This post stems out of part of a long reply to someone in the comments section of my last post. She talked about the kind of environment where even reactions to pain are seen as bad behavior, and the way this shapes a person, to live in a place where the fight-flight response is constantly triggered, but there is no chance of fighting or fleeing. There are, certainly, psychiatric terms for all of this, but I’m not going to get into those in this post.
Often, people tell me that I am qualitatively different from other people with developmental disabilities. They tell me this on the basis that I understand many of my rights and stand up for them. I will admit this is a qualitative difference in a way from many (certainly not all) people who’ve been in the system, but it is not a static difference.
I want to describe what I was like immediately upon leaving institutions.
I did not know I had rights. At all.
When I say I did not know I had rights, you may be thinking of abstractions. I am thinking of something like, I did not know that I was allowed to think my own thoughts. When someone suggested that I repeat this to myself, I thought even thinking about it would lead to my death, because that is what I had been explicitly told.
I did not know that in my home I had a kitchen. I thought I had “kitchen privileges”. I thought every single aspect of life was a privilege that I did not deserve and that could and would be taken away at any time.
Every single aspect of my emotional and mental processes was bent in on itself, and mainly concerned with being an insignificant nobody as best I could. I was not good at this, and in fact at times my attempts to disappear made me more conspicuous. But I had been trained to be a non-person and I tried my best to comply. I did not have much thought or energy left for anything else.
It did not work, because most autistic people are naturally quite conspicuous. I could not avoid meltdowns. I thought that every single meltdown I had was going to land me beaten up or killed or tied down, but I could not stop them and this scared the crap out of me. Even more normal things scared the crap out of me, I was trying to be an impossibility, a real person cannot be a non-person, no matter how hard they try, and I was a real person.
That’s what psychiatry tends to forget, is however “damaged” a person may be by an experience, there’s a part that the damage cannot touch about them, even if they can’t see the part, even if all their conditioning tells them to not look at that part and that place, even if looking at that aspect of oneself creates terror and shutdown. Psychiatry refuses to look at that aspect of people either, or it would find far more resilience in everyone than it does.
I was a lot like a wild animal that has not been tamed but that has been caught in a cage and not allowed to move on its own for years. When the cage was lifted, I did not even have the capacity at that point to notice. I took the cage with me in my head. Which was just fine with any and all professionals in my life, that’s where they want the cage. They brag about letting people out, but so often it’s by creating cages in people’s minds.
I had a friend a couple years back with a cage in his head, and he’s still physically imprisoned as well. I don’t know if I’ll see him again, but I remember talking to him about this stuff, and he was astonished that I knew what he was thinking so often. He asked how I knew all this, and it was very simple: Cages don’t create a particularly varied response after a period of time.
I had to learn that I could think, that I could move freely, that I could use appliances in my own home, that I could eat three meals a day, that I could choose anything about anything. It was like a muscle atrophy (and I think I had some of that, too, from prolonged immobilization) only it was my head-muscle that wasn’t working too well.
Dave Hingsburger talked in a video called “The Ethics of Touch,” about providing services to people with severe disabilities, who had no formal communication system, and needed assistance with transferring from a wheelchair. He talked about how if everyone approached this in a respectful way, and lifted the person gently after explaining to her exactly what they were doing (which, he said even if she didn’t understand the words, she’d know something different was going on), then she would become “addicted to respectful treatment”. If someone tried to grab her and hoist her without permission after that, she’d stiffen up or arch her back or do something else to show resistance. He had seen this happen, people becoming “addicted to respectful treatment” within a matter of weeks.
Which is why I hate the idea that there is some innate capacity I have that others don’t. This capacity is actually possible in anybody. It doesn’t have to do with understanding too many abstractions. It has to do with a gut-level feel of what’s respectful and what’s not, what rights you have and what ones you don’t. It’s something that most people have, but they learn from their society so early which rights they have, that it’s invisible to most people.
The main thing unusual about me is I have had opportunities that a lot of people haven’t — contact with people who were outside the system enough to show me another way of thinking and living. Not that I don’t still at times get confused about what rights I have, but nothing like to the level of before.
This is why, though, I am so passionate in standing up for rights, because I know exactly what it’s like, not only not to have any, but not to know that they exist because not having any is so ingrained in your head that you can’t think of anything else. I have seen people justify violating people’s rights — in some pretty fundamental areas — by saying “They don’t know they have any rights, they’ve never had any, so it’s okay.” I find this practice despicable. And how on earth can a person learn they have rights if they are constantly treated as if they do not have them?
I can so easily see myself presented at some point as a classic example of a person who has too little conception of rights to bother with, or who is too “damaged beyond repair” to do anything with, I’ve heard both of those said about me many times in the past. These days, though, I’m “different” than that. Yeah I am, actually, but not in a way that can’t be learned.