More on this later but I think a big reason for my "invisibility" is how much I lie and cover for myself. I don't even see it. Sometimes I try to keep detailed journals and I notice a bunch of things happening that once they're on paper I know don't happen to most people, but in real time I don't even register what's happening before I start lying about it.

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.)

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.

Fallacy Week: The Harder Fallacy & The Uncomfortable Fallacy

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

A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”

Fallacies of relevance can be very difficult to respond to for several reasons.

1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.

I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?

In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.

The Harder Fallacy

JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.

Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”

(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad’” rule consistently, and only apply it to stigmatized groups.)

The Uncomfortable Fallacy

MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.

Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.

(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)

Autistic Passing Project

I finished this a while back but hadn't really gotten to posting all of it. It's here:

http://autisticpassing.tumblr.com

go to the last page and scroll up

(eta: just kidding, I put this in the queue thinking I'd have time to finish posting the passing project, but I actually haven't)

what is an indistinguishable when it’s at home? that is, what do indistinguishables look like when they stand in empty rooms? who could love an indistinguishable? (people do, every day.) what happens to them?

how indistinguishable are indistinguishables? does keeping your hands by your sides really cover for all that could go wrong? what does it take to be an indistinguishable? what kind of thoughts are churning in the indistinguishable mind?

can indistinguishables cry? what does it look like? what kinds of places do indistinguishables go to to cry?

what sorts of feelings do indistinguishables have? what about people who were taught that being an indistinguishable was the first thing they should want—but are incorrigibly distinguishable?

what do indistinguishables eat for dinner? what do they put in their napkin? what happens to indistinguishables who pretend they can cook?

do indistinguishables have rumbly stomachs, or do they try to create a clatter to distract the people around them?

David Foster Wallace used to carry around a tennis racket to explain why he carried around a towel, which he actually used to wipe sweat off himself when he was scared. it’s a good story, but there is no indistinguishable pride parade. all the pride of indistinguishablility is like holding a taste in your mouth in a place where you’re not supposed to be eating.

in Sparta, a boy died holding a fox under his shirt while it chewed up his stomach. this has lasted for millennia as a story of something to be proud of, and why this is the case is something that people in power should be asking themselves, but asking themselves questions is something most people in power are too busy to do.

hurt, power, and disability

Fasten your seatbelts because this is LONG.

In high school I enjoyed reading flamewars between anti-s/m people and their targets, just because it never failed to make me irritated in a comfortably predictable way. It's only natural that I grew up to be fascinated by "but my child smears feces" and other ableist shock arguments, given that I spent my adolescence reading the arguments of anti-s/m people which often seem to consist of listing sex acts that, while enjoyable to the participants, sound gross or upsetting to the average person.

I think what makes me able to derive masochistic enjoyment (ha ha) from anti-s/m arguments, while ableist arguments just destroy me and break my heart, is that there’s less of a sense of immediate danger. A lot of the time, people who are making ableist arguments are in a direct position of power over disabled people, as parents, professionals, heads of an organization, etc., and are actively working to put their beliefs into practice. People who are making anti-s/m arguments often seem to be talking in this weird philosophical way about what sex acts other people should engage in or fantasize about.

I don’t mean to sound like I think s/m people don't get discriminated against, but when it comes to flamewars on the Internet my response to anti-s/m people is one of being annoyed and baffled rather than afraid. Because most people grow up liking whatever they like, sexually, so anti-s/m people seem to be implying that certain people just shouldn’t have sex, which seems like such an obviously douchey and ridiculous demand to make of another person that I can’t believe they spend so much time saying it and feeling as righteous about it as they do.

That said, if I was going to engage with the argument that people shouldn’t do s/m and/or d/s because it’s bad for your politics and your health, I would say that, in an alternate universe where people could choose what sexual acts they were into, there would be very good reasons for a disabled person to think about choosing to be into s/m and power exchange. As an inhabitant of the real world, I just think the intersection of s/m and disability is a happy accident for the people who experience it, rather than something anyone can or should “try” because it can destabilize and alleviate some of the bad parts of being disabled. But I want to write about what those destabilizations and alleviations can be, in the context of stuff like Failure Theory and The Classic Disability Catch-22. A few of the things I’m saying are specific to autism but many of them are not which is why I’m using the term “disabled,” throughout.

One by one I’m going to discuss hurting someone, receiving hurt, dominance, and submission, and what engaging in each of those four things might do, mean, or bring up for someone who is disabled. Most of what I write will be in the form of questions because I’m talking generally, and even if I wasn’t there probably would still be no cut-and-dry meaning or effect or answer.

Hurting Someone

(I’m talking about “hurt” instead of “pain” because I don’t want to imply that I’m only talking about physical pain. I do think hurt is a problematic word for me to have chosen because it seems to imply actual harm, which I obviously don’t think should be present.)

People with psychiatric and developmental disabilities are constantly living against the expectation that we’re going to be physically violent or, in the more “harmless” version of developmental disability stereotypes in particular, that we’re going to offend people and otherwise misunderstand what they want and need from us. Some of us experience police brutality due to being read as "dangerous" just because of the effects of our disability. The idealized behavior for a disabled person is that of working incredibly hard to fit ourselves around and into other people’s desires. If we don’t do this we risk various stigmas, some merely insulting and some negative enough to cause us to lose our job, be arrested, etc., when we haven’t actually hurt anyone.

