Annie

(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.

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

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

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

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

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

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

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

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

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

I was going to make a post saying that I'm trying to give up this blog for Lent again, but I know that it's ridiculous to say this is about Lent, because giving up this blog is really the opposite of what I should be doing in terms of God. Out of my usual perverse avoidance of the medical model, I'm going to avoid saying that disability and anti-ableism is my special interest, and say that it's the thing I am called to right now.

When I am called to something it's the thing my mind always returns to. It becomes very hard to focus on other things. This is obviously problematic because I am in school.

Last time I went to church the sermon was about the lillies of the field and the pastor, I thought, impressively TMIed the congregation by saying that his marriage had fallen apart but that God was there to look after him. Unfortunately, I guess I do not feel this way. I cannot feel safe in God's hands, because if I do not graduate from college that would not be okay. I know the way my mind is going, it's very difficult to do anything. I try to avoid writing here when I feel called to do so, because I know that it will keep me from doing other things. So I walk around with notebooks full of very long pieces of writing about exactly the kind of thing I write about here, because even when I don't allow myself to actually write here, it is always the core of me. I really don't know what to do with this. I know that the core of me needs to be, if nothing else, my independent fiction project. But it's hard for me to be as interested in that project as I am in all of this.

Sorry to go on about this here.

When I really think about it, I know that graduating doesn't really matter, not just in the grand scheme of things, but in the specific. I don't even have plans for my life that heavily depend upon having a college education. At the same time, I can't help but feel that if I didn't graduate, it would not be okay. I would not be okay if I couldn't succeed in this particular way.

But I wake up and do nothing because there is so much I am not called to do and it's so hard to move toward it and I get trapped in nothingness, not even writing here, because everything starts moving too slow and too fast at the same time. I don't know if this is making sense. Basically, I know on the one hand I should write more because I know not as many people are reading this any more and I also feel strongly that it's the most important thing I do even though in the eyes of a lot of people it wouldn't be important at all--but the people I most care about I guess are the people to whom this kind of writing is important. I feel like I'm throwing something away here. But I know I have to leave, so I can do what I think is okay instead of what I think is right. And yes I know this is a very dramatic way to say, "I'm trying to write in my blog less so I can focus on school more."

But I have a slow nature and this kind of transferring my mind from one thing to another feels really miserable. Especially because right now I feel so confused about the right thing to do and I feel like I'm trading in a sense of purpose for colorlessness.

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.

religion, queerness, disability, background, and consent

I was at my college's queer/faith group today and felt kind of bad because I said something like, "I'm not from a religious background and I came to God through being queer so it's really weird for me when people see gay + Christian and imagine that I have some sort of conflict or that this has caused trauma for me." (Or even imagine that I realized those things in the opposite order from when I actually did.)

This seems really privileged as if I think that the reason people see gay + Christian and associate that with a really terrible set of experiences is just some anti-religion bias. I mean, the people who've said this to me are atheists so I do feel a little bit like they're stereotyping Christianity and religion in general and failing to understand that at its core there's nothing that would inherently be my enemy as a queer person. And I kind of like expressing how much that isn't my experience because my type of experience is so rarely expressed.

At the same time, it's a very rare experience. I grew up with liberal atheist parents and I go to a college that is primarily liberal atheist--that is a tremendous privilege for a gay person. So for me to be like, "Yeah, God and I are buddies, why wouldn't we be?" is kind of a dick move. It's actually kind of like the way I feel about queer people who have overcome certain things, that I can't overcome as easily due to being disabled, and act like all queer people can overcome those things.

I know a lot of people's experience is one of religion being forced on them. But mine is one of being expected not to be religious and even feeling uncomfortable as a religious person in the spaces I tend to be in, and once having someone compare the fact that I believe in God to unusual stuff I do that's related to my disability. Which is really not cool.

This also applies to disability. My disability has been (cognitively and emotionally) a huge barrier to my ability to participate in things like church--largely because church is unfamiliar. So I'm very jealous of my liberal atheist and otherwise non-Christian* friends who had a sort of upbringing where they were brought to church, confirmed, etc., and the fact that they went away from that wasn't such a big deal to their families but it was just kind of how they did things as they were growing up. Because that structure would have been really important and my life would be totally different if I'd had it. I'm really lucky that my dad is as supportive as he is or I would never have (finally) been baptized and would have even less experience going to church than I do.

