Tag Archives: help

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

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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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Some side-by-side analogies

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In the recent Wired article, Volkmar used an analogy that said that acknowledging autistic people’s right to remain autistic, or acknowledging our capabilities, went like this:

Yale’s Volkmar likens it to telling a physically disabled person: “You don’t need a wheelchair. Walk!”

The Autistic Bitch from Hell responded, partially, with:

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn’t move, and then pointed to them and said, “Look at how much help these unfortunate people need because they can’t walk without their wheelchairs!”

And all of this reminded me of an analogy I made several years ago for how psychiatry treated me when I was essentially terrified, despairing about my future, and losing assorted skills day by day while wondering why on earth I couldn’t sustain my previous abilities in some areas. I had no model for existing as a person like who I was, so I variously tried to escape this reality by coming up with an imaginary world that was better than this one, trying to decide that dreams were being awake and being awake was just a really bad dream, trying to force myself to forget that reality existed, trying to turn myself by force of will into assorted kinds of non-autistic people, and eventually attempting suicide. I eventually also figured out that none of that is the best approach to the situation, but I gave it all a really good try before giving up on it as an effective coping mechanism. :-P

The analogy seems really apt when stuck next to Volkmar’s and the ABFH’s, so I’m not even going to add to it:

To use an analogy, it was as if I had wandered into the middle of the street, oblivious to any danger in standing there, obviously missing some combination of knowledge and ability to apply that knowledge, but essentially still me. Someone had run over me and broken my leg. Then, instead of helping me out of the street and fixing my leg, they ran over my other leg and broke that, and then both my arms. Seeing that this was not working, they kept running over my legs and arms and telling me that there was something wrong with me for not getting up and walking away. Then, they got out of the car and started beating me over the head and screaming that there was something wrong with me. This is an analogy, but I believe it is a good analogy to what the system does to people who are different, or simply in the wrong place at the wrong time.

It didn’t just happen to me; it was happening to everyone around me, too. […] The puzzling thing was that while there were indeed many sadists and power-trippers in the system, there were others who no doubt went along with this puzzling behavior because they felt pressured to do so, and others who had been taught that this somehow constituted “help.”

I think those analogies are all interesting to line up side by side, since they’re all using walking as an analogy for other things, but at the same time going very different places with the same ideas.