This is for the next disability blog carnival. One of the questions asked is “Is there someone whom you have met in real life or online who has had an impact on how you view your disability or disabled people in general?” This is my answer.

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How do I even articulate the ways my family shaped my views on disability? It’s a very mixed bag. And in saying what I’m about to say, I do not want to give the impression that my family is some kind of romanticized disability utopia. Far from it. There is plenty of misunderstanding, prejudice, and ableism to go around, just like in most families. Yet in being who they are, my family taught me a lot about disability without even knowing, without even trying. They taught me even despite the words that would sometimes come out of their mouths and the prejudice that led one family member to not allow me near his children unsupervised because I lived in a residential facility. There was something deeper going on underneath that even that kind of behavior could not fully eliminate or obscure. And since I generally see things like this from underneath, I learned lessons that nobody tried to teach me.

Most people in my immediate and extended family experience disability in some way. Whether it goes by the common classifications of developmental disability, psychiatric disability, chronic illness, physical disability, cognitive disability, or things that blur all these artificial lines, these things are practically everywhere in my family. I’m not exaggerating. I hate having to fill out forms in doctor’s offices about family history. I end up having to circle practically everything, and write in a lot of extras.

On the surface, various family members may either accept or reject the views society places on disability, and in many different ways. But underneath… underneath is where it gets really interesting.

Because the biggest message I got from my family, without any of them ever trying to send such a message, is that disability is inseparable from the human condition, from life itself. I look at us as a whole and I see an amazing landscape of human variation. I don’t see defective people. I don’t see people who never should have been born. I don’t see unpersons. I don’t see empty shells. I don’t see burdens on society and on each other. I just see people.

I was trying to explain all this to my father when he visited recently. It’s really hard to put into words. I brought up the people I’ve known who are the only disabled people in their families. I would never want to put up with the bullshit that some of them have to put up with. Not that my family doesn’t have its own brands of bullshit, but still. At least I can look underneath the bullshit and see that ever-changing landscape of people who are in similar positions to me.

They may or may not think about it the same as I do, but it’s not their thoughts that gives me an advantage. It’s their being. It’s who they are. It’s who all of us are, in relation to each other. Some things are deeper than words, deeper than thoughts. They make their way into the core of your being and connect you to your roots. Nobody can break these connections, not even if they want to. They transcend hatred, prejudice, bullshit, and all the other things that can tear us apart on other levels.

This means I was never prepared for the level of contempt for our very existence that exists in mainstream American thinking. That contempt is hidden behind discussions of how horrible and traumatic it is to have a disabled family member. I could never get into support groups for children of disabled parents, siblings of disabled people, and so forth. Because so much of what they say is all about the “normal life” they wish they had had. And they have all this resentment for the position they’re in.

I hear people say things like “I didn’t get to have a childhood because my mother was disabled” and I want to shake them and ask “What do you think ‘a childhood’ is supposed to be!?!?” But I know what it’s supposed to be. It’s supposed to be an entire world without people like me in it. We’re always described as barriers to the normal lives that people around us deserve. I can’t get on board with that. I can’t even fathom how that is considered a good thing.

Seeing how the rest of the society we live in viewed people like us was almost like a kind of culture shock. Even the worst of the disability prejudice within the family was nothing compared to what I found outside of it. Reading about the way the eugenics movement targeted families much like mine, in terms of disability, class, and race (during that era many of us were visibly mixed-race), makes me glad we escaped that fate, and horrified for those who didn’t. Of course, eugenics did play a part in the struggle my great aunt with an intellectual disability had in getting married to a man with a similar condition. But we were never systematically targeted as a whole.

Still, to this day the remnants of eugenics seem to be everywhere. There are people who think it ought to be illegal for anyone with genetic conditions to have children. Or that it’s a mother’s duty to abort a fetus found to be disabled. And that if people disobey this, then their children ought not to benefit from any kind of disability services from the government. What that tells me, is that people don’t want me to exist. They don’t want my family to exist. Any of us. They would rather none of us had been born.

I have trouble having those conversations. I have trouble believing anyone should be in the position of having to argue for their own existence. And people saying these things usually believe they’re being totally sensible and not acting from hatred and naked bigotry. They say my emotional reactions mean I can’t think clearly on the matter. If what they do is thinking clearly then I want no part of it. I can’t describe the pain, or the rage.

My mother once wrote to me. She had been reading things by other parents of autistic children. They said that all parents of autistic children think about killing their child at some point, and that parents who say they haven’t ever thought that even once, are lying. They said that no parent would deliberately have a child if they knew their child might be autistic. My mother told me that doctors had suggested she abort me before I was born. That she didn’t listen. That she’d always wanted me. That she wanted me to know that they had never, ever, not wanted me to exist. That knowing I would be autistic would not have changed anything. I cried. I cried because these people had made her feel like she needed to tell me that. I can’t imagine how that felt for her. I can’t think of it now and not cry.

A lot of people in mainstream American society seem to believe that they have some kind of absolute right for us not to exist in their lives at all. That it is only natural that we be taken out of our families and put into group homes, mental institutions, nursing homes, and the like. That it is only natural for us to be taken out of school and put into segregated special education classes or schools. That we be put onto government programs that are run in such a way as to make us an underclass below people who actually work for a living.

I never understood these “rights”.

When I was in special ed, I noticed something. I noticed that a lot of us had been taken out of traditional classrooms, because of excuses like “It would be too hard for the teacher to teach all of these different kinds of people,” or “These people are a distraction to the regular students and impede their learning.” And yet… here we were, in classes, together. When they bothered teaching anything useful at all, teachers had to accommodate our various ways of learning. We had to learn to concentrate in classes together with people who were supposedly too distracting to be in regular classes. We were people who supposedly struggled to learn or socialize the same way other people did. Nondisabled children were supposed to be really good at these things. If we could handle it, why couldn’t they? It didn’t make sense.

