29 September, 2010

the calmness checklist of a lot of people at my school

I don't want to call this "non-ASD privilege" or anything. There's already a checklist sort of like that. But I have been thinking and observing my particular situation, which is to say: grew up being stigmatized as disabled in my family, have always kind of known there is shit wrong that I have to manage (although I haven't thought about it as concretely as I do now), but have pretty much done the things that other kids with a lot of class privilege do when they are growing up. I haven't gone to a segregated school, I currently attend college, I don't see any reason to think that I will ever be in any kind of (good or bad) supported employment as people with more severe DD may be. And I don't think I will ever be in any danger of being forced to live in an institution, no matter what.

A little more than a year ago I made a YouTube video where I compared myself to a wheelchair user who when asked to describe her daily journey describes a series of places that any non-disabled person might go to. That is--the places she could go might be highly limited by which spaces are wheelchair accessible. A person can move through a bunch of places and situations that seem "normal" and are not identified as being for disabled people, but actually the person might be disabled and be quite affected in the number of options she has.

Although I think I have a ton of privilege just because I haven't always felt this trapped, I feel really trapped now (senior year). And I am surrounded by people who don't have disabilities and don't feel the same intense need to start planning their futures now for the sake of being safe. But on the surface we don't look all that different.

In fact I like my college partly because it is a very stoner/experimental/hipster/hippie/radical environment. I don't identify as any of those things, but the social environment is very comfortable for me because there's so much diversity of acceptable behavior. But this very social environment is something that really pisses me off right now. I mean, a lot of the people at my school who behave "unacceptably" do so because they think it's an interesting thing to do. They can quit any time and they don't have to structure their lives around it. Similarly, when they don't do things they are supposed to do, this is called relaxing and not worrying too much and giving themselves time. There are some things that I just can't do.

In my class where we work with kids and teenagers with DDs, we had some discussion about what a developmental delay is, and then what executive dysfunction/poor central coherence look like in people with ASD. This often degenerates into a good-humored discussion about how many people enter college and don't even know how to do their laundry, and how a bunch of guys still rely on their girlfriends to schedule everything for them, and how many friends of the person speaking don't even understand how to cook a meal. As a person who is really worried about the prospect of cooking meals and scheduling things for myself and completely wearing myself down to the bone because of how much emotional effort it takes, I don't think this is funny. And this article makes me spitting mad.

So, without further ado:

(this is very personal and kind of mean, and probably would not hold up in court)

1. I can ask for an extension without having to feel like a failure.
2. If I don't graduate on time, that's cool.
3. I can talk in class without feeling guilty for taking up people's time with my bad talking. I can even get off topic or say things that are totally stupid.
4. I can schedule meetings with my professors when I think I might be doing badly in class, because I don't worry that they will think I'm lazy or don't care about the class because of how I come off. I don't only schedule meetings in the event of being in danger of failing the class.
5. I can schedule meetings with professors just because I like them and want to become friendly with them, because I think that they'll like me too.

6. If someone expresses romantic interest in me, I don't worry how they will find out or if I should tell them.
7. If someone expresses romantic interest in me, I don't just end up avoiding them altogether because I don't want to deal with figuring out #6.
8. If someone expresses romantic interest in me, I can be pretty sure that it's not because they are academically interested in my lack of autism.

9. I'm never sitting in a class where everyone is ASD except me and someone says, "I'm really interested in not-Autistic-ness, it's so fascinating."
10. If I tell someone I'm not Autistic, they never immediately recommend that I read a book about a character who isn't Autistic written by an author who is Autistic.
11. I never have to try to figure out how to give feedback in a writing workshop to someone's story about how depressing, confusing, and annoying their sibling is because their sibling doesn't have autism.
12. Actually, I just never have to ever sit in any class where students or professors say anything about how much sympathy family members deserve for living with someone who doesn't have a disability.
13. But if someone ever did say something insulting or dehumanizing about people without disabilities, I could just say I was offended and explain why. I wouldn't have to feel like people would think I was overreacting. And I definitely wouldn't have to feel like people might be thinking, "Wow, I guess people without autism have trouble understanding other people's points of view." Or, "I guess people without autism don't understand humor." Or, "I guess people without autism have to take over the conversation and make it all about their own interests just because someone made a little comment about something related."

14. I can intentionally vomit on the steps of the library, and that's just how I am, not a sign of how I don't understand social norms.
15. I can also wear pants with holes in them and no underwear so people can see my junk (same person). Again, this isn't because I don't understand the appropriate way to dress, it's just a personal choice.
16. I can never shower and it's not because I have problems with personal care. I just don't feel like it.
17. Being out of it or overfocusing on weird things or dissociating is so fun that I actually pay people for substances that can make me do those things.
18. When I'm in a less accepting environment I can start showering and stop throwing up on the library and showing my junk to everyone and smoking so much weed, and get a regular job.

