Author Archives: Mel Baggs

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.
May23

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).

May7

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.

May2

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.

May2

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

May1

If only, oh if only

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[This is for Blogging Against Disablism Day.]

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”1

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are

1 If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

Apr27

Cats can use mirrors.

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Conventional wisdom goes that since, when given the classic and highly species-biased “mirror test”, cats “flunk” it, then they don’t know that their reflection is themselves, and don’t in fact know that mirrors reflect things and that they can see behind themselves using mirrors and so forth.

AnneC and I are trying to debunk a lot of similar myths about cats. The tests cats are given are often not cat-friendly and don’t reflect cats in their usual environment doing their usual things. And I’ve long known that Fey uses mirrors. In fact sometimes she uses two mirrors at once — the one over the sink and the one on the bathroom door — to make direct eye contact with people. More than one staff person who thought cats couldn’t use mirrors, have been startled, some even terrified, to see a cat looking them straight in the face using a mirror or two. One even screamed and dropped what she was carrying and just kept repeating, “Your cat looked at me in the mirror. Cats can’t use mirrors.”

Here’s a photo of her using one mirror to look at me as she hears me come up behind her with a camera:

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As to why that scares people? I think it’s the same phenomenon that has terrified many people about me. They see me going about my business and stereotype me as not being what they consider a real person. Then I do anything from looking at them to typing something and they visibly startle and begin to act scared. They respond to me as if a potted plant got up and walked around. And I see people doing the same to Fey all the time.

And why that is… I’m not entirely sure. I almost expect them to cross themselves like we are demon possessed. They think of us as something unnatural, something deeply wrong that just shouldn’t happen that way. And there’s something deeply wrong with that in a whole different way than what they think of us.

Apr22

Prism lenses

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[Photo is of me with new glasses on.]

So at my last eye exam (where I also have a way stronger prescription than before) the guy finally noticed I was seeing double. I had gotten to where I really had to concentrate to tell if I was or not because it’s been that way so long when my eyes are relaxed. (I had even bought an eyepatch for days when I really wanted single vision, and other times taken to closing one eye a lot. And I had no idea you were supposed to tell eye doctors about seeing double. I said I did once when my regular doctor asked and he never mentioned glasses.) And then he did a bunch of tests to see how far my eyes swing between double and single eye vision, told me I had exotropia (eyes that point outward from where they should, in my case both eyes), and prescribed prism lenses.

He told me it would feel weird when I got them on. And it did. Things sort of converged and then diverged in the other direction and swung in and out back and forth for awhile. Rapidly. Then it got so I was seeing single except if I relaxed too much. But the woman at the glasses store said that should change in a few days.

The hardest part to deal with, though, is the depth perception. I’m used to not having that. Even my tinted lenses didn’t help it this much. But it made my trip home completely terrifying.

I never knew how high off the ground, and therefore prone to tipping sideways, my powerchair was. There were all kinds of bumps in the sidewalk and missing tiles and stuff that look huge, I used to think they were quite shallow. At one point I overcompensated and drove my chair into a position where I was sticking out into the road and my wheels were spinning on air. (Thankfully a pedestrian helped me.)

I got home very carefully and nervously. I was constantly distracted by stuff sticking out at my face, noticing relative tallnesses for the first time, and really disturbing-looking bumps in the sidewalk. I used to navigate largely by feel, using sight just for crude measurements of where to go. Now sight was so accurate it was some combination of distracting and unnerving.

They have all told me it is a terrible thing to switch between prisms and regular lenses. So I am not doing that. It is weird though to take my glasses halfway off and see that something is double outside the glasses and single inside them.

So that’s all I know so far. They say it’ll take at least a few days before I finally get used to them. I hope I get used to having depth perception because running around outside seems fairly hazardous until I do. Things that I’ve done a hundred times by feel are outright scary now that I can see the size of some of the sidewalk cracks. I wonder how many of my visual problems are related to this, and how long I’ve had it.

Apr21

Imaginary Birds and Happy Cats

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None of these photos are of today. Today was far more… vigorous.

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[Photo shows Fey, a grey ticked cat with a white stripe down her belly, white paws, white chin, and a white four-pointed star on her nose, with yellow-green eyes. She is lying on her side, with one paw curled over.]

