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.

 

To the woman who accosted me on my way to the para transit van tonight.

Standard

I agreed to meet you tomorrow.

That was before you made it clear that I really do not want to meet you tomorrow.

It is not ever okay to demand that I look at your face, especially not by getting in my face. For the record, I didn’t see your face even when you did that. I saw a weird swirl of blue and brown. Since your skin is pale and you have blonde hair, I’m pretty certain none of that was your face. That’s what happens when you seriously overload a person with bad visual perception. I was using those eyes before you wrecked them like that.

It is never okay to demand that I hook pinkies with you and “pinky swear” that I remember your face and will meet you tomorrow. Especially after I have done everything in my power to pull away from you when you held out your pinky in ever more intrusive ways.

It is not okay to then, after I have had a clearly negative reaction any time you got near me, come after me and demand a high five.

Most of this conversation happening in the tone you use to talk to a little kid.

It is doubly not okay to respond to my terror and attempts to back away from you and cover my head and face, by saying “YOU SHITHEAD!”

To be perfectly clear:

I do not want to meet you tomorrow. Or ever.

I do not want to talk to you.

I do not want to touch you.

In fact, of the three, I want that one the least. So don’t, ever, make another attempt to touch me. Don’t lean towards me or get in my face either. That makes me feel like you’re inside me somehow.

Because of you, I may not make it back tomorrow. Not for fear of you. Although that’s a consideration. But rather because your actions turned a good but tiring day into overload and excruciating pain.

My mind is running in circles. I could not answer some very simple questions when I go home.

I was barely able to get to bed from my wheelchair because of your actions.

Because doing that all to me had actual consequences towards my ability to think, understand, and move.

I might not get to sleep in time to go back tomorrow. It takes my brain time to recover from that kind of assault and sometimes it takes that out of the time I need to be sleeping. Or I may be too overloaded by tomorrow. Or too tired. And you would be the main reason for that.

I’m not a child. I don’t pinky swear. I don’t do patronizing sing-song voices. I don’t like to be touched by strangers and I don’t like strangers trying to force me to look at their faces, touch them, or promise them anything. And I don’t like being called a shithead for not responding to these things or looking terrified by these things. That goes double if you said shithead in the same light-hearted, patronizing way you would to a cat who just put their teeth on you for petting them too long. So don’t think that “I was just joking” would change my mind.

Oh and if you wonder why I didn’t just type this when I was with you? Because your presence rendered me unable to type from the get-go. That’s always a very bad sign for any future interactions. It doesn’t just happen around random people, it happens around people who are peculiarly invasive.

If I see you tomorrow and you have read this: DO NOT talk to me, touch me, joke with me about what happened tonight, hang around near me acting huffy, or any other direct or indirect interaction with me. I can’t take it. I couldn’t take what you did already. Enough is enough. FFS.

Also? If you hadn’t put me through all that, I wouldn’t be refusing to talk to you anymore. I would meet you tomorrow, or not, and either way things wood be fine. So don’t blame me. I’m just trying to watch out for my health. (Yes, literally. Which is why I’m not budging on this.)

The Mother Tree At Ground Level.

Standard

I finally found a photo of the Mother Tree at ground level. For those that don’t know, this is a tree in the redwood forest I lived in when I was really little. I figure something like this is in order after the awfulness in the last post.

20120430-144452.jpg

[Photo: A little out of focus, with a light leak in the upper left corner. A large redwood tree, including the ground area. Some piece of an iteration is visible hanging down on the left.]

I hadn’t uploaded this one because I thought the light leak made it look bad. This was before those were trendy. But now I like this one a good deal. It shows the bark texture better than any of them.

My brother drove me up there and I curled up right in the roots where the tree met the ground and just sat there listening. It felt almost like the tree was singing. Not out loud, just an intense, deep treeish clarity that struck me as song-like. And I stayed there and listened a long time. Momo-style.

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

You can see more about this tree, and about what iteration means, in Redwoods on Top of Redwoods. And a picture of my brother holding me there at One More Picture from the Redwoods.

BADD: Pulling Back Curtains

Standard

Blogging Against Disablism Day, May 1st 2012

This is my other post for Blogging Against Disablism Day (BADD) on May 1, both about caregiver abuse, this one about the most extreme kind. It’s in a heavy topic, but a necessary one given the public’s response to several recent murders of disabled people. The situations I’m describing are somewhat different from the recent murders that have come to light. But what we can learn from them is important to all such situations.

1. Introduction: Pulling Back the Curtains on Hate and Love

This is my first attempt to write about something extremely serious while avoiding a dark, focused state I recently realized was unhealthy. There are good and bad kinds of dark, just like there are good and bad kinds of light. This was the bad kind of dark, not the kind that protects but the kind that consumes and drowns you. It felt as if the entire world was engulfed in this place that was intensely dark, and focused into a kind of false but convincing clarity. Hiding inside that false clarity was a belief that this horrible state of mind was all there really was to the world when you stopped pretending that there was nothing bad going on.

Along with this state went a sense that I was doing the world a favor by constantly immersing myself in it. But while the information I was giving out was important, it was tainted everywhere by this state of mind. I felt like I was telling the world the truth, but it was only one part of the truth. Because the real truth allows for the possibility of fighting this stuff and winning. But the truth I was telling had all kinds of warping around the edges.

I felt like I was lifting away a curtain of ignorance among most people as to exactly how awful the (human, social) world can really be to anyone who isn’t valued. And in a way, I was. But I was not lifting away a second curtain. Behind that second curtain was everything good in the world, that remains hidden from most people as well. Behind that curtain is every possibility for love, compassion, cooperation, and hope. Not the fuzzy greeting card version, but something so powerful, fierce, and solid that it can evaporate all the awful stuff that lies behind the first curtain if enough people act on it.

It was painful events in my own life that led to my conviction that I had to tear aside the first curtain and make everyone stare into the awful facts I was aware of. But in doing it the way I did it, I was allowing the people who hurt me free use of my brain to hurt other people. Not that they were literally sitting there controlling my brain. But their actions caused a ripple effect. I was part of it and by my actions unwittingly allowed their influence to spread wider. This often happens to survivors of abuse and oppression. And it allows terrible things to spread around far beyond the original targets.

If at any point during this post, you end up feeling anything resembling that dark focused state, then try to resist it. Because this topic is scary, but feeling like you’re trapped in a world so horrible and terrifying that the good things about it are a long way off if they exist at all? That plays right into the hands of the kind of people I am going to write about.

2. Caregivers from Hell

The reason I have decided to write about this, despite that risk, is that very few people we aware of it. Some people work out parts of it but few people work out all of it. And in light of the way people have been excusing several recent murders of disabled people, it’s as relevant now as it was when it was written. It shows the flaws in the idea that our deaths are excusable or at least make sense. And it provides information that should make disabled people and anyone who cares about us careful in selecting, interacting with, and checking up on caregivers.