The reality was, that those weren’t the real reasons we were in segregated classes. We were in segregated classes because nondisabled people felt they had the right to learn without us present. They felt they had the right to a world without us in it, with us shunted off to the side somewhere where they didn’t have to bother getting used to our presence.

Mind you — I don’t believe in traditional school. I believe it’s just another form of institution, with the power structures that lead to bad things. I believe it’s unnatural to separate people out by age and expect them to learn socialization from people as immature and inexperienced with it as they are. Because it’s considered normal, few people in mainstream USA think of this, and many are outraged when I say such things. But I know how damaging school is to the minds and souls of the people who attend it, even if many people deny that this happens.

So I am not saying that I wish everyone was in regular school. (Nor am I saying the thing some “inclusion” advocates say, that it’s bad for disabled people to be together because we might catch disabled cooties and they want us to learn to be more like nondisabled people.) I wish nobody was in regular school. I wish learning happened instead, in ways that most people cannot even imagine. But nonetheless, I dislike the fact that nondisabled people in regular schools think they have the right for us not to be present with them. That’s just messed up.

But what I said about how things ought to be done in a way most people cannot even imagine? I don’t just think that about school. I think that about the entire way our society deals with disability. I want everyone to be able to see that vast landscape of human variation that I see when I look at all people, disabled and nondisabled. I want people not to see us as defective, as people who ought never to have existed in the first place. I want people to see our problems as just part of the human condition, just like everyone else’s problems, not something specially and uniquely horrible.

And I get that mentality from my family. They didn’t necessarily try to give me that mentality. But they succeeded anyway. They showed me who they are, who I am, who we are, down as deep as it goes.

I have a story that’s been writing itself in my head for a long time.

A disabled girl seeks out the nymph-like beings who make up the trees and the rocks and the landscape in her world. She expects them to look like the nymphs in pre-Raphaelite paintings. Instead, to her shock, they have the same level of diversity that humanity has. They come in all sizes, colors, and body types. Including many that are disabled. Including some who look just like her. When she sees the ones who look the most like her, she is shocked. And repelled. And she runs away in terror, and goes home and cries. She can’t get the image out of her head. She was looking for what she considered “better” than her, and instead she finds she’s almost looking into a mirror. But eventually she learns, that just like the trees and the rocks and the ground come in all different types, so do people. That trees, rocks, and ground don’t mind this. That people shouldn’t either. That there’s nothing horrible and unnatural and wrong and shouldn’t-exist about the way she’s been built. And then she cries for an entirely different reason.

That’s how I see disabled people. And that’s what my family taught me, willingly or not. I may have been getting messages from society ever since I can remember that there was something terribly wrong with me. (One of the first conversations I remember between my mother and a stranger involved a stranger asking her what was wrong with me.) But… I was also getting that deep down underneath message that all kinds of people exist in the world and had a place in it, disabled or not. That both the good and inconvenient parts of disability were just part of what goes on in life, not something jarringly different from “real” life.

My most basic views on disability don’t come from ideology. They don’t come from buzzwords like neurodiversity or social justice, or the movements and ideologies surrounding those terms. They aren’t specific to autism and don’t come from the autistic community. They come from deep down in my bones, the bones my family gave me.

Note: If you link to this post, the cut won’t be there, so be sure and let people know that if they don’t want to read spoilers for the latest My Little Pony series then they shouldn’t follow the link.

When I hear someone describing themselves as “good with” an entire category — “good with animals”, “good with autistic people”, “having a way with cats” — it immediately sends warning flags up. (Not absolute warning flags, but certainly warning flags.)

But I never expected a children’s cartoon to give such a good example of why. (I’ve had a stomach virus lately and for awhile children’s cartoons were the only thing I could follow.)

The following is a series of clips from an episode of the latest My Little Pony series. They deal with a character named Fluttershy. Fluttershy is a normally sweet, soft-spoken, sensitive person whose talent is basically “being good with animals”, whether butterflies or bears. (Each pony has an innate talent or affinity that they discover as they are growing up. Once they discover it, a symbol magically appears on their butt. Fluttershy’s symbol is a bunch of butterflies.) Given this characterization, I never expected them to show the dark side of believing oneself “good with animals” to the degree she’s normally portrayed as.

Don’t click on the cut unless you want spoilers for a fairly late episode in the series. I’ve done my best to transcribe it since there’s no captions. The clips show only Fluttershy’s parts of the episode. Some parts may not make sense without context, but the basic gist of it is pretty clear after awhile. And I have to say — some of that is barely, if at all, exaggerated from interactions I’ve had with people who believed themselves “good with autistic people,” “good with nonverbal people,” or whatever else in that vein they believed. I’ll write more about that after the transcript, because I don’t want what I say to give too much away about the episode.

Read the rest of this entry →

I just read Notes from the Urban/Rural Divide: Pardon Me, Your Contempt is Showing by meloukhia.

I was raised in San Jose, California, so it might seem odd that this post hit home for me. But it does.