*(not that atheist=non-Christian but I'm thinking of people who are agnostic or "spiritual but not religious"--not people who have converted to another religion or heavily identify as anything.)

When I was a kid I had a babysitter who was Catholic and would pray with me when she put me to bed, against my parents' wishes. I'm extremely grateful for this because it gave me familiarity with prayer and the knowledge that it was an option. I still pray the way she taught me, every night. But I know what most atheists, and even many Christians, would think of her decision. And I don't know how to reconcile that with my gratitude.

I'm looking for a job next year and I'm interested in a particular facility for kids and teenagers with disabilities, which is Christian. It would be really wonderful for me to work in an environment that's Christian and I do relate being staff to being Christian (I don't mean this the way it probably sounds, but it's a huge other thing to talk about--it has nothing to do with me being better than the people I serve). But I feel creeped out also because, while they write on their website that the people they serve have a choice about being Christian or going to church, religious education, etc., they use the word "encourage."

In my experience, some people with disabilities have been taught to be compliant to the extent that if you "encourage" them to do something, or even ask them if they want to do something, they perceive it as an order.

I mean, I also have known people--and actually, this doesn't just mean more severely disabled people who I've been staff for, this also includes me, and maybe this includes me more than anything in terms of religion--who have a very hard time saying they want to do something, asking to do something, even saying "yes." My camper Stephen from this summer would say no to everything, including things he had previously shown he liked; after bringing up the subject again and again, you might be able to find out whether he really didn't want to. Sometimes this didn't work and you had to put him in a position where he had to make an effort to opt out, instead of to opt in--this was generally how you found out for sure what he really wanted.

I'm not saying this in terms of the facility, because that word encourage really does bother me and I'm not applying there until I can figure out what it means. But when it comes to religion, I am a great deal like Stephen. Which is very confusing for me and which, I'm afraid, often results in me saying things that ignore the very nonconsensual and/or negative history that a lot of people from my communities have with religion.

on being grossed out

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

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

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

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

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

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

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

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

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

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

The shit thing, on the other hand.

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

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

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

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

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

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

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

Still. Life.

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

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

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

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

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

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

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

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

13. Social model of social failure

I guess this as close as I will get to an ending. I've typed up everything I can find in my notebook related to this, and written the things I had floating around.

Basically I think it's definitely true that a lot of normal people sync up with each other and come off in certain ways to each other, and then when a lot of people with autism don't sync up with normal people, or don't come off properly, the results can be very bad for the person with autism.

I don't think this relates to people with autism not having "social skills."

I don't think social skills exist. Or, if I do, I think they exist like God exists--in everyone. They just may not always be apparent. For example, I may have very good social skills when relating to other people who have disabilities, or people who are interested in the same things I'm interested in. I have much better social skills with men than I do with women. Social skills are not contained in a person--they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people--or, so that more people can have good social skills with them. It's the same thing.

Some people--disabled or not--may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. Sometimes it will be because the other person is obviously different. Such people may have good social skills when interacting with people who aren't different. But with people who are different, they will always have no social skills; and when a person who's different is with someone like that, they will "lack social skills" too. (But if they were told by a professional that they lack social skills, they won't understand the two-way nature of the failed connection.)

A person could be going through life, who can't talk, doesn't like to look at people, and is in a lot of emotional pain which they express with "challenging behaviors." This person may live in an institution where no one engages with them because the person is not judged to be interesting, or interested, or capable. One day a new person comes to the institution who is interested in the first person. They start to walk around together and sit together, even though they don't look at each other. Maybe they play games like the two kids I knew who liked to move each other's arms without looking at each other. Maybe they make noises at each other. Maybe they just physically stay near each other as much as possible. This is what life is about, and for some people, it never happens.

But it just takes people who fit each other, or learn to fit each other.

When someone is isolated or bullied, that is not all about them. Other people are bullying them and deciding not to engage them. Still other people, from a distance, in abstract, are framing the person as Someone Without Social Skills, while leaving the other people involved unmarked.

But everyone involved must have bad social skills, because they are all contributing to what is going on. Maybe we can't in the short term stop people from bullying and isolating other people, but we can in the abstract apply the social model of social failure, and stop saying that social failures deserve to be alone.

Why God won't heal amputees

(I already posted this on my tumblr, so I apologize for anyone reading it twice. I just figured since I wrote two tumblr posts on it I could combine them into one regular-length post.)