Please be clear: Not all, not even most, caregivers are like this. But just as disabled people have to be careful that caregivers don’t rob our money or possessions, we have to create other safeguards as well, to address the huge power imbalance that allows the events described in this post to happen without many people noticing or caring.

I found it in an obscure, out of print book called Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance? by Dick Sobsey. It’s one of those books that cites sources several times a page, and it’s out of date but as far as I know it’s the only book of its kind. I bolded parts of it for emphasis:

These five considerations for training and service delivery provide important directions for law enforcement. They also suggest two interrelated areas of concern. First, these five stated considerations arise from the perspective of family violence; however, many people with disabilities are victims of institutional violence, which has its own unique considerations. Therefore, police need training relevant to institutional, as well as to family, violence. Second, successful police work will require an understanding of the nature and dynamics of human services systems and the social realities encountered by people with disabilities, as much as an understanding of disabilities themselves. Law enforcement must be prepared to address the special needs of people immersed in the service system and the unique features of conducting an investigation in service environments.

For example, an investigation of 29 highly suspicious infant deaths in Toronto’s Hospital for Sick Children led to the quick arrest of a registered nurse for the murder of the most recent apparent victim (Bissland, 1984). The nurse was charged because she had been assigned one-to-one supervision of an infant whom the police felt certain had been murdered, and they believed that she was the only one who had the opportunity to commit the crime. However, more thorough investigation revealed that the nurse who had been charged was not working on the dates of some of the most highly suspicious deaths and had been relieved on lunch and breaks by other staff on nights that children in her care had died. The murder charges were dropped, and a civil suit for wrongful arrest soon followed. In the end, the probable murder of at least 8, and probably as many as 29, children by Digoxin poisoning went unpunished.

According to Bissland (1984), some of the complexities that thwarted police were a lack of knowledge of hospital procedures, apparent reassure to make a quick arrest so that the hospital could return to its normal routine, and an apparent lack of cooperation on the part of some hospital staff. For example, police were told that critical records of nursing assignments at the time of the deaths had been destroyed, but the missing records resurfaced long after the investigation had gone astray. This pattern of less than enthusiastic cooperation from within institutions is not unique.

Police in Grand Rapids, Michigan, were more successful in securing the conviction of two nurses in the suffocation of six nursing home patients; however, a similar pattern of institutional resistance plagued their investigation (Cauffiel, 1992). Available evidence indicates that similar serial murders in hospitals and nursing homes are likely to be as common, if not more common, than serial sex slayings or thrill killings (e.g., Hickey, 1991) that are typically given widespread public and professional attention. Despite this fact, little research has been conducted on the part of law enforcement to develop profiles of these medical murderers or specific investigative procedures for the institutional settings where these offenses occur.

Better success in policing institutional offenses can only occur when the principles of community-based law enforcement are adequately applied to the ethnographically distinct communities and cultures of hospitals, residential schools, group homes, and other service delivery systems. Police must understand the internal dynamics of service institutions to perform their job effectively within these environments. Before this can be accomplished, police, and society in general, must identify this as a law enforcement priority.

Often this commitment appears to be lacking, and abuse and violence in institutions remain hidden or are rationalized. For example, in the case of the Grand Rapids nursing home murders described above. Cauffiel (1992) quotes Ken Wood, the estranged husband of one of the convicted killers, saying:

How much life did she really take? All of the victims weren’t even living. They enjoyed nothing, experienced nothing and were going to die. The families at the time of death were relieved at the end of suffering . . . I know they had no right to play God . . . but when you decide how much of her life should be taken or lost to prison, shouldn’t it be equal to what was taken from their victims? (p. 485)

Although these were the words of a husband pleading for leniency for his wife, Cauffiel (1992) suggests this was “a view not uncommon in Grand Rapids, in Michigan, or in America, among those who became familiar with the coverage of the Alpine Manor murder case” (p. 485). This view contrasts sharply with the reality that most of the patients killed were not particularly debilitated and perpetrator Cathy Wood’s own statement that “we did it because it was fun” (quoted in Cauffiel, 1992, p. 254). Such rationalizations that trivialize serious crimes against people with disabilities can only be seen as denying their right to equal justice. Progress toward reducing risk of violence and abuse for people with disabilities quirks that equal protection of the law is applied to all members of society.

Elsewhere in the book it describes people who deliberately go into caregiving fields for the purpose of finding easy victims. So not only that. But this kind of serial killer is at least as common, probably more common, than the kind you hear about on the media, that popular culture is obsessed with. Some of them are suspected of killing hundreds of people. And yet the media doesn’t give a shit and neither does law enforcement. So you never hear of it.

And people are willing to excuse it on the grounds of caregiver stress, our purported lack of a life worth living, the idea of mercy killing, and all kinds of other bullshit. Even when the description of our impairments doesn’t match our actual ones, which happens pretty much any time anyone kills us for any reason. And even when the killers specifically state they did it for fun. Which happens far more often than you’d think. I remember one account of a woman who killed patients in a hospital or nursing home so that their names spelled out words. Of course even when caregivers are burned out, even when they believe they’re acting in our best interests, even when our purported abilities seem to match our real ones — that still excuses nothing. But it’s amazing how much the public want desperately for those things to be true even when they clearly aren’t.

You do hear of some people like this though, just hidden in various ways under other guises. Many famous figures in the right to die movement were either murderers/serial killers or wannabe murderers/serial killers, people who clearly got off on death, rather than people who had any ethical interest in the subject. And you can bet there’s more hiding in plain sight that we don’t know about. I know someone who is almost certain his significant other, active in that movement and obsessed with serial killers, has killed people in their job as a nurse. But lacking evidence he can’t do anything about it.

Mind you, even if I don’t agree with them, I know there’s plenty of people in that movement because of a sincere commitment to their personal ethics. But it takes naïveté or wishful thinking not to notice that some of the leaders are really creepy and appear to be motivated by something other than wanting to help terminally ill people die with a minimum of pain and suffering.

One reason I oppose the right to die is not because there aren’t situations that, in a fair world, I would be fine with it. But rather because, in this world, it would make things too easy for would-be murderers and serial killers. And despite claiming to be all about autonomy, many right to die organizations jump in the moment they hear about it, to support parents who murder their disabled, non-terminally-ill children without the children’s permission. That tells me way too much about the motives of some of the leaders. Things are already too easy so I can’t support anything that makes it even a little easier. But I’m getting a little off track here.

And not only all that. But even though this is known to be a big problem, the media doesn’t care much and neither does law enforcement. Which is about typical when any of the “wrong kind” of people get killed on a regular basis, whether it’s disability or something else.

But what this means is that disabled people have plenty of reasons to be wary of our caregivers. I thought of posting this because I said I refused to be alone with a caregiver after they know they’ve been fired, and someone told me they’d never thought of the power imbalance there. This sort of thing is exactly why. You never can exactly predict who will become abusive, whether it’s emotional abuse, physical abuse, or even killing. I found that out the hard way in mental institutions, where I am absolutely certain that some of the people who worked there had actually succeeded in killing other people even if they didn’t succeed with me.

