when loving your enemies is hating yourself

Some more about the stuff the other day.

I think having compassion or trying to understand someone's point of view is a luxury.  Well, luxury is the wrong word but I mean it should never be your first priority in a conflict.  Other things are more important, and compassion/seeing other people's point of view should only be attempted if other things are there first.

Lia left this comment on my pop culture blog where I had reviewed a glurgey YA novel about bullying:

"i can say this as someone who often tries to cope with things by being sort of detached but also outwardly optimistic and upbeat even if i'm not really feeling that way, it's not actually desirable or emotionally healthy to react to everything that way. a person who acts like that in response to bullying in real life is still going to be affected by the bullying, but they're more likely to turn their feelings about it inward on themselves. instead of (rightly) getting angry at the bullies, they might get angry at themselves for being bullied, for being unable to stop the bullying, and for being angry/upset about anything in the first place. sometimes these are people who have been taught, or have decided, that it's morally wrong to feel or express negative emotions. sometimes these are people who can react really calmly to being mistreated because they are very used to it and honestly believe that they deserve it or that it's normal. and that's less inspiring than it is depressing."

Lia is pretty stellar.

My mom has been visiting me and tonight we were having dinner with the family I work for.  We got on the subject of different illnesses and injuries I had when I was a kid and how usually people did not realize what was going on because I didn't have the level of distress they were expecting.

Not having enough visible distress is something I really hate about my life, to the extent that I've always assumed it was some kind of trauma reaction.  There's not really a ton of evidence for this so it might just be that I'm projecting/imagining that because it has been such a bad experience for me.  It's obviously been going on since I was really little so the list of possible traumas is pretty narrow and it's nothing obvious.  Also, it is a common problem for people with autism so it's either that it results from a traumatic experience that a lot of us have, or it just is part of autism.

In addition to less visible distress I also have more trouble noticing and identifying my feelings than other people do.  To make things even more annoying, I sometimes develop obsessive fears about having certain feelings and because my feelings aren't very concrete to me in the first place it can be really easy for me to get convinced that I'm really feeling those things just because I'm worrying about feeling them.

I really confused someone recently by talking about how far I'll go to avoid situations where someone downplays my disability or refuses me services.  I basically have chosen not to ever pursue any kind of services because if I was not able to get them, I would get too upset, and to me that's more important than a chance to get help I need.

I guess it doesn't make that much sense to other people why it affects me so much if someone doesn't think I have a significant disability*, even if the person isn't a close friend or someone who has a lot of power over me.  The reason it affects me is that I don't feel secure/distinct about my disability but it's very important for me to know that I'm disabled in order to manage and cope with my life.  I surround myself with people who either support this, or don't talk about it.  If someone says that I don't have a significant disability then that idea is introduced to my brain and even if I know the person isn't that smart or doesn't know me that well, it introduces a lot of doubt and I start seeing myself as a liar and a faker and can become suicidal or otherwise be affected in my day to day life.

*(I know some people use the term "significant disability" to mean a "profound" disability like my boss has, but I'm literally using it to mean a disability that is significant, i.e. it affects my daily life in a lot of major ways even though I can work, talk, etc.)

If someone says I'm not disabled or says something else that demonstrably isn't true, but would be threatening to my quality of life if I believed it (for example, saying that the family I work for hates me), I immediately want to remove myself from that person and see them as an enemy.  I don't want to engage with the person about this or even think to myself about why they think what they do or why they said it to me.  If I think about it too much, I will definitely start believing it so I just have to be brief and rational--it's not true, they were wrong, it's a harmful idea, and I'm rejecting it and the person who introduced it.

By the way this can be pretty unfair because someone who is perfectly nice might just make some uninformed statements about my disability or something else, and they might even see their mistake if I just talked to them about it, but I can't talk to them because I can't risk being convinced by them.  If I did talk to them, it would be very brusque to just give them the information about why they're wrong in case they want to think about it, and then end the conversation.  I probably wouldn't do this with most people, because it obviously seems mean and hurtful, but it's the only way that I would be able to engage without potentially hurting myself.

I'm going a bit off track here--the original thing I was thinking about was being secure in knowing when someone has hurt you, and being secure in the idea that it's wrong for someone to hurt you.  Some people are secure in this and some aren't including me.  In my opinion, if you are like this and immediately attempt compassion (or you encourage someone like this to immediately attempt compassion), what is really happening is that the person could hurt themselves.

For example, let's say Emma and Shirley work together.  Emma is very brusque with Shirley, makes fun of the way she walks, talks, and looks, never thanks her for anything she does, and is patronizing.  Shirley is hurt by the way Emma acts and finds it to be insulting.  She doesn't like Emma because of it.  Shirley decides to try to see the good in Emma and treat her well even though she doesn't like her.

On the other hand, let's say Shirley never gets to the point of being insulted and not liking Emma, even though Emma is treating her disrespectfully.  Trying to be compassionate, Shirley always makes excuses for Emma or tries to think of reasons that she has done something wrong to provoke Emma or reasons that she is wrong to be upset by the way Emma acts.  When Shirley has negative feelings toward Emma she tries hard to make herself feel the opposite and see Emma in the most complimentary light.  Shirley works so hard to be nice to Emma that she comes off like she particularly likes her, even though Emma is extremely rude.  I have been in this situation a few times and I think it damages me when instead of focusing on seeing that someone is treating me badly, I focus on seeing the good in them.

I have to assume that most people (or at least people who have tried to encourage me to be more compassionate/educational/thinking about other people's feelings) take it for granted that they will see it as wrong for someone to hurt them and that nothing can change that.  Then when they talk about compassion, maybe it's like they're skipping the foundation that should be in place; they always have it so they barely notice it and don't mention it.  But to me, because the foundation isn't there, they're advocating something quite different.

Without the foundation, loving your enemies is just hating yourself.

//

(1)

People are well-intentioned when they say that anyone can do ___ regardless of their disability, but it actually just makes them look ignorant. I understand the idea that a lot of people with disabilities who would want to do something and could do it are not receiving the support they need, and too many young PWDs are told they'll never be able to do the things they aspire to do.

If someone wants to do something you shouldn't tell them they can't do it, but that's different from making generalizations about everyone. My personal least favorite is "everyone can work." Well, for example, how is someone going to work if they can't move anything except their eyes and aren't suited for a job that they could perform just with their eyes? How is someone going to work if they're so depressed they can't get out of bed in the morning or make basic decisions? How is someone going to work if they're consumed by a desire to physically injure themselves all the time and it takes every bit of energy not to do that?

