I’ve never seen it. I mean, sure, I get angry, but I also get a lot of other things, and I don’t run around angry all the time. And quite often I will write something where the predominant motivation is love, for instance, and get told how angry I sound. I have also once read a person say that they could not get through Jim Sinclair’s “Don’t Mourn For Us” because of the tremendous rage towards parents that they felt in it — that is an article in which I can see very little but love. Not that love and anger can’t coexist, but I just don’t see the anger supposedly permeating Jim Sinclair’s work or my work and so forth.

Anyway, I found this interesting lyric the other day by Ani Difranco (who seems to write a lot of interesting lyrics but then sings them in a style I have trouble wanting to listen to, so I can’t really be classified as a fan of the music, but perhaps sometimes a fan of the lyrics). I can’t even remember how I stumbled across it. It goes like this:

I am not an angry girl
But it seems like I’ve got everyone fooled
Every time I say something
They find hard to hear
They chalk it up to my anger
And never to their own fear

I don’t know that it’s always fear that causes that reaction. I’ve often noticed that someone will read something that makes them angry. And then decide that the author of whatever they were reading, was angry. I also know that a lot of people view anything that explicitly contradicts something else as “argumentative” and therefore “angry”. And that a lot of people have a stereotype of activists as perpetually angry.

So fear isn’t the only thing that could cause people to see anger that isn’t there. But it’s one thing. And there does seem a trend in my life of being considered angry when I’m nowhere even close to anger. Of course a lot of people, particularly autistic people, see the actual emotional state that is going on at any given time too. But it’s amazing how many people read what I write and can’t come away from it with anything more than a vision of me as “angry” that seems to make them completely unaware of whatever it is that I’ve actually written and hostile to me as a person instead. (Of course there’s then the whole problem of people taking more from what they perceive as the emotional content of something, than from what was actually meant or said. But that’s a whole ‘nother topic.)

Until the problems autistics.org is having are sorted out (and it’s not a simple issue of scripts — we have scripts and know perfectly well how to use them — but other problems), this is going to be where I stick my blog. Once everything is back to normal, all the entries from here will be moved back to (and appended to) my blog on autistics.org.

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.

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.

It seems like it’s some variation on the same thing every time.

You come into my home.

You have some set of values that you’ve learned through a seminar or wherever else professionals go to learn these things. They go by a lot of names, most of them buzzwords: Self-determination, client empowerment, etc. You also have a bunch of values around the right way and the wrong way to relate to people.

You come into my home, and you press these values on me. Sometimes gently, sometimes admonishingly, sometimes forcefully. You rarely wait to be asked for advice, or reflect on whether I want or need your advice. You just do it.

If I resist in some way, you invoke reciprocity, equality, respect, and other things like that. It doesn’t seem to occur to you that putting a nice veneer over things doesn’t mean you’re doing the right thing. Or that I might do things the way I do them for a reason. Or that in bringing your values into my home and insisting that I follow them in a relationship I’d rather not have with you, you are doing the opposite of things like self-determination or empowerment.

You don’t think about this. You assume that you are benevolent, and therefore that my resistance is not benevolent. If I am going along with you, it is because you are right, not because I am afraid of you. You act utterly unaware of the power differences between us, often because this upsets your notion of equality.

Most disabled people are not going to talk or act in the ways that you have been taught are the only respectful ways to talk or act. Because most people are not going to talk or act this way. But around you, we’re not allowed to be regular people.

We have to be a mirror image of your values, because to you that is equality. You don’t acknowledge this at all. You have all these wonderful bright shiny ideas whose original intent was to be respectful to us. But even when those ideas are correct, you act as if they are contingent on our acting the same way towards you. Whether or not we’re capable of it. Whether or not our own value systems agree with it. No matter how much harm it causes us to go along with it.

If we don’t act that way, you think we need it… explained. Or you think you’re justified in withdrawing any respect you showed to us. Respect for the right of disabled people to determine our own lives isn’t contingent on us getting to know you, on us talking a certain way to you, on us following a certain way to act, on us even liking you. But it’s so much easier, since you have the power to do it, to withdraw respect for us whenever you think we don’t respect you.

