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Telling your story without being a self-narrating zoo exhibit

Real Social Skills
When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.
Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you.
Often, what they really want is for you to be a self-narrating zoo exhibit, and satisfy their curiosity without inserting your opinions or having boundaries.
Maybe they want to hear from institution residents who don’t want to leave, so they can decide that institutions really are the best place for people with disabilities. Maybe they want to hear a story that allows them to feel pity for you and bask in their lack of disability. Or any number of other things.
These are ways people use their versions of our stories to take away our power; we can use our real stories to get our power back.
Telling your story doesn’t have to mean telling creepy people what they want to hear. It can mean telling the truth, even when others want to lie.
Telling your story can mean bearing witness. It can mean saying “No, it doesn’t work that way. I was there. I saw.” It can mean saying “I’ve seen people do these things that you say we can never do.” Or “I’ve been there. It was wrong. And it’s also wrong when people do it to you.”
It can mean saying: “I remember watching someone die because others decided to withhold medical treatment, food, and water. I wish I’d been able to save him.”
Or: “Don’t think that my life is pitiable or inspiring. I do meaningful things. We all do. And do you know how amazing it is when the light hits a rock just the right way?”
We don’t have to tell the stories they want us to tell. We can tell the truth. And there is power in the truth, and there is power in the truth backed up by stories about things you have witnessed or been part of personally.
It takes practice to learn to tell the truth in the face of pressure to be an inspiring self-narrating zoo exhibit. It can be terrifying. It can also be very, very hard to resist prompts to say the things other people clearly want you to say.
It takes practice, and in practicing you will probably not entirely succeed right away. Even with practice, you might still inadvertently tell the story others want you to tell rather than the story you believe some of the time. That’s ok. None of us are perfect, and it gets easier over time.
Short version: Sometimes when people say “tell us your story”, what they really mean is “tell us what we want to hear.” But telling your real story can be a powerful way to tell the truth.

Document communication

Real Social Skills

This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

Some specific things you can look for:

  • Do they turn their head when you come in?
  • Flap their hands when they’re angry or happy?
  • Vocalize?
  • Say words that may or may not be communicative? 
  • Try to get out of their chair?
  • Sing?
  • Become more calm or agitated when you speak to them?
  • Make eye contact?
  • Say numbers?
  • (There are any number of other things)

Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.