Empty Mirrors and Redwoods
This is in response to a quote I just posted:
“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich
This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.
Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.
It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.
There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.
I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.
They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.
Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.
So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”
But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.
On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.
Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.
After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.
I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.
Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.
Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.
One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.
I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.
Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”
I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.
To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.
But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.
I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.
So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.
The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.
This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.
I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.
And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.
Social Lessons I Learned At School
“For elementary school children on the higher functioning end of the autism spectrum, I usually favor mainstreaming because it is essential for them to learn social skills from typically developing children.”
—Temple Grandin, The Way I See It
[If this is too long for you, scroll down to the final sentence. It’s bolded. Also I just realized people might think I don’t like nondisabled people, or think disabled people can’t bully. Not true. I’m talking about general social trends and hierarchies, not each and every specific person.]
Not singling out Temple. I hear this all the time. But it’s wrong on so many levels. Before I start be aware I’m not advocating special schools. I would rarely advocate any schools.
What exactly are the “social skills” that children learn when forced into artificially age-segregated situations where children are learning social skills almost entirely from people as inexperienced as themselves, in an environment of powerlessness? From everything I’ve seen this leads to incredibly brutal situations.
This is one reason that contrary to popular belief, unschooled kids have better social skills than kids who go to school. They interact with a wider range of people in natural everyday situations and they totally benefit from it. I can’t even fathom the full extent of the damage that forced currently-typical schooling does to a society.
(My dad to this day talks of the trauma of going from a tiny one-room schoolhouse with a wide age range where everyone helped everyone else learn, to regular, more institutional type of school. “Hall monitors? HALL MONITORS?”)
Meanwhile… far from it being that autistic people are the main ones who need to learn social skills. There was an experiment where nondisabled children were taught how to respectfully interact with autistic children. This resulted in sudden “social gains” among the autistic children, that approaching it the usual way (where autistic ones are socially defective and are the ones who need to learn the social skills) wouldn’t work.
Besides all that, what’s all this crap about it being better for disabled kids to learn social skills from nondisabled kids? And what exact social skills are talking about?
From nondisabled kids I learned lots of social lessons.
I learned if you’re different you’re fair game.
I learned you can fit in a little bit by joining in the bullying. I only did this a handful of times and it tore my heart apart.
I learned to hate myself so thoroughly that the first time I saw another autistic kid I felt a loathing and horror unlike any other. I recognized myself in her, different though we were, and being around her consequently made me feel like my emotions were being rubbed with sandpaper.
Put it this way: I understand why a woman with Williams syndrome, mentioned in one of Dave Hingsburger’s books, tried to bludgeon and tear her own face off every time she either saw another person with WS, or saw her own face in any reflective surface. Her face was permanently and obviously bruised, swollen, and damaged all over. When she died, she died terrified and screaming. She said it was because she was going to meet God, and God was the one who made her this way.
She was a product of aggressive mainstreaming. Never ever was taken to any event with other disabled people or people with Williams syndrome. Never had a chance to, at the end of the day, talk with people like herself about the horrific things they were enduring from their classmates. (Dave Hingsburger points out that DD children who attend mainstream school are integrating a school system that doesn’t want them there with virtually no emotional support.) Never saw anyone who looked like herself in a positive context ever. So she learned the social lessons of nondisabled kids well: That she shouldn’t exist and that she should try to destroy herself.
I learned that lesson too. I repeatedly tried to kill myself throughout adolescence. Many of my reasons had to do with never, ever seeing anyone else in my particular position. For a couple short years I thought I’d finally got the knack of making myself invisible. (I hadn’t but that’s beside the point.)
Then the floor fell out from under me. I began losing every skill that made me at least marginally closer to being a person that mattered. I had to stim in public. I had to lose speech and movement and receptive language. I had to experience the world as chaotic swirls and tatters of sensory information virtually all the time.
And having never in my life seen people who looked like that. Except sometimes being led in lines down the sidewalks by institution staff going on “outings into the community”. (Later it was me in those lines.) And realizing where people like me go in this society when we exist at all. I took all the self-erasing to the highest possible level and attempted suicide.
I talk to disabled people all the time who had the same experience. (And don’t anyone kid yourself that among autistic people all our suicide attempts are among the “high functioning”. Not all those “wandered into traffic” deaths are accidental, and most people considered LFA have plenty of awareness of the hatred people have for disabled people.) That’s one reason we freak out about euthanasia: It’s promoted as a rational choice for disabled people (not just terminally ill, not even close). Erase ourselves from humanity — they’d want to in our place. And with all the pressure to do just that. Such tremendous pressure every day of our lives. And with the way we are frequently expected to live and the living conditions we are supposed to just accept as our natural fate.