I wish this wasn't the case, but I hear people using the phrase "everyone can work" in almost an aggressive way, as if it's ignorant for a non-disabled person to say some disabled people can't work, or cynical or lazy of a disabled person to say that they themselves can't work. I think this shows a fundamental lack of empathy and if you don't understand why some disabled people can't work, then you shouldn't even be talking about disability and work because you are really uneducated.

Sometimes it seems like providers, family members, and even self-advocates have a homogenous idea of "disabled people" and they don't make room in their head for the large percentage of disabled people who don't fit their image.

(1) Actually I think Ratatouille does a good job addressing this issue, by acknowledging the difference between "everyone can be a great artist" and "a great artist can come from anywhere."

2.

My client cannot talk and often doesn't respond to things quickly. Her volition is pretty confusing to me when it comes to movement so all I can say is that her movement can be pretty telling, but I sure don't expect her to move on schedule or on command.

I feel like all this is implied with the vague label of "profound disabilities" and presumably we all know about people with "profound disabilities," so why is everyone so confused? I don't know what to say when people ask me why she doesn't look at them or answer them. I don't mean people with no experience, but people who are at programs with their disabled family member or client, or are even running the programs.

Also the eternal question, "Does she understand everything I'm saying?" to which the answer is a resounding, "I don't know."

Maybe I'm just a crappy person and I can tell you the idea has occurred to me before, but I get extremely impatient. It feels like a lot of people either demand responses from her due to their wholly unfounded assumptions that she can give one, or they just don't think about her at all. The idea that someone without obvious communication might enjoy some attention is just as baffling as the idea of someone without obvious communication existing in the first place.

I've sometimes gotten the impression that stuff that's "for developmentally disabled people" does not try to be inclusive of developmentally disabled people with certain support needs or that people who are "interested in working with developmentally disabled people" do not find it interesting to work with developmentally disabled people with certain support needs. I'm glad to say I haven't seen any extreme examples of this in the 5 months I've been working at this job--just impressions--but Single Dad Disabled Daughter writes about some infuriating stuff.

3.

On the other hand, I have a disability and I do have a job and answer people when they talk to me. So people who like disabled people who do those things should like me, right?

Well, not really.

I'm not sure why it is that a lot of people who claim to like and enjoy people with developmental disabilities, or even work with them, have a problem with people who are slower than they are, can't do things that they can do, or just look or act different. When they meet someone who they don't immediately recognize as disabled or who they aren't meeting in a context where they would expect to meet a disabled person, the friendliness they would show to an Actual Disabled Person is not there at all, and they are just as contemptuous as anyone else would be about the person's impairment.

The only thing I can think of is that when these people relate positively to disabled people who fit their idea of disabled people, they're not doing so because they actually like people regardless of disability, or even because they like personality traits that sometimes come from living with certain mental disabilities. It's because they've created a new category, "developmentally disabled people," that they see as different from other people and relate to differently from the way they relate to other people.  If a developmentally disabled person is too much of a peer, or looks or acts too similar to non-disabled people, they can't put them in the "developmentally disabled people" category, so they can't accept their disability.

Maybe it's an Uncanny Valley thing but I don't really care because I am coming out of the following situation.

I had a friend who spent a lot of time working with a group of people with developmental disabilities who are quite different from most people I know, and I knew that she liked that group of people a lot. Technically, she knew that I had a disability, and even professed to support disability rights. That sounds like a pretty good deal on a friend right? It was a long time before I admitted to myself that this person made me feel scared and uncomfortable about nearly everything related to my disability. When we met someone who I suspected might have a disability, I cringed inwardly because I knew she would criticize the person later for being too slow or too weird. I was afraid for her to meet my closest friends, who are all Autistic or crazy, because I didn't know if they would be able to hide their disabilities well enough to avoid being criticized by her.

There are some people who you know are friends with you because you're just barely good enough for them. And actually, there are people who are friends with you because you're bad enough for them, too--you're a "special needs" person to them, not an equal. Maybe I'm becoming an asshole but I have no interest in either type of friend anymore.

Iceberg problems

I wrote something like this in a Facebook comment a long time ago and I realized I didn't ever write it up here like I was planning to. I've been thinking about it because it applies to a lot of things other than disability, but I'm sticking to disability in my explanation of it.

So from your (universal disabled person's) point of view, there's the stuff other people notice about you that's different or seems to cause problems. Then there's your actual problems, differences, and/or suffering which is going to be most obvious to you and maybe some people who are close to you.

I don't know if I'm explaining this well but just think of an iceberg, where people notice the tip of the iceberg but most of the reality of what the disabled person experiences is underwater. Here is an example about Clayton, hi there Clayton if you ever read this blog. (Aside from this most of the examples are going to be about autism.)

When people meet Clayton they notice that he walks and moves differently. Sometimes they wonder if his physical disability includes an intellectual disability. They find out that it doesn't, and then they think of his disability as consisting of how he walks. Sometimes they even come to feel that the way he walks isn't that different after all and then they "don't even notice his disability anymore" or "don't think of him as disabled."

They don't see fatigue and physical pain that Clayton suffers due to having CP, and he said that some people actually try to argue with him when he explains that his disability is more than the way he walks. This can happen with people he's been friends with for a long time.

It's obvious that people do this when they don't have experience with disability, but the weird thing is that they also do it when they do. It's a major trope in arguments between disabled adults and parents of disabled children that the parents will tell the disabled adults they're not really disabled or they're not really suffering. I don't think this is something that happens because anyone is an asshole. People just get really upset when they think someone is claiming an experience they don't really have and they see it as an insult to people who really do have the experience.

As far as I can tell, this is how it works: people see the underwater part of their family member's disability, and maybe they don't even see how things look to someone who doesn't see that. They don't see how maybe if a stranger meets their family member in the right context, for a short enough time, they don't notice how the family member moves or that they have trouble talking. They know when their family member is about to flip out from stress, so they don't realize that to most people, the person is going to appear calm until they're actually screaming.

If they notice that their family member is really good-looking or sweet or charismatic, they just see that as a coexisting thing or (depending on their attitude toward disability) maybe something that makes the whole situation even sadder. They don't realize that some people are actually going to be much more unlikely to notice signs of the person's disability, or admit the severity of the disability, because they find the person pleasant to be around.

Or, if they notice all of this, they think it's really awful and unfair that people don't understand that their family member is disabled and they wish people could see beyond the surface.

