for professionals – Real Social Skills

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions.

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are.

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of. We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals – please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Content note: This post is written with parents and professionals in mind. It’s about a common way that rewards-based behavior modification hurts people, and the importance of being aware of that effect in work with people who might be ABA survivors.

I’ve seen a lot of well-meaning people who are trying to fix special education and adult disability services say things like “you have to find out what they’re interested in and incorporate it.”

This can be good advice. It’s also important to realize that this is loaded, and that not all disabled people are going to be willing or able to show you what they’re interested in.

For people with disabilities, “what do you like?” can be a deeply intimate personal question. It can be very dangerous to let people know what you are interested in.

Autistic people (and others with intellectual and developmental disabilities) are often subjected to intense behavior modification. This is often aimed at silencing them, getting them to pretend to be non-autistic, or otherwise change in ways that deny fundamental things about who they are.

You have to take some pretty extreme methods to get someone to comply with that kind of behavior program. One traditional way is to use painful punishment like starvation and electric shock. These days, that’s considered distasteful, and most therapists prefer to use positive methods.

In practice, what that often means is that anything a disabled person expresses interest in will be taken away and used as a reinforcer for a behavior plan. The more they care about something, the more their access to it will be contingent with compliance with what powerful people in their life want.

Even if the thing they care about is something like math. Or books. Or access to fresh air. Or their teddy bear.

People subjected to this kind of thing learn quickly that when they express interest in something, it will probably be taken away.

And beyond that, they learn that when people know what you care about, they will use it to manipulate you into doing awful things to yourself. In many cases, this includes being manipulated into maintaining a grateful affect and praising the therapist.

When people have experienced this type of violation, sharing their interests with anyone is a big risk. Particularly if that person has power over them. Particularly if that person is a member of a professional culture that largely approves of what was done to them. (And if you’re a teacher, therapist, direct support professional, or similar, you have power over them and your professional culture approves of misusing it.)

It’s important to keep in mind that people you work with have every reason to believe that it is dangerous to tell you what they care about. They don’t know what you will do with that information, and have every reason to believe that you will use it against them. (Or that information they give you will get back to people who will do so.) It might take a long time before some people are willing to share their interests. Some people may never trust you. The way you teach and offer support needs to take this into account.

Short version: It’s important to be aware of the loaded nature of asking disabled people to express interest in things. It’s important to make space to incorporate interests; it’s also important to allow people to keep their interests private.