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.

Friday, June 13, 2014

Because they let me play sports, Part 1

In 1995, Nike ran an ad campaign about the benefits of girls' sports. Not things like "I will be less likely to be overweight". Things like "I will like myself better" and "I will be less likely to get breast cancer" and "I will be more likely to leave an abusive relationship" if you let me play sports.

Not "it will make me prettier" but "it will make me stronger and healthier and happier". This was 20 years ago, and the ads were trying to sell me something, but that thing was not just shoes, it was "what you are doing 5 days a week is going to help you forever."

My parents were big on participation in athletics. I tried soccer, basketball, volleyball, diving, gymnastics, dance, about a month of karate. I was not actually a natural athlete either. But I played sports.

I was blessed (or nontheistic equivalent) with truly gifted coaches for much of my sporting career (first grade soccer, 9th grade diving, & 8th grade when my mom tried to be a volleyball coach are the exceptions). Coaches who didn't see their job as building champions, but as building happy healthy adults. My coaches--all of them--emphasized that the people wearing the same uniform are your teammates, not competition, that your job with regard to your teammates is to build them up, that everyone is valuable, that doing your best matters more than winning, that the competition isn't the enemy either, that your real competition is with  yourself.

I had mostly great sports experiences. I like myself more, because I played sports and had such positive experiences. I sucked when I started, but succeeding, feeling the impossible become difficult become easy become automatic? Confidence boost. I felt capable, because I built competence. This built confidence. I was valuable, even if I floundered everywhere else.

I like myself better, because I played sports.

I've written before about my mother being abusive, and about my last name donor's wife too. In light of this, it's strange that my parents had me play sports (or maybe not. People are complicated.) After all, if you let me play, I'm more likely to leave an abusive situation.

My mother was unpredictable. Last name donor's wife moreso in some ways, more controlled in her cruelty but therefore more innovative. Neither was a good parent by the time I hit junior high or so--when I really started succeeding in athletic endeavors. Last name donor's wife got scary first, & I started refusing to go over there. I was trying to leave an abusive situation.

And when my mother told me that if I went to my state meet on my own instead of trusting her to get me there on time after church or I wasn't coming back? I took her at her word. I still to this day think her goal was to intimidate me into staying & doing as she wished, but I left, and not much later I left that region of the country, out of her reach. She and my last name donor's wife harassed me at the homeless shelter (which really meant harassing shelter staff) and they harrassed my friends, but I would not be intimidated into going back.

Yes, I left the abusive situation, something I was statistically more likely to do because I played sports. I don't know if nonjock!K would have too, but maybe not. The world will never know. It's just strange to me that my parents may have given me the tools for me to leave when it was necessary for my safety.

Because they let me play sports.

Part 2 coming soon. That will be about disability & sports.

Wednesday, May 28, 2014

You, yes you, need Autistic friends

Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don't mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don't mean "translate my child to me" (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn't the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we're a disappointment, even if you do your best to hide that you're having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they're stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It's much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you--and like all children, Autistic youth default to loving their parents--seeing them find someone who reminds you of you? That's supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren't "stuck" with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we'll outgrow our disabilities (and when there's no sign of that, we're reminded that we're disappointing, because you can bet we're getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That's a recipe for severe anxiety, thinking that you're dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever--and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it's harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It's easier to believe you aren't Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can't speak for everyone) welcome friendly parents, but your child is one of us. It's wonderful but also overwhelming and scary to discover a place where you're "normal" when you've never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. "I'm not alone" doesn't have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn't alone, that there's a whole community that will embrace him because he's one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That's how the people I hang out with roll. Making friends with us isn't just good for your child. We're good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It'll make your life, your child's life, and some local Autistic's life, better.

Wednesday, May 7, 2014

Real People

Some will accuse me of perseverating or refusing to let go (of something that wasn't even exactly atoned for but whatever). I really don't care, because clearly this is something people don't yet understand.

Under. No. Circumstances. Say. Some. People. Aren't. Human. EVER. DO NOT DO THIS.

Others will declare I am being too literal, but the history of these declarations, particularly for Autistic people, demands I be literal.

It's not just the changeling legends of old. It's how they live on in systemic dehumanizsation of Autistics & other disabled folks, a legacy we will never escape without radical changes.

