tl;dr

I know this isn't an interesting post, it's probably my 100th post on the subject. I try to avoid even reading about this stuff because no one cares. But I quit tumblr, so sometimes I have to say boring emotional stuff on my regular blog.

1. It's so dumb to think that listening to PWD aside from your own kid means that you have to obey and agree with everything they say! PWD don't even all have the same life experiences or opinions. Why don't you just treat people with disabilities like people with disabilities who might have something to say that is important and, even if they don't, don't deserve to be personally attacked?

"But I didn't personally attack anyone!"

Oh yeah, I've heard that before...too bad Ability Statements Are a Personal Attack! There's no way you would be into it if I started making assumptions about your kid or your life so why do you think disabled people should be all calm about you doing the same to us?

No disabled person wants a bunch of parents following them around and obsessing over their lives and worshipping them. Well some people do, but they're famous and they try not to talk politics because it might distract from the worship. You're not talking to those people, you're talking mostly to some really young/not-famous people with disabilities who don't want to profit from our disabilities but just want to be able to talk about them. We don't want you to agree with everything we say, we just want you to stop being disrespectful and acting like we're not even here.

This is especially annoying when used as an origin story, like, "I used to believe everything that disabled people on the Internet said, until someone told me that one person wasn't diagnosed with the disability they said they were diagnosed with, so now I don't believe ANY disabled people on the Internet." If you legit were believing everything all disabled people said AND prioritizing what they said over your own common sense and experience with your kid--instead of just listening to them like you would listen to any normal person, and thinking about what they said critically--well, why were you doing that? Why do we have to be always right or always wrong?

We're just OTHER PEOPLE, like you.

2. If I see the word high-functioning used one more time by someone who is claiming to be evenhanded...okay I'll probably have the same reaction as usual. Super big sigh, bad mood, usually avoiding a conversation with that person. That word just feels like they are stepping on other people and not even noticing or seeing why it's important.

3. It's not that weird that people from a certain minority group involved in advocacy would not be representative of everyone in their group. I remember someone (non-disabled obviously) making a comparison between gay advocates and Autistic advocates, and hastening to add, "except, the difference is not all Autistic people can do this kind of advocacy."

Yeah, okay, what about gay people who don't have the money or the mobility or the cognitive or emotional ability to participate in a certain kind of advocacy? Since we're always on the subject, what about gay people who have multiple severe disabilities? What about gay people who smear feces?

I would like to see mainstream gay advocates acknowledging gay disabled people more, obviously, but what I'm saying is I don't think you automatically have the right to discredit advocates just because they aren't a perfect microcosm of the community they are supporting. For example, people who can use the Internet independently, and read and type fluently, are more likely to be involved in blogging or having conversations on blogs. People who can use the Internet independently were more likely to find out about The Loud Hands Project and submit clips of themselves for the video. (According to one guy we all dress like "hipsters," and therefore don't have real autism. I'm still trying to figure out what people with real autism dress like? Probably guayabera shirts.)

I think it sucks that many kinds of anti-ableist advocacy aren't accessible to a lot of disabled people and I would like to change that. (I know that one of the goals of The Loud Hands Project is to do exactly that.) But I don't think, given the current lack of support, there is anything surprising when most disabled people who have anti-ableism blogs or attend meetings of disability rights organizations have certain abilities that make it easier (or at least possible) for them to do those things without support. It also doesn't mean they aren't severely affected in other areas, but no one cares about that, blogging is ~the most important thing in the world, ever.

4. Finally, just stop saying high-functioning! Again! It makes it impossible to talk to you because my head is going to DROWN in how annoying you are.

Especially if your kid is also "high-functioning" or could be classified that way, but for some reason you're neglecting to mention that. Maybe because you secretly sense what a shitty word that is to describe someone who's having a really difficult time! Or, maybe because you don't want to lose points in the argument. Possibly both! No one knows.

Like I said, this is probably the 100th post I've written on this subject and I swear to God, I don't think a single parent has ever read something like this and changed their mind and realized they were treating other people badly. Seriously. 100 posts. All bouncing straight back into my own mind.

