Saturday, August 12, 2017

Where's your compassion for us?

Folks, do not do this:

If an autistic adult, in autistic space, says that something happened that was painful, don't diminish that. To take an example completely at random, say that I, on a friends only facebook post, from an airplane, say "I recognize children have a right to fly but the one behind me is kicking and screaming RIP me", there is literally no need to say "but what if that child has autism?"

What about what if that child has autism? Does that mean I no longer have Ehlers-Danlos and my back won't be fucked up for days? Does that mean I am no longer sound sensitive? Does that mean lack of sleep no longer triggers seizures? Because autistic children exist?

Every autistic adult you encounter knows damn well that autistic children exist. We are, generally, in the habit of compassion for children having a hard time in public.

The thing is though? "That kid causing you pain may have theoretically been neurodivergent so shut your hole about the very definite, documented pain and harm done to you"? That's not serving anyone. You're saying that only autistic toddlers have needs. You're fucking over your own children, if you're a parent (it is usually parents who decide to cape for Schrodinger's Autistic). They won't be toddlers forever.

We generally do have compassion for kids who are having a hard time. The thing is, you have none for us. If we cover our ears you all throw an utter fit. How dare we? We are not allowed to be in pain. If we melted down the way that the pain Precious BeighBee is putting us in makes likely? We'd get shot. That is a way for us to die, being autistic in public. But you can't muster an ounce of compassion for us, can you? Because how dare we remind you that autistic adults exist.

Our pain is real. Our pain matters. Acknowledging it isn't going to hurt you or anyone else. Promoting this idea that only toddlers are autistic, and no one else has access needs or sensory pain or anything else? That is bigoted and it is unacceptable. Your children are going to suffer for it.

But hey that child whose parents brought no toys on the plane, and who was using language patterns autistic toddlers tend to not use? You sure defended him against attacks that weren't even happening.

Your contempt for autistic adults is showing. Might wanna see to that.

Wednesday, July 12, 2017

Parents wore out my good faith. You brought it on yourselves.

People always concern troll me, assuming that I'm thinking the worst of parents and thus holding them at a distance, being curt, charging them for my time, refusing to engage at all, engaging in a tone they don't like.

You know what? You're mostly right.

Do you know why?

It's because of what happens every time I try to engage with you people in good faith. When I try to be "nice" instead of just laying it all out there for you in words that come naturally to me. When I try to coddle your feelings a bit.

It's never enough for you. Ever. You don't want our help. You want your ass kissed. Let me tell you some stories. Recent ones. We're not talking when I was a pigtailed teenager. We're talking things that have happened in my thirties.

Scenario one:

We're talking about the Disability Day of Mourning. Allistic mommy is upset that it's not in April "for Awareness". Allistic mommy also opines that maybe those parents are autistic and that's why they killed their kids.

That's a horrible thing to say. It's also false.

I mention that I met one of those moms, long ago before she became a fucking murderer, and also I've met the surviving dads of 2 kids killed. The only autistics in the matter were the non murdering parents. In all cases in my small data set, the murdering parent was allistic.

She decided to declare that I said that all allistic parents kill their children. I said NO such thing but she wanted to yell at me and misrepresent me and verbally abuse me, so I said what she wanted me to have said to justify that.

This woman holds a high position in a state autism society.

She has yet to apologize.

I engaged in good faith; she did not.

Or let's talk about today.

I gave a parent the benefit of the doubt. She was talking like no one in the conversation had any difficulties beyond being vaguely autistic. This is not true.

I told her to stop assuming she knew anything about people on the internet beyond that they can type and have internet access.

She continued to do this, after a vaguely but not really productive bit of conversation. So, because I was trying this "good faith" thing, I said that I knew she didn't mean to come off like she's not going to listen to us because we aren't Like HerChild(TM) but that she is and that's a dangerous assumption in addition to being off putting.

Holy hell. You'd think I asked her something really egregious, like to exfoliate her heels one cell at a time. No. I did not. I engaged in good faith and told her what she was conveying that she didn't mean to convey, just for her reference, and that her assumptions were wrong.

Holy. Hell.

She started with "you don't know me". No shit I don't but I know patterns. I thought you were trying to avoid this one.

She was not.

So now she's threatening to abuse her child and blog about it to spite us, she's laughing at causing people seizures and flashbacks, she's trying to gaslight multiple people, she's claiming sarcasm when she's called out on saying straight up abusive things, she came down with schrodingers autism and schrodinger's epilepsy.