People will say "well I hate people, so be glad you aren't one," but I am so very not being even a little facetious right now. This is not a topic for levity at this moment.

People deciding we aren't human gets us hurt, it gets us killed, it does tremendous emotional damage in addition to physical. It makes self loathing just a little bit easier.

I knew I wasn't a real person by kindergarten. Real people don't need to stand up sit down stand up sit down stand up sit down good girl MnM. Real people's names aren't at the top of a behavior star chart when everyone else is mean and scary and in their personal space (so much for ABC, eh?). Real people are allowed to laugh and to cry.

Real people are allowed opinions, even unpopular ones. Real people's socks & underwear aren't scrutinized daily to make sure they aren't inside out. Real people don't have everything they love leveraged to make them perform.

And then I was declared a good facsimile of a real person-but that was no better. Real people are allowed bad days; facsimiles are not. Real people can have quirks and odd habits. Real people can say "no".

Even today the changeling & demonic possession myths live on: real people aren't almost drowned in exorcisms (the first murder of an Autistic I followed closely? The boy was suffocated by a minister kneeling on his chest 'casting out demons'. That makes the holy water drowning look tame). Real people aren't scared within an inch of their lives to "bring you back to me". There are lines one does not cross when dealing with real people, lines that are trampled over when it's just us.

Because we aren't real people, & don't even get the rights of them when we pretend our damnedest.

This is the history--and the present--you dredge up for our community when you say someone, anyone, "isn't human". It's a history where people start from that assumption & where anything is justified to change that. And nonpeople are always scrutinized so closely we're never going to meet the moving standard.

It isn't funny, it isn't cute, and it isn't acceptable. Think, really think, before you write.

Monday, May 5, 2014

The Feels Double Standard

Frequently (yes frequently. Not occasionally or sometimes or once in a while. Frequently) a parent or family member of a disabled person will say something really ableist and flagrantly made of red flags. Like, oh, "I wish my disabled child had died at birth".

For what should be obvious reasons, this tends to upset--or even trigger--disabled people. And then...the double standard sets in.

Abled people want us to understand this mother's tragedy, this brother's difficulty. They think we should stop confusing a parent who has said to mass media outlets "I wish my child had died" with our own parents. Patterns don't exist, don't you feel her pain? They insist it isn't saying anything about us (cultural context, like patterns, don't exist), we are nothing at all like that brave person's relative.

And then when we call bullshit on these silencing tactics and dismissiveness? Two thing happen, usually at once:

1. We are accused of being "irrational" or "too emotional" or "unable to view this objectively" or "too angry" or "projecting or any of 10,000 ways they have of saying "ummm I don't want to listen to you so I won't."

2. Invariably, able people, often but not exclusively mothers (who may or may not have disabled children), declare themselves triggered by those meaniehead disabled people, who have no empathy and make them feel unsafe.

Let's explore how we got here. Usually, the first thing a disabled person does in these situations is express that these storeies are triggering, and/or point ouut that uncritical reporting actively makes the world less safe for  us.

...The reaction to that, I already described: people demand that we understand the family's tragedy. Think of someone besides your self they say. Gosh, not all parents are like yours. Empathy. Shoes. Not like that child.

In other words, we say we're triggered by people wanting us to not exist, by saying they wish people like us were dead or they hate them or their disabled family member ruined their life, and abled people demand we understand that we're objectively wrong to feel that way.

That would make you angry too.

And then responding is irrational and triggering...except our triggers five minutes ago didn't matter. Oh but do theirs ever matter. Stop being so mean, gosh, how dare you cause someone to feel bad by calling out their flagrant bigotry.

"Being told I am expressing bigotry" is not a more legitimate trigger than "being systemically dehumanized and expected to accept that people want you dead".

Unless, of course, person A is abled and person B is disabled. Cuz in that situation, only the real person has real emotions, deserves real respect, or is at all even capable of being triggered.

Yes, this is how it works in most spaces. This isn't how it should work, it is predicated on lies and bullshit and people abusing their privilege, but it is how things function right now. Abled people? This is something you need to step up and change. You very conveniently have it set up so that we can't, because if we do we're the biggest asshats on the planet just for saying maybe an able person is wrong.

If you're truly dedicated to non bigotry, you should probably reflect on that. And start fixing it.