It’s funny because I think why won’t God heal amputees? is a really important question but not for the same reason the people at the website think it is.

(First of all you’re assuming that the only possible God is a God who answers prayer at least some of the time. This is obviously not true--and in fact I don’t believe in “the power of prayer” in the mainstream Christian sense, so I am not arguing completely from my own point of view--but I’ll let it go for now.)

1. Presumably you don’t think that if someone prays for something that’s obviously really bad, the fact that it doesn’t come true proves the nonexistence of God. I think most people who believe in the power of prayer wouldn’t be swayed by someone saying, “I prayed to God for my ex-boyfriend to be in a car accident and die, but it didn’t happen!”

2. Disability is part of Creation. God won’t heal amputees, and won’t heal many other PWDs, because without disability life would be really stupid and boring. Just because someone thinks they should be non-disabled doesn’t mean they should be, anymore than someone who thinks their ex-boyfriend should die in a car accident is actually right.

The End.

some other responses: The Thinker
Wheelie Catholic (who also points out how offensive the whole website is to PWDs)

And, also:

when I was a kid, I used to have this book Always Wear Clean Underwear, which I think my parents got me because they were atheists but I was really interested in religion which they weren’t super happy about, but I think they got accustomed to it and realized they should try to make me be the kind of religious person that atheists can still get along with. So they gave me this book which was written by a rabbi and mentioned God and praying a little bit, but was mostly just a funny book about how to be a good person.

There was one part in the book where he described hell as being a place where a bunch of hungry people are sitting around a table piled high with delicious food, but when they reach out and pick up the food, their arms won’t bring it back to their mouths. Then he described heaven the same way. Since you are not eleven years old, I bet you can figure out the surprise ending: in heaven, everyone feeds each other. I know this is cheesy but I like it.

I think this also applies to our regular, pre-afterlife life, and can pretty easily be related to the question that atheists think is going to really stump religious people: “But are you saying that GOD CREATED DISABLED PEOPLE?? HOW COULD THAT POSSIBLY BE TRUE??”

Okay guys, let’s think about this. Disability is socially constructed. “Socially constructed” doesn’t mean that disability isn’t real. It’s super real. But it’s real because people who look and act different are discriminated against, and people who have different needs don’t have those needs met.

You, yourself, going around saying, “but look, if God really is so great, why did He create people who can’t do all the stuff that I think people should be able to do? Why doesn’t He cure them?”—you yourself have the power to cure all the disabilities in the world, by treating disabled people as equals and trying to help everyone get what they need, and encouraging everyone you know to do the same. You could actually be curing disabled people right now, but instead you’re making a dumb website where you try to use a cliched idea of disabled people to prove a point.

PSA: I suck at everything

So, recently lurker commented and asked me to explain how autism benefits me. I've never claimed that ASD benefits me, so I'm wondering why someone would ask this. Maybe they're really asking something else. But first, a rundown!

I'm Not Special, You Guys

1. ACADEMICS! I'm not failing out of college (yet) and I have an average IQ. In terms of college I succeed in spite of ASD, not because of it; I have to fight myself every step of the way to keep my head above water. And, if you were wondering, I don't do extremely well. I guess my IQ is an ASD IQ since there is a 20-to-40-point gap between my verbal and performance IQs? But it's not really an "aptitude" since it's a pretty normal IQ.

2. WRITING AND MUSIC! Admittedly I am a good singer and I'm good at writing music and prose. Part of the singing (not being tone-deaf and having a nice color) is just like being white or having long fingers. But obviously I've developed a style and I am precise and this is from intense interest and practice. My writing ability is from intensity too.

I think you could make an argument that these things come from ASD, since people with ASD are more likely to get deeply absorbed in things. I'm sort of reluctant to concede this because many people who don't have ASD can become deeply absorbed in things as well. I certainly wasn't born with writing ability the way I was born stimmy, or something like that.

3. FEELINGS! Even though I don't write because I have ASD, I do experience a pull towards writing that is like the pull I feel towards counting change. I'd characterize that feeling, and the satisfaction in putting things cleanly together and moving through them again (reading or playing) as an ASD feeling. This doesn't objectively benefit me at all and probably makes me write slower and linger over things that are done. However, I enjoy it a lot.

