Of course, there was stuff about how sad it was to take an infant’s life, but the story emphasized how horrible his birth itself was. This writer even described the obesity and baby acne he developed from the medication as reasons why the kid was a sickly, depressing little crotchdropping (a medical term was actually used, but the implication is there).

The baby weakened and died, of course. As the parents weep, our good doctor consoles himself with the thought that the patient’s life, should it have continued, would have been an unending series of pain and torment.

I can tell from the story’s details that the author has worked in a real neonatal intensive care unit. I was a blue baby myself and I thank my lucky stars that this wasn’t the person who delivered me…talk about burnout.

There’s a serial killer named Michael Myers, and he’s escaped from the psychiatric institution he lives in. (Ugh already). His psychiatrist says the killer is not a real person, but is somehow pure evil shaped like a person. The psychiatrist’s evidence? The killer doesn’t talk (but is faking!), is catatonic (but faking!). The psychiatrist says at one point:

“I met this six year old child with this blank, pale, emotionless face, and the blackest eyes; the devil’s eyes […] I realized what was living behind that boy’s eyes was purely and simply…evil.”

So the movie demonizes behavior that isn’t very scary and uses it as evidence that someone isn’t a person. When there are plenty of people who have those traits.

John Carpenter, who wrote and directed the film, says he was inspired by a trip to a psychiatric institution he took in college, and the “creepy,” “unsettling,” “schizophrenic stare” of one of the patients there.

But of course, that entire book was like getting whapped over and over again with virtually no actual story to be had. I only finished it because I felt like sometime I’d have to bear witness to what was actually in it, and it was part of the entire inspiration for writing my new blog, because that had just gone too far in all the wrong directions and a lot of people are totally willing to lap up that kind of thing with no questioning it at all. (The same way many medical conditions share properties of that book — they’re written to include no awareness, even though the tests they use to “test awareness” are also tests of ability to respond. For instance, I’ve known several people who were totally aware during comas — sometimes in a somewhat altered state of consciousness, sometimes just unable to responds — and some people diagnosed with persistent vegetative state in the same way all other people are diagnosed with PVS, have been proven through brain scans to be able to respond to requests to imagine themselves carrying out certain motor activities. However, when you bring these things up, what you hear was “They were misdiagnosed because our circular definition of these conditions doesn’t allow for people to have any awareness. Even though what we call “lack of awareness” is determined by a certain kind of lack of responsiveness that doesn’t always test awareness.”)

And yes any book that includes mercy killings… those don’t even feel like being whapped with something. Those feel like someone beating the crap out of me and telling me it’s good for me. And can make me do actual violence to the book in question out of a sense of self-preservation. There are very limited circumstances where I don’t mind it, but they’re very rarely what turn up in a book. (I recently saw an online Star Trek thing where they shot a guy with a phaser after a too-enormous-to-do-anything-but-run-from pile of bloodworms had rapidly eaten most of his body, there was no way to keep him alive after that, he was clearly about to watch the rest of himself get eaten, and there was no way to help him. That didn’t bother me any more than death in general would bother me, because circumstances like those occasionally exist — usually in wartime — and they’re not generally circumstances where life could be sustained more than seconds to minutes anyway, and the person is usually in a situation where they can make it clear what they want. (I wouldn’t want the “seconds to minutes” thing applied to, for instance, infants. Which it sometimes is, and I don’t like that.)) But those situations aren’t what I normally see in stories, I usually see the kind you’re talking about. And yes, it’s horrible.

I think the reason that particular kind of story feels so much more awful is because things like those are a direct threat to the lives of people like me in real life too (and are very close to rationale I’ve actually heard for “allowing me to die”.) So they feel like an actual immediate threat.

Guy gets hit by a ‘mind-destroying ray’ that has never been tested before, and he’s lying on the ground unmoving with a blank stare, and everyone just agrees on the spot to kill him because his mind is gone, never considering that the effects may be temporary, or he may be aware but unable to move, or he may be aware in some ways but not others.

And that’s one of the more ‘reasonable’ examples. I’ve seen people in stories treat many supernaturally transformed people (such as zombies) who are obviously aware but not the same as they were pre-transformation as if it’s actually doing them a favor to kill them mercilessly. Even if (especially if) the transformed person seems to actually like their transformation, or at least isn’t too upset about it.

