Thursday, September 5, 2013

Bodies and Behaviors

Defiant is being pre-empted this week. I apologize to my regular readers for doing this, but the attempted murder of Issy Stapleton is local news for me, and I can not stand by and let this incident pass without comment.

Issy Stapleton's mother went to college just a couple of blocks from where I went to college. Her alma mater has done a staged reading of one of my plays. The Great Lakes Center for Autism Treatment and Research is near where I still live. It, along with several other behavior-based autism treatment locations, are practically in my backyard.

I sit here quietly, writing about my independence on the internet while the shadows of therapists who believe that my difficulties are behaviors pass by my window. Any one of them would probably recommend me for a 48 hour hold if they witnessed me during the darkest parts of my year. They would probably want me in a long-term residential program if they knew about the darkest parts of my life.

Our bodies are not our own, and because of that, neither are our lives. We are written about as burdens. When we are at our most vulnerable and our least able to consent, our parents share the details of our medical histories online. Sometimes they include pictures. I linked to proof of this when I talked about Alex Spourdalakis. I will not link to it now. Issy Stapleton's mother does not need the extra traffic to her blog.

Issy was home for less than a week after she was inpatient at the Great Lakes Center for Autism Treatment and Research. The facility itself would have called her a resident. I will not. Residence implies home. It implies that she had a space to make her own. Neither of those things happen when other people are determining every aspect of your life, from your food to your daily activities to which modes of self-expression are "appropriate" for you to display.

I do not know which of these things the Center monitors and attempts to change. That is not important. What is important is that, whether I agree with their methods or not, they only worked with Issy for a few months. Then she got to go back to her parents' home. She was there for less than a week before her mother tried to kill her.

Even if we were burdens, how much could we derail your lives in less than a week?

I have a partner who has been bedridden for months at a time. Who has survived a brain surgery and prolonged status epilepticus. Who has become temporarily paralyzed on her left side and needed me to move her up and down stairs, into the car, on and off the toilet.

She is not a burden. Occasionally, caring for her has put me under stress. Once or twice, it has led to me taking less work than I would like and scrambling to make ends meet.

I love her. This is what I do.

When I have my problems and my bad times, she does things for me that I can not do for myself.

Neither of us has ever considered killing the other one. Both of us have been dealing with each other's ups and downs for years.

Issy Stapleton was home for less than a week.

Already, there are local supporters here in Kalamazoo rallying by her to try to get the charges dropped. They are saying that she deserves compassion for trying to kill her daughter. They are saying that it must be so awful to be a parent to people like us that recourse to murder should be excusable. They are pointing to the fact that she tried to kill herself as proof that she did not know what she was doing.

That she tried to kill herself is the ultimate proof that she knew what she was doing. If she had died, then she would have successfully avoided taking responsibility for what she was doing.

What she was doing was attempting to murder her daughter for not being easy to raise. Now I'm going to tell you about what it's like, being easy to raise. Specifically, what it's like when you're being easy to raise and you are autistic.

To the best of my knowledge, I was not diagnosed as a child. I do not know for sure, and I have suspicions I will not give a public voice to because the things I have heard are vague and far-off noises. What I do know is that there was no mistaking the differences between my behavior and the behavior of other kids. I have memories going as far back as when I was six years old. These memories are of my parents openly commenting on how unusual it was that I could find hours of entertainment in the sorting and re-sorting of sticks or baseball cards.

I also have memories of my parents praising me for being easy. My mom was a teenage mother, and she had two children before she was twenty-one years old. I can remember being left in the family station wagon while she went grocery shopping and being told to sit still. The car would get very hot, and sometimes she would be gone for so long that all of the other cars that I could see would leave and be replaced with new cars before she came back. My little brother would act out and hit me or blow his nose on the upholstery. When he got older, he would leave the car even though we weren't supposed to.

Sometimes, she would park the car and the clock would say ten. When she came back and restarted it, the clock might say eleven. Sometimes it said twelve. More than once it said one.

I staid in my seat. I was easy. She praised me for it, and made me understand that what I was doing was exactly what all good children did.

