Monday, February 11, 2013

Not Every Comment Box is For You

Over the last few weeks, I've been noticing something that I've had a hard time being totally comfortable talking about. It's not just happened on one particular page, or between one particular group. It's something that has been happening between autistic adults in my communities, between parents and self-advocates, and between different groups of parents.

I'm talking about a lack of situational awareness within spaces here. This is particularly a problem when we're talking about the relationship between one's ability to control one's rhetoric and to shape it without too much emotional attachment and one's awareness of the space that ze is in. Too often, I think, we tend to leave drive-by comments or pick fights without adequately considering the time and place we happen to be in, or what might be happening there.

Entering Parent-Space
When we, as autistic adults, wander in to parent-spaces, we need to make sure we're aware of what the space is and what it is there for. Parent-spaces, such as parenting blogs, are designed as support and expression mechanisms for people who are working as hard as they can to help a child (or children) that they might lack the experience and neurology to understand fully. They are messy places, full of mistakes, and the good ones recognize it. They are also spaces where sometimes frustration is expressed. Pedantically lashing out at parents for failing to understand what their children are doing does not help, since frustration-venting posts are usually not written by people who are looking to have a level-headed discussion.

I'm not saying that we should never challenge parents. If they are posting about something that is abusive or truly wrong-headed, it's okay to try to have that conversation. You just have to be aware of the space and its intended audience, and you have to take into account what that means. If you go into a post on attempting the gluten-free diet and call it bullshit, then you can expect some angry responses. There might not be a scientific level of proof that it helps people, but it doesn't hurt either (as long as it's properly balanced), so picking that as your last stand against pseudoscience might make you some enemies that you need when it comes to throwing down against anti-vaxxers, chelation therapy proponents, and other people who would harm autistic children.

What I'm saying is: modulate your tone to match the level of harm you're addressing. If you feel the need to point out that there is proof that the gluten diet doesn't always work, you can do that, but respect the fact that people don't know whether or not it will work for them, and there are also studies that show that it works. The same goes for facilitated communication. The same goes for casein-free diets.

Parent-space is a hard place for many of us to exist in, because many of us grew up in a time when we were not recognized as people who needed support. Many of us had parents that considered our tics and traits to be behavioral problems that could be disciplined out of us. We want to protect what we see as younger versions of ourselves from people who would hurt them the way we were hurt.

What we fail to see sometimes is that the parents who care enough to join together into communities and blog are (mostly) not the ones who would do those things to us. Even the parents that are subscribing to some hateful, abusive bullshit treatments (like chelation) are doing so out of fear and desperation, not because they want to hurt their children until the children stop misbehaving. We need to remember that in parent-space.

We need to remember that, and we need to remember that we shouldn't fight over what amounts to emotional venting on the internet. If someone is writing a post about a treatment or a problem at school and you have some insight, share it. If the parent is just sharing emotion on the internet, though, we probably shouldn't hijack their posts and comment threads to push our advocacy agendas. Not just because it is impolite, but because it won't work. It will just reinforce the "bad autistic" stereotype and make parents less likely to treat us seriously in the future.

Entering Advocate-Space
That brings us to our next topic. Parents: go read this. Seriously. I will wait.

Good. Most of you are guilty of that. Not necessarily at the same level as the parents that were being called out on that post, but you still tend to do it. On some level, because you know that what we have is a developmental disability, you treat autistic adults as being less than fully adult. Some of you are really, really good at trying not to do this. A few of you (mostly, but not all, parents of autistic kids with autism yourselves), you manage not to put it across in written form. That's great, but it does still shine through in the times and places you talk sometimes.

I'm not meaning this to be a completely anti-parent post. There are a lot of really, really great autism parents who promote my work to each other, and there are a few of them that I have confided in when I needed to talk about things that are not fit for consumption on this blog yet. They were really understanding. A lot of them still tend to give advice when it's not necessarily being sought. Or, sometimes they try to make connections by telling me about something similar that their child did when I'm trying to bring up one of my problems to illustrate why I need some accommodation or help now.

That's a privileged position to take, even when it's well-meaning. It puts me in the same box as your child mentally, it defers from you the responsibility of addressing my concerns, and it ignores the fact that I am a full adult in my own right who is simply advertising my needs in an assertive way.

That shit needs to stop right now. When we, as self-advocates, talk about our needs, we are not always trying to connect them to your child. Sometimes we are. If we are, then that's great, let's connect them and maybe we can help you understand something from the inside that has been confusing you. I try to put myself out there to do that a lot, and I know a few other people who do the same thing. But that's not the only thing we do, and you need to realize that. Sometimes, we're trying to meet our own needs and goals, and we're not really concerned with helping you understand your own child.

Similarly, don't drive-by comment us about what you think our blogs need or how we could make it easier for you. These are not your spaces. These are our spaces, and you are guests in them. You are welcome to listen, and even to join in the conversation, but don't assume that you can solve our problems, much less that you should. When you try to, your self-assurance that you even understand what it is that you're trying to fix is usually unearned, and the reason you are treated rudely is because you're shooting your mouth off during a conversation that relies on prior knowledge you don't have. 

You might mean well, but what you are doing is privilege. That's the definition of it. We're trying to break it and to stop it from affecting us, and you come into our spaces and act like you can exercise yours to liberate us, and it kind of makes you look like assholes sometimes. You can give us supporting messages, or you can pledge to help us, but unless you're asked to give input about solutions, you probably shouldn't.

Similarly, don't expect us to be ready and willing to educate you about everything that we do have prior knowledge on just so that you can participate in the conversation. That is work, and you don't have the right to feel entitled to our work. If we have to backtrack to give you a primer in the middle of a conversation, that is work that we could have put into developing the conversation and solving the problem for ourselves. If someone wants to give you a primer, they will. If they don't, don't throw a tantrum over it being owed to you. The space you are in does not belong to you, and you only think it does because you are used to every space belonging to you.

We are used to no spaces belonging to us. We are building our own because of that. That means that when you cross the border into self-advocate space, you are the immigrant. You are the one who needs to make sure you understand the local customs before participating. In short, you are the one who has no ability to read the social expectations of others or to follow cues in real time.

Is it sinking in yet?

On your blogs, you expect us to respect your need for a safe space where you can express yourselves without being attacked. As you read above, I'm trying to make that clear to everyone, and I respect your need for it. It's time for some quid pro quo. Autism parents can't expect that autistic adults are going to be dependent, that we're childlike, or that we will surrender to your authority just because you're the adult. It doesn't matter whether we're physics professors or passing in our workplaces, whether were verbal or not, or whether we need assisted living. We're all adults. We are entitled to make decisions about our own lives, and while we need support sometimes, you should be supporting, not controlling.

For those of you who are already practicing this, who teach your children dissent, who are attempting to grow self-advocates and "bad autistics" because we need to be bad if we're going to get anywhere... thank you. You probably didn't need this post.

To the rest of you, I will say the same thing that I said to all the parents in my old Boy Scout troop:

Just because you're someone's parent doesn't mean you can come at me like I came out of you. From where I'm standing, you're just another person who's shorter than me and who keeps shooting your mouth off about shit that doesn't concern you. Now go chase after your own kids and badger them until they can't think straight. I'm handling this bonfire.