Category Archives: Uncategorized

Educational History

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I’ve written about most of these things before in lots of places but it seems that some people are confused about the order. Here’s my formal educational history:

One year at a Catholic Montessori. Age 4.

Four years of public school. Age 5-8

Four years of private school. Age 9-12

Three months of high school and the rest of the year in homeschool. Age 13.

One year of a college for young students that combined college and high school material. Age 14.

Three years of some combination of no school, institution school, and special ed. Age 15-17

One year of community college. Age 18.

A month or two of university in a college for atypical students. Made it to class two or three times ever. Age 19.

My actual education?  Mostly stuff I figured out by doing it or reading outside of school. I’ve close to instantly forgotten nearly everything school tried to teach me. The things I remember about school have nothing to do with the curriculum and everything to do with the lessons we were taught without anyone saying:  What it means to be autistic among mostly nonautistic kids, middle class among rich kids, kid dominated by adults, kid declared gifted who was nothing like the other “gifted” kids, shoved into harder and harder classes because people thought I was bored when really I was struggling to comprehend, trying to look like I understood the words pouring out of the teacher’s mouth when I couldn’t at all, special ed high school student who’s been to college, and on and on. Those are the lessons that I really learned in school, rather than just briefly memorizing and then forgetting.  I learn from life, not from lesson plans.

More detail on these experiences is scattered throughout my blog.

What I just told someone who didn’t match current autism stereotypes.

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It’s not really that you contradict what autism is, it’s that descriptions of autistic people came about like this:

Kanner saw a bunch of people and grouped them together. He observed some things about them. Some of the observations were accurate. Some were more conclusions than true observations. Then he came to conclusions based on both types of observations. Many of his conclusions were false. (Note: Most of Kanner’s patients would today have a high chance of being diagnosed as AS and all but maybe one or two fit at least one definition of high functioning. Several went on to college. There are many modern myths about who these people were.)

The next person came along and put more people into the category of autistic. These people included people who appeared like Kanners patients appeared, people who were like Kanners patients were, people who appeared like Kanners conclusions, and people who were like Kanners conclusions.

This has been going onin many iterations for generations. And since 1980 it’s been happening to Asperger’s patients and conclusions too. (His patients were roughly the same as Kanner’s, but he drew different conclusions.)

This means that people who get called autistic are an incredibly diverse group of people and that virtually nobody matches the conclusions. And yet those who either match the conclusions, think they match the conclusions, pretend they match the conclusions, or may or may not match but other people can force fit them to the conclusions — those people will get called more typical or more autistic. Even though they are neither.

So knowing all that I’m never surprised when people don’t match the conclusions. The conclusions come from generations of faulty observations, faulty logic, and faulty science. And then no matter what the conclusions are, people who match them or who think they match them or can be said to match them by others, suddenly start getting diagnosed more. It’s a disturbingly tangled thing and I wish more people noticed.

Adding on to what I said before: I am extremely disturbed by the amount of people, autistic and otherwise, who actually believe in the various tangled threads of the idea of autism. Why don’t they notice how these things inevitably have to come about? Why do they take people’s word for it that “This is so because someone with authority says it’s so”? Why do they put stock in tangles on top of tangles on top of the flimsiest foundations? Why do they believe whatever the latest thread of the tangle that is descriptions of what autism is, and then privilege those of us who (say we are/think we are/pretend we are/really are/aren’t but don’t have the power to resist being represented as if we are) the same as the ideas in that thread? Why don’t they notice the difference between being that way, thinking we are that way, force fitting ourselves and saying we are that way, pretending we are that way, and having those with more authority insist we are that way? Why are such people considered “more typical” even when they’re a minority? Why is it that people read Kanner or Asperger and believe their conclusions and value judgements as if they are true unbiased observations? Why don’t people see the contradictions between their observations and their conclusions?

It really harms people when people don’t question all these abstractions piled on top of more abstractions piled on top of still more, for generations now until they are steep towers reaching into the clouds, rather than on or near the ground. (Is it my inability to climb that high that makes it easy for me to question these things?) It makes me feel vaguely ill when I see the various consequences of autistic people themselves believing these abstractions so intensely — whether it’s people thinking there’s something wrong when they don’t fit a stereotype, or acquiring more status because they (do/think they do/say they do/pretend they do/have others with more authority convinced they do).

