Condensed old-post response to twisting of experiences


Typing hurts so this is a condensed version of a long post. Apologies in advance for lack of nuance. The long version was written before my last several posts (written last week) and resemblance to later happenings (which in some places is strong) is coincidental.

This is about me but surely applies to many others so should be read as broad-contained-within-narrow. So should many of my posts which some people mistakenly read as person-specific or autism-specific.

People call up an image with words. They use it to sell their cause of prevention, cure, institution, etc. The image is in many heads a fuzzy stereotype, in other heads such stereotype imposed on real people yet untrue even on the people.

People throw words in my face one after another as justification.

The words evoke real inside life for me not life of hypothetical or outside person.

They say ‘banging head’ I know the feel the constancy the effects on vision motor skills and thinking and other-side-of-head splitting headaches and blacking out. I know counting of thousands of banging per hour.

They say ‘institution’ I see hear feel smell real concrete lived experiences inside.

They say ‘alone’ I remember total isolation. Also remember presumed lack of social interest while interested. And remember how long I believed, and gave up on the belief, that there must be other people like me in certain ways, in the world, before I started one by one finding them.

They say ‘in a corner’ I remember exact one corner, specific corner, spent ages barely moving all the details of this.

They say ‘no understanding’ I remember the waterfall sound of speech still often happen, and pattern rather than typical abstraction. I also remember still often people speaking as if I not exist not understand people even telling each other “she doesn’t understand”. I remember nonsense sounds that years later understood the words, that were thought I would never understand or remember. I remember understanding things others never even thought to understand and thus never tested.

They say ‘no communication’ I remember endless attempts to communicate ignored, robotic non-communication praised. I remember interpreter after interpreter barred from helping because “she could not possibly be communicating that complexly with only her body, we see no real communication”. I remember impossible to communicate many things frustration, I remember before I knew what communication was, I remember only knowing bits. I remember now using alternative communication, I remember gradual loss of speech.

They say ‘will never’ I think of all people said I will never do just ten years ago that I have done. I think of prerequsites for ‘independence’ that I never met yet but here I am in my own apartment.

They say ‘unaware of danger’ I remember balancing on fences, climbing trees in unusual ways, walking into traffic, licking or trying to eat inedible objects, sometimes unaware sometimes unable to do otherwise even if aware. I remember interest in straight lines and circles and shining lights so intense it overrides any notion of ‘wheels’ and ‘road lines’ and ‘headlights’.

They say ‘no initiative’ I think all the time I spent barely moved yet needed assistance waiting yet never got what I was waiting for because not moving meant to them empty-headed or stubborn. I think of also having different initiative than pleased captors.

They say ‘no sense of time’ I think of stare at object no sense of different between hour or day. I think random sleep. I think of moment passing without reflection. I think of barely even now grasping difference of past/present/future and my conception of the world being outside time.

They say ‘no body awareness’ I think of having other people touch to tell me where I am and how to move. I think of feel pain but not know where. I think of body as external sensation just as room is, cannot always differentiate pain or itching from a desk.

They say ‘bite self’ I taste it and see the bite marks on hands and arms.

They say ‘incontinence’ I not only know the feel but also the feel under neglectful circumstances and going everywhere instead of one place and sitting in it for hours if stuck.

They say ‘violence’ I recall caged-animal fear and lashing out and treated with more violence than I ever had the power to inflict.

They say ‘mind of a child’ and I see test results putting developmental so-called ages on what I can and cannot do, but never being those ages at the time.

They say ‘screaming’ I remember doing so until I lost my voice at home, in public, in institutions, or in other places.

They say ‘no emotion’ I remember emotions without usual expressions or not in the usual situations, being chastised for ‘inappropriate’ emotion.

They say ‘no personality’ I remember records stating I probably had severe/complex developmental disability prevented formation of cohesive personality.

They say ‘cannot dress self’ I think of prompting both physical and verbal, ‘cannot feed self’ and I think of help moving arm and when they move my arm wrong by accident and what malnourishment does to the body and mind with pain and irrationality and food-obsession. I think of being walked step by step through every activity of daily life starting not with “pick something up” but “here is how to move one body part, now here is how to move the part next to it, and the next one,” all the way through the task, collapsing in exhaustion several times throughout and having to start over, doing it wrong anyway, never getting it all done. I remember stopwatches and clipboards in futile attempts to teach me some of these things.

They say ‘no communicate pain’ I recall many urgent medical problems never mentioned even with adequate communication system. I recall also being told I was not in pain because no facial expression even in excruciating pain. I remember taught not to scream with broken joint. I recall 20 years of severe pain never diagnosed. I recall emergency workers (ignorant of auties) saying I must be on PCP because of total imperviousness to pain when fighting them.

