Sunday, December 1, 2013

"I Wish I Knew How It Would Feel To Be Free"

It started some months ago when I, quite by accident, discovered that one of the men I work with (he's autistic, he doesn't use speech to communicate) can indicate "yes" or "no" by pointing to (well, usually by grasping and releasing) one of two index cards. He doesn't need my help (other than to hold the cards in front of him). 

He doesn't always do it. In fact, sometimes he very pointedly chooses not to do it. Sometimes he crumples up the cards and tosses them aside. Which is why they're laminated.

I think, understandably, his feelings about communicating and being heard are deeply conflicted. Even if he were to begin pointing at more words and letters to communicate, the likelihood he'd be listened to is...well...slim. The people in his life are largely committed to seeing him as severely disabled. Period.  

We've been sitting in that unsettled, anxious, frustrated, what-the-hell-do-we-do-now state for a while. I can see he wants to say more. He picks up the letter boards I keep nearby, but he gets upset and then tosses them on the ground.

Aside from trying to come to terms with the whole idea of actually communicating with me and having me understand him- overwhelming in and of itself for him, I think- there's the fact that it probably won't change his life in any appreciable way. 

When it was time to stop we walked back to the unit and I dropped him off in his group (letting him know when I planned to return for his next session). I went into the office and signed him back in, and then I walked around so I wouldn't upset him by walking back through his group. He doesn't tend to like when we have to end.

But he knew I was there. So he left his group (much to the dismay of his staff) and wanted to follow me. He doesn't usually do this, so I sat with him for a little while in the back hallway. 

I wasn't sure what to say, but the words that ran through my mind were the title of a Billy Taylor song, I Wish I Knew How It Would Feel To Be Free

I didn't remember much of the song, and I wasn't sure it was something I could conjure up sitting there in the hallway. All I could think to offer him was the reminder that "nobody can take away who we are inside." 

We sat quietly as the shift changed and after a few minutes he got up and headed back in to his day area. 

Sometimes this work is really hard. Really, really hard.