Mini-feline-ethics post: the power of life and death

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I haven’t yet got to my third post about feline ethics, which is going to be about power. But I just found out today that an article I thought was only in a print copy of Mouth Magazine is also published online by Disability Studies Quarterly.

I had gotten the article because someone claimed in response to a feline ethics post, that everyone who loved animals would agree that euthanasia is a good thing. And AnneC pointed out that this is not in fact the case, and that she (as I do) has serious problems with the overuse of euthanasia on cats. And I remembered this article. Unique in breaking the massive taboo against questioning pet euthanasia:

Disability Culture Meets Euthanasia Culture: Lessons From My Cat

The biggest power we have over cats is the power of life and death. Whether or not we swear we would never use it we still have it. It is not a crime to take a cat to the vet and have her killed because she was scratching the furniture, or because she is homeless. We have this power and cats know we have this power. Every animal knows that a bigger, stronger animal is a potential threat to their life. And this is just talking about uses of euthanasia that have nothing at all to do with terminal illness. I won’t go into everything I think, but suffice to say that I think in a better world euthanasia would not be used for trivial reasons ever, and would not be considered the first and best option (rather than, say, treatment and palliative care) the moment a cat is diagnosed with something scary. And there would be better pet insurance than currently exists, and there would be more research into feline pain management (very different from humans), assistive technology, and modifications to the home. And only then should euthanasia even be brought up as an option, if it has to be. We have too much power, we are too frequently persuaded to use it wrongly, and that we use it out of love and guilt doesn’t make the cat any more alive in the end. (And I’m as guilty as anyone else.)

Awkward questions about thinking.

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A few years ago, someone asked me what I had been thinking at a certain point in time, and nothing true that I said seemed to satisfy him.

I described what was happening at the time.

“But what were you thinking?”

“That is what I was thinking.”

“Really, what were you thinking?”

“Well I was uncomfortable with being touched…”

“That’s a feeling. What were you thinking?”

“The dark behind my eyelids. The sensation of pressure on my arms. The sound of rustling.”

And eventually I gave up and he was never satisfied.

The thing is, most of the time I’d give similar answers. As far as I’m concerned, processing sensory input, including emotional responses from inside my body, are part of thinking. They are the main part of my thinking, at that. Yes, I do have the kind of thoughts that everyone calls thinking, but not all the time. Not most of the time. Sometimes it pops up automatically and sometimes I push my way into it. That kind of thought takes work and work takes energy. Even locating touch as on my arm takes energy, but it takes less, especially if I’ve had time afterward to work it out.

So that’s yet another common assumption: That everyone uses that standard kind of thinking1. So much so that many people (including many people like me) decide that my predominant way of thinking isn’t thinking.


1 When I say standard thinking I mean a wide variety of kinds of thought. It doesn’t matter if it’s in words, pictures, abstract ideas, or what. And it’s not a matter of being “NT”. What makes it “standard” for these purposes is that it goes beyond taking in your environment in realtime. I’m sorry I couldn’t come up with a better term for it.

I have become a cyborg!!

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Did the trial surgery a couple weeks ago, and did the full surgery this morning.

I now have an implant that zaps my muscles in some way I don’t fully understand, to stop my urethra spasming so I can urinate. And it’s working extremely well most of the time and moderatelycwell the rest of the time. I’d forgotten what normal urination felt and sounded like. (And yes I tried other treatments before going to this.)

I now have a remote control with a receiver in my butt of all places.

It’s going to take awhile to recover from the surgery though. The pain isn’t too bad (surgical pain is usually less painful than several of my chronic pain conditions). But bodies don’t differentiate between surgery and being stabbed, and I’m on megadoses of antibiotics, and anesthesia makes me weird for at least a few days. Not to mention that my body is trying to figure out what the implant is doing inside of it. I hadn’t recovered from the surgery to put the test wire in by the time they did this surgery, so figure on me being blech for awhile (and I had to promise the doctor I wouldn’t do all the bending and lifting and crap I did after the last one).

If I don’t moderate comments very fast, this will be why. Then again I’m lying around not doing much so maybe I’ll do it more.

I AM NOT PART OF THE AUTISM HUB. Period.

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There, maybe now that it’s in big bold letters people will listen.

I left the Hub last November and wrote this post explaining why.

