This stuff isn’t just about autism.

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Another response I saw to the video I did was from a person with brain damage. They said that the part I said about learning other people’s language was very true — that in rehab, for instance, therapists would say “Use your words or people won’t care what you’re thinking,” etc. (And here I thought “use your words” was an obnoxiousness reserved for special ed.) In fact they were so stunned by the reality of the thing, from when they were newly injured, that it took them a long time to even formulate a response.

I write about stuff from the perspective of an autistic person, because that’s part of what I am (I’m also a lot of other things, including probably brain damaged). But when I write about the experience of not being a “person” until I learn a foreign language, I’m not writing to give insight into autism specifically. I’m writing because that’s true even in accepted languages, that people are more “people” when they speak the dominant language, or the dominant dialect. I’m writing because that’s true of people with brain damage, people with Alzheimer’s, people with intellectual disabilities, people whose bodies don’t let them form speech easily even if their cognition is totally standard, people considered crazy (in all the various ultra-sophisticated medicalizations of that basic concept), etc, and I see it all the time.

A lot of the time I think I get pigeonholed as doing “autism writing” because that’s the specific circumstance I write about, but I’m almost always writing about something broader than that, some set of circumstances that applies to a wide variety of people. The point of what I wrote was not my own struggle (whatever people imagine that struggle to be) to communicate with people, but the bias behind what is considered communication.

A bias so strong that someone I used to know who was training to be a speech pathologist marveled at the fact that she received no actual training on augmentative communication techniques in school — that training was optional, and out of her own pocket, because speech was worshipped so highly. And that I have known a number of people whose communication goes totally ignored — even their very clear verbal communication at times — because it doesn’t fit a preconceived idea of what communication is. And then people routinely judge the personhood of any given person in question, based on what that person is and is not said to be able to communicate, which is another giant leap of assumption.

These are assumptions which leave people lonely, isolated, and trapped, at best — not by some internal condition but by what others do and don’t do based on those assumptions. At worst, they’re used to justify things like torture and murder, or at least to make them seem less heinous. Some people have asked exactly what I was referring to in that regard.

From the Miami Herald:

Circuit Judge Clayton Simmons made the ruling at a pretrial hearing Thursday in the case against Kathleen Garrett. Trial is expected to begin next week against the 26-year veteran of Seminole County public schools charged with physically abusing the students, who ranged in age from 12 to 15.

Garrett was arrested in November 2004 on charges that she abused autistic students in her class at South Seminole Middle School in Casselberry, even chipping one boy’s teeth by slamming his face into a desk.

Other allegations include beating children, humiliating them, pushing one’s face into vomit and disciplining some behind closed bathroom doors, where screaming and sounds of furniture banging around could be heard.

Defense attorney Thomas Egan argued that it is vital for jurors to see the kind of students Garrett supervised.

“One of these kids actually eats his feces,” Egan said. “I think the world will see volumes when they see these children.”

In this case, the fact that a kid eats his own feces is supposed to somehow justify the abuse that happened to him and the other students. Less of a person. (Many newspaper stories about autism, even ones that don’t stress what some autistic people do to feces, still stress our connection to it, which I am beginning to believe has something to do with people’s attitude about what they think we are, not just what we do.)

Things like that go on in nursing homes all the time, too, but older people are considered even less people than autistic people are (especially when the autistic people in question are, as often stereotyped, children), at times, so even fewer people hear about that kind of thing unless they have the misfortune to live in one of those places.

If you want more systematic and conventional torture of children considered to have a wide variety of labels, look no further than the Judge Rotenberg Center. (Or the guy who used to whack me on the knee harder and harder until I looked at him. He later justified his behavior by saying that he was saving me from a life of institutionalization.)

When I talk about people dying, I’m serious as well. My friend Joel has amassed quite a bit of information on the murder of autistic people, and we’re far from the only ones targeted (or seen as less worthy of saving) once we reach non-person status. Read When I Woke Up by Rus Cooper-Dowda for an account of a near-miss in that situation. Tracy Latimer‘s father gassed her to death and tried to justify it because she had severe cerebral palsy, after which such murders actually increased.