If you have known me for a while, you probably remember my 2010 campaign to acquire a severe developmental disability by throwing myself in front of a FedEx truck before my 22nd birthday. Since I've missed the legal cutoff I would now have to throw myself a bit harder, or drink Drano, to get out the high-functioning deal. I know you think this is really insensitive and insulting to you and your kid, but try and think about WHY I would feel like that is a smart or reasonable thing to do. Because I really, really did feel that way.

A friend of mine recently described himself as "too disabled to work, not disabled enough to get disability benefits." If you think that kind of life situation is best described as "functioning," then you are a shit. Seriously. When I look at you, I don't see a person. I see a turd.

Of course I know you don't see anything when you look at me either!

3. Real Life Facts

(Three)

This is just sort of a combination of part two. But I want to tell you some things you might not know (I guess).

In college, a person with a disability needs documentation in order to get accommodations. Even if the person comes in with severe CP and is like, "I need a notetaker," they still need a professional to have signed off on the fact that they can't take notes.

Usually the documentation has to be from the past three years, in case someone who has dyslexia might have stopped having dyslexia and lied about it just to be an asshole.

A lot of the time, if you are supposed to get an accommodation on tests, you have to get signatures allowing you to do this every time you have a test. Not everyone really has the brains to get signatures every time, but oh well. Not everyone has the brains to go and talk to a professor about their accommodations on the first day of class, which is also something you're supposed to do. But PWD don't get any support in doing that stuff.

If you don't mind me saying, this strikes me as a situation where people with disabilities are assumed to be con artists who are just trying to get sweet deals like enlarged handouts in class or their own special room to take a test in because they think they're too awesome to be in the same room as other people. It seems like PWD basically are supposed to get punished for being disabled and thinking that it might be their right to have school be as accessible to them as it is to everyone else.

I don't have experience with this, but my impression is that a lot of this stuff also happens when a person is on (or trying to get on) Medicaid or SSDI, or when a person is on disability leave from a job. They are assumed to be lying. Pretty much anything will prove it. I remember reading about a woman who was fired because she appeared smiling in a picture on Facebook, while she was on leave for depression. I think we have all seen people (including politicians) Tweet about how anyone who gets any kind of disability benefits, and also socializes on the Internet or in a bar, must not be really disabled. Doing anything fun or political or emotionally important to you means you are not disabled. If you can get yourself together to go to a bar for one hour, you clearly can get yourself together to work full-time. Even if you were in bed for 20 hours that day?

I saw a person Tweet during the TPGA dialogues about how self-identified disabled people writing TPGA posts and participating in comments could not possibly be struggling that much, which brings me around to what I was saying. These snap judgments of ability (and automatic attempt to discredit people who claim to be disabled) are exactly like real-life snap judgments that can have a significant effect on a disabled person's REAL LIFE.

So when you say, "You obviously can live on your own,"

and the person actually can't, and it is really scary because she can't live with her parents anymore, but she also knows that most people would assume she can live on her own and she won't be able to qualify for any kind of help, or even ask people she knows for help because they won't believe that she actually needs help,

her response to you is likely to be:


(Realistic Haunter.)

2. Unevenness and inexplicability

(Two)

One of the reasons I don't write primarily about my disability (if you were wondering), and also a reason I am balls at self-advocacy, is because I'm a person with--DUN DUN DUN!--uneven skills.

I actually don't believe in uneven skills! It's a social construct and this is obvious in the fact that--while people sometimes make practical blunders like assuming someone with a physical disability has a mental disability, or talking to someone who is blind the way you might talk to someone who is hard of hearing--most people would admit if they were asked that there is no logical reason someone who is blind must also be deaf, or someone who is physically disabled must also be mentally disabled. And no one feels the need to say someone has "uneven skills" because they can hear but not see.

But within categories of disability, especially the mental disability category, there's this expectation of evenness. If someone's abilities aren't exactly at the same "level," whatever that means, they're possibly an amazing curiosity, but probs lying.