So, if you live your life having been taught that you could hurt someone at any minute--or maybe you know that’s not true, but you still know that other people think that and you have to manage their reactions to you--what does it mean to decide to hurt someone, and do so carefully and in a way that’s enjoyable to them? What does it mean to realize that, actually, you are not on the verge of exploding and killing someone like in Of Mice and Men--that you can actually be in control of how you hurt someone, and do it “correctly” (for them)?

What does it mean to throw out your usual mindset--be nice, apologize a lot, don’t talk too loud, don’t move too fast? What does it mean for your concept of being a socially skilled person, being polite, or being a good person, if you interact with someone by a completely different (or even opposite) set of rules from your usual set, and this pleases them? Actually I do think there’s an answer to this one, but I’ll spare you the boredom of hearing it from me again.

This is something that I’ll come back to in every section, I guess, and it’s one of the things that is fairly autism-specific. What does it mean to work hard to affect someone in a certain way, and have them appreciate that and see it as something that takes energy and skill, instead of just expecting it?

Also--and this is a topping/hurting-specific thing I guess--in some people’s dynamic, you could even hurt someone in a way they don’t like, and that would be fine; within limits, their feelings are irrelevant to what happens. What if the way you and your partner/s do sex is that you do whatever you want and they’re expected to adjust to you?

Receiving Hurt

One of the most important qualities for a successful disabled person is the ability to bear pain quietly; and not only should you bear pain quietly, but you should bear pain quietly, quietly. The most perfect disabled person receives emotional and physical discomfort and pain with a complete poker face, and this is in the service of a goal: appearing to experience the same amount of pain as non-disabled people, and for the same reasons. Which is to say that the most perfect disabled person appears non-disabled and is not admired by anyone for her stoicism because, if she’s doing it right, no one knows she has anything to be stoic about. If you’re disabled, you deserve to have pain as an invisible constant force in your life, and you deserve it so much it’s not even worth mentioning.

While I’m at it I should mention that some disabled people don’t know what we want, or what hurts us, or what harms us. This can be because of cognitive and language aspects of our disabilities (not being able to sense we’re in pain, or articulate it), or because we have chronic pain and become inured to the sensation, or because people are always telling us what a normal person would be feeling or wanting in our situation, or a combination of those things.

What does it mean to say that you want pain, when you’ve spent your whole life pretending pain doesn’t exist because the expression of pain is so horrifying to people? What does it mean to be able to tell someone that you are or were in pain without this being something that makes them either pity you, or resent you because they see you as lying or exaggerating your pain to get pity?

What does it mean if someone actually enjoys your reaction to being in pain, and wants you to say and show them that you’re in pain? Conversely, what does it mean if you can be very stoic about pain, and someone actually appreciates that about you and sees it as a special skill, instead of a prerequisite for being respected as a decent and competent person?

Also, what does it mean to have it actually be important and expected that you try to figure out what level of hurt is harm, and what your limits are? What does it mean to have a word that means “this isn’t okay it has to stop,” and the other person’s actually supposed to listen?

(I just realized that I was using the word pain instead of hurt for this whole section. I still meant it in the broadest possible way.)

Dominance

In The Classic Disability Catch-22, I wrote that in order to be seen as the kind of disabled person who deserves to be successful, you must make it appear as though there’s nothing you can’t do. This means that you have to perform beyond your means, damaging yourself in the process, and/or lie and trick people into thinking you’re doing things you’re not actually doing. Because of the dishonesty and recklessness involved in fulfilling this requirement, no one who is perceived as belonging to this elite class of disabled people actually feels secure as a member of that class. This is Failure Theory. Of course, people who aren’t perceived as belonging to that class of disabled people have it a lot worse; they have shown the wrong kinds of weakness and impairment, and barring some extraordinary feat of illusion or strength, they will not be seen as deserving the support or acceptance they need to achieve their goals.

There’s also the issue of “body language” and what that means about your sense of power, authority, and control in the real world. If you look disabled, you look like prey. You may look, to some people, like you shouldn’t be out on your own. Your eye gaze or the way you speak may cause people to read you as shifty, incompetent, frightened, or shy--and given the way people read you, you probably do feel shifty, frightened, and shy, and may be beginning to wonder if you are incompetent.

You may be told that in order to deserve respect, or to be seen as a competent or smart or secure person, you have to have the ability to speak in a certain way and look at people in a certain way; or, as discussed in the “receiving hurt” section, you may have to be able to be stoic about things that you simply can’t be stoic about.

When someone decides to submit to a person who is stuck on one side or the other of the Classic Disability Catch-22, is regularly mistaken for a child, starts crying on the subway, needs help getting dressed, can’t speak loudly enough to be heard by most people, etc. etc. etc., this is a dissolution of standards about what kind of person is supposed to be allowed to have authority and control, whether by the standards of society or by the person’s own standards (in the case of people who are read as non-disabled or successful disabled people, but suffer from Failure Theory).

Submission

Obviously submission doesn’t have to do with whether someone is “weak” in a pervasive sense, but for a lot of people being submissive involves doing and saying things that are associated culturally with weakness and vulnerability. It also sometimes involves letting go of control and doing what someone else says.

