as small as a world and as large as alone, thegreenanole: madeofpatterns: ...

6:28pm October 31, 2013

madeofpatterns:

warlocksexalways:

Disability “allies” who care more what authority figures say about us than what we say for ourselves (ie anti self-diagnosers)

Disability “allies” who think our peer support is disastrously preventing us from “getting the help we need”.

Disability “allies” who don’t allow actual disabled people to lead self advocacy events and trainings.

And/or who tell other self advocates not to listen to the self advocates who are actually talking about improving services and making sure our rights are respected and stuff.

Omg I went to this horrible “self-advocacy” meeting once where I basically got *WRITTEN UP* for engaging in actual self-advocacy and telling off the “facilitator” for controlling the voices of other disabled people.

Written up. As in. I went “AWOL” even though I was an adult allowed to go wherever I wanted, with or without leave, so I was written up as going AWOL. She wrote me up as hitting her when I didn’t hit her or even actually touch her (I did brush by her sleeve near her wrist at one point but everyone else present agreed I did not “hit her really hard on the upper arm” or anything remotely close that could even faintly be mistaken for that, and she could not produce any evidence that I had). And she wrote me up for “trespassing” because I couldn’t stop walking (movement disorder) and walked into a fence before I could stop, after leaving the room. Which was not, legally, actually trespassing, in any sense of the word.

I complained to the guy who was supposed to be the disabled guy who sits in on the meetings to make sure that everything is happening fairly. He was a friend of mine. I hoped he’d listen.

He said he’d never noticed her controlling anyone.

I told him that she controlled people primarily with body language and visual cues, things that she was deliberately doing because the guy watching her was blind and couldn’t see them.

He got very uncomfortable at that point.

He told me she was his boss. She was his boss and he was the one who was supposed to make sure she behaved ethically. No conflict of interest set up by the agency there.

Then he said:

“You have to understand… I really like my job. I like my job a lot. I’ve never had a job that pays this well. I’m going to have to ask you never to bring this up with me again, it’s too upsetting.”

So… yeah, the guy who was supposed to be making sure they were ethical, was too afraid of losing his job, to actually do his job.

I could tell he believed me, he just didn’t want to. And the guy was really terrified of conflict in just about all forms. He was also unaware of some aspects of having a cognitive disability, because his disability was entirely physical. I don’t have an intellectual disability but I do have cognitive disabilities in common with many people with intellectual disabilities so I was more able to see the ways that she controlled people, because people have used those same tactics on me. She also told me that my communication method took too long. And wrote me up (how can you write a person up for this) as “having a huge sense of entitlement” for, you know, wanting to be treated like a human being and wanting to see everyone around me treated like a human being.

She also told me that I was destroying the trust she had built up carefully with all these people.

And a lot of other terrible stuff.

My staff person was also written up, for defending me as she screamed at me about what a horrible person I was. She did this after most people had left so the only real witnesses were me and my “renegade staff”.

Renegade staff is what she referred to my staff person as.

Renegade. Staff.

For defending me.

Against obvious horribleness that any decent staff person would be defending their client from.

And she did her best to make sure I could not participate in local self-advocacy activities and that the agency she worked for (who controlled all DD services in the area) saw me as automatically bad and horrible.

She was a total asshole, mind you.

I saw her using looks to control people.

I saw her cutting off people with slow speech.

I saw her controlling what people could and couldn’t say.

I saw her telling people what and what not to say.

And she had this horrible condescension to her that just oozed off her.

And she controlled me. She did it by neglecting everything she told me I “had to understand” about everyone else there. "You have to understand they process information differently than most people do.“ No shit Sherlock, I understand that better than you do. But she basically deliberately used my information-processing difficulties against me, both by simultaneously denying they existed, and making it impossible for me to react or respond to her because she was using them to manipulate me into being unable to respond. I’m not being very articulate there but I expect anyone who’s had their information processing difficulties manipulated in that way knows exactly what I mean – it’s done by simultaneously manipulating those difficulties and denying their existence, either overtly or covertly.

I wrote this about the experience when it happened about eight years ago:

https://web.archive.org/web/20051030145559/http://www.autistics.org/library/understand.html

It’s still fairly traumatic to think about and read about it all over again. It was a terrible experience, I felt like she was crushing people with one hand, crushing me with the other, and keeping her hands pushed apart to keep us from connecting with each other. I know she saw me as a threat because of the bullshit writeup I got in my behavioral file or whatever. I still have trouble believing she had the audacity to claim to be for self-advocacy and then write up a 25-year-old adult as "AWOL” because I left a room without her fucking permission, and to make up a bullshit assault story. (I did walk towards her angrily but then I turned away and my hand brushed her sleeve, not even making contact with her body even through the clothing. But even in the heat of the moment there’s no possible way you could legitimately confuse that with being “hit hard on the upper arm”. I remember asking “Um… did she show you any injury that would be consistent with being hit that hard?” They said “Um…. no.”)

Anyway… horrible experience for me, but worse experience for the self-advocates who couldn’t walk away from her. It was clear that in that room, the only agendas that mattered were the ones that were agency-approved. And that is NOT self-advocacy, that’s a farce.