21 February, 2013

I work for a nice family. I hope they aren't regular readers of my blog because I am going to quote one of them (from memory, so not very well, but I feel like it's an important thing to think about).

"You try to figure out tricks to keep social interactions going, when you have a child who is often unresponsive. Someone asks them a question and the person is waiting and waiting, and so then finally you say okay, and you say something to keep the interaction going. But over time, the time before you answer keeps getting and shorter, and your child is getting phased out of the interaction."

19 February, 2013

Official Reactions

(Notes: This post contains references, mostly nominal, to a few things that trigger a lot of people, particularly violence, meat eating, and “national tragedies.” It’s not a very “tight” post because I am trying to explore some ideas I’m not sure about. It’s also very US-centric and I don’t know if people act this way in other countries. Finally, I am not a trauma survivor.)

Is a horrified reaction to images of violence more important than your efforts against violence?

I believe it’s not.

It seems to me like people’s reaction to the sight of violence or graphic descriptions of violence is held up as a higher indicator of their ethics than anything they actually are doing or think. Really, it either indicates who they are emotionally or their willingness to conform to standards of appropriate behavior.

For example, I knew a guy who, when a scene of male on female rape appeared in a movie or TV show, would comment, “It’s so hard for me to watch things like this,” but not in the context of asking for it to be turned off. Obviously there’s nothing wrong with him feeling that way, but it seems like rather than just avoiding things they cannot watch, people announce that they can’t watch something as though other people need to know this, and they sometimes even continue watching.

It’s really not worth mentioning except for practical purposes. First of all, despite the common performance of not being able to handle certain images of fictional or nonfictional violence, images like violent murder mysteries, slasher movies, and “true crime” books and TV shows are very popular. If people really couldn’t stand to hear or think about violent events, then they wouldn’t be reported on over and over.

On the subject of things that are reported on over and over, I think it’s disingenuous for people to act severely personally affected by 9/11 when they are not from New York, didn’t lose anyone, and didn’t have mental health problems focused on the event. Sorry to be so blunt but I don’t see the reasoning for someone from California or Utah thinking that they can claim 9/11 as a universal American experience. It didn’t happen to them and it’s just a symptom of the idea that we have to perform the official reactions instead of our own.

Similarly, when “a nation mourns” or “a nation’s heart breaks” because of a mass murder, you can count me out. Any reaction that I have to hearing about people being murdered is personal, not national, and I also know that there are many more people who I don’t hear about because their deaths aren’t considered tragic in the right way. It’s more important to me to think about how murders can be prevented than it is to pretend my heart is broken by something unrelated to me.

I’m pretty self conscious writing this because it’s probably the most stereotypically autistic thing I’ve ever said. It would be really easy for someone to say that I feel this way because I don’t have empathy or don’t understand the emotions most people have. But I obviously can’t convince someone otherwise if they choose to perceive me that way. The truth is this performance of discomfort and grief bothers me because I think it accomplishes the opposite of what’s necessary to make the world better.

First of all, it alienates the people who should be supported the most. If someone is very familiar with violence or abuse, they might be used to “horrific” stories and images. They might not react to them with obvious distress. When they hear about a violent crime, they might immediately start thinking about how to prevent similar crimes, instead of expressing grief. They might make jokes about abuse or speak about it bluntly. People who act this way are treated like they’re insensitive, inappropriate, and tasteless. I’m not saying that everyone needs to emulate them, but it’s a problem when people who are actually survivors, and/or are working tirelessly to end violence, can be perceived as not caring about violence because they don’t have the same reaction as people who are less involved.

On the other hand, some people who have survived violence are very distressed by images and stories of violence. To some extent, other people will be sympathetic to the needs of a person like this. If someone survived a school shooting and has panic attacks when he sees school shooting related images, people in his life might respect that and not show him a movie or TV show with a school shooting. But this accommodation might be allowed more because he’s seen as a broken victim who needs to be taken care of, than because people think his reaction is reasonable.

If he acts too angry and “entitled” about his triggers-- “What the fuck is wrong with you? You saw this movie before but still told me it was okay to watch it!”--then he’s “taking it too far.” People generally think of someone who has serious reactions to triggers as a person who needs an unfair amount of support. He shouldn’t act like it’s his right for people to be sensitive to his triggers. If his trauma is less impressive--if it was a long time ago or what happened isn’t quite shocking enough, or God forbid he even refused to disclose it--then people see him as even more unreasonable and spoiled.

