(I don’t have the time or energy to get into a discussion of what “treating adults like children” says about how people treat children. Please don’t assume I haven’t thought of that. And, as usual, this applies to far more than the autistic community.)
Last night the discussion group on Second Life veered into the topic of non-autistic allies and their involvement in autistic advocacy efforts. A few of us talked about the fact that often what happens, is instead of assisting autistic people to run our own organizations, our “allies” decide somewhere along the line that they make better decisions than we do, have better social sense than we do, etc. And start making the decisions for us and very much disliking it if an autistic person starts questioning their sudden presumed authority.
I am guessing this would be in the same category as Phil Schwarz’s pseudo-allies. A quote from that:
There are at least three varieties of pseudo-ally and pseudo-ally behavior:
- The Missionary — gets points for helping us, but the problem is that they are often helping us their way. They get points; we get used.
- The Vulture — exploits us, often making money off our needs, our work, or our lack of power. When a Vulture makes money off our work, it is often more money than we make off of it. The Vulture started multiplying at an incredibly fast rate after the passage of the Americans with Disabilities Act.
- The Do-gooder — motivated by a conscious desire to help the less fortunate and a subconscious desire that is patronizing and condescending.
How does one tell a true ally from a pseudo-ally? Sometimes the language they use is a dead giveaway:
- “Courage”, “inspirational”, effusive, excessive, unrealistic praise
- “These people,”; “us” and “them” rather than “we”
Some true allies started out as pseudo-allies — but listened and learned and grew and re-examined their own motives and assumptions.
True allies understand the distinction, and the problem.
But one thing it suddenly made me think of, is another aspect of the dynamics at work here: Many autistic people are totally accustomed to having people take over, being told that our decisions aren’t as good as other people’s, and so forth.
I’ve made a study of power dynamics for a long time. I’m not ignorant about the things that can happen between staff and their clients in the developmental disability service system, for instance. I’ve done a lot of observation and reading, and am fairly good at spotting patronizing or controlling behavior.
But even with all that background, I still miss it when it happens to me. A lot. I don’t understand until later, or I don’t understand until I see the contrast between how I am treated and how others are treated.
One time, as an adult, I went to a meeting. It didn’t go well. After the meeting was over, I attempted to approach the person who ran the meeting. That didn’t go well either. I restrained myself from doing anything particularly violent (although I was later written up for violence — long story, another day) and walked out of the room. I later found out that I was written up as going AWOL.
Understand: I am an adult. I am not institutionalized. I am not in prison. I am not in the military. I do not know a whole lot of other kinds of adults who can get written up as AWOL for storming out of a meeting in the middle, let alone at the end. This went on my permanent record.
Understand also: I am so used to being treated like this that it often barely registers.
When people tell me they’ll go to the store and buy something, then buy something different without my authorization, and pretend it’s the same thing. When people buy me little “treats” with my own money and expect me to be excited when I see them. I don’t notice this.
I can’t put my finger on the difference between how my staff (who I consider reasonably good staff) treat me, and the way Laura’s staff treat her. I see her staff interacting with her quite often, and I see my staff interacting with me. There’s an intangible difference. While she has plenty of her own staffing problems, her staff in general are less paternalistic, less patronizing, less apt to assume she’s incapable of decision-making, less apt to make decisions without even consulting her.
And there’s an air of respect to them. They don’t get in as close as my staff get to me. I don’t know how to describe that, I view it in terms of spatial relations. My staff try to get in further, they are more invasive, they have less sense of boundaries. Her staff treat her the way one adult treats another adult. We get roughly the same services for roughly the same reasons, but the difference is phenomenal.
The difference between us is that, while we are, both of us, cognitively and physically disabled (we’re both autistic wheelchair users with an assortment of health problems — different reasons for wheelchairs, often different health problems, but same general categories sociologically), I get services for cognitively disabled people and she gets services for physically disabled people.
But to get back to my main point, many autistic people are used to being paternalistically controlled. Those of us who question things the least receive the most praise in organizations run mostly by pseudo-allies. Those of us who insist on being treated as adults are likely to be seen as hostile. Because treating us like children comes so naturally, and we have so much come to accept it, that our trying to breach that is interpreted much the way many adults interpret children: As a childish tantrum rather than a legitimate assertion of our equality with the understanding that autistics need to always be in genuine positions of power in legitimate autism organizations.
A note there: Positions of power doesn’t mean finding the most submissive, status-quo-upholding auties you can come up with and putting them in tokenistic pseudo-power roles while grinding more assertive auties into the dirt. I have even seen situations where one autie or another is “the good autie”, and everything becomes “Why can’t you bad auties be like the good autie?” or even “Can’t you see you bad auties are hurting the good autie? Aren’t you ashamed of yourselves?”
The role of allies is to assist and support, not to take over and control and paternalize with occasional benedictions from “good auties”. And auties ourselves need to figure out how to notice when this controlling behavior is taking place, because so many of us (me included) are so accustomed to it that it’s all but invisible to us.
Ballastexistenz 