WHO ARE YOU TALKING ABOUT?? or, sorry Pancho

When I was in high school I went to a therapeutic summer camp and I used to make fun of our group therapy sessions all the time. It would go like this:

Staff: I want everyone to say something that's wrong with the camp environment this summer.
Camper: I feel like people are more cliquey than they were last year.
Staff: Which people? Are you talking about me? We don't know who you're talking about.
Camper: Oh I don't know.
Staff: Well, you must have been talking about someone.
Camper: I guess I was talking about...Sam.
Staff: What did he do?
Camper: Well, I guess he always hangs out with his girlfriend and not with other people.
Staff: Sam, how do you feel about that?

It was kind of like a rooster fight. But most Internet drama makes me long to return to my days of rooster fighting at camp. I see so many exchanges that go like this:

Person: Ringo said THIS.
Ringo: Hey, I'm sorry if it sounded like that, but I didn't mean that. I don't think I said what you're saying I said.
Person: Oh hi Ringo! I didn't think you said that. I understand. That's just what some people thought you said.

Or this:

Person: People were doing this and this and this and it felt like this!
Stefan: I'm so sorry if I was doing that or causing it to feel like that.
Person: Oh, I didn't mean you Stefan, you were great.
Damon: Are you talking about me? I really don't think it's fair to say I was doing that. And I can't help it if it felt like that to you.
Person: No, I didn't really mean you Damon. You didn't do anything wrong.
Klaus: I was there, am I one of the people who did something? I'm new to these kind of interactions and I don't really know if I conducted myself right.
Person: No, you were fine Klaus. Don't worry.

Let's say that Klaus, Damon, and Stefan were some of the most talkative people in this instance of Internet conversation and/or drama. So what happened? What is the Person talking about? Was the Internet drama like the Person is saying, or not?

Most importantly...who was phone? If the Person doesn't think that either Klaus, Damon, or Stefan did this and this and this, but somehow the conversation was like this and this and this, who did it? Was there a magical fog in the air that made something bad happen without any individual people doing anything wrong?

I know this is a tall order, but can we please start being honest with people if we think they did something? Or--as I think sometimes happens--if we have a "feeling" about a group of people, but when we look at all the individuals, we realize that none of them actually did the thing we're "feeling," can we admit that maybe it didn't happen that way?

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

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.