Monday, September 15, 2014

How dare I? How dare you not?

When a parent kills an autistic child, it's so predictable. People come out of the woodwork to defend the killer, demand we walk in her shoes, to stomp their feet and demand of me "how dare you judge?"

Easily.

How dare you not?

Who are you to decide that a child's life is so not worth living that killing them is a good thing? How dare you cheer on abuse and murder? How dare you support execution of someone for the crime of having a disability? How do you live with yourself?

Judging someone for rocketing past the fuzzy zone and straight into "that is just awful" territory is easy. It should be reflex, easy as a blink or a sneeze. Our (well, my. USian) culture has a big taboo, though, against this evolutionarily advantageous reflex, and it blames the Bible.

Here's the thing though. That "judge not lest ye be judged" thing that people like to throw out? It doesn't say "do not evaluate things". It doesn't say "thou shalt not come to conclusions and announce them". It says "you will be held to the same standards you hold others to".

"Don't kill your kid" is a pretty low standard. I have no doubt in my mind that I can life the rest of my days without committing, or even considering, infanticide. I'm a bit terrified, though, of all the parents who feel this is too stringent a standard, who are eager to make clear that maybe they will kill their kid, they're just not sure that "no killing" is a fair expectation.

In a world where "not murdering your child" is a standard many people are unwilling to commit to live by,  a world where unrepentant murderers have cheering squads, no young or dependent person is safe. I fear for the children of people screaming "don't judge". When you shout at, harass, threaten me for holding folks to this very minimals standards, you are saying you don't think you can meet it (or can't be assed to try, speaking of scary). This doesn't make me the problematic person in the scenario.

"Don't kill people" is a standard that should be effortless. People who can't or won't meet it should be judged, swiftly and harshly. It should be as easy as a blink. It is as easy as a blink. If you can't be sure you can meet this standard, that's your deficit. I will continue to easily, effortlessly judge people who kill their children and dependents, because evaluating "that is not an acceptable action" is the right thing to do.

Edit: pic added for pinners. Not related to content of post. It's from magnetic resonance angiography.

side view of the blood vessels in my brain

Wednesday, September 10, 2014

Things about working with "emotionally disturbed" children that will break your heart.

This is a response to the awful, pooooor aduuuuuuults Cracked article about working with "troubled children". I worked in a classroom for kindergarten-4th graders with an educational classification of Behavior Disorder/Emotionally Disturbed. I loved them all, each and every one. Most of them had been through more by age 7 than anyone should be ever. This post is dedicated to them. I hope they are all safe & healing now.

Many adults who work in schools, particularly in special education settings, aren't there for the reason I was there. I was there because of a love of children, even (especially) difficult children. I was there because I remembered struggling and I wanted to be the adult who wasn't around when I was a student. I tried. But the system is set up to fail. Here are the things about teaching my "emotionally disturbed" students that ultimately broke my heart.

1. Their difficulties don't arise out of nowhere.

The majority of my students had spent some time in foster care--meaning they had been removed from their families of origin. Others had early onset mental illnesses. Some had both of these factors going on.

White children who are dealing with enough at home that they get removed from their parents in this part of the country? They are dealing with multiple kinds of abuse. So we had 8 year olds who were having flashbacks to being molested. I had a kindergartener who saw her mom get stabbed. A student whose stepdad took his medication for funsies, making the boy's medication levels completely unpredictable. Even the students who had never been removed were dealing with not optimal home environments. The parents just didn't have the coping skills, & things an adult gets away with? Gets you classified "emotionally disturbed" if you copy it at school.

What this meant in practicality was that we were often trying to undo what happened over the weekend, or we were trying to help a student who always felt in danger to learn and to practice emotional regulation skills they may have never seen modeled before. That's setting some students up to fail--if they've never seen emotional regulation, and they neurologically don't have a frustration tolerance, learning & "behaving" is tasking their resources to the brink.

2. Other adults are unempathetic assholes

The systems set up in these classrooms tend to run on "points" or "tokens" and they lose tokens for Behaviors. Some may call it "failing to earn" but to the students, it's losing. Keep in mind that these are fairly young people, and they often are at a distinct disadvantage in emotional regulation.

I have seen adults, multiple adults, gleefully tell students how many points they're losing. This tends to send them into a downward spiral because not getting all your points = not getting privileges (we're not talking a big cake. We're talking craft supplies here). I have seen teachers goad students who are doing the best they can to self calm into getting more upset.

