Compare and contrast

I just realized something weird about my feelings.  Actually, I'm guessing this is true of a lot of people and I'm going to write about in the second person, but there's always a possibility I'm just a huge freak.

Basically, things look better when you are comparing them to something worse.  This means that the worse someone is, the more their behavior can impress you.

For example, if your best friend usually criticizes you and insults everything you say, you will feel so special when he does tell you, "That was really smart."  He will seem really nice, and you'll feel like what he said was really meaningful because you waited such a long time to hear it.

If your boyfriend always hits you when he's mad, it will seem amazing if he gets mad and doesn't hit you.  It will seem like he's great for controlling himself, like he's really working hard to treat you well.

Actually neither of these people is nice!  It doesn't have to be this extreme.  But the point is you give more credit to people who deserve less credit.  Meanwhile, if someone is consistently kind to you, you never get the high of being shocked by an ordinary display of kindness.  Their kindness blends into itself and doesn't impress you as much as someone not hitting you 1% of the time.

I think I first got exposed to this idea in the form of a piece I read about being nostalgic for bad relationships.  It was basically about how bad relationships have some really exciting and good moments when your partner stops being awful for a minute and you're so excited about it.  Then you end up being nostalgic when you're in a relationship with a good person, because you don't get excited the same way. (If someone could find this piece, I'd love to link to it--I just couldn't find it.)

This is pretty obvious, I guess, but I was thrilled to notice myself having one of these reactions today because I could self-correct.  Here's to prioritizing people who are actually good to you most of the time.

when loving your enemies is hating yourself

Some more about the stuff the other day.

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

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

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

Lia is pretty stellar.

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

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

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

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

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

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

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

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

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

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

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

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

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

I guess I just like hating things

This isn't a for real post but my friend Bailee and I had a long conversation where a lot of it was about being compassionate and open toward people.  In the past year, Bailee has gotten really into approaching problems this way and I really like it in her, and theoretically, I want to be compassionate to people too, but in practice it can sometimes bother me when she suggests how I could deal with situations in a compassionate way.  In fact, I got so upset about some of her advice last week that I sent her an email saying "If other people's feelings matter so much that makes me want to die and that is a feeling too!!!" or something equally stellar.

When we had our conversation tonight, I kept thinking a lot about ideas and principles that are good sometimes but don't work in certain situations or if they are applied too liberally.

Somewhat similarly, I thought about the idea of supporting someone.  For example, I talked about the idea of a friend who has irrational fears and the first time he talks about them, it seems easy to just go through the fears and talk about them and try to calm him down and explain why they're not rational.  It's your instinct to do that and it feels good to try and help someone you care about.  Maybe at the time you would even feel committed to always helping your friend in this way.

But then I thought that you could get really tired of doing it because you want to talk about your problems or you just want to talk about a TV show or you just want to read a book and not be with your friend at all, and you're just bored and frustrated about going over your friend's irrational fears because you know they're irrational and you would much rather do something else and now it's starting to feel like you pretended you were someone you aren't because at one point, you really were happy to help.

And I also said that anyway it might be better for your friend if he talks himself through his fears independently instead of getting reassurance from you and that might be a way of dealing with the problem that yields more long-term improvement.

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I talked about, "You need to get out of your comfort zone."  This is actually useful advice for someone and maybe everyone.  But it can be such bad and upsetting advice for some people to receive in certain situations.

For example, let's say someone has chronic pain and she is dragging herself around to go to work and basically do the things other people do until she is almost crying.  Not understanding this stuff, a coworker asks if she would like to go to a dance party and when she says no, the coworker says, "You need to get out of your comfort zone."

I guess this is how I feel sometimes when someone suggests that I should be more compassionate or think about other people's feelings more.  Sometimes I feel like there's such an extreme amount of pressure on me that I'm just going to drop dead without warning.  It's so hard for me to even appear to be doing the bare minimum of what other people do, but in addition to doing that, I have to apologize for not doing it as well as other people, look happy and comfortable, and be suitably ashamed of not having hobbies.  It creates a weird twisted feeling inside of me where it seems like there's no room to even experience one demand before I have to fulfill all the demands that totally contradict it.

When I'm feeling upset about something someone did and Bailee suggests that I should be more open to them or apologize for my failings, it just makes me really triggered and makes me feel like my ever approaching doom has scooted a lot closer.  But I actually feel like this can be good advice for a lot of people, and would even be good advice for me if I didn't think of it in a way that taps into all the stuff that upsets me so much.

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I associate anti-ableism/disability stuff with being judgmental and I see that as a positive thing.  Culturally as a disabled person I am encouraged to see bad things done to me or other disabled people in terms of how bad our disabilities must have made the aggressor feel.  I felt this way for a long time but when I became more political I decided to start seeing life in a more black and white fashion and it was very relaxing.  It was bad to kill someone, be mean to someone, insult someone, bully someone, etc.  If you could logically explain why someone shouldn't be treated a certain way, then it was okay to say that it was bad to treat them that way.  It wasn't wrong to say these things were bad instead of thinking about the feelings of the aggressors.  It was okay to just be mad at the aggressors and say they were bad.

I think this is really powerful and basically correct but my attachment to it can sometimes mean that I get sad when I develop more complex ideas of things.  Like, if it's taken me a lot of effort to acknowledge that something someone did to me was bad and I'm relishing the fact that I've decided to start hating the person and thinking they're a jerk and not feeling guilty about it at all...then it can be pretty hard when I start getting to know other layers of the person or forgive them for what they did.  Sometimes I just want to give myself a hate break because I don't think being forgiving and open is going to make me feel as relaxed as hating someone who did something bad to me.

And those are my thoughts about this for now.

