What’s It Like To Be Disabled?

by dpreyde

In every presentation I’ve given, there are two questions that inevitably get asked. And it’s my bad luck that both of the questions are boring and almost unanswerable.

The first is, “Can you define Asperger’s?” It took me fucking years before I figured out how to do that.

The second is, “What’s it like to be disabled?” To which I usually replied, “I don’t know, what’s it like to not be disabled?”

People don’t tend to respond well to such flippancy. So here’s a list of what it’s like for me personally to live with a disability.

  1. People ask you about your identity. Nobody’s ever asked me what it’s like to be white, male, or middle-class, but people always wonder what it’s like to be disabled.
  2. It is assumed that you are interesting. Again, nobody gives a shit that my dad grew up in a Catholic household. But when people find out that my dad, his siblings, and possibly my grandparents are all Aspie, they start paying attention.
  3. Your sexuality is called into question. I’ve had at least two people wonder whether, because I have Asperger’s, I am also asexual. Most people are assumed to be sexual beings.
  4. I pay close attention to social dynamics. Other people can take stuff for granted. Other people can get lazy. But when I’m hanging out with someone I don’t know well, or in a social situation with two or more people, I’m watching and listening intently. My guard rarely goes down. Interestingly, this has resulted in people perceiving me as polite and conscientious. Polite, conscientious, paranoid, obsessive, tomato, to-mah-to.
  5. You can never assume that people are thinking or feeling the same things that you are. In fact, people generally aren’t. This is because my brain is wired differently than other people’s, and I suspect I’m at least partially immune to cultural imprinting.
  6. To continue that, you have to accept that your emotional reactions have the capacity to offend or alienate people. My feelings are important, but at the same time, I often have to cover them up to avoid hurting other people’s feelings. A good example of this is death. I have an attitude toward death that some would describe as overly casual or cavalier. I, on the other hand, believe that our society’s attitude toward death is much too serious and sad.
  7. I’m constantly wondering whether I’m crazy or the world is crazy. A lot of social conventions are not rational, and some are outright wrong. But on the other hand, I’m far from infallible, and sometimes have beliefs which don’t make any sense. But it’s always hard to tell which is which.
  8. My brain works differently from other people’s. And so a lot of stuff that is supposed to be intuitive seems confusing or nonsensical to me. For instance, I have a hard time finding things in stores. That’s because I feel safest when I’m close to walls, or in inconspicuous locations. I tend to avoid the central portion of stores, and stick to the walls or the rear of the store. Most people do the opposite, and so I miss a lot of prominently displayed merchandise and a lot of other things that shoppers are supposed to easily find. I also have difficulty with any kind of paperwork, because the way it’s laid out seems counter-intuitive to me.
  9. You have to ask for help with a lot of things that you feel you shouldn’t have to. On one hand, this is embarrassing. On the other hand, it teaches you to form close, trusting relationships.
  10. I always have something to write about.