Acceptance is the opposite of giving up

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

Restraint is violent

In what cases is it okay to restrain a kid? Is it okay to pin a kid on the floor if they try to hit you or throw something at you?
realsocialskills said:
I’m guessing that you are not a police officer or emergency responder, and that you’re asking this in the context of either parenting, childcare, or education.
In those settings, it is never ok. (Edited to add: it’s never ok in the context of mental health treatment either.) Sometimes it’s the least bad response when things go very badly wrong, but it’s never ok, and it can’t be part of someone’s plan.
I asked a friend who has more experience than I do caring for disabled children (I’m assuming the kids in this scenario are disabled because people generally assume as a matter of course that it’s not ok to treat nondisabled children this way), and she said this:
Sometimes mistakes are made and situations escalate to a point where a restraint is the least harmful option. That doesn’t mean it’s not harmful. That doesn’t mean it’s okay. When that happens, it is really important to acknowledge the harm that has transpired and to go back over the incident and events leading up to it and figure out what went wrong and how we can prevent it happening again. (quote ends here)
In the same way that, if a kid pinned another kid to the floor, you’d consider that unacceptable and plan to make sure it doesn’t happen again. It’s even more serious when an adult does that.
It is never ok to put restraint into someone’s care plan. It is never ok to see it as a solution. Restraint is a failure, not a solution.
Restraining someone is an act of physical violence. Pinning someone to the floor is a particularly invasive kind of physical violence. It’s a brutal  and physically dangerous act.
Violence against kids counts as violence. Violence against people who can’t talk counts as violence. Violence against people who are physically aggressive counts as violence.
It is never ok to restrain someone as a punishment. Or a consequence. Or to teach them a lesson. Or to prevent them from getting away with something. Or to send the message that their actions are unacceptable. Or to make them calm down. Or anything remotely like that.
If you’re coming here looking for absolution, I’m not giving it to you. If you’ve pinned someone to the floor and you’re wondering if it was ok, no, it wasn’t, and you need to figure out a way to solve the problem so that you don’t do that again. It doesn’t mean you’re a terrible person or incapable of supporting the children in your care, but it does mean there’s a problem and you need to find a better solution.
If you’re a teenager or a kid, and an adult responsible for taking care of you pinned you to the floor and you’re trying to figure out if it was ok, no, it wasn’t. I’m sorry that happened to you. It shouldn’t have. No one should do that to you. No matter what you did, that wasn’t ok. If you’re violent and you hurt other kids or adults, that’s a problem you need to work on solving, but it doesn’t mean it’s ok for adults to pin you to the floor. They should be finding better ways to help you.
For more information, check out Stop Hurting Kids: Join the campaign to end restraint and seclusion abuse in schools. In particular, this fact sheet about restraint and seclusion is a good place to start.

Listening to folks whose speech is unusual

This happens a lot, especially for autistic folks with a particular cognitive configuration:

  • An autistic person says something in the most straightforward way they can think of
  • But it’s far from the way most people say it
  • And it doesn’t occur to other people that they’re being direct
  • It’s seen as either the autistic person not understanding something, being presumptuous, or being hilarious

For instance:

  • Alice and Nancy walk into a cafeteria, which is overflowing with different food options
  • Alice (wanting a particular kind of food and not knowing how to find it): Where’s the food?
  • Nancy: Umm, everywhere?

In this example, Nancy thought Alice was just being annoying or funny and didn’t understand what she was trying to communicate. This would have been better:

  • Alice: Where’s the food?
  • Nancy: Which food do you mean?
  • Alice: Food!
  • Nancy: Are you looking for something in particular?
  • Alice: Food!
  • Nancy: Your favorite food?
  • Alice: My favorite food! Chocolate pie! Burger?
  • Nancy: They have both of those things. We will see them when we go through the line.

