What "disability rights is a joke" actually means

Content note for uncomfortable truths about abuse, neglect, and murder. Also for sardonic tone.

Remember I wrote back in February about Skepchick's big ableist mess and double down and triple down?

Remember that bit where they decided that I'm not a real person but instead a 4chan troll identity who exists to make social justice look bad? Because "disability rights is a joke"?

Maybe you think you're an anti oppression activist & have thought that, or you have friends who express that, who think that ableism isn't really and that disability rights is ridiculous. Before you get on that train, sign on to that idea, think about what you're really saying:

You are saying that the right of disabled people to live in places that aren't institutions is a joke.
You are saying that our right to an education is a joke. Young disabled people who should never have had to become symbols have done so, just advocating for their right to go to their neighborhood schools.
You are saying our right to adequate medical care is a joke. People are denied organ transplants every day because of disability, and apparently that just tickles your funny bone.

You are saying that curb cuts and talking walk lights at intersections are absurd. You are saying that ASL interpreters and elevators and ramps and Braille and automatically opening doors and kneeling buses are worthy of ridicule. That you get your jollies thinking about the disabled people killed by police--how many neurodivergent and Deaf people, particularly PoC, were injured or killed by law enforcement? A lot, that's how many.

You are saying that the very idea that a disabled person abused or killed by a caregiver might, you know, deserve justice? Is preposterous. Never mind that we have a much higher rate of being murdered and abused than non disabled people do. Never mind that our killers are portrayed with sympathy. The part that baffles you is the part where we seek justice.

And the hilarity just doesn't end there!

You think my right to sexual autonomy is a joke. Judges have declared that people are too disabled to have been raped. Not that forcible sexual acts didn't take place, but that they don't count because the victim is disabled. Yuk it up, because there are jurisdictions where people with certain disabilities are considered unable to consent to sex. Isn't that just so funny, that we are considered unrapeable and yet when we choose to engage in sexual activity we need to be protected from our own inability? Bet you're just busting a gut. Will you pee yourself when I tell you that frequently, disabled people are placed on birth control or sterilized without consent? I can just see the tears of mirth running down your face as I tell you that this serves to protect people who serially sexually assault disabled people. Oh I didn't mention your favorite part of the joke, did I? The part where over 90% of disabled women are sexually assaulted, many over 10 times.

Still laughing?

It's autistics speaking day...and I have not much to say

Today is I think the third? anniversary of the day some Australian group decided that not using social media was analogous to understanding being autistic. And a couple friends of mine said "ummm how about you listen to us instead?" and it's still going strong.

My first post on this blog was for that Autistics Speaking Day. This post is too. Except I don't have a whole lot to say.

I've been saying the same things for half my life. I've had to say the same things for half my life because people, on the whole, don't listen. I don't have much new to say because that would build on the old. Until the old is heard the new won't make sense.

I dearly love making sense, even though it tends to make angry people who don't want to understand.

If you are a parent, your child still needs to know they are the child you wanted and dreamed and hoped for. That isn't going to change, though I'm sad I have to keep saying it. If you are an Autistic person, you are a person who deserves to be treated as such. If you are my friend, know that I love you fiercely. If you are my community member & I haven't met you yet, welcome.

Maybe next year there will be call to say something new, instead of self echolalia. Echolalia is also communication, though, so it will meet my needs for now.

Image is a beaded bracelet that says YES on one side & NO on the other. It's a way of speaking when mouthwords won't work.

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.

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".

 
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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

Guest Post: Life is Hard

This is a guest post by Myria, who does not have her own blog but may borrow mine at any time.

My daughter is going into kindergarten next year and I'm scared. I know that if you are a parent you can probably relate, regardless of your child's diagnosis. Specifically, to give a small sample -

I am worried because my daughter does not yet have a way to communicate everything she needs to say. I am worried that her sleep issues will keep her out of school, that seizure activity will be mistaken for purposeful misbehavior, that purposeful misbehavior will be mistaken for seizure activity, that she will become overwhelmed and not be able to participate. I am worried about her being objectified as either the sweet little disabled girl or the problem child. I am worried that her intelligence and competence will be dismissed if she can't jump through the school's academic hoops.

