Wednesday, August 27, 2014

Get this bus off me: reaction to Epilepsy Foundation's HOPE mentor training

I recently (recently ish) went to a training to be able to do epilepsy education presentations. The only information most people have is bad information, even worse than autism misinformation, & with autism at least some good information exists, & with autism at least some acceptable pop culture narratives are appearing. In theory I support more public "awareness" & education about epilepsy.

I say in theory because a lot of what I saw in practice I cannot support. It's hurtful. It tries to defend against stigma for some by adding to stigma for others. The focus is very confusing, in that there's vague acknowledgement of cohorts that aren't otherwise neurologically typical children, but it's just lip service. There's a lot of aspects and populations being denied, ignored, or glossed over.

To be fair, there are some good parts to their standard presentation. "Don't panic" features prominently in the first aid literature & that's good. I approved of many individual segments of the program-it's the overarching attitude that I find so problematic.

The overall message sounded like, in so many different wordings, "people with epilepsy are normal except they happen to have epilepsy, so they're ok." That is not necessarily true & that's not how I roll.

Factually speaking, many people with epilepsy would still have neurological, developmental, and cognitive differences or disabilities if you magically removed their (our) epilepsy. Many Autistics have seizure disorders, and they commonly occur with other developmental conditions as well. Common causes of adult onset epilepsy are literal physical brain damage, like traumatic brain injury and stroke. These things all effect a lot more than the regulation of electrical activity in the neocortex--we are not "normal except for the seizures."

Not only that, but epilepsy can and does have cognitive effects. Sometimes these are a result of the treatments (as anyone who has taken Topamax knows) but the seizures themselves do it too. We forget things or have trouble with time or finding words or our moods are effected postictally. These are things that happen. It should be ok to talk about it!

This focus on how cognitively typical we are not only throws those of us who aren't and never would be under the bus, it also does a huge disservice to people who don't have any other diagnoses. If a student has seizures that rub up against is language centers, it is unreasonable to expect him to write an essay or give a presentation in last period if he had a seizure in first--even if he's mostly fine. Expecting calm, solid emotional regulation from someone whose seizures effect that? Not reasonable. People who are around us will notice seizure related cognitive or emotional changes and difficulties--it does us all a disservice when the experts pretend they don't exist or are rare exceptions.

Besides that, it's trading on people's ableism. "Oh, we're not, you know, intellectually disabled. We're normal" is the actual narrative I heard promoted. This is ableist hierarchy of disability nonsense. It is lazy. Using other people's bigotry against a group (in this case, people with developmental disabilities) , saying you're better than those people and therefore should be accepted. That is horrifically disappointing from a national advocacy organization. "At least we aren't like those people, our minds are fine!" is not an acceptable advocacy technique. Acceptance is not a zero sum game.

I can't get behind this message, that people with epilepsy should be accepted because we're just like everyone else. "Perfectly normal" kept coming up. The correct message is we deserve acceptance because we are people. It shouldn't matter how not normal we are aside from having epilepsy.

I'm not and never will be "perfectly normal". I and others like me are still perfect. So, Epilepsy Foundation, you will need to park your bus somewhere else. I'm profoundly disappointed in your national program and the people you have doing HOPE trainings in my region.

Monday, August 4, 2014

Oppressive language isn't witty invective.

This is a pattern everywhere, but it really grates on me that it's a pattern in places where people should know better, and in places where people should want to do better to match up with their own self concept.

Frequently, oh so frequently, a skeptic or a feminist or a skeptic feminist or someone who cares about one or more important social issues will say something ableist (or they'll say something transmisogynist about Ann Coulter. That particular thing happens frequently too). This is someone who has a history of caring, at least to an extent, about social issues.

Someone will tell them that's not cool. Will they say "oh my bad" and rephrase? No. No they will not. Oh so frequently they will instead derail and ask for an exact list of "approved" and "disapproved" words, as though such a thing exists, as though they cannot look for themselves and see what communities do and do not denounce.