Something else subjective: I usually don't refer to myself as having synesthesia since that seems to imply something more hardcore than what I experience. But color hits me hard emotionally, and sound is accessible as visual information (not bright colors; the important thing is the shade, pattern, and edges), sometimes to an overpowering and shiveringly beautiful degree. This, and a certain stiffness and shakiness that comes out of prayer and a few other things, is my primary relationship to God. This strikes me as a DD, if not specifically ASD, sensitivity, and it's one I'm very grateful for.

Post-Rundown

Even though I love shivering and colors a lot, I don't really think they can be related to my "functioning level" or be related to whether anyone is mildly or severely affected. They are just feelings and they don't help me look after myself or produce anything. And they are the only part of my ASD that I think is good. This has always been the case. I have never made a post claiming that ASD "benefits" me.

Therefore, I don't really understand why lurker would come on here and ask me how ASD benefits me. It's kind of like if someone came up to me and asked how I liked living on Mars. I don't know what to say because the question appears to be directed at someone who is not me.

Obviously I cannot explain his reasons and maybe he will be willing to do so, but I have a theory of my own. Several months ago I wrote a post called ASD Savants/Disability Redemption in which I suggested that ASD people are expected to prove ourselves really skilled at something (and/or "not really disabled") in order to be viewed as valuable human beings. Maybe if someone has been exposed to a lot of disability-redemption rhetoric, they are so used to the equation skill=valuable=life is worth living that as soon as they hear someone with ASD claiming life is worth living, they just fill in the skill part automatically and imagine it's there.

Well, okay, public statement: ASD doesn't provide me with any skills. And...I really love being alive.

Our shrinking island

I

Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.

Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?

I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.

I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.

II

Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.

I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."

Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.

(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)

III

I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.

I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.

This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.

I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.

Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.

Church at home

When I was a kid I was afraid of the sound of flushing the toilet. I'd run out of the bathroom as fast as possible, without washing my hands. When I got older I was expected to wash my face and use an electric toothbrush but the electric toothbrush especially upset me too much.

Normally I'm okay. But the worse things get, the less I can handle the sound and feel of the electric toothbrush. Also, I find church to be very scary, as I've mentioned several times, so the worse things get, the more I become this little unhygienic person skulking around my dorm on Sunday morning, with very dirty hair and very dirty teeth (or, possibly, trying to get into the bathroom when no one else is there so I can jump around while brushing my teeth to distract myself from the toothbrush overload).

Oh right! So, because of not going to church, I was thinking maybe I'd try to write religious stuff here on Sunday. I tend to think that I was better on God stuff when I was thinking about it in on my own instead of feeling that it had to be about other people, or specifically about social structures. I almost feel like developing the idea that I had to go to church is one of the biggest mistakes I've ever made. I can probably count on all my digits the amount of times I've gone to church since I made that decision two years ago, so it's just a way of making myself feel like a failure because church is hard for me.

So:

I’m glad I’m Christian because other religions don't have room for what a major shit I am.

I believe certain things about God. Specifically: I am NOT good enough. Something needs to take me over. Terribly. Always.

It’s not about sitting around and whining about how I’m not good enough. I think of it as being a lot like disability. My sin is not a tragedy. It’s also not nothing. Something has to be done about it. God is my assistive technology.

Feelings are not real

So for some reason I was torturing myself by reading the blogs of a bunch of curebies (I know that curebies is kind of a rude word and I try to be more civil, but I don't know what else to call them). They were talking about how they think Ari Ne'eman doesn't care about individuals with severe ASD.

I disagree, and have said so in previous posts, but that's not really the point. Nothing very exciting was happening. Then, one of the people who was listing Ari's supposed views linked to another website. I clicked on the link, expecting it to be some sort of statement he'd made that had offended them.

However, it was actually this: http://www.asperger-advice.com/asperger-syndrome-behavior.html

Get it? Ari is inherently incapable of understanding other people's feelings! That's why he has the wrong opinions. Because he simply doesn't understand that other people feel bad, and if he could just understand feelings like normal people do, he would have the right opinions.

This is sort of a refreshing break from people who claim that he's not really autistic. Except, it's actually not, because it's a fucking giant piece of hateful bullshit! I should mention that this isn't really about Ari or anyone in particular. It's just a fucking terribly stupid thing to say.

I mean, first, the obvious: this isn't what the ASD "lack of empathy" is about. I don't pretend to know exactly what it is, but here are some ways of thinking about it. (I don't agree with all of these, but I'm trying to be exhaustive.)

