Friday, November 20, 2009


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 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.


Blogger Adelaide Dupont said...

So true. Now we are more aware of youth rights and youth empowerment, but that is a big form of discrimination, and one we all can relate to because we were all once young.

It's the same with disability discrimination. Almost anyone can and often does become disabled. Yet there are so many splits in movements.

Loved the references to Nu-Shu and also Rosa Parks. Must find out more about this women's only writing system. The closest to it I learnt about was 'anomalous female teenage handwriting' in Japan. That was handwriting, not script, it was made to be rounder and cuter.

I can imagine lots of oppressed groups making their own writing systems.

And quite recently I said: "Would you want Rosa Parks to melt?" My big resistance model is probably Sabine Dardenne, one of the survivors of Marc Doutroux's abuses of children. I love the way she went about her own personal therapy and empowerment, and her strong sense of resistance.

6:21 PM  
Anonymous Anonymous said...

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12:20 AM  
Blogger Muser Grace said...

This is really great advice on parenting in general, I think. My child does not have autism, but your advice is still applicable. Great stuff. Thanks.

9:34 PM  
Blogger Adelaide Dupont said...

Muser/Beautiful Mama:

I know your SparkleEyes won't obey straight away like the children Ettina talks about are forced to do. Your post on Love and Logic was great, and how she subverted it.

And it's also good how you're appreciating your daughter's right and need to have and be in her own world.

6:36 PM  
Blogger tia said...

i don't even know you, but this makes me love you! :]

11:36 AM  
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7:16 AM  
Blogger xine said...

This post is very inspiring... I worked at a clinic that provides ABA therapy for two years and so much of what you wrote about is true, these kids are in no way taught to protect themselves, just blindly obey, and their families are expected to go along with it.

Do you know about any autism self-advocacy organizations?

9:35 AM  
Blogger Adelaide Dupont said...


There are several in the US, Canada, England (and the rest of the UK), Ireland and Australia and New Zealand. (And, yes, there is one in South Africa, to my knowledge).

This is just the Anglosphere. One of the highlights of 2009 was when many WrongPlaneteers met in Avignon, France.

The big association you'll probably hear about is The Autistic Self-Advocacy Network (they have arms in the UK and Australia) and the other is Autism Network International.

There are places where you can retreat like Autreat and Autscape, both the US and Europe respectively.

Good to meet you and Kiddo (and awesome to read about the autistic adult).

Many are tied to general disability organisations.

6:45 PM  
Blogger Kaminiwa said...

It's a minor peeve, but I think you meant "child molester", not pedophile, in this post. Pedophiles are merely attracted, molesters are the dangerous ones, as they actually act on it.

5:08 PM  
Blogger Adelaide Dupont said...

Merci, Mantic.

Molester was the only word I knew for these people up until I was a teenager. I do have pictures in my head of what they do, like grab at your genitals.

Paedophiles, literally, love children.

And a neutral word is probably child sex offender. At least for the ones who have been caught at it.

8:08 PM  
Anonymous Anonymous said...

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10:00 PM  
Blogger Ettina said...

Well, yeah, I meant child sexual abuser. After all, not all of those guys are sexually attracted to kids, for some it's more about the power, or whatever. If you read the psychological literature, there are piles of subtypes.
I wouldn't trust someone who's sexually attracted to children to spend time with kids, though. It seems to be that pedophiles not only find kids sexually attractive, but don't seem to understand how kids differ from adults. And plenty of things kids do, if an adult did that, could be considered flirtacious.

1:52 PM  
Blogger Corina Becker said...

this is an awesome post. I've posted about Self-Advocacy, and why it's important, but you have so many good points too.

I especially love this line "a self-advocate isn't someone who has managed to avoid suffering, but someone who has survived and fought back."


Autism Women's Network

5:29 PM  
Blogger Corina Becker said...

this is an awesome post. I've posted about Self-Advocacy, and why it's important, but you have so many good points too.

I especially love this line "a self-advocate isn't someone who has managed to avoid suffering, but someone who has survived and fought back."


Autism Women's Network

5:29 PM  
Blogger Sarah said...

Self-advocacy is one thing that I have learned a little about that has made a world of difference to me in all aspects of my life. I am going to give a graphic example, so if anyone reading this doesn't want to hear something that is a little graphic, don't read on. I spent about 10 years in a marriage during which time I literally could not say "no" to sex. I didn't know saying "no" was an option. Through therapy I learned that I could say "no" yet I suffered extreme guilt and anxiety every time I did. My husband, who never realized what I was going through, was open to hearing about my plight. For a few years we stopped most sexual activity. Now, I am the one who has control over what happens to my body. We have remained married for over 20 years, and I'm thankful I learned to be an advocate for myself in this instance.

6:54 AM  

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