HOLY CRAP. Why don’t mainstream autism organizations do things even remotely like this?!??!!! I mean seriously it’s like we are stuck in the dark ages of doom and gloom bullshit. (And Down Syndrome actually makes autism much more likely — like 1 in 10 — so it’s not that our lives are utterly alien to them.) After all this Autism Awareness Month BS I’m actually crying at the thought of a mainstream organization using the good things out of our lives instead of the bad ones while quoting statistics. And ACTUALLY BEING ON THE BOARD OF DRIRECTORS. Fuck.

If you believe that there is such a thing as a person too disabled (in any way) to be a productive member of society? Then fuck off. Don’t talk to me. Don’t follow me. Don’t expose me to your company. I don’t care who you are or what relationship you think you have to me or what you think of me as a person. I don’t want you around until you grow some basic ethics.

World Down Syndrome Day: Choosing Sides

I am good at adjusting to situations. Possibly too good at times. I don’t always know when a situation is worth adjusting to and when it’s worth fighting. Despite the intense will I sometimes have, despite sometimes accruing a reputation as someone who fights too much, there’s a kind of passivity to me as well. Almost a physical passivity, rather than a passivity of the will. And I have all kinds of mental tools that help me to passively adjust myself to a bad situation rather than do anything about it. In fact, when I was first diagnosed with autism, my shrink’s number one goal was teaching me how to actively change things rather than passively adjust to them. I don’t think he did very well.

And yet.

Despite passivity so extreme it’s been thought of as pathological, I seem to have something hard and unbending underneath it all. Something that, if anyone tries to push it, will push back with everything it’s got. And it’s remained there and gained strength despite circumstances (like breaking under torture) that you’d think would eliminate such a thing.

That hard part of me is something that a lot of passive people I’ve met haven’t got. Even people less passive than me overall. And the effect of not having it is that even a lesser level of passivity runs deeper. Because my passivity, for all its intensity, really does seem a very physical thing. A thing on the surface, and quite a distance below it, but not something that extends down into all of me. Some of it is the passivity that comes with “autistic catatonia”. Some of it is more of a purely mental and emotional passivity — a repertoire of strategies to allow myself to adjust to damn near anything. But there are large parts of my personality that it doesn’t touch.

And at that horrible rec program is where I discovered both the limits of my passivity, and how much of my well-being relies on having at minimum a couple people around me who know and understand me.

I’m told that just about everyone’s well-being depends on others. But — because of those passive elements — I never even thought of that. They took me out of my normal life and the people in it and isolated me from the real world. And all I did was keep trying to adjust. Sometimes what kept me going was the knowledge that at any time I could text my closest friend. I’m good at finding knowledge that keeps me going. That’s part of my strategies for handling things.

And then. They told me cell phones don’t work there. They said I have no access to a regular phone except when they say so. (Even when I was coughing up green stuff. Even though they knew that with bronchiectasis that’s very serious.) And combined with being sick and weakened, their pulling the rug out from under me finally hit the place where I couldn’t bend anymore. And I cried so hard I was screaming.

I tried to tell them how awful it was that I had no power to contact the outside world. I begged them over and over to contact my power of attorney for healthcare. They didn’t. They also treated me like there was something very wrong with me that I didn’t like being forcibly isolated from the outside world.

And I believed them.

I believed them because when you are isolated from the outside, your entire world becomes what you can see in front of you. You lose your bearings. You have no other frame of reference.

Most people have no idea how much their ability to see the world as it is depends on being surrounded by people and things that allow them to know this stuff. And even when the person has few to no other people around, that’s still not the same as being around people who feed you a steady stream of lies and isolate you from anyone who could tell you otherwise.