If you have a young person with emotional regulation difficulties, and they are trying to talk themselves down when they had a bad start, just shush and let them talk themselves down! This is a big step for many students I know. Talking oneself down, even with a "tone", is much better than dumping a desk. (My strategy for "a desk is about to get dumped" is "jump onto the desk, Gollum pose", because being ridiculous can interrupt a downward spiral & it isn't threatening. I've never seen anyone else use this strategy).

I have seen teachers who were supposedly trained in deescalation get into the face and space of a student who has suffered severe abuse & is having a hard time. Then when the student runs or pushes them away, the adult uses this as an excuse to take them to the ground. Getting in someone's face is not deescalation. Moving away and shushing or saying soothing, validating things is deescalation.

Behavior Disorder classrooms are a place where seclusion & restraint are very popular. And never let anyone tell you for a minute that it's not punitive or retaliatory. It is punitive and retaliatory. If a kid shoves a boring book off their desk, that's disrespectful, sure. It is not something that is a risk to anyone. There is no excuse to restrain a kid for that.

My classroom had a room that was ostensibly a break room. It isn't a break room when you shut students in there, no matter how many beanbag chairs are in there. Saying something smartassed is not an excuse to lock someone in a room. It's like the adults in these settings have forgotten what it is to be small, young, and have a limited coping repertoire. And they punish the students in abusive ways for manifestations of their disability. That's not ok. That's not helping.

3. You will have to call CPS. They will blow off your call.

As I said in point 1, most of my students had been in foster care. Most of them had dealt with abuse or neglect. Some of them were still dealing with abuse and neglect.

As an educator, I was a mandated reporter. As the person who would jump on a desk, raise my eyebrows, & set off a giggle fit instead of encouraging rage, I was the Trusted Adult. They knew I was on their side.

Being Trusted Adult sucks sometimes, because a small child will tell you the very gory details of what started happening when he moved from his mom's house to his dad's. And you will think you can help, you have to report to CPS, and CPS isn't perfect but they can do something.

And then CPS will tell you that the kid is lying, don't you teach behavior disorder? Those kids lie. That is what they will tell you.

This is the hill I chose to die on. A student confided in me, things I'm pretty sure most young people wouldn't think of out of their imagination. I called CPS. CPS told me my student was lying. I said he wasn't. They said they'd believe me if the lead teacher in the room called. The lead teacher in the room elected not to call.

And I walked out. I couldn't help this young person through the accepted channels, but damned if I was going to sit there and pretend it was ok to call him a liar. I could do more good not in that classroom, & that's sad.

Many many students in these classrooms are in them because abused children act out as their only way of asking for help--and then their being in these classrooms is used as an excuse to not help them. It isn't ok. It will break your heart into a million tiny pieces.

4. Your students will be blamed for anything that goes wrong within a half mile radius.

A goal of our class was to prepare our students to go back into the mainstream classrooms. They were mostly academically on grade level in at least a couple areas. They could mostly comprehend the work, it was dealing with the behavioral demands of the classroom or the amount of busywork that made things a problem for them in the regular ed classrooms.

Part of the least restrictive environment, then, was that they would go to music and PE with the other students at their grade level (with or without a teacher, depending on how they were doing that day) and had recess and lunch at the same time as their age peers. In theory this is a start, right?

In practice, the other students learned very quickly that if you do something obnoxious on the playground, you won't get in trouble if you blame one of my students. Even if it was obviously not something they would do (the other adults didn't really care what my students would or wouldn't do, they were Those Kids). I had students be blamed for throwing sand when they were in a swing on the complete opposite side of the school yard.

And heaven help the student if they're going to academic classes with their typical peers and someone can't find her book or pencil. Obviously it was my student. Those Kids Steal/Hit/Draw On The Walls. Except...no they really didn't. My students did act out sometimes but they didn't do a quarter of the things they were blamed for.

And the PE teacher, music teacher, regular ed teachers? They were nearly as bad as my coworkers in terms of nitpicking at their behavior. A frustrated sigh is age appropriate. Crumpling up a bad drawing is pretty normal. That is not call to demand that I take them back to the self contained classroom. I see typical kids on the other side of the room throwing their crappy drawings at each other, what on earth is this double standard?

