Monthly Archives: August 2005

Leslie Burke Loses Legal Appeal for Food and Water While Dying

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As this link says, it was just ruled in Britain that a man can’t make a future decision on his own behalf to stay fed and hydrated after he loses all capacity for voluntary movement.

Outside the courtroom, Burke told the Yorkshire Post: “A doctor is not allowed to refuse me food and water while I remain competent.”

“But what is the definition of competent? When do I become an incompetent person? Is it when I am no longer able to communicate?”

“For those people who feel like I do there was no good news at all today,” he said.

This kind of decision is not new or unique. In the United States, there are many states that have “futile care” policies that can override the wishes of patients or their appointed decisionmakers. And people die on the basis of these policies every day. This trend is not just “no good news at all…” it’s terrifying on a scale that few people comprehend.

Put bluntly: Every time I have to go to the hospital, for anything, no matter how routine, I end up having to fear for my life. This fear cannot be explained away as anything other than a reaction to systemic and life-threatening prejudice. I’m scared because I can’t speak communicatively and hospitals have been known to remove or deny the importance of my communication equipment. I’m scared because one of my vocal tics, regardless of mood, is “Kill me!” I’m scared because I don’t always have voluntary movement and have sometimes been presumed dead by emergency responders. I’m scared because I’ve experienced attempted murder in a place that called itself a hospital. I’m scared because my decisionmakers, while clearly defined as having power of attorney, aren’t always going to be listened to.

I have as much legal preparation for my wish to remain alive as is possible. My Protective Medical Decisions Document was carefully crafted according to California law and is valid anywhere in the country. I have durable power of attorney forms that name staunchly anti-euthanasia people including one who’s been involved with Not Dead Yet. But if doctors are legally allowed to assume they know what the quality of my life is or should be before they get to kill me, then no amount of protection will stop them. And if my ability to communicate with them is compromised, they may one day be allowed to make decisions against my wishes which are all well laid out in writing and communicated into the future. Communication into the future doesn’t appear to count for the British court system.

I’ve lived without being able to communicate in a way that other people could understand. I’ve lived without being able to move. I’ve lived without being able to understand or interact with much of my surroundings. I’ve lived as a devalued kind of person while other people, who would not in any way have been punished for it and who appeared to believe I was mainly using up resources that could have been given to others, tried to kill me. Three guesses which one scares me the most.

Endangered…?

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Some geneticists are busy looking at parts of chromosomes 7 and 21 for a connection to so-called regressive autism. I’m still dubious about it being that simple, given that there are many possible causes for the things being dubbed ‘regression’. But if these are truly the main genes involved in this expression, then they’re probably talking about me: I lost prior speech abilities in early childhood and have lost a number of other abilities (including the speech I’d regained) later in life.

Meanwhile, the push is getting greater to detect autistic people before we’re born, so that we don’t have to be born. Eugenic abortion — as one person put it not the right to choose whether, but the right to choose who — is already so commonplace towards people with Down’s syndrome that one activist with Down’s syndrome, Astra Milberg, has commented that she feels like one of an endangered species, and several activists with Down’s syndrome protested at an international genetic screening conference for their right to speak out against this a few years ago.

I wish I could say I felt much of anything, but I’m more sort of numb. I know exactly where things are headed, and I will work as hard as I can to stop them just as I have been all along for people who already peg some people’s “don’t even get a chance at life” meters, but I guess I got the strong freaked-out emotions out of the way when I saw where this was going years ago. It’s just… weird… to know they’re getting this close to identifying the genes, and that they’re zeroing in on subtypes that sound suspiciously like mine.

Echostaffia and Power

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“We were talking about the way people were saying things in such a vague way, and he was telling me how someone had just told him about my asking ‘What exactly do you mean by that?’ when someone asked me something in vague and confusing terms. And… he laughed.” I was trying to explain it to my friend.

“That’s just about as funny as someone with an intellectual disability getting confused over four-syllable words is funny!” was her response.

“The worst part, though… was that I laughed too. I didn’t want to laugh. I didn’t mean to laugh. It was just…”

“Echolaughia?”