In the middle of this, I try to speak up, but it’s hard because of all the soft wonderful words you wrap everything in. You make the unreasonable sound reasonable, the inhumane sound humane. And often you actually believe it. “In the language of Orthanc, help means ruin and saving means slaying, that is plain.”

Then… someone walks in who actually knows me. It only takes a second to see what has happened. They say so. It breaks the spell of silence and softness. But then they are blamed. For getting me agitated. For “speaking for me”. For being judgmental. For not being soft and mild and sweeping things under the rug. For not using “I-statements”.

You sum the whole thing up with “Things were doing just great before you came in…” What this means is that when you were speaking for me without realizing it, things were fine. When someone else is interpreting my behavior into English, then something’s wrong. Even if they’re more right than you are. You’ve built up an imaginary world where I am relating to you in your ideal way because I want to, rather than because I know that relating to you in any other way could be dangerous, especially without witnesses.

This has happened more than once. It happens over and over again. It happens to more people than me. But if you — the people who do this to disabled people — read this, I doubt you’d think it applied to you. You would probably either focus on me for “misinterpreting” things or being ungrateful for your wonderful attitudes, or skip over that and believe I must be describing some other encounter with some other staff. It couldn’t possibly be you. Because you mean well.

And the scary thing is that if you read this, you might end up applying it in some other way that disempowers disabled people. Just as you have used the word self-determination to undermine my self-determination, the word empowerment to make sure that I am disempowered, the word independence to ensure that I am dependent on the people you prefer. Unless you understand the underlying facts of these situations, in terms of power, in terms of ability, in terms of a lot of things, you can toss around words all you want and all you’ll get is the same scenario. Over, and over, and over again.

David Rovics wrote a song once. He said, “If you find this song offensive, it’s probably about you.” I am sure that many people who have done this to me would find this highly offensive, disrespectful, and a number of other things. After all, I’m not being grateful, I’m not following a set of values I never agreed to in the first place, I’m (in their eyes) contradicting the things I said and did while too terrified to do anything else (which they will see as dishonest), I’m not giving them the chance to prove that they are different and they are the one that’s not doing this. (Hint: Don’t tell me and demand gratitude and obedience. Show me. If you aren’t doing this, I’ll find out, and I won’t need to be told. If you tell me, and then want something out of me based on your saying you’re not this kind of person, then you almost certainly are this kind of person.) And I’m certainly not couching this in terms of my feelings, because it’s not about that.

It’s about power, and who has it, and who doesn’t, and who maintains it while thinking or acting like they’re not. And who sits there going along with more than they want to in meetings because they’re legitimately afraid and things are moving too fast and language is confusing and so forth. But who can type out later exactly what’s going on.

Retirement community sued for refusing to allow hiring of personal attendants.

This lawsuit has a lot to do with the notions I talked about in my last post, about other people’s notions of what disabled people need at any given time. In particular, about the notion that people who need a certain kind or level of assistance belong in a certain kind of building.

In the developmental and psych systems, the hierarchy of kinds of buildings — regardless of what’s actually provided in each — tends to run from large state institutions, to private institutions, to ICF/MRs and group homes and halfway houses, to “supported apartments” and “mental health housing”, to assistance in one’s own apartment. Physically disabled and old people deal more with the threat of nursing homes in particular, although people with CP are often put in the developmental system.

In this case, the woman hires and receives assistance from attendants in her own apartment. The managers of her apartment complex are convinced that this level of support is only possible in a nursing home, despite the evidence in front of them that she is getting exactly this level of support outside of a nursing home.

This is also what happens when people say, “My daughter could never live in her own apartment, she needs a group home.” Or, “My son is in the most restrictive environment possible and I aim to keep him there.” (I heard that last one word for word at a conference on inclusion for DD people. The woman went on to describe a son whose behavior — and reactions to confinement — strongly resembled mine at his age.) People really do believe that the size and shape of a building dictates the amount of assistance people can receive, and that they have the right to decide for us what size and shape of building we should live in.

And that prejudice, as usual, shapes policy, and that needs to change.

Defining Autistic Lives is a review of Sue Rubin’s movie, Autism is a World. One that I mostly agree with.

I finally got the chance to watch the movie. A lot of the things I would have to say about it are covered in Defining Autistic Lives. Among the things that are not, what stood out to me over and over again was the behavior of staff and other professionals.