I grew up hearing from other people that the region of California my father is from wasn’t actually part of California. Because California is only the Bay Area and the Los Angeles area, apparently. The school actually called my parents once to express concern when I repeated to the whole class everything my dad had told me about how to kill chickens for food. (I was also the only kid who had chickens.) My dad is from a farm in the central valley, where his relatives originally came from Oklahoma and Arkansas. People from there were immediately hated even by the existing local residents of California. While prejudice towards “Okies” and “Arkies” in specific had waned where I lived, prejudice towards the general idea was definitely everywhere. People mocked the accents and speech patterns I heard from my relatives on both sides of the family, as another way of saying stupid without actually saying it. It’s still painful to think of how I tried to eliminate the traces of those speech patterns that showed up in my own speech (and sometimes even tried to “correct” my parents, which feels even worse), because I was so mortified by things like that. I actually had teachers tell me it “sounded uneducated” as well. It only got worse when I went to a school that was mostly for rich kids, because then it was both class and urban/rural stuff to contend with. (Because you can be raised in the city and yet still be influenced by the rural-based culture of your family. Which has always made me feel a weird sort of in-between status, regardless of whether I was living somewhere urban or rural at the time.)

Both my parents lived in rural areas or small towns growing up. They live in a rural area now, in the real north of California, not the Bay Area that everyone calls Northern California as if the state stops anywhere near that far south. (People have actually asked me why they’d want to live in the mountains “cut off from everything”.) I live in the largest city in Vermont (one of the most rural states in the country), which was still called a “small town” by CNN. (I’d actually be living in a rural area if I didn’t need the frequent medical care.) And meloukhia is right that rural Vermont was one of the areas most devastated by the hurricane, even declared a disaster area. Entire towns have been underwater. Even in Burlington, which got off light, everyone knows people from the more rural areas who lost a house or a workplace or a town. The idea that the hurricane didn’t really do much damage is… I was going to say ludicrous, but more like grossly offensive.

There’s a naked, ugly, almost angry contempt people in urban areas reserve for rural communities, and it’s a twisted, unpleasant thing. In the wake of the hurricane, some ‘progressives’ suddenly claimed to care about rural issues, taking care to excoriate each other for belittling Irene while there was serious damage in Vermont, but almost immediately afterwards, they returned to their ways, again ignoring rural areas and rural issues in favour of topics they found more interesting. They totally ignored the impact of the earthquake on rural communities, even though that information was made readily available; instead, both Andrea and I got hate mail for the piece that ran here.

I live at a strange straddle of the urban/rural divide, something I’ve discussed before. Most people who read me casually or only see a few pieces of mine assume I am a resident of the Bay Area, since they see I’m from Northern California and the Bay Area is the only thing there, right? So people feel very comfortable letting their contempt fly around me, assuming that I am one of them and will join them. And when I point out that no, their assumptions are actually wrong and I am living in a rural area, there’s not even a hint of embarrassment, just a little ‘well of course you’re different.’

I’m very glad that ou wrote that. Because it says things that have existed in my head since forever but haven’t been possible to say.

Letter to Occupy Together Movement by Harsha Walia

It describes some things I’ve been uneasy about with the #occupy movement, and some I hadn’t thought of, but it’s well thought out and fundamentally about the necessity of involving the perspectives of everyone in the “99%”. (Including the people whose land is already being occupied without acknowledgement from most of the people involved. I don’t see how people can ignore what my inner senses always perceive as this murky ooze of genocide and slavery that practically permeates the American landscape to the point it seems impossible to not notice it. But people do.)

While I don’t know when I’ll have the brain to put it together, my friend (the one who wrote the post about this movement that I linked to before) has requested that I make a video dealing with concerns we have about making sure that disabled people are likewise fundamentally respected by people who probably haven’t thought of it before (and probably don’t respect us now as full human beings). I’ve got ideas on what to put in it, and my friend has helped, but it’s really hard to make a video when you’ve got this little energy. Fortunately she suspects this will be around for long enough that I’ll have plenty of time to put it together. (And who knows, sometimes I say something like that and put everything together in a frenzy of energy one day and collapse for a week or two after. That’s what life with fluctuating skills and energy levels is like, you never know the exact moment when everything will come together right in order to get something done.)

But basically… most people (and therefore most people involved in this movement) fundamentally don’t grasp that disabled people are people. They’ll deny it, and they may believe they think we’re people, but their actions treat us differently than their words do. Even people who are against capitalist greed in theory, have usually not worked out that part of capitalism is valuing people differently based on the kind and amount of work they do, and the creation of a system that figures that if it can’t manage to exploit disabled people then we’re basically trash. And they generally also haven’t thought through the terror of becoming disabled (especially but not limited to cognitive disability) that drives them to the ultimate danger for us — that they’d want to die if they were like us, and therefore we are better off dead. And those two distortions of reality (because reality is that we are valuable because we exist, end of story, there can be no “buts” added to that) combine to horrific effect to both devastate and outright kill disabled people.

But the video I’m trying to make, while it will obviously go into those subjects in enough depth to get the idea definitely across, is fundamentally about the value of all people (and specifically the value of disabled people because we are people). Because without understanding that, this movement will end up reproducing all the screwed-up dynamics that already result in the oppression of disabled people as well as many other sorts of oppressed people. So it’s really, really important that while we support this movement, we also make our voices heard as firmly as possible to get things across so that it is reflecting values that will substantially change things for people already currently oppressed in ways a little more complicated than most people think of when they think of this movement. I absolutely support the general idea of the movement (because if someone doesn’t do something to stop the people with power, there will be destruction much worse than if they don’t do something, even if the something ends up being destructive to people like me in many ways), but I also know that without disabled people’s voices getting heard the outcomes could still be quite bad for us even if their goals are totally met otherwise, and I want to do everything I can to make sure things don’t happen that way.