“No, it wasn’t just laughing because he was laughing. I was laughing because I was afraid not to. When I laugh around you, I feel like I’m really laughing. When I laugh around them, it’s self-defense.”

“Oh… echostaffia.”

Echostaffia is a good word for Cute Client Mode. The cure for echostaffia, my friend said, is genuine power.

Earlier today, I was reading a paper by Wolf Wolfensberger on something he calls Social Role Valorization, and how it’s in opposition to things like empowerment and self-determination. He says that it should be. That the power involved in the ideas of self-determination and empowerment is just a shallow sort of power anyway, and is power over other people, and all sorts of other excuses as to why his theory was more suitable than these other ones.

He said that there are large groups of people all over the world who are utterly powerless and utterly happy. My friend’s comment, when I was ranting about the sort of disempowerment I’d love to subject Wolfensberger to, was “Oh… there are lots of people who’ve learned echostaffia, that I’ll believe!”

I am not the sort of person who calculatedly constructs different images to show to different people. I couldn’t keep up with it. I have been told that I am remarkably consistent in my personality across all situations, whereas most people change a good deal depending on who they’re around. But there are still lines I won’t cross. And the vast majority of staff will never see some important aspects of me.

When I am around staff, I do certain things in order to survive. When I am around friends, I don’t have to do those things. Hell, when I’m around strangers, I don’t have to do as many of those things.

I learned to hide my feelings, especially negative ones. The very first day in the state hospital, I received a valuable piece of advice. Feeling frightened, abandoned, and alone, I started to cry in the day room. Another patient came and sat beside me, leaned over and whispered, “Don’t do that. They’ll think you’re depressed.” So I learned to cry only at night, in my bed, under the covers without making a sound.

My only aim during my two-month stay in the state hospital (probably the longest two months of my life) was to get out. If that meant being a good patient, if that meant playing the game, telling them what they wanted to hear, then so be it. At the same time, I was consumed with the clear conviction that there was something fundamentally wrong here. Who were these people that had taken such total control of our lives? Why were they the experts on what we should do, how we should live? Why was the ugliness, and even the brutality, of what was happening to us overlooked and ignored? Why had the world turned its back on us?

So I became a good patient outwardly, while inside I nurtured a secret rebellion that was no less real for being hidden. I used to imagine a future in which an army of former patients marched on the hospital, emptied it of patients and staff, and then burned all the buildings to the ground. In my fantasy, we joined hands and danced around this bonfire of oppression. You see, in my heart I was already a very, very bad patient!

-Judi Chamberlin, Confessions of a Non-Compliant Patient

News flash to the vast majority of staff: That ‘contented client’ of yours may be plotting revolution in her head. When we are going along with what you say, it can be more about our legitimate fear of you than the inherent wisdom and rightness of your ideas. When we laugh with you while you laugh at us, it may be because we’re afraid of what will happen if we don’t. You can build entire relationships that you consider deep and meaningful, and the relationship is actually with the actions we use to defend ourselves against you. Some of you call that connection, I call it disgusting.

You may talk about trust. But in a system that routinely harms us, trust has to be earned. You don’t earn trust by talking about how wonderful you are. You earn trust by demonstrating that you’re trustworthy. Doing, not saying. And demanding that trust, demanding that we “open up” to you or whatever your jargon tells you we must do in order to “establish a relationship” with you… that’s the surest route to never being trusted. Most of us have been hearing this our whole lives, after awhile we stop buying it.

The paper on Social Role Valorization says that being ‘protected’ is more important than having power. It talks about people who were ‘dumped’ from institutions, who ‘fiercely defend’ the power they have, while leading ‘miserable’ lives in worse material circumstances than institutions. Instead of actually learning that there are more important things than the pseudo-protection that institutions claim to offer… the author goes on to dismiss such people as essentially defective, stupid, crazy, short-sighted, and so forth. (Not to mention invoking in people’s minds the old false dichotomy of abuse vs. neglect, confinement vs. abandonment.)

