More careful, not less.

Standard

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

10 responses »

  1. This reminds me of a conversation I had with one of my previous employers, a woman who did the hiring for a small co-op of handicapped people who needed attendant care. Nancy was very frustrated with one of the other co-op members who had just refused to accept services from a recent hire because she thought he was sexist. He had to be let go, and Nancy had to go back through the whole process of interviewing and finding someone else. Nancy was fuming. “Nobody’s perfect. Why can’t Barbara just deal? I do. Finding staff isn’t easy, it’s not like ordering the model you want out of a catalogue. Already if they are strong enough to carry you, organised enough to show up, and speak your language well enough to communicate you’re getting a lot. Now you want someone who meets your social standards too? Give me a break!” So I found myself in the position of explaining Barbara’s position as well as I could imagine it. “Nancy, you don’t require intimate services daily. You can deal with an attendant who’s a bit of a jerk because you only need help dressing, cooking and cleaning. But Barbara really does deal with a lot from her attendants already. For instance, she will ask her attendant to insert a tampon for her. I have a lot of admiration for a woman who is that assertive about her body. But this means she needs to be able to have complete trust in her attendants.” I didn’t hear any more mutterings from Nancy.

    So yeah, more, not less.

  2. Pingback: Autism Vox » Physical Abuse: a tough topic I have to worry about

  3. See, and I thought I was against the death penalty. Alright, I’m still against the death penalty in most cases, but this is pushing the envelope for me.

    I have to say that among the general population it is these stories that tug at the heartstrings, cause uprisings, and lead to change. If you can keep people focused. In Katrina, it was the elderly left to die in the hallways of their institutions that Dick and Jane were discussing the next day, and the babies at the Superdome. Not the thousands of just “poor” people that were left to their own devices.

    If you can raise awareness on these issues, perhaps you can lead to change. It’s happened before. Remember, it was the fire that trapped children and resulted in their death that changed worker safety forever. It was the bombing of children that turned the tide in the fight for Civil Rights.

    I won’t argue that NOBODY sits around thinking about these things unless they are brought up in the media. So, bring them up in the media. Lord knows the local news loves nothing more than a good abuse story to scare all the couch potatoes.

    On another note, how do we get more people into these professions? We have a hard time filling nursing slots of any kind and most Americans do a shoddy job taking care of themselves, much less anyone else.

  4. Miss B., all those things those people did to you were *crimes*, violent crimes. (Yeah, I reckon you already know that.)

    Really, in most States just touching someone gently without his permission is a criminal offense. (“simple battery” in Georgia, I think.)

    Gentlemen used to fight duels to the death over the slightest blow.

    I think that handling someone else’s body without express permission or good necessary reason is pretty Goddamned rude at the least, and most prolly a serious crime in most jurisdictions. (IANAL)

    Crimes done in secret are often not punished. I think that’s why criminals prefer to operate in secrecy

  5. Pingback: Autism Vox » Violence: GED, SIBIS, and other weapons

  6. Pingback: Understanding of rights vs. having rights. - Ballastexistenz

  7. This post makes a lot of sense to me, and it’s something I hadn’t thought about. Thanks for posting it. I’ll try to store it away for when I start working with people again.

  8. I remember talking about this kind of thing in a group at my college program on thursday…………but unfortunately can remember very little about it……..

    Y’ know, Amanda, this will probably sound INCREDIBLY cheesy………and perhaps, if it were coming from another, a little patronising…….(consider the source though……..words aren’t working to my advantage)

    having stuff like this articulated for us………really does make a difference in our life………I think I’ll be able to fix us food now. I’m totally serious………just wanted you to know that………probably not postworthy…….(please don’t, this is bad writing….)

    Ivan and Athena

  9. Aha. so THAT’S where the bad-writing comment was……I KNEW one of us had left a slightly self-critical comment somewhere……..found it!

    The “Last 5 Comments” should be 10….or is that just the default setting in WordPress? We’ve been thinking about having a blog in WP for a little while now……….wow it’s midnight already. Didn’t realize time was going so fast……

    TI

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