3:37am May 26, 2013

Don’t teach kids that their body is wrong

realsocialskills:

Something that can happen in therapy for disabled kids is:

People hold out hope that the kid won’t be disabled anymore, when they grow up.

So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.

This doesn’t work.

People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.

Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.

And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it.

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involved therapy - but always, it involves reality. You can’t willpower yourself into being someone else.

Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.

Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.

If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.

This, making me “use my words” and speak perfectly - and the general idea that speech>everything else has made me more silenced/uncommunicative. Because using writing, sign language, pictures, sounds has meant getting through shame and fear. And getting through all that has meant not communicating when what I had to say was important.

And only being able to connect when I’m on the other side of that veil of fear.

Absolutely this. Most of my suicide attempts had to do with the fact I KNEW I was never going to be cured, and didn’t even understand what I had, in the first place. And nobody gave me even a fraction of a clue, that people like me could exist in adulthood outside of institutions and not be cured in the least bit. Let alone that it was okay to have a condition with no name. Or that some of my conditions had names. Or that progressive conditions didn’t mean you’d disappear. Nobody taught me any of that. So I assumed the worst.

One thing I tell people over and over again. Don’t promote a cure as the only hope. Because the kid will know they can’t be cured. And when they know your version of hope is based on totally fake ideas (like that it’s possible to cure them, or possible that they will learn something they know they can never learn), then as like as not they will become hopeless. And that’s where suicidal thoughts are born.

You have to make sure the kid knows that it’s possible to live a good life AS THEMSELVES. Meaning as who they are now, not as who they could be if everything went according to your plan that probably won’t work in the first place. That they don’t have to live in an institution, or with you. That there are other options.

If you can’t find other options, make them. Yes it’s hard work. But I wouldn’t be living in my apartment if thousands of disabled people and our parents and caregivers hadn’t fought really hard to create services that were alternatives to institutions, and fought for ways to fund them. Such fights can be won, and rolling over and giving up isn’t in anyone’s best interests. Yes, there are people who would rather be taken care of by family, but there are also people who can’t, or don’t want to, and you can’t assume that your child will want to stay with you forever. My own family, with lots of disabled people, has a long tradition of relatives taking care of each other, but it’s still important to have those other options. Because family could die, or have a falling out, or become too disabled themselves to take care of someone else. And then what. You don’t want to plan to live forever, and you don’t want your kid dumped in a nursing home, group home, or other institution went you die. There are other options, regardless of how severely disabled someone is. (No, I’m serious. It’s true. There’s nothing that can be done in an institution that can’t be done outside of one. Just because our society likes to build institutions for disabled people doesn’t mean it’s the only way or the best way. There’s a reason institutions of all kinds have high mortality rates and it’s not because that’s where all the experts in taking care of us go.)

For instance, I used to know a guy who couldn’t use more than seven words in sign language, couldn’t see, couldn’t walk, needed fairly intensive nursing care, had “severe behavioral issues”, and owned his own house and lived there with roommates. He’d been thrown out of a state institution because he cost them too much money destroying their clothing and blankets by ripping it up – something he did because he was in untreated pain from a leg that had been dislocated for years without any treatment. People always point to people like him and say they can’t possibly live outside institutions, but that’s just propaganda for institutions, it’s not true. I’m also a good example of someone who needs kinds of care that are traditionally thought of as institutions only, but I live in my own home with support. It doesn’t take any kind of skill to live on your own, it just takes having the right supports in place, including roommates if necessary.

So don’t assume your kid could never do it, that’s a soul-killing thing to tell them if that’s what they want to do with their lives. Especially if they don’t want to live with you forever and see institutions as the only alternative. Be sure your kid actually sees and knows adults with severe disabilities of all kinds living on our own. Not just in institutions. Because kids aren’t stupid and they will figure out that people like them are all in institutions and it will make them lose hope that they could live any kind of pleasant future at all. I’d figured it out by the time I was twelve or thirteen. By the time I was fifteen, I’d worked out I’d never be cured. That put me ahead of virtually everyone else in my life.

And if you want to know the messed up things that happen when you’re a disabled kid who is told constantly that you could (insert skill here) if you tried hard enough, read _The Me in the Mirror_ by Connie Panzarino. She could never walk a single step in her whole life. Yet she’d been told since infancy that she just wasn’t trying. So she believed that secretly she could walk and one day would, and that she was just holding out on people because she didn’t want to. She was fifteen before she figured out it wasn’t true. I’m still working my way out of mental tangles of that sort, and I’m in my thirties. Don’t create such tangles, and don’t let anyone working with your kid create them either. It’s as important to know your limits as it is to know your strengths. I’ve nearly killed myself, and done serious damage to my body, pushing myself past limits I didn’t know (or couldn’t believe) I had.

People are always talking about the dangers of limiting disabled people too much, but it’s just as dangerous to teach us we have no limits. That means saying no to all the “inspirational” BS that says that every limit can be overcome, and that limits exist only if you believe in them. They say post-polio syndrome is the most severe in people who tried the hardest to push past their polio when they were younger. Many autistic people suspect that the movement disorder I have (“autistic catatonia”) works in similar ways. Believing you have no limits has serious health consequences. It’s especially dangerous for people who have problems with physical or cognitive stamina, because for us, learning to pace ourselves is critical to avoiding dangerous situations. If I go past a certain point my muscles go so limp that I have trouble breathing. You don’t want to mess with that. And that’s to say nothing of shutdown, pain, and exhaustion.

So… All of these things are critical to teach any disabled child. Not just by using words, but by example and by showing them people and situations that back you up. It didn’t matter what words anyone said to me, without actually seeing disabled adults who weren’t employed, couldn’t take care of themselves, and still lived on their own, I believed my future to be completely bleak and hopeless. Once I started meeting such people, my life completely turned around and I had something to live for again. I moved out on my own, got services to take care of me, and haven’t looked back. I would be devastated if someone forced me to live in a nursing home, and I would not do well living with family. (That was especially crucial when my family still lived in the house I grew up in, which was associated with too many bad memories for me to ever feel comfortable living there or even seeing it from the outside again. I can barely even look at pictures of it, and when I thought I’d have to live there forever I was desperately unhappy.)

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