But as I said before. Being completely terrified about this only plays into the hands of the people who do it. Be aware. And be careful. And take precautions. But don’t let this sort of people have control over your emotions, because that doesn’t help anybody.

Please tell people these facts though. Because few people seem to even realize that not everyone in healthcare or caregiving professions is there for good reasons. Let alone how many serial killers there have been. One group of caregivers is even suspected of 49-300 murders according to this book. That puts them up there among the worst of other kinds of serial killers.

It must seem perfect to such a person, to get to kill people without as much chance of getting caught, and even if you do get caught people may still make you out to be a hero. People die all the time in nursing homes, even people whose conditions shouldn’t be terminal. That’s taken as normal by people who equate disability with being halfway towards death anyway. In most kinds of institutions colleagues will cover for you — that’s how you get so many deaths from “heart problems” and “seizures” in people who didn’t have heart disease or epilepsy. And lots of people think disability is worse than death so killing us is doing us a favor. Or if not that, they’ll at least excuse it on the grounds of caregiver stress and burnout. And the cops don’t investigate much anyway, since we aren’t valuable to them. It all adds up to a situation where any serial killer who truly didn’t want to get caught, would jump at a chance to take that kind of job.

So let people know about this. Let people know it happens at at least the rate of other kinds of serial killing if not more. (I suspect far more, because of the ease of hiding it.) And take precautions with even caregivers you trust. But don’t get trapped in fear or despair, that’s what such people want of us. It helps them, not us. Always remember there’s that second curtain that needs pulling back, especially when dealing with truly horrific situations like this. Behind it you will find all the love and compassion required to take a stand even when nobody seems to listen.

3. Commenting guidelines

As with many such posts, I’m explicitly making clear that I won’t accept comments that in any way excuse, justify, or condone murder. Including comments that deliberately skate close to the edge. And including comments that seem to be all about compassion… except it’s always for the murderer. Those are suspect because the only murders where there’s such an outpouring of compassion for the murderer, are ones where the murder victims were a type of person who don’t matter enough for the appropriate outrage to take place. You have the entire rest of the Internet to say things like that, so don’t grumble about free speech either. I want this one little tiny corner of the Internet to be a place where disabled people don’t have to put up with that bullshit. Don’t even try to ruin that.

In this context, posts supporting the right to die movement aren’t welcome either, even by people who sincerely want to prevent suffering. The reason is that in a discussion of murder and serial killing of disabled people, discussion of situations where killing disabled people might be okay, has the effect of adding support to people who kill us without our consent for reasons that are far from benign. This happens even when the individual person arguing for it doesn’t have that motivation. So I’d like you to respect that this is not the time or the place for that kind of discussion.

Finally, please respect that people are grieving for recently murdered people from several different minorities, including disabled people, right now. The fact that the people who killed them were unlikely to be serial killers doesn’t make their deaths any less awful, and people’s widespread defense of their killers any less despicable. I hope I have created one small place on the Internet where everyone matters, even when we belong to groups of people that those with power hate, fear, and consider insignificant.

There are no unpersons here. For everyone who has ever been killed for who they are, regardless of the reason: Rest In Peace. I will not allow anyone here to speak against you.

BADD: Caregiver abuse takes many forms

Standard

Blogging Against Disablism Day, May 1st 2012

This is one of two posts I’m making for Blogging Against Disablism Day. Both are about caregiver abuse. This one is about misusing power in caregiving relationships. In particular, abuse that most people wouldn’t think of as abuse.

A note on vocabulary. Caregivers are called different things in different contexts. Caregivers, aides, personal assistants, attendants, staff, etc. Sometimes they also have more specific titles like LNA for Licensed Nursing Assistant. Regardless of how any of these terms are used outside of the disability world, every single one of them, in the context of disability, refers to someone with incredible amounts of power over disabled people. Not a person the disabled person has incredible power over. And that goes for even if we hire and fire them ourselves.

I get services from two agencies, a developmental disability agency and a physical disability agency. The DD agency calls caregivers staff. People from the physical disability agency can have all kinds of job titles depending on what their specific job is. The ones I see regularly are called LNAs. None of these terms are considered disrespectful by the agencies using them, or by the caregivers themselves. And when I refer to staff or LNAs, I am talking about people with huge power over me, not people subject to my own power. That will become obvious when I use events in my life to illustrate different abuses of that power.

I recently found this graphic developed by the Wisconsin Coalition Against Domestic Violence and distributed by the National Center on Domestic and Sexual Violence. It’s called a Power and Control Wheel.

At the top, it’s labeled “POWER AND CONTROL WHEEL: PEOPLE WITH DISABILITIES AND THEIR CAREGIVERS”. Around the outer edge, colored black, are listed physical and sexual violence. The middle says “POWER & CONTROL”. In between, in grey, are various forms of abuses of power and control.

Since this is a graphic, and since the PDF file is kind of muddled in terms of the placement of lines that a screen reader might use, I’m going to transcribe what’s on the graphic and then provide examples from my life and the lives of people I know. But first, the graphic and the PDF:

20120430-125810.jpg

A PDF of this file is available from the National Center on Domestic and Sexual Violence here. So on to descriptions of each section of the wheel.

COERCION AND THREATS:

Threatening to hurt the person; withhold basic support and rights; terminate relationship and leave the person unattended; report noncompliance with the program; use more intrusive equipment. Using consequences and punishments to gain compliant behavior. Pressuring
the person to engage in fraud or other crimes.

Threatening to cut off support is a huge one I see all the time. I’ve had people literally walk out the door in the middle of a shift without assisting me with vital things, just because they were angry with me. Or just because of things I can’t even figure out. Like more than once a person has come up behind me and startled me, and I jumped and shrieked involuntarily, and they said “That’s it, I’m out of here” and turned around and walked out the door. That’s basically denying a person disability services on the basis of the person being disabled, but it happens all the time.

Using consequences and punishment to gain compliant behavior is something that pretty much all institutions do, including the kinds of institutions that most people don’t call institutions. My special ed school was huge on that. And the consequences were things like being locked in a dark closet for hours.

I found it amazing that they listed the part about pressuring people to commit fraud. Years ago, I had a staff person who was very manipulative in general. He would do things wrong on purpose and then blame them on other staff, in an attempt to get me to trust him alone and to distrust other staff. I’d experienced that before, so I knew what I was looking at. He also claimed to have been fired from this job in the past because he was “just too political” about disability rights.

But the very last straw was one morning when he came in and explained that he had “connections” at the local hospital. He knew that I was having trouble obtaining a certain medication that Medicaid refused to cover. He claimed that if I was “already in the system”, Medicaid would have covered the medication because they only refused to cover it for people who weren’t taking it already. He told me that he could use his “connections” in the hospital to change my records in the computers so that it looked as if I’d already been taking it, and that then Medicaid would cover it.

