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.
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.