1. people with ASD can't read other people's body language instinctively so we don't notice other people's emotions as much
2. people with ASD think about things differently from normal people so we don't have as good a sense of what to expect as they do with each other
3. people with ASD are really overwhelmed by a bunch of stuff and don't have as much energy/processing ability to spare figuring out other people's feelings and reacting to them
4. people with ASD notice things about other people, but we don't always notice the "relevant" thing (remember the Square 8 post where Bev realized that someone was upset because the person's clothes were messy, but no one else noticed because her body language seemed normal?)
5. people with ASD don't understand that other people don't all know the same things we know
6. some combination of the above

So, absolutely none of these characterizations of ASD empathy impairment have anything to do with not caring about people, or not understanding/caring that someone else is upset if you are explicitly told that they are upset. So, what the fuck is this person talking about?

Basically nothing. Basically trying to figure out another way to say that Ari (or insert name here) doesn't have a right to speak.

I'm just going to say something: I don't care about your fucking feelings. Don't you think that I, for example, also have feelings? Lots of people have feelings but only privileged people get to spend four hundred million hours talking about them. If you have a kid who fucking has seizures and bites himself, you know who everyone is supposed to feel sorry for? That's right. You. Not the person who is in actual physical pain and probably feeling terribly overloaded all the time.

People with disabilities are never expected to feel as bad as the people around us. This is why people get away with saying really fucked-up things about their disabled relatives, and even abusing or killing us. Because their feelings are such a huge deal that they totally trump the actual real things that happened to the disabled person.

The funny thing is, I actually have plenty of doom-and-gloom views about ASD and disability in general. I don't think ASD makes me special. I'd rather not have it. I think lots of other ASD people would rather not have it too. But since I'm an actual person with ASD, if I just sat around thinking about how it isn't all that great, I'd become really depressed and useless because it's my entire life and it will never not be there. (By "my entire life" I don't mean that ASD is my only notable quality--I mean that I've never lived without ASD, and I never will, unlike family members of people with ASD who claim to "have autism" or "live with autism").

So, instead of just being like "feelings feelings feelings feelings feelings," I try to look at all the interesting and meaningful aspects of having a disability, and I try to learn about and help other disabled people, and teach and be helped by them. I feel like when I do this it becomes one of the coolest parts of being alive and then I maybe understand why God made me disabled in the first place.

I sort of went off on a tangent and I apologize because I was trying to talk about the really screwed-up "you just think that because you don't have empathy" tack. But this just makes me so upset because it seems to tap into the whole thing about how important feelings (usually non-disabled people's feelings) supposedly are. I'm sure Ari has feelings too, but he doesn't feel the need to spew them all over the place like you do, and he has the grace to say "I disagree with you" instead of "People who don't have autism are incapable of understanding logic," or whatever.

this is a transcript, obviously

Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."

Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.

So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.

Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]

...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...

I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.

I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.

I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."

I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.

But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.

Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?

But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?

I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.

He was smiling through his own personal hell

So I remembered all my terribly abandoned plans about Lent, and I still stand by my decision to start writing here again, but my plan to think more seriously about God hasn't really happened as much as I'd like. So I'm going to try to write something that is to some extent--hopefully--about morality.

I think goodness is hard for me to understand. I've said this before and I'll illustrate with a story that is, in retrospect, really funny. Also I'm going to use fake names because it makes me feel special. I'm pretty much the jester of the Lord.

When I was in twelfth grade, I read some articles about the musical Spring Awakening and got really excited about it. I didn't have many friends so I ended up asking my parents if one of them would take me, and my dad agreed to take me. Unfortunately, when I came back from winter break, before I'd seen it, this one girl Emily, who was really strange but popular among the theater kids, had already become obsessed with Spring Awakening and she and her friends would constantly go and do student rush. It was sort of frustrating because I was in this awkward position where I desperately wanted to be friends with Emily and the other kids, but I just wasn't, and now I felt that I wasn't allowed to like Spring Awakening, because they liked it.