The moment he was gone, I contacted my case manager and told him that I was afraid of this guy, and that he’d tried to get me to commit Medicaid fraud. The very last time I saw the guy, he must have seen the writing on the wall. Because he told me he was on the verge of being fired again for “being too political” so he was going to quit before they could fire him.

But one mistake they made was ever allowing him back into my apartment after I’d reported what happened. Caregivers can turn outright violent if they think you’ve reported them for abuse or incompetence. Not all of them do, but given their extreme power over disabled people, it’s dangerous to allow them to be alone with a client once they know they’ve been reported for abuse or that their job may be ending. I’ll get to an example of that later.

The times when people threaten to use more intrusive equipment have usually been when I’m dealing with the medical profession. I once refused to take a pill I was allergic to, and without even stopping to figure out why, a doctor threatened to stick a suppository up my ass. She wouldn’t let up on that and other threats until my power of attorney contacted Patient Relations on my behalf. In the psychiatric system, refusing medication often means being tied down and injected with it. There’s something very punitive about the way these systems handle someone not immediately going along with whatever they want.

I’ve also had people, both medical and otherwise, do things to me in ways that hurt. On purpose. That didn’t have to hurt. I once had a doctor order a blood gas not because I needed one but because he’d decided I was a bad patient. He pretty much said outright that this was why. My problem? Saying that his treatment for asthma wasn’t helping my breathing problem that wasn’t asthma. Because of him, they overlooked an infection that did permanent damage to my lungs. Other times it’s just a matter of providing the same services as usual, only in a violent way. It’s hard to describe the difference. It’s like there are gentle ways and there are violent ways to help someone transfer into a wheelchair.

There’s also the threat of being considered a bad client. The kind who complains too much. The kind who bans too many people from your house. I’ve put up with all kinds of things for the sake of not being considered that kind of client.

That includes sexual abuse. That’s another kind of abuse where sometimes it’s all about the way the person does things. In this case I needed to be bathed in bed and have different lotions appled to various parts of my body. And this woman… I can’t describe the way she did it. It was like a sexual caress. It was all wrong. And yet I put up with it every day because I knew that nobody would believe me, because the abuse was too subtle, because my sexual orientation would be called into it, because I would be told I was misreading social cues, all kinds of reasons. But mostly because I couldn’t afford not to get those services.

One of the worst threats to withhold care was explicit and came from a really bad case manager. Even though prior to coming to this DD agency, I had had one staff person for several years — an eternity in human services — he started spreading rumors that I was always refusing staff before I got there, and switching them all the time.

There were two people that I began refusing to allow into my apartment. One of them had a severe cognitive impairment that prevented him from understanding three-word sentences some of the time, in ways that directly endangered me. I reported this to the agency and he thought I was saying that as an insult. I told them I wasn’t. They told me nobody with a severe cognitive impairment would be allowed to work for them. Years later they figured out he had been hiding his Alzheimer’s from the company in order to avoid getting fired. I never got an apology.

But in the meantime, they didn’t know this. And there was this other guy who was constantly proselytizing to me. Two people out of dozens of potential staff.

Well they started telling me things like “Nobody really wants to work with you, you know.” When staff told me they liked me, this case manager would tell me they didn’t really, and that everyone hated working with me. He kept sending in the two guys I’d said could not come in, and telling me that if I refused them, I would not get services at all. And that he would write me down as unilaterally refusing all services from the agency.

Later he threatened to put me in this agency’s version of institutional care if I didn’t do what he wanted. I filed a complaint about all of this and more, and I won.

Back in California, there was an agency that had a policy of firing staff that clients liked, or pressuring them into quitting. Usually through blackmail, and setting them up to look like they were abusing people. Meanwhile, if any of us reported real abuse, they’d give that person a promotion. It was twisted but very deliberate on the part of two case managers who had the most power and who treated it like a fun game to mess with our lives. I’m not kidding.

One time, even, I reported one staff person for abuse. Later on, a very good staff person, well-liked by the entire company. Was fired for abusing clients. In the same, specific, way, that I’d reported the other person as doing. There was a client who couldn’t write for himself. So he’d dictate an email and they could write whatever they wanted. And so one day they wrote an email, as if from him, accusing the good staff person of abusing him in the same bad way as the person I’d reported. He had no clue what was going on when they fired her.

But anyway. Because of my role in reporting actual abuse. They refused to give me services at all. They blackmailed one good staff person into quitting a day before she was going to be fired. She refused to tell me what they’d done to her, but she was shaking the entire shift. They did this on purpose, because the next day was the day she would train the new staff person about what I needed them to do. This left me with a new, but good, staff person, who had to learn everything from scratch. This amused the case manager.

But then the new, good, staff person, was fired in the scenario I described above. And they just refused to give me services at all for months. This person ended up doing services for me all that time without much if any pay (she got a little from a different state agency) because she couldn’t stand what they were doing to me.

The way they did it, was they’d take careful note of things I couldn’t have in staff — for instance people who couldn’t lift wheelchairs — and then they’d say “We could only find a person who couldn’t actually do anything for you, so you’ll have to accept that or nothing.” It was really weird. At one point they deliberately triggered me into a meltdown, and then smiled at a (good) staff person and said “See what you made her do?” Then blamed her. It was a mess. But it basically all amounted to withholding services because I reported abuse.

CAREGIVER PRIVILEGE:

Treating person as a child, servant. Making unilateral decisions. Defining narrow, limiting roles and responsibilities. Providing care in a way that accentuates the person’s dependence and vulnerability. Giving an opinion as if it were the person’s opinion. Denying the right to privacy. Ignoring, discouraging, or prohibiting the exercise of full capabilities. Raising a hand or using looks, actions, or gestures to create fear. Destroying property and abusing pets. Mistreating service animals. Displaying weapons.

The very first time I saw anyone from the DD agency I get services from, I knew they were going to be trouble. I was in the parking lot before they were going to interview me for services. And what I saw made me nauseated.

A disabled man got out of a car. He banged his leg a little bit. The staff person swooped over to him and said, in exactly the baby-talk voice it sounds like, “Awwwww I kiss your boo-boo all better!”

I knew at that point that if they actually gave a shit about not treating people like children, she wouldn’t be working there, because she was doing it in public in a flagrant way that meant she’d had to have done it in front of people before.

And as an agency, they really don’t give a shit. There’s individual people who give a shit, but a lot who don’t.

The agency that really has problems with privacy, is the physical disability agency who helps me bathe. Yes, they normally see me naked. Yes, they normally clean my private parts in ways I can’t clean them myself. But that does not mean they should be allowed to deny me privacy in other situations. In fact, it means they should be giving me more privacy in other situations.