And stories like Buffy the Vampire Slayer have even the supernaturals agreeing that their lives aren’t worth as much as humans – when the other vampire slayer Faith mistakenly killed a human, the vampire Angel was just as horrified as the human characters were. And in his spin-off show he goes to extraordinary lengths to avoid killing humans who rival the supernatural bad guys for evilness, even though he kills those bad guys without concern.

Then there’s the shows that have the ‘episode where a character is terminally ill and begging for assisted suicide’. And it goes straight from diagnosis to the request to the person’s death within a single episode, and they’re forgotten from then on. If they don’t kill the character, they find a cure instead, because heaven forbid someone actually *live* with a serious disability or illness. This is one thing I really liked about the Supernatural series, because Bobby spends most of a season in his wheelchair and actually adjusts to it before he gets cured – against his will (more because of fear of the costs than not wanting a cure, but still). I also liked the way Dexter did this plot, because they have a *serial killer* taking several episodes to decide whether or not to kill the person begging for assisted suicide.

It also bothers me how whenever a character ends up with a series disability, all the day to day realities of the disability are offscreen. You get a few snippets to look dramatic, but they seldom actually spend much time on the care of the person. One thing I liked about Dexter is that he had several lengthy onscreen visits to his dying friend, and provided some physical care to her (suctioning her).

I was basically taken in and out of this place for a long time. I preferred being out of it, but then I was in highschool where people were watching me VERY closely pretty much all the time and there was this constant threat that I would be sent back if I messed up slightly. So I ended up having to act similar in and out of it until I eventually managed to stay out of it for a while and graduate high school early. I also knew one person who described the day program as “taking away the only good thing about it” and she actually preferred being there full time to a day program because it meant she didn’t have to deal with the harmful situations OUTSIDE of the institution. So I can definitely see how “community living” could be just as bad.

I actually have been doing pretty well in university (it’s all music classes now which helps), although I almost had to drop out early on at one point. That is when I had to choose the passing things and actually doing things that were important to me- I could either pass OR go to university, but not both. I’m at a second university now for academic reasons and they have been pretty good about working with me or at least not actively working against me.

I still have had problems with the police and such. They made me go the hospital once and the emergency room people made me sit in a room by myself for a long time. When they talked to me I told them that I was trying to get evaluated for autism/asperger’s syndrome and they were like “That makes sense but we don’t think you are having enough problems to warrant emergency psychiatric treatment.” And I’m like “Of course not” and they let me leave after charging me several hundred dollars.

I’m not sure why their opinion changed since I have been hospitalized for having less problems than I was then. But I’ve mostly been able to get the police to leave me alone since then, at least after I manage to convince them that I’m not on drugs. It makes them calmer when I tell them I have an apserger’s syndrome diagnosis now and they’ve never actually hurt me. I guess the fact that I totally cut contact with the old bunch of psych people helped. I currently have no drugs or so called therapy; some people think this is irresponsible of me but I don’t regret it.

I’m sure the newfound bursts of energy are exciting………..(the number of new comments/blog posts here has increased dramatically…….)

I feel awful for your family after reading your comments…….to have strangers try and take you away……..and tell them that they aren’t taking proper care of you (and therefore must not love you…….although you didn’t mention that, it can be pretty easily inferred………)….

Word/vocabulary question: If one is disgusted with something (as I am, reading about how terribly you and your family were treated……….) and the disgustedness comes from genuine empathy and not self-righteousness (oh I would NEVER put someone through that……….I’m better than that) is there a better more accurate term for it?

Indignation? This kind of thing bites my brain……when I can’t figure out words for feelings……….

Maybe it just means I shouldn’t try to climb back up into the mountains when my brain is having thoughts that are better served by being in the valleys? (shouldn’t look for words to describe things that language isn’t good at describing in the first place?)

Pancho: I feel what you said about being at university and getting more stressed out and off-kilter. The first four weeks of this term, we sat in class……….but understood very little of statistics and probability. Spanish is fortunately easier.

Amanda: I definitely don’t mean to be condescending in my opening remarks……

My parents managed just barely to convince them to put me in a small residential facility rather than the state institution, after I got out of the two months in the temporary private institution. (I knew, but they didn’t, that the state institution might have been the better option of the two. You learn certain things from being inside that go beyond surface appearances, and sometimes the one that looks more hellish is at least marginally less hellish.) But it was a facility from hell, and I was (after in the first place being subject to some serious torture methods that managed to scare me into being more compliant) tortured some more and taught to be exactly what they wanted me to be. It wasn’t exactly passing for normal, it was more like passing for a different kind of abnormal than I naturally would have been. But it eventually (along with several other factors) got me out of there.