A person can write but not talk? A person scores high on IQ tests but can't do well in school? A person does well in school but can't figure out how to go grocery shopping or make a meal? A person can cook but not clean? A person can make some kinds of phone calls but not others?

No way guys, all these people are just liars! Check it out, this person claims she can't talk, but I found a video of her SINGING! Oh hey, you said you can't make phone calls, but I know that you made a phone call one time. Caught in the act!

As a person who can't make certain kinds of phone calls, like phone calls to follow up on jobs for example, I would never be stupid enough to tell anyone this. When someone tries to give me advice on finding a job and the advice includes phone calls, I just stop listening to what they're saying and start smiling really big to show them that they're helping me LOTS.

"Why can't you make those phone calls?"

"I don't know."

"How can you not know?"

"I don't know? I just don't? I guess probably you could locate it in something about phone calls feeling insincere, and worrying about bothering people, and not knowing what I would say in the phone call, all of which are kind of horrible things, multiplied by like a hundred because I applied for a hundred jobs so there isn't even an end in sight."

"Oh so you could make one phone call."

"I mean, theoretically, probably? I'd sort of deal with it all day. I'd write myself a letter about it. Maybe someone could sit with me. But it isn't one phone call, it's a hundred phone calls."

"Why can't you make a hundred phone calls if you can make one?"

"Because it would take a hundred days."

"So you can make phone calls!"

"You're totally right, if I took a hundred days and used them to only make phone calls and felt calm about everything else. I could probably do it in less than a hundred days if I had my own personal phone call aide to support me in all the phone call problems and keep me from running away from the phone. Maybe I could even do it in a few days, with a phone call aide. You win. Great job. Are you going to hire one?"

"No, that's stupid."

"I know, so why did we have this conversation?"

No one knows!

One time my dad tried to have a conversation with me because I said something about it taking me a lot longer to do certain things than it took other people. He kept asking me why. I was like, "I don't know, but towards the end of college I started having to pull one or two all-nighters every week, because I could only get work done if I had that much time to do it in." My dad kept asking me why I didn't do things like "sleep for a few hours, and then wake up and work." I was like, "I don't know, because I know that wouldn't make any sense for the problems the all-nighters were supposed to correct?"

We had started having this conversation because I didn't think I could write letters that night if I also wanted to go to bed at a normal time. My dad said, "What about you bring your letters downstairs and I sit with you and make sure you write them right now?" This sounds nice, but I already knew what kind of conversation it was! For some reason I agreed anyway just to see what happened.

When I went upstairs, I said, "If I don't come downstairs in ten minutes, will you remind me to come downstairs?"

My dad was basically like, haha! Caught in the act!

Because--you saw this coming if you have "uneven skills"--the fact that I asked my dad to remind me to come downstairs showed that I actually was just lazy and didn't want to take responsibility for my own actions. Asking for this was the final straw that pushed him over into thinking that the whole problem I was describing (which he'd obviously made it clear he had his doubts about) was too ridiculous to be true.

I don't know if it seems weird that my dad wouldn't believe I was telling the truth, since I have been diagnosed with some disability or other since I was a little kid. In my family, whether I'm disabled is not a controversy. But when I try to tell my parents a fact about my disability, it is always assumed to be not true.

Uneven skills can also be called inexplicable impairments and they are basically anything someone thinks is ridiculous or impossible. I guess you might be wondering why I am just writing about myself, when I am supposed to be writing about Internet arguments. The reason is that, first of all, random Internet judgments of someone's ability tend to be made out of the same mindset that assumes someone is lying because their disability seems too "uneven" or unlikely.

Someone with a developmental disability is typing? Someone with a developmental disability is writing a blog? I saw on their Facebook that they're in college! My bullshit detector is going off--this combination of facts is simply too ridiculous to be true.