My daughter is not autistic, by the way. She has Patau Syndrome, which means she has an extra chunk of the thirteenth chromosome, but many of her challenges are shared by people with disabilities unrelated to hers - me, for example. I am autistic and she is not. We have some strengths and difficulties that are different, and some that are the same.
 

I took my worry about next year and did something productive with it - I went to an IEP training for parents of children with various disabilities. Going into a roomful of parents was daunting, both because it was a room full of people I didn't know and because as parents, we can and do get away with a tremendous amount of ableism. At this training though, I was pleasantly surprised. The atmosphere was positive and encouraging. I learned a lot of useful information that will help me with my daughter's IEP team. The speaker was fluent in presuming competence and so were the other parents.

Except for two.

They talked about how difficult life was with their son and how no matter how hard it is, you just got to accept that the child you dreamed about never existed, and you got to be the best parent you can be to this child no matter how hard it is life is so hard we're so disappointed we're soldiering on...
 

I've heard this before, of course I have. It's everywhere. When my daughter was newly diagnosed and her doctors would not speculate about her life expectancy (at four months old, she had already beat the odds they would have given her at birth), I was isolated in my terror, haunted by images of tiny coffins every time her breath faltered. I went online seeking connection and support, reading along on forums for parents of disabled children. Guess what I found? Autism parents. My mother was great, and for myself I had stuck to the autistic forums, feeling no need to go into the parent spaces, so I had almost no previous exposure to autism parents. I was shocked and wounded and struck with a deep anger. I clearly remember (can't forget) posts I read during that time.

"How can I feel connected to a child I can't hug?"
 

"How can I love a child who won't look me in the eye?"

 "It's like she's not even human sometimes."

How dare they. I was counting my baby's breaths and the seconds between them and how dare they. I was like the child they said wasn't human while I silently pleaded with all the universe that my baby's seizure would stop, that this wouldn't be the last day. Everything that has ever been used to hurt me, to discard my humanity, to shut me up so others could use me as they pleased, I read on those forums in posts written by parents. They couldn't love their children who were like me and I just wanted my baby to live.

I am disabled. My child is disabled. These are separate facts that cannot be separated in my person.
 

And back to the present day -

I am like the child that so disappointed the parents at that meeting. I sat there and didn't say anything because (like their child, like mine) sometimes I can't, and because a crowd of parents is not a safe place. And then all of the other parents, all of them, and the speaker too, gently turned the conversation around until it was at a place that affirmed the dignity of this child while addressing the parents' concerns. During the course of the conversation, the negative parents slowly adapted their language and affect to match the rest of the parents. Did it stick? Who knows, but it gave them a chance to see another way.
 

Support is important - but if your support network is poisonous, go elsewhere. If there is nowhere else in person, find people online who support you without dehumanizing your child. They are out there, I promise. 

1 Corinthians 15:33: Do not be misled: "bad company corrupts good character."

Myria lives in the Pacific Northwest where she attempts to keep her socks dry. She is autistic and lives in a neurodiverse household (including two cats who live with Siameseness)

Using a Privileged Voice Responsibly

 angryblogging


If you are an allistic person, trying to be an ally to autistics, there are things that you don't do.

First and formost:

UNDERSTAND WHAT THE FUCK YOU ARE TALKING ABOUT.

Do not say things about Neurodiversity, the movement, that are flagrantly untrue. Four hundred of us will say "um that is wrong" and yet people will say Well This One Able Mom Said and they'll listen to you.

If you are our ally, you do not "if you don't X you aren't human".

You do not. You do not. You do not. Learn some history, learn the changeling myths of the past--so many were about us, and so many of us got killed.