So if you’re in a position, in real life, where you have a chance to be successful only as long as you never show weakness, then what does it mean to be able to express weakness with someone and not be destroyed by it? To have someone actually like and enjoy that part of you, and want to see it, and still respect you when they see it? On the other hand, if your real life position is one of being fucked over because you’re read as weak or because there are things you can’t do--again, what does it mean to express weakness or inabilities to someone and have them think it’s cool, and have them respect you regardless?

Performing weakness, or allowing yourself to sincerely experience weakness, is an act that is comparable to the act of deciding to hurt someone. It involves a similar controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.

I find it astoundingly privileged when anti-s/m people talk about how, for example, doing power exchange is “bringing in” all these terrible things from the outside world into your relationship. When you’re disabled, lack of power is such a huge part of who you are that it’s hard to imagine that not being a part of any relationship you have. So, like, that would be really cool to be worrying about “bringing in a hierarchy” or “bringing in brokenness” into a relationship. It sounds like a charmed life.

I haven’t come across much discussion of the s/m and disability intersection; staticnonsense’s Kinky Disability posts, which I love, are really one of the only attempts to address the issue that I have seen on any disability blog. Before the Disability Internet, of course, there was Bob Flanagan, but I haven’t done enough research to know if he was part of any kind of movement. I feel nervous about posting this because it is so long and I haven’t really written about any kind of sexuality before, but I just think this intersection is a really fascinating one and worth talking about.

from June 2009

[I found this on my old livejournal, it's quite different from how I feel about things now but I thought it might be interesting.]

Liz called me yesterday because she was bored.

I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.

Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.

So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.

Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.

cassie ainsworth & redemption rejection

this is just some Skins gibbering, mostly character- and not plot-based, which I think is interesting in terms of ideas of covering (or "disability redemption").



me: that was me being a bitch like oh wow but fuck you style
have I mentioned that's like my favorite line ever?
Joshua: haha, it's a good moment. I dunno Jal is being kind of patronising, and though she never deserved to be the target of evil Cassie, you can see why that would hit Cassie's angry spot!
me: like, it sort of reminds me of having to act really cute to make up for being disabled
Joshua: nice interpretation
me: that's what "oh wow but fuck you" means to me.
Joshua: and like.. even more charitable to S2 Cassie than I usually am.. which is very charitable.
me: oh I mean, I don't necessarily mean that's what she means. it's just sort of what it means to me. Like, I think she just says oh wow because she always says it, and then she gets to the actual content of what she's saying, which is fuck you. But to me like oh wow is a very important line, even though people act like it's stupid and annoying, it means something really important.
me: I remember once telling Ari that I liked working with severely disabled people because lots of the people I worked with hugged everyone they met, and for some reason I'd observed this was more common in adults than kids with similar disabilities
Joshua: like they feel they have to be like that?
me: and Ari suggested that some people are very isolated and it's like "oh wow a person! I never get to interact with a person!" He said something like, "I hope the next generation of pwds can decide that they're not particularly interested in someone or they don't like them"
I think this is interesting in terms of how Cassie is introduced in the first episode. I haven't seen it in a while, but I think she hugs tony, possibly hugs sid, and then hugs abigail--"YOU'RE SO LOVELY!!!"
the plot thickens!
then obviously throughout the season there's the constant "oh wow" and manic pixie dream girl reactions to everything--coupled with starving, suicide attempts which often seem in her cases to be engineered to hurt people or cause as much trouble as possible, and occasional moments of being pretty mean or pissed off.
me: I am sort of getting this from you because I remembered when you said that Cassie doesn't really change from s1-s2, not in a deep way.
Joshua: No she really doesn't.
me: yeah so in conclusion, the line "Oh wow, but fuck you" line means a lot to me because it's almost like Cassie sort of rejecting the things that she previously did to try to "earn" people's friendship and support.
Joshua: Cassie would not mean nearly as much to me without s2 as much as I love S1 Cassie. If she'd been left at that without the contrast of S2 she'd be a standard Manic Pixie Dream and a fairly borderline offensive idealised picture of mental illness.

Confession

I'm twenty-two. A million years ago, when I was twenty, I wrote that I was like a mosaic that was always working on itself to make its squares smaller and smaller so the picture could be more detailed. I guess in this metaphor everyone else was like some really high-definition photograph and as much as I worked I couldn't get to their level of complexity because I was made by trial and error instead of nature. There was always something about me that wasn't as fluid or as soft or sharp.

If you're wondering what kind of human being would say something like that about themselves, I actually don't know because I am not like that anymore and it really does feel like a million years ago.

I have bad brains, probably the worst ever. Sometimes my bad brains shoot out horrible things like a geyser of shit and other times they just stall and wait around in the same circles. Most of the time the shit geyser and the stalling and waiting just combine themselves and feed off each other. It's pretty impressive that I manage to get anything done around here. I mean, frequently I don't, and I would never say that my bad brains are a thing of beauty and a joy forever, but I have come to some conclusions about them.

They are my brains, so I love them as much as I can.

I am not worth less than people who don't have bad brains. I'm also not better than people who are less able to get around their bad brains than I am.