But even those who are not being tortured or dying, are still usually subject to a large amount of day-to-day degradation and denial of their existence as people (not even as “good people”, but as people at all). If all I had to write about were some sort of extremely stereotyped story of autistic people “overcoming the odds,” I doubt I’d write much at all.

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.

33 responses »

  1. have mentioned this before, but: all kinds of parallels between disabled people’s stuggles to be considered as fully people and to have ‘life, liberty and pursuit of happiness’ and all that good stuff, and immigrants’ struggles for those same things. i guess it’s accurate to say that some “marginalized” people’s experiences can be somewhat generalized to relate to all.

  2. I’m still stuck on the ‘use your words’ mantra that I’ve been uttering for years to both of my boys, wondering why I’ve been doing this? I think it’s primarily for my benefit in that it’s easier for me to understand them if they use my language – words. Additionally, up until their diagnoses although I understood the majority of their gestures which they used instead of words, not many other people did. There were lots of other clues, so when I was really well tuned in [or as well as I was able to tune in] I could anticipate what they wanted before they started to mime or gesture. Back in those non verbal days I would worry about when I wasn’t there, what then? No-one else would understand them. I still don’t know how you get the balance right.
    Cheers

  3. I am longing for the day that some social psychologist investigates these sort of events and happenings.

    Maybe then, when the prejudiced viewpoints inherent in clinical and forensic psychology can be by-passed, we can get to see what it really is that drives such injustices.

  4. I don’t see anything wrong with learning a “second language”, as it were, unless the person finds it utterly impossible or something. I do see something wrong with devaluing the “first language” in the process.

  5. Ignorance plays a large part in people who aren’t aware of autism (apart from having heard of it) making erroneous assumptions about it. Unfortuantely this then leads to some people automatically assuming that it is so terrible that people are justified in using it as an excuse when killing. On the (sort of) flip side, a programme in the UK called CrimeWatch caused outrage when the psychological profiler declared an assailant to be probably Aspergers. When challenged about the absurdity on making an assumption based on such scanty knowledge as was available the programme makers defended themselves by saying they used it as a descriptive term in the same way as someone would be described as wearing glasses. People on the autistic spectrum seem to be placed into three categories. Firstly there is the “awww, poor thing, bless them” role. Then there is the “they’ll murder us if we so much as look at them”. And then there’s the “oh, they’re talking, they’re not really autistic”. Obviously (and thankfully) not everybody holds those views but unfortunately there are still those who do and it’s very annoying.
    With regards to communication, one of the reasons I am happy for my son to attend the special nursery that he goes to is because they place a lot of emphasis on all aspects of communication and a lot less on speech alone.

  6. i read something once that said “people hate what they fear. people fear what they don’t understand.” of course it’s not that simple. sometimes a person gets hated for precisely what/who they really are. but sometimes that quote is true.

  7. In this case, “eats his own feces,” even if it’s true is being used as a slur. “Well of course she slapped him he’s a (insert racial epithet here).” “Who wouldn’t want to smash the face of a ______ into a desk.”

    One thing I learned from you Ballastexistenz is how common htis stuff is. I really didn’t know. I hovered over my disabled child so often that it would have been hard to abuse him/her at school, when kids teased him/her, if I found out about it I’d be all over them like their worst nightmare, threatening whatever I thought would work to make them never do it again. Actually, I did the same with my NT kid, no one bullied my kids and got away with it if I could possibly do something about it. I took my NT kid out of school because of his/her being bullied.

    If a teacher had terrorized my child the way that teacher did in Florida, I’d have gone crazy. I’d have been full of so much rage. I had enough rage at some of my kids teachers when they got to junior high, for much less extreme abuses.

    I’m thinking aobut how I’m going to take care of my mom who is getting towards not being able to care for herself. Your comment about convalescent homes is sobering, too. We are all heading toward old age and ultra-vulnerability.