Learn some recent history. It's May and already a dozen disabled people were killed, the stories that were told not even saying our names. Instead they were about our 'loving' killers.

We aren't human. That is the cultural meme. Do not spread that. Do not wave your privilege around to reinforce the most harmful of cultural memes. Use it to destroy them or you are not doing good.

To use your privilege voice for good, that's what you have to do. You have to tear them down. Guess what? People aren't going to always like you, when you use your privileged voice for someone other than themselves.

If you only lend us your privileged voice when things are all fuzzy lovey warm for you, then some other privileged asshat comes by and doesn't like it and you completely dump us in the dirt, you're not helping.

Indeed, that is less than helping. Because you tricked us. You trick us into thinking that maybe our words will be listened to when they come out of a privileged mouth and then you say "oh well actually it's ok to say fuck autism, if you don't you aren't human" and you're back to completely untrustworthy.

Use your words responsibly. And do not make alliances you have no intention of keeping. If your motivation is love and hugs, be up front about it. If you want everyone to like you, you're shit out of luck. Allies need to earn trust, and other privileged people don't like being told they're wrong by a real person.

When I tell them they're wrong they make shit up (you believed some of it!) and they make excuses for not listening, but if you're a human they have to at least take it under advisement. Selfish people don't like that.

But it is so much easier to backpedal and throw us under the bus you dragged us out from under, isn't it? That makes you not an ally. That makes you using us for popularity.

I wasn't your project in high school and I am not your project now either. If you want to be popular, make a kitty blog. If you want to do what is right, prepare for some blowback.

BADD: parents are the worst ableists

Yes, I do mean that title. Parents are the worst ableists. As though they think nothing they do is wrong because they produced offspring.

Too bad being a shitty human being doesn't go away just because you had a disabled kid.

If you follow disabled people around the internet harrassing them, you are ableist and a shitty human being.

If your idea of fun is mocking the frankly horrific treatment disabled adults have undergone, you are ableist and a shitty human being.

If you spend your time complaining about how hard your life is because you have a disabled child, you're ableist and a shitty human being.

If you make up new identities for the sole purpose of harrassing disabled adults, you are ableist and a shitty human being.

If you claim it's ok because no one will do it to your kid because your kid will be different, you are ableist and a shitty human being with a side of victim blamer (and thus extra shitty).

If you act in opposition to your child's future civil rights because disabled adults don't kiss your ass enough, you are ableist and a shitty human being and a truly ghastly parent.

If it doesn't occur to you that your child will ever be an adult, you are ableist and a shitty human being and a truly ghastly parent.

If you raise money for people who kill their disabled children, you are ableist and a shitty human being and a truly ghastly parent who shouldn't have custody.

If you defend people who kill their disabled children, say "don't judge" or anything about their shoes, you are ableist and a shitty human being who should not be around children.

Working against your child's interests and future is the definition of "terrible parent". It doesn't suddenly become acceptable when the child in question has a disability. If you treat disabled adults like shit, there's really no way you treat your disabled child well either.

Being a parent shouldn't get you a lower standard. It should raise your standards for everyone else. If you think your child's disability means you should get slack for saying and doing things that would get you arrested if you did them to typical people?

You are a shitty human being.

You are ableist.

You should not have children.

And using your child's disability as your license to be a shitty human being? That is the biggest bullshit excuse that ever bullshat.

Parents who this isn't about? Maybe you should start collecting your folks instead of sitting idly by while they harrass and threaten disabled adults, while they defend hurting children, while they fundraise for murderers.

Being complicit in ableism is what allows it to continue. If this isn't about you, then make it really not about you: don't tolerate this behavior in your friends and acquaintences. If you tolerate it towards us today, you tolerate it towards your kid tomorrow. It's too late once they're an adult. 

The schoolyard bullies never grow up, they've been attacking the disabled kid since the dawn of time. Just standing by was cowardly then & it's cowardly now. If this isn't about you...be brave.