And even if they respect his feelings, he’s still an outsider in a discussion of school shootings, because his experience is so different from the average person’s and for some reason, the average experience is the most important.

I haven’t thought of this since I was 12, but immediately after 9/11 my school chorus began to prepare for a 9/11 tribute assembly where we would sing patriotic and inspirational songs. We were far enough from the city that only one student at my school, “Lauren,” had lost a parent. On the day of the assembly I heard another girl ask a teacher: “But what about Lauren?”

“Don’t worry, I’m sure she won’t have to go to the assembly,” the teacher said.

I remember thinking how weird it was for us to be having this assembly--presumably to show we cared about 9/11--when it seemed likely to upset the person at school who was most affected by 9/11. It should be obvious that vague communal responses to “tragedy” are not centered around the people who are most affected, but on the emotions of people further away. If not, why are the emotions of survivors inappropriate, insensitive, unhealthy, or, at best, the “special needs” of a minority who must be accommodated?

I think the fetishizing of the emotional-but-shallow reaction encourages unethical behavior. I’m not trying to pick on people who eat meat (I eat meat sometimes too), but I think it’s a serious problem how horrified people will act about the sight of a dead pig or the idea of killing a pig, when they see no problem with eating pork. I’ve even heard someone imply she was morally superior to people who didn’t get upset by the sight of dead pigs--again, she was someone who ate dead pigs. This has implications far beyond eating meat or not eating meat and it can easily be seen in how people have different opinions about the deaths of people they can relate to--children, white people, non-disabled people, Americans--and people who seem too far away to be upset about.

It’s probably natural to be more upset about the death of a child, or someone you had a lot in common with, or the type of person you idealize. I’d probably have more of an emotional reaction to the murder of someone who lived in my city and had the same interests as me and had a disability. The thing is though that this reaction is meaningless. I shouldn’t let it dictate my opinion, because I should care equally about the murder of someone across the world who had nothing in common with me, or if I don’t, I should act like I do.

If I care more about my reaction to something that doesn’t directly affect me than I care about the reactions of people who are affected, or the facts of what happened, or how to keep it from happening again, then it’s like my idea of how to be a good person is based only in having feelings about things--not listening to and respecting people, not paying attention and researching what’s going on, not working to make things better.

This may surprise you but I think people are pretty bad already. But a great way to make yourself worse is to believe that you’re good because you did something completely useless that took no effort.

05 February, 2013

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

03 February, 2013


Sometimes it's hard to tell if there is much of a difference between me and young non disabled people I come in contact with. We have jobs. We live away from our parents. We don't have support staff. When I actually think about it, the difference is that I don't have any hobbies but I don't have what non disabled people would consider a good reason not to have hobbies. Basically, I'd have to either be pursuing some really intense goal like being a doctor, or I'd need to have been saddled with a lot of responsibility, like having custody of my brothers and sisters. In the first scenario I guess it seems single minded and tough of me not to have hobbies, and in the second scenario it's something that people would feel sorry for me about.

I don't feel tough OR sad about not having hobbies, because I enjoy all of my life. I have a bunch of things I'm trying to maintain, which go something like:

1. Work full time.
2. Shower every two or three days.
3. Do the dishes.
4. Eat regular meals and cook a lot of them.
5. Don't self injure or lie in bed crying all day or lie in bed all day at all.
6. Spend time with my roommate.
7. Keep in touch with 4 friends.
8. Wear clean clothes.
9. Brush my teeth so I don't get 7 cavities again.
10. Sleep 8 hours a night. (I love sleeping but if I don't sleep a lot the other stuff isn't possible, so maybe it's more of a means than an end.)

I'm having a little trouble with a few of the things on the list, but generally, they are all working, and I'm really happy with how things are. Which is good, because this is all I can do. I think that at some point I might be able to add more things one by one, but it's only going to be a few more things, and I already know what else I would want to do if I could.

I'm not an especially overscheduled or conventionally busy person, but I can't really add things to my life just because I'm interested in them, because it's not worth the effort. I don't like anything more than I like the first ten things on my list and I will not be able to do those things if I'm trying to pursue other stuff.

Of course, other stuff falls in my lap sometimes and I'm really grateful for that, but it's not a hobby.