Thursday, 18 August 2011

So, What Are You Thinking?

Sometimes I wonder what the people I’ve supported who have intellectual disabilities are thinking.

What Lengths Would You Go to in Order to Make Your Wishes Known?

The people with profound intellectual disabilities, who don’t communicate verbally and need a lot of assistance with activities of daily living…I’m convinced that if they were suddenly given the to communicate verbally, they’d probably ask us why the hell it takes us so long to pick up on the other ways that they try to tell us things, and then promptly tell us to fuck off.  I probably would – for all the times that people insisted on feeding me food that I didn’t want, or sat me in front of the TV when a show that I hated was on, or didn't realize that I was crying because I had a toothache, not because I was sad and needed a hug.

Just imagine a scenario where you have a strong preference about what happens, and imagine the frustration on not being able to communicate if someone *gets it wrong*. Over and over. Of course, they can’t help it that they can’t understand the ways that you try to communicate your preference, so it’s not their fault

But it’s your fault, either. Did you ask not to be able to talk?


(Just for the record...working with people with the sorts of profound intellectual disabilities that I talking about can be very difficult. In my attempt to illustrate a point, I don't mean to imply that the people that provide sensitive, compassionate care at home and in group home, hospital, and school settings don't do a good job, because there are certainly many, many people out there who take that job very seriously are excellent at it. I did a personal care placement in a group home; I know it's not the area of support in which I'm strongest, even when I was working without disabilities. It takes a special person to do that important work, and thank God there are people that love doing it.)

Giving People with Intellectual Disabilities Control by Watching for the Ways in Which They Communicate

I worked one summer at a camp for adults with intellectual disabilities. One week, I worked with Gertie, a woman in her 70’s. I liked her. She was in good shape for her age, she was tough, and despite a speech impairment, she let it be known what she wanted (which was mainly a cup of tea after every meal and an afternoon nap.)

But her programming notes indicated that in order to have her cup of tea at a meal, she had to have at least two glasses of milk, juice or water at the meal, to be sure that she stayed hydrated. She didn’t like that, and drank very grudgingly. During lunch on our third day together, when she was working on her second cup of juice, I started to notice the glares she was giving me. They got meaner and meaner.

“Uh…anyone want to switch it up this afternoon?” I asked. “I’m kind of getting a vibe that Gertie has had enough of me. Is that it, Gertie?  Are you sick of me?”

“Tea,” said Gertie.

Thankfully, another counselor was willing to spend the afternoon with Gertie if I went to Swimming with her group. By supper time, Gertie had stopped glaring at me. But if I’d been her, three days of some youngster not letting me drink my tea until I’d forced down two glasses of sicky-sweet juice would have left me glaring too.

Another man that I worked with for just one day that summer arrived with a notation in his file that said that although he didn’t communicate verbally, we would know that he was anxious because he would grind his teeth.

“How am I going to know if he’s grinding his teeth?” I thought as we unpacked his bag together.

I found out soon enough, when he started grinding them so violently that I could hear him on the other side of the cabin. This continued the entire afternoon.

I went to my supervisor after dinner and said, “I’m not taking my evening off tonight. I’m the one who’s been with him all day, and I’m not comfortable tossing a new person at him until he’s feeling okay enough that the teeth grinding stops.”  (It didn’t occur to me that maybe I was the one making him anxious, but it didn’t matter anyway. My mother took a turn for the worst that night, and I had to leave camp quickly to go to Toronto).

The Point

People with profound intellectual disabilities especially don’t have a lot of control over what happens to them. Service providers check themselves more and more these days, to be sure that they’re giving people they support as much choice as possible (not that we should have the power to "give" or "take" something that is rightfully theirs, but I hope you know what I mean.)   When someone is highly dependent on others for care, particularly when they can’t communicate, keeping that high level of personal agency present in care is difficult.  But it's *vitally* necessary.

Because it’s got to be terrible not to be able to make your wishes known verbally. We’ve got to be very observant when we work with people with intellectual disabilities who can’t communicate verbally, to pick up on any signals that may consistently indicate a state of mind or a desire. It’s the least we can do, really.

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