The time I learned to say no

The Disney Channel has a series of spots called TTIs, short for "the time I...," where kids and teenagers talk about things that happened to them.  Most of the kids are not famous, but one TTI features a teenage Disney actress talking about her dyslexia.

She explains what dyslexia is and talks about how unhappy she was when she realized she couldn't read as well as other kids. Through hard work and pressure from her family to practice reading, she is now reading above grade level.  The TTI concludes: "Dyslexia makes things hard for me, but not impossible."

I'm not criticizing the actress--she may have been encouraged to spin her story in a certain way, or she may just feel that way.  But I wonder why when we try to give kids inspiring messages about disability, we always hide the possibility of impossibility.  When I was in elementary school, stories we got about disability pretty much were always about dyslexic people and how they had to "conquer their dyslexia" by forcing themselves to read for hours every night.  Eventually they got better.  It was never questioned that the kids in the stories would get better, and it was never questioned that they were obligated to add hours of work to their day for the purpose of doing so.

I'm not dyslexic, but I'm disabled, and I can do the impossible.  That is, if I work hard enough and make enough sacrifices, I can do any of the things that I would identify as impossible for myself.  But realistically those things are still impossible.  For example, if I have to stay up all night to do X thing, then it's technically possible for me to do X.  But like all people, if I stopped sleeping my immune system would start shutting down and I might fall asleep in dangerous situations.  I have to look at my life in perspective to say that it's impossible for me to do X regularly and it would be unfair for people to expect it from me just because there is a set of circumstances where I can do it.

It's taken a lot of bad experiences and support from other disabled people for me to start saying "I can't" and "That's impossible" instead of "That's hard for me."  I was always encouraged to think that if there's any possibility you can do something, you have no excuse not to do it.  Something being more difficult or stressful should not stop you from trying to do what other people are doing.  When I was encouraged to think I could do anything, no one seemed to consider what the consequences of doing anything might be, or if it might be better to put my quality of life first.

Sentiments like "Dyslexia makes things hard but not impossible" are intended as positive and inspiring, but to me they sound not like an encouragement but a guilt trip.  Can't disabled kids say that, yes, it is impossible to constantly work on dealing with their disability if they also want to pursue their interests, spend time with their friends, and just relax?  Can't they say, "Sorry, this is too hard--I'm going to play video games tonight like other kids."

Meanwhile, can't we teach kids to have compassion for other people's disabilities?  I'd argue that the constant procession of supercrips is not helpful in this area.  How is a kid who's raised on "The only disability is a bad attitude" going to be respectful of people who are too tired, too cognitively impaired, or can't see well enough to do what's expected of them?

I don't have a problem with this particular TTI, but I wonder when we will see an inspirational figure who says, "It's hard for me to read, so I'm pursuing a career where I don't have to read that much."  Or, "This is about the time I learned that if I accept my disability and make realistic decisions, I will be happier."  It's not what people want to say to kids--they think it's discouraging--but I think it's what kids need to hear, and I don't think it's discouraging at all.

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.)

Good work in bad places

To do good work in bad places has been an ambition of mine for years. I didn't even remember how much I had written about this until I happened to be looking at old posts on this blog. Originally I think I wanted to work with kids with autism and be the only person who was being gentle and not yelling in their face.

I do remember this one woman at The School who I'm sure contributed bad stuff in lots of ways (in an ABA school it's not like an individual instructor can really work against a fucked up behavior plan), but she was just very gentle. When the kids got excited or took initiative in making jokes or plans, she smiled to herself. Other teachers and instructors would jump at the chance to correct a kid's movement or word choice and they would have almost a hateful look in their eyes. This woman would correct them when it would have gone against the rules of her job not to, but it was softer, more like the way a mother or big sister would tell any kid to settle down and use their inside voice.

I'm seriously glad she was there, although obviously, who knows how the kids feel about it.

To do good work in bad places is an ego trip. To do things the way someone wants or be there right away when someone wants help. Having a nurse pass on a message from a resident, that I am the only aide who actually brings ice in the morning. That guy (who I'm glad has gone somewhere else because he really hated it here) would sometimes just stop me and say, "Anyone ever tell you you do good work?"

At three AM in the bathroom one of my residents was telling me how much it frustrates her that she has to spend the day in the activity room when there's so much she wants to get done in her room. "I want to write letters, my flowers are dead and no one has emptied the vase and new flowers are coming tomorrow. I can't get anyone to empty the vase." I threw the flowers away and emptied the water into the toilet of another room. She said, "Thank you so much, I don't have any money but if I did I'd give it to you."

There is also this thing with women with dementia, maybe one part of it is actually caused by the dementia, one part niceness, two parts fear. Or I don't know what to call it. Maybe for some people it's mostly friendliness, but it makes me uneasy. "You're so pretty." "You're so pleasant." "You're so nice." "You have such a pretty face!" "You're a good angel." "Thank you so much." "I get such good help from you, I want to give you a hug." "You're WONDERFUL."

Jesus Christ, no I'm not. I like hugs but not these hugs. I don't think I am the only person who gets them from most of these women--that is the first scary thing--but even for the people who I genuinely please or impress with my gentleness or carefulness, the satisfaction at pleasing them starts to go away pretty fast because I don't want to work somewhere where someone thinks I am special for listening to them or trying not to hurt them when I move them.

I used to want to work somewhere like that.

I'm not the smartest, fastest, nicest, or strongest person in the world. But I am someone who has a certain value set when it comes to working as an aide. I'm pretty aware of the ways that staff people can fall into abusing and controlling "clients," and I have a strong feeling that I'd rather be played than take away more freedom than my residents have already lost. I want to serve. I want to treat people as individuals. I don't want to get mad at people just for not fitting into a schedule. I don't want to treat people like objects I am moving from one place or time to another.