The big thing is walking in on me in the bathroom. I’ve never had much of a sense of body modesty. But when I learned that puts me at risk of abuse, I’ve been trying to learn it. This is not helped when people walk in and stare at me when I’m taking a shit. There is no excuse for that except in circumstances that don’t apply here. And yet if I complain to the agency about it, they’re puzzled as to why it’s even a problem. If I want to keep them out I pretty much have to lock the door, and then they’ll stand out there loudly complaining about how much time I’m taking.

The rec program from last summer was huge about treating people like children, making unilateral decisions, and all of that kind of stuff. We had to ask permission to do much of anything at all, and… I don’t even have the mental energy to go into everything that happened there. I already described it in another post.

Even otherwise good staff frequently make decisions about stuff without consulting me. Sometimes I agree with them, sometimes I don’t, but people should at least ask.

And providing their opinions as if they were my own? That’s happened to me all the time. It’s made worse by the fact that people will talk to a staff person rather than to me. Then the staff person can answer on my behalf without even asking me what I believe.

ECONOMIC ABUSE:

Using person’s property and money for staff’s benefit. Stealing. Using property and/or money as a reward pr punishment in a behavior program. Making financial decisions based on agency or family needs. Limiting access to financial information and resources resulting in unnecessary impoverishment.

What usually happens with me is more subtle. Which is that people will spend money in ways that really screw up my finances, but nobody holds them accountable.

I have a friend who is very poor. She asked someone to send something by mail or Fed Ex or something, with whatever the normal fare was. They bought the most expensive option, like next day air or something, and brought the expense up to $100. She then didn’t have any money to spend the rest of the month. The person was never held accountable, and my friend didn’t have the cognitive or physical stamina, or money, to fight them in court or something.

I can’t count the number of times I’ve had people do similar things to me. Or they’ll spend over $100 on groceries without telling me. Which is why I now have a ledger system in place where people have to write down how much they spend. But it doesn’t stop people from spending it in the first place.

For someone without very much money, this is a huge deal. And yet there’s very little recourse, either when people spend too much, or when they destroy expensive property.

As far as using my property for their own purposes? I had this staff person years ago, who was always evangelizing to me about his religion. And was always trying to hold me to standards from his religion, when it wasn’t my religion to begin with. But then he began telling me things like “I provide these services for you, so you need to do things for me in return.” What I had to do in return, apparently, was use my printer to print off copies of a pamphlet regarding his religion.

I also at one point had been prescribed Vicodin after surgery. I didn’t use all of it. So a staff person started taking it. As in, taking it and using it. I couldn’t complain because I couldn’t afford to have her not working for me.

WITHHOLD, MISUSE, OR DELAY NEEDED SUPPORTS:

Using medication to sedate the person for agency convenience. Ignoring equipment safety requirements. Breaking or not fixing adaptive equipment. Refusing to use or destroying communication devices. Withdrawing care or equipment to immobilize the person. Using equipment to torture person.

I once lived at a residential facility that made a big deal about the fact that they didn’t use restraints or locks on the doors. What they didn’t tell people was that they used medication and behavior modification to ensure that there were restraints inside people’s heads. The same happens in a lot of systems that claim to be “more humane” than places that use locks and restraints. I’d far rather just be tied down, at least it’s honest.

I remember one staff person who had been great for years, and then something changed. Suddenly she began withdrawing support at random times, that seemed designed to hurt me and make me miserable. She made me sleep on the floor rather than on the only bed in the apartment. She would not allow me to lie down on that bed even when I’d just had a long airplane trip and desperately needed a place to lie down.

When I moved house, she refused to allow me any role in unpacking or deciding where my belongings went. And that was when I first experienced the part where she began messing with my head. She said, in a tone as if I had requested something ludicrous and impossible, “I am not going to sit here and ask you where to put every single thing!” I began to doubt myself so much that I spent years afterwards asking other staff people, “Is it wrong to ask for that when I’m unpacking from a move?” They all say no it’s not wrong, but I’m still afraid to even write this down lest someone tell me how I’m horrible to staff by expecting them to do things they shouldn’t be expected to do.

Then it started being things where I badly needed something. She had set things in front of the door so that only a walking person could get in and out, but you couldn’t get out in a wheelchair. When I asked her to move these things, way too heavy for me to move, she told me “I’m not your slave.” She convinced me that if I contacted my case manager about her not doing her job anymore, the case manager would see how ridiculous I was being to expect her to do things that she’d done for me for years without complaint.

She later told me that when someone is stopping any kind of relationship with her, she treats them like shit to punish them and to convince herself that it’s not going to be any loss to her. But that’s a really shitty excuse for what she did.

I don’t know who did it, but someone eventually reported her to Adult Protective Services. I don’t know what abuse they witnessed, but it was bad enough that a total stranger reported her. She blamed me and a friend, but we didn’t do it. She wouldn’t believe me when I told her we didn’t. I eventually did tell my case manager what was going on, and she was horrified and said I was not in the wrong.

And yet still. I’m afraid to talk about this. Because on some level I still believe that I’m an unreasonable person who asks staff to do things that they shouldn’t be required to do. Even though since then I’ve asked tons of people and they all said she was in the wrong.

Elsewhere I describe what happens when people outright ignore that I’m typing anything. But another thing happens sometimes. Where they’ll just say to me, “I don’t have time for this” whenever I try to say something. Or they’ll talk over me too loudly for them to hear me, since communication devices don’t usually go up to very loud volumes. There’s this idea that communication ought to be a privilege, not a right, and that I’m only allowed to communicate at times when it’s convenient to others. Or that I don’t get to communicate at all if they’re angry at me for some reason. This becomes even more of an issue at times that I need physical help using a communication device. People seem to think of communication in general as something that’s nice if there’s time but otherwise forget it. It’s all about whether it’s convenient to them, even though times when it’s inconvenient to them are often the times I most desperately need to say things.

MINIMIZE, JUSTIFY, AND BLAME:

Denying or making light of abuse. Denying the physical and emotional pain of people with disabilities. Justifying rules that limit autonomy, dignity, and relationships for program’s operational efficiency. Excusing abuse as behavior management or as due to caregiver stress. Blaming the disability for abuse. Saying the person is not a “good reporter” of abuse.

Caregiver stress is the one that stands out to me here. People have used it to justify literally everything up to serial killing of disabled people. (No, I’m not exaggerating. I wish I was.) And the public buys it. They buy that it is just so stressful to work with disabled people, that abuse is bound to happen. They even say this about murder, even multiple murders, even when the murderers outright admit they only did it for fun.

I’ve done a lot of research into the murders of disabled people, and autistic people in particular. You hear things all the time like “She shouldn’t be sentenced to prison. She already served 15 years of being the parent of an autistic child.” Again, I wish I was kidding.

