2:04pm July 24, 2013

The physical disability community is not “the disability community” no matter how much they think they are.

When people say the disability rights movement, most people think of the mainstream disability movement. It’s dominated by white men with physical disabilities, especially paras and quads. And very very white and middle class in general.

But it’s not the whole disability movement or disability community. It’s just the one that had claimed the title “the disability movement” because most people think physical disability when they think disability.

But there is also a bunch of psychiatric disability movements. Consumers, survivors, ex patients, mad pride, hearing voices. And there is the developmental disability movement. And the autistic movement. And the Deaf community. And on and on and on. Then there’s the cross disability movement, but as a friend of mine says, lots of people think cross disability just means both Quickie and Invacare". (Two different wheelchair manufacturers. Wonder where that leaves me as a Permobil.)

I’m very leery of the “coming home” experience many disabled people have with disability communities. It seems to create an intense and unreasoning loyalty to the group in question, which renders self examination difficult to impossible, something to become defensive about rather than embrace.

But if I have a home in any disability community, it’s the developmental disability self-advocacy community.

One thing I like about it is that we are not united by any type of disability, except that it started in childhood. The main disabilities involved are cerebral palsy, intellectual disability, autism, epilepsy, and brain injury. We have footholds in the domain of physical disability, cognitive disability, psychiatric disability, sensory disability, chronic pain, chronic illness, and learning disability. They always claim in medicalized contexts that learning disabilities such as dyslexia, and psychiatric disabilities, don’t count. But the reality is that even within the six main disabilities represented, psychiatric and learning disabilities can be closely linked to some of them. So in practice it happens.

We have been brought together, not by a common diagnosis or experience of our bodies, but by which people ended up put together in developmental disability institutions when they began forming. Developmental disability is not just another word for intellectual disability, it covers an extremely wide range of people. It’s similar to psychiatric disability, in that neither one is a classification that makes medical or experiential sense, it’s an accident of history.

But being an accident of history gives us our diverse disability experiences. It prevents us from uniting through common experiences of how our bodies function. Which is a good thing when you’re trying to unite for social change. The more diversity the better.

We are also diverse in other ways. We come from every possible economic background. Many of us are poor and working class as adults, because that’s what happens to a lot of disabled people. But our childhood could have been any mix of classes. We are also racially and ethnically diverse. People of color trend to shy away from the physical disability movement because of how white it is, and same with the autistic community. But that doesn’t happen so often with the DD community. I get the impression that developmental disability tends to be such an intense common experience, especially for people who were in special ed and the adult DD system, that the community involves everyone. Plus people of color are more likely to be misdiagnosed with intellectual disabilities and grow up in this system. Whatever it is, the DD community seems to be the most diverse disability community I’ve ever encountered. In every possible way.

There also isn’t a lot of fuss about who belongs and who doesn’t. I’m sure it must happen occasionally, but I’ve never encountered people in the DD community gossiping about whether this or that person is truly disabled. In my experience that’s more common the more specifically a community revolves around a medical diagnosis. It’s also fairly common in the phys dis community. But I’ve never once seen it in the DD community. We gossip about plenty of other things. My favorite is to gossip about who the worst and best staff is and why. But we don’t tend to gossip about “this person doesn’t belong here”. Which creates a much healthier environment.

The main problems in the DD community involve staff taking over, and disabled people passively following. And staff setting the agenda because they believe we are not capable of setting our own. This happens more easily with us, because we often need staff to help us with cognitive tasks such as organizing. This leaves them in a position where instead of helping us do what’s important to us, they insist on taking over and making us do what is important to them.

I once attended a “self advocacy” meeting run by an incredibly condescending facilitator. She told the “leader” everything to say. She taught everyone to basically recite things she told them. She told me my means of communication took too long and I shouldn’t say anything, even though there were people who talked slower than I type. And she controlled people by gestures. Eye gestures, hand gestures, face gestures, she used to tell people when to speak and when to stop speaking. This was very cunning of her. Because there was a man with cerebral palsy, put there to make sure she couldn’t take over too much. But he was blind. So she did most of her controlling through a means of communication he was literally incapable of detecting.

And she controlled that man in another way, very common when they choose a DD person to represent us in a services agency and supposedly protect us and speak up when abuses of power happen. I told the man what she was doing to control people without his knowledge. This is what he said, more or less:

“Oh god. You have to understand… I really love my job. I have never made this much money in my life. That woman is my boss. I can’t risk getting fired. Please just… never speak to me about this again, I can’t handle it, and I don’t like confrontation.”

That from the guy they supposedly hired to protect us from abuses of power. And they had him under their thumb in a thousand ways.

I tried to talk to the woman running the group, and she became very condescending and controlling. I sort of lunged towards her and ran out of the room. I walked across the street and due to my movement disorder I couldn’t stop walking until I hit a fence.

I came back in with my staff person. And I tried to apologize to the woman for running out. And she started screaming over the top of my communication device. I was so overloaded that the only words I caught, over and over, were “YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND!!!" My staff person tried to reason with her but there was no reasoning.

My staff and I both got in serious trouble. That woman made sure the agency wrote me up for all sorts of things that didn’t even make sense.

She claimed that I punched her really hard on her upper arm. There were witnesses. All I did was my hand came near her sleeve – at the wrist – as I ran out of the room. I didn’t touch her and I sure as hell didn’t punch her or even swing at her. Everyone who saw it agreed. But she didn’t like me criticizing her, and she had a lot of power in the agency, so she tried to have me written up for assault.

But the rest was even more ludicrous. I "went AWOL”. And I was “trespassing”. I am an adult. I am allowed to leave any building I want to leave, at any time. I am not required to get anyone’s permission. Also, in California, walking into sometimes driveway until you hit the fence is not trespassing, and it’s especially not trespassing when it’s caused by a movement disorder. So it’s impossible for me to be AWOL, absent without leave. And I wasn’t trespassing. And I never hit her or even touched her, let alone punched her really hard on the upper arm. The lack of any mark or bruise should’ve been a major clue. So should the fact that she reported me to the agency, not the cops. All three of these accusations were her revenge, as a powerful staff person, against me for speaking out about how she used power. It happens in the worst parts of the DD system constantly. It’s a way of keeping us under control, and a kind of slander.

Meanwhile, for standing up for me when I was being screamed at, my staff person was labeled a “dangerous, renegade staff”. And she got a lecture from the higher ups at the agency as well. We both had to go in and get talked to by someone in the agency about our “bad behavior”. So staff who stick up for us get in trouble too.

That’s what happens when self advocacy groups get taken over by agencies and institutions. Often self advocacy just gets turned into a word for a recreation group (recreation and self advocacy should never be mixed, even if it’s the same people involved in both), or the “group facilitator” takes over the agenda. And anyone who speaks out gets written up for bad behavior. But fortunately a huge amount of the community is not like that at all.

I wrote the following after attending that group:

http://archive.autistics.org/library/understand.html

But anyway. While that’s the really nasty underside of the DD community. The part that’s run by staff, not by us. The rest of it can be some of the most amazing communities I’ve ever been a part of. (And yes, that includes many, many people who want to use person first language. They are not brainwashed. They are not stupid or out of touch. They are not doing it for the same reasons as condescending nondisabled people. Please respect their choices.)

I’ve been part of the DD system for pretty much my whole adult life, and a little bit before that. Yet most people would never think of it being part of the disability community.