I want to be clear. There is an original post I wrote. It is being described here. The point of that post is the following: Other people determine how disabled people are seen more than we do. So it is not that there is a specific type of disabled person who shows up more as tired, or as a sensory seeker, or some other supposed rarity. It’s not that disabled people are passing. It’s that nondisabled people are passing us off as something we’re not. And that’s all the difference in the world, even though it doesn’t sound like a lot. The two ideas have very different meanings and the two experiences are very different. Passing involves trying to look different than you are. Being passed off — what I described in the orignal post — involves other people forcing their interpreretations of the world onto you. Again, totally different.

So many times people have walked up to me and waved their hand in my face, saying, “Wake up, Jen,” or something to that effect. It is so jarring.

I come off as stiff and formal because it’s how I deal with my social anxiety that comes with being reprimanded, stared at, and bullied for moving weirdly. I would love to laugh, stim, tic, spin, whatever to my heart’s content, but as I’m going to be a healthcare professional, the burden is on me to make patients “feel comfortable,” and that means never moving in a way that looks “weird.”

I was not stiff as a child, nor am I now. I am the opposite. I wrote about this once, saying that I made friends with things and that’s the best of putting it I think.

I was obviously odd. I just grew up in an area where the negative attention I got for my behavior, the psychologist visits, and the special classes were all that happened.

I did, and still do, some things that feel good to me that aren’t acceptable sometimes. I sniff things. I know many people, cats, dogs, places, and things by their smell. I pick up things to smell them, especially if I’m surrounded by smells I don’t like. I’ve done a lot of things with my mouth, I like putting things in mouth and chew on my clothing without noticing it. I also tongue bits of food out of my tonsil cavities and my teeth and take them out to look and sniff. There are other things too, but I’d be making a very long comment detailing the things I’ve caught myself doing that are definitely not acceptable for twenty-seven year olds.

I also like to watch different things like dust motes and like to close my eyes and open them fast, especially when I can make after-images.

I don’t know if I pass or not. I get told by some that I look normal but that’s limited to my boyfriend right now and he is uncomfortable with the idea of having autistic children so I think maybe seeing my autism and acknowledging it might be disturbing.

I’ve gotten accused of stuff like that before…like faking my disability just to get attention. People think just because I can walk unaided yet choose to use various mobility aids for different reasons (balance, fatigue, etc.) that I must be exaggerating the effects of my CP or just plain making it all up.

By the way, Amanda, I’ve been a huge fan of your blog for years now, but I think this is the first time I’ve posted a comment. So…hi, from one blogger to another!

Well, thanks for all the help with my disorder, guys! Great column.