Tag Archives: Respect

“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.”

Communication page I used to handle that invasive woman I met.

Standard

It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don't patronize... (Don't patronize me.) Don't talk to me. Don't touch me. Don't want talk about. (I don't want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don't care. I don't do eye contact. I'm not kidding. I've a right to be mad. (I have a right to be mad.) it's not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You're putting me in danger.) you're hurting me. You're too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.

 

Dealing with Cats, Part 1: What is respect?

Standard

Disclaimer: I am not an animal rights activist, I have zero connection to that movement and their personal sets of widgets, and often only minimal exposure to them through some of their worst representatives (PETA, Peter Singer).

I think the argument about whether animals (including humans) have a nebulous and abstract quality called “personhood” (which seems to have to do with the values of a particular set of human cultures) is the entirely wrong way to go about giving respect to animals. Too often it is terribly ableist and depends upon whether the creature in question possesses certain traits valued by certain humans, and when you go down that road you end up creating a set of criteria that not even all humans let alone all the rest of animals meet. Then you end up creating a system that privileges people based on those traits. And Singer is only among the worst of human beings to do this, he is far from the only one. In fact most people I encounter regularly seem to do this sort of thing all the time, to one degree or another. Arguments about “sentience” are similarly doomed, offensive, and full of the obvious limitations of various human imaginations when it comes to non-humans and some humans. Except that somehow they’re given even more of an outer sense of objectiveness because “sentience” seems to mostly be used in scientific or science-fiction circles.

[Edited to add: I have been told that some of that may matter in legal situations. But this series of cat posts is about personal situations between humans and cats. So in this context, cats should be respected because they exist.]

I base my beliefs in matters like this on respect.

I believe that everything, human or not, animal or not, conventionally considered alive at all or not, is worthy of respect.

I do not believe this in some fluffy insubstantial manner; fluffy sorts of people have been attracted to me in the past because the words I use superficially resemble words they sometimes use, but as soon as they find out a bit of what I am actually about they have a habit of running away rapidly. It is serious to me, solid, and ethically demanding. I also happen to believe that everything communicates and can be communicated with. I do not mean sitting around speaking out loud to rocks and having them speak out loud back. I mean that everything conveys information to everything else, whether or not that information is transmitted through the laws of physics or through complex linguistic patterns.

This is a perception that I have had my entire life and that has often been at odds with my culture. But I can’t let go of it just because some people have done terrible (and I do mean terrible) things to me on this basis (although at times I have learned to avoid the subject altogether). It is too important to how I treat others, from humans to cats to plants to rocks. I am not (as some have misinterpreted me) attributing human traits to nonhumans, I am rather saying that I view every kind of thing from humans to nonhumans as having a quality entirely their own that is important and valuable and worthy of respect and sincere attempts to listen to what they have to say to the world around them.

(I also don’t divide the world up the same way the English language forces me to sound like, but I have learned that very few other humans can speak the language I started out with and have always carried with me underneath the various attempts to sound as if I speak English. I have also found that attempts to translate my language to English not only fall short but cause reactions in others from ridicule to condemnation as incredibly inadequate in some manner whether moral or functional. And that linguists get pissed that I use the term language at all but I don’t know a better one.)

How do I know this language or whatever you call it is shared by other people? For one thing, I see it mentioned from time to time:

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed to hear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think listening isn’t an art should see if they can do half as well.

–Michael Ende, Momo

Or the following quote (somewhat autistic-centric and specific-culture-centric, so occasionally prone to generalizations):

MM: [Speaking of some autistic people...] we do not draw a line between inanimate and animate beings, that they all have a soul to us.

Daina: As a child, everything was somewhat alive to me. Perhaps the face-processing tendency that most NTs have enables them early on to distinguish what is alive and what isn’t, and what is human and what isn’t.

Ava: Or maybe what is and isn’t alive, is just another assumption that NTs make. So for the NT child, either because of the strength of those attachments to faces and the accompanying social world, or through some coincidental developmental process, the aliveness of the sensory world fades. Whereas we ACs retain more of the direct experience of the world and less of the face-addiction-belief thing.