I’m way too familiar with a particular kind of staff behavior. I don’t know how to describe it. It’s patronization with a veneer of friendliness over it. That behavior has been present in all but a few people who’ve worked for me. I am startled, in fact, when I do not encounter it. I am so conditioned to being treated in some manner like a child that I frequently forget what it’s like to be treated like an adult.

When I’ve had the opportunity to interact with people I know who are primarily known as physically disabled, their staff seem to have overall less of that tendency. That tendency is still there in some, but I have a good chance of seeing staff without it. In the developmental disability service system I could wait years and only see one or two, if that, who don’t behave like that.

I am not surprised that Sue Rubin’s staff behave that way. In all the time I’ve spent in California’s DD system, I’ve only known maybe two who haven’t, and even they’ve slipped into it from time to time. What’s also worrisome, and also difficult to pin down, is how people like me, and quite possibly like Sue Rubin (although I obviously don’t know her background enough to say that for sure), are socialized to behave certain ways in response to that kind of staff behavior.

From here on out, I’m not talking about the movie except when I explicitly mention it.

I call it Cute Little Client mode when I do it. It feels like someone else is taking over my body. One of the best examples I have comes from when I was running around the house and couldn’t stop. I was getting out of breath and started having an asthma attack and screaming at the same time, so my staff at the time decided to try to help me stop. She put up her hands and told me to put up mine, and something about the way she did it triggered Cute Little Client mode.

When I put my hands against hers, and ran into them, I switched into this weird giggling. I didn’t find anything funny, or amusing, or anything, and I knew that this was some bizarre conditioned response and not a response of my own. (Yeah, the running around hadn’t been my intentional doing either, but the giggling and other behavior at that point was a whole ‘nother kind of involuntary.) I felt kind of sick and creeped out. Her response to my mannerisms at that point was to treat me even more like a child than she normally did. What needed to happen, happened — I got under a weighted blanket and used my inhalers — but the manner in which it happened was patronizing and infantilizing. I was happy when her work shift ended and I could lie there and sort things out in my head without going through all these weird triggered responses.

My current staff says she’s seen these things in another client I know, too. Staff like to trigger a certain response in him that looks eerily automatic to her. Then they congratulate themselves for having “connected” with him, and basically go on about how cute he is, whether they say it out loud or not. When he stops responding that way, they do the same thing over and over until he’s worn out. What is eerie is that they don’t seem to be responding to him, but to some sort of cuteness mechanism.

Since he can’t talk or type, I’m not going to say that’s what’s going on with him definitely. But I’ve certainly experienced the same. Staff push and pull on me mentally in certain ways and I go into that mode. They find it cute and sometimes believe they’ve connected with me in some “special” way. I struggle hard again st it and sometimes succeed at stopping all movement, which they find alarming and wonder why I just switched off like that. Then I try to reorient my mind to something other than being cute, compliant (or only cute forms of “non-compliant”, like my friend Vanesa sometimes managed in one institution, she was a master of Cute Client Mode and even had “naughty-but-cute non-compliance” down to a T), sweet, and pleasing to staff.

Thinly-veiled patronizing staff behavior disturbs me to watch. Feeling taken over, almost possessed or puppeted, by the cute-clienty behavior makes me feel physically ill in a way that just plain ordinary involuntary behavior doesn’t. I don’t know where I learned it, but I have a suspicion it’s yet another institutional survival skill, both in the enclosed kinds of institutions and the institutions that pass for community. Watching the staff end of that behavior — not sure about the client end, because I’m not in her head, but I wouldn’t be shocked since she’s in the same developmental system I am and a lot of us there seem to pick it up — in that movie reminded me pretty jarringly of what Cute Client Mode feels like.

I will welcome a time when nobody has to act like that. I will also welcome a time when it doesn’t pop up to haunt me in random interactions with people. I know very few people who can see through it and realize that I am not gleeful, but sickened.

Autistics.org has been non-functional and I’m still trying to get this blog up and running again.  Most of the data has been lost, so I’m starting over.  I am especially peeved that “Lessons on Inclusion from a Segregated School” has gone missing.  I may try to reconstruct some old entries that I have a cached version of, but others are likely to be gone now.  [Edit:  “Lessons from Inclusion…” is gone permanently.  I still have others somewhere.]