I have had, and wanted, nothing to do with it since then. Heck, I have wanted nothing to do with it since a long time before that and stuck around from pure inertia.

I am not part of the committee that runs it. I am somewhat annoyed at the committee who runs it (and I don’t know or care who they are) for listing my blog there again, despite my previous posting about why I didn’t want to be there. They assumed I would want to come back as soon as the Hub was under new management. As if that was my problem with it. All the problems I listed in my post remain problems and may always be problems no matter who runs it.

Some of the problems I listed are problems that come up in most groups. There is a reason I am not part of most groups (and any groups I remain part of, my participation is generally pretty dormant, aside from one I just remembered that remains blissfully drama-free and is quite task-focused rather than nebulous).

I am not part of the group even in any casual manner. In fact, at this point I can’t think of anyone I interact with regularly on a casual basis who is a Hub member. Not that there’d be anything wrong if they were. There just aren’t.

I really, really loathe both formal and informal groups that attempt to function like Hotel California (“You can check out any time you want but you can never leave”). Because I don’t at this point want to be associated with any group at all. But there are a couple groups that have never accepted my leaving or where others outside of them have never accepted my leaving. And that’s not okay. Groups you can’t leave no matter what you do are my worst nightmare.

*sigh* I don’t mind the existence of groups. I don’t mind other people being in groups. But at this point in my life group membership feels like entanglement and strings attached. If I have a goal in common with a group that I feel strongly about I will work with it when necessary and then part ways. There’s nothing about the Hub that I feel that strongly about, and I’ve always been bothered by the concept of Hub As Group instead of Hub As Blogring anyway. When I joined it was a blogring, when it became something else I wanted out.

So this isn’t about unwillingness to work with people or groups. It’s about unwillingness to join groups. It’s about a loathing of places with entanglements and strings attached no matter how much or how little they may appear to have things in common with me. It’s about being sick of being pigeonholed as an autism blogger or something else like that when I’m an ethical/political blogger who happens to be autistic among many other things. It’s about everything else I wrote about in my old post when I left, and much more of the same general sort. It’s about being a human being and not a stereotype, not even a beneficial seeming one.

Do I hate communities? No. But I hate groupthink and other cognitive warpage that sometimes springs up in them. I hate when I feel like an individual interacting with a group of other individuals, but other people insist on acting like I’m a representative of the group or like we are all identical.

So, basically, no. I am not part of the Hub. I never again will be part of the Hub. No matter how the administration changes. And I am not even part of the Hub in an informal sort of way. I’m just not. Period. And I am the only person in the world who gets to decide what I am and am not part of, and what that means to me.

Comments are disallowed because I don’t want to discuss this, I just want it known. Having it ignored is aggravating enough, I don’t really want to go through all the social crap that transpires after statements like this, I haven’t got the energy (less than usual, even).

What I mean by “beneath” words.

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I was trying to explain to someone what it meant when I said that I spend  so much time “beneath” words, and have to climb up to them from below. And it hit me that I could depict all of the different layers I go through one on top of the other. I once depicted them (but not all of them, and not showing them as layers) before, so I already knew some of how to do this. I used cut out pieces of construction paper to do the top six layers, and paint for the bottom two.

underwords

I’m numbering the eight layers from bottom to top, but describing them from top to bottom. So I am going to start with the eighth layer.  Also these are the layers for written language specifically. Some of them do correspond to spoken words.  

The eighth (top) layer shows the words, “Don’t you know another”. It could be any words, but after not having a clue which to use, I chose the start of a sentence that a guy in an emergency room told me when I was a teen, after I was picked up very overloaded in public and humming one tune over and over to calm down. (He was in that mode people get in when you’ve become unable to talk so they suddenly decide you’ve become unaware of your surroundings too, and they mutter at you in a specific tone that seems to assume you will never tell anyone what they said.) These words represent what happens when you understand the words perfectly well.  

The seventh layer reads “melly doxel rin tunsh”. It represents being able to recognize the sounds a word might make, but not being able to understand their meaning. Whether or not you know that words can have meanings (I didn’t know that when I learned to read, and had skipped over some layers entirely that only became meaningfully separate later).  

The sixth layer reads “ncj fv rztlh xlm hnnc”. This layer involves recognizing the letters as letters, but not deriving sounds from them. 

The fifth layer shows a series of symbols such as circles, squares, zig zag lines, and other shapes. They are arranged as if they form words with spaces between them. This represents recognizing the letters as symbols, but not as recognizable letters.