But at the same time, when these people look at disabled people who aren't their family member, especially people who they are inclined to see as other or as their opponents, they don't imagine there is anything beyond the most superficial and loudly stated markers of disability, and they even argue with those. They don't try to learn about what might be happening underwater to make this person identify so strongly as disabled. They don't just give the person the benefit of the doubt and assume there is probably a lot of stuff going on they don't know about.

(Probably my favorite thing was seeing someone argue that her kid is more severely disabled than other people who are perceived to be equally disabled to him, because she knows that he works really hard to appear the way he does.)

Obviously if the point of this post was to criticize parents who attack disabled people this way, I'm beating a really dead horse and my current one post a month output could be channeled in a more creative direction. Everyone knows it is boring and makes disabled people feel really bad.

However I haven't seen a lot of people acknowledge that disabled people do the same thing to other disabled people who they don't agree with. I can think of a few A/autistic bloggers and writers, who don't always have the same opinions about disability as each other, but who obviously feel that they have different opinions from most Autistic people who talk about disability and most Autistic-run organizations. Whether they talk in vague terms or about specific people, these writers usually seem to feel that everyone they associate with "anti-cure" or "neurodiversity" or "anti-ableism" is a homogenous army and none of us are as genuinely disabled as they are.

This is pretty interesting and I've had some conversations with these people where they try to argue that yes okay, maybe everyone can't immediately tell they are disabled from reading their blog, but they still have the right to call out other people and question their right to an opinion because they couldn't immediately tell they were disabled from reading their blog.

Of course this isn't limited solely to people who tend to chew out individuals and organizations that I like. I am a pretty big perpetrator of it myself. I tend to perceive every disabled person I meet as more skilled and/or better off than me in some way related to disability.

1. They are better at doing stuff than me.

2. They have more normal emotions than me.

3. They have a better work ethic than I do (which I guess is a way of just saying they have better executive function and don't ever want to cut their face off from being scared to the point that it is hard to do anything).

4. If it seems like they really are worse at all this stuff than me I just figure that they're probably dealing with it a lot better than I am so they're morally superior to me.

5. Or maybe they're not pushing themselves as hard as I'm pushing myself, that must be nice.

6. They have a disability that other people are going to recognize as being real, like they are in a wheelchair. Therefore they have it better than me because they don't have to feel bad about themselves and everyone understands what they're going through.

This doesn't make me very good at being compassionate towards other people or making friends with them, but you might be interested to know that occasionally people slip through and we become friends, and all of these things are usually NOT true. Most disabled people I've become friends with suck really hard at everything, push themselves really hard, and have a lot of problems that aren't immediately apparent.

Not to be overly broad but even people without disabilities can have underwater stuff. Depending on what someone's problems are (like if they have to do with belonging to a marginalized group) they might have more or less underwater suffering and work and experience going on. But we all have insides and we do ourselves a disservice when we don't work to recognize that.

(Note: I obviously don't think it is objective or even defensible to say that there are really "invisible" parts of a disability that no one can possibly notice without having them or being extremely close to someone who has them. We don't see a lot of signs of disability because we're taught to assume that no one is disabled. But even though I think it sucks, that is how most people function now.)

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

some disabled staff person fragments and facts

So I’m working at the summer camp I worked at last year, which is a sleepaway camp for teenagers and adults with developmental disabilities, and it’s reasonably progressive and all that. I mean, very, probably, I should be grateful.

But Disabled Staff Person is just hell. Always has been always will be.
2.
I’m crunched for time and if I try to write a really long well-thought-out post about why this is, I’m afraid I might never finish it, so I will try to outline this briefly. I think it’s really weird that heterosexism and cissexism are commonly used words but that there seem to be no equivalents for other kinds of oppression. On the one hand it bugs me when people use words like heterosexism and cissexism about situations that are clearly about hatred of ssa and trans people; I agree that words to describe oppression ending in -phobia are problematic and should probably be replaced, but words like heterosexism imply the problem is about normativity and kind of erase the impact of actual hatred and violence and discomfort and fear.

But normativity also blows, and one of the most frustrating things about it is something that’s also one of the most frustrating things about being disabled in general--the feeling of not just pain but being sure that your pain isn’t really so bad and shouldn’t even count.
3.
So during training for camp, we learn about disabilities obviously, and we sit there and someone goes, “So does anyone know someone who is autistic? What can you tell us about autism?” and someone else goes, “Well, I was an aide for a little girl with autism and they don’t like to be touched, like they really hate it.” This one guy even says, “Well, all the autistic people I know really hate the taste of ground beef.” Both these things are not at all universal and I find that the stereotypes about touch, in particular, can lead to a lot of problems. But even if they were saying perfectly accurate things, this is the most uncomfortable room for me to be in. I learned about autism not because I saw it, but because it was never outside me.

I can’t count how many times I have been subject to this kind of assumption, either in an able-normative group like in the above example or in a comment specifically directed at me--”oh, my daughter is interested in autism just like you are,” or the classic “good for you, it takes a special person to do that kind of work.” Clearly I cannot be interested in autism as something to “get into,” as it’s just always there for me to look at or try to escape; and I’m no more special as a counselor for disabled campers than non-disabled counselors are at a mainstream summer camp. But no one really considers that they might be directing their standard-issue comments at someone for whom what they’re saying doesn’t really make sense.

Sometimes I even get these comments when the person does know I have autism and probably would understand if forced to confront it that what they said is inconsistent. People also perpetuate able-normative environments when they know I have autism (like my professor who asked the class if any of us knew a person with autism who was in college). I guess they keep those two clumps of thoughts, “Amanda is disabled” and “disabled people are Other,” carefully spooned on opposite sides of a plate. The clumps never touch. They don’t change.
4.
I believe you always regret telling. There are exceptions, like Liam and Noah, but definitely no one I have worked with or for. Obviously everyone knows horror stories about people who were suddenly considered unfit for a job simply because their superiors found out they had a stigmatized diagnosis, but being stiff upper lip I’ve never had occasion to experience this. What happens to me is quite small: I work out that someone will be okay, and I tell them, and it seems okay; or I have worked out that someone will be okay and I consider telling them because I feel close to them or I think it would be in some way relevant to something we’ve talked about. Eventually, through the accumulation of offhand comments and reactions I realize that while this person is more okay than most non-disabled people, the chasm between their outlook on disability and a disabled person’s outlook is, well, not massive, but no less galling for that.

