Wednesday, December 2, 2009

Who we are and what we do

I'm learning something lately. There's a big difference between who we are and what we do. Who we are, the very essence of our being, may or may not be accuratelyl reflected by our behaviors. Who we are is something unchanging and unchangeable. What we do changes from day to do, and we can change it. No matter how much we change what we do, though, we will never, ever change who we are.

This whole issue of getting a disability counselor at my college, for instance. My college receives no federal funding whatsoever. This means that it does not have to follow certain legal restrictions that it would have to follow if it did receive federal funding. That's why it doesn't take the funding... so that it can do what it wants. Why a place that advertises itself as being "authentically Christian" would fail to provide assistance for those with disabilities is beyond me. This isn't the government pushing them to do something they consider immoral... this is is moral as it gets. But I digress; as far as the law is concerned, my college can push around people who are of a different age, gender, religion, sexual identity, or, yes, disability. They can choose to hire only "authentically Christian" faculty. They can kick a student off campus for having premarital sex or engaging in producing homosexual adult films (which happened last year). And, yes, they can quietly shove it under the rug when a student like myself has issues. They don't have to deal with them; they can simply make them go away.

Here's the issue I have with that. You can argue that it's wrong to choose one faculty over another due to religion or to remove a student from campus for having sex. In fact, I won't even say it's not, because I don't want to get into that right now. But when you sign on at that institution, as faculty, you give your Christian testimony and sign your name to it. You say, for all to see, I am a Christian. When you become a student of the school, you sign your name to a code of conduct, which includes not having premarital sex while you are a student there. You choose to put your name on that paper. No one forces you to do it. I did not choose to have autism. And I sure as all get out never signed my name to a paper saying that I would not have it. That would be ridiculous. I think we can all agree on that. As long as you are affiliated with that institution and have your signiture on such a paper, doing things like flaunting your non-Christian religion as a faculty member or producing adult films as a student constitute making poor choices. Again, I'm not argueing that those choices are otherwise poor or not, because it's not the time or place to get into that... but as long as your name is on that paper, you should expect repercussions for breaking that contract. What contract did I break by being autistic, other than perhaps the unspoken one with the school that I would be perfect?

Who we are is not our behaviors. Behaviors can be changed. Justin and I had a conversation the other night about our autism showing. You see, his autism shows to the outside world more than mine does. To be specific, he rocks and hums to himself almost constantly. It's not annoying, but it's obvious. If you talk to me briefly, on a good day, I can pass for non-autistic (though I still don't have that whole eye contact thing down...). Justin, to put it bluntly, could not. According to him, he's learned not to care what people think about him. But, he still has to put up with frustrating situations. He volunteers for a group that takes clients with mental retardation on outings, and recently, another staff on the trip mistook him for a client. He wants to become a manager in his field of social work, which will require a lot of interaction with other people. These are some of the reasons that he wants to make his autism less noticeable. Because regardless of how much you don't care what people think, it still hurts when people misjudge your intelligence so greatly. Because no matter how much you don't care, sometimes what people think affects you, like in getting a job. Justin and I talked about ways to work on curbing his rocking and humming in public. I explained how I do it, because I tend to rock in public too. You basically have to be hyperaware about it. Pick a half hour chunk of time, and for that half hour, ask yourself almost constantly, "Am I rocking?" Gradually lengthen the amount of time you're paying attention, and it does get easier. The second you notice you're doing it, stop.

Does it sound exhausting? Because it is. It's exhausting and it's frustrating, because sometimes it feels like you'll never be able to stop. Some days are easier than others. I'm not saying my method is without fail; it certainly takes a lot of time to be able to last a whole day without the behavior.

Justin's concern was that he didn't want to change who he is. I reassured him: changing behaviors does not change who you are. They are just behaviors. They are what you do.

So let's get this straight.

Thing I do: flap my hands, hold my ears, get easily distracted, repeat myself, refuse to talk on the phone, sometimes hurt myself, get extremely anxious

Things I am: autistic.

Got it? I thought so.


  1. In my experience as a parent, when I feel we need to change a behaviour, the first thing I ask is "what is that behaviour for?" For something self-stimulating like rocking I try to find an equally rewarding more socialy acceptable behaviour( which can be easier said than done admitedly) but for vestibular stimulation (rocking, spinning, chewing, biting) you could find chewing gum gives the same reward as rocking. It's important not to lose sight of what you need, which is what you get from rocking, which is why you do it.

    I would be interested to know if your college would have refused you entry if you had your diagnosis before you started.