  8. “highly. And that I have known a number of people whose communication goes totally ignored — even their very clear verbal communication at times — because it doesn’t fit a preconceived idea of what communication is”

    I read this all the time in reports on kids coming into my class. They have no language. They have no communication skills. I communicate very well with an elective mute child who declines to talk to me. Then there is the lad who could not talk even if he wanted to. He can barely move at all. We still communicate. I talk. He responds with body language and facial expressions. I modulate my talking according to how he responds.
    Once in a bar in Greece I communicated very well with a Greek man who spoke no English. I spoke even less Greek! But we both acknowledged the other’s communicative intent and made the effort. I think some people would rather not have to communicate with those they consider less than human. But it is they who are lacking in humanity.

  9. Defense attorney Thomas Egan argued that it is vital for jurors to see the kind of students Garrett supervised.

    “One of these kids actually eats his feces,” Egan said. “I think the world will see volumes when they see these children.”

    I thought I felt sick BEFORE I read that.
    I’m sitting here trying to work out how eating one’s feces justifies physical abuse. So far I can’t think of any reason, and I don’t believe that any reasonable person would.

  10. Well, the second part of your post (on abuse) is something that SHOULD be clear to everyone and I have nothing to respond to it (other than the disgust that builds in my gut at being reminded of the horrible things people are capable of and then have the further depravity to actually try to excuse or rationalize.)

    I wanted more to respond more to the first part of the post (on communication/language).

    “And that I have known a number of people whose communication goes totally ignored — even their very clear verbal communication at times — because it doesn’t fit a preconceived idea of what communication is.”

    First, I want to say that I found your video to be truly beautiful.

    Second, although I see the issue with “use your words” – when those words are not in a person’s 1st language, I don’t think it’s a wrong request. I mean any knowledge that someone has, they have ownership of. Although motions, song, etc are communication – they are not words. The request to “use your words” – is simply a request for “you” to go rummaging in your head for the words which you have in there somewhere and to use those instead of whatever medium you are currently trying to use. Perhaps, if you want to be semantic, it would be best to say “use your English words”.

    What is communication anyway? I looked up online and I found a number of definitions (one of which was slightly disturbing: http://www-lmmb.ncifcrf.gov/~toms/glossary.html – it deefines communication as being information that is, by definition, not received the same as it was sent ). The one that I thought was actually best was actually (not coincidentally as I don’t believe in coincidence) written by the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities (1992, p. 2)

    Communication:
    “Any act by which one person gives to or receives from another person information about that person’s needs, desires, perceptions, knowledge, or affective states. Communication may be intentional or unintentional, may involve conventional or unconventional signals, may take linguistic or nonlinguistic forms, and may occur through spoken or other modes.”

    One obvious fault of this definition in the context of your video is that it limits itself to communication between people (as opposed to with water, light, cats, blocks, books, etc. – also, not including communicating with Gd for that matter.) However, in this definition I also see that they consider communication if it is SENT and/OR received. This supports your saying that people whose communications go misunderstood/ignored are not failing to communicate – that the failure is actually on the side of the recipient.

    However, I’m not sure I agree with that. I guess I have to think about it more. I actually (honestly) consider thinking to be a fairly painful process that is very destabilizing for me, so I’m not sure Ill finish this post. I’m not sure I actually communicated anything I wanted to say anyway so maybe I’m in the same boat.

    Thank you so much for all your writing, it is truly a gift. Even though I don’t think I agree with all of it.

  11. Thank you. I cannot tell you how much this site means to me. I am not autistic, rather I am someone who society calls “normal.” I have an autistic sister however, who I seem to connect well with, and I work with adults with varying degrees of cognitive delays. Watching your video made me realize that how I view my residents at work is indeed a way that helps me communicate with them. It also made me realize that I could do better. I’ve never seen my sister type on a computer before, but I know she knows how to use one. Seeing this, makes me realize how much she could be able to tell us in our language that I don’t quite understand in hers. And I hope to keep learning hers. Just.. Thank you.

  12. I’m a social worker, and a parent of a child with (I suppose relatively mild) brain damage, and from a family of borderline autistics for that matter.

    I loved your video, and love your blog and website, and generally speaking, agree with the empowerment movement and support your activism. But in this post you cite the Latimer case uncritically, and that bothers me. The Latimer case is deeply troubling, tragic in itself to be sure, but particularly in all the ugliness it has stirred up, from almost every perspective.