I wouldn't do that to my dog, now. Then, I smiled and thanked her. Sometimes she brought me a big piece of Colby cheese from the deli, to show how happy she was. It felt good to make my mother's life easy. The praise and the reward helped me to understand the rules, and living by the rules kept my life easy.

Sometimes, people who don't understand autism think that following rules that I've learned is a symptom. It's not. Left to my own devices, I will wallow in chaos and act out according to whatever impulses I have. I will create art. The rules are not symptoms, they are coping devices. They allow me to remain easy.

Easy in the way the Issy Stapleton was not. And we can see now how that turned out.

I was not always easy, either. The times that I was not easy helped to emphasize the importance of the times that I was.

I can remember being very hungry once when I was five. We were having pizza for dinner, and I was excited because it was Tombstone pizza and I did not know that Tombstone pizza was very cheap. I just knew that it was not Tony's pizza and that there were commercials with cowboys in them, which made me excited to have Tombstone pizza. By the time it was ready to eat, the smell was making me twitchy and the fact that we were having fast food meant that I had not gotten my afternoon snack that day because it was not healthy to snack and to eat fast food both.

When I got my slice of pizza, I was told that I could eat it in front of the television. So I did. I set my plate down on the edge of the coffee table, and I went to town, picking off the pepperonis first to savor them apart from the pizza. As I was finishing the last slice of pepperoni, my father came downstairs with his pizza. When he saw me eating, he yelled at me that I knew better than to eat before we prayed because we never ate before we prayed.

He did not believe me when I said that I forgot, because I never forgot. I cried. He sent me to my room. Remember that I was five.

After a long time, my father came up to my room. He was not angry any more when he came up to my room. He explained to me that I was so good at following the rules that I was almost a perfect child. I had a better memory at five than anyone else in our family. I already knew how to read, and he was very proud that I chose to read the Bible cover-to-cover instead of reading kids' books. He apologized for yelling at me, and he told me that it was because I was so nearly perfect that it was hard for him to deal with me when I made mistakes.

He told me that my excellence made him less tolerant when I failed because it was so unexpected, and that I had to understand that because people get used to things staying the way they are. Then he let me eat the rest of my pizza. But first, he made me lead the family in a prayer even though the rest of the family had already eaten and my pizza was already cold.

I did not receive behavior modification therapies from a trained specialist when I was growing up, but it would not be accurate to say that I did not receive behavior modification.

I learned how desirable it was to be easy. I learned the consequences when I was not.

I'm a cryptorchid, which means that I had an undescended testicle. I was very young when they wanted to operate on it. I made sure to be easy. I'm glad they operated, because I have learned as an adult that cyptorchids have a higher rate of testicular cancer in the undescended testicle than the rest of the population has. For years after that operation, though, I was expected to present my genitals for inspection whenever I went to the doctor's office.

I made sure to be easy, even when I did not feel like taking my pants off. Even when we were seeing a new doctor for the first time and it was not the doctor that did my surgery. Even when the doctor was a lady and I felt funny about it. Being easy was the rule.

When I was in fourth grade, my mother was hospitalized. It took seven weeks for them to find a medication for her and send her home. Even though she tried very hard to get better, she had repeated psychological disturbances that led her to tell me stories about how my friends had been murdered. Most of the time, this was her way of trying to teach me moral lessons.

For example, there was a little girl that lived behind us when I was in first grade. Her family moved down south after the school year ended. When my mother needed to teach me about peer pressure, she told me that that girl was babysitting for a family and her friends wanted to come over and party. My mother told me that she let her friends into the house where she was babysitting, but they brought drugs and alcohol. She told me that when my friend Brenda tried to tell them that they could not drink and smoke because she was babysitting, that her friends tied her to a chair and shot her in the head with a pistol that belonged to the family that lived there.

That was supposed to be my lesson about peer pressure.

She also told me a story about a girl who was invited to a slumber party. She wasn't very popular, but she was very pretty. My mother told me that the other girls at the slumber party threw blankets over her and then beat her with a tire iron. That they put the girl in the trunk of the car and drove around with her all night, stopping only to open the trunk and beat her again. She told me that around dawn, then drove into a field and pulled the girl out of the trunk and covered her and the blankets with gasoline before lighting them on fire. She told me the girl's last word was "Mama."

