3:26pm December 18, 2011

Across The Divide part three

[This is Part Three of Across The Divide, a long article I’m breaking up into sections so it’s more manageable.  Please read the parts in order so it will make sense. Here are the links to the other parts:  Part One, Part Two, Part Three (you are here), Part Four, Part Five, Part Six, Part Seven, Part Eight.]

I still remember like they were yesterday, two utterly contrasting experiences.

One.

I am in my first mental institution.  In the dayroom.  Can’t move at all.  The room is full of people.  The people watch, doing nothing, as another patient takes his toes and sticks them up my butt, and wiggles them around in there.  Later, when I can move again, another patient comes up to me. She makes sure nobody’s watching and whispers, “When you were out of it a guy took advantage of you. I just thought you should know what happened.”  As if I hadn’t been there or noticed what was happening.

Two.

I am at an autism conference just after giving a presentation.  I’m overloaded, I have a migraine, my eyes won’t focus or work together.  Larry B. is similarly overloaded after his presentation, and is pacing nearby in a complex pattern, wiggling his fingers and reciting random combinations of phrases.  I have propped myself up on a wall so I don’t fall over.  Larry and I peripherally acknowledge each other’s predicament without any signals that most people can see.  Sandra R.’s staff person walks up to me.  She tells me how much she got out of my presentation.  I cannot acknowledge her in any way at all that a nonautistic person could see.  To her I must look like I’m staring through her.  I panic, knowing how most people treat me when I’m like this.  She doesn’t hesitate, shows no sign of nervousness or awkwardness.  For the first time in my life someone is treating me indistinguishably from how they treat other people, when I am not able to respond to them.  I would cry with joy if my emotions were at all connected to my tear ducts at the moment.  Instead I just lean there and try not to fall over.

The difference between these two experiences is staggering.

Some of my worst experiences have happened when people who have only seen me at my most interactive, see me unable to communicate with them. It’s then that I find out what they really think of me.  They sit there right in front of me and say things they would never say if they thought I could hear.

I can remember lying on my couch in my own urine with the fabric feeling as if it was ripping through my skin after hours of non-movement.  When a staff person discovered me this way she at first tried to talk to me.  When I didn’t respond, she started walking around the house saying terrible things about me that she thought I couldn’t hear.  She was upset that she couldn’t take me to Carl’s Junior where her friends worked, and buy me a meal so I wouldn’t tell anyone that she spent her whole shift every day gabbing with her friends.  She smelled the urine but wouldn’t do anything to help me.  Just ranted insults about me, at no one in particular, because I had the audacity to freeze up and piss myself when she would rather be slacking.

My friend reported her.  It was her word against mine, even with the urine-soaked couch and the pressure sores.  She was not disciplined in any way.

You see what people are really like, when they think you can’t see them.  It’s scary.  People don’t want to believe what you’ve seen.  They want the world to be better than it is.  When they think you can’t see them, people think you’re a thing.  Not a person.  I know this.  My cat knows this.  Most people don’t want to know.

I shared a staff person with a guy named Jon.  He is blind and has no verbal communication beyond six signs in ASL, and is presumed severely intellectually disabled.  He achieved the amazing in getting kicked out of a state institution into his own house for costing them too much money by destroying clothes and bed linen on a daily basis due to excruciating and untreated physical pain.  People always talk to him like he isn’t there.  One day our staff person saw two other staff talking like he wasn’t there.  She got up real close to him and said “I bet you hear a lot of funny shit, Jon.”  He laughed his ass off.

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