And from there, I went into what I call “community institutionalization” or “stealth institutionalization”, where I was, aside from my parents’ house, always in segregated, institutional-power-structure places, but went around by car to different places so they call it community living. Like home to special school to day program to home to other day program etc. This meant that for me there was literally no clean line between being locked up and being “out”, and I will probably never be able to say “how long I was institutionalized” for real. (Because for real means counting anything with that power structure, not just traditional institutions. Because seriously there are a few differences between traveling between different sites on an institution’s grounds, and traveling by car to different little pockets of institutionalization that exist “in the community” and then going home with your parents for part of the day, but they’re not as big as most people think they are. It’s perfectly possible to set up an institution in a single house or apartment for one person, if you do it right, and some “community living services” are actually exactly that.)

So the effect this all had on me was always feeling that I’d never left. Because there’s no clean break. And I’m still finding huge amounts of assumptions I learned in institutions. messing with my head and my ability to do things. But I’m getting better at it.

I actually tried university as well, and it went extremely badly. And I, also, am very lucky that nobody locked me up at that point. Instead someone helped me get SSI and into an apartment of my own, and then many months of utter disaster later, services. And since then the only institutional situations I’ve been in were maybe a half a day in a mental institution, and then various “stealth institution” situations to varying degrees. I consider myself fairly lucky all things considered in taht I managed to get out and that I am getting fairly appropriate services without too much disrespect.

The “passing as a different kind of disabled” thing… you’d be really shocked how much, if you take basic standard autistic body language (or standard for me anyway), it doesn’t take a lot of anything else for people to see psychosis as fitting. (In fact, I’ve known many, many autistic people who’ve gone to both the developmental and the psych system, and in the DD system they’ll be considered autistic and in the psych system they’ll be considered psychotic. Even without hallucinations or anything like that.) Answering questions literally, saying things by accident due to language mode being weird, seizure and migraine auras producing odd visual and auditory (but mostly visual and almost entirely things like geometric shapes and buzzing noises, and generally stuff I’d almost classify as “electric” rather than like real objects or voices or anything), and that’s even more fun. Then add in lots of different factors conspiring to make me think I was required to say and do certain things indicating “hearing voices” and other things like that, and it was just really bad news for me. (Especially because several antipsychotics are deadly to me.) And that’s before I had some really weird med reactions that made things worse, and before I ended up being tortured by this guy at the residential place who was bound and determined to make me “admit to” being “schizophrenic” and then likewise “admit to” being helped by him. (He actually told me that he was God to me and that he would climb into my head and never get out, because I was obviously unqualified to run my head myself. Among many other seriously unethical things. Apparently the doctors at that place had heard of my autism diagnosis, told my parents I wasn’t “schizophrenic”, and then the moment they actually got hold of me they switched it on them and blamed my mother for causing it, saying I’d really been “psychotic” since infancy and it was her fault. Talk about a way to screw up a family.)

So while I wasn’t passing as “normal”, I was passing as something that weirdly enough let them eventually let me out of there as a “recovering schizophrenic”. (Then the school district basically saw the number of diagnoses I’d had and listed them all and didn’t much choose sides. I then went to a school that supposedly specialized in people considered both developmentally and psychiatrically disabled at once.)

Unfortunately it’s the sort of thing that’s so complicated that if I tell one part of it, other parts by necessity get left out.

Amanda Baggs I had to deal with a similar situation in some ways although it worked out better for me than it did for you. The only time I tried to kill myself was when someone in a short term institution was talking about sending me to a long term one because the short term one wasn’t helping me. At this point I decided that they would never let me out because they would judge how good I was doing by if I was reacting negatively to being harmed. And they would then use that as justification to do even more harmful things. If I succeeded they would have used it as evidence that they hadn’t done enough harmful things, too.

Where it worked out better for me was that I basically had even my silent/internal sense of autonomy broken down and started being much more subservient. And while I was doing that I started learning how to “pass,” something that no one had made me do to that extent before. I got to be pretty good at it and if I couldn’t pass in some situation I would just avoid that situation, all of which you’ve said was not an option for you.

Then I started attending university and started having some of the problems I had had earlier and I was absolutely terrified because I was becoming less and less able to do the “passing.” I then started making plans to get all the money I could and run away by train to a big city where I could hide from people who wanted to put me in an institution while living on the streets. This is around when I started thinking that maybe I was autistic.