It becomes so, so easy to just tell a doctor we want to die and make it sound like a perfectly rational response to our “suffering”. Which is all innate to our disabilities, never forced upon us from the outside. All we have to do is talk about the “indignity” of our lives (frequently a code word for incontinence, one of the leading reasons people ask for euthanasia believe it or not) and the “suffering” that we have to endure in having to be forever cared for by others. They won’t question it, even if we are grieving the loss of a relative and have just been left by a spouse and all the other things that can drive nondisabled people to suicidal thoughts just as easily as us. Hell, some doctors even suggest suicide to us and a few outright try to manipulate us into it.
When I attempted suicide, I was prevented from doing so and put in mental institutions. I don’t approve of the kind of things that happened there. But I know that if people knew I had a progressive condition that would one day require me the supports I need now, they’d quite possibly have treated me differently. Today they could also quite possibly treat me differently, especially if it were legal to help me die. But some people would try anyway, legal or not. Kevorkian, a death-obsessed serial killer who switched from wanting to study state-executed prisoners to promoting euthanasia because the latter was more socially acceptable… some of his patients were both non-terminal and would be considered less severely disabled, and in less physical pain, than I am. (Hell, I have a pain condition nicknamed “the suicide disease” by doctors.) So this isn’t hypothetical. There are doubtless doctors who would much more quietly help me die if I sought them out, legal or not.
That’s why so many disabled people justifiably fear euthanasia. We know that even with “safeguards”, it becomes an acceptable and rational thing for a disabled person to want to die, but nondisabled people get suicide prevention. We know that in places where it’s legal and widespread, disabled people often have to go through huge contortions so that they’ll actually get medical treatment in certain emergency situations. Because it’s just assumed we wouldn’t want it.
Even in America, it’s hard to write a living will that allows you to remain alive at all costs in all circumstances. And your wishes can be overturned by a hospital “ethics” committee. Living wills were created to help people die, not to help people live, and that bias shows. And should you change your mind about wanting to die, after you become sufficiently disabled? (Which lots of people do. The fear of disability in the abstract often makes people think they’d be a whole other person they’d never want to live as. When they realize they’re still themselves, they usually discover their will to live is intact.) They may kill you (“allow you to die”) anyway. Like what happened to one woman after brain damage. She actually ended up being tied to her bed because otherwise she would get up and try to find food and water. They deemed food and water “medical treatment”, and refused to give her any because her living will said if she became cognitively impaired she wanted to die. This is far more common than most people realize, and is done both officially and unofficially depending on if they think it will get them in trouble.
All that to say: Disabled people who fear euthanasia aren’t dupes of the Religious Right. Our fears are horrifyingly justified. Today, with it illegal most places, it happens all the time in the medical system both overtly and covertly, both with and without the person’s apparent consent. And it happens in ways that are disguised as lots of other things. Remember the girl who can’t receive a transplant, even with a donor available, explicitly because she is DD? Don’t kid yourself that it’s not the same thing.
But then what is consent when we live in a world that bombards us day in and day out with the message that we are worthless wastes of space, who cost money and take up resources that rightfully belong to real people? Where other people’s suicide attempts are treated as medical emergencies that must be averted at all costs, while ours are “perfectly rational” and may even be aided by others, even if our reasons are the same as those deemed mentally ill? This is why so many disabled people baffle the rest of the world by freaking out over this rather than responding how others expect us to — “Oh thank you so much for protecting our individual liberties by helping us make death accessible, even if you’re not making life accessible first!”
I’ve come a long way, seemingly, from the topic of the social skills autistic kids learn from nondisabled kids. But I haven’t really. Because one of the biggest social lessons is to die. Both emotionally and physically.
That conference I talked about in my last post, where I saw Dave Hingsburger… it was the only large disability-related event where I had even a sliver of feeling belonging. It was a completely accepting atmosphere. When I told people of having people tell me I should never have kids because they might turn out like me. I expected to be patronized like usual and told this is normal and good and right. Instead, more than one disabled person came up to me afterwards and said “That’s not okay. That’s never okay.” I think it also helped that it was general DD and not autism specific. The DD community has a lot more maturity as a community, as well as fairly uniform kinds and levels of oppression that focus us on ending that, rather than falling into the worst habits of the autistic community. It has its problems, but not the same kind or scope. And this particular community was amazing.
After I got home, I cried so much. And one of the dead parts of me started waking up. This was a part of me that died long before disability-institutions got hold of me. It died when I became aware enough to get a full taste of the hatred that society has for people like me. I was maybe seven or eight. And it wasn’t an easy death, it marked the beginning of severe emotional problems of all kinds.
Before it woke up again, I often believed that my emotions lacked depth and complexity, even though they didn’t really. I still identified with Temple Grandin’s view of her emotions, even though deep down I knew better. And after that conference, the ice began to thaw, and I discovered many things:
I have a tremendous range of depth and complexity in my emotions, and I am a highly emotional person.