And if people will use this to justify murders and serial killings, they will use it to justify any abusive thing that happens to a disabled person ever. And they do. All the time. This is one of many reasons that I don’t trust most campaigns for awareness of caregiver stress and burnout. I’m not denying that those things are real. But they’ve become so ingrained in public consciousness, that the instant a crime against a disabled person makes the news, all you hear is “It’s so hard to take care of That Kind Of Person, you really can’t blame them.” Coupled with a lack of focusing ever on the fact that disabled people get burned out from having to put up with caregivers all the time whether we feel like it or not, the usual ways people discuss these things start seeming one-sided and scary.

How bad is it? I know several people who have contacted rape crisis hotlines to report rape by caregivers, and been told outright “You have to understand the kind of stress they’re under, it’s very hard to care for someone like you. They really have your best interests at heart and you should learn to accept that.”

I have told people about things I went through growing up that nobody should have to go through ever. And been told that “being a caregiver is hard, you have to understand that”. As the very first response when I try to disclose horrific forms of abuse. There is no escaping this excuse. And it’s a terrible excuse but people buy it because the disabled person’s side of the caregiver relationship is not taken seriously at all. Even though we’re truly the ones on the wrong end of that power relationship.

Mind you, I know caregiver burnout happens. But any discussion of caregiver burnout has to draw lines about what it’s used to justify. I’ll buy that people will get irritable and snippy. I won’t buy that truly abusing and killing people is ever an acceptable response. Any discussion of caregiver burnout also has to acknowledge the other end, the end nobody talks about. Which is that disabled people get burned out on our caregivers. But that we have no choice but to accept care every day. We can’t take a break without danger to ourselves.

Some places have respite services for caregivers. There are no respite services for disabled people. Ultimately, even if it would make them feel terribly guilty, caregivers can walk away and abandon us without dying. Disabled people cannot abandon our caregivers without dying. That shows one huge power discrepancy in the relationship.

As for all the other things, they are pretty much standard practice in most agencies and institutions. Everything is set up for the convenience of staff and other workers, not for the convenience of disabled people. It’s rare to find a place where this is otherwise. And that means that if abuse happens, it will either be justified as part of the program, or someone will make up ways to make disabled people sound like we’re unreliable reporters.

There was a woman who was a client of the same agency I am a client of. And her caregiver literally would not allow her into certain areas of the house. She insisted that her client could not be home during certain hours. One day, she had a serious bathroom accident at work. Her caregiver refused to allow her to come home. This was reported to Adult Protective Services by her job coach.

The entire investigation basically involved the agencies finding “evidence” that this client was a habitual liar. APS decided that abuse didn’t happen and that the client was lying about it. You hear the same things when it’s sexual abuse. Dave Hingsburger said he went to a rape trial where the agency brought out all the different reasons this person could not be trusted. She tried to say “But I only lie about little things, not about something like this.” As I remember it, nobody believed her. But even when someone isn’t a liar, you can bet that once they report abuse by a staff person the agency happens to like, they will be made into one.

ISOLATION:

Controlling access to friends, family, and neighbors. Controlling access to
phone, TV, news. Limiting employment possibilities because of caregiver schedule. Discouraging contact with the case manager or advocate.

Limiting employment possibilities because of caregiver schedule is the norm for one agency I get services from. They’re the people who provide personal care, which includes things that I absolutely can’t go without.

I don’t have a job and will probably never have a job. But there are two hours a week I ask them not to come, and one day a week where I ask them to come before noon. That’s it. Two are essential meetings with my case manager. One is a day when, if I’m feeling up to it (which is practically never these days), I go to an art program.

I have been told, explicitly, and continually, that even just those two hours a week alone. Without the day when people can’t come past noon. That just those two hours are limiting them too much. That it’s not fair to the LNAs or their scheduler. That essentially if I am not available 24/7, then I have no reason to expect proper care.

They’re the only game in town for the kinds of services they provide, and they know it. So they are able, as an entire agency, to regulate disabled people’s lives so much that if we have jobs, or even a couple meetings a week, we can’t expect care.

As far as isolation goes, the recreational program I was in last summer did that in spades. I was not allowed to use the phone except when they wanted it. When I was extremely ill, like on the verge of needing to be hospitalized, I was not allowed to call my power of attorney for healthcare. And when I tell advocates that we were not allowed to use the phone whenever we wanted, that is enough to send off huge alarm bells. They also only allowed contact with my case manager if they were the ones doing the talking and I was merely in the room. If they didn’t approve of something I wanted to say to my case manager, they refused to tell her what I was typing.

I’ve also experienced a really peculiar form of isolation that isn’t listed here. It’s happened to me several times in several forms with abusive caregivers.

It’s where they try to prevent contact with people, but they don’t do it overtly. They just start dropping tiny little hints here and there, that friends and other staff are not trustworthy people. That they, in fact, are the only trustworthy person in your life. That other people are saying bad things about you behind your back. That nobody else actually likes or respects you. This can be done so subtly that you barely even notice until you realize months later that this is the only person you’re talking to anymore, and they’re being horrible to you.

Related is something I never see discussed anywhere either. Where someone who is incompetent or abusive in almost all other areas, will have one thing they do to make themselves indispensible. It may be working longer hours than they’re technically supposed to, at a time when you’re not getting enough staff hours to meet your needs. It may be cooking you the best food at the cheapest prices that you can possibly imagine. It really accomplishes two things. First, you won’t want to fire them because you’ll lose the above-and-beyond support they’re giving you.

But the other thing is more directly related to isolation. They do all these extra things for you, but they also start doing things to make other staff look bad. It can be deliberately screwing things up for you and then claiming another staff person did it. It can be simply lying outright about someone else’s ability to help you. It can be implying that nobody else would ever do these extra things for you. The result is to elevate themselves while putting all other staff down, and making it so you don’t want to communicate with other staff because you don’t trust them as much as you trust this person.

EMOTIONAL ABUSE:

Punishing or ridiculing. Refusing to speak and ignoring requests. Ridiculing the person’s culture, traditions, religion, and personal tastes. Enforcing a negative reinforcement program or any behavior program the person doesn’t consent to.

I would add to this one something that specifically happens to people who can’t speak and use other means of communication. I have communication devices that speak, but a lot of time I have used ones that don’t speak to save time and energy. This means that someone had to read the screen. Sometimes when staff have been angry at me, they simply refuse to read the screen. That’s a level above and beyond the ordinary silent treatment because it makes it impossible to say a word to them even when it’s important.

INTIMIDATION:

Raising a hand or using looks, actions, or gestures to create fear. Destroying property and abusing pets. Mistreating service animals. Displaying weapons.

The last time I had a staff person raise a hand to me, it wasn’t even my staff person. This is the story I promised earlier about what can happen once you start challenging a caregiver’s power, or once they know they’ve been fired.