And while this one is doing more, to this second, and pushing more immediately, this is what happens every fucking time.

Every. Time.

Yes, I do know you. The second you get all puffy and say that to me, I know exactly how this is going to go. Every time I engage anything like on your terms, this is how it goes.

You try to hurt me. You hurt my friends. You threaten your kid because I didn't kiss your ass enough for your taste.

Every. Time.

You won't pay for my time but you want your ass kissed, you want to be told that nothing you're doing is wrong, nothing you do could be wrong, you want to be told your special, and you want NT word patterns.

And you don't get that? You respond with psychological violence. Every time. You're so transparent about thinking we're subhuman. We aren't people to you, we're resources to use and abuse as you see fit. You're not special; the vast majority of you are like this.

So parents? You want my goodwill back? Fucking act like it. 

NB: complaining #notallparents in my comments isn't acting like it. It's a step away from "I'm going to abuse my kid because I don't like you". So don't fucking do it.

Saturday, June 24, 2017

FAQ: PFL Edition

Inspired by parents, professionals, and other abled people who think that they have a right to tell us how to refer to ourselves and then get snotty when told that's inappropriate.

Q: May I humbly request you change to using person first language?

 A. No.

Q. I demand that you use person first language.

A. No. What happened to humbly requesting? 

Q. Let me tell you all about it! You must be unaware!

A. You may not. I am quite aware.

Q. But it puts the person first! It's more respectful!

A. It is not. I actively selected identity first language. Telling me how to talk about myself is disrespectful.

Q. But I need it to remind myself that my child is a person.

A. Woah there. "I can't think of my kid as a person" is really very much your problem. Why would you think that would win me over? It makes me very worried for your child.

Q. Person first language is correct.

A. No, it is not. Stop trying to tell me what to do.

Q. There is no need to be so rude!

A. Okay so you come into my space and demand I talk about myself in the way you want because otherwise you cannot remember I am a person and that isn't rude?!?

Q. I'm trying to help you by pretending I think you're a person. This is why you don't have allies! 

A. You acknowledge not thinking I'm a person and come into my space to tell me how to talk about myself. You're no ally.

Q. How will I learn anything if you don't use person first language?

 A. If you need to be reminded every other word that I'm a person, you're not quite up to the level of this blog. This is not a Disability Rights for Beginners blog.

Q. You're so rude!

A. But telling me how to talk about myself is not rude. Ohkay.

Q. You have poor social skills because you have autism.

A. I am not the one struggling with social skills here in this situation. You should be embarrassed at your behavior. I'm getting second hand embarrassment for you.

Q. So you'll be changing to person first language?

A. Piss off and don't piss back on again.

Thursday, June 1, 2017

Dear PSU, it IS partly your fault: an open letter

Dear Mr Wiewel and the entire PSU board,

I am sitting at home by my computer instead of attending class today, in light of the terror attack on the MAX on Friday. Sure, possibly Micah Fletcher is attending class, but I suspect he is braver than me, better than me, less likely to die from relatively mild injuries than me, and less likely to be targeted than me. So don't try to use another student against me. That's disrespectful to him.

This letter is about you and the choices you have made, or failed to make, that are why attending class is currently not a thing I feel safe doing.

It's funny, the emails you send the school, Wim. Out of one side of your mouth, you're declaring Portland State a sanctuary campus. Out of the other? You're saying we can't prevent Nazis from using our campus as a platform. They're entitled to air their views, you say.

We've all heard their views, Wim. Their views are that a large proportion of the campus population doesn't deserve to live, much less be on campus. I'm certainly not supposed to be, between my gender and my disabilities and my race. Nor are many other students, those you allege to want on campus. But not enough to stand for them.

Remember back before the election, Wim? Remember the students parading about shouting anti-Latinx slurs, anti Black slurs (you've never pretended to care about ableist slurs so I'm not getting into that, we call that Tuesday at PSU, but that's another letter), pretending to build a wall? They were harassing students. They were making students feel unsafe. But "they have a right to free speech".

People have had knives and guns pulled on them on campus, Wim. By the same folks who were parading about. From folks who video and doxx people who attend PSUSU and other progressive groups' events. This is not free speech, Wim, this is threats. This is inciting violence, though one could argue it is already violence. We have a right to privacy. We have a right to not be harassed for our very existence.