Having that depth myself, I could now recognize such emotions working in others. And I had been all along, the dead parts just prevented me from feeling it as intensely.
And that yes — some of the emotion-reading problems that had been attributed to autism, were actually the results of severe emotional damage. And the emotional damage was related to abuse for being autistic.
And that most likely I was not the only autistic person who is believed to have stunted emotions (and difficulty recognizing complex emotions in others) due to autism, when it’s really the result of being up against intense hate as a disabled person.
That, in fact, an an intensely disablist society where autism is often among the lowest in the usual disability hierarchies as seen by nondisabled people. There is literally no way of knowing how much of our social and emotional problems have anything to do with our brains work at all. I know plenty of autistic people with similar experiences so I know it’s true of some of us. But virtually nobody seems to want to go there.
But to sum it up: From typically developing children at school, I learned to die. From other DD adults, I learned to live.
“Lack of motivation” is a generally misunderstood symptom of depression. It does not mean that I sit around thinking, “Oh, I’m so depressed; why bother to do shit I don’t want to do anyway.” It means not that I lack discipline, but that there is a mental disconnect between my conscious mind, which says I want or need to do X, and the part of my brain which actually initiates activity. It prevents me from doing things I would very much like to do, as well as things I need to do, rather than indicating simply a lack of interest in doing things which are not immediately rewarding.
If you want or need to go somewhere, whether somewhere you’re eagerly looking forward to going, or somewhere routine, or to the dentist for a root canal which you may be much averse to but have nevertheless decided will leave you better off in the long run, and you get in your car, turn the key in the ignition repeatedly, yet the engine sputters but does not engage, this is not an indication that you don’t really want to go anywhere. It’s an indication that something is wrong with the equipment you need to transport you there.
I am fully capable of sitting for hours, thinking periodically, “I need to pee,” then, “I really need to pee,” and eventually, “Damn, I need to pee,” before being able to jump start the part of my brain which engages with the task of getting up and walking the ten feet to the bathroom, and initiates the movement which allows me to do that.
The more complex the task, the harder it can be, because a more complex sequence of actions must be, in some sense, imagined and targeted before the actions necessary to bring them about can be initiated. Most people are unaware that this process even takes place, because in a healthy brain, it occurs swiftly and automatically. In my brain, it does not.
Maud, There’s Good News and Bad News. And Fat News. (Shakesville) (via raphael-wolfgang, kiriamaya)
Yup. And then you add motor planning (praxis) problems on top of that and you’ve got even BIGGER problems!!! (such as those related to Sensory Integration Dysfunction) Yeah, that pretty much describes my life right now and why my thesis proposal will not be handed in on time. :( There are a couple of really good articles on the inertia/catatonia connection on my autism links page I recently put up if anyone’s interested. there are others as well, but am tired and experiencing amotivational state and motor issues and basically am virtually completely nonfunctional, so yeah… they’re not there. and there’s only so many things you can put on one page.
But anyways, What is REALLY fun (NOT!!) is getting stuck halfway through a task; literally freezing mid-way through!! That will get you REALLY funny looks from people who don’t understand/have never seen it before! They dont’ realize you’re stuck; they think you voluntarily stop and think you can voluntarily start up againand will get all pushy about you starting again when you don’t know how to!! Yeah, staring at a car door, or a shoe or a piece a paper or your hand and not knowing what to do knext or recognizing the object is all sorts of fun!! NOT!!
(via autisticwolfchild) Story of my life. (via goldenheartedrose) (via tuuli) (via nicocoer) (via theskinofourteeth)
I remember noticing how odd it was… I have a movement disorder variously described as parkinsonlike or “autistic catatonia”, that seriously impairs the link between thought and action (and thought and thought, and thought and memory, and just about everything else, it makes things that in most people are close together, become very far apart, sort of widening the gaps between things). And then when I was depressed, on top of that? There was a really obvious difference in the way the gaps were widened.
With depression, it felt like this fog — a dirty fog — was covering everything, and sort of infiltrating movement and stretching out that distance long and thin but in a really messy way. And there was a qualitative difference I’ll probably never be able to describe, but definitely a different kind of mechanism than in a regular kind of movement disorder like I have. It was more like Bilbo in the Lord of the Rings, who described himself as feeling thin and stretched like butter scraped over too much bread.
Anyway, over time I actually came to appreciate the weird sluggishness that depression caused me. I think it may even be a built in protective mechanism of the body’s. I am pretty sure it prevented me from suicide for many years. Whenever I was depressed enough to truly and completely want to die, I was too depressed to put the movements together to kill myself. What became dangerous was when medication made the movement part go away but not the depression and suicidal thoughts — then I was suicidal and fully able to attempt it, which I did. Fortunately I suck at suicide.