    No-one has ever adduced any evidence that he killed Tracy because she was too much of a bother, or because he thought her less than human. He claimed that he could no longer bear her suffering, that she was in immense and unending pain, and that killing her was a kindness, that the “treatment” the medical establishment was insisting on was hideous and cruel (and shades of Ashley X), and I suppose that his action was akin to the kind of thing you find on a battlefield. He may well have been deeply wrong on all of this, there may well have been other options, and so on. But no-one has ever claimed that he is lieing when he claims to have acted out of compassion, in what he perceived as an impossible situation.

    I don’t know the circumstances, I don’t know the realities, but I do know that sending a man who was at worst stupid and misguided to jail for 10 years is every bit as wrong as sending someone with mental health problems to jail for things that they cannot control. We do that all the time too. The levels of bile and hatred this case has aroused have deeply troubled me, sadness and compassion and pity would be more in order I think, for Tracy, and for Robert, and for the rest of their family, who have suffered greviously.

    But perhaps not for the doctors, who should have been put on trial, but of course never were.

  13. When I Woke Up, reminds me of a book that was made into a film, called Johnny Got His Gun. It’s about a soldier named Joe, who was hit by a nuclear bomb. He was paralyzed completely, the story was told through his mind, since he could no longer speak.

    At the end of the film, Joe asks to die. There was a scene from this used in Metallica’s music video for One, the song which was based on the film. They show the part where he’s nodding his head in morse code, saying “S.O.S I want to die”. The doctors at first assume it’s meaningless activity, or like a seizure. The nurse feels terrible though, and understands him. So she tries to help him to the other side.

    The army sergent comes in, and tells her not to help him. If he were to die, it would be let out that the army had done this to him. The idea, was that he was less of a person, or he had sold off his personhood in becoming a soldier. The book and film were produced close to Vietnam, which I belive the film was a political criticism of.

    It’s very hard to find the movie, I own a copy of a VHS of it. It was a collectors edition from Amazon, and was quite a large amount of money. There’s a DVD, but I think it’s only Region 2. I belive the book is still being published.

    I know you are against helping those who are disabled die, alot of the film is about how Joe was considered less of a person, if not considered a non-person because of his injury. I think the film is more about government taking over the lives of the young men who go to war, to the extent they have no choice in living or dying.

    I found the film/story very interesting, so look up Johnny Got His Gun on Amazon if you want to know more about it.

  14. Gosh where to start…I’ve worked, mothered, fostered children for so many years. Babies start out reacting to the world, often we don’t understand them. Then we start, “use your words” we say to the toddlers. To the ones discovering their world, we guide their hands we guide their movements. We say “watch me”…”do it like this”. Then they get to school and “if you look at my eyes and sit still I will know you are listening to me”. These things we Teach (yes with a capital T) to all children. It’s wrong, these assumptions are wrong.

    With your permission I’m going to use your video at my next teacher staff training to show them what I’ve been trying to say. Thank you for Teaching me the language I needed to get this message to those who don’t understand why I, and my son sometimes need to move to think.

    Manda

  15. Rob, killing someone because you think they’d be better off dead (and this was not a battlefield he was on, and should not be confused with one) and thinking it’s love, is one of the worst and most insidious kinds of hatred directed at disabled people. I don’t like the justice system, but if we failed to hand out sentences on the basis that someone didn’t think murdering someone was wrong, then a lot of murderers would be walking free. In the past, some people who’ve done things like this “out of love” have been released only to kill “normal” people as well — and then and only then does it become a problem. Tracy Latimer’s dehumanization in the eyes of the public did make an impact on the outcome of the case, and “better off dead” really is a form of dehumanization no matter what warm fuzzy feelings (which people call “love” but are not love, and which they might also call “pity” which is nearer the mark) go with it. Pity can kill people, just like self-pity can lead to suicide.