What surprised me is that no one tried to put me in an institution and I’ve been gradually regaining confidence in myself (thanks in part to you, among other influences). I’ve been allowing myself to be more conspicuous sometimes too. I’m possibly “living independently” now although the time I spent living by myself was pretty awful. I plan to only stay in dorm buildings or rent an apartment with other people, which apparently still counts for some reason.

I feel like it’s totally arbitrary that it worked out differently for me. I don’t know why some abilities are more important than others.

I’m actually at the moment putting together an entire blog to deal entirely with “empty shell”/”useless eater” type attitudes to disability, because I really see anything that threatens to take away our fundamental core of personhood to be a massive threat to all of us. Especially with the world’s economy going to hell. (I’m also trying to put together a video requested by a friend, that emphasizes our value as human beings. Which is really hard now because I’m in bed all the time except bathroom trips and doctor visits, but she told me I have a lot of time to put it together in so not to rush anything.) I’ll of course let people know when I’ve got that blog running.

And yes, that was an enormous part of my suicidal tendencies as a teenager.

I was in a situation where I basically knew the shape of things, and nobody else did. I knew that I was losing abilities that I’d formerly either had or made myself appear to have (so was also losing the ability to pretend to be “okay”). And once I finally cracked under the strain of being pushed to do more and more while truly able to do less and less, everyone’s first impulse was to try to restore me to a degree of functionality in various areas, that I never had in the first place, and was totally imaginary.

I was presented with basically two views of my future. One was that I would remain disabled, and be institutionalized forever. (At one point I had an insurance company actively trying to make me seem as bad as possible to try to take me away from my family, make me a ward of the court, and put me in a state institution from the private institution I was in already at the time. They pulled out all the stops including simultaneously accusing me of being as messed up as humanly possible, and accusing my caregivers of somehow causing my conditions. That is why my doctors went for PDD-NOS on paper even as they said “autism” out loud. They were trying to give me a fighting chance.) And the other was that I would be completely cured and live “independently” by my twenties.

I knew the truth that nobody else was willing to face at the time: What was really happening was that they were giving me “treatments” that made me overdo things for a little while in the hopes that it meant the treatment was actually working. Then I’d crash because that level of ability was unsustainable. The more this happened, the less abilities I got back in the end.

Everyone else was pretending to themselves that the opposite was happening. I remember once seeing a chart that purported to show my “functioning level”. (It was a graph with “low functioning” at the bottom and “high functioning” at the top — during the period it had been written in, it never got anywhere near “high functioning”, although they extrapolated that somehow in the future it would.) And it was exactly upside-down as to how I was actually doing and feeling. The time period that I felt the worst and was least able to do things that mattered to me, was the one part where they were making it climb up into mid-functioning and hoping that it would continue climbing into high-functioning. Everyone was shocked when I crashed so badly that the various institutions I was being popped in and out of kept me away from home for about eight months at that point, because I was just no longer able to sustain the appearance of “improvement” and was doing everything I could to self-destruct. I wasn’t surprised at all and was shocked years later when I found the chart that was so completely backwards.

Anyway, a lot of my self-destructive tendencies at the time really did center around the fact that if I continued to be who I was, or “get worse” as things seemed to be going, then I both wouldn’t be a “good enough” person to be allowed to live (and a lot of bullies were actually telling me that Hitler had the right idea sterilizing mental defectives like me, so I had help feeling that way), and that I would be somehow a burden to my family, who were losing a whole lot of money to the insurance companies. (I was taken along to a lot of their financial appointments and had to sit there and wait while they went away to discuss ways to pay the medical bills.) My family never conveyed the idea that I was a burden, but I picked it up from society and filled in the blanks. And I knew that all of their efforts that they were having professionals put into me, to make me “more functional” and possibly even “cured”, I knew that that would never happen and felt incredibly guilty. (I really had no way to say anything like that. My communication skills were stuck on “express whatever symptoms anyone tells you you have, based on what you’ve heard from others”, and could not actually express my real thoughts except occasionally.)

I continue to be really pissed off that I was only given two options. That sort of thing can drive a lot of people to suicide, when they realize they’re never going to “get better” so that option is closed, and the other options are all institutions. And the idea that we’re only partially (if at all) truly human, or truly ourselves, or that we just suck up energy and money from everyone else, etc. That stuff is poison.