That was supposed to be my lesson about trusting people I did not know well.

By the time I was twelve, these rules were pretty well established, at least for me. My mother could break her end of them whenever she wished because she was the mother and I would understand when I was older. My father's only rules were about making him comfortable, so he could not fail to hold up his end of those.

Between my mother's parables and the times I was banished to my room, I knew why it was important to be easy. It was important to be easy because if I was not, then I got locked up and I ate my food cold and they came to lecture me about how much better things would go if I was easier.

When I was twelve and my mother insisted that she had to check on my genitals because I was going into puberty, I did not dare to tell her no even though she was not a doctor. Her hands felt disgusting, and I could not look at anything while she did it so I read the titles on my bookshelf. Later, I took a bunch of books to the used book store and got new ones.

After that, I decided that it had become too big a burden for me to be easy, so I stopped. Unfortunately, one of the rules I had learned was that my father would beat the shit out of anyone who laid hands on a woman. My mother knew this, and she started physically putting herself between me and the door when I tried to leave the house during one of our fights. Sometimes, she used this knowledge to herd me.

I got good at running out of the house before she could get herself in a position to block my path. She got good at using a tone of voice that made me stop moving because I would panic.

One day, she used that tone of voice to command me not to go out the front door. Instead, I ran up to my room and jumped head first out the window. I was following the rules--the window was not the door. I was being easy, but I was also doing what I needed to do to be apart from her.

We should not thank people who want to train us to be easy. Nor should we have compassion for people who feel despair when we are not. People who emphasize the need to change our behavior in order to make themselves more comfortable are not helping us, they are abusing us. When they feel despair at our resistance, the outside world should be on our side cheering us on.

Instead, they rally to show compassion for the people who would murder us, or who would lie and tell us that our friends were murdered when they want to make a point.

If autistic people were citizens fighting against a government that was so authoritarian that it jailed citizens for having negative facial expressions, then our media would write about how important it is to protect democracy and to set international standards of conduct by bombing our government out of existence and then letting us set up a new one in the rubble. The fact that we are fighting against parents who want the very same thing should not make the press less resolute in their support for us, but it does.

We are trapped by our bodies and our behaviors. Not because either one is causing us problems, but because other people do not understand either one, and they blame us for their own understanding. When our headbanging is viewed as defiance but our caregivers have neglected us so badly that they have not detected our months-old head lice, we are being tyrranized, and the people who have convinced our parents to view our behavior as an intelligent defiance while simultaneously arguing that we need not give consent to their "treatments" because we are not competent are criminals.

Our "condition", if that is the word we must use, is a condition that affects the way our senses give our brain information. Any communication problems we have are because of the differences between the sensory input we receive and the expectation other people have that our sensory environment is the same as theirs. We are not trapped. We are not isolated. At least, not any more than any blind or deaf person is trapped or isolated.

How horrible would it be if parents of blind children corrected their defiant refusal to see by locking them in rooms and taking away their privileges, or by subjecting them to repetitive and uncomfortable training sessions? The answer is: it is exactly as horrible as when parents of autistic children do it.

How horrible would it be if parents of deaf children killed their children and themselves because the children's refusal to learn to hear put an undue burden on the rest of the family? The answer is: it is exactly as horrible as when parents of autistic children do it.

Every day, misguided parents of autistic children (and their therapist enablers) attempt to cure us with behavioral "therapies" that are illegal when they are used to try to force children not to be homosexual, but that are somehow perfectly sensible when the children they are used against are guilty of nothing other than having brains that are wired differently. (Wait... but...)

The children are not the burdens in these situations. The children are the ones carrying the burdens.

Do not sympathize with our abusers. Do not rally for them to be released from prosecution when they commit crimes. Do not excuse our murders with hand-waving and mumbling about tragedies and who we could have been if only.

If you do that, you are one of them. You are tyrranizing us. You are treating us as less than human. More and more of us are growing up, surviving, and seeing you for what you are. And we are coming for you. We are not going to tolerate this state of affairs any more. We are taking back our bodies, and we are not interested in putting up with your behavior problems anymore.

Issy Stapleton is one of us. We will not let you free her would-be murderer without a fight. We love her too much for that.