In an unrelated turn of events, soon after winter break I realized that I had a huge crush on Emily. I'd be about to brush my teeth and then I would just be standing there completely still, thinking about her, and I couldn't even turn on my toothbrush because the sound would upset me too much in my fragile state. Once I skipped play rehearsal because I got really scared that instead of my lines, I would just accidentally start yelling, "I WANT TO HAVE SEX WITH EMILY." I was incredibly anxious and miserable and twitchy, and just incredibly, incredibly guilty that I felt this way--and if you understand why this is about to be funny, then maybe you have seen Spring Awakening and you know that there's a character who acts exactly like my high school self:



When I (now reluctantly) went to see the musical with my dad, I was so extremely taken in and destroyed by what happened to the Amanda Forest Vivian doppleganger that I went into this weird stunned state for hours, and yelled at one of my teachers for not counting so I could keep up with her during an instrumental performance that happened later that night. I bought a t-shirt and a CD, but as soon as I got home I put them away in a drawer because I felt like I couldn't be into Emily and her friends' thing. It would just seem like I was copying. Which sort of sucked because I think it would have been really helpful for me to be able to listen to it, given the subject matter. Basically as soon as I graduated, I became a superfan for the whole summer.

But in February, when I was really in the depths of my Emily obsession, and basically hating myself and crying in the car on the way home from school (here's a really hilarious journal entry I wrote around that time, if you're curious), one of Emily's friends, Karen (I know, I'm so good at making up names), developed a huge crush on Gideon Glick, one of the cast members of Spring Awakening. Every time they went to the stage door, she would try to talk to him as much as possible, etc. etc., or sometimes she was too shy to go and Emily would have to go and get a message for Karen, etc. etc. Now, Gideon Glick looks like this:



I know you can't know for sure, but Gideon Glick is a guy who, if I found out he didn't like making out with girls, I wouldn't be all that surprised.

But Karen was.

Gideon Glick did an interview where he mentioned that he didn't like making out with girls, and Karen was fucking despondent! I mean, she was sort of joking, but also sort of not. She sat on the couch in the green room and all their friends clustered around her expressing their sympathy, while Karen nodded sadly and squished her hands together.

So, let's review: Karen was very dramatically expressing her unrequited love for a gay dude (a gay dude out of the many dudes in the world, who by and large like girls) who she didn't really know in real life, and everyone felt sorry for her. Meanwhile, I was unrequitedly in love with the bizarre but fascinating and very moving Emily, a person I saw every day, who I was forced to talk to on a regular basis while I pretended nothing was wrong, because if anyone found out, it would just mean that I was really gross and creepy and a predator.

I wanted to punch Karen in the face. Because I wanted to punch her in the face so much, I figured that it would be really, really charitable, and exactly the kind of thing God wanted me to do, if I went up to her before English class and said, "Oh, hey, Karen, I'm sorry about that guy you like." So I did.

Karen blinked and said snottily, "Oh, Gideon Glick? Oh...well, it's okay." She shrugged with the air of someone who has too much pain to share with anyone else; she sighed, and settled again into her limp Gideon-Glick-is-gay posture, against the wall across from the door of the class.

I almost went into some sort of fit of rage. What the fuck, Karen! I tried so hard to be charitable to you! I totally pushed down all of the totally horrible and intense and sad feelings that I have every day about Emily, and I tried to care about your stupid crush on some obviously gay actor in a musical, when I don't even know you very well! What the fuck!

Ever since this happened, it is sometimes hard for me to decide how good is too good. The problem with striving for the best is that sometimes the best simply isn't possible, and trying to do something really good might just result in you being really, really angry and, well...less Christlike. Like many people who are disabled, and also probably many college students who aren't perfectly suited to the way college is, I spend a lot of my energy just trying to think about how to get through the day. And I guess it's hard for me to decide how much to take "getting through the day" into account when I am making decisions. I mean, sometimes I think I take that so much into account, that I forget about goodness. But I'm also afraid of trying so hard to be good that I end up just really angry, if that makes sense.

This is pretty much all I have to say here

(although I don't know what it means and it's not finished, but it makes me feel good--not happy, but moral, which is a lot more important.)



You have eyes like a cow
Staring out at me
You have a voice like I don't know what
Inside me

I will die
I will die
Before I eat a cow with your eyes

You are the moon and the stars around
Which I orbit
You are the grass, you are the ground
You keep me here

But when you cease to keep me here
You won't disappear
When I collapse
You'll still remain

And I would die
I would die
Before I ate a cow with your eyes

No, no, no, no, no

I don't know what to say, you guys. Once a week I'm going to get to go into a school and hang out with kids who can't talk and can't do some other stuff. I guess I'm glad that I know some people who can talk, because talking can be fun, but sometimes I feel like the ratio in my life is a little too biased towards people who can talk, and I'd like to have more people who can't talk, or at least talk differently. The more I think about the kids I met on Thursday who can't talk, the more excited I am for my summer job where I'm going to spend a huge amount of time with people who talk differently or can't talk! And do other kinds of stuff that I think is interesting.