In this case, the person was a friend’s staff person. She was really good, except for one thing. She could not stay out of my friend’s stuff. If you asked her not to, she’d either pretend not to hear you, or laugh like you just made a huge joke and do it anyway. In fact, even if she wasn’t already doing it, the moment you asked her not to do something, she’d immediately do it. And it was getting to be a huge problem, because she was arranging my friend’s stuff in ways that made it inaccessible from a wheelchair and impossible for my friend to get any work done.

Every time my friend got out important paperwork, for instance, this staff person would “put it away” without asking, even to the point of putting it at the bottom of a box stacked behind and under boxes that my friend was unable to lift. My friend asked me to come along to help her advocate for herself when she finally drew the line for this person. She wanted to simply not allow this person into her living room.

At first, she laughed and tried to go in anyway. When we made it clear we really meant business, though, she began screaming at us. And I really mean shouting at the top of her lungs. She said that she was going to leave and refuse to cook dinner for my friend, who is unable to cook for herself.

I told her that was a form of caregiver abuse and not acceptable. She kept screaming about how she was “NOT THAT KIND OF PERSON” and that I needed to leave, now, and that she was not going to listen to a single word I said. In practice this meant shouting over the top of my communication device, which can only go to a certain volume. I of course didn’t leave, because leaving my friend alone with a staff person who was that angry would have been a serious danger to my friend.

But neither of us were prepared for what happened next. She actually raised her hand to me and took a swing, stopping short only when her hand was two inches from my face. Then she held it there shaking. After we got her to leave, she hung out outside my friend’s apartment for several hours. She claimed that she was out there doing work for another client, but she didn’t have another client during those hours.

Yes, all of this was reported. No, nothing happened to this staff person. That’s what happens in the system, especially in the kind of agency (most of them) that protect staff and not clients. Even in things like murder investigations this is usually true.

She also seriously distorted what we actually told her, when recounting it to other people in the agency. The things that made her the angriest were when we told her that withholding food is considered a form of caregiver abuse, and that the things she was doing with my friend’s stuff involved a power relationship that she wasn’t acknowledging. We carefully explained why it is that people who have this kind of power, often don’t realize it. We went out of our way to explain why she might not have noticed this and that we knew it wasn’t her fault. When she repeated it to others, it was “They told me that I was an evil, power-hungry person who abuses disabled people for fun.”

This is also an excellent example of why a staff person should never be left alone with someone who has reported abuse, has let them know they won’t be working there any longer, or that kind of thing. This woman gave no warning at all that she was going to turn loud and violent at a mere request to stay out of a specific room. I tell staff to stay out of a particular room sometimes for all kinds of reasons, and have never gotten a response that intense.

So basically…

There are tons of different ways to abuse power, and this only covers some of them. But this is the best description I’ve ever seen of stuff that nobody ever even acknowledges as a problem. Hitting people and sexually assaulting them are not the only kinds of abuse out there, and in some circumstances they’re not even the worst.

Also understand — I’m not saying that all caregivers are abusive, or even that all caregivers who do a few of these things sometimes are “bad staff” overall. But it’s hard to have power and not abuse it. And people need to be aware that caregivers have this unacknowledged power. And that lots of them abuse it. And that very few people care. Getting services is not a walk in the park. You will inevitably encounter people doing all these things and more. And you have to be prepared.

Contrary to what most people believe, caregivers are not selfless, self-sacrificing saints who never do us any harm, yet shoulder a great burden that leads to burnout, which excuses anything they might do wrong. That’s not even true of the best ones. Caregivers are human beings. Human beings do a lot of bad things to each other. Especially people they have power over. Caregivers have that power. And it is not wrong to talk about it, to point it out, and to say that what some of them do is very wrong and destructive, and not excused by burnout or stress.

And I’m not talking without experience here. I’ve provided care for other people. And despite the inevitable stresses, you have to find ways of handling them other than punishing the person you’re supposed to be assisting. You also have to be constantly aware of your own power.

I’ve also had caregivers who, while very good in some areas, did some of these things. And I’ve had to make decisions about that tradeoff. Should I find someone who does things worse overall, but who does fewer of these things? Or should I stay with this person and try to work out ways to manage the things they are doing wrong? That’s a decision a person can only make for themselves, and doing some of these things doesn’t automatically make someone the worst choice in caregivers. It all depends on the circumstances and the people. But it’s good to know these things are wrong, even when you can’t seem to avoid them.

Not everyone even knows these things are wrong to do. So I have a printout of this chart posted in my kitchen, and have given one to my case manager for training purposes.

And here are the contact information for the two places that came up with and publish this stuff:

Developed by: Wisconsin Coalition Against Domestic Violence. 307 S. Peterson St., Suite 2, Madison, WI 53703. 608-235-0539. Based on the model by the Domestic Violence Intervention Project, Duluth, MN. National Center on Domestic and Sexual Violence. 7800 Shoal Creek, Ste 120-N, Austin, Texas 78757. tel: 512-407-9020. fax: 512-407-9022. www.ncdsv.org.

On (Not) Having A Guardian

Standard

[I wrote this in an email to someone who was looking for people's stories regarding guardianship and lack thereof. She asked me to put it in a blog post so she could link to it in something she's writing. So here it is. It contains lots of information most people here know, because it wasn't originally written for here. This is also similar to a presentation I gave on this topic years ago.]

When I was nineteen years old, my psychologist told me that I was not a real adult. He told me that by virtue of being in the system I would always be a child. And that this was actually true legally so he and my parents would always have control over me.

He also told me that I would never be allowed to make adult decisions. Because he would be able to stop me. He would tell my parents what to allow me to do. What not to allow me to do. And that he would back it up with various manipulative crap about his professional opinion and that between him and my parents I would never get to do anything normal adults can do, without his permission first.

And he would set me nonsensical tasks to “prove my maturity” before he would allow me to do things. One of those things involved sleeping.

I have a circadian rhythm disorder called irregular sleep-wake pattern that can go both with autism and with a class of movement disorders I have. It means my sleep is pretty random without medication and other stuff. Even with medication it’s far from ideal. Anyway, he told me that to prove my maturity I would have to learn to sleep through the night. This is of course impossible for someone like me through willpower alone. Even taking melatonin at the time, I never truly managed it, but I faked it well enough to fool him and thus got what I wanted.

This was not guardianship. But it is my belief that he told me these lies about my legal rights as an adult, because it was easier than filing for guardianship. If you just convince someone they have no adult legal rights then they’re under a weird kind of de facto guardianship and you don’t even need to go to court! Although I think that if push came to shove he would have tried to get my parents to file for guardianship in the end.

The reason it never came to that was I was already involved in the autistic community. People in that community helped me (with a lot of help from my family) get onto SSI and move into my own apartment. They literally kept me alive by painstakingly helping me eat enough that even if I was starving I wasn’t dying. And when after several months of starvation and other ugly stuff I applied for developmental disability services they helped me and my family through that process as well.