    I’m already a member of a category of people who are often considered better off dead and without our tragic suffering continued. This has been borne out in the public responses to parents murdering their own autistic children, supposedly for these reasons. How safe do you think it makes me and all other autistic people, when these murders are taken less seriously because they’re supposedly motivated by love? It means presumably anyone could walk into my house and shoot me and if they spun a good enough story about love or the burden of having to care for someone like me, they might well walk free.

    I’m bringing this back to me so that you can see it affects a real person you might talk to at some point, rather than a series of abstractions. In February of 1996, a bunch of people did in fact try to kill me. They might have gotten away with it if they’d succeeded, they were all fine upstanding healthcare professionals, after all. I often wonder who they did get away with killing, because I can’t imagine I was their first. But it’s because of things like that that I can’t sit around and go “Oh poor thing his motivations were good when he killed that little girl so it’s utterly barbaric to hold him to the same standards as other child-killers.”

  16. Jackie, I’m against “helping” people die in general, not just disabled people. I just lack the double standard that generally is applied to disabled people. Non-disabled people, when that seriously depressed, get something that’s supposed to help them not be that seriously depressed, and while I often disagree with how it’s done, I agree in principle with the idea that the desire for death is generally irrational. The trouble is that non-disabled people (and newly-disabled people) tend to bring their prejudices about the possibility of happiness living with a disability into the equation, so they think it’s different for us. It’s not.

  17. Looking back on my own kids, (who in retrospect are likely somewhere on the spectrum, as am I), I wonder if “use your words” would be more honestly stated “use *my* words”. As a parent, I said this to young children (ie under 6) as shorthand for something like “please stop screaming and kicking, I realize that you have a problem, and I would like to work with you to solve it, so please help me to understand what it is and how I can help”. I can see how it would be insulting to say “use your words” to adolescents or adults (though I do recall saying it as a (somewhat successfull) attempt at anger-defusing humour to one of my teenage sons when he was kicking a door as part of an argument with his brother).

    “Use your words or people won’t care what you’re thinking,” seems unnecessarily harsh and cruel.

  18. Yes, broad. Yes, wide variety of people. So, Amanda, a friend is making me a profile page on his artsy-fartsy website. The “me” stuff is mostly re: my poetry career. S’okay if I include a link to your blog in my links of interest? Thanks in advance. ; )

  19. It is totally understandable that someone who has been tortured and assaulted, and has a reasonable expectation of being so again, should have some trouble making empathetic distinctions.

    The criminal justice system however makes just those distinctions: First Degree Murder, which is deliberate murder planned ahead, for the purpose of personal gain or advantage; Second Degree Murder, which is deliberate murder for gain committed in the moment, an act of impulse; and Manslaughter, which is unintentional but blameworthy murder. It is all about intentional and motivational distinctions, and they result in rather different punishments. Robert Latimer was charged with and convicted of 1st degree murder.

    If we are engaged in a struggle for Justice, we must ourselves be Just, I think.

    I am a parent. I have had to fight the medical, educational, and child welfare systems ferociously and without end. Precisely because I have been accused by medical & educational people of lack of compassion and care, of ignorance and inability, of lack of support for their heroic efforts because I refused to punish my daughter into “compliance,” or after a while, physically and brutally force deeply debilitating and useless drugs on her, I have developed a deep resistence to being second guessed, and I extend that to other parents in the same fight.

    Blanket condemnation of people in situations that I do not fully know, and living lives I have not had to live in myself, is the cruelty that says you cannot make a revolution without breaking a few eggs.

    Robert Latimer is an exceedingly simple man, from what I have learned, and it appeared to him, I think, that he only had two choices: let the doctors continue to assault his child, or end the misery, and pay the price. It is not right to condemn him and his family to great suffering for not knowing that there might have been other choices, other ways of thinking and doing and living.

    There have been times that I have taken great pride in being a “bad” parent. And so I have great empathy and sympathy for other parents, bad or “bad” or good or “good,” and I for one am very reluctant to make that kind of distinction. It has been made about me far too often.

    I just want to mourn Tracy, AND Robert.

    Is that so bad?

