Telling your story without being a self-narrating zoo exhibit

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.

“Well, he throws chairs at people!”

 
 
Thing about “last resort”- people will often make brutal things to do look connected to things they are not connected to. “You pinned him to the floor?” “Well, he throws chairs at people!” failing to mention that the pinning to the floor was actually because he threw a pencil. Even if it is factually true that the kid sometimes throws chairs at people.
 
realsocialskills said: 
 
Yes, absolutely.
 
Another thing that can happen is that someone will be described as “he throws chairs at people!” even if he did that one time five years ago.
 
Or if another teacher *told* them that he threw chairs at people, and they don’t ask for details. And maybe what actually happened is that he picked up a chair one time, and they decided that meant he was going to throw it. Or he habitually throws chairs, but never actually at people.

“As a last resort”

Content warning: This is a graphic post about brutality towards people with disabilities. ABA and justifications for abuse are discussed. Proceed with caution.

People do a lot of brutal things to people with disabilities, including children.

Some examples: pinning them to the floor, punishing them with electric shocks, medicating them into immobility, putting them in 10-40 hours a week of repetitive behavioral therapy, taking away everything they care about and making them earn it by complying with therapy, taking away their food, and confining them in small places.

These things are now somewhat politically unpopular. We identify, as a culture, as having got past that point. We think of this kind of brutality as something that happened in the past, even though it is still common.

What this means in practice is that whenever people do brutal things to someone with a disability, it will be called the last resort. People doing the brutal things will claim that they minimize them, that there are protections in place, and that they only do them when necessary.

For example, this is an excerpt from the (as of this post) current ethical standards for BCBAs (certified ABA experts):

“4.05 Reinforcement/Punishment.

The behavior analyst recommends reinforcement rather than punishment whenever possible. If punishment procedures are necessary, the behavior analyst always includes reinforcement procedures for alternative behavior in the program.

4.06 Avoiding Harmful Reinforcers. RBT

The behavior analyst minimizes the use of items as potential reinforcers that maybe harmful to the long-term health of the client or participant (e.g., cigarettes, sugar or fat-laden food), or that may require undesirably marked deprivation procedures as motivating operations.”

In other words, the current standards of ethics for ABA practices explicitly allow punishment, harmful reinforcers, and “undesirably marked deprivation procedures”. But, they claim to “minimize” it, and only do it when they consider it necessary in some way.

This is an empty claim. Everyone who has ever used harmful reinforcers and brutal punishments has claimed that they are only used when they are necessary. Even the people who deprived children of food and made them live and study on electrified floors (graphic link, proceed with caution.) Even the electric shocks and food deprivation used by the Judge Rotenburg Center do not violate the BCBA ethical guidelines, because they claim that they are necessary and only used in extreme cases (even though they shock people for things like standing up from chairs without permission.) 

Whenever any of this is done to someone, it will be justified as “a last resort”. Even if it’s an explicit part of their plan. Even if it’s done regularly with no attempt to transition to another approach. Even if nothing else has ever been tried. Someone who is treated brutally will be assumed to have deserved it.

People call things last resorts to justify doing them. They choose to do brutal things to a vulnerable person, but they think of it as inevitable because it is “the last resort”. Calling something “the last resort” means “it’s that person’s fault I’m doing this; I could not possibly do otherwise.”

Treating someone in your care brutally and then blaming them for your choices is inexcusable. 

To those treated brutally and told it was a last resort: I’m sorry that happened to you. I’m even more sorry if it’s still happening. It’s not your fault. It’s not because of anything you did, and it’s not because there’s anything wrong with your mind. You were abused because others chose to abuse you.