If I’m lucky, the first piece of evidence I get is the person’s selective memory. I mention that I have autism and they act all surprised even though I already told them. Or I make a comment that has certain implications when made by a disabled person, and they respond as though it was made by a non-disabled person. This is kind of a cool situation because just as I learn that the person isn’t really so “okay,” they tell me in the same breath that they don’t remember I’m disabled--so I can just slip back under the radar, fuck yeah.

Or if I’m lucky, I still haven’t told them and then I hear them say something about how “fascinating” and “textbook” a camper’s stimming is. (I see your “Aww but she’s in school, that’s just how people act when they’re in school” and raise you a “I’m not saying she’s a bad person but would you want to be around someone who treats the way you move like something on the Discovery Channel?”)

If I’m not lucky, someone knows and I know they remember and accept it as a consistent part of me which is swell, but then I start realizing that they have a certain lack of faith in the capacity of disabled people to perform tasks and come up with their own ideas. One time this happened with someone I worked for, and the chill of knowing that despite their stated anti-ableist beliefs they probably wouldn’t have hired me if they’d known made me sure I never want to tell an employer about it again. After all someday I’ll need a reference.
5.
You probably know this if you know me but for some reason I didn’t put it into words until a few days ago--my most surefire trigger to get in a state (crying, mania, self-injury/being suicidal) is being made to feel that my disability isn’t real, isn’t visible, or isn’t recognized by other people. In fact it’s hard for me to remember if I’ve had any states in the last year that didn’t have that at least as an aspect.

Last week one of my coworkers, who I had until then considered a friend and vice versa, told me that he thought campers who had meltdowns were “brats who needed discipline.” After unwisely plodding through a conversation about this topic, I ended up lying in bed for hours sobbing and thinking about stabbing myself with the scissors in my backpack (which I only didn’t do because I was sharing the cabin with three sleeping disabled kids). At maybe two I wandered outside my cabin and stood next to one of the camp bathrooms and called my best Autistic friend, who had to deal with my speech which was kind of in pieces. I was upset because what this guy had said to me had hit my trigger point, but also because I couldn’t talk to other staff about it. I mean, I did. I’ve contributed to this guy being unpopular by repeating his comments, because I really wanted to say them and have someone else say they were bad--and everyone did, but for other staff it’s not bad on the same personal level, it’s a professional disagreement, and ultimately I’m just one of many apparently non-disabled staff getting into some non-disabled staff drama.

Whereas for me it’s not about disliking him in a general sense, but actually feeling terrified and threatened; and almost getting sick from the distance between how kind and friendly he was to me (someone he thought wasn’t disabled) and how that kindness and gentleness apparently gets lost when he looks at a kid who has meltdowns or wanders or doesn’t listen to him.

Counselors have been met with and given a talk--no more gossiping about each other, and if we criticize each other we should do it directly. We’re supposed to move on from the drama. (Who is the we that is going to move on?)

That’s all for now. Fuck my life.

Hi everyone. My name is autism and some mood/anxiety stuff but a lot of people just call me autism. I’m 22 and about to graduate from college. There’s not really much to say about me--I like Skins, I move very quickly, I’m not a great disability to go to church with. But overall I’m just like any other disability and I want the same things.

Well, except that I happen to have a person. My person is called an Amanda Forest Vivian Spectrum Disorder, or AFVSD for short. I was diagnosed with AFVSD when I was nine and she has caused me to have problems with social communication and being gayyy. But seriously guys, that’s between her and me. My AFVSD is none of your business--I’m first and foremost autism, and I want to be treated that way.

The most difficult disabilities for me to be friends with are the ones who don’t respect me as a disability and just treat me like a PERSON. They don’t even see me, just a stereotype of what a person is. They’re so busy looking at my Amanda Forest Vivian Spectrum Disorder that they don’t realize when something is too loud for me, or when I’m really not feeling good and might end up werewolf-attacking AFVSD. Then they act all surprised, but if they just treated me like autism instead of "Amanda," I would be able to achieve more of the things that I want.

No matter how different I may seem with this giant lesbian tragedy attached to my face, please remember that I’m a disability first and a person second--so please use disability-first language to show that you respect me as a whole disability and aren’t obsessed with my person. It’s the LAW.

Yours in disabilitycapades,

autism and some mood/anxiety stuff, ES-FUCKING-SQUIRE

P.S. My AFVSD continues to prefer person-first language and isn't saying otherwise, but neither of us can handle nothings-with-persons thinking they have a right to actually criticize and correct disabilities for not using PFL, especially when they complete ignore actually important things that disabilities are saying about anti-ableism in favor of bitching about a LANGUAGE USAGE THAT SOME OTHER NWAP TOLD THEM TO USE. FOR FUCK'S SAKE.

so, I'll come out and say this: Christianity/disability = OTP for life.

Maybe I mean religion in general but I'm not going to assume I know other religions enough to make that judgment.

I know that a lot of disabled people are really offended by the idea that being around disabled people is a big spiritual lesson. But I feel that it is for me, and that being disabled is a big spiritual lesson, also.

So much of what we think we want and need, or need to be, are just things we've constructed. So when we can't do the things we think we must do, then we have to see that all of this is not objectively real. In the most terrible periods of my life, my eyes have had to unfocus to survive and it becomes all about color, sleep, crushes, laughing for a minute, the sky, finding something on the ground, really small pieces of Love.

As I have said, I can often hold on to what I'm told I need to be, which is I guess um--what an embarrassing phrase--my blessing and my curse, and I guess the curse of the "hf," the "barely disabled," the "invisibly disabled," blah blah blah. I don't have to let go of all of it although of course this puts me into a constant state of panic because holding on is almost impossible for me and I can feel myself almost losing it, and maybe I'll never let myself lose it, I don't know, or maybe I'll find a life that I can actually live.

I am glad that I have gotten to know people with severe and profound disabilities because I have learned that people who cannot do and/or have some of the things that are supposed to be mandatory are still people, and their life is still life; and then I see what's actually real, which is, you know, real life, not "success." So yeah. I have learned spiritual things from being around disabled people. Which I guess I'm not supposed to say. But it's difficult to avoid.

Something about being queer and disabled (and specifically Autistic) and Christian and semi-synesthesiac and whatever else is just that really brief connections and experiences always continue to exist for me after they're gone. I don't see there as being an end other than Love--many of the "means" are really that end, and the ends are just means to throw us into Love and sometimes tear us away. So I can keep my pieces of Love with me because I can always see them in time even when they are gone.