5. You will fall in love with your students, & you may not be able to save them, & failing will never. stop. hurting.   

The thing in point 3? Actually happened. For reals. The student in question was about to go back to his home school district, his regular ed classroom with resource room time if he needed a break, when everything went to hell. He went from reading to me and discussing the stories to all sorts of not ideal stuff that I won't discuss because our worst days deserve to be at least a bit obscured. It was a fast downward spiral.

And another student? Really only needed sensory accomodations probably and only ended up in my class because he was defending his right to them. But because he had been placed in our classroom had to work his way back into typical classes and was always considered a Bad Kid because one of his teachers had refused to work with his needs. If you don't get out of the emotionally disturbed self contained classroom by high school you're stuck forever.

Another? Ended up going to the special day school for kids with severe emotional challenges. Another got pulled out of school entirely because his parents didn't want other adults able to observe him. That's frightening.

I couldn't save them from their families, couldn't heal their coping mechanisms. But I loved them to bits, and I know it was mutual. A big hug and "I love you" made it pretty clear. "I wish you were my mom".

"I made you this necklace to play with so you don't break your pretty one".

cylindrical wood beads on fishing line
 
I have had this necklace for over 10 years. One of my students from that classroom made it for me. Of all the things he could have chosen to do with the craft supplies, he chose to help me not break things, because breaking things loses points whether you meant to or not. That's a lot of thinking outside himself, huh?

But I couldn't save them. Too many adults who work with young people think only about themselves, act as though their students are having difficulties just to piss them off. And it isn't the case at all.

Maybe you won't fall in love with them, which is something I'm sad about. Love is a thing my students needed, instead of being made into monsters and adversaries. They had enough adversaries.

I loved them, they loved me, & it breaks my heart that so few other people saw what I saw.

Saturday, September 6, 2014

Filling a need: Autistic PoC Anthology Crowdfunding Request

Autistic Women's Network has an exciting, new, first of its kind project: An anthology of writings by autistic people of color (PoC). Lydia Brown of Autistic Hoya will be editing, and the call for submissions is here.

But to make the anthology a reality, we...need money. So what is going to happen now is I am going to tell you why this project is important to me, and then I am going to link to the crowdfunding site.

As readers may recall, I have been around a while (diagnosed in 1986, started doing the activism thing in 1999). You may also recall that I am biracial. So I came of age, and came to advocacy, in a period of time when there were very few role models. My college library's section on autism had:

-2 books by Donna Williams
-2 books by Temple Grandin
-2 books by Jessie Park's mom
-a book by Bruno Bettleheim

and that was about it. The public library also offered me Tony Attwood's book, Stephen Shore's autiebiography, Liane Holliday-Willey's book, and 2 general autism books. All by white people. Most by women, although the professional books made very sure to remind the reader that autism is more common in boys.

Now I'm going to ask you to think of the first 10 vaguely public autistic people you can think of. Quick!

Did you think of 10? Do you know 10?

How many of them were PoC? According to the books, autism occurs in the same rate among all races, ethnicities, classes, all the demographics. Yet most people who can come up with ten Autistic people can only come up with ten white Autistic people.



Image is 2 medium to fair skinned female presenting people, both with dark hair, dark eyes, and glasses. The person on the left has short black hair, is visibly of Chinese descent, and is wearing a blue t shirt. The person on the right has long very dark brown hair, is ethnically ambiguous, and is wearing a burgandy tank top. They are standing on a hotel luggage cart.

The above picture is me with Lydia, the anthology editor. We were being silly and riding around on a luggage cart.

A thing that any Autistic PoC notices at most autism events: they are mostly populated by white folks. Organizations around autism tend to be predominantly white, the parents who can afford to go to conferences (and the Autistics who can afford to go to conferences!) are predominantly white, school districts that can afford to send their teachers or other professionals tend to be majority white--it's really obvious inequality when you see it. This year at the Autism Society conference a speech language pathologist told it like it is: we need more color at these things.

Autistic children who are of minority heritage are diagnosed years later than their typical peers, often after years of struggling, being labeled "bad", and missing out on key services. There are all sorts of heartbreaking reasons that tie into this and other people are better at discussing the issues that come up in their communities.

But one of the things this leads to is that the children who are diagnosed? Still don't have as many role models they can relate to. I just can't relate to Temple Grandin for a number of reasons, and the little boys and girls of today are still hurting for role models who look like them, who understand the cultures they grew up in, who understand being racialized and dealing with ableism at the same time.