  20. I think that certainly, when someone becomes a murderer, it is always to be mourned. But that does not mean they have not murdered. Most people who kill other people, whatever the situation, have firmly-believed reasons for what they do. Most will have to live with the guilt for the rest of their lives (even if, unlike Robert Latimer, they truly had no choice). But differentiating between those who kill disabled people and those who don’t, because most people find it easier to empathize with those who kill disabled people (which is itself a terrifying statement right there), doesn’t help people, it harms people.

  21. I couldn’t agree more – “This stuff” isn’t just about autism.” I am exhausted right now, but fascinated by your video and blog. The point(s) you make in that video is (are) very well taken.

  22. “Blanket condemnation of people in situations that I do not fully know, and living lives I have not had to live in myself, is the cruelty that says you cannot make a revolution without breaking a few eggs.”

    I don’t think Robert Latimer should be any more or less worthy of sympathy than any man who willfully murdered his own child. They all have reasons and stories, and something in their life that twisted and pushed them in a tragic way. But I think we need to clearly condemn the act.

    It’s very much like honor killings. Men who have very specific, culturally endorsed ideas of who their daughters should be, and what the father’s role is in seeing this happen, find themselves in a situation of no apparent hope. I’m sure there’s many men in Jordan (for example) who find the prospect of their daughters dying quickly and quietly far more merciful than life with no prospect of decent marriage and a ruined reputation. And there’s a time and place for sympathising with men like that, to better understand what motivates them and how to keep others from arriving in the same place. But writing sympathetically about the pain and suffering of men who kill their daughters for family honor is very different in Jordan than it is in the United States. So is condemning the act as murder, and asserting the girl’s right to live regardless of what other people think of her worth, or what others would find best.

    For disabled people, we’re in Jordan. Replace the word “honor” with the word “mercy”, and it fits appalingly well. Talking about how hard it was for Robert Latimer, and how cruel it would be to make him suffer isn’t just a plea for mercy. It’s a message to everyone out there who’s thinking of killing their disabled child. It’s telling them their urges are understandable and reasonable, and not wrong in the way wanting to kill children is wrong. It’s telling them that if they kill their child, people will be lining up to sympathize, that their circumstances are so much worse than that of every other parent that they deserve leniency for murder. It’s telling them they’re justified in deciding that their child’s better off dead. And these aren’t attitudes you want to reinforce in someone who might be standing over a sleeping child deciding wheither to put a pillow over her face.

  23. One of the things I’m really liking reading your blog is this idea that communication shouldn’t have to be one thing. Even in my psychotic episode, when people thought I wasn’t there (which is a weird thought because I was always very in my body) it seemed mainly because I wasn’t communicating in a manner that was normal to them. But I was saying a lot of stuff, I had created a total environment that explained what I was dealing with, I was wearing certain clothes that made me look and feel a certain way. I had objects arranged in ways that were telling stories. But to them it was just a mess, and the beautiful (and scary) things I was seeing and making were meaningless. I think that was the most frustrating thing, was being punished for thinking and communicating in a different way. Anyway, reading your blog has really inspired me to accept that there are things about me which are “unusual” but not invalid. I think anyone with a different brain can relate to pretty much everything you’re talking about here.

  24. Thirza:

    At one point, I told myself a lot of stories hoping they might be true, and a lot of other stories hoping that if I believed in them enough then I might stop realizing they weren’t true. (This was a part of the ongoing effort to disappear that used to occupy a lot of my time. Shouldn’t be confused with “telling people what I thought they wanted to hear because I thought that’s what communication was for,” though, which also happened at around the same time.)

    I found people divided often into two camps on that.

    One camp said that I honestly believed the stories I was telling myself, and that therefore I was something called psychotic, or possibly something called dissociative (they were quite divided on which). They neglected to find any particular content in the stories, or when they did, it more often fit their imaginings than anything else.

    Another camp said that I was making up the stories I was telling myself, but that I was doing this to get attention and that this could not be countenanced and that I was evil and should be dismissed at every opportunity. They neglected to see my real reasons for doing so, which had to do with a complex combination of things, and instead belittled me.