(And if anyone’s going to get on my case about making a video while I’m supposed to be resting — I’ll try really hard to be careful. I have much more energy than I did when I first mentioned needing to rest, although it’s still a pretty fragile level of energy that can go away fast if I’m not careful. Today I had a doctor’s appointment so I’m really wiped out and can’t even think of making a video without brain-pain, especially given that right now all words I read are affecting me like Words That Bite My Brain, and the words I write are coming out much more scrambled than usual so then I have to read them over and over, biting my brain as they go, until I am fairly sure I didn’t get them in the wrong order. I can’t even count the number of times I’ve read through this and found words like “by” and “from” and “with” and “about” and so forth mixed around, so if I haven’t caught them all, that’s why.)

(If you don’t know what I’m talking about, I’m referring to an earlier post called Story, Story, Story, WHAP!. I’m not suggesting that the title of the post become a long-standing name for the phenomenon.)

So for me at the moment it’s any of the many different ways of saying:

“I have this [insert relative here], sort of. But we only visit her [insert ridiculously small amount of time], because she’s got [insert diagnosis here] and she naturally [without us even questioning whether this is okay or necessary] lives in [insert type of institution here].” Bonus points if they don’t treat her even remotely like a part of the family except when they want to make the character in question look sympathetic or like they have a “tragic past”. Extra bonus points if the person has never even met or made the smallest of token efforts to meet their relative but still want to angst about this person’s existence on the planet as far as I can tell. (While never, not even once, thinking of how their relative herself might feel, about any of that, because we don’t have feelings or reactions to not being treated remotely like part of our families.)

I’m not talking about instances where the person is institutionalized for reasons beyond the character’s control, the character has tried to do something about it, and is actively prevented from seeing them for more reasons beyond their control. Like in Lest We Forget (a sort of documentary-on-CD put together by the brother of one of the former inmates of an institution being covered by the documentary), the only times the guy annoyed me more than slightly were for… other things.

It’s more when it’s “This person is barely a part of the family and that’s because that’s how these things work, period, end of story, and this is only ever brought up to manipulate the audience, and the injustice of the situation is never questioned whatsoever.” Or when it becomes all about that one person’s suffering with no comprehension at all that whatever they’re suffering, it’s nothing even close to what their disabled family member is suffering by being in that situation. Or other things along those lines.

That’s not the only thing that pisses me off on sight, but it’s the one that I’ve run into more than once recently, so it’s what I remember right now.

What sort of things (please read the original post so you know what I mean) affect any of you this way? I’ll probably throw more in, in comments, as I remember or run into them.

Edit to add: I’m less concerned with what specific books/movies/etc. people have seen these in, and more interested in what they’re actually doing that provokes this reaction. Although of course people can reply however they want, I just thought there might be some misunderstanding.

I’d been meaning to write a post on this myself, but I couldn’t figure out the words. Fortunately a friend has figured out those words already, so all I have to do is link to her post. She also gives some ideas for people who can’t go to these things. (Like me. If I can barely get out of bed, I can’t exactly go to a protest — which is pretty infuriating right now. But I can send these links about it so other people hear.)

Here’s her post:

Every thoughtful, moral individual right now belongs in the streets

Some other links on this issue that people have sent me:

Articles:

Behind the Scenes of #OccupyWallStreet
The Best Among Us
Occupy Wall Street Protest Migrates to Montreal
Europe Stunned After Being Told “Obama Is Not In Charge”

Livestream (not captioned, don’t have transcripts):

Global Revolution

Youtube (not captioned, don’t have transcripts):

Occupy Wall Street (FULL) Interview with Chris Hedges Part 1
msnbc video Rewriting Occupy Wall Street protests Lawrence O’Donnell The Last Word
Unbelievable protest footage. NYPD drag girl across the street
The People Occupy Wall Street While Wall Street Dreams of Another Recession
Countdown With Keith… Michael Moore on support of Occupy Wall Street protest

I’ve seen other videos but I can’t find them anymore.

Apparently the best places to follow all this are on Twitter (#occupywallst, #occupytogether, #globalrevolution, and others) and on that Livestream video. One video I saw (can’t find it now) said that — at the time the video was made — CNN was covering a small Tea Party meeting in a Denny’s but wasn’t covering any of this at all. And many media reports that do exist have false or misleading information.

I’d meant to say something about this, but it never happened, because the hospitalization and then other bits of life got in the way.

My birthday was in the middle of last month. I hadn’t slept at all the night before, and most of the night before that, so I’d been up quite a long time. But I was going to have a really important Skype conversation with someone, and then I had other things to do, so I didn’t sleep in the daytime.

My memory stops sometime that night. Just… stops. I don’t know what happened in that time, although I can hazard a guess.

My memory starts again with hearing this voice saying nonsense, and my voice making… noises, some of which may have been the kind I use to indicate yes and no vocally. Eventually I made out the fact that I was talking to a 911 operator. Internally I was going “OH SHIT NO NO NO HAVE TO GET OUT OF THIS NOW!” I started saying “uh-uh” a lot, as forcefully as I could. It had no effect, she still wanted to know what was wrong, and didn’t seem to get that I was trying to say that nothing at all was wrong. I ended up hanging up on her.

Mind you, my brain was still incredibly fuzzy at this point. And then everything faded out again, and next thing I knew I was talking to a 911 operator again. Again I had this visceral “GAH GET AWAY FROM ME NONW” response. This time I was very forceful with the “UH-UH!” and they still didn’t get it and I hung up again rather pissed off that I kept waking up on the phone with these people.

So eventually the cops showed up at my door. Just the cops. Which is weird, because normally when someone needs to call 911 for me (and… the fact that there’s a “normally” there says way too much about my life) there’s paramedics and fire trucks and stuff. But all I saw this time was cops. Maybe because they know I’ve gotten death threats and were walking into an unknown situation. I don’t know.