Today was one of the first days it was warm enough to take Fey out again since last fall. As usual, she was not happy with the actual feel of being lifted and put into the PetPocket. But everything else about her behavior — even including loving to sleep on the PetPocket — has always seemed to show that the good part of these walks tends to outweigh the bad (although when you’re dealing with someone whose only language is Feline, it’s always possible you’re missing something major). So I took her outside.

She never likes the elevator, and she never likes traffic although she can get used to it. But generally by the time we are out of the building and away from the lines of people flanking the entrance and going “ooooooooo kiiiiittteeeeeeee”, she calms down and starts looking around.

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[Photo shows me out in my powerchair with Fey peering out of her PetPocket.]

This being our first day out, she mostly wanted to duck down inside with widening pupils when we were near traffic. So we headed down a side road to get away from the noise (which frankly wasn’t my favorite thing either).

And then we heard it. Some kind of chittery bird noises up in the air. And Fey stopped worrying about traffic and poked her head up, ears pointy, whiskers out, eyes wide but
pupils normal, nose twitching like a rabbit. This is why we go on walks.

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[Photo is a closeup of Fey looking around out of her PetPocket.]

We found a tree with a bird’s nest in it and Fey just stared up and whipped her head around to get all the different birds in her sights. I sat around in the parking lot and tried to maneuver the chair wherever her head was pointing. After about half an hour we went home and she curled up in bed with me for a few hours.

But it doesn’t end there. This kind of thing never does. As it started to get late, I heard a “worrreeeauwwww” (and assorted other multisyllabic cat words) coming from the living room. Usually I go out and if she wants water she goes to the kitchen, and if she wants play she goes to the living room. She went to the living room.

Usually our play is pretty predictable. Nearing 11 years old this year, she doesn’t run all over as much as she used to. She likes to sit or lie on the couch while I wave a Cat Dancer back and forth in wide sweeping motions that come near but don’t touch her head. She bats at it for awhile, sometimes more enthusiastically than others. If she catches it, I give her some fish flakes (she loves them so much she’ll eat them out of my hand) and then wait for her to finish grooming herself. Then we do it all again if she wants to. I know most cats like to act as if the toy is prey, but she has made it clear she generally prefers the slower pace of trying to hit it as it whizzed by her.

Well, this time, I got out the Cat Dancer and started to wave it back and forth. WHAP. She hit it on her first try, which is unusual.

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[Photo shows Fey delivering a WHAP to the Cat Dancer.]

Then she got me to move it all over the couch while she chased and scrabbled and leapt into the air like a kitten. Her accuracy was way beyond usual and so was her interest. She stood on her back legs and whapped it again and then worked her two front paws in a rapidfire back and forth motion until she had to sit down. Then she did it again. And again. And flopped onto her back to scrabble at it from that position and just kept going.

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[Photo shows Fey on her back following the Cat Dancer with her eyes while her two paws are bent into different stages of grabbing at it.]

When I offered her the second round of fish flakes she nipped me (with a “HEY don’t stop now!” sort of look about her) and went back to chasing the toy everywhere until I was finally the one who had to stop from exhaustion.

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[Photo shows Fey lying on her side and attacking the Cat Dancer with her claws out.]

When I first bought the PetPocket I had figured it would be better than sitting at one particular window all the time, and that maybe it would fuel her imagination for future play. But I never expected it to be this extreme. Her play suddenly got far more complex, lively, and strategic. And I could tell she was saving up imaginary small animals in her head to hunt back home with the cat toys.

And today has made it clear things still work that way for her. She was nearly doing backflips and probably would still be playing if I weren’t worn out. She hung out in the living room for awhile hoping for more, but has come in and curled up next to my head now that she realizes I’m not going anywhere.

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[Photo was taken seconds after the previous photo. Fey is lying on her side. The Cat Dancer is near her belly. She is reaching for it with both front paws, and has her mouth open to bite it with her fierce white fangs showing.]

If you want more cat blogging, AnneC has done a great post on finding out why Nikki (an 8-year-old Siamese) was doing a bunch of things that seemed to make no sense. I am already liking her new cat blog Felines Are Wonderful a lot.

Apr14

Feline Ethics, Part 2: Avoiding Arrogance

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This is the second in an ongoing series of posts about feline-human ethics. The first post is Dealing with cats, part 1: What is Respect? The current post is on the topic of avoiding arrogance. The post that’s currently planned as the next post will be about the power humans hold over cats.

Human arrogance towards cats frequently goes two apparently opposiite directions.

1. Cats are like miniature humans in every way. They understand every word of what we say, are motivated by exactly the things that motivate us, and if they don’t respond exactly how we expect another human to respond then they are just being stubborn, callous, cruel, manipulative, etc. Any attempt to say otherwise relegates cats to the realm of dumb animals.

2. Cats are totally unlike and inferior to humans. They do not understand a single word of what we say, cannot love, cannot reason, are not self-aware, etc. They see us as food sources and nothing more. Any claim otherwise needs to be rigorously proven in a laboratory setting, and is probably a misunderstanding of basic instinctual behavior.

The first approach is arrogant because it comes from a tendency to view the world, and especially cats, as a reflection of humanity. So it views respecting cats and seeing them as human as if these two things are synonymous. The second approach is arrogant because it views certain traits as exclusive to humans (or at least to “advanced” animals). It also, like many false ideas about cognitive disability in humans, views it as “scientific” to start from the assumption that cats lack certain abilities and demands absolute proof of the presence of those abilities before it will believe in them. Whereas for “normal” humans the preesumption is that we have those abilities.

From my standpoint those views are two sides of the same coin. The idea they both stem from is that humans are superior in certain ways. It’s just that one solves the problem of respecting cats by giving them traits identical to humans, and the other just doesn’t bother respecting cats and assumes that only humans have traits that are common among many species, cats included.

Often someone who holds one of these beliefs will assume that the other belief is the only other one possible, so that if you doubt one you must believe the other. If you doubt the first one someone will think you believe cats are nothing like humans and are overly wedded to the biases of many scientists, and if you doubt the second one someone will believe you’re engaging in overly sentimental anthropomorphism.

When most people think about cats, they see them as having a life that is simpler than our own. A little life that can be contained inside the bigger concepts that humans have. Emotions are like ours but fewer of them, thoughts are like ours but less complicated and not as many, and so forth.

This is not a useful way to look at the lives of cats. They are not miniature humans, and they are certainly not like humans but with certain aspects blunted, removed, and simplified. They are cats. They have their own complex way of relating to the world and each other. They have their own emotions which they feel according to their own values. They have things in common with us, but it’s dangerous to assume either identicalness or that they are just limited versions of us.

So when you think of cats, have some humility. Understand that there are more aspects to their way of doing things than humans can even perceive, let alone understand. This doesn’t make cats innately mysterious, it just means that we are working with different bodies, sensory organs, and brains. Even humans with the best sense of smell have nothing on cats. Our visual system is set up totally differently, not only can we not see in low light levels but our perception of motion is nothing like a cat’s. These are not little differences, they shape cats and humans into very different beings. As humans trying to understand cats, there are just flat out things we will only comprehend the vague shape of, and others we will never guess.

Be excited over these differences rather than trying to think of cats as inferior or even simpler beings. This is not to diminish what we have in common either, just an attempt to avoid making them into lesser beings just because they are different ones.

It is also important not to think of yourself as a Cat Expert. If all the stories you tell others or yourself contain phrases like “good with cats”, “a way with animals”, etc., then you are headed in the wrong direction entirely. You may have an affinity with cats — I have always found them easier to relate to than humans — but the moment your self-image depends on being right about all matters cattish, you are doing the cats a grave disservice. Because once you enter that frame of mind, you will begin to delude yourself and forget that you can make mistakes. The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. And ‘people’ there includes cats.

Whenever someone meets Fey and begins by saying they are ‘good with cats’ or similar, I try to convey enough watchful alarm in my body language for Fey to pick up on it and get on the alert herself. (Such people never notice this body language in either one of us.) Some things I have seen such people do:

1. Grab her and find a way to hold her where she knows she can’t fight. At that point she gives up (but looks terribly uncomfortable) and they tell me, “See she likes being held after all if someone who is good with cats does it”.

(I have even seen mention of that one in a better than average book about cats. But most cat books don’t mention it or other ethical issues at all, except sometimes to reassure humans that whatever decisions they make for cats are the right ones.)

2. Try to do whatever I just told them not to do. If they succeed in doing it without provoking a major response, they assume she is okay. If they do provoke a major response (hissing, spitting, tail lashing, ears back, clawing for instance) they go “awwww what a cute playful little kitty cat” and make me want to go at them with my claws out.

For example, Fey has some kind of condition affecting a particular nerve going to her back right leg. The vet said she had never seen a cat so thoroughly indicate that the problem is a particular nerve and not others. I tend to tell people to avoid her entire back end. On good days she will initiate touch in that area, on mediocre days she will allow touch but stiffen and look uncomfortable, and on bad days she will indicate pain in every possible way and defend herself by any means necessary.

Some really egotistical people will, upon explanation of this, proceed to grab her by the exact body part that hurts in order to try and prove they are Special People Gifted With Animals who can touch her there without provoking a response. And even if she responds by mauling them, they Dont Get It. At all. No matter what happens, they especially don’t get that causing another living being intense physical pain on purpose to prove that they are a special good kind of human only proves that they are an especially terrible, insensitive, and cruel kind of human who ought not to be allowed within a mile of a cat.

(I have also seen these sorts of people at the animal shelter. Fortunately they get thrown out pretty quickly because, among other things, if an animal scratched someone they have to be put in isolation for a long time which is horrible for the animal and everyone wants to prevent it. And because the people who work there actually care about animals.)

3. Read all sorts of bizarre and obviously false things into her behavior because they just can’t possibly handle the idea of not knowing what some action on Fey’s part means. Which in turn leads to really pissing her off eventually.

4. Use their “knowledge” about her as an ego trip or power play with me or other people.

5. Do any or all of these things to me as well, because lots of people who view themselves as Good With Cats also view themselves as Good With Autistics (or sometimes Good With Nonspeaking People). And they especially love to do it in situations where I can’t do anything about it. Such as get me in a situation where I can’t respond well and then harangue someone for ‘upsetting me’ or something when nothing of the sort has even happened.

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse. It doesn’t matter if everyone around you comments on your gift with cats, your way with cats, your being a cat whisperer, whatever. I ignore such comments if I get them. I have a close relationship with a cat. Not special powers. You should never ever let praise go to your head. No matter who you are, your ability to make grievous mistakes when trying to understand another species is an absolute given. Until you understand this, avoid cats.

And if you have either thought “This part of the post doesn’t apply with me because I am too good with cats to make serious mistakes,” or if you respond to other cat lovers admitting to serious mistakes by either thinking or uttering “I am so good with cats that I could never make that level of mistake”? That goes double for you. I have a deep and rewarding and loving two-way connection to Fey that is more detailed in our understanding of each other than any other relationship, human or cat, that I have ever had. And we both make mistakes and have misunderstandings every single day. If you think that doesn’t happen you are fooling yourself and setting yourself up to harm the cat.

The other direction arrogance can go is in assuming there is no actual harm in making massive mistakes because it’s just a cat. Or worse, that because the cat can’t tell anyone what you do, it is really okay. I have only ever got one person to admit that last one. But as someone whose ability to communicate in standard ways can come and go, I have watched what I thought were decent people transform into assholes many times the moment they thought I was either unaware or unable to tell anyone what they had done. And if it was bad for me it would be worse for cats.

I don’t really know what to say to all that. I know people who think if someone purportedly can’t understand what’s happening then cruelty isn’t wrong. I know some peopleonly care about being caught doing wrong, not about doing wrong itself, because such people have done awful things to me when I either couldn’t tell anyone or wouldn’t be believed if I did. But I know that each time people play out such attitudes on cats, the cats suffer.

Cats also suffer when treated like humans in cat suits. They end up being punished in ways that feel like a random attack from nowhere for no reason. People do things that are polite to humans but terribly rude to cats. And cats also suffer when people assume that things like love are too human for cats to fathom. Working across species is even harder than working across cultures in many respects, it’s hard to know what’s exclusively human and what we share with other animals. And there are things we may never know.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. Be alert to signals that the cat doesn’t like what you’re doing, and don’t laugh them off with “awwww aren’t we feisty today”. Treat the cat as an individual and conscious being that you are getting to know, not as a human or a mindless automaton. Keep your ego out of the way. And above all, be aware that despite differences in species, you are dealing with someone (not something) who is capable of feeling love, physical and emotional pain, anger, joy, fear, and many other things. Treat them accordingly.

Fey on my bed

The photograph is of Fey, a grey cat with ticked fur and some white markings. She is lying curled up on a foam mattress on top of a hospital bed tilted slightly upward. Her face is at the top, in profile. You can see the dome of her eye, with a large black pupil underneath, her eyebrow whiskers pointed straight up, and a big triangular ear pointed directly at the camera. The focus becomes fuzzy towards her tail, which is curled up and around. You can also see the shiny bedrail with some notebooks behind it. The mattress she is laying on is yellow memory foam with a pale green bedsheet part on and part off it. The foam is roughly the same shade of yellow as her eye.

Apr11

On growing up with strange sensory reactions, and the difference between passing and being passed off.

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In discussions with other autistic people about how other people have reacted to us our whole lives, I recently realized another thing that makes me different from some other autistic people (I honestly have no clue whether it’s most or only some). Which is in my reactions to my surroundings.

A lot of autistic people who, like me, were assumed (rightly or wrongly) to be anywhere from somewhat to highly capable by many people during our childhoods, seem to have something in common that I don’t have: They were most of the time a combination of several of… stiff, unusually formal, considered “dweeby”, reserved as far as interaction with their physical surroundings yet obviously “engaged” to a certain degree, and in general… lots of similar things I don’t quite have words for.

I was considered some of those things some of the time. But I’ve noticed some people assume that’s how all autistic kids who were regarded as highly competent tended to act. And they leave out of their calculations a lot of things that were true of me.

Yes, I was socially awkward, had meltdowns and shutdowns, and lots of other stuff. But I was most of the time very, very involved in my physical environment in all kinds of ways that made me stick out in totally different ways than many other autistic kids did. Note that it wasn’t all of these things all of the time. It was at least a few of them most of the time at minimum, and when I wasn’t hiding as well it was more than a few nearly all of the time.

I would sniff things. Books, pencils, wood of all types. If I saw a cat I would get down on all fours and politely (in the cat world) sniff their noses. I would sniff rocks, tanbark, metal, rubber, computer and TV screens, and many other things I came into contact with. Not to mention picking my nose and sniffing the contents (no I have never been able to stop no matter how much teasing or reprimands happened or even injury to the inside of my nose by peeling the lining off, it’s like trichotillomania, it’s not that easy).

I would also grab things and stick them really close to my eyes, or wave them around in the vague vicinity of my eyes (I have good peripheral vision so this means anything from just in front to on the sides). I would wave my hand in front of computer monitors. I would do things with my fingers just to watch them. I would spend hours watching ants or water (which I might also get my hands involved with) or lots and lots of other things involving getting things really close to my eyes. And chasing dust particles. Not to mention doing a very intense purr-like noise that jiggled my eyesight up and down.

I also did elaborate things with clothing, hair, and jewelry. Not for the purpose of decorating myself for the sake of others, but for the sake of being able to carry around things I could either grab and look at, or see anytime I had a mirror, or (in the case of braids) run my fingers over. This stuff wasn’t an enactment of a social ritual (which is good because sticking earrings and pins throughout your hair doesn’t get you anything but laughed at) or for any reason external, it was entirely so I could have lots of portable stimtoys. I could grab the necklaces and stare at them or suck on them, ring my bell necklaces in my ear, stare at, smell, or suck on my paisley shirts or busy-patterned skirts, run my fingers over coiled braids or other jewelry, or stare at the whole mess in the mirror.

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(The photo shows me sitting in between my two brothers, in my brother’s room, with lots of jewelry on, staring at one necklace or similar object.)

I also had some visual phenomena I would get really absorbed in. I see various patterns that probably range from retinal lights and afterimages to migraine auras (both my parents get migraine auras without the headache) to the occasional seizure. But I would get totally lost in that stuff, and find patterns in it the way people do with clouds. I got sent to at least two separate counselors (one in an academic summer camp and one in my brief attempt at high school) for staring at walls in my free time in order to watch that stuff. Other kids just used that as an excuse to do things like wave their genitals in my face to try to get me to stop (it’s amazing what people will do to you for the crime of not appearing to pay attention to them, even when they make it clear you’re weird enough they don’t want your attention).

I was constantly sticking things into my mouth long after that phase is over for most people. Not just pens or pencils either. I chewed sets of rubber jacks balls to the point of really embarrassing my mother once when someone caught me sticking several in my mouth on video. I did this the most often before puberty but I did it after too. I was really happy when someone gave me different lengths of aquarium tubing when I was nineteen for the express purpose of chewing. I chewed and sucked on my own skin, too, hard enough to leave marks. And my hair. And ran the outsides of my tongue over my molars over and over to create a sour taste. And had a metal necklace I sucked on and spat out over and over until the outer gold-colored metal wore off.

I also liked textures like velvet, cat fur, varnished wood, anything large and cold and flat, etc. and pressed anything from hands to cheeks to large amounts of my body onto them, or rubbed them.

I had a weird thing I did in chaotic environments like school dances where I would frequently stand right by the speaker because even though it was earsplittingly loud the music was more orderly than the crowd noises. (At first I’d dance if asked to, or outright find someone to dance with if the song was “Stairway to Heaven”, but later I found it easier to just spin in circles.) I also hummed, whistled, and sang, sometimes all in rapid succession, and had a single toned hum I would do by keeping my ears clicked so internal sounds were loudest and then humming to drown out other chaotic noise. Got pulled out of school assemblies for clapping my hands over my ears over and over to create a rhythmic pattern to people’s voices or music. Played single songs until I wore out several tapes and tape players.

And this is not to mention the spinning, which I did at every dance starting just after seventh grade instead of running up to the speakers or trying to dance with people. And which I also did plenty of without dances as an excuse. And the pulling out all the paper towels, and all the soap, from dispensers, then smearing the soap all over mirrors. And climbing things. And assorted other things that were more actions than any one sense being explored.

And doing something kind of hard to describe. In new situations my sensory input seemed more and more chaotic. (Been planning a post on something related to that too.) And after awhile instead of panicking, I’d started embracing a sense of total randomness. This is the same sort of thing that could make a person really lose it in new situations, but it’s sometimes possible to sort of ride it out like some kind of funhouse ride instead of becoming tense or fearful. (Or as an autistic friend of mine puts it, “As long as there are shopping malls, I will never need LSD.”) This is yet another thing you never hear about because it’s assumed “resistance to change” is just The Way Things Are for all autistic people instead of being one of many possible responses to a more central experience of having things become really confusing the more change or new or unexpected input there is.

And when I did talk about my special interests they were about things like fractals, chaos theory, alternate realities, and psychedelic rock bands. Or any and all kinds of surreal or nonsensical things (including going around saying weird things in several languages that I couldn’t actually speak except to say weird things in). (The embracing of nonsense being one more way to deal with the speed of things changing around that time.) This… did not help.

Then there was… the other stuff. The ways I seemed cut off from the world instead of overinvolved in the wrong parts of it.

Part of that was due to my being heavily tuned into internal sensations. Like when I would sit down cross-legged, pull my skirt across my lap, stare at it, and proceed to vividly replay in my head scenes from Red Dwarf or Star Trek (other times it was listening to white noise and picking out single frequencies to replay songs I had memorized). Other times it was just something like pulling my hair over my face like Cousin It (wonderful to stop seeing lots of overloading stuff), or sitting around with my eyes shut. Or what my parents just called “Staring” with a capital S, where I’d basically sit there and appear to be staring at nothing at all (which could range from overload to replaying things in my head to just some coincidence of my eyes and facial expression, or could even be getting lost in various visual oddities I discussed before).

The point of all this? When many people picture an autistic kid who went undiagnosed until early adolescence, they seem to picture the formal stiff thing going on. They don’t picture the kid who involved herself in all kinds of supposedly inappropriate sensory activities, and seems physically pulled towards these things as if by gravity. But that was me.

I didn’t do these things every second of every day. But I did them enough to attract all the wrong kind of notice. While some people called me a nerd or a computer or those usual insults, much of the teasing I got revolved around being very, very attracted to physical sensations of all kinds, or else looking very, very tuned out. There’s a reason my mother insists on comparing me to Luna Lovegood rather than a more stereotypical nerd (or to, say, Ernie Macmillan, who was so formal he sounded pompous).

Yeah I did get called a nerd But mostly I got other things. When you’re younger and you behave this way, you become a weirdo, alien, psycho, crazy, tard, space case, elf (yes that whole fantasy started because someone called me one — if I could pick a Tolkien creature to compare myself to I’d be an Ent) etc. When you get a bit older you get called even crazier. And then eventually everyone and their dog thinks you’re on drugs.

This is one reason that I question the entire concept of passing. I rarely spent five minutes around other children before they figured out I was different. Often it was more like five seconds. Kids weren’t generally picking up my intellect or nerdiness (they might pick that up later but not immediately), they were picking up my strangeness. Much of the time they said so quite openly and as we got older they were trying really hard to explain why I was strange. But I was always strange, there was never a point even when I did my best attempt to “behave” that this was ever in question. Even when neuroleptics drastically tamped down on my ability to explore my environment in those ways I could expect to wait seconds before I was pointedly and often out loud judged as some kind of Other. Even among kids in mental institutions where the rate of neuro-atypicality was higher, I only very occasionally connected with anyone and it was always their doing, others just either shunned me or found ways to do harm to me.

Weird thing is even though I heard all about being strange my whole life I always underestimated my strangeness. I rarely connected all the dots in others’ reactions to me. I knew I was different but since I couldn’t imagine how all the things I did looked to others, I assumed I was “normal enough” largely because of that and because I was always around myself and therefore found myself… not boring exactly, but like I was used to me. The same way I never knew my autistic brother stood out that much even though he did (although more in the stiff/nerdy way than the sensory/strange way, we are very different people).

But once I put the dots together? Passing doesn’t make sense. What happened was people saw every single thing I did and then since they didn’t know about autism they formed other explanations. So I was crazy, or on drugs, or wanted attention (why do so many people accuse others of wanting attention when the actions prompting it are entirely not focused on other people at all, while they don’t tell people that starting conversations is attention seeking even though it is???) or any explanation at all they could come up with. Sometimes several at once.

As I’ve discussed before, the drug assumption meant I have been both asked for (???) and offered pot, acid, shrooms, DMT, ketamine, speed, mescaline, harmaline, and assorted really obscure “natural” hallucinogens (I did not take more than three on that list, and only after being accused of it got me curious). This took no effort on my part, especially when attending a school so well known for drug use that it made a top five list of drug schools. All people saw was a strange girl dressed like a hippie who did lots of odd things, looked spaced out, and reacted to all kinds of sensory input in a very raw sort of way that often made me respond more to texture and pattern and color than to the socially agreed upon nature of the object. Plus I was fun to get stoned because it made me have even more sensory processing trouble and ratcheted up my anxiety so much that it was easy to manipulate me into doing amusing things like jumping out windows so people could laugh. (One of my support staff has another client who has a very severe cognitive
impairment. I was telling him about this and he told me she gets the exact same crap from her neighbors.)

Another thing that happens when people form these explanations is they begin picking up on irrelevant details that confirm their explanations while blocking out information that conflicts with their explanations. Because of my reputation for drug use, people would claim to smell marijuana coming out of my room whenever I burned incense (I never did that in my room). Have allergies that make your eyes red? Must be stoned. Have naturally large pupils? Must be on acid. Have trouble bathing or washing clothes? Drugs make people not care about that. Have fluctuations in your abilities? Must be based on when you’re high and when you’re not. You can’t win around this kind of fallacious thinking.

Kids who pass don’t get accused of being on drugs by everyone from children to teachers from the age of twelve or thirteen onward. Kids who pass as nerdy or “just gifted” don’t get ostracized and accused of being both on drugs and crazy, or sent to the counselor, when they go to a summer camp filled with nerds who are mostly classified as gifted. Most “just gifted and nerdy” kids thrive in those environments and tease the kids like me who are clearly odd for other reasons. My best friend met me in such a place when we were twelve after seeing me spinning by myself, asking someone who I was, and getting “That’s Amanda. She’s crazy.”

Nor do kids who are passing really well have it assured that they will be only given single rooms from a certain point on so as not to alarm their roommates with their strangeness (yes my roommates complained about rooming with a “crazy person” or “weirdo”). Even in mental institutions. (And kids who pass really well certainly don’t get singled out as strange in those places.) This is not passing. This is being flagrantly strange and having it bother people enough that they try to think up all kinds of reasons to explain it to themselves.

When most people explain things to themselves, odd things happen. They don’t see what you’re doing. They see their explanation. They see “crazy”, “high”, “stupid stunt”, or whatever they have explained things as in their minds. And if they have to have their expectations disturbed enough to explain things to themselves, then you are not passing.

I know a lot of people that things like this have happened to. Even people with purely physical impairments. A woman I know has muscular dystrophy and when she began hanging onto the walls for balance, people explained it away as attention seeking or anxiety induced. That’s the exact same sorts of explanations (with the addition of the ever present drug thing) that I got with a much lesser known autism-connected progressive motor impairment that caused me to freeze in place, be unable to cross certain barriers easily, or lose the ability to speak.

I once froze for a solid ten minutes, with (as I heard those around me noting) fixed dilated pupils pointed straight at a bright light, on a high school field trip. Nobody told my parents. People figured it was drugs or anxiety, and everyone was sort of pointedly avoiding the subject (and avoiding me) the rest of the trip, treating me like I had done something unspeakable. I frequently had the same thing happen in college and was said to be on drugs (never happened when I was actually on them). Happened in the psych system and was called psychotic or dissociative or just left unexplained. Happened around new agers and they insisted I was either astral projecting or somehow being very spiritual. The same thing happened to me at an autism conference, and someone with the same movement disorder told me the journal articles to send to my doctor. I did and he recognized it immediately and diagnosed me with that condition.

Is that “passing”? No. It’s “being passed off as”. It’s people seeing a thing, being uncomfortable, deciding on an explanation, and coming to remember the explanation more than the thing itself.

Similarly, now that that and other conditions have me using a powerchair full time, all the traits that had people who just saw me walking around thinking I was either autistic (if they knew anything about it) or intellectually disabled, the powerchair has become their explanation for all those traits. So now I’m back to being considered purely physically disabled by some people, which has led to overestimation rather than underestimation of my cognitive abilities.

I can do one particular thing throughout most of my life and have it explained in different ways depending on age, clothing (hippie clothes, school uniform, “regular” clothes, sloppy clothes), location (regular school, college, special ed, institution, apartment, at home with my parents), haircut (messy, combed, long, short, parted in different ways, nonexistent), range of deliberate facial expression (less or more limited due to the motor impairments), and a zillion other factors. But I’m the same person and my reasons for doing whatever it is have remained constant my whole life. I have seen kids doing things like eating paper or lying on the floor, and if they’re considered “gifted” then it’s eccentric or attention seeking, if they are considered druggies people figure it’s the drugs, and in institutions or special ed it’s because they don’t know better. But I bet the reasons for doing it are the same regardless.

But as someone who was a strange kid, and paid the price for being a strange kid, I am really uncomfortable with the concept of passing. Passing would be if I never did the things I listed in the first part of this except in private. Something I only ever managed in part. Having people constantly bugging you and making things up about you because you do these strange things is not passing. It’s having people pass things off as something else. It’s having teachers accuse you of drug abuse until everyone believes it and you become curious. It’s freezing up and having other kids laughing and jumping up and down on top of you and going “see she doesn’t feel it”. It’s being singled out for bullying even among other “gifted” kids and “crazy” kids. It’s having “crazy” or “druggie” or “does weird things for attention” be the first words people use about you when strangers ask who you are. It’s having even people you thought were your friends comment gleefully and frequently on these topics as if you are more a source of entertainment than a friend. It’s having people shake you, kick you, wave their hands in your face, and make loud guesses about what’s going on, every time you lose speech. It’s that one guy who likes to come up to you and tell you what “everyone’s saying” about you. But it’s definitely not, ever, even when doing your best acting, being treated like everyone else. Which is what passing would be. Passing has its own set of problems. But “passed off as” is not passing.

The other point of this post is that I’ve talked to even a lot of autistic people who assume that there’s only two general appearances that autistic kids can take: Sort of awkward and stiff and nerdy or dweeby, or else completely cut off from people and constantly rocking and doing other stuff like that. And while I sometimes did both of those sorts of things, I think I was usually something different from either stereotype. Much of what made me stand out and get both teased and “passed off as” various things, especially both before and after the few years I reined it in a bit, was the way I related to objects around me, and sometimes appeared zoned out. Most of which has to do with how I process information in the first place. And while I know many others who were and are like this, it seems like even many autistic people can’t resist having their imaginations constrained by the main couple stereotypes. And I almost never hear this particular appearance discussed. Lest this become a third stereotype, I should point out that there are lots and lots of different ways we can appear, and that a single person can appear different ways at different times. It’s just important to avoid stereotypes. They don’t help.