Or:

  • Nathan is discussing politics with his son, Arthur
  • Nathan: What does the president do?
  • Arthur: Important stuff. Not like you do.
  • Nathan: You don’t think what I do is important?!
  • (Nathan, telling the story later, uses it as an example of how kids have no filter)
  • What Arthur actually meant was along the lines of “The president is a public figure with a lot of power, and everyone pays a lot of attention to what he says; that’s really different from how other people’s jobs work”.

This would have been better:

  • Arthur: Important stuff. Not like you do.
  • Nathan: What kind of important stuff?
  • Arthur: My fellow Americans…
  • Nathan: Important like speeches?
  • Arthur: Yes. Speeches on TV.
  • Nathan: I don’t make speeches on TV.
  • Arthur: You go to the office.
  • etc etc

Short version: When autistic people communicate things, sometimes it sounds strange or unusual in ways that are often misinterpreted. Be careful about assuming that they’re being dismissive, being cute, or joking; be careful to listen. Scroll up for some concrete examples.

People with disabilities learn and think

People with disabilities are capable of learning things on purpose, because they’re interested in what they’re learning. That’s true of people with all kinds and degrees of disability. Everyone cares about things, everyone thinks, any everyone learns.

And yet, education for people with disabilities often starts from the assumption that disabled folks have no intrinsic motivation to learn. That, before you can start to teach anything, you have to identify a reinforcer for the target behavior. And that it should be the same across subjects, and that it needn’t have any relation to what you’re trying to teach.

So, instead of starting by teaching reading, you might start by identifying an effective reinforcer, and using it to reinforce reading behavior. For example, stickers. Or giving a jellybean each time someone reads a page. Or high fives. 

In a technical sense, finding a book that someone enjoys is also, according to behaviorist theory, finding an effective reinforcer for reading behavior. But it’s not at all the same as using an unrelated reinforcer to teach reading.

Finding a book that interests a person you’re teaching to read communicates why reading is worthwhile. Using an unrelated reinforcer to get them to cooperate with reading lessons may work, but it doesn’t communicate the value of reading. In fact, it actively demonstrates that you’re assuming that they will not value reading and that it’s not worth trying to convince them that reading is worthwhile. 

The same is true of communication lessons. Identifying a reinforcer and using it to reinforce speaking behavior can get someone to cooperate with rote speech lessons, but it can’t teach them what symbolic communication is. Figuring out what someone wants to say, and giving them a reliable way to say it, can. So can making sure that you listen to communication someone already has, and making it clear that you respect them. (If you refuse to learn their language, you’re teaching them that their communication doesn’t matter. Which is the opposite of helpful.) Behaviorist approaches something accomplish that, but only as a side effect. You can teach communication better if you teach it directly, rather than as a side effect of reinforcing speaking or pointing behavior. 

People with disabilities care about things, and want to learn. The assumption that we don’t is deeply degrading. 

Being allowed to do hard things

Mel Baggs added to the post on “Some things about speech“:

I used to have a really hard time convincing people that sometimes lack of speech wasn’t overload or shutdown (or as psychiatry so inaccurately put it, ~anxiety~ or ~dissociation~), but rather just being myself.

And that far from always being a result of stress, speech caused me stress and lack of speech meant I was less stressed.

I knew the autism expert I saw was no expert when I heard her tell me that if we reduced my anxiety, I wouldn’t have to rely on my keyboard so much. Later on I found out she believed meltdowns and shutdowns were not sensory at all but rather ~off task behavior~, ~manipulation~, and ~tantrums~… And I lost my last shred of respect for her.

Also, even when it *is* the result of stress, that doesn’t necessarily mean that something is *wrong*.

Sometimes it just means that life is happening. Like, when I’m doing hard things, my speech gets worse. When I’m working a lot, I look more conspicuously autistic.

This doesn’t mean I shouldn’t work or study or do hard things. It’s important for us to be allowed to do hard things, and to be allowed to be stressed and have lives. Stress is part of life.

Sometimes people try to put us in bubbles where we don’t ever do anything hard or stressful. And take any autistic sign of stress as an indication that something is wrong. And that things need to be lighter and softer and less substantive.

Those places are not good and they are not understanding or accepting. They are hell on earth.