If it is about you? Fuck off. You are a terrible human being and ableist and I will be here to pick up the pieces of your kid in a decade, but I want nothing to do with you.

Save Ryan White Part D Flashblog

To be honest, I just learned about the Ryan White Medicaid waiver recently--because folks who make laws are trying to defund it. As soon as I learned that, and what the waiver is, I was horrified. This waiver is not for the direct cost of HIV medication and treatment, it's for the other stuff.

This is a thing people don't seem to grok about chronic illness: managing it is a lot of work. I do not have intimate experience of managing HIV, but I manage other chronic illnesses, & I'm going to talk about that because some things do translate across illnesses.

People have this idea that if you have a chronic illness, you take your medication and are pretty much fine. The more nuanced folks will realize that your fine and everyone else's fine are a bit different, or that "fine" is relative, but people focus on the medications that directly deal with the chronic condition. That isn't even a small percentage. There is so much more.

Part of living with chronic illness is doctor's appointments. There's the appointments for regular maintinance of the condition, even when you feel fine--there may be blood tests, medication adjustments, other procedures. There's more urgent appointments when symptoms of the chronic illness flare up, and these almost always involve testing or medication changes or referral to yet another doctor in case something in another system is wrong. There's primary care appointments when you're sick, because for many of us with chronic illness, getting "a cold" or "the flu" or what have you is has the potential to cause a lot of problems.

One of the services Ryan White Part D covers is transportation for HIV patients. When I go to the neurologist it can be a whole day--hour on the bus, half hour of paperwork, half hour appointment, wait in the lab for half an hour, 15 minutes for the blood draw, hour and a half to the pharmacy, 20 minute wait there, half hour home. See, poor people ride the bus. Chronically ill folks are disproportionately poor, and recipients of this waiver are disproportionately women and children of color (who are also disproportionately living in poverty). A chronically ill woman with kids, or a mother of a chronically ill child? It isn't right to ask her to spend all day on the bus. Cutting services that allow her to spend time with her children isn't acceptable.

And sometimes transport is a need. A legitimate need. It is, in fact, possible to be too sick to go to the doctor. That was me last week. If the bus is the only option, getting to the doctors who take medicaid can be a trek. Making that trek while acutely ill on top of chronic illnesses exascerbated by viral or bacterial infections? Usually if I'm afraid I'll collapse on the bus or not get home, I take my chances. A parent doesn't have that option. A parent of a chronically ill child has a much more difficult call than I did in that situation--she wants what is best for her baby, her child. But taking a sick kid on the bus is miserable, the actual worst. The people who think cutting this program is a bright idea may say "take a cab" but that isn't realistic for many many people. That's not an acceptable solution.

Nor is cutting child care funding. I've never taken a child to my doctor appointments, but I have been taken to my mother's & my siblings' doctor appointments, and they went to mine. It is boring for the children who aren't directly being examined, and it is much harder for the adults to discuss the things that the appointment is actually about.

The programs provided by this waiver allow women and children to do more with their time and energy than manage HIV. This is important. Chronic illness is scary. It's so much harder to deal with when everything is sitting at doctors and riding the bus and playing alone because today's trips knocked mommy out (peanut butter sandwiches for dinner, because little kids can make those & mom is too tired to make dinner, even if she really wants to). The programs allow families to have a life outside of managing the illness--to have an actual family life. To have those moments of silliness. To have time and energy to enjoy each other.

"Not cutting medication funding" is nowhere near enough. It is a beginning but it's nothing to be proud of. It's not even the minimum of decency. Families dealing with HIV & getting services through this waiver deserve the help. They deserve to know more than daily management of the disease. Lending a hand shouldn't be too much to ask, not even a little.

Conditioned eye contact.

Tw:  forced eye contact, restraint & other abusive 'treatment' descriptions

I can remember the last few times I made true eye contact, as clear as a snapshot.

-I was too distressed to make words happen and no one around knew sign. Eyes wildly snapped from person to person, looking for someone who could read my mind.