The fourth layer shows a series of small slightly wavy lines, arranged in a pattern. This involves recognizing the letters as separate things, but not recognizing them as symbols. 

The third layer shows a bunch of joined together lines. This represents seeing and noticing a black pattern on the background, but not really separating out the pieces. 

The second layer is painted. It shows a variety of shapes, some recognizable and some not, some vague and others clearer, all blending into each other and the background. The photo has different colors than the real object due to the flash, for instance something medium green came out almost light pink. There is some loss of the actual multilayered texturing that’s in the real one too.  This layer represents just sort of seeing a lot of shapes and colors and visual textures, and the patterns those things make, and not even noticing the text at all.  Although it’s by nature visual, this is usually happening in all the senses at that point. 

The first layer is gradually and unevenly shaded into by the second layer. It shows a textured black background with a white circle in it. This is when not even sensory impressions make much of a dent in conscious awareness. The white circle is meant to show that even though this may seem completely blank in some ways, it’s not as empty as it may seem. (When things seem totally empty I feel “disappeared”. I did not attempt to draw this, but it would be zero.)

The things I drew were usually somewhat arbitrary. It would be possible to include more or fewer layers, or things “off to the side” that don’t fit into a simple sequence. I drew this to communicate a basic idea, not to do a perfect representation of everything.  There are doubtless layers above eight too — but I drew this to show what is beneath what most people think is the most basic, not to show all the different levels that fluent reading can take.  

Anyway, in different people who experience all these layers, things may work differently. For instance someone might live in the sixth layer, climb to the seventh layer easily, climb to the eighth layer with more difficulty, fall back to the fourth layer during ordinary shutdown, and the second during more severe shutdown. Such a person will have a very different experience of each of these layers than I do (for instance viewing the second layer as total confusion instead of comforting, familiar, and easily navigated).  And a second person may live in the sixth layer also but never make it to the eighth and have great difficulty with the seventh. And someone else may live in the fourth, and climb to the seventh easily by skipping the fifth and sixth altogether. 

I generally live in the second and first layers. This is where I am comfortable and have the widest experience navigating. I have a lot of experience built up there and it isn’t disorienting.  There are things that can disorient me during shutdown but they aren’t part of the scope of something about reading and are hard to depict. And then there’s layer zero during shutdowns. 

Climbing up to layer three and four can be done with some effort. It’s not always possible but it’s easier than the things above it. 

Layer five has a barrier that takes much willpower and effort to push through. Layer five is when things become pretty painful. It’s like each time I look at a symbol and recognize it for one, it burns my brain and squeezes on other aspects of thought until they run off and hide. 

There is a similar thing that can happen to me when at a similar layer in perceiving my surroundings in general. For instance, I might pick out anything circular in my surroundings and each circle I see hurts my brain the same way.  And in listening to my environment, I will generally pick out a really annoying and short musical rhythm or tune from the sounds around me, and hear it boring its way into my ears over and over. 

Past that barrier, things might be hard but nowhere near as hard as going through that barrier is.  Sometimes I go to the sixth level and sometimes I skip it and go straight to the seventh. 

Between the seventh and eighth there is another barrier. Not as big as the barrier between fifth and anything below it, but still recognizably difficult. My guess is that’s because putting actual meaning into the words is very different from, say, matching a set of sounds to a set of visual squiggles, which is just pairing one sense with another without having to match it to concepts. 

(The concepts themselves are usually not one word at a time. It’s more like, what set of words goes the most often with what set of experiences, and then which patterns of word orders and such go with which others.  And then skip the words you don’t understand (more than you might expect) and take what’s left and hope it makes sense.)

Anyway, obviously most of these layers involve climbing, and some parts of the climb are steeper or more difficult than others. But often I will find that it’s impossible to climb any higher than a certain point no matter how hard I try. Other times it’s impossible to climb because I entirely forget that the higher layers exist. Frequent cutoff points for both of those are between two and three (the point where the text is noticed), four and five (the point where symbols are recognized), and seven and eight (the point where meaning of words is introduced).  

Additionally, most of the time I let go I fall down to at least the second layer if not the first. Sometimes I fall down to the third or fourth instead. But there are two really terrible things that can happen instead. I can get “stuck” in one of the really painful areas. 