So first of all these judgments often come from the fact that most people have a poor understanding of uneven abilities (especially when those abilities are stated by a disabled person and not a parent or best of all a professional). But second of all, it's because so many disabled people are really used to having people (at best) smirkingly accept our stated impairments, if not outright challenge them, that it is so upsetting and frustrating to have some random person on the Internet imply we are not disabled because we have a blog. At least my parents tell me to my face that they think I'm trying to get away with something.

1. Irrelevance

(One)

Ability statements are somewhat related to the tradition of the self-narrating zoo exhibit, and I'll explain why. First of all, I think people tend to get told their disability is mild (or something else, but whatever the words are they usually imply it's not a real disability) when they haven't gone into a lot of detail about their disability and how it affects them.

The thing is though that there's no correlation between how much you talk about your disability and whether your disability is real or not. So why do people imagine there is? I think it has to do with the expectation that disabled people who talk about disability will always be talking about their own disability. A writer who self-identifies as disabled, but isn't describing her own disability, produces writing that is inconsistent with what's expected from a disabled writer. Maybe this is why the legitimacy of her disabledness gets called into question.

I think some people who have made ability statements would argue that they weren't telling the disabled person her disability wasn't "real." They were just arguing that as a talking person, the disabled person doesn't understand the experience of people who can't talk (or whatever the ability in question is). But in the context in which ability statements appear, they almost always are jarring in the extent to which they don't follow naturally from the conversation.

"I am disabled, and I think--"

"You can talk."

"I know I can talk, but anyway I'm disabled, and I think--"

"You're less disabled than someone else."

"I know I'm less disabled than someone else, but I was just saying--"

"You can attend college."

"Actually I had to drop out of college for reasons related to my disability, but anyway, I had something to say, and this is kind of offensive."

"Why are you denying that there's a difference between you and people with severe disabilities?"

As a queer person, I can make this comparison, I think: someone who's talking about something "as a queer person" doesn't usually have a lot of straight people clamoring to tell him that he's bisexual rather than gay, or that he's "straight-acting," or that he came out late in life.

Queer is a pretty broad word and so is disabled. If someone is talking about disability as a broader category than some really specific thing like not being able to talk at all, then I don't really see the motivation for needing to pin down a lot of specific facts and--it often seems--put the disabled person in her place by highlighting ways in which she is "less disabled" than someone else.

I don't think it is surprising how much it happens, because the way disabled people are treated is often all about putting them in their place for wielding the term "disability" themselves instead of letting someone else have it (and that has to do with the next thing I'm going to say). But when it happens it is really offensive because it takes a conversation that was often more abstract or general and steers it into being about the details of the disabled person's life.

Ability statements are a personal attack because they are dehumanizing. By throwing them out there when they are irrelevant, you indicate that a disabled person doesn't have the right to just express ideas and feelings like you do. She must be on display.

Ability Statements Are a Personal Attack.

I just figured someone should post a to-the-point explanation of why this is the case. I think some people, especially people without disabilities, will say something that they think is pretty innocuous, like, "You obviously can live on your own." But then they check back on the comment thread and the person they said that to looks like this:


(Realistic Haunter.)

How come?

1. Irrelevance
2. Unevenness and inexplicability
3. Real Life Facts

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."

why is arguing with you the only self-advocacy that counts?

I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.

I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.

The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.

First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.

But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.

I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.

Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.

Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.

Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:

*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments

All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?

Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.

So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.

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.)

the difference between Asperger's and autism

from my disability page here

Hi, I was just wondering why you keep using words like "ASD" and "autism spectrum disorder" and "autism" and "Autistic" about yourself when it's pretty clear that you have Asperger's and not autism at all.

Well, that is a good question. Can it be "pretty clear" that someone has Asperger's and not autism? What is Asperger's anyway? What's the difference?

I don't think there is a difference. This isn't to say that everyone with ASD is the same, or that I'm denying the privilege I get from being a person with a relatively mild disability, when some people with ASD are quite severely disabled. But I do think there aren't two distinct types of people with ASD called "people with autism" and "people with Asperger's."