-I was in the ER getting stitches on my finger, which I had accidentally locked in a car door. I told them to not tell me when they were sticking me with the needles. They told me. Eyes flew to those of the person with me.

-One of those folks who thinks boundaries don't apply to him was getting too close and too cozy on the bus. Again, probing for someone who could recognize my distress.

-Someone was threatening violence in my direction at a thing I used to do, and I was meeting with one of the folks who had authority. His words on the experience are "please stop trying to set me on fire with your mind."

The elements of these scenarios are the same. Something is happening. I do not like it. I do not like it at all, and want it to stop immediately. Yelling and swearing has not worked. I can't hit it or kick it or pretend it doesn't exist. Those strategies have failed or have a 99.9999% chance of failing based on pattern data from years of experiences.

But eye contact makes them stop doing the unpleasant thing.

This doesn't make sense, does it? You've heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That's not what this is at all! This is the sledgehammer. This is the safeword, if you will, the "this stops now it has to it has to it has to make it stop nownownownownow no matter what".

Where did I get this idea? Therapy. That's where.

When I was a very small little child, the first thing they tried to get me to do was "look at me". Now, if I was a small child now they'd be still coercing looking at them. The new and improved way of forcing eye contact is to hold a desirable item between the adult's eyes and then give it to the small child when they look at it. This is still gross.

Back in my day, however, it was all out war. They would grab your face, they'd hold your hands down, they'd pretty much sit on you. It was a full out wrestling match until you submitted and looked them in the eye. Then, they immediately stopped. They immediately let go of your face or your hands or stopped sitting on your or stopped holding your shoulders so hard that the bones ground or what have you.

I was small. Hitting didn't work (I tried). Kicking was a no. Headbutting only worked once, biting was iffy. Covering my face got my hands dragged into my lap and held there. Dumping the chair and running was only a few seconds reprieve and led to the least comfortable hold ever. They had no compunctions about prying my eyes open when I squeezed them shut as tight as I could. No boundary violations were out of bounds. The only way to make the awful stop was to look in their eyes.

Reality land does not, in fact work that way. Eye contact is not the way to make things stop. People who know me understand that it means "something that is happening needs to not be happening right. now." Most people don't know that. People who only sort of know me can grasp that it's bad (see: "stop trying to set me on fire with your mind") but they don't know what it means. Strangers take eye contact to mean the opposite of what it does.

My brain knows that for most people a straight in the eyes stare is not the signal for "something needs to stop right. now." but it isn't that easy. One of the deepest conditioned things I have is "eye contact is giving in. If you do that, the bad will stop." This is irrational and untrue and the world doesn't work that way. It's deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child.

This isn't what they thought they were teaching me. They claimed to be teaching me all sorts of things about eye contact. They didn't though. They wrestled me to the ground over and over to grind a lie into my head.

Skepticism's ableism problem again: Skepchick et cetera.

I'm a bit late to the blogging party on this one, which is ironic because it's all my fault that the Skepchicks are sadpants because their ableism was called as much.

I am not linking to their fuckups or to the posts that are followup fuckups because I don't give traffic to ableists. It is not a thing I do. Especially as it requires looking shit up again and I am tired and, well, late to my own party.

I don't always go to war with organizations, but when I do it's on accident because I mistakenly thought they gave a shit about being better people.

So. Skepchick authors (multiple!) collaborated on a sarcastic valentine to the jackasses who DDOS'd their site. Great! I love sarcasm directed at asshats!

Oh wait except their message had nothing to do whatsoever with how people who shout and holler about FREE SPEECH are big fucking hypocrites when they DDOS a site to shut them up. It was all "stupidest motherfucker" and "fucking idiot" and "I am truly impressed you remember to breathe".

Yeah.

"You are so cognitively impaired it is amazing that you can even handle autonomic functions" is one of the most revolting things I have heard in a while. And from people who pretend to be for equality it is even worse. They're oh so for social justice, except their go to insult is...still people like me.