When friends have tried to encourage me to work somewhere that isn't an institution and doesn't have shitty ethics, I remember a time at camp when the awful guy was complaining about a guy with a disability who in his opinion acted with too much authority and was afforded too much respect by the other campers. "Sure, he may seem normal," the awful guy said, "but his elevator does NOT go all the way to the top floor."

Every single other person in the room laughed. "That's such a funny way to say it!" one girl exclaimed. All the people in the room happened to be counselors who didn't have a family member with a disability or much experience with disabled people prior to starting this job. Still, they had always treated campers with respect. I was surprised to hear them laughing at a joke about someone's disability.

I started to think that a lot of staff are like chameleons. Their attitude toward disability and their values as a staff person--their idea of what they're trying to accomplish in their job, and their definition of right and wrong--can completely change just based on where they are. The culture of camp was generally positive and respectful about campers so the inexperienced staff people picked this up and imitated it, but they were completely willing to talk about a disabled person in a disrespectful way if they got into a conversation where that seemed like the normal thing to do.

I am not a chameleon. For one thing, I'm disabled. Also, for various reasons I'm not unaware of my capacity for evil, and learning about staff infection has pretty much been my life's work (at this early date). I end up thinking there's going to be staff in bad places and it's better me than a chameleon. I'm not going to be untouched, I'm definitely going to get shaken and pulled into a lot of fucked up things, but I will do less than they would do. Hopefully, if I take their space, they might end up working in a good place or not working as a staff person at all.

This is the way I try to think about it mathematically. I feel like I'm not necessarily going to contribute much to the world, but I can contribute this. I am the kind of person who's more likely to be able to do good work in bad places.

The math is not always working for me anymore.

I read this: Heart Failure: Diary of a Third Year Medical Student. It starts off with this guy promising to always be the person he is. He probably stays more the person he is than someone else would, but it's still pretty horrifying to read.

Blah blah blah Nietzsche blah blah blah I'm thirteen years old, but battle not with chameleons because the longer you gaze into institutions the less and less there is of the part of you that was naturally inclined to do good work.

can't imagine, can't judge?

(from LOVE-NOS)

Adelaide, actually I didn’t understand what line you were referring to with the terrible vs. unimaginable thing. I’ve been thinking about it more.
I think the difference between terrible and unimaginable is huge.

on the one hand, you can’t completely imagine anything if it isn’t your experience–and everyone should accept that that’s true.

for example, I grew up in a rich family. so if someone’s from a working-class family I’m obviously going to be like, I can’t speak from their experience and I’m going to give more weight to their opinions than mine re: class issues because I’m surely unaware of a lot of stuff. same for other oppressed groups that I don’t belong to. and I guess this is one kind of way of saying, “I can’t imagine your experience–not necessarily because I think it’s a terrible experience, but just, no matter what it is, because it’s not mine. so I’m not going to behave like an authority." But there are limits to this; if I strongly strongly disagree with someone’s actions/beliefs and they attribute their actions/beliefs to an oppressed identity or a terrible experience that I don’t have, and I really think about it but I just think what they did/think is not ethical at all…well, I’m still going to think it’s not ethical.

that’s not totally related but I feel like the response of “I can’t imagine your experience so I can’t judge you” is in SOME WAYS a good response to have, but I feel like when it comes to parents of disabled children, it gets way overdone. the raising/having of a disabled child is seen as so unimaginably terrible that other people are put in the position of feeling like they’re absolutely not ever, ever allowed to judge parents. of course we see this when parents of disabled children kill or seriously abuse their children or put their children in facilities where they are given shocks or take out their kids’ uteruses. anyone who criticizes these parents is constantly told, “you don’t understand the emotional pain/the financial pressure/the physical strain/the lack of free time these parents have.”

of course I don’t understand personally, because I’m not a parent. I try to be as aware as I can. I try to read blogs/watch movies/etc. about people with severe disabilities and their families so that I don’t just project my own experience of disability onto other people and families. I work with people with severe disabilities (I don’t do this to improve my thinking or anything, but just because it’s the type of work I enjoy the most and am good at-–but it helps my thinking, too). I try to think about how all those things could affect a parent–-and I also know that since I am not a parent, I can’t really imagine how it is.

at the same time, I think I can imagine enough to say: there are certain things that no parent should ever do to their kid. It’s not okay. I don’t believe there is some secret feeling that I can’t conceive of, that I would experience if I had a disabled child, and in this feeling would be the reason it is morally acceptable for me to abuse or kill my kid.

so, yes, I can’t imagine other people’s experiences-–but not to an extent where I am going to say, oh, I think certain experiences are so terrible that I’m not even going to begin to think about them, I’m just going to completely detach and not have any opinions about what it’s ethical for that person to do.

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.

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.

on fruit bats/the r word/everything in real life

I just want to talk about, well, everything I have to say, using this one scene from Skins.

Basically, JJ (who has ASD and some other stuff) doesn't like the way his friends Cook and Freddie are acting, and they won't listen to his opinions. He can sometimes need a lot of support, and he's not as cool as they are, so they treat him more like a little brother than an equal friend. Then JJ overhears Cook referring to him as a "barmy fucker" and gets even more pissed. He tries to tell Cook how annoyed he is at him and Freddie, but Cook brushes him off as usual.

Cook: Now, are you coming or do I have to keep look out myself when I'm buying gear?
JJ: (softly) Just care, okay?
Cook: About what?
JJ: (suddenly shouting) About me! About me, you twat! You're all fucking twats!
(Cook looks surprised and concerned, and hugs JJ and holds him, stroking his hair. Cook has a tendency to be overly demonstrative and sentimental.)
Cook: I pissing love you, J. Nothing's gonna change that, man. You're my very own little fruit bat. Fuck Freddie. It's just me and you now, J. Feel the love. You feeling it? Right?

