I’m not doing that

Apparently I’m confrontational. This is to the people who think this.

I’m too abrasive to do effective advocacy.

Too rude.

Too direct.

Too inflexible.

It’s because I say things like, “Autistic people, not non-autistic family members, should be directing the autistic advocacy movement.”

That means exactly what it says. It doesn’t mean that non-autistic parents shouldn’t speak up (or, indeed, speak for their kids at times) for the good of their kids. Nor does it mean any of 1000 other things that people read into it.

But that’s not how people too often hear it. And I’m the one who is supposed to translate my language into something that nobody can take what I left unsaid and make it say something I didn’t say. Something like “parent’s shouldn’t be involved in autistic advocacy” or “non-autistics are bad people” or whatever else I didn’t say.

Sorry. I’m not doing that.

I’m sick of disclaimers. I already have to put too many in place – see the above three paragraphs!

If I say, “people shouldn’t mention lack of services in the same sentence as discussing the murder of an autistic person by their family,” people think I’m saying that lack of services isn’t a legitimate problem. Well, I’m not. And I’m not going to write four paragraphs every time I say something like this to explain that, no, I didn’t say anything about your stress level or ability to get services your child needs.

Sorry, I’m just not doing that.

Nor am I going to pretend that non-autistics that are trying to appropriate my community’s identity are okay. It’s not. There is a difference between someone experiencing autism in themselves and someone experiencing it in someone else. Sure, someone else might have tremendous love and insight – which is awesome and great. And they might say and speak and do great things that help many people. I too will celebrate it. But it’s not your identity. It might be your kid’s, which means you care what happens. That’s fine.

I know there are decent neurotypicals (and, no, neurotypical is not an insult). I shouldn’t need to say that every single fricking time I write something!

I certainly shouldn’t need to go further and constantly gush over the people who do it right. You don’t become an ally so you can be gushed over. It shouldn’t be necessary. If I compliment or acknowledge goodness, that’s a fine thing. But it shouldn’t be required of an autistic person doing advocacy!

I’m asking for my community’s allies to loose a bit of defensiveness and not read everything written by members of the community they are advocating for as if it might be hateful towards them. I’m not hateful of neurotypicals. Nor are most of us (I’m sure someone can find counter examples of hate from autistics, but that’s not the point – I’m not claiming my community is perfect). Heck, I’m one of the first typically to call out an autistic who implies that all neurotypicals are evil or bad or hateful. But by the same token, I should be able to write about discrimination and problems we experience in a world not designed for us without everyone thinking that I’m implying all neurotypicals are bad or evil.

Our ability to speak about our own community should not be dependent upon being good little autistics. It shouldn’t be dependent upon people not seeing any way to take our words wrongly. It certainly shouldn’t be dependent upon people who claim falsely to be allies feeling good about our words. If you’re only our ally when we’re polite and nice and have the right disclaimers, you’re not a good ally!

For those allies that get this, thank you. We do appreciate it.

As Long as Nobody Complains

One way to figure out your social standing is to ask, “What does it take to take away one of my rights?”  The less it takes, the less your standing.

For instance, if you’re a bargain shopper camping in your tent (on public property) outside a Best Buy store on Thanksgiving, you’re pretty much going to get left alone by police and others.  Yet if you are homeless doing the same thing, you’re probably a lot more likely to get pestered, fined, or arrested.  Money has rights that lack of money doesn’t.  The identical actions, but for different reasons (gluttony is okay, poverty is not) result in completely different reactions that reflect the power imbalance of the people involved.  Clearly the homeless guy has less status than the bargain shopper.

In the autism world, and other places, the standard is often, “So long as someone with higher social status doesn’t complaint, you can do X.”  We see this often with service dogs.  So long as nobody complains about the presence of the dog, it’s allowed.  But even one person having a problem with the dog, for legitimate or illegitimate reasons, will often result in the dog getting banned.  Simply put, the rights of the person complaining (even if their complaint is baseless) are more important than the rights of the autistic.  The autistic is to be included, but only so far as it doesn’t cause anyone to get uncomfortable or annoyed.

It also comes up when an autistic child is mainstreamed.  Too frequently the complaint from parents of non-autistic kids is, “The autistic kid is distracting and limiting my kids’ ability to learn. He should be in a special school.”  In other words, my kid’s right to learn in this classroom is more important than your kid’s.  Sometimes multiple parents do this, but even one parent raising the complaint is often enough to cause significant problems for the autistic kid and his family.  Interestingly, however, this is never said about non-autistic kids – even non-autistic kids with a significant history of bullying, and thus distracting and limiting the ability of other kids (including, sadly, often kids with disabilities).  It’s a very rare school that responds to that type of complaint from a parent about a kid, and it’s almost never an option to remove the bully and place him in a special school!  Isn’t that interesting?

IEPs end up written this way, as do rules adults are supposed to follow when they need support.  “You can participate.  As long as it doesn’t bother anyone else.”  You don’t have the right to inclusion, since you’re different.  The others are merely tolerating your presence, a privilege you’re getting (so be sure to be thankful!) that they can revoke at a whim.  I’ll give a hint – that’s hardly inclusion.

The “as long as nobody complains” standard is used by a morally weak person who is already biased – it’s a misguided way to avoid controversy and avoid telling someone, “No, I’m not going to make this place accessible for you and/or your kid.”  It could be rephrased as, “As long as there is unanimous acceptance of the person, he can participate.”  Every other person however has veto power, and a person’s rights are continually at risk of being lost.  That’s a pretty powerless position, rife for bullying and abuse.  It’s about time that we either apply this standard to everyone or figure out a better standard.