So I message Surly Amy on twitter (because she illustrated it. Also I met her at the first geek girl con, and bought several surlyramics, which I can't even look at without gagging now) and also at the whole collective. Enter the white able tears! Like, right from the get go. My favorite was the "well you did it too!" when I called it an astonishing lack of thought.

Except saying someone didn't think isn't at all disparaging their ability. It's commenting on their action (lack of action). Their entire damn collective's lack of action, because that should not have gotten past all of them.

White able woman tears got more dramatic from this point. Rebecca Watson, who caught enormous amounts of hate for pointing out that cornering a woman in an elevator at 3AM when she had said she didn't want to be hit on is not cool, went full out double triple down ablesplainer nightmare. And she made it about the word "stupid". Now, the word "stupid" is ableist. However, that is not what I initially most strenuously objected to.

This is disingenuous as fuck, Ms Watson. I know that people like me are your go to insult, but your tactic is transparent: make it about the most pervasive word so that your critics look ridiculous to the majority, and ignore the entirety of your heinous behavior.

And then of course skeptics, being oh so skeptical, decided it was a false flag operation from various nasty corners of the internet. Never mind that the initial callout was from my personal twitter (with a picture and years of history, and a link to this blog with more years of history, also my name...which also, um, years of history). Obviously trolls.

No skepticism at all there, folks. Occam's Razor apparently clearly dictates that I set up this blog, my twitter, my speaking, authoring, et cetera solely to troll Amy, Elyse, Rebecca, etc. I've done all my activism, clearly, just so that the day would come when I could persecute them (for things they actually did! that actually suck!) as a troll. Yep. Or at least that's what they and their syncophants came up with.

Damn, if that is doing skepticism correctly, I am glad to be doing it wrong, since it is completely fucking nonsensical. They aren't worth that kind of effort, frankly, and it's really quite bullshit to suggest that my positions are anything but sincere. I have dealt with phenomenal amounts of shit for my positions.

So. Yeah. Skepticism fail. Research fail. Too busy crying privileged tears to think outside themselves.

So. That was a problem. But there was also a problem from someone who tries to get things usually, LousyCanuck/Jason Thibeault. It wasn't as vile as the Skepchicks going out of their way to be oppressive, and I've been trying to word it since we conversed on twitter (a truly exhausting exchange).

Ok, so part the first. "I don't think stupid is always a slur but I don't use it because it's imprecise" is doing the better thing for not exactly great reasons. Disabled people say that stupid is a slur. So you should believe the folks who say that. Yes, it is imprecise (much as 'nice' is) but I should hope that not hurting people is a high priority.

Also, um, citation needed for not always a slur. Disabled people are held to ridiculously high standards of evidence regarding things being hurtful where folks--the same folks--will take the word of other marginalized people. So this is not exactly ok.

The thing I really take issue with, though, happened in the twitter conversation itself. It was truly infuriating, in that Jason said it and that he seemed to think it was a reasonable explanation for people being intentionally oppressive assholes and that he didn't seem to be understanding why it's not.

He told me that anti SJ people will take ridiculous positions of made up outrage to try to make social justice look ridiculous, & so the Skepchicks clearly thought that's what was happening, and therefore they doubled down.

No.

No.

This is not ok.

Firstly, this says that y'all think disability rights is ridiculous. That no one would actually sincerely be against ableism. This is especially problematic in skeptic spaces, where "but having cognitive problems is objectively bad!" is such a common excuse for ableism. Fucking own your ableism, folks, say "yeah I am a bigot". But don't expect disabled people to be ok with you thinking our quest for rights is so absurd that mistaking us for trolls is the Occam's Razor Solution.

That's bigotry and it is wrong and you are not for social justice if that's your deal.

Secondly, this is again holding us to a much higher standard than it is them. See the section, above, with how very difficult it is to find my over a decade of holding strong disability rights positions. Why the hell do they not have to do research, but we're expected to be ok with them being flagrantly nasty because they came to the wrong conclusion?

