“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

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How to solve “behavior problems” without having to learn self-control.

Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

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