In certain contexts, just about everything a disabled person does will result in someone following them around with a clipboard, taking notes on their behavior, and designing a behavior plan for them.
This is often called ‘listening to what the behavior is communicating’ or ‘keeping in mind that behavior is communication.’
I know that nothing I’ve ever done was intended to communicate ‘please put me on a behavior plan’. If anyone asked me, they would know with certainty that I don’t want them to do anything of the sort.
I’m not alone in this. Very few people would willingly consent to intense data collection of the kind involved in behavior analysis. Far fewer people would willingly consent to the ways in which that data is used to control their behavior.
A lot of people never get asked. People do these things to them that very few people would willingly consent to — without asking, and without considering consent to be a relevant consideration.
Somehow, an approach that involves ignoring what someone might be thinking gets called ‘listening to what is being communicated’.
That is neither ethical nor logical. Behaviors don’t communicate; people do. If you want to understand what someone is thinking, you have to listen to them in a way that goes beyond what any behavior plan can do.
Collecting data is not the same as listening, modifying behavior is not the same as understanding what someone is thinking, and disabled people are fully human.
Being a disability expert of some kind doesn’t give you the right to violate boundaries. People with disabilities are people. Being an expert of some kind doesn’t mean you have a relationship to them. It doesn’t mean you have any authority over them, either.
Being a parent of a disabled kid isn’t permission to take on a parental role with every disabled person you encounter.
Being a nurse doesn’t make it ok to ask people with disabilities invasive medical questions.
Being disabled doesn’t make it ok to tell other disabled people how to live their lives.
Being a special educator doesn’t give you the right to tell disabled people how their minds work. Or what they can and can’t do. Or to force them to make eye contact.
Being a therapist doesn’t make it ok to take on a therapeutic role with every disabled person you encounter. Treatment requires consent; being a therapist doesn’t make you an authority on anyone else’s life.
Being a researcher doesn’t give you the right to tell people with disabilities what they can or can’t do, or how they should live their lives.
Being disability staff doesn’t mean that random disabled people you encounter in public places need your help, or that you know how to help them, or that you have the right to tell them what to do (actually, that applies even when you *are* someone’s staff).
People with disabilities have the same rights to privacy and autonomy as anyone else. No matter what kind of expertise you have or think you have.
In social services culture, “challenging behavior” is used as though it’s a technical term, defined as something like:
“culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities”.
This is expressed in a way that sounds like a technical definition, but it isn’t really. It’s a value judgement.
If you take the definition of “challenging behavior” seriously, all of these things literally fall into it:
- Participating in the Greensboro sit-in or the Montgomery Bus Boycott
- Leaving an abuser when your culture considers it inappropriate to do so and is likely to respond with violence
- Living in a homophobic culture that actively discriminates against gay people, and having a same-gender partner anyway
Defying cultural norms is usually dangerous. It’s not always wrong. Deciding whether an act of defiance is good or bad isn’t a technical question; it’s a value judgement. “Challenging behavior” isn’t an objective clinical term. It means that you’re judging that particular behavior is wrong and that you have a right to modify it.
I don’t think value judgements are wrong. I think they’re necessary and important. I also think it’s important to be honest about them. It’s easier to think clearly about the value judgements you’re making when you’re willing to admit that you’re making them.
Short version: “Challenging behavior” is used as though it’s a technical term. It isn’t. It’s a value judgement, and I think it’s important to be honest about that.
If developing a skill, even shakily, means someone will lose their accommodations, that makes it impossible for someone to use that skill. That’s a problem.
For instance, people who can walk often still need wheelchairs. Denying wheelchairs (or wheelchair accessible transportation, or other accessible things) to people who can walk doesn’t make a wheelchair any less necessary. It just prevents people who can walk a little from ever doing so in public. (And prevents some people from developing that ability at all.)
Similarly, a lot of AAC users can talk, or can talk some of the time. For many people, the best form of communication is a mixture of speech and a communication device. Often, when people speak, they are treated as though they are faking their need for AAC. Or that they’d be able to use speech as their sole means of communication if they tried harder. That doesn’t make AAC any less necessary. It doesn’t make speech any more possible. All it does is make it impossible for someone to use both speech and AAC, which deprives them of communication options they’d otherwise benefit from.
Similarly, a lot of people who can read visually also need screen readers from time to time. If seeing someone read standard print means that you won’t let them use electronic formats anymore, that doesn’t give them new abilities. All it does is stop them from reading.
Wheelchair users have the right to do what they want with their legs and AAC users have the right to do what they want with their voices. People have the right to read in a combination of ways that are possible for them. There are numerous other examples. Those rights matter, and they’re often ignored.
Short version: People with disabilities who use equipment or adaptive strategies are often prevented from doing things in the standard ways too. They’re expected to either do things in the approved disabled way or the approved normal way. This is wrong. People should be able to do things in the way that works best for them. (Which is often a mixture of different ways, some of which are used by nondisabled people as well.)