What instances of the “Story, story, story WHAP!” thing bug you the most at the moment?

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(If you don’t know what I’m talking about, I’m referring to an earlier post called Story, Story, Story, WHAP!. I’m not suggesting that the title of the post become a long-standing name for the phenomenon.)

So for me at the moment it’s any of the many different ways of saying:

“I have this [insert relative here], sort of. But we only visit her [insert ridiculously small amount of time], because she’s got [insert diagnosis here] and she naturally [without us even questioning whether this is okay or necessary] lives in [insert type of institution here].” Bonus points if they don’t treat her even remotely like a part of the family except when they want to make the character in question look sympathetic or like they have a “tragic past”. Extra bonus points if the person has never even met or made the smallest of token efforts to meet their relative but still want to angst about this person’s existence on the planet as far as I can tell. (While never, not even once, thinking of how their relative herself might feel, about any of that, because we don’t have feelings or reactions to not being treated remotely like part of our families.)

I’m not talking about instances where the person is institutionalized for reasons beyond the character’s control, the character has tried to do something about it, and is actively prevented from seeing them for more reasons beyond their control. Like in Lest We Forget (a sort of documentary-on-CD put together by the brother of one of the former inmates of an institution being covered by the documentary), the only times the guy annoyed me more than slightly were for… other things.

It’s more when it’s “This person is barely a part of the family and that’s because that’s how these things work, period, end of story, and this is only ever brought up to manipulate the audience, and the injustice of the situation is never questioned whatsoever.” Or when it becomes all about that one person’s suffering with no comprehension at all that whatever they’re suffering, it’s nothing even close to what their disabled family member is suffering by being in that situation. Or other things along those lines.

That’s not the only thing that pisses me off on sight, but it’s the one that I’ve run into more than once recently, so it’s what I remember right now.

What sort of things (please read the original post so you know what I mean) affect any of you this way? I’ll probably throw more in, in comments, as I remember or run into them.

Edit to add: I’m less concerned with what specific books/movies/etc. people have seen these in, and more interested in what they’re actually doing that provokes this reaction. Although of course people can reply however they want, I just thought there might be some misunderstanding.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

22 responses »

  1. there was some stuff like that in Brad Warner’s HARDCORE ZEN and following books, the first of which made me so mad i literally whapped the book with my fist repeatedly. in the middle of a friggin zen book, no less. oh, it was about the developmentally disabled folks he used to work with (and admittedly was lousy at it) this one time that he had a job as an aide, and about his own little nephew(?) who is autistic.

  2. If you could possibly compile a list (along with other commenters here) of books who have the “story story story WHAP thing going on……….that would be wonderful.

    We don’t trust Ivan, or ourselves, not to do something crazy if we read stuff like that. ‘

    Sorry I don’t have any insight…….though I would say, not knowing a whole lot about the phenomenon, that the one thing that really bugs me about it is the mere fact that it exists at all.

  3. I guess those who would purport to help autistics who say because they have no “theory of mind” or “empathy” as defined by the researcher, and who write books entitled ” The Science of Evil” and then deny they called autistics evil,…well,it’s not really story, story, story, WHAP…it’s more like SLAP, SLAP, SLAP, I love you. Like an abusive spouse. Except, I want to see the SOB who called my son evil in jail, just as my .husband would be if he abused me. AND I would not go back. EVER.

    Sorry, but I feel better now.

    The poster, “Now what did I do with that theory of mind?” from autistics.org keeps coming back to me. I’m a little slow.

  4. Sorry, off on my own goosechase.

    It should be required that you truly love a person before you use them to prove a point or make yourself look open-minded when you really aren’t. I guess the authors that bother you really have never put themselves in their characters shoes.

  5. I think… I’ll try to come up with a list of examples I’ve seen in fiction. It’s hard to think about it in a detached way at this point in my life, though, because we’ve spent the past few months of our life dealing with an up-close real version of that. Where we got in touch with a person in our family whom everyone else treats as person with insert diagnosis and we only visit her X number of times a year and it’s so tragic that there’s no cure for what she has and she’ll never be a normal person, also it’s such a bother for us that she constantly tries to go off and be independent when she clearly has no judgement and doesn’t know what’s best for her so we always have to pull her back and manipulate her doctors into doing what we want and keeping her helpless. It’s been… difficult, because every single other member of the family, seriously, believes in this view of her, everyone except for us, and we have to pretend we share their view when we talk to the rest of them sometimes, or just smile and nod so they won’t give us a lot of shit.

