Daily Archives: May 12, 2006

More careful, not less.

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Dave Hingsburger has a training video about the ethics of touch in the human services field. He describes, in great detail, what kinds of touch are and are not acceptable, and under what circumstances, between staff and developmental disabilities.

One of the audience asked him something like, “Well what about people who are more severely disabled?”

Hingsburger’s answer was (paraphrased), “The more severely disabled a person is, you have to be more careful and more strict about boundaries, not less.”

This makes sense to me. Which is why it does not make sense to me when people talk about human rights as if they only apply to “mildly” or “moderately” disabled people (in whatever fashion “mild” or “moderate” is being defined at that particular moment in time, being aware these terms don’t necessarily reflect reality). They say things like, “This would be utterly horrible if it were done to nearly anyone else, but you’re discounting the more severely disabled people.”

To me, “more severely disabled” (however that gets defined) means less able to fight back, less able to talk back, less able to do anything about what is happening. (Where “less able” can mean “less enabled”.) And to me, that means being more careful about violating the rights of people regarded as severely disabled. Not less careful. Not disregarding rights entirely as if these are “special cases” who need to be treated with less respect than everyone else.

I am afraid of losing certain abilities. But it is not the loss of abilities that scares me. It is not the inability to move on my own. It is not the inability to understand or operate a keyboard. It is not the lack of certain kinds of communication skills. It is not loss of memory. It is not perceiving a jumble of patterns of colors and sounds and smells and movements and so forth without perceiving what other people perceive about it. These are things that happen to me from time to time, that may in the future happen more often. It is not the fact of these things that frightens me, though.

What frightens me is what people are likely to do to me. I have had people slap me, punch me in the face, kick my body, kick me in the head, shake me, grab me and carry me, twist me into different postures, stick their body parts into my private parts, grab my body parts and stick them onto other people’s private parts, wiggle their private parts in my face, leave me outside in the cold, confine me to an institution or an isolation room, regard me as ‘non-communicative’, have contests of jumping up and down on my hands, avoid making life even remotely interesting for me, and make all kinds of derisive statements and jokes about me. All because they could get away with it when I was unable to do anything about it, or because I was assumed not to matter.

Often people seem to assume that all or some of those things don’t matter when dealing with a “severely disabled” person. They may even believe that some of those things are necessary when dealing with a “severely disabled” person. Any of my fears about being “severely disabled” (well, I’m already classified that way, so I guess I mean “more so, in the conventional sense”) stem from those things that people can get away with, not from anything intrinsic to being that way itself. It’s possible to be quite happy while your body functions that way, but it is more difficult to be happy when being systematically mistreated, abused, and hated.

I am scared to tell about the time I almost drowned at the state institution. I am so angry. Don’t let me near a knife. I was in the bathtub when I heard them talking about me and saying, “Wouldn’t it be cool if Bedward drowned in the tub?” I heard them laugh and tell each other, “I dare you to go push his head under.” But then the supervisor came in and they stopped the plan. Yes, it was the worst day of my life.

Roy Bedward

I have been in similar situations to the one Roy Bedward describes, and been unable to do anything about it.

People talk about institutions, aversives, and other awful things, even death, being better, or at least more understandable, for… that kind of person. Certain human rights being optional for… that kind of person.

I have to say I am with Hingsburger on this. In the area of human rights, and in being treated fairly, we need to be more careful, not less careful, with people who are less capable of doing anything about violations and abuse. Then, maybe, at times when I lose those abilities, I won’t be so terrified, and people in general won’t be treated like moldy vomit.  It makes no sense to argue for more violation of people’s rights the more “severely” they are said to be impaired.

Turing Tests

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The Turing Test is a test of a machine’s ability to mimic human words and conversation, and is supposedly a test of whether the machine is truly intelligent. A person converses with something, usually in text, where they can’t tell if the something is a machine or a human. If the machine can’t reliably be distinguished from the human, then the machine passes the Turing test.

I have had people try to give me Turing tests, as if I were a machine. People have tried to employ trick questions to see if I am really the person writing what I write. People have done this to me in person, where the vast majority of the time the fact that I am, mechanically, the one doing the writing, is indisputable.

When this happens, I find it insulting. I find it annoying. But I am in a situation where, at present, nobody is going to take my keyboard away if I don’t pass the Turing test. Nobody is going to deny me an ability to communicate in words. Nobody is going to force me to revert to life without a viable communication system. And if they did try, I have people on my side who would fight them to the bitter end.

Nonetheless, there have been situations that have filled me with terror. Situations in which I have been unable to communicate in words, and other people have been unable to help me communicate in words, and in which horrible, potentially life-threatening decisions were being made about me. (Remember, I have anaphylactic reactions to several neuroleptics, and neuroleptics are the drug of choice in “calming” auties.) Situations in which I was being mistreated and had no way to tell anyone for years to come. Situations in which my communication devices were denied to me.