    In reality, I was trying to figure out and take my place in a human-created world that seemed to have no place for me, and few descriptions of anyone like me. I was integrating things I had read in books (particularly fairy tales), descriptions other people had of how their minds work (and therefore “how a mind should be said to work” as far as I could figure out), insistence by other people on how my mind must work, assorted psychiatrized categories of experience that only partially (when at all) fit me, and so on and so forth. And I was also desperately afraid of having no future, of seeing no place I seemed to fit, and so forth. And of wondering whether I had to mold myself to a number of different “fits” that presented themselves.

    And meanwhile I was also quite autistic, which meant that I acted in a way that certainly got interpreted through a number of different lenses but which nothing I attempted could turn off. (Meanwhile some people were noticing I was autistic and others were busy gawping at all the assorted other stuff going on.)

    So people denied a lot of things in this process. They ended up denying some combination of:
    My connection to reality.
    My understanding of what was happening around me.
    My awareness of the existence of other people
    The role of their own psychiatric system in shaping the way I acted and thought about myself
    My own agency in what was happening to me (except when I could be dismissed as “attention seeking”)
    My real motivations
    The influences of the people around me on what I was saying (this is one reason the idea of “facilitator influence” confuses me — yes, it happens in FC, but why doesn’t anyone talk about the fact that for many autistic people our vocalizations are easier to influence than our typing?)
    Etc.

    And basically everyone else got to tell my story for me, in a really bad way.

  25. “…people’s attitude about what they think we are, not just what we do [with feces].”

    The above comment from your entry just came into my head in a particularly horrifying way that I felt like I should relay back to you (as I think it *does* mean something)…

    I was writing a post on Switzerland including “mental illness” in their Euthanasia program, and went here for some fact-checking:
    http://en.wikipedia.org/wiki/T-4_Euthanasia_Program

    One of the first things my eyes fell on was this quote:

    “The idea of enforcing “racial hygiene” had been an essential element of Hitler’s ideology from its earliest days. Hitler seems to have had a lifelong horror of mental illness and physical deformity. In his discussions with Bouhler and the head of the Reich Chancellery, Hans Lammers, Hitler referred to people who “perpetually dirtied themselves” and who “put their own excrement in their mouths.””

  26. On the subject of killing disabled people:
    I don’t know about other countries, but here the murder/wounding/etc of a policeman is punished more severly than crimes against other people. Not because policemen would be more valuable as human beigns, but because due to the nature of their work they get in dangerous situations with criminals able and willing to kill more often than your common civilian. So there is a need for extra incentives to the criminals to be carefuller.

    My point is, if it is shown that disabled people are due to the biases of the society in greater risk of being hurt or murdered than an “ordinary” person (which might very well be so), then it would make sense that punishments against such crimes would be stricter too, to make at least some of the would-be murderers reconsider.

    ——————
    Also, understanding is one thing, but the idea of in any way or form offering support to the idea that some lives are simply unworthy and destroyable is disgusting.

  27. J,

    You said:

    “It’s very much like honor killings. Men who have very specific, culturally endorsed ideas of who their daughters should be, and what the father’s role is in seeing this happen, find themselves in a situation of no apparent hope. I’m sure there’s many men in Jordan (for example) who find the prospect of their daughters dying quickly and quietly far more merciful than life with no prospect of decent marriage and a ruined reputation. And there’s a time and place for sympathising with men like that, to better understand what motivates them and how to keep others from arriving in the same place. But writing sympathetically about the pain and suffering of men who kill their daughters for family honor is very different in Jordan than it is in the United States. So is condemning the act as murder, and asserting the girl’s right to live regardless of what other people think of her worth, or what others would find best.”

    Exactly how is “honor killing” (murder) different in Jordan than here in the United States? Isn’t murder murder? Why should it get a pass just because it happening over in Jordon and not here? How could there be a time to sympathize with the murderous father in his “honor killing”? It all sounds like a double standard to me.

    The killing of anyone is murder. It’s just as wrong for a parent of a disabled child to kill that child (regardless of whatever misguided notions driving his motives) as it is for a father in Jordon to murder his daughter (via his religious/cultural notions)through the so called “honor killing”.

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