You might be interested to know that there is even another ASD diagnosis besides those two. It's called PDD-NOS and when doctors give it to people they mean "this person has ASD that's milder than Asperger's" or "this person has ASD that's more severe than Asperger's but milder than autism" or "this person has autism but I don't want their parents to flip out so I'm going to give them a diagnosis they've never heard of" or "this person has the traits of Asperger's but they have an intellectual disability or they had a speech delay which people with Asperger's aren't technically supposed to have" or a billion other things. There is also a diagnosis called Nonverbal Learning Disorder, which is something that doctors diagnose people with even though it's pretty much exactly like mild ASD, and some people think that only happens because there is a lot of stigma attached to ASD so doctors don't want to diagnose it.

This is pretty boring to read, but just imagine how much more boring it is to go around with for example a PDD-NOS or an NVLD diagnosis and have people going, "but do you have autism or Asperger's??" And no the solution is not to get rid of the PDD-NOS and NVLD diagnoses and stick to autism and Asperger's, because those are hard to separate too. For example, some imaginary people I made up for you so you can do a diagnosis braintwister:

A. ASD person who is pretty good socially and has good self-care skills, but is nonverbal
B. ASD person who seems very verbal when they are assessed by a doctor, but can't talk when they are stressed, speaks in a very disorganized fashion, and has trouble pronouncing words in a way that other people can understand
C. Person who is quite impaired by their sensory issues, to the extent that in loud places they are perceived as someone with a severe developmental disability--who is actually extremely verbal and has normal intelligence
D. Person who has mild ASD that only affects them a little, in terms of being disorganized and a bit socially inept, but has an intellectual disability that keeps them from being able to read or write very well
E. Person who as a young child was nonverbal and seemed severely affected in other ways, but became verbal as they got older and has worked really hard to learn to do a lot of things, and now doesn't "look disabled" to the average person
F. I could make up some more examples but I am again becoming bored so I will just tell you about a cool exchange I had with someone once:

Me: My friend has cerebral palsy.
Other person: Oh, how does it affect him?

The reason I thought this was cool is because I think it's often not useful to talk about disabilities in terms of "mild," "moderate," and "severe." I mean, sometimes it's necessary to use those terms as shortcuts I guess, but when you're talking about an individual I think it makes more sense to say whether they can walk, whether they can talk, and if so what is the way they walk and talk like? What is hard for them? What is something that they've learned to do on a regular basis, but it still kind of tires them out? What are they good at? What do they like to do? Do some things make them upset that wouldn't make a non-disabled person upset? Can other people tell they're disabled? How does the disabled person feel if other people can tell? How do they feel if other people can't tell? Do they ever take steps to try to keep people from "reading" them as disabled? What is their social life like? How are they at academic stuff? How are they at handling transitions? Are they clumsy? Do they make noises sometimes? Do they want to be in a relationship and if so how's that going for them? Do they live on their own? Can they eat lots of different foods and can they tell time?

I just think that, although the terms ASD and autism may seem overly broad to you, it is much better to use a broad term and then fill in the specifics than it is to act like autism exists in two distinct types, especially when there are so many stereotypes associated with each type. I'd rather someone just find out what I am like by knowing me instead of demanding that I tell them my diagnosis or my level of "functioning" or whether I am "mild."

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.

so I made the best Privilege Denying Dude ever and only FOUR PEOPLE on the Internet liked it. And one of them was my friend who saw me complaining on Facebook about how no one liked it.

I'm seriously sad.

I have to stop

I just get really angry sometimes. And it's about all the same old stuff.

But I just can't handle the high-functioning/low-functioning thing, not now, not ever. And I don't really have to, often, because this is a pretty small blog and most of the people I am in contact with as a result are people with autism-ish disabilities, or people who get it. But sometimes I end up reading comments from people like Harold Doherty and I just...I can't do it. It just is too much.

Partly this is because--I mean, if you read my stuff you know that sometimes I have thought a lot about killing myself or hurting myself. Sometimes I've had to sort of disappear from myself because things are so hard. I have a lot of brain problems. And right now I get the privilege of being close with a lot of people, but this feels like a privilege because I used to be very much alone. But the social stuff is the least of it. Cognitively, and emotionally, a lot of things are unbearable sometimes.