They say ‘low functioning’ I see the records and hear the conversations that use this and many equivakent terms on me, not ancient history but a few years back. I see the bottoming on test results of ‘functioning level’. The expectation in people’s manner of my being not really here or thinking. The arguments about salvageability like I am a shipwreck.

They say ‘brain scan is proof’ I remember the proof that I had a ‘broken’ brain the brain scan used as ‘proof’ of so many things I was supposedly incapable of. I remember hearing people say “her brain beyond repair no sense helping her she is gone no longer a person didn’t you see her chart look at this look at this get her out of here worthless impossible to help nobody home” outside room I was strapped in.

When people use these stereotyped repetiton of words and phrases (non-auties do it too in both senses of the word stereotype!), or the photographs or drawings meant to evoke same, it is, bam-bam-bam, one in front of the other. Each one conjures up not fuzzy half-formed abstractions or images of other people, but real vivid immediate multisensory multidimensional concrete experiences from my life (not even the life of a person around me).

After that bombardment, people use it to justify things I find horrible, as if my mere existence is unthinkably awful. If I call them on it, well then there are the “But we don’t mean you” statements, the inability to conceive that these conjured-up constructs are more concrete and immediate for me than for them. If I try to explain these bombarded images and smells and sounds and feels and everything, my motives and emotional state and character become questioned and analyzed and demolished. (No I am not constant-angry, asking for pity, lying, or hating.)

But evoking these strings of experiences at me one after one after one and then barring my access to them and then using this to argue against everything I believe in is a lousy tactic. I do not need it explained patiently to me that my life and the lives of my loved ones exist, while simultaneously twisting meaning and value out of all of us and ending with “We don’t mean you” when so clearly they do.


About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

3 responses »

  1. *nods*

    Al comes out with stuff (from when he was more or less considered a write off), five, six years later. I dont think there was understanding at the time, but all those things were stored until he could understand/ process that. So i hate when people say all these hurtful things in front of people because even if it is true that they dont understand right then, they might later. I dont suppose it’s any less hurtful even if it is years later.

  2. It’s funny how minor a pretext some people require to decide that there’s nothing in you that qualifies as a person. The idea of what constitutes ‘having a personality’ is strange.

    I have never had anyone decide I had no mind left, but I have been described as an empty shell and as lacking a personality during times when I was obviously speaking (even if only when spoken to), writing, drawing, and interacting both verbally and non-verbally with various people. Also been described as “she sits around doing nothing and staring into space all day” when doing, again, all the abovementioned things. Even in front of the people who described me this way. I’m not sure if they just remembered (or misremembered) selectively, or if they actually couldn’t believe that I did things with purpose and direction.

    There were people who believed I had failed to develop a personality, or had not adequately shown myself to have one, even though I was expressing opinions and preferences. When I expressed them more often and vocally, there were people who believed that I was actually just copying and imitating others, and repeating what they said.

    I never figured out what their definition of ‘having a personality’ was, but for some of the people who described me as having none, it seemed to come down to making myself reducable to a set of of specific traits, and participating in social small talk. Personality seems to be defined as a construct of how you present yourself in interactions with others, as opposed to how you think, feel, believe, dream, perceive, etc.

    Or, perhaps more accurately, if you don’t do the former in a way that’s approved of, and that other people decide qualifies as ‘real’ social interaction as opposed to repetition and imitation or reflex motor movement, the idea that you are capable of doing any of the latter (apart from basic stimulus-response reactions) is dismissed. When talking about animals, for instance, it seems to be common for people to dismiss all forms of non-verbal communication that they engage in as being just the product of “instinct,” not of conscious thought. They’re only willing to even consider the idea that an animal just might possibly be trying to deliberately communicate if they can do it in a way that at least slightly resembles human spoken language.

  3. Amanda:

    I just read your website and decided to read your blog about different words like ‘institution’ and ‘communication’. It was interesting to read because after seeing you in Burlington, you communicate quite well. In fact, I like the fact you type to communicate because I have auditory processing problems and it is easier for me to see what is said than the hear what is said. I also was thankful that you used a big font. That helped me, too. I love augmetative communication. And not only that, but if I am in a non-English speaking country, I’d be using an augmenative type system. Also, I like the fact that you have a dog and a cat and that they sleep on the bed together. Also, I like your friend with the parrot, Eagle. (Forgot her name, but remember the bird’s name.) And I loved looking at Lake Champlain. But finding out that I was looking at NY state was surprising to me. I like the fact that Burlington is a small enough town to walk in. I hope that if come to Burlington again, that I will ride the bus and ride the ferry to NY state. I don’t want to go to VT in the winter. Too much snow. How a California girl stand the winter in VT? VT is a pretty state. NJ is an ugly state, MO is a disappointment. I enjoyed Autreat. It was fun and relaxing. Like a 60s be in in the 21st Century.

    Kathy Grant

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