Saturday, April 23, 2016

I know why your child acts out: an analogous situation

As you all know, I have photosensitive epilepsy. I have had a long long struggle with trying to get people to maybe consider not killing me. Long. Exhausting. Futile.

Today I went to a cross disability conference. Someone not me (hooray!) took the initiative in dealing with the flash issue, I got there & they told me and I was like "hooray!" and then went to get coffee before my first session.

Long time readers & people who know me personally know, I've done a lot of reaching out, conversing, talking to people about this issue. They know that I'm pretty much always met with lies & flashing.

We went to our first session, which was quite good, & a photographer (supposedly they had all been talked to already) flashed his flash. It was too early in the morning for this shit. I chucked my pen at him. Someone from the organization putting on the conference took him out to the hall, told him he really cannot do that, & returned my pen to me.

Not a single other flash happened.

Announcements were made. They were observed.

Throwing a pen worked. "Using my words" has never worked.

Ask nicely? They say "oh of course" or "well we can try but no promises" and it's like a godsdamned disco ball. Tell meanly and they act all put out, like it's the world's biggest favor, maybe they'd be more accommodating if you begged more, and it's a godsdamned disco ball. Enlist someone else to ask and they get tone policed no matter what they do (though it may not be a disco ball). Talk with them for years after they have a board member harass you with a camera, it's all promises and scapegoating a man with high support needs and yet more flashes.

But throw a pen? I believe the behaviorists in the audience would call it "one trial learning".

And it was quick and it was easy. Tactful conversations up a power gradient are stressful. Rude conversation up a power gradient is stressful. Waiting for other people to talk so I don't get upset and throw a pen is stressful. All of these things are draining, hard, and not consistently in my skill set.

And they are ineffective.

Acting out worked. And it was efficient. It was so easy. It actually really pisses me off that I have engaged my impulse control for so long, when doing the easy automatic thing, which happens to be the socially inappropriate thing, was so easy and effective. I'd have thrown a pen a decade ago if I'd known it was this easy.

So, like, maybe when "using your words" is thoroughly ineffective frustration, but dumping a desk works? You're gunna keep dumping the desk.

Yeah, I know exactly why.


Jane said...

Seems that in Ye Olde Bible, throwing tables outside the Temple got their attention too. And then there is Saul Alinsky. Yep. Lots of precedent.

Anonymous said...

Reminds me of something that happened in my life recently (looong story short: I shut down a middle-aged white dude in a class I was teaching because I was sick of him derailing class every single class because frankly I have more students than him to worry about and it's not fair to them to derail every class to center on his sticking point du jour. Sticking my hand out in a "stop" motion and saying "Enough." was more effective than months of telling him politely to bring it up after class and then repeating that for fifteen minutes while he gnawed the point like a terrier with a bone).

Enforcing boundaries up a privilege gradient effectively is rarely socially acceptable.

Anonymous said...

yea i hear you, people tend to not listen when you try to be mature and take the high road

Roman Soiko said...

i endured institutional ableism in the Russian and American healthcare and educational systems All I heard was you cannot do anything you cannot do anything

this continued for years. I had to fight for my freedom I had to fight for everything because of this

I won the state of new jersey in geography I speak 13 languages I am the published author of multiple books in multiple languages

I am a doctor of international law from Oxford and I work at the International Criminal Court and I have a Malawian girlfriend One of the languages I learned is Chichewa which is her language Ndiaphunzira Chichewa yankhulo chibwenzi chimalawi chiyankhulo chimodzi I been told I cannot do this I cannot do this

I was a labeled with a multitude of disabilities by professionals professionals attempted to control every millimeter of my personal professional educational life.

Healing from the abuse of all this Indeed I endured far more abuse from the ableist educational and healthcare system than I ever did from autism. healing from all that took me a long time