One of my classes in the UK was taught by a professor who kept making fun of Christianity and religion in general. She said, "You never see people wearing a gold electric chair around their neck."

Well, the thing about me is, of course I would. That's why I'm Christian. I know perfectly well that's what it is. And maybe being disabled has put me in this kind of twee-pop place of wanting to say, "Fuck yeah failure." Yes? Maybe?

thinking more about "updating" the wheelchair symbol

re: this

I think that because it’s primarily used to indicate stuff like extra space, shorter distances, and seating, it isn’t as vital that it be inclusive of mind disabilities. To my knowledge the people who are most hurt by the current symbol (in terms of the attitudes it promotes) are people who need those things, but don’t use mobility aids, who can for example be pressured to stand up and give the “disabled seats” to someone else. I remember there being a few posts on FWD/Forward by contributors with fatigue, pain, and mobility disabilities who have experienced this. Obviously this is challenging to fix because it’s hard to make a picture that immediately communicates CFS/ME or something like that. And I also think that because the current symbol is so familiar, changing it to something like the open door would create a lot of problems.

So I think that the best symbol would be something like this (except done by someone who can actually draw):



This is much cheesier than the cool-looking person pushing their wheelchair, but I think it could work because it:

1. keeps the original symbol that people are familiar with, so they know immediately that it’s a “disabled access” sign (sorry the wheelchair user looks so weird, I was trying to point their hand so they could be reaching for their joystick but they just ended up looking depressed)

2. shows a person with pain in their back and leg, which brings in the idea of people who don’t use mobility aids and reminds the viewer that such people might also be among those who need the seats, parking spots, etc.

3. shows people with different kinds of impairments to remind the viewer that there is more than one disability that would cause someone to need these things, and hopefully suggest that there are even more disabilities than the ones portrayed here

#3 might be expecting too much of people, but even if people look at someone in the disabled seats and think “oh, I don’t see any mobility aids, they must have a bad knee,” that would still improve how that person is treated.

thoughts?

reality in states; or, why I'm not going to overshare all the time anymore

(I was going to write an actual post about this, but I basically summarized the entire planned post when I was talking to my friend and I think the summary works equally well to get across what I have to say. This is slightly an announcement about the direction of this blog--or maybe it's an announcement that I'm getting back on track, after veering in some fucked-up directions--but I also just think it's an interesting problem on its own merits. I've edited the conversation to remove my friend's comments, and to avoid doing what I am, at this point, resolving not to do.)

me: well I feel like I've known a few people who like
11:07 PM 
will get in a really depressive state and they can't separate the depression from what's true
so like for example they'll basically go on a crusade against some thing or person they see as being bad
and for people outside of it it's kind of obvious, like "wow, no matter what happened, this person is not really experiencing reality"
11:09 PM 
me: well, so my blog becomes the narrative that I tell myself about my life, if I write in it a lot
me: and at periods when I'm in really bad emotional states, I often have this narrative going really loud in my head and when it's really bad the narrative becomes less and less connected to reality
11:13 PM 
now, I guess I feel that what the narrative has been lately is basically probably true in some sense
"I'm disabled, people don't read me as disabled, people don't respect disabled people, people expect things of me that I cannot do, this is bad, etc."
and it's okay for me to write about this obviously
but the problem is when I get into some sort of state
11:14 PM 
and I don't think I have a mood disorder, but I guess it's also pretty normal for a lot of people with autism that we just get into a state when something is overwhelming for whatever reason, and it just sort of takes over everything and it's not that different from a depressive or manic episode
11:15 PM 
me: and, you know, I think my states are probably who I am and would probably happen no matter what--although they're affected by my stress level and other stuff, I definitely think they've been much worse this year and much harder to transition out of. I mean, some of the things that put me into states are really not fair and I'm justifiably angry about them, but that doesn't mean that I'm in my right mind when I'm in the states.
anyway I think the problem is
I get in these states and the narration in the states is like
11:16 PM 
"everything is so hard, I'm a waste of space, my autism is like this giant pile of shit I'm carrying around, I have a horrible brain, I want to [blah blah blah self-injury blah blah], if I just [blah blah blah self-injury blah blah] everyone would believe I was really disabled and maybe someone would use what happened to make a point about ableism which would be the most useful thing I could do"
11:17 PM 
me: and on the small scale, this is so bad I'm totally worthless I'm going to [blah blah blah self-injury blah blah]
and all of this, is like
me being in a state
yes, probably the opinions behind what I'm thinking are things I would stand behind when I'm feeling all right
but the whole thing is like
not really completely attached at the hip to reality
HOWEVER
11:18 PM 
I think sometimes maybe because I want support but also because my states superficially resemble stuff that I write about when I am in my right mind
I end up writing on my blog about how I want to [blah blah blah self-injury blah blah] or something, because in the state it looks to me like it fits in with my other posts. when I'm in that state, it feels like hurting myself would be a political act.
but...making those posts is not a smart or okay thing to do.
even if I think I'm doing it to make a point or something
11:19 PM 
what I'm really doing is letting my states take over completely
and instead of just understanding it's a state it's kind of awful maybe I can distract myself or talk to someone or maybe I just need to pray or sleep it off, like I start believing in the validity of the state
even when the state is like, I need to hurt myself, my life is so sad there's nothing good in it
11:20 PM 
um...so yeah I'm not going to write about this kind of stuff on my blog anymore. and I want to write a post basically covering this because I think it's interesting and may be helpful to other people who have states
although I do understand the irony of writing a post about this when I just said I wasn't going to post these really intense emotional things.

shaky bases

(kind of worry that this post is developing an Oppression Olympics tone, which is so not my intent, to say that one group of disabled people has it worse than another group--I'm just trying to articulate what I'm feeling and why it's different from what people with other disabilities might feel.)

This is hard. I identify as disabled, or Autistic. Or developmentally disabled, person with autism, , or a headcrip (thanks Samantha). Also sometimes a bad brains, but let's stick to what I'm saying in a better mood. Or let's stick to what I say when I'm trying to be objective, which is: autism. ASD.

Something that's really hard about identifying as disabled and having autism, that I don't think is an aspect of being blind or having cerebral palsy or being deaf, is the feeling that the base of your identity is subjective or could be taken away at any time. Like--identity comes in two parts, the objective fact and the actual identity. You're deaf or hard-of-hearing and then you're also Deaf. Or you have a physical disability and then disabled or PWD or crip can become one of the important things about you.

