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.

Wednesday, November 18, 2009

Disabled Student Services

OK, so I've found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it'll be really painful to write that much by hand in a short time, especially when I'm anxious. Well, since difficulty with writing can be a feature of autistic people, and I'm registered at the university as an autistic student, shouldn't I be able to use a computer to write my exam?
Not so fast! They can't just take my word for it! They need a doctor's note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn't actually know what accommodations I need, she's literally just writing down whatever I tell her, so why can't I just tell them directly?
But anyway, we get the doctor's appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I've got a doctor's note saying I need to use a computer for essay exams.
I forget the note in the car for about a week. Then my friend with CP who's in the same class says something about the deadline for accommodations for the midterm coming up soon, so the very next day, just before closing time, I give my note to someone in Disability Student Services, who tells me that as soon as they process my note, that accommodation will be added to the list of accommodations I can register for on the website. Which I have to do for every single exam, for some reason, which requires that I actually know when an exam's coming up, so most exams I go without any accommodations. It's only for the major ones that I get accommodations.
A couple of weeks pass, and the website still says I get only room alone and double time, no mention of a computer. So I decided, today, to go bug DSS about this because my exam is coming up pretty soon.
Well, here's what happened:
I wandered in and saw a sign right in the doorway saying [incomprehensible]. I'm about to walk right past it when it occurs to me that it might be important, so I take a second look. It says something about going somewhere else, but I have no idea where. I do have some keywords, though: 'atrium' and 'triage desk'. So I go to the front desk and ask where the atrium is, and they point me upstairs. Then, upstairs, I ask someone at some other desk where the triage desk is, and they point me back downstairs - apparently what I've been calling the front desk is actually the triage desk. So I head back down there.
At the desk, the guy doesn't seem to have a clue what I'm asking for. Probably largely because I don't really have a clue why the sign in DSS said to go there. Finally, he gets someone to come over and lead me past the sign to the actual DSS desk, which I go along with because I have no idea where they're leading me.
I talk to the person at the DSS desk, who informs me that anyone who could help me is in a meeting until 3:30, but also says something about going to the DSS exam office. So I wander off to ask random people (including the guy behind the 'triage desk') where the DSS exam office is, and end up in a hallway looking at a door that says something about exams being in progress. I walk past that door, thinking the sign means I shouldn't go in, but take a second look when I realize the door number of that door matches what I was told about where the DSS exam office was. The sign actually says I should enter quietly because exams are in progress. So I enter quietly.
There's a person behind the desk, good sign because the person at DSS said there might not be anyone there. But it turns out that person can't actually do anything related to exam accommodations, just tell me once again that anyone who could help me is in a meeting until 3:30. By this time I'm overloaded, so I complain pointlessly about how inaccessible DSS is for me, and then leave.
As soon as 3:30 comes around, I'll go back. Hopefully, I'll be able to fumble into actually getting what I need. But it really makes me wonder, why services intended for people like me are so hard for people like me to actually access. And what's really frustrating is that I don't understand the system well enough to figure out what's so darn inaccessible about it for me, and every time I say so, I get a big long string of incomprehensible bureaucrat-speech that doesn't help me at all but is supposed to explain this to me. About the only accommodation I could think of is to have some sort of advocate or something go and manage the system for me, but the closest thing I have to that (one of the people who's in a meeting right now) is just as incomprehensible to me as the rest of them.