Self-Advocacy

This post is at least partially a response to a blog entry by David Hingsburger, about a developmentally disabled guy named Duncan who was physically attacked by some people because of prejudice, and who reported it to the police, and his attackers went to jail. It's a tragedy that he was attacked, but a success that justice was done.
And it got me on a tangent about self-advocacy, and why that can be so hard for many developmentally disabled people. Why aren't more people who go through things like what Duncan went through doing what Duncan did? Why do so many people just deal with it and not fight back? (This post, I just realized, was also inspired by hearing in my women and gender studies class about Nu Shu, a female-only language and writing system in China. The Nu Shu women put up with so much, and their only rebellion was in secret communications to each other. Why?)
Of course, firstly, disability can have a direct impact. I know a boy whose only communicative speech is 'yes' or 'no'. So unless someone asked him, twenty-questions style, if he was the victim of something like this, he wouldn't be able to report it. And even if you did, would he have the receptive language necessary to understand your questions?
Then there's how reports by disabled people can be discounted and ignored, especially if their communication is atypical. That's one part that I found frustratingly accurate and well-demonstrated in the movie I Am Sam, where the people always seemed to assume that Sam's talk about the Beatles was nonsense even though he was clearly communicating through analogy. Even when someone gets the message across, it's often ignored if they didn't communicate it the right way.
But I think there's something more. It seems to me that many developmentally disabled people learn not to speak out for themselves. For example, my mother is a champion complainer. If she thinks that some business has treated her wrongly, she'll write a letter of complaint, or phone them up, and it's impressive to hear her rant. And she can often get an apology that way. But when I try to complain, and they start to explain how 'that's just the way they run things' or whatever, I get confused. I think: 'Maybe that's actually how it works, and everyone else just knows this and I don't. Maybe I'm misunderstanding the situation because I'm autistic.' And I'll often give in. It's only with disability issues that I don't tend to give in, because I know the system needs to be accessible to autistic people, and even if I don't get what I want in time to help me, it'll be a help to the next autistic who comes through.
And I think it would be even worse if I'd been diagnosed earlier, and had more typical 'autism parents'. I see the kids in the volunteering programs I work in, and how casually the workers override their interests, and they often don't complain, and when they do, it makes no difference. I see ABA programs training autistic kids, and while the kids may be learning to identify colors and put their clothes on and all that, what they're learning above all is to automatically obey what a nondisabled adult tells them to do. Imagine if a pedophile got at one of these ABA kids, they're already groomed to be easily abuseable! (And no doubt many pedophiles have gotten at these kids, given how high the rate of abuse of disabled people is said to be.)
Someone asked me recently if I write stuff on my blog to help parents of kids like me, so I'll go now into how parents can help their kids self-advocate. Well, firstly, advocate for your child, like my parents did. Don't accept something inferior, when you know your child needs X and the system has a duty to provide it. Even if you don't get it, your child will see you fighting on their behalf, and learn that their rights are worth fighting for.
Next, listen to your child. Even severely disabled kids can tell you exactly what they want and need. As much as possible, respect your child's wishes, and if doing so isn't practical or would infringe on other people's rights, explain this to them while acknowledging that they want it, and see if you can find a compromise. Some kids are actually very assertive already, and if your child's like this, don't see it as a problem! Sure, they're harder to look after, they can be really annoying, but remember that this trait can be a great strength. I've often gotten complaints on AllExperts.com from parents of kids who get into logical debates whenever you tell them to do something, and I always give them the same advice: explain to the child exactly why following that rule is important. If you can't explain that to them, then toss it out as unneccessary. That way, you're encouraging the child to think 'If I don't think something's right, I don't have to do it', which is exactly what people like Rosa Parks did.
Thirdly, learn about discrimination, and teach your child about it. Disability discrimination is the most applicable, but if you're more experienced with some other discrimination, teaching your child about that will make them better able to recognize disability discrimination as well. My parents knew absolutely nothing about disability discrimination, but my mother's an active feminist and anti-racist, and my father supports her in her activism. Of course, being the daughter of a feminist, I learnt a lot about discrimination early on. My Dad told me that when I was told that children weren't allowed at my mother's convocation ceremony, I said: "That's discrimination!" We didn't fight it, but my father affirmed my statement. Make sure that your child knows when they've been treated unfairly, even when it's not practical to fight back. For example, if you know your child will be bullied for doing a particular behavior, rather than just telling them not to do it, tell them that kids are likely to bully them, and it's not right to bully someone for that, but they have the choice of either toughing it out or stopping that behavior. And listen when your kid communicates that a particular injustice is a big enough deal to fight back, too. They need to learn to pick their battles, and that means picking which ones are worth fighting as well as which ones aren't.
Lastly, make sure that showing your love for your child is a high priority, higher than your embarrassment when they do something weird in public, or your fear that they won't be able to hold down a job in adulthood, or your frustration when they have yet another meltdown. All those problems are manageable, and won't stop your child from being happy. But even if you love your child deeply, if they don't know that you do, that can ruin their entire life. My parents were both abused as children, and even in their late 40s, I can see the suffering from that. It's a whole lot harder to heal those wounds once they've been made than to prevent them in the first place.
And remember: a self-advocate isn't someone who has managed to avoid suffering, but someone who has survived and fought back. If something terrible does happen to your child, help them to find their strength to fight for themselves. When my parents learnt that my cousins had sexually abused me, they took what actions they needed to protect me and teach me that I did not have to put up with that sort of thing! Which means that a) if something like that ever happens again, I will protect myself and I will seek justice, and b) I can defend others and try to prevent them from suffering like I have.