I'm not obliged to trick other people into thinking that I don't have bad brains.

I love my bad brains because they are the apparatus I experience Creation through right now.

Back when I was a mosaic and not an unrepentant bad brains, I never knew how horrible things would be when I started experiencing them for real. But I didn't know how safe I would feel and how much I would love people, either.

some Autistic Passing Project rough-drafting, help please!

I'm getting together the questions for my passing project survey, and was wondering if anyone had any ideas for how to organize the questions or write them more clearly. My plan is to ask questions fairly broadly and loosely, but these are some areas I'm thinking of covering. (See the possible passing project tag for some posts I wrote when I was originally thinking up this project.)

1. Did you start passing on purpose? If so, when and how did you make the decision?

2. What are some things about you that might give you away, which you're very conscious of? Do you feel something's wrong with your voice? The way you walk? The way you hold your hands? The words you use? Your history?

3. If you are still passing (to some extent, in certain environments, or all the time) can you explain your reasons for doing so? What would be the consequences of not passing?

4. If you belong to one or more other minority groups (I'll probably include a list of examples of what this could mean), does this have anything to do with how and why you started passing? For example, did you feel that belonging to one minority was isolating enough without also being on the autism spectrum? Did you feel that people might be convinced to accept one, but not more than one? Is this because of the number of minority identities, or because some minority identities might be more easily accepted than others?

5. If you belong to a minority group which you don't or can't hide your membership in, do you think this affects your ability to pass? An example would be a passing Autistic person who is the only black student in his high school, who starts to be stereotyped as "the black student," and therefore is less likely to be read as Autistic. Or maybe he becomes highly visible because he is the only black student, and must work harder to pass. Etc.

6. Have you ever made yourself more visibly different in order to pass? For example, you might dress in an unusual way to distract from the more subtle ways in which you are different. Or, you might try to take on a class clown or subcultural persona so that everything about you that is different will be perceived as part of that persona.

7. Have you ever made yourself more visibly normal in order to pass? What did you do?

8. This question sounds like a bad poem, but bear with me. Have you ever felt attracted to the idea of becoming more visibly different? For example, did you want to injure yourself in a way that would change your appearance? Did you want to tell a dramatic lie about yourself, get a lot of body modifications, or drastically change your weight? Etc.

9. Have you ever had someone notice signs of your autism, but interpret it as indicating something unrelated to autism? For example, have people interpreted you as being drunk or high when you're not, or being upset when you're not? How does this make you feel? Have you ever used these assumptions as part of your passing system?

10. Have you ever been in a situation where someone else was seen as disabled, or as being on the spectrum in particular, but you were assumed to be "normal"? For example if you were a counselor at a summer camp for kids with autism, and the counselor culture assumed that none of the counselors had autism. Or if you're a relative of a more visibly or severely disabled person, and people put you in the position of "non-disabled relative of a disabled person." Or if you're taking a psychology, education, or disability studies course where you talk about people with developmental disabilities, with the assumption that no one in the class has such a disability. Is this upsetting for you in any way? On the other hand, does it make you feel more secure about your ability to pass because someone else is taking the attention off you? Do you ever put yourself in these situations on purpose, because you can pass better?

11. Do you ever say no to things you want to do, because you are passing? If so, what are some of those things?

12. Do you ever limit potential friendships or relationships, because you are passing? For example, being reluctant to spend a whole day with someone you really like, because you know you couldn't act normal for a whole day.

13. What do you think other people's reactions to you are? This question covers both what you think intellectually, and what you feel. For example, someone might feel that everyone is judging them and thinks they're a loser, when they know that's actually not true.

14. How do you feel about sexual and romantic acts (including solitary acts like masturbation, and non-genital acts like kissing, holding hands, and roleplaying)? How do you feel about sexual and romantic relationships?

15. How do you feel about food?

16. How do you feel about self-injury, and injury/pain in general (for example, getting in a fistfight, getting shots, or going to the dentist)?

17. How much do you feel depressed or experience anxiety or dissociation (feelings that aspects of your life aren't real or that you are someone else)? If you experience those things, what does it feel like?

18. Have you ever been in a "covering" situation--that is, a situation where everyone knows you're on the autism spectrum, but you still have to perform. For example, you might have to act in a certain way to offset people's expectations about what someone with autism is like. Or you might have to express gratitude for being given a particular job, friendship, relationship, etc., despite your autism.

19. Do you identify as disabled? Do you identify as A/autistic? Why or why not? What do you think it would mean (or does mean) for you to identify with either or both of those terms?

20. Have you ever been told, by a professional or someone else, that you have recovered from your autism or that you don't have autism anymore?

21. Do you feel like something is wrong with your face? Why or why not?

I find myself thinking that I should cut up these questions into thematic clusters of very short specific questions, because these questions seem very overwhelming to me the way they're written now and I can imagine people would have trouble answering them. Also...they're such leading questions a lot of them. But it's not a scientific study so I don't know if I really feel that bad about that.