    Oh, wait: One example in fiction that comes to me is the movie “Precious.” We never saw it, but we remember Dave Hingsburger and a few other people mentioning how a disabled character was treated in the movie. Most of the complaints we read about the movie were about the really tired racist trope of the ignorant illiterate poor black kid being saved by the wonderful selfless white teacher/social worker/etc. And while it was definitely appropriate to call out the racism, a lot fewer people seemed to notice how the disabled character was treated. Basically, the main character of the film has a daughter with Down syndrome, who was conceived when her father raped her, and she’s just treated as this… tragic dark secret who is a complete non-character. She just exists to be a walking tragedy plot device, from the way it was described, and isn’t treated as a person with her own experiences and traumas and fears at all.

    • I read the book and spent a long time waiting for them to do something with that child. Because her mother, Precious, was a child who’d missed out on a lot of education, performed poorly in school, was written off by a lot of people as not worth trying to educate, and eventually able to make a better life for herself after people took an interest in teaching her and giving her a decent environment and really helping her. And Precious wanted to be a good mother, and worked quite hard to give her son a decent childhood. Then there was Precious’s daughter who had spent her early years being largely neglected, missed out on some potentially helpful early childhood education, was written off by a lot of people as not worth trying to educate and…shoved into an institution, end of story.

  6. I just edited the main post to add: ” I’m less concerned with what specific books/movies/etc. people have seen these in, and more interested in what they’re actually doing that provokes this reaction. Although of course people can reply however they want, I just thought there might be some misunderstanding.”

    (Personally, I’m not generally going to be naming books, movies, etc., because it’s easier for me to just talk about what happened without having to deal with the possibility of people defending its use in one particular story or something.)

    And S has a good point in that these things carry over into real life too. I can’t describe the level of… sort of internal violence I experience when people actually talk about real living people in that way. I grew up with a neighbor who got MS and suddenly everyone talked about her like that. If she hasn’t died (and she was becoming rather suicidal for awhile, so it’s possible — not that anyone understood this probably had more to do with the fact she was abandoned in that place than the fact that she was disabled, nor did anyone think it was possible for her to get services outside of there), she’s likely still in the institution they threw her in. I remember newspaper articles about how “brave” her children were for “dealing with” this… and I just felt sick inside, like something was terribly wrong with what was happening and how it was being discussed, but I couldn’t explain or even express that to anyone at the time. I don’t think anyone even noticed I was upset by it until I was in my twenties. And it happened when I was like… 8ish.

    (That also shaped my view of what happens when people notice you’re disabled, which eventually along with other things led me to believe I’d live in an institution of some form for the rest of my life once someone “caught” me. It (I mean permanent institutionalization, rather than the temporary form I experienced) almost happened, but with various combinations of luck and privilege I got away before they could make me a ward of the court.)

    I just ran into something in a story, that affected me in a much milder way than that last scenario I wrote about. But it still affected me badly. I was reading a book where from the start the character was an amputee. And then the story (which was amazingly good) started from before this happened and led up to the point when it did. And I was pretty happy to be able to read a story where a character was just an ordinary disabled person… until I got to the stuff after the last chapter. And found quotes by the author and various commentators, describing how the loss of a limb was a symbol of the loss of something in her mind, soul, identity, or something like that (don’t really know how to describe it, and don’t have the book handy).

    And… I hadn’t fully realized until then (even though I’d heard of it plenty, without fully connecting it to concrete reality) that people could make a person disabled in a story just to symbolize something entirely unrelated. I now remember hearing someone tell me about a disabled woman who was in a writing class, and tended to make her characters disabled. Others in the class (including the teacher) kept asking her what disability “symbolized” in her work, and refused to believe her when she said they just happened to be disabled with no particular symbolism involved. It also weirds me out because it’s not like in real life people become disabled out of some kind of symbolic significance. (Although I’ve seen people described as symbols because of being disabled before… even found a note by a family member once that described me as symbolic of the fragility within everyone, or something strange like that. I read it before I realized it probably wasn’t meant for me to read, and it really weirded me out.) And somehow it feels like rather than adding depth to the story, it takes depth out of the story, changing a three-dimensional lived reality into a two-dimensional hollow shell meant to be filled by something else entirely.