--3x07, about halfway through

What Cook says is really sweet, but there's something that has the potential to ruin its sweetness--Cook calling JJ a fruit bat. We see at multiple points in this episode that JJ really doesn't like Cook to use nicknames or make jokes that are based on JJ's disabilities. In context, it seems obvious that "fruit bat" is a reference to "fruitcake," and therefore fits into the category of names JJ doesn't like to be called. But JJ doesn't say anything. He arguably winces at the word "fruit bat" and doesn't look completely satisfied by anything Cook is saying; but he closes his eyes and seems to enjoy being held.

Now, on some level, this interaction--Cook saying "fruit bat" and JJ not responding--is kind of fucked up. And one thing it reminds me of is something that sometimes happens when you belong to a minority that your friends don't belong to. You end up accepting stuff that offends you, because if you spoke up every time something offended you, your friends would just think you were annoying and be mad at you. This can happen to anyone (I love this post about token black friends)--but it's particularly hard to fight when you depend on your friends for support, or don't think you have the ability to make new friends.

When I look at the scene that way, my smile disappears, as does my desire to write a slash fic. It becomes a really sad scene. JJ seems isolated, marginalized in his own friendship, intimidated out of standing up for himself. I think this is a totally correct way to look at the scene; it's not just an interpretation, it is what's happening.

However, even though I think this is objectively true, it's not the only thing that's objectively true. Cook doesn't realize the effect his language has on JJ and, rather than consciously choosing to ignore something offensive, JJ is probably too emotional to let the word "fruit bat" outweigh everything else Cook is saying. And maybe he has a point. Sometimes people close to us say things that are offensive, and that doesn't make it right--but it doesn't always mean they don't care about us. We have the right to say we're offended; intent doesn't make something okay--but if we choose not to say we're offended, this isn't always a sad thing where we're submitting to the dominant culture, or whatever. I mean technically maybe it is. But you know, also our friend is hugging us. Maybe we "pick our battles." Maybe in our personal lives, sometimes we decide how we feel about intent, and maybe in some moments intent is good enough.

Can I say this? Do you know what I mean?

I got baptized this morning which was, you know, swell (can't really talk about it), but one of the priests told my parents and me the best story and I could only really sputter in response because I guess you would have to know me to understand why I found it such a wonderful piece of information.

The priest's daughter (who is hearing) is a first-year in college and just changed her major and life plan. She wanted to teach D/deaf students, but then she took a class on Deaf culture with a Deaf professor and learned that a lot of Deaf people don't think that hearing teachers should teach at schools for the D/deaf. After she learned about this, she changed her mind about wanting to teach D/deaf students, and decided to major in sociology instead of special education.

It was so nice to hear about someone who is so young but is already so ready to take into account what other people feel and have to say. As a disabled person I wish everyone who wanted to contribute to the lives of disabled people was willing to listen to the disabled people they want to help. And as someone who wants to contribute to the lives of people who have disabilities different from mine, I really hope I can live up to the priest's daughter's example and listen to what other people want and need, and accept it when the contribution they want and need from me is for me to not be involved.

something else about Skins

(stfu you can't imagine how much I love this show)

in 3x04 when Freddie finds JJ at Pandora's party and looks after him--I generally hate Freddie, but he's really sweet in that scene. and the whole fact that Freddie, Cook, and JJ all use the phrase "locked on" to refer to instances when JJ becomes obsessively upset; then people who aren't in the trio, like Emily, also start using the phrase about JJ when he is upset.

I think this is cool for multiple reasons.

We eventually learn that JJ has a diagnosis of "lower autism spectrum" (is this really what they say in the UK?). But the truth is, we really don't need a word to tell us about JJ. Often, pop culture portrayals of verbal people with ASD are very superficial and behavioral. It's hard to explain what I mean by behavioral, but you'll just have to take my word for it that JJ isn't portrayed like that. It's something like...you could watch a lot of clips of the show and not realize that JJ is written and played as having autism. But those moments of his character aren't at odds with the moments in between, where he certainly seems like an unusual person but it could be a lot of things, or the moments when he's quite stereotypically (but not inaccurately) "locked on" or having a meltdown.

He's just himself, the whole time.

As far as we know (well, I'm only seven episodes in, but still, that's a lot) none of JJ's friends know about his diagnosis. I'm guessing Freddie and Cook probably do, but we're not actually told that. The only time words related to ASD have been used are a)when we learn JJ's diagnosis by seeing his diagnostic papers and articles on autism that his mother has, and b)when JJ is upset and calls himself a bunch of slurs: "Retard! Nutjob, headcase, spazzo, mong, autistic fucking fruitcake, mental basket, shitty, in a fucking cuckoo's nest."

The first instance is kind of cheesy forced exposition, but the second is really interesting because we get a sense of autism not by itself, but as part of a whole group of stigmatized conditions. I think it's really--well, I can't say it's more realistic for everyone, but personally, I think that, assuming you're not part of any kind of Autistic culture, and especially if you are really upset about your disability, it makes sense that you wouldn't really identify as having "autism" or "Asperger's" or "ASD," but just as Not Being Normal. After all the idea of abusing someone for being "autistic" is not as established as abuse against people who are "retarded" or "mental baskets." So abuse against people with ASD is often done in the name of another disability that ASD superficially resembles. And therefore, it's not really strange that almost every term JJ uses in his outburst is a derogatory term for people with either psychiatric or intellectual disabilities, except for "spazzo," which I think is generally an insult based on CP and/or epilepsy; "autistic;" and "shitty."

Anyway, where I'm going with this, and with the fact that none of the other characters so far have ever had a discussion about JJ having "autism" or "lower autism spectrum" or "Asperger's," or whatever...is that the tendency to repeat a bunch of diagnostic labels in fiction, or to have a character who constantly "acts autistic," is often done in a clumsy attempt to educate, or to sensationalize the disability. In real life, people with ASD, and the people around us, don't usually behave like this.