And that’s what happened. They told me that there was no reason at all that I should be upset about being isolated from the rest of the world. They told me that my being upset proved that I was an untrusting person who sees the worst in people. Because there was no reason — no reason at all whatsoever — to be upset about this unless they were abusive. And they were so clearly not abusive — because they had degrees in special education, worked in the school system, delivered babies, were allies to the self-advocacy movement, and a whole litany of other non sequiturs — that any mistrust on my part was clearly a personality flaw and not a reasonable response to an awful situation. They spent hours trying to convince me of this.

I’m just glad I realized I was sick enough to die, and got them to send me home. A doctor later told me that with my oxygen levels I would have belonged in the ICU if I hadn’t figured out how to use my bipap to support my breathing. And yet if I hadn’t heeded my body’s warning signals… I don’t even want to think that one through. As it is it took multiple courses of antibiotics to cure it. I was also told that the rec program’s refusal to let me rest probably weakened my immune system so badly that I came home with not one but three infections in different parts of my body.

And yet I really believed them that the trouble was with me. The last thing I told them before I left was that I would come back later and prove that the only reason I got so upset there was that I was sick and not myself.

No. The reason I got so upset was that the place was awful. And that the only thing keeping me sane was the knowledge I could contact someone on the outside if it got bad enough. And then they took that last thing away from me and I completely lost it.

But in their world, the problem was how I thought of them. And you know… I see a lot of situations where people try to confront someone with privilege on something harmful they’re doing, and the person turns it around and goes “how dare you accuse me” and makes it about that. And on tumblr or something, that’s an annoyance. Even when it’s a big annoyance. Even when the person is contributing to ideas that have horrible consequences. It’s still mostly an annoyance — it’s a few levels removed from the actual physical consequences.

This was more than an annoyance. This was people with immediate, real, direct, extreme power over people with developmental disabilities. Using that power in ways that ranged from severely emotionally damaging to potentially deadly. And refusing to admit that they had even a teensy bit of power over us. This wasn’t an annoyance, it was an emergency.

Take Nancy, for example. Nancy was an old woman with a developmental disability and severe communication problems. She had a precarious, wobbly gait. And she fell. A lot. Sometimes she managed to sit down and roll before she fell down (I know the trick). Other times she fell in ways that were completely out of control and obviously painful and dangerous.

Nobody ever inspected her for injuries after a fall. All they did was yell at her. They yelled that she needed to stop faking and get up because she had her own two feet and could walk on them just fine. They refused to help her up. They refused to give her physical support to walk. They refused to do damn near anything for her ever. They constantly yelled at her for doing things the rest of us were doing. Sitting down. Standing up. Everything she did was wrong. I don’t think anyone ever talked to her except to tell her what to do or tell her she was being bad in some way.

This was the first thing that made it past my passivity. I always find it easier to stand up for others than for myself. I told them that they were doing something very wrong. They told me that it was okay because her parents told them to do it like this. They told me I could talk to the director who had known her for ages, and she could tell me what was really going on so I wouldn’t be upset. They were abusing an old woman for falling and they thought the problem was I was upset.

And I’m pretty sure what will happen to Nancy. She will die. The problem will turn out to be something she’d had for a long time, something they could have treated, but that everyone dismissed as attention seeking behavior. It was obvious to me that she was in a great deal of pain that nobody was treating or paying attention to. It was there in her every movement. And even when she started retching in the middle of the night, their response to the woman who went for help was “Go back to sleep. She’s asleep. Nothing’s wrong. Mind your own business and don’t get out of bed again.” They didn’t even look at her.

Yes this was a place that told adults not to get out of bed. And they believed themselves not abusing power in any way. (They also told me it was bad that I needed to pee at night because it was waking staff up.)

And the thing is nothing had to be like this. Most of the staff were good people. But when you’re employing good people and telling them that a condition of their employment is to control another group of people, good people transform into abusive people almost overnight. It takes a strong will and a deep understanding of what institutions do to people, to resist it. But oh I forgot that the problem wasn’t that they were acting like an institution. The problem was that I pointed it out. In fact in general I was the problem.

