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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This post is mainly for three sorts of people, who are in some ways really one sort after all.

I’m going to post a link.

If you ever argue that autism and/or Asperger’s is “not a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something positive in contrast to typical people, then please read it. The person who wrote it directed it mostly at you.

If you ever argue that autism and/or Asperger’s is “a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something negative in contrast to typical people, then please read it. This goes double if you argue it for something you call “low-functioning autism” but not for other autistic people. This goes triple or even more if you want to cut “high-functioning autism” and/or “Asperger’s” off of the “autistic spectrum” because they’re “not disabled” and “low functioning autistic people” are disabled. The person who wrote it only directed part of it at you, but from the standpoint he’s talking about, your viewpoint is nearly identical to the viewpoint I described in the first paragraph.

And of course, the viewpoint he’s talking about is also really important for you to read if you’re the sort of person who says it’s “neither an ability nor a disability,” or “composed of both abilities and disabilities,” or “both an ability and a disability,” or similar wording, because it’s also from the viewpoint he’s talking about pretty identical to the first two paragraphs.

And for everyone else, including those who know the general viewpoint he’s coming from already, the advice he gives is still really good, so go read it too.

His post is called Welcome to the disability community. In general, go read it. Multiple times if necessary. Then seriously consider taking his advice.

Last night, I got involved in a discussion of disability rights with people who mostly had some background in that area. Some of them were autistic and some of them weren’t, but most of them had heard, at least somewhat, of the standpoint on disability I come from, which is that disability is the intersection of your body with a world that has planned for some sorts of people and not others, when you’re one of the “others” that wasn’t exactly planned for. Things that would not be barriers to people that it was planned for, become barriers to you because you weren’t among those planned for.

The most common examples of barriers are physical, both because they’re concrete and easy to describe, but also because there’s an often-unspoken hierarchy in the disability community that has fought for the removal of these barriers, and we’ve got more practice talking about wheelchair ramps in the offline world and blind access in the online world than we’ve got talking about making the online world accessible to assorted kinds of cognitively disabled people or making buildings accessible to people for whom the most common forms of fluorescent lighting impair their ability to think or move.

If either I or my friend want to visit each other in the public part of our building, for instance, it’s almost perfectly wheelchair-accessible. The hallways are wide and flat and there is elevator access to the entire building. There are stairs, but they are optional. Many wheelchair users in the disability rights movement would stop right there and claim that the building is “accessible”. However, the public areas of the building are also fitted with old-style fluorescent lights. This gives us both some combination of migraines, seizures, and general levels of confusion. (How much confusion? When I was a teenager I took a night class under fluorescent lights, they were the only source of lighting and there were lots of them. My mother would pick me up in a brown minivan. I came out at one point and tried repeatedly to get into a little white car. I was pulling on the handle and everything. The driver did not look close enough to my mother for even me to confuse them, and the dog in the car didn’t look like my dog either.) Tinted glasses help to an extent but they don’t fully solve the problem. So the hallways are actually not fully accessible to us.

Cal Montgomery wrote some interesting stuff about this in the essay The Way Things Are. Don’t be put off by the fact that it’s about Foucault if you’re normally (as I am) put off by postmodernism. She makes some good points and she makes them in everyday language. She, like both me and my friend, finds both stairs and fluorescent lights to be access barriers. She writes about a meeting of her local CIL (Center for Independent Living) that she was invited to. They told her it was “accessible” when they really meant wheelchair access. It was really held in a room with fluorescent lights, by people who both knew that was a barrier to her and had access to a room that was both wheelchair-accessible and lacked fluorescent lights. Then she invites us to think about the fact that we often think the way things are is the only way they ever could be. She writes:

Some of us believe that “high-functioning people” or “the invisibly disabled” or “people who only use wheelchairs” don’t face any real disadvantage and therefore don’t need either cures or rights; some of us believe that “low-functioning people” or “mentally retarded people” are disadvantaged by medical conditions alone and therefore aren’t the concern of the disability rights movement; some of us believe that alcoholics drink for moral and not medical reasons and others believe exactly the opposite; and most of us have probably never seriously questioned all of our beliefs along these lines.

The way the “cross-disability” sections of the disability rights and the independent living movements are dominated by certain categories of disabled people seems natural to many people, but it could have gone another way. The movements have come to believe that it’s important to get wheelchairs into classrooms and jobsites and housing and CILs that are built to accommodate them. They haven’t come to believe that it’s important to do the same thing for people who can’t manage under fluorescent lights. But it could have gone differently.

Imagine for a moment that the disability rights movement had not arisen during a time when there were not so many white-collar jobs in America, but rather during a time when the majority of us were expected to do physical labor.

In such a time, with an “able body” being more important than an “able mind” it’s entirely possible that people with cognitive impairments might have come to be the paradigmatic disabled people around whose needs the whole thing was organized. After all, our physical accomplishments would have a whole lot more to do with our places in society than our cognitive accomplishments. We might have come to see a fluorescent-infested environment as unjust earlier than we grasped the injustice of stair-infestedness, and my local CIL might have mentioned, under “Access Accommodations,” that the annual meeting would be held on the second floor of a building with no elevators.

An interesting thing about the disability rights movement, that many people in the autistic community have not yet realized, is that a lot of the fights for access do not depend on what condition you have. Standard fluorescent lighting is inaccessible to many autistic people. It’s also inaccessible to many people with migraines, epilepsy, people who don’t have epilepsy but who are on medications that lower the seizure threshold, multiple sclerosis, and a number of other conditions. And people with these various conditions can all work together to make sure that there is some kind of lighting, whether incandescent, some other kind of fluorescent that causes fewer problems (especially, if bright, if the lighting is indirect rather than direct), or light-emitting diodes, that is accessible to more of us.

At any rate, it makes sense to me that people haven’t heard a lot of these ideas, but there’s a really good reason for familiarizing yourself with these ideas, which is that a lot of the groundwork has already been laid for us, and a lot of us are spending a lot of energy, as Joel put it, reinventing the wheel, when we could go a lot further than that a lot faster if we knew the background of what’s already happened that makes a lot of things possible — and if we knew what was possible.