One of the reasons I believe I was able to escape the role of chronic patient that had been predicted for me was that I was able to leave the surveillance and control of the mental health system when I left the state hospital. Today, that’s called “falling through the cracks.” While I agree that it’s important to help people avoid hunger and homelessness, such help must not come at too high a price. Help that comes with unwanted strings – “We’ll give you housing if you take medication,” “We’ll sign your SSI papers if you go to the day program” -is help that is paid for in imprisoned spirits and stifled dreams. We should not be surprised that some people won’t sell their souls so cheaply.

-Judi Chamberlin, Confessions of a Non-Compliant Patient

Power, real power, not whatever false-ego-power-crap Wolfensberger was reducing empowerment to, is important. It means that echostaffia and Cute Client Mode, and the pretty lies that staff construct around them, don’t have to exist. If things were really so wonderful off in staff-land, we wouldn’t have to use that mode to appease staff. And we wouldn’t be taught that this is all our problem, that if we were just more trusting or whatever, they’d be more trustworthy or whatever (or that there’s something wrong with our attitude and outlook, or…).

I hope one day to have enough power that I will not have to deal with the confusion that comes after even a brief lapse into Cute Client Mode. The difference between spending time with a friend, and spending time with staff, is striking. Also the difference between spending time with staff, and spending time afterwards alone to deal with the aftermath of all this. I can’t describe it. I just know how disgusting it is.

All those “unmotivated clients” I keep hearing about are the ones who are on a silent sit-down strike about others’ visions of what their lives should be like. When I ask professionals what it is that their clients are “unmotivated ” about, it usually turns out to be washing floors or dishes, on the one hand, or going to meaningless meetings on the other. Would you be “motivated” to reveal your deepest secrets to a stranger, for example, someone you have no reason to believe you can trust with this sensitive information? And, more important, should you be “motivated” to do so?

-Judi Chamberlin, Confessions of a Non-Compliant Patient

I would rather have power — not tons of it, just what’s necessary — than have some staff running around trying to save me from a non-valorized social role, any day. And I’d rather have power than have to deal with my entire personality being temporarily tweaked by random encounters with staff who don’t even notice when it’s happening because they already have so much power.

Wandering

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When non-autistic people walk out of their homes, they are “taking a walk” or “walking somewhere” or something like that.

When autistic people walk out of our homes, we are… wandering!

I don’t know what it is that gives people that impression. But I have been accused of wandering when:

  • Taking a walk.
  • Waiting outside rather than inside for staff to show up.
  • Trying to take a bus.
  • Running away from a fight that broke out at a day program.
  • Leaving the room to avoid reacting physically in anger.
  • Trying to escape institutions.
  • Going on long walks to explore the geography of an area.

The assumption in all of these cases and many more is that we are just kind of moving around without any point to it. I suppose this should not be surprising, since most of what we do is described as purposeless and pointless.

If I were to walk out the door right now — walking, without any mobility aids to make people afraid to look at me or whatever it is they do — I bet someone would call the police in a matter of minutes or hours, to report a “wandering” person in their neighborhood. (Possibly more adjectives would be added, such as disoriented and unresponsive to being shouted at. I have also been described by one neurologist as having some sort of unspecified but severe ‘psychiatric issues’ for, after many years of this being the case, fearing it enough to get a Medic-Alert bracelet — something I did on the advice of a disability professional, mind you.)

But it gets even more interesting. I do sometimes do things involuntarily, without knowing why I do them (I assume there is still a neurological purpose to them), and sometimes while very confused. It is at these times — times when the whole concept of attention is often lost on me or the last thing I want — that I am often referred to as engaging in deliberate, “attention-seeking” behavior. And I have seen this same concept applied to other autistics doing the same thing.

Why our behavior is presumed to be the result of purposeless confusion, while behavior toward an identical goal by others is not, is still a mystery to me. As is why, when our behavior does involve some amount of involuntariness or confusion… suddenly we’re “fully aware of our actions and just using them to manipulate people or get out of doing something”.

Not all those who ‘wander’ are lost. Or even wandering.