So they show up at my door. And I’m still really fuzz-brained, in a lot of “brain pain” (sort of “someone has chopped up my brain into little pieces, scrambled them, and then stuck them in all wrong”), and not really with it. And they want to know what the problem is. And somehow, I still don’t know how, the explanation that comes out of my fingers is “I was trying to call someone else and my fingers just kept dialing 911 instead of the right number.” I don’t know where that explanation came from. It’s probably a good example of how I handle language under pressure (which basically goes “say anything, anything at all, that might be a plausible answer, regardless of whether it makes sense or not”). But anyway, they asked for my ID and left.

Then I ran over to my neighbor’s house crying so hard I couldn’t communicate, until she finally got the whole story out of me (at a point when I still was too confused to put together that I’d been having seizures). She tried to call the police department on my behalf the next day to explain, but they told her they were too busy to deal with explanations.

And now I’m in a position of having to figure out how to put together something explaining complex-partial temporal lobe seizures to the police department. Because I don’t want to leave it at “this person called 911 for no reason whatsoever”. Not sleeping is one of my major seizure triggers. And this is not the first time I’ve dialed a random phone number during a seizure. I just chose the worst possible one to dial, given that for me seizures are rarely an emergency, and dialing 911 has consequences.

From the Wikipedia page on automatism (relevant part bolded):

There are varying degrees of automatism. Some may include simple gestures, such as finger rubbing, lip smacking, chewing, or swallowing, or more complex actions, such as sleepwalking behaviors. Others may include speech, which may or may not be coherent or sensible. The subject may or may not remain conscious otherwise throughout the episode. Those who remain conscious may be fully aware of their other actions at the time, but unaware of their automatism.

In some more complex automatisms, the subject enters into the behaviors of sleepwalking while fully awake up until the moment it starts. In these episodes, which can last for longer periods of time, the subject proceeds to engage in activities s/he routinely performs, such as cooking, showering, or driving along a familiar route, or may even carry on conversation. Following the episode, the subject regains consciousness, often feeling disoriented, and has no memory of the incident.

Most people who’ve heard of automatism have heard of things like lip smacking. They haven’t generally heard of doing complex tasks that are familiar to the person. For some reason, my seizures periodically make me dial phone numbers, among other things. I have no idea why, but it’s happened before. (Including one memorable incident when I woke up on the phone and had apparently been either seizing or incoherent and confused for ten minutes before I finally woke up and retained memory of what was going on. That time, the other person had almost dialed 911 on my behalf.)

For some reason, I have this deep fear of ever hearing the tape of the 911 calls I made. There’s something that feels intensely private about what I do while still technically unconscious, and hearing the tape would only remind me that other people probably heard me making weird noises or something. I was embarrassed as hell when the cops came and I had to come up with some explanation while still post-ictal.

I’m writing this because most people (including many emergency responders) seem to have no idea what seizures can look like. According to people who know me, the cops should have taken my confusion as a sign something was wrong. But of course they didn’t do anything in response to that. And now I have to figure out how to explain TLE and automatism and complex-partial seizures, on paper, in a way they’ll understand, and for some reason I still haven’t been able to write anything on the topic.

I have a cat blog now: Cats Who Know They Are Cats

It contains both its own posts, and posts from my other blogs that have to do with cats.

Warning: In the future it may contain huge amounts of cat pictures, which is one reason why it’s its own blog, so it doesn’t clog up the others with pictures people don’t want to see.

I’m real.

I’m a real person.

Just as much as anyone is.

That means what happened to me was wrong.

Oh god.

That means they hurt me. They hurt me badly.

I couldn’t see it.

Everyone else was outraged.

I wondered what the problem was.

Because I wasn’t a person so what happened to me didn’t matter.

Until a couple days ago.

Then suddenly everything mattered.

And rage. And pain. And everything hitting me at once.

When they talked to me. They didn’t talk to communicate. They talked to control. We were “retards”. Even if they didn’t use the slur, the meaning of it was there.

I cried more that week than I cried the year beforehand. Not the usual kind of crying either. The kind that is more like screaming.

When they made it clear I couldn’t call my power of attorney for healthcare when I had a serious lung infection. When they called someone else instead — they called, not I called. When they wouldn’t let me call anyone.

When they told me that people there are free to call home at any time. (As long as they approved.) Just after making clear I couldn’t call who I wanted when I wanted to — needed to — call them.

The constant contradictions. Tell her whatever will calm her down and keep her quiet. She’s just a “retard”, she’ll never figure it out.

And I never did figure any of it out right away. They liked that. My comprehension issues prevented me seeing the way they lied, talked nonsense even, stuff just as incomprehensible as saying “Because I’m a duck” when asked why they’re taking a bath. So they’d tell me they were ducks and it would shut me up in the short term and they liked that so they did it a lot.

They did it to everyone else too.

At one point, I actually noticed that what they were saying made no sense. And told them so. So they just came up with something else to say that made no sense. And then something else. All of them unrelated to each other. Until they found one that shut me up and got me to do what they wanted.

When I got mad because someone in authority judged me incapable of something at a glance, the problem turned into me. Because apparently yelling “EYY!” in an annoyed tone of voice is really terrible compared to judging someone’s abilities without even knowing them, trying to restrict their access to an activity that everyone else gets to do. Suddenly the only problem was my anger. And I would not be allowed to participate in the activity I was judged incapable of until I stopped being mad.