Image is a small medium skinned smiling girl with curly dark hair smiling standing in front of a lighter medium skinned female presenting person with dark hair in pigtails, also smiling. The little girl is wearing a hot pink swimsuit; the adult is wearing an orange swimsuit & purple tank top.

This is me with a young friend of mine, Emily (photo used with permission). Em is 4 years old, also biracial, and also Autistic. She's funny, friendly, extremely happy...and going to have a different experience of being Autistic than is expressed in most of the narratives out there. We are building an Autistic community, we are building quite the library of writings. Emily deserves to see herself reflected in those writings. If she goes to autism events, she deserves to see people who grok her experiences.

Knowing people who can relate to my Autistic brain: great and validating. Knowing people who can relate to being racialized: validating. Knowing people who grok being Autistic and dealing with racial issues? Priceless.

I want the next generation of Autistic kids who go looking in the library for stories they relate to to be able to find more than the autiebiographies and the doom and gloom books. I want them to see that, contrary to what the media will tell you, autism is not a neurology reserved for upper middle class white boys. They are not alone, even if they're the only child of color in their class. I want their parents to feel less isolated, by reading things by people who have been where their child is. I want their professionals to have a resource for how things interact, how the autistic experience is different across cultures. I want something to touch that shows our diversity and our shared experiences.

Do you want that too?

If you are able to donate, it'd be much appreciated. The Indigogo link is here. Please pass along the fundraiser, and please pass on the call for submissions as well.

Thursday, September 4, 2014

Don't do what the bullies want-or, meaning well isn't always doing well.

Content note: bullying, bodily fluids, empathy failures.

I am writing this mostly about a specific incident, but there are dozens of specific incidents it could easily be about.

This week, a video was released of a young man who thought he and some other kids were participating in the ALS ice bucket challenge. Instead of ice, the other kids dumped a bucket of sewage on this boy's head. And they filmed it, so as to spread the humiliation.

The boy's parents did something that displays a lack of thinking, a lack of empathy, a lack of understanding media, a lack of understanding bullies, or a combination of the above:  They released the video to media.

They released a video of their child being drenched in the contents of a toilet, taken to humiliate their son by spreading it, and it is now being seen worldwide.

These parents did exactly what the bullies wanted. They are humiliating their son on a global level. How did they think this is a good idea?

They mean well, they say. They're pressing charges (and I hope they nail the other kids to the wall). They say they want to spread awareness or something (disclosure: I do not know the child's name & have been immediately shutting all articles that link to the video. I will not participate in the humiliation of this boy.) but could they not do that without plastering around the internet the video? Would it not have been more poignant and more ethical to ask the young man his thoughts on the matter? That would humanize him, as opposed to showing a video that was made solely to mock.

This is part of a disturbing trend that I see from parents & caregivers who "mean well", who love the Autistic in their life. This trend is that of publicizing the Autistic person's often very painful social difficulties, spreading them far and wide to get support or 'raise awareness' and a variety of other excuses.

This is slightly different from the parents who post their child's most vulnerable moments to get sympathy, but...not really. The main difference here is are they saying they want sympathy for themselves, or are they purportedly doing it "on behalf of" the autistic person? Either way, they are spreading private, often embarrassing things about their child--I remember earlier this year a mom trying to have a virtual birthday for her child who has no friends, do you know what it's like for everyone to know you have no friends? It's awful. Now magnify this by millions. And they may not be gaming for Good Person merit badges, but they sure seem to get an awful lot of them. More than the people who are blatantly embarrassing their child for sympathy even, because golden intentions.

If you are tempted to post the mean things someone did to your Autistic brother, or if you are tempted to tell the world your child has no friends so you should LIKE them on Facebook, I want you to try something.

Ready?

Are you sure?

Fucking think first. Use that empathy you supposedly have. Think "if that was my name and picture, would I want this posted? What if it goes viral? Do I want my next boss to see it when they google me? Do I want dating partners to see it if they look me up? If I become famous for something else, is this a thing I want coming up in features?"

If the answer is no, you would not want that, then don't post it about the autistic person in your life.

It's really appalling that I need to even say that. This is pretty intuitive, isn't it? Who's missing empathy again? Probably the people helping bullies humiliate their children.

image is a white cat & a black cat snuggling in a green papisan chair

 Pic unrelated. It's my cats snuggling in a chair. GABA is barely visible & Purkinje looks smug even in his sleep.

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.