Also (semi-related) I made a formspring which I feel like might make me more accessible both for people who are taking the survey, and in general. I made that big post about how I wanted to get in contact with people and then I actually get overwhelmed by or forget some of the emails I receive, so this might be a better way to do that because I can answer people more impulsively and not have to remember for a long period of time.

safety is not the worst

Since I haven't been posting that much I figured a desire to say anything is probably a good one even though this isn't related to disability (on the surface). It's sort of hard to remember being this enraged gay person to whom everything was really cut and dry, and I think some of my beliefs were wrongheaded but I also find them important. I was talking to a friend about high school the other day and I just found myself kind of buried in my old trains of thought.

Brief background (embarrassing to even talk about): I came out as questioning to my parents when I was 10, came out as bisexual when I was 13, came out as gay when I was 16 and that's when the realizations were occurring to me. But this doesn't actually line up with what I was identified as at school. When I started high school I found myself in an environment that was much less aggressive than middle school, but I was still really affected by my experiences being bullied. I was scared very easily and withdrawn from everyone but the friends I made at the very beginning of school; I could speak when I was with them. I really didn't like this about myself and because my school was so small I felt that it would be important for me to be openly queer because I thought it would make queerness more visible and acceptable to people if they knew someone who was queer. So I had a rainbow sticker on my notebook and when I was in ninth grade (when I was 14) a girl asked me if I was gay and I said yes. I didn't identify as gay at the time but I thought it was a simpler way to answer than saying I was bisexual (remember, trouble talking).

Over the course of ninth grade I spent a lot of time with Joan, a girl who wasn't very popular, and we were semi-dating for a little while, but I think that it wouldn't have made a difference even if we hadn't been dating. My school was really small and my admission that I was gay had kind of traveled around, and I found out that kids had discussed the rainbow button on my backpack, and discussed whether I was dating Joan. Joan would get really angry at me for hugging my female friends in public, following her around in an obsessive way, or saying in public that I thought girls were attractive, because she said I was making things worse for her. We stopped "dating" pretty soon for various reasons, but everyone still thought we were dating.

In tenth grade I cut my hair short and started dressing in a boyish way, and had another kind of clingy relationship with a girl (I guess we were technically open about it, but I don't know if people thought of her as being queer; she was very quiet but not unpopular in the same way as Joan). We also went to prom together. I became withdrawn from my friends because I was on Adderall which kind of fucked up my support network for eleventh grade combined with the fact that two of my best friends moved away and my best friend and girlfriend graduated. Our relationship was pretty dumb, and she broke up with me very reasonably at the beginning of the summer, but she did it by telling me she thought she was actually straight, which sent me into a huge spiral of feeling like I was the only person in the world who was queer. For a long time I thought of that summer and the months that followed as being a really defining period in my life, because I was really depressed but channeled it well and officially quit various things (any medication prescribed to me, self-injury, letting myself withdraw or obsess over one person) that had been controlling my life.

On my first day of eleventh grade, Joan and I skipped the morning assembly as we often did to go for a walk. She told me about the training trip for the soccer team that she'd just been on, and told me that most of the people on the team spent a lot of time talking about my supposed relationship with her. It was too bad because I was a lot more clear-headed than I had ever been before, but it was kind of too late to stop this stuff from happening. I also didn't know exactly how bad it was.

~BACKGROUND IS ACTUALLY OVER~

So, there was this girl, let's call her Martha, who was starting at my school as a sophomore. I was assigned to be her mentor who would introduce her to school, and I hung out with her and her friends once that summer. She knew Joan a little because she played soccer, but I didn't really see Martha much once school started. She made a lot of friends immediately, and didn't really make an effort to hang out with me or talk to me. But bizarrely, whenever my mom picked me up from school, Martha would be standing by the car carrying on a friendly conversation with her, and she would also occasionally, out of the blue, be very friendly and familiar with me. She found my livejournal and would comment on it. She also was close with Ms. H., a teacher who was really supportive of me re: queer and disability things, and would visit Ms. H. and talk to her several afternoons a week (which Joan also did).

Martha and my mom kept talking and eventually it was decided that my parents were going to drive me to Martha's house one Friday night after school. Kind of weird since Martha and I didn't really spend time together, but whatever. Because my school was so small (and probably because of the high percentage of kids with learning and emotional disabilities) it was pretty normal for kids to wander into random classes before they started, or even while they were going on, to say hi to teachers and students. So the day I was supposed to go to Martha's house, she wandered into my Latin class and said, "I'm excited for you to come to my house, we have a lot to talk about--something we have in common." She sort of laughed at me affectionately, as she usually did.

So, I'm sure you can guess from the buildup that what Martha told me when I got to her house was that she was gay, that she had been out at her old school, but that during soccer training it became immediately obvious to her from the way people treated Joan that there was no way she could be out at school. She freaked out and confided in Joan, at soccer training. She also came out to a friend in the dorms (she lived at school) who was the person who told her, "everyone always knew Amanda was different and then when they found out she was gay they had something." And one of her other friends immediately realized Martha was gay because she saw that Martha would be friendly to me but only when certain people weren't watching.

I guess I hadn't been--well, I had kind of known, but I hadn't really been sure if I was really The Gay Person At My School or not. But it became obvious from the way Martha talked about talking to me, that it was what defined me and that it was a reason for people not to talk to me. After that night at her house, we became good Internet friends but would barely talk at school, which she'd always pretend I was imagining. I was trying not to obsess over people, and I was starting to get really depressed and obsessive about our friendship, so I kind of detached myself from her. I really, really hated her in a way, even though I also liked talking to her and spending time with her.