Sola: This reminds me of a poem that I studied in high school, “The Pond” by Bjalik. The poem describes a secret place in the forest, where there is a little pond and a tree growing from it. When the poet was a little boy, he used to go there, alone, and listen to the “language of visions,” an unmediated way for the child to communicate with the tree and the pond. The articles that I read about this poem discussed the role of spoken language, as adding the social aspect, separating the initially naive child from the true essence of the world. I was enchanted by the poem. For many months I perseverated on the meaning of communication and language, searching the library for more articles about this. However, unlike the conclusion of the poem, I did not feel that growing up and maturing inevitably meant losing this innocence and being expelled from nature. I felt that I was still that child in the forest. Now that I know that I am AS, I am not surprised that the poem had such influence on me.

[...]

MM: We are always sewing souls into the things we create.

Jane: Yes I think soul (essence of being) is created through the creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral/aware consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel I am I, alone. That fraction of truth lives inside the larger truth of relationships.

MM: Most of humanity is ignorant for not seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to help give voice to persons with Alzheimer’s disease. My washer and dryer speak to me, and I painted a face on them and gave them names and make sure I don’t overwork them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machines and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.

I was raised by my Siamese cat I could understand her language better than the human language, and so I spoke Siamese before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that this is a very arrogant stance to think we are better or more alive than these others who very much have a soul.

The last set of quotes is from a set of conversations between several autistic women in the book Women from Another Planet edited by Jean Kearns Miller. It’s not identical to my experience, but the basic idea many of them are getting at is quite similar to my own idea of my innate “language”. These are not the only autistic people I have heard say this either, just the ones readily accessible in a book. Whatever way I innately perceive the world around me in this sense has a lot in common with a specific subgroup of other people, many of whom have been defined by others as autistic but not exclusively that. And I am always glad to hear something of autistic people that isn’t the stereotype of either having an empty head or a head filled exclusively with elaborate formal logic like Spock.

So how does all this apply to cats? Well, in my book cats are as deserving of a fundamental respect as are humans, rocks, and all kinds of other things whether traditionally considered animate or inanimate. Like all forms of respect, this doesn’t mean treating all cats identically to all humans (that would be a frightfully human-centered way of doing things), or even treating all cats or all humans the same as each other. Respect has to do with really listening to who someone is and treating them accordingly, even if that differs from how you would treat someone else with respect. Identical and equal are not the same. It is as wrong to reach out and pet all over a cat who finds indiscriminate petting unpleasant, as it is to withhold petting from a cat who thrives on it (but in both cases it’s also wrong to approach the cat in a way that has everything to do with your own preferences and nothing at all to do with the cat’s!). Respect doesn’t mean you don’t have to work to understand the cat either, but that is a topic for a later post in this series.

This post is the first in a series of posts I am planning to write about how to deal with and interact with cats. It’s an attempt to give a broad overview of where I am coming from before I jump into all the details. And my reason for writing this is my reason for writing most things: I rarely see anything written about the subject matter from this perspective, I know I can’t be unique in valuing this perspective (because no one is that unique no matter what they believe), and so I write the kind of thing I would like to see written. And because a friend and I have been discussing nothing but cats for ages, so my brain is pointed in this direction.

feysnuggleface10

[Photo is Fey, viewed from over the top of both of our heads. Her face is pointing the opposite direction of mine, and mine is barely visible in the photo. Her cheek is partly on my cheek and partly on the grey neck pillow. She is a grey cat with ticked fur, and a white area on her nose like a diamond on top of a triangle of white. There is also some white visible on the tiny part of her chest that you can see. She has green eyes, each one partially shut but with one more so than the other. Her ears are in their normal relaxed position. Her whiskers are neither pulled in nor pushed out, and can only be seen on one side where they spray upwards (her face is pointing to the left side of the photo). And to me, the way her face looks in this photo is both intense and familiar, although I don't know how they would look to anyone else.]