I think I'm not a very good person and I've felt this way for a long time. I think that it's helpful for me to be around people who don't do some of the things that we sometimes incorrectly assume everyone does, that we sometimes assume are part of being a person. This isn't some Lovaas shit, never fear; it's awesome because they are people, because it reminds me of how stupid and fallacious my concepts of existence are. Also, I invariably get reminded of how arrogant and blinkered I can be, when I make some assumption about how much a person can do or understand...and then they do the thing I thought they couldn't do! Which is wonderful. It's amazing to feel so happy about being proven to be a jerk, and I feel like it's sort of the essence of being Christian, or being the kind of person I want to be.

Being with people who don't pass for nondisabled is exciting because I don't have to worry as much about passing, and can sometimes even experiment with trying to go in the opposite direction, to see if the person responds to stimminess and stuff. Overall, it just feels sometimes like a much better, deeper way of being with people, better than the way I feel about being with anyone normal, except my really good friends.

So, I am really prone to flip a shit when I hear or read anything that seems insulting to people who are more severely disabled than people with an Asperger's Syndrome diagnosis. I try to be nice but it's really hard to worry about being nice to the person I'm talking to when everything they're saying seems either like it's mean to more severely disabled people, or like it's trying to erase them. I don't see Michael John Carley, Temple Grandin, et. al, as people who just have a different opinion that I should respect. Because if everyone's being so respectful, where the fuck is the respect for people who can't talk and wear diapers? Talking about respect just implies a world where everyone can do those things, where the only people being insulted are hypothetical. That is not the world I live in, or even want to live in.

Crazy Jane and Jack the Journeyman

Although I know when looks meet
I tremble to the bone
The more I leave the door unlatched
The sooner love is gone
For love is but a skein unwound
Between the dark and dawn

A lonely ghost the ghost is
That to God shall come
When I, love's skein upon the ground
My body in the tomb
Shall leap into the light lost
In my mother's womb

But were I left to lie alone
In an empty bed
The skein so bound us ghost to ghost
When he turned his head
Passing on the road that night
Mine would walk being dead

<333

(oh no, now I can't stop)

Crazy Jane on the Day of Judgment

Love is all
Unsatisfied
That cannot take the whole
Body and soul

And that is what Jane said.

Take the sour
If you take me
I can scoff and lour
And scold for an hour

That's certainly the case, said he.

Naked I lay
The grass my bed
Naked and hidden away
That black day

And that is what Jane said.

What can be shown?
What true love be?
All could be known or shown
If time were but gone

That's certainly the case, said he.

Also

I have no good stuff to say nowadays, that's why I don't. However I went to the sheltered workshop/day center for intellectually disabled people, which I hadn't been to in almost a year. Some stuff happened. I had a pretty wonderful time. Afterwards we (the Oberlin students who were there) were talking to the workshop director and I was expressing my disappointment that this guy Mike Perez who I really like wasn't in our class (basically this girl is organizing a thing where a lot of Oberlin students go in, a few every day, and work on art and writing stuff with the intellectually disabled people). The workshop director, who likes me for some reason, got on the intercom and called Mike Perez to the office.

Mike came in and looked at me. I had been saying he wouldn't remember me. I said hi to him. He looked at me.

"Green hair," he said by way of greeting. My hair is actually blue now but it was green before.

"Yeah," I said, "remember, you took a picture of my hair to show to your dad."

"I was worried about you," Mike said.

"Why, what were you worried about?"

"I was worried that you wouldn't come back."

"Well, I'm here," I said, "I mean, of course I came back."

The workshop director said that they could put Mike in my class, instead of the one on Thursday. Mike said, "Yeah--I was in that class because I thought that you weren't coming back, but now that I know you're back, I'll be in your class." He shook my hand and left.

(None of this is very "aww" or anything, Mike is not a sentimental person. He's sometimes jolly or angry; otherwise he is just kind of flatly crotchety. But I'm really glad about this.)