To say my psychologist was unhappy about me living by myself in the mountains was an understatement. He was also unhappy that I had essentially fired him. When I moved out he, from what I’ve heard, threw a serious tantrum on the phone to my parents. Yelling at them for letting me do it. Telling them it would destroy me. But for whatever reason my parents stood up for me and he had no choice in the matter. After the tantrum and a few other things they began to seriously question his professional ethics.

I got developmental disability services about twelve years ago. At the time, my life was a mess and I could not reliably cook, clean, eat, drink, take meds, go to the bathroom in the bathroom (I was using the floor or the front yard half the time), or do just about anything else. With a lot of help I could do maybe one thing half-decently and another thing badly. And that wore me out to the point that I was constantly disoriented and shutting down and having seizures and stuff.

These days, I can do even less than I could back then. My movement disorder, related to autism, amplifies many of the difficult aspects of autism in addition to just the things people think of when they think of movement. I also have other conditions that have resulted in my living in bed except for bathroom trips, appointments, and if I’m up to it a couple hours one day a week at an art program. I use a motorized wheelchair that tilts back and the legs go up, a keyboard to communicate full-time instead of part-time, a hospital bed, sometimes a Hoyer lift, and an electric implant that stops muscle spasms so I can urinate. For all daily living tasks I need at minimum to be handed something to start off the movement, and at maximum the entire thing done for me. I get full support with things like bathing and intimate care. And a full list of my difficulties sounds to most people, including some of the people who deal with funding through the state, like someone who couldn’t possibly live in my own apartment. My outward appearance doesn’t help matters. I’ve been threatened with ICF/MRs and nursing homes many times.

But I do live in my own apartment with only a cat. I get services throughout a lot of the day. I was one of the first people in my state in a program that, as a substitute for a live-in caregiver, has a system so that any time during the night, I can get help within five minutes if I push a button or if any of a number of other alarms are triggered. The technology is the same as used in nursing homes, except that it keeps people in our own homes who would otherwise be forced to live somewhere with overnight care. My cat, adopted as soon as I initially moved out, is an assistance animal who is able to help me get unstuck during my motor freezes. She is a great help during the few times of day with no staff.

I still have no guardian. I have nobody pretending that I have a guardian either, and thanks to the self-advocacy movement I would no longer believe them anymore that I have no legal rights or am not an adult because I’m in the system. I do have a durable power of attorney for healthcare who can make decisions if I’m incapacitated or unable to communicate. With my chronic health issues and a tendency towards shutdown or delirium when sick (and language shutdown even when not sick), this person has been vital. I also have another person as backup if she is not around. These people know me extremely well so they know what I want in all situations. And even if they didn’t, my DPA forms restrict them so that they are not allowed to choose my death even in circumstances where many other sorts of people would want a DNR. This is especially important because as a person who often looks, in the words of a health professional who treated me in the emergency room, like I have “the cognitive functioning of an infant”. This makes some people think I’m not worth treating when I get sick and I’ve had way too many close calls even with these safeguards in place.

I do, however, have many areas where I’m not good at making good decisions. So don’t mistake me for someone who can just do all this on my own. There’s situations I just don’t understand easily. Lots of them. And I’ve put myself in serious danger many times as a result. But I have learned to trust a very small number of people who give me advice when I’m doing something foolhardy.

But they still allow me to make my own mistakes. They warn me beforehand and tell me afterwards why I should have listened. But they have never flat out stood in my way, nor shielded me from the consequences of my actions. This has allowed me to learn lessons that many people under guardianship because of bad decisions never get to learn. If you can’t make mistakes you never learn.

I firmly believe that there are a lot of people under guardianship for making bad decisions or for looking like someone who can’t make decisions at all. Who could learn to make good decisions. And who could learn to trust people who give them good solid advice without limiting their freedoms. I have met people just like me, even people who have much less trouble in this area than I do, who have guardians. And often that’s because people don’t believe they could ever learn to be like I am now: Able to learn from mistakes and able to take advice from a few very trustworthy people who still give them the opportunity to disregard it. And who can help them understand why a decision they made has certain consequences.

I am often not too great with cause and effect even now. I only just learned this summer, at the age of thirty, that choices that I make that endanger my health effect people who care about me. Often it takes a lot of repeated mistakes before I learn something. And because of certain features of my type of autism, I am prone to losing what I have learned and having to relearn it and lose it again over and over before it clicks. If ever. Despite writing well, I have large holes in various cognitive abilities that most people would never expect to be there. Some of them are unusual for anyone, and some of them are unusual for people with my abilities in other areas. Things like object permanence being a really shaky concept even through mid childhood, and still prone to disappearing. And these big gaps in my understanding of the world can seriously affect decision making at all levels. So can the fact that I am so shutdown-prone that any piece of knowledge no matter how basic can easily disappear.

But I don’t have a guardian. And while I didn’t start out able to do this, I have learned whose advice to trust and how to seek it out and heed it. That is a skill that if it’s not there a lot of people think it will never be. But I learned it and so can a lot of other people if given the opportunity.

To have that opportunity, though, the person they’re getting the advice from has to be someone who is actually wise enough to fill that role, and who doesn’t have ulterior motives. Even the kind of ulterior motives that family can have. For instance, not wanting their adult daughter to ever have sex. And using the fact that she’s DD as an excuse to restrict her sexuality in ways that they would never be able to do (however much they’d want to) otherwise. In my case it’s an older mentor figure, and another close friend. A word about mentors though: True mentoring relationships can’t be decided ahead of time or assigned. They have to naturally develop.

I may not be a typical success story, being unemployed and needing help doing just about everything. But I am in control of my life despite being exactly the kind of person who often has a guardianship. And that’s what matters to me: Being in control when I can, and having others know exactly what I want in circumstances where I can’t communicate.

I got very lucky to get to this point. I don’t think it would have happened if I weren’t involved in the self-advocacy community at the exact same time I was being taught that I wasn’t a real adult. And it would have either not happened or been very difficult if my parents had had other wishes, or if my psychologist had talked them into filing for guardianship once his lies fell through. And due to a set of circumstances that are too complicated to explain here, I am not sure I would have survived long, or become able to advocate for myself, if I’d been under guardianship. Either the real kind or the de facto kind under my psychologist’s web of lies. And I’m not exaggerating or being metaphorical about survival.

What Makes Institutions Bad

Standard

[I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it here. Summary of my very long response: Most people don't have the foggiest clue what's bad about institutions. What's bad is something you pretty much never hear about, which is the violence it does to people's insides at a very deep level. And that can't be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.]

Please, please, please everyone who talks about this in the past tense — STOP. This is still going on. Everywhere.

I can’t even explain what it feels like to read things like this. Because I think too many people get the wrong kind of idea.

They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things — the belief in those things — are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house — and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything — everything — that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception — a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant — even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there — she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression — this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage — what it is, what it means, where it comes from — you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization”. That’s where you live with your parents but you spend most of the day being driven between various places — segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free”, I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me — because of my particular history — I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.