I just remember that being gay felt really cold to me then. Like, I associated it with this almost physical sense of coldness, of wanting to drown, of drowning, of picking up things from the sidewalk and having to put them in my pocket because I'd have them, because I needed to have them. I kind of just thought that's what being gay was.

Anyway, I remember realizing, that night and the next day, that my mom of course had known about Martha being gay and had been talking to Martha's mom on the phone a lot about Martha being gay and other issues; that Joan, my only good friend remaining at school, had known Martha was gay; that Ms. H. knew; and that even though Joan and my mom presumably should have some kind of loyalty to me, and they'd known that I was really really isolated and lonely, they hadn't told me that there was another gay person at school, because it wouldn't be fair to Martha to tell.

And it all came down to this thing Martha said to me at her house on the Friday night: "Amanda, if you only knew how many people there are who really want to talk to you and be friends with you, but are just scared to--"

"Really? Like, who?"

"Well, it wouldn't be right to tell you. It's not fair to them."

Gosh, I'm sorry, and I don't know if this is coming out clear, but I remember that at that age I read Lockpick Pornography and I just took it completely straight. And I just remember this feeling that I was being used as a bulletproof vest for Martha and whoever these other people were.

Martha had this secret greatestjournal (I know, we're old, greatestjournal doesn't exist anymore) where she would pour out everything she was feeling about being closeted at school and how hard it was for her. I read it and I cared but I also would see her walking around school with her friends, when I didn't have any friends, and I'd feel like crying that she got to be close to people, and I'd just want her to shut up about her stupid problem of being safe.

Sometimes I just feel like I have nothing in common with people who were closeted in high school, or passed for some reason or another. It's not exactly the same as being radical--that seems like saying queerness is universal when that's the opposite of what I mean. For me, especially when I was in high school or very closely out of high school (a year or two) it just felt like, this is MINE. You can't have it, you can't fuzz it up, you can't make it different, you can't say it belongs to everyone, because I was by myself. I was like a warning.

So if you're going to take me as a warning (I felt) of what not to be like, you don't get to just turn around years later, or when you're alone, and say that you really are like me after all, that we're the same inside. You are NOT like me. We are not the same. Outsides fucking matter.

...Can someone tell me what I'm feeling or what I mean, by spending the last few hours typing this up?

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.

The Classic Disability Catch-22

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

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

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

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

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

The Classic Disability Catch-22

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

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

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

Thoughts?

people you want to hide vs. people who actually don't exist

Several years ago I remember reading a New Yorker piece by one of the Autism Pop Culture kids--John Elder Robison maybe? Whoever he was, he said something about having had to create his personality from scratch, instead of naturally having one. And I was like, "yeah totally this is such a good description of what ASD is like! I can relate to this better than anything else I've ever read!"

Whereas now I'm kind of like...seriously?

It's weird to say this because a few years ago I don't think there was anything I hated more than people saying, "Just be yourself," or, "Just act however you feel." But that's what I try to do now.

Obviously there are areas in which this totally doesn't work--of course there are things I have a lot of anxiety about, or can't learn how to do with any ease, and there's definitely an element of forcing myself to do things or trying to imitate how someone else would do them. But there's a difference between consciously going against your nature, or trying to play make-believe with yourself, in order to deal with something, and just playing a part all the time. I think there were some times when people would say, "Just be yourself," in a way that was super disrespectful of who I am; it was like, "Don't react to things in a way that I wouldn't react to them, because to me your reactions look unnatural." But the fact that I used to find "Just be yourself" to be the most ridiculous thing for anyone to say to me, ever, is now kind of hard for me to relate to.

Like 14 months ago, I made this post called I'm a fake person, and in the process of writing it--well, I knew everything that was in it, but actually writing it down made me incredibly depressed. There was just this fact inside me all the time, that I was fake, and I just tried to avoid thinking about it. But now I just don't feel like that thing is there anymore. (The trans aspect of that post is really weird. I think at that time I actually thought that being trans would make me happier than being cis, but that it just wouldn't be practical for me to transition...but now I, like, actually feel like a girl, in an uncomplicated way, which has never been the case before. So maybe feeling "I'm not a girl," for me, was just a way of feeling something else that I don't have to feel anymore, but I don't know.)

I'm not trying to say that everything is baller and in fact some stuff is much, much worse since I stopped being a fake person, but I do prefer life this way. And I know I'm not going very much into detail about what being "real" or not having a made-up personality means to me, but it's complicated and it may not even look that different superficially. It just feels incredibly different inside.

Anyway, where I was going with this was probably toward the idea of people being empty or being nothing or having nothing to them, because they're different or because they can't do the things other people can do. I think it's really important to acknowledge the difference between having a self that's not socially acceptable, and actually really not having a self at all. Even if your self does have to change or fake or learn a lot of things, or even if it never is accepted by other people, it does really exist.

It's also important to acknowledge the human being/human doing divide, i.e. the difference between not being able to do something, and not being something. For example, if you can't talk on the phone, and then, through scripting and imitating other people, you become able to talk on the phone--your old self wasn't a nothing that has been replaced by an improved, fake self that can talk on the phone. Your old self was just someone who couldn't talk on the phone.