Then they told me I was judging this lady unfairly. Let’s see. She judges my abilities by glancing at me and attempts to prevent me from an activity I excel at, on the basis of that glance. I get pissed off as a result. And they say I’m the one judging people unfairly. (Even though I hadn’t said anything about her, other than that she was wrong about me. They did things like this, a lot, and succeeded in keeping me completely off balance and doubting my ability to know anything.)

They told me all this in a tone adults use with children and only children.

I called them on that. Multiple times. They denied it and told me I just didn’t understand that adults take that tone with each other all the time.

Then why did they call us girls and boys, and each other women and men? These are the questions that don’t enter my head at the moment of hearing their “shut her up by any means necessary” explanations.

Don’t get the impression that I went there ready to stand up for myself, and did so whenever anything went wrong.

I rarely did. And only with profuse apologies. I only got openly angry once or twice. It wasn’t safe to. If I did ask for something, I begged, I pleaded, I apologized for existing at all. I made myself so small I couldn’t even see me. I wasn’t just passive, I was actively passive, that’s a whole new level of passivity.

And god. When I realized I was alone. And I was very sick. And I had no way to call anyone on the outside. And nobody was familiar. And I was totally at their mercy. That’s when I completely broke down and cried for hours.

They told me I had no reason to fear for my safety. They told me that one of them had a degree in special ed and another delivered babies so they were good people I could trust, and could never engage in abuse. They told me that something was wrong with me and fundamentally wrong with my ability to deal with people in general if I didn’t take people with enormous amounts of power over disabled people, at their word that they’d never do anything to harm us, even as they were trampling all over my basic human rights. Because they’d never abuse people.

Which is why, whenever an elderly woman fell, they yelled at her. “Quit faking. You have your own two feet. Walk on them.” She wasn’t even allowed to sit down when other people were standing. They never said a word to her that wasn’t either telling her what to do, or berating her for sitting down on the ground, or falling down. And when she fell, sometimes she managed to make it a controlled fall (which only increased their anger at her). But sometimes she fell hard, really hard, in ways that had to be doing injury. She walked a tiny, shuffling, wobbling gait that had severe pain written on every step.

I believe that woman will die. And when she dies, they will find that it is from a condition she had for years upon years. And it will have gone untreated. And they may have been able to save her. But they won’t. Because her parents say she’s faking everything (at their age, that may simply be an excuse not to provide care that they’re too old themselves to be able to give), so they must be right and verbally abusing an old woman for falling is somehow ever okay because of this.

WE ARE HUMAN BEINGS. YOU CAN’T JUST DO THIS TO US.

And yes, I tried to put in a word for her. And they told me that if I was really concerned, they could arrange to have the director explain to me why this was actually appropriate behavior on their part. Because she’d known her for years so she had a good grasp on the situation.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

And the problem then was that I didn’t feel safe — feared for my life. That was wrong of me. Because it hurt the feelings of the poor little director who had all the standard credentials of a professional do-gooder and of course ran the place so she could do no wrong and certainly never be complicit in abuse.

I was coughing up green phlegm. Very green phlegm. I asked to call my power of attorney for healthcare. They said I couldn’t. I told them at home I could. They said this wasn’t home and they did things differently here. If I made a call at all it would be after they had an hour-long meeting on whether it was appropriate.

On a day when every hour counted as far as getting antibiotics from a system that takes a lot of time to even get hold of a doctor. With lungs that have such serious trouble clearing infections that I had to go on more than one course of antibiotics in the end. With a lung condition that (if left untreated) can go into a vicious cycle of infection -> damage -> more infection -> more damage, ultimately ending in death if the infections don’t kill you first.

They wouldn’t let me call outside and I was in danger and I was terrified out of my mind. And when they do make a phone call. It’s to someone they had no legal right to talk to. And their biggest concern is whether I was lying when I said how often antibiotics make me poop.

(Because I used the phrase “all the time” and then clarified that like most usages of that phrase I simply meant “a lot more than usual”. This was their big concern, that they somehow couldn’t trust me to tell them how often I shit when I am on antibiotics. But my case manager, who isn’t around enough to know that, is the only one they’d trust.)

Then the issue became that I took the phone from them to try to communicate directly to the case manager. Out of desperation.

And then the issue became whether I “took” the phone or “grabbed” it, because this is a massive problem in an urgent medical situation.

And then the issue became that I closed my laptop cover a little to get a bit of privacy while trying to compose my thoughts in a hurry. This apparently meant that I no longer wished to be part of the conversation.

And then the issue became that when I typed words in a massive hurry because they were threatening to stop the entire phone conversation over the above, the words I typed were not complimentary to this poor woman who delivers babies and therefore could do no wrong.

(That’s what they told me. That she delivers babies. Therefore she couldn’t have done anything wrong. I’m not making this up. It’s a good example of the “because I’m a duck” form of answering questions around there.)

This also illustrates their weird power plays — when in doubt, turn things around so the disabled person is at fault for something, however little, and focus all conversation on that thing. I was far too sick to be able to keep the words straight enough to insist on staying on topic.

They wouldn’t let me rest.

No more than one hour a day lying down. If I even needed one more hour than that I was out of luck. And didn’t belong there. Because the point of being there was to do every activity on their schedule. And if I got too tired and had to skip one, well then I must not really want to be there.

And if I did lie down they told me I was taking staff from other people who needed them.

At one point I was approached by three people at once who all wanted to talk to me about what a problem I was being. Why? I had to pee too often, at inconvenient times of day.

I started holding my pee. I got a UTI.

The lack of rest contributed to the sinus infection and the lung infection. It trashed my immune system. But that’s okay because I got to all the activities on time!

