22 August, 2014

A fun experiment!

Imagine a rich, successful executive has a personal assistant. His personal assistant is knocking at the door in the morning and he finally gets ready and comes down. The assistant says, "What took you so long? I want to go shopping."

The executive says, "That's not what I was planning to do today."

The assistant says, "Well, I need to go shopping and I haven't done it in a long time. Come on, it'll be fun." She proceeds to bring him along with her as she goes shopping, does all her errands, and hangs out with her friends. What's in it for him is that he gets a chance to get some coffee or something.

If this seems weird and confusing, instead imagine that a disabled person has a personal assistant who is behaving this way. I don't have to imagine because I know lots of PAs who do this. It is jacked up, but completely socially acceptable. Why?

I'm guessing because the client is not able to use words to tell them to stop, or is easily convinced to be agreeable and not express their real preferences, or because if they do complain, the PA can just say, "That person just isn't patient or empathetic to my needs because of their disability," or, "That person is just confused and being contrary because they have dementia." AND, because clients are often not able to fire their PA, or at least can't do so immediately/directly. (For example they might be able to tell the agency providing them services that they don't like this PA, but if they need help eating, it would take a lot to just tell someone, "Okay, you're fired," in the middle of dinner. Especially if someone needs a PA with them at all times, that makes it hard to stand up to someone. Or someone might think, "Well, this is kind of annoying, but it could be a lot worse. I might not find someone else who is friendly and knows how to handle all my medical needs.")

I just think it sucks, a lot, that some PAs think they can just schedule their client's life around whatever they want to do. Even if someone can't communicate very much and you have to guess what they want to do, you should still do that, not just pretend that you think your blind client wants to go to a silent movie with you or whatever. You are doing a job. You are getting paid. If you want to do whatever you want all the time, then don't have a job, because that is not what a job is, and in no other job is it so acceptable to railroad over the preferences of the person who should be your boss.

07 August, 2014

Soft and lovely your way to a better tomorrow!

Around the time I first started this blog (when I still used it as an all-purpose blog, which I don't now) I spent a lot of time posting about tattoos I wanted to get. The one time I got close to getting one, I freaked out. I woke up in the middle of the night freaking out to my friend who was visiting me and who I was going to get one with. Now I'm once again on track to get a tattoo--tomorrow, actually, now it's getting to be Tuesday--and I have been waking up a lot.  I don't sleep well these days, except when I sleep for ten hours, so it's probably not the tattoo that is waking me up.  Still I end up thinking about it at those times, and tonight sleeping seemed so impossible that here I am writing this in a notebook at a diner at 4 AM.  So, let's talk about my tattoo.

It is a Jenny Holzer line in the Jenny Holzer font (Futura Bold).  I sort of wanted this for a while so I just hitched my wagon to Zoe's Jenny Holzer tattoo getting star.  Jenny Holzer is an artist who in the 70s and 80s did a lot of work where she would put really intense sentences on places like movie theater marquees and billboards.


(A movie theater marquee that says, "Turn soft and lovely every time you have a chance.")


(A billboard that says, "Protect me from what I want.")


(A bench that says, "What urge will save us now that sex won't?"

At first, I wanted to get one of the sweet-sounding sentences like "TURN SOFT AND LOVELY EVERY TIME YOU HAVE A CHANCE" or "SAVOR KINDNESS BECAUSE CRUELTY IS ALWAYS POSSIBLE LATER."  I agree with both of these wholeheartedly.  Zoe is getting "IT IS IN YOUR SELF-INTEREST TO FIND A WAY TO BE VERY TENDER."  It is, but lately I've been mentally slanting meaner--not out of a hatred for the human species (well, maybe a little) but mostly out of fear of appearing vulnerable or, even worse, actually being that way.

I was looking up a longer quote which I would never want as a tattoo, "YOU CAN MAKE YOURSELF ENTER SOMEWHERE FRIGHTENING IF YOU BELIEVE YOU'LL PROFIT FROM IT. THE NATURAL RESPONSE IS TO FLEE BUT YOU DON'T ACT THAT WAY ANYMORE."  It fascinated and upset me because it reminded me of how I've felt in some situations, but especially during my abusive relationship. I often have delayed emotional reactions, which is creepy, but it's something that has served me well when working with populations who can be very upset or combative, such as people with dementia who are in a lot of pain. I've stayed soft, lovely, and tender to avoid adding to the stress that's causing them to lash out at me. It works more often than not.

When I began my abusive relationship, I fell into acting the same way with my ex. When she got upset, I stayed calm and comforted her. It failed more often than not; I stayed calm for so long that I carefully studied her arguments for why everything that happened was my fault. Here was a job with no off days, and pretty soon I no longer believed there was anything wrong with her behavior, only with the fact that I and other people were constantly upsetting her.

The last time I talked to her, she told me I was confused about what had really happened and that everyone she talked to said I had abused her and that she couldn't possibly have abused me.  I argued weakly and kept asking if I was upsetting her. She said, "Don't worry about making me upset. It's important for you to be able to tell me what you think." I said, "Thank you, that's so brave and kind of you," as by that point I was unable to say anything that seemed like it might upset her. We were talking online and I knew she was in a public place; she had told me before that if she got too upset in public she might be taken to the hospital, where they would certainly kill her. In retrospect, the kind of feeling is like a nightmare where you are being threatened and can't move, but at the time I both didn't say anything that could upset her, and couldn't even bring myself to all the way think it. It would upset her if I was scared of her, so I while I was with her, I believed I thought she was unusually pure, innocent, and gentle.

