Wednesday, May 18, 2016

Whose Story Is It??

He was excited to tell me his story and that excitement made it difficult for him to get the words out. His mind was thirty words ahead of his mouth and that resulted in words spilling out of him like too much milk in a glass. I enjoy this. I enjoy his excitement. And I like waiting for the story to reveal itself. People think I'm patient in these situations, I'm not, I'm curious and that curiosity makes it even a bit fun to watch the story slowly reveal itself as he slows down and gets better control of how he's telling the story. The other thing, of course, I needn't say because it's obvious, the initial excitement and the confusion of words are part of the story telling experience for him. He communicates first his emotional joy at both having a story to tell and having someone to listen. Who can't be drawn in by that?

His staff, thinking she was supporting him, initially interrupted him to 'help' him tell his story. But what so many people without disabilities, staff, parents, siblings, don't understand is that they can't tell his story. They can tell their story, they can bring their point of view to a situation, but they can't ever tell his story. He experiences his life in a unique way, therefore his story is unique. You will notice, here, that I'm not going to try to tell his story, I'm going to tell you my story, which is the story of listening, or attempting to listen to him as he tried to tell his story through the barrier of help.

Why people who work with people with intellectual disabilities get impatient with someone who takes some time to tell a story or to communicate a need is a mystery to me. They come in knowing that many people with intellectual disabilities have to work harder to communicate thoughts, ideas, wishes, hopes, dreams and stories. So, why be impatient with someone who takes a little more time - your time is bought, let it go. Anyways, she kept jumping in to help him tell the story but the story she wanted to tell featured her as the primary player in the event. Yes, she had a role, but his story isn't her story. Her story is her story. Both stories are valid but they aren't the same.

An example, a direct support professional and a person with an intellectual disability walk into a mall to do some shopping. They may be side by each throughout the whole trip but the experience the staff will have will be completely different than the experience that the person with the disability will have. Staff, in the role of valued, non-disabled person, helping less valued disabled person will experience a reception very different than the person they support. They may see their welcome and presume that that welcome extends to the person with a disability - and that's often not true. They  may not be able to see the various unkindnesses experienced by the people they are with because they are experiencing the 'angel of mercy effect' ... where people see them as extraordinary for being with someone, um, like that. Different people, different experiences, different stories.

I finally asked the fellow for permission to speak to his staff. She was a little shocked at the idea that he had permission giving power, but smiled benignly, a skill we all learn within weeks of employ. I said to her, "He really needs your help to get this story out. He needs your silence. Every time you interrupt to help, he has to clarify what he was saying as different from what you are saying. It's his story, let him tell it."

She was annoyed, "I'm only trying to help."

I imagine that's true. That she was only trying to help. But she was also making two assumptions, first that she has the capacity to help him tell his story, which she doesn't and that her take on the story trumps his take on the story, which it doesn't. I don't know her, I know him, and not wanting to appear rude, I care way more about his story because I know him, have a friendship with him and, at the same time, I don't know her and may never see her again.

People with disabilities have stories to tell.

Non-disabled people have stories to tell.

Even if they are about the same place, doing the same thing, at the same time, they are different stories.

He got through his story, it was really, really, funny. She, to her credit, said, "Oh, my, gosh, I never noticed that, that IS funny."

Sadly she would not have asked to hear his story because she had already replaced his experience with hers. She may go home thinking that she understood the time she spent with him, but she'd be making a mistake.

It's time we started hearing the stories of people with disabilities, even if it takes some time to hear what's being said.

If my experience was anything to go by, it's worth the few minutes time.


Frank_V said...

Now I want to hear his story! :)

Alicia Butcher Ehrhardt said...

It seems like a simple question occasionally by support staff - "Do you need my help here?" or an ongoing relationship where the person being 'assisted' will ask for help when he needs it - should be set up at the beginning.

And be the major part of training for support staff. Their job isn't to go through life somehow opening doors for their client, but to be there when the client needs them. Really be there. Such as in not talking on their phone or doing their own thing (unless that's what the client needs).

The basic missing idea is who's in charge.

I think both people might be happier.

Unknown said...

my words....
same with folks with dementia. clairesmum

Mary Nau said...

I liked your story quite a lot.

Belinda Burston said...

Oh my, this is so true in all kinds of situations outside of the disability realm (this is me a wife speaking :)), but how much more important to take a back seat and be invisible unless needed when you are paid support.

Maharsi Bodhi said...

In my service I use a rule of seven seconds. If seven seconds of silence passes, I'll provide assistance with leading questions. Possibly the most important thing you can convey to the people you serve is how and when to ask for help. Inturrepting someone only shows them it's a normal social cue to interrupt others.