Tag Archives: pathologizing

“I don’t know that person’s program.”

Standard

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.”

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

Standard

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.

Identical behavior, contrasting responses

Standard

This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.