And I just seriously can't handle these characterizations of "the kind of people with autism who don't want a cure" as being a person who isn't really affected and thinks everything is great. People who say those things don't live my life. Usually, they don't live any kind of disabled life. They don't understand that a person can be very taxed and still usually want to live. They don't understand that a person can want to die, but still think that a cure isn't the only solution to feeling that way.

I hate having to always pull this out, because really anyone should assume that people who are involved in anti-ableism know people with severe disabilities--but I know people with severe disabilities, mostly through being staff for them and volunteering with them (which is a weakness, I'd like to get to know more severely disabled people through self-advocacy and in my everyday life). And...it's not any different, when it comes down to life. They're not tragic people. Most people have the equivalent of what I was talking about the other day, when I was talking about wanting to die. People have things that move them through life, things that are special to them.

Some people with severe disabilities, like people with mild and moderate and whatever you want to call it disabilities, are very lonely and very sad and are not getting the help they need. This is a tragedy. But we, disabled people, are still not the tragedy.

I really can't handle, with how much stuff hurts sometimes, seeing people like me characterized as not really having any problems and not really being affected by disability. Things are really bad and people who are invested in the tragedy model of disability will never be empathetic enough to understand how bad things are, because I don't consider myself a tragedy and therefore I must not be suffering ever.

One problem with this whole way of thinking, this division, is that it makes all my suffering and all my hard work meaningless. These people think that if you do something that people with autism aren't supposed to be able to do, then it's just because you don't really have autism. This is one of the attitudes that most makes me want to kill myself, because I know that even if I work really hard and accomplish a lot, no one will respect me for this because they will just see me reaching a level that a person without autism could reach, and refuse to believe that I'm not just a normal (or normal enough) person operating at my base level. Sometimes it feels like there's no motivation for me to do anything.

The last problem is just that one of the people that Doherty et. al. most like to use as an example of someone who has a really easy time is one of my best friends and is the only thing that keeps me going sometimes. I know that my friend is not a person who is unaffected by disability. He is probably the epitome of someone who is working way beyond their means, and he pays for this all the time. I love and respect him for doing this to himself, and I feel that even if someone doesn't agree with his work, they should respect him for how hard he works to do it.

But they don't, they don't, they don't, and that breaks my heart (because I'm easy, I guess, kind of soft), and it just makes me, more than anything, sad to read what these people have to say. It gives me a sense of being erased and thrown away, of being completely nothing. I really don't know what they want from us--if we all just laid down and died, would they believe that we're really disabled, or would they just change their definition of what disability is?

how an autism spectrum disability affects my life now

[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.
FUCK YEAH SEAKING IT'S PROCESSING
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Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.

Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.

Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.

Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.

Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.

Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...

It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.

Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.

I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.

But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.

Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.

Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.

new project, please help

I made this tumblr called What is "high-functioning?" which is an attempt to define the term once and for all, using the Lemony Snicket "a word which here means" paradigm.

You're supposed to be able to submit to it, which might only work if you have a tumblr, but maybe you have a tumblr. If you don't, you can just tell me what to write. I just want to anthologize every single possible use of the term. So please submit stuff that people have said about you, people you've worked with, your family members, famous people, etc.--what did they mean when they said "high-functioning" or "low-functioning?"

take one

I have been thinking about the interesting fact that I am now as developmentally disabled as I'm ever going to be unless I get hit by a car in the next three weeks. Which is to say, people who receive brain injuries before the age of 22 have those injuries classified as a developmental disability. Since I found this out a few years ago, I have occasionally thought about it because I often get confused when I am driving and crossing the street. It would just take a minute and then I'd have two developmental disabilities instead of one.

I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."

I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.

But sometimes I do.

***

I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.

So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.

If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?

I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.

I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).

Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.

When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.

I am not working with those people. I do not look like them. I will do anything not to look like them.

In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.

***

To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.

I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.

I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."

I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.

***

I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.

I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.

