A reader asked:
…For the not teaching disabled children that their bodies are “wrong,” what are ways to avoid that? The article described why it is bad, but what are things people can say or do when in therapy or school settings, the goal is to change or level up their abilities in some way?
I think there are several things that help.
First and foremost, you have to act as though they already have value. Part of what that means is helping them to do things they care about, and not making those things into therapy. If everything someone cares about inevitably becomes therapy, it’s hard to keep caring about things. And it undermines their ability to understand they they already have value, even without being cured. Actions speak louder than words.
- If a kid likes trains, let them do train-related things for its own sake. Don’t make everything train-related into therapy.
- Don’t make everything train-related into an incentive for complying with therapy, either.
- And buy them train related things without requiring them to earn them with a therapy sticker chart
- Let trains be trains, sometimes. And make sure the kid can count on being able to do thing they care about.
- Kids need to have interests and to pursue them.
- If therapy always takes priority, that’s a problem. That sends the message that therapy, and becoming more normal, is more important than anything else.
Involve them in decisions about therapy
- Parents have to make certain decisions for their minor children, especially when they are very young
- But they don’t have to make all of the decisions
- And even when they do have to make the decisions, they can and should listen to what their kids think
- If the child understands what the therapy is for, and says they don’t think it’s worth it, consider the possibility that they are right.
- And if you decide they are wrong and that you’re going to make them do it anyway, tell them why
- And if a kid dislikes a particular therapist, assume there’s a good reason unless you have strong evidence otherwise. (Particularly if they don’t object to the therapy and are fine with other therapists)
- And the older a kid is, the less appropriate it is to force them into therapy
- Kids with disabilities need to grow up and learn to make their own decisions just like kids without disabilities do
- Completely controlling their care is not conducive to their learning how to make decisions about it
Be particularly careful about surgery and painful therapy
- If you’re making a kid do something painful, make damn sure you have a good reason
- This goes double if the kid objects to the therapy
- Because being overpowered and subjected to pain at the hands of large adults is traumatic
- Sometimes it’s necessary, but it imposes a heavy price. Don’t ignore the price.
- Don’t do it without a good reason
- And, the older the kid is, the better the reason needs to be.
- Teaching a teenager that they have no right to control what happens to their body is *really* dangerous.
Distinguish between leveling up abilities and normalization
- This is hard to explain. I’m going to write more posts about it at some point
Don’t do long-term 40 hour a week therapy programs.
- Kids need time to do things other than therapy
- They also need space to explore and do things on their own initiative
- They can’t do that if almost all of their time is spent doing therapy
- And it’s ok if that means sometimes they watch the same YouTube video over and over for an hour
- Or spin toys
- Or sit on the floor not exercising
Make sure they know adults with disabilities
- It’s hard to believe that you’re going to grow up if you never meet any adults like you
- Adults with similar disabilities know things that you don’t
- Even if you have similar disabilities, make sure your kids know other adults with disabilities
- Kids need role models and clueful adults other than their own parents
- (I’m not sure how this works for kids who aren’t likely to survive childhood. I think it’s probably still helpful, though.)
Make sure they know other kids with disabilities
- Having a peer group is important
- Growing up without one is really isolating
- That said – don’t assume that kids will be friends just because they have similar impairments
- Not all kids like each other, and that’s ok
- Trying to force kids to be friends isn’t helpful
Talk about it explicitly
- Kids need to know why they have therapy. And what it’s for. And what’s different about their bodies.
- Kids who are disabled enough to need therapy know damn well they’re different
- They don’t necessarily know that it’s not their fault, though
- Or have any good language to think about it
- People with disabilities are almost completely unrepresented in the media, and what little media we have is almost always dangerously inaccurate
- This is confusing and disorienting, and kids look for the closest available concepts to make sense of things
- For instance: Almost all kids know that bad kids get punished by being made to do things that are painful and unpleasant.
- If a kid is regularly made to do things that are painful and unpleasant that other kids don’t have to do, and no one explains why, it’s really easy for them to end up thinking they’re being punished for being bad.
- And they can end up thinking they’re being punished for being bad for failing to do things they’re incapable of doing
- This can happen even if no one ever says this to them; but most kids with disabilities get told this more or less explicitly at some point
- (Eg: by religious people who tell kids that if they prayed hard enough they’d be cured; by teachers who tell them if they just tried hard enough they could do what the other kids do)
- So talk about it
- Even if you’re not sure they have receptive language