Also it's excusing their behavior. Don't do that guys. If someone fucks up, hold them accountable. Consistently people have been feeling sooo bad for them because I publicly said I'm probably getting rid of my surlies. Oh. No. The. Humanity. But no one cares about the people actually hurt by their attitude. It's all about how sadpants they are that a few people called them on it.

There is no excuse. None. It doesn't matter if they thought we were...I can't even think of something more ridiculous than what they actually think, actually. This is indefensible.

This was not ok.

So, yet another disappointing organization that I thought I could respect. People who, it turns out, don't think I am a person. Who think I am their go to insult. Who think that we are so much non-people that their upset at being called out for being oppressive matters more than the dehumanization and such they are actually inflicting on us.

Feminism & skepticism need to clean their damn houses. I don't see this happening. Have fun with your able woman tears, y'all. I'm taking my ball & going to movements that think I'm a person.

Embracing love in face of fear

I hadn't planned on doing a second post for the Love Not Fear flashblog but this concept wouldn't get out of my head so here it is.

Long time readers and friends (and probably people who don't like me too) will know that I used to be a gymnast, that I play around on high powered trampolines when I can, that I have jumped off a cliff into freezing cold water (and can't wait to do it again), that I climb rocks, and possibly that jumping out of a plane and similar things are my entire bucket list.

They may also know that because of medical conditions, the risk of losing awareness and control are greater for me, and also that the risks that come with injury are greater for me.

What people tend to assume from this is that I don't feel fear. And that? Is not true. When I was a gymnast, I felt afraid of new skills. There are things I could do that I was apprehensive of every single time. Climbing challenging walls has moments of apprehension no matter how many times I climb the route and no matter how much I trust the person at the bottom. Jumping into Crater Lake? Was scary every single time. Skydiving terrifies me.

But I can choose to turn into that fear. I can choose to run away from it or run with it. I can fight it or I can embrace it.

Embracing the fear? It's odd. There's this thing that happens when you say "This scares me but I am opening up to new ways of looking at it. I am doing it anyway." I can run my Litany Against Fear and do the thing anyway, and find something besides terror, besides the mind-killer.

I can embrace the fear and find joy. I can see the fear for what it is and yet also find joy, find love. I can be afraid without acting fearful. Fearfulness turns defensive turns angry. I know this because there are fears that cannot be embraced, that are necessary, with little risk of reward at the end.

Many, though, aren't. And I will turn to those fears, like I spent years doing in the gym, like I do to jump off high things, like I do to climb, to try new things, to meet new people, to advocate even. To find love. To promote love.

If you have an Autistic family member, I encourage you, too, to look down the cliff at the cold lake below, or at the balance beam that is just 4" wide, or at the trampoline that can throw you a story high, or out of the plane. Whichever metaphor works for you. I encourage you to look. And then I encourage you to run with your fear. And jump. Or climb. Embrace it.

And by not letting fear defeat you, you can find joy and you can find love. It is worth it. We are worth it. You owe it to your loved one and to yourself to choose love.

Litany Against Fear/Litany for Love

For the Love Not Fear flashblog. With thanks to Frank Herbert for the Litany Against Fear used here.
 

I must not fear. 

Every time I have these conversations, the ones that devolve into hate, I remember: I am moved by love.

Fear is the mind-killer. 

They are afraid and fear is turning to anger and anger is turning to hate, but I can be fierce with love for their kids, for Autistics present, past, future.

Fear is the little-death that brings total obliteration. 

Standing strong in the face of the wall of dehumanizing hatred is an act of love. My love for my community is my shield and my strength, and it is tempered by ice and by fire.

I will face my fear.

I will stand with love. I am standing for love.

I will permit it to pass over me and through me. 

This is for their children. This is for those who I will know in the future. Who I love without having met yet. For those I know now, and love with such ferocity there are not words for it. 