"it's social model vs. medical model NOT mild vs. severe disability" transcript

Hey, okay, so I just wanted to say something because I keep reading a lot of flamewars, which is probably a stupid thing for me to do 'cause it just makes me annoyed, but I just ended up feeling like if someone just came out and said this then people wouldn't be so annoying to each other on the Internet.

So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.

Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."

And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.

Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.

And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.

And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"

Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."

Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."

So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.

So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.

And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.

high-functioning is dumb take one

in other news, I continue to hate the term "high-functioning" so much that I want to start some sort of google-bombing project or something so the first result for high-functioning is an explanation of what a dumb thing it is to call someone. I'm going to try to make a really short, simple list of reasons why it is such an insulting and inefficient term.

1. people who are labeled "high-functioning" are still disabled and therefore less "high-functioning" than people who aren't disabled. But referring to someone as high-functioning can cause the conscious or unconscious impression that the person's disability isn't significant or real.

2. describing a person's disability by comparing it to other people's disabilities is kind of messed up. If some people are "high-functioning," then other people are "low-functioning," which I think is a terrible way to describe a person. It makes it sound like the person contributes nothing to the world. But even setting aside how insulting these terms are to severely disabled people, describing mildly/moderately disabled people by saying basically "they're not like severely disabled people" does the same thing as #1--it encourages people to think that a mild disability shouldn't be taken seriously, because the disability is constantly being described in terms of "well it's not as bad as something else."

3. "high-functioning" and "low-functioning" are terms that are ridiculously broad. They imply that if someone is bad at one thing, they are bad at everything, and vice versa. A person ends up being labeled as hf or lf based on just a few things about them. And when (as is often the case) someone is labeled "high-functioning" based on the fact that they are a fluent speaker, or they can pass for someone without a disability, that feeds the already too prevalent belief that being able to speak, or being able to pass, is the same as being successful. This hurts speaking/passing people because our problems are ignored; and it hurts nonspeaking/nonpassing people because they end up receiving services that are way too overfocused on trying to get the person to speak or pass, instead of trying to promote independence, happiness, and communication in ways that are most immediately achievable to the person.

4. "high-functioning" is a term that is ridiculously broadly applied. Since most people who speak are labeled as high-functioning, it's a completely meaningless label that can cover, for example, a person who receives a lot of support in living and has a supported employment job, all the way to a person who lives independently, has a competitive employment job, and has never received any services for their disability.

5. and--most obvious to me, but I never hear people say this--it has always struck me that there is no widely used term "middle-functioning" or "moderate-functioning" (I know those terms are used, but not commonly). But there can't be just two kinds of people with Down Syndrome, or two kinds of people with autism. If you must divide people up by their ability level, you've still got to admit there are more than two ability levels in every disability.

SO WHAT SHOULD I SAY INSTEAD????

Well, if you really have to divide disabled people up and compare us to each other--which I admit is sometimes necessary, for example when you are thinking about who needs what services, or if you are having a discussion about passing/speaking privilege--I think it is better to say mildly, moderately, severely, and profoundly disabled. Now I still think this is super blurry because again not everyone is at the same ability level for different things, but at least there are four options to choose from instead of just two, and at least the terms don't sound as ridiculously weighty and pervasive as high-functioning and low-functioning. "Mildly disabled" still has the word disabled in it so it doesn't imply that the person's life is awesome and easy. "Profoundly disabled" also has the word disabled in it so it makes it clear that the person's disability is all that is being talked about--it doesn't imply that the entire person, their soul, is "low-functioning." (Also, although I know this is silly, I enjoy using the word "profound" to describe people who are so often devalued.)

However, also try to avoid dividing disabled people up with these fuzzy terms at all. A lot of the time when people are running around saying "high-functioning" or "low-functioning" it would be a lot easier to say the person is good at math, or nonverbal, or something. You can best serve and support a person when you think very specifically about what their abilities are, instead of trying to categorize them in such a general way.

Yeah so I'm serious about wanting to google-bomb this and I would appreciate people's suggestions about what to add and subtract.