You could just see the gears turning in her head: this was something grandma uses, not young women her mother’s age. Why did this grown-up need a cane?

So I told her, sometimes I get REALLY dizzy, and the cane helps me keep from falling down. And she just nodded.

Also, I’m a big fan of the stylish canes. I have a rose-print, a copper marble one, and a black one with tree frogs. I DON’T have any that are “plain.”

I am frequently performing, for brief windows of time, the performance of able-bodied. Yet this makes me feel even less understood when I don’t conform to that performance. People don’t know, for example, that when I’m lying down in some public place, it’s not just because I’m lazy/weird, but actually because I physically can’t bear to sit or stand at that time. On the whole I look so damn normal, so I guess the alienation comes in because I look like everyone else but my internal reality of pain/avoiding pain is so constant, that I’m not really living in the same narrative as anyone else whenever movement is involved. That said, it is much easier in my small town where people know me and understand my needs – i.e. at our local organic shop they take out a stool for me to rest on at the counter while they ring up my groceries. Something so tiny that makes a world of difference to my morale.

I guess the stress on this is compounded by my feelings of being judged. I think most people wouldn’t realize how much our society polices physical conformity in terms of how we conduct our bodies – until you have the experience of not being able to conform. Sometimes I receive judgmental comments from acquaintances (and even friends! grr) who wonder why I’m not jumping up to help out with things that are easy for everyone else; sometimes these are voiced and other times I just feel it in the way the person treats me. Other times it’s jokes about how I’m always lying down (whoops! would you say to someone in a wheelchair, ‘haha, you sure are in that wheelchair a lot, that must be nice.’) Other times it’s from people who don’t know what’s going on with me; like being nearly kicked out of a music venue by a very intimidating and hostile bouncer when I was lying down in the aisle, because there was nowhere else to be and I had gotten into too much pain to stand or sit. If I had, say, a wheelchair, I think I would have been treated much more honorably there. Surprisingly, once when I tried using a wheelchair for a day to go to an event that would have entailed too much walking, I felt an odd relief: I was *seen*, people were compassionate, they wanted to help me, open doors, etc. Suddenly the world no longer felt populated by people who don’t understand/aren’t helping, because now they had put me mentally in their “disabled” category. It was oddly liberating. (Still, I was also quite conscious that I was being seen and treated as an “other”.)

Yikes this turned into quite the diatribe!
Mostly I just wanted to thank you for helping me visible-ize my own experience to myself, and to say that I hear you loud and clear. I would love to get myself beyond complaining to a more constructive way of being with all this. But at least getting clear about the dynamics feels like a start.

Like your daughter, I am somewhat prone to staring, which may be one of the reasons that I feel more comfortable with others doing it in my direction. I don’t at all mean to stare, but I end up doing it because I’m trying to understand things about “normal” culture that feel quite “abnormal” to me. Plus, I don’t read body language or subtle facial expressions intuitively, so I often look at people a little longer than “normal” while I’m processing the whole thing. I’ve done that all my life; I will study people’s faces and figure out where they’re at, but it’s not just a passing glance, and it sometimes calls people up short. For instance, a few weeks back my husband and a friend and I were all talking, and I saw a nonverbal facial expression pass between my husband and my friend, so I stood there looking at my friend’s face for a moment while I analyzed it. My friend looked at me and said, “What?” I said, “Oh, sorry, I didn’t mean to stare. I just have to analyze nonverbals and that takes a little while.” As the mom of an autistic kid, she got it and it was no problem.

So at this point, I’m taking staring as an opportunity for contact. It’s amazing to feel oneself objectified by a stare and then step out of it and become a subject for the other person. For me, the problem isn’t so much people staring as the way that some people refuse to stop staring when asked. I have friends who will ask people to stop staring and they don’t. I haven’t had that experience yet, but I can imagine how annoying it is. I understand that some people can’t help but stare, and if there is a good physical or cognitive reason for it and they have a hard time stopping, it wouldn’t bother me. But if they can stop and just plain won’t when asked to — that’s rude.

That’s produced a certain comfort about being myself that is quite different from my usual struggle about how to present myself, and I think that has a lot to do with the ease of some of these interactions. I’m not caught in the weird ambiguity of “I’m disabled, but it’s invisible, until you start talking to me for awhile, in which case you notice something different, and then you start noticing that I’m *really* different, and then you decide that I’ve somehow defrauded you because my disbility is invisible and you never would have started the interaction in the first place if you’d known.” There is no ambiguity, no sense of “What? I thought you were normal!” followed by pulling away. If people are going to pull away, they avoid me up front, which I much, much prefer to stepping into situations in which I’m waiting for the other shoe to drop.

I have sometimes thought about getting a hearing aid to signal that I have an audiological condition. A hearing aid would actually be the last thing I need — my hearing is almost completely unfiltered and doesn’t need to be amplified — but it would let people know “hearing problem here.” It’s felt somewhat appropriative to do that — after all, I’m not HoH — but I’m rethinking that now. I *do* have a hearing problem, and there is no other marker for it. And certainly, if I used a hearing aid, I would turn it all the way down — or off.