But you, members of the board, who refuse to have an open meeting where students can hear and see what's happening, you support these men in harrassing students. You won't stop them, you see, not even from threatening folks with weapons, because "freedom of speech". Freedom to brandish weapons on campus isn't in the first amendment, bro, but apparently you missed that.

And now, Wim, people are dead. People are dead because this city has a Nazi problem that you allow to breed on campus. You won't find a marginalized student who hasn't been made to feel unsafe by Nazi symbology, slurs, posturing, or transparent threats, but you have to support the freedom of speech of the poor oppressed white men quoting Hitler.

Now people are dead. The man who killed two and seriously injured a third was targeting teens of color, Wim. Three men stepped in, but what if they didn't? They'd still be alive. The girls would likely be dead.

Do you know what the man said? He said he stabbed the men because criticizing him, telling him to stop, violated his freedom of speech. He said killing people for telling him "you won't do that here" was patriotism. He said killing them was his right because he wasn't allowed to spew whatever venom he wanted unchallenged.

Does that feel uncomfortably like what you've been saying in your emails? It should, Wim. Because you're coddling men like the terrorist, you're saying that it's their right on campus to spew whatever hate they want, to back it up however they want. You're not drawing a line, Wim.

You're going to have to take a stand. The powers that be at PSU are going to need to choose: is this Nazi territory, or is it going to be on the right side of history? Right now you chose the former, and now people are dead. You currently support an environment of white supremacist recruitment and action.

Pick a side, Wim. And be honest about it. I can't be the only person afraid to go to school. If you want me and people more marginalized than me on campus, show us. Take a stand.

class of 2018

Tuesday, May 30, 2017

Dear Destinee, it's not your fault. An open letter after the Portland racist attacks

Context: this post is written after a white supremacist went after two teenage girls on public transit, for being people of color in public. Three men stood up and defended them; he murdered two of them. The girl who, at this point in time, has talked to the media, was blaming herself. It wasn't her fault.

Dear Destinee, and your friend,

I'm so sorry that you both were targeted the way you were. I know it's probably not the first racist venom you have heard, and I'm sorry to say it's unlikely to be the last. This city has a big racism problem, as much as they try to deny it. You have never deserved to be the target of that vitriol. You will never deserve to be the target of that vitriol.

The experience must have been harrowing. I cannot imagine sitting in your shoes that day, or the feelings you are having now.

I saw on the news you blaming yourself, saying these men are dead because of you.

That is not true. Please believe me, that is not true.

A cowardly man singled you and your friend out because, as teenage girls, you're an easy target. You weren't with someone who he didn't want to fight. He reckoned everyone on that train was as cowardly as him and would just let him harass and attack you.

He reckoned wrong. Other people, of their own free will, knowing it was risky, said "you may not target these young women. We will not allow it." Everyone who has ever considered intervening knows it's risky. Part of why people so often keep their heads down is because standing up is scary.

Those men did the right thing for you, Destinee. They chose to put themselves in harm's way. Based on everything I have read about them, they'd do it again. Every person interviewed has been saddened and not surprised at all, because they were men of principle and justice.

It's not your fault. It's not. You bear no blame in this situation. You have every right to ride the MAX. To go from place to place in safety. You did nothing wrong. It's not your fault.

You're innocent, both of you. I'm glad you're alive, that you made it to safety. I hope you are healing.

Please believe me, it's not your fault. It's his.


Thursday, May 4, 2017

I wrote to my Senator. #corpsesdontvote

This is what I emailed my senator earlier today, because only the senate can keep the ACA. CN for medical disasters, fairly graphic descriptions.
You get the cranky version of this because your staff won't even promise the most basic of ADA accommodations. Ironic given that I'm writing to you about health care and one of the conditions that requires said accommodations.
Like many Americans, I have chronic health conditions. Like many Americans, I need you and the whole democratic party to grow a spine and stand for me. I vote democrat because the other choices are unconscionable, but I am thoroughly unimpressed with the pattern of roll over and play dead. I need you to not be a doormat.

Here's some incentive: how I am going to die if the senate doesn't kill the republican death to poors bill.

My first chronic, life threatening medical condition is adrenal insufficiency. I do not make cortisol. Without cortisol, people's bodies cannot respond to the stresses of every day life. I take a daily corticosteroid pill and must inject myself with extra steroids if I am sick or injured. Without cortisol, the body cannot restore normal functions in times of stress. Have you taken a first aid class, Senator? Recall what you were told about shock. The heart doesn't pump effectively. Blood pressure crashes. Blood sugar crashes. Death can result. I am going to die from going into shock from a stubbed toe if you folks don't find some courage. It's scary. When your heart won't move blood, everything is /scary/. It's not a good death.