The risk is, though, that if an ASD fictional character just behaves like themselves and isn't stereotypically, classically ASD all the time, and we don't use the word much, then consumers may just say, "Oh, I didn't realize he was supposed to be autistic, and he was just a little weird anyway. It didn't seem to really affect him." Which is annoying, because the character isn't really making a difference then. Plus there's the whole sense that if someone's ASD isn't immediately visible to you, then it's not really affecting them. But how do you show effects that aren't as obvious as a monologue or something?

What I think is really lovely in Skins is that JJ's disabled-ness is kind of like a ghost--although it's not something that people intentionally don't mention, like a ghost, but it's just something that everyone is very used to and doesn't state outright most of the time, and it's also something that isn't always apparent.

JJ has two best friends. This already takes him away from the worst of autism pop culture, where he would often be portrayed with no friends. But we soon see that there is something strange in the way Freddie and Cook treat JJ. They say some things to him that are kind of harsh, when he's being genuine ("She's not looking at you"). Cook roughhouses with JJ in a way JJ doesn't seem super thrilled by. JJ seems obligated to go along with all of Cook's plans*. There's an element of bullying in the way the two of them treat him, like he inherently has less authority or less value. At the same time we see Freddie and Cook's tenderness and sense of responsibility toward JJ when he is distraught.

(*I should note that there are some times when Freddie starts asking JJ to keep Cook out of trouble; the relationship between the three of them is certainly not a one-dimensional thing where Freddie and Cook always control, bully, and take care of JJ, but I think that's a very strong element.)

This is a really fantastically realistic and complicated portrayal of a trio of teenage friends, regardless of the disability aspect. But with the disability it becomes almost miraculous. Without the help of words like autistic or disabled (although Cook uses some words related to mental illness), we get the picture: JJ is guileless--which makes him funny, and easy to use--and afraid to stand up for himself, because he sees himself as inferior to other people--which, again, makes him easy to use and push around. He is very loyal to his friends, partly because he doesn't like things to change and partly, I think, because he doubts his ability to make new friends. Freddie and Cook sometimes treat him in a way that's really patronizing and disrespectful. (And despite this fucked up stuff, all three genuinely care about each other, because in real life friends can treat each other terribly without meaning harm.)

We also see that JJ feels guilty because his mom is stressed out about him. Which is really classic disabled kid stuff--real disabled kid, not TV disabled kid--and is conveyed really briefly and effectively.

So we kind of see JJ's disabled-ness, or what it means to him socially at least, through the way Cook and Freddie treat him and the way he reacts; and the way he feels guilty about his mom, and sometimes hates himself for looking like all those words. We definitely see straight-up impairment. But sometimes we see how the experience of growing up as disabled--not specifically ASD, but you know, "spazzo, headcase, fruitcake, retard"--has in some ways really shut down JJ's sense of what he can be and what he's allowed to pursue.

Also--the scene that started this for me, at the party, with JJ getting locked on. Freddie comes to the party, finds JJ, helps him to come outside, and then tells off Effy for not looking after JJ; and Effy apologizes. What I was originally just going to say is that Freddie and Effy are both talking about JJ as someone who needs this particular kind of support, but they're not using any words that are explicitly related to disability. Which is just an example of something that I like and think is realistic.

But another thing is just the complicated thing of being disabled and having friends who don't seem to need as much support as you need. To paraphrase, for the third time on this blog, a line from my favorite book: "They needed to treat him like an autistic person, but they also needed not to treat him that way." How is JJ supposed to say that Freddie's pissing him off and needs to stop ruffling his hair, when JJ was dependent on Freddie to come and rescue him from the party? Thinking about this really kills me. Gosh (oh my giddy giddy giddy aunt?) I love television.

ETA: Really annoyed with JJ's portryal in 3x09 though.

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.

8. Mindfulness and modulation (cashiering)

You learn a lot about this stuff if you are a cashier. A lot of the time, people will say unpleasant things for no reason, apparently without meaning to be unpleasant. A good example is when they will complain, often rather nastily, to the cashier about the high price of an item. Common sense and logic would indicate that a late teens/early twenties scraggly-looking cashier such as myself is probably not responsible for high prices or able to do anything about them. However, these people either lack the ability to discern this, or the ability to care about being rude for no reason.

(A fun fact: when I was younger, I found it almost impossible to buy anything because of anxiety that I would annoy or offend service people with my facial expressions, eye gaze, and general slowness, or by taking too long to put change back in my wallet.)

At the school dining hall where I work now, there is no cash payment, but there many other occasions to display a lack of mindfulness. Until recently, most people used take-out containers, and I was required to ask them to open their containers. (I'm not some kind of hall monitor asshole, but my manager hates me and would lurk about in the hopes of being able to catch me not looking in a take-out box.)

There were three kinds of people. Some people remembered the rule and would open their boxes before I even had a chance to ask. Some people required a vague prompt (I would gesture at their take-out box and mumble something; it didn't really matter what I said because they picked up on what I was asking them to do). A third group of people, thankfully a minority, didn't understand the prompt and I had to do a lot of word-finding and enunciating to explain what I was asking them to do. (Believe it or not, cashiering is a mostly nonverbal job except for like one script that you use over and over.)

I didn't resent the third group of people--maybe they didn't eat at the dining hall much--but I did feel very affectionate towards people who needed little prompting or no prompts at all. I developed a huge crush on a particular girl who would come to the dining hall to get take-out every day by herself. She would always come up to the register, open her take-out box without me saying anything, and give me this kind of grimace-y, rehearsed-looking (but adorable) smile. The smile made her look sort of scared, but I didn't know if she was actually scared. I just thought that her whole scripted routine was the dreamiest thing ever.