Later, I told them how easy it is to manipulate me by telling me that my actions are harming someone else. I will usually then avoid doing it. Even if it kills me.

Towards the end I told them my life was in danger. That I had to rest until someone took me home. That this could be a life and death issue if I didn’t rest. That I have instincts that tell me when something reaches that point and that not heeding them leads to trouble. Always.

They said they understood and that this was fine.

Five minutes later they told me that if I rested, it would prevent two other people from saying goodbye to our staff person.

I objected.

They kept on me, using all the weaknesses I’d revealed to them against me, until I relented and allowed them to take me out to the activities.

They didn’t care if I lived or died as long as I made it to the activities.

I was very sick. For weeks.

I stopped going there after a week and people hearing my stories were outraged on my behalf.

I wasn’t.

Because to me, I wasn’t a person.

To me, nearly everything I just described was okay.

To others, it sounded more like abuse and neglect.

I was shocked to hear them use those words.

I couldn’t understand.

I wanted to go back once I got better. To show them I could be good when I wasn’t so sick that I screwed up and showed inconvenient emotions.

I didn’t relent in that until someone basically asked me if I had a death wish.

* * *

By the time I was old enough to be aware of myself as a person, other people had already made clear that I wasn’t, actually, a person at all. So I never learned that I was.

I still don’t understand how it is that most people develop self-respect so early and without being taught. I don’t understand how people just know certain things, like that it’s possible to physically run away when threatened, and know them consistently, from an early age. Most of the time such a thing would never have occurred to me.

I was around my early twenties by the time anyone started systematically teaching me I was a person. It worked, a little.

I started doing things based on this knowledge.

Then I suddenly at one point started getting huge amounts of attention for what I was doing. It came out of nowhere as far as I was concerned.

I hated it. Positive, negative, didn’t matter, I couldn’t stand it. I wanted people to pay attention to what I said, sure, but not to me.

(And frankly, most of the attention I got? Was not about what I said at all. Not even the “positive” attention. Much more of it was about the fact that the sort of person others assumed me to be could say anything of any kind at all. They’d promise they’d showcase my ideas, then they’d make it all about this image they had of me and then substitute their own ideas for mine, so that next to nothing of my message got out. If my messages had truly sunk in I’d have gotten much less praise than I did.)

So without even knowing I was doing it, I ran away. I buried any sense of my own personhood as deeply as I could manage. I guess I must have thought that would keep me safe. Not that that makes any sense at all.

This did stop my terror at getting all that attention. But it stopped a lot of other things too. When bad things happened to me, I barely noticed. And when bad things happened to others… I don’t know how to describe it. It’s like I’d glance out the corner of my eye and turn away unless something stopped me.

Because this is real life, and not the world of language, none of this was absolute. I did react to things sometimes. And while a portion of me was quite deadened, the rest of me was capable of being happy in other ways and in other areas.

But before I knew it, I was voluntarily walking into a rec program that had warning flags out the wazoo. That a person who works at a good program in the area (yes they exist) tells me that she knows someone who goes to this place an adult and comes out acting like a six year old, totally not herself.

I walked right into this place whose power structure is straight institutional even if it doesn’t look like what most people would call one. And they hurt me. Badly. On levels I didn’t think I could still be hurt. And I barely felt it, while I let them take even more from me than I’d already given away.

I had to take others’ word for it that what they did to me was terrible.

Because you can’t bury your personhood and not have it screw with you on every possible level.

This was probably behind the events leading to my hospitalization, too. When you know you’re a person, you care more about your health than just that it really freaks out your friends and family when you’re seriously ill. One friend tells me that when I made clear it was more for her sake that I was taking better care of myself now, she realized just how little basic self-respect I had.

But taking care of myself seems to be how I’ve made a major shift in all that.

Because I’ve been getting into the habit of checking on my body’s levels of pain, exhaustion, and other things, several times a day.

And somehow, connecting to my body that often has caused some links to form that I’m not sure have ever formed to this degree before.

The final thing that did it was reading the blog Just Stimming. I kept noticing that Julia had something I used to have. Something that was gone from all of my recent writing, for a long time now. I couldn’t put my finger on it. Then I realized it was that sense, that one that goes, however faintly, “I am a real person and I don’t have to take this.”

And then the entire world shifted in an instant.

It got more three-dimensional, emotionally. And I got more three-dimensional too. And there was something where there had been nothing. It was like suddenly realizing that I had a tail, and the only reason I’d not thought I had one was because it had fallen asleep. Only it was a little more central than a tail.

And then everything that happened at the rec program hit me over the head at once and I started crying so much I thought I’d never stop. And for the first time in a long time I was furious. My friend told me to just be sure the anger came from love and not hate. It did.

For some reason the part that hurt the worst was not that they could have killed me. It was that thing they did where they told us random nonsensical things to shut us up, knowing we wouldn’t notice it in real time. That just seemed to hold within it more bigotry than everything else combined.

Mind you, they weren’t all bad. The staff were better than the administrators. But even the better ones had instructions to follow which are impossible to both follow and respect basic rights, which is exactly how institution-type power structures function.

I’d wanted so badly to be one of the good ones. I remembered thinking how bad some of my friends were, because they’d never have tolerated the bullshit. I turned my soul into pretzels trying to fit into this place and nothing I did was good enough. When I told them (while crying my eyes out) that their pointlessly rigid rules and schedules were impossible for me no matter how I tried, they told me I should have brought one to one staff. As if I could afford to pay one to one staff, among all the other reasons that approach to things is wrong.

I actually told them how they could make the place more accessible to me and others who needed to rest more often, without even breaking their rules. They didn’t like the idea. It would have interfered with their attempts to force people to attend activities we didn’t want to or couldn’t attend.