Failure Theory

If queer theory is seeing that everything is sort of queer, then failure theory is seeing that we are all failures in our own way. If you have a disability and everyone is always saying how mild it is, or if they don't see you as disabled at all, then there is a strong sense of being a failure if you can't live up to the person they read you as. Alternately, if people think you are helpless and try to control you, then you'll feel like you have to prove yourself perfectly competent--which of course no one is. Sometimes one person has both of these experiences. Either way there's a constant sense: I can't do that, I'd be a failure. Or I already am but people will know. I'll be proving them right/disappointing them. If I am a failure (and being a failure can be as easy as failing one class in college, or using a cane, or not being able to drive) then my life is not worth living.

I actually can drive and I've never failed a class (and I'm not mobility impaired so the cane thing isn't applicable). But I'm a failure. I can feel it when I wake up in the morning. I can feel it in my throat and my ears and eyelids. I've known I am a failure for maybe ten years.

Constantly I feel I am wasting resources, devouring my friends, taking time. I know from other failures that this will always be true. I could become president and still be a failure. Failure is just who I am.

Fuck yeah failure?

Sure.

I don't know much about crip theory but the name sounds like I'm not included--which is fine. I think there are different kinds of disability experience and this one belongs to me and some other people.

late night germs

I got this weird comment on a really old YouTube video called "More about Asperger's and looking normal." Sometimes I get comments where I think English isn't their first language, or maybe it's just related to their disability, but either way the person seems to just be responding to things like the title of the video or some random word mentioned in the video, and just saying how they feel about that thing. I certainly don't mind this or anything, it's a lot less annoying than people who will do shit like getting in an argument with me over whether I really have ASD, based on some line that they willfully misinterpreted in the video.

Anyway, this video is actually just documenting the beginning of my realization that I didn't need to try to play a role to cover for being different, and explaining that I had come to this conclusion by meeting people with severe disabilities and realizing that a lot of them they were pretty cool, and if the scariest thing I could think of was that I might look sort of like them if I wasn't careful, I had a pretty good life.

But this guy's comment is about how he has Asperger's and he looks normal and he wants to date a girl with Asperger's who is pretty and looks normal. When I saw this comment and saw what the word normal meant to this guy--obviously something very innocent, unless I misread it--I felt like maybe I overdo the whole "I don't look normal and I don't want to look normal" thing. Because for some people normal just kind of means good or whatever. Sometimes I even use it that way. ("I'm sorry I'm being so annoying." "No, you're totally normal.")

But I really don't like to be told I look normal. Is that normal?

I think for me being told I look normal is like--well, it's not good because it feels like I'm not being given any space. Like just because I look a certain way to you right now doesn't mean I always will. Maybe someday I will look less normal. I want room to react and move the way that feels right. This means that for me it's nice to think of myself as "looking disabled." This doesn't mean that I have to always or even sometimes look like someone that other people can easily recognize as disabled. I'm disabled so by definition I look disabled, since I look like myself. If I think of myself as "looking normal," then it's only sometimes true. Or it's a feeling instead of just being.

Disabled Staff Person

I think I've mostly written about being a DSP in terms of identity and also aspects of disability that aren't related to impairment, like movement--basically that it is disorienting to always be assumed to be non-disabled or be someone who moves/acts normally because you are staff, especially but not only when staff have an insulting or patronizing attitude toward the people they work for and expect you to share in that.

However, there's obviously something else that makes a DSP different from other staff people, and that is impairment. While I do think the assumption that staff people are non-disabled often comes from just general...um, ablenormativity? is there a word for that?...there's also a more solid reason for that assumption, and that is that staff are supposed to be helping people do things they can't do on their own. So, if you are a DSP (unless your disability is absolutely unrelated to your client's disability, like you have paraplegia and they have schizophrenia) you may sometimes be in the position of being expected to help someone do something that it's hard for you yourself to do without help.

Which kind of begs the question: are DSPs good staff people (assuming there is some impairment overlap between staff and client)? Should DSPs be staff people?

Well, let's try to think first of all what it means to be staff. Let's say there are two kinds of staff: staff and aides. I tend to think you should think of yourself as an aide (it's a word I prefer but I'm not sure if I deserve it). To me the relationship between staff and client is that the staff person has authority, usually because they work for someone else more powerful, and they try to get the client to follow rules. The relationship between aide and client is that the aide's job is to help the client do things that they need or want to do. Depending on the impairment, like if it involves memory problems, an aide might say something that sounds staff-y like, "Hey John, it's time to take a shower," but there will be a different motivation and the aide and John will have discussed when John wants to be reminded to take a shower.

I think impairment matters more if you are an aide. Since staff/client is mostly about staff making clients follow rules, a lot of the things the staff has to do are pretty random and have nothing to do with impairment. In some cases, you could actually switch the client with the staff and the client could perform the staff's job pretty well. For example, at the summer camp where I worked it was a rule that campers (who were mostly adults with intellectual disabilities) couldn't serve themselves at meals. Obviously some people actually did need help serving themselves, but mostly I was sitting at a table asking a bunch of people if they wanted carrots who, if not for the rule, could have just gotten some carrots themselves. And this completely artificial rule added all these dimensions to my relationship with the campers at my table, which was weird.