I have seen this girl walking around with other people, so I don't think she is like a social outcast or anything, but she's obviously a bit shy or strange or something and I can see that some normal people might think she is "sketchy" or "off" if she smiles at them that way. But in my limited interactions with her, she has always been observant and done everything possible to make things easier for me, even though she doesn't know me. This makes me think she's great.

6. Mindfulness and modulation (a general look)

One time when I was making an earlier stage of this post, Fiona commented and defined social skills in the following way:

I think social skills are a cluster of related skills, not just one skill. Mainly I think it revolves around a) being able to read people via their body language and facial expression and tone of voice, and to be able to adjust you how deal with them appropriately based on that, b) being a good communicator; knowing how to bring up sensitive topics and assert yourself without increasing the level of conflict but being able to achieve a sort of win-win situation where both parties feel like they were treated fairly and got what they emotionally needed, c) being able to approach people and make friends without experiencing a lot of rejection.

Right now I would like to zoom in on b (I think c is what a lot of this series is about--rejection is an action undertaken by other people--and I may briefly address a because I think it's the "skill" that has the strongest case and it would be disingenuous for me to ignore it). If you are going to describe social skills as getting along with other people and being diplomatic, then you have to prove that normal people usually get along with other people and are diplomatic. You can't prove this, because almost everything that happens in the world shows that it isn't true. Besides, if all normal people had this type of "social skills" and all people with autism didn't, then people with autism wouldn't have social problems anyway--as long as they only interacted with normal people, they could rely on the normal people to adapt to them. Since this is not how things are, it can't really be true that b is a part of being normal and not-b is a part of having autism.

I actually do think there is a skill set that involves mindfulness and accommodating other people, but it is not particularly associated with normal people. Lots of normal people have it but lots of people with ASD have it too. In fact, I think that some people who have grown up being "weird" or "socially impaired" or "socially isolated" have an almost mathematical sensitivity to other people's feelings, because to them relationships feel more novel.

One time another person with ASD send me an email saying something like, "I'm really stressed and I have to write an email to my sister, but I thought I should write to you first because I know that you might get worried and think I'm mad at you if I don't email you back." This is a good example (and a lovely person), but a better exploration of the same thing was written by Luai and posted here:

I saw a report once about a study where autistic kids and NT kids were asked a series of questions about how they would act in certain situations; one of them was what they would do if they saw their mother crying. While the NT kids answered that they would go over and talk to her and hold her, the autistic kids almost universally said they would do something they knew she liked, like emptying the dishwasher, or making something for her.
And I love this, because it illustrates something I've always felt was true. If you don't know the social script, the set thing "everyone" does when someone is upset, or the set thing that "everyone" thinks is valuable, you have to think it through for yourself. You have to think, what makes person X happy? And this is why that boy caught bugs for you in seventh grade, and why I made a green alligator-shaped valentine for my crush in first grade, and why a friend of mine made a special "romantic dinner" for her boyfriend that consisted of pokemon mac-and-cheese and dinosaur chicken nuggets.

Sadly the article referred to going over to one's mother and hugging her as being the "right answer" (as in, "all the normal kids picked the right answer, but the autistic kids...."). >.<; I honestly don't know how people can continue to be so stupid.

Postscript: I like Fiona and she can have whatever opinions she wants. I don't want her to feel like a frog that I am taking apart.

5. Is going to a hospital normal?

I really love chaoticidealism's blog, but I take issue with something she said in this NPR article about her. I actually don't really like the article at all because it seems to be focusing on how Lisa Daxer/chaoticidealism's ASD causes her to be able to study normal people and their amazing social behavior. I dislike this frame of autism ("autism teaches us about ourselves [ourselves meaning people who have certain abilities and act a certain way]!") and, although I haven't read all of her posts, the ones I have read have been about ableism and disability/autistic identity, not about studying normal people. I feel it does her a disservice to describe her blog that way.

Anyway, the offending passage is:

Daxer learned a lot about empathy from one of her housemates, a young woman she calls "superneurotypical" because she had such good social skills.

At the time, Daxer was feeling increasingly depressed and isolated. This woman seemed to understand. "I think she knew that I was hurting and she didn't want me to hurt anymore," Daxer says.

But her depression got worse. Eventually, Daxer ended up in the hospital.

"She visited me in the mental ward," Daxer says. "In our society, being crazy is considered very, very frightening. You think of TV slasher killers. And this girl, when I had depression, she visited me in the mental ward. That takes courage; that takes friendship; that takes empathy."

Obviously this girl sounds awesome, but I wouldn't characterize her awesomeness as "superneurotypical." To say that someone is "supersmart" would mean that they have more of whatever the average smart person has; to say that someone is "supergay" would mean they have more of whatever the average gay person has; and so on.

So, is the average "neurotypical" person (not a word I like, but I'll go with it) able to kind of judge what a person with ASD is feeling? I mean, is it the case that "neurotypicals" are better able than ASD people to judge everyone's feelings, not just "neurotypical" feelings? Which would lead to the conclusion that "neurotypical" people outperform ASD people at judging ASD people's feelings?

Well, that would be interesting--but it's obviously not true, because many people with ASD say that they can judge the feelings of other people with ASD. I don't know whether that's the case for me*, but I definitely know that lots of non-ASD people are terrible at judging how people with ASD are feeling. If you just noodle around the Internet for a minute, you will find quite a lot of ASD people describing how someone thought they were nervous or sad when they were calm, bored when they were having a panic attack, uninterested in things they were actually very interested in, and so on. In fact, sometimes police officers will harass or physically hurt people with ASD because they misinterpreted the person's behavior.