I witnessed a staff person telling a woman with documented gut issues that “walking helps stomachaches” (fabricated on the spot) just to get her not to lie down and rest when she was doubled over in pain. At one point all three of the people assigned to our staff person wanted to rest. Technically if the real problem was “taking her away from the other two”, this should have been fine with them. But she forced the third person to attend the activity anyway. Because that was never the real issue, it was just one more lie they used to manipulate us.

At one point while we were resting, this one woman started making horrible retching sounds, that we’d never heard her make before, and there were no staff around. So three of us decided that she might throw up and the most mobile of us would go get staff. That person did. The staff person came in, barely glanced at the bed the retching woman was lying on (with the covers over her head so she wasn’t even visible), and said “Nothing’s wrong, she’s asleep.” We tried to explain that really, she sounded like she was throwing up, and we were worried about her, and not making this up. The staff person basically told us to quit worrying and mind our own business in the future, and left.

They really liked this one woman. She was even more passive than I was. She was capable of holding a regular conversation. But when staff were around, she’d hear the staff person saying something, then she’d repeat it. Like “Lunch now, right?” She’d repeat “Right?” with higher and higher levels of anxiety until staff confirmed it. And then she’d ask “Am I a good girl?” with the same level of anxiety until someone told her she was. And she always was, because she barely breathed without confirming it was okay first. They adored her for it. They saw it as sweet. I saw it as a person who was utterly terrified. They couldn’t see that at all.

I also noticed that like her, most people there were much older than I was. In contrast to just about all other rec programs I’ve been to where the age range is a pretty normal one. I’ve wondered if it’s because most of them are from an era where this sort of treatment was what you could expect, or better. And most of the younger ones were people whose impairments were mild enough that they could handle the place’s rather draconian rules without their bodies forcing disobedience the way mine did.

I’ve been told by doctors that the lack of proper rest — simply tilting my wheelchair back and pushing it into a non-restful location doesn’t count given that when you have as little energy as I do, even sensory processing can wear out bodies that are not even autistic — is likely how I ended up with three kinds of bacterial infections at once. Infections bad enough that by the time I got home, I was heavily disoriented for a few days. (At one point I started essentially dreaming while I was awake, I could feel that I was in bed but all I could see was this weird alien skyscape.) And fell so hard that I bruised a rib, and injured my hip in a way it hasn’t recovered from months later. And lots of other fun stuff.

But although I take being that ill quite seriously, it’s still the degradation of being manipulated the way many of them manipulated us, that really hurts and pisses me off the worst. And just… the way they found every hole in our mental defenses and swarmed right in, using those holes to further manipulate. And worse, I don’t think some of them even think any of this is wrong. One of them gets a lot of her ego out of being thought to be “good with the developmentally disabled”, and I am dead certain that’s how she thinks of her manipulation skills. As being “good with us”. But in her every movement and gesture is the concept of “retard” — unspoken, not even to herself. She’s uncomfortable with us but she hides it and thinks we can’t see… but we can, and I’m far from the only one who sees it behind the tense smile and the gratuitous hugging(!) and all the other BS.

I’m supposed to be too scared to say any of this.

But I’m not.

Not anymore.

I’m a real person.

And I know it now in a way I never have before, not even before I started running away.

And I didn’t deserve any of that. Nobody does. Not even those, like me, who were willing to settle because we think better isn’t possible or something else is so much worse or what do we matter anyway or whatever other ways we excuse things to ourselves.

And there is a lot, now, not just this, that I’m not going to put up with anymore. No matter what happens. Nothing is worth killing off bits of oneself one by one.

That’s much more obvious now that I see the contrast. Everything has depth now that it lacked just a few days ago — you can’t run away from pain in that manner without killing off a fair degree of joy as well. And it’s clear that even my reactions to what happened to others were affected, not just myself. I’m just glad something finally happened to jolt me out of it.

For some reason this mental image keeps popping up. Of someone beating me with a stick over and over. For years. And then suddenly my arm reaches up, grabs the stick, and shoves it away.

That’s what’s finally happened.

I will meet idiots today, went one version of her after-waking meditation, and one of them will probably be me. Iau Hau’hai, Queen of Life and of Making Things Work, grant me of Your courtesy the courage to shred that idiot’s ears when I meet her, and then get on with work… for being right is nothing next to having things be right…

From The Big Meow by Diane Duane.

I strongly recommend reading The Book of Night With Moon and To Visit The Queen (American title)/On Her Majesty’s Wizardly Service (UK title), before reading The Big Meow. In even the first chapter of each book in this series there are (necessarily) spoilers about aspects, sometimes major aspects, of how the previous books turn out.

Here are links to the Kindle Store for both of those other books (you can read Kindle books on most computers and a variety of other devices, you don’t need a Kindle):

The Book of Night with Moon
To Visit The Queen

Those books are also often available used for very little money.

Here is a link to the currently free online edition of The Big Meow (3rd book in the series):

The Big Meow

They’re a series about a bunch of cat wizards, and they’re the only books I’ve ever read that have even half-plausible cat characters. Not that they got it perfect (or anything else perfect), but it’s a hell of a lot better than Tailchaser’s Song and the like. They’re also a very rare type of book that get at aspects of reality most books don’t, if you know what you’re looking for. (Much like Momo or A Wrinkle in Time.) So they’re good even without the cats. Some people have told me there were problems in the plot of some kind… but honestly, I’m not some kind of professional academic literary type who knows what plot “should” and “shouldn’t” be like, I just like certain books, and I loved these books.