Anyone can argue with the idea of disability identity or indeed any kind of identity, but generally they can't argue that someone who has cerebral palsy and identifies as a "crip" doesn't have cerebral palsy. They can argue with the word crip and the idea behind it, but they can't deny the CP; or if they do because it's not that obvious from the person's physicality, I can't imagine it can shake you up as much. Because...if you have CP, you know you have it.

Whereas the idea of autism is this incredibly odd thing that almost no one can live down to in real life. I always hear (and read) doctors saying things like, "this kid had an autism diagnosis but he hugs his family," and instead of the response being, maybe I had the wrong idea about autism, it's always, "so many kids are misdiagnosed with autism!" (and this is not a new thing, I read it in a book that's 15 years old). And, technically, they have the authority to say that, and so many of them do, so it's like, you objectively have autism only as long as a particular doctor said it, but you're just waiting until the next minute when another doctor will say you don't. Because all these things--not necessarily accomplishments but feelings, qualities, where your eyes go--will mean that to some person or other.

The doctor I went to recently to get learning tests didn't have particular experience with autism, and I didn't think that would be a big issue for me. I did want a rediagnosis of PDD-NOS, which I was able to badger him into, but I mainly just cared about knowing what my learning and thinking problems are and I didn't really care if he called it ASD or NVLD or ADHD.

But, you know, he called it the last two, and it made the process of talking to him really strange. We talked a lot about personal stuff before the testing started, and obviously I mention I have autism when I talk about myself; it's part of my life, and sometimes I say, "I also think this might be going on, because I talked to some of my friends who also have autism, and they have also experienced this..." The doctor, while very nice and very good at thinking about learning disabilities, obviously didn't know anything about autism--I'm not being a bitch, it was just clear that it wasn't his field. So there would be this little record-scratching sound whenever I said the word.

"You keep saying you have autism. Who told you that?"
"Oh, this isn't about autism..."
"Autism? I thought we decided to throw that out."

Like, I was seriously at a point of wanting to be like, "Whenever I say I have autism, just pretend I'm saying I'm Catholic or I have arthritis or I have dual citizenship or I'm a twin. It's not up for debate, it's part of my life."*

It just is really weird to have the base of one of your identities be something that everyone always thinks they can argue the legitimacy of. The untoward lady helped me about this a little bit by saying that maybe the most objective way to define autism is by whether people who identify as having it recognize it in each other. And I guess we are the people who have thought about it the most and lived with it the longest. But we can still never prove it even if we know it ourselves, and that's something that makes us different from most other people who identify with disability culture, I think.

*these things=actually not true

I know this is problematic, bear with me

On tumblr Josh reblogged a post called how to respect someone with asperger's syndrome. I'm sorry to tell you that at this point in my life I'm so grossed out by the word Asperger's that I actually didn't want to reblog the post just because of this, even though the post was really good. But then I thought maybe I could reblog it because I noticed that Josh had added the following:

I identify as “autistic” or “ASD” now instead of aspergers. They’re both an accurate description but “aspergers” seems so tied up with a stereotyped image of ultra-male brained maths geeks that it is of little use as a way of explaining myself to people.

So I wanted to reblog it and add my own thing to that (although I also agree with what he said) but then I was like, wait I bet my own thing is going to be ultra long and should probably be...

Somewhere Else!

So. I've actually posted about this a ton of times--the whole identifying as Autistic/ASD/having autism, rather than Asperger's, thing--and so has everyone else in the world, but I always find myself having more to say about it. There are two explanations I have used, either separately or together.

1. "Asperger's isn't my only ASD diagnosis and besides, if forced to choose, I think my other diagnosis is more accurate." This is true and it's an explanation I really like because it sounds more straightforward. Except, I happen to know that this is a really weak excuse because I've known about all my diagnoses longer than I've been using the word autism/ASD about myself. So that's not it.

2. Blah blah blah politics. The political explanation is something about wanting to show solidarity across the autism spectrum because those categories are artificial and badly defined, which I totally support of course--but that doesn't explain my intense hatred for the term Asperger's. Like, I actually cringe if someone uses it about me and I don't think any of my friends or even my parents would use it about me at this point.

So is this because autism sounds cooler? Because I want to shock people with a really stigmatized identity? I've definitely seen this accusation leveled against people with AS diagnoses who identify as A/autistic, and this was definitely the reason for my identifying that way when I was fourteen, but yeah I don't think it's true anymore now. So why is this word so important to me--solidarity aside, on a pure individual level of the word I like to use about myself?

Okay, so:

I think there's a certain point of mildness, or invisibility, or lack of certain support needs, at which a person with a disability is kind of existing with a foot in another world. I don't use this term to imply something about people with ASD being from outer space or whatever the line is; especially as I'm not just talking about people with ASD. I'm thinking of people with mobility disabilities who don't use wheelchairs, people who are blind who can sort of see well enough to fake it, and people with ASD who can--well, talk pretty fluently, I guess. I'm not using the word pass because I think there are definitely some people who don't pass and still belong to this category.

What's odd about having this kind of disability experience is that people don't read you as disabled in such an immediate way, and you can kind of fit into images of non-disabled people (even if you don't do it well). And you end up feeling, rightly or wrongly, that disability isn't going to suffuse your life the way it does for those other disabled people. You can just do what everyone else does.

And for some people maybe this is really true, and for some people it becomes clear that it's not. And some people like me will have the heady and crushingly depressing and exhausting experience of having that thing be true and false at the same time. But if you're going through this and there is any misery at all, I think you have to be able to know that there really is life in that other world you have your foot in, the world of what you think of as failure--people who need staff and dogs and letterboards, people who can't hide from it like you can.

You have to know that you haven't escaped. Or even if, like me, you keep kidding yourself that you have escaped--a part of you has to be able to tell you that disability is a piece of something inside.

I know analogy is dangerous, but this all clicked for me with the thought of cerebral palsy, just because I knew a few people who had it and I knew it could mean a lot of different things and look a lot of ways, and some people were in my category of attempted escape. I thought of a person who could walk saying honestly, "I have cerebral palsy," and for some reason this was so beautiful it made my head explode.

For me, saying "I have autism" to people who think of me as normal--to whom Asperger's is this quirky 21st-century meme that is almost just a Myers-Briggs personality type--is a way of saying, parts of me are falling off, parts of me belong to this huge sometimes silent country, no matter how I look I am (genetically and deeply) one of the people who most of the world doesn't want to exist--it's this huge, almost spiritual thing.

