Tuesday, April 3, 2012

Awareness kills.

Yesterday they released the news of another child killed because of the ableism that the rhetoric of tragedy fosters.

Daniel Corby, age 4, was drowned by his mother in San Diego. Already people, including the media, are leaping to say that autism is so hard, no wonder she went over the edge. No. No. No. You don't say that. There is no excuse to kill people.

And this is what awareness does. The dominant narrative is that of hopelessness. The dominant narrative is of isolation and despair. The dominant narrative is that we are perpetual burdens, never to grow or be anything but 100% dependent. The dominant narrative is of tragically unhappy lives.

Awareness is wrong. We are, on the whole, not unhappy. We do not need the terror around how many of us there are. We do not benefit in any way from information that makes us sound like scary, alien beings. And we do not benefit from being seen as less than human, as things to be endured rather than people to be embrace.

Daniel could have had any of a number of futures. Now he has none of them. This is unacceptable.

Stop killing us.

Sunday, April 1, 2012

Survey for a friend of mine

Friend? Friendly acquaintence? Person who I do not hate and to my knowledge does not hate me? Whatever.

It's a survey about religious experience or lack thereof for autistics.

Back to your regularly scheduled depressing shit shortly.

ETA: THE ACTUAL LINK. Wow, am I a champion. http://www.surveymonkey.com/s/WTL6YQZ

Autism & Child Abuse: Both for April. Oh IRONY.

[Trigger warning: fairly graphic description of physical, emotional, sexual abuse.]

April is "let's make autistics hate themselves!" month. It's also child abuse awareness month, though you don't hear much about that. They talk all about the devastation wreaked by autism, but you barely hear anything at all about child abuse. That's fucked up, in case you were wondering.

There have been a couple murders of disabled people recently, murders by family, and the general caregiver reaction seems to be to pull into little self congratulatory circles and say that it can't be true, it must be an aberration, they and no one they know would do that. Parents of autistic kids are fucking saints.

Let me tell you, that is not the case. My parents are not saints, and my story is middle of the road based on what a lot of autistic people I know have said to me. Parents of autistic kids want us to shut up and not say this, they want to erase our stories, but that does no one any good. Trying to erase our experiences helps no one, even if it does make parents feel better for a few days. Don't dare step that close to abuse apologism, it is not acceptable.

Now I am going to tell you about some of the things my parents did when I was growing up. And yes, if you empathize with them I absolutely believe you are a horrible person.

So let's start with a brief description of my family structure, because it's kind of effed up: I have a mother, and my half-siblings' dad is on my birth certificate. They got divorced, I have a stepmom via my not-really-dad, and am on my second or third stepdad on my dad's side. Annnnd I have a biological father. Annnnnd a lot of siblings. Got all that?

We'll start by talking about when I was young. Both my mom and not-really-dad were spankers, by which I mean "kid, you have pissed me off and I am going to vent my spleen on your bony little ass," and, in my mom's case "also your face because your ass is really fucking bony." Offenses that got me hit until their hands hurt include such awful things as flapping, not being able to stop giggling, zoning out (both of which can be manifestations of seizure activity), arguing, and not understanding a statement or direction. That's right, these people were hitting a kid with language comprehension delays for not comprehending language. And I do mean hitting. Hard. Bruise leaving. I got a black eye and a cut across my cheek once from my mom; I was about 6 or so. The offense? Freaking out because shampoo got in my eye.

As things got more stressful and they divorced, these people got worse. My mother would absolutely lose her shit and hit me for no reason. She would scream and scream and scream at me, usually while I was stuck in the car with her. Then when I covered my ears or cried, she'd hit me and pull my hair. She did this once and then chased me around with a camera to try to get pictures of the ensuing meltdown, threatening to send them to everyone in school.

Go read that again. That's emotional abuse on top of physical. Contrary to what Autism Speaks thinks is a fucking awesome idea, triggering meltdowns intentionally to document it to show people is fucking emotional abuse.

But this was a thing she did frequently. She'd be pissed off about one thing or another, looking for a fight, and I wasn't exactly in tune enough to avoid her. Unlike my siblings I didn't have friends whose houses I could vanish to for days at a time, so I was stuck with her. She'd want a fight and she'd pick and pick, she'd file her nails in my ears-this is not a sound I can tolerate on the same bus as me, much less right next to my ears-and she'd start calling me disrespectful and yelling and demanding an explanation when I covered my ears. No explanation was ever ok, and she'd keep yelling and yelling until I lost my shit, then she'd keep yelling. Or she'd touch me and it'd startle me and that'd be the most offensive thing in the world, again with the yelling. Or she'd try to have a conversation, but it'd be about why I didn't have friends or couldn't be normal or wasn't girlier or whatever. Then no matter what my answer had a "tone" or my face had a "snotty expression." Nothing I could do was right.

Regardless of the method she used, the result was always a meltdown that would.not.end. She wouldn't back off no matter how I asked, & I wasn't big enough or strong enough to shut the door & keep it closed until I was about 14. She'd keep yelling and poking and trying to argue until I was completely nonverbal, biting myself, and too exhausted to keep crying. Then she'd try to hug me and all I wanted was for her to go. away. but she wouldn't. And she'd tell me it was love and she just wanted to "help me".

A favorite technique during the meltdown provocation procedure was to throw absolutely terrifying threats on top of the sensory poking and the demanding the impossible. The first time she threatened to have me put in foster care I was 7 years old. I believe it was over leaving the room because she was smoking and filing her nails (which she told me she loved more than me when I was 13), but that could be inaccurate. So many minor offenses got this treatment. As I got older she started threatening to have me locked up in a mental ward. I am deathly, deathly terrified of confinement and always have been. My mental images of both foster care and mental hospitals come from a combination of my mother's words and Lifetime television, which did not help the abject terror-and abject terror is not exactly conducive to calming down. My mother later leveraged this fear by instigating meltdowns intentionally-she always did love that game-and then calling police saying she was afraid of me. Now is a possibly relevant time to mention that when I last saw her, she had 4 inches and at least 50 pounds on me. Physically imposing, I am not, and lashing out at people who are not directly touching me is not a thing I ever did.