There's also the fact that having a good relationship with clients becomes more important if you are staff. If John and his aide Sarah don't particularly like each other, it's not any bigger a deal than someone not liking one of their coworkers. They can just be polite to each other because they're both getting what they want (Sarah is getting paid for doing her job, John is getting support he needs). But if Sarah is staff--i.e. she has to get John up at seven every morning to ride in a van to the sheltered workshop--you'd better hope the two of them are really close because John is likely to be pissed off at her a lot of the time.

No one does their job right all the time, so I feel like the measure of whether someone's good at their job is just whether they're good at the majority of the things they're required to do. Let's say I'm an aide for someone who constantly forgets what they're doing from one minute to the next. I've mentioned how extremely difficult this is for me because, well, that's what I'm like except I guess I'm slightly above the line where I get staff for it. I am going to suck at helping this person dress, shower, etc.--if I'm this person's aide I'm basically going to suck at my entire job. (I also know from past experience that I start resenting the fact that if the person doesn't get dressed etc., that is considered to be my fault not theirs, whereas in my own life if I don't get dressed etc., that is considered to be my fault too; and stuff like that.)

However! If I'm this person's staff person, I could be great at my job. I can do a bunch of random easy stuff that my employer inexplicably requires me to do instead of letting the client do it. I also--and yes I feel very creepy saying this--am very good at convincing "non-compliant" people to do stuff, and calming down people who are upset. So my success rate at doing the tasks required of me suddenly goes up from, say, 50% to 90%, in the change from aide to staff person. I become competent, for some very dumb reasons, and at the cost of someone else's freedom.

I think it's very important to explore these facts because there is not very much writing about being a disabled staff person (let's include any kind of figure who offers support and can abuse power--teacher, psychologist, etc.) for disabled people. I have to figure this out for myself. And I think just as non-disabled people assume all staff are non-disabled, it seems like disabled people kind of do too when setting up the staff/disabled relationship as simply oppressor/oppressed.

So let's be clean about this.

1. I don't know why non-disabled people choose to become staff. Maybe they think it will be easy because they have someone disabled in their family who they get along with. Maybe they do it out of charity. Maybe they just think it's fun. Maybe they couldn't find another job.

2. I decided to be staff because I am disabled and it seemed like the only safe option. If I work in environments where no one is disabled, then I end up feeling under a lot of pressure to pass and I feel depressed and isolated, and end up experiencing the whole dissociation and self-injury swarm of awesomeness. I'm also not good at a lot of normal jobs because I can be very slow and don't think about big systems very well. Being staff not only frees me from a lot of these problems, but often provides me with the experience of getting to be around other disabled people, which makes me calmer and happier. I don't feel that I have another choice but to do this kind of job.

3. But it's very, very important for me to think about the ways that my attempts to protect and look after myself can damage other people. I wrote a post addressing some semi-related issues a long time ago--mostly about how I prefer working in segregated environments. Now I find myself thinking about how I prefer (for myself, if I resolutely ignore how it affects other people, which I can't) being a staff person rather than an aide.

So where does all that leave me?

I think there are two directions I can go in. One is to practically accept that I could easily contribute to fucked-up situations (either contributing to oppression by being staff, or contributing to someone's life being a little worse by being a subpar aide), and to decide that I will always avoid those situations by:
    a. being an aide for someone whose support needs are primarily physical, emotional, and/or communicative, rather than cognitive
    b. being staff (i.e. an authority figure) in an environment where I don't think it's wrong for me to have authority--for example, working with kids instead of adults

The other direction is to argue that maybe I actually am a good aide for people who have my kind of impairments, even though I suck at some stuff, because I have more rapport with them and am good in emergencies or something, and that that should outweigh my drawbacks. But I don't know if those things do outweigh them. Emergencies don't happen enough to really become the kind of task that can change your success percentage from 50% to 90%. And like I said--although I wouldn't want to be an aide for someone I didn't click with, and wouldn't keep a job like that for long--I think that getting along with clients is awesome but it should not be part of the job because if you need to use your bond to get them to do something, then there's something wrong with the job. So I will go with the first option.

Next year I'm planning to work as a school aide for kids with disabilities (don't get confused by the terminology, this is a staff person job), and I may keep doing that for a while to get my head straight and figure out what else is okay for me to do. Before you ask, "But Amanda, why don't you just apply to a place that gives people aides, and tell them that you have a disability and you need these kinds of clients, or if you have clients who have certain kinds of impairments, you can only work with them on certain things?" I'd like to remind you that this blog is not a comedy club.

10a. input vs. output

(Even when you just stay on body language. In my experience it is much more likely to get rejected for your own body language/facial expression/tone--other people read you as a normal person who is sketchy/offensive, or read you as an "other" that they find undesirable, such as disabled/"weird." It actually takes a while to judge how someone else is responding to the way you move and sound--judging the way someone else moves and sounds is much faster. A lot of people with autism could drill themselves forever on how to read other people, and still would regularly get rejected because they haven't changed their own body language.)

Autistics Speaking Day post

The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:

One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."

"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.

This kind of attitude from parents and professionals makes me want to scream.

I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.

A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.

People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:

1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."

2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.

3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.

4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.

5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.

6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.