The other option, of course, is for me to die of epilepsy related complications. Because of a lack of health care in my youth, my epilepsy got pretty hard to treat--the more seizures you have, the more likely you are to have more seizures. They are harder to treat the longer they are allowed to go on--this is called kindling. As a result, my mostly-effective seizure meds are about $1000/month (if we lived in a real country with universal health care they'd have been stopped much sooner, but we don't. We live in the land of "the poor and disabled should die horribly". Your part in maintaining that status quo is very much noted).
I have 2 options for how to die if epilepsy related causes take me. The first is SUDEP, sudden unexpected death in epilepsy. The way to prevent SUDEP is to control seizures. SUDEP is probably not painful, but it's traumatic to the people who find the body, and it's a dead person who won't vote for you. Dead people don't vote. It's a lot of grieving people, all because the D doesn't stand for democrat, but doormat.

The other option is status epilepticus. You aren't going to like reading this. Since it's my fate, not yours, I don't actually care. Be brave. It'll be good practice for that spine growing thing.

Status epilepticus is a seizure that does not stop.The most commonly noticed status epilepticus is tonic clonic status, although partial complex and absense status also exist (and lead to all sorts of problems like subtle brain damage and getting hit by a goddamn car because you're only 25% aware of the world around you). This is not good.

Your body is not made for every muscle to be contracting at once for an extended period of time. Neither is mine. The muscles start to break down. This floods the body with waste. The brain fries itself. Like, literally. It cannot deal with the fallout of the electrical activity. It is not made for that. You can seize yourself into a persistent vegetative state. If you are me, your seizures will dislocate joints. Remember that adrenal insufficiency thing earlier? That is the sort of injury that leads to adrenal crisis, as is everything else about status epilepticus. Your heart gives out. Your kidneys can't cope. Your brain stops being able to not seize.

This is an awful way to die.

If you do not stand up to Republicans, you are choosing for me to die this way. And my loved ones will not forget it.

With health care, I am an involved member of my community. I participate in martial arts and assist children in accessing the activity as well (including children who, like me, need health care to be able to interact meaningfully with all that life has to offer). I am finishing a biology degree--I was going to be an ecologist until the republicans decided to destroy ecology, and no one stood up and said "nah bro you can't do that". I teach and judge gymnastics. Kids and cats love me. It's mutual.

Without health care I'm a corpse. And my blood will be on your hands.

Saturday, April 22, 2017

Anti-med sentiment almost killed me.

Before I start, DO remember that I believe solidly in cognitive liberty. Your brain, your choice. However, the pushing of inaccuracies and terrifying, largely inaccurate rhetoric, pushing of worst case scenarios as common and inevitable, stigma, and lumping in all sorts of things together all led to some very bad places. I support whatever you choose to do to your brain--what people discouraged me from doing with mine is the problem I am talking about here.

CN: medical neglect, discussion of stigmas, DARE, abusive parenting practices.

I was diagnosed with epilepsy when I was pretty young, 2nd grade maybe? My seizures weren't dramatically seizurelike. They were not common. I didn't know I had epilepsy. I didn't know I was taking anticonvulsants until years later, because lying to me was a hobby of my mom's I swear.

And then I took DARE at school, like we all did. And I became concerned about my mother's smoking and her drinking--which, to be fair, were at concerning levels (not feeding your kids because you need cigarettes? That's a problem. I'm ok standing in judgement on that, as the child who went to private school while simultaneously living on a starvation diet). Internalizing "drugs are bad" wasn't hard because in my life, the ones I knew about very much were. Mom fell off the toilet that she fell asleep on because she was drunk, don't wake her up unless you want to get hit. We're down to frozen pot pies because buying cigarettes was more important.

Rather than adding nuance to the discussion, my mom decided the appropriate response was to yank me off the AED I'd been taking. At this time in my life, my seizures were, again, not very dramatic, but the pronounced interictal moodswings were starting to assert themselves. So life became meltdown city, because I was having more seizures, and that's just the direction my brain was taking things at that time--hyperreactivity in all ways. It got worse after my stepdad smashed my head into a doorframe rather than not stand in said doorframe, consistent with a blow to the seizure focus.