    • “And found quotes by the author and various commentators, describing how the loss of a limb was a symbol of the loss of something in her mind, soul, identity, or something like that (don’t really know how to describe it, and don’t have the book handy).

      And… I hadn’t fully realized until then (even though I’d heard of it plenty, without fully connecting it to concrete reality) that people could make a person disabled in a story just to symbolize something entirely unrelated.”

      I, too, have read fiction in which disability was meant to “symbolize” something else. And it really annoys me because usually the concept or experience that disability is meant to symbolize says a heck of a lot more about how NON-DISABLED people PERCEIVE disability and people with disabilities ourselves (usually in a very insultingly negative way) than it does about the concepts that people THINK it’s supposed to symbolize.

      For example, I read a fantasy story once about a girl who could fly. She was confined to an institution because of it, and tortured among other things to teach her that she shouldn’t fly (and also because she was fomenting the seeds of rebellion among the other children at the institution, who were there because of various magical abilities). When it was over, she not only couldn’t fly but also could no longer walk well and was depicted as being basically spiritually “empty” and “broken.” Then later in the book, she recovers her spirit, her ability to fly, and her ability to walk pretty much simultaneously. It was so obvious that her acquiring a mobility impairment was meant to symbolize her “broken” spirit (“broken” body = “broken spirit” … get it? ARRGGH!). I basically wanted to scream and throw the book across the room when I realized what the author was doing.

      I resent the idea that something that happens to be part of who I am is somehow supposed to represent a “broken spirit” to people who aren’t me. Because I’m NOT BROKEN. Not physically, not in my ears, and certainly NOT in my spirit.

  7. Wow. Yeah. That’s exactly it. The fact that whatever they make us symbolize, is based on what they think disability must be like, rather than what it is like once you toss off most of the cultural baggage.

    I even heard once that in Rain Man, Raymond was there to symbolize his brother’s inability to relate to people, by making Raymond autistic. WTF.

    • I didn’t realize that about Raymond in Rain Man, though I suppose it shouldn’t surprise me.

      This reminds me of another example: the deaf man in the “Heart is a Lonely Hunter” … the whole novel is basically about people who are lonely for various reasons. And all of them “confide in” the deaf man while knowing he cannot understand them, “telling” him various personal things that they don’t tell to hearing people who would actually understand them. The deaf man I think is basically meant to symbolize the loneliness of everyone else in the novel, as well as also being himself lonely–he has only one real friend who is an institutionalized signing deaf man with an intellectual disability who he cannot see very often.

      So basically, the author apparently thought (past tense because I’m fairly sure she has died by now, this was published decades ago) that being deaf means being basically isolated. And yes that can sometimes be true part of the time, but many deaf people are plugged into a thriving network of Deaf people and a cultural/linguistic community: if she had actually bothered to meet any Deaf people and get to know them, she would have realized that deafness was not really such a suitable “symbol” of isolation or loneliness after all.

      Irongically, I read once that there was apparently a huge meeting of the National Association of the Deaf in her own town at around the time she was writing the novel. And she KNEW about it. And didn’t bother to go because she felt she already knew what she wanted to do with the deaf characther. ARGH. I wish I could find the citation for this now.

      Not on the same level of annoyance, but the same deaf character worked as a jeweler–assessing the value of jewels etc. I suppose meant to reinforce the image of him as an isolated person (since he would mostly be working alone). But he supposedly learned how to do this at the deaf school he attended. And this was simply NOT the kind of occupation that was taught to boys at deaf schools in those days. More common were things like woodworking, tailoring, and printing. So that was jarring because it simply didn’t make sense from a historical perspective. (For deaf girls, it was basically dressmaking, and home ec, because “of course” deaf girls weren’t going to be employed, at least not once they got married ….)

  8. Well, upon further reflection I concede that making the effort to compile a list of such writings would cause more problems than it would solve……although, IIRC you posted something else in which you turned off comments for a reason similar to what you mentioned here……that could be one way around it.

    I was thinking of that idea more for alerting people who could be triggered by reading such things…..if they didn’t know beforehand that a particular book or story has this particular troubling phenomenon going on…….

    Going completely off on a tangent here……since you mention luck and priviledge as things that contributed to keeping you out of permanent institutionalization……..

    How can we help those who don’t have such good fortune?

    One more thing: One of us (most likely Ivan……) is partcipating in an Occupy Wall Street type protest in southern CT on Saturday……..nowadays, people can be arrested even for peaceful assembly if the cops don’t like them……so……..here’s hoping we don’t get arrested.

