Daily Archives: June 19, 2007

Jun19

If you recognize me.

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This is a purely pragmatic post I’m trying to write here. I don’t mean any offense to the guy I talked to today. I know he didn’t mean anything bad and didn’t know any of this stuff. He was perfectly nice to me and had no way of knowing what was going on. Etc.

If you recognize me in public. And you don’t know me. (Knowing me online counts, as in interacting with me a fair bit on blogs and lists and stuff. That’s fine. That’s knowing me for these purposes.) There are some things you might want to know before you decide to strike up a conversation.

Today was one of two days this month I’ve been outdoors for anything other than a medical appointment. I was going to the bookstore and then I needed to take care of something at the bank. The reason I haven’t been able to go out much is the grass pollen, which is my most severe allergy, and I’m still not fully back to normal from the last asthma mess. (That’s why, if I’m outdoors, you’re likely to see a pollen mask on me, although I take it off indoors.) As in, I haven’t even crossed into the mild range of asthma yet, although I’m getting better.

I can only go out when there are staff with me. Staff come in shifts at certain hours. The morning shift ends at 12:30.

I was on my way out of the bookstore around 11:30 when someone saw me, said he’d seen me on TV, and struck up a conversation. I have a very hard time getting out of conversations. I wish my staff had been there. She wasn’t there that moment because she was going outside for something. I had no way of contacting her. When I’m concentrating on talking to someone I have a really hard time simultaneously figuring out how to stop talking to someone and why to stop talking to someone (or why to do anything for that matter). It took everything I had to get out of the conversation half an hour later.

Half an hour later it was too late for my staff to take me to the bank. It was also too late for her to wash my pollen mask, a task which had to be moved to the next shift, and depending on how long it takes to dry it might affect my ability to go out to a planned event tomorrow.

I am not trying to be unfriendly. I am not trying to imply that anyone who has done this to me has caused all these things on purpose. But please be aware that if I’m out lately, I’m out on a time schedule, that the amount I have to go out affects my health in various ways, etc. So I might make an exception if I already know the person (the same way most people would make some exceptions, even ones that change their plans or health, for unexpected friends, including online friends), but if I don’t know you already, then getting to know you right then isn’t going to be the best time. And that since I have a really hard time disentangling myself from conversations (because of the amount of attention the conversation itself takes), it’s probably better not to start one unless you’re going to introduce yourself as someone I already know or something, because staying in a conversation with you for half an hour doesn’t mean I want to, it just means I’m doing what I think I have to, which is come up with new things to say in response to whatever I can parse out of what you’re saying (and I am likely parsing far less of what you’re saying than it might sound like, I’m very good at sounding like I know what people are talking about when I don’t).

And (probably obviously) this doesn’t apply to social events or conferences where the point is partly to meet new people. And unfortunately probably most of the people likely to do this to me have not read this blog. But I thought it was worth mentioning in case anyone runs into me in a store or something (this sort of thing has now happened more than once, including while trying to visit and advocate for a friend in the emergency room, although in that case the friend was recognized too I think so that got interesting).

Jun19

Addition to library: And people still fail to get it, again and again.

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And People Still Fail to Get It, Again and Again

By a student who’s been fighting for accessible education for a long time.

Quote from it:

These things– accomodation, and related issues– are rights, not privileges. But even if I can acknowledge that intellectually, I’m so used to having to shut the hell up in order to get anything at all that my gut reaction when anyone gives me any kind of accomodation at all is fear— waiting for the other shoe to drop, waiting for them to decide I’m a horrible person who’s just making excuses and is trying to drag out some manipulative game to see just how much of a free ride I can get, and to decide I deserve nothing at all. I’m seen as some kind of puppetmaster, when in reality I’m the ones on the strings being jerked around at everyone else’s whims.

I don’t think people get it. I expect nothing. I expect nothing to be given to me. I expect to be called a liar and manipulator and an excuse-maker and to be told that the system owes me nothing and that I can sink or swim. I expect to be forced to plead, beg and grovel in order to get any kind of accomodations at school, extended deadlines and the like, and to be seen as a manipulative liar if I still can’t do it. I expect to be forced to beg like a dog for food, or water, or sanitary napkins, or the right to go to the bathroom, or similar things, and perceived as a childish brat who needs to be punished and taught a lesson. I don’t know how to communicate to people that I expect nothing, or how to stop them from believing I have a sense of entitlement, when in fact it’s exactly the opposite. The fact that I expect nothing doesn’t mean I should receive nothing, but it does mean I expect nothing, and people should take that into account when working with me.

I have to say I identify with all that. I don’t actually expect to be taken seriously or treated like a human being.

Jun19

Mental age is not acceptable.

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In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.