9:10pm August 2, 2013

I’m talking about things like…

josiahd:

…People who push themselves really hard to stay in words so that they can provide image descriptions.

Why should they have to stay in words to be allowed to communicate or to have a legitimate place on the Internet?

There are competing access needs and it matters from both directions and words need to not be privileged as *the* real form of communication all the time.

i always feel bad when I can’t/have no spoons to add the descriptions…

I always feel bad too.

I used to push myself like that and it lost me the spoons for other things I badly needed to do.

I am so bad at things like image descriptions that it’s rare my paintings have titles. It took my a whole month to give them titles the last time I was required to by a gallery.

I was in awe of the image descriptions the people at the gallery came up with to make the exhibit blind accessible. I could never do what they did, they were almost poetry in themselves.

Sometimes I want to ask for help but afraid of being misconstrued as entitled and demanding. I used to feel free to ask for help, knowing I would help anyone I could myself. Then I had a horrible interaction with someone.

She accused me of deliberately writing in a way she couldn’t understand. I spent all day long trying to change my writing. All I accomplished was slamming my fists into my head hard enough to do serous damage. So finally, in desperation, I asked “Is there anyone around who might be willing to help me do this?”

I asked because on a mailing list I used to be on, we all helped each other out with things like that when we could because there was a huge variety of incompatible communication and comprehension problems among people there. I wasn’t demanding help. I was just asking because I could think of no other options.

And the person who had trouble understanding my writing said “Nobody’s going to help you. Unlike your home, we aren’t your servants here.”

(Which I instantly recognized as… Stemming from the ideas of a couple people who really don’t like me. And take great pleasure in convincing people that I’m a spoiled rich person who gets developmental disability services because I’m used to being waited on by servants and couldn’t handle the thought of doing things on my own. In reality, my family was mixed working/middle class, would never have had servants even if we’d somehow become rich, and we are now poor and going to stay that way. And comparing DD services to servants is a horribly misleading insult. They may do things for you, but they have power over you, not the other way around. And you have to demonstrate medical evidence that you can’t do things, you can’t just waltz in and demand whatever you want.)

Anyway that interaction, even though it happened only once, struck me at a very vulnerable point in my life and I’ve been terrified of asking anyone for help with anything of the sort ever since.

Like I know in my head that I was dealing with a jackass. And I’m even at a point in my life where most of the time I don’t care anymore what people think. But something about that interaction has stuck with me and given me an irrational fear of putting out a generic call for help.

The person, even though I spent six hours trying and trying, basically told me that I could change my writing style at will if I really wanted to, and that I just didn’t care. When I tried to tell her that I’d spent my entire day trying and got nowhere but meltdowns and shutdowns, she accused me of “playing the victim” and said she was the one being harmed, not me.

The harm I did her, by the way? Saying that in my experience people with mental illness are no more likely to be horrible bullying nasty dangerous people than people without. She said I was just saying that to be politically correct and that I shouldn’t negate her horrible personal experiences. I tried to give evidence that I was describing things as much from personal experience as was, and gave concrete examples. At which point, because I was giving concrete examples and not just stating a single sentence viewpoint, my writing was “too long to read”. But if I failed to give examples, I was “only saying that because of politics and not because of experience”. It was like I was not being ALLOWED to communicate what I knew.

(Basically if I said “In my experience mentally ill people are no more dangerous than other people”, she could read it but I wasn’t giving evidence. If I gave evidence, she couldn’t read it and I needed to be more concise. I literally brought myself to the point of physical harm in order to try to both be concise and give evidence, but I couldn’t pull it off.)

Also why is it that whenever I met someone who complains incessantly that the entire world is full of “manipulative people with personality disorders”, it always turns out that the person complaining about them is highly manipulative and would probably meet the criteria for whichever personality disorder is their favorite one to complain about? And I’m specifically talking about people who see such people on every street corner, not just people who occasionally complain about a few people.

Anyway, that is why I don’t ask for help when I can’t do image descriptions. And why I panic slightly when people help me. Not that you shouldn’t help me if you really want. I just get scared that people might see me as demanding their help and feel obligated.

I feel kind of stupid that this one interaction from just one time so many years ago by someone whose opinion I should not even value, continues to make me feel ashamed for wanting or needing help.

Up until that day, I saw that kind of help as something any person could make a general request for, and any person could either help or not help if they wanted and were able.

But somehow that one interaction turned something innocent, innovative, and good, into something that makes me self conscious and shame. I hope someday i get my innocence and confidence back.

Notes: