Monthly Archives: November 2009

Why I never expect to be right


A friend of mine read my post on my reaction to the blog carnival theme of intersectionality. She and I have fairly similar thought processes, and both arrived at the same conclusion about intersectionality as a concept. (That is, that it’s a fairly abstract theory-land construction of a very real-life situation and that we preferred practical descriptions to using an abstract term for it.) However, she arrived at the conclusion instantly, and it took me a whole post worth of muddling before I figured it out. And today I finally realized why there was such a time discrepancy in our reactions.

The fact is, I come at the world as if everyone knows more than I do, thinks better than I do, understands more than I do, and is generally in all ways superior to me. It’s a deeply ingrained unconscious reaction and has nothing to do with reality or even how I think about these things (I don’t even think that kind of inferiority/superiority exists. But that’s how I think.

Don’t tell me I shouldn’t feel this way because people who were classified as gifted children/child prodigies never feel this way. It’s not true. First off, I never knew I was classified that way until (ironically) I was at an age where I no longer even tested that way (which I wouldn’t know for many years to come). Second off, I doubt the knowledge would have given me the equally ridiculous sense of superiority that it gave many children around me.

Why? Well look at it through my eyes: I was in a world where everyone but me seemed to know sone important thing that I didn’t know. My receptive language was barely there, and I relied on patterns and the keen observation of non-word-based aspects of the world around me to navigate the world. I was good enough at it that nobody guessed the extent to which I didn’t understand things, but bad enough at it that I ended up making and wearing a fake nude suit out of construction paper in response to finally watching the behavior of other people to try to piece together what was wanted of me during an assignment that was due that instant that I hadn’t even picked up on as existing. (The kid I was partnered with kept drawing attention to his hat, and lots of the paintings in a book we were supposed to give a presentation on were wearing hats. Lots of them were nude, too, so I stood in front of the room covered in orange construction paper reciting fairly random sentences.)

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

Anyway, despite my talents, I never really compared them to anyone else or even knew I was ‘supposed’ to. I only knew that I was outside this intricate dance that everyone else seemed perfect at. So when I did learn to compare myself to others, I only noticed my faults. And as I got older, and the gap widened between my abilities and other people’s expectations (whether the generic.l expectations of someone my age or the inflated expectations of ‘gifted’ children), I only became more convinced that I was uniquely defective and destined for some sort of hellish life of the sort that I knew ‘had to happen’ to people who didn’t measure up.

This has resulted, even now that I understand how nonsensical such comparisons and hierarchies are, in a deeply held assumption that if lots of people write about something I can’t seem to write about, then it’s because they know something I don’t. I almost never think that my way of understanding things is real or valid. So I frustrate myself by bashing my head on a concept for (at least) hours before realizing that my instinctual reactions to the concept have merit. And even when I figure out they do, I am sitting there just waiting to hear that I am just ‘too stupid’ to contribute anything to the discussion.


To be finally free from entanglement.


It has been a long time, longer than probably anyone but my closest friends could guess, since I have felt comfortable being on the Autism Hub.

It was okay at first. It seemed to be similar to a blogring (anyone remember webrings?), a place where links to various blogs were collected by someone I barely knew who happened to like those blogs a lot. But then it became a community.

Online communities can be good things, but they’re complicated. They seem to sprout cliques (which start out innocently as groups of friends then harden their walls when conflict occurs), feuds, and drama faster than my head sprouts hair. Often faster than I even notice their existence. And then things get even more complicated. People have arguments that mysteriously seem to line up with the same sets of people on each side most times no matter the topic. Other people start insisting that since we’re all in the same community, we’re all really on the same side — since we supposedly all want the best for autistic people (even if it’s clear we don’t all, and even when people have totally opposite ideas of what “the best” is). Communities of this sort often come with massive strings attached.

I do want to make a few things clear though: I have friends in this community. I have people I agree with in this community. (Those two groups are [gasp] not identical! Would that more people understood that.) I have people I respect greatly in this community. I don’t respect them any less for remaining there when I leave, that’s a personal choice everyone has to make for themselves.

I am leaving the Hub (whenever Dave gets my email or reads this) but not leaving for want of those things.

I am also not leaving because I have changed my views on autism or disability. I am leaving in part because of those long-held views. Not leaving because of any recent events, in fact I have remained oblivious to most events recently due to lack of time and energy (if had more energy would left sooner). Certainly not leaving because of any one event or person.

Why am I leaving then? Half of it has to do with the complications of this kind of community and a desire not to become entangled in the strings attached. And half of it has to do with the long nagging of my conscience and ethics.

Review of something often point out: I am not primarily an autism blogger or a neurodiversity blogger, not in my mind anyway. I am a person who operates from various (not widgeted so there is no good name for them, this not being a putdown for widget-users but my inability to do more than rudimentary widget-work) ethical principles and applies those throughout my life, some of which involves blogging about events in my life and the world around me, from that particular point of view.

I usually deal with disability rights topics. I have noticed that people with cerebral palsy who blog from disability rights standpoint about events affecting them and other people with CP are not called “CP bloggers” at anywhere near the rate that autistic people doing the same get called “autism bloggers” (in fact when I google “CP bloggers” I find mostly stuff about Club Penguin, whatever that is). On the other hand, I can make an entire video dedicated to a girl with CP trying to say the way she and I (and many sorts of disabled people, and nondisabled people who happen to come from nondominant cultures, etc.) have been dehumanized on the basis of our way of communicating and interacting with the world, is incredibly wrong. And end up on television represented as if the film is about letting people into “my world” of autism (which is something Sue Rubin said about her film but I never said about mine, in fact voiced strong objections to that whole idea). [headdesk]

So to me, I am primarily an ethical blogger, or a political blogger, depending on your definition of political. Possibly even a disability rights blogger even though that’s still not the entirety of my point. Not primarily an autism blogger. So while I do happen to want the best for autistic people that is too narrow to be considered central to my reason for blogging or my de facto membership in a community that used to just be a blogring at the time I joined it. And I guarantee that my idea of what’s best for us is totally different than a lot of what I have seen on the Hub.

I have seen ableism running rampant all over this community. I have seen those who try to counter this ableism, be they blunt or diplomatic, treated as if just making trouble or being mean. Although the blunt ones are treated worse, in yet another stunning display of ableism (gee, autistics, blunt? Who would figure?).

I have seen vile hate speech be more readily allowed on parts of the Hub than the non-hateful speech of autistics (and even some allies) who simply disagree with people in those parts.

I have seen all manner of pseudo-allies as well as fair weather allies who retreat into their privilege and leave autistics hanging when the going gets tough.

I have seen people who are on the Hub for primarily scientific reasons whose ideas about actual autistic people range from inaccurate to degrading and patronizing. I have seen parents do the same. I have seen autistics get treated terribly for pointing this out. The old power structures — professional over parent, parent over autistic (recognizing that this is simplified because any one can also be any of the others) — still hold strong on parts of the Hub.

I have seen a lot of medical model ideas floating around. I have seen people treating the education of autistic people as if it is therapy. Even people promoting so-called treatments of autistic people, that are identical to ones some of the autistic Hub bloggers were harmed by as kids, but if we say something we are either ignored or patronized and treated like we just don’t understand.

I have seen “biomed” become the latest in a long series of different “bad guys” who are supposedly the opposite of “the neurodiverse”. Even though there are “biomed” parents who do a better job of understanding and fighting the societal forces that make the world such a nasty place to be autistic, than some Hub parents who seem to all but embrace those forces.

(I know some biomed stuff is terribly dangerous and needs opposing. But on the Hub it’s turned into good guys and bad guys and I don’t believe in good guys and bad guys. The world is more complicated than it looks in this community sometimes. I don’t like being in close proximity to these distortions.)

And for that matter the whole cure topic gets oversimplified the same way. While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did. I have worked right alongside people who want cures (some of whom even did “biomed”), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on. And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

And I have seen a lot of personal fighting that may once have had a point but now seems to just go endlessly in circles. If I am going to fight for something, I want it to be something that at least makes progress in a useful direction. Comes from not having much energy to spare.

I am not interested in going into who did what. I don’t even care who does these things, I just care that they are being done. I won’t answer or print any comments going “Is it me?” or “It is me and you are attacking me.” Or anything similar. That is just point-distraction.

I still have limited time can spend on the Internet and limited time can read and write on blogs. Have found that I no longer even wish to allow the pretence that I am part of this community. General-sense disabled and autistic communities, maybe, this particular little community, no.

Again, my viewpoints haven’t changed, my friendships haven’t changed, my people respect (including some I have criticized) hasn’t changed, and I don’t even think would necessarily be a good thing if the Hub didn’t exist. I just had to get out, for reasons that are entirely my own.

I know this decision is the right one because it feels like freedom rather than entanglement. It feels like being able to think again. It feels like breathing after long suffocation.

Or as Anne put it in her blog post about cutting her ties with the transhumanist subculture:

And I don’t have any problem being friends with someone who still calls xyrself a transhumanist, or engaging in respectful discussion with such a person. With very few exceptions (e.g., Nazis, Raelians, Amway salespeople), I don’t care a lick what someone’s associations are — I am very much about taking people on their own terms, probably to a fault.


I’ve just realized that I don’t owe anyone anything for having the interests I have, nor do I need to be a “member” of any transhumanist organization in order to have the kinds of interesting discussions that I’ve always been interested in having.

If that’s somehow not okay with you — well personally I don’t care, but you might want to seriously examine your thinking. I can’t survive cognitively in environments that force everything into false dichotomies, and nobody should feel hurt, slighted, or bitter because of my doing what I need to do for the sake of being able to actually use my brain.

And that says it all.

Cat Love


There is no joy greater than the purring of a cat 
(No not a cat. This cat. Cats are not interchangeable.)
There is no joy greater than the purring of this cat  
When she curls around my heart and purrs
And I purr my silent purr back
She taps out a soft rhythm of her cheek on mine
Once, twice, four times, eight times
Then rests it gently on my face for an hour
Then she shifts, and flips her head upside-down under her arm
The purr getting loud in the stretch 
Then buries her face in my neck for a while 
Before bringing it back to my cheek
And there is no moment where pain matters less
For there is no joy greater than the purring of this cat  
When she curls around my heart and purrs
And I purr my silent purr back 

(Dedicated to Fey.)

a closeup of my face with my eyes closed and a grey cat face with a spot of white resting her cheek on mine

We’ve been doing this several hours a day lately, including right now.

For a lovely illustration of a purring kittypile, see the following YouTube video by Anne of her three feral rescue kittens. There is no transcript or captions but maybe someone capable of doing so could do so in comments (including the purring). The most relevant sound to me is the sound of three kittens purring in unison in a way that sounds like an amazing cat harmony.

This is not the post I started out writing.


The next disability blog carnival’s topic is intersectionality. Intersectionality is one of those words that does not slide completely off my brain, the way ‘monotropism’ does, but slides partially off my brain and is not a word I would ever use except in paragraphs like this one.

It is a word normally used by people within a very particular way of looking at oppression. And among people who may not be exactly within that category, but who take the word from those who are. I don’t even know the word for that category, although I can usually recognize it by the sorts of words it uses. As long as it is not too abstract, I greatly appreciate reading from things in this category. But I am not myself someone who can work within it (may have something to do with this post, which is in no way an insult to those who can work within it). Intersectionality refers to the way that being oppressed in more than one way at a time (such as being disabled and black and female) combines to make an experience more than just the sum of its parts.

I have spent all of the time since the blog carnival was announced, trying to write on this topic. The results in no way compared to some of the brilliant writing I have read from others. In fact, all they compared to were past efforts to write homework assignments I barely understood by plugging in words to a formula and straining my brain to the point of pain (rhyme not intended) trying to come up with more words to fill in the blanks.

I started out by listing the current categories I fall under when it comes to being subject to various forms of oppression: female, disabled, lesbian, mixed-class/poor, nongendered, and fat. Then I added a few notes under some of them.

1. (Disabled.) Specifically, I’m physically disabled, cognitively disabled, psych survivor/ex-patient/mad/etc. take your pick, and have chronic illness and chronic pain. All of which are sometimes lumped together and sometimes play out very differently from each other. And while these categories stem from the medical model, they also often reflect ways that even the political aspects of the disability communities have divided themselves, and thus become relevant as more than just medical categories.

2. (Mixed-class/poor.) Born middle-class, been poor by my country’s standards since adulthood. Because this has to do with disability, I am not the sort of fashionably downwardly mobile person I often read about who can always go back to the middle class or even the working class but chooses not to because it clashes with their values or wishes. I know enough from having talked to people who grew up poor and working-class that I’m quite aware I have plenty of middle-class privilege that can’t evaporate no matter what happens. My self-description as poor is not an attempt to erase that, but rather an attempt to convey the reality that I am subject to major classist oppression that will last the rest of my life no matter what choices I make. Permanent, involuntary downward mobility exists in the world, even if I’ve virtually never heard it discussed when people talk about classism. Which itself probably has something to do with the fact that disabled people are invisible, and that most discussions of classism seem to revolve around the struggles of the working class. And the fact that people expect class to be simpler than it is, either you are or you aren’t a particular class, when things are more complicated than that.

3. (Nongendered.) Neither cisgendered nor transgendered. Gender is a concept that, while I understand intellectually that it is greatly important for other people, is entirely absent and incomprehensible to me. I imagine that it must be some collection of aspects of a person’s identity that all cluster together in most people’s minds, whereas I’ve spent my life oblivious to how they are connected or why I would want to connect them, and innocently trampling all over people’s ideas of what it means to be masculine, feminine, or even any particular point in the middle. For more information, read Urocyon’s Gender, Sexuality, Identity, and Binaries or, if you can get it, the article “Growing Up Genderless” by Jane Meyerding in the anthology Women from Another Planet?

Then, I set about writing about how those things mixed around make life much more complicated. Most of the things I could come up with were the obvious: my status as what a friend called a “perpetual outsider” in single-issue, single-identity communities. Even in the autistic community, where I have found (unasked for and unlooked for) status, I have found no belonging. How could I, in a community where it’s impossible to go anywhere without hearing some other aspect of my life (even some to do with autism itself, since I am far from the right kind of autie) degraded, denied, and disparaged? Even the “status” has been given to a distortion of my life, not to who I am. And the same is true of the LGBT community, disability community, feminism, and all the others. I have only to walk into an LGBT community center to find a gay man who is inspired by my presence to tell me how he used to work in an institution where there were people who looked like me, where he would stand over the cribs of some of the inmates and ask (insert pained voice) “Why are you alive?” And who wants my sympathy for the agony he feels at the existence of disabled people. Seriously. This happened.

(For more on that kind of topic, see The Difference Slot, by elmindreda, who eventually left the autistic community over such experiences.)

The original thing I wrote was full of stories like that despite them just being the tip of the iceberg on this subject matter. And I grew more and more frustrated as I fit my writing into a formula that did not at all convey my thoughts. Then I decided I would rather write nothing at all than write what I didn’t mean. So here is what I do mean:

I can’t write a lot about intersectionality as a topic because I don’t ever not write about intersectionality as a topic. Every single piece of my life that I describe, is the life of someone who falls under multiple categories. I write about these things by becoming very specific and writing about things I do and experience. I write as one single instance of life and expect people to fill in the broader context on their own. And from that broader context, they can use it to think about situations that at first glance are nothing like mine.

The way I experience these things has no equivalent in words, that I know of. It is like being acted upon by a large number of separate gravitational forces that push and pull in a physical-seeming way. It’s possible to name specific forms of oppression that are recognizable to everyone, but the way I experience these things isn’t as simple as listing off sexism, ableism, etc. As with most of life, I experience a much higher degree of detail in these gravitational forces that push and pull on me, than there is in the words. So why divide them in the exact way that they are normally divided? Why say that there are six things, when you could say twenty, and why say twenty when you could say a hundred? These are just shorthand for the more complex forces at work in the societies we live in, and it is important not to forget that in these often hyper-abstract discussions. I understand very much why a common language is important, but sometimes it obscures as much as it communicates.

So I will continue to move through the world (and the bits of the world that are around me will affect me, and I will affect them) and write (when I can) about specific aspects of my life, all of which have something to do with this thing they call intersectionality, whether that’s the topic of the day or not. Because I don’t stop being all these different sorts of person, when I stop specifically naming them.



All of these articles are from one blog, flip flopping joy:

berries. blue.

The ABC Report about blueberry field abuse

up close through others’ eyes

Read those before responding to this post.

This is the first time in my life that MY community has been highlighted on national television. I mean…the place I worked. The place I have memories of. The place my body has memories of.

Not just “community” that I count myself a part of.

~has that ever happened to you?

It changes how you see things. Because you see yourself for the first time through the eyes of others. Up close. You can feel their breath on your skin. You can smell their perfume.

And you know what they think of you.

Not abstract you, not “identity you claim” you.


She asks, has this happened to you, and I reply, [utterly inadequately compared to what she wrote]:

Not identical — we’re from different communities, and the issues are different. [Hopefully it’s obvious what I mean by different communities, even though this isn’t about “community identities’, etc. I’m not going to add any more disclaimers though, or I’ll never be able to write this.] But similar.

Every time they find torture in institutions, and try to fight for pointless regulations that won’t even stop the obvious torture, let alone the day-in day-out degradation and dehumanization that changes and smashes and wounds you inside worse than any physical torture ever could.
Reading the detached and clinical reports [from the agency that uncovered the abuses], and the news reports, about institutions that I was in, some of which I was in at the time the reports were being made. Remembering what the real issues were and that nobody who writes the things ever gives a damn about them, or about those of us who lived there, or about anything other than us as a symbol of mute helplessness and things that happened to us that we accepted more than we accepted the worst things. It fills me with feelings so powerful I can’t even name them. And I cry. Or I pound things. Or I just lie there immobilized by the feelings. And I never know how to explain it to anyone, even though I try my damnedest all the time because I know with my whole being that this is what matters [and so few of us are talking about it where people hear, it’s so much easier to just forget, and so difficult to put a finger on]. (And yet know that many will discount me because I’m the sort of person who ends up in those places, after all. Not reliable. Not real.)