When I was in high school the doctor did ask if I was losing time (yes) or having deja vu (also yes) but my mom told me that if I said yes he'd think I had a brain tumor. So that became a moment of lying because my mom told me to, and thus not getting back on meds. She made me scared to tell the truth.

Several years later, mommy dearest made sure I got a diagnosis of ADHD (which is fair. I have ADHD like woah). Stories of problems on stimulants abound...and I had Big Problems on Adderall. I stopped it shortly after--off anticonvulsants, and with my one known to me experience of neuroactive medications being pretty bad.

I rediscovered autism not much after that. And guess what is all over a number of autistic run pages? Anti med sentiment, that's what. And I do totally sympathize with the experiences that people had, I do. People were inappropriately medicated. They were overmedicated. They were coerced or even forced. And that is wrong and should not happen. I am strongly against that.

But the narratives and the organizations linked? So many were written not as "this happened to a person" or "this is rare but it can happen" or even "so this is a thing", but as inevitabilities. It was presented as a given that all neuroactive medications are poison and will damage your brain and probably reduce your lifespan and just generally fuck everything up.

Shortly after this, my discovery of the autistic community, and by extension the Mad Pride community, I started dating a person I went to school with. His parents were AAers. A drug is a drug is a drug, it's all poison and addictions, literally anything is better than taking a drug, et cetera. We were still together when I tried to do something about the seizures (although what I initially tried to get help for was the interictal mood swings, since they were what I could describe--I was a legal adult and still had not been made aware of a history, and a present, of epilepsy).

It took me three years after all this to even consider medication, because it was all poison, because it would shrink my brain and kill me, because life threatening side effects were inevitable and I should be proud of and roll with the interictal mood swings, that's basically a mood disorder, right? Three years of kindling. Three years of more common seizures, that recall I still wasn't aware were seizures because everyone was perseverating on the mood stuff (myself included), three years of just letting the seizure pathways get more and more ingrained.

And then I started having clusters of seizures that even laypeople noticed. They crossed the threshold from simple partial to complex partial, and thus unresponsive, and forgetting. They crossed the threshold from one at a time to clusters. They crossed over into where people would notice. The seizure became the problem, not the aftereffects.

But all medication is poison, right? Groups linked to by people I highly admire were full of that. Bad experiences were inevitable. Life destroying experiences were inevitable. That was the message, over and over and over. If it effects your brain, it'll fuck you up forever, regardless of why you take it.

By the time I got on antiepileptic medications, I was 21 years old, and terrified. My one experience with neuroactive medication, Adderall, was awful and scary and bad. I couldn't deal with that again. And the first med didn't work. The second did, but ate my blood (which is rare, not at all common). The third didn't work. Or the fourth. The fifth gave me a death rash. On and on.

And every time I said I was on Topamax, or Trileptal, or Keppra + Topamax, or whatever..."that's a lot of medication, are you sure you need that?". Autistic circles. Other neurodivergent circles. Everywhere. Rescue benzodiazepines? Yes I know those are addictive thanks.

I have intractable epilepsy. I have an incredibly high risk of SUDEP. My breathing has stopped many times. My heart has stopped at least once. All from seizure activity. I'm prone to partial status epilepticus, which can cross over into generalized status epilepticus.

There's all sorts of weird factors that go into intractability, but part of it is: how long did the seizure connections have to get established before trying to stop the seizures? And mine had a long time. A long, long time. And yet still people tell me that my medication is poison. I didn't ask them. When I want their opinion I will ask for it.

The lack of nuance, the a drug is a drug is a drug? I almost died from that (well, I did, but it didn't stick). I will be on a medgoround for the rest of my life because of choices informed by that narrative. By all means, talk about your experiences with things, but don't present them as universal. And don't present it as a moral argument (did you know? I'm weak because I can't outstubborn epilepsy. I've heard this from multiple sources). Just don't do that.

This narrative shoved down my throat, with the goal of keeping me from getting medical help for my life threatening neurological condition? It's every bit as much coercion as pushing medication is. And it's coercion that almost killed me. I don't actually give a fuck if people meant well or not, because they were letting their agenda and their feelings about how pills are bad overshadow the very real fact that people die of untreated epilepsy. It wasn't brave to tell me that I could try supplements and yoga. It was horrendously dangerous.

Do what you want with your body, but don't tell other people that their attempts to live a better life, or to live at all, are poisoning them. I have to live with the fallout from that, and am lucky I lived through it. Learn. Do better.