone and making them cry because they don't like a TV show that I really like. Is it like that? I don't think it is. At the same time, when it comes down to it I often don't refuse to feel bad. I often feel really bad. But intellectually, I still don't think I was wrong, but I feel like I would be a bad person if I didn't pretend to think I was wrong so the other person wouldn't be upset anymore.

And so on and such forth.

Max is a miracle

I have an imaginary friend named Max. He resembles me and some of my friends, but not as much as I would like. When Max was growing up there was concern because he was incredibly disorganized and spacey. He spent hours on the Internet. He zoned out when people were talking to him. He got confused about coming up with plans and taking initiative.

But look at Max now! He goes to college and gets good grades. Or he's done with college and has a pretty good full-time job. He lives on his own. He does all these things that his parents and teachers thought he would never be able to do. And it's not because he's "recovered," because he still sucks at all the same things.

I know that when I say Max does things that are really hard for him, it sounds like I'm creating a supercrip narrative about how he is just wearing himself down to the bone doing difficult things, and you should too. And some people who know Max do talk about him that way.

But Max has a secret: he skips to the end or slides into home plate at the last minute or wrangles things out of people so that he can get stuff done despite having no executive function to speak of.

The mainstream reaction to this would be to say that Max is a bad person and if he was a good person he would try harder to get things done on time. However, he tries really fucking hard. That's what everyone with executive function problems does, because no one accommodates them because there's been very little study of them so most people don't realize they're even a part of autism, and it's hard enough to get accommodated for things everyone knows about. Seriously. No one wants to be at a point where executive dysfunction is affecting their life. Max, and I, and everyone, are working as hard as we can. It's not enough.

You have to cheat. Ask for as many extensions on papers as you possibly can. Pretend your computer is broken. Use your charm if you have any. If you're going to cry, don't wait until you're out of the room--do it where the people in power can see you. Eat the same food every day if you can't think of anything else to make. Put other things ahead of taking a shower, even if your mom said you have to take a shower every two days. Sometimes people won't notice you're cheating but even if they do and are annoyed you might still get by.

My mom goes to workshops for people with ASD and then gives me the really long printouts that go along with them. The printouts tell me to sit down and make a list of everything I have to do. When I am anxious, as I have been this year, it's hard to think about these things so I hold on to the printouts out of guilt but don't actually read them. Then my mom finds them and gets upset that I haven't read them and says that I'm not ready to live on my own.

But I am ready to live on my own. Badly. Just like I can hold down a full-time job. Badly. Just like I am getting my homework done. Badly. And I forget to balance my checkbook, which none of my non-disabled friends do because you can get it online, and my mom says, "Well it's different for you because they would be able to do it if they needed to, but you wouldn't, so you have to do it." Theoretically I understand this is true, but my checkbook remains unbalanced.

Which is bad. And I feel bad. I do! At this rate I'll never be able to go to college. But I do go to college. At this rate I'll never be able to have any friends. But I do have friends. I just don't do everything right with them all the time.

This blog is a vice. It is something I have used in the past to avoid doing work or looking after myself. Sometimes trying to force myself to do work or look after myself makes me anxious or upset. So I've also been using this blog to avoid self-injury, in a roundabout way. I'm Somewhere Else is a bad, bad business. However, when I forget its context I feel kind of proud. To someone who doesn't know me, maybe it seems like an accomplishment.

For people whose lives are controlled by executive dysfunction, I firmly believe the difference between getting stuff done and not getting stuff done is not caring about doing things right. You cannot always make a list all the time and be early for everything. You just can't. Hopefully you're good-looking or funny or you remind someone of their niece. Exploit all opportunities. Do not do what people who are not disabled tell you to do (unless you want to, of course).

All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you.

who does sadness belong to?

I was just rereading the transcript of the May 30 IACC meeting and I came across a particular saying that Francis Collins used in his not-especially-sensitive comments.

"A parent is never happier than your saddest child."

Now, what does this mean? Is autism the same as sadness?

And if Autistic children are sad, does their sadness belong to their parents instead of to them?

Collins, who amused me by saying, "I know this is a tough time for anybody, any family, any individual who is going through the experience of raising a child with autism spectrum disorder" (bending over backwards to include all family structures, but forgetting that actual disabled people might be having a tough time), probably does think that. What does it mean if you don't even have the rights to your own sadness?

A few months ago I was consumed by the idea that my parents would have aborted me if they had known I would have ASD. Despite knowing it would lead to a lot of drama, I couldn't help but ask my mom if this was the case. She said that she wouldn't choose not to have me now that she knows me, but that if she hadn't known me but had known "how sad you would be," she might have had doubts about bringing me into the world.

The thing is I don't think of myself as a sad person. Obviously there have been occasions when I've been really sad, but I'm a pretty dissociative person (which is scary, but I guess it happens because I need it) and I also tend to produce a lot and be very spiritual when things are going badly. I'm not saying I enjoy being sad but I just don't think of it as being a big part of my life; it doesn't happen that much and when it does I focus more on the byproducts.

The worst thing about times when my life is going badly is that my mom won't stop talking about it and basically criticizing me for wanting to do other things than emote about how bad things are. I feel like she doesn't understand that if I did constantly do that, my life would be terrible. I couldn't think that way, so I don't. The way things are, I'm more guilty about how sad she is about my "sadness" than I am actually sad myself.

It becomes an affront to her that I am not worried and sad in the way she thinks I am or should be. It also becomes insensitive for me to be uncomfortable with the idea that I maybe shouldn't have existed because of my sadness--it's insensitive to her, because my sadness doesn't belong to me, it belongs to her.

It kind of reminds me how fans of Jerry Lewis and his telethon will accuse his opponents of being "bitter" or "hateful" when in fact the opponents are the ones being positive, and the telethon is negative. Even though Jerry Lewis doesn't have muscular dystrophy, he has ownership of it and gets to decide how it feels. If people with MD don't consider their lives to be tragic, then they're taking away something that belongs to Jerry Lewis. Somehow, they're the ones being mean.

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.

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.