It's so weird when people will kindly try to tell you, more or less, that you've escaped and you shouldn't use that word. Because Jesus, so much of what my brain feels and does is so terrible, but having a word for it and having a home is the most beautiful thing.

from the inside, #1

Someone I used to be really close friends with, and am now out of touch with and really miss, has a visible disability. Last night I dreamed that I was singing with this choir that was meeting in a building where my friend had classes. He had somehow gotten put on some kind of special ed track in college, which I don't think was academically easier or something (or maybe it was in some way more accessible to people with mind disabilities, and I was jealous) but almost everyone in it had a visible disability. So I was sitting there with the choir practicing, and I looked up and saw my friend standing in a doorway with a bunch of people from his classes and this other guy who had a similar gait to my friend walked up to him and hugged him, and then they started talking in American Sign Language. I was just watching them as I was singing thinking how I wished that I knew ASL and was in their classes and their group of friends.

No, my friend is not D/deaf, but apparently my unconscious mind thinks that all disabilities that are more acknowledged by society are kind of the same thing? I just think this dream is hilarious.

Still. Life.

Yesterday morning I was driving my friend's car crying and asking for God to kill me.

When I went to bed I felt okay. One of my best friends, who lives in Washington State, is here for Thanksgiving, and so is Liam (my housemate)'s sister.

At about twelve or one when I was back from driving the car, Liam and his sister asked me to go to lunch with them. I had just started dyeing my hair but they waited for me and I remembered thinking, it just keeps going. Sooner or later, someone will be waiting for you, sooner or later there will be a new episode of The Walking Dead and you will be curled up watching it with some kind of soda or juice.

I find half-full packs of cigarettes in the park. I go to a college that has electric typewriters and an art library full of my favorite comics from when I was a kid. Liam worries about me and wanders in to ask if I want to watch David Blaine Street Magic for the hundredth time.

(I ask what he can possibly still get out of it but he says, "Now I notice little things.")

When I was waiting to wash the dye out of my hair so I could go with Liam and Jodie, I sent my friend a text: "Is it brave to go on living if you don't have anything you can do?" And I do wonder about this. I am not a depressed person, but sometimes it seems reasonable to think that stopping everything would be better. It's more a tactical decision than an emotional one.

Recently I read a quote about how if you're disabled you have to learn to be a human being and not "a human doing." I see what this means, but I guess I find it really inadequate--I mean, other people would not accept me as a being; if I completely collapsed and only wanted to experience good things, it would just be seen as laziness, depression, or a triumph of disability--a sad story. I have to stay in the doing frame because being from me would be unacceptable.

But I'm just trying to say I am, I am, I am, anyway.

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.

then I got excited

after I made that post and didn't do my homework, because I was thinking how cool it would be to do a project collecting writing/talking from people with ASD who pass or have passed

some areas of LOOK HOW SUPER COOL THIS WOULD BE:

insecurities about stimming/gait etc. Or other things, like speech, or intensity, that people think will give them away
opting out of initiating things, getting too close to people, going into certain environments, because of a fear of getting into a situation where you won't be able to pass
covering rather than/in addition to passing. Passing to avoid covering.
being put in a position of assumed normalcy in relation to people with disabilities and/or mental illnesses--special ed teacher or staff person, student in a psych class, psychiatrist, parent of a disabled child, sibling of a more "visibly" disabled or ill person
intersections of unread ASD with other identities that aren't always read, and/or that the person consciously hides or covers (including ethnicity, class, being same-sex-attracted or trans, other illnesses or disabilities)
intersections of unread ASD with identities that are obvious to everyone (basically everything I just listed can also be "visible")
people who feel disconnected/unreal because of passing, or feel their relationships are damaged by their passing
people who are not read as ASD, but are read in some other negative way instead
decisions to stop passing, how they are made and their affects. Or, people who stop passing and feel they can't help it or don't really have a choice
having people tell you that your ASD isn't real or significant, because of the way you look or speak

anything else?

Our growing and shrinking island

I got weirdly depressed because my friend was talking positively about the head of disability services at our school, who I sort of loathe. (Way out of proportion to what she actually did to me, which was three years ago, but it just was really bad, and I've gotten the impression that she is really great to students with Real Disabilities and not so good to students with Fake Disabilities--to put it bluntly.) The stuff my friend was saying wasn't really different from what I'd expect for her; the two of them had basically been talking about physical accessibility issues and how they suck at school, and how it's even harder now to get the administration to make things accessible because the two students who were full-time wheelchair users graduated and can no longer be invoked as an obvious example of how shitty things are. And she (the head) has now made the administration promise to clean up ice and snow which my friend is really happy about because he had a lot of trouble getting around last winter. (He's ambulatory but has balance problems.)

I think I'm not good at holding two conflicting ideas at the same time, though. So knowing that she works really hard to make school more accessible for kids with mobility disabilities (which it is admittedly not at ALL) makes me feel bad about the fact that I resent her a lot. I also feel bad about the fact that I'm so into "disability stuff" but I didn't even think about the fact that ice would be a problem for my friend. I think that partly because we're going through the MR-->ID shift right now, and also because there are so many annoying euphemisms like "special needs," "developmental delay," "Down syndrome" (used to mean all ID), and "developmental disability" (used to mean only ID), I have a really bad habit of using the word "disabled" when I'm talking about the issues I am especially interested and entrenched in--the issues of people with intellectual disabilities and autism spectrum disorders.

I don't feel good about doing that because I feel like that's exactly what people with physical disabilities sometimes do to us. And it's what some people who identify as allies of disabled people, like the head of disability services, do as well. (In fact I wonder if it's non-disabled allies more than people with Real Disabilities who have such a sense of what a Real Disability is.)

The first time I went on FWD/Forward, I remember being surprised when I read the contributors' descriptions of themselves. Mental illnesses weren't disabilities! Physical disabilities that were invisible weren't disabilities! How could this website be called Feminists with Disabilities, when most of these people weren't Really Disabled? My confusion soon turned into excitement and happiness as I started to feel like maybe, just maybe, I didn't have to apologize four hundred billion times for identifying as disabled. I've really been changed by the disability blogosphere, because I now see issues of ableism, disability, and accessibility as being much bigger and broader and more complex than I thought they were. I know this sounds depressing, but it really isn't, because I can see that many things that I once thought were Problems With No Name are actually related to disability.