There are similar conversations with people who are heavily invested in their identity as skeptics. These are the folks who make sure you know that they are smarter and more rational and reasonable and empirical than thou. You must know, they are superior to you, and they are superior to anyone who disagrees with them, because the evidence says so, objectively. Just ask them.

Yet both of these groups, when you come right down to it, want to use marginalized groups as their invective. This is not in keeping with being interested in social justice--this is shitting on people. This is not in keeping with rationality and skepticism--if you are oh so superior to me, yet cannot disagree with me in any way but "whatevs, you're disabled & that's bad" your invective is not witty, it is just bigotry.  This is what Skepchick did when they decided to say "you DDoS because you're a 'tard" instead of "wow, what hypocrites to make a big deal about freezepeach and yet take down our website. How very sad that is. I wonder what it's like to have so much free time and so much cognitive dissonance?". This is what PZ does when he lazily, yes lazily, calls people or groups "stupid". This is what a whole lot of atheists in particular do when they call beliefs "crazy" or call religion "mental illness". This is what vaguely left ish people do when they call Ann Coulter the t slur.

This is not witty. It is not funny. It is not creative. It is lazy. It is not indicative of any superiority. It is bigoted. It is fucking bullshit. And there's barely any point in talking to any of the people who do it about it, because they generally don't want to actually criticise what they claim to be criticising. They want to continue throwing around bigoted ad hominem and patting themselves on the back for being funny.

The bigots are the only ones laughing with you, y'all. The only people who think you're superior because you crap on marginalized people are other folks who are more invested in feeling superior than in doing right. Punching down language may make you feel like a better person, like a witty superior master of invective, but it doesn't confront the issue at all. What the hell kind of skeptic are you if your entire argument is "but you're a marginalized person so you're wrong?"

The kind living in logical fallacy land, that's the kind. And unfunny. And likely not even hurting the person you're aiming for, but all sorts of other people. A good, and funny, take down will approach from a different angle, will actually confront the issue, and will not hurt innocent bystanders.

I don't see much of this though. I see lots of the same stuff we confronted in the lunch room in seventh grade. It wasn't clever then, & a decade later it's even less clever.

If you're so proud of your superiority, demonstrate it. If you're so into social issues, start treating all people as people. If you are just interested in being generically mean, keep up what you're doing.

Sunday, August 3, 2014

Remember autistic & person aren't mutually exclusive! Language, again.

This post is set off by a final straw but there have been a lot of straws since the last time I wrote about person first language. Lots and lots and lots of straws.

Not a day goes by that something awful about people like me, autistic people, doesn't hit the social media scene.

Not a day goes by that Autistic people and people who respect us don't comment on it, respond to it in posts, et cetera.

And not a day goes by that some parent or professional doesn't read the responses and say "put the person first! Person first language! Person living with autism!" or something of that nature.

If you read an article about horrors being done to Autistics, or where an autistic person poured their soul into writing something difficult for your benefit and all you take home is "I don't like this language", there are 10,000 problems & your attitude is most of them.

Once, I shit thee not, a parent read an article about a murdered autistic person & informed me that person was "living with autism". No they are not. They were murdered while Autistic. How someone can be this cruel and claim it's respectful is utterly beyond me.

Some disabled people prefer person first language, and that's fine. But when I hear able people getting upset about how "disrespectful" identity first language used by the disabled person in question is?

What I hear is "I need a constant reminder that you're a person. The moment I remember that you're disabled I cannot hold your personhood in my head".

This makes that able person a very scary and dangerous human being. This perception is not helped at all by the context of so many of these comments--so many times it's in response to a disabled person or our friends responding to horrors. Or sharing triumphs, but usually horrors because that's what sells newspapers.

You read about horrors and instead of engaging with our real and raw reactions you get all self righteous about the language we use to describe ourselves.

What hubris. And what a complete and utter lack of empathy. Responding that way is so far the opposite of respect there needs to be another word for it.

If you truly want to respect us, stop reminding us that we are people who happen to be living while experiencing traits which we currently diagnose as the syndrome of autism, & start listening to us. Get off your high horse and put your outrage where it belongs--aim it at the folks hellbent on making you forget that we're people.  That's where it belongs.