Lisa Daxer describes the "superneurotypical" girl as not just being able to identify LD's feelings, but as being brave and kind because she visited Daxer in the mental ward of a hospital, an intimidating and stigmatized place. Is this, too, a super version of normal behavior? Would the average normal person do something a little bit intimidating for the sake of kindness, whereas this extra-normal person did something very intimidating? With the implication being that people with ASD wouldn't inconvenience themselves for the sake of kindness at all?

Again, I think this is not true. I think normal people run around hugging each other all the time because that's easy for them. I think all people, when confronted with a scary action that seems like the right thing to do, make a decision based on various things--ability to handle anxiety and stress, bravery, morality, how much they care about the person they're doing it for.

I don't think chaoticidealism's friend was more normal than other normal people. I think she was a normal person who was extremely sensitive, loving, and brave. I think disabled people can also be sensitive, loving, and brave, and I would prefer that those characteristics not be equated with "ourselves" (non-disabled people) at the expense of the rest of us.

(I should mention that the impression I get of chaoticidealism from her blog is so different from the impression I get of Lisa Daxer from the article that I wonder if her comments were misrepresented by NPR. I have no idea whether this is true, but if it is true, the passage in the article is still a good example of how not having autism is associated in pop culture with kindness and sensitivity, to an illogical degree.)

Regular Person Listening Day

Hi, it's Autistics Speaking Day, which is a thing. Um, well, basically an organization for autism made up of people that aren't autistic--I don't know if you've ever heard of that before, but there's a lot of them. They decided that they should do a thing on November first, called Communication Shutdown, and they thought that people should promote autism awareness and try to think about what it's like to be Autistic by not using social networking sites like Facebook.

Which, I mean,

number one, like disability simulations tend to not be good, because you can't tell what it's like to have a disability just by putting on a blindfold or sitting in a wheelchair or not going on Facebook (which doesn't actually have anything to do with being Autistic)...but you can't tell what it's like, so it's silly to imagine that you can and it's better to just listen to people and treat everyone respectfully,

um, you know,

and, um, I think a lot of Autistic people, when we hear about autism awareness, are like, "well I mean, wouldn't people be more aware if they just listened to us, instead of doing something like this, which doesn't really have to do with us?" So Corina Becker, who is an Autistic person who does a lot of cool things, decided that we should have Autistics Speaking Day which just means that people who have autism could just, like, write or say something, like, on the Internet or somewhere else, just to tell people how they feel about stuff.

I made a post and stuff, it's about the sort of thing I always talk about, nothing interesting, I'm going to link to it in the description of this video.

One thing I wanted to say is just...I mean, when I see the phrase "Autistics Speaking Day" that does make me feel, you know, it makes me feel weird because some people can't speak and some people can't even write.

So, by definition, it has to leave some people out I guess, at least superficially, but, I think, um, I feel like people may see that and say, "Well, the people with autism in my life, they can't write a post, and they can't tell me how they feel." So, um...to people who feel like that, who are in that situation, I think that there's still a way of observing Autistics Speaking Day with the person in your life. And, um, one way of doing that is respecting the person and knowing that the life they live has meaning for them.

One example of the opposite of what I'm recommending is something that one of my psych professors said I think a week or two ago when she was talking about autism. Someone mentioned that one of the kids with autism they had worked with was very focused on like, people's hair, or like, shoelaces, or something, I can't remember what it was...

No, it was trains, which are great, it was actually something that's, like, inarguably cool, but then my professor was like, "Well, you know, that's autistic people, they get really interested in uninteresting things."

So, um, I mean, how does anyone decide what an uninteresting thing is? Like, I don't like the TV show Glee, but my friend likes it, and my friend doesn't like the TV show Mad Men because she thinks that nothing happens. And some people like sports, like, professional sports, and I don't like professional sports, I like comics books and some people don't, um, and, well, I like trains, and I like, um, looking at colors, and some people, um, they just like spinning things and looking at them. People like a lot of things and I guess I don't really like the idea of saying that...

I mean, it's certainly possible to say, "For this person it's become, like, a severe problem that they're always spinning things and not doing anything else." You know, you can say that, but I feel like the level of judgment in saying, "They're interested in uninteresting things..." (coughs) Sorry. I'm also sick, um, in addition to being Autistic.

But um, I think a lot of the time, people have a way of talking about people...I mean really, all disabled people, but often people with very severe disabilities who aren't verbal, people have a way of looking at them and saying, "their meaningless behavior, um...they...I don't understand what they're doing so I think that it's meaningless."

Um, I guess I feel like one thing that Autistics Speaking Day, which I guess you could just call it Regular Person Listening Day, I guess one thing that Regular Person Listening Day could be about is just seeing that everyone does what they do for a reason, and if someone in your life is doing things that you don't understand, like making noises, or getting very upset when you don't think they should be upset, or not being able to wear their clothes because their clothes are uncomfortable for them and their sensory issues, I mean, I feel like a way of listening to them is just refusing to ascribe meaninglessness to behavior that you don't understand, um,

I think that's a kind of listening that you can do for everyone no matter what they can do in terms of talking.

Autism is a world and you're not invited

(This was going to be my Autistics Speaking Day post but then I accidentally wrote something else. So this is like my pre-game.)

Now, I have a tendency to say things about other disabled people, like, "Well he can't see, but it's not such a big deal to him, he knows how to get around" or, "Well she can't walk anymore--so she's using a wheelchair now." I end up interjecting this tone of forced mellow when I hear other people saying things like, "Oh it's so sad she can't walk..." or, "Oh and he's *blind*...."

Sometimes people say that I am being insensitive and implying that just because someone has a way of getting by, they don't have a hard time because they're disabled. The reason I end up saying forced mellow things, though, is because I feel like saying, "Oh it's so sad..." or, "Oh I'm so sorry..." is really invasive. It's their thing to feel sad about, not yours. Glossing over the hard parts of disability, if that's what I'm doing, is not really any more biased than emitting massive rays of sadness in the direction of someone else's experience.