I also know what it is like to be evaluated by outsiders. Evaluation is a nerve-wracking process, when you know that your life may depend on the outcome. It is being dissected, with little pins put in you, and people making wrong statements about your insides while listening to their instruments more than they listen to you. If you want to horrify me, schedule me for an evaluation. It’s dehumanizing and the stakes are very high.

What I stand to lose if an evaluation goes wrong, is services. The services do keep me alive. But at the moment, I don’t stand to lose a communication system if an evaluation goes wrong.

There are a number of ways in which it seems, from an unemotional standpoint, to make sense to test someone to find out if they are really communicating. Obviously, the reasoning goes, if they were really communicating, they’d cooperate fully with the test and that would be the end of it.

Have you ever had a test on which something incredibly valuable — your life, your ability to communicate — depended? Would you perform as well on such a test as you would normally? Would you flub answers? What if you lacked confidence in whatever you were being tested in? Would you seek answers in any way you could, doubt your own answers?

Human beings are not unemotional creatures. When the stakes are so high, we become terrified. When people insist on believing we are someone we are not, in ways that have bearing on those high stakes, we feel insulted. Our reactions, when terrified, offended, or insulted, are not necessarily going to be the reactions of someone who is detached from the situation.

Anne McDonald, a woman with cerebral palsy who used facilitated communication starting decades ago, was asked by a court to participate in message-passing tests. McDonald had grown up in an institution. She had learned institutional survival skills there. And she was insulted by the testing. Everything in her told her not to cooperate with the tests. She finally did cooperate, and was proven to be the one really typing, but she held out to the last second.

Many people who use alternative communication, or facilitated communication, have institutional survival skills. Many have little experience of being treated as communication partners rather than as moving objects. Many have little experience of being believed in as who they are. Many find the entire act of communicating in words quite difficult. Many have motor or perceptual skills that are significantly affected by fear. Many have little confidence in often-newfound ways of communicating in words. And many have been in situations where others have always been “right” and they have always been “wrong”.

Now imagine you’ve spent ten, twenty, thirty, or even more years of your life unable to communicate in words. And you’ve started to, and this has become really important to you. And someone gives you a test. Where tests have historically meant not only things you’ve “failed”, but things (such as IQ tests) that have made a big impact on your life. And if you fail this one, it means you will possibly never get a chance to type again.

I’d just like to know how many people, in that situation, would find it easy to pass such a test, and how many people, in that situation, would not find it tempting to look for answers from the person assisting you with taking it.

I know that it is very easy to say that all of this is easy, that I’m just grasping at straws here, that this couldn’t be what’s going on, and so forth. But I’ve been in situations where testing means a big chunk of my life could be taken away, and I’ve also been in situations where people tried to informally test whether I could really type or not. And that is how I respond to these situations, even though in all other situations I’m a fairly self-confident person with communication skills that are easily verifiable: I try to look as cooperative as I can. I balk at what would normally be very easy questions. I look around for other people’s answers, and trust them over my own. And then I go home reduced to a nervous wreck for days, feeling like I’ve just been violated, insulted, and misjudged at the same time, but aware that now a lot rests on how other people see me in a 30-minute high-stakes period, rather than how I see myself every day.

I hate that a professional view of me is thought more reliable than my view or the view of people close to me. I often repeat the “safer” view of another person who is considered more credible than I am, and sometimes I doubt my own credibility even though it has been shown to be very high. I end up thinking, in those situations, that everyone else but me must be right about me. And as I said, the rest of the time my self-confidence is pretty good. A friend has described this as, “Okay, you’re spending all this time with someone you know to be intelligent, dynamic, and interesting, and then you put her in a room with a few staff and she turns into this passive lump.”

But I rarely use physical support to type, and when I do, I can always later confirm or deny what I’ve said with obviously-independent typing.

Some people claim that after appearances before massive audiences and stuff this shouldn’t be hard — I’ll tell you, presenting or speaking in front of a large audience is hard, being dissected in high-stakes situations is several orders of magnitude harder. Using physical support during a relatively high-stakes hearing recently was also much more difficult than giving a presentation, but the people involved had already seen me type without support so my worries about their view of my ability to type turned out to be unfounded, if ever-present. I’d rather humiliate myself in front of a hostile audience than be subject to certain kinds of scrutiny in high-stakes situations.

There are of course a lot of people who manage to do the message-passing thing, and pass these sorts of tests. Sharisa Kochmeister and Anne McDonald both had to pass them for court cases, but both struggled a great deal to do so. Sandra Radisch describes telling people very specific information unknown to her facilitators. Eugene Marcus had to practice over and over again to do it, and the result of his practice made it into a book. Many people have learned to type independently to refute claims that they are not typing.

But when people don’t pass what amount to Turing tests, it should not be automatically assumed that the reason is because they are not capable of writing. This can have potentially devastating consequences, and it is partly those consequences that make it so terrifying in the first place.