Getting stuck in the fifth layer happens sometimes. It’s as if the symbol-recognizing thing in my brain has so much momentum that it takes time for it to stop and drop down to something easier to take. Everywhere I look there are symbols. And every symbol noticed is pain. There is no way to stop this except to ride it out. 

But even worse is getting stuck at the eighth layer. This happens if I read or write too much without falling back to the lower layers to rest. I described this layer as the one where meaning is added. But I meant this only in the sense of matching a set of words to a meaning. I didn’t mean meaning as in meaningful. Quite the opposite.  

When stuck at the eighth layer, there is no escaping the words whether I look at words or not. The words have gotten inside my head.  The meaningfulness that I derive from the second layer is nowhere to be found. Direct experience is nowhere to be found. The only thing to be found is words, words, and words. 

Things go orange or yellow (the two most painful colors) and flickery, accompanied by an equally flickery ringing in my ears, and a dry burning all over my body.  And inside my head all I see or hear are words. Flickery words. Buzzing words. Words. Words. Words. Words. Words. Repeating like that in an endless loop.  And the terrifying emptiness that to me seems like the essence of what words and all other abstractions are (yes I am a writer with a loathing for words).  

The longer I try to do something like read to take my mind off the flickering, the worse it gets and the longer it takes to go away. Time seems infinite at times like this. The only thing to do is suck it up, lie down in a dark quiet room, and tough it out until it either disintegrates or I fall asleep.  If I’m awake, I gradually experience more and more periods of dark quiet, until finally the humming flickering wordiness dissipates. Usually at that point I’m exhausted and possibly have been frozen in one position for hours. 

I can think of very few experiences I like less than becoming stuck in the eighth layer.  I would far rather deal with shutdowns where nothing I can’t feel/see/etc. exists and I keep hitting layer zero and vanishing from my own awareness. 

Another important thing is that people operating at the same layer are not necessarily experiencing the same thing. My ability to read means I can operate at the eighth layer despite living at the first and second most of the time. Another person might live at the eighth. Another person might live up at some sort of eleventh layer I haven’t got into, and be experiencing the eighth due to shutdown. The person who lives there will be the only comfortable one. I will be uncomfortable because I am greatly stretching my abilities and hanging by my fingernails. The person from the eleventh layer will likely be distressed and disoriented because their usual abilities are gone and they don’t have the long experience functioning in that layer that someone who lives there does. 

This is one reason I find it really offensive when people assume that every person who can read and write (at least some of the time) has identical experiences. That assumes that everyone who can sometimes get to the eighth layer lives there, doesn’t understand the other layers that come before it, and can always get there. It’s not that simple. It’s not even as simple as the picture makes it look (and this picture is only about reading!). Life is quite a lot more complicated than that. 

So that’s my simplified guide to what I mean when I talk about living “under” or “beneath” words. Similar but not identical things apply when I talk about what’s “beneath” certain kinds of thought, perception, movement, etc. Oh and generally writing something this long puts my reading at layer seven at best, which is one of several reasons I can’t easily proofread, summarize, remember what I wrote, or do various other things.

Kowalski and SBWG close their blogs due to cyberbullying.

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Blogging Against Disablism Day: An Obituary

A community that tolerates and enables bullies, stalkers, and miscellaneous similar people, is no community at all. Do that and eventually many of the people who are or fear being targeted, will just fade away and hide. And only those of us stubborn enough to remain despite the harassment, defamation, and death threats will be left. Taking part in a community shouldn’t require the level of stubbornness I have learned, or disregard of one’s own safety. I go online every day knowing that my address has been posted on the web along with solicitations of murderers, rape jokes, and just about every possible level of nastiness and invasion of privacy — and my friends, family, and coworkers have been subjected to the same things. I’ve even seen other people first victimized by the same bullies and then told “The bullying will stop as soon as you denounce Amanda/join in the bullying.” I have learned to live with that. But people shouldn’t have to live with that.