However, I guess I also worry that as the definition of "disabled" becomes more broad, there won't be enough attention paid to the needs of people who use wheelchairs. I mean, it makes me really frustrated that I have to depend on my professors' goodwill in order to be successful*, and that I feel like I have nowhere to turn if I have a professor who dislikes me or judges my work harshly because of things related to my disability. At the same time if I do poorly in a class it's not the end of the world. And an infinite number of nice professors can't make campus better for a student who uses a wheelchair. It just completely sucks. I can sort of scrape by in a lot of ways because my impairments clash with people not buildings.

[*I would never, ever go through the disability services office because I know it wouldn't work. On a basic level I need not to be judged for not being able to speak well or understand unspoken rules about what an assignment is supposed to be like--something I can't ask for because a professor is either the kind of person who is going to resent me, or they aren't. Last year when things were really terrible, I asked for some extensions (I've probably asked for fewer extensions than a non-disabled person in the time I've been at school) and I asked to take exams in a separate room on a computer to reduce panic/discomfort. Which is not something that's a stereotype of autism, so I don't think the disability office would support me in asking for that if a professor refused to give it to me.]

I think I just feel guilty sometimes for being so angry about being erased from the mainstream understanding of the word disability. It's funny because to the extent that there is disability stuff at my school, I feel totally erased by that too because it's mainly people with specific learning disabilities. I just go through life feeling there are many things that I'll never be able to do, and I think that something like dyslexia or dyscalculia can shut down certain parts of the world, but sometimes I feel like there's such a small area that I can actually safely move around in and aim for. So I totally find myself mumbling to myself, too, "yeah, come back when you have a Real Disability." Except. You know. Is that ever valid?

The fictional diagnostics explosion

(this post kind of went off the rails, sorry)

There is a space between visible disability and being normal. Before you start going off about how no one is normal, blah blah blah, I'd like to remind you that some people have to constantly worry about whether they're going to fuck up, some people have to go through periods of their lives (or their whole lives) without friends, some people feel that they can't express who they really are to anyone--and despite the fact that they're faking really hard, people still think they're weird. It's cool that you have a tattoo or whatever alternative thing you have, but if you don't have to worry about this stuff, then you are normal. Sorry.

Where was I? Yeah. There's a space where you are not normal and you either actually succeed in hiding it (at great personal cost) or you do a shitty job hiding it, and other people don't treat you very well.

The best part is sometimes you actually tell someone you have ASD, and even if it's a person who has always hated you for being so weird, the response is:

"You couldn't possibly have that. You're SO NORMAL. You're just using that as an excuse because I can tell you're really really normal. Everyone's a little bit different from each other but that doesn't mean they have ~AUTISM~. You're just saying that because you want to be unique or you don't want to be held accountable for your actions."

(This last part is really funny because disabled people have a ton of stuff stacked against us, so being openly disabled is probably the last way you'd try to get out of anything.)

Anyway, like lots of people with invisible disabilities I am used to hearing this shit about myself, so I don't enjoy hearing it about characters for whom I have been an f.d. (remember an f.d. is a fictional diagnostician, i.e. a fan who theorizes that a character may have a particular disability). I'm not trying to say that other fans can't disagree and say, "No, I don't think so-and-so has ASD," but I do have a problem with the contemptuous response, "What are you talking about? You must have put a lot of effort into that theory--so-and-so is totally normal and definitely doesn't have ASD! ASD isn't the same as just being a little awkward!"

This is something I wrote in an email to my friend almost a year ago, when I had ventured to link Stop barging in here and infecting me with your anxiety: Pete, Peggy, and Passing on the Mad Men livejournal community, and had received some withering stock responses:

People are always posting about Pete and calling him a sociopath and a robot; it’s a perfectly accepted part of the show that he is bad with people and very odd, so it’s not just a little bit of shyness or awkwardness; he is impaired, whatever you call it. Early on in the run of the show people used to criticize the actor and say he was “trying to talk like he lived in the 60s” because he has a really strange way of talking. I just feel like people are perfectly aware that this character is really weird to a notable degree, and even insult him for that, but then when someone says “oh, kind of like Asperger’s” it’s like “where did you get THAT from?”

Mrs. Blankenship on Basket of Kisses said, "If [Pete and Peggy] represent an accurate portrayal of Asperger’s then everyone I have ever known fits the diagnosis." This makes me wonder how many people Mrs. Blankenship has met in her life. No matter what you think caused their impairments, Peggy and Pete certainly are more socially impaired than other characters (and more impaired than most people I for one know in real life). Hasn't Mrs. Blankenship ever met anyone more like Ken Cosgrove, Harry Crane (nerdy but still social), Don Draper, Joan, Sal, Rachel...anyone? Every single person she knows in real life is as socially impaired as Pete and Peggy?

I find that really hard to believe. But why would she say that? Why would she imply that Meowser and I, who are people with ASD, don't know what ASD is?

Sometimes I feel like this attitude is just more of what I discussed in part one--the idea that ASD is such an obscure, bizarre disability that no one could really have it. This might explain both why non-disabled people refuse to believe us when we disclose in real life, and why they think it is ridiculous to suggest that a TV character could have it (unless, sometimes, if the TV character is an incredibly overdramatic and unrealistic compilation of textbook ASD traits).

However, sometimes--and I admit this comes out of bitterness--I wonder if the motivation is something more sinister. Maybe people just get really attached to the idea that a certain person is lazy, creepy, "sociopathic," annoying, immature, attention-seeking, spoiled, stoned, or whatever. They like feeling superior. Maybe they even like making fun of aspects of the person that don't quite fit into any of those stereotypes--like the fact that the person moves differently. The movement may poke at something inside people's heads, a concept they've been making fun of since they were kids--like when they would call their enemies "retarded" or "special," thinking of "retarded" and "special" people as almost imaginary, since they didn't know any people who had those labels for real. They're just words. And the way people feel about this lazy, creepy, immature person who flaps their hands has nothing to do with disability at all.



So I sometimes think that people feel cheated out of the fun of judgment, when they find out someone like that is disabled. They feel like it's not fair. Disabled people should look disabled! They shouldn't look like people that I'm allowed to be mean to! In fact, I never would be mean to a disabled person, so I'm pretty sure you're not disabled at all!

I think the impression that ASD is very obscure is probably the main cause of the hugely energetic and contemptuous responses to Fictional Diagnostics. But I think the other one is sometimes there too. People really don't like Pete Campbell--he's a creep. His sins are not really worse than those of other characters, but he is a "weasel," he speaks too formally, he speaks too soon. People call him a creep because he pushes certain buttons. They don't want to think about what that means.