Posted in Developmental disability service system

Walls and doors

An Accent 800 communication device showing the main Unity screen with some of the words from this post at the top.
How I wrote most of this post.

You think I don’t see what you are doing.  You think what you are doing is okay or even good.  Sometimes you don’t even notice what you are doing.  But you are doing it.  And I see you.

Understand that, if nothing else:  I know what you are doing to me.  I feel what you are doing to me.  I may not be able to put into words exactly what you do or how you do it.  I might not be able to resist the ways you are changing me.  I might not be able to stop you.  But I see you, I know what you are doing, I am awake and you can’t put me back to sleep.  And now, finally, I am able to tell you and the rest of the world what you’re doing and why it’s hurting people.

First, though, who I’m talking to and why.  Because it is important to understand what I am and am not saying, and to which people  And who I am and why I’m writing this.  Every thread woven into this fabric is important.  Leaving out any will only confuse things.  I’ll start with myself.

First I’m a human being.  I don’t want to go into too much detail, so this is the information that seems important.  I am 37 years old.  I have been a client of the developmental disability system for my whole adult life.  I’ve spent all my life fighting to be a human being in a world that sees people like me as something closer to things than people.  Words have never been easy for me, but I’ve struggled to achieve the ability to see things nobody talks about and then describe them in language.  I have achieved a lot in that area, but it’s come at the cost of other communication abilities.  Hence I can sometimes write eloquently about complicated topics, yet not be able to tell you something supposedly simple, even if it’s important.  And each topic can take years to learn the words for:  Please remember I’ve spent 37 years with no ability to describe today’s topic, and only a day and a half able to tell you what I can see.

So that is all you need to know about me right now.  So I’ll tell you a little about you.  Because my intentions are different towards different people as I write this.

Some of you are nothing but cold-blooded manipulators.  You know already what you do and don’t care.  I will tell you this:   I see you.  And most people in my situation are perfectly aware of you.  My goal is to show the rest of the world what you do, so that you will be less able to do these things.

Some people are not sadistic or are convinced, one way or another, that what they do is okay, or at least harmless, or at least they mean well.  Their behavior is not okay.  To you, I want to say I see you too.  I do care that some of you mean well or don’t fully understand the harm you do.  But the harm remains, anyway.  The more you hide from the reality of what you do, the more you’ll keep doing it.  And people like me bear the brunt of the harm.  So you need to stop a denial that might protect yourself but doesn’t protect us.  And you need to stop finding ways to justify your actions to yourself.

Some of you, like me, experience this manipulation firsthand.  If you’ve never known what was happening, I’m sorry to be the bearer of bad news.  If you’ve already noticed, then I’ll say you’re not alone.

But I have a broader message to everyone.

We see what you’re doing.  We know what you’re doing.  We feel what you’re doing.  We understand what you’re doing.

You manipulate us by restricting our choices.  You make it easy to do what you want us to do.  You make it more difficult to do what you don’t want us to do.

Imagine our possibilities as an open field where we can walk in any direction.  You put walls in the field so that we can’t walk in the directions you don’t want us to walk in.  You then put doors in areas you might want us to walk in.  Then you hold open the doors.

So you stop us from doing what you don’t want to do.  And then you make it easy to say, “Here’s the only direction you can go.”  Even though the only people restricting which way we can go is y’all in the first place.

The walls can take the form of discouragement or threats.  They can also just take the form of making it harder to do things in those directions, in ways that can be very subtle.

Let’s say you want me to engage in some independence theater with you.  So you want me to bend down and put cat food in the cat food bowl.

So any time I ask for help or mention the cat is hungry, you basically ignore me.  You may pretend I didn’t say anything.  You may try to make yourself look so busy that you couldn’t possibly crack open a can of cat food and spoon it into a food bowl for 30 seconds.  You may talk about all the things you have to be doing right then.  You might say “I’m not doing that for you.”  You might keep doing what you’re doing, pointedly ignoring what I said.

That’s the walls.

Then the door is that you will try to make it easier for me to just do the cat food than to ask for help.  You might ‘redirect’ me towards doing it independently by telling me out loud that I can or should do it.  You might tell me exactly where the cat food and other supplies are.  You might even get the supplies out and give them to me or put them near me physically.  All of these things are opening doors towards me doing it myself.

That is just one example.

It doesn’t have to be independence theater.

You can do this with literally anything you want us to do:  Actions you want us to take and not take.  Thoughts and feelings you want us to have and not have.  All you have to do is make it hard for us to do anything but what you want us to do, and then make it easier for us to do the thing you want us to do.

You have no problem with this, usually, because you think you know better about our lives and choices than we do.  You think you know what’s best for us.  The only issue is move us in that direction.  So you do.  And if you are skillful enough, you can maneuver us into doing what you want without ever saying exactly what it is you want out of us.

But we see you.  Oh, we see you.  We see what you are doing.   And that is why I am writing about this.

I owe more than half of this blog post to the Unity software on an Accent 800 by Prentke Romich.  I started writing it a long time ago and finished it today as part of my series on what the developmental disability service system can be like.



Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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