And you know, the first thing I said that really set them off was how deeply upset I was by having no means of direct contact with the outside world. This hit some kind of nerve. They told me that because they were such good people, I had no reason to be upset. I tried — still passive — to explain my history in mental institutions. I tried to frame it in terms of past trauma. I tried to make it about me, not them, because I was too afraid of them to speak plainly. And this still was not good enough. And that they were so touchy that they couldn’t even accept that this isolation triggered terrifying memories, told me something was very deeply wrong and made me panic more and cry harder. Because I know that good places are not so defensive that they cannot even accept that something they did is inadvertently setting off bad memories. When someone can’t even accept that level of explanation, it’s seriously time to panic.

So somehow no matter what I did and how sensitively I tried to tiptoe around their feelings, they always twisted things around until it was my fault. (And they actually refused to let me talk to my case manager after, in a time crunch when looking for words, I dared to actually say that my words were being twisted to mean something I never said. I can’t be tactful at high speed, I can’t even communicate at high speed under pressure.) At one point they even pulled me into an argument about whether I “took” the phone or “grabbed” the phone. No matter what I said — and I was not at my best, communication-wise — they could find some detail to use against me. And they could not stand even the slightest hint that they had power, or abused power, or resembled an institution in even the tiniest fleeting way. And I was the problem, period.

When I got back, I was really horrified by one thing: That my ability to handle things was so heavily tied to being around the right people. I was still in a frame of mind that told me if I could not emotionally adapt to something then I was the problem. I wanted to be strong enough to take anything, anywhere. But my friends opened my eyes to the fact that we are all dependent on context around us being right, including the people. That this is not some special level of vulnerability on my part, that virtually everyone is vulnerable in the same way. It always amazes me when I find out that my problem isn’t me, it’s the way my whole species is set up. Because I always default to myself being the problem. I rarely think about myself as part of a species that has pretty close to species-wide weaknesses. I expect myself to be tougher. Not because I think I’m better than other people, but because I either forget to bring other people into the equation, or have no idea what’s normal.

But I know now: I can’t go off somewhere with no outside contact and expect to be okay. And I cannot pluck myself out of my normal circumstances and expect to function the same as I would normally. These things don’t happen. Maybe this will stop me overestimating myself all the time. Also, and most importantly, I have to stop getting myself into bad situations and thinking I’m the only person affected. That happened twice last summer and I realized how much it affects other people when bad things happen to me. I also realized I need to actually care that I’m in danger, which I generally don’t.

I’m now aware that when I really connect to myself on certain levels, I am not passive at all. The trouble is remaining connected to that. It’s hard work, and way too easy to slide into my usual habits if I’m not being careful. I thought it would be one breakthrough in that regard and I’d be fine. Instead it’s a continual struggle against decades of practice at being otherwise.

“Discussions of ‘special educational needs’ (SEN), ‘children with SEN’ and ‘inclusion’ continue to portray disabled learners as problematic ‘others’ to be tolerated and managed (Allan 2004). The neo-liberal prioritisation of entrepreneurship and autonomy create further problems for disabled learners attempting to negotiate an increasingly market-driven education system. This paper comes about as a result of eight-weeks spent as a volunteer in an organisation offering self-advocacy based projects to young people with the label of ‘learning difficulties’, and considers such projects alongside Deleuzoguatarrian Disability Studies discussions of socially just pedagogy. By drawing on Deleuze and Guattari’s metaphor of the rhizome, and considering desire as productive, it is argued that such projects have the potential to offer an alternative, more engaged and socially-just education to the one currently offered in schools.”

Jenny Slater, “Self-Advocacy and Socially Just Pedagogy”

I can’t read a word of this. And this is just the abstract. The article is just as bad. What makes this worse is that it’s an article about people with cognitive impairments of types that generally make this kind of thing really hard to read. And I suspect this is even hard to read for any random nondisabled person too. As a person with bad receptive language it makes my brain go “…….. ….. .. ……. um……… wibble?!?” There’s just something very wrong going on here.

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.

So.

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.