A while before we broke up, I had been sent to the hospital to keep a longtime client with dementia from pulling out his tubes when he woke up, hurting and delirious in a strange dark room. Usually he knew me and we were close, but this time he just screamed, "Oh, oh, oh no," when I tried to keep him from pulling his tubes out. As always, I moved myself to skate over my natural human response of being upset, and stayed calm and friendly. But something rose up and pushed against my lack of reaction, which suddenly made me feel sick, scared, and exhausted. It was like I'd overdosed on calmness and couldn't take it anymore, and of course I didn't show it, but I almost cried.

THE NATURAL RESPONSE IS TO FLEE BUT YOU DON'T ACT THAT WAY ANYMORE. Can't, even, when you are frozen into a peaceful form.

It's been hard to square my previous almost self-righteously soft and lovely tendencies with the level of paranoia I've developed upon breaking up with my ex. Just as an example, two interactions with men. In March 2013, I was waiting at a bus stop in the middle of the night.  There was another person at the bus stop and I usually have a mental block on Autistic-looking movement in public, but it was so late and I barely noticed him, so I suddenly found myself run-Forest-running a few yards along the sidewalk. The other person at the bus stop, a drunk black man, began yelling, "I could kill you right now and no one would hear you. You're so fucking racist! You couldn't get away from me anyway." I felt bad that he thought I was running away from him because he was black, so I went and tried to discuss the subject with him. "I'm just a drunk guy eating prosciutto," he said hilariously. (He was eating it in the plastic wrap, from Safeway.) He asserted over and over that a)I was running away from him because he was black, and b)there was nothing to stop him from killing me if he wanted to. Without yielding those two points, he calmed down and we talked about various other subjects until the bus came. I considered this a success and hurried home to pat myself on the back. This was par for the course for me for most of my life.

In June 2014, I was at church when a white guy carrying a bunch of duffel bags sat down next to me in the middle of the service. He asked me to watch his bags while he got water from the water fountain. When he came back, he started whispering unintelligibly to me. Soon, everyone got up to stand in a circle, and he edged his way around until he was behind me. I walked to the other side of the circle and he waited, then came over to where I was. When I took communion, he made sure to get in line behind me and whispered, "I'll talk to you after this."

My hips locked up with fear and hurt for days. At the end of the service, as the guy started to ask, "You come here often?" another guy asked me, "Is that guy following you?" I thanked the other guy and walked across the church with him, then bolted out the side door. I hurried home to think about how much I hate everyone (except the other guy), and also to wonder what the first guy was planning to do. If he didn't care that I was trying to get away from him, what other things did he not care about? What was in the bags? And why was it me--did I look like someone who wouldn't ask for help in a public place? Did I look soft and lovely, pink and very tender, like I savor kindness because cruelty is always possible later?

It is always possible later. I went through a period recently where I suspected my best friend was a very bad person, that everyone knew it, that I was just in denial because I didn't want to lose someone I loved. If I fooled myself before I could do it again, an infinite number of times. I had to really write down the mounting evidence against my friend to realize it consisted of completely mundane details.

Where are all my nice qualities, I'm trying to say. I shudder to think of them. I don't like to think of myself holding my ex, helping her, how devoted to her I was. I remember thinking: well if this is going to be my life, using all my time and energy to take care of her so she doesn't get upset--well, that's okay, I guess. Helping someone is a worthwhile thing to do. And if I can turn softer and lovelier, infinitely ramping it up, maybe I'll stop upsetting her so badly.

It wasn't just my attachment to her that trapped me, but my attachment to the idea of people, especially Autistic people. Autistic people are so ashamed of needing any help at all, I thought--she wouldn't be asking me for these things if she didn't really need them. I felt happy to do things for her when so many Autistic people I knew, including me, often went without help. Autistic people of course feel so uncertain about the legitimacy of our feelings, so she wouldn't blame me for upsetting her unless it was absolutely, irrevocably my fault. It's just weird to think of myself colluding with her, and makes me feel stupid. She didn't threaten to kill me or my family, or even hit anyone--so why did I go along with all her stuff? Just because I really didn't want to make her upset?

I am still very idealistic and spend too much time imagining how I could get other people out of headfucks like this, worrying my friends could be in one and don't know it and therefore can't tell me about it; concluding all I can do is be there to help anyone who does start to come out of one. And also, this, which is the Holzer line I found that hit me like a steak to the temple*:


(My tattoo on my arm which says, "You have a sick one on your hands when your affection is used to punish you." Done by Zack at Sacred Rose in Berkeley, CA.)

It's drastically absolving, which is just the way I like them. It is strange, because I have support from several friends, but what always sticks with me is anyone who thinks I'm exaggerating. Am I just being cruel to a crazy person who didn't know any better? Did I create the system that controlled me? She never came out and said most of the things I came to believe, and if she did, she said, "I never said that" or, "I didn't mean what you thought." It's easy to feel there was something weak and over romanticizing in me, that predestined me to get turned into the negative space around her.

Is there a way that someone could have made me listen to reason earlier? I'm not sure. I like the sentence because it is hard to decipher--a friend put it in clearer order, "Someone who uses your affection against you is sick," but as it is written, it doesn't immediately communicate anything but confusion. I like to imagine someone on the train half resting their eyes on my tattoo, seeing it for several minutes before they really concentrate on the words. Oh. And, oh.

YOU HAVE A SICK ONE ON YOUR HANDS WHEN YOUR AFFECTION IS USED TO PUNISH YOU. I like the construction because it positions affection as normal, which I believe it is. Believing a disabled person wouldn't lie about their disability? Falling in love with someone who presents herself as exactly what you want? Being loyal to someone you think is dependent on you? These are all pretty ordinary, common things; it's taking advantage of them that's uncommon. All this to explain how, for me, this line contains all the other, sweeter-sounding lines, and is actually the kindest of all.