There is no excuse for actively enabling bullies. These things are not some kind of “it takes two” situations (flashbacks to being beaten up in elementary school and being told “it takes two”). You don’t see me, Kowalski, SBWG, or most other targets running around harassing, threatening, or stalking anyone (although you can bet that bullies try to make themselves look as if that is happening to them to justify what they do to us). Sure I’ve seen bullies and their enablers bullying each other from time to time, I’ve seen two stalkers stalk each other. But it’s not normally what’s happening. These aren’t personality conflicts. This isn’t about someone just “not liking” someone else. And it’s not like being autistic or otherwise disabled means someone’s innocent — back in my IRC days we had at least two autistic stalkers and at least two autistic child molesters banned from our channel as well as miscellaneous other autistic bullies. (I’ve also heard “But she hasn’t killed you yet so the death threats are harmless.”. Seriously?!??)

This has to stop being acceptable. People have to stop being complacent. Any community that tolerates and enables bullies is practicing de facto exclusion of everyone who is in so much fear of being a target that they leave. That’s why my blog doesn’t allow such crap to go on here. If bullies want a forum they can have it somewhere other than here. (And when autistics.org begins to allow other blogs again that will continue to be our policy.) You shouldn’t have to have the kind of emotional shielding I have learned in order to participate in online discussions. (And yes this is an accessibility issue.) People need to take a stand on this stuff and quit sweeping it under the rug. Otherwise the bullies win every time someone fails to write because they’re afraid. (Although what the bullies are winning always confuses me. I mean they don’t actually gain anything legitimate or useful from what they do. They just get to be incredibly nasty to people. Which is a pointless goal.)

Also, bullying does more than silence people. It also kills. People commit suicide because of bullies all the time. (So all of you well-meaning people who enable bullies? Look at what you’re enabling because it ain’t harmless. And it wouldn’t be harmless even if it “just” caused pain, fear, and suffering either.)

I’ll end by linking to meloukhia’s post: Internet: It’s time to talk. And a warning: neither bullying nor apologist/enabling bullying will be tolerated in comments. So don’t even bother trying.

Edited to add:

Riel of Amorpha came up with a list of good and bad ways to deal with this kind of bullying and put it in comments. I am adding it to the end of this post because it’s important enough I don’t want people to miss it:

Finally came up with some thoughts (after we said in reply to Kowalski’s post we were still thinking about it) about things that we think are helpful and not helpful when a community is trying to deal with online bullies. Much of it gained through bad experience when we tried to deal with them in the wrong way or other people around us did or tried to encourage us to deal with them in the wrong kinds of ways.

What is useful:

  • Supporting the victim of the bullying and affirming that they have the right to be free from bullying.
  • Taking their fear seriously (as opposed to blowing it off with “oh, you shouldn’t care what those people think,” etc).
  • Block known bullies, and people who have agreed to defame others in order to escape bullying themselves, from commenting in any space you can control. Even when their comments are not actually harassing or targeting anyone. Because just seeing their presence can have a chilling effect on others– “okay, maybe they didn’t attack me that time, but what about next time?”
  • Keep others in a community informed about the activities of known stalkers, bullies, etc, if you see them going after new victims, starting new harassment campaigns, etc. Also if you know they’ve been creating new aliases, sockpuppets, posing as others, etc.
  • Find some way to warn newcomers to a community about stalkers and bullies. Especially if you see them gravitating towards bullies because they (new people) haven’t seen their bad side yet, or are confused about who to trust, or are falling for the pseudo-authoritative veneer a lot of bullies have, or think they should “give them a chance,” etc.
  • If harassing/bullying/intimidating comments do get through in any community you have power in (in large communities, for instance, sometimes this can be hard to prevent), make clear, for both the victim(s) and for bystanders, that you will not tolerate this kind of treatment of others.

What is NOT useful:

  • Telling the victim of the bullying to “not care about what other people think.” To a certain extent it’s true that you need to not care what other people think, if you want to express opinions that are currently not accepted by most of society. But when harassment goes past a certain point, and especially when it gets to the point of threats of physical or legal harm, it can’t be reasonably ignored.
  • Telling the victim of the bullying to ignore it because the bully is too “unimportant” to be taken seriously. “Unimportant” people can still become extremely persistent harassers and stalkers. And it doesn’t matter how “unimportant” someone is if they’re genuinely able to convince others of their lies, or incite them to attack or threaten people.
  • Trying to argue/letting other people try to argue with them in comments. This both has a chilling effect on others and floods out any attempts at actually productive discussions. (Several people have already talked about why doing this in the name of “free speech” is a bad idea so I won’t go into it.)
  • Trying to drive them off by being “just as mean as them” or trying to incite “war” between your supporters and theirs. Just… no, this always goes horribly wrong.
  • Trying to find a “middle ground” between yourself and a bully, or between your ideas and theirs. A bully will never accept a middle ground. They will only accept terrorizing and manipulating you into shutting up or repeating their ideas as if you agree with them.