The anger and hate hurts, but it will not break me. 

And when it has gone past me I will turn to see its path. 

Change is coming. Change has started and more will come, like a wave or a landslide or even a waterfall. 

Where the fear has gone there will be nothing...

Our efforts, our love, is not in vain. The children and adults we are fighting for will feel the ripples from our work, even if we never meet them.

Only I will remain.

At the end of the day, love will prevail.

Fierce, ferocious, fiery, protective, strong, squishy, gentle, love.

Elegy for a friendship

Several months ago I had a hard time, neuropsychologically--I was run up into my breaking point & had started to push. I wrote a bit about causes and contributing factors, but not much at all about what was actually happening in my life right that moment.

One thing that happened in my life at that time is a fracturing of one of my most precious and treasured friendships. I don't make friends easily, especially not the kind of friends who are like family is supposed to be. I'm not the easiest person to get to know, and I know where I stand on things (and what stances are mutually incompatable in a friend), and I have complicated access needs ("do without" is territory in which no potential friend would even consider treading). So--friend friends? Are to be treasured.

When something happens with one of these rare gems of people, then, it's kind of world-shakingly bad. It's hard to recover from. Change is bad, especially unexpected unpleasant change with no redeeming value. Something that falling into my "actually trustable and safe" ctegory requires is massive predictability, so it's more shattering than when someone merely a friendly acquaintence does the exact same thing.

So. Yeah. a thing happened. Namely, someone I literally trusted with my life (and a key to my apartment, and stories that will certainly never be published here, and literally I do mean with my life) called Purkinje an ableist slur. That isn't ok. It isn't ok when I am at my best and it isn't ok when I am at the edge, dropping things off and considering racing them to the bottom. That's epically bad timing, yes, but wanting someone out of my sight and/or life for that is consistent across all my states of being.

As is consistent with my character, I wanted my friend to fuck off and not fuck back on again. Or maybe fuck back on again eventually but I was pretty devestated. I'm not convinced now that the "never fuck back on again" still stands.

I miss my friendship and I miss my friend. Our conversations, inside jokes, knowing that trust is a given, that obviously at least someone is on my side, that I am in fact making sense (or not) and that any not understanding is genuine rather than obfuscation,  our silly traditions. There's a bit empty hole in my soul where this relationship used to be, and it's a hole for the kind of dynamic that is a once-in-a-lifetime-if-you-re-very-lucky deal.

I care for this person enough to not name them here, not without permission, that isn't what I want to do at all. That seems disrespectful, somehow. I like to think that my principles, like "I will not name non publicish people on my blog without their permission and a fucking good reason" and "don't fucking use dehumanizing ableist language and expect to get away with it" are part of my...charm? and part of why our friendship was what it was. The double edged sword of that is that some principles do not yield and that might be part of why it's broken, shattered, gone.

I've thought really hard about that. I'm not sorry that I'm like that, not really--but I am sad, a little, that I'm not sorry that I'm like that? Most of the things that clash with my principles are "and nothing of value was lost" situations.

This particular friendship, though, was of immeasurable value. The illusion that even someone disabled and difficult-ass like me can have that sort of friendship, can be a real person in all the ways, can have the kind of friendship most people never experience, that was priceless. But that's the big overall thing. It's the little daily things, the components, the inside jokes and the things that make other people in public go "oh my god..." and the traditions and all of it, the things that are observable but that there's no words for. There is nothing in the universe that pays for that loss. Nothing.

If this person texted me tomorrow, I don't know if it could ever be the same again ever. But I so want a time machine to somehow make that moment have never happened. I miss everything. I miss the hard and the easy, the silly and the serious, the venting, the hugs.

I miss my friendship, & I miss my friend.

For clarity: this really had nothing whatsoever to do with the mentioned having-a-hard-time, except for happening at chronologically the same time. I was staring at the abyss before this happened. This is not "and this happened and therefore lost it" but "I was already not doing well and then bad timing also awful and I has teh sads"