12:26am February 12, 2012

➸ Tickled Pink: loverwife: When people talk about you thinking you can’t hear. When...

loverwife:

When people talk about you thinking you can’t hear.
When you can.

This probably isn’t what you meant… but it’s what came to mind.

I used to work for a preteen girl and her family. The girl was nonverbal, and people had no qualms talking about her and other topics around her that you would never do in front of a child who was verbal and “clearly understood”. Who wasn’t considered a nonperson because of her nonverbal status.

Drove me up a wall. She could understand speech and even responded to news and being told certain things, recognized people, etc… I couldn’t see how they would say the things they did in front of her. Even if it was 100% sure she couldn’t understand.

It’s kind of amazing to me. The things people say when they think you can’t hear.

I used to open speeches to staff in the DD system, by reciting a litany of confidential or otherwise presumed-private shit people had said in front of me. Always in contexts where it was some combination of thinking I couldn’t understand, thinking I’d never be able to tell anyone, and thinking nobody would believe me if I did tell. Then I’d say, “If you don’t want something you’ve said to turn up in a public speech one day, then don’t say it in front of us.”

Because I’ve heard (and continue to hear) so much crap it’s unbelievable.

I shared a staff person with this guy whose main diagnosis was “profound mental retardation”, but he also had other stuff going on. And yes, he owned and lived in a house. The state institution he grew up in kicked him out for destroying too much of their property. That’s my favorite story of how someone got out, and my favorite example of why “so severely disabled he just had to live in an institution” is bullshit. Anyway.

So our mutual staff person saw some other staff talking in front of him like he wasn’t there. And she leaned over to him and whispered “I bet you hear a lot of funny shit when people talk in front of you like that.” He laughed his ass off.

That same staff person used to have to prevent me from doing violent things to people who treated him like he couldn’t understand them. This was before a combination of increased self-control and the progression of a movement disorder prevented me from lashing out physically.

And very little pisses me off more than hearing that stuff. If someone does this in front of me, and I have the ability and energy to do so, I will say something.

Sometimes I don’t have to say a single word to get my idea across, either. One day I was at a sheltered workshop. I didn’t work there, I was just there with staff waiting for them to pick someone up. That happened a lot within that agency, one staff picking up multiple clients to save time and money. Both staff and disabled people at that place had instantly pegged me as low functioning, and nothing I did seemed to change that in their eyes.

So there was this autistic guy there, another person considered low functioning by the group in general. And he made some repetitive noises at the same time as moving his hands in a certain pattern. A staff woman immediately mimicked him. Her voice had a mocking tone, and another tone I don’t fully know how to describe. It’s the same tone that staff use when they talk to themselves in front of you, thinking you’ll never understand.

I didn’t have my communication board with me and wasn’t in a position to use it if I did. But I was furious. So I did something that’s normally very difficult for me. I turned my entire body until it was facing her, and I glared straight into her eyes. Into that glare, I poured every bit of awareness I had. Awareness of what she was doing. Awareness that this man was aware of what she was doing. Awareness of her cruelty. Awareness of the hurt this man and I were feeling. All of that and more, I stared until I hoped it would burn these things into her brain.

She flinched several times. She was terrified. She knew that we knew. She knew that we were justifiably hurt and mad. She didn’t want to know but I didn’t leave her any choice in the matter. Because she may have flinched, but her eyes always crept back. My rage allowed me to sustain the eye contact, and I think it was the most successful eye contact I’ve ever experienced. Because it was used for a purpose, not just for looking more normal.

I hope she never forgot that day. I never have. I could tell she didn’t expect me to demonstrate awareness of anything. That was, I suspect, what shocked her the most. An unperson became a person to her and she couldn’t handle it. I hope the knowledge stuck. I don’t know whether I can count on her to actually care, but I hope she, at minimum, feared to ever pull something like that again. Because that is never okay.

I’ve heard people talk like people can’t understand more times than I can count. Both about me and other people. It never gets easier.

I met one woman who had a horrible story. Basically, she’d learned to type. She’d proven her authorship over and over by talking about things that only she and a limited amount of other people would know. Gradually, people stopped talking around her like she didn’t understand. They knew that what they’d said might come out in her typing later, and they had grown to respect her more than that. Then, for various reasons, new staff at her group home were taught to believe that she wasn’t really communicating, and her access to typing was removed more and more. Now, people began talking in front of her like she couldn’t understand again. She called herself the sometimes invisible woman: When people didn’t believe she could understand, the person she really was became invisible again.

Her staff person was the first person ever who, while I was completely unable to show even a hint of understanding through typical channels, talked to me like I was a human being. Without a hint of the doubt that shows up in people’s voices, even people who know me well, when they wonder deep down whether I can really understand them when I’m unable to respond in ways they can see. That meant the world to me.

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