We’ve also seen the thing that AnneC mentioned about bullies (some of whom appeared to be totally the opposite of bullies at first meeting) acting like they are “in the know” about everyone and everything and like they can inform you about all of it, and putting scandalized interpretations on everyone and everything and getting people emotionally riled up for their own purposes.

In the Sea of Nun

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The next disability blog carnival is on the topic “Story”. Which is convenient because I had meant to post this poem soon. Like most of my poems, it wrote itself and I had to work out the possible meanings afterwards. Some parts were obvious — the first part alludes to specific conversations with professionals in my life. Other parts I only had a feel for and struggled to put it into words.

I noticed two really important aspects of this story. It’s about the difference between my life as experienced by me and my life as defined by everyone from professionals to random others around me. It’s also about the intense lifelong passivity that (despite the best efforts of the professionals who pathologized it) I have only recently begun to break out of. Someone online once aptly described it as “leaf in the wind”.

About the unfamiliar words used: Ghin and foom are nonsense words intended to serve as placeholders for certain ideas in the story. The sea of Nun is an actual part of ancient Egyptian folklore, although this story I am telling is not a part of that folklore and isn’t intended to correspond to anything other than certain aspects of the water itself.

In the Sea of Nun

You told me I didn’t know what water was
I told you, “There is more to the sea of Nun than you could ever guess”
But you told me words were the only way to wisdom
Do you know what life is like floating without fins or flippers to move yourself from here to there?
Do you know what it is like before those words you hold so dear?
Have you been blown around in the currents?
Have you had to make your life wherever the water took you?
I may have seemed like a sleepwalker to you
Without the parts you use to guide and steer
But part of me has always been wide awake

I sit alone, and time is gone
You come in, and turn into a blur of movement and sound
I am like a statue watching living people fly past
But when I’m alone, time stands still for me again

In between your words is silence
In that silence is the world
Beneath all your ideas things come together on their own

I am awake when you call me asleep
I have a voice when you call me silent
I can navigate where you see only chaos
(In the waters of Nun)

The lines are twisting underwater
I feel them spread and branch away
They twist around the corner
They wrap around me sideways
They double, triple, even more
They slide around and up and down
And still it all makes sense to me
Or maybe it makes me to sense
Either way this is my home
And there is life in the sea of Nun

One day I woke up
There was more than the sea
There was a strange place
I found myself there
I didn’t go there
Make no mistake
I just was here then there

How can I describe it?
You have always had a ghin
What is a ghin?
It’s what you’ve always had
I don’t have a ghin
Something else was built
But how can I describe the building?

You have a ghin
You can never know the steps it took
I didn’t build it
It built up like collecting dust
So the dust settled on me
More dust
More dust
More dust
More dust
Eventually the dust hurt
And more dust
(Ow)

And then a mound of dust
A mound shaped a little like a ghin
But it was not a ghin
I will call it a foom
My foom tried to be a ghin
It had not the parts of a ghin
And the foom hurt
And the foom hurt
And the foom hurt
And you said “She is alive, she has a ghin”

And they all danced around
They looked at the foom
They touched the foom
They said “She is alive, she has a ghin”

“Where did she come from?”
(He pointed to the sea of Nun)
“Oh surely not there”
“Nothing from there is alive”
“Nothing from there has shape”
“Nothing from there is real”
“Nothing from there has a ghin”

They set me in the shallow water until I floated
They poked me with long sticks
They watched me bob around
They laughed

I felt the currents underneath me
They could not feel those currents
To them there is only chaos in the sea of Nun
They saw the part of me that was above the water
I lived in the part of me below

And they pushed, and they pulled
And I floated side to side
And they clapped, and they laughed
And the sea of Nun became my tears

I stopped moving
They threw a rope and pulled
I washed up on the shore
They formed a circle around me
Then they drilled me full of holes

They filled each hole with a different machine
And they whirred and they clacked
And I buzzed and I bounced
But the machines all fell out
So they pushed me back in the sea of Nun

And there I stayed and there I dreamed
And there the currents pushed me round
And there I drifted, there I slept
Until I grew flippers