    We’re willing to risk that to register our objection to corporate malfeasance……..

    I also hope that all the crap going on in this country doesn’t trigger Civil War 2…….

  9. Another fictional example I remembered but one which ties into too-real attitudes in this society (attitudes we have had personal contact with from both sides): Jodi Picoult’s books and how she treats disabled characters in them. Not specifically about institutionalization but about disability in general. I don’t have it at hand, but I read an interview with her once where she said that she wrote about what she thought were the worst things that could happen to families, to “calm her own fears.” In principle, as a writer myself, I can understand writing as deliberate catharsis under some circumstances. However, it seems like every time there’s a disabled character in Picoult’s books, they’re basically treated as if their existence itself is the big, horrible tragedy which came along to ruin the otherwise happy “normal” life that the otherwise “normal” family would ostensibly have been entitled to. There was a series of posts on Cat in a Dog’s World about “House Rules,” her absolutely awful treatment of an autistic character, and… well it ended up in discussion about how disabled characters in some of her other books were treated, like “Handle with Care,” which has a character with osteogenesis imperfecta in it. And it was handled every bit as badly, if not worse, than the autistic character in “House Rules.” And… well I’ll just copy and paste what I said there because it expresses my views on this a lot more clearly than I can at the moment:

    “I very frequently have problems with Hot Political Issues ™ Fiction because it’s almost inevitably written by privileged people from a privileged viewpoint, where marginalized characters just exist to act as accessories for privileged characters to navel-gaze or moralize over or Learn A Lesson, and the author is clearly seeing them as Other rather than identifying with them, even when attempting to write from their perspective. And when disability is involved, non-disabled characters are almost guaranteed to do a lot of self-pitying and navel-gazing about “what my life would be like if things were normal.” As if the standard of “normal” they’re using isn’t one that’s only sprung up in the past sixty years or so among affluent and socially privileged people and isn’t even possible for a technical majority of people. Needless to say, my sympathy as a reader is not going to go with them.”

    “apparently she believes, by some kind of magical thinking, that if she writes books about what she thinks are the worst things imaginable that could happen to families and their children, they somehow won’t happen to her family. Or they remind her how “grateful” she is that they haven’t happened to her, or something, which strikes me as an amazingly selfish reason to write, no matter how many people enjoy her books.

    And one of the stereotypes that she seems to hash out repeatedly, that she’s playing to the utter extreme here, that she was also playing blatantly in “Handle with Care,” is the idea of disabled people as these life-sucking vortexes who destroy the “happy, normal” lives the non-disabled people around them would otherwise have had, by consuming everyone’s time and energy.

    All right, trying to be charitable, I’ll give her that what she intended in some cases was some message about the tragedy of the American health care system and the lack of services families with disabled children run up against. Apparently she was trying to present the actions of the mother in “Handle with Care” as morally ambiguous because she lied about considering her daughter’s life not worth living, or something, just because she wanted to win a lawsuit that would give her money for health care. However, I regard that as an extremely dangerous attitude to present, even if it’s “just fiction,” given that caregivers who claim their murders of disabled children were “mercy killings,” because their children’s lives could not possibly be worth living, generally get off with a slap on the wrist and earn lots of public sympathy. It’s far too easy for people to miss any intended “moral ambiguity” when that idea is so entrenched both in general society and the medical system. And having the daughter commit suicide at the end of the book was… well, I suspect a lot of people would take exactly that message from it. That even if it was sad, she was better off dead anyway, or something.

    The whole “disabled person as life-destroying monster” is one of the most odious ones there is. It’s fundamentally a terrifying attitude because it suggests we’re “useless eaters,” that we just take and take and suck up other people’s time and resources and give nothing in return, and that maybe it isn’t so outrageous to believe we’re better off not being born. That we ruin the otherwise happy lives of “normal” people with our endless needs, nevermind that this supposed “normalcy” isn’t available to the vast majority of people in the world. (…) That kind of attitude is the very sort of thing that can drive people to suicide, to deciding their life isn’t worth it, that they’ll only be taking the “burden” of their life away from family and caregivers.”

    (…and for what it’s worth, although our disabilities aren’t of the kind that generally get labeled severe, we have definitely felt before– mostly in high school– that we should commit suicide because we were a burden to everybody, because no matter how much “help” people poured into us it didn’t seem to “improve” us, that we should just remove the burden of our life from the world because we were a useless waste of resources and shamed our family and let someone more “deserving” have them. We no longer believe that nowadays, definitely not, but we remember very vividly the time when we did.)