Ok, so now an interlude to talk about my not-really-dad and his new wife. I still went to visitation over there because we have the same last name and, to his credit, he was pretty awesome until he got remarried. His new wife resented the hell out me though-I still don't know why, really; it's not my fault the guy signed the birth certificate knowing damn well I'm not his.

My not-exactly-stepmom has really delicate little feelings. I have never been the most tactful of souls, and frankly, a grown woman allowing an 11 year old to upset her enough to storm upstairs until said 11 year old apologizes is not the most mature of things. The unpredictability & unreasonably high standards for knowing what would set her off were one thing.

The not allowing me to eat and dragging me antiquing is quite another. I'm not talking "not allowing junky snacks". I'm talking "over 24 hours without food." I'm talking "if you were that hungry you would have apologized for hurting Diane's feelings." It does not work that way. Trying to starve an apology out of a 12 year old is unacceptable. I had a seizure in the antique store-one of very few tonic clonics I've had aside from The Year Of The Seizure. I woke up to being yelled at for being an attention seeking little hobag. Again, I was TWELVE.

Shortly after that her son stuck spitballs on my bedroom door and he blamed me (which makes no sense) so I had to sit in the living room an entire weekend, except breaks every 6 hours to go to the bathroom. Not long after that I hurt her feelings again and she threw a corncob and a glass of wine at me. Another few weeks, and her son was spreading awful shit about me around the neighborhood, he denied it, and then I was again relegated to a chair in the livingroom for...I don't even know what the offense was. Just that apparently there was one.

The last time I went over there I was 14 years old. Stepmonster's sister and nephews were in town. A stepbrother, a nephew, a sister and I were down in the basement by the computer. My stepbrother told my stepcousin (well, semistep people but whatever) that it was really fun to see how far my arm would twist behind my back-this is nothing that I ever let anyone do, ever. So my semistepcousin twisted it, I said nonostopstop, and my semistepbrother told him to twist it further. My arm popped out of my socket.

All the way out of the socket.

Like any child who thinks their parents aren't utter sacks of shit would do, I ran upstairs, arm flopping, totally screaming-I have a high pain threshold, but dislocations that don't immediately reduce hurt like hell. My semistepmother and her sister started yelling at me for being a big baby and making a scene.

My arm was hanging entirely out of its socket. A scene was utterly appropriate.

I begged my not really dad to take me to the hospital to get it fixed. He refused. I begged him to take me home. Again, he refused. I walked 15 miles from his house to my mom's house, in the rain, on the highway, with my dominant arm out of socket.

My mother couldn't take me to the doctor until the next day because she was already drunk. To this day it has some laxity beyond what my other Ehlers-Danlosy joints have.

Now we're back to mom's house. As you may recall, my mom was a hitter. Most people who hit their kids stop when their children get big, strong, and/or bold enough to hit back. But not my mother!

The first time I fought back, I was maybe 12. I didn't even do anything that violent back; she was going to slap me for something and I caught her arm. This is the day I got my first dent in my skull. She was so enraged that I caught her arm that she threw me at my bed-at that point there was nearly a 100 pound weight difference-and jumped on top of me. She banged my head into the metal bedframe multiple times and punched me repeatedly. This is the first time I feared for my life at the hands of my mother.

About that time my stepdad started sexually abusing me as well. He had always been a yeller, which terrified me, but there is no terror like a giant coming to the night to try to make you respect him by using his penis as a weapon. I still have the knife I used to defend myself under my pillow, & carry three physical scars...one for screaming, one for fighting, one for biting.

He wasn't above physical intimidation in broad daylight either. On my 16th birthday I had to jump out the window to get to school because he had his 250 pounds planted against my door, keeping me inside, because I wouldn't bring up my laundry before school started. That was the day I knew my mom knew he was sexually abusing me-she said she did not want to hear anything bad about him unless he was stark naked about to rape me. And then I knew she knew.

But back to my mother. As I got older, and stronger, she wanted me weak. She had always given my siblings lunch money, but I had to earn mine through babysitting. Rarely did I eat school lunch from about 13 on; the option of taking a lunch doesn't work when there's nothing to take. My gymnastics coaches and some teachers took to feeding me, because I drop weight very quickly indeed. By this point most of my siblings were living with their dad or in their own places, so they didn't suffer the no-food-but-Hot-Pockets years.

My mother continued to pick fights, and continued to get physical. She learned restraint for work and thought it was a great idea to pick a fight with me to practice. Let me tell you first hand, it is impossible to breathe. Those are not safe techniques. They are completely not conducive to calming the fuck down. Putting your teenage daughter in a baskethold and dislocating both her shoulders in the process is abuse. Pulling handfuls of her hair out is abuse. Digging a knee into her back is abuse. I feared for my life from the time I was 12 on because of how unpredictable and how physical my mother was willing to be, and over things like sensory issues.

They terrorized me physically, emotionally, and sexually, all while telling me they loved me. They used systems, including the medical and law enforcement systems, to keep me in a state of constant terror. There are other things that aren't on here, there are details I cannot deal with writing out.

Do not dare tell me that parents cannot be monsters. I lived with monsters. I am not a monster for making you think about it. They are monsters for doing it, and anyone who tries to excuse it is as well.

Do not erase my story. Don't fucking dare say this shit doesn't happen. It happens every day.