19. I don't have to worry when I am in class and the professor is sitting across from me and I'm afraid he will be making eye contact and expecting me to say something and I won't react fast enough or I won't make the right expressions.

20. When I'm at home I don't do my laundry and I don't feel bad about it. My mom doesn't tell me that I need to practice doing laundry or I won't be able to live on my own. I don't feel bad that my parents make my doctors' appointments because I'm still young and I don't have to prove that I am normal and independent.
21. When I mess up tasks like cooking, packing for trips, and cleaning my room, or get them done late, my mom doesn't tell me that I might never be able to live on my own successfully because of this.
22. My parents don't make me balance a checkbook when no one else does because I need to learn to be organized and responsible.
23. My mom doesn't cry about me when I am not feeling good. My mom doesn't cry and make me feel guilty about how she was upset by bad things that happened to me in the past. If I am feeling upset, I can just tell my parents without feeling guilty.
24. As a young teenager, I didn't wish I had a sibling so my parents could have a kid who would actually do things besides make them upset.

25. When I am interacting with service people, for example when I am eating at the dining hall, I don't worry about whether I am inconveniencing them. I don't pay much attention to what they expect from me (for example if they have a policy of checking inside take-out boxes, I will always wait to be asked by the cashier; I will never open my take-out box knowing it will be quicker to do that; and I will often bury my meal card deep in my pocket and stand there rooting in my pocket as the cashier waits and a line of people grows behind me). [a/n: yes I am the cashier in question :)] I don't worry about whether other people can understand my speech. After all, if other people can't understand what I'm saying, or are offended or inconvenienced by my behavior, it doesn't really reflect on me that much. I'm observant because I believe I am and I have good social skills because I believe I do and people should understand what I'm saying because I believe they can.

25. I might just move to any city I want if I feel like it. I am not worried about how I will get a job. Maybe my parents will send me money, that's cool. I'll figure something out.
26. It's easy to make friends. I know people will like me so I just talk to anyone. I just ramble to people about whatever I'm interested in.
27. I haven't had a paid job in a while. Wait, should I be worried about that? I'm really busy with schoolwork and friends and performance art. Of course I can get a job when I want one.
28. No matter how old I was the first time I got a paid job, I didn't feel ashamed that it had taken me so long to do what I believed a teenager was supposed to accomplish.
29. I can take time off from school if I want. I can go to grad school for fun.
30. Whatever I'm doing, I am okay.

Having written this, I've removed the word privilege. It's very scary for me to have to think about how hard it sometimes is for me to take care of myself and how much I have to plan for the future (always living with a friend, probably; I don't think living alone is safe for me). And it makes me angry how much I feel trained to think of myself as a burden.

However, I was talking to a friend my age who also is disabled and is class/financially privileged. And we ended up thinking it was maybe kind of good that we felt way too self-conscious about being disabled to just noodle around and not worry and be failures to launch. (On the other hand, watch all those people eventually launch and be way more successful than me because they're so confident in the knowledge that they're normal and people like them. Well, we'll see. I have a little time yet.)


  1. It's interesting that you don't feel safe with the idea of living alone, because I've come to the point in my life where I *have* to live alone. I'm too much of a slob to live with anyone else; I talk to myself and people get really weirded out by that, and also I feel safer not having to worry about having to make sure my interpersonal relationships where I live are harmonious (hard to do if you're me).

    Having a diagnosis I consider a privilege of sorts, since I figure it gives you the right to forgive yourself for all these things, which is the main reason I want one.

    It's interesting to compare and contrast the stuff you have trouble with versus what I have trouble with.

  2. I don't know if having a diagnosis would always make things better. Although, I maybe (probably?) don't even have an ASD, so maybe I don't have a lot of room to talk.

    But anyway, there are some things that just come across as weird in a good way if people don't think of you as having an ASD, but if they do think that, then suddenly they see it as a symptom and it's not interesting or endearing anymore. (I'll admit that it can be not really great, though, when things happen like people laughing and saying how funny you are when you were being serious. It's just not the very worst reaction they could have.)

    Maybe it's stupid to be ok with things that are slightly bad just because they could be worse, though. I remember when I came out to a friend from school, she avoided me for a couple weeks afterwards. And I was a little upset, but I wasn't mad because there were a lot of worse things she could have done. She could have talked to me anyway but been mean about it. She could have told all our classmates. She could have went and told my parents. But she didn't, so I didn't get angry, even though I might have had she reacted in the same way to something else I told her.

    (This got kind of off-topic, sorry.)

  3. I don't care if people are off-topic, you guys!

    I can't live alone because of function/central coherence stuff. I know from when I studied abroad that I technically can do things like get myself out the door and buy food on basically no emotional reservoir, but it's just a terrible experience.

  4. This is a really great post. As someone with a similar class and education background, I really related a lot to it.