  10. Oh geez, yeah.

    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.

    • 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.

  11. There’s a lot more detail to what happened that I didn’t put into that post. But some of it resembles what you told me.

    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.

  12. Whoa………slow down………first a whole new blog, then a video? I know, I know……….they’re important projects. I believe that completely.

    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……

  13. That makes sense. I had the comparatively harmless label as someone with “social anxiety” and I had to morph how I talked and thought about my experiences to fit into that, even though people with actual social anxiety mostly have different problems than I do. Some of the people did think that I might be schizophrenic but I wasn’t supposed to know about that. (there was one thwarted attempt to trick me into taking thorazine) And I think I was in one of the “good institutions,” insofar as there can actually be good ones, although they would threaten to send us to worse places if we didn’t do what they wanted.

    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.

  14. When they have mercy-killing. It seems to happen often in speculative fiction, and it’s often frightening how quickly they decide it’s necessary.

    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).

  15. Oh yes, the “mind is gone” stuff. I’d been meaning to write about that for my new blog — I recently read a science fiction novel by an author who is usually one of my favorites — someone who can see even buildings and air as “alive”, but who in this case wrote a book whose entire premise was that there was something “eating minds” out of people. And this was explicitly connected by one of the doctors in the book, to working with people with developmental disabilities (and her descriptions obviously included autism) in institutions (in a future that ought not have had institutions at all, given the series this was taking place in) who “clearly had no mind” and no capacity for enjoying life or anything else, and who made this doctor-in-training (as she was at the time it happened) really flip out about it for weeks or months afterwards when nothing else she’d ever seen in training had fazed her at all even if other medical students had had serious problems with it. It was that awful. It was really awful. Everyone in this series wanted to kill the people whose minds were removed, but did in the end not do it and sent them somewhere where they could be cared for. I really didn’t like the way they wrote it either… because it was like… there’s this thing I’ve seen in books where authors will write a thing to be a certain way when it could never happen that way in life, but their prejudices say it is that way, and therefore they write it in a way where of course things work as if it was true because it’s written that way. And then readers with at least part of that prejudice believe it without ever questioning whether something like that could ever happen in real life. (Fortunately even most fans of the author seem to hate that book, but not because of the prejudices in it — more because of the plot apparently being really bad. I’m not good at evaluating plots that way so I’m glad it was also badly written in addition to being badly conceived of. Unfortunately, given the author’s job before she became an author, I have this horrible feeling that the experiences she drew from to create that doctor were either her own or those of people she’d talked to in that profession.)

    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.

  16. I had something kind of like a “Story story story WHAP!” moment watching John Carpenter’s film Halloween. It didn’t happen suddenly, but took a while for me to realize what the movie was doing.

    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.

  17. I just read a fictional story in one of my college’s local journals where a very sick, diseased baby was born to an older couple. The parents loved him and wanted to keep him alive as long as possible, but the doctor in charge of his care evidently considered the child a morally taxing waste of life. When the mom asks if the drugs her baby has to be given will “mess up his poor little brain,” the doctor thinks to himself that screwing around with the brain doesn’t matter as its owner won’t live long enough to be tested for difficulties in his “mentation.”

    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.

  18. I was re-reading this thread and remembered another “whap” moment I got from a book I read ages ago (probably in the early 90s when I read it, though I’m not sure when it was actually published). It was in some futuristic sci-fi setting. A pair of evil bad guys somehow obtain a four-year-old girl who had one torso but two pairs of legs and two sets of genitalia (I guess supposed to be a set of conjoined twins but completely joined from about the chest up) so they could rape and molest her. The hero of the story discovers the girl afterward and kills her. It was clear from the way the scene was written that this was supposed to be interpreted as a clear case of “mercy killing”–in other words, that killing the girl was supposed to be a GOOD and merciful thing. The reader was supposed to assume that her life was simply too horrific for the girl to derive any value from continuing to live: I think we are supposed to assume this both due to the fact that her body is obviously different from most other bodies and also due to the fact that she has experienced a very traumatic event. I was really horrified and disgusted by the scene and angry with the author for not showing a better understanding of the true resilience of most humans. As well as being insulting to people with disabilities AND to people who have experienced traumatic events, including people whose early lives were pretty much filled with unremitting trauma.

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