Especially if you have a lifelong disability, like I do, massive rays of sadness can really creep you out. When explaining I am disabled I find myself wanting to say something like, "I have autism, it's pretty boring. It's not a big deal." However, if I said that I guess it would have to be followed by a qualifier: "I mean, it's a big deal for me, but not for you."

I really don't like when people make a big deal out of the way I move, react, and speak (form and content). I used to think that I should be working harder to act and communicate in a way that people wouldn't have anything to say about. The thing is though that I already try to be polite and pay attention, and I feel like that should be enough--I don't know how many years it would take to blend in completely, if it even happens at all, and I don't know what the emotional effect on me would be. So I prefer to be like, "Hey, can you just chill out about the way I talk, I have autism. Thanks."

The problem is that my disability comes in two parts: the part that most people can see, and the part that I actually have to live with. I don't really think the way I talk is a big deal. However, I'm pretty affected by central coherence/transition problems and anxiety, and those things are a huge deal and often kind of a scary thing.

It is my choice not to try to get school or work accommodations, even though all my issues could be fairly easily accommodated. Because these kinds of brain problems are hard to quantify, I'm extremely leery of explaining them to people who might think I'm being dishonest. At school, the kind of tasks you're required to perform in order to get accommodations are things I'm often not mentally or emotionally capable of doing; so the process of getting accommodations would be harder than doing without them. I would never ask for accommodations at a job out of fear of being seen as incompetent (given the chance, I try to avoid them knowing I even have a disability diagnosis).

Actually now that I said all that I'm not sure "choice" is the right word to use, but I guess the point is that, for me at this juncture, the bad/internal parts of my disability are things that I very much keep to myself as much as possible. "Myself" is not just me though, it is also some of my friends who either have disabilities or just are awesome, who I'm able to talk to and get help from regarding the brain stuff. They are people who can come inside my disability with me, and it's nice to have their company.

But you can stay out there, please. I'm fine. I mean, I'm actually not fine as in "looks different but is able to do the same things as anyone else." I can't do some things and sometimes I feel super bad about it. But no matter how bad it gets it is never an occasion for some other person to feel bad about my disability in some existential, abstract way. I would really rather someone just be cheery about it--"okay you have autism, that's cool, just like some people have blue eyes"--than try to insert themselves into my disability with me when I didn't invite them.

I refuse to feel bad

As Pete Campbell once said, "I refuse to feel bad." What an awesome thing to say! I love Pete Campbell! However, I guess he kind of should have felt bad, right, in that specific situation. Right? I still don't know what we were supposed to think.

The act of refusing to feel bad is very powerful. Especially for me.

I think this is partly the case because I sometimes feel bad about things that other people don't feel bad about, and vice versa. So forcing myself to feel bad because I know that someone else feels bad, combined with a reluctance to express that I feel bad, becomes a way of denying my own experience.

It is also the case that I grew up with someone who, to put it mildly, had a lot of feelings. By the time I officially decided this wasn't my fault, I was old enough to vote and almost old enough to buy alcohol. Obviously I cry, and sometimes people I love cry and my reaction isn't defensiveness. However, there is a certain type of angry crying which I've now come to see as a weapon, and when someone starts angry-crying at me, it makes me want to disengage as fast as I can from what is going on.

This is very mixed up in politics with me because I think a lot of opposition to disability rights/anti-ableism is expressed in the form of angry crying, or something that looks pretty similar. "Shut up! Disability is so horrible! It doesn't matter if you're disabled and I'm not, you should listen to me because I'm crying!" (Sorry to be such a bitch, but admit it: you know what I mean.)

Refusing to feel bad can go hand in hand with trying to feel good. An example of this is meeting someone with a quote unquote "significant" disability and actually getting to know them and see how they feel about things. Getting to know someone is a lot of fun and I would absolutely recommend it every time over reading a parent or professional's negative description of what a disability is like. Even in cases where the person is in tremendous pain, their life will still be more complicated than "this disability is bad and you should feel bad."

The problem though is that it's not that easy for me to say, "Well, I don't feel bad about disability (mine or someone else's), and if someone else thinks I should, then fuck them," because, you know, some people who think I should are people in my quote unquote real life, like family members and friends. And since I've started refusing to feel bad (a condition which developed between the ages of twenty and twenty-one-and-a-half, more or less), I have made people angry-cry by telling them that I think they're being offensive and that they're hurting my feelings (often about disability stuff, but sometimes about other stuff).

At this point, I sort of start to get bogged down, because I know that writing this blog is kind of a special interest. Even though some stuff that I write here is about my and other people's experiences, in a straightforward way, lots of other posts just consist of me poring over pop culture or really tiny inconsistencies in language and identity preferences and blah blah blah. And I haven't always been into this stuff.

So I mean--should I be able to separate the part of me that wants to say these things from the part of me that is close with those people? It's weird because I haven't always wanted to say these things, or felt able to say them, and also because if I have a history with someone that involves fuckups on both our parts (more mine, for sure, with some of the people in question) it's not a situation where I can just be like "oh they suck, they're just refusing to acknowledge their privilege. This is boring, I give up." They don't suck--they're a real person.

Maybe I suck.

Maybe I'm just being an asshole and this is just like getting in a fight with someone and making them cry because they don't like a TV show that I really like. Is it like that? I don't think it is. At the same time, when it comes down to it I often don't refuse to feel bad. I often feel really bad. But intellectually, I still don't think I was wrong, but I feel like I would be a bad